Alia (around age 11, Sarah and Jessica (age 8) (Jessica is wearing the Little Mermaid shirt)
When the kids were little, we’d get questions about what was wrong with Jessica from Sarah and Alia’s friends. Maybe a lot of them didn’t have interactions with a mentally handicapped kid. At first glance, Jessica didn’t appear to have anything wrong with her. In fact,she was really cute. So were the other two. But whenever Jessica spoke, it was clear something was different.
So “what’s wrong with Jessica?” was a question my other two had to explain. It probably made them uneasy having to offer explanations and must have made them feel terribly uncomfortable. I would have felt that way. Maybe I should have taught them some snappy comeback, but I was also so unsure. The blind psychologist I was seeing told me they should answer “Jessica has a broken brain.” Easy explantation? It sounded that way. I have no idea how that may have sounded, but the blind doctor – whose name I won’t say – gave this advice. She said I should treat Jessica the same way I treated the other two girls – have her participate in the same things -not to restrict her.
I didn’t do it that way. Not because I didn’t want to. It was because it wasn’t what Jessica wanted. Jessica didn’t ask to go with Sarah to her friend’s house or ask to join Brownies or go to Tae Kwon Do. If she wanted it, I would have taken her. I would have insisted on mainstreaming but she appeared to want to be with individuals who were just like her. I got in an argument with a professor at UM about mainstreaming. She had a disabled daughter and was a big proponent of mainstreaming. But each child is a special case, and wants different things – don’t they? I always honored that.
So it ‘s hard knowing if what I did or how I parented was the right way to do it. I wasn’t the one who grew up with a handicapped sister. And as for Sarah, Jessica was her twin. In my book, I have a chapter or two where I explore this and how it felt. We had to manage, we had to continue living our lives an doing the ususal stuff. But I am left a bit wistful, wishing it could’ve been easier for the other two.