My Journey as a Parent: 35 Years of Experience
I’m Mike Carr, and I’ve been walking this path for 35 years with my severely autistic, non-verbal son Michael, who is now 35 years old. He has seizures, pica behavior and aggressive tendencies – challenges that many of you are facing with your own children. When I started the “Transitioning to Adulthood” podcast my goal was simple: To share what I’ve learned about navigating the autism transition to adulthood, especially for those families dealing with severe autism.
Key Points:
- Start planning early—services have long waitlists.
- Teach real-life skills like hygiene and laundry.
- Use community outings and adaptive activities for growth.
- Supported jobs can empower autistic adults.
The Day Everything Changed for Me
About 15 years ago, I had one of those mornings from hell. Michael had wet his bed again, peed on the floor, and I was just done. My patience was shot, so I decided to go for a bike ride to cool off. Bad decision. Some teenager from Austin High blew through a crosswalk and nailed me. One second I’m turning into the crosswalk, next second I’m flat on my back on the pavement.
But here’s the thing – lying there on that asphalt, I wasn’t thinking about my injuries. All I could think was “I have to get home today. I have to get home today.” That’s when it hit me like a freight train. What happens when I can’t get home? What happens when I can’t take care of Michael anymore?
That’s what I call “the cliff” – that moment when the school services end and you’re just standing there wondering what the hell comes next.
The Brutal Reality of Wait Lists
Here in Texas, if you want Medicaid waiver services, you better get comfortable waiting. We’re talking 20+ years. Yeah, you read that right. Twenty years. So if your kid is 4 and you sign up today, they’ll be 24 before they see any services – two years AFTER they age out of school at 22.
I know parents who started planning when their kid was 12, and I thought they were being overly anxious. Turns out they were smart. It’s never too early to start this process because the system is broken, and you need every advantage you can get.
What I Learned About Day Programs the Hard Way
When Michael aged out, we couldn’t find a single program in Austin that would take him. Not one. And we heard the same story from other parents – their kids got kicked out of programs that promised they could handle severe autism. Spoiler alert: they couldn’t.
That’s why we ended up starting our own program, J13. Our philosophy is simple – get these guys out of the building every single day.
The Daily Life Skills Nobody Talks About
You know what they don’t teach in those fancy transition programs? How to actually shower without flooding the bathroom. Michael thinks it’s hilarious to point the shower head at whoever’s helping him. You learn real quick to keep that bathroom door shut.
Or brushing teeth. Michael will suck all the toothpaste off the brush in the first five seconds, then spend the rest of the time brushing with nothing. Or he’ll press so hard on his front teeth that the bristles are destroyed, but hey, those two front teeth are sparkling clean while the rest of his mouth is ignored.
Don’t even get me started on laundry. Our washing machine makes this musical tone when you turn it on – ding, ding, ding. Michael discovered he can make music by hitting the button over and over. Ten minutes of ding, ding, ding, ding instead of actually washing clothes. These are the real challenges our kids face.
Austin Area Places That Actually Work
After years of trial and error, we’ve found some incredible spots around Austin where our guys and gals can have real experiences. Not just field trips – actual meaningful activities that challenge them and help them grow.
Getting Outside and Moving
Play for Abilities Park up in Round Rock is fantastic. It’s designed for people with disabilities, the noise dissipates outdoors, and you can get out there in the morning before Texas tries to kill you with heat.
If you want indoor activities, the new Crux Climbing Gym in Pflugerville has 60-foot walls inside with air conditioning. I know what you’re thinking – “my kid can’t climb a wall.” Trust me, we’ve seen miracles happen on those walls. Something about the challenge just clicks with some of these guys.
The Magic of Animals
Healing with Horses has been a game-changer. You’d think mucking out horse stalls would be the worst job ever, right? Wrong. Some of our guys love wheeling that wheelbarrow full of dirty hay, dumping it out, bringing in fresh bales. And when they pet those horses, you can literally see them relax. I don’t understand it, but it works.
Water Therapy That’s Actually Fun
Austin has amazing pool options. Givens District Pool, Deep Eddy is spring-fed and gets fresh water every night, so no harsh chemicals. Yeah, it’s cold – about 68 degrees even in August – but that’s perfect for cooling off. Barton Springs is the same deal. Our guys love splashing around, and with proper supervision and life jackets, it’s safe and fun.
The Altitude Trampoline Park is pure gold for sensory input. Bouncing up and down, learning to balance, sometimes falling and laughing about it. It’s physical therapy disguised as fun.
Brain Food
The Umlauf Sculpture Garden has trails, ponds, fountains – it’s like meditation for these guys. Just walking around, looking at art, breathing fresh air and the Boggy Creek Farm. Sometimes simple is better.
The Thinkery has sensory-friendly hours where they can explore without crowds. It’s mental stimulation without overwhelming sensory input.
The Uncle Buck’s Fishbowl in Round Rock where you go into this place and it’s like in a giant aquarium.
Morgan’s Wonderland down in San Antonio. They’re set up for all kinds of outdoor activities, rides, waterpark kind of thing for the kids.
And then there’s Zilker Park, which might be Austin’s best-kept secret for special needs activities. We have epic squirt gun battles down there. And I’m not talking about little water pistols – these guys get bazooka-sized squirt guns that’ll soak you from 20 feet away. Michael absolutely loves nailing the staff with those things.
Proving the “Experts” Wrong About Jobs
The Texas Workforce Commission told us Michael was “unemployable.” His buddy got the same diagnosis. Well, guess what? They both have part-time jobs now at Crux Climbing Center, and they make more than minimum wage cleaning the facility.
Here’s how it works: Michael can’t reach high because of his curved spine, but he’s great at saturating cleaning rags with just the right amount of solution. His buddy loves reaching high places and can clean those tall windows. Together, they’re a perfect team. Separately, neither one could do the job well.
They also do other work around the community – cleaning at Gregory Gym on the UT campus, greeting people at the Texas Workforce Commission (yeah, the same place that called them unemployable), restocking coolers, mopping floors. The key is finding what each person can do and building on that.
What Really Happens in the Community
When these guys get out and about, amazing things happen. They learn how to act in public by watching their friends. Michael is nonverbal, but when his buddy takes his iPad and they start joking around, you can see the communication happening. It’s not words, but it’s real connection.
They learn to wait their turn without screaming. They learn social cues from their peers. And honestly, they have more fun than most adults I know. Watching a group of 20-something autistic adults having squirt gun fights in Zilker Park – that’s pure joy right there.
What You Can Do Right Now
Whether you’re in Austin or anywhere else, the principles are the same. Start planning early. Get your kid on waiting lists now. Look for programs that actually get people out of the building and into real life.
Ask hard questions: How many community outings do you do? Where do you go? What do participants learn? Are there people who never leave your facility? If they can’t give you specific answers, keep looking.
And remember – every person deserves a shot at a good life. Yes, even our kids with severe autism who can’t talk and sometimes hit people when they’re frustrated. They deserve joy, purpose, and community just like everyone else.
The cliff is real, but you don’t have to fall off it. With planning, persistence, and sometimes creating your own solutions, your kid can have a life after the school bus stops coming. It won’t be easy, but it’s possible.
Transcript:
Mike Carr (00:03):
Welcome back to Transitioning to Adulthood, and we have a really special episode for you today about going beyond the cliff. I want to talk a little bit about getting your teenage or your young adult severely autistic kiddo out of the house and into a life. And we’re going to talk about this from the Austin, Texas area perspective in particular, which is where I’m located, and discuss recreational and work options for your autistic teen, your young adult. These episodes are really for parents who are navigating this wild, this wonderful, in this often scary world of raising that severely autistic teen and worry about what happens when they get out of school. And I’m Mike, and I’m on that same journey with you. I have a 30 5-year-old severely autistic son, nonverbal has seizures, pica behavior, aggressive behavior, all those kinds of things. And we’ve been doing this for 35 years.
(00:57):
So we sort of have gone through this down the same path you have, or maybe we’re even a little bit further along. You want to share some of those stories with you. And so what I want to talk about today, the mindset I want to put you in is that moment when the school bus, you’re used to coming by, your door stops coming, the IEPs end, and just sort of left standing at this big canyon, this preface of like, what’s going to come next school’s over what now? And so I want to start with a story that actually happened to me about 15 years ago. So it was one of those mornings where nothing was going right. Michael, who at the time was about 20 years old, gotten up, wet his bed again, I had to take his awful ugly diaper out. He was on the toilet, wet some of the urine, got on the floor, peed on his pants.
(01:42):
Geez, I had to get his pants off and put a new pair of pants on him, and I just was not having a good day. And my patience is about as big as that of a gnat. So my wife always steps in and always does all the hard lifting. I just don’t have the temperament. That’s my excuse. Anyway, I know I’m not a very good dad, but that’s my excuse at least it was 15 years ago for letting her do all heavy lifting. Anyway, getting ready for school, I decided I need a break. I’m going to bike down to Town Lake and go for a Jo Hop my bike, did the Shoal Creek Trail thing down to town Lake, biked to the trail head underneath MoPac Bridge, parked my bike there, had a great jog. So I’m coming back on my bike, turning into the crosswalk, and a car just blew through the crosswalk, and it happened so fast.
(02:24):
One second, I was sort of turning into the crosswalk, and the next second I was flat on my back on the pavement. I mean, I couldn’t feel my shoulder. I wasn’t even sure how badly banged up I was. I slowly got up my bike. It was a bit beat up, but it still worked. This teenage driver from Austin High School right down the street ran back, oh my God, are you okay? Are you okay? Are you okay? And I waved him off and I said, yeah, I’m okay. But hey, man, next time, pay attention to the crosswalk signs, right? Because next time you kill somebody, quite frankly, I could have been killed. So I waved them off, and all I could think about was I got to get home today. I got to get home today. And so on that slow ride home when the adrenaline was wearing off and I started realizing I was a lot sore and a lot more beat up than I actually thought I was, it hit me.
(03:07):
And it wasn’t the wet diaper, it wasn’t all the frustration that morning. It wasn’t having to change his pants. It wasn’t the fact that the IEPs were going to stop pretty darn soon, just the exhaustion of being a parent of a young adult. What hit me was the fragility of it all. What if I hadn’t been able to go home after that accident? And that’s the question I think we all wrestle with, is that quiet terror. It almost lives to pack of our minds every day. What happens when I can’t take care of my severely autistic, my son or daughter with multiple intellectual development disabilities? And that’s the cliff. And that’s what I want to talk about today, is how we bridge that cliff. And it can be gut-wrenching, right? All these services stop right after high school, and the future’s uncertain. And it’s what keeps us up at night at 2:00 AM You’re up there with chat, GPT or Gemini or Claude, whatever, AI is your favorite, maybe even Google if you’re old fashioned like I am.
(04:02):
And you ask questions like, well, what happens to my severely autistic adult when the caregivers are gone, when mom and dad can’t take care of ’em anymore? What are my options? Are there any group homes in the Austin area that can actually cater the greater Austin area or your area, your city, your community to my child? And what about vocations? What about supported employment? What opportunities are available? These are scary questions. And even as good as AI is, it often can’t answer them, at least not to your satisfaction or my satisfaction, but planning is critical, right? So regardless of where you are on this journey, and we’ve talked to parents where their kiddos are 12 years old and they’ve started planning, thank goodness, some are three and four years old, not too early. Why not? Because in Texas, the waiting list to get waivers to get financial assistance from Medicaids over 20 years long.
(04:46):
So if you sign up now and you got a 4-year-old, guess what? You’re not going to have any services for at least two years after your child ages out of the school system at 22. So it’s not too early to start planning. And if your child’s 18, 19, 20-year-old, go ahead and start planning, right? Because a plan will help. There’s data that a plan lessens the daily burden of caregiving. It lessens that constant nagging worry about the future. You’re just going to be less stressed. And the whole point of planning, the whole point of this entire activity is to help your child or daughter get the opportunity they deserve. And I personally believe that every human being is entitled to an opportunity to live a joyful and fulfilled life. But it ain’t easy. It certainly isn’t easy with these folks, your kiddos who are nonverbal and get frustrated because they have this inability to be understood because they can’t really communicate their feelings, they don’t understand their feelings.
(05:37):
And then the frustration results in temper tantrums and aggressive behavior. But they should also have this opportunity to thrive and grow in spite of their behaviors. So let’s talk about some day programs and some vocational programs in the Austin area, the greater Austin area, or even if you’re not in Austin, I think this journey and some of these questions and some of what we found are going to spark hopefully some ideas for, so where are they going to go when they stop, when the bus stops, picking ’em up and taking ’em to school? And in looking at dayhab or programs, and not just about the place, it’s not just about the facilities and not just about the location, but it’s what is their purpose? What are they committed to doing? Maybe it’s teaching life skills that they didn’t learn in the transition program in high school, like personal hygiene.
(06:22):
So what I’m not even talking about here, well, it’s about independent living. I like our son learning how to shower himself. I talked about this in previous episodes, so I won’t rehash all this, but Michael has a sense of humor, and he loves to take that shower head and sort of point it outside the door. So if you’re there helping him and you haven’t shut that door and he doesn’t learn exactly what those steps are, you are going to get drenched in that shower and he’s going to love it and giggle and laugh, and that’s just the way it is. Or how do they brush their teeth properly? Michael will suck the toothpaste right off the toothbrush. And the first second, it’s now he’s brushing his teeth with nope, toothpaste. Or he’ll push really hard just on the front part of his teeth, and his front two teeth are just going to be beautifully white and the rest of his mouth isn’t even touched.
(06:58):
The bristles on the toothbrush are gone. They fry. He’s pushing way too hard. Or how does he comb his hair? Or Michael, Michael put on your deodorant. So he’s learned to put on his deodorant. He doesn’t really understand though. Well, you put it on before your shirt goes on. She’s like, are you kidding me sitting there with his deodorant, putting it on his shirt, not on his underarm? You got to laugh at some of this stuff, right? But we all know it goes on. Okay? So those personal hygiene dressing, Michael, if you let it do himself, maybe your son of arms the same way. Who knows what he’s going to do, right? Underwear is on the outside of the pants, not on the inside for t-shirts, not one T-shirt, two shoes. Of course, they don’t match. Maybe sock on one foot, no sock on the other foot.
(07:37):
So just the dressing skills and then the laundry skills. Our LG washing machine makes a tone when you turn it on. Ding, ding, ding, ding. Well, Michael loves that. So hang up the on button, ding, ding, ding, ding. And then he’ll hit it again, and it goes, ding, ding, ding, ding. And he’ll sit there and just constantly hit ding, ding, ding, ding, ding, ding, ding, ding, ding, ding, ding, ding, ding, ding, ding. It’s like, just leave the button alone and hit start, right? It’s like, oh my goodness. We don’t want to spend 10 minutes in the laundry room playing music on the washing machine. So Steve’s kinds of skills. So does the program teach life skills? And whatever program you find besides teaching life skills at whatever level you’re at, do they get your kiddos out into the community? You don’t want them inside all day sitting at a table all day with no physical activity for this population.
(08:24):
And for me personally, that doesn’t serve me very well. I need to get up and move and do things right, and so does probably your son or daughter. And it’s more than just giving community service, community integration, lip service. It’s about a program that offers the right kind of life, not just a location, not just something that’s convenient. So maybe ask questions like, do your members go out on outings? Great. How many outings? Where do they go? What do they do? What do they learn? Are there some participants? Are there some of your members that maybe never leave the site? These really give you a good indication as to what’s going on in Austin, Texas. We couldn’t find a program that would accept our son. And a lot of the parents we know had had their kiddos kicked out of programs. They said, oh, yeah, we can handle your kiddo.
(09:05):
Part of our challenge. And part of what we ended up having to found our own program called John 13, the J13 program. Our guys and gals get out in the community every single day and not to the same place. And we’ve had our crew scout venues, and there are all kinds of cool places in Austin that they can go. And I want to share some of these specific locations, show notes. There’ll be links to these places. So you can actually click on the links and see where these are. And we’re free. And in some cases there’s nominal charge. But in your community, this hopefully will give you some ideas too. So up in Round Rock, Texas, which is just north of Austin, there’s something called Play for Abilities Park. Great place. It’s sensory friendly. They’re outdoors. So if your kids are sensitive to noise outdoors, the noise tends to dissipate.
(09:47):
You can enjoy the air and you get ’em out there in the morning before it gets too hot. If this is the summer, and they’re just going to have a great, great time. If you’re looking for someplace indoors, the adaptive climbing Crux Gym in Pflugerville brand new facility opened up at the beginning of the year, so it’s not even a year long inside air condition. And they can climb 60 foot walls, 60 feet walls inside. And you may think your kiddo isn’t going to be into that. Trust me, we have seen miracles occur in this environment, not just with our own son, but with lots of others healing with horses. There’s another venue we’ve gone to, which is really fun. Now, you would think mucking out a horse stall is probably not the ideal activity, but some of the guys love it. They just think it’s so much fun, and they get to take the wheelbarrow and take all the soiled hay out and dump it out, or they bring in, they carry the new bales of hay and they get to put it all around the stall, and they get to pet the animals.
(10:34):
And there’s something calming and peaceful about petting a horse. I don’t quite understand, but you can see it when they do it. Our outdoor pools in Austin, there are a zillion options. You’ve got the Givens pool, you have all kinds of city pools. You have deep Eddie, and I believe Deep Eddie is spring fed, and they replenish the water every night. So you’re getting fresh water that doesn’t have all that chlorine and junk in it every day. Now it’s cold. It’s going to wake you up even on a hot August day in the summer. And I’m taping this in August, so you can see my ut, my University of Texas Longhorn shirt on. The kids are coming back to college this week, and it’s about a hundred degrees outside. So I mean, going to a Deep Eddie or a Barton Springs pool where the water is about 68, 70 degrees, year round are great outings for these kids.
(11:14):
They get to splash, they get to play, do some swimming with someone right there next to them with a life jacket on. If you’re concerned about that. It’s these activities that are mentally stimulating. They arouse curiosity. They wear you out physically. The altitude, trampoline park we’ve gone to, it’s inside. You’re jumping up and down on trampoline. So think about all the stimulation there. They’re learning how to balance themselves. Sometimes they can’t balance themselves at all. Who cares? They’re having fun. They’re bouncing the friends. They’re bouncing by themselves. They’re bouncing with a colleague, but they’re balancing and they’re doing something that they maybe aren’t used to. The Umlauf Sculpture Garden here in Austin, it has outdoor trails, it has ponds, has fountains. It’s a very therapeutic, calming environment where the kids are just going to relax and breathe and enjoy life, endorse the thinkery. They have sensory friendly hours, and you can stand around and walk around.
(12:02):
So you’re not just sitting, but you’re looking at cool things. You’re experimenting with things. It’s mental stimulation, not quite as much physical, but still, it’s a very interesting, very fun, very creative environment. Other venues, boggy Creek Farms, uncle Buck’s, fish, bowling again, up in Round Rock where you go into this place and it’s like in a giant aquarium. It’s amazing. You get your bowling ball out of a shark’s mouth, talk about something that’s going to stimulate. It’s like, whoa, what’s this all about? Another place that we’ve gone to recently is Morgan’s Wonderland down in San Antonio. Now, that’s a pretty good drive, an hour and 15 minute drive or so, but a lot of fun. And they’re set up of all kinds of outdoor activities, rides, waterpark kind of thing for the kids. And then of course, back to Zilker Park, one of, I think Austin’s favorite venues for just about everybody.
(12:47):
Lots of green. We have squirt gun fights down there. Now, some of these squirt guns, I’m used to the squirt guns that were just these little pistols. No, no, no, no, no, no, no. You give some of these guys a bazooka squirt gun or a machine gun, squirt gun where they’re pumping the water and they nail you. And it’s like getting doused with a garden hose. I mean, you’re going to be, again, soaking wet, but it’s so much fun and everybody’s having a great time. And so what do they learn from all this? Right? Well, they learn how to act in public when they’re frustrated. A lot of these guys are nonverbal. They can’t necessarily communicate that well, but when they see their peers acting a certain way, it mitigates their behavior. And all of a sudden, sudden there’s less screaming, and they learn to wait quietly, believe it or not, quietly for their turn.
(13:25):
And they have fun with one another. They jostle one another. Or Michael has an iPad. One of his buddies will take his iPad and they’ll joke, and Michael just thinks it’s hilarious. He’ll say something. He’ll say something, he’ll say something. And the guy that’s verbal, more verbal thinks this is hilarious too. And so you’ll see all kinds of communications that’s very age appropriate for a bunch of 20 something year olds getting together, Jocelyn, having fun, joking, even though they can’t talk. Vocational skills, all kinds of cleaning, clean cubbies, mopping floors, washing windows, restocking beverage coolers, spraying and wiping down gym equipment at Gregory Gym on the UT campus, greeting people entering or exiting the twc, the Texas Workforce Commission. I mentioned this in the past episode set, our sons unemployable, not a chance. They also gave that same quick diagnosis for one of his buddies.
(14:05):
Well, guess what? They both got part-time jobs at Crux Climbing, center cleaning, and they both get paid more than minimum wage. Right Now, the way this works is really cool because we’re mixing work with play recreation with vocation. So his buddy will put one little itty bitty, itty bitty spot of cleaning fluid on a big rag, which isn’t enough. Of course, Michael just douses it all over. Michael though, can’t reach very high. He’s got curved spine. It can’t, it’s hard for him to reach real high and clean a tall window. His buddy loves to do that, and his buddy will even take a stick and go all the way up the window, right? So what a great team. Michael will saturate the cloth. His buddy will put it on the stick and clean way up high while Michael takes another cloth if he’s saturated and clean the bottom part of the window.
(14:46):
So together they get the window totally clean, whereas each one individually probably not do a very good job at doing that. So that’s a little bit about what’s available in Austin, Texas, what to look for if you’re not in Austin in a day program. But the keys are getting out in the community with the right mentality for the program that we’re going to get out every day. We’re going to make sure that they have fun. We’re going to make sure that they’re also learning. We’re going to mix the environments up to keep that curiosity going. We’re going to wear them out with physical activities, but also with mental stimulation. So next week we’ll continue this discussion, but just wanted to share a little bit about what we’re doing at J13 here in Austin, Texas. Thanks.
