‘Don’t judge a book by its cover’
About Face provides support for children, families with facial differences
The head of the division of plastic surgery at IWK Health Centre in Halifax uses a familiar phrase when talking about people who live with a facial difference.
“Don’t judge a book by its cover,” Dr. Michael Bezuhly said on Feb. 27 – which, ironically, was Pink Shirt Day.
“Your face has significant implications for what people think of you, how they judge, or more importantly, misjudge you. So the adage, ‘Don’t judge a book by its cover,’ totally holds true for people with facial differences,” Bezuhly added.
Grade 12 students Travis Price and David Sheppard started Pink Shirt Day in 2007 to support a younger student in their school, Central Kings Rural High School in Cambridge, N.S., who was being bullied for wearing a pink shirt.
Pink Shirt Day – and its antibullying message – is now recognized globally.
Bezuhly said children with facial differences are potential victims of bullying and teasing.
“Knowing how to cope with those things as you get further along in life, in particular, when you don’t have your parents to protect you all the time – learning those strategies is great and that’s what About Face does,” he said.
Founded over three decades ago, About Face is a national organization that supports people of all ages who live with a facial difference.
Bezuhly is a member of the organization’s board of directors.
An estimated two million Canadians live with a facial difference.
A facial difference refers to people whose appearance, from the neck and above, has been affected by a congenital, or an episodic (such as rosacea or acne) condition.
Bezuhly said it’s important for children with facial differences to interact with other children who may also look different than their peers.
About Face programs and services help not only the child but other members of the family, he said.
“The challenges these children face – the same worries, the same concerns – are very common in all kids with facial differences... just knowing you’re not alone is a very powerful thing,” Bezuhly said.
MOM WITH A MISSION
Lisa Sooley started an About Face group in Newfoundland over 10 years ago when she was told her baby would be born with a cleft lip and palate.
A cleft lip and palate, she explains, is characterized by both a vertical split in the upper lip and an opening in the roof of the mouth.
While health professionals have always been supportive of her son, Kyle, who is now 11, Sooley says she would have liked to get together with other moms going through similar experiences.
“I found out that About Face had all those wonderful programs and playgroups and camps but there was nothing in this province,” she said during a recent phone interview.
Sooley began reaching out to other parents and started hosting playgroups about once a month. Over the past couple of years, her group has also held a camp, welcoming families from all areas of the province.
Staff at the Janeway give Sooley’s contact information to mothers who may benefit from the group.
“Knowing that other moms, from the time they find out from the ultrasound that they are having a baby with a facial difference, have that support now is a good feeling. About Face has my heart. I feel such passion and love for these families,” Sooley said.
SUPPORTIVE PLACE
The Leonard family is one of the families that are grateful to be part of Sooley’s group. Terrence and Amanda Leonard’s 10-year-old son, Jackson, was born with a cleft lip and palate.
Jackson was in the Janeway Children’s Hospital in St. John’s, N.L., the week of Feb. 25, undergoing his fifth reconstructive surgery.
“Jackson came into the world a very happy boy and still today continues to be a very happy carefree boy who doesn’t sweat the small stuff,” said his mother, Amanda Leonard.
Leonard met Sooley shortly after Jackson was born.
“We began attending playgroups right away. Lisa’s son (Kyle) was under a year old ... and they were one of the only families we knew, at the time, going through the same thing as us,” she said when answering questions via social media.
Leonard continues to attend the playgroups with Jackson and his five-year-old brother Daniel.
“Our group has been a place to go and share our stories as parents, ask questions, and talk about our struggles and accomplishments that most other parents don’t understand,” Leonard said.
“It’s also a great support for siblings of our kids, as they also enjoy meeting kids from other families that are going through what they are with their brothers or sisters,” she added.
AIMING TO BE INCLUSIVE
About Face executive director Danielle Griffin, who is based in Ontario, said the organization has about 75 volunteers across the country who offer various initiatives in their communities.
About Face also strives to increase public understanding and acceptance of people with facial differences, Griffin said, and is looking at expanding its program into the school system.
Griffin uses words like inclusion, diversity and kindness – words that should resonate with all Canadians.
“Lisa (Sooley) has done a really great job in St. John’s getting the families together. It’s amazing that she has given (families) that opportunity to get together and share their stories,” Griffin said in a phone interview.
People with facial differences have the same hopes, dreams, and feelings as everyone else, added Bezuhly.
Everybody deserves a voice, Bezuhly said, and to be seen, despite their differences.
“It’s the differences that actually make a society vibrant and the world a better place,” he said.