Janey's brother Freddy has been attending an after-school support group for siblings of children with special needs, run by a fellow student. I am so happy he's getting a chance to talk with other kids who truly understand what life is like for families like ours. The leader of the group asked him to write about a memory that stood out from his childhood involving Janey. He wrote about a time I remember vividly. Here's what he wrote...
Going out to public places has always been one of the most difficult things to do with my younger sister. When she was around 6 and I was 13, we went to a fast food place simply because my sister doesn't do well with long waits. My sister was just being herself, quoting the TV shows she likes, repeating nursery rhymes, and occasionally joyful outbursts. She wasn't bothering anyone, or so we thought. At the table next to us, there was a family of people from another part of the country with two children, a boy and a girl, under 10. I'll never forget the way they looked at my sister. They stared at her and exchanged whispers, as if she were some sort of alien. Instantly, I felt extreme hatred towards them. Jane is my sister, how dare they even look at her like that. Of course, they may have just never seen an autistic child before, and they were "interested" or something, but I couldn't take it. I had to get us out of there, because I couldn't take another minute of their stares. When we got into the car, my brother and mother felt the exact same way I did. We had just as much right to eat at that place as they did, and they were staring at us like our hair was on fire.
Don't get me wrong, this didn't stop us from eating out. Luckily, most people in Boston are quite tolerant of special needs children, but I have no tolerance for those who don't.
I remember so much about that awful meal. The family was talking loudly at first, before they noticed Janey, and we heard all about how they were vacationing here. Janey was being so good, I was thinking at the time. She was sitting nicely, eating, and talking away. We loved then and love now when she gets into one of her fairly rare talkative moods. As Freddy said, she was quoting all kinds of shows, singing a bit and perhaps now and then making a happy noise. The family suddenly got very quiet. They all started staring at Janey. This wasn't any subtle stare. It was an all-out stare, like, as Freddy said, they were watching an alien being. Then they started the whispering---taking a look at her, whispering to each other and then taking another long look.
What upset me most was that the adults (what looked like a mother and grandmother) were fully involved in this staring and whispering, just as much so if not more so than the kids. I remembering hoping against hope that the boys were not noticing what was going on. However, before we finished eating, they both asked to go. I was happy to. We gathered up our food and went to the car, Janey happily holding our hands. For once, I was very glad she was oblivious to all that was going on.
In the car, both boys burst out in anger. They were furious at the family. And I found myself completely unable to disagree.
What strikes me is how unusual this scene was. I've had people say something nasty to me about Janey maybe three times ever. I've had people notice her and look sad somehow. I've had people ignore her. But I don't really think I can ever, ever think of another incident of people staring and whispering. And that is good. Maybe Freddy is onto something. Maybe the greater Boston area is a good place to have a child like Janey. Bostonians are fairly tolerant. They are also generally not whisperers, I'd say! If they have something to say, they say it. Maybe this family felt it was more polite to stare and whisper than to smile at us, to let us know that they saw Janey was unusual and to talk to us about it.
I'm thinking in contrast of something that happened this weekend. Tony and I were at a Dunkin Donuts with Janey, and she ran away from us and went to a table where a man and woman were sitting. She reached for the woman's doughnut just as Tony grabbed her and stopped her. The woman gave us a big smile as Tony said he was sorry. She asked Janey her name, and Tony said Janey was autistic and wasn't much of a talker, and asked Janey to say her name, which she did. Later, when taking Janey to the bathroom, we passed them again, and they smiled and waved to Janey. That was a case where the people obviously realized Janey had special needs, but they acted in such a way that we left feeling happy and included. It takes so little to do that, and I must say, most people are great in that way.
Memory is funny. I am not sure why Freddy and I, and William too, so vividly remember that awful family. I wish memory saved instead the many, many times people have been kind to Janey, have delighted with us in her uniqueness. They are the people I want to have occupying my memory.