I have a son with autism. His name is Jack. He is seventeen.
Every morning, I make Jack’s bed.
I pull the sheets up tight. I smooth the blue plaid quilt and stack the pillows.
I do it even though he is perfectly capable of doing it himself.
I’m not even sure he notices, to be honest.
I do it anyway.
I do it because life alongside autism is a complicated journey, and these two minutes in his room, well, they are a moment to catch my breath.
I try not to think too much while I straighten his covers, but I’m not always successful at quieting my brain.
In four months, 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.
We meet with lawyers, and talk about things like guardianship and power of attorney.
I nod my head, but inside I wilt a little.
I remind myself autism is not who he is, it is what he has.
I have spent nearly eighteen years figuring out when to push, and when to pull, and for as long as I can remember, I have chased.
I have chased him through the mall and in the parking lot and down the driveway.
I chase progress like the wind chases static air.
I chase his smile the way the sun chases the moon at dawn.
I chase the future.
I chase the future even as I desperately wish to live in the moment. You see, autism demands I stay one step ahead, even when I lag far behind.
Some days, I feel like I am holding it all in the palm of my hands.
And one wrong move—if I forget to remind him to say please when he orders his cheeseburger or tell him again to look both ways before crossing the street—it will fall apart.
I make his bed. Morning after morning, I return to this simple task
For two minutes out of my day, I don’t have to be an advocate, or an autism-explainer, or a social-story-teller.
I’m just a mom, folding a blanket.
I think a lot about how it would be easy to give up, and let it all go.
But I can’t.
I can’t give in or change my mind or stop pushing him when it becomes uncomfortable.
I can’t let him stay inside his gilded cage like a rare, exotic bird.
I can’t do what’s easy.
I can’t because since he was a brown-haired toddler he’s had a spark—this tiny flicker of determination.
At some point, I made an unconscious decision to protect the flame—to shield it from the wind and the judgement, and give it light and air.
I make his bed.
Perhaps it is in lieu of what I long to do most—fold him into a big bear hug, or kiss his cheek, or run my fingers through his soft brown hair.
He would hate every single one of those things.
You see, I have a child who rejects my touch. It took a long time for me to figure out how I feel about this.
We’re in the end game now, as this son of mine perches upon the precipice of manhood.
I wish I could do it over again.
I would change so much.
I would hold his angry body against mine.
I would have pushed, yes, but celebrated more.
This is a mother’s heart—filled to the brim with deep regret, salty tears, and a special kind of fierceness.
Every morning, I make his bed. It is the one thing I can give him, in this life of push-pull, progress and goals.
Maybe there is no end.
Maybe there is a beginning and somewhat of a middle and a mostly sparkling magic slippery riddle in the shape of a boy.
My second child, my Sunday son, my rule-breaker, my game-changer.
I believe in him. I believe in him the way the purple moon believes in the orange morning sunrise.
I can’t help but think that, with enough light and breath and air, his flame could become fire, and in his very own way, he’ll set the world alight.
Autism is not who he is, it is what he has.