Who is Jake?

And why has it taken me so long to start a blog about him?

He's my son. He's nine years old. He has big brown eyes, delicate features, and a lithe, muscular frame. He has autism, and he also has cystic fibrosis and a rare genetic disorder called alpha-1-antitrypsin deficiency.

He loves being outside, picking and twirling grass, straw or my flowers in his fingers. He loves snuggling, eating pizza for breakfast, and songs. We call him Primal Boy because he lives mostly on chicken, bananas, and fresh air, and far prefers nakedness to wearing clothes.

He was diagnosed with autism on his fourth birthday, in 2004, but in reality he should have been diagnosed long before that. Back then in the Dark Ages, a kid like Jake, who was smiley and happy to see people, who had some imaginative play, but who was severely behind in language development, got tagged with "severe speech delay" only. We were told he was too social, too happy, too content to have autism.

Somewhere between age two and a half and three, we started to realize that he wasn't going to grow out of the toddler oddities that accompanied his speech delay. As he edged past three, his development seemed to be going backwards, not forwards. I was still chasing him down at my husband's baseball games, trying to keep him off the field. Library storytime was impossible - he would not sit. He began flapping his hands and vocalizing loudly whenever he was excited. People began to ask us if he had autism.

It took a while to get in with a specialist who could diagnose him, but since we were sure we began the ball rolling for school services while awaiting a diagnosis. In these cases it helps to know a psychologist who can confirm the diagnosis quickly. That piece of paper moves mountains. We were lucky in that regard, or he would have been close to five before he received services of any sort.

Despite beginning full-time in a special charter school for children with autism in Florida, Jake's progress that first year was slow. We moved to Vermont and he began kindergarten in a full inclusion setting. It's been a bumpy road, trying to get an appropriate program that allows him to be with his peers, yet gives him the intensity that he needs. Finally, this year - fourth grade, nine years old - we have a new program. And so far Jacob seems to be soaring.

The new program is groundbreaking, in that it isn't "resource room" or the "autistic unit" as they so respectfully called it in Florida. It's self-contained, but after half a day there, Jacob joins his regular class at his home school. He joins them for lunch and recess. With support, he is able to be in the classroom with them for over an hour, then go to his special with them: library, art, music, or PE.

The intensity is what we've been searching for since his diagnosis. And he can receive one-on-one intervention, yet still have many opportunities for social development. It's a nice balance between being with other people with autism and being with people who don't have autism. As he gets older, I become more conscious of how hard it must be for him to be the only kid with significant autism in his regular class. It seems important that he have a chance to connect with other kids with autism, to learn about himself, to feel less alone.

A note about the title of this blog: I'm assuming you get the Joyce reference. But "autist" as a term isn't something that you hear often. It's used primarily in England and Australia. The PC way to talk about someone with autism is to say that: "Jake is a child with autism." It's assumed that saying, "Jake is autistic," means that autism defines him, proscribes who he is, like saying "Jake is epileptic," rather than "Jake has epilepsy." But I don't see it quite the same way.

There is also the pro-autistics movement, a group of adults on the autism spectrum who use the term "autistics" to describe themselves, who identify positively with autism. I like them, because they see autism as a neurological difference that isn't something to be "cured" anymore than being a writer or being gay should be "cured." I don't seek to cure Jake, although there were times, soon after diagnosis, when I thought that was a worthwhile goal. That doesn't mean I don't want him to learn to live in the neurotypical world more easily. I do. I want him to learn to relate to other people, to grow socially and emotionally, to learn language, to be happy. But I want to make sure that whatever education or therapy we do is respectful of him as a person, always.

I use "autistic" and "has autism" interchangeably. When I say "he has autism" I don't mean it like a disease. I don't see it as a scourge, something to be scrubbed from him, eradicated or minimized. When I say "he's autistic" I don't mean that's all he is. And autist just fit somewhere in between.

Wrestling with these issues, and not wanting to speak for my son, who can't yet speak for himself, is why it's taken me so long to start this blog. Finally, as I settle into role as mother of an autist, as he loses his top front baby teeth, as he learns to read, as he begins to string sentences together - here I am. Writing about him.