Penny
turned five on December 30th. She’s taking her new age very seriously. Since
the big day, she has “controlled her hands” without instruction. On the rare
occasion that her behavior warrants a “time out” (for some reason, our children
just cannot resist saying “poo poo” at the dinner table), she doesn’t protest,
but scurries into the corner and waits for the time to be up. In addition to
the behavioral changes–small, but significant–she looks older, she acts older,
she’s even talking like an older child. The talking comes through more and more
complete sentences, as well as the frequent, “And how was your day, Mom?” or,
“Mom, that’s ridiculous.” But my favorite was when she came home from school in
a new shirt after hers got water all over it. When we were changing into
pajamas, she said, “Mom, first I need to show Dad my new cool shirt.” Cool
shirt?

I
wrote last week about how Penny’s birthday seemed profound and significant
because there wasn’t anything profound or significant about it. In so many ways,
she’s just a kid. A kid getting ready for a new brother or sister. A kid who
sings Rudolph while walking in the snow. A kid who loves to snuggle. Down
syndrome fades into the background of our lives. Some days it’s like a distant
memory. 

But the external reminders remain. I’ve had three jarring episodes in the past week where my experience of Penny (and other children with Down syndrome) butts up against the cultural perceptions of who she/they must be. First, there’s the greeting card on Etsy.com that mocks individuals with Down syndrome. The only reason I’m willing to draw attention to this site is because you can join me in signing a petition to get the cards removed. Second, I went to my doctor for my 38-week pregnancy checkup. I was glad to hear that they had finally amended their new patient survey. Up until a few weeks ago, it included the question, “Does anyone in your family have Down syndrome (mongolism)?” They took out the “mongolism” clause. It’s a bit outdated, you know.

Third, I filled out forms for Penny and William to visit the dentist. William’s was easy. No health issues. No allergies. Nothing unusual. Penny’s wasn’t that tough at first–ear tubes, glasses, a procedure to close a hole in her heart. But then I got to the question: “Has your child ever been diagnosed with the following…” and the subsequent checklist that included “developmental delay” and “mental retardation.” Has my child ever been diagnosed with mental retardation? It might seem odd to write this, but I actually don’t know the answer to that question. I was told in the hospital when she was a few hours old that she would be mentally retarded. Does that count? When she takes a standardized test, she doesn’t indicate any cognitive delay. Does that count? And why on earth does the dentist need this information anyway?

Greeting cards. The Ob-Gyn office. The dentist. Subtle reminders that people see Penny as different, as other.

Oh well. I see her as a part of our family. As a big sister. I’ve said it before, but it bears repeating. I see her, just as I see our other children, as a gift.