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Kerri Kava, Published November 28 2011

Parenting Perspectives: Taking stares, finger-pointing all in stride

This Thanksgiving weekend reminded me of a life lesson to be thankful for. Actually, I have my son, Carter, to thank.

The lesson stems from a recent trip the two of us took to Fleet Farm.

“Just a little longer now buddy, we’ll go look at cows and you can play while we wait for our tires to be put on the car. But please don’t fuss. You know you have to wear your patch for a couple hours every night to help strengthen your right eye.”

The sound of little feet pitter pattering full speed toward his favorite thing – toy cows – my 4-year-old boy with special needs does so with his left eye patched, looking like a pirate, without so much as a complaint.

“Run, run, run …” which sounds like “won, won, won” coming from his little lips as the anticipation grows. We walk in alongside another family with three children, all boys. One boy is old enough to wonder, “Why is there a patch on that little boy’s eye?”

Carter, who has Williams syndrome, a condition in which strabismus (a fancy term for when your eyes do not line up), heart complications and developmental delays are common, never notices or picks up on the social cues of him being different. I find that a blessing. I wish I didn’t detect it. Then, it wouldn’t plague my heart so much.

My husband is exceptional at ignoring or not even noticing other people staring, he just goes about his business and sets his mind toward the goal, whatever that may be.

I’m not as good at that. I notice other people, even adults. Truth be told, I think its other adults who make it most difficult. Had that mother stopped staring, maybe she could have demonstrated to her child the correct behavior: to move on with your business and not stare, because it isn’t polite. This is merely conventional manners right?

If you see a burn victim or a person with dwarfism, yes their appearances may be different, but that does not make it OK to stare, much less point, which occurred later in the same visit to the store. Perhaps I shall pretend they are staring because of the brilliant blue eye that is showing or his amazingly captivating smile.

Carter has struggled with his eyes since he was a newborn. We patched his left eye for a couple of years before finally having a surgery to correct the crossing last spring. A few follow-up appointments later confirmed he needs to start patching again. In efforts to avoid a second surgery (where anesthesia is often fatal for people with Williams syndrome), we are patching as instructed by his eye surgeon.

A couple of years ago, I remember standing in church, singing songs with my family, not able to focus because of two children in front of us that absolutely could not stop staring at his patch. Another year later, no patch on, a woman felt the need to point out that he had strabismus, as if we had no idea. I like to think this doesn’t get to me, but I would be lying if I told you it doesn’t hurt.

I understand people are curious, especially children, and I’ll be the first to tell you that I adore children and their curiosities. I think instead it’s something special needs parents need to work through, understanding your child is different and special, and knowing that with those special attributes come special challenges.

Learning to sit up, crawl and walk were very difficult for him. Now he is working hard on talking. And like many other children who don’t even have special needs, he needs to train his eyes not to cross. Our little boy, full of joy, lets you put the patch on and simply wrinkles his face a little when he knows it’s coming, saying “OK.”

If we all have this “can-do” attitude to whatever challenges we face, what a better world we would have to live, learn and love in.

Kerri Kava is the Newpapers in Education coordinator for The Forum.