In this episode of the podcast Profound Autism Transition and Adult Living a Better Way, Mike Carr and Kay Carr share their experiences raising their 34 year old profoundly autistic son, offering insights and hope for other parents facing similar challenges. They discuss the importance of early planning for the transition to adulthood, emphasizing that while the journey may be difficult, it can also be filled with joy, humor, and meaningful progress. The Carrs recount personal stories, such as dealing with school-related struggles and preparing for post-school life by researching living arrangements, employment opportunities, and Medicaid waivers. They stress the need for careful consideration of adult living options, creating opportunities for engagement and independence, and building supportive communities. Ultimately, their message is one of hope and encouragement, reminding listeners that with planning, families can create positive futures for their loved ones.
Transcript
Mike Carr (00:04):
Well, welcome to our episode one of our first podcast, profound Autism Transition in Adult Living A Better Way. So we’re going to have a series of episodes where we sort of take you through the life as parents of an autistic, profoundly autistic, severely autistic level three autistic son who’s now 34 years old. So for many of you we’re probably a little bit further along on this journey, and so we wanted to share with you over a series of episodes what we’ve learned, a lot of things that we’ve tried that didn’t work, some of the things that we tried that did work, and just experiences in general. So this first episode is going to be a journey of hope, of planning and of possibility. So I’m Mike. I’ve been married for 45 years to this incredible woman who’s also on this screen, and she’s the mom of our 34-year-old son.
Kay Carr (01:00):
And I’m Kay, the wife and the mom who I’ve been on this wild journey with Mike and our son for all those years, and my amazing husband has hung in there with us and we’ve got decades of experience we can talk about.
Mike Carr (01:15):
Yeah, so we know firsthand that none of us parents plan to be on this journey. None of us plan to have an autistic child or a profoundly or severely autistic child, but what we want to sort of do in this podcast is there is reason for hope. And if you do it right, and we certainly have not done most things right initially, but we’ve sort of figured out from our mistakes. It can be a journey of joy, it can be a journey of happiness, it can be a journey of smiles, even with all the behavior problems, our medical issues. Our son has seizures. He has pica behavior at 34. He still wets his bed at night. I mean, just all the nonsense that you never thought you’d have to deal with. If you handle it right, it can still be something that’s upbeat and positive as opposed to something that you just dread getting up every morning. So this podcast is for parents. It’s for the siblings that may be worried about what happens when mom and dad can no longer take care of my autistic brother or sister, and for the caretakers who are navigating this journey with everybody else.
Kay Carr (02:16):
And as we go along this journey, as Mike said, it hasn’t been easy, but you’ve got to remember, our son has a very interesting personality. He has a really fun sense of humor. So we do laugh a lot. Just so you know, we’re not just in the drudgery of day to day, but we do want to share with you some of our stories. And this one is specifically about transition, but eventually we’d like to share more than just our stories and stories from other parents and experts and people who’ve walked this path before.
Mike Carr (02:47):
We want your input. And so at the end of the podcast, we’re going to have our email addresses. Our website is john thirteen.org. You can email me@mikeatjohn.org and would love to get input from you. Would love to interview some of you guys about your journey, your experiences, your learnings, hopefully over the next few months. So tackling fear, your child, aging out of school. Kate, take it away.
Kay Carr (03:14):
Okay, so one of the biggest fears for any parent is what happens when your child, your profoundly autistic child, ages out of the school system. This is a moment of panic. It’s called falling off the cliff. There are lots of different ways that parents refer to it. And in Texas, transition planning typically starts around the age of 14, maybe 15, but you actually need to start thinking about this much sooner.
Mike Carr (03:41):
So here’s a story that’s a true story. This actually happened to us, and it’s when you maybe start realizing that I need to start planning for the future. And so we got a call one morning while Kay and I were working from the school, and the call sort of starts with, it’s about your son. You need to come to school right now. And that was the context, right? So imagine getting that call. You don’t know what’s going on. Our hearts were racing. Did he have another seizure? Did something terrible happen? All kinds of scenarios. Flood your head has er, have the paramedics been called? Has he already been taken to the hospital? All the worst fears.
Kay Carr (04:29):
But then they said, oh no, he’s fine. He just has a runny nose.
Mike Carr (04:33):
So we’re relieved, right? They call us about a runny nose, but we’re a bit confused. So we sort of asked the question, why do we need to come to school if our son has just a runny nose?
Kay Carr (04:46):
Well, the school nurse said his snot is green, not clear. So he might have a sinus infection, so he has to go home. This was the beginning of many issues with the school, with our son’s care, and just a foreshadowing of things to come in the future.
Mike Carr (05:03):
So transition begins when you start to recognize that, hey, the school’s doing some great things for us, but not everything we need. And then you realize, what’s our son’s life going to look like after school? So when he was around for us when he was around 10 to 12 years old, we thought, look, we need to start planning. Yeah, we’ve got a long runway still in Texas, it’s 22, so we’ve got some time, but we still need to get started. So back then Texas had a list of group homes online. They had even reviews of those homes. Unfortunately they’ve taken that down. But we ordered the list. We certainly looked at, we called every group home at the top, we decided which ones to visit. And we did visit those and we’ll talk a little bit more about that a little bit later on in this episode.
Kay Carr (05:50):
So as the years progress, once the diagnosis occurs, you’ll start thinking more and more about your child’s future and your own as time moves on. And the first thing you want to do always is get your child’s name on the state waiting list for the Medicaid waivers. Now, this sounds nuts if your child is four or five, but some of these waiting lists are years and years example. In Texas, I think ours is 20 years now for some of these waiting lists, there’s different ones though, depending on which waiver list you’re getting on. But you also maybe want to start a notebook or a file, just a place to collect ideas and concerns as you go. So when it comes to the point your child hits that transition age, the school’s going to come to you or you’re going to have an ARD meeting and you’re going to sit down and they’re going to say, what do you see for your child’s future? They don’t really have a plan for you. They need to know what your plan is so they can try to figure out what piece of that plan they need to participate in.
Mike Carr (06:50):
And depending upon the school district you’re in, that may be a very honest question and they’re really excited about helping you. Or it may be a question around which there are many guardrails. So for instance, in the school district we were in, I happened to be on the school board and I knew that we were obligated to provide all kinds of services to parents of autistic kiddos, especially those that had a higher level of need, like our son who was level three. But the teachers, the transition coordinators were coached not to volunteer what all was available because it costs money. And so it’s more like if you’re a parent and you’re not informed as to what schools are obligated to provide. In many cases, schools will not volunteer that information because it puts a financial drain on the budget. And of course, the more money they spend for an autistic child, then the less money there is.
(07:54):
In the case of Texas for football and oh my God, you never want to mess with a budget for football, it’s okay not to have all the answers right away when that question’s first asked, but you definitely need to start planning and you can change your mind at any time. You can have an ARD at some point in the future by asking for it As your child grows and matures, as their likes and dislikes change as you recognize, hey, there’s a need for certain types of programming or education or therapies there may be not getting, you can go back and sort of change that plan.
Kay Carr (08:29):
So just so you know, there are lots of sample transition plans out there. You probably want to take a look at those sooner than later just to sort of get an idea of what all the moving parts are that you’re going to need to be thinking about. And we’re going to provide a link to one of those. At the end of this episode, we actually hired a consultant to help us develop. It was more of a functional assessment transition. And so that’s the outline that we’re going to provide. But hopefully by now, the school systems have some outline, and I know AI has outlines that you can use as starting points for your transition planning. But some of the key areas you want to focus on are things like planning for adult living.
Mike Carr (09:10):
And this is a bit overwhelming at first because you might think, well, my son or daughter can live with me right when they age out of the school system at 22. And that’s a great alternative for a while. And we’ve been doing this for a while and we’re now in our later sixties and we realize a few years ago that we can’t take care of our son forever. So what’s going to happen when we’re no longer around and how much support and supervision is going to be needed? Our son gets one-on-one care from the time he wakes up the time he goes to bed every day of the week, week after week, whether it’s holidays or not. So we visited all kinds of places. We visited state licensed group homes, we visited privately run organizations and facilities. We actually traveled around the country. We went out to Oregon and looked at some places out on the west coast. We went up to Maryland and looked at some places out on the East Coast. And quite honestly, many of them were not what we wanted for our sun. There are a lot of great places for higher functioning level one type autistic kiddos. But as you come down the ladder to level three, the more severe autism, nonverbal behavior problems, medical issues like seizures and pica and whatnot, you very quickly find that there’s almost nothing out there.
Kay Carr (10:24):
So we saw some great facilities, but we also saw a lot of residents that were isolated in rooms or were gathering in a group kind of activity location where there was a TV going and nothing else going on, not really very engaging, and everyone was doing the same thing, or maybe there were sitting at a table doing their own thing. But there was one floating staff member for maybe 15, 20 people. So we got very concerned about this because this is not an environment that our son could manage. So we wanted more than just this glorified babysitting idea.
Mike Carr (11:01):
So we were living outside of Austin, Texas at the time, about an hour drive outside of Austin, and we decided to basically buy a house in Austin near the University of Texas because what we found was some of the colleges, some of the universities have students getting graduate level degrees that have sort of already committed to taking care of and helping educate and provide lifelong learning experiences to folks like our son. So we did that. We bought a house in the University of Texas, and we were able to tap into resources, students that come work with Michael, professors that were willing to make a part of their courses and they’d actually get credit, right? They’d actually have to do a report and present the report at the end of the semester. It wasn’t necessarily what we originally envisioned, but it certainly ended up out for us.
Kay Carr (11:54):
So as you’re thinking about living options for your child, use your notebook or your file to make a list of what’s the most important, and you need to run down the outline or run down this transition plan outline and think about safety, think about engagement, think about fun, and don’t settle for less. I mean, think about more. Think about what the possibilities are. So in that lieu of that, let’s discuss employment and volunteering and creating meaningful activities.
Mike Carr (12:22):
And this to us is just super important. We weren’t willing to compromise on anything. The quality of care for our son and environment for him where he had fun, there was real joy in his day-to-Day activities. It wasn’t by any means glorified babysitting. He was constantly being challenged and giving responsibilities at the level that he was at so that he felt fulfilled. At the end of the day, he felt like he not only did have fun, but he did something worthwhile. Now, the Texas Workforce Commission labeled our son as unemployable after spending 10 minutes with him one day at the high school. Nope, he’s never going to qualify for paid employment. It didn’t take much time for them to get to that capabilities without much analysis. They simply focused on his deficits, and he has many.
Kay Carr (13:13):
So right now, our sons had several part-time paid jobs, and we started in high school with just people that we knew that were interested in helping us and considering the possibility of hiring him or letting him volunteer, whatever. But today, he has a part-time paid job at the Crux Climbing Center in Austin. He does light janitorial, cleans windows, mops floors, wipes down tables with a group of buddies. And he really enjoys this job on breaks. He gets to climb. And frankly, we never figured out that he would be able to climb. We just thought he couldn’t even hold on. So this was really a revelation for us.
Mike Carr (13:53):
Yeah, I think while it’s important to think about your sons or daughters strengths or weaknesses and what they enjoy doing and what they don’t enjoy doing, until you put your child in a setting with other folks like them, you’ll be amazed at how they socialize and how they all of a sudden blossom and do things that you just didn’t have a clue that they would do. And so our son likes to be outside and he doesn’t like animals, but maybe your son or daughter loves animals and whatever those other interests are, incorporate them into perhaps a job opportunity. So a lot of folks with autism tend to be a little bit OCD. They like things in order. And so cleaning jobs, doing laundry, doing windows, mopping the floor. Michael likes to do a lot of this stuff, and that’s sort of something that he gets some joy from.
(14:47):
It also provides something of value to Crux Climbing Center. He gets paid for it. He actually gets paid real money to do that kind of work. And so incorporating things that he’s interested in or that your child’s interested in. And then he gets leisure opportunity breaks too. So it’s not like all work all day long, work for an hour and then you get take a little break and go have some fun. And in his case, he gets declined, which as Kay said, we never thought he wanted to do, but he really enjoys it. And so always be open to new possibilities.
Kay Carr (15:18):
So the one thing we wanted to stress is that planning really does make a difference. When your child transitions to adult life, this can be a very stressful time because they’re coming out of school, you don’t know what the future holds. But we think with some planning, it can open up a lot of possibilities. And we are still in this transition phase. Even though our son is 34, we’re still figuring out how he can become more independent in future. He already has a very full life of activities. He loves basketball. He’s always outside, as Mike mentioned. He walks in the parks. We have trails all around us that he goes out on, and he even gets with his buddies and goes to visit like the arcades and just has fun. So we’re somewhat involved in his life almost every day, but we are trying to step back more and more. And we know that with planning, he’ll continue to thrive. So if you’re just starting this journey, know that you are not alone. There are many parents who are coming up on this transition point or have already passed it and are trying to move to the next stage of their lives. And we are here and so are countless others walking this path.
Mike Carr (16:26):
And we don’t by any means have all the answers, right? I mean, we are meeting with another couple that has a son a little bit younger than ours. He’s 21, Michael’s 34. We’re going to meet with them next week and go house hunting. We’re actually going to try to find a house that we can start transitioning to and have staff at so that the two of them can start spending maybe some weekends there or some nights during the week there. And there are another half dozen or so couples in the Austin area that have similar needs. And so we’re trying to build communities. We know a lot of other folks with different levels of needs and interest in this. And we’ll try to share that journey with you guys over the next few weeks, the next few months, maybe even the next year or two. So please let us know if you have questions. Again, we’ll put all that information into the notes at the end of the podcast and the YouTube video. The YouTube video will be on the Autism Labs YouTube channel. And then John thirteen.org is our nonprofit. So we’ll try to provide information to you in both places, and we’ll keep you posted as we dive deeper into this transition planning for adult living.
Kay Carr (17:31):
And then until we get back to you, there’s always hope, joy, and even fun in this journey. Just remember you’ve got this.
Mike Carr (17:39):
Thanks so much guys. Have a great rest of your week. Bye.