Last week, I saw yet another article that claimed to solve the mystery of autism. This time, it was gestational diabetes in the mother. 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. the article pointed to the the manufacturers who make Roundup.
(I’m not even sure what Roundup is. I’ll be right back…Oh, it’s weed killer you use for gardening. 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 that we shouldn’t investigate the heck out of autism spectrum disorder. We most certainly should. We should research what’s causing it, 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 have 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 thirty when Jack was born. Neither one of us are particularly savvy when it comes to technology, and I have 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 named Jack (1 of 5 children). 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?
Blame.
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 is 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, Joe, he understands prayer.
Because of his teachers, he wears his glasses all day long and only takes them off to sleep at night.
Blame them.
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 of our 12-year-old son 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 the 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.
Blame him.
Because of our dog Wolfie, he knows how it feels to cry into the furry neck of a patient, waiting puppy.
Because of 6-year-old son Henry, he knows how to shout to be heard.
Then there is 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 is so much more than science.
He is a fifth-grader who longs to belong.
He is a brother and a son, a track-runner and a 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 difficult 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 is my friend. Don’t talk to him that way.”
“What Color Is Monday?” is available on Amazon.com and BarnesandNoble.com. You can also follow Carrie on her weekly blog: www.WhatColorIsMonday.com and Facebook.com/WhatColorIsMonday.
