A Polaroid Snapshot of My Kid with Down syndrome

Some days, with both my girls, it feels like I’m watching Polaroid film develop before my eyes.

(I’ve used this analogy before with downtown Phoenix, but I think it applies even better here, so I’ll recycle. Hey, I’m green!)

It’s amazing to see bits and pieces come into focus. Annabelle’s image is clearer, I’ll admit — partly because she’s in second grade, the first year of my own life I remember vividly, so I see the parallels and differences developing and relive certain moments through her, like last week’s Field Day, when she cried because she didn’t want to go. “Oh, Annabelle, I have to tell you that I always hated Field Day, too,” I admitted, offering an extra tight hug before sending her on her way. As with many of our not-so-shared experiences, she rose to the occasion where I never did, and had a fantastic time. The way she walks, the way she talks, dances, draws, sleeps, smooths her unruly hair, the way she started riding her bike a week ago without training wheels — it’s all developing, making her picture.

But there’s also the Down syndrome thing. Sophie’s picture is developing more slowly, no doubt about it. At the risk of sounding crass (but hey, there’s that whole Holland versus France thing that I HATE — and I’m not sure this is much worse), it’s as though Sophie’s a piece of Polaroid film that went a little wrong, chemically. Have you ever had one of those?  It comes out of the pack with the rest of that super-expensive, individually-wrapped film, and it just goes funny — the colors are off, maybe the picture’s never quite as clear as the others from the pack. But sometimes the hues are much brighter, the image different in an unexpected, beautiful way that alters your thinking.

(This is making me want to dig out the Polaroid camera and see if I can order film for it, but Sophie’s holding a toy Mickey Mouse phone to my ear, insisting that I call Mickey. So I’m a little distracted at the moment.)

Good stuff’s emerging on the piece of Polaroid film that is Sophie, for sure. The other day she wrote “Gaga” and turned to my mom and said, “G A, G A, that’s a pattern!” My mom’s been telling the story for days. Yesterday Ms. X called to report that Sophie played “go fish” with some classmates. (Won’t be long til she joins the poker game.) And there’s the reading and the talking and the way she’s right now taking pictures on my iPhone. (Only distraction that works; she’s got expensive taste. She just told me not to smile, to type — she wanted to capture me naturally, I guess. Oof, can’t wait to see that one.)

I got to thinking about this whole Polaroid thing after talking to Sally Ann yesterday. I write a lot about Dorcas the Great Physical Therapist but I don’t often mention Sally Ann, the Equally Amazing Occupational Therapist. Dorcas was at the IEP meeting last week, so I already knew she was cool with things, but I wanted Sophie’s other therapists to sign off on the report before I agreed to the terms that will govern Sophie’s public education for the next year.

Sally Ann’s really one to dot the i’s and cross the t’s, so I was concerned about her reaction. She was thrilled — surprised at how much we managed to get for Sophie. (I had a last minute burst of requests, including some actual special ed resource room time for writing instruction, which the team agreed to.) She called to talk about it yesterday, and as always happens in a conversation with Sally Ann, a very spirited, faux-proper (in a good way) Brit, we veered all over the place — discussing birthday present ideas for Sophie (maybe a Wii), her cutting skills (she can’t manage a circle yet) and particular IEP goals (Sally Ann wants Sophie to get keyboarding instruction; the rest of us are on the fence). In the course of the discussion, she mentioned something I had never heard or at least had never heard and processed. 

“People with Down syndrome have a very limited sense of touch,” Sally Ann said. “It feels to them as though they are wearing gloves all the time.”

I’ve thought about that ever since she said it, about what that means for Sophie at any given moment. It made me a little sad, but also, frankly, it’s fascinating. All part of the Polaroid picture.

I think I’ll dig for that camera. It’s old school, to be sure, and I do love the iPhone camera, but there’s something so satisfying about watching a Polaroid develop, don’t you think?



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6 responses to “A Polaroid Snapshot of My Kid with Down syndrome

  1. Re. the gloves, that is fascinating! I will add that to the whole “DS Trivia Book” that includes info about never having curly hair.

    If Sophie likes the iPhone I bet she would really be into the Polaroid. I think the film/Sophie analogy is perfect. Not crass.

    Cool about the pattern comment! And so sweet that your mom keeps telling the story.

  2. After the early childhood years, I have never had any trouble with Rick’s touch. She manages small objects (hot beeds) OK…..

    May Your “Sopie pictures” always be good ones!

  3. I like that description, it’s interesting even though I like the Holland one too! I never heard of lack of sensitivity of people with DS’s hands. I don’t think that holds for my daughter. I think in general she is more stoic. I wonder what is meant by what your provider said, Hmmm… Funny about the Mickey invitation. My daughter is always wanting to invite Franklin and Little Bear over for a playdate.

  4. TUC

    It would be cool if you took a couple polaroids of Sophie just to see a concrete rendition of your metaphor.

    The hands thing… that is interesting. My daughter (10 mo) is always reaching for my face and rubbing my skin. Now I wonder what it feels like for her.

    Beads? Thanks rickismom. I will put that on my list of future things to remember.

  5. Jen

    I just heard something like that about the hand/gloves the other day. Weird. I’ll remember that when my child refuses to use only the heels of his hands to hold his cup. (this drives me crazy for some reason. and yes, i have issues. i already know this.)

    I loved this post.

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