Every year, 1 out of 59 children is diagnosed with autism.
And behind each child—behind the meltdowns and the therapies and the meetings—stands an advocate.
We stand in the shadows, you see. We are the social story-tellers, and the paperwork-doers, and the appointment-makers.
My son Jack was diagnosed with autism in 2005. He was a little boy in overalls and a blue jacket. He was 18 months old.
I hadn’t slept more than two hours in almost two years, and he screamed all day long and threw his food on the floor and my marriage was on the brink and who cared anymore because it was all such a mess.
Please, I said every day to this boy of mine. Please, talk to me. Tell me what you want.
He just looked back at me with deep, purple empty silence.
Yet, at the exact same time as the silence and the messy floor and the screaming, I also had to be his advocate. It felt like the smallest imposition if I’m being honest.
I had to sit in the doctor’s square office and insist something was not right and something was wrong and we needed help—he couldn’t even eat a banana without gagging.
Help me, help us, help him.
And once I stepped out of the squareness and into the bright afternoon, I had to keep up with the explaining and the insisting even though I didn’t feel like it one little bit.
I mean, he was my son and he was hurting and I was hurting and what difference did it make what the people in the grocery store or the library or the postal center thought?
After all, to whom does a child belong? To his mother, or the big blue world?
In the end, I had no choice. I had to help everyone we encountered understand the boy . . . and his diagnosis. I had to make sure he wasn’t misunderstood, or bullied, or marginalized, or excluded.
I had to tell our story.
Jack is 16 now.
He still has autism.
Still, I work—every single day—to tell our story.
Night after night, after the longest bedtime routine in the history of bedtime routines, I sit at my laptop, and I attempt to untangle my life alongside the wily spectrum disorder.
I try to capture the nuances that accompany the diagnosis—the way he pulls his ear when he’s nervous, or . . .
I ask myself the same question: How can I show you who he really is, in the face of what he has?
The thing is, I don’t want to simply report about what he does and how he sounds.
Yes, he bakes cakes.
Yes, he is always looking for something to do, like changing a light bulb gone dark, or stocking our bathrooms with toilet paper.
Yes, when he speaks it can sound a little, uh, robotic.
It’s not enough for me to tell you. I need you to see him and hear him for yourself.
He has a voice. He has a point of view.
Autism is heartbreak by one thousand paper cuts.
Paper cuts sting. They are a distraction. They hurt just enough to make you stop, look up from what you are doing, and wonder for a moment if it could have gone another way.
I wonder all the time.
I wonder what it would be like if he didn’t have autism, and then I hate myself for wondering because autism is a gift and something to embrace and behold and appreciate.
And I do. I do all of these things.
But in the middle of the beholding and the appreciating, sometimes I say very big swear words under my breath.
There is no other way. This is the life I have been handed, and I will do my best by him.
It’s not because I am selfless or strong or good.
It’s because he deserves it.
It’s because he bites his bottom lip when he pours the batter into the pan.
It’s because each morning before school, he offers me a tentative hug—his fingertips grazing my shoulders.
It’s because I love him fiercely.
He gives what he can.
And so will I.
As an advocate, there is an endless amount of work to teach Jack things that come naturally to most.
Phone skills, how to use money, the best way to stop a pot of water from boiling over on the stove.
Yet day-to-day work is simple compared to the larger backdrop of life.
As we sit side by side at the kitchen counter and practice saying hello into the phone, an even bigger conversation looms in my subconscious.
Employment, transportation, guardianship, health care.
This is the life of an autism advocate.
We didn’t ask for it. We didn’t even want it. Yet here we are, asking and wanting.
How can I resurrect a boy from paper, without first resurrecting myself, and my truth?
What is my truth?
The truth is, I am often pierced by a loss that is not my own.
The truth is, I feel his future is in my hands even if this is not exactly the case.
He doesn’t give up, that’s the thing.
How can I?
He belongs to all of us, this wild gift of a boy.
As advocates, we remain in the shadows.
So our children may stand in the light.
Originally published on the author’s blog