July is National Cleft and Craniofacial Awareness and Prevention Month. Children with clefts or craniofacial conditions often have to engage with others about their medical condition. That might look like harmless social questions, peer teasing, or even ongoing bullying.

The following guide can help kids and their grown-ups be prepared to handle these situations.

Social Questions

It is very common for children with visible facial differences and medical, speech, or developmental conditions to receive comments from peers about their difference. Social questions and comments like “You have yellow hair” or “Why are you so short?” are very common, especially from younger children. Sometimes these questions are even a little inappropriate or embarrassing for adults to hear. There are a few techniques that adults can use to help children be prepared for these conversations.

• A great way to get started is to practice talking openly and accurately at home about the child’s diagnosis, repair scar, speech issue, and/or medical plan.
• Sometimes adults try to minimize conversation about cleft because we don’t want kids to focus on something that seems like it might be negative. We might use words like “boo boo” or shut down questions because we worry that it might make our kids uncomfortable.
• But it can be very helpful to model an age-appropriate, but accurate explanation of the cleft. For example, “When you were born, you had a cleft lip because your skin didn’t close all the way. The doctors did surgery to fix it, and the little line is the scar that is left from the stitches.”
• You can follow your child’s lead and give them a more advanced explanation when they are ready. This will help your child have a good understanding and also have some words ready to answer other people’s questions.
• You can also help children by preparing them for the fact that other children are likely to ask questions. You might say, “You are going to meet new friends at preschool. They might ask questions about your cleft scar. What do you think you will you say if someone asks what it is?”
• If you are there when a child asks a question, you can model for your child how to answer.

A Helpful Technique: CLP

I like to use CLP (easy to remember because CLP also stands for Cleft Lip and Palate) as a way to remember that a good script involves answering with Confidence, practicing Language or the words we are going to use, and Pivoting on, changing the subject on to something else.

For example, a CLP script might involve using a cheerful and confident voice to say “That’s a scar from a surgery I had as a baby to fix my cleft lip. The doctors fixed it, and it doesn’t hurt. Do you want to go play soccer?”

Teasing

Teasing is when peers intentionally call attention to differences in an effort to hurt feelings or separate a child. Teasing can be harmful and, unfortunately, it is also common.

Most children have experience with being teased, and many children may engage in at least one episode of teasing behavior towards others.

• Teasing should be managed at two levels, giving kids skills to manage in the moment and making adults aware of the teasing so that the situation can be monitored and addressed.
• For the skills part, we are going to rely on some of the techniques we already discussed, including that “anticipatory guidance,” or “preparing for the worst.”
• Preparing children for teasing can feel uncomfortable; parents might feel like they are “borrowing trouble” or just want to hope for the best. However, a child that is prepared for teasing has a chance to manage the interaction effectively and limit the impact on their functioning.
• Adults can help their child role play and practice how to handle teasing by using the techniques above or by practicing assertive communication, described below.
• Finally, although children sometimes worry about being labeled a “tattletale,” teasing should be reported to a trusted adult and then communicated to the relevant supervising adults for monitoring.

Adults can help by working with your child to identify someone they trust in their different environments, and then even having a conversation with that person to let them know they are your child’s contact.

A Helpful Technique: Assertive Communication

Let’s talk about assertive communication. This is one step beyond our CLP response because we need to help our child address a more aggressive peer, manage more difficult feelings, and also talk about their own needs.

• Assertive communication has two different parts: What you see (our body language) and what you say (our word language).
• Adults can help kids understand the importance of body language by role playing and modeling this behavior. Standing up straight, making eye contact, taking a deep breath, and using a confident tone of voice are all parts of assertive communication that might take practice.
• The words that a child might use might start with an “I statement,” such as “I don’t like it when you call me a name.” Or “I don’t want to play that game with you.”
• You can also help your child practice a little trick for remembering how to use assertive communication while giving feedback to someone else. It goes like this: “When you blank, I feel blank. It would be better for me if you blank.” This might all come together in some practice to sound like: “When you call me names, I feel sad. It would be better for me if you just asked me about my scar” or any other number of things that would apply to a situation.

Bullying

Bullying and teasing are often confused but are actually quite different. Bullying is an unwanted and aggressive behavior that is repeated (or is threatened to be or has the potential be repeated).

Bullying also takes place when there is a perceived power imbalance, such as a perceived difference in size, strength, social status, age, or cognitive ability of the children involved. If the kid or kids involved think there is a power imbalance, then there is one, regardless of what adults might think.

Bullying is different from teasing in this way. It is also different than peer conflict between equally matched peers, even when it becomes aggressive. Peer conflict is a normal developmental challenge. Bullying is an act of aggression toward a victim.

A Helpful Plan: Focus on Safety

Because bullying is a serious act of aggression, experts encourage families to focus on child safety.

• First, you can coach your child to try ignoring the bullying. Sometimes, kids who bully are just looking for a response, and refusing to give it might cause them to move on.
• Another option is to use “safety in numbers” and stay together with groups of friends or adults.
• Finally, encourage children to exit the interaction as fast as possible and tell a trusted adult. Adults can help kids by having those “anticipatory guidance” conversations and helping children identify their trusted adult.
• One of the best predictors of eventual child coping in these situations is the response of the first adult who finds out.

Listen without judgment (the natural response of parents to try to figure out what your child did to contribute to the problem). Immediately after a bullying event, it can be natural to ‘get caught up’ in trying to determine what happened. However, the immediate focus should be addressing safety and providing reassurance to your child that talking was the right choice and that you will help them solve the problem.

It’s also important to communicate to your child that bullying has very little to do with the victim, and a great deal to do with the bully. “It’s not you, it’s them!”

• You should take steps to meet any immediate physical or mental health needs. Taking care of your child is always the first step.
• It’s also much easier said that done, but staying calm in the situation and modeling respectful behavior toward all parties will help your child regain a sense of stability and control. If adults are out of control, children feel out of control.
• Next steps include notifying responsible adults (e.g. school personnel) if they don’t already know. Caregivers should plan a follow up with those responsible adults to ensure that the situation is being addressed adequately.
• As things move forward, adults can also talk with the child about their opinions on developing a plan for safety to make sure that their perspectives are being understood. Adults should strongly advocate that changes be minimized for the child who was bullied. They should not have to move desks, classes, or busses, if at all possible. That’s a negative outcome for children and a kind of victim shaming.
• Adults are strongly encouraged to reach out for their own supports during these situations. Coping with bullying for your child is incredibly emotionally challenging, and adults should feel encouraged to reach out to friends, family, other cleft families, and mental health providers on your cleft team or in the community for support.
• There are many resources online about advocating for your child at school in a bullying situation, including StopBullying.gov.

Finally, let’s talk about signs and symptoms that might warrant more help for your child.

• All kids, including kids with cleft, can sometimes benefit from more support.
• Situations related to bullying, teasing, and social conflict can also potentially lead to more serious mental health symptoms.
• Any changes in usual behavior or mood can signal a more serious concern. Physical symptoms, trying to avoid school, lack of participation in usual activities, or suddenly lower school performance can also be concerning signs.
• Finally, caregiver intuition is very valuable. If you think your kiddo is struggling, they might be struggling and need some extra help.

If you want or need some extra help for your child, you can access resources via your WVU Medicine Children’s Cleft Lip and Palate Team and psychologist, your child’s pediatrician, local mental health providers, family support groups, and various internet resources starting here.