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So far, I have not failed at high school.

This morning — the first back after the two-week winter break — Sophie popped out of bed, drank her Carnation Instant Breakfast, and chose a cute new outfit. She refused to brush her hair, but found her ID, remembered her lunch, and cranked Stevie Wonder, then something from Glee, then the theme song to The Office in the car on the short drive to school.

“This will stay with me all day!” she announced cheerfully, pretending to play the piano along with The Office.

I, on other hand, could barely open my eyes. I piled my hair on my head and wrapped a soft red shawl around my pajamas, not bothering to change out of my slippers, looking, I’m sure, like some sort of drunk, though I swear, the strongest thing I’m drinking these days is kombucha. Up an hour before Sophie to make lunches and coffee, I was pretty much ready to go back to bed by the time we had to leave the house, and I found myself purposely missing a yellow light so I could stay in the car a little longer, prolonging the agony of the fluorescent-lit main office where I drop Sophie each morning with her aide.

“Bye Mama! Have a good day!” Sophie said, swinging on her backpack and swiping her mouth with the back of her hand in preparation for a kiss on the lips.

I slouched back to the car, where I sat for several minutes as the sun finally rose, sending emails and texts to school personnel and other parents in my ongoing, desperate attempt to stay one step ahead of Sophie.

If she’s happy, I’m happy. And so far, Sophie insists she loves high school. I’m glad one of us does and I call that success. It’s my job, I figure, to manage things behind the scenes to keep it that way. But I’m not sure how much longer I’ll be able to do it.

Let’s just say that last semester didn’t end well. Sophie failed all of her academic finals. She passed all her classes, and even did well in a couple, but those four Fs were all I saw when I looked at her report card.

I don’t care much about grades — not for either of my kids — but this is different. This is failure. This means things are not right. This is not the way I wanted Sophie’s second semester to begin.

Honestly, I’m out of ideas. Nagging obviously doesn’t work. The week before finals, I sent several emails to special ed personnel at the school, asking (begging) them to tell me how they were going to modify her finals.

Instead of responding — and working to make sure Sophie’s finals were accessible while still meeting state standards — her case manager emailed me a copy of a form he insisted needed to be signed and returned immediately. He sent a hard copy of the form home, too, very concerned that he get it right back.

I confirmed with Sophie’s lawyer that that particular form doesn’t need to returned for at least three and a half years.

And why weren’t Sophie’s finals appropriately modified? Because the paperwork calling for such a thing — her IEP (Individualized Education Plan, the legally binding document that follows her through school) —  is currently being revised, which I guess means that no one needs to bother to give my kid a fighting chance until signatures are in place.

It makes no sense. And that, my friends, is special education policy in the United States of America — and really, while I’m at it, education policy in general. There is no room for critical thinking, only space to fill in the blanks. We teach to the test, almost always with poor results, made much worse when it comes to kids who learn differently and when that kid is profoundly different but still capable of learning and growing, forget about it.

Here’s what it boils down to, here is my plea — and I bet I’m not alone:

STOP LOOKING AT PAPERWORK AND START LOOKING AT MY KID.

That’s what I’ve been asking these people to do since high school started.

They can’t. Or they won’t. Or they figure that if they ignore me long enough, I’ll go away.

Trust me, I would, if there was another fucking place to send Sophie. But there isn’t, not even in Arizona, the school choice mecca. We’re stuck with each other, high school.

At least Sophie’s happy. Those Fs aside, she appears to be learning. She’s comfortable at the school, making friends (sort of). Happy to get in the car each morning.

I haven’t failed — yet. I can’t.

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Tags: Filed under: Down syndrome, Uncategorized by Amysilverman

8 Responses to “Please, Stop Looking at Paperwork and Start Looking at My Kid”

  1. Hugs, Mama!

  2. Hallelujah! High School years were so frustrating for me. I found I gave up after working on inclusion from K-8 and was greeted at High School with “we don’t have that here”. I often had the same response when people asked how things were going “Robert’s happy. Me? – not so much”! Hang in there!

  3. I am sorry, Amy. Sophie and you deserve better treatment.

  4. You have never ever failed. You are the vigilanti fighting sweet fearsome fairy of opportunity

  5. It’s infuriating that education is viewed, in so many places, in this way. If your mug is full of vodka, it’ll work out. Hugs!

  6. You are Sophie are forces to be reckoned with. I’m sorry you have to constantly go to battle, but the fact that you do and will is going to make a difference. Not only for your family, but for others. I believe!

  7. Um…I may be wrong (but I doubt it), but an IEP remains in effect until a new one is put into place. So, if her previous (actually current) IEP had accommodations/modifications, then those should still be in place. If there were accommodations/modifications, and those were ignored because of the revision process, maybe discuss that with your lawyer, even if it’s just a head’s up that the high school is being a butt.

  8. Since Norway is all the rage, let me say UFF DA to school stonewalling and brava to your seeing right through it! (But, also know that lots of kids bomb their finals because they know they can fail this one stupid test and still pass their classes. Our district, which is not progressive at all, stopped publishing the final exam grade on report cards — finally — so maybe this can happen in Sophie’s district, too. Also, imho, a final exam should be a meaningful performance-based “test,” not a facsimile of a district, state, or high-stakes test, and if it is such a facsimile, that’s just bad pedagogy.

    As a hs teacher who’s attended many IEP meetings and read many IEPs, my understanding has always been that the last IEP (even one that comes from another school) is in effect until a new one is finalized and signed. And yes, a special ed teacher should be helping the mainstream teacher to accommodate Sophie (or modify — different things) every step of the way. You are right that too often the paperwork is the looming monster with district and state enforcers breathing down sped teachers’ necks and that kids get totally lost in that game. Sophie attends her IEP meetings, right? Keep making them SEE her! You are already going where, in my experience, no mom/kid has gone before.

    Failures feel and sometimes are so huge. Sophie put on a cute outfit and happily went forward into her high school day. THIS is a resounding success of the spirit and the will — for any high school student.

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My Heart Can't Even Believe It: A Story of Science, Love, and Down Syndrome is available from Amazon and 
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