Labels
Why I was relieved when my son was diagnosed with autism.
The other day I saw an article that said it was time to get rid of the label special needs.
My son has special needs.
His needs are special.
He has a diagnosis, or a label.
He has a label because he has autism.
This isn’t a bad thing.
How can it be a bad thing?
The day he was diagnosed with autism, I was actually relieved. I was relieved to have a name for the screaming, and the way he traced the floorboards with his finger, and the deep, growing panic beneath my ribcage.
Of course, I was sad. I was scared. I was overwhelmed and uncertain.
But when I zipped up his little blue coat and walked back to the car, I felt relief.
I felt a tiny opening in my chest, like a flower blooming.
Hope.
Jack is twenty-one now.
Sometimes I am sad.
Sometimes I am frustrated.
Sometimes, I hate the label.
Usually I hate it when I’ve spent the morning filling out forms or making phone calls, and the word autism swims before my eyes. I remind myself those six letters are not letters at all.
They are the sail of a boat, billowing in the sunlight. They lead us to dry land.
Have you ever played that game where you take a word, and make a bunch of other words out of it?
Autism
Sit
Sat
Mat
Mist
Must
Stim
Mast
Sum
Jack could not sit and the teacher reported he never sat once not even on the mat and he couldn’t calculate a sum during math it’s like he’s lost in the mist he must learn to behave all he does is stim let us hold onto the mast as we sail this most uncertain sea.
Without the label, you might think Jack is rude, or impulsive, or obnoxious.
Weird.
Strange.
Quirky.
Unfriendly, abrupt, loud.
Stupid.
He is none of these. His brain is simply wired differently.
This isn’t a bad thing.
How can it be a bad thing?
There is a light in him. It is brighter than you can imagine.
But you wouldn’t see it if you didn’t know about his autism.
You would overlook it altogether.
A label is just the beginning. After that, the real work begins. I didn’t realize this when I was zipping up his jacket and buckling his sturdy little body back into the car seat.
We had the diagnosis.
We saw the specialists.
We scheduled the services.
Yet it wasn’t enough. Something was missing.
I sat with my son in our little boat and watched the white, white sail in the breeze.
Together, we journeyed from appointment to appointment, learning about social stories, sleep strategies, and sign language.
And as we bobbed along the waves, I looked up at the orange sun, and realized I had to build a bridge.
I don’t know anything about bridges.
I don’t know how they are made, or how long it takes, or what materials I need.
But I do know how to tell a story.
Over the holidays, Jack was home from his college program. We went out for lunch at the place we usually have lunch when he’s home.
It’s a little restaurant in town, and we always sit at the counter. He always orders chicken fingers.
Every single server knows him. Every single one smiles his way when we sit down, and says, chicken fingers, right Jack? With extra fries?
And he nods back.
While we wait for our food people we know from town come over and to say hello. They lean forward to catch what he has to say. They smile.
They know. They know about the label.
They know he has autism.
They don’t care.
They love him still.
Or maybe they do care.
But they love him still.
In this retaurant, I watched him puff up with pride. I watched his eyes shine. I watched him feel important, if only for a moment.
Please, let him have this.
Let me have this.
Let it be.
Sometimes, all it takes is a label to change the words.
This is Jack.
Jack has autism.
It can be hard for him to sit still.
The other day he sat on a mat for nearly ten minutes.
We let him jump and stim first because his body needs it.
Every day, he holds tightly to the mast. He takes us through the choppy water until the mist clears.
He is greater than the sum of his diagnosis.
First ever Zoom event with Subscribers is tonight!
Topic: Ask me anything! Medication, siblings, college programs, autism resources, etc.
Monday, March 2nd from 7:30 PM - 8:30 PM EST.
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