This blog post comes with a strong language advisory.
I’ve been mulling over a few blog posts lately. What to write, oh what to write…..?
I would start things….but not finish. I would have great ideas, but no way to wrap it up neatly.
This was bugging me.
Then the other day, Serafina, (Jack’s biological sister- same mom, different dad, and the daughter of my heart) was showing me her photo keepsake album. There were pictures of her as a small child, of her family in the south, and of her as a gangly teenager. It was delightful.
Then she showed me a picture of Jack as a baby.
Now, I have seen pictures of Jack as a baby before, so it wasn’t a complete shock.
As a matter of fact, there is a picture of him on our fridge sitting in a high chair with a huge grin on his face.
But this picture was different. It showed a very composed, calm child with a look of peace in his face. I was moved by the colors, the composition, and the expression on his face.
Just look at him.
What do YOU see?
I see a blank canvas upon which a masterpiece could be painted. A masterpiece painted with brushstrokes of love, devotion, and courage.
This little guy looks like he could write the next great American novel, pitch a perfect baseball game, find the cure to cancer, forge new paths, be the guy everyone calls to help them move cause he’s just nice like that, and so much more.
Instead: Autism came along and graffitied the hell outta this piece of art.
It wasn’t gentle– like say you get your painting and you are thinking: “wait. is that ECRU? I thought it would be more beige.”
This was vandalism at its worse.
It completely and forever changed this work of art into something unrecognizable.
And for that I say:
FUCK YOU AUTISM. Fuck you and the horse you rode in on.
Damn you to hell for stealing the future and possibilities from this child.
And that goes double to YOU, too Tuberous Sclerosis.
Where the hell do you get off sticking tumors into this kids brain or causing seizures and brain damage?!
Fuck you and all that you stand for.
So what are we left with?
A child –someday a man– whose future is uncertain.
Who will never live on his own.
Who will always be childlike.
Who will always need care.
Who will ALWAYS have tumors in his brain and always have to contend with seizures.
Make no doubt about it. Jackson is no Thomas Kincaid painting. Perfect and safe. Mainstream.
Jackson is not paint by numbers . He defies realism and a conventional palette.
He is cubism. He is a Dali. He is a Pollock. He is a changed canvas that challenges YOU to come to terms with what you see and what you perceive as beautiful. He is art as a verb.
He is the Venus de Milo– still beautiful if not what the artist originally intended.
And listen, I may not know much about art.
But I know what I like.
And Jack is– and will always be — a thing of beauty to me.
So here’s to us– the curators of outsider art– or autism parents.
We see the world differently.
We have to.
Ours is a world of obsessions, aggressions, headbanging, stimming, and sensory overload.
We have found beauty in the unique, in the small victories, and in a moment of true eye contact.
We would give the world for our children, and still we say:
Fuck you, Autism.