Mayo Clinic facial reconstruction surgeon Dr. Samir Mardini and physician-scientist Dr. Marissa Suchyta usually work with children and adults with facial differences in a medical environment. Now, they’re working with them in a different way: through the publication of a picture book focused on their experiences.
Along with illustrator Violet Tobacco, the two doctors wrote and published “My Extraordinary Face” through Mayo Clinic Press about how four children cope with bullying, self-confidence and their own facial differences. The book also contains notes for caregivers about raising children with craniofacial differences and how to help children build empathy towards them. The authors say their hope is to have the book taught in schools.
As we spread awareness and understanding of physical, intellectual and developmental differences this month, here are some tips on how to talk about these differences with children.
Q. What are the most common craniofacial differences you work with?
A. Mardini: In children, it’s mostly cleft lip and palate, hemifacial microsomia, congenital nevi and facial paralysis.
Q. What made you want to write a book about craniofacial differences?
A. Suchyta: I think we saw that in a lot of these families, facial differences are accepted within the family unit, but there isn’t a whole lot of conversation within the family about how to address questions, prevent bullying and build confidence. And we saw that a lot of these issues were…reported in scientific literature, but that wasn’t accessible for parents, caregivers and, most importantly, children. This sparked our interest in creating an accessible way to get these amazing resources and tools to children and their families.
A. Mardini: Because our practice is focused on facial reconstruction, we were very interested in having the story revolve around children with facial differences, but the book is about coping mechanisms for any child with a difference, or any child dealing with being even different as a person…physical, behavioral or even cultural [differences].
Q. How can a parent help their child build a healthy relationship with their appearance at a young age?
A. Suchyta: …We recommend that a child give their classmates a presentation about [themself] and their facial difference at the beginning of the school year and focus on the aspects of themself that may be similar to other children. Taking ownership of the narrative…makes it so that other children can’t tease them as much, and the power of that teasing is then taken away from them. And practicing, as a family, ways to address different questions means that a child won’t be addressing their facial difference in a new situation where they don’t have support for the first time.
A. Mardini: Children are very curious, and you’re not going to stop their curiosity. So, the people around these children with facial differences/any other difference need to talk about what they see that looks different. It helps to break the ice to talk about it. Parents should help their child understand that everybody’s unique in their own way, and that their story is something they should be proud of. In the book, one of the characters says, “Yeah, my ears may be big, but that helps me hear you better,” or “My ears are big, but I can play soccer really well. That doesn’t stop me from playing soccer really well.” You fulfill the curiosity of the children around them, and there’s nothing more to talk about.
Q. If a child has never met someone with a craniofacial difference before, how can their parents help them build empathy towards people with those differences?
A. Suchyta: Ensuring that their child is exposed at a young age to a diversity of other people is important. And demonstrating by example is paramount. So, I think when parents see someone who may have a disability or may have a difference, talking about it with their children is important. Maybe on the car ride home saying, “I saw you looking at that man who was in a wheelchair at the grocery store. Do you have questions? Do you want to talk about this as a family?” I think that it is important to open up the conversation because all children genuinely have questions, and answering those questions instead of avoiding them helps them understand.
