One Thousand Ants
Imagine if, for one day, you had no ego.
Your self worth wasn’t based on how much money you make, or how many trophies you’ve collected, or if you’re pretty or thin or funny.
Imagine everywhere you go, people stare at you.
The mall, the grocery store, the library, restaurants.
People stare at the way you move. They whisper into their cupped palms when they hear you talk. They exchange glances as they watch you.
Imagine every single day of your life, you wake up afraid.
Afraid of the cold weather, and fire drills, and loud noises.
Imagine you went to school and they told you to sit but you just couldn’t sit and they told you to stand in line but the line was so long. So they said stop it now. They told you to be better. They wanted you to be different.
Imagine every time you tried to play the game, the rules changed.
Imagine the very things that bring you joy also cause you deep distress.
Maybe all day you waited and waited for a slice of birthday cake, but your favorite show came on right before the candles and you can’t decide if you should sing or watch because both are important and you can’t miss the show or the singing.
Imagine people around you said you were bad.
They said you needed discipline. They complained you were spoiled, and rude.
Imagine you felt broken in a world full of wholeness.
Imagine you felt less in a world full of achievement.
Imagine you had autism.
My son Jack has autism.
People stare at him and he is afraid and he doesn’t care about being first, or best. He doesn’t care if he’s the smartest, or the fastest.
He cares about a nice dinner around the table.
He cares about Amazon Subscribe & Save, and soft pretzel rolls, and keeping his glasses very clean with special wipes.
Last week was my birthday. My son worried about the perfect cake and the decorations and the meal.
But dinner ran a little late because the baked potatoes took forever, so when it was time for cake, his favorite show had started. You could see the panic in his face. You could see he was trying to decide.
Once upon a time, I thought the diagnosis was the end. Little did I know, it was only the beginning.
He fusses over the littlest things. I don’t love that word—fuss—but I don’t know how else to describe it.
He organizes the travel shampoos just so in the linen closet. He checks the bathrooms to make sure there is enough toilet paper.
Long into the evening, when I just want him to go to bed already, he lines up tubes of toothpaste and arranges the bathroom towels.
Why? Why does he do this?
Is it some inner need for control over beauty products?
Anxiety? Obsessive-compulsive disorder?
Yes.
All of it.
Or none of it.
Maybe some of it.
He believes people are good. That’s the thing. He believes he is safe and fine and no one would ever hurt him.
Imagine you had autism.
Imagine you walked into Staples for a new blue folder and the music was loud.
And the cashier started to talk to you about your blue folder at the same time the loudspeaker bleated out an announcement about copy services and you couldn’t untangle all the words so you started to flap your hands to make yourself feel better.
Imagine your body felt like one thousand ants marching all over your legs and arms and neck with their little ant-y feet and you want to jump right out of your skin just to shake them loose.
Imagine every time you tried to be yourself—your imperfect, flawless, honest self—you were told to be better, and different, and you need to try to sit still and use your words and make eye contact to show you are paying attention.
But looking in people’s eyeballs makes you feel stormy inside, as though a blizzard was swirling.
Imagine you had autism.
I have been imagining autism every day for nearly sixteen years, ever since my son was diagnosed.
He chases dreams the way you and I chase the wind.
If you had autism, would it make you better or smarter or happier?
Or would you feel sad/isolated/lonely/angry?
Yes.
All of it.
Or none of it.
Maybe some of it.
I don’t know who I am anymore.
Am I a dream-holder?
Or a wind-catcher?
Sometimes I sit on our front porch after everyone has gone to bed. I breathe in the night air, and I think about a boy.
I think about all that’s been stolen from him, in the name of autism.
Trophies, a driver’s license, friendship, peace.
I think about all that’s been given to me, in the name of autism.
Blue folders, perspective, grace, pretzel rolls.
I think about how I need to live forever.
How can I live forever?
All I ever hoped to do was to bring a boy to life in front of your eyes. I wanted you to see him, and hear him, and know him.
I think about all of this on my front porch, and I let the sadness and the goodness mix together. For so long I tried to keep them apart, but now I’ve learned to let them get all mixed up and cozy.
Also, I watch the bird feeders.
Mom, mom, it is your birthday.
Yes, buddy. It is.
Your cake, we got birds on it. For you love to see. The birds.
Be you.
Be you, my Jack-a-boo.
My twins
September 28, 2020 @ 10:12 am
It’s the very moving piece which is maxed my thoughts. I am so with your story with “all of it, some of it or none of it”. Autism carries forever, everyday, every year when you are here. I am the mother of autism twins then I have everything in twice. I inspired your courage, motherhood. Thanks for sharing.
Mary Bishop
September 28, 2020 @ 10:36 am
Jack is such a sweet boy. He loves you and wanted your birthday to be special so made sure you noticed the birds.
Lynda Eskridge
September 28, 2020 @ 11:32 am
Carrie, you have a dear boy. Jack has four brothers and sisters, I was an only child and noise bothers me too. I love my five grandchildren and I can’t wait to visit with them, but when they leave and house becomes normal and quiet I feel normal again. It’s O.K. Jack, your Mom’s Birthday cake was special as she is, Happy Birthday Carrie……
Deb
October 6, 2020 @ 8:08 am
Happy belated birthday. Jack is so lucky to have you and your family as supports. Jack is not the only one who finds the loudspeakers and the ever present music disturbing, me too. I just irritated and angry and Miss Katie, she gets agitated too and holds her hands over her ears.
Jack and Katie do out loud what the rest of us only think about:)
You’re doing a good job. Jack is a lovely young man. He is who he is and he is loved. How many of us get that?
SCOTT WILCOX
October 6, 2020 @ 8:06 pm
So much heart here, on both sides.