Wednesday, June 22, 2011

IEP under development

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.


PinkLAM said...

You can add me to the Extreme Shyness club. I do think in my case it was a mix of hearing loss and my personality. In a group, I typically take on the role of "listener" much more frequently than I am the center of attention. I much prefer smaller gatherings of a couple of friends than being out at loud parties or whatnot. As I've gotten older, I force myself to go to more parties and tolerate the deafening music and crowds of extremely loud teenagers. It's not my favorite thing to do, but I guess I just try and fit in with what's socially acceptable every now and then.

In my preschool and early elementary year, I'd have one child over who seemed friendly at the meet the teacher/back to school events over to my house before the school year started, or at least in the beginning of the year. I'm pretty sure it was all initiated by my mother, but it made it a lot easier to get to know someone in a stress-free, familiar and quiet environment of my own home. Come the first few days/weeks of school, it eliminated much of the social anxiety since I already had a connection to *someone* without having to compete with 20 other screaming kids. Interestingly enough, for years I always gravitated to the loud/somewhat obnoxious kids. Their personalities were *nothing* like mine, but they often took a lot of the pressure of socializing off of me, since they were never at a loss for something to say or do. My family thinks it was because they spoke loud enough for me to hear. Whatever the reason was, they gently poked me out of my shell and definitely made pre-school-8th gradeish more bearable!

I do think Ben will be just fine, and he is leaps and bounds ahead in all the other areas! I don't have much experience with the PT stuff, although I was definitely behind in jumping, skipping, etc. For years, I also fell constantly. I never tripped or slipped or anything, I'd just being walking, lose my balance, and fall. Looking back, my mom occasionally questions why she "never got that checked out." I turned out just fine (if I do say so myself), just extremely uncoordinated. I do occasionally still randomly stumble as I'm walking, but I've learned how to catch myself :)

Best of luck! I am not too worried about Ben- he's got plenty of stuff going for him!

Melanie said...

I do think that our kids (and all kids with any kind of "special need") get picked over much more than their peers. I am always hesitant to bring up any little personality quirk that Noah has in fear that he will be labeled with something ridiculous. :) I am sure you will get it all figured out. Way to go, Mom.

leah said...

Nolan had some extreme shyness this past year, but has really been coming out of his shell over the past month or so. He still doesn't like to interact with peers his own age in a large group setting, but soccer has been fantastic for fostering some great skills (both physical and social). We have a great under-4 league that plays an awful lot of Duck Duck Goose and tag (everyone gets a ball).

John Tracy actually had a lecture on delayed physical skills for kids with hearing loss. Besides vestibular issues (a study has shown that even kids with mild hearing loss have mildly abnormal vestibular responses), our kids spend a lot of time "sitting and listening" in language therapy. It is interesting - Nolan is certainly not as active as Matthew was at the same age. I wonder if there is a preschooler gymnastics group up in your area? Might help with some of the physical and socialization skills.

To be honest, Nolan is starting to "separate" from his peers in some areas - his fine motor wasn't an issue at all a year ago, but now he's showing a "delay" there. Not sure why - whether the school system has been pushed to such a low age that delays are ascribed to kids who are just a little young for the grade, or whether there is a real issue there.

I hope the PT really gives Ben a leg up (no pun intended) and he meets those goals quickly. The social issues are the most worrisome to every mom, I think. Sending hugs your way!

krlr said...

I was just emailing someone else about "focused development" (I'm sure there's a better/technical description?). Her kid is talking up a storm, but not so much on the PT; visa versa for mine. My two cents, not that I've ever met you/Ben, but any 3 yr old who sings Paul Simon from memory & comes up with all his other Benny-isms is just putting all his energy into S&L. Easy for me to say, not being his mom, but I wouldn't worry about the PT.

Also interesting about being shy in groups - my hearing is technically fine but I loathe crowds because I can't hear anything (and, you know, there are PEOPLE around). And yes, this started waayyy early, in elementary school. Your other commenters already mentioned smaller playdates, etc. Helped me out too. No great insights but on a lighter note you won't have to worry about him hanging out too much in bars when he gets older.