It’s April now.
Here in New Hampshire, we are treated to the occasional shirt-sleeve day, when the sun warms your arms and you can cast your jacket aside.
April is Autism Awareness Month.
My son has autism. His name is Jack. He is almost fifteen.
What can I tell you about autism that you don’t already know?
It’s a collection of characteristics related to speech delays, difficulty in social interactions, and perseverative behaviors.
It affects one in fifty-nine children in the United States.
It is a mysterious, complicated condition that changes the landscapes of families all around the world.
I wish so badly I could tell you what it’s like to have autism, but I can’t. I don’t have it, see. My son does. And he doesn’t do such a great job explaining stuff.
I can only tell you what it’s like to raise someone with autism—to try and hold a child who resists my touch, and make sure he doesn’t eat sixteen pancakes at a time, and keep him from running behind a car in the parking lot.
I am his mother, and he is my son.
What if I told you that as soon as he comes home from school, he checks on a bunch of things?
Would you understand his need for order?
He walks through the house and opens the cabinets to see if I went grocery shopping. Then he looks in the bathrooms to make sure the toilets are flushed. After that he refills the Keurig if the water is low, and swaps out any lightbulbs that have burned out while he was gone.
What if I told you raising a child with autism is everything and nothing you could imagine?
It’s frustrating and inspiring all at once.
I suppose you could say it’s like motherhood on steroids. Everything is magnified—the highs, the lows, the disappointments, and the joy.
What if I told you there are days I want this all behind me?
I want this behind me, and yet I want it all back again.
I want it back so I can do it over and I can do it right, so I can be a better version of the person I am.
I snap at him when he chews on ice.
I grit my teeth when he asks a lot of times me if I prefer Disney’s Aladdin over Maleficent.
I hiss Jack when I hear him talk to himself.
I guess you cold say parts of my spirit are difficult to visit. My love and fear and trepidation and worry are all mixed up together, and some days, this makes me a snapping shrew.
What if I told you that the other day he and I were eating lunch together, and he popped a French fry in his mouth and told me he doesn’t know how to laugh.
For me. I do not know. How to laugh.
Would you think he was weird and cold-hearted and lacked empathy?
He has empathy.
But he rarely laughs.
He doesn’t even smile that much—maybe once every few days at the very most.
What if I told you I don’t know where he’s going to live when he’s an adult?
I can’t stop thinking about this. I think about it when I’m at a stoplight, or buying a new jacket on Zappos, or just sitting on the couch in my pajamas after a long day.
I am forever racing against an imaginary clock.
Where will he live?
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.
No big deal.
I just have to make sure no one bullies him or stalks him online or touches him where no one should touch him.
For the rest of my life, I have to do this.
Again, no big deal.
Well, kind of a big deal.
What if I told you how the other day, I sat in a large office and talked to a neurologist for over an hour about different combinations of medications and all of their side effects and how an increase in dosage could make him stop sleeping altogether?
Would you think I was a terrible mother?
Maybe I am. I don’t know. But he needs it. He needs three different pills every day so he can function and I am tired of hating myself for it.
And while she and I talked, Jack circled the room like a caged tiger, touching things a teenager should know better than to touch—the stethoscope and the blinds on the window and the roll of crinkly paper attached to the bed—because he has no concept of boundaries and he struggles with impulsive behavior.
So I watched the lovely doctor’s lips move, and I kept one eyeball trained on him, and every once in a while I asked him to please sit.
This is my life. This is what I do every single minute of every single day, because this is who he is.
What if I tell you how often I think about dying?
Would you find me morbid, and depressing, and strange?
I need to stay alive.
Can you see this?
I must stay alive forever because no one else will understand that you should really ask him before you hug him and if he says yes, he likes a one-arm hug, not two. If you use two arms, he’ll squirm.
So I run. I do yoga. I get mammograms, and I try not to eat too much fat even though I love pizza.
What if I told you that raising a child with autism is like trying to catch the wind in my hands?
It is, you know.
It’s like trying to shape something so lovely, so strong, so unusual and powerful and ordinary, that one day you look up at the stoplight, and realize it was never yours to change in the first place.
If I tell you all of this, will you understand autism a little better?
I am his mother. And he is my son.
I will tell you my truths, if you will listen.
Only then, can we see one another clearly.
I have to live forever. I have to teach him how to laugh.