#Greatest Hits: An Interview with Artist, Scott Clarke

To celebrate Craniofacial Awareness Month we will be featuring some of the posts that received the greatest number of hits over the last year.  In this post, we profiled artist and philanthropist, Scott Clarke. His creative designs and cartoons have helped CCA in big ways. A portion of the sales of his book, Cher-toons, will be donated to CCA. Please purchase a copy here

CCA: Who are your favorite artists? 

SC: MY FAVORITE ARTISTS? Hmmmmmm….I love sooooooo many, I always think everyone else’s work is better than mine and get discouraged! LOL, I don’t think I have a favorite artist … but many styles are inspiring to me!

CCA: What’s your favorite illustration you’re done?  
SC: It wasn’t my favorite because I liked the art so much but the one that made it to Cher’s Birthday Cake will always be my shining moment.

CCA: What inspires you?
SC: What inspires me is people who have nothing and still find the courage to get up every day and smile, Children with mental or physical challenges that move through life without despair and overcome. Elderly people with wisdom, wit and heart to share even after they’ve been brushed aside. I get inspired by those I want to help, even if they don’t need it.

CCA: What other hobbies do you have?
SC: My other hobbies are boring, I enjoy my gym time, I like yard work, I love music and love to sing (wish I could do it more often). I sang with a band years ago. My art keeps me very busy…not much time for other hobbies! LOL.

CCA:What does kindness mean to you?

SC: Kindness to me is making someone simply smile and expecting nothing in return.

CCA: What’s your motto?
SC: My motto, I have a few, but my favorite is “things can’t fall in to place if they don’t fall apart first”

CCA: Why did you agree to help CCA?
SC: I had never heard off CCA until I saw the connection Cher had with the organization. Once I learned of it I began to look at it more in depth. Having a young daughter myself my heart was hooked on the organization. My daughter had a cyst in her face as a child, nothing too severe, but I remember the difficult time she had and what she went thru before it was removed. Once again it wasn’t anything so severe that it was life altering but it brought me even closer to CCA and help me see just a small bit of what the parents and children must go through. I wanted to help, and the best way for me to help is to use my gifts (my art) to help with awareness and acceptance. Since I’ve begun sharing my talents with CCA I’ve grown to love these kids I’ve never met! 

CCA: Name 5 things you'd like to do before you die? 
SC: Hmmmm….I’d love to see a Broadway Show (no I’ve never seen one), I’d love to sing again, I’d love to get in to inspirational speaking (I survived when I don’t think I was supposed to, and I’d love to help others see they can too), I want an art degree (but I don’t feel like doing the required courses part), I use to say I WANT TO MEET CHER BEFORE I DIE, but NOW I think to myself she should wanna meet me! HAHA!

Thanks, Scott, for donating a portion of your sales from these awesome Cher-Toons books to CCA. Get your copy here.

3 Ways to Encounter A Child With Special Needs

By  Jeanine Ewing

I frequently end up in conversations with moms who have typical children, and we almost always end up on the topic of what-do-I-do-when-my-kid-sees-someone-different.  Unfortunately (or fortunately, as it may be), being a mom of two girls with very different special needs, I often get asked this question.  It’s valid and even really a necessary one for those who genuinely want their kids to be exposed to people of all varieties.  I admire those parents who strive to answer this question.  

The question remains, What do we do to make sure we value those people who sit on the fringe of society because of their differences?  How do we welcome them and move beyond mere tolerance or acceptance?  Let me offer you a few practical tips on how to encounter a child with special needs.  These are all written from my own experience as having children who are different.

1. Don’t be afraid to approach the parent first.

So many times I see a mom whisk her kid away in embarrassment upon quick appraisal of Sarah’s visible differences, and I wish that she would have had the gumption to simply approach me.  Yes, it takes courage.  Yes, it will lead you outside of what’s comfortable, but so what?  Is anything in life that’s worth much at all truly comfortable?

On the few occasions when a mom’s child makes a comment or asks a question about Sarah’s craniofacial condition and she actually walks over to talk to us, I am flabbergasted – in a good way, of course.  But I always welcome them with a smile.

You see, most of us caregiver-parents are more than happy to answer your questions.  Naturally, they should be thoughtful ones.  Nobody wants to hear something like, “May I ask you why your child has such a weird-looking face?”  But if it’s phrased with sincerity, we will almost always be open to discussing it with you, because it does two things – one, it educates you about our child’s differences (which eliminates or at least drastically reduces the fear factor), and two, it allows us to engage in meaningful conversation with each other.  You and I are both left enriched and better for it.

My first point is to merely ask.  Say to your child after an uncomfortable question or outburst, “Well, let’s ask that child’s mommy over there.”  And then approach us with a smile, saying something like, “Excuse me, but my child and I were wondering if it was okay to ask you a few questions about your daughter.  We notice she’s different, but we’d like to learn more about her.”

Bingo.

2. Use common courtesy.

This point should go without saying, but unfortunately it needs to be frequently reiterated.  When you see someone in a wheelchair, someone with leg braces, someone who drools or talks loudly, just smile and make eye contact.  Seriously, do you know how impressionable this is?  And how lacking?  I mean, all it takes is for you to acknowledge that my child is a valuable person.  You don’t need to immediately delve into a deep conversation about life and death (though that certainly may happen naturally on occasion).  All you need to do is smile, wave, say hello, and move along.  No harm, no foul.

What this does is model to your own children that people are people, regardless of differences.  It also may invite further conversation with your child in private about how some people are born to look differently than others, and this is a good thing.  I realize at a particular developmental age children all want to be the same, dress the same, act the same.  But instill in them the concept that different is good at a young age, and they will be all the better for it.

3. Get to know the family.

If you become closer to the family as a whole, you may be surprised to learn that they are typical in some ways.  Yes, their lives may revolve around changing dressings or cleaning medical equipment.  They may have myriad appointments and multiple therapy follow-ups, but they are still a family.  They laugh.  They enjoy fantastic moments of enlightenment, closeness, and joy.

If you are brave enough to get close to them, you may find a kinship or sense of camaraderie with their lives.  Families who have kids with special needs offer a unique perspective to the world – while very much mainstream in their interests and lifestyles (like going to work, cleaning house, cooking, etc), there is a rare depth to them that does not tend to exist in typical homes.  Get to know them.  Befriend them.  Don’t be afraid to get close to those who are caregivers.

Yes, suffering is uncomfortable.  To be faced with it on a daily basis can be excruciating.  I realize that our children’s visible differences are raw reminders that suffering exists and can be ugly and unbearable.  But don’t let that stop you from a potentially life-changing relationship with both the parents and children.  It’s likely to be a mutually beneficial situation.

Jeannie Ewing is a writer, speaker, and grief recovery coach.  She is the co-author of Navigating Deep Waters: Meditations for Caregivers.  Jeannie was featured on NPR’sWeekend Edition and Tony Agnesi’s radio show Finding God’s Grace.  For more information on her professional services, visit her websites lovealonecreates.com orfromgrief2grace.com. 

Text Copyright 2016 Jeannie Ewing, all rights reserved.

Image Copyright 2015 “Disability” by gmwolford on Pixabay and edited in Canva by Jeannie Ewing.

Differences Shouldn't Mean Social Isolation

September marks Craniofacial Awareness Month, and the  beginning of the school year for many families. This post from April 4, 2016, focuses on acceptance of differences at school for all kids, but especially for those with facial differences. 

Differences Shouldn’t Mean Social Isolation 

For elementary and middle school students such as Auggie, the main character from the best-selling novel, Wonder, the thought of going to school each morning fills them with dread and anxiety – not because of the classroom work, but because of the social environment.  

In the United States, young people spend half of their waking hours in school. Lunch and recess give students a way to break up the day, socialize and recharge before going back to class. But, for some students, especially students who may have differences or have fewer social skills than their peers, lunch and recess are hardly a time to unwind. It is a time to dread.

The social pressures of the playground and the lunch table combined with a students' social status redefined on today’s digital play ground, can make lunchtime more stressful than academic work itself.

How can we help a child or teen who doesn’t want to go to school because even lunch seems like misery

Parents can play an important role:   they can become advocates by bringing to their child's school a new focus on the issue of social isolation including the programs Beyond Differences offers.  School counselors, teachers, and administrators are all likely to be interested in this important and burgeoning crisis of adolescence.

Educators can also play an important role: teachers can and typically are "the wise ones" who brings Beyond Differences’ national awareness days - for example, the popular National No One Eats Alone Day -  to their students along with utilizing Beyond Differences’ teacher’s guides which offer programs and activities to help students become leaders

We now know that social isolation is often the precursor to bullying. Socially isolated students do not have anyone to sit with at lunch, no one to play with at recess, and often find themselves alone at a crucial time for adolescent social development.  According to a 2013 research study on children and social isolation, negative health consequences can be serious and include increased risk of heart disease, sleep disturbances and obesity

Socially isolated students also run higher risks of engaging in truancy, self-harm and community violence

Imagine a middle school with endless social opportunities for every child regardless of how a child looks, what they eat, or their family’s socio-economic status. Imagine one where students always have someone to sit with at lunch. One where no one was left out.  As ambitious as it seems, Beyond Differences is committed to empowering youth to end social isolation

Bring our next national awareness event -- Be The One Day -- to your child’s middle or elementary school on April 22, 2016.  Visit joinbetheone.org and see how exciting this special event can be for your child’s school.  We adults may not have had the benefit of Beyond Differences when we were growing up, but our children do and it’s time to take advantage of these student-led, original, and fun student programs to end social isolation today.

Ellia Shares Her Story

Last month, 8 year old Ellia Schultz from Ohio presented her story during Craniofacial Acceptance Month. She created this presentation almost completely by herself and then presented to her Diversity Club at school. We hope Ellia's presentation will inspire other CCA Kids to share their stories at school. With every presentation, school visit, or Skype session, we are widening the circle of acceptance and making the world a kinder place.

Ellia, we are so proud of you! Thank you for sharing your story with us, too!

Check out her awesome presentation via SlideShare here.

Ellia's Class Presentation from E_Mossholder

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.

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 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!

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.