Help your child to cope with their disfigurement

You may be anxious about your child’s future – starting school, for example – and worry about their health and medical treatment options. These concerns are common, but can be overwhelming.

Being better informed about your child’s condition will help you cope with it. Talk to their consultant and don’t be afraid to ask as many questions as you need to.

There are also easy-to-learn, practical skills to help parents overcome some of the common challenges and uncertainties they may face. Your child will learn from watching you deal with challenging situations.

Think about the best way to describe your child’s appearance. That way, you'll be ready when strangers ask unexpected questions. Provide a brief explanation, reassure the person asking the question that your child is fine, and move them on to another subject.

“That way you explain, reassure and then distract the person,” says Helen Smith of the charity Changing Faces, which supports people who have facial disfigurements and their families.

To a question like, “Why is her face like that?” a parent can say, “Sarah’s lip was broken and the doctors have fixed it. We’re off to the park. Where are you going?”

Your child will feel more confident if they see you respond to other people's questions confidently.

“Children learn by watching other people,” says Helen. “If they see their parents positively managing other people’s reactions, they will learn to do it themselves. They will also have a language to use.”

“If someone is staring, it can be helpful to make eye contact and smile,” says Helen. “That is often enough to break someone’s stare.

"You can then choose to continue what you were doing or start a conversation. Parents sometimes see this as a positive way to help people move beyond their focus on their child’s disfigurement, and learn more about their child.”

You don’t have to listen to comments that are offensive – and if you feel like saying something, you can. Short responses are usually best. Try to keep calm, even if you don’t feel it.

Here are some ideas:

• "Please don't stare, my child has a scar on his face."
• "My daughter has a birthmark. You can't catch it."
• "Please don't stare. It makes us very uncomfortable."

Talk to your child and try to move your thoughts away from the person or people commenting or staring.

Children start becoming curious about their appearance from an early age.

Use simple language that is appropriate for their age and experiment with drawings, stories and games to explain things. As they get older, tell them in more detail about their condition.

“Be open and honest with your child,” says Helen.

“Having something to say and knowing a bit about their condition will help them cope with their disfigurement and with other people’s reactions to it.”

Listen to what they say and help them understand their condition. Encourage them to ask questions.

Some children would prefer never to discuss their disfigurement, because they find talking about it difficult or distressing.

But spending time discussing some of the situations that arise will help your child to prepare for any questions, comments or bullying they may encounter at school. Choose a quiet time, when your child is in a calm and receptive mood.

“Preparation starts at home,” says Helen. “Start with simple activities such as drawing, playing, reading stories, and pointing out differences and similarities between people.

“Talk openly to them about diversity and use words that are non-judgemental. Always make it clear that their disfigurement is one small element of who they are.”

Help your child to make friends

Helping children develop their social skills will mean they find it easier to meet new people. Good social skills can include being the first to say hello, smiling, listening to people and being interested in others.

By seeing how you respond to people’s curiosity, your child will learn that questions can be dealt with calmly and that their disfigurement is not a forbidden subject when meeting new people.

With your help, they can work out the responses they feel most comfortable with, depending on the situation.

Talk to your child's school

If your child is starting a new school, make sure their new teacher is aware of the possible difficulties they may have as a result of their disfigurement.

For example, you can discuss with them how best to manage the reactions from other children, and you can explain how your child likes their condition to be referred to. Some teachers may want to speak to the rest of the class before your child comes in, to reduce the chance of stares or questions, but the charity Changing Faces doesn't recommend this approach. Their advice states:

"Making friends begins with looking and being looked at. The other children are likely to look carefully, perhaps with surprise and interest. They usually ask questions – of the child herself, of another child, or of a nearby member of staff.

"If these expressions of interest are discouraged, the child who looks different is at risk of finding it harder in the long run to make friends."

This chimes with Clare Cox's childhood experiences. Clare's condition, Goldenhar syndrome, made one side of her face smaller than the other, and her left ear was undeveloped.

"When I was eight years old, I started a new school. I'd discussed with my parents what questions I might get about my face, and had practised suitable answers. To my surprise, no one said or did anything, even when I volunteered information. Instead, everyone avoided me and I really struggled with making friends," she says.

Clare later learned that the other children had been warned by a teacher not to stare or ask questions. "I was dismayed. I understood that the school was trying to help, but this had really set me apart as different from the word go," she reflects. "The children felt discouraged from making any contact with me, for fear of saying the wrong thing."

Further information

Changing Faces has more advice for parents of children with facial disfigurements.