My name is Carrie. I was named after my mother’s cousin. Her other cousin was named Alveena, so I guess it worked out pretty well.
My husband and I have five kids and we live in New Hampshire.
Our 13-year old son Jack is different from most people. This is not a bad thing. It is not negative. It simply is.
These are the things that make Jack a little different: he has significant delays when it comes to speech and language, social interactions, and theory of mind. He also has a tendency to engage in repetitive behavior, overwhelming anxiety, and little to no working memory.
In short, he has autism.
My name is Carrie, and my son has autism.
It’s actually called Autism Spectrum Disorder, but that’s too long to say ninety million times a day when I try to explain Jack to people like the cashier in Sears or the kids on the playground, so I went right ahead and gave it a nickname. I’m really wily like that. I don’t play by the rules.
Let’s break it down, shall we? We’ll start with speech and language. It seems as good a place as any.
I can honestly tell you, there is no one on the face of this earth who is more frustrating to have a conversation with than my son. I don’t say this to be mean. I say it because it’s true.
Jack, what should we have for dinner?
The last time. I ate a hot dog. May 22nd 2014.
Yes, buddy, okay. But how about dinner tonight?
It was sunny out. That day.
Uh huh, sounds nice. Anything you can think of for dinner?
No more talking.
You see, Jack talks about the things that motivate him. This makes him a somewhat poor conversationalist, because if you aren’t in the mood to talk about hotdogs on a sunny day in May, he will literally turn around and walk away.
We’re working on it.
My name is Carrie. My son has autism. We’re working on a lot of things.
Jack’s language delay is also complicated by the way in which he absorbs sound, because he hears background noise and foreground noise at exactly the same level. So, if there’s a garbage truck rumbling past our house when I ask him what we should have for dinner, he can’t sort through the different sounds in his mind and figure out which one to respond to first.
Fun, huh? Just so you know, he usually responds to the garbage truck before my question about dinner. I think this is an insult about my cooking, but I can’t figure out what to do about it.
Limited theory of mind basically means if Jack loves to eat hotdogs in May, but you prefer, say, cheeseburgers, he will think you are crazy. He can’t imagine anyone having a thought, or an opinion, or a belief, that is different from his own. This sort of gets in the way with a lot of social interactions.
Next up in the colorful garden of spectrum flowers is perseverative behavior, or according to Merriam-Webster, the continuation or repetition of something beyond what is desired.
Right now, Jack is completely and utterly preoccupied by a plaza they are supposed to be building in our town. And by supposed to be building, I mean they knocked down a few stores and put up a couple of signs. But somehow, he stumbled upon a website showing the plans for a movie theater, some restaurants, and possibly a bowling alley.
Whenever we pass this vacant lot that is covered in mounds of dirt, my 13-year old boy and I have the exact same conversation.
There will to be. A movie theater.
I know, that will be nice.
And for. A Shake Shack.
This probably doesn’t sound like a big deal—small potatoes in autism’s bushel basket of obsessiveness—except we live in a tiny little town and we might pass those mounds of dirt about seventy-three times a day. This is, in my opinion, is beyond what is desired.
Next up we have anxiety. If repetitive behavior looks like neat rows of bright yellow daffodils all lined up like soldiers, then anxiety is the deep, sticky mud that mires them in place. In other words, it does not let my son move. It grasps him by his ankles and it holds on tight. He is rooted to the ground with worries about the weather, and lately, the color orange.
The thing is, I can’t cure it. I cannot cure what affects my son.
I think, for me, the hardest thing, besides the trying to talk over the garbage truck and assure him we will not have a hurricane in New Hampshire in the middle of winter, is that I can’t figure out how much he understands.
Let me give you an example. You might ask your child what two times two is, and he answers, “Four.” Then, you know what he knows. You can move on to the next set of multiplication tables or spelling words or whatever.
If I were to ask Jack the solution to two times two, he might start talking about a Ferris Wheel he went on one time in New Jersey, or tell me Beyonce has a new number one single. Then he’ll jump around the room and grunt a few times.
And if that weren’t bad enough, there’s always a big long pause between my questions and his answer. This is because of his working memory.
You see, we all have working memory. It’s like a file cabinet in our brains, where we store information so we can access it when we need to and apply it to a situation in order to make a decision.
Jack’s file cabinet it smaller than ours, and apparently it’s kind of a mess. I mean, maybe it’s neat and orderly, but there’s a system in there that I can’t figure out to save my life. If you ask me, he seems to be searching through file folders that have a lot of different things stored inside them. The Ferris Wheel memory got mixed up with math.
Hi. My name is Carrie. Some days, autism takes everything I’ve got. Some days I’m so lost, you wouldn’t believe it.
Living with a complicated child can take a toll upon one’s very soul. I guess that’s what I’m trying to say.
The thing is, I don’t want to talk about hotdogs anymore, or shopping plazas, or beg for answers to a multiplication question.
I want to know if he thinks of spring when he hears birds singing on blue winter mornings.
I want to know if he remembers the time he was five and he had a terrible fever and I rocked him all afternoon while he wept, his face flush and hot.
I want to know if he has a recurring dream when his eyes close at night.
I want to know him.
Oh, I know what you’re waiting for! You’re all waiting for me to say I don’t know everything but I’ll never stop trying and the journey is more important than the destination and this is a marathon and not a sprint and all that jazz.
Of course. Of course that’s all true. But it’s also a cliché, and to be honest, nothing bugs me more than a cliché.
So, I’ll do what I always do when I feel lost. I’ll go back to the basics.
My job is to keep him safe.
My job is to keep him talking.
My job is to teach him about the world, and teach the world about him.
Anything else is superfluous, and unnecessary. It is white noise in a bubble of purpose.
I don’t know everything, but I will never stop trying. That goes without saying. It is ridiculous to think otherwise. I don’t know about the journey and the destination part, but for now I’m going to try a new strategy when it comes to having a conversation with my son.
Constantly, I will ask him why, and when, and where.
I will not assume he doesn’t understand.
I will be interested in everything he has to say.
I will give him time—time to think, time to understand, time to respond.
After all of that, I will do the very thing that comes the least naturally for me—the thing I work the hardest for, the first skill that flies out the window like a bird taking flight when I am nervous, or worried, or frustrated.
I will rearrange the letters, and I will wait.
Mom. I dreamed. The plaza. Was open.
Really! What was it like?
It was. So real. I was walking in it.