When it comes to my son Jack, I fill out a lot of paperwork–forms, surveys, and questionnaires. I check boxes, and rate things like behavior, and anxiety, and temperament.
Usually I leave the papers on the corner of my desk until the last possible second. I mean, I hate paperwork to begin with, and I especially hate paperwork where there is a rating scale involved.
On a scale of 1-10, how would you describe your child’s ability to ride a unicycle while balancing a grapefruit in his left hand?
Just kidding. Usually they read more like this:
On a scale of 1-10, how would you describe your child’s ability to follow directions involving two or more steps?
These kinds of questions stump me.
I mean, Jack can follow a recipe pretty easily but he has to keep checking and re-checking the measurements. He reads it over between every step. This is because he has very little working memory. He can’t hold onto information and use it at the same time.
Is this a three on the scale? Or maybe a five?
On a scale of 1-10, how would you rate your child’s ability to create meaningful social connections?
Well, he has no friends. And he doesn’t seem to want friends. So I guess that would make it a one.
Yet, he loves his grandparents, and his cousins.
And when we go to the grocery store he squints and frowns at the shelf with the granola bars, until he finds the ones his father eats for breakfast. So maybe that bumps him up to a six?
There’s often an empty box at the bottom of the paperwork, inviting me to describe him in my own words. As if the rating system wasn’t complicated enough, now I have to fit my son into a small paper space.
It’s easy to describe his physical features.
He is very tall. He has big feet, and he wears glasses.
He has dark brown hair and every morning he carefully parts it to one side.
I can usually explain what he likes, and dislikes.
He likes milkshakes.
He dislikes yogurt.
He likes handshakes.
He dislikes hugs.
Then there are his peculiar, ordinary habits.
He’s up by 6:00 am . He rides the Peloton, and then he toasts waffles for breakfast.
He carries wipes for his glasses in his pocket—up to ten little squares of cloth wrapped in plastic. At least once an hour, he unwraps one, and sniffs at it. Then he carefully takes off his glasses, and wipes down each lens.
There is an earnestness to him words can’t quite illustrate.
He tries, all the time.
He tries to do the right thing and even though he swears a lot, he is good. He is a good person.
At the end of the day, he is exhausted. He comes home from school and he helps me with dinner and by the time we finish watching an episode of The Goldbergs, he has nothing left. He has given all of his words and his energy and his time and his space. We have learned not to push him, or ask too much.
He hardly ever smiles, or laughs.
You might think I’m exaggerating when I say this about the smiling and the laugher, but I’m not. The last time I heard him laugh a deep laugh was probably August 2019. We were in the car together, and a song came on the radio. I started to sing it in a loud, silly voice, and he laughed.
My boy laughed, and my heart soared.
How can I describe him?
Describing my son and his autism like trying to describe the wind, or my own hand. It is at once familiar, yet hard to capture.
He is the most persistent person I have ever met.
He is a problem-solver.
He meticulously plans his entire life—meals, television shows, taking out the garbage.
He rehashes and repeats and revises, until I think I can’t take one more second talking about our Thanksgiving meal.
And now, COVID has stolen everything he loves. Holidays, family parties, trips to the movie theater.
Still, he plans.
He adjusts, and readjusts, and adapts.
This requires much discussion and many lists and lots of talking. Also, did I mention the discussion?
But then I remember, tucked inside the planning and the preparations like a tiny seed, is a battle cry of sorts. It is his attempt to rally. He is trying to create shape and order, even as the landscape shifts between his feet.
This is good. It is good, and important, and it does not fit inside a box at the bottom of a form.
I long to protect him.
One time I had a dream that he was carrying a pizza and a bunch of men tried to take it from him. In my dream I tried to call out—to tell them to stop and get away from my son—except no words came out.
He is so much more than autism. Can you see this? I hope you see this.
He is fear, and earnestness, and surprise all mixed up together.
He can make me laugh and cry in the same exact moment.
This is good.
It is important.
He is hard to describe.
Maybe he is all of us. You, and also me.
I don’t fit in a box.
I love him fiercely.
This year for Thanksgiving. Let’s make. Macaroni and cheese. For something new.