Even before they’ve met your child, family members, friends, and strangers are likely to have questions about the cleft–just as you did when you first learned about it. While questions may have their origins in fear, worry, confusion or any other of many emotions, parents tell us that it’s most helpful to treat the majority of questions as if they are simply a matter of natural curiosity. That’s a tough one, isn’t it? When the question starts with, “What’s wrong with . . .” or, “Was it something you did . . .?” it can be hard to generously assume the best of folks, but there are some really good reasons to do just that:
1) You, the parent, get to model positive language and attitude for your child. Language and attitude that not only answer the question in that moment, but language and attitude that will help your child answer similar questions with confidence and poise as he or she grows up.
2) Be an ambassador for patients and families affected by clefts and craniofacial birth defect. Did you ask for this job? No. Is it yours anyway? Yes. So here you are, responding to questions, comments, or an unfriendly gaze that may seem rude, judgmental, or even mean. When you help others learn about clefts, you help put them at ease and in so doing, help create an environment that is more supportive and genuinely interested in your child’s well-being and success.
3) Take away the stigma of a birth defect. For some, a birth defect is an unmentionable. Others may believe that talking about the cleft is embarrassing or causes more pain. As your own comfort and skill with talking about cleft grows, your ease with the subject will become contagious for family, friends, and most perhaps importantly, your child.
4) Boundaries are important. What happens when you’ve mustered all the good will, generosity, and patience possible? What happens if a loved one or a stranger persists with language or attitude that is rude, judgmental, or mean? No one–not a grocery clerk, not another parent at the park, not a grandparent–has the right to treat you or your child with disrespect. You and your child should always have the option to say a polite “goodbye” or “see you later” and move on.
Why do you choose to talk or not talk with others about your baby’s cleft?
Strangers and Friends: Part II–Responding to common questions about baby’s cleft.