Recently a sweet little boy asked, “why does her face look funny?” I knew soon enough someone would ask, but I hadn’t thought about what I would say. I fumbled something about missing cheek bones, just like her Daddy, and called my husband over to show his fake ears to the boy. The boys was, as my husband would say, “politely shocked.”
After that I consulted the “Treacher Collins Syndrome” group on Facebook. It’s a group of over 2000 people around the world who either have TCS or one of their family members has TCS. They had lots of great suggestion, which fit into four different categories of responses, which we can mix-and-match, depending on the situation:
Simple, short answers:
– She was born that way.
– That’s how God made her.
– She’s extra special, because God took the time to make her just a little bit different from everyone else.
Focus on the similarities:
– Ask “what’s your name?” and introduce both my daughters to them.
– Say something she likes doing & ask them what they like. Then say “see, she’s just like you!”
– God created us all the same on the inside, with hearts and feelings, but he gave us all different faces. He loves us all the same and treats us the same, so we need to do the same for people who look different than us.
Everyone is different:
– Ask back to them “why does your face look funny?” when they say “it doesn’t,” say “neither does hers.”
– She doesn’t look funny, she just looks different than you.
– Everyone is beautiful in their own way.
– What if everyone in the world had the same hair and eye color? That would be boring and we wouldn’t be able to tell each other apart.
– Do you like butterflies? Each butterfly is different but they all are beautiful. She may look different, but she is beautiful just like you!
– I think she’s so beautiful and I just love her (little chin, ears, dimples, etc)! I They’re one of the things which make her so special – just like your red hair (or long eye lashes, or blue eyes etc. – something unique about the child making the comment) makes you special. (A lady talked to a little boy with red curly hair – as soon as she commented on HIS red hair – he said “Oh, yeah” and smiled!)
Explain the syndrome:
– She has a condition called Treacher Collins Syndrome. It affects the bones in her face (if it’s an adult asking, then we can give a much more detailed explanation).
– Have them feel their cheek bone, and ask if they feel the bump. Then, when they say yes, say that my daughter’s bump is much smaller and so is her jaw.
– (for those who have hearing aids) Her little ears didn’t form properly that’s why she has a hearing aid to help her hear. Without it it would be like walking around with your fingers in your ears! (Glasses help her see. Tracheotomy helps her breathe. Etc)
A huge Thank you to our friends in the TCS group for so many great ideas!
What would you say if someone asked why you (or your child) looks different?
