Last week, someone named Brian sent me the following message:
Let’s say the medical community announced they have a cure for autism.
It’s a 15-second shot in the arm. It has no side effects, and twenty minutes after your son receives it, poof! He would turn into a perfectly normal boy.
Would you give him the shot?
When I first read it, my mind went blank, like an empty sheet of paper. I’m serious. I couldn’t come up with an answer. But over the next few days I thought more and more about it.
Would I change my 12-year old son Jack and take away his autism?
Would I take away his rigidity and anxiety and impaired speech, and replace him with a boy who loves soccer and gets really good grades in a regular public school and doesn’t need to take medicine to sleep at night?
Yes. I think so. Yes.
I don’t know.
It’s a good question—one that makes me examine my heart and my soul and my purpose and my future.
The truth is, my life would be a lot easier without autism.
I would never have to go to another IEP meeting.
I could walk right by the Melatonin in Walgreens.
I could forget about the time Jack marched into our neighbor’s house and shouted, “My mother. Would NEVER. Let us keep it so messy. Like you.”
I promise you, if this hypothetical shot was available at that very moment, I would have poked him in the arm myself. For real.
I mean, some days are bad and other days are good and right it’s kind of in-between because he won’t stop singing Ring Around the Rosy over and over under his breath. It’s driving me a little nuts, to be honest, and the other day I shouted at him to stop it before I lit my eyelashes on fire.
He looked at me blankly, and started right up again.
Ring around the rosy, pocket full of posies.
His life would be a lot easier without autism, that’s for sure. For starters, he could sleep through the night.
I mean, can you believe I have never, even once, had to wake him? I have never had to nudge his shoulder, or stroke his cheek, or call his name to lure him out of bed in the morning.
If he was a normal boy with normal sleep rhythms, I could walk into his room half an hour before school and nag at him to get moving.
Ja-ack! Come on! Time to get up.
Instead, I walk in and I see him huddled under the covers with his eyes open wide and I wonder if he’s been up all night while I slept peacefully down the hall, and I feel terrible.
He could ride the big bus to school instead of a minivan with a sign bolted to the top that says School Bus in grimy block letters.
Personally, I don’t care if he rides a magic carpet to school, but he does. He cares. And as his mother I would do nearly anything to take away his sense of loss, and alleviate a loneliness that is so palpable, I can hear it’s heart beating within the walls of our house.
So yes, I would change him.
But on the other hand, is it really such a big deal? Autism is nothing more than a neurological disorder –the unexpected conclusion of wonky genetics. That’s all.
It isn’t life threatening. It won’t hurt him.
Unless, of course, he sets the grill on fire when he turns all the knobs on at once the one single minute we aren’t looking even though we have told him over and over not to touch the grill because it’s dangerous, but he has a 7-year old mind inside of a teenager’s body and he went ahead and did it anyway.
Or he runs behind a car in the parking lot when he races up to it to read the license plate because he’s obsessed with license plates and the driver doesn’t see him and we warned him over and over again not to bolt away from us in a parking lot and I can’t get to him fast enough.
I am so scared I won’t get to him fast enough. In my dreams, I chase him. He is always inches out of my reach, and my fingers brush the back of his shirt as he races ahead of me.
Then again, I know what normal looks like. I know what it’s like to cheer on the sidelines and drag a drowsy teenager out of bed and sign a report card full of A’s and B’s.
No. Definitely not. I would not change him.
The thing is, it’s too hard—too breathtaking difficult and complicated—to separate the boy from his diagnosis without losing a fundamental element of each. It is like trying to figure out which came first, the chicken or the egg.
Chicken egg boy autism ashes ashes we all fall down.
It is he and he is it and neither is wholly of the other.
Jack has a sister named Rose and three crazy brothers and a dad who would move heaven and earth to protect him and keep him safe.
We love him.
I love him.
I would miss him. I would miss his autism.
I would miss him the way someone misses a phantom limb or a hand that’s lost a finger. Deep inside of my soul I would ache, and I wouldn’t even know why.
Have you ever had a favorite movie that was only in black-and-white, and then they made a color version and when you watched it again it was like seeing it for the first time? The characters were fresh and new and the details were sharper and the story was richer.
I sing it. For Rose. It is a song. For her.
I guess what I’m saying is, I don’t want a boy with ruddy cheeks who runs down the field kicking a ball. I don’t want a boy who makes the honor roll and studies spelling words up in his room every night after dinner.
It’s too ordinary, and if you ask me, the world already has enough ordinary.
He is not ordinary. That’s the one thing you can say about Jack.
He is courage.
He is honesty.
He is the most interesting, frustrating, compelling conclusion of wonky genetics I’ve ever imagined.
He could change the world, just the way he is right this very minute. I believe this.
But in the end, it doesn’t matter what I think. It isn’t my question to answer. It’s my Jack-a-boo’s.
I read him Brian’s message. And this is what he said.
Probably. Maybe. I do not know. Do not ask. What does poof to mean.