The Things I Know Because of Autism

My second son, Jack, was diagnosed with autism when he was 18 months old. Now he’s almost eleven, and let’s just say there are certain, well, unique parenting skills that I’ve learned in the past decade or so.

Because of autism, I understand the acronyms for ASD, IEP, and PDD-NOS.

I know what sensory processing disorder, self-direction, executive functioning, joint attention, and echolalia mean.

Some days, I don’t even notice when I’ve answered the same question fifty-seven times in a single hour.

“Mom. The cake for Henry. His birthday. I have to make the cake blue. How will we make it blue?”

“Yes, Jack. We’ll figure it out.”

The sounds of someone jumping, grunting, spinning, hopping, and whirling are as familiar to me as my own heartbeat.

I know what it feels like to have someone stand over your bed at 6:03 every single Thursday morning chanting, “Waffles. Waffles. Waffles today.” Everyone in our house knows that Thursday is Waffle Day.

I marvel how someone can remember the exact date he last ate a hotdog was July 23rd, 2013, but he can’t remember that 12 x 3 = 36.

But I also know this has nothing to do with intelligence or how smart he is.

I am hard to embarrass.

I have a love-hate relationship with Thomas the Train, Elmo, and Baby Einstein videos.

Right now, Jack wants to own a bakery when he grows up. This is all he talks about. I have learned to listen to his dreams with a combination of tenderness and apprehension.

Because although he can crack the eggs and measure the oil and stir the batter, his attention wanes and he usually wanders off before we’ve even prepared the pans. His failure to attend to a task for any longer than a few minutes at a time prevents him from finishing most projects.

I know what failure to attend means.

I have listened to scripting for TV shows, commercials, ads for car insurance, and lyrics on the radio for hours on end.

“Nationwide is on your si-ide.”

I know what scripting means.

I know how painful it is to watch a child live in a bubble of perpetual, unnameable disquiet.

I know too well the cruel irony of time. In the beginning, we raced to beat the clock; to hurry up and get the speech therapy and the evaluation and the diagnosis because time was running out. Then, waiting. The long, silent stretches of waiting, waiting, waiting—for the first patty-cake, the first pointed finger, the first word.

My heart can swell with love and break into a thousand pieces at exactly the same time.

I have learned to trim fingernails like a super-sneaky stealth ninja.

I know where the melatonin is in Walgreens.

I know what it’s like to have the kid who bites everyone in preschool.

At one point, we swore Jack was deaf, and if I had to admit it, we were actually a teeny bit disappointed when we realized he could hear just fine–especially if one of us was opening a box of animal crackers from three rooms away.

I once told a social story about how to use a public restroom.

I have scoped out our basement and considered adding another bathroom down there, just in case.

I have shared a meal with a person who will not eat food that is too yellow, too mixed, too round, too bumpy, or too smooth.

I am what I like to call a tantrum meteorologist; within a fraction of a second, I can sense the changing winds and drop in barometric pressure that herald a nuclear meltdown, usually over something as benign as static on the radio.

I’ve repeated “Look in my eyes,” ninety million four hundred and sixty-six times.

We bring headphones to the fireworks display on the Fourth of July.

Other days, I do notice when I’ve answered the same question fifty-seven times in a single hour, especially if it’s before I’ve had a cup of coffee in the morning.

“Mom. The cake for Henry. I have to make the cake blue. How. How will I make it. How will I make it blue. How.”

“JACK!  We aren’t making the cake until this afternoon. Stop obsessing about it. You are driving me crazy!”

I know self-loathing.

I know shame.

I know what it feels like to fail.

I love someone with autism. Some days this is my very hardest job.

I know when Rosa Parks died, how long it took to build Mount Rushmore, and what year Skippy started to make peanut butter.

I also know the quiet joys of my unusual son’s heart; the right song at the right volume on the right station during long car rides, any kind of Disney movie, and planning a blue cake for his younger brother’s birthday.

Also researching peanut butter—for this week, anyway.

I know what it’s like to try and hug someone who is as skittish as a scared cat. More than once, I’ve tiptoed into a quiet bedroom after everyone is asleep to stroke his soft, tender cheek. It’s the only time he doesn’t squirm from my touch.

Sometimes, I wake up in the middle of the night and worry about what will happen when I die.

I have watched my husband grieve the child he expected to have—the boy who would wave to him from the school bus and play catch in the yard and curl up next to him on the couch to watch football games on Sunday afternoons—and adjust instead to the one we do have.

I know what it’s like to have a boy who is difficult to describe. He is the richest combination of tenacity and rigidity and mystery and delight. He is like no person I have ever known.

I have a hard time watching parts of Rainman.

I’ve heard all the metaphors:

“If you’ve seen one child with autism, you’ve seen one child with autism.”

“Autism is a long-distance marathon, not a race.”

“When you raise a special-needs child, the lows are lower but the highs are higher.”

To me, these simply mean that one cold winter morning, I will find myself standing alone in my kitchen, clutching a box of cake mix that I snatched out of my son’s hand because I could not bear to see him flapping his hands and waving the box for one more single second.

It means sometimes an autism marathon is nothing but a long, lonely march.

But I know how to find gifts in the most unusual places; a quiet smile, a quick kiss in the morning, the briefest glance into his blue eyes.

I know how to begin again. I know how to rally.

“Mom. It is the afternoon. We have to make the cake.”

“Yes, Jack. Let’s take out the eggs. This time, I want you to grease the pans.”

I know that at the end of the day, beneath all of the stimming and scripting and Skippy, there’s this child. And somehow, I have to fit him in with the rest of our family and the school and the church and the world.

I have to figure out how to help him be a baker.

And when, after a long, hard day of frustration and forgiveness, short tempers and broken eggs, I take the first bite of a lumpy, colorful, lopsided blue cake, and I know hope.

This I know, because of autism.

 Check out both of Carrie’s books, available on Amazon and in bookstores.