Hello! I am Laurel Wiest.
I am 12 years old and going into the 7th grade in middle school. I have ectodermal dysplasia. The defect is in the TP63 gene for me and as of now, my type is unknown. I was diagnosed at eight years old. How it affects me is that I have trouble cooling off. I can’t make tears and I have to use eye drops many times a day. At night, I need to use antibiotic eye medicine. When I get sunscreen or something in my eye, it is really painful, but I use my eye drops and to get it out.
Teaching Your Teachers
School can be difficult because teachers are not born knowing everything. And chances are because you have ectodermal dysplasia, and it is rare, your teachers may not know about it. So, don’t be shy about educating your teachers and explaining what you have. There is no shame in looking different then everyone. Help your teachers understand so they can better understand how they can help and make the school year easier! I talk to my teachers about it a lot, especially when it is hot outside. My mom sometimes calls school and talks to the school nurse or teachers.
I have an IEP which stands for Individualized Educational Plan. Sometimes, it can make you feel not smart. Sometimes, the teachers are patronizing to me, meaning they speak or behave toward me in a way that seems friendly, but that shows that they are superior in some way. What is an IEP supposed to do? An IEP is a legal document given to your school and your teachers and is personalized to someone with specific academic needs. On my IEP, it said I need more time in math and that I have to take my tests in a different room.
How I Manage PE
Physical education (P.E.) class at my school is held outside on hot days. I can’t sweat so here are my top ways to stay cool and some P.E. tips! I recommend that you get a fan and take it to P.E. It can be either a water spray fan or a cooling fan or both. I love going outside and P.E. in general. My favorite outdoor activity in P.E. is volleyball. Volleyball can be indoors or outdoors. Sometimes I sit out but a lot of the time, I play. I also play volleyball outside of school at the Boys and Girls Club.
Kids Can Be Mean
People are mean sometimes. I deal with people who are mean by ignoring them. I tell my mom because she is my mom and can help. Their meanness is nothing to me but only hurts them. It proves they are not nice people. You can set an example by being a bigger, better person. Sometimes, I stand up for myself. I have no problem if I need to put them back in their place. The truth is you have to be ok with who you are so maybe do some affirmations or even smile at yourself in the mirror.
I love the school I go to, and I love all my teachers. I had the best school year ever!
No matter what grade you’re in or school you go to, remember you are amazing.
You have a great personality. Just smile and be nice because you are more than just your condition. Ectodermal dysplasia is just your condition, it does not define you or make up your whole personality.
- Laurel is a guest blogger who lives with her parents, Melanie and Mark Wiest, in Virginia.
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