Classroom Talk by a Child with FOP
Hello my name is sienna otto.
Many of you may know me already.
Just like no two snowflakes are alike, none of us are exactly alike.
I have some special care needs. I’m a little more delicate than the rest of you.
So I skip some activities that could be dangerous, like running or wild activities in gym.
I like to say that I’m allergic to bumps.
You can help keep me safe by:
- Giving me extra space when possible
- Don’t be too rough around me
At recess, I do calmer activities like nature walks. I would welcome the opportunity to play with each of you!
It’s important for everybody to follow the school rules, especially my class – such as:
- no running in the classroom or halls
- clean up toys or tripping hazards on the floor
- Make sure chairs are always pushed in when possible
I have an aide, Mrs. Davey, who is here to keep me safe. Many of you may know her already!
I love animals. I have a dog named Pepper. Pepper is a girl dog. Pepper loves to give me kisses.
I also socialize puppies for Guiding Eyes for the Blind in my spare time! The breeds are labs and german shepherds.
Classroom Talk by the Parent of a Child with FOP
Hello, my name is Mrs. Otto. I’m Sienna’s Mom. Thank you for welcoming me to speak with you about something important to me, to Sienna, and to our family.
2 years ago, we found out Sienna has a rare genetic condition called Fibrodysplasia Ossificans Progressiva. That’s a very long and complicated sounding name isn’t it?? We call it FOP for short. There are only a few people in the world that have FOP. They live all around the globe.
Have any of you heard of genes before? We are ALL born with genes inside us that help to make us who we are, inside and out. For example, I have blue eyes - I have a blue eye gene inside me. Genes make us boys or girls. Genes can make us tall or short, give us light hair or dark hair, and maybe even determine how fast we run! Sometimes genes determine conditions for people, like by making them allergic to certain foods. Does anyone know someone who is allergic to something? (My good friend Shannon is allergic to peanut butter). Or does anyone know someone who is diabetic? They need to be careful with sugar.
Some of these are examples of things you can see. But some are things you can’t see, so people need to tell you about them for you to know how you can help. For example, I didn’t know my friend was allergic to peanut butter until she told me, and then I knew not to eat it near her so I could help keep her safe.
And you can’t tell by looking at her, but Sienna has EXTRA BONES in her body. If you had an X-ray machine or X-ray vision, you would be able to see them. Do any of you have X-ray vision? (wait to see if anyone does J) But what all of you can see is that sometimes she moves a little differently than many of you. She sits up nice and tall because she has extra bones in her back.
FOP bones are just like regular bones except they grow in the wrong places.
And because of the extra bone, certain things are a challenge for Sienna. Maybe you noticed that she can’t raise her hand as high as you can. This is because there is extra bone in her shoulders. Sometimes she has trouble bending down to pick things up, because she has extra bones in her back.
And I need all of you to help me keep Sienna safe. If you had a friend who was allergic to peanut butter, what would you do? (wait…) Right! You would keep peanut butter away from him or her, to keep them safe.
Well, if Sienna falls down, it can cause the extra bone to start growing in places that it shouldn’t, which can cause her lose her range of motion. So Sienna shouldn’t fall at all. You can help me by:
- Never pulling on her arms because it can hurt her
- No rough play around Sienna because she may fall
- Not pushing Sienna because she will fall
- If Sienna does accidentally fall – go and get Ms. Evey or a teacher
What do you think? Can all of you be my helpers??
Ms. Evey is Sienna’s aide – she is here to help Sienna whenever she needs her assistance. You will also see Ms. Evey doing things for your teachers or even helping other students in the class.
If you have any questions, please ask me, or feel free to ask Sienna. She can tell you about her bumps and what she can’t and can’t do. And you know what else Sienna knows a lot about? Puppies and flowers. If any of you want to talk about puppies or flowers, definitely go talk to her! Does anyone have any questions??