Jenny's Story: My Life with Crouzon Syndrome
Growing Up with Crouzon Syndrome
Being an Adult with Crouzon Syndrome
Being a Mother with Crouzon Syndrome
Dealing with Unexpected Crouzon Syndrome
Helping Your Child to Cope with Teasing
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Jenny's Inspirational Sayings II
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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:
 | Talk to your child about their appearance. Teach them the language for their face and skull. |
| Talk to your child about what Crouzon Syndrome is. Explain to them why their face looks different. |
| 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:
| Spend time with your child regularly |
| Encourage your child to develop talents and interests |
| 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. |
| Encourage your child's friends |
| Encourage independence |
Communicate with your child:
| Listen to your child |
| Comfort your child |
| Communicate with your child's school |
| Talk about teasing, deal with it when it arises and practise responses for when teased |
| Praise your child for coping |
Other family members:
| 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. |
Surgeries:
| 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:
| 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. |