Saturday, August 13, 2011

Time for School

At our house right now we are busy getting appointments and shopping done in preparation for the start of another school year. Peter also just got braces and new glasses, so I think we are just about ready for the first day. In Michigan that is not until after Labor Day.

Peter is going into fifth grade this year, so all the kids in his class are familiar and used to his differences. He goes to a private Catholic school that has zero tolerance for any aggressive behavior (teasing or bullying). This gives him a well-protected and very caring environment for learning. Peter will be with these same students through eighth grade, so I’m not nearly as anxious about the approaching middle school years as I would be if he had to change schools. Also, I have really grown to love the kids in his class and how compassionate and protective they all are toward him.

I have been invited to speak about Peter’s differences twice since he started at his school in first grade, and each time I have really enjoyed the experience. In fact, I think I got just as much of an education out of it as the kids did. Each time, they delighted me with their care and concern, their interesting questions, and their knowledge. Peter also served as my assistant and loved soaking up all the extra attention.

Each time I came to the classrooms, I brought in items they could pass around and hold, including a trach, a feeding tube, and a prosthetic ear. We talked about how each one works and even squirted water through the feeding tube and watched it flow into a bowl. I also brought in photos that showed how Peter’s ear was made and pictures from CCA retreats showing other kids with facial differences. We talked about the unique faces in the photos, how they look different and sometimes get teased, why they have a lot of surgeries, and how they enjoy and want to do the same things as any other kid their age. In first grade, I read the book “It’s OK to be Different” by Todd Parr and also sent home an information packet. Included in the packet was a letter from Peter to his classmates written in language that a 6-8 year old could understand, a more detailed letter to parents explaining Peter’s differences, and some of CCA’s educational materials about craniofacial issues and Goldenhar Syndrome.

As September is craniofacial awareness month and the beginning of a new school year, I think it is an excellent opportunity to talk to students and spread awareness and education about facial differences. In speaking to Peter’s class in first grade and again in third grade, I was intrigued by how the kids had matured, asked very different questions, and expressed different concerns. Now that he is going into fifth grade, I can only imagine what they might come up with! At this age, 10-12, I think a more formal presentation with photos and text promoting a healthy conversation on social and medical issues will be age appropriate. I’m also thinking that, as Jacob enters first grade this year, it might be a good opportunity to start educating his classmates too.

CCA is developing an education program aimed at helping parents speak to classrooms about craniofacial differences. If you have anything you are willing to share, I am sure the staff would love to hear from you. Let’s get a conversation going… Have you ever formally talked to other kids about your child’s differences? How did it go? Do you have any advice for other parents? What about siblings? Have you talked to their class too?


  1. When my daughter Laney was in first grade (she's 17 now!) she brought her brother Kieran (12, Apert Syndrome) to school for show and tell. She thought he was just the coolest and wanted to share with her classmates. I brought him to her class and introduced the children to him. I talked a little about how he had had surgery and how brave both he and his sister were. The kids were a delight! They asked questions, they talked about surgeries they or someone they know had gone through. It was a very positive experience, without a single negative comment. I think the fact that we were relaxed and at ease talking about everything made the kids feel the same.

  2. Josie is starting kindergarten this year (we also live in Michigan). i have a flyer, kinda like a note home for the kids. I wrote it from josie to the kids explaining her differences and how much she is just like them. I included website info for parents. I hope this helps her transition into kindergarten, i am pretty nervous about her being picked on. It was not an issue in her ecs preschool, but know in a big elementary school things are bound to he different.Kellie

  3. I'm loving the comments! Sherry, I really like the show & tell idea-- very cute!

    Kellie, I understand your nervousness for Josie starting a new school and entering kindergarten. I would encourage you to offer to speak to the class. Maybe you could go in at story time and read a book like the one I mentioned by Todd Parr. It's silly, the younger kids love it, and it easily starts the conversation going.


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