Saturday, January 15, 2011

Day 19: Ups and Downs

This morning Simon and I went to the bookstore to pick up the texts that the OT recommended. Simon loves the bookstore -- he loves the train table in the kid's section, the new books to look at, and the fact that I will (almost) always buy him a "sprinkle cookie." Most of all, he loves that there is an escalator and an elevator within close proximity to one another in the center of the store. Every visit we go up the escalator and down the elevator. A few times. At least.

It wasn't crowded at all this morning, so we made a few extra up-and-down trips. Simon isn't exactly quiet about his elevator joy, so I wasn't surprised to see an older woman watching us. At first, I thought that she was watching because she thought Simon was cute (well, he is adorable), so I smiled at her. Instead of smiling back she quickly looked away. Twice.

Shy? Maybe.

At checkout, we ended up behind this same woman. She continued to take sidelong glances at Simon, who, at that point was singing to himself and spinning in circles. She also took a good look at the books I was carrying... and back at Simon... and back to the books... and...

Oh. Right.

I tried to see if I could catch her eyes, but she was quite determinedly not looking up. She'd noticed that something was "different" about Simon, and the titles of the books I was buying confirmed it. In addition to spinning, and singing, and repeated enthusiastic trips on the elevator, Simon's cast is apparent, you can tell his feet are different sizes from the brace he wears, and he was drooling quite a bit. Perhaps she was curious. Perhaps she was feeling sorry for him. Maybe she was saying a silent prayer for my sanity and his well being.

Maybe she was just being rude.

Some days, I feel like we put the "special" in special needs. I'm sure every parent with a differently-abled child has these moments -- and depending upon the visibility of the "difference" they happen more or less often. Myself, when they arise, I try to handle the instances with as much humor and grace as possible.

My favorite such instance happened a couple years ago in a busy restaurant at lunchtime. It was the last week of class for a local boy's school; and they'd clearly had a half-day because the little pizzeria I was in with Simon was full of teenage guys in ties and sport coats.

Simon had (and continues to have, though we've seen some recent improvement) a pretty strong gag reflex, typical of CP kids. Because of this, he often vomits while eating. It generally happens completely out of the blue, and usually at the worst possible moment. Over the years my reflexes have gotten better, and when he starts to retch I quickly lean in and try to catch as much as possible. Better on me than all over the restaurant table (trust me on that).

Yes, that's right, I catch the vomit. On purpose. I do use a napkin if I can grab it fast enough, and in later days experience has taught me to travel with a disposable "big gulp" cup to catch and contain such situations. However, in this particular case, when Simon's pizza started to come back up, I was bare-handed.

I was pretty pleased I managed to catch everything, but then I noticed that the entire restaurant had gone silent. I'd had no idea we were being watched, but the throng of noisy teenage boys had been horrified into complete and utter silence by our little spectacle.

Perhaps, if that had been the first time I'd been caught in a compromising situation because of my children, I'd have been embarrassed. As it was, I couldn't help but think it was funny. I turned to look those horrified, skinny, acne-laden boys full in the face, vomit held securely in my cupped hands, toddler crying because he was mad he'd lost his pizza, and I smiled. Broadly.

In as clear a voice as I could manage I announced to the room, "And THAT is why you don't have sex before marriage."

My pediatrician just loves that story. He's convinced I may have saved some kids from teenage pregnancy. I do hope he is right. I sure got a good laugh out of it.

Lately, it seems that the bigger Simon gets, the more often I run into this situation (not the vomiting -- the awkward reactions part). The older he is, the more people seem to notice that he is different from others. I've also become more sensitive to it. Even when I am out by myself and observe people with differences in day-to-day life, I'm sensitive to the way that they are treated, to the way many people react when in close proximity to someone mentally or physically challenged.

I find that people avoid looking them in the eyes, or looking at them directly at all. People with challenges are given a wider berth, or are generally avoided. Sometimes it occurs to me that by trying to be "polite" and not stare, not look, not address the differences directly, society is trying to render such individuals invisible.

I wonder how this will effect Simon as he grows, if he will one day become aware of the different way he is treated by strangers. If he will feel angry, or sad, or embarrassed.

I hope not. I hope that he will treat any such situation with humor, with grace, and with the same open heart he brings to the world now. I will try to lead by example, to be open about what makes us unique, to laugh at ourselves and the ridiculousness of it all. And, I have a feeling that he will be okay. Because, if there is one thing I do know, it is that my little guy indeed defines the "special" in special needs.

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