Friday, I was filling out a form for a program I was taking Max to the next morning, sponsored by the local ARC. The kids play games, do crafts, have lunch, hang out.
Name: Max
Nickname: Spaghetti Sauce Max
Child likes: Best friend = Caleb, spaghetti, the color purple, trucks, cars, spaghetti, cars, coloring, did I mention spaghetti?
Dislikes: Anything loud
Describe what motivates your child: Discussing spaghetti and sauce and repeatedly saying "Max eats spaghetti with sauce." Also, anything purple.
How does he/she calm down? See above
As I wrote, I stepped outside of my head. And wondered whether the staffer reading the forms would think Max was...quirky. Weird, even. I find his obsessions cute and fascinating (mostly). But the act of writing them down made me ponder how someone else might view his spaghetti fixation.
I have been thinking a lot lately about how people see Max. This is not simply because I want him to fit in, so to speak. I ache for people to look beyond his disabilities and see the charming, funny, smart, complex kid I know. I want them to see Max, all of Max. Not just a child with cerebral palsy.
Then I got a grip: In the special needs community, there is no such thing as weird. For the people at the programs we go to, the teachers at Max's school, the therapists in his life: quirky is the norm. I may have a ways to go to get the world at large to see the wonderfulness of Max. But in the inner circle of special needs that we inhabit, he is who he is—and people usually adore him for it.
I finished up the forms and packed up some lunch in a container (one guess what it was). The next morning, Sabrina and I drove Max to his program. The woman running it glanced at his forms and smiled.
"Hello, Spaghetti Sauce Max," she said.
Photo/Donkey
