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??
Rare Mom 
I am disgusted and confused by the many levels of stupidity…seriously???
This is crazy. That parent had decided before he/she read that speech, frightened that in reality, people are different. Maybe a little narrow minded too as you wrote this so perfectly, kids would have took a keen interest in finding out why something like FOP effects sienna and them. What you are doing is raising awareness and the more people to realise, the better. Maybe that day the parent complained happened for the right reason….to make a whole load more people aware instead of a class. Maybe its people like you that were made strong enough to make us all listen x
To me this looks like a great speech to explain the condition to preschoolers. I have a preschooler myself and I would be fine with my daughter hearing this. It’s disappointing that the school allowed the concerns of one parent to prevent all kids from hearing it. The speech should have happened with parents having the option of having their kids leave the room if they didn’t want them to hear it.
I am so sorry you are in this awful position. It’s very isolating when people treat others like a pariah like that but won’t take the time to open their minds and hearts. At the same time, my wife and I have congenital conditions and she felt so betrayed as a teenager when she found out her mother used to go before her and ‘prep’ people. It didn’t matter that as a preschooler she might have needed it, but it continued into childhood.
As a parent, I can’t imagine knowing what the right thing is. I wish you all the best.
It was a beautifully written speech, and you have handled this horrible situation that a poisonous, ignorant parent created for you with amazing grace and courage. I am proud of you, and I hope she will eventually see the err of her ways and in the mean time not cause you and Sienna further emotional distress.
Schools need to meet the needs of the children, not the parents. One parent should NEVER have control over what is taught. The director needs a backbone transplant! I was the owner and director of two nursery schools with an enrollment of 120 children. I gave similar ‘speeches’ almost every year concerning allergies, diabetes, hearing impairment, physical limitations, down syndrome etc. No one complained; maybe I came wasn’t approachable! The children were fine and adjusted wonderfully. It’s the adults who can, and often do, create problems.
This is a wonderful speech and a great way of explaining a rare condition to preschool children – they will want to understand and they are also usually eager to help, but they can only do that if they know and understand. I have a preschool age daughter and I would have absolutely wanted you to give this speech in her class, so she gets a chance to learn, understand and ask questions and also so she gets the message that it is always the right way to communicate openly if you don’t understand something – only this can help them grow up into tolerant, considerate and helpfull adults. They may be little children, but parents should have more trust in their kids that age – they understand much more than many believe and and I mean that in a positive sense. They see Sienna anyways and will wonder why she is a little different – why not help them to stop wondering, to understand and help and most importantly help Sienna by doing so?
I really don’t understand how any parent could be against this. I wish you both lots of strength and all the best.
I am baffled that a parent wouldn’t want his/her kid to learn about his/her classmate! I think the analogy to peanut allergies is a good one. How dangerous would it be if we weren’t allowed to warn kids what peanuts could do to a kid with peanut allergies? I don’t think “extra bones” are any more scary than someone’s tongue swelling up and preventing them from breathing, which is what happens during anaphylactic shock from an allergic reaction.
I’m sad that this was the reaction of a parent and of the school, and I sincerely hope that every parent of Sienna’s classmates educates their children about Sienna’s rare condition so she stays safe.
You are a great mom, and I’m sure Sienna and Evey will do great at keeping Sienna safe at school, despite these setbacks.
I’d also like to spread a rumor about Sienna. I hear she’s awesome and brave and an inspiration to everyone who knows her (and quite a few people that don’t).
I would have welcomed you to my child’s class. We should be teaching our children to be understanding and accepting of All people. We are all different! This makes me so sad and I really wish the principle would have stood their ground!
I thought your speech was beautifully written, informative and completely age appropriate. It deeply saddens me that you could not present this to your daughter’s class. Please try again…don’t give up! This is so important to you and your little girl.
I worked with pre-schoolers here in the UK, age 3 to 5 years and would have been thrilled for a parent to come and speak to them with such a wonderful speech explaining about their daughter – I love the analogy to peanut butter. I cannot believe that some parents thought it inappropriate. I don’t normally comment on things I see on Facebook, but this has just made me so cross. Some people are just so thoughtless and selfish. I hope that Sienna enjoys her time at school despite these ignorant parents.
I agree with the earlier comments about one parent dictating what should and shouldn’t be allowed to be discussed in schools. Why did the school feel it was necessary to present the speech to parents first and allow them to make a decision about what is and isn’t appropriate? Children are fascinated by difference in an open and honest way and your speech wasn’t in the least bit scary. I don’t know if your schools have governors that you could approach but it might be a good way forward. I wish you all the best with getting your message out to more people as the more people here about it, hopefully the more people will donate to try and find a cure for your little girl and all the other people suffering from this very challenging illness. Good luck and don’t give up. Remember people like this parent are in the minority and most of the world would support you not thwart you.
I think it is an excellent speech. I myself have FOP. I am already partly disabled. I’m 19 and a first year student.
Rory,
You did a beautiful job.
Unfortunately there are a few parents who think if their kids don’t hear about something it doesn’t exist. The bubble you have to put around Sienna they feel they have to put around their children’s brains. I had kids writing poems as a class a couple of years ago. They had to find a word that rhymed with red and chose dead. Seemed logical to me. A parent objected. I guess if you don’t mention it, it doesn’t happen.
I’m sorry for you, Sienna and mostly the other kids, that the school didn’t back you. We have way to many schools that bow to the few loudest voices.
Good luck to you and your family. I have huge admiration for you as you continue to give Sienna exposure to all that the world has to offer. Good and bad.
Ann Fox
My son has Fop and is 37 years old. His name is Jonathan Carmichael.
Your speech had you
been allowed to give it, was so informative and so appropriate for anyone of any age.
The speech would have given the classroom a reason to be careful, allowed them to understand why they need to be careful. The classroom would have understood that Sienna is a normal little girl and they could be friends with her.
Why are adults so afraid of someone that has a disease and may look different? I am so tired of the ignorant and judgemental People. Jonathan has encountered this for over twenty years.
Your speech was very needed and I can see that you care so much for Sienna.You are a fantastic mom.
Maybe Jonathan and I can meet you at the next Fop convention.
Have a wonderful week.
Barb Carmichael
I came across this from a link on DesignMom – I just wanted to say, as a parent of a preschooler, I think you are doing an amazing job for your gorgeous girl. I am totally baffled that not only would a parent find this inappropriate, but that they would go to such trouble to prevent you from speaking! It makes me angry to think about, to be honest – how can normalizing such things for our kids ever be wrong? Should we lock them in little cages with only children who look and think and feel just like they do, so they can grow up to be ignorant and hurtful adults?
I’m sorry that you faced such opposition, but I hope it won’t get you down or make you doubt yourself. You’re doing the right thing and Sienna is lucky to have such a strong Mum.
For anyone who wants to donate to support Sienna’s rare disease, you can buy a virtual flower here: siennasflowergarden.com, for as little as $5.
some people just totally suck.
This is a beautiful speech, very well-written and clear. Just how I would want to explain this to my preschooler. It makes me sad to think that parents wouldn’t want their children to hear this. Beyond fostering awareness of your beautiful daughter, it would help them to understand that sometimes people are different, and you won’t always know why.
This is disability discrimination. Pure and simple.
Unfortunately it isn’t. The child cannot be discriminated against because of her FOP; the mother is not required to be allowed to give a speech to the class. But it is close-mindedness, both from the parents and from the school that didn’t explore other options than cancelling the speech.
I’m glad my kids go to a small school that is open minded. I have taught my girls that everyone is unique in their own way and there is no reason to treat anyone different then they would want to be treated. Too many parents are judgmental and selfish. Not sure what happened to my generation. I know my parents taught me respect. I see nothing wrong with your speech. I don’t shelter my kids and I don’t hid the truth from them. Your daughter is beautiful.
I agree with everyone here beautifully written speech totally age appropriate and so important for these young children to hear…..you explained your daughters condition in an informative but fun kind of way that ant child would understand….you gave them the tools to ask questions and respect your daughters boundaries without isolating your daughter and inviting the other children into her world and to know she still loves many of the and things they do…..I would never have objected to this in any of my kids classes …instead I would have embraced the opportunity as a teaching moment……
The only way to raise kind children sensitive to and accepting of the myriad ways all people are different is to talk openly and honestly about all of our differences. I’m appalled that this was banned. It is a thoughtful sensitive way to address Sienna’s differences and to help the children in her class help her rather than just keep their distance.
Sheltering our children from the things that “might” make them uncomfortable is no way to raise thoughtful citizens of humanity.
I’m so sorry that this happened to you!
I have a 4-year old daughter in preschool and your speech makes total sense to me and seems completely age-appropriate for small children. I don’t understand why “extra bones” part is scary or offensive. I think my daughter would have lots of questions but I don’t think she would be scared. I am so saddened that you were not supported in your efforts to inform the children.
I would have been completely happy to have a mom come to my 5-year-old daughter’s K class with this speech. It is age and level appropriate and presented in a straightforward, not scary manner. I suspect it was a vocal few who got your speech banned–probably because it scared them. Shame on them for depriving their children of an opportunity to learn about how to handle differences in an appropriate way. And shame on the school for not exploring other avenues (such as those you mention–opting out, changing the speech) before refusing the opportunity.
So strange – there’s nothing objectionable in your speech. Those parents must just object to their kids hearing about bad things, period. But if kids must never hear about illness or suffering, by logical extension they probably shouldn’t interact with people who are ill or suffering, either. What a horrible worldview – hopefully the kids in Sienna’s class are nicer than their parents!
This is a wonderful speech! Well done. I’m sorry you weren’t allowed to share it with the classroom.
The speech was wonderful I thought. I’m so sad to hear that a parent at her school actively made things difficult for your daughter and family. It’s beyond my comprehension why people act like that, do things that are so hateful and harmful to others, children. Good for you for trying to pave a happy, healthy way for your daughter. I hope going forward you and your family are met with grace and love not ignorance and fear.
This is a beautiful, thoughtful and totally appropriate speech. Shocking and so sad that you were unable to give it. Shame on the parents that prevented that.
I’m so sorry to hear about your experience. Your speech was seemed really thoughtful and age appropriate. I’m unsure what the parents were thinking. As someone who works with people with disabilities awareness is something that is key in helping people understand. I think you need to push to the administration that the kids in the class need to be aware of what’s going on in a way that’s loving and transparent but still empowering to Siena.
I teach preschool (4 year olds) and I have no problem at all with this speech. I think it’s incredibly important for so many reasons that your daughter’s classmates should hear this. If I was the teacher, I would be heartbroken that you weren’t allowed to talk to my students.
As a preschool teacher I am sorry you were not allowed to give your speech. We would have encouraged a parent like you in our class. As a parent, the other parents should have stood up with you and pressured the school to educate everyone on how to keep a child with some special needs safe. You were doing the right thing.
I am sorry you weren’t allowed to give your speech. I think it did have some language that would be confusing to a 4 year old, (not frightening) but you should have been allowed to give some form of the speech to the children. As a parent I would have appreciated it.
I find that if you take the scary out of something, like you were attempting to do, kids can be accepting and simply say, “oh,” like it is no big deal. They pick up on the fear once someone else tells them it is something to be afraid of. Sorry you have to deal with people and their fears. But your daughter is going to overcome this. She is a person who moves in grace and style. People want to get to know her.
I thought your speech was great! The only thing I can even imagine is that the offending parent is or has someone near to them that did something like change their gender. I don’t think it was the “extra bone” part that upset them. The parent has just explained to the child that so and so decided to be a girl instead of a boy or something like that. Then having you tell the class that in reality it’s genes that determine these things would cause the parent a lot of uncomfortable questions. And they didn’t just opt our because they were afraid of the other kids talking about it with their child. It’s sad, and people are strange. But this is the only thing that makes even a little sense as to why someone would ban it. I hope your speech reaches millions!
I had the same thought. I agree with every bit of this great speech, but some people may take the sentence, “Genes make us boys or girls,” to be untrue. That was the only part I could see someone having issues with.
I’m a teacher and if Sienna was in my class, I would tell the kids about Sienna. You should definitely appeal this decision, or go to the media.
I am a teacher and a parent and that speech is fine for kids. People are so crazy and making things harder for their kids and yours by keeping them in the dark. There is so much wrong with the fact that you could not advocate for your child!
Mrs. Otto,
You have a beautiful daughter and wrote a wonderful, completely appropriate speech. I’m shocked and saddened that some parents of your daughters classmates would be so ignorant and cruel to make such a fuss. And sad you have to deal with adults who would actually spread rumors about a child.
My youngest is in 1st grade this year and has a classmate and friend who has a classroom aide. His disability was explained last year when they were in Kindergarten together. It was wonderful to inform and educate the children not only on his need for a wheelchair and a helper, but also on his interests and hobbies. I think children would be perfectly capable of understanding your thoughtful speech; and agree that bullying is often rooted in ignorance. Thank you for sharing your story, and yes, Sienna’s back to school photo is adorable.
It is hard to comprehend why a parent would not want to understand more about your daughter let alone help their child who is her classmate, to better understand. Your speech is is now getting read more widely than it would have otherwise been which is ironic but perhaps a good thing too. Sadly your delivery and this audience are not what Sienna needs. Is it possible to mail it to the parents to share with their children? Better still can the child of the complaining parent, be removed from the room when you deliver it in person to the class. (via Design Mom).
I think this is a great speech and I would’ve been 1000% for you to speak at my son’s school. That other parent is a looney. Also, since you mentioned that there are rumors being spread about a four year old…I would file a lawsuit for slander. Someone should teach these assholes a lesson.
A few thought:
1- I have 4 young sons and would love them all to hear this speech.
2- Those parents were totally out of line.
3- The school was out of line for giving them a copy of your speech. They should have contacted you.
4- You did an amazing job at the speech—- appropriate for all ages, informative, and brief/ to the point.
5- Ultimately teachers are in charge of what goes on in their school. This was to help the children learn about another child. Had the speech been about asthma or allergies I bet that parents would be fine. You should not have gone through this. Ridiculous.