22 hours ago
Friday, May 29, 2009
The reality checks you get about your special needs kid
As you know from the photo extravaganza I've subjected you to this week, we had a spectacular time on the cruise. Going on vacation with the kids is generally amazing. When you're a working mom, as I am, you experience the pleasures of being a full-time mom (with the perks of prepared meals and maid service). Being in a new setting, though, also means I get lots of little reality checks about having a kid with disabilities.
When we're at home, I rarely sit around thinking about Max's challenges. If you'd told me I'd ever reach this place years ago, I never would have believed it; when Max was very young, I so feared for his future that all I could see were the things he had trouble doing. Now, when I hear him trying his best to say words, I hear communicating. When I hold his hand, I feel the warmth and pleasure of his touch, not muscle tightness. When I look at him, I see a beautiful little boy with floppy hair and a smile that's like sunshine.
But when we leave our routines and comfort zones and the cocoon of our home, neighborhood and places we know, suddenly I have all these "Oh, I have a kid with handicaps" moments.
On the Disney cruise, the kids' club was willing to accommodate him, even though he wasn't potty trained like the other kids, but we had to be on call to come and change his diaper.
We couldn't go for family dinners at the restaurants or go to shows as a foursome, because the noise made Max wig out.
I'd notice people staring at him, oftentimes with a sympathetic look on their faces.
Once, a mother asked about Max's condition, and when I said he had cerebral palsy she asked, "When is he going to get braces?", clearly not realizing that he walks pretty damn well and that cerebral palsy comes in many different forms.
There were all sorts of little "Oh" moments like these. They didn't bum me out. Well, OK, maybe a little, but it's impossible to stay bummed in the bubble you exist in on a Disney cruise. Besides, I knew there's much to celebrate and be grateful for. Because this is a child who amazes me, impresses me and melts my heart every, single day.