It’s Never About the Cup: An Honest Holiday Letter
Season’s greetings, friends and family!
I am happy to report the Cariello family had a wonderful 2018. My husband Joe and I are doing well, and all five kids are happy, healthy, and active.
We now have three teenage boys in the house. They eat like you can’t even imagine.
The other day I snapped at my 15-year old for eating an apple. That’s right, ladies and gentlemen, he was eating an apple and I got annoyed. It was an all-time parenting low for me, and I assure you, I have had plenty of parenting lows.
The thing is, I had already bought two dozen apples that week, and we were down to three, and I didn’t want to go back to the grocery store for what felt like the hundredth time.
Our daughter, Rose, is eleven. She is in sixth grade. She hates changing for gym class. I worry about her constantly.
Our youngest, Henry, is nine-almost-ten. He is wonderful! So spirited and full of life.
Actually, he can be a little, uh, bossy and lately he’s obsessed with Star Wars and the phrase “oppositional defiance disorder” has been bandied about, but I’ve pretty much ignored it because I am sick to death of labels.
As you may remember, our second son Jack has autism.
It’s going great! He’s making so much progress.
Actually, it’s not going that great.
There is not much progress.
He is obsessed with Mary Poppins and he won’t stop telling me he prefers Pepsi products over Coke and he talks to himself constantly.
If I’m being honest, lately I dread the afternoons when he’s home from school because it’s so hard to keep him busy. He basically wanders around the house while I drive my 13-year old to basketball and my oldest son to his stuff and try to get Henry to work on his math facts.
My 14-year old son has absolutely zero interests and this depresses me more than I can say.
There is no one to blame here, can you see that?
I have tried blaming him, believe me. I have tried telling him to stop talking about soda over and over and it doesn’t work.
I have tried blaming autism.
Nothing changes. Nothing is changing.
He is not getting any better.
Some days, it actually feels like he is getting worse.
We are running out of time.
It is a slow, gradual process, this spectrum disorder. It’s kind of like chipping through a glacier with your bare hands. It’s cold, and hard, and lonely.
I say he has autism about fifteen times a day.
I say it when we have an electrician to the house to fix the lights on the patio and he says hello to Jack and Jack doesn’t answer him or even pick up his head.
Oh, sorry. He has autism. Jack! Jack, say hello.
I say it to the server in Applebee’s when he asks Jack how he wants his burger-with-no-lettuce-or-tomato-or-pickle cooked and he says he wants it cooked on the stove.
Oh! He has autism. Jack, tell him you’d like it cooked medium.
I say it on the phone whenever I have to make an appointment for the eye doctor, or a new specialist, or a haircut.
I just want to let you know, he has autism.
I often ask myself how something so precious and reducible and diagnostic can be so complicated.
He has autism.
He is rigid.
He is literal.
He is very, very anxious.
He hates loud noises, and he uses self-stimulation, or stimming, to regulate his body. Once his body is regulated, he is better able to take in information and process it. This involves a lot of jumping.
I mean, that doesn’t seem so hard, right? Just let him keep his schedule and wear headphones when we see fireworks on the Fourth of July and give him room to move his body.
But it is. It is hard.
It’s hard because at the same time I give him room to move, I have to consider how to change him—how to help him learn to control the jumping and tolerate unexpected sound and be flexible if dinner is ten minutes later than usual.
It’s hard because his anxiety is so bad, interferes with his life so we have to give him medicine every night.
I know how most of you feel about long-term medication and children. I have sat around enough holiday tables and listened to the argument about how medicine is taking the easy way out and parents should just spend more time with their kids and all that jazz.
But, dear family, if you just lived with this child for twenty-four hours—one single day—you would see the way anxiety catches his breath like a fragile bird inside of a cage. I know you would change your mind. Like me, you would do anything to help free him from the ties that bind his spirit to the gilded bars of fear.
I guess the question is, do I help him fit into my world, or join him in his?
He loves Christmas. He knows Santa isn’t real but he says he believes anyway.
Anyway.
Lately it seems like my kitchen is never clean. Something is always sitting in the bottom of the sink—a knife smeared with peanut butter, a bowl with milk and Rice Krispies stuck around the rim, or a plate with last night’s leftovers crusted to the bottom. It drives me nuts.
I have caught myself screaming at my kids for something as benign as a cup left on the counter. And the whole time I am screaming, I am thinking about how much I love them and why am I screaming about this is so stupid I only have a few years left with these precious human beings.
Or do I?
Do I actually have a lifetime with autism and this tall boy of mine? Do I have a lifetime of peanut-butter knives in the sink and crumbs on the table?
I am overcome with love for them. I want to hug them until our breath is gone and remind them I am so proud of who they are and remind them to use their acne soap.
It’s never really about the cup, is it?
In this tangle of motherhood and teenagers and autism, it is about broken dreams and a conclusion to childhood and new hope and forgiveness.
I guess you could say my day contains a thousand little hurts, and countless surprises, and endless rays of sunshine contrasted against a cloudy backdrop of disappointment.
This is life.
Life is hard.
Life is complicated.
Life is good.
I think the answer is both. About the world thing. I have to do both. I have to fit him into mine and join him in his.
I have never liked jazz.
Wishing you a magical holiday season full of clean sinks, rays of sunshine, and as many apples as you can eat.
Love,
The Cariello Family
