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"Confetti Skin, Beauty Within" is our blog about ichthyosis and its effect on our lives. Rachel and our three boys are affected with the form of ichthyosis called "icthyosis en confetti, type 2".

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Ichthyosis and School: Hawaii

When Cookie started kindergarten,* we ran into a problem that may families with ichthyosis have experienced — some of his classmates started picking on him because of his skin. Two kids from his class thought it would be funny to start sniffing Cookie’s neck as they walked down the hall, and then whisper to other kids that they should smell him, too.  Naturally, we called the teacher as soon as we found out. But the problem continued, even after the boys’ parents were contacted.

Ultimately, after talking with Cookie’s teachers, we decided to attempt a whole-class intervention. Our idea was to have someone come in and chat with the kids saying, “Look, see, everyone’s different! You shouldn’t make fun of people for being different!” It’s been highly recommended as a tactic for coping with these sorts of situations, so we gave it a shot. I felt that Rachel was perfect for the job. She’s not embarrassed about her skin and was perfectly able to step into the role of Show-and-Tell star. We arranged a time with the teacher and she was very supportive. We planned it to be short and sweet, maybe 15 minutes from the moment we would walk in, read the story, talk to the kids and answer questions.

It didn’t quite turn out the way we had planned.

Rachel and I showed up at the school and went to the classroom. The teacher gathered all of the children into a circle and they sat on their carpet squares. (Remember those?) Rachel and I sat next to the teacher and we read the kids a story about having differences. Then Rachel showed her hands to the kids and talked about it being something that you’re born with, just like having red hair or blue eyes or freckles. She told them that it’s okay to touch, that you can’t catch it like a disease, and that the kids wouldn’t hurt Cookie by touching him. She told them that sometimes he misses recess because it is too hot and will make him sick. And she also told them that because of our skin, we needed to spend a lot of time in the bathtub or shower each day — sometimes as much as an hour. The kids all nodded appreciatively and listened carefully.

Then, at the end, she asked if anyone had any questions.

A bunch of little hands shot in the air, and Rachel randomly called on one.

“My dad yells at my mom when she spends a long time in the shower! He says we need to stop wasting water!”

“Well, yes. But because of the way our skin is, if we don’t take a long time in the shower every day we’d be really uncomfortable. It’s just something we have to do. We need the humidity.”

Another kid started waving his hand excitedly in the air. “What is your question, Connor?” asked the teacher.

Connor grinned brightly. “I went to Hawaii on vacation last year!! It’s humid there!”

Rachel paused. “Thanks, Connor. Yes, it’s very humid in Hawaii. But we live in Chicago so it’s a lot different here. Does anyone else have other questions about my skin or being different?”

More hands. “Aidan, what would you like to know?”

“We went to Disney World for our  vacation!”

“Um…that’s interesting, Aidan. Anyone else? Emily?”

“I’ve been to Disney World, too!”

“Ok, lots of people going to Disney World. Questions about my skin? Anyone?”

“Hawaii was fun!”

“Thanks, Connor. Ok, well…Ask Mrs. ____ if you have any more questions.”

Let’s just say that when Monkey started kindergarten a few years later, we didn’t ask for a show-and-tell session with his class. Nor are we going to do it with Momo this year. It might have been a different experience with older children, but it really wasn’t that helpful with this particular age.

* Cookie started kindergarten six years ago. It’s hard for us to believe it’s been that long ago!

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