At the CLAPA AGM in 2003 in London, it was suggested that it may be helpful if adults with cleft lip and palate
could provide ideas, based on their own experiences, which might help parents in dealing with their children’s condition.
These suggestions were collected together from the hearts and minds of adults with cleft lip and palate
and parents of children with cleft lip and palate, all members of CLAPA adults.
Copyright 2003 CLAPA AGM. All rights reserved.
Your Child with Cleft Lip and Palate
1. Your child is just a normal kid. Treat him or her like the rest of the family but ensure the whole family understand the nature of the condition.
2. Always be open about the cleft with your child and the rest of the family. The cleft should be a normal topic of conversation, discussed with your child from an early age.
3. Ask non-family members or others not familiar with your child for an honest opinion of your child’s speech. Parents, through familiarity, can't always spot problems or changes.
4. If your child expresses anger/sadness/resentment about their cleft, help them face these emotions in a positive manner. Find out and tell them what their treatment will achieve.
5. Kids are tough. Try not to be over-protective. There is a balance, however and you should monitor how they deal with teasing, etc
6. Fistulae and food sometime don’t mix. Try, by discussion to find out which foods are problematic and avoid.
7. Self-belief is very important. Try to encourage your child to have a positive self-image and outlook.
8. Everyone looks better when they smile. This is doubly true of people with clefts.
1. Never be afraid to voice concerns to your medical team about anything you are unsure of. Don't allow doctors to pressure you into treatment you're not sure of. Make them explain the benefits and drawbacks of any procedures.
2. Be open about treatment/operations with your child. Tell them in advance they are going into hospital and exactly what they are having done. Answer any questions they may have, and if you don't know, find someone who does!
3. Dentists - Your child will see more than his fair share of dentists. Do everything you can to make sure they are comfortable with visits to the dentist.
4. Don't assume that once the last operation is done that is the end of the whole thing. Your child may need to carry on speaking about it and it should be welcomed - not 'put away' as something that is finished with.
5. Making a fuss of your child helps when they’re going into hospital. However, siblings can get jealous, watch out!
1. Work closely with pre-school/Infant/Junior/Senior Schools. Give them as much information as possible regarding clefts and what your child is likely to go through.
2. Identify and encourage your child to develop his/hers strengths and interests, be they academic, sporting, musical, etc. Earning certificates, badges, awards, etc for achievement helps to build confidence. The aim is for your child to be known for something other than for having a cleft lip.
3. Encourage your child to talk about school and his treatment by teachers and fellow students. Listen to your child's concerns, try to put yourself in his/her shoes, try to understand how they feel.
4. Explain your child's condition to his/her peers. Kids can be nasty, especially about things they don't know about or understand.
5. All kids get teased at school. Be aware that bullying is a possibility but not necessarily because of the cleft. Don't blame everything on the fact that your child has a cleft.
We hope you have found this information helpful.