It’s been a tough year in 5th grade for 10-year-old Josh. He’s been struggling internally about who he is and the condition he has, according to his mom, Chelsea Horan. Josh is affected by hypohidrotic ectodermal dysplasia, a rare genetic disorder.
“Josh has been struggling a bit this year with talking to his peers who are more social confident and ‘sporty’”, Chelsea said. “He said that a lot of the boys he was close with in younger grades are now in competitive sports leagues. They are more aggressive on the playing field at recess. He says he sometimes feels left behind by his friends and doesn’t know how to engage with some of them anymore. Josh has really started to feel the isolation of his difference internally. He says he’s well-liked by his peers and no one mistreats him, but that he often feels lonely being the only one with ectodermal dysplasia.”
But that recently changed. He and his classmates had to research a topic and educate the class about it. Josh stood in front of his classmates and gave a speech about ectodermal dysplasia.
“I was really nervous! I thought people might laugh or think it was lame.” – Josh
Watch Josh Shine
“This video is Josh giving his speech in class! It’s SOOOOOO worth watching. My brave, brave, sweet boy nailed it!” Chelsea gushed.
They definitely didn’t think it was lame. Instead, his peers were all very kind and encouraging, his mom said. Josh said the kids all paid close attention to him and were all glad to hear about him.
“He was on cloud 9 after his presentation!” Chelsea said. “He realized he has the power to educate people and remove the ‘stigma’ of differences just by talking and being open about himself!”
Chelsea has always openly discussed ectodermal dysplasia with the other parents and the school. But, this was the first time that Josh took charge of the education.
They were all smiling at me. I felt GREAT! I think it helped me a TON. It felt really good to let it out and speak to my class so everyone is aware of what my condition really is and so no one will be afraid of me! – Josh
Learning What To Say
What do you say if you are a kid who has a rare disorder with a really hard name to pronounce?
Most students are uncertain about what to say to their peers about the fact they are affected by ectodermal dysplasia. They may be nervous about how it would impact their friendships and relationships with classmates.
“Like most of us, Josh does not enjoy public speaking!” Chelsea said. “He started showing some real signs of anxiety over it in and even made himself sick with worry a few times. Knowing how personal this topic was for Josh did make me a little nervous, but I could tell he was determined to be successful. I knew he would do well. However, when I actually watched the video of him giving his speech, I filled with so much pride and joy at how well he did!”
If you are worried, you are not alone. Check out our new library resource on developing a plan for how to talk to your friends and classmates.
Hand Them Your Card
How you tell your peers might change as you enter junior high or high school. You may not want to share how you did when you were younger. Or, you may want to explain in a different way. And that’s ok.
Some tweens and teens have handed out a small card with information about ectodermal dysplasia that the NFED can provide.
Karynlee Berstecher said her now adult son, Adam, created such a card in middle school.
We took bullet points off the NFED web site and added the NFED link. The cool thing about the card is that it took the social awkwardness out of the situation and opened up conversation. It was great! – Karen
Gina Quintanar said handing out a card was the perfect for her son, Alex, when he was a shy first grader.
“We made a card that said, ‘I don’t sweat the small stuff. In fact, I don’t sweat at all.’ It also had a link to the NFED. He handed it out at school and out of school. It was something that gave him power if a child – or an adult – was staring at him.”
Gina said she also gave the cards to teachers and principals. She put her phone number on the card in case they ever needed to reach her.
It’s Your Story
As you can see, there are lots of ways to tell your peers about ectodermal dysplasia. It’s important to figure out what is best for you. We know one thing for sure. The story is yours to tell. And it’s a powerful one. It’s up to you for how, if and when to tell it!
Chelsea knows first hand the Josh benefited from telling his story.
“Not only did he choose a topic that is near and dear to our hearts, but he did so in an effort to bring awareness to his classmates about what makes him unique and special. He displayed such confidence in his delivery and mannerisms that I almost forgot about the struggles he once had. I’m so proud of Josh and I really can’t wait to see what he will accomplish in his life!”