Forever, I Will Do This
When I walked into the store, you were standing in the produce section near the fruit. The first thing I noticed about you was your jacket. I love that color blue, and it looked nice with your dark hair.
I walked past you, and I almost tripped over an empty basket someone had left in the middle of the aisle. I glanced over my shoulder and I smiled. I rolled my eyes a little. “Who would leave their basket like this?”
You looked up from your bag of apples, and you said, “A retard, that’s who!”
For just a moment, the world stood perfectly still upon it’s axis.
You see, I have a son with autism.
He is thirteen.
His name is Jack.
Jack almost always comes with me to the grocery store. I guess you could say it’s kind of our thing. Every Saturday he helps me make a list of what we need for the week, and he tries to sneak in all of his favorites, like Hershey’s syrup and marshmallows.
The boy does love marshmallows.
He isn’t with me today because he’s in school. He goes to a special school for kids who have trouble staying regulated and suffer from crushing anxiety and have issues with executive functioning and cognitive flexibility.
He has issues with executive functioning.
Besides, I never shop in this grocery store. I only came here because I was on my way home from the eye doctor and I needed breadcrumbs for dinner tonight.
We’re out of breadcrumbs. I checked just before I left the house this morning. I’m making chicken parmesan.
If he was with me, would you have said it?
If you had noticed the way I have to keep my hand on his shoulder as we cross the parking lot so he doesn’t run away from me when a car is coming—a great big tall boy with size thirteen sneakers—would you have said it?
If you had seen the way he looks at the gum and candy at the check-out aisle, eagerly trying to decide which one to pick, would you have said it?
If you had heard his voice—the sweet, tender voice my husband and I waited months, no years to hear—would you have said it?
I guess what I’m asking is, would you have said it to his face?
Or if you knew that when he was first diagnosed over a decade ago, I was doing some research and stumbled across an article that said poor maternal bonding is a potential cause of autism?
I loved him.
I love him.
If you knew about all the times I wake up in the middle of the night and think about how he has no friends—not a single one—would you have said it?
I don’t just think about the friendship thing in the dark purple hours between dusk and dawn. I think about how frantic he was when he had to leave public school, and how much he wants to be like every other kid he knows, and how I shouldn’t have snapped at him when he screamed because he heard a car door slam down the street.
He hates loud noises, especially when he doesn’t expect them.
If you had the chance to spend just ninety seconds with him, and you listened to him talk about how he wants to bake a chocolate cake for his brother’s birthday, would you have said it?
What if I told you how my husband Joe and I are starting to take steps to plan for his future—to research different kinds of living facilities and community options and public transportation?
We have to plan for our son’s future. We have to make sure he has financial security and a place to live and people who will keep an eye on him and drive him around because there is a very good chance he will never get a license.
Forever. Forever we have to do this.
The thing is, I can explain to you the meaning of cognitive flexibility and deregulation and self-stimulation without so much as batting an eye. I can break down the mechanics of Autism Spectrum Disorder until you’re able to recite the common characteristics of the bell curve yourself.
I can describe the fatigue that comes with raising a child who repeats the same question forty-nine times in an hour. I can tell you how we decided to put him on medication because his anxiety became so debilitating he could barely leave the house.
All of that, well, that’s easy.
The hard part is telling you the story of a boy.
The hard part is bringing him to life for you in this grocery store, while he’s miles away at a special school for special kids. I bet he’s at lunch right now, eating the ham and cheese sandwich he carefully packed in his red lunchbox. He doesn’t like mayonnaise or mustard on it, just ham, cheese, and bread.
I want you to hear him.
I want you to know him.
Mostly, I want you to see him.
I want you to see my son.
Listen, I know you’re a good person. That goes without saying. You are a good person who blurted out a scary word.
The thing is, I can’t convince you it was a scary word. I can’t change your mind by rolling my eyes, or hissing, or sneering. That would just lock you into your opinion, like a skeleton key into a rusty deadbolt.
I have to talk. I have to tell.
Word by word, sentence by sentence, I have to build a bridge. I have to hold out my hand, and invite you to my side of the valley. I have to do this without judgment, or reservation. I have to do this because I care about you and I care about him and I care about autism.
To me, this is the purest expression of awareness.
Forever is how long I will do this.
The truth is, three decades ago we thought people who flapped their hands should live in institutions with high fences and sound proof walls.
Twenty years ago, we thought autism was a character in a movie called Rain Man.
Three minutes ago, you thought it was perfectly fine to shout the word retard in the middle of a grocery store.
Imagine what we’ll think tomorrow.
This is a picture of Jack.
This is his face.
Can you see him?
Please, see him.
He always picks gum. In the check-out aisle.
Forever is a very long time.
My son has autism. That word makes me sad.
Lori Ashley Taylor
March 26, 2018 @ 11:15 am
Great topic to post Carrie! So, did you confront the man? I have the kindest dental hygienist, and she used this word the other day. It is so offensive. She knew I had written my book and what it is about, so I truly don’t believe that people understand exactly what they’re saying and how much it hurts us. How did the man take it when you confronted him? Did you make it short and blunt or longer with details?
March 26, 2018 @ 11:37 am
It was actually a woman, Lori!I just told her that word made me sad and left it at that. 🙂
March 26, 2018 @ 12:09 pm
I like your response to the woman. Maybe she reflected for 1/2 a second. Thank you for being advocates and helping to expand the word-bank for the ignorant. I like this chart: https://imgur.com/m3tiqZh
March 26, 2018 @ 11:25 am
Thank you for these inspirational weekly messages! My son is also 13 years old and is on the spectrum. I can completely relate to the majority of things you mention in our son. He loves the world but does not fit exactly. He is anxious and has stemming issues. He is also behind academically and also attends a private school with kids like him. He loves it thankfully! We are also now in the stages of thinking what is next for him. Will he be able live on his own? Will he drive? There is so much unknown but there is the same unknown with many other kids not on the spectrum. I suppose it is day by day that we tackle all things as best we can. It is positive that we can also in the same breath look to the future and have hope for this. Whatever that turns out to be. Thank you again!
The B Side
March 26, 2018 @ 11:59 am
This is one of those blog posts that I wish everyone could read.
March 26, 2018 @ 12:19 pm
Another beautiful and heartfelt post. Thank you for the time you spend each week sharing what it’s like to love someone on the spectrum!
March 26, 2018 @ 1:15 pm
What a great picture!!
March 26, 2018 @ 6:06 pm
He is a handsome boy! I so wish there was a cure for him and all those with autism. But, there is help for those that don’t understand it and you are providing this help. I will pray for Jack and his family. I also pray for us without autism to open our minds and hearts to draw a circle wide enough for us to all be inside with you and Jack.
March 26, 2018 @ 9:23 pm
On the toughest days of my work with our students who are like your son Jack I think about the things you wish for him and all kids “on the spectrum” and it gives me inspiration to keep doing the best I can for all of them.