I used to be afraid to speak in public.
I also used to be bad at it. It was one of my official career “opportunity areas” about 3 years ago. So I took a public speaking class. I presented to my dog at home (who never laughs at my jokes, though she also never asks hard questions). I read bedtime stories to Sienna as if I was presenting them. I improved, presenting to larger crowds at work, eventually presenting my strategy work to hundreds of my colleagues. Since moving to New York last year, I have had the opportunity to present regularly at work and even had the opportunity to speak to our entire company about driving change (about driving change for Sienna in my personal life and the parallels to how our amazing employees are driving change at work). Fear conquered!
I was set to give a new speech this Friday.
It was a new challenge and one I have never taken on before: speaking to Sienna’s class of 4-year-olds about Sienna and FOP.
As a reminder, FOP (Fibrodysplasia Ossificans Progressiva) is an ultra-rare disease impacting 1 in 2 million, where muscles and other soft tissue turn to bone, progressively restricting movement. You can learn more about FOP and Sienna at http://www.siennasflowergarden.com.
I started with a draft that has worked well for other FOP parents and made modifications to tailor it to Sienna (most FOP parents speak to their children’s classes and some even speak to the entire school in a general assembly). Before school started, I shared my draft with the school director and Sienna’s two teachers, who approved it and thought it was wonderful. Together, we decided that the best time to give the speech would be at the end of the first week of school once the kids are settled in their routine, and that we would send a note to parents as well so that everyone could be informed.
I am a very strong believer in the power of information and speaking to Sienna’s classmates is important. The kids need to know why Sienna has an aide in the class and that they should not roughhouse with her. We aren’t asking the 4-year-olds to be responsible for her safety, but I want to let them know why her aide won’t let her do certain things because kids are curious. Bullying so often comes from being uninformed.
For the first time in a long time, I was a little nervous about a speech. What would it be like to speak to a room full of 4-year-olds? Would they sit still? Would someone get my joke and volunteer that they have X-ray vision?
Unfortunately I will never find out because this speech was banned.
It seems that one parent saw that Sienna had an aide in the classroom and demanded information from the school, learned I was preparing to give a classroom speech, was given a copy of it, shared with with other parents, and it was deemed inappropriate. So despite all my careful planning and pre-approvals, and rather than allowing concerned parents to opt their children out of hearing it, I was prevented from giving this speech or any modification of it to the children. Apparently hearing that Sienna has “extra bone” is too much for children to handle. (Try living with it, people!) And despite my desire for honesty with the children, I would have been ok taking out the “extra bone” line or cutting it extremely short and just telling the kids that Sienna is delicate so her aide is there to protect her. Instead we sent a short letter to parents including my contact information for any questions, and crossed our fingers that they communicated something to their children.
There is more to this story including rumors spread about Sienna, but let’s just stick to the speech today. I still believe in the school and the teachers and I hope that any concerned parents come to me for information.
Since I put this speech together (borrowing from other wonderful FOP parents’ speeches so I can’t take full credit!) and it will no longer see the light of day, I wanted to share it.
I also want your opinions. Is this content inappropriate for children? Would you ban this at your school? Is this not the cutest back to school photo at the end of this post? 🙂
Warning: this speech was banned and apparently contains information inappropriate for children.
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…) 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.
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. So Sienna shouldn’t fall at all. You can help me by:
o Never pulling on her arms because it can hurt her
o No rough play around Sienna because she may fall
o Not pushing Sienna because she will fall
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??