16 hours ago
Friday, June 22, 2012
Raising kids with special needs and roller coaster days
About Max and roller coasters
Max has this fascination/fear thing with roller coasters. He's never been on one, but when we're at an amusement park he'll stand and stare at them, mesmerized, then shake his head and say "Nooooooo!" Then I have to say "Not for Max!" to reassure him that we won't be taking him on one.
Today, we visited Max's physiatrist after his physical therapist at school expressed concern about his hip, and how it might be forcing his right foot to turn inward. The foot that he got serial casted last summer. I talked my way into an a.s.a.p. appointment because I was so concerned. Max's walking is a miracle (I do not use that word lightly) and anything that threatens it is A Big Deal.
Not to worry, the physiatrist said after he examined Max, and I just about swooned with relief. Max's hip looked fine to him, and he said he was walking well. The doc was especially impressed by how far along Max's comprehension had come, and his ability to stay calm—as a toddler, Max wailed his heart out at these appointments.
Score 1 for Max, 0 for cerebral palsy.
Me, going down
We're back home. Max is playing with a toy truck, and I'm filling out an application for long-term care insurance; Dave and I are considering it. It's the usual form mumbo-jumbo. Then I get to a list where I have to make a check if I have one of the following: multiple sclerosis, Parkinson's, Alzheimer's, cerebral palsy. A note in small type below the list says that if I've checked any of the above, I shouldn't continue filing out the form.
At age 9, Max would not eligible for this insurance because he has a condition that the company considers to be as degenerative as Parkinson's and Alzheimer's.
I am sad.
Me, going up
Max asks if I'll take him on the train. He doesn't have school, I'm off from work so sure, why not? We drive to the parking lot, buy round-trip tickets and settle in for a joy ride. "Pardon me, do you mind if I ask whether you like those headphones?" a woman seated behind us asks about the noise-reduction headphones Max has on. Turns out she's a local occupational therapist. I've been on the hunt for a new one for a year. We talk. She's worked with kids who have CP, she mentions some innovative-sounding techniques, she seems really nice.
I'm not a big believer in fate, but I am a big believer in the power of coincidences.
"Max, would you like her to come play with you?" I ask.
Max eyeballs her. "Eee-yah!" he says.
I get her card and we get off the train. I'm excited.
Me, going down
There is a big staircase at the station that'll take us to the other side for the return trip home. A conductor on break glances at the braces on Max's feet and gives him a pitiful look. "Awww, honey," she says. "Do you need an elevator?"
"Actually, he can handle stairs pretty well," I tell her.
I know she only means well, but I can't stand the pity.
Both of us, going up
Max keeps looking down the track for a glimmer of train. Soon enough, he spots it and he squeals. Few things make me feel as good as that squeal. We get on, grab seats and he contentedly stares out the window till we're at our stop. As we get off, a crew person helps Max down. Max gives him a high-five.
The two of us head back to the car, happy.
Roller coaster photo/The Two K's