Monday, October 20, 2014
The amazing two words a kid said about my son
"Why can't he talk?" the boy asked.
We'd gone to temple last week for the Jewish holiday of Simchat Torah, and Max and I were hanging out in the playroom with some other kids. Max was pushing trucks around, making a fire engine sound and pretending to crash them, and I was thinking about how amazing the imaginative play was because he hadn't wanted to play with trucks when he was little.
A couple of kids were standing nearby. Max looked at them and asked a girl her name. She told him; she was about 8. He asked the boy, and he said his name. He was 7. Then he asked why Max couldn't talk.
I said my usual: "He does talk! He just talks in his own way."
And then, the girl said "He's unique!"
Just two words, but they made my heart smile.
"Yes, we all are," I said.
I regularly explain Max's speech to kids. I matter-of-factly respond to kids and adults who ask me "How old is he?" as if Max weren't there with "Ask him!" Paving the way for conversation and interaction with other people is part of the special needs parenting gig. As Max gets older, I hope he'll forge more connections on his own but for now, I step in to help.
Still, it is so heartening when I am not the only person in the room who gets it. When it's clear that a child's parent has spoken with her about kids with special needs—or just that children come in all flavors. When it's obvious that a kid or adult needs no explanation.
I have come to expect the questions; it's natural for kids to ask about kids who aren't seemingly like them. I don't mind at all when adults want to discuss Max, including strangers, especially since it's preferable over staring. I do not condemn people who seem unsure of how to act around Max or who give him sad looks; before I had Max I was a person who mostly felt pity for kids with special needs. (Although I take serious issue with people who blatantly gawk). But what a thrill it is when you can step back from your role as your child's spokesperson because someone else is doing it for you.
It's rare. When we've been at playgrounds or parties, I've overheard parents telling their kids not to stare but not saying anything else beyond that. I'm usually the one to say, "Come say hi!" It's that simple, as I've said before—start with "Hi." If I'm chatting with kids and their parents are standing right there, I'm almost always the person trying to help make them comfortable with Max and coaxing along conversation with suggestions like, "Ask him what his favorite movie is!"
Perhaps other parents let me lead the way because they figure as Max's mom, I'm the expert. Sure, I am, although there is no previous experience required to help kids connect with each other. Max may seem different, but aren't we all? Every person is unique, that beautiful word that girl used. All kids communicate in their own unique way, move in their own unique way, think in their own unique way. That's a great message to share with children. (Or as Deepak Chopra once said, "Each of us is a unique strand in the intricate web of life and here to make a contribution.") (Not that you need to quote Deepak Chopra to your children.) (This is actually the first time I've ever quoted Deepak Chopra.)
Another great message : A kid is still a kid. There's a mom I know in our neighborhood who has always treated Max like any other child, inviting him to join in bike races or simply asking "What's up, Max?" when she sees him. (Or, more recently, "What's up, Fireman Max?") I wish I could take this sort of thing for granted, but it's not the norm. I am always grateful that to her, he is just another kid. Who happens to wear a plastic red Fire Chief hat at all times.
As parents of kids with special needs, we are advocates for our children every single day. Each of us helps the people in our circles, and others we meet, to better understand kids with disabilities, accept and respect them for who they are and welcome them. Do we get weary of it? I do, at times. Not from the ceaseless effort but because I know that my boy is all sorts of wonderful, and I ache for other people to readily see that, and not just the disability. I would like to have the world on his side. Or at least other parents on my side, helping me teach their kids.
When you meet kids and adults who are already on your team well, then, you feel just a little less alone—and a lot more hopeful.
Posted by Ellen Seidman at 6:38 AM