When our son Jack was diagnosed with autism, my husband Joe and I thought it would—in our own words—blow over at some point.
He was a toddler. He had light brown hair and a grin full of mischief.
He ran from me every chance he got—through grocery stores and malls and parking lots and the library in the center of town.
Jack is seventeen now.
His hair has darkened over time, and he likes it very short.
He wears glasses. He rubs his hands together like he’s at a campfire.
He loves cheese enchiladas and burgers with no pickle.
He doesn’t grin like he once did.
In the space between toddler and adolescence, his smile disappeared altogether. I don’t know exactly when this happened. I guess slowly eroded.
You might say autism hasn’t blown over yet.
And now I know. It never will.
Autism doesn’t end after lots of speech therapy, or long evenings at the dinner table, or many sleepless nights.
It won’t end after high school.
It won’t end when it’s time to find a job, or a place to live, or figure out healthcare.
It is a game of push-pull, progress versus joy, boy versus diagnosis, hope in the darkness, cheese enchiladas, part wild-child, part lonely chase.
At the same time, it isn’t a game at all.
I wasn’t prepared for this.
I’m not cut out for it.
I don’t have what it takes.
Please, don’t reassure me. Just let me make my confession. Let me say the words.
My son Jack begins every day asking about the basics.
What will we do?
Where will we go?
When will we eat?
In my lowest, saddest, shameful moments I want to snap at him and demand to know when, when, haven’t I met his needs?
Then I remember.
He has needs I can’t begin to understand.
Some days, I feel like I am holding his future in the palm of my hands.
And one wrong move—if I forget to remind him to say please when he orders his chicken tenders or tell him again to look both ways before crossing the street—it will all fall apart.
It would be easy to let it all go.
It would be easy to write him off in the name of a diagnosis, to change my mind when things get hard or his anxiety kicks up or he doesn’t want to go to his summer program.
I could shrug and say, well, he has autism, what can you do? Maybe next year.
But I can’t.
I can’t give in or change my mind or stop pushing him when it becomes uncomfortable.
I can’t because since he was a brown-haired toddler he’s had this spark. It is a flicker of determination I can’t quite describe. But it’s always been there.
At some point, I made an unconscious decision to protect this small flame—to shield it from the wind and the judgement, and give it light and air.
This means I can’t change my mind.
I can’t do what’s easy.
There is no next year. There is only now.
It doesn’t end. Autism doesn’t end when senior year is over, or the hormones of puberty finally settle down, or manhood begins.
In less than a year, we will stand before a judge.
We will stand in court and ask this boy named Jack to relinquish everything he longs for—independence and freedom and choices and sovereignty.
I don’t know what I pictured, but I can tell you I never pictured this.
Could you do it?
I want to know.
I want to know because I have to do it, but I don’t know how.
Tell me how.
My son Jack is good and right and whole.
He is not broken.
I will never change my mind about him.
I can’t quite see the end.
Maybe there is no end.
Maybe there is a beginning and somewhat of a middle and mostly a sparkling magic slippery riddle in the shape of a boy.
I chase his smile the way the sun chases the moon at dawn.
I can’t help but think that maybe, just maybe, with enough light and breath and air, his flame could become fire.
And he’ll set the world alight.