His Gilded Cage

It’s late autumn in New Hampshire right now.

The leaves are alive with color, but slowly, over the coming weeks, they will drift to the earth’s floor, and the trees will stand bare and empty. 

It’s late autumn, yet all I can think about is a green and tender May.

You see, my son Jack is a senior in high school. And come spring, he’ll graduate from high school.

Then what? Where will he go? What will he do?

I can’t see how the end might look.

Jack has autism.

Every year we have to sit through a meeting to confirm this fact, in order to continue services.

So I listen to words like spectrum disorder and developmentally delayed and I nod my head.

I nod my head, but inside I wilt a little. 

I remind myself it is not who he is, it is what he has. 

Then there’s the paperwork.

I hate paperwork in general, but I especially hate autism paperwork.

Autism paperwork has big long lists that require me to rate Jack’s behavior on a scale of one to ten, or even worse, the dreaded never, rarely, sometimes, always ranking.

Does your child exhibit signs of social anxiety?

Dutifully, I check the boxes and sign my name.

Beneath my signature is the spot to write my relationship to him.

I write, simply, mother.

Yet there is nothing simple about it.

I am not just the mother.

I am tear-wiper, word-coaxer, meltdown-soother, appointment-maker.

I have spent nearly eighteen years figuring out when to push, and when to pull.

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 long to live in the moment but I can’t, because autism demands I stay one step ahead, even on the days I lag far behind.

Some days, I feel like I am holding it in the palm of my hands. 

And one wrong move—if I forget to remind him to say please when he orders his chicken tenders or tell him again to look both ways before crossing the street—it will fall apart.

It would be easy to let it all go. 

It would be easy to write him off in the name of a diagnosis, to change my mind when things get hard or his anxiety kicks up or he doesn’t want to leave his room. 

I could shrug and say, well, he has autism, what can you do? Maybe next year.

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 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 can’t do what’s easy. 

There is no next year. There is only now. 

It doesn’t end. Autism doesn’t end when senior year is over, or the hormones of puberty finally settle down, or adulthood begins.

In less than a year, 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.

I don’t know what I pictured, but I can tell you I never pictured this. 

It’s not who he is, it’s what he has. 

I never wanted to reduce his childhood to forms and progress and checklists and balance sheets. 

But I’m afraid I did.

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. 

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.

I can’t help but think that, with enough light and breath and air, his flame could become fire.

And he’ll set the world alight.

For now, I look between the lines—at the small big things strung together like lights along a rocky path.

Golden leaves upon the trees, the sweetest bite of chocolate, and a rare easy smile.  

My second child, my Sunday son, my rule-breaker, my game-changer.