As a parent of a child with BPES, I strive to be her number 1 advocate. As we get ready for kids to start the new school year, I've thought about what I want to tell her teacher. With some feedback from a few parents of kids with BPES, this is what I've come up with. Please comment with other ideas or feedback!
-Anela
-Anela
Dear Teacher of student with BPES,
I’m happy you’re here to better understand one of your students who has BPES (Blepharophimosis Ptosis Epicanthus Syndrome). I am a parent of a child with BPES and a teacher myself, and I’d love to share a few things about your student. And as you know, every person brings their own unique experiences, perspectives, and expectations. So, please continue to the amazing work you do to meet the many unique needs of your likely oversized classroom.
You can certainly peruse this website to learn more, but the gist of it is, this is a genetic syndrome that may or may not have been passed on by parents. People with BPES generally go to a specialized ophthalmologist once or twice a year. Some have surgery as young as at 6 months of age to open their eyelids wider, but some don’t do any surgery. Some people have a vision prescription, but many also have perfect eye sight. Some come from families with dozens of people with BPES, and some, like me, are learning about it the first time with the birth of their child with these special eyes.
First, it’s important you know that there is no correlation of mental ability or lack there of with this syndrome. People with BPES have a unique appearance and may have a smaller field of vision, but they are creative, smart, and capable. If they have a learning difference please treat them as any other child to provide accommodations and service.
Please do not assume that your student with BPES can’t see or needs to sit in the front of the room. Just like any child, this one may or may not have a prescription. If they wear glasses, they may need your support in not losing them! Some people with BPES have sensitivity to light and may wear sunglasses or a hat on the playground.
These kids and their families are used to people’s curiosity and by they time they get to school; they likely have a stock answer like “I have special little eyelids and can see just fine, let’s go play” or “no, I’m not blind, I have BPES” or “no, I’m not sleepy, God gave me smaller eyelids,” etc. However, the journey of a child to understand oneself, this difference, and how to navigate social challenges that emerge in schools is something each family is likely working on and may want your help if their child is struggling.
The fact that you’re reading this shows that you are a stand out educator who cares about each of your students. You likely worked a bit over the summer and it’s likely the weekend right now as you put in the extra time to create a healthy learning environment for your classroom.
Thank you for your time!
Anela
(parent of child with BPES)
I’m happy you’re here to better understand one of your students who has BPES (Blepharophimosis Ptosis Epicanthus Syndrome). I am a parent of a child with BPES and a teacher myself, and I’d love to share a few things about your student. And as you know, every person brings their own unique experiences, perspectives, and expectations. So, please continue to the amazing work you do to meet the many unique needs of your likely oversized classroom.
You can certainly peruse this website to learn more, but the gist of it is, this is a genetic syndrome that may or may not have been passed on by parents. People with BPES generally go to a specialized ophthalmologist once or twice a year. Some have surgery as young as at 6 months of age to open their eyelids wider, but some don’t do any surgery. Some people have a vision prescription, but many also have perfect eye sight. Some come from families with dozens of people with BPES, and some, like me, are learning about it the first time with the birth of their child with these special eyes.
First, it’s important you know that there is no correlation of mental ability or lack there of with this syndrome. People with BPES have a unique appearance and may have a smaller field of vision, but they are creative, smart, and capable. If they have a learning difference please treat them as any other child to provide accommodations and service.
Please do not assume that your student with BPES can’t see or needs to sit in the front of the room. Just like any child, this one may or may not have a prescription. If they wear glasses, they may need your support in not losing them! Some people with BPES have sensitivity to light and may wear sunglasses or a hat on the playground.
These kids and their families are used to people’s curiosity and by they time they get to school; they likely have a stock answer like “I have special little eyelids and can see just fine, let’s go play” or “no, I’m not blind, I have BPES” or “no, I’m not sleepy, God gave me smaller eyelids,” etc. However, the journey of a child to understand oneself, this difference, and how to navigate social challenges that emerge in schools is something each family is likely working on and may want your help if their child is struggling.
The fact that you’re reading this shows that you are a stand out educator who cares about each of your students. You likely worked a bit over the summer and it’s likely the weekend right now as you put in the extra time to create a healthy learning environment for your classroom.
Thank you for your time!
Anela
(parent of child with BPES)
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