A Little Room to Breathe

I have to be honest. There were times I tried to contain it, but containing autism is a little like trying to hold a flame between your fingers, or a tornado inside of a bucket.

It doesn’t work.

It burns.

The bucket topples over and you are left with a lot of lightning and wind.

You can’t hide autism. It is ridiculous to think otherwise.

I will not hide you.

I will not hide the jumping or the anxiety or the medicine.

I will not hide who you are or what you have.

I made this decision a long time ago, Jack-a-boo.

These things are you, and they are not you.

I would say this year has been rich with small milestones, complicated progress, and a whole lot of determination.

In other words, things are a little better. There is a little room to breathe.

You have a job.

You ate shrimp.

You laughed more than once, and smiles a few times, and even threw your arm around my shoulders in a spontaneous display of affection.

Feeling your arm around me, well, it was like meeting you for the first time.

Lately I catch myself thinking about your first day of kindergarten, and the first time you ate a banana, and the first time you smiled.

It was summertime, when you ate the banana. I was sitting on the floor and you walked over to me and you held out your hand. I broke off a piece and gave it to you.

Listen, I’m not going to lie. There have been days and weeks when I saw the diagnosis before I saw you.

Not even the diagnosis, but the symptoms—the way you jump to calm your body, the way you grunt and clear your throat, and how you recite lines from movies on repeat.

The sign for autism is a puzzle piece.

You are a puzzle. You will always be a puzzle.

Puzzles are good. 

For years I have been trying to fit you together with my expectations of who you should be, and I always come up short.

An infant who never slept.

A toddler who never spoke.

A 12-year old who could not stay in public school.

The thing is, I never considered the fire within you.

Lately, things are better. You are calmer. We’ve landed on the perfect combination of medication to help you sleep and stay focused and tame the wily beast of anxiety.

I’m not saying you’re cured, because I don’t believe there is a cure. I used to care about that but now I don’t care so much.

You’ll never be cured of autism, Jack-a-boo. You will have it forever and always.

I don’t regret it.

Do you?

Since you were diagnosed fifteen years ago, autism has been a trifecta of hope, grief, and peace.

Hope is the bundle of rocks I carry with me everywhere I go. They are heavy. I shift them from my back to my hip.

Grief is a little box of feathers I keep upstairs in my drawer. Every once in a while, when I am alone, I open it. I watch the feathers float around the room and I think about the boy you could have been—a boy who plays sports and makes easy friends and laughs out loud at least once a week—and then I close it. I close the box. I close it because it doesn’t really matter anymore.

And peace? Well, peace is a little like climbing a long, jagged mountain with the bag of rocks strapped to my back. I clutch my box of feathers underneath my arm. I am sweating, and shaking. I am tired. But every so often I look up to the top of the peak, and I see a quiet place. From where I stand, the grass looks soft. The sun is a gentle yellow.

I long to sit there, on the top of the mountain in the soft green grass. I want to close my eyes and feel the warmth on my face.

Peace.

For fifteen years I have held these three things close to my heart. I have nursed my wounds and chased the feathers and ached for peace.

For fifteen years, I have watched you make tentative progress, and then stand very still.

I have tried, and worked and pushed. At times, I have yelled. Yet I loved you always.

Do you know that? Do you know how much I loved you even when I got so frustrated and made a mean face and held my head in my hands?

Lately, things are better.

I am beginning to see there is a fourth side to the spectrum prism.

Possibility.

Possibility is a light. It shines so bright. It illuminates the rocks and it makes the feathers glow and it beacons a path up the mountain.

Who can you be?

Who will you be?

You, my son, are possible.

It’s true, we are not at the top of the mountain just yet. Together, you and I will continue to climb. But every once in a while, I see the yellow sunshine out of the corner of my eye. I feel the soft grass beneath my fingertips.

I see you, my son.

Autism is a lot of things. It’s a dance in the dark and poetry in motion and a long, uphill climb.

It is you, and yet it is not you.

For now, it is better.