Tallk to Your Child About His or Her Condition
Families make individual decisions about how and when to talk with their children about their particular condition or syndrome. Generally, it’s been found that the adults who are the most comfortable with themselves and have higher self-esteem are those who have communicated openly about their condition with their families and other people in their lives since they were very young.
In a family environment that encourages open communication, a person born with cleft lip and/or palate, for example, will have baby photos in the family photo album that chronicle his or her birth with the condition as well as his or her growth and progress in the ensuing years.
Providing correct names for your child’s condition from the start will also help empower him or her when interacting other kids, as well as adults. For example, when asked about his lip, a child might say “This is the scar from my cleft lip.” When you are teaching your child to name all the parts of the body, it is also important to include and name all parts, such as my nose, mouth, and, in the case of a microtia, “my little ear” and “my big ear.”
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Goldenhar Syndrome Support Network
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