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Wax Museum

posted Tuesday April 29th, 2014

The other day Sophie, Ray and I went for a walk. Sophie walked between us, and one point reached out and grabbed each of our hands.

“Will we go for walks like this our whole lives?” I asked, saying it as much to myself as to Sophie.

“No,” she said matter-of-factly. “I’ll go for walks with my husband and our kids and our dogs.”

“Sounds good to me,” I said, smiling over her head at Ray. Hey, it could happen. “So who will you marry, Sophie?”

“Niall from One Direction,” she said a little impatiently. (We’ve been over this before.)

“So you don’t want to marry someone with Down syndrome?”

“Yes, if Niall from One Direction has Down syndrome.”

Got it. Sophie’s hot and cold on the DS thing. Sometimes she’ll see a person at the mall she thinks has it (this becomes awkward when the person does not) and want to approach them to ask. She has a couple girl crushes at Special Olympics. And she adored the leads in Detour Theater Company’s production of “Hairspray” a few months ago. (Detour is our local theater company for adults with developmental disabilities.)

Still, I was surprised when she announced who she wanted to be for the fifth grade wax museum. Every year, each fifth grader at Sophie’s school chooses a character to portray. I believe it’s supposed to be a historical figure, but apparently it’s good enough if it’s a real person, because Sophie came home yesterday ready to research Lauren Potter.

I didn’t recognize the name right away either. Lauren Potter plays Becky, the character on the popular (and somewhat inappropriate) television show Glee.

“Why do you want to be her?” I asked Sophie.

“Because she’s Down syndrome and she’s a cheerleader!”

Has Down syndrome,” I said under my breath.

I asked about two of Sophie’s best girlfriends. One is going to be Anne Frank; the other, Justin Bieber.

Did you know that there’s a special Wikipedia-like Glee web site? There is. I now know that Lauren Potter’s favorite color is red and her favorite book is Twilight.

“She wears glasses like me and likes spicy food — just like Daddy!” Sophie announced this morning, carefully going through the several-page entry.

I bought the costume on eBay; later we’ll get a presentation board and put together details of Potter’s life. Much of her resume details her advocacy work. I bet she’d be pleased that Sophie wants to portray her. Or would she be?

“Look!” Sophie said, pointing to Lauren Potter’s photo. “We look alike!”

Yes — and no. For so long, I’ve wanted to Sophie to be comfortable having Down syndrome, to relate to others with it. Now she shows a sign that she is, and it makes me feel uneasy, like she’s settling, ready to be typecast. Why can’t she dream about marrying Niall? When I was her age, I wanted to marry Shaun Cassidy (okay, I might have been a little younger) and I didn’t have to worry about his genetic make-up.

As usual, I need to get over myself.

Unlike a museum, our world is full of moving parts. A work in progress. Nothing is set in stone — or wax.

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Tags: Filed under: Down syndrome by Amysilverman

4 Responses to “Wax Museum”

  1. Realism is difficult but keeps us grounded.

  2. Hi Amy,
    It’s difficult for me to type through my tears…you see, I’m Lauren Potter’s very proud Mom! I always say, “who would have thunk it?”, that Lauren is where she is and doing what she is doing, but reading your beautiful daughter’s thoughts just blows me away! I can’t wait to show this to Lauren…she will be SO pleased:) If there is anything we can do or send you to help with her project, let me know!
    And, just so you know, Lauren always dreams of marrying Zac Effron…or who ever is the latest heart-throb:) Believe me, you are right that “nothing is set in stone”!

  3. There is something about the wax museum assignment that brings back interesting memories. That was the first thing Brennan did when he returned to 4th grade after his first brain surgery to remove the tumor he’d been hiding. It was a great way for him to go back slowly.

    Brennan was John Lennon (but one of my favorites was a “famous” bird watcher portrayed by one of those kids that knew shit that most kids don’t know). I was worried that Brennan wouldn’t be able to memorize his lines and asked if he could use note cards. He didn’t need the cards, remembered his lines, and did it all in a British accent. I told the other parents that it was the weirdest thing that he started speaking that way after the surgery and most of them believed me (except maybe the mom of the girl that was the famous bird watcher, but they are a very smart family).

    And speaking of British accents…one of my favorite scenes in Glee was the one in which Becky’s inner voice sounded like the Queen of England. It seemed reasonable.

  4. This is a most useful coitnibutron to the debate

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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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