All is Calm
When I was a little girl, I swore I heard your sleigh land on the top of our roof.
I must have been about four years old, five at the most. When I said this—that I knew you had come in the night because I heard your sleigh and your reindeer—my father smiled a funny smile. He turned away with his hand over his mouth.
Back then, I wrote you long, elaborate lists and asked for all the things I wished for—books and lip gloss and when I was older, maybe in the fourth grade, those nylon pants with the zippers. We called them parachute pants, and I wanted a pair in black to go with my white suede ankle boots.
(The boots may or may not have been real suede.)
Now, I’m a mother, and I want different things; things you cannot fit into a box and wrap up with red paper and a sparkly bow and leave underneath the tree.
I want more time.
I want more patience.
I want to understand autism.
Do you want to know what I am doing right now, Mr. C.? Right now I am sitting in my office listening to my 12-year old son Jack whirl and scream and shriek because my husband Joe took away his ITouch after he said a big terrible bad word in the shoe store today even after we have warned him for weeks and weeks to stop saying big terrible bad words.
He’s really wound up tonight. He’s pissed as hell, to put it bluntly, and he’s standing at the top of the stairs screaming odd, disconnected phrases.
“I want. FOR MY OWN LIFE!”
“The Ped Egg. Gets rid of DRY CRACKED skin.”
“I just want to be. Your EVERYTHING.”
This thing that he does, where he repeats lines from commercials and movies and bad TV shows, it’s called scripting. It’s part of his autism. He does it when he’s very upset or stressed out or mad, and he can’t find the words he needs to tell us what he’s really thinking in that complicated mind of his.
He scripts a lot. Like, a lot a lot.
I hate it.
I know, I know, I shouldn’t use word hate, but I can’t help it. There are things about autism that I love, and things that I hate.
I love the unfiltered view of life it provides—the glimpse into a world that is so pure, so honest, it takes my breath away.
I hate the repetitiveness and the way he asks me the same question nine-hundred million times an hour.
I love the way he glances up at me and smiles really fast when I call him my Jack-a-boo.
I hate the scripting.
I hate it because it’s not a real conversation. It’s not a traditional dialogue, or an exchange of ideas and opinions.
The thing is, I just want to talk to my son. I want to talk to him. I want to sit down with a cup of coffee in my hand while he eats his waffles for breakfast and just chat.
Jack does not chat.
Oh, he gives information, he makes demands, he observes the weather and recites lines from commercials, but he does not make idle conversation.
I want to talk to my son.
I want to know if he thinks the Yankees are better than the Red Sox, and whether cold winter mornings are better than warm summer nights.
I want him to explain to me exactly how it feels when he watches the middle school bus pull up our road and he drops his eyes and looks at the ground and chews his nails because he doesn’t get on that bus anymore. Now he climbs into a small minivan and goes in the other direction to a special school for kids like him even though he hates when we say kids like him.
“I am for. Like EVERYBODY ELSE.”
I want to understand exactly what it feels like to have autism; to jump and stim and rock and worry.
I live with a person whose mind I may never know and whose heart I can’t always understand, yet some days I feel as though I hold his future in the palm of my hand.
Right now I don’t know what to do. I mean, I know he said a big terrible bad word, but he’d had a long day at school and then he went to karate and after that he went to the shoe store for new sneakers even though it was cold out and everyone was hungry for dinner but that was the only time we had all weekend to shop.
And when Joe announced that he was taking the ITouch for the evening after he heard Jack shout the big terrible bad word, we all—me and my other four kids—sort of looked at each other like uh oh that’s not going to be good but we didn’t say anything because we knew in our collective hearts it was the right thing to do.
I have a boy who is not like the others. And even though for the most part this is all fine and good and I’ve made peace with it and all that, every once in a while my breath catches in my throat.
I have a boy who finds language—the very cornerstone of communication—confusing and puzzling and mysterious and hard.
I want to talk to my son.
I want to him to tell me if going to his new school is getting any easier at all or if his heart is still broken wide open.
I want to tell him I hope he knows how hugely, achingly proud I am of him for the way he climbs into his minivan every single morning and how much I love his school picture because he looks so sweet, and so happy.
I want to him to know that for all of the scripting, there is no script.
It’s quiet now. There rest of the kids are in bed, and like a toy running out of power, Jack is slowly winding down to sleep. All is calm, if not especially bright.
In just a few minutes, when I’m done writing this letter, I will walk into he kitchen where my husband stands at the counter. I will stand next to him, and without a word, we will embrace. The storm is over for now, but both of us know there will be many, many more.
Yet with enough patience, and a little time, there is understanding.
“I am sorry. For the bad word. I was the maddest.”
December 12, 2016 @ 12:19 pm
We know the embrace after the storm. Thank you for sharing your heart. This is a tough road we are on.
December 12, 2016 @ 1:30 pm
Thank you Carrie, for opening these wounds and sharing with us all the beauty of your love and wisdom of your understanding. God bless you.
December 12, 2016 @ 2:41 pm
I enjoy your blog every week, and think you are a gifted writer. I feel that our family had to learn many things the hard way, and I wanted to share a couple things in response to your blog because of that. Please don’t feel judged. You seem to be an amazing, hard-working mom!
In regards to scripting, it is true that it is not traditional dialogue, but in my experience, it is real communication and an attempt at expressing ideas, opionions, and feelings when access to spontaneous sentences fails because of overwhelming anxiety and other emotions.
Scripting is like using sign language when other communication is not possible. Morse code is considered a form of communication. If I do not know Morse code, all I will hear is a serious of strange knocking sounds. I recently read that Thomas Edison proposed to his deaf wife in Morse code. She knew Morse code, and thus, the meaning of the message did not get lost on her.
Maybe Jack was saying that he wished he had more control over the things that happened to him when he said he wanted “for his own life”. Perhaps, he wished he could fix things and take back what happened when he scripted about the cracked skin remedy. Maybe he wishes to be “your everything” as in the song, but perhaps feels like he may be failing you. Sometimes, if we don’t understand the script, it helps to ask, after the storm has passed, what the other person was trying to express with certain scripts.
Scripting is an opportunity to understand our loved ones better. I find scripting is an opportunity to get answers to the many questions we may have in regard to how our loved ones feel. All I have to do is listen closely, ask questions, and join in when possible. Scripting offers access to somebody else’s world when traditional dialogue is not feasible. Neurotypical folks script all the time. We quote Shakespeare to show romance or that we are well-read. We quote movies to be funny or clever or both. I believe that when neurotypical folks script, it is every bit as an attempt to connect and to communicate as when an individual on the spectrum scripts.
And lastly, on a separate note, online shoe stores have been a life saver for us. I end up ordering a couple of sizes and styles, and send a lot of the shoes back, but it has decreased stress for all of us in a tremendous way. Now, we go to the shoe store when we do not have to, on the weekend when we are not stressed, just so that my child learns how to navigate shoe stores and malls. However, we did not come to that conclusion over night, and have awful memories of meltdowns at the mall.
December 12, 2016 @ 9:39 pm
Ah. You know, I read your story like I was listening to you speak. I don’t even know you, but what I think is the coolest is your son speaks like the transformer bumblebee. Your story made me smile at just that moment, even before you called it scripting. Bumblebee is the favourite transformer in our house…our son almost peed his pants when we saw a bumblebee car driving in the city… I think your son is amazing, in that, he found a way to communicate how he feels. I read success… take care always. Thank you for your story.
December 14, 2016 @ 10:43 pm
I think that is the best school picture I have ever seen…it is perfection! Jack’s countenance is positively radiant and nearly moves me to tears! Seriously the sweetest.
I can relate to what you mean about wanting to “talk to your son” because I feel the same way about mine. It’s a hard thing to explain to many people… wishing that verbal communication barrier would disappear, if even for just a moment…whether that means I learn to speak his language or he speaks mine, doesn’t matter to me…
To have the ease of communication is truly a gift so easily taken for granted. When I have hard moments or long for that barrier to fall, I remind myself that one day it will be lifted. Maybe not in this life, but most definitely in the next, and when that moment comes I’m positive that many of us will stand in awe of individuals like our sons and all they have taught us. Thank you for sharing your journey, and most importantly, for sharing your Jack. You both have taught me so much!
December 15, 2016 @ 12:18 am
Thank you so much for sharing your story. We all have “our” story but no one really understands until you live with Autism. We navigate every day hoping for the best. Usually if it was a good school day and I didn’t get a call or an email from the school, I sigh with relief. We are in line for an Autism Service Dog and the comfort and companionship I ache for my 12 yr old son will be hopefully relieved by this trained 4 legged friend. Our hopes are wrapped in helping our child in any way bc when they hurt we hurt. We can never give up, never give in, never say never, our boys depend on it!