A Parent's Perspective: Helping Your Child with Multiple Disabilities Engage with the World Around Them

1. Introduction
2. Planning with Professionals
3. Stretching the Comfort Zone
4. Learning to Make Sense of Sensory Input
5. Practical Planning
6. Future Planning

CHAPTER 1: Introduction

BOBNAR: Ivan was born in 2005. We lived in Hawaii at the time. He was born with complications, but we didn't know what they were. We knew that he was having a hard time breathing, he had apnea, but nobody knew why or what was going on, so they just sent us home and they gave us some equipment to keep an eye on him: an apnea monitor and an O2 sat monitor and things like that.

NARRATOR: We see two photographs of Ivan. The first shows him as a newborn in the hospital. The second is taken a few weeks later. He is lying on a baby blanket at home. His eyes gaze up and off to the left.

BOBNAR: And by the time he was about three months old, he was breathing better, his oxygen saturation levels were fine, but that's when we noticed that he wasn't focusing on anything and he wasn't looking at us, he wasn't tracking anything. We started seeing a lot of doctors and it took a long time. He wasn't actually diagnosed until he was 13 months old with Leber's congenital amaurosis, and we had to leave the state for that.

We went to Cleveland to the LCA conference and had the testing done there, and he had the diagnosis. It seemed manageable and it seemed like the answer, like we had come to the end of this long journey of 13 months of figuring out what Ivan had and we're good. He has a retinal degenerative disorder, that's fine.

And then somebody at the conference said, "Have you ever had him tested for Joubert's syndrome?" So we started going to more doctors to get another diagnosis, and we didn't get the Joubert's diagnosis until he was almost three. That would have been after we moved to Massachusetts, so we were able to connect with the doctors here.

We went to Children's Hospital Boston and the neurologist did another MRI and found that he had Joubert's syndrome, which is a neurological disorder which means that the cerebellum, the part of the brain that controls balance and muscle tone, was small. It hadn't developed completely. So then we have the diagnosis of LCA and Joubert's syndrome.

Okay, we're good, right? We're done. We've had this long journey and now we have this diagnosis and everything's fine. And he starts preschool and everything's going along fine until he's been in preschool for about six months, and at that point, he was speaking — he was behind in his speech, but he was speaking — and he stopped talking pretty abruptly.

NARRATOR: In a photograph, we see four preschool-aged children sitting on the ground around a shallow water table. Ivan, wearing a t-shirt, shorts and a baseball hat, is in the upper-right of the picture. He reaches out with his right arm to explore an object in the water. It is a bright yellow plastic starfish.

BOBNAR: And eventually we did EEGs and found that he was having seizures, and they were seizures that we couldn't see and they were pretty debilitating seizures and they were centered in the language part of his brain. And so he was diagnosed with Landau-Kleffner syndrome, which is a third thing.

Joubert's and LCA we know are related disorders. Landau-Kleffner isn't a related disorder, so I'm not exactly sure how this all fits in to make the picture of who Ivan is, but he won the lottery, he got all three. And I'm also at a point now where I don't think that that journey's ever over.

I used to think, "We'll get to the point where we know what Ivan has and then we can just move on," and now I know that that's not how it works. It's constantly evolving. Your child is developing, they're going forward, they're slipping back. You don't ever stop with learning who your child is and how they're interpreting their environment.

CHAPTER 2: Planning with Professionals

BOBNAR: What we did was we met with a behavior specialist, which helped a lot. This would have been when he was about two, a little over two, and we were realizing that if he's going to be turning three in less than a year and he's going to be starting preschool, he's going to be around a lot of children, and he doesn't like kids. And he doesn't like being away from mommy, and he'll be away from mommy for a while.

So if he's going to be able to do preschool, we need to start working on this now. And it really did take almost a year to get him past this terror that he would have being outside, away from his house, being away from his parents, being around other children, being around strangers.

NARRATOR: We see a photo of a young Ivan sitting in a baby swing at a playground.

BOBNAR: So she says, "Right now, he associates certain things" with being outside, being around other children. "He associates fear, he associates discomfort." It's something that he doesn't like. "It's something that's really scary to him. You need to change those associations."

So we said, "Okay, let's pick these things that he likes" and go have him do them in places "where there are a lot of people and a lot of commotion" and a lot of children, "and he'll learn that being around these people" get you the things that you like, and then maybe he'll start to like being around other people."

For example, with swimming, we would go to the Greene pool and the Fernald Center, and you can go there and there's usually, you know, maybe a couple people in the pool.

NARRATOR: In a photograph, Ivan and Amber are in the pool. Ivan is wearing a blue life vest and covers his ears with his hands as he floats on his back.

BOBNAR: So it's not a big deal, he can handle it. So I asked the lifeguard, "Is there a time of the week where you have a lot of people in the pool?" He said, "We have this school come in every Tuesday afternoon and they have, like, 45 kids." "All right, so we're going to see you every Tuesday afternoon." And Ivan would just clutch and he would just hold on to me the entire time we were in the pool. He was not screaming, because we were in the water, he likes the water.

NARRATOR: We see a photo of Ivan and his dad in the pool. Again, Ivan is wearing his blue life vest and floating on his back. In the background of the photo, we see that there are a number of other people in and around the pool area.

BOBNAR: But, you know, he handled it, and we just kept doing that every single week. Eventually — again, you know, months of doing this — he was able to have as much fun at the pool on Tuesday afternoons as he would on Friday afternoons when nobody was there.

And we did the same thing with music. We would go to free library shows where they bring someone in with a guitar or down to a bagel shop where they might have someone playing with a guitar, and there'd be a lot of children there and they'd be jumping around and making a lot of noise and it was scary, but there was somebody there with a guitar, which he really liked.

And we would try to sit as close to the musician as possible so he could hear the music. The children were still there, and it was the same thing like in the pool, where he would just clutch and hold on, and he was scared, but he didn't cry because he enjoyed the music and he just had to manage the sounds of the children. It took probably ten, 11 months, but he figured it out.

CHAPTER 3: Stretching the Comfort Zone

BOBNAR: I don't want to have the point of view or the perspective that the world for my son has gotten smaller because of the disabilities that he has. I think that he still has the ability to get out and have the same experiences that other six-year-olds would have.

I don't focus on minimizing the discomfort because you have little control over that. Particularly when you're doing something like the grocery store — you need groceries, you need to go, you need food — and somehow going in and telling the grocery store to tone down the sounds, tone down the smells, it's just not going to work.

That's just the way the world is. It's a grocery store. It's more about getting him to realize that going to the grocery store isn't torture, it's okay, we can actually have some fun. We go in and the produce section is just full of things to touch. He loves avocadoes because they're bumpy.

NARRATOR: In a video clip, Ivan and Amber are at the grocery store. Amber offers an avocado to Ivan for him to touch and feel.

BOBNAR: He loves the tomatoes. We like to look at tomatoes in a box versus tomatoes that are separate versus tomatoes that are sold on the vine so he can still feel the leaves and talk about the difference. And when we go in through the aisles, he likes having a box of cereal versus a box of pasta because they feel very similar, but they sound very different. He really likes that.

And then, also, kind of getting him involved personally, "These are your Honey Nut Cheerios," and then he's sitting there in the cart with his Honey Nut Cheerios knowing, "When I get home, I'm going to eat Honey Nut Cheerios. "Don't open it at the store, because that's not socially acceptable."

NARRATOR: In a video clip, Ivan listens to the different sounds made by a box of pasta and then a box of cereal. (shaking noise) AMBER BOBNAR: That's macaroni.

BOBNAR: And when we're done, "Look, nobody got hurt!" We're all right, we're in one piece, "we're back in the car, we're going home and now we've got food," and if you can change something like that that's normally a chore into an adventure, into something that's fun, then that's even better. It can be something that's enjoyable and a learning experience.

CHAPTER 4: Learning to Make Sense of Sensory Input

BOBNAR: He can handle himself emotionally so much better. He has — what do they call it — emotional incontinence where you can't... when you start to ramp up and get really upset, you can't come back from that. He's much, much better at that now. And I can still see him... If he hears a child crying, he still finds that stressful and I think for him, being a child who can't see, and "I know there's another child here and he's crying, "I don't know why. What happened to that child?"

So I notice that he's much better at listening and thinking, and you can see him getting upset, and if somebody's there to tell him, "There's a little boy over there, he fell down. He's okay, though." You can see him process that and be like, "Okay, he fell down, he got hurt, that makes sense. "He's crying. I don't need to be upset about that," and keep himself together and not have a meltdown.

And you can see that in school too, that he's able to be in the class and hear the other children. A lot of the other kids in his class will have their meltdowns, and it won't immediately affect him, and if the teacher tells him this other little girl is crying because she's upset, but it's okay, it doesn't affect you, he's okay with that.

So he definitely... I mean, his social skills have much improved, but also just his ability to kind of think through what's going on in his environment and decide, "I can be okay with this, I'm not going to freak out."

NARRATOR: In a video clip, we see Ivan sitting on his mother's lap watching a Red Sox game at Fenway Park. It's quite loud in the ballpark and there are unfamiliar sounds and smells, but Ivan seems quite content as Amber leans close and describes what is going on around them.

BOBNAR: If we hadn't taken him out and gotten him used to being around other people and we just lived like hermits, which a lot of people do because they're afraid, they don't want their child to go out and be upset, there's a lot of things he wouldn't have learned.

I mean, just talking about the difference between the sounds of pasta and Cheerios and things like that, there's a lot of things that, you know, incidental learning that we have while we're out.

CHAPTER 5: Practical Planning

BOBNAR: Now that he's at a point where he can handle things much better, I want to give him the opportunity to try things out. So I knew that he liked swimming and I knew that he liked music, so those were places where I knew we could start, sort of a base point to start from. But now I can take him to new things and say, "Well, let's find out if Ivan likes this or not."

NARRATOR: In a video clip, Ivan rides on a carousel horse at a local fair. Amber stands next to him as they circle around.

BOBNAR: So we focus on the things that he likes, we'll go try new things and if he doesn't like it, we'll leave. That's fine. And then in preparing to go out, we always pack our bags. Always. I've learned the hard way: you always bring your stuff. So sometimes when you get to an event, you can just walk up to the organizer and say, "This is my child and this is what he's going to need and can we set that up for him?"

A lot of times, what you need is extra time, which isn't always difficult to fit into an event. Other times, you might want to make sure that someplace is handicap accessible or something like that, and you'll want to call ahead of time and make sure that they'll be able to accommodate your child.

NARRATOR: In a video clip, Ivan and his father are enjoying a performance of children's music at a small local venue. As the camera pans to the left, we see that they have been seated quite close to the stage and the musicians. (upbeat music playing)

BOBNAR: If you are very positive and very clear about what your child has and what your child needs, you get more.

So if you are, like, talking to a librarian or an organizer of an event, and you can be... I try to be very upbeat. I'm not asking for pity, my family's not asking for pity, we're just telling you this is what my son has, this is what his disability is and very clearly say, "These are the things that he needs, he's going to need more time," or, "He's going to need the opportunity to touch the things "that you're telling the other children they can't touch, because otherwise he won't understand what's going on."

They tend to be very accommodating. It's very rare that somebody will say no. I can't think of an instance where somebody has told us no.

CHAPTER 6: Future Planning

BOBNAR: We try to let Ivan be the person in charge of how he's going to experience any event or outing that we're at. If that means that he's going to use the swing the wrong way at the park, then that's okay, because he's experimenting with his body.

He's still... with the diagnosis that he has, he has a hard time understanding how his body works, so I'm fine with him doing things the wrong way as he's learning how he can interact with the world and how his body works. I do try to focus on keeping him socially acceptable because I think that's an important lesson, especially at being six now, for him to be learning.

NARRATOR: We see in a video clip Ivan and Amber on stage at a live performance of children's music. They are surrounded by a number of other children all jumping and dancing along with the song. (upbeat music playing)

BOBNAR: But it also means that if he wants to lay down for a second because he needs to relax, that's okay. We'll lay down for a second, even though you're not supposed to lay down. I still haven't ruled a lot of things out for him, and it's partly because we're not at the end of that journey.

I don't know what Ivan's future looks like. I don't know that the seizures might stop and his language could come back. I don't know if he's going to go to college or not. And I'm not going to make those assumptions.

That's one of the things I've learned, is I do not make assumptions about what he can or can't do now or what he will be able to do in the future or won't be able to do in the future, so I really focus on giving him all the tools that he can have now at his disposal. Anything that he can handle, anything that he can experience and get out and touch, I want him to have that now.

NARRATOR: For more information regarding Joubert's syndrome, visit the Joubert's Syndrome and Related Disorders Foundation website at: www.jsrdf.org.

For more information about Leber's congenital amaurosis, visit the Foundation for Retinal Research website at: www.tfrr.org.

Additional resources for parents of blind and disabled babies and children can be found at: www.WonderBaby.org.