My son Jack is diagnosed with Autism Spectrum Disorder. He is sixteen.
Jack’s had autism for his whole entire life. I believe he’ll have it forever.
I have lived alongside autism for sixteen years now. For the most part, I’d say I have made peace with it.
Yet lately, I have moments when I am overcome with a deep sadness.
It can happen almost anywhere, without warning.
I might be walking through the grocery store, filling my cart with the things he loves—crackers and noodle soup—and I’ll think about how badly he wanted to come with me, but I slid out the door while he wasn’t looking.
I reach for his favorite kind of cheese, and my heart sinks.
I mean, why didn’t I bring him with me? He loves the grocery store.
But he doesn’t understand how to socially distance and he hops all over and darts through the aisles and I chase and chase him.
I get tired of the chasing.
The other day I was on the treadmill listening to my favorite music and I pictured Jack at home, waiting for me, checking the clock and worrying about when he could start baking banana bread and my heart squeezed tight.
I hurt for him.
I think it’s his earnestness—the way he accepts what he has, and who he is, and tries his hardest to make the best of it all.
Every day, he wakes up, and without words, he basically says, listen, this is who I am. This is who I am meant to be, and I cannot change all the way for you.
He has this core—this strong sense of himself—and I can’t help but admire it.
I mean, all day long the world tells him to jump less, and listen more.
We tell him to look, and talk, and watch, and understand.
And this boy Jack, well, he plays by our rules. He finds his words and he glances up long enough to meet our eyes. He pretends to understand our silly ways.
He a fighter.
My child has autism.
It is the lens through which I see everything in my life.
Movies, television shows, music.
Childhood memories, advertising, medical forms, traffic patterns.
The truth is, it isn’t autism that’s holding him back.
I mean, in some ways it is.
He tends to, uh, exhaust people with his questions and he blurts out whatever’s in his head at the moment, and if he doesn’t feel like talking anymore, he simply turns around, and walks away.
But in the long run, anxiety is the problem.
Anxiety is difficult to describe. It doesn’t fit on a page, or in a conversation.
It should be easy, right?
Let’s say your child is scared of the fire drill/spiders/the wind.
So, you soothe him. You smooth his hair, and reassure him he is safe.
Except anxiety rejects the soothing and smoothing. It is prickly, and annoying, and unlikable.
Anxiety manifests in many ways.
Rage, fear, loneliness.
It is a cage that holds him.
And he carries this cage wherever he goes.
Still, we make the best of it.
Hope is a lot like carrying a bag full of rocks while you climb uphill. I shift it from my hip to my back, but I can’t get comfortable. So I focus on the mountain. I put one foot in front of the other, and I move.
At first, I thought I was the only one carrying this bag. I assumed I was shouldering all the weight.
One day I looked around, and I noticed others carrying something similar.
Teachers, bus drivers, paraprofessionals.
Grandma, and Grandpa. Aunts, uncles, cousins. Three brothers, and a sister.
A sister. This sister, oh, how she hopes. She wears her hope like a bright, colorful sweater. It keeps her cozy on cold days. At the same time, the colors tell others to stand back, and watch for him.
Behind the sister stands a father.
There is no one is in this world like an Autism Father. At first, he appears formidable, and tough. But when you get the chance to talk to him, you see the sadness and hope all mixed up in his dark brown eyes.
We are a fleet of hopers, our eyes trained to the sky while our hearts remain fixed on a boy named Jack.
And this boy Jack, he wears his bravery on the outside, and holds his hope deep inside his ribcage. Still. I know. I know his burden is heavier than all of ours combined.
At the same time, he accepts who he is, and what he has. Yet still, he reaches for more.
He is a fighter.
He never gets tired of chasing.
Perhaps this is his peace.
He makes the best banana bread you’ve ever tasted. His secret is lots of chocolate chips.
He is my child.
I would do anything to free him from this cage.