Study Participants Needed For Patient Feedback Research

 University of Washington students are doing a research study to learn more about how to improve post-operative care and communication. Their hope is to learn the needs of the patients after their surgeries through this survey. After you read the project description and take the survey, a University of Washington researcher may call you to ask some more questions about your experiences. This should take around 30 minutes of your time.

'Wonder' Curriculum.Choose Kind Pledge, and More!

                                

Let Children's Craniofacial Association help you bring R.J. Palacio's "Wonder" into your school's  curriculum this year by reading the book, using CCA's cool program packs, and inquiring about having a "Real Life Auggie" visit your school. Learn more about all that we have to offer at our "Wonder 4 Schools" webpage. 

Would your child like to be one of our CCA WonderKids? We are contacted by more and more Elementary and Middle schools who want to be connected with a "Real-Life Auggie," who is the main character from the book, "Wonder." This is one of the elements of CCA's Choose Kind program. 

Contact Annie Reeves for more curriculum options created specially for CCA or to volunteer in the Real-Life Auggie program. 

Parents, let your schools know all that we have to offer to support them in teaching the message of kindness from this significant book to our community. We have everything from bookmarks to the ChooseKind pledge that your students can take at the beginning of the school year. 

Cards and words of encouragement written by a class after they read "Wonder."

The student response in the schools that have run our programs and curriculum packs has been impressive. Other project ideas that CCA offers students are a penpal program, Skype sessions, and visits by the aforementioned "Real Life Auggies", our CCA Kindness ambassadors. Your students could be writing letters, sending cards to the Wonder Kid we assign you. Many receive standing ovations at the assemblies  they are part of when they visit the schools. 

Learn more about all that we have to offer at our "Wonder 4 Schools" webpage. 

If your child would like to volunteer to visit a school or if you are interested in CCA's curriculum packs, contact Annie Reeves, [email protected]. Your child must be between the ages of 9-18 to participate. 

Also, check out Random House and Lionsgate curriculum collaboration and make your classroom a Certified Choose Kind classroom. 

All of these cool ideas will help you teach this important book to your children. Hopefully, it will change the way they see and treat others this school year and in the ones to come!

#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

Overview: The Dark Side of Social Media

We have a new overview to debut to celebrate #CAM2016. The focus is on The Dark Side of Social Media.

Thanks to a former colleague of Erica's, Dr. Pavica Sheldon of the University of Alabama in Huntsville, we are able to further explore the topic of social media this year.

At CCA, we work to bring you professional resources that cover topics relevant to the craniofacial community. "The Dark Side of Social Media" is an important topic to discuss with your children, relatives, and friends.

Social media is an incredible tool helping many people connect with one another for support and acceptance. However, it can also be a source of negative interactions, promote social isolation, distorted perception of self, and open users up to identity theft.

This overview helps you establish boundaries for your family by understanding and discussing the benefits and risks of social media.

Thank you, Dr. Sheldon, for lending your expertise and volunteering your time to CCA!

Taking On College: Part of the Journey

Today on the blog we have two stories from our CCA Alums & Adults committee. Growing up with a facial difference often involves a lot of talking about yourself: Introductions... answering questions... explanations... and as we move into college and career, sometimes that means giving interviews, too.

As both Joe Brooks and Casey Deakins can express, there are good days and bad days but in the end, we only increase awareness and acceptance by making connections with others. And that is just what these two CCA Alums are doing well!

Today we're proud to feature a reblog from The Blue & Gray Press, The University of Mary Washington's student newspaper where Joe Brooks is a student -and- a personal graduation essay from Casey Deakins, who just graduated from The University of Central Florida. Enjoy these stories and if you're interested in joining the CCA Alums & Adults, contact us on Facebook.

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By NANCY MILROY

“My face looks like this. It doesn’t mean I’m any different from you. I have Otopalatodigital syndrome, a craniofacial disorder.”

When Joe Brooks, a junior music major at the University of Mary Washington, contacted me, I was unfamiliar with this syndrome and disorder. Joe handed me a pamphlet from the Children’s Craniofacial Association (CCA) and advised that I read it. Reaching out to the Humans of UMW community is part of Joe’s effort to inform us that September is Craniofacial Acceptance Month.

Craniofacial conditions vary, the most common being cleft lip and palate. You may be thinking, “Acceptance, sure. That’s easy.” But do you, reader, actually practice this?

Acceptance is more than the quick smile you formulate when you pass a person with craniofacial differences. Acceptance is recognizing an individual’s qualities without the motive to change them. CCA’s message of acceptance is that “beyond the face is a heart.”

When asked if he had faced a lack of acceptance at UMW, Joe replied, “Not on campus, no. It was in middle and elementary school when I did not feel accepted.”

However, Joe’s sentiment changed when he began to attend Cher’s Annual Family Retreat.

“I got this shirt in Arizona at the retreat. Children who have different craniofacial syndromes come together and are reminded that we are not alone, that we all have similar stories,” Joe said.

These stories are centered around the many surgeries that individuals with craniofacial disorders undergo. In 2009, Joe had a surgery that kept him in the hospital for three months.

At the close of the interview, I asked Joe a spotlight question traditional to Humans of UMW.

What is a metaphor for your life?

“My life is climbing mountains with rough terrain. I’ve had to climb different obstacles to get to where I am today. I’ve had to overcome the mountain of surgeries, the mountain of recovery, the mountain of proving to people that I can do things that they can do and the mountain of overcoming my own challenges.”

What mountain are you climbing now, and have you reached the top? If not, when will you?

“The mountain of graduating. I’m not on top yet, but I’m climbing.”

***

In late 2008, I was sitting in a meeting with my dad, listening to a local college essentially tell me I wouldn’t be able to graduate college. That night, after the meeting, I wiped away the tears of frustration, and told my reflection in the mirror, “I’ll show them.”

On August 8^th, 2015, a little later than anticipated, I crossed the stage of the “Dungeon,” aka, the University of Central Florida CFE Arena and received my Bachelor of Science Degree in Public Administration with a focus and professional certificate in Nonprofit Management.

A ten year long journey finally came to a close. On my journey, there were tears, frustration, and countless amounts of money spent on textbooks (...still trying to figure out that one but I’ll leave that story for another day!). But most importantly, I had support. Support of friends, of family, and my faith. They kept the little voice inside me going, the one that said, “I think I can, I think I can!” like the little engine from the children’s story. I would have given up in 2008 if it wasn’t for this support.

If I were to give a piece of advice, I would say to believe in yourself, and surround yourself with those that believe in you. They will drown out the ones that say you can’t. And, to the world, I say this….you ain’t seen nothing yet!

- Casey

***

Congrats to these two and thank you for sharing your stories during #CAM2015!

New Overview Published! Cyberbullying: An Overview + Resource Guide

We have a new Overview to share with you today! 

As part of CCA's commitment to providing resources for families affected by facial differences, CCA publishes several "One-Sheet Overviews" each year. Our newest overview is a little longer than "one sheet," but we think you'll find it very informative! Thanks to Dr. Earl Gage at Kids Plastic Surgery in St. Louis, we are able to share this overview and resource guide on Cyberbullying for Parents, Teachers, and Students with our families and communities.

Currently, this overview is available here on the blog and Google Drive and it will soon be available on our website, too.

Teachers: Share Wonder with your Students!

It’s back-to-school time, and CCA wants to help teachers kick off the year in a fun and positive way.  Wonder by R.J. Palacio teaches students to #ChooseKind while also meeting national core curriculum standards for 5^th grade literature.  Because the book is enjoyable for nearly all ages, many schools and communities have chosen Wonder as an all-school or all-community read.  The story is filled with relatable characters that combine into a powerful message about one boy’s first year at a new school.  The boy, Auggie, has a facial difference and, as you would expect, encounters several trials throughout the school year.

Through Wonder, craniofacial families now have a mainstream platform that encourages acceptance toward those who look different.  We’ve developed materials to assist teachers and to help us achieve our goal of having Wonder in every school around the country.  Free posters, reduced rates on classroom sets of books, a Reader’s Theater script, and the opportunity to connect with a Real-Life Auggie are just a few of the things CCA offers.  Browse the links below to help your own classroom join the #ChooseKind movement this school year.

• Visit http://www.ccakids.org/wonder-4-schools.html to request a free “Educator Packet” that includes classroom posters, CCA’s newsletter, and information about how to connect with a Real-Life Auggie and participate in CCA’s #ChooseKind Challenge.
• Order Wonder Gear at http://www.ccakids.org/wonder-gear.html.  There are several low-cost items like bookmarks and #ChooseKind bands that can be ordered in classroom sets.  CCA also has t-shirts and special-edition copies of Wonder for $10 or less.  Purchasing any of these items recognizes your students for accepting CCA’s #ChooseKind Challenge.
• Request help purchasing books.  CCA offers reduced rates on classroom sets of 30.  We also have an ability-to-pay form that can be submitted by following this link http://www.ccakids.org/assets/wonder-donation-request-form.pdf.
• Find out how other teacher’s use Wonder in their classrooms and share your own ideas.  Check out this link http://www.ccakids.org/wonder-links.html to connect with the educators that started #WONDERschools on Twitter.  This group shared and collaborated on Wonder-related activities with their classrooms.  We invite you to share your own curriculum ideas with CCA by emailing them to [email protected].  CCA is adding a curriculum page to our website, and we are looking for your contributions!
• Contact CCA’s Program Director, Annie Reeves ([email protected]), to have your classroom connect with a Real-Life Auggie.  The CCA office has a network of volunteers all over the country that will visit or Skype with your students.  My own son, Peter, and I enjoy meeting with a class or school after they read the book.  We’ve developed a presentation that relates events from Wonder to real-life events encountered by craniofacial families.  Visit www.petesdiary.com to request a visit or Skype with Peter!
• Stage a Reader’s Theater of scenes from the book!  CCA offers a free Wonder Reader’s Theater script that includes more than ten scenes from the book.  Students love to step into the roles of their favorite characters and share their enthusiasm for the story.  Contact [email protected] to request a PDF copy of the script.

Wonder is about a boy who looks different, but the message applies to everyone; we are all, in fact, different!  We all have the power to CHOOSE kindness every day.  We make an impact on everyone we encounter throughout a day, even if it’s a quick smile or smirk in the hallway.  It’s a simple choice with powerful consequences.  Wonder wraps this message in a story that makes it “Cool to be Kind.”  What a fantastic way to kick off the new school year!

Choosing kind,

Dede

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.

Our Journey to ASL

Our Journey to ASL - American Sign Language
by Rose Seitz

My son, Freddie, was born in 1992, three months premature, diagnosed with Goldenhar’s and a multitude of health issues.  The first year was a challenge but was also filled with much joy, watching him grow, smile, laugh and enjoy life.  He had a trach and was not able to vocalize very well so we started teaching him sign language at 6 months.  He caught on quickly and was soon signing in sentences.  At that time our sign language education consisted of my frequent trips to the library gathering all of the books I could find on the subject.  No Internet for me, it was 1992.  

At that time he was hearing but at the age of one we noticed that his hearing started to diminish.  All of the hearing was gone by the time he was three. Over those three years we had been bringing him to speech therapy at our local hearing and speech center.  The therapist was teaching us signs as he was learning them.  I labeled EVERYTHING in our house with sticky notes. Shoes had sticky notes: “SHOES,” and we would show him the sticky note, the shoes and sign shoes. You name it, it had a sticky note.  When he was three we enrolled him in pre-school.  At that time we all knew sign language for 3-year-olds but now it was time to learn some syntax so our entire family -- grandmas, grandpas, aunts, uncles, cousins, friends and even his pre-school teacher and her husband -- enrolled in a sign language course at the local hearing and speech center. 

This was a new chapter for us, as we started signing in more “English” structured sentences.  You should know there are a couple of different schools of thought out there regarding teaching a deaf child sign language.  Some believe that a deaf child should be taught ASL, which is a separate language from English.  It has its own syntax. It is not English syntax.  Some believe that a deaf child will learn better if they learn ASL first while others believe in teaching the child SEE, Signing Exact English.  Every spoken word is signed in the same order.  It was back to the library for me.  I read every book, pro and con, I could get my hands on so I could decide what would be best for my son.  Ultimately, we decided we would sign SEE until he reached a point in his teen years where he could transition into ASL.  I believe we made the right decision for him.  

He started reading at age 4. The first book was Joshua James likes Trucks.  We read the heck out of that book.

We used SEE primarily until the 5^th grade.  From Kindergarten thru 4^th grade, Freddie attended a mainstream school that had a hearing impaired unit.  We had decided to send him there instead of our home school district as they had teachers who could teach a deaf child to read and write.  The problem with that was they treated deaf students just like they were “impaired.”  Thru MANY struggles in that school district we finally transitioned him into our home school district in 5^th grade.  I’d like to take credit for the move but it was really Freddie who wanted it.  He wanted to attend the same school district his brother went to and he wanted to be treated like everyone else, who could blame him?

That year an angel, in the form of Miss Irene, entered our lives.  Miss Irene is a deaf woman with a Masters of Education in Deaf Education.  She had just retired from a local school district but not for long.  She became Freddie’s tutor and mentor and continues to be a mentor to him today... to all of us really.  She taught him about Deaf culture and ASL.  This began our transition into ASL.  He started using it more and more until I started to notice that he used it primarily in High School with his interpreter and Miss Irene.  The funny thing is he would still sign SEE to me and even when I would ask him to sign in ASL to me, he would refuse. 

As Fred went off to College in Rochester, NY -- 5 hours away -- I noticed that his ASL signing was getting out of hand! I couldn’t understand him when he was talking to his friends at RIT!  I wouldn’t have that so I enrolled at the local hearing and speech center again, this time to learn ASL.  He has far surpassed my signing skills and truth be told, my finger reading is BAD.  I can fingerspell but when it comes to reading it, I have decided that part of my brain simply doesn’t work!

Freddie has arrived to ASL but my journey continues.  I continue to learn ASL whenever I speak to a deaf person.  There are always signs I do not know and have to ask what they mean, but I think that is the nature of language.  There have been a few times that I knew a sign that Freddie didn’t know... boy, did that make him mad!  So I will continue my journey and every once in a while I get a little nugget, that sign he doesn’t know, just so I can remind him that I can still teach him a few things.

Photo by Larry Mohn

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Many CCA Kids use sign language and methods other than speech to communicate. If you're interested in learning sign language, most libraries across the country offer free video and online programs. Plus, the internet has dozens of great resources, including videos, self-study schedules, and quizzes for you.

Got 20 minutes? Why not start learning your first 100 signs: