A slow-motion accident

I have just finished the most difficult article I’ve written. It’s about special education in Scotts Valley, funding, and the fights between parents and the district. It was a real “she said / he said” experience, with those on the administrative side saying that everything necessary gets done for the kids in special ed, and the parents on the other side saying that their kids are clearly not getting what they need.

Once again, it mostly seems to come down to money. School districts, of course, know that they are mandated to provide “appropriate” services to special ed students, so they can’t admit that they’re trying to save money or they’ll admit that they’re breaking the law. Parents know that the schools are struggling — most parents of kids in special ed have other kids, too. But they also know what their kids need, and that their kids are supposed to be served by the public schools.

I didn’t know a lot about special education before I started the article. What I knew was this: I had known several families who told me that they didn’t consider private schools for their kids because for special ed kids, all the services are in the public schools. When they said that, it struck me that this should be true for all kids: I don’t need to send my child to private school, because we have public schools that serve his/her needs. Doesn’t that sound almost incredible to any of you who know what your children really need?

The other thing I knew about special education was what I didn’t want: When our daughter first started having trouble in school, at the tender age of three, our family therapist mentioned that we could probably get free services for her through the school district. It would be very easy to get someone to give her a diagnosis and thus an IEP (Independent Educational Plan — read my story to see how important these are to special ed kids). However, she said, the problem is that once you have an IEP, you have an IEP. As Susie Christensen says in my article, how would other families feel if their kids were being raised by committee?

The therapist’s description was enough to make me realize that I would use the public school/IEP option as a last resort for our daughter, and our therapist agreed. The therapist always maintained, along with our pediatrician, our daughter’s occupational therapists, and a gifted education consultant who worked with her, that it was all developmental. Eventually she’d be able to sort things out and figure out how to get along in the world.

As predicted, we are seeing that happen. It’s a wonderful vindication of what we’ve believed all along, that our society is bent on pathologising the outer ranges of normal human behavior. Our society has come to believe that the labels are important, and we slap them on kids to pacify ourselves. Yes, I’m sure I could have had her diagnosed ADHD, early onset bi-polar, or whatever they will think of next. But as our wise pediatrician likes to say, “First, I want to assure you that this is completely normal. It’s on the far edge of normal, but it IS normal!”

Normal is a pretty big field. Somebody’s got to be at the edge of it.

But back to my article, and these kids who aren’t “normal.” As the parents say, each and every autistic kid is differently different. Each one needs a caring group of adults, including parents, to sit down and evaluate his or her needs, to figure out how to bring this autistic child into the world of functioning adults. This can be an expensive thing to do.

I have never forgotten the New Yorker article I read written by a man with Asperger’s Syndrome (a type of autism). So-called “high functioning” autistic people can go on to lead full, productive lives. They can get married and raise happy children. They can hold down jobs. Yeah, they probably won’t be talk show hosts, but boy, that saves us from yet another talk show host, doesn’t it?

I feel so lucky that I am able to homeschool my daughter, and that we’ve found a public school program that fits her (and my) needs. As I wrote earlier in the summer, she talked pretty much non-stop for a few weeks about how she wants to go to school. She sees her brother so happy in his school, and she sees that he has made some really great friends. Actually, he’s made one really great friend, the first real “bosom buddy” he’s found. What she doesn’t understand is that it’s taken him till he was ten to do that. She wants it at six.

I’m so glad she’s not in school, and she doesn’t have an IEP, and I don’t have to wrestle with all of this. As all the parents I spoke with mentioned, no one asks for a kid with special needs. You do the same thing that other people do, then you get this kid who isn’t…”normal.” But you are promised that your child will get “appropriate” services, and you know how much potential your child has. Then along comes the budget issue.

Someone asked the other day for recommendations of what to do in Santa Cruz. I had to prefix my recommendation to go to a state park with the caveat that I actually don’t know which state parks we’ll have in a month’s time. Things are in a slow, confusing meltdown here in California. A kid goes back to school to find that his beloved and trusted aide has been replaced by someone who’s cheaper. A family loads their bikes up to find that their beloved state park is shuttered. What next?

One time I had a slow motion accident. I was carrying two large bins up a set of stairs, and my foot got caught on a stair. I was moving very slowly, so I started falling very slowly. And it was the strangest feeling, like I knew what was coming but I didn’t quite believe it. I had the time to realize that I didn’t have time to drop the bins and protect my head. I felt the edge of the bin coming closer.

The interesting thing was that, perhaps because of the slow speed, I didn’t feel the injury at all. It wasn’t until my friend came in the house and saw me sitting there with blood running down my face and I saw the look register on his face that I realized that I’d been seriously injured.

Yes, the novocaine hurt, but the stitches didn’t. By then, I knew what was coming.

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