Autism and Advocacy

John Shouse and his wife Janet, live in Middle Tennessee. They are the proud parents of three adult children, Emma, Evan, and Brandon. Evan is on the Autism Spectrum. John has served as past president at Autism Tennessee and The Arc TN and on today’s episode shares his knowledge and wisdom on some of the supports and programs in Tennessee.

Transcript

Edited transcript

Marsh Naidoo (00:11):

Hello, and welcome to the Raising Kellan Podcast. My name is Marsh Naidoo, and I'm a physical therapist as well as a parent raising my son, Kellan, a 10-year-old boy with cerebral palsy. I blog at www.raisingkellan.org, where we curate resources to empower and educate parents raising children with disabilities. This digital platform is a free resource and part of a 5 0 1(c) 3 nonprofit registered in the state of Tennessee. If you are a business or individual interested in supporting our mission, hop over to the website where you can see what sponsorship looks like. This. This year we look to investigate the infrastructure that is in place to help support adults with disabilities such as housing, transportation, education, employment, as well as medical care. As always, remember, the information provided on this podcast is purely educational, and if you are seeking advice for your specific situation, to always contact a trained professional.. So put those feet up, relax, grab a cup of coffee, In today's episode 79, we are joined by John Shouse of Nashville, Tennessee, who is going to be sharing with us his wisdom and knowledge of advocacy and get ready for some awesome conversation. Welcome to the Raising Kellan Podcast. John, we are so honored to have you join us this morning.

John Shouse (02:06):

I'm delighted to be here. Thank you

Marsh Naidoo (02:08):

Guys, Just to let y'all know that John Shouse and his wife Janet, live in Middle Tennessee. They are the proud parents of three adult children, Emma, Evan, and Brandon. Now, we've actually met Emma before onI believes episode 60. Emma is the communications director at the Tennessee Council on Developmental Disability. Your twins John, Brandon, and Evan are 27 and Evan is on the autism spectrum. I heard on the Special Father's Network. I was going through David's episodes and I said, well, let me just check and see who's in Tennessee and that's how this connection was made.

John Shouse (03:10):

Thank you very much for saying that. That's very kind. I enjoyed doing David's podcast. I think he's got something like, like 200 plus episodes that are released now, and, and he just did one with Temple Grandin that was released. So that's, that's an interesting one. But I really enjoyed being on his podcast.

Marsh Naidoo (03:29):

I just wanna let the listeners know to John, go and listen to that episode 52 that you recorded with David. So I think it would definitely be a precursor to this episode. I am very much interested in learning more about you, John, and specifically about the advocacy work that you do, sir. Now, I believe you have involved with Autism Tennessee as well as The Arc Tennessee. And from what I gather, this is very much a family affair for y'all as well. Can you please tell us a little bit about the origins of your advocacy work?

John Shouse (04:13):

Well, sure. It is very much a kind of family business, I guess, disability advocacy. And like most parents that get thrust into this world after a diagnosis for a child we didn't really know much about the larger disability world before Evan was born. There was a young man in my neighborhood that I knew growing up, Randy who had Down syndrome, and had a lot of challenges. And he actually lived away from his family. And I would see him when he came back for visits periodically throughout the year. But other than that, I graduated high school in 1975. That was the year that I D E A was passed. So prior to that, it wasn't a federal requirement that kids with disabilities be educated alongside their peers in public schools. There were special education classrooms in my schools going back.

(05:25):

The children with disabilities showed up at different times, and they, ate lunch at different times, and there was just really no interaction. So it wasn't a natural part of my growing-up experience the way that it is for many students these days. And I think that's a huge benefit that we have now for kids is that disability is seen. Hopefully, it's just a natural part of the human condition. But when Evan was diagnosed, you know, like many parents particularly parents with children like Evan on the autism spectrum, it's not something that you learn about before the child's born and or right at the time of that they're, that they're born. It's a diagnosis that comes later. You've had this, this child, and, and you begin to see, as we did with Evan, begin to see he's not meeting certain developmental milestones, and you go through an evaluation.

(06:27):

So his diagnosis came prior to age three. And I will never forget the day that Janet and I sat in the psychologist's office who diagnosed him. And she, after having done all the testing and, and evaluations and whatnot pulled her chair up close and very kindly said, have you considered that Evan might have autism? You know, we didn't know anything about autism. We'd seen the movie RainMan. And we thought, well, that's not Evan. And, but we really didn't know anything about it. And, you know, it was the first time that a professional had used that word. We'd begun to suspect that maybe that's what it was. But back then, 27 years ago, the incidence rate was so much lower than it is now. I think at that time it was like one in 2000. So we were thrust into this world and, you know, at once it was devastating and scary, but it was also a relief in a way to have a name that we could put a "word" and we could kind of jump in and start to learn.

(07:36):

She made two recommendations that day. One was, there's an organization here called the Autism Society of Middle Tennessee. She said, get plugged in with that group. They'll have lots of information for you and workshops and that sort of thing. And she said, also, I would really encourage you to seek out other families and draw close to them, cuz you will learn more valuable information and get more strength and encouragement from families who've kind of been there and trodden this road than you will ever get sitting in front of a, you know, a professional like, like me. Back then, I looked up the Autism Society of Middle Tennessee. I tried to look them up on the web and there really wasn't much of a website at all. So I looked them up in the Yellow Pages because that's what we did.

Marsh Naidoo (08:31):

Remember what that is.

John Shouse (08:32):

<Laugh> <laugh>. I found out that their office was actually fairly close to my office. So I decided to go over there at lunch one day, and I thought, you know, I'll kind of sneak in and see if they've got, you know, some brochures. They were in the offices of the Tennessee Disability Coalition, which housed other specific organizations serving the disability community such as the Center for Independent Living and the Brain Injury Association, organizations like that. And of course, the Tennessee Disability Coalition is quite an active force in the disability community which I had no idea at the time, but I went in and there was a rack there with some literature about autism, your child has autism, what do you need to know? You know, that kind of stuff. And I was pulling a few things off the rack, and there was a woman in the office there who said, said: "Hi my name's Laura Lloyd is there something I can help you with?"

(09:43):

And Laura was at the time the Executive Director for the Autism Society of Middle Tennessee, now known as Autism Tennessee. And I sat down and just started chatting with her and ended up staying about two hours that day. And I just remember very clearly that when I left, I had two things in mind. One is I need to call Janet and tell her we're not alone. There's a big community of people out here that are dealing with this and we not, you know, we're not alone. That was a very powerful thing that I learned that day. The other thing that was on my mind when I left was why in the world did I volunteer to do their website <laugh>? So I was actually doing some websites on the side at that time, and I had volunteered to go in and, and do theirs.

(10:38):

So I got involved with that organization right away, and within a, within year or so they had an opening on their board and they asked me to be on their board. And I had never been on a nonprofit board before so I didn't know what was entailed in that, but I just jumped in and it's kind of been a whirlwind ride in the disability community ever since. I learned early on the difference that we can make when we come together as one and speak with a common voice and try to advocate, try to try to make the case known to people who have the ability to change things for our loved ones, that when we speak together with one voice that, that we can often bring change about. I feel very fortunate that I learned that lesson early on and have been able to do a lot of things in that arena.

Marsh Naidoo (11:46):

The Tennessee Council holds a really interesting and exciting program, and that's called the Partners in Policy Making. John, now, I believe you went through the program. Tell us a little bit more about that. Ms. Caitlyn Smith and Emma came on about last year talking about the program and trying to advocate for parents to join the program.

John Shouse (12:11):

Oh, gosh. I would love to talk about it. It's I went through in 2003. Have you gone through Partners, by the way?

Marsh Naidoo (12:19):

Honesty, that is on my to-do list. At first, like the seven months of the program running was like, oh my goodness, am I gonna be able to?

John Shouse (12:30):

Yeah. One weekend per month, at least when I went through it, I don't know how much formats changed in the intervening years, but when I went through it in 2003, you're right. It lasted seven months. And we would come together on a Friday evening, late Friday afternoon and stay Friday night, all day Saturday, and finish up at the end of the day on Saturday. And it starts off with the first session kind of learning about the history of the disability movement. As I said, I D E A was passed in 1975, and you kind of learned the way that people with disabilities were treated historically through the years. You know, with institutions going back into the early years of the 1900s and how things have changed through the years.

(13:25):

And then in intervening months to follow. You have different topics each month that you go through, including learning the legislative process, how laws are introduced as bills and how they get passed into law, excuse me. And it's kind of like the old schoolhouse rock thing. I'm just a bill sitting here on Capitol. You kind of really learned the nuts and bolts of that process and get to go down to the legislature and see how it works, and you learn what it's like to sit in front of a legislature and make a case for a particular thing. You do some mock sessions like that. So it was absolutely a fascinating and life-changing experience to go through that. But the biggest part of it, and the most incredible part was meeting the other people that were going through partners at the same time that I was.

(14:31):

As you said, it's open to families to parents and immediate family members and to people with disabilities. So we had a mixture of parents and siblings and people with disabilities. And for me, and I think for a lot of the parents going through parents of younger children, it was the first time that we had the opportunity to be around adults with disabilities who are just out there in the world living their life and dealing with their challenges and doing pretty well. Thank you very much. Not that they didn't have challenges, because of course, you know, we all have challenges and people with disabilities certainly do, but you know, they were just out there in the world, living life, and it kind of gave me a vision. And I think for other, other parents and, and siblings as well, it kind of helps give them a vision for what their own loved one's life might be like down the road.

(15:34):

And of the, you know, 20 odd people or whatever that went through partners with me way back then. And it's, this is the 20th anniversary of the year that I went through. I hadn't really thought about that till this very second. Wow. Two decades. I still talk to many of them and see them around at events like, you know, the Disability Coalition's Day on the Hill or other events or just encounter them out in the world. And it's great to catch up and just see what they've been involved in. And many of them have gotten, you know, very involved in the disability community. So you do make friends and it's a wonderful program. And I just, I can't speak highly enough for the way that it helped reframe my thinking about what it means to be a person with a disability, and what it means to advocate for people with a disability. I said what it means to be a parent. So I loved partners and I would hardly recommend it to anybody who has the opportunity to go through it.

Marsh Naidoo (16:44):

Thank you for that, John. I think the Tennessee Disability Day on the Hill is actually coming up on March 8th I believe. You are right the Tennessee Disability Coalition does an amazing job bringing together different nonprofits, you know, to advocate for the policies that are on the table at the Hill. In a way, it presents a united front and it engages different organizations.

John Shouse (17:19):

Very much so. And the Coalition and The Arc and the other groups that are involved in organizing and setting up Day on the Hill do a great job of having materials available ahead of time to know what the real kind of hot-button issues that are up before the legislature this year. The filing deadline for bills is right up, I think this week. So when Day On The Hill happens. And do you know the exact date? Is it March? It's in March this year. March 8th or March 5th, somewhere in there.

Marsh Naidoo (18:01):

I have it right. I was March 8th I believe.

John Shouse (18:07):

March 8th. Okay, so by then we will, we'll know what bills are on the table, and hopefully move forward a little bit. And as I was trying to say the coalition and the other organizations do a fantastic job of letting the participants know ahead of time or that day when they show up what bills are out there, who the sponsors are, and what the talking points around those bills might be. What are the, you know, the points that people need to have in mind when they go in and sit down, hopefully with their legislator and say, Hey, this is really a big deal for me and my family, for my loved one with a disability. But at the same time, while you do have the access to the kind of understand what's going on in those bullet points, that's not the important part of advocating and participating in something like, like a Day on the Hill.

(19:10):

What's important anytime you reach out to a policymaker is just to tell your own story and the story of your loved one, because that's what they relate to. You know, they have people come in lobbyists all the time, and people with various organizations saying, this is important and this is important, and, and laying out those bullet points. But to really hear from real people whose lives are impacted by real Tennesseans or, you know, if you're doing it at the national level, real citizens saying, this is my family, this is our story, and this is why this bill is important. It does make a big difference. Just one example among many. Evan currently lives in Supported living through one of our Medicaid waivers in the state of Tennessee, the DSPs, the direct support professionals who work as his staff in his apartment.

(20:15):

He needs 24 7 support. So he has this. We work with an organization called Support Solutions, a fantastic organization in our experience direct support professionals who work with Evan, the wages that are available to pay those folks are just, you know, you can make more money going in flipping hamburgers at McDonald's or Burger King, frankly. So to be able to go in and make the point that these people are professionals and they are doing an incredibly important job in society, in supporting people who need those kinds of supports helping them have access to the community and to live their best lives, they should be paid more than they're currently being paid, and to advocate for the State to make additional funding available for them. That's one of the things that we've advocated for, in recent years. Back when Evan was in school, it was often something maybe through the Department of Education that we'd go in and talk about, or, you know, so there's always something that impacts you and your loved one directly that you can go and talk about. And it does make a compelling case when the legislators hear you speaking from your heart, or if you can take along your loved one, if that's appropriate hearing directly from them or seeing them, it makes, it makes a big difference to touch the hearts and minds of the people who hold the purse strings and can really make a difference in our loved one's lives.

Marsh Naidoo (21:59):

John, Tennessee, can you tell us more about Autism Tennessee sir and its mission?

John Shouse (22:07):

Sure. And I'm not involved with Autism Tennessee as I once was, but I do stay in touch with what they're doing. And I can speak to certainly the way that it was in the past and what they still continue to strive to be. You know, as I said, when Evan was first diagnosed, the first thing that we thought is, where do we turn, you know what's out there in terms of supporting us as a family and supporting him? And one of Autism Tennessee's missions is to connect with those families and to let them know that, as I said, they're not alone. You know, back in, in the day when I was president of the organization, we had parent representatives, I think they still do that you could call in and talk to somebody directly on the phone who would listen and offer suggestions and advice and just sort of help you hit the ground running.

(23:18):

Andtheyheld workshops on a monthly or bimonthly basis orientation so that families could kind of begin to understand autism from a family perspective and also from a professional's perspective. I know this is hard for us to believe now in 2023, but back when we first got involved, you couldn't just Google autism and find a whole lot of websites that gave you reliable information. There just wasn't that much stuff out there online. Evan was diagnosed in 1998, I believe. So there just wasn't that much information out there. Now, if you Google autism, you'll get 9 million hits, and some of them are good, but there's also a lot of junk out there too.

(24:23):

So one of the missions of Autism, Tennessee is to be able to give families reliable information and help them get plugged in and connect with one another. And, and that's a huge invaluable function. I know they currently have support groups that they either run or sort of curate a bit for people on the spectrum, including young people, adolescents, adults, that sort of thing, to help them find one another and connect. And, and it's just a, it's just a tremendously valuable service to be a resource to families to bring all this autism information together to be knowledgeable.

Marsh Naidoo (25:17):

John, I'm curious as to how do you approach self-care. What are some of the strategies that you have in place?

John Shouse (25:27):

Well, that's a huge thing for families because for many of us out there, we try to live full and complete lives, but the disability can, it can eat up a lot of your energy and your focus and your time. So one of the things that I recommend to families all the time is don't let the autism, don't let the disability rule your life, because it can if you let it. And certainly, it's not that it's not important, it's not that it's not a big thing, but there's more to life than that. So for me carving out some time just for John. I love being out in nature, so being able to go out and find a place to walk in the park or walk in the woods is a big thing.

(26:25):

I'm an avid reader. I, I have been my entire life so finding that quiet place where I can sit with a cup of coffee in a good book and just sort of lose myself for a while. And I've recently discovered Audible, so I listened to a lot of audiobooks and being able to do that while I'm, I'm out somewhere. So that's a big part of self-care for me, is just, to realize that despite Evan's challenges and everything that we deal with from a disability standpoint, it's not, it's not all there is to life. And the other things that I tell husbands and wives when I have an opportunity and, and tell dads, and I, as you know, I'm very passionate about helping dads connect with one another is, you know, go out and have a date night sometime where the ground rule is, we're not going to talk about the disability tonight. We're not gonna talk about autism or Down syndrome or whatever it is. You and I are gonna go out to dinner to a movie or whatever, and let's see how long we can go without talking about our child with a disability. And for Janet and I, it's always funny because the conversation always comes back around as eventually it just does. But it comes from that mindset of life is many-faceted, and you have to kinda reach out and embrace all of it. All it, yeah.

Marsh Naidoo (27:59):

In my quiet moments, I always think, you know, just live richly.

John Shouse (28:06):

Yes, wholeheartedly is my word that I, one of my words for 2023. I wanna live wholeheartedly and I love to live richly. That's a great way to say it too.

Marsh Naidoo (28:24):

John, you are also an amazing writer and I love your visualization. So guys John has a blog called the-very-stuff.com, which I would encourage you to check out. Now, I haven't had a chance to read the book you co-authored: The Autism Checklist Guide for Parents and Educators. Just a little bit about that, sir, if you don't mind.

John Shouse (28:54):

One of the books that I read early on, and I would absolutely recommend it to any parent of a young child with a disability, particularly autism, but it's applicable for a lot of disabilities, is by Paula Kluth. And the book is called "You're Gonna Love This Kid". It was a life-changing book for me and just really briefly, the story in that book is when Paula was a brand new special education teacher, and she was reviewing her caseload prior to the start of the school year. She'd just been hired. She went into the building and she was going through all the files of the students, and then she found this file that had this, this drawer that had multiple files on a kid, and I can't remember his name, let's say, Jason. And it's like, Jason this and Jason that, and, you know, and she goes, wow, I got a lot of Jason's.

(29:50):

And then she realized it was like all the same kid, and there's like all this negative stuff. He won't do this and he can't do that, and he's defiant about that, and he refuses, and she's like, how am I gonna deal with this? Oh my gosh. And she was kind of worried about it and was out in the hallway and saw the administrator who had hired her and said how are you settling in Paula? And she said, well, I'm reviewing the caseload, and there's this kid, Jason. And the administrator said, "You're gonna love this kid". You are absolutely gonna love this kid. He is so interesting. He knows everything there is to know about blah, blah, blah, whatever. And she's like, you know, at that moment I realized there are two ways to look at any student. You can either focus on the negatives and the challenges and all of that, or you can say, you're gonna love this kid and look at the amazing positive stuff.

(30:46):

So that was a huge, huge message to me because so many of our kids, particularly kids with autism, are so fascinating When you get to know them, the things that they're interested in and the thing that really lights them up inside, they're just cool. They're just cool people. And yeah, you know, there, there are challenges that we all deal with that if we look for the good, we can be amazed by anybody. And if you support kids with disabilities in the right way, regardless of what their challenges are, they will surprise you every time. I really believe that with my whole heart. So having said that Paula reached out, I got to know Paula, I went to hear her at a conference, and she ended up doing a keynote for the Autism Society of America when I was on the board for them here in Nashville.

(31:41):

We had a national conference, and she was our keynote here. So I got to know Paula and she had reached out to me and said she'd been approached by her publisher to write this book called The Autism Checklist. They had a series called the A D H D checklist, the Down Syndrome Checklist, and they approached her to write the autism checklist, and she said, I will do it, but only if I can do it with a parent. And they said, sure that's fine. She said I can cover the education part, but I feel like I really want a family member, a parent to co-author it with me. And they said, sure. And she reached out to me, which was very kind. So yeah we co-authored this book, the Autism Checklist, and I am very proud of it. I don't think it's at the top of anybody's bestseller list, but it's good, solid content, and I would hardly recommend it, particularly to parents of school-age kids with autism.

Marsh Naidoo (32:37):

I would love for you to tell us about the plans that you guys are making for the Middle Tennessee Dad Meetup.

John Shouse (32:47):

Yeah, I would be happy to. Another dad and I jumped in and started a dad's meetup group several years ago where we would get together once a month and just go out and have dinner and sit around and chat, just dads of kids with autism are related disabilities. Then when Covid came along, it just kind of nuked everything. And you know, we tried meeting via Zoom and it just wasn't as it wasn't as good as being face-to-face across the table and, you know, being able to talk one-on-one with folks. So even though we did have a few Zoom meetings, we kind of let that fall by the wayside for a while. And now that, you know, largely behind us anyway, I still know lots of people with Covid right now, but, it just seemed like it was time to get back to meeting face-to-face.

(33:54):

And I recently met you'd mentioned my podcast with David Hirsch through David and his organization. I'd met another local dad here who had huge energy to do this. His name's Matt Ravine he works at Lipscomb University, and he and his wife have a son with ASD. He was really interested in meeting other dads too. So we're starting back up. Our first meetup is gonna be the first Monday, February 6th. We'll figure out what works going forward for the majority of guys that show up. But the guy that I was doing the dad’s meetup with before said, this is just a chance to get together with some other guys who might understand one aspect of your life, a little bit about one aspect of your life. And the thing that he always said is, I haven't walked a mile in your shoes, but I shop in your shoe store. Meaning that you know, there is a commonality there and some shared challenges and shared joys and that sort of thing, and it's just cool to be able to hang out with some other guys. And, you know,

Marsh Naidoo (35:07):

That's it just hanging out.

John Shouse (35:09):

It's just hanging out. That's exactly right. And we've, we certainly get around to talking about what's going on in our families and our marriages and, and with our kids, but it's not a real structured sort of, well, this month we're gonna have this program and we're gonna talk about, you know, da da da da da. We just let the conversation go wherever it will. And, you know, some of the guys that I have met through that have become really good friends, and I have every anticipation that by starting back up that I'm gonna be able to reconnect with some guys that I haven't seen for a while and make a lot of new friends too. I'm, I'm really excited about jumping back in and doing this again.

Marsh Naidoo (35:52):

John thank you so much for your time this morning. If there are guys that wanna reach out to you, sir, how could they do that?

John Shouse (36:01):

Well, my email is jmshouse@bellsouth.net. My blog site is called The Very Stuff, and that sounds like a weird name when you first hear it, but it comes from a science fiction story that I, I read when I was a kid where somebody said, look here on the ground, the very stuff we've been looking for. So that's where that phrase comes from. It's the very stuff. And it's at the very stuff.com. And there are links on there where you can email me directly as well. I'll reach out.

Marsh Naidoo (36:42):

Thank you so much, John. Have an amazing rest of your Saturday.

John Shouse (36:47):

Well, thank you so much. This has been absolutely a joy, and I'm glad for the opportunity to meet you, and I can't wait to, to wait to check out all of your podcasts.

Marsh Naidoo (37:00):

Thank you for listening along on the podcast today. As always, remember, the information sources listed on the podcast can be found in the show notes. That date, again for Tennessee Disability Day on the Hill is March 8th, 2023. And for more information, check it out at www.tndisability org. And as always, remember, get to the top of your mountain. This is Marsh Naidoo signing off.