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This Is Not A Test

posted Wednesday October 24th, 2018




This morning, Sophie’s high school classmates are taking the PSAT. Sophie is home, sleeping in.

When she gets up, she’ll do math homework, get her bangs trimmed, watch some YouTube videos. Later in the day, she’ll go to ballet class.

I’ve never let her miss a test before. For 15 years, this kid has been expected — pretty much — to do what her peers do. Until today.

It’s particularly weird, letting Sophie skip, considering that her older sister Annabelle is currently steeped in tests, essays, portfolios and everything else related to a four-year college experience.

Sophie will continue her studies after high school, but she will not be pursuing a four-year college experience. She has already announced that she’ll be attending community college. I love this idea. All over the country, university programs are popping up that are specifically designed for students with intellectual disabilities — except at the nation’s largest university, Arizona State, the one that happens to be located two blocks from my house. That’s okay. From what I’ve heard, some of these programs are very good and others are feel-good money sucks.

We’ll stick with community college for Sophie. There’s no need to take the PSAT or the SAT. And so when she asked to skip today’s test, I hemmed and hawed (and consulted with her lawyer, my mom, the special ed director at the school and several other parents of kids with Down syndrome) and ultimately let her stay home.

The truth is that standardized tests have never really been my thing.

“You could let her go and take it and fill the bubbles out so they make daisy shapes like you used to do,” my mom said. Point taken.

So Sophie stayed home. She rubbed her sister’s nose in it last night, and I’m sure Annabelle was a little bummed to be the only kid getting up so early this morning, but the truth is that Sophie’s the one getting the bum rap. The world wasn’t designed for the Sophies. She’ll find her way, but it won’t be easy. And we might as well start preparing now for the off-trail path.

In tiny ways, I can feel Sophie getting ready for her life. The other night, she went to her school’s homecoming dance with Annabelle and one of their best friends. Sophie planned for weeks, purchasing multiple dresses, planning the evening down to the minute, alternately vamping and nagging throughout the afternoon of the dance till I couldn’t take it anymore.

She asked that our friend Rachel curl her hair, and had Annabelle apply her eyeliner. When she was all ready she looked in the mirror and sighed happily, then said something that surprised me.

“I look like Christina!”

“Who?” Rachel asked, but I knew immediately. Sophie was talking about “Born This Way,” a reality show that follows the lives of several adults with Down syndrome, including Christina, who got married on a recent episode.

I was surprised, because Sophie doesn’t tend to identify with other people with Down syndrome. I was thrilled, too. Every day, Sophie gets older and every day she drifts a little more from her typical peers. She will not grow past 4’5″ and in many non-concrete ways she isn’t keeping up, either.

And yet Sophie is so wise, kind, funny, insightful — all the things I see in Annabelle, the things I always hoped for my daughters to be. Like Annabelle, Sophie is also unique. But she does share this genetic situation with a tribe she (mostly) hasn’t met and I looked in the mirror that night and saw what she was talking about, the same small stature, the almond-shaped eyes, the straight hair. Very different from Christina, and also so similar.

That will be Sophie’s lot in life. Not her whole lot, to be sure, but part of it, and I see her embracing it in small but meaningful ways. I want her to be okay with it — the way I want Annabelle to be okay with the colleges that accept her and the ones that don’t and with a million other things that will come at her.

I wonder if Sophie knows what skipping the PSAT means, aside from a day off school. I think she probably does. I’m not going to ask.


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5 Responses to “This Is Not A Test”

  1. My daughter is 33 and this post brings back so many memories. Sophie is growing up, just like we all do, but on a different path. Not the wrong path, not even a bad path, just different. And I expect she’s going to have a wonderful life!

  2. I hope you don’t mind me asking, but how was that experience for you as Sophie’s mother? I often think of the stages of grief that come with having a loved one (in my case, a brother, 30- I am 28) with an intellectual disability.

    I find that, for myself, I am by and large in complete and total acceptance. And yet there are still those natural moments of regression where it hurts- and I’m ok with that, because I’m able to recognize that much of it is my grief, and not his. AND that he has a very wonderful life, in many cases a better life than many neurotypical people I know.

    In other instances (areas where he knows he’s not having a “typical” experience) this is much more difficult to accept. I have to continually remind myself that he’s allowed to have the normal human experience of sadness/anger/grief without my having to save him from it, but sheesh, it’s hard.

  3. All the PSAT does is cherry pick National Merit scholars, a very small percentage of teenaged human beings who also happen to be test taking machines (and some of them, in my teaching experience, also very intelligent, intuitive, and kind humans, but not all, not even most).

    I teach 100 percent marginalized kids, “disabled” in many other ways, if not genetically. None of them took the PSAT either, even the really bright ones who would have done well, because they had no idea what it was when it was announced and that it is something they could/should sign up for. And maybe because they didn’t have the $16.

    The industrial education complex is rigged. We all know that.

    I have often felt sorry for myself for missing out on a fancy liberal arts college experience. I’ve envied others. I went to community college — twice. I had a beautiful experience (twice) and some of the best teachers I ever met. I had a tribe there. Sophie will, too.

    College Board be damned.

  4. The ongoing story you share is poignant and meaningful. The journey of being a parent is filled with both challenges and joys. Thank you for sharing your story. And Sophie’s story. Well done!

  5. Love all your posts Amy and lovvvve above comments. My son with ds is 37 and I RELATE(wish I could put that in bold). Transitional years were tough for us (me) <3

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