Cleft lip news: bullying, ‘Wonder’ movie, Cher’s retreat.

This story by Sara Newman came to my attention recently. It provides useful info for families with cleft lip and palate kids. I’ve added the info about Cher and her facial differences camps.

“Anti-bullying messages are prevalent in today’s schools, but some kids still may not understand how mocking someone for their differences can have profound effects that last well beyond the school day.

“It breaks my heart,” Michelle Aftimos of Pomfret, [Md] said of the bullying her son, Kyle, 8, has received at school.

Kyle Aftimos was born with a cleft lip and palate which left a visible gap on the right side of his upper lip. He recently had surgery to eliminate the gap — a bone graft process that took bone from his hip and added it to the gap in his mouth — which made the cleft lip less visible, but left Kyle with a slight limp and out of school for three weeks.

With help from individuals from the Children’s Craniofacial Association (CCA), the Aftimos family has breathed a sigh of relief and helped Kyle realize he is not so different in the world as he often feels at school.

Bust shot of Michelle Aftimos and "Perfect" baby son with cleft lip.

Michelle Aftimos, “Perfect” son Kyle with cleft lip

 . . .

During a yearly clinic visit, Michelle said she realized how serious the bullying was affecting her son when a psychologist said Kyle should attend counseling. Michelle said she began to see how much this issue could grow for Kyle as he got older.

“I spoke with others and they said, ‘Kids will be kids,’” Michelle said in response to the bullying. “He’s kinda shy and he’s a kind kid, and I’ve told him to stand up for himself, but he also doesn’t want to be a bully.”

Michelle set out to find support through the clinic and social networks with no luck until she contacted CCA. The organization sent brochures and information on Kyle’s condition and its yearly retreat. It wasn’t until Michelle and Kyle read the book “Wonder,” by R. J. Palacio, now being made into a movie, that Kyle’s eyes opened to discover he was not the only one with this condition.

The book depicts the tale of a young boy, Auggie, born with a facial deformity and is about to begin fifth grade at a mainstream school. As the new kid, the book follows Auggie’s quest to show his classmates how he is just like them despite appearances.

“It made me feel like I wasn’t the only one and that some people have it even worse than I do,” Kyle said of the book. “It made me feel good and I’m sure it made other kids feel good, too.”

The family was also able to pull together resources to travel to Ft. Lauderdale, Fla., to attend the association’s annual Cher’s Family Retreat[*] Held in June, the event aims to provide individuals affected by a facial difference, their siblings and parents an opportunity to interact with others who have endured similar experiences. Again, Kyle found himself among children and families just like his, including a local family from Bel Alton [,Md].

“The retreat was so heartwarming because these kids would just come up to us and hug us, like they knew we were safe to come up to. We weren’t going to be afraid of their facial difference,” Michelle said.

“My favorite part of the retreat was when I made new friends and found a friend that lives nearby,” Kyle said.

Now that Kyle has had his surgery, Michelle hopes the bullying will subside and the confidence Kyle built up over that summer will not diminish during the school year. She aims to encourage local schools to add the book, “Wonder,” to their curriculum — she says it encourages kids to “choose kind” — and take advantage of a field trip grant for Kyle and his classmates to attend the movie premier of “Wonder,” in theaters April 7, 2017.

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* Having acted in the role of the mother of a child with a craniofacial deformity in the movie, “Mask,” Cher was a natural choice to represent CCA. However, Cher did not become actively involved until 1990 when she joined children, adults and medical professionals in Washington, D.C. to raise public consciousness during Craniofacial Awareness Week. During that time, she developed personal friendships with children and their parents who were there to attend congressional hearings and other activities. …

 

Cher with kids with cleft lip and other facial differences. .

Cher with kids with cleft lip and other facial differences.

On the final night of [the week…] Cher invited everyone to her room where hours were spent visiting and sharing special concerns among craniofacial patients, their siblings and parents. One mother shared that this was the first time she and her three-year-old little boy with Goldenhar syndrome had ever spent time with others going through similar experiences. Others in the room echoed her feelings of isolation. It was then that Cher conceived the idea of camps for the whole family. The goal of camps was to provide opportunities for the entire family to interact, share ideas, discuss problems and their solutions and make lifelong friendships with others having similar experiences.