Monday, January 30, 2017

Activity and Play Suggestions for the Visually Impaired

Our friends at Wooden Toy Shop in the United Kingdom shared another incredibly informative infographic for children whom are visually impaired. The Toy Shop suggests games, baking, and ways to adapt toys for kids with difficulty with their vision. Learn more about the Wooden Toy Shop by visiting their website. Many thanks to our friends from across the pond. 

Playtime with Blind and visually impaired children
Playtime with Blind and visually impaired children by Wooden Toy Shop

Thursday, January 26, 2017

Thankful Thursday: Thanks to Caregivers

Today on this Thankful Thursday, we would like to send a special shout out to all of our parents and caregivers. They are special people taking care of special children and adults. Parents, guardians, caregivers, and friends rise to the occasion each and every morning, working to help us succeed until the dark of night. 

Without you, we would never blossom into incredible, empathic human beings. We would never have the courage to face the difficult days ahead, nor revel in the small joys of life. Thank you for all that you do and all that you are. We are blessed to have you in our lives. 

Please know that though you sometimes may feel forgotten, you most assuredly, never are in our eyes. You are super heroes and cheerleaders. Keep up the great work. Thank you!

Wednesday, January 25, 2017

Wonder Wednesday: Wonder Lesson Plans and Resources Galore!

By Kara Jackman

Thank you to Carolyn Johnson, and her awesome daughter, and former CCA Kid, Jennifer. They have been producing the long-awaited Wonder lesson plans. Lesson 1 is complete and the rest will be available soon! Make sure you stay up to date on their availability by reading our monthly e-newsletter. You can request Lesson 1 now by contacting usTeachers and parents, you can read the book Wonder and turn it into an impactful, classroom experience. CCA offers lesson plans, great for groups and classes to get an even more in-depth understanding of the messages held in R.J. Palacio's New York Times Best Selling Novel.

Beyond the lesson plans, you can also purchase more fun Wonder-related products from our webstore. Go ahead and get a  CCA Choose Kind Challenge Poster, the latest CCA newsletter and brochure, a Choose Kind Flyer, and information on how to connect with a real-life Auggie Pullman, the protagonist of the book Wonder.
Contact Annie Reeves at [email protected] to get more detailed lessons plans. Check out additional free resources on the Wonder page of our website. 

Monday, January 23, 2017

A Case of the Lunchtime Blues: Advice for Parents and Kids

By Rasheera Dopson 

Growing up school was hard because I had a craniofacial condition. However the period that I always dreaded was not math or English, like some would think, but lunchtime. Now some of you may ask “why did you hate lunch?” Well to be completely honest, I hated lunchtime because it was the time during the school day where I felt different the most. 

We all know that the Lunch period is focused on two things and those are 1) Friends and 2) Food. However, what do you do when you have a child who is different? 

As an adult, I’m very confident in my difference. However, I was not always like that. I can now see, looking back, that my feelings of insecurity prevented me from missing out on some pretty awesome things about school. But that doesn’t have to be the case for your child. 

Children with craniofacial differences face many obstacles within school from academics to sociability. Nevertheless, by working together with your child you can strategize and have a successful school year. Here are a few things that will help if you find your child is suffering from the lunchtime blues. 
  1. Let your child know that it’s completely normal to feel different. Because let’s face it, kids with cranio-conditions are different. Nevertheless, remind them that difference does not mean less or even better, but that different is just different. Help them to embrace their difference and discover ways to accentuate their facial difference. For example I have hemi-facial-micro-somnia, which means my face is asymmetrical so growing up my mom would put my hair in these funky hair style that would draw attention away from my ear and face. Even in times where I had surgery and had to wear bandages around my head my mom was super cool and purchased fashionable scarfs and bandanas to match my outfits (thankfully bandanas were in back then lol. 
  2. Talk About it! One thing that helped in school a lot is when my mom sat with my counselors, teachers and explained to them the condition I had and why I looked the way I did. Sometimes my teachers would even let me talk to my class in the beginning of the year about my condition. This helped so much because it removed the barrier of assumption. In being proactive and answering question first it can cut down on teasing and uninformed statements. 
  3. Make room for transparency! This is so important because it gives your child a choice over their feelings. During adolescence, especially the early tween years your child can be going through a range of feelings and emotions and it can be quite difficult to decipher through. Adding a cranio-condition on top of that can amplify those feelings. Some days your child might express feelings of anger, or insecurity, or even jealousy. Talk about those feelings and where they come from and help them to confront them and compartmentalize.
  4. Get a game plan. If your child is new to school or program you need a game plan to help them adjust? Be real with them and prepare them. Create strategies that will help them immerse into the crowd or classroom instead of drawing away.  Encourage them to step out of their comfort zone and do something different. Joining a club or sport that is feasible is great way to meet new people. 
  5. Last, but certainly not least, always remind them that Lunch time and making friends can be hard... it’s a work in progress. However, I can confidently say being friendly and kind never goes wrong.  Sometimes in order to gain friends we have to be open up to others. Start by asking a question. Ask to borrow a pencil, bring up a new movie you just watched, or sing your favorite song. Find a commonality and work your way from there.  And what I have learned overtime is that true friends always stick around they won't see your difference. They will see you from the inside out!

As you go back to school and you begin to feel that pressure of trying to fit in and look like everyone else, dare your child to stand out and rock their difference. 

Thursday, January 19, 2017

Thankful Thursday: Wooddall Foundation

CCA is very thankful for the years of support that the Woodall Foundation has provided to us via their grant program. The Woodall foundation has supported CCA since 2009. Here we are with Adam Carriker, who dropped off this $2,500 check to us just before Christmas!

Wednesday, January 18, 2017

Wonder Wednesday: Ohio Middle School Reads 'Wonder'

'Wonder' is sweeping the nation! The latest group of students to read this book attend Ridge Middle School in Mentor, Ohio. Many schools are utilizing this book to teach acceptance, kindness, and how to deal with bullying. The original article appeared in The News-Herald. A portion of the text is reposted for you below. 

When Sam Drazin was 5, he had what was to be the first of seven reconstructive surgeries — five on his outer ears, and later one each on his jaw and nose.
“I know what it’s like to be judged,” he told a half gymnasium full of seventh and eighth graders at Ridge Middle School in Mentor. “We all have and face challenges every day. Some are visible, some are invisible. But experiences, good or bad, make us who we are. We are all born to stand out.”
Drazin, invited as a speaker for the school’s first “One Grade One Book” program, was born with Treacher Collins syndrome, a craniofacial anomaly and rare genetic condition that affects bone and tissue development. As a result, Drazin suffered from hearing loss; he now uses a bone conduction hearing aid to help him hear.
The main character of “Wonder,” the book by R.J. Palacio selected for the six-week program, is Auggie, a boy who, like Drazin, has Treacher Collins syndrome. 
To read the rest of the article go to the News-Herald website

Tuesday, January 17, 2017

A Beautiful Disaster

By Kristin Bartzokis

This blog was originally posted to the author's personal website, beautiful disaster. Kristin Bartzokis is an athlete, artist, and writer.  She was born with Treacher Collins syndrome and documents her life experiences in her blog Diary of a Beautiful Disaster.  Her first book, also titled Diary of a Beautiful Disaster, releases March 21, 2017.  You can preorder it here

This will be the most raw and vulnerable you’ll ever find me. It is also one of the hardest truths I will ever write. I don’t speak of it often but it controls my life more than I care to admit. I’ve tried many times to express this but I guess I wasn’t quite ready to let the world know the deepest part of me. It only makes me a sliver of who I am yet sometimes I feel it controls the reins.

Many would call me hard or stoic. I would concur. I’ve worked tirelessly over the years to learn how not to cry, to build a wall around my emotions, and to never expose my heart. It comes with the territory. I’m my own worst enemy. I’m the sole reason for my own emotional sculpture.

Growing up I believed that everything happened for a reason. God only gave people what He knew they could handle. The strong were thrown curveballs because they would be more apt to hit homeruns than strike out. I clung to those beliefs for as long as I could; I had to in order to stay sane through years of hospital visits. Eventually I came to determine that life consisted of moments of chance, coincidence, and pure luck. A more realistic approach to life said there was no such thing as fate or destiny. My Treacher Collins Syndrome came from a random genetic mutation: plain and simple. It wasn’t written in the stars. It wasn’t because God knew I’d value my strength above all else. It was random. It could’ve been you instead of me who was dealt this burden. Maybe you would’ve handled life differently. Who knows?

For the bulk of my existence, I felt like an unfinished painting that constantly needed tweaking. Each year I went to the reconstructive surgeon knowing he would find the next flaw to correct. Would it be my underdeveloped cheekbones again? Or my recessed jaw? Maybe my malformed ears? After years of being scrutinized, I began to see the flaws myself, flaws no one else noticed. I gazed into the mirror and saw the uneven shapes of my eyes, the asymmetry of my jaw, the barely noticeable depression on the tip of my nose, and the scars left behind as proof of my struggles. Though my reflection transformed over the years into something I quite adored, I always found new faults.
I never really minded the hand I was dealt. I’m proud of who I am and how I got here. I had a great childhood filled with amazing family and friends; I couldn’t have asked for better parents. I wasn’t bullied or afraid. I accomplished things that most could only imagine. I was athletic, creative, and intelligent. I lived abroad and traveled the world. I sometimes forgot I was any different than everyone else, and in retrospect I wasn’t.
A tiny slew of details, though, remind me that I’m unique. I’m 34 years old and have never been on a date, never been kissed, never had a boyfriend. As my friends get married and have kids, I’m still stuck in a moment that has passed. I never knew the feeling of being pursued by a flame in high school. I never experienced what one’s supposed to experience in her youth. No one asked me on a date. My dad didn’t have to clean his gun in front of a gawky teenage boy because my affections were never reciprocated. I never had anything to offer as my friends sat around talking girl talk. I couldn’t relate. I still can’t relate.

Sixteen years have passed since I graduated high school. Life can change in the blink of an eye, or in my case, stay annoyingly stagnant. I’m still weighed down by the emotions of a wrecked teenager trying to keep up with her peers. That largely causes me to guard my feelings, because if I expose them, I may fall apart.

I had plenty of crushes and always hoped that the current year would be “the year” for my first date, though I knew in the back of my mind that nothing would change. I never imagined my innocence would last into my thirties. I used to shake off the notion of being left behind with the excuse that I’d be having another surgery soon. No one need be around during that process except my family. Frankly, who would want to be? As the years turned, I ran out of excuses. I’m not ready. I’m studying abroad. I’m moving. I’m picky. I’m trying to find myself. Florida boys are idiots. I enjoy being alone. I’m meant to show the world that physical beauty isn’t synonymous with perfection…by dating a celebrity. (Ok, that last one was a stretch but a girl could hope.)

There are only two palpable reasons for my unconditional singleness these days: I lack self-esteem and I’m completely terrified.

Self-esteem fail #1- Slow Dances
In the course of my schooling, I was never asked to dance except by boys whom my friends made ask me. God bless my friends. They meant well, but I’d rather go seek shelter in the bathroom during slow songs than have someone coerced into dancing with me.

Self-esteem fail #2- When Someone Just Wants Anyone
There have been a couple guys in the past who have expressed interest in me, but as it turned out, their interests were more out of a desire for anyone and not me specifically. Thankfully, I found this out before I invested my dignity, but the walls around my heart grew increasingly in size and strength. I am neither cheap nor desperate. I will not be someone’s crutch valued only by his injury. When he heals, he loses the need for me. When the person he really wants to date becomes available, he’ll pull me from the game, as I was only a pinch hitter.

Self-esteem fail #3- Unwanted Stares
I understand. It’s common to gawk at something foreign. It’s a curiosity of the unknown, the fascination of the abomination. I’ve been stared at my entire life from people of all ages. It may enrage me, but I understand it. Staring is also a common form of flattery and flirting. I’m accustomed to having eyes on me for my looks, but I can’t decipher when those gazes mean more than just gawking at my uniqueness. I will never hold your gaze unless I’m trying to make you uncomfortable and look away first. (It’s a game I’ve always played with obnoxious children.) The truth is I’m uncomfortable being the sole focus of someone’s attention even if the gaze is full of adoration instead of curiosity.

Self-esteem fail #4- The Dreaded Online Dating
Match, eHarmony, OK Cupid, Plenty of Fish, Tinder- I created profiles for them all to appease certain people in my life, but never actually went out on any dates. Despite what these sites lead you to believe, online dating starts with physical attraction above all other forms of compatibility. If the opposite party likes your photo, they’ll message you, more often than not without viewing your profile. But even if they did, what’s the etiquette for stating your physical differences? If I deliberately call out my syndrome, I’m not staying true to myself- a self who, aside from the reminders found in mirrors, doesn’t feel any less normal. But if I don’t call it out, is it fair to a potential date? Would I want to be blindsided?
I’m pained by the vanity of online dating. During my secret attempts on these sites, other online daters I knew boasted about the number of (hot) guys that messaged them daily. I kept my mouth shut. My pool of options was more like a miniscule cesspool and needn’t be revealed. I could count my matches from all dating sites on one hand, and those questionable suitors didn’t even seem that interested in getting to know me.

Self-esteem fail #5- Generalization
Google Treacher Collins Syndrome and you’ll find photos of people who look eerily similar no matter their race, gender, or age. If you know the characteristics, it’s easy to discern who has TCS. Years ago, I volunteered at a camp for children with craniofacial anomalies and met other adults and children with the syndrome. Even in a place overrun by abnormality, people still questioned if we were related. It’s funny how a person can stand out in every single crowd yet is generalized by her flaws. No. Every person with Treacher Collins is not related. Stop generalizing. Stop diminishing each surgery I had by pointing out I have not succeeded in improving my traits. I have. I know I have. I don’t look like my younger self. I’m much happier with the person I am today than the person I was before each previous operation. I will gladly share my knowledge of and experience with TCS, but I don’t need to be reminded that my syndrome still reluctantly defines me.

Self-esteem fail #6- History and Hollywood

Have you ever noticed that whether in history or Hollywood, those with facial deformities (any deformities really) are cast as unsuitable to society? We’ve been left for dead at birth, accused of being cursed, and killed mercilessly all because fear suffocated instead of celebrated our uniqueness. That was our reality in the past, and most certainly still is in less civilized parts of the world.

Entertainment still brands us though. The Phantom (from Phantom of the Opera) hides behind a mask and lives in the shadows because the community lacks compassion for his facial deformity. Clarissa (from CW’s Reign) is disfigured after childbirth while an attempt to remove a facial birthmark fails. Though ordered to be killed, she, too, ends up living in the shadows with her face kept covered. Tell me, how am I supposed to feel about being physically different when my people have been portrayed in darkness instead of light, feared instead of revered? While Hollywood preaches acceptance in their own way (a deaf character in 7th Heaven, a visually impaired character in Pretty Little Liars, dwarfism in Game of Thrones), I’ve yet to feel a connection to one of these characters because they’re all otherwise beautiful actors. Until the Phantoms and Clarissas of the world aren’t portrayed as shameful secrets, I can’t feel completely whole. Perfect beauty is Hollywood’s reality, but reality isn’t perfectly beautiful.

Somewhere during the stretch of time, I stopped hoping that this would be ”the year.” I stopped believing in love. I stopped dreaming about a wedding. I gave up. By no means am I old, but with each passing year I drift further and further away from a reality that I struggle to believe exists. Because of this, I defer to fantasy. I easily lose myself in books and movies since successful storytellers seduce their audiences with their imaginations. I may not possess firsthand knowledge of nerves before a date, but I connect through an author’s emotional investment in her characters. Reading transports me to a world in which I am unfamiliar but desire to know. Perhaps that’s why I dream so vividly: my imagination draws from what another’s has concocted.

Since my experiences with dating rely solely on books and movies, I’m terrified of the day I may finally catch up. I’m 34, not 16. It’s pretty embarrassing to explain my lack of experience at this age. Do you remember how huge those butterflies were in your stomach before your first kiss, first date, first anything? Let me tell you, those butterflies grow at the same rate you do. And when you stop growing, they continue. The nerves feel more like bats in my stomach now, not butterflies.

Neither virtue nor morals have kept me on this path, though that would be a hell of a lot easier to admit to people. Fear has unintentionally cut me off from dating. I don’t make an effort. I simultaneously cower in terror and shame. I take the blame for my single life. If I can’t shake my past and tame my shame, I can’t build my future.

I didn’t write this for your pity or comments or concerns. This is who I am. I’m a 34 year old who feels more like a girl than a woman. I’m someone who, despite having all the strength in the world, found a kryptonite in dating. I’m someone who loathes being asked whether or not I’m in a relationship because I’ve grown annoyed with saying “no.” I’m someone who tires of being a bridesmaid without a chance of being a bride. I’m someone who fights for her cause yet lets her cause cripple her. I’m someone who finds joy in breaking barriers and has no intention of ceasing. I’m someone who can handle being told that I look beautiful, but not that I am beautiful. I’m someone who has confidence in what she sets out to do, but sometimes lacks confidence in who she is. I’m someone who has fallen prey to society’s demand for perfection yet understands that perfection is subjective. I’m someone who loves herself, but every once in a while wonders what life would be like as someone else. I’m someone who understands that her problems are petty compared to those of others. I’m someone with many layers that may never be revealed. I’m someone who will continue to be guarded despite this written confession.

I didn’t write this for your pity. I wrote this because I couldn’t imagine a more poignant way for me to help you understand who I am.  I am the girl with Treacher Collins syndrome, but more importantly I am Kristin.

Friday, January 13, 2017

CCA Family Spotlight: The Piacenzas

Meet Jayden & Sklyer

Sisters, Jayden and Skyler Piacenza, are always on the move! Jayden, affectionately known as JJ, is a 4th grade student at Carteret School in Bloomfield, NJ. Skyler is a big 1st grader at Watsessing School also in Bloomfield.

Karate is a passion for both girls. JJ is an orange belt, with a high kick to rival the Rockettes, and Skyler is a white belt, with a mean right punch! Watch out Power Rangers!

Girls with Santa this past Christmas

A born performer, Jayden enjoys dancing, singing, playing the keyboard and writing short stories. Skyler can always be found practicing her gymnastics, playing with Barbies or jetting around on her hoverboard.
Both girls enjoy spending time with their little brother, EJ; their dog, Cylla; and plenty of cousins!

They both have been bitten by the travel bug and love visiting new places. They enjoy going to theme parks to try the fastest rides, Florida for fun in the sun, and to the CCA family get togethers to see all the wonderful friends they have made!

JJ plans on becoming a surgeon one day and Skyler wants to be a teacher. As determined as these sisters are, we believe it will happen!

Thank you, Piacenzas, for sharing your story for our CCA Family Spotlight.
Super Sib Skyler at Retreat last June

Thursday, January 12, 2017

Thankful Thursday: Southwestern Community College Helps Staff Member with Apert Syndrome

Occupational Therapy Assistant Program students pictured here with
Casey Deakins (second from right) 

Casey Deakins is very thankful for the help and support she received from the Occupational Therapy students at Southwestern Community College whom made some clever adjustments to everyday office supplies she uses in her work as institutional development assistant. Deakins was born with Apert Syndrome which affects the growth and development of the hands and feet. The adjustments made by these students to these every day object make answering the phone, cutting vegetables, and stapling papers. Her gratitude moved her to throw the group of students a pizza party. The story that appears below was originally posted by Southwestern Community College. 

You can learn more about the school by heading over to their website

When you are around Casey Deakins, SCC’s institutional development assistant, you can’t help but be inspired and smile as she talks about overcoming the obstacles she’s faced in life.

Deakins was born with Apert Syndrome.

“I could be oh woe is me, Scarlett O’Hara over here, but I choose to be positive,” said Deakins. “I love what I do, and I take things as they come.”

Apert Syndrome is a condition that involves abnormal growth of the skull and face that is caused by premature fusion of certain sutures of the skull.

Other anomalies of the syndrome include webbed fingers and toes, as well as wide-set, bulging eyes that are tilted down at the side. Underdevelopment of the jaw usually causes problems with teeth alignment, and some are born with a cleft palate.

Apert Syndrome occurs in one out of every 160,000 to 200,000 births.

When Deakins realized she needed a modified staple remover, she asked Anna Walls, SCC’s occupational therapy assistant (OTA) program coordinator, for assistance.

Walls agreed and asked what else Deakins had difficulty doing.

The OTA students worked together to adapt a staple remover to maximize Deakins’ strength, putting her in the best ergonomic position.

The class then addressed other activities of daily living that Casey identified as difficult, including: answering the phone, cutting with scissors, drinking from a cup with one hand, and using a knife to cut vegetables.

Students worked with Casey on a trial run of various techniques and adaptive devices to increase her independence with the activities she had identified as difficult.

Once appropriate equipment was determined, Walls not only told her where to find the items - but that the OTA student club had paid for the order - telling Deakins Santa had come a little early this year.

“We were so happy to be able to work with Casey. She is such an inspiration to all of us,” said Walls. “Occupational therapy is about engaging people in the activities of life that are meaningful to them. Sometimes we focus on adapting the task by analyzing the skills a person has to use so that they can be independent.”

“We all have really enjoyed working with Casey. She has such a positive outlook and is so sweet,” said OTA student Krystan Inman.

Deakins had one more request of the OTA students and faculty, and that was to eat as much pizza as they could at the surprise party she gave them as a thank you for all they had done.

“It has been fantastic working with the students,” said Deakins. “A simple question I had turned into so much more.”

For more information about Apert Syndrome visit the CCA webpage devoted to this facial difference. 

Wednesday, January 11, 2017

Wonder Wednesday: Daily Wonder App for iPhone and Android

The Daily Wonder App is a free daily affirmation app that provides a precept for each day of the year celebrating goodness and strength. Based on the book 365 Days of Wonder by #1 New York Times bestselling author R. J. Palacio, there’s something for everyone here—drawn from popular songs, inscriptions on Egyptian tombstones, fortune cookies, and words of wisdom from such noteworthy people as Anne Frank, Martin Luther King Jr., Confucius, Mother Teresa, and Mahatma Gandhi, as well as everyday kids. 

The Daily Wonder App also makes it easy to share your favorite quotes with friends and family on Facebook, Instagram, Twitter, Pinterest, and Tumblr.

Special Features
   • Daily quotes (with access to previous day and next day) 
   • Short biography of the attributed 
   • Social sharing 
   • Calendar view 
   • Educational resources for Wonder 
   • Excerpts of books by #1 New York Times bestselling author R. J. Palacio 

Use the hashtag #choosekind when you post. Allow notifications and you will receive the ability to unlock additional quotes throughout the year. Other surprises may come your way, too.