Water Prairie Chronicles Podcast

Show Notes:

Find the full directory at waterprairie.com/listen.

In this episode, Helen Panos, owner of Dynamis Learning in Atlanta, GA, and Heather Wright, a Master IEP Coach, share a wealth of knowledge and guidance on the important topics of Individualized Education Programs (IEPs) and 504 plans for students with disabilities. These passionate advocates offer a comprehensive overview of these plans, emphasizing the critical role that parents play in their children’s educational journey. After hearing their discussion, you’ll be a pro at understanding the difference between IEPs vs 504 Plans!

Throughout the discussion, the conversation underscores the need for a collaborative approach, emphasizing that the school system, educators, and parents should work as a team to ensure that each student’s unique strengths and weaknesses are recognized and addressed. Additionally, they highlight the importance of early intervention, early identification of potential issues, and ongoing communication to foster a supportive educational environment.

Overall, this podcast interview provides an essential resource for parents, teachers, and anyone interested in the world of special education. The conversation highlights the importance of advocating for every child’s unique needs and creating an inclusive educational environment through collaboration and communication.

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Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

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She obtained her masters degree in Learning Disabilities and Behavior Disorders from Georgia State University, in Atlanta, Georgia and is also a member of the Master IEP Coach® Network.  She currently works with families of children with learning disabilities, autism, developmental delays, behavior disorders, and other health impairments, to get the supports and services in the public-school setting, through collaboration. Parents know their children best and are their best advocates; however, they don’t have to be alone! 

Heather grew up in Pittsburgh, Pennsylvania and moved to Georgia in 2006, where she lives with her husband and two fur babies. When she is not working you can find her cooking and baking, crafting, binge watching her favorite show, or enjoying the lake.

Full Transcript of Interview:

Tonya: All right. Today I have the pleasure of hosting two important guests, Helen Panos and Heather Wright with me, and they are here to shed some light on an important topic, and that is understanding 504 plans and IEPs and the similarities and differences between them. So Helen and Heather, welcome to Water Prairie.

Heather: Thank you for having me. I’m so excited to be here today.

Helen: Yes, thank you for having me as well.

Tonya: So I’ve, I’ve been looking forward to this because this is a topic that I’ve been wanting to bring on since we started the podcast. So it’s been over a year and a half now. And we did have, um, the Nicole Schlechter came on and she’s the IEP Mom.

So we did talk a little bit, um, early on with that. So, and, and those that are listening, I will link this in the, in the show notes if you want to go back and hear what she had to share, but, um, but we didn’t get into really. a deep dive on comparing the two plans and I think a lot of parents are not sure exactly what it is.

Before we jump into the topic, this season we’re playing a game with all of our guests called Two Truths and a Lie and I’ve asked Helen and Heather if they would bring their facts or pseudo facts with them and they both have agreed to play with me. So, um, I’m going to start actually with Heather and ask her if she’ll share her facts with you first and as you’re listening I want to try to figure out which one is a lie of the three.

After you listen to the episode, go and look at Instagram or Twitter and leave your guess in the comments. Or if you’re watching on YouTube, you can leave it in the comments on the video. But listen to the whole episode first. So, Heather, what are your three facts that you have for us?

Heather: So, we’ll go with, um, my background was I was a middle school special education teacher, and mostly math, and I loved teaching middle school math because I actually loved being a middle school kid. Um, I also say special education chose me.

Tonya: So, Helen, can you top that one?

Helen: I’ll try. Um, let’s see. So, um, I was chosen to go to Plains, Georgia to work with 14 other, um, let’s see, Georgia educators. And I met, actually, while I was there I met, uh, President, uh, Jimmy Carter and his wife. And then, another is, I was in the opening ceremonies of the 1996 Olympics. I was actually on the field performing. And the last is that I am a triplet. So one of those is a lie.

Tonya: All right, so listeners, take your guests, see if you can figure them out. And then, um, and then leave your comment a week after we post this, we’ll come back and we’ll put the answer so you can check your, your work there.

I invited Helen and Heather because, um, Helen has an extensive background and experience as a 504 chair and Heather is a master IEP coach. So I thought this, this was the perfect pair to come in and to help us understand about what, what a 504 is, what an IEP is, what the differences and listeners, if you’re outside of the U.S., these plans won’t apply to you, but you may have something similar to that. So, um, so listen through. It may give you some ideas of things that you can ask your, your own school for your child or the authorities that, that you’re working with, but at least give you an idea of what some of the things that are happening in the U.S. are, but for those that are in the U. S. This is, this is specifically for you to understand more what’s happening. And I know I get a lot of questions trying to understand the differences, the laws around them and all. So I think this is a great topic for us to pull in. And my goal today is that our listeners can understand the differences between the two, the criteria, some of the protections, and even the administration of the plans.

So the questions I’m going to be asking will be kind of geared toward those things. And um, so with three of us, it’s a little bit different in this. So listeners, you’re just going to have to. to, to stick with us as, as we try to do like a ping pong here between, between everyone. So let’s start with, uh, just a baseline.

Could, could, could one or both of you jump in and explain just briefly what is a 504 plan and what is an IEP?

Helen: A 504 plan is out of the section 504 of the Rehabilitation Act of 19, I think it’s 73. Is that right? I think it’s 73. It’s way back in the day. And really this wasn’t even being used for a long time because I was an educator for 25 years and I’d say in the last 10 years you’re really Seeing a lot of 504 plans.

Um, Especially because of a diagnosis like ADHD that’s become very popular these days. So Um, the office of civil rights is the one that actually is the federal agency that kind of monitors a section 504 compliance And it’s also the responsibility of each district to ensure that the 504 is compliant and being monitored.

So the office of the OCR, the Office of Civil Rights monitors it. It comes down to there’s a 504 coordinator in the school system. They oversee it all. They have meetings because there’s usually I say usually because there’s been some changes since Covid. But usually there’s a 504 chair that oversees it in a school within the school systems.

It should be a 504 chair in the school. That oversees it, um, and basically it allows accommodations if you have a medical diagnosis or you know, anything, um, physical, ADHD, anxiety, those are the popular ones, uh, dyslexia, to allow your child to have accommodations if the need is shown, meaning it’s shown in the school.

Um, not just at home. Okay. So, um, because the teachers are having the meeting. They’re part of it. Parent comes in, teachers have the meeting with the 504 chair. And those are done annually. Okay. Now, you do have to get a re evaluation every three years as well. So, then you have to kind of go back to your pediatrician or your doctor to, to then do a re evaluation.

But you can always add in a diagnosis, you know, anytime, really. I’ve had multiple father of four meetings in a year sometimes for one child. So, that’s pretty much it.

Tonya: We’re going to talk a little deeper into it too, but that kind of, so, so parents listening, that’s, that’s the 504. Heather, can you fill in what an IEP is?

Heather: Yes, I’d love to. So an IEP, um, you’ll hear it as Individualized Education Plan or Program. Depending on where you’re at, the P kind of changes, but it’s all the same thing. Individualized Education Plan or Program. And what it is, is the document that outlines the specific supports. And methods in which a child that has an eligibility for special education under the 13 eligibility, one of the 13 eligibility criterias, um, that’s under IDEA law, um, you get determined that you’re eligible for special education and then a plan that IEP is developed.

Supports accommodations that supports individualized instruction or, um, differentiated instruction, and that’s really the biggest difference between the 504 plan and special education and IEP. So, with the 504 plan, you can get accommodations to support your learning, your social, behavioral, anything really.

With the accommodation side with an IEP you get the accommodations, but you also have specially designed instruction So it is provided by a special education teacher and they individualize your learning to meet your unique needs.

Tonya: Okay, so before we go any further Helen you had mentioned that dyslexia would come under 504 I’m assuming not for every child that has dyslexia though because some may require specialized.

Helen: Yeah, there’s a fine line and maybe Heather can say where that fine line is, but that’s correct. Uh, not every dyslexia is a 504, it could be an IEP, you know, because maybe a lot of times when you get a diagnosis, you usually have something else as well. They usually come in pairs. Um, so if you have ADHD, you might have executive functioning. If you have dyslexia, it might be something else as well. So you’re correct about that. Not all. 504s are IEP, or um, dyslexia is 504s.

Tonya: Okay. Okay. So, Helen, as a former 504 chair, could you tell us about the students that would typically benefit from a 504 plan? So we just talked about a couple of them there. Um, can you go, go a little, little deeper on that?

Helen: Sure. I’d say even, okay, so I think there’s a misconception out there that maybe gifted kids wouldn’t have a 504 plan, but actually to the contrary, you’ll see a dual classification is what we call it, where a kid could be I, uh, special ed classified and a gifted classified child.

And my guess is that’s where you’re going to see a 504. You could see an IEP instead, but if it’s not too severe and they can, it fits under a 504, you could get accommodations for the ADHD. Like extended time, small group testing. Um, sit, sit in the front of the room, you know, all these kind of things. Um, ADHD is still number one, even though anxiety is probably running right up there next to it now, I hate to say, then it may need to go to an IEP because they get more specialized attention and instruction.

They’re not going to do that with a 504 and a 504 plan. It’s just the teachers, the typical classroom teachers are going to get your 504 plan with accommodations and they have to follow them by law. There’s no special teacher coming in to assist, and Heather can talk more about that. Uh, like you see in an IEP.

Tonya: Would that also include a child who is, um, maybe diabetic that just needs medication during the day?

Helen: That would be a 504. That was the number one thing that came out. I think strongly with the 504 plans was Diabetics right and then it’s now You know molded over toward add in now ADHD and dyslexia and all these other things anxiety. I’ve seen oh, I’ve had to look up some things. I never even knew existed. A lot of things out there.

Tonya: Would it also include a student who has a temporary need such as a broken leg or something like that? Would that also be a 504?

Helen: Uh, you know, they try not to do it. And if we think the child is not going to be, and it’s up to the parent kind of there. If we don’t think the child’s going to be in a cast for very long, or now that they’re all going a lot more, uh, computerized, they don’t have to write as much, right?

If it’s a broken arm. They usually work it out with the nurse because the nurse will get a plan as well, a health plan, right? So usually they can work it out. Parents should stay on top of that because if they see it’s getting too difficult for the child Yes, I’d go with a 504 so you could be protected.

Heather: I also wanted to take you back on that too, is that even with a 504 plan you still can get have access to related services So That could be special education, and I say special ed transportation because that’s what it’s called, like, when we’re documenting it, but transportation, if you need it for a child with a 504, can still be included on a 504 plan.

You don’t have to have an IEP in order to get transportation, you know. I’m, again, I’m calling it special ed transportation, but transportation can be added as a related service into a 504.

Helen: And homebound, homebound services as well.

Heather: Also, a tutor coming out. It could also be the other related services could be OT like occupational therapy I have a client right now that has a 504 plan that has OT consult and written into their 504 plan with transportation as well So you can get some supports That maybe an IEP would provide through a 504 You just have to have the data to back that up and support why the kid requires that level of support So I just wanted to interject on that too because a lot of the times parents I think, well, I can just get accommodations, and I can’t get any other additional supports, but it could be related services on top of those accommodations as well.

Helen: Right. Okay. Good. I do want to add while I’m thinking about it, uh, Tonya, that if people, uh, if a child loses their accommodations over time, and that is the need is not being shown any anymore. I’ve heard people being told, oh, he’s not a D H D anymore and we don’t have a 5 0 4 anymore, and I’m going, well, how did he lose the A D H D?

Right diagnosis. You don’t just lose that. So I want to make that clear, because I’ve heard that recently with one of our kids that we’re tutoring. Um, and on top of that, you can leave a, I always say you should leave a 504 open whether it has accommodations or not. And I’ve seen 504 with no accommodations, and we still have to have an annual meeting to check in on that child.

If you close that 504, now you’ve got to start all over again.

Tonya: Right. Now, we had been told that, both my children were on IEPs, but we had been told that same advice, to make sure that we always kept it open, even if they, if they had a year where everything was going well, because it’s easier to keep it going than to start it all over again.

So that’s, that’s good, good advice there. So, um, so Heather, as an IEP specialist, could you describe the students that the IEP would typically be recommended for?

Heather: Sure. Um, really, it all comes down to educational impact. So a child that has ADHD, is medically diagnosed with anxiety, might not require specialized instruction with an IEP, right?

They might need accommodations. But where the fine line goes is where’s the educational impact. And I say that, I didn’t say academic impact. I said educational impact. Educational impact is not just. reading, math, A’s, B’s, C’s. It affects social emotional behavioral as well. So yes, it could be your grades.

And yes, it could be how bad you do on your SATs. But if you have a disability or a struggle that is academically, excuse me, educationally impacting you. So whether that is academic, social, emotional, behavioral. and it requires you to need specially designed instructions, then that is when you would look at an IEP.

So, for instance, if a kid has ADHD, and maybe they’re medicated or not medicated, and maybe they only need some accommodations, but then the workload gets harder, but they’re also struggling to make friends. Maybe it’s impacting them, and they’re behaviorally getting in trouble. Then it’s, hmm. Now their ADHD is getting in the way of them behaviorally, so we need to see is there instruction that needs to be taught to this child in order to move him forward or her forward, right?

Right. So, it could be that. It could be we’re seeing a lot of the anxiety and the invisible disabilities of anxiety, depression, and a lot of kids are masking. They don’t want to show. You know, I don’t want to show that I have this going on and I hear it all the time. Well, they have straight A’s That doesn’t mean that they’re not being impacted by their depression, their anxiety, their learning disability.

So, um, I did want to mention that there is a misconception in the community too that even though you might be medically diagnosed from a pediatrician, from a psychiatrist, with something Autism, ADHD, they cannot diagnose an IEP. So just because you have a medical diagnosis, doesn’t mean you’re just going to take it to the school and poof, here’s your IEP.

The IEP team, and I think we’re going to talk about that a little bit later, um, determines if they meet the criteria under one of the 13 criteria. So intellectual disability, learning disability, autism, traumatic brain injury, visual impairment, deaf and hard of hearing, there’s 13. So you have to look, do they meet those criteria, and is there educational impact, and is there a need for a specially designed instruction.

So that’s really what we look at when we’re looking at does a child need an IEP. Um, some of our kids come with a 504 first and they realize that the accommodations just aren’t enough. Just having small group testing or just having extended time isn’t enough. Just having those, you know, check ins with a teacher isn’t enough.

Their executive functioning skills are struggling that they don’t even know how to ask and how to advocate and how to use their time wisely and how to use the headphones and all the things so they have to be taught how to use those skills and that’s the instruction that um, an IEP would, would give you.

Tonya: So we, we’ve mentioned executive functioning skills a couple times now and back in episode 71, if you’re listening and you’re not familiar with what we’re talking about, we had an executive functioning coach on to talk specifically about that. So mark that to go back and listen to, to kind of fill in the blank there.

But I did have a question about that because having, having a child who, who struggled with executive functioning skills, that was always off the table. for us. And so it sounds like the way that both of you are talking that at least where you are in the country that that is being recognized a little bit more.

Can you, and, and we hadn’t talked about this ahead of time, but so many kids do, are, are affected by weak executive functioning skills, especially by the time they get to middle school. Um, so does that fall under 504, under IEP, or maybe a combination?

Heather: So in my terms of when I, executive functioning isn’t going to be an eligibility criteria for special education, but it comes into accommodations that can be given to a child to address those executive functioning deficits.

Or it could be goals and objectives that an IEP provides that are monitored on a consistent basis. You’re teaching the skills on how to. Right. Plan. How to organize. Organize. How to do all the things. Basically how to live your life every day. Because living your life every day is basically executive functioning.

Yes. It is. You make so many decisions in a day. All right.

Helen: Very important skills to have. Executive functioning.

Heather: If your child is diagnosed or, you know, found eligible and they do struggle with executive functioning skills, which most of our kids in special education, they do. They do. They struggle with organization.

Their backpacks look like the dumpster. You know, you can’t find anything. Their lockers, it’s just awful, right? They can’t remember the third thing you said on a list of, of two, you know? So like, they have to be taught how to do those skills. And that’s where, if your child does have an IEP, the special education teacher or the related services providers can support those deficits and teach the skills.

And scaffold it so that you can build on that, right? We’re not going to say, hey, you need to go into middle school and advocate for yourself when the kid’s like, I don’t even like to raise my hand and say the name, right? You have to teach them that it’s okay and create that environment. So it’s really building on the strengths of the child to work on those deficits through objectives and goals in the IEP.

Accommodations that can be provided in the IEP and the 504 has the accommodation side, but not the goals and objectives side, right?

Tonya: So, so if a child is starting to show that the, the weaker skills that they have are causing them not to be able to reach their academic goals that they have, then it might be that an IEP would come into play, not because of the executive functioning skills, but because of the, they’re, they’re dropping back.

They’re not reaching what they need. And then at that point, that’s when a goal could be written to help strengthen those skills. Is that what you’re saying?

Heather: We could be. And they based that on, you know, classroom observations. They look at data on just classroom assessments, anecdotal, observational, you know, kind of things.

Um, and if you do go with eligibility for special education, you’ll typically go with a comprehensive evaluation where a school psychologist is doing formalized testing and executive functioning is typically part of that. Especially if you are a parent that, you know, your child struggles with planning.

And I’m sure that the teachers know it, too. You address that with the team as a concern, and you say, I am concerned about their planning. They cannot plan to save their life. Like, they couldn’t open a box and get out, you know? You, as a parent, knows your child best. So, if you’re seeing things that are happening at home, it’s still important to bring up those concerns to the school and say, I’m concerned about…

The planning. I’m concerned about their attention. I’m concerned about how they’re processing information. I’m concerned about their reading and address that with the team so that when you’re meeting to potentially go for an IEP or they can do the evaluation process, they’re not leaving anything on the table.

They’re addressing your concerns and seeing if there’s any assessments or tools that can support your child that way.

Tonya: Alright, good. I appreciate you answering that, that, that question. It’s something that, that we don’t always talk about, so it, it helps to kind of clarify, and I’m just going to pick both your brains as, as we’re going through this.

The, um, so I want to talk, I want to switch a little bit now and talk about maybe the criteria for each of the plans. So what are some of the factors that are considered when determining eligibility for a 504 plan? So Helen, I’ll have you answer this one.

Helen: Um, so factors, number one, you always have to have a form from a medical professional or a psychologist.

I’ve seen a lot of psychologicals. People do go to psychologists. One thing I think parents need to be aware of, though, with a psychologist is they’re very lengthy, right? Oh, I’ve seen some really lengthy ones. Um, so psychologists will write down a lot of accommodations, okay? And what most school systems are going to say to that is, Again, it goes back to the need being shown in the classroom and if your child is not showing that need, they’re not going to give you that accommodation more than likely because the 504 chair, if they’re good, they’re listening for, okay, I’ll go around the room and say, okay, math is what’s happening in there.

What’s happening in language arts, what’s happening in, in, you know, social studies and all these. So it could be one class. That, that’s happening and, and maybe not the others. It just, sometimes it depends on how the teachers run in the class too. It, it may be a better fit for that child. And then the following year, you’re like, Hey, wait, he did fine in math and now he’s not doing fine in math.

Tonya: Right. Yeah, so, so it may not have had anything to do with math. It may have been the environment for them.

Helen: Yeah,  it could be the environment helping the child. Um, but definitely, uh, psychologists tend to put a lot of things down. And it’s not, That’s typically not going to go on a 504 plan that many things. Okay, so the big Q is a need has to be shown.

Tonya: How how does that compare to the IEP between the two?

Heather: Yeah, there’s honestly, there’s a big difference between the two. Um, because when you’re looking at special education, you are probably already in a tiered process of interventions. So the school system, the teachers have identified that there is an area of concern.

Maybe it is in an academic area, but it could be social emotional. It doesn’t have to be that the school sees that it could be, you could do a direct parent request at that point as well. So there is. A few different options that parents have that if you’re seeing it, but you’re not the school isn’t saying it then you could do a request and we can talk about that a little bit later.

I don’t want to dive all into giving too much information or overwhelming our listeners. Um, but your child is probably already in a tiered process and receiving interventions. So, a math intervention, a reading intervention, a behavioral intervention, a speech intervention. There’s interventions that are being done.

And what that looks like is if the team is meeting and they’re not making progress with that intervention, then the school team is going to say then there might be something else going on here in terms of a disability that we need to explore. So then they’ll bring the parent in, um, and let me back this up to You’ll hear out there in the world, and if you hear as a parent that’s listening to this, that RTI data, that’s what they call it, RTI, Response to Intervention, that the data has to be done before the evaluation process is started.

If you hear, again I’ll repeat this, if you hear that RTI data has to be done before the process of evaluation is started, that’s inaccurate information. RTI intervention data and test at the same time. So, if one likes it, one doesn’t. Yeah. That’s a gold nugget. Um, but you do have to have intervention data to show that they’re, they’re not making progress.

So then, we’re looking at eligibility criteria for the 13 criteria, oh my. 13 eligibility criteria, um, and each one of those 13 has different criteria to be eligible. So for instance, if you are suspecting that a child has a learning disability, that’s going to be different criteria than a child that might have other health impairment that has a diagnosis of other health or, um, of ADHD.

So for instance, if we’re looking at a learning disability. They do have to have a classroom observation. They do have to have a processing disorder. They do have to have underachievement in an academic area. So there’s different criteria. And this is nationwide. So, federally guidelines tell us what the criteria is for each of those 13 criteria.

So, you can go to the, um, and I say Georgia because that’s where I’m sitting right now. That’s where I go. But if you go to the United States Department of Education IDEA. It’ll tell you those 13 categories and what you need in order to, you know, qualify under those. So, it does vary state to state, so please, if you’re listening in a different state, go to your state’s website and it’ll tell you what it looks like.

But, when push comes to shove, again, they’re coming back to, um, educational impact and is there a need for specially designed instruction. So they have to prove those two things in order. to be eligible for special education and then develop the IEP. Okay. You have to be found eligible, and just like, just like IEPs for special education, you have to be found eligible for a 504 plan too.

So you just don’t automatically get it, you have to be found eligible, and then they develop the plan. Just like for special ed, you have to be found eligible for special education, and then you can also, then you can proceed to an IEP.

Tonya: Before I move to the next question, um, just as you’re talking, I’m thinking through our kids that are twice exceptional.

So they’re, they’re in the high academic potential there, but they have a learning block. They may not be remedial students. They may still be scoring that average score. Is that child eligible for an IEP?

Heather: Absolutely. You can be twice exceptional and have an IEP and be gifted.

Helen: Okay. That’s what, yeah, I mentioned that earlier, definitely. I was seeing more of the dual classified when I left the school system three years ago.

Tonya: So that, so that student doesn’t have to have fallen behind their peers.

Heather: No, because remember, it’s not just about academics. It could be sexual emotional behavior. And also, and I don’t mean to interrupt you, but, um, there’s a misconception too in the community that Typically you don’t have a 504 and an IEP at the same time.

So if you have a 504 plan that addresses the medical accommodations, once you are found eligible for special education and develop an IEP, those, that 504 plan basically gets eaten up. into the, the IEP, you know, into those accommodations. Now, they might have a medical plan, but like you said, they have the broken leg or, you know, whatever it looks like.

They might have a medical plan that could be different, but you typically have either a 504, a 504, or an IEP. There’s really no need to have both because they, they mesh together.

Helen: And I will say this, Heather can back me up on this, but I’ve seen, it’s very rare, where if you have an IEP, and now all of a sudden, for some reason, the parent wants to come down to a father in law.

I was going to ask you about that. Um, how easy is it then to get an IEP, Heather? Because I’ve seen, very rarely, but I’ve seen that a couple times in the three years that I was doing the chair position.

Heather: Well, and it can be difficult, but my advice to anybody who’s listening that’s in that position, that if you’re, if you think that your child, Or the school is telling you they’ve mastered all of their goals and they don’t need special education anymore, which Ultimately is right what you want.

You want them to be successful. You don’t want them to have to have all of the supports Before you sign the paperwork to say that they no longer are eligible for special education Please request a comprehensive evaluation to make sure that they’re still not that impact because if you If you just say yes, they’re not eligible anymore And then two weeks down the road, they start to falter and there’s an impact again, then they have to go back through the entire process of, yes, collecting data, but signing consent, and then it’s 60 days for evaluation, and then you have 30 days after that to develop, like, it’s just, don’t, I don’t want to say don’t give it up without, don’t just be quick to give it up, per se.

Make sure that you have evidence and data to back up that that child no longer needs It’s specially designed instruction and there is not an educational impact before you say it.

Helen: It’s easier to close a 504 and then try to reopen one of those versus an IEP.

Tonya: Would you recommend, would you recommend that they, um, that they ask to maybe have the specialized services on consult for a while instead of Direct services, could they do that?

Heather: So that’s typically what I’ve seen when I was a classroom teacher. Um, so a lot of our kids maybe need small group. They need all the intensive instruction. And then we’re like, okay, well they’re making amazing progress. They are learning those advocacy skills. They’re learning those executive functioning skills.

Then we move more to the least restrictive environment or more of a consult model. Like, let me as a case manager special ed teacher just check in. But even still, at that point, I would still want to have the data to say that that child no longer requires it, because it, you, you could think all the amazing things and then things happen and then there’s like, he’s not, he or she might be masking, right?

And then you just don’t know. So prove to me that they don’t need it anymore. Well, I’m thinking too. Yeah.

Helen: Okay. By the fact that it gets harder as they,

Tonya: Well, that’s what I was going to say. You, and you have transition. Maybe they’re doing great in fourth grade, but they’re going to be going on to middle school in another year.

That, they may need that support when they get to the new environment. And as the academic rigor gets more intense with it later too. So, I, I, I was always cautioned to make sure that we kept the IEP going. And so, and I, I thought that was good advice. And there were times with more and less support through the years. with, with both of my kids, but they both graduated with an IEP in place. And, um. Right.

Heather: And it’s, it’s, it’s also yes, elementary IEPs might look different than middle school IEPs and they should look different than high school. So they’re at different levels, right? And it’s not necessarily that services or, or supports are taken away.

We want them to look different. Because a fourth grader is a different person than a sixth grader or a seventh grader. Right? And we want them to be. It’s more independent as possible. So, they might have a bigger safety net in fourth grade than they do going into middle school. It’s not that it’s less than, it’s just different.

Right? Right. We might have to change and have those conversations about how it’s different and not less than. But, excuse me, please, if you’re listening and your school team is saying they don’t need special education anymore, I would highly recommend, before you say yes, that they don’t need it anymore, Ask for the data to prove that they don’t require it anymore. You know, and ask, just ask.

Tonya: Now, when we first started, Helen, you talked about who oversees, um, or administers the, the 504. Did we talk about with the IEP who, who oversees that? We did not. Can you, can you fill that in for us?

Heather: Yes. So at your school level, you’ll have, um, and I’m going to start from kind of like a I don’t want to say bottom, that teachers are on the bottom, but like, just hierarchy of what we are. Yeah. I was a special ed teacher and I’m just like, I don’t want to say that I was on the bottom because I was on the top.

Tonya: The most directly involved to start with.

Heather: Yeah, I like that better. Um, so you have your, your special education teachers. that will have, will be the direct service provider. So that could be a math teacher, a language arts teacher.

You also could have your related services providers, which are your occupational therapy, your physical therapy, your speech and language. It could be your adaptive PE coach, um, lots of different related service providers. So they are responsible for implementing the IEP with the services that are in the IEP for their specific skillsets.

So math goals are for the math teacher. Speech and language might Combined with like a language or reading, you know, they have their own speech and language goals, but they might also be supporting in a classroom goal. Um, excuse me, occupational therapy, the same thing. They are probably supporting a writing goal or supporting sensory.

So they’re the people that are having the most direct support and are responsible for implementing the IEP, collecting data on the goals and objectives that are in that IEP, ensuring that the accommodations are being implemented with fidelity. Right above that, and I say, they have the same amount of support, but every special ed student will have a case manager that is assigned to them, so that is the person that is typically responsible for developing the IEP, making sure that the IEP meeting is scheduled, following up with the teachers, um, again, making sure that the accommodation plans are given to the teachers and the IEPs, and typically it is a teacher that the child has during the day.

It doesn’t have to be, there’s no law that says that your case manager has to be your, your language arts teacher, but it, it’s helpful when it is, because then you have direct contact with a student. So you have your, your special education teachers, you have a case manager for every special education child, um, and then you have maybe a department chair or a facilitator or a Um, head special ed person in the school, in the school itself.

So, um, in the district that I came to, we called them instructional support teachers. Um, they didn’t have instruction roles, like they weren’t teaching a class. They were there truly to manage and make sure compliance with IEPs and help teachers implement whatever the IEPs were. Um, you might have a facilitator, the same kind of things in other districts.

And then you have your district. Um, like coordinators and, um, program specialists and then you have your director of special ed and all the people that are not physically in the school system, um, in the school. So the teachers are responsible for implementing it. You have your school psychologists that are there too.

Um, a lot of our districts around here have psychologists that work maybe with a couple different districts or different, um, school teams. They’re part of the IEP team as well, so they might be there to support, um, So everybody is kind of responsible for the IEP, but it’s the teachers and the, the case manager that are the, the meat and potatoes of making sure that that document is being followed and the data is collected on those goals and objectives.

Tonya:  As we’re talking about who’s there, what role does the parent have in both of the plans? So Helen, do you want to start with the 504, with the role the parent has?

Helen: Um, well, they should definitely keep an eye on the fact that they have an annual meeting every year. Uh, maybe mark it in their calendar because even though the 504 chair hasn’t come up, Um, they, they may, you know, there’s changes and a lot of changes going on these days, right?

So that could slip through the cracks and really they like to tend to do it as it comes up. Like I, I try to do it within a couple weeks of the actual last year’s date. So, but that doesn’t mean that you as a parent can’t ask for it sooner. Just like one of my parents just did. She already did it on the second day.

And that was mainly to just kind of be proactive. And I’ve had a couple parents call me immediately and I’m like, well, am I doing meetings for a couple weeks? Um, let, let the teachers get to know your child first before they can really come in and say something about what the need is shown. So there’s a little bit of, you know, do you really want to come in too early and call for a 504 meeting or not?

If you’re seeing something serious that you know has changed and you got a different diagnosis over the summer, yes, you need to let that 504 chair know that. Once you’ve let her know, usually within a couple weeks, I’ve called a meeting to go ahead and add in that accommodation, um, instead of waiting two months.

You know, you don’t want to wait two months because there’s a lot of testing that goes on early on these days with iReady or… Gosh, people are doing map testing in the fall now, and even more so because of COVID, I think. Um, but I wanted to bring up the social worker. You should work, you know, the social worker is a good person in the building as well.

I’ve worked a lot with the social worker, and the parents get involved with her too, if need be. He, she. Um, but definitely the parents need to watch out for those dates. And you get a copy of your 504 when you leave there. Whether they’re emailing these days or handing it to them, I don’t know, but I can just tell you for sure you need to keep on top of that, mark it in your calendar, and be aware of when that date’s coming up.

Tonya: So Heather, what’s the role of the parent with the IEP?

Heather: Well, I think, um, besides the child as being the first important person in the IEP meeting, the parent’s the second. Um, you as a parent, You are the only consistent person that knows your child from beginning until end. So you are an equal member of that IEP team and you should have meaningful input at that table.

So you are that consistent, always going to be there. The gen ed teachers are going to change, the special ed teachers are going to change, the school cycle, everybody’s going to change, right? The only person that is there that’s going to be consistent is you as a parent. So your role at that table is.

It’s vital, right? You know the ins and outs of your child from birth until however old they are, right? Like, you know the ins and outs. Yes, teachers spend a lot of time with children during the day, but we don’t know them when they get home, right? You have an important role in being able to share the good, the bad, the ugly, what it actually looks like for your child.

So to me, You are one of the most important people to share information at that table about your child and your rights say that you are an equal member of the team, so you should also have the same information that the team does. You shouldn’t come to the meeting and be blindsided by an evaluation that was done that you didn’t know about or the district coordinator coming to a meeting and you’re like, why are they coming to the meeting?

Or, hey, we did this, but we didn’t know about it. You have that right. to have all of that information as you should. Again, you are an equal member of the IEP team and there should not be surprises at the table. You have the right to have all that information.

Tonya: So, I was thinking about this too. We, um, I spoke with, um, Dr. Kirk Adams and he suggested that, um, children with disabilities start taking a role in their future early on. And, and he talked about the IEP, and he said, you know, even, even as a young child, he would recommend that parents pull the child out of class to be in the meeting if it’s during the school day. Do you agree with that?

Heather: I 100 percent agree with that. Um, it’s harder for elementary kids to be able to share a lot of things, but they, keep in mind, this IEP is for them. Right. Right? So, I sat in a 504 meeting with a young lady. Well, young man and her family today, she sat in that meeting with us and she advocated for herself and it was the most amazing thing and the team was so excited that she was actually advocating for herself and had the most, like to me, when you hear a child say, I need this to be successful or I need that to be successful, or this is something that I struggle with.

That is so impactful. A mom and a dad or a grandpan or a guardian can say that until they’re blue in the face. But if you’re hearing it from a child or a young man or young adult, it is just so much more impactful. I need this to be successful. And, you know, people say, well, we can’t get our kids that maybe are nonverbal to participate.

Yes, you can. You can teach them, like I’ve had plenty of kids that I helped develop like a little PowerPoint slide that they shared about their personal information, like what they were excited about, what their favorite colors were, what their favorite activities were, maybe what their favorite reward was, like maybe like love Pokemon or something, you know, like get them as involved as you can, you know, maybe they’re not going to be, you know, talking like we are today and going on and on and on forever and ever, but get them involved.

And. It is special education and having an IEP is not a negative thing, you know, I say this a lot of times when I was in school, I feel like, and even when my parents were, you know, in school, special education was thought of as like, no offense, but the redheaded stepchild, right? Like you, you didn’t see kids with disabilities.

You didn’t, you didn’t know about it. It was kind of like, don’t, it’s this bad thing we got to hide. It’s not like that anymore. You know, your child does have unique needs and does maybe learn amazingly different, but we need to make sure that we’re tailoring that and really embracing those differences.

Because while they do have weaknesses, they have a ton of strengths that we need to focus on. And for them to come into a meeting and say, I need this, or I like this, or don’t you dare tell me and poke me on the shoulder, because that’s going to trigger me to, like, whack you. Right, right. So, like, I absolutely 100 percent agree with him that as early as you can, get them involved in their IEP meetings and teach them how to advocate for themselves.

And… Be an active role in their IEP and let’s, let’s get them invested in their plan instead of the adults doing it for you, you know, right? And I’d say the same.

Helen: I say the same for 504s. I used to pull the middle school students out of their classes or a lot of times parents would bring them in. So that’s another thing parents should do is just kind of talk to them.

Hey, I’m coming into the school today for a 504 meeting. It’s your 504 meeting. And. I’m all I’m all at the chair call you down when I’m ready for you So a lot of times we would call them down unless they’re gonna miss a test or something like that. I won’t I won’t do it Right. Yeah, definitely definitely high schoolers for sure.

Heather: Well, and they have high schoolers because you get a transition plan when you get to high school as part of your IEP and they want You to be involved But I do have a suggestion for you know families that might be listening to this and they say my child is shy But they don’t like to speak up and you know because I was that kid You probably never know it now, but I was.

I didn’t want to speak up in front of adults. I could speak to kids all day long, but you put me in front of my peers and I’m like, like just clam up. Um, they might be able to come to the meeting, but I suggest to them either dictate or write down like on a post it card, like a, you know, a little post it note, just some notes so that they don’t have to speak on the web.

They can read off of their card and say, this is what I did. So it just gives them another tool that maybe they’re shy, but they can just keep their head down. They don’t even have to look at the people in the room, but they still are there participating. Um, I also know it’s hard for some of our kids to hear the entire length of an IEP because we do have to talk about their deficits and the areas that they struggle with.

And a lot of our kids don’t want to hear that. And sometimes we just don’t need them to hear all of them, that stuff. I like to involve them as much as they can tolerate it, but I also want to see, let them share, hear the positives, give their input, and then you can dismiss them back to class. So even, they don’t have to be there for the duration of the meeting.

Some of those meetings can be, you know, two hours long. But, if they can come in and they can open up with their little PowerPoint slide, or their little note card that they brought in, and then they can just be dismissed. That’s a stepping stone for them to be there the entire time, eventually, down the road.

Helen: And a 5 that’s easier because it’s usually no more than 30 minutes. Okay. Unless it’s going to involve a bunch of people from the county and then that could go on for about an hour.

Tonya: Well, having, having two students in college right now, parents that are listening, no matter how young your child is, the sooner as, as Heather and Helena both said, the sooner you can get them involved in some way, shape or form, the earlier they’re going to learn.

That it’s okay to speak up for themselves, and they’re going to start hearing some of the words that they’re going to need to be able to use later to explain what works for them or what maybe doesn’t work for them. By the time they’re in college, they’re going to have to do all this themselves. And you can still help them, but they have to lead it by then.

And eventually, our goal is that these kids will graduate. High school, graduate college, whatever their educational path will be, and they’ll have a job of some sort. In that environment, they’re going to have to be able to know that, you know, I need to be able to take a break every so often, or I need to have, um, some, some way of muting the sound or something.

And if, if we can teach them when they’re younger during this time and to see other adults talking about it, it becomes matter of fact and just part of who you are and not a big deal whenever to that, to that point.

Heather: You’re right, and it also allows them to know what they can ask for. You know, what accommodations they do have that they’re allowed to ask their teachers for.

They shouldn’t always have to ask for it, right? But, if they know that I’m allowed to wear my headphones when it’s in, like, independent work, or I know that I’m allowed to ask for a break, then they know that ahead of time. There were so many kids, even when I was teaching, that I would say, well, do you know what your accommodations are?

And they’re like, what are you talking about? Like they had no idea. Or they would say this, right? Why are you pulling me for small group testing? And I was like, well, because you’re allowed to have that, you know, in your IEP and they just had no idea. So when they’re informed, then they can ask and say, Hey, I was supposed to have small group testing.

You know, because we make mistakes, teachers do make mistakes, there are things that, you know, if they’re supposed to have color overlays, we’re human, we might forget, so please give us some grace on that, but if a child knows that they’re supposed to have color overlays, then they might say, hey, that’s right, do you have the blue sheet that I could have?

Absolutely, so it helps them be better advocates for themselves.

Tonya: And I think it becomes more of, these are just tools that I’m using, and not a stigma against who they are. Because they’ve heard adults talk about it. They’ve heard it. It’s not this big emotional thing. This is just a little business meeting that we’re having to talk through it.

And think of the skills that our kids are learning sitting in that business meeting. They’re learning to work with a team. They’re learning to be part of a team of adults that are there. They’re the focus of what they’re talking about, but they are gaining skills just through that process.

Heather: Right. Yeah. 100%. Get them involved as early as possible at whatever that looks like for them. You know, a kindergartner is going to look different than a True. True.

Tonya: Your kindergartner may be coloring at the table instead.

Helen: And the teachers are happy when the kids are. Right. The kids being in the know, as a teacher, I’d be happy if they, like, reminded me about something.

Because if they have like 14504s in a classroom or in all their classes, it really is kind of hard to keep up with all of that. So if you don’t give somebody the extended time, you know, they’ll come up and they’ll remind you, Hey, you know, I need a little bit of extra time.

Tonya: Yeah. So. I’m thinking through here. I know we’ve been talking for a long time and I appreciate our listeners staying with us. But I think this is just it’s information I would love to have had when my kids were younger. I learned a lot of this through the years and asking a lot of questions. But I love the fact that we have both of you here to just kind of help balance this back and forth between the two.

The, we’ve, we’ve answered some of the questions that I had for you already just in our talk, which I think is good. But as we’re coming near the end here, um, I want to give you each a chance to give some final thoughts and advice that you might want to pass on, any little nuggets of truth that you want to, to, to give to our parents. And, um, Helen, I’ll let you start and then we’ll go to Heather.

Helen: Um, so I would say definitely if you see an issue going on and I think what a lot of people do, a lot of parents do, is kind of wait it out to see if things are going to get better. Um, I, I can understand that, especially if it’s a young child that you think and are hoping things are going to get better, but I wouldn’t let that ride too long.

Um, I would start talking to your pediatrician and kind of cluing them in at first. Um, always stay in touch with your teachers. Um, I don’t care if you have an IEP 504 or not. Um, especially if you know your child is having a writing issue, let’s say. Um, it’s best to go ahead and let them know ahead, so they’re clued in and they’re looking for it, right?

And then they can tell you, Hey, I noticed, I mean, I would get emails from teachers going, So and so, I’m noticing this about so and so. I talked to the mom. They might be contacting you as a 504 chair because I think they’re, you know, teachers are never going to say your child has ADHD or your child has this because they’re not medical doctors.

They’re not going to diagnose it as a company. I tend to say a little bit more because I always preface that by saying I’ve seen a lot and I’m suspicious that this might be going on and this is what you need to start doing because we’ll get involved with the teacher also on email. To keep abreast of what’s going on in the classroom, so I believe it takes a village, so it’s the parent, the tutor, and, uh, the teacher.

So then they are comfortable now with us and they’ll say something to us too, because they know we’re educators. So, I’d say jump, uh, you know, stay on top of it, be proactive, not reactive. Nice.

Tonya: Heather, you want to add to that?

Heather: Sure. So, you know, you earlier said that I was a master IEP coach and, and I am, and, um, you know, most people are like, well, what does that do?

What do you do? And again, I don’t like to call myself an advocate because     comes with this adversarial kind of negative connotation and I, I come from a place of collaboration. But I also want to tell families, like, you know your child best, and I said that earlier, you are the most consistent person that’s going to be at that IEC table.

If you, if you feel like you have your intuition that something’s not right, please speak up. Please ask those questions. You aren’t alone. There are people out there like myself that can support you and help you get through, maybe decipher what does that, that gut feeling, that little like. Um, I’m not sure.

What does that look like? Feeling there are people out there. I also get asked a lot, when is a good time to reach out to somebody like myself? And I, I tell you, never, it’s never a bad time to, to reach out to somebody like myself. Like you don’t have to wait until you’re so angry that you’re, that you’re seeing red all the time.

It could be when you’re just like, things are going great, but I just wanna make sure, is there something else I could be doing differently or, Are we on the right track here? Because keep in mind that an IEP supports future education, employment, and independent living. So we need to make sure that we’re addressing all of those skills to get to a point, because eventually they’re not going to be in high school anymore, right?

So we need to make sure that we’re developing those skills, but you don’t have to wait to reach out to somebody like myself. Wait, don’t wait until it gets to be so bad that you’re you’re so frustrated with the team. Yes, please do it if you are there, but it also can be that you are. I work with families that are brand new to special education.

Like my youngest family right now is a 4 year old family. They’re getting into special education. Early on, and my eldest, um, is an 11th grader, so like I work the gamut, um, of, of needs, but it’s never too late, never too early to ask for support on, um, Interpreting what an IEP is and what special education is because, Tonya, you know this as a parent of children that went through the process, there’s just so much, like, acronyms out the wazoo, like, you don’t know what you’re saying. Right?

Helen: And it confuses teachers, too. Yes.

Tonya: And it keeps changing.

Heather: Exactly, like RTI is this today and it’s that something different, you know, tomorrow, but I’m almost like an interpreter that I can look at something and interpret it into like language that a parent can understand. So please reach out. There is support out there.

Don’t wait until you’re so frustrated to get support, you know, please ask for help as much as you can. But again, you as the parent knows your child best and if you feel like you need some help. Ask. Ask your team. Communicate, just like Helen said. Communicate with your team. Um, there are people there to listen.

Helen: And  speak with other parents, too, because there’s a lot of parent groups, and that’ll kind of clue parents into what’s happening, because they’ve already experienced it, like yourself, Tonya, right? Right. Um, so, yeah, I would definitely say, another thing I want to add is, um, I love school systems and I love teachers and I’m not blaming them at all for what’s happening here, but they are not trained, um, to know all this.

So, you know, be aware of that and know even the counselors, they’re probably a little more trained, but don’t take everything you hear at the school to heart. Like, you don’t think there’s nothing more. That’s when you reach out to Heather and myself and ask more questions, like she said. Right.

Tonya: The, um. Some of our parents may have questions for you with us.

What’s the best way to get in touch, in touch with you? Helen, I’m going to let you go first because I want you to talk about, about the company and then, um, Share any, any contacts for links or anything like that and anything that they share, listeners, I’m going to put it in the show notes and in the description.

So you’ll be able to find it, um, but go and tell us that first and then Heather add to that anything else that, that, that’s still missing at that point. Cause, cause I know you both have some things together and some, something separate.

Helen: Yeah. Um, so, uh, they can reach me through going to my website and I have a contact us page there and they can fill it out right there and say what they’re wondering about, but it’s It’s info at I nfo at the company name Dynamis Learning.

I still have academy.com in there, even though I’ve changed it to Dynamis learning, uh, and drop the academy. But the U R L is still that way. Okay. So it’s [email protected] or you can go to the website and go to contact us and fill it out there. It’s gonna come to that same email. Um, okay, so I, I just wanna let you know I will jump into any 5 0 4 meetings and I’ve done that.

Um, and as we’re tutoring kids, if I see that I believe that’s the need being shown, I will nicely nudge people to go that way. Or I’ll contact Heather, because I think I might have sent her the four year old.

I didn’t even know myself a four-year-old could have an IEP.

Tonya: Alright, so Heather, what is your contact information?

Heather: Yeah, so if you have questions about, you know, 504 plans or IEPs, um, please visit my website, HeatherWrightConsultant. com, so, um, my first and last name, it is W R I G H T Consultant dot com. And on there, there are some free resources that you can download that I have available for you.

You just need to enter your email address. You can also schedule, um, a 30 minute free phone consultation with me, and I suggest that to all families. Reach out to me. There is no obligation. I would not be able to sell a ladder to a fireman if there was a fire, so I’m not going to force you into doing anything with me.

But, why not reach out and say, hey, can you support this or support, you know, I’m having trouble with this in the school system. Reach out to me on my website. Like I said, Heather Wright consultant. com. Um, Helen and I are going to be doing a collaborative webinar, probably October. I think we’re, we were planning September, but I think we’re going to have to push it to October.

Um, really diving in a little bit more deep into it. IEP is in 504. So if you want to get on that list to make sure that you get the no, either reach out to Helen or you can reach out to me on my website again. Um, and I will be doing some free parent trainings in the next. Probably a couple months. I haven’t set the exact dates yet, but if you’re looking for maybe how to communicate better with your, your school team or how do I write a parent input statement?

And I know we didn’t talk about that, but if you need more information about that, you know, reach out to me so you can get on my list for those free parent trainings. And if you want on the one for Helen and I. . Um, again, reach out to her at [email protected] or you can reach out again, Heather Wright consultant.com.

And I am on Instagram and Facebook at Heather Wright consult. So you can follow me there too.

Tonya: Okay. All right. So we’ll have just a list of all these contacts so you, you can go down and find them one way or another and, and if you’re on Instagram or Facebook, go ahead and, and follow them so that you can keep, keep up with what they’re, what they’re feeding back through that too, the.

Um, so you mentioned the, the training. What other projects do you have going on right now? I know you’re doing a lot of IEP and 504 meetings, I’m sure, but, but what else is going on?

Helen: I also have an advocacy brochure, and I have, if I haven’t given you that link, Tonya, I’ll provide that for you. Oh yeah, please do.

So they can just download that and, and get that, because that explains some things in terms of how that, what, what it is, how does that work.

Tonya: And then, um, Helen, tell us about your podcast. She’s, she’s another podcaster, so I want you to hear about what she’s doing there.

Helen: Oh, yes. The podcast is called Smart Parents Successful Students Podcast, and it’s on Spotify and other areas.

So, I usually have guests on there. Sometimes I’m even interviewing my own tutors or myself. Uh, and we talk about all kinds of topics, from SAT, ACT prep, to tutoring, to 504s, to IEPs, to… Helping parents out with self care even than moms. I’m rolling out my 95th Season right now. So the next one will be five more and i’ll hit i’m gonna have a party at 100 episode.

Wow You know, hopefully be a part of those last five right there hitting the hundred There’s already been a guest so we’ll have a party.

Heather: I wanted to thank tonya for having me on today and helen for seeing you I love always seeing your face, but thank you Helen and Tonya today.

Helen: Yes. Thank you, Tonya. Appreciate it. All right.

Tonya: Thank you. I appreciate you both being here and sharing your expertise on the 504 plans and the IEPs. It’s been incredibly informative and I think our families will really get a lot out of this. So thank you both.

The post Episode #79: IEPs vs 504 Plans: Understanding the Differences appeared first on Water Prairie.

Special needs parenting is hard! You can get lost in the process of helping your child through all the stages of growing up, and many parents lose themselves along the way. Our guest in this episode, Megan Gibson, understands how parenting challenges can cause a special needs parent to feel like they get lost along the way, and she’s made it her mission to help others find the freedom to be themselves.

Find the full directory at waterprairie.com/listen.

Special needs parenting is hard! You can get lost in the process of helping your child through all the stages of growing up, and many parents lose themselves along the way. Our guest in this episode, Megan Gibson, understands how parenting challenges can cause a special needs parent to feel like they get lost along the way, and she’s made it her mission to help others find the freedom to be themselves.

During this interview, Megan emphasizes the importance of staying true to your values and vision as a parent, even in the face of criticism or uncertainty. Throughout the conversation, Megan discusses her relationships, both past and present, highlighting the importance of surrounding oneself with supportive people who share your values and vision. She also touches on the difficulty of the transition when your children become more independent and offers guidance on navigating this challenging stage.

Overall, Megan’s journey is a testament to the power of resilience, self-awareness, and the importance of staying true to your values as a parent. Her story is not just about parenting; it’s about personal growth, transformation, and self-discovery. Megan’s willingness to share her experiences is both heartwarming and enlightening, offering hope and guidance to others on their parenting and self-improvement journeys.

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Megan Gibson is an Identity + Alignment Coach, Podcaster and Writer. An expert in the transformative journey of deep self-discovery, Megan’s specially formulated one-to-one process guides individuals to uncover deeply held intrinsic values and unique gifts. As a mother with grown up children, she understands the importance of leading by example in a world that lacks authenticity and vulnerability. Through the Freed To Be You Podcast, Megan inspires women to imagine a life and business where they no longer have to pretend to be something they’re not. Instead, she empowers us to embrace our authentic selves, step out of self abandonment and into full self expression. As a speaker, Megan shares profound insights and practical tools for unlocking personal clarity and emphasizes the importance of aligning one’s life and business with your values and vision, enabling you to take ownership and create the life you desire.

Full Transcript of Interview:

Tonya: Meg’s welcome to Water Prairie.

Megan: Thank you for having me.

You’re welcome. We, um, if you’re listening, um, Megs and I met about a week ago. Well, we met before that, but we, we recorded another podcast about a week ago. And um, and I’ll link that one in the notes here.

So if you want to hear the other side of this conversation on, on that one, it, um, it was, it was a fun, a fun time getting to know each other a little bit more. And I’ve been looking forward to continuing our conversation on this one. So, um. So listeners, we’ve been, if you’ve been following us for this season, we’ve been asking each of our guests to come in with three facts to kind of get you a chance to get to know them a little bit better.

And Megs has agreed to play our game of two truths and a lie with us today. And so she’s gonna be sharing three facts or pseudo facts, however you want to look at it. With us and your job as a listener is to decide which of the three is actually a lie. And you can either put your comments in the YouTube, um, comments down below, if you’re watching that.

If you’re listening or reading on the website, then you can go to our social media, to Instagram or to Twitter, and leave your guess on the, on the post that matches this episode. So Megs, what are your three facts that you wanna share with us?

All right. So first one is that I started out as a hairdresser. The second one is that I hate the outdoors. And the third one is that I was a vegetarian for four years.

Wow. Okay. So there’s a very different types up there.

Our topic today, um, is a little bit different from what we’ve done before. I wanted to focus after, after meeting Megs and talking about what she’s doing with her podcast, I wanted to bring her on and to talk a little bit about the health of our parents, because a lot of times we tend to lose ourselves.

In focusing on, on these little bundles of joy that come in with sometimes a lot of questions and, um, and if you’re a parent who’s listening to this, more than likely you have a child who has some extra questions involved. And so I thought we’d start, Megs, by having you share your personal story as a parent.

And then we’ll kind of jump off from there. So could you tell us a little bit about like your, your, your own journey? Cause you have more than one child. You’re going to be surprised, listeners, to hear how many she has.

Well, I have three that I have birthed myself and I have, uh, four that I’m lucky enough to, uh, to bring up with their dad. So seven all together now. Most of them are over 15 now.

One little one that’s eight. So it’s, it’s a busy house, but it obviously started out with one of those. Uh, so I actually became a mother when I was 23, uh, 24, my bad. Uh, and I always wanted to be a mom. It’s just something that I know not every woman is like this or not every girl is like this, but when I was little, I always wanted to be a mom and I wanted to be a great mom, of course.

And so. Um, I’m not, I don’t regret starting that journey at that young age at all. I was already married for nine years by that point, so I started early.

Nine years.

Yeah, I know. Yes, I was a baby. Um, so yeah, when he, when my first one came along, I. I just felt like I remember holding him and just feeling so the only, like someone said, how do you feel?

And I said, clever. That was just the word that came to mind. Like I just created this and birthed this, you know, he was eight pound five. I think it was, uh, so he’s a big bundle of perfect perfection. Um, and he was the most calmest baby and. It was amazing. And I, I did leave the hospital though and struggle to, um, to feed him and with a number of other things.

I was away from my family at the time. And, uh, he’s 21 in October now. So this is a long time ago. Uh, you can do the math and work out. But I, I did end up with, uh, with postnatal depression. And so that was a journey in and of itself for me as I’m becoming a mom. Um, but Riley, my oldest one, is still very calm, uh, loving, empathetic, giving young man.

Uh, and so he was my eldest, and then about 19 months later, I gave birth to my second son. Now, backing up a minute, I all, I really wanted a daughter as well. I wanted one of each. I actually ended up wanting four until, uh, I share the next part of my journey. Yeah, I always wanted a daughter. And so when I found out halfway through, when I had the scan found out that he was a boy, I was upset about that.

And so then I think my, my postpartum depression started before I had him with, with him because I felt so bad for feeling that way. Right about, you know, uh, and so the reason I shared this part of my, that part of my journey is because it really, I don’t know that I got over that until a lot later, um, because it did, it did.

Creep back in often that those down feelings and those feelings of not being a good enough mom and not being good enough in general, and so when Levi was born, it was pretty traumatic. His entry to the world was more traumatic and that he actually broke his collarbone During the birth. So that was and I’ve always kind of thought that You know, that, that has contributed to some of the things that he’s struggled with in his life.

I don’t know if you’ve looked into any of that, but I’ve definitely, you know, found studies that, that have proved that a difficult birth does tend to, you know, contribute to things later in life. So, but I, I loved him immediately, of course, uh, and I fell back into that, that role of trying to be the best mum I could be and get through my, you know, how I was feeling about it.

Um, And, as he got older, I found that he’s different, different to Riley. He was a lot more spirited, even as like a toddler. He was a lot more get up, he had a lot more get up and go. He was a lot more, um, assertive in the things that he wanted and didn’t want. Uh, which, you know, I just thought, well, they’re just different.

They’re all different. And I didn’t think anything about that. Until he, uh, was around four and not to get controversial, but I feel like he immediately changed overnight when he had his four year old immunizations in Australia. That’s all. And I, I know that that’s different to you guys, but we have like, there’s a whole bunch of them that they have at four and I, I noticed him change.

He started having, um, meltdowns that were this, just, it was, I mean, if you’re listening and you’ve had a, you have a child who’s literally just broken down in front of you and you have no idea what’s going on or what’s caused it or how to deal with it. And you already felt how I felt about. Being a mom, which is the opposite to how I dreamed about it as a girl, uh, it was really, really hard.

And so I already had another child by this stage, my third child, who was the daughter that I wanted, and she was as calm as the first one. She’s even calmer than, um, my oldest one. And so that’s when I kind of realized, like, something’s not right here. Uh, and it was around the time that he went to kindergarten.

Um, obviously, like again, I’m not sure when your guys go to kindergarten, but in Australia they go at four and he didn’t want to leave me. He didn’t want to, he was just, he was this child who was full of contradiction. Like he wanted to do everything himself and he wanted to do everything his own way, but he never wanted to be away from me.

And so there was this real separation anxiety that took place. And I think now knowing what I know, it was just that he, he didn’t. the world the way that we do. He, he had, he has, and still he’s 19 now, very, uh, tunnel vision on how he thinks things should be. And he’s always been like that. So he, um, he struggled going into school and that’s kind of when I, when I started to, to think, look, there’s something not right.

And perhaps we should, um, you know, see if we can get a diagnosis because he started. You know, preparatory school the following year, and there was no way he was going to get any help without that. Again, that’s how it is here. So, I did start going down that road and had this real contradiction, which I now understand a lot more having done some of the work that I’ve done on myself and now do with others.

I really didn’t want to have a label for him. Uh, but I did get a diagnosis and he was diagnosed with high functioning Aspergers and ADHD. And so he’s, he’s really, he’s still a very emotional child, like, as in, like, he’s, he’s a lot better now, obviously, but at that point he was very emotional, he didn’t, he would, one minute he would be fine, and the next minute he would be, you know, on the floor, or throwing things, or whatever, and so one of the things that I really struggled with, At that part in the journey was how that reflected on me.

And so there was this kind of like circle cycle that I would get in where I’m trying to help him. And this stuff would happen in public, it would happen in, you know, in the schoolyard or in the, you know, waiting to go into class, coming out of class, a lot coming out of class because he was just so overstimulated.

Uh, and so I felt, I started to feel ashamed of it and really it affected my, how I viewed myself and then that in turn affected how I parented and then it was just this cycle of, You know, not very nice feelings, which, as I said earlier, were never really dealt with as well as they could be because I had started, you know, with that depression that I had after becoming a mum.

So. Yeah, like that was kind of my, my intro into this world that we’re gonna dive into a little bit more. And so it really did affect what the dream and the vision that I had. Of what my journey through motherhood was going to be like, and what type of mother I was going to be, and, uh, you know, all the things.

And I, you talk about, you know, dreaming when you’re little, I think, I don’t know. I, I, I meet women who didn’t have that, but from the time I was born, it was like, I was going to be a mom one day. That was just how it, you know, I took care of everybody else’s children. I was, my mom talks about me being like 10 and 11 and all the children in the neighborhood be following me around everywhere because it was just, I was, I was the one everybody called to babysit.

It was just. Just that, that mom and um, and so it, I think a lot of times that is hard, especially when we end up with a child who has a diagnosis of some type, it, it goes against what we, what we pictured. Um, so, um, and then here you have three children and you’re still young, you’re still in your twenties during all this time with it.

Um, so, so to clarify, so in the States when the child turns five by September 1st, they start kindergarten. So you start. During preschool really, what, so some of ours will go to preschool and some will stay home until that point. Um, if our children have been diagnosed with a disability, then they will go at three to a public preschool, where they help to kind of get them ready, and that’s where they can provide therapies that they need during that time.

That’s amazing.

And then you talked about the preparatory, is that the next year after the kindergarten?

Uh, yeah, so prep is, uh, like your preschool. So we have kindergarten and then we have prep, preparatory, yeah, and then grade one. And so, uh, yeah, so we have a kind of.

So here it would be a preschool, a kindergarten and then grade one.

Okay. So just to kind of figure out where, where we are during that time. And then, um, so you don’t have the earlier MMR vaccinations at all. You have them later.

We do. We do.

You had them earlier too.

Even with a whole bunch of other things at ball.

Okay. So, so before they go into this public setting, they’re getting all their vaccinations ready, I guess.

Okay. So just to kind of, kind of put all that together. The majority of our listeners are in the U. S., but we do have them around different areas. And as we’re finding, whether you’re in Canada or wherever you may be, everything’s a little bit different. And what our. processes if your child’s in the public, uh, educational setting.

So thanks for clarifying that. So, so at this point, so you’re in your mid to late twenties now you have three children at home. You have a diagnosis. Now, how did you wrap your head around? Did, did you understand anything about Asperger’s or about autism at that time?

No, but I am somebody who. It is a bit of a sponge.

I love to learn. Okay. I like to understand how, uh, things work and why they are the way they are. Right. Um, I’m like that with human beings too. We’ll talk about that later. Um, but I, I did. I wanted to fix it because I was struggling. I didn’t know how to handle it. Um, I was, you know, on that cycle. So one of the things that I was very lucky to be pointed in the direction of this place called, they’re called Minds and Hearts and they specifically work with kids on the spectrum.

And so they met with the parents and the children separately and together, so I would have, um, half an hour to sort of talk to, to the therapist by myself. And that’s usually the point where I would cry a lot, uh, and write everything out and tell her how it’s been since the last session. And, um, and then she would have, uh, a good half an hour with him and he would, they would do, um, that he would have a chance to talk without me there.

Um, but he would also do, and this is from like when he was like five years old and they would do, um, drawing and play games and, and, you know, set up, focus on strategies to help him deal with the world around him, basically, um, more than, more so than deal with himself as to help him understand the world because one of the things that I’ve, uh, I came to learn is that they, they don’t really see things outside of their own, um, The way they see it is the way that it is.

So when things aren’t that way, that’s when they get triggered. Right? So she taught him how to understand the world around him so that he could relate to it differently. And I really loved that because I feel like that’s a very growth mindset space to be moving into immediately with this. So it was a really good organization.

I know there’s a lot of different ones out there and different ways of, you know, helping, uh, helping kids and helping parents, but I really loved their approach. Uh, and then, as he got older, and he started, uh, getting those boosts of testosterone that little boys get, then he started getting a little bit more, um, I don’t want to say violent, because he’s not violent.

He just, he just, it was, he was bigger, and he was louder, and it was more assertive, and so therefore it needed. different kind of attention, right? Because you can get out of hand. And so I was recommended go and see a pediatrician and they decided that they would put him on some medication. And let’s just say it was the worst nine months of my life and his, uh, without going into too much detail because I want to get back to, you know, what we’re talking about, but he ended up going from, you know, everything that we were dealing with. He would be, I would give him the medication in the morning, and then he would go to work, go to work, go to school, sorry, go to school, numbed out, and by the time, it only lasted six hours, by the time he got home it had worn off and Everything that he didn’t have, hadn’t had to deal with during the day hit at once.

So it was just a nightmare. So then they put him on another one that didn’t wear, wear off. And he wasn’t, it was actually for children, he was only 8 or 9 at the time. And you weren’t supposed to have it unless you were 14. He was also quite small, so they kind of, you know, had to cut the, the tablet up so that it was the right dose.

And anyway, long story short, he ended up suicidal. And that was terrifying. Yeah. So we got him off of that real fast. And, uh, and, and I actually. They said, you can’t take him off it, um, quickly. You need to wean him off it. Otherwise this can happen and that can happen. And I basically went home and threw them in the bin and let him run around in his underwear for six months.

We pulled him out of school and, and he was fine. He was fine. So I think what I learned from that was that I know my child, even though I didn’t understand what was happening, I learned a lot, a lot about what was happening. You have to go with your gut. I really learned to trust my instincts as a mom through that journey because it, yeah, there’s so many people that are speaking into your space, like different experts, different doctors, different therapists, and we have to trust our instincts.

And so I really had to learn how to do that as a mom because we do that anyway, whether we have children like that or not. And so I really had to do that one. And the biggest thing that was always playing in the back of my mind is how this was affecting my other two Children because I, my life revolved or our life revolved around, um, around him.

So, you know, they, they got the scraps of me a lot of the time because I really felt like that. And so then I had to deal with that, how I felt about that as well. Yeah. And so getting that education and understanding what was happening, uh, for me, it allowed me to tap into my own instincts as a mother. Does that make sense?

Yeah. Absolutely. We, we talk a lot of times about, and almost all of my parent interviews have been similar with us where you come to the point where you have to learn to go by your instincts. As, as, as you said, you know, your child you’re with this child 24 hours a day. A lot of times, you know, more of what, what’s going on. And you have a better chance of hearing what your child’s telling you than someone else because you can, you can read between the lines sometimes. And um, and so I, so a lot of, a lot of parents are saying the same thing. I came to the same thing myself. So um, so yes, I, I appreciate you pointing that part out because I think our new parents need to hear that they can trust themselves and um, they, they may need to get some education as they’re going through this, but, but they, they have a, as you say, a gut instinct.

They know kind of where they’re going there.

So, um, so thinking of it that way, how can parents find the balance between caring for the child, and as you say, not only caring for their child, but for their children, in your case. And. And many of our parents and also nurturing themselves because you’re so vested in him. And it sounds like at this point you were just so focused just in trying to help him survive because he was having trouble with the medications and with getting that balance.

And I’m sure. With just the insane, intense reactions that were happening with that first medication by the time he’s home and trying to do homework and family time, it affects everything. How do parents find that balance between all that care and the energy they have to put into their children and taking care of themselves and their own interests and their own passions?

Oh, that’s such a great question. As I got further into the journey and he got older and like after that medication, like after that point where we got him off everything in that six months that he was home. I changed his diet. I started to look for more, because it was medication, right? So then I started to look for more natural ways that I could help him because obviously that was something was happening chemically in the body, which is why they were trying to fix that.

So I started going down that road and as I got more into that space, I learned a lot about my own Mental health, my own physical health as well and what, the anxiety that I was dealing with because I would have so much anxiety, uh, about what was going to happen at any given moment, obviously as he got older, not so much, but definitely in this particular part of the journey that I was just referring to that I couldn’t even deal with myself.

So I had to deal with myself though. And so when we had that six months where we just had a reset. And all my kids, I took them all out and I homeschooled them all for six months. Um, I didn’t make them, they all wanted to do that. So, that’s what we did. And we had so much fun. We had so much fun because all the pressure of having to make lunches and be there at a certain time and um, do homework and do all of these things.

They were gone. And so I got a chance to be with my other children and I got it and they got a chance to see Levi differently as well because He didn’t have all those added pressures So we kind of flew under the radar a little bit and we just did our own thing for six months and then We looked at food and we, we cooked together and we all went on that journey together and everything changed after that.

So I’m not saying that we never had another issue. We did, but I approached them very differently. And one of the things I uncovered was that I needed to focus more on me. So I needed to make sure that I was doing something. Outside of, uh, you know, outside of looking after him and that I was looking, uh, spending quality one on one time with the other two and all of that.

And so one of the things I did, and that’s not in everyone’s capacity, but at the time I was able to do is I actually got an au pair. So an au pair is a nanny that comes to live with you. So I invested, it was 12, 000, Australian dollars, for the year. Uh, I didn’t have to pay it all at once, I paid it each month.

Uh, for this, this girl to come and live with us. She was from Germany, so she was very strong, which was a very good thing. Um, but she came and, and lived with us and became part of our family. And she, I, I still tell her this now, she’s just got married herself. And, uh, she’s in her thirties now, but… She saved my life because it allowed me to, uh, to focus.

I had a little side hustle that I’d started on the side and it allowed me to go out and. Um, and have time for me and achieve something again and feel like I had something outside of everything that was going on. It also at the time, I haven’t really talked about this, but it took a big toll on my relationship as well.

Uh, you know, obviously, so, you know, it gave us time to, to spend together at that point. Um. It just helped so much. It really, really helped so much. So obviously, maybe you can’t go to that expense or go to that much of an effort, but the point I’m making is that I had to make time for myself. That’s the way that I chose to do it, the way I had to do it at the time.

But if you’ve got family or friends or someone around you that can just actually, you know, take the pressure off or you put time in your diary to make sure that you spend time with your other children, then… Do it because that’s the biggest thing was just kind of I realized that in that time in that reset time That that’s what I needed And so that was yeah, that was a really good decision to do that.

And and once I Experienced that I’ve always had something on the side now when I say that I mean I’ve Been in sales for over 15 years I’ve always sold, uh, you know, have a little side hobby on the side. I’ve sold jewelry. I’ve sold, um, Tupperware. I have sold thermomixers, if you know what they are.

They’re like a, um, a mixer machine. Uh, so many things. Skincare and, and yeah, I earned a little bit of money doing those things, but it really wasn’t about the money. It was about me getting out and being around adults and achieving something and I could run those businesses on, in my own time, on my own calendar because it wasn’t working for anybody else, but it could just be something as simple as, you know, just taking an art class or a dance class or whatever it is that, you know, you’re interested in, but I, you have to make time for it.

It’s just, there’s no, It’s not going to happen otherwise, you know what I mean?

And, and you’re mentioning, you know, that, that you were fortunate in being able to have, have someone come in. We were going to call it a nanny coming in, but having an au pair, um, but parents are listening. You may not have that, but as Meg said, you may have family, you may have friends, you may have a neighbor, maybe someone that you could swap time with where you take their kids one day and they take yours, but then you could, could have that time.

Um, and maybe even having a night out with, with your, your, your, your spouse as well so that you can have that time. Cause, cause we do know it, it takes a toll on relationships because you’re so focused on, on the kids. And especially if you have a really intense child, like, like you’re describing here, It takes a lot of energy.

And, um, so taking, taking that time there, but I was thinking too, here in the States at least, um, some parents may have access to a respite program where they, especially if their child is maybe, um, medically fragile, where they, they need specialized care, they may be able to plug in to there. So, so parents, um, check some of the other episodes where we’ve talked about the same or check with your state and see what they, what they provide for you.

You may have some type of, of benefits there. for under your child’s name to be able to have somebody come in. Um, so yeah, so, so finding those practical ways to, to get that coverage so that you can take the time for yourself. And even your example of saying, you know, you, you weren’t going away to work every day.

You’re working, you know, you’re, you’re still there accessible to the children if something were to come up. But finding that, that time. And I know you’re doing the podcast now too. I know for me, even though my kids are in college. They’ve been home this summer so, so the house has been full, but doing this is, is part of my relaxation.

So, you know, it may be work, but sometimes work can be just that communication with other adults and getting out. I can remember when my kids were little going to the grocery store sometimes was my time away just to, and it wasn’t talking to many people, but I was out of the house and I was doing an adult thing instead of just a child thing all the time.

Totally.

So, so we talked about finding time for yourselves. We talked about, about that. Um, can you give us, I know we, and we, those are some practical steps there, but can you give us some other practical steps or strategies, um, as far as finding who you were, getting your focus off the kids? So work was one.

Did you have anything, anything else that, that you have or are trying that are working for you?

Well, I’m on the other side of the journey now, in terms, like, he’s a fully functioning adult now at 19. Uh, there’s a lot I’m doing now, but leading up to where I am now, I, I wanted to get to know him differently as well. And so I, before I answer this question fully, I do want to say, because it’s quite possible that he may listen to this himself, that he has always been, Outside of that, fun.

I’ve always said that’s lucky that he was so cute because that made it all easier. But he’s super smart. He’s a really, really, really intelligent. And so what I always struggled with was the gap between his emotional intelligence and his IQ. So that’s where, especially with, um, with Aspergers and high functioning Aspergers is they’re so smart.

They really are. They really are so smart, but they are emotionally, they’re a lot younger than, than they actually are. And so as well as that, they get older, so they look a lot older than, than they’re acting.

Right, right.

And I’m leading somewhere with this. Where I’m going with this is, I started to understand that more.

And I started to obviously do some of my own work. I’ve always been really fascinated with human behavior, never really got the chance until sort of this next period I’m talking about to really kind of look into that that much. But I am now an alignment coach or a life alignment coach, which basically means that I help people uncover their true identity, like who they really are, uh, and, and unpack the past and find the rescue, all the gold and the wisdom that, that there’s, you know, that’s been intrinsically placed there from all the things that we’ve been through and repack that in a way that serves us moving forward. So there’s a lot of gold in my story.

There’s a lot of wisdom in my story that I didn’t view that way. At this point in time, I didn’t really like thinking about it. It was hard. It was traumatic. There was anxiety. There was all these things. And when I started getting into what I’m doing now, which was about eight years ago, I saw the value in it and I saw the things that I’d learned.

And I really. started to go on that journey and so what I want to get at is that if even if you’re struggling right now and It feels like you know Heavy and hard there’s a lot of things that you’re learning that you’re maybe not aware of right now, and so when I got into coaching I I had to walk my talk, let’s say that I’m not somebody who can work with anybody who’s not doing what they’re telling me to do.

So I had to be that kind of coach as well. Uh, I really started to go deeper with my own work, understand myself better and free myself up from the guilt and the shame and all the feelings that I talked about earlier and see how much I had to offer the world. And so, that part of, this part of my journey has really been about healing myself.

So coming through, healing, understanding myself, as he got older he didn’t need me as much. Right, so I did a lot of mindset work with him in his sort of mid to, early to mid teens. Um, where we would just reflect something would happen and he would handle it how he handled it. Which was not always the best way.

And when we would wait, I would wait until he was calm and then I would sit down and I would just talk to him about it and we would just get introspective. I taught him how to be introspective and reflect back what he thinks he could have done differently and how he would do it next time. And look, it didn’t always work.

It’s taken a long time to get, but he is now gone from, from a child who is not very naturally empathetic. He’s a lot more empathetic now. Is he as empathetic as my daughter? No, she’s very very empathetic But he’s a lot better than he is now and I really put this down to like just stepping into that myself like stepping into that journey myself and then taking him with me and Helping him understand the good things about himself, you know Helping him understand what the positive things about how he is like he’s really really smart He picks things up really easily, but he has to be, he has to want to do it.

So there’s a lot of him realizing like, you know, some things we have to, sometimes we have to do things we don’t like, but we can choose to do them and then we might enjoy them more. Right, right. So helping me understand himself, but also me understanding me more. And so that’s really led to, uh, I really want people, and him as well, and especially people who, Who a little bit more neurodiverse like he is where I want them to see the value that they have.

I want them to really understand that they have something unique that’s, that they can offer the world and don’t have to be like that to like everybody. So now what I, I do is I help mums who are over 40 who feel that void of their children getting older. Right? Uh, for me, it was a massive void because once he was older and he didn’t need me.

Like you could see he, there was a lot that I didn’t have to do anymore. It was a big void. Um, so when I, who am I without that? Because that was a big part of my life, I had to rediscover who I was without that. But we all go through that, men too. We all go through that, um, without getting into the detail, cause it’s not what we’re talking about.

But I also lost, um, my marriage and through all of this, so that was another void that was created that I had to rediscover who I was without that relationship, without needing to be his full time carer, which I’m super proud of that, you know, I am genuinely proud of the man that he is, my son I’m talking about, um, because it’s been a lot of work for him to, he has a license.

He gets around. He wants to be a DJ. He’s got all these dreams and aspirations, and he’s fine. I didn’t think it would turn out that way. So, you know, celebrating him and then getting to know me. And so now I really want to help other women, mums with all the kids, mums with what I’ve been through, what I’ve been through.

Rediscover their identity, their sense of self in a way that helps them feel inspired by themselves as well, freed them up to be themselves and then have the second half of their life, which is we’re only halfway through, right? Be amazing and do something with all that beautiful wisdom that we’ve gained through that journey.

That’s unique to us.

But I think in a, you’ve described what a lot of our parents can, can connect with, whether they’re in the throes of that toddler time, preschool time, elementary time, even we’re so focused on helping our kids because they have, some of them are just, they’re just very tightly wound and they just need some protection and shelter.

And then we need, as you say, we need to help them kind of learn how to integrate into the world, because the world is there. They, they have to live in this world somehow. You’ve, you’ve accomplished a lot by the time you get this child. Into high school and and beyond. So now at 19, almost 20, you know, you, you, you can hear it in your voice.

You’re proud of who he’s become. He’s who he is though, because of your leadership and your guidance and helping him get to this point. So the two of you have worked together. He’s, he’s taught you a lot through the years, but totally my biggest that you taught him as well. . .

He is definitely my biggest teacher for sure.

Yeah.

So, so I love what you’re doing because you’re, you’re in a position to be able to help these moms. who may not see the value that they’ve had, the strength that they’ve brought through these years to start maybe redirecting that into investing into who they are and what difference they can make beyond just, just their little family and to the world around them too.

So, um, so I think it’s really important. It’s exciting what you have the chance to do now. And because you started so young, so you’re, you’re still young to be able to do this.

Yes, I am very blessed in that way.

But of course, of course, you said you still have an eight year old, so you’re not quite done yet.

Oh no, no, no. Well, yes, I do. I do. We now have Luke’s eight year old, so my youngest is 15. Uh, I, we get to do it all again together, so yeah, my new partner and I are very, one of the, you know, one of the things that I love about him is that we’re both kids first. It was one of the things that we connected over pretty much straight away and wanted to know more about each other because of that.

So we have them all under the one roof every second week, which we love and yeah, we, we often say we get, we get to do that again with him, you know, like bring him up together and his mum is amazing too, by the way, he’s excellent. Um, so we’re very lucky, but, uh, yeah, he’s a cutie. That’s for sure. Very, very different to mine.

Great. So we talked a little bit earlier about getting the respite care, having someone give you that break. Um, can you talk any about finding that supportive network? Um, especially cause, cause now you, you’ve been through change, not only in you pulled the kids home. During that time, just to kind of regroup and we, we did a similar thing with our family as well when they were a little bit older, um, which was one of the, it’s my favorite year of the kids growing up because we had that time together and, um, but.

So you had that you also had other change because because you were talking about your relationship And so you would have been by yourself for a while during that time before before you had your your current partner So that supportive network those times of change how how important is that network?

And how do you find that supportive network or are you able to speak to that?

Yeah, no, I can I was, I was pretty lucky, actually, to be honest. Um, well, there’s not really any luck in the world, is there? It’s labor under correct knowledge. Uh, but I, I was, I’m, I’m some, I love people. So I am somebody who I’m not afraid to, to reach out to those around me and.

And, um, you know, and say what I need a lot better at it now than I used to be, but, um, I always had people around around me. So I had a supportive, uh, family at the time, but, but we lived sort of away, like, about an hour away. So that wasn’t always possible. Uh, this is when. We took on the nanny because we needed someone in the house all the time, um, but after that and in the last sort of four or five years where I have been by myself, I have my coaching community, I have my clients, I think the biggest thing though is I know who I am, I know what my values are, I know what I need and I know how to ask for it.

That’s not always been the case. But when we get, when we do that deep inner work and we learn what we need, we learn what we need, we know what we need to align with values wise, then we can ask for what we need from the people that are going to be able to give that to us. Yeah. And I think that’s really important because I’m not going to say I always got that right because that wouldn’t be true.

I did have a patch there where I was not being me and I hated how I felt. Which, we can always go back and really focus in on how we’re feeling at the time, or if we’re around somebody and it doesn’t feel right, we know. Um, but yeah, I, I think that it’s surrounding yourself with people who have the same values as you, you obviously need to know yours, but the same values you want to be going in the same, have the same vision and and genuinely want care and want to help, help you.

That would be my answer to that, I think.

I like that. I like that. All right. So a final question for you before we get into to a little, little piece. I want to talk, talk about what you’re doing now, but I did want to ask. So for our parents who are maybe getting near the end of that caregiving time, and the kids aren’t needing them as much because they’ve done a good job, they’ve, they’ve gotten them ready for, for being these young adults that they’re becoming, um, any advice for Those that are having a hard time with that transition and not being needed as much anymore.

Oh, this is a big one. It’s hard. It’s really hard. My eldest has just moved out this weekend, depending on when you’re listening to this, but from the recording. And so I’m going through this in a big way because he’s been my rock for the last four or five years before, obviously he’s my partner now. But, uh, it’s hard.

I think, you know what, let yourself feel the things you’re feeling, but like, let’s not try and. Hide them or escape from them in unhealthy ways like it’s okay to feel that way And I think the best thing that you can do is just to turn inward and Really start to to get to know yourself ask yourself things like well, what?

What am I going to do now? Like, what, what do I want to do? What do I like to do? You know, uh, you can ask yourself all sorts of questions, but if you’re having trouble answering those questions or even finding the right questions to ask, then that’s when you, I would suggest reaching out to somebody who can help you go on that introspective journey and, and try and navigate that transition.

Healthily. Right? So, we want to make sure we come through that. We don’t want to do things that are going to create wedge between you and your children either because we want them to grow up and be successful and, you know, self sufficient was always my goal.

It’s our job as parents to get them ready for this stage.

So we need to not get in the way of that. And it’s, it’s not easy because we want to hang onto them and protect them and you know, um, and keep nurturing them, but we need to let them go. And we need, and I think the best way to do that is to focus on yourself. Yeah.

Nice. I know we need to wrap this up soon.

Um, if, if our listeners want to get in touch with you, what’s the best way to get in touch with you?

Yeah. So, I mean, I would love to speak to anybody who’s resonated with what I’ve been saying, um, and mainly around, like I said, around getting to know yourself, uh, because it’s not. You need that reflection sometimes.

You need someone else to look in and see what you’re not seeing. So the best way to get in touch with me is just to reach out to me on either my website or Instagram is my favorite place to hang out. If you’re, if you like Instagram, you can DM me there. But I’m sure we can put some some links in the bottom there for us to connect and yeah, I would be happy to jump on a call and see how I can help.

And that’s something that I offer. Complimentary just as a starting point just to make sure that I’m the right person to help you with that because there’s a lot of people out there that do the type of work that I do. And I think that you really can’t tell until you talk to somebody and you feel their vibe and you know that.

You know, you actually, you know what, this person gets me and they’ve been where I’ve been and I want to be where they are. So let’s take that journey, you know.

All right, so I’m going to put the links in the show notes, but tell us what is the website name?

Oh yeah, that’s a good point. Um, well, funnily enough, and it won’t be come as no surprise that my website is called freed2bu with a D.

Uh, and the D is important, uh, Tonya, because I could have it as free to be you, but. Freed, the D is like, it represents being on the other side of this journey, right? Like the journey’s never ended, but we’re, we’re in the second half, right? So we’re freed from that part and now we get to be us. So it’s freed with a D.

And that’s dot, dot com? Dot com. Okay. And your Instagram handle, what is that?

Freed to be You. Everywhere. If you go and search freed with a D to be you on any platform, you’ll find me. I’ve claimed them all.

So for those that want to find her, if you didn’t get it from that, check the show notes, it will be there with an active link for you as well.

So we get you there. But speaking of Freed to be You, tell us about the podcast. Tell us about what else you’re doing. Any projects coming up or anything like that?

Well, the podcast is, you can see, I like to talk. I don’t have an issue with that, um, at all. I wanted to, to be able to share my story in a way that would inspire other people to take themselves on.

So the, it has one purpose and is literally to give you permission to take that journey and take that step and free yourself up. And I talk a lot about self abandonment, which is not always bad, but you can hear that inside of my story, there was a lot of that. And we don’t really have a choice sometimes as mums, but other than to abandon the self in order to survive and look after our children.

Uh, so I talk a lot about that, but I really talk a lot about coming out of that into being fully self expressed. And so I, I think that until we feel free to do that, um, we’re always going to be self abandoning in some way. So that’s what my podcast is about. I share a lot about. Um, people’s stories who have been through this journey, um, people who work in a similar space to me, but it was a lot about parenting as well and relationships because that has been a big part of my journey and project wise.

Well. At this point in time, I’m still just offering my coaching. So I, um, I work one on one with people inside of a program called Ultimate Contribution Uncovered, and it’s a one to one program over eight weeks. It’s a deep dive into who you are. But it’s also extremely practical on the other side, where we set you up with a vision and a mission and goals inside of a framework so that you can go and align your life with those discoveries.

So it’s not just about this. Bluffy journey where we kind of figure out who you are. We obviously then need to learn how to be that. And so there’s a big part of that, um, process is actually learning how to step into it. Yeah. Uh, so again, the first step to do that would be to get in touch with me and make sure that that’s the right thing for you.

And I can share a little bit more about how that looks.

Excellent. Excellent. Well, this is, this is exciting. I, I like what you’re doing. It’s why we, we first met because I, um, I felt like we, we, we connected with our son’s stories with each other, which, which was a fun, a fun connection there. And our boys are a year apart, so they’re both.

My son’s turning 21. You’re just turning 20. So they’re, they’re right there, the same stage of life. Um, and it’s, it’s, it was, it was kind of fun to see the parallels between our journeys with them. It would be interesting if, if the boys ever, ever met each other, what their reaction would be to each other.

Yeah, that’s so true.

So we have a DJ and an athlete, so we’ll see. Maybe, maybe, maybe you never know.

You never know.

Well, Meg, thank you for taking the time to talk with us today and to, um, to share your story with us and also just some of the challenges of, of how our listeners can, can apply what they’ve heard from you.

So I, I really appreciate it. So thank you.

Thank you for having me. It’s the first time I’ve really shared this, uh, this part of my journey in this much depth, so it’s been an honor and, uh, thank you for giving me the space.

Well I, I appreciate your children being willing to let you share a little bit about them too, because I know it does, it does ask a lot to share their, their, their story as part of your story.

So, so thank you.

The post Episode #78: Parenting Challenges: A Mother’s Story of Finding Her Value appeared first on Water Prairie.

Show Notes:

Find the full directory at waterprairie.com/listen.

Join us in this enlightening episode as we delve into the world of emotional intelligence with our guest, Melissa. She introduces us to a fascinating game that not only brings joy and laughter but also enhances our emotional awareness. Learn how Melissa’s innovative game helps individuals of all ages expand their emotional vocabulary, connect with others, and improve communication skills.

Discover how Melissa’s game fosters vulnerability in a safe space, allowing players to share and express their emotions effectively. Whether you’re a parent looking for engaging activities to connect with your kids or an educator seeking valuable resources for your classroom, this episode offers a treasure trove of insights.

Tune in to explore the transformative power of emotional intelligence and find out where you can access Melissa’s game and upcoming resources. Plus, don’t miss the bonus emotional tools she’s giving away for free. Join us on this journey toward emotional intelligence and strengthen your connections with those around you.

📣 Connect with Melissa:

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Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Melissa Price is passionate about empowering parents to teach their children emotional intelligence.  She loves connecting parents to their children through play, as well as supporting parents in increasing their own emotional intelligence. 

She has 20+ years experience teaching youth creative problem-solving, acting, art, goal setting, and more.  Melissa is a Create Your Story Guide, a LifeStory and LifeStudio coach amongst many other methods of transformation.

As a coach and teacher, she is committed to empowering individuals to create their best lives by cultivating emotional intelligence and self-awareness. 

Melissa is the owner of Creative Family Connection and the creator of the Emotion Commotion™ card game. She has helped countless individuals, from children to adults, develop greater self-awareness, empathy, and emotional regulation. Her Emotion Commotion game has been used in schools, counseling centers, in prison, and corporate retreats, and has received widespread praise for its effectiveness in helping individuals build emotional resilience.

The greatest joys in Melissa’s life are-

Full Transcript of Interview:

The post Episode #77: Unlocking the Secrets of Emotional Intelligence Through Play! appeared first on Water Prairie.

Show Notes:

Find the full directory at waterprairie.com/listen.

In this insightful episode, join us as we delve into the complexities of special needs sibling relationships and the challenges of growing up with disabilities. Our guest, Melissa Ortiz, opens up about her personal experiences as a person with a disability and the dynamics she faced with her sister. From childhood memories to adult understanding, Melissa shares candidly about the trials and triumphs that shaped their relationship. She provides valuable advice for parents striving to strike a balance between their non-disabled and disabled children, emphasizing the importance of communication, age-appropriate explanations, and fostering mutual respect. Melissa also discusses her passion for advocacy and her efforts at ABLE Americans, a resource hub aimed at connecting families and providing vital information. Join us for an enlightening conversation that sheds light on the power of support, understanding, and unity within families facing the challenges of disability.

Melissa has been a guest on earlier episodes. To hear her story of growing up with Spina Bifida, check out Episode 72. To learn more about her work with ABLE Americans, be sure to listen to Episode 74.

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Connect with Melissa:

Connect with Us: https://linktr.ee/waterprairie

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Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Melissa Ortiz serves the National Center for Public Policy Research as the organization’s Senior Advisor for the Able Americans Project.

In her role, she develops the project’s strategic plan, marshals key resources and helps oversee the implementation of the project. She also assists the National Center’s president in identifying necessary contractors, employees, strategic partners, stakeholders and donors and serves as a key spokesperson.

Melissa identifies as a “happy warrior” and is enthusiastic about driving a dialogue between people living with disabilities or chronic illness and policy makers across the political spectrum, especially conservatives. She has worked in the classroom in Nashville, Tennessee and in the nonprofit sector in New York City and Washington, DC. She was honored to serve as President Trump’s Commissioner of the Administration on Disabilities. The first female board member of The Conservative Caucus, one of the oldest conservative groups in existence, she currently resides in Washington, D.C. with her husband Tony and Service Dog Dachshund, Annie Oakley.

Full Transcript of Interview:

Tonya: So Melissa, welcome back to Water Prairie.

Melissa: Thanks. It’s good to be back.

I always enjoy talking to you. Yeah. As, as you know, if you’ve been following the podcast this season, we’ve been asking each of our guests to bring in some facts or pseudo facts about themselves to have you as a listener guess which are true and which are false.

And so Melissa has been a really good, um, um, companion with this because she’s been willing to bring in different ones for every episode that she’s in. So. We’ve tested her with her truths and her lies along the way. But today she has another set for us to try to guess with. So, Melissa, what are your facts for today?

I was once Miss Teen USA, the very first person to ever compete on crutches. And I love completing crossword puzzles in ink. And I’m an avid reader.

All right, so the crossword puzzles in ink. Even my dad wouldn’t do that. My dad was an avid crossword puzzler. So I am really impressed if that ends up being a truth. But we’ll see. Listeners, go and guess. Put it in the comments if you’re on the YouTube channel. And if you’re not, then check out Instagram and Twitter. Find the post and post your guesses there. And we’ll see which of you are able to guess the correct one.

So Melissa, today we’re talking about disability issues. It’s something that the podcast is about anyway. But specifically, I wanted to find out your experiences growing up in a family and some advice that you may have for parents who have more than one child.

I have one sister and she is almost 10 years older than I. My mother was married and had my sister and that marriage ended in divorce because of domestic violence. Then, my mother came home to live with her parents. And try to figure out how to put her life back together. And literally physically ran into her high school sweetheart. In the hardware store, 3 or 4 days after coming home. And… Less than a year later, they got married. And, then, you know, that is, they tried for five years to have a baby.

And, I, um, I didn’t show up until they had been married almost, um, Well, no, they had been married for five, they’d been married not quite five years when I showed up. And then, um, my dad died when I was five. So, here’s my sister who, um, for her Almost 10 years has been the princess on the satin pillow, the only child, very athletic. She was a horsewoman, still is a horsewoman. She was the youngest person ever invited to join the Atlanta ballet as a professional dancer. She had to choose between that horses because they do different things to your muscles and she chose the horses right when she was having to make that decision about did she wanted to pursue ballet full time or she want to ride horses and she said she wanted to ride horses.

She, my sister is also Um, we joke about her being the brightest bulb on the Christmas tree because she is brilliant in math and science, especially, and I, um, I can’t imagine what it must have been like for her to, you know, go through this situation with her, her dad. Then my mom marries her high school sweetheart who adored my sister and treated her as his own.

And then mom gets pregnant. doesn’t know immediately she’s pregnant, she’s sick for the entire pregnancy, and has to go to bed for a big chunk of the pregnancy, and then I was born two months early through a caesarean section, that they didn’t know if either one of us were going to live through. We both did, um, spoiler alert.

I think that I would be pretty resentful of the little upstart they brought home to. Because I was underweight, um, they weren’t prepared for me to be born, and my dad’s not a shopper, so my first bassinet was a turkey box. And, you know, my sister, and, and all of a sudden, the whole world revolved around, well, does Melissa’s diaper need to be changed?

Does Melissa need to be rolled over? Does Melissa need to be fed? Oh wait, mom can’t pick Melissa up because mom can’t lift anything heavier than a fork for six weeks after the birth. And so you have all these things.

I, I, I didn’t really understand until I got older and I began to look at other families who had a child with a disability because I was the child with a disability and I couldn’t wrap my head around it from her perspective. And then when I began to see her perspective, I thought, Oh my gosh, I think I would have put me on the back of my, of the bike and driven off somewhere and just left me somewhere to fend for myself.

Um, I was a brat. I just, not that I was undisciplined, but I was needy and I was pretty whiny about those needs. And there’s some who would say that a whole lot hasn’t changed, but they don’t know. They don’t know. And my sister is also very independent, just like I am.

My sister is much more reserved and much more analytical about, um, participating in anything before she jumps in, whereas I, um, tend to leap and then look very quickly behind me to see if the parachute has come out of the bag. And my sister didn’t understand things that I went through, um, until she, gosh, I don’t remember how long ago this was, about 25 years ago, she broke her femur and, in a, in a horse riding accident and, um, broke some ribs and that sort of thing.

And she called me three days after the accident and she said, I’m so sorry. I had no idea. I didn’t know that this is what you went through. And my immediate question was, and how much morphine do they have you on? Because that was so unlike her. Then, um, as in the last year since my mother has lived with her, um, we’ve become better friends, and I actually feel like for the first time in my life, I truly have a sister, and so that’s been a good thing, but it’s very difficult for both the child or children with disabilities and the non disabled children, and one of the biggest things that I would suggest, um, not to create a divide within the family, and my Kindle turned and went to sleep mode on me here, so let me pull it back up, not to create a divide within the family, but I think that Because it is so, anytime you have somebody, whether it’s a parent or a child with a disability, the family dynamic revolves around the neediest child.

I think, I don’t, I don’t remember who said it, but there’s a piece of parenting advice out there for mothers that says, or parenting, a parenting adage that says, you’re only as happy as your happiest child. I don’t know who said that, I think it was Irma Bombeck, and there’s truth to that. But, you know, whoever your neediest child is, is what the family dynamic revolves around.

Uh, for my husband, it was his sister because she was the oldest and she was the oldest cousin and she was the prima donna. And, and so unfortunately he likes to be alone a lot. So he said, I was very satisfied with not being in the spotlight, but it would have been nice if my ideas had been listened to every once in a while.

So I would say this to parents, schedule some activities to, to, to, Accommodate and be just for the kids who are able bodied if they want to go ziplining take them ziplining The way that other families in your social circle and your church can help is Offer a day of respite to the parents and say let me take your child with a disability over my house We’ve got a pool.

We’ll get in on the float We’ll do or we’ll do something that this child likes so that y’all can go and And be a, and I’m going to use the air quotes, normal family and do something that the rest of you want to do. And I just think I’ve seen that work so well in so many situations and it creates, it’s like a pressure valve release for everybody of, oh, our life isn’t forever going to revolve around this.

And, oh, we can still do things as a family that don’t include having to make accommodations for Harry or Sally, for lack of choosing two better names.

So with family dynamics, Um, whenever one child has a disability and their sibling doesn’t, how do you think that impacts a family?

Everything revolves around that child with a disability.

In the same way that if you have a child who’s a standout athlete and the other child is not, everything revolves around that child who’s the standout athlete. The And I, and I’ve always wanted to, there’s a mom in the NFL who has three sons who are all in the NFL. I think Gronk is one of the nicknames, it’s a shortened name of Gronski or something like that.

I’ve got to look that up. But people have asked her, how was it, what was it like having three standout football sons? She said, it was great because I only had to be in one place until they all went to different NFL teams. And then it was really upsetting because I was juggling, but it’s the same thing.

Um, with, when you have a child with a disability, you have to make time for the non disabled child and things that that, that, that child wants to do that don’t include the disabled child. And the non disabled child also has to make time for that sibling who has a disability of, okay, so these are the things that we’re going to do because to do otherwise creates resentment.

I saw it in my own home. I, I’ve seen it in countless other homes. Um, and. I had a, an experience that I will treasure for the rest of my life. When I was, my very first work trip when I was the Commissioner of the Administration on Disabilities, um, in 2017 was to a big conference and there was a sibling, a special breakout session for adult siblings of people with disabilities.

And I went because I wanted to hear what they had to say. And I told them, I said, I’m here. But I want you to feel free to let this be what you need it to be. I’m just here. And, and just to hear what they had to say and some of the pain and some of the the feeling invisible and some of the, you know, the different things that they all felt and they all were in agreement with each other and it wasn’t a, um, it wasn’t a gripe session.

It was, this is where I struggle and then you would say me too you would see me too around the circle go up and then I began to just sob as I sat in the corner of the room and I said we’ve done you a disservice because it’s been all about making sure you’re not your disabled sibling was included in things and you needed your own stuff and I said Is there anything, I said, let’s pretend that I am your disabled sibling.

Is there anything that you need to say to me to get it off your chest, so that you don’t take it out on your disabled sibling? And it came at me. And I heard, recently even, from one of the people that participated in that group, she said, I had to track you down on social media. And she said, I just wanted to say, thank you.

Because my second parent had died the week before I came to the conference and I was now solely responsible for a very low functioning sister with, um, with a developmental disability. And she said, I, I was angry and I just needed to tell somebody that. And the fact that you sat there and let me say that to you as if you were my sister cleaned my heart in a way that I was able to go back and love her in a way that I don’t think I would’ve been able to. So there’s gotta be a safe place for the letting off of pressure.

Yeah. I know with my kids, um, they had different types of disabilities. So my daughter was, was visual impaired from almost day one. It was, it was obvious there was something that she needed help with.

So we had the early intervention, we had all the extra help there. And then Christopher came along a couple years later and, um, and for all points and purposes seemed to be developing, typically. Some, some speech delays, but, but those were being addressed along the way. And, um, and so he took the back seat a lot of times whenever she was going through stressful situations.

But as he got older and it became more obvious that he had learning disabilities, that he had things that were invisible, and he was still taking that back seat, we started working on trying to make sure that we got him where he needed to be. To have that time and so we weren’t the parents who had them go together to everything They they had a lot of similar interest when they were young which helped me as a parent Because they both could go to karate together.

They both could do swim together. There were things like that And even with Emily being involved with the miracle league, they let Christopher come in early and be a buddy for her So they did that still together But we didn’t make him go to her dance things We didn’t make her go to his baseball thing, so they kind of had their space and we realized pretty early on that that was a healthy thing to do so that they could have that time with us, but it does take some coordination as a parent, especially if the income isn’t there to be able to pay for a babysitter or some type of activity for the other child to be a great way to offer them. support and help for that family. Um, or single parents who have more than one child. Can you, can you partner with them and maybe help that, that sibling? Or, or help the child who has extra needs? Take them for a while and let the parent go, you know, whichever way on that.

Um, so yeah, so I think for all different reasons, as parents we feel That juggling situation happens all the time. I want to go back though and ask you a little bit. Um, with your sister, so you said there’s a 10 year age difference between you. Um, and your sister more than you even went through some younger traumas between the, you know, losing, losing biological dad being part of her life.

But then also going through adjusting to a new dad. And then. Ultimately losing him as well, um, at, at some crucial ages for a young girl. So, so she had, aside from having a sibling that she may or may not have enjoyed that much. I’m just thinking she, she, she had a rough childhood.

She did.

Coming through those years.

She did.

Um, really impressed to have heard that she was equally skilled in ballet and in horseback riding. That’s pretty impressive.

She’s still pretty impressive. She, she’s. She is, um, let’s see, I’m 57, which means that she’ll be, oh wow, 67 in October. And, and so this, so, and she has a horse farm and she cleans out stalls every day.

She, um, gets on angry horses every day and, and she stands in the hot sun every day teaching kids. But she, she’s the strongest person I know. Because she has had trauma. And, you know, whereas I’ve had trauma for other reasons. She’s had trauma that. I am in awe of the things that she has been able to do with her life.

Right. So when you were, so when you were a baby, I know, I know you had, because you shared in the last episode about, um, some of the medical things that you had and, and some of those are crucial times during your life as well.

Um, but did you have the typical sibling I mean, are there times when you can look back when you were children in the home together? Because that wouldn’t have been for that many years, because she would have been leaving. Especially getting married at 17. You didn’t have many years where you would have really remembered it, but did you have family time together that, that you’re able to look back and remember? You know, some, some, some pleasant things that, that interchange between you with, with, with, with the ten year gap.

Oh, yeah. I mean, it was different. Um, and I know that she was forced into babysitting a lot. And that that was yet another, another…

And that’s something I would say to parents, don’t force your kids to babysit their disabled sibling unless they’re completely comfortable with it. Period. Full stop.

This is a sibling thing that’s hilarious. We had this low retaining wall at the end of our driveway from where they closed in the garage to make a den, and, um, she used to sit me on the wall like a little statue and then she would practice jumping over me. And that’s such a thing that siblings would do to each other. And I loved that she did that because it let me know that she saw me as a person and not just some little crippled girl. Before everybody jumps all over me for using the “C” word, that’s what we called it back then. I remember that and then different memories through the years of her being very protective of me. Um, she, I will never forget being at a shopping center and they sold me the wrong kind of film for the camera that I had. And she looked at me and she said, did you show them the camera?

And I said, yes. And she, I think I was maybe 15 at this point. And she slammed the door. She jumped out and slammed the door of the car and goes striding back into the camera shop with the film in one hand and the camera in the other. And I see her yelling at the guy behind the counter. And, um, there was like some sort of difference in the amount that the film cost.

And she was like, I’m not paying it, just give me the film. And so, and, and you see, and I see this woman behind her go, And handing her the difference in the money and um, You know, so I know that while there was deep resentment there, and, and, and, and, you know, and, not hatred. I don’t think it’s really that.

Maybe it was. I don’t know. We have not gotten that far since we’ve gotten to know each other as adults. We’ve never gone down that road. And, she said recently to me, she said, you know, I realize now that you have a strong survival instinct. And so much of what used to irritate me about you was simply you trying to navigate your way through life.

And that I felt like somebody had given me a sack of gold coins when she said that, because I felt seen and I needed to, I needed to feel like she understood what I, what I was trying to accomplish. And I cannot imagine. Going through some of the things that she went through and living through them. So I have enormous respect for what she has accomplished. So.

Right. So as adults, you have a good relationship now. And this is exciting to hear, too.

Just within the last year. I mean, we’re old and it’s time.

I know my kids, I mean, they’re both in college now. They’re starting their adult lives. They have different memories of different time periods. And I think that part, I don’t know that we can fix as parents. We can try and give them as much balance as we can, but what they internally view a situation as, that part, I don’t know that we can control that, because that’s going to be based on their interpretation, their emotion at the moment.

What, you know, because, because they don’t even understand always why we do certain things, depending on the age.

No, and, and, and, and that’s, whatever it is, it’s going to stick.

Right, but I will say that my kids are diehard loyal supporters of each other. And, um, and, and that came over time because Christopher was born into the situation of being a sibling of someone that needed help.

Emily became that protector of him as it became more obvious that he needed some support and he needed kind of a cushion around him every now and then, especially when he was young and having even teachers abusing him, just, just emotionally. Um, with, with, with, with ridiculing.

Um, but they were a good support for each other and they have a closeness now as young adults because they, they walked through that together, but they were also much closer in age than you and your sister were. So that, and, and I never knew being boy and girl, if they would have that connection or not.

My prayer has always been that as adults, they’ll be friends. I feel that that. That is going to be the case because I see them now at an age where they should be totally opposites of each other, and their friends are very different, their personalities are very different, but they do, um, Migrate to each other to help each other if there’s anything they they text each other first if there’s a question or if they need support before they even text us sometimes.

Oh, that’s great Um, that’s the way that my husband and his sister are they are only five years apart and They are closer in age much closer in age very different home situation much more tranquil much more. Um, settled both parents Lived through their growing up years One of the things that was hard for me and my sister too is that my mother got into, there’s a, it’s, they call them the fundamentalists and it’s the Institute and Basic Life Principles, IBLP, or the ITA, Individual Training Academy, Institute Training Academy, something like that, that’s our ATI, ITA, something like that, um, that’s a homeschool thing and it’s very legalistic and My mother held up my sister.

My sister was pretty rebellious because I think of all the trauma and she was always held up to me as an example of who I didn’t want to be. And so it wasn’t until I left home and started college that I began to unpack all of those things and realize that mom, unintentionally put a major wedge in our relationship and our view of each other because my sister said I always thought you were the golden child and I said well that’s funny because My mother’s parents always portrayed you to me as the golden child because you came right home and did your chores and did your homework before you played and you were just little Miss Industrious.

And I came home and took a nap and watched TV for an hour before I started doing my homework because I just simply needed to rest. And that wasn’t understood.

So, um, so for family, so we’ve, we’ve talked a little bit about, about the childhood part and how you very connected with your, your sister now. But through that, and through families that, that you’ve interacted with as well, beyond, beyond your own family, um, what advice would you give to families that are struggling to try to keep that healthy balance between their non disabled and their disabled children?

Make sure that everybody has consequences for bad behavior. If they can’t be the same consequences for everybody, and sometimes children with a disability can’t have the same behaviors that your non disabled child has, you cannot expect… child who has autism not to vocalize and not to not to respond in the ways that their body responds to things but you can expect them to be you know to have manners and to behave and thing and I just think that there always need to be constant that the behavioral expectations need to be attainable and that they need to be clear And that there has to be some way of getting the child to communicate, all the children, disabled or not, to communicate back that they understand what is and is not appropriate.

Um, one of the most, and, or, you know, and, and to know what the child’s limitations are. And to, and to, While not judging the non disabled child by the same standard, just making sure that it’s, there’s an understanding of what is expected and that the playing field is level on expectations and consequences for not, for not behaving.

So… There has, there have to be limits. There have to be consequences. Nobody gets a free pass because they have a disability. That’s the worst thing that can happen.

I know for my kids, um, my daughter had an extreme fear of closed doors. So putting her in her room was a, would be a traumatic discipline for her. So separating her around the corner where she could still hear us was what she needed. So. There were different things. My son… You could isolate him all you wanted to.

His toes were going to become toys. There was just not really a lot that you could do. He would even ask you what the value of a punishment was before he’d decide whether he was going to break the rules or not. It was just…

I like this kid. I can’t wait to meet him. He is my kind of kid.

So the, um, but we knew, um, like the, we didn’t always put the children in timeout.

Sometimes we put the offending item in timeout. So the top of our fridge, a lot of toys were in timeout on top of our fridge for a long time. To the point where sometimes we’d find something up there and we couldn’t even remember how long ago it was put up there. Because we’d forgotten we even had it.

Exactly. And I, that’s a great way to do things. I think that a good parent when they’re at a loss will seek out other parents in similar situations. Yes. And this is another reason why I feel like what I’m doing at ABLE Americans is so critical to develop a resource bank so that there can even be an online message board or support group.

If you’re not in the same town, if you can at least get on Zoom and talk to each other and at least communicate that way, there’s a great value in shared experience and in the resource of, like, In talking to Johnny about how to handle the um, how to handle the radiation table, I, I don’t know what I would have done without her advice because I knew what needed to be done but I didn’t know how to ask for it and I was so beaten down and so exhausted from being so sick that I had forgotten how to advocate for myself in a way that was appropriate because there is appropriate advocacy and then there is. I want my way, dadgummit, and I’m going to just pretend that it’s about my disability when it has nothing to do with that. I just want my way.

When there are benefits, um, you know, even through the podcast, we’ve featured, um, groups like the ARC, um, the Miracle League programs, um, whether it’s a recreational group or a support group that you’re going to find, you’re going to find other parents that are in the similar path that you are at those locations.

And that’s where, as Melissa is saying, you’re going to find, um, those peers that you need that understand beyond parenting to children, beyond parenting, you know, typically developing sibling rivalries and everything else that happens. You’re also looking at how, how do you distinguish and helping to encourage positive growth in all of your children with this.

And so other parents in those groups are going to have the same questions, but some of them will be ahead of you and may have some solutions that they found that, that are working.

The thing that you have to remember about children with disabilities is that they are not their diagnosis.

They are first your beloved child. And as long as that is kept in mind, everything’s going to be okay. It may take a while to get there, but everything is going to be okay. If you keep in mind, you know, how, what would you want done for your non disabled child? Well, then do that for your disabled child.

How do you think parents can help their typically developing child understand and accept what their child with a disability has going on? Like, to maybe help foster that relationship between the children.

Hmm. Well, again, uh, and you have to know about me that I love the show Big Bang Theory. Okay. Uh, it’s, it’s, um, because I, uh, there’s this character, Sheldon, and he is level one. And he, each of the principle six characters in the show five of the six have something that makes them an oddball and the sixth one is a beautiful blue eyed blonde actress and wannabe and then she works at the Cheesecake Factory and one day Um, Sheldon’s roommate was talking about, why does he act this way?

Why is he this way? And, you know, and, and she rips around and she looks at him and she said, because the brain of his, the part of his brain that tells him how to act has a wedgie in it. And just, you know, and then it was funny, but it was a great explanation. And and I think that if parents can just be very, they don’t have to be overly technical.

They don’t have to be overly medical. They don’t even have to give too much information. Just give enough information to answer the child’s question. I equate it a lot like sex ed. Age appropriate. Um, what, what do they really need to know to understand the situation? Um, it may be Melissa’s legs don’t work like your legs.

I think that it depends on the child. I think you need to be very realistic and not scare the, the typically developing child to death, but help them, you know, be frank, be absolutely frank and say, this is the reality of this situation.

I’m going to ask you not to share this information with your sister or brother, that you know this, don’t use it as leverage, but you need to understand this about your sister or brother. Um, and I had friends who were more like siblings, and I had one friend who was just determined that I was going to learn how to walk.

And she was a freshman in high school, the year I was a senior, and sent me down a flight of steps because it was just beyond her why I could not concentrate hard enough to do it. You know, and she wasn’t, she was brilliant. She um, got a degree in chemical engineering and worked at DuPont. But she loved me enough that she wanted me to have the same experience as she was having.

I think that every sibling needs to know that it’s not up to them to create those experiences. And that it’s not up to them to fix their sibling, explain their sibling, but it is up to them to be a good sibling to their sibling to the best that they’re able. How would you want to be treated if this were you?

Oh, well, I wouldn’t want anybody to pick on me. Then don’t let anybody pick on your brother or sister. Right. Um. Right. And it, you know, and I keep going back to, um, it was perfectly fine for my sister to sit me on the wall and pretend to jump over me, but the moment that somebody in the neighborhood took out after me, oh, no, no, no, no, no, no, no, no, no, no, that was not going to happen.

And because my sister’s oldest child is only eight years younger than I, it was more like having a little sister. Right. And she was the same way. She could be obnoxious and gets frustrated with me. But heaven help anybody that ever made fun of me or laughed at me or anything like that. Uh, because my niece was a basketball and volleyball player and she was a softball player.

She was very scrappy. And she’d just flat take you out. No questions asked. And, you know, you just didn’t miss, mess with Aunt Melissa. She didn’t call me Aunt Melissa. She’s called me Melissa because our ages were so close. But I think it has to be, it’s be age appropriate. Again, going back to the, um, the sex ed.

Be age appropriate. Don’t give them more information than they ask for. Explain it in the simplest terms. And then be willing to answer follow up questions. To be frank. To be, you know, not, Put the child off of, oh, we’ll talk about it later. Because there may be, and then ask, is there a reason that you wanted to know?

Because somebody may have made fun of the sibling at school or out in the neighborhood and The, in the typically developing sibling may not have known how to handle that or how to address it. They may have been asked, what’s wrong with your sister? What’s wrong with your brother? And they may not have known how to answer that, so that may be why they’re asking.

I think it’s always important to get some context on why that information is needed. But to never not give it. To give it in the most, um, in the most generic and simplest, easiest understood terms. That’s what I was trying to say. Easiest understood terms.

Good answer. I like that. Alright, so Melissa, if anyone wants to get in touch with you, um, what’s the best way to get in touch with you?

I’m very easy to find. I am, um, Melissa Durham Ortiz on Facebook. My email is [email protected] and my personal email and my work email are very similar, so I had to think about it for a second, and then my Twitter and Instagram handles are @dcbelleonwheels. And that’s how you find me. I answer inquiries, um, I’m happy to talk to people by messenger, I’m happy to receive emails.

Um, in fact, that is the preferred way to get in touch with me, is by messenger or

email. All right. Excellent. Um, and do you have any special projects you want to talk, talk about? Um. Well, the, um, the resource, do you want, um, information?

We are. Yes, um, if you have special resources that you know about in your area, please tell me about them through an email because we are building an app.

One day we hope to have more than just a webpage with all the resources, but we hope to have an app so that all you have to do is put the diagnosis, the need, and your zip code in and everything within 100 miles will pop up. I’m also pulling together a presentation for four governors.

They shall not be named at this time that I’m going to go and talk to you about Medicaid portability. If you, if you are on Medicaid, you understand this all too well, but many Policymakers and lawmakers do not understand that Medicaid is not portable between states. And that creates a lack of opportunity for many, many people who have chronic illness, medical fragility, either themselves personally or they have somebody in their family that’s dependent on Medicaid to help cover the expenses of their disability.

So I am putting together a pilot program that I’m hoping these four particular governors will endorse and it will become eventually… Practice of the land.

Melissa, thank you for, um, for spending some more time with me today, and I look forward to the next time we have you back again, but, but thank you for sharing just your personal experiences with having a sibling and just even the good and the bad that you’ve gone through. And um, it was exciting to the future together as, as friends and sisters now, but thank you.

Thank you.

The post Episode #76: Special Needs Sibling Relationships and Disability Awareness appeared first on Water Prairie.

Show Notes:

Find the full directory at waterprairie.com/listen.

🎙️ In this captivating episode, join us as we delve into an extraordinary story of resilience, survival, and the unbreakable human spirit. Fred Rutman, the guest of today’s show, takes us on a remarkable journey through his experiences of childhood stroke, multiple health battles, and his unwavering determination to overcome them all.

🎧 Tune in as we explore Fred’s incredible journey of triumph and discover the resilience that lies within all of us. Don’t forget to subscribe, share, and leave a review if you found this episode as inspiring as we did.

*******************

Connect with Fred:

Purchase Fred’s book: The Summer I Died Twenty Times: Because Lightning Does Strike the Same Spot Twice

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Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Fred was a business prof teaching Finance and Marketing until the summer of 2009 came crashing down on him, with a continuous stream of medical traumas, including his being clinically dead 20 times (There would be more to come). This left him with PTSD, Post-concussion syndrome, and ongoing anxiety. This would have crushed most people. But Fred had another issue. All of this was layered onto his pre-existing medical issues. You see, Fred had a stroke at birth. And it went undiscovered until his mid-30s. That’s not to say he didn’t have an ABI and its accompanying issues. It’s just he didn’t know how to describe his world, and if he could figure that out, who would he tell? The result was being forced onto permanent medical leave.

Fred has since been hospitalized 22 times, undergoing 12 heart procedures. The short story is that his heart was stopping. Each time it stopped, he collapsed, and hit his head, sustaining multiple concussions. They finally figured out he needed a pacemaker. Which was great, until the pacemaker failed in 2013, requiring two emergency surgeries. And it failed again in 2018, with more surgery required. There were additional complications in 2019 and 2020.

In 2018, Fred learned about intermittent fasting. His life hasn’t been the same since. He attributes the large majority of his recovery to the healing powers of IF. Fred spends much of his day talking to people about resiliency, overcoming adversity and living their best, healthy lives.

In summary, Fred shouldn’t even be alive. Nor should he be any level of functional. And yet, here he is trying to be a positive source for anyone who is going through their own trials and tribulations. It’s a power message from an incredibly resilient formerly dead person.

Full Transcript of Interview:

Tonya: Today’s guest is Fred Ruttman, a. k. a. Repeatedly Dead Fred. Fred was a business professor who taught finance and marketing until one summer when his life changed dramatically, including being clinically dead 20 times. But Fred’s amazing story began years before that traumatic summer. And today we’re going to be hearing about how he had a stroke at birth that went undiscovered for years.

And this is a story that you’re not going to want to miss. Fred, welcome to Water Prairie.

Fred: Thank you, Tonya. Happy to be here.

So, I’ve told Fred this ahead of time, but if you’re, if you’re new to listening to the podcast, we’ve been playing a game with our guests this season. And I’m asking each of my guests to provide three facts or pseudo facts about themselves.

And you as a listener, your job is to try to guess which one is true. Which two are true actually, and which one is the lie? And you can post your guess. If you’re watching YouTube, you can post it in the comment section. If you’re not, you can go to Instagram or to Twitter, find the post about this episode and write your guess on there.

And a week after we release that, we’ll post the answer. So, you can always come back and check what your answer is. So, Fred, are you ready to share your facts with us?

You betcha.

All right. What do you have?

Okay. Okay, um, well, I’m Canadian, so it’s the law that I played hockey. I played competitive hockey, college rugby, and I used to be able to bench press 350 pounds.

Number two, I’m Jewish, and I’m a priest.

And number three… I’ve written a book.

All right. All right. Listeners don’t go right now. Finish listening to this episode, but then make sure that you remember to go back and guess afterwards.

So, um, so Fred, your introduction for me was, was interesting enough just with your nickname and everything else.

But I want to get into that in a little, in a little bit, um, starting out. So, you had a stroke when you were young. When was that first discovered?

Uh, in my mid-thirties.

And what was happening in your thirties that they, that they found out about the stroke?

My sister, uh, became friends with a woman whose husband was, um, had a private psyche psychology clinic where he specialized in brain trauma.

And, uh, my sister’s friends said, you know, uh, I think Fred might have a problem. And he should get tested and I got tested and the doctor told me, you have like a severe right hemisphere dysfunction. You know, the right side of your brain is, you know, pretty much obliterated and, uh, and that’s pretty hard to, you know, to wrap your head around.

And, uh, so that’s where it all started, but it started to explain a lot of the things that I found difficult in life and. You know, thankfully they offered some level of, of therapies and treatments that helped me immeasurably. But again, you know, it was the early nineties. So, it doesn’t come close to, you know, the types of therapies and, and, you know, treatments that are available today.

Did they say why it wasn’t recognized when you were a child?

Well, I think just because I’m, you know, 390 years old, uh, they weren’t looking for things like that, uh, as a kid, you know, it just wasn’t that time. It was the early 60s. Um, and, you know, I, I think infant strokes, I’m told are more common than people realize.

Um, but you know, kids are just so neuroplastic that, uh, as they grow their brain, you know, adapts and builds new pathways and things like that without them even knowing. But I think, uh, it’s a, it’s a difficult thing for, for parents. When my parents found out they were devastated, you know, because I had been put in the camp You know, if Fred would stop being such a smart ass and apply himself, you know, he’d do really well.

Um, and, uh, you know, my parents had no, no reason to question that and they had a lot of their own stuff going on. So, it just, uh, I guess I found out when I was supposed to find it.

So, so you said it was your sister who recommended that you go?

My sister’s friend.

Your sister’s friend. So, do you have more than one sibling or was it just the two of you?

Yes, I have a brother.

Okay I’m just trying to think you know How large the family was too because I think that makes it harder to pick up on some things sometimes Especially I’m I I’m like you I was born in the early 60s the and so, you know things were different than they are today and the types of infant checks that were happening weren’t the same as what they have today.

So, so when you’re 30, they’re talking about how your brain is. And I’m thinking, all right, so how, how would I react to that situation? I think I would be like you were, but also at some point it’s got to click to that. Well, I’m still the same person that I was before they told me this. So, it’s, it’s still there.

It’s just that you, you didn’t know that part was there. Um, but did you have like when, uh, other than being a smart aleck, did you have any like challenges in school? Were, were there any like looking back on it? So, nothing’s showing up with that.

Yeah, there was a ton of stuff, but it was all just lumped in the same bucket, you know, Fred’s just not applying himself.

So, you weren’t trying, you weren’t interested.

Yeah, so what I know now that was explained to me probably six or eight years ago with a neurologist Um, I have a condition called hemiparesis. So, the body is split in half vertically, and my left side of my body is slightly paralyzed. All the way up and down, because the right hemisphere is…

So, I’m legally blind in my left eye, but yet for my entire childhood… The doctors just thought I had a lazy eye, so they kept patching me and trying to bring it up, but it wasn’t the eye that was the problem, it was that the brain couldn’t process anything.

Right. So, so they were aware of…

Tons of stuff like that.

Yeah, so they were aware of things that were there, but just didn’t have a name for the cause of it.

They didn’t know it was an issue because, um, in my book, which we’ll talk about in a little bit. Um, I talk about cognitive bias, like the doctors, once they decide on something quite often, they’re not moving off their spot.

So, if they don’t have a reason to, to look for something else, they’re just going to say, you’ve got an unresponsive lazy eye. It’s not common, but it happens. Tough luck.

We’ve, we’ve had similar conversations with some of my other guests that have come on where, um, well, like even, even my own family’s case where you, you run into a doctor who may mean well, but they don’t necessarily look beyond what they think they’re seeing in front of them.

And so, um, so I do, I do hear this a lot. And, and the types of conversations that I’m having with people who have had disabilities or special needs, it, it takes someone to continue asking questions and to keep, to keep researching to, um, to try and find those answers. Um, and I, I think this is a valuable conversation because even today, I think.

It could happen the same as it did with you if it’s not something obvious that’s, that’s jumping out at a doctor. Um, and so not saying that parents, if you have a child with a lazy eye, that that’s not what it is. Maybe that is what it is. But, um, but it, but as we’re always saying on this, you know, you, you want to be asking questions.

You want to be making sure that you’re. that you’re doing some research and that you’re, you’re advocating for your child. Um, so Fred, with, with elementary and also you started school on time, you, you walked before that, you talked when you typically would have been talking and everything.

Oh, did I talk? Yeah.

I’m assuming you’re not the oldest child, or are you?

No, I’m not.

Okay. The, um, the, the oldest isn’t always, always the, the, the talker with an attitude. Is it? No, the oldest is normally the one who’s more nurturing. Of course, I’m, I’m thinking half of our audience is going to call in and say, no, I, I, I actually am, am the old, the older one with an attitude.

But so, I’m thinking that you probably have done a little bit of research now on understanding what. The stroke was, do you feel that you’re, um, equipped to be able to talk about today’s level of what would be happening if a child were to have a stroke?

I think so. I think, you know, parents are looking for markers so much more than they were when I was a kid.

And, you know, the doctors and nurses are also more aware in the birthing room of things that might not be going right or wrong. So, I think there’s a huge advantage. Uh, this will sound funny to having a stroke now versus having a stroke in the 1960s.

So, do you know what some of the signs or red flags might have been?

Um, like if, if a parent today is looking at their child, what it would look like if a child to, to know whether they had had a stroke or not?

Well, I think you, like most medical things, you have to look for trends and groupings. So, if it was only that my lazy, I was lazy. Would be one thing, but if you’re seeing that your kid can’t learn colors because I can’t, I can’t do colors.

So, when you see different things, adding up, that’s when you need to take a deeper dive. I think. Um, even when we were learning to write, I know kids don’t learn to write anymore, so that might not be such a great example, but my handwriting is atrocious. I could not read right between the lines and the teachers were just like screaming at me for, you know, wasting paper and not trying and.

All these other things, um, so I had a comparative test done by this doctor, um, and they do a finger click test. So, they know, you know, they’ve been doing these for dozens and dozens of years, so they know approximately what a normal dominant hand should be able to do. So, I’m currently right dominant hand.

My dominant hand was performing at what a non-dominant hand should perform at. So, there’s, I’m going to guesstimate the number because I don’t remember exactly, but it’s probably a good 30% less. So, say you were supposed to be able to click 100 times. I was only able to click 70. Then they went to my left hand. And, oh my gosh, it was like, even way lower than that. So, it was, uh, pretty obvious.

So, do you think you were probably a left-handed?

It’s possible. My, um, left handedness does run on my mom’s side of the family. And, uh, I can put on a baseball glove and catch with either hand.

Okay. But throwing the ball?

Um, well, throwing the ball, because I’ve got the paralysis, that’s never going to be good. So.

Right. The, uh, yeah. And wasn’t, wasn’t thinking about that, that side of it. Cause I, cause I, I can play golf, um, right handed if I’m driving, but if I’m putting, I put left handed and, um, and I just, I don’t know if it’s visual or if it’s coordination, I’m not sure which one it is, but it’s just always been natural to put left handed and, um, and I can, I can turn it.

The other way around, but I’m not as accurate. with it. It just feels, feels funny. But I hit a baseball right-handed. I’ve never tried it left-handed. I don’t know. Maybe, maybe it would feel more comfortable if I tried it left-handed. But, um, but. I,

I bat right-handed. I golf right-handed. I played hockey left-handed.

So, yeah. So there, um, there, I think, I think there are a lot of, a lot of things like that, that, you know, it’s, it, it can pass over right and left sides. Um, so I’m trying, trying to wrap my head around this. So, you’re right. hemispheres where the damage was done from the stroke, which affects the left side of your body correct?

Yes. For the most part.

Yeah. And, um, tell me more about the paralysis that you’re talking about. So are you able to use your, I mean, you’re, you’re using your left hand while we’re talking here. So, like what, what exactly, like how, how much does that affect you or did it affect you when you were younger even?

Oh, it affected me a lot. Um, you know, it affects your balance. Uh, you know, it affects my depth perception, it affects my visual memory, all, all sorts of things. Um, I, I had, uh, an auditory issue. I could hear the words, I could understand the words, but I couldn’t understand them in a sentence. Uh, I couldn’t track lines while I was reading so I’d reread the same sentence over and over and over again.

So how did you do in school then? Like, did you have tutors that were working with you? What did you do to get through school?

No, I had, you know, my moments of, uh, Stephen Hawking brilliance. And then other days I was just me. So, you know, it turns out I am pretty smart.

Um, I just didn’t know how to learn, and we didn’t know that I needed accommodation. So, you know, after working with this doctor, I’ll, I call them the brain trainers, um, you know, I worked with them for a number of years and I was able to go to university and got a bachelor’s degree and then I went to graduate school and did an MBA, so I did make a lot of progress.

But, you know, it, it’s still nowhere near, uh, normal. So, as a…

So, you did all of that after you were diagnosed?

Yes.

Okay. So, you were in your 30s at the time?

Yes. Um, I don’t know if there’s a paralysis scale. I’ve never talked about this with the neurologist or my other doctors. So, if there was one from, you know, 100% being you’re totally paralyzed, I’d say I’m 25% on my left side.

It’s, it’s that much of a difference between the two sides of my body.

And has that improved since you did the therapy?

No. Not at all.

So, so, so that, because, because I’m wondering too, had, had they known, I mean, you know, it, we, we, we can’t go back to the sixties and, and fix what was happening at that time, but had they known, would getting the therapy right away have helped recover some of the loss that that you had and inabilities like motor skills and everything?

All right, I think most likely Again, because kids are more neuroplastic than we are adults. I mean you really have to grind to achieve neuroplasticity as an adult and You know, I’m still trying to do new things every so often.

I’ll try and draw you know, and so I’ll go on YouTube and You know, how do you draw a face for six-year-olds and, uh, things of that nature, because my dominant hand isn’t really good.

Right. Right. I’m trying to think if I were trying to do it with my left hand, it would, it would take more coordination for drawing to do things.

And if I were, well, I used to write with my left hand all the time, but out of practice now, it would be more awkward with it.

I’d like to think that today the, there are better modalities. for working not only with child stroke victims, but with adult stroke victims, there’s a lot more recovery.

Um, they just know how to, how to treat you better.

Yeah. I think, yeah, time has given more experience, um, more research has been put into brain health even with that. So, I think that’s, that is part of it there. So, parents who have a young child who either had a stroke at birth or before birth even during that process, or they’re, little bit older, but still in those early years. Um, what type of support do you think that they should have involved with them either as parents or just as therapists for their Children? Um, you’re talking about the doctor that you had worked with. Was that a psychologist or a neurologist?

He was a psychologist who had done some specialist specialized training in neurotherapy. Um, I think, you know, today you’d start off with somebody, the doctor getting you hooked up with an occupational therapist and, and a physiotherapist. And, um, you know, depending on the person, like different modalities will work differently for each person.

So even if you and I had the same brain injury, they’re like fingerprints. You know, mine is mine and yours is yours. And the therapy that works for me may not work for you. So, you might have to try a few different modalities to help your child along, but they’re, they’re out there and hopefully, you know, you’re covered by, you know, various insurances and whatever to help you along because it can be pretty expensive.

When you’re in, you’re in Canada and we’re in the U. S. and I know it’s, it’s kind of a battle no matter where you are as far as getting coverage for some of the, the therapies that you have. The, um. So, I, I did want to ask you, so in the intro I talked about, um, you having a traumatic summer. Um, I believe it was the summer of 2009.

Is that correct?

Correct. Yes.

Do you think that the stroke that you had at infancy led to the events that happened that summer?

You know, that’s a great question and I’ve asked my various cardiac experts and they don’t see a correlation. Um, they actually, they know what the condition is that that caused me to have that horrific summer.

Um, and it’s something you don’t usually see until men in their seventies. It hit me in my forties and just hammered me. And, uh, they don’t know why this happened to me. You know, these are things people can make a guesstimate. You know, they can say maybe your vagus nerve was damaged. Or. You know, something like that, but there’s no real way of knowing, but it’s, it’s a good theory.

Yeah. It’s, it’s kind of interesting. You know, wonder cause the brain controls everything. So, um, you know, how was that on there? Well, speaking of that summer, you have a book that’s out that talks about that. Um, in fact, the name of it, I believe is the summer I died 20 times. Is that correct? Do I have the right name?

Yes. So, the summer I died 20 times, tell, tell, tell us about the book. Um, oh, there, I’d say he’s, he is ready for that question. Um, those that are listening, we’ll, we’ll put the link in the show notes so that you can, can access that. Um, but tell, tell us a little bit about it, um, for anyone who may want to, to go and find that.

So, at the time I was a business professor, I was actually teaching an economic session and I was home marking papers. And, um, I suddenly woke up at my desk from what I thought was like a, a deep sleep and it was a horrific experience, and I didn’t know what was happening to me. Um, but the short story is my heart had stopped and, and it had stopped for quite a while.

So, the condition is called, uh, sudden onset severe heart block. So usually at heart block, it goes in stages. And I might have this reversed, so I think third degree is the least problematic, second is, and one is, you know, you’re likely to die. And uh, I, I went from three to one really, really quickly.

And uh, they just, you know, they kept, I’m an overweight, middle aged white guy, so they get heart attack, you’re having a heart attack, you’re having a heart attack, but then they would do the blood work and. The enzymes that show you’re having a heart attack weren’t there. So, but they, they were determined to prove I was having a heart attack.

So, it went on for months until, um, we caught it on film, uh, on a halter man, halter monitor. And, uh, then they saw what was actually happening. And I was in the hospital when that happened and they, um, I forget exactly how many days. Um, I had a good three or four more episodes. Right in the hospital and the best thing about all this It’s almost every time that my heart stopped, and my blood pressure would go to zero.

You have no oxygen in your brain and you’re clinically dead for 30 seconds or more. I would hit my head on whatever was the hardest thing in the immediate area. So, I was just layering it on to that original initial brain damage. It’s just, you know, you know, before we’re, we started recording, you were telling me about, um, the young man working with the toppings.

Yes. I’m just like loading brain damaged toppings.

So, your, so your heart is stopping. Your head is becoming, I’m assuming concussed at that point, if you’re hitting your head really hard. Um, and then you’re already dealing with things that you are trying to, to reverse through therapies and everything to, to, to get everything working in the, in the right direction.

Wow. Well, so this is, this is your story of that journey through that summer, correct?

It starts in that summer. Um, and it’s a tiny bit of a spoiler, so you guys can fast forward if you don’t want to spoil it. So, the fix for my condition is a pacemaker and they finally implanted a pacemaker in me, and the pacemakers are great while they’re working.

Oh, no.

I’m 100% dependent on a pacemaker to replace the electrical signals that aren’t working in my heart anymore. And in 2013, the pacemaker decided to fail.

That wasn’t very long.

No. Um, so we’ve got suspicions of. Of what might have caused that. Um, so, you know, we can go all area 51 on this and stuff like that.

But, um, the doctors again, didn’t understand why I kept clinically dying. Because that’s not something that they would look for. And finally, you know, they figured it out and I had a couple of surgeries that didn’t go very well. And in 2018, it happened again. So, you know, the odds of all of these things collectively happening to me.

Of any of these things happening, it sounds like.

Yeah. It’s just like in the billions and billions.

And you’re still with us to tell us about it, which I appreciate because that has been an, an interesting road. I’d say a rough road too. Um, I’m sure during the, um, cause any, any surgery is tough, but you’ve had more than just surgery going on with all of this. Well, you not only have the book out, but you also have a podcast.

So, tell, tell us about the podcast too, because this is a podcast audience, so they may want to come in and listen to what you’re doing over there.

So going with the summer, I died 20 times theme, and the Repeatedly Dead Fred name, um, I have the dead man walking podcast. So, there’s that dead thing. And I, I have four foundational issues that I talk about in, in the podcast.

So, the first is people who have overcome adversity. And there’s some pretty wild stories out there that, you know, I’m, I’m grateful I get to share and when people hear these, they know they’re not alone, but there is a lot of positive outcomes, despite what you’re going through. I had a lot of people help me get my book published.

So, I like to talk to other emerging authors and people in the publishing business to, you know, hopefully give them a boost. As I mentioned, I was a business professor. So, I love talking small business and financial literacy. And fourthly, the thing that has probably saved my life the most and helped me recover the most is intermittent fasting.

So, you know, I, I talked a lot about health and mental health, intermittent fasting. I probably talked too much about intermittent fasting, my friends would tell me, but, um, it’s truly, uh, the health benefits of intermittent fasting are just off the chart.

It sounds like, um, you’ve got, you’ve got a lot of different things going on with the podcast, but I’m hearing through all of it.

I think a lot of my audience may be interested in that. So um, those are listening or watching on YouTube, go over and check it out. Um, we will put the links to how to find the podcast. Are you on audio and on video?

Uh, I’m not sure I’m on YouTube. I’m also on Spotify and Apple and Amazon that I know of.

Well, this, this is really good. Do you have any other projects working, working on right now?

Well, I’m working on a follow up book, um, because it doesn’t end in 2018, um, there’s a few more heart surgeries. Um, I’ve had a couple of pacemaker surgeries that I think I’m the only person in the world who’s had these. Wow. So, my surgeon is, is a wizard. He’s like Harry Potter level wizard. And, uh, you know, my last surgery, which. Was last November. Um, it was supposed to be 25, 30 minutes and ended up taking three hours.

And, uh, you know, so there’s just, you know, complications that never happened to other people happened to me and, um, you know, my surgeons on the phone with, you know, his surgical mentor and they’re talking and saying, can we do this? Can we do that? Can we, you know, I mean, it was just amazing. And the, uh, there’s a nurse at a monitoring station for the pacemaker.

And she’s calling the pacemaker company to say, you know, what happens if we do this, and we’ll do that. And, you know, it does avoid the warranty, joking about that part, but, you know, I mean, there were a lot of people, uh, working really hard to make that last surgery very successful.

Definitely have a lot, a lot to say and a lot of stories to tell, thankfully, because I’m glad you’re still here among us.

Me too. Um, You know, people ask if, you know, well, I don’t want to get into the religious part, but, you know, somebody wanted you alive is, you know, a version of the, so, you know, what do they want you alive for, you know, you can only make your best guess, but seeing as I’ve been given so many opportunities, I think I have an obligation to try and help other people go through whatever they’re going through.

And that’s what I hope to achieve, you know, with the book and the podcast. And if I get some speaking gigs hint, hint to the audience, love to talk to you in person. Um.

So, he is available if we will have, actually speaking of that, how’s the best way for people to get in touch with you?

Um, they can go to, um, my Instagram, which is @repeatedlydf, I didn’t want to make it too long, so @RepeatedlyDeadFred, um, they can find me there. Or they can find me with my email, Repeatedly.Dead.Fred@gmail. And those are the two easiest. Or LinkedIn, Fred Rutman on LinkedIn.

Well, Fred, thank you for, um, for joining me today. I appreciate you sharing your story.

And, um, listeners, we’re gonna, we’re gonna talk a little bit more about childhood strokes in the coming weeks, but I wanted Fred to come in and tell us about his ’cause this was such an unusual situation and, um, and I, I, I, I don’t like that you’ve had to have all these things happen to you, but I appreciate the story behind them.

That’s not what you said in our initial meeting.

I know, I know my initial response was, “Oh good,” but that’s a whole other story, but, but thank you. Thank you for, for sharing it with, with my audience and letting us get to know you a little bit. And those that are listening, um, be sure to, to check out his book and his podcast as well.

Thank you, Tonya. Much, much appreciated.

The post Episode #75: From Childhood Stroke to Triumph appeared first on Water Prairie.

Show Notes:

Find the full directory at waterprairie.com/listen.

In this interview, Melissa Ortiz, Senior Advisor for ABLE Americans, discusses the mission and initiatives of the organization focused on advocating for the rights and inclusion of people with disabilities. The conversation highlights several key points:

Focus on Human Dignity: Melissa emphasizes the importance of recognizing the inherent dignity and value of every individual, regardless of their disabilities. She believes that every person is made in the image of God and should be treated with respect and consideration.

Goals and Programs: ABLE Americans aims to create impactful policies, resources, and support systems for individuals with disabilities. Melissa mentions their plans to develop an app, a speaker’s bureau, legal assistance, and a job finder tool. They seek to address a range of issues including education, employment, healthcare, and more.

Collaboration and Advocacy: Melissa shares her commitment to collaborating with various organizations, government agencies, and policymakers to promote inclusion and positive change for people with disabilities. She discusses her efforts to engage with politicians from both sides of the aisle to ensure that disability issues are properly addressed in legislation.

Championing Individuality: Melissa underscores the need to view each person with a disability as a unique individual rather than defining them solely by their condition. She advocates for breaking down stereotypes and advocating for policies that empower individuals to participate fully in society.

Involvement and Support: Melissa encourages individuals, families, caregivers, and educators to get involved by sharing personal stories, contributing resources, and connecting with ABLE Americans. She stresses the importance of joining together to create positive change and to support one another on the journey toward greater inclusivity.

Overall, the interview provides insights into the meaningful work of ABLE Americans, shedding light on their mission to create a more inclusive and supportive society for people with disabilities.

*******************

Connect with Melissa:

Connect with ABLE Americans:

Sign up for the Water Prairie Newsletter: https://waterprairie.com/newsletter

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Melissa Ortiz serves the National Center for Public Policy Research as the organization’s Senior Advisor for the ABLE Americans Project.

In her role, she develops the project’s strategic plan, marshals key resources and helps oversee the implementation of the project. She also assists the National Center’s president in identifying necessary contractors, employees, strategic partners, stakeholders and donors and serves as a key spokesperson.

Melissa identifies as a “happy warrior” and is enthusiastic about driving a dialogue between people living with disabilities or chronic illness and policy makers across the political spectrum, especially conservatives. She has worked in the classroom in Nashville, Tennessee and in the nonprofit sector in New York City and Washington, DC. She was honored to serve as President Trump’s Commissioner of the Administration on Disabilities. The first female board member of The Conservative Caucus, one of the oldest conservative groups in existence, she currently resides in Washington, D.C. with her husband Tony and Service Dog Dachshund, Annie Oakley.

Full Transcript of Interview:

Tonya: So welcome back to Water Prairie. I have Melissa Ortiz back with me again today. If you watched episode 72, um, you met her already and if not go back and watch that one so you can find a little bit more about her. So if you missed that episode, I’ll put the link in the show notes below so you can go back and see it. But, um, but Melissa’s back again today, and we’re going to be talking about what she’s doing with ABLE Americans. So Melissa is the Senior Advisor with ABLE Americans. It’s a program created to support Americans who are living with intellectual, developmental, and physical disabilities, and they help to set the policies for those individuals. Did I explain that correctly, Melissa?

Melissa: You did. You did great.

Excellent. Well, welcome back to Water Prairie.

Thank you. Thanks for having me back.

Now, um, we’re playing our game of two, two truths and a lie. And even though Melissa has been with us before, I wanted her to play the game as many times as I could get her to.

So, I don’t know if you guessed her lie the first time. I’m not gonna tell you now. You have to go check and see where that is on social media. But we’re gonna play it again because she’s agreed to bring some more facts for me. So, if you’re listening for the first time, we’ve been asking each guest to bring in a list of three facts or pseudo-facts about themselves.

And your job as a listener is to try to figure out which of the three is a lie. And you can leave your answer in the comment section of the YouTube video, or you can go to social media on Instagram or Twitter and leave your guess there on the post that matches this episode. So, Melissa, what are your three facts for this episode?

Well, one time, I owned two Newfoundlands. who both weighed in at 200 pounds each. So I was marching around with 400 pounds of dogs at any given time. I also served as Ms. Wheelchair New York in 2005. And lastly, I participated in the track and field Olympic trials before becoming a full-time wheelchair user.

Wow. Now, if you’re not sure how those fit together, go back and listen to episode 72. You might get some clues or will they be clues? We’ll see . So go and le le leave your answer. If you’re going to do it on social media, listen to the episode first, then go leave your answer and um, we’ll see how, how you’re doing on that.

So, um, this episode I want to dig into what ABLE Americans is all about. Um, what are these policies that they’re doing, how are they getting into it and all. So let’s get started with just defining what is ABLE Americans and how did it get started?

Well, ABLE Americans is a limited government free market approach to all things disability policy.

Whether it’s… It’s education, housing, transportation, employment, and one of my big passions is, um, all things HHS, Health and Human Services, Medicare and Medicaid. So it is a limit, it’s not, it’s the idea that yes, the money is important and the government should create a safety net for the most vulnerable people among us, but.

People still need to have the right of self-determination. And the government needs to provide the framework, not run the whole boat, not drive the whole boat. The way that this all got started was in 2011. I, I, we moved to D. C. in 2008. Um, and as I watched as Obamacare became law, and all these things were happening, And I noticed that there were all these disability groups that were always angry and always yelling and always chanting.

And one day there was a group that they were like, label jars not people, label jars not people. And I, I didn’t understand what they were talking about. And I don’t think they understood what they were talking about. Come to find out they were protesting budget cuts. And I’m not sure what the chant had to do with budget cuts.

But I discovered that even though the Americans with Disabilities Act that became law in 1990 was a bipartisan effort, conservatives, Republicans, and specifically fiscal conservatives have um, seated the field on disability issues. I couldn’t find anybody that was right of center that was doing disability issues that didn’t result in more government intervention.

So I founded Able Americans. Everybody thought it was a nice idea and there were a lot of people that I know were behind my back saying, well isn’t that cute? She thinks she’s going to make a difference all by herself in how we do policy. Well, I did make a difference in some situations. I began to bang the gong because I think I’m one of the few people in America who actually read all 2, 000 plus pages of Obamacare and could cite chapter and verse of where the problems were for people with pre-existing conditions, disabilities, chronic illness, special needs, whatever you want to call it.

Um, it… So, I came up with this group and I wanted to focus on what we could do, not that we, not simply that our bodies were disabled, but that we were capable of being work, of being workers, of being good, productive, tax-paying citizens. And there’s nothing that will make a, a Republican’s eyes light up faster than telling you, telling them that you’re going to help somebody become a wage-earning taxpayer.

Not because they like to charge taxes, but because they like to manage the money. It gained more traction that way. I struggled and struggled. I had a lot of great support, but it just, I just couldn’t seem to grow and get traction. Then in 2016, President Trump was elected and in 2017, I became a member of his administration and I had to shut down Able Americans because I couldn’t, it was considered a conflict of interest.

Then, after I left the administration before the term was over. I didn’t know what was coming next. Turns out I had breast cancer. So, and this all has to do with what ABLE Americans is. Because I discovered what I already kind of knew from some other experiences that I’d had. I discovered going through breast cancer treatment that there’s a lack of understanding of the medical needs of people living with disabilities when it comes to medical needs outside of their specific disability.

they didn’t have accessible tables in the radiation lab. Where I needed to get radiation treatment for the, for the cancer. They, we had to go, and part of this was because of Covid, but we had to basically force them to obey the law and guide and regulations to allow my husband and service dog to be with me during chemo.

I, I mean, just all these things. So I learned that there was a, a lot of, a lack of knowledge and just plain old bad policy on the books. Right about the time, in fact it was a year ago on June 20th, I had a screaming fit before the God of the Universe and said, look God, if you want me to do Able Americans, then I need for you to bring a think tank that will buy Able Americans from me so that I don’t have to do office space and I don’t have to do fundraising and I don’t have to do administrative stuff, that I can just focus on the policy and on the building of coalitions and allies and getting the message out.

About that time, I got an email from my dear friend, Paul Teller, who is, I call him my faux brother, and he calls me the sister that he never ever wanted and got stuck with. And so, he sent me an introductory email to a man named David Ridenour from the National Center for Public Policy Research, and we had lunch the beginning of July, and I went to the lunch thinking it was the 45 minute Because he, because Paul said, listen, he wants to talk to you about able Americans.

I thought, yeah, right. Okay, fine. I’ll go to this meeting. That’s great. And, um, I went to the meeting kicking and screaming just to shut Paul up and it turns out that David came at it because Paul had said to him, she’s my go to for all things right of center with disability policy and she’s my go to for building bridges between left and right on disability policy.

He was kind of going to himself. Yeah, right. Okay. So we both went for what we thought was going to be a 45-minute courtesy lunch and it was the day after. So it was, it was the day after I pitched this screaming fit before the Lord. And. A 45-minute courtesy lunch became a three-hour strategy session on how ABLE Americans was going to be acquired by National Center.

I would come on board to run it and still be allowed to do my speaking things that I wanted to do, and how exactly we were going to set up the very first conservative, ideologically conservative policy shop on disabilities since the passage of the ADA. And I call it building an airplane in flight, and we are building it.

Building that airplane in flight. And I have a great team behind me at National Center. Um, I, David is very good at managing my snarkiness. And, um, I’m learning that sometimes my snarkiness can be a bit disrespectful and I need to, to can it. But he has a heart because he has two children with intellectual disabilities who have autism.

He understands disability policy because he, he lost his wife to breast cancer right before covid. And then covid happened and he found himself stuck at home 24 hours a day with a son who was very low functioning autism and violent.

And he found out that Civil rights were being violated because children with educational disabilities are supposed to get 20, supposed to get 365 services in any, in any situation. And that wasn’t happening. Then he said, he tried to get all these different people to, to get interested. And he said, wait a minute, I’m the president of my own think tank.

I’ll just hire somebody that does this. And then through just a. a set of God-ordained circumstances, um, and conversations this came to be. And it’s been really fun to be able to pull my policy chops and my, um, play nice with others chops, which I apparently still need to work on because I get really twitchy when people say things like, well, shouldn’t everybody with a disability just live in an institution?

I don’t understand why the ADA requires a wheelchair-accessible bathroom to which I, before I could stop myself, I looked at this older gentleman and I said, Well, I sort of like to be able to go to the bathroom when I’m in public. I don’t want to have to wait until I get home or wear a diaper. And he said, Oh, I hadn’t thought about that.

And, you know. It’s, you know, you don’t know what you don’t know until you find out that you didn’t know that. So, that is how Able Americans came to be, and we are focusing on a couple of things. The, one of the biggest things that I’m tickled to death that we are doing is a deep dive into all federal disability programs.

Right now we’re starting at HHS. And we’re going to look at the money, and where’s it going? Is it really serving people with disabilities? And does there need to be a triage in how, you know? Does everybody with autism really need to go in one bucket or do they need to be tiered responses to what their level of need is?

Does everybody who’s blind need to go in one bucket or do they need to be tiered as to what their needs are? That sort of thing. And we are hoping to look at that and recommend policy to the Congress and to state governments about better ways to serve people with disabilities and bring them fully into mainstream American society to the best of their ability.

Best of their ability to integrate. Another policy initiative that we’re working on that I am really excited about is Medicaid portability. I ran into a member of Congress last week who asked me what I was working on. And I said, Medicaid portability, he said, isn’t already portable. I said, No, I said, if somebody leaves Colorado and wants to move to New Hampshire, they lose all their coverage until they can start over and I don’t know what the situation, you have to become a resident of the new state, and then you have to get on the waiting list to get on Medicaid.

It’s not an automatic thing. And this has to be done differently. We have to do it differently. Um, Annie apparently agrees. So, we have to do it.

That’s something a lot of our parents are interested in. Because they can’t relocate without starting that wait all over again.

I need those stories because if I can get in front of governors and tell those stories, I think we can get, make a real difference into how quickly we can get this done.

Because from what I understand, it can be done with an executive order in the state. The governor can just say, I will accept Medicaid from this state or I will accept Medicaid from that state. But I’m doing some more research into how that’s going to work. I, you know, if any of your parents, the parents who are having those difficulties or adults who are on Medicaid are having those difficulties, I know of one, one acquaintance who had a full ride to Berkeley for a PhD program and she couldn’t go because she would lose her Medicaid coverage.

And, I mean, it was her dream program and she had to turn it down because she had a very significant, um, Neurological disability and couldn’t be without the coverage. Her medication alone costs 25, 000 a month. And that’s just not feasible for somebody without insurance. So if anybody wants to reach out to me, I’m going to give my contact information early.

Um, you can find me on Instagram @dcbelleonwheels. Same thing on Twitter. Um, on Facebook, I am. We have an Able Americans Facebook page, but we also have, I am Melissa.D.Ortiz5. I think or maybe just just look up Melissa Ortiz until you see either a picture of me or a dachshund.

I will, Annie Oakley my service dog is a dachshund and she a lot of times just to throw people off I put her picture up as my profile picture and so look for that or feel free to reach out directly to me by email. That is [email protected]. And if you would like to adopt a dachshund who is misbehaving at the moment I would also be open to that conversation

We will put the links for all of those um Um, and the show notes so that anyone who wants to contact you can look there to, to get that information too.

And one more link is, um, nationalcenter.org/programs/able-americans. And that will take you right to the program page and you should be able to get in touch with me through that. Um, but, and so the one more thing that we’re working on that I’m incredibly excited about as well.

We’re doing some, we got this amazing grant from a foundation here in D. C. that’s has a heart for disability and we are running like a house of fire doing the research and we’re developing an app for iPhones and Androids that once it’s up and running to its full potential, we are going to, you will be able to put in Your location by zip code, your diagnosis, and your need, what specifically you’re looking for.

Whether it’s a wheelchair-accessible vehicle, a new set of crutches, or whatever, or, um, um, respite care. Those are just some examples, and everything within 100 miles will pop up. So that, It’s just exciting what I think we’re going to be able to do with this if we can get it together.

Yeah, that’s, so, um, listeners that may have information that should be on that app, should they send you that information as well?

Yes, please. Yes, please.

So just to your, your regular contact or do you have a form out there?

No, just send it to my regular contact and I will start, um, start. disseminating the information where it needs to go. I joke about this being an airplane in flight, and it, there’s an old military joke about building an airplane in flight, and then there’s also a story that I don’t know how true it is, but it’s such a cool story that I like to tell it, and when the state of Israel was being founded in 1948, and they would, um, over Egyptian and Jordanian tanks.

Everybody carried a blue bucket of paint with them, and they would, when they took over when they would seize a tank, they would just paint a blue, uh, Azure blue star of David on the tank and drive off. And so that’s what I feel like I’m doing. A lot of times is that I am building my army in the middle of a war and I, Able Americans wants to focus on the best policies for helping people with disabilities of all sorts and their families live their best lives.

I want to further that focus by honoring the, the image of God in every human being, whether they have a disability or not, and helping them show. That disability isn’t the result of something that was wrong, but a way for God to be glorified in the way that you live out your purpose. Now, I want to be very clear in saying that National Center is not a religious think tank, but several of us there are people of faith, and I, my, my lead researcher and I, daily discuss people being made in the image of God, and when I get discouraged, he’ll say things to me like, Melissa, 61 million Americans who, with disabilities, who are image bearers of the Most High God are counting on you to get this right.

And so that makes me kind of, you know, take myself in hand and keep going. So because it’s a lot of work and it’s not something that people want to talk about, there’s a survey that was done within the last five years that says that two out of three people surveyed were uncomfortable around someone with a disability.

Two out of three people. And it didn’t matter what the disability was, they were uncomfortable. I’ve seen it with my own eyes, and I think that that’s one reason we have such a problem with ableism. But that’s another topic for another day. One of the things that I’d like to do through Able Americans, besides creating great policies and creating a resource bank for people, Um, and even creating a legal stable of attorneys that can help when there’s discrimination and malpractice and civil rights violations, things like that.

I, and we want to create a speaker’s bureau, all those things. One of the things that I want to create is a way for people to find jobs, a way for people with disabilities to connect with each other and to understand that the policy matters because they matter as human beings.

So, can you share, um, any success stories or notable achievements of the able, able Americans program? You’ve told us some of what your goals are, but what are, what’s, what, what’s happened already?

Yes, I can. Uh, two things. that I’m really excited about. Um, well, three things. So the first thing is, even before I was officially on National Center’s payroll, uh, we met with Senator Cruz’s office about making sure that Children with disabilities were included in the educational, um, reparations bill that he was putting together post COVID.

And it got done. It got put right in that bill. And that was a direct effort of my and David Ridenour’s work with Senator Cruz’s office, so that was very exciting. Um, another thing is that physician-assisted suicide is becoming quite the thing in the United States. And everybody thinks it’s this great, compassionate thing. And if they would just pay attention to what’s going on in Canada, they would realize how dangerous and slippery slope it is.

Um, Able Americans was part of the coalition that defeated medical aid in dying in Maryland. And, and that just happened. So, they will have to wait two years before they can bring it up again. So that’s, that’s pretty exciting. I’m pretty proud of our efforts on that. And then the last thing is, I am one of the first conservative women who wrote an op ed published above the fold in the weekend edition of USA Today.

And in the print version, not just the online version, but the print version. And that may not sound like a big deal, but it was a really big deal because another conservative woman decided to attack people with disabilities. And I just couldn’t let it stand. I just couldn’t let it go without comment. And I didn’t think that anybody would want to publish it, and they did, and it has created so many opportunities to talk about how people with disabilities aren’t monoliths, liberals aren’t monoliths, and conservatives aren’t monoliths.

Americans aren’t monoliths. That’s why we call ourselves a melting pot, um, and all anybody with a disability wants is to be part of that melting pot, the American melting pot. We have an education process in front of us that needs to happen. That we need to learn to look at individuals as individuals.

Whether they come from the same ethnic background or same nationality background, heritage, than we do. Whether their skin is the same color, whether their bodies work the way their brains work the way our brains work. We need to look at each person as an individual regardless of whatever box that we want to put them in.

And then shake them all out of the box and put them in the melting pot and stir it together.

Perfect. The, um, you mentioned a little bit, because you talked about meeting with, um, Senator Cruz. Um, how does Able Americans, how does the program collaborate with other organizations and government agencies to promote inclusion and support for people with disabilities?

Because we’re so new, we officially got started in this iteration in September. Um, we wanted to do a lot of research first. That’s why I say by, you know, kind of building an airplane in flight or taking over the tanks as we, as we seize them. We are doing the research, but we’re also, any opportunity that I have to talk to anybody on either side of the aisle that cares about disability policy, I take it.

And, um, I am right now setting up meetings with all of the chiefs of staff on the right side of the aisle, on the hill. And there are a lot of them. I’m going to be busy for a long time taking these meetings with anybody that will meet with me. Uh, and then I’m going to go to the left side of the aisle and start with them.

And then I brought from my days as the Commissioner of the Administration on Disability at HHS, I brought a list of contacts in, um, disease-specific and condition-specific organizations. And I am reaching out to those people and letting them know we’re here. One of our roles as policy makers, we, we look at ourselves as being supports to policy makers.

And so one of my roles will be to be, read legislation and see is there anything in it that is harmful to a person with a disability and then raise that and offer a solution. I want to be very careful about not just presenting problems, but having solutions to go with them.

Everything I write, every speech I give, everything I talk about has to have not just a policy problem that it addresses, but the solution to that. And that’s what I’m doing. What I’m finding though, no matter whose office I call, what political persuasion they are, As soon as I start to, or email, as soon as I start to make these appointments, they want me to talk to their health care people.

So part of the education process is explaining that disability is health care. Disability is education. Disability is employment. Disability is transportation. Disability is housing. Disability is, if it affects your everyday life as a non-disabled person, it affects your life as a disabled person. And I had An economist told me he didn’t do disability policy.

I said, wait, wait, wait, you’re always talking about the debt and the entitlement program reform. What do you think that is? And he looked at me and he said, I had never thought about that. I was just looking at the bottom lines on things. I said, that’s disability policy. And if we can get, 61 million Americans who are disabled, 75% of those people are either unemployed or underemployed and they want to work.

Okay. If we can get even half of those people back to work, it will lower our debt to, to gross national product ratio significantly.

What are some of the future developments that you’re, look, developments that you’re looking at? You mentioned the app. What are some of the other programs that you’re looking at or collaborations or anything like that?

The speakers bureau, um, getting maybe even chapters of Able Americans in different states. So that people can form, you know, again, this is policy, but there’s a program through the Developmental Disability Council in each state for people with intellectual and developmental disabilities for the most part that’s called Partners in Policymaking, and I would like to develop a partnership like that for parents and adults and children with physical disabilities to teach them how to advocate and to help, help them learn how to be policy advisors.

Yeah, I know we, um, I’ve had a couple of interviews with, um, some younger adults who are beginning to, to speak out. And those are going to be your, your startup group for that, for that, because it’s, it’s our next generation and they’re, they’re ready and willing to go. They just need to know where they’re going with this.

The existing generation, I think, is going to have to get really serious about speaking out against medical aid and dying. Because there’s this idea that if you have a disability that you’re somehow suffering so badly that you should not want to live, and it would be cheaper to help you not live than it would be to treat your symptoms.

That’s a very dangerous slope right there.

It’s extremely dangerous. I wrote an article, I think it was in January, on, for International Holocaust Awareness Day, um, which was the anniversary of them finding, I think, Dachau. I, um, my brain is getting a little fuzzy, so. But anyway, so it’s the, the, the day, International Holocaust Day that’s recognized by the United Nations.

And I wrote an article for the Washington, um, I think it was for the Times, it was either the Times or the Examiner, about the forgotten victims of the Holocaust. And what a lot of people don’t realize is that, uh, there was this little project called T4, Acton T4, and it was the taking of people with disabilities from their safe environments and putting them in what were the pre-runners for the gas chambers.

And perfecting the killing system so that, The undesirables were killed first and then they came for everybody else.

Right.

And it, not acceptable.

You gave us your contact information earlier. How can, other than giving you, um, information of what’s in their area that, that could be included on the app, how can people with disabilities, families, caregivers, how can they get involved with ABLE Americans and its initiatives?

Um, they can get involved all sorts of different ways. We would love to hear your personal stories. Uh, your… The hard things that you’ve run into and how you dealt with them. We’d like to know what you’ve learned that you didn’t know before. That would be a help to somebody else. We would like to develop a speaker’s bureau so that we can hear the different stories of different people.

If you have something that’s working particularly well with the state or local or federal government in your area, we would love to know about it so it can be replicated. Anything like that. And then, I’m, I haven’t, because we are a policy think tank, I don’t know how far into advocacy and that kind of thing we’re going to go, but I have a real heart for connecting people with each other who are walking the same path.

Because sometimes it just helps to be able to look somebody in the eye and hear the words, I know, I see it, I hear it. So that is. That is, um, what they can do to be involved. So, and on a very, from a very, very, very selfish standpoint. If you just want to drop me a note and tell me to keep going, I would appreciate that too.

Yup. Um, follow her on Instagram and on Facebook so you can, can keep in touch with what she is doing. Cause she does a good job of, of leaving little tidbits here and there of where she is and who she’s meeting with and what’s going on. So it’d be a way to, to maybe leave her some notes on the post with that as well.

Absolutely.

Melissa, thanks for, for telling us more about this. I think, I think this is a phenomenal program that you started. I’m looking forward to seeing what’s, where it’s going to be in the next few years, um, with it. And if we can get some of our parents that are listening, parents, caregivers, teachers, whoever’s out there.

to start feeding you the resources that they know of. Maybe the app can get out even faster and be available to more sooner. Um, and I could see that being an ongoing updates as you’re getting more once, once it does roll out, continuing to update that. Well, thank you. I appreciate you spending some more time with me on, on this topic. And I look forward to, to the next time we’re able to talk with you.

I loved it. Thank you so much, Tonya.

The post Episode #74: Advocacy for all: ABLE Americans and Disability Rights appeared first on Water Prairie.

Show Notes:

Find the full directory at waterprairie.com/listen.

In this insightful interview, we sit down with Nathan Gutierrez, a remarkable individual with spina bifida, to delve into his journey of living with a mobility disability. Nathan’s candid sharing takes us through his childhood experiences, family support, education, healthcare insights, and his inspiring path to independence. Join us as we explore his triumphs over challenges, his engagement in sports and social activities, and his valuable advice for parents and individuals facing similar situations.

🔹 Childhood and Family Support: Discover how Nathan’s parents nurtured his independence from a young age, empowering him to overcome obstacles and actively participate in daily life.

🔹 Educational Experiences: Gain insights into Nathan’s education within mainstream schools, his perspective on effective communication, and the significance of self-advocacy and Individualized Education Programs (IEPs).

🔹 Healthcare and Transition to Adulthood: Learn about Nathan’s proactive approach to maintaining bladder health and preventing urinary tract infections (UTIs). Explore his journey from childhood to adulthood and the importance of gradually involving children in their healthcare routines.

🔹 Sports and Social Life: Dive into Nathan’s engaging experiences with wheelchair basketball, youth sports, and coaching programs. Discover how these activities not only contributed to his physical well-being but also enriched his social interactions and self-confidence.

🔹 Tips for Parents and Individuals: Nathan shares invaluable advice for parents, emphasizing the significance of promoting independence, creative problem-solving, and collaborative approaches to managing mobility challenges.

🔹 Wheel Life Coaching: Nathan’s latest venture, “Wheel Life Coaching,” is dedicated to helping individuals and families with mobility disabilities navigate their unique journeys. Learn how Nathan’s coaching aims to simplify information, provide tailored solutions, and empower individuals to achieve their aspirations.

Join us for this enlightening conversation, as Nathan’s story reminds us of the power of determination, family support, and the unwavering spirit to thrive despite life’s challenges. Don’t miss out on this heartwarming and informative discussion – watch now!

*******************

Connect with Nathan:

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Nathan M. Gutierrez, Founder and CEO of Wheel Life Enterprises, was born with Spina Bifida and uses a wheelchair for mobility. He overcame kidney failure, became a youth sports nonprofit leader, worked in local government, and was nationally recognized for his work. Nathan is a Certified Corporate Speaker, Board Certified Clinical Hypnotherapist, and Life & Success Coach, committed to empowering individuals with disabilities to become more independent and develop a plan for their future.

Full Transcript of Interview:

Tonya: So, Nathan, welcome to Water Prairie.

Nathan: Thank you for having me. I’m glad to be here.

We’re going to be talking today about your journey with Spina Bifida and some of the things that you’re doing. But with all of my guests this season, I’ve been playing a game called Two Truths and a Lie. And, um, listeners, if you haven’t been listening to other episodes, your job in this is to listen to Nathan’s facts that he’s going to share with us.

And I say facts or pseudo-facts because one of them will not be true. And, um, if you’re watching on YouTube, you can post your guess in the comments. If not, then go to Instagram and Twitter and look for the post that matches this episode, and place your guess at the bottom of that post. And a week after we release this, we’ll come back and we’ll put the answer so that you can check your work and see, see how you did.

So Nathan, would you be willing to share three facts with us about yourself or pseudo-facts that is?

Uh, first one is, uh, I played in the national wheelchair basketball association championship game. I’ve also been a two-time TEDx speaker. And the third one is I spoke to the White House, U. S. Department of Labor.

Wow. Wow. I’m pretty impressed with all three of those. So, we’re going to have to see which two are true, and which one is false. Um, so anyway, post your guesses, um, after you listen to this episode, of course, so finish listening first and then, then go and post your guess.

You might get some, uh, some tips to what the actual answer is. If you listen through all of it too, we’ll, we’ll see how our conversation goes. Well, last week we featured, um, Melissa Ortiz. She was talking about her journey with spina bifida and, um, her personal story there, and I’ve asked Nathan to come on because I wanted to continue the conversation a little bit more.

And for our parents who have children who have a diagnosis of spina bifida, I thought this would be really good, um, to help me understand it more, but to help them also get a better perspective of, um, some of the stories of adults who have, have gone on and what they’re doing with their lives today. So, um, so Nathan has agreed to come and talk to us some, and, um, Nathan, I wanted to ask you if you could, would you share with us a little bit about kind of how things got started?

Did your, did your parents know before you were born? Or was this something that was after you were born? How did, how did they first find out that you had spina bifida?

Well, it was a complete surprise to them. Uh, we’re talking 40 years ago, first of all, back in 1983. So, they don’t have the, they didn’t have the technology that they have now to diagnose, uh, different conditions and disabilities.

So, um, it was, like I said, I was born and, uh, I’m screaming as any normal baby does and when they realized that my arms were, were moving but my legs weren’t, they immediately turned me over onto my stomach and they saw about a quarter sized, uh, hole in my spine at the L1 level and the nerves were exposed and they knew immediately that I had spina bifida and it was at that point that they told my, my parents that, hey, you know, he’s never going to walk, he’s never going to talk, he’s never going to have a, any sort of quality of life.

So, it’s your decision on what you want to do, but we highly recommend that you, you probably give him up. And, you know, fortunately, my parents didn’t listen, and, uh, in fact, my mom was very offended, because here I was just born, and it was supposed to be the happiest moment of their life, and within minutes, they were saying, well, you know, he’s, he’s not going to be anything worth saving. So, you know, if you want to move on with your life, that’s okay, you can put them up for adoption.

And I’m so thankful every day that my parents decided to keep me and to raise me as I am. And then, looking back, well, my doctors were wrong. So, they were only wrong about one thing, and that was that I was never going to walk. Technically, that’s not even completely true because I did walk a few times in my life with the help of braces.

But then I realized that that was more challenging than being in a wheelchair. So I’ve just managed in, uh, to be in a wheelchair for most of my life and it’s, it’s made me the happiest because I’m mobile and able to do whatever I need to do using my chair.

Right. So, I’m trying to wrap my brain around a doctor telling your parents, do you want to just give him up? I mean, I, as, as a mom, I can’t even comprehend that. I’m just, so, so what would their answer have been that you would have been adopted by a family or put into an institution? What would they have done had your parents said?

Yeah. They said, they told my parents that I wouldn’t have any quality of life. I wouldn’t walk, I wouldn’t talk. And I would have a lot of challenges. That they would have to basically take care of me the rest of their life. And that there was really no way for me to ever be independent or successful in my life.

Well, then the other part of that statement that doesn’t click with me, I, I have MS. So I understand some of the nervous system and you know, how things connect and all. I don’t understand how. A spinal cord injury would affect your ability to talk. Does that really could, could, could that have been the outcome?

Well, it’s not the spinal part of it necessarily. It’s because I was born with hydrocephalus as well, and that’s water on the brain. Uh, and that’s connected to spina bifida more times than not. Uh, not always, but because of the, the water on the brain, the ventricles were swollen and sometimes that can cause uh, brain damage.

Okay. That, that, that does, doesn’t, I’m just, I’m just thinking, you know, if it’s just the, the spine, it wasn’t making sense on that, but that, but that I do understand because it could have caused a damage or something because of the, the pressure there I would assume.

Correct. Yeah. Well, and spina bifida does have, have its own challenges. I mean, it. You can’t walk, and there are bladder and bowel issues, which is what, you know, something I’ve dealt with most of my life, or really all my life, as most people with spina bifida do as well, uh, depending on the severity and the type of injury and where it’s located, that kind of thing. So, there are a number of factors that are involved when it comes to spina bifida.

So it’s not just the, well, they’re never going to walk again, they’re just going to be in a chair. It’s, it’s not that simple. There are a lot of other things to get taken into consideration. And then my parents were, well, when you look at today, they weren’t that young, but back then, uh, my dad was 25, my mom was 23, and I’m the firstborn.

So, you know, again, you’re looking at the, the moment of time where they’re expecting their firstborn, and me being the son, of course, they were both thrilled with that, especially my dad, being that I could carry on the family name. And then I’m born and then the doctor, within seconds of me being born and saying, Hey, there’s a problem that quickly shattered a lot of dreams, uh, in that moment.

And then for them, for the doctors to say, well, not going to be normal, so you might as well hurry and make the decision now. I mean, they hadn’t even had time to process what that even means.

Yeah.

So it was a very traumatic time for them.

Right. Interesting. Interesting. So, um, so they, so they think thankfully made the decision for you, for you to remain their son, which I, I, I’m just, I just still, still kind of reacting to, to the, to that even in being an option.

Um, did you, so, So from what I know, you have to forgive me, I don’t have a large understanding of spina bifida. Um, so I’m still figuring this out myself, but, um, but you said they were able to see, you said a quarter size section on your, on your spine. Now I, I’m imagining that it could be anywhere on the spine for a child.

So parents that are listening, it may be different, different areas because you’re saying, depending on what it would affect too.

Correct. Yes. So mine is at L1, uh, the lumbar one, uh, and that’s, you know, if you don’t know the spine, the way it’s laid out, it’s just above the tailbone.

Okay. Okay. In my, in my mind, that’s where I’ve always imagined it being. So what is the treatment that they would do? Did you have surgery right away? What did they do?

I did, so they covered the, the opening, the wound, and they rushed me into emergency surgery because they have to close that, that injury, that hole there, um, because the nerves were actually exposed. You can physically see them. And so that’s when they were able to determine, you know, where on the spine it was located, and then based upon those nerves that were damaged, they were able to determine.

What the potential outcome would be in terms of the severity of my injury. So different nerves Okay, do different things. And so, you know, there is some crossover with some of the nerves too, of course But then they were able to explain to my parents, you know down the road This is this is the side of the injury this this is what you can expect You know, and then, and then the lower on the spine it is, the less severe the injury is.

And of course, I’m talking about spinal cord injuries, too. So if anybody gets in an accident or something like that, depending on where that happened on the spine will determine the type of injury and the severity of it. The other thing is that you have two different types of nerves. You have motor nerves and you have sensory nerves.

And they’re exactly what they sound like. So the motor nerves are what help you with the movement, you know, your arms, your legs, whatever. The sensory nerves are, again, exactly what they sound like. Those are what allow you to feel. So, for instance, I had a friend growing up who didn’t have sensory nerve, or he had sensory nerve damage, but he, and he had spina bifida just like me, but it was lower on his spine, and the motor nerves were okay, but the sensory nerves were damaged.

So he could be in his chair, But he can kick his, his knees up and down, but he couldn’t feel. So it’s, it’s a very complex situation at times.

Interesting. Interesting. Yeah. I mean, having a mass, the nervous system itself has just, it, I’m always intrigued with it and just how our body and our brain works with it.

And learn sometimes to compensate with some damage, but not all damage to it. So it’s, um, it’s always, uh, uh, uh, an intriguing area for me to, to learn more about. So as a, so as an infant, you had the surgery. Did you have to have any other surgeries later as you were growing? Or was it just one and done early on?

For that one, it was just one and done, fortunately. A few months down the road, I think I was about three months old, they had to deal with the water on the brain, the hydrocephalus. So what they had to do is, um, they went in and they put a shunt, and in fact I still have it, it’s right here, I can feel it.

Uh, and what that does is it, it pulled all the water out of my brain, and then they wrapped a coil all the way down the back of my ear here, all the way into my stomach. And then when I was, because I was so small as an infant, uh, they coiled it up into my stomach, which would allow it to, to unravel as I grew.

And then at, at some point, and I can’t tell you when, I got tall enough, I guess you could say, to where the, the tube physically broke off the shunt and fell into my stomach. I don’t know when it happened. There was nothing that I felt. There wasn’t an emergency situation. Who knows? In fact, we just discovered it when I went in and had some x rays done.

And you could just see this tubing in my stomach that nobody could figure out what it was or where it came from and it was the whole thing. And it was just sealed up against my stomach lining. And so we finally figured it out that, oh, it’s, it’s the shunt tubing. And that’s when we discovered that it was no longer connected to the shunt in my head.

Um, fortunately, I’ve never had any revisions or issues with the shunt. I have known people who’ve had revisions or trouble with the shunt and have had to go in and have major brain surgery, because that’s what it is, and have the shunt either cleaned out and then, you know, their head put back together, or they’ve had to have the shunt removed completely and then replaced with a new one.

And that, that’s a pretty serious issue. But fortunately, I’ve never had that happen in my life. And now, like I said, the shunt doesn’t work. Because it’s not even connected.

So, so for you, it did, it, it’s resolved itself pretty much. You don’t, you’re not getting the fluid now that you, that you had when you were younger.

No, I, I mean, as far as I know, no. And I, I’ve had CAT scans several times in my life and there have no, been no indications of that ever occurring.

You said that you used braces for a, for a time when you were in school, were you using braces at any of that time or were you in the wheelchair at that by then?

Well, going to school, I was in the chair full time. When I was three, I want to say, is when I had my first pair of braces. And I might have worn them to school a little bit, but I, and I had a walker. I do recall this, but I don’t remember using them that often. It was always the chair. I think I would stand up and walk a little bit with the walker, but it was very cumbersome.

Uh, because they were literally almost full-body. I mean, they were up to my chest in order for me to walk and it was kind of a waddle. I’d have to throw my hips and everything to move step by step. Uh, so that was when I was three and then I went back and had another surgery to, uh, release, uh, behind my knees and behind my, and my heel cords, uh, when I was about, 7, 7 or 8, um, in order to get a new pair of braces.

And I was very reluctant at the time. Uh, I had a doctor, an orthopedic doctor who really pushed me into it. Um, you know, I, I had several people who, who told me that That was really going to be the only way that I was probably going to be successful was that if I could Stand up and walk because that’s how society functioned now We’re talking about pre-ADA here, and I just mentioned that because this last week We celebrated the 33rd anniversary with the Americans with Disabilities Act.

So we’re talking the late 80s here So just shortly before that when things weren’t as accessible as they are today And there was that real fear from family and friends Uh, who thought that, well, if, if I wasn’t able to walk, how was I going to be able to function in a very inaccessible society?

Yeah. Yeah. And it’s, it’s one of those things that, you know, thinking back now, it’s, it’s hard to remember sometimes how much has changed in that amount of time. I do want to hear a little bit about your, your childhood experiences. Um, so you’re, you’re in the wheelchair, accessing, accessing, accessing school, I can’t talk today. Um, did, did you find it, um, easy to make friends? Did you have, you know, like, I’m thinking as, as you’re getting older, maybe into older elementary school, even, um, were you involved, involved in any school clubs or sports or any programs that were going on?

Well, up until first grade, I was strictly in special education, uh, again, because there weren’t that many programs for people who could potentially move into mainstream education at that time, a lot of things were still being going on. Figured out and determined at that time. Uh, much, there was a lot of improvement by that time compared to previous generations.

Some of my friends who were, who were older, they had to deal with a lot more challenges. And I, I thank God that they were able to help pave the way for me to be able to eventually move into mainstream. But up until first grade, it was strictly special education. Uh, starting first grade, I was able to do half day, so I did.

The morning half in special education and in the second half of the day I was able to move into mainstream education. Second grade on, I was able to be fully mainstreamed and from that point through about sixth grade, uh, to answer your question, I, I had a lot of friends. Uh, I was not just the kid in the wheelchair that they saw in their class or out at recess.

I was Nathan, uh, who just happened to have a disability and be in a chair and… A lot of them wanted to push me, and a lot of them tried, but we had to set some ground rules at the beginning of every school year. My mom would bring our two little miniature schnauzers that we had at the time, and you know, we’d visit the class, and we’d show the dogs, and then we’d talk about me and say, Hey, look.

This is Nathan. This is his wheelchair. He uses this to get around as much as your legs get you around. And, uh, it’s important for you to know that you don’t touch the chair unless Nathan says it’s okay. Because it can be very dangerous for him if, if, you know, he were to fall over or something like that.

You know, we had to set those ground rules and those expectations that I was able to do most things on my own, but if there ever were a time that I needed some assistance, I would ask one of the kids, or I would ask an adult, a teacher most of the time, that, you know, who would be more capable of helping me?

And the kids were really good about it. I’d go out to recess, and we’d play basketball together, and… You know, I didn’t have the physical arm strength to shoot on the regular 10-foot-tall hoops, but they always included me. So that was, that was a lot of fun. And, and in fact, as of today, at 40, I’m still friends with a lot of those people.

So, you know, it really helped establish my foundation in getting connected with people in the non-disabled world, so to speak. Junior high is where things started to get tough and we’re talking socially, we’re talking academically. Um, I didn’t do so well academically in junior high and it was because I was really trying to focus on being more social and looking back.

It was not the best choice, but you know when you’re 12 13 years old that’s the most important part of your life and Yep, I almost paid the price for it. In fact in seventh grade. I was elected to the student body government I was the only seventh grader and I was the only boy so pretty exciting time in a young, uh, young boy’s life to be hanging around some older girls.

And, uh, you know, they were cute. And, uh, became friends with them. But it almost cost me, academically speaking, because I wasn’t doing well and I was falling below the performance levels that were expected of me. And the principal called me in. The, um, head of the, um, the department for, uh, You know, special needs came in and they said, Hey, you know, we really like you, but we’re, we’re having these problems here and you need to shore your academic performance up.

Otherwise you’re gonna have to be removed. And, you know, we’re, we’re trying to treat you kindly and we’re trying to help you out here. But, you know, we don’t know, you know, We don’t know if this is going to work out for you. But we want you to also know that we’re trying to help you save face. We don’t want to embarrass you or anything like that.

In fact, that principal was awesome. Um, the, the woman who was the head of the special education department in that district was great. In fact, the, uh, the lady became a neighbor of mine down the road. And, uh, a couple years down the road. And then the principal was by far the best principal I’d ever had in my life.

Um, in that same meeting, believe it or not, my mom came into that meeting and said, Absolutely not. If he’s not performing well, kick him out of office. And that’s how my mom was. She was very, was and is. Um, she was very, um, she wanted to ensure that I was going to be treated. Normal like everybody else and at that time in that moment.

I don’t want to be treated normally I wanted to be treated with right You know, my social life is on the line here that if I get removed from office that’s gonna be a lot of embarrassing situations for me to deal with, with my peers. The principal ultimately did keep me in office, and looking back as an adult you probably shouldn’t have, but at the same time I am very appreciative that he gave me another chance, and I was able to graduate with my peers.

I mean, I didn’t fall so far behind that I was in danger of not graduating or anything, but I did struggle enough to where there was a chance that at least I wouldn’t be able to participate in student body government anymore, but… I think I learned a lot from that experience, especially into my adulthood, that you can’t treat everybody the same, no matter what the definition of normal is, no matter what the definition of treating everybody the same, there’s so much diversity in the world that you don’t know, you know, what people are dealing with, you don’t know what their backgrounds are, you don’t know, What their feelings are, you have to take a lot of those things into account and consideration.

So, again, that’s not to say that you excuse bad behavior, or you excuse people who aren’t performing up to a certain level of expectation. But, I think we need to have more understanding of… What an individual situation may look like and not treat it like you’re grading it against a, an arbitrary rubric that everybody needs to be held to that same standard.

That’s nearly impossible to do in the first place. Um, as I moved into high school, similar situation in that, okay, now we’re going to an even bigger campus where, you know, we have getting kids from other junior high schools in, so then I had to meet new people. And, um, it was at that time and I know that You know, if you’re, if you’re parents of, uh, of teens, whether they have disabilities or not, you know what that’s, you know what that’s like.

Um, I would struggle a lot in high school, especially socially. So I was still very much struggling socially in high school. Doing my best. It got really challenging when… When a lot of my peers started getting their driver’s licenses and driving because I wasn’t there yet, and perhaps I wasn’t even mature enough to get there, but I didn’t have the resources at that point in time to even have that opportunity.

I didn’t have a car with the adaptive equipment in it. I needed to go somewhere who would, to a place that would, be able to train me on how to use those hand controls. Uh, I needed a car in the first place, which I didn’t have. So there, there were some things that I missed out on there. On top of that, there was dating.

And dating was very hard to deal with in that I was not able to participate in that. In fact, I only went to two dances the entire time I was in high school, and that was my senior formal and my senior prom. And my senior formal, I did go with a girl. And, um, uh, my parents rented a limo. And so I was able to go with her in that way, again, because I wasn’t able to drive.

And then I went to the formal, and I had my mom drop me off, but I didn’t go on a date or anything. Um, but I, I at least wanted to do that because that was my senior year. But high school was a challenge on its own, too. I, you know, I had pretty good teachers for the most part. I had a couple who were a bit challenging.

And I’m sure I was a bit of a challenge to them as well, in all fairness. Um, I did better academically, but I still wasn’t a spectacular student. And looking back now, you know, it’s one of those things that I regret that I didn’t do as well as I, I could’ve. And a lot of that was just because I was stubborn, and I was rebelling, and it just, I was being a teen.

I was being a teen with a disability. And, uh, again, that’s not what every teen goes through. It’s not what every teen with a disability goes through. So again, if you’re watching, I’m not trying to scare anybody there. Just telling you what my experience was. Um, I, I did get involved in athletics a little bit.

Uh, on my freshman year, I was the, Uh, student manager for the boys varsity team. And so I was there at all the games practices. As much as I could, at least. And then, my sophomore year, kind of interesting, Uh, I was able to be the, uh, manager, the student manager for the girls junior varsity team. I don’t know how that happened.

That was kind of a fluke, because they didn’t, as far as I know, they didn’t let any other boys be part of a girls team. Um, but I was able to do that, and that was kind of cool, again, because I’m around teenage girls, I’m a teenage boy, so hey. Uh, I did not object to that at all. And I knew all the girls. I mean, we, we were friends and, and you know, we were cool with each other, you know, nothing happened.

Um, but it was, it was fun and um, I’m not sure the coach was completely accepting of me at the time, but you know, she was in her early to mid twenties, so she was young too. She was a teacher on campus and I’ve seen her. Since then, you know, many years later, we’re, you know, we’re fine, but it was a different situation for all of us to, to get used to.

Uh, and then I, I graduated on time with my peers and, uh, was able to go across the stage. And I think that was a monumental moment in that looking back to, at least for my parents, looking back to, you know, where I came from in terms of my birth. Again, they were told that never walk it, never talk it, never make anything of myself.

And here I was graduating high school, so that was exciting for them. And then from there, I don’t know, do you want me to keep going in terms of education? Sure. Okay. Sure. Go ahead. Uh, from there, uh, I went to the junior college. Um, it was where I was able to get accepted first of all, and I’m still living at home.

And I was not thrilled about it again, because a lot of my peers were going off with scholarships to big universities away from home, and I, and I really wanted that, but I just, I didn’t have the, the tools. I didn’t have the academic tools. I didn’t have the social tools. I just, I wasn’t ready. But you know what, if we’re talking about God’s provision and God’s timing with things. I really think that was meant to be Because I was able to again stay at home and I met a professor at the junior college who was blind and He was blind from a condition that Didn’t really show up until he was in his late teens when he was about to go off to college And it turns out that he was the first blind student At that same college many, many years ago, and so he was one of my professors, uh, and he taught communications and he was a very good speaker.

And so he told me, he said, Hey, you’re in a wheelchair. That’s okay. You can learn how to communicate well. And then the wheelchair won’t matter. He goes, look at me, I’m blind, but I’ve, he traveled all over the world to speak. He appeared on Oprah. He appeared in front of the Pope. Um, he spoke to Nelson Mandela.

I mean, he, he was a celebrity in so many ways. Not world renowned in the way that everybody knew his name, uh, necessarily, but I don’t know if you’re familiar with the, the kindness movement. Uh, in the early nineties, uh, today, his, his, yeah, his quote was, today I will commit one random act of senseless kindness, will you?

So if you’ve heard that, that’s actually Dr. Chuck Wall, my, my old professor. And so, uh, it was really, really cool to learn from him. Um, in fact, he would. Stay after class a lot of days and his wife would come pick him up about an hour after you know We were all done and we’d sit in his office and he talked to me and he’d really give me encouragement he would give me life lessons and He really was one of the major influential players in 18 19 years old at the time and He’s the reason I think I’m on this podcast with you today because he’s the one who taught me How to have the courage to learn how to be a speaker, to learn to share my message, and to learn how to mentor and get other people to share their stories, so that we can create a stronger world, including people with disabilities.

Um, I can’t say enough about the man. Unfortunately, a couple years ago, he passed. He was in his 80s. But, uh, so he lived a long, full life, but I really wouldn’t be here had it not been for him. And, uh, I include him in a very small select group of people. My parents, my sister, uh, him, and maybe just a couple of others.

So he was very pivotal in my life. But from there, um, I was on the, what I call the lifetime plan at the junior college, because it seemed like I was going to be there forever. I was there about five years. Uh, four, four and a half, something like that. Yeah, and it’s a two year school, so, you know, I could have gotten there about two times.

Right, right.

Um, and again, it was adjusting to another type of education, it was going to different classes, going to a bigger campus, and now I was at the point where if I went to class or if I didn’t show up to class, nobody cared, because as long as the fee, the fees are paid, you can pass, you can fail.

Nobody’s going to hold you accountable to that. And so for me, it was great. I’m an adult. I’m going to do whatever I want to do. I learned some hard lessons there too. And again, I didn’t, I didn’t do so bad, but it took me longer, uh, than it probably should have, but again, I was just, I was learning and I was maturing and I finally got through it.

Um, as I was leaving though, as I was leaving the junior college. There was a point in time, now we’re around 2006, where I wasn’t feeling so well physically, and I didn’t know what it was, I didn’t know what was happening with me, I just knew that I was sick. And to just share a little bit of what that felt like, I would come home and…

I would just be tired all the time, I would be sick to my stomach, I couldn’t hold food down, I would go to the trash can or the bathroom and I would throw up. And this was happening daily for a few weeks. And now mind you, again, I’m in my early twenties, so I’m an adult now. And my mom, uh, my parents had divorced many, many years ago.

Before that, they divorced when I was about nine years old, but I maintained good relationships with, you know, my, my mom who was living with, my sister was living with, and my dad moved back to L. A. We were a couple hours from L. A. and he moved back down there and we, we had and still have a great relationship.

And, um, But at that time, my mom said, look, you’re an adult. You can take technically take care of yourself. And technically I can’t tell you what to do, but there’s something very wrong with you physically. And you need to go to the doctor and being a guy and being stubborn. I said, I’m fine. I’m fine, mom.

You know, don’t worry about it. I’m in school. I’m stressed out. I’m fine. Don’t worry about it. Well, she forced me to go to the doctor and she physically drove me to L. A. where my doctors were located. And she said, there’s something wrong with you. Let’s just get you checked out. So they did the blood work.

They did the, what I call the pat down test. You know, they just kind of pat you down and go, you’re fine, but we’ll take some blood. So they did a full blood panel. And about a week later or so, uh, I got a call from one of the doctors and they said, well, here’s the thing, you’re in full renal failure, which is another word for kidney.

Uh, your kidneys are shutting down and you have to go to the hospital today. And I went, oh, okay, well, and you know, that. That’s a showstopper right there. So I called my mom and she was at work and, uh, now by this time I was driving so I could really drive myself to the doctor or the hospital, but I called her and I said, Hey, um, I think I need you to come pick me up and take me to the doctor.

This is what they told me. And she goes, Oh my God. Okay, I’ll, I’ll be home. So she came home, picked me up, took me to the emergency room. They confirmed it. They said, you’re in renal failure. We have to start you on dialysis. You’re. You’re not doing well. I called my dad that night and I remember this day vividly and I know my parents do too.

I called my dad. I said, Dad, I’m not joking here. Um, I need you to come up because they’re telling me my kidneys are failing. I don’t know if you have to come get me and take me to L. A. or what, but we’ve got to do something. This is serious. So, without hesitation, he took off from work. He came and picked me up that night.

Uh, by midnight, 30 a. m. that next morning, we were in the hospital down in L. A. And, um, they were, they put me in a bed. They hooked me up to dialysis. And I was on a three year journey of dialysis, three days a week. While I was in school, about halfway through that three year period, I almost passed out on campus.

I just transferred to the university at this point in my hometown and almost passed out on campus. I went to my academic advisor and a couple of my professors and I said, look, I can’t. I want to keep doing this because I think this is helping me deal with what I’m dealing with physically. I can’t do this right now.

You know, I’ll try and come back to school, but I can’t, this is not what I need to focus on at this point. Let me tell you this moment is what helped me grow up and I was 23 This is the moment when I realized that you know what? Paralysis, the spina bifida, the hydrocephalus, the bowel and bladder issues that come with it The other things I was worried about that’s the moment when things became secondary Because there was a real chance that I may not make it I was one of the youngest people in my dialysis unit.

I was in my early 20s. I’m watching people in their 60s, 70s, and 80s, uh, not doing well. And in fact, um, kind of a spooky moment here. I’ll never forget this. Uh, Halloween 2007, I’m sitting there doing treatment, and I’m in school at the time, and I’m sitting there doing treatment that morning before class.

And a guy across from me, who was in his late 60s, dies right in front of me. And he had a heart attack. And everybody surrounded him. They’re giving him CPR. And the next thing I know, the ambulance is rushing in. They take him out, and I could see his faces. They let him out, and I knew he was gone. That scared me a lot.

And I told my parents, I said, I can’t keep doing this. I need a transplant. I need to do whatever I need to do to get the heck out of here. Because I’m not going to make it and, you know, during that time we had talked about, okay, transplant has to be the option. Uh, there was no doubt in our minds that my dad, uh, who had offered almost immediately that, hey, he was going to be my donor.

It just… You know, insurance and doctors. It takes a long time to get through that process of getting tested to make sure that we’re compatible, things of that nature. So it took a while. Um, but my dad was always committed that, Hey, I’m going to be the one to do this. You know, your mom’s taking care of you at home.

Your sister’s taking care of you at home. I’ll donate to you. And so we had some insurance battles. That’s a whole nother story. But, um. You know, he got tested and about three years after this journey started, a little less than three years, um, you know, we had the transplant. My dad gave me one of his kidneys, and that’s been 14 years ago, and we’re both doing well.

Um, he had to stop smoking. He was a, he was a smoker at the time, so he stopped. He hasn’t smoked since. Um, I’m healthy, you know, gained some weight, but that’s because of the medications, and unfortunately, that’s an unfortunate side effect, um, but I’m alive, and so it’s really neat, and this is what I tell people, my mom gave birth to me.

And my dad gave me a second chance. So it’s not every day that you have both parents who have an opportunity to, to do something for you that, you know, you know, helps you get, you know, gives birth to you and gives you like a second birth almost. Right. And, uh, I don’t take that for granted. You know, it was 14 years ago, um, in March of this year.

Wow. And since then, you know, I’ve done a lot, uh, you know, I’m talking a lot, so I, you know, I’ll let you, let you ask any follow-up questions you have.

Let’s just, again, so, well, just, just the end of the story there, just to kind of clarify that. So is renal failure, does it go along with spina bifida or was this just a fluke that, that you were facing that in addition to it?

No, that’s a good question. It, so it, it can, it can go to spina bifida. And the only reason I say that is because, you know, one of the challenges that I, I’ve had, and still have it to a lesser extent, is that the, the bladder and bowels, and of course the bladders connected to the kidneys, um, are impacted with spina bifida.

Now, to varying degrees, because there are some people walking around, I mean, you might have spina bifida, you don’t know. Uh, and so you go to the doctor and they find something. In fact, I’ve known a couple of people who are walking and talking around, you know, living life. They go to the doctor for a physical, for a job or something.

And I know one girl my mom actually worked with. And they found a spot on the, uh, exam on her x ray, I think it was an x ray, or, uh, no, maybe it was like an MRI or something. And they said, hey, have you ever been diagnosed with spina bifida? And she says, no, I don’t even know what that is. Well, she had it her entire life, and she didn’t find out if she was around 19 or 20 years old.

So, in my case, it was obvious, and if you see me, you know, I’m in a chair, you know, there, you know there’s something there. Um, but there are people who are walking around today. Who don’t even know they have it. So in my case, we always knew that my kidneys. We’re not working, um, you know, to the best of, to the best function that it could have.

So before any of this was happening, because you’re talking about bladder and bowel issues can go with spina bifida depending on, on the individual. Um, so I would assume that that would include like urinary tract infections throughout your life that you’d be facing.

Oh yes. Oh yes, yeah. Chronic UTIs. I still get them. I don’t get them as much, and I’m able to handle them a little bit better. I do a couple things. I do a, like a daily bladder flush to help. Um, that’s not something I learned until just… You know, a couple years ago, unfortunately. Um, but that’s, we don’t know if that was a, a cause for the, the renal failure.

But I’m sure it was a contributing factor because I was getting them left and right. It was, it was almost as if I’d get one, we’d cure it through antibiotic treatment, and then I’d get another one immediately. So, it was just a constant cycle of those.

So that’s, because my thought is that that may be, at least the UTIs may be something that our parents that are listening may be familiar with already if they have an older child with us and just maybe staying on top of things to make sure that the child’s learning how to care for themselves. And knowing what the signs are for that as well.

Yeah, no, if I could just give a few suggestions, and again, this is not medical advice, I’m not a doctor. If you avoid sugar as much as possible, and I know, especially in today’s age, you can’t avoid sugar in everything because there’s a sugar, there’s sugar in a lot of things, if not most things.

Avoid sugar, drink a lot of water, and even my parents are pretty impressed these days. They go, man, you drink a lot of water. Well, I have to. I have to keep the bladder healthy. And especially now after transplant, I want to keep this thing as healthy as possible.

Be as clean as possible when you use the restroom, if you, especially if you use an intermittent catheter schedule, which I do and always have. Uh, and I think that’s what, you know, was a major problem with the UTI. So I always, I always wear gloves. I always use a new clean catheter. For years, I always washed them.

And just try and be as healthy as possible. It, it’s, it’s not a perfect system. I still get UTIs. I do all of that. And I still get UTIs. But they’re less frequent. And, uh, look into bladder flushes as well. And I won’t go into all that, but talk to your doctor about that, as that may be of help.

Good. So it’s, it’s always nice whenever someone’s willing to share maybe the, the not so fun part of having to deal with things.

But I think it’s important that our parents hear this because, you know, again, we’re trying to, to give you ideas of what to ask, what to look for, how, how to help your child become more independent as they get older. This is, this is part of life for a lot, a lot of kids that are growing up right now.

One of the best blessings that I’ve had in my life is that my parents, and my younger sister, I give her credit too, who, she does not have a disability by the way, um, they’ve all helped me and pushed me, and many times too, to be independent.

So, there were times where, you know, Mom, Dad, can you call the doctor? And they said, no, you can though. You know, here’s the phone, or, you know, here’s… Here’s what you say. Here’s what you ask. And, uh, you know, here you go, do it. And it, that was such a blessing for me because that allowed me to grow up and to learn how to handle it myself.

And I know there are a lot of parents out there who are reluctant to do that simply because It’s scary, not only for them to deal with their own child’s health, but to, oh wow, you want me to turn my child’s health over to their own, you know, responsibility? Yeah, if they’re capable of doing it, I think it’s important because you’re not always going to be around.

They need to learn to fend for themselves. Now, I realize that may not be possible for everybody, but I believe that whatever the child is capable of doing, with or without additional assistance, they need to be able to learn to be able to handle some of those things on their own. And that’s, that’s been pivotal in my life. In, in several areas, not just in this case.

I’ve shared the age that my kids are now, but we’ve gone through that process of walking them through, you know, practicing the, the dialogue before they make the call so that they know how to make those appointments, how to. How to set that up. We’re still there. We’re, we’re usually still in the background on speakerphone just in case we need to kind of jump in and give them something else to say.

But, um, but parents, I think that that’s, that’s a great skill that you can pass on to your children as early as they’re able to take part of that. Let them, um, drive those questions, drive, you know, have them maybe make their checklist of questions that they want to ask whenever they’re in the appointment, even though.

Thank you. They may be young and you’re there with them so that they can start learning how to do this. There’s so many areas of advocating for your own needs. And this is one that we don’t talk about much. We, we, we, we talk about with your teachers and with work. But, um, but it’s, it’s, it’s everything. You need to be able to understand what you need and how to get the, the help and how to be able to communicate what your, what your symptoms are, what your questions are.

So that you have that relationship with your, your, uh, medical. Team as well. So thank, thank you for encouraging that. Um, I do want to go back when you were talking about, um, your experiences growing up, you have to say you had a very good social life, um, because you had a lot of experiences starting early and all the way through high school, more than what.

You know, our, our, our typical kids have at times if they’re just shy kids. Um, so I was impressed with that, that, that you didn’t let your mobility stop you from getting involved. Um, but you also talked about sports. Now you, you were in high school, you said that you were, um. Well, going back a little bit, you said in, in, in elementary you would, you would shoot basketball with your friends or, or try, ’cause the, the hoop was pretty high for that , but, um, but then in, in high school, you mentioned that you were helping with the two teams, but what sport was that? Was that, was that basketball as well or was that another sport?

Yeah. My, so my freshman year I was the Varsity boys. I was a student manager. And then the, my sophomore year, I was the girl’s junior varsity, uh, manager.

Okay. And then I saw in your bio that you have worked with, with you sports. Tell me more about that. What have you done since high school now with sports?

Yeah, I have one thing I will mention because this was, this was key in my life too, um, we haven’t talked about this yet. Uh, but for years, uh, close to 20 years, I also played wheelchair basketball. And so there was a local adult team here.

And, uh, I started when I was about six years old. I didn’t play a whole lot for a couple years because they were all much older than me. And they were out there hitting each other and falling out of their chair. And for a six-year-old, it’s pretty intimidating, especially when they’re much bigger than you.

Um, but they were, they were really my first friends when I moved to my, my current town, my hometown, uh, from L. A. And they really showed me what it was like to grow up with a disability. They taught me so much. Um, and so I played for, with them for a long time, just, just casually one day a week. Um, but they really taught me every skill that it took to play wheelchair basketball.

And that really. was my first exposure to not just sitting on the sidelines and watching, or watching on TV. You know, I’m a huge Lakers fan. I grew up watching the Showtime Lakers in the, in the mid to late 80s. Um, but the Rolling Chariots, that was the name of the wheelchair team, they were able to get me out there on the floor and really play for the first time, uh, with, in a way that I was capable of playing with peers, even though they were, again, much older than me.

But, um, But yes, the, the sport that you’re talking about or the experience you’re talking about was my first job out of college. I was hired as the executive director for a youth sports league for kids with disabilities. Uh, and they were, they were primarily, um, disabilities that encompassed, um, Down syndrome, autism.

Things of that nature, but I was, it was exciting for me because I was able to go in there with a background and passion for sports and then having actually studied business and sports management in college, I was able to go in there right away and say, okay, I’m taking what not only is my passion, but what I know in business related to sports and run this organization.

And one of the main projects I was able to achieve at that time was to develop relationships with the local recreation and parks department. And we were able to build one of the first fully accessible baseball fields in the state of California. And that was in 2012. It took a couple of years. Uh, but we were able to do it.

Was that part of the Miracle League program, or was it another organization that you were, or was it just for that Parks and Rec program?

No, no, no. Yeah, so no, it wasn’t a Parks and Rec program. Uh, it was called the League of Dreams, and it’s still in existence. Um, but it’s not affiliated with the Special Olympics.

It’s not affiliated with any other league. It’s its own independent league. And so it pairs up people who are able-bodied, and it’s, we, we tried not to use parents because we wanted the parents And, and the siblings and their families to sit in the stands to be able to have that opportunity to chair, to chair on their kids.

Because most of the time, especially with these particular kids, the parents were always hands on from getting up in the morning until they went to bed and everything in between. They didn’t have a chance to sit back and see their kids doing something. So we always called for volunteers from the community to come out.

And of course we’d do background checks and things like that. And we would pair them up with the kids so they could go out there and play. And then the families would sit in the stands and just have a good time and watch their kids and cheer them on. So it was a great experience for me. And again, that was my first job out of college was being the director of this program.

How long, how long did you work with the, with the, the sports program?

I was there about a year and a half. Now during that time, I was also, so the league was started by a physical therapist in town and he had several locations.

So he was, he was. Quite a large company, at least for our area. And so not only was I the director for the nonprofit, I was also his executive assistant. I was also working in marketing and at one point I was also, um, doing a lot of the, uh, equipment ordering, uh, things like that. So I, I was holding down what it felt like two or three different jobs, uh, as the purchasing agent and marketing his assistant and running the league at the same time.

So it was very busy. And so there came a point where I went and I sat down with the CEO of the company and I said, look, this is too much. I love the sports league, but I think I need to take my career in a different direction. I think, I think I’ve helped set things up in such a way that you guys had this, this field project, this baseball field project that had been sitting there for about three years that I was able to complete for you.

Now I think I need to focus on the business part of it. So I stepped away from the league. focused more on the business side of things with him and the for profit company, the physical therapy part of the company. And then from there I was able to launch my career into other areas.

I’m looking at our time. We probably need to wrap up soon, but I did want to ask you, um, do you have any advice that you want to pass on to parents if they have a child with spina bifida or if they have a child who has a mobility challenge? Um, any, any tips, tricks, anything you, you want to pass on to them?

Yeah. So first and foremost, I would say, and we kind of mentioned it earlier. Get your kids involved in their own life and in their own care. It’s okay, you know, when they’re so young, you know, mom and dad have to take care of everything. But at a certain point, even five, six years old, still pretty young, but start getting them involved with certain things.

Ask them questions. Have them repeat answers that you would expect them to give when it comes to their own care. Know what medications they’re taking, when they have to take them, why that’s important. They don’t have to know all the medical background and details, but they have to know that what they’re doing or why that’s important, in simple terms.

And as they get older, provide more opportunities for independence for them. For instance, uh, my parents set up in, in our kitchen. This is an easy example I can think of. Uh, you know, most, in most kitchens you have all the plates and cups and everything up high. Well, even as an adult, I can’t reach that. So early on, I told my parents, I said, let’s set some things down low for me, even just a few plates, a few cups, you know, things like that, just so they’re mine and I can reach them and I can, you know, get a drink whenever I need to get a drink, you know, or something to eat or whatever.

And so we did that. And then, you know, it grew to where then I had my own set of everything. And then they taught me, okay, well now you have to wash your own dishes. You have to put your own dishes in the dishwasher. And here’s how you do laundry. You have to separate the lights and the darks. And, you know, here’s how you get into a shower chair, you know, to take a shower.

Here’s how you dress yourself. So it was very interactive for a long time. So I grew up with a younger sister. So. You know, we always had our own chores that we could do. Now I couldn’t. I couldn’t do some things like go out and mow the lawn, not to say we didn’t try, uh, in fact, and this is a story my dad and I talk about every once in a while to this day.

We had our little miniature schnauzers way back, you know, when, when I was five, six years old, and there was one day and my dad said, hey bud, come over here, let’s, let’s just try this just for, you know, for kicks, see if it works. So he hooked me up to the lawnmower, just a push lawnmower, and he put the dog leash around my chair and he hooked it up to the lawnmower, and it, it, it didn’t work, you know, the, the, the leash was not strong enough to hold me onto the lawnmower, um, but we tried.

You know, we at least made that attempt to say, Hey, can Nathan mow the lawn? Um, so it was, it was things like that that I couldn’t do, but there were plenty of other things that we found out that I could do and so, you know, living on my own now it’s, you know, I have a gardener, I have to hire a gardener because I can’t go out there and do that, but I’m able to do all these other things and it started from that time in my life and it’s not to say that it wasn’t frustrating.

For both my parents and me, there was, there was a lot of tears, a lot of tears back then. Um, but I’m so glad that we went through that because I wouldn’t be here doing what I’m able to do today. It all started with those fundamentals. I wouldn’t even be here on this podcast with you.

Um, you know, as parents, we have to think outside the box a lot of times. Um, it sounds like your, your dad was one who was, was good at thinking outside the box.

Yeah. And he still is. He, every once in a while, he’ll come up to me and say, buddy, hey, you know, what do you think? I mean, even now, even the last six months, he, he’s, he’s, he’s, he’s Came up to me, he’s come up to visit me in my house and, and, uh, and he’ll say, Hey, you know, what do you think about this?

Why don’t we try and figure out this way or that way? And I’ll go, Oh, okay. Um, something to think about. And sometimes in my mind, I don’t know if it’s going to work, but, uh, I said, okay, you know, let’s just try it. Maybe I’ll be surprised. And sometimes it works and sometimes it doesn’t. But you know, it’s good that we’re.

We’re always trying to figure things out and same thing with my mom, you know I don’t see my mom as often because she lives out of state, but I talk to her every week But when she comes and visits or I go visit her, it’s the same thing. How can we make things work? Maybe a little bit different, you know for me, but how can we make them successful, you know.

Before we finish, um, can you share with us what you’re doing today? What, um, what, what are any projects you have going on? Anything, anything like that?

Yeah. So I am very involved in my community. Um, I’ve been the ADA coordinator for my community, in fact.

Uh, so I’ve learned a lot about the Americans with Disabilities Act. I’ve, I’ve received phone calls from, from people in the community asking questions on, you know, how do we deal with certain situations. Um, aside from that, uh, I’m also starting my own company. Well, in all fairness, I’ve been trying to start my own company for a while.

Uh, it’s called Real Life Speaking or Real Life Coaching. That’s kind of all-in-one encompassing. And so what I like to do is… First of all, I love speaking in front of people, but number two, I like helping either small groups of people or just one-on-one and I’m really focused on helping families and individuals with mobility disabilities and spina bifida and spinal cord injuries who have been or who are where I have been, you know, maybe they’re, maybe they’re young kids and their parents don’t know where to go or where to seek information. And so based upon the experiences I’ve had and the information I’ve gathered from other people, I’m putting coaching programs together to offer these, these families.

Uh, it could be somebody who is a young adult or maybe an older adult even who, you know, suffered a, a tragic, uh, illness or an accident of some sort that put them in a wheelchair. And so maybe they’re having to relearn a lot of things. So, how do they do that? You know, there aren’t a lot of resources out there on organizing the different pieces of information out there.

There’s a ton of information out there, but the information is in so many different places that it can get very confusing and very intimidating on Where do I start? I mean, I, I could Google a bunch of things. I could go to YouTube and look at a bunch of things, but how do I make it work for me? And that’s where my business comes into play.

I want to simplify that information and help them create a plan that works just for them. And it’s not a one size fits all solution because let’s say I’m coaching you. But what works for you may not work for me and vice versa. So, I want to focus on the individual or the family and help them figure out what their barriers are, where their opportunities are, and help them put that plan together to help them become successful.

It sounds, sounds great. Um, and some of our listeners may want to get in touch with you and find out more about that. What’s the best way that they can get in touch with you?

So I have a website and it’s wheellifecoaching.com. So wheel like wheelchair life coaching dot com. And that’s two LSS one L in wheel, one wheel, uh, one L in life wheel life coaching.com.

Uh, and then on Instagram, you can find me at Wheel Life again, two L. Underscore coach. And that’s my handle for Instagram @wheellife_coach.

Okay. And we will put those links in the show notes. So if you’re listening, look, look on Apple or wherever you are, or in the description, if you’re on the video, um, to see, to see those links so they can. Can, can get in touch with you. Thank you so much for spending the time to answer my questions and, um, and to share more of what you’re doing and what your experience has been.

Yeah. Thank you so much for having me. This has been great.

The post Episode #73: Navigating Mobility Challenges: From Childhood to Coaching appeared first on Water Prairie.

Show Notes:

Find the full directory at waterprairie.com/listen.

Have you ever heard of spina bifida? In this week’s edition of the Water Prairie Chronicles, we’re talking with Melissa Ortiz, Senior Advisor for Able Americans. She’s sharing her story of living with a disability and how she has become a voice for others facing similar challenges. Join us as we hear about Melissa’s journey and gain insight into the power of advocating for yourself and your community.

In this interview, Melissa, who has spina bifida, shares her personal journey and insights into living with the condition. The discussion covers various aspects of her life, from childhood challenges to her experiences as an adult. Melissa emphasizes the importance of understanding and educating oneself about spina bifida. She highlights that individuals who face difficulties in school can often become exceptional teachers due to their unique perspectives. Drawing parallels with historical figures like Albert Einstein and C.S. Lewis, Melissa discusses how those who perceive the world differently can excel in their fields.

Melissa delves into her professional life, detailing how spina bifida has influenced her career. She speaks about the common health issues associated with the condition, such as bladder infections, which can pose serious risks. Melissa shares her personal struggles with health challenges, and she offers advice to individuals diagnosed with spina bifida, urging them to join support groups for a sense of belonging and guidance. For parents of children with spina bifida, Melissa advises seeking advice only from those who have firsthand experience with the condition.

The conversation also touches upon workplace accommodations and the importance of ensuring accessibility. Melissa emphasizes the significance of understanding the Americans with Disabilities Act (ADA) requirements and encourages individuals to advocate for their needs. She discusses her involvement in a project to create an app that will help people find resources related to their specific disability needs within their local areas.

Overall, Melissa’s interview provides valuable insights into the challenges, triumphs, and strategies associated with living with spina bifida. Her candid discussions and advice offer guidance and support for individuals facing similar circumstances and shed light on the importance of awareness and inclusion.

*******************

Connect with Melissa:

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Melissa Ortiz serves the National Center for Public Policy Research as the organization’s Senior Advisor for the Able Americans Project.

In her role, she develops the project’s strategic plan, marshals key resources and helps oversee the implementation of the project. She also assists the National Center’s president in identifying necessary contractors, employees, strategic partners, stakeholders and donors and serves as a key spokesperson.

Melissa identifies as a “happy warrior” and is enthusiastic about driving a dialogue between people living with disabilities or chronic illness and policy makers across the political spectrum, especially conservatives. She has worked in the classroom in Nashville, Tennessee and in the nonprofit sector in New York City and Washington, DC. She was honored to serve as President Trump’s Commissioner of the Administration on Disabilities. The first female board member of The Conservative Caucus, one of the oldest conservative groups in existence, she currently resides in Washington, D.C. with her husband Tony and Service Dog Dachshund, Annie Oakley.

Full Transcript of Interview:

Tonya: Welcome everyone. We appreciate you joining us for this episode of the Water Prairie Chronicles. I have a guest with me today who I have been looking forward to meeting a long time and introducing you to. We actually met several months back, maybe even more than several months back, um, and had so much fun talking that we never even recorded. We were, we were enjoying our time together so much. So today we promised that we would hit record so that we could share this, this part of it with you.

So, so Melissa Ortiz is with us. She is the senior advisor for ABLE Americans. ABLE Americans is a program created to support Americans living with intellectual developmental and physical disabilities, and they also create policy to support them. So Melissa, welcome to Water Prairie.

Melissa: Thank you. Thank you for having me.

I, um, know we’re, we’re going to get into, um, the topic today. We’re actually going to go back, way back into her childhood and, and pull out, pull out some stories there. But before we get into that, this season, I’ve been asking each of my guests to prepare three facts or pseudo-facts to share with you. And, um, so audience you’re listening.

To hear which of the three things that she shares are going to be true and which one you think is the lie. There will be one lie hidden in the group. And this is the game of two truths and a lie. If you’ve played it in youth group or somewhere along the way, you may have, may have come across it. Um, but Melissa, do you have your facts or pseudo-facts ready to share with us?

I do. I do.

What do you have?

Okay. I am a Gilmore Girls aficionado. I sat next to Britain’s Prince Edward at a state dinner. And I’m semi-fluent in Hebrew.

All right, listeners, go to the comments if you’re watching YouTube and write your guess there. If you are not watching YouTube or want to wait to do this, listen to the end of the podcast and then go to either Instagram or Twitter and find the post that matches this episode and put your guess there.

And a week after we post it, we’ll post the answer so you can come back and check to see if you got it right or not. And if you are guessing, I’d like to know how many you’ve gotten right so far. So, so leave, leave us a comment on it. So Melissa, today we’re going to be talking about a topic that I have not been able to bring to the podcast yet, and that is the topic of spina bifida.

Um, so you have a personal journey with this and, um, so I’m going to, I want to start Just because for me, I am not that familiar with it, and I’m sure we have some listeners who aren’t. Um, can you give us just a general description of what Spina Bifida is and how it might be different for different people?

Sure. There’s Spina Bifida, and then there’s Spina Bifida Occulta. Which, there’s the first type of spina bifida. What spina bifida is, is a defect in the neural tube. In other words, the whole brain and spinal cord network. That is the neural tube. And so, it, when you have regular spina bifida, it usually presents with the spinal cord being outside the spinal column and sometimes outside the skin at birth or barely covered with skin.

It usually often presents with hydrocephalus so that the baby needs a shunt. Or, you can be like me and be misdiagnosed as having Cerebral Palsy and have Spina Bifida Occulta that they did, I did not, did not receive an official diagnosis of having Spina Bifida Occulta until I was over 40 years old and living in D. C. I was 42 years old when they finally diagnosed it. So, I grew up thinking I had cerebral palsy, but the more research that I did, the more I knew that that was just not the right diagnosis. And we also did not figure out until I was an adult that I had hydrocephalus. Uh, I, everybody always talked about my head being big, too big for my body and that, and I, and I would joke and say, well, that’s fine.

Jackie Kennedy Onassis had the same problem and she always looked great in pictures. So maybe that means I photograph well, uh, my mouth has been a huge blessing. My quick tongue has been a huge blessing, but also a huge curse growing up. But getting back to the spina bifida, it is, it can cause anything from a limp to quadriplegia with being paralyzed and for all four limbs. For me, because it was not obvious, we never, and even the cerebral palsy diagnosis was not labeled, not put on me as a label until I was about six. And starting school and needing services and, um working with the March of Dimes as a poster child and all those things and so you sort of have to have some sort of diagnosis. And so that is, that’s how that goes.

Growing up not being like everybody else was very interesting. It, um, I, the, you know, again, thinking I had one disability and then finding out it was quite another has, was very shocking as an adult. Uh, but as a child, I just knew that I wasn’t included in everything that everybody else did. Um, I was not a nice child.

I, we had these humongous holly bushes in our front yard and I used to sit inside the holly bush and throw berries at people when they walked by. Like I said, I was not a nice child. I got my share of spankings and I’m deeply grateful that my parents, you know, disciplined me because I would be impossible now.

My husband’s not home yet to tell you just how impossible I already am, but I’m grateful that my parents made the decision early on to raise me just like they’d raised their other daughter, have expectations, and there were things that they didn’t know that I wasn’t supposed to be able to do that I learned how to do. So that was pretty exciting.

So let me, let me go back. So we have spina bifida and we have spina bifida. What is the third word?

Occulta.

Okay.

It’s O C C U L T A. And it means hidden. In other words, it’s inside, the malformation is inside.

That’s what I was going to ask. Okay, so, so is it more in the brain? Or is it just that it doesn’t protrude?

It can be in the lumbar, where the, where the tube didn’t close all the way, but the bone in the skin closed around it. Or it can be in the neck.

Okay.

And mine, my malformation is where my brain stem and my brain and my spine, or my spinal cord all come together. And it really does look like a golf ball sitting on a tee.

And it presses, there’s a valve that’s a corkscrew in shape, um, that controls the fluid between the head and the spine. The cerebral spinal fluid. And I at any given time either have too much fluid in my head or not enough. So I can’t have a shunt because I don’t remanufacture fast enough. I had meningococcal disease as a baby, and it makes perfect sense that I have spina bifida because I had meningococcal disease.

It’s a form of meningitis that you can, you can go to sleep perfectly fine, just kind of sniffly and just not wake up. Um, My mother caught me before I went to sleep and they were able to treat it. I was about nine months old and then I had I’ve had bacterial meningitis in high school, and then I had viral meningitis twice when I was teaching school, and it was, it, you know, and it all makes, and somebody said how could you possibly have got meningitis so many times, but when you understand it from a spina bifida perspective, the valves and the meninges are not formed properly, so they can’t do their job, and so they get inflamed.

Um, I always know, part of, part of my service dog’s job is to tell me when there’s too much pressure in my head. It’s something my chemical smell changes and she can tell me. But I also have gotten to start to feel it. I, I have a petite mal seizure often when that happens. And I start to feel like somebody is taking my head and shoving me underwater against my will.

Um, I can hear everything that’s going on around me but I can’t respond. And if you’re not prepared for it, it can be very disconcerting because I just stopped talking.

Now is that because of the hydrocephalus?

Yes.

Is that the part that causes that? Okay.

Yes. And it’s not the spina bifida part, it’s the hydrocephalus part.

Right. Now, My next question for you was going to be what it was like growing up with Spina Bifida, but you didn’t grow up with Spina Bifida because you didn’t know that’s what you had. Right, right. But you did mention that. Yeah. Yeah, I was going to say, you did mention that, um, they thought it was cerebral palsy, but not until you were older. So when you were an infant, were there any signs of anything going on?

Yes, I didn’t sit up. I didn’t, um, my movements were awkward. I had no balance. I didn’t walk until I was almost four. And then, and I wore the little short leg braces, um, with the white high-top shoes. Uh, and you haven’t, I, I, it always amazes me how cruel kids can be to each other.

You haven’t lived until you’ve been in four-year-old kindergarten at your uncle’s Baptist church and the whole class is standing around you chanting, baby shoes, baby shoes. Because I had the white high-top shoes on with my braces as a four-year-old. And, and that, that’s just, I don’t think, it’s cruel, but it’s also, it comes out of ignorance.

And, growing up with a disability, growing up different in any way is so difficult for a child. Whatever it is that separates you from The from your classmates as being different can be very difficult and then I had the added Um, I know that we’re going to get into this and one thing I do want to circle back very quickly and say that Not everybody who has hydrocephalus either, so that’s a very important distinction I want to make.

I have a great friend who has spina bifida, and hers was so slight that you would never know it. You would think she had sprained her ankle. Um, and she has no other evidence of it at all. But, I was born in 1966, and in that time period, In the South, if you had a child with a disability, most often they were institutionalized. And my parents were having none of it. And my mother made a very brave decision in upper middle class, white gloves and party manners Atlanta, that I was going to participate in everything else my peer group did.

And didn’t always make everybody happy and it wasn’t always fun. But I’m deeply grateful that she did that. My father died when I was five. So that’s why you’ll hear me talk about my mom raising me. Um, he was heartbroken by the disability, but he also, he loved me unconditionally. And I do know that, um, that was, that’s been made very clear to me throughout my life.

My mother was an amazing role model because “I can’t” was not an option. Uh, my nickname is the Queen of Creative Alternative. And it wasn’t meant as a compliment when it was plastered on me, but it has served me incredibly well in getting things done in life. Yep. And so that is, that’s that. Therapy, therapy, therapy, therapy.

Physical therapy, physical therapy, physical therapy. Other kids got to go to the beach all summer. I went to physical therapy five days a week during the summer because mom didn’t want me doing it during school because she didn’t want me to miss anything. Uh, I come from a long line of teachers.

Uh, my, I was a teacher, my mother was a teacher, my grandmother was a teacher, my great-grandmother was a teacher, and my great great grandfather was a teacher. And I think his father was also a teacher. So, I mean, that’s six generations. So, that, that’s a nice way of saying that I come from a very long line of bossy people.

And, and, but at the same time, I also come from a very long line of people who value learning. And my mom’s mom, when she realized that I maybe had a little more going on in the brain than other three-year-olds did, she taught me to read. And it was the best thing and the worst thing she could have done.

Reading has been such a, an escape for me, but it has also been, when I started first grade and I was reading on an eighth-grade level, my teacher wasn’t real thrilled when they showed up with this kid that wanted to check out Chitty Chitty Bang Bang and then proceeded to read it aloud during story time. Not what she had planned.

No. Now you mentioned that you have an older sister. Um, what, well, you had mentioned that you had a sister. I’m assuming that she was an older sister. Um, can you, can you describe like what it was like growing up having a disability and, um, you know, having a sister around, um, sounds like from what you said when you were five, it was just, just the three of you or were there other siblings too?

After, after my dad died, it was just the three of us. So my sister was nine and a half when I was born, closer to, closer to ten. She decided very quickly, my mother was very, very sick when, um, she was pregnant with me.

And she was, actually, they tried to convince her to have a DNC because she was placenta previa and hemorrhaging. And my parents were not Christians at that point, but they just made a decision that they were going to have a baby. And They had been trying for five years to have me and so my mom went to bed and finally at what they could kind of calculate because my parents had been apart the summer that my mother got pregnant, she was away in graduate school.

So there were only minimal, you know, minimal number of times that they could pinpoint. So when they could pinpoint the kind of the end of the seventh month, they just told my mom, they said, we have to take this baby right now or you’re going to die. The baby’s not going to make it. We can’t find a heartbeat.

So, my sister, who is very athletic and very, um, She’s an Olympic caliber equestrian and she now has her own stables where she trains young riders. She is, um, one of the strongest women I know. And all of a sudden, She went from being the only child to her mother being in the hospital with the little upstart that was coming.

The little upstart coming early so nobody was prepared and when they brought me home I lived in a turkey box for three months because there was no bassinet. And my mother had to have, my father was a meat, a meat packer, and meat salesman so that’s why we had the turkey boxes.

Okay, I was going to ask but…

Yeah, exactly, so I better give some context on that. And… They, you know, she, I, you know, as I grew up, and after I became an adult, I suddenly understood her perspective. I would not have really taken a great liking to me either if I had been in her shoes because her mom was in the hospital for six weeks before, you know, I was born.

I was born, mom has to have, yeah, mom has to have a hysterectomy, a cesarean section and a hysterectomy to save her life. I live, and I come home, and I’m barely four and a half pounds, and I have all these needs. So she, um, she kind of got shoved to the side, and I became the center of all family dynamics.

And that is the way I’ve seen so many families, and I have such a heart for siblings of disabled children. Because they get shoved aside, and it’s not to be mean. Uh, it is… It’s, it’s out of necessity and it takes a very wise parent to see that, that, that non-disabled child’s need, child’s need and balance it with the disabled child’s needs.

Right. Right. Um, I want to make a little note here, um, for our listeners, Melissa and I are going to talk again about, specifically about siblings and, um, parenting more than one child. So, um, So, watch in a couple of weeks after this one comes out, we’re going to have that one as well. So, um, so that was actually a good, good little, um, plug for, for, for, for our next episode with you.

Um, but let’s, let’s go on to, um, I’m thinking, so you, you had the needs early, but they weren’t really identified as anything specific, it sounds like.

Exactly.

And then you’re probably getting into school about the time that you got the, the wrong diagnosis.

Yes. Yes, and I started first grade in a wheelchair. Uh, and…

Okay, this wasn’t asked, what your mobility was.

Surgery, yeah. I had surgery. I was on crutches with little short leg braces before that. And then I had surgery the summer before, um, first grade. I started first grade in a wheelchair. I, after spending the summer in plaster from the hips down with a bar between my knees and a bar between my ankles, I looked like a triangle.

I try to find celebration and excitement in even the most mundane things. Living with Spina Bifida and having to make daily accommodations, if I don’t celebrate it, Some days it gets so frustrating that I just want to bang my head against something really solid until I have a nice big goose egg.

Yeah. So you had, so you had the surgery, you started school, you’re in the wheelchair. Did you remain in a wheelchair after that point or did you regain mobility?

I stayed in the wheelchair for the first half of the school year and then, I started, I went back to the crutches and the braces, and then by the end of the school year, I was able to be without the, without the braces, but I used the crutches all through that year, and then by the next school year, I had, I was just mobile.

I had bad balance, and I walked with my hands out. Um, I, um, I asked at one point, I said, why didn’t everybody, anybody ever have the idea of having me carry an umbrella, because that would have kept my arms close to my body while maintaining my balance. And this physical therapist looked at me and said, I’d never, I never thought about that. I said, well that’s what tightrope walkers do. Yeah. And she said, no, tightropers hold their umbrella out like that. I said, well that would have been kind of cool.

You probably, from what you’ve described, you probably would have enjoyed that.

Absolutely, and the, you know, going back to being in first grade in a wheelchair, they wanted to put me in the special education classroom.

And my mother, my dad had died by this point and my mother said absolutely not, her brain is fine. Um, and she went and talked to the first-grade teacher that I had been assigned to and the first-grade teacher said, I am perfectly fine with having her in the classroom as she is. Uh, we lived right across the street from the school.

So if there was any emergency, my mother could come and handle it. Or somebody that I knew and trusted could come and handle it. Well, um, what they didn’t count on was the game that my classmates would make out of sending me home at the end of the day. Take her to the top of the hill and hit, and let go.

She’ll make it home. You know, there was a retaining wall at the end of the driveway. I didn’t always stay in the wheelchair when I hit the retaining wall. So I had to learn to wear a sash around my… Around my waist in the chair. So that didn’t fall outta the chair.

Did you want them to push you down to your home?

I loved that. It made me feel included. I felt included and I felt like we were playing. Um, I have since talked to some of those classmates and they were like, well, we just wanted to see what would happen if we did that. As an adult, it’s really funny as an adult, you look back on some of the things that you did as a child and you sort of think to yourself, that was really not very nice, or not very helpful. But it was really entertaining.

Well, at least they’re, they’re honest. That was, that was what it, what it was. And, and like you said, you, you like feeling included, but I’m thinking that retaining wall, there’s got to be a story behind that for you to have mentioned that.

We made our garage into a den and so, and put a, and laid sod in front of it and put a retaining wall at the end of the driveway so that.

We wouldn’t drive, so that my mom wouldn’t drive off the driveway into the grass, or my dad wouldn’t drive off the driveway into the grass. And, um, my sister, as I said, she was an Olympic-caliber equestrian. And she used to put me on the retaining wall and practice jumping over me.

Wow.

Yeah. Yeah. Yeah.

So, um, I’m assuming that you were pretty fearless as a child.

Very much so. And I was very … How do I put this? I always had a reason for everything I did. And it wasn’t because I wanted to. It was always, well, I thought this was a better idea. Hence the Queen of Creative Alternative. Um, Right. There’s a documentary that just came out on, um, Amazon called Shiny Happy People.

And it’s about the Duggar family and about a man named Bill Gothard and the cult that he started. And my mother was very drawn into that in the early 70s when I, right after my dad died. And so, I endured a lot of spanking to get the rebelliousness and the refusal to obey out of me. And, Mom hasn’t ever said this, but other people, like my, I have a best friend that I’ve had since we were three and her mom actually said to me one day, she said, you know, as you grew up, I realized that it wasn’t that you were disobedient, you were trying to think of the most efficient way for you to get it done, for you to have the energy and to get done what we were asking you to do.

And she said, I, she said, I probably need to apologize to you because I told your mother you were rebellious and disobedient. And I encouraged her and her discipline of you. And she said, I’m not sure I was right. So that is. That is something I’ve always found very interesting is, but I, I, I’ve had to live in a lot of forgiveness and go through a lot of emotional therapy to forgive the trial and error.

Because I think that, this is something that I would say to anybody with a, who has had a lifelong disability, I think parents do the very best that they can and with what they have to work with. I don’t think anybody intentionally hurts their child with a disability. But I also think that, especially when I was being raised, there wasn’t enough information out there about limitations or lack thereof.

And maybe that’s not a bad thing. I didn’t know until I was in college that people with a neurological problem are not supposed to be able to chew with their mouth closed. And because of the social circle that my mother and father moved in, we went to a lot of fancy dinners. And the, Amy Carter was in, in the governor’s office as the first daughter when I was, she’s not, we’re about the same age.

And, uh, I got to go to dinner with them one night with her. And it, to my great embarrassment, we, we’d been working on table manners all week. And I understood the forks and I understood the napkin and everything. Then just before the meal starts my mother produces this little gold easel with the calligraphy sign lips together, please And I got to sit in the governor’s mansion with this placard in front of me lips together, please and that that that placard went with me for about three years at every meal that I ate at home or away from home to reinforce the idea that I needed to have my mouth closed when I chewed and it worked it worked. Nobody’s ever turned me away because I had bad table manners.

Good. You’re making your mom proud even today with that. And you don’t have to have a reminder in front of you anymore. You, you mentioned that, um, the neighbor’s mom. Who had said that she felt like she needed to apologize for saying that you were being disobedient or willful or whatever.

Um, I think, I think the way that you worded that describes a lot of kids who have disabilities. The um, the skills that are needed to continue with your peers through different stages as you’re growing up. If you have a disability, if you have a challenge, however you want to term that, you are having to be more creative to get that same result.

And so your learning skills to navigate a little different path, to still seem like you’re following that same path. And, um, and I, I mean, as a parent, I did the same to my son. where it seemed like he was being disobedient, but he wasn’t. It’s just, it’s an outside-the-box thinking that he was using to get, to get the job done.

And he and I have had that apology time as well. So, um, but, um, but the number of teachers through the years who would report the willfulness or the disobedience, And, um, and somewhere along the line, before he and I even came to an understanding, I had started asking him the questions. Um, when you did this, what were you thinking when you did it?

And it helped me understand the motive behind the behavior, instead of, instead of superimposing my own thought of what the behavior meant. And I learned a lot once I started asking that question, that 9 times out of 10 had nothing to do with any type of disobedience. In fact, it was most of the time a very kind-hearted gesture that just went wrong or didn’t look right when it was happening.

And so I think, I think that’s, that’s what’s happening. But looking forward though, the skills that are developing are strengths that, that each person that’s, if you’ve gotten to that point where you can. Start devising your own creative way to get to things. Those are skills that are going to last your lifetime with it.

So, um, so yeah, anyway, I just wanted to, a little, little tangent there, but it just, just was, was connecting a few thoughts that I had had, um, on that, that topic.

No, I think it’s, it’s so important, um, children with disabilities have self-image problems anyway, and then to be told that they have a character flaw such as, you know, willfulness, it’s painful.

Well, it’s frustrating because you’re being judged all the time. Incorrectly.

Exactly. Exactly.

So, um, we’re talking about thinking creatively and all. Um, can you share any adaptations or accommodations that you’ve made in your daily life, but also maybe as a child with school even? Um, were there any accommodations that you were using?

I started school before the Rehab Act, before the Americans with Disabilities Act, before accommodations were really a thing. Because I didn’t have an intellectual disability, it was thought that I didn’t need an accommodation of any kind. Um, when I got to high school, I had a teacher who had her master’s in adaptive physical education, or as it was called at the time, physical education for the handicapped.

And… She, I was a sophomore when I got to her class, and she pulled me aside and she said, Listen, I’d like to try something with you that might, you know, she said, You’re the first student I’ve had with a physical disability, but you’re not going to be the last. And I have this master’s degree, and I’d like to get, to have you be in charge of all the teaching of the rules of all the sports we’re going to learn.

And she said, instead of Playing the sport, you will go to the library and learn about the history of the sport, how to referee the sport, and she said, and then you’re going to sit on the sidelines and be the sideline sportscaster and referee for all the, all the games that we play of the sports. Gave me a lifelong love of…

sports broadcasting. Um, a lot of people are really surprised that I didn’t go into play-by-play. Uh, that’s part of how I paid for college was doing play by play with our college radio station. Football and basketball games. Uh, she gave me a love of management. I managed basketball in high school and a little bit in college, not as much in college, but um, and did athletic training.

She, because she had a vision for physical education being more than just about what I could do on the court, and it being how I could participate, and it was so much fun. I, it was discovered early on that if you stuck a microphone in my face, I could talk ad nauseam about anything. My very first public speaking experience was when I was in the third grade and we were doing, and this was an accommodation too, as I look back on it, it just never occurred to me that this, until just this moment, that it was an accommodation.

I knew that I was going to look awkward doing the, the folk dancing that we were learning and, and that we were going to dress up and do so dress up as pioneers and do. So she had me dress up as a pioneer lady in a calico dress and I called the dances with the, with the bluegrass band and with the caller.

He taught me how to call and then. Before each dance I got to go and tell what the next dance was and just do a little 30-second history of it She wrote everything. It was just my job to read it It gave me, and I’m grateful for the teachers and for my family early on that they discovered that I had this self-confidence to be in front of people, even though I had a very poor self-image, I loved being in front of people.

Um, I love, to this day, I love stand-up comedy and I love public speaking. If I ever leave policy, it will be to do full-time public speaking. Because I just, it, some people get really scared when they go on the stage. The more people that are in the audience, the less afraid I am. So it’s exciting to, to, to, as I sit here and think, I hadn’t thought about this in a long time, and I thought about it a little bit as we were, as I was looking at the questions.

To have these teachers that saw in me a way that I could participate and that I was good at. That they didn’t have to teach me how to do it, it’s something I just automatically understood.

Yeah.

So.

So the, so you had a pre-adaptive PE teacher in high school. Because that wasn’t called that then. Um, so you had the accommodations with modifications happening there. Um, but because, um, you didn’t have an intellectual disability for school, I’m assuming you didn’t need any modifications.

No, I did everything everybody else did. Another accommodation that I received when I was in college and again, this is, I, the ADA, I graduated from a college in December of 89 before the ADA was passed in the spring of 90 and it I Have a professor who I’m still very close to to this day who said to me he said You’re really struggling with written tests, aren’t you?

And I said, yes. I said if I can, if I’m sitting down to write an essay, I’m fine. I said that there’s something about knowing I have to answer five essay questions in an hour. I just get completely… I’m completely locked up. That’s the only way I know how to describe it to you. He said, well here’s what we’re going to do.

I want to try a little experiment. He said, I want you to come. He said, I want you to come to class the day of the test. I want you to come to my office that afternoon. And I’m going to give you the tests orally. And let’s see how they go. And after that my grades improved dramatically. Um, not because the material was hard, but because I was failing the test.

Because I’ve had test anxiety and because I had, um, because I had this, and that is, um, the inability to manage time is a part of having an intellectual developmental disability. Um, and I, once I was able to do it orally, I literally would finish a five-question essay test in 15 minutes. Because I could just give the answer and be done.

And I could explain it in three minutes where it was taking me. You know, ten times that long just to write an answer. Not because my handwriting was bad, but because I just was so concerned that I wouldn’t put the right facts in the right order. But if I could offer them verbally, it changed everything.

One thing that you did ask me that I would love to talk about very quickly was how did it affect my, how has it affected my working, my, my professional career? And, yes. How has spina bifida affected that? Well, it has affected it because I’ve like Just this, I started a new job in September and I missed, I worked from home sort of during that month, but I was very sick with the bladder infection. Bladder infections are very common for people with spina bifida. Any office that I work in has to be accessible with an accessible bathroom. Um, I don’t have quite that luxury yet at my office.

We’re making some accommodations. We have just gotten an amazing grant to help us update our building and make it ADA-compliant, which is pretty incredible. Um, and I’m excited to get to, to be, it’s actually our vice president that’s going to be overseeing everything, but I told him I was going to ride second because I, it’s ADA related and I just can’t keep my toe, my mitts off of it, so.

Does, does ADA require that your workplace have those accommodations for you, or does it depend on the size of the business?

It depends on how many employees. It depends on how many employees. To me, and this is something that when October rolls around, it’s Disability Employment Awareness Month, that can be talked about in more depth, but to me, any employer worth their salt who understands that someone with a disability is just trying to support themselves and is willing to give the very best they can in everything they do will make the accommodations even if it means remote work.

That’s, that’s true because it doesn’t necessarily have to cost them more. If, like as far as restructuring their business.

Right.

Building.

Um, most students are coming out of college these days with everything they need to accommodate their disability.

And they just have to take it to work with them. Um. And when there need to be structural modifications, it’s not hard to find, especially in smaller towns, people that are willing to donate their services and donate the materials as a tax write-off, right?

Well, and a lot of the, you’re saying the college students, a lot of them would have some of the funding from vocational rehabilitation to help them get started, right? If they haven’t been working already. At least that’s my understanding of it. I’m still clarifying some of those things.

Yes. And it can vary from case to case. There, um, one of the policy initiatives that I’m working on is, is changing disability services so that there is a general framework and then specific, the ability to tailor to specific needs.

Because right now, a way, the way that a lot of it is structured is that you just sort You either fall into a criteria or you don’t. And that’s not good.

Um, do you have any advice for, um, Um, for others who have been recently diagnosed with Spina Bifida, um, or parents of young children who have been diagnosed. So some in your case that may, that may have gone unnoticed for a while, or for a parent who has a younger child and they’ve gotten the diagnosis.

For somebody that gets their diagnosis as an adult like I did, learn everything you can about what it is. And all of a sudden your life is going to make sense to you when you start seeing the quirks. Um, One of the best things that happened to me, it’s also one of the most frustrating things in my life, is that I’m on the advisory board, the adult advisory board for the National Spina Bifida Association. And there’s this one woman in the group that she and I just immediately clicked.

And she was like, I was like, she said something. I said, me too. And she said, really? And it turns out that a lot of the symptoms because she has spina bifida occult as well and was not diagnosed until she was an adult. Um, And just, um, she wasn’t as old as I was, but she wasn’t diagnosed until she was an adult.

And she just, I mean, it was so neat. Um, you know, C. S. Lewis, I think, is the one who said we read to know we’re not alone and having a support group lets you know you’re not alone. So join a, as kitschy as it sounds. Even if it’s an online support group, join a support group. Um, yeah. For people who have children diagnosed with spina bifida, get to know other parents of children with spina bifida, and do not take advice from anybody that does not have a child with spina bifida.

Do not listen to them. Do not allow them to invade your mental space with anything Be very kind and even if they’re in your family or your church family or your social circle Be very kind and just say you know I’m really looking for this advice from people who have the same experience. Um, if you don’t mind, I don’t mean to be rude, but I need to ask you to stop giving me this advice because it stresses me out.

Every time that I post on Facebook that I need prayer, um, I have to post the disclaimer of I’m not looking for advice about this particular thing, I’m not looking for If you want to post a verse of scripture to encourage me, that’s great. But just pray for me, pray for Tony as he cares for me. Please do not give me any advice because not everybody’s situation is the same.

And, um, I had a friend in high school who said, Melissa, if you would just walk enough, you would, you would walk straighter. You’re just not concentrating hard enough. And, um, she still says things like that, not to me, but to other people now as a, You know, this was 30 years ago, and she’s still saying things like that to people.

Um, I just simply don’t talk to her anymore. And that sounds mean, but she meant well. She was trying to be encouraging, but to her, because she didn’t understand, it was a matter of my not being able to, I wasn’t doing something right. And if I would just try a little harder, then it would be okay. And, um, I, I also would say to parents and to adults, get the very best medical care that you can get.

Uh, if there’s a doctor, if when you do your research, if there’s a doctor that you want to go see but your insurance doesn’t cover it, call them and ask them if they will allow you to be an out-of-network patient and work out a payment system until you can be reimbursed by your insurance company. Um, if you need something that you don’t know where to find it, um, message me. Um, I’m @DCBelleonWheels on Twitter and Instagram. And I’m @melissa.d.ortiz on Facebook I would, and then my email is [email protected]. I would welcome the opportunity to find you what you need.

Part of what I’m doing in my role at National Center is we’re building an app that when it goes to full operation, you will be able to type in your zip code, your diagnosis and what your specific need is, anything from catheters to um, an accessible church and everything within 100 miles of your zip code that fits that parameter will pop up. And I’m so excited about this, this, um app.

So, I was going to ask you about a new project. So, when is that predicted to be out?

I’m still building the database for it. So, until I can get, you know, until I can, it’s, and that entails, I am right now going, working my way through all 50 states to see what disability programs are available in each state.

I am working my way, um, and I’m, somebody asked me this, how many people does American, ABLE Americans have on staff. And I’m like, me? And we have a research team but they’re researching some other things. This is the building of the database and I’m, I’ve begged for an intern so hopefully I can find an intern that will come and work basically for free three days a week and do the research for me to pull that database together quicker because I am torn between that in between getting out to meet policymakers who need to know about what we’re doing and how we differ from other disability groups out there. Right.

Well you’ve shared your contact information with us. Um, we’ve heard about this. Listeners, you’re going to be hearing more from Melissa. We’re going to have a couple more episodes at least with her.

And um, so, so make sure that you watch for those coming out in the future. But Melissa, thank you for spending some time with me today to help me understand more about spina bifida. Um, I’ve learned a lot and I know our listeners would have learned as well. Um, but also just sharing some of your stories. And picturing more, more what, what life was like growing up with you. So thank you very much.

Thank you. Thanks for the opportunity.

The post Episode #72: Living With Spina Bifida: A Personal Journey appeared first on Water Prairie.

Show Notes:

Find the full directory at waterprairie.com/listen.

In this interview, Tonya discusses executive functioning skills and their impact on students with ADHD with Chris Fugelsang, an executive function coach and founder of Exceptional Path. They delve into the challenges faced by students with ADHD and the strategies that can be implemented to support them effectively.

Chris emphasizes the importance of executive functioning skills in students’ lives, as they play a crucial role in academic success and overall well-being. He explains that executive functioning skills encompass a range of abilities, such as planning, organization, time management, attention, and working memory. These skills are essential for students to navigate the demands of school and everyday life successfully.

They explore the specific challenges faced by students with ADHD, which can include difficulties with time management, prioritization, and task initiation. Chris highlights the impact of these challenges on academic performance, as well as the emotional toll they can take on students.

Chris shares valuable insights into strategies that can support students with ADHD in developing and strengthening their executive functioning skills. He emphasizes the need for structure, routines, and clear consequences to help students stay on track. Chris also advocates for individualized accommodations and support based on each student’s unique needs and strengths.

They discuss the misconceptions and misunderstandings surrounding executive functioning skills, noting that some people may mistake ADHD-related challenges for laziness or behavioral problems. Chris emphasizes the importance of understanding ADHD and providing appropriate support to help students thrive.

Throughout the interview, Chris highlights the significance of communication and collaboration between parents, teachers, and students to create an inclusive and supportive learning environment. He shares that executive function coaching can be a valuable resource for students with ADHD, providing them with the necessary tools and accountability to succeed in academics and life.

The interview concludes with Chris sharing information about his coaching services at Exceptional Path, where he offers executive function coaching for students with ADHD and executive function delays. His coaching aims to help students become more self-aware, develop executive functioning skills, and thrive academically and personally.

*******************

Connect with Chris:

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

 Artist: http://audionautix.com/

Chris Fugelsang is an executive functioning coach and the owner of The Exceptional Path based in NYC who helps kids with unique learning profiles learn how to create habits and routines and develop skills that can help save them from unnecessary pain in the future. Chris has over 16 years of experience teaching in public, private, and international schools and uses that knowledge to help the students he works with today.

About The Exceptional Path:
Exceptional Path provides executive function coaching for students with ADHD, other learning disabilities, and /or executive function delays. They help students achieve academic success by addressing the root causes behind their struggles at school. They work with students who lack skills in planning, prioritizing, time mgmt., self-awareness, working memory, attention, flexibility, self-control, study skills, and task initiation. They provide accountability, structure, and consistency for their clients. Their one-to-one coaching identifies the students’ areas of weakness and creates an individualized and customized plan to develop the skills, techniques, methods, and routines necessary to find success in school and in life.

Full Transcript of Interview:

Tonya: So Chris, welcome to Water Prairie.

Chris: Thanks so much, Tonya. It’s really nice to be here.

So we’ve been playing a game with all of our guests this season, um, called Two Truths and a Lie. And I’ve asked Chris to bring in three facts about himself with one of them not being true.

And listeners, your part of the game is to go to social media, to go to Instagram and Twitter, find the post that matches this episode and put in your guess of which of the three you think are the two truths and which one you think is the lie. And then a week after we post this, we’ll come back and post the answer to it.

If you’re watching this on YouTube, feel free to go down in the comments and leave your guess there as well. So we’ll, we’ll, we’ll check on all of those to see how many of you are getting the answers right. But Chris, do you have your facts ready for us?

I do. My number one is I was once mistaken for a Swedish astronaut. My number two is I live by the beach in New York city. And number three is I used to race dirt bikes.

All right. So listeners go in and leave your guess, but listen to the rest of the podcast first. Then go and leave your guess. So, um, today we’re going to be talking about, um, a topic that I think. I think you’ll find it really interesting. To me it’s very interesting. And it’s one that had that applies to my family personally. So, so we’ve done a lot of research on this ourselves, but, um, but Chris, I’m really looking forward to hearing more about not only executive functioning skills, but just how they relate to some students and some of the children that our listeners may have. To start out with though um, I’d like to, cause I mentioned that, um, That you’re an executive functioning coach, but you work with different types of students, um, both ADHD, 2E students, …. Are there other students that you work with?

Yeah, um, there’s definitely other other students with different types of struggles that I work with. Some don’t even have a, you know, diagnosed disability per se, but for the most part, it’s many of my students are ADHD or 2E or, um, have Issues with executive function delays.

Okay. So, for those that are listening that may not be familiar with some of those, um, I guess it would be an acronym or the, the abbreviations maybe, um, can you just tell us briefly what ADHD means and what 2E means?

Sure. Well, ADHD stands for attention deficit hyperactivity disorder and which, um, you know, can be defined as in its simplest terms. It affects our ability to get things done, right? So it affects our ability to perform actions, sustain attention and resist distractions. So, um, oftentimes we see, sometimes we’ll see hyperactivity very present in younger students and sometimes we won’t see that hyperactivity and that’s more in line with like an inattentive type.

ADHD, ADD or ADHD. Um, so the hyperactivity can be there. And usually as Children get older, the hyperactivity can, can slow down or change or adapt. And they, they find ways to kind of, uh, a lot of students find like that, that hyperactivity aspect kind of decreases with, with maturity. Sometimes the hyperactivity sticks around and it’s hyperactivity of the brain and difficult.

It’s difficult to pay attention and focus and maintain attention for long periods of periods of time. But what I love what Dr. Russell Barkley said the most when he said it’s a performance. ADHD is a performance issue. We know what to do. We know how to do it, but we can’t act on it. So it’s, it’s not, it’s not a matter of intelligence.

Oftentimes, my students aren’t either exceptionally gifted, which is what 2E is, if two, twice exceptional, meaning on both ends of the bell curve. So, um, exceptionally gifted, intellectually speaking, and exceptional in terms of their, they have a disability, a learning disability, which affects how they learn as well.

So, as I was saying, many of my students are either average, above average, or exceptionally intelligent, but they struggle with a lot of these peripheral things. And this is what the executive functions are. The executive executive functions are controlled by that front part of our brains called the prefrontal cortex, and it controls things like organization, attention, focus, planning, time management, study skills, working memory and a variety of other skills as well that are not really taught in school.

So that’s why a lot of times these students struggle academically because they’re not taught a lot of these peripheral things around learning, which prevents them from either accessing the content, getting things done on time or meeting deadlines all these things that we kind of just mentioned.

So you, you got into what I was about to ask you about what executive function is. Um, but, and, and actually even what it’s, why it’s important to us. So without those skills being fully developed, um, it sounds like it’d be really hard for an adult who’s holding a job to be able to meet those requirements of of work and even daily life.

Yeah, that’s a great point. I think. I tell a lot of my parents and my students that these are life skills that we’re developing in these students. When I work, when I, when I do my coaching, I work one on one with students and, uh, we’re, we’re using school as the platform at a young age, but. Really, in reality, we’re developing life skills for students to be able to perform in their careers or later on in their, and the things that they need the things that they need to do to maintain a fulfilling and successful life as an adult, which might be like getting your chores done and, or, you know, washing the car or getting your taxes done. It could be a variety, it could be simple things that we take for granted that neurotypical people don’t have much trouble with, but people with executive function delays might struggle dramatically with, and can I just make one more point about the brain and its development, uh, that oftentimes with executive function delays where we experience an asynchronous development.

So some of these things might be developed normally, and others might be behind. So, although it’s a web, they’re all a web, and they all affect each other, that development of the brain often doesn’t fully, the front part of that brain, the prefrontal cortex, often doesn’t develop until the mid twenties. So, although there are young people, many young people struggle, there is still development taking place and the earlier we can address some of these issues, the earlier we can start to, you know, identify that these are executive function delays due to an ADHD diagnosis.

Or some other disability. Learning disability. Then we can put a plan in place and help these students to have a much more fulfilling life later on because they’re going to have these skills and a variety of skills and tools to pull from to, um, fall back on when they start to struggle.

So you mentioned that the frontal cortex doesn’t finish developing until the mid twenties. That’s in a typically developing child, young adult?

I think it’s in most, I think there’s a variety of, I’m not, I’m not fully, you know. No, abreast of all the science, but I think there’s probably a window of time in, in that mid twenties. But I would say like most people would, brain would develop in sometime around that, that time. I don’t know if ADHD brain takes longer to develop or …

It’s what I was going to ask. If you, if you knew that or not,

I’m not quite sure about the answer to that. If it takes long, if it’s. If it’s an older age, I don’t think it is. I think it’s about that time. That’s when the brain stops to develop. In the ADHD brain, that part of the brain would probably not have fully developed to be able to perform the certain tasks that they would need.

I know that you, I mean, we have children, young children who have developed a lot of those skills already. When, when they’re in elementary school, and then you have others that around middle school, you start seeing a, a change where there’s like a drop off where there’s some who, especially those who may have an ADHD diagnosis seem to be lagging in some of the skills, um, where if you’re, if you’re watching, um, you know, a group of kids, you’ll see the one that has their binder that’s this night and nice and organized and all. And then, then you have the ones that have exploded that are coming through. And some of it may not be ADHD or executive functioning lack. It may just be, um, interest in something else and don’t, don’t really care about their, their notebooks.

But, but, um, but I, I do know when my kids were coming through, that was about the point where we started asking more questions, um, for, for my son, especially. Um, and. And you had mentioned that in school, they’re not teaching those skills. We actually brought it to the school and ask, you know, can you evaluate and can you help us with this?

And, um, they didn’t say no, they just never did anything with the information. And, um, so as a parent, and I’m sure a lot of our parents are listening, it gets, it gets frustrating because you want help and you don’t have the answers yourselves. So, um, so trying to, to help that developing child gain those skills.

And we, as parents don’t always have the tools that we need to be able to teach them those skills. We noticed the difference, but, um, but trying to get in there. So that’s, that’s why I really appreciate this conversation because you’re bringing some information for our parents to be able to understand, maybe understand what’s happening, but then where, where, where can they go with this too?

Yeah. Yeah, just to respond really quickly. I think some schools do do notice the need for this and they try their best to kind of approach it. But what it really takes in my experience is a lot of one on one support, which schools are lack resources and time to time to address these kinds of issues. So, as good as their intentions may be, and as much as they would like to kind of provide this type of support, it’s often very difficult for them to do to do that.

Um, the second thing I want to just quickly say is that you’re exactly right. It’s around, it’s oftentimes around that. Sometimes it’s picked up on a little sooner, but it’s oftentimes at that middle school age where the content starts getting a little bit more difficult and the expectations are getting higher and.

When you could kind of just go previously on your intellect or like your ability to kind of like think through things now you need these other skills to kind of support you when middle school starts to come around. So that’s when the beginning signs often start to pop up. So that’s a great observation.

Well, I was thinking too that at that point. In elementary school, um, the teachers, and a lot of times there’s an assistant teacher that’s in the classroom, they’re able to kind of help walk the kids through processes, step by step instructions, and the students are starting to be more responsible for that themselves by the time they get to middle school.

And my, my guess is that’s why that, that disconnect starts happening, is because they lost the support that was built in to the classroom when they were in the younger grades. And um, because, because as kids are getting older, they are getting more responsibility on their own. And, um, and yeah, and I, I don’t, I don’t want to be misunderstood. I don’t know a single teacher who would not want every child that is lacking in these skills to have those skills.

Um, so I don’t know any teacher that would say no, no, we shouldn’t teach this, but you’re right. It is a matter of the funding and, uh, the resources that the school would have to be able to, to help with that. Um, so that, that being said, I’m hoping that, that we’re going to give at least a little inkling of support to our parents through, through this today.

Yeah. That’s the hope.

So speaking of which, what are some strategies or interventions that can help improve those executive functioning skills?

Yeah, that’s a great question. And I think, I think we touched on this a little bit before. Like, it’s very individual for each student. You know, like, when I talk to parents, it’s very interesting because a lot of their, the learning profiles of most of my students are almost identical in a lot of ways.

Like, they’re really bright. They can really, they, they can, it’s not a matter of of them understanding the content, although the content can be a challenge at some time. It’s usually these peripheral skills that we’re talking about. Right. And for me, what I’ve noticed is the fundamental skill that we can teach our kids is the planning and the organization and writing things down and getting things out of their head.

So when we have ADHD we think we like to, a lot of times we think we can rely on our memories, but oftentimes we already have poor working memories. And we’re wasting that valuable space when we, uh, on, when we could be putting it into a planner and I don’t care what kind of planner my students use. I tell them, you don’t have to use my system, but you need a system, right?

Like, so you need, we need systems and routines. So it does. And to me, the most fundamental 1 is, is that planner calendar, writing things down, getting things out of your brain. Stop using the, that valuable brain space for trying to remember dates and times and what exact and page numbers and things like that and get it all down and have a system for putting it in one place.

And a lot of my students will say, well, I can just look at the Google classroom or I could just look at the school Canvas. Why do I have to write it down all in one place? And it’s like. You can, but that’s actually really bad for someone with it. Those, those programs are usually set up really poorly for people with ADHD because they’re very compartmentalized.

So once I go into one of these assignments, I might get lost in this, in this class’s assignments, instead of like having the, the, the foresight to be able to pull out and go back into another class and check it, check that assignment. So what this does is it pulls everything out and we’re not just planning.

We’re not just planning homework. We’re planning schedule. Scheduled events, um, meetings, sports, sporting events, games, practices, and then we have another section for to do items. So, what I, I really like to use that as our fundamental skill and use the time in these coaching sessions to really just teach my students, how do you plan?

How do you get things out of your head and onto paper in a way that’s visually, like, easy to understand? Straightforward and you can focus on one thing at a time and you can break things. It helps you break assignments down into smaller chunks and be a lot more productive because when we see the whole picture, it’s a lot easier for us to make little, little, little bits of progress throughout instead of working endlessly at the last minute, letting everything pile up and which so many of my students love to do is procrastinate.

So they let everything to the last minute and then they’re overwhelmed and stressed and anxious and trying to get everything in at the last minute. So we try to avoid that. By using a planner.

I know too. It’s, um, using something like that, the way, the way that you described it, excuse me, it gives you the opportunity to be able to mark things off and to see that you are making progress as, as you go.

Where if you’re, if you’re jumping in, like have, having two in college right now, they have different online systems, but each, each professor has the class assignments. You have the overview calendar and the temptation is to say, you know, I’m just going to go by the school calendar that’s there. It has all my assignments, but both of my kids are finding that unless the professor put it in there right, it’s not going to show up.

Like if you have a 12 page paper coming up. It’s only going to show up the day that it’s due. It’s not going to show up a week ahead of time when you need to start your planning and breaking it down. So, um, so we, we’ve, we’ve worked on those conversations here as well. Just, you know, how you have to break it down into the chunks and to know, to know what’s happening.

But, um, so there’s, there’s, there’s some good points there. And I think, I think that’s something that I know with my kids, they were, they were both in public schools. Their schools always had some type of planner, even back in elementary school where the kids were. Slowly learning how to use that a little bit. Um, didn’t really work with either of my kids, but no, but the opportunity was there for them to use it.

I would say no to the most, almost 99% of those planners that the schools give out, they all, once again, they have a great intention. But I maybe know in my, in all my years of teaching, I maybe see like two or three students in my class who could actually maintain and use that the whole year.

Like those, those, the way they’re set up, the, they’re not being used properly and they’re not effective, especially for a student with ADHD or executive function delays. I think they’re more often than not, not a great solution.

So, um, so there, there are others out there that, that would be better situations, or do you create your own for each student?

Uh, I think everyone has their own thing that they like. I’ve kind of created my own system that I think really works well, uh, for most, for most of my students. Sometimes I have students who reject it and they kind of create it and we come up with a better system for them and that’s fine too. But I think, um, you know, something that I stumbled upon is inclusive of a lot of different things.

It’s very visual. It’s not weeks and weeks out. It’s just this week and the next week, and it’s just really straightforward. So it’s, and easy to read. So I think a lot of my students like it and, uh, find it to be effective. But there are definitely other… There are definitely other tools and systems for planning that are probably, you know, probably much better.

Right. Well, I think, I think like, like, like everything, we kind of have to pick, pick and choose what, what fits right for, for the moment and the task that’s, that’s there. Um, what are some ways that parents, um, teachers and other professionals that are supporting students, how can they help them, um, in strengthening their executive functioning skills? Or even developing them to begin with, and then strengthening them as they’re starting to develop.

Yeah. I would say that, you know, I talk about controlled failures a lot. With my, with a lot of parents and a lot of my, a lot of my, I don’t really talk too much about it with students, but what I’m doing with them is. You could, I mean, it’s, it’s a hard question to answer because there’s so many different approaches and so many different types of parents and so many different types of schools and ways of learning that kids are experiencing in education these days.

But what I would say is the number one thing is structure. A lot of times with when we have, uh, students with ADHD, they, and, and, and unstructured time, that’s a recipe for not a good, not a good situation to happen. So what we’re looking for is structure, routines, predictability, and having clear and set consequences.

I know that that that in and of itself might be but appropriate consequences to behaviors. Right? So, like, oftentimes my students love video games and they all they want to do is play video games. But I mean, that should be kind of like the reward for getting their things done. Right? So when I go back to.

So, so sometimes it depends on the parenting style and what, what works for that individual student. But I would say that kids with ADHD need really straight, uh, not, I would say really specific boundaries on when they get to use certain things when they get rewards because then they, then they start to learn bad habits and they kind of fall into traps of not thinking and it just feeds into their procrastination and pushes things back more and more.

So, let’s say bringing in structure, routine, organization. And, uh, you know, clear, clear and set consequences is really important for, for all schools and parents. To bring into their lives of students who have EF delays.

I think a lot of parents could understand that too, because as adults, we, um, we don’t start our day with playing, uh, what, what, what is a game on Facebook?

Maybe what is it? What is it that can’t Candy Crush? I think was, you know, it’s like if you, if you spend all your time on social media. You know as an adult that you’re not getting things done. And so, um, so a lot of times you’re putting that at the end of the day or at the, at your lunch break or something because you’ve kind of, um, naturally set those, those routines for yourself.

So it does make sense that if we can set that up for our kids and to teach them that, you know, this isn’t a no that we’re saying you can’t do this. But we’re saying when this is done, then this is, this is a time to just kind of relax and enjoy.

So a big, big factor is absolutely right. And a big factor of ADHD is impulse control.

So they’re always going to choose more often than not going to choose the preferred task over the non preferred task. So as the adult in their life, we have to kind of. Restructure that and put back in the reward, right? Like that’s what discipline is to put to do the hard thing first and then get the reward at the end. But if we’re it we’re sending mixed messages if we allow I mean it’s hard It’s hard for parents too because like it’s like a lot of times these kids are doing their homework on their computer, and like the distraction is one click away and how do you tell them not to do that when it’s so, so there are blocks and things you can use on your computer.

There are programs you can, you can put up there that I, you know, that I’ve used successfully with kids. But for the most part. It’s it, you know, it’s comes from the parents and it comes from maybe separating, maybe giving them an opportunity to work in a, uh, more common area, a common area where they have to kind of show their screen and see.

And so parents can do a lot of things that aren’t that invasive into their child’s life, but still kind of hold them accountable. So that accountability factor, and that’s what I. That’s why I do a lot of my coaching and that’s why I think it’s so effective is the accountability factor is high because we meet not just once a week, but we meet a second time to kind of follow up. Are you, are you, are you, were you able to do A, B, and C?

Right. When, um, I’m gonna go back to when, um, when we first started talking about this, this topic, um, you used the word “Discipline” and, um, and my brain automatically went to punishment discipline, but you were talking about discipline as far as being organized and being, um, thorough in what you’re doing.

Um, and so I just wanted to point that out to parents that we’re not saying to punish your child with this, but to offer it as a reward so that they can become disciplined in how they’re doing things.

Exactly. Right. So it’s almost like a self discipline, right? It’s like, or teaching, teaching self discipline, which is, which is doing the hard thing first and then, then receiving the reward at the end. So I think, yes, that’s exactly what I meant by that. Thank you for clarifying.

Oh, no, I just, I’m just going where, where my brain was going at the time. So, um. Um, with executive functioning skills, we have, um, you know, we, we have the, the mentality that every kid by this age should be able to do this.

Every kid by this age should be able to do this. What are you finding in your work with other kids? And just from your own experiences, what are some of the common misconceptions and misunderstandings about executive functioning skills?

Oh, that’s another really good question. I think, I think, I think a lot of people will think that a child with ADHD, someone who’s uninformed might mistake it for laziness, lack of intelligence, oftentimes behavioral problems. Um, they’re think like, oh, they’re a bad kid. They don’t know how to behave, or they don’t, they don’t know how to control themselves. But this is all part of not knowing what ADHD is.

So like a really important thing about this conversation and what I do with my students too is my job is to shine a light on and bring awareness to these ideas so we can educate people and understand that no, this is not this child being lazy. They want to do it. They, they’re trying to do it, but they, they have an impediment that.

That, that holds them back from doing that, from completing that task or doing that thing. And, um, can, instead of, instead of getting frustrated or upset with the child in the classroom, maybe we can ask a better question, ask better questions such as, what can I do to support this child? What can I do to make my classroom more inclusive of them, more, uh, suitable to allowing them to, to learn?

And maybe giving them the lead or giving them tasks, which are which you wouldn’t typically give to one of your students to do that gets them engaged in different ways because they are eager to learn and they do want to complete it, but they might need a slightly different way to go about it and they might need better support with different supports. That is not often that are not often. given in a traditional classroom setting.

I know, um, looking back to, um, again, with my son when he was in middle school, we, um, we had a lot of, a lot of misunderstandings that were happening because, because of these reasons. And, um, and the one thing that I kept coming back to with some of his teachers was, um, before assuming fault. Um, and I’m not saying that, that my child was, was without fault. I’m sure there were times where it was just misguided, um, choices that were being made. But, um, but if you could ask the why behind the action, a lot of times that’ll tell you more information than assuming something. Because sometimes the behaviors are very well meant, but they come across the wrong way.

And so if you can get the child to tell you, you know, why they did such and such, or what, what, not, not what were you thinking, but, but what were you thinking when you did this to hear their point of view? You see a whole different side of of all of it and and nine times out of ten I find that the kids they actually really meant well. They had they had a heart of gold. They just it just came across the wrong way the way it was going

I think it’s a great point. And I think I think kids often when they, when they, when they are able to do that and advocate for themselves and understand and, and understand who they are as learners, then they can make decisions to change and see once they see why I know, I know it’s a lot of times my students, they’ll, they’ll until they take ownership of it.

And they see why they need to change. They’re not like, it doesn’t matter if it’s just coming from me, it doesn’t matter. So a big point of this is like, yeah, if we ask these, if we ask our children, why. And we listen to them, and we can help them to make better choices and change their behaviors for future, future times that problems might come up or those similar types of situations might come up.

Yeah. Well, like, like, like with everything else, it’s a matter of education, you know, we, we need the adults are working with our kids to understand some things, but we also need to help. Teach our children how to understand that there are reasons why certain things have to be done a certain way and as frustrating as it may be, because it can’t be the way that they want it to be.

And I, I, I tell, I tell my students sometimes I was like, you got to learn the, the, the rule, like, uh, sometimes I like to think of school as like a game and. Once you know the rules of the game, then you can bend the rules slightly. And once you know how your strengths and weaknesses, then you can use your strengths and not to break the rules, not to do anything illegal.

Not to co pro to to do, do anything that that’s against the, but you can find your way through this game of school. And if you know the rules, you can, you can do things. Like to benefit you. So, um, so part of that is that I think, I think kids like that because it’s a little bit of the gamification concept there, but it’s also like, I’m not going to leave any points on the table.

Like, why would I skip that assignment? If I know it’s, it’s really easy just cause I don’t feel like doing it. Oh, that’s free points. I want to get that. I want to take that out. I want to scoop that up and make, and make sure that I get every point I can. Oh, can we add a little bit of competition in here as well? So I, so it depends on the child, but you try to use the, their strengths and there’s their individual strengths to make them, uh, perform right. Help them to perform.

So just, just to interject here a little bit. So I’ve talked about my son’s son through this during those middle school years. Um, for the parents that are listening, who may have a middle schooler, Christopher’s now, um, he’s going into a senior year in college and these are still challenging areas for him to work through, but his mindset today, unlike that seventh grade kid that he was, um, is he wants to make the highest grade possible just to prove that he can do it. And, um, and so he may not take the easiest route to get there, but he will get there every time. And just, um, made President’s List this past semester with a 4.0. A lot of work went into it, but you know, if, if we can help our kids learn those skills and the reasons why they want to do them, it can help push them to to be who they can be and to learn, to learn how to do it on their own as they’re coming through. So, um, so whether that’s an encouragement to somebody or not, we’ll, we’ll see, or, or, or just a, a, a proud mom moment there.

No, I think there’s more to it than that. That’s an amazing story. Yeah.

So, um, Accommodations, support strategies, um, what are just some basic ones that, that you see maybe more common?

Cause we know every child is going to be different in what they need, but what are some things that you’ve seen be effective in the schools and the environments that your kids are working in?

Yeah. I would say that, um, you know, in reading hundreds of, uh, and psych evaluations from the neuropsychologists over the years.

It’s very individualized, like you said. But, um, so depending on the student, like some things are necessary. Others are not. Some, some kids have these accommodations and they don’t even use them. Like extra time can be like, a great accommodation for certain students, but some they have it and they don’t like the first ones finished every time.

Um, no taking the same thing. It’s like, I think, I think. Evaluating which accommodations are working for you and which aren’t and finding your individual kind of accommodations that you need and making sure they’re accurate is the most important thing. Um, like, for some, some students, like, I think. You know, having the deadlines pushed back or like being able to hand things in late for a lot of students with ADHD.

I think it’s, it actually doesn’t work because it teaches them that they can hand things in late. And then in the real, and when they, when they graduate school or when they go to college and then they can’t hand in something late, then they’re in for oftentimes a rude awakening. So I think having the deadlines, I like the natural consequences.

I like the kind of like. Uh, you know, like I said, I’m not looking for my students to to experience pain and suffering, but I do think that it teaches them a good lesson on how to kind of maintain deadlines and stick to things. And if they don’t feel any kind of pain, then they’re not, they’re most likely not having any incentive to change.

Um, I would say preferential seating is often important, an important one where you can sit close to the, close to the teacher or close to the door or away from the window, wherever you feel uncomfortable, but it’s all all of these are very individual and it depends on the student and what they need individually.

Okay. Well Chris, we could, we could continue talking for a lot longer on this cause it’s such such a big package, but, um, but I wanted, um, to wrap it up just so the, so we can can go in. Cause I know you have a couple of things and I’ve got some things too. Um, but before we go. What is the best way if, if those that are listening, if they want to get in touch with you, if they’re in the New York area or if they wanted to check your online information, what’s the best way for them to get in touch with you?

Uh, yeah, thank you, Tonya. They can get in touch with me through my website, EXCEPTIONALPATH.COM. That would be the best way to contact me through my contact on that website.

Tell us a little bit more, um, about your actual business, some, any projects that you’re working on. Um, and just, just if parents did want to work with you, what, what is it that you have to offer?

Yeah, sure. So, um, like I mentioned, I offer a coaching service, so it’s for. It’s called Executive Function Coaching. It’s for students with ADHD, 2E, other executive function delays. And I support them in this process of kind of becoming more aware of their difficulties, supporting their executive functioning, building up their skills.

I tell parents often that like I’m providing them with a toolbox of strategies because oftentimes we’ll get tired of using the same strategies or they will stop working or something like that. So. Oftentimes, my students with ADHD need a variety of tools to kind of approach different things. And then I provide the accountability and support that’s needed to.

So I teach these skills, such as, like I said earlier, planning, prioritizing organization, time management, attention and focus, study skills, working memory. But I also provide accountability around that and support and a trusting environment where students can learn to practice these skills in a, in a supportive, um, environment where they can, uh, excel and use them in the school environment where they can, uh, improve their grades.

And like I said earlier, it’s not just school that we’re working on. We’re using school as the platform, but this is like life skills that they’re developing, um, for ongoing success throughout their life.

Excellent. Excellent. Well, Chris, thank you for spending some time with me today and talking through the executive functioning skills and understanding that better, uh, understanding a little bit more on ADHD as well. And um, I just really, really appreciate the information you’ve been able to share with us. Thank you.

Thank you so much. It’s been really fun. I really appreciate it.

The post Episode #71: From Chaos to Control: Navigating Executive Function Challenges appeared first on Water Prairie.

Show Notes:

Find the full directory at waterprairie.com/listen.

In this insightful interview, Tonya talks with Arianna Bradford, an expert on ADHD and founder of the “Chase the Chaos” digital summit. Arianna shares her personal experiences with ADHD, discussing the challenges she faced growing up, the impact of her diagnosis, and her journey of self-discovery. She emphasizes the importance of understanding the diverse manifestations of ADHD and highlights the misconceptions surrounding the condition.

Throughout the interview, Arianna addresses common stereotypes about ADHD, debunking the myths and explaining how ADHD affects individuals differently. She emphasizes that ADHD is not solely a childhood disorder and provides valuable insights into the specific challenges adults with ADHD may encounter.

Arianna sheds light on executive functioning and the difficulties it poses for people with ADHD, including time management, organization, and impulsivity. She discusses strategies to cope with these challenges, such as creating routines, using reminders, and employing various tools and apps.

The conversation delves into the relationship between ADHD and emotional regulation, highlighting the heightened emotional sensitivity often experienced by individuals with ADHD. Arianna shares coping mechanisms and encourages seeking professional support to manage emotions effectively.

Tonya and Arianna discuss the benefits of a supportive community for people with ADHD, acknowledging the significance of connecting with like-minded individuals who understand the challenges and triumphs associated with the condition.

Arianna further explores the link between creativity and ADHD, describing how ADHD individuals often have a strong ability to recognize patterns, which is sometimes mistaken for psychic abilities. She encourages embracing this creativity and incorporating self-care practices into daily life.

The interview concludes with Arianna sharing her upcoming “Chase the Chaos” digital summit, a platform for people with ADHD who enjoy focusing on multiple interests. The summit aims to create a community where diverse interests are celebrated, and individuals can learn from experts and share experiences.

Overall, Arianna’s expertise and personal journey provide a comprehensive understanding of ADHD, breaking down stigmas and offering practical strategies for navigating life with this unique condition.

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Connect with Arianna:

Resource mentioned during this episode:

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Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

 Artist: http://audionautix.com/

Arianna Bradford is an ADHD coach and multipassionate entrepreneur who believes in supporting ADHD adults through figuring out how to work with their brains instead of against them. After finding out she, herself, had ADHD in 2021, Arianna became dedicated to understanding the disorder and helping others around the way. She is also a writer, singer, amateur herbalist, and parent of two children, one of whom is also ADHD. She lives in Costa Rica with her husband, the aforementioned two children, her cat and her dog, and she’s super excited to be here.

Full Transcript of Interview:

Tonya: Arianna, welcome to Water Prairie.

Arianna: Thank you for having me.

Sure. This is, I’ve been looking forward to this interview. Um, we’ve talked a little bit trying to get our schedules meshed together, but I’ve really been looking forward to digging into this a little bit. Um, for those who’ve been listening, I have a son who has ADHD and I have never been officially tested, but, um, have many, many markers.

So, it’ll be interesting to hear your story and your own journey as well. But before we get started, this season I’ve been, um, playing a game called two, two truths and a lie with my guests. And I’ve asked everyone to share three facts or pseudo-facts about themselves. And Ariana has agreed to play the game with us.

So what are your three facts that you want to share with us?

Okay. So my three facts are, um, I have, I am one of nine. I have eight brothers and sisters. Uh, I moved to the country of Costa Rica in 2021. And I started college at the age of 15.

Wow. All right. So if you’re listening for the first time, the way that you play the game is you want to go, if you’re watching on YouTube, you want to go to the comment section and post your guess of what you think the lie is or the two truths, whichever way you want to type it.

If you’re listening to it or reading it on the website. Then go to our Instagram or Twitter accounts and post your answer there where the posting is for this. And we will post the answer a week after we, um, release this episode. So, um, so we’ll see how many, how many of you are able to get this right.

Right. Right. So yours are very different too. The three that are on there. So it’ll be interesting to see what everyone thinks.

I did that on purpose.

Right.

I like to try to confuse as many people as possible. That’s kind of my way of doing things.

So if you’re listening, the key here is listen through the interview because you may get some hints of what the answers are.

And then you can always go back and listen to that section again if you need if you need a reminder of what the three are, that you’re guessing on. But today we’re going to be talking about ADHD as the broad topic and digging in a little bit here. Um, Ariana, you have a personal journey with ADHD yourself.

But then you also, um, are an ADHD coach. So can you tell me how you came to know that you have ADHD and then what led you to become a coach from there?

Right. So my way of finding out I had ADHD is actually not that special. If I’m a hundred percent honest from all the people I’ve spoken to my age, uh, you know, I would kind of like to act like it’s a special service.

Really not. Basically what happened was, um, my son. He was five years old at the time and he was really starting to struggle at school and, um, it’s weird because without speaking to each other, my husband and I had actually both started to suspect he had ADHD at three, but we, you know, we looked up what the, the, the symptoms are for a child and it’s really hard when they’re that young to know how much of it is they’re a child and how much of it is they have ADHD.

So. We had been trying to hold out for as long as we could before we got a diagnosis, but when he hit five, it really started to cause problems at school, and it was really starting to mess with kind of his mental health and how he saw himself. So, uh, I took it upon myself to start doing some research into what the symptoms are for a child with ADHD, and it was like looking into a mirror.

Um, a lot of the symptoms that I was finding. So for children, you know, not so much, but then out of curiosity, you start looking into, okay, so what does this mean for adults? And the next thing you know, you’re like, I do that. I do that. I do that. I do that. And, and, you know, you, you kind of follow down this list, um, realizing that a lot of the things on the list so, you know, I’m looking at this list of stuff that matches me really well. And I always, it’s kind of a joke, kind of not. I always talk about how people, adults with ADHD, um, tend to go through five different phases in their ADHD journey. And the first, which was also where I was when I was looking up the symptoms from my son, is this idea of, I probably don’t have it.

Like everybody does these things, right? And as I started reading more, I started saying. Okay. I reached phase two, which is maybe I do, but I’m not actually having problems with my life. I’m fine. I don’t, you know, I don’t have any real issues with this. Like, yeah, but I figured out how to work around it. And some of us never reach past that point.

We always, you know, we stayed there, but, uh, those of us who get the diagnosis tend to reach phase three, which was, uh, after my son got diagnosed. I started really thinking about. Whether or not I was doing myself a disservice by not getting diagnosed myself for a few reasons. For one, I wanted my son to have someone that he could identify with in the family.

And, you know, he has an aunt who has ADHD, but he spends all of his time at home, you know, with us. I’m the person he sees 24 7, so there’s that. Uh, and also the fact that I realized that some of these things that weren’t problems, very well. Might have actually been problems. And I just didn’t want to admit it.

So, uh, I went into that phase three, which was, okay, I’m going to get diagnosed. Let’s see what this is. And I did. And, uh, it was really simple. People tend to ask me, you know, how did you get diagnosed? And it’s not this easy for everyone. I want to make it clear that it’s a super anticlimactic answer. I just Googled like.

People who do evaluations and, uh, ADHD in my area, I was living in, uh, in Florida at the time and very easily found a place that did it, called them, said, Hey, do I have to have a doctor’s referral to come see you? And they’re like, no. Said, all right, cool. Uh, I would like to get reviewed for ADHD. And they’re like, all right, you can do it via telehealth on Friday.

And I did it on Friday. Yeah. The lady was like. You have ADHD. Do you want to look into medicine? I said, Yes, sure. She goes, Okay, let’s go ahead and set you up for an appointment with a psychiatrist on Friday of next week. And by the following Friday, I had a meeting with a psychiatrist. So I always feel really bad for because, you know, people will ask me and I feel like I should be giving this long like Lord of the Rings type story of like, you know, my journey to get diagnosed.

But it was so much easier than a lot of people assume. Um, so You know, I, I did that. And after I got diagnosed, um, you kind of go through, this is, this is all part of that phase three that I’m talking about, where you kind of go through just your whole life again and start making these connections that you didn’t have before and relearning about yourself and re understanding yourself.

And you’re just like. Oh my God, that’s why I would never remember to turn in my homework, even though I would do it the night before, you know, like suddenly all of that makes sense. And if people are going to respond to that with different ways, some people respond to it with anger at what could have been, they feel like there were things that were lost.

I kind of just responded to it with more of a, whoa, and here are all these things that I’m actually doing that I shouldn’t be able to do supposedly, how did I get here? How am I doing these things? I had written a book. I was running a business. I was homeschooling two kids and I’m like, and I want to make it clear.

I wasn’t doing these things perfectly, but I was doing them. And I was like, how am I doing them? And I realized that I was, I have the kind of mind that likes to look at things from a very methodical perspective. And who tries to look at the parts of things and why they work. See, this is where that ADHD overthinking actually comes in handy.

Um, and as I started to learn that, I was like, I, I feel like this is a skill set that a lot of us probably do have somewhere. We just need somebody to help guide us there. Um, and so that was where I came with up with the idea of, I want to help others like me. Um, that also in the fact that like, I, I don’t want to discount, uh, cause I know there’s this whole argument going on right now online about, you know, as social media making is that everybody thinks they have ADHD and we could go into that forever.

But the one thing that I will say about that is that I would not have felt emboldened enough to go get checked, to go get evaluated, were it not for the fact that there were people already talking about what it was like to have ADHD. And being able to connect with those people and identify with those people is a huge reason for why I felt comfortable enough getting, getting looked at.

And that’s what kind of also pushed me to become a coach was the concept of being able to give someone that feeling of connection of community because we need that. Um, and in fact, I’ve had a couple of clients who have not. Um, who came to me because they suspected, but weren’t diagnosed yet and got diagnosed while we were working together.

So yeah, all of that to say, um, that’s why I became a coach. I became a coach because I want to help people kind of on their own personal journeys and that’s where I’m at.

When I think, you know, we hear more and more now about how, how many girls and women go without being diagnosed. And I think it can present differently from person to person.

So especially, I mean, you’re, you’re a lot younger than I am, but you know, even, even you’re saying you, you came all the way through school and it was never a question apparently. Yeah.

Yep. So nobody ever, nobody ever suspected it. I didn’t even suspect it. Not until I was in my thirties. So it’s just, yeah, it was one of those things that, you know, it was still mistakenly seen as a problem.

It’s a boy’s disease. And so if you were a girl who wasn’t really causing much trouble, nobody really looked into it that strongly.

So my son is diagnosed, my daughter is not, um, the suspicion is there, um, the same as with me. We kind of haven’t gotten to the point where we’ve gone to pursue any type of testing or diagnosis.

But, um, but with my daughter, I can remember her being three years old and sitting down and working through a first-grade workbook cover to cover without, I mean, just that hyper-focus. Um, and same way, and I’m the same way too, I mean, it’s, I, um, chose to go into education instead of computer programming because it was too addictive to go into programming.

It’s I would never leave a computer lab if I went into that. So there, so there are, so like you’re saying, and for you, you have, you have some skill sets there that, that allowed you to. To move beyond what might have been a problem for the next person because of the way that your brain is working there, but that can become a strength in some ways to have if directed the right way

Absolutely, absolutely.

So, um, so back to my questions that I do have a path here, but I have the questions for a reason, so we can stay on the path or come back to it as we get there.

That’s why I didn’t say anything. I could have kept talking, but I was like, no, no, no, no, this is a guided journey and I am, I am merely on this journey. I’m guided. So, yeah.

It’s, it’s fun sometimes the way that, that some of my conversations do meander a little bit, but, but, but I do want to make sure that, that I get through it within our timeframe here.

Exactly.

Um, so, so having a, being a parent of a child with ADHD, what are some effective strategies that you’ve discovered that help with supporting or empowering children with ADHD? Now you’re a coach, so you’re bringing in both the parent side and the coach side, but thinking as a parent yourself, like what, what have you and your son come up with that are working for supports for him?

I’ve got to say that at the very base of it, my strongest tool has been empathy. Um, being able, and I, and I want to make it clear right now, I actually for a while was, I, I spoke to parents and that was mostly what I did. Not an ADHD, just spoke about parenting a lot. And so I feel. Very compelled to say that I am not saying that I am perfectly empathetic to my son at all times.

There are a lot of times where I will get mad at him for the exact same stuff that I do. Uh, so, please do not think that I’m saying I’m perfect. But, what I do is I try to respond to a lot of his difficulties with an understanding that I can only have because I have the same issues he does. I don’t even have the exact same issues and I try to keep that in mind.

He is ADHD and autistic. Um, and I am, I’m just ADHD, but I try to keep in mind, you know, that there are certain things that he and I can both understand. Uh, and so sometimes the best thing that I can do is start what I’m about to say with, I get it. I know what you, I know what you’re feeling right now.

You’re feeling X, Y, and Z. And especially because he has that difficulty self regulating his emotions, that sometimes calms him down, I think, probably the fastest. Because there is this feeling that part of that dysregulation is coming from, I don’t know how to name what I’m feeling right now. And so me being able to say, Okay, I know what you’re feeling, and it’s this.

And I’m saying that because I’ve been there too. We do sometimes tend to make progress much faster. Um, and then, you know, just kind of keeping in mind that ADHD years are very visual. So, you can’t really expect, you can’t really expect most kids, but especially ADHD kids. You cannot expect them to remember anything that is not directly in front of their face.

So, you know, if there’s something that I want my son to remember to do, it’s got to be visible. It has to be. Written in a notebook or written on a, on a whiteboard or hanging on the fridge. It has to be somewhere where I can point at it and say, this is that thing I told you if it’s not, it’s kind of like, if you’re listening to this and you’re the kind of person who’s like, if it ain’t on my calendar, I’m not going to remember that’s, that’s what ADHD kids are like, just like 10 times worse.

So imagine if you will, you know, that you’re a kid trying to be told that you’re going to do something. But you don’t have it anywhere in front of you to remind you. So, that is, is also huge. Making sure that things are visible, and that they are covered multiple times. If I know that we are going to be doing something Sunday, I, if I, and I know that he doesn’t like it especially, I start telling him Friday.

I’m like, hey, I just want to let you know, Sunday at such and such, we are doing this thing. Saturday. Hey, Sunday at such and such, we are doing this thing an hour before. Hey, remember that that thing is happening. It’s happening today at such and such a time because he needs that reminder, right? We have those issues with short term memory and kids especially do not like being as especially ADHD kids do not like being caught by surprise.

So And all of this comes back to, and all of this comes from what I mentioned, it all comes from empathy, from me remembering, alright, how would I feel if somebody was responding to me this way? How would I feel if out of nowhere, you know, I’m super hyper focused on this book or TV show or video game, and someone was to come up to me, And tell me, Hey, right now you have to go put down this thing you’re hyper focused on and go do this other thing that you don’t want to do.

Of course, the understanding at that point, right? Like anybody would be pissed. They’d be like, I don’t know. Like, I don’t want, I don’t want to do that. So, you know, keeping that kind of stuff in mind makes us so that you remember to do things like remind them 30 minutes before 15 minutes before 10 minutes before five minutes before.

And it, it also takes the frustration out of it because I could, I could tell you right now, I could feel it, that some parents are probably hearing this and being like, that sounds like a real pain in the, I don’t know if I’m allowed to swear, but pain, pain in the butt. And it’s like, yeah, I’m sure, yeah, you’re welcome.

I’m not sure if, uh, it, and then that’s, I’m sure it is. It probably does seem like a pain in the butt, but if you are thinking about it beforehand and you are understanding that it is a necessity. For this other person to ultimately do something that you want them to do, it’s suddenly not as much of a pain in the butt.

It’s like, okay, this is, this is something that’s necessary for me to get what I want at the end of it. Um, so yeah, all like, again, I always feel like I have to come back and be like, I know I rambled a lot, but the very base of this whole thing is your number one tool is going to be empathy. And if you are listening to this and you have a kid who has ADHD, but you don’t have ADHD.

That can be difficult. You may not be able to empathize, but you can sympathize and sympathizing. You know, part of that is reading up on it, learning what what comes with ADHD, learning about what ADHD kids can do and can’t do and what they don’t like and what they do like, and then trying to remember that and inject that into the things that you ask for.

And that way you’re it’s a lot easier for you to say, okay. Um, maybe I don’t quite understand why you’re doing this, like from a personal perspective, but I do know that I’ve read somewhere that you don’t like when people do this thing. So that’s why, and I sympathize, but here’s what we have to do instead.

Right.

I think, I think you can bring up a good point because it’s really important that we understand that our children aren’t just trying to avoid what we’re doing or ignore what we’re doing. They might have their moments when they want to do that too. But, don’t read into their behavior that it’s willful disobedience that’s happening.

Because it might be they’re latched on to something and we didn’t give them that, that prep time. So I, I, I give you, you kudos for. Starting two or three days ahead of time because, um, I was good if I would remember to start an hour ahead of time with it.

Yeah, no, I, I, it is, that is one of the things that is decidedly not ADHD about me, if I’m being honest, is that I, I don’t, I don’t do like last minute very well or impulsive very well.

That frustrates me. So if, if I’m going to be doing something at four o’clock on Monday and you tell me three o’clock, I’m going to be mad. So I try very hard to make sure that I don’t do that to anybody else around me for that exact same reason.

Yeah. Yeah. So nice. I appreciate the input there. Um, so we’ve talked about, so you found out that you had ADHD.

After you were married, after you had kids. So you’ve got several relationships going on within the family there. How does ADHD impact relationships?

Oh boy. Um, so, um, if we’re talking about romantic relationships, there are a lot of things, and I can say that probably the thing that messed with my relationship the most, one of the things that finally pushed me to get a diagnosis.

is a difficulty in keeping promises. Um, because sometimes you forget, and sometimes you have executive dysfunction messing with you to the point where you don’t want to do it, and so you rationalize it away until you have not kept that promise. Uh, for me, the big thing was that my husband really wanted help cleaning the house.

And I would say, sure, I’ll help out around the house more. But then the moment that I started thinking about doing it, I would say, I don’t really feel like it today. I’m tired. I’m exhausted. And I would take a nap instead. And the next thing I know it would be a month later and I will not have helped with anything and we would get into arguments about it.

And you know, it made things very difficult because at the time I did not know how to explain that. I really, I really did want to, you know, cause to him on the outside it looked like I didn’t. I really wanted to, but I just couldn’t bring myself to. Um, and that is a common problem. A lot of people on the outside, executive dysfunction looks to a lot of people like, you don’t care, you’re lazy, you don’t want to.

Um, where deep down inside you probably do, and you’re probably thinking a lot at the time about how I want to, I want to do this thing, I know I should do this thing, it’s weighing on me, but you cannot make yourself. Um, so that really messes with it. There’s also the impulsivity portion. Again, I don’t really deal with that that much, but you know, that can get very frustrating in relationships as well.

Uh, everything from just randomly spending money that you shouldn’t be spending to, you know, cheating. Um, those are things that can also occur when it comes to parenting children. Uh, ADHD comes with a lot of sensory things as well. And so a lot of sensory things, a lot of anxiety issues, depression, things like that.

And you can imagine that trying to parent is hard when you are struggling through those things as well. Um, you know. I have had days where I have gone through panic attacks and tried to parent. And the, the result is that, I mean, I, I’m going through the motions, but I, I’m not really that great of a conversationalist at that point.

Like, you know, kids are going to bed with no brush teeth and like, you know, wearing the clothes for the day. Cause I’m like, I can barely function, you know? Um, And, of course, there are ways to work around pretty much everything that I’ve mentioned, but it’s really hard when the person involved does not know that they have ADHD.

Uh, it, it makes it so that, you know, they’re kind of like, why am I alienating the people around me when that’s not what I want? And, uh, if you don’t know why it’s happening, it’s, it’s just really hard to fix. So. Yeah. Yeah.

The, um. So, you’ve mentioned a couple of the executive functioning skills, just kind of as you’ve been talking.

Um, but one that I know with our family we’ve noticed, um, and a lot of people I’ve talked to have run into this as well, um, the struggle with time management and organization. You mentioned that some with the cleaning of the house, um, organization would come into that one too. What are your tips or tools for improving time management and staying organized?

I actually just had a class on time management, um, recently, because that is probably the thing that we struggle with the most. And the, the problem is we’ve got about three different things playing a part when it comes to time management. We have, uh, time blindness. Which is very common, which is very common, right?

We have that executive dysfunction, and then we have usually a lack of good tools to help us with both things. Um, and it really kind of depends on what your biggest struggle is. Uh, I find that most people have one out of three that is their worst issue. Um, for time blindness, you’re going to want to really, really rely on Alarms and notifications as much as you can, and it’s a tricky balancing act, because if you have too many notifications, you’re going to just ignore them and send them away.

Right? Um, and if you have too few, you’re going to wind up missing, missing, uh, whatever it is that you’re trying to reach. So you really want to try to find a happy medium where it is annoying you. But it’s not stopping you from noticing it. But kind of, um, kind of like what I mentioned with kids, the best way to do it is to set it at certain intervals.

So not to give yourself like, you know, four or five of them, but to say, okay, uh, I’m going to have something that’s going to remind me that I need to leave the house in 30 minutes, something that’s going to remind me that I need to leave the house in 15, something that’s going to remind me in five, and then something that’s going to remind me, like, when I need to get my shoes on, right?

Right. Because basically what that’s doing is stopping you from being too involved in whatever it is that you’re doing. Um, another huge, huge, um, favorite of mine, and I hope I’m saying this correctly because I always get the two mixed up. I believe it’s haptic feedback is the term I’m looking for.

Yes.

Which is feedback on the outside of the body. That is also something that I’m a huge fan of. I know that everybody has access to like an Apple watch or whatever Samsung’s version is. I think it’s a Galaxy watch is what it’s called or something like that. But if you can get that, if you can have a way to have some sort of vibration on your arm, that’s going to kind of shake you out of it or something that’s going to make you feel when it’s time to pull out, that is going to be extremely helpful.

And you’re going to find that you’re, you’re not going to miss quite as many things. And it’s a huge help for Time Blindness. Um, For Executive Dysfunction, Executive Dysfunction is something more that you have to work with, rather than against. Um, some people really are just like, how do I force myself to do this thing?

And, I’m here to tell you that depending on the situation, sometimes you’re just not going to be able to force yourself. You’re just going to have to tell yourself, I will try again tomorrow. Um, Some things that help making sure that you are kind of already telling yourself in your head or setting that intention in your head that you are going to be spending energy on whatever that thing is.

If you can tell yourself the night before or the day of, today I have to X. Sometimes it’s a little bit easier because then your brain and your body already know I am going to be spending energy on this thing. It’s a lot worse when you don’t tell yourself this, going back to that warning, that warning system, right?

If you don’t warn yourself and you’re just suddenly like, I should vacuum the living room, your body’s going to be like, I didn’t put aside energy for that. I don’t feel like it. And then you’re just not going to do it. Um, so that helps. Keeping in mind, I am a huge, uh, proponent of the I C N U acronym, which stands for Interest, Challenge, Novelty or Newness, and Urgency.

Those are the four things that ADHD brains respond to. And if one of those four things is not part of it, or if all of those four things are not part of what you’re trying to do, your brain won’t do it. It doesn’t want to. So, you have to ask yourself, am I interested in this? Is this challenging for me? Is this new or boring, which one is it, is it urgent, and then you want to try to find a way to add at least one of those four things.

Generally, if you can do that, um, and, and there are all types of ways I could go into this forever, but if you can add something to what you’re trying to do, there’s a good chance that your brain is going to let you move towards it. Uh, and, and the last thing that I would suggest is trying to break it down into small pieces.

And a lot of people will roll their eyes at this and go, Oh, I try that all the time. And it’s okay. How small a piece? How small a piece? Because I’m talking teeny tiny, if you have to, like, if you’re writing a report. Okay. And you’re like, write report. And then you’re like, well, I broke it down to research.

First draft. Second draft. Edit or first draft, edit second draft. And then third draft. That’s too big. I mean, tiny. I mean, you break it down so that the very first draft, like when you say research, you’re like, research X, research Y, research Z, and then do one of those tasks. And if you’re like, I still can’t get started, then it’s not small enough.

Make it smaller. I don’t care if you come out of it saying, all right, all I did was, uh. Pick a font and my margins, you did something, then you did something. And the whole point is to make you feel like you did something. And then sometimes that’s enough to kick you in a high gear and you’re like, yeah, that’s not enough.

I really want to continue. And you’ll do two or three things. And sometimes you’ll find that you do that font thing and you’re like. I’m done, I’m finished, I have more tomorrow and that’s fine because you still touched whatever it was that you needed to do. And usually with ADHD brains, if all you did was pick a font and you’re done, it’s not urgent.

So you’re not, you don’t have to like get upset that you didn’t get it done today.

Those are the things that I would say would help with those issues when it comes to time management.

It’s a big hefty issue that we have, so it’s not exactly the shortest, but that’s what we have.

Right. Do I understand it correctly that urgency is, is a trigger that will allow you to succeed?

Or we’ll stumble.

Absolutely. Absolutely. Urgency is probably the most successful trigger, so to speak, for ADHD brains that I have come across. If you can make something seem urgent, it’s part of the reason why every single one of my clients does an amazing job at work, but life, life stuff that they want to get done, they don’t get it done because at work they have a boss hanging over them.

They have deadlines. They have people relying on them. So they have things that make it so that this thing that is sitting in their lap cannot sit in their lap forever. Whereas they go home, and is there really anybody standing over them to get them to fold the laundry? No. So the laundry just gets to sit there for a month and maybe move from the bed to the chair to the chair to the floor to the floor to the bed.

Right. And that’s it, right? So, yeah, urgency is… Urgency is, is probably the most helpful one. If you can inject it into what you do in a way that works, it pretty much works every time.

Well, my husband and I have joked our entire married life that I just need someone to come visit because then I could get this room cleaned up and it’s true, but if I could figure out a way to psych myself into thinking that someone was coming, then maybe I can keep things picked up a little bit better.

There you go. Exactly.

That adrenaline surge that comes with it isn’t that healthy either, though, to always live in that mindset.

Yeah. And you could also play with it actually. And, uh, even a reward systems can work sometimes towards urgency. If the reward is something that has a specific time. So if you’re like, yeah, you know, we’re all going to go to ice cream at six o’clock, but I got to have this done by then, or I can’t go.

You know, as long as the ice cream is actually something you really want, obviously, if you don’t really care about ice cream or you’re lactose intolerant, then that’s not a smart choice, but like, you know, or I’m going to go visit a friend, something like that, where other people are relying on you at a certain time of day is another way to use that urgency.

So, you know, maybe you can’t force someone to come over, but maybe you could go to someone else’s house, or maybe you could go, uh, run an errand you’ve really wanted to go do, or maybe go see a movie that you’ve really wanted to go see something that’s going to force you. To think about things in terms of time and in terms of that urgency, right?

Yeah. Well, cause, cause the black holes are huge and you can just get lost in them. My son’s in college now, he’s almost 21. Um, but he has for years told us that time is the enemy. It’s if, if, if people could just forget time. And just do what they said they were going to do when it happens, life would be so much easier and it’s, but he has identified that is, that is his biggest barrier is time and it’s, and you’re talking about the, the time blindness.

Time blindness.

That’s the perfect description of what he’s trying to describe.

I think with that, it’s very hard.

It is because anytime anyone gets upset, it’s always had, it’s, it’s to the point where we have to do it now because it’s taken hours to get to this point and we have made no progress. So, so yeah, so we, we have a lot of those conversations around here.

So I’m always curious whenever I talk to someone and we’ve, I’ve asked this question about a lot of different situations, but, um, but I’m always curious about the myths, the misunderstandings, the misconceptions that come with different conditions that we face. And ADHD is one that so many families are affected by this.

Um, but I think we still have a lot of misconceptions that are tied to it. Can you share some of the ones that come to mind for you?

Uh, probably the biggest is that you have to be hyperactive to have ADHD. Uh, the, actually the number one thing that made me finally go get diagnosed was the fact that I was constantly fatigued.

I was always tired and, um. I have been doing a lot of like checking into that and research on that. And, and there does seem to be a hormonal component to it. That’s very common in people with ADHD. But at the time I was checking on it because it turns out that ADHDers can just have fatigue because their brains tired them out because you spent so much time trying to catch up to your own thoughts and catch up to what your brain thinks you should be doing all day long that you just tire yourself out. Um, in fact, what you were describing about how, Oh, I go into a room to clean and I’m just immediately overwhelmed and I’m tired and I don’t want to do it anymore is kind of that same concept where your brain has already moved 10, 20 steps ahead.

And is looking at all the stuff that has to be done in the room and how much stuff is going to have to be finished. And you’re still here in, in the present time. And your brain has just said, Hey, so you’re going to have to do this and this and this and this and this and this. And the next thing you know, you’re like, ah, that, that sounds like a lot.

I don’t want to do it. I’m tired now. That’s when you quit. Right. So. That, um, was probably the most eye opening thing for me, because I came into this, uh, with a lot of the same misconceptions that a lot of people have. Um, I initially talked myself out of getting my son diagnosed because I was like, well, he can focus on video games.

So, you know, if he can focus on that, obviously he doesn’t have ADHD. When it just so happens that people with ADHD can absolutely focus, but they only can focus on things that grasp their attention. And then depending on how much it grasps their attention, they can focus and can’t do anything else. So you would have to remind them to go to the bathroom, to eat, to drink water because they’re so focused, right?

So it’s almost like a lot of people also assume, Oh, well, if I can focus on this book for four hours, then obviously I don’t have ADHD. And it’s like, okay, but how are you at balancing that focus? Like when you focus on that book, do you still remember to go pee? Or like, you know, does something have to happen to knock you out of it, to remind you to go?

Those are the things that you need to be paying attention to, right? It’s, it’s why it’s a disorder, because it causes disorder in your life. It’s, it’s, it’s not, and I guess I’m kind of getting ahead of myself, because the other thing that drives me nuts is when people say, Well, everybody loses things.

Everybody’s forgetful. Everybody’s a little ADHD and it’s like, no, everybody is not a little ADHD. The reason why this is called a disorder is because it causes disorder for us. If you’re just losing things every once in a while, you lost your keys last Thursday, but you haven’t done that, you know, very often, then I don’t think that you can call yourself ADHD.

Uh, ADHD er has the keys in their hand. And then three seconds later realizes the keys are not in their hand and don’t know where they went and feels like they blacked out and people will be like retrace your steps and you’re like, okay, but I don’t really remember what I just did. I don’t know. There’s a difference between, oh, I just, you know, I put my keys.

Um, on the counter and walked away and forgot about it. Ha ha.

And no, they’re inside the fridge.

Yeah, they’re on the counter because I wasn’t paying attention. I went and I got a soda and I like just put my keys in there and just completely blanked out and don’t remember. So you have to kind of understand too, that like everybody’s not a little ADHD.

Everybody has different things that they do that could connect, uh, to ADHD, sort of. But the difference between a disorder, and I say this all the time, okay, you lose things and you might not have ADHD. My hands hurt. Sometimes I don’t have arthritis. I get headaches, but I don’t get, you know, I do get migraines, but the point being I get a headache, but I could tell the difference between a headache and a migraine.

It’s the severity. So also trying to assume that, you know, well. I, I lose things sometimes and, uh, you were talking about something that bored me and I stopped paying attention. So I must have ADHD. It goes much deeper than that. It’s so much more nuanced, so much more nuanced. It drives me nuts.

But I think, I think some of those that you’re mentioning where they’re finding a commonality there, parents that are listening who don’t have ADHD use those pieces for that empathy that you were talking about earlier.

They can.

It’s not the same.

Honestly, no, it’s not, but it, it really has to do with how you decide to use it to your point. If you’re using it and you’re saying, Oh yeah, I could totally understand how frustrating it would be to have been walking down the hallway and the next thing I know, I don’t know where my left shoe went.

But if you’re turning it into a way to downplay what the other person’s going through, yeah, that’s a problem. Yeah. If you’re saying, well, I lose things all the time. Suck it up. Okay. Well then now you’ve made a mistake. Yeah. Now that’s, that’s not what that’s for. You’re misusing, you know, that moment.

Okay. I was referring to the understanding the frustration that one time that I happened to you, not the hundred times that I happened to your child, but at least you can maybe connect with it a little bit. You can connect the dots. I hadn’t even thought about the other side of the coin there.

Exactly.

So yeah, so it is always interesting because you’ve run across it, you’re seeing it with your son, you’ve, you’ve had some of it with yourself as well.

We’ve had teachers through the years where it was almost a battle at times trying to get them to understand that the preconceived idea that they have is inaccurate because there’s a reason behind the behavior. It’s not. And, and defiance is, is probably the biggest one that comes in there. Of course, my son also has narcolepsy, so his brain would be asleep some of the times, too.

So, so he had different reasons for, for having those, um, those projected, um, theories that were inaccurate. Maybe that’s the best way to put it. Um, one thing that I always hear, hear about is, you know, you, you, you hear about people talking about those who have ADHD have these superpowers and all. Um, so I want to go a little bit deeper in this question, but, um, but wanting to share a little bit too with my son, we do, we don’t necessarily call it a super power, but he definitely is, is fast brained and, and there are definite benefits that he’s found.

He’s, he’s a college baseball player. The, I mean, he, he’s waiting where the ball’s landing because he’s, he’s that far ahead of where his feet are even. Um, and you see a difference. And his level of play on someone else. So there are some areas where you can kind of streamline those skills that are there.

But can you talk about some of the potential strengths or unique abilities that, that you’ve noticed just through your coaching and through your experiences that those with ADHD may, may show?

Of course. Of course. Um, and I really do appreciate, I want to say that you did not use the super power thing. Um, because I feel.

No.

I, you know, cause I, I feel like, you know, just to go on a little side note here, I’m ADHD. You knew what this was, um, that I, I don’t really appreciate, and a lot of us don’t appreciate the superpower moniker because it feels like it’s kind of downplaying the struggles that we go through. And I know that some people will say, well, that’s not what it is.

We’re trying to look for the positive side. I’m like, okay, would you say that somebody going through depression, you’d be like, Hey, depression is a superpower. You wouldn’t do that, right? You wouldn’t say to somebody who has bipolar disorder, wow, bipolar is a superpower, even though, you know, sometimes when they’re manic, they’re, they’ve got like some things that they can do that maybe other people can’t.

Right.

No, you wouldn’t do that because the suffering is, is not something that you want to overshadow. So yeah, ADHD may have some things about it that are, that are kind of cool. And you know, I’ll go into this in a moment, but. Calling it a superpower to me is kind of infantilizing because it’s like, you know, oh, it’s the superpower and it’s like no There’s a lot of stuff.

That’s a problem. That’s why I have a job, you know what I mean? So

right, right,

but yeah, there there are things to definitely be to be proud of. I ADHDers by and large. I have not met one yet who is not creative and a lot of them will be like I’m not artistic at all. And that’s not what I’m saying. I’m saying that you’re creative. By creative I mean that you will be put in a work situation where you are being asked to do something that generally does not work with your brain, but out of pure necessity, you will figure out a creative way to make that, to make that job work for you, you’ll figure out efficiency, efficient, more efficient ways to make things make sense and to get things done because the way that they’ve suggested it to you just doesn’t work with work for you.

And. You will probably come up with ways that will impress people. We’ll, they’ll be like, wow, I didn’t think of it that way before.

Yeah.

Um, so, you know, by creative, yes, there are a lot of artists who I know who have ADHD. Sometimes at this point, if I meet another artist, I’m like, you, you just, I just assume at this point.

So don’t get me wrong. There is definitely like a lot of the artistic creativity, but I have absolutely met a number of ADHDers who are like, I can’t, I’m not really much of an artist who are still creative, who I’ll send off with an action plan. And they’ll come back having done what I asked them to do, just in a way I never thought that they’d do it.

And I’m like, yeah, I didn’t think of it that way. And they’ll go, Oh, did I do it wrong? No, you just did it different. And that is, that is such a cool thing. And, and probably one of my favorite things about people with ADHD, um, another one that, uh, I recently learned that I think is really cool is that ADHDers actually have a higher incidence of what’s called theta brain waves.

So theta brain waves are the, uh, waves that are responsible for calming us before sleep. And we tend to have those, especially in moments of crisis. And so people with ADHD, generally we tend to be kind of like anxious and perfectionist and, you know, when we don’t need to be. But if there is a crisis, we actually have a greater chance of being calm under pressure.

Interesting.

Because of those theta brainwaves. Yeah, so this was in, uh, I don’t remember the name of the study. I would have to look it up. Uh, and it was a smaller study. So, you know, if someone comes up and they’re like, they did a bigger study and you’re a liar, Arianna, then I’m not a liar. Okay. It was just, there was a different study.

Yes, there was a study, uh, that showed that people with ADHD did have a higher, uh, incidence of those theta brain waves. And it kept them calm under pressure, which was really cool. Yeah.

Um, if you, if you come across the study, send it to me and I’ll put it in the show notes.

I absolutely will. I absolutely will. I know exactly where I can find it.

I just don’t have it on me right now, but I will, I will send it to you so you can share it. Cause I think that’d be a really cool thing for people to read. Um, yeah, I think, uh, and you know, I think those things are extremely, are probably my two favorite things to be, to be proud of. We are very creative people and we are calm under pressure.

Um, we also tend to be very good at recognizing patterns, uh, to the point where sometimes we’ll, we’ll, we’ll make the mistake of being like, Oh, you’re psychic. And it’s like, Oh, I’m not psychic. I just recognize patterns. You know, you recognize behavioral patterns, um, especially as you get older to the point where you actually tend to be a little bit more intuitive than most people.

Um, and again, that’s not, you know, psychic. It’s just, you’ve, I’ve seen how people act and you have put that together to kind of be able to figure out, you know, I can’t tell you how many times I’ve had male friends who will be like, yeah, this girl, and she did this thing. And I’m like, you’re going to regret that.

Cause she’s going to X, Y, and Z. And then she does exactly what I said she was going to do. And they’re like, how did you know? And I’m like, I just, cause it’s a pattern, man. That’s just, it’s, it’s all patterns. It’s part of the reason why some of us are able to do really well in school without studying.

It’s not necessarily because, you know, again, not psychic, we’re not necessarily geniuses. It’s because we recognize that there’s a certain pattern to the class and patterns to the exam. The exam pulls from certain parts of the, uh, professor’s talk or certain parts of, uh, the book or whatever. And once we see that pattern, we just can roll into that pattern and pass the class.

And, you know, if nobody tells us that this is due to that, we’re like, oh, I’m a genius. I just don’t, I just don’t have to study. And then you wind up like me, where you have your first ever class where you actually do have to study and then you flunk it and you’re like, what happened? Am I not a genius anymore?

Only to realize that you never really were. It was just that you knew how. You knew those patterns. You could read those patterns really well. So interesting. Yeah, you got to be careful with that You know because that absolute power corrupts absolutely, but right very very It becomes very helpful in a lot of situations to be able to read those patterns.

So we were talking earlier about, um, Um, just some of the, um, maybe the chaos that can come with the disorganization, um, things like that. Um, and just some of the stress, like the fatigue that the brain’s going through with just the overwhelm that, that can come in.

Um, are there some effective self-care practices or habits that individuals with ADHD can incorporate into their lives?

Yeah. And that’s basically to make sure that you make time to do something that you really like, ah, every day. And I know that when people hear that, they tend to think, oh, well, that’s really difficult.

Easy for you to say. I work long hours. I work and it’s like, okay, if you can’t do every day, then do every other day. Do as often as you can. Um, and it doesn’t have to be anything big. Like, you know, maybe you really like racquetball and you can’t do racquetball every day, but we all have more passive, smaller things that we very much enjoy doing.

That we can make time for it, even if it’s just 10 minutes a day, right? Or even if it’s just going to bed early or, um, even if it’s just not doing anything. Sometimes there’s a joy and just getting to sit and stare at a wall with nobody asking you for anything for 10 minutes. It’s, it really doesn’t have to be anything crazy.

Uh, I try every single day. To allow myself to do at least one thing that I like doing. Sometimes it is mindless and it’s like watching people play video games on YouTube and coloring. Sometimes it’s reading. Sometimes it’s making a cup of tea and sitting out in the, in the, you know, while the rain is going.

Sometimes it’s playing video games. It doesn’t always have to be everything. It’s just one thing. And you would be surprised how often just allowing that one thing for yourself every day makes you feel so much better. Um, I can honestly say that there have been times where I’ve just been really excited about a project even.

And I’m like, I really want to do some research for this project, but I’m busy. That’s a perfect thing to do too, to say, okay, this little side project that I’m really excited about, I’m going to allow myself some time after dinner. After I finished this last thing that I can’t stand. And my gift to myself is that I’m going to sit here and I am going to just allow myself to hyper focus until the cows come home on this thing that I really like, right?

You just want to find something that really matters to you, that you really like to do. And it doesn’t have to be like a all encompassing passion, just something that you like to do and allow yourself to do it every day, every other day, every three days, how often, however often you have the time. Give yourself at least 10 minutes.

And one other thing that I have recently realized that I highly suggest is admitting when you don’t have it in you to do more and being okay with that. Guys, that is one of the happiest moments that I can, I can tell you in my life is when you take that pressure off of you to do something like when you’re like, oh man, I’ve got all these things to do.

I’ve got five things to do, six things to do, seven things to do. And I’m just so tired. The moment that you say, you know what? Today is not a day to get that stuff done. Today’s just not a day for that. Today is a day for me to just sit and read or sit and play on my phone. I don’t have to do that today.

The moment that you release yourself and give yourself that allowance. Oh my gosh, you have no idea. Or maybe you do. And if you do, you should be doing it more often when you need to, right? There is such a freeing feeling to that, you just feel so much more human, so those two things, you just incorporate those two things into your life, and I can promise, I can promise you, okay, I’d be willing to bet like my car, that that is going to automatically make you feel less stressed out and less like you’re not doing, and less dissatisfied.

With your everyday.

But I think just, um, giving yourself grace that you’re not always going to do everything that’s out there and it’s okay, like, like you’re saying, I think that’s as parents and I think as moms even more, well, I can’t speak for dads cause I’m not a dad, but for moms, I know it, a lot of times we take on that burden that we’re, we have this expectation, we have to do this, this, this and this.

And we’re so focused on our kids that when it comes to us, we feel guilty if we take that time for ourselves. So I think.

Absolutely.

You know, having that reminder, whether you have ADHD or not, parents that are listening, moms that are listening, remember that it, it is okay to take some time to yourself just to, to re, regroup and refuel so that you’re ready to give for the rest of it. Yeah.

I feel like a lot of us are saying this and there are, I hope, you know, anybody out there listening has heard it a million times because sometimes we have to hear it a million times to finally get the point, but absolutely, you know, using that cliche, you can’t pour from an empty cup. Like you really can’t.

And it’s very, very important. That you make sure that you are putting little bits in your cup every day, however bit, however you can.

Yeah. Yeah. This is, this has been great. If our listeners want to get in touch with you, what’s the best way for them to get in touch with you?

Um, you can check out my website at youradhdone.Com. Uh, I’m on Instagram as @thearibradford. Um, those are the two best ways. You can also watch my YouTube channel, which is also called The ADHDone channel.

That’s another one. Um, and that’s, that’s probably the best way to be honest with you. Those are three, the three best ways. And, um, yeah, I, I think that’s pretty much it.

We’ll put the links to all of those and the show notes so that anyone who is watching or listening, um, go to the show notes and you’ll be able to see the links, um, to all of hers and we’ll, we’ll, we’ll connect you YouTube as well on that.

Um, cool.

So the other thing I wanted to ask you about was, I know you have a big project coming up soon. Yeah. Um, but tell us what all you’re doing. Do you have a YouTube channel? You have a website? What are you doing through that? Um, if they want to know about coaching, are you open to coaching clients and, um, and then tell us about, about your event too.

Yeah. So I do have some, uh, one on one slots available. I do do classes. Uh, however, my classes are hold right now because in September we are doing the first Chase the Chaos digital summit. Uh, it is something that I came up with because I have very slowly yet quickly, I guess, learned that people with ADHD really, uh, especially people with ADHD, but maybe not just people with ADHD, uh, really come alive when they are allowed to focus on more than one thing at a time.

Um, the more that we are told to pick one thing and stick with it, the more burnt out we tend to feel. Thank you. Uh, and that’s just really not how everyone works. Not everyone can just focus on one thing. Some of us love to have four or five different projects going on. And, uh, especially for women, I feel that there is this feeling of flakiness.

That there is this feeling of, uh, I shouldn’t be doing this unless it’s making me money. Um, and it leads to a lot of us kind of feeling like we are not, uh, we’re not productive, or like, what we’re interested in and what we’re trying to do isn’t worth the time and energy, and we’re just silly for wanting to give that time and energy, and that’s just not fair, and it’s not true, and there are not enough spaces out there for women who want to focus on multiple things and who like to do multiple things and who might have a business here and a side business here and then like three hobbies over here. We just don’t have enough room enough places for that. So I decided to make a place for that. And that is what Chase the Chaos is. It is for those of us who have that, you know, you use the term chaos either those of us earlier, those of us who have that chaos, uh, but we like it and we just really would like to learn to embrace it.

That is what Chase the Chaos is. Um, it’s a, and it’s a great summit. I’ve put together this list of speakers, myself, all of them. Uh, we’ve got psychotherapists, we’ve got divorce counselors, we’ve got, um, people who have gone through their entire lives, learning how to kind of mesh this stuff together and, and to integrate, to become full people.

We have 12 of them speaking over two days. And this is something that I believe in very strongly, and I really would love to bring you guys along on that adventure. So, uh, I will make sure that I send Tonya the link, and you should totally get a ticket. Um, our early bird pricing is ending August 15th, so that is when the prices will go up.

So, if you’re coming, probably best to get your ticket now. Uh, and I will also send the link for this. We have a Facebook group as well. For you, even if you haven’t bought your ticket yet, uh, you can still go ahead and join the group and kind of become part of a greater community that hopefully will continue to grow for those of us who, who need to be able to, to talk to other people about the 9, 000 things that we’re doing and how that’s totally, completely okay.

So will the Facebook group continue to go after the summit?

Yes. Uh, the plan is to have it going in between summits. Just as long as everybody needs it.

Nice. How often do you think you’ll run the summit?

Probably once a year. The, that’s the idea right now. Uh, we are starting out digitally, but the hope is that in the next two to three years we can start doing in person stuff.

It really depends on the growth. So hopefully if the growth continues, we’ll be able to, we’ll be able to start seeing each other face to face. That’d be great.

Yeah. I love, I love the, the name that. That that you’ve chosen. It’s

thank you.

It is perfect. All right, so you have some one-on-one slots, we’ve got the website that’ll tell everything that you’re doing. I’m assuming. And then do they go to the website for this or this is a different link?

So they can go to the website for it. I do have a section that says ADHD friendly classes and events But if you just want to go straight to getting the ticket, I will send you the link for that as well, so people can just go straight to getting your ticket if that’s what they would prefer.

Excellent. And then the early bird ends August 15th, but it’s not too late to still buy after that. It’s just…

Absolutely. Right. After that, you still can. It’ll just be more expensive.

Right. Okay. Great. Well, that’s, that’s, that’s exciting. So, um, and if you’re listening and you attend the summit, I’d love to hear some of your feedback afterwards on that too.

So we can.

As would I.

I’ll pass it on to you.

Arianna, thank you. Thank you for spending the time with me today. This is, this has been really informative. I’ve enjoyed the conversation. Um, and it’s, it’s, it’s one of those topics that I haven’t really been able to dig into as much as I’d like to. So, um, so I really appreciate you coming in, um, to, to share your expertise with us today.

Well, I really appreciate you having me, this was great. Thank you.

The post Episode #70: ADHD Coach’s Secrets: Empowering Special Needs Parents for Success appeared first on Water Prairie.