Dear Jack, we regret to inform you that you are not a good fit for our program at this time.
My son Jack was diagnosed with autism in 2005. He was eighteen months old.
Aside from a documentary I’d once watched, and the movie Rain Man with Dustin Hoffman, I knew nothing about autism.
I made phone call after phone call to pediatricians and specialists.
I buckled him into the car seat and drove him to centers and appointments and I watched while they evaluated his motor skills, his speech patterns, his ability to stack blocks into a tower.
He didn’t participate in pretend play. He didn’t have what they called joint attention. He failed to share observations, or interests. In other words, he never followed my gaze when I pointed to an airplane in the sky.
He kicked the blocks to the floor.
Even after all of this, we were sure he’d outgrow it.
We thought he’d learn some words and figure out this whole joint attention idea and hey, maybe blocks just weren’t his thing.
Slowly, reality crept in, like a stray cat on the back steps.
Autism is forever.
There is no cure.
Jack is seventeen now.
He didn’t outgrow it.
All at once, he looks like a young man. The baby fat has melted from his face, and his frame is long and lean.
I catch a glimpse of him out of the corner of my eye, and my breath catches.
When it comes to autism, it’s easy to forget about the teenagers.
It’s easy to forget that the boys who kicked the blocks to the floor will one day experience puberty.
It’s easy to forget that whether it’s education or the workforce, they too deserve a seat at the proverbial table.
I get it.
The truth is, they aren’t cute anymore.
Their meltdowns are louder.
They are disruptive.
Words like depression, self-harm, and anxiety often layer atop the original diagnosis.
At this point, Jack hasn’t met many of the milestones associated with adolescence.
He doesn’t drive a car. He didn’t take the SAT’s or go the prom.
We’re on autism’s timeline now.
I’m tired of it. I’m tired of the pit in my stomach all the time. I’m tired of looking to the future with a mixture of dread, fear, despair, and hope.
I want to be better. I am trying to be better.
It’s like I have this whole other world inside of me and I am ashamed and sad and I get tired of picking myself up and starting over again.
But that’s what do. This is the cycle in which I am trapped.
This boy of mine, he is like a box full of stars.
He closes himself off, he hides.
Yet when we open the lid, he lights up the very air around him.
Autism grief is a heartache all its own.
It is a tally sheet of loss and gains—an ongoing internal voice telling me where he is, and where he should be.
It is a letter in the mail—another opportunity lost in the name of a diagnosis.
It is all the not-knowing: not-knowing the future. Not-knowing the outcome. Not-knowing how to tell my tall, tender boy about the latest rejection.
I don’t want to think about what he might not do. I want to be curious about all the things he might do. I want to come from a place of discovery, instead of panic.
I’m just not sure how.
In a culture that celebrates ego, status, money, degrees, careers, yet my son longs for none of it.
What he wants is so much simpler.
Dinner all together at night.
Ice cream in his favorite bowl.
He wants to walk to the store and use his debit card to buy microwave popcorn with extra butter.
He wants to manage paper towels on Amazon Subscribe & Save and organize the batteries in the special battery-holder we hung on the basement wall.
We should all be so lucky, shouldn’t we?
We should all be so lucky to enjoy the sweet taste of ice cream at the end of a long day.
These autism teenagers, they can teach us something.
They can teach us how to be authentically real, and how to turn despair into discovery.
My son is growing up. And he deserves the chance to blossom.
If I have to, I’ll build the table myself.
For Mom. We have two more programs. To try.