I have a boy named Jack.
He is sixteen.
He has autism.
Autism is no one’s fault.
It simply is.
I mean, sometimes I like to say it’s my husband’s fault because of bad genetics and DNA and all of that. I’m certain this sort of accusation only serves to strengthen our marriage.
Autism is kind of like a long march. Every day you put on your best face and you swing your arms at your side, determined to propel yourself and this child forward.
When Jack was about five years old, I mentioned to the doctor how he was never more than three inches away from me. All day long, we traced the same steps. We breathed the same air.
The doctor explained that my son needed me in order to regulate himself—he was using me as a barometer of sorts, in order to gauge the storm within his spirit.
This unnerved me greatly. I mean, I am not a person who should regulate a storm of another, if you know what I mean.
Years later, not much has changed. Jack follows me everywhere. He is always near me. I joke we are still attached by an umbilical cord, except I’m not exactly making a joke.
So I try. I try to remember his storm and I remind myself he needs me and I don’t want to upset him.
I do my best to swallow my anger and breathe deep breaths and not overreact when someone leaves a spoon with a big gob of peanut butter in the sink.
It is hard work.
It is exhausting.
It is also the purest form of communication I have ever known.
If I am calm, he is calm. It is just that simple.
And so I march forward.
For sixteen years, I have had a front row seat to autism. Many, many days I would have preferred to sit in the back row. But that’s not how things worked out for us.
He doesn’t play sports.
He isn’t a piano prodigy.
Math club is meaningless to him.
He has no friends.
Who is he?
He is simply a boy who thinks differently, and laughs rarely, and fears greatly.
Fear dominates his life. It controls his every move. It is the chessboard upon which he plays, except it is anything but play. It is a fight-or-flight test of survival.
I have never tried so hard to understand a person in my life.
Why does he talk to himself in the morning?
Why does he swear during dinner when it clearly makes his father crazy?
Why is it so hard to buy him a gift?
Birthdays, Christmas, Easter, Valentine’s Day—for weeks beforehand I Google the latest kitchen gadget or scour those Buzzfeed lists for ideas. I never come up with anything good.
Sometimes I think we are making good progress, with all the marching and the arm-swinging, but then I look up and realize we haven’t really gotten anywhere.
There are days when I want to give up on it all. I want to give up on the social stories and reminding him to say hello and keeping him here with me in the moment when anxiety beckons with its long, bony finger.
I want to give up on all the godforsaken minutiae that is my life with this boy—the questions, the repetition, the small steps forward against a backdrop of uncertainty.
What does it all mean?
Who even cares?
And then I watch him lift his eyes to the cashier, and tentatively ask if he can hold onto his gum after she scans it, and I am inspired once more.
I am inspired to know him, and explain him, and calm his storm.
Who is he?
He is a moment between the lines.
He is the breath of air in the middle of a sentence.
He is one proverbial foot in front of another, day after day.
He is momentum.
I only have one chance to be a mother.
I only have one chance to show this boy to the world, and the world to this boy.
What if I can’t do it?
What if I’m not good enough?
What if I make too many mistakes?
The stakes are so very high.
I have lived alongside autism for sixteen years, and I still ask myself these questions.
At the same time, I can’t pretend to know what this is like for him.
On the days when I feel like the water is rising and I am struggling and trying to catch my breath, it is nothing compared to how hard he swims against the tide.
I will never get this chance again.
And I do not take it for granted. I want you to know this.
I love who he is.
And I cannot wait to see who he will become.
He has changed me.
We are building something here. I can’t quite figure out what, but I know it is strong, and vulnerable, and important, and pure.
How can I give up, when he never does?
For me. Can I please. Hold the gum.
Onward, we march.