Discussing intellectual disability and neurodiversity with children

Jessica Rolph is joined by Dr. Kate Barret and Dr. Terry Jo Bichell to bring listeners the backstory behind “Uncle Rob’s Pizza Party,” a Lovevery book about a toddler’s relationship with a man with Angelman Syndrome.

Lovevery’s Senior Advisor of Equity and Inclusion, Nicole Stamp, guides the conversation. This episode challenges some of the norms around how we discuss neurodiversity, particularly with our children.

Key Takeaways:

[2:15] Jessica explains why Uncle Rob’s Pizza Party has a special place in her heart.

[3:05] Jessica and Kate share how this book came to fruition.

[5:36] The sisters look back at their childhood growing up together with Rob and share interactions with other children around Rob’s condition, and why a book like this would have been helpful.

[7:13] Jessica and Kate talk about the process of actually creating the book.

[9:19] Jessica talks about the photoshoot for the book, which became her favorite day ever at work. 

[10:47] Terry Jo shares her experience with Angelman syndrome.

[12:03] Terry Jo talks about the relationship between her son Lou, diagnosed with Angelman, and his nephew, Elio.

[15:52] Terry Jo shares what is important for a family to know If a child is showing any traits that could be markers of Angelman syndrome or any other cognitive diagnoses.

[17:51] Kate, from her background in occupational therapy, shares her advice for families who think that maybe their child is exhibiting behaviors that might be associated with some kind of diagnosis.

Transcript:

Nicole: Hi, Jessica, I’m so excited to be interviewing you.

Jessica: This is so fun for me, I love being in this seat and not in the seat that you’re in today.

Uncle Rob’s Pizza Party 

Nicole: Yeah, well, I’m enjoying this seat too. So as Jessica said, for today’s episode, we wanted to share the stories behind how some of Lovevery’s books came to be. And today we’re talking about the book, “Uncle Rob’s Pizza Party.” So for me, one of the reasons that I wanted to work at Lovevery is that I’ve always been so impressed with the quality of the representation in Lovevery’s books, and to me, this book is a real standout. It’s included in the Problem Solver Play Kit for months 43 to 45. And this book is about a three-year-old child who visits her uncle Rob, who has an intellectual disability. She learns how he communicates, she meets his friends and they enjoy a fun birthday party together. So I wanted to interview… So I wanted to interview you, Jessica, because I think this book probably has a special place in your heart.

Jessica: It really does. So Uncle Rob, the character in the book is actually my brother and Bea’s uncle. So Bea is my daughter, she was three at the time when we conceived of this book, Rob is 38 years old, and we were able to work with my sister Kate. But of course, what was so meaningful was to be able to center Rob, and as well as our parents, Rob’s friends, and the group home where he lives.

Nicole: And we’re actually really lucky to be joined by your sister as well. Dr. Kate Barrett is an occupational therapist and associate professor at DePaul University, with a master’s in global health, doing international occupational therapy work with global populations, immigrants and refugees. Kate, it’s so great to have you here.

Kate: Thank you, I’m thrilled to be here today, this book means a lot to me as well.

Nicole: That’s great. So can the two of you share how this book came to be?

Jessica: Yeah. We were home for the holidays, and we live in a different place, and so we flew in and we were there in Minnesota together. I was so excited to be together. And Bea, all of a sudden, developed this… One of those toddler fears of one of our family members, Rob, and it was so disruptive. She didn’t want to be in the same room with him, she would kind of cry and act fearful, and it was really, frankly kind of embarrassing for me. It was really hard for us as a family, because we love Rob so much and we all wanted to, of course, be together. So it really ended up being kind of disruptive. So I remember, on Christmas morning, sitting with Kate on the couch and Rob was there, being cozy, sitting with us and Bea was not wanting to be in the same room, and I just turned to Kate and I was like, “Kate, what can we do?”

Kate: So I thought, perhaps we could write a social story for Bea and help Bea understand some of Rob’s behaviors. People with Angelman’s have a speech impairment and typically use sounds and actions to communicate in place of words. They also have a movement imbalance disorder, which makes it difficult for them to walk on their own. So Rob walks with the assistance of another person, or he can also get around by crawling around on the ground, and I think these were some of the behaviors that were difficult for Bea to understand. So I was thinking we could write a social story to help Bea understand Rob, and come up with some things that Bea and Rob have in common, as well.

Jessica: And so we thought, “Okay, what if we were to actually pivot and write a story for our Lovevery customers, to give other children examples of how they can encounter what might appear to be different. Toddlers oftentimes have fears of difference, and so we wanted to create a story that could be more universal.

Teaching about disabilities 

Nicole: So, for people who may not be familiar with Rob’s diagnosis of Angelman syndrome, it’s caused by a genetic deletion. It’s very similar to autism in some ways. It has a common genetic basis with some forms of autism, and the current view is that Angelman is considered a syndromic form of Autism Spectrum Disorder. So, it might have a different cause, but many of the behaviors are very similar.

So, Jessica and Kate, I’m curious, when you look back at your childhood growing up together with Rob, did you ever feel like there was something missing in terms of how other children are taught about disability, that you wish that maybe you could address as adults now? 

Jessica: I remember being at church and Rob would make a vocalization in a time where everyone was quiet or he would get excited about something and he would start laughing or he would be flipping pages, and I remember the eyes of children on our family. I remember everybody could have… There was a lot of love, but there was a lot of misunderstanding, especially from the younger children in the congregation. And I think that having a tool like a book or being able to experience and kind of be familiar and encounter all this kind of what’s perceived as different can be so helpful for children. They just need a frame. They just need to start to have their questions answered and understand, and then the integration is so much easier and more fluid. So I think that if we’d had… Frankly, if we’d had the Uncle Rob book, I think that it would have really, it would have really helped a lot of those moments.

Kate: Yeah, I remember those moments in church as well. I also remember going out to Brunch, and Rob is very motivated by food, and a waitress walked by our table with a basket of rolls and Rob grabbed one before anybody knew what was happening and I remember getting some dirty looks and I thought to myself, “You don’t even know how much worse that could have been.” It’s just a roll.

Jessica: It wasn’t a platter of drinks.

Kate: Right, exactly, exactly.

Nicole: I love that. What was the process of actually creating the book? 

Jessica: The first version, I would say, I wrote more from Bea’s perspective, which wasn’t really the right way to write this book. It’s really Rob’s story. Rob is centered in the story. And I wrote some of the realities, I think in the beginning of the fear that Rob… that Bea had of Rob and then overcoming that fear. And so it was similar to some of the arcs that we do in story arcs with Lovevery stories, but it really did not work in this case because we didn’t want to reinforce sort of negative perceptions, and so we rewrote the story with the goal of just being really clear and explaining to children in a kind of in a children’s way that they take in the world, how they can encounter people that might at first seem different, but then find these universal connection points.

Kate: Yeah, I think one of the trickiest things is to try to write a book about Rob and not speak for him, but to represent him as the best that you… The closest that you can to how you think Rob would want to be represented and it’s hard. There are so many times over the past 37, 38 years where we said, “We just wish we knew what he was thinking.” And so I think upholding Rob’s dignity and trying to represent him as genuinely as possible was important in this process.

Jessica: I also want to mention that Rob’s friends are other intellectually disabled adults, and it was really important that they and their families were all excited to participate and take a part in this and really kind of give consent, so they wanted to advocate to teach more people. They were excited about… Very proud of being in this book. We have some of the photos from the book blown up and are displayed in their home, and it’s just been a really special special process.

Nicole: How was the actual photoshoot? 

Jessica: The photoshoot was so fun. It was so special to be able to be with my parents and Bea and Rob and have this really… It ended up being, as much as it looks like a special day in this book where we were all together and having fun, it was like… It was triple the fun of what it looks like in the book, so we spent hours with Katie throwing balls over our shoulders into a box in the beginning of the day, the middle of the day, at the end of the day. It was really special for us to be able to be with Rob and feel so much pride in his home and in this community that he has. So it ended up being a very meaningful day, one of my most meaningful days at work ever.

Angelman syndrome 

Nicole: That’s so great. Now, today, we’re really lucky to also be joined in the studio by a wonderful guest. So we were looking for a leader in the world of Angelman syndrome to discuss this book, and we actually found, I would say, a human unicorn in the form of Dr. Terry Jo Bichell. So 22 years ago, when her son Lou was diagnosed with Angelman syndrome, Terry Jo decided to get her PhD in neuroscience, so she’s a neuroscientist and the Founder and Director of Combined Brain working to help achieve clinical trials readiness in rare genetic neurodevelopmental disorders. Terry Jo, welcome.

Dr. Terry Jo Bichell: Oh, thank you so much. I’m really, really excited to be here, and I’m relating 100% to all the stories that Jessica and Kate have been telling.

Nicole: Can you talk a little bit about your experience with Angelman Syndrome? 

Terry Jo: So my son Lou, is 22, almost 23 years old and he loves so much, being around our family. He has four sisters older than him and he has one nephew, our first grandson who’s three years old, named Elio and he loves being around Elio. He also loves food so much that a lot of times his love for food disrupts our family get togethers, because as much as Lou likes to sit next to his family and eat dinner he also likes to grab their pizza pieces right off their plate. So that book was just hilarious for us. We couldn’t believe that there was a picture of another young gentleman, so much like Lou, grabbing pizza from a three year old [laughter] exactly the way Lou does. It was amazing.

Nicole: That’s so funny. Can you talk a little bit about the relationship between Lou and Elio? 

Terry Jo: Well, Lou adores Elio. We live in different states. We do a lot of FaceTiming to try to stay in touch, but it is complicated for a three year old to understand why a grown up has a hard time communicating or playing with the same toys or wanting to grab toys. And so, it is complicated. I do think that we’ve been lucky that because of all the FaceTiming that Elio does feel that he knows Lou and Lou just loves being on any form of interaction with Elio. Elio is sometimes a little bit afraid of Lou, but for the most part, he now understands that Lou is just different and that Lou just yells a little bit when he wants something, instead of gently asking as another man his size might do.

Nicole: One thing I’m hearing from all three of you is that the way that Rob and Lou communicate is normal. It’s not necessarily typical, but it’s normal. And that’s exciting to me because I think we can all as a society, shift our ideas around disability and not see it as a problem that one person has. But what if we looked at it as an opportunity to change our environments, to change our social structures, to change our ways of communicating, so that more people can fit in? If you look at it in terms of physical disability, the problem’s not that this person doesn’t use their legs to walk, the problem is that the building has stairs at the front. And if there weren’t stairs then the way that they move wouldn’t be a problem. So, I think we can shift that framing to a lot of social dynamics too. The problem’s not that Rob doesn’t speak, or that he takes a piece of pizza if he wants to eat pizza, the problem is that the rest of us have such a narrow definition of what communication is, that that behavior is framed as a problem. And so, what I love about a book like this is that it teaches people to look for the meaning behind the behavior, look for the ways to connect with the other person, and I think it helps to make a more inclusive world, which is something that I think we could really stand to shift about the way our society views difference and disability in general.

Terry Jo: I have to say. I took the book with me to Colorado for Thanksgiving, we spent Thanksgiving, the whole family and with Elio’s family. And the book was almost as valuable for all the adults as it was for Elio. Elio read the book and we read the book to him, also with Lou sitting nearby, and he was interested in turning the pages and noticing that there were things that Rob did, that were like the things that Lou did. And I think that’s really good. It’s good for him to maybe keep revisiting that as he grows up and has more questions over the next year or so, about what his uncle Lou is all about. But I have to tell you, I think it was even more valuable for my adult children and their significant others. Because as they were reading the book, they were realizing, “Oh my gosh, Lou isn’t unique. He’s special, but he’s not that special. He’s a lot like Rob.” And so, I think that it was almost eye opening even more for the other adults in the room, to understand the family interactions in Rob’s family, and how they were just like the interactions in our family.

Kate: It’s so interesting to hear you say that, Terry Jo, because I feel like I share this book with my friends and colleagues because it even helps them understand me and my experience of being Rob’s sister too.

Nicole: Can you say more about that? 

Kate: Yeah, I think… When I share this book with others, they want to know more about Rob and it’s hard to start a conversation. You can say, “Oh, my brother has a disability and he lives in a group home,” but that doesn’t say anything about Rob or our relationship. And so, I think this book gives them a window into who Rob is, and then that gives people a window into my family and my experience growing up and it’s a big part of what has shaped me as a person and as an occupational therapist.

Nicole: There are a lot of Lovevery subscriber families who have children, who have developmental delays, intellectual disabilities, other exceptionalities. And I’d love it if we could offer some advice for them. So maybe Terry Jo, in your capacity, if a child is showing any traits that could be markers of Angelman syndrome or any other cognitive diagnoses, do you have any advice about what’s important for families to know? 

Terry Jo: As a neuroscientist, I spend a lot of time working on treating these disorders and actually looking for a way to see if there’s a way we can correct the underlying genetic problem. So I spend my whole day trying to cure Angelman syndrome and other disorders like Angelman syndrome. But I spend my evenings and weekends trying to learn how to enjoy life with a person with Angelman syndrome and help him make the most out of his life. And so, I do think that we can hold both those things in our minds at the same time that we need to do the absolute best we can to understand and enjoy, and appreciate each other the way we are. Even at the same time that we’re trying to find treatments and cures, so I always tell families of people with Angelman syndrome that, what they need to do from the very beginning is give their children as much stimulation as possible, be around as many other people as they can, try different routines and sensory inputs, try different ways of communicating with iPads or sign language, or loud noises, or pointing pictures at anything that… We want to make sure that people who have differences in their brains, like people with Angelman syndrome, have every opportunity they can to interact with the world.

Nicole: I love that. And Kate, from your experience with your background in occupational therapy, do you have any other advice for families who think that maybe their child is exhibiting some behaviors that might be associated with some kind of diagnosis? 

Kate: Yeah, I love what Terry Jo said. In Rob’s case, we didn’t have Rob’s diagnosis until he was 17 years old. We did not know he had Angelman syndrome. And Rob really taught us what he needed through doing everything that Terry Jo just mentioned, Rob showed us how he was best going to communicate, how he was best going to learn how to eat, how he loved water and swimming was good for him, and how he really needs a lot of sensory input. So the experience of going on to the Angelman website, which I would definitely refer readers to if they want to learn more, was an incredible experience after growing up with Rob for 17 years, because he taught us everything about Angelman syndrome, and we didn’t even know the word or that the condition existed.

Terry Jo: I do want to say one more thing. What was amazing to me about this whole situation, when my grandson was born, Elio, living in a different state, I can’t travel there as much as I would like because I need to be in Tennessee with Lou. And so I really wanted to have a presence in his life and I stumbled on the Lovevery subscription. My grandmother name is Mamoosh, and he’s been getting a box of toys from Mamoosh every three months since he was born. His house is filled with these toys, and we love these toys so much and all of us love them. In fact, Uncle Lou loves the toys. And when I got the book about Angelman syndrome, I couldn’t believe that it was coming from the same company. That was just amazing.

Jessica: Dr. Terry Jo, you have me in tears. It’s really incredible to be connected in this way.

Terry Jo: Thank you. Yeah, I’m a little teary myself. Sorry about that. Just… It’s a really… The Lovevery toys are a way for us to connect to my grandson. 

Jessica: Dr. Terry Jo, it’s so wonderful being with you. Thank you.

Nicole: I just want to say thank you to all three of you for sharing something that’s so personal and vulnerable and it’s really beautiful to witness. And what a joy to talk to all three of you, Dr. Terry Jo Bichell, Dr. Kate Barrett, and Jessica Rolph. Thank you so much for this conversation.  

We know that Lovevery is being used in physical and cognitive therapy, and in a variety of other professional settings. To support this work, we’ve recruited an expert council to guide how we think about neurodiversity and disability. These are experts with lived experience… from personal experience to clinical experience, academics, parents of children with exceptionalities, and those in the field of disability advocacy. I’m excited to share more about the council and how it is going to impact our work at Lovevery. Learn more on the Lovevery blog. 

Mentioned in this episode:

Angelman.org

Cure Angelman

Combined Brain