Behind every extraordinary journey is a true MVP. For families navigating profound autism, that MVP often wears many hats. Mike Carr’s wife, Kay, embodies this role with tireless dedication—coordinating care, managing therapy, and even creating custom solutions like an iPad cover for their son. Mike’s heartfelt reflection reminds us all to honor the unwavering strength, love, and creativity that mothers bring to the table. Because behind every family’s strength is someone quietly, yet heroically, holding it all together.
The Unsung Hero: The MVP Behind Parenting a Profoundly Autistic Child
In a season of life that’s been marked by unexpected challenges and deep emotions, one lesson has stood out to me more than any other. It’s a lesson that came from an unlikely place: football. Let me explain how this connected with my experience raising a profoundly autistic child.
I’ve been following a rookie quarterback for the Washington Commanders, Jayden Daniels, who’s had an incredible season so far. What stands out about Jayden, beyond his undeniable talent, is the influence of his quarterback coach, Ryan Porter. Ryan’s advice to him is simple yet profound: kiss the ugly girl. At first, this might sound like an odd piece of advice, but it’s a lesson about taking advantage of opportunities, no matter how imperfect or challenging they seem. Jayden Daniels has demonstrated this in his games, especially when his preferred receivers are covered. Instead of forcing the play, he goes for his backup options, or when necessary, he takes the ball and runs it himself. He embraces the ugliness of the situation, makes the best of it, and gets the job done.
As I thought about this advice, I realized there was an important parallel to my own life, particularly in my role as a father to a profoundly autistic son. Raising a child with profound autism isn’t a game with clear rules or a guaranteed outcome. There’s no cure, and often, there’s no winning. But that doesn’t mean we can’t play the game better. And in this metaphor, I’ve come to realize that the most valuable player (MVP) on our team isn’t me—it’s my wife.
The Unsung MVP
For those of you who may not be familiar with the realities of raising a child with severe autism, let me offer a glimpse into our world. My wife, Kay, has been the backbone of our family’s efforts for 35 years, and the role she plays is nothing short of heroic. While I may show up for the tough moments, it’s Kay who has been there, day in and day out, facing the unseen challenges that come with raising a child with profound autism.
Now, as much as I’d like to think I’m the MVP in the family, I have to admit it: I’m not. The MVP is my wife, and here’s why.
The Daily Struggles
Being the father of a profoundly autistic child means facing challenges that many people can’t even imagine. Our son has specific needs, and these needs don’t always follow a neat, predictable pattern. When Kay and I were first starting out, I didn’t fully grasp just how much she was juggling. I was working hard, providing for the family, and thinking that was enough. But then I began to see the countless things she was managing when I wasn’t around.
She attended every teacher meeting, every doctor’s appointment, every therapy session. When the school didn’t understand something or missed a key detail, she was the one communicating the adjustments. She knew exactly how to handle the speech therapist, the occupational therapist, and every other professional who worked with our son. She didn’t just sit back and let them do their job. She guided them, coached them, and made sure they were doing what was best for our son.
And when our son was out of school, the real work began. There were staff to schedule, staff to train, and staff who didn’t always show up, leaving Kay to pick up the slack. In those moments, Kay didn’t shy away from the challenge. She embraced it, just like Jayden Daniels embracing the “ugly girl” on the field. It wasn’t always pretty, but she made the best of it.
The Everyday Moments
I’ll never forget a recent moment that perfectly illustrated just how much my wife does for our son. One morning, I was preparing to give our son a shower. He woke up with that look in his eyes—the one that tells you something’s not quite right. I knew he was going to be difficult to handle, so I did what I’ve always done. I yelled for Kay.
Now, I’ll admit it: as a father, I know I should be more proactive in these moments, but I fall short sometimes. Thankfully, Kay doesn’t. Within seconds, she rushed downstairs, assessed the situation, and calmly got him into the shower, even though he was still stressed.
But she didn’t stop there. Our son was still agitated, so she used a technique she learned from the occupational therapist. We have this special triangular pad that helps him relax. She laid our son on it, placed a puzzle in front of him, and gently rubbed his back. I couldn’t help but marvel at how easily she handled the situation. I hadn’t learned that trick, and truthfully, I don’t know if I could do it as gracefully as she does.
Kay took it further. She knew that a simple back rub wouldn’t be enough to calm him down. So, she sat him up in a chair and performed a special technique called a “push down.” She placed her hands on his head and her elbows on his shoulders, applying firm pressure. It helped him relax, and within moments, his tension eased. These are things I couldn’t have done without her.
The Little Things That Add Up
As if that wasn’t enough, there are the little things that Kay handles every day—things that go unnoticed unless you’re paying close attention. Our son has a new iPad, and he uses it to communicate. But the iPad covers we bought were constantly breaking. Kay has fixed them more times than I can count, cutting, modifying, and gluing parts together to make sure the iPad is functional and accessible for our son.
I remember when she tackled a particularly tough problem. The iPad cover had a molded pin holder that blocked the stand. Most people would have returned the cover or given up. Not Kay. She pulled out her scissors, her screwdriver, and her knife, and within no time, she had customized the cover, even gluing the pieces together to make it work. It was a problem, a seemingly ugly opportunity, but she kissed it, just like Jayden Daniels would have done on the football field.
The Coach, The Trainer, and The Physician’s Assistant
My wife isn’t just the MVP. She’s also the coach, the trainer, and even the physician’s assistant for our son. She’s constantly coaching the teachers and therapists who interact with him, making sure they understand his needs, how to manage his behavior, and how to facilitate his learning. She’s the one who takes on the role of training new staff, creating binders full of instructions, videos, and protocols that ensure our son gets the best care possible.
She knows the ins and outs of his medical needs better than any doctor. When he’s congested, she knows exactly what to do—how much Flonase to give him, when to give it, and when it’s too much. She’s aware of the diets that can reduce the likelihood of seizures, and she monitors his health closely every day. It’s like having a full-time job, but for her, it’s just another part of her daily routine.
The Superwoman I Married
It took me 35 years to fully appreciate just how incredible Kay is. I’ve always known she was amazing, but I never realized just how much she was doing until I stepped back and really looked at it. She has been the glue that holds everything together, and I’m in awe of her ability to navigate the challenges of raising our son.
She is the unsung hero in our family’s story. She’s the one who has kissed the ugly girl over and over again, making the best of every difficult situation. And for that, I’m forever grateful.
So, if you’re a dad out there, and you have a wife who’s been holding things together in your family, take a moment to recognize her. Don’t wait 35 years like I did. Let her know how much you appreciate everything she does, from the little things to the big things. She’s not just your partner—she’s the MVP of this game we’re playing, and she deserves to be recognized for it.
Final Thoughts
If there’s anything I’ve learned from this experience, it’s that parenting a profoundly autistic child isn’t a game you can win, but you can certainly play it better. And the key to playing it better is recognizing the people who make it all possible—the unsung heroes who show up every day, no matter how challenging the situation.
In our case, that’s my wife, and I hope that by sharing this story, other dads and families can take a moment to reflect on the unsung heroes in their lives. Let’s start recognizing and appreciating the MVPs—the ones who kiss the ugly girl and make the best of every opportunity, no matter how difficult it may seem.
Transcript:
Mike Carr (00:05):
We are back for season four, episode one, autism labs. And today I want to talk about games. Now, I don’t know how many of you guys follow football. A lot of you dads probably do, but gals, please bear with me. I think you’re going to appreciate this conversation. So there’s a rookie quarterback for the Washington Commanders called Jayden Daniels done phenomenal job this year. He’s had a quarterback coach since he was 10 or 11 years old. Guy by the name of Ryan Porter, who’s done some amazing things with Jayden. And one of Ryan’s tips is kiss the ugly girl, kiss the ugly girl, take advantage of the opportunities that present themselves. And Jane has done that in some of the most challenging games you can imagine, where his preferred receivers are covered. So he goes his backup or as a pass, but he has to run it right?
(01:15):
Whatever that opportunity is, as ugly as it might be, kiss the ugly girl, take advantage of those opportunities, whatever they might be. Another person I follow, Seth Godin. Seth writes lots of books and he’s written a recent book called This Is Strategy, and he talks about games. He says, look, we’re playing games every day, and it makes no difference whether you know the game, whether you even know the rules of the game. We’re playing games every day. So I want to talk to you about the game of profound autism in your child that’s severely autistic or profoundly autistic or level three autistic. I’m not sure we can win that game, right? There’s no cure yet for profound autism, but I think we probably can play the game better than we are right now. At least that’s what I’ve learned. And the first step is to recognize who is your MVP?
(02:10):
Who is your most valuable player? And dads, I’ve got news for you. It’s not, you may say, yeah, I’m doing everything I need to do, man. I’m not bringing the money. I’m going out there and working hard. No, oh, no, no. The most valuable player, almost without exception, is your wife. Now think about that. All the stuff she does when you’re not around, and I thought about this recently with my wife who’s been dealing with this for 35 years, all the teacher meetings she goes to, right? All the doctor’s visits, sharing what the school thinks that she thinks to need to be done that they’re not aware of. They’re not doing all the speech therapists, the occupational therapists, the physical therapists, just a ton of stuff that she’s having to deal with every single, it just sort of blows you away, right? And then when he’s out of school, your profoundly autistic son’s out of school, and so now you got to schedule staff, you got to train the staff, and the staff doesn’t show up.
(03:11):
So you got to have a backup or she’s the backup. I mean, just the amount of problems and unforeseen challenges that come up. Do you really think, dad, that you could handle that without her? She’s dealing with however ugly those opportunities might be. She’s kissing that ugly opportunity and making the best of it day after day. So lemme give you a couple examples. Our son got up the other day. I was down there to give him a shower, and he had that crazy look in his eyes and he was ready to go, man. He comes over and grabs me and I’m thinking, oh my gosh, what am I going to do? So what I do, that’s what I’ve always done for 35 years, is I yell, okay, I yell for my wife. Now, is that what I should do as a mature parent, as a responsible dad?
(04:01):
Probably not, but that’s what I do. So she comes running down. What’s going on? She looks around, assesses the situation, gets him in the shower, gets him shower, he’s still stressed. So we have this big styrofoam workout triangular thing that you can sort of put on the floor and you lay on it, you lay on your stomach and your chest on it, and then your arms are sort of dangling over the edges. We use this for our son. And so she got him on this thing, and as he was playing his puzzle, put the puzzle on the floor. So he’s playing his puzzle, but he’s sitting up on this triangular pad, she’s rubbing his back and he loves it and it relaxes him. I don’t do this. I need to do this, but I haven’t learned how to do this. Okay, next thing she does, sits him in a chair and she does a push down.
(04:43):
So she puts her arms over her, hands over his head and her elbows on his shoulders, and she pushes firmly down, and that relaxes him. Some that sort of de-stresses him some too. Again, something I need to do. I haven’t learned how to do that. The OT showed her how to do that, the occupational therapist. So if you’ve never seen this done before, be sure and have a trained professional show you how to do it. You can do it the wrong way and screw things up, but boy, if you do it the right way, at least for our son, big difference sort that head down, that push down and oh man, really makes his head feel better and takes that stress and tension out of his neck At night. She’s putting on an iPad cover because he just got a new iPad for Christmas and she’s done this, I don’t know, 40 or 50 times.
(05:27):
We go through iPad covers constantly. Our son’s throwing ’em across her. Anyway, she puts a stand on the back of the iPad cover. So this thing is sitting upright in portrait mode, not landscape mode, but in portrait mode so he can push all the icons because our son’s nonverbal and he needs to use the iPad to communicate well. On this new cover, there is a molded pin holder on the back that’s right in the way where the stand goes and it’s molded. It’s molded plastic. And I’m thinking, there’s no way this is going to work. It doesn’t stop her at all. Kay gets out, her knife, her screwdriver, her scissors. She starts cutting, working on it, and before you know it, she’s got a nice spot cut out. Stop puts the stand on there with some super glue. We have it booked and we have it set there overnight and she’s done.
(06:11):
And it’s just like, it’s just every day, every couple of days there’s something like this that comes up, guys. And you may not be aware of all the things your wife does, but my wife blows me away. And she is the MVP, but she’s not just the quarterback, she’s the coach. She coaches the teachers, the therapist, all the people that are involved in our son’s life on a weekly, monthly basis. Family members that come into town. Here’s how you deal with ’em. Here’s how you can help out at dinner table. Here’s how you can help. Give ’em a bath. Here’s how you can help get ’em dressed. All these things she’s constantly coaching people on. She’s also a trainer. As we hire new staff, as we bring people in, she’s doing the education, she’s doing the training. She’s got a binder full of instructions and protocols.
(07:01):
We’ve got these things on Google Sheets, we’ve got videos, all this stuff to facilitate training. She’s a pa. She’s the physician’s assistant. She knows all the medical challenges our son has when his nose is stopped up, he can’t blow his nose. He just sucks all that guck right in. So she knows how to give him Flonase to reduce nasal congestion and how much to give and when to give it. How much is too much, right? Seizures, different diets that reduce the likelihood of seizures. I mean, this is unbelievable. You start adding all this stuff up and it’s like a full-time job, times 10. All this stuff you’ve got to deal with, and she does it again every day. So I’ve married a superwoman and it took me 35 years to realize it. And I hope it doesn’t take you that long to realize how important and how great your wife is and all the things that she does, and how she kisses those ugly opportunities as small as they might be every day, day after day, and makes the best of them. So when you’re done watching this, the next time you see your wife do something that shows her how thankful you are to have her, not just as your wife, but as your MVP, your quarterback, your coach for your son, your trainer, for your son, your physical, your physician’s assistant for your son. Let her know that she is amazing and how much you appreciate her. Talk to you again next week. See you.
