Still, I Worry
The other day, my 17-year old son Jack asked me to drop him off at Walgreens so he could buy a couple of things. He planned to use his debit card, and when he was finished, walk across the parking lot to the restaurant where he works.
To many, this doesn’t seem like a big deal. After all, most teenagers navigate stores on their own—plunking down money for Gatorade or gum.
Jack is not like most teenagers.
Jack has autism.
Autism is a condition of the brain. It alters the way he thinks, moves, speaks, learns, and sleeps.
Every day, I worry.
At first, I worried he’d never talk or sleep through the night or connect with us or learn to read.
He did all of those things, and more. He has made so much progress, it takes my breath away.
Now, as time marches on despite my quiet whisper for slowness, I continue to worry.
Once a week he and his father go to the bank and Jack deposits his paycheck. He writes down his balance and tucks his debit card back into his wallet.
At seventeen, he is ready to stretch his wings a bit.
And who can blame him?
After all, this is why we do the work. This is why we make trips to the bank and remind him to check his balance.
And yet, I was reluctant to let him fly, even just through the glass doors of a local store.
I worried he might have trouble with his debit card and he’d get really agitated and I wouldn’t be there to smooth things over or explain the keypad.
I worried he’d keep his head down as he crossed the parking lot and wouldn’t see a car backing out of a spot.
I worried someone would say something mean, or poke fun at his unusual speech pattern, or stare at the way he fidgets in line.
Yet it feels as though every moment of every day is spent preparing this boy for a life of joy, delight, and as much independence as he can manage.
After all, we went over and over how to use his debit card.
We’ve practiced crossing the parking lot and watching for cars.
And he doesn’t seem to care when people stare. Usually, he just stares right back.
A solo trip to the store with a short walk to work seems like the perfect opportunity for him to stretch his wings.
Still, I struggle to find the balance between growth and safety.
I don’t know why.
Wait.
Yes I do.
The other day I paused in my newsfeed to read an article about a family who fostered a child with autism. Before clicking on the link, I scanned comments.
Tragedy.
Chemically damaged.
There are people out there who believe these things about my son.
They believe he is a tragedy, and he is damaged.
Jack has come a long way, it’s true.
But what if the world around us is slower to catch up?
It’s easy to assume I tell our story because I am brave.
In fact, it is the opposite. I tell it because I am afraid.
I am afraid someone will hurt him and I won’t be there.
This is perhaps the darkest part of special-needs parenting.
I am an autism advocate.
This job is very big—bigger than me. And it starts with telling.
I have to tell you everything, even when I don’t know how.
I have to tell how that he cleans his glasses at least three times an hour and still loves old episodes of Scooby-Doo.
I have to tell you that yes, he is seventeen. Yes, he is tall. But his heart and is spirit are young.
He is vulnerable.
You will never meet another person like him in your life. I guess you could say he’s like a like painting full of color and light—a curious mix of red and blue and green that, at first glance, looks like a big old mess.
But then you step back, and you look again. You see each color separately. You look down at your feet and you look up once more, and you realize it is more than a painting. It is a tapestry, and it tells a story about a boy named Jack.
A boy who makes me turn inward, and discover who I am as a mother, a human, a wife, a friend.
I am determined to tell you about my son and his autism and my fear and our triumph so you may see him, and hear him for yourself.
I have to tell you about the color and the tapestry and I have to make you feel as though you know my Jack-a-boo, so that one day, you might help me.
I need you.
Yes, you, gentle reader.
Will you see yourself within our story?
Will you peer into the blaze of hatred, and behold the beauty of a complicated child?
Will you show compassion for the unusual, and mercy for compromised?
Will you think before you speak, and breathe before you act, and listen for those who have no voice?
Will you help me keep him safe?
I need you.
He needs you.
Mom, look. I bought Life Savers. The peppermint kind.
Nancy Piccolo
May 17, 2021 @ 9:30 am
You face so many hard decisions and like most mothers, you hope you have made the right one….one that will help your child safely grow. ❤️
TracyEllen Carson Webb
May 17, 2021 @ 12:40 pm
I get the worry. We just started doing a debit card this year too. MY son is 19. He’ll be 20 the end of the summer in August. Just the other day, he stayed home all alone for all day. No backup caregiver. Just him. And I worried all day while I was gone. I couldn’t give my whole self to the thing I was doing. And I got the “you are way too overprotective about him. He’s now an adult. YOU do an excellent job of explaining why we worry.
Amanda
May 17, 2021 @ 3:23 pm
Thank you for sharing. Your story gives me great hope for the future. My little guy is only 8 and has already come leaps and bounds. There is always room for growth💙
Janet Anderson
May 17, 2021 @ 5:20 pm
My grandson is 22 now and his mother (my daughter) is by his side everyday also. Hard decisions have been part of her life, she would understand everything you write about. The main goal like yours is to provide every bit of info to him to help him grow and hopefully on day be independent and safe. The admiration I have for you mothers goes beyond saying. Thank you for sharing your struggles and those hard decisions that have to be made. Your are Very Special.