Seeing Down Syndrome or Seeing Penny?

Seeing Down Syndrome or Seeing Penny? February 23, 2012
My very favorite of Reed Young's fabulous pictures from our TIME photo shoot

When Bonnie Rochman was writing her article for TIME, she asked me (per her editor’s request) to describe “what Penny can and can’t do.” Here’s what I wrote in response:

I’ve been thinking all morning about how to answer your question. It’s harder than you might expect because we don’t think about Penny in terms of can and can’t, although we do think about her in terms of what she loves and what she resists, which is probably close to what you’re getting at . . . Having Penny in my life has taught me a lot about trying to understand all people in terms of identity–what and who they love–first, and ability as a secondary measure rather than evaluating primarily on ability.
With all that said, here’s an attempt:
On a physical level, Penny is smaller than most of her peers. She wears braces on her ankles to support her feet, which are pronated. She can run, throw a ball, kick a ball, play hopscotch, and ride a bike with training wheels. She is learning how to jump rope. Her stamina and speed are not the same as her peers. She attends a weekly ballet and jazz class with other 6-year olds, and she does her plies, bourres, releves, kicks, jumps, and twirls just like the rest of them. (For more on this, see Down syndrome, dancing, and delight.)
We recently discovered that Penny has a moderate hearing loss in both ears. The loss may be entirely due to fluid in both ears, or it may be a combination of permanent mild hearing loss that has been compounded by the fluid.
In the classroom, Penny needs assistance from her teacher to stay on task, but with that support she is able to learn everything else her peers are learning, which is to say, reading, writing, basic math concepts, and basic social skills. She has a best friend, who is a typically-developing little girl (coming over for a playdate this afternoon). She loves reading out loud, and she can sound out or identify by sight dozens of words, if not more. She can articulate her needs, wants, and feelings in full sentences, though strangers might find it difficult to understand some of what she says. She can get stuck in patterns of behavior or speech–asking a question over and over even once she knows the answer, reprimanding her little brother even after he’s stopped whatever prompted her frustration.
And my second favorite...

Penny has trouble with spatial relationships, so puzzles challenge her. She enjoys playing basic kid games like Chutes and Ladders. She can cut with scissors. She can get herself dressed, wash her body and hair with minimal assistance (but some prompting), and she is quite intent on learning how to tie her shoes. So far, she can do the first step but she gets stuck with the lace in a “bunny ear.”

Here’s an anecdote that might demonstrate what she can do as well as a bit of her personality. I told her last week that my grandfather had broken his leg. This morning, without reminding her of the specifics, I asked if she wanted to send him a card. “Yes,” she said, “I will write: To Geeka. I hope your leg feels better. Love Penny.” I stood in the kitchen and helped her sound out a few words, and she wrote the following: “I hope ur leg fls bdr. Love Penny.” She realized at the end that she had forgotten to address it, so “to Geeka” appears at the bottom of the note.
The most wonderful thing about Penny is her concern for other people–her insistence that she give Marilee a hug and a kiss as soon as she wakes up, her desire to cuddle with me when she gets home from school, her requests to pray for anyone we know who is sick, her desire to invite a new classmate over for a playdate so he would feel more comfortable in school. I’ve heard people say again and again that people with Down syndrome are “sweet and loving.” I resist the generalization because I don’t want to put Penny into a category, and because she can be as petulant as any other child. But sweet and loving are still words that describe her well. I guess I can write a list of what she can and can’t do, but I think that list matters only as it gives a sense of who she is, a little girl who loves much and who is very much loved.
**Photographs courtesy of Reed Young

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