Six tips for talking with your child about cleft lip or palate

back to school tips for cleft

Having a facial difference such as cleft lip or palate can be difficult for any child, but it’s especially challenging when they’re about to enter a new social situation like going to school. For some parents, this time is even more stressful than it is for children. In fact, many of the parents whom I meet in the Cleft and Craniofacial Center at Boston Children’s Hospital tell me that having discussions with their child about the cleft is the number-one concern. 

Ideally, you’ll start talking with your child about school or other social situations well in advance. Remember, family is our first real social experience, so I encourage these preparatory conversations in the home environment. If you’re worried about how your child will adjust to school’s social dynamics, I recommend the following six steps.

No1
Take the time.

Be intentional about talking with your child about their cleft. Parents tend to be very simplistic in their description of this difference, referring to it as a “boo boo.” While not a negative word, I encourage you to take it a step further by using just as simple but more precise language: Call it a cleft. Set aside about five to 10 minutes a week to help your child understand the basics of the condition — in a developmentally appropriate manner — so they’ll feel more empowered to talk about it with peer groups and authority figures.

No2
Role play.

Teach your child about the importance of nonverbal communication and practice body language and eye contact, which supports positive self-confidence.

No3
Tell the school.

It’s crucial that you reach out to administrators and teachers at the school and explain their facial difference before the new school year begins. Be sure to share the exact language and messaging that you’ve been using with your child so everyone is on the same page: I’ve had parents tell me that well-meaning teachers have called their child’s cleft a “boo boo” — even though the child knows it as a cleft. Messaging continuity at home and in the school supports normalization.

No4
Redefine tattling.

In my experience, kids don’t want to “tell” on someone out of fear of being a “tattletale.” Together with you child, create a plan for when someone picks on them — make sure they know how to access help and ask for it without feeling like a tattletale.

I try to reframe tattling so children view it as being kind: “If someone is bullying you, you’re not doing something wrong by telling the teacher. You’re helping that person learn to be kinder.” This often shifts kids’ perspective because it broadens the scenario to an opportunity in which the child can redirect the focus on the cleft to a more universal issue, like being kind to others.

No5
Make play dates.

Encourage your child to expand their social circle by making lots of different friends. There’s strength in numbers and having a variety of friends can improve camaraderie and minimize isolation. Especially encourage classroom friendships, allowing your child to feel that sense of community daily.

No6
Let your child be your guide.

You may feel tempted to constantly check in with your child to see how they’re dealing with their facial difference. But don’t assume that they want to talk about it — or even that they’re bothered by it. Observe your child, but try not to read into their actions. What are their expressions when looking in the mirror? Are they touching the cleft often or asking questions specifically related to the cleft?

Your child could be struggling to adjust to their appearance or be embarrassed, but they could also just be curious. Approach the matter from a pure, objective place and let your child lead you.

Learn more about the Cleft and Craniofacial Center.

About the blogger: Amanda Lassiter is a social worker with the Boston Children’s Cleft and Craniofacial Center, where she runs a support group for parents of children with a cleft lip or palate.