You'll find hundreds of files on cleft lip, cleft palate here on widesmiles.org.
This one is about: Your Child's Need to Know
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Your Child's Need to Know
(Talking to your child about Clefts)
Excerpted from a Cleft-Talk post by Sharon Gerfen
First I believe that children pick up a lot on their own, whether they hear you talk to the doctors, family members, and or friends.
Second, I think that they have problems when all the "pieces" don't fit.
Third, I think it is then time for the parent to step in and fill in those pieces or help the child fill in those pieces and the only way sometimes is to bring it up. Occasionally you will have that child who will bring it up themselves which of course makes it easier to start the conversation. Remember this in a few more years when the "birds and the bee's conversation needs to come up.
Most children do not need long and lengthy, medical terms and explanations to fill in these pieces. And if/when you talk to your child you need to take that into consideration.
My daughter, born with Pierre Robin, was easy for me as she was always inquisitive. She started out with why she had her second belly button (g-tube scar) and we told her that she had a problem when she was first born eating so the doctors made an easier way for her to get her food. A few more similar questions -- like did it hurt etc and that conversation was done. We have had several conversations during the years and most were finished within a half an hour.
Occasionally she seemed to be bothered about something and with some probing we usually could get an idea of what was going on and then we would approach the problem. As she has gotten older, she has become more apprehensive about operations. She has asked more and more detailed questions about what is going to happen and why it is being done. We keep the words at her level and very simple - expanding ideals when and where they were needed.
Basically a child needs to know that the emotions that they are feeling are okay and appropriate ... and if it is anger because of their cleft then it is their right and they need to be able to vent it. Remember, no matter how much we loved them and came to love their "widesmiles" there was an anger that our children had to go thru what they do. It's okay for a child to hear oh but you were so sweet looking or nobody else really notices and the child to answer back, I NOTICE, it MATTERS TO ME. Those are his/her true feelings -- those feelings need to be validated.
The most important thing is to make sure that your child knows that they can come to you and talk to you ... and that you make opportunities for them to do so.
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