I Want to Talk to My Son

My son Jack has autism. He is eighteen.

He was diagnosed when he was a little over a year. 

We were in a small room. The doctor was soft-spoken. Gentle. He wore a tie. 

Every once in a while, I catch a glimpse of that room in my mind’s eye.

The brown carpet. The silver filing cabinet. The doctor and his tie.

It makes me want to sing, clap thunder, lie down, sit on the ground, weep. 

He is a good son. 

I don’t tell him enough.

Sometimes this gets lost in the translation of prompts and redirection. 

In appointments and trips to the pharmacy.

It gets lost in the bell curve diagnosis.

Jack is in a college program now. He lives in a residential space with a lot of support. Academic teams, life skills coaches, staff from 7:00 am until 11:00 at night. 

It is easy to assume he became a different person since he moved there seven months ago.

Calm. Free of the anxiety that plagues every minute of every day. No looping thoughts, or handwashing, or obsessive behavior. 

The truth is, he simply packed all that up and moved it with him, the same way he packed up his t-shirts and his beloved pancake griddle. 

They follow him. That’s what I am trying say. 

He isn’t free of it. Any of it. He never will be.

Right now we are trapped in a blizzard. Autism, anxiety, and obsessive compulsive disorder have descended like a triple threat. This happens every year when the late winter storms wage their war, yet each time I to forget. 

I jump into overdrive. I meet make calls to his therapist. I talk to his doctor. We change medication. We discuss strategy. 

I just want to be his mother. 

I don’t want to manage him. I don’t want to explain him or strategize with his team or look for summer programs with therapeutic supports. 

I want to be the mother.

I want to discover him.

I want to talk to my son.

Maybe that seems like a weird thing to say.

We talk all the time.

But we never have a real conversation.

We are more like court reporters. We exchange information. We describe the weather and movies. Everything is shrouded in repetitiveness.

Then there is the anxiety. 

Please, don’t get me started on anxiety.

It is a strange, befuddled creature staring through my son’s features.

Too often, I mistook it for him.

There are many subsets to the bell curve.

For the longest time, words were the clear delineator: verbal vs. non-verbal.

From there, it became a question of high or low functioning.

Now, levels create the boxes into which we categorize. 

High functioning. By all accounts, this is where my son firmly lands.

I am grateful. Of course, I am grateful.

Yet there is a cost to high functioning. 

A cost to knowing you are different yet not knowing why. 

A cost to a longing to connect yet not knowing how.

An aching loneliness, a sense of isolation, a deep desire to have what comes easily to most—relationships, a chance at love, peer acknowledgment. 

We are in the autism blizzard right now. 

We’ve tried everything.

I thought if I could just reach inside the storm and grasp his fingers between my own, I could pull him to safety. I see now that I was wrong.

In the end, it was medication.

Because of a new medicine, my son is starting to take back some ground, despite autism’s willful, dogged determination. The cycle is not broken exactly, but for the time being, there is blissful interruption.

We aren’t done yet. We still have a long road ahead of us, trying to untangle the sticky spectrum knot inside of my son.

“Yes, Mrs. Cariello, are you calling about Jack?”

“Yes,” I say, sinking into my chair, phone in hand. “Yes, I am his mother.”

Spring is coming. 

I want to talk to my son.