Sunday, August 26, 2012

Grateful for...Community Acceptance

When we moved to Texas from Indiana almost 2 years ago, we hoped we would be welcomed to our neighborhood with open arms. Although we settled into our new home just as "Craniofacial Acceptance Month" was coming to a close I knew I wanted to host a picnic the following year.

Over the next year we became great friends with our neighbors and started both boys in preschool. We got involved in the community as much as we could - taking on volunteer roles, participating in neighborhood activities, etc. Before long, we felt that Texas had in fact become our "home".

In September of last year, I hosted my first Craniofacial Acceptance Month picnic. I invited our neighbor friends and the families of children in Aiden's preschool class who had gotten to know a little bit about craniofacial conditions from him at school. I hung posters in our Resident's Club and at local businesses around town. During our time in Texas, I had also met a few local families who were affected in some way by craniofacial conditions, so I reached out to them inviting them to the picnic too.

For the big day, we rented a bouncy house, served drinks (donated by our local grocery store) and had information about CCA, Aiden and Apert Syndrome ready for anyone who wanted to learn more. On the day of the picnic I was nervous that nobody would show up however we had a great turn out! Many of Aiden's classmates came and all of our neighbors who had become great friends were there as well. There were even a few families we had never met, but who recognized Aiden from the community and wanted to show their support.

We were so happy that people were genuinely interested in supporting Aiden and in learning about craniofacial conditions. Having the opportunity to spread awareness brings about acceptance. We were grateful to feel the acceptance within the community.

As September approaches, please think about hosting a picnic for Craniofacial Acceptance Month in your area. Contact CCA at 1.800.535.3643 to request materials that can help you promote acceptance month by organizing a picnic, hanging posters and/or ordering other CCA materials to help spread the word.

To read more about and see pictures from the picnic we hosted last year, click HERE.

Thursday, August 23, 2012

The Power of First Impressions

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

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

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

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

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

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

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

Saturday, August 18, 2012

Grateful for good doctors

This week I am thankful for a great doctor's office experience (really, I mean it!). My ENT, who has seen me for well over a decade, actually took the time to sit down with me and review my medical history and talk about some options for the future. I am sure I was afforded this opportunity because I was the last patient of the day, but as he sat down into the chair across from me, my doctor, usually harried, brusque and casually loud, was sincere and reserved. He looked over my charts and even reminisced with me a little -- until I made him feel old, haha!

I am grateful for this experience because I feel uniquely privileged to have had access to his expertise for so long. In that time, he has developed a keen sense on when to medicate a condition and when to ride it out. He knows the past procedures I've had, with him and other surgeons, and which ones seem to help and which ones don't. He even knows not to give me nasal spray unless I "really need it," as I am definitely not a fan of nasal sprays.

I'm fortunate to have been under the care of a physician who cares about me and has developed a relationship with me over a long period of time. Doctor / Patient relationships sometimes feel frustrating, but my ENT has been a great health and wellness resource for me throughout my life. To him, I'm definitely a real person and not just a file stuck in a door. And for that, I'm grateful.

From guest-blogger Erica Mossholder

Wednesday, August 8, 2012

An Olympic Challenge

I have Olympic fever! I've been officially obsessed with the Olympics for the past week despite almost every event that I've DVR'd being spoiled by Facebook, Twitter, Huffpo's Medal Count and my office mates.  I still loving watching the events even though I know who was named Gold, Silver and Bronze.  It is no less (well, barely less) thrilling to witness the amazing feats these athletes accomplish.

Many of these Olympians are role models for today's kids, just like the Olympians I remember watching as a little girl. I have fond memories of watching the Magnificent Seven compete in the 1996 Olympics. They were far above average in every way, but yet they looked a bit like older girls that I looked up to; like friends who shared neon gel pens and poofy bangs.  They were just like Gabby, Aly, Jordyn, Kyla and McKayla are:  a shining example of what hard work, skill, courage, enthusiasm, and team spirit can do for a group of young women, a national team, and an entire country. 

All kids need role models and positive examples. CCA's mentorship and family network connects real-life role models to kids and families nationwide. CCA has been in existence for over 20 years and in that time numerous families have found empowerment and hope through looking to each other.

CCA needs those individuals who've relied on the organization to step up as role models.  Many members are already doing this as evidenced by our growing community of teen and young adult mentors. These efforts can also be seen in CCA volunteers who are investing their talents in the organization, expanding their networks, enlisting their friends, donating money and focusing on fundraising. 

Our family fundraisers significantly contribute toward helping younger craniofacial children meet and stay in touch with positive role models. During tough economic times, CCA has not been immune to shrinking donations. Now is the time for young adults to use that signature Millennial can-do attitude and boundless enthusiasm to raise money for the generation coming behind us. Many of us were fortunate to grow up with CCA, and now it's our turn to continue that legacy and become role models in all ways, including financial commitment. 

I have an Olympic-sized challenge to issue to all of our members: Set a "Golden Goal" for fundraising that you think you can achieve by the end of this year. What will you contribute to CCA?  Here are some ideas to get you started.
  1. Create a FirstGiving page to earn online donations (view Peter Dankelson's page for an example)
  2. Host an event (silent auction/dinner, golf outing, 5K/10K... be creative!).  Call CCA's office at 1-800-535-3643 and ask for Jill.  Remember that in order to host an event and be awarded the retreat hotel incentive, you must first sign a contract with CCA.
  3. Set up a recurring monthly gift (visit and click on the "donate" button to set this up)
  4. Collect money at work or school to raise awareness and spread the word that "Beyond the Face is a Heart!"

No goal is too large or too small and every gift makes a positive impact on the awesome juniors in our CCA family!