The information and opinions on this blog come from parents, and the blog is not associated with Primary Children´s Medical Center or any other institution.


This site is specifically for parents of kids with clefts being treated at Primary Children's Medical Center in Salt Lake City, Utah, but I hope that there will be information that is helpful to all parents of kids with clefts. If you are just starting to learn about clefts, I would suggest starting with the "General Information" topic and going from there. To find information on a specific doctor or topic, click on one of the links on the right. You can also search the blog using the box below the topic list. If you have information or experiences to share, please leave comments or contact me to do a guest post at Thanks for visiting!

Friday, October 30, 2009

Dealing with Insensitivity

I have a lot to learn from my husband. I am generally pretty easy-going as far as dealing with people, but if you do something potentially offensive to a loved one, I turn into a fighter (I'm soon to be a lawyer; what can I say?). While John brushes things off, I get offended on his behalf. But he doesn't get ruffled, and sets a great example.

The last two years there has been a 5K and 1 mile walk in Provo Canyon that benefits Project Smile, a group that travels to developing countries to provide surgeries for children with clefts. We did the 1 mile walk this year (Ethan was a month old, and I wasn't about to be doing any running...). A short time ago John was wearing his shirt from the race in one of his classes, and a classmate noticed it. He asked if John knew what Project Smile was, and John confirmed that he did. Then, with a smirk and a half-laugh, he asked John "Have you ever seen one of those kids?" and started to make some kind of face. Before he got the chance to go any farther, John calmly said, "Before you say anything that you may regret later, my son was born with a bilateral cleft lip and palate." The student became understandably sheepish, then attempted a recovery by saying that his company printed the signs for the 5K.

My brother-in-law, who is in the same class and heard the exchange, jokingly commented to John about what he would have liked to do to that particular student's smile. I was with him on that one... But I am definitely proud of John's reaction and that he redirected the conversation and then let it go. And it got me thinking again about something I've contemplated in the past: how do we help people to be sensitive to facial differences? Surely that student will think twice in the future before mocking a birth defect. Here are a few additional thoughts and observations that I have had:
  • Most people want to be sensitive and supportive when they talk to us about our kids, but don't know how. I try not to take offense when I see an effort being made, even if the way the words come out aren't exactly how I would like them. For example, before my son's lip and nose repair, I had a few people ask "Was he born like that?" My initial urge was to reply sarcastically, "No, I did that to him. What do you think?" But I refrained, because I know that if they are asking, it is usually because they don't know how to ask about a birth defect in a sensitive way. The word "defect" is a pretty harsh word when used in reference to a baby, so I notice that people avoid it, which is nice, but sometimes they have a hard time articulating the same idea with a different word.
  • Children tend to stare, and also tend to say everything that comes into their heads. I have heard lots of kids commenting that "He has an owie!" or "Mommy, did he go to the hospital?" or "How come his mouth is like that?" I figure that by explaining rather than being defensive, I am helping one more child to grow up to be a more sensitive person. And when I demonstrate that I don't mind their childrens' curiosity, parents feel more free to ask questions, too.
  • When I deal with people who are insensitive, I try to think about what I would like to teach my son about dealing with the same insensitivity as he grows. My hope is that my reactions can show him that we can be kind to others and share rather than getting angry or allowing our own self-esteem to depreciate.
Do you have any similar experiences or suggestions?


  1. Hey Meg,
    I had a similar situation when my son, Parker was a baby. My little sister wanted to take him for show and one believed that a 5 year old was an Aunt. She was so proud of him and didn't even seem to notice that his lip looked different. When I pulled the blanket back from his carrier, her teacher gasped and said "what's wrong with him? Is that a cleft lip." To which I replied "Yes". She then asked if we were going to have it fixed. I assured her we were, but inside I was thinking "of course, you idiot." I then went out to my car and cried. I still think about that exchange often and it's four years later and another cleft affected child and a lot more experience. I would have liked to have handled it differently. Now I would have explained it and enlightened her on clefts. I think you are right when you say that people just don't know how to respond. I don't know that I would have, prior to having two children with this birth 'defect'. I'm not as sensitive to people's comments, as I once was and I feel like helping people understand better what exactly is going on with my childs mouth, helps them and me. I've found that most people are sensitive and try to say the right thing- even when you can tell they don't know what the 'right thing' is.

  2. I cried when I read this post. Thank you for sharing.

  3. My second child, who is almost 4 months old has a cleft lip and gum. I have had mostly good experiences and I love how kind everyone is at church. I think what helped the most was that I never treated Joe differently even in the womb. I blogged about all his ultra sounds and what the doctor said and once he was born I took just as many pictures as I did with my first son. I think that really helped my friends and family to feel comfortable in talking to me about it and the first time they met Joe they felt like they already knew him.
    I have had some bad experiences and it truly saddens me. In fact, yesterday there was a little girl that kept laughing at Joe and then she would run to hr brother and continue laughing. I mostly got so upset because I felt that the parents should have put a stop to their kids behavior.