A Look at the People Behind Autism

About six years ago, Joe and I took all five of the kids to the beach for the day. The parking lot was far away—down on a little side street, and we had to cross kind of a bridge to get there.

On way back, after a long, hot afternoon keeping track of five kids, a zillion sand toys, and listening to Jack shriek whenever he saw a pigeon, we packed up and headed home.

Allow me, if I may, to give you a visual. Picture our family as a train; Joe, head conductor, leading the way in the first car. He was carrying a very pink 2-year old Rose, and a huge red umbrella that no one sat under even once.

Stretched out between us were three boys, 6-year old Joey, 5-year old Jack, and 4-year old Charlie. I think Charlie had a bucket on his head. Joey was swinging a striped towel.

I was the caboose, and I had 1-year old Henry on my hip and a beach bag slung over my other shoulder. I can remember the way his fat, squishy thigh felt in the palm of my hand.

We were just about over the bridge and I could see the parking lot, when I noticed a small, stooped man walking a very large dog in our general direction. Over the years, this dog has ballooned to nearly fictitious proportions—in my mind, he is now the size of a moose, or perhaps a stallion.

In reality, on this hot day in July, he was probably more, well, dog-size. But big-dog-size.

Really, the size doesn’t even matter because at the time, Jack was afraid every dog in the world. And I mean afraid-afraid. Full-on-panic-afraid. Threw-up-when-he-saw-a-Chihuahua-afraid.

From my place at the end of the line, I heard Jack begin to whimper. And then I heard him start to ramp up to a wail, and I saw his little hands flapping around his head.

I jostled my way to the head of our family train, and caught up with Joe.

“Excuse me, mister? Um, Mister? Do you think you could move to the other side of the street?”

“Carrie—“ Joe shifted the umbrella and touched my arm.

“Not now—Sir! You need to move that dog! My son has autism and he is very scared of dogs!”

“Honey, calm down—“

“No! Why isn’t he moving? SIR! You need to move, he is terrified, can’t you see—“

“CARRIE!”

“What?”

At that very moment, it all snapped into focus. The thick, dark glasses, the words service animal spelled out on the dog’s leash, the woman behind us who gasped out loud when she heard me raise my voice.

“Uh, sorry? Sorry sir! We’ll just, uh, walk around you! Be careful now, there’s a curb.”

(This is by far Joe’s very favorite story in the world.)

I don’t go all mama-bear very often, but when I do, you better believe I’m going to go bat-sh&% crazy on some unsuspecting man and his seeing-eye dog.

See, I am an autism mama, and sometimes I don’t make the best decision. I make mistakes.

I am one in sixty-eight trying to raise a one in sixty-eight. In my own way, I, too, am a statistic.

I am part of an entire tribe—a whole community—dedicated to finding the right services and the best therapies and the latest theories regarding self-regulation.

In the meantime, we are trying to hold marriages together and make deadlines and raise other children.

We are a tired people.

We are lonely.

We are empty.

At times, we are broken.

And yet, deep within us, a fire burns.

We have a point of view. We have things to say on their behalf, and our own.

Sure, sometimes we have different opinions about inflammatory topics like vaccination and gluten-free and ABA therapy, but at the end of the day, we all want the very best for our special people.

See, every morning we put one foot in front of the other even if we’ve had a crappy night of sleep. We sign forms, we make appointments, we call the school to confirm IEP meetings. We stop at the pharmacy for more melatonin and we research the long-term affects of anti-anxiety medication.

We are exhausted, yet tireless; scared and yet fearless.

Each one of us draws on a special resource—a private reserve that gets us through the long days and the interrupted nights and the meltdowns and the obsessions and the aggression.

You might call this our autism super power.

My name is Beatrice and my autism superpowers are unconditional love , patience and cuddles.

We stand behind the lens instead of in front of it, desperately trying to capture the fleeting smile, the rare glimpse of eye contact, the person who hides behind anxiety’s thick, heavy curtain.

We love the unusual, we speak for the silent, we celebrate different. We bond with people others find un-bondable.

We focus on solutions. We advocate.

We hurt every single day.

We love. Oh, how we love—fiercely, with abandon. We love our people without condition or compromise.

We write. We listen to music. And sometimes, we just don’t want to talk about one more thing that has to do with autism.

We clasp the high moments tightly to our chests, like Olympian medals, so they may warm us in moments that are cold and low.

We adapt to our circumstances. We absorbed the diagnosis with shock, and disbelief, and anger, and shame. Then we begin again, we start anew with the child we have, rather than the one we imagined.

I just remember how worth it this little sweet pea is and I keep going.

We play the hand we were dealt. Every day, we look on as other kids kick the soccer ball and score the goal and high-five each other across the rich, green field, and we swallow the biggest lumps in our throats.

We would give anything to crawl inside those extraordinary minds for just one single minute, if only to understand what they’re thinking and hearing and seeing and feeling—to better understand how to reach them.

The more I learn, the more I am in awe of her.

We accept what we cannot change, but we fight for what is possible. And although we’ve been compared to warriors, we know which battles to choose.

We get down on our knees and we pray to our God for strength, for comfort, for direction.

I know for certain that I was meant to be his Mom.

When others turn their back on the stimming and the tantrums and the awkward perseverations, we stay.

I believe in Ian and all of his extraordinary capabilities.

We are brave. We are hopeful. We do not give up.

I will never give up.

We will never give up.

I can’t give up. 

Resilience and perseverance and optimism and intuition and forgiveness and cuddles.

Knowledge, and sometimes, ear plugs.

Faith, adaptability, empathy, and balance.

Intuition and stillness and endurance and persistence.

Grace, and courage, and great big belly laughs.

These are our collective super powers.

I wish each of you a happy forever autism awareness acceptance month.

I salute you today, and every day. I salute us all. We are doing it, you guys. We got this.

What is your super power? Share it in the comments, or here on Facebook. And thank you for being a part of our tribe.