I saw another article that claimed to solve the mystery of autism last week. This time, it was gestational diabetes.
It’s always something, isn’t it? Either autism is because of advanced paternal or maternal age, or the dot-com era or people who eat gluten. It’s the manufacturers who made Roundup.
(I’m not even sure what Roundup is. I’ll be right back.)
(Oh. It’s weed killer you use for gardening and stuff. No wonder I didn’t know what it was.)
I know it’s all in the name of research and ultimately it’s super-important stuff, but the subtext of these headlines feel, well, a little vengeful. They feel like accusations.
I’m not trying to argue we shouldn’t investigate the heck out of autism spectrum disorder. We most certainly should. We should research what’s causing it and fund the programs for it and do what it takes for people on the spectrum to lead full, productive, happy, meaningful lives.
But this undercurrent of blame hurts — a lot. It hurts to think a choice I did or didn’t make contributed to my son’s condition. It makes me feel hopeless.
Even though I know — I know — there’s nothing I could’ve done differently, I still pause when I read things like this. I hover over them for the tiniest second before I click on to something else.
And still I refer to the mini-checklist in my mind: nope, I didn’t have gestational diabetes. My husband, Joe, was not even 30 when Jack was born. Neither one of us are particularly savvy when it comes to technology, and I’ve never grown so much as a tomato on my own, so I never used Roundup.
On Mother’s Day in 2004, I gave birth to a 9-pound, 3-ounce baby boy. This boy was wired differently from the very beginning, and because of that we suspect genetics played a heavy role. That is our autism story, and I’m sticking to it.
But we all have our own stories to tell — our own pathway down the bumpy spectrum road. And each one is authentic and true and raw and sometimes, hilarious. Each one is simultaneously heartbreaking and heartwarming.
So how can science pin down a single cause, when autism hardly has a single story?
You know how with a kaleidoscope you can look inside and see a thousand colors and patterns all at once? And then if you turn the dial a little bit, the colors and shapes move, and everything looks completely different?
I think autism is like a kaleidoscope. It’s ever-changing and always shifting. It looks different to everyone.
And I think blame is a lot like a kaleidoscope, too. We can consider it from one angle, and feel pain and embarrassment and shame, or we can turn the dial just a smidge and know hope.
Because of his grandmother, Jack eats pears.
Because of his father, he understands prayer.
Because of his teachers, he wears his glasses all day long and only takes them off to sleep at night.
Because of my daughter, Rose, Joe and I knew for sure that the sneaky anxiety snake was indeed whispering in his ear once again.
After eating breakfast together one morning, Rose waited until her brother went upstairs for his sneakers before she touched my arm and said softly, “Mom, something isn’t right with Jack.”
It was a few weeks after Easter, and she was still wearing the pink rabbit earrings that the Easter Bunny left in her basket. It was her very first pair of dangly earrings.
How can a 7-year-old girl wearing her first pair of dangly earrings so aptly describe her big brother’s anxiety?
“He just isn’t himself.”
Because his 12-year-old brother, Joey, Jack runs track on Wednesdays.
See, Jack hates sports. He really hates anything right now that doesn’t have to do with YouTube videos and Oreos and baking cakes. So we signed him up for Special Olympics track team. And he threw the biggest fit you’ve ever seen until Joey agreed to do it with him.
And during the first practice, Joey took off down the track, his neon yellow sneaker flashing. He looked back over his shoulder at his brother, and then slowed just enough for Jack to catch up. Jack jumped on his back, laughing.
If Jack believes he is fast — that he can run like the wind and feel the cool breeze of a New Hampshire spring in his face — well, that’s all Joey’s fault.
Because of our dog, Wolfie, he knows how it feels to cry into the furry neck of a patient, waiting puppy.
Because of my 6-year-old, Henry, he knows how to shout to be heard.
This weekend we had Jack’s birthday party. The extent to which my son obsessed over this event is difficult to put into words. Over and over and over and over, he wrote out long, messy lists and schedules and recipes and ingredients and more lists, until, frustrated beyond reason, I huddled in my bedroom and hid from him.
Then, about five days before, before he decided he needed to make blue cupcakes. Nothing but blue would do. We searched everywhere — Hannaford’s, Stop & Shop, Target — for blue cake mix. Then we tried Amazon. We found it.
Jack hovered over my shoulder while I sat at my computer and tried to add it to the cart. But it was considered an add-on — an item that’s so small you have to order a bunch of other things in order to buy it.
Jack started to jump and scream. I started to sweat.
Just as Jack and I were both about to lose our minds — albeit for very different reasons — my 9-year old, Charlie, walked into the office.
“Wait! Mom, why don’t you check the box that man Duff sent us? Maybe he gave us some blue mix.”
Sure enough, we dug around and found one. I nearly wept in gratitude. Thank you, Duff Goldman. Thank you, Charlie. I blame both of you for the lumpy blue cupcakes that stained Jack’s teeth when he smiled.
Then there’s Cody. Sweet, adorable, green-eyed Cody, the boy in Jack’s class who told another boy to leave Jack alone and stop calling him names. I blame Cody for being brave and honest and kind. I blame him for being one of Jack’s very first friends.
Then there’s Jack himself: the owner, the landlord, the keeper of the spectrum key. He never asked for this diagnosis. He never asked for a cure or for headlines or blame.
And he’s so much more than science.
He’s a boy who can’t understand what an add-on means when you shop on Amazon.
He’s a fifth-grader who longs to belong.
He’s a brother and a son, a track-runner and a blue cupcake-baker.
Like a kaleidoscope, he is colorful and beautiful and perplexing. Sometimes, he makes my eyes hurt. Sometimes, he makes my head hurt and other times, my heart.
As the world of science continues to tackle the hard job of figuring out where autism comes from, I’m going to continue turning the kaleidoscope in my hands so I can learn the patterns and colors and mystery right in front of my very eyes.
I’m going to celebrate the people – and puppies – responsible for Jack’s progress, his joy, his confidence and safety.
“Hey. That’s my friend. Don’t talk to him that way.”
A version of this post originally appeared on Carrie Cariello’s blog.
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