My Younger Self
Dear Me,
I know what you’re thinking right now.
You’re thinking he’s going to outgrow this.
He’s going to outgrow the way he stares blankly at the wall when you call his name.
He’s going to outgrow the way he traces the grout line between tiles for hours.
He’s going to outgrow the screaming fits and the way he twists his tiny body away from yours.
He’s going to outgrow the diagnosis printed on paper.
Autism Spectrum Disorder.
I know what you’re feeling right now.
You’re feeling bewildered, shocked, not shocked, and scared.
Deep in your soul, you know your story is changed forever.
From this point forward, it will include autism.
I want to tell you that yes, this is the story of a boy and his autism, but it is much, much more.
It is the story of you, the mother, the life-giver, the milk-feeder, the nose-wiper, the appointment-maker.
It is the story of a marriage under fire—a couple caught inside the proverbial pressure cooker that can be life alongside autism.
It is the story of a tender father, coming to terms with the foreverness that is raising a diagnosed child—a child who may never earn for himself.
A Forever Father whose son will for his hand in public long after he’s surpassed him in height.
It is the story of a world so seemingly narrow, there is no choice but to pull it apart cloud by cloud.
This is the story of work, and more work, and work again.
Work for what others take for granted—dinner at the table, a full night’s sleep, choices after high school.
Again and again, you will wish for a crystal ball to see how this turns out.
Stay off the Internet.
Worry less about what people think of you.
Always, always look for an opportunity to talk about who he is, and what he has.
Middle school is going to be awful.
Puberty will also be awful.
But you’ll get through it, just like you got through the times he smeared soap on the walls and rolled all his food in between his fingers before he took a bite.
And one day you will catch a glimpse of a tall teenager out of the corner of her eye, and your breath will catch.
From there, it’s easy to spiral—to imagine all the things he won’t do or have.
A driver’s license, a career, fatherhood.
You will think of the small sting of paper cuts.
Try to remember all the things he can be, instead of the things he won’t.
You will come to think of hope as a heavy bag of rocks you carry on your back. You sweat and sway beneath the weight.
When it comes to autism, there is no handbook. There is no formula. There’s just you and this boy. And you will question yourself every minute of every day.
In between the sting of the paper cuts and the hormones and the work are moments that dazzle.
A surprise smile in the car.
A rare one-arm hug.
You don’t have to clutch each rock in your sweaty hands, is what I am trying to say. You don’t have to shift the bag from shoulder to shoulder as you climb. Let some things go.
Focus on what’s important to you and do the work. Nothing will come easily.
But he will stop smearing soap. He will sit through dinner. Eventually, he will sleep past dawn.
The moment where you stand will not last forever.
He won’t outgrow it. But he will do things that surprise and delight you.
He will learn to bake.
He will get a job.
He will get into a college program.
And while your heart bursts with pride, your spirit will be heavy, as you consider life in the house without him.
Autism will move you.
Don’t be afraid of the movement. This is the sparkling gemstone autism offers—all tangled up in the mess and the shrieking and the soap.
Carry your rocks lightly.
And love fiercely.
He won’t outgrow it.
But he will change your life.
You are doing all the right things.
Love,
Me
Maureen
February 21, 2022 @ 1:49 pm
Carrie, your post today says it all. You’re such a gifted writer.
It’s so true. My son is 13 yrs in middle school, starting puberty (yikes!) Just when you think the hard times have past along comes yet another hurdle.
You helped remind me we will get through it like we always do and find the joy in between : )