From Rejection to Resilience: Building a Better Future for our Autistic Son

When Mike and Kay Carr’s son Michael, who has severe autism, aged out of school services, they faced limited options and heartbreaking rejections from programs unable to handle his needs. Frustrated but determined, they partnered with Dr. Nina Zuna at UT to create a unique program involving multiple departments. Students earned credit while providing therapy and support for Michael, fostering his growth and gaining invaluable experience. Though funding challenges forced them to scale back, the Carrs continue to collaborate with students, improving Michael’s care and sharing their journey to inspire and help other families facing similar struggles.

Transcript

Mike Carr (00:05):

We take everybody, no exceptions. Now if you're a parent of a severely autistic son or daughter, those words might be music to your ears. They certainly were to ours. When our son, Michael, was aging out of the school system here in central Texas, he was just turned 20. We were worried about what's going to happen when he hits 22 and the school's no longer going to take care of him. And that burden falls on his shoulders. Well, on our shoulders, actually on the parent's shoulders. So my wife, Kay, started doing all kinds of research and she found a program that did say we take everyone, no exceptions, pretty exciting. So she took Michael and this colleague and they went out and checked the program out and they walked in the door and it looks sort of interesting, clean and lots of folks, early adults. Young adults working at tables, doing a variety of table work.

(01:08):

And our son tends to move around a lot more than that, but it might work out. He also likes to take frequent bathroom breaks. He's nonverbal because he's level three autism. So he is got an IQ of less than 50, has very few words, nonverbal, and really needs that communication device to communicate. And he gets frustrated, right? And he pulled his colleague's hair once or twice while he was there because he wasn't sure exactly what was going on and it was a new environment and he'd been sitting too long. He also likes to pick things up and put 'em in his mouth. He has pica behavior. So something falls to the floor like a piece of chalk. Michael's down there trying to pick the thing up. Probably not the best thing to show the staff. So maybe this program would work out. So Ms. Kay and Michael were leaving.

(02:03):

One of the staff came over and said, this program may not just be what's right for you so much for we take everybody, no exceptions. Now a lot of you have probably seen or heard the same exact thing. You get your hopes up program supposedly for autism or kiddos, young adults with multiple intellectual disabilities, and you're rejected. Or even if you get in, you get kicked out right the first time that aggressive behavior surfaces, you're out of there, baby. Even though they said, we won't throw anybody out. So what to do. So we decided to start our own home program. And the challenge that we ran into immediately, not surprisingly, is staffing. And many of you have probably also experienced this problem, right? You've got a few folks that'll come in and work with your son or daughter and you've planned your date night or you've planned the night out with the couple dinner movie, whatever it is.

(03:09):

And right before you're ready to head out the door, you get the phone call and it's the colleague that was going to show up and be there for a few hours. So you could go out and enjoy a night off. And it might be something like, well, I'm not feeling real. Well, of course it's a Friday night or a Saturday night, and they may not be feeling that well in terms of coming to work with your son or daughter, but they may be feeling just fine to go out on that date or to go to that concert that their friends invited them to at the last minute. And so you negotiate with them or you beg them, well, we've been planning this for weeks. You knew we were going to be doing this. We've already purchased our tickets. We already have reservations at this restaurant.

(03:48):

That's really hard to get into. Can you please come? No, I don't feel very well or No, I've already made other plans or no, this concert is something I've been looking to go forward to for a long time. And so this problem is reoccurring and we could not solve it until we found a professor at the University of Texas, Dr. Nina Zuna, who was in the special ed department at the time that had an interest in helping us set up this program. And she was a godsend. She came out to where we were living in the Lago Vista, which is about an hour away from the University of Texas, brought a grad student and looked at our program, checked out what we were doing and thought that she could set something up with her students and other faculty members as well. So we, we physically moved our home from Lago Vista to close to University of Texas.

(04:40):

And Dr. Zuna and some of the grad students started working with our son. And before we knew it, we had four different departments involved, four special ed speech, nursing, and even some students from kinesiology. And what was so cool was Dr. Zuna and Jesse Franco, who was the speech, Dr. Jesse Franco, who is the speech professor, would give credit to their students to work with our son. And so the students would come in and provide therapy or work with our son, direct care, whatever it might be. Or he would go over there to the speech center once a week and participate in activities. They would record data. They would get together at our house monthly where we had a dinner for everybody. So the staff would come over and we'd have a meal for them and their professors would be there. We might have a dozen 15 students and professors.

(05:46):

And they would talk about their progress, what they'd learned, where they were going to be doing next. And at the end of the semester, they would stand up in front of the entire group and give a report and they would earn a grade and get their three hours of credit. So the beauty of this was these students had already made a career choice to get a degree in this area. Whether it was special ed or social work or speech or nursing or kinesiology, they had already committed that this was something they'd be interested in. So that was really good, right? They also were getting paid, not a lot. And I think the university was paying them, not us at that point in time. And that was good. And they were getting a great, and they're getting real world practical experience. So this solved a huge piece, not everything, but a huge piece of that staffing problem.

(06:36):

Now, we still had a problem during the holidays, vacations, summer, a lot of the staff disappeared. But when school was in session, we had a committed crew of enthusiastic, young, excited high energy students and their professors overseeing them that would come in and help our son make progress. And one of the key learnings that I personally had very little value or appreciation of, but sense of learned how important it was, is they collected data, all kinds of data, multiple times during a session. So what this allowed them to do and what we've continued doing is it allowed you to look at how much progress was being made, what activities was it being made on, what adjustments were made to maybe encourage progress. Were his stalled on certain days where he had a seizure and he regressed or he was just having a bad day? Well, not much progress or more aggressive behavior. And so then discussions around when those situations come up, how do you intervene? What's the appropriate action? What are the protocols for certain things that might happen? For the nursing students, they even came in one semester and they did a video, a training video on what to do when Michael had a seizure. In

Nursing Student (08:03):

This scenario, you're at Gregory Jim. I'm Michael and I'm the caregiver. And this is how you would go about how to approach a situation of Michael or having a seizure. So first say you're just out and about and you realize that Michael starts acting a little bit differently. It's really common for him to have some repetitive hand movements, maybe walking in a circle, just kind of acting off. So you're going to try to get his attention. I'd say, Michael, Michael, look over here. Look over here. And he's not following any commands, but he still has control of his body. He's standing upright. I can say, Michael, look at me. At this point, you know that he's probably having some signs and probably going to have a seizure. So you're going to want to take note and look at your clock and see what time it started. You also want to brace him. He can still stand on the zone, but you couldn't tell him to walk a certain place. You wouldn't be able to follow it. So you want to brace him and try to get him to the car, if at all possible by walking him there or anywhere that may be safe.

Mike Carr (08:52):

And so that train video was then used for all the students to see that, okay, we've got the oxygen tanks, lean him on his side, make sure he is not going to choke you, get him on oxygen and all the other stuff that one has to do when you have that kind of a challenge. So it was exciting, it was interactive. The data allowed us to show progress, identify problems, address those problems with the help of trained professionals, UT professors that had done research papers, had lots of years of experience and we had none. So that's where we are. And what happened is through no fault of the professors we were working with, we ran out of money. UT is a hungry beast. Most universities have a pretty high overhead. And it turned out that close to 50% of the dollars we were contributing to UT were going to the university overhead, not directly to our program.

(09:57):

And there was an expectation that we, I think would be able to donate more or that grants would help fund that. And there were some grants that Dr. Zuna was able to get, but we basically ran out of money and Dr. Zuna moved over into a different space. She's now the assistant director of the Texas Center for Disabilities at ut. So she's still there. She's moved up and she still is very much involved in disabilities and we still use UT students, but we weren't able to continue to fund it in such an exciting way. So next episode, I'll sort of talk to you about our journey and share with you some of the specifics of things that I personally have done wrong that I was advocating for strongly in spite of recommendations to the contrary from my wife who certainly knows better than I do on almost everything when it comes to our son. And I just wouldn't listen to her and I paid that price. So I'll share some of that with you as well as some of the things that did work so that you'll sort of hopefully learn from some of the things that worked well for us and exactly how we did them and some of the things that didn't work for us and how to correct those things. So until next time, have a joyous and great week. See you.