Tuesday, October 16, 2007

Pain? Disability? Hardship?

I just read an interesting article in last week's Newsweek, about Holly Robinson Peete and the widow of Brandon Tartikoff. The article is part of a series about women and power. In this article, there is an emphasis on the hardships and pain that both women have faced: Tartikoff's husband died of cancer and her daughter suffered brain damage from a car accident, Robinson-Peete's father (Gordon from Sesame Street!) died of Parkinson's and her son has autism.

The article made me wonder, though, about the words we use to describe life. Is it a hardship that my daughter has Down syndrome? Do I feel pain because one son has dyslexia? Are Micah's food allergies a "disability" to him?

I spend so much time looking at all the positive things about my kids - how incredible they all are, what their unique talents and personalities are, how they handle their individual lives - that I sort of get pushed back when I hear the "sad" words applied.

I'm NOT sad that Sofia has Down syndrome. I'm thankful that she is able to do so much and that she is so much fun to be with, and I consider myself so lucky to have been included in this special world of T21.

I'm less positive about Sam's dyslexia, because of his personality. This will always be a challenge to him, and he gets so anxious about everything. So I worry about him. But I wouldn't trade his creativity for anything.

I fear for Micah's health, if he eats something he is allergic to, but I also know how to deal with it - a few weeks ago he accidentally ate some crackers with sesame, so I gave him Benadryl and watched him carefully for 2 hours, but the few hives that appeared quickly went away. And I am so impressed with how he handles it himself. He's very cautious (usually!) and very clear about what he can and cannot eat. He's calm, and neither panics if he's near something he can't eat nor gets overly jealous about it.

So I don't consider that our family has received an unusual amount of "pain" or "hardship". Ours is just more concrete, more definable, than others. We have a loving family, the monetary means to live the way we want, the resources to get our children the best education and health care available, and the community to feel comfortable and at ease with ourselves.

It will be interesting to see how the Transition from Early Intervention to public preschool goes. My online friend A recently wrote on our discussion board about getting her daughter's eval, and how it's difficult, because in every-day life, we are so accustomed to focusing on what our kids CAN do. Having to evaluate my daughter in terms of what she CANNOT do, or what she IS DEFICIENT in, requires a big mental shift. And, as A stated, it's absolutely necessary to define the deficiencies, because otherwise our kids would not be eligible for services!

Ok, enough musings. Sofia is sound asleep (yes, she fell asleep...in the car...at noon today, but only because we were out shopping all morning) and I should do some homework. I bought bth boys little MP3 players - it will be a birthday present for Micah and a treat for Sam, so don't tell! They were really cheap - 1 Gig for $25, little clips to attach. Should be fun. They'll be great for our trip to Israel in December.