THE BLOG

What Does Autism Awareness Even Mean?

04/01/2015 01:38 pm ET | Updated Jun 01, 2015
Carrie Cariello

April is Autism Awareness Month.

I'm not sure when this tradition started. Does anyone out there know? I would research it, but I'm in the middle of eating a huge, yummy cinnamon roll from Cinnabon and I don't feel like multi-tasking.

But it's a curious thing, this awareness.

When my sister and I were kids, we would play a game where we'd say a word over and over again until it lost all of its meaning.

aware aware aware aware aware

Then we'd try to think of as many rhymes as we could.

Aware, despair, somewhere. To stare.

But what does autism awareness really even mean?

I know it is a chance to celebrate the unusual, to rejoice in ideas like inclusion and integration and bright, colorful days. It's an opportunity to educate the public about why our kiddos may throw huge tantrums in Costco or jump up and down in the aisle at the movies. It's good stuff, this awareness.

When my son Jack was about nine, he would lock himself in the bathroom at 4:00 every single afternoon and have the most horrific bowel movements I've ever seen. He would take all of his clothes off and moan and wail. Then he would run all over the house and make poop-footprints on the floor and splotchy handprints on the walls.

For the entire year, every afternoon at about 3:58, I pictured myself opening our front door, walking outside and never coming back.

Does this story make you more aware of him and his autism?

Aware, beware, nightmare.

If I tell you how sick of the whole cake thing I am, will you understand autism any better?

Because I am sick of it. I am sick of the ceaseless talk about cake and the making of the cake and the washing of the pans. Never in my wildest dreams did I ever think I'd say this, but I am sick of cake.

Ever since he announced he wanted to be a baker about six months ago, 10- year-old Jack has full-on perseverated about this topic. I picture his brain like Candy Land, only instead of fun candy and characters, there are long, criss-crossing tracks of cupcake tins and tubs of frosting and sprinkles.

But here's the thing: He's not getting any better at it. He's not exactly mastering the art of baking, or even staying with the project long enough for the pans to go into the oven. Basically, he wants to crack the eggs in the beginning and frost the cake at the end.

It is frustrating and painful to hear him talk about something he dreams of, yet have no idea how to give him the tools to accomplish it.

This spring, we went to the Caribbean for spring break. And when we landed and were dragging our five kids and our luggage through customs, I saw a family trudging ahead of us in the same line.

There were three young boys, a mother and a father. The dad was wearing a baseball cap. The mom was petite with dark hair, and she was walking very, very closely to one of the boy's who looked to be around Jack's age. He hopping up and down and twitching his fingers.

Another autism mom.

I wanted to ask her a million questions.

How old is he? Does he talk? Does he have an aide in school?

Does she wish life was different?

Does she feel overwhelmed and lost and scared and anxious?

Instead, I reached out my hand and brushed her shoulder with my fingers.

"Hey, Mama. Long day?"

"Yes," she smiled. "Very long."

I caught up with her a few days later. We were staying at the same resort, and one morning she walked over to where I was sitting and watching the kids on the water slide. Without ceremony, she sat in the chair next to mine.

Her name was Melissa, and her middle son was Landon. He has autism. He doesn't have language, and he loves pot holders. Every day she drives him an hour each way to school.

"Yeah," she said, her light blue eyes twinkling. "It really sucks sometimes. But I love him more than anything in the world."

I know we're lucky, because Jack is considered high-functioning. He talks. He is potty-trained. He can have conversations, as long as it's about frosting or license plates or Nicki Minaj.

But for others, there is less to celebrate. For some families, autism is little more than an upwards travail.

No cakes. No baking. No words. Sometimes, no sleep.

Aware, impair, unfair.

It is a road no one would choose, and yet there are many, many footprints on the bumpy, messy, uneven path. And high or low or nestled somewhere in between, we all want the same things for the complicated people in our lives.

We want them to know happiness.

We want them to know love. And hope and forgiveness and joy.

We want them to stay safe.

Most of all, we want them to live the life they wish for themselves.

"He did say a word last year," Melissa said as she got up from her chair. "It was his first word in seven years."

"Really?" I leaned toward her. "What did he say?"

"He said Mom. He said it on Christmas morning." And then she walked away to find some sunscreen. Remembering her silhouette in the brilliant sunshine, I know what's missing in Autism Awareness month.

You are.

Yes, you.

Without you, autism awareness is an exclamation without a point, or a balloon without enough air. It is lacking. Because without you, the breathtakingly unusual person in your life would simply drift -- it is you who keeps him or her or them afloat and buoyant.

You make appointments for speech and OT and the neurologist.

You change soaked sheets in the middle of the night or wipe poop off the walls in the afternoon.

You cry yourself to sleep after researching preschools online.

I hear you.

I see you.

You are not alone.

You cut fruit for a salad for the nine-thousandth four hundred and fifty-second time, even though the person at your table refused to try even a little bite the first nine-thousand four hundred and fifty-first times.

Aware, unfair, ripe pear.

You are a child who feels unheard within your own family, because autism's voice can be so loud. You watch Disney movies when you'd rather watch "Transformers," you listen to hours of Minecraft, you eat pink camouflage cake on your twelfth birthday.

You are not invisible.

You stand in church next to a tall, gangly boy in a red jacket and let him wind his fingers through your long, wavy hair because you know this keeps him calm.

Aware, nowhere, long hair.

You are trying so hard to hold on to your marriage.

You are trying to make people understand.

You feel like you could literally go crazy and tear out your own hair at the injustice of it all. And if you have to listen to that dumb puppet Elmo singing one more nanosecond, you just might run right out the door.

You wish there was a crystal ball to tell you how this will all turn out.

You can't decide if you should have another baby.

You wish he would sleep.

You wish she would talk.

You are tired and scared.

You are taking it day by day, night by night -- sometimes minute by minute.

You are the front line and the middle march and the last hope.

Aware, threadbare.

Yet even on the bleakest days, your heart can soar with hope and love and pride. Maybe it's a single new word or a bite of pizza; maybe it's a full night of sleep or a trip to the grocery store without a meltdown. But it's there; your very own autism awareness.

You are an autism mother and father, brother and sister. An autism grandma and grandpa and cousin and aunt and neighbor and friend. If I could, I would send you a warm cinnamon roll with lots and lots of frosting.

But I can't, so instead I will tell you a little secret: because of you, I reach into the cabinet for the cake mix and tell my son to take out the pans.

Aware, bakeware, to share.

This April, I'd like to do more than just increase awareness about tantrums and speech delays. I'd like to honor those people behind the people, the ones who work every day to keep their balloons aloft.

How about you do it with me? How about you put the name, and maybe a picture, of a special person who handles the daily care of an unusual person with grace and compassion in the comments below?

I'll go first.

For Melissa. On Christmas day and always, you are an autism mom.