long days

A few days ago I visited the preschool for autistic kids offered by the city we live in. It seemed like a great program, with tons of staff, and on site speech and occupational therapists, ABA next door, and a social skills group in the morning before school. The director told me that most of the kids come from 8:30-3:30, with 2-5 hours of behavior intervention therapy daily after preschool. At the very least, it sure would cut down on driving from appointment to appointment.

I had to walk away at one point during the tour and pretend to study the daily schedule, so I could stop crying and pull myself together.

Even though the program takes only "higher functioning" kids, it was so depressing. Each kid was a little planet unto himself (mostly himself, a few herselfs.) You know how when you walk into a preschool, all you hear is noise -- talking, laughing, crying, yelling. Not here. It was eerily quiet. Some kids were talking, but many were not. And the kids who were talking, were only talking to adults -- there was no chatter or conversation amongst the kids. None. Not one word.

I don't think we can send L. there, even if it's the best option in terms of treatment. I could never leave her there without crying. I know it's not as sad as I think it is -- those kids will all go to regular kindergarten, some with aides and some without. These are not the kids to be crying about. I know that.

Maybe what was so upsetting was to realize that L. has more in common with these kids than she has differences. And it was also realizing what the world would be like if all kids were like her, and that was sad too. So I'm going to cling to the idea that what she needs most are normal kids to copy and learn from, until someone proves to me otherwise.

The same night, before bed, I watched Toni Braxton on The View on the DVR, talking about her son with autism. We couldn't watch much of it -- it was extremely depressing, and also weird to watch different families talking about their kids' disabilities with the children sitting right next to them on stage. They talked about different therapies, and the warning signs.

I had a hard time falling asleep, thinking about those warning signs. I can't let myself think about that list, without getting unproductively angry. She had some of those warning signs, at as early as 15 months, and nobody, including me, did anything about it.

From the time she was walking, I was expressing my concern to her pediatrician about her toe-walking. Everyone oohs and ahs about how cute she is walking on her tip-toes, but it's less cute when you realize it's a physical symptom that is often a marker for autism. I took her into the doctor at 24 months because she had her fingers in her ears whenever there was a loud noise or she was scared. That should have been enough to at least ask some questions about her social development. Did she ever line up her toys? Why yes, yes she does. Is she anxious in social settings? Most of the time, yes. Just a few questions, and we could have gotten her in to see a specialist by the time she was two years old. So much time wasted.

But it's also a waste of time getting worked up because the doctor didn't pick up any of the admittedly very subtle warning signs. I could jump on the anti-vaccine mercury poisoning bandwagon, or one of the other theories du jour, but the truth is that at this point there's really no one to blame. Other than myself, for not listening to the nagging voice inside my head telling me that she was different from other kids.

In the meantime, she won't be going to the autism school. They may have the best therapists all in the same room, but how is she ever going to learn how to converse and play and collaborate and work together with other kids -- if she's going to a school where nobody talks?