The Real MVP: How Mothers can Transform the Autism Journey

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.

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.