My name is Carrie.
I am married to a man named Joe. We have five kids, and our second son has autism.
When it comes to autism, there are many, many challenges.
Oh, how I loathe the paperwork. I mean, it is endless.
The top of the forms are all the same. Name, address, relationship to child.
Over and over again, I have written the same answers.
Then somewhere on the paper I have to find a spot to add that his name is John but we call him Jack because we make poor choices in life and I am too lazy to go to the office of name-changing or whatever it’s called and officially change his name.
How is it, in the age of smart phones and self-driving cars, we can’t develop a great big database for special-needs parents to log in and chart progress and note setbacks?
Why, if such a thing existed, just last week I would have entered my user name and password and updated his file to read that he started eating shrimp but he stopped eating bananas because autism is a wily, complicated beast.
Instead, we’re still living in the land of forms. I look at all the boxes I have to check and I read all the questions I need to answer and then I shuffle all the pages to the edge of my desk until the last possible moment.
I once filled out a 22-page booklet rating everything from his muscle tone to his attention span to whether or not he starts fires.
The rating scale can be anything from 1-10, or you might have to circle not true, or sometimes true, or often true,or always true.
Then there’s my personal favorite, the N-S-A.
N – never a problem.
S – sometimes a problem.
A – always a problem
Next are the open-ended narrative kinds of questions. Usually they give you about five lines where you are supposed to sum it all up into a nice little story.
What are your child’s most notable personality traits?
Well, he is, uh, quiet. But for someone who is quiet, he makes a ton of noise.
Trying to watch the results show of America’s Got Talent? Jack will run the garbage disposal at the exact same time.
Is it 6:04 in the morning? Cue stomping, grunting, and door-slamming.
Also, he doesn’t know how to whisper.
And he swears a lot.
This is sometimes a problem.
Describe any concerns you have about your child.
I am concerned someone will take advantage of him and steal his pizza and do inappropriate things in a public bathroom.
I am concerned he isn’t happy and he won’t ever move out of this house.
I am concerned. This is mostly often true and on a scale of one to ten I would definitely give it a nine.
The thing is, there is no box for awkwardness.
You know, like when I mention he’s on three different medications to help him sleep and help his anxiety and help the way he jumps and stims, and the person I am talking to says, wow, three kinds of medication that is a lot. And then I smile and shrug but what I really want to say is, well, you weren’t there.
You weren’t there when he was five and anxiety descended upon him and stole his smile and he covered his ears and chanted about painting babies blue.
You weren’t there for the nights he didn’t sleep even ten minutes, and for the mornings he could barely leave the house because he was afraid of the wind chill.
You weren’t there for any of it.
And if you were there, you would sink to your knees and thank heaven above for the medicine that brought this child back.
You would thank the Good Lord himself for the random smile, and the nights you could close your eyes for a little while.
There is no box for this. That’s what I’m saying.
I’ll never know what it was like for my little boy.
When it comes to autism, who do you blame?
More importantly, who do you forgive?
Nothing I do is for today.
Every time I show him how to heat up meatloaf or change the shower curtain or shovel the walkway, it is for a future version of himself I pray exists. It is all for tomorrow.
For as long as I can remember, I’ve measure life by width, length, and depth.
Yet autism added a new dimension. Time.
I am running out of time.
I’ll never know what this is like for him.
I try. I try to know.
I have built my life around him.
No, that’s not true.
We have built our lives around him.
We—one father and three brothers and a single sister and me.
We are better for it.
I am better for it.
His name is Jack.
I am his mother.
He can smell snow.