A lot of times people ask me if my 10-year old son Jack’s autism is high or low functioning.
And I almost always answer the same way.
“Um, I’m not sure.”
I mean, for the most part, he is high functioning. He talks and carries on conversations and is in a regular classroom and eats a lot of different food and doesn’t mind wearing shirts that have tags sewn into the collar.
But his conversations are more than slightly irregular, he needs a 1:1 aide to get through his day, and he takes medication to sleep at night.
Low? High? Medium? In-between?
He’s also the kind of kid who loves the spotlight. He loves to perform, and he loves an audience.
That’s high functioning, right?
But what he really loves is to be in charge. He loves to have a microphone and point and direct and boss. And you never know what’s going to come out of his mouth.
Not so high functioning.
Take, for example, the vacation we took a few weeks ago. I don’t mean the way he fell while we were standing in line at the airport or how he wanted to pack his weighted blanket or his quest to identify people who use tobacco.
[At the top of his voice, three feet from a man smoking.]
“Stand BACK everyone. That man is smoking a CIGARETTE! He is using TOBACCO.”
I mean that he signed up for the talent show, the one the Caribbean resort held for all the kids who were staying there.
He’s done this kind of thing before. He was a frog in the school play and every summer, he enters the singing contest at camp. In fact, I’ve just barely recovered from the fourth grade talent show last spring, when he screeched Taylor Swift’s Eyes Wide Shut into a microphone in front of the entire school.
But this was not the stage in our elementary school cafeteria. This is not our tiny New Hampshire town where people ride their horses down the street and everyone, even the cashier at Walgreens—especially the cashier at Walgreens—knows Jack and all of his quirks.
No, this was a big stage at a large resort, with an audience full of strangers.
“Really, Jack? Here? You want to do the talent show while we’re here? What will you do?”
“I will bake. Did you bring. The pans?”
I looked at my 10-year old son, tall and sunburned in his turquoise bathing suit.
“Uh, no. No, Jack, I didn’t pack the cake pans for vacation.”
“Jokes. I will tell some jokes.”
“Uh huh, well, do you know any jokes?”
“Yes, I will tell twenty. Twenty jokes.”
“Well, we’ll see. How about five? Can we start with five? Tell them to me now so you can practice.”
“NO. I do not practice things.”
He stalked away, fuming. “To not even. Pack the BAKING SODA.”
It felt as though I was putting an exotic baby bird onstage without so much as a thin, delicate shell to protect him. I am used to his crooked wings and his bird-like hops. But would the rest of the crowd be able to see his beautiful jewel tones, and understand just how hard he works to fly?
For the first time, I could not pave his way. I could not prepare the audience for him.
They won’t know that about fifty percent of the things he says are scripted from movies and television, and how every time we pass a newborn in a stroller, he mumbles, “My goodness, how that baby has grown.”
They won’t know how much he looks forward to something called Snack Shop in school on Thursdays—when the class gets to buy ice cream after lunch—and the way he carefully folds his coveted dollar bill into the front pocket of his backpack on Tuesday night.
“Two days. Two days until ice cream for Snack Shop.”
No one in the audience will know how confused he was when the privilege was taken away because some kids were caught throwing food.
“But Snack Shop. It is for me gone. But I did not throw that food.”
They won’t know how much he loves Oreos, or that he wants to be a baker when he grows up, or how loud he can scream when he’s having a tantrum.
I guess what I’m saying is they won’t know he has autism.
And if they don’t know he has autism, they’ll just think he’s weird. The kids in the audience might nudge each other and smirk, while the grown-ups will squirm uncomfortably in their chairs and check their watches and silently wish he would get off the stage.
I know what you’re probably thinking right now. Who cares, right? Let him go on the stage and tell his jokes! Who cares if he looks different? Different is great!
Yeah, I used to think that way too—until different meant my own son.
I mean, obviously I love different. In our house, we celebrate different. But sometimes, different means more than just unusual or uncommon or not like the others.
In instances like this, different means vulnerable. It means fragile and tender and precious.
In instances like this, I celebrate him, but I also have trouble quieting a deep ache inside my soul.
Is it my job to be the shell; to fold around him and keep him safe from jeering or humiliation? Or should I push my baby bird out and into the world, and cross my fingers and pray he can fly?
That night of the show, Joe and I sat together amongst the two hundred or so other people in the crowd. After about eight other acts, Jack strolled on to the huge stage. Although he stood tall, to me he looked so small.
He started with his traditional, “Okay, okay, okay.” He seemed nervous.
He introduced himself, and explained he was there to tell some jokes. He mentioned he memorized them in his head, and would NOT be reading them out of a book like one of the other contestants did before him. Nor would he be reading a poem.
He shushed the audience when they got too loud for him.
And then, well, he did something unrehearsed. He pulled a Phil Donahue, and starting waltzing into the audience to see if they knew the answers to his riddles.
I was standing in the aisle, taking video with my phone, and I did not know what to do. I looked over to Joe, who was halfway out of his seat. The poor DJ looked confused, and started to follow him around the stage.
But Jack? Well, Jack was in his element, calling on people and bringing them the microphone and hopping back on the stage to reveal the answers.
Watching him, I at last understood that it doesn’t really matter how you or I or an audience in the Caribbean see him. It only matters how he sees himself.
On this night, Jack saw himself as funny and interesting and brave.
Just like I do every single day.
And the audience, well they clapped and cheered and rooted for him.
Just like I do every single day.
Neither he nor they cared that he had autism.
But I do. Every single day.
If I could go back and tell the audience one thing that night, I would say this:
Thank you. Every time you clapped and cheered, I remembered that my son is more than high or low or medium on a spectrum scale. He is more than autism.
He is precious and vulnerable and tender and strong. He is spirited and courageous, and also quite the joke-teller.
He is Jack, and he is flying.
(Check out my Facebook page to see the video of the entire performance.)