Recently, we had the chance to meet with Jennifer McGee, an artist, autism parent, and now children’s book author who has been caring for her nephew Isahiah since he was 15 years old. Like many individuals with profound autism, Isahiah relies on his guardians to help him meet his basic daily needs for food, hygiene, health, and safety. When Isahiah came to live with Jennifer and her husband, Brandon, he had no functional way to communicate and very few independent living skills. Acting not only as his guardians but as his advocates and biggest supporters, Jennifer and Brandon helped provide Isahiah with the therapy and services he needed to develop new, critical skills. Through a steady routine of ABA (Applied Behavior Analysis), Speech, and Occupational therapy, along with PECS® (Picture Exchange Communication System®) and other AAC (Augmentative and Alternative Communication) use, and gradual exposure to community activities, Isahiah has developed many functional communication and meaningful life skills. Rather than dwelling on what Isahiah can’t do, his family focuses on all of the successes he has accomplished and the joy he brings to their family. To help children understand what communication can look like for a non-speaking person, Jennifer has written a book called, Izzy Can’t Talk.

OUR JOURNEY WITH ISAHIAH

Q: Tell us about your journey with Isahiah

Jennifer: Isahiah is my nephew. He’s my sister’s son, and I was actually in the room when he was born. He changed my life then. He’s really amazing. And I knew early on that something was wrong. He was diagnosed [with autism spectrum disorder] at three. He never received any therapy. And I would ask, “Isn’t there something that can be done?” And it was always, “No.” When he came to live with us, we had no idea how to help. That’s when I began to really understand what his diagnosis was and the ways to go about helping him be able to really interact. He was at such a level, no play, really just in his head looking around, and of course not being able to communicate. Honestly, knowing what I know now, his behaviors were so mild in comparison to other people with his level of disability and not being able to interact or have any of his needs met. Why did nobody see that help was available?

We found out that ABA was the gold standard for autism and for his level of need. And we were very fortunate to find, especially because this was the year of Covid, a private company that was amazing, and they taught us how to teach him. And so that’s how we began even being able to interact with Isahiah. His BCBA (Board Certified Behavior Analyst) said that she had never seen a child like him, that she really had no idea how to motivate him because he’s not interested in toys, he’s not interested in tv, he’s not interested in video games, just nothing! So, we started with candy, gummy bears, and that’s how we began using PECS, because he loves gummy bears. That’s how we began to motivate him and to begin having more interactions.

 Q: Did the ABA company provide services at school, home, at a center, or all three?

They came to our home every day for eight hours a day, and we worked on everything, just getting him up, doing his morning routine, teaching him hygiene skills, table manners, and skills like putting away silverware, sorting. We were also introduced to Speech Therapy and OT and were going to a center, but unfortunately the center primarily just sees smaller kids. Isahiah was going from not having any demands placed on him to, okay, now you’ve got to do stuff. And so, there were these episodes of just meltdowns. And when a toddler has a meltdown, it’s not the same as when a 16-year-old has the same toddler meltdown. And so just for safety concerns, they didn’t want to see him at the center. And we still struggle to find providers that can see him because of his age. We actually had a lot of people tell us that he’s too old, that they can’t do anything, he’s just too old. But again, the ABA company that we had, CPABA Therapy, they were so amazing, and I still reach out to her when I need her, and they taught us so that we could teach him.

Q: What is Isahiah’s life like now? Does he currently receive any services?

He’s getting speech therapy. We don’t have an OT person for him. We can’t find one that will take him. That’s really been a struggle. And he was getting ABA, but they are shorthanded. So that’s been another [challenge]. Even those services that will take him, there’s just not enough people. So, we have limited hours, but we’re always trying to get more services.

We travel nationally for our business, so my husband and I just tag team taking care of him and working. And when we travel, Isahiah goes with us. We look for things that are very engaging for him. The first time we took him to Disney and went to a restaurant he threw a glass across the dining room, which is obviously dangerous for him, and dangerous for other people. But now, we go in and out of restaurants all the time. But we’ve had to work at it, and we know his behaviors, and we have our routines. So, when we go to a restaurant, we immediately go to use the bathroom. We sit in a booth where my husband or I sit beside him, and we just know how to do it now. At first, we didn’t know how to get him to fly on an airplane. We did many trips to the airport just to practice, which was great. Delta has a great program where you can actually get on the plane, meet the pilot, but you’re not flying anywhere.

DEVELOPING COMMUNICATION SKILLS

Q: Can you tell us about his communication?

I mean, we certainly have a lot to learn still. I was really surprised because PECS specifically was in his IEP (Individualized Education Plan) all of the years that he was in school, but it wasn’t until our BCBA got involved, and told us they’re not doing PECS correctly. They weren’t really doing it at all. And I think that’s really a big part of it, if you’re not doing things correctly or if people aren’t making progress, like in our situation, they just weren’t pivoting and trying to see, okay, what will work? They really just gave up on him. But our BCBA insisted that we actually have the official PECS training. We went through the course, which also taught the teachers the correct way to do PECS.

The picture cards are also really good because no matter what, whether it’s because we don’t have his charger or because they’re super easy to transport, we keep them in his book bag and it’s easy for him to bring us a card. And then of course his speech device is his voice. And so, we’re hoping that with continuing to work on that, one day he’ll really be independent on his speech device. He primarily uses one word at a time. We have worked so hard on the speech device with “I want”, and “I want more,” but primarily it’s just one word. But he is still growing that [skill] and the words that he has learned, he’s really retaining, which is really good. Occasionally he will on his own, do “I want to eat,” but mostly we prompt him with the “I want,” and then he’ll do “to eat, drink.” He loves to take a bath, so he’ll do “bath” independently. And I remember we were at a restaurant one time and it was a Mexican restaurant, and Isahiah had eaten his food, he had a burrito, and the waiter was delivering tacos to the table beside us, and he was all in their business, and he hit “taco” on his speech device and we just melted because that was really, really cool! He had never done that before. He wanted a taco, so of course we ordered him a taco and we were just celebrating him.

FUNCTIONAL ACTIVITIES AND LIFE SKILLS

Q: At Pyramid we always consider what is going to lead to greater independence and the most fulfilling life. When we think of success, we always talk about success meaning joy and enjoying lots of activities- it sounds like you are doing all those things to make his life successful, more independent, and full of joy.

That’s why now I want to help other people understand and to give hope. You don’t need to give up. There’s hope. And for Isahiah, we found success, and now, for example, he can brush his teeth. He still can’t do it completely independent, but he’s doing it and that makes him feel good. He can go to the refrigerator and get out the tea and pour himself some tea. That’s a big deal. Whereas before he couldn’t do that at all, and now I know, “Oh, you want tea? You don’t want orange juice.” So that’s huge in his quality of life. And that’s really my motivation for writing the book. I’ve also created some other art that I feel is about promoting self-worth for people who are disabled. I want it to be more common to see disabled people in community spaces and for there to be more accessibility, because that’s the big thing for Isahiah is he just doesn’t have access.

When we go into a convenience store, he likes to get a drink. He gets the cup, he gets his own ice, presses the button, I mean, he loves it! But there are times when it is too much and we know the things to look for and how he’s behaving. And so we just have to go, okay, everything stops and have a break. My goal is hopefully not only to help people understand, but also to help parents who are terrified to take their kids out because they’re going to have a meltdown…because what are people going to say? And that’s heartbreaking to me because they deserve to be out in the community. And yes, you may have to wait a little bit longer at the airport. Yes, you may have to have more accessibility and patience, but it’s definitely possible. So we need the community side being more understanding, and then also on the parent and caregiver side having the confidence that it’s okay to get out.

IZZY CAN’T TALK

Q: Can you tell us more about the book you wrote, “Izzy Can’t Talk”?

I’m really a teacher at heart, although my career is as an artist. I just feel like everywhere we go, kids are looking at us and people ask questions. And so I thought, it would be great to just write a book. And I wanted it to be very happy and funny. I don’t want people to feel sorry for Isahiah or for any disabled person. I want you see the capabilities. The first book is called Izzy Can’t Talk, and it really dives into [the main character, Izzy] he’s nonverbal and the ways that we communicate. So he wants, in the book, he lives with his Aunt B and Uncle Gus, and Aunt B is making a pie. And Izzy loves the pie, but he can’t speak. So, they’re trying to figure out what he wants, they know that he wants something, but they don’t know what he wants.  He runs off into the other room and he starts flipping the light switch, and so they just totally don’t know what he wants. So, they’re just guessing. What could he possibly want? It goes from his aunt signing to him, to his uncle giving him a picture card, to his service dog bringing over a speech device…Finally they are able to understand, he wants to eat the pie!

CONCLUSION

Q: What are your hopes for Isahiah’s future?

I just want to see him keep growing. And for example, we were traveling, we were at a laundromat, and he was playing peekaboo behind the washers, and I started crying because he doesn’t usually play like that. So, to see him laughing and playing was so special. And yesterday, we were shopping, and his job is to push the buggy and to pay when we leave, but a couple of times he let go of the buggy and he’s like, “Ha, ha, ha.” So that playing is really cool and it’s him interacting with me. I hope that we’re able to continue that and have more interactions together.

Jennifer McGee’s first book, Izzy Can’t Talk, is available in hardcover and e-book on Amazon and other book sellers. Learn more about Jennifer’s mission to create inclusive art on her website https://inclusivearthouse.com/