Polymicrogyria Success Stories: Meet Rob and Schuyler | Navigating Developmental Disabilities

What you like to do now that we’re in Washington DC?

 

Go to museums.

 

Go to museums? Do you like going to the museums?

 

Mm hm. Like airplanes.

 

Yeah. We went to the airplane museum. She loved that. Schuyler was diagnosed when she was three and we had been going through hearing tests and what not because her language wasn’t developing. I was working at Yale at the time. Yeah, I’m not, I always say that and people are like, “Ooh, professor.” I’m like, “No, I was doing tech support.” I was very low on the food chain at Yale but, because I was working at Yale, my health insurance was basically the Yale Med school. So, we had the opportunity to try a lot of different things that I think someone who was in a different situation wouldn’t have. And just, you know, her neurologist was like, “You know what? Let’s do an MRI. Why not?” It’s free, we got this big machine, let’s stick her head in see what we find. And that’s how she was diagnosed, and it was really hard, ’cause I think we had started off looking for, you know, a learning disability, maybe hard of hearing, whatever. And then, when the answer we got was this brain malformation that affects, what’d they say? Like, between 60 and 75% of her brain was affected by this.

 

Oh yeah.

 

And, that was hard because you gotta let go of a lot. You gotta let go of a lot of your preconceived notions. The reality is those preconceived notions are kind of dumb anyway.

 

I don’t know.

 

Do you know what it’s called?

 

It’s really long.

 

Well, what’s the short version?

 

Poly?

 

What are the letters?

 

P O L Y

 

You know you make this up. PMG, maybe.

 

Perfect.

 

So Schuyler’s disability is called Polymicrogyria. And it’s a brain malformation. In her case, it affects her speech, it affects some of her learning, ability to learn, and what else? And seizures.

 

Yeah. A little bit.

 

A little bit. But you haven’t had seizures in a while, have you?

 

There was that big one. So, yeah, she had a big one, about how many, like three years ago, four years ago?

 

Four years ago.

 

Four years ago. So how do you feel like that affects when you go out when you’re doing the stuff that you want to do?

 

It’s been a little hard. Because people don’t understand me,so, that’s why I have my iPad. So I can show people. Right?

 

Yeah. Yeah. She used to use an iPad to communicate. She did it really successfully for many years. And eventually her speech got to where she can be understood better. So, you still have it around if you need it though, right?

 

Yeah.

 

Yeah. So that has been actually kind of a success story for her because, I mean when she first started, you were really hard to understand, but-

 

When I was about, like, five?

 

About five. Yeah. That’s when you started using your speech device. So she uses it now, but only when she really needs to. And her speech has actually gotten to the point where she can be pretty well understood.

 

Yeah.

 

But sometimes people have a hard time without that.

 

Yeah. A hard time because people still don’t understand me, so

 

Yeah, anything else? Any other problems where it makes it harder? What are you pointing at me for?

 

You. Sometimes I use my iPad and people will, rush me, and people go like-

 

Oh, people are in a hurry?

 

Yeah.

 

Okay. Yeah. Sometimes trying to speak with the iPad, it’s a little slow, it’s slower. And sometimes people get, do they get impatient? Is that what you’re saying?

 

Impatient, yeah.

 

Yeah. Okay.

 

Yeah, I think the iPad is her primary accommodation now. When she was in school, I mean her IEP listed things you know, she got extra time on assignments. She got, you know, the kind of accommodations that she would get through her IEP agreements and that sort of thing. Adult life has been different. It’s been a different transition because, I think, and you can tell me if you agree, but I think that when she was in school, everything, you know, all of her pathways, everything that she was trying to accomplish in school and at home, but mostly in school. There was always accommodations in place. There were always procedures in place, and federal law obviously drives most of that. But, also being in a good school district helped. And then once she graduated and-

 

Two years ago.

 

Two years ago?

 

No, three years ago.

 

Three years ago? Oh my God, I’m getting so old. Getting so old.

 

You are.

 

You know, after she graduated, she did an internship at a hospital. And then after that she was out in the world. And what we’re learning now and navigating now is that the accommodations are limited and they are harder to find, harder to access. The accommodations that she needs now are mostly social services or, you know, getting a job.

 

Yeah.

 

And that’s what we’re working on, again, now. She was doing really well before the pandemic. And the pandemic, and then us moving, ’cause we moved across the country and started over. And so, you know, she’s kind of back where she started as far as trying to get employment assistance and, there’s a cat. Trying to get employment assistance and job coaching and places that are willing to help out with young people with disabilities. So the accommodations now are mostly looking for social services, primarily employment. And it’s a work in progress.

 

Yeah.

 

She was set up in Texas, but now that we’re in Virginia, we’ve started that whole process over again. And hopefully we’ll hear something soon. There are a lot of different programs. The one that she uses, uses a language system called Unity. The company that makes it is the Prentke Romich Company. They also made the actual original device that she used to use. And they’re probably one of the- Yeah, you bring it up.

 

It’s upside down.

 

It is upside down. But other than that, it’s a great situation. There you go! Maybe.

 

Okay.

 

All right. You wanna hold it up and you can kind of show-

 

Oh

 

Well get, here you want help? There you go.

 

[Interviewer] Oh, okay.

 

And it’s mapped out in such a way, that like subject words, and verbs and different parts of speech are always kind of in the same place. So, they call it LAMP, the application is called LAMP and it stands for Language Acquired through Motor Placement. Oh my god. I can’t remember anything.

 

Yeah.

 

Basically it’s mentally mapping where these things are so that you develop kind of muscle memory for it. It was interesting. And I wonder what this says about the industry or, this probably says good things or bad things, I don’t know. The fact that it seemed like every year in school, all the way up through her senior year and graduation, it seemed like she had a new speech therapist, every year. And it seemed like they were always young and excited, but it was always almost like a sitcom where they recast people, and you’re supposed to pretend like you didn’t notice. You know, she gets the different Darren Stevens every year.

 

I’m like, huh? Who are you?

 

And I think a lot of that has to do with, just the upward mobility of speech therapy and that people are constantly able to find, you know, ’cause there’s so much work available for speech therapists. But what it meant for Schuyler was- the bad thing was she had to start over a lot.

 

[Interviewer] Right.

 

But I think the good thing was she got a lot of different approaches. A lot of different people coming in and bring their different approaches. And I think that probably helped you.

 

Yeah.

 

Did you like working with speech therapists?

 

No. I did but it was so hard, so-

 

It was hard?

 

Yeah. I didn’t like one of them.

 

You didn’t like one of ’em?

 

No.

 

Schuyler has a skill. She can carry a grudge. ‘Cause that must’ve been-

 

I can

 

It must’ve been five, six years ago.

 

I feel maybe you get that from your dad.

 

I resent that.

 

No I did not.

 

I resent that and I’ll never forget that you said that.

 

I didn’t get it from my dad, I got it from my mom.

 

You got it from your mom?

 

My mother.

 

You might have gotten it, you might have gotten two doses.

 

How about three doses.

 

Oh.

 

One that was a huge issue. I mean, it would come up at restaurants a lot.

 

Yeah. At Taco Bueno.

 

Yeah, yeah. Was that, yeah, that was at Taco, oh, I won’t say where it was Taco-

 

Taco Bueno

 

Pretend you can’t understand her. A taco place somewhere in the southern part of-

 

Taco Bueno

 

All right, thank you. Well she was trying to order. One of the issues with the iPad, and we’ve worked around it with like Bluetooth speakers, but it’s not very loud. And even with the Bluetooth speaker, it can be hard to hear. And what Schuyler typically will do, what will you do? You’ll hold it up, right?

 

Yeah.

 

So they can see the words that you’ve typed.

 

The person went, what? I can’t read that

 

And, yeah, we were in a place and the person refused to read it. They refused to look at it. And, if there were a thing that comes up more than anything that is, I think infuriating for Schuyler, and it probably should be, is they try and communicate with Schuyler. Schuyler can’t make herself understood. So they’ll expect me or whoever’s with her, her mother or her future stepmother or friends or whoever to sort of work as a translator for her. And, I will tell you this, and this is an absolute truth. It’s hard not to. I mean, it is really hard not to ’cause I’ll see her feeling awkward and I’ll see her feeling kind of stressed. The person who’s standing there is being whatever they’re being about it. If there’s a line, and there’s people behind us who are like, “ah I get half an hour for lunch, what are we doing here?” And it’s very hard not to be like, you know what, the easiest thing to do is for me to say she wants a burrito bowl, or whatever. And not doing that has been-

 

Hard.

 

It’s been hard. And it’s been an act of advocacy that’s very complicated because on one hand it does make things harder for everybody, including her. It makes things harder for her. I’m sure that there are a lot of cases where she would’ve just been like, “just tell ’em what I want.” And not doing that, I think is, it’s the right thing to do, but man, it’s hard sometimes.

 

Yeah.

 

But, you know, I don’t have any plans to die anytime soon but eventually, you know, unless I’m immortal and don’t realize it yet she’s gonna be without me. Schuyler is healthy and happy and she’s gonna live to be an old person who’s gonna have to be understood and advocate for herself. Even now if she wants to go some place. I mean, the neighborhood that we live in now in Virginia is this really nice little small town feel. And there’s a CVS, and a Walgreens and all sorts of shops that are just right up the street. And she goes there, she can walk there and go. And what happens when she goes in and tries to order something or tries to ask a question? You know, I used to say, I’m not always gonna be there. And now we’re in the circumstances where I’m actually probably not there, you know.

 

But I can text you.

 

Yeah, you can text me, and we’ve had some of that sometimes. But, you know, allowing her, and maybe even this is a terrible thing to say, but maybe even forcing her to kind of do her own thing. Yeah, I know.

 

Mean dad.

 

And it feels mean. It absolutely feels mean. But you know, those are the instances where, you know, and I’ve heard other people say this too. That the most challenging part of disability is not the disability itself for most people, you know. Whatever the mental or physical impairments that come from a disability, those are their own thing. And they can be extremely challenging. You know, we all know that. But I think the sort of unseen challenge for most people are the kind of social obstacles that are in place.

 

I talk to him and he helps me with friends or drama.

 

Drama. A lot of times it’s just a matter of pointing her in the right direction. And like I said earlier, you know, resisting the urge to do things for her. So, I know the thing that I’m the most proud of for me, and it may not even be something that she sees, is the fact that, you know, we, and her mother, you know, and we’re still on the same page. We still communicate. We’re still, you know, we’re still doing this together. You know, her mother feels the same way. That if there’s something that Schuyler can do for herself then that’s something we push. And if there’s something that she needs support, then we’re there.

 

Yeah.

 

But I like seeing Schuyler stick up for herself to do her own thing. And that’s something that we pushed from the very beginning. And that’s hard. It’s hard because when you’re not succeeding.

 

Yeah.

 

It’s a very, you know, and it’s very frustrating for you, you know, I have like the advocate hat and the dad hat and they don’t fit up on my head at the same time very well.

 

You have the dad hat.

 

I know. That’s why I’m going bald ’cause so many hats are going on and off. You know, it’s hard when I just want her to be happy and I want her to feel safe and not feel stress. But then, at the same time, understanding that the stress is-

 

Hard

 

Sometimes, it’s hard, but it also is building something in her.

 

Yeah.

 

It’s like exercise.

 

I hope the whole family can-

 

I mean, do you feel like your mother does that with you too? That when you guys are out that she’s kind of pushing you to do your own thing? I know that.

 

Yeah. So, I don’t know if that’s something you appreciate or maybe-

 

I’m not

 

Maybe you would like to do less for yourself, but-

 

I would like to do less.

 

You know, I think part of it, my personality is kind of such that- You know, early on we got told a lot about the things that Schuyler wouldn’t be able to do.

 

Like write my whole name, tie my shoes, what else?

 

What about going to school? What about graduating from high school?

 

Oh yeah. All these things that we’re told were never gonna happen for Schuyler. And she’s done every damn one of ’em. And I, you know, part of that is that she’s smarter and better than anyone ever gave her credit for. And part of it is that she had parents who were pushing her. One of the things that you have to learn and, oh my God, any parent of a kid with a disability will tell you is that the key is just to make the mistakes. You know, you’re gonna make mistakes, you’re gonna screw up. You’re probably gonna screw up really badly sometimes. You’re gonna make mistakes that linger for years or maybe forever and you just have to accept the fact that it’s hard and there aren’t a lot of playbooks for someone like Schuyler. So you do the best that you can and every now and then you get lucky. I got lucky because she is kind of easy, you know, she’s-

 

I am?

 

Not in a bad way. “Are you calling me easy?” I mean, she does so much of the work herself. You know, sometimes I feel like all I did was give her food and keep her outta traffic. And she does most of it herself now.

 

Oh, I know that.

 

She even cooks, so-

 

[Interviewer] Wow.

The Families and Stories Campaign is a series of interviews that feature parents of children with disabilities. With topics ranging from transition to adulthood for youth with disabilities to child development milestones, parents, caregivers, and children share their individual joys, fears, and struggles with caring for and being a young person with disabilities. 

We know the journey can feel isolating; our Families and Stories Project amplifies the voices of families like yours and builds a community among us. We are here to help.