Q&A: Dianne Bilyak

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Apr. 3—STAFFORD — Author Dianne Bilyak recounts the entertaining, joyful, and challenging times of her relationship with her sister Christine, who has an intellectual and developmental disability, in her new book "Nothing Special: The Mostly True, Sometimes Funny Tales of Two Sisters."

Q: What inspired you to write the book?

A: I found myself telling stories a lot about (my sister) Chrissy and sharing them. Some of them are really funny and I wrote a couple down. She makes stuff up all the time and I wonder what that's like to live in a world where you don't need to have somebody sanction everything that you feel about yourself.

If she says she's gorgeous, she's gorgeous. If she says she has four children, well, she has four children. We just go along with it.

We're not judging her and we're not saying you can't think that way, and we're not saying what kind of label do you want? She just comfortable with herself and that's something that a lot of people aren't.

Q: Tell me a little bit about your sister.

A: My sister is not even a year older than I am. We usually call her Chris or Chrissy. Sometimes she likes to be called Christopher. She likes to change her name. She's in Groton at a group home in a supervised apartment kind of situation.

Yesterday she had music therapy because we're trying to work out some grief issues with her. One of her favorite staff people died. My father died a while ago, but it's kind of coming to the surface through the other person's death.

That's what we do on Wednesdays. She went to school. She was lucky. She was always at the cusp of whatever was happening in the State of Connecticut.

My mother was an advocate for her. She was in a lot of groups and things. They didn't know she had Down Syndrome until she was almost 4. She went right into a program and then into another program at another age. She was able to go to the Gengras Center at (University of) Saint Joseph. They have a special program there.

She graduated from Woodstock Academy when she was 21. Then she moved into a community training home.

Dianne Bilyak

KNOWN FOR: Author of "Nothing Special: The Mostly True, Sometimes Funny Tales of Two Sisters," about her experiences living with a sister with Down syndrome; poet, advocate for the disabled.

HOMETOWN: Stafford.

EDUCATION: Graduated from Eastern Connecticut State University. Has a master's degree in education from UMass, a master's in religion from Yale Divinity School, and studied at its Institute of Sacred Music.

BACKGROUND: Was an editor at Science Writers Books, part of Chelsea Green Publishing in Amherst, Massachusetts.

CURRENTLY: Not working because of COVID; promoting the book. "Nothing Special" is available at HFSbooks.com (published by Wesleyan University Press); Amazon, Barnes & Noble.

CONTACT: www.DianneBilyak.com

Her big claim to fame is that she was at the World Special Olympics one year when she was about 14 or so. She was swimming and her buddy was (actress) Susan St. James. She loves going there.

One day she came back from Special Olympics and she said, "My name is Dr. Irma King," and we were like, all right, but how did you get the degree? She's like, "I got it at the college." A couple times a year you go to college for the weekend, do your Special Olympics, and she took it one step further and said, "I've also been earning a medical degree on the side that you didn't happen to know about."

Q: What are Chris' interests?

A: Bowling, swimming, SpongeBob SquarePants. Both of us love SpongeBob SquarePants. She likes to cook and help with cooking. She likes coffee. She used to like to do homework. She is going back to that again to help her memory.

She likes to be with people and that's why this has been so hard for her and people like her, to be stuck inside and not socializing.

I'll go to Groton. I don't know anybody there and I'll take her over to the park or go for a walk and people are like, "Hi Chris." She's only been here for a few years and it's not a small town, but she's so friendly, she'll talk to anybody. I think she misses being around people and socializing.

Q: What was it like growing up with a Down's sister?

A: She has my mother's personality, which is very outgoing and friendly and I'm shyer. I'm a reader. She was like this little ambassador who could get anything she wanted out of anybody because we were either related to them or somebody else in the family was related to them.

Q: When did you realize that she was not like all the other children?

A: I think I knew that I had to take care of her in a different way because I would speak for her if people didn't understand what she was saying. About maybe 6 or 7 somebody said your sister has this thing called Down Syndrome, but at that point I didn't know it had a name.

I knew she was treated special, but I thought that was because it had something to do with me, not with her. We had some cousins that we played with all the time and they never treated her differently. I would say that school changed things.

Q: Was it hard growing up and dealing with the sometimes prejudicial behavior by children toward someone with a disability?

A: Intellectual and developmental disability. IDD, that's the new term. I didn't see any of that. We were part of the community. When we would go other places, yes, I could hear a kid, maybe I could see them staring, I could hear other people say what's wrong with her? Why does she talk funny, that sort of thing, but in town, it was very rare to have any of that. She hung out more with adults. She was better with them. She's like a love magnet. She's so happy all the time. Not always, but being out in the world, that makes her happy. She would be out in the world and then she feels like she has a big party and the party's for (her).

Q: Did you reach any point where you thought having a Down sister was too much?

A: That was that was probably around seventh grade. In the house, I would be frustrated by having to do more stuff and by eighth grade my mother would go do things and I would be left with her. I was in charge and, of course, my sister resented that, so we would fight. Eventually I started to resent all of that stuff. My mom didn't make me stay home too much to do things. I was able to go off with my friends, but I was expected to be more of a helper, even in the house in general. My father was a chef and he worked out of town.

Q: How did you reconcile it?

A: Back then I didn't. It didn't occur to me until in my 20s. Out in the town the only time she would embarrass me was when she would go up to a strange guy and say, "My sister likes you," those kind of embarrassments.

I had to go to therapy for other things, but I never really talked about my sister very much and this book was sort of working all that out.

Q: How often do you see your sister?

A: Probably twice a week.

Q: Does she have that same joy when she sees you?

A: Not always. She might say, "'I'm fine. Why are you here?" Because she might be watching a TV show. Then we get out and she's like, "Can I stay at your house tonight?" She had a CAT scan recently and she has an older brain. She is starting to experience — this is very sad for me — some dementia, or at the very least a trauma response to lock down.

Q: What is it that you hope people will get from the book?

A: Several things. I hope parents who read it who have children with IDD or disabilities will always make sure that they're checking in with their other children.

The second thing is for other siblings to read it and see if you find some of your own stories in here and consider telling your stories as well, because people with Down Syndrome are living a lot longer. People with other disabilities are living a lot longer.

The siblings eventually take over when the parents aren't here anymore. They've got to work to make sure that they're a non-typical child, or whatever, as independent as can be and that they're working toward that. That's really big.

They should stop with the whole "special," as in "better" than. It doesn't help the child.

One of the things that they see in transitions, at 21 a person with a disability or IDD or different types of disabilities, they transition into adulthood.

Different people come and go and now they're in the world and maybe there's not money in the funding in Connecticut in order to house people right now, or have decent jobs or get the kind of job coaches and things that you need.

There's a reality that comes up for parents and siblings and also the individual. The problem with it is, you want people to treat your child as normal as possible, but then you want to call them a "special miracle." How do you marry those two things together when everyone else has gone off to college and getting married and things like that? You're not that anymore. Now you're working at the Big Y bagging groceries.

Another reason I wrote the book is because my sister is super funny. I was just on a panel for a conference called AWP, Associated Writers Program. We all talked about humor and disability and the fact that it's taboo.

My friend Dorian said, "The coolest thing is that you don't leave your sister out of the story, because she's as funny as all of you are." That's the inclusion right there. By teasing her and kind of poking fun at her, we're opening up that to hopefully in some way not make fun of people, but to say if you get to know people they're much more complex and actually funny.

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