Last week one of Louie's language therapists asked me a question that stopped me in my tracks. She asked who I thought Louie was taking after - me or my husband. I stammered around and finally told her I couldn't answer the question. I couldn't answer it because I, his own mother, have been viewing him through the lens of his disability which is exactly what we ask the rest of the world not to do. I have been judging him and attributing everything about him, his appearance, his personality, his habits, all around this label of Williams syndrome.
I emailed the therapist to let her know what an impact her question had on me and suggested she ask this question of all the families she works with. She has a brother with Down syndrome and this was her response:
"I used to think of my brother in the same way. Carter looks like a kid with Down syndrome. It wasn't until the past few years that I started noticing the similarities between him and the "rest of us". It was kind of cool. I had the exact same realization you did. It was kind of an ah-ha moment when I realized he was made up of so much more than a kid with Down syndrome. He's the son of a shy farm girl from NC and a Type A retired marine. He has fair skin like my mom, a hairy back like my dad, and an affinity for sweets like me! Each year I can see more and more of my parents' and my personalities and physical features in him. Anyways, I'm rambling. Just something fun and valuable to think about."
And how right she is. It is a very valuable thought. It brings tears to my eyes. Knowing that I, the person who is supposed to be completely tuned in and sensitive to Louie, has judged him in the worst of ways. The nice thing is that beginning today, I can change that. I can see that he got his beautiful crazy blond hair from his father. And his love of books from his mother. And his sensitivity to others from his great-grandfather. Louie is not just a genetic anomaly. He too has a heritage and we must honor that. Starting with me.
Wednesday, March 12, 2008
The Question I Couldn't Answer. Until Now.
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5 comments:
That is an awesome question and I never really thought about it. Don't beat yourself up to much, I am guilty too.
I am guilty too. Sometimes when people ask where Abi got her big beautiful eyes, all I can think is WS. BUT she could have got them the same place her brother and sister did! Makes you rethink things a little.
Noel
While a lot of us are guilty of this, I think it's only natural. When you have a young child with special needs, so much of what you do on a daily basis....go to meetings, therapies, shopping for adaptive equipment....that the focus often is on the disability. All those things that have to be done, have to be done because your child has a need. It is so very important to remind ourselves on a regular basis that there is more to any one child than his/her disability, but it's certainly not easy.
So very true. I'm so guilty of this - thank you for posting this.
Wow, I got chills. How guilty I am. Since Lauren was born, every one always says, "Lauren really has her own look, not like your other two girls," not knowing about WS. I see it so much in her face. One of her therapists says it's a cute syndrome. I agree, I think they are all adorable, but I will make every effort to see her without the WS. THANK YOU!
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