Water Prairie Chronicles Podcast

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Are you a parent of a special needs child facing divorce? Tonya has a powerful conversation about special needs families in divorce with Mary Ann Hughes, a certified special needs divorce coach and expert.

In this episode, Mary Ann shares invaluable insights and practical advice on navigating the unique challenges of special needs families in divorce. Discover how to:

Don’t miss this informative and empowering episode!

(** The information contained in this interview is not legal advice and is for entertainment purposes only. **)

#divorcehelp #divorcetips #specialneedsdivorce

Connect with Mary Ann:

Check out the NEW Water Prairie Prayer Journal for Parents! https://amzn.to/3TDBIO5

Check out this interview with Todd and Kristen Evans on how to strengthen your marriage: https://youtu.be/UwPWwM5FHE0

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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/

Mary Ann Hughes is the proud mother of sons on the autism spectrum. After her divorce journey where she successfully advocated for her children’s needs, Mary Ann started Special Family Transitions to help families navigate the overwhelm and complexities of special needs divorce to get the best possible outcome, with as little time, money, and stress as possible. Combining her experience and certifications as a Certified Special Needs Divorce & Transition Coach, Mediator, CoDirector of the Special Needs Chapter of the National Association of Divorce Professionals, LoneStar LEND Fellow, MBA with business experience in Fortune 100 companies, and years of special needs advocacy, Mary Ann is committed to help guide families with loved ones with disabilities through divorce challenges.

Full Transcript of Interview:

Mary Ann: So just know that, um, no matter what, you’ll be okay and your kids will be okay, and you’re not alone.

Tonya: Let’s face it, raising a child with special needs is an incredible journey, but it can also put a strain on even the strongest relationships. And when divorce enters the picture, those challenges can feel insurmountable.

Welcome to the Water Prairie Chronicles, a podcast for special needs parents. I’m your host, Tonya Wollum, and I’m glad you’re here. In this episode, I’m joined by Mary Ann Hughes, the owner of Special Family Transitions, who will share her expertise and personal experiences to help you navigate the emotional and logistical hurdles of divorce while ensuring the well being of your child with special needs.

The information contained in this interview is not legal advice and is for entertainment purposes only.

Mary Ann, welcome to Water Prairie.

Thank you, Tonya. So happy to be here today.

When you and I first started communicating on a possible topic, it was one that I realized, I think, I think yours was the one that, that, that came in that made me think, you know, we’re really hitting some hot topics this year.

We’ve had, um, Well, we’ve talked about grief, we’ve talked about loss, we’ve talked about some hard decisions that parents have to make. And because our target audience are special needs families, they’re already facing tough decisions daily with having to juggle medical appointments and schooling and just all the questions that come along, no matter what your child’s diagnosis may be.

And today we’re adding one more of those tough conversations, but I’m really excited that we’re able to dig deeper this year. And add some, some content that people may not normally want to talk about. It it’s, it’s not easy. It’s not easy and the best of situations. And before we go in too far, I did want to reference for any of our listeners that.

If you’re in a situation, if this, if the title of this got your attention, because you’re considering divorce or because you’re in the, in the throes of divorce right now, um, we’ve got some, some information coming that’s, that’s going to hopefully help guide you a little bit here. And Mary Ann is bringing in a wealth of expertise that’s going to be able to, to help give you some good information as we go and resources for you to follow up on afterwards.

But if you are not to that point yet. We have had a conversation with Todd and Kristen Evans about just how tough it is on the relationship on the marriage relationship when you have special needs children. So I’m going to link their. I’m going to be doing an interview here as well, and I’d encourage you to listen to that one and see if maybe you can get some pointers there to help strengthen your marriage.

If you’re not to, to this point yet, but that being said, Mary Ann, I really appreciate you coming in and being willing to be vulnerable with me today to, to talk about this and to help us give some hope and some strength to the path that some of our families may be following right now. So, thank you.

Thank you so much for the opportunity. Like you said, this is my passion, my calling now. I personally have been through a divorce, I have a mom of two children, now young adults on the opposite end of the autism spectrum. And so I personally have been through this and I know what it takes and how hard it can be and all those things you mentioned at the beginning, at their introduction, the loss, the grief, medical decisions, all that comes into play.

When you’re facing with a divorce and having to think about how to plan for you and for your kid’s future. So, and definitely I totally support, um, trying to work on your marriage if you can, but sometimes it’s beyond that point. So I’m here to support people when they are thinking about it or going through it or even afterwards.

There’s no right decision for anybody. Every. Situation is different. Every divorce is different. And what your life looks like after divorce is different too. But what influences that is how you handle yourself and the whole situation during divorce. That’s why it’s really important to come at this in a way where you’re thinking about the longterm, thinking about things strategically so that you and your child and even your ex can hopefully.

Have a good future going forward.

But I want to point out too, that this is a judgment free conversation. Listeners, no one is sitting here saying you shouldn’t be here. You shouldn’t have gotten yourself to this point. We, we are not coming, coming from that approach at all. So you should feel safe here.

And we want you to be able to, to gain information and to feel stronger by the time you finish listening to our conversation. If, if, if, if we’re doing, doing this, right. So, so to start out with. I thought we’d look a little bit at just the reality of what some of some of our families may be facing right now.

When we have special needs children, we worry about a lot of things. We worry about, as we mentioned before, their education, just their friendships, their inclusion and things. But, If we’re facing a relationship that is having a rough road, we’re also going to be worried about how that’s going to impact our children, our children who are walking in that and that typical path, but even more so our children with special needs.

So can you share some of the most common challenges that parents face during a special needs divorce and how those differ from a typical divorce?

Sure. It’s a great question. And so the first part of that is how do you share that information or break the news to your child that’s happening or in the process of happening.

I would suggest that They do receive advanced notice. I know sometimes one spouse may be caught off guard and so there is no advanced notice and and That, that happens a lot. And, but if you can, if you both work together and decide that divorce is going to be the best option for you, the marriage is not working out and that’s the decision you decide to go, then we want to kind of break that news slowly.

And sometimes when I reference a child, I’m referring to a neurodiverse kind of child. I might, like I said, my kid has autism, so I’m kind of taking that as an example, but it can work with children of any kind of ability or, or special challenge. And so, um. So if we can do this slowly, you know, we don’t want one parent, um, to be gone all of a sudden without any notice, we want to try to work to that, right?

Because that’s, that’s the hardest thing is one day they’re there and one day there’s not and there’s no explanation. So ideally, if they know it’s coming, you can have kind of build up to that and, and speak to them on their level. And one way I found that worked for my family is, um, to develop a social story.

So a lot of your districts may be familiar with social stories, have used them. At school or for Vacations or upcoming changes in routine. And so that’s the way that I introduced my kids at the time. I still call them kids. They’re now in their early twenties, but at the time they were a little bit younger and, um, I had to explain to them what was happening in a way that they can understand and try to make sense of it.

And so I did in a very positive fashion so that they knew that they’re still loved, but that’s a big concern for any kind of child, right? Any kind of divorce is they want to make sure that We don’t want them to feel responsible or that they had any reason behind that. Right. I mean, granted there’s a high rate of divorce among families that have a child with some kind of special need, but it’s not because of the child.

It’s because of the parents and issues related to that. So having said that, um, we want to make sure that. We present this in a way that they know that they’re loved. Both parents still love them and that things are just going to look different. We want to try to explain what those things are, right?

Here’s my, you know, we’re going to say, you say you’re living, you know, the home, say where your mom still lives. And if you have, um, if dad has a new place, we want to try to get pictures of that place. Ideally before the kids go there for the first time. So they know kind of what to expect, what that might look like.

If they have, uh, Um, a room there, what the room might look like, if maybe they can help decorate that room and make it feel like their home away from home. And it is that their home when they’re with the other parent. So we want to remember that, um, you know, a child, you know, is close hopefully to both parents and feels like they’re half mom and half dad.

So we don’t ever want to speak negatively about one parent because then the. The child may internalize that. So, um, so I had, so I created a social story, which is very helpful. I did get pictures and I kind of talked about what the routine, as much as I knew what that would look like. So they want to know what’s going to happen.

When am I with mom, when am I with dad? Am I going to be at the same school? Am I going to have my same friends? They want to know the basic things that we care about, kind of the, um, yeah. You know, Maslow’s higher care needs. What are, you know, basic shelter, food and clothing. Why am I going to have what I need as a child?

And then the other things you can work on as well. But I developed a social story and they shared it at school with them and the teachers who want to involve teachers and community as well. So whether it’s teachers, therapists, other people that are close to them to kind of help reinforce. And support them through this process.

So we don’t want to do this in a vacuum where there’s a whole community takes a village. Um, so we want to, to, you know, rely on people who are there for us, maybe to step in for us or to support us as we’re going through this change. And one of the reasons I created the social story, I tried to get help for my kids, and it was really hot, hard to find a mental health professional.

Comfortable and knowledgeable about how to share this information with a child who’s not very maybe communicative or has behavior issues. And so I try all different ways. And finally, somebody said to me, you know, Mary Ann, what do you do? When you have a change, and there is a change for your kids that you have to explain.

And that’s one way back to the social story, which I’ve used when I went on vacation to try to prepare them so that the change wouldn’t be as scary. They knew what to expect. So it’s kind of same thing, I guess, in this scenario,

I like, I like the idea of using the social story and our kids who are on the spectrum, a lot of times have used social stories, but even kids who aren’t,

and may not have used the social story before, parents, that is a great tool that you can use with my kids. We used that type of thing before we had a major move. And, um, and even when my daughter, who’s, who’s the oldest, when we moved her out of the crib into the toddler bed, we had a story for her because it was, it was a major transition for her.

There was security in that bed and it was, you know, It was a big one for her. So, um, so I, I, I think that that’s a great practical idea for, for any of our parents. So even if you aren’t familiar with it, um, We can, we can put some resources in the notes for you too, if you, if you don’t know how to, how to put that together.

Um, one thing I was thinking too, is that we’re talking about parents who have been advocating for their children everywhere up to this point. So, most of our parents should have pretty strong advocacy skills going into, to this and, and hopefully it’s not a major conflict. It’s, it’s an amicable. Situation, but it isn’t always.

So how can those skills be used effectively to advocate for the child’s needs? If it’s a high conflict divorce.

I love that question because that what that is, that was my mission and my divorce to advocate for my kids. And that’s why I teach my clients and that’s how I’m seeing it kind of sets me apart.

Is that obviously is kind of my biggest, um, strong point and what I stress to the parents I work with. So, so as you mentioned, as you, as a parent, you’re advocating for their school, for their therapies, whatever they might need in life. And so you’re doing the same thing in a divorce. And so whether it’s high conflict or even an amicable one, you want to try to think about what is, what are the child’s needs?

Don’t think just about right now, but think about what it would be in the long term. So say your child is 5, I know it’s hard to think about when they’re 15 and 25, but as much as you can, think about what they might need, where they might be in school, if they’re in a private program, how much that might cost, what are the therapies that they need, what is it that they need now, and then some things that they might need in the future, because we want to look at that as a whole and try to, if we can, put a cost to that, too.

Thanks. And how much of our time and what kind of other resources are needed so that when we’re talking about divorce and, and, you know, divorce, there’s a lot to it, right? A lot of emotion, but at the end of the day, it’s a legal and financial transaction. I hate to say it like that. It sounds kind of cold, but that’s what it ends up being.

We want to make it as positive an experience as we can, but at the day, that’s what. Um, the courts are going to want and judges and lawyers or how are we going to split up what we have and how are we going to support our kids, um, for the child’s best interest. And so it all works together. So we want to by putting the child 1st and their needs and what they’re going to need now and in the future and make a plan for that.

That’s going to hopefully, um, reduce some of the conflict in other areas in the divorce discussions and help you together plan for what that might look like for the child so that you can come to agreements in divorce. You can agree on what child support might look like. You can agree on what other types of supports, um, are going to be available.

What kind of decision making it be? What kind of. Possession schedule, uh, is best for that child. Not because somebody says I want 50, 50, but really what’s in the best interest of that child, where are they going to, um, you know, get the support they need on a day to day basis, not that both parents can’t, you know, provide, uh, play an important role in that.

But, um, depending on what’s been happening in the past and maybe make a plan for the future, we want to think about all those kinds of things.

But I like that, that you pointed out that our goal is what’s best for the child. That’s in all of our advocacy, it’s not. What rights do we have, but what’s best for the child.

And it’s not always going to look the same from family to family. So I think that’s, that’s, that’s a good point there. So you’ve, you’ve described some of this already, but just thinking through and, and as I’m coming in, I haven’t personally experienced this, but I have watched it happen with many friends and family as well.

And it’s, it’s never easy. It’s always overwhelming. Um, And I’m thinking even more so when you’re dealing with one or more children who have extra needs that are part of that. So what are some strategies that parents can take on to help manage that emotional side of it all?

Sure. Well, first of all, you have to manage your own emotions.

Right, you can’t take care of your children if you’re not in a good place to do that. So part of the advocacy and part of the self care, which is a big component of this as well, is, as I was saying, you can’t pour from an empty cup. So you have to be in a good place, um, to make good decisions in your divorce and taking care of the kids.

So if you’re stressed and worry about the divorce and what life is going to look like, that’s going to, You’re rebuffing your kids, right? During their, when they’re with you, because um, taking care of kids with special needs and abilities is a, can be a full time job in itself, but so is a divorce, right?

If you’re in the, in the heat and thick of it. And so you want to be able to, um, kind of differentiate those and, and hopefully have divorce have discussions when the kids aren’t home, right, listening to that, because they can hear everything we’re saying, even if they don’t speak or they’re not verbal, they can understand, they sense the stress we’re under and the tones and so on.

So we want to try to shield the kids as much as we can from that. Um, so if you can, um, you know, talk about social stories, but if you can find someone to support them, a mental health professional, if you’re able to do that, that’s for yourself and for your kids, that’s great. Um, there’s things you can do to help with the transition, having maybe set schedules, having a calendar that you can refer to.

Um, sometimes instead of calling it, you know, X number of days with mom and dad, call it we’re going to have number X number of sleeps, right? Three sleeps at mom’s until we go to dad’s and two sleeps at dad’s or whatever that might be. So make it a level that they can understand and you want to have, give them an opportunity to express themselves as well.

They’re going through a lot of, changes and maybe confusion, understanding kind of what’s happening. So we want to make sure that we hear them and what they have to share and their concerns and try to address them as best we can. Um, once I call, I did a project once about this whole, this whole area. And the psychologist said, we’ll have a special play time for the kids.

No matter what age they are, they, they need time with that, with that parent, with each parent, hopefully, um, to just have some relaxed time, no rules and let them. This whatever happens happens during that time, right? If they want to have the lead in a game or an activity or a discussion, then we want to Um, you know, respect that time.

The other thing I wanted to ask about are, cause you’ve, you’ve walked with, with other families through this. So you have reference points that I don’t have, and I’m sure you’ve seen some positive and some negatives and without disclosing anything personal of what you’ve seen specifically, are there some missteps that parents can avoid through this process that, that you’ve seen that maybe you have some advice on being able to help them maybe navigate around those. Those steps, does that make any sense?

Sure, for sure. Yeah, there’s a lot of things that people do that maybe aren’t the best choice. Um, and so as an example, um, when people think of divorce, sometimes the first thing they think to do is to go run out.

And when you’re in a frame of mind where you’re not thinking rationally and not thinking about the good of everybody, you may not choose either the right attorney or the right kind of situation or the right kind of strategy to go forward. Um, what I would suggest is maybe before you make any drastic decisions or quickly come to a decision, then maybe seek out somebody who can help you think through kind of what’s happening to you, whether it’s a mental health professional or a divorce coach.

So I’m a, now a certified special needs divorce coach. So that means is, uh, that’s my specialty and I can help people kind of think about all the things that they, they need to. Consider as they’re, as they’re going forward. And so, you know, you want to think about what’s important to you and what’s going to be important in your future and sort of thinking about those things and maybe pull all the other things together as well, you know, documents and start having conversations about what you want life to look like for you and for your child before you get to an attorney.

And so that way, when you meet with an attorney, you’ll have a. Um, you can ex share better your perspective and then have them kind of take your lead as opposed to you taking their lead.

Would you recommend that, because I’m, I’m assuming that the first time that meet with, that you meet with an attorney, you’re going by yourself. Would you recommend that they take a friend or someone with them as another set of ears?

You could. I mean, a lot of, um, lawyers will offer consultations sometimes for a fee, sometimes for free. And so, yeah, it definitely, um, helps to take somebody if you can, um, to be kind of an impartial person and maybe share things that maybe you forget to say, or if you’ve talked obviously ahead of time, you kind of maybe have written down and have thought through some of these things.

So, yeah, lawyers are there to help you and they provide the legal structure and the strategies and ways. to support you and advocate for you. Um, but you also want to make sure that you’re working with an attorney who understands special needs divorce considerations. There’s a lot who don’t. They say they’ve maybe had some here and there.

Really what’s important in a divorce involving a child with any kind of disability is making sure that you’re finding attorney and other professionals as well on your team who understand what it takes to be successful, what that child needs, and what you’re going to need. As part of that process, and so there’s a lot of things that I won’t go into a whole lot of detail here, but financially, you’ve got to set things up so that your child is not at risk of losing or not being eligible either now or in the future for government benefits, for instance, so you have to have somebody that understands that and that language and working with people who can protect you, help protect you and your child through the process.

We’ve had conversations in the past about some of those benefits. We have some others this season coming on. So parents, if that’s new to you, look back on those because that is an important piece of planning on your child’s future. And we’re talking about planning that far in advance. In this, in this situation, the other thing, as I’m thinking through, like, because the reason I ask about the question of whether you would take someone with you or not, I’m just thinking about how emotionally vulnerable you might be at that moment and, and just like going into a diagnosis in a doctor’s office, sometimes you’re not going to think of everything that you need to ask or that you want to ask.

So in a second, for me, I would probably, Okay. Need somebody there to kind of help either that or have a whole list of on paper that I have to follow of all of my, my, my checkpoints that I wanted to talk through. But thinking that on that same route, same line of thought, um, sometimes I know that going through your, you’re so focused on within the family at the time and all these other things that are going on to help walk through the process of the divorce, that You might isolate a little bit from from your normal support group.

That’s there Do you have any tips for parents on how to maintain those networks? Excuse me while they’re going through and after the divorce.

Right. Yeah. So like you said, this is a very emotionally difficult time, and we’re not thinking at our best. And so that’s part of what I do is go for help you go from the emotional side of divorce to like the, to the business side, how to make better decisions in divorce.

So definitely that’s what I’m here to do, but you know, we can’t, we can’t do it alone. We need our support community. Whether it’s our church, and even then there may not, you know, may or may not be people there who understand and support you and can help you through that process. Um, there’s divorce support groups, uh, there’s online Facebook and online groups that, that can offer a lot of support and insights for people who have been through it as well.

There’s in person communities, so yeah, definitely, um, I’m happy to share suggestions, but there’s, yeah, definitely find a group that you can connect with. Whether it’s in person or online, because yeah, they’re going to be there, support you, encourage you, and maybe share things that maybe you didn’t think about, um, as well, you need to ask for or be doing a plan for, for your kids.

This season, I’ve been asking each of my guests to pass on some advice to our listeners through a series of open ended statements. And. Marian and I’ve talked about this. She’s agreed to, to participate in this. So I have four for you if you’re up for that many. Um, so I’m going to read the statement and then I’m going to have you repeat the statement and finish it.

However, you feel led to finish it. So the first one that I have for you is every parent of a special needs child going through a divorce should know that.

Every parent going through a divorce, uh, should know that, We need to think about not just the short term, but the long term. We talked a little bit about that, um, but we need to think about how those will be addressed.

How is it going to affect all the family members and what we can do, um, to make it as amicable a process as possible. that we can, but yes, think of what they call a life care plan for that child. Some people want to think that, you know, divorce is over, child support ends at 18, and then that we’re done.

Well, that’s not really the case because, uh, depending on your state, um, you may have, uh, child support that goes longer than that. There’s, even if you don’t, and some states have indefinite meaning lifelong child support, but even if you don’t, you can still come to an agreement. Um, based on what’s for that child and your family, what’s going to work out.

So hopefully you can plan together and work together to make that happen.

All right. So when a special needs child is involved in a divorce, the most important thing to remember is?

I say the most important thing is to take things slowly. We don’t want to rush ourselves or rush our kids through this and force things upon anybody when they’re not ready.

Um, so. And so, yeah, we talked about how transitioning is hard. So we want to help find ways to help our kids transition, whether it’s through social stories. And by the way, I mentioned earlier, I did create a YouTube video about that. So happy to link that to your resources. That’s how to do that in this divorce situation.

Um, but yeah, so, you know, find ways to give structure to this so that, um, the kids don’t feel like they’re alone or that there’s. That they don’t have anyone to turn to, that there’s ways that we’re all going to get through this together and life will be okay afterwards.

All right. So the third one, the best way to minimize the impact of divorce on a child with special needs is to

The way to minimize the impact is to think about the child first.

We talked a little bit about that. So we want to be as child centered as we can a divorce. We don’t want this to be situation where it’s a win lose or I get my way and you’re going to suffer. And there’s a lot of emotion behind divorce, a lot of reasons for divorce. And so we want to think though, think strategically in all this, what are, what are the effects of decisions and things that we say and do, uh, in the short term, as well as our future relationship.

And how this divorce is going to end up. So there’s, um, there’s a system out there is a person who asked about high conflict earlier. There’s a person from the high conflict Institute has a communication system called BIFF, B I F F. So it stands for brief, informative, friendly, and firm. So we don’t want to get so wrapped up in emotion that we’re just yelling and going on and on and not, um, saying things succinctly, professionally.

Um, so that the other side, uh, also feels respected and heard. So we want to, uh, make sure that everyone, um, shares what they need to share, but do it in a way that is going to promote the discussion and the result that you’re trying to get.

All right. So the final one, no matter how difficult things seem, parents going through a special needs divorce should never give up on.

We never want to give up on your child or on yourself or on your future. All right. So, you know, child may be having a hard time or you may feel like you need to advocate for what your kid is going through or needs. So there’s a lot of times when the parents have different view of the child’s disability and the severity and what that may mean for them.

Uh, sometimes it’s, you know, like you said about the grief, they’re still in the grief cycle and not fully accepting that child’s diagnosis. And so we want to show really, uh, how that, that disability is impacting the child and how we can help that child to get what they need and be, and reach the best of their ability that they can, and so as a, as a parent advocating for a child in divorce, we want to show, uh, the services they need, the people they need, and what those things might cost to effectively advocate, but we want to also look at ourselves and remember that divorce is a finite process.

Some people think it’s, you know, you’re done with divorce and you’re done. Well, yeah, it will end one day. So it may seem like it takes forever. Some, some divorces do take years if there’s a lot of contention involved, but one day it will end and we want to think about our life after divorce. What’s it going to be?

What’s your next step? What new opportunities await for you. And so we want to have that kind of as a guiding light in our divorce. Not to say divorce is the end and things are going to be terrible, but no, we want to get beyond that. And it takes time to heal and get over the emotion of it. And they, some people say it takes up to three years really to fully, um, heal and, and move on.

But, but no, there is an end point in, in your life after divorce can even be better than it was, um, as you’re going through it, even, even more better than you can imagine. I mean, I’m a different person than I was when During my marriage and during my divorce. And so I’m here now, learn from it. And I’m now able to help other people see the opportunities that lay ahead of them as well.

Well said advice there. I appreciate you sharing all of that with us. So before we go, I want to give you a chance to, you mentioned that you are a coach, but tell us more about what you do, what your business is and how they can get in touch with you.

Sure. So, so when I went through my divorce, it took quite a bit of time, quite a bit of money, and quite a bit of emotional stress. And so with the incidence of divorce as high as it is for special needs families, I thought it’s kind of silly for everyone to have to recreate the wheel and go through what I went through. And so I decided, okay, well, I’m going to help other people based on what I’ve learned.

I’m going to take certifications away to do to be effective. Effectively help other people. So I started my company called Special Family Transitions, and I’m now, um, a Certified Special Needs Divorce Coach. So what that means is I’ve gone through the Certified Divorce Coach program, and there’s an extra certification.

That’s a special needs one that I actually help inspire and create as well. So now I’m so glad that there are people out there who understand, who, um, can Connect you with other resources and can actually help, um. Educate and share things with your, the rest of the other members of your team that may or may not be familiar with what we need to do to become successful on a special needs divorce of lots of other certifications to, I even became a mediator recently and a parent coordinator, because I think there’s lots of opportunities for parents to work together.

So as a divorce coach, I have to, uh, pretty much working with one parent to help them advocate and help them support them through the process. But in my other roles, I can have work together with both parents. Um, so say it’s a more amicable situation, like you said, there’s some that are more high conflict and need more help and some where like, okay, this is what we want to do.

Let’s work together to get there. And so I can help facilitate that as well.

I like, I like that option too. And, um, it’d be nice if all families could go through mediation and not have the conflict, but I know reality is sometimes that, that isn’t possible, but, um, but it’s gotta be rewarding to be able to be in that, in that role.

For sure. And I’m also educating other mediators about that other, you know, that those ways to get through the situation didn’t have to be a high conflict situation. Um, you know, once again, it’s about the child’s needs and how can we work on that together? And so, yeah, I’m active. I share information on social media.

Um, and I, uh, also work one on one with, with, with families and also even create a little mini course about how to have success in a special needs divorce. So I’m here no matter what your needs are, I’m here to support you and connect you with resources as well. You asked if I support other people just to share information.

It definitely either reach out to me on social media. Or happy to do a complimentary consultation, let you learn about your situation and share about maybe how I can help as well.

And on social media, which platforms are you on and is your, um, tag Special Family Transitions?

Yes, exactly. I’m Special Family Transitions on all the platforms.

I’m on Facebook is where I’m most active, but I’m also on Instagram. Uh, on YouTube, I have a YouTube channel and I’m even on Tik TOK as well. So yeah, whatever your style is, reach out to me either way. And so, um, yeah, the easiest way probably is to go to my website, which is, uh, www.specialfamilytransitions.com. And over there they can find a contact form, send me an email. And there’s also links to my social media channels there.

Okay. Good. So we’ll, we’ll link your website and, um, your Facebook link and then also your, your YouTube channel because you had mentioned the social stories there. So Mary Ann, thank you for spending the time with me on this.

I have a better understanding now of what families may need to be thinking through.

Sure. Thank you so much, Tonya. I appreciate the opportunity. So just know that, um, no matter what, you’ll be okay and your kids will be okay. And you’re not alone.

I appreciate Mary Ann sharing her knowledge with us today.

If you know of a family facing a possible divorce, please consider sharing this video with them and look for ways you can help support their family. No one wants to go through a divorce, and if you’re in a relationship that can be salvaged, I highly recommend that you check out my interview with Todd and Kristen Evans, and get the support you need to work on strengthening your marriage.

Thanks for joining me today. I’ll see you next time.

The post Episode #109: Strategies for Special Needs Families in Divorce appeared first on Water Prairie.

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Are you struggling to understand how to help your child talk about emotions? Does your neurodivergent child experience really BIG emotions? Discover the revolutionary BELLYFLIES Method, a powerful tool designed to help children, especially those with neurodiversity, express their feelings and navigate emotional challenges.

In this insightful podcast episode, join Tonya Wollum as she interviews Cathy Gagliardi, the creator of the BELLYFLIES Method. Learn how this innovative approach can:

Whether your child has a neurodivergent condition or simply experiences big emotions, the BELLYFLIES Method offers valuable insights and practical tools to empower them and foster emotional well-being. Don’t miss this enlightening episode!

Connect with Cathy:

View the BELLYFLIES book on Amazon: https://amzn.to/3ZkPZCU

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Cathy Gagliardi, a children’s author from the Hamilton, Ontario region, discovered the therapeutic power of writing and began letting her words flow onto the page. Inspired by the growing anxieties children face today, Cathy created the YumYum book series. Through lovable characters like YumYum the alligator, her stories address topics like social-emotional challenges and celebrating differences. Cathy’s books empower children with coping strategies and encourage them to shine in their own unique way.

Full Transcript of Interview:

108 final

Tonya: Have you ever felt butterflies in your stomach when you were feeling nervous? Do you think you could explain what that feeling means to a young child? Well, today’s guest, Cathy Gagliardi, a children’s book author from Ontario, knows how important it is to help children learn to communicate their feelings, and has come up with a way to do just that.

Welcome to the Water Prairie Chronicles, a podcast for special needs parents. I’m your host, Tonya Wollum, and I’m glad you’re here.

Cathy and I have been talking together for, I, I thought it had been close to a year. You were saying that you think it was fall of ’23. Um, it seems like we’ve been going back and forth for a while and we met on, through social media, I believe is how we first ran into each other.

I think so. And I saw BELLYFLIES and that caught my attention. And then, um, then we exchanged some emails and I wanted to know more. So before we go any further, can you tell us what BELLYFLIES is all about?

Cathy: Yes, I can. It’s so nice to be here with you. Thank you for having me. Um, BELLYFLIES is butterflies in your stomach.

Many years ago, I had a situation where, um, I was working with an amazing woman, Karen. And, um, we spent the whole day laughing about our kids, talking about them. The next day, I found out that her son had taken his life. And it was devastating. It just blew my mind and I didn’t know how to help her. I didn’t know what to do and how could this happen.

And, um, I went through, uh, so many different emotions as everybody else did. That was in at work there. And I, I went home to my kids and I felt. That there should have been something I could do for her, but I had to be my mom, a mom and you know, take care of my kids and everything. And then when they went to bed and then when I went to bed, I couldn’t sleep.

So I came downstairs and I started, um, putting a pen to paper and writing, which I did often when I couldn’t sleep. So I started writing and I thought, how can I help children when they’re very little? To have tips and techniques as they get older and just keep using them so that, so they’re like ingrained in their brain of what to do when they have emotions and feelings that they can’t control, that they can’t get through.

It just debilitates them. So I wrote a book called BELLYFLIES, and it was with an alligator, who’s a stuffed animal that comes to life, and his friend Billy. And they talk about butterflies in your stomach, and they call them BELLYFLIES. And so there’s tips and techniques for the children to do to overcome and end up with BELLYFLIES.

Mommy, look, I have no more BELLYFLIES and therapists and teachers and schools bought my books and a lot of parents, but I found that there was a missing section. There was something missing and I really needed to get my techniques across or my ideas or my, uh, support across to the parents so that they could help their children.

So from there, I created the BELLYFLIES Method. which has the tips and techniques for the parents to Communicate with their children, the neurodiverse children.

And there’s such a need for that today.

I know.

It, um, it just seems like more and more a lot, a lot of our kids, especially our older kids came through the COVID time and it has affected them in a lot of ways.

But even with social media, there’s just, there’s so many triggers out there with, um, not always some positive environments that our kids can land in.

Right. And they know so much. They have so much information that it’s scary for them.

So you mentioned that you’re focusing on neurodivergent children. And I saw, I saw a note, I don’t know if it was an email that we had with each other or if it was on your website that I saw that you were, um, giving a voice to your neurodivergent children.

Am I remembering that correct?

Yes. It’s, it’s, um, give it, giving children a voice is, um, my main goal, my, a goal that will help to, for them to discuss their emotions and their feelings and their needs. Okay. without, um, confusion, you know, so basically if they’re in school and something happens and they come home and their parents say, how was your day?

And they say, yeah, it was good. Yeah. Or I don’t know, whatever, because it’s so much, it’s such a big thing. Right. And, um, but they don’t, they’re not acting right. They’re not acting as they normally do. And in this case, a child could say, Well, I don’t know what’s wrong with me, something, but I had BELLYFLIES.

So the, that’s cause start a conversation and it could bring them, you know, like, uh, what made you happy today? What made you sad today? And it could bring the answer to them. So yeah, I, I was picked on at school. Eventually that information will get out. And there’s a child’s voice that originally, you it wouldn’t be there.

It just is too much for them to pinpoint. And maybe they don’t even know, because I know sometimes I have feelings that I don’t know what it is. And so that’s what I say, I have BELLYFLIES. And, um, you have to just think about, okay, what brought this out? But a child would not know that they wouldn’t be able to, um, pinpoint.

They may not be able to pinpoint what it is, or they may not be able to communicate it. So when they say, I have BELLYFLIES, you know, okay, this is a great time for a conversation or, uh, let’s sit down and draw or, you know, somehow get the information out of them.

I like your idea of giving them just, even if the child doesn’t say it, maybe a parent being able to ask, would you have some BELLYFLIES?

Yes. Yeah.

Because now you’ve talked about it beforehand. You know what that is.

Yeah. I found that children, um, They were, they were adopting this, I have BELLYFLIES, into their families. And sometimes, um, one boy came up to me and he said, You know, my dad had BELLYFLIES the other day. And I said, Oh, did he tell you that? He says, No, I told him that.

That’s a huge emotional comprehension too, to be able to transfer that to, to what, you know, that not just kids have this feeling, adults can too. We, we gave one example already as far as how, how they can, you can ask on that or, or, you know, being able to talk a little bit. What are some other things that parents can do to kind of help their kids start to talk about these things?

Well, I have the BELLYFLIES method and it’s an acronym, BELLYFLIES is an acronym. I’ll go through that quickly, B is for BELLYFLIES, E is for ENGAGE EMOTIONS, L is for LISTENING, the next L is LOVE, the Y is for YES AND, the F is for FOCUS, LEAD, I is for IMAGINATION, E is for ENCOURAGE, and S is for SENSITIVE.

That’s my BELLYFLIES method in a little nutshell there.

From what you shared, even though we said that we were looking at neurodivergent children, there’s no child that would not benefit from using this method. So, so it’s a tool that parents could use no matter who their child may be and um, could help maybe ease some tension in some families by going, by going through this.

Well, I, I want to go into our advice section, but I want to ask you another question before we get there. And we didn’t talk about this ahead of time, but you have. You have other books too, and one of them, Gonna Build a Boat, and I love the name of that, of that story. I haven’t read it, but I did want to ask you, that book is looking at compassion and inclusion, is that correct?

Am I remembering correctly? Um, how can parents use that book to, um, to teach their children about neurodiversity or embracing differences?

Well, that, that book I dedicated to my father, uh, who passed away, um, after I wrote my BELLYFLIES book. He, thankfully he got to see it and he was so proud, but, um, he, he had a business and he had, Everybody, every kind of person in that business working together.

And I always thought that that was pretty special how he included everybody. And he, um, he, he thought of you as you could do anything you never thought, Oh yeah, you can’t do it. So nevermind you. No, no, no, no. He just built you right up to that. You could do anything. And he built boats. He built catamarans and trimarans.

And I, so I put that in the story and in the story, it shows how people can come together. It shows how to love yourself and how to love each other and how to understand and listen. So there’s a little girl in there that has depression and they understand and they listen and they include her. And then there’s a, uh, a little boy who’s in a wheelchair, doesn’t matter.

You get on the beach and let’s build that boat anyway, and you’re going on it. You know, like everybody, everybody’s included and everybody can do the job, do a job, anything. They could do the job and they can participate together and, um, have the reward of accomplishing something together as a team. And it just, uh, it’s just, it’s a way for everybody to realize that there, the differences are all really, um, stars.

They’re all shiny stars. When you find, I’ve always found when I was growing up that if I found someone who was different in a certain way, it was just like a star shining in my face. I needed to be with them. So, um, I find that, that, that book. Teachers really like that because it includes everybody and it teaches them to work together and, and listen and love and love themselves as well.

Be proud of what they’re doing. And, um, parents too. So I think that, um, that book came out to be more than I ever expected it to be.

I, I like the fact that it has the physical, um, differences represented, because a lot of our kids have a hard time finding themselves in children’s stories. And, um, and so it is nice that you have that.

Just the, the inclusion part of everyone. I speak a lot on inclusion when I go on other podcasts, even, and it, it’s something that we can’t say it enough that, that everyone should be part of. And I liked the way that you’ve done this. They’re not just being. Included on the edges, they’re being brought in and they’re part of building that boat.

Whatever their part is, they’re part of it and um, and that’s, that’s what inclusion is to me.

Yeah. And that it, it truly represents my dad also.

Nice. Nice. What a great role model for you. Oh, so good. Yeah. Thank you. All right. So we’re going to run out of time. So I want to jump into this. Um, we, this listeners, if this is your first time listening, you’re, you’re not aware of this, but I’ve been asking my guests this, this season to leave you with some bits of advice by completing some open ended statements that I’m going to give them.

And Cathy has agreed to do this with me. So I have four of them for her and I’m going to read it and I’m going to have you repeat it and finish it for me. Right. So the first one that I have for you is the most important thing I’ve learned about empowering children with neurodiversity is.

The most important thing I’ve learned about empowering children with neurodiversity is that they have a voice and they want to speak and they need to, and they need to know that they’re, uh, that they can express their feelings and their needs.

And we’re here to listen to them. Um, I think they have to feel like they can move ahead things as well. So, um, not that they’re different, but that they’re special and they’re not alone. So, I, I’ve learned that these people are so special. I mean, everybody I have met is so unique and so special. Um, that I could just see sparks, you know, they’re just growing and blossoming all the time.

Yeah. I want them to know that.

So the second, um, statement that I have for you is, I wish every parent of a special needs child knew that…

Uh, I wish every parent of a I have a special needs child, knew that, that there was help and that they’re not alone and that they are champions. I, I wish that they had the BELLYFLIES Method, um, to guide them and help them and, and, um, uh, but I could mentor them and, and their children.

And, um, just to know that there’s. That they don’t have to be frustrated, like alone, that they, there’s help out there. I know that if I had this BELLYFLIES Method when my children were growing up, man, it would have been very helpful to me.

And it’s true because, you know, parents are just surviving sometimes.

And to have, you know, we, we, we always joke and generations have joked about how there’s, there’s no playbook for being a parent. No one knows how to do this. And if you have more than one child, you know that. It changes from every child anyway. They all need their own little user’s manual to come, to come with them, but we don’t have that.

But to have a guideline like, like you’ve described with the BELLYFLIES Method, it gives you a mental process that you can think through to help yourself calm and to be able to approach things and to help your child be able to respond to communicate too.

Yeah. I think that, um, the parents, um, are needed to calm, be calm because at that same time, the child needs them the most.

So when they’re trying to deal with everything, the child also needs that. So.

And it’s usually just before dinner when everyone’s hungry, everyone’s stressed, everyone’s tired.

Yeah. Everyone wants it right now. Whatever everything is. Yes, anything is. They want it right now. Yes. I know.

All right. So number three.

One thing that surprised me about the impact of my books has been…

Oh, one thing that surprised me about the impact of my books is how, uh, uh, effective the words “I have bellyflies” is. I can’t, I couldn’t believe how it just took off and children were using that and the teachers and parents and therapists and, um, the, the schools, they, they was becoming a saying that, um, they could grasp onto and use that.

And, and my other books, they all have children, um, learning to love themselves most importantly, but everything else as well, um, compassion and, and, um, Growing together and, um, do accomplishing things together and having a little adventure. So yeah, that, that having, being able to say I have BELLYFLIES and then being able to say no more BELLYFLIES, that really surprised me because even though I wrote it for everybody, I didn’t, didn’t really think about my book getting out to everybody.

At that time it was a therapy for myself. And so when it started doing. What it needed to do, get out there. It really surprised me. It made me happy.

All right, so last one. My hope for the future of neurodivergent children is…

My hope for the future for neurodivergent children is that they know that they’re special, that they can live an emotionally healthy life, and they can take techniques that they learn into the future as they grow, and um, that there be less to zero suicides of anybody like that.

Um, hopefully that the neurodivergent children aren’t, aren’t considered, Um, special because we’re all special, but that they’re considered right on the track of a shining star.

Great advice on all of those. Thank you for sharing all of that. Before we go, I want you to, um, tell us, tell our listeners how they can get in touch with you, how they can find out more about the BELLYFLIES Method.

Um, And if you want to tell us about, about the books too, as far as how they can get copies of that.

Okay. Um, firstly, the BELLYFLIES Method. If you go to, um, bellyfliesmethod.com and put in your email address, I will send you three free episodes of the BELLYFLIES Method. and um, that to get you started on helping you out a bit.

And then if you choose to, um, be mentored or have, or have a coaching session through that, through my landing page, you can book an appointment with me. Also, um, if you want to contact me and talk, talk to me, you can reach me at [email protected] If you, if you just want to see where things are going or, or, uh, how I can help you, please let me know.

And also if you’re, here’s my BELLYFLIES book. Um, yeah, and this is, um, my brother illustrated this one. I illustrated the other ones because he was too busy. But, um, if you are interested in any of my books, um, I would, it would be best if you went to [email protected] and I can send you a book with a special message in it.

So we could talk about that even. And I would have to know the names of the children that you want to address it to. So um, so far we’re, we’re looking at having, uh, a newsletter coming out with little tips and, and information. And on the, in the back of my books also, I have, um, little coloring pages. So we’re going to have coloring pages on the newsletters also.

So how many books do you have? I have five and two in Spanish. So there’s seven books.

So if they look up your, your name on Amazon, they can see all of your books there?

Yes. Yes.

So I just want to clarify for our listeners. So what Cathy had shared earlier is, um, price wise, it might be better for you. If you contact her directly, um, you can see the books on Amazon and you can purchase them that way, but send her an email and compare it that way too.

And what she’s offering for you is that she will, um, autograph those books and write them to your child’s name. So, by purchasing them through her through the email you can, you can get it that way. If you buy it on Amazon, you won’t be able to do that. So, um, so you do have the choices, but, but that’s, that’s why she was, um, suggesting that, that you email her about it.

But, um, so they could either email you and ask for the, the list of the books, or they could go in and look at what they have on Amazon. And we’ll link all of that for you so that you can, I’ll at least find one of the books and link it so you can find her author page on Amazon. And then, um, and then we’ll put her email and the BELLYFLIES Method link as well so that you can, can get through with all of that.

So Kathy, thank you. This is, this has been really helpful information. I’m excited about what you’re doing with, with the BELLYFLIES Method. It’ll be, um, it’ll be a household, household. Phrase that, that we’re going to be hearing soon. Oh, I hope so. That would be so great. Thank you for having me. Oh, sure.

I’ve, I’ve enjoyed this. I, I appreciate you, you coming and spending the time and sharing with, with my listeners too.

Oh, me too.

Thanks for joining me today. I wonder how many of us will be using the term BELLYFLIES to describe emotions to kids now. Be sure to check out Cathy’s books. You can find the link to her book, BELLYFLIES, on Amazon in the show notes.

In our next episode, Mary Ann Hughes from Special Family Transitions will join me to talk about some of the complexities involved with divorce when children with disabilities are involved. She has some great tips on how to protect the children and make sure they don’t get lost in the shuffle of adult conflict.

I’ll see you next time.

The post Episode #108: How to Help Your Child Talk About Emotions appeared first on Water Prairie.

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Join us for an inspiring interview with Mary Harper, a psychotherapist, author, and disability advocate. Mary shares her personal experiences growing up with blind parents in the 20th century. Through her captivating storytelling, Mary takes you on a journey of challenges, triumphs, and unwavering love.

Learn about the unique experiences of raising a child with visual impairments, the importance of advocacy and inclusion, and how to foster independence in a child with disabilities. Discover the incredible strength and resilience that can emerge from even the most difficult circumstances.

Mary’s insights offer valuable advice for parents of blind children, providing guidance on overcoming challenges, supporting your child’s development, and creating a positive and inclusive environment.

Don’t miss this powerful and moving story that will leave you inspired and hopeful.

Connect with Mary:

Working With a Guide Dog: Episode #44

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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/

Mary Pieroni is a happily retired psychotherapist and author of The Sound of Her Voice: My Blind Parents’ Story. A native of Muncie, Indiana, she is a graduate of the University of Virginia and earned her Master’s in Social Work from the University of Houston.

She lives in Houston, Texas, where she rings in a handbell choir, finds new homes for old stuff, and often suffers from Feline Paralysis Syndrome. Her blind cat, Lily, loves to cuddle when she’s not creating mischief. Mary has two adult children and loves being a grandmother.

Full Transcript of Interview:

Mary: So as parents, especially back then, what do you do with a blind child? And I think now it’s almost the same way. Although now we’ve got a lot of

Tonya: What do you think it was like to grow up with blind parents in the middle of the 1900s? Can you imagine what childhood might have been like for those parents?

This is an episode you don’t want to miss. It will keep you on the edge of your seat and you won’t believe some of the stories you’re going to hear. Welcome to the Water Prairie Chronicles, a podcast for special needs parents. I’m your host, Tonya Wollum, and I’m glad you’re here. Today, my guest is Mary Harper, a retired psychotherapist and author of the book, The Sound of Her Voice, My Blind Parents’ Story.

Growing up with blind parents, Mary experienced firsthand the challenges faced by the blind community in the 1900s. Mary has a true gift of storytelling, and she kept me moving between concern for her family and enjoying a good laugh as I listened to her talk about her childhood. Her stories offer valuable information for today’s parents of blind and visually impaired children.

Now sit back and enjoy some great stories from Mary’s childhood memories. Stick around to the end to find out why she titled her book, The Sound of Her Voice. Well, Mary, welcome to Water Prairie.

Thank you for having me.

I’ve been looking forward to this one. I shared a little bit earlier with you that, um, that my daughter’s is visually impaired.

And when you first contacted me, I thought this, this is the, the interview I would love to have had. when I was a young mom trying to figure out some things just because I was always searching for someone I could talk to who could tell me that next step or what the future might be. And to help me know what questions I should be asking or when to not worry about it, not to ask questions anymore because, because you don’t know.

And a lot of our listeners are coming in from, from, from that point and they may have a child who’s visually impaired. And I think this can be very helpful for them to, um, to, to maybe get a better perspective or a different perspective than, than they have right now. So for our listeners who haven’t read your bio or haven’t, haven’t seen much about you, tell me, tell me about your parents.

Let’s start with that. And um, and we’ll, we’ll jump from there.

Okay, well, both of my parents were born in central Indiana within four months of each other, and both were born with glaucoma. This was back in 1913, 1914. So back then, there was absolutely nothing doctors could do to help cure or treat this glaucoma.

So, It was interesting to see when I was doing the research for my book, which is called The Sound of Her Voice, My Blind Parent Story, um, I realized that both, like two families, very different. One was a farm family. That was my mom’s family. They were very hardworking, very practical, good problem solvers.

Um, when they had my mother, Excuse me. She, the, they knew immediately there was something wrong with her eyes. The eyes were bulging and greatly enlarged. So, um, the doctor said, I think, I know what’s wrong, but I’m going to consult with, uh, a doctor I know in Indianapolis. That’s the big city back then. And word came back a few weeks later that, um, no, there’s nothing that could be done.

And. Most important advice they gave my parents was, or grandparents, was do not take, uh, spend a lot of money taking her around to different doctors because there’s nothing they can do. So that was one reaction. And I’ll, I’ll tell you a lot more about the other things, but the initial reaction was that.

And then on the other side with my father, he was born to Italian immigrant Uh, parents. Now, they, uh, were recently immigrated, uh, 10 years from my father, uh, grandfather, and about 5 years from my grandmother, um, so it was hard for them, you know, they’re in a new country, um, my grandmother didn’t speak that much English, and here she is just giving birth to a baby with also greatly enlarged eyes, and in 1914, what the heck do you do?

Playing into all that, it’s her Roman Catholic background. They’re very devout Catholics. So she did an awful lot of praying for miracles. She took my dad, she wouldn’t give up. She took my dad to all these different doctors and sometimes they would give them, uh, eyedrops, here, try this. This’ll make you feel better.

And it only hurt and he hated those eyedrops. I don’t blame him. Um, another doctor in, um, Indianapolis that she took him to said, oh, I can fix that. And so by surgery. So. He did a terrible job on that. And the sad story is that, um, my dad had a tiny bit of residual vision before that surgery. And, um, after the surgery, it was all gone.

So, um, yeah, and he told me the last and that’s when he was like, 3, 3 to 4, he was. Had a good memory. Um, his last memory was seeing the train cars. They live near a railroad yard, you know, where all the cars would be coming in and out. And there were on the siding was a coal train and there was black coal and snow on top of the black coal.

So he could see the white and the black, but. Not much else, but because it was so stark, he was able to see that. But then when that was gone, he was like, well, that’s gone. And it didn’t bother him any. He was busy playing with his older brother. His older brother took him under his wing and they did everything together.

And I mean everything back then. They did all kinds of stuff. Um, but I’ll get to that later. Back to my grandparents. So grandma still didn’t want to give up. Even after his sight was completely gone. She thought, well, okay, World War One is over. It’s safe to go back to Italy. I know the Italian doctors are better than the American doctors.

So she took the boys back to visit relatives and, um, and went to a doctor there and he said, I’m sorry, there’s nothing I can do. She still wouldn’t give up. So then it was time, in Italy, there’s all these shrines to the Virgin Mary, they’re little, pretty little boxes and stuff. So, a bunch of those, my dad had to kneel down and pray for his sight, and he was like, uh, well, okay, I’ll do that.

But, you know, he said, this is a waste of time, but his mother really, really wanted him to. Have that miracle. Then she took him up in the mountains to a faith healer and, um, the faith healer did all this incantation stuff. And my dad was just sort of sitting there rolling his eyes thinking this isn’t going to do anything, but he did it to please his mother.

And of course, none of that worked, but that’s the length that my grandmother. Would go to to do anything to, you know, get her boy to see. So, as parents, especially back then, what do you do with a blind child? And I think now it’s almost the same way. Although now we’ve got a lot of advantages for kids with vision problems.

And you’ve got computers, you’ve got tape recorders, you know, there’s so many different advances that my parents didn’t have a 100 years ago. So it was much harder for them, but on the other hand, when they finally were able to get up to the school for the blind in Indianapolis, it’s called the Indiana school for the blind.

Um, that’s where they met in the 4th grade. That’s when they learned Braille. They were taught so many life skills. And I think if nothing else, I feel sort of sad. Now, I may be really out of line here. I don’t think much is to be gained by mainstreaming. Blind kids, totally blind kids, into a classroom, especially if a teacher doesn’t know how to help a blind child.

Um, about a hundred years ago when my mom was in first grade, second grade, teachers didn’t know what to do with her. They said, well, you can’t see much, so you just sit in the back and look at some pictures if you can see those. And didn’t want to make any effort to educate her. My mom was bright. She wanted to learn.

But these teachers just didn’t know what to do, so they just did nothing. thing. Until she was lucky enough to get to Miss Starr. That was her favorite teacher. Miss Starr put her in the front row and helped her see the board, made big letters, and taught her. My mom could remember how to print. I even remember seeing some printing she did.

I’m like, wow, mom, I didn’t know you could print. So, she had a little bit of residual sight until she was 11 and at age 11 was gone, but the, the school for the blind was wonderful for my parents. Back then, it was interesting because the boys were on 1 side of the room and the girls were on the other side.

They did not. Mix at all. They had private, they had their own dining rooms. They had their own dorms. They had their own playgrounds. The boys and the girls couldn’t talk to each other. Absolutely not. You’re going down the hallway. No, you don’t talk to another boy. So, and you know why I think it was. Based I did a minor on a study on eugenics.

That was a heyday of eugenics, and they figured, Oh, my God, we can’t have blind children falling in love. They might want to get married and had their own children. And then we had more blind children around that certainly does not contribute to a perfect race. So, um, I think that was 1 reason why the school was so terrified of having any interaction.

They did have when they got to high school, um, I think 3 or so. Formal dances a year where the boys and the girls could be together, but they were strictly supervised, you know, that they were being watched every minute, but at least at that point, they could chat with each other. So, um, my parents devised a way my dad, I think, was the one who came up with the idea of ways of communicating with each other that if they’d gotten caught, that would have been highly embarrassing.

Uh, but, um, they, they weren’t caught and, um, their romance. Blossom through high school. Um, I mean, it was nothing terrible with ways of passing notes. Basically where they caught by today’s standards is really mild. You know, um, they were in, uh. A play a musical, I guess, and so they didn’t want to learn all the lines to be on a star on stage.

They were in the choir and they were happy with that. But during the rehearsal breaks, the boys had to be on 1 side and the girls were on the other. So mom dad actually said, hey, hey, Jane. This curtain behind the back wall, it goes down to the bottom. Nobody can see us back there. So they would meet behind the curtain and hold hands and whisper.

I mean, how sweet is that? So the story that I wrote in my book, The Sound of Her Voice, is a lot to do with their romance and how That gave up, but, you know, they had this dream. They wanted to live the American dream. They wanted to be married. They wanted to have a family. And I think so many kids have any kind of handicap or discouraged from that.

It’s like, Oh, you can’t possibly do that. Um, my mom was totally discouraged from doing anything around the house. Um, even in high school, they were taught some cooking for the girls. They were taught some sewing and now keep in mind, not everybody was completely blind at the school for the blind. There’s a whole lot of gradation of vision impairment, but, um, they, my mom knew how to crochet.

She did, made afghans for me and all kinds of fun stuff. And that shows you learn skills. But interestingly enough, back then the girls were not taught mobility. So. My mom never went anywhere with by herself ever. She went around the house. Fine. She was in the yard just fine, but I never saw her even go next door to my grandparents house when I was growing up.

She always had to have someone with her. Now, the boys, the boys were taught mobility. They were taught how to get around. They could go to downtown Indianapolis on the weekend and have fun. But the girls were much more carefully supervised and no, they couldn’t do anything really by themselves. So, it was interesting that they really expected the girls to stay home and be dependent on their family.

So. My mom knew some basic cooking skills. She’d get home from school and she’d say, hey, mom, I want to be able to, uh, cook something. She says, stay out of the kitchen. It’s too dangerous for you. You’re blind. You can’t see it. Now, she may have had, you know, back in the 20s and 30s. I’m sure they weren’t the safest, uh, cooking instruments, but still come on.

Mom was very careful and was smart enough to figure out, just give her a chance. And I think sometimes she was a little bit overprotected in that sense. But on the other hand, she always would say, growing up, she would say, Mary, your grandmother on my dad’s side, why she just grandma, all she does is spoil him.

She spoiled him all the time when he was little. And that’s just not good. He needs to learn how to do things for himself. And I’m like, Okay, mom, but my view could do everything for himself. You know, when you’re totally blind, it’s hard to know what to wear because what do you yeah, mom remembered everything.

She remember all of our clothes. She just memorized them and she did all the laundry, even though earlier in her marriage. Her mother in law, my grandmother said, well, you’re blind. You can’t see to do laundry. How can you see the do laundry? And of course, back then it was the old fashioned ringer tub and you had to switch around and bring it through.

And it was a lot of work. My mom just did all that. Um. She sort of just taught herself, but she’s very, very clean. And she’s very, very much aware that no matter what she did, she’s being judged. So she’s out in public with anybody. Oh, there’s Miss Peroni. She’s blind. She’s a blind lady and people would watch her and they would see her clothing and they would make She just didn’t want any controversy.

So every time we went out of the house, even if we’re going to the grocery store, mom took forever, she would have to change your dress. She put on a clean dress and then she’d comb her hair and put on a little makeup and put on her lipstick. And then she’d say, is my lipstick on straight? I’d say, yes, mom.

Well, do I have any spots on this dress? It was a clean dress, but she was worried it had spots. I said, look around. You know, you’re fine. You’re fine. My hair look okay? Yes, mom. But she was so worried about that because she can’t look into a mirror and see, uh, you know, what she looks like so that that was something different.

I mean, I’m sure most kids don’t, um, usually are not asked by their parents. Do I have a spot on my tie? You know, that kind of thing. But that was nothing for us. That’s just the way we grew up. Um, but then as far as, um, Interestingly enough, my, my mother would complain that my dad, Oh, he just doesn’t do anything for himself.

But he did, he had a seeing eye dog. He went everywhere anywhere he wanted. He was an attorney and, uh, had to do traveling for his job. So he would get on a plane and go with his dog someplace or go up to Washington, D. C. or Chicago. He was just. He was amazing. He just knew how to do all that. Um, he had a great memory.

So he knew every single street in Muncie, Indiana, you know, where all the stop signs were and all the stop lights. And we had a tandem bicycle. So when I’m little old enough, nine, 10, he would get in the back and he’d be the main peddler and I’d be the one on the front steering. And I think about it now, it’s like, Would I trust a 10 year old to ride me around on a bicycle?

Oh, and then sometimes you’d say, Mary, wasn’t that a stop sign back there? Weren’t we supposed to stop? I said, oh, yeah, dad, but there’s no cars coming. Well, you should obey the stop sign. Okay, dad, he knew everything like that. He was totally amazing. So, gosh, I’m rambling. So you have any other.

Yeah, I’m enjoying it. Yeah, no, this is good. But there’s, there’s a couple of things. Um, did you have other siblings then with, was it just you?

No, I’m the youngest of four. So my mom, um, had one child when, um, 1943 and then I came along 1953. So 10 years in between. And then there was two other children in between the 10 years. So yeah.

Did they, did, um, did your grandparents support your parents and their marriage?

Well, that’s interesting. Which set of grandparents, paternal or maternal?

I take it it was not the same.

You know, um, because they had much more interaction with my, uh, Italian grandparents, I think it was really hard for my mother because my maternal grandmother, No, paternal grandmother, the Italian grandma was very critical of my mother, and I don’t know why that was.

Mom was doing the very best she could, and she cooked, she cleaned, she did all the laundry, she did everything around the house, and yet she felt like her mother in law was always judging her. And, uh, again, when I was doing the research for this book, I started thinking and I was like, oh, maybe that’s why grandma never came to our house.

I don’t remember her ever in our house, maybe once or twice, but not much. And my mother never went next door. Uh, and she could have, she could have said, Mary, I want to go next door. Let’s walk over there. And that would not been any problem, but see, she couldn’t have done it by herself, but she didn’t want to, there’s a lot of history early on in their marriage.

And I think there was some bad blood there. And you add to this. This is where the cultural stuff comes in. My dad always felt like his parents sacrificed and worked so hard for him so that he could have the money to go to college. And then on to law school that he felt he owed them something. And so every night that he didn’t have a meeting to go to, he’s a community leader.

So he’s always busy. But, uh, He would go next door to visit his, his parents and sit down and just chat that drove my mother nuts because she’s been with these kids all day and working around the house and he goes over there and sits and chats and leaves her to get everybody to bed and get homework done.

And that just that, oh, I need to do that. And then I think later on at the end of my dad’s life, he realized what a stress that was. And I think he felt a little guilty about that, that he was always so torn between the gratitude and what he felt he owed his parents. And then His wife, but his wife always came in second, or at least she felt he did.

I can, I could see that, that being a conflict with him because yeah, with, with, with his, his feeling, but also having grown up as a blind child, his parents were probably more vested in his life than maybe his siblings even. So he may have had a different bond with them than he would have had otherwise.

Well, I think part of it is because she took him everywhere to try and save his site. And then they owned a confectionary store in downtown Muncie, Indiana, where they sold homemade candies, ice cream and sodas and that kind of thing. So. That was like a 12 hour day. My grandfather worked really hard. No, my grandmother also did.

Um, and my dad told stories, Oh, when I was young, I figured out the way to get there. And I would walk by myself down to the store and go see my dad. And I’m like, you went down there to get some candy. I didn’t know that. Uh, my dad just had an incredible mind for geography and he knew where all the curbs were the potholes and he would go by himself a lot of times.

So his mom would sometimes let him go and be independent. And other times, I think she smothered him a little bit. So it’s, I think it’s very easy to have conflicting feelings when you have a child with a handicap. On the one hand, you want to encourage independence, but on the other, oh, my God, he’s out there by himself.

He could get run over by a car or whatever. So. I can see it from a parent’s point of view, how hard it has to be to know where do you draw the line? And interestingly enough, my dad’s father was a little bit more liberal. Okay. So, um, my dad had a brother, only two children in this family. So his older brother, Charlie was three years older.

They went on so many adventures together. Uh, they, uh, my dad learned how to, um, swim in a gravel pit, which they got to by taking the train tracks and over the trestle, over the water. And, and my, my dad had lean. Yeah, I had to lean down. I said, Mario, you like lean down and listen on the tracks. Do you hear any train coming?

And my dad would lean over and put his ear to the rail and said, no, no, don’t hear anything coming. I mean, that kind of stuff. Um, and, and then there’s the story I also have in my book about, um, they were building a new YMCA just down the street from where they lived. Um, and so at that time, no fences or anything around, they just left their stuff there.

So, Charlie said, Hey, Mario, let’s go climb that. Let’s go climb up the YMCA. We can see, I’ll show you how tall it is. And dad says, oh, okay. So I start climbing up and literally, this is just a bare steel girders. Oh, wow. Yeah, they get way up to the top, which is, I think, like the 3rd or 4th floor and they’re sitting down and Charles said, just give me your hand Mario.

I’ll show you where to go. And I’m like, I can’t imagine that. It gives me the heebie jeebies just to think about it. And then Charlie says, hey, Mario, you want to know how high up we are? Dad says, oh, yeah. Yeah. So then. He coughs up this big gob of spit, and he spits it down there, and he has, he listens, and he hears it a long time later, splashing down in the basement.

And dad said, oh, we are up pretty high, because you can tell by the sound of that. But, um, you know, it’s that kind of stuff that they did, and they didn’t get into trouble for that. Uh, apparently a neighbor saw them, and Told their father, Anthony, and he said, Antonio, I saw your boys. They were on top of the, the why NCA there is under construction.

He said, Oh, well, how else is Mario going to learn if he doesn’t try some things? So.

Wow.

He never got punished for that. He was like, okay. So, uh, oh yeah. And then when they were older, teenagers. My grandparents took them back to Italy to visit relatives. The kids got bored. So they said, here’s some money get a train pass go around Italy. Have a good time.

Bye boys. We’re going to stay here and visit 17 and 14 or 15, maybe 18 and 15. it’s like, would you do that today? No, but they had quite the adventure going around Italy and surrounding areas. So. Lots of things that they did together was, um, fun and, and some of it, I don’t know if his parents knew about or if they didn’t.

I mean, my uncle at age 15, it was no driver’s licenses back then. So he hadn’t earned enough money picking up glass bottles from the side of the road out in the country where people would get drunk on moonshine. And then throw that down. This was during prohibition, obviously. So my uncle would pick them up and clean them out and sell them to some shady characters down by the ice cream shop.

And, uh, so he earns enough money to be able to buy this old jalopy. And he and my dad would go out for rides in it. Uh, and then he said, well, Mario, you want to learn how to drive? And he said, well, sure. So he taught my dad to drive. And that’s a pretty funny story with that too. So, uh, yeah. Dad was adventuresome.

He was up for just about anything.

So you were talking about the mobility training between your mom and your dad as far as how they were different. Did both of your parents learn to use a cane or did they use a cane?

Nope, never saw a cane with my mother. My dad, the only time I saw him with a cane was late in his life when his last seeing eye dog died.

And that afternoon, he asked me to take him to this, um, facility for the blind in Houston that sold, uh, canes. Canes. So that’s when he had a cane. He said, the only reason I want a cane is because at that time he was living in assisted living and there are all these older people around that may not hear him coming and he might not hear them and he didn’t want to run into them.

So he had it just to let people know that he’s there.

So did he use echolocation when he, okay, that’s, that’s what I was thinking is as adventurous as he was, he had to have a cane. The skill to be able to use that if he wasn’t using a cane.

He did that with, um, and we come in a building and I can still remember, you know, you’re a kid.

Sometimes you get a little embarrassed, but my dad would go in and it would be maybe a tall church, for example, and go, I can’t do it. Click with his tongue. And then he said, Oh, this is a tall ceiling, isn’t it? I said, yeah, it’s really up there, but he would always make clicking sounds.

Okay. Okay. So, and I, I haven’t met many people who are adept at that, but I know, I know there are still people today who prefer to, to just use the sounds and the cane to them.

Isn’t, isn’t that relevant, but, but you did say that he did use a seeing eye dog as well. So I’m thinking he’s traveling, what did you say to DC and to, he’s going into cities where he may not know the terrain.

Right. And I said, well, dad, what did you do when you were in unfamiliar cities? He said, Oh, well, I would just ask for directions down at the hotel desk clerk.

And they would tell me how to get where I wanted to go. And then he memorized. I don’t know how he knew so much of the maps. He knew every street in downtown Chicago, whenever he needed to go, he would memorize. So he just knew. And that’s for Google and, you know, and Google Maps, which I use all the time. I can’t imagine.

Today they can put it on voice and, and have it direct them going. So it’s, it’s, he, he, he probably wouldn’t have had the patience for it though.

Well, he liked gizmos. I can remember when tape recorders came out, you know, those little cassette little things. He loved those. And he, he joined a tape club that they would.

Uh, tell jokes and read things there or tell stories and then they’d pass it on to the next person in the group. And then that person would add to it. So they had fun doing that. He loved gizmos. My mom, not so much, uh, microwaves came out. What do I need a microwave for? I’m like, well, it’s faster to heat things up.

Well, I don’t need to be fast. I can just put it on the stove. Go for it, mom.

I love hearing the story here. I could, I could, could listen forever. So we’re going to have to have to get, get, get your book so I can read all of it. But, um, but for you, you children, so your dad’s out working, he’s traveling some, he’s in and out, he’s at the grandparents house, your mom’s there.

At home most of the time, it sounds like you, you did talk about her always wanting to, to, to look right whenever she left the house, did, um, did she have any criticism beyond how she looked, but in how she was raising children or whether she should have had children or not?

Oh, yeah, but, you know, I don’t think a lot of people told her face to face.

Um, uh, my sister told me once the story of when she was young. I wasn’t even born yet that she and my other my brother, who was like, 3 years younger than her, but they were riding a bus. How do you get anywhere when you’re blind? Well, you take the bus, uh, or walk. Sometimes people would offer a ride, but very rarely would my parents call up somebody and say, hey, can you take me somewhere?

Rarely. I don’t remember really any time anyway. So, they were on the bus going downtown to the doctor’s office and my mother overheard a couple of ladies and back talking about her and say. How does she do it? She’s got two children and she can’t see. And I just don’t know how she blah, blah, blah, blah, blah.

And they were not being particularly nice about it. And oh, my mom was apparently getting madder and madder and, and, and could see that and uh, luckily the bus came to their stop pretty soon and they were able to get off. It just pissed my mom off and I can understand that. People doubting you, judging you all the time and really what’s underlying a lot of that, um, especially how We were expected to behave and how we were dressed and how we had to be clean and really well behaved was she was very, very worried that someday somebody would report her to the Children’s Protective Services and they would take us away.

So And that is not an unrealistic fear. Um, there is a couple, I read a while ago, but it was within the past five years or so that this couple, the woman had, were blind and she had her baby, having a little difficulty time with breastfeeding. What new mother doesn’t have trouble breastfeeding? I mean, You gotta learn how to do that.

A nurse came in and saw this problem and she reports her to CPS, I take the baby away. I took this brand new baby away for like 6 to 8 months before they could finally prove that yes, they can take care of this child. Horrible! And this is in like 2017 or 18. And this is, so my mom was right on, she, she knew that there was, um, a possible leave that they could come and take us away.

And I’m like, okay, I’ll be good. I’ll be good.

Well and you wonder too, how much did she worry about her mother in law feeling that way too?

Yes. Things like, uh, my mother in law, or I mean, my grandmother said to my mom, well, you should still be ironing Mario’s shirts. That’s what a good wife does. My mom says, but this is a new permanent press.

It doesn’t need to be ironed. Well, a good wife will iron it. I’m like, oh my god, really? You know, my, and so, and then sometimes she would criticize my mom’s hair. So there was, you know, she wasn’t her favorite person.

Right, right. So while you’re While you’re growing up, and now you were the fourth, so she had some practice before you came along, but, but your, your memory is, is, is, is what you have to work with here.

How did your parents strike a balance between protecting you? From some of those comments and all, but still fostering independence for you as you were growing up.

I think they just realized that there was only so much they could do. You can’t protect your child from everything. So you have to, you know, if they have, I don’t remember people teasing me about my parents, not at all, pretty much just the opposite.

If I would be out with my dad, walk in and somebody came up and knew who he was and chatted with him. Um, there’s, oh, you’re so lucky to have such a wonderful man for a father and they would be effusive. So it wasn’t ever anything terribly negative about being the child. The only negative that I felt was being on display and people would stare at us.

Sometimes I was walking with my mom and my dad, the 3 of us going alongside on the sidewalk because. Say, my mom would be holding my left arm and then dad would be holding her left arm and may even have his dog with him. It was like a parade. And so I always felt like self conscious. Oh, people are staring.

I really hate that. Um, when I first wrote, um, started writing, I started off with my memoir and I titled it, um, Stop Staring, because I just hated people staring at me. And maybe that was just me, but it was that feeling that, what are you looking at? I mean, come on. Children I understand. Now, my dad did have, and it was understandable because he was scary looking.

He had one very big eye, very large eye. And the other one was just, Empty socket with a lid over it. So it was very strange. And that’s in the book of how it got that way, which is pretty awful, but he, he never would, excuse me, he never would get. Artificial eyes, like my mother did my mother was very aware of appearances and as soon as my sister came home from nursery school and said, somebody was teaching me about your eyes mom.

She said, that’s it. I’m going to go get my eyes done. So she, her eyes removed and was fitted for, um, artificial eyes. Interesting. Interesting. But my dad absolutely refused to have that surgery. So, so he did look unusual and a lot of people couldn’t tell that my mom was blind. You go to a restaurant and they’d hand two, two, uh, menus and one for me and my mom wouldn’t move and wouldn’t take the menu. So I said, Oh, we only need one.

So you were from a young, young age, you were working as a sighted guide already. You were, you were reading menus. You were doing things like that. Did, um, how did those types of experience shape who you became?

Well, I have a master’s in social work. I sort of feel like I’m a helper kind of person.

Right. Did you, did your siblings, did all, did all four of you embrace that part of life as just being a normal part of life?

Yeah, because what are the alternatives? I mean, we didn’t have any. That’s the way life was. Um, when you mean embrace, uh.

Well, did, did anyone, um, resent having to do that or?

Oh, yeah, of course.

Okay.

Sometimes as we got a little bit older, if we were, if we were We were getting ready to go somewhere and there may be three or four of us kids around and, um, we would point fingers at each other. If I didn’t want to walk with mom or dad, I’d point to my sibling and say, you do it and then they would do the same thing back to me.

Because after a while, you just want to be free. You just want to walk on your own and skip or do something and not have to have the pressure or the responsibility. Of having your parent, you know, along and, you know, we were taught from a very early age, 3, 4, 5, you always stop at a curb. You have to be aware of branches hanging down because you’d be in trouble.

If your mom got her head hit by branches or your dad. Um, so we had to be, uh, you know, always aware. And looking around, um, and stopping at curbs and watching out for, um, big curbs or short curbs or water around and said, Oh, mom, take a big step. Cause there’s water right here. So, you know, that’s different.

Most kids don’t experience that, but that’s just part of our life. And that’s what you do.

That’s interesting. Well, looking back, what advice would you give parents who are raising a child who’s visually impaired, like to, as far as helping, helping them to kind of know how to plan for the future and how to help their children?

I guess 1 of the 1st things is to be encouraging instead of saying, well, you can’t do this. You can’t do that emphasize what you can do, you know, of course, there may be something they can do. But I think that was what was so good about the school for the blind. They taught Braille because nowadays, I think there’s a lot of people that are blind that don’t know how to read Braille.

And braille was a very, very important tool. My dad had a bra, braille typewriter that he would take notes on in law school and also when he was working and through the I, I have it actually. He used it all his life. And my mother was also taught, and both of ’em were taught print typewriter, just the regular typewriters on how to touch type.

She would type letters so beautifully, maybe one or two errors in there. And that’s about it. And of course when I type, there’s about 500 errors. And I can see it’s just, hey, let’s work on what the child can do and be encouraging man. Because even though my mom was told so many times, oh, you can’t do something because you can’t see.

She just said, yes, I can. She taught herself basically how to cook when she finally got their own apartment and they were married. She found braille recipe books and read those cover to cover and taught herself basically how to cook that way. And she taught herself everything. And I’m just thinking, when I had my own children, mom, how did you change so many diapers?

And they were all cloth diapers back then and you washed them all. Oh, she got her fingers dirty.

Yeah. And, and it wasn’t an electric washing machine that she was. Pushing a button on.

Right. Although by the time I came along, yes, she had a good washing machine, I think, and a dryer by then. But yeah, it was not easy.

There were not paper diapers. That’s for sure. So, yeah, but she just was motivated. They both loved each other. They both wanted to have the American dream and they wanted us to. Live the American dream they wanted us to learn. It was very important to them to have pictures on the wall. We had a piano and on the piano where all our school pictures and, you know, the little boulders and sitting up so she wanted us to be normal.

She wanted always to make sure that the lights were on when it got dark. All those blind people, they don’t know it’s dark outside. So she knew about what time it was going to get dark. So she made sure the lights were on and then dabbed to be responsible for turning them off. Um, but you know, if you have a strong enough belief in yourself, which is nurtured by people around you, then you can do a lot.

Well, I’m, I’m just, I’m, I’m impressed with what. Especially your mom, your dad had those freedoms to get out and explore and to do things, but your mom, I mean, especially the time that we’re talking about when you children were growing up, it was, it was, there were a lot of expectations on, on mothers that were home and for her to learn how to care for the house, to keep it clean and safe for you.

And, and with that fear all along. That at any given day, someone may show up at her door and say, you’re unworthy. I can’t even imagine feeling that type of judgment that, I mean, it’s, it’s, it’s, it, it’s hard enough for any mom today, even looking back then, you know, we don’t, we don’t have to get up and put on our heels and our dress and our makeup and all.

What if we wake up with our baby? You know.

Yeah, but oh no, back then she wore, even to her dying day practically, she wore pantyhose. She wanted, she used to wear girdles, and she just thought that was very important. And like, okay mom, uh, and then when pantyhose came out, she was very happy to switch to those.

But, you know, she was always properly dressed, even in the house. It was very important to her. Um, yeah, she was active in the community, but not as active as my dad. She was, um, there’s a club there in Muncie called the optimist, optimist and optimist club and the men were the optimist and my dad was president of that and then she was president of her chapter a few times and active and I found I was doing research on newspapers.

com, which is my all time favorite place to go because you can spend hours reading old newspapers, which are Fascinating. Uh, there’s a picture I found, my mom was hosting a tea, and there were all these women dressed beautifully with their little pillbox hats, and there’s a big tea, I mean a punch bowl there, and, and I know half, at least half of those women, maybe all of them, wanted to come to our house to see what it looked like on the inside.

How did a blind woman keep her house? Now, we had a lot of rules because she knew that sometimes Becton people would just drop in. Absolutely you do not ever eat anywhere but the kitchen at the table. You don’t take food out in the living room. Oh, no, no, no. Because there could be crumbs there. She wouldn’t know it.

She couldn’t clean it. And somebody might drop in and see that. Well, that’s embarrassing. Uh, we had to be careful, uh, leaving nothing on the floor. We could play on the floor, but do not leave your toys on the floor. Um, I’d be playing over the side and mom will come in the room and I say, hey, mom, I’m over here.

Talking was very important saying I’m here or I’m leaving now, because if you, it’s embarrassing. It happens to me now with my partner. I’ll be thinking I’m talking to him and he’s not anywhere around. Like, where’d he go? Because I thought he was there. And in the same way for my parents, they’re talking to an empty room because they don’t know that we’re gone.

So, um. You know, it’s a lot more verbal. And if you’re more of a quieter person, you have to remember to talk and speak up. So, yeah, I would say, mom, I’m here playing on the floor and she’s okay. And she would walk around me because she knew I was there. But if she didn’t know I was there, she could trip on us.

She was very afraid of falling when my dad had seen my dogs, of course. Almost all the time growing up, I remember she absolutely would not let that dog run the house that when he was done for the day and been fed and taken out and done his business and did all that stuff that my dad would take him upstairs to the bedroom and tie him to, um, like one of those hook things and dog was perfectly happy lying down there and sleeping.

That was not a problem, but mom just didn’t want him around the house wandering because she was afraid she’d trip on him. Yeah, it’s a legitimate concern. It is. And I think the other part was a dog shed. If you have a dog wandering around the house, you have a lot more dog hair around. So it kept the house cleaner.

So, you know, that kind of stuff. Um, everything was in organized in certain spots, because if you think about it, if you put, if I were to go and put, you know, A pair of scissors or something, a can of whatever, and put it in the wrong place. And she wanted that. How would she find it? She’d have to go opening all the cabinets, all the drawers until she found it.

So it’s very annoying. So yes, we had to keep things right in their place.

Well, I’m going to transition now. This season I’ve been, um, finishing our interviews with us, a series of, um, open statements where you’re able to pass on some advice to our listeners. And so I normally just have a few, but I gave you five of them.

Are you, are you up, up, up for five of them?

I’ll, I’ll see what I can do.

All right. So I’m going to read it and then have you repeat it and finish the statement. There’s not a right or wrong answer here. It’s whatever you feel is appropriate at the time. So the first one, growing up with blind parents taught me the importance of…

Okay. Growing up with blind parents taught me the importance of. Listening, um, that’s probably the 1st thing comes to my mind. Um, they were really good about listening to us and they taught us how to listen, listening to everything from other people to birdsong. Um, most people don’t. Take the time or pay attention to their environment.

And I went on bird watching with a friend and she was just watching him. I said, oh, and talk, talk, talk, talk. Listen, there’s a bird out there. I want to hear that bird. Why? Because I want to hear the damn bird, you know, and people don’t understand that if they have their site, they don’t think about listening.

So they taught me importance. I think of listening and they were good listeners. To other people, people will call them and ask for advice. My mother had a friend who was also blind Mom, it’s Carrie again. And Carrie would mom sit down and just listen and chat with her a little bit. So people want to be heard.

And I think that’s one thing that I’ve learned from my parents.

Nice. All right. So the second one, I wish more people knew that parents raising blind children, I wish

more parents knew that parents raising blind children are stressed and feel alone and need companions. And the cool thing that I’ve noticed is that lately there’s Facebook groups for blind parents.

Um, And I think that’s awesome that they can use the computer to connect with other blind people. And someone says, well, how do you get a kid to take medicine or whatever? And that’s wonderful because my mom was just on her own. She had to figure it out or she would read about it. Uh, she read all the women’s ladies home journal and stuff, but still, uh, she was pretty isolated.

It wasn’t easy for her to get out and make friends.

The one thing that surprised me most about having blind parents was…

I was surprised that, um, people gave them so much attention when we were out, that people knew who we were, that, like, really, what, we’re, we’re just people, but. People thought that we were special.

In fact, oh, my goodness. When I did my research on my newspapers. com, I just typed in my dad’s name and there were over a 1000 mentions of my dad in the newspapers over the years, especially because he was a judge and anything he said in the courtroom judge sentence. So and so to jail for 8 days for.

Running, you know, whatever. So he was always in the paper and they would write, uh, articles about how wonderful he was. And I think, um, people might be more surprised to know that it wasn’t all rosy growing up with Lyme parents. It wasn’t easy. It was, um, frustrating at times. They couldn’t take his places.

I got to school and realized, oh, other people are going to go on summer vacations. They’re going in a car and I’m sitting here, you know, so I would compare myself. I didn’t know what really normal was until I started working. Watching television, like Father Knows Best or some of those stupid comedies on TV.

Uh, because I really didn’t know what was actually normal and what wasn’t.

Yeah, I think, I think you, you actually have answered that it with, with some, some good examples there. I was thinking back of part of your story too, um, with, because really the way it’s worded was a little bit unfair because why would you be surprised?

This was your life. You had nothing to compare it with where it happened, but, but looking back on it, you can, you can see the comparisons there. All right, let’s start. This is, this is the longest one. So let’s see if I can get it all out. And if you, if you reword it, that’s, that’s fine as well. If I could go back in time and tell my younger self, one thing about growing up with blind parents, it would be…

If I could go back in time and tell myself, uh, one thing about growing up with blind parents, it would be,

Be grateful because you’re going to learn a lot of lessons. You’re going to learn about empathy. You’re going to learn about, um, the world through someone else’s. Eyes and I say that meaning. Yes. I mean, we don’t My parents would say I see or watch out or something like that. And I didn’t think anything about it. I mean, that’s just they use the words for vision very commonly, but, um, the gifts that.

I would grow up to get, um, by having them and learning so much from them. And, um, in my later life, learning about patience I was pretty impatient for most of my life. And then when they were older and I was helping to care, give them, um, I’d like taking them to a doctor’s appointment. So my goodness, it would take forever.

For my mom to get ready for her, she couldn’t walk because she had terrible arthritis. And so finally she would get in the wheelchair and then I’d push her down. And then it would just take a long time to all the different steps just to get out. So I learned a lot of patience in that. And, you know, and I think, um, I try to, um, see the world through other people’s eyes and try to understand it from their point of view.

Um, because then when you can connect with someone on that level, They feel heard and they can relax a little bit.

Okay. Last one. My hope for the future of families with blind or visually impaired children is…

Ooh. My hope for the future for families with blind or visually impaired children is more research, more support, more, um, I was going to say Anyone with any kind of disability ends up staying home a lot.

And it’s hard because it’s hard to get out. Uh, my dad was real visible because he’d be walking to and from work or, you know, he was out and about and all that. But, um, there’s a lot of people that stay home almost all the time. They don’t get out. And parents, it is harder when you’ve got a little 1, that’s can’t see.

And it takes a while to, you know, Any kid anyway, get clothes on him and shoes and all that stuff. So it’s not easy, but I think having more support and more being more open, come on people. There’s nothing shameful in having an eye problem. And I think disability across the whole spectrum. There’s underneath it all sort of a shame.

I’m not normal. I’m not like everybody else. I’m not good enough. And I just hope that the world realizes that’s not true. And parents especially can say, hey, look, you did this. Good for you.

That’s the goal, I think, of a lot of us and a lot of our listeners will have as well because they’re, they’re, they’re living that many of them at a younger age right now with these young children, maybe during their child’s lifetime, we can see those changes happening.

There’s much more talk of inclusion right now, and advocacy is one thing, but inclusion is more important, and it’s not just being included, it’s being part of it. Being a valued member of that, that group.

And inviting them to parties, inviting them to doing different things. People don’t realize that kids, blind kids are, people need social lives too.

It’s just hard for them because you can’t. have a visual connection with that person. When you see that person, you’re not looking at them and within their eyes, for example, there’s ways around it. You just gotta be verbal.

And I love the example of your dad. He was well respected. Oh yeah. You know, he was in a voice of authority, but He was also in these groups and he did the same thing as my dad did, you know, and you know, maybe, maybe people talked about it a little bit because of visually how he looked different.

It doesn’t sound like that affected the level of respect and his acceptance.

No, not at all.

It also sounds like his personality was such that he didn’t really care. Just take him for who he is because this is who he is.

Right, right. And he was really outgoing. He memorized people’s voices and names. So if someone came up to him nine times out of ten, he would say, Hi, John.

Good to see you today. How are you? So he would remember if he heard the voice. But one other thing don’t ever do to a blind person, go up to him and say, I was with my dad when this happened. Hey, Mario, do you know who I am? And my dad, I could see he was getting mad. That big guy got real big. And I’m thinking, you’re in for it now, buddy.

You don’t, you don’t play games with my dad. And he says, no, I’m afraid I don’t. And the guy was a little embarrassed, I guess. But, and it was a short conversation because he said, okay, come on, let’s go. Rightfully so don’t play games with people like that.

You know, I am looking at our time. We’ve been, been talking for a while here and I want our listeners to hear how they can get in touch with you, how they can get their hands on your book.

Tell us, tell us a little, a little bit about the book, um, any other projects you have going on and how they can get in touch with you.

Okay, um, they can get in touch with me at my website. Uh, I have my email addresses. My name, Mary at Mary P. Harper. P is for Peroni. That’s my maiden name dot com. M. A. R. Y. P. H. A. R. P. E. R. dot com. And I’m, I love emails from people. So whether or not you read the book, if you have any questions, happy to answer them. Um, so please feel free to to contact me. Um, my website is www.marypharper.com. Uh, and I’m also on Facebook as a Mary Harper author, I think it is. Um, and the name of the book again is, um, the Sound of Her Voice, my Blind Parents’ Story, and it goes back, of course, to that fourth grade time.

Did I tell that story about how. That’s why it’s called The Sound of Her Voice? Uh, briefly, I’ll tell you fourth grade. My mom is there and, um, has to recite a poem. My dad’s across the aisle from her and she stands up and she recites this poem. While she’s reciting it, my dad memorizes it. He memorizes her voice.

He remembers, remembers every word and he plays it in his head during the hard times of his life, like when they were apart, when he was in law school or whatever. And he remembered that and I do tell it in the book, but suffice it to say, at the very end of his life, at the very, very last doctor appointment, he went to, he had cancer and, um, the doctor said, well, how did you meet your wife?

And so he tells a story and then he recites the poem that he had heard, like, 90, 80 some years before, and it was so, I like, dad, I didn’t know you knew that. So the sound was so important to him. And he remembered every word that she said. From 4th grade. Yeah. So it’s a love story. It’s a great story. And what am I working on now?

I’m just trying to get the word out. I have publicity is a deal for me and I’m a little bit shy. And so it’s real hard to, uh, figure out how to get the word out about the book, but the people who have read it love it. And they said, Oh, it’s so inspirational. And I said, Huh, interesting, because I never set out to write an inspirational book.

I thought if I was, had done that, I’d still be sitting here at the screen looking at blank because I don’t know how to write an inspirational book. How do you do that? But it just came out because their stories are so fantastic.

And where, where can they get the book?

Oh, sorry. Amazon, amazon. com, barnesandnoble. com. If you go to your regular local bookstore and ask them to order it for you, they will, uh, order it.

Okay, good. So we’ll put the links of how to, how to contact you and the Amazon link I can put on the website. So it’ll be, if you’re watching the video, it’ll be in the description. If you’re listening on the audio platforms, you may not be able to see the link on the show notes, but there’ll be a link to the webpage and the webpage has all of that as well.

So, um, so those that are listening, find it, click on it, order it and tell us, tell us what you think of it. We, we, we love, love to hear it. And if you have read the book, I would encourage you to leave a review for her because that’ll help her get the word out more. So I’m going to Amazon or wherever you’re getting it from and, and, and leave, leave your comments to help support it that way too.

Thank you. Thank you for sharing your story. This, this has been fun. I, um, I have this picture now of this, put it in quotes, happy little family under a lot of stress at times because of your, your mom’s, um, stress of having to fit in. But then just, I’m picturing your dad on the train, heading out to Chicago, heading out to DC.

At a time where that was not very common.

That’s right. Uh, oh, he went to the Democratic National Convention of 1940 up in, um, the, uh, Chicago area. And, and so that’s in the book too. I’ve been writing all these stories, he’s unbelievable of all of the things that he has done. Um, anyway, if you have any questions, please feel free to email me because I would love to, um, answer any questions.

Thank you, Mary, for joining me today.

My pleasure.

Thanks for joining me today. I hope you enjoyed hearing Mary’s stories as much as I did. Be sure to pick up her book and sign up for the Water Prairie newsletter for updates on inclusion and advocacy and discount codes for our Etsy shop. In our next episode, Kathy Gagliardi will join me to talk about giving our neurodivergent children a voice.

I’ll see you next time.

The post Episode #107: Can Blind People Be Good Parents? Advice for Parents of Blind Children appeared first on Water Prairie.

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This interview delves into the importance of inclusion and advocacy, focusing on personal experiences and practical strategies. Tonya Wollum, the host, and Aaron DeVries, a passionate advocate for inclusion, discuss the challenges and rewards of creating a more inclusive society.

Aaron shares his personal journey as a parent of a child with disabilities, highlighting the barriers he encountered in securing inclusive education and services. He emphasizes the significance of parental advocacy and the need for systemic changes within educational institutions.

Tonya and Aaron explore the practical aspects of inclusion, such as physical accessibility, societal attitudes, and the role of educators in fostering an inclusive environment. They discuss the importance of universal design for learning and the need for accessible communication.

The conversation also highlights the benefits of inclusion for the entire community, fostering diversity, empathy, and a more equitable society. Both Tonya and Aaron emphasize the power of individual advocacy and the importance of collective action in driving change.

Overall, the interview provides valuable insights into the challenges and opportunities for promoting inclusion. It serves as a call to action for individuals and communities to work together towards creating a more just and inclusive world.

Connect with Aaron:

How to Travel the World with a Wheelchair: Episode #60

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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/

Aaron DeVries is the founder of The Inclusive Dad, an organization whose mission is “Building stronger communities through inclusion.” His commitment to “Inclusion” is evidenced by the tattoo on his left arm. He is the father of two young adults. He was thrust into the world of disabilities and special education after his daughter was diagnosed with epilepsy and cerebral palsy at an early age. He has spent over 15 years advocating for inclusion for his daughter in school and the community. He has served on various boards and committees of disability related organizations. He has given two TEDx talks entitled “The Power of Inclusion” and “Unlocking Inclusion for People with Disabilities.”

Full Transcript of Interview:

Tonya: Can you imagine what it might look like if everyone around you felt valued, respected, and included? What would need to change for that to be a reality? I’m talking about no barriers for anyone where diversity is celebrated and differences are embraced. Welcome to the Water Prairie Chronicles, a podcast for special needs parents.

I’m your host, Tonya Wollum, and I’m glad you’re here. Today, we’re exploring the critical topic of inclusion and advocacy. Join us as we discuss the importance of creating a more inclusive society, the challenges faced by individuals with disabilities, and the powerful stories of those who are driving change.

Together, let’s break down barriers, build bridges, and foster a world where equity and equality are the norm. Back again this week is Aaron DeVries. We first met Aaron in our last episode when he told us about his daughter, Cece, and shared some of the stories of parenting a child with epilepsy and cerebral palsy.

Aaron, welcome back to Water Prairie.

Aaron: I’m glad to be back. Thanks for having me back.

So Aaron, today I wanted to talk about inclusion. It’s something that I bill myself as being an advocate for the disabled, but also trying to promote inclusion in the world around us. And when I saw your handle, It, it jumped out at me because I thought this is someone I want to talk to.

I want to find out more about what he’s doing. And so I’ve been, I’ve been really looking forward to having this conversation with you because it’s, it’s just, I, I hear parents talk about how inclusion is so important, but their child never really feels like they’re included. I’ve taught workshops on how teachers and professionals can use role playing to help teach inclusion to their students, their teammates into their classes, but it’s not something that seems to come easily.

There’s always this awkwardness where we’re not sure what we’re really doing. And I’ve kind of concluded that, um, I think a lot of our fears fit into this whenever we aren’t including someone like, like we, we, we feel good about saying that so and so is part of the crowd. They’re part of the outskirts of the crowd. They’re not, They’re not in there having that interaction and being full belonging of what they’re doing.

And, um, and so I’m, I’m curious where, where we’re going to go with this conversation. This is where we’re starting from, but, um, having shared that from my side, I’d like to ask you, why do you feel that inclusion is important to you?

I feel like I’m super passionate about it. I have it. I mean, I don’t know if you’re able to see that, but. I have inclusion tattooed on my arm, so I’m pretty much all in on inclusion. I just, it started for me when, um, Cece was sent across town to like a segregated setting and just subsequently realizing that wasn’t the only option.

And then it just became, I mean, as a parent, I mean, this stuff’s for me, it’s super, it’s emotional. And just, uh, for me, this injustice part of it, like, Why so many years after idea of the law was passed, are we still, you know, segregating people, not having them included just bugs me what in my upbringing or what in my, you know, my life caused me to get to that point, but it’s just not right in my mind.

So just that piece, a lot of it is. We don’t talk about, at least in our community, we don’t talk about stuff like this, what’s happening. I went to visit Cece when she was in first grade, I think, in that segregated setting, and kids were already, you know, folding laundry, and I was like, they’re in first grade, why are we already folding laundry?

I mean, why are they not in math class and reading? We’re already writing them off? Like, they’re not going to be able to do stuff? Why is this happening? So just, That part of it, we need to include them. And the way it’s supposed to work is when you have the meeting for the placement is you’re supposed to start in the general education setting and then work the other way.

In our situation, it seemed to be like Cece had all these ways she qualified for an IEP. So it just kind of jumped somehow to that segregated setting right away, which is not how it’s supposed to work. So just seeing the system not work the way Feel like it’s supposed to be working and, you know, gets that fire going that I want to help first of all, just talk about inclusion to get it out there and then, you know, help for my daughter, make it more, make it a reality as much as possible.

And then further, you know, kids get it, you know, have it for them too. I mean, once we started talking about inclusion, it’s not, it doesn’t just happen in our community where, you know, kids with high needs are, you know, excluded, segregated. So, um, just something that I’m super passionate about.

I’ve noticed too that sometimes depending on, and we’re talking about kids right now, but depending on the child, some have just a natural ability to be able to bridge that gap and to make friends and to, to be friends with kids in that regular classroom, however you want to call it.

Um, But when they’re being, when, when they’re part of the class, they’re part of the class and kids just champion around them. But you have other kids who are just really quiet and shy, or maybe they have a physical hindrance that’s keeping them from being able to join in with the others. And that’s, that’s the child that I feel the most passionate about because we need to help them figure out how to be there.

Either way, both scenarios, the way I’m describing it, It’s the child with the disability who’s having to do all the work to get into the classroom. And I’d love to see it so that our classroom is just stepping back and welcoming them with open arms. Any ideas of how we can help at those young ages, first, second grade even, to help all of the kids see each other as all of the kids and not just the kids?

I mean, I think a lot of it, I mean, it comes down to the adults in our experience, the district doesn’t see inclusion the way I see inclusion. So if you’re starting off already, at that point, it’s harder to get, you know, the inclusion, what I view as inclusion for my daughter, if that’s not even how they see it.

So a lot of it, it feels like adults, how they see the inclusion. The other pieces we have, I mean, I feel like, like universal design for learning, we need to, Start let’s make the curriculum start where it’s accessible for everybody at the beginning instead of this is our curriculum now. We have to modify it.

It just makes it harder and more work. But for Cece, I mean, she’s in a wheelchair. So once we started getting her into the general education, I mean, not every class has a desk in it that a wheelchair can go under. So now you have, you have that situation. Okay. On the IP, she’s in the room. There’s not a desk in all the rooms she can be under.

So now, I mean, she’s in the room, but that’s not inclusion. She’s just in the room. She’s not part of, like you’re saying, part of the class. She can’t have a desk. She doesn’t have a desk next to another student. She’s in the corner. Um, so there’s those pieces, like intentionally, like that should be a planning thing with the school.

I mean, we should have one desk in each room where we can at least, if there’s not a child with a wheelchair, we can at least adjust it if there is. So it’s not more of a What are we going to find a desk? Well, at some point, I think she had a table. She kind of was drug around with her by her para. Um, so she would, so, so, I mean, it just makes it harder.

Cause now she’s the kid going down the hall with the wheelchair. First of all, now she’s dragging, you know, a table behind her. I mean, it’s just a lot of, it’s just about the planning, like the planning and how to do it.

Well and you, you made a good point, the table or the desk shouldn’t be off to the side of the room.

It should be, if the kids are sitting groups of four, it should be one of those four so that, so that they’re there as part of it.

Oh, another story I have to share is like, she was, she was, she like, she loves music. So she was in choir. Um, when, whenever she was able to do it, so there’s like a older, I mean, adult choir in town.

So they have had like a Christmas, I think it was a Christmas concert. Her choir was invited to participate. Well, they had it at a historic theater in town where the. Stage was not accessible by wheelchair in order for her to be able to participate. We had to put a chair on the stage. I had to pick her up out of her wheelchair, carry her up onto the stage, put her in the chair and then get her back off the stage after they were done singing.

So I mean, even, even something like that. I mean, I understand you want to perform in that venue, but. You have a child that’s in a wheelchair. So how do you get them on the stage to participate without their parent having to carry them up there? How do you feel included when you’re, you can’t even get up there without somebody, your dad carrying you on the stage?

Yeah. And is, was there another way maybe they could have had the whole choir was backstage together and then they all came out together. It would have taken a little more work to get set up, but at least then during the performance, you’re not having to be the one that is carried up and carried back down again.

Yeah, no, no one, especially if she’s in her teens, no one at that age wants to have that type of focus on them. They want to be back giggling behind the curtain with the other girls. So, yeah. So, um, how, so, and I know we’ve kind of jumped into this, but it makes sense how our children who have a disability feel included and benefit from inclusion. How does the community around them benefit from that?

The more diverse in my mind, the community is, I mean, if we’re all the same, we’re all. I mean, look like me or act like me, it’s going to be boring. So just having that diversity, having other perspectives, I mean, she’s loves music, she loves saying hi to people.

Just she’s cheerful for sure. For me, like I get bogged down with like worrying about what other people care about me too often. And she, if she’s singing, she just. blares it out and doesn’t care about that. So, I mean, that perspective, a different perspective, I think, you know, she shares, um, for me, the inclusion piece in the community is big because I mean, I’m getting older, I’m not going to be around forever.

So, I mean, I feel there’s going to be a point where, I mean, I’m going to need some other people to help take, you know, look out for her, take care of her in the community. And then by her being in the community earlier on, people know who she is. They recognize her, comfortable coming up, saying hi to her.

Um, if she’s driving her chair into Walmart or something and, you know, there’s something in the way or whatever, helping her around the community. I mean, if I’m not getting her out of the house, out in the community, meeting people, getting them used to her, I mean, that’s not going to happen. So I feel it’s important.

And if, you know, as a parent, some days you’re like, why is, why do I have to do all this? Why is it so much work for me? But that’s, if I don’t do it, it’s not going to happen. So, yeah, you kind of have to just like, it’s not fair. No, but. It just, you just have to do it. And part of why I like to talk about inclusion, you know, it’s just people don’t, you don’t know what you don’t know.

I mean, I don’t, I’ve never had experience with any, you know, my child or anybody close to me, you know, having, I mean, like, uh, like cancer or diabetes. So I don’t know anything about it. I’ve heard the word, but I don’t. I don’t know what it’s like to, you know, go through that, live through that experience. Um, so I feel like part of it is just as a parent, I mean, I need to share, share my story, you know, explain that not every venue we’ve gone to see a music, you know, performance is accessible before we go, you know, to a concert, I check with the place to see what is it accessible?

Yes. I still ask that question, you know, in 2024, because not every place is so.

Right.

It’s just it’s just part of it. I don’t want to get there. And then we can’t get in because, you know, they don’t have a place way to get her in there. So it’s just 1 of those things that. Is it right, fair that I have to do it?

No, but you just, you just do it. Just, it’s just part of what you have to do. So, and by spreading the word of inclusion, I feel like, you know, bringing up, you know, a situation where it wasn’t inclusive. I mean, that just helps other people, you know, I feel like if they see something that’s not inclusive, they’ll question it or bring it up, you know, their business.

You can’t get a wheelchair in there easily or at all. How can we make this so it’s accessible for people in wheelchairs? I mean, that helps. People with strollers or walkers or canes and stuff too. So, I mean, let’s just, you know, get the word out there and spread, you know, that information.

I haven’t thought about this for a long time, but when my daughter, Emily was in probably fourth, fifth grade range, she, um, had a mission that she kind of gave to herself.

And that was to evaluate restaurants all around our area and, um, find out how accessible they were for the blind. And so, and what she was starting to recognize was if she went into McDonald’s or somewhere, she couldn’t read the, the menu. And so she was always going to have to have somebody read it to her, unless she could figure out how to fix this.

And, um, so, you know, as, as a child, her, her goal was, can I evaluate all of these and make a directory so that other people could see this and look ahead of time before I arranged to meet somebody, And then that way I’m not embarrassed. I don’t have to have somebody else have to read it to me. And so I took her wherever she wanted to go.

She talked to managers and asked them, you know, so if I came in, how would you handle this? And she was surprised that I think McDonald’s was the one that actually had it in Braille. So that was Braille. They had large print, they had picture, they had. pretty much everybody. Um, she went into a few places.

They had a large print menu, but unless you knew to ask for it, it didn’t exist. And if you didn’t get the right employee, they didn’t know about it. So it still didn’t exist because no one could get it to you. So, um, she never, never did much with it. And there’s other, there’s apps out there now and all this.

But, um, but it, it taught her a lot and also taught me a lot that it’s not just because things are available, doesn’t mean that it’s going to be available to the person that actually needs it. Because if, if the manager knows about it, like one place she went to, they had everything, but it was inside a sealed envelope in the manager’s office and they had, it had been there for months.

They’d never even opened it. So if a customer came in and asked for it, even if they knew it was supposed to be there, The person that’s taken their order has no idea that they even have it. So it’s, um, so it’s kind of interesting on that, but what you brought up was a good point that I remember now about that, that part of what she was trying to do.

She kept telling them, well, if I can’t read it, what are all the grandparents going to do whenever they come in? Because they can’t see it either. And she had a very good point. You know, it, it does benefit. And, and you, you just mentioned the same thing. We have an aging generation that’s going to need walkers and canes.

And, you know, even if they’re not using it, they need to have a safe way to walk so that they’re not tripping on a stair or something. So it does, it does benefit everybody there. The, um, the other thing I wanted to, to mention for our listeners, If you go back to last season, let’s see if I can see what number it was.

Um, episode 60, we had Kristin Secor on and she is traveling around the world in a wheelchair and she could have been set aside as not important, but even though she needs to have an aid with her and she, she’s needs help doing some of these things. She has a wheelchair and a ventilator and she’s traveling all around the world.

And now she’s leading groups, teaching them how accessible travel can be with modifications. She posts on how to get the accessible housing that you might need. How, how do you get your transportation and all? She’s contributing a lot to a ton of people. And not only just seeing her being able to travel, but she’s now saying, I’ll take your hand and show you how to do it.

And, um, and so Cece has just as much to offer, you know, what is, what is, what is she going to do to leave her imprint on the world around her? But let’s let her do it by including her in society and letting her be part of this. Yeah, so one thing I want to ask, so we talked about the wheelchair ramps and the stage issue, things like that, because especially these older buildings, doorways are narrow.

There’s, there’s a lot of boundaries there. Um, what are some of the biggest barriers that, that you’re noticing any others that are coming to mind besides what you’ve already shared?

I mean, we go for walks around the neighborhood. I mean, there’s still. You know, sidewalks that don’t have curb cuts. I mean, so you’re walking in a neighborhood, get to the end of the block and all of a sudden there is no curb cuts.

So then you got to backtrack. If there’s driveways, you can use those, but otherwise you’re going back or, I mean, to me also hit some of these, you know, residential streets aren’t very wide. So, I mean, you have to go on the side and then if she’s in her wheelchair, like going around cars and getting back over.

So it’s just, you just really have to watch for it. I mean, or there’s, you know, there’s parks that still don’t have, you know, handicapped spots in them. So if we. If there’s a lot of people there, there’s not like a, you know, designated spot for us to park and, uh, park in the van and stuff, which completely blows my mind because ADA was passed in like 90 or something, and we’re talking a long time ago.

So it’s still, I don’t understand it, but, um, those are, those are kind of the main things where it’s just more with her, the wheelchair accessibility stuff where it just. I mean, we went to, to listen to the music at a place we can walk from my house in town and you had to go through the building to go outside to get in the parking lot that was roped off.

And. You go come out the back door and it’s like a, I don’t know, like 6 to 8 inch drop to the thing. Well, the only way to get down there is they had to pull like this wooden ramp that they had somewhere else. Like you’re saying, they have, they have a way to get down there, but it’s not out there. Somebody had to get it and then it’s barely wider than the wheelchair and there’s a hole like in the middle of it.

So you’re like praying it doesn’t, you know what I mean? It’s just, how can we. How can we design this or build it so it’s accessible for everybody all the time? Like you’re saying, instead of it’s in the manager’s office or it’s in our storeroom. And what if this employee doesn’t know what’s even there?

Like, I can’t, she can’t even go, you know, participate in the music. So it’s just getting those, those types of things are kind of the main things right now.

All right. So before we, before we wrap up our, our interview part, I wanted to ask you about, um, to be able to, to give some advice to our, Our listeners and um, so listeners, this is our section where I’m going to give him some open ended statements.

He’s going to repeat them and finish them up for me. So the first one I have for you is the biggest impact we can make on creating a more inclusive world is…

The’ biggest impact we can make on creating a more inclusive world is loving our neighbor. Um, that to me is, um, a big thing. I mean, I grew up in church and that talked about loving your neighbor and just treating other people how you want to be treated.

Um, so I feel like if we treat others in the world, like we want to be treated, it would be more inclusive.

So one small step everyone can take towards fostering inclusion is…

One small step everyone can take towards fostering inclusion is, um, talking with people with disabilities to see how you can include them.

Um, so just talking to them to begin with, asking them, what can I do, you know, to help you, um, be more included. I asked this question to a, um, guy I know and. My town here who was also has cerebral palsy. I’m like Cece and he said, um, just if he’s out in the community, but get a restaurant, um, you know, ask him what he wants to drink or eat instead of asking the person with him because he finds that often, um, If he’s with somebody, they tend to ask the person he’s with, not him, what his opinion is.

And that’s also true for me. Uh, if we go to the doctor, um, you know, the nurse still ask what, what’s your name? What’s your birthday? Um, they often will ask like me or, um, Cece’s mom that information. She knows her birthday. So if they ask me, I’ll say, okay, Cece, what’s your birthday and have her say it. So just, uh, that’s, that’s a pretty big thing.

Just talking to people with disabilities and. Getting their input on how they want to be included or the things they come across.

So that’s it’s a really good point and especially those who are having to use a mobility device like a wheelchair Because unless they have one that lifts up where you’re eye to eye They’re down below you And, um, and as a society, I know I see that time and time again, that we literally look over them and talk to whoever’s near them.

And it’s, it’s not fair to the child, the adult, whoever it is you’re talking to. All right. So the last one is the future feels brighter when I see…

Uh, the future feels brighter when I see, um, people including Cece, my daughter, I’m just where I’m able to have her out in public and, you know, somebody is talking to her.

Yeah. Yeah. Go to church and, you know, she goes sits by somebody else and I can just kind of sit back and, um, you know, enjoy her, you know, having somebody want to talk to her, spend time with her, treat her like she’s just like she’s a person just like them. So that’s gives you that glimmer of hope that.

All the work that’s been done is worth it. And, um, she’s going to be okay.

Tell us a little bit more about The Inclusive Dad.

Uh, so yeah, I started The Inclusive Dad. Um, I love, um, inclusion. I’m passionate about it. So what I do is I do one on one, um, coaching with families, um, to navigate the special education process.

Um, that’s what I’m working on now. Um, I didn’t know anything about inclusion when Cece was born, learned a lot about it and, you know, learned that. Um, it doesn’t, it’s not fair and I don’t like it, but when you have somebody, as a parent, if you have another person there, an advocate, a coach, somebody with you, um, it changes the, changes the dynamic.

Um, I mean, the school seems in our, my experience, um, personal meetings for Cece and others I’ve been in, they just seem to be more on task, seem to be more respectful. Um, that part of it on and Cece, I think I talked a little bit about on the last episode, she qualifies under multiple categories. So the first meeting we went to, but I remember it was before ours, we went to her brother’s, um, like back to, you know, just the back to school meeting.

So it was me, um, my ex wife and my son and the teacher lasted 5 minutes, drop off your stuff. You’re out the door. Go to Cece meeting. It was me, Cece, my ex wife, and at least 10 people, 10 school staff on the other side of the table. Um, so there’s just this, for sure, like, um, you know, children with needs, like my daughter, there’s just the power imbalance just implied is, you know, So just, I like to help families navigate that process, whether you need, uh, you know, help looking at the IEP seeing, um, if you just want input on the IEP can help with that.

If you want somebody to attend a meeting with you also, as a parent, I mean, you’re hearing a lot of stuff. A lot of it, at least from my experience is not. All positive, so it’s emotional having somebody there also, you know, to help listen, catch things, ask questions that you need to, you know, ask. Um, so I offer just one on one coaching.

I also have a monthly membership. Um, different levels of that, um, what’s included in that is like a private membership group, um, where you have access to, you know, ask questions, um, get information, um, then, then you get like a, you get a 15 minute call with me a month, um, included in that membership, just if you have anything you want, have questions about, need to work on, um, we can work on it in that time, uh, once a month, networking calls, so just once a month on zoom where we schedule and just, you know, meet with other parents just to get to know each other.

Okay. Find out, you know, what other things, what you get going on in your life, uh, once a month question and answer calls. So that one’s more focused on, you know, if you have questions, um, that you looking over the IEP, you have a question about something you can, you know, bring that, um, I’ll help answer it.

Other parents can, you know, Hey, yeah, we went through this. This is how we handled it. Here’s a resource that part of it. Um, access to live webinars and recordings and then discounts like on the one on one coaching. If you need more, um, coaching, uh, the next level that includes more, it includes like more hours of coaching.

So, you know, you have more of a complex, um, need more than just the 15 minute call a month or those other calls. Um, you can add stuff to that. Like my daughter or Cece’s. I mean, we had evaluation reports that were probably 75 pages. I mean, we had IEPs that were 30, 40 pages for our IEP meetings. So some of our stuff got pretty intense.

So I just want to be there, help other families, you know, through that process. Big picture. I mean, I want to make the whole. society world more inclusive. Um, so trying to figure out how to best tackle that part of it. Haven’t figured that out yet, but I’m just, just the awareness piece. Um, I’ve given one TEDx talk on inclusion.

Um, well. Two days from now, I’m doing my second TedX talk. So that will be probably out there maybe before this is this episode is published. But so yeah, just getting out there and spreading my message.

Well, Aaron, I’ve enjoyed this. I enjoyed, um, hearing about your story last week. Um, hearing more about just talking about inclusion.

I think the more that we talk about this, the more other parents will realize that they do have a voice, not only just for their own child, but for reaching beyond their family and helping for that next generation, even coming behind us. So thank, thank you for sharing this and joining me for, for both of these episodes.

Yeah. Thank you very much. I really enjoyed it.

Thanks for joining me today. I hope this conversation has inspired you to learn more about inclusion, advocacy, and the power of individual action. Be sure to visit our Etsy shop for creative writing resources that foster empathy, understanding, and a love of storytelling.

Our offerings include creative writing journals for kids, interactive story kits, and digital downloads for teachers and homeschool parents. By supporting Water Prairie, you’re not only investing in quality educational materials, but also contributing to a more inclusive and compassionate society. Visit our Etsy shop today at https://waterprairie.etsy.com. Be sure to join me for the next episode with my guest, Mary Harper, the author of the book, “The Sound of Her Voice, My Blind Parent’s Story.” Her parents were successful adults who found genius ways to work around the discriminations of their time period. And I think you’ll enjoy meeting Mary.

I’ll see you next time.

The post Episode #106: The Power of Inclusion and Advocacy appeared first on Water Prairie.

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Join us as we follow Cece’s inspiring story of resilience and determination. Learn about the challenges and triumphs of parenting a child with epilepsy and cerebral palsy. Discover practical tips, valuable resources, and the emotional impact of this journey.

This video features an exclusive interview with Aaron DeVries, the founder of The Inclusive Dad, who shares his personal experiences and insights.

Don’t miss this powerful and uplifting story that will leave you inspired and empowered.

Connect with Aaron:

Epilepsy Foundation of Minnesota: https://www.epilepsyfoundationmn.org/

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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/

Aaron DeVries is the founder of The Inclusive Dad, an organization whose mission is “Building stronger communities through inclusion.” His commitment to “Inclusion” is evidenced by the tattoo on his left arm. He is the father of two young adults. He was thrust into the world of disabilities and special education after his daughter was diagnosed with epilepsy and cerebral palsy at an early age. He has spent over 15 years advocating for inclusion for his daughter in school and the community. He has served on various boards and committees of disability related organizations. He has given two TEDx talks entitled “The Power of Inclusion” and “Unlocking Inclusion for People with Disabilities.”

Full Transcript of Interview:

Aaron: It’s not the most fun advocating for your child, but I always, it’s my daughter. If I notice it, I’m going to ask a question. It’s just going to happen.

Tonya: What does it mean to parent a child with disabilities? How do you balance the emotional rollercoaster with the relentless pursuit of inclusion? Welcome to the Water Prairie Chronicles, a podcast for special needs parents.

I’m your host, Tonya Wollum, and I’m glad you’re here today. I’m joined by Aaron DeVries, the founder of The Inclusive Dad. Aaron is a passionate advocate for inclusion and the father of a young adult with disabilities. In this episode, we’ll delve into his experiences, parenting a child with epilepsy and cerebral palsy, his journey advocating for inclusion and his insights into the emotional impact of raising a child with special needs.

Um, I have a 20, I think, yeah, she’s a 22 year old daughter, her name is Cecilia, we call her Cece. Um, at three months old, she was diagnosed with, um, epilepsy, um, her aunts who are nurses noticed her having seizures, took her to the Mayo Clinic, which is close to where we live in Minnesota, and she was diagnosed with, um, epilepsy.

Um, subsequent to that, she was diagnosed with cerebral palsy. Um, so that’s, and so she’s now 22. Like I said, um, she’s been on seizure medication since that time, um, taking them every day, um, and she uses a wheelchair to get around, to navigate the world, so that’s just a brief.

Aaron’s daughter, Cece, was diagnosed with epilepsy and cerebral palsy at just three months old.

The unexpected news brought a wave of emotions and challenges for Aaron and his family. Even though they weren’t first time parents, Aaron and his wife were unaware of Cece’s seizures until her aunts, who were nurses, noticed the unusual behavior.

Her mom and I didn’t notice anything, but we went to a Christmas, um, that, she was born in October and went to Christmas in December.

Um, she has two aunts who were nurses at Mayo Clinic and noticed she was like staring off to the side. Um, so they noticed that, um, the behavior that she was exhibiting. And then we just took her in to get checked out and subsequently, you know, had all the tests done, um, EEGs and stuff, which showed that, um, she was having seizures.

So we, we personally didn’t notice anything. It was her aunts who had noticed it and led us down that path of getting it diagnosed.

As Cece grew older, Aaron faced the challenge of advocating for her inclusion in general education classrooms. Despite initial setbacks, he persisted in ensuring she received the appropriate support and resources

In the IEP, she qualifies as like severely multiply impaired, I think is the language ’cause she meets it under tons of categories. Um, so, so they, you know, they recommended she go to the segregated, um, self contained classroom across town. Um, we agreed to it because, I mean, that’s, we didn’t know any better subsequently found out about. And then after that, try to get her back into the general education, a hundred percent, which, um, other parents probably know this too.

Once you’re kind of in the special education segregated path, it’s super hard to get back. At least our experience was, it’s hard to get back into the general ed. So there seemed to be hoops that were there that aren’t there if you’re just in general ed. Like you have to prove stuff. More stuff to get back in than just whatever.

So so that was kind of the path we took. By the time she got into high school, I mean, she was, I think, maybe 1 or 2 periods she was not in general education. Otherwise, for the most part, she was in the general education class. So that’s kind of the path that ended up happening for us.

To accommodate Cece’s needs, the school provided modified curriculum and one on one support, ensuring she could participate fully in the classroom.

I mean, as long as I can remember, she had a one to one pair with her. A lot of it was to do with the seizure part of it, just to like be there and be able to watch for the seizures. Um, being able to administer the meds if she needed it, because that’s the piece with the epilepsy, the seizure part is she also, in addition to the IEP, had a, like a health plan, a seizure plan in place.

So, um, she took her noon meds at school. So they, I mean, you have to have the paperwork in place to go to the nurse’s office. Get the meds. Them to administer like the, you know, the rescue medication if she’s having a grand mal. So every year we would have the Epilepsy Foundation of Minnesota would come in and do training with the nurse and the school staff just to get everybody on the same page about, you know, this is standard.

You know, seizure first aid and then like, I mean, this is what Cece how hers presents. So, you know, this happens, you need to follow this procedure and that kind of thing. So there’s in addition to like the IEP part of it, like I said, there’s also is the seizure pieces that we had to have in place to make sure she was safe at school.

Parenting a child with special needs can be emotionally demanding. Listen as Aaron shares his experiences navigating the ups and downs of this journey.

I didn’t remember seeing anybody with a disability growing up. Had no experience with it. So it was all like new stuff for me. You know, just trying to figure out what’s happening.

I mean, I kind of, my approach was, I mean, you know, she’s my daughter. And I mean, we’re just, I’m just going to do what I need to do to, you know, to, you know, support, keep her safe, support her, get her the help she needs. Um, that was kind of my approach to it. Um, so it was just a lot of, like you said though, we had two little kids.

Um, Cece always from when she was young, you know, wanted me to be, you know, like have her take care of her. So I kind of took more of the role of, I mean, I was working, um, my ex wife. She stayed home with the kids. So I mean, when I came home, I’d be, I would want to, you know, help her out, you know, and you know, take over the parenting thing to give her a break.

So it was a lot of, you know, spending a lot of time with Cece. Keeping her, um, you know, having fun with her. I mean, lots of doctor appointments we did right. The Mayo Clinic got that diagnosis, um, trying to figure out there was a period of time where, you know, you do all the testing, like genetic testing, all the testing to try to figure out.

Right.

What, what caused it? There was never, we never got an answer. Um, like I said, the pregnancy was normal. Um, the birth was a repeat C section. So no, I mean, everything was normal. So there was nothing to like pinpoint what happened. Um, the scans showed that she had, um, extra like water in places of her brain where it should have been tissue.

So, um, the scan can see that, but there’s, like I said, there’s never been, we never had a solid answer to what, you know, caused it, which, um, for me, I mean, it’s, I mean, we tried to figure it out, didn’t, and I just accepted that as like, you know, she’s, she is my daughter. She is who she is.

It’s important to note that connecting with other parents who have similar experiences can provide invaluable support and understanding.

She’s still in the transition program. Um, so when she turns 22 in October of this year, then she will be done.

As Cece prepares to transition from school, Aaron and his family are exploring various options for her future, including vocational rehabilitation and community based activities.

Currently, she goes to school for, I think, like an hour and a half a day, and then she goes and works at the library, um, like there, so she, she loves that.

Um, I think we’re hopefully maybe continue that and maybe find some other type of volunteering employment she can have in the community.

We didn’t discuss specific transition planning strategies in the interview. However, it’s important to consider the following steps for a child Cece’s age.

Develop a comprehensive plan outlining goals, services, and supports needed for successful transition.

Collaborate with educators, therapists, family members, and community providers to ensure a coordinated approach.

Research vocational training programs, job placement services, and supported employment opportunities.

Focus on developing daily living skills such as personal care, transportation, and budgeting.

Offer ongoing emotional support and guidance to help your child navigate the transition process.

This season, what I’ve been doing is asking each of my guests to share some advice for our listeners through a series of open ended statements that I’m going to give. So, um, so Aaron has agreed to, to play along with this with us.

So the first one is, the best advice I’ve ever been given as a parent of a child with a disability is…

The best advice I’ve ever been given as a parent of a child with a disability is take time to enjoy the little things. Um, I mean, with. Cece’s needs. I mean, it’s 24 seven. I’m helping her out, you know, daily living tests.

So just those moments she loves music. So those moments when we’re listening to music, she’s just singing her heart out and kind of everything disappears. Just take time to, you know, enjoy those moments, wherever they are for your child, where you can just kind of forget about the day to day stuff and just live in the moment.

Second one, I wish I had known this, or I wish I had known blank about epilepsy and cerebral palsy when my daughter was first diagnosed…

What I wish I would have known right away is that we weren’t alone. Um, there’s others, others going through similar things. I mentioned like the Epilepsy Foundation of Minnesota.

Um, for us, for our family, that was really awesome. Um, we got used to having to like, go to doctor appointments and explaining everything happening over and over again, or every, you know, telling the same story. It was nice just to have a place where you could show up and just be around other families, not have to explain the whole thing and just, you knew that everybody in the room was going through similar stuff.

So that was, you know, that was a big help to finally figure out like, hey, there’s other people doing this. We’re not doing it all by ourselves.

And then the last one is the most important thing I’ve learned about advocating for my child is…

The most important thing I’ve learned about advocating for my child is, I mean, sometimes it’s, I mean, it can be kind of uncomfortable.

Um, I have more than one story where, um, she was having seizures to the point of, I mean, I, I got, it got to be where I would come home from work, she was in the ER, I would walk to the door of the ER and they would just point to the room, didn’t even have to ask my name. Um, so I was, I was to a point where, you know, I was kind of desensitized to it.

So I was able to pay attention. Um, so there was one time when she was having a grand mal’s 90 minute seizure, where they got the medication, were going to put it into the IV line. And. The doctor said, well, we have to do it over let’s just, I think it was five minutes. We have to do it slowly. Otherwise it’s going to burn her veins.

Well, another time after that, we were there, they got the med, um, stuck it in the IV and just pushed the plunger. So I’m like, hold on a second. I’m like, what just happened? Cause like the last time this happened, you just did this. So somebody needs to explain to me what just happened. So, I mean, for me, I was like desensitized to the, stuff that was happening, I was able to pay attention.

So just sometimes, and that’s not comfortable because most doctors I’ve met, they don’t like being questioned. So sometimes it’s not the most fun advocating for your child, but I always, it’s my daughter. I mean, if I notice it, I’m going to ask a question. I mean, it’s just going to happen.

Before we finish, share with us how listeners can get in touch with you if they have any questions for you and um, anything that, that you’re working on right now that you want to share about.

If you want to get a hold of me, uh, go to my website, The Inclusive Dad, or you can use the QR code on the screen goes to my link tree with my social media and those things on there. So you can reach out to me that way. Um, currently I help parents one on one coaching through helping coach through the special education process.

Um, we’ve got a monthly membership as an option where there’s a couple of calls a month, um, that are included, um, like a question and answer one and another mastermind call just to, you know, have support for each other, walk each other down this journey. So that’s how you can reach out to me and how you can work with me.

Thank you for being here today. I appreciate you sharing about your life and, and Cece’s life. And I’m, I’m sure there are families who are going to benefit from hearing this.

Thank you. Thank you for having me.

I hope this conversation has provided you with valuable insight, support, and inspiration, and left you with a better understanding of parenting a child with epilepsy and cerebral palsy.

To stay connected and receive more resources, visit I encourage you to sign up for the Water Prairie newsletter at https://waterprairie.com/newsletter. You’ll get updates on upcoming episodes, exclusive content, and valuable information for parents of special needs children. Join me next time when I continue talking with Aaron about his work with The Inclusive Dad.

Together we can create a brighter future for our children and build a more inclusive world. I’ll see you next time.

The post Episode #105: Parenting a Child with Epilepsy and Cerebral Palsy appeared first on Water Prairie.

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Join us for a powerful and inspiring conversation with filmmaker Jay Silverman. In this episode of the Water Prairie Chronicles, Jay opens up about his personal journey as a parent to a daughter with limited speech. With raw honesty and vulnerability, he shares the challenges, triumphs, and unwavering love that have shaped his family.

Discover how Jay’s experiences as a parent influenced his latest film, “CAMERA,” a moving portrayal of a young boy who finds solace and expression through photography. We delve into the importance of representation, the impact of disability on families, and the power of storytelling to create empathy and understanding.

This episode is a must-watch for parents, caregivers, and anyone interested in human connection. Get ready to be inspired by Jay’s story and the strength of the human spirit.

During the interview, Jay spoke about the film CODA, which is about a deaf family. The original script of ‘CAMERA’ was written about a deaf boy so they changed it to be about a mute boy in order not to be similar to the film, CODA. The decision was also because Jay wanted to make it more personal and use his daughter’s story.

Connect with Jay:

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Support our podcast and help us share more incredible stories by making a donation at Buy Me A Coffee. Your contribution makes a significant impact in bringing these stories to light. Thank you for your support!

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/

For over 40 years, Jay Silverman has excelled as a leading Director and Photographer specializing in award-winning television, digital, and print campaigns; Jay’s current dramatic feature ‘Camera’, stars Beau Bridges, Jessica Parker Kennedy, Scotty Tovar, Bruce Davison, and Miguel Gabriel. It will be released on Amazon and Apple TV on July 23rd, 2024. Other films include “Girl on the Edge”, “Off the Menu” and “Saving Paradise”.

Full Transcript of Interview:

Tonya: Jay, welcome to Water Prairie.

Jay: Thank you so much. Uh, you know, I want to just say, Tonya, out of all the podcasts I’ve done for my movie, this is the one I look most forward to. So thank you for having me on.

I thought what we do is we break the interview, start with talking about your, your life as a parent, that role as a parent first, and then we’ll move into, to talking about the movie more. So listeners stay with us. You’re going to want to hear all of this because it’s going to make the movie even more impactful to you after hearing this part of his story.

So you have how, how many children,

three,

three, and, um, are they all, all girls or do you have boys and girls?

They’re all girls, 26 to 30.

One of your daughters has limited speech or had or has, is it still as an ongoing condition?

She’s now 27 years old and she is, um, figured out a way to work around her low voice and her sometimes whisper.

Because of damage that was done at birth by the Uh, intubation process that was excessively done to the point where her vocal cords were compromised by scar tissue.

How common is that to happen? Do you know?

It’s so interesting you just said that because I just went for a procedure unrelated to any of this.

And the nurse, uh, who was helping me, for some reason, my Life story came up to her and I told her about my daughter being less than two pounds at birth in the NICU. Oh, I know how it came up. She said to me, I’m a NICU. I come from the NICU and, um, uh, I no longer work in that world now. Now I’m doing what you’re here to have me do.

And, um, and I said, You know, I have a lot of familial familiarity with NICUs. My daughter was in it for almost six months and she, she had a tracheostomy. She had, um, all sorts of remarkable procedures 27 years ago. And now she’s, uh, she’s almost as tall as I am and she’s just a magnificent spirit.

But, you know, I am talking to an audience of parents here, I have to share with you, you know, my daughter worked at a retail store during the summer during the pandemic, and she wore a mask and people would say, you’ve got a cold, young lady, why are you working? And she would have to say, no, this is my normal voice.

And I use this story because it was essentially, you know, adult bullying is basically what it was. And rather than label it, let’s just talk about the side effects. My daughter was devastated because every day somebody attacked her verbally. With, um, uh, stories like I just described. And that’s a part of what I’ve interpreted in some respect or extrapolated in my movie, CAMERA, because CAMERA is featuring a young boy that is mute.

And it’s for the same reasons? Or do we know that?

Exact same reasons, as a matter of fact, when you watch the movie, the little child, um, in photography was actually my daughter, uh, where my wedding ring was on her wrist. So you can just imagine how small that child was.

I’ve seen the movie. We’re going to get into this more. Phenomenal movie, by the way, I thoroughly enjoyed it.

The, um, but I want to make sure that we’re not having too many spoilers here. So, so if I ask a question that you shouldn’t answer, please say that. I was wondering about, about that picture at the end, um, on it. So, um, so that’s, that has even more meaning to me now.

I want to elaborate on something you just said. The writer who wrote this movie is as a gentleman named Jamie Murphy. He wrote it. Uh, he’s from Ireland. And, um, we put a lot of love and a lot of care into this film, but I’m only sharing this with your audience because these are the, the, the challenges and the opportunities for filmmakers. In this particular case, his movie was written for a mute and because, you know, literally at the same time we were developing this movie, Coda, came out.

I, uh, I immediately said I, I can’t, you know, I love the story, but I would have to modify the character and he was totally up for that. I did not want to cast in my movie, a child that wasn’t familiar with the disability of having challenges with his speech, and the young boy in my movie, uh, named Miguel Gabriel, uh, himself actually had speech issues when he was younger and he had to seek therapeutic, um, solutions and he had to seek a, you know, an acting coach and it’s, it’s basically, it takes, it takes a village, you know, his mother was, predominantly engaged.

Her name was Michelle. And, but when you watch my movie and this is not a brag, this is a reality that everybody seems to, uh, kind of, uh, compliment is this little boy is so extraordinary because he has an ability. To express himself without using words in a way that is not just, you know, um, can you make a, uh, an expression of this?

Can you make an expression of that? But storytelling, you know? Um, so I just want to say it was important for me to a understand disability that my daughter had, because this character we made have the identical, um, challenge at birth. He, it’s she, the character even states that her son was three months premature.

You know, um, all you have to do is talk to a group of parents that have had a child that’s premature and they will. Unload the identical same stories, you know, I mean, as a parent, I can tell you that is vital to a filmmaker, whether it be myself or me interviewing somebody that actually lived it, because you don’t want to make a movie that’s not authentic.

Absolutely. Absolutely. And it’s in, in this one it’s the first time that I had even heard that that was a possibility. You know, I think of kids surviving the, the NICU and all the, you know, you, you picture the picture of them having all the wires and the. Tubes and everything, but, and it makes perfect sense, but I never thought about this being a possible, um, scarring that, that, that could happen.

So, so Tonya, I have to say the woman that I mentioned a couple of minutes ago, that was the, uh, the NICU nurse, when I explained to her what happened to my daughter and believe me, you know, um, um, And I say this as a man and my ex-wife who, you know, we share this child coming into the world. I mean, I have to say, nobody could imagine to confront what a parent goes through when your child comes three months premature.

And to have her say to me, this NICU nurse, I saw it happen all the time. Just blew me away because the hospital made a choice to use young intern, uh, students, you know, to essentially watch over the young NICU patients. And my daughter, and it’s, you know, it’s part of her story, would always rip the tube out of her mouth at, you know, At one week, at two weeks, and they have to re-intubate her.

So don’t get me wrong, I don’t necessarily believe that, uh, things happen for a reason, you know? I mean, certainly, they’re not telling my daughter to rip it out. They had her taped here, and they had her taped here. But she was so strong of what a will to wanna live that. Um, she kept ripping out, you know, the only thing that’s saving her life.

And, um, so they had to immediately, you know, re-intubate her. And, you know, I witnessed this and I have to tell you, sometimes it took ’em two, three minutes to put that tube back in her, in her throat. And, you know, each time they’re doing it, they’re scraping her. Vocal cords and over time, and I’m talking about, you know, she was in the NICU for a long time.

You, uh, build up, uh, a, uh, scar tissue and essentially, uh, damaged the vocal cords. And that’s what happened to her. So that, that was our protagonist kind of backstory.

So with your daughter, you knew, well, well, how, how early did you know that damage had been done? Was it later?

A year later.

Okay. So when she would have been starting to babble and, and talking some, as she was growing up, were there areas where you saw significant changes in improvement or breakthroughs in communication for her?

Was it a gradual change?

Look, you know, we, we, we all are made of our life experiences and she’s a tough, she’s a super tough cookie. And, and you asked the question, you know, it takes two, it takes a physician and it also takes the patient to want to help themselves. And my daughter was so incredibly stubborn that it wasn’t until later in life that she actually understood what, why, you know, speech therapy was so critical because.

Much of that comes from, you know, your ability to breathe and gain no different than if you’re training to be an opera singer.

Exactly. I was thinking, I was thinking of that, that comparison with singing, you have to have the breath to be able to support the sound. I was a quiet child. Um, I was very bashful, very shy and, and just insecure.

And so my mom, my mom talks about how I would cry if you just looked at me and, um, It wasn’t until the teen years that we, we had to move during that time and I was ready to move on and become who I was and, and leave that behind. Had we not moved, I don’t know how long that would have taken for me to kind of come out of my shell, but I can remember frustrating my mom because she couldn’t hear what I would say.

And then, so she would get louder asking me to repeat and I would get quieter and as a result of it. And so it wasn’t always a good match there. Um, and then I would end up crying because my feelings would be hurt. You know.

Yeah, but you see, it’s a magical, uh, thing to reflect back on what you just said, because not only, you know, too apparent for you to hear that, You know, I’m cognizant of the pros and the cons of some of the things I’ve done as a parent, you know, um, there’s only, um, it does take two and you know, I, I have to say as a, as a parent of, of, uh, Children, you know, there, there are just magnificent moments, um, that I believe why your listeners listen, where they get wisdom or they get an inclination to understand, you know, my goodness, this is my story.

You know, I just watched an independent film on Netflix last week. It’s called, almost, I was, uh, I Used to Be Famous was the name of the movie. It’s an independent film, but it’s about a child that’s, um, on the spectrum that is very, very, um, But really, in my opinion, as a parent watching this movie, I learned more from the mother.

And what did I learn? I learned exactly the sacrifices that parents have to make, whether you’re conscious of it or unconscious of it. Because conceptually, overprotective parents of children with challenges are in many cases, detrimental because the kid just like you, you wanted to be heard. But when she repeated to you, um, uh, the question or what have you twice as loud, you were intimidated.

You kind of closed down and we’re not taught as parents how to wrangle, um, you know, this kind of, uh, challenge. And so That’s why I make movies because these, these pivotal kind of pinnacle moments in human behavior that, um, that escape all of us in day to day.

When as parents, you know, we, we all want the best for our child.

You know, they’re, they’re born our goal. We were already dreaming about what they’re going to be as an adult and our job as parents, those first 20 ish years is to get them ready for that leap. To be independent and to be, to be out there. And some of our listeners will be sending their child, their child to a group home setting or some type of extra support.

Others will be sending them out, out the door. It may take them a little bit longer to get there, but they’re going to be out on their own. They’re going to be independent. Um, you know, totally without our support anymore. If we’ve done our job right there, they’re ready. As parents, we, we stress on this.

their, their whole lives and after they’re gone. Cause I’m, I’m at the stage now where in the next few years, my kids will be finished with college. They’ll be hopefully out there starting to prepare to take care of me one day. So we’ll just flip it around in a while. But, um, but there’s, there’s a lot of questions, you know, that we have is, you know, did we do it right?

Did we, did we miss something really crucial when they were five that’s going to show up later? You know, and I think we all, we all worry about that cause we want to have the best for our kids. But, um, I talk a lot about how the stage that Steve and I are in right now is we’re, we’re coaches, you know, we can, we can cheer them on from the sideline, but we can’t get out there and play the game with them anymore.

So, um, so if we’ve given them all the, all the right plays, then they’re going to be ready, but they, they sometimes call an audible and it’s not the same play that we had And we’ll regroup as a family and we’ll, we’ll talk about it. They’ll, they’ll text us or call and we’ll, we’ll kind of strategize with some ideas they might could try next time.

Um, but it is, it is hard sometimes.

I want to ask you a question. Um, there’s a description of, uh, cause I made a mistake. Um, and I, and I want to share this because it’s indicative of the world we’re living in. Uh, we were calling charities cause we want to do. Beau Bridges is a big star. We have a great cast and a great message film.

It’s a drama. And we wanted to have, um, screenings all around the country, uh, with charities where, you know, we don’t make a penny, all the money goes to the charity. And I called this big charity in, in Manhattan and I don’t want to name its name, but whoever answered the phone confronted me, you don’t even know what you’re talking about, because I said, you know, my, uh, My movie’s about a child, a non-speaking child.

She goes, that’s not at all what you’re describing. You’re wrong. Your child, you know, to have a child with a speech issue is a different terminology. So you don’t even know what you’re talking about. And, and I thought, wow. Um, That’s important. You know, this idea that I’m using the right descriptives and the right terminology.

Sure. I respect that. She, basically, that was it. We were done talking. Um, and she and her charity or that charity lost an incredible opportunity to share, uh, with their community. Um. But, but this kind of stuff bothers me greatly because we’re all different.

As parents, we should be supporting each other no matter what the reason is.

You and I have kids with different types of, of needs of call it disabilities, whatever you want to call it, but we can still talk to each other civilly and we can encourage each other for the stage that we’re in right now. But I hear it time and time again, where we kind of beat each other and we should be a community for each other.

So, so I think when you call the organization that may have been part of what you were working through, that may be the reason for the boy not being able to speak in the movie may not have matched what their reason would be. And this person may not have been able to connect the two.

Yeah. But you see, that’s, that was the beauty of the story I gave you, I think, before we went on air, which was the fact that these women came to my screening and were mesmerized by the story because number one, their parents have children with challenges.

And I didn’t, and from their mouths to my ears, they said, Hey, we don’t care what the disability is or the, the, the challenge. All we care about is the journey because we all want to inspire our young children to, you know, to learn. I mean, even in my own life, cause I tell you, my movies are a reflection indirectly of me, um, uh, in my life when I was 15 years old and I was in photography school.

I’m not ashamed to admit it. I was, uh, I was introverted. Um, I wasn’t the best communicator verbally and frankly, um, learning that a camera can help me extrapolate my feelings, whether it be storytelling or just grabbing something that created interest was a tool that I use. Not unlike the character in my movie.

Uh, the young boy uses his camera as a communication vehicle.

Well, I, I want to talk about the movie some, so the, the character that Beau Bridge’s plays, he’s the glue that’s holding that whole story together. It’s it’s like everyone needs someone like that in their community. It’s just, it was, it was well portrayed, but I really, I felt like he’s, he’s what pulled everything together there.

And um, but there were some moments of distress that I watched the interactions with the main characters and. The ending of it kind of, it’s like everything wrapped around. So, so it kept my interest the whole way through to the very last moment of it. And, um, and in fact, whenever it ended, my husband and I both were sitting there for a few minutes, cause we were just kind of digesting what we had just seen and it really was impactful to us.

So it, so, and I’m not just saying that I really, it’s rare that I don’t start fading out during part of a movie or something, and then come back in and try to put it all together. This, this, this one kept, kept my attention all the way through. And, um, but the, um, I was surprised at, early on, you used a word that has a lot of controversy going on right now.

And it was, it was using the, the R word.

Oh, I mean, I, He was being bullied. Yeah. Yeah.

Yeah. And so one thing that I wondered when I was watching that, knowing that I was going to be able to talk to you, how do you decide when you’re looking at a script and you know, something like that is going to be a huge trigger for some of our audience, especially how do you decide when to leave it in?

Because the time period, the era that the movie’s taken place in would have been more likely to have used it than it would be today. Or when you take it out because of the audience today watching it, how do you make that choice?

It’s a pretty, um, important thing. Um, I’ll use an illustration, you know, when you make a movie and this movie was never designed to be quote unquote, a family movie, it was, it’s a drama, you know, about a family, um, You know, so, um, just to start this out, you know, I removed all the F words, okay?

Because, and, and if you ever watch any content out of the UK or Ireland, you know, the F word is just part of the vernacular. In United States, in Canada, you know, it requires a little more. Those are easy decisions to make. We left the R word in there because of ignorance. You know, uh, children, um, are vehicles of their own parents.

Um, I think it would be, um, It’s a compliment that you’re bringing this up because frankly, uh, if you said to the guy, I hate your hair or, you know, you’re ugly or, you know, you’re a dope, it’s not as effective. And, and I don’t want to be politically correct in a scenario where the child is getting legitimately, you know, I mean, let’s be honest in the movie.

The bully calls him a pedophile, you know, I mean, uh, you know, these are words that are part of the vernacular on TikTok on all the Instagram on these mediums that the children get educated and to me. You know, um, uh, I think it’s just super important to, to not, uh, sugarcoat a message, uh, with, uh, perfection, because life is not perfect.

That’s what makes movies so extraordinary for me, because it’s a wake-up call. You, you realize, human beings are just cruel to others. That’s kind of why, uh, we left that in the movie. Because guess what? It’s, it’s, it’s not only horrible, but it represents such ignorance.

It does get your attention. It shows, in a very quick scene, the situation that is happening.

And so it, it, it was effective. I was just curious how you make that choice. Um, you know, there, there are a lot of things we, before we started recording, we were talking about, um, there’s phrases that, you know, there, there’s, there’s arguments on both sides, whether we use special needs or disability. When I, when I first started the podcast, I was trying to figure out how do I, how do I have just, what are my talking points?

My elevator speech, what am I going to use? And so I took it to the disability community on Reddit. and put it in several different ones to ask for input. And it was split 50, 50, which, which one I should use. So I use them both interchangeably. I don’t mean a negative to anyone by using either either phrase, but it depends on the situation of how I’m talking.

Um, you also have, um, when I’ve gone into communities asking, is it better to say an autistic adult or an adult with autism? Again, it’s split. Okay. And for different reasons, it’s split. So, you know, I apologize all the time. I never mean to offend. If I do, but, um, it’s not, it’s not meant for a negative way.

It’s meant because it’s my understanding of the most respectful at the time.

There was a movie that was made in the, I think the seventies that addressed this entire problem. I forget the name of it, but it was a really good movie. Um, but the child was voiceless, uh, mute. But it turned out that his disability had nothing to do with his voice.

He, he couldn’t hear, you know, in those days in school, they didn’t check. Um, you know, now I think when you go to, uh, preschool or whatever, you know, you have to go and

this hearing test. Yeah.

Imagine here we are in 2024. We’re probably half the, the world doesn’t get tested. You know.

It’s the same, the same with vision.

How many kids go three, four, five years. And no one’s realized that one eye is not working and it’s not the eye, it’s the brain isn’t communicating with the eye. And if they can, if they can address that early enough, the child’s vision is saved.

But you see, this is the magic of, of your podcast, because if only one person gets something from you or something that my movie offers or something that I say that was worth the whole, the whole thing.

All right. So I had a couple more questions because I’m, I’m looking at time. I don’t want to abuse your time today. What were some of the biggest challenges that you had while you were filming?

Well, it’s funny you say that because I’ve answered this question from other podcasters. And, um, You know, I feel, and this is a kind of an odd analogy, but you know, when you have a child that’s got a challenge, you build a team, you know, and that team is hopefully, uh, equally compatible where you have a physician and a consultant and, and then you collaborate, you know, uh, you don’t make a movie like my movie, CAMERA, without having a team of experts that.

aren’t there for any other reason than wanting to be a part of something that’s important. And, um, there isn’t one person including Beau Bridges that, you know, I know, you know, when you watch the movie that there’s a message there that’s not subliminal. It’s just the story. It’s an older man who is interacting with a young child and becoming indirectly a mentor.

Um, That, that, the beauty of that is something that you as a parent and me as a parent know is, is just beyond words because I was lucky enough to have a mentor in my life. And I know Beau Bridges had a very famous mentor by his dad and also by, uh, having, um, uh, John Wooden from UCLA, who was a renowned, um, um, uh, coach.

That, you know, he trained and taught his students, uh, not, not what is the most important thing. It was a pyramid strategy that, you know, your goal cannot be just to win. It has to be the experience. And if you don’t win, the experience is loaded with fulfillment, you know?

And he brought that to the, to the movie and, and I got to just say, you know, um, the feedback that we’re getting on behalf of Beau on behalf of the little kid on even behalf of, you know, the story, you know, you start to recognize that we were brought up in a generation where, you know, in my parents generation, it was, it was called, um, Not, uh, a mentor, but it was called an apprentice.

Okay. And we don’t have that anymore in the vernacular. The vernacular is now, you know, Oh, uh, this could be a great coach. I think you mentioned that, you know, uh, whatever you want to call it, it doesn’t matter the fact that parents, I don’t believe you as a mother of a, of a, of a child, that’s got issues seeing.

Your biggest dream would be that she meets a professor that engages her at a level that is so extraordinary that all of a sudden she’s got a purpose she feels. And that’s the magic that happens with mentorship or with, you know, this idea that, uh, we’re all experiencing life independently. No, it’s the wisdom of older people.

That I feel is idle in America is something that Europe has always had. You know, when you go to, when you go to Italy and you see that guy making that perfect shoe, I mean, and it’s one of a kind, he is the son of a son of a son that’s made shoes for generations. And. I, I know I’m going on and on about this, but there’s magic there, you know, and I wanted to share that.

Do you have any, um, any future projects that you’re working on now?

I do as, as a, as a matter of fact, , we’re working on a movie called Yale, and it’s, um, just a magnificent true story that is about a. A man that, um, is a bigamist that has this, uh, inability to, uh, retain relationships and the story is really about his daughter who he’s exchanged from for over 35 years that has to, to save her own son’s life, um, re-engage with this man, uh, to save his son’s life with an organ transplant.

And, um, It doesn’t go as planned and that’s what makes the story so extraordinary. You know, it’s interesting cause in research, just like I just explained to you, I do a lot of in my movie. Um, this screenplay is filled with real life experiences from the actual writer. Cause it’s a story about his grandfather.

And, um, what’s like a lightning bolt to me is this idea that, you know, um, In my view, the film could attract, um, just an incredible interest in the value of donors. As crazy as that little issue is, that’s what I have to hold on to when I make a movie, you know? I know that, um, That, uh, this is a true story.

Uh, we’re screening the movie, CAMERA, and there’s somebody crying in the theater. Um, and it sounds like a, a little baby and it turns out it was, um, my sweethearts, um, Six-year-old nephew and we went to him and we said, you know, are you okay?

And he goes, oh, yeah and he said well because we were worried about you and he goes well I couldn’t stop thinking about my grandfather watching the movie and, you know, I don’t have a dad and what I see is my father and all the things he’s taught me and I just thought, Oh my goodness, you know, who would have ever planned that emotion coming from a young child?

Because in his case, his grandfather, who I know well. Is an extraordinary human being. He’s the kind of man that would do anything for his grandchildren. And not only is he doing that, he is, you know, essentially the mentor and, um, everything about this child, you can see the grandfather in. And why do I make this point?

Because, you know, you can’t go out to make a movie that you want to do that emotion from the audience. It’s organic, you know, and, um, that’s, that, that’s really extraordinary for me.

For someone to be, to be as young as that, to pick up on all those things as well.

Yeah. Yeah.

Before we close, I have had my guests this season give some advice in a little different way by having them repeat.

A few statements that are open-ended that I’m going to have, have you finish it for me? And, um, and Jay’s agreed to do this with us like our other guests have. So I have three for you, Jay. All right. So pack, pack full of wisdom. There’s no right or wrong on these. Whatever you want to share. So the first one, the message I hope to convey through the movie, CAMERA, is…

I feel CAMERA has an ability to comfort and open your eyes to something that I think most people take for granted. And that is how it’s possible to put a hat on that’s not only positive and fulfilling, but have an ability to be able to show in a movie, um, uh, the transformation of that fight of that thinking.

And to me, the most exciting part of the message of this movie is the idea that. Uh, young people and older people can share wisdom and in this movie, it’s about two characters that are in so many respects incomplete and the two of them together, um, I think improve one another’s lives and the message is very positive.

All right. So the next one, I hope the movie, CAMERA, will inspire viewers to…

I hope the movie, CAMERA, will inspire viewers to see that no different than the characters in the film. We all have the potential to want to share and become a part and partial to, uh, young people and older people. Um, and, and learn that we all have gifts. All of us that can make the world a better place.

Excellent. And the last one, the scene in CAMERA that I’m most proud of is…

One of the scenes that I’m most proud of in my movie, CAMERA, is where you start to put the puzzle together of imperfection. And I think everybody that has had, uh, somebody special in their life. Can reflect back on it and recognize the pros and the cons because it isn’t the fact that, uh, an individual came into your life and made your life better.

It’s the fact that an individual comes in your life and teaches you something. And to me, that’s the message of one of the, my favorite scenes in the movie where the character makes a little mistake and the true colors come out of the, of, of the mentor. And, and you realize he’s not.

How can our audience, how can they find the movie? Where, where is it available for them? How can they contact you?

My recommendation is if you want to watch this movie, you go to Amazon and you can rent it. Uh, there’s a whole bunch of most, um, what they call video on-demand sites, including Fandango, Apple, uh, they all have my movie now. I recommend if you have taken an interest in, in my films, you go to jaysilvermanproductions.com and you will see CAMERA along with other movies because I’ve dedicated my career to wanting to help others.

And that is the primary goal of my company. And I think you, you can read all about it and see trailers from my other movies. And to me, you know, um, the payback is the fulfillment of knowing that I’ve, I’ve, I’ve moved the, the, the gamut just a little bit into a direction that’s a better world. Perhaps.

Perfect. So we’ll, we’ll put the link to, um, to your website because from there they can get to the platforms to be able to watch it. Is that correct? Yeah. Okay. That’s correct. So that, that’ll be the easiest thing. So we’ll put the direct link there. And, um, I appreciate you taking the time to, to go into detail about your own personal journey, but then, um, but then telling us a little bit, a little bit more about the movie too.

I’ve, I’ve really enjoyed meeting you today and, and thank you for being here.

It’s my pleasure. I wish Water Prairie Chronicles the most success because in all the years I’ve been doing this and it’s almost 43 years, you know, it appears that you struck a chord with me personally and with people that have children that have challenges, um, a destination.

And I really respect that. And I understand that it’s predominantly a labor of love and I’m super grateful for being on your show.

The post Episode #104:  How to Understand and Support Children with Limited Speech w/ Jay Silverman | CAMERA, the Movie appeared first on Water Prairie.

Find the full directory at waterprairie.com/listen.

In this interview, Tonya speaks with Julia Pearce, a mother, disability advocate, author, and assistive technology specialist, about the use of AAC devices (Augmentative and Alternative Communication devices) for children with speech impairments.

Pearce shares her personal experience with her son, Dallin, who used various AAC devices throughout his life. She emphasizes the importance of early intervention and assessment to determine the best communication tools for each child.

The conversation highlights the different types of AAC devices available, from simple one-button devices to complex speech-generating systems. Pearce stresses the importance of involving parents in the decision-making process and the role of assistive technology teams in providing support and guidance.

The interview also touches on the broader concept of assistive technology, which encompasses tools to support various needs, including reading, writing, and mobility. Pearce encourages parents to advocate for their children’s access to assistive technology and to collaborate with educators and therapists to find the best solutions. Overall, the interview provides valuable insights into the world of AAC devices and empowers parents to explore options for their children with communication challenges.

Be sure to catch Julia’s interview about parenting a child with epilepsy in Episode #102!

Connect with Julia:

Purchase Julia’s book: https://amzn.to/3WmQuck

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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/

Meet Julia Pearce, an inspiring presenter and author about advocacy, personal lived experiences, and communication. Julia is dedicated to sharing her space and story to help others.

Julia is a well-known presenter at local and national conferences. She writes about communication, advocacy, and her own experiences.

Julia authored a powerful memoir, sharing the life of her son, Dallin, who lived with multiple disabilities. With decades of experience working in education and assistive technology.

Full Transcript of Interview:

Julia: When I think about assistive technology, it gave him a way to say what he wanted, how to tell jokes, to decide who he wanted to talk to and when, and how much information he was going to give.

Tonya: Imagine a world where your child can’t tell you what they need, want, or feel. For parents of children with limited speech, finding ways to connect and understand their child can be incredibly challenging.

Welcome to the Water Prairie Chronicles, a podcast for special needs parents. I’m your host, Tonya Wallum, and I’m glad you’re here. Today, we’re diving into the world of augmentative and alternative communication. or AAC devices with special guest Julia Pierce. She’s a mother, disability advocate, author, and assistive technology specialist who has firsthand experience navigating this journey.

Julia, welcome back to Water Prairie.

It’s great to be here. I love these topics.

This has been fun. We, we learned a lot about you and of Dallin’s story last week and listeners, if you missed that, make sure that you go back and listen to the story. It’s um, it’s, it’s a very heartwarming story, but um, but it, It’s sober as well.

So, um, but it, it’ll tell you a little bit more about where we’re coming in from. So if you did miss it, make sure that you go back and catch that. Today, though, I want to talk about, you mentioned how he was, he used sign when he was younger, but that he tried different devices. And I want to talk about that some, because some of our families that are listening are familiar with AAC devices or they’re not familiar with it yet, but they’ve had it mentioned and they want to know more about it.

So can you tell me a little bit more about the different types of AAC devices that Dallin used? Okay. And how they helped him to communicate more effectively.

This is one of my most favorite things. I may have mentioned to you when we were speaking that assistive technology and augmentative alternative communication is how half of my body flows.

Dallin is my other half. And so bringing them together is pure joy for me. Dallin did sign Use sign language, his signs were adapted, he had lost his intrinsic muscles, those teeny tiny muscles that help us do a thousand things, but also accurately sign and yet anybody who knew American sign language or other types of sign language could read his sign.

And so he did that. First, when he came home from the hospital, he did survive an illness and that took all of his communication, expressive speaking language. When he got home from the hospital, he needed to let us know what he needed because he was able to do that before he was ill. And so. A speech therapist, a speech language pathologist had recommended teaching sign language to him right away so that he could have quick access.

We didn’t know if it was going to work. I started teaching him sign language. He learned it as quickly as I could show it to him. His first sign was cracker. Uh, Joy, he was two, he needed to ask for a cracker, he couldn’t open up the cupboards, and we taught it to him as quickly as we could. From there, once he started in preschool, he had an assessment.

In our state, we have assistive technology teams in each of our school districts. That’s not the usual or common thing across Especially in the United States, sometimes there are, but in ours, we had an assistive technology come team, come and do an assessment, complete one with him. It basically meant they watched him, saw what he was needing to.

Let others know about, when he was in preschool, he was about four years old, they had him start to learn about language and they found that maybe having a one button speech device that would say one thing so he could ask for help or request markers or call for a friend But it needed to start making sense for him because he was signing, but not everybody could understand those adapted signs.

And so that’s where he started was with sign language, which is its own language. And then they started using augmented and alternative communication or AAC with him when he was four. Every other year from there on out, that assistive technology team came and did either an updated assessment or a follow up with him and he started to use additional voice output devices, speech generating devices throughout his life.

When he was seven years old, he trialed one that he thought was so cool because he was in charge. of how loud the volume could go, when he could change the volume and what it said on the front. This is before any of the tablets like that we use now. Sometimes it’s on what we, the iPad or some other of the other types of tablets.

This is so many years before that. So we trialed a device with this assistive technology team and he was in charge of when To change that overlay, he could turn up the volume. He could yell at us from across the house and say that he needed more, or this is hilarious or whatever it was. When he was seven, he got his first piece of equipment for home that helped him communicate along with his sign language.

Then he added more things in school. We added more things at home and it continued from there. Technology also changed across all of those years. He got another device when he was 15 because he decided he needed to say more to people who didn’t understand his signs.

Did he at any time use multiple types of devices for different situations?

He did, and in school, in his preschool, and elementary, there might be that one button sitting for requesting or commenting, so I, you know, I need more milk, because snacks is when you always need more milk, when you need to put that cookie in, and you’re, they’re making a mess, and they don’t want, whatever it is, but what if over in the, the, With the shaving cream, they, you need to clean up and then there would be something about, I need help to clean up.

Eventually, our son had seven devices that he placed in our house for different things at different times with sometimes different people. Yeah. You would say, this person isn’t going to learn more than this, so I’m going to keep it simple for you. And I’m only going to use this. He had Um, two systems that were more complex that he knew would confuse some people.

So he didn’t use them with everyone. He was a very astute communicator. And then he had a couple systems that he would, we used, we called them pop talks in our house. They were quick. Come and look at this. You’ll never believe what’s happening. This is so funny. Oh, you missed it. Come here fast. They were so quick because if I couldn’t see his sign language, he still needed to get my attention.

And then we would communicate with other ways. He was also great at rolling his eyes and slapping his leg. And he used everything around him for communication. And so do a bunch of us. So do a bunch of us. I’ve been rolling my eyes and lifting my eyebrows. You guys have all seen. And you hear the tone in my voice and my shoulder just went up. And that’s all part of communication as well.

Well, I think about, you know, if signing was his primary language, it sounds like, so that is more expressive with the full body language. And the facial expressions and everything else. So it sounds like he, he kept using that no matter what he was using.

He did. He used that from the week he got home from the hospital after his illness until the week that, um, he did pass away due to his disability. He used sign language until that final week of his life, along with many other communication systems. He used everything. Every chance he could, he used it all.

Now, was he, was he around when iPads were being used for, for an AAC device?

So I love the iPads because they’ve been out for, Almost 12 years, about 12 years now, they came into play right as he was coming near end of life. And he, at that point he had seven different systems and the assistive technology team and his teachers were so wanting to try it. They’re like, let’s try this.

He had established communication systems at that point. Was very kind. And he let them try things with them and then he gently closed the iPad case and put it back into their bag and said, I’m good.

I have not worked with an AAC device. I’m familiar with what it is, but I haven’t used it myself. But my thought was the number of screens that could be loaded into that.

Then you were saying from different environments, he could just switch to that simplified screen for those who don’t understand what he’s trying to do and then switch to the more complicated ones for, for the family and everyone else.

Yeah. So the device he did have was similar to. What we have now on the iPad. It was on about the size. It was about this big. So it was about the size of my iPhone. Now it was about that size. It did the same thing that the apps do the communication apps do now. So it was a very robust, full communication system.

So, was he your first introduction for you personally to assistive technology?

He was. Yeah. When he started having those assessments by our assistive technology team in the district, I didn’t even know what the words meant. The teacher said, would you like this assessment? And I agreed and didn’t know what I was agreeing to. And the, the team came out, they included me during the discussions, they showed me what would be.

I’m happening. They taught me this new language about language communication and all of the things and was very, we were very much a part of things together. Dallin and I and the assistive technology team and all of his education folk. We were all there together.

And now you’re working in the field of assistive technology. How did that change come about?

So when I was in. I had a situation where I began working for the school district. He was in preschool, actually, and a job came up. And part of what happens sometimes is when families are looking for work, which was what I was doing, one came up in the schools. And so I could go to work while he was in preschool, and then I would get back home.

So I was working the amount of time. That he was in school and then things changed with his health. So when his things changed, I was no longer able to work in that position in the school district. The assistive technology team actually had a position that they needed to have filled. And I had known them for the previous nine years because of their work with And they knew that I was.

Just voracious. I would learn anything and put anything into practice. They could give me a new device to learn for Dallin. And I would take back in the day, the manual, which is four to five inches. Nothing was online back in those days. And they said, okay, you have 30 days with this. Good luck. And I would say, awesome.

And I would take it everywhere with me. I would take it to parties and people. Are you doing? Devices were massive back in the day. So I started working for the assistive technology team in the district. And I worked there with that team for 10 years and learned and worked alongside of this marvelous team that had been with our son for the previous nine years, and that’s where it began.

They taught me and I went to conferences and. I’ve been now working in assistive technology for 20 plus years, almost 25 years. I now do it at a different level within our state. Still are connected with all of our school teams. And that was the beginning of it with some really incredible, powerful, powerfully inclined people to help students learn and grow. And do what their goals are as the students determine it,

I can imagine too how many families appreciated having you there because you understood as a parent, some of the confusion that there is and trying to learn, but then having that sensitivity of seeing the success that your son had with it and being able to help expose their, their, their children and then the families as well to, to new technologies. And this goes beyond just AAC devices.

Dallin used augmentative equipment for communication. He also needed supports with executive function, knowing this was going to happen and being able to predict what was going to happen. And he also needed things for writing and for mobility later. So assistive technology. It’s. This massive category under, um, IDEA, Individuals with Disabilities Education Act, and so powerfully supported.

So can you, can you give us an idea of some of the different types? So you’ve, you’ve mentioned a few things there. What are, what are some of the most common areas that a might hear that There’s a recommendation that their child tries out something.

So within the broad scope of assistive technology, there’s ways to support people with reading through what’s, um, could be called like text to speech. So you hear what is, um, on the screen if people have a hard time with reading and writing the opposite, which is speech to text. And. The, so that’s when you speak.

So we use it all the time. Some of us have it on our phones where you see the microphone. It’s also in many of our computers. So it’s utilizing those types of things with vision. It sounds like many of us. may need some support. I have my husband using enlarged text. There’s also screen readers that help people when they need to have things read that’s on the screen.

There’s executive function, that’s knowing where you’re going next. That’s why I have three calendars. Knowing where I’m going next and what I’m supposed to be doing and who’s going to be there. There’s so many things. And then with communication, there’s a It’s just a broad array for communication supports and then we get into the fun parts.

There’s assistive technology to help with leisure, which is having fun. We use that word leisure and I think of a leisure suit and I should be in Arizona. Um, but it’s having fun. It’s why our son, when he needed to go from skiing on his feet to sitting down skiing, that was an adaptation and assistive technology for his skiing.

There’s so many fun, fun things and he was the one who helped us decide it. And that’s what we get to do with assistive technology.

So it’s not always electronic devices that we’re talking about.

No. And so I mentioned that our son used seven different systems. Some of them had batteries, some of them plugged in and some of them we use tape to put on the, that was part of his executive function support that he actually used for others who came to the house to say, this is what I do, and then you’re going to help me do this, and then you’ll help me do that.

It was for him to help others know what he was going to do next. Cause. You got to follow the schedule when you’re in somebody else’s house. And there’s a lot of things people say. It could be a pencil grip. It could be a slant board, which is actually sometimes a three inch binder. There’s so many ways.

If you use a three inch binder, use a non slip, um, surface. So the paper does not fall off. There’s so many ways to look at it. That’s why having an assessment done, if needed. Um, is always a bonus.

Well and, as a parent of a child who didn’t need this, I’d recommend you parents that are listening. If it is mentioned, have the evaluation.

The worst case would be, they say, everything’s fine. You don’t need to make any changes. The best cases. You find a piece of a small little tool that you never thought of before that makes your child’s life easier and they’re able to continue learning. And, and sometimes it is, as you say, maybe it’s entertainment, but they have the right to be able to have downtime and enjoy themselves during that time.

Um, and you’re talking about the slant board. It could be as easy as having a slant board for a child who has a posture issue and now their toys are reachable for them. They’re not having to search for them. Um, things that we as parents may not think of. So I, I appreciate explaining that more.

Yeah, there’s so much. I, and there’s, there’s frameworks we can use and there’s observations and, oh, that’s so much fun. I, by the way, I’m never bored.

Well, creativity has got to be half of your job because every child’s going to be just a little bit different from the one before.

For sure, yes, there’s so many ways to do this for an individual. And again, that’s part of IEP is individualized education and. It’s so magnificent what we can do now, even for our son, people say, why did he need so many things? Well, he chose them. He told us what one more area that he needed, and it could have been when he was looking perplexed in a situation where like, I wonder if something more could be needed here.

I wonder if, and then we would try it and it would fill that need for him at that time in his life. And that’s what we would do. Stay curious. It’s beautiful.

So parents that are listening We, we, we’ve just listed a lot of different categories that you may hear about them in. If parents are feeling overwhelmed about the types of technology that are available, what resources would you recommend that they use to try to help them narrow down what they really should do or not? And I think your first answer is probably going to be listen to your child. But maybe not.

So listening to your child is one piece of it. I think crafting a really well put together IEP, because the goals come first. And then looking at, is there something we can put into place to help with an accommodation support, like through related services, that’s your different therapies in a school setting.

Is there something we can add to help create success for that goal? So if you have a reading or writing goal and you’re working on it and you’re like, is there something more that could help with this? If a child is using a Chromebook and it’s not quite working well, is there a setting under accessibility?

That’s called universal design for learning, and sometimes teachers are saying, well, I’m not quite sure about that. Is there an extension that could help with that? A lot of schools are using either a Chromebook or an iPad, or they’re on a desktop computer. A little bit less often on desktops now, but is there something after the goal is created?

And now how do we help this child find success? And that’s where the consideration process of assistive technology comes into play. And if things aren’t sure by that IEP team, then you can say, does anybody else have a resource that we can ask for them to come in and look at assistive technology? Now, in our state, like I said, every district.

In public education has access to one of our assistive technology teams. And if your state is a little different, you still have access to that consideration and, um, use of assistive technology, cause that’s under IDEA. That’s under the federal mandate. Now that comes through. The special education director or the LEA and asking the question of, I wonder if something more could be done with assistive technology.

And if you get a look of, huh, then is there a resource we can bring in to help us figure this out? There’s all sorts of resources. I love asking these kind of questions. There’s parent training initiative centers, sometimes called parent training centers that can help with these things. There’s many resources that are available, but asking about that.

Hey, let’s consider assistive technology. It’s actually under the five special factors. on each IEP that should be being looked at. And I say should, but it’s actually must as per Department of Education. I love Department of Education. So it’s actually one of those five, five special factors. Uh, I know now you’re all super curious because I love that part of the Difficulties with Disabilities Education Act.

That’s where you start, start with your goals and then Is there more that can help provide success for this student at this time?

I know, um, as I’ve talked to parents around the country, some, some of them are living in very remote areas and their school system may not have direct access. More than likely, it’s more a case where they’ve never had the question come up before.

And so parents, you’re listening. You just heard, you have permission to ask this question at the meeting, or even beforehand. Um, yeah, I recommend submitting your, your questions ahead of time so that the team can have time to, to answer them. Investigate a little bit and be ready when you come in and, um, and, you know, if you can approach it as a teamwork, then, then you’re going to have a better relationship to begin with.

But, um, but you may be the one that now teaches the entire school district and help the children that follow yours learn that this is a possibility.

It is really great when you can ask a question like that and they get their thinking caps on with you. It is. Doing it together that becomes powerful because everyone is there for the success of your student. They really are. They really are.

I want to transition now to our advice section here. So I have three questions for you about AAC devices and assistive technology that we’re going to try to pass on some advice with. And the first one is, The most significant way assistive technology has impacted the life of someone I know is…

The most significant way assistive technology has impacted the life of someone I know is. Through my son, of course, and when I think about assistive technology, that is the way that I think about how it gave him a way to say what he wanted, how to tell jokes, to decide who he wanted to talk to and when, and how much information he was going to give.

It also was how I saw that it impacted his life. And he decided when to say no and when he was finished, which are equally powerful for somebody to know how to do that for self advocacy and self worth. And that’s how I saw it be so impactful.

Okay, next one. When choosing assistive technology for a child, I always consider…

When choosing assistive technology. For a child, I always consider four things. I learned this through the team that I worked with, how they worked with our son, and through this same national presenter. Her name is Joy Zabala. She has a framework that’s called SETT. S E T T. Looking at a student, who they are, where they go, the environment they go to, the tasks or the goals they have in life, and then going to the tools or the things they’re going to use.

Those four things are how people, team members, Teachers always saw our son, it was him first. It was never a tool first. It was never the equipment or the system or the product or something. And then it was where he wanted to go. If he wanted to go tell the secretary something or his bus driver. And that’s what I do now.

Who are the people I’m working with? Who are these young children or young teenagers? That’s what I do still, those four things, and it’s that framework from a grand teacher in the universe, Joy Zabala.

And I like that, that you broke down student to, to the who first, because that’s, that’s the most important part. Okay. So the last one in this, we talked about this a little bit, but I think this is a good way to wrap it up beyond the technology itself. The key to unlocking the child’s potential is…

Beyond technology itself. The key to unlocking a child’s potential is to let the child lead, to let them show you what a preference.

Or a non preferences with a device, a system, a place where they are, where they want to go, how they’re going to interact with who or what is the key. They will and have and continue to be the advocate. That they know to be. If we will get out of their way and be still, that is the key.

Excellent. Great advice. You keep, you keep bringing it, and I appreciate that.

It’s I’ve seen it for 30 years in many, many situations. When we get in the way, then we’ve lost it. They know it and so will we.

And if we can teach them to speak early, then they’ll continue speaking. It’s, it’s when we kind of poo poo what they’re saying and keep pushing them aside that some of our kids will, will stop thinking they have a voice.

So, um, so I love, I love the way that you’re advocating for all and the voice can come in different ways. It may be electronic, it may be through sign, but you’re, you’re, you’re right. They have a voice and they, they, they know what they want to say if we’ll listen to them.

Yes, they do. Yes, they do.

All right. Tell us again how to find you, what projects you have going on. Um, I was excited when I heard about the second book coming up. So, so tell us about all these things again.

So people can find me on Facebook and Instagram. My website is juliapearce.Net. That’s P E A R C E. That’s how you can find me on my social media as well.

I’m also on LinkedIn. I, you can find my book on my website. The book is The Boy Who Became More Than We Could Imagine. The flow of assistive technology is almost everywhere in that book. It’s how we knew him. My next thing’s coming up. I do have a second one that I am writing about what comes next. People have asked me for that one.

It was always in the works. What comes next after a child is no longer here with us? And then I do have another project that I am working on supporting families of children who have passed away. their family members, their siblings. And that’s what I am doing now.

We’ll put the links for all of that in the show notes and on the webpage. So if you’re on the audio, you may have to go to the webpage to find it, but it will be linked everywhere. If you have questions about AAC devices, assistive technology, what you need to ask going in, Put your comments in there. Contact Julia directly. Send us an email to [email protected]. We’ll get the, the answer back to you.

So just reach out. That’s, um, we can’t answer you if you don’t ask. So, so leave your, leave your comments in your notes and we’ll, we will get, get that for you. So Julia, thank you for, for sharing all this. I, I even having. Children who are in the system, a child who had multiple technology evaluations. I learned a lot today. So thank you for sharing this with me.

It was so nice to be here with you. Thank you for letting me come.

I hope this conversation with Julia has provided valuable insights and resources for you. If you have a child with limited speech, remember you’re not alone in this journey. By sharing stories, information, and support, we can create a stronger community for families facing similar challenges.

If you found this episode helpful, please give it a thumbs up and subscribe to the Water Prairie YouTube channel for more informative content. Your support helps more families find these stories. And don’t forget to leave a review on the Apple podcast. Your feedback helps us improve and ensures we’re delivering the information you need most.

In the next episode, I’ll be speaking with Jay Silverman, a parent advocate and filmmaker. He’ll be discussing his experiences raising a child with limited speech and his new movie CAMERA starring Bo Bridges, which tells the story of a non speaking young boy. Thanks for joining me today and I’ll see you next week.

The post Episode #103: How AAC Devices Can Connect Your Child to the World appeared first on Water Prairie.

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In this heartfelt conversation, Tonya Wollum sits down with Julia Pearce, a dedicated advocate and mother, to explore the challenges and triumphs of parenting a child with epilepsy. Discover the incredible resilience of a mother as she navigates complex medical systems and celebrates her child’s unique spirit. Learn valuable insights, find inspiration, and connect with a supportive community. Join us as we delve into the world of special needs parenting and uncover the power of love, hope, and determination.

Connect with Julia:

Purchase Julia’s book: https://amzn.to/3WmQuck

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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/

Meet Julia Pearce, an inspiring presenter and author about advocacy, personal lived experiences, and communication. Julia is dedicated to sharing her space and story to help others.

Julia is a well-known presenter at local and national conferences. She writes about communication, advocacy, and her own experiences.

Julia authored a powerful memoir, sharing the life of her son, Dallin, who lived with multiple disabilities. With decades of experience working in education and assistive technology.

Full Transcript of Interview:

Tonya: Can you tell us about Dallin and um, maybe start from the beginning and let’s look, look at those really early years.

Julia: Oh, I love talking about him. So, thank you. Thank you for letting me start with that. So, Dallin is our son, and his experiences, his life started when he was just a little fun, little dude.

And I call him a dude cause he knew he was, he faced life, um, full on into the wind, he loved to just look and experience and go through, you know, Every toy in his room and then look at things with a calmness and then life changed right before he turned two. He had an unexpected, what they call the catastrophic illness.

And of course we didn’t know what that meant, but what happened is the week before he turned two years old, he started having, um, seizures and it started one day when he was home with his dad, I started a new job. So, I had no idea what was going on, but our marvelous little, almost two-year-old started having seizures.

And so, emergency response was called and they had no idea what was going on. My husband took our son to the doctor. They saw no reason for it. And so, they sent him home and said, this could have been one of those one-time occurrences, and then they came and got me from work and I said, what happened to you two?

And they said, you’ll never believe it. And I surely did not believe it. Well, what happened next was he woke up the next day and could not walk and could not speak any longer. He could not get that cereal to his mouth. And we called the doctor and they said, get to the emergency room. What happened then is he was in the hospital for the next nine days.

He continued to have multiple dozens and then hundreds of seizures that until they got controlled, caused just massive chaos in a little teeny tiny boy. None of the doctors could figure out what was going on. And that was the start of a change in our life, and how we began to figure out how really cool this little dude was because the doctors did not think he was going to survive this.

Again, they called it a catastrophic illness. And we were these young, knew nothing parents. We had gone from, sure, let’s put Cheerios out and try and get a kid to eat broccoli. And then we ended up in the hospital. This illness took all of his development. It took the ability for him to walk or talk or eat or sit up or even hold his head up and they had no idea what was going on.

It was nothing they could find a reason for. And yet he got up every time after a doctor would say, we don’t think he’s going to regain or start again or do something. And our son, because these doctors were talking around his little crib. And somehow, he would look and say, are you sure? And then he would get up the next day.

And one time specifically, he had what they called a taxia, which was, um, they describe it as just loss of, um, Neurological control and movement, and he could no longer walk again, holding up his head. Wasn’t something he could do any longer. He had lost all of those skills. He got up the next day, pulled himself up to the side of his crib, and climbed out.

He wasn’t in a crib any longer at home. I called the nurse. She got an IV pole, and we were off, not crawling again, but running. The doctor soon heard. And they got him a helmet because he was still having so many seizures. And that was the beginning of us learning this whole new world. What his life then told us about him was that he was going to do some really amazing hard things in this life, and we didn’t know what that was. Once we figured out that he was going to survive, he did do that, and then they sent us home, and we began again with this powerful, teeny tiny, little marvelous young boy who started to show us like, are you coming? Cause I’m going.

And that’s how he continued to tell us who he was going to be. He did regain the ability to walk. He did learn how to do many things. He didn’t learn how to speak with a vocal voice, but he did learn how to communicate using a lot of, um, systems for communication, including, um, sign language and a lot of things.

I was going to ask if he did sign. Yeah.

He did. It was his first mode or way of communication, even though he could not use all of his little muscles. They’re intrinsic muscles in his hands. It was still his choice of what he chose to use as communication. We did therapy from then on out. Met very many doctors as his disabilities started to increase and pile on one another.

He never cared. It was like, so we’re going to play. We’re going to go. We’re going to choose this next thing. I’m going, somebody’s got to take me, and let’s do this. He was an incredible soul.

I talk a lot about this, that a lot of our kids, you see those personalities so early.

Dallin showed us from his very first moments that, hey, I am here.

Let’s go. Life is grand. And then when he survived his illness. Hey, let’s go. I am here. Life is grand. It looked very different and yet we were there for it and we needed to learn a lot of things and we did.

So, these are massive seizures that he’s having to have that many. One after the other and, um, you know, as young parents, did the doctors explain to you what this was other than saying he can’t do this and that he’s already proven wrong.

But you know, how did you even get to the point of understanding what they’re talking about and what that really meant?

So, in the hospital, it was pure survival for real. It was pure survival. They placed so many IVs in him that. Veins collapsed, and I’m sharing that because I think you’re with an audience that can understand those words.

Uh, so, we had so many medical interventions and so many tests. They did everything to try and find, we were in survival mode. And so, when a doctor or a specialist or a team would walk in. I was taking notes after notes, tracking seizures and what test is next. And is it with or without what they call contrast on an MRI, or are we going to talk to this group next?

And then they sent us home. It is, they get you out as quickly as possible. You do not want to be in the hospital for very long. And they did that. That was 31 years ago. We survived the hospital with a lot of. Tender care from the people around us, including really incredible medical staff, kind people who tried to bring in toys and ways to divert him from the sheer chaos he was in.

And then we went home and we’re connected with early intervention, which is birth to three. I had no idea what these things were. And so, we learned as quickly as we could. I learned as quickly as we could, taught Dallin how to walk again and how to eat, and we were happy that his hands could come together again, and it all was very perplexing, and we were grateful.

So, you had an early intervention. Was he on medication that could control the seizures better?

So, for periods of time, seizures are the beast of life, in my opinion, so, he can, or he could be on medication and then he would break through the medication and we would see more seizures and you would change the, The level of the medication, or we would add another one or take one off.

And that was the dance we did for his lifetime. And that’s it. The seizures were his nemesis forever. They usually are with people. His seizures were, um, intractable, meaning they could not treat all of the levels of his seizures. So, we treated as much as we could, along with a lot of studies to see if there were other interventions that could have been helpful.

We looked at all of it for his level. It was called intractable, again, intractable epilepsy.

So, as young parents. I mean, you’ve gone through the trauma really of the initial diagnosis and, and all of this. Now you have some supports in your life. You’re going on, you know, several years have passed now. How did you cope with that uncertainty of the diagnosis and how the long-term impact that was going to be on him?

Again, when he was so little. Um, in those, those three to four-year-old, we were trying to just keep on top of the, the medication and when to give it and figure out what he could eat and how we were going to get him to eat. Food was really kind of tricky again after he couldn’t swallow. We were trying to do those things again.

And then when he got into early elementary years, so, we got through preschool, preschool was a lot of. Learning time of, um, what is this? Why am I sending him on a school bus? You gotta be kidding me. I’m going to do this. And he loved it. He was this insatiable learner of life and let me go and do this and play in water and sand and mud and be around kids who make me laugh.

I watched him do these things occasionally, and it was joy for him and very hard. He needed help to hold onto the crayon and open his juice and sometimes get that cookie to his mouth, but it was a cookie, so, sure, I’m going to do this. And so, then we learned the system of education through going to trainings.

And I would talk to my husband and say, you’re never going to believe there’s this law. And it was the Individuals with Disabilities Education Act. And he said, there’s a law so kids can go to school? And I said, it’s the coolest thing ever. And then we kept going. And I say we, because it was always, I learned and then shared with my husband and he, we both became open advocates, and let’s do this together for our son.

You’ve mentioned, um, when you provided your information about your story, that Dallin faced a second illness later in life. Now, was that in his early teen years? Is that correct?

Yeah, he was about 13 or 14 years old when a secondary, what they called a muscle wasting disorder.

We never did find a reason for that to happen. He started losing strength and muscle and ability to first use his leg muscles. And then it went into his hands and then it went into all of his internal muscles. And that happened when he was a young teenager. So, then we continued to add supports for Um, people to help him walk So, he would hold on to somebody’s arm and then he would help push somebody else’s wheelchair because he was not going to sit down in that wheelchair.

He helped people. He did not like to use a wheelchair. There was no way we were going to get him to understand how to use a walker. He also had an intellectual disability along with the medical needs that were happening that did start. When he was a young teenager and progressed through from about 13 or 14 years old for the rest of his life.

So, this is just really unusual that both, there’s not anything you can point to say, this is why either of these situations happened.

I know. And when he was in the doctor’s offices, we had one marvelous doctor who would say, Oh, he’s such an enigma and say it with the tenderness of like an uncle.

Dallin also had a blood disorder. He developed osteoporosis. He had that intellectual disability and used many things for communication. He was noisy. Like he could holler at you, but he did not have expressive language that was spoken language. Um, but he did have communication systems that he used very effectively.

He also had, um, a few other things because why not just have a list that was this long. And they never found a reason throughout all of his experiences that could have. Told us why it all started. And at one point we said we were done looking. There was no genetics, there was no markers. Every five years or so we would go back because genetics is a continuing science.

And then, um, he actually told us he was done with all of that. Malarkey. He told us he was finished with it one time, and I said, That’s fine, we’re done for today. And he stopped me and said, I’m finished. And we said, Okay, we gotcha. And we stopped with all of the testing. And he was a young adult. You get to say when you’re done. You get to tell your mom, I’m out. I’m out of here. That’s what he did.

Well and at that point, was it important to him to understand the reason behind it? Maybe not, maybe not, not worth going through the testing process every time and all the, he had enough meetings that he was having to have already.

It wasn’t important for him and it low, no longer was important for us. It was Dallin. Dallin is who we followed and who we continue to be right in sync with. If we could follow that rhythm, joy.

So, I want to switch gears a little bit. You’ve, you’ve referenced a couple of times, that Dallin is not with us now. Did you have time with him to talk about that before he passed?

Yeah, he did not have that level of understanding. That we could talk about it, but he did know that he was understanding that something was changing. And it’s phenomenal when we got out of his way, which we did and needed to do a lot of. Just get out of his way. It was not about us. That’s a learning curve for, I think, a lot of families with and without kids who have disabilities.

You got to get out of their way. When we got out of his way and let him lead us, when he told me that day, I’m finished. And he signed, finished. It was so distinct. Stopped, looked me in the eyes and said, Mom, finished. It’s like, yes. We canceled everything for six to nine months.

Wow.

And like every test, every lab, every appointment and chill, stop, played a ton. We didn’t stop playing cause that’s the pulse of our lives. So, he knew something was changing. He did finally um, stop doing some of his loved activities, such as mountain climbing and snow skiing and horseback riding. These are things he had done since he was probably four to six years old. He did know that he was getting weaker.

We didn’t have the opportunity to speak with him with a team of, let’s say we were with palliative care, which is a group of individuals that you get to. And I say, get to on purpose, if you have somebody who needs extensive medical support during, um, the type of illness that Dallin had. It was a degenerative illness.

Dallin didn’t come to those appointments, but we sure watched his body cues. When he was tired, we went to school late, or they called me and said, he’s just told us he’s done for the day. And which meant he was finished and got his backpack and said, call mom. Right? He like, he was very exact or they just watched him and said, he’s not looking great.

We didn’t have the opportunity to do those for those extensive conversations, but we did extensively and consistently watch for signs of fatigue and his body changing and the large muscles getting weaker, which means we did eventually get him a wheelchair. He did learn how to use it for a short period of time.

Did mostly help other people, including us at one point. It’s like, I got to push somebody. So, you’re it. Um, that was his muscle memory. That was his go-to in life. That’s how he worked in the world as he did things and served and helped other people as his joy of the world rotated. That’s how he did it. We watched him.

Such a cool kid. I love hearing about him.

So, cool.

And I’ve seen pictures that you’ve posted on Instagram about him. So, I’m picturing him as you’re describing his personality with it.

He’s so cool. I do want to say he was also tough as nails and as determined as a hornet when things were hard and he was confused and it would, like, he was the toughest, gnarliest dude. Which is why he was so cool. He was like, roar. And then, hey, how are you? In the same blink of an eye.

You had those early years. You had all the support. He was in school. You had the support with a huge IEP team. You had the medical team that was working with you. As you approached the end, did you have support?

And what type of support did you have for yourself? You had the palliative care, but did you have support? And anyone that you would recommend that another parent in your shoes needs to make sure that they have them aligned with them as they’re going into that last phase.

Part of what we found and what I found is not only people for and with Dallin, but for and with us. So, I use those, like, what did I need with me? It was my friends who I could say, this is so bizarre. And sometimes it was people who I had just met. Sometimes it was people who I had met when our son was very young. And I was trying to figure out these service systems, our systems for people with intellectual developmental disabilities, or our mental health system, or the people who could say, I don’t know what you’re going through, but wow.

The people who could, um, withstand it and not everybody could at his end of life. Uh, we did have services from our state agency for people with intellectual disabilities for a period of time. We were on the waiting list with that state agency as well. It’s how things work in our state. And yet, um, I wanted to put Dallin in bubble wrap and just say, he’s mine.

I’m going to stay here. I’m going to look at you. And he was like, get out. You got to go. He really would. He would lead, guide you out of the room. And yet we needed to watch for an increase of all of his medical needs. So, we had supports like a closed caption camera, and we had two people that would come and make it so he didn’t have to be around me 24, seven, cause he was like, mom, I’m going. You gotta, you gotta go somewhere.

He really would make me leave the house and somebody else would come for maybe one or two hours a day at the, the last few months of his life. And so, I would, and maybe go around the corner while somebody was in the house in case the medical needs changed, but he was like, please.

We’ve talked some of the season about self-care and how it’s not a spa day or anything like that. Sometimes it’s. In your case, just going around the corner, maybe sitting in the car or standing on the corner. Um, it might be taking a short walk, but, um, but I think it is important and he was willing to give you that time too, that, that, that you needed to get out of the house, um, whether you agreed with him or not, it probably did give you a better perspective coming back in again.

He, he was so powerful. He taught so much by his. Pureness and he was a stinker. I’d be like, oh my gosh. And he did, he, he gave us, and he also caused like trembling of, I’m not going to survive this, we did.

Well, I’d like to transition, um, to the, um, the advice time of our interview. I’ve. This season, I’ve been having each of my guests close by giving some advice to the listeners, um, uh, related to the topic that we’re talking about.

And I have three statements that I’m going to read to you and have you repeat and answer the end of it that stays open, however you want to. There’s not a right or wrong here. The first one I’m going to give you is, the hardest thing about advocating for my child with special needs was…

The hardest part about advocating for my child with special needs was the systems we had to work through.

And when I say that, I mean, Dallin was not the hard part. Figuring out the ins and the outs and the right door and the right wording was where the hard parts came. I could learn who to talk to and if I didn’t say the right word, they would say wrong door. And then I would go back and I would say to a friend, they told me it was wrong and they would say, did you say this word?

And I would go back. That was what the hardest part was for me is if you did not find the right word and the right door, the barriers were massive. So, I found the right words and I found my right connections and my right friends who became mentors and who became advocates with me. And. That’s how it became less hard.

All right. Second one. One thing that surprised me about my child’s resilience was…

One thing that surprised me about my child’s resilience was how natural it came to him. It was a part of his essence. So, I mentioned the time that the doctors were around his crib and had thought he’ll never walk again.

And the next day he did. It was natural for him to be. Do something so hard and get up and start again. He did that for his lifetime. One time he was sick with pneumonia for four months. And I thought, okay, today, and today, and today. And he was home for those four months, so, his oxygen was just at that level.

The fatigue was debilitating. He would wake up, try and eat, And go lay on the couch and we would pull the sofa bed out and he would watch a movie that made him grin or chuckle or stay awake for a little bit longer. He did that for four months, time and time again, nothing stopped him until he decided, I think I’m tired.

It was the same thing, how natural, he just got up and said, Today, I am here, let’s go, how are we going to play alongside every hard thing? And resilience means you’ve done something hard and you get up. And for him, it meant, I’m going to find joy.

I still can’t get over at age two that not even 24 hours, he’s told he’s not going to do this.

And he’s, they’ve got to find a helmet to keep him safe now because not only can he do it, but he’s going to go not walking, but climbing over the top of the crib. All right. So, the last one that I have for this section is if I could tell parents who have a child with a degenerative illness, one thing it would be…

If I could tell parents who have a child with a degenerative illness, it would be to be in the moment. Again, everything I have learned about this was being alongside Dallin. And when I saw this most powerfully is when he was skiing on a mountain. And he went from toe clip skiing, which meant they really did put a clip on his toes of his skis, when he was four and five.

To flying down the mountain in tuck with the instructors flying out him. I was never invited on the mountain with him. He would be, I don’t think so. You are not invited to, at the end of his skiing experience, he was in a bi-ski, which means he was sitting and had outriggers with somebody pulling him along.

And he went down the mountain one last time, flew down the mountain on a black diamond, which means it was a pretty big hill. One time he signed finished to the instructors. They knew him very well. We had been on the mountain for a dozen years. He signed finished. And they listened.

Julia, that, that’s been fantastic advice that you shared with us. Are there any projects that you’d like to share with our audience, and tell us how they can get in touch with you too, if they want to follow up with any questions for you.

So, I can be found on social media, I’m on Facebook and Instagram. I’m also on LinkedIn. I have a website at juliapearce.net, that’s P E A R C E.

I do have some things coming up. I have my book is on my website. The book is The Boy Who Became More Than We Could Imagine. I do have a second one coming. People have asked, so, what does it feel like after a child is no longer here? And I said, wow, yeah, that one is coming. It actually was planned at the same time.

And then I have another project that I have coming up for parents, family members, siblings, after somebody passes away. Those are the things I have coming.

Well Julia, thank, thank you for sharing your story with us today and, um, being willing to be so, so open and honest with me.

It was a pleasure. Thank you so much.

The post Episode #102: Parenting a Child With Epilepsy: Dallin’s Story appeared first on Water Prairie.

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In a recent interview, 17-year-old Evan Wilkerson shared his inspiring journey towards the 2024 Paralympics in Paris. Despite being visually impaired, Evan has excelled in swimming, showcasing remarkable determination and talent.

Hailing from Wake Forest, North Carolina, Evan began his swimming career at the age of six and is now a member of the New Wave Swim Team in Raleigh. His classification as an S12 swimmer means he competes with other athletes who have moderate visual impairment.

A turning point in Evan’s career came when he qualified for the U.S. Paralympic team after a stellar performance at the Parapan American Games in Santiago, Chile. There, he not only secured a silver medal in the 100-meter backstroke but also surprisingly won bronze in the 100-meter breaststroke, an event he had minimal training for.

Evan’s journey to the 2024 Paralympics in Paris has been marked by intense training and unwavering mental fortitude. He emphasized the crucial role of mental strength in overcoming the physical demands of the sport. His dedication to his craft is evident in his rigorous training schedule, which includes early morning workouts and weightlifting.

As Evan prepares to represent the United States on the world stage, he expressed both excitement and nerves. He shared insights into the training camp he will attend before the Paralympics, highlighting the importance of altitude training for enhancing athletic performance. Evan’s story is a testament to the human spirit and the power of perseverance. His journey is an inspiration to athletes with disabilities and a reminder that with hard work and determination, anything is possible.

Support Evan’s Paralympic Journey: https:/www.givesendgo.com/EvanCompeteswithTeamUSA/donate

Follow Evan on Instagram: @newwavewilkerson_evan

Resources to Understand Paralympic Swimming Terms:

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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/

Evan Wilkerson is a 17-year-old athlete from Wake Forest, North Carolina, who will be proudly representing Team USA at the 2024 Paralympics in Paris!

Evan’s journey to the Paralympics began at the young age of 6 when he joined his first swim team. Despite having Leber’s Congenital Amaurosis (LCA), a form of visual impairment, Evan has never let obstacles slow him down. He currently trains and competes with the New Wave Swim Team in Raleigh, NC, and his dedication has earned him a spot on the US Paralympic team. Evan competes in the S12 classification for visually impaired swimmers.

When Evan isn’t in the pool, he attends the NC Virtual Academy and stays active at his local Church. In the future, Evan plans to continue swimming competitively while pursuing studies to enter full-time ministry.

Full Transcript of Interview:

Evan: The biggest surprise for training for the Paralympics has really been how mental it all really is.

Tonya: From lane lines to Paris. Take a deep breath and dive into the inspiring story of Evan Wilkerson, a 17-year-old Paralympic swimmer ready to conquer the pool and represent team USA in France.

Evan, welcome to Water Prairie.

Thank you for having me.

Evan, you interviewed with me two years ago during episode 21 in season one, and you shared with us then about having a rare genetic eye condition that’s caused you to lose a lot of your vision. And listeners, if you haven’t seen that interview, be sure to click on the link for episode 21 and watch that one.

He shared a lot during that interview about, uh, the adjustments that he’s made in his training methods as a swimmer. And he also talks a lot about tips on how to get your child started in swimming, especially if they’re visually impaired and if they want to get into competition, what, what they might want to do.

So the link will be in the show notes. You can go back and hear more from that. But I want to catch up, Evan, with where you are now. How old are you? What grade are you in school? Are you still going to the virtual charter school?

Um, I’m 17 now. I’ll actually turn 18 shortly after I get back from Paris, and, uh, I’ll be a senior this year. So that’s kind of exciting. One more year.

Are you making applications to schools yet? Or what are your plans for after graduation?

So not yet. Um, right now my plans are to finish up high school and then I’ll go out to Colorado Springs to go to the Olympic and Paralympic training center. And I’ll live there for a year.

Just because after 12 years of school, I’m kind of done with school, and I want a break. And so I’m just going to go and swim for a year and then I’ll go to college, which I am looking. But, um, finding a college that meets all the requirements that I want in a school is rather difficult, especially. When you want a Christian school that has a swim team, those are a little hard to find.

Do you know what you want to study yet?

More than likely, I’ll study some form of theology. Um, what sort that might be, I don’t really know yet. All I know is Something in that field, I guess. And, um, I want to be a youth pastor and maybe eventually work my way up to being a senior pastor.

That’s what I was going to ask whether you had an area of ministry that the two were, were looking at.

Well, that’s, that’s very exciting. I know you’ve always been in, been very active in your, your youth ministry at your church and awesome. I’m excited to see, see where you’re headed. The last time that we talked about your swimming. I went back and listened to, to the interview this week just to kind of catch up and make sure that I was remembering it correctly.

You had just competed in your first Paralympic meet in Augusta, Georgia, and you had been to Colorado and Florida for national swim meets. And so during that interview at the end, you shared some of the goals that you were working toward. I don’t, I don’t know if you remember, or if you’ve, if you’ve listened to it yourself lately, but one of your goals was to meet the emerging times that you needed to get to the higher training level. How long did it take before you met those emerging times?

It was actually very soon after we did that interview. We had the 2022 National Championships in Charlotte. And so I went down there with one of my coaches, the head coach of my club team came down there with me and, um, a couple of my friends came down as well and had a great meet and got one emerging time standard, and then I ended up getting, uh, two more in April of 23.

Listeners, Evan has been breaking personal best times since we met him last. It’s been almost every time that I see you swimming in another meet, you’re hitting another personal best, um, which has been really exciting to see, to see breaking out and just really going. In fact, I think you just met another one. Is that correct?

Yes, I just actually met, uh, three more. Um, if you want to get technical, it’s technically five more. Um, since it was a prelims and finals meet, but I only swam three events. Um, those events were a hundred backstroke, a hundred freestyle and a hundred butterfly.

And I ended up having best times in all of those every single time I swam, um, except for one time in the hundred free.

So the emerging times you hit right away, when did you, now let’s see, you Paralympic swim meet, but was that a. junior level. What was it before we met the last time?

So before we met the last time, it was mostly what we call open series meets, which is all U.

S. Athletes. There’s no time standards that you have to have to enter. Um, you basically enter, show up and swim. The only thing you have to have is a national classification. I had been to one World Series meet before then. I can’t even remember when that was. All I know was it was before we did our first interview, but, um, that was a pretty small World Series meet.

And that basically just means that other countries can enter and there are. Time standards, I think, but I’m not sure. Um, but that was a good experience to at least see a couple other international swimmers.

Was it listeners in the last two years, Evan’s been able to travel a little bit more. So you made the men’s U S team, correct?

Yes, I did. Last year. It was last November. Yes. Um, we went down to Santiago, Chile for the Parapan American games. And first event was 100 backstroke, which is my best event. It’s great. 100 back is the first event of the meet. And, um, I ended up dropping about two seconds and getting a spot on the national C team.

So C team. So is there an A, B, and C?

Yes. Um, I’m currently on B I’m very close to a,

and then, um, Chile, you meddled there, didn’t you?

Yes. I got a silver medal in the 100 backstroke. And then somehow, I don’t know how this happened. I’m not a breast stroker, . Um, I got bronze in the a hundred breaststroke, um, which I still don’t even know how that happened because before that me, I had trained no breaststroke, my breaststroke training, even if I did train, it usually consisted of a hundred with a 50 kick and a 50 swim.

So there was. Almost no training going into that.

So, yeah, because your, your events are the other three, right?

Yes. Um, 100 free, 100 back and 100 fly.

So how did you even get into that, that heat?

Basically, what happened was a lot of us as S12s, we will swim up to S13s. And so what that means is, um, as an S 12, we’re kind of in the middle of S 11 and S 13.

Um, S 13s tend to have a lot more vision than us. Almost every single 12 who went to that meet did, was we swam up, we had good enough times where we could swim as S 13s. Even though we were technically still 12s. And be able to race in that heat.

Listeners. We’re going to be talking about the, the, the S 12 as 13 that he’s referring to in a few minutes.

So, um, so stick, stick with us and, and you will learn more about that in just a minute. So having, first of all, congratulations on qualifying for the Paralympics in Paris. I mean, those who clicked on this, they’ve already seen the title. They know that the surprise is that you did make the team, but I want to find out a little bit more about that.

You were swimming. Um, back, butterfly and free, right? Yes. Okay. And did you qualify for all three strokes?

Yes, I did end up dropping a whole lot of time and qualifying for all three.

Nice. Nice. Let’s talk a little bit about the team itself. So, um, so in looking at the US. Paralympics team that’s going to Paris.

So that’s because, because I know you, you swim in a lot, a lot of different teams with, with different groups, but the thinking of the, of that team, do you know how many swimmers are on the team?

Yes, there’s 33 total. Um, there’s 12 men and 21 women.

Wow. Why, why so many more women than men?

It’s complicated.

The way that slots are assigned for swimmers is in total, there are 650 available slots for both men and women. So in total, it’d be 1, 300. So how those are allocated is if you have four swimmers in the top eight, that gets us four slots. And then if we have nine swimmers from ninth place to 16th place, that gets us another 4.

5 slots. And then anything below that counts as 0. 2 of a slot. So. We ended up getting 12 men’s slots and 21 women, just because one, we have a lot more women swimmers than men. And two, the women swimmers we do have are placed, um, generally a little bit higher than some of the men we have.

When you’re talking about how they’re placing, that’s,

That’s their world ranking.

What is your current world ranking?

Uh, sixth in the hundred back.

Wow. That’s impressive.

Thank you. It’s, it’s been a lot of work.

So you’re sixth in the world. Is that, but you’re on the B team?

Yes, that’s correct.

How many men are on the A team right now?

We have exactly two men on the A team right now.

Oh, okay. Okay, so it’s not like there’s 20 men ahead of you.

No, no, no, no. Um, the way that works is the national A team time standard is the same as third in the world’s time in each event. So, basically, you almost have to be top three in the world to be on the A team.

So, of the group that’s going, you have members that are A, B, and C?

Yes, we have members from all three teams.

Of the group that’s going, what is the age range? Like, who’s, who, who, or how young is the youngest swimmer?

We have me as the youngest, and I’m 17, um, and then we have people going all the way up to mid 30s.

You told us that the three events that you’re qualified for, will you be able to be part of a relay team as well? Or do you know that yet?

Yes, we will for the first time in eight years have a VI relay at the Paralympic Games. And we’re going to do the 400 freestyle. So we each swim 100 meters of freestyle, which that’s going to be, a rough day because that’s the same day as the individual 100 meter freestyle. So, um, that’s going to be a whole lot of freestyle.

Yeah. But you, you do more than that in practice

all the time. Yes.

You reference the S 12 S 13. Can you explain the disability categories for athletes in the Paralympics? Not just the swimmers, but, um, but the other category too. Can you tell us a little bit about that?

Yes. So. For other sports, it’s a little different.

Um, especially when you get into things like wheelchair basketball, where you’re only going to have people in wheelchairs or goalball where you have to be blind. Um, but for swimming, we have S1 through S14. So, S1 through S10 are your physical disabilities. Um, so amputees, viralysis, anything that physically impacts your body.

11 through 13 are your visual. So, 11 is the lowest and 13 is the highest. So, if you’re an 11, you have to wear blackout goggles to kind of even the playing field because How the 11s work is they have light perception all the way down to total blindness. And so someone with light perception is going to have a little bit of an advantage over someone who’s totally blind.

And so they all just S12 is what I am currently, uh, more than likely I’ll end up being moved to an 11 at some point in the future. But for 12, we swim with regular clear goggles, um, and tappers are optional for 11s that are required. And then 13s are more your low vision. Um, which that can be. A little shaky, depending on your classifying panel.

Um, if you’re because you can be borderline, like, you could be a borderline 13, kind of teetering on the edge of a 12 or, you know, we’ve had situations where someone’s been a 13 for a long time. And something happens, and they end up getting classed out of Paris sport, because. Either the panel things they can see too much, or they somehow gain vision.

Um, and then as 14 is. More of your intellectual disabilities. Um, I’m not super familiar with what disabilities are going to make up the S14 category, but, um, there are like some mild. Um,

I’m, I’m looking at the world pair swimming website as you’re talking through these and listeners, those on the, on the YouTube video, I’m going to put a link in the show notes to the, the page that I’m looking at now that gives you more detail about each of the different, um, classes.

And I’m also going to put in a link to the codes of exception, and we’re going to talk about that in just a minute, but Evan, I’m looking at this and it has like under the vision impairment. Classes. It has S and sb. What is sb?

Under each classification, there’s S, S, B, and sm. So S is your regular. Um, that just covers fly back and free.

SB is for breaststroke and then SM is for individual medley. And basically what that’s for is for the VI classifications, it’s not going to affect too much. But for other classes, especially the physical classes, Um, breaststroke has a much more different movement than any other stroke, especially in the legs, and so a lot of the times, if you’re, say, an S9, you might be an SB8, just because of the movement of breaststroke might make your disability more pronounced, and so they might move you down just for that one event.

And it’s the same for SM because Medley contains breaststroke. Uh, but that’s not always the case. It just depends on how severe it is and kind of how you deal with it with the, uh, event that contains all four strokes.

The exceptions that I was talking about, you’ve mentioned the tappers. What are some of the other exceptions that we might see in the VI Paralympics?

So specifically for VI, the only exceptions we really get are, we have a guide when we’re going up to the blocks. Um, that guide is oftentimes the same person as who our tapper is. And then for relay starts, we’ll have a starter, um, and they just hold our ankle and they just let go when we’re supposed to go.

When you’re in Paris, who’s going to be tapping for you?

When I’m at an international competition like that. Um, so that’s of course your Paralympic games, your Parapan American games. World championships, Pan Pacific games, all that kind of big stuff. Um, you can’t provide your own tappers. And so the team has a whole bunch of coaches.

They travel with us. Um, they work with us, they train us, and then they also serve as our assists while we’re at a meet. Um, so for me, of course, that’s tapping. And what I’ll do is, um, I’ll meet with a lot of the coaches. They’ll try tapping me because a lot of the times you’ll get people who you really, really like it when they tap you because they do it just right.

And it feels great. And then you’ll have some people where you’re like, Oh my gosh, please don’t tap me in a race. That was bad.

Well, I was thinking about that. It could make, it could make or break a competition if you have the wrong tapping.

Right. And it often does. And so what I’ll do is I’ll go through all the coaches.

They’ll try tapping me. And then since I’m the only S12 going also, I’ll get first pick among the tappers, um, for my event. And there are 2 or 3 people who have tapped for me before that. I know are going. Um, and so that makes the process a little bit easier because I know these people, they know me. Uh, we’ve worked together a bunch before. So that’s. It makes the process go a little smoother.

When do you leave to go to the training center?

I actually leave this Sunday. So that’s really exciting. Um, also very hectic trying to pack everything I’m going to need for three or so weeks. And hoping I don’t forget anything.

When you leave on Sunday, will you be back again? Or will you go straight to Paris from there?

I will be back again, just to see family, see friends, all that kind of good stuff. Repack and then we go to Germany for. Time zone, acclimation and training. And then from Germany, we go directly to Paris

. So you have enough some time there before going while you’re at the training center. Do you know what the schedule will be while you’re there?

I’m going to be in the pool six days a week, and then wait. Training times are pretty much just up to me. The rest of it is very up in the air. And it kind of depends on what I do, what I opt into, what I opt out of. And then if there’s any appointments that I want to do, because they.

They will provide basically any sort of sports medicine that we want, um, massages, chiropractics, anything like that.

Are you going to be traveling on your own or is anyone from the family going with you until you get checked in?

No, I’ll travel on my own. For most of this process, actually, um, my family will come to Paris, but I’ll already be there.

I know you’re excited about going. Are you nervous about going at all? How are you feeling?

I am a little bit, um, just because it’s not every day that you get up and, you know, you race people who are first, second and third in the world on international television and really hope you don’t screw up. But as far as the actual swims go, you know, I’ve kind of conditioned myself.

You know, it’s just another swimming, swimming is my job. It’s just another day in the office, just on a bigger stage.

Um, I mean, you’re, you’re talking about wanting to do this for, for a year after you finished high school. So yeah, this is, this, this is your, your, your chance to not just shine, but. Just to give this a try and you know, what, decide what role this is going to play for the rest of your life, right?

When I was your age, if I were about to head off for three weeks, that’s like going to camp for three weeks. So a lot of fun will be there. You’re and, and you’re going to be in what my son always calls us happy place with baseball. You’re going to be in your happy place in the pool with like minded individuals,

Right. Right.

The support of the trainers there, Is probably gonna be more than what you’ve maybe seen before. I don’t know if you’ve been in that environment before.

I have, um, I’ve actually been up there several times before, um, for about a week, each time they try to get the national team up there a little bit, just because one, the altitude is so high, it’s about six ish thousand feet, give or take.

Um, and when your body’s at altitude, it’ll do some strange things that are very helpful when you come back down from altitude and, um, it’ll give you more endurance. It’ll strengthen your cardiovascular system. Um, even more red blood cells. Lots of really good stuff. That’s really helpful for especially me, like Paris, where you want to be your best, it’s good to train at a higher altitude first.

I’m going to transition. Now, each of my guests, the season have been giving some advice to our listeners by finishing some open ended statements. The first one that I have for you is the biggest surprise about training for the pair Olympics has been…

The biggest surprise for training for the Paralympics has really been how mental it all really is.

You know, when you think of sports, a lot of people, especially spectators, nothing against you spectators, just saying, um, a lot of you guys see the physical part of it. Um, and a lot of it is mental. I tell a lot of people swimming is about 2 percent physical and 98 percent mental. Um, it’s hard to get up at 4 30 in the morning in the summer to go train and then to come back home and lift weights.

and repeat for months. Um, but really it’s not physical. It’s mental because it would be very easy to lay in my nice warm bed. Even though I’m not really tired, I have plenty of sleep. Um, but you don’t want to get up that early. Um, and go jump in a cold pool or a very hot pool, depending on where we’re swimming and work because a lot of us just want comfort.

Um, and so that was a bit of a big surprise to me, especially in the last couple of years. I’ve started figuring out, Hey, this whole thing is just a mind game. If I just play the mind game, we’re good. We’re going to make progress.

So the next one I have for you is the most important thing I’ve learned about myself throughout this journey is…

The most important thing I’ve learned about myself throughout this journey is I can take a lot more than I think I can. And that’s really important, especially from just from a swimming standpoint and also from a life standpoint, um, from a swimming standpoint, it’s more of going out fast as hard and you don’t want to do it, um, because you don’t think you’re capable of doing it right.

But in life it’s the same thing. You know, you don’t want to do. Such and such task or go to this job interview or be on a podcast or anything like that, because, you know, a lot of us just think we’re not really qualified to do it, or we have what’s called imposter syndrome. And I’ve really learned about myself is.

You know, it doesn’t matter what my mind says. If I think I can do it, I should just do it. And even if I think I can’t do it, I should just do it because what’s the worst that can happen.

Right. If you, if you don’t shoot for something, you’re never going to reach it. Right.

Right.

And along that same line. If I could go back and tell my younger self one thing about pursuing swimming, it would be…

If I could go back and tell my younger self one thing about pursuing swimming, it would definitely be to start waking up early and training more because really, in the past couple of years has been the only time.

Well, not the only time, but my training load has gone up a lot, um, mostly because I’ve started figuring out ways to kind of cheat the system, um, ways to add more time to my day. And, you know, if I could go back and tell my younger self, hey, you need to start getting up earlier, especially when you’re in school and you need to go lift weights.

And then you need to do school and then you need to go swim and then you need to come home and then stretch and then do it all over again. Um, that’s really important. And even in the summer, it’s kind of reversed. I get up, I go swim, I come home. I do whatever has to be done that day. I work out, I stretch, I repeat.

Um, So I think I’d really just tell my younger self, get up early, start the day. Um, don’t be slack and just do the work.

So the final one is success for me. Isn’t just about winning medals. It’s also about…

Success for me. Isn’t just about winning medals. It’s also about. The experience and kind of being up on the world’s largest stage and being able to represent my country, uh, to the best of my ability and to go out there and really just see what happens.

And it’s also about kind of, I guess, trying to spread a little bit of my mentality of, if you can think about it, you can do it. So, you know, get out there and do it and don’t quit when it gets hard. That’s really important to me. That’s kind of what’s got me through a little bit. And also, I guess just to be able to represent God as well, because he’s the one who’s put me in this situation.

Um, I could not have done a lot of this on my own.

Before we go, share with us your social media so that those that are listening and want to follow your journey can, can know, cause I know you’re on Instagram. Is that your main social media?

The main way. For me is Instagram. Um, it’s new wave, Wilkerson underscore Evan.

Um, all that’s one word except for the underscore. Um, and it should pop right up.

I’ll put that, that link as well in the show notes for, for those who want to follow you, cause I know you’re, you’re, you’re really good about posting things. As you’re going.

Yes. I try to always post whenever I’m traveling or. If there’s some terribly hard set we do in practice, a lot of the times I’ll throw it up on my story and, um, I try to stay connected to the people out there.

A couple other questions I had for you. You said your family’s going to be able to go to Paris. So is everyone going?

My mom, my dad, my sister, and my grandma, which is my mom’s mom. They’re all going to go. Um, so that’s really exciting. Uh, it’ll be good to have all of them there.

Will you check in with us while you’re training so we can, can update our listeners on what’s going on while you’re during your training and while you’re in Paris?

Absolutely. I’ll be posting while I’m training. Um, posting in Paris, posting after Paris, posting in Germany. Um, so I can send you those, I can send you extra stuff.

And then whenever you get back, let’s see if we can, can have you come back in and give us an update on how everything turned out. Of course, everyone’s gonna be watching you anyway, but I know they’re going to want to hear that.

Um, the other thing I wanted to say to listeners. Evan and I were chatting before we started recording. He is open to speaking publicly about his experiences. So, um, so connect with him if that’s something of interest to your organization. If you have a group that, that you’d like to have him share what he’s learned and what his journey has been after he gets back.

Yes. If you want to reach out now and schedule something, reach out after. Um, it’s all the same.

And if you’re hearing this later, after everything is said and done, um, always a good, a good topic to have a young adult come out and be able to talk about something like this. So, um, So, yeah, so that’s, that’s nothing I’m, I’m, I’m hoping will work out for you.

Well, Evan, thank you for coming back in. I’m very excited for you and we’re going to be cheering for you.

Thank you. Thank you for having me on again. It’s been great to be able to reach out and try to give back a little bit. To the disability community,

Evan’s story is a powerful reminder that anything is possible with dedication and a positive attitude.

As Evan prepares to take on the world stage in Paris, there’s one way you can be a part of his incredible journey. Evan’s family is working hard to cover the cost of training and travel to Paris to cheer him on. A family friend has set up a fundraising page to help ease the financial burden. If you were inspired by Evan story and want to support his Paralympic dream, please visit the link in the description below.

Every contribution, big or small, makes a difference. Thanks again to Evan for joining us today on the Water Prairie Chronicles. We wish him all the best in Paris. Don’t forget to subscribe for more inspiring interviews and I’ll see you next time.

The post Episode #101: Gold Medal Mindset: Blind Swimmer set to represent USA in 2024 Paralympics appeared first on Water Prairie.

Find the full directory at waterprairie.com/listen.

This interview explores the challenges and opportunities faced by students with ADHD transitioning to college. College professor and ADHD coach Dr. Lauren Kerr-Heraly shares her insights on:

   • Executive function skills: These crucial skills, like time management and organization, can be underdeveloped in students with ADHD. Lauren emphasizes the importance of identifying and strengthening these skills for college success.

   • Building a support system: Students with ADHD benefit from a strong support system in college. This can include disability services counselors, tutors, coaches, and of course, parents. The interview highlights strategies for effective communication and collaboration within this support network.

   • Self-advocacy: Lauren stresses the importance of students taking ownership of their ADHD and advocating for their needs. This includes reaching out to professors and disability services to discuss accommodations.

   • Positive approach to ADHD: Focusing on the strengths of students with ADHD is a key theme. Lauren highlights the creativity and fast thinking that can be hallmarks of an ADHD brain.

Bonus resource: Lauren offers a free infographic on her website, Altering Course outlining the “four S’s of college prep” – essential executive function skills for transitioning to college.

This interview is a valuable resource for parents of children with ADHD, high school students with ADHD preparing for college, and college students with ADHD seeking strategies for success.

Download Lauran’s FREE Infographic! College Prep Essential Skills

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Support our podcast and help us share more incredible stories by making a donation at Buy Me A Coffee. Your contribution makes a significant impact in bringing these stories to light. Thank you for your support!

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/

Lauran Kerr-Heraly is an award-winning educator and author, mom of an ADHD kiddo, and advocate for inclusivity. She has worked in college readiness in American high schools, taught in international and British schools in England, and currently serves as a professor in an American community college. She helps students and parents develop a holistic approach to college success, which includes a focus on essential skills, executive function, and emotional awareness. As an educator an executive function coach, she works with neurodiverse students and students with disabilities.

Full Transcript of Interview:

Tonya: Lauran, welcome to Water Prairie.

Lauran: Hi there.

It’s nice to have you here today. Listeners, we’re going to be talking about, um, ADHD, executive functioning, college, all of the things that, that my family talks about a lot. And I love meeting another mom, another professional who understands some of the things that, um, that a lot of you are dealing with too.

We’re going to have a great time. Thanks, Tonya.

Let’s just jump in because we, um, we’ve already said we’re going to talk about ADHD, but we have listeners who have heard of ADHD before, but other than the, the letters, or they may know the full name, that may be all that they know.

And there may be some preconceived ideas that aren’t really accurate. Can you kind of in a nutshell tell us what ADHD is whenever a parent’s hearing those, those names and those, those letters?

Sure. So it stands for Attention Deficit Hyperactive Disorder. And there’s a, there’s a pretty large campaign to get rid of the “H” in that because the hyperactivity doesn’t describe everyone.

There’s multiple types of ADHD, there’s hyperactive, there’s inattentive, there’s combined. Girls, especially often don’t get diagnosed as early on because they might not show the hyperactive side of it. Um, but their focus is still an issue. So they’re typically people with ADHD have a hard time focusing.

They have a hard time regulating themselves and might have some additional difficulties with things like transition and sensory. So my family’s story is that when my daughter was seven, um, the, we were having, you know, some of the focus issues, a lot of emotional regulation issues that led us to talk to our pediatrician who suggested we get her, um, Um, tested for ADHD and it was pretty much, uh, you know, the, the neurologist spent about three seconds with her and was like, yeah, this is what she’s got.

And then ran all the tests. And, um, so it was, it was pretty night and day once we got her the proper treatment. And um, Behavioral modifications that she was a lot happier. She was not so frustrated doing better in school, et cetera. And in that process, the doctor said, so which one of your parents can’t focus?

And she said, daddy, daddy. Um, so this little seven year old, um, he told her, well, he should get tested. And my husband had kind of always suspected this about himself, but again, he’s not, he didn’t have the age. He didn’t have the hyperactivity. Um, so he did well in school. He never got in trouble, but he really struggled.

Um, and so he went and got tested and then he again got treated. And at 40, he said, I can’t believe I’ve lived my whole life without the, you know, without having the proper, um, treatment assistance to deal with this in my life. So, um, so it can present differently in different people. I talked to someone recently who said, you know, our, our kid is having X, Y, Z issues, but he can focus so well.

And what they meant was he could hyper focus or the, the term for it really is perseverate, um, that you focus on something that’s not helpful to the point where you can’t be pulled away from it. And that actually is a type of inattention. So Because it presents differently and it’s a very complicated, it is a spectrum.

Um, it can be difficult for some people who haven’t seen it or been around it a lot, um, to kind of diagnose, um, I don’t mean diagnosed, but recognized, I should say. Um, You know, it’s kind of funny because as a college professor, I have a lot of neurodiverse students have for years. And I couldn’t even recognize that my own child had ADHD because she’s my kid, right?

You know, this is why, even though I’m an executive function coach, I have, I do not coach my own child, that’s for someone else. So it does present differently. And when you’re close to a situation, it can be difficult to see, to think, you know, um, My child might have this. My spouse might have this. I might have this because it is a disability.

And that is something that it took me a while to kind of come around to, even like I said, having taught neurodiverse students for years, the fact that it is a permanent disability that can, of course, like the brains and muscle, like anything else, right? Like, there are a lot of things that we can do to provide coping mechanisms, et cetera, but it doesn’t disappear.

So that did take a It’s kind of a lot for me to get used to, but we’re all much happier now that we, we know both the disability side of ADHD and the superpower side of it.

It’s interesting too, in, in your family where you have the two that different ages, male and female, everything else with that and, and presenting differently too.

The studies are pretty interesting lately that it’s a, it’s a pretty high percentage of people who have ADHD. It’s also genetic. Um, you know, it’s not a hundred percent, but the more they study it, the more they’re seeing the presentations in, you know, multiple parts of multiple generations.

Well, and a lot of our families that are listening, they may have another disability that’s, that’s diagnosed, but they may be seeing some of the behaviors of ADHD and that may not have been recognized yet.

And, um, and that’s, that’s why I, I like bringing this topic in because It, you may be a parent that’s listening and this is the diagnosis and it may be all that you can handle right now, but we may also have others who are also looking at at multiple issues that that they’re trying to balance. And it gets hard sometimes for a parent to know, where do I focus first?

And how do I. How do I help my child the most? And I think there’s, and you can correct me on this, but I think there’s times of life that we need to focus more on them during some of those transition times and all maybe to give them some more skills.

Well, yeah. And transitions are huge and I do want to talk about that.

And I’ll just mention that when it was something like ADHD. There’s usually what we call a comorbidity, right? That there’s something else going on. Maybe it’s anxiety. Maybe it’s sensory processing disorder. It could be, um, oppositional defiance disorder. Lots of things can go on at once. But most of my clients will say until they treat the ADHD, they can’t treat the other things.

Um, because. That is what is taking their brain in so many different directions and it’s difficult to focus. So once that they can kind of focus, then they’re like, Oh, wait, this is why I’m anxious. Now I can work on the anxiety. Um, so I do encourage people if, if you suspect ADHD, do get tested, explore treatment options.

Um, You know, for us, it’s been a combination of medication, behavioral modifications, and changing our lifestyle really, um, that has worked for us. So, so I do think that there’s something to focusing on supporting the ADHD side and then that kind of freeing you up to to be able to help them, the other issues.

So, and along with that too, my son, now he’s, he shared his story during season one. So I can, can freely talk about this, this, this part of his life, but part of that conversation between him and I, um, we were going back through when he was eight, the, the psychologist. couldn’t tell whether it was ADHD or anxiety.

And so he did not have the, the diagnosis of ADHD until he was in middle school, but it was, it was, it was on the, it was questionable on it. And so they addressed it as anxiety. First, the anxiety is still there. ADHD definitely is there, but he was the kid that in kindergarten. you’d look around the room and his place was always the one that just exploded.

You know, so there, there were markers there pretty early with some organization issues that, that were not age. Um, uh, well, what, what is the word I’m looking for? They, they, they, they weren’t in line with it with his peers at the time. And, um, and so as he got older, it was easier for that. And I, I remember back during that time, there was a certain age that if the symptoms weren’t there by that age, that it wasn’t ADHD.

Is that still part of it? Like if it hasn’t shown up by age seven or whatever that was?

Not that I know of. No. And part of that is because it is a spectrum. And like I said, some, some of the markers that we used to live, that we used to sort of use when I was in elementary school ages ago, again, was like hyperactivity, right?

And that’s it. Um, so like I said, my spouse got diagnosed at 40. Um, and. Not because he And really because of my daughter, right? Um, so no one ever suspected that he had ADHD, you know, he kind of, like I said, maybe thought about that, thought this about himself, but it’s, it’s more of a, something that you probably have and maybe have coped with, or at it’s been kind of in the background because you’ve learned to deal with it or because you didn’t have, you know, Um, maybe an environment where it was super obvious, something like that.

So, but as you know, and I’d have to check the research on this, but as far as I know, that, that is a big part of it.

Well, the other thing too, that you mentioned that I found interesting, you said that they’re, they’re talking about. Removing the, the hyper part of it out of the, of the, the name. We had years where we had the ADD and the ADHD and ADD, and then now it’s only ADHD.

So we’re going to go back to the ADD now, or we’ll add some other letters in there.

Probably some other letters. Yeah. And it, you know, it’ll take the scientists a while to kind of agree on, on how to do it. But I know for a lot of people with ADHD, they, they feel like that doesn’t really define them. So there’s kind of a movement.

Yeah. So my, my understanding was the H did apply because of the hyper focus, not necessarily hyperactivity. As in running around and swinging from the rafters.

Yeah. Your, your brain is hyperactive. Yeah.

Now my daughter is not diagnosed. Um, I, I, if she were to test, it might come back that she does, but, and as you say, it presents differently a lot, a lot of times in girls.

But she was three years old and was reading already and would sit down and would do an entire first grade workbook from cover to cover without stopping. And it was hard to get her until she finished it to get her to move and to do anything else. So she always has had a very strong hyper focus, but it was being a girl.

It was always in the more appropriate. Area where you would get encouragement from that because, you know, she’s doing, she’s doing schoolwork when she’s little and she’s wanting to do, you know, she wasn’t watching TV and never coming to dinner. It was, was different. So we weren’t picking up on that either back then.

Oh, yeah, totally. And, and sometimes, oftentimes when we notice or, you know, when we suggest getting tested or something like that is when people are struggling in a pretty big way, whether it’s with school or their relationships or regulation or whatever. Um, so sometimes it takes us a while to kind of figure out what that is.

And people with ADHD often are very intelligent, um, you know, very high IQs to the point where, um, They, you know, they might need to be a grader to a head, but then their brain is probably not ready for that kind of a social environment. So there’s a catch 22 there as well. And that can be challenging.

When we’ve talked a little bit about the, the executive functioning skills being behind in past episodes. And, um, and so I wanted to talk about that as well, because, um, it’s kind of a good, a good point here with it, where academically, mentally, they may be, Beyond their peers, but like you’re saying, the social, social skills, knowing when to, to get up and down from their seat in the classroom.

A lot of times can be a reason that our kids are getting written up or being well, in my son’s case, he spent 33 days and in school suspension for. throwing away paper at the wrong time during his seventh grade. So, um, and that was the worst that the teachers ever told us that he did. It wasn’t anything really inappropriate.

But, um, but that, that part of it does start showing up, I think, more as they get into those middle school years when their peers are starting to do more independent things and, um, and can read those cues. A little bit faster with it. So, um, so executive functioning skills, how, how is it, is it a three year gap?

Is there a definite age difference there or is it individual to individual?

I think it’s individual to individual. And part of it is how their executive function skills have developed. You know, one thing that I emphasize when I talk to my, you know, Clients is that the executive function skills that are demanded of a middle schooler or a high schooler or a college student far outweigh what they can actually do, what their brains can actually do.

Um, so if they’re getting overwhelmed and they’re falling behind, it’s because their brains can’t keep up. And that’s for a neurotypical child. So for someone with. No, you know, someone who’s neurodiverse compound those, right? So the, what helps is to have the skills and oftentimes when they’re thrown into middle school or high school or whatever big transition it is, you know, that we call it, um, in higher education, we call it the unwritten curriculum that we just sort of assume that they’re supposed to know, right?

That they’re supposed to know how to take notes. They’re supposed to know how to organize, know how to manage their time. And they, uh, they often don’t. So. Um, because there’s not direct education on how to make those jumps with those skills. That’s when we really see students struggle. So I have clients who have ADHD or, you know, some other kind of neurodiversity and because they’ve been taught the skills and they’ve been taught some tricks on how to stay focused and organized and manage their time and give themselves grace when they don’t, then they actually do really well.

Um, so it’s less about. What they’re, you know, is there a definite, we’re two years, three years behind, like, is there a clock somewhere? Right. And more about, um, what you’re sort of being recognizing what you’re able to do, but also being, being very, you know, encouraging to yourself about what you are actually capable of doing.

You know, it’s interesting. One of the, um, one of my favorite things to do is group coaching and bring different people together of, um, generally they’re similar ages, but they, we talk about executive function skills and the group that I’m working with right now, working memory is a big part of executive function and that’s being able to kind of organize things in your head.

Um, that’s being able to, you know, understand systems of language of, um, of social systems, et cetera. But it’s also just plain old memory. Right. And that’s one of the things that we start with. And you know, that kindergarten toddler matching game that with the cards, right, where you turn over one card and you have to remember where the other one is, but it’s not a skill that’s actually taught so much.

Continued through education. And so, we actually spent quite a bit of time with this group working on just memory skills because they were, you know, they were saying, well, I can’t remember what chores I have to do. I can’t remember what, um, assignments that I have to do. And for one, we work on the organization.

We work on having a system that they actually like and will follow through. Um, most kids hate a plant, hate the planners that they’re given. And, you know, so, so they don’t have to use them like, well, so we come up with something else. Um, but then it’s also just like. Well, your memory needs to be put back into shape.

You need to exercise that memory. So, some of these things seem maybe quote unquote basic, but they’re actually not if you’re, if you’re not practicing them. So

I know for my son, he uses his iPhone and texting, um, as part of his, it’s a system that he’s put together. But if he has an appointment, he texts it to me.

And it’s not for me to remind him he has the, it has a documented now. And so, then he can go back cause he knows, he knows it’s coming up next week. He doesn’t use a calendar. He doesn’t use anything like that, but this is what’s worked for him.

Well, and that’s why I started my business because as much as I try to help my students with executive function skills, sometimes, you know, they’re in their twenties and they don’t have the basics. And that’s, that’s what I, that’s why I started going backwards, right? I’m work with high school students. I work with middle school students to try to help them with these skills.

Because even if a school has a study skills class, for example, or a transitions class or something like that. They’re, they’re gonna give them great information, but they’re, it’s not gonna be tailored to what they need. Um, which is part of what I see with my clients, my young clients especially, is that if they don’t wanna do something, they’re not gonna do it.

If it’s boring to them, they don’t wanna do it. So like, we have to figure out a way to make it interesting enough that they’ll want to actually do it. And we do that through a lot of, you know, coming up with small rewards that they like and making. Sure that they have something to get their brain going like we call this dopamine hacking that we have them get a little bit of feeling of accomplishment before they even start something where they’re not going to start.

Um, so I, I think that is. One of the benefits of having an executive function coach is you can have someone sit down with you and say, like, this is where you want to be. And I asked them this at the beginning of our sessions, you know, how do you feel now? And how do you want to feel at the end of this? Um, and then what do we do to get there?

And sometimes it’s really simple little shifts. Um, some people feel like they have to do like overhaul everything, right? And I always suggest to start with one thing, because if you can get one small thing, And you feel some accomplishment from it, then you’ll be more willing to change other things. So.

Well, and I, and I love that now we have, I think the coaching system is more ready now where 10 years ago that wasn’t a thing yet. And so now parents and young adults who are in need of getting some direction and wanting some help, they don’t have to go to the school and ask and be told, well, we don’t do that here. There are other, excuse me, there are other options out there. And so having some, someone like you who, whether it’s virtual or in person, they, they can come and get that information that they need and to start working on those skills.

I’m just thinking how many kids at this, at the age where my son was really starting to struggle. If we had had someone like you working with him. From maybe fifth grade on, where would it be today? How much, I mean, he’s, he’s doing well. He, he has to work really hard to get the grades that he gets, but would he have to work as hard now if he could have started developing some of those skills? So, um, so parents listening, it’s worth looking at this type of information and to see what’s out there for you.

It is. Yeah. And I was surprised, but I shouldn’t have been when elementary school parents started contacting me. Um, because they’re seeing the same things already happening.

They’re already seeing the deficits in elementary school and they’re concerned that they’ll just multiply and they will. So, I’ve started expanding my services to, you know, to help elementary school families as well.

I think it’s great. The, um, you know, executive functioning skills can lag even when a child that doesn’t have ADHD.

Totally, they lag in all of us.

Is there anyone who’s perfect? Maybe there was one that’s in each class.

Well, this is why I don’t love the term neurotypical, right? Because it assumes that people that maybe don’t have a diagnosis or somehow have it all together. Um, and, and it often is people that. You know, have done really well in school that all of a sudden realized they don’t have that they have these deficits.

And then you have people that are just, their motivation is really lacking, but generally the motivation is lacking because they don’t have a structure that works for them to get them going.

Transitioning from high school to college is a, is a gap there. But once they get into college, now those supports that they had through their IEP team, um, mom’s not there anymore. If they’ve gone away, if they’re in community college, they may still be living at home.

But parents, you’re no longer going into the classroom with them. You’re not even going to the school to meet with disability support with them unless you’ve been invited to come in. So now your child’s out there and they have to do it on their own. They’re 18, they’re an adult. What do you have to tell these students and their parents about this transition?

How can they get ready for that independent part after having so much support through all those years?

I love that because, you know, I love to assume that parents and, um, high schoolers have a great relationship. Cause that’s what I, that’s what I look forward to with my kid. And it’s really important to have that warm, open communication when they’re at home.

Um, to ask questions like, I’m curious, and I noticed that instead of, you know, how can you possibly not have your homework done? How? Like, um, cause it is frustrating, right? But first of all, that gives you the warm communication, but it also puts a puts more of the onus on them. Right. So when they get to college, I see a couple things happen, particularly with students with ADHD and other neurodiverse students.

Some of them like to think they’re starting over. And they will not tell the professors that they have accommodations. Some of them won’t go to the learning support office and get their official letter because they’re like, I’m in college now. I’m in, I’m 18 or I’m 25 or however old they are. And somehow they think they’ve grown out of it.

You don’t grow out of it. Um, so I always tell my students, smart students, ask for help. Successful students ask for help. Please give me your letters because then I can help you. Um, so that, that’s my number one thing, because you’d be surprised how many of them halfway through this semester will tell me, well, everything’s late because of ADHD.

And I, well, I said, well, What, why am I just now hearing about this? So it’s really important that from the beginning, you’re having that communication with your professors. And if you’ve gone through the proper channels, then they’re legally required just like they are in high school to provide those accommodations.

It’s also important to advocate for yourself. I’ll give you an example of this. One of my students who gave me the letter and, you know, has, you know, been really good, but good about communicating. One of the things that we determined was occasionally I’ll have them do kind of, uh, at the end of the class, I’ll have them write for 10 minutes, kind of a reflection on what we’ve talked about.

And that was really stressful to him because there was a time limit and, you know, he has extra time on assessments and whatnot. And so, I told him he doesn’t have to do that. Like he, we can just talk about it at the end of class. And, um, So a few weeks later, remember also that your professors have way more students than they did in high school often.

Right. Uh, for me, I’ve got over a hundred students. So anyway, during this class, um, I, you know, I told all the students to do it and then I kind of got onto him. I was like, you need to be doing your reflection writing. And he very discreetly raised his hand and asked me to come over. And he said, I just wanted to remind you, he said, I didn’t have to do this.

And then, you know, we could talk about it. And I said, oh, you know what? You are right. Um, so that was a really good way of handling it. Um, because he didn’t draw attention to himself. I didn’t draw attention to him. We just had a conversation and it was. Something that was easy to deal with. Um, the other thing I’ll say is that with, with social stuff, it’s really important to get plugged in with people who will support you.

And it’s important that you get plugged in somewhere. Um, some people will go off to college and they’ll just, they’ll go to class and they’ll go back to their dorm room or in a community college like mine. They come to class, they leave, they don’t hang out. even if you have a job, even if you have care responsibilities, you need to be connecting with other people.

And there’s ways to do that that don’t take up your whole day. You know, I, I never assume that a college student doesn’t have to work or doesn’t have other responsibilities. Right. Um, but there are ways to do that. That, I mean, the most popular club at my campus is the anime club. Um, and not everyone can come to every meeting, but they are all really excited about anime and they.

connect on that level, right? So, there’s something for everyone. And the reason that’s so important with, um, for neurodivergent students is because part of executive function is emotional regulation and it is social skills. So, and I’ve got a free infographic that y’all can grab. Um, we’ll put it in the show notes, but it’s, um, I call it the four S’s of the skills you need for college.

And it’s about executive function, really. But one of those is on there is that social skills. And so if you’re not practicing those, Then they’re not going to grow. And if you’re not connected with other people, then you’re not going to have positive stimuli. Um, you know, find people that you can study with and actually study, not like your books are in the corner, but you’re playing video games.

Um, so that’s really important to get, to get plugged in, um, and to get the support that you need. And I would also say that, you know, my campus does a really good job about, you know, having workshops about time management and whatnot. Um, There’s TA’s. There’s all kinds of support services, and it can be very overwhelming to even learn what those are.

But there’s generally peer tutoring that’s included with your tuition, things like that. I have a student assistant who is great. Um, when students are afraid to talk to me, they’ll talk to her. Um, so find the support networks on campus. Um, Because again, successful students ask for help and smart students ask for help.

And the reality is that people with executive function deficits, whether neurodiverse or not, need extra help. And the jump from high school to college is big. And it doesn’t matter how old they are, because I have a, I have a wide range of student ages, right? Yeah. You know, from 15 up to, I think my oldest student is in her 60s right now.

Somehow a lot of them still think that deadlines are a suggestion. They are not. They are not. Um, so things like that, you have to be aware of how the expectations affect you. Um, whether that’s consequences and grades, or it’s going to affect your relationship with the professor, which then affects your future opportunities, et cetera.

So that is one part of executive function is the emotional regulation of, you know, knowing I have to reach out. I have to say no to this thing so I can study, et cetera.

I know with both of my kids, um, they’ve been in college for a few years now, so they’ve kind of worked all this out and they both started in high school.

You’re talking about having a 15-year-old, their junior and senior year in North Carolina, they’re able to go tuition-free to the community college. So both of them took advantage of those classes as well. So they, um, while they were home, we were able to walk them through the transition to disability services at the college while they were still minors, so we were able to kind of go with them, help them see how you have those conversations to begin with. But we didn’t go with them to talk to their teachers because we told them even at that age, they have to do this. And so we would help them write the letters. To, to get the email to ask for the meeting and all, um, but now they do that on their own.

They’re able to do that. And, um, some every now and then I’ll get, uh, a message from one of them asking, can you, can you read this for me to see if it sounds right? And, um, because they, they don’t want to, to push too hard, but they also want to make sure that they’re communicating what they need to for their disability support, but, um, but it, so your kids are going to mature as, as they’re doing this.

And in fact, my son and I just had a conversation today, you know, college is going to end one day and you’re going to be working in the workforce. You’re still going to have a supervisor, someone that has to be aware of your accommodation needs with a disability and you don’t want it to be. And this is what he was saying.

You know, I don’t want to be a weak link. I don’t want to be the one who is “disabled.” I want to be a contributing member of the team. And that’s what they’re learning during that college time is how do they do this in an appropriate way and still be part of the contributing factor to their team, whatever it is that they’re doing.

And um, so these are great, um, points that you’re making for parents to hear today for their kids to know as they’re going there. And I don’t know, we, I think we do have some high school kids who are listening to. So, they’re going to be able to get the benefit of this as well.

Well, I’m going to, I’m looking at our time and, um, I could keep talking on this subject forever, but, um, but I do want to get to our advice statements. And so I, uh, like I’ve done with our other guests this season, I have three open-ended statements that I’m going to ask Lauran to finish for us.

And she’s agreed to do this with us. So, are you ready for your advice time?

I’m ready.

So, the first one is the most important piece of advice I would give to a student with ADHD transitioning to college is…

The most important piece of advice I would give to a student with ADHD transitioning to college is to find a system of organization that works for you because you’re going to be asked to adapt and do a bunch of things and you’re going to get overwhelmed with the amount of things and you need to have a system that works for you that you will actually keep up with.

All right. So, number two, college success for a student with ADHD requires a strong support system. One key member of that team should be…

College success for a student with ADHD requires a strong support system. And one key member of that team should be your counselor from Ability Services, because they can help you determine the accommodations that you need, make sure that the letter of accommodation gets to the professor, et cetera.

Then it’s up to you to make sure, you know, that. that you’re getting what you need in the classroom, but that learning support counselor is going to be really, really significant.

And the last one as an educator and a parent, I believe the key to helping students with ADHD thrive is…

As an educator and a parent, I believe the key to helping students with ADHD thrive is affirming the way their brain works.

And I’ll explain that a little bit because sometimes we, we try to almost some of the support that I see for ADHD is like, well, how, how to get your child to not do this and how to get your child to whatever. And I would really prefer to approach it from the standpoint of, you know what? Your brain is amazing.

And this is how I start with my, my coaching clients. Tell me something you love about your brain. And then now let’s work with that. Now let’s, let’s help your time management, et cetera. So, celebrate their brain. That is something that I think that we all need, but particularly for students who are told their brain is part of their problem. Let’s celebrate it instead.

Reminds me of when my kids were, were growing up, you know, we would always have the IEP and would always be focused on the deficits of what they needed to work on. And so, to counter that, I would start the year by writing each of their teachers. And it was a letter of celebrating all of their strengths that they had because I wanted them to walk into the classroom and to see them as a positive who just needed a little bit of support. And, um, and so, so yeah, we’ve, we’ve always as a family focused on where, where are your superpowers and it’s, um, and a fast brain is a superpower because you can think really fast and react very quickly to, to put out whatever the problem is and the creative thinking that can come with an ADHD brain.

I love seeing that. So, great advice. Thank you for sharing all three of those with us. Now, um, before I get into what you’re doing, um, you mentioned the infographic that you have. So, tell us again what that is, and we’re going to put the link in the show notes, but if you want to tell what the link is, that’s, that’s fine as well.

Sure. You can go to my website, alteringcourse.com. And if you go to the freebies section, I’ve got an infographic called College Prep Essential Skills, and I break down into what I call the Four S’s of College Prep. And they’re the executive function skills that I think you really need to focus on in high school. You know, to help you transition into college. So grab that. Um, I’d love to hear what you think about it.

Thank you for sharing that with us. Cause I think, I think that that fits in really well with what we’re talking about, but I think a lot of parents will, will enjoy seeing that. Now tell us more about what you do, how we can get in touch with you.

Who, who you can work with, like, is it just locally or around the world where all of the details.

All right. So, alteringcourse.com, my website is the best place to go. You can find my socials there. I’m pretty active on Instagram. I have some other freebies that you can access, but I work with children and parents of all ages. Um, I say parents because I’ve had parents approach me after I’ve worked with their kids and say, well, can you help me with my time management? Can you? And the answer is yes. So, um, that is something that I like to do. My favorite way of working is to work with middle school or high school, um, students and their parents. So, sometimes for high school students, I prefer to work with them 1 on 1 or in a group setting with the students.

And then I work with the parents afterwards to kind of follow up on everything we talked about. Middle school and elementary families I like to work with parents and kids at the same time. And then college students, I’ll work with them on their own. And then if their parents would like to come in, that’s up to the student.

Um, but, and then again, I also work with adults, but I do have a group program that I really enjoy. And I think that is a great place to practice so many of these skills because it’s more of a social setting. And it’s something that they can see, oh, wait, someone else is struggling with the same thing I am.

And they’re here because they also want to improve because a lot of students can recognize, well, no one in my class is turning things in on time, but no one’s doing anything about it. So, like, let’s do something about it. So, I work virtually. Um, if you are in the Houston area, um, or. Kind of surrounding, then I can, I do in person workshops.

I also travel for workshops though, if you want to have me into your school or community group, but most of my one-to-one coaching and group coaching is virtual. So, I have students from all over and I taught in England for a long time. So, I love working with students from London as. Well, I taught in London. I love working with students from England, but from all over the world, really. So, there aren’t a lot of limits.

Sounds like it. And, and I like that because our audience is pretty widespread. So, anyone listening has an option of calling you and, and checking in with you. So, thank you for that. Well, Lauran, thank you for, for sharing this with me.

I’ve enjoyed the conversation. I always love talking about my kids, of course, you know, but, but also just learning more and you’re bringing more up to date information than, than what I’ve been able to share just because my experiences from when the kids were younger, so, um, so for bringing that in and just taking the time to share with us today.

Awesome. Thank you so much for having me, Tonya.

The post Episode #100: College Success for Students With ADHD appeared first on Water Prairie.