Monday, April 12, 2010

Preferring Paris

There's a story that makes the rounds on email and other places about preparing for a birth, or as the analogy goes, a trip to italy, only to land in Holland. Out go all the Italian lessons. Stuck with Gouda and herring. Apologies to Holland. There are many fine museums in Amsterdam, and, of course, there's always Delft. There's an inherent snobbishness built into the whole idea of choosing Italy over Holland, and, by analogy, that somehow the special needs child is going to be lacking. Can't get much more insulting than that. Truth be told, I don't want to be in either Holland or Italy. I'd rather be in Paris.

Our daughter is neither Paris nor Holland nor Italy. She is a kid first and special needs kid second. She has a wicked sense of humor. She can tantrum with the best of them. And, so, neither all good or all bad. Just different. Of course I would give anything if she could speak or stand or walk. But she can't. Makes it more challenging. But. Not a disappointment. Would I give anything to hear her say, "I love you, Mommy?" Of course I would. But that doesn't make her lesser. The only way she could possibly be lesser would be if I were a shallow person who cared only about "how it would look" to have a special needs child. There are some parents like that, sad to say, but I am not one of them.

It does take some adapting. There is a kind of initial complaint. A whine, if you will. A question of, but why isn't she precocious like those other kids? A persistent why me? Notice, not why her? Why me? It's natural to be a bit self-absorbed when bringing a child into the world especially when so many of us buy into the"perfect child" brand, and, yes, it is a brand. That is why it's so hard to accept someone less than perfect. There is a desire to consult the brochure. Or ask the travel agent. "But you didn't tell me..." When a child is born with special needs there's no customer service to complain to. One just has to deal.

The reaction snowballs. It's not just your reaction. Or your spouse's reaction. It's the entire extended family. Awkward pause. When Kid O was born, she was a preemie. Only 3 lbs, 8 oz. A sister in-law recommended a friend of hers who had been a nanny to a preemie. The difference is that baby had been in the NICU for six months and was essentially "normal" despite her premature entry into the world. Kid O was and remains intense. What we didn't know was that her nervous system was disorganized. After few days of helping me out, the friend passed her off to me as if she were a football and bolted. I didn't even have to ask, "are you coming back?" I knew she wasn't. And so began a largely lonely journey.

Kid O and I weren't in Paris or Holland or italy. We were in unchartered territory. Not even the medical experts were able to explain to me how to care for her. The more senior pediatrician of this one practice insisted, for instance, that she couldn't possibly be teething at two months. But she was. And in more pain than most. The pediatrician we saw in that practice could not explain to me why she had painful bowel movements. If a person has weak abdominal muscles, that is what will happen. The woman who did the preemie follow up insisted I take Kid O to get her hearing tested. The exam turned out inconclusive. Not because she was hearing impaired but because she was unable to turn her head to indicate that she had heard a sound. I tried to tell the woman in charge of the clinic that Kid O had very acute hearing. A short time later, I removed Kid O from the preemie follow up program. I sensed that the research they were conducting was going to be flawed because they were really bad observers.

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