Last week, I read an article about a teenage boy who took a girl to the prom. It was squashed between an announcement about the royal wedding and some pictures of a hairless cat. At first glance, it didn’t seem particularly noteworthy. To tell you the truth, I almost scrolled right past it.
Then I took a closer look, and I read the headline. It said the boy took a girl with Down Syndrome to the prom. The piece talked about how amazing he was—how selfless and kind.
I can’t lie. It touched a nerve in me.
At first, I couldn’t quite figure out why. I mean, what this boy did was very nice, and it was kind.
But it didn’t feel nice. It felt weird. It felt like cloaked within the narrative were seeds of language that suggested a masked benevolence—a self-serving celebration beneath a brittle shell of kindness.
I mean, would it have been newsworthy if he took a girl to the prom who had diabetes?
Or was overweight?
Or perhaps a different race?
I didn’t always feel this way. Things used to be simpler for me. Once upon a time, I probably would have scanned this same article and thought, huh. That’s nice.
Unfortunately, I don’t have that luxury anymore. See, I have a special-needs son of my own now. His name is Jack. He is fourteen, and he has autism.
Can you do me a little favor? Will you take just a second, and imagine how it feels to have to actually praise people for spending time with your child? You know, the child you rocked as an infant and spoon-fed applesauce and waved good-bye on the first day of kindergarten?
The child you think is funny and interesting and maybe sometimes a little pesty, but for the most part a pretty cool kid?
Jack is funny.
He is interesting.
He can be a little pesty, especially when he recites the running time for every Disney movie ever made.
The thing is, he was born this way. He was born with a brain wired for collecting data about movies, and limbs that twitch and dance on their own accord.
He had zero choice in the matter.
He was born different, and he didn’t even know it.
So, what do I want?
It’s hard to say. I mean, like everything that surrounds my complicated child, this issue is, well, complicated.
I know he isn’t easy. He can be difficult to be around at times.
He jumps around constantly.
He thinks the government has created a conspiracy theory about Oreos.
He is very rigid and gets very, let’s say, annoyed if he doesn’t have ice cream every night after dinner.
He will pretend to listen to you talk about things you like to talk about, but really he is just tolerating you until he can get to the stuff that interests him.
At the same time, he is a boy who craves to be like you and me, with our easy laughs and our gentle banter and our calm, still bodies.
He is a boy who wears size 13 sneakers.
He is amazing at the game Twenty Questions. It’s uncanny the way he guesses the right answer every time.
He has no room for small talk. Empty pleasantries are meaningless to him.
No, he wants to dive right in with you, like a swimmer into the deep blue sea. He wants to know if your grandfather went bald at an early age, or if you have ever marched in a LGBT parade, or how you feel about people owning pit bulls.
In the blink of an eye, with just a few questions, he’ll have you thinking about what its like to age, or gender equality, or animal rights.
So, what do I want? I don’t know.
Wait. Hang on a second. I do know.
I want the celebration to stop.
I want people to stop patting themselves on the back for interacting with those who are different. Stop bragging about how your kid eats lunch at school with the girl who has an IEP. Stop using words like little friend. Stop praising one another for simply being good human beings.
Like I said, I didn’t always feel this way. But now I do.
See, a long time I ago I promised myself I would see Jack for who he is, rather than what he has.
Trust me, this is very, very hard sometimes. There are days when the lines get blurred, and I look at my tall boy with his blue sneakers and all I see is self-stimulation and rigidity and conversations about conspiracy theories.
I have to work to peel back the spectrum layer, and remind myself of the child underneath. It is hard. It takes time. It takes patience, and determination, and a lot of energy. I’ll admit it—I don’t always have the right combination of these things.
There is so much I can’t do for this boy.
I can’t make his autism go away.
I can’t make a company hire him, or a bank give him a mortgage.
But I can do one thing. I can make sure he travels through life with dignity, and self-respect.
I can make sure this infant I rocked through the night and spoon-fed applesauce even though he spit it right back out and waved to on the first day of kindergarten as the small bus pulled away, knows that he is different, but he is equal.
He is not an act of charity.
He has value.
My son has something to offer. I can’t decide if it’s because of his autism or in spite of it, but it doesn’t really matter.
You would like him. I know you would.
You would like his slow smile, and the way his face lights up when you tell him your grandfather has a full head of thick, curly hair.
You would like how honest, and real, and pure he is.
You will never meet another person like him in your whole life.
Please, try and see our side of the story.
Everybody is a book of blood; wherever we’re opened, we’re red.