Every Christmas, my husband and I watch one of our favorite movies: The Holiday. It’s not really a Christmas movie per se, but the setting is a mixture of London and Los Angeles over the holiday season, so we always work it into our schedule.
There’s a scene in The Holiday that always stands out to me. Iris (Kate Winslet) finds out that Jasper, the man she is hopelessly devoted to even after he breaks her heart, proposed to one of their coworkers. Iris goes home from work after the public announcement, puts on sweats, and sobs into her sleeves while brewing some tea. The part that gets me is when she takes the pot off the stove. She stops for a minute, then leans over to inhale the fumes from the gas stovetop as if she’s realized she has no reason to live. After about two inhalations, she blurts, “What am I doing?” She turns the knob on the oven, opens the window, breathes in the fresh winter air, and slaps herself, saying over and over, “Low point. Low point.”
I’ve always thought there were two meanings to this phrase in her mind. First, she was at a low point in her life and didn’t see the point of living a lonely life without the man she loved. Second, she came to her senses and saw her low point for what it was. There was no point in ending her life over this man.
I often have days that feel pointless. As an autism parent, there are things I just don’t get to experience the way the parent of a neurotypical child does, and it can be disheartening. Though guilt rises up in me admitting this, I ask myself frequently, “What’s the point?” Then I have days when I remind myself that it’s just a “low point” and there’s no point in wallowing in self-pity. My son is my son and we do what we have to do.
In May, my husband and I had plans to take our son to see Frozen on Ice. My son came down with something and we took him in to see the on-call doctor who prescribed medication for him and then went on to say that we probably shouldn’t take him to the show. “He’s not contagious,” she said. “But it’s a better idea to stay away from crowds so he doesn’t pick up something else. Plus, he doesn’t really understand so he won’t know what he’s missing anyway.” I stopped listening, calmly excused myself, and made it to the car before my husband and I both shared tears over her tactlessness.
She said this garbage in front of my son. She had “known” him for about five minutes. And in that small amount of time, she determined what he could understand and what he couldn’t. She assumed.
I seethed. My son loves Frozen. He loves Bubble Guppies. He asks to go bowling and to go to the beach. He picks certain foods and avoids others. He’s not stupid. He’s not unresponsive. He’s alive and well and he’s a person with likes and dislikes just like you and me.
So we took our son to see fucking Frozen on Ice. And he watched. And he smiled. And in my head, I punched that doctor in the throat. Because on every level, human and professional, she was dead wrong.
Friends and family members jumped to defend me and shared in my anger when I posted about the situation on Facebook. They supported me and commented on all the pictures of William clapping along with his favorite Frozen songs. He wasn’t 100% himself because of his ear infection, but he had a couple of days of antibiotics in him by the time we went and damn it, we were going to Frozen on principle alone at that point.
One of my friends genuinely asked me via private message, “Would William know the difference?” I thought about it. He had never been to the Amalie Arena. He had never seen any show on ice. He had never seen a person ice skating, come to think of it. That had nothing to do with autism, though. So I told her that he understands we are seeing Frozen. I told him it’s in a big arena. I told him we’re going with his aunt and his daddy. He could think we’re just going to watch the movie. But couldn’t any four-year-old think that? Any child might not be able to picture or grasp something brand new to them. And I like to think even if he couldn’t picture the entire setting, he was looking forward to it.
I think people, like this on-call doctor, often believe there is no point in attending big events or attempting to celebrate holidays with children with special needs like William. Because they don’t react the same way. Or they can’t experience it in the same way. But this is funny to me, because how many people do you know who take their infants to Magic Kingdom to meet Mickey Mouse? How many spend hundreds or thousands of dollars on Christmas gifts for a child who will forget the toys and play with the boxes? How many of us throw Pinterest-inspired first and second and third birthday parties that are really more for the invitees than the guests of honor?
Here’s the thing: memories aren’t just for the child. They’re for the parents, too. We do these things to see our children smile, sure. We do them to build our families. And we do them to make ourselves happy, too.
Every year, I’ve selected William’s Halloween costume. I remind him how to say “Halloween,” “trick or treat,” “pumpkin,” and other seasonal phrases. I take pictures and I laugh at him holding a pumpkin full of candy. But it’s hard repeating myself year after year. I shouldn’t be teaching my four-year-old to say “trick or treat” when that was all he could say two years ago, right? It’s hard. But you know what? He is what we have. He is who we have. His abilities are progressing every year, slowly. So we embrace it.
He was an astronaut. Then Jake and the Neverland Pirates. Then Danny Zuko from Grease. Then Albert Einstein. This year, because he loves watching baseball—specifically, the Tampa Bay Rays—I decided to buy him a Chris Archer jersey, fro out his crazy hair, find some baseball pants and cleats, and make him a Rays player. I knew he would like it.
But this year, I faced a couple of obstacles…
One of my friends asked me about William picking his costume. Though I’m pretty open about our struggles, people—out of both ignorance and sheer curiosity—ask questions or make comments that remind me that we’re different. Her question kind of took the wind out of my sails. Would he ever pick his own costume? Should we even try? What’s the point?
Then, William all of a sudden developed a sensory issue with button-up shirts. I started worrying that the jersey thing wouldn’t happen. He wouldn’t wear it. Should I even try to get him to wear it? What’s the point?
On Labor Day, my husband and I took our son for a ride to the Spirit Halloween store. I thought maybe, just maybe, he’ll walk up to a costume that catches his eye.
My son, like always, wanted to run up and down the aisles over and over again. He wanted to push the button that awakened a screaming banshee hanging from the wall over and over and over again. He wanted to see the red lights on the zombies and the smoke coming out of the wolf’s mouth over and over again.
I sat on the floor of an aisle and text my best friend while my husband chased my son. “There’s no point,” I sent her. No point in asking him to pick a Halloween costume. While little boys and girls around me pick their Teenage Mutant Ninja Turtle and Elsa costumes, my little boy repetitively pushes buttons and runs in circles. Oblivious. My emotions spiraled. No point in Thanksgiving. No point in Christmas. No point in Easter. No point in birthdays. He doesn’t even notice. I felt tears coming. Then a text message came in.
“He’ll get there,” she answered. And she’s right.
I stood up, put on my bravest face, and walked toward where my husband and son stood. I was determined to try, and I was determined to not fall apart if my attempt failed.
I took my son’s hand and said, “William, first we need to pick a costume. Then we can push the button.” He said, “Push button.” I said, “First, let’s pick a costume.” And I had an epiphany. Choices. Too many choices.
I walked up and down the aisles in the boys’ section and selected things he would recognize. “Look, Will, it’s Woody from Toy Story!” I said. “Cowboy,” he said. “Look, it’s Superman!” “Superman!” he repeated. “And this is Dracula from Hotel Transylvania. We watched that night.” I did my best Dracula impression, “Dracula—blah, blah, blah.” And he laughed. “And this one over here is Hiccup from How to Train Your Dragon. He’s kind of like a knight because he’s wearing armor. We’ve seen both of those movies.”
I put all four costumes on the floor. “Do you like any of these?” I asked him.
He pointed. POINTED WITH HIS FINGER. Which he never does. He pointed at the vampire costume and said, “Dracula blah blah blah!” And he smiled.
He picked his costume, guys. For the first time.
He probably didn’t pick it like your kid picked his costume. But he picked it.
We did the typical autism parent thing and put the shirt, pants, and cape on, which he yanked a couple of times, and then we distracted him by giving him what we promised: the chance to go push the button to make the hanging woman scream again. (That sounds kind of morbid, doesn’t it?)
He ran through the store, the Dracula cape flying behind him. He pushed the button, flapped his little autistic arms excitedly, and left that freaking costume on for another twenty minutes. It’s a winner.
Sometimes, it seems like there’s no point. It seems like he won’t understand. It seems like we can’t experience the “normal” things.
But really, there’s always a point. Always. Because he’s the point. And he’s a seriously cute Dracula… blah blah blah.