Putting on a Brave Face: Children with Facial Disfigurements

Facial disfigurements can be caused by birth defects, genetic conditions, or traumatic injuries. Parents of children with facial disfigurements feel a tremendous amount of pain for their child’s sake. That’s because they recognize that going out into the world with a facial difference takes an enormous amount of courage. Children with facial differences are often teased, bullied, humiliated, and shunned.

“I know what it is to be left out of things. On more than one occasion, kids would whisper behind my back, sometimes even throw things at me. I never knew what it was like to have a boyfriend much less go to parties or dances. There were times I was afraid to leave my home. I became isolated because I have Crouzon’s.” Diana, a graduate of Clarion University, PA. (As quoted from AboutFaceUSA.)

In my daughter, Cassidy’s third-grade class, the girl who sits beside her has a repaired cleft-palate. “Nobody likes her,” Cassidy tells me. “They won’t play with her because they say she’s ‘ugly.’” I was shocked at the cruelty she attributed to her classmates. I told Cassidy I hoped she wasn’t one of the children being so mean. “I’m the only one who’s nice to her,” she said.

In many respects I feel unqualified to deal with such a painful topic. My children’s various challenges have not included obvious deformities. Yet I do understand the anguish of a parent who wants to protect her child. And I do feel a tremendous amount of concern for these brave little soldiers who must face a world that can be cruel and unforgiving.

In my research, I found these points to be significant:

  • Children with facial disfigurements need to be reassured that MOST people will respond positively if they are confident. If they are okay with who they are, others will likely follow their lead. The message these kids get from home makes a big difference. If they are taught to hide the deformity from people, even in subtle ways, they will learn to feel ashamed.
  • These children need to be armed with knowledge about their condition, and simple ways to explain it to other kids. “I was born with a cleft palate, and I had surgery to fix it. This is the scar.” Often when other children understand the condition, the teasing will decrease.
  • They should also be armed with words to say when teasing happens. “I don’t like when you say that. Please don’t say it again. I’m going to play hopscotch with those kids over there.” They can learn various responses through role play at home with parents. To engage your child in a discussion about bullying, visit my blog, “Help Your Child Recognize Bullying.” Bullying should be handled immediately through the school with a zero-tolerance policy.
  • Children with facial disfigurements should be taught that other children will have questions, and their curiosity is normal and understandable. It’s better if parents don’t draw enemy lines against other kids where none exist. Questions like, “Is that catching?” “How did that happen?” “Does it hurt?” “Why do you talk funny?” may sound cruel at first, but in reality they come from an attempt at greater understanding. The child should be taught to answer the questions simply, and with confidence.
  • Parents should have private meetings with teachers to discuss their concerns prior to the school year. The child’s disfigurement should be explained, and any classroom accommodations should be suggested. Teachers should be told that the child wants to be treated like the other kids, and not given special treatment, causing further distinction from peers.
  • If the child’s disfigurement is severe, it might help to make an informal presentation to the class where they are allowed to ask the child questions about the condition. (Parents should be present to support the child.) A video could be shown with the child at home, with pets, doing hobbies, playing an instrument, and other daily activities. This helps educate the other children, and allows them to see that their classmate is a regular kid, just like them.

Children with facial disfigurements are eligible for special education services, according to the Individuals with Disabilities Education Improvement Act of 2004 (IDEA). These services might include regular sessions with a speech-language pathologist, meetings with a counselor or school psychologist to improve self-esteem, and any other classroom modifications to help the child.

AboutFaceUSA is a fabulous resource for parents of children with facial disfigurements.

Parents of children without differences or disabilities: Let’s teach our kids to be kind, tolerant, and compassionate to others.

Kristyn Crow is the author of this blog. Visit her website by clicking here.

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