“My Son has Autism”
My son Jack’s latest thing is Redbox. You know, the big red box at the front of the grocery store where you can rent movies?
For over a year he wandered over to it when we stood in the checkout line, and he pressed his nose up against the screen to read all the titles. It kept him busy and I could still see him from where I unloaded the cart, so it seemed harmless enough.
And it was. Harmless. That is, until I agreed to let him actually rent a movie. Then, the very thing that was a harmless pastime blew up in my face like a lead zeppelin.
It was as though I’d spawned the devil himself in the name of movie rentals, because like anything with Jack, we can’t do it just once.
Now we have to do it every time we go grocery shopping. Every single time. Every time. Every every every time.
“Can we do Redbox. Redbox.”
Last week I needed to run to the store for about three things. The second I tried to slip out the door, Jack—the child we once thought was hearing impaired because he never answered when we called his name—came running down the stairs.
“Redbox! I will for come with you. To get for. Shaun the Sheep.”
It didn’t matter that he’d already seen this movie—twice. It didn’t matter that it’s a cartoon movie about a bunch of sheep on the run from their farmer and it’s better suited to a six or seven-year old and he’s almost twelve.
I swallowed the familiar lump in my throat and agreed that yes, he could rent the movie as long as we did our shopping first for just the handful of things I needed; apples, ice cream, and breadcrumbs. No pink frosting, no weird Funfetti cakes, no maple syrup.
For the most part he kept up his end of the bargain, and after about fifteen minutes we headed to the front of the store. He rushed off towards Redbox, and I got in line with the cart.
I was looking over the magazines when I heard a rising wail, like the crescendo in an out-of-tune orchestra. The woman standing in front of me looked up quickly, searching for the source.
I knew the source. I knew the song.
I pushed my cart aside and rushed to where Jack was standing, screaming and hitting his own head. From a few feet away I saw there was a sign taped crookedly to the front of the box. As I got closer, I could see the sign more clearly. It said “Out of Order.”
Redbox was broken.
“Shaun the Sheep. Shaun. The SHEEEEEEEP!”
I have been doing this for a thousand years. I have been warding off tantrums and explaining this boy and watching people’s head snap up when they hear his screams for exactly one thousand years.
The tiniest voice crept up from the dirty tile floor and traveled through the soles of my feet, the length of my body, and into my ear, “How did I get here?”
I don’t like to listen to that voice very much because it doesn’t to me any good. It doesn’t change anything. It is useless, and it’s usually followed by why me and it isn’t fair.
But standing before the giant red box with my red-faced boy, I thought it again.
How did I get here?
I know plenty of people who would be better suited for this job, who would know how to graciously explain that the Redbox is simply not working. They would seize the moment as one to teach, to inspire, to educate. Maybe they would throw in a lesson about pulleys and levers and supply and demand, who knows.
I was not this person. I was tired. I was hungry. The ice cream was melting in the cart and I still had to put dinner together and check homework and make sure everyone’s snow pants were dry in case they had outdoor recess the next day.
I thought about all the decisions I’d ever made and even the ones I didn’t—the ones that seemed to make themselves when I wasn’t looking and yet still landed me in this exact spot.
I thought about all the things I’ve said and the things I didn’t, the questions I’ve asked and the answers I’ve given.
How did I get here?
If I were to re-trace my steps, it would look something like this.
“I can never marry you. Then I would be Carrie Cariello!”
“Hi, my name is Carrie Cariello and I need to make an appointment. I may be pregnant.”
“Let’s name him Joseph, and we’ll call him Joey.”
“Honey? Can you get up here? It says I’m pregnant again!”
“John. John Michael, but we’ll call him Jack.”
“Something is wrong. He never sleeps, he never looks at me.”
“I can’t explain it. I have a pit in my stomach all the time.”
“I’m tired.”
“I’m worried.”
“I’m scared.”
“Hi, my name is Carrie Cariello and I think I need to make an appointment for my son.”
“Honey! Guess what! I’m pregnant.”
“Charles Patrick, and we’ll call him Charlie.”
“The report says delays in speech, language, cognitive flexibility, and executive functioning.”
“The report says he lacks joint attention and he has problems with sensory integration.”
“The report says he doesn’t make eye contact.”
“The report says autism.”
“I hate this report.”
“Honey. Wake up. Are you awake? I’m pregnant again.”
“It’s a girl. We have a girl! We’re going to call her Rose.”
“Honey. I told you to keep that appointment. Why? Because I am pregnant again.”
“His name is Henry, Henry James Cariello.”
“Yes, there are five of them.”
“Yes, they’re all mine.”
“Yes, I do know how these things happen.”
“Jack, look at me, look in my eyes, point to the bird do you see the bird where’s the bird?”
“Jack, the oven is hot. It’s hot, do you see, it’s hot don’t touch.”
“No, Jack, no more Baby Einstein no more let’s play with trains let’s look at this book come sit with me, sit down.”
“No, we don’t bite, Jack.”
“No Jack, no hitting. Stop hitting me.”
“You have to stop screaming, please stop screaming just calm down take a deep breath.”
“Quiet body, quiet body, quiet body, ssshhhhh.”
“I can’t do this for one more day. I am just so tired it is so hard I can’t take it.”
“I had to drag him out of the grocery store because he was screaming and throwing himself on the floor.”
“He ran away from me in the mall and I couldn’t find him. My God, I thought I’d never find him.”
“He’ll only use the red cup.”
“He’ll only sleep if I hold him.”
“He never says a word.”
“Yes, Joey, it’s true what they said. Your brother does have autism.”
“I don’t know if he’ll ever get married.”
“I wish I could answer you, but I can’t say if he’ll ever be a father.”
“I know you will, I know you’ll take care of him.”
“Hi, my name is Carrie Cariello and I’m here for the IEP meeting.”
“Hi, my name is Carrie Cariello and I’m calling about your adaptive program.”
“Hi, my name is Carrie Cariello and my son has autism.”
“Uh, he likes to lick the counters a lot. We’re working on it.”
“Sometimes he swears when he’s upset, but we’re working on it.”
“He jumps and grunts when he’s nervous, but we’re working on it.”
“We’re working on it.”
“Yes, we’re working on it.”
“Of course, we’re working on it.”
“We’re trying to help him be more flexible.”
“We’re trying to help him sleep.”
“We’re trying.”
“Jack, you have something called autism.”
“Jack, one more math problem, I know you can do it.”
“Jack, calm down, quiet your body, shhhhh, quiet body.”
“Jack, it looks like it’s out of order. That means it’s broken. Redbox is broken. I’m sorry, buddy.”
I guess the question is; how do any of us get anywhere?
Romance, dumb luck, chance and fate and wonky genetics.
Phone calls and meetings and evaluations and tantrums.
The fact is I am here. I am washing snow pants and cutting up apples and rotating the blue cup with the red cup, and every step is a step closer to something even if I’m not exactly sure what.
This is everyone’s life. This is everyone’s autism.
It is a thousand years of desperate moments and quiet triumphs strung together like Christmas lights without a season. And all at once, someone flips the switch, and the world is incandescent and bright.
“Ok. For Mom. OK no Redbox tonight. Next time.”
January 18, 2016 @ 10:28 am
You got me at “we’re working on it” I was crying and laughing at that point. That’s the refrain in our house – “we’re working on it”
Don’t even know what that means, exactly. Who’s we? My kids are the ones who are actually working on it (whatever “it” may be at that moment) – I cannot begin to fathom what that work really entails. And every time I think I do one of them will say something that reminds me again just how little I understand…
January 18, 2016 @ 10:39 am
As I sit here in the waiting room of the car repair shop, reading your post on my cell phone, with every word you write, I am travelling back in my mind. To yesterday. Last week. Last month. Last year. The licking of counters (my 8-year-old daughter prefers licking the freezer doors at our local grocery store), followed by “we’re working on it.” Baby Einstein. Renting the same videos multiple times from Redbox. “Phone calls and meetings and evaluations and tantrums.” I have yet to utter the words to my Rebecca: “…you have something called autism.” But it’s coming. I both welcome and fear that moment. “This is everyone’s autism.” Thank you for sharing these moments. For letting us know we’re not alone. And I am certain you’ve heard these words countless times from others, but I hope you know –REALLY know –that you are not alone, either. The tender, painful, beautiful moments you share with Jack are yours alone. But in those moments, I pray you will remember the unseen faces out here, silently supporting you. Thank you so very much for sharing with us.
January 18, 2016 @ 12:59 pm
Oh Carrie, I get it all. Thank you for being so honest.
January 18, 2016 @ 6:28 pm
Ditto, ditto, ditto!!!!
January 18, 2016 @ 6:55 pm
I love love love your writing. You always hit it just right. Autism may be different for everyone but sometimes it’s the same. Thank you for that.
Sharon M.
January 18, 2016 @ 7:05 pm
You are such a gift; I feel related to, and heard….I feel calm knowing you and Jack are in this world with us…..thank you, for writing so beautifully and nailing another incredibly familiar experience………Jack and Adrian are so much alike!!!
January 19, 2016 @ 11:30 am
Thank you so much for writing this post. I also have been there a million times, and I am feeling anxious just thinking about it. What adds to my personal anxieties lately is that I have been reading several blogs/posts by adults on the autism spectrum who write about the way sensory sensitivities and sensory processing differences affect their everyday sensory experiences. It sounds very, very challenging, and I now recognize that many of my daughter’s behaviors may be a way to avoid or drown out sensory discomfort or even pain (e.g. she experiences it as painful when the water of the shower hits her head, at warm or cool temperatures, set at the least powerful level; or the other day, she said she could not play air hockey because the plastic score board was asymmetric and made her feel “lopsided”; or the time she tried to get out of a therapy session because the therapist’s shirt had a pattern that made her “dizzy”; or when she had a meltdown in her class (before homeschooloing) because the freshly copied papers from the copy machine felt “hot”; or the day she had a mega-meltdown after a paper towel that to her felt like “sandpaper” (it was used after an echocardiogram). I could go on and on because lately she has been more and more able to verbalize these experiences (never during a meltdown though; then everything shuts down for her and she can neither receive my input or communicate what’s going on). Anyway, in our case, I am going to try sensory integration therapy. Occupational therapy helped her so much, but then she “graduated” (at age 6; 5 years ago). I am beginning to wonder if it helped her so much because they were addressing sensory issues. Now that my daughter can explain some of her experiences better, it makes me wonder if some of the sleep issues she had as a baby/toddler were related to sensory issues. Were the sheets too “rough”? The clothes too “scratchy”? To this day, she experiences a lot of sheets and clothing, that most find nice and soft, as rough. Except now she can tell us. And now, I understand what may cause some of her anxiety issues. -As far as the issues with the movies goes, Jack may actually be learning something or maybe he gets comfort out of repetition. Please don’t feel bad about Shawn the Sheep and movies that seem to be made for younger kids. I know several neurotypical adults with high-stress jobs who actually watch animated movies at the movie theater because it allows them to retreat to a much more peaceful place for a couple of hours. I guess it could be considered a coping skill. Maybe our kids also see a message in these movies (e.g. about loyalty, family/friendship, or forgiveness), that the younger kids may miss, and that our kids may relate to. Frozen was one example in our household. My daughter immediately related to Elsa and still sings “Let it go” whenever she hears it (just a few days ago at a toystore; stood in the middle of a busy toystore singing as loud as she could). She knows the lyrics to all the Frozen songs. Makes me cry every time when she sings “Conceal, don’t feel” or the ending of “Let it Go”: “The cold never bothered me anyway.” I guess it gives her comfort to know that she is not alone and that things may get better for her as well.
January 19, 2016 @ 1:16 pm
I just asked my daughter to remind me about the Shaun the Sheep plot. She loved the movie, too. I had forgotten the plot, but now I remember. It’s actually a pretty smart movie. Spoiler Alert!!! Please do not read on if you want to see the movie for yourself.
The farmer in this movie starts his life when he and his animals are young and they all love each other and they are very happy. Gradually, he forgets how much he loves them, and their daily life becomes a dreaded routine. The animals also become unhappy with their lives and try to get a day off. They create a series of distractions and the farmer ends up in an accident. He is brought to a hospital in the city and wakes up from his accident with memory loss. He does not remember his animals and starts a new life in the city (as a barber to the rich and famous based in the way he cuts hair…). In the meantime, his sheep want him back and they go to the city. To make a long story short, some events bring back some faint memories, but since he cannot place them, he seems to perceive it as a yearning for a better life. In the end, when his sheep are at risk of dying, he sees a reflection of him in the window with the sheep around him, which suddenly triggers his memory.-So, in this movie, he first forgets how much he loved the animals, then he has actual amnesia, and then the first thing he remembers when his memory comes back, is how much he loves them. Wow, right?
January 19, 2016 @ 8:47 pm
Jack is making progress. So proud of his red box acceptance moment!