If someone asked me my number one piece of advice for raising a child with autism (not that anyone has), I'd be ready for an answer---NEVER COMPARE. Never compare your child to "typical" kids, or even other kids with autism, or kids with other challenges like Down Syndrome. Just don't compare. It's a fool's game to compare.
Of course, I break that advice all the time. The worst, the very hardest thing, I've realized, is shows at school. I love the shows, I love the fact that the arts are a big part of Janey's school, but they kill me. I've tried to have a positive attitude about them, and have written here about that, but they are so hard. I am sitting there looking at a huge amount of kids Janey's age, and in my eyes anyway, every last one of them is far more advanced than she is, more with the program, happier...it's very tough. Janey is up there not doing any of the dances, or hand gestures, not singing although I know she could, starting to cry, having to be held by teachers, while it seems like every other kid is putting their all into it. The kids with Down Syndrome are amazing. I love to see their progress. The kids in wheelchairs blend right in---they are totally included. And of course everyone is doing everything they can to include Janey---but she stands apart. I am sure I notice this more than anyone else---everyone notices their own child most.
I guess things like shows are hard because a lot of the rest of the time, I play mental games with myself and simply don't allow myself to compare Janey directly to her peers. When I drop her off in the morning, I love seeing the other kids, and I don't think about how Janey doesn't do what they do. That's her school---the kids are so great to Janey that it seems like she has an important role to play. She is helping them, I like to think, as much as they are helping her. She is different, but not unequal, because everyone is being themselves. Maybe in shows, the fact everyone is supposed to be doing the same thing makes it harder.
Another hard time is the "cold" situation---when someone who doesn't know Janey starts talking to her as if she were a typical 6 year old. That doesn't happen much anymore, as now that Janey is older, I think it's more apparent to most that she isn't typical. She laughs or make noises that are more typically autistic, and more than once, when I have told someone she is autistic, they reply they could tell, that they could recognize it. That doesn't bother me at all. It means that people are more aware of autism than they used to be. It's part of my low-key mission---to tell people Janey is autistic so when they run into another child or adult with autism, they won't think "What a weird person" but might think "There's a person like Janey, with autism". But once in a while, someone will ask Janey questions you'd ask a typical kid---"How old are you?" "Where do you go to school?" "Do you have brothers or sisters?" and that is very hard. I usually jump in and answer for her---mostly because I don't want the asker to feel awkward with the silence that will ensue if I don't. But it makes me compare---those are questions that most 6 year old will answer with ease.
Another tough thing is work on the walls---the papers up on the walls that kids have done. I look at the ones from Janey's classmates last year, before she was held back, and it's like looking at a miracle. They can WRITE. They can READ. They can DRAW RECOGNIZABLE PICTURES. It's amazing. My mind plays a game, telling myself that what THEY are doing is the miracle, not the typical thing, and that somehow Janey is the norm, surrounded by geniuses. Somehow that's easier than thinking about how much Janey can't do.
So, if you can do it, my advice is not to compare. The times I can really do that, it's great. Those are the best moments---when Janey says or does something cute, when she is so overwhelmed with happiness by little things, like us playing with her jack-in-the-box or putting on the video she wanted, or taking her to the grocery store, or giving her chips and salsa, or playing catch with her, or blowing out a dandelion, or letting her pick out a shirt, or things like that. There are so many great moments with Janey that can be enjoyed best if we just think of her as Janey---not a 6 year old who can't do what 6 year olds should do, not as autistic kid, but just Janey---a special person in her own right. I'm not saying I don't want her to be called autistic. I like being able to educate people about autism. But at home, for just us, when we can just enjoy Janey as a family member, a beautiful, funny, interesting little girl who exists on her own, not as an example of anything, well, that's the best.