Helping Your Child To Cope with Crouzon Syndrome

A child starts to notice that he/she looks different from about 4 years old. Here are some practical ways that you can help your child to cope with having Crouzon Syndrome. The main thing is be there for him/her, listen to them and build their self-esteem so they feel good about themselves. Your child needs to know that he/she has your love and your support.

Give your child information on their face:

bullet    Talk to your child about their appearance. Teach them the language for their face and skull.
bullet    Talk to your child about what Crouzon Syndrome is. Explain to them why their face looks different. 
bullet    Teach your child a simple sentence about their face. This will help them to respond to other people. e.g. I have small bones in my face.

Build your child's self-confidence:

bullet    Spend time with your child regularly
bullet    Encourage your child to develop talents and interests
bullet    Reinforce your child's strengths and tell them how wonderful they are and how the family is so lucky that they're apart of it. Build up their self-esteem.
bullet    Encourage your child's friends
bullet    Encourage independence

Communicate with your child:

bullet    Listen to your child
bullet    Comfort your child
bullet    Communicate with your child's school
bullet    Talk about teasing, deal with it when it arises and practise responses for when teased
bullet    Praise your child for coping

Other family members:

bullet    Make sure siblings have basic information which allows them to understand the syndrome. They should be encouraged to ask questions and talk about any difficulties or fears. Help them to develop a sentence of their own that provides others with a simple explanation. From time to time check with your children how things are going for them.


bullet    Talk to your child about their surgeries, and when they are old enough, if the surgery is optional let them decide what they want.

Join a support group:

bullet    If you can, introduce your child to other children who have facial differences. Let them know that they are not the only one with Crouzon Syndrome or a facial syndrome. From personal experience this would have helped me when I was growing up.