Today was a long day.
Today, I felt the sting of tears more than once.
Today, autism won.
My son Jack was out of sorts all day, you see.
He kept asking the same questions over and over about COVID and I tried everything—answering him, redirecting him, telling him we would be okay.
When he wasn’t jumping, or asking, he was standing at the sink, washing his hands until they were chapped, and raw.
He watches the numbers. He hears the statistics. And this tall boy of mine worries in a way I never imagined a person could worry.
I tried to distract him with Christmas. Lights! Ornaments! Tasty treats!
It only goes so far, until he ricochets back to death tolls, and vaccines, and lockdowns.
Death. My special boy is worried about death.
He is home all the time now, learning remotely until the end of January.
Can you remember a time when we didn’t know these words?
We are called upon now—perhaps more than ever—for our bravery.
It is not bravery like running into a burning building to save a puppy kind of bravery.
It is the courage to face what is mundane, and ordinary, and dull. Then wake up the next day, and do it all over again.
I wonder sometimes what people think when they see Jack and I together—this giant teenager, clutching my hand in the parking lot, or fidgeting in line for his candy, his blue eyes determined and serious above his mask.
Do they know he has autism?
Do they know he painstakingly wiped his glasses before we walked into the store, hoping they wouldn’t fog up?
Do they know how hard he tries?
Today was not great. Today my spirit plummeted exactly one hundred times. It was mostly during the questions, and when he kept washing his hands over and over, but also when he screamed F&@% during dinner.
Today, I watched my son descend into the black hole of anxiety, and as hard as I tried, I could not help him climb back out again.
Usually, I can. Usually I know the right words and I talk very softly and I say Jack, look at me, look at my face.
It takes a while, but it works. He looks at me and his body relaxes and he stops circling the room.
Today, nothing worked.
I suggested we bake a cake and he said cakes were stupid.
I said maybe we could walk the dog and he said that was the worst idea he’d ever heard in his whole life.
He was angry, and restless, and uncertain.
Tomorrow is another day.
And after that is another day, and another, and another.
The truth is, there will be many day like this. I try not to dwell on it.
There will also be days full of sunshine, and light.
My son has autism.
He doesn’t have the television kind of autism. He doesn’t know how to count cards in Vegas, or solve medical mysteries in a busy hospital.
He has the regular old kind with delayed communication, limited eye contact, rigidity, and anxiety.
Autism has changed the way he eats, moves, learns, and thinks.
It has changed the way I think, live, breathe, and hope.
There are good days, and bad, and good, and bad.
My son wants more, that’s the thing. He wants a bigger life, with a wedding and a child and a driver’s license and a car. He just doesn’t know how to get there. To be honest, I’m not sure he ever will.
That’s how it is with autism. Pain races to the heart, and claims it first. Then, more slowly, the truth follows.
So I show up for him. Even on the worst days, when I have nothing left to give and I cannot answer another question or bear the sight of him washing his hands, I show up anyway.
I show up, and I square off against my most formidable opponent. Or, opponents, plural.
And maybe a smidge of Obsessive Compulsive Disorder.
Like me, maybe you lost your patience today. Maybe you yelled, and the whole time you were yelling the air caught in your ribcage like a broken-winged butterfly.
You are not alone.
Read that again.
You are not alone.
Now, place your hand over your heart and say the words to yourself.
I am not alone.
I believe in you.
Repeat this sentence to yourself. Right here, right now.
She believes in me.
I believe you are strong enough, and tender enough, and good enough to do this job.
This is a most precious love.
It will make you a better mother.
He makes me a better person.
The truth is, there is no winning or losing when it comes to autism. There is simply an eternal battle for this boy named Jack, and his place in the world.
Every once in a while, you come across flower petals scattered on the sidewalk.
And you just know. You know that somehow, some way, a flower managed to stretch and grow through the cracks, and reach wild-like toward the sky.
Get some sleep, Mama. Tomorrow is another day. It will be a good day.
All you have do is show up, I promise.
I love him fiercely.
I love you madly.
I don’t think. People know. I have autism.