When you’re a child and your face doesn’t look like everyone else’s, when a genetic anomaly leaves you with contorted ears and eyes that seem to be sliding down your face, and dozens of surgeries still can’t really fix it, what you hope for is kindness. Your wish is that people see beyond your face.
The best-selling book “Wonder,” which tells the fictional tale of such a kid, has had a massive cultural impact in recent years as teachers across the country have used it as a textbook of sorts to teach empathy in schools. The movie “Wonder,” starring Julia Roberts and Owen Wilson, is being released Friday to much excitement among middle graders.
The story follows fifth-grader Auggie Pullman, an anti-bullying hero, as he enters a new school, and the turbulence that unfolds as he shows his classmates how his face is misshapen but he’s just a regular kid.
Families of kids with facial differences have embraced the credo of acceptance and kindness in the book. Yet despite those lessons, the story is not entirely relatable for some children who have Auggie’s condition, Treacher Collins syndrome.
“I didn’t like that Auggie was ashamed of his face,” said Teresa Joy Dyson, 10. “I have Treacher Collins syndrome and I’m kind of proud of my face. I’m not afraid to look at people and show who I am.”
Teresa Joy has attended a public school in San Jose, since she was in kindergarten, and has many friends there. She is not bullied, as Auggie is in the book.
She and many other kids with facial deformities, and their families, are nonetheless fans of the book and the movie adaptation. It’s just that the message of the film is not for them, they say. It’s for everybody else.
Teresa Joy’s father, Darryl Dyson, said he’s found that the book has raised awareness of facial differences, specifically that kids with these syndromes are otherwise normal. When he recently took his daughter to his office for Take Your Daughter to Work Day, another girl who had read “Wonder” went right up to Teresa Joy and made fast friends with her.
“To me that was an eye-opening experience,” Darryl Dyson said of his co-worker’s daughter. “I believe she would have reacted completely differently had she not read the book.”
Throughout the week, the film has been shown at advance screenings across the country, some sponsored by hospitals and advocacy groups, and others by families who want their children to watch “Wonder” in a space surrounded by loved ones.
Zachary Muller, 12, also has Treacher Collins, a condition that leaves bones and tissues severely underdeveloped in his face, and that has left him with hearing loss. Zachary, who lives in Southern Maryland, said he liked the book, but he points out that it’s fiction.
“I’m more awesomer than him,” Zachary said of Auggie. “I’m real.”
Zachary’s family, along with another family that has a son with a facial difference, rented out a theater Thursday night in Southern Maryland so the boys could see the movie with people they select. Zachary’s mother wanted him to experience the movie without the pressure of people looking at him and saying, “Oh, that’s the real Auggie.”
Barbara Muller said Zachary could relate as he watched the movie, in particular how Auggie uses humor to deflect negative attention and boost his own self esteem. She said the movie “hit the nail on the head” with its anti-bullying theme, but did not otherwise represent parenting a child with Treacher Collins.
“It covers a very small section of what a family goes through,” she said. “It only covers some of the social, it doesn’t cover the medical, the scheduling your daily life around appointments.”
Zachary has had more than 20 surgeries — some medically necessary, some cosmetic — including two 12-hour surgeries to implant ears on his head, even though they do not improve his hearing, as he uses hearing aids for that. He was born without ears.
The Mullers, both officers with the U.S. Park Police, spend about $70,000 a year in out-of-pocket expenses for Zachary’s medical needs, which they say they are happy to do, even if it is challenging. They didn’t think twice about renting the theater.
Muller said Zachary has not been bullied at school, but he does sometimes feel like he’s on display when he’s out and about with family.
“He used to hide behind us. He used to say, ‘Why are they looking at me? Because I’m different?’ ” Muller said. “We’d say, ‘Zachary everybody is different.’ ”
Now, she said, he’s learned to handle it and sometimes will start a conversation with the people who stare.
“We’ve taught him how to deal with them. We tell him that if people are staring, you look at them straight in the face and say ‘hi’,” she said.
Kyle Aftimos, 9, a friend of Zachary’s who lives near him, was born with a cleft lip and palate. A year and a half ago, he had a surgery to remove a bone from his hip and place it in his palate, a procedure that caused him to miss six weeks of school.
Kyle said the “Wonder” story is educating people who do not share his condition.
“I’m grateful for the movie because, like, some people have heard about it but they don’t bother reading the book. So if they watch the movie, they’ll understand more about it and stop the bullying,” Kyle said.
Erica Mossholder, executive director of the Children’s Craniofacial Association, who has facial differences herself, said the book, published in 2012, has become an opportunity for kids with facial anomalies to talk about their lives if they choose to.
“For many, it has been a window into their lives for their classmates, and opened up a conversation about their deep desire for people to know them as just regular kids beyond their appearance,” Mossholder said.
The association she leads is an umbrella group for kids with facial anomalies including Treacher Collins syndrome. Zachary and Kyle met at the group’s annual retreat.
The actor who plays Auggie in the film, Jacob Tremblay, attended the association retreat two years in a row, playing with the kids, getting to know them and learning from them how to play chess.
Mossholder said that since last year, she’s gotten about an email a week from teachers across the country saying how meaningful the book has been in their classrooms. She said it’s almost turned into a handbook about accepting people as they are.
“Teachers have fallen in love with this book,” she said. “These are moral lessons. You can’t force people to be kind. You can’t really teach kindness, but you can inspire it.”