#FaceEqualityWeek2019 Rewind: Stared Into Funkville

Photo Credit: Kara Jackman

Editor's Note: Jenna writes thoughtfully about a recent staring experience on public transportation. This story really demonstrates the need for a global understanding of facial differences, which is what we are all striving for during #FaceEqualityWeek2019. Nevertheless, Jenna finds a way through what was a tough morning thanks to her friends, family, and CCA. This post was originally published on the CCA Kids Blog at the end of December 2018. It received 4,223 views. Clearly, it resonated with our CCA family.
By Jenna Ottow
My day started out like it normally does.  I take a 25-40 minute train ride, depending on the day, from my apartment in Malden into downtown Boston where I work.  I get on at the second stop on the line so the train is usually fairly empty. As the train choo-choos along people pile in.  By the time it gets to North Station, a connecting hub, it’s jam packed. I usually enjoy the commute. I have a playlist I listen to, sometimes a podcast, but mostly I let my brain wake from the slumber of sleep to the bustle of the busy day ahead.  It’s a process.

On this particular morning, I was able to find a seat where I sat listening to whatever humdrum was playing in my ear as the other passengers milled around me.  I surveyed, like I’ve seen other riders do, not really looking at anything in particular, but changing the scenery with the tilt of my head. It was then that I could feel the stare.  A hard stare. Most of the time I don’t even notice it, especially when I am on foot. However, sitting still on the train it was hard to avoid and impossible to ignore. I was born with a rare, craniofacial birth defect called Apert syndrome that causes

onlookers to look.  They not only look, but they stare, point, sometimes name call, which happened lots when I was younger. Now, as an adult, I just avoid eye contact all together. This was not the case this morning on this train.  I was uncomfortable. I glanced over at my ‘admirer’ like a reflex. It was a younger woman, mid-20’s, headphone chords coming out of her ears and sunglasses resting upon her head, chomping on gum between her pearly whites, which I fantasized punching out. There she was...staring.  I smiled, politely, not really in the mood to exchange much more than a nod, then I looked away. I fumbled with my phone for the next song on the playlist. I’d like to tell you it was something inspirational like ‘Born This Way’, by Lady Gaga or ‘The Way You Are’ by Bruno Mars because that would have been terribly ironic and a bit sappy, but it wasn’t.  When the next song started I felt her stare again, look, and then look away. I was losing patience and suddenly felt so small. Thankfully, my stop arrived moments later. I was able to shuffle off of the train, wishing I could be another anonymous face in the crowd, but instead I knew I stuck out like a sore thumb.

Normally the “stares” don’t bother me.  Today it did. Like I said, when I’m on the move I don’t even notice them.  There is quite literally nothing I can do to change the way I look. Sadly, we live in a society where if you look slightly uncharacteristic than the rest of the population you are an anomaly that deserves every gawk, gape, stare, and judgment that’s sent your way.

I found myself in a funk for most of that day.  This state was a personal struggle. I don’t like to live in “Funkville.”  I am overall a fairly happy person, approachable, laid back, and friendly. But that day, I was in a funk.  I didn’t really want to talk to anybody. I was moody. Annoyances found me at every task, and well, I was just sad.  A lump lived at the back of my throat, taunting me to start weeping at any given moment throughout the work day. I couldn’t. I needed to be professional, I needed to stay composed and focused.  Bursting into tears in front of co-workers would ironically make me look…weird! I reached out to my partner towards the middle of the day. He’s literally one of the only people on the planet I know who knows how I feel. He too has Apert syndrome.  He’s been on the receiving end of the stares, the gawks, and the whispers. He’s felt the hurt. It’s literally the foundation of our relationship. He, of course, was comforting. Finding himself in similar or identical situations, he was able to empathize and agreed that this was indeed “Funkville” and it was okay for me to stay there. He validated my feelings. Sometimes that is all we really need to make it through tough emotions.  

The next day came, and so did the stares, as expected.  For some reason I didn’t find myself as effected, but there they were, and there they will continue to be.  Knowing that I can let those beady stares roll off my back is a comfort, but knowing that I can travel to "Funkville" for solace is almost as redeeming.  

Stared into Funkville

Photo Credit: Kara Jackman

By Jenna Ottow
My day started out like it normally does.  I take a 25-40 minute train ride, depending on the day, from my apartment in Malden into downtown Boston where I work.  I get on at the second stop on the line so the train is usually fairly empty. As the train choo-choos along people pile in.  By the time it gets to North Station, a connecting hub, it’s jam packed. I usually enjoy the commute. I have a playlist I listen to, sometimes a podcast, but mostly I let my brain wake from the slumber of sleep to the bustle of the busy day ahead.  It’s a process.

On this particular morning, I was able to find a seat where I sat listening to whatever humdrum was playing in my ear as the other passengers milled around me.  I surveyed, like I’ve seen other riders do, not really looking at anything in particular, but changing the scenery with the tilt of my head. It was then that I could feel the stare.  A hard stare. Most of the time I don’t even notice it, especially when I am on foot. However, sitting still on the train it was hard to avoid and impossible to ignore. I was born with a rare, craniofacial birth defect called Apert syndrome that causes

onlookers to look.  They not only look, but they stare, point, sometimes name call, which happened lots when I was younger. Now, as an adult, I just avoid eye contact all together. This was not the case this morning on this train.  I was uncomfortable. I glanced over at my ‘admirer’ like a reflex. It was a younger woman, mid-20’s, headphone chords coming out of her ears and sunglasses resting upon her head, chomping on gum between her pearly whites, which I fantasized punching out. There she was...staring.  I smiled, politely, not really in the mood to exchange much more than a nod, then I looked away. I fumbled with my phone for the next song on the playlist. I’d like to tell you it was something inspirational like ‘Born This Way’, by Lady Gaga or ‘The Way You Are’ by Bruno Mars because that would have been terribly ironic and a bit sappy, but it wasn’t.  When the next song started I felt her stare again, look, and then look away. I was losing patience and suddenly felt so small. Thankfully, my stop arrived moments later. I was able to shuffle off of the train, wishing I could be another anonymous face in the crowd, but instead I knew I stuck out like a sore thumb.

Normally the “stares” don’t bother me.  Today it did. Like I said, when I’m on the move I don’t even notice them.  There is quite literally nothing I can do to change the way I look. Sadly, we live in a society where if you look slightly uncharacteristic than the rest of the population you are an anomaly that deserves every gawk, gape, stare, and judgment that’s sent your way.

I found myself in a funk for most of that day.  This state was a personal struggle. I don’t like to live in “Funkville.”  I am overall a fairly happy person, approachable, laid back, and friendly. But that day, I was in a funk.  I didn’t really want to talk to anybody. I was moody. Annoyances found me at every task, and well, I was just sad.  A lump lived at the back of my throat, taunting me to start weeping at any given moment throughout the work day. I couldn’t. I needed to be professional, I needed to stay composed and focused.  Bursting into tears in front of co-workers would ironically make me look…weird! I reached out to my partner towards the middle of the day. He’s literally one of the only people on the planet I know who knows how I feel. He too has Apert syndrome.  He’s been on the receiving end of the stares, the gawks, and the whispers. He’s felt the hurt. It’s literally the foundation of our relationship. He, of course, was comforting. Finding himself in similar or identical situations, he was able to empathize and agreed that this was indeed “Funkville” and it was okay for me to stay there. He validated my feelings. Sometimes that is all we really need to make it through tough emotions.  

The next day came, and so did the stares, as expected.  For some reason I didn’t find myself as effected, but there they were, and there they will continue to be.  Knowing that I can let those beady stares roll off my back is a comfort, but knowing that I can travel to "Funkville" for solace is almost as redeeming.  

Confronting & Resolving: One Approach to Bullying

“It is in the whole process of meeting and solving problems that life has meaning. Problems are the cutting edge that distinguishes between success and failure. Problems call forth our courage and our wisdom; indeed, they create our courage and our wisdom. It is only because of problems that we grow mentally and spiritually. It is through the pain of confronting and resolving problems that we learn.” --M. Scott Peck

Confronting & Resolving: One Approach to Bullying

by Sabrina Robineau 

Junior High is an exciting, yet nerve-wracking time in an adolescent’s life. It’s a whole different world that comes with new opportunities and challenges. However, nothing could have prepared me for the challenge that I was about to face on my first day of Junior High….

First of all, I have to note that I was very fortunate in elementary school. I had many friends and everyone knew who I was. Every time I had surgery, I would receive get-well cards from all the classes. School was my safe place; I was sheltered from the stares and teasing. It was my escape from the discrimination I faced in the outside world.

When I was 12 years old, it came time to enter a new school. I was more excited than nervous because I now had independence. Junior High felt so  'grown up.’ I also still felt safe because some of my friends from elementary school would be there. On the first day, we were assigned to our homeroom. I excitedly looked at my schedule and explored the hallways until I found the classroom. I’ll never forget how it felt when I first walked in. It suddenly became very quiet as all the students stopped talking and turned to look at me. I figured “oh they’re just looking because I’m the last one to walk in.” As I sat at a desk, I noticed that they weren't just looking -- they were actually staring at me. Some students were whispering to each other and snickering. I thought to myself “what is going on here? This has never happened in school before!” – what was once a safe place for me, would soon become a place that I hated.

Not only was I stared at in class, but in the hallways as well. I remember that gnawing feeling I had in my stomach as I passed by the lockers. Students would be whispering, pointing and staring. I tried to ignore it and focus on the friends from my old elementary school. I figured the stares would eventually go away. Unfortunately, it continued on for weeks. Finally, I decided “enough is enough!” I couldn't take it anymore. I wanted to feel comfortable at school again. Therefore, I set up a meeting with the guidance counselor. I told her that how desperately I wanted everyone to know that I’m still the same as everyone else, even though I look different. Unsure of what to do, we went to see the principal. She suggested that I go in front of every class and talk about Pfeiffer Syndrome and answer any questions they might have. Some people might ask “Wow, weren't you shy to do that?” – Surprisingly, I wasn't nervous at all. I was so determined to speak up and show everyone the real me. I wanted them to see that there was nothing to be afraid of.

The following day, the principal and I addressed our first class. It was intimidating to face the students, but I kept my head up high and proudly talked about my syndrome and what I’d been through. To my surprise, I got a very pleasant reaction from the students! They were interested in what I had to say and they asked many questions such as, “Does Pfeiffer Syndrome affect your intelligence?” (It does not.) I received the same positive reaction from all the classes. I began to realize that the students were not staring just to be mean … they were only curious. They were faced with the unfamiliar and they didn’t know how to react. They did not have the knowledge to understand why I looked different. 

When I went back to school the next day, my world was completely changed. Instead of getting stares and whispers; I got big smiles and waves, “Hi Sabrina!” – There was no more hesitation or wondering “Why does she look like that?” I made new friends and school became my safe place again.

What would have happened if I never had the courage to speak up? Nothing. Nothing would have changed. I would have continued to be stared at. I would have spent my 2 years at Junior High being miserable. I am so thankful that I had the support of the principal who encouraged me to face the students. Once I educated them about Pfeiffer Syndrome, it was no longer unfamiliar to them. I told the students to never judge a book by its cover because it’s what on the inside that counts!

Forgive Your Bullies, and Forgive Yourself Too

Our second post in our #EndBullying series is a reblog from The Washington Post's Kiley Bense.

Bense takes a look at the tendency for the bullied to become bullies or participate in bullying, even while they are victims themselves. The complexity of this issue makes it hard to recommend specific courses of action because the solutions truly lie in all of us understanding ourselves better so we can respond effectively to each situation and model assertive behavior.

Below are excerpts from Bense's article, but you have to read the whole post ... and see the photos.

As a kid, I was bullied. But I bullied, too. Does that make me a victim or an aggressor?
by Kiley Bense

As a child, I’d been a fearless know-it-all. In my teen years, I sank into myself. I became defensive and prickly, slinging sarcasm and insults to fend off teasing. Insecurity chewed away my confidence. I began to expect that any interaction with a peer was doomed to end in humiliation.

***

More than the tales we tell about others, the stories we tell about ourselves are only half-truths. Sometimes we’re trying to protect ourselves; sometimes we discard memories (purposefully or not) that don’t fit the person we’ve become or would like to be. But there are always traces of editing and rearranging, the fingerprints of time and interpretation.

***

I can’t deny that there’s pleasure in feeling fellowship with a group bonded against a common enemy, however opaque your reasons for that aggression may be. The fact is that human beings relish a witch hunt. We love a mob scene. We can’t wait to lob our frustrations at figureheads.

Most kids, like most people, aren’t ringleaders; they’re just swept up in the clamor and pull of the crowd. They are afraid that if they protest they will become the target instead. Middle schools, full of the vulnerable and shame-faced, are ruled by this fear, and so once was I.

***

The world isn’t neatly divided into bullies and the bullied; all victims conceal sins, and all villains carry sorrows and scars. You won’t be able to avoid being both, though you don’t have to be both in equal measure. You aren’t defined by the gap-toothed oddball that you used to be, no more than the classmates who tattooed those words on your brain space are defined by the rude face they turned on you.

Forgive your bullies, and you forgive yourself, too.

---
Check out the full article here: http://www.washingtonpost.com/posteverything/wp/2015/01/27/as-a-kid-i-was-bullied-but-i-bullied-too-does-that-make-me-a-victim-or-an-aggressor/

Media Monday: Lizzie Velasquez

Today's Media Monday post comes from Lizzie Velasquez, a motivational speaker and person with physical differences. I love Lizzie's story: She made her haters her motivators. Sure, anyone can say it but Lizzie lives it and proved it to be a successful philosophy.

I hope you'll watch her TEDx talk and feel inspired to take charge of your life. Her poise is truly skillful. I'm taking notes!



Lizzie also gave a talk aimed at children and teens.



Thank you Lizzie, for your commitment to positivity and progress. Kudos to you!

-Erica

Media Monday: Sarah Atwell's Message

Gotta love her t-shirt: "Just Ask!"

Today's Media Monday post is a viral video that 17-year-old Sarah Atwell published online to share her story. Sarah has NF and reports being bullied since 5th grade. While her story is heart wrenching, it is also inspirational. Today, we celebrate Sarah's voice, her courage, and her strength.

A Discovery Fit & Health special will air about Sarah's journey on December 18, 2013 at 10pm (EST). As some CCA families have also experienced, agreeing to film a show doesn't mean you'll get to choose the title. Unfortunately for Sarah, "Girl with Half a Face," is not the title she would have chosen, but I think we can all agree that Sarah has a beautiful, full face! At CCA, we know there is no definition or standard of beauty. As for me, "I like different." I like different faces, I love furniture that others would discard as "scratch & dent" because it has richness and character, and confidence creates its own attraction. I think many of us in the cranio world agree, facial differences are beautiful, intriguing, and inviting. As we form a critical mass of folks who like different, we are the change in the world we wish to see.

For more info on Sarah's story, check out this link: The Chronicle Herald

--Erica

The Importance of Educating

Imagine a world where everyone knows what a craniofacial syndrome is; a world where a child with a craniofacial condition is able to play at the park without getting stared at or bullied. Can you imagine a world where no one is judged for what they look like on the outside? Where everyone is accepted for who they are on the inside? That would be a pretty amazing world, wouldn't it?

This summer I had the pleasure of working in a dining hall for the 2013 Canada Games. The place was filled with athletes. Among these athletes, I noticed one of them had Down syndrome. She was a very sweet girl who always came in with a smile on her face. What I also noticed was that no one stared at her or made rude comments. She just blended in with the crowd. Unfortunately, for me, this was not the case. Throughout each day, I would notice people staring at me as I worked. Even when I talked to some of them, I could tell by the way they were looking at me, that they were trying to make sense of my facial differences.

I began to wonder, why did they stare at me, but not at the other girl too? Suddenly, it dawned on me; familiarity. It is safe to say that a majority of the population is aware of Down syndrome. They teach us about it in elementary school and we also even see people with Down syndrome who are actors in TV shows and movies! This made me realize that the reason the athletes did not stare at that girl, is because they all knew about Down syndrome and so it was no big deal to them. When people are faced with someone that looks unfamiliar and different, it makes them curious and more likely to stare and sometimes even judge.

What I went through at work, got me even more excited for September to arrive. This month means a lot to me because it is our chance to educate others. The more we educate, the more we are able to wipe out ignorance. If we educate others about facial differences, then they’ll be more understanding and hopefully more accepting. Knowledge is power! Every time I meet someone new and tell them I was born with Pfeiffer syndrome, I always get the same response: “Pfeiffer syndrome? I've never heard of that! What is it?” My hope is that one day; people will automatically know and recognize what a craniofacial syndrome is. Therefore, if they see someone that looks different, they'll shrug it off like it's no big deal. How is this possible? By spreading awareness! For the past 2 years during Craniofacial Acceptance Month, I have put up CCA posters all around my university campus. This year was no exception. As I started putting up the posters, I got that feeling of excitement. When I walk to class and see all the yellow everywhere, it makes me proud to be a part of CCA and all that it stands for. I have always believed that we should never judge a book its cover. It's what's on the inside that matters!

Beyond the face is a heart :) 

--Sabrina

Showing off our Awareness Month Poster on Campus

"What's wrong with your eyes?"

Please welcome our first "Guest Blogger", Sabrina!

Hi, my name is Sabrina and I'm 22 years old. I was born with Pfeiffer Syndrome (Type 1) as well as a congenital heart defect. I have had 21 surgeries. I'm currently in University, majoring in Health Psychology with a minor in Political Science. I heard about CCA when I was 15, and attended my first retreat in Nashville, TN. It was an incredible experience!! I loved meeting others who have been through the same things as me. Overall I have gone to 5 retreats and enjoyed every second of it. I highly recommend that every family should make it to at least one retreat. It's an amazing event that you will never forget. It not only benefits the child, but the whole family as well!

We are so happy that she has offered to share her insight on the
CCA Kids Blog and we hope you enjoy this new perspective.

When I went out the other night, I got to meet some new people. After being introduced to one woman, she later asked my mom “is she blind?” My mom was shocked, came to my defence and said “there's nothing wrong with her eyes, she has 20/20 vision!”

Normally, a comment like that would have upset me. However, earlier that night, I was complimented many times on how beautiful I was and how nice my dress was. Those kind words meant a lot to me and really made me feel confident. So when I heard about the woman who asked if I was ‘blind’, it just amazed me how ignorant some people can be. I have gotten many negative comments about my eyes over the years. I had hoped they would stop as I got older, but unfortunately, there will always be people out there who just don’t understand.

Being born with a craniofacial disorder presents many challenges for a child, which will continue on throughout adulthood. Even though it was tough going through so many medical procedures, I always felt that ‘social situations’ were more difficult to deal with. I’m not what society considers “normal” and I felt that judgment at a very young age when I noticed kids and adults staring at me. To be surrounded in a world where outer beauty is portrayed as the most important thing, it’s difficult not to let it get to you.

How do you deal with that? How do you deal with trying to blend in with society, when they always make you feel like you stand out? The key is to find people who will love you and accept you just the way you are. I am so fortunate to have the loving support of my close friends and family. When I feel loved, it is easier not to get upset when I’m judged by strangers. Though, of course, everyone has their ‘bad days’. Sometimes, I do get very agitated. If I’ve already had a long day and I’m tired, the last thing I want to deal with is judgemental stares when I’m out in a public place.

Living in a world that is so fixated on self image and outer beauty, I grew up thinking that I would never truly be accepted for who I am. Naturally, every time I met someone new, I would automatically wonder “do they notice something different about me? Do they think I look weird?” Even nowadays, I try not to over think it, but old habits are hard to break. When I went to my job interview in January, I was actually afraid that they wouldn’t hire me because of the way I look. Of course it may seem crazy to think like that, but when you’ve grown up going through situations where people make fun of you, doubt you, and talk down to you; it messes with your self-esteem.

Dealing with stares and judgement is always hardest when you’re a kid. When I got teased, I felt ‘ugly’. I would dream of having a different face. I wanted to be like the ‘pretty’ girls. I thought that I had to be like everyone else in order to feel accepted. It has been a long and tiring journey, but I am finally at a place now where I am happy with the way that I look. I don’t focus so much on it anymore because it’s what’s on the INSIDE that counts.

Would social situations be easier if I didn’t have Pfeiffer Syndrome? Of course. But this is the card I was dealt and I can’t change that. When you can’t change something, you have to change your attitude about it. In junior high, I was surrounded by new students who constantly stared at me as I’d walk down the halls. Eventually, I got tired of being stared at, so I went to the principal to see if I could do something about it. She suggested that I go in front of every class and talk about Pfeiffer Syndrome. I was afraid of how they’d react, but it turned out to be a success! I could see that they weren’t being mean, they were actually just curious because I got asked many questions. The next day, instead of getting stared at, I got waved at! I made so many new friends and I finally felt comfortable at school.

As much as we’d like to prevent it, there will always be ignorance in the world. I will never be able to ‘blend in’ and not get stared at. (Although I will admit that I sometimes ‘hide’ behind my sunglasses so no one can see my eyes). Instead of getting angry at people who stare and make comments, I just feel sorry for them. When I look in the mirror, I just see “me” and I’m fine with it. I don’t think there’s anything ‘different’ about me, because we are ALL different. On those bad days, I ask my mom “what is so different about my eyes? What do they see??” It does frustrate me sometimes because I can't understand what people see in me since we're all different in our own way.

In my first semester at University, I was eating lunch with a guy that I had just met, who lived in the same residence as me. He said “um, do you mind if I ask you a question? Don’t take this the wrong way but... what’s wrong with your eyes?” My immediate reaction was “well, I was born this way!”, because really, what other explanation is there? I decided not to let that situation bring me down because a part of me knew that he didn’t mean to offend me. He just noticed something ‘different’ and was curious about it. This is where it’s good to spread awareness and to pass on knowledge about craniofacial syndromes.

As life goes on, there will always be times where we have to face a difficult social situation and we may feel uncomfortable at the moment, but we have to get past it and move on. Life is too short to focus on negativity. The important thing is to love and accept yourself, and with that frame of mind, no one can bring you down. I have been working on loving myself and embracing my unique side. I surround myself with people who believe in me and encourage me to follow my dreams. I know I can make a difference in this world. I'm going to graduate from University, and get a job where I can help others. I won't let anyone stop me from accomplishing my goals.

Always remember:
“Be who you are and say what you feel because those who mind don't matter and those who matter don't mind” – Dr. Seuss

Don't Judge a Book by Its Cover

The following post is reprinted with permission from Joe Brooks, a student at the University of Mary Washington.  He wrote this essay for his sociology class.  We thought is was fantastic and wanted to share it with our readers!

One thing I learned early in life and strongly believe in is that you should not look at a person and judge them based on what you see before you get a chance to know them. I embrace this belief because I was born with a rare syndrome called Oto-Palatal-Digital Syndrome (OPD) type II, and it gives me a unique appearance mostly in my face, hands, and feet, and it also affects my speech, vision, spine, and hearing. Everyone looks different, but just because some people look more different than others, people start to judge them. I believe this is not right and that all people should be accepted for who they are and not what they look like.

Growing up with OPD, I have had to deal with people staring at me and teasing me just because of the way I look. I had kids call me ugly, and one time when I was four I had a boy tell me he hated me for no reason. But my parents taught me that I can’t let that stop me from enjoying life. I have made some good friends who liked me as a person and didn’t care what I looked like. All my friends know I am nice and I have a great sense of humor. I love to play percussion and I am obsessed with aviation and Pokémon.

I would say this belief is not part of the US dominant culture because there are so many people who don’t know how to talk to someone with any kind of difference, be it race, manner of dress, or disabilities. On the whole it has taken many years to have society accept people with different colors of skin, and society is still having difficulty accepting people with disabilities. People with disabilities are not that much different than other people, they just have to live their life their way, finding ways to compensate. We still want to have fun and make friends, just like everyone else, and we still love to learn. Some people don’t seem to get that. This belief is more specific to my family and friends because they know me and know not to judge me by my looks. I also have a specific group of friends who share this same belief because they also go through what I go through.

This great organization supports families who have a family member with a craniofacial difference, like I have. The group is called Children’s Craniofacial Association (CCA) and they provide emotional and financial support for children and adults and their families affected by craniofacial differences. I really enjoy being friends with people from CCA because they know what I’ve been through, physically and emotionally, because they have been through it too.

CCA’s motto is “Beyond the Face is a Heart” which basically means that it doesn’t matter what someone looks like; they still have feelings just like everyone else. But because of the way our faces are, people tend to look at us and treat us differently. We often get stared at. One great thing that CCA does is hold a retreat every year for us to meet and have fun with others just like us, and know that we are not alone. When you are at the retreat you don’t have to worry about being stared at because everyone knows that staring is rude and they know why you look the way you do.

In conclusion, I strongly believe that you should not be judged based on looks. Everyone has feelings and everyone has things they like and dislike. But one thing that everyone wants is to be accepted, and that tends to be difficult for people who have any kind of difference. But it doesn’t have to be. It’s nice to know that there are good people in the world that do see beyond the differences, and if we had more people like them, the world would be a better place. Don’t judge a book by its cover; you might miss out on an amazing story.

Joe

Every Kid Needs a Hero!

Today is my son Peter’s 12^th birthday, and I’m so very proud of the young man he is!  The best birthday present he's received is the national recognition and acceptance that R.J. Palacio’s debut novel, Wonder, is giving to kids like him.  Every kid needs a hero to inspire them, and I want to thank Ms. Palacio for creating one for my son.  If you have read Wonder, I think you will agree that the main character, Auggie, is a hero that everyone can fall in love with.  For a 12-year old boy with a craniofacial syndrome, however, there are simply no words for what it feels like to have kids around the country reading this book and cheering for Auggie.  This book has given my son and the craniofacial community something we have always desired:  for people to look beyond our children’s faces and get to know them for who they really are.

Peter loves this book and wants all his friends to read it so they will, “understand me better.”  For the #WONDERschools Blog Tour, we thought it would be fun to give classrooms around the country a real-life comparison to Auggie.  Look at the picture of Peter and see if you can identify at least five things that remind you of “Auggie”.

Peter and Auggie photo comparison

1. They are both boys about the same age.
2. They both attend a private school.
3. They both have a dog.
4. They both have a hearing aid device.
5. They both love Star Wars.
6. They both have ear-related birth defects.  Peter wears a prosthetic ear, which he placed on the book cover in this photo.

They have many other similarities that aren’t depicted in the photo.  Here are just a few you might want to discuss.

1. They both had trachs to help them breathe.
2. They both have one sibling.
3. They have very close birthdays.  Peter’s is October 7^th.  Do you know when Auggie’s is?
4. They have both been Boba Fett for Halloween.
5. They both love video games!
6. They both have difficulty chewing and swallowing (Peter still has a feeding tube).
7. They have both had over 20 surgeries.  Peter has had 25.  Do you know how many Auggie had?
8. They both feel most comfortable at home with their family.
9. They both use humor to handle their differences.  We have a lot of ear jokes in our family!

Peter and Auggie also have differences that you can’t see in the photo:

1. Peter has a younger brother while Auggie has an older sister.
2. Peter’s parents knew a little bit about his birth defects before he was born.  Do you remember Auggie’s birth story?
3. Peter never hid behind a space helmet, but he can understand why Auggie did.  Peter likes to hold the cover of Wonder in front of his face.
4. Peter has never had a standing ovation—yet!

At the beginning of the book Auggie says, “If I found a magic lamp and I could have one wish, I would wish that I had a normal face that no one ever noticed at all.”  Peter wishes for the exact same thing every time he is asked that question.  While I would like that mainstream acceptance for Peter, I also believe he has a unique opportunity to leave others with a positive life-altering impression.  Our kids have the gift of inspiring those around them.  As Auggie says in the book trailer, “It’s hard to blend in, when you were born to stand out.”

Always remember to “Choose Kind”.  If you want to send Peter a birthday wish, please donate to Children’s Craniofacial Association by visiting his fundraising page at www.firstgiving.com/fundraiser/petesoktoberfest2.

Follow these links to read our other blogs about Wonder:  The Power of First Impressions and A Mother's Love has no Limits.  To read more blogs about Peter, read What's in a Name?, Why Me?, Snakes, Crabs & Geese... Oh My!, My Lesson from a Ten-Year Old, The Things we Take for Granted, and The Importance of Unconditional Love

Dede's family lives in metro Detroit where they enjoy cheering on the Detroit Tigers and Detroit Red Wings.  She has two rowdy boys ages 12 and 7, two crazy dogs, and one dedicated husband.  Peter was born premature with Goldenhar Syndrome.  He spent his first 3 1/2 months in NICU and came home from the hospital with a trach, feeding tube, oxygen, and lots of machines!  Jacob is four years younger and is unaffected.  He enjoys playing hockey and winning at anything he deems a competition, which is basically everything.  Peter is an avid reader, a walking encyclopedia of Star Wars, and a fan of playing jokes with his prosthetic ear.  Dede is a family-faculty speaker at children's hospitals and serves on the Board of Directors for Children's Craniofacial Association.  Follow her on Twitter @ddankelson.

The Power of First Impressions

Several years ago R.J. Palacio had a life-altering experience when she had a very brief encounter with a craniofacial child at an ice cream parlor.  The negative reaction of her young sons to seeing someone different left a permanent impression.  Ms. Palacio spent years, both consciously and subconsciously, thinking about this incident and putting herself in the shoes of the child with a facial difference.  I believe this is why her debut novel, Wonder, gives such an insightful perspective of what it really feels like to not only be a 10-year old boy with an extreme facial difference but to also be the parent, the sibling, or the friend of someone who looks different.

One of the things I like the most about Wonder is how it encompasses the entire family dynamic.  As parents of children with a craniofacial condition, we already know how it impacts both us and our other children.  Having lived over a decade as Peter’s mom, I can reflect on how I used to obsess over stares at the grocery store and incidents at the playground.  I was always consciously aware of his differences.  Thankfully, I had time to adjust to my role as his parent before having to coach him through social situations.  As he’s gotten older, Peter has taught me as much or more as I have taught him on how to interpret and navigate social incidents.  The important thing is that we have learned together, as a family, and that is a main theme that endears me to Wonder.  Like Auggies’s family, we have found that openness and a sense of humor are usually the best ways to encourage acceptance.

For our family, the timeliness and issues discussed in Wonder, couldn’t be better.  Peter, like the main character “Auggie”, is entering middle school and has a fascination for Star Wars, video games, and science.  They also both appreciate the unconditional love of a pet, the anonymity of wearing a mask on Halloween, and the benefits of using humor to put others at ease about their differences.  Although I don’t feel that Peter’s craniofacial condition is as extreme as Auggie’s, they do both have small/missing ears, trouble eating/swallowing, and the need to wear a very noticeable hearing aid at school.  I know that Peter, who has read the book, can relate to all of these things.  He can also relate to some of the teasing, questions, and staring that Auggie encounters.  In giving Peter the book, I was worried about how emotionally hard some of those parts might be for him to read.  Having read it first though, I was able to easily discuss the story with him.  In fact, it provided a lighter way to discuss some very heavy topics.  Peter loved the book and wants all of his friends to read it so, “they will understand me better.”

Unlike the fictional Auggie who has an older sister, Peter has a younger brother.  Because our youngest is only seven, we don’t have as much experience with sibling social issues.  In my experience with attending the CCA family retreats, however, I am always impressed with the older siblings.  They are some of the most mature and compassionate young adults I have ever met.  I’m so thankful that Jacob will also grow up attending the CCA Family retreats; that he will have established friendships with others who know what it’s really like to have a brother or sister who’s different.  Auggie’s older sister, Olivia, brings up important sibling issues of not feeling as important and not wanting to be defined as “the sister”.  We learn how Auggie’s condition impacted her friendships growing up and how they still affect her as she starts a new high school where no one knows about Auggie.  Ms. Palacio does an amazing job of developing Olivia’s sibling perspective as well as those of Auggie’s friends and parents.

The fact that Wonder is bringing national recognition to craniofacial differences in an extremely positive way, gives me hope that our society will someday embrace what we as craniofacial families already know:  “Beyond the Face is a Heart”.  As part of CCA’s campaign to promote September as craniofacial acceptance month, I am thrilled to announce that we have partnered with Random House to sell Wonder and to support their “Choose Kind” anti-bullying campaign.

If age appropriate, Wonder and the “Choose Kind” website are excellent tools to encourage discussion at schools and other community forums.  I intend to use both for an acceptance program I am helping to develop at Peter’s middle school.  With the escalation of violence and bullying in our schools, there has never been a more accessible and relevant time to approach school administrations about implementing an acceptance program.  Our kids make lasting impressions on everyone they meet no matter how brief the encounter.  As craniofacial families, I think it is our collective responsibility to ensure that those impressions are overwhelmingly positive.  If we are lucky, they may even be as life-altering and widespread as Ms. Palacio’s experience was in that ice cream parlor.

Here are some ways you can use Wonder to promote September as "Craniofacial Acceptance Month"...

• Contact Annie Reeves at CCA’s office to order your copy of Wonder and to request other materials that can help you promote September as craniofacial acceptance month.  CCA is offering the book for $12/book (shipping included).  CCA's office number is (214) 570-9099 or 1-800-535-3643.
• Visit www.choosekind.tumblr.com  to make your “Choose Kind” pledge and to access anti-bullying resources and download the educator guide.
• Visit Ms. Palacio’s website at www.rjpalacio.com for book club questions.
• Promote the book on Twitter by using #thewonderofwonder.
• Find Wonder on Facebook by searching “wonderthebook” or linking to (https://www.facebook.com/wonderthebook)
• View and share the book trailer video for Wonder.  It’s accessible on all the websites and social media outlined above.

It Takes a Village

We often hear the term "It takes a village to raise a child".  These words have never rung more true than they have in the last 7.5 months.  In the early days after Mary Cate was born I remember the doctors asking me over and over how we were doing and how we would get through this??  I remember my first response was always ...

"We have the most amazing support network known to man, and THAT is how we will get through this".  We are blessed with an abundance of friends and family, but we are also very blessed to live in one of the most supportive communities on the planet!  People often ask how our family has taken so much in and taken it in stride, and, honestly, it has been with the support of all of YOU!

From day one I knew my next mission in life would be to raise and spread awareness of Apert Syndrome.  I knew my daughter had started her life with many obstacles to overcome, so why not make it easier for her?  Why not show her off?  Why not parade her around?  Why not make her life normal?  Why not educate myself, my family, friends, community and the world?  Why not let everyone fall in love with My Mary Cate and know who she is, so that as she lives her life everyone will already know that she is Mary Cate.  She has Apert Syndrome, she does look different, but she is still a beautiful, happy and sweet little girl!  The less questions for her as she grows up the easier it will be to live her life normally.

This is my passion, my job, and my number one love.  I want to share the wealth!  I wholeheartedly believe that people are inherently good, and that ignorance comes from lack of knowledge.  From logos, to campaigns, to ice cream socials, to bake sales, to bar crawls, to snow cone stands, to "Team MC bows"-- Love is all around us, and we hope all of you are fortunate enough to feel the same!

article from a campaign called "Changing the Face of Beauty".  This was featured in Chicago Special Parent magazine's Summer 2011 edition and was recently featured on Maria Shriver's blog.

We are rare.  CCA families are few and far between, but with supporting each other and helping spread the word we will take on the world and show the world the loves of our lives!

xo

Kerry