Sunday, March 31, 2019

Why Kindness Matters...




By Christine Clinton 

After reading the book "Wonder" I realized for the first time that I was not alone in being bullied. In fact, Auggie and I shared nearly the exact same experience. Like Auggie, I had my own Julian when I was mainstreamed into the fourth grade. Helen was my Julian. She made sure to tell all of the other children in the fourth-grade class, besides my sister and my best friend Elizabeth, not to talk to me or have anything to do with me, because I looked physically different. She made sure to make my life miserable in school. 



After that experience as a child, I want to be able to help the youth of today realize that people who are physically different are people too. When I was younger, I was bullied so much in school. I was going to the special school for five years, and while I felt like I didn't need to be there necessarily, I felt like I belonged there. Then, I was mainstreamed into my sister's school, and went into the fifth grade. Everyone in the fifth grade class, the students and the teacher, loved me. However, because I wasn't properly taught in the special school, and I was so far behind, I had to be put back into the fourth grade class, which was my sister's class. That is when everything started for me. One girl didn't like me because I was physically different, and she told all of the other students in the fourth grade class, except for my sister and my best friend Elizabeth to have nothing to do with me because of my physical differences.  Because of her, she made my life miserable in school.


Adults haven't always been so kind to me either, which is sad, because you would think that adults would know better and do better. Unfortunately, some adults need to be educated about kindness too. Kindness is so very important, and kindness matters...All the time.

At the end of the day, everyone, no matter their age, needs to find ways to choose kind. 

Wednesday, March 27, 2019

#WonderWednesday: Melissa Brings Wonder Story to College Students




    Melissa McGowan of Canonsburg, Pennsylvania went to West Liberty University in January to speak to future physical education teachers. The focus of the course for these future teachers was on including adaptive athletics into the physical education class planning. Melissa shared in order to provide a picture of how to best approach inclusion of the whole child or student in the classroom. She used her experience as a mother to Abigail, her daughter born with Pfeiffer syndrome. Melissa spoke about creating a positive environment for all students. Finally, she asked the students to discuss how they would handle differences of all kinds in their future classrooms.

    The physical education professor at West Liberty University said that Melissa created a "Clear presentation, including images shown on her slideshow and through her personal storytelling."

    "Melissa was an amazing representative of CCA. She was knowledgeable, passionate, and students could easily relate to her. She was super organized and made the information easy to understand. Her main message of seeing the child--and not just seeing the label or diagnosis--was clear and convincing. We were so grateful that Melissa came and shared so much with us!"


    Thank you Melissa for sharing your story with these college students.

Thursday, March 21, 2019

Participants Needed for Goldenhar Syndrome Research Study at Baylor University



Please help Baylor University College of Medicine and Texas Children's Hospital with their study on the genetic origins of Goldenhar syndrome. Richard Alan Lewis, M.D., M.S. needs your help to keep this study alive. Blood samples and a medical history are required of you. Here is more information about what Dr. Lewis hopes to gain through this research. 



"In the past two years, we at Baylor College of Medicine and Texas Children's Hospital have begun a genetic research program to look for the genetic cause(s) of Goldenhar Syndrome (also variously called Hemifacial Microsomia and Facio-Auriculo-Vertebral Spectrum). You may be aware that very little is known about the genetic explanation for these rare disorders, despite their variable effects on the eye, the ear, the face, the limbs and skeleton, and occasionally the kidney, among others. Also, these conditions vary widely from one family to another, so we expect that there is more than one genetic explanation for the same "diagnosis”, thus making the task of unraveling the true explanation(s) in any one family considerably more challenging! Many families have already had conventional genetic testing, which usually yields almost no useful information.

As part of The Center for Mendelian Genomics at Baylor College of Medicine, I am pursuing the genetic explanation(s) for the Goldenhar Syndrome and related conditions.

Since you as parents have an essential role in caring for, monitoring, and guiding the education of these children and young adults, I would appreciate most sincerely your joining us in this effort. Without your dedication and willingness, we cannot achieve the understanding that both the families and many scientists and physicians have wondered about for decades! There is no cost to any family for the detailed genetic analyses that will be done.

If you are interested in helping your child and in joining this research program, please contact me. 
Please call my academic office at (713) 798-3030 or email me at rlewis@bcm.edu. 

If I am not in the office, please leave a voice mail with your name and a phone number for me to return your call. Also, please mention Goldenhar Syndrome or Hemifacial Microsomia in the message. I will call back and explain the details!

Thank you! Our team here is most eager to proceed with this unique and exceptionally important research program!"

Wednesday, March 20, 2019

Safe Swimming for Kids with Autism

Spring Break is here and Summer is just around the corner! With outdoor fun on the horizon - and a HUGE pool party at this year's Annual Retreat in Scottsdale, AZ- we wanted to bring you information about swimming safety. Our guest blogger, Angela Tollersons, tailored this article to families who have children with autism. 

Did you know that some people in our CCA community also have autism? If so, these tips are especially important to check out. We welcome these suggestions and hope you can incorporate them into your fun, spring and summer plans. 

Next month, April, is Autism Awareness Month. 

How to Keep Swimming Safe for Kids with Autism

The benefits of swimming for children with autism are numerous. Swimming can improve your child’s cognitive function, provide a positive social outlet, and get your child excited about physical activity. And since drowning accidents are extremely prevalent for people with autism, strong swimming skills can prove to be a powerful tool for keeping your child safe for life.

Build a Foundation

It’s important to make your child’s first swimming experience a fun and relaxing one.

Take things slowly the first few times at the pool so she’s not overwhelmed and try to go to the pool when it’s quieter and bit less crowded than normal. This way she’ll have plenty of space to move around and get used to the water without distractions.

Teach her about pool safety by talking about how deep each part of the water is, showing her where the lifeguards are, and explaining to her that she should only be in the water if you or another designated adult is nearby.

Sign Your Child Up for Swim Classes

But not just any swim classes. An instructor who has been trained specifically for teaching special needs swimming classes will be the most effective teacher for your child. Some of these establishments even seek financial aid from third party organizations in an effort to make your child’s lessons more affordable.

Make a mental note of you and your child’s needs before checking out potential swimming instructors. Do you want him to learn with other children or alone? What learning methods suit him best? Keep these things in mind when choosing a program for your child.

Teach Swimming Safety and Water Safety Separately

A common practice for parents of children with special needs is to make it clear to their child that swimming safety and water safety are two completely separate things.

While your child might understand the importance of swimming safety, she’ll likely only associate those rules with being in the pool you frequent together. What she might not realize is that these rules apply to other bodies of water, too.

This is why you must talk to your child about water safety too. Make sure she knows that she should never go near water without an adult with her. While she already understands this rule for swimming pools and her swimming lessons, she should know that this also applies to other bodies of water like ponds, lakes, fountains, and even large puddles.

When it comes to teaching your child how to swim, safety is the number one priority. Make sure they know the rules before they ever dip a toe in the water and you’ll both benefit from the joy and relaxation safe swimming can bring.

Tuesday, March 19, 2019

30 Stories 30 Faces 30 Years: Charlene "Char" Smith, Executive Director Emeritus




When I first walked into the CCA office on June 1st 1989, I didn’t know what the word craniofacial meant or what the organization would accomplish. For 30 years I have been blessed to be a part of developing CCA and I believe what CCA is today and will continue to be in the future, is very clear.

We are a beacon guiding the way for individuals and families affected by facial differences.

We are SUPPORT. We are HOPE. We are EMPOWERMENT.

We are FAMILY. 


                          Charlene Smith, CCA Executive Director Emeritus

         


Charlene “Char” Smith is one of the founders of Children’s Craniofacial Association. Originally called International Craniofacial Foundation, she was asked to become part of the organization in June 1989. Just four months after Char joined CCA, we achieved our 501(c)3 status as a nonprofit. 

During the first year, Char threw her all into CCA, at one point running the organization out of her garage. Former board member, Tony Davis, comments about Char's work ethic during this time, "
CCA began in Char’s garage when we didn't have an office. Char worked very hard and it was nice to call and hear her dog barking in the background.  We were very grassroots." 

Paula Guzzo, former board member and CCA parent, seconds Tony's thoughts about Char and her ability to go all the way for CCA, "Char literally gave her time and talents freely during a period when the organization most likely would have folded. She was selfless. She had the fortitude to remain faithful to the vision of CCA during lean financial times."
Jesse Bridgin, Starfish Scholarship Award
Winner, CCA Retreat 2016

Along with Jill Patterson, CCA’s now-retired Development Director and Char’s friend, they forged relationships with donors, families, and most importantly Cher, our first spokesperson. In 1990, families went before Congress in Washington, D.C., and met other families affected by craniofacial conditions. Jill says, “And it was not just meeting the other families that made such an impact. It was walking around D.C. and on the mall – when people looked at us or stared, we were in a group. We were stronger together.” After seeing the impact that gathering children and families affected by facial differences had, Char helped shepherd in this now twenty-nine-year-old tradition we all fondly know as CCA's Annual Family Retreat. 

Char shared her talents with us for twenty-seven years fostering nearly three decades of success. What's her secret? Tony shares his opinion in saying, "
Char has a contagious laugh and a smile that makes you feel like you're getting a hug. Her dedication was not for a paycheck, but much more for her compassion and belief in our cause."

Char cites CCA's thirty-year success as an “incredible accomplishment” in the nonprofit world, possible only due to the families that have a “sense of pride and ownership in CCA." A big reason for its success is thanks to her ability to be kind to all, treating everyone with respect. "She's a caring friend who understands the need to make everyone feel they are the most important person to her and the organization," says Paula Guzzo. 

Annual Retreat and Educational Symposium 2018
(Back Row L-R) Jasmine Jackson, Christine Andler, Annie Reeves, Char Smith
(Middle Row L-R) Khadija Moten, Kara Jackman,
(Bottom Row, Center) Erica Mossholder


Jana Peace, former CCA staff member, learned how to enjoy work through the special atmosphere Char fostered in the office. Jana says, "Char had a way of making you feel at home and she immediately made you part of the community. She introduced me to families right away and before I knew it they were becoming a part of my family.  That’s how Char made you feel, like work was fun and everyone was working together to build a bond. We built a strong bond in the office. She always took interest in what you had to offer and what ideas you might have in making things better for the families. She also immersed herself in getting to know you as a person and your family."

The Birthday Club!
Char Smith and Brittany Morton
CCA Annual Retreat 2017

Char knew that the families were at the center of CCA. She approached each interaction in the best way she knew how, with a kind and gentle heart. Jana goes on to say, "What makes her so approachable is her humbleness. To know her gives you a collection of how many times she has learned to reach a family by simply walking along side them.  She has the ability to walk in someone else’s shoes and also lift them to reach their potential." 

Tony mentions another one of her qualities that undeniably lead her to foster the strong relationships she cultivated with friends, families, and donors. He says, "She's always the same whenever or wherever you see her. Ready to go and smiling all the way. For me, Char epitomizes what it means to give without expecting anything in return.”

Annie Reeves, CCA’s Program Director of fifteen years says, “Char is one of those people you just instantly fall in love with. I actually refer to her as my ‘Dallas Mom’ for so many reasons. She has the best sense of humor and can make you laugh like no other, a caring and giving heart, and has the ability to make you instantly feel loved and welcomed. She has taught me so much over the years and I’m still learning from her to this day. Without her sacrifices, hard work, and dedication to our amazing organization, CCA wouldn’t exist today. She is an inspiration to all and I have so much respect and love for this amazing woman.”
CCA Staff Christmas Party 2018


As Executive Director Emeritus, Char spent two years mentoring current Executive Director, Erica Mossholder. Erica says, “Char has a potent mixture of strength, intellect, and simplicity. She never makes things harder than they have to be. She is incredibly resourceful and smart. She is the kind of person that can figure out how to do anything and never saw herself above any task. There is no an air of pretentiousness in her, being around Char is both comforting and riotously fun. I don’t know how she had the time to do everything, but she never looked frazzled or stressed. She always made me feel like I was important and special, from her perfectly appointed luncheons with antique place settings to putting in hours on sweaty afternoons hauling boxes of books from her personal storage in her own vehicle to the CCA office... Char does it all, with a great joke and a smile. She’s a mentor and an inspiration to me.”

The Smiths, Char's Family and Grandkids


These days, Char enjoys spending time with her grandkids, traveling with her husband, and riding her bike along the neighborhood trailhead in Dallas, Texas just steps away from the CCA offices. She continues to attend Retreat and pops by the office from time-to-time to say "Hello," and often pitches in to help our amazing community continue to grow. 

Char's grandkids circa 2016.






Tuesday, March 12, 2019

30 Stories 30 Faces 30 Years: Avery and Carson Cooper


30 Stories: Avery "Honey Badger" Cooper

"Friendship with someone who 'gets it.' Honey Badger has many local friends, but loves her CCA friends, who've walked a similar path." Stephanie Cooper, Mom to Avery "Honey Badger" Cooper and Carson Cooper
Sibling duo, Avery and Carson Cooper, are a force to be reckoned with. Their connection is special and they spread kindness along with their family to all of West Michigan, across the USA, and to all their CCA friends. They are also incredibly successful and generous fundraisers, supporting the CCA Retreat and financial assistance program for families on medical travel. Just last year they netted over $5,000 for CCA! They are continually doing service projects and working hard to make the world a better place... not just for CCA, but for the many organizations they support! We are so proud of them! That's why we're happy to feature Avery - nicknamed "Honey Badger," who has Pfeiffer syndrome - and her SuperSib, Carson, as this month's anniversary story in our 30 Stories, 30 Faces, 30 Years series.

Monday, March 11, 2019

Scenes from a Hospital, A Poem


By Kara Jackman 

Editor's Note: I wrote a lot of poetry when I was in college. Recently, I went through a book of poems from that time. I was fearless in writing, much of it is okay, not great. Stumbling upon this one, I felt I should share it with you. I am not ready to share with The Mighty, but did want to share with you. Hope it resonates with you. 

The masks
monitors
sticky patches on my chest
tubing, nurses
doctors
All the props in place.
The doctors say their lines
Follow the script.
A kiss on the forehead from my mom,
she's playing her supporting role, too.
We've acted these scenes before.

Into the room
onto the stage
filled with a sticky sweet sterile smell

"Put me out, Put me out"
I scream silently.
Juliet must have felt the same.

The nurse takes my hand,
my mother's reluctant understudy.
It's not the same.

I'm slipping away.
The room, lights, swirl, dim
fade
    to
         black.

Scene.

Friday, March 8, 2019

Jaci Helps Veterans In Pennsylvania and CCA Kids Across the Country


Pictured from Left to Right Commander of the American Legion, Ted Smith, his wife, Megan Lynn Tecce, and her husband Ex-Commander of the American Legion, Gene Tecce

My Name is Jaci Samhammer! Besides being a CCA adult and volunteer, I am also a member of the American Legion Knowles Doyle Post 317 in Yardley, Pennsylvania where I am the Sergeant of Arms in the Legion Auxiliary. What we do is support veterans. My involvement with the Legion helps out by visiting local nursing homes that have vets staying there and sitting and talking with them. We bring them a goodie bags filled with fun stuff. They are so happy we are there for them. 
Around Christmastime, we do a giving tree. We have one representative from the Auxiliary go to the nursing home, get the list of vets, and what they want for Christmas. Then, we make cards and put them on the tree. People pick a name they want with their gift listed on the card. They bring the gift back by a certain time. It must be wrapped. After we sort them between the different nursing homes, and the representative delivers them, so they have something to open on Christmas day. 
Also, I am in charge of running the Americanism essay contest. We are sent the topic and rules from the department of the Auxiliary to send to local schools, so that students in Grades 3-12 can participate. Then after the deadline, we chose a winner. Only one winner is chosen from each grade level. Then, we go to the school and have an awards ceremony. An honor guard joins us and does a flag folding demonstration and explains what each fold means. They also play and explain "Taps," a bugle call played at dusk during flag ceremonies.
I also help out the Sons of the American Legion by selling Christmas trees. I am also the ticket taker at legion parties. Plus, I am the unofficial photographer. That’s a little bit of what I do in my home community, besides spreading awareness for all of us with CCA.



Wednesday, March 6, 2019

30 Stories 30 Faces 30 Years: Keegan and Brooke Strogatz



"CCA has meant so much to our family. When Keegan was born, I felt so alone and that no one else knew what I was going through. CCA has taught me strength and introduced me to families with the same struggles so that I know what to look forward to in our future. They have shown me love and compassion and we wouldn’t be here today with as much strength and knowledge without the help of CCA."
                                                                                                                       
                                Brooke Strogatz, mother to Keegan Strogratz

Keegan Strogatz lives in sunny, San Clemente, California with her Mom, Brooke. She loves swimming with her mother, petting dogs, and dancing to all types of music. She loves people. Keegan puts them at ease, by touching them, hoping to communicate, “it’s okay. We can be friends!” Keegan lives up to her name meaning “little fiery one” as she is sassy and filled with life.

Monday, March 4, 2019

Volunteer Opportunity: Camp Korey In Washington State

A great opportunity for our young adults looking to foster community in the facial difference community. If you live or plan to be  in the Mount Vernon area of Washington State, please check out Camp Korey. Each week, during their spring and summer camp programming, is dedicated to kids and their families affected by medical challenges. Week one (June 24-28, 2019) of the summer sessions is for kids born with cranioafacial conditions. If you are not able to attend retreat, are an adult, and can travel for this great resume boosting volunteer gig, then contact Paige Mackintosh, pmackintosh@campkorey.org for more information. 





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