Monday, May 18, 2009

When My Heart Is Coming Out

N's OT-based social-skills classes have been renewed for another six months. Despite my fears that this would be a fight, it was actually a complete non-event. I'd like to think it was based on the fact that it's obvious to everyone that this is good for him. but it may also be based on the fact that I passive-aggressively sent my request for a June reassessment meeting to the head of special ed for the district, noting that I couldn't find the email address for our case worker (or whatever he's called) on the district website. (Which I couldn't...but all I had to do was email our speech therapist, and she'd have sent it to me.) And maybe that email had some very carefully worded sentences that made it clear that it would be in everyone's best interests to just give me what I wanted so I'd not take up scads of their time trying to press my case at such a busy point in the year.

A victory. There have been a lot of them, lately. (Dinorama, anyone?) But then there are the side-steps, and the step-backs, and the I-have-no-idea-what-to-call-thems.

While the kids were in religious school on Sunday, I went for a walk with a friend, and she was rhapsodizing about how far N's come in the last few months. But then there was a field trip to a local kosher frozen yogurt shop after school was over (an annual treat for the kids...and yes, our religious school is small enough to fit in a yogurt shop, with room left over for other patrons to move around), and it was just too much chaos for N. Suddenly, he was refusing to talk to his friend from his class, who was trying everything he could think of to engage N. N, trying to get away, crawled under my friend's chair. This is not, to put it mildly, typical eight-year-old behavior.

"I think we need to consider these advances of his on a sliding scale," I noted dryly, as he squeaked and barked and refused to use any kind of intelligible language.

And yet...about ten minutes later, when the other kids had moved away and left him to his own devices, he came out from under the chair and asked me if he could "run a little bit outside." I told him he could run back and forth in front of the shop, which he did, the other kids watching him a bit bemusedly. Still, it was exactly what he needed to regulate himself, because when he came back inside, he was a changed boy. Walked right over to his friend and started a conversation, asked him if he wanted to go outside and sit with the big kids. As if he hadn't just acted like a feral kitten for 15 minutes.

There are other things, too. I get notes from the OTs each week, and they make a point of noting that often N needs special accommodations in order to participate in certain activities, things that are too 'scary' for him, like the indoor, low-to-the-ground, zip line. What does it mean for your chances on the playground when the demands of occupational therapy are too much for you? And these notes also say things like, "N was able to elaborate on topics today, yet was perseverative at times." What does it mean for your ability to keep up socially when you're the one who's noticeably perseverative in a room full of kids with autism diagnoses? These things, they worry me.

Also, his language is still awkward at times. Just seconds ago, I heard him tell his dad, "Pick up me." When he dropped something earlier and was whining that he couldn't clean it up by himself, he told me, "I need help by you." Again, he's eight. He's been eight since January. But, on the plus side, we're closer and closer to getting what he means, more and more of the time. And his linguistic quirkiness isn't always such a bad thing. Sometimes, it seems like a gift. Sometimes, the best times, it is pure poetry. Again, from his OT session notes: "When defining love, N reported that it's 'when my heart is coming out.'"

I may worry and fret over him, and maybe at times I seem overly negative and focused on the deficits, but that's here, when I'm writing, when I'm thinking, when I'm...yes...perseverating. But mostly, when I'm with him, my heart, too, is coming out. All the way out.


Niksmom said...

What a lovely, lovely post. It really resonates wtih me right now. :-)

kristenspina said...

Beautiful. But so complex.

po said...

It's soo not linear, this journey. So many advances, that deserve to be celebrated, so many steps back (and sideways and diagonally). It was so hard, trying to not feel like my heart was broken every time something bad happened again, when *they'd been going so well*. It's still hard. It'll probably always be hard.

But N came back from his episode under the chair, and THAT is a true cause for celebration. The final outcome is what counts.

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