Tuesday, September 29, 2015

Sisters from Around the World

Keeping with the theme of celebrating acceptance during #CAM2015, today we're reblogging this post from TheMighty.com. The Wetmores of Tyler, Texas are a family who truly understands the the beauty of acceptance and kindness, and they have nurtured a wonderful family of siblings from across the world. As you watch this video, keep in mind what Dad, Thom Wetmore, says, “It’s just amazing how your daughter that you look at as just a normal, everyday child that looks a little bit different has changed so many lives... Because you realize it’s OK to be who you are.” Well said, Dad! 

Monday, September 28, 2015

Duck Dynasty's Missy Robertson Q&A for CCA

Today we have a very special treat on the blog! Missy Robertson, Mom of Duck Dynasty fame, is releasing her new book next week (October 6, 2015) and reached out to CCA to tell us a little bit more about the story, which includes embracing the cranio journey with daughter Mia, who was born with a cleft lip & palate. Known for their family and faith, the Robertsons desire to bring awareness and attention to children with facial differences and as such, wanted to be a part of Craniofacial Acceptance Month. Below you'll find CCA's exclusive interview with the author and some great photos, too. 

CCA: When did you start writing the book and what made you decide to write it? 
MR: I started writing this book, Blessed, Blessed... Blessed, with Beth Clark in November of 2014. The reason I wanted to write it was due, in part, to the overwhelming response our family received from the “Stand By Mia” episode of A&E’s Duck Dynasty that aired in March of 2014.  I didn’t realize how little people knew about this condition and about the stigma involved with cleft lip/cleft palate.  Because it is a facial deformity, it is difficult for people to talk about.  But because of the publicity of Mia’s surgery and the openness that our family has to expose our real lives, we were able to bring awareness to this condition and show how we’ve trusted in God to guide us through the entire journey with our daughter.

CCA: What would you say is your interesting writing quirk? 
MR: I write like I read, and I read like it’s in real time.  I like to picture the people that I’m reading about, and I imagine them actually talking to me so that I can fully understand it.  Since we don’t always talk in complete sentences, sometimes I write in broken sentences for emphasis.  I’m sure my editors don’t appreciate that quite as much as I do!

CCA: How did becoming a parent change you? 
MR: Jase and I waited almost five years before having our first baby, and I personally did many things to prepare for him.  I went to parenting classes at church, read parenting books and got much advice.  However, I soon realized that having a baby doesn’t just change your life, it can turn your whole world upside down!  Being solely responsible for another human life is an incredible responsibility; and until you engage in it yourself, you just can’t understand fully what it is like, no matter how much you prepare!

CCA: What advice would you give to new families just beginning the cranio journey? 
MR: The best advice I can give is to take each step or phase one at a time.  Do not get bogged down in the entire life-long plan.  Each child is different, and there is no way of knowing exactly what the future holds.  Enjoy the good times in between the hard times. There are many!

CCA: How do you celebrate the child you have and let go of “wishing for a normal life” for him or her? 
MR: When you truly love your child, it doesn’t take long to fully accept them the way they are and the way they were made.  At first diagnosis, when I was still pregnant, all I could think about what how to fix her or change her into what I believed she was supposed to be.  But after she was born and I began to know her as an individual with her own unique personality, it did not take long to realize how much I loved Mia just the way she was.  Sure, we needed to take care of her medical condition in order to give her the best quality of life possible, but we loved her solely for the fact that she was our daughter.


CCA: Can you elaborate on “fixable” vs. “manageable” problems? 
MR: Because neither Jase nor I knew anything about the condition of cleft lip/palate, we just assumed that you can just “fix” this problem like you do a broken bone or a bad cut.  Our eyes were quickly opened during our first visit to the International Craniofacial Institute in Dallas when Mia was 17 days old.  She was poked and prodded by surgeons, doctors and medical staff all day long- all looking for possible related conditions and syndromes.  Thankfully, nothing else was found with Mia, but we were also told that this would be a long journey, possibly until she stops growing in her teenage years, possibly longer.

CCA: How do you balance fiercely advocating and defending your child with modeling kindness and respect for others? 
MR: Thankfully, we have had very little negativity against Mia in her circle of life.  We have a strong church family, a wonderful Christian school and a very supportive physical family who all have Mia’s back when it comes to her condition.  The biggest negativity would probably come from social media.  For example, I chose to delete my Instagram account due to some mean and negative comments that young people would post about Mia. Other social media sites have proven to be very supportive and encouraging, like Twitter and Facebook.  I have to be very cautious about our public role and subjecting my daughter to undue negative and ignorant comments.  Again, this is another reason we would like to bring awareness to this condition.

CCA: What does your family think of your writing? 
MR: My family is super supportive about this book!  Jase helped me stay on point through every chapter.  He would read it and critique it before I turned it in to my editors.  My dad can only read a little at a time because he gets so emotional remembering each step of our journey.  My sisters-in-law have been encouraging and proud of how Mia has handled herself so far in this journey and know it is a story that should be told.  

CCA: For your own reading, do you prefer ebooks or traditional paper/hard back books? 
MR: I read both out of paper book and ebooks, just depending on how quick I can get my hands on something I want to read.

CCA: What is your favorite quote? 
MR: One of my favorite quotes is from a mentor of mine from over 20 years ago.  She said, “The best thing you can do for your children is to love their daddy.”  I have tried my best to put that into practice and show my kids how much I do love Jase.

CCA: What is your favorite book and why?
 
MR: One of my favorite books at this time in my life is Bill O’Reilly’s “Killing Jesus”.  I was skeptical at first, but I decided to read it, and I am so glad I did.  It is told from an historical point of view and tells so much about the conditions and culture of the Jews before Jesus’ birth.  It truly showed me how much the people were crying out for a Savior to relieve them and redeem them and to save them from cruel and power-hungry Pharaohs and emperors.  I highly recommend it to everyone, Christian and non-believers alike.

CCA: How can readers discover more about you and you work? 
MR: Find me on the web at these locations below...
Website: missyrobertson.com 
Facebook: Missy West Robertson
Twitter: @missyduckwife

Blog: Devotional

Missy’s bio: Missy Robertson stars in the record-breaking reality television series A&E’s Duck Dynasty. She is a devoted mother, a sought-after public speaker, and the creator of her own clothing line. She participates in mission work in the United States and internationally, including serving with an orphanage in the Dominican Republic. She is cofounder of the Mia Moo Fund, an organization dedicated to raising awareness and funds to help domestic children and their families affected by cleft lip and palate. Missy and Jase have been married for twenty-five years and live in West Monroe, Louisiana, with their three children: Reed, Cole, and Mia.

Thursday, September 24, 2015

Mom to Mom: A Hug in the Parking Lot

We found this post in one of the craniosynostosis groups on Facebook, and graciously, the author, Xanthe Faulkner, agreed to let me share it on our blog. I believe it's a succinct and beautiful peek into the lives our amazing cranio moms and dads, and a great example of why family networking is so critically important and part of the work we do at CCA Kids. 
***

Why we cranio families are who we are (long!):
So Helmetbaby here is in daycare. And the day he started, 4 months ago, I looked at a boy in his class and thought "Saggital. For sure." But you know how it is - I never crossed paths with his parents, don't know the family, maybe he's already being followed, etc... But we're very public about our son's journey, so all the staff know us and the details of our little guy's condition and journey.
So this morning I was carrying my son across the parking lot towards the school. And a woman I don't know calls to me, softly, and comes over. "I need to talk to you," she falters, "I'm so happy you came just now. The teachers said I should, that I could..." And tears well up in her eyes, and I knew right away. With my son cradled in one arm I wrapped my other arm around this stranger and held her tightly. Of course she was the other little boy's mom, and she had gotten CT confirmation of fused saggital and metopic the day before. "I'm so upset," she said, soft spoken and shocked, "I never expected. I'm beside myself. I forgot all my groceries in the store yesterday. I'm so distracted and scared, I don't know what to do."
She doesn't have Facebook to get support from you all, she hasn't even met with a neuro yet, but I gave her my number. We'll have coffee. I told her my son was fine, more than fine, and that while it had been scary, the results were fantastic. That everything will be okay. And guys, I felt so clearly... That we as cranio parents are the only ones that get it. The sudden fear of realizing they will have to cut your child's skull open and piece it back together. The terror of things going wrong. Worries about their little growing brains. The unknown. And I thought about how people who understand first hand are the only ones who seem to bring any comfort sometimes. You can't fake having been there. And once you've been there, you are driven to reach out to others standing in the new fear,
To hug them in the parking lot,
To whisper,
"I know."
Thank you all for being that for me and so many other families. 
Thank you for teaching me how to be that for others. XO.
-Xanthe Alyse Chefurka Faulkner

Tuesday, September 22, 2015

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.

***

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 8th, 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!

Monday, September 21, 2015

Links of Love is Friday!


There is still time to volunteer, play, or sponsor the 8th Annual Links of Love golf tournament. 

We are looking for registration volunteers (arrive at 6:15am) plus interested teams of four golfers. As always, door prizes & silent auction items will help make the tournament an even bigger success. Thank you!

Hope to see you Friday morning at Bear Creek Golf Course!

Saturday, September 19, 2015

Online Fundraisers for #CAM2015


Issiah Eakright will be having a lemonade stand in his hometown and all of his sales will be going to CCA!! The Lemonade Stand will be in the parking lot of East Haven Tavern (635 Green St. New Haven, IN) on Sunday, September 20th from 12pm - 5pm.
However, if you aren't located in Indiana, you can still help Issiah meet his goal by donating to his online lemonade stand!
Here is how this idea came about... Jessica, CCA Mom says, "We were fortunate enough to be able to go to the CCA's Family Retreat in Newport Beach, CA in June 2015. It was our second retreat and it is an AMAZING time, not only for the children but also for the parents. During dinner at the retreat, there was in impromptu fundraiser. 
Issiah, being the generous little fellow that he is, pledged $100. But he's doing WAY better than that. So, the idea for a lemonade stand was born. Since we can only reach so many people by having a lemonade stand in front of our house, I have decided to make a FirstGiving page so those of you who cannot make it to his lemonade stand can still help him reach his goal."


CCA Program Director, Annie Reeves, is having a big birthday during #CAM2015! To honor her on her special day, she's asking that you donate to CCA via her Birthday Wish funder.  

Annie says, "I will be turning the big 40 on Tuesday, September the 22nd and I would love to raise $1,500 (or more) for CCA! I have been working at CCA for over 12 years and I love my job. These kiddos go thru lots of surgeries, some get bullied at school...but they remain strong and brave. I can honestly tell you these kids are some of the most amazing kids you will EVER meet. They are truly my heroes! Please consider making a donation to CCA for my birthday to help the families we serve."




Love cooking or simply need some meal inspiration? CCA Mom Denise started selling Tastefully Simple 6 years ago as a stay-at-home mom. Her daughter Alexa was diagnosed with some serious medical conditions and since she needed to stay home, Tastefully Simple was her way of contributing to the family. Denise says, "I eventually went back to work full time as a Para-Educator in Special Education and I absolutely love my job. However, I keep up with Tastefully Simple because I love the food and products and it's a fun way to bring in extra income." If you shop as part of her CCA Fundraiser, she's donating her commission to CCA. Thank you, Denise!



Cora is just like any other two-year-old little girl. She loves babies, playing kitchen, going to the park and watching Mickey Mouse Clubhouse. However, the one thing that makes Cora extra special is that she was born with a rare genetic disorder called Craniofrontonasal Dysplasia. This disorder causes abnormalities of the head and face. Many children who have CFND are also diagnosed with Craniosynostosis. This is when the sutures of the skull close prematurely which interferes with normal growth of the brain and skull. Because of this, Cora had surgery at 6 months and 2 years old. She also goes to physical, occupational and speech therapy. She’s a little fighter and works hard for every accomplishment.

During September, Craniofacial Acceptance Month, CCA families, friends, volunteers and related support groups band together to widen the circle of acceptance for individuals with facial differences. The goal is to create awareness of craniofacial differences and to get people to see that “beyond the face is a heart.” We, like every other parent, want our child to be accepted for who she is…which is a kind, fun-loving two year old who loves listening to music, going for wagon rides and watching Frozen. To pitch in, for the month of September Jessica Smith will be donating a percentage of her Thirty-One Commissions to the CCA in Cora’s honor.  If you would like to help this cause, here is how you can order: contact Jessica Smith at (320) 583.0846 or place an order online at www.mythirtyone.com/jsmith4702.



Love jewelry? Want to make a statement? Then, Jenn Lang's KEEP Collective funder is just style! Jenn says, "I have been a designer with KEEP Collective since November. One of my twins was diagnosed with Metopic cranio when he was 4 months old. Craniofacial awareness is near and dear to my heart so I have partnered with Children's Craniofacial Association on this fundraiser. I am donating my full commission to CCA for any sales made using this link. You can order anytime now through October 17, 2015. Order today and you should receive a shipping confirmation the next business day.
New to KEEP? Here's how it works! First choose a keeper----a bracelet or a pendant necklace. Next, choose your keys----charms that will help you show the things that are important to you. The keys slide right on so you can change them or add to your design later on! Need help with a design or have questions? Just ask and check out the Facebook page for awesome #CAM2015 ideas. 

Thursday, September 17, 2015

Today is #NTXGivingDay! Get Sharing!

North Texas Giving Day is here!
Please donate today.

One of the most important things you can do for ‪#‎CAM2015‬ is share this blog post and our online fundraiser for ‪#‎NTXGivingDay.

Please also Retweet our official tweet (the most RTs from a single tweet wins $1000!).

Today, corporations in the ‪‎Dallas‬ area have pledged matching funds for every donation made, starting at 6am CDT on September 17, 2015. Plus, the more donations we receive, we become eligible for bonus prizes and cash grants! Find out more about #NTXGivingDay here: https://www.northtexasgivingday.org.

Thank you for helping CCA send more children to Retreat and helping more families travel to quality medical care. 








Tuesday, September 15, 2015

#NTXGivingDay is THURSDAY!


North Texas Giving Day is this Thursday!

Please Add North Texas Giving Day to your calendar and bookmark this page: bit.ly/1Q65Cl9

One of the most important things you can do for ‪#‎CAM2015‬ is share our online fundraiser for ‪#‎NTXGivingDay‬ and Retweet our official tweet (the most RTs from a single tweet wins $1000!). Watch for it at 6am this Thursday!

On this special day, corporations in the ‪‎Dallas‬ area have pledged matching funds for every donation made, starting at 6am CST on September 17, 2015. Plus, the more donations we receive, we become eligible for bonus cash grants! Find out more about #NTXGivingDay here: https://www.northtexasgivingday.org

Thank you for helping CCA send more children to Retreat and help more families travel to quality medical care. 








Monday, September 14, 2015

Ask the Doctor: 3D Ears

Today, CCA launches our new monthly blog series called, "Ask the Doctor." You can submit your questions to Annie Reeves (areeves@ccakids.com) and we will ask Dr. Earl Gage of Kids' Plastic Surgery in St. Louis to answer them. Thanks Dr. Gage for helping spread information and resources for our cranio families! The first question came from on of our CCA Teens.

Ask The Doctor

Earl Gage, MD

Question: Where do things stand with using 3-D printed ears for humans?  Who is doing it?   What are they made of?  How close are they to printing scaffolding for actual cartilage and being able to 3-D print 'real' ears?

Answer:  There is no doubt that 3D printing is an exciting new technology that has obvious applications in plastic surgery.  In ear reconstruction, 3D printing can already be used to create a mirror-image model of a child’s normal ear to help in fashioning an ideal removable prosthetic (or artificial ear) that can be worn. These same 3D mirror-image models can also be used in the operating room by reconstructive surgeons as a type of template to help build a new ear out of cartilage that is a “good match.” One company I am aware of (Medical Modeling - VSP Reconstruction) can also now create custom cutting templates and assembly jigs based on 3D models to help the surgeon precisely cut and fabricate an ear framework made from the child’s rib cartilage. These cutting templates and jigs may help make ear reconstruction more reproducible and more accurate, potentially improving results.

While most 3D printing currently involves using plastic, metal or other non-living materials, researchers envision the future possibility of printing living tissue and perhaps even whole transplantable organs such as livers and kidneys. Though experts agree that printing a complex organ is many years away, applying 3D bioprinting to ear reconstruction may come sooner.  For instance, researchers at Cornell University (Bonassar Research Group) have successfully bioprinted ear frameworks using collagen hydrogels infused with cartilage cells (chondrocytes) from cows.  Their early results reported in 2013 suggest that these frameworks, when implanted in lab animals, maintain their shape and size over time. To my eye, the level of detail in their frameworks still needs improving, but their results are encouraging. They hope to accomplish the same results in the near future using human cartilage cells.
Another group from Korea (Jung-Seob Lee et al) has printed ear frameworks using poly-caprolactone and hydrogel infused with human cartilage and fat cells cultured from human adipose derived stem cells. Though their frameworks were grown and cultivated in an incubator (not implanted), they showed it is feasible to build a complex hydrogel framework and coax human cells to grow in it. 

To date, no bioprinted, living tissue ear frameworks have been reliably and successfully implanted in humans. Most ear reconstruction surgeons feel that the “gold standard” in ear reconstruction remains fabrication of an ear using a child’s own rib cartilage.

Based on the literature I have seen, I am optimistic that the advent of 3-D printing “real ears” may not be that far away. However, there are still significant challenges to overcome. First, bio-printed frameworks still don’t have the same level of detail as a “real” ear. Secondly, it’s also not enough for a biologically printed ear to just look like an ear. It also needs to have the right rigidity and durability once implanted so it will last and yet be flexible enough so that it won’t break. In addition, it needs to be composed of living human tissue so it can grow and repair when injured and resist infection. Beyond the challenges in creating the framework itself, the skin covering over the framework may not be hospitable to a bio-printed ear if it’s tight or scarred. When the skin covering is too tight, it can cause the cartilage to reabsorb or lose its detail over time. And so researchers still need to figure out how to create the most favorable skin covering for framework insertion. The living ear framework will also need a blood supply so that it will live once inserted.


Sorting out these challenges (and others not yet identified) will certainly take time, but there is no question that 3D printing holds exciting potential for the future of ear reconstruction. And hopefully that future is not too distant.

Wednesday, September 9, 2015

11 Ways to Nurture Family Ties through Technology

We live in a world full of distractions that can make it difficult to foster and strengthen bonds between family members. Unlimited access to the Internet, satellite television, flashy gaming devices, and unlimited streaming services can easily interfere with our relationships. Lately, people have begun to notice how our beloved handheld devices, which connect to a world of social media and gaming apps with a simple tap of a finger, are heavily influencing our families.

It’s easy to see all the negative side effects of constant updates, electronic whirring, and metallic pinging. However, all is not lost. Technology has the potential to be a wonderful tool for this generation. If used correctly, it can bring families together in ways that were unimaginable in prior years.

Promoting Family Unity In The Digital Age

Granted, many of our children, friends, and family members are proud owners of cell phones, tablets, computers, and gaming systems at levels never seen before. While it is easy to complain about the knot of charge cords and adaptors crowding our countertops, we need to take a step back and look for the positive ways this technology invasion can improve our family life.

Listed below are 11 ways to foster family relationships by using technology:
  1. Friend family members on social media and make it a point to reach out to each other on a frequent basis. Don’t wait for birthdays or anniversaries to drop a quick hello. Take a few minutes and send a quick note when you think of them or see a meme that reminds you of him or her. 
  2. Look for apps and online services to help manage the family. Take advantage of online banking, calendar apps, meal planning, couponing sites, and more! Save yourself time and money by simplifying your amount of paperwork and juggling of schedules to make technology work for you.
  3. Have fun! Send a short, funny video of you telling a joke or challenge your child to a mean game of TriviaCrack. Face-to-face conversations are important, but meeting a teen on his or her “home turf” can yield authentic ways to interact. 
  4. Text and message updates and carpool schedules. One of the luxuries of children toting cell phones is that they are accessible anyplace, anytime. Simply have your child check in their whereabouts or send an update of their activities to keep everyone in the loop. This will keep family schedules running smoothly and offer parents peace of mind when a child is out late.
  5. Get Grandpa and Grandma connected! Include senior family members in on the fun and introduce them to technology. This act will promote interaction and bridge the generation gap. Taking a few minutes to teach seniors how to video chat or send a text message will ensure that everyone is connected.
  6. Develop a technology plan or contract for the family. Sit down as a family and design rules, expectations, and consequences in regards to technology. Be specific and write them down! Spending a little bit of time on developing an agreement will help prevent future problems, because everyone will be on the same page.
  7. Power down devices during family functions and at night. By creating tech-free zones, family members can focus on dinner or activities. It will also allow children, and even parents, a break from their electronics and offer face-to-face chances to bond.
  8. Learn new skills or hobbies together. Whether you are training to do a color run or mastering the art of French cooking, the Internet is full of endless ideas and tutorials. Take advantage of Pinterest or Instructables for fun activities or craft ideas to inspire kids and adults!
  9. Avoid homework meltdowns by using the Internet as a resource. Turn to the world wide web for tutorials, study guides, educational games, and clarification for difficult topics. With a little help from YouTube or Khan Academy, you might be able to conquer exponents and Newton’s Third Law with a minimal amount of tears.
  10. Strive to teach children social media etiquette. We live in a society that is driven by technology and our online presence is important. Given that most three year olds are actively surfing the net, we should not delay these conversations. At first keep topics simple and build on them as kids age to cover dicey topics like sexting or cyberbullying.
  11. Consider monitoring a child’s technology activityMany children and teens are reluctant to inform parents about things they encounter online. In fact, 70 percent of teenagers regularly hide their activity from adults. Know a child’s contacts, apps, and check in to keep tabs of what they are encountering online. Talk with your child to determine if a tracking app is a tool you want to employ. 


Charging Ahead… Using Technology’s Power For Good

This fascination with technology can easily lead us to distracted living, but with intentional choices we can reconstruct family communications, interactions, and bonding. Parents need to challenge ourselves to harness technology to benefit our way of life
and promote our family values.

What is one way you use technology to keep your family together?

Today's guest post is from Amy K. WilliamsAmy K. Williams is mother of two and a former social worker, specializing in teen behavioral issues. Parenting is her passion and she is especially involved in spreading the word about positive parenting techniques.

Tuesday, September 8, 2015

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.

Friday, September 4, 2015

Peppy Pals wish CCAKids a Happy #CAM2015

We are so excited to announce that the Peppy Pals team - a digital game studio - based all the way in Sweden has pitched in to celebrate kindness with us during #CraniofacialAcceptanceMonth!

Rosie Linder, Founder & CEO, and her team generously made this fun video for us.



We think that CCA parents will love the Peppy Pals game. We believe Peppy Pals is an important resource for our families, as a tool to help young children manage the difficult emotions of being born with a facial difference. By understanding one's own emotions and recognizing them in others, the whole family benefits and does a better job navigating bullying, unkindness, fear, anxiety, and anger. Furthermore, Peppy Pals' approach feels nurturing and intuitive, which is a positive way to promote kindness and empathy in children. As Rosie says, “We want to help future generations develop their emotional intelligence in an entertaining way. It´s a great way to reduce bullying and becoming excluded from the world."

From The Toy Blog:
One of the most important social skills we must teach our children is empathy. Empathy is the capacity to put oneself in another person´s shoes and value what they have to say and feel. Its part of what is called emotional intelligence, something that allows us to create healthy relationships, good communication skills and a collective conscious. At The Toy Blog, we´ve written articles such as Cultivating Empathy and How to Teach them what Love Means but today we want to offer you a tool that will help your children learn empathy while they play. ThePeppy Pals Farm and Peppy Pals Beach apps are games that allow them to recognize other people´s emotions without the need to win. 
The toy market is saturated with apps for children that have been created to entertain. Others, such as Taking Care of Nenuco, are based on teaching children to identify feelings while others are there to help them learn. Such is the case of Peppy Pals, a Swedish brand of products that help kids improve their emotional intelligence. Something that Fluff, whom we had the pleasure of interviewing, is also working on. 
Peppy Pals Farm and Peppy Pals Beach are designed for children between 2 and 6 years old. While they play they will have to help these adorable animals in different situations. Each pet has its own personality and is exposed to different circumstances, which the little ones will immediately identify with. 
Both games are very intuitive. They lack text and language so children, just by observing, can understand how the characters behave and what they need to do to interact with them. There is no wrong or right answer nor does the concept of Game Over exist.

Read more about the game here and check out the adorable trailer for Peppy Pals Beach below.



***
For the Alums and Adults who are interested in technology, entrepreneurship, and working in the tech field, there's more from the Peppy Pals team for you! Rosie Linder has a great video series, produced with Amazon, talking about her work and mission. We think you'll enjoy these videos, too!



Thank you Peppy Pals for celebrating #CAM2015 with us!

Thursday, September 3, 2015

Let's Send More Kids to Retreat through FirstGiving


One super simple way you can help CCA raise funds to send kids to surgery and host the Annual Family Retreat & Educational Symposium is by starting a FirstGiving page for CCA.

FirstGiving is a great way to involve new people in helping CCA and it comes at a great time, as part of our Matching Challenge Grant. For every dollar we raise from new donors, it will be matched 100% up to $25,000!

So if you start a FirstGiving page and 25 friends donate $5 each, you've raised $125 which turns into $250 for CCA because of the Matching Grant.

This is a fun, easy way to involve your classroom or group in #CraniofacialAcceptanceMonth.

Let us know if you want to pitch in and we'll help tell your story like Fred's success below (also on page 24 of the Current Newsletter).

We are truly and deeply grateful to 
everyone who supports CCA. This Thursday and 
every #ThankfulThursday, 
we appreciate your generosity and kindness. 


Wednesday, September 2, 2015

#CAM2015 is Making National News!

Craniofacial Acceptance Month is making national news!

Today we have two national news features to share with you. 
First, from USA Today, is the awesome video they produced of our #CCARetreat2015.



Second, we love that The Huffington Post ran a story called "September Is Craniofacial Awareness/Acceptance Month, and Here's Why It Should Matter to You." Wow! This moving personal essay from Cranio Mom Kathy poignantly hits home and explains why awareness matters both early on, when obtaining accurate and timely medical treatment is critical, but also throughout our Cranio Kids' lives as they enter the world and face the challenges of looking "different."

We agree, #CAM2015 matters and we're so glad that these two media outlets are spreading acceptance and kindness.