Last Sunday was the kind of day we New Englanders have been waiting for all spring. Beautiful and sunny, with a cloudless blue sky.
Maybe you’re wondering what I did on this lovely day. Did I take Wolfie for a long walk? Read on our front porch or play badminton with the kids? No, I didn’t do any of those things. Instead, Jack and I went to the movies. You know, just the sort of activity you want to do on the first nice day of the season.
At exactly—and I do mean exactly—11:31 am on this gorgeous day, I was driving to a 12:00 showing of Maleficent because I promised Jack I would take him to see it as a reward for wearing his eye patch regularly.
(Note: Regularly looks something like this:
Me: Jack, time for your eye patch!
Jack: I HATE THAT EYE PATCH! I will go blind from it.
Me: WEAR IT.
Jack (stomping and grumbling): I don’t know where it is.
Me: It’s in the SAME SPOT it always is! Get it out and put it on!
Jack: No. NO! No!
Me: Do you to be blind in your left eye FOREVER? Just wear it and get it over with!
Jack (on the floor): I HATE EYE PATCHES!
This exchange happens, oh, I don’t know, every afternoon of my life.
So, as soon as he figured out when Maleficent was going to be released, he began his campaign. He looked up all the times and figured out how long it would take us to drive to the theater and decided which day we should go. And then he began to pester me, following me all over the house and leaving notes on my computer and asking over and over if we could buy the tickets. This started in May.
Now, when you casually agree that you will take your ten-year old son with autism to see Maleficent on Sunday, June 1st at the Chunky’s Theater in Nashua, you are going to that movie no matter what.
New Hampshire could be graced with the first spectacular day of the season, and at 11:30, you will be passing bikers and runners on your way to a dark, musty movie theater because you are going to that movie.
A rainbow-hued unicorn could come prancing up your driveway handing out chocolate coins covered in gold foil, and you are going to that movie.
Angelina Jolie herself could call your cell phone and tell you, “You know what? That movie I just made? Not so great. Why don’t you stay home and read in the hammock instead?” But nope! You are going to that movie.
He came into my room the afternoon before, where I was folding laundry, and announced, “Nineteen more hours until Maleficent!”
“Uh huh, Jack, I know. But it’s going to be a beautiful day. Maybe we should—
“Now. What will you wear to see it. Where something nice,” he called out from inside my closet.
“What? Get out of there! Stop going through my clothes.”
To tell you the truth, I love movies myself. I love to curl up in my chair with a big bag of Twizzlers and laugh at the comedy and guess at the endings and cry in the dark. I cry for a sister who freezes castles and boxers who triumph and when Batman flew off into the horizon after he saved Gotham City.
I cried so hard at Losing Isaiah when Jessica Lange had to give Halle Barry adorable little Isaiah because the courts decided she was his rightful mother that when I walked out of the theater with my sister, the front of my shirt was wet.
I watched Rocky III so often as a kid that I know every word. Just ask Joe. We sit and watch it and I can recite every single line for every single character. As you can imagine, this is not annoying at all.
“We got everything but the truth. What’s the truth, dammit?”
“I’m afraid. You want to break me down? You want to make me say it? I’m afraid.”
(Scene between Rocky and Adrian on the beach after Rocky lost the race to Apollo.)
Like many kids on the spectrum, Jack loves movies and television. Back when he was about eighteen months, the only thing that soothed his incessant whining and fussing was Baby Einstein movies. When he was a toddler, some of his first phrases were scripted from Little People videos. He begged for television and DVD’s constantly, and eventually learned how to shove the discs in the player himself with his chubby little hands.
I remember one time our family went to the Boston Aquarium for the day. We’d just moved to New Hampshire, and Jack was about three years old. We were walking around the giant glass column in the center of the building, and he looked up and saw a television screen mounted on the wall. His face lit up and he started to chant “Movie, movie, movie.”
A sick feeling had washed over me. We were surrounded by penguins and eels and giant sting rays, his two brothers were squealing and bounding from exhibit to exhibit, and all Jack wanted was to watch a movie. It’s as though he was always looking for a script to live by; a cast of characters to play the real world out for him.
Although to be honest, as he continues his journey of understanding his diagnosis and the oh-so-fun game of which one of us is not like the others, I’ve wished for my own script to follow. Last week he asked me if he had a disease, if he could die from autism. I mean, what do you say to that? Where do you begin? I can’t help but think Steven Spielberg would have the answer.
But, to my knowledge, there is no movie called, “No It’s Not a Disease It’s Autism It Means Sometimes You’re Inflexible and Rigid and You Tip Over Kayaks But We Love You Anyway.”
That would be way too long of a title anyway.
I’m not very familiar with fairy tales, but from what I gathered, Maleficent is a remake of Sleeping Beauty. A queen is betrayed and casts a spell on the king’s daughter, plunging her into a deep sleep on her 16th birthday, and she will only wake with a kiss from her true love.
Jack was quiet for most of the movie, absorbed in his popcorn and the plot. But when the pivotal moment came, and the prince leaned over the princess asleep on the bed, Jack too leaned over in his seat. Fervently, he whispered, “Kiss her. Kiss her.” His eyes never left the screen.
Once again, I cried in the cloaked darkness of the theater. But this time, instead of crying for Maleficent or Elsa or Isaiah or Rocky, I wept for a boy named Jack.
I wept for a boy who is confused about autism and who he is and what he has, but longs for a life just like everyone else’s, full of bright hearts and first kisses and good eyes and movies on Sunday afternoons.
I also wept a little bit for myself, because I too am confused about autism and sometimes it seems like nothing has changed and yet everything is different and it’s not really getting any easier. I wiped away tears thinking about how much I want for him, a full heart and a first kiss and a strong left eye, but I’m not sure how to get him there.
I’m afraid, and that’s the truth, dammit.
When the movie was over we walked back outside and squinted at each other in the bright sunlight. He held my gaze for the quickest second. “Maleficent. It was good. The queen loved her. She woke the princess. Not the prince.”
I agreed, and smiled to think how he noticed this new twist in an old story. And grabbing his hand as we crossed to the car, I realized Steven Spielberg probably wouldn’t know the answer about autism anyway, because the truth is the script is ours to write.
Jack’s and mine.