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?