Wednesday, March 10, 2004

Saturday In The Park

I was at a friend’s housewarming party earlier this year when I found myself cornered by C., a woman I barely knew from synagogue.

C: You know, I just dropped my sister off at the nursing home.
Me: Okay. . .
C: Yup, she has a pretty advanced case of Alzheimer’s now.
Me: Ummmm . . . I am sorry to hear that.
C: Of course, my mom raised her with no support from anyone.
Me: Gee, that’s a shame.
C: You’re very lucky – they have a lot more programs nowadays.
Me: They, uh . . . they sure do?

As this inscrutable conversation progressed, I slowly caught on to C’s point – that she grew up with a sister who had Down Syndrome. Once that finally dawned on me, we had an interesting conversation about her mother, who bucked traditional wisdom by refusing to institutionalize her daughter and instead taught her to read and write and sew and play music. I enjoyed hearing about her, but I wondered why C. couldn’t have simply come up to me and said “My sister has Down Syndrome” instead of speaking in barely penetrable code.

I had a similar experience this past weekend. It was the first warm, sunny day we have had in weeks, and as soon as the kids were dressed I took them out to the park to play. I noticed a woman eyeing us, and after a while she came over and said “Hi Bug, how are you doing?” “Oh, do you know Bug?” I asked, thinking maybe she worked at his school. “No,” she replied. “I have Sara.” “Sara? Oh, where is she?” I wondered, looking around the playground. “In Beirut,” she answered. I waited for further explanation, but there was none.

Okay then. I continued chasing after the kids, made sure Bee didn’t swallow too much sand and mediated disputes over the various pails and shovels strewn around the sandbox. Soon the woman came over again. “Sara goes to a public school run by UNICEF. She speaks English and French.” “Wow – what a smart girl,” I commented as I ran off to prevent Bug from breaking his neck on the big slide. When he reached the bottom, she reappeared at my side. “When Sara was little, we used to hold her by her legs and have her walk on her hands. Now her hands are very strong and she can write well.”

After 20 minutes of this, I finally grasped what she could have told me from the start, if only there wasn’t some strange stigma about using the actual term Down Syndrome. Did she think I would find it offensive if she mentioned it by name?

Interestingly, as the morning wore on I DID become offended, or at least highly irritated, by her general attitude. She was extremely educated and has served on Down Syndrome committees in the many countries she has lived during her husband’s tenure with the U.N. That was part of the problem. She began giving me well-meaning advice about Bug, recommending some techniques to help him learn to read and advising me on what to look for in a public school inclusion program. All that was appreciated, but dozens of suggestions later I started to get annoyed by the implication that I am completely uneducated and uninformed about Bug and how to help him. “You should remind him to close his mouth - even use a pin to poke his tongue,” she would say (AS IF!!!), or “Don’t let him jump on trampolines, his neck could be very fragile.” Worse, she kept following up her ideas by saying “And that’s why you should join the local Down Syndrome group – so you can learn all of these things!” While I nodded politely, I fought to subdue the urge to scream “What in the world makes you think I have no idea how to parent my own child?”

What bothered me even more, though, was the way she kept looking at Bug and commenting on everything he did, all viewed through the filter of his disability. “Oh, see, he is trying to jump – he probably won’t be able to do that for another year at least,” she’d observe, or “Good, he is running across the wobbly bridge – that is great therapy, it helps their balance.” Even though she was a special needs mom just like me, she did the same thing I accuse others of, seeing only his syndrome and not the whole individual. When I mentioned how much he loves to dance, she commented “Oh, they just love music.” Hearing that he enjoys playing golf with Chef, she replied “Yes, they are great imitators.”

Why can’t Bug be an ordinary little boy who loves music and dancing and playing with his daddy instead of a stereotypical cliché? I brought Bug and his sister to the playground so they could romp and play and get dirty and enjoy the fresh air, not for Bug to be scrutinized like a specimen on a slide. Fortunately the kids were so active that, by frantically running around in pursuit of them I was finally able to shake the woman.

The next person I sat next to was a grandmotherly type who was there with a sweet two year old in a frilly sundress. She smiled warmly while she gestured helplessly. “No English . . . Romanian.”

“Ahhhhhhhh,” I sighed happily – and there I stayed.


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