052- John Shouse, advocate for people with autism and dad of autistic son, Evan.
Dad to Dad #52- John Shouse, advocate for people with autism and dad of autistic son, Evan.
John Schouse: Grandpa Lloyd, uh, Janet’s father, the news that, that Evan had autism, it was a very difficult thing for him to deal with. And I know that he reached out to a gentleman that he went to church with dr. Bruce White, who was a medical ethicist. And he asked Bruce he’s like, what is this going to mean? This autism, what is this going to mean for John and Janet?
And Bruce said the most remarkable thing he said. John and Janet don’t know it yet because it’s all too new and the emotions are too raw, but they may come to see very well that this is the greatest blessing of their lives. Whoa.
Tom Couch: That’s John Schouse father of three, including Evan. Who’s autistic John advocates on behalf of people with autism in his home state of Tennessee.
And he’s David Hirsch’s guest on this dad to dad podcast. Here’s your host, David Hirsch.
David Hirsch: Hi, and thanks for listening to the dad to dad podcast, fathers, mentoring, fathers of children with special needs. Presented by the Special Fathers Network.
Tom Couch: The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs through our personalized matching process, new fathers with special needs children connect with mentor fathers in a similar situation.
It’s a great way for dads to support dads, to find out more, go to 21stcenturydads.org.
David Hirsch: And if you’re a dad looking for help or would like to offer help, we’d be honored to have you join our closed. Facebook group, please go to facebook.com groups and search dad to dad.
Tom Couch: So let’s listen now as David Hirsch speaks with special father John
David Hirsch: I’m thrilled to be talking today with my friend, John Schoude of Franklin, Tennessee, a father of three children and a vice president of engineering for an industrial automation company. John, thank you for taking the time to do a podcast interview with the special fathers network.
John Schouse: My pleasure.
David Hirsch: You and your wife, Janet had been married for 36 years and are the proud parents of three children, Emma, 30 and 23 year old twins.
Brendan and Evan. Evan is the one with autism.
John Schouse: That’s correct? Yes. So let’s
David Hirsch: start with some background. Where did you grow up? Tell me something about your family.
John Schouse: I grew up in a small town in Missouri, Mexico, Missouri, right in the North central part of the state. Very typical kind of a small town.
Experience growing up. I was one of four children. My siblings are all older and the baby of the family, when I was born, they were 12, 14 and 16. So by the time I was six or seven years old, they were all grown and out of the house and we became very close as adults, but I. It didn’t have a great deal of, uh, that sort of family group experience as a small child, because they were all, you know, out and doing their own thing.
My father was the head of electrical maintenance for a very large factory in my home. Mexico is known as. The Firebrick and saddle horse capital of the world. And he worked for one of the large brick plants there. They make a fire bricks for the steel industry and other sorts of high heat applications.
And he was a, you know, a technical guy and we just had a very close knit family.
David Hirsch: Thank you for sharing. If I remember correctly, I think I know what fire bricks are. But I don’t know what saddle horses, what is that?
John Schouse: It’s a particular breed of horse. A lot of people are familiar with the Tennessee walking horses, the horses that walk with the high kick, settle horses, a horse that’s actually pretty close in breed to that.
They have a particular kind of stride.
David Hirsch: You always learn something. I’m one of these interviews. And I didn’t know that Mexico, Missouri was the Firebrick capital and saddle horse capital of the world.
John Schouse: AI ever every school kid in Mexico knows this.
David Hirsch: And just to be clear, fire bricks are something that’s used and the space shuttle pad, and some other situations where it’s super high heat.
John Schouse: Yeah, that’s correct. Actually, one of the interesting things is that all of the launch pads down at Cape Canaveral, Cape Kennedy were built from Firebrick, from my hometown. So when those rockets took off, we all took a little special note of pride, watching them go, knowing that they were launching off of a little piece of Mexico, Missouri.
There you go.
David Hirsch: So it sounds like you followed a little bit in your dad’s footsteps. He was an engineer. You’re an engineer. How would you describe your relationship with your dad?
John Schouse: Yeah, very much so know he was one of those kind of tech minded guys who, who was never afraid to tear into a radio or television or, or anything that needed fixing and figure out what was wrong with it and make it work.
And I think I inherited a little bit of that spirit from him. I can remember many, many nights when. He would have a project going down at the plant. The brick plant is you referred to it as the plant, and he would need to run down and check on something. And he would ask if I wanted to go along. So I would tag along with him and, you know, we’d be walking through this big factory with big kilns, with bricks being baked.
And, you know, I’m wearing a hard hat there at age six or seven or eight. And I was very inquisitive and asked a lot of questions and he always took time and explained how things worked. We just had a very close relationship. I enjoyed spending a lot of time with him, you know, walks in the woods, that sort of thing.
David Hirsch: Great. And I think, I remember you telling me that, uh, his mom, who would have been your grandmother then passed away at a very early age, his age, and it was just he and his dad and his sister.
John Schouse: That’s that’s correct. Uh, there was, there was also a, another baby brother that had died as an infant as well. So, you know, I think one of the, the things that he took great pride in, and that was a huge part of his life was how.
Close a relationship he had with his own dad. And I think he went to extra lengths to make sure that he and I had that kind of relationship as well. So, you know, my grandfather grew up, um, In a small community as well and became a blacksmith. That’s what he did is his whole life. Uh, my memories of my grandfather who passed away when I was in my middle high school years, were him living in a little two room shack out on a farm, on a Hilltop in rural Missouri house that had no running water was heated by a pot belly stove.
He had a well out in the. Front yard. If he needed, needed water, you’d have to go out there and pull up a bucket of water. And he was a very, a very special man as well. I remember just how big his hands were in his laugh. We would pull up when we went to visit my grandfather, my Papaw house, as we called him and he’d be sitting on a rocking chair on the front porch and he’d stand up and wave and come out to meet the car.
And, uh, as I said, just a big gregarious man.
David Hirsch: Well, it sounds like you had some pretty strong father figure influences there from your dad and your grandpa.
John Schouse: Yeah, very much so. Absolutely remember a lot of, uh, a lot of weekends when I would stay with my, uh, grandpa down on his farm and mom and dad would go back home and then come back and pick me up on Sunday evening.
And it was always fun going out and riding his horse around in the field. And, uh, Just spending time with him.
David Hirsch: So thinking about, uh, advice or important lessons that you learned from your own dad, uh, what comes to mind?
John Schouse: One thing that I can remember that he always told me, um, he said, you know, it’s not important that you’re the best at whatever it is you choose to do, but it’s important that you’re the best that you can be.
And I remember that, you know, sometimes I would maybe bring home a grade that wasn’t stellar and he’d say, did you try your hardest? Because either you did or you didn’t. And at the end of the day, you’re the, you’re the one who knows and you have to live with that. So one of the lessons that, uh, that I can remember that was always really important to him was to, you know, to always try to be the best at what I could do, whatever that was.
David Hirsch: Well, what a great, uh, philosophy to live by? Right, which is, uh, given everything you have and don’t look back and say, coulda woulda sent him.
John Schouse: I think he would have been really happy with any career choice I would have made, but I think he was particularly thrilled when I decided to go, not only into engineering, but into electronics so that I think that meant a lot to him.
David Hirsch: Yeah, well, it’s a sort of complimentary
John Schouse: when
David Hirsch: your son or daughter follows you, because it seems like they appreciate what you do and that can identify with it. And I think that’s what you’re saying.
John Schouse: Sure. Absolutely.
David Hirsch: Any other lessons are important takeaways, things that you think about, uh, when you think about your dad?
John Schouse: Well, the importance of family, you know, it was always. A particular joy for him when we would get together for a holiday meals and, and all of my sisters and brothers and their spouses and their kids would come in and we’d have a house full at Thanksgiving or Christmas, or, uh, you know, 4th of July cookout or whatever it was.
Family was extraordinarily important to him as well. And you know, I’ve talked about that with my sisters and my brother as well. How much. Both he and mom instilled in us the importance of staying close to your family.
David Hirsch: Yeah. Well, two really important things to be the best person you can be and stay close to family.
I remember my mom used to say family is the most important thing. She didn’t emphasize that it was one of the most challenging things as well, but she always says camera’s the most important thing. And I think what she was telling me was you need to look out for your younger brother when I’m gone.
John Schouse: That was a little foreshadow.
David Hirsch: I got thick.
John Schouse: Indeed.
David Hirsch: So you went to the university of Missouri in Columbia, you got a degree in electrical engineering, and I’m wondering, what were you thinking? Where was your career going to take you when you first graduated?
John Schouse: Well, I’ve always been a people person and I think I kind of always knew I wanted to be more in the.
Business side of engineering, or at least in some kind of a job where I would have a lot of interaction with other, other people. I never really saw myself as ending up in a cubicle farm, somewhere working for a giant corporation. But, um, many of my classmates ended up going to st. Louis or Kansas city.
And I think I, somewhere in the back of my mind, I always figured I would end up there. You never know what life’s going to bring you. Of course. And I met this girl from Nashville who was at the university of Missouri for journalism school. The university of Missouri has, um, one of the top rated schools of journalism in the, in the country.
And Janet had. Who is a Nashville native or spent? Most of her years growing up in Nashville had, had come to Mizzou for journalism and, and we met. And the short story is I followed her home and we were married in 1983.
David Hirsch: So you took more than an electrical engineering degree.
John Schouse: From
David Hirsch: university of Missouri.
Yes. And I think you said you did not want to go to work in a cubicle farm. I’ve never heard that phrase before, but I can envision what that is
John Schouse: or company, you
David Hirsch: know, where they have a lot of white collar desk jobs.
John Schouse: Well, I had a, I had a roommate in college, dear friend, David, who went to work for Texas instruments.
And I had gone down to visit him. He was a little older than me and I went down to visit him and we went to his, uh, his place. Well, I’ve worked there for TBI and I can remember walking out on a mezzanine and looking out across this gigantic room full of cubicles that I thought, uh that’s that’s not what I want to do.
David Hirsch: Not your vision
John Schouse: and not my vision. Exactly. Right.
David Hirsch: So you worked for, if I remember link systems. And then that became part of a larger company.
John Schouse: No, actually link systems got started about the same time that OSHA was originally introduced. What we do is we make safety controls and automation for the metal forming industry, for people who are stamping parts out of metal, whether you’re talking about a little.
Small Bentall parts or giant quarter panels for, for automobiles or trucks or for the appliance industry. So we make the controls, they make those, um, processes safer for the, for the people that run those machines. Well, I’d like
David Hirsch: to switch gears. Let’s talk about the special needs community share first on a personal level and then beyond.
So what was it like when you go back and think about, uh, Evan? Being diagnosed what was going on at the time?
John Schouse: Well, um, and as you mentioned in the introduction, we, uh, We have an older daughter, um, Emma, who is, um, six years, seven years older than her brothers. And we thought, well, we’ll have, we’ll have one more.
And then boom twins. And, you know, for any of your listeners who, uh, are parents of twins, they’ll agree that, you know, twins are a lot of work in the first year is just. Literally just to blur it by memory, because it seemed like they could never get on the same schedule. And either one was asleep in the other was up wanting to be fed or vice versa, or, you know, there’s just, gosh, it’s a lot of work and you try not to compare children because every.
Child is different. They develop in their own way and their own timeframe. But I think because we had twins, we had a built in comparison, if you will, and somewhere. About a year and a half of age, we just began to notice that Evan was not meeting the same developmental milestones as, as his brother. You know, he was an interesting young man.
He actually spoke before Brendan Evan actually spoke, uh, you know, mommy, daddy. Before Brendan did, but they were very different, right? From the get go. I know Evan was always the one who was much happier just to be kind of left on his own. Brendan was always the one who was in your face, you know, Hey, look at me, look at me.
So when we began to notice that Evan really wasn’t meeting the same developmental milestones, we talked to the pediatrician and he said, well, let’s wait until two. And he gave us the song and dance about. You know, kids develop on their own time prime and you know, I don’t hold any of this against him.
It’s absolutely a common thing that we hear a lot. I’ve heard a lot through the years of folks who have parents who have raised concerns about a child with a pediatrician, who’s said, let’s, let’s wait and give it some time. So anyway, about the time of their second birthday, somewhere right in that.
Timeframe, Evan started being evaluated and we did the speech in hearing evaluation and observation by, um, you know, behavioral psychologist. And she, um, the psychologist who diagnosed him, I’ll never forget the day that, you know, she. Pulled her chair up close to her, Janet and I were sitting on the couch in her office and she said, have you considered that Evan might have autism?
And you know, that just hit us. Like a lightening bolt. You know, the first time a professional had used that word, uh, with us, we had begun to have our suspicion, but you know, that’s just the moment that our whole lives changed his life and our lives, our family’s life. And we really didn’t know anything about autism.
We’d been trying to read a little bit, but you know, we’d seen the movie rain man. We knew that wasn’t Evan. But, um, you know, it was a huge turning point in our lives, obviously
David Hirsch: that was the beginning of the journey
John Schouse: and the beginning of the journey. Yeah. Yeah. Very much so.
David Hirsch: Was there some meaningful advice that you and Janet got early on?
Once the diagnosis was confirmed,
John Schouse: there was David actually the psychologist who, who diagnosed him, you know, she, she recommended a book or two and tried to tell us what our lives would be like a little bit. And of course, you know, it’s just, it just kind of went over our heads a little bit, but the one thing she said that was critical, she said, You need to get plugged in with an organization here called the autism society of middle Tennessee.
It’s a, uh, it’s an organization of parents and you will draw a lot of strength and knowledge and guidance from the other families who are out there. So really reach out and get plugged in with them. So that was headquartered in
David Hirsch: Nashville.
John Schouse: Uh, yes, the organization, um, served a number of counties in middle Tennessee with they headquartered here in Nashville, uh, within a week or so actually I looked him up in the yellow pages because that’s kinda what we did back then.
I didn’t find much of an internet presence and the there, which was not unusual back in 1998, uh, I looked him up and found out that their office was just a two blocks from my office. So I went over there one day at lunch. I thought I’ll go in and there’ll probably be a rack with some brochures or pamphlets or something.
And, you know, I’ll pick a few of them off the shelf and sort of sneak out and sort of learn a little bit if I can. And I ended up spending about two and a half hours there that day, talking with. The woman who was their executive director. And my recollection is as I left, I had two things on my mind. The first and most important was I needed to call Janet and tell her we’re not alone.
We’re not alone. There are other families here right here in Nashville and middle Tennessee who have, you know, Dealt with these, these issues. And we need to get to know them. The other thought in my mind was wondering why I had volunteered to do their webs
and mentioned to, to Laura, who is executive director that. I didn’t really find a website he had. And she said, well, we kind of have one, but it’s not very good. And I was actually doing some websites at the time for some of the sales reps for my company. And I ended up volunteering to do there. Uh, it was my, my entree, if you will, into, into working with nonprofits.
David Hirsch: it was probably God speaking through you.
John Schouse: Suggested that
David Hirsch: you might be able to help with the website. That’s how this will be recorded. So looking back, what were some of the more important decisions that you and Janet made raising three children, including one with special needs.
John Schouse: Well, you know, it’s, it’s tough.
Um, because there, there are a million decisions that you’d have to make. And, you know, I referred to the, the time where we actually got the diagnosis at the time, everything changed and, you know, you have to. Let’s start thinking about, well, what is his education going to look like? Are we going to be in public schools?
Do we look for some kind of a private school setting, you know, for, for a parent that gets thrust into this world, this world of what does it mean to. Parent a child with a significant disability, you have to become a lawyer and an educator and a doctor and all of these things. You mean you’ve got to develop some expertise and knowledge around that and it’s, um, you know, it’s daunting.
It is absolutely daunting and it’s not unusual to look at other families out there and realize that some of those stressors just become. Unsurmountable, you know, any, any family deals with stresses and at the end of the day, it’s, it’s a wonder maybe that any, any, uh, relationships are bad, but, uh, you know, people have looked at the fact that Janet and I have a very strong marriage.
And have asked, how did you guys do it? You know, what, what do you guys have that, uh, others doubt? I don’t know that we have anything that other people don’t, other than the fact that when we stood up there and made those vows, um, we minute and, you know, we’re, we’re committed to making it work.
David Hirsch: You have all very powerful statement about committing to your vows because in today’s day and age, you know, it seems like, you know, We’ll try.
And if it gets too hard, you know, we’ll just go our own ways or maybe there’s greener pasture or something. I don’t know. It’s a, I’m not being judgmental when I say that, but it’s, uh, life is challenging and, uh, if you have children, it makes it more challenging. If you have multiple children, especially those with the special needs, you know, the stress like you said, is just, you know, gets to the point where it might be unbearable.
Not. Every day, 24, seven, 365 days a year, but there’s a lot of challenges that go along. So I was sort of curious to know, not to focus on the negative, but to be authentic. Which are, what are some of the biggest challenges that you and Jenna have encountered over the last 36 years?
John Schouse: I think the thing that that always sort of is surprising, and maybe it shouldn’t be surprising, but you know, we’ve been, we’ve been involved in, um, talking to families through the year, through our work with autism, Tennessee, which is what autism society, middle Tennessee is now known as, and.
We know, we’ve talked to a lot of families and we talk about that idea of coping with, and coming to an understanding of what this new reality is like. And we talk about the stages of grief that people deal with when they suffer any kind of loss. And you know, when you find that you have a child with a deal stability, there is, there is a sense of loss.
There’s a loss of expectations. Future hopes and dreams have changed. Not necessarily. They become less, they just become different. So one of the things that has surprised me is how those things can kind of circle back around and get you again, those stages that you go through, you know, with a child like Evan and Evan is an amazing young man.
I’ll go. I hope we talk more about him here momentarily, but. You know, his, his challenges are very significant. We don’t have really a functional means of communication with him. He’s very bright. He can say anything he wants. He’s a sustaining to watch him sit and Google things on the computer that he’s interested in.
But you know, if you ask him, how was your day or, you know, where’s it hurting or how are you feeling? You know, you’re going to get very. A little answer. Maybe, maybe a one word answer. If, if that, so consequently, uh, you know, he doesn’t have a lot of friends. Uh, he has, you know, some students that he was in school with, uh, particularly through his transition years that he still occasionally we’ll, we’ll get together with and make an opportunity for that.
But when you see. Other typical children, uh, young adults out there, you know, starting their lives, uh, enjoying, you know, maybe holidays or things like that in a way that your child doesn’t, those things are tough. They, they, they really, they really are.
David Hirsch: It sounds like it’s a reminder, right? You’ve already dealt with the issue.
You’ve embraced it. You’ve made all this progress, but there’s these milestones. I think that’s what you were saying, where whether it’s going away to college or living independently or getting married or, you know, whatever it might be. You know, it comes back around to right. To remind you that
John Schouse: not for my child,
David Hirsch: not for that child.
Right. Exactly. And I’m wondering what impact Evan’s situation has had on Emma and then separately, Brandon. Um, his twin brother, as well as the rest of your family. When you think about, you know, not just your nuclear
John Schouse: family, they, the impact has, has been profound and remarkable in so many ways from the Emma was always even before her brother’s reporting and who that child who was just so intuitively compassionate and loving.
And she was a, a huge help with her baby brothers when we first brought them home, the loves them unconditionally and has always been the terrific big sister. There was a gentleman you’re probably familiar with Don Meyer who started a thing called SIM shops. Work groups for young children who are siblings of individuals with significant disabilities.
AMA went to some sip shops early on after Evan’s diagnosis. You know, when she headed off to college and was deciding what to major in there was never much doubt. It was going to be some kind of a helping profession. And she got a dual degree in social work and sociology, and she works for the state of Tennessee for our developmental disabilities council.
She’s also very active in a group called tabs, Tennessee, adult brothers, and sisters, and adult support group for adult brothers and sisters of individuals with significant disabilities. Brendan I’m the same way. And Brendan was always very creative and artistic and he started college as a fine arts major at.
Tennessee tech, which has the Appalachian center for craft, uh, his, his major to start with was blacksmithing. And I thought, well, in one says, that’s cool because you know, he’s kind of following in his great grandfather’s footstep. My Papa. Shell’s doing blacksmithing as a, as a fine art. And then, but after a couple of years, or that he came home from college over Christmas break and he said, you know, He said, I’m, I’m thinking this is maybe a hobby and not a job.
I think I need to be in a helping profession. And he changed his measure as well to a social work sociology. And, uh, he’s currently working at a skilled nursing facility for elders, you know, that, that aspect of, uh, wanting to be. Uh, help her in the world, I think is something that’s huge for him
David Hirsch: as a direct result of having a brother who he grew up literally side by side with.
And it’s hard not
John Schouse: to compare yourself. Absolutely. They, they, yeah, they, they shared a room up until, um, their high school years. So
David Hirsch: any impact on your extended family?
John Schouse: Well, the, you know, there, there is, and an impact for grandma and grandpa was tough. When the boys were first born, Janet’s mom and dad lived, um, maybe five or 10 miles from us.
And they were a huge help and they were very, very close to our boys. And grandma was very close to Brendan and grandpa was very close to heaven. Hey, uh, grandma and grandpa Lloyd, uh, Janet’s father. The news that, that Evan had autism was just devastating to him. He couldn’t talk about it for a while without breaking down in tears.
And this is a man who had a, a, you know, a powerful job in, in business and, uh, was very much a reputation of tell her like it is and, and, uh, It was a very difficult thing for him to deal with. And I know that he reached out to a gentleman that he went to church with Dr. Bruce White, who was a medical ethicist.
And he asked Bruce he’s like, what is this going to mean? This autism, what is this gonna mean for John and Janet and the family? And Bruce said the most remarkable thing he said, John and Janet don’t know it yet. Because it’s all too new and the emotions are too raw, but they may come to see very well, this is the greatest blessing of their lives.
Wow. And when my father in law told me that I was like, you know, like, What, what is he talking about is this, and he realized we have a child with a significant disability, but you know, when I look back on the way that our lives have all been transformed as a family, you know, Bruce was right. I cannot think of anything I wouldn’t do for my son.
To ease his way in this world to help mitigate the challenges that he faces. But at the end of the day, he’s an amazing young man, just like he is. And I don’t want to fundamentally change that. I cannot say that Bruce was wrong. Uh, you know, Evan has been an incredible blessing in our lives. And I’m not going to say, despite all the challenges I’m going to say, maybe because of all the challenges that we’ve had to face in the way that we’ve the way that we’ve dealt with him.
So it w to get back to your original question, David, it was, you know, it did impact grandma and grandpa very much. And for my folks in Missouri, because they were, you know, further away and didn’t get to see Evan on a day in day out basis. It was always like, Is like music. Is he getting better? Is he getting better?
You know, they, they, I think maybe just had a different way of processing. It’s kind of a double whammy for grandparents because they can say, and I guess that’s probably true for siblings as well for my siblings. And Janet has a brother who’s a few years older than her. They can see the struggles that we have, but then they’re also grieving for their grandchild or for their, you know, for their niece or nephew.
So there, there is absolutely a ripple effect of impact that’s fell throughout the extended family.
David Hirsch: Yeah. Well, thanks for sharing. And, uh, not everybody gets to the point where they think about the situation, like the one you’ve described as a blessing, but it’s certainly not the first time I’ve ever heard somebody say that.
And you know, the most powerful message. I think that Bruce White had conveyed to this sort of in your father-in-law. Was, you know, just accepting people for who they are. That’s a really important message. I mean, that’s accepting your spouse, accepting your kids, accepting those in your life. Not trying to change them or trying to always make them a better person, but just saying, Hey, we all are human beings, which means that we all have shortcomings.
Some are more noticeable than others,
John Schouse: you know, from a physical or intellectual
David Hirsch: perspective. And beyond and
John Schouse: you know,
David Hirsch: that’s okay. Right. You know, um, you don’t always have to be changing people. And trying to improve on things
John Schouse: and that’s, that is so true. And, you know, it’s, it’s been driven home to me. I’ve, I’ve been very fortunate, I think because of my involvement with the autism society, middle Tennessee, autism, Tennessee, um, I got involved with, uh, with the national organization, the autism society of America.
I was on their board of directors for a little over four years. And in that role, I worked with very closely with a group of, of, uh, leaders of chapters of that organization around the country and chaired the. Chapter advisory panel in which I got to meet for a little over four years. And in that role, I worked very closely with a group of the leaders of chapters of that organization around the country, and which I got to meet people all over the United States who were not only.
Parents of people on the autism spectrum, but we’re doing the same thing that I was doing back here, home here in Tennessee, trying to, to help run a local support organization. But the other thing that was really cool in their role was that I got to meet. Dozens and dozens and dozens of children and adults on the autism spectrum.
And you know, that old adage of if you’ve met one person with autism, you’ve met one person with autism. That’s, that’s very true because when I think about all the, all the myriad folks that I have met through the years, uh, not just with autism, but with other disabilities, uh, you know, they all are different in their, in their unique and, um, You know, the thing that you come to know is that in many ways they are far more like us than they are different.
Uh, there, there are people with hopes and dreams, uh, for what their life is like. They want to try to figure out how to, how to get some kind of quality of life. And what does that mean for me right here in the situation that I’m in and it’s a powerful lesson. It really is. And
David Hirsch: Evan is transition beyond the IEP, which, you know, starting at age 22, you know, it’s a different world out there.
And I’m wondering if you can just share briefly, uh, what that transition was like and where is he
John Schouse: now? Well, briefly is tough, but because it’s a complicated story, but I think in part, because he saw his sister go off to college and get married and start a life of her own and he saw his brother go off and move out of the house, go to college.
I think part of what was going on with Evan is, you know, what about me? Why am I still here? And you think about a typical teenager that needs to blow off steam and gets tired with mom and dad, uh, you know, is, is all kids kind of want their, want their space for a young person like Evan? You know, that’s really tough because again, a typical teenager would go, you know, Hey, I’m going to see him.
We’d go hang out with my friends. If go to a movie. And Evan didn’t have those options. So we started having some really significant behavioral incidents. Uh, he had some. Some very, very challenging meltdowns, uh, challenging to the point where self-injury was happening, challenging to the point where I would have to physically restrain him to keep him from hurting himself or hurting janitor I, or, you know, property destruction.
And, you know, there were some really difficult in dark episodes in there. And because of that, He was added to our Medicaid waiver under the crisis category here in Tennessee. So he now receives Medicaid waiver services and to make, you know, what was a very long search for, for finding a proper placement into a much shorter story, he lives in a condo of his own and Franklin.
Now about 10 minutes from us. And he has 24 seven support staff through the Medicaid waiver. And the most remarkable part of that is that this incredible young man who had such an. A beautiful and amazing smile has come back. It’s not that all of those incidents have gone away. 100%. He still has some times where his frustration boils over, but, uh, his smile is back and, and he’s just a joy to be around and be with.
Um, so I know the story for a lot of families and a lot of young folks making that transition is much tougher. Um, uh, gosh, we can ourselves in him. So lucky that things have worked out the way they are working out for him right now.
David Hirsch: Yeah. Well, it sounds like he, after watching, I’m gonna go off to college, get married after watching his twin brother, Brendan go off to college.
You know, he had this, Hey, why not? Me too. And I think that there’s that sort of internal drive to be independent
John Schouse: very much so.
David Hirsch: So you’re not living at home with mom and dad that everybody has almost everybody has.
John Schouse: Sure.
David Hirsch: And that you are able to figure that out. It doesn’t sound like it was a straight line up.
It’s not like you went, Oh, let’s find a place. There’s a place and let’s help you move out. I suspect that there was a lot of, uh, Back and forth up and down. And, you know, some challenges that got you to where you are.
John Schouse: Yeah. Working with a lot of different agencies to try to find one that, uh, was able to provide the behavioral support that he needs.
You know, uh, during my time on the board of the autism society of America, one of the gentlemen that I met was Stephen shore. Stephen is an adult with, uh, What it used to be called. And I think Steven would probably still choose to call it. Asperger’s he’s a remarkable guy who goes around and talks about, uh, quality of life and independence and that sort of thing for people on the autism spectrum.
And one of the things I learned from Steven was he said, you know, what is independent living? What does that even mean? You know, we always talk about I’m looking for an independent living situation. It’s nobody lives independently, maybe a, maybe a hermit. We all live interdependently. So the question we need to ask, and particularly for people with significant challenges, what is the right level of interdependence?
And let’s work towards that. You know, let’s spend some time thinking about what does their level, their correct level of interdependence look like. And I just, I think that was a remarkable insight and I’ve used it a lot when I give talks and that sort of thing that, um, You know, I’ll put up a slide that says independent living with a question Mark and tell Steven story.
And it’s absolutely right. So we’ve found, I think the good level of interdependence forever, and he could not live on his own without the support that his staff gives him the direct support professionals that work with him help with, uh, you know, his most. Intimate daily needs, you know, with, you know, showering and eating and all those sorts of things.
But at the end of the day, it’s his place and he’s ready to be in his place. Even if he comes over here and spends an afternoon with us on a weekend or something, he’s always ready to get back to my place.
David Hirsch: Well, what an important revelation to have. And so thankful that you mentioned. Steve Shore’s, uh, story, um, about the difference between independence and interdependence and you don’t want to be isolated.
Nobody should be isolated because that’s where a lot of the bad stuff, you know, starts to happen and people get disconnected from their neighbors and their community. And. You know, it’s not usually a happy ending. So I’m so thrilled that you were able to incorporate that into, you know, what you and Janet have done.
So I want to talk a little bit about the blog that you’ve done, the various stuff. Dot com. Why did you start that? What is that all about?
John Schouse: I love to, right. Uh, which is maybe unusual for an engineer. I don’t know, but I do love to write, you know, even back in the days before blogs, I would send these long rambling stories to folks via email.
And people are always like, you should write a book, but, um, the blog is just a variety of. Different kinds of things that I’ve written in. If, if you go back and look at them, I mean, some of them are humorous or at least I hope they’re humorous. They’re intended to be humorous. Some of them are just random observations.
A lot of them are memories of growing up in Mexico, Missouri, or. No memories of family. The writing is a sort of a form of escape for me. I guess it’s therapy. I’m kind of in my happy place when I’m sitting at the keyboard and the words are flowing out,
David Hirsch: but you would not be the first person to say no people that have blogs or podcasts that it is therapy, right.
Because you’re taking some things that you’ve internalized and then you’re putting them in writing. You’re talking about them. And oftentimes that gives you a chance to reflect in a way that you would not otherwise be able to. And when you see it out there, you have a different perspective. Maybe it’s given you some more clarity that you wouldn’t otherwise have.
And I’d like you to share at least one, the one that really had an impact on me, it was.
John Schouse: The still point. Oh yeah. That was a really profound
David Hirsch: one.
John Schouse: Thank you for saying that. That’s a, I get a lot of feedback about that. It’s been published in a few magazines. Yeah. It’s a story of I’d taken a trip to Missouri when the boys were small.
It was after Evan’s diagnosis, but not to. Far after diagnosis and Janet did not go on this trip. It was just, just Evan and Brendan. And I, and I had made a pallet there on the floor for them to sleep. It was, I would go into grandma and grandpa’s was always an adventure because they got to camp out on the floor, but I made a pallet there on the floor for them to sleep.
And I had God gone off and met with some of my old high school friends and got back and snuck into bed. And in the middle of the night, Evan. I woke with a start. I don’t know if he was having a bad dream or exactly what, but he jumped up and started running through the house. And I, you know, I got up and was running after him and he was just, you know, in a terror and.
Came circling back around and back down the hallway, just as my dad had gotten out of bed to see what was going on. And at that point, my dad was actually sleeping in what had been, uh, had been my old bed from, you know, years before and heaven ran past my father and jumped into that bed. And my dad went over and kind of slipped in behind him and wrapped his arms around him and started stroking Evan’s head and saying, you know, everything’s okay.
It’s going to be all right. And I’m standing there in the Twilight, watching the two of them. And, you know, it was just a very, very powerful moment. And I walked in and sat down in the chair beside the bed there with my dad’s arms wrapped around Evan. Haven’t took a deep breath and went back to sleep. And my dad kind of smiled at me and then he closed his eyes and the two of them lay there together, sleeping.
And it was just, it was just a very, very powerful moment sitting there in the quiet, looking at the two of them and wondering, you know, how much longer is dad going to be with us? You know, is he going to live to see Evan? Grow up and be out on his own. What’s that going to be like, and then thinking about it and what’s his future going to hold?
As I said, at that time, he was very, very young and I, you know, I had no idea whether he was headed for a high school diploma to go off to college, whether that was, you know, in the reality or not. So just all of that uncertainty. And I think I wrote in that piece that, you know, that, that moment, that still point.
Would be with me for a long time and it still is.
David Hirsch: Yeah. Very powerful story. The imagery just as profound. So thank you for sharing. And I think another thing that you’ve done, all the things you described haven’t been enough. So I really appreciate you, not just focusing on your own situation, but you know, putting yourself out there and being as engaged as you have been well beyond.
You know, any average level of engagement is a local group. You and Mike Nolan have started this dad’s meetup group. What’s that about?
John Schouse: Well, Mike and Nancy know, and are dear friends of ours here. They have a son, Nate, who is about Evan’s age is just a year or so difference. Mike is I’m a freelance writer and Nancy also works at Vanderbilt as Janet works in Vanderbilt.
And. You know, several years ago, Mike reached out and said, I said, Hey, let’s go to lunch. And we met up for lunch and just talking through some issues. I think they were having with Nate schooling. And, and I think just kind of, as one of those aha moments, he said, you know, he said, it’s, it’s a shame that the more dads don’t have an opportunity to get together like this and just talk.
And that was sort of the seed of an idea right there. I gave him great credit for this idea that, Hey, let’s start a group for dads. And we’ll get together once a month, just go out to dinner and we don’t call it a support group because guys don’t like support groups, not that traditional a traditional mindset of what is a support group.
Let’s all sit around in a circle. And what are you dealing with and what are you dealing with?
David Hirsch: 12 step method,
John Schouse: right? Like, like it’s not a 12 step group and we don’t have a, we don’t have it. Program, we don’t bring in speakers. There’s no agenda. It’s just a chance to get together and hang out with guys who may understand about one important aspect of your life.
You know, Mike says, I don’t, I don’t, I haven’t walked a mile in your shoes, but I’ve shopped in your shoe store, you know, but you know, the challenges that we all, all face are. Are different, but in some ways similar and you know, with guys, I think it’s different than when women get together and talk, um, their weeks, uh, you know, months we’ll get together for our meeting.
And we may not talk about our kiddos at all. You know, talk about whatever, you know, politics or sports or, you know, what, what problem you’re having with your car. One of our guys works as a service service writer for a local, a local Ford dealerships are always picking his brain about car problems, but there’s a scarcity of opportunities for dads.
Who deal with children who have these kinds of, uh, you know, even if they’re adults who deal with these kinds of disabilities to get together and connect with one another. And this is just a really low impact way of doing something that I think is incredibly important.
David Hirsch: Well, what I love, what you and Mike have done is the intentionality of creating a space for dads to connect, not with a big agenda, not with, like you said, speakers, or a lot of formality.
But just to be themselves amongst guys that can relate because it’s not the same. Right. Everybody’s at a different point in time. Some of the guys are probably married. Some are not
John Schouse: exactly. Some have
David Hirsch: kids that are highly functioning. Some have kids that are low functioning, so
John Schouse: very much so. And some have very young kids, some have adults.
Um, yeah, it’s, it’s very different. Very different. Yeah.
David Hirsch: So in addition to the dads meetup group that you were just talking about, Um, I know that you’ve attended a disability mega conference.
John Schouse: Yes.
David Hirsch: Spoke last year and apparently there’s another conference coming up. What are those about and what role have you played
John Schouse: and then kind of see disability, mega conferences sponsored by the arc Tennessee and several other groups.
The arc Tennessee is the primary organizer it’s been going on now for, gosh, I don’t know, 15 or 20 years. And it’s, uh, an opportunity to, um, And bring the disability community in Tennessee together to hear some great presentations and some, some good keynote folks. And, uh, there are a lot of breakout sessions and I’ve done several breakout sessions through the years.
But last year I did one specifically for dads called it’s a guy thing. And the title of that kind of comes from the idea of, of, you know, for some families. Oh, you know, mom’s got to deal with the school stuff and getting in our child with a disability to, you know, therapies or to the doctor, you know, that’s a mom thing.
And I’m like, no, it’s a guy thing being the parent of a. Of a young person with a disability should also be a guy thing. So that’s where the titles for that came. And I gave the talk last year and they asked me to come back and sort of rephrase it. You have a updated version of it if you will. So that’s coming up in may this year, May 23rd and 24th, Thursday and Friday.
And I don’t have the exact schedule for when my session will be, but anybody who’s listening, who’s within an easy drive of Tennessee and you can look up. Tennessee disability, mega conference, and you’ll easily find the website and be able to find the information about it.
David Hirsch: Thanks for sharing. Very interesting.
So switching gears a little bit, I’m wondering what role spirituality has played in your lives? Well,
John Schouse: very much, very much so Janet and, and I, uh, grew up as best churchgoers or both. Active in our respective church, youth groups as, as kids. And God is a, is very important in our lives. We have a group of folks within our church that, um, we’re, you know, very close with and we get together periodically to have.
You, I have dinner and just kind of talk about, you know, what’s going on in our lives. They all know about Evan Evans had meltdowns in some of their homes, um, you know, in years past. And, and they, they understand the challenges that we have and, you know, to me, church is about community and, uh, it’s, it’s a very important part of our lives.
Thank you for sharing.
David Hirsch: So I’m thinking about advice now, I’m wondering what some of the important takeaways are that come to mind. When raising a child with differences or for dads who have a child with a physical or intellectual disability.
John Schouse: Well, I think one of the challenges the dads have, and I always try to preface these kinds of conversations, but by saying, I don’t want to be didactic and say, dads are this way.
And moms are this way because you know, people are different. But I think one of the things that we we do see often is that men try to be fixers and women. Tend to be copers, uh, when faced with a situation, first thing a guy wants to know is how do we fix this? You know, if I, if I’ve got a, you know, a part that goes out of my car or the mower, I’m going to go to the Lowe’s or home Depot and get the part I need and fix it and be back in business, you know, when faced with problems, women tend to think about, okay, what, what does this mean?
How do we go forward? How do we cope with it? And I think that when you’re. Faced with a situation like raising a child with a disability. If you come at it from a mindset of trying to fix it, you’re going to be disappointed. You’re going to be frustrated. It’s a recipe for, for heartbreak. And I think a lot of the times that we see families that are struggling.
To work as a cohesive family. It sometimes because dad has not dealt well with what is it that I need to do? To be there in a meaningful way for my, for my child, with a disability, because it’s not something you can just, you know, you don’t open up the toolbox and fix it. So, um, I’m not sure what, the advice that is that flows from that, from that statement, other than, you know, you’re in for the long haul, this is not a, this is not a sprint.
It’s a marathon. And that business of having a longterm mindset and a big picture mindset towards future independence or interdependence, quality of life, you know, what are the decisions that I’m making now for this little guy? With these particular challenges, what are the decisions we’re making in school and in therapies that we may choose to investigate?
What does that really mean for what his life’s going to look like 10 years from now, 20 years from now? I think having that big picture mindset is really helpful. And of course the back circle back around to the very first thing we talked about is that idea of, of getting plugged in with other families and getting to know other people who’ve been on this journey and, uh, you know, kind of been there, done that.
That’s hugely important.
David Hirsch: Thank you for sharing. That’s really powerful. I know that most men, most of the men that I know myself included. You do think about fixing things. That’s just a guy thing. Like you were referring to earlier and many aspects of raising children or a child with special needs for that matter, don’t lend themselves to fixing.
So if that’s the only tool in your toolbox,
John Schouse: that’s going to be,
David Hirsch: like you said, set up for disappointment. So I’m sort of curious to know why is it that you’ve agreed to be a mentor father as part of the Special Fathers Network?
John Schouse: I, I was really intrigued with the idea from the first moment that I heard about it when we first met, because, um, when Evan was first diagnosed, uh, there was nothing like that out there.
There was, there was no formal place where I, I could have turned to say, you know, what, what kind of, what kind of one-on-one. Things are out there where I can just chat with somebody. You know, there were the opportunities where we met other families, or we went to a picnic sponsored by autism, Tennessee, or something like that.
But in terms of, of, uh, of, of something like this, a network, I just, I was intrigued by it. And I think it sounds like a powerful way to reach folks.
David Hirsch: Let’s give a special shout out to our mutual friends at autism, Tennessee. Babs TNO as well as Carolyn and Bruce Schindler for putting us in contact with one another.
John Schouse: Absolutely. Yeah. Kudos to them. Really terrific people. I’ve known, I’ve known Carolyn for a long, long time. She was a, she was working there right from the get go at the organization. When we first got involved. Um, known Babs since she came on board a few years ago and they do really good work.
David Hirsch: So if somebody wants to get information on autism, Tennessee, their blog, the very stuff.
Or just to contact you, how would they go about doing that?
John Schouse: Um, my contact information is on the blog. Uh, theverystuffed.com. Um, I think my contact information is also on the arc Tennessee’s website and autism, Tennessee lists in both Mike and I as contacts for our dad’s meetup groups. So there’s lots of places online where you can find me.
David Hirsch: John, thank you for your time. And many insights. As a reminder, John is just one of the dads. Who’s agreed to be a mentor father as part of the special fathers network, a mentoring program for fathers raising a child with special needs. If you’d like to be a mentor father or are seeking advice from a mentor father with a similar situation, your own, please go to.
21stcenturydads.org, John. Thanks again.
John Schouse: Thank you, David. I really enjoyed it. I appreciate it.
Tom Couch: And thank you for listening to the dad to dad podcast produced by Couch Audio for the Special Fathers Network. The special fathers network is a dad to dad mentoring program for fathers raising children with special needs through our personalized matching process.
New fathers with special needs children connect with mentor fathers in a similar situation. It’s a great way. Fathers to support fathers go to 21stcenturydads.org. That’s 21stcenturydads.org.
David Hirsch: And if you’re a dad looking for help or would like to offer help, we’d be honored to have you join our closed Facebook group.
Please go to. Facebook.com groups and search dad to dad.
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