The Things We Forgot

Hi.

My name is Carrie.

I have five kids.

My second son has autism. His name is Jack. He is sixteen.

My story is not a new story. It is neither original, nor untold.

My story is, quite simply, an account of a bewildered mother trying to enjoy the moment in front of her, with one eye constantly trained to the future.

Autism is a lot like sitting down for an exam. You prepared yourself for questions about philosophy, but when the teacher passes out the test, it’s all about geometry. 

You didn’t study shapes. You studied Plato and paradigms.

Your stomach seizes, and you start to sweat.

You panic.

But only you can find the answers. Only you can figure out how to fit a square boy into the round world. 

So, you look at the problem pragmatically. After all, you know what a circle is, and what a square looks like. Slowly, you begin the long process of fitting them together.

This involves many charts, and goals.  

It requires meetings, and plans, and expert opinions.

The problem is, while you fiddle around with the shapes and the charts and the goals, you might forget a few things.

I forgot a few things.

I forgot how to watch, and listen. 

I forgot how to celebrate.

I forgot how to wait. 

He learned to walk, and I wanted him to run.

He said his first word, and I wished for a sentence.

He graduated kindergarten, and I prayed he’d cross that stage again one day.

But I forgot to tell him what I was thinking. I forgot to tell him what was in my heart.

When he was in first grade, anxiety descended like a ton of bricks and he worried and we worried and he was scared of the wind and the rain and the moon, I forgot to tell him he was safe. 

When he was twelve, and puberty wreaked havoc on his body and soul and he didn’t know where be belonged anymore and every day after school he curled up in my bathtub and cried, I forgot. 

I forgot to tell him he belonged to us. He belonged to this family. 

All this time, I used goals to anchor myself when I felt like I was in over my head.

After all, smoothing the square edges is hard enough, but at least the boy is standing here, right in front of me.

The circle is harder. It contains jagged mountains, and deep, cool waters. It is full of possibility, and defeat.

It makes you forget, this circle. 

Like the smallest grain of salt within the ocean wide, my message got lost in the work.

There are days when I forget it is much harder for him than it ever was for me. 

All of it. All of it is harder for him.

When I am swimming against the deep tide, he is struggling to breathe amidst the crashing surf.

When I am stuck on geometry, he is struggling with the philosophical idea of who he is, and how he fits.

I keep forgetting to tell him it’s not his fault. 

It’s not his fault he isn’t driving a car. 

It’s not his fault he goes to a special school and rides a special bus.

It’s not his fault he has autism.

It’s not because he is stupid or lazy or less.

He is none of these things. 

He is the comma between phrases—the question mark at the end of a wandering idea.

Like a wave meeting the shore, he tries again and again, no matter how many times he’s turned away.

Hope is good.

Goals are good.

Until they are not.

Until one day, you wake up, and hope is the anchor pulling you closer and closer to the bottom of the ocean floor, while your goals mock you from dry land—maddeningly out of reach.

All while you live your life in the shadow of a diagnosis.

I don’t want it any more.

I have one chance to raise my son.

I have one chance to know my son.

I forgot to do many things when he was a little boy.

I forgot to smooth the hair from his furrowed brow, and hold his furious body against my own until his breath quieted.

I forgot to tell him he is brave.

Now I want to admire the way he is tentative, and yet the most courageous human on the planet.

I want to love him the way the sun loves the flowers and the moon lights the snow.

I want to remember he is great.

He is great.

He is greatness.

I’m in over my head. I don’t know how else to say it. 

I panic every day.

Our story is not original.

I am simply a bewildered mother, trying to enjoy the moment in front of me.

At the same time, keeping one eye trained to the sky, eternally hoping he will fly.