Video: "Smile with Simon" by Patricia Simon

Patricia Ann Simon, R.N. wrote this song about a girl and a bird with cleft lip and palate. It's all about celebrating our differences, "smiling with Simon" to be kind and courageous. This courage makes us beautiful. The animation and slideshow of pictures is nothing short of inspiring. I hope you enjoy the video, buy the book, and check out Patricia's website filled with resources, animals, and lots of smiles.

Thanks Patricia! You rock!

CCA Family Spotlight: Tiffany Kerchner

I'm Tiffany Kerchner, I'm 27, and I was born with Moebius Syndrome. I was introduced to CCA through Dr. Bartlett and his staff at Children's Hospital of Philadelphia. CCA has changed my life immensely. Growing up with craniofacial disorder in a society that is obsessed with looks is not easy. When I was in grade school, I was teased and called Two-Face. I started going to the CCA retreats when I was 9 and it was so awesome seeing other children like that me. Children I could relate to... children that knew what I was going through and how I felt. I owe so much to CCA.Now I'm 27 and all done with surgeries. I embrace my differences and see my true beauty despite my disorder. I work in a nursing home as an aide and I am currently enrolled as a nursing student at Penn State!


There's so much I'm proud of when it comes to CCA and my own personal journey. The fact that I can finally look in the mirror and like what I see is amazing. I know I look different, but for the first time in my life, I'm okay with that. I owe a lot to the support I've received to my family and friends. My mother has been tremendous in shaping me as a person. She also went through a lot.

Artist Interview: CCA Sticker by Bindy James

We have three new webstore items for CCA! They are all commissioned stickers by artists who graciously gave their time and talent to make custom artwork for an artist-series collection. One of the new stickers you can order is this cute cactus.

The "Different is Cool" cactus is first sticker and artist we're featuring, by Bindy James, of Brisbane, Australia. She graciously designed this adorable cactus sticker for CCA. Check out our exclusive interview below to learn more about her work and why she chose to create such a cool piece for CCA Kids.

Interview with Bindy James, Artist 

CCA: Where are you from?

BJ: Brisbane, Australia.

CCA: When did you first start drawing and illustrating?

BJ: I've being playing with paint, collage, textiles and printmaking for as long as I remember but I have only being creating digital illustrations for about 4 years. 

CCA: When did your art turn into more than just a hobby?

BJ: I completed my graphic design diploma at the end of 2014. It was around this time I started to freelance and show my work on Instagram. 

CCA: What’s your process like? How long does it take to go from idea to finished illustration?

BJ: All my illustrations begin as sketches on paper and are then pieced together digitally. Even though I'm a digital artist, the way I approach my art is more like a collage artist. I work with an array scanned handmade textures, photos and subtle patterns. The time it takes to complete an illustration can vary depending on how complex the work is and how much research is required. 

CCA: Who are some of your favorite illustrators and artists?

BJ: The earliest inspiration I can remember came from the artist Jeannie Baker, illustrator and author. As a child I loved her book “Where the Forest Meets the Sea.” Her amazingly detailed collages of the natural environment has influenced my work. At the moment, I'm loving the beautifully detailed plant and animal drawings of UK illustrator Katie Scott.

CCA: What’s your favorite illustration you’ve done?

BJ: My favorite illustration so far is 'Eucalypt Preserves,' inspired by the forests of my local area.

CCA: What inspires you?

BJ: My inspiration comes from nature's oddities. Often the small, overlooked natural objects that I can pick up and hold. I love fungi and succulent plants, shells, coral, star fish (anything rock pool related) leaves, gum nuts, seedpods, flowers and feathers. When I lack inspiration I go to Museum in Brisbane and visit the biodiversity specimen collection. So many creatures and nature's treasures to look at.

CCA: Aside from illustration, do you dabble in other kinds of art?

BJ: I do like to mix it up once in a while and create traditional collages and draw with colour pencils.

CCA: What does a day in your life look like?

BJ: By day I work as a Graphic Artist for an online training provider. By night (and most of the weekend) I work on my illustrations at home in my cosy work space.

CCA: What does kindness mean to you?

BJ: Reaching out to others and sharing the love!

CCA: What’s your motto?

BJ: As an artist my motto would be “embrace and nurture what makes you different from the crowd.”

CCA: Why did you agree to help out CCA? (We’re so grateful!)

BJ: CCA does amazing work. Until recently I hadn't realized the diverse involvement that CCA has in this cause. The stories that come out of your programs are inspiring. I'm thrilled to be able to contribute!

CCA: Five things on your list of things to do before you die:

BJ: 

- Become a wildlife foster carer

- Create an amazing seasonal vegetable garden

- Go on an artist's retreat 

- Cuddle a baby sloth

- Visit Tasmania

Thanks, Bindy! You can see more of her art here.

You can order your own sticker on our webstore but hurry, because these limited edition cuties won't last forever!  

Talking to a Person with Differences Can Make You Kinder

Today on the blog we have a video of a research study conducted as a part of the BBC Documentary by Adam Pearson, "The Ugly Face of Disability Hate Crime." This excellent documentary follows Adam as he seeks to uncover some justice regarding disability hate crime (including cyberbullying) and also as he tests out his theory that engaging with people with facial differences can in fact change how individuals will act towards people with differences in the future.



This documentary is certainly timely, because as students head back to school, it's important to help them reach out to their classmates and educators about their conditions. By proactively scheduling introductions and presentations, students develop the skills of assertiveness, positive non-verbal communication, and self-confidence. Learning to talk about one's self can be difficult for anyone, and can be even more so with a facial difference. However, using tools and resources like our Wonder classroom kits, students can proactively set the tone for a school year built on kindness, empathy, and respect.

Please contact us if you'd like help setting up a presentation at your school.

Erica Perry Takes Control: Short, Awesome Documentary

The CCA Bloggers think you will love this short, inspiring documentary about Erica Perry, a New Zealand woman born with an extremely rare condition called Miller’s Syndrome, which affects her physical appearance from top to toe. Having undergone 40 corrective surgeries, Erica's wondering: what’s the alternative? She takes us on a journey, discovering different ways to gain self-confidence and be happy in the skin she’s in.

The full 27-minute documentary is available on AttitudeLive: http://attitudelive.com/documentary/erica-takes-control

Here's a clip.

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!

5 Things Not to Say about Someone's Weight

CCA wants to make the world a kinder place.

One way we accomplish that mission is to prevent and end bullying, teasing, and hurtful remarks, in social spaces and online. Unfortunately, many of our CCA Alums & Adults are familiar with bullying tactics and have been targeted by classmates, peers, and even adults. To help fight back against bullying, CCA is running a series of personal posts about how our Alums & Adults have handled bullying and teasing situations. Plus, we'll be posting resources from experts about how to promote safe and supportive relationships. Stay tuned this week for informative, inspiring posts about changing the way we react to others' comments - bullying, teasing, and even "harmless" remarks.

Some folks just have to comment on your looks every time they see you.
Maybe it's your face. Or your outfit. Or your smile. Or even your shoes.
Regardless of what has piqued their interest, you know they are looking because they're commenting. And while it is nice to receive a compliment, sometimes even well-meaning remarks bring up anxiety to those of us who already feel like a person on display.

Blogger Meg has experienced her share of frustrating comments, too, specifically about her weight. It can be exhausting to constantly answer others' questions, so keep Meg's tips in mind next time you - or your grandma - want to make a comment about another person's appearance. Whether you're curvy or angular, chubby or skinny, dark or light, tall or short... we're all people inhabiting the body we were born with. And we all want to be accepted for who we are, not what we look like.

5 Things NOT to Say to Someone Who's Thin
by Meg Storie

1. "You probably can eat anything you want and not gain a pound!"

No, I can't actually! I have Gastro-Esophageal Reflux Disease (GERD). Any food high in fat or with milk upsets my stomach and sometimes triggers heartburn. I don't have fast food very often; it's a treat when I do. I love my frozen yogurt sometimes. And because of GERD, I must eat early, hours before bedtime.

2. "You look like you are ten!"

Let's be honest: I do not look like I'm ten. This statement is too quick of a reaction and you should have thought before you spoke. In my early twenties, this is the "compliment" I get mostly, but even though we universally accept that everyone wants to look younger, no one wants to be infantilized. I'm a woman, not a child.

3. "How much do you weigh? You must be only X pounds!"

This is not the Fair and I didn't just give you three chances to win a prize. You wouldn’t ask an overweight person how much they weigh, so you certainly don’t ask someone who’s underweight.

4. "Do you eat?

What a silly question! I wouldn't be here if I didn't! The truth is, I love to eat. I thoroughly enjoy discovering new recipes on apps, dark chocolate, and eating David's heart healthy dinners! Eating is something I enjoy, but I have to mind my restrictions for my health.

5. “You need to put some weight on you.”

This statement assumes so much about me that is really unfair. I have been small all my life, so barring any physical changes to my body's chemistry, I'll be staying this way. For many underweight people, it is just as hard to gain weight as it is for an overweight person to lose weight.

---
In the end, making the world a kinder place is about shifting our communication patterns from commenting on people's looks to connecting with their spirit. There are many ways to start a conversation or compliment someone.

If you're guilty of saying some of these things out of habit, why not brainstorm a list of creative things to say instead? We came up with 5 Alternatives to get you started...

1. Hi, Ginny! It is so great to see you! 
2. I have missed you, Maggie! Where should we get lunch?
3. Corbin, thanks for making it to the meeting! We're glad you're on our team.
4. You're such an inspiration, Jake! When did you starting running 5Ks?
5. Kelly, I have been eating way too much red meat lately. Do you know any good fish recipes you'd like to share?

Can you think of more? Share them in the comments!

#giveRARE day is coming!

On March 3, we will join with the 30 million Americans affected by rare diseases. The day, #giveRARE Day is an online fundraising event, with corporate sponsors and prizes for the most successful nonprofits.

In preparation, we're spreading the word about rare diseases and our fundraising campaign. You can save these images below and share them on Twitter, Facebook, & Instagram.

Check out our #giveRARE campaign page here, which will be updated frequently this month and until March 3! Let us know if you want to sign up to host your own fundraiser as a RARE Champion!

Book Review: Stephen

Today we have a book recommendation from blogger Stephen! Check it out and put it on your summer reading list! 

 

A book I would highly recommend is Creativity: The Psychology of Discovery and Invention, by Mihaly Csikszentmihalyi.

What especially attracted my attention is the section on what the concept of "difference" is.

The author explains that if you substitute the word "not" for difference, then it helps define what difference is and how it applies to our lives.

Here's an example:  

Four (4) people share the same LIKE for Pizza and one does NOT.  The one who does NOT would be called "different" by the other 4.  The 4 might inquire as to why this person does NOT like Pizza.  BUT, by the answers given and the conversation between individuals, even the people who like Pizza might find out more about themselves which would deepen their own experience in enjoying Pizza (and understanding those who don't).

So if you list the NOTs, then it describes the difference:

Not the same age.
Not from the same school.
Not working.
Not exercising.
Not riding the bus.

By overtly clarifying what is different, the focus can shift on to what is the same about the people in the group. 

For more informative thought exercises, check out the book: Creativity: The Psychology of Discovery and Invention by Mihaly Csikszentmihalyi 

http://www.amazon.com/Creativity-Psychology-Discovery-Mihaly-Csikszentmihalyi/dp/0062283251/ref=la_B000AQ1KVM_1_3?s=books&ie=UTF8&qid=1397663151&sr=1-3

--Stephen

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: Difference and Fashion

Pro Infirmis: Because who is perfect? Get closer.

It's no secret that I love fashion blogs, so when I came across this Pro Infirimis project, I couldn't get it off of my mind and I had to share it with you! I am thrilled at the prospect of seeing non-traditional models in fashion because as I've said elsewhere on the blog, "I like different." Different is beautiful and this project celebrates differences. Projects like this one remind me that we are changing the world and how the world sees disability and difference.

Check it out:


From the Huffington Post article:

Pro Infirmis, an organization for the disabled, created a series of mannequins based on real people with physical disabilities, working with individuals like Jasmine Rechsteiner, a Miss Handicap winner who has spine malformations, and Erwin Aljukić, an actor with brittle bone disease. The project's title? "Because Who Is Perfect? Get Closer."

The beautiful process was documented in a video (watch it above), capturing the joy of the models seeing their own unique figures recreated for the first time. But the best part of it all is that the mannequins were actually placed in store windows today, filling the shopfronts on Zurich's main downtown street, Bahnhofstrasse, in honor of International Day of Persons with Disabilities today.

"Seeing it there for real is quite a shock," said one of the video participants. And that's exactly the point. Raising awareness of those with disabilities, specifically in the realm of fashion, is a conversation that's already begun with groups such as Models of Diversity, which aims to bring models of all shapes, sizes and colors to the fashion runways and media.

Outspoken individuals like Kelly Knox, the winner of BBC's "Britain's Missing Top Model," and Angela Rockwood, who returned to her modeling career with a Nordstrom campaign after becoming a C4-5 quadriplegic, have also made their voices known.

Some stores have made concerted efforts to include body diversity, including those with disabilities, in their ads. Nordstrom has been doing so since 1991, while British department store Debenhams made headlines earlier this year with a Spring 2013 look book that featured a woman who was an amputee.

It's still an uphill battle to make the mannequins in our store windows reflect the shoppers passing by. But "Because Who Is Perfect? Get Closer" and the Swiss stores who participated prove that it can definitely be done.

---
--Erica

Educational Advocacy Series: Part Two

CCAKidsBlog.org is pleased to announce that Paula Guzzo, CCA Board Member and Past Chair, is writing a series in October dealing with Educational Advocacy. This post is Part Two in our October Series. You can read Part One here.

Scott’s Journey, Part Two: "Get it in Writing!"

In response to comments to last week’s entry about Scott’s first five school years: Scott’s placement in a segregated setting is what was considered “best practice” at that time. It’s refreshing to hear that people are surprised. We hope that the educational best practice of inclusion is now taken for granted.

Moving to the second part of Scott’s Journey. . .Scott was bussed across Evansville for five years to the class for children with multiple disabilities in a public school. His teacher understood that we wanted Scott educated with children in a general education (inclusive) setting. She found a first grade teacher who let Scott and an assistant come to her class for reading class. Other teachers let them attend reading, art, and music classes during subsequent years in that school--the result of “agreements.” Scott learned and made educational progress in that setting.

Scott's 1st day at Highland Elementary, our neighborhood
school. August 29, 1994.

During those early school years, Bob and I interviewed adults with disabilities throughout the country about their education, and we asked how they believed Scott should be educated. Everyone recommended an inclusive setting. These interviews contributed to our mission for Scott’s case conference committee that year and from that time forward: general education class in his neighborhood school with appropriate aids and supports.          

When it was time for Scott’s brother, Aaron, to enter kindergarten, we wanted both boys educated in the same school—our neighborhood school. Another parent (of twin girls with CP) and I met with our neighborhood school principal sharing our mission and further stating that we believed special education services could be provided in any school. He agreed and said he would welcome Scott and the twins.

Bob and I discovered that students with multiple disabilities were being successfully educated in inclusive settings in other school districts. We talked with their parents to see what attributed to those successes. We spent hours documenting Scott’s strengths and needs in all areas of his life. We wrote a ‘parent report’ to be presented at the conference. (A future blog entry will be solely dedicated to the parent report.) We wrote out the general education teacher’s role, the teacher of record’s (TOR) role, the resource room teacher’s role, and the necessary requirements of an aide to provide educational support and personal care to Scott.

Once word got out about our mission for Scott, a few other parents of children with disabilities called saying that’s what they wanted, too. So, at spring conferences in 1994, families worked with our school corporation to move five children with disabilities from segregated classrooms into inclusive classrooms. Scott was the only one classified as “multiply disabled.” Even though Scott was 10, we decided that he should be in a third grade class since he was ready for the third grade reading curriculum. More importantly, we’d been advised that 8-year-olds would be more accepting (compared to 10 year-old fifth graders) to a student with multiple disabilities.

Eleven hours of conferences with 19 people sharing and receiving information about Scott achieved the mission that he would transfer to his neighborhood school, be educated in a general education classroom, receive pull-out resource supports, and have the services of a dedicated classroom aide. We celebrated. . .until the written IEP was received. It did not include these three main points!

Scott and his classroom assistant, Karen Maxey.

(We’d previously learned the hard way that Scott’s rights weren't protected if “agreements” weren't written in the IEP. Years earlier we had an unwritten agreement that Scott would have increased speech services. He received those services; but, during that year the TOR took maternity leave, the speech therapist took medical leave, and the principal resigned. Bob and I were the only ones left who’d been in on the original agreement. The new TOR, speech therapist, and principal were obligated to provide the lesser services that were written. We had to conference again to get the increased services written in the IEP. . .a delay which could have been prevented if only it had been written when agreed upon!)

So, we wrote a letter to the Case Conference Coordinator explaining that we would sign the IEP only after the above three points of our mission were included. She apologized and explained that this was new to the school corporation. She corrected the IEP. We signed the IEP, and we never looked back.

Worth noting: I advise parents to NEVER EVER sign a blank IEP. One wouldn't sign a blank check, and one surely should NOT sign a blank IEP! Always read through the completed document and ensure that everything that was agreed to in the meeting is included in the IEP. If the IEP needs correcting before being signed, document the issues in an email or letter to the school and wait for the document to be corrected before signing it.

Our neighborhood elementary school principal hired an assistant. She worked with Scott from third grade until he exited the Evansville Vanderburgh School Corporation 10 years later. She was with him in all classes, at elementary band concerts, at middle/high school choir concerts, and at high school play rehearsals and performances. She went on field trips and work experiences. She was crucial to Scott’s success as were the attitudes of the many administrators, teachers, staff, and therapists who were a part of Scott’s journey.

High School Graduation! May 2004.

Scott remained in a general education setting until he graduated in 2004.

We now know there are benefits to inclusion that we did not anticipate. Some of Scott’s classmates have shared that Scott impacted their lives: some chose medically related careers because of him; some are teachers who are not afraid to have a differently-abled child in their class; some are parents of children with special needs who have said that they were better prepared for their own journey because of Scott; some are in jobs where they have opportunities to hire workers and are willing to select people with disabilities because of their classroom memories Scott.

Please do not read this and feel sorry for Scott or us. Instead, celebrate the victories and know that one person / one family can and does make a difference.

--Paula

Maria’s Top 5 Coolest Things about Being Different

Maria’s Top 5 Coolest Things about Being Different

As we enter Craniofacial Awareness Month, I have been reflecting on some of the things that make being different really cool. I couldn’t narrow it down to just one thing, so I have created a list of the top 5 things that I think are really cool about being different.

#5: We can face challenges with confidence.

Being different has taught me to adapt to my differences and overcome challenges with confidence. Everyone faces challenges in life, but being different has caused me to face challenges on a more regular basis. For some people who haven’t been challenged often it can be difficult to navigate those challenges. For those of us who are different and have faced many challenges on a day to day basis, we have the confidence to face any challenge placed before us.

#4: We have the chance to educate those around us.

Being different is scary and confusing to some people at face value. They are afraid to ask questions or even get to know someone who is different. We have the amazing opportunity to educate those around us that difference does not equal bad or scary. I remember one day working at a clinic and walking past this boy who commented “Eww look at her hands”. At this point I had two choices, be offended and upset, or stop and talk to the boy about why my hands were different and show him that it was really no big deal. It was neat to watch his attitude change when he realized that I was really the same as him.

#3: We can relate to each other regardless of language barriers.

In 2008 I had the amazing privilege of traveling to Morocco with Operation Smile as the surgical photographer. I had always wanted to travel with Operation Smile because of the work they do repairing cleft lips and palates, both of which I have had done. While on the trip I was able to relate to the families that were there for surgery because they could tell that I had also had the surgeries. Despite the language barrier, we were able to form a bond and understand each other in a way that other mission team members were unable to.

#2: It allows us to be thankful for the little things in life.

I believe that you can be thankful for the little things in life without being different, but I also think that going through all sorts of challenges in life helps you to appreciate the little things.  When you go through life facing potentially life altering surgeries and challenges, you realize quickly what is most important in life. While we still enjoy all the gadgets and material things, we understand that those things really don’t mean anything in the end, but that the relationships we have with our God, family, and friends are the most important things in life.

#1: We have the ability to inspire and give hope.

The absolute coolest thing about being different is our ability to inspire and give hope to those around us. We can give hope to other families that are just beginning their journey with a child facing difficult life challenges, and we can inspire those around us by overcoming all the obstacles our difference puts in front of us. We can inspire others by showing them that no matter what life puts in front of us, we will walk through it with confidence. Our ability to overcome tough circumstances shows others that they too can overcome trials in their life.

--Maria Summers, Guest Blogger

Summer Reading List: Dede

I've recently read two books that were written by women living with a facial difference.  As the parent of a craniofacial child, I enjoyed the first-hand perspectives these authors so bravely shared.  Both authors have lived with their facial difference since birth, and these were first books for both women.

World Enough and Time by Emma C. Williams

Emma C. Williams wrote her debut novel in a fictional format for young adults.  The story is about a teen girl coming of age and living with a chronic and physically noticeable difference.  Williams says that she chose to write for young people because they are "at the time of their life when books had the most profound effect on her own."  She has Goldenhar Syndrome and grew up experiencing what our own CCA Kids deal with throughout their lives:  clinic appointments, surgeries, stares, missing school, and insecurity over their appearance.

I loved the insights this book provided from Anna, the main character's, perspective.  For example, what it's really like to be poked and prodded by a bunch of medical students when you are a teenage girl half unclothed in an exam room.  Or, when dating, how you wrestle with judging someone else by their physical attraction when you live with a noticeable difference yourself.  Is that too hypocritical?  Anna's best friend is compassionate but also remarkably honest when necessary, which provides for some intriguing conversations about acceptance from the viewpoints of teenage girls.

This is a wonderful story that, to my knowledge, has never been available for CCA teen girls.  Overall, the book is an easy read that is reminiscent of a Judy Blume book with a touch of Wonder by R.J. Palacio.  I recommend that a parent read the book first to make sure it is age appropriate (ages 13+ would be my recommendation).  I think the story offers great opportunities for CCA mother/daughter conversations about difficult topics like dating, self esteem, growing up, surgery/medical decisions, and the fears of being alone.  If you are a CCA parent with a daughter in the 13+ age range, I highly recommend checking it out.

For more information about Emma C. Williams, you can visit her website where she also blogs as Anna Jones who is the fictional character from the book.

Facing Up to It by Dawn Shaw
"One woman's transformational journey from craving acceptance to accepting herself"

Dawn Shaw was born with a fast-growing tumor on her face that had to be removed shortly after birth.  Removing the tumor leaves one side of her face paralyzed and disfigured despite numerous attempts at reconstruction.  Facing Up to It is her autobiography from birth to adult-- including some topics that parents should preview before giving it to their teenager or young adult.  The book would benefit from some editing as some parts toward the end go on a bit too long.  Nevertheless, I enjoyed Dawn's story and admire her courage to so openly share all the "skeletons in her closet".  Any parent of a child living with a facial difference, especially a teen or young adult, will find words of wisdom and helpful insights that can only come from such first-hand experience.

For more information about the book and Dawn Shaw, you can visit her website at Facing Up to It.

Summary
One theme I appreciated from both of these authors is the positive and empowering impact their parents made in helping them to become successful adults.  Although the Emma C Williams book is fiction, I'm taking a leap that the parenting aspects of the story (as well as other parts) are somewhat autobiographical.  

It is refreshing to see people with facial differences making such powerful contributions to the world of literature, which I believe helps to bring about increased awareness and acceptance-- something we can all benefit from!

Friday Remix: Distinctive Style Magazine

I saw this wonderful article on Facebook (thanks, Meg!) and thought it was a great story to share with our readers. Former fashion photographer Rick Guidotti upended his career to start a nonprofit called Positive Exposure. The story is featured in A Distinctive Style magazine. Check out the excerpt below and click through to read the full story online!

Mom, I got this!

Last spring I was in a grocery store with my boys when a woman was very rude to us in the checkout line.  She was extremely annoyed because she believed we should be in a different line.  I finally looked her in the eye and asked, "Do you really need to act like this?"  Her arrogant reply was as expected, "I'm very busy.  You should be in the express line!"  I told the boys to go ahead as they had been waiting in line, and we were next.  The lady huffed and continued her attempt to make us feel uncomfortable.  I ignored her as we calmly took our time scanning and purchasing the three items we bought.  As we were leaving I said to Peter (loud enough that she could hear), "It's too bad that some people think they are more important and busier than everyone else."  Later in the car, I told Peter that she was an adult bully and that people like that don't expect anyone to stand up to them.  They think they can bulldoze their way through life by making others feel inadequate.  I explained to Peter that I was glad we didn't back down and let the woman go ahead of us, but I was also disappointed that I allowed such a rude person to upset me.  It didn't occur to me at the time how much Peter learned from my behavior that day.

Peter is attending a summer camp this month where no one is familiar with his differences.  He goes incognito with his prosthetic ear and wears a band-aid over his open stoma (trach hole).  The band-aid is obvious, but I was surprised when he said that one of the boys noticed "something different" about his ear prosthesis.  "Well, he must have noticed that it looks different and is curious," I said.  Peter just shrugged and remained silent on the issue.

Unfortunately I was wrong, something I suspect Peter already knew.  This boy repeatedly makes other students cry, destroys things, teases, and threatens.  Peter became his target last week when the boy told him to get off a piece of playground equipment.  When Peter refused, the kid became angry and shouted, "Your ear is weird, your neck creeps me out, and you talk funny!"  Peter, initially thinking he was joking, quickly realized the boy was serious and threatening.  So, he got off the playground equipment and walked away.

When Peter later told me the story, I was disappointed that he was so passive.  Fortunately, he didn't let me down because he went on to say, "But then I remembered what happened at the grocery store.  So, I walked up to the boy and said, 'You're a jerk'."  "YES!" I shouted with a fist pump.  I was so proud of him!  "You did exactly the right thing," I said.  "What did the boy do after you called him a jerk?"  "Nothing," said Peter.  "But some of the girls saw it happen and tried to make me feel better.  They like me (wink, wink)."

Peter tells me he has courage and is not a wimp.  He continues to stand up to this boy and is even protecting one of the other kids from his bullying.  I've asked repeatedly if he wants me to talk to the teachers.  "Mom," he says, "I got this.  I can handle it."  The incidents have mostly been name calling and hurtful words, so my inner mama bear is content to let things play out.  Also, I can tell that Peter is loving the activities and enjoying the company of the other kids and teachers.  That he is getting an unexpected lesson on how to stand up for himself is all the better.  I'm now the one learning from his leadership and behavior!

Peter Dankelson - 12 years old - Goldenhar Syndrome

The Wonder of Wonder

Contagious acts of kindness started taking place in classrooms around the country this school year.  Many teachers were inspired to read the book Wonder by R.J. Palacio with their students.  For the classes that read the book, the message will remain with them forever:  Choose Kind.  

CCA was thrilled to come across such a positive story about a young boy living with a facial difference and wished to give it our full support.  We have always wanted to develop an educational outreach program to schools, and Wonder gave us the bridge to do finally do it.  Throughout this school year, CCA offered supportive materials to teachers, promoted the book on our website (ccakids.org), launched the "Choose Kind Challenge", offered to connect students with real-life Auggies, and developed simple and inexpensive merchandise for kids to show off their support.

From simply reading this book, random acts of kindness toward those living with craniofacial differences is happening. For the first time, our CCA kids have a platform that is encouraging them to be proud of and show off their differences.

I witnessed so many amazing things transpire this school year!  Like this photo, for example, of students leaning in to be close to Peter after hearing our "Beyond the Face is a Heart" presentation.  These students are definitely not showing any fear of getting the "Stinky Cheese Touch or Plague!"  How amazing is that?

Peter Dankelson with Students from Power Upper Elementary in Michigan
May 2013

I've watched student-created tribute videos like these that honor CCA kids.

Standing Ovation for CCA WonderKid Peter from 5th Graders in Baltimore

Standing Ovation for CCA from Versailles Middle School in Ohio

You are Beautiful video by The Princess Generation Book Club for CCA WonderKid Camryn

I've been brought to tears by student thank you notes like these from 4th & 5th graders at Pine Knob Elementary in Michigan.

Thank you so much for coming in to talk to us!  I learned a lot about being different and how it feels.  You are an awesome kid, you are very, very brave.  Also, thanks for telling us and reminding our class that you shouldn't judge someone on the outside,
because it's what's on the inside.  From, Chloe

Thanks so much for stopping by our class, Peter!  Your presentation really made an impact on my life!  You're a really funny guy!
I hope you have a great summer and cross your fingers and hope you get picked to star in Wonder!  From, Matthew

Dear Peter, Thank you for coming into our classroom on Thursday.  You really enforced the choose kind rule.  Also you are a brave boy because of how many surgeries you have went through and how you come places to talk about CCA.
Lastly, I thank you for giving us the bracelets.  You're a great kid.  Sincerely, Owen
Thanks Peter for coming in and telling us about CCA.  You told us a lot.  Guess what, when I got home I searched Auggie on the Internet and a picture of you came up.  You're famous!  Your Friend, Grace!

To Peter, Thank you for coming in to our class.  You were brave to come and talk about what you have.  Is CCA in Michigan or out of the state?  Do you like going to different places?  You are so funny!  I wish I had a remote and could rewind that whole presentation because that was really fun.  Do you know Mrs. Conner because I am her son.  I am so glad you could come here.  I hope you can come here when I am in 5th grade so I can see this again.  Do you want to play Auggie in the movie Wonder if they make the movie?
My Mom says Hi.  By, Jack
Even though you look different you have a big heart (no name)

Peter, thanks for coming in and sharing such valuable lessons that you have learned over the years.  We all really appreciated it.
It was very special meeting you.  Thank you for all the great stories and lessons!  They taught us a lot!!  Thanks, Abbey

Dear Peter, Thanks so much for coming to our classroom.  I would love to see you again so you can tell us more about yourself.  I really want to read the book Wonder and I hope you get picked to play the role of Auggie.  I don't care what you look like!
I care about the inside!  Your friend, Lily
Dear Peter, Thank you for coming in and teaching us about the CCA and yourself.  It does not matter what is on the outside, it matters what's on the inside and you are beautiful on the outside.  Sincerely, Ally

Thank You.  Dear Peter, You are the best kid I've ever known and your presentation was the best.  And I learned that the looks don't matter, the character matters so thank you.  Your buddy, Kyle
Peter - Thank you for coming in.  I learned a lot about you.  You are such a brave kid to have all those surgeries.
From, Alana (who also drew the "Everyone is Different" picture

Dear Peter, Thank you for coming to our classroom.  You made a big impact on me... even though you can look different,
everyone should be treated the same and with kindness.  Sincerely, Stephen

And, these Thank you notes from Portola Hills Elementary in California... Peter Reading Thank You #1 and Thank you #2.

I've read newspaper articles like these covering the book and creating awareness about CCA.

Newspaper story about how CCA Mom, April Gorman, inspired her community to read Wonder Wonder the book: Choose to be Kind published in Lake Highlands Texas paper

Newspaper story covering CCA's "Beyond the Face is a Heart" presentation to students Student Brings Touch of Wonder to School published in Farmington Michigan Observer

I've seen entire communities read Wonder and then embrace CCA's vision of "a world where all people are accepted for who they are, not how they look".  The cities of Santa Monica, Naperville, Rhode Island, and Tacoma are just a few that hosted community reads of Wonder and then passed out CCA literature at book discussions and author visits (R.J. Palacio visits Santa Monica)

I've witnessed students complete CCA's "Choose Kind Challenge" by donating their own money in support of kids like Auggie.  

Students from Sweet Home Middle School in New York bought CCA's Choose Kind wristbands

Students from St. Patrick School in Michigan donated over $400 and
purchased wristbands, buttons & bookmarks

Wonder is an incredible tool that teaches kids about empathy and kindness; it is destined to become part of every school's curriculum.  I have no doubt that acts similar to those mentioned here will occur in classrooms next school year.  CCA's own "Kindness Ambassadors", who are sharing the story of Wonder and bravely showing off their differences, are the real-life heroes who are making a positive impact in their schools and communities.  Bravo to these teachers, students, libraries, and CCA Families everywhere.  As Summer would say, "You are all "Cool Beans!"