We had our second annual CPSE meeting a week ago last Tuesday, and it went very well over all, in the sense that we got the services we wanted and the goals sound like they're shaping up nicely. The downer was that New Issues are emerging. No big surprises -- these are things we've become increasingly concerned about over the last year or more. Still, it's a little depressing to hear the various teachers and therapists waxing poetic about it all.
The short story is that we're throwing some physical therapy into the mix, and also working to address his Extreme Shyness (a strong disinclination or inability to interact with peers). A year ago, in the comprehensive evaluations before his first CPSE meeting, he was showing a mild delay in several gross motor skill areas, and the delays have become more significant since then. For instance, he can't jump. When he's told to jump, he'll take kind've an aggressive two-step, but he doesn't get any actual air time and he can't keep his feet together. I won't go through the whole list of Things He's Supposed To Be Doing By Now But Isn't, according to the therapists, because it's dull and depressing, but we're confident that everything will be okay in the long run. It's small stuff, really, that should be amenable to PT, and hopefully we'll get ahead of it before he's in kindergarten. Also, none of it is related to his hearing loss -- Connexin-26 deafness is non-syndromic, and the only effect is the deafness itself. In fact, you gotta wonder if the physical delays really fall within or pretty close to the normal range of development, and nobody would be worrying about them if he weren't being so closely monitored because of the deafness.
I'm more worried about the Extreme Shyness. This probably is due at least in part to his deafness, or at least exacerbated by it. Now, I was Extremely Shy at that age, too, and in fact I never really outgrew it, just learned to compensate better for it. It made for a pretty rough ride in elementary school, where I was always on the social outskirts and often the target of Kids Being Kids. Not fun. I'm sure that a good portion of Ben's shyness is just innate personality, his unfortunate legacy from me. And it would be fruitless and ill-advised to try to change his personality. But there is also reason to believe that his social anxiety is intensified by the difficulty of hearing in noise and trying to focus on a single sound source when surrounded by many speakers. His teachers painted a grim picture of him being withdrawn and mute when in a group setting, refusing to answer questions even when he can hear them and knows the answer, unwilling to engage in conversation or interact with peers. From various things that his teachers and daycare providers reported over the last few months, I was starting to worry a little about high functioning autism or Asperger's, but actually there's no real reason to suspect anything like that at this point -- in less threatening environments he doesn't display any of those behaviors, and to the contrary he totally gets humor, emotion, talks with inflection, makes eye contact, shows empathy, etc. So we're all putting it down to social anxiety made worse by poor hearing in group settings, and some of his speech/language goals over the next year involve initiating and sustaining peer contact. I have no idea exactly how they're going to work on that, but it'll be interesting to find out.
It's a bit of a change from a year ago, when all the evaluators were singing his praises, he tested fantastically on everything (except the mild gross motor delays), and we had to work hard to convince the special ed director that he needed services in the first place. This year we had a new special ed director who again needed some convincing, because he still performs so highly on the sorts of speech and language skills that she usually pays attention to, but once everyone started talking about all the Emerging Issues, it was a pretty easy sell. Unfortunately.
One result of the meeting was a formal PT assessment, which took place two days ago. Once that report is written up, we'll have to reconvene the committee to discuss PT goals and services, and hopefully finalize some of the language goals as well. But we're optimistic that we're going to get a good IEP out of this.
This evening, he used the toilet All By Himself. From start to finish. I wasn't even in the room. He needed a little help at the end when he got his shorts halfway up and discovered they were on backwards, but still, you gotta be impressed. Before that, he and I were engaged in a game of "Pizzicato or Arco?", where I tell him to play his violin pizzicato and he smirks and uses his bow instead, or vice versa. And at times like those I realize, hey, the kid's all right. Relax already.
A feedback from a deperate parent
2 weeks ago