On a recent Saturday, Max and I raided the library for books about cars, took a walk in the park and had lunch at his favorite Italian place. The meal morphed into something truly amazing.
Max got ziti with butter, every last inch covered in ketchup, and after a brief stand-off in which he tried to get me to feed him (I refused, unlike some other parents I know named Dave) he chowed down with gusto. "Hi, Ellen!" I heard. I looked up; a nice woman I know from around town had sat down at the next table with her son. A. is 12, and has never met Max. We all talked as Max concentrated on eating; he stopped chewing only to say "I'm Max!"
When Max finished, he told me a few things, including that he wanted to go check out the train station afterward.
"Why's he mumbling like that?" A. asked.
I do not mind questions like these, not at all, especially because fielding them is far better than noticing the kids who just blatantly stare at Max, as a couple did when we walked into the restaurant.
"He has cerebral palsy," I explained, "and that means your muscles don't always do what your brain wants them to do. Your tongue is a major muscle, so he has issues with moving it and that's why his speech sounds like that."
A. paused. "Ohhhhh," he said. "He has rebel muscles!"
I smiled. "That is the best description of cerebral palsy I have ever heard!" I told him.
Max hadn't been listening, so I filled him in. "Max, I told him you have cerebral palsy," I said, "and he said you have rebel muscles!"
Max seemed to like that, too.
So often our kids' challenges are described in terms of impairment (disability, special needs), words that encompass their entire beings. But "rebel" makes it clear it's just a part of them that's acting up. It doesn't let their challenges define who they are.
A child with Down syndrome has a rebel chromosome.
A child with autism has rebel senses.
A child with a genetic condition has rebel genes.
A child with hearing issues has rebel ears.
A child with vision issues has rebel eyes.
A child with developmental delays has rebel timing.
Follow Ellen Seidman on Twitter: www.twitter.com/@LoveThatMax