Emmy Award-winning composer Ben Decter’s most recent project is It’s All Your Fault, Tyler Price! — a musical about his family. His daughter Addie was diagnosed with severe epilepsy at 17 months old, which affected the entire family, including Decter’s wife, Jackie Sloan, and their son Leo. The show is running now at Hollywood’s Hudson Backstage Theatre.
Leo Decter, Addie’s younger brother, explains that early in the musical, a bully named Tyler Price imitates a seizure to make fun of Lucy (based on Addie), so Lucy’s 11-year-old brother Jackson (based on Leo) punches Tyler in the face. This did not happen in real life, Leo Decter notes, but he had a similar experience.
He recalls, “I had a friend growing up, who is honestly one of the smartest people I've ever known in my life, but he also could make some pretty terrible jokes. And when me, him, and some other kids were hanging out at my house, he started imitating a seizure, and I was really offended, so I kicked him out of our house. … He came back to apologize, this was days later, and I really wasn't interested. I had rejected his apology pretty outright.”
That event caught the family off-guard, Ben Decter says, adding that he personally wasn't bullied or ridiculed when growing up.
“It was just such a jarring splash of cold water — to think that … the closest person in my life, that someone would even think about making fun of, was so upsetting and derailing. And I think this musical grew out of just that idea of … life, as you it pictured it, goes off track, and you just find yourself in an alternate universe.”
He says the story expresses his family’s worst fears and what it takes to get through them. “The show was about our experience with epilepsy, and a place to put my worry — a healthier place — than the road rage that I had sometimes turned to. It was a way to talk about communication and … hard things.”
L to R: CJ Eldred plays Daniel and Charlie Stover plays Jackson in “It’s All Your Fault, Tyler Price!” appears onstage. Credit: Jim Cox Photography.
Jackie Sloan admits that it was hard to speak up when she first noticed Addie having seizures. “You're hoping so much that what you're noticing is just normal and going to go away. And we could not believe, when we went to … the pediatrician, that he took it so seriously and was so worried.”
Addie’s symptoms were subtle at first. Sloan describes, “It was like she was in the ocean, and there were waves of these little shrugs, and her head would go down, but very gentle. … Her hands would kind of open. Her head would shrug down. Her shoulders would go up a little. And it would happen over and over and over. And then afterwards, she would be so dreamy.”
Ben Decter recalls, “I just thought we had fallen off the edge of the earth, and I wanted to be quiet about it.”
However, he says they lucked out — through a friend of a friend, they enrolled Addie into a therapeutic preschool program. He and his wife did couples counseling and a parent support group, which were both mandatory. However, in the early days of the group, only Sloan talked.
“I would gently squeeze her thigh in the hopes that she would stop talking about it, because I thought this was our private struggle. And then the first time, through the group leader’s encouragement, when I talked about it, Jackie was just so moved that I was starting to open up, and said later that I'd given a gift to her and to our whole family. And that really was the beginning of me starting to write songs,” Ben Decter says.
He notes that when he watches rehearsals of the musical, beyond seeing himself in the father character, he wonders if he’s similar to Jackson as well. “And thinking about my own life, and how difficult it can be to communicate about the hard things.”
Erin Choi (top) and Charlie Stover (bottom) perform in “It’s All Your Fault, Tyler Price!” appears onstage. Credit: Jim Cox Photography.
Today, Addie is thriving, and her symptoms have been under control for a while, Sloan says. However, that’s not the musical’s main takeaway. “The journey is pretty up and down for families experiencing this, and the message of the musical was not meant to be ‘and everything will turn out swimmingly.’ It just was trying to navigate the importance of communicating.”
Inspired by Addie, Sloan quit her job as an attorney to launch and direct the The Children’s Ranch Foundation in 2004. She explains that people who experience a lot of anxiety, seizures, or a learning/emotional/social challenge, when they get near prey animals (such as horses, chickens, rabbits, guinea pigs), they’re no longer “the most worried creature in the room.” That’s because those animals have a lot of inherent distress.
“They're really sensitive. They're sensory systems. And being around them, suddenly, you feel how calm you are,” Sloan says.
When Addie took care of prey animals, she was more emotionally connected and available, Sloan explains. “I don't want to make a false link to seizure reduction, but she was so connected. She literally said, ‘I love you, mom’ to me for the first time while we were grooming a horse together.”
L to R: Leo Decter, Jackie Sloan, Addie Decter, and Ben Decter visit The Coliseum. Photo courtesy of Ben Decter.
Ben Decter says It’s All Your Fault, Tyler Price! has brought his family closer. “I feel so grateful that with both Addie and Leo now as young adults, that our communication is so good. I feel like we can talk about anything. I feel really grateful.”
Addie Decter isn’t taking part in the conversation because she’s out of the country.