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Testing, Testing….

posted Tuesday August 27th, 2013

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.

Don’t I?

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.

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Tags: Filed under: Down syndrome by Amysilverman

4 Responses to “Testing, Testing….”

  1. I get it. Once words are in your head it is hard to get them out. Almost impossible, because even though you can build up a damn around them, over them, etc, they’re still there at the core. There is a lot I could say about the psychologists lack of professionalism, lack of thinking before SHE spoke- which is in fact true. There is a lot I could say about the tests themselves and how people function when taking them. I read these tests and determine disability for the government for a living. And when and if you want those words to cover up the unprofessional professional’s words I will happily provide them. Because they are equally true, and while they can’t erase what she said, they can maybe clarify or add some light to it. In the meantime, though I get it.It’s that questioning ourselves as human beings, as mothers that I think helps us to be better ones the next day and time we are called on. You’ve got that. And you’ve got Sophie. And that’s a lot. xoxoxo

  2. You write so well that I felt myself feeling your concern. No easy answers come to mind. But two thoughts did occur:

    1. Parts of the Serenity prayer. “…grant me the serenity to accept the things I cannot change, the courage to change the things I can , and the wisdom to know the difference.’

    2. There is a Buddhist teaching that goodness is good depending upon the state of mind (the intent) of the giver. It is more than the act.

    You are a good person and trying the best you can. hopefully

  3. Do get some rest. Some good rest. Every day. And also, be kinder to yourself. You are NOT a control freak. (Well, not for insisting on attending IEP meetings, anyway. Wink.) I, as a high school teacher, can’t tell you how frustrating and disheartening it is when parents do NOT attend their child’s IEP meetings. But I’m going to try. These meetings are not (or shouldn’t be) smoke and mirrors or empty rhetoric. These are children’s lives from this five minutes to that five minutes in the classroom, and a well-written and thoughtful IEP can make a huge difference in a child’s educational experience and even life (I have a special education teacher friend who is often up at 3 am writing his IEPs because he can’t sleep, either — or find time in his teaching day to write them). Of course the converse is true as well. There are parents who advocate for their children in these meetings out of love and concern and hope and partnership. And then there are parents who try to control everything — including many, many of of the wrong things — because they really aren’t sure how to love or support or hope for their children. Then there are the parents who don’t attend… Amy, hug yourself for me. This is good, important work. What an amazing role model you are for Sophie.

  4. Amy, I love your writing and your perspective, filled with insight, humor and honesty. I’ve been reading your blog for many months and am taking notes on how you navigate the world with your daughter. I can relate to your early feelings for Sophie, that loving her didn’t exactly happen the way it did with Annabelle. My lovely son is almost two and for many months after his birth diagnosis, I felt like he was an alien creature for whom I was caring until his space family picked him up. It’s all different now, of course. Anyway, keep up your amazing work, with your writing and with Sophie.

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