We began as enemies.
It was November 2005. I was standing with my little boy Jack in a parking garage. He was eighteen months old and the words from the doctor were still ringing in my ears.
Mrs. Cariello, I believe your son here has Autism Spectrum Disorder.
You are the panther who demands melatonin for six hours of sleep at night.
You are the cruel snake of anxiety, winding and curling around my child’s soul.
You are the box on a form, a bad day at school, marital discord, and a mother’s uncertainty.
I hate you.
That’s right, I said it. Autism, I hate you.
I hate how lonely you make him.
I hate the way he painstakingly searches for words while the rest of the world rushes over him—a tidal wave of jokes and irony and dialogue and language.
I hate that his brain is always turning, churning, obsessing, racing from maps to music to when Smucker’s first made strawberry jam. I want to scream at you to leave my son alone. Let him rest for a moment.
Please, let him rest.
He doesn’t even like strawberry jam.
I hate the way you make me feel. With you around, I am stupid and tired and useless.
In the beginning I suppose I wanted the same things for him as everyone else. I wanted a report card with more A’s than C’s. I wanted soccer games on Saturday mornings and a shiny black tux for the prom.
Over time, I learned to want different things: a small smile, a day without a phone call from school, an easy evening.
That little boy Jack from the parking lot is nearly eighteen now. In two days, we will stand in a courtroom and, according to New Hampshire family law, apply for guardianship.
Jack will sit at one table with his state appointment lawyer, while my husband and I sit at another.
How did it come to this?
This is your fault.
Or is it?
One moment I believe this is true. The next doubt creeps in like a stray cat on the back steps.
Did we do enough?
He does his own laundry. He can use the grill to make cheeseburgers.
But he gives out too much personal information. He thinks cars cost $500.
He is naïve.
He is clever.
He is earnest.
But he swears a lot.
His body resembles that of a man, while his spirit delights in the online app for Pizza Hut.
I want to tell you a secret.
I know you think you keep all the secrets, but I also have one: every once in a great while, when I’m frustrated and lost, I go up into our bedroom and I cry.
I sit in the chair by the window. I cry for the boy who wants to live alone but may not, who wants to drive a car to the grocery store for ice cream but can’t, and who wants a purple velvet cake for his 18th birthday.
I cry for the boy who might have been.
I cry for the way he holds onto the hem of life’s kite and watches the clouds race overhead.
He wishes for buoyancy and flight, while you keep both of his feet planted firmly on the ground.
You see, in a culture obsessed with trophies, Ivy Leagues, ego, status, and wealth, and you have robbed him of his currency.
We began as enemies, in a cold November parking lot.
What are we now? I don’t think there is a term for it, to be honest.
You are less enemy, but not friend.
For all the things you make him—rigid and bossy and lonely and sad—you also make him funny and lovable and charming and smart. In some absurd way, you make him whole. To love him is to love you, too.
You are perspective.
You are a million little papercuts throughout the daily business of life—the small heartbreaks that accompany a complicated child.
You robbed him of his currency.
Or did you?
Did you simply alter the exchange? Did you simply open our eyes to a life full of things that which truly matters?
A bittersweet season is upon us.
As I wrestle with the cold process of guardianship and all it may mean, I am coming to terms with a novel kind of independence: college.
In a few short months this boy Jack will pack up his things and move into a residential space. It is geared for kids like him—kids who require structure and scaffolding to do what comes easily for most.
I don’t know how to let him go.
Can we loosen our grip—mine maternal, yours diagnostic—and let him fly?
We began as enemies.
I don’t know what to call us now.
Once in a while I cry for the boy who might have been, it’s true. But every single day I smile for the boy who is. I smile for what is possible.
For Mom. I think I want to take a class. In broadcasting.