The other day I saw a teenage boy dribbling a basketball on the sidewalk, and I felt something squeeze beneath my ribcage.
You see, he looked like was around the same age as my 17-year old son, Jack.
I can’t remember the last time Jack held a ball in his hands.
He hasn’t played on a team since he was in first grade, when we forced him to do the adaptive soccer league in town. He screamed so much we never went back for another season.
Jack has autism.
He hates sports.
He has low muscle tone.
He twitches and jumps and paces constantly.
Autism is heartache by a thousand paper cuts.
Paper cuts sting. They are a distraction. They hurt just enough to make you stop, look up from what you are doing, and wonder for a moment if it could have gone another way.
I wonder all the time.
I wonder what it would be like if he didn’t have autism and then I hate myself for wondering because autism is a gift and something to embrace and behold and celebrate.
And I do. I do embrace it.
I celebrate all the small gains and tiny steps of progress—the way he makes pancakes every Saturday and faithfully reminds me when it’s our neighbor’s birthday.
But in the middle of the beholding and the appreciating, sometimes I have a moment. And these moments can be triggered by something as simple and ordinary as the sound of a ball hitting the pavement.
There is no other way. This is the life I have been handed, and I will do my best by him.
It’s not because I am selfless or strong or good.
It’s because he deserves it.
It’s because he bites his bottom lip when he pours the batter on the griddle.
It’s because each morning before school, he checks and re-checks his backpack.
It’s because of these details—the nuances lost between the lines of a paper diagnosis—I am determined to tell our story.
Sometimes I just want to turn the heat down a little, you know? Autism can be, well, a little intense sometimes.
The truth is, there is an endless amount of work to teach Jack things that come naturally to most.
Phone skills, how to use money, the best way to stop a pot of water from boiling over on the stove.
Yet day-to-day work is simple compared to the larger backdrop of our future’.
As we sit side by side at the kitchen counter and practice saying hello into the phone, an even bigger conversation looms in my subconscious.
Employment, transportation, guardianship, health care.
This is our life alongside autism. It is done quietly, in the shadows.
We didn’t ask for it. We didn’t even want it. Yet here we are, asking and wanting.
How can I resurrect a boy from paper, without first resurrecting myself, and my truth?
What is my truth?
The truth is, I am often pierced by a loss that is not my own.
The truth is, I feel his future is in my hands, even if this is not exactly the case.
He doesn’t give up, that’s the thing.
How can I?
I know I am not alone in this.
I am not alone on this journey of light and dark—color and hope.
For the Grandpa, Pop-Pop, and Papa who set aside his beloved woodworking tools and all the names in the Thomas the Tank engine collection instead.
For the family who leaves birthday parties early, who dread barbecues and ski trips and waterslides.
For the weary couple who cannot find a way to bridge the purple silence autism created.
We are you.
To the new mother with the tender heart.
I see you.
I see you trying to keep your house neat, and keep up with all the phone calls, and keep your marriage together.
I see you, because I am you.
When the rain won’t stop, when the screams won’t quiet, when the days are too long and the nights too short, remember.
We are in this together.
Here’s to us.
We’re doing it.
Here’s to us as we watch a hero’s journey unfold—one full of small steps forward, tiny setbacks, and a wildly brave heart.
We simply want to be seen for who we are.
Messy, flawed, earnest, hopeful.
I see you.
I hear you.
I am you.
We are not alone.
Together, we stand in the shadows so our children may one day know a brilliant tangerine sun.
I love him fiercely.
You have to lower the flame. That’s what we tell him. Lower the flame so the water doesn’t boil over over the top.