Max started shuffling his feet as we walked around Mariner's Pier this weekend in Wildwood, NJ. He tends to do that when he's tired, and by late afternoon, he often is. We decided to hit one more ride before leaving, and headed over to The Flying Galleon. After Max walked up the flight of stairs slowly (there was no elevator), we came upon a long line.
Because Max doesn't get wigged out by crowds as much as he used to, we sometimes have him wait on lines at amusement parks. I'd gotten us the alternate-access wristbands just in case and when he sighed and his body listed to one side as we stood there, I grabbed his hand and we headed over to the accessible entrance (aka the exit).
"Why?" Max asked as we stood at the gate by ourselves.
"Because you're tired and if you have special needs you can go in this way," I explained. It's a term I've used since Max was a tot, the one most people understand, although I've never been a real fan. I mean, don't we all have special needs?! Actress Lauren Potter recently summed it up in the "Not Special Needs" video she made for World Down Syndrome Day, noting that people with Down syndrome have the same basic needs as everyone else: education, jobs, opps, friends and love. (Choice quote: "If people with Down syndrome needed to eat dinosaur eggs, that would be special!") As Max gets older, "special needs" is also seeing immature. I've been making an effort to say "disability" when labels are required or straight up say he has cerebral palsy. Still, sometimes I automatically revert to "special needs."
Turns out, Max isn't so into the term, either.
"I don't have special needs," he informed me.
Just then, the guy showed up to let us onto the ride. Once we were settled, I brought it up again.
"Max, sometimes people use the words 'special needs' to describe a disability," I said.
He looked perplexed.
"Max, it basically means that you have cerebral palsy," I offered.
"Yes!" he said, and we left it at that so we could relax and take in the scenery.
Max seemed to be taking this in a literal way: He doesn't have "special needs," he has "cerebral palsy." But as I sat there processing what he'd meant, I wondered if he'd been telling me he didn't want to be treated in a special way. Either way, this was another step toward owning his disability.
When we're out and Dave explains to, say, the waitress at a restaurant why Max is wailing, he'll note, "He's special needs" in front of Max, which drives me bonkers. Obviously, Dave means no harm and I am an editor/writer who cares deeply about word choice. Still, I dislike that it's describing the whole of Max versus one aspect of him ("he has special needs" isn't as encompassing). "He's disabled" seemingly has the same issue: It describes a person's entire being instead of one part of him ("he has a disability").
Ultimately, I am merely the parent of a person with disability, and whatever Max decides on will be fine with me. For now, he's still piecing together what it means to have CP. During the car ride home, I told Dave the story about going on the ride and again Max said, "I don't have special needs!"
I said, "I get it. You have cerebral palsy."
Max looked at me. He pointed to Ben.
"Will he get cerebral palsy?" he asked.
To be continued, as always.