Creating a Home Program with Insights from our Journey with Profound Autism

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. 

Chapters

• 0:00 Introduction: Balancing Key Relationships
• 2:15 Creating Joy for the Individual
• 4:45 Empowering Care Staff
• 7:20 Building Daily Routines for Success
• 9:10 Managing Conflict with Humor
• 12:00 External Relationships: Turning Challenges Into Collaboration
• 14:30 Conclusion: Positive Outcomes for All

Transcript

Mike Carr (00:04):

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 that'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'm going to talk about three constituencies under that for everyone.

(00:53):

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. 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 get the services and the compensation that you need.

(01:37):

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?

(02:19):

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 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 her desk one day and Michael wasn't in the classroom. And like, oh my gosh, what happened to Michael?

(03:05):

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 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.

(03:52):

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. And then another thing is finding opportunities where he can be loud in an appropriate way, and you can be loud with him. So he loves basketball, so we take him to the basketball games and he can cheer just as loudly as 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 opponent 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 only cheer when the orange team scores and not the other guys.

(04:39):

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. And so what I'm talking about here is your children, your child, even your teens. Your adults might have this behavior is this kind of stuff. He's got his fingers all wrapped around these weird shapes, and he's constantly looking at his fingers and it just looks very weird. And people start to stare and notice what in the world is he doing right 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.

(05:22):

When he was little, he 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. 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, his 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, and 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.

(06:04):

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. 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 Jay 13, our nonprofit, and she can do it with all of them.

(06:53):

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. And 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. 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.

(07:42):

And this, I think, can only be built up after years of working with them pretty closely. So Ellen 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. 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.

(08:33):

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 or one of the other guys' lives. And so think about that first and really try to take on the full responsibility of the job. 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 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.

(09:15):

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 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. 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. It's easy for me to fix.

(09:49):

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. 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.

(10:42):

But then they segueway 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. The 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 adversary adversarial, the insurers, the clinics, the schools. 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.

(11:44):

So one of the keys that Kay, my wife's remarkable at is just showing some empathy, right? Trying to 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 in house that really addresses that kind of device. So what she did, she said, fine, let me research it, which she did. 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.

(12:26):

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 pit 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 technologies, which software interfaces worked 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. She had been there, done that, and she could assess and talk to 'em about, well, here's, here are the pros and cons of this device. It's a little bit cheaper.

(13:08):

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, 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.

(14:01):

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. 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, right? 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, right? 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 quite honestly, a more fun ride for everyone. Talk to you next week. See you.