The school fandango

Toward the end of last year, all of the parents of kids in the autism program in town were invited to an evening meeting, where we all met the new director of student services. More importantly, we all met each other for the first time. It was a weird feeling, for me, because I had wanted to meet these parents for a while, hoping that the school would facilitate it, but it took ages to finally get to that point.

My son came into the program four years ago. He was alone in it, I think, for the entire first year. Then, he was joined by N & J, a boy and girl, respectively, who were a lot more mildly on the spectrum. N is now in the first grade room exclusively, and has always been verbal. He’s a really sweet kid with a cute grin.  J is a pixie of a little girl, also verbal, and is now in the kindergarten room, mostly. For almost a year after, it was the three of them. Then came K, a powerhouse little girl, who would often be found under her table, yelling at her para. She LOVES my son. My son knows, and is fond of her, but a little wary of how energetic she is, I think.

Last year was the boom, though. We got S, a boy, R, another boy, and then another boy whose name eludes me. You can see the stats almost screaming at you.

Anyway, I sat there with my husband, looking at all these parents. I had had the distinct feeling that we’d been deliberately NOT introduced before. It’s a long story, but the SpEd teacher who’d been in place when we first came into the program had been apparently working hard at not really working her job. I don’t want to divulge how I came to find out these things, but suffice to say that I was dismayed to discover that she (an autism parent herself!) had been playing games with us, the parents. I was grateful for some of the little things she’d done, but in the big picture realm, she’d bailed on helping in the big ways. And then she left the school on the hook by letting them know that she’d taken another job, the week before school started. Last year was filled in by a teacher from Hartford, a true crackpot if I ever met one (she wore shoes with springs…every day). That one was out of her depth, and the program was spinning out of control. I walked in to the room one day and it was, to use the term carefully, bedlam. I was genuinely upset and worried at that point, and made no bones about telling this to this new director of student services later, in a one on one meeting.

As I say, though, it seemed that the parents had been kept apart, perhaps to keep us from comparing notes and raising the alarm earlier. And then the new guy started talking, and we were all aware of a palpable sense of relief. He came to our town from the Pacific Northwest, and has been working with autistic preschoolers since the early 1980’s. In fact, I was astounded at this hiring coup by our town. Gobsmacked. He began by telling us that he envisioned the program expanding to involve community support, volunteer respite care, parent training…nothing short of miraculous to those of us who had, perhaps, lost faith in our school a little. Another mother and I were getting teary just listening. It was like someone had heard that we were lost, out in the dark, and came to find us with a lantern and St. Bernard.

I do really love our town, which we moved to and adopted as our own. We put up with having a Nascar minor circuit track 1/4 mile away (LOUD!!!!), as well as a house that we bought on a whim of helping family out. Now we’re alone in a duplex, when we’d really just like a farm. But we’ve, I think, decided to deal with the not so great aspects of life here, primarily because of the autism program. We know how lucky we are with it. I did not have to fight to get him in it. All I did was walk in, say, “We have his diagnosis from UConn Developmental Psychology,” and they took the lead and ran with it.

We just have a sense of urgency that has not really been shared by everyone. The paras have worked themselves to death these past years to compensate, for instance, for the shortfalls of the SpEd teachers. However, it suddenly became school policy that the paras were not allowed to talk to parents outside of school. I feel that this is a load of crap, personally. They spend the most time with our kids. I’m not going to ask them to step over any ethical lines in how I talk to them, but I’d like to know who these people are.

But, since we have this magic man now, I am going to flog to death the topic of Open Communication. Transparency. As in, don’t B.S. the parents!!! Our Dr. D says he wants our town to be a model program, one that other towns will want to come and observe. I want to believe him, really I do.

We had our first parent meeting of the year (after I met with the new SpEd teacher for two hours) last week. We finally had a moment when the parents were talking to each other, and discovered that we all kind of feel the same way about the vaccine question, amongst other things. We all joined the “Jenny McCarthy needs to shut up” club together that night. One of the moms said she joins every online forum and community, because “why not?” I think she’s braver than I, not to mention has a tougher hide than I do, probably. I have stayed out of a lot of online chatting, simply because my blood pressure really can’t take it. Another reality for our family is that I have not found too many people who share the particulars of our situation.

I know that sounds weird, but all the books I read, all the postings I have read…I don’t feel like I’m reading about my son. His behavioral issues faded pretty rapidly once he got into all-day school. He’s happy 90% of the time, even when we don’t know what he’s happy about, necessarily. He goes to bed at night, between 7:30 and 8:00, and doesn’t wake up again until 6a.m. We travel with him, and he rolls with the punches. It’s hard for me to explain this to other parents who haven’t slept a whole night since their kid was born, nor gone on a vacation. I’ve tried…but it seems to get dismissed. I think some folks secretly have thought that my son isn’t autistic, or something. But, since I know what we did to get him to where he is, I will share that in a later blog.

School is such a strange dance for us, though. I’m only just now feeling like there is no hidden agenda, no subtext to what’s being said. I’d be interested in hearing from other parents about their experiences with schools; what size town, what size school, what level of effort, what kind of budget, that sort of thing. I’d also like to hear about what parents have done to involve the school in understanding their child. Right now, we’re mulling over, at my suggestion, having an autism “symposium”. I’d like to see the whole town invited. We’d like to talk about autism, about what it’s like to have your family dynamic shaped by it, and that no, your kid is not going to “catch” autism, or become autistic.