Please Stop Looking at What You See on Paper and Look at My Kid With Down Syndrome Instead


So far, I have not failed at high school.

Monday morning — the first day back after the two-week winter break — my daughter, Sophie, popped out of bed, drank her “Carnation Instant Breakfast” and chose a cute new outfit. Sophie is a freshman in high school and she has Down syndrome. So far she’s mainstreamed in all her classes. As she got ready she 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.

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 struggled with four of her academic finals.

I don’t care much about grades — not for either of my kids — but this is different. This means something is 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 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 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 place to send Sophie. But there isn’t. We’re stuck with each other, high school.

At least Sophie’s happy. Those grades 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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