11 hours ago
Tuesday, July 27, 2010
The best advice I ever got about raising a kid with special needs
I got the following gem years ago from our beloved pediatric neurologist. Max must have been about two. I can't remember the context—I am sure I was reeling off some string of anxieties about what the future held for Max—when Dr. C said, "Don't look at books, don't look at medical records, don't look at charts. Look at your child, and what he's doing."
So simple, yet so monumentally helpful. He was right: stressing about what Max would "be" like was futile because a) nobody knew and b) being anxious and fearful wasn't going to do Max, me or anyone in the family much good.
Sometimes, I will literally just stare at Max and mentally list his latest accomplishments, whether it's saying his sister's name more clearly or feeding himself a bowl of chocolate ice-cream. Sometimes, I'll think about something he is doing today that he wasn't doing a year ago or even a month ago. Sometimes, I'll watch him struggle to do something—say, grasp a crayon—and even if my heart is sinking, I will yank it back up by mentally chanting, "LOOK at his determination. LOOK." Yeah, I talk to myself.
I can't always follow Dr C's advice—there are times when nothing keeps the worries out—but for the most part, I can. Focusing on Max's present keeps me grounded. It's alleviated the stress. It's helped me accept the cerebral palsy.
The reality of Max, when I set my mind to that channel and stay tuned to it, is awe-inspiring.
What is the most helpful piece of advice you ever got about raising a kid with special needs—from an expert, a friend, your mom, whoever?
Posted by Ellen Seidman at 11:30 PM