Jacob Tremblay, left, and Julia Roberts in a scene from "Wonder." Photo / AP
Jacob Tremblay, left, and Julia Roberts in a scene from "Wonder." Photo / AP
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 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 United States have used it as a textbook of sorts to teach empathy in schools. The movie Wonder, starring Julia Roberts and Owen Wilson, has just been released.
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, so much so that some along with advocates and hospitals rented out theatres around the country for advance viewings of the film.
Yet despite Wonder's important lessons, the story is not entirely relatable for some children who have Auggie's condition, Treacher Collins syndrome.
Teresa Joy Dyson, 10, says "I'm kind of proud of my face." Photo / Family photo
"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.
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 Wonder, but it's fiction. "I'm more awesomer than him," he said of Auggie. "I'm real."
Zachary Muller, 12, says he's "more awesomer" than the main character in "Wonder." Photo / Richard Muller
Zachary's family, and another family that has a son with a facial difference, rented out a local theatre so the boys could see the movie in a space 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."
"We owe it to him to see the movie before it's open to the public," Barbara Muller said before the movie, "so he's prepared if we go out to dinner and somebody says something to him."
Muller said Zachary could relate as he watched the movie, in particular how Auggie uses humour 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," said Muller. "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 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 US Park Police, spend about US$70,000 ($102,000) 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.
Despite those difficulties, Muller said that she has learned that, "If you handle it as 'Woe is me, oh poor me' you are doing disservice to yourself and your child."
Jacob Tremblay, right, and Julia Roberts. Photo / AP
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 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 and whose family rented out the other half of the theatre, 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.
Joy's father, Darryl Dyson, said he's found 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.
"I believe she would have reacted completely differently had she not read the book," Dyson 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 and getting to know them.
Mossholder said since last year, she's got 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.
• Wonder is out in New Zealand cinemas on Thursday.
