My Journey to Our First Week-Long Respite Care Experience
Hi, I’m Mike Carr from Autism Labs, and I want to share something incredibly exciting that’s happening in our family. After years of preparation, my wife Kay and I are finally taking our first week-long international trip to southern Italy, leaving our severely autistic son Michael in J13’s Respite to Residential program at the Denmar House in South Austin.
This milestone represents years of careful planning and development of our autism respite care program. For families like ours with a profoundly autistic adult child living at home, the idea of taking even a weekend away can seem impossible, let alone a full week out of the country where you’re completely unreachable in case of emergencies.
Key Points:
- Real respite care gives families of profoundly autistic adults true rest and peace of mind.
- New experiences can unlock joy, even after failure.
- Social outings help severely autistic adults thrive.
- Respite care builds independence and fulfillment.
The Boat Thing Changed Everything
When Michael was little, we discovered he loved being on the water. I mean LOVED it. He’d drag his hand behind the boat, completely relaxed for once. The waves, the motor sound, the fresh air – it was like magic.
We got him this big inner tube that looked like a jet ski. His grandparents would take us out on the lake, grandma would pack lunch, and we’d actually be a normal family for a few hours. Those boat trips became the highlight of his week. And ours too, honestly.
Finally something we could all enjoy together where Michael was actually having fun instead of just surviving whatever we were doing.
Movies (But Only with His Crew)
Here’s something that blew my mind – Michael will sit through movies now. Not at home. At home he barely watches basketball games. But with his buddies? He’ll sit through two hours like it’s nothing.
There’s something about being with guys his age that just works. They’re all goofing around, sharing snacks (he can’t have popcorn but loves his pork rinds), and there’s this group thing that keeps him engaged. It’s not about the movie – it’s about being part of something.
Watching him laugh with his friends, seeing him be one of the guys – that’s when I realize how much he’s grown.
Disney World Was a Disaster
Not everything worked. Disney World was awful. I learned where every bathroom was in that entire park (they’re spotless, by the way). Michael hated every minute.
We made the mistake of taking him on Raiders of the Lost Ark first. Dark tunnel, sudden drop, giant boulder, everyone screaming. He had no clue what was happening and it scared him to death. The whole trip was basically going from bathroom to bathroom during meltdowns.
But I don’t regret trying. That’s how you learn. We figured out he hates dark, enclosed spaces and sudden surprises. He wants to see what’s coming and be outside. That led us to Morgan’s Wonderland in San Antonio, which is designed for people like Michael. He loves it there.
Family Gatherings
Holidays used to be brutal. We couldn’t travel, so everyone came to us. Kay would be juggling meal prep, work, and Michael’s needs all at once.
But family members stepped up. Cousins, aunts, uncles, grandparents – they all learned how to handle Michael’s aggressive behaviors and keep him entertained. His cousins especially got good at including him.
Those gatherings taught everyone that Michael isn’t just someone to manage – he’s a person who brings joy and can have fun with the rest of us. His cousins learned early that having a special needs family member doesn’t mean walking on eggshells.
From Antisocial to Actually Liking People
Twenty years ago, if you’d told me Michael would enjoy hanging out with friends, I’d have laughed. Grade school, middle school, high school – he wanted nothing to do with other kids.
Then came Special Olympics swimming. The first time he heard everyone yelling “Go Michael! Go Michael!” something clicked. He didn’t understand why people were cheering, but he loved being the center of attention.
That’s when I realized he actually wants social interaction – he just needed to figure out how. Now at 35, he genuinely enjoys his buddies. They’re all goofy, they get each other, and it’s beautiful to watch.
Why Shaking Things Up Actually Helps
I know everyone says people with autism need structure and routine. And they do. But if you never try anything new, you never discover what might make them happy.
Yeah, it’s uncomfortable. For them and us. But our best discoveries came from pushing outside that comfort zone. The boat trips, movie nights, even the Disney failure – they all taught us something.
The key is being willing to fail and adjust. Don’t give up after one bad experience. Figure out what went wrong and try differently.
What Our Respite Program Really Means
Our respite to the residential program isn’t just about giving parents a break, though God knows we all need one. It’s about giving our adult children opportunities to be independent, to be with their peers, to try new things without mom and dad hovering.
Michael’s going to have experiences this week that he wouldn’t have if we were there. He’s going to problem-solve things on his own, rely on his staff and his friends, and maybe discover something new about himself. That’s worth more than any vacation we could take.
For families looking for real respite care, the kind where you can actually relax and not worry, that’s what we’re trying to provide. Check out our program at john thirteen.org if you want to know more about what we’re doing in Austin.
The Goal: Joyful, Fulfilled Lives
At the end of the day, we’re all just trying to help our kids live good lives. Joyful lives. Lives with variety and new experiences and friends and activities they actually enjoy. Sometimes that means stepping way outside everyone’s comfort zone.
Will Michael have a perfect week while we’re gone? Probably not. Will we worry the entire time? Absolutely. But will it be worth it to know that families like ours can have real respite care, real breaks, real lives beyond just managing autism 24/7? You bet.
That’s what variety really means – not just trying new activities, but creating space for everyone in the family to grow and experience joy. Even if it takes thirty-five years to get there.
Transcript:
Mike Carr (00:04):
Well, welcome back to another episode of Autism Labs. And this week I thought I’d talk about variety, as in variety is the spice of life. And I have my new shirt for Italy, believe it or not. My wife and I are taking off this Saturday for a week in southern Italy. We’re flying into Naples and then we’re driving a couple hours south to meet our grandkids and son-in-law and daughter. And our severely autistic son is going to spend an entire week in our respite to residential program for the first time ever at the Denmar House in South Austin. And the reason this is so exciting is we’ve taken little trips before, but to leave for a full wait a week out of the country where you’re totally out of touch, you can’t get back quickly in case there’s an emergency, is a really big deal.
(00:51):
And we’ve been working towards this for many years and we have a staff that’s trained with backups and procedures in place. And Kay, my wife has worked on all the meal prep and coordinated that with the folks that will be doing the cooking. And our son Michaels get to spend time with a buddy or two of his the entire week and they’ll be going out and doing different things every day. And so for all you parents out there that have an adult, a severely, profoundly level three autistic son or daughter living with you at home, you probably are envious that man, how you’d like to be able to get away for just a weekend and much less a week and not have to worry about your child being taken care of and all the medical problems, behavior issues that might come up. I mean the plethora of things that might come up.
(01:35):
Well, that’s what our program’s all about. And if you want to find out more about it, you can segue over to john thirteen.org or just J thirteen.org. And we have more information about what we do in Austin, our R to R program, which stands for Respite to Residential. And I’ll probably do a podcast and we get back in a couple of weeks and let you know how wonderful everything was and how hopefully, hopefully our son didn’t have any problems. But let’s talk about other things that had to do with the variety of life. So another thing I wanted to talk a little bit about are boat trips. Back when our son was little, we discovered that he loved the rhythm of the waves on water and the sound of being on a boat. And he dragged his hand behind him laying in the back on cushions, enjoying the boat ride.
(02:20):
And it almost like it calmed him down. It relaxed him, I think, between the sound and the motion and just being outside in the fresh air. He just loved it. And we got a big inner tube that he could sit in with me in it too, or a big inner tube of a jet ski. It looked like a jet ski, but it was a rubber jet ski and he could fit on the front and somebody could hold ’em on the back. So the boat trips were the highlight of his week, and his grandmother and grandfather would take ’em out and she would fix a meal for all of us. So we’d go out in the water for a while and then we’d have a picnic lunch or a picnic dinner on the lake and then come back in. And that kind of experience is something that is very different right than the norm and maybe something you can’t afford to do all the time.
(03:02):
But trying things like that that you may be pleasantly surprised is going to be a thing, and that your behavior, riddled medical problem, aggressive son or daughter is not going to like, and all of a sudden they fall in love with it and you’re thinking, oh man, finally we’ve found something that we can do as a family and that everybody enjoys and that our son or daughter enjoys just as much as other members of the family who might be out there water skiing behind the boat or doing other fun things like that. So boating or on the water activities or outdoor activities is certainly one thing that adds to the spice of life something different. Another thing is movies. Now you may think, well, nothing special about movies, but our son doesn’t watch movies. I mean, the only thing he’ll watch on TV are basketball game recordings.
(03:46):
And even then he gets bored pretty quickly. There are a few other things that some of his colleagues have gotten him to watch, but in general, he’s not real into cartoons or a lot of the other things that kids are interested in or even young adults are interested in. But one of the things that’s interesting is when he goes out with his bro group and they’re all sitting there together, it’s a different vibe and there’s a sense of enjoyment and he’s more patient and he pays more attention. And he just likes being with the crew that he’s out there doing something socially. And that’s a pretty fun, again, very different experience. And he doesn’t like to sit very long. So to get him to sit down for 30 minutes or an hour, hour and a half or two hours for part all of a movie is a pretty big accomplishment.
(04:29):
But the fact that he does it and he likes it, I think it’s because he’s with guys his own age and they sort of have this group and this camaraderie amongst themselves and they’re ribbon one another and they’re having fun and they may be snacking on different things. He can’t eat popcorn, but he can eat his pork RINs. Now, one of the things that hasn’t worked out for us was the bigger amusement parks, with the exception of Morgan’s Wonderland, which is sort of set up for guys and gals like him in San Antonio. But when we took him to Disney World, I got to know where every restroom in the entire park was. And Disney World kept those restrooms immaculate. I mean, I was just amazed where they all were. They’re hidden behind the mountain over here, or the ride over here or wherever, but they got a bunch of them.
(05:04):
And our son though just did not like it. He did not understand what it was all about. And we made the mistake of taking him into a ride initially that was a dark tunnel, I think it was the Raiders of the Lost Ark, and you drop down, which scared him to death. And the first thing you see is this giant boulder rolling at your head and it’s like, oh my gosh. And everybody’s screaming and he has no idea what’s going on because nonverbal and we really couldn’t explain to him what was happening. So that experience did not turn out well. But here’s what we’ve learned, and I think probably you’ve learned too, trying things is worth it. Not all of them are going to work out, right? That’s okay. That doesn’t mean you failed. That doesn’t mean that the Disney World experience was just a huge failure.
(05:45):
It was an attempt to try and understand well, okay, he doesn’t really like that. And we’ve since learned, as I mentioned at Morgan’s Wonderland, he enjoys that he’s outside, he can see what he’s fixing to do. The rides aren’t real severe. It’s not like you’re going up and down a roller coaster and all that kind of stuff. His buddies were there. And so that was a fun time and he got to be outside and have a picnic outside and all that. So it sort of conditions him for, while it’s not that scary, it’s something that you might get used to. So trying things that might fail initially and then tweaking it, adjusting it, and then trying a variation. You’ll ultimately, I think, discover opportunities for recreation that your entire family can enjoy that make everyone’s life a little bit more fun. And family get togethers are always a challenge, partially because of all the noise and the chaos and divided attention because we couldn’t really travel.
(06:32):
We would have families come to our house every Thanksgiving or every Christmas, which is a really tough load, especially on Kay, because we were also working at the same time. And we had lots of projects, lots of naming projects coming in during the holidays, usually we’d, everyone staying with us, we’d have all the meal prep and we had to take care of Michael. Fortunately, cousins and aunts and uncles and grandparents would step in and entertain them, and they had to get used to his aggressive behavior and they had to understand how to deal with it. But I think they really helped us out. I think they enjoyed learning a little bit more about their nephew or their grandson and how to deal with him. And his cousins, I think learned how to appreciate that a special needs individual, even one severely autistic is a real person and still someone to be fun around and have fun with, and you get a lot of joy out of being with them.
(07:25):
So the family get togethers were sometimes challenging, but I think more often rewarding and rewarding for everybody, right? Michael ended up having a good time. The cousins, the aunts, the uncles, the grandparents, they ultimately, I think all appreciated the fact that Michael was part of the family and could participate and that they could help him out too. And then the last thing I wanted talk about was just a good time hanging out with his buddies. This is something that we never really imagined Michael could do, at least I never did. I mean, when he was in grade school, he was so antisocial. He had no interest really in anybody else except himself. And then in middle school, there was just one other guy in his classroom and they got along okay, but they were generally very socially awkward. High school, the same thing. And then he started developing this ham kind of interest, special Olympics when he was swimming down the pool and everybody was yelling, go Michael.
(08:17):
Go Michael. Go Michael. He loved it. He loved being the center of attention. He didn’t really understand why everybody was yelling at him, but he liked the fact that everybody was looking at him and smiling and cheering him on. And so he grew to relish that attention. I think what that’s turned into as he’s grown into an adult and he’s now 35, is he enjoys comradery. He enjoys social interaction. He’s not intimidated by it. He certainly enjoys people cheering him on. He likes to cheer other people on. He just likes the, I think, natural comradery, social community vibe of being with others his age, that sort of act the way he does are sort of silly. So those are just a few of the thoughts and examples of why variety, even though it’s outside of the structure, that so many folks with autism crave a very structured routine that doesn’t cause any stress or angst, but at the same time, it doesn’t push them to grow in different directions.
(09:12):
It doesn’t challenge them a little bit. And while it’s uncomfortable for them initially, and while it’s certainly uncomfortable and challenging for mom and dad, like it was for us and the colleagues, if you do try different things, whether it’s a boat trip or a movie or going to amusement park or just a family get together, whatever that might be, you’ll start to see glimmers of, oh, they really like that. Oh, this is something that I think they are going to enjoy, even though it was difficult at first. And that variety, I think makes everyone life more joyful, more fulfilled, and that’s really what we’re all here about, right? We’re all here for helping one another lead a joyful, fulfilled life. Thanks so much. Talk to you again next week. See you.
