My name is Carrie.
I have five kids.
My second son has autism.
His name is Jack.
People ask me what I find the hardest when it comes to raising a child with autism.
Is it the repetitive behavior—the way he asks the same question 17,395 times, even when he already knows the answer?
Or is it the long IEP meetings in a room full of specialists?
I picture autism a few different ways.
I picture it as long strands of DNA, twisting and turning within a tender baby yet born.
I picture it as a Cheshire cat, smiling from every corner of the room.
It is an idea, a diagnosis, and a concept without a cure.
Mostly, though, I picture it as a living, breathing being who has wrapped himself around my child’s soul—a nagging vine twisting through his vertebrae, up through his heart, and into his mind.
Some days I think about who have might have been, without the slippery spectrum disorder.
A doctor, racing around in a white coat?
A park ranger, walking trails late into the night?
Maybe a mail carrier, or a franchise manager, or a teacher.
The funny thing is, I never thought of this stuff before he was diagnosed. I never pictured him as an adult at all, to tell you the truth.
It’s amazing the dreams you have once they are stolen from you.
Jack sweeps floors at the local Food Bank. Twice a week, he visits with his aide and he takes a large broom and shuffles it around the building for an hour or so.
When I tell people this, their eyes light up and they smile and they say oh how great he is doing something productive and good for him, good for him.
So I smile back and maybe the smile doesn’t quite touch my eyes, because the whole time I am good for him-ing, I am thinking there is not one person in this world who hoped their child would one day sweep floors.
I can’t help it. I want to be better than this. I am not.
But it is good for him. I know it is.
He shows up, and he sweeps, and afterward they get fried chicken at a place around the corner. This makes him happy.
And the truth is, if he wasn’t out sweeping and carefully ordering his chicken from the counter, he would be home, on my couch. Or arranging DVD’s in long, neat rows. Or wringing his hands and screeching because I told him to get off the couch, and stop messing around with the DVD’s.
So, it’s good for him.
It’s good for me.
Still, I feel uncertain about it.
I don’t know why.
That’s the thing about autism. The heartbreak is not one big wound, but rather death by a thousand paper cuts.
It’s not as depressing as it sounds, I promise. I mean, I do other things.
I get my car inspected and I buy almond butter for my oldest son.
I go out to dinner with my husband, and order books on my Kindle, and grill chicken for dinner.
Most days, I do all of this without at pit in my stomach. These are the good days.
Other days, well, they are not as good.
I think about how Jack may never have a car and he hates almonds and he hardly ever reads.
I think about the way he carefully sets the table for dinner, waiting—always waiting—for everyone else to come home.
You see, I am trying to examine autism from every possible angle—to hold it up to the light and try to see the color, and at the same time understand the darkness.
I guess you could say I am engaged in a great big game of tug-of-war. I stand on one side of the rope pulling, and straining, and sweating.
While I am pulling, I have to fight off the fear that swarms my head like a bunch of angry bees.
What am I so afraid of, you ask?
Well, the obvious stuff, of course.
I’m afraid he’ll shout a bad word in church.
I’m afraid he’ll never make friends.
I’m afraid someone will hurt him.
Mostly, though, I am afraid of what every single mother and father is afraid of—I am afraid I will fail him.
I am afraid I will leave the proverbial stone unturned. And beneath this stone lies all the answers to the very questions I have struggled to understand.
How do I motivate my son?
How do I connect him with others?
How do I provide for him when he is an adult?
How, for the love of all things good and holy, do I get him to stop swearing?
On the other side of the rope is my silent opponent—the twisting vine, the Cheshire cat, the thief in the womb.
Autism barely even breaks a sweat. I have a feeling there is little, if any, exertion.
Autism stands strong.
Where is my son in all of this?
Autism wants this boy of mine. I can feel it.
Autism wants my son to repeat himself over and over again and worry about the weather and check Rotten Tomatoes and feel twisted up lonely scared all the time.
I want him, too.
I want him to be the best person he can be.
I want him to have choices.
If he wants to clean floors and stock shelves, fine.
If he wants to be a teacher, or a manager, or a park ranger, I will try to get him there.
I want him to know he is whole, and loved, and good.
What does Jack want?
Well, the simplest things, really.
Fried chicken in a red plastic basket.
A neat row of DVD’s standing upright on the shelf.
The hardest part of all of this for me?
I have to love them both. I have to love my boy, and his autism.
I love the boy. I love this boy the way the moon lights the earth during an eclipse.
To love autism? Well, I am trying.
I am trying to give the rope some slack, slowly and gently, until our fingertips touch.