When I interviewed Rachel Simon, author of The Story of Beautiful Girl a few weeks back, I asked her some of your questions. I've finally transcribed the interview and wanted to share with you her thoughts.
What are some ways growing up with a sister with an intellectual disability changed and shaped who you are? And do you have any advice for siblings of children with special needs? (I noted that anyone asking this question might want to read Riding the Bus with My Sister, Simon's 2002 memoir about a year spent with her sister Beth.)
Get involved with the Sibling Support Project. Don Meyer started this whole idea called "sibshops"—they're three hour, fun, game-oriented sessions with typical siblings where they are encouraged to express whatever their feelings are and to interact with other sibs. Part of it is just a meeting thing and part of it is a nonjudgmental forum for saying what they feel. I sat in on one. The SSP also sells books that would be of interest and he also runs some list serves for school educators and adults. It encompasses a great deal.
Another thing I think for parents—it's really difficult for parents because you want your child to feel a sense of responsibility for the child with the disability yet you also want your child to live their own life and how do you balance these and what happens when they conflict? I once was at the end of a talk in Ohio and a father in the back of the room with his three children with him—one had disabilites and the other two were typical—he said to me, "How can I make my typical kids know that their job is to take care of their brother for the rest of their lives?" He says this in front of them. How am I supposed to answer this? I said, "I'm sorry. You can't make them. They have to come to this themselves." And I'm sure he went home and cursed me out and I'm sure his kids said to each other, Hey, wow. Thank you.
So I guess my feeling about it helping each child as an individual and recognizing that a typical child is not a caretaker. They need to have enough childhood. But they're going to take some responsibilities anyway because that's just part of how the whole things works. But that if as an adult they come to it voluntarily they will do a much better job than if they're forced into it and are resentful and angry. In my family, I'm the one who came to it voluntarily. My other siblings didn't really and if I need a little help with Beth they'll be a little helpful but I'm the one doing it. But I came to it on my own through the whole Riding the Bus process.
It's hard for me to imagine Penny not living independently, but I also am aware that we are in a different category of family from most people. I don't want to have expectations for William and Marilee that they be responsible siblings and yet be kids at the same time.
I think my parents walked the line pretty well. The one thing they didn't do so well—Beth got exempted from household chores. It really did effect work ethic when we got toward employement and the whole idea that sometimes you have to do things you don't like. Recognizing that offering constantly to listen to your kids, tell their real feelings, and yet recognizing that there's going to come a point when they aren't going to be honest with you because they're going to tell you what you want to hear and then between themselves they will speak the truth.
The other component that really helps is if you foster good relationships among the typical sibs so they can communicate with each other. And you take care of yourselves. My mother totally melted down and that had severe consequences. If there was one thing my mother could have done differently it would be that she took care of herself. Beth wasn't the reason why but Beth and all the rest of us suffered the consequences. So to really make sure you're taking care of yourself and your kids are forming a sense of strength in numbers so they can turn to each other. I didn't have that, and it really was very powerful when I started meeting siblings through the sibling support project which was when Riding the Bus came out.