Water Prairie Chronicles Podcast

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This interview dives into the world of financial planning for children with disabilities. Jim, a financial advisor, shares key strategies to secure their future. He emphasizes the importance of government benefits like SSI and SSDI, along with estate planning and Roth IRA conversions.

Throughout the conversation, Jim highlights a crucial mindset shift – it’s all about the child’s well-being, ensuring they have the resources for a fulfilling life. He warns against inaction, emphasizing that there are resources available to navigate this process.

The interview concludes with a discussion about Jim’s book and summit. While their contact information won’t be directly mentioned in the video, listeners who want to learn more can find them through these channels after reviewing the interview.

This video is a valuable resource for parents and caregivers of children with disabilities, offering practical steps and a reminder to prioritize their child’s future financial security.

Get Jim’s book for FREE! https://disabledchildplanning.com/

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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/

James Lange is a CPA/Attorney and the author of ten financial books that help IRA and retirement plan owners. The Wall Street Journal has endorsed Jim’s tax and estate planning strategies 36 times.

Jim’s daughter, Erica, has a disability. Jim’s Roth IRA conversion and SECURE Act expertise was critical in developing a solution for his daughter, and then extrapolating his solution for the benefit of all parents of a child with a disability. Jim authored a new book, Retire Secure for Parents of a Child with a Disability, with two experts in the disability field. The financial planning solutions Jim developed and is sharing with other parents of a child with a disability in this book came from his own family’s journey to devise a long-term financial security solution for Erica.

Full Transcript of Interview:

Tonya: Jim, welcome to Water Prairie.

Jim: Well, thank you so much for having me, Tonya.

You and I have talked a little bit via email and through, through some, some of your team about the topic that we’re going to talk about. And I’ve been looking forward to this one. My husband’s been excited about it as well. We’re looking forward to being able to share your information with, with our audience to start out. Let’s, let’s go back a little bit. I’d like to hear kind of what led you to looking for ways to help special needs parents provide for their children’s future.

Well, it’s interesting. You know, a lot of people become involved in situations related to some type of problem with their child. So my background is I’m a CPA and a state attorney. I’ve been doing this for 35 years. I have nine best-selling books. I’ve been in the Wall Street Journal 36 times. And my real area of expertise is I’m planning for people who have IRAs, Roth IRA conversions.

estate planning, the Secure Act, and then more recently, providing for a child with a disability, and when I had to come up with a solution for my own daughter, which my wife and I did, and the difference is The difference between her running out of money and having $1.9 million in today’s dollars. I wanted to just tell the world about it. I wanted to say, hey, hey, community of parents with a child with a disability. There is a way. That can enormously alleviate your worry and your anxiety because you’re not only going to have to provide or hopefully provide for your child during your lifetime, but then after you’re gone, you know, my daughter might survive me by 40 years.

How do we provide for her for 40 years after I’m gone and working longer, spending less and saving more just doesn’t do it. So I have this, what I think is wonderful information. I was able to. Recruit two wonderful coauthors and we wrote a book called Retire Secure for Parents with a Child with a Disability and and then we’re doing a summit on it and right now it’s my life goal to get this information out to as many people as possible.

As could use it as possible. We’re making the book available for free. We’re picking the summit available for free. And if people go to a website, you know, they can again, get this all for free. Uh, this is, this is me and my daughter and. My wife,

just a note, listeners, we’re going to talk more in detail about the book and about the summit, um, near the end. So stay with us to the end of this, but go ahead and look in the show notes in the description and you’ll see the links there as well. So make a note of that and remember to come back and click on those links.

And thank you for doing that, Tonya.

Oh, sure, sure. The, you know, our whole idea is we’re trying to serve as much, as many people as we can by providing as much information as we can.

And the majority of our listeners are parents with children with different disabilities and special needs. So this is valuable information for all of them to listen to. And, um, But I, I kind of want to get into what, so, so we know how you got started. This is a personal passion for you. Um, as it is for a lot of us, as, as you say, can you tell us what steps you followed to ensure that your daughter would be provided for?

Sure. So there’s three basic steps that I think apply to just about everybody who has a child with a disability, who wants to dramatically improve. The prospects for that child, both while you’re alive and after you’re gone. And let me start by saying, if you have a child with a disability and your goal is to provide for them for your lifetime and their lifetime, unless you’re spectacularly rich, You have a long, tough job ahead of you.

So you want to maximize every single thing that you can. You want to squeeze the last dollar out of the tax code. You want to get every government benefit that you can. Um, so just keep that in mind. And the difference, you know, a lot of times when I’m working with, you know, Let’s say a client that doesn’t have, that nobody in the family has a disability, and let’s say with superb planning, maybe we save, uh, an extra $500,000, and if we kind of screw it up, instead of getting an extra $500,000, the family gets nothing, or they even owe money.

And, Is that a terrible thing? Sure it is. Is it tragic if it’s done and two able-bodied adults don’t get as much as they could have? It’s bad, but it’s not tragic. But what if you have a child with a disability? And the difference between you doing it right and you doing it wrong is $500,000. And it’s not all that hard to find $500,000, depending on how much money you are, that is tragic because a little bit of money goes a long way, um, for a child with a disability, if you’re starting at zero. Now, there are many, many things are very expensive and we’re going to talk about government benefits, but we want to squeeze every single dollar, every single benefit that we can for the benefit of our child. And most of the work that I and the coauthors do is basically in one form or another, get money from whether it’s the Social Security Administration, whether it’s the, you know, the IRS or the federal government to, let’s say, transfer, usually gradually on a monthly basis or even annually, transfer money from the government resources to our child’s resources.

And that’s really the key. So there’s no magical investment. There’s no magical life insurance policy. Um, this is basically, let’s call it government program and tax reduction. I believe can make a huge difference for so many people. I’ll tell you the other immediate benefits of getting this work done after all three steps, and we’ve experienced it personally.

Cindy and I were really anxious. Oh my God, what are we going to do? Are kids going to run out of money? They’re going to be a ward of the state. They’re not going to be able to have any other resources. They’re not going to be able to have any luxuries. They’re not going to be able to see an out-of-town, out-of-network doctor.

They’re not going to be able to get the alternative drug that the, uh, that the, uh, insurance company isn’t covering, blah, blah, blah, blah, blah. And it weighed on us heavily. And then what happens afterwards? So this was. Anxiety for us. And then when I found out our daughter is very bright, she was very anxious about her own financial future.

And then when I, when I explained to her, you know, what we were doing and how we were, how she was going to be okay, the anxiety level for both us and her went way down and frankly, all of us have some physical issues, her more profound than, than ours, but anxiety exacerbates many of these symptoms. And for us, the reduction in anxiety did what you would expect, you know, better sleep, better feeling, blah, blah, blah. But for her, it made a dramatic difference in her health. So I think that that is achievable by getting these things done. So it’s, it’s not just a matter of, Oh, okay. 30 years after we’re gone, there’s going to be money instead of no money.

No, this is a, this is an immediate measurable benefit. Let’s do the three steps because they’re, they’re mission critical. And ideally, they’re done in this order, although you might be able to combine step two and three. Number one, mission critical. Can your child qualify for either SSI or SSDI? Now SSI is essentially a poverty program.

So your child can’t have money. And maybe that there’s some planning involved so that your plan, so that your child doesn’t have money when they make the application. And by the way, the Social Security Administration, they will take into consideration the parents resources. So if the parents have any type of estate or any type of income, there’s a very good chance you’re going to be over the limit and you’re not going to be able to qualify until that child turns 18.

So once the child turns 18, then the Social Security Administration looks at that child’s resources and not the parents, and that’s typically When, um, well, on behalf of the child, but the child, um, applies for SSI and without getting into the details, the other possibility is called SSDI, um, which is Social Security Disability Insurance, and that is, um, Um, it is preferable if you can qualify for that, but you need to have a work record.

Uh, either the child has to have a work record or the parents have to have a work record. And if we’re using the parent’s work record, the parents have to be of retirement age. So for example, our daughter is collecting SSDI because, um, my wife, um, then applied for Social Security for herself. And then.

SSDI based on my wife’s Earnings record, but, uh, and this isn’t my area of expertise. This is Debra McFadden’s area of expertise and she calls getting qualified for SSI or SSDI the golden ticket. Uh, and if you like, I’ll tell you some of the benefits. Of the golden ticket.

Sure. Sure. Cause I know a lot of our parents that are listening will end up filing.

First, first there’s a monthly benefit and I should know exactly how much it is. And I think it varies depending on number of things, but let’s just call it roughly. 800, 900 a month, and I would say that’s just the beginning of the benefits. The other benefit is if you qualify for SSI or SSDI, you’re going to automatically qualify for other benefits.

Um, it might be insurance. It might be, um, Medicare. Which is, our daughter is qualifying under state insurance and Medicare, which is huge, more than the 900 a month cash. Um, it could potentially qualify you for equipment, uh, for specialized computers, specialized walking aids, specialized wheelchairs, um, all types of things that frankly can be very expensive and getting this qualification is mission critical for people who will, uh, who do qualify. And, you know, there’s a whole art and there’s a whole strategy of getting, uh, children qualified. Now, sometimes, uh, the, the disability is not so severe. Uh, that the government will say, yes, you qualify.

Uh, in fact, the vast majority of the applications, uh, probably many of whom deserve to be qualified are routinely rejected. And um, so to oversimplify and Debbie would hate if she heard me say this, if your child can work, there’s a good chance that are not going to be able to qualify if they can’t work.

Then there’s a good chance that they will. Um, and I’m sure that she would not like that characterization, but I guess my point, I mean, we’ve had, we’ve had adult children with down syndrome that bag groceries at the grocery store, not qualify because they can work, but that’s maybe an extreme rejection.

It’s the government doesn’t hand over money easily. Um, which is one of the reasons why if you are going for this designation, you really want to get this application. Dot your I’s, cross your T’s. There’s a whole bunch of strategies. I’ll give you a couple of them and then I’ll refer you to the book. So we as parents, we naturally want to tell people what our child can do.

In fact, very frankly, before this call, you were starting to tell me about your child and your children and you were, you, you didn’t say, well, they can’t do this. They can’t do that. You said they can do this and they can do that. And that’s natural. That’s what we, as parents want to do. But when you’re qualifying for SSI and SSDI, we want to go a hundred percent in the opposite direction.

We want to make our kids look as bad as possible. Um, we want to just make it so that boy, they can, you know, they’re, they, they have a really, really tough time just doing the most basic things like getting dressed or doing anything. So here’s the example that, that Debbie McFadden. Yeah, so Debbie is the parent of two Paralympic champions, uh, Tatiana, who is a racer, wheelchair racer, and, um, uh, Hannah, who is a, an above-the-knee amputee.

And she is a world-class Paralympic rock climber. All right. So this, this woman is an athlete. Okay. You have to be really good to be in that rig. And there’s very little doubt in my mind that if you timed her going up a flight of steps and you time me or you, or even most people that she’s going to get up there faster on one leg.

Okay. But. When it came time to apply for benefits, did Debbie tell the people, Oh, by the way, my daughter, she’s like an Olympic champion. She can get up steps really quickly, faster than you or I could. No. She said, my daughter can’t go up steps the way other people can go up steps. She only has one leg that is functional.

Okay, so this is tough. This is tough. That’s not what a parent wants to say, but that’s one of the strategies, and there’s a lot of other strategies. You want it, and you want to have to paint this picture. Hey, this kid has problems. He or she will likely never be able to work, and, um, You know, there’s, there’s discussions in the book about, you know, letters from doctors again, and you can’t just say, ask the doctor, Hey, can you write this letter?

You have to tell the doctor more or less what needs to be in the letter and caregivers and teachers, and it’s, it’s a big deal, but over time, it can be worth hundreds of thousands of dollars, maybe a million dollars. To the child over their lifetime. So you really want to get this right. So I’m going to and if you have any questions on it, that’s great.

But I’ll just sum up and say step one is get your kid qualified for SSI or SSDI. And more information is available in the book. More information will be available at our free virtual summit.

Excellent. That’s, that’s very powerful. Just that information alone. And we’ve talked about some of this in past episodes, um, and especially the part about making sure that your child’s income level is low enough by the time they turn 18. Um, parents listening. This is also including, and correct me if I’m wrong, if you have a 529 plan for your child.

Interestingly, you brought up 529 plans. I was gonna talk about that later. Actually, I wasn’t gonna talk about 529 plans. I was gonna talk about something called the ABLE Plan.

I was gonna ask, I was gonna bring that up as well ’cause we, we did an episode on that .

And, and, and frankly, if, if your audience is familiar with a 529 plan. where you essentially make an after-tax contribution to a fund that grows income tax-free, assuming that at some point the appropriate beneficiary, usually your kid but not necessarily, takes that money out for qualifying educational uses, that the money and the growth comes out tax-free.

And sometimes what happens is people put money in a 529 plan before they realize the extent of their child’s disability. Maybe the child will never go to college. The money’s there. There is actually a mechanism of transferring money from that 529 to an ABLE account. ABLE is wonderful. It’s just kind of like a 529 plan, right?

Every new thing tastes like chicken, right? It’s, it’s very much like a 529 plan. You put after-tax dollars in, the money grows tax-free. When the money comes out where the child is using that money for a qualifying use, not only does the money come out tax-free, but the growth comes out tax-free. And the other wonderful thing about the ABLE Act is it can be used for some things that a typical special needs trust, and we’ll get into that later, cannot be used for.

So it is a good way to supplement. The child’s income and still maintain government benefits. So it’s a great thing.

So, but the dollar amounts are still limited on that, correct?

That’s, that’s the problem that it is not, it’s not a game changer. It’s a good thing. But it’s not the difference between your kid running out of money and your kid being fine.

It’s just one more arrow in your quiver or mixing that up. But anyway, it’s, it’s just one one strategy that isn’t mission critical. We’ll get to the ones that are, but it’s a good thing. And why not?

Right. And like I said, we’ve, we’ve mentioned these before. We haven’t gone into deep dives on them, but we have tried to at least help provide that as a resource of information for our parents that are listening, especially when their children are young.

Because, as you say, a lot of times you don’t know, my children were both at birth, given money to go into their college accounts. So before they were walking this earth, they, they had money in their account and that money was to grow to get them ready for college. But, you know, as we talked to other parents, if the children are not going to go to college one day, they may need to think differently as far as when they start using those funds.

And maybe they do go to college, but they want money for others and they get a scholarship and maybe they want money for other things. Should I go on to step two?

Yeah, let’s, let’s go ahead. Cause I want to kind of run through all three of these before we go into the other questions that I have.

All right. So step two, uh, easier said than done is get your state planning right. This is, this is also mission-critical. So I would tell any couple with a child, you should get your wills done. And let’s, let’s forget about the money for the moment. All right. If something should happen to you and your spouse or the co-parent of your child.

Who’s going to raise that child? Well, I want the person to raise that child to be the person that you want to raise the child. Not the person that some judge in his or her estimation should be the person who raises the child. Maybe it’s your mother. Maybe it’s your brother. Maybe it’s a friend. Maybe it is a community that you’re involved with.

I don’t know. But here’s what I would think. You’re better off making that choice and doing it now. And by the way, if, if you know, so I was talking to somebody yesterday and she has a 75 year old mom and she says, you know, boy, my son is young. I, you know, my mom, isn’t going to survive to take care of him long enough.

Wait, Grandma lives with the son. She knows the son’s issues better than anybody. Name her, and then maybe come up with a successor, or even have her come up with a successor. Don’t let that be an excuse to put this off. You want to get your wills and your trust done right. So I just told you some of the non-financial part, as well as power of attorney and healthcare power of attorney, which is also mission critical.

Now let’s go to the money. Money. Let’s assume for discussion’s sake that your child, um, either now or even potentially later on qualifies for SSI or SSDI. In that case, and particularly with SSI, you lose your qualification for SSI if you have money. Well, gee, Jim, why don’t we just leave the money to our kid in a trust?

Okay, so let’s say that you do a standard minor’s trust or even a trust that will last the life of the child. And let’s say it’s a more or less, let’s call it a standard creditor’s trust. The IRS will look right through that trust. They will treat that money as if it’s the kid’s. They will cut off the kid’s benefit and maybe even try to get some money out of that trust for money that they have already paid.

So that would be a total disaster. So even if you have wills and have a standard trust, boom, you can lose that money and even have to pay money back. And that would be a horrendous thing. Remember, we’re trying to provide for this child for the rest of their life. No, you want something that is called a special needs trust.

And I won’t go into all the nitty gritty on that, but basically the trust is designed in a way that the social security administration and the IRS cannot go through that trust and treat it as if it is the kid’s money. So that money is protected for the benefit of the child. Now there are a bunch of restrictions on that, on the, you, what you’re allowed to do with that money, and I’ll be more specific, what the trustee is allowed to use that money for, for the benefit.

of the child. But the key is, is you want to get that trust. You want to get it right. If the underlying asset is an IRA or a 401k, there’s four additional things that you have to worry about. But if you do this all right, then you’re going to have a trust that can, you can leave an IRA to, you can leave a Roth IRA to, you can leave after-tax dollars to, you can leave your house to, and if, if the, T’s are crossed and the I’s are dotted and the child still maintains their SSI or SSDI status at your death.

That trust will be in place and the benefits will be protected. All right, so that, that is mission critical. Now I’m going to go to the advanced portion. All right, a lot of people, including us at one time, don’t really know how their kid is going to do Many years from now. So let’s say you’re in your forties or fifties or sixties, even, even seventies, you have an adult child and you hope that he’s going to be here.

She’s going to be able to get a job and be okay. You hope the best for your child, but you fear the worst. Well, and you, and you certainly don’t feel good about leaving the money outright to the child. So you have two choices. One, you can do, let’s call it the standard, uh, Predator protection trust. That the, that the trustee can use for the child with relatively liberal terms.

It protects them from, from the child himself from doing something stupid. It protects if the child ever gets married and the future ex sues them. It protects against other creditors, um, or maybe a hospital stay where it turns out there’s a $300,000 balance and well, gee, you know, I’m sorry. My money’s in a trust. So. It does. It does that.

All right. But the standard trust doesn’t protect government benefits. So, okay, well, we’ll do a government benefit, you know, type trust the special needs trust. Well, that’s going to be, let’s say that your child ends up not needing SSI not qualifying. And now we have this money in a very restrictive trust.

That isn’t the ideal place for the money. Okay. So, and, and let’s just say at the time of drafting, we’re not sure if our child is going to qualify for SSI or SSDI or whether they’re not. So here’s the advanced idea for this. It’s called a toggle trust, and it doesn’t work this way mechanically, but let’s just talk about it conceptually.

Think of two different trusts. One is, let’s call it the standard creditor’s protection trust that is pretty favorable for the child If they’re not getting a government benefit, the other one is, let’s call it this special needs trust, um, which is less favorable if the child doesn’t need or isn’t getting the benefit, but it’s very favorable if the child does need to benefit because it will protect the money in the trust and you basically let the trustee toggle Well, I need a creditor’s protection trust and you don’t make that decision now, but you make it after your, and maybe your spouse’s death.

And that way the trustee is going to know more than you do now. Cause right now, maybe your kids on SSI or SSDI, maybe they will fall off it. Maybe they’re not on it, but later they will qualify. So this just adds flexibility to the estate plan, and I am a big fan of adding flexibility to the estate plan.

I should tell you this is not a solicitation for legal services. I don’t have a law firm anymore. I sold it. But I still have this information, and I think it’s great information. I wanted to share it with your listeners. All right. So that’s, that’s the second thing is you want to get the estate plan right, the guardianship provisions, the powers of attorney, and the, let’s say, potentially the toggle, or if it’s clear, you know, a special needs or a protective trust.

So before we go on, I have a question about the toggle trust. So the trustee is the one that is. is deciding which way that’s going as, as time’s passing.

That’s correct. Which is typically, typically that decision will be made relatively shortly after the parent’s death.

Okay. So, so it’s, it’s happened at the point that it’s being implemented. It’s not five years from now they’re going to switch it the other way. They just have the decision at that time. It’s either going to go towards standard or special needs. Okay. Okay.

And, and I, again, I think that this is, I think it’s mission-critical to get this right.

Yeah. I had not heard of that before. So that’s, that’s an interesting…

Problem is hardly anybody’s heard of this before, including the estate attorneys.

So, listeners, now you know what to ask.

I’m creating a headache for you guys because some very good estate attorneys that work in this area have never heard of a title trust.

At least now our listeners know to ask for this.

Yeah, and then, and then I don’t know what to do, you know, when, when the attorney says, what? What’s a toggle trust? Um, but here, here’s what I would say. So, so I, I, I was a practicing estate attorney for 35 years. And I have my own ideas on what I think is the best estate plan. The other thing that I’ll tell you is when I review these plans, which is part of our work, when we do a master plan, I’m, I’m happy with maybe one out of 10 of the set of documents I see.

I almost always see major changes that I want to implement. All right. So that is what’s a, one of the problems. Uh, the other problem is, If somebody came to me and they said, well, I talked to Joe Schmo or I read this book and I’m interested in this provision in my will or in my trust, I tried to keep an open mind.

Hey, maybe I’ll learn something nine times out of 10 I liked my way of doing it better. Your state attorney might say, Hey, no, let’s just pick one or the other. And if we pick wrong, Okay. You know, we’ll just change it before you die. You’ll have to come in again. So, you know, and I don’t know, maybe somebody has a better argument against it than I do.

Um, but anyway, I will tell you that that’s going to be a practical problem. But what I would prefer is the attorney says, Oh, this sounds like an interesting idea. Maybe I can read up on it. And since I probably want you to go to a specialist anyway. Since I’m likely to see many more of these types of special needs or traditional with the toggle possibility, I want to get this thing right.

So then when the next person comes in, I can, you know, I can help that person. So I’m kind of getting, that’s kind of the advanced portion, but even just getting the basics right is absolutely mission critical.

Well, I can, I think I can speak for most of our listeners, especially as parents have had to learn how to advocate for their children.

So we’re giving them an assignment now to advocate for themselves whenever they go in. They know how to ask questions. They know how to try to help research. So I think we’re giving them some tools now that they can. Can take whenever they do have these, these meetings.

Well, I think that that’s what you, you and I are about Tonya. We are trying to give tools to a population that needs them more than most any other population.

Well, this is why I was so excited about this, this conversation, because I knew we’re going to be getting some.

It’s not all that hard to save a couple hundred thousand dollars. Uh, no, we haven’t got into my real area of expertise cause the first two are not. Should we go to the third part?

Yeah, let’s, let’s go into the third one. I want to, I want to hear this one now.

All right. So this is, this is really my area of expertise. So for the last, I did the first article. Peer review article. Um, and I wrote it 1997 even before Roth IRA conversions came into law in 1998.

And when they, even before it became law, I realized, wow, this thing is going to be unbelievable tax free growth for the rest of your life, the rest of your kid’s life, the rest of your grandkid’s life. And you know, when we’re number crunchers, so we said, okay, here’s if you don’t do any conversion. And your kid is going to be here.

Here’s if you convert this much for so many years, and I’m showing the end result. And here’s going to be where your kid is if you do the highest conversion. So we would run numbers. And determine, you know, using relatively conservative assumptions, where your kid will be, you know, not five years, 10 years, which is, let’s say, a relatively normal outlook, but 30 years, 40 years, even well after you’re gone.

So, in our daughter’s example, getting her qualified for SSI, forget about government benefits. All right. And getting the estate planning, right. She’s going to be better off by $1.9 million in today’s dollars because we proactively took these three steps. You know, that is, we got her qualified for SSDI, or we can SSI is similar for estate planning.

We got the estate plan right, and we got the Roth IRA conversions right, which started way back in 1998. And then I’ve done strategic Roth, 401k contributions, additional conversions, but we got the Roth right. And at the risk of being a little technical, back before 2020, if you died with an IRA or Roth IRA, and you left it to a non-spouse beneficiary, that non spouse beneficiary could stretch or defer.

Those distributions that many of us who are older than I’m not older than 73, um, yet, um, but you, those of us, those of you who are, you have a minimum required distribution, just like your kid will have a minimum required distribution after you’re gone. Well, in the old days, pre-2020, your kid got to stretch or defer those distributions of either an inherited Roth or an inherited traditional IRA over their life.

Then in 2020, government said, no, we’re sorry. We know that we said you could have the beneficiaries, beneficiaries stretched over their life, but we’re too greedy. We want the tax sooner. So now we’re only going to give your kid 10 years. And by the way. Even on a million-dollar bequest, that’s, that’s all.

If you count the interest over many years, that’s like a million-dollar difference. But guess what? They made an exception. If you’re an eligible designated beneficiary, which to oversimplify, means if you either qualify for SSI or SSDI and you maintain that qualification, the government is going to allow you, as you the beneficiary or the trust as the beneficiary for the benefit of the child, to stretch or defer those distributions over their entire life.

So. The, the difference in is very odd, even if you only have a $500,000 IRA, let’s say you have that a little bit more and not a heck of a lot else, your kid can be better off by $239,000 if you get the planning for the Roth IRA right. And by the way, you’re going to be better off too. So this isn’t, you know, this isn’t one of those where, you know, you, you eat rice and beans so your kid can be rich.

No, this is. This is not at your expense. In fact, towards the end of your life, you’ll actually have more money and more purchasing power if you get the Roth right, but, and a lot of people certainly have heard of Roth IRAs. And there’s a lot of advisors that Roth IRA analysis is part of what they do. And all the literature, at least that I’ve looked at, I don’t see the combination and the synergy of Roth IRA conversions and planning for a child with a disability. Now, are there a lot of other things that are related, like after tax dollars in a Roth, uh, converting, uh, uh, an inherited 401k to a Roth after death, um, separating the coffee from the cream, which in effect is to some extent a free Roth IRA conversion for your after-tax dollars, um, and then there’s a whole bunch of other, related strategies.

I’m just trying to give the big picture, but I’ll just say that there is often hundreds of thousands of dollars of getting this right. And even though the other two are absolutely mission-critical, and if you could only do two and only three, not three, then I would say, cut me and my Roth out, get the SSI and SSDI and the estate planning in. But anyway, mission-critical. Number one, SSI, SSDI. Number two, the estate planning right with the wills and the trusts and the beneficiary designation of the retirement plan and the special needs trust.

And number three is the tax planning right with Roth IRAs, ABLE, and then let’s say some of the subtle nuances in the tax law that frankly, I’ve been doing much of this for the last 25 years, that’s how long Roth conversions have been around. Huge opportunity. When I meet new, new people, new prospects, I hardly see anybody in the disability community who has got the Roth right.

And so I want to clarify, um, what you’re saying here to make sure, because if I’m following it, then our listeners are following it. And if I’m lost, our listeners may still be following it, but, but, but we’ll see here.

This isn’t easy stuff. It really isn’t.

My parents age, I know they’ve kind of had to make that payout time when things changed. So that was in 2020 that that changed.

Uh, that’s correct.

The required distribution started at that point, right?

In 2020, the big change was the rules for the beneficiary. So let’s say for discussion’s sake that your parent died on December 31, 2019 and left you the beneficiary of a million dollar IRA.

All right, you would be able to stretch that million-dollar IRA over your entire life. Let’s say your parents died on January 1, 2020. You would have to take all that IRA. Remember, nobody’s paid tax on it. So you’re gonna have to take that whole million dollars. You’re gonna have to come up with income tax payment on that million dollars of taxable income.

Okay. So this was an absolutely miserable, miserable, miserable rule, but thank goodness they put in the exception of the one surviving spouse and two people who qualify, well, they use the word eligible designated beneficiary. And then there was also a recent ruling that the IRS would take.

The designation that the Social Security Administration gives you, where before you had to prove it separately, but now if you qualify for SSI or SSDI, then the IRS will honor that, um, designation and let you stretch that inherited IRA over their lifetime. Right.

So today that’s still the case.

Yes. Ten years for everybody else. Uh, over the lifetime for a child with a disability.

All right. So they, so, so they do need to have that SSI, SSDI in place as soon as possible.

Yes.

If they are going to be a beneficiary of…

And I will tell you, it is a bear to do, that is a lot of detail work. I’m not asking you to do anything that’s easy, but I’ll also tell you this, the odds of that getting done right, if it’s not you.are not great, or at least go down dramatically. Uh, frankly, I could never have done what my wife did. You know, she had so much patience. She dealt with so many doctors and school teachers and other people that Erica had contact with. And it was one heck of a job. Um, and nobody’s going to do that better for you than you.

And to think that you’re going to try to get that done after you die, that somebody else is going to do that, uh, not likely.

Wow. So this is great information. So I do have some other questions as we’re moving forward here.

Okay. Could I just pick up on one point that you brought up? There’s some very cool planning that grandparents can do.

All right. So, Tonya, if you were, if you’re, if your child did qualify for SSI and SSDI, let’s do the simple case. There’s some very cool planning that your parents can do in their will, in their trust, Um, that should not be ignored. And we can also use a concept called disclaimer where you’re let’s just keep it simple and say you’re the only child they leave everything to you.

They give you the right to either keep it or disclaim it. But if you disclaim it, it could go either into a creditor protection trust, the special needs trust or even the toggle. So there’s things that grandparents can do too.

Okay. So can they, can they leave it in a toggle trust for the child?

Yes, they can. The thing is most, even if they’re a grandparent, even if their grandchild has a disability, most grandparents are still going to want to take care of their kid first. Now, maybe you’re so stinking rich from the royalties from this, um, this, uh, podcast that you don’t need any money because I know you make a lot of money on this stuff.

Tons. We, we almost cover a portion of one of our recording sessions.

You almost cover, by the way, I have found that very typical and I love, I love being part of this community because We, I have found this community to be so given and so open and everybody’s trying to help everybody and we’re kind of like we’re, we’re all in this together.

And I felt that in different groups in the past and it’s just, it’s just a wonderful feeling, but anyway, notwithstanding your parents would probably rather give it to you and then let you worry about it. But let’s just say for discussion sake that there, I’m just going to make up a number there. Let’s assume that, uh, your kids qualify for SSI.

All right. They leave you a million dollars in an IRA. You’re going to have to take it out and pay taxes on it at your very high rate because of all the royalties you earned in 10 years. Let’s say that you had sufficient money that you didn’t need it. You could disclaim it. And then, if, if it works the way I want, then it goes into a trust where your kids, unlike you, can stretch that inherited IRA over their lifetime. So, meaning it’s, if we look at you and your kids as one economic unit, there’s a lot of tax savings to be made. By having the money go to the kids instead of you.

All right. So I want to just, just repeat this, this last little, little bit that we talked about. So, because some of our parents may be in the situation where their parents or the grandparent of the child is leaving or they’re, they’re putting the parents line in as the beneficiary.

So if nothing else changes, that parent has 10 years and they have to pay the tax upfront on that whenever, whenever they, they take it out, however, they can disclaim it and pass that on to their child. And if the child is already set up with the SSI SSDI, then they have their lifetime to use those funds as needed.

And if the beneficiary that let’s, let’s go back to your family, your mom and dad are preparing their will. Let’s keep it simple. Let’s forget about siblings. They’re going to start by leaving everything to you, not in trust. Cause you’re a big girl and they, they know that you’re mature and responsible and everything else.

All right. They leave it to you, but in, but in, in their documents. Both in their will, their trust, the beneficiary designation of their IRA. I wanna have something in there that says, I give Tony the right to disclaim any share. And by the way, you can disclaim the IRA, part of the IRA, the house, whatever they’re gonna leave you, you, they give you the right to disclaim.

And what you just, you can’t say, I disclaim. It goes here, I disclaim, it goes there. All you can do is say, I disclaim and it goes next in line. Who’s next in line? Oh, the special needs trust for my child that’s already drafted. Maybe even with the toggle. And by the way, what I would do is don’t necessarily take my word for it. That’s one of the reasons why we wrote this 450 page book. Um, it’s one of the reasons why we’re having this, this summit. Uh, you can read about it and see if you like the idea.

Right. And, and, and listeners make sure that, that you click on that link and see, see, see what’s happening with the summit. If you’re listening to this later and the summit is over, the, the book is there. A lot of that information will be there as well.

So I’m not going to have this wonderful summit that’s gonna have me, it’s gonna have Debbie McFadden, the SSI and SSDI person. It’s gonna have, uh, joy Steiner, the, you know, the wonderful estate attorney who writes. beautifully. She speaks beautifully. We’re not gonna have all this and then say, Oh, too bad you missed it.

You’re gonna have to wait a couple months before you get any benefit. No, no, we’re I don’t think we’re gonna have the whole thing up at once, but we’re gonna have some resources because what we find is that some people Learn best by reading. Some people learn best by viewing and most people learn even better by doing both. So we’re going to try to make that available.

Great. So, so listening, if you’re listening six months from now, click on the link and see what he, by then he may have all of it up anyway.

If people have a specific issue, the best source of information, particularly for readers is the book. Look at that table of contents.

Read about what you’re interested in. You know, then after the first thing, then you can go to other things, but that’s the key. That table of contents. It’s very, very specific. There’s a very good chance that there’s one or two issues that you have thought about that you’re looking for additional guidance on that will that will be in the book.

And then. Maybe after you do that and you get some confidence. Hey, this was some great information. You know, I didn’t know this. I didn’t know that. Then you can, you know, start looking more at the table of contents. Well, gee, what is the best estate plan? How does this special needs trust work? What’s a toggle?

Can I have some information on the toggle, et cetera, et cetera.

Before, before we finish here, um, I have some open-ended statements that I’d like to ask you so we can pass on some advice this way, and then I’m going to have you, um, give us just one, one more blurb about the, the summit too, before, before we close.

Okay, sure.

So listeners, if you’ve been following this season, you know, we’ve been doing some, um, different advice by starting a statement and then my guest is finishing it. So Jim has agreed to play along this episode. So the first one that I have for you, Jim, is the biggest fear I had about my child’s financial future was…

The biggest fear that I had about my child’s financial future is how’s my child going to have enough money to to comfortably live after my wife and I are gone.

Okay, so next statement. I wish every parent of a special needs child knew that…

I wish every child, every parent of a child with a, with special needs knew about, if they don’t already, qualifying for SSI and SSDI, and if their child has any type of reasonable chance to do everything in their power to make sure that that child qualifies. I want that child qualified for SSI and SSDI, typically after the child turns 18.

All right, last one, for parents feeling overwhelmed by financial planning, I would recommend…

For parents who are feeling overwhelmed, take some time. And I know that you’re busy. I know that you’re overwhelmed. I know that this is difficult. Take some time. Go through the process. Finish the process. Get it done. Then go think about something else. Don’t, don’t just, if you do nothing, you’re going to be in the same position two years from now.

You’re going to have the same anxiety, but you’ll have had two additional years of anxiety that could have, to a large extent, been alleviated had you done this. And believe me, I get it. You know, just the day-to-day, and particularly if your child is living with you, is just so difficult. It’s emotionally wrenching, uh, for many.

It’s physically demanding, um, you know, a lot of times, you know, our, our kids are not perfect patients, and they do things that test our patience. But you want to get this planning done. You want to make sure that you’re qualified for SSI/SSDI. You want to get that estate planning done and you want to get the Roth and all the financial part optimized because it’s going to make a big difference.

You’re going to feel a lot better. And are you going to do it all tomorrow? No, but not two years from now. You know, think about three to six months. You’re going to try to at least get this started. Um, and again, whether you use yourself, CPAs, estate attorneys, financial advisors, uh, people even in the community that offer this service. Um, you want to get this done. You’ll feel better. I promise you.

The summit and the book are at DisabledChildPlanning.com.

In fact, if you, if you sign up for the summit, you automatically get the book. If you’re seeing this after the summit, that is after June 18th, I’m not sure what will be up there, but presumably we’ll still have generous offers. I know everybody’s arguing with me that I shouldn’t give the book away for free, partly because people won’t think it’s that good. Well, I, the re, the other authors, a whole bunch of the reviewers, including Burton Malkiel, uh, they, they think it’s the best book there is on the subject.

So, you want to get the book, uh, DisabledChildPlanning.com/freestuff. If it’s before June 18th, you want to sign up for the summit. The summit, we’re going to have the three authors, uh, we’re going to have a whole bunch of other speakers.

Well, Jim, I appreciate you spending some time with me today, going through so much information here.

I, I’ve learned a lot. A lot of this I knew, but I’ve learned even more. So I’m hoping that our listeners are staying with us. They can go back and listen to this repeatedly and, and get all of their notes together from the first part. And I’m hoping that you’ll see a lot of them at the summit too.

The post Episode #99: Secure Their Future: Financial Planning for Special Needs Kids appeared first on Water Prairie.

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Would you say your child hates writing? They’re not alone! Many children struggle with writing, and it can be frustrating for both them and their parents. This interview offers a fresh perspective, focusing on the underlying reasons behind a child’s writing woes and how to address them.

Forget forcing endless writing drills. Instead, the key is to develop the foundational skills that make writing easier. These skills include sensory processing and gross motor skills. Think jumping on a trampoline, building an obstacle course, or even playing with Play-Doh – all these activities can help your child develop the physical control and sensory awareness needed for writing success.

The interview also explores alternative writing methods for children who dislike traditional pen-and-paper tasks. Dictation software, standing desks, and even exercise balls can all be helpful tools.

If you suspect sensory processing issues are contributing to your child’s writing struggles, occupational therapists can offer valuable support. There are also online resources available to help you learn more about sensory processing and how it impacts writing.

Here’s what you can take away:

By understanding the reasons behind your child’s writing struggles and focusing on building the necessary skills, you can help them develop a more positive relationship with writing.

Connect with Munira:

Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

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/

Munira Adenwalla is a Paediatric Occupational Therapist of 25+ years and a home educating mum to a 12 year old. She specializes in sensory processing and thinking outside the box to support parents and their neurodivergent kids to move, learn, and play through fun.

Munira is a strong advocate that parents know their child best. She created the Foundations for Writing program, which uses the No Writing Way(TM) to help writing.

Munira also loves travel, food, and cat sitting with her son.

Full Transcript of Interview:

Tonya: Today’s topic is a game changer for parents of children who struggle with writing. Many kids with writing difficulties are actually given more writing practice, which can feel overwhelming and counterproductive. But what if there was a different approach? Enter Munira Adinwalla, a pediatric occupational therapist with over 25 years of experience.

Munira created the revolutionary Foundations for Writing program, which uses the no writing way to help kids develop the essential skills they need to write with confidence. We’re going to dive deep into Munira’s program, explore the connection between sensory processing and writing, and discover how play can unlock a child’s potential for writing.

So buckle up parents, because this episode is packed with practical tips and valuable insights. Munira, welcome to Water Prairie.

Munira: Thank you. It’s nice to be here.

So we’re talking today about a topic that I wish I had been able to talk to someone like you about when my son was very young. I can remember the years and the things that I used to try to help ease writing with him, but you created the Foundations for Writing program.

And it uses the no writing way, which really was intriguing to me because I want to find out more about this. And it’s, and you’re using that to help teach or develop writing skills. Can you tell me about what the no writing way is and help our listeners understand that too?

Yeah. So I, um, I, so I call it a no writing way because writing difficulties are usually, we can use that I say, Uh, theory to describe it.

Writing is the tip of the iceberg, and it’s really a reflection of other underlying difficulties that kids have, and the reason, um, what happens usually is people look at the tip of the iceberg, and they look at the writing, and they think, okay, let’s look at the child’s pencil gross. And, and, and fix the way that they hold their pencil.

Let’s put a pencil grip on their pencil and, um, they’ll just hold it right. And then they’ll write, or let’s tell them, um, to hold their pencil this, this way and, or they’ll do lots of writing practice or kids are sometimes put into like a, uh, like a fine motor group to improve the fine motor skills, but it’s not necessarily about any of those skills.

And we need to look deeper to develop. to meet kids at where they’re at and develop those underlying skills, because if those skills are in place, then kids are going to be more comfortable in their body and their hands, hands to write. And there’s a lot of kids who have like writing trauma, um, from being told to write, or sometimes people don’t believe kids that they have these difficulties, because, well, they don’t.

They don’t have these difficulties and it’s not meant in a bad way. So sometimes it’s hard to relate if most people find these things okay to do. And, um, so that they sometimes don’t realize that yes, a child really does have sore hands when they’re writing, or yes, their hands do have sore hands. And yes, this is difficult for them.

Um, and so sometimes we hear comments of, um, like, uh, Oh, they’re just being lazy. Oh, they’re just not trying hard enough. Um, or, or, Oh, they’re not interested. So that’s why they’re not doing it. And it goes along with that, um, saying by Russell. Green and I feel like he’s going to go like down in history with this, say his kids do well when they can, because it’s one of the best, um, um, statements out there really.

And it’s the same for this is that kids do, do they do well when they can. And if they’re not, not, it’s because something is hard about it for them. And we kind of need to listen to them and dive deep and figure out the root cause of these difficulties. And, uh, so that’s why I called it a no writing way because when I want to kind of raise awareness and help and prevent kids from going through that, that trauma and for kids to enjoy the creation because of writing, because it’s not necessarily just the mechanical aspect of writing, writing is so much more than that.

It’s also that creativity of it and having fun with it is really important. So, um, yeah, that’s, that’s, why I called it this no writing way. And also people weren’t believing me when I said we’re going to use like, we’re not going to do any writing to help your child writing. They’re like, Oh, really? No, like facing or like writing practice.

I’m like, no, we’re not doing any, any of that. We’re going to really figure out the root cause and start from there. To develop the underlying skills, and then when they’re ready, they, it will, when you know you can do it, you’re more likely to do it. And it’s not a cognitive knowing, it’s just you feel that you’re able to, in your body and your hands, you’re more ready and then you’ll do it.

And that’s when they’re also going to be more ready to do more writing work, if that’s the route that you want to go down.

So like, what is it, what does it look like when you’re working with a child? Cause, cause a lot of parents are going to be very familiar with you saying, you know, we’re going to do writing drills. We’re going to, to practice this page writing a 20 times, you know, before you go to the next one.

Yeah.

So you’re talking about not doing that. So what does it really look like instead?

Yeah. So I’m talking about, um, kind of looking at two different ways of helping, helping kids. One is we can look at a top down approach, which is where you look at strategies to help the child. If they’re going to school, for instance, um, you might look at strategies to help them in, in school.

in the now to be able to dealing with, um, keeping up with what you’re doing at school and finding other ways for them to write, but without writing maybe. So it might be having like a scribe or it might be doing typing or it might be doing text to speech or it might be like putting like scrabble pieces together to make up words or so finding just other ways that you can Do, do the work, but where’s at, where children are at, if that makes sense.

Um, and so those are what I call a top down strategies to help you do what you do, do that, do the work and be with your peers and do what you enjoy. And then I look at bottom up strategies, which doesn’t look anything like writing practice. And so when we work at bottom up, we go all the way to the most underlying skills. And. Are you familiar with the pyramid of learning?

It has been so long. I know I’ve heard of it before, but I cannot remember much. So, so remind me.

Yeah. I’m going to give you my abridged version of it. Okay. So, um, so the pyramid model, um, pyramid model of learning, it’s, by, um, Taylor and Trott, and I think it’s 1991, just, just for, for reference.

Um, and it’s, it’s this, uh, pyramid model, and it shows what the most underlying skills are that come before, like, reading, writing, and, and learning. And the first level starts with sensory processing skills. And so, for me, that looks at things like, um, how, it’s how you process, um, sensory information and make sense of information from your senses.

But it’s not just your taste, touch, smell, sight, and hearing. It’s also your, um, sense of your muscles and joints, which is what we call, uh, proprioception, which is, if, if you like words, the word probe means own, like O W N, so it’s like your own body. So, it’s a sense of your own body. body. Um, so that’s one of the centers we look at.

And then we look at your sense of movement, which tells you where your body is and your sense of balance and your sense of center. Um, and, um, so we start with sensory processing, which is, so knowing where your body is and your body awareness. And then after that, it looks at skills like core strength. And having stability in your body, in your core.

So you have a strong, steady core and center of center. And then that will help you to move your hands and your fingers. Um, because if you, if you’re not strong here, it’s really hard to hold yourself together or hold yourself upright. And you need to have this. So, I’m going to be doing a really strong kind of steady base here so that you can move your hands and fingers more easily.

So, if you, if you just, this is an exercise I do quite a bit in some of the workshops I do. I have people just kind of really slouch their bodies, and then we kind of lift our hands and wiggle your fingers. And you’ll see, and then we sit up straight and do the same thing and wiggle your fingers. And you just notice which one feels a little bit easier and in which position do you have a bit more wiggle in your fingers.

And so for me, I, I feel more ease off movements and more, more wiggle in my fingers when I’ve got, when I’m sitting more or when I am more upright. And that’s because this is holding you steady so that you can do more and lift your arms. more. So that’s the core strength aspect. So we had, okay, so back to this pyramid model of learning, we have sensory processing, then we have core strength.

And then after that, when you have this steady base, that’s when often children will start developing more fine motor skills. Um, and, uh, so that comes next. So that’s when we start doing like, Um, working on hand, hand, um, strength and hand coordination. So it’s not, it’s almost like, um, it’s not as helpful to work on fine motor skills until you’ve got all the other bits in place first.

And after fine motor skills comes eye hand coordination or visual motor skills. And then after that comes, um, Things like, uh, learning skills, I call it, like reading and, and writing and concentrating and focusing and problem solving and planning and sequencing and all those other more kind of, um, learning related skills.

So that’s what it looks like when I use a no writing wave, I start all the way at the bottom with a sensory processing first. Then we develop, develop core, core stability, and then we do fine motor and eye hand coordination activities. But I, I do it in kind of, in, in that order or that, that sequence, uh, starting with the whole body first.

It’s really interesting. Now, last year I had a guest on, um, Kristen Jaslowich, and she talked about the, the eight senses. So you’ve referred to those same, same ones again. So listeners, I’ll put a link here for you if you want to go back and hear that, but finish listening to this one first, and then you can go back and, and, and dig, dig deeper into the senses that she’s talking about.

Um, I found it really interesting. I had never really thought about those being called senses, but you’re right. You, you go beyond just using the, the five that, that, that, that you learn about in kindergarten, but there is more.

Yeah. And those are your, um, external body senses. Um, those taste, touch, smell, sight, and hearing.

And then your internal body senses would be this proprioception, which is knowing where your body is in space. And then your vestibular sense and your interoception is, which is, um, Being able to feel things inside of you, like feeling your emotions when you feel calm or when your emotions are boiling up, or if you’re feeling hungry or sleepy, and if you have to go to the loo or, um, have or go pee or something like that.

Um, so those are all like in internal senses and, uh, it’s, those are the, we forget about, uh, but inside. That, that vestibular sense is really big for, uh, reading and writing as well because your vestibular sense, sense, um, so this is a sensory system in, in your body and when it, in the brain, it’s within, it’s within the ears, so it sends connections to your eyes, to your, and to your ears, so it has a knock on effect on things like, uh, concentration and, and can help support auditory processing, um, and also movements of the eyes as well. So, uh, they kind of interplay together. So this is how when you use a no writing way, you start with sensory processing. It might look like you’re just doing like crawling and climbing and obstacle courses and like tug of war or pushing, pulling games or like, uh, any kind of movement and jumping and crashing and things like that.

It might look like you’re just playing, but you’re actually working on those foundational skills. and developing that awareness in, in the body to feel, feel where you are and, uh, starting with the whole body. And once you, your whole body is more activated, then you can, um, get more isolated control of your hands and your fingers.

It says, as you’re sharing all of this, I’m thinking back to, now my kids are 21 and 23 now, but I’m thinking back to those early years for them. So Emily’s my, my first, when she was three years old, she was beginning to read. She understood. The letters and the sounds and started putting things together just on her own and came to me one day and was just asking me, does this say this, does this say that?

So by four, she was reading the, the, the early book series for children and, and could read them to us by sight, but she also started writing at that point. And by, before she was five, she was writing short paragraphs and stories on her own. Now that’s early for a child to do, but Emily’s also visually impaired.

So for her, and this is looking at her, this is how it seemed to me at the time. She was developing those fine motor skills early because that was easy for her. It was close by. She could see it. She could, she could grasp it, but she didn’t run or jump and hop as early. She was more, um, We had to work more with OT with her for those larger gross motor skills to develop them.

And so it was kind of flip flop for her. And I think a lot of it was because of the visual impairment that she was working through at the time and a lot of sensory issues going on too. My son, almost two years behind her, developed all the gross motor skills early, but then when we got into school, we realized that he did have a writing disability.

And even now it’s still painful for him to hold a pencil. And he went through those years of teachers making him use the pencil grip and practice. They tear up his paper and make him start over again, you know, all those things. And I knew that wasn’t right either. So at home, I would. I, I, I’ve shared this before in our kitchen, we have a porch that’s been finished on the other side of the kitchen and there’s a sliding glass door there.

So it doesn’t go outside. It just goes into another room. So I took, um, white sheets of butcher paper and taped it on the other side of the, of it and gave him a dry erase marker. And when he was in elementary school, I would have him write his homework. on this huge glass door because I knew his gross motor skills were easy for him.

It was the fine motor skills. So he could hold it however he wanted to. And he could write his letters, however, but he would get all of his words done and I would take a picture of it and send it to his teacher. I figured the worst case is they would say no. So intuitively, I think I did help him with that, but we were still kind of uncovering what the root cause was at that time.

And I think, um, I was just going to say, it’s amazing how parents do know intuitively how to support their kids often. And that’s what you, you did it sounds like, um, with, with your son. Um, and I, I often say that I think parents do have a deep gut instinct of what to do with their, their kids. And in my work I kind of put words to it and science to it. And that helps you one, um, know that yes, I’m doing the right thing. And two, it, it just gives you the, the terminology and the, the science and a way to kind of encourage you to do it more and to advocate with, with that information.

But I, I love how you knew what to do. And I was just thinking, it sounds like you, you had kids that had different opposite needs.

They were totally opposite. Yeah.

Yeah. Yeah. And I’ve, um I was just saying for, it’s that, that processing, whereas some kids, um, are, uh, they have, um, They are under responsive to sensory input, where they need lots of that sensory input and whole body movement.

And then there’s some kids who are more responsive to it, so they might be more sensitive to that whole body movement. And it sounds like that’s what you, you maybe saw. I’m guessing, uh, with kids, uh, yeah.

So, so my, my daughter was the one who one therapy session was just taking her down a sliding board and having her scream every single time until the therapist could finally get her just to calm down enough to go down a slide.

So, so she was working on totally different sensory issues. She had a full sensory diet in preschool. So, so the kids were very different than that. And it’s part of why we wanted to start the podcast because having two children that were so different with different, different situations altogether, we learned a lot as parents about how to ask questions.

How to find help. And we, we were just stumbling along like, like most of our listeners are. You just, you don’t know, cause no child comes with a handbook and when they have special needs, you even need another handbook that doesn’t, doesn’t exist yet. And so we’re hoping through having these different conversations that parents who are listening can start learning and start knowing how to ask questions and, and when to say, you know, yeah, I’m doing a good job.

I need to keep doing this. And, um, so it’s nice what you’re sharing, but what I was thinking when you were, when you were talking earlier. We were talking about the senses and about how the, the auditory signals are triggering how the visuals triggering our children who have, who are deaf and hard of hearing or our children who are visually impaired.

How does that factor into the skills that we’re talking about? Does, do they, do they compensate in a different way or does it just take longer for them to start learning these skills?

Yeah, I think it depends on, on, on the visual impairment. So, uh, for instance, nowadays, there’s, um, cortical visual impairment, for instance, that’s, that’s one that you see quite a lot in, in, in children.

And you’ll often find that sometimes the kids might be sensitive to, um, this vision and visual information because their, their vision is fluctuating quite, quite a lot. But at the same time, I, I feel that the vision is like the first, um, um, sense of, uh, first area and that’s kind of having a knock on effect on other areas because they’re, they might be sensitive to sound as well.

And I know for me, if I take my glasses off, I cannot hear people as well. Um, and I, if I want to really listen to what you’re saying, I, I put my glasses on first thing in the morning and then I take them off right before I go to bed. So if I, I cannot, Yeah, as well without my glasses and it’s that visual and all these systems, they really impact affect each other and what work together for you to make sense of your wealth.

And then also the vision system, it can affect your movement system as well. And your sense of balance and feeling steady and secure. So often kids with a visual impairment, you will find they’re also sensitive to movement, but it’s understandably so if what you’re seeing around you is kind of moving around or not, not looking as a steady for you.

So that must affect your balance. And I think that’s why sometimes you might see some, some of these children needing to have things kind of close than within proximity. And that’s why they’re not reaching their body out further. Away because, uh, it’s then they have to shift their vision and their visual field. So it makes movement a lot harder in that sense. So I think all of these senses really impact on, on each other and, um, maybe a bit differently for different, different people.

So you talked earlier about how the sensory processing. Is connected with the writing disabilities for some of our students if they haven’t really established those skills yet beyond writing, can working on the sensory processing skills, can they address other areas of development for the children to.

So this is a really great question. So I have this, uh, program where I help help parents help their kids develop these underlying skills. And some of the other things we see best that comes before, before the, um, being more interested in choosing and wanting to write is that the kids will be more stronger in their body.

Um, parents say often that their child is like swimming more or they’re climbing more, or all of a sudden they’ve scaled up the rock and along with. This, uh, increased strength in their body also comes more, more confidence. And, uh, and some, some parents have said, for instance, their child is more comfortable being outside with other people.

And I think it’s that once they can feel where their own body is, they can sense where their body is, where other people’s body is and where they are related to other people in, um, things around them. So they’re making sense of, like, space around them. And then, uh, some, uh, often you’ll also see more, more balance to do things and more, um, so being able to, uh, like ride bikes or scooters and do other, other physical activities.

And for some kids, it’s they feel more grounded and, um, like, uh, karma in, in their body to be doing things while being more still as well, because kids who need a lot of sensory feedback it’s hard for them to sit still. So that’s one of the things you often hear. Oh, my child won’t even sit still to write.

Um, and those are your kids who are, who need a lot of sensory feedback to their body. To, to drive them and, uh, without it, it’s hard for them, uh, to, to do things or kids who often sometimes I’ll say sometimes that kids love Lego and are really good at Lego, but it’s difficult for them to hold the pencil to write.

And it’s that, that Lego gives that resistive sensory feedback to your muscles and your joints. So you can. Yeah. Feel your hands and fingers more. So yeah, so sometimes these are some of the skills you’ll see on the way, or kids or parents will say their child got dressed, um, and put their clothes on or put their socks on, or started to use cutlery.

Um, and so these are some of the skills that many skills come before, before writing. And, uh, uh, it’s, yeah, it’s kind of, my favorite one is to hear about the confidence, that kids have more confidence.

I never thought about it too, that, you know, a child whose core strength is weak, they’re going to get tired of sitting and trying to hold themselves. So now adding to have to balance with if they’re leaning on the table to have to now lift a hand and right. Yeah. There’s a lot that factors into that. And how squirmy do we get if we sit at a dinner party too long and we want to get up and walk around? Yeah.

Yeah. And I’m, I’m standing as we speak right now and I cannot sit for long either. I actually get a backache when I sit for too, too long. And I sat for me standing and I can kind of move my body a little bit at the same time, uh, helps me. As well. And I almost think it would, wouldn’t it be nice for schools to have like standing places in their schools as well. It’d be nice to have little, uh, like standing section for the kids that want to stand and then move.

It could just be an okay thing or like a normal thing to just go from sitting to standing and regulate yourself when you need that. I think we’d have a lot more difficulties, um, then,

or at least have a spot in the back of the room where they could move to if they needed to stand and come back to their seat or something.

Yeah. Yeah. Something like that. Um, or like using clipboards and stuff to be standing and walking around, uh, and, um, they say that sitting is like one of the, um, I think I’ve read somewhere that it’s like smoking almost. It’s like the next kind of, it’s just so, so, um, makes it really difficult, uh, to be sitting for so long and we shouldn’t be sitting that, that long.

Um, and even for like, um, I read some about, uh, um, I think it was Bowen therapy or something like that, where they talk about. Getting up, up and off the floor. So getting on the floor and up and off the floor and really working your body to being able to do that. And when kids are sitting in chairs, like for most of the day at, at school and recess and break time is all made a little bit shorter and not as often, or there’s not as much playground stuff.

on playgrounds now. So kids are really being made to sit a lot. And I’ve actually, I feel like kids are really a lot more stiffer in their bodies now as, as well. And you see a lot more stiffness, like in their lower back and in their hamstrings and in their legs. And it’s probably because they’re sitting in this position where their legs are kind of shortened by sitting in the chair like that versus when you’re standing and your legs and your muscles are longer and aligned. So it’s uh, uh, yeah, I feel like sitting is a big detriment. Um,

I’m thinking back to my son, his third grade year was when his writing was really starting to, to show that it was falling behind his peers. And that was the year he was diagnosed with dysgraphia.

He had a teacher who would rip up his paper, tell him in front of the class that, that he spelled things wrong and to start over again. And then because he wouldn’t finish it at the same time as his peers, he would have to sit on the sidewalk and P. E. and not get to go out to recess. So he didn’t even get his exercise on those days.

And I’m thinking it just made it worse. because now you’re, now he’s never getting to use that, that, that whole body motion. Cause now he’s restricted to a square on the sidewalk.

Yeah. And I think if, if teachers perhaps knew, um, more about these underlying skills and maybe they knew that really recess is what’s going to like fill up the child’s cup.

Again, and if you all them to be able to continue with their day, they maybe wouldn’t be doing this, but they don’t really know. And, um, they’re, uh, sometimes they might think that the child’s just not trying hard enough instead. And that’s kind of a big reason why I do what I am doing is I want, I would love for more people to know that because it’s really, it’s so much writing that that’s the writing trauma.

That you see, and some kids can handle it a bit more than others and, um, but they shouldn’t have to handle it either. Um, so, uh, yeah, that’s, I, I think it’s partly, uh, I think teachers want to do as well as they can, and they are really doing as well as they can with, with what’s available to them. They probably need more support and resources as well.

And. more, um, just more, more knowledge about these things. We should ideally, in an ideal world, world, we’d all be working together, um, often and regularly, isn’t it? And then we’d be able to pull out the best of what we know and put it together kind of. So, um, yeah.

Well and we have, we have educators who listen to the podcast. So, um, so they’re hearing what you’re sharing with them now, which is good, but I’m thinking too, as we’re talking, we’re, we’re talking about building those underlying skills, getting the child strong, and then. After those things are done, then now they’re ready to work on the writing and to get in there.

But this could take some time for a child. So how do you address the concerns of a teacher and a parent both that while we’re working on this with little Johnny, he’s now falling more behind his peers. So should we not be doing writing drills in addition to this? How, how, how are we gonna make sure that he doesn’t get behind more because he’s having to catch up with these other skills?

Yeah, and I, I, I think one by, um, having kids do more of it, it’s not really, they’re not doing it more comfortably with, with their body. They’re still going through pain and, and, um, to, to do it, you know, their, their hands are more sore, their body’s uncomfortable. And when your body is uncomfortable and your hands are sore, your brain can’t really work as well.

Anyways, because it’s, um, not, um, you have to have a comfortable body and feel safe to, to be able to learn. Right. So that’s, that’s, I think having these, that’s when we need accommodations in place to, to help kids and find another way that there’s always another way to do, do, do some of these, these things.

They’re finding another way of doing it. So if it’s, even if it’s like they need to have the worksheet in front of them all printed out and having, um, whatever the material is in, and you just circle what you need to do, um, or put a sticker on it or, um, or, or you do a fill in the blank or have like a partner to do most of the writing, who is like your daughter, we need someone like your daughter to be the partner, you know?

And that’s quite nice. So you’re highlighting like different kids strengths. As, as well, and that you can work together to do things and also having sensory strategies in, interspersed in your day to do things. So having a different way to be, um, learning than sitting. So it could be standing in, in the back, or it, it might be having like, uh, different stations in the room that like movement stations where you can go between and do your learning in different movements.

Um, ways, or it might be that a child who met all the kids probably need some kind of movement break. So doing some kind of movement or a little, um, uh, movement activity with all of the kids. And I think a lot of these things are beneficial for everybody. Not just the one child. And we don’t want to single out kids anyways, because then sometimes kids don’t want to do the strategies because they feel that something is wrong, wrong with them.

And why are they the only ones that have to? And so I, I think part of it’s also really highlighting that these are just differences with the whole, whole classroom, that everyone has differences and different ways of learning and doing and being, and all of these ways are, are okay as well.,

I think this, this is good because I think it’s good for us to understand that it’s like, I think a key part of what you just said is every child is going to benefit from these modifications. So if a classroom has a child who needs to work on these extra skills.

Every child can work on those same skills. And by modifying the environment itself so that you have more activity, more movement around the room, then, and a lot of our younger grades are doing that naturally. Your, your first couple of years of school, when, when I’ve been in the classroom, we would have stations around, you know, where, you know, Yeah.

Every 15 minutes they would all change to something different and one would be a physical type activity, one would be a writing activity, one, you know, one may be a listening activity, but then they’re moving around the room and partnering them together would be an easy way to do it too. I liked when you mentioned using tiles or, you know, having something that they’re moving it together.

So that becomes maybe a puzzle from cut up pieces of, you Of the paper, putting it back together where there, it doesn’t have to be an expensive activity. So no, these, these are, these are great, great, great ideas. You’re, you’re sharing here.

Yeah. And I, um, I’m going to go in another, not a fully full tangent, just a tiny, tiny tangent. But is that also for kids? It could be that just kids knowing that, uh, encouraging kids that they know their bodies that, Oh, it looks, you know, you, you, you need a movement break or you need to move or do it, you know, go do an errand or something. And really just honoring kids and their own bodies. And Johnny needs to do that.

Um, you know, some other kids do this too. And also, um. Uh, so, so really, uh, helping kids to know their own bodies and understand their own bodies. And, um, it’s a way to support their regulation in, in the long run as, as well. And these are all okay. And also for the learning that there are different ways to learn as well, and different kids learn in different ways.

This is how you learn, learn best, then let’s do it this way for you. And so and so can do it, um, a different way. Like they might be fine sitting at the table, you know? Uh, so it could, it could be, uh, I guess they’re big discussions in a way as, as well for, uh, schools and, uh, kids, kids to have, uh, but it’s a way for understanding each other as well.

Well, and what a gift we can give the students in our classes by helping them understand how they learn best. A lot of them aren’t going to know this until they’re much older. But as parents, we see from a young age, how our kids learn, you watch them play with their toys. As an infant, they’re already giving you signals of their best way of learning from those early years, even.

And by the time they’re in preschool and kindergarten, they’re Parents, you’ve had that much time to observe your child and to work with them and play with them. You’re going to know, are they going to sit there and examine it, looking at it first? Are they going to shake it first or are they going to throw it across the room first?

There’s those, those ways of playing or how they’re going to be learning because they’re learning the world early. So if we can, if we can help them put a name to it, it’s even better.

Yeah. I love that. Um, yeah.

Well, I’m going to transition our conversation a little bit here. The, our listeners who’ve been with us for a while, they, they know this already, but I’ve been having during season three of having each of my guests give some advice by finishing an open ended statement.

And Muneera, I’m going to give you three statements that I’m going to read aloud and have you repeat them after me, but then you’re going to finish the statement with whatever you want to finish it with. And there’s no right or wrong answer here. It’s however you want to finish it. Okay. Great. Okay. Yeah.

So, um, so the first one we have, I’m going to talk some more after this, but I wanted to, to make sure that I get this in there. So the first one that I have for you is when a child struggles with writing, the most important thing for parents to remember is.

Okay. So when a child struggles with writing, the most important thing for a parent to remember is that it’s, uh, not about the writing, that the writing is the tip of the iceberg and it’s really about underlying skills and that the child is doing the, I’m sneaking in the second one, I guess, as a child is doing the best that they can with the skills that they have, uh, always.

Nice, nice. I like that. Okay. So second one, instead of forcing writing practice, parents can support their child’s writing development by

Okay. So instead of, sorry, can you say it again?

Yes. Instead of forcing writing practice, parents can support their child’s writing development by

So instead of, uh, forcing writing practice, parents can support their child’s writing by, uh, developing their underlying sensory, uh, and motor skills.

And starting with the whole, whole body. So even before you’re doing writing at home, or if you’re doing writing homework at home, you could have your child doing some like jumping, jumping on the trampoline or doing some little kind of obstacle course or some kind of whole body movement first to prepare the whole body to be ready for, uh, uh, more, more comfortable and ready for writing.

So are you saying that even, even after they’re, they’ve established some of these skills that they need? Um, maybe before doing homework, it would be good to do those activities first and then to sit down.

Yeah. Yeah. So doing like a, a, a, like a five, five minute or 10, 10 minutes of that, but actually homework is quite, I think kids need maybe a bit more time sometimes to unwind after school and get back into, to doing homework because it’s, this is another whole tangent, uh, but because they’re doing so much writing and been working so hard at school already, I almost feel that they shouldn’t be having any writing homework.

By the time they get home, because many of these kids are really exhausted already from having to work so hard at home. They need time to unwind and then also time to kind of preserve their relationship with their family and family not having to force them because it’s so difficult as well. But, um, I think doing some kind of whole body activity before doing, uh, writing work is, is helpful or even having some kind of sensory support or doing it another way, like you were doing writing while standing up.

Uh, or as for some kids that might be sitting on a ball, for instance, uh, um, and, or so for some kids that might be having the parent be scribing for them for their homework.

Right. Right. When you had mentioned earlier to dictation, so parents pull out your smartphone, they can dictate into your notes and then Use, use that.

I, I like that as well. Okay. So I have a third one for you. If a parent suspects their child has sensory processing issues impacting their writing, they should.

Okay. So if a parent suspects their child has sensory processing difficulties that impact their writing, they should, uh, one, uh, you can look for an occupational therapist. to, to help, help you with, um, to, uh, dive deeper into your child’s sensory processing and make, make sense of it. And, or you can look for, um, there’s lots of programs online where you can learn more as well, because I know that there’s some places in the.

Uh, country or world where you may not access an occupational therapist or there’s wait lists. And, uh, but there are, there’s more people working in the online, online space. So that would be my thing is, is that, and then second is you may have to do a bit more advocating for your child and teaching other people about it as well, because they may not understand it.

So you may have to ex, ex, explain more to other people that, uh, work with your child and support your, your child and, um, uh, be, be their voice for them.

All right. That’s, that’s all, all three of those were great advice. I appreciate you sharing those with us. Before we go, I did want you to tell us a little bit more about what you’re doing. Um, some of your coaching and stuff and also how our listeners can contact you.

Yeah, so I have, um, uh, three things. One is I have a, uh, uh, uh, three, uh, uh, helping kids write a Facebook group. And this is where I teach about the, uh, no writing way. And we have a really lovely community of other parents in, in there as well. So it’s a place where parents can know that there are other parents like them.

So you, Um, no, feel that you’re not alone. And it’s a place where you see other kids and you’re like, Oh, that looks like my child. And I haven’t seen someone that looks like my child before. So it’s really nice in that sense to not, um, to have a community like, like that as well. And then I share lots of that information about the no writing way in there.

So that’s my, uh, helping kids write Facebook. And then I have every three months I run a free workshop called Beyond Pencil Grasp. And it’s where we, we dive a lot deeper into the sensory processing piece and how that impacts on, on writing. And we look at how, uh, go through each of the senses in more detail and, uh, how it looks, may look for your, your child and some steps that you can do.

And that leads up to. My, uh, paid program, which is called Foundations for Writing, which is a 10 weeks, uh, parent, uh, group coaching program where I have, uh, video tutorials for each of these levels of, of that pyramid model of learning for, for kids and I have, uh, it’s actually quite fun because I’ve got videos of my son and I doing the activities so parents can see how to do it.

With, with their child as well. So we have video tutorials and video demonstrations of activities and zoom Q and A’s where we get to all chat and hang out together and support each other and a private Facebook group. So that’s my foundation for writing program. Now working on a teacher’s helping kids write toolkit, um, to, uh, to, uh, work together with teachers to.

To be able to look at these underlying skills and have some ideas of what to do. So, uh, that’s, that’s my, um, project. I’m working on a book as well to write so I can write more about, about this and other people can access it wherever, wherever they are. So it’s my way of advocacy, uh, for, for kids.

So contact for you the best way is through the Facebook group?

Yeah, I think so. Yes. Um, I do have a website as well. Um, so I, I do, uh, one to one parent consults as well. So that’s through my website. It’s ot4kids. co. uk.

Okay, great. We will put the links to all of these on the show notes. So if you’re listening on the podcast platforms, you may need to go to the website, but there’ll be a link to the webpage.

There, a lot of them aren’t public. aren’t posting the, all of the notes for me. If you’re watching on YouTube, then look in the description. Um, all the links will be there. And if you’re on the website, it’s already there in front of you. So you’ll be able to see it. So we’ll make sure it makes sure it gets there.

And, um, listeners, if you have any questions about this, contact her directly, send us an email to info at water prairie. com. We’ll get it to her. Um, leave, leave a comment. Leave your questions in the comments. We want to make sure that we’re serving you as best as we can. So, you know, this, this may have brought up some questions that you have that you want to find out more about.

So, so let us know what your questions are. We, we will continue with this and I, we’ve, we’re developing this panel of experts and Muneer has agreed to be on the panel. So. If you have questions related to this, let us know. We’ll, we will send them to her and see if we can, can get a direct answer for you.

Yeah. I’m happy to answer people’s questions afterwards as well, if they have about this topic. So, yeah.

Excellent. So, Manureh, thank you for spending this time and, and sharing all of this with me. I would love to have known you when my kids were younger, cause you, you would have helped me get through a lot of these questions that I had to try to figure out on my own.

So, so thank you. And I know you’re going to help a lot of other parents that are listening here.

Yeah. Thank you so much for having me. It’s been really fun chatting with you.

The post Episode #98: Why Your Child Hates Writing (and How to Help Them Love It!) appeared first on Water Prairie.

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Danielle, a single mom of a special needs child, shares her experiences raising her daughter with epilepsy and auditory processing difficulties. The interview highlights the challenges Danielle faces navigating the healthcare system, advocating for her daughter’s needs at school, and managing the emotional toll.

Danielle describes struggling to find qualified doctors who listen to her concerns and frustration with insurance limitations. She emphasizes the importance of advocating for your child and highlights the need for parents to be their child’s strongest voice.

Despite the challenges, Danielle finds strength through self-care. This includes small breaks like watching a movie or taking an extra hour at the store without her daughter. She also emphasizes the importance of finding a support system, whether through online communities or support groups.

Danielle has transitioned into a career as a life coach, focusing on women facing infertility, miscarriage, and single moms by choice. She offers coaching services to help parents navigate the challenges of raising a child with special needs, including advocating for their child and dealing with guilt.

The interview concludes with Danielle encouraging parents to trust their instincts and fight for their child’s needs. She reminds them they’re not alone and there are resources available to help them on this journey.

Connect with Danielle:

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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/

Danielle is a certified life coach that wear many hats. She enjoys helping those in need as they navigate difficult seasons in life as she brings a nurturing and understanding approach to a variety of situations. She utilizes wealth of knowledge and experience empower clients to navigate the emotional, mental, and physical complexities that they face. When she is not helping people on their journey of healing she is going on adventures with her 6-year-old daughter that has special needs.

Full Transcript of Interview:

Danielle: Yeah, that that’s my hope for so many families that they just have Children that will outgrow it. I’ve been told by one because we’ve had multiple pediatric neurologists, you know, one said oh, she might outgrow it. And then the next one said, no, she’s not going to outgrow this. This is for the rest of her life.

And I’m just like, it’s not what I want to hear. It’s conflicting. And then the other one is just like, oh just stay on this medicine and wait two years and then come back and see me. So, you know, what do you do?

Tonya: So, So wait two years? So there’s no checkups during that time or changes?

No, I’ve had to fight. We moved to another state and just trying to find a pediatric neurologist, which was a journey in itself, end up finding one and very thorough.

We had two hour-long appointments. And, you know, I told him, I’m like, okay, my daughter has this and he’s like, oh, no, that’s not this. And he was just very kind of condescending because I asked him a question. He’s like, oh, is that what you wanted to hear? And I’m like, well as a doctor. That’s not what you say to a parent that is just trying to figure out what to do next.

You know, I’m like, you don’t say, is that what you wanted to hear? It’s kind of, you know, it’s, it’s. It’s upsetting, but at least he was thorough and left very thorough notes. So, you know, end up getting somewhere, my daughter being on the medication and then he ended up retiring and then not really taking my calls.

As my daughter had a medical emergency recently and we were in the emergency room and I’m like, this is kind of life threatening. It’s, you know, safety or risk concerns. And his office wouldn’t call me back. So then end up finding a new pediatric neurologist, but in this I have to call their office six to eight times just to get through.

So like when you schedule an appointment, it just sends you to a voicemail and no one calls back. And so I’m just at this kind of point of frustration. We don’t have a, I don’t have a lot of options, you know, my area, there’s really no pediatric neurologist. So the new person is good. And, you know, determining that the medicine my daughter was on for a couple of months, she was having adverse effects.

They’re causing hallucinations and, you know, and in that. Do the hallucinations not only now have a pediatric neurology, a pediatric neurologist, a child psychiatrist that wanted to put her on antipsychotics. And I’m like, she’s six years old. I’m not putting my six year old on antipsychotics and yet still trying to figure out what’s reality and what’s not reality, you know, and trying to tell her, okay, when you hear this, when you see this, this isn’t real.

And this is what we can do trying to figure out how to tell the school. Because if you say, Hey, my daughter sees this. Um, they kind of look at you, of course, but having to figure that out. And then her being six and just trying to make sense of it. And of course it’s scary for her. It’s scary for me because when it happened, it was like midnight when we had her first episode and rushed her to the emergency room and they said, we don’t really know what to do.

And then they’re like, Oh, we’ll just Google, um, you know, the specialist. And I’m like, that doesn’t help me at three in the morning. And so I’m just trying to figure out what do I want to do moving forward in the midst of all of it? So that’s me in a nutshell.

A lot of our families that are listening are facing that same, that same series of questions.

You know, you, you’re starting out trying to find who is the doctor. And in your case, you’ve had to, to find multiple doctors. Unfortunately, that’s that. And that’s such a specialty area. There aren’t going to be a lot of choices in each, each region as well. But then even when you find the doctor, what questions do you need to be asking?

You know, the, the medicine is one question, but then the side effects from the medicine, and I’m with you adding more medicine to medicine because of the medicine for a six year old, especially that’s just, that’s a lot. Are there dietary changes that could be there that, that might do what the medicine’s doing?

I don’t, I don’t know these answers. I’m not, those that are listening. I’m not telling you what to do. This is just, I’m just asking questions because these are what the questions are that we keep asking and having to find out, you know, how can we go? Um, I would say if you’re listening and you’re a parent of an older child and you have any advice for us, leave it in the comments, send us an email.

We will pass this on for others to be able to see as well. The stage that you’re in, you’re, you’re still seeking. But we have parents that are going to be younger than you that will be able to benefit from this conversation too, to know that, all right, so if I have to change doctors, it’s okay. That’s something I didn’t know.

I don’t know about you, but I thought that, you know, you have a doctor, you have to stay with that doctor. I had to learn that it was okay to question them and to, I guess you call it fire them and go on to another doctor. If you’re not, if you’re not connecting right, or if you don’t feel like it’s the right care for your child.

Exactly. And as you mentioned to having to sometimes pay out of pocket. So my daughter has insurance, but the insurance has been really difficult. They’re referring her to. For when they’re referring her to like specialists that don’t see children. So it doesn’t help me when you give me a referral and this is my third time and you’re not, not helping me, you know?

So in that now I’m going to do, I’m doing things out of pocket. So knowing like, I know that my daughter has trouble with auditory processing. No one seems to really understand or believe me, but it’s just comprehending things. I know the medicine already impacts her memory. So I know that, but it’s just kind of comprehending things, you know, dealing with like I said dyscalculia with numbers, um, just spelling. I said, let’s spell moon. And she says, M L L N there is no L in moon, but she hears it. And I said, well, let’s spell book B G G and then K there’s no G in book. So something is not, you know, working. And so I actually paid a hundred dollars out of pocket to take her to an audiologist and audiologist.

I’m like, this person’s supposed to help. And she just gave her a hearing test. She’s like, Oh, hearing is good. Well, that’s, I understand her. She can hear. But it’s something with the processing. So now I’m actually in the process of traveling out of state to find a pediatric audiologist that I found that just works with children.

You know, it’s, it’s a, it’s where family is, but having to literally leave the state, probably pay a couple hundred dollars out of pocket just to get some more answers.

Right. And we, we’ve traveled, we haven’t traveled that far, but we have traveled at times and, and my daughter still travels to see, um, her low vision specialist because.

It’s someone that she connects with well. She knows that she trusts what he prescribes for her and she knows that he hears her. And, um, and so that, but it, it is near family. So at least we can combine family visits whenever we go, but it’s unfortunate that we, I mean, and I even live near a big city, you know, we have families who are in remote areas.

They’re, they don’t have an option. They have to, to pack up and go to have, these, these visits to find out some of the answers there. The, um, so the first question I was going to ask was how, how was her hearing? So she’s hearing all the ranges of the sound.

Yes, she’s hearing, but it’s something about comprehending.

And so I’ve seen it when I’ve had a meeting at school, so that was kind of, um, guys back it up a little bit. So, um, with my daughter, I’ve homeschooled her since kindergarten, and I just put her in school. This, Kind of 2nd half of 1st grade, which was a tough decision. So far, it’s been all right. We’re taking it 1 day at a time, but have set up a meeting.

So, about a month ago, I had a meeting with the principal, the school nurse, the school staff. counselor and my daughter’s teacher and trying to explain, you know, these are the things I’m seeing, you know, when she brings home her work that she’s doing, she just circles every answer. And I say, well, someone correcting you so you know what’s right and what’s wrong.

And she just circles everything that doesn’t really, you know, show then that she’s been doing that since preschool where she just circle everything. And so just showing, I’m like, I can tell there’s something with comprehension as I’ve homeschooled her and just asking her questions. Some things, you know, she’s smart as an elephant, right?

And she gets it, but other things, you know, it’s just that she’s still struggling with. So, you know, realistically with my daughter beyond the epilepsy, you know, knowing that she still puts things in her mouth. So I still have to watch her, um, just other, you know, just other, the, she has a vocal tick, um, and each month we kind of rotate between ticks.

So it was a vocal tick. Um, then it was cracking her knuckles. Now it’s her eye twitching, um, which could be a seizure or the motor tick. And we just kind of rotate between them. Yeah. So it’s like in this, um, kind of going back to your question, you know, it’s like, we’re trying to, for me, I’m just trying to tackle everything at once, but it’s hard between, you know, having a dermatologist, a pediatric urologist, a pediatric neurologist, um, you know, child psychiatrist, regular counseling, and then her getting services, trying to do my best you know, at school and then still trying to find a pediatrician that left the practice and then the pediatric, you know, just like just everyone and trying to coordinate these things and get everybody on the same page.

And coordinating it. You’ve got the working with insurance with all of them and then even just copays alone.

And, and then out of pocket on top of that, with some of that, I don’t know how you do it. That’s, that’s a lot for, for one family to, to be juggling and, but it does, it does emphasize why we tell parents all the time, you are the one that has to be there to advocate for your child. Because. You, you have all these doctors and they may, they may retire.

They may, you may relocate, but you’re the only one as the parent who knows what the school’s saying. You know what the doctors are saying, you know what you’re seeing at home. No one else sees all of those pieces and you’re, you’re there for all those appointments. You’re there to kind of help tie it together.

So we, um, so I kind of want to unpack a little bit of this. So let’s go back to IEP process. Let’s talk about that just a little bit. Okay. When you, how did you start it? Did you, did you go into the school and request that whenever you transferred her into the public school or did she go first? And then did they come to you and ask, can we, can we start this process?

Good question. So I have been fighting since preschool. So my daughter went to, um, in preschool, she went to a private Christian preschool and the teacher had brought up some things just saying that my daughter was doing things that just were not what you’d expect. So like laying on face down on the floor or just staring.

Or, um, just all of a sudden start talking while the teacher is talking, just like having these conversations, things that maybe you wouldn’t expect a child to do. And she’s like, I feel like maybe there’s a delay. And I said, well, can you do testing? And they said, oh, we can’t do anything. So they kind of wiped their hands clean of it.

And then that’s when I did a charter school, but it was virtual school in a way. And I said, can you guys do testing? And they started the process within like a year and a half later, nothing became of it. So then that’s why I put on public school. Like, I want to get her tested. And so in that I try to make it clear ahead of time.

This is what my daughter’s dealing with. Thankfully with good school district, a smaller school. So with my daughter’s school, there’s barely about like, 300 kids. Her classroom only has 10 to 13 kids, which is unheard of. Yeah, very unheard of, but everyone’s really nice, very cooperative, but I’ve made my presence known.

So in that it has been hard to work, you know, when I’m getting a call at least once a week, you know, for my daughter, like, for example, they did, and they weren’t thinking about it, but they said, Oh, we did hearing testing and vision testing. And they didn’t let me know ahead of time, knowing that my daughter freaks out for things like that.

And I’m like, okay, I’m coming to pick her up because that’s just the end of her day. I’m like, Oh, guys, you have to let me know these things. Or, um, you know, there’s one time I felt so bad where I didn’t catch it and they didn’t catch it. She had a seizure in the classroom. And so she put her head down on the table and the other students were trying to wake her up and they didn’t like, she didn’t wake up right away.

And I didn’t know until after everything had happened. So, you know, in this kind of with the school, I’ve had to make my presence known. And so I’ve been in the office and I told them, I’m like, I’ve been in the office so much. I should just put a desk in between because I dealt with the school nurse. And then.

Um, yeah, trying to get them to give her her emergency like medicine since she has like two or three different medicines just at the school and trying to explain this and they’ve actually been really helpful. So they’ve done even referrals to the doctor’s office and been in communication with my daughter’s like specialist, which I appreciate.

And they’ve helped me get referrals that I couldn’t get, which, you know, I’m like, thank you. Just any help that I can get, I’ll take. But at this point, like, I’ve had that 1 meeting, um, you know, the principal, the school nurse, the counselor and the teacher, and then we have another meeting scheduled for the middle of May, but I’m still trying to like, oh, well, you don’t need a 504 plan because we’re doing accommodations.

I’m like, I need something. So, right now, my next steps to call the school district. to see if they can. I just I want her to just get tested for ADHD. And someone said, call the school district have to do it. And so my case, you know, school is done early June, so time is running out little by little. And so right now, I’m just just trying to get my foot in the door.

But right now, so I’m at that point where I’m still trying to knock on the door and I feel like someone opens the door, but it keeps getting closed in my face. I’m like, no, I need that door to be open so we can get someplace. So, you know, we’re doing accommodations. I appreciate the meeting, but you know, still my fear of like, okay, we have school testing coming up in May.

You know, the last my daughter had testing, she fell asleep. So I’m like, and she cried through it and she didn’t do well on it. So knowing that she’s not able to make it through that. So what is the plan? You know, that she just had her first field trip. Which she survived. It was rough, but she, you know, I let her go because at first I was afraid and the school nurse went, you know, but at this point I still feel like I have a long ways to go.

Have you talked with her much about her diagnoses and just, just school? Cause you know, cause you’ve gone from homeschooling now into the public school. So that was a shift to begin with and you had the other, the charter in between. So, so moving between the two, have, have you talked with her much about this yet?

And how, how would you advise to other parents? How much do you share and how do you share that information with your child?

Good question. So I think you really have to gauge like what your child understands and how much they need to know. With something like epilepsy, I’m really trying to, um, I don’t want her to be scared, but I want to be honest too.

I’m trying to get her to be more independent, like having to take her medicine. So I won’t always prompt her to do it. I’ll put it in front of her and she’ll take it. And so I’m trying to help her with that. I tell her, I’m like, okay, what you struggle with is you have too much lightning in your brain. And so that’s how I kind of explain it to her.

And, you know, parents that are listening. Yeah. Something that’s not as scary. Thankfully, she hasn’t had like tonic clonic seizures, but she’s had absent seizures and tried in the, you know, her doctor recently said, well, how many different types of seizures? Seizures does she have? And I’m like, I don’t know.

I’ve noticed at least maybe two, you know, and I get that it can be scary. And for my daughter, um, sometimes for her, her seizures like a popping in the back of her head. So she’ll cry because she’s like something popped in the back of my head. Um, doctors have said that’s a seizure. Others said, no, that’s not a seizure.

And I’m like, well, it’s something that’s making her cry. So in that it’s there and she knows and there’s nothing we can do to prevent it. And after it happens, um, I can rub the back of her head, but there’s nothing I can really give to her. You know, so that’s, that’s real. And she goes through it. Um, I told her, you know, at school that we don’t always have to tell everyone everything.

Um, I am cautious, you know, sometimes like when she goes to after school programs, summer camps. Um, you know, at church and the children’s ministry, other things, you know, kind of cautious about what we kind of tell people and what we don’t because I don’t want people freaking out. Um, even with family, you know, like I had, um, you know, family member like, Oh, we’ll just leave her with family and we’ll go to the movies.

And I’m like, no, I’m not going to just leave her with family because they don’t know the signs of symptoms, you know, and I get just, Oh, just go to the movies. I’m like, no, I know that at night. That’s when she has seizures. Um, I really work really, really hard to have her not get overly tired because it’s one of her triggers.

Um, certain sounds, you know, are difficult for her. So I don’t know, like, for example, just flushing the toilet can be a lot for her, so she has her headphones, you know, and sometimes not knowing, you know, okay, I just have my purse, you know, so just knowing what will be too loud for her, what will be upsetting for her, what’s a trigger, what’s not, you know, different things.

So, You know, in that, um, just speaking to parents to, don’t be afraid to get your children counseling. That was one thing that was a struggle because due to her age, like it was hard finding a counselor, like, oh, she’s too young. And so, you know, I was just trying to find someone, um, even like it took, I called over 14 people when my daughter was like almost four and a half, five, about almost five, right before she turned five and no one would see her.

And I’m like, well, I want someone to just talk her through this and process everything with her. And I did find a counselor through the charter school, but they’re like, oh, she needs a long term counselor. And I’m like, yeah, well, that’s the issue. I can’t find a long term counselor. Now I found a counselor and, um, it was good, but then their schedule didn’t match up.

So then they put us on the waiting list for three months. And then we found a new counselor. She was super nice, had one session, and then she left the practice. So now we’re back at square one. And sometimes now the counselors are like, oh, we only do virtual. And she just doesn’t respond well to virtual, you know, sessions.

So, um, she goes to counseling in school, but it’s different. She’s like, well, we just play games. And she’s like, I don’t want to talk in front of the other kids. And I get it because you’re six and you don’t want everyone knowing you’re business in it. So now it’s that whole thing to find a counselor that has a schedule that matches up that’s a good fit that just works out in the midst of us trying to move and figure out everything. So, you know, but don’t be afraid to just have a counselor just kind of step in or someone that’s not you as the parent talk to your child, because sometimes they open up more. Like for me, my daughter has this whole thing of, Oh mom, is this normal?

And I’m like, I don’t like that word normal because how do you measure normal? But in that to say, okay, um, you having hallucinations, I don’t want to say it’s not normal. It’s it’s technically it’s not, but in that just trying to leave space and say, okay, you know, what did you hear today? Or what did you see today?

You know, it’s like, well, I saw the Easter bunny at the airport. Well, I looked, I didn’t see the Easter Bunny at the airport. She’s like, well, I was on the school bus and another kid was biting another kid and he was dressed like a piñata. Likely that wasn’t real, but we just have to talk through it, not to alarm her, but saying likely that might’ve been a hallucination.

And I said, well, did your friends see it or how did your friends respond? And she’s like, I got really scared. So just giving her ways to cope because I can’t be with her when she’s on the bus. I can’t always be with her all the time. Okay. But in this, I can’t really stop what she’s seeing, but in it, we’re just tracking it and then say, okay, this does happen.

This is what you do and realize you don’t have to give into what you hear or what you’re seeing. But at the same time, it’s scary as a parent, because it’s like, well, my hands are tied, but I’m just trying to kind of prepare her for it, help her to be independent, but then still try and figure out what’s going on.

I’ve. I’ve seen a lot in like on social media and all of parents who have, they’ll start their day with like a different mantra with their kids, things like that. You know, you’ll see kids on Instagram doing, I am strong, I am brave. Do you do anything with that, like that with your daughter? Have you found anything like that that would help her?

Good question. So I’ve had to tell myself just personally that I’m capable and I’ve had to keep reminding myself of that because sometimes it’s just, it’s overwhelming. Sometimes like the doctor’s office will call and like, well, when do you want to schedule? And I’m just like, I can’t. Schedule one more specialist right now.

That’s going to have to go the bottom of the list, you know, and so with my daughter just telling her that, you know, she’s still smart, even though she’s not like the other students. So it’s been interesting. Like, um, with my daughter’s class, she has a, um, the teacher has her paired up with another kid that does like really well, which is good.

But then at the same time, I feel like it’s easy to compare yourself because she has someone that’s her same age who’s there helping her with her work. So it has its benefits. But to me, at the same time, it has its drawbacks because you’re thinking, she’s like, well, I’m not smart like her. That’s what she’ll tell me. And she’s like, well, mom, I, um, due to her memory, she had, she was doing something and she forgot where it was and all the kids laughed at her.

And then by the time I got to, you know, my daughter and she’s talking about the story, then she was crying and she’s like, oh, because I couldn’t remember and because I’m not smart and I’m not this. And I had to tell her different kids are better. are better at different things and other things. And, you know, it’s hard to tell her, okay, because you have your seizures and your medicine, this all impacts your memory.

And sometimes you’re just forgetful and clumsy too so that just kind of, you know, kind of rolls into my daughter gets hurt a lot. So in that, you know, it’s just like having to remind her, you’re okay, you’re special, you know, you’re one of a kind. I keep telling her, I’m like, you’re going to change the world someday and different things.

I keep reminding her of that. Um, but it’s hard when, you know, of course she sees her other friends, she’s like, well, why does my friend get to do this and why can’t I do sleepovers and why do they remember this and why can they dress like this?

When you’re going to find too, that you’re at the stage that it’s still hard because there are those huge differences.

But she’s going to find her tools with that support that she’s going to get in the resource room and the specialists are going to be working with her at school. They’re going to be teaching her some of her skills that she needs. She may not do the mental math as quickly, but she’s going to learn how to do a tally on the page.

She’s going to learn how to do something that’s going to be her way of keeping track of those numbers so that she can do her version of mental math. And she may end up being faster than the rest of them in three years. Right now though, she’s noticing that, that, that difference. And I’m, I’m with you whenever they have peer mentors within the class, when it’s the same age, it really is hard.

And if they get kids that are a year or two older, it doesn’t seem the same. Because they’re looking up to them, they’re supposed to be smarter than them already, you know, so, so it kind of helps with that. So, um, so it may be something to kind of put in the back of your mind, a conversation may have to happen sometime asking.

Can we have a teacher’s aide in there that’s helping her instead of another child so that she’s not feeling that way? The, um, I think, and I’m just, I haven’t met your daughter, but I’m thinking she just needs to be poured into, to know how beautiful she is, how smart she is. How, and, Special in a good way, not special as in you’re different special, if you can find the way to make sure that she’s hearing that message, which is what what I think you were saying that, that she, she was created as a special person.

Um, and she has a lot to offer because she has friends. In spite of all these things she’s having to face right now, she’s making friends at school. And that’s, that’s nice to hear.

Yes. That’s true. And thank you so much for just your kind words. She’s my social butterfly.

I’m tired listening to how many different specialists you’re already working with.

And then on top of how many you’ve had to switch in such a short time, you’re a single mom. When do you work? You’re running all over the place right now. How are you balancing um, work and, and I mean, I know she’s in public school now, but you can’t totally just let go and walk away. You’ve got to be on call all the time with that too. And getting those relay phone calls with all the doctors and therapists and everything. How are you balancing all that?

Yes, so as of last year, it gives my head like 2 or 3 jobs at once and then started something my own. So I was a notary and then working multiple jobs and that it was just too much. And then, um, doing something from home and then that became a little too much too, um, as of recently.

So I’m a registered behavior technician. So I’m working with kiddos that have special needs and doing that part time. But as you know, that’s still a lot of times doesn’t pay the bills like it’s for as much work that we do. Like I love the kids and we feed them. We’re potty training them, trying to keep them from eloping and keeping them alive and teaching them all these things.

And it’s rewarding, but at the same time trying to check my phone while trying to check on them, make sure they’re not choking and taking them to the restroom and potty accidents and other things. So. So honestly, I’m taking it one day at a time. I don’t get child support. I don’t get alimony. So for those are like, oh, I’m sure she gets something on the side.

I have, um, in the process of starting something else for myself. So, um, becoming a life coach, um, which has been an exciting journey. Um, it has not I’m still in that 1st kind of year. So don’t have that income coming in, but little by little, I’m like, I know that it’s going to come. So it’s providing with that flexibility.

But right now, just having to kind of work part time while I can and then I do inspections. To make sure things and I’ve worked with the company doing field inspections. So that’s kind of nice because it’s like, okay, I do an inspection for an hour and it helps out. But it has been hard trying to find something that’s work from home, but that pays, like, I’ve done things like in the field, but that’s just as hard trying to kind of get back and forth between my daughter’s school.

Like, as I stated, like, for me, a lot of time, I get a call at least once a week. You know that something’s going on or they say, Oh, you didn’t sign this paper or, Oh, the school nurse calls. And she’s like, Oh, I need this. And then they’re like, Oh, you missed a signature. And then trying to email my daughter’s teacher and say, okay, where’s her homework?

And she’s lost 5 jackets and all these different things. And, you know, they pick her up at one gate, and my daughter’s at the back gate and she’s like, you forgot about me. And she’s freaking out, you know, all these different things. I’m like, okay, can she wear her sensory necklace in the class versus not wearing it? And is she still, because my daughter said she puts things in her mouth, she’ll eat holes through her t shirt.

So it’s all these different things, you know, that we’re, we’re dealing with at the moment. I’m like, okay, make sure she’s not putting things in her mouth, you know, in the classroom because she does it at home. So I’m kind of going back to your question. I still work because I have to eat. But at this time, um, that’s kind of the challenge I’m facing is to move close family to really have more support.

But that means moving out of state, but then also being a caregiver to family. So going from taking care of just my daughter, where I am to now taking care of my daughter, my mom and my grandmother, which, you know, would be interesting. That’s just me once again, taking care of three people, but then I get family support or moving to another state that’s cheaper, but having no support, which I’ve done before and I made it work or staying where I am and being close to my dad’s father. Um, but in this, um, he’s not really kind of believing it. So that’s a kind of another piece is that it’s 1 thing when you’re co parenting or you’re co parenting with someone that doesn’t like, believe that your child has something going on or really doesn’t see it.

See it because he’s not the one, you know, at the doctor’s appointments and speaking to the specialist, it’s just me. So at this time he is like, well she doesn’t need medicine, we just need to love her more. And I’m like, no, she can die from this. You know? So for those that are going through it, I get that it’s hard when you’re just trying to really convince you, it’s hard enough to convince school what’s going on. But then I have to convince family too is just as hard.

But a lot of times I know the extended family are hard, but, um, but you’re talking about more your immediate family that’s even. That’s even more that you’re having to carry with that.

Exactly. They’re just like, Oh, well, she, you know, the whole thing, they say, Oh, if the child doesn’t eat, you know, they’ll just, I said, I’ll give my daughter something to eat.

Like, Oh, she doesn’t eat. Um, she’ll eat it eventually. And I’m like, no, you don’t get a lot of times the kids that have special needs. If you, you know, if you put something in front of them, they just won’t eat. And then we just had this whole other slew of issues, you know? So it’s just like. Yeah. Exactly.

Kind of get people to really understand they’re like, Oh no, just leave it there. Show you to eventually like, no, that plate’s been here for two days. You know, so.

You mentioned that you’re, um, that you’re starting to work as a certified life coach.

Yes.

Do you have any specific advice or tools that you found helpful that you want to pass on about raising children with special needs?

Yes. Um, a lot of different things. So just really being kind to yourself. Um, so my niche is a little bit different. So I work with, um, women that are struggling due to infertility, miscarriage and also single moms by choice. So moms that are deciding to adopt and foster. And so for me, um, I’ve been in all three seasons when I speak to women, especially starting their family on their own, realizing that things are not going to always turn out as they want to.

As you plan them to, but realize that you can do this because I know a lot of women that are going into it or that are single parents. And they’re just like, Oh, how am I going to do this? When I do about childcare, I don’t have support. And I’m like, you know what? You’re going to find a way to make it work.

You’re going to find community. You’re going to find like for me, support groups, even Facebook groups just help. Like sometimes I don’t even respond, but I’ll just like heart emoji or that care emoji or whatever it is, you know, just to have that connection. But it’s, you know, other people where, you know, they have teenagers that have special needs.

And I’m like, that’s going to be me someday, you know, and saying, okay, their child can’t get a job or they can’t drive or, you know, sometimes up at three in the morning and say, okay, are people going to be kind to my daughter? And many parents I’m sure that’s, you know, that’s what they’re going through. For me I watch my daughter sleep too, just to make sure she’s okay. But just thinking, okay, there are those days. How am I going to do this? How are we going to make this work? Okay. But for parents that are going through it, just realize that when you feel like all your strength has been depleted, like somehow this reservoir of just kind of strength will come and it’ll find you and you’re like, well, how am I going to keep going?

But it’s that whole thing of like, I’m capable. I’m enough. You know, it’s a lot right now. Sometimes you do have to step back. Sometimes people are not going to get it. You know, sometimes your job’s not going to understand. As I say, sometimes family’s not going to understand. Sometimes things are going to be tight financially.

Sometimes you’re just going to have those you know, moments where you just have to say, okay, just breathe. A lot of times I just have to just breathe. And.

Tell my listeners how they can, can work with you if they want to, to connect with you.

Yes, I’m always here. So for me, it’s something I’m passionate about just encouraging others and loving on others.

And just if I give free hugs all day, I’m like, that would be just great. For me, I just know how it is when you just feel isolated. The name of my business is Fresh Start Life Coaching, LLC. And my email is fslcpodcasts at gmail. com. I do offer initial consultation, but even beyond that, if you just want to talk or just get guidance on like, You know, saying, okay, I’m thinking about putting my child in school.

I’m thinking about homeschooling my child. What do I do next? You know, I can speak to both of those. You say, you know, how do I contact the specialist or how do I get my voice heard? You know, I can help you with that. If you’re just trying to come up with a list of questions, you know, I can assist with that.

If you’re dealing with just coparenting, you know, that’s a whole nother thing or just, you know, If you’re in something that’s toxic, I’ve told people, you know, don’t stay in a toxic relationship or toxic marriage just because you’re like, well, I don’t know how I’m going to raise a child on my own. And, you know, different things like that, as you know, like, um, rates of child abuse and even domestic violence are high, you know, for families that do have, you know, at least one child that has special needs. It’s, it’s makes sense in the midst of all the stress and the wear and tear. So, you know, I’m here to listen.

We’ll put your contacts in the show notes too, so that if anyone wants to reach out, they can. They can find you. And, um, so that that’s probably the best way to, to do it there. Um, so switching gears a little bit here.

I’ve been this season, I’ve been having my guests repeat a statement that I read and then finish it. As a way of giving advice to our listeners, and we’ll use this listeners. You may, you may see these show up as, as different clips here and there on social media, but um, but it’s, to me, it’s kind of a fun way to kind of wrap up everything and, and pass on some final words of advice.

So the first one, the biggest challenge I faced in raising my daughter with special needs is…

okay, yes, the biggest challenge I face rating raising my daughter with special needs is just that guilt and feel like I’m not enough. So those 2. so really having to release the guilt as I said, you know, my daughter was at school and had a seizure in the classroom and saying, I should have been there.

I’m a bad mom. I should have stuck with homeschooling and just feeling like I’m not enough. And trying to be, you know, in all these places saying, okay, why, you know, sometimes when it comes to specialist appointments, I can only do so many appointments at once. And sometimes I’m like, well, I should have been able to schedule five specialist appointments.

Why, why not? You know, but just saying, no, she can only handle so much. I can only handle so much, but you know, in that it’s just really having to be kind to myself, releasing the guilt and just realizing that I’m doing the best that I can with what I’ve been handed. That’s it.

All right, let’s try number two here.

So we have one thing I wish I knew starting out as a single parent of a child with special needs is.

One thing that I wish I knew is that, um, the importance of just standing up for my daughter, um, like advocating for her. Like a lot of times I just kind of thought, oh, okay, well the doctor’s going to do the referral so I don’t have to follow up.

Oh, the school’s going to just, you know, send her for testing and I don’t have to stay on them. Oh, family’s just going to understand. They’re going to get that I can’t do this or I have to say no to this. And yet in all of these arenas, realizing that a lot of times people just kind of do the bare minimum, it feels like these days.

And so. So in this one thing that I wish I knew was just advocating for her earlier.

You’re, you’re doing a good job with that. One thing that, um, I didn’t cause it was early in my walk. I didn’t understand back when my daughter was in preschool, but I would pick her up every day from preschool and kindergarten and have her screaming to the car because she was utterly exhausted.

She had used every ounce of her energy just to visually keep track of where her teacher was, where her friends were, where the toy was, and sorting through all those bright colors in the room. And so you’ve already learned how to use those words to pinpoint, not, can I please have this, but this is what my daughter needs.

This is why she needs it. This is what we need to do. It’s, it’s, it’s non negotiable. You’ve already put it out there. I didn’t have that skill, so I commend you on that. Um, but parents listening, Listen to that pattern. It’s not going to be the same for your child, but if you can identify the what, the why, and what the solution is, you’ve already won the battle because now you’ve been able to lay it out so that you know that you’re, you’re able to advocate for your child very effectively if you can state it that way, because now you’re not trying to ask permission for something.

You’re coming in a point of strength and saying, you know, I’m, I’m, I’m here. I’m helping my child. This is what we need to do. And this is why, and not many are going to argue with you on that one. So, so that very, very, very, very good example there of how to do it. And I, I appreciate the way, the way that, that, that you worded that.

Okay. So this is the longest one. So the most important thing I’ve learned about myself through this journey of raising a child with special needs is.

For me, it would just be this inner strength, like just realizing, I know people say it’s cliche, but they say, Oh, you don’t know how strong you are until you have to like, go through something.

For me, I’m just like, learn the strength that I didn’t have a choice, either be strong or not. Like I’ve got to be strong for her. Cause I’m like all she has. So.

All right. So we have two more of these are shorter. Now my hope for other parents raising children with special needs is.

My hope is that you still, um, are able to just show them that love and be that kindness that likely that they might not always see in the world.

So that’s just my, my hope that you’re still able to love them and show them that they have value.

All right. So final one, this is the easy one for you, I think. Self care for me as a single parent looks like

self care for me, sometimes it’s just taking a nap. Sometimes they’re not intentional. I’m on the couch. I’m like, Oh, no, I fell asleep. But in that, um, it’s just like, uh, with my daughter, she goes to school. And so sometimes she’s at the after school program and I was a little leery. Sometimes it has its ups and its downs, but sometimes she’s like, mom, I want to stay later. And I was trying to pick her up right after school, but I’m like, what’s there.

So why not use it? So sometimes self care is letting her stay maybe an hour and picking her up and maybe just watching a movie, maybe just eating a meal. Like, I went to Walmart today and just walked around and I’m like, okay, it was nice to not have someone ask me for a toy. Self care sometimes it’s like, okay, letting her dad take her an extra day.

Sometimes like, I feel a little guilty, but it’s kind of nice because then I can get things done or work a little, um, you work extra or plan something fun for us or different things like that. So, you know, I try not to go overboard, but sometimes it’s just giving myself that hour to just eat a meal and sit down, you know, or just like, maybe not scheduling appointments for her for a week and say, we can schedule them next week or, you know, even like recently I was sick while my daughter was sick and I took myself to urgent care and I said, Danielle, you took care of yourself and I’m like, I was kind of like dying in it, you know, and everything, but, um, I’m like, okay, why is it you can take your daughter to her five appointments, but you can’t even take yourself to urgent for what you feel bad about.

I’m really having to sit down and do that. Maybe it’s just getting my hair done for an hour. You know, I don’t do anything expensive once again, but sometimes it’s just little things like that, or just going to the bookstore and walking around.

Well, thank you for spending the time today to go through this. You, um, you’ve given us some really good information, a lot to think about. And I know parents that are listening at different stages are going to, to pull information from this. So thank, thank you so much for being here today.

Yes. Thank you for just having me and for letting me be here. And just thank you for those that are listening.

I know you can be doing lots of other things, but I just hope that something that was said just encourages you, gives you that strength. And lets you know that it’s not all in your head because sometimes people just say, Oh, you’re just, you know, your kid’s just sensitive or they’re just growing up or they need to toughen up and you’re like, no, there’s something seriously wrong, genuinely wrong.

So just know that, that it’s not just all in your head. You know, you’re the parent and you notice the little things. So, you know, be in tune with that and listen to it and act upon it.

The post 97. Overcoming Guilt as a Single Mom of a Special Needs Child appeared first on Water Prairie.

In this interview, Tonya Wollum, the host of the Water Prairie Chronicles, chats with Latisha Anderson about the challenges and triumphs of raising a child with a disability. Latisha shares her perspective on how parents can empower their children to overcome limitations and setbacks. Latisha shares some of the setbacks she has faced in her own life in addition to having a learning disability, and she speaks of her role today as the parent of a child with special needs. Here are the key takeaways:

Find the full directory at waterprairie.com/listen.

In this interview, Tonya Wollum, the host of the Water Prairie Chronicles, chats with Latisha Anderson about the challenges and triumphs of raising a child with a disability. Latisha shares her perspective on how parents can empower their children to overcome limitations and setbacks. Latisha shares some of the setbacks she has faced in her own life in addition to having a learning disability, and she speaks of her role today as the parent of a child with special needs. Here are the key takeaways:

IMPORTANT NOTE: This conversation does touch on some mature themes, so please use your discretion if you have little ones listening along.

Connect with Latisha:

Order Latisha’s book, Embrace Your UGLY:

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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/

Latisha Anderson is an experienced Master Mindset Coach who has helped countless individuals, corporations, and groups transform their lives. Her expertise lies in providing her clients with the necessary tools and resources to evolve and achieve their goals. With her guidance, clients can develop a positive mindset and gain the confidence to overcome any obstacle. Latisha was diagnosed in Kindergarten with a Learning Disability, and she was in SLD until she graduated high school.

Full Transcript of Interview:

Latisha: That’s where the strength comes from because people realize that they’re not by their self. That’s a good feeling to know that it’s not just me. I wasn’t the only person out there struggling. That’s why we got to stop being so secretive. You don’t have to tell everybody everything, but there are times when you release your words.

Tonya: In today’s video, we’re diving into the world of advocating for a child with special needs. I recently met with Latisha Anderson, a special needs advocate, mindset coach, and author who shared her insights and tips on empowering your child and becoming their strongest voice. Whether you’re new to the journey or looking to refine your advocacy skills, this interview is packed with valuable information.

Today’s episode is a little different format from my usual interviews. We’re jumping in during the conversation and as a word of caution, there are some mature themes that are discussed today, so, please use discretion if you have little ones listening along. All right, let’s join the conversation with Latisha Anderson.

And so you can’t, you can’t always jump to a conclusion that you think it is, you know, and, and this is something that I talk a lot about when I talk, talk on other platforms is you have to ask questions. You can’t just assume that the child that’s in front of you or even the adult that’s in front of you is being offensive, is trying to do something, is being insolent or is trying to not comply with you.

Sometimes there’s something. Totally different going on and you’re just misreading the situation and that comes to us. We have to communicate with each other. We have to ask, you know, I started telling my son’s teachers through the years. Um, did you ask him why? You know, you, you have my permission to say in a pleasant tone, what were you thinking?

Because there’s really more to this story than, than, than you’re assuming.

That, no, really, because you would think as educators they would know to do that, but they don’t, they get, they get so defensive, you know, like my son, he told the teacher that sharing was not caring, and they had the audacity to call me to the school, and they, that was an issue, because he said sharing wasn’t caring.

And I asked him, I said, “why, why is sharing not caring Isaiah?” He said, “because if I give her all of my toys then I don’t have anything left, how is that caring?” I said, “you’re absolutely right. Let’s go home.”

Like, and I stopped saying that because sharing doesn’t mean I have to give you something because you want it, that doesn’t entitle you to anything. And so I had to stop like, and I, and I’ve always been an advocate for my kids. So, when I have meetings, when I would have meetings with the staff in the school, and I’m literally called the regional director over the ESC department. And I said, I think it’s in your best interest to be here because then, you know, back in the day, they used to send notes, like the little progress reports home that was just, Oh, this, this, this, and this, they’re going to find that that ain’t even about his grading because he was struggling in his grades.

I said, so, how stupid is this to send me about his behavior? But you’re not telling me that my son is not passing. I have a problem with that I say and then on top of that I have a problem With the teacher because she started talking to me and she started moving her neck like this And I said ma’am, this is not that kind of family.

I said my son does not come from a dysfunctional household That’s not how we talk. This is a two-parent household because his dad was right there, too I said I’m his advocate. I’m not coming against your teaching methods I said, I’m coming against the system that is designed to keep my son from getting where he need to be.

Now, if you’re a part of the problem, then that’s your business. But I’m telling you, don’t take this personal. When I came in here, I wasn’t going to believe nothing any of you said, because I’m going to believe my son first. And then so like the regional director lady that was there, she was like, and she asked me, Latisha, what do you mean?

I said, because I know him and I know he’s going to tell me his truth. So, you can tell me yours, but in my mind, you’re not telling me the truth. I’m going to always advocate for my son. Now, if he done something wrong, I won’t correct him in front of you. I’ll correct him when we get home because then teachers, adults, they get that mmm and they can be petty like kids sometimes and you know, they want to just say, “Oh, your mom already said this and you know, she said that and don’t keep being bad and all this other kind of stuff.” I said, we’re not going to have that. And I’m not going to give you the weapon to use against my son. So, let’s talk about something else.

Let’s talk about these grades and why you worried about me signing this notebook and this ain’t got nothing to do with his grades. I said, this is dumb. I’m saying I told y’all in the beginning to put him in ESC. Y’all the ones that said, well, no, he’s going to the first grade. So, we’re just going to try it.

I said, you threw my son out the water. You ain’t even prep him. You just threw him out the water and said, okay, let’s see what happens. I said, so, clearly y’all didn’t want him to pass. And so the, like it was on a Friday, we had this meeting by Monday. My son was in the ESC class. They called me on a Sunday, the principal and was like, Ms. Anderson, we just want you to know that we’ve already switched his class home. He’s already, it was like, it was nothing. I said, “No.” Because again, somebody else’s understanding and interpretation because people want to be so offended by everything instead of learning how this person may possibly communicate and we’re not going to do that.

So, we as parents have to be our children’s biggest advocates whether they have a disability or not. You still have to be in the corner for your kid because the system the teachers are not the same anymore and I get it like teachers can get abused you know what I’m saying like physically mentally emotionally But at the end of the day, you can’t take it out on the kids.

That’s not that’s not the issue. You know what I’m saying? What are you doing? You treat everybody the same? No

So, I graduated from college in ’87 with an education degree, supposedly ready to go out there and, and run my classroom. I knew about classroom management. You know, I could, I could flash the lights. I could, I could whisper in and get them to clap after me to get them to, to, to follow what I was doing.

But I didn’t know anything about disabilities, about differences in learning. We were just, in ’87, we were just really uncovering some of that as an educational system, but. I wonder sometimes, and I have through the years as my kids had different teachers, are they just as unprepared as I was coming out of school now?

And I think, I think until they have an experience with someone, it’s really hard. So, a lot of times we as parents are their first experience with having a rational conversation about why we might need to ask our kids something differently, or, or why they may need to have a little extra help. Just sitting in the front row of the, of the room doesn’t always solve the problem.

Sometimes that’s not the solution at all. They need to be on the back row so they can move around a little bit.

Absolutely.

So, I think a lot of times it’s just, it’s a matter of education. My, um, my daughter had a situation in middle school where it was, it was her first major bully situation. She told me about it.

It was just some boys just being, being nasty. So, I asked her, I said, you know, well, what would you like for me to do? You know, do you want me to call the school? Do you want, do you want us to try to have a meeting? And she said, no, they’re just uneducated and they need to, to learn a few things. And she walked away and it was like, wow, I wish I could have done that.

Right. Because they’re more mature than we give them credit for.

Yeah, but, but she was right. You know, as a seventh grader, she already recognized that a lot of these behaviors, whether it’s adults or kids, it’s because a lack of education. They don’t, they, they haven’t met us yet. They don’t know what a lot of these kids have been through in they’re seven, eight, nine years of life. They’ve had a lot of hardships already. They’ve learned to overcome a lot of things. They don’t need to deal with you now on top of all that, you know.

I want to make sure that we talk about what you’re doing too. So, tell me a little bit about your coaching that you’re doing.

So, I do Master Mindset coaching and that is being intentional, like learning how to be intentional, not allowing life to consume the way you operate, right? Because based off what life gave me, I had a learning disability. I was violated, molested, raped as a child. I grew up in an abusive household. My mom and me are only 14 years apart.

So, life was throwing stuff at me. You know what I’m saying? Like, boom, boom, just hitting me with stuff. And that started to condition the way I reacted, responded, and replied. So, I was the mean girl. I was the bully. I was the rude grandchild. I was the mouthy teenager. I was the fast in the behind. You know, girl nobody couldn’t tell me nothing.

But life, was giving me adult situations and adults were reacting to me as if I was an adult. You get what I’m saying? I was not. And so, if you don’t get out of that mindset, right? That life has been doing what it does. And life was tearing me up. Like it was just fighting me like this. Then you never actually grow.

You allow life to shape you. You allow circumstances to shape you. And it wasn’t until I got older and I started to realize that I didn’t want to be the mean girl. I didn’t want to be the one that when I walked in the room somebody assumed a thing. I didn’t want to always when I had a conversation or a disagreement that I automatically started yelling, right.

Because that’s the only way I knew how to communicate. Because for so many years I was crying out for help, but nobody knew that that’s what it was. That I was just angry. Well, who would not be angry if your father is being abusive to your mother and you’re seeing this, right? Who would not be angry if you’re going to your aunt’s house because that’s supposed to be the safe place and that’s where you’re being raped, violated, and molested.

Like, who would not be angry and then you don’t know who to tell because the violator has told you if you say anything, your dad’s going to go to jail and it’s going to be your fault, right? So, life is still conditioning me. Life is still bullying me, life. You get what I’m saying? And it’s just kind of like how do I shift that mindset?

I don’t want to be having a conversation and now all of a sudden I’m yelling. Like we’re screaming and yelling at each other and it wasn’t, it literally, I got older, I realized like me and my cousins could be having a conversation, but you would think we were straight arguing and fussing with each other, right?

Because It’s like why all of us that’s how we talk because that’s how we communicate, you know in the house and being told young you know, um for my grandmother. I love her now. I love her. She passed away Um, and I love her but she’s the one who literally told me God ain’t hear nothing I had to say He didn’t want to hear me and you know, and then I’m 10 and my auntie walks in and at 10 years old, and it’s like, I love these people now.

Like we’ve all matured and grown, but then, but then, um, when I was like in fifth grade and she walked in the room and me and my cousins were playing and she said, don’t play with that —. And I was like, I’m 10 and so I walked out and I was crying. But my grandma, again, because I’m the mouthy one, I don’t want to listen, you know, nobody can’t tell me anything, but I’m being abused on every level, emotionally, physically, you know, even spiritually because now you’re telling me God don’t even hear me. So, it’s like, what did I do that was so wrong that your words are attacking me? To physically now we physically being attacked because my aunt and me had it like we went blow for blow and I’ve been tall Since I can remember so she literally said she wanted to fight me for a long time and I was like, okay I was in fifth grade.

I was 10 and Not even understanding any of that. And I just remember at like 16 is when I gave my life to God. Like, that’s when I got saved, right? But that didn’t stop the emotional issues and the mental issues that had already started to compact my life. So, then I caught myself every service. Like, I’m going to the altar.

You know, I’m repenting every service. I’m trying, but nothing’s really changing. And it wasn’t that I did not want it to change, it’s just that I wasn’t in the place to understand that I had to intentionally target what I wanted to change. I wasn’t sure how to articulate that, right? I didn’t know how I was going to be able to do it because nobody had shown me how to do it.

Nobody who was in my bloodline knew how to do it because they still operating in the trauma of their life. My mother again had me when she was 14. My grandmother got married at 13, was in a very abusive relationship. The husband kidnapped my auntie, so, life. Was conditioning them, right? She was born in, my grandmother was born in 1945.

So, you know, and they were an interracial family. So, they couldn’t even go into town together. Like it was one of those things. And all they kept doing was passing down the trauma, the hurt and the pain from generation to generation. You know, a lot of people like to say generational curses. I like to say generational silence.

If you break the silence, you break the curse. If my grandmother had told her daughters, don’t let grown men touch you that should not be touching you, then my aunties and my mom then would not have necessarily been violated. And if they had said Tisha, you know, and the rest of my cousins, they had been clear about what that was, right?

Then again, almost every woman in my family had been violated. Like literally again, nobody’s saying nothing. So, the auntie who called me, you know, a harlot, she didn’t say harlot, but the one who told me that she had been violated and raped and was told it was her fault and had gotten in trouble. So, she took that trauma and passed it to us.

I’m her niece and her daughter. So, she talks so harsh to us, right? Because that’s what was done to her. And so, again, going and realizing that dang, I got the ability to do these things like I wanted to own my own business, but I got a learning disability. So, I struggle with reading, I struggle with understanding certain things and my patience is not that long when it comes to certain things.

And it’s just like, wait a minute, like, I don’t want to be this way. So, it wasn’t until I had my third son and I had to learn how to be intentional about stuff. Stop letting life just knock me, you know what I’m saying? And it’s like, I had to get strong and be steadfast. Like the Word says, be steadfast, unmovable, always abounding.

Like you gotta be clenched in it. And you’ve got to be so sturdy in your truth that you are willing to embrace. Like, I had came out, I wrote a book and everything called Embrace Your UGLY because that’s how God gave it to me. I had to embrace those things, those ugly things. Ugly means displeasing to look at.

I say ugly is displeasing to look at, displeasing to hear, displeasing to think about, displeasing to know. Because sometimes those ugly things are what torments you. the most, right? And I had to embrace it. And again, God gave it to me. “U” is for unique, “G” is for genuine, “L” is for love, and “Y” is for you. You got to embrace your UGLY.

Like, we all ugly. Everybody. No, life can throw you some hard punches. What are you going to do with it? And I had to learn how to embrace it. And when I embraced my truth, the violation, The rapes the abuse when I embraced all of that and I didn’t embrace it all at the same time Because I couldn’t have done it I had to acknowledge the pain that came with it and then you know Like when you embrace something you break it in clothes, but when you do that that gives you the authority to release it And then I had to release it and I released it one by one and some of the stuff came back Because you get again I’m in my 30s when I’m getting these revelations, right?

Um, so, it was coming back to me, but I didn’t hold on to them as long as I was holding on to them And then so my disability the way I processed information Had equipped me to hear what people was really saying even when they were not saying so I knew how to break it down You And say, okay, so, this is what you’re saying, and they’re literally staring at me like, how did you, you know, how did you put that?

Wait a minute, you know, the very ugly thing that made me embarrassed and ashamed is the very thing that God used to uplift somebody else. But I had to go through it to tell you how to intentionally shift your mindset and I’m adamant about that, you know, and so it’s just like it evolved over the years because just mindset matters And then last year I went through this dramatic transformation, right and in 2020 I found out that I had a brain tumor that was benign and then Um, it’s like they say don’t worry about it.

We’ll see you in 40 years. So, I’m going by what they say in two years You My hearing and my right ear gone. I started getting bad headaches, my dizziness, I couldn’t turn my head, none of that stuff. And I go back in May of 2022, and I get an MRI, and the MRI say that the same tumor that was slow growing, that they not going to see me for 40 years, had doubled in size.

It explained why I was getting the headaches while I was getting didn’t. Like turning my head, you know, again, now my mindset and my faith, they got to come together because a lot of times that’s what keep us from achieving our truth. And because our mindset is horribly stricken and our faith, it’s just saying, but we ain’t really live, right?

We just stand. And so sometimes we’ll have our faith in something, but our mindset is so stuck on what life threw at us. That we’re accepting and because again, fear and faith, neither one of these need proof. You don’t need proof to have fear, and you don’t need proof to have faith. Neither one of them.

You just see the evidence and the manifestations of whatever one you are connected to. Right? So, if it’s fear, you’re going to see all the fearful things manifest. If it’s faith, you’re going to see all the faithful things manifest. But, before that, there’s no proof. Right. So, again, I wrote a book, Embrace Your Ugliness, everything.

And then they telling me this tumor that I’ve been believing God gonna dissolve. I done changed my eating habits. I went vegan. I’ve been praying, you know, just, oh, touching my head and all that kind of stuff. And God’s gonna do it and speak in positive and walk it in. I wasn’t just talking, I was walking in.

Heh heh. Before 2023, I got one of the worst headaches I ever got in my life that I just stayed in the bed. I was still encouraging people talking on the phone and everything, not knowing what was really happening. February the 27th of 2023, I go to the ER because the headache won’t go away, and I had a conversation with my family, like I was about to die.

It was just weird, like I knew something wasn’t right, but I wasn’t quite sure what it was. And then. I go to the ER in Tallahassee, and they come back in and they basically say, Uh, Latisha, we’re glad you came in here today, and they showed me the x rays, and my brain was swelling. Which is why I kept saying it felt like my brain was coming out my skull.

Then March 1st, I had to have the first emergency surgery. And then I had to wait until the 28th of March to have the second surgery. And that was 16 hours long because the tumor had been so big that there was no more room. And so the tumor had already took the hearing, right, and the nerves, and I couldn’t really close my eye and my smile was not the same.

It was already doing those things. And I was, I’m not going to lie, I was very disappointed. With myself and with God because I was like now wait a minute You said we ask and it shall be given. If you knock the door gonna be open if we seek you we gonna find you now wait and He had a whole conversation with me and he was like, but that’s not faith That’s you wanting to get what you want and I was like, but ain’t that what that’s what the people say you said now That’s what they they told me you said If I ask it shall be given and the example he gave me Was the one with his son, Jesus, not his own son, his only begotten son, right?

And he was in the garden of Gethsemane. And then when he was praying so much, he was sweating blood. And he was saying, please let this cup pass from me, right? But he said, not my will, but your will be done. That’s the faith. The faith, cause see, Jesus was like, do you really want me to go through all this stuff?

Like a match. I got to be beat. All this, and these people not gonna even really be with me like this. You don’t see a life. My, my crew don’t feel asleep. Like you, you really want me to do this. But the faith is not believing that what you want is gonna happen. The faith is knowing that what God wants to happen is going to happen And the faith is that you don’t even got no proof about the outcome You just believing and knowing the outcome is going to be that he gets the glory Because a lot of times we want the glory.

We want the miracle. It’s our miracle I didn’t I didn’t I didn’t do nothing for this miracle. It was him He did this is his miracle. This is his doing I’m a manifestation Of his miracle and so going into that shifted my faith Going into this process shifted my mindset to where they had to become friends because now I’m being told After the surgery, I’m gonna need a trachea.

Now I’m being told after the surgery I’m gonna probably have to do a couple of months in a in house rehab That’s what I’m hearing. And so going into the surgery a very unusual peace You know what I’m saying? That peace that surpasses all understanding. This is when I had my true encounters with God.

This is when everything started to come together. This is when I kind of sort of started to understand His vision for my life. Not my own vision. I had already went through the bumps and bruises. In my mind, I had already been through enough. Why are you going to do this to me? You know, like, like God, I done been through molestation, rape, abuse, bullying, then being bullied, bullying people and being bullied.

I’ve been through all this stuff.

More than enough.

That’s what I’m thinking. I’m like, I’ve been through more than enough. I think I’m qualified to be, you know. What am I doing here? And he was like, that’s so cute. However, it’s something else. And so I had to shift because each process in your life requires a different level of faith. And we, the faith I use in 2023, it’s not going to get me through 2024.

You know how they say go from glory to glory to glory. That’s how faith shifts. Because the faith that got me through being violated, you know, molested, raped, all that stuff. It ain’t the same faith I needed to get through this brain surgery. It’s not the same faith I needed. You know what I’m saying? This is a whole different level of faith.

To where God had to literally shift my mind and say, He said, what you scared of? All you got to do is go to sleep. And I was like, wait a minute. Wait, wait, wait. Wait, you know how you just have a moment. He’s like, he said, Latisha, you’re not doing the surgery. You’re not the one that’s got to make sure that you do it accurately.

You know that you get it. All you have to do is go to sleep. You ain’t going to feel nothing. Just go to sleep. And I had to rest in that. So, the only thing I remember from that day is that when I seen my surgeon, cause he looked like Superman, he looked like Clark Kent. And I said, Hey, Superman, and he said, Hey, and that was it.

That’s all I remember. They said towards the 16th hour, I started waking up. Like my body was like, that’s it. I’m done. I’m over it. That’s what they said. I remember when I was back in the room, I opened my eyes and I just seen a guy standing beside me. I didn’t know he was the one that was coming to take, you know, how to put the thing in your mouth so you can breathe or whatever.

He was coming to take that out. So, I was like, no, I seen the dude, you know, like you in and out and stuff like that. And so my husband and them were prepared for me to sleep like the whole day. But evidently on the 29th by seven o’clock, I was awake and alert and just was like, Hey, you know, like talking and the staff started coming in and we were like,

So, no tracheotomy.

They had to bring, you know, they bring, they brought ice, water and crackers, graham crackers to see if I was gonna be able to swallow and stuff. But by the time she brought it, my mom had already brought me a sub, a veggie sub because again, I was vegan, so, and I up eating the sub and she was like, Leticia, she had the stuff in her hand.

She. Again, again, this is how His miracles unfold because then the conversation started like what was happening was getting to the doctors and I wasn’t like, I didn’t see their reactions or hear them, but I knew they were coming in because I had two surgical teams, you know, like I had, uh, One who was doing the brain and then the ear nose and throat person.

So, that was the one that had to guide him through making sure like everything was like it need to be that he ain’t cut Nothing. He wasn’t supposed to cut and it’s just like your mindset has to be prepared for the after Right? Like we go through stuff, but our mind isn’t necessarily prepared for the after.

In my mind, I was never going to have no surgery. Neither was I going through radiation. I wasn’t doing none of that. That’s how I saw my miracle. That’s not how God saw my miracle. You know what I’m saying? And that’s not how he saw his miracle, because it’s not mine, it’s his. And so through that process, I’ve seen myself elevate, even my own mindset.

Even my own shifting, even learning how to create a plan within the midst of a plan, right? Have you written it down? Have you written the vision? Have you made it plain? Like, have you done these things to prepare? Because again, faith, there is no proof. So, what is it that you want to do? This year, 2024, I’ve had the most speaking engagements.

An invitation to speak in podcast interviews that I’ve had since I started my business and I started my business 2010. And then in 2017, it shifted. So, 2010, I was doing mentorships and stuff like that within the community and I was doing dance through the arts like church music, I think they call it praise dancing.

And then it shifted in 2017 to this. And in 2024, I already have speaking engagements all the way until October.

Again, His will. But you have to shift your mindset. And it’s a daily, daily thing. And again, I could use a lot of excuses. I can say I have a learning disability I don’t read that well, I don’t talk that well, you know, and again the fact that I articulate as good as I do.

Very well.

Compared to the fact that I don’t these muscles over here these nerves they’re gone How do I explain what I do?

I am the example of shifting your mindset that is the miracle, right, that I’m talking to you. Clearly, there is no slur in my speech, you know, and I may not look like how I want to look, but I’ve gotten so used to it that when I see myself communicating with you, when it’s looking back at me, I no longer see the issue, you know, like how I can’t think of his name But he had a thorn in his flesh in his side And you have to get to the place where you don’t even see it no more Where it doesn’t even disturb you anymore because when you don’t see the issue other people don’t see the issue It’s when you keep seeing it that’s because that’s why they keep seeing it.

But when you no longer see it That’s when I realized my faith and my mindset, it was like doing this and I had to wear it every day. Faith, you got to put it on every day, put it on before you go to sleep and put it on when you wake up. It’s every day.

So, I have some questions for you just through hearing your whole story and I love that you share so openly about your experiences.

Any one of those issues that you faced growing up would be enough to put somebody aside? And God has protected you through all of this to bring you to where you are today. And, and, and I love that, that you’re so open about this, but I wanted to go back to when you were younger, you talked about how you were, you, you, you would yell back, you would push back and all this.

But that you didn’t want to be doing that. Did you recognize as a young teen, I’m thinking those are those, those tough years where you get all these tough girls out there, did you recognize that you really just wanted to be loved and to be accepted and not to have to deal with all that? So, with you inside, you, you, you, you saw that in yourself.

Yes. Cause I would cry instantly. I would say it as it came out of my mouth and it could be the most harsh, evil thing I could think of, I would feel so bad instantly, like it wasn’t even, it took, it didn’t take days and then tears was starting to fall down my face. Like as I’m seeing it, as I’m being the mean girl.

As I’m doing what’s been done to me, I’m crying. And then, so, you know, people think that’s a weakness. So, I started again because I think a little different and be like, you better be glad I’m crying because as long as I’m crying, you’re good. But when I’m not crying, it’s a problem. And that was true because when I was not crying, then the empathy or the sympathy that was behind what it was that I was about to say, you weren’t getting that.

But as long as I was crying, that was that connection I had that this is not right, you shouldn’t be doing this. You know when people would be like, she’s so mean, don’t play with her. And it’s like, oh man, you know, like your heart, that, that made me emotional right there. It just sink, because that’s not who I wanted to be.

That’s not who I woke up and said, I’ma be the mean girl. You know, and even in elementary school and in middle school is when I remember and it sticks out to me and I feel so bad. I can’t even remember the girl’s name. And she was, you know, she had the blonde hair. She was like pale and everything. And she was giggling and laughing with her friends.

She was not talking to me. She was not doing anything to me. I’ll, I’ll remember this day we were outside. And her teeth were kind of yellow, right? And I was like, man, I know my teeth are yellow, but yours look like gold caps. And from that day forward, I felt so horrible. She turned so red in the face because she had not done nothing to me.

That girl hadn’t done nothing to me. She hadn’t said nothing to me. I don’t even know who she was. Right. And it’s just like, how can you be so evil?

Well, cause you were hurting.

Yup. And because they picked on me, you know, like people picked on me. So, I’m going to pick on somebody who’s weaker than me, but I didn’t want to become what was happening.

And I realized that I was in eighth grade. I know exactly where I was at. I know I was in sixth grade at Greenwood Lakes Middle in Florida. And I, I still remember that day and it sticks with me and I am 45, about to be 46. And I still remember vividly that day. I still remember her face and what her teeth looked like, very clear.

And it’s like, I don’t want to be that girl. I don’t want to be her. I don’t ever want to be, I don’t ever want my words to destroy someone. And that’s why I always say words have power. We give life. Words have life, we give them power and you just got to realize that it goes hand in hand.

Well, the reason I ask that is because we were talking earlier about how our kids can be misunderstood and sometimes we have to ask the right questions to kind of get behind what the behavior is.

That goes beyond just kids who have a disability or have a learning disability. I mean, if we, if we could somehow find the way to think the best of everybody that we met. I couldn’t even imagine what the world would be like because we all respond from that young age, five, six years old even, we’re already doing it.

You know, we’re reacting to the emotion of the moment. We’re trying to cover our own shame, our own guilt. We’re trying to make someone else feel worse so that we can feel better. You know, it’s a convoluted logic. But a lot walk through the world and that’s how they face it. That if I can make you hurt more than me, then I’ve won, but nobody won in that situation.

Everybody’s losing on that one. And as you shared generation, you know, your, your, your grandmother, we’re, we’re going back to, you know, year after year, generation after generation of just hurting women that are coming through here who didn’t know how to fix the problem. So, responding just like you did, they were, you know, every time doing the same.

Thank you for making the change and breaking this. And I’m so glad that you said that you have a good relationship now.

Yeah. Well, my auntie, she had a nervous breakdown during COVID. So, like 2020, because my other aunt brought up that my aunt had been raped. She did it. And mind they’re both in their sixties.

So, what would make this come up out your mouth? And my auntie just it triggered her. But again, even though it was a bad thing, it was needed. She needed it because she didn’t realize that even though she was in her 60s, she still was carrying that baby with her. She was still caring that hurt. She was still carrying that anger.

And my other aunt, she was still carrying it too, you know, cause she said it out of spite. I don’t even think she know why she said it. And my aunt had to literally, she literally had to be —– like she had to —– herself. The doctor said, you’re going to do it. I’m going to do it. But if it was not for that, my aunt would have never got the help that she needed.

She needed to see a therapist because she had never seen it. She didn’t know how to articulate the hurt and the abuse. So, yeah, it was a bad thing because sometimes God always don’t do things the way we think He’s going to do. You know, we wanted to be pretty. He said, no, this is not going to be pretty.

This is going to be ugly because it’s an ugly thing that happened to you. So, I’m going to need something ugly. You know how you got to just push it out. You know, you got to squeeze it because you need all that infection to come out. And when you’re squeezing like a bump, that don’t feel good. But you got to get what’s in there out and that’s what He had to do.

And I, I felt bad for my aunt, but it also was like a relief because then her and her daughters were able to have a real conversation about what life had dealt to them without being angry. And now one of them, the oldest one, they didn’t have a relationship. They have a relationship now. So, it’s just kind of like, it was an ugly thing, but it had happened.

And so I’m thinking of those that may be listening, you know, most of my audience are parents of, of young children with disabilities, and they may, they may be thinking, well, I can’t really relate to this, but I think you can, if you’re listening to this, because you’re, We’re, we’re talking about specific situations that have happened in Latisha’s life, but your child has issues where they’re going to sometimes be in a situation where they’re misunderstood, where they feel like they have to prove themselves. And if you can address this understanding, then I think this conversation is valuable for you to hear that and to know that behind the behaviors, and it may be that classmate that’s, that’s bullying your child.

If you can help your child see past the bullying. That may end up being their best friend if they can figure out how they can make that connection. And, and we always say this, but I think it’s absolutely true that the behavior, there’s always something behind that behavior. And a lot of times it’s pain that’s reaching out.

And from what you’ve shared, You, you, you’ve exactly described that. Um, like with Emily, when she was describing when she was in middle school, the boys, they, they just didn’t understand. They were just, just not educated enough to understand the right thing. And, um, they did not become friends, but, but she didn’t carry any grudge against them.

And that’s the healing process. Like that’s part of growing up, like. Because if you carry the hate and the hurt, they’re winning. Like I tell my clients this all the time. If somebody can come in a room or you could hear their voice and they change how you react, how you respond, how you reply, your whole mood, they control you, you’re losing, so, let it go. Now, I can easily say that now, but I couldn’t say that, you know, like, it sounds good now, but you know, I had to learn how to let that stuff go because it wasn’t until like one of my violators that he died, right? And I tell this story because I need people to understand, like, how life can have you in the castle.

And my cousin called me because he, my violator, was her father, right? So, she crying on the phone to tell me that her daddy died. And I’m crying on the phone, right? Because I’m like, I’m crying because she crying, but then I realized that ain’t really why I’m crying. So, we got two women on the phone crying over the same man for two totally different reasons.

Now, after I walked her through everything she needed to do, I got on the floor and I stretched out and I was like, God, I don’t understand this. I’m just crying. I’m bawling. Because I’m like and I’m mad. Why am I crying over this? I hadn’t cried over this. I didn’t even cry when it happened. You get what I’m saying?

I was so confused and I was angry. Like, why am I crying? He don’t deserve my tears, you know. And God, and God, He’s so, uh, you know, He’s so subtle when you need it. Like, He know how to correct you and love you all at the same time. And He was like, who is your puppet master? And I was like, what? And He began to show me.

How that incident, those things that happened when I was a kid, were controlling my movement, my response, and my puppet master, were the things in my past, and how they were controlling how I saw things, and how I heard things, and how people heard me, and how people saw me, because you’ve got to think about a puppet master, right, they’re above here, and it’s strings operating how they’re going to move in your life, so, People saying, well, how can this relate to my, my child’s learning disability?

Well, life told me statistics that I was slower than everybody else, that I didn’t comprehend how everybody else comprehended that I probably wasn’t going to go to college because I was not as smart as everybody. So, there those strings go. And they telling me how I’m supposed to act, and they’re telling me that I’m slow, and they’re, I mean, back in the day, they had a song, because SLD, they used to say, man, slow learning dummies.

Oh, yeah, they used to take us, we had to go to the huts, you know, they had the little special classrooms, you had to go to, and it’s like, again, lying.

And they knew exactly what people would think about it. You was the one on the short little buses, right? Like, oh, you had the white top on the bus. So, it identified you early. And so that thing, those identifying marks, became your puppet master. So, they controlled how you responded, because if you keep telling me that I’m angry, then guess what I’m going to be?

I’m going to be angry. If you keep telling me that I’m slow, and I don’t understand something, then I’m going to connect to that, because that’s what you keep telling me, and that’s going to control how I do things. And so, when God asked me who’s my puppet master, it wasn’t just him, that situation with the guy, it was life.

And I started seeing how, wait a minute, this stuff has been controlling me for so long that people forget that it’s being controlled from up here, right? And so I had to be free. I wanted to be free. And the question that God asked me next after that was, will I allow him to control me, the gentleman from the grave?

And I was like, because again, some of us are so angry and bitter and hurt by people who are dead. And you still mad at these people. You still angry. They still controlling you from the grave. You still mad at the teacher who told you, you ain’t going to never be nobody. The lady, the man is dead and gone. Or how about they done moved on, but you still letting them control you.

Their words carry you. And their words were your puppet master, the strings. And it’s just like how long? And without realizing it, even as parents, you want to be careful not to contribute to the strings that life has already given your kids. You want to be careful how you think You want to be careful how quick you are to receive their disability and use it as a justification when they do certain things because you can’t be afraid to correct the behavior like yeah I’ve seen kids that have a lot of mental issues, but I’ve seen parents cave into the emotional aspects of the issue.

So, now a kid’s just doing it because they know the parents ain’t going to say nothing, the parents going to keep using that as an excuse. So, this kid can do what this kid does. But like, I know somebody, cause my cousins in like a rehab, not rehab, she’s in a group home for mentally developed, you know, disabled adults.

And one of her roommates has PICA, you know, so, she just eat whatever. Now, when she’s with her mom, she eat whatever she want to eat. Okay. But when she’s at the facility with the lady who is showing her love and discipline, she don’t eat nothing. Why is that? Because she learned how to manipulate the parent through the emotions of this, my kid, I’m just, I don’t want him to get upset.

But how she know the difference not to do it when she’s not, when she’s at the facility, when she’s at the group home, or when she’s with her mom, which is not often. She goes back into that behavior because again, we learn certain things. We’re smart regardless of what they say mentally what they can retain and all this other kind of stuff They were saying I couldn’t process information. But nobody could explain how I could like you could be talking to me and I would be I was able to give you an answer to some little question I didn’t even understand, but I’m slow.

I think they were a little bit wrong because I don’t think we’d be having this conversation if they were right.

Absolutely. But you get what I’m saying? Like be careful of the puppet master.

Well, I’m looking at our time. Listeners, I had a whole list of questions. I threw them all out as soon as we started talking.

Cause we do, we were just going to talk. So, I’m hoping you’re enjoying our conversation because, because I’m enjoying it.

Me too.

This season, what I’ve been doing for each of my guests is I’ve been giving them a statement to, to repeat after me and then finish as a way of passing on some advice to our parents.

So, if you’re up for it, I’ve got three, I was going to read for you.

I’m up for it.

Some are a little bit longer. So, if I need to repeat it again, tell me, or if you need to reword it a little bit, that’s fine. So, it’s an open-ended statement, you’ll hear the first of it and then it kind of leaves you hanging.

So, you’re just going to finish. Whatever you want to say afterward is the right answer. So, the first one is, “One powerful way to help a child with a disability overcome perceived limitations is to …”

Not perpetuate the limitations, show them, not just say it. But show them, like show them examples. Like, let’s say they don’t have legs, you know what I’m saying?

Or something happened and they want to be a track star. Don’t perpetuate the fact that they don’t want to have legs. Cause I see track stars without legs. Right? So, if there’s a wheel and a mindset. There is a way. So, don’t help perpetuate the limitations. And sometimes as parents, we are afraid to let them try, you know, because we know the world can be cruel.

But see, the Bible tells you to come to God with childlike faith because children are taught certain fears and limitations based off their surroundings.

All right. I like the example too. That’s. It’s always nice to have a visual to go with it. So, number two, “When facing setbacks on the special needs journey, the most effective way for parents to build strength in their child is to…”

Not look at it as a setback, but look at it as a learning experience.

Why it’s gotta be a setback. It’s just like when you play a video game, right? You know how you get so far in a video game that even after you die, you don’t necessarily have to start back from the beginning. You just start back from where you was at. So, even if they have to start back at the beginning, it’s still not a setback.

It’s a learning process. So, you’re going to learn a little bit more. Like, let’s say you plan a game. You ain’t never played this game before. That’s how you got to look at a child with disability. They doing something that either they said they couldn’t do or they’ve never done it before. So, it’s not a setback.

It’s a lesson. What are we learning in this lesson? Well, we know that we can’t go to the left cause that’s a wall. We’re going to run into the wall. So, how about this? This time we’re going to go to the right. Because we ain’t never been to the right before. So, instead of looking at it, again, that’s the same with like looking at limitations.

Instead of looking at it as a setback, train yourself to say this is a learning opportunity. This is a chance for me to show my child another way to look at something.

Nice. You are full of wisdom. I like these. So. Alright, so, see if I can stump you on this one.

Okay.

“To foster a strong, independent mindset in a child with a disability, the most important thing parents can do when collaborating with professionals is to…”

Always be an advocate for your child.

Because, just because they’re the professionals. We tend to trust them to advocate the way only a parent is going to advocate. I want to foster my child’s creativity. I don’t want to hinder it. So, even if I have to adjust my own lifestyle to be in a, to where my child can foster and do what it needs to do, then that’s what I’ll do.

I won’t make excuses and be like, well, the school is not doing this or the professional is not doing that. That’s not their job. Even though that’s what they went to school for, it’s really yours because I want to cultivate, you know what I’m saying? I want my child to foster their independence and know that regardless of what life may say, life told me I was going to have to have a trade.

Life told me I was going to do the same thing my mama did, that I was going to be. Again, statistics say So, these were professionals that Baby you’re going to have a baby probably at 14 or 13 because your mama had you. That’s statistics and based on that, based on what that study said, they were not lying.

But I didn’t get pregnant with my first child until I was 27 years old. You don’t have to, because they’re professionals. You don’t have to be in agreement when a professional speak to me concerning me or any of my children, right? What I’m gonna do is take their advice and be like, okay Thank you, cuz it’s not a lie. You get what I’m saying?

Like it don’t make it a lie. That’s their truth Now, how can I combat that? They said that you know again the professional say I ain’t have nothing to worry about this tumor is slow growing. We’ll see you in 40 years, which meant I’ll have been 80 by the time they saw me You Yeah, no, that’s not what happened.

And look where I’m at now. But through that, you get what I’m saying? So, don’t let the word, because they are professional, because they went to school for this, because they got a diploma, that’s not what I’m saying, a degree, behind their name, they got some letters there, that they know what’s best for your child.

Because even in their truth, they’re still setting limitations on what your child can do.

Before we close out, um, you mentioned your book. So, is your book on Amazon? Where can I get it?

It’s on Amazon. It’s on Barnes and Noble, the online store. Um, and it’s Embrace Your UGLY. You’ll know, you’ll see.

So, this is what it looks like Embrace Your UGLY.

And we can put the link to the Amazon one in the show notes too. So, listeners, if you want to. To be able to get straight to it, we’ll, we’ll, we’ll have it on the web page and on the show notes. And then, um, do you have any projects coming up? Anything you’re working on that you want to share?

Yes, absolutely. Man, I, you know what? I wish I had my flyers, but you’ll have information so they can have a link. Um, we’re having a mental health conference in Leesburg, Florida, July 20th at 2 p. m. And we’re going to have licensed therapists, um, professionals, a dean of students, and it’s a mental health workshop for the family.

So, it’s called Family Affair Mental Health Empowerment Conference. Because a lot of times what happens in the mental health, it’s almost kind of like, If it’s the child, a lot of times the dad thinks or the mother are handling it, right? Or if it’s a parent, then it’s always like it’s shifted. But what people have to understand is mental health is a family issue.

You can’t single out that one person and say, well, this person is going to take care of it. Because we all have to come together. As a village and help foster what’s really going on. And a lot of times what we’re seeing now is especially men, right? They’re not going to the conferences, right? The women go and the kids may go, but the men are not going.

Who’s speaking to them? Because in this world today, that I said all the time, and I mean what I say, they keep demonizing men. They keep putting them down. Either they’re too aggressive or they’re not aggressive enough. And it’s like, well, what you want the man to do? You know what I mean? You know what I’m saying?

He can’t even be his self. He can’t even walk in his authority, his God-given authority. Cause you telling him he’s too manly or you telling him he not manly enough. And so again, we don’t think of men having mental issues, you know what I’m saying? Like mental breakdown and even children trying to articulate and then women.

Because then women have been told you’re supposed to be a strong person. Like me being a black woman, you know, they always say black women got to be strong. Well, who said it? Like who came up with that rule? Like, why do they got to always say that? Like, wait a minute. Like, who said this? Like, who, who wrote this down?

Because I need to go tell them that. They need to stop lying. Like, no man. Like, wait a minute, like we can’t ask for help and this example I use all the time. When people say silly stuff like that, I gotta get this done. Okay, you say you’re a believer, you say you’re a Christian. Now, if this was meant for us to do this stuff all by ourselves, then why did Jesus give him 12 disciples?

If you don’t need nobody else, to help you. Why he out here picking up 12 people, messing with their lives. You get what I’m saying? If he can’t do it by himself. And his daddy created the universe. And his dad, even in the beginning, God was like, it’s not good for man to be alone. But yet you out here to convince yourself that you can’t ask for help, that people ain’t going to be supporting you.

Well, look what Judas did to Jesus. It was all a part of the assignment. Look at Peter, did not him, they was close. They was like bosom buddies, they was in that thing. And Peter was like, bruh, I don’t even know him. So, again, I think we make up stuff in our head to be like, if that’s the case, if you don’t need nobody, then God wouldn’t use any of us.

Because he don’t need any of us. Technically, he is God. But he uses our life as example. And so, if he needed to use us, If Jesus couldn’t do it by himself, why you got to do it by yourself? That’s why you learn about how to break down, because you’re trying to do more than Jesus was doing. He didn’t even try to do it by himself.

Well, thank you for sharing this. I have had a blast with this. I hate what you’ve had to go through, but I love who you are today. In spite of it, because of it, however you want to look at that, you are who you’re supposed to be today. And I appreciate you being here today, this moment in time, and sharing this with my audience.

And I speak for all of them. Thank you for being so open and honest today too.

And thank you for having me. Like, it’s always an honor. You know, we overcome by the words of our testimony. If more people testify, that’s where the strength comes from. Because people realize that they’re not by themselves.

You know, like, that’s a good feeling to know that it’s not just me. I’m one of the only person out there struggling. You know what I’m saying? It’s not just me. And that’s why we got to stop being so secretive. You don’t have to tell everybody everything. But there are times, there are strengths when you release your words.

If you enjoyed this episode and want to hear more about parenting special needs children, don’t forget to hit the subscribe button and leave a review to let us know what you think. I’ll include the link to Letitia’s book Embrace Your Ugly and her other contact links in the show notes so be sure to check those out too.

I hope you learned some practical tips on advocating for a child with special needs. Thanks for joining me today. I’ll see you next week for another episode of the Water Prairie Chronicles.

The post 96. Is Your Child’s Potential Being Limited? How Advocating for a Child With Special Needs Makes a Difference! appeared first on Water Prairie.

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In this powerful interview, Jason, a father who tragically lost his 15-year-old son, shares his story of resilience and the unexpected path grief led him on. He sheds light on the challenges men often face when dealing with loss and the importance of open communication. Inspired by his son, Zachary, Jason created “Letters to Zachary,” a Facebook page offering support and a safe space for others navigating the difficult terrain of grief. This conversation is a must-watch for anyone seeking hope, understanding, and a sense of community after loss.

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Jason Tuttle, a dedicated husband and father, navigates the complexities of raising two special needs children with rare conditions. In 2022, he faced the unimaginable loss of his 15-year-old son, Zachary. This experience ignited a passion to help others. Jason advocates for grieving fathers and finds solace in “Letters to Zachary,” his Facebook support page for those facing loss. Through his story, he offers hope and connection to a community facing similar challenges.

Full Transcript of Interview:

Tonya: Jason, welcome to Water Prairie.

Jason: Thank you so much for having me.

Jason’s a, he’s a stay-at-home dad. We, we said that earlier in the intro and you have two, two, two children. Is that correct?

I do. I have two children. Uh, um, my son would have been 17 or 18 this year. My daughter’s 15.

Okay. So just, so teenage, teenage years here, let’s go back to early in, in life. Can you share a little bit about what it was like when they were young being a stay at home dad caring for multiple children with special needs?

Well, um, I will say in the beginning before either of my kids were born, it was kind of a doc, if you will, just, uh, we had no early warning or anything telling us either of our kids would have any issues.

Uh, 20 appointment where, you know, you find out the sex of the child. And even at that point, before we found out the sex of the child of our son, we had no reason to believe there are any issues. And then, you know, I’m a planner. So I wanted to know the sex of my child. My wife did not because, you know, that’s the last great surprise we had in life.

And so we playfully went back and forth and it was the ultrasound tech that goes. Well, would you like to know the sex of the child? And we played back and forth and then she goes, well, I’ve found an issue. I need to know what the sex of the child is. And so at that point we go, what’s the sex of the child.

And so she said, you’re having a boy and I come back and go, um, Well, why did you need to know the sex of the child? She said, well, because the issue I think it is, is rare in boys. It’s even rarer in girls. So I need, needed to know the sex of the child. And I said, well, can you tell me what it is? And I didn’t realize at the time, but she was just like, no, I’m sorry.

I can’t do that. I think that was more of a doctor relayed message versus a ultrasound tech relayed message. And so from that point, we went in to see perinatologists and specialists and. What it turned out to be was when my son was born, he was born with a rare condition called Eagle Barrett syndrome. Um, and the easiest way to describe it, they don’t still officially know what causes it.

They know it’s related to a kidney issue, which he only had one kidney. That one kidney was sustaining utero because fluid was backing up into it. Uh, he had an enlarged bladder. He had no abdominal muscles. Like no stomach muscles, period. And so because he didn’t have that, he didn’t have the force to be able to like cough things out.

His breathing was normal, but it was shallower. So what we found out within the first five years of his life was when he would get sick, he couldn’t cough it out and it would just sit on his lungs and it would compound and compound to where we would have taken the hospital. He’d get admitted. Well, fast forward a couple of years, uh, we start seeing a pulmonologist and I literally get all the home respiratory machines you can think of in his room.

And so from that point forward, when I would hear that specific cough that I always knew what it sounded like, I would go into my procedures of, I start with machine 4, and if none of those work after a certain number of times trying them, I’m up to the hospital. To try to get, and so ultimately that’s what led to many, many hospital stays for the first five years of his life.

So the Eagle Barrett syndrome is unto itself. On top of that, he was born with epilepsy. Uh, he had seizures. He was nonverbal. Uh, he was, even though he could walk with assistance, he was basically wheelchair-bound. He had neurological delays. So even though when he, when he passed, he was 15 years old. He functioned at about four to six years old, his entire life.

Uh, or at least, at least up until he got to that age. And so he. He had all of those issues that kind of combined to make up his total kind of picture of what he dealt with. Uh, from a parent side, we, it was his neurological that we believe was kind of the driving force of everything, uh, with his delays.

So we had him. At that point, I was working. I wasn’t necessarily a stay-at-home parent at that point. Uh, my wife and I always decided that we wanted to have another child, and after having a child with that many needs, I, you can only imagine kind of the backlash from family we got. And so about 2 years later, we had our daughter, and at least in the beginning, she was our normal child because at that point, we saw no delays, no issues, nothing.

And at about 6 months in, we had an occupational therapist come into the house, and she had an intern with her, and that intern was doing the Peabody skills assessment test. And so it was the OT that says, do you mind if she practices on your daughter while I work with your son so she can get practice on it?

I said, sure. I know what that test runs my insurance company. If y’all want to give that to me for free. And so they did. And she came back and said, what’s my professional opinion that your daughter’s delayed? Well, I can tell you at that point with everything going on, that’s not what I wanted to hear.

And I, I will admit I was kind of rude to the girl because I was, I literally told her to pack up her blank and get out of my house is what my exact words were because I was just like, I’ve got so much going on now. I can’t handle another child. Having issues. So we went to go see our doctor, doctor came back.

I think you need to make an appointment with a neurologist for your daughter. At that point, it kind of hit me. I was just like, okay, we’ll go make an appointment. Let’s spread some time out. And later on down the road, my daughter was later diagnosed with epilepsy, just like her brother. She had seizures, uh, of the six different kinds of seizures.

We’ve seen four of them in my house. She was, even though she can walk with assistance, she needs a wheelchair as well. Uh, we believe her neurological issues that she has, uh, is affecting her balance. So we don’t know if she’ll ever walk unassisted or not. Even still to this day, but she was born with epilepsy with seizure.

She was also nonverbal. She was also basically in a wheelchair. She also had severe developmental delays. So just like her brother, even though she’s now 15, almost 16, 16, she functions at about four to six years old. Even though I’m hopeful that she’ll gain some of the ground, I’m realistic and I’m realistic in the sense of We have such a delay at this point.

I don’t think she’ll ever overcome that much amount of time as much as I would love for her to, I’m more realistic about it. And I’m of the viewpoint. Well, I don’t know if she’ll recover that much time to get as normal as possible. So I need to work with what I’ve got and see what we can do with what I’ve got.

And so this all goes into, um, my career before I left was education. I taught elementary school physical education for 9 years. And so that last year I was there, I was in and out so much that I was essentially working for free. And so I eventually went up to my principal and said, look. I know what it’s going to mean if I break a contract in the school system in the middle of the year.

I said, but here’s what I’m up against. And I said, it’s got to give somewhere and it’s not going to give it home. So that means the only place left for it to give anywhere is going to be here. And I said, that’s not fair to you, the school system or the kids. I said, because I’ve got a lot of stress at the house.

Because of just everything we’re dealing with. So in the middle of that year, I resigned. And I, from that point forward, I was a stay-at-home parent for 12 years. My daily routine, whether, uh, whether he was at school or not for both of them, was I’d get them up, I’d, you know, get them dressed and change. I’d give them all their medications, depending on their health, meaning if he was sick or not, if he was kind of under the weather, I would go through all of my respiratory kind of protocol that I had with all this machinery and try to help clear him up and get him going for the day.

And I would, for my son, I would do that 3 or 4 times a day, especially when he wasn’t feeling well to kind of keep on top of it. Of the two of my kids, even though they have almost the identical issues, it was my son that was more medically fragile. My, my son was the one that spent the most time in the hospital.

My daughter in her entire life has been in the hospital twice. So my daily routine kind of coordinated around both of their care, what their doctor’s visits were, if I was in the hospital, um, um, what I was kind of doing around the house. And then after all that was done at normal life, I would then have to go into, well, what does OTPT and speech at school want me to do at home?

And I had to do 3 different things for each of those specialties times 2 kids. And so, it’s just, it was busy, um, most days. And then if I were in the hospital with my son, which every time I went, I would go with him. The moment he got admitted, I was there with him until he left. Like I literally never left the hospital.

I stayed in that room because he was nonverbal. And so when a doctor would come in, I would have 15 years worth of medical knowledge in my head that I could tell them to give them a better idea of how to treat him versus them just looking at monitors, trying to figure out how he’s feeling in the moment.

So that was kind of my, normal daily routine with my kids, uh, through, uh, through all of my son’s life and, and it’s a little less for my daughter at this point.

You described your son’s rare condition, but then you also mentioned that he would have been 18, did you say?

Yes, this year he would have been 18.

So tell me about his passing. What, what happened later?

Okay. So typically in an evening when my kids would come home, we would kind of do our routine. I’d feed them both. And then I would put my daughter to bed early about an hour before. And then my son would come with me and my wife into our bedroom to kind of have some one on one time just because I love my daughter.

But my daughter can be a lot to handle at times with. You know, she may be 15 and functioned at four to six, but she still has all the teenagery stuff that goes along with it. And so my son throughout his life has had many, what I would call a 24-hour bugs illness wise, you know, something you get, you feel like garbage for about a day.

You recover from it, you move on. So about three days before everything happened, he got home. We fed our kids and put my daughter to bed. We fed him. He ate like a horse. We brought him into our room and then right before bed, uh, like we would use an electric toothbrush from because he liked the vibration for his sensory issues on his teeth.

So my wife was brushing his teeth and honestly at the time we thought she went a little too far back. She hit his gag reflex and he threw up a little bit. And so it kind of surprised us, and I looked at him and went, Well, maybe you went a little too far back. It just caught him and made him throw up what was in his throat.

Kind of thing. Didn’t think anything about it. So at that point, we put him to bed. We think he’s going to go to sleep. We’ll get him up in the morning. You know, I’ll send him to school. And I mean, at this point, I’m still a stay-at-home parent. So that night, he’s up and down literally all night, and that’s very unusual for him.

So he’s up and down all night. The, uh, uh, he kind of crashes early in the morning. So I, I let him sleep in for a few more hours just to give him some rest, get my daughter up, send her to school, that kind of thing. And then we, uh, about eight 39 o’clock, we get them up and he’s up and. You know, I bring him out in the living room and he just doesn’t look like he’s feeling well at this point.

I’ve texted his teacher and said, cause he’s in a self-contained classroom. I said, look, son’s not feeling well, not sure what it is. Don’t know if it’s contagious. He’s not coming to school. Don’t want to spread it to your classroom. And so she’s always been really good. Thank you for thank you for keeping him home.

Let us know how things are going. Okay. So I keep them home that day. And the entire day I look at him and go, buddy, you can take a nap, but he absolutely refused. And I’m just like, buddy, you see that couch over there? I’m gonna be sitting on it. That’s all I’m gonna be doing. You’re not gonna be missing anything.

But he refused to take a nap. And so that evening we put our daughter to bed and I said, I’m gonna give you another hour of sleep. I’m gonna put you to bed the same time as your sister. Put him in bed. Don’t hear anything about it. We just think he’s exhausted. He’s crashed early. He’ll get a good night rest.

He’ll be okay in the morning. And so I put him to bed and I tell my wife, I said, well, depending on how he’s doing in the morning, I said, I may keep him home because this is. That first, it was Wednesday into Thursday. This is Thursday into Friday. I said, if I keep them home tomorrow, it’ll just go right into a holiday.

And then we’ll have all these additional days for him to recover. And I won’t have to worry about him giving something to the school. So don’t hear him all night. We think he’s fine. We get his sister ups and get her ready. Send her off to school same time, eight 39 o’clock. We go in there and he’s awake.

And he kind of looks at us. And I walk over to his left side and I notice there’s this dark green streak of something coming out of his mouth. And in all my medical knowledge, I go, the only thing I know that’s dark green that can come out of your body is bile. And why is bile coming out of his mouth? So I go to pick it like scoop him up to pick him up and he’s really floppy like he can’t hold himself up.

That doesn’t really strike me just because it’s happened before when he’s gotten really sick when we’ve had to go to the hospital and he recovered in the hospital. Don’t think much about it. So I get him out in the living room. I kind of go through my checklist of what I need to do. He’s still kind of lethargic, kind of floppy and I, and I feel his midsection and his midsection is like concrete cinder block rock hard.

And at this point, I don’t know what this is. And so it was just a gut hunch. I went, I looked at my wife and I said, I’m going to take him to the hospital. Said something’s not right. And I don’t know what it is. I said, it’s not respiratory-related. I said, his midsection concerns me. I’m going to take him up.

So I get him in his wheelchair. I get him in the van. You know, I pull out of the driveway. I call my mother who, who watched him for a while when he was younger and said, taking Zach up to the hospital. Here’s what’s going on. I’m not sure what’s going on. You know, I literally told her, I said, I think he might be admitted.

I said, I said, I think he’ll be for a couple of days. And then we should come home was what my comment was. Well, I live on the Southwest side of Atlanta and the hospital for our children’s hospitals on the North side of Atlanta, it’s approximately 60 miles away is what it is. So I get on the interstate and I’m doing like 90.

Because at this point, I don’t know what’s going on. He looks like he’s fading in and out. He looks like he’s trying to like go to sleep and like with a concussion, you don’t want someone to fall asleep right after they’ve had a concussion. So this whole time I’m going, buddy, stay with me. Stay with me, you know, stay awake, stay awake kind of thing.

And so I get through Atlanta and right before my exit to get off, to get to the children’s hospital on the board goes. Wreck all lanes blocked. And so I, I get up there and in my head, I’m kind of freaking out a little bit. So we’re just crawling and we crawl for about 15 minutes and I finally get up to the front.

And I don’t know if that road crew was signaling me through, but he didn’t know what was going on in my van. And I floored it to get through there. And I could see him almost swearing at me behind me and in my rear view mirror. So I get up to the hospital. I get him out of the van to put him in his wheelchair.

And he’s really floppy more so than what I’ve been used to. I get him up to the E. R. and I skipped the line to like go up to the desk and so I can see a security guard coming to me as if to say, well, you know, there’s a line there. You need to get in line. And right before he can say something to me, I go, I don’t think he’s breathing.

I need some help. At that point. He looks at the nurse and snaps his fingers and says something to her. And we literally full speed run to the back to an E. R. trauma room. So we get in that E. R. trauma room because I’ve been in the hospital so much. I instinctively undo his chair. I pick him up. I put him on the table and I back off as if as if to go.

I want to be in the room while you’re working, but I don’t want to be in your way. Because I didn’t want him kicking me out and him being nonverbal, me not being able to tell them what was going on. So there was another ER trauma room right next to it with the doors open and nothing was in there. I backed out in there.

We get in there, I put him on the gurney or the table that’s there, 30 people come out of just nowhere. And they’re on all sides of them. They immediately cut his clothes off. They put a line in him to try to get antibiotics in them. They immediately start chest compressions on him. And I’m sitting here watching this.

The head ER doc comes to me and goes to the best of your recollection down to the minute. How long has he been this way? I said, well, I came from this county. I said he was this way about 10 minutes before. So I said about 40 minutes plus or minus about 2 or 3 minutes for however long it took me to get up in here in here.

Okay. She goes over there. She barks orders to him. They all kind of start doing their thing and she comes back to me and she goes, explain to me why you brought him up here. And so I tell her everything that’s going on and what my background is with him and what his issues are and she goes, okay, she goes over there and starts just barking orders at him and what they need to do and how they need to do it almost like a precision army.

So, they do that and at this point, they’ve been doing CPR on and off for about 10 minutes. And they then get the paddles that, you know, traditionally it’s the, the, where they get the plastic, the, the metal paddles and I put them together and put the gel on them and they rub them together and they go clear and they do that.

Well, nowadays, it’s. It’s a sticker they put over the heart and on the side. And it’s, it’s a machine they push a button on. So they go over there, they put them on. I hear him say that. And he, like the medical drama, he literally raises off the table. Like his body goes and does that. Now, I have watched these oxygen monitors for years.

And so as they do that, I watched it and I can, I can see his oxygen rate and his breathing rate and his pulse and all that before they do it. And right after they do it, it literally goes. Boop and goes right back to what it was doing and just the minimal things on there. And so at that point in my brain, I go, he’s not coming back.

Now, mind you, at that point, they still do CPR and, uh, and shock him four more times in the next 45 minutes. So they do this for a continuous hour to try to save him. And so they finally go through everything and the yard head doc comes to me and goes. You know, I’m sorry to tell you and she pronounces him and I look at her and go, I said, you know, I was delayed 20 minutes.

I was delayed 20 minutes. I was, I was focused. I was fixated on it. She goes. She goes, sir, you could have been delayed an hour or longer and the end result would have probably been the same result. And I said, I said, I’m at a loss of what this is. I said, can you tell me what this is? I said, because in all the things I’ve done, I don’t recognize it.

And she goes, she said, from what I can tell, she said, it looks like sepsis. She said, it looks like you got an infection somewhere. And she goes, unfortunately in the hospital, if we don’t catch it fast enough, she said the fatality rate is like 95%. She said it’s ridiculously high. And she goes, she goes, so apparently what happened was, was he got sepsis somewhere, it got into his bloodstream and it went downhill from there.

So on the certificate, it says cardiac arrest due to sepsis and sepsis is what it, however, based on what I learned, heard in there as they were doing it. And what I felt that day, I will go to my grave saying, I believe it was gastro aneurytis. And I never caught it because when I went back to look on like Mayo clinic.

com and webmd. com, all of them said, if you see these symptoms go to the ER immediately, apparently at some point that happened and I never caught it. And it just went too far. So that’s kind of how that day went. Um, you know, she pronounced them. I understandably went over and had a minute to myself. And then I came back to the care people that were there that were trying to console me and tell me what the next steps were.

And I’ll never forget it. She, she comes over to me and I said, this is going to sound harsh. I said, but I don’t mean for it to be, but as a special needs parent, as a man, I have to compartmentalize right now. And I need to know answers. And she goes, okay, what do you need to know? I said, what happens from this point?

Are you going to take him to the morgue? If you take him to the morgue, what’s the coroner going to do? Is he going to do an autopsy? If he does, what’s he going to look for? And how long is that going to take? If he doesn’t do an autopsy, what’s his justification for not doing an autopsy? Once you’re done with all that and everything’s complete, who do I need to contact to get, uh, the funeral home to come up and get him and bring him home.

And I listed like nine things. And she did. She literally took a step back and she goes, well, I’m gonna go talk to the coroner and I’ll see what he says. Well, about 10 minutes later, she comes back and she goes coroners decide. He’s not going to do an autopsy. And I didn’t mean to in the moment, but I go, why, why is he not going to do an autopsy?

I want to know your protocol as to why he would or would not do an autopsy on my son. And she goes, and she steps back again. And she goes, typically in the children’s hospital, she goes, the four reasons why we would do an autopsy is if it was criminally related, drug-related, abuse related, or if your son was perfectly healthy and all of a sudden he died.

Is the four reasons that she said, because your son had such a big medical history, the coroner has decided he’s just going to relay it to something related to his medical issues. And I said, okay, I’m fine with that answer. And so, you know, after that we went into the whole kind of funeral home process and all that kind of stuff.

Wow. Well, even have the presence of mind of all those questions, you know, but I’m, but I’m a lot like that too. Whenever I face something that is beyond what I expected, I get really zoned in on the details and the emotional reaction will come later. It’s yeah, this is, this is crisis mood. What do we do in this moment in time?

And, and as a special needs parent, you’ve had to do that throughout your children’s lives, especially with your son to get him the care that, that, that he had needed during that time. So I don’t, I mean, some, some listening who may not understand that, I think that is a typical process for some personalities that to be able to block it all out and just focus on what.

It is. And, and I would, I would tell people that didn’t understand. Uh, I was always kind of in what I call go mode, even if I was relaxed. I still always had an ear to what was going on. And it’s one of the reasons why I’ve had insomnia issues ever since he was born, because I had a couple of times in his life that I literally in the monitor, heard something as I was asleep, I bolted up, I got him out of bed and I, and I drove like a madman to the hospital in the middle of the night, uh, on a couple of occasions.

And from those points forward, I was always in go mode. It was 24, seven, three 65. It did not matter. So that’s just kind of how I live for. Let’s see. Uh, it basically started right before, uh, uh, in utero. So 16 years. And I mean, I still have insomnia issues. I mean, I, I can’t get away from them.

Do you, have you ever, um, you and your wife, have you ever plugged in any type of respite service?

We, we get asked that all the time. And honestly, it comes down to. I know that I have to expand my circle of trust, and with the fact that my son had so many combined issues and a rare condition that literally nobody in this area or even Atlanta really knew about, I had a really hard time leaving him with someone that didn’t have the knowledge that I did.

Because if something were to go sideways and they didn’t know it as, as I did. You know, I’ve told people several times I wouldn’t have been able to live with myself. And so for the longest time, and even still now with his sister, I’m just like, for whatever reason, I’m meant to be on this journey, even if it, I mean, it’s going, it’s going to be a bleak way to look at it and I’m okay with it.

But if it means I don’t go on vacation or I don’t do some of the things normal people do, because I’m taking care of my son and making sure his quality of life is as good as it can be, as well as his sister, then. That’s my lot in life. I mean, it’s a hard life. I won’t make any bones about it, but that’s just my lot in life.

So you had a really close relationship with your son in the hospital. You had that focus moment. When did the grief hit you?

Um, well, when people ask me about it, there’ve been a lot of tough moments, but the absolute toughest moment I had was Well, after he had been pronounced, I called my, his mother and I’ll never forget the sound of the scream she made when she heard it.

she didn’t see that coming.

None of us did.

Yeah. And

she was working for, she was working from home. And so when I told her and she calmed down for a second, I said, cause her parents live close to us. I said, you don’t need to drive up your call. Your parents have them drive. You tell them what’s going on.

The absolute hardest thing I’ve ever had to do is when we decided to go home, I had to get his empty wheelchair. I had to pick up all of his cutoff clothes, put them on his wheelchair and walk through that hospital down to the, uh, to the parking garage. Put all that in the van and drive 60 miles home without him in it.

And so that was difficult. And then even though my daughter has delays, she was at school. He didn’t know any of this had happened. In fact, she always knew that when I took him, I stayed with him. When I came home, he came with me. So when she came home and he was not there, she may not have been able to talk, but I could see it on her face.

She’s just like, where is Zachary? Why is he not home? And so, so we had that and like, you can see behind me where it says Zach, that’s his wheelchair that has remained in that spot since the, since the day he passed away, I have not moved it. And so when. When I brought that chair in here, it’s like a ton of bricks hit me at that point and I just lost it because I’d been far enough removed from kind of the event itself.

Adrenaline had dropped and so I came in here and I just, it, it came flowing out. And so those are probably the three hardest moments I had.

How have you dealt with that grief?

Um, like everybody else in the beginning, it was really raw. It was really. You know, traditionally, as men, our first response is anger.

I mean, that’s just how men are kind of built. Before he passed away, I was going to therapy for some other issues, and I’m a big proponent of therapy. Even if, you know, even And at that point, right before he passed, we had gone through what I felt like was a therapy season. And I was telling my therapist, I said, you know, I think we’ve gone through this.

I think I’m going to hold off for a little while. If something should come up, I’ll reschedule an appointment with you. Okay, fine. And so when this happened, I hadn’t stopped yet and I said, I need to make an appointment as soon as possible. And so we got in there and I explained everything to her and then a couple of sessions and she goes.

Have you ever thought about journaling? Ironically, now I went, Eh, I don’t know if I’m really good at writing. I don’t know if this is what I really want to do. And so that idea sat on my side table for probably six months. I didn’t touch it, didn’t think about it, nothing. And then I began to start writing, like, word documents in letter form to my son.

And I kept it personal. And so from there evolved into, I found my 1st Facebook grief group that was specifically dedicated to parents that had lost special needs children. And so I got in there, got to know the admin really well. In fact, I moderated it for a little while. And so I said, do you mind if I post some of my journal entries?

And she’s just like, no, sure. We, we don’t typically get a whole lot of men doing that. Sure. We’d love to see it. And so I put, it was probably several weeks in because at that point I was writing literally every day. And so it was several weeks in and I posted a long one and I’m, and I prefaced it with, I don’t sugarcoat anything.

This is very raw. It’s very open. It’s very transparent. So if you can’t handle very raw emotions, scroll on by. So I did, and no more than I posted, I got a massive response from a good number of the women that were in there. I got responses like, this is the first time anybody has written something that explains exactly how I feel and that which I’ve never told anybody.

And I said, well, I appreciate us that these words are inspired by my son and just kind of how I’m feeling in the moment. And so I continued to post periodically and every time I would get this massive response. You know, I had one woman said, this speaks to my soul. And I’m just like, well, I appreciate that.

I don’t know if it’s that good, but I appreciate the comments. So, um, you know, I had people say, are you going to write a book? And at that point I didn’t think I had enough material, although I do now. And someone said, well, have you thought about just doing a Facebook page? I said, huh, well, that’s not a bad idea.

And so I started doing that. And I mean, in the beginning I had probably 10 or 12 followers, kind of your standard. And so somewhere in there. I just started reaching out to all these different people that were big names in the grief community. I said, you know, my name is so and so this is my page. I’d like to try to get a following.

This is kind of the niche I’m trying to get into. Do you have any tips or tricks of being online of things I can do to kind of help build my following or what would appeal to the masses? And so I had a lot of them come back. Oh, sure. That’s fine. You know, A, B and C. Here’s what you need to do. If you’re going to, if you’re going to write a book, you need to do this.

If you’re going to do this, you’re going to need to do that. And so they were very instrumental at me building the following I have. And so in seven months, since I’ve started, um, I’m now at almost 900, uh, regular followers. Um, I am, I have representation in 44 U. S. states and 18 countries. Um, I am on all forms of social media.

Um, I have done, including this one, I’ve done five or six podcasts on grief. I’ve done multiple grief groom, uh, grief Zoom sessions. Uh, I’m collaborating on a grief YouTube series with a gentleman. Um, I mean, it’s literally blown up and so honestly, my end game is I’m wanting to do a career change in something in the grief world.

What I don’t know yet. I’m thinking I want to go into public speaking, but I don’t quite know how to get my foot in the door yet with it. Uh, so I’d like to do that. I’m still considering binding all my stuff together and making a book.

I think that’s, that’s a great idea. Yeah.

Uh, just kind of from my perspective kind of thing, I mean, with my ADD brain, there’s about a hundred ideas roaming around in my brain.

You mentioned the Facebook group that you were in, have you found any other support networks that have helped you in your journey?

Yeah. A lot of individuals, um, uh, let’s see, there’s a gentleman by the name of Tony Lynch who’s on Facebook and, uh, I actually found him on LinkedIn. He specifically does grief groups specifically and only for men.

And so, and his comment was, the reason why I only do men is because I’ve learned that when men are in a group setting, if women are a part of it, they won’t open up near as much if it’s just all men. And he said, I do that for a specific reason. And so I said, I can see that I can, I can understand that justification.

So there’s Tony Lynch. There’s, um, uh, there’s another lady on LinkedIn by the name of Portia Booker that I just talked to that I might be collaborating with. There’s authors by the name of Donna Ashbrook that does a lot of poetry, grief related. She’s based out of Scotland. There’s Michelle DeVille, who’s based out of Minnesota.

There’s Liz Newman, who does a lot of poetry. There’s Gary Sturgis, who’s up in the Massachusetts area that does a lot of grief counseling. Um, there’s a ton of people that are kind of in that grief world, not including just the community I’ve met through Facebook groups and zoom sessions and, you know, doing podcasts and that kind of stuff.

So if our listeners want to connect with any of these, can they connect with you and, and get those resources through, through your,

um, Uh, I don’t have them specifically linked on my page, but, um, I can certainly let them know who they are. I mean, I’ve, I’ve used them so much that they’re on the tip of my brain always.

But I’m going to change gears here for a bit. The, um. My listeners that have been with us so far for Season 3 have heard this before, but for anyone new, I kind of thought I’d spell it out. I’m asking each of my guests to give you some advice in kind of a different way. So I’m going to read some open ended statements and I’m going to have Jason repeat them and finish them for us.

It’s just kind of a way to, to pass on some of his wisdom to those that are listening. And, um, so I have four of them for you, Jason. The first one is, a piece of advice I’d offer to other parents of children with rare conditions is.

A piece of advice I would offer to other parents with a child with rare conditions is, I would say to them, dealing with a child with a rare condition would be like someone deciding that they want to start mountain climbing, and the first mountain they want to do is Mount Everest.

Um, I would say from the base of the mountain, it looks very daunting. It looks like it’s impossible. It looks like there’s no way I’m ever gonna get to the top and, you know, plant my flag, so to speak. But the reality is, as you will, even the most expert of climber that can climb that mountain does it one step at a time.

They all do it the same. They do it in chunks. And in fact, if you know anything about people that climb that mountain, they go a certain distance and then they stop at a base camp for that night. So they give themselves a break. So just like in rare needs or common special needs, you can do it for a while and then give yourself a break.

Because as I’ve learned, and many people in the viewing audience knows, it’s not always bad moments. You’re going to have relief moments, so to speak, in this journey. So when you have those, give yourself a break so that when the next time to climb comes, you’re ready for it. Because I’ve had many times in my life where life was just crazy.

And I didn’t know what to do and I was stressed out. And so if you do that, you can then move up to the next base camp and then the next base camp, and then you’ll get to a certain point where there’s no more base camps and you’ve got to just get to the top of the mountain. And so, and at that point you will have learned enough in your journey.

To be able to get up there safely and get back. So I’m as simplistic as it is, I would say this journey is like a mountain. You can, you can overcome it, but it just takes, takes one step at a time.

Nice. I like that. I like the analogy for it. Okay. So next one we have here is the most challenging aspect of being a stay at home dad to children with special needs is

the most challenging aspect of being a stay at home dad for children with special needs is.

Well, to me, as a man, it’s two things. Um, the first thing that I ran across outside of my kids was just the stereotypes I was coming across. Now, it, it wasn’t necessarily a bad thing, but it was more the fact that when I dealt with the female teachers and the female doctors or even male doctors on that end, they, they’re so in tune to be talking to mothers that they did not know how to handle me.

And especially me, who I’m very upfront, I’m very open and honest. I’ve told, I’ve told the doctor to literally to their face. What am I paying you for? I can Google what you know. Why are you stringing me along? That’s how open I am with doctors. And so like teachers and all that initially that didn’t know how to handle the fact that they had to talk about all this information to a father versus a mother.

Maybe they thought I was going to jump down their throat because, you know, a man and how a man reacts when I wasn’t. Now, as long as they were polite about it, I was fine about it. It was when they started giving me information. I didn’t think it was right. I’d go wait a minute. So, you know, dealing with that.

And then the other challenge would be dealing with the, my mental health, dealing with all of their issues and more so on the stress frustration level of it. Just because I went through many times where I’d have nothing and then it would all hit at once and I’d have four or five things all at once hit me and I would have to make, like when my son got really sick, there were times I would have to make split second decisions.

I’m going to take them to the hospital, that kind of thing. So my challenge was just kind of the mental health aspect of it, trying to be as best as I could so that when things came up, I could be as best as I could for them.

Yeah. Right. So the last one may be a little surprising for you, but I wanted to see, see what you would say on this one. One surprising way grief has changed me for the better is.

One surprising way that grief has changed me for the better is. Um, you know, anytime you go through a major life change like this, it changes your perspective and it has certainly changed my perspective, uh, towards just everyday life things that I originally thought were problems are now inconveniences. Things that, things that used to bother me don’t bother me as much anymore.

Now, granted on the other side of that, there are some things just because of dealing with grief, things that never used to frustrate me, frustrate me to no end. So, I mean, there’s a balance there, but you know, when I go out in public and I hear other parents just in passing complain about some things that I think are inconveniences, I sit back and think in my head.

I’m glad I’m no longer that way because that’s really an inconvenience. It’s more the fact that that parent doesn’t want to do it versus just sucking up, sucking it up and doing it. So it’s, it’s just, it’s given me a perspective change is what it’s done.

That’s, that’s what I was thinking when you were saying that it’s, it’s a matter of perspective, you know, and, and I think a lot of life experiences are like that.

We, and as special needs parents, we have to redirect our perspective constantly. It’s, you know, it starts from day one or for you before day one, even when you got that first potential diagnosis, you were already shifting at that point. And, and no matter what. issues our children may face, all of our parents who are listening right now can understand that, that shift in perspective that we have to go through.

Um, you know, we change our, our vision of having our child be a little league player that changes sometimes at day one, sometimes at day six, sometimes at, at 12 years of age, but that may not be the path that our child can take. It was what we thought they might do, but we had to change that mindset because that’s not who our child is.

You know, we’re my, my kids are in their early twenties now, we’re still making those shifts because they’re finding their way. And it’s not my way. It’s not what I had out for them. It’s what their path is. And so, um, so I, I think that that perspective, um, it would make complete sense that given what you’ve gone through.

Like you’re saying those, we, we, we call them for first world problems. A lot of times, you know, they’re really, it’s, it’s, it’s not even an inconvenience. If, if you think of it that way, it’s just what you have to do. Just, just go and do it. But for the next person, it’s the biggest crisis in their life.

They’ve never, somehow they’ve been sheltered and never faced anything bigger than, than not having the appointment go right. Or, or I have to change the, the, the, the schedule for something. I appreciate you sharing all of those answers. I know for years, they were, they were very different. Usually my questions are all kind of the same one with it, but I wanted to touch on a lot of what we had talked about and, um, and I appreciate you, you’re given that, that advice.

I think our listeners will get some benefit from that too. Now I want to. Talk just a minute before we close about your grief page. You, you shared with me earlier that you wanted to share the page with the world. Tell me what kind of support that it offers and how our listeners can find it.

Okay. So just as an evolution through my grief, uh, I decided to start journaling and then I eventually got to the point I wanted to share it and so I decided to make a page called letters to Zachary and the basic premise of premise of it is the idea that in my journaling, I’m writing my son who’s passed away in letter form telling him what I’m going through how I’m feeling. Either because of his passing or, or because he’s not here or what my day is like while dealing with grief, something related to him and grief.

Just to get my emotions out because I’ve learned in my 47 years of life that if I hold it in, it’s going to eat me alive. And so once I can get it out, it may still bother me, but not to the extent it would be if I never got it out at all. And so initially the page was designed because I was getting frustrated in some of the Facebook groups I was coming across.

So few men that were in my position. And so I, I did it for men. However, since then I have opened it up to women, mothers, fathers, parents, siblings, grandparents, whoever’s grieving the loss of a loved one. And. I’ve even kind of recently catered it to women that want to come in the, because I commonly get a comment of, well, my husband or my significant others not opening up, what do I need to do to get them to open up?

And so I’ve opened it up a little more to women to say, if you want those answers, come to me, and I will give you my best. Answers for what I think you need to do to help them feel more comfortable to open up. on a regular basis. So I’m, I’m here to help people in the grieving process, whether brand new or down the road.

I’m here to help spouses and, and, and people around those grieving understand kind of what they’re going through and what they need to do to kind of help them along to, especially if it’s a man or someone that doesn’t really open up what they need to do to kind of break that ice to get them to open up.

Uh, as well as, you know, I, I have on the page, I’ve got, I take other people’s work that’s in there and share it. And I mean, I tag them in it and I kind of write my own commentary to what they’ve written to kind of give my own spin on it. So to have their work there and then mine as a man’s viewpoint spin on what they’ve written.

And so I’ve also created memes for there and, um, you know, I don’t necessarily have it as much on Facebook, but I even do kind of the video TikToks on TikTok that are short kind of videos for similar stuff.

So I was, while you were explaining the page, I was, I was looking at it and I wanted to share a review that I saw and it was just the first one that popped up, um, just so our listeners can get an idea of how it’s already helping others. And this is from, um, from one of your, Your group members, she wrote profound and honest reflections on loss that will make others feel seen and validated in their own grief as well.

This is a beautiful page that truly honors love and the immense impact grief has on our hearts. I think that that’s, it’s a beautiful review, first of all, but certain. That’ll give our listeners an idea of what, what they can expect from what you’re providing there. So how can they find it? We’re, I’ll, I’ll put the link in there, but if they go to Facebook, what are they searching for?

Uh, if you go on Facebook, it’s letters to the word T O to Zachary, Z A C H A R Y is what is on Facebook. Uh, the, right now, the icon is a picture of me and my wife and our kids at a, at a younger age. If they’re looking for that kind of picture on there, although my son was 15 when he passed and he’s far beyond what he looks in that picture, uh, on there.

Uh, so there’s that. And then on Twitter, Instagram, and TikTok, it’s at letters to the number two, Zachary.

Jason, thank you for taking the time to, to share this. This is, it’s not a topic that most people want to talk about. It’s, it is a part of life, unfortunately, that we do run into at different times of our life.

Um, I’m sorry that your family had to go through this at such a young age for, for, for Zachary, but I appreciate what you’re devoting your time to and how much you’re going to help other families as, as they’re facing the same type of situation. And I know a lot of our families who listen are, are more vulnerable to this outcome as well.

And, um, so I, I really appreciate you being open and honest on this and us being able to have this conversation. I, I think it’s very, very helpful for others. I’ve learned a lot. Um, I think having this conversation, having met you, it will make me more sensitive as I meet other families as well. And so I, I think, thank you for giving that to me.

Well, thank you so much for having me. Uh, at the end of the day, uh, my goal is to help as many people as possible.

The post Episode #95: Dads Grieve Too: Breaking the Silence on How Men Handle Loss appeared first on Water Prairie.

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Struggling to find moments of calm amidst the chaos? This interview with self-compassion coach Robyn Vasquez-Gutierrez provides practical strategies of self-care for special needs parents. Discover how breathwork exercises and mindfulness techniques can help manage stress and anxiety. Learn the importance of building a support network and overcoming feelings of isolation.

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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/

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Robyn Vasquez-Gutierrez is a Board Certified Behavior Analyst and Self-Compassion Coach, specializing in Acceptance and Commitment Therapy. Her extensive background encompasses providing ABA services, supervision, caregiver engagement, and mentorship. In addition to her work in the field, Robyn has held various leadership roles, including positions at an insurance company.

She dedicates any available time to deepening her knowledge of Acceptance and Commitment Therapy (ACT).

Full Transcript of Interview:

Tonya: Robyn, welcome to Water Prairie.

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

This is, this is interesting cause you’re gonna be bringing a topic that we haven’t talked about before. We have talked about self-care before. We’ve talked about just how important it is, but we haven’t necessarily given a lot of tools and tips to help solve the problem, and this is where I’m excited.

The, um, The Water Prairie Chronicles, we focus mainly on trying to encourage and support parents, especially these children. So, parents who have children with disabilities or, um, developmental or intellectual disabilities, different types of issues that they’re facing. Sometimes maybe it’s just really emotionally intense kids, but, um, but a lot of our kids feel pressure that they have to pretend that everything’s okay all the time.

And that’s why I thought this might be a fun topic for us to really get into. Can you share why it’s important for parents of special needs children to acknowledge and accept the challenges that they face instead of pretending that everything’s just fine?

Yeah. Yeah. Well, I think, I think that’s a beautiful question and a million-dollar question.

And I never want to assume that I understand these parents reality. I am a parent myself, but my son is neurotypical. And I just think I’ve worked in the special needs population for most of my career. So, I actually worked as a board-certified behavior analyst with mostly with the autistic community. I worked and supported other children that had different developmental disorders and needs and special needs.

And with that, I supported the family. So, I really saw firsthand in their home, how they do exactly what you’re talking about. They, there’s almost like this mask that we put on that they put on, I should say, that’s like, everything’s fine. This is my life. These are the cards I was dealt. So, I just have to deal with it.

And I would say why it’s so important to lean into the reality or to be honest and learn to ask for help is because. They’re going to burn out just the reality of their life is difficult. They’ve been dealt some difficult challenges and if they don’t have this community, this, um, you know, the village that they can call on and ask for help their, their levels of burnout are going to be so high.

And I know that, like, 1 of the 1st things that you ask a parent, um, you know, you ask them about their worries. They are worried about the here and now, but that 1st and foremost, they’re worried about the future, right? What is, what are their children do when they’re not here and. How do we get them, you know, how do we help them live a life that is meaningful to support themselves throughout that process?

So I think it’s just so important that they lean into the reality that they learned to ask for help and that they rely on their community and the people that can lean in and support them. So, they don’t feel so alone and isolated.

You know, I was at the store the other day and, um, my husband and I’ve been traveling for a couple of weeks and I’m at a, actually it was, it was a Target store.

So we’re in, you know, it’s nice and clean and all they had all the carriages lined up and I see a mother come in that has a little boy. using a cane and he looked like he was maybe five or six, could have even been as old as seven. And, um, and he was not a happy guy. He’s, um, he’s bad-mouthing his mom.

He’s just, I mean, the language that, that came out of this child was just very, very shocking for me to hear. Um, and so she’s trying to get the cart out that he could sit in the, they had a couple of them for, for older kids to be able to sit. And. Other customers had been putting their carts in front of it.

So it took her a moment to kind of get them moved the whole time. He is just belligerent, the whole, whole thing that he’s saying to her and all. And so she finally pulls the cart out by now he’s laying on the ground. I can’t even repeat what he was saying. Cause it’s not language that I even use, but she’s saying, you know, well, I’ll, I’ll, I’ll buy you some candy. I’ll buy you a toy. He’s like, I don’t want to candy. I don’t want to,

I just want to go home. And, um, and she’s like, you know, I’m sorry, I can’t, I can’t control that. People don’t know how to put their carts back. And so she finally gets the cart out and she’s looking at me and I have a child who’s visually impaired.

And at, at his age, she refused to use a cane. And I thought, you know, well, it, it probably can’t hurt. Let’s see if I can, can interact with him so she can get the cart out. And of course, then he just turns on me. He does not want anyone. He just wants to go home. So, long story short, he got what he wanted. He got to go home because she was just so exhausted.

She couldn’t even pick him up off the ground to get him into the cart. And so, so they left. And as she walked by me, I told her she was, she was, she was doing a good job. Just, just, just to hold on things were going to get better. Um, and she, she just whispered a quick, a quick thank you as she went by, but I couldn’t help thinking about this interview coming up and thinking, you know, We, she, she, she was beyond saying everything’s fine.

It was obvious that things were not fine, but she had gone through the bribery thing, she had gone through, you know, all the things that we, as parents know that we’re not supposed to do, but you could tell she was, she was at her end and she probably just needed two things. And they were on the way home from something and it was just going to be more to go back out again.

But, um, but I thought, you know, this, this poor mom is the only way I can think of it. You know, a lot of us have been in that situation where we’ve had the meltdown, we’ve had everything else. And to me, the punishment was, we’re just going home. So, in her case, the punishment for herself was, but he got what he wanted.

So she really was in a no-win situation there and totally exhausted by the look on her face. So. You know, that, that pressure to conform to the normal parenting standards, which would be to discipline him to, to take him out to the car and talk to him or whatever your form of discipline may be. I’m not going to pass judgment on anybody there.

Um, I, I don’t know that that was, I don’t, I don’t think she even felt like that was even worth it, but she did go through those normal ones of the bribery or trying to convince him to do things. But I think that makes. It feel even more isolated because she’s in a situation where she really couldn’t in, in her mind, at least it looked like she didn’t know what else she could do other than just to give in at this point, um, You know, it’s like, how does that, that pressure to be that normal parent, like whether it’s to reprimand them or like when he’s laying on the ground, there were other things that are leading to him being on the ground.

And from what I could observe, he had no vision at all. So, her parenting of him is going to be a little bit different just because of his physical needs with that. We have, you, you mentioned, um, kids that are on the spectrum.

There’s going to be times where they are so overstimulated that they’re going to be on the ground.

And it’s not because they’re having a tantrum. It’s because they’ve reached the point of where they cannot take any other sensory input and they’re just trying to get away from it. So, our parents, they’re not going to be doing that quote, normal reaction that other parents do. How does that lead to that isolation that they’re experiencing?

Oh, my gosh. I mean, how could it not? And I thank you for sharing that story. And I just think about that mom and she must honestly be thinking about you still because I assume too that these parents when they go out in the community and this is happening, they’re like, not again, right? Like, I’m also being judged now for how this looks and how I parent and how I present.

Where these people don’t understand, they don’t know what it’s like to live in my shoes. And yeah, I just needed two things. And now my whole world, you know, now my whole night, you know,

who knows what it was.

Yeah, yeah. It could have been something so simple. Um, and yeah, so they, they, they take on this judgment or perceived judgment that’s happening.

So it’s just so beautiful when more and more people like us can reach out in the community in real-time and kind of offer some support, even if it’s not accepted. Um, I think that goes a long way. So. That’s super beautiful. And so remind me of the question. I, I kind of segwayed from that.

Well, just, just how that those situations, how does that contribute to how isolated they might feel?

I mean, yeah, like I said, I think it, there’s no way it couldn’t. I think the other thing that comes to mind when I hear you talk about this is. Parents in that situation are managing the behaviors of their children while at the same time trying to manage their own reaction, right? This kind of behavior can really trigger something inside of us, whether it’s a childhood wound of our own, because we weren’t allowed to act that way, or we weren’t allowed to have emotions in that way.

So it creates this trigger for us. And then people are looking and all of the things. So, that also Contributes to feeling isolated, feeling alone because they’re like, no one else gets this. No one else understands. So, I’m just going to go back to my bubble, back to my world where I can kind of shut it off and not have to let the world in and see what’s happening.

I think sometimes too, um, we may have that feeling of guilt when we’re in that situation. Um, definitely you feel like you’re being judged by everybody around you. It’s, you know, it’s, and even as I was interacting with her, I was watching the other quote, well meaning customers who were around us who were walking away, they, they, a few of them didn’t even get a cart during that time because they didn’t want to deal with.

Being there. And I think some of it might not have been a judgment side, but I could see how that could come across to this mom and probably led to her leaving instead of trying to just kind of put herself in a bubble with him for a moment and figure out what to do for him and ignore everybody around her, because I think she could have actually salvaged that trip and gotten what she needed if she could have blocked out all the rest of us that were around her.

Um, and some of the people, what I was thinking is, so, so she’s responding to all their looks and their stares and they’re almost shunning as they walk away from her. But I think the people that were observing it were just as frustrated because they didn’t know what to do and may not have known. They may have had compassion.

They may not have. And of course, if they watch me try to interact, they were going to go even further because it did not work, but, but at the same time, you know, it’s like mom to mom, if I had been her, I don’t know what I would have done either. I would have also put up that shield saying, you know, no, I’m, I’m fine.

I’ve got this, you know, um, but it would help if we could actually let another mom help us or let, right. Okay. Another customer helped us, you know, maybe grandma’s had a grandchild that she’s been through with this, but she didn’t know how to. Intrude on that.

Well, it reminds me of the conversation we were having that sometimes we don’t know that we need help until we’re too far past the point of needing help.

And so this mom in that situation, she probably could have used help, but because it was already an escalated situation, maybe she wouldn’t even know how to respond to that if someone asked, because at the, at the core of it all, it comes down to communication, you know, us on the outside of the circle, how can we communicate and ask these families, you know, What do, what do you need?

How could I be supportive to you? And how can the family, the parents with special needs, um, children with medically fragile children, how can they respond to that? Well, they can do that better if they’re, if they actually evaluate that question from a less escalated place. So, when things are kind of status quo, when things are a little bit calmer.

Maybe that’s a great way to kind of think about like your values. What’s important to you. How do you want to ask for help? How do you want to actually accept help? Cause asking for help and accepting help are two very different things.

Yes.

Oh yeah. I think that that was kind of the perfect storm because it was already escalated.

And like you said, those people who might’ve had a lot of compassion, perhaps. You know, perception is everything. So, perhaps they’re like, well, I don’t want to interfere. I just, it’s better if I step back. And in that moment, maybe it was because, you know, the child’s response to you, but we don’t know until we ask.

And we we’ve talked about, there’s, it’s probably been about a year now since we had the interviews, but we’ve had a few where we talked about how, when you have a newly diagnosed infant who’s you’re bringing home. How can the family and friends support that, that new mom? And, and I think, you know, a lot of times we think about that where, you know, like not, not just bringing them a meal, but maybe cleaning up a dish or something and supporting them there.

But we’ve never really talked about how do you support somebody after that point? And this is a case where. We do need to continue supporting each other as, I mean, even if your child isn’t diagnosed with a special needs, you still, as a parent can understand those bad days, we all, we all have days where stress just gets away and, and it’s, as our kids are growing, as they’re learning independence, they start pushing back a little bit.

And so we have different situations where we. We can still relate to how this mom might have felt and if this mom is listening, I don’t know who you are, but I, I hope you’re getting encouragement from this and not feeling like, like we’re just criticizing cause we’re not, we understand where you were that day.

You want to help you. Um, yeah, we want, we want to help. And I want to help those that are listening that might be in Target one day seeing somebody else having a hard time or in the grocery store, wherever you might be, um, interfering isn’t always the way, but sometimes maybe just moving things out of the way so mom can take care of it or, you know. something. It’s, um,

yeah, reading the room.

Yeah. Yeah. Let them have the space for a while. Um, but I, but I want our parents no matter who they are to feel like they can be in society, they can be out doing things. And it’s hard. Sometimes the amount of work that it took to get out the door, especially our medically fragile kids, there’s so much equipment they have to pack together.

They have to plan to make sure feeding schedules are in place. You know, all the, what ifs that might happen while they’re out just for a simple trip to the grocery store to, to go pick, pick up a tube of toothpaste because they ran out, you know, it’s not easy to do, but they need to be, be free enough to do this.

So, um, so switching from that situation, um, I wanted to think a little bit about still thinking about, about these parents here, the, um, They have all the stress. We’ve kind of described that. How can they find that healthy balance between caring for that high-needs child and taking care of themselves?

Cause that seems impossible. I think a lot of times, and you’re going to sacrifice yourself over your child every day. So, do you have any tips on how they could kind of. Make that transition to make sure that they are caring for themselves?

Yeah, I think so. And again, I never want to miss the mark and, um, what I’ll say, you know, I think you find what works for you and figure out like how to incorporate, like what feels good in a way that contributes to your wellbeing over time.

And so I think the first thing that comes to mind for me, and no matter who I’m talking to is identify your values, like first and foremost, like, what is the most important to you? Who and what is the most important to you? And. I’m sure it’s your children, right? Are going to be number one. Um, but I would say, don’t forget yourself in that process.

So are you important to you? Are you important? Because going back to that thought that most parents have of like, what’s going to happen when I’m not here? Well, we want you to be here for as long as you can be. We want you to be emotionally available, accessible. All of the things that you need to be in order to show up for who and what is most important to you.

So identifying those values, I think the second thing that comes to mind is we’ll be here about self-care. I mean, it’s such a buzzword right now. Um, everyone’s talking about self-care and the media is selling us self-care in the term, in the form of, um, you know, external things, massages. Facials, getting our nails done, getting our hair done, um, getting our makeup done, buying clothes, like whatever it is.

And I’m not saying that those things aren’t self-care, but those would not be where I would recommend you get started. Right. Those are external things. So, I think, um, some ways that these parents can really start to balance the, the balance between really showing up for their children and being there while also taking care of themselves is building in small, actionable steps daily.

Like, um, I’m actually a breathwork physician. Facilitator and training. So, our breath, for example, is something that I always recommend to people. Um, one, it’s free. We can always breathe. It’s free. It’s accessible to us. Um, but there’s really a beautiful benefit of. Intentionally breathing that it has on our nervous system.

And so that is self-care because you are literally taking care of yourself today in order to show up better tomorrow and the day after that, and the day after that, and so on and so forth. So, you get to think about your future in that way, instead of. Um, maybe some of the worry that’s coming up, I’m not saying the worry is going to go away.

That might still be there, but we’re going to try to balance it a little bit more. And your breath can do that. You can really kind of drop in and just even listen to like, what are my thoughts telling me? Because these parents are, um, Living on autopilot, you know, they have to, they have to make the next decision, the next choice they have therapies and equipment and deductibles and doctors and all of the things like they have a lot to get done in the 24 hours that exists in a given day, but if they can slow down and just breathe for 10 seconds, and then that 10 seconds turns into a minute and then five minutes, you know, little sips.

Of breath each day can really have a beautiful impact. So, I think start there, start small. And when you evaluate your values, who and what’s important to you, um, you can start to build in other things that really feel good to you. Maybe it’s some movement, maybe it’s getting outside for a five minute walk, tagging someone else in and saying, I’m taking five minutes.

I’m taking 10 minutes to myself because I deserve that. And my worth. My worthiness is not dependent on the things that I accomplished this day or the behaviors that my child did or didn’t engage in today. I am worthy of this because I exist.

That’s very good advice. Um, I, I, I like that cause I was going to ask you how to, how to incorporate that in. So, you’ve already, already jumped, jumped ahead of me on that one. The um, So you’re a self-compassion coach.

Yeah.

Tell me exactly what that means.

Yeah. It’s a, it’s a confusing, confusing word because

I haven’t seen it before.

Yeah. Well, and I think self-love, self-compassion, all of those things kind of overlap. And I would say to me, compassion is. Treating yourself like you would treat your best friend, being your own best friend, being your biggest cheerleader. And I think, um, why compassion and self-love and self-trust are so important to me is because I, I do know firsthand the impacts of anxiety and how the voice of our inner critic can really, um, Um, be detrimental to our mental wellbeing, to our emotional wellbeing, to our mental health.

And so when we can start to foster and develop this self-compassion and learn to treat ourselves, like we treat other people, like we treat our friends, um, when we can learn to identify like, okay, the voice of my inner critic is here. What, what is she trying to teach me? Like, what is the lesson versus taking that as truth?

Then we start to transform. So, to me, I just want. Um, you know, I primarily support women, um, caregivers. I really want women to learn to love themselves. And I think as moms, especially everyone wants a piece of us. And so we put ourselves on the back burner because I mean, especially you, you have children in general, right?

Especially they’re young, they’re going to different things. And then you add on. This layer of having special needs being, you know, having a child that’s medically fragile, like, of course, you’re the voice of your inner critic. That voice of that internal dialogue is going to tell you you’re selfish. Like what are you doing?

Trying to even prioritize yourself. But when you can start to notice that, observe it and you get to change it, you get to change that voice. You get to learn the lesson. And you get to lean into that compassion and you can start to surround yourself with people who are like minded in that way too, which again, fosters and develops that sense of compassion.

Nice. I appreciate you explaining that. It’s, it’s a phrase I had not heard as far as self-compassion coach, but having you explain that, I think, Every, every mom, especially should be working with someone just cause I, cause, cause like you say, it’s really, it’s really hard to not put yourself in the back burner to take care of.

Cause we’re in that caregiving role. That’s, that’s, you know, it’s, it’s, it’s where we are at this stage of life. And many of us will go from caregivers for our children and our high-needs children to caregivers for our parents one day. And so there may not even be a gap in between. It may just be a change of who we’re caring for.

Yeah. Excuse me. We have others who are listening who are, um, adult siblings of someone that they’re still caring for because their parents are no longer able to care for them. So, we have a lot of listeners that are in that, that, that, that role, whether they’re a parent or not. And, um, so I think, I think that’s really important.

So, so we have self-compassion coach and you also work with acceptance and commitment therapy. So, that’s what you’re explaining with what you’re doing.

Yeah.

Am I connecting this correct?

Yeah. You’ve got it.

And then there’s breath work as part of it. All right. So, we’re, we’re, we’re, we’re getting there. When I, when I read your bio, it’s like, there’s so many pieces here. I wanted to make sure that I understood all of it. Yeah.

Well, and I think it’s because, you know, I, by trade, I’m a board-certified behavior analyst, BCBA. I worked with the autistic community, like I talked about. And then under, um, Being a BCBA, there’s this framework acceptance and commitment therapy.

And when I started learning about that, I was like, I need to do this. I need to transition because I have been the woman for most of my life. I’d say most of my adult life anyway, that did not show myself a lot of compassion or empathy, though. I am a very empathetic person. I’m very compassionate, but I was giving all of my energy to everyone else.

Before myself. So, I’m just really passionate about helping, um, people learn to prioritize themselves and not feel guilty about that, that it’s actually okay. And it helps you show up better and stronger for the people that you love.

So I’m sure in your practice, you’ve run across people that might be resistant or unfamiliar with what you’re doing. How do you help a parent understand the value? Because, because we have a lifetime. of being taught to put others first for me as, as, as a Christian, that’s, that’s where my mindset is. I want to help others, but I do find that the downside is that I don’t always take care of myself in the process and I’m learning.

It’s taken a long time to get there, but I’m learning. So, how do we kind of break that where you see that it’s not, it’s not wrong to also think of yourself. It’s not selfish whenever you think of yourself. I mean, it could be if, if you take it to an extreme, you’re not caring.

Yeah. I mean, first of all, I want to just acknowledge that it’s a lifelong journey, I think for everyone.

So whether you are working with a coach or a therapist or reading self-help books or. Professional development, like whatever it is that you’re doing, I think that’s a lifelong process and whatever chapter you’re in right now just leads you to the next chapter. So, we get to continue to learn and evolve and grow.

Um, but in terms of like, how to not feel like it’s selfish, I think that’s where acceptance and commitment therapy comes in because that’s our mind. That’s our mindset that is very fixed. That has, you know, it’s kind of fused, um, for lack of a better word, that’s a, A word in acceptance and commitment therapy is like, we’re hooked with these rules or these thoughts because our whole life we’ve been told, don’t be selfish.

Put others first. We’ve been told not to have emotion. Suck it up. Buttercup. Be a big girl. Like all of these things, right? We’ve been told our whole life, um, have really. Let us to believe that those are actually true and factual. So, when we, when we can step back and we can observe, what are the thoughts that we’re even having, which we can do through acceptance and commitment therapy, which we can do through breath work, then we get to change that narrative.

We get to kind of change that talk track, but again, just acknowledge. That these thoughts are here. So, if someone out there is listening, they’re like, well, that sounds great, Robin, but I have so many things to do. I, there’s no way I can put myself first. Maybe just observe that you’re having that thought, observe it without judgment.

Ask yourself, is it true? Is that a true thought? Maybe it is a true thought. Maybe it’s not. But if it’s, um, a true thought, is it helpful? So that’s kind of the next thing I would ask myself. Is this a helpful thought? Whether you answer those questions with a yes or no, you’re going to be able to identify like what intuitively feels right for the next step.

And, um, you know, I think going back to what I mentioned in terms of, uh, Yeah. Pairing some things. One thing that I talk about a lot with my clients is habit stacking because we’re all busy. Like if we could all have more time, that would be great. Um, but we all have this 24 hours. I don’t believe it’s created equal, especially for our listeners listening today.

Right. They have all of these. Things on their plate, however, the time duration is not going to change. So, you just get to ask yourself, what is the most important for in this next 24-hour period, taking it small, knowing that beyond that there’s some bigger issues and challenges and future me will know how to manage that.

But in this 24 hours, how can I build in some things that feel good? How can I slow down and just be aware of my breath? Well, maybe when I’m doing the dishes, I can just notice. the soap on my hands. I can notice the way that the bubbles feel. I can breathe while I’m doing that. I can notice the air. Is it cool?

Is it warm? These things that bring us back into the present moment can help eliminate some of that guilt because we’re not taking away from the future us, we are just contributing to future us by slowing down, pouring into ourselves so that we can live in the present moment because we live in the past or the future.

You mentioned, um, just feeling the water on your hands when, uh, just triggered a memory for me when my kids were young and I was trying to teach them. Well, I say I, we, because my husband and I had to do this together, trying to teach them how to self-soothe without relying on me going in there all the time.

And my daughter at the time, her nervous system was just off the charts. Um, we were doing brushing techniques and everything with her. And so it was really hard to let her go. find on our own, how to, how to calm herself. And so it go into the kitchen and I’ve shared this before and other, other interviews, I would wash dishes, you know.

We may have had a dishwasher, but it didn’t matter. Just that warm, the suds it was calming for me to have that exposure. Um, the noise of the water running would help calm what I was hearing in the other room, excuse me. And I could give it 10, 15 minutes before I went in again to kind of calm myself. And then I was more relaxed when I went in because of it all.

So, um, so maybe I was finding ways to, to, to, to, to treat myself without knowing it during that time.

I love that. Yeah. I love that. And that gave me chills just hearing you say that you did that. And it reminded me of an experience where, um, when I worked as a BCBA and I was going into these homes and I was working with the families, sometimes it was really challenging for these families to hear their children cry, right?

They, they wanted to do all of the things like, um, Let me use some bribery or give you whatever you want. Or like, how do I just make it stop versus sitting in it? And so I unbeknownst to me back then when I was, um, not, I didn’t know as much about acceptance and commitment therapy, but some of my interventions for parents were the same.

So I remember specifically asking a mom when her child ended up on the floor and some kind of aggressive types of behavior, I asked her to go to her room and brush her hair. And that was like a random thing that I just felt intuitively. Like I have to give her a task, but I also wanted her to just have something to do and honor herself at the time because she wasn’t able to sit and listen to it.

And so maybe. Maybe I was doing that too back then and didn’t know it.

Yeah, it’s, I hadn’t thought about that, but you’re, but you’re right. Cause it, cause just that stroking the, the, the repetition of it between washing the dishes, the brushing your hair is part of it, but it also is giving you that, that sensory input yourself.

Yeah. That’s, that’s a calming. Well, we’ll see. We, we, we stumbled, but, but we found something.

It all came full circle.

It did. Well, I did want to ask. I don’t know if you can do it or not, but can you, um, you mentioned some of the breathwork earlier. Can you give a short little demonstration of what, what you mean when you talk about breathwork?

You know, I can talk about it a little bit and we can talk about breath awareness, but breath work is, uh, is a whole experience and it can be an emotional or a physical and or a physical experience. So, um, there’s kind of a lot that goes into, like, an actual session. We, we. Find a playlist that feels good and supportive.

We set an intention. So, a lot of the women, a lot of the, um, I actually do have men. So, a lot of the people who are coming to me to breathe, um, you know, have intentions of like, I want to let go of what’s no longer serving me. I’m holding on to a lot of anxiety or, um, Um, yesterday I had someone who wanted to let go of the things that she couldn’t control.

So we always set an intention in this breathwork session and then have this playlist that kind of is curated to that. And then there’s some talking and some affirmations and then of course the breath itself. And so there’s various kinds of breath patterns that we could use in a breathwork session. But what I would say for the people who are listening out there, I mean, obviously if you’re driving, don’t close your eyes right now, but if you’re doing that, um, Yeah, you’re doing the washing the dishes or folding the laundry or doing these kind of mundane tasks.

I would encourage you to maybe pop some music in your ear or do it silently. Like just listen to what feels good to you, close your eyes, and just bring your awareness to your breath. And so when we do that, I’ll demo that. So, I’m going to close my eyes. I’m going to take a nice, big, deep breath in. It doesn’t even have to be, you just.

Listen to what your body wants. My body is calling for a deep breath right now. Oh, I feel so good just circulating in my body and I’m going to exhale Let it go and as I do that I’m noticing the rise of my chest the fall of my abdomen Um, I can bring my awareness to this tiny space between my nostril That we never notice But, you know, how does this air feel?

It’s cool. It’s warm. You know, when I close my eyes, I personally am someone who visualizes. So, I like to see a lot of light surrounding me and that just feels really good. It feels like I’m in connection with my energetic source and that I’m on track. Um, so that’s, that’s what I would recommend doing to anyone who’s like, well, I don’t know about breath work, but we can breathe anytime for free.

If you’re really interested in breathwork sessions, there are. A million breathwork facilitators out there. I would always recommend finding someone who is a trauma-informed breathwork facilitator so that we can teach you how to take tiny sips because we are going to regulate the nervous system. And sometimes that’s hard to do, you know, if you’ve never done breathwork before, just fully surrender.

Like that. So, we do it, you know, one step at a time, one breath, work session at a time. Um, and that is an offering that I’m offering right now too. It’s free. Hope you find me through, uh, through June of this year. It’s a complimentary service. Um, so if you’re curious. Let’s, let’s breathe together.

Cool. I like that. All right. Well, this season we’re going to kind of switch, switch gears here. So, this season I’m asking my guests to share some words of wisdom by completing different statements and listeners, if you’ve listened so far to season three, you’ve heard, heard some others do this, but, um, Robin, I’m going to start by reading out a statement that I’m going to have you repeat the statement and then finish it with your own thoughts.

Does that make sense? Yep. Okay. All right. So, the first one I have is the biggest shift I’ve seen in parents of special needs children is when they realize,

Okay, so the biggest shift I’ve seen in special needs parents is when they realize. The power of community, the power of connection, when they lean into their support network and find people, find their village who can help support them on this journey.

I like that. Okay. So, the next one for parents feeling overwhelmed, the most important thing to remember about self-care is,

Okay, so for parents feeling overwhelmed, the most important thing they need to realize about self-care is. It doesn’t have to be big. It doesn’t have to be extravagant. We can start really small.

You can start building in some self-care, some self-compassion in your day-to-day life by pausing, by noticing your feet beneath you, by taking a breath, by just breathing, and being present in the moment.

Nice. See, I thought you would say it’s not selfish. So, , you went above and beyond what I was expecting.

Yeah. It’s not selfish.

I like your answer better.

Well, and I, I like saying that self-care is not selfish and I know we hear that a lot. And so I feel like. Um, when I say it to my clients or I say it to anyone in my community, I get kind of a visceral reaction sometimes, like a little bit of a silent eye roll or something like, because it’s, “Okay. That’s cliche, but how Robin?” And so I like that. I like saying it because it’s not selfish, but I want to be able to encourage you to take the steps so you can actually start to feel the benefits of self-care. And then you learn like, oh, it’s not selfish because I’m actually showing up as a better parent. I’m showing up as a better boss. I’m showing up as a better child, a better friend, because I’m giving to myself. Right. I also think we say we can’t pour from an empty cup and I know like, okay, those are words too, but that is so true. Right. If our cup is empty, like how in the world can we give to our children?

Yeah. All right. So, you’re ready for the next one?

Yes.

All right. So, a practice that has helped me manage stress and find moments of peace is.

Okay. So, a practice that has helped me manage stress and find moments of peace is breathwork. Finding the power of the pause. Even if it’s not, um, slowing down and intentionally breathing. Can I pause and can I notice what’s coming up for me? What thoughts am I having? What am I doing with my body? How am I engaging with the world around me?

As you’re saying that, I was thinking how many times we hold our breath thinking that we’re breathing.

Right.

And I think a lot of our parents, if, if you think about it, if just having that pause in that moment, if just having listened to this and thinking about their breathing, how many times do they hold their breath and they’re not, they’re not breathing. They’re just holding on, but they’re physically holding as well. During that time. Right.

And they’re, they’re clenching their jaw, like their whole face is, um, you know, there’s a lot of tension in that. And so when you pause and you breathe, not only does it feel good in your body, you can let go of that tension.

You can notice like I’m holding so much around the crown of my head, around my cheeks, around my jaw, or perhaps in my heart, I have a lot of heaviness. So, how, when I breathe, can I relieve some of that?

Well, the whole world can look different just with one breath. It’s just like you said, if you can just let go of that tension, you might, you might be able to think clear and see that maybe looking up and seeing back to our Excuse me.

Back to our example at the shopping, you know, look up and see the grandma that actually has a pleasant look on her face and she’s not judging you just, just that much to get there. All right. So, speaking of that, the last one that I had for you is the best way for parents of special needs children to overcome feelings of isolation is to.

Okay, I’m going to try to get that right. The best way for parents of children with special needs to overcome feelings of isolation is to. Ask for and accept help.

Nice.

So it goes back to that, right? Building community.

Stop right there.

Okay. Perfect. Perfect. I love it.

I couldn’t have asked for a better answer. Excuse me. There was something I was going to say, Oh, uh, the, um, the whole time we’ve been talking about this since you first introduced what you do, I keep picturing someone laying down with, um, cucumber on their eyes.

Yeah. It’s like, I’ve always, I’ve always thought, well, self-care is not for me because that’s what I picture. Yeah. It’s just. I’m just kind of a down-to-earth person.

Well, and I like that you bring that up too, because, you know, I think maybe everyone has this definition of self-care that looks similar to that, or they think it’s the massage.

And I talked to people and they’re like, well, I don’t even like massage. And it’s like, okay, well, that’s not the self-care for you, but there’s other ways to care for your nervous system, to care for your mood. And it can be really simple. So, we let comparison culture get in the way. Social media tells us what self-care should look like.

But when you breathe and I know I’m harping on this breath thing, but it’s powerful, it’s transformed my life. Um, but when you breathe, you really tap into your intuition and you can identify like what actually feels good. And your time is so limited for those that are listening. Like your time is so. You don’t want to go get a massage for 60 minutes if you’re like, I don’t even enjoy that.

Don’t do it. Don’t do it. Don’t add that on. Spend those 60 minutes going for a walk, listening to a podcast, breathing, taking a drive. I don’t know. Whatever feels good. You deserve that.

So you have Robyn’s permission not to have to break the bank and go to a spa. You can now do this another way.

Yeah, yeah, and I, I like sharing that because I think for so long, when I, when I think about when I first started my journey towards healing, I was, um, I was very, I don’t know what the word is.

I didn’t hesitate to spend a lot of money trying to fix the problem, right? I tried to throw a lot of money at, like, something’s wrong with me. I was having a lot of anxiety, like, let me do the things that people say are going to help. Well, when I was doing that, Didn’t benefit me in any way because I hadn’t done the internal work.

I hadn’t regulated my nervous system. I hadn’t noticed my thoughts. So, it was like putting a Band-Aid on the situation and that Band-Aid eventually fell off and the problem was still there. So, I like sharing that because. You can find ways to build this in that don’t cost you a thing.

So you mentioned through June that you have, uh, a session that they can do.

Yes.

Yeah. Okay. What else do you like to tell it? Tell us what, what you offer, how they can get in touch with you, your coaching sessions, things like that, whatever, however you want to share with us. I want my listeners to hear how to get in touch with you.

Okay, absolutely. Well, I would say the 1st thing that I would love to extend an invite to anyone who is listening and feels like this resonates, or I want to be part of that community is an invitation to join myself.

Love club. This is a free community. I host it on the last Thursday of every month at 12 p.m. Pacific Standard Time. So, obviously we’ve got to take some time zone conversions into account, but if that works for you, it’s a way to join this free community with like-minded women who are, you know, experiencing the, you know, They’re experiencing self-doubt.

They’re experiencing anxiety. They’re experiencing, um, what it doesn’t like, what it feels like when they don’t take care of themselves. So, we share tips, strategies. We do a little breathwork in there. It’s just this beautiful club. You can come without any pressure, any expectations. You don’t have to speak if you just want to hear people talk.

It’s just this beautiful. So. So, I love sharing that I want to get that to be a bigger community. So, anyone and everyone is welcome to that. If that interests you, you can find me on Instagram @coachrobyn_. That’s R O B Y N underscore. So, @coachrobyn_, um, you’ll see, it says I am a coach, a mindset and self-compassion coach.

And, um, from there, these breathwork sessions are available too. I offer 30-minute, 60-minute, and group sessions. Breathwork session experiences, and you can sign up for the, there’s a link in my bio. You can sign up for free for those breathwork sessions through June of this year. Um, in June, I graduate.

And so I’ll be transitioning what those services look like and what those offerings will be some more to come then. And then, um, the other thing that I’m really proud of is my signature program. So, this is a three-month, 12-week one-to-one session. Um, so if you’re looking for coaching with a self-compassion mindset coach, a woman who has experienced anxiety and some forms of depression, I’ve gone through a divorce.

I’ve gone through some difficult things and I’ve gotten back on the street. Um, if that resonates with you and you feel like I’d like to work with you, or at least have a conversation around what self-compassion can do for me, um, then my signature package, I, I have a program called nurture her and, um, that’s also an offering that we can chat about on Instagram.

I have a website, uh, Reflect and Refine is the name of my company. So, https://reflectandrefine.Net. So, you can find me. Um, you can say the word like “compassion” or “Water Prairie”, and we can continue the conversation offline.

Excellent. Excellent. Well, I hope that, that our listeners will, will check out what you’re doing on Instagram.

Um, I love the, the intro idea of just kind of touching base with your monthly, uh, uh, um, group just to, to kind of get a, get a touch of what you’re doing there and then ease in from there. The, um, I think it’s always nice whenever we can kind of check out with, with a, a low commitment level and kind of ease in, especially the parents that we’re talking about.

Cause as we say, their time is so limited, but, um, but that’ll give them a good, a good taste of what you have to offer. And then they could. Yeah. Follow up with your coaching time as well.

Absolutely. Super important that they find a good match for them. And so testing it out is a great way to go about that.

Well, thank you for sharing this with us. I’ve, I’ve learned a lot from it. Um, I’ve really enjoyed chatting with you and you’ve joined our expert panel as well. Is that correct? I believe I have you on my list for that.

Yeah, I have. I, um, we’ll need to chat about that. I’m excited.

So, listeners, you may, you may see and hear from Robyn more over the next season.

So, we, um, but I encourage you if you have specific questions about what we’ve talked about to send those to us and we will get the answer to you. So, if you, neat connection. Um, connect with Robyn directly. You can send an email to Water Prairie at [email protected] and we’ll get that back to her as well.

Um, we want to make sure that you’re getting what you need as a parent and that we can support you as, as well as we can. So, um, so anyway, so, so Robyn, thank, thank you so much for, for being here today. And I’m looking forward to chatting with you more in the future too.

Absolutely. Thank you so much for having me. It’s been a, been a pleasure and an honor.

The post Episode #94: Finding Calm in the Chaos: Self-Care for Special Needs Parents appeared first on Water Prairie.

Find the full directory at waterprairie.com/listen.

This heartwarming interview with Sarah Boss dives deep into her experience growing up alongside her brother on the autism spectrum. Sarah offers a unique perspective on the challenges and beautiful moments of being an autism sibling.

This video is a must-watch for anyone seeking to understand autism spectrum disorder (ASD) from the perspective of an autism sibling. Learn valuable insights on:

This video is packed with resources and inspiration for parents, families, and anyone interested in autism spectrum disorder.

Connect with Sarah:

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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/

Sarah Boss is a certified Astrology Coach and Holistic Healer. She combines Astrology with different Holistic Healing modalities to help people successfully navigate major life transitions, empower themselves and manifest the life of their dreams. Sarah has lived in China, France and Argentina and offers sessions in English, French and Spanish. You can learn more about Sarah at her website https://www.sarahsoulboss.com/.

Full Transcript of Interview:

Tonya: Well, Sarah, welcome to Water Prairie.

Sarah: Thank you so much for having me. I’m so excited to be here.

Oh, thank you. I appreciate you reaching out. Um, the topic that we’re gonna be talking about is one that I haven’t brought before. I’ve talked to other siblings who have had a sibling with different disabilities, but we haven’t addressed this with autism before.

And so I was really excited whenever you, you offered this as a possible topic we could talk about. So in our earlier communication, You mentioned empathy, compassion, and belonging that your brother instilled in you. Can you share a specific story or a memory that demonstrates this?

Yeah, absolutely. So there’s one memory in particular that sticks out. I was around 10 years old, which would have made my brother 14. And we went on the bus together. And my brother, when he would, Michael, that was his name, uh, when he would go into the bus, so he had rituals. So he couldn’t, for example, sit down once, but he had, he would go up and down, up and down, up and down.

And then there were always a lot of facial expressed expressions, grimaces, you know, sometimes that would happen, you know, clicking that, that sort of thing with And so we went, we were in the bus and, uh, we got into the bus and he was, he was doing a ritual of one of his rituals. And every, there were a number of people, you know, um, who actually moved away.

And I remember being so struck at that age and, you know, especially when, when you’re 10 and you’re kind of, you know, learning about the world around you, that why would People be moving away when, you know, from somebody from essentially, you know, there are, they were moving away from something that they didn’t understand.

So there’s the fear of the unknown, right. Of the thing that you don’t get, but he wasn’t somebody who was harmful, who was, you know, who was looking to, to inflict, you know, harm to anybody in any way. So this really instilled in me this, uh, sense of empathy and that was Uh, honestly, one of the most beautiful gifts that my brother has given to me that, you know, just because somebody maybe looks different from you at the end of the day, we’re all connected, you know?

Um, and so it, it doesn’t mean that there’s not something beautiful inside and you really shouldn’t judge based upon what you see on the outside. And it wa s painful for me as well to see that and t were moving away, you know from because it’s it’s this feeling right of rejection essentially. And I felt that myself. Not just For him, but I also felt that myself as the sibling, like they’re rejecting both of us because I’m part of this, you know, and that was something that I’ve actually has been a big theme in my life in terms of understanding.

Belonging and finding belonging and just being accepting towards everybody, regardless of ethnicity, regardless, you know, of, of whatever is, is on the outside and because it’s really what’s on the inside, that’s the most important thing.

I think you hit on something that’s really accurate that people may not have thought of before.

Um, and I’ve, I’ve thought of this recently myself. A lot, a lot of our aversions to people or fears, even as you say, is that it’s just not even a lack of education, but just a lack of exposure and a lack of experience, and as time is going by and we’re having more awareness of disabilities and of just differences between each other, I think, you know, it can only help us to recognize that, you know.

You and I don’t, don’t, don’t look the same. We don’t talk with the same accent. We don’t, you know, our hair is very different. You know, it doesn’t mean that we can’t connect with each other, but I think a lot of those, um, almost like a hatred level that comes in, I think it’s a response to fear and not knowing because it’s something that we’re totally uncomfortable with, and we’re not sure what to do. And I say, we just general people in general, we, we, we all have something that we have a hard time connecting with and we respond differently. Some people run right toward it because they want to know more. They were, they’re curious. They want to understand more. I love, I love traveling around the world and meeting new cultures, but I don’t want to just visit for a day.

I want to stay for a week, for a month, because I want to learn why, why we behave differently. Because it’s the same mindset. We just respond differently. Because of our cultural background or experiences, but we don’t necessarily do that when we meet someone who may be in a wheelchair or, you know, instead, we just kind of walk on by and we don’t take that time to stop.

And it’s part of what I’m hoping to do with the podcast is that as we’re exposing people to, to new individuals and new situations that they haven’t personally had a chance to interact with. Hopefully, they’re opening their mind a little bit more. And decreasing those fears and those concerns there. Um, I hate that you and your brother faced that, but I know a lot of our listeners have been in similar situations.

I meet parents all the time who won’t leave their home to go out in public because they just get tired of those stairs or those very inappropriate comments that are made and not everyone has the strength within to say, you know, come, come on, come on over and, and, and ask us any questions. Well, you know, I, I have met some who can do that and they, they would rather you come and just.

Ask questions, even if they seem rude, just because it’s going to help you understand more, but that’s an invasion of your space too. So you don’t always have that. Well, your family, what you, what you’ve told me about, about what your family has done in response to your brother. So he was four years older than you were.

Before I get into my next question, I wanted to ask you, When was he diagnosed? Was he a young child or was he older? Cause I’m thinking.

No, very young. Uh, he was, uh, probably around four years old. The story that my parents told me was, it was about that age where you normally take the kids, you know, to preschool and then you, you drop them off.

And what happened was they took him and they tried to drop him off because they didn’t know at that point he seemed, you know, everything seemed totally kind of status quo. And he cried and cried and cried and cried. And eventually the teacher called and said, you have to come back and get him. And that’s when they knew that something was, was off.

And so, yeah. Was shortly after that that he was diagnosed, yeah. About what year would that have been? Have, let me think. Um, he would’ve been 47, so if he was around four, that would’ve been, uh, 43 years ago. So that would’ve been in?

Yeah. So it’s 24 right now, so 80.

Yeah. Yeah. Yeah. Around 1980’s. Yeah. Yeah. Exactly. Yeah.

The reason I’m asking is autism was not readily diagnosed until later into the eighties. So he was, he and your family were fortunate that they had a doctor who knew what they were looking at. And we’re able to help identify what was going on, just the more people that I’ve talked to, that was kind of a gray area of time where there were a lot of questions still.

And we really didn’t know a lot. And so much has developed since then. But, um, but that’s, that’s when, when, when you had mentioned earlier about his age, it, it made me wonder, you know, he was one of the ones who was able to get that diagnosis earlier.

Yeah, I’m sure it didn’t happen right away. I’m sure that they probably went to a few.

I mean, I would go back and check with my mom, but I’m sure it wasn’t an immediate thing that they probably had to go and see a couple of, you know, doctors before they finally got the diagnosis. That’s probably it.

When I’ve talked to other adults who have been diagnosed as adults because of the same of that gap in time where they really didn’t didn’t understand what it was and it wasn’t recognized, but they later were able to get a diagnosis.

So, they went years and years without a name. That was, that was the only difference. The adjustment time that they needed, they were getting their needs met. It was just this unknown out there. They really didn’t know, or it was a misdiagnosis. It was called something else. But as we learn more as a population, they kind of were able to get a better label as far as what it was.

And not everyone needs a label. Um, I know for my family with my daughter, when she was, she was little, she’s, she’s visually impaired. I just needed a name because that helped. As we talked about people responding funny. As, as the wall meeting grandmas who would come by in the grocery store and go into comment about my child, and then would back up and ask what was going on with their eyes.

It was a lot easier to have a name of something just to say, well, she, she has albinism and then they may not have known what that was, but at least it gave me something easy to say, and not to have to explain everything. So, I think sometimes it does help to have to have a label as much as we don’t like to label each other.

It does help to give even our kids a tool to be able to say. You know, this is, this is why I need some extra help, or this is why I need to wear my headphones. Um, and everyone’s gonna be different on that. So parents that are listening, I’m not telling you to tell your child that they have a label. That’s not, not what I’m saying at all.

But as a parent, sometimes it does help you to kind of know as you’re looking for support organizations and all to know where you’re looking and where you’re getting help. Well, so given the time period that you were in, your parents had did, did, well, I would say they didn’t have, they, they didn’t have as many supports as are out there today. And so you shared with me, and I don’t know if you say it as A Law or ALAW. But tell me what that is and how did it get started?

Yeah. So ALAW stands for Autism Living and Working. And so what happened with my brother, his journey is that when he got to be a teenager, he could no longer live at home. He became violent and it was not, uh, and my, my parents didn’t honestly know how to navigate the situation. They tried different resources. I remember at one point we all went to children’s hospital, saw a therapist. It wasn’t, but you know, it’s, it’s not. It’s not your, your atypical behavior because you know, he, he has autism.

And so there was medications as well, putting them on medications, changing the medications. This was a whole long, you know, process. And so what they did at one point was they found a school and they sent him to the school. It was called Devereaux. And he was there until around, I would say from maybe age 15 to 24.

He was very, very young. Very unhappy at the school because it was, you know, kids who had all sorts of different developmental disabilities. It wasn’t just autism. I don’t really feel like they necessarily knew the best way to support him, but he was quite vocal about how unhappy that, you know, he was, and it just, it wasn’t an option for him to live with my parents anymore.

So what happened was what was founded a law. They, my parents met. Two other parents of, uh, autistic who had autistic boys. One of the parents actually has a, uh, both a son and a daughter with autism. And so they came together with the parents to ask for funding from the government and with that funding, they created a law autism living and working, which was this organization to support these, these men, they got a house in Phoenixville.

So, which is about 45 minutes outside of Philadelphia. My parents were living in Philadelphia and then they also had, uh, staff that were there 24 seven. So the staff to cook for them, to help them with things like brushing their teeth. Um, one of the, one of the, the men did not have speech. My brother was quite talkative.

I mean, he would talk your ear off, you know, um, about the same things typically, but he, he would talk. And so he really needed, uh, one, the one, uh, the man who did not talk, um, Matthew, he would, he would type like when he wanted to say something, he would type it on his, um, on his, uh, you know, his computer. But so they had staff there to basically To, to help them and then also to do activities with them to help them to integrate as well into society.

You know, like Meals on Wheels or, uh, my brother was working, uh, a few days a week. I forget what he, maybe it was CVS. There were a couple of different places where he did simple things. You know, if it was like stacking boxes, washing dishes with. I think it’s something that he did at one point, but you know something to get them.

So they’re not, they’re not in the house 24 seven, um, there was one staff member that would take him to plan a fitness a couple of times a week so that he would, you know, make sure that he got exercise. So that kind of support, so that was all, and that was all funded from the, by the government. That wasn’t an issue at one point where Republicans took charge of, uh, uh, you know, because they wanted to cut the funding and so they had to go, my parents actually had to go to court, you know, in order to petition to get a lawyer.

Lifelong funding, because that’s the other thing. Once the parents have passed, you want to make sure that your kids are supported right through, through all of that. So, so that’s what that ended up being.

Wow. Yeah. We’ve talked, um, last season we had, Amit Chawla on to talk about. Just that lifetime planning for the future.

And I have someone coming on this season, late at the season that we’ll be talking about as well. Um, very important because that is a big concern that most of our parents have. What happens after I’m not here anymore? How, how can I make sure that my child’s ready and able to be cared for? So I’m glad you mentioned that.

Excuse me. So you mentioned some of the things that they’re doing with a law. I really like that idea. And you had told me before about Meals on Wheels. So what is why is it important for them to be out in society? You mentioned a little bit of that, but what are the benefits that it brings? And is it just for the guys themselves, or is it for others as well?

It’s for, I think it’s just as equally important for other people, maybe even more so because, uh, you know, there’s so many times when I would, as a sibling of somebody who had a disability, when I would try to explain to them, okay, my brother has a developmental disability.

People wouldn’t understand. Even when I would say, okay, he has autism. They really wouldn’t get it. And they didn’t get it until they met him. And they had a lot of times these preconceived notions and, you know, autism, there’s a huge spectrum. I used to be a teacher, French and Spanish, you know, high school teacher in middle school.

And I had some kids who were on the spectrum, very high functioning, you know, but we’re talking Asperger’s what my brother, my brother, very, you know, obviously different, But with him, when people met him, they interacted with him. Then they understood. And I feel that that’s really important. First of all, in terms of promoting tolerance, in terms of promoting connection, acceptance, empathy, and people need to understand that different is not bad.

I mean, because these men were super gifted all in their own way. I mean, my brother had this. Passion for trains. He remembered every single train and he went to Paris when he was maybe six years old and he remembered every single station. And when I would go to Paris, he would say, make sure you ride this line and make sure you do this station in the station, you know, like a huge, very, very, very keen memory.

So I feel like it’s, yes, it’s important for them also not to be completely isolated. Everybody as humans, we need connection. Everybody, it’s, it’s, it’s a, it’s an innate need. So I feel that it’s really, really important for, uh, you know, for, for people who have developmental disabilities, yes, to be integrated into society and for us to see that different is beautiful too.

And, you know, cause there again, as we had said before, there’s this perception of the other and the other is something that we fear. We fear what we don’t know. No, let’s move towards connection instead. And embracing, you know, in the spirit, more of, of love, the thing that we don’t understand, you know, I think that’s super important because as we do this also as humans, even this most basic thing of, of, you know, connecting with somebody, for example, you know, who has a developmental disability and actually going and, and having, having a conversation with him.

There was a man who used to come and, uh, he would with Michael, like he would come visit once a month, he would take him out on walks and he would, his name was Henrik Just talk to him and interact with him, and that creates a ripple effect in our world. It creates a ripple effect of healing, of tolerance.

You know, I know it seems like a small thing, but those little actions really do, uh, they reverberate in, in terms of the, the collective society. So it’s, it’s very important.

Yeah, no, I completely agree on that. So as our parents that are listening, the rate of autistic diagnosis is, is much higher now than it was when your brother was diagnosed.

So a lot of our listeners may have a child who’s on the spectrum. What would you, what would you tell them as far as, um, how to find the right resources for their children? A lot of them aren’t sure where to get started. And now your family went out and created this from what, you know, from what you’ve seen, how would you advise them on getting started with trying to get that support?

I think the most important part, the first piece is the community connection. So making sure that you yourself as a parent have the support that you need.

So I would say connecting first and foremost to other parents or siblings or people who have, you know, who have family members with a developmental disability and see, okay, what was your journey? How did you handle it? You know, it’s very, I think that never underestimate the the power of word of mouth.

And so I really feel that, you know, when you, when you have a need and you put that out into the universe, the universe will bring you support. And I think it’s also very empowering to just see other people who have been through that, who have been through the experience. So you know that you’re not alone, you know, so you know that there, and so that you too, it’s so important that the parents have support.

For themselves as they go through this journey, not just because you’re in this caregiver role, right? You, you just are. That’s naturally in the caregiver role. It’s beautiful, but it also can be very, very draining. And so you need to make sure that you have yourself care and you have all those practices in place to make sure that your cup is being filled.

Cause if it’s not being filled, it’s going to be hard for you to, to fully, you know, give as well to your child. So that would be my first and foremost, just, Uh, would be my piece of advice is to really tune into your own network and talk, you know, communicate, talk to the people who have had, um, who have had family members with these, with disabilities and see what their journey was like, see what their recommendations are.

So last week we were talking about, um, neurodivergent children and using music therapy and listeners. If you were listening to that one, we told you to let us know if you’re having trouble finding resources. I want to repeat that again for this one. If you’re out there feeling isolated and you don’t know where to start.

Leave a comment on this or send us an email, let us know. And we’ll, we’ll get you connected where we have connections. And I think it’s, it’s so important that you have those connections with, with other parents. Um, not always with specialists. Sometimes you just need to talk to another mom or another dad and to just share those, those like experiences that you’ve had.

And as we said earlier, The spectrum is such a broad range. No two children are going to be the same, but that doesn’t really matter because you’re looking for a parent who you can connect with. And, um, and so, so that self care part and making sure that you’re taking care of yourself is very important. So thanks. Thanks for emphasizing that.

And I would also say don’t underestimate the power of self. Of, uh, social media for connection because nowadays, you know, social media, you go, for example, on Facebook, there are groups, there are community groups you can find, you know, support in terms of, okay, there is a Facebook group. I’m sure for parents who, you know, children with autism, you can, you can find that.

There are quite a few. Yes.

Yeah.

And, um, and I’m glad to help you find that if you, if you don’t know how to do it. Just let us know. We will, we will get you connected. We’re, we’re collecting as many resources as we can to try to help you as a parent be, be stronger and be able to, um, to find the path that you and your child need.

So, this, this season, we’ve been, um, working as part of the interview with having each of my guests. Complete a statement that has something to do with what we’ve talked about. So I, um, and I’m, I’m having a hard time explaining that with, with each of these interviews. So maybe by six months into this year, I’ll, I’ll, I’ll get this down.

But, but listeners, you’re, you’re starting to hear a little bit more on this. Um, and some of these statements will be used, um, to help promote the episode, but, um, but I’ve asked Sarah to answer three for me. So I’m going to, Say the statement that I’m going to have, Sarah, I’m going to have you repeat it and then finish the statement for me.

All right. So the first one is having a sibling with autism has shown me that the most important thing is

having a sibling of autism has shown me that the most important thing is empathy and connection.

Right. So the second one for families navigating a loved one’s autism diagnosis, the best advice I can offer is to.

Hmm. Uh, the best advice that I can offer is to seek support in particular from other and connect with other parents who have been on a similar journey.

All right. The final one, when it comes to individuals with autism, it’s important to remember that

it’s important to remember that each individual has their own beautiful magic inside just waiting to be discovered and their own gifts to share with the world.

So get curious about that.

We’ve been talking about your experiences with your brother, but you have a whole life apart from that. So tell me about any projects you’re working on, um, how our listeners can connect with you.

Oh, thank you. Yeah. Well, I, um, am a, a, an astrologer and a life coach and also a holistic healer.

So I combine astrology with life coaching to help people who are navigating. Major life transitions to find self empowerment and create the life of their dreams. And so I was living in China. I’m now in Philadelphia for for now. Uh, and so, yes, if there’s anybody who is seeking support when it comes to navigating a big life transition would love to connect.

I’m on. All the social media I do a lot of videos on instagram in particular which talk about what’s happening in the cosmos Energetically how you can work. We just had this big lunar eclipse that happened in libra. So, you know how to work with the energy Also videos on navigating big transitions in your life On finding peace, you know, in the moment, also when it comes to transitions, the things that you, you can’t change, you know, so finding peace and surrendering to, uh, to, to change and finding gratitude in the moment.

So you can connect with me on social media. My social media handle is Sarah S A R A H S O U L boss. My website is https://sarahsoulboss.com and I have a newsletter, which I publish twice a month with more tips for ways to really connect with and align your energy. So please reach out. I would love to connect.

We’ll put the links to, to, to all of that and the show notes too. So if you’re listening on the audio, you may have to go to the website link to get to that. I’m having a hard time getting the show notes to show up on Apple podcasts, but, but there is a link to the webpage everywhere else. It’ll be linked at the bottom with the video or on the webpage itself.

So, Sarah, thanks. Thanks for sharing today. I appreciate you bringing a different perspective here, but, um, but I appreciate you being open and just sharing to the creativity that your parents went to, to help support your brother and to give him a full life and not just to be sitting on the sidelines. So it’s really exciting to know, even being early stages.

With working with adults with autism that they had the forethought to be able to do this and to give him that and to, I’m sure it’s impacted what’s happening today with other families. So thank you for sharing that.

Yeah, thank you so much for having me. And also just for giving me the opportunity to share a little bit about Michael’s story.

I feel that, you know, in his memory, it’s a, it’s a beautiful thing and hopefully it can help others.

The post Episode #93: Empathy & Strength: Growing Up with a Sibling on the Spectrum appeared first on Water Prairie.

Find the full directory at waterprairie.com/listen.

Struggling with your neurodivergent child? Board-certified music therapist Samantha Foote joins Water Prairie Chronicles to show how music & positive discipline create harmony! Learn 5 musical coping skills & how music therapy complements other therapies. Discover how to unlock your child’s potential & create a joyful parenting journey!

Connect with Samantha:

Links mentioned by Samantha during the interview:

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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/

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

Join Tonya Wollum as she chats with Samantha Foote, a board-certified music therapist, Positive Discipline Parent Educator, and registered Music Together teacher. Samantha has a unique approach that blends the power of music with positive discipline strategies, creating a supportive and effective toolbox for parents.

In this interview, you’ll discover:

Tune in and learn how to unlock your child’s potential and create a more harmonious and joyful parenting experience!

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Samantha is a board-certified music therapist, a Positive Discipline Parent Educator, and a registered Music Together teacher. She obtained a Bachelor of Science degree from Utah State University and completed her Masters of Music with a specialization in Music Therapy degree from Colorado State University. She is a Neurological Music Therapy Fellow and a Dialectical Behavior Therapy-informed Music Therapist.

Full Transcript of Interview:

Tonya: Well, Samantha, welcome to Water Prairie.

Samantha: Thank you. Thank you for having me. I’m super excited.

Well, this is, I I’ve featured a music teacher before, and we talked about some of the, um, the changes that he makes to help address the needs of some of the students, but that’s the only time that we’ve been able to talk about music before.

So I’ve really been excited about this. I appreciated you contacting me and letting me know what you’re doing. Um, you wear many hats. You’re a music therapist, you’re a positive discipline educator, and you’re a parent of not just one child that’s neurodiverse. So you understand a lot of what we’re going to be talking about today.

How did you find music therapy intersected with your own parenting journey, especially for neurodivergent children?

I became a music therapist in 2011, and then I became a mom in 2015. So I was working with the neurodivergent population before I became a mom. And everyone said, you are going to have kids that are neurodivergent because You’re you work so well with the neurodivergent population.

And I said, that is not how that works, but it turns out when you’re neurodivergent yourself and you marry a neurodivergent man, you have neurodivergent children. So that’s how that worked out. But, um, yeah, just, I think it really prepared me to be a mom and understand my kids and just know how to help them and know, you know, their sensory issues there and how to recognize it.

Because when my oldest was diagnosed, everyone was like, Oh, he doesn’t have autism. He’s fine. And, but due to my work. I understood. I saw the sensory signs. I saw the social skills signs. He wasn’t communicating like a typical toddler did. And so I was able to help him and I was able to get him diagnosed.

Excellent. So you, you understand what I’m about to say. A lot of our listeners will, but those who are listening to support, I just kind of wanted to clarify some of the thoughts here for this next question. Parents of neurodivergent children. And I’m one of those, they face a lot of challenges. Sometimes they’ll face meltdowns.

Sometimes transitions can be a huge block in what. What can happen? I know for us, a lot of times it was just, you know, where are the shoes? Where are the socks? And then the stress level so high that we can’t even go wherever we’re going. Um, other times it’s just a frustration issue, but it’s, um, these challenges really build up with them.

Can you share some specific example of how you’ve used music therapy techniques that are informed by positive discipline to address some of those challenges?

Yeah. So for example, understanding your emotions, like having. A meltdown because they don’t understand what they’re feeling. We use music to teach them how to understand their emotions, how to process their emotions, and then how to use coping skills appropriately.

So for example, I might teach about anger and I use a Diane Alber books, the spot books, the emotion spot books for the younger kids. And we read the book about anger. And then we write a song about anger. And we write the lyrics and. We talk about like, what does anger feel like? What does it taste like?

What does it sound like? And we go through all the different senses, the five senses, not all the different senses we have, but we go through the five main senses because I’ve noticed, well, not I’ve noticed in research and just knowing neurodivergent kids, um, They have a really hard time with flexible thinking.

And so we’re expanding the flexible thinking by saying, what does anger sound like? What does it taste like? And they, they say, well, anger doesn’t taste like anything. I say, if you, if you had to imagine the anger tasted like something, what would it taste like? So we’re really trying to expand the flexible thinking within that.

And then we say, We write four different ways that when you feel anger, what can you do? And then I feel anger when, you know, they fill in the blank. So I feel anger when my brother takes my toy, I feel anger when my mom tells me no, and so we really get specific situations where they feel that anger. And then we have specific things that they can do, you know, they can listen to music, they can go play the piano, they can scream into a pillow, they can, you know, just positive coping skills.

And then, so that’s how we teach them to understand their emotions and identify their emotions. And then how to use the coping skill, we teach that when they’re feeling calm. So that when they’re in the anger moment, it’s just a natural thing that they can do rather than their mom or dad trying to be like, okay, now we’re going to do this and you’ve never done it before, but we’re going to do this now.

So that’s one of the ways that we use music therapy to help with emotions. You know, meltdowns and stuff.

And I could see how that, that would be a definite benefit. We, we always had music in our home and a lot of times it would be a silly way of helping to diffuse situations where there was one day I remember we actually, the two kids and I, we just sang opera to each other for about an hour.

Because, and everything that we felt we put into those falsetto voices, but it helped to, to allow us just to have fun by, by the end of it all. And it did relieve stress for me as a mom as well.

Yeah. I remember, um, just speaking about funny things. My. My. My. Sisters are a lot younger than me. They’re all in their early twenties, like late teens, early twenties.

I’m in my like mid thirties, you know, late thirties. And I was at my parents house. My sisters were being completely ridiculous and my mom was just done. And so she’s like, she turned on some Bon Jovi and just started dancing. And my sisters looked at her and they were like, what are you doing? And then they just started dancing too.

And we just had a dance party when before that everyone was arguing. And I just thought that was genius of my mom to do. She was just like, I’m done with this. And we are, and it relieved her stress. It relieved everyone else’s stress. And then they were able to talk about what, what the actual problem was after they had all just deescalated a little bit.

Right. And I think there’s so much value in that because it gets your whole body into it. It’s, um.

Yeah.

So one thing I did want to ask, I know when my kids were little, I would love to have had formal music therapy. I didn’t know it was even a thing. Maybe it was, maybe it wasn’t. I don’t know. But I’ve talked to so many parents are down syndrome community, artistic community.

It’s, it’s there. It’s an option now. So I don’t know if it’s new or not, but it’s there. But I know a lot of our parents that are listening, they may feel overwhelmed by the types of therapies that they have, because there’s so much, they have OT, they have PT, they have speech, there’s just so much going on.

There’s very little time for the family already. How can music therapy be incorporated into a child’s existing routine alongside all those other therapies?

I really like music therapy because it can pull from those different things. Like, I work a lot with occupational therapists and speech therapists.

I’ve co treated with them. So we use music therapy at the same time that they’re getting the speech therapy, or the same time they’re getting the occupational therapy. And music affects more of the brain than any other stimulus, and so it can really help. Build new neural pathways in your brain that you’re trying to build.

And so that’s what I think the biggest positive about music therapy is, is that it’s motivating and it can change your brain faster than other things can. And so I completely understand that, you know, parents and kids are busy. They have so many different therapy appointments, like my own kids. I feel like I’m constantly taking them to therapy appointments.

So if you can get a music therapist that works with your other therapies, I think that would be the best, obviously not working on the exact same goals because that’s not appropriate, but just being informed about the other goals and like helping with them. And I know I’ve worked with occupational therapists who say, you know, when you’re doing your music therapy session, if you could incorporate this to work on.

And strengthen what they’re learning in occupational therapy, you know, or. You know, these are the sounds that we’re working on speech therapy. Can you incorporate them into music therapy? And, and sometimes kids need a break from those other therapies and they can get music therapy in the middle of that, or just as like a fun therapy that I am not saying the music therapy takes the place of those other therapies, but sometimes kids get, you know, sometimes kids get burned out on music therapy and they need a break from music therapy.

So, um, I think it can just help. With those other therapies in conjunction with those therapies to build better results.

So our kids that are in public schools and listeners, I’m, I’m focusing as always on the U S school system, just because that’s where the majority of what we’re addressing is from a lot of times they’re getting their.

There are other therapies while they’re in school is music therapy and option would would have music therapists push into the school and be incorporated into part of the IEP team. How would a parent orchestrate all of that?

Yeah. In some states, there are music therapists in schools. Um, you, the parents just have to push for it by law.

The school has to do a music therapy evaluation if that’s what the parent wants, but the parents have to really push for it. I know in Idaho, there’s not music therapists in the schools because no parent has really pushed for it. But in other States, you know, there’s full time music therapists in the schools.

So it just depends on the state you’re in, you know, if other parents have paved the way for you. Um, but definitely if you want music therapy. They have to give you at least an evaluation.

Okay. So they would, so they would bring that to their IEP team.

Yes.

Okay.

Yeah.

Um, and I would think too, that they may be able to get some support from the OT or the PT that they’re already working with.

If they can find someone who is familiar with music therapy.

Yeah. Yeah, for sure.

So, um, So music, we’ve talked about how it can be motivating. It can be calming. It can help relieve some of the stress. Like the example of you and your sisters, well, your mom and your sisters, I guess you were just coming into it.

Yeah.

But not all parents feel like they’re musical or feel comfortable with that. Can you elaborate on the five musical coping skills that you focus on and how parents can use them at home?

Yeah. So the first one we’ve already talked about, it’s identifying and teaching. Emotions and parents can just do that by, you know, like we said, reading the book, writing the songs, and you can use garage band to write songs.

It’s a really easy way to write songs. It comes free on all Apple products. And so if you have an Apple product, whether it’s, you know, the computer. Or an iPad or a phone, whatever you have, it is on there. And it’s a really simple way for kids and adults to be able to just write songs together. And that’s what I found kids can really get into the music because it’s accessible to them.

They don’t have to play an instrument. They can just type on, you know, uh, Screen. So we can do that. And then the next one is regulating emotions through music. So I recommend making a playlist of anger songs, a playlist of sad songs, a playlist of happy songs. And there’s this thing called the ISO principle, where you start in, like, if you’re angry, You want to listen to angry music and then slowly go to the next emotion that you want to feel.

So if you want to feel calm, you don’t start out using calm music. You have to really feel the emotion, work through the emotion, and then you can go to calm music. So I really recommend making those playlists in advance. So when you’re angry, you can turn on the angry playlist, and then you can go to your calm playlist.

Once you, you like. You know, work through those emotions.

Right.

Yeah. And then the next one is my favorite. It’s just creating personal retreats through music. And this can be done by playing an instrument. And you, when I say play an instrument, you don’t have to know how to play the piano to do this on a piano.

And like, I’m just like using one finger. And if you’ve never improvised on a piano, I just recommend that you do, you start with one finger and just, you know, um, play the keys. With your one finger, and then you can use two fingers, one on each hand. And then you can move to, maybe you just put your hand on the piano and you just play the notes that your hand can reach without moving your hand.

And if you want to play with another person, I recommend playing on the black keys of a piano. No matter what you play, it’s going to sound good together. It just creates a certain scale that sounds good together. And you don’t have to be a musician to do that. You can just play whatever you want and you can play it together.

And that’s really co regulating with your child. So, you know, you’re calm, you’re helping them be calm. And it’s just a fun thing that you can do together. There are so many benefits of making music together. Like it reduces cortisol, it increases dopamine, it increases the bonding chemical. Um, yeah. So it can just, you can really create a good bond that way.

And. Help them regulate themselves. Um, some other things that we’ve talked about, you know, listening to music, dance parties, songwriting, you can get, um, templates online that have songs that are popular. Like I like to use imagine dragons. Um, and they have just, it’s kind of like Mad Libs. I don’t know if you’ve ever played Mad Libs, you know, like where you just fill in a blank word.

Yeah. So you can do that and you can make it fun where the person doesn’t know what the song’s about. And you’re just like, okay, give me an adjective. Give me a noun. Give me whatever. Or you can do it seriously and be like, okay, this is the, you know, this is the lyric, here’s the missing word. What word are we going to put in that place?

And then you can sing the song because you know the melody already. It’s a popular song and you just put in your own lyrics. So that’s something that you can do too. You don’t have to be a musician to be able to do that.

Is that something that we can link for parents to find?

Yeah, for sure. Um, I, I’ll give you some examples.

I’ll send you some examples of ones that I’ve used.

Okay, great. Great.

And, um, so there’s two other ones. The next one is facilitating communication. So if you have a drum, if your child is very angry, I recommend Drumming and drum talk where your child gets a drum and you get a drum and you just play with each other and They go back and forth.

So you’re having a conversation, but you’re not allowed to use your words. You have to use the drum I did this with some siblings who came into my office. They were so mad at each other They were just yelling at each other and just not being appropriate. They’re being very rude to each other I So I gave one of them, I gave them both a drum.

They sat in different corners and I said, you just have to communicate through your drums, pretend you’re having a conversation. And it was very aggressive to begin with. They were interrupting each other. They were not taking turns. And then towards the end, it got calmer. They were waiting to listen to the other person.

I told them, you know, when you’re done drumming, just stop. And then we’ll go from there. When they were done drumming, they were actually able to have a conversation together and we were able to talk about what the problem was. So that’s another thing that you can do. Um, and the last one we’ve talked about transitioning and music can just aid and transitioning.

I know for a lot of autistic kids, they have PDA or pathological demand avoidance where you ask them to do something and they go into fight or flight because you’re asking them to do it. You’re placing a demand on them where you can use music. to signal some, to signal a transition so you can tell them, okay, you can, you know, play your computer game when this song comes on or when this sound comes on, it’s time to transition to this activity.

So when it’s time to transition, it’s not you telling them it’s time to transition. It’s the music telling them it’s time to transition. And it can also help, you know, like with kids who just have a hard time transitioning. Um, they know when they hear that sound that it’s time to go to a new activity.

I know a lot of our classroom teachers will use that, that technique for the classroom instead of, or instead of flashing lights or yelling at the class, they’ll have a chime or a music that goes.

And I could see the benefit of that. Um, if we have any teachers that are listening. If you have a child in your classroom that has a hard time with transition, that’d be a perfect way to help them to, to kind of gear up to it. I know we w we would use things like that with our kids just cause it, I was going to be talking to, I was blue in the face cause they weren’t going to hear me to begin with, but having something that wasn’t mom’s voice, they could hear it better.

It just was an easier way for them to, to, to gear up for those transitions. And we would do two where they had like a 10 minute window. And then when the final one came, then they, they, they, they knew it did cut down on a lot of the arguments and the stress level on my part when they were young.

Yeah, for sure.

So, um, music can be really individual. You’re talking about Bon Jovi and. Imagine Dragon’s Knot, they’re very different, different styles of music. Children can have very specific choices in the styles of music that they like, and it may not be what we choose as parents. They may respond to something so totally different.

How do you adapt your music therapy approach to cater to a child’s specific taste and their sensory needs?

I do an assessment to begin with, and then I ask the parents, you know, like, what kind of music does this child like? What kind of music do they respond well to? What kind of music do they absolutely hate?

Sometimes you play a song and kids just freak out because they do. Like my sister, when she was like a one year old, she would cry every time Josh Groban was put on. And it was sad because Josh Groban was one of my mom’s favorite artists, but she would just cry. And so. Or do there’s some kids that don’t like words to music.

And so if you sing, they, they just shut down. And so that’s important to tell your music therapist, obviously. And then it’s just trial and error. You know, you have to try some things, but when you find the song that finally like, Hits with that person, then, you know, you know, you struck gold. Um, but yeah, it’s just asking, asking the kids if they can tell you what they like, you know, if they’re old enough to tell you, asking the parents and then just trial and error, so that’s what, you know, and then we, it’s the same with instruments, you know, sometimes there’s this one kid that I could not engage him with anything.

Nothing that I worked, nothing that I did worked. To get his engagement. And then I brought bells one day, just the desk bells. He was right there with me and he was able to participate and he was able to play the music with me. He loved it. And so it’s just, yeah, it’s just all trial and error. You just have to learn what works.

And as you know, you get more into the field, you kind of have a better educated guess about what’s going to work.

I know even for me personally. There are certain ranges of sound that are more pleasing to me. It’s the vibrations of it. Everything can be more calming. And then others, I can walk into a church worship setting and I can just feel the stress level rising because of the amount of bass or something that’s going on.

So I think we’re all. Sensitive to different vibrations that are happening around us. So I could see that being a little challenging as you’re trying to figure out. Um, and, and hopefully if you’re in a group setting, you’re not setting off one and calming another.

Yeah. Groups are hard. So,

yeah, I, I, I could see that.

Yeah. Yeah. So when we do groups, we try to pair groups according to their musical, you know, um, Like what they like in music, their developmental age, their chronological age, um, so group groups are definitely hard because then you get kids that are super loud and then you have another kid that I just had this happen.

I walked into a group. I was not in charge of registering them. I was not in charge of putting them together. This facility just asked me to come and do a group and there were kids in there that were very sensitive to sound. And then there were other kids who were sensory seeking and they were very loud.

It did not work. So that’s just something to be aware of when you’re putting groups together. You have to be aware of what everyone’s saying.

Well, this, this season I’ve, if you’ve been listening listeners, you, you’re aware of this already, but for season three, we’re going through having each guest share some words of wisdom by completing an open ended statement that I give them. So I’m going to start the statement and then I’m going to have.

You repeat that, what I say, and then complete it with your own thoughts. So I know that was kind of convoluted the way that I just presented it, but, but I think, I think we got it there. Yeah, we got it. So I that I’m going to give you. And, um, and if you need me to repeat it, then I can, I can do that. So the first one is the most surprising thing I’ve discovered about using music therapy with neurodivergent, and let me try that again.

My mouth isn’t working today. The most surprising thing I’ve discovered about using music therapy with neurodivergent children is.

The most surprising thing I’ve discovered about using music therapy with neurodivergent children is how different kids are and how one piece of music can do one thing to one kid, and it can totally change in another kid.

So just knowing that. Musical preferences like we’re talking about just are so important.

Okay. Next one for parents feeling overwhelmed by their child’s challenges. I want to emphasize that.

For parents feeling overwhelmed by their child’s challenges. I want to emphasize that there is help out there. You can reach out to music therapists.

You can reach out to parent educators, occupational therapists, whoever you need and to really see what your child is into and focus on that connection piece before correcting your child. Really focus on connecting with them, engaging in what they like, and really building that bond. And I think you’ll see a difference.

Excellent. Excellent. Very nice. Okay. Third one, one key skill every parent of a neurodivergent child can develop through music is?

One key skill every parent of a neurodivergent child can develop through music is, um, learning coping skills. You can, you know, like we talked about, you can use coping skills using music and you don’t have to be a musician to do them.

Right. When a parent tells me their child is struggling with blank, I always recommend trying blank.

When a parent tells me their child is struggling with going out in public, I always recommend trying to look at the sensory needs of their child. Like, are they sensory seeking? Are they sensory avoidant? Do they need, you know, headphones? Do they need sunglasses? That’s just one thing that you can try is really looking at the sensory preferences of your child.

Great. Great. All right. And the final one, the future of music therapy for neurodivergent children holds great promise because.

The future of music therapy for neurodivergent children holds great promise because it’s growing. More people are hearing about it. More people are engaging in it. There’s more research being done. I am just super excited about it.

Those are all great advice. I, I, I’m, I’m glad I, I gave you all, all five of them instead. Instead of just three of them. .

Oh, yeah. Well, thank you, .

Well, well done. Thank you.

Thank you. Thank you.

Can you tell us about any projects that you’re working on and how our listeners can connect with you?

Yeah, I am. Starting parent coaching. And so we’re starting parent courses where it won’t be all music therapy. It won’t be all music, you know, strategies, but there will definitely be music strategies mixed in there. So if you’re a parent who’s new to the neurodivergent world, if you’re a parent, who’s.

Maybe their child doesn’t have a diagnosis yet, but you’re just thinking that your child is neurodivergent or you just got a diagnosis. Um, we really delve into what is involved in the neurodivergent world. How can you help your child, you know, focus on positive parenting strategies and music strategies when appropriate.

And if you want to connect with me, I have a podcast called every brain is different where we celebrate neurodiversity and we give parenting strategies to parents. Um, I’m on Instagram at Boise music therapy. I’m on Tik TOK. Every brain is different. Um, yeah, just connect with me there.

All right. We’ll, we’ll include all those links in the, in the show notes.

And if you’re listening on audio, look at the webpage that’s that’s linked there, because I’m having trouble getting the show notes posted on the audio platforms, but it is on the webpage that that is showing up on that. So you’ll, you’ll be able to find it. Well, Samantha, thank you for sharing about your work today.

I’ve learned a lot and I know our listeners have as well.

Well, thank you for having me on. It was really awesome.

The post Episode #92: Music Therapy & Positive Discipline Strategies for Neurodivergent Success appeared first on Water Prairie.

In this episode, Kristin & Todd Evans, authors on marriage with disabled children, share their struggles and winning strategies. Open communication, avoiding assumptions, and professional help are key. Self-care, shared responsibilities, and celebrating small victories strengthen the bond. Though challenging, marriage can thrive with effort and support! Their book offers tools for couples on this journey.

Find the full directory at waterprairie.com/listen.

In this episode, Kristin & Todd Evans, authors on marriage with disabled children, share their struggles and winning strategies. Open communication, avoiding assumptions, and professional help are key. Self-care, shared responsibilities, and celebrating small victories strengthen the bond. Though challenging, marriage can thrive with effort and support! Their book offers tools for couples on this journey.

Connect with Kristin and Todd:

To preorder the book:

Learn more about Kristin’s story: https://youtu.be/ZcMPo8sQBU0

Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

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/

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

Raising a child with a disability can be an incredibly rewarding experience, but it can also take a toll on a marriage. The constant stress and strain can lead to communication breakdowns, resentment, and feelings of isolation. But there is hope! In this interview with Kristin and Todd Evans, authors of the new book “How to Build a Thriving Marriage as You Care for Children with Disabilities,” we learn valuable strategies for building a strong and supportive relationship. (See the full transcript of the interview below.)

Building a Support System: You Are Not Alone

Kristin and Todd emphasize the importance of building a support system for yourself and your spouse. Feeling isolated can exacerbate existing problems. Look for online or in-person support groups specifically for parents of children with disabilities. Reconnect with old friends, or seek out new connections at therapies or conferences.

Communication is Key: Avoiding Assumptions and Building Trust

Disagreements about treatment approaches or parenting styles can be a major source of conflict. Kristin and Todd advise couples to communicate openly and honestly. Instead of jumping to conclusions, assume the best of your partner and believe that they have their child’s best interests at heart. If you can’t reach an agreement, consider seeking professional advice from a therapist or specialist.

Shared Responsibility and Respectful Delegation

It’s likely that one parent will take on the primary caregiving role due to appointments, therapies, and research needs. This doesn’t mean the other parent is uninvolved. Discuss childcare responsibilities openly and decide what works best for your family. The key is mutual respect and trust. If one parent is the primary researcher, the other parent can defer to their expertise when making medical decisions.

Finding Joy in the Journey: Self-Care and Celebrating Small Victories

Chronic stress can take a significant emotional toll. Prioritize self-care activities to avoid burnout. Schedule date nights, even if it’s just a quiet evening at home. Remember, a healthy and happy parent is a better parent. Don’t forget to celebrate the small victories, the moments of joy and connection with your child and with each other.

Marriage Isn’t Doomed: Building a Stronger Bond

The statistics may be daunting, but Kristin and Todd debunk the myth that marriage is doomed when you have a child with a disability. With focus and effort, couples can build a stronger and more fulfilling relationship than ever before. Their book offers practical tools and exercises to strengthen your communication, manage stress, and build a foundation of trust and mutual respect.

Remember, you are not alone on this journey. By building a support system, communicating openly, prioritizing self-care, and finding joy in the little things, you and your spouse can create a thriving marriage and a loving, supportive environment for your child.

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Todd and Kristin Evans are award-winning authors, speakers, and special needs parents. They are passionate about helping other special needs parents thrive in their faith, marriages, and mental health. In their new book, “How to Build a Thriving Marriage as You Care for Children with Disabilities” (Baker Books), they help couples build the tools they need to strengthen their marriages. Todd and Kristin have served together in fulltime church, adventure challenge, and retreat ministries. Kristin is a Licensed Master Social Worker experienced in Christian, family, couples, substance abuse, and crisis counseling. Connect with Todd and Kristin and explore their many free resources at DisabilityParenting.com.

Full Transcript of Interview:

Todd Intro Clip: For couples facing the challenges of raising children with disabilities, the most important thing to remember about the relationship is that your relationship is the foundation of everything that everything else that you do in life is going to flow out of that. So, if it’s cruddy, probably the rest of your life is going to be cruddy too. So, put in the time and effort to make that relationship good.

Tonya Voiceover: Do you ever feel like your marriage is taking a backseat to your child’s special needs? You’re not alone. Many couples face incredible challenges when raising a child with a disability. But what if I told you your marriage could not only survive but actually thrive? In today’s interview, I’m talking with Kristin and Todd Evans, authors of How to Build a Thriving Marriage as You Care for Children with Disabilities.

They’ll share their own story along with practical tips and strategies for strengthening your relationship and rediscovering the joy in your marriage.

Tonya:  Todd and Kristin, welcome to Water Prairie Chronicles podcast today.

Kristin: Thank you so much, Tonya. glad to be here.

Tonya: So, I’m really excited to have you both here.

Kristin and I met in season one when she came on to share her own personal story. And there was a change in ministry happening at the time. And that’s why I’ve been looking forward to meeting you Tide, because I knew that both of you were moving in a different direction and listeners, if you’ve met Kristin before, or if you didn’t go back to see episodes 23 and 24, she shared her story there and she also shared some cool tricks and tips for helping your child stay consistent on schedule.

When their own breaks, whether it’s weekends, the holidays, or over the summertime. So, she really had, had some great information during those. But today we’re going to be talking about this new ministry. Todd and Kristin have a book coming out soon, and I’m really excited about this. I got a chance to see it, so, I’m going to hold it up here.

They can tell us more later, but I’m going to be digging from this and some of the questions that I’m asking them about. And first of all, Todd and Kristin, you did a wonderful job on this. I really enjoyed going through it myself and there’s so many tools within this. So, I’m looking forward to sharing just a little bit of what I’ve learned and digging deeper with it, but then also to have you share at the end with it.

So, listeners stay, stay with us. Cause at the end, they’re going to go into a little more detail about the book itself. But, um, but one thing that I noticed when we were going through it, we, we just kind of described the caregiving a little bit, but you mentioned at the beginning of the book that this adds a strain to marriage. Can you explain why that’s an added strain to a marriage for those that are caregiving for others?

Todd: I think from every perspective, it’s, it’s more of a strain. You know, we each have a kind of our own perspective and kind of view on the past. Um, for me, it was especially, you know, my kind of roles in the family were very much the financial aspects.

Um, so, the strain of, of, you know, having to care, um, for another individual that has lots of medical expenses and medical needs and all kinds of machines therapies. Um, so, that’s a strain obviously from, from my perspective, uh, as well as just time, um, for both of us really, that, uh, there’s just so much caregiving and so many things you just have to do that there’s, uh, just whittles away the time that you have for anything.

We considered normal in our marriage before that, you know, being able to go outside and walk together or bike or, um, you know, go out to the park or something, you know, all that just kind of changed with a lot of our circumstances.

Kristin: Yeah, and I’d say 1 of the biggest factors is whatever type of special needs or disability your child or sibling or parent has, um, that adds stress in different ways and added stress on the person.

Impacts the marriage, the added stress can create mental health symptoms. A lot of parents, uh, who have children that have had some kind of crisis, whether behavioral, medical, mental health have, uh, post-traumatic stress disorder, at least 20%. So, one parent is stressed, like Todd said, with finances or just trying to keep his job and make life work.

I’m stressed emotionally. And that stress on this individually really stressed our marriage. Um, and stress also does things to your body, um, that makes it difficult to connect physically as a couple. So, it, you know, the list could go on.

Tonya: Well, you mentioned in the book that the stress is there. We recognize that, but that can also allow for a deeper intimacy in the marriage.

How, how does that work?

Kristin: Working through learning how to work together to problem solve these very complicated problems, learning how to grieve together, learning how to manage stress together, learning how to find meaning and joy. In the present day and present moment, um, actually helped us create much deeper intimacy and growth as a couple, because we had those very difficult.

Dark days. Um, and once we began, now we did not do this at first.

Todd: We struggled. So, at first, it was more like a wedge.

Kristin: The first part of the book is us struggling. We have struggled. It

Todd: drove

Kristin: us apart. It can either drive a couple closer together or drive a wedge, any of those things. Um, and once we began to learn how and develop the skills, To work through that together, um, going through that emotional pain, those sometimes just seemingly crazy, probably the complicated nature of the problems we have to solve that shared misery ever heard, you know, shared misery it, it gave us this, um, opportunity to grow closer and develop a deeper connection than we could have otherwise.

Tonya: There is a chapter in the book about stress management. So, I wanted to ask, could you share some tools that you found that helped to strengthen your marriage? Maybe give an example that our listeners could try themselves.

Kristin: I think it’s both. Individually learning to regularly de-stress on a daily basis and coming together and de-stressing relaxing as a couple. And for me and research shows for a lot of women, we have to, it takes a little bit more for us to de-stress and we have to continually find ways to do that throughout the day that men do.

But, um, it’s very important to do both. So, one thing, um, that we started doing. About eight or nine, maybe nine years ago is encouraging each other to care for ourselves more. And this is so hard for caregivers. Some people literally cannot get out of the house. And we understand that there were a couple of years, Bethany Grace was medically fragile that I didn’t, I didn’t get out of the house.

Um, but we started encouraging each other and sacrificing so the other person could get out and go jog. Um, Todd signed up for a half-iron man. Uh, I thought he was crazy at the time, but, um, you know, it took creative work to give him the gift of saying, no, you need to go run your business. today. You know, I got it.

Um, so, that was part, both individually finding ways, um, to de-stress and then as a couple.

Todd: Yeah. Um, yeah. Learning those skills and you kind of take it for granted, you know, all the time when you have that spare time and can do them and just kind of go out and do them. But, um, but yeah, the individual things, you know, Kristin was great about, um, saying no, take, Go take 30 minutes or 15 minutes, whatever, get out and, uh, and do that.

Um, but then also, like she was saying that it’s important to find ways together to, um, a lot of that does build, um, a sense of togetherness because the other person’s sacrificing for you. So, that, that does build your relationship. Um, but, but finding ways together and I’d say probably the biggest one for us, um, That, that means a lot to me and still does is that we kind of have a unwritten pact, um, that every night we work together, um, to get our daughter to bed and do whatever else we have to do.

And then we kind of crash at the same time in the bed. Um, so, it’s not like one person is overburdened trying to do something. So, it may be, you know, nine o’clock one night, it may be 10:30 another night or, or later, but, um, we keep working kind of together on what has to get done. Uh, but then we kind of crash in the bed together, um, usually try to watch a funny show.

That’s another big piece of de-stressing for us is, is watching a, uh, you know, one of the late night comedians who recorded from the night before. I can, we’re not staying up that late, but, um, or some kind of funny sitcom or something, um, that gets us laughing together. Um, and then we turn off the lights and say goodnight to each other.

And that’s kind of a routine and a rhythm for us that, uh, that just every night I know, uh, I get to go to bed with my, with my love and, and, um, get to just close the day out together. And then for us, that’s a way of de-stressing, um, all those things together.

Tonya: I like that. And that, and, and I like the example too.

It can be as simple as watching a show together. It doesn’t have to be. That you’re going out to a movie and getting a babysitter and trying to, to figure all those pieces into play as well. The, um, and I noticed when I was going through, you do have tips throughout the book, which is nice because you give a lot of, a lot of good things that, you know, The readers can pick and choose what they want to pull from that.

And, um, you had, you had some surprising ones in there that I never would’ve thought of. So, so,I thought, I thought it was, it was good. One of the things that I wanted to ask about, and we’ve talked about this before with some of our other interviews, but how important it is that we build a community around ourselves.

And, you know, I think those that are listening who are parents, they recognize how isolated you can feel sometimes. You may not feel that you can leave your child. If there’s a medical issue, or you may not feel like you can take your child with you, even as simply as going to the grocery store, because sometimes it’s just too hard to do those things.

So, our parents can feel isolated. How can we help them combat those feelings of loneliness? Any suggestions on that?

Kristin: Yeah, that that is a big one. And it’s so, so important for so many reasons. And especially if you live, um, further away from a major city, it’s probably even harder, uh, especially to find a church, um, that might have a special needs ministry or respite program or something like that.

Those are easier to find. Obviously, um. The closer you are to a larger, like we live 10 miles South of Nashville. And, um, I would say just keep trying, just keep trying to find support. Um, whether that’s, if you go to church and they don’t have a special needs ministry. We don’t like to ask a special needs parents for help.

And even when people offer a special needs parents, we don’t like to accept. But. We have to. That’s just basically what it boils down to, to lower our stress, to give us that emotional support, to make it possible for us to get out of the house together or have a moment together alone at home as a couple.

Um, we just, we have to. So, I would say If you feel alone, um, a lot of people don’t have the support of their family and maybe even friends they used to have, uh, or they’ve been, they’ve left a church, um, that happens a lot when they have a child with disabilities, I would say just keep trying, just keep asking for help because without that support, emotionally, practically, um, It’s almost impossible to thrive as a special needs parent

Tonya: When our children are first diagnosed, we’re just overwhelmed where, and there’s a lot to do.

So, I think it sneaks up on you that, that, that loneliness and isolation. Because you’re so busy keeping the appointments and you’re working with doctors, you have interaction with people, maybe not for yourself, but just in learning how, how you’re going to survive, and what those next steps are. So, maybe it’s been a few years, maybe they have a preschooler now.

And things are more at an even level. But as you say, maybe they don’t have those friends anymore because they haven’t been able to stay connected. Um, maybe they’ve, maybe they’ve not been able to go to church and they’ve been away for several years. Is it okay? Cause I’m thinking we may have someone listening who needs to know that they have permission to do this.

Is it okay for them to call up that friend again and try to reconnect? Is, is that something that you’ve seen? As you’ve ministered to other couples that they can, that it’s easy to reconnect. Or is, is it better to try to find totally new venues of where they’re going to find those, those connections?

Todd: I think really, it’s a, it’s a both-and thing.

Um, I think for sure to reach out to those, um, what we found and talking with people, and in our own experience, too, is that oftentimes those friends that have kind of become distant often that distance is created because they just don’t understand your situation. They don’t know how to be in your life.

And so, it’s easier to not connect than it is to ask those harder questions or then be you often find they’re afraid they’re going to hurt your feelings. If they ask about something, they’re going to say something wrong about your child or you and so they’re afraid to reach out oftentimes. So, if you take that 1st step, a lot of times that just opens the communication and can.

reinvigorate things with that relationship. Um, so, I’d say definitely, um, reaching out to maybe some people around you that have been close in the past. Um, I think there’s something that connects us all when we have something shared in our past that it becomes much easier to reconnect with just a little bit of effort.

Um, but also, uh, this is the both-and part is, you know, there’s a whole other community out there that you can connect with. Um, just thinking about going to therapies. Um, you’re sitting there with other parents in similar situations that may just be quiet because they’re exhausted or something else. But, um, if you can start up a conversation, um, that can be somebody you can text with or talk to when a, when a hard day happens, uh, to build those relationships.

Um, or there’s so many, um, other people out there that are struggling in similar ways that we don’t see each other. Uh, we don’t cross paths often because oftentimes we’re stuck at home. We’re not in the normal channels of, um, community events and, and sports and things like that. Um, but you know, for our daughter’s syndrome, there’s a whole society out there that, um, meets yearly.

Um, so, we on

Kristin: Facebook

Todd: and on Facebook. And so, we try to connect with some of those people and reach out and kind of get creative in that way and find other parents that are going through similar things. It may be the same disorder or disability, or it could be something totally different. Um, but you have that shared, um, experience of, of raising your child or helping your parent or your sibling.

Uh, and you can find them and build those relationships quickly because you have a shared core of what you’re going through.

Kristin: Even if your children have.

Todd: Um,

Kristin: and I will say I isolated for the first, probably, I don’t know, three years. And that almost didn’t turn out well, if you listen to my story and other podcasts.

Um, but it, it, it is scary. I will say it takes vulnerability. It takes energy, which special needs parents don’t have the thought of mustering up the courage and the energy to call or text someone. Um, even another special needs parent, it’s scary, but I would just encourage you, if you are listening, to do it. Pick up the phone, text. If you’re sitting at that therapy appointment and the other parent is quiet, they are probably going to be so glad if you strike up a conversation. They really are. Um, because connecting with. Other parents who are caregivers and sharing and, um, supporting one another actually rewires our brains as caregivers.

I’m a research nerd, and that was the coolest journal article I, I ever read. It really does. Um, so, I just encourage you to muster up that courage and energy. To connect with another parent.

Tonya: So, as you’re saying that I’m thinking back through the last two and a half years, and we’ve featured several different types of organizations.

So, if you’re listening and you have a child with Down syndrome, we’ve, we’ve covered Gigi’s Playhouse. You’ll see with that, that you have a huge group of other parents who completely understand where you, where you’re coming from and have advice to help you. We have even the Miracle League baseball program, any child that’s Who’s listening will be able to participate in that in some way, shape, or form.

And what I love about that type of environment, the parents sitting in the stands, that’s where I got the biggest value. My husband was coaching. My daughter was playing. My son was a buddy. I was sitting in the stands cheering on the team, but I met the other parents and not a single one of us had the same issue that our child was facing.

But we all understood therapy appointments. Well, all understood working on IEPs in school. We all understood trying to find friendships for our children. Where they could actually be their true authentic self and not kind of feel like they were on the sidelines. And so those conversations were great with my daughter, because of her visual impairment, we got involved with a group for the blind that were playing the sport of goalball.

And that became her favorite sport. It was a safe sport she could play. And as we’re sitting there, not saying anything because it’s a silent sport. The kids could hear the ball, but we were whispering, All of these ideas though, that we were having and what we had tried or, and adults would come to watch who were blind and they would then share with us what their journey had been.

And so a lot of what I was learning as a parent was from those interactions. So, parents listening, there’s a lot out there, but if you feel like you don’t know where to even start. Send us an email. We will get you connected with someone wherever you are. There’s, there is a way to get you in there. Even if it’s a Facebook group to get you started.

I did want to talk a little bit about team building. We talked earlier about how those shared stresses can kind of draw us together and trying to build that community and all, but you address in the book, some of the. Challenges, maybe we’d say there are stresses, but they’re also challenges. And some that I thought of, as I was thinking of that were parenting styles.

So, he and she may have different ways of, of how they’re going to do it. You actually give an example in, in, I think it was chapter 11, uh, which, which was really a cute, cute intro. And I could see that happening in every family around the country, but then also you might have treatment approaches. One may be all for trying the next research method and the other one may be hesitant to try even a supplement.

So, how do you navigate those differences and, and keep your relationship strong?

Kristin: And to throw in there, typical parenting, uh, styles, techniques, discipline, don’t work with the child who has special needs. So, you throw that into the mix and, you’ve got, you know, Uh, an environment that just is going to breed conflict in couples.

Tonya: And if you have more than one child, parenting for those two children is going to not, and in a typical family, they’re not going to be the same, but they’re going to be closer to being the same than they would if we’re talking about a child with extreme needs and a child with maybe other extreme needs.

A lot of our families do have multiple, um, issues that they’re facing with, with different children.

Kristin: It gets complicated. I’ll let you take that one.

Todd: it’s kind of, so, it’s, we struggled with that, and we hurt each other quite a few times. Um, and just really got mad at each other and, and, said some mean things and you don’t care about our child.

I think we’d said those phrases multiple times, the different things. Um, and we finally kind of came to this realization. We both love our child and that is the most important thing and realizing we may have different approaches. Um, so, we had to talk this out and literally say this out loud to each other.

I know that you are thinking the best of me and for the best of our child. And. I’m going to keep that as my foundation. And if I know that, um, I know you’re always to think in short, think the best of your partner, um, and that they are trying to do their best and their situation that they can. And that foundational piece helped us, um, tremendously to not get so frustrated at one another, to think back to that, that we may not agree, but your heart is there, you’re thinking the best.

Um, And I’m going to think the best of you and I’m not going to jump to conclusions that you don’t love our child. You don’t do any of this stuff. Um, and that, that helped, um, kind of get us in the, in the right direction to, to working together better.

Kristin: And I, I think 2 other main things, um, 1, if we can’t come to an agreement, um, like we could not come to an agreement, um, about a certain, uh, treatment or care need getting a professional opinion.

Because it’s, then it’s not you telling each other, but you’ve got someone who’s an expert in it and working with children and diagnosing this, um, a lot of times hearing it from that expert. Whichever parent is hesitant or, you know, not on the same page, um, will that will help them understand more and maybe get on the same page.

So, I would say definitely like, with behavioral and discipline, and you just can’t figure out how to parent your child, um. It is worth the time and, and the resources, if you, if you can at all possible, um, spend them this way to get a behavioral specialist, because that is the parenting piece is a huge stressor on the marriage.

Huge. Um, and that breeds a lot of conflict. The worse the behaviors of the child, the more stress on the marriage. Um, so, I would say definitely the professional, uh, help. The other thing is it’s, it’s, it is very unlikely that both parents are going to be caring for the child the same percentage of the time now.

Occasionally that happens. Uh, but typically there is a primary caregiver who takes the child to the therapies. The appointments are at home with the child with either behaviors or medical needs. Someone is taking that primary role most likely. Um, and that. that in general has been me, um, ever since the kids were young.

And, you know, and I was doing all this research and, and so concerned and trying to present it to Todd and, and he just dismissed it and yes, it was very hurtful. It did do a number on our marriage and that, that was, that was one of the moments I look back to that really we’ve had to heal from that.

Um, but what he has given me is learned that, okay, you are the one who goes to these appointments. You’re the one who’s doing the research talking to the doctors. I’m going to defer to you. And

Todd: I’m still going to stay engaged, but I will defer.

Kristin: Exactly. So, like, if there’s a medical care decision, you know, that needs to be made, I’ll kind of be like, okay, this is what’s going on.

What do you think? And we’ll talk about it, but at the same time, he’s going to trust me to have more experience in the knowledge to kind of defer to me to maybe make that decision while I gladly defer to him about finances and that’s one of the things that we talk about in the book is if, if we both did everything, we’d never get anything done.

Um, so, I would say definitely that thinking the best of one another. Entrusting your spouse, that they have the best interest for your child.

Tonya: Kristin, earlier you referred to mental health and we did, we talked a lot about this during your first interview, but I, um, I know a lot of our parents are going to be coming from a perspective of dealing with depression.

You mentioned the PTSD and I’m glad that you did because I don’t know that every parent calls it that, but we have a lot of parents who have that level of trauma that they’ve worked through and it’s not that they have a child that’s trying to harm them, but just the situation that they’re in can cause that level of stress.

So, some of them may have shame involved with trying to get help. Do you have advice for them beyond just calling a therapist, but how do they get past the hesitations they may have and to the point of being able to begin healing and to get the strength that they need?

Kristin: I think just realizing, first of all, if you are struggling with depression, anxiety, um, clinical levels or not, I mean, subclinical levels of, of trauma, you’re in the one in three of us, which I think is actually low.

It’s one, it’s about 33 percent that report of a special needs parents that actually report. that they’re struggling. So, I know there’s a lot more out there. Um, there is nothing wrong with you as a parent or a person. It is the chronic stress that you are under and the trauma that has caused this and the, and the chronic grief as well.

We, as special needs parents experience chronic grief, you combine all that and it is the perfect recipe for becoming depressed, which I was that I, I share about, um, and I did not seek help, uh, until I think Bethany was 16 months old, which was way too late, um, because I had already started experiencing the trauma, even during the pregnancy and delivery.

And then she was in the NICU and, and it doesn’t have to be medical trauma. Bye. It can be the behavioral, it can just be the effects of the daily chronic stress, but I would say that what finally, and Todd didn’t understand, and we talk about this in the book, he didn’t understand, he didn’t support me going for help, uh, for a lot of reasons.

Logistically, financially, he just, he just didn’t understand. And so your, your spouse may be saying, just think your way out of it. Just,

Todd: just suck it up.

Kristin: Do her bolus feed and her feeding tube stuff without getting emotionally sucked into La La Land, which it just, it was a stress response. So anyway, the thing that finally hit me was I had to not care about what other people thought I had to put myself first because if I didn’t, I wasn’t going to be there and be healthy.

to care for my child. And I think that’s what a lot of us moms, especially we have guilt. We have mom guilt. We feel like we’re not a good enough mom. We feel like we shouldn’t spend time on ourselves that ultimately in order for your child to be the healthiest and well-developed child, they can possibly be.

We have to be our healthiest and that’s what it boils down to is deciding I want, I want to be the best version of me for my family and I deserve to be healthy emotionally. And, um, I need to take this time to go care for myself, whether it’s just going to counseling, to grieve, to vent, to have somebody that you can talk to and not feel judged or, um, you know, afraid to talk to you.

So, I just want to encourage you, if you’re listening. And, um, you are struggling, especially if you are in serious depression. Um, don’t wait, don’t wait until things calm down. Don’t wait until, Oh, things won’t be as stressful next month because you won’t go, you know, um, you know, take a step today to go get that help.

Tonya: We’ve talked about some of the stresses. We’ve talked about some of the, just the strain that can be on a marriage, but I want to finish by talking about some joy. Because there is joy there. Parents are listening. If you’re in the middle of the stress, there is joy there. And I know Todd and Kristin well enough to know that they would also agree with that.

So, do you have any words of wisdom for our parents who are in the challenging times of how they can find joy and connection in their marriages?

Todd: Well, I think one thing to kind of realize is that joy doesn’t happen overnight. Um, you can’t just say I’m going to be joyful or anything else and will yourself into it.

Um, You, you have, it takes a sustained effort to work at it, to get to a point when you look back and you say, I’m a lot more joyful than I was. A month ago, a year ago, 10 years ago, and in different stages along the way. Um, so, that’s one of the biggest things. Um, but it’s finding joy in the little things.

Um, there’s all this stress of our daughter. Um, but there are some just absolutely beautiful moments where she just rocks our understanding of the world. Um, the things that we think are important or whatever, you know, she’s, Doesn’t care about, but yet she can bring out this joy of the, of the simplest things, you know, and when we see that in her, uh, and take a moment to stop in our own lives and just say, you know, all this other stuff doesn’t matter.

Um, let’s just have joy in the moment and enjoy this little thing, um, whether it’s, uh, looking at a flower outside or, um. Every time we see a, you know, a rose or other flower going by and smelling it. Um, you know, just yesterday, you know, we were a little bit stressed out about things and a lot going on right now in our lives and taxes do.

Um, but you know, it’s like, all right, Beth, let’s get in the car. We’re going to go to the dump and then we’re going to go to the tractor supply company. I had to return some stuff, but you know, what was it? The tractor supply was chickens. So, little baby chickens. Um, so, just to. Take that extra five minutes.

It took to put her in the car, um, and another five minutes to get her out of the car and, and, uh, into the store and, and everything, but, oh, she was just shaking, um, she was so excited. And to hold her hand while she was shaking, just anticipating the chickens coming, you know, walking across the parking lot and going inside, um, there’s moments like that, that, that are just.

You can’t, um, replace with anything else. There’s nothing else more joyful in life and those kinds of things. Um, or it’s working through with your spouse. Um, like we’ve said, when you get through something together and they’re there to lean upon and to listen and to. Be there to support you. Um, that’s, that’s one of the foundations of joy is, is knowing that long history of, I have someone that loves me and cares for me, and I’m going to be that to them and they are that to me.

Um, and that builds joy. Um, so, those are a couple of key ways of, doing this is really appreciate the little things and just. Continue to work with one another and value those times. Don’t just, uh, don’t just try to struggle through it. That’s what we did the first couple of years really was, it was more like a, something we had to bear through and that we kept hoping things are going to get better.

And we had to come to that realization that. This is the way life is, and we’ve either got to accept it and, and find a way to enjoy it and be a part of it, or we’re just going to feel worse and worse and degenerate into something that we’re not happy with, with ourselves,

Kristin: which we did. Yeah. But as he alluded to, we began to, um, realize that.

Joy is not about circumstances. It’s about choosing to live in the present day and being grateful. And some days it’s hard to find something to be grateful for. Maybe. Um, there were, there were years that if both of our children were not in the hospital and we were all home together, that’s all we need in life.

I mean, that’s still true, but there were years that literally trying to find something we were grateful for. Was we have a new morning together as a family. Bethany and Grace is smiling no matter what’s going on and just taking those special moments to celebrate and enjoy life together and just express gratitude.

Tonya: Well, we’re going to change gears here a little bit this season. I’m asking my guests to share some words of wisdom by completing some different statements. And because I was interviewing two people on this one, I thought it might be easier if I gave. It to them to decide which ones to say, because I wasn’t sure how I was going to direct it.

So, I sent Todd and Kristin a few statements for them to choose from. And, um, would you mind sharing those with us now?

Todd: Why don’t you go ahead? Oh, okay.

Kristin: Um, all right. We wish more people understood that raising children with disabilities has taught us the profound importance of. I feel like I kind of just said that, but I’ll elaborate just on living in the present day because, um, truly that is, that is where we are going to find meaning, um, and joy and purpose.

And, um, you know, we have to plan for the future, obviously, especially for our children. But at the point we’ve done all we can do to plan, Uh, it kind of becomes counterproductive and it starts to increase anxiety. The more we kind of spin our wheels. Um, so, I just, I would encourage people to just take a deep breath and look around at what’s going on in the moment and just be in the day.

Todd: Well, for couples facing the challenges of raising children with disabilities, the most important thing to remember about the relationship is that your relationship is the foundation of everything. That everything else that you do in life is going to flow out of that. So, if it’s cruddy, probably the rest of your life is going to be cruddy too.

So, put in the time and effort to make that relationship good. That even if that means, um, taking some time for yourself as a couple, um, you know, there’s times where we might’ve felt guilty, um, given our child a, little bit too much time. Preferred activity like a, uh, what do you call it? Tablet, um, and, and she kind of felt guilty about the screen time, but we need 30 minutes.

Um, that our child can sit on the couch, look at the tablet that we can just kind of. Have a time to watch a show together or to cook together or do something, um, and not feel guilty about that because your relationship is that foundation. You’re going to be better parents, you’re going to be better work in your workplace or whatever other environments you’re in.

If your relationship is healthy and growing.

Uh, then another one here, um, One tool that’s been the most effective in helping us navigate the stress of caregiving and strengthen our marriage is I mentioned it earlier, but it’s thinking the best of each other. Um, that, that really is one of the core things that we do for each other. Um, is I’m not going to talk down.

I’m not going to undermine or say, “why did you do that?” You know, I can’t believe you did that. What were you thinking? You know, those, those phrases have gone out of our, out of our vocabulary. Um, and instead it’s things like, “I don’t understand why you made that choice. Can you tell me more about it?” Um, or it’s other times saying, “you’re a really good mom. You really love our kids.” Um, and supporting one another in each of those ways, because I know that is your true heart and just reinforcing that in each other has been a huge tool for us.

Kristin: And the message of hope we want to leave listeners today with is your marriage is not doomed. The 80 percent divorce rate statistic isn’t true.

It is not founded on research. And as we spoke about earlier, by learning new skills and recommitting to your relationship and thinking the best of one another, You could actually build a deeper marriage relationship, a stronger marriage than you could ever have imagined.

Tonya: Excellent. That’s, that’s fantastic advice.

I appreciate you both taking the time to, to read through those for me. And, um, I know our listeners are going to really get a lot out of what you’ve shared with us. The thing I wanted to talk about now was we’ve, we’ve alluded to your book in and out of this whole interview. And I wanted to give you a chance to tell our viewers and our listeners about What you wanted to share about the book, but also how they can get their hands on it.

Kristin: Yeah. So, the first thing we want to share is we know you don’t have time to research one more thing and to read a book that’s wordy. Um, and it’s hard to get nuggets out of. So, the way we have designed our book, how to build a thriving marriage, as you care for children with disabilities, it’s very practical.

Um, As I said, I’m a research nerd. It is based on research, but you would not know it if we didn’t tell you because we boil it down to one simple phrase of do this and this is going to help strengthen your marriage and then we give some practical, practical ways to do that at the end of every chapter.

Um, there are. Uh, exercises that you can, um, pick one to do together to commit to strengthening that part of your marriage or building that skill. And, um, yeah, so you can, it’s not a book you just read through.

Todd: Yeah, we’ve kind of designed it as our thought, kind of in writing the whole thing was, um, what is this marriage survival guide?

Um, how do you survive a marriage when you’re raising children with disabilities? And so thinking about a wilderness trip, um, that you might have this book with you and you come upon this thing, a snake or a bush or, and you flip to the right page and say, all right, how do I deal with this situation?

That’s kind of how we think about our book. Is it, um. There’s some key skills that when you come across problems and you have things in your marriage, just flip to that chapter, um, read it. We’ve got some examples. We try to be storytellers and tell from our own experience because we’ve stumbled through a lot and we don’t want you to make those same mistakes

Kristin: and wander around like we did for years

Todd: and

Kristin: We have to build advanced skills as special needs parents.

It’s all special needs parents, not just married couples. We have to, we have to learn how to adapt. We have to build these special skills and it’s the same thing, uh, for married couples raising kids with disabilities. There’s some more skills you need. We learned that the hard way. Um, but we want to just, let’s say here they are.

This is how you can do it now. Go build them. Um, so yeah, so the book is available um, at most retailers, uh, Amazon, Target, Walmart, Barnes and Noble, um, Baker Books has it right now for 40 percent off in free shipping. If you pre-order, um, it releases May 14th. So, if you get your pre-order in, um, you’ll get it 40 percent off and, uh, the links, all the links are on our website, https://disabilityparenting.com. And, uh, we’re also on Instagram @disabilityparenting. So, please, uh, follow us, but also contact us and let us know if there’s some kind of question we can answer. It’s not on our website. We’d love to hear from listeners.

Todd: Which wants you to ask in your own mind, who do I know that has, that could benefit From a book like this, you know, I may not have a child with disabilities.

Um, if you’re listening, who could you get this for and give it to, uh, that’s really what we want this to be is, is something that you can give as a gift to somebody as well, um, to encourage them and their walk and their faith and just their struggles of every day.

Tonya: Well, for joining me today. I wish you well in the launch of this book, and I pray that the couples that get their hands on this, we’ll just find the guidance that they need and be able to, um, to use this tool as they need it. Wander through their own wilderness here. . .

Kristin: Thank you so much, Tonya. We enjoyed it.

Tonya: Don’t forget to sign up for the Water Prairie Newsletter for updates on what’s happening at Water Prairie, special promo codes available for our Etsy shop, and updates on our Amazon bookshelf. You can sign up at https://waterprairie.com/newsletter.

Thanks for joining me today, and I’ll see you next week.

The post Episode #91: Marriage and Disability: Secrets for a Happy Marriage When Your Child Has Special Needs appeared first on Water Prairie.

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Raising a child with special needs is a constant challenge, and when bipolar disorder enters the mix, it can feel overwhelming. But there is help and support available. In this episode, I’m talking with George Brooks, a mental health advocate and father who shares his own experiences and valuable tips for navigating this journey.

Connect with George:

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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!

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Music Used:

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

George Brooks is a mental health advocate and entrepreneur with a powerful story of resilience. Diagnosed with mental illness at a young age, George has navigated a challenging path that included abuse, weight struggles, health issues, addiction, and the complexities of divorce and raising a son with mental illness.

Despite these hurdles, George has emerged as a beacon of hope. He is the CEO of a non-profit organization, a life coach, and a public speaker who inspires others through his lived experience. George is also a writer and producer, actively sharing his message through various creative avenues.

As a Black entrepreneur with a background in business ventures, George demonstrates the power of perseverance and the importance of mental health advocacy within diverse communities.

Full Transcript of Interview:

Raising a child with special needs is a constant challenge, and when bipolar disorder enters the mix, it can feel overwhelming. In this episode, I’m talking with George Brooks, a mental health advocate and father who shares his own experiences and valuable tips for navigating this journey.

Welcome to the Water Prairie Chronicles, a podcast created for special needs parents and those who want to support them. I’m your host, Tonya Wollum, and I’m glad you’re here. This episode is sponsored by the Water Prairie Etsy shop where you can find Tales and a Tote story kits for young children and printable storytelling journals and activity books to help encourage older children to enjoy writing their own stories.

Check out the shop at https://waterprairie.etsy.com and be sure to sign up for the Water Prairie newsletter for special Etsy promo codes. Now, let’s get back to the episode.

Tonya: So George, welcome to Water Prairie. I appreciate you taking the time to come out and meet with me today.

George: I appreciate you having me on. Thank you very much.

So George, we’ve been talking a little bit about mental health and I’m excited because I have not had anyone that’s been able to come on the podcast yet to address this topic. We’ve talked about different types of physical disabilities, of invisible disabilities, learning disabilities, autism, but this is, this is a very important one and it’s a huge one in our country.

Can you give us a little introduction of who you are and what you’re doing now?

My name is George P. Brooks. I’m the CEO and founder of Metta Association, a nonprofit that I started about six years ago to deal with mainly black male mental health, but I help everyone. We also fight recidivism and deal with promoting healthy fatherhood.

My story about 8 7, I started understanding that I was having some mental health issues. My diagnosis bipolar DID and PTSD so life for me was growing life for me growing up was interesting Dealing with a mental illness that at that time they didn’t even diagnose people under 18 with bipolar, right? so I was Often my treatment was not aligned with what was gonna be best for me because the knowledge just wasn’t there at the time So I went through about a 10 year cocaine addiction.

I went through Divorce trauma pretty much any kind of trauma you can go through Almost. But I decided at a certain point to not let that determine who I was. And so that’s why I started my nonprofit. And that’s why I do all the public speaking and things that I do to try to use my trauma to try to help other people.

And through that, uh, try to heal myself as well.

So you mentioned that you were diagnosed at age seven with bipolar?

They didn’t diagnose, but that’s when, you know, going back, looking at it now and talking to like, yeah, you know, that’s probably what it was. But at the time, they didn’t, they didn’t diagnose it and people that, you know, they just speak, it was depression.

So, you know, back during that time, it was really like the 90s. Okay, I was a teenager, um, it was more, so I managed to throw an antidepressants at everything. Everybody was on Prozac. Everybody was on Lexapro. Uh, there, there wasn’t the, the forethought into different conditions and how the, uh, that people individually until today,

right?

Well, because what I’m thinking back is I graduated from college and 87, but just before you would have been diagnosed. And that’s like a crucial year because we had autism was now called autism. It wasn’t before that. We’ve learned that through some of our interviews. ADHD was a new thing. Never had existed before.

Now it’s, it’s out there. We’d talked about different learning styles where everyone doesn’t learn the same. So it’s like all of a sudden in our country, at least I think around the world. We were starting to recognize there’s more to the picture than what we thought it was,

right? Especially with the advent of, uh, the Internet and social media as well.

I mean, you know, just the wealth of information, but also the wealth of misinformation. Yes, so, you know. I think we’re seeing more attention brought on mental health because of the pandemic and what it really did to all of us. I think you got people thinking about their own mental health. I think you got people thinking, well, there’s nothing wrong with me.

Imagine what somebody that has an issue is dealing with. And when that happened, you saw more focus on mental health. You had the George Floyd, which was, you know, stimulating to a lot of us in the black culture. Because we do have to understand, too, that with those cultural differences, Uh, they’re going to be different in terms of mental health, how it’s perceived, you know, my community is perceived as a joke, not necessarily a joke, but as a weakness, as a flaw.

And what I hope to do in my work is to get people talking. And I feel like once we have those conversations, things will open up, you know, all revolutions started with a speech.

I was going to say, because. All these things that I mentioned, you’ve got autism, ADHD and all, they were hidden. If you, I mean, back when I was growing up, it didn’t kind of fit in.

No one mentioned it. You would hide it or you, that child would just kind of stay home because it was almost like a stigma against the family. But today we talk more. We, it’s that, I think I don’t, it’s not gone yet, but I think we’re getting closer to at least opening the door so that we can see that this is just a normal part of. Of life.

And every family is touched by this somehow, whether they want to admit it or not. It’s out. It’s there.

Right. And I want people to think more in terms of this to, you know, if you don’t have a diagnosable condition, think about how hard like, yeah. And imagine dealing with that with a, with a, with a mental illness, one that is not apparent that people can’t see.

So when you’re going through something, people can’t always say. Okay. A lot of times when we have a mental illness, we learn how to lie, manipulate, um, and cover our emotions. Now, the lying and manipulation comes from this. It comes from protecting yourself. I could see that. You to lying about how you’re feeling.

What’s wrong with you? Oh, nothing. What’s going on with you? Oh, nothing. Or you learn to manipulate people to get them to leave you alone.

Yeah.

You know, there’s so much involved in that. And I found that especially with, with, uh, teenagers dealing with mental illness, that’s when they really learn those skills that can be inherently negative.

So that’s why we need to do more with our young people too. And I’m really proud of this younger generation because they are a lot more talkative when it comes to mental health and a lot more understanding.

They do seem to be. Yeah,

it’s more so kind of my generation that’s a little bit slow on the uptake, but you know, I think it’ll happen in time because something did a fix all of it.

And you mentioned the internet earlier. The young people today, they grew up with the internet,

right?

So they’ve had access to, you know, I’m feeling kind of off. They can research that and see what it, what might this mean.

We’ll find other people going through the same thing.

Yeah.

Yeah. You know, so that that’s, that’s a good thing.

Uh, just had to be wary of misinformation. I’m a, I’m a strong advocate for therapy and medication. Yeah, I feel like it’s part of it. I’m not 1 of these people that’s going to sit up and tell you, oh, don’t take medication. They have side effect. Well, every medication has side effect. Right? The thing with psych means you have to remember that you either take about a month or 2 to really get in your system.

Okay.

Or the side of this kind of a bait. But you have to give it a shot. It’s not meant to, it’s not going to cure your mental illness. Be taking my medication does not mean I will not cycle. I will, but it helps me maintain a certain balance to where those instances aren’t as bad.

Your medication

is meant to manage, not cure.

Does it help you cope with those cycles? Is that, or does it lessen the severity of them?

A little bit of both, actually. Yeah. Yeah. It’s a little bit, they’re a little bit easier to manage. With my bipolar, I’m a rapid cycler. So it may go from high to low, like I could be sitting right, talking right now. It may go from high to low, high to low.

Okay. Oh, wow. So you just have to manage it. You know, it’s, it’s like, it’s, it’s, it’s almost like trying to drive a car with no brakes. That’s what being bipolar is, driving a car with no brakes, You might go up a hill slow, but when you come down a hill is fast. The mania is something else.

So we’ve mentioned bipolar.

Would depression be in that same category as far as mental health? Because I think a lot of our parents may be able to relate to depression.

Right. Well, well, depression is actually a part of bipolar, so I’m very familiar with it. But bipolar, uh, well bipolar is you have, uh, mood swings. You may go from mania, which is elevated speech, uh, hyperactivity.

It comes across as being really happy to being depressed. I think my longest depression was one year. Wow. One year. I really didn’t leave the house for about a year.

Wow. Okay.

So, um, but with depression, depression, I think is a lot more common. I think the, I think it may be overly diagnosed just because it’s typically diagnosed when somebody is going through something.

So make sure that, you know, you, when you talk to your clinician that you’re, you’re giving him the best information to, to treat you. A lot of times in mental illness, we don’t always tell the doctor everything we’re thinking or everything that’s going on because we don’t want to get through all this.

That helps for those Covid kids. Right. Right. That’s what you need. That’s what you need. Yeah. Don’t be afraid to go inpatient

when your doctor should be a safe place.

Right. Your doctor should be a safe place. A lot of times with mental illness, we recognize too when it’s like, you know what? I think I need a little stay and we, we need to not be afraid to ask for those times.

One thing that I, I think I have interesting perspective of, I was a child raised. While growing up with the mental illness by my parents and I’m raising it. He’s 19 now. Okay, I’m raising a son that’s bipolar.

And how old was he when he was diagnosed? So both of you were about the same age. Okay.

As far as parenting a child with mental illness patients.

Oh, I’ll tell you the most important thing. It’s not your fault. That’s the main thing. I could tell a parent raising a child with any disability or any mental illness. It’s not your fault because we all go through that moment to where we’re thinking, man, what did I do? Or this is some idea. Right? What am I doing wrong?

This has happened. Yeah, we can’t control what happens to us, but we can control how we respond to it. So if you don’t sit up there and be self deprecating and beat ourselves up over our child’s condition. You know, we can use the energy on trying to educate ourselves more about their condition in terms of being their best advocate because as a parent, our first job is to be our child’s advocate.

So, uh, and that’s even if you’re without a disability, so we can focus the energy elsewhere, but don’t beat yourself up. Don’t blame yourself. Don’t listen to other family members. Surround yourself with positive people. Somebody’s negative, I don’t care if it’s your mother.

Well, that’s something I wanted to ask you.

How do we build that supportive community around ourselves?

There are different groups. Uh, if you work with your child’s, um, physician, uh, their doctor, uh, online, Facebook, you can find groups everywhere and network. So, you know, Before, uh, we were, we were operating under the mindset of that family was everything.

Our family is our support system. That ain’t necessary.

Well, some, some families aren’t connected anymore.

I mean, even if you are connected, if they were given a negative vibe, there’s some people you take care of your child that you need to get away from. Because negativity kills. Is this tough managing the medication and you have to, okay, are they having side effects?

Is it working? Is it not?

Well a growing child, it’s going to be changing to right now.

Now I’m dealing with transitioning him into adulthood with a mental illness. So it’s like, wow, I appreciate that. I mean, I actually cried about it one night because I was, I’m so

I can only imagine

worried about because I know what he’s going to face.

So I’m just trying to do the best I can to make sure he’s prepared, you know, economically, spiritually, physically, emotionally, mentally, you know, I’m just doing the best I can because he’s over 18 now. I can no longer raise him at 18. All I can do is guide him. I tell him you’re 19. Now you need to be on your own.

You need to do this. You need to do that because my job as a parent, as a father to me is for the day that I’m not here. Yeah. And people don’t understand the pressure of raising a child with a disability. I’ve gotten all the strange looks. I’ve gotten all the, what did you do? I’ve got all, you’re not doing this right.

None of us as parents know what we’re doing. We’re just kind of going off of Societal influence and what we were raised by. So there’s no template or handbook because every child is different, you know, and especially you throw in a disability because we have to factor in how their child feels living with a disability.

They have their own frustrations. They have their own fears, you know, and things like that. And I know with my son, him watching me with my bipolar, it was doubly so, but we found ways to cope. Like one thing we always do, it’s like we can feel if each other’s having a baby. So it’s like, Okay, it’s a certain song.

We send each other every time. It’s like if I just if he if I’m having a bad day, he’ll just text this song to me and we do the same thing. So you learn to develop things, develop rapport with your kids. Put those things in place that are going to bring them comfort and time where they don’t have or moments where you’re not there or with our parents that day when we’re no longer there at all.

So, so they can, they can live a full life because living with a mental illness is difficult. I mean, it’s very, very difficult. It’s affected me in every aspect of my life. It’s affecting my relationships with people. It’s affecting my relationship with myself and my relationship with God. But I’ll, I’ll work through it.

I’m working through it. I have to be patient with myself, understand I’m a work in progress, uh, the potter still has his hand on my plate and um, just be patient as a parent, you know, parenting is the most beautiful thing in the world, but it’s the hardest.

Some of our listeners are professionals who work with special needs families.

Some of them are maybe family members who want to be able to support their sibling or their child who is the parent of a child. How can that? extended circle around us. How can they support a family, especially if the child is someone who’s facing a mental illness?

The best thing you can do, and this goes for any situation, just bring the right energy.

Come positive, come ready to help. You know, if you do that in any situation, a person will pick up on that and sometimes they may not even need your help. They just may want the prayer. They may want the sentiment. So, I always try to treat people the way you want to be treated, the way you feel you deserve to be treated.

And just come in with, come in with, with, with, with a sense of righteousness about it. Just genuinely wanting to help people and try to come in and be positive because that’s what people need when they’re going through things.

I’ve been through episodes where someone that I trusted let me down, um, to the point where it did spiral into a type of depression.

It was short term. I’m grateful for it because it helps me to understand whenever I do work with someone who struggles with this daily. Right. Right. A lot of our parents may be in that situation. Sometimes our kids, especially if they’re emotionally intense kids, they can cause trauma to the parent who’s trying to love them and care for them.

How do our parents find joy when they’re struggling in that battle?

This is how I did it because my son was outrageous. Police call all the time, truancy, all that stuff I’ve been through. The trauma that can be induced by a child that’s ill, it’s traumatic. But what I learned to do did not take it personally.

At first, it used to hurt my feelings, the things he was saying, it’s like, oh, he doesn’t love me. But it’s like, I got to understand it’s an illness. And as he got older, he would come back to me and say, you know, I really apologize. I know I said hurtful things. It was just about boys. It was this, it was that.

And we talked about it. And that’s why keeping that communication open, you know, is important, rather. Because. You can alleviate a lot of episodes with your kids by staying tuned in with them.

Don’t talk at them, talk with them. Listen to them. Have conversations. They’ll tell you what’s going on with them.

My father always told me, set up and listen to people. And that works with your kids too, because if you listen, they’ll talk. Kids aren’t as closed off as we think they are. They want to talk to us. They want to, you know, when I’m in my bedroom trying to relax, my son, he comes over to visit. He’ll just come in the room and just hug.

Because we always skip the communication. And it’s just as simple as saying, if you need to talk to me, don’t get upset at what they tell you. Not initially anyway, not unless it’s certain things. A lot of times kids fear our response to the things they have to say to us.

Right, right.

And even as adults, we temper and parse what we say and how we communicate because we live in a sense of fear.

And there’s nothing scarier than being a parent with a disabled or sick child because you’re always fearing. They’re at school, you’re wondering. Are they okay? But, you know, we have to overcome fear and, and, and fear is a bad thing. But bravery is not. Bravery is acting in the face of fear. So, I commend all the parents out there raising our special needs children because I’ve been there and I’m still doing it.

So, just be patient with yourself. Do not fear. Find support systems, or you can reach out to me at my non profit mental association. If we don’t have the resources or the capability to help you at the time, we can definitely find you somebody that can, because self care is important. You have to take time for yourself raising a special needs child.

You have to have time to unplug. You have to give yourself, or else you will burn out. And not all of us have the support system that we want and need, so we have to be on there too. There’s so many layers involved, so many.

I’m hearing you say that it’s okay for a parent to seek mental health help for themselves.

I advise it. I think any parent with a special needs child should be in some form of therapy just for the simple fact of keeping yourself going. Not saying everybody needs to be popping pills, but a therapist will help. A family therapist will help because you have to think about how to fix other tendrils of the family, other members of the family, but the parent, especially because at the end of the day, it’s all on you because your support system can flake on you in a minute.

So you have to be ready for that. If, if grandma want, they’re supposed to pick up little Johnny at three, but she got drunk at the casino. Well, then that’s on the parent and people don’t get that, you know, uh, so, but, uh, it’s, it’s, it’s. It’s been a journey with me raising myself and he’s my first lieutenant, my first born, and he’s going through challenges.

Now, um, the, the, the thing about raising a child with special needs is that they soon become a special needs adult. And you, you will run into a lot of arrested development. Uh, they may not be progressing as fast as their compatriots, not because of any lack of ability, but just because that mental illness.

It’s like trying to run with a broken leg, you know, and people don’t get that because, and that’s why I’m so passionate about, you know, dispelling the stigma around it, because once we do that, then you have people able to get the resources they need where it is an even playing field.

Well, this season I’ve been, the first two seasons, I did an icebreaker type of thing with my guests.

This year, what I’m doing is I’m having you give advice through repeating a phrase, and then you’ll repeat the phrase and finish it. Okay. Okay. Does that make sense? Yeah. All right. So I have two, two, two for you. So I’m going to read it whenever you can, and I can’t even hand it to you if you, if you want to read it.

But, but if you’ll look at the camera whenever you answer it so that, um, so that they know that you’re talking to them about this one, because this, this one, it isn’t for me. So the first one is one thing I wish people understood better about mental health is.

One thing that I wish people understood better about mental health is that it affects all of them.

Nobody did anything to bring that on themselves. You can’t pray it away. You can’t wish it away, nor can you act like it does not exist. It has to be treated and it has to be respected. It has to be discussed.

Excellent. All right, now the second one is a little bit longer, but you can reword it if you need to.

It’s in moments of fear or doubt, I remind myself that parenting a child with disabilities is also about.

In moments of fear or doubt, I always remember that raising a child with special needs is it’s about love. It’s about taking care of your child. It’s about being a parent. It’s about being a good member of society.

It’s about raising a child that even though they may have things that people may see as a deficit, that you can see in them what you want to instill to make sure that they don’t have to operate at a deficit. The love and concern and care that you can give them can help improve their chances of living the kind of life they want despite having a disability.

So it’s really about look.

Excellent. I like, I like both of those. So what else are you doing? We, um, well, first of all, you, you gave us the phone number, right? Do you have other contact methods? Do you have a website or

our website is under construction is going to be meta association. org. You can reach me at a 214 810 6518.

Um, and you can also email me at g brooks at meta association dot org. We also do fundraising. We have a cash app campaign right now. You can donate a dollar sign. Meta association. M. E. T. T. A. Cash app. We’ve got some programs going right now. I’m designing a course for young men to address mental and emotional health and things like chivalry and kind of give some coping skills.

Uh, I’m working on with the Terry Foundation in Lancaster, uh, Texas, uh, on some mentoring programs. Uh, we’ve done food drives before. Of course, I do my public speaking. We’ve been, uh, helping out in some things, uh, civically here in Dallas and in Memphis. So we got a lot of stuff going.

Nice.

Hopefully, I can help as many people as I possibly can this year.

And then you mentioned, um, the podcast.

Right. I have a podcast called Musings. It’s like a little pet project of mine. I’ll send you a link to it so you can link to it. But it’s just something I do, um, on my phone. Maybe if I have a thought for the day during a moment of prayer, introspection and meditation, I’ll speak on it.

And it’s usually something related to mental health because I always try to put myself at and make sure that I speak up as a person living behind the lens of having a mental illness. Otherwise, then that makes my message no different than anybody else’s. We all have. The only thing we have to offer is our testimony.

I’m just offering.

Excellent. Well, I love what you’re doing. I love how open you are about this. I really appreciate you being here and talking about this because I think we definitely need to talk more. It just needs to get there. And this season two, I’m I’ve put together a panel of experts that we’re gonna be bringing them in at different times.

Either through voice recordings or just short little video clips. And George has agreed to be part of that panel. So you’re going to be seeing him again. Um, you won’t know where or when, so just, just keep, keep, keep on watching and I’ll put in the show notes, the links to all of those and your phone number, everything too, so that, so anyone that’s listening can.

Can reach out, you know, you’re my best expert right now as far as being able to point them in the right direction. Well, thank you. I really appreciate you being here today.

Thank you. It’s been a fun, it’s been a pleasure. so much for having me.

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