In this Our Parent Journey episode, Mike Carr shares how trusting his son’s care team and focusing on long-term goals, rather than micromanaging, led to better outcomes. He highlights the value of ABA therapy in handling attention-seeking behaviors and celebrates his son’s unexpected progress, like mastering rock climbing. Mike encourages parents to adopt patience and a goal-focused approach for their child’s growth.
Transcript:
Mike Carr (00:08):
Welcome back to another episode of Our Parent Journey from transition to transformation for adult children that are profoundly autistic, severely autistic, level three autistic. They’ve got lots of challenges, and we promised on the last episode, we started giving you some very specific guidance and suggestions. So that’s what I’m going to do today as a dad. I have a 34-year-old profoundly autistic son, and this is probably one of the most important things I’ve learned in one of the hardest things for me, and I apologize in advance. But for instance, my son got up at three 20 this morning, so I’ve been up for a while watching him on the camera and everything. But I think back to the early days, and one of the things I learned as a dad was I tend to be a one driver personality type, very much in control. I want to solve problems quickly, all about just get it done.
(00:53):
Let’s quick messing around. That was sort of the strategy in the style that I had for our son when he was growing up, and I learned quickly that that was just terrible. It was not the way to go. So for all the dads out there that are frustrated with the speed of change, and well, this program isn’t exactly the way I want it. I really need it to be done this way, this way, this way, my advice to you is to chill. Now, I know that seems ridiculous. I’m a very hyper person, and you probably have some of those same tendencies too, but if you just sort of let it happen, if you find some folks, some people that have the right training, we have A, B, C, B, A, we have other folks that have advanced degrees in special ed or different kinds of therapies, and you let them take over the program and do it the way they recommend, the results are so much better, and you don’t have all the staff turnover.
(01:42):
I mean, I was so micromanaging we couldn’t keep people very long. I was driving ’em crazy. Why wouldn’t you do it this way? Well, I would do it that way. I wasn’t listening to them, and that was awful. So the biggest thing, biggest thing by far is trust your team. Trust the folks and not focus so much on what they’re doing every day or how they’re doing it every day. But what’s that end goal? Where are they going? So I’m going to give you a couple examples, right, because easy to talk about this in the abstract. So one thing I learned very quickly is how counterintuitive behavior therapy a, a applied behavior therapy is, right? As a parent, as a dad, and I can remember how I was raised as a child, if I saw my kid doing something wrong, I was going to get in their face and have ’em change it.
(02:23):
Why are you doing that? Quit doing that, and I discipline, and I’d really make sure that they understood. That was not accepted behavior. However, for the profoundly autistic, the severely autistic level three autistic, and our son in particular, a lot of others like him, that is absolutely the opposite of what you need to do. And they’re doing something to drive you crazy. You don’t react. And that is so hard. It’s so hard for me to do, but they’re looking for the juice. They’re looking for anything that gets a reaction from you. They don’t care whether it’s positive or negative, they just get their juice. I got dad react. I got him to say something to me. And so you end up encouraging the behavior that you actually want to discourage. So one of the things I’ve learned, it’s been very hard, it’s taken me lots of years, and I’m still not great at it, is if Michael, our son, does something that just drives me crazy and he knows it drives me crazy, he’ll look at me.
(03:10):
He’ll do something like, he’ll throw some stuff on the floor, he’ll look at me for a reaction, or he’ll throw his puzzle on the floor, all the pieces scattered right before he goes to bed and all over the floor. And he wants that reaction because as soon as he gets that reaction, he goes, oh, I got him right. And then he does it again and again, if I just ignore it, I just pay no attention to it. Well, there’s no fun anymore, and he stops doing it. So that was one of the things that I learned that was so hard for me to learn. And so non-intuitive really for me was don’t react. Don’t try to discipline. Don’t try to provide any attention at all unless it’s a safety concern right now, if Michael was walking out in the middle of a busy street, I’m going to react.
(03:47):
I’m going to scream at him, and I’m going to come yelling and get him out of that street. But other than a safety issue, you just have to let it go. And the staff, all our trained staff were just shaking their heads at me, and they finally got me to see the light there. And then a lot of the activities they recommend, I just thought were totally worthless. He went to this climbing gym, and I mentioned this early on in an episode, but lemme give you a little more color here. I mean, Michael doesn’t even understand holding onto things. You give him something and if he wants it to hold on, but if he doesn’t want, he’ll just let go, right? And so the whole concept of him going to a climbing gym and learning how to climb, I thought was ridiculous. Insane. He’s not going to like to do it.
(04:21):
And so the BCBA Hayden said, oh, well, let’s give it a try. Just see what happens. And sure enough, the first day, nothing, man, he wouldn’t put his foot up on the wall. He didn’t understand putting his hand, but they didn’t give up. And so day after day, week after week, they worked with Michael and he loves food. And so they motivated him with food. They put a little piece of candy or something right above his reach, and if he got there, then whomever was alongside him on the wall would actually give it to him. And so he learned that by climbing, he would get rewarded as he made it up the wall. Well, guess what happened? Now he can climb a 30 foot wall by himself without any incentives, and he loves it. He looks forward to it, and it’s exercise and it’s social because he’s got other buddies that are profoundly autistic or level two autistic, a little higher functioning that are right there alongside them with him.
(05:06):
And then he comes alive in those social settings and they start acting like bros, right? They’re doing things that anybody that’s in their twenties or thirties while other guys start to do that we never saw before, that I never saw before. So before you freak out and before you say, oh, that’s never going to work, or I think that’s the most ridiculous thing I’ve ever heard, or Man, I’m going to get in the middle of that thing, trust your team. If I had to give you one piece of advice that I have learned that has probably been so valuable, get out of their way. I mean, you have to hire folks that have the right spirit in mind, the right challenges in mind, how to address them. But man, if you just trust them and let them go and keep your eye on where I want Michael to be, not so much. How does he get there? I think you’re going to be delighted with the result. Talk to you again in a week or two. Bye.
