posted May 18, 2009 at 1:25pm
I think I am being tested.
The meeting last week with Sophie’s team went well, I guess. I shouldn’t say that — it definitely went well, in the way that those meetings often do. Everyone goes around the table and talks about how wonderful Sophie is, lists ways to make her even better, and I leave on a cloud — puffed up with expectations and compliments and attention.
This time I left feeling a little deflated, despite the platitudes and promises. The principal said all the right things — he took responsibility for Sophie’s aide being away from her for a week (at least a week, I didn’t poke for details) and held out a hand-written schedule; they’d worked up exactly what the aide would do with Sophie all day, every school day, to meet the exact amount of time mandated by her IEP and, therefore, by law.
“We’re 15 minutes short on Fridays,” the principal admitted, cringing, everyone around the table watching me for a reaction. I brushed it off, feeling a little embarrassed, muttering something under my breath about how it was okay.
“We want to earn your trust back,” the principal said, and I smiled and brushed that off, too. I hugged him after the meeting — I think he’s great. So is Sophie’s fifth grade teacher, the resource teacher, her therapists, the amazing aide.
I left the building with a thought — a thought I’ve had for the last week (and to varying extents for the last 10 years) — that I’m the one who’s not that great.
The truth is that even though I make requests and suggestions during these meetings, I really don’t know what to ask for, when it comes to Sophie. I don’t know what to expect from her or what to expect from the people around her. More and more, I can’t fake that. And it’s getting more important every day.
“This is the make it or break it year,” Sophie’s long-time physical therapist cautioned me, the day before the meeting, ticking off the things that Sophie needs to be able to do, but can’t do. I walked around for the next day with my stomach in knots.
I don’t know how to ensure that Sophie makes it, whatever that means.
I do know how to love her. Funny, if you’d asked me a decade ago, I would have told you that I’d be a pro at advocating for my child, for making sure she got the right schooling and all that. But if I was being honest, I would have hesitated on the love part.
Turns out, that’s not the case. I breath her in, soak her in, in a way I never have with any other human being. I think it’s because she’s so amazingly open to it, open to me. I’ve had insomnia the last few nights; the only time I can sleep is with Sophie slumped on me — early in the evening on the couch when we both shut our eyes, lulled to sleep by the Disney channel.
Sophie is obsessed with my C-section scar. I showed her once, and she asks all the time to see it again.
“Why do you want to see it again?” I ask, a little annoyed.
“I just want to see where I came out of.”
(Thank goodness I had a C-section.)
It’s a mindless act, loving Sophie, and for someone who thinks too much, it’s a gigantic relief for me. And by mindless I don’t mean to belittle that love; in many ways it was harder fought and won — and kept — than what I instinctively felt (and feel) for Annabelle from the moment she was born.
So imagine that you love this child a lot. And she’s getting older, but unlike her sister, still needs so much. Needs just the right advocate. And not a lawyer or someone from an agency, although that can help sometimes. Not a therapist or a well-educated friend or any sort of professional. No, she needs me. And her dad, too, of course, and he’s awesome, but I’m the control freak who insists on going to the meetings.
At the end of last week’s meeting, the principal looked down at a pile of papers and announced that Sophie is due to for her three-year reassessment in January. It was my turn to cringe. The last time she was tested, the school psychologist and I got into it at that very table, in that same conference room, and when I challenged some numbers she threw up her ands and announced, “Sophie has the cognitive abilities of a 3 year old.”
Sophie was 7 then. I can’t hear that again — not about my 10 year old — I told the group. Everyone (even the adaptive PE teacher who keeps insisting Sophie will someday live on her own and have a real job) looked at their laps.
It’s just numbers, just tests, someone said quietly. It doesn’t define Sophie.
“It didn’t til that woman said it,” I said, struggling to explain. “It’s like someone threw this big `cognitive-abilities-of-a-3-year-old” sheet over Sophie’s head. It defines her now. I think about it almost every day.”
More lap-gazing. The resource teacher said something about choosing the tests Sophies takes, and I know it will be a better experience next time; that psychologist no longer works at the school. Anyhow, I don’t have a choice. If I want Sophie to be taken seriously in junior high, I have to let them retest her, with the hope she’ll do better.
I’m being tested, and there are no right or wrong answers and no retakes. It’s exhausting. I think I’ll go home and crawl into bed next to Sophie and try to get some rest.