#Thankful Thursday Dede & Peter Dankelson Celebrate Kindness with CUSD 6th Graders

By Dede Dankelson 

The novel Wonder by R.J. Palacio plants the seeds of acceptance and inclusion to all who read it. Chris Jones, a middle school teacher in Capistrano Unified School District in Orange County, California, recognized the positive impact this book would have on students.  She took it upon herself to develop a 6^th grade curriculum using the #ChooseKind theme in Wonder.  Mrs. Jones piloted the program last year with two schools in the district and then offered it to all 6^th grades for the 2016-17 school year. 

Peter with Ladera Ranch Middle School Teacher, Chris Jones

Peter & Dede with Don Juan Avila Middle School Principal, Josh Wellikson

The curriculum includes lesson plans developed and organized by Jones as well as materials from both Random House and Children’sCraniofacial Association.  She worked locally with Coto de Caza Charity Classic’s annual fundraiser, raising enough funds to purchase a copy of Wonder for every 6^th grader in the district.  CUSD is one of the country’s largest school districts with fourteen middle schools and about 4,000 sixth graders.  Nine of the fourteen middle schools participated in the #ChooseKind curriculum.

Ladera Ranch Middle School Projects

Project from Shorecliffs Middle School

In addition to hosting a training session for all the participating teachers, Mrs. Jones invited each school to host a #ChooseKind Wonder assembly.  My 16-year old son, Peter Dankelson, and I traveled from Illinois to California, bringing the story to life for Capistrano students.

Marco Forster Middle School

1 of 3 Assemblies at Ladera Ranch Middle School

Aliso Viejo Middle School

Peter and our family, like all CCA Kids, represent a true Wonder story.  Hearing from Peter gives students a better understanding of what it’s really like to live with a facial difference, why kindness should matter to them, and why it’s not always enough to just be “friendly.”  We educate students about trachs, feeding tubes, cochlear implants, and fake ears in a fun and educational format that puts everyone at ease and invites questions.  We explain why these devices are needed and how they are used.  Students get to hold each device, including Peter’s prosthetic ear!  By the end of the assembly, kids are no longer thinking about Peter's facial difference but are, instead, more interested in his favorite Star Wars movie or video game.  Making the real-life connection reinforces Wonder’s lesson about the value of diverse friendships and how anyone can #ChooseKind anytime, anywhere.

Vista del Mar student asks Peter if he wishes he could change how he looks

Selfie with Shorecliff 6th Graders

Peter and I were welcomed at all the CUSD middle schools we visited during our week of appearances.  Students showed us kindness with their applause, standing ovations, and chants of ‘Peter, Peter.’  Amber, a sixth grader at Shorecliffs Middle School, even surprised us by paying for our dinner at a local restaurant!  Another student raised his hand during the Q & A, not to ask a question, but to ask if he could shake Peter’s hand.  As a Mom, it was so heartwarming to witness how excited the students were to meet Peter, have him sign their copy of Wonder, and want to connect with him on social media. 

Peter signing a Wonder-blue cast at Newhart Middle School

Peter signing notes at Shorecliffs Middle School

Niguel Hills student asks to shake Peter's hand

Ladera Ranch students give Peter a standing ovation

Marco Forster students thanking Peter for the assembly

Niguel Hills students having fun in a selfie with Peter

Carl Hankey students pledge to #ChooseKind

When coupled with a real-life connection, students become inspired to cultivate a community of kindness in their school.  Students who are inspired to be kind make school a safe and fun place for everyone! 

Thanks to teacher Chris Jones for bringing this lesson and experience to sixth graders at Capistrano Unified School District.

Poster at Vista del Mar Middle School

Selfie with Niguel Hills 6th Graders

#ChangeTheWorld #ChooseKind

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!

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

There are no Absolutes: How to Handle Bad News from the Doctor

Here's the second post in our "How Do You Handle Bad News from the Doctor?" series.

As parents of children with complex medical issues, we are no strangers to receiving bad news from doctors. Although we've never been dealt what I would consider devastating news, we have certainly received our share of difficult reports and diagnoses.  I still remember what the geneticist told my husband and I twelve years ago just days after Peter's birth.  He said, "This is not doom and gloom, but this is a very difficult road."  He was most certainly a very wise doctor!

The first life-shattering report we received came from the maternal-fetal specialist at my 20-week ultrasound.  That is when we were told that our baby had at least two significant birth defects related to his kidney and jaw.  The doctor's exact words were, "Where there is smoke, there is fire.  You may want to think about terminating your pregnancy."  As you would expect, we were heartbroken and terrified.  I couldn't sleep for days following the news and vividly remember sobbing alone in the middle of the night, grieving the loss of the child I had been expecting. 

What got me through the remainder of the pregnancy was a focused concentration on researching syndromes with jaw and kidney abnormalities.  Searching the Internet was my way of coping and preparing for the arrival of the unknown.  I reached out to several listserv groups that offered very useful advice.  For example, I learned a great deal about micrognathia (small jaw) and found that children with the condition often require tracheotomies to help them breathe.  Before Peter was even born, I was ready for the possibility that he may need a trach.

More importantly, I had quick and immediate access to a group of experienced parents that taught me how to care for him, knew what questions I needed to ask doctors, and gave me advice on how to deal with all the other baggage (insurance, therapy, medical equipment, and so on) that consumed our lives for several years.  To this day, I credit the support and knowledge received from these parents for helping our family survive the first years of Peter's care.  Although I've only met a few of the listserv members, I will forever be grateful to all of them for their encouragement and support.

You never forget where you were, what you were doing, and who you were with when you receive bad news from a doctor.  It's so traumatic that it's forever etched in your memories.  I can recall a doctor telling me that Peter would never chew food or even swallow water.  She told me this with absolute certainty, even though he was only six months old at the time.  What I remember from that appointment is leaving the hospital in tears of grief that eventually became tears of anger before I finished the one-hour drive home.  How dare she deliver such an absolute diagnosis before Peter even had a chance to try?!  From that point on, I became suspicious of any specialist that thought they possessed a crystal ball.  Once you have enough experience, you come to realize that medicine is, indeed, a practice.  The only real absolute is that there is none.

More recently, we encountered a doctor who told us with ridiculous certainty how Peter's life will unfold.  She emphasized all the things she believed him to be incapable of doing while providing almost no positives.  She was disrespectful to both Peter and us as his parents.  I was once again heart broken and grieving the visions I had of Peter's life.  Why, after so much experience, I chose to "buy into" what this doctor was selling is beyond me.  After getting my emotions back in check, I once again sought the solace of research and information.  I met with other specialists and received several other opinions.  They were all in conflict and disagreement with the initial report.  Having these other opinions reassures me that I'm not running from the problem or in denial.  It also means that we are not making life-altering decisions for Peter based on the recommendation of one so-called expert.

Medicine is called a practice for a reason; it's full of uncertainties.  As parents to these medically fragile children, the ultimate decisions regarding their care lies on our shoulders.  It is a huge responsibility, but we have tools that no expert will ever acquire.  We know our child better than anyone else, and we love our child more than anyone else.  Although it may sound insignificant when compared to a seasoned doctor's opinion, I have found it to be a reliable and trustworthy guide.

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!"

Grateful for Grandparents

My youngest son, Jacob, received his First Communion yesterday. Fortunately, we had a beautiful day in Michigan to enjoy such a special occasion!  

My Mom and Step-Dad made the trip from Indiana to Michigan, so that they could celebrate Jacob's First Communion and also watch him play baseball and hockey.  This really meant a lot to Jacob, as he typically only has Mom & Dad cheering him on at games (sometimes Big Brother Peter when I can make him look up from his book or video game!).  All of our family lives out of state, so we don't get to spend much time together.
When Peter was younger, my Mom traveled from Indiana to Michigan constantly to help out.  She was there for most of his surgeries and often came when he was sick. My Mom spent a lot of time at the hospital with us, and I am so grateful to have had her close by during the most difficult of times. Grandparents often have double the worry since they are not only anxious about their grandchild but also for their adult child. They witness the grief, anger, fear, and stress their child is going through while also enduring the heartache of seeing their grandchild crying in fear or pain.

This Sunday I'm grateful for all the CCA grandparents who give their love, support, and helping hands to their children and grandchildren.

Imagine a world where everyone can read...

CCA is participating in "World Read Aloud Day" on March 6, 2013 by sharing excerpts from our favorite book, Wonder by R.J. Palacio. To find out more about this event, visit LitWorld's website.  We hope you enjoy the Vlog post below (be sure to watch the entire video for some good laughs!)

This video is also available on YouTube

Life Lessons from Great Literature

This Sunday I'm grateful for all the teachers who have been sharing the story of Wonder with their students.  What a positive "meditation in kindness" this book is leaving with both kids and adults around the country!

When Peter was born twelve years ago, I would sit by his bed in NICU and worry not only about his critical and complex medical issues.  I was also anxious about how others would treat him, if he would have friends, if he would be bullied at school, and how he would deal with all the stares and whispers that were sure to become part of his daily existence.  How amazing that around the same time of Peter's birth, a little girl with a facial difference made a lifelong impression on R.J. Palacio.  If I had known that such a powerful message of acceptance would someday be written in the form of Wonder, my heart would've perhaps been just a little lighter.

I've always been a self-proclaimed bookworm, so the fact that this campaign to "Choose Kind" comes in the form of great literature is absolutely perfect.  Peter, incidentally, also inherited the bookworm gene.  I love what David Etkin, teacher and founder of #WONDERschools, wrote in his review of the book.

Thank  you R.J. Palacio for choosing to write this beautiful, funny, touching, and powerful story.  It is, indeed, life changing.

P.S. Visit the blog on Wednesday, March 6th, for a special message from Peter & Jacob in honor of "World Read Aloud Day"

Choices

Twelve years ago at my 20-week ultrasound, I was informed that my baby had at least two serious birth defects. The maternal-fetal specialist that delivered the news had no bedside manner and completely lacked compassion. His recommendation was that I terminate my pregnancy.  I walked out of his office that day and never saw him again.  

Eleven years ago, when Peter was only six months old, a developmental pediatrician informed me with absolute certainty that Peter would never eat, chew, or swallow.  She was 100% certain that she was right.  I never saw that pediatric specialist again.

A few months ago, I encountered yet another specialist with a crystal ball.  This Harvard-educated doctor had never met Peter until the day of his appointment but was apparently able to assess everything necessary to predict his entire future.  I will not be seeing her again.

Peter is followed by 8-10 pediatric specialists on a regular basis and has had appointments and evaluations with countless others.  The specialists that regularly care for Peter are the ones who never take away hope and never speak in absolutes.  They are the doctors and surgeons that treat me as an equal part of Peter's medical team, take the time to listen to my concerns, admit there are no certainties, and enjoy watching Peter grow and develop. Peter's team of specialists take pride in his accomplishments, value our family, and use their knowledge and expertise to open doors rather than close them.  The specialists that haven't lived up to these expectations are not part of Peter's medical team.

Sadly, fewer doctors are choosing to go into pediatric specialties.  This is creating longer wait times to secure an appointment and fewer choices for parents of kids with complex medical needs.  What if I had not been able to secure second, and in some cases third, opinions in the above scenarios?  Would Peter have even been born? Would I have invested the time in therapy that enabled him to learn to eat?  While access to care is paramount to Peter's survival, the ability to choose who provides his care is equally important.  No matter what the future of healthcare provides, I hope that parents of medically-challenged children retain this right to choose.

Breaking Free of the Braces!

This Sunday I'm grateful for Peter's beautiful new smile.  He had his braces removed last week after wearing them for only a year and a half.  It's amazing to me how quickly they make a difference and how fast they can be removed now.  Back in my day braces were for high school and you were lucky to get them off in time for senior pictures!

I was particularly eager for Peter to have the braces removed because of recent concerns about his speech.  Increased drooling, difficultly swallowing, poor articulation, and sleep/apnea patterns are primary indicators that let us know more jaw reconstruction is necessary.  We are hoping to hold off on surgery for another year or two, but it is always hanging over our heads as to when the time will come.  All those concerns made me anxious and hopeful that Peter's speech and increased drooling would improve once the braces came off.

Much to my relief, Peter's speech was better without the braces.  His freedom was short lived, however, once he was fitted for retainers.  Unfortunately, his speech with the retainers is even worse than it was with the braces.  If Peter didn't have the craniofacial hurdles to overcome, he would wear both retainers 24/7 for the next month.  Because his mouth is so small, we are only having him wear the top retainer at school.  It is very challenging for Peter to speak and breathe while wearing both retainers at the same time. He is able to manage it while sleeping though.  Eventually (after about 1-2 months), he should only need to wear them both at night and be appliance free during the day.

It was so fun to see Peter smiling from ear to "ear lobe" (wink, wink) as he left the orthodontist without his braces.  Our orthodontist has been fantastic in adjusting Peter's treatment to accommodate his craniofacial anomalies.  The entire experience, although far from over, has been much smoother than I expected.  The results?  Well I may be prejudiced, but I think he looks quite handsome!

P.S. Peter and I had a giggle fest while I was taking a picture of him for this post.  I said, "You are cracking me up with your posing and cheesy smile."  His reply, "Yeah, that's what I was going for." Another thing I'm grateful for.....  such an amazing son that makes me laugh so much!

Happy New Year!

2013 promises to be an exciting year for CCA, starting with the launch of our all-new website at www.ccakids.org.  This new website will have frequently updated information and links, including connections to all of our social media outlets.

One of my favorite new sections is the “Choose Kind Wonder” page.  It includes a comprehensive list of links about the book, including many educational resources.  There is also a downloadable sheet for teachers with instructions on how their students can make a real-life connection to a CCA WonderKid or Sibling!

CCA’s current and past newsletters are available for download on the new website as well as our syndrome booklets, one-sheet overviews, and webinars.  You can also browse our CCA Web Store and check out several clearance items.  Most importantly, the “Donate Now” icon can’t be missed at the top of every page.  Making a contribution is the best way to endorse the new website and to show your support for our other programs and services.  CCA’s existence is 100% dependent on donations from individuals and corporations.

Outreach and support for our affected families remains the highest of our priorities.  For our CCA families, there is information about registering for the annual retreat, applying for financial assistance, family networking, and finding a qualified craniofacial center.  The “Help CCA” section is full of ideas and guidelines on how to host a fundraiser, examples of successful family fundraisers, and information about the “Retreat Reward Program”.  Resources about how to raise public awareness will be added as we expand the content.

The CCA Board and Staff look forward to serving our families in 2013.  Useful tools like www.ccakids.org and new programs like the CCA WonderKid project are sure to help us “Widen the Circle of Acceptance” and to fulfill or mission of empowering and giving hope to individuals and families affected by facial differences.

Dede Dankelson
CCA Board Chair

Make Some Time for Fun

As the frenzied excitement of parties and shopping takes over this December, it’s always nice to try and keep life in perspective.  The best means I have of doing that is through the constant humor and original comments of my two boys ages 12 and 8.  Here are a few recent examples that will hopefully give you a smile…

Peter's teacher told me about an incident at school that had everyone laughing in his math class.  His teacher was explaining fractions while using a visual aid with stacked plastic parts.  While removing some of the pieces they became stuck and wound up flying all over the place.  One happened to hit Peter square on the head.  He then promptly looked his teacher in the eye and said, “Is this how you are trying to get fractions into my head?”  He quickly followed that comment with, “You know, fractions sure give me a headache!”

Jacob, who is in second grade, recently informed me that our country has never had a girl president because, “Girls always use exclamation points at the end of their sentences.”  Well, I thought, that could explain a lot! (Please note the strategic and, I believe, appropriate use of my exclamation point).

Peter, while riding in the car with me this week, realized he was sitting on the charger for my phone.  He promptly held it up and said, “I thought I was feeling a little extra charged!” (Please note my appropriate use of the exclamation point again)

After school yesterday, Peter excitedly hops in the car and reports that he has the best news EVER.  Wow, I thought, what could this be?  “Our English test for tomorrow is cancelled,” he said.  Seriously, I thought?  That’s the best news ever?  I didn’t exactly get as jubilant as Peter was, but I could appreciate his excitement—one less test to study for tonight.

Isn’t that exactly what we often wish for:  a little less responsibility and a lot more time for fun?  It is something to keep in mind during this hectic month.

Thank You for Choosing Kind!

How wonderful that the "Choose Kind" message from R.J. Palacio's book Wonder is being embraced in classrooms around the country!  Teaching students to be accepting of differences and choosing to act kind toward others is a powerful lesson that will stay with these kids throughout their lives.  Having them connect with real-life people who have facial differences solidifies that lesson even more.

If you have been following our blogs about Wonder, then you know that CCA began selling the book just a few months ago.  The Power of First Impressions announced our endorsement of the book.  We then participated in the #WonderSchools Blog Tour, by posting Every Kid Needs a Hero.  A 5th grade class in Baltimore saw the blog and, after reading Wonder, acted on it's message by choosing to give a real-life Auggie his first standing ovation.  What a wonderful way of embracing the book's message to "Choose Kind".  Here's the Standing Ovation for Peter video that Reilly Posey's 5th graders created .  

As a real-life Auggie's Mom, I can't recall ever being so touched as I was when watching this video.  I have always said that our CCA kids leave a powerful impression on everyone.  As their parents, I believe it is up to us to make sure that impression is overwhelmingly positive.  After drying my eyes, I told Peter that he should send a video message back to Reilly Posey's class thanking them and sharing his opinion of the book.  What ensued was a great evening where my two boys wrote a skit, rehearsed, and eventually produced Peter's Precept Video.  What a fun family project.  We had a lot of laughs together that night-- lots of ear humor!

Peter's Precept video has now been viewed over 500 times on YouTube, and I'm proud to say that my family is doing our part to spread CCA's message that "Beyond the Face is a Heart" while also promoting Ms. Palacio's campaign to "Choose Kind".  But, it doesn't end there...........

This morning, I was blown away to read the following email from Deb Tyo who teaches at Versailles Middle School in Ohio.  "Dede - Please tell Peter how much he has inspired us.  Because of Peter this is happening...  To Our CCA Friends.  I believe the entire middle school from 6-7 grades shared the book as a school-wide read.  How amazing is that?!  And, how about that video?  I'm still choked up and overwhelmed with gratitude.  This book and these teachers are improving the lives for CCA families everywhere-- the affected kids, their siblings, and their parents.

CCA parents have faced sadness, fear, grief, and anger following the birth of their child.  They have spent anxious hours worrying about teasing and bullying at school.  And, they have endured many agonizing days and nights sleeping in hospitals, waiting in emergency rooms, and driving to/from specialty clinics and therapy sessions.  For all this, our CCA family is finally receiving some gracious acknowledgements of acceptance.  Let's return the kindness by expressing our appreciation for those who are embracing the "Choose Kind" movement.  Make your pledge now at www.choosekind.tumblr.com.

CCA Families created the following video at the "2012 Cher's Family Retreat" as a thank you to all of those who support and embrace our vision of a world where all people are accepted for who they are, not how they look.  I can't imagine a more deserving audience for it's debut.

Thank You from CCA!

Finally, my standing ovation goes out to the following for their amazing acts of kindness...

• R.J. Palacio for writing Wonder
• Random House for creating the Choose Kind website
• @DavidAEtkin, the teacher from Buffalo who started #WONDERSchools
• Reilly Posey (@PolkaDotOwlBlog) & her 5th Graders in Baltimore for their Wonder Blog & Peter's Standing Ovation
• My two amazing boys Peter & Jacob for promoting the Choose Kind campaign and producing Peter's Precept
• Deb Tyo (@ChocolateAir) & Versailles Middle School for their Wonder Blog and CCA Standing Ovation
• Sherry Gick (@LibraryFanatic), a school librarian from Indiana, for her assistance in launching #WONDERSchools

Proud Mom of CCA Kid Peter (age 12) & CCA Sib Jacob (age 7)