My name is Carrie.
My son Jack has autism. He is almost seventeen.
About five years ago, Jack fell apart. I don’t know how else to describe it.
It was springtime, which in New Hampshire is little more than an extension of winter. Crusty snow lingered on the ground, and the mornings were cloudy and cool.
Inside our house, we were caught in the middle of autism’s cold, harsh blizzard.
Looking back, I can’t quite pinpoint when it started. It was sort of a slow erosion, where every day he became more agitated than the last.
He stopped sleeping through the night.
He bit his fingernails until they bled.
He talked about knives, and death, and hurt, and fear.
My 12-year old boy would trace his fingers over the handles in the drawer. At night, after he finally fell into a fitful sleep, we hid the sharp utensils high up on a shelf.
I am not telling you this because I am brave.
I am telling you because I am sad.
I am telling you this because I think back and remember my son who was terrified and alone and I feel an ache deep inside myself.
I didn’t know how to help him.
I didn’t know how to alleviate his fear or keep him safe.
Every afternoon he’d come home from school and curl up in my bathtub fully clothed, hugging his knees to his chest.
Then, like a wind-up toy, he’d pull himself out of his porcelain cave and begin raging.
He would rage about school and scream about dinner and chant no! over and over again.
And I’d snap back that he had to go to school it is the law and knives are dangerous and he needed to calm down already.
These are the words that came out of my actual mouth, day after day.
He was stuck inside this brutal winter storm, and I didn’t help him.
I left him alone in it.
Why? I ask myself now, five years later.
Why didn’t I fold him into my arms or, when he resisted my touch, kneel before him and gently wipe his furious tears?
When it comes to autism, there are things people don’t like to talk about.
But then there’s the deep depression, the suicidal thoughts, the aggression.
I thought we were broken.
As hard as I tried, I could not pull him through the snowstorm of autism and puberty and mental anguish.
Jack is in high school now. He is finding his way. It has been a long, slow process.
We tried different medications. We moved him to a different school. We met with countless people to get advice about why it all fell apart so quickly.
We learned. And like a caterpillar in a cocoon, my boy began to blossom in all of his colorful glory.
The other day, he let me take his picture. Looking at it later, it took my breath away.
I mean, what was so different about this one photo? He’s sat on that seat in my office dozens of times and let me snap him with the camera on my phone.
You can’t see his autism.
I know, autism doesn’t have a specific look. But have a hard time gazing at Jack without it staring it back at me.
It’s the way he twitches his fingers, and picks at his ear.
And how he checks his watch 3,429 times an hour, and cleans his glasses every few minutes.
It’s the apprehension in his eyes, and the worry in his brow.
Looking at this picture, well, it was different. Autism cleared out of the way for once. It didn’t hog the spotlight, or demand my attention.
It was like seeing my son for the very first time.
I see his easy smile and I thought, okay, maybe the worst is behind us now.
Because for the last five years, I have been holding my breath. This is my truth.
I have been holding my breath while a pit of worry vibrated beneath my ribcage.
What if the storm returned again?
It might. It could. Sure, we switched to a smaller school and we seem to have the right medication to help him sleep and soothe his spirit and now we have strategies for the rage, but who knows?
I can never fully relax.
After all, I am an Autism Mama. We tread lightly, even in moments of humble peace.
Literature describes the hero’s journey as a lively adventure filled with lessons, triumphant victory, and an eventual return home.
It calls to mind young men in capes, scaling limestone walls and conquering known enemies.
I have yet to find a narrative that mentions a teenage boy diagnosed with an incurable condition who wakes up every single day, opens the front door, and charges bravely into the world.
Who is the enemy here?
Perhaps it’s depression.
Or a combination of puberty and panic.
Yet he is finding his way. Out of the sharpness and the blades, there are tender mercies.
The occasional smile, a pleasant afternoon, a brief sense of ease.
We were broken.
But in five short/long years, we have started to heal.
I don’t always know the right thing to do. I have failed, and tried, and failed again.
But I am trying.
He is trying.
We are trying.
Sometimes, this has to be enough.
He will never be fully free of autism.
But perhaps he will prevail, this hero child of mine.
I love him with my fiercest heart.