Let Him Be
To be clear, I did not go to medical school. I am not a doctor. I’ve never even played one on television.
I am not educated in the world of neuroscience, or brain development, or psychology.
Hi.
My name is Carrie.
I am a forty-five-almost-forty-six year old housewife with five kids. My husband Joe is a dentist.
Our second son has autism. He is sixteen. His name is Jack.
Actually, his name is John. But we call him Jack. That way, when we go through airport security or have an appointment with a specialist, he can shriek and insist his name is not John, it’s Jack. We’re fun like that.
Yes, Jack has autism. He also has anxiety. Anxiety is autism’s co-pilot. It is the Robin to the spectrum’s Batman, and together, they take turns ravaging my son’s spirit.
I picture his anxiety a few different ways—a snake winding around his heart, a wolf with yellow eyes and long, pointed fangs.
Research tells us that anxiety is a feeling of worry, nervousness, or unease, typically about an imminent event or something with an uncertain outcome.
Unfortunately, research is black and white words on a paper. It doesn’t capture the details. There is no color.
Yet anxiety is nothing but color—a wild blue, an angry red, a mournful yellow.
It is a trip the beach, ruined because the seagulls might bite.
It is a soul-crushing fear of the wind chill factor.
It is early morning wakening, and late-night restlessness.
Is a no before yes, refusal instead of curiosity.
This is anxiety.
My son has no friends.
I don’t mean that in the casual, he has like no friends! kind of way.
I mean has no friends. Not a single person to call, or confide in, or meet for tacos at Chipotle.
He tells me his teachers are his friends. They may see it differently, of course.
Who cares, right?
I do. I care.
It’s not like I have a million friends. I don’t. But the few I do have are loyal, and generous and honest. They know me better than anyone. I lean on them when I feel lonely, or when I argue with my husband. They don’t always take my side. Which is perfectly good, and right.
We laugh a lot. We have lunch together, and see movies, and talk until our throats are hoarse.
I want this for him. I want companionship, and laughter.
Before COVID, my other kids bounced in and out of the house like ping pong balls. Play dates, sleepovers, pool parties.
Jack is always home. That’s the thing. Autism and anxiety keep him in a gilded cage, like a complicated, exotic bird.
Except instead of a tropical destination with palm trees and a warm breeze, his cage is inside our family room, or sitting at the kitchen counter.
He has no friends. I don’t know what to do about this. I suggest getting together with kids from his school and he shouts no at the top of his voice.
He wants to stay behind the golden bars. He feels safer there. He doesn’t need to worry about judgment or shame.
This is anxiety.
Do you know how hard he works? Can you understand what it’s like to wake up by 5:00 every morning, convinced the air might freeze you, or world will bite you?
This exotic bird of mine perches on the branch of fight or flight—ready to stay or to fly off to the sky if a car backfires or someone drops a dish.
He reminds me that on March 28th, 2013 we went to Target and a blue Prius almost hit us in the parking lot and now he scans the spaces every time we go, watchful and expecting.
Anxiety is an everlasting memory of badness.
Jack’s particular brand of anxiety requires medication. Three different kinds, if I’m being honest.
I want you to know how hard we worked to find other alternatives to pills in a vial. I want you to know this because I feel defensive, and ashamed.
I feel ashamed every time I drive up to the window at Walgreens and sheepishly announce, “Hi! I have a prescription for Jack Cariello? Or maybe it’s under John?”
I feel ashamed when they ask for my license, because one medication in particular requires identification in case I try to sell it or take it or share it or whatever.
When the person in the window asks for my license, what I really want to say is I love him and I tried. But I could not conquer the wolf .
But these pills in orange vials bring my boy some relief. They grant him rest, and respite from the thoughts that circle his electric brain.
This is anxiety.
Raising this son with autism is a little like building a boat while you steer it across the wide, blue sea.
There are no rules.
There are not shortcuts.
Please, I want to say to the wolf, to the snake, to the living thing that controls my son.
Please, let him breathe.
For just a moment, let him feel the sand beneath his feet. Let him see his breath in the winter air, and taste salty tortilla chips within a circle of laughter.
Let him be.
Tracy Branchaw
August 31, 2020 @ 8:26 am
Hi Carrie. I have 2 nephews with Fragile X-they are 14 and 16. I’ve been reading your blog a couple of years now. Every time you post, it helps me understand them just a little bit more. They have 2 magnificent parents and 2 sisters, so their family is not so different than yours. I also work at Trader Joe’s where I see a lot of kids. Your writings also help me reach out (as best I can) to those kids with autism and their parents. I just try to make their day one bit happier. I know which ones will accept stickers and which ones I can only say hello to. I just want to say thanks for opening up your heart and life to those of us who need to keep trying to understand the life of autism a little better.
Carrie Cariello
August 31, 2020 @ 4:21 pm
Thank you, Tracy, for reading.
terismyth
August 31, 2020 @ 12:57 pm
I hear your sadness. I hear your acceptance. It’s a journey. You’ve never responded to any of my comments, but I’d like to believe you read them.
Both my boys suffer from anxiety. The older with ADHD can barely hold a job. The younger with Autism/Aspergers is terrified of Covid right now, he barely leaves his apartment. For months now, these boys (who are grown adult men now) are struggling with this crippling disease of anxiety. Both need medication, yet a mom can only do so much. At least you have helped your son Jack with this part of life.
Being a parent is hard. Yesterday , my son Andrew the younger one wanted to make sure I don’t worry too much about him. How sweet is that? Well, when we didn’t hear anything for a month- No texts, no calls returned, no email. We did worry. It’s natural. I had help from a Word Press friend Angie who helped me understand that he would be okay. He would reach out when he needed to. And eventually, he did.
Hope you take care of you Carrie. We are all here cheering and praying for you.
Teri
Carrie Cariello
August 31, 2020 @ 4:22 pm
Teri, thank you for sharing some of your own story, and seeing parts of yourself in ours. XOXO
terismyth
September 1, 2020 @ 1:22 am
Yippee! Happy to hear from you.
Honestly, you are a great mom and Jack will find his way.
You are brave to share your story.
We are all in this together.
Much love
Teri
Maureen
August 31, 2020 @ 5:37 pm
I can so relate. When we decided to put our son on Prozac a year ago I felt shame and defeat and soon it turned into the best thing we ever did. I felt regret in not doing it sooner. It was life changing for him and in turn for us. As I went to get his first prescription I remember thinking I was the only parent ever in the history placing their child on an anti-anxiety, antidepressant. That sounds ridiculous but people don’t openly talk about it. Once I started being open about it and he did too (we call it his worry help medication)so many started sharing their story. We need to end this shame of placing children on medication especially medication that regulates their brain/emotions/nervous system. Like so many say; if he/she had diabetes we wouldn’t hesitate. Thank you for being open about it and breaking the stigma : )
susie vanderkooij
August 31, 2020 @ 6:57 pm
Thank you…Thank you for all you do for us Moms out there who feel just the way you do…please leave him be just for a day, right? We just started trying to reach out to “friends” I always said and believe one day Jack and Adrian will meet….in the meantime they could write or email? Adrian is so incredibly similar to Jack, same age, so many other things I have read over the years about Jack, and I feel like I am reading about Adrian….
Thank you, please know you can reach out to us anytime, you and Jack are a household name here and we would love to be friends with Jack….Cheers!