One of the many things I loved about reading the submissions for Gravity was seeing a reflection of my own experience. It didn’t have to line up exactly for it to cut to my core.

I wasn’t a single mom and my son wasn’t in the school system, but Susan Segal’s second-person essay, “Sometimes, Never“, captured the urgency and black humor I felt as I scrambled to understand what was going on for my son without losing hold of myself.  The line, ‘Your boy is your religion now.’ says it perfectly.

One of your best friends works at the preschool. She’s the mother you wanted to be. She never says no to her two angels. You do it like this, she says: Instead of saying No standing on the furniture you say Feet on the floor please. Instead of saying No hitting you say It hurts when you hit. Your friend’s biggest family issue is the fact that she has no interest in sex and as a result her husband engages in various passive-aggressive behaviors like starving the dog and using the last roll of toilet paper.

I am not the mother I wanted to be, you tell her.

She says something that at first strikes you as wise and then floods you with so much guilt that you are struck dumb with failure.

She says: He is not the child you wanted him to be.

When your ex-husband comes to pick up The Baby you tell him that the director of the preschool recommended that The Baby get tested. He snorts. Tested for what? he says. The kid is four.

You nod. You have to agree. There was a time when you, too, were a rational person. When you read and approved of articles about overly medicated children and reviews of books about how modern society pathologizes boys. Now you are one of the converted. Your boy is your religion now.

You need to relax, your ex-husband says. Get in the car, already, he says crisply to The Baby and The Baby does, just like that.

You blink. I am relaxing, you say.

You call your doctor’s office. What is it regarding, the officious nurse asks.

I need to relax, you say.

Uh huh, the nurse says.

Tentatively, you say, I’m interested in medication.

What kind? she says.

Something slams into your buttocks and you wheel around. It’s The Baby’s head.

I’m hungry, he growls. I’m Chewbacca, and I want some MEAT

I’ll have to call you back, you say to the nurse.

(The essay continues in the book)

We leave the narrator in “Sometimes, Never” as she fills out assessment forms. But for many of our kids, the path to diagnosis isn’t a straight-forward one as this update from Susan shows:

By the time he was at the end of second grade, my son was on the verge of being expelled from our school district.  The only thing that saved him from that fate was, ironically enough, his diagnosis.  The obsession with a boy who had led him to the edge of a lethal cliff from which he had lifted one foot over the abyss, was deemed to have been a “manifestation” of his Asperger’s diagnosis. He was pulled back from the edge, as terrified and humbled as I was.

An irony:  He didn’t have Asperger’s.

That was the diagnosis when the terrible events of second grade occurred.  That was the diagnosis that saved him.

That was the low point.

He already had weekly OT, Social Skills, therapy with the doctor who had diagnosed him.  Days before the incident at school, the Social Skills teacher, who came to our house because she didn’t think him able to work in a group yet (and foolish me, I didn’t see this as an omen) told me she thought something was off with him.  More than usual, I said?  And she said, Yes, more than usual.

After the incident we switched therapists.  Then we switched schools.  My son was given the aide I’d been begging for since first grade (school districts get very generous when they realize they’ve dodged a major legal bullet).  The new therapist changed the diagnosis, which I knew had never fit, to PDD NOS, which, in its broad interpretation of symptoms, gathered him into its fold like a lost lamb.

Most important, my son seemed to wake up from the long dream-slash-nightmare he’d been having since the day of his birth.   He was more than remorseful about what had happened, he was devastated.

And he began to get better.

By fifth grade, he was getting his very first birthday party invitations from kids in his class.  He had become an ace baseball player.  He took up tennis and started calling the boys he played with at school by their last names.  I could drop him at a friend’s house and leave him there without anticipating disaster.

I look at him now, a pre-adolescent who has his first “girlfriend,” who plays the trumpet, and whom kids call to from across the playground to say hi, and I wonder at the mystery of it all.  Did all that intense therapy actually bring him to this place?  Or was he somehow “scared straight” by the “dark time,” as he calls it?  Or did he outgrow something?

But we know you don’t outgrow autism.  And though he now looks typical he is no longer a “typical” person with PDD NOS. He still goes to the computer every single morning to study the pro tennis standings so he can recite them to me ad nauseum later; He still thinks I can read his mind and falls apart when I indicate that I can’t; he still can’t stand to be contradicted even when he’s patently wrong. And so on and so on.

But our lives have substantially shifted – his and mine.  Last year was the first year since his infancy when I felt he was stable enough so I could go out on a date.  I went back to work on my second book in a serious way.  With the approval of the therapists, we exited Social Skills and cut back on therapy.

For so long my son was his diagnosis.  For so long I was the mother of his diagnosis.  Both of us are grateful for what we learned and are still learning because of that.  And we are moving on.

Susan Segal is the author of the novel, Aria, and numerous award-winning short stories. She is assistant professor of creative writing at the University of Southern California and an editor of Coast Magazine in Orange County, CA, where she lives with her son. She is at work on her second book, a collection of short stories.