Parenting Through Special Needs with Steve Gundy

Matt: 00:00:00

Welcome to the Live well podcast, where we explore how to navigate life's biggest changes, overcome challenges, and build a future that aligns with your values and your goals. I'm Matt Wilson, financial advisor, coach, and business owner of my practice here at Cornerstone Wealth Services in South Bend, Indiana.

And I am so glad that you're. Sam. Wanted to let that play for a little bit. You know, I was thinking about this. This is a tremendous opportunity that we have today.

And I wanted to play that song for two reasons, really, because of what it's called. It's called the Sun Never Fades, and it's by a group called Strength to Last.

And I think that's incredibly appropriate for our conversation that we're going to have today. People need strength. They need strength to last, to get through the hard things in life. And that's why I started the podcast here.

My heart is for folks who are navigating life's biggest changes, navigating challenge, overcoming challenges, and building a future that aligns with your values and your goals. And everybody's different. And I believe that there's a place for what we're doing here.

And I think you're going to really appreciate what we have to share with you today. And it's not for everybody. Not episode is for everybody, but at some point in your life, this could be for you or it's for somebody that you know.

And so I've been around the block, been doing this as an advisor almost two decades, and there's very little I haven't seen. And there's really an evergreen of subjects that we can talk about today.

We are going to dive into one of the most meaningful and often most difficult topics that families face, caring for a loved one with special needs. And as we were talking about kind of pre show here, it's a journey and it's a journey that's filled with love, filled with real challenges.

It's emotional, it's challenges logistically, and it's challenges financially. And my guest today, Steve Gundy, is the founder of Steve Gundy Coaching. He works with families and professionals in this space.

He navigates behavioral and emotional complexities that come with the special needs folks, helping them find clarity, balance, and hope. And I love that. I think it's an amazing thing what you do. And I am going to give you a little full disclosure here.

He works with my son, my oldest son, and we never thought that we would be dealing with a special needs child. And there are so many questions that we have and there's so many things that we've had to navigate.

And I know that there's people out there who are fighting the same battles and asking the same questions. And I really just wanted to provide some hope, some clarity and provide some coaching. And I'm so thankful that I've got you here, Steve, today.

I really am.

Steve: 00:03:49

Thanks for having me, man.

Matt: 00:03:50

Steve, before we dive into the practical side, I'd love for our listeners to kind of hear your story a little bit. So what led you to start Steve Gundy coaching and focus your work on helping families that have special needs?

Steve: 00:04:06

Well, I have a special needs son who is now an adult who lives at home with me and my wife.

However, neurodivergence and living in that kind of different way a brain works in life started with me because I was diagnosed as an adult with adult adhd, having grown up with it my whole life without the structure that I needed in life to make life go as smoothly as I would have had it gone. So I went through a journey personally of working through all of the things while I was resilient.

I still didn't have the structure that I needed and had to over time, over many, many years, learn what it meant to figure out not just how life works, but how the how works just to build structure that is typical and automatically takes for teenagers and young adults. So that was my own personal journey.

Running parallel to that then was a son who came along who at a very, very young age showed the things that show up when special needs is there. And for him, that's autism.

Matt: 00:05:27

Yeah, my son is on the autism spectrum. You probably wouldn't know until you spent a little bit of time with him. And this is very personal, but I would say that I'll share this story.

And this might be for somebody out there who's listening to this. I don't know why it's so emotional, but it is.

I remember I was watching a video and you know how they have Disney plus they have these shorts and I was sitting there with my kids and I was watching these shorts and there was one short and I gotta go find what the name of it was, but it was about a camp and there were two kids in it. You know this one?

Steve: 00:06:08

I know of it.

Matt: 00:06:08

So they've got two kids in the canoe and the one girl, she's non verbal. And long story short, as I sat there, I watched it in a completely different state of mind than anybody else probably.

And I sat there and I just asked the question why? Probably one of the more impatient people who needs things to be the Way they need to be. God, you gave me a special needs child.

You gave me a child with autism. I don't know what I'm doing. Of all people, I don't know how to navigate this.

And as I've had many times in my life, the still small voice came along and he said to me, matt, because he needed you. And my connection here to today is that, look, you may be feeling the same way, why you may be feeling, what did I do?

And the answer is, you didn't do anything. Potentially here, you, you know, and I would say with certainty, you didn't do anything. But whoever you have in your life, they need you.

They need you. And the good Lord convinced me of that. And I look at my son. I love my son. I love all my kids. But I would say we need to navigate this world for them.

We need to help them navigate this world. And so I think this is for you. This is for the person that is seeking how to navigate the world that we're in.

And we're going to talk about special needs and costs associated with that. And, you know, Steve is an expert, I would say, in the behavior side and the coaching side and has navigated all of this stuff.

So we're going to get into that. So I know we were talking a little bit before, but in your own words, who is this for today?

Steve: 00:08:09

This is for parents who are raising kids who have special needs.

Now, we think of it as being autism, but it's also parents who have kids who fall into the lane of ADHD or any other kind of neurological issue that creates a developmental delay or a gap in their life that needs some help. It needs some help so that life can have more structure, it can have more stability, so that things go smoother. Why?

So that the loved one who has the issue can reach their maximum potential. And that's really the goal. Where is their potential? How can we help them reach the capacity that they're able?

Matt: 00:08:59

So let me ask you this. What types of families, I guess, and individuals do you work with the most?

Steve: 00:09:07

I'm kind of known as the autism ADHD guy.

Matt: 00:09:09

Okay.

Steve: 00:09:10

Okay. So that's primarily who I work with.

Matt: 00:09:14

Okay, what is. You have a coaching organization. So what goes into that? What does it look like day to day in your practice?

Steve: 00:09:24

Well, number one, there's two things that my company does. One is home and community based services under the Developmental Disability, the Bureau of Developmental Disabilities.

And then the other thing I do is online coaching for people with ADHD and people with autism. Some people, everybody Has a different journey and not everybody has reached everything that they need.

So part of building a supportive network might look like an online coach who understands the specifics behind what kind of support is needed for that and to the ability that I can do to support a family and give them some consultation. I do that for them. Sometimes it's helping them getting connected to what they need.

Other times it's dealing with a specific behavioral areas where the individual feels stuck and needs some help, or parents need perspective on how that help needs to shake down.

Matt: 00:10:19

One of the things that is heavily searched for, and we just found this out, nevermind how we did. But one of the things that is heavily searched for is in with respect to costs and finances and special needs is navigating government benefits.

So Medicaid, the Medicaid waiver, can you kind of explain that? I mean, obviously it's how you qualify. I think a lot of people think, oh, that's for other people.

Or maybe there's a tremendously long process, takes forever. Can you give us a little guidance on that general overview?

Steve: 00:10:51

Sure. When you think Medicaid waiver, just think home and community services available. Think supportive network.

So when you get on Medicaid waiver, what qualifies for that home and community based support is someone who's diagnosed with autism, someone who's diagnosed with a traumatic brain injury or some other kind of genetic disability, for instance, like down syndrome. And there's a host of different things that fall under that.

So when a person gets online on the related Indiana.gov website and look up Medicaid waiver, there will be an opportunity to fill out an application and then it's a long process. I stress long. In other words, we all have to be patient.

Matt: 00:11:41

Right.

Steve: 00:11:42

With the onboarding process to qualify and then for the quote unquote slot to be open to, then give you an opportunity to confirm that you still want the service and then come on board where you get all the services that come along with it. You get case management to help manage a budget for your special needs, child or adult child.

You get case management, you get behavior services, you get recreational therapy, you get music therapy, you get respite services, all the things that can fall under there. It's just a matter of which service or services really are a good match for what your needs are. Yeah.

Matt: 00:12:24

And somebody like yourself, you're going to help people navigate that and understand what might be available specifically for them.

When you talk success for your patients or your clients and in this realm, what is success, what does that look like for a family or maybe a client that you coach?

Steve: 00:12:45

Well, for the individuals that I serve for a developmental disability, you really just want to think in terms of what is their meaningful life. What do they want? Okay, what's interfering? What's getting in the way of that life that they want that you support?

What are those things that are getting in the way? My service comes along and supports by helping the person identify what they want, but help them reduce what's getting in the way.

That can be a behavior, but it can be access to the community or it can be some type of communication, social related issue. Either way, we identify what that is and we help reduce what's getting in the way.

And we work on increasing stuff that can help a person arrive to where they want to be so that things go smoother for them effectively.

Matt: 00:13:43

So I appreciate that. I mean, everybody's goals are different. It's just exactly what I do for a living. Everybody's financial needs and goals and behaviors are different.

And so we need to figure out what's important to them. What are they dealing with? What challenges do they have specifically? It could be as simple as, hey, do you guys have a family meeting?

You know, do you talk about stuff that's going on in your life, in your house? I just did a money minute with Matt segment on that. That should be coming out soon. But I would say it could be relatively simple structural things.

It could be the way you think about things, and it sounds like that's what you do as well. So what's something that most people misunderstand about families dealing with special needs?

Steve: 00:14:31

Well, I think one of the things that are misunderstood is the sheer quantity of variables that come into life.

What a family might think is automatic because certain switches just get flipped on in terms of how an individual learns and what they're able to do during their day isn't so automatic. It creates a level of complexity and a level of an emotional experience.

And things that have to be solved from a problematic place just to make the most simple things go. So think in terms of what looks small is really big. What looks like it should go at a typical pace is more like a very slow down pace.

What looks like should be done like an air fryer in about 10 minutes is a real slow cooker in terms of the progress we want to see happen.

Matt: 00:15:33

Yeah. And for folks that like things done a certain way or, you know, to have a child that comes along, boy, that can be an intense battle.

It could be exhausting. So. So let's talk A little bit about those realities.

And, you know, when you care for somebody with special needs, look, it can be very beautiful, but it is exhausting in many cases. And it's also expensive. So what are some of the biggest emotional and I guess financial stress points that you see for families?

Steve: 00:16:02

Well, you want to kind of frame it out. I frame it out kind of like this.

Kids go through elementary school years and you go through the complexities of raising them in the journey that you have for you and your family, it becomes times 10.

Whatever those complexities are, whatever those emotional experiences are, whatever the journey looks like in terms of things needing to have problems that need to be solved, it's times 10. For a special needs family.

It goes to say that all the things that typical families deal with are things that special needs parents and their families deal with. But for a special needs parent and their family, it's much, much more magnified.

And so the level of that experience is more deeply felt, it's more intensified and much more problematic from a place of complexity.

Matt: 00:16:59

Yeah, absolutely. I think you mentioned something about a trailer and it's hitched to you and thinks like a truck.

Steve: 00:17:09

So one of the things we think about is a special needs parent is like a truck, and the truck has a trailer hitch to it. That hitch trailer is your special needs child, or maybe at some point in life, your adult child.

So one of the key things in all of this is that truck has to have an engine that gets maintenance done on it because without the maintenance getting done on it.

Matt: 00:17:37

Right, yeah.

Steve: 00:17:38

That trailer comes along with whatever the maintenance of that truck looks like. And if it's breaking down, how's the trailer doing? It's coming along with it. Right.

So it goes to say that when a special needs parent takes care of themself, they're also taking care of their special needs child or adult child. Yeah.

Matt: 00:17:56

And I think you're talking about burnout.

Steve: 00:17:57

Yeah, well, we have fatigue.

Matt: 00:18:00

Fatigue.

Steve: 00:18:00

In many ways it can be such a heavy experience. And so many parents can feel fatigue on a deeply felt level. In so many ways, it's unseen.

And that's where I think some of the suffering that goes on for special needs parents as they suffer for their children as they go that extra mile, that's not just something they choose, it's something that is required because they're giving everything for their kids.

Matt: 00:18:31

So what do you give? What piece of advice do you give to folks that feel like, hey, you're just in survival mode.

Steve: 00:18:37

So when you're in survival mode, you're doing the absolute minimum possible to get through your day and any of us want to do better than that deep down.

So it comes back to expectations and three variables I want to touch on that is not just important for your special needs loved one, but for you as a person who's caring for them. Think in terms of quantity, pace and time frame. Okay. Quantity. What do we know for special needs individuals? Too much at once is too much. Yeah.

That comes back to our expectations on what not only we feel they can or should be able to handle. Comes back to how, what we feel we can handle, what the expectation should be for ourselves. Quantity, pace. How fast can I go?

Isn't the question as much as what's the pace that makes sense based on the capacity that you and your loved one have? And then timeframe. What's the realistic amount of time that it takes to work a certain quantity or to go at a certain pace?

And it all comes back to balance. Right?

Matt: 00:19:57

Yeah. And I think what you're saying is just realistic expectations.

Your friends and your family just, they might not be able to help you with the specific day to day requirements, but I guess how can your community and the folks around you be more supportive for you? How can you, I guess, draw that out?

Steve: 00:20:18

Well, the supportive network is everything.

Matt: 00:20:20

Yeah.

Steve: 00:20:21

So just think about this. You got to pause, you got to stop.

You got to get out of the harried and hurried part of your life and just start taking an honest look at where am I right now? What am I expecting of myself? Is it realistic now? Where is there support that can make sense for me?

Does it start with a conversation with someone to help me maybe see better what I can't see that's right in front of me right here, right now, in the middle of all my stress, in the middle of all the things I'm trying to do, I have to stop, pause and take a look and think on evaluating that and finding a way to do that. Maybe it's with a coach, maybe it's with a friend, maybe it's with a spiritual advisor in your life, whatever that may look like so necessary.

Matt: 00:21:23

So what I'm hearing you say is you're really talking about habits and you're talking about lifestyle. Is there a specific habit or something that you've seen change a family dynamic for the better?

Steve: 00:21:39

So one of the things you think about when you make that pause happen is on your day thinking about what was hard, what went well, and what are you thankful for today? Now that sounds so simplistic, but that's the whole point. We're living complicated lives, magnified compared to a typical family. Right.

So we have to come back to home base and really hit some fundamentals. What was hard? Name your life. Name what's hard. Name what doesn't feel like it's fair. Name it. That's the first part of getting through it emotionally.

Matt: 00:22:24

Yeah. You know, it's a lot like losing weight, Steve. You know, it's an easy formula. Easy formula, but very, very hard to do.

I mean, look how much money people spend, look how much people write about it. They overcomplicate it. But at the end of the day, it's a fundamental. Calories in, calories out. You burn more than you. That's right, Than you consume.

And so what you're saying is just like that, it's so fundamental. And I think that we over complicate the conversation.

My three things in a family meeting are, again, it's who's doing what, make sure nothing gets missed. Let's look at the calendar. Let's just get a handle on things for the week. Then it's secondly, what's coming in and what's going out.

What do our finances look like, generally speaking, no real heavy lifting. It's just kind of a check in.

And then the third thing, which I think is crucial in what you're talking about here, and that is what's bugging you, what's going on.

Steve: 00:23:27

Yeah.

Matt: 00:23:28

Is there anything that's kind of festering and make it a no judgment zone? And I think that when you do that for yourself, when you say, hey, look, this is really our reality right now, then you gotta kind of accept it.

Steve: 00:23:40

But there's another important piece to that.

Matt: 00:23:41

Yeah.

Steve: 00:23:42

Conversation. When you get past the what was hard? Name it, it's important to say then. Okay, but hold on a minute.

Family, individual that I love and care for, what were your wins today?

Okay, now, wins doesn't have to be that I climb to the summit of a mountain on whatever achievement I have or whatever my long term trajectory looks like a win looks like when I don't consistently brush my teeth. I got my teeth brushed today. That sounds laughable. Maybe to some people. But remember what I said, man, about small things or really big things. Okay.

What we think is a small win is a huge win and it needs to be highlighted and it needs to be stressed as an important part of the day so that when we realize, hey, life is hard, but here's what I did. Well, now we can move on to what gratitude looks like. What am I thankful for today. That changes everything.

It changes your attitude, it will change your mindset. And now what maybe look like a crisis might be more of an inconvenience, but solvable because, yeah, it's hard, but here's where we've won today.

I'm so thankful for that. I'm so thankful for what made that win possible.

Matt: 00:25:21

Right? This is amazing.

I was just talking to somebody last week and they were talking about their life changed dramatically when they got some coaching, they got some financial coaching about their situation. They had a business for themselves. They had a large tax bill. They had some other expenses associated with the business.

And anyway, they were smiling, they were alive, they were healthy. And I said, you know, all those problems sounded like they were solvable. And she just looked at me and goes, you're right, it was.

And her outlook changed on it. You know, it was like, how are we going to handle this now?

Anybody with a huge tax bill is going to sit there and go, oh, my goodness, you know, how am I going to do this? But when it comes to these kinds of issues, are they solvable?

You know, it's like that one comedian who's talking about, I think his name is Goodwin, and he says, you know, when you're sick, you only got two problems, right? Are you going to get better? Are you going to get worse? If you're going to get better, you ain't got nothing to worry about.

If you're going to get worse, you got two problems. Am I gonna die or am I gonna improve? And he goes, if you're gonna improve, then, hey, you got nothing to worry about.

And then if you're gonna die, well, you got two problems to worry about. And he goes on and on. But, you know, the issue is really that. And it is a funny bit, but you're exactly right. There are a lot of solvable issues.

And that's what we're here to help people with.

Steve: 00:26:53

That's a very important thing in this. When you hear the word solve, don't hear the word fix. We are not about trying to fix what we think is wrong with the individual we love, okay?

They're made who they are for who they are. They have dignity. My special needs son. I may not prefer everything he does or how it shows up.

And it can show up a little awkward, or it can show up a little messy. But the real key is, am I walking with him in life? Because to your point, he's in my life because he needed me.

And that doesn't mean we fix everything that's frustrating or annoying to us, but it does mean to that paused moment what was hard, acknowledge what was a win today. That a boy. Nice job. Then that's the path to man.

I'm so thankful today went the way it went because without the problem, we wouldn't have gotten the win. And without the win, I wouldn't be thankful right now. It's not to oversimplify things. Hey, it's messy.

It's messy, but it changes our mindset and our attitude amidst the messiness.

Matt: 00:28:20

Yeah, that's great. It's really a great reminder. Everybody has dignity.

And you know, when I talk with folks about, for instance, long term care as people get older, my one statement on that is, look, what we want to do is provide people their dignity as long as possible to provide them with their dignity. Maybe that's staying at home as long as they can. Maybe that's just getting the care that they need but not losing their dignity.

And that's really what it's about.

So as we talk about special needs and we talk about families that might have to start planning for that long term care and independence, how do you do that? How do you start planning for that early?

Steve: 00:29:06

Well, one of the things we know is that in life we want to reduce as much liability as possible. So that is about mitigating the cost that comes along with special needs issues coming into play. I'm not going to detail what that's about.

I mean that's an exhaustive list. But it costs a lot more to raise a special needs son or daughter, mainly because once they become adults, ongoing care might be required.

Okay, so mitigating that cost is everything. Now let me ask you this, Matt, what do you want to specific cover there?

Matt: 00:29:44

So what programs, resources exist for folks, whether they're non profit or state and federal programs.

You've kind of touched on this a little bit like Indiana Medicaid, but just kind of high level, let people know what's available and if we need to, we can connect people.

Steve: 00:30:00

Well, number one, one of the things you want to take a serious look at is supportive network. And that's where in the state of Indiana, a Medicaid waiver qualification matters.

Matt: 00:30:12

Yes.

Steve: 00:30:13

Because think of all the things you're going to pay for to make sure the simple things that people take for granted can happen.

Therapy that helps communicate medical needs that will come from a special needs diagnosis, secondary medical needs, think secondary mental health needs that will come because life can be more challenging. All these things come into play. And so when you are on Medicaid waiver.

It's going to provide Medicaid insurance to help mitigate the cost of insurance.

Matt: 00:30:52

Yeah. So from my understanding is you're not really raising your kid medically anymore. You're not necessarily as responsible for that.

So the waiver, what exactly are they waiving? What do they. Well, make it.

Steve: 00:31:07

Just think of it in terms of at one point, in order to be able to get services for your one that you care for, they had to be institutionalized in order for that to happen. Now think about that. I got to send my kid away to an institution because I can't afford to take care of them otherwise.

Wow, what a tough place to be in. So they said, hey, you know what, People have dignity. They deserve to be integrated into the community and simultaneously have support.

Well, the primary support is the family. It is who can be there for that individual, but they can't do it all themselves.

That's where Medicaid waiver comes in, home and community based support. So again, that's one of the strongest government funded ways support can come into play for that individual. Because what are you doing?

You're building this scaffolding around their life to help close the gaps on those places that can become problematic for them. So then the other piece to this is Federal Social Security through Supplemental Social Security income and Social Security disability income.

And there's a lot of rules to that, a lot of qualification things that come along with that.

But once Your child turns 18, especially if they're on home and community based supports through the Medicaid waiver, you need to be applying for Social Security so that continued mitigated costs come into play. They deserve the income that's needed to be able to make their life go.

And the rules are set up that once you qualify or you go through the process that involves qualification, there's income there for your loved one. Even if they're working, they still qualify for benefits.

All of this goes to say that it all reduces the cost so that you can be there for them in the way that you want to without all the stresses coming along with it financially.

Matt: 00:33:23

Yeah. And right now I think this good place to maybe take a quick break.

And we look at the fact that one of the reasons I started the podcast, the Live well podcast, was to really help people live intentionally, personally and financially. And for families that are dealing with special needs, planning ahead is not just smart. As Steve was saying here, it is essential.

At Cornerstone Wealth Services, my team and I help families create complete financial plans that include special needs trusts, future care strategies and ongoing estate and tax considerations.

And so to learn more about how we can help you and your family live well personally and financially, Visit me@mattwilsonfinancial.com so I want to just provide a little bit of a close for this first part of the conversation with Steve.

And I really appreciate Steve coming in so that we could talk through not only the financial side and the cost side and navigating some of the benefits, but really just talking through some of the practical ways that you can navigate having a child with special needs or having a loved one with special needs in your life.

And I think Steve's point of just having dignity, making sure, and he wanted me to stress this, that it's not just about fixing a problem, it's about solving the issue. And that might just mean living with it or dealing with the situation that is the reality and we can't change it.

So let's focus on what we can control and focus on what matters. And we were talking about this in a little bit of the show prep where so many people focus on things that matter but they can't control.

And then Americans being such a pendulum society that we are, we tend to gravitate towards things that we can control.

If we've been hyper focused on things that matter, but we really can't control it, the frustration and the anger, the anxiety sets in and then you gravitate towards this great time where you just focus on things that you can control and just hyper focus or hyper fixate on that. And that's just our society in general. That's just the way we operate. Just look at our voting records.

There's about equal number of Democrats as Republicans elected. And most people don't realize that, but it's true. And so we swing back and forth and that's just an example. It's not to get political.

But I would say that if we focus on the things that truly matter and the things that we can control live in the middle where they intersect, in the place where we can affect things moving forward as opposed to, as opposed to just focusing all the things that aren't right, you know, how do we focus on the things that are, how do we focus on the things that went well? And a lot of that, again, it's very easy formula, it's just really hard to do. It's like losing weight as we talked about.

So I would just wrap up this first part of the conversation with, hey, let's get our mind right and let's get our behavior and our mindset for dealing with this and know that you're not alone, number one, know that you're not alone. But let's not try to fix the issues. Let's try to solve for them and make sure that we give people the dignity that they deserve.

And so that's really the first part of the conversation. The second part of the conversation is going to be the practical side.

The costs of care, therapy, specialized education, all those costs can be overwhelming. And we want to help you navigate some of those things a little bit more in depth. So the next episode, we'll get into the special needs trust.

We'll get into how collaborating with a financial advisor can help you protect those benefits and reduce stress in the long run. So we'll highlight all those things and we'll give you a little bit of hope, some resilience, some tools for resilience, some tools for living well.

And Steve is very good at all of that. So we'll end it here and appreciate you joining us and thanks to all of our subscribers and to the viewers.

We're starting to see a tremendous tick upwards in the Live well podcast and it's thanks to you and thanks to your viewership and your support. We appreciate that.

Don't forget to like and subscribe to the podcast wherever you get your podcasts and share it with those who you may think this could benefit. And hopefully today's conversation will. That's it for today and appreciate you joining the Live well podcast. I'm Matt Wilson. We'll see you next time.

Live well.