posted Wednesday January 6th, 2010


Lately, I’ve noticed that I haven’t been writing so much about Sophie and Down syndrome, per se. Maybe it was the distractions of the holiday season, but I think it’s more than that.

Funny, when she was born, the doctors and other experts warned us that as she grew, we’d see her differences more. Instead, more and more (for me at least), Sophie is simply Sophie, rather than Sophie-with-Down-syndrome.

I notice increasingly that I don’t notice it — I don’t compare her (as much, at least!) to kids her own age. She’s emerged as her own little person, good at some things, not as good at others. Sometimes a pain in the butt, but more often a source of indescribable (is that a word?) joy.

I don’t notice people staring in public as much as I used to — though they probably still do. I’m comfortable in my skin, being the parent of a kid with special needs.

At least, I think that til something blindsides me. I didn’t want to write about this, but I’m forcing myself, for honesty’s sake. I owe it to this blog, if nothing else.

Late last night I was rooting around in Sophie’s backpack, and happened upon a somewhat crumpled worksheet. It was a very simple sheet — hopefully you can read the wording on the photo above — asking the student to draw a picture of herself and write a short story about “Me”.

Check Sophie’s out.

OK, I’ll say it: Her finished product is underwhelming.

At first I was angry, thinking, “Wow, didn’t anyone sit down and work with her on that?” — which quickly changed to, “Hey, Amy, what happened to being more concerned that the special ed teacher does too much of Sophie’s work for her?” which then morphed into, “Oh no, what if the special ed teacher was helping her and this is all she came up with?”

In any case, I was bummed. I admit it. After dinner last night, Sophie read me the book in her homework folder, and I was impressed with how well she did with long(ish) sentences, in a sing-songy picture book about a Grizzly bear sitting in a chair, watching circus animals pass by.

But later, after I found that “Me” worksheet, I remembered that at the same point in first grade, Annabelle was easily reading the chapter book “How to Eat Fried Worms” for her nightly homework. (Yeah — I thought it was a little too sophisticated for a 6-year-old, too; Annabelle’s first grade teacher had recently switched from teaching third.)

I know I know I know I know. Sophie is who she is, and she’s a remarkable little girl. I wouldn’t trade her in, that’s for sure. It’s probably good that I dug that wake up call out of her backpack. Time for a conference with the teacher, if nothing else.

Someday I’ll find that happy medium between Just Sophie and Special Needs Sophie. I can see it on the horizon; I just can’t reach it quite yet.

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Tags: Filed under: Down syndrome, first grade by Amysilverman

5 Responses to “******ME******”

  1. You’re right on target. Just 3 more decades to arrive where Ryan & I are.

    We guys have a supper plan tomorrow night ( in minus10 degree wind chill weather). We’ll rip some more Praise & Worship CDs (Xmas presents; Glory be!) to his iPod.

    And, hey, wow, for Sophie’s iPod Touch. A superb developmental tool. App city, here we come. I am considering getting him one of those.

  2. It’s a roller coaster isn’t it? I actually like that picture -which one is her- it’s the psych in me but I hope she’s the large person with the smile!

  3. I think we all ride on these continuums, even with ourselves, all throughout our lives. And horizons are always out there informing us and guiding us, not quite reachable…thankfully. It’s late, I sincerely am trying to make sense. xoxo

  4. PS. You make me think.

  5. Oh, Amy. It’s the good old ebb and flow. Good days and bad. It’s so much more fun to celebrate the accomplishments than to hear the bad news or see the “underwhelming” finished product. I am so there with you, on all of it.

    What strikes me here is how different our kids’ (not just talking here about Sophie and Leo but the general DS kid, shoot, all kids, but specifically kids with DS) abilities are. It seems like they tend to have strengths in one (or a few) areas with these gaping holes in others. I know, not exactly a lightening bolt of info but something to keep in mind. Aren’t Sophie’s verbal skills amazing? And she’s doing great reading so that is something to celebrate too. And her creativity and imagination and sense of humor…and this is all just what I garner from your blog, so I can only imagine what she’s like in real life!

    Finally, this post reminds me of one of my favorite passages from a book I recently read, it’s a belief I hold close, at times such as the one you describe. It’s from Vicki Forman’s “This Lovely Life” (about raising a medically fragile, disabled child). Our journeys differ from hers, but the sentiment is the same:

    “It’s so difficult to love another person and yourself for what they are and not what they do or who they could be. To stay in this moment and know it in all its pleasure and its pain. The world is a beautiful place. How often do we say this aloud?”

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