In this episode, parent Mike Carr highlights the power of empathy, creativity, and community in raising a profoundly autistic child. By meeting their adult son Michael’s needs with compassion, fostering teamwork with humor and purpose, and collaborating with schools and insurers, challenges become opportunities. With positivity and collaboration, both the child and caregivers can thrive together.
Making It Fun for Everyone: A Parent’s Journey Raising a Profoundly Autistic Child

Raising a profoundly autistic child is like navigating through an uncharted wilderness. There are moments of beauty and deep connection, but also moments of frustration, confusion, and exhaustion. For my wife, Kay, and me, this journey with our son Michael has been filled with heartwarming milestones, but it’s also been an ongoing adventure of trial and error, a constant learning experience. Along the way, we’ve discovered that the key to making this journey work for everyone – including ourselves and the professionals who help us – is finding ways to make it fun.
When I say “fun for everyone,” I mean it in the broadest sense. Of course, the well-being and happiness of Michael, our son, is at the heart of everything. But what about the therapists, teachers, aides, and even the insurance companies and schools that we sometimes have to battle with? How do we make this experience something that everyone can engage with, even if it’s not always easy?
The answer, as we’ve discovered, lies in a mixture of empathy, creativity, and a sprinkle of humor. Let me take you on the journey of how we’ve learned to make it fun for everyone involved.
The Early Days: Understanding Michael’s Needs

When Michael was younger, it became clear that he was very different from other children. His autism was profound, and his behaviors – screaming, hand-flapping, running in circles – could be difficult to understand. Kay and I were determined to give him the best chance at a fulfilling life, but we had to quickly learn that the traditional ways of parenting didn’t always apply. Michael needed a different approach, one that took his sensory sensitivities and communication challenges into account.
One evening, after a particularly tough day, Kay suggested something that would become a turning point for us: “What if we found ways to make this easier – and even fun – for everyone?” At first, it sounded impossible. How could we possibly make something as complex as autism something that was “fun”? But over time, we started to see that with the right mindset, it wasn’t as far-fetched as it seemed.
Making It Fun for Michael: Turning Frustration into Connection

The first step was trying to understand Michael’s behavior, not as something negative, but as his way of communicating. For instance, his screaming was often a response to being overwhelmed – by noise, by new environments, or even by his own emotions. Rather than reacting with frustration, we learned to take a step back and ask, “What’s happening here? What does Michael need right now?”
One afternoon, when Michael’s screams seemed to echo through the house, I decided to try something different. I grabbed a soft pillow from the couch and handed it to him. “Michael, do you want to try rubbing this?” I asked, unsure if he’d respond. To my surprise, he immediately took the pillow and began rubbing it across his face. The screams faded into a soft hum. We’d found something that helped him calm down.
That moment was a revelation. It showed me that understanding Michael’s needs wasn’t just about trying to “fix” him. It was about connecting with him in a way that made sense to him. Over time, we found more strategies like this – things that helped Michael manage his sensory overload. Music was another big one. Michael loves music, and we discovered that when he was getting loud or overwhelmed, playing his favorite tunes could calm him down. We’d put on his headphones and watch as his body relaxed to the rhythm.
But it wasn’t all about calming him down. We needed to find ways for him to express himself, too. Michael may not communicate the way other kids do, but he’s got his own way of showing excitement. Basketball became his outlet. When he’s at a game, he cheers – loudly and without inhibition. It doesn’t matter who’s winning; Michael’s joy is palpable. And when he’s cheering, it’s like the whole world fades away, and we’re just a family enjoying a game together. Those moments are pure magic.
Making It Fun for the Therapists: Teamwork and Humor

As Michael grew older, we started to build a team of professionals who could help him develop communication skills, manage his behavior, and learn new things. We had doctors, therapists, teachers, aides – an entire network of people who were dedicated to helping him thrive. But as much as we appreciated their expertise, we quickly realized that these professionals needed support, too.
The job of helping a child with profound autism is demanding. It’s emotionally taxing, and it can feel like progress is slow. It’s easy for the team to feel discouraged, especially when things aren’t going as planned. But Kay and I were determined to make the experience enjoyable for the team as well. After all, they were giving so much of themselves to help Michael, and we wanted them to feel appreciated.
We started small. Instead of focusing on the things that went wrong, we celebrated the little victories. When a therapist made progress with Michael on a new skill, we made sure to acknowledge it. “You did great today,” we’d say, offering a smile or a simple thank you. These small gestures didn’t cost anything but meant the world to the people working with Michael.
But it wasn’t all about formal acknowledgment. Sometimes, we just needed to lighten the mood. One day, after a particularly chaotic therapy session, I made a joke about how Michael’s loudest scream was almost as powerful as a jet engine. The whole room burst into laughter. Humor became a tool for diffusing tension and building a sense of camaraderie. And when things got tough, we’d share stories of the unexpected moments that made us laugh, like the time Michael started dancing in the middle of a lesson because he was so happy. Those stories kept us grounded and reminded everyone why we were doing this – for Michael, for his future, and for the joy we could find in the chaos.
Making It Fun for the Adversaries: Turning Challenges into Opportunities

Then there are the adversaries – the insurance companies, the schools, the bureaucracies that sometimes seem to stand in the way of getting Michael the services he needs. I’ll admit, at first, we were frustrated. It felt like every time we turned around, there was another obstacle – a denied claim, a school policy that didn’t fit Michael’s needs, or a new hurdle that seemed impossible to overcome.
But one day, Kay looked at me and said, “What if we could make this fun? What if we could turn this into a game?” I was skeptical at first, but Kay’s optimism had always been a source of strength for our family. So we started approaching these challenges with more creativity. Instead of fighting the insurance company, we’d call them up with a new proposal, armed with research and a positive attitude. If a school refused to provide a certain service, we didn’t give up – we made our case, offered solutions, and worked together to find a way forward.
It wasn’t always easy, but by approaching each challenge with a mindset of collaboration rather than confrontation, we started to see things change. We built partnerships with schools and clinics, rather than viewing them as obstacles. We learned that these adversaries weren’t the enemy – they were just part of the process, and the more we worked with them, the more successful we became.
The Power of Fun: A Family Journey

Now, looking back on the years since we started this journey, I realize how important it was to find moments of joy for everyone involved. It wasn’t just about making things easier for Michael; it was about making the entire experience something that felt manageable, enjoyable, and even fun.
From the laughs shared with therapists to the way we’ve learned to work with schools and insurance companies, it’s clear that the key to navigating the challenges of raising a profoundly autistic child is not just in the strategies we use, but in the mindset we bring to the table. By focusing on connection, creativity, and humor, we’ve built a team – a family – that works together to support Michael in ways that are both meaningful and fun.
It’s not always easy, and we certainly don’t have all the answers. But one thing we’ve learned is this: by making it fun for everyone – Michael, the team, and even the people who sometimes challenge us – we’ve created a journey that, while never perfect, is always filled with love, laughter, and hope.
Transcript
Mike Carr (00:03):
This week we’re going to pick up from where we were talking last week about our home program journey, which has been quite the ordeal. And we talked about three key characteristics, last episode that we feel are really important. Persistence, just the grit you’ve got to have as a parent of a severely autistic or profoundly autistic child to put up with all the nonsense. And there are also two other qualities, innovation, being creative that we talked about, and community, right? Working with others, having a team, gaining support, getting support where you need it. But there’s another attribute or another characteristic that I didn’t talk about. It’s probably even more important than those three. And that’s make it fun for everyone. And the key part of that phrase are the last two words for everyone. So I want to talk about three constituencies under that for everyone.
(00:51):
Umbrella one’s the most obvious, right? Your child, your autistic son or your autistic daughter. How you make it fun for them. But there are two other constituencies that you also need to think about, right? The colleagues, the therapists, the folks, the team that surrounds your child or daughter, and even adversaries. And that’s a little bit weird. You think about adversaries like insurers who deny your claims. How are you going to make it fun for them? Why would you want to make it fun for them? Or maybe it’s the school that’s denying you services that you know deserve, or the clinic that wants to do it their way when there’s a better approach for your particular child, or maybe even the doctor who just isn’t recognizing the diagnosis and all the symptoms that your child has so you can get the services and the compensation that you need.
(01:35):
So making it fun for everyone isn’t easy, but it is doable. So lemme share with you some of what we’ve learned and some of the steps that we’ve gone through. So our son tends to scream a lot. He tends to be very loud, and this upsets and disrupts everybody. And on a bad day, not only will he scream, but he’ll pinch, right? So he’ll get your neck or he’ll get your arm and he’ll actually leave bruises. And maybe you’ve experienced this too, that this pinching you can’t react to because that means they’re going to do it more. But it hurts, right? And it leaves a mark. Every now and then you might pull pants down in public just to get attention. Just seems to resist everything that you want done. And so this idea of, oh my gosh, how can we make this work? Why is he doing this?
(02:17):
Stepping back, taking a deep breath and trying to understand what’s motivating him or her, and what can we do to still honor who they are, that they’re a special individual and they’re not necessarily wrong in how they’re behaving, but they need to do it in a little more less disruptive way. And so one of the things we’ve learned is redirecting, right? Redirecting, screaming, and loud noises. And so one of the things that’s worked for us is if Michael’s really having a loud day, we’ll sit him down on a couch with a pillow. He’s very tactile, and so he just rubbing that pillow really makes a difference, and he can get to be pretty obnoxious in different settings when he’s loud. For instance, at school, when he is in high school, the teacher looked up from desk, her desk one day, and Michael wasn’t in the classroom and like, oh my gosh, what happened to Michael?
(03:03):
And so she stands up and she heard this tapping from the closet in the corner of the classroom. Well, a buddy of his who’s very sound sensitive and actually wears these big over the year headphones, you’ve probably seen some of the autistic kiddos wear, maybe yours does too, wears from school every day. Michael was being really loud that day. So he took Michael into the closet, exited the closet quickly without Michael, closed the door and locked it. So he locked Michael in the closet. He goes, he couldn’t stand the noise anymore. So the teacher figured that out, but she said, look, we need to calm him down so we can sit him on the couch. Or if we just put headphones on him or EarPods, music disrupts his behavior. Even if he’s screaming, if he’s loud, there’s something about music that disrupts signals at least in his brain, and he almost has to listen to it. So instead of being loud, he has to be quiet so he can hear the music. And that has also worked really well for us. Then another thing is finding opportunities where he can be loud in an appropriate way, and you can be loud with him.
(04:07):
So he loves basketball, so we take him to the basketball games, he can cheer just as loudly his wants as the crowd’s cheering with him, and we can too. So we’re all having fun. It makes it fun for everyone except we went to University of Texas a basketball game once, and we got some great seats right behind the men’s UT basketball game, and he cheered when they scored, but he also cheers when the opponents score. He doesn’t differentiate. And one of the assistant coaches turned around and gave him the evil eye and Michael didn’t care, but we had to sort of calm him down and say, look, Michael, you might cheer when the orange team scores and not the other guys. We’re going to get in trouble and we’re going to be asked to move. Now let’s talk about stemming and how to maybe make stemming not just less obnoxious or less disruptive, but maybe even more fun.
(04:57):
So what I’m talking about here is your children, your child, even your teens. Your adults might have this behavior stemming is this kind of stuff. He’s got his fingers all wrapped around these weird shapes, and he’s constantly looking at fingers and it just looks very weird. And people start to stare and notice what in the world is he doing right? Or hand flapping? He’s got to do this kind of stuff constantly, and it’s a self-soothing behavior. It calms him down, but it looks ridiculous. And you’re thinking, what in the world is this guy doing? Or sometimes walking in tight circles, he just needs to get up and walk around or spinning on his bottom when he was little. Did that a lot. So how can we make stemming and redirect that activity? So one of the things that he enjoys doing is if he wants to walk in tight circles, we maybe get him up and have him stretch, get that, stretch it out and stretch.
(05:40):
So instead of walking in tight circles, he’s constantly stretching or take him outside for a little walk around the block, which is more fun for him and his colleague at staffer or his teacher that happens to be with him or the hand flapping. One of the things that we’ve discovered that he likes to do, even today, 35 years old, is we’ll give him a marker that’s dried out, or we’ll wrap tape around, duct tape around the tips. So he can’t make marks. He’ll just like to sit there on a table and draw, and he’s not making any marks on the table, but he likes that motion. It’s very soothing, sort of like this, but it’s like on a table or on a pad. If he’s out, he can draw on a pad or a tablet, and the sound also soothes him. So we’re looking for things instead of stemming that’s visually very inappropriate or disruptive, things that still calm and that soothe and that he can do in different settings, but don’t create the same loud noise or the weird hand flapping or whatever.
(06:33):
It’s now in a group setting, it is a little more challenging. We have a Michael whisperer. We have a gal that’s been with him for 13 years now, and it’s sort of like the dog whisperer, the horse whisperer. She’s the Michael Whisperer. She sort of just gets it and she can just look at him and get him to calm down. It’s the most amazing thing you’ve ever seen. And now we have a group of guys and J 13 are a nonprofit, and she can do it with all of them. And so there was a day where a couple of the guys were misbehaving and not acting right, and she sat ’em all down at the table and she didn’t talk loudly. She talked in a very actually low voice, but a very firm voice looking at each one of them and said, now guys, we have to behave this way when we go out into the community today and do some things, and I want you all not to be noisy and not to be loud, and I want you to do these things.
(07:21):
Every one of ’em is looking right at her, and Michael doesn’t understand what he’s saying. One of the two other guys, nonverbal don’t have that kind of verbal understanding, but they sort of sense what she’s saying, right? They do understand what she’s saying, not verbally, but just the way she talks. And so having someone like that, especially in a group setting that has that deeper connection with your son or daughter sort of understands them. And this I think can only be built up after years of working with him pretty closely. So Alan has had 13 years, as I said with Michael, it’s almost mystical, and I hate to get into the spiritual realm, but I don’t really understand how she does it. I certainly can’t do it as his father, but she can with just a look and just that very forceful, authoritative voice without raising her voice.
(08:09):
Okay, let’s switch gears and let’s talk about the second constituency. How do you make it fun for the staff and how do you address things the staff isn’t doing to your liking? So for instance, turnover, they call it the last minute. They don’t show up. You’re fixing to go out or there’s something else going on. And so Hayden, who’s our executive director, has been able to share the responsibility and make them aware of, make them more mindful and intentional in what they do and understand that, look, you’re part of a team and if you call it the last minute, that’s going to mean that one of your buddies on the team’s going to have to come in and interrupt whatever they’re doing, and it affects Michael’s life from one of the other guys’ lives. And so think about that first and really try to take on the full responsibility of the job.
(08:57):
And that might change their behavior. Is it fun? I don’t know. But sometimes it is because people are very appreciative when they don’t call in at the last minute and say, I can’t come. And they recognize maybe they’re not feeling that well, but they still are willing to come in even though they’ve got the sniffles or whatever it might be. What is fun, however, is if they are doing something else, not filling out their time sheets correctly, which is an ongoing problem for us, just an ongoing problem. And so whomever’s in charge of payroll has to constantly get in there and fix the time sheets so they get paid properly, and we remind them of this over and over again and no change. So at the end of the pay period, just recognizing those folks that haven’t had any mistakes in their time sheets, maybe putting their picture up on the bulletin board, or at least giving them some recognition in front of the rest of the team.
(09:39):
It doesn’t have to be monetary, it doesn’t have to be any kind of prize. It’s just that, hey, this is someone that’s really made our lives easier and we thank them for it. And that, believe it or not, makes everyone more aware of, Hey, this is a deal. This is something that is causing some angst and some pain for someone else, and it’s easy for me to fix. All I have to be is a little bit more mindful of what’s going on there and try to help out and try to do that little administrative task more consistently every time. And so that’s actually helped these team meetings where there’s this recognition of folks that have done something cool. Another thing that’s been fun and has added an element of growth for everyone is what hasn’t worked well? What’s the most ridiculous, humorous, ridiculous, crazy story you have to tell about a particular incident, whether it was someone pulling their pants down and you had to quickly go over there and pull it back up, or Michael getting locked in the closet and how you had to intervene and sit the other guy down and say, look, you really can’t lock him in the closet even though he’s making a lot of noise.
(10:38):
And so when the colleagues shared those stories with one another, there were laughs and there were some chuckles and like, oh yeah, I’ve been there, seen that. But then they segue into talking about how would you have fixed that? How did you fix that? And so there’s this conversation where people are starting to listen to different solutions, make suggestions on how they would’ve done it or how they’ve handled that situation in the past. And so it creates this very positive vibe. Problems that seem insurmountable or frustrating or caused a lot of angst and stress and anxiety now all of a sudden are better understood and different solutions have been bantered about and discussed so that everybody has maybe some new tools in their tool toolbox to try the next time that kind of behavior comes up. Now, the last group to try to make it fun for are those that are more adversarial, adversarial, the insurers, the clinics, the schools.
(11:25):
Why would I want to do that? And so we’ve heard about how the squeaky wheel gets the grease, but what we’ve learned is the wheel that makes the ride more enjoyable for everyone is often the wheel that’s more appreciated and that people want to call upon and they develop more of a friendship and a partnership with than an adversarial relationship. So one of the keys that Kay, my wife’s remarkable at is just showing some empathy, right? Trying understand when the school says you can’t get this device that you want, well, why not? What’s the problem? Well, we don’t have the budget. Well, we thought you had this much money allocated. Yeah, we actually do, but we really don’t know what device to get because we don’t have any technology expertise that really addresses that kind of device. So what she did, she said, fine, let me research it, which she did.
(12:14):
She came back with all kinds of options, great research, and they were pretty impressed. They said, why don’t you go ahead and talk to region 13? Region 13 was the central Texas area resource for all the school districts. So she actually went to region 13 and talked to them, and I think they were so impressed with her research. They sort of gave her the job of trying all these different devices they had, and she did. And she’d bring ’em home and we’d try these things out and Michael would break it. He’d throw the thing on the floor, he’d hit the buttons the wrong way and lock it up. And so he was a destructo machine, but he also was an incredible tester of which devices, which technology, which software interfaces work the best, to the point where Kay became almost the go-to person for not just the school, but for region 13, when other moms came along with severely or profoundly autistic child and they needed a communications device and they needed some kind of technology.
(13:05):
She had been there, done that, and she could assess and talk to ’em about, well, here are the pros and cons of this device. It’s a little bit cheaper, it’s got a bigger screen, but the buttons don’t work quite as well. Or the screen itself isn’t quite as sensitive when you touch and slide things around on, here’s another device. So that idea that you show empathy to try to understand where the school’s coming from or why the clinic won’t change their policy and then offer to help in some way has really been an eyeopener for me because I tend to approach it much more as that adversarial relationship. I deserve this, I want it, and I’m going to get it now and I’m going to be in your face until you give it to me. And that really wasn’t the best approach. So just to sort of conclude and recap, I think making it fun for everyone, it includes your children, it includes the support staff, the team, the donors, the fundraisers, whomever you have to deal with, the services you’re getting from the schools, the clinics, insurers, government agencies, approaching everybody with empathy, trying to create an experience with them.
(14:04):
Every time you deal with them, it’s a little bit more light, even though what you may be talking about is more stressful. And it really is this idea that, and I guess the best analogy I can use if you know anything about tires, is think about the squeaky wheel. Okay? The squeaky wheel gets the grease. Well, the radial tire, the radial tire does make your ride more enjoyable. It tends to soften all the bumps. I dunno if you guys have noticed that. It also is quieter. A radial tire has a characteristic of, it absorbs more of the noise. And so it’s this idea that it’s quieter, it makes it more comfortable, it’s also regarded as safer. So what we try to be, and what I’ve learned to be as a father and as a dad is not the squeaky wheel, even though I may get some grease. But I want to be that radial tire on a wheel that provides that safer, that quieter and quiet, honestly, and more fun ride for everyone. Talk to you next week. See you.