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 Real MVP: A Love Letter to My Wife and a Autism Parenting Tips
This season of life has been… well, let’s just say it’s been full of surprises. Lots of challenges, tons of emotions, and a whole lot of learning. But one lesson has really stuck with me, and it came from a pretty unexpected place: football. Let me explain how it all connects to raising my amazing son with profound autism.
I’ve been following this rookie quarterback for the Washington Commanders, Jayden Daniels. He’s having an incredible season. But what’s really cool about him, besides his obvious talent, is the influence of his quarterback coach, Ryan Porter. Ryan has this saying: “Kiss the ugly girl.” Sounds weird, right? But it’s actually about making the most of every opportunity, even the messy, challenging ones. Jayden Daniels does this in his games. When his main receivers are covered? He doesn’t give up. He finds another option, or he just takes the ball and runs with it himself. He embraces the “ugly” situation, makes the best of it, and gets the job done.
And that got me thinking about my own life, about being a dad to my son with profound autism. Because let’s be real, raising a kid with profound autism isn’t a game with clear rules or a guaranteed win. There’s no cure, and a lot of times, it feels like there’s no winning at all. But that doesn’t mean we can’t play the game better. And in this crazy metaphor, I’ve realized something important: the real MVP on our team isn’t me. It’s my wife.
The Unsung Hero (aka My Amazing Wife)
If you haven’t experienced the reality of raising a child with severe autism, let me give you a glimpse behind the curtain. My wife, Kay, has been the rock of our family for 35 years. What she does every single day is nothing short of heroic. I might show up for the tough moments, but it’s Kay who’s always there, facing the unseen challenges that come with this life.And as much as I’d like to think I’m the MVP, I have to admit it: I’m not. Kay is. Here’s why.
The Daily Grind (That Never Ends)
Being the dad of a profoundly autistic child means facing challenges most people can’t even imagine. Our son has very specific needs, and those needs don’t always follow a neat, predictable schedule. When Kay and I were first starting out, I didn’t truly get how much she was juggling. I was working, providing for the family, and thinking I was doing my part. But then I started to see all the things she was handling when I wasn’t around.
She was at 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 who stepped in and made sure things got fixed. She knew exactly how to handle the speech therapist, the occupational therapist, every single person who worked with our son. She didn’t just sit back and let them do their thing. 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? That’s when the real work began. There were staff to schedule, staff to train, and staff who sometimes just… didn’t show up, leaving Kay to pick up the pieces. But she never backed down. She embraced the chaos, just like Jayden Daniels embracing the “ugly girl” on the field. It wasn’t always pretty, but she made it work.
The Everyday Moments (That Take My Breath Away)
I’ll never forget this morning. I was getting ready to give our son a shower, and he woke up with that look in his eyes—the one that tells you it’s going to be a tough one. I knew he was going to be difficult, so I did what I always do: I yelled for Kay.
Now, I know, I know, as a dad, I should be more proactive. But sometimes, I just… can’t. Thankfully, Kay always can. Within seconds, she was downstairs, calmly assessing the situation and getting him into the shower, even though he was still stressed.
But she didn’t stop there. He was still agitated, so she used this technique she learned from the occupational therapist. We have this special triangular pad that helps him relax. She laid him on it, put a puzzle in front of him, and gently rubbed his back. I was amazed at how easily she handled it. I hadn’t learned that trick, and honestly, I don’t know if I could do it as well as she does.
And then she took it a step further. She knew the back rub wouldn’t be enough, so she sat him up in a chair and did this special “push down” thing, putting her hands on his head and her elbows on his shoulders, applying firm pressure. It helped him relax almost instantly. These are things I couldn’t do without her.
The Little Things (That Mean Everything)
And then there are the little things Kay does every single day – things you wouldn’t even notice unless you were really paying attention. Our son has a new iPad that he uses to communicate, but the covers we bought kept breaking. Kay has fixed them so many times, cutting, modifying, gluing things together… just to make sure the iPad works for him.
I remember this one time, the iPad cover had this molded pin holder that blocked the stand. Most people would’ve just returned it or given up. Not Kay. She got out her scissors, her screwdriver, her knife… and in no time, she’d customized the cover, even gluing the pieces together to make it work. It was a problem, an “ugly” situation, but she kissed it, just like Jayden Daniels on the football field.
The Coach, The Trainer, The Physician’s Assistant (Is There Anything She Can’t Do?)
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, making sure they understand his needs, how to manage his behavior, and how to help him learn. She’s the one who trains new staff, creating binders full of instructions, videos, protocols… all to make sure our son gets the best care possible.
She knows his medical needs better than any doctor. When he’s congested, she knows exactly what to do – how much Flonase, when to give it, when it’s too much. She knows the diets that can help reduce seizures. She monitors his health every single day. It’s like a full-time job, but for her, it’s just… life.
The Superwoman I Married (Seriously, She’s Amazing)
It took me 35 years to fully appreciate just how incredible Kay is. I always knew she was amazing, but I never truly grasped how much she was doing until I really stopped and looked. She’s the glue that holds everything together, and I’m constantly in awe of how she handles the challenges of raising our son.
She’s the unsung hero of our family. She’s the one who keeps kissing the ugly girl, making the best of every tough situation. And for that, I’m eternally grateful.
So, if you’re a dad out there, and you have a wife who’s holding down the fort, take a second to appreciate her. Don’t wait 35 years like I did. Tell her how much you appreciate everything she does, big and small. She’s not just your partner; she’s the MVP of this crazy game we’re playing, and she deserves all the recognition in the world.
Final Thoughts (From a Grateful Husband)
If there’s one thing I’ve learned from all this, it’s that parenting a profoundly autistic child isn’t a game you can win, but you can definitely 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 single day, no matter how tough it gets.
In our family, that’s my wife. And I hope that by sharing this, other dads and families will take a moment to appreciate the unsung heroes in their own lives. Let’s celebrate the MVPs – the ones who kiss the ugly girl and make the best of every opportunity, no matter how difficult it seems.
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.
