My son Jack has autism. He is thirteen.
Every day he comes in contact with a variety of people who don’t understand the way he thinks, feels, speaks, or moves. I have no idea what this is like for him.
And yet, I am guilty of it also—guilty of always trying to show him a better way to communicate, or behave, or learn.
It is a tender balance, this autism thing. On one hand, I need to ready him for the world as best I can. I need to teach, and to explain, and to social-story my stupid head right off my body.
At the same time, this little thing called acceptance dangles precariously before my eyes. Is it possible to teach and still accept him as he is? Can I nudge him in the direction of typical, and still respect the limits of his diagnosis?
I do not know. I may never know.
Jack is talking to himself a lot lately. I hear him carrying on full conversations upstairs in his room, or down the hall, or at the dinner table. It’s like living with a ghost.
This means his anxiety is spiking. It means he is disconnecting from us and burrowing down into autism’s deep waters, where it feels cozy and warm, and the colors and sounds of everyday life are muted, and soft.
If I’m in a good mood when I hear him, I think this: well, we’ve been here before, this is how the spectrum works, it ebbs and it flows.
If I’m the least bit cranky when I hear him, because I’m tired or I’m frustrated or I’m scared, I think: I will never be free of this. And neither will he.
Sure, we’ve done this before. We’ve gone to the doctor and altered his medication and introduced new therapies. We’ve worked on breathing techniques and tried to get him more exercise. And we’ll do that again this time. In the meantime, I’m trying to picture what life looks like for Jack beyond his fishbowl.
Because right now, I only have one job. My job is to take both his hands in mine, pull him from the depths of his ocean, and into the light.
My Jack-a-boo, where did you go? Who are you talking to? What are you thinking?
I miss you.
Do you remember the wooden puzzle we had when you were a little guy? It was made up of shapes that were all different colors and had plastic pegs on top. Hand over hand, I would guide your chubby fingers to grip the peg, and fit the pieces together. Sometimes you would try to shove the square piece into the round hole, or the triangle into the spot where the oval went.
I remember the oval was green.
Since you were an infant, we have asked you to be someone you are not.
We wanted you to sleep on our timetable.
We couldn’t understand why you spit out all the mashed bananas.
We got frustrated when you cried.
As you got older, we asked more from you. We said, come, little boy. Take this piece of paper and write your name. No, no, don’t hold the pencil that way, hold it this way. This is how we hold a pencil in school.
Sit still at your desk. See the other kids? They aren’t fidgeting and flapping like they want to crawl right out of their skin.
Kick the ball this way.
Stand in line that way.
How dare you scream and cover your ears because the lights are too bright or the music is too loud?
How dare you sit all alone on the playground because you feel confused, and overwhelmed?
How dare you be who you are?
Be like us. We are better than you. We are whole. We are right.
We told you to be quiet in church, because church is not a place to jump around like we have ants in our pants. We do not make noise during Mass. We feel God one way only and it is not your way.
It is never your way, is it, Jack-a-boo?
At dinner we ask you to please stop pushing your food around the plate. After all, it’s a meatball! Who doesn’t love a meatball? Everyone loves meatballs. Try it try one little bite just a small bite stop crying try the meatball or no ice cream you just need to try a bite and then I know you will love it.
Be who we expect you to be. Stop being you.
Honestly, why are you so afraid of everything all the time? Why are you so scared of the wind and loud noises and the color orange? It’s not normal.
Be more normal. Please, we need you to be normal.
And listen, when someone hits the ball to you, you catch it. See! You put your hand out in your glove and you grab the ball out of the air. No, no, not like that! Watch for the ball! Watch it come to you!
What do you mean, you don’t like baseball? Everyone likes baseball!
Be like us. Be like everyone else.
Talk like we do, and move like we do. Love God the way we do, catch the ball like we do.
Oh, Jack. When I think about all the messages we’ve sent over the years—all the subtle innuendos about your place in this world, well, it’s no wonder you’d rather talk to yourself all day. I’m sorry.
I hope one day, you’ll forgive me. You see, I only get one chance to be your mother. I am trying to do everything right. I am scared. I am lonely. I listen to people say they would never medicate their child and then I watch you wash down pills every night and I think, what in fresh hell am I doing?
The thing is, you may never fit like the green oval. And that is perfectly okay. That is perfectly right. You are right.
One day, the world will stop thinking in terms of shapes, and colors, and disorders. Until then, both of us will have to continue swimming against the tide.
In the meantime, talk to me. Please, talk to me. Tell me everything, my funny, complicated, misunderstood little fish.
Hold my hands in yours, so I might lift you to the surface.
In a world of no, speak your very own yes.
Take up space.
“Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.” –Albert Einstein