Loving a Thief

Hi. My name is Carrie. I have five kids, and my second son has autism.

His name is Jack. He is almost seventeen years old.

April is Autism Awareness Month.

As a kid I played a game with my friends, where we’d repeat the same word over and over again until they turned meaningless on our tongues.

aaware aware aware

When Jack was in third grade, he would lock himself in the bathroom at 4:00 every single afternoon and have the most horrific bowel movements I’d ever seen. He would take all of his clothes off and moan and wail. Then he would run all over the house and leave footprints on the floor and splotchy handprints on the walls.

Every afternoon at exactly 3:58, I imagined opening our front door, walking outside, and never coming back again.

Does this story make you more aware of autism?

aware, beware, nightmare.

Autism and I, well, we have a tricky relationship.

I want to hate it, but I can’t.

I have to love it because autism is my boy, and my boy is autism.

At the same time, it has stolen so much of what is rightfully his. 

Maybe it would help to know that since my son was first diagnosed, I’ve wanted a crystal ball to see into the future. I wanted to know how it would all turn out—would he take a date to the prom or play baseball for the school team?

It turns out, he would do neither.

If I told you my grief is random, and harsh, and raw, would you understand autism?

Would you understand the way heartache washes over me when I see a teenager Jack’s age riding around town, or bouncing a basketball nonchalantly on the sidewalk?

Would you believe me when I say that autism is heartbreak by one thousand paper cuts?

It is, you know.

We’ve started to talk to him about the idea of guardianship, and how next year when he turns eighteen we will stand in front of a judge and sign paperwork so we can manage his finances and his medication and living arrangements.  

The truth is, this might break him. It might break everything he ever thought he could do, or be.

aware, impair, unfair

Whenever I considered this crystal ball, I never once gazed inside the globe and imagined a judge, or paperwork, or shared bank accounts. 

I am forever racing against an imaginary clock.

Where will he live?

With us?

In a group home?

In a small apartment we rent nearby?

I have to take care of him forever.

I have to make sure he has a warm coat for winter and enough milk to last the week and money in whatever account we set up for him.

Most of all, I have to take care of his heart.

If I told you that I have to love the thief who stole my son’s independence, would you understand autism a little more?

If I explained I belong to a secret tribe of people who often feel invisible, and alone, would you know? Would you recognize us?

You see, autism is a road no one would choose, and yet there are many footprints on the uneven path.

And high or low or nestled somewhere in between, we all want the same things for the complicated people in our lives.

We want them to know happiness.

We want them to know love and hope and forgiveness and joy.

We want them to stay safe.

Most of all, we want them to live the life they wish for themselves.

We make appointments for speech and OT and the neurologist.

We change soaked sheets in the middle of the night or wipe down the walls in the late afternoon.

We are trying to hold onto our marriage, and ourselves.

Do not erase us. 

See us.

Hear us.

We are the front line and the middle march and the final frontier.

We are tired and scared.

Yet even on the bleakest days, our hearts can soar with pride. 

And we want to tell you about it all. 

We want to tell you about the bank accounts and the late afternoon panic and the imaginary clock.

We want to tell you about the tender humans we love with our fiercest hearts.

We want you glimpse the richly talented, interesting person underneath the diagnosis. 

The swimmers, and painters, and pottery-makers.

The music-makers, and animal-lovers, and cake-bakers.

See them.

See us.

Because at the end of it all, we need your help. 

Please, help.

Help us love the thief.

All we have is each other. 

aware, prayer, please care