Wednesday, January 21, 2004

The View From Holland

I think every parent of a special needs child asks themselves the same question from time to time. If there were a magic pill that could make my child's condition disappear, would I jump at the chance? It is, of course, a completely academic question - and a loaded one at that. We'd all like to believe that we accept our children exactly the way they are, yet who in their right mind would *not* want to remove any possible obstacles to their success and independence?

Having a son with Down Syndrome has opened my eyes to the thousands of small gifts most people take for granted, like hearing his perfect little heart beat, seeing him run and climb, and listening to his vocabulary grow every day. Moreover, I have connected with moms all over the globe and have found common threads with people I ordinarily would not encounter in my narrow little world of liberal California Jews. All we have in common is a child with “enhanced chromosomes,” as we like to put it, and the essential conviction that our children’s disabilities are, in reality, a blessing for those who choose to see it.

I do believe this most of the time, as I watch Bug happily chase after ducks in the park or wave a friendly “bye-bye” to the moon. Other times, well – let’s just say it’s not always hearts and flowers and gentle little angels sent from above. My spirit soars when Bug gets off the school bus, throws his arms around me and says “HAPPY SEE YOU!!!”, but it breaks my heart that he simply does not have the ability to tell me how his day was or what he did in class. I love watching him melt hearts as he dances with joyful unselfconsciousness during synagogue services, but minutes later I am red-faced with embarrassment as I frantically try to keep him from running with glee into the street outside. I try to tell myself that he is hardly the only 4 year old who acts up sometimes, but the hard truth is that a typical child his age can understand and comprehend the danger of running into the streets in a way that Bug does not.

Things are both easier and harder now that he is older. In the beginning I purposely kept myself in constant denial about his delays, only to be smacked in the face with reality every time we went out and saw kids half his age running around, talking, picking Cheerios daintily out of a cup – while he was still struggling to sit up straight and hold his own bottle. After four years I am able to truthfully rejoice in his many accomplishments and no longer make the mistake of comparing him to others. Still, I cannot deny that I see the gap widening between Bug and his peers and it makes me ache for him. The kids he has played with all of his life, through thousands of games of peek-a-boo and pretend tea parties, now want to play Go Fish and checkers while he only wants to fling the cards and game pieces around the room. The summer camp and Sunday School programs he has enjoyed may be out of reach for him soon, as the activities grow more sophisticated and the expectations higher.

Every mother wants her child to be well-behaved, to impress others with their charming personality and perfect manners, their intelligence and cleverness. Because Bug IS Down Syndrome to many people in our community, I feel tremendous pressure on us to "represent" it in a positive way. I cringe when he misbehaves in public for fear that he will reinforce people's stereotypes about kids with Downs being wild and uncontrollable, not someone they’d want mixing with their kids in a public school classroom. I hate that people look at me with pity or relief that they are not in the same boat. I guess if I DID have a magic pill I would use it on everyone else - to open their eyes to the beauty and diversity of all people, and to the inherent value of people like Bug. I wouldn’t use it on my son, because he is perfect the way he is.


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