Monday, September 20, 2021

Christine's Advice on Coping and Dealing with Grief and Mental Health

  By Christine Clinton



When I was a little girl growing up, the thought about losing a parent, or a loved one, never really crossed my mind. When I was six years old, my grandfather passed away; but I never understood the true meaning of death, or grief. Then, when I was twelve years old, my great-grandmother passed away. As I got older, I understood a lot more about death, and grieving the loss of a loved one. When I was 21, my grandmother passed away, and being in my early 20’s, I grieved my grandmother a little more than I did my grandfather, and my great-grandmother, because I was closer to my grandmother, and older. I have experienced the death of so many other loved ones in my life, and while I have experienced grief with each of the losses, the death of my father has been the worst for me. My dad passed away on May 25th, 2016. I had turned 40 years old in January of that year, and I had always thought that I would have my parents with me forever, although I knew death is inevitable. While my dad and I didn’t always get along, or see eye-to-eye, we both knew that we loved each other, and that was so important.

My dad always put his family first. His greatest joy was to see his family happy. He was always there for me, for every doctor’s appointment, hospitalization, and surgical procedure. Whenever I had any of my doctor’s appointments, he would make sure that he was home from work in enough time to take a shower. and get my mom and I to whatever appointments that I had. Whenever I was in the hospital, he would come home from work, come to see me in the hospital with my mom, and then leave to go home sometimes eleven o’clock or twelve o’clock at night. When I had my jaw surgery, he would bring my mom to my cousin’s house before he went to work. He would come to see me in the hospital after he got home from work, and then would go home with my mom late at night. He was always so happy, whenever I was happy. He never worried about himself, instead, he worried more about his family. My dad was a very hard worker, and while we had some struggles, we always made the best of whatever we had. He has three grandchildren, my nephews, who love and miss their grandfather very much.

Having a strong family connection and dynamic is so very important, but it is more important to someone like myself who has a facial difference. I don’t have a family of my own since I am not married, and I don’t have my own children. Having both of my parents when I was growing up, and as I got older, is so very important. I would love to have a family of my own, but I have struggled with that, and so I’ve come to accept my life as it is.

Since my dad’s passing, I have been trying to find some peace, and to come to terms with his death. Losing a loved one, or a parent, is never an easy task. Grief is so different, and each person grieves their own specific way. There shouldn’t be a timetable for grief, and no one should tell anyone how they should grieve, or for how long. I have a former acquaintance who told me that I shouldn’t be talking about my dad, or thinking about my dad; that I shouldn’t be grieving my dad. She said I had to live more of my life, and grieve my dad less. This hurt me so deeply. I’ve never forgotten that comment. We all grieve differently, and we all have different losses in our lives. No one should ever be made to feel like their grief, or their loss, doesn’t matter, or that they shouldn’t be feeling whatever they are feeling. We all have a right to our grief, and we all have a right to each experience a loss in our own very unique ways.

We could truly improve society so much if we removed the stigma around depression, grief, and especially mental health. It seems no one wants to talk about these things, because it is uncomfortable to talk about these things.

Fred Rogers from Mr. Rogers Neighborhood, has a very important quote. He has said, “whatever is mentionable, can be manageable.” He mainly talks about children talking to their parents, or a trusted adult about their emotions and feelings, or whatever the case might be; but it is also some very good advice for adults too. I think if more people knew more about depression, grief, and mental illness, and talked about it more, the folks dealing with it wouldn’t have to feel so alone with dealing with it.

We all need to be able to talk about how we feel. If we are able to talk about the things that are important to us, if we can make the things that are important to us mentionable, then we’ll be able to better manage our emotions and feelings. Adults, and children alike should have a trusted adult, or friend, that they can feel comfortable enough with being able to talk to; we all need someone in our lives who we can trust and turn to with our deepest feelings.

In conclusion, if we were all able to express our emotions and feelings, and be able to talk about our grief and our mental health with those whom we are able to trust, and if whatever we feel is mentionable, can be more manageable, we would be living in a much gentler, kinder, and loving society. Reach out to those who are struggling emotionally, or with their grief, and mental health. You would be very pleasantly surprised how much people will share with you, if only someone would listen to them.

Monday, September 6, 2021

Ask The Adaptive Athlete Returns With Rugby Player David Garcia



This story appeared in our 2020 CCA E-Network. David Garcia had just graduated from Brown University with a doctorate in chemistry. His next challenge was to start training for the 2024 Paralympic games as a rugby player. Read his story here reposted for your inspiration during CAM2021. 

 

“Adapt...persevere: because you are limitless.”


David Garcia, newly-minted doctor of chemistry from Brown University, is here to remind you that anything and everything is possible. He believes he holds the “blueprint of success for people with disabilities.” He challenges us and asks, “What is your excuse?”


David was born with Moebius syndrome, partial upper limbs, and no feet. He is the oldest of five born into a first-generation, Colombian immigrant family, living in New Jersey.  In his own words, nothing has ever held him back. In May 2020, he successfully defended his Ph.D. thesis in chemistry. Next up, he is training for the 2024 Paralympics. 


Life became easier for David once he accepted his body. There were moments of doubt, and plenty of questions from others like “what is wrong with your feet and hands?” David says, he “remembers the moment when the universe presented him with two options: to be consumed with self-pity or the second, to face my reality, accept my disability with all its challenges and refuse to be defeated.” Through the encouragement of lived experiences and a loving family he continues to preserve, to take every moment of adversity as an opportunity to grow. 


At age five, while surrounded by the bright lights and sharp tools in the operating room, enduring surgeries to improve the function of his eyes, mouth, and left hand, David realized that his “life was extraordinary” and he “had to be brave in the face of adversity.” 


He says, “Those surgeries, without a doubt, made me stronger and provided me with the courage to accept my reality.” 


As a child and teen, David says, “Every single step was a struggle. From the moment I could walk with my little prosthetics every step was a fight, a fight I learned to embrace.” He also struggled to accept his appearance. One day while putting on his prosthetics, he told himself “in order to play futbol, run, and have fun, I would have to put on my prosthetics everyday for the rest of my life.” While David has never looked back, each day was a struggle he had to overcome, mentally and physically. 


As early as elementary school and middle school David refused to be treated differently and rejected help from well-intentioned occupational and physical therapists. David says, “I taught myself to write with two hands, play fútbol with prosthetics, and perform in a band with soul.” During a trip to the beach as a child, he fondly remembers his mother telling him, “‘Davidcito, take off your prosthetics, enjoy your life, and jump into the water! Who cares if people stare at you?” Ultimately, she was right… “No one cares... but at that age it was difficult for me to share the same vision,” he recounts.


Now he can look back and realize these were seminal moments in his life. He muses, “I still feel insecure about my disability. Today, the difference is that I have learned to express self-love and embrace all my imperfections unapologetically. I have learned through self-reflection that my limb difference is not a weakness, but rather a shield that has given me the strength to forge my own path. I have learned that I am limitless.”


Today, David trains four to five times a week for one and half to two hours varying his workouts, alternating among the many muscle groups throughout the body with special attention to chest, biceps, triceps, shoulders, and abdominals. He begins with a lengthy warm up that includes stretching, 50 pushups, 10 pull ups, and 5 to 10 minutes of cardio. He concludes with more cardio and stretching after focusing on that day’s strength training.


For those interested in starting or continuing an exercise routine, David encourages that you define your goal by asking yourself “What am I looking to achieve? Then, once that is decided, you develop a fitness and nutritional plan that works for your body. The most important thing is to stick with your plan and see it through till you meet your goal.” 


Commitment to the cause is vital in this adaptive athlete’s opinion. A big piece of motivation may come from your past, remembering what you went through and overcame as a child. David says he was “empowered by my past successes, I never give up and [I] stay true to my vision. I remember the challenges I overcame, learning how to write with a pencil, learning how to shoot a basketball, learning how to ride a bike.” All of these successes were possible because he chose to adapt and persevere.

As you can see, in order to excel and work out at an elite level, a bulletproof mindset is required. David’s focus on how to adapt and preserve to meet his physical fitness goals also helped his mind become more nimble, too. Choosing to lift weights, play rugby, and just move is a powerful outlet for feelings of insecurity and powerlessness.  


“Exercising was always the key to keeping my stress and anxiety levels low. In fact, the less I exercised the more disordered my life was, and the more anxious I felt. So overall, exercise is crucial for maintaining my mind at equilibrium.” 


His next challenge will be training for the 2024 Paralympic Games as a wheelchair rugby player. He was recruited by his home country of Colombia to participate and compete for an olympic medal. David says he looks “forward to representing Colombia in the Paralympics and in the International World Cup tournaments during the next 4 years.” In between workouts, and rugby practice, David is pursuing motivational speaking and modeling in order to share his story with a broader audience. David also supports Positive Exposure, a New York-based nonprofit founded by award-winning photographer Rick Guidotti, that “is committed to creating opportunities to empower, support and embrace our disability community as well as all individuals and communities at risk of stigma, discrimination and exclusion.” As a member of the action committee, he is a living ambassador of their motto, “Change how you see, see how you change.”


Read more about David Garcia, his journey to acceptance, and why he wants to share his Moebius syndrome story with us on the blog at http://www.ccakidsblog.org/search?q=david+garcia (https://tinyurl.com/y9yqxly6)

Please follow David on Facebook, Instagram, and Youtube at @davidgarcialimitless. 


Saturday, August 21, 2021

Celebrate CAM2021 With These Picnic Hosting Tips

By Kara Jackman


In the summer newsletter we suggested some ways to throw the best Craniofacial Acceptance Month picnic ever. We hope this newsletter article help you as you plan for a fun day of family, friends, nd acceptance.


Believe it or not, as you’re soaking up the summer sun, we are preparing for September! Craniofacial Acceptance Month is just a couple months away. Planning a successful CAM picnic should start now. Here are some suggestions for planning and hosting a top-notch event to raise awareness and celebrate our craniofacial families.


Find A Cool Location & Create Your Guest List

Location location location! As important for a party as looking for a new home, we suggest you find a great space. Consider a local park, beach pavilion, or set up in your own backyard. After a year and some change inside, everyone wants to spread out in the sunshine, so be sure there are plenty of spots for all your guests. It is wise to base the amount of space you will need on the number of people you plan to invite.

State or city parks are great because many are free to use, and provide cool amenities like grills, picnic tables, pavilions, and bathrooms. A playground for the kids is always a crowd pleaser. Be sure to check with your local municipality or recreation department to make a reservation (if that is required and/or allowed), get a permit, and/or pay a reasonable deposit or fee. If it is first come, first serve, you may want a volunteer to go early in the day and stake out the location with some signage and decorations to hold your spot. If possible, include a map and detailed instructions on your invitation, and include a day-of contact number, so people can reach you if they are lost or have something come up.


Invite Your AND Our Friends - Publicizing Your Picnic

CCA is happy to share your picnic location and details with friends in your area. Our database is filled with families you may or may not know. Let us help invite people and publicize your picnic. We are here to help! For instance, if you require RSVPs, you can count on 85-90% of your “Yes” RSVPs to show up. If you do not require RSVPs, it will be harder to estimate a headcount, but the rule of thumb is that roughly only 30-50% of your total invite list will most likely be there on that beautiful day in September.
Pick A Day That Works For All

Some may say the date may be just as important as the location. Choose a day that avoids federal, local, and religious holidays. September is also back-to-school month, so be mindful of fall school events, too. For instance, CCA has selected September 11, 2021, as our region’s official picnic day. We chose this day as it works best for us. However, you can choose the date that works best for you and your community. Since our headquarters will be celebrating on a day of national remembrance for many across the country, we have decided to include an activity where we will write “thank you” notes for first responders, followed by a moment of silence for everyone who was impacted on September 11, 2001, 20 years ago. If your picnic falls on that date, we encourage you to do the same.
Forage for Food

Food - It can make or break a party! You have a few options here. For years, we had our picnickers bring their own brown bag lunches. It’s the easiest way to make sure everyone’s needs are accommodated, but you have to notify guests to BYOLunch on your invitation.

If you plan to provide food, first, thank you for your generosity! Make sure you have a wide variety of snacks from the savory to the sweet to keep your guests' mouths watering. Variety also allows your guests to decide what works best for their dietary needs and food sensitivities. (Just make sure you ask the location or look for signs that state what their policies are about bringing food to your picnic place! At the very least, you must assume you’re responsible for proper cleanup and disposal of all food and paper products.)

Another option is to have each family bring food in a potluck style. If you go this route, we suggest you create a Facebook event or Google form for your attendees to sign up for things to bring. You don’t want a party with 15 dips, and no chips! Don’t forget to have someone bring disposable cutlery, plates, and napkins!

Finally, many CCA families have had great luck contacting local eateries and supermarkets to see if they are willing to donate food from their stores. Bottled water is a popular donation item and will keep your guests hydrated on hot days. Many local BBQ restaurants are often amenable to this type of donation, and CCA is proud to have our local chain, Spring Creek Barbeque catering our picnic! (CCA can provide our tax exempt letter for charitable donations and sample request letters. Contact us for more information.)
Organize Entertainment & Activities

Entertainment is vital for a poppin’ party. From music and crafting to sports and games -- pick what works best for your family and friends. Wiffle ball, an acoustic concert, a talent show, cookie decorating, face painters, a DJ, or painting “Kindness Rocks” are fabulous ways to keep your guests engaged.

In past CAM picnics, friends invited special guests to their events. A local celebrity (sports figure, local TV news personality, high school mascot), or local government representative (mayor, councilman, state senator), first responders (firefighters, police, and EMTs) could really give your CAM picnic the draw it needs to make a bigger impact.

Invite the press using our CAM press release, and don’t be shy! We encourage you to tell your story. Posters filled with pictures and definitions created by your family about craniofacial conditions will showcase your journey. For an added bonus, share how CCA was able to help your family embrace the craniofacial journey.
Party Favors

CAM picnics intend to promote awareness and acceptance! Make sure your guests leave informed! Contact Annie Reeves for CCA brochures, signage, newsletters, and other printed material that we can mail to you, free of charge. Folks will be able to bring them home to peruse throughout the year and share with their own teachers and librarians. Craniofacial Acceptance Month does not end in September. If you leave an enduring impression with your picnic, these resources will increase compassion and reduce the amount of teasing and questions in the years to come.

You can also shop our webstore for low cost party favors like stickers, vinyls, pencils, and bookmarks with our #ChooseKind slogan on them to share with your guests, too. If you contact us directly, we always give CCA families a bulk discount. Purchase higher price items for silent auctions or raffles -- these might include our logo silicone glasses or New Balance pullover.

You’ve Got This!

Have a great time! Take as many photos as possible or consider asking a photographer to volunteer their time for the day! After the big event, please email Annie (areeves@ccakids.com) with a short description of the day’s events, exciting special guests, the yummy food you served, and a few (or all) photos you took, so we can publish them in our next E-Network newsletter, and watch our CCA family advocate acceptance in action.

Friday, August 20, 2021

#CAM2021 Is Just Around The Corner, Press Release Inside


Craniofacial Acceptance Month is just around the corner. We look forward to spreading the message of acceptance with the world each September. Please celebrate with us by contacting your local media (TV, Radio, newspaper, magazine, etc.) to share your story with the world. You can use this press release to get their attention. You can find a pdf version on our website at https://ccakids.org/acceptance-month.html. While you're there, discover others ways to raise acceptance and our theme "I Accept Me, I Accept You," our program for social media, and see if there is a picnic near you. 


FOR IMMEDIATE RELEASE
August 14, 2021
Erica Klauber
Children’s Craniofacial Association (214) 570-9099 eklauber@ccakids.com

Help Kids with Facial Differences Highlight Self-Acceptance and Embrace Differences this September


Dallas, TX -- Children's Craniofacial Association celebrates its 17th Annual Craniofacial Acceptance Month this September! This year, our theme is “I Accept Me; I Accept You,” which we hope raises awareness about the universal need for both self-acceptance and embracing others’ differences. This is important to us because we represent and serve children and adults with facial differences.

CCA hopes that you can help our kids spread these messages to a wider audience -- from the playground to the airwaves! We believe that sharing the story behind our differences is the first step toward acceptance and building empathy for one another.

We want to end discrimination and bullying based on visible differences through storytelling. We believe that facial equality is a human rights issue, akin to protecting the rights of people of all races, religions, ethnicities, sexual orientations, veteran statuses, and disabilities. We hope to accomplish this by embracing the concept, stated so well by one of our parents, Stephanie Cooper, “more shares leads to fewer stares.” To that end, please help us this month by setting aside a segment on your local radio or television news program for a story about a local child or adult with a facial difference. We can help connect you with a CCA speaker near you! Anyone who has ever been bullied or teased can find an empathetic a support network via CCA Kids.

To help spread information and acceptance, CCA offers teachers and educators free curriculum with stories about children with facial differences, interactive lesson plans that foster tolerance, conflict resolution, and social and emotional learning, and classroom speakers via our #ChooseKind initiative. Teachers or parents can request these materials and/or speakers online at our website, and requests are filled weekly. In additional to lesson plans and activities that educate others about differences, we also offer free copies of the book Wonder, to educators in grades 5-8. You can access these resources at: https://ccakids.org/choosekind-initiative-new/. To date, we have donated over 15,000 books to students across the country.

About Our Organization: Children's Craniofacial Association, a national 501(c)(3) nonprofit organization based in Dallas, Texas, and founded in 1989. We serve over 20,000 families per year and an additional 10,000 unaffected students in schools across the country. CCA's mission is empowering and giving hope to individuals and families affected by facial differences. CCA envisions a world where all people are accepted for who they are, not how they look. To learn more, visit http://www.ccakids.org.

Sunday, August 15, 2021

#ThankfulThursday: In Memory of Robert (Bob) Opdyke, Family Sent 100 Families To Retreat



Text from image above: My husband, Robert, and I  became involved with CCA, because of our now 45-year-old daughter, who was born with craniosynostosis and was a patient at CHOP (Children's Hospital of Philadelphia). A dear friend of mine, who worked at CHOP, held several events for the kids as well as attended the CCA Retreat each year. She asked us if we wanted to help assist families attend the Retreat, and we were  happy to help! The first time I attended a CCA Retreat, I was overwhelmed by all of the families present. I loved hearing about their unique experiences and challenges. I was able to see firsthand the impact on these kids, teens, adults, and their families. It was so important for all of us to be able to attend the Annual Family  Retreat. Over the last 20+ years, my husband and I have been blessed to send more than 100 families to the CCA Retreat! I'm so proud we were able to do this, because it is such an important event for the entire family! Sadly, my husband passed away in May of this year and we were all heartbroken. My family chose CCA as the suggested charitable donation in memory of Robert. It  warms our hearts to know that each donation honored the most generous, loving, kind man we have ever met. He would have been so touched and honored by all the contributions that were made by our family and friends, especially knowing how important this Retreat is to all of us! 

Thursday, August 12, 2021

CAM Picnics 2021




Get your Craniofacial Acceptance Month picnic on our calendar. We will update this information as more picnics are added. The more people who know, the more people will come to your September celebration. Join us in celebrating acceptance -- self acceptance, and acceptance of all people.

ʜᴏꜱᴛ ʏᴏᴜʀ ᴏᴡɴ ᴄʀᴀɴɪᴏꜰᴀᴄɪᴀʟ ᴀᴄᴄᴇᴘᴛᴀɴᴄᴇ ᴍᴏɴᴛʜ (ᴄᴀᴍ) ᴘɪᴄɴɪᴄ. ᴊᴏɪɴ ᴏʜɪᴏ, ᴍɪᴄʜɪɢᴀɴ, ɴᴏʀᴛʜ ᴄᴀʀᴏʟɪɴᴀ, ᴀɴᴅ ᴛᴇxᴀꜱ ɪɴ ᴄᴇʟᴇʙʀᴀᴛɪɴɢ ᴛʜɪꜱ ᴍᴏɴᴛʜ ᴏꜰ ᴀᴄᴄᴇᴘᴛᴀɴᴄᴇ ʀᴀɪꜱɪɴɢ, ꜰʀɪᴇɴᴅꜱ, ᴀɴᴅ ꜰᴜɴ.

ʟᴇᴛ ᴜꜱ ᴋɴᴏᴡ ᴛʜᴇ ᴅᴇᴛᴀɪʟꜱ ꜱᴏ ᴡᴇ ᴄᴀɴ ʜᴇʟᴘ ᴘʀᴏᴍᴏᴛᴇ ʏᴏᴜʀ ᴇᴠᴇɴᴛ.

ᴄᴏɴᴛᴀᴄᴛ ᴀɴɴɪᴇ ꜰᴏʀ ʙʀᴏᴄʜᴜʀᴇꜱ ᴀɴᴅ ᴏᴛʜᴇʀ ɪɴꜰᴏʀᴍᴀᴛɪᴏɴ

ꜰᴏʟʟᴏᴡ ᴜꜱ ᴏɴ ꜱᴏᴄɪᴀʟ ᴍᴇᴅɪᴀ ꜰᴏʀ ᴛɪᴘꜱ ᴀɴᴅ ᴛʀɪᴄᴋꜱ ᴛᴏ ʜᴇʟᴘ ʏᴏᴜ ʜᴏꜱᴛ ᴀ ᴍᴇᴍᴏʀᴀʙʟᴇ ᴇᴠᴇɴᴛ.

Learn more at... https://ccakids.org/acceptance-month.html


𝐌𝐈𝐂𝐇𝐈𝐆𝐀𝐍:⁣

𝐒𝐚𝐭𝐮𝐫𝐝𝐚𝐲, 𝐒𝐞𝐩𝐭𝐞𝐦𝐛𝐞𝐫 𝟏𝟏𝐭𝐡⁣
1:00pm-4:00pm⁣

Bicentennial Park, Ben Celani Pavilion⁣
35400 7 Mile Rd.⁣
Livonia, MI 48152⁣
𝘓𝘶𝘯𝘤𝘩 𝘸𝘪𝘭𝘭 𝘣𝘦 𝘱𝘳𝘰𝘷𝘪𝘥𝘦𝘥, 𝘱𝘭𝘦𝘢𝘴𝘦 𝘣𝘳𝘪𝘯𝘨 𝘺𝘰𝘶𝘳 𝘰𝘸𝘯 𝘥𝘳𝘪𝘯𝘬𝘴.⁣
𝐑𝐒𝐕𝐏 𝐛𝐲 𝐒𝐞𝐩𝐭𝐞𝐦𝐛𝐞𝐫 𝟒𝐭𝐡, to Kellie Dowd, kdowd22@gmail.com

𝐍𝐎𝐑𝐓𝐇 𝐂𝐀𝐑𝐎𝐋𝐈𝐍𝐀:⁣
𝐒𝐮𝐧𝐝𝐚𝐲, 𝐒𝐞𝐩𝐭𝐞𝐦𝐛𝐞𝐫 𝟏𝟐𝐭𝐡⁣
11:00am-2:00pm⁣

James L. Dorton Park⁣
5790 Poplar Tent Rd.⁣
Concord, NC 28027⁣
𝘗𝘭𝘦𝘢𝘴𝘦 𝘣𝘳𝘪𝘯𝘨 𝘺𝘰𝘶𝘳 𝘰𝘸𝘯 𝘭𝘶𝘯𝘤𝘩 𝘢𝘯𝘥 𝘥𝘳𝘪𝘯𝘬𝘴.⁣
𝐑𝐒𝐕𝐏 𝐛𝐲 𝐒𝐞𝐩𝐭𝐞𝐦𝐛𝐞𝐫 𝟑𝐫𝐝 to Jesanne Roden-Reynolds, wjrodenreynolds@gmail.com

𝐎𝐇𝐈𝐎:⁣
𝐒𝐮𝐧𝐝𝐚𝐲, 𝐒𝐞𝐩𝐭𝐞𝐦𝐛𝐞𝐫 𝟏𝟗𝐭𝐡⁣
10:30am-3:30pm⁣

Santa’s Hide-A-Way Hollow⁣
15400 Bundsyburg Rd.⁣, Middlefield, OH 44062⁣
(𝘛𝘩𝘦𝘳𝘦 𝘸𝘪𝘭𝘭 𝘣𝘦 𝘷𝘰𝘭𝘶𝘯𝘵𝘦𝘦𝘳𝘴 𝘵𝘰 𝘥𝘪𝘳𝘦𝘤𝘵 𝘱𝘢𝘳𝘬𝘪𝘯𝘨 𝘰𝘱𝘵𝘪𝘰𝘯𝘴. 𝘎𝘰𝘭𝘧 𝘤𝘢𝘳𝘵𝘴 𝘸𝘪𝘭𝘭 𝘣𝘦 𝘢𝘷𝘢𝘪𝘭𝘢𝘣𝘭𝘦 𝘵𝘰 𝘵𝘳𝘢𝘯𝘴𝘱𝘰𝘳𝘵 𝘺𝘰𝘶 𝘧𝘳𝘰𝘮 𝘵𝘩𝘦 𝘱𝘢𝘳𝘬𝘪𝘯𝘨 𝘢𝘳𝘦𝘢 𝘵𝘰 𝘛𝘩𝘦 𝘏𝘰𝘭𝘭𝘰𝘸 𝘢𝘯𝘥 𝘢𝘳𝘦 𝘢𝘷𝘢𝘪𝘭𝘢𝘣𝘭𝘦 𝘵𝘩𝘳𝘰𝘶𝘨𝘩𝘰𝘶𝘵 𝘺𝘰𝘶𝘳 𝘷𝘪𝘴𝘪𝘵 𝘵𝘰 𝘩𝘦𝘭𝘱 𝘺𝘰𝘶 𝘨𝘦𝘵 𝘢𝘳𝘰𝘶𝘯𝘥. 𝘖𝘶𝘳 𝘵𝘳𝘰𝘭𝘭𝘦𝘺 𝘪𝘴 𝘸𝘩𝘦𝘦𝘭𝘤𝘩𝘢𝘪𝘳 𝘢𝘤𝘤𝘦𝘴𝘴𝘪𝘣𝘭𝘦 𝘢𝘯𝘥 𝘸𝘪𝘭𝘭 𝘣𝘦 𝘢𝘷𝘢𝘪𝘭𝘢𝘣𝘭𝘦 𝘵𝘰 𝘵𝘳𝘢𝘯𝘴𝘱𝘰𝘳𝘵 𝘢𝘴 𝘸𝘦𝘭𝘭.)⁣
10:30AM: Arrival⁣
Noon-2:00PM: Lunch is served in the Pavilion⁣
3:30PM: Event Ends⁣
Bring your family and come visit Santa’s Elves, Reindeer and the Village of Shops! We will have a cookout lunch and some Christmas music! You can even sing-a-long! Bring a treat for the reindeer if you would like!⁣
𝐑𝐒𝐕𝐏 𝐛𝐲 𝐒𝐞𝐩𝐭𝐞𝐦𝐛𝐞𝐫 𝟑𝐫𝐝 to Elf Valerie, valhurstoh@gmail.com
𝘞𝘦 𝘭𝘰𝘰𝘬 𝘧𝘰𝘳𝘸𝘢𝘳𝘥 𝘵𝘰 𝘴𝘦𝘦𝘪𝘯𝘨 𝘺𝘰𝘶 𝘢𝘯𝘥 𝘔𝘦𝘳𝘳𝘺 𝘊𝘩𝘳𝘪𝘴𝘵𝘮𝘢𝘴!⁣
(𝘠𝘰𝘶 𝘤𝘢𝘯 𝘦𝘮𝘢𝘪𝘭 𝘈𝘯𝘯𝘪𝘦 𝘙𝘦𝘦𝘷𝘦𝘴 𝘧𝘰𝘳 𝘵𝘩𝘦 𝘪𝘯𝘷𝘪𝘵𝘢𝘵𝘪𝘰𝘯 𝘢𝘯𝘥 𝘥𝘳𝘪𝘷𝘪𝘯𝘨 𝘥𝘪𝘳𝘦𝘤𝘵𝘪𝘰𝘯𝘴. 𝘢𝘳𝘦𝘦𝘷𝘦𝘴@𝘤𝘤𝘢𝘬𝘪𝘥𝘴.𝘤𝘰𝘮)

Friday, August 6, 2021

A Plea From A Special Needs Mom Before The First Week of School



By Brittany Denison, CCA Mom to Michael

“Dear God, please make them be nice to him”

-- Julia Roberts, From the Major Motion Picture "Wonder," Released in 2017 (Lionsgate)


Hi friends! The first day of school is right around the corner and I wanted to make this post to help parents educate their children. This year Michael will start Kindergarten; I’m so excited, yet so scared. As he gets older he is starting to realize that he is different. He is also becoming more affected by the whispers and stares. Michael was born with a rare condition, Treacher Collins syndrome, exactly like the boy Auggie in the movie "Wonder." He looks very different, but he is mentally the exact same as all the other children (maybe even a bit smarter)!

I have a HUGE ask of all parents of school aged children!
Would you please take a moment to talk to your children before school starts next week?

  • Talk to them about using words like “different and unique” instead of “weird and scary”

  • Talk to them not only about being friendly and kind, but also about being a friend. 

  • Please don’t tell them not to stare! Instead let them know that if they are going to stare, it’s polite to also say “Hi ”

  • Teach them to stand up for the kid in the room who is being picked on, and to sit with the kid who is being excluded. 

  • MOST IMPORTANTLY: Model acceptance and kindness in the way you speak to other adults. This includes the cashier, the drive thru employee, and the guy who didn’t use his turn signal!

Also, if you see us out and about we love to answer questions about Michael’s condition and make new friends. If you take a step out of your comfort zone to talk to someone who you think is different, you may find out that you have more in common than you think! 

Please share the message if you feel inclined, we could all use a little extra kindness!
Thank you all from the bottom of my heart!

3 Dental Apps To Keep You Brushing and Calm Your Dental Fears





Are you having trouble remembering to brush your teeth? Are you or your child worried about what to expect at their next dentist appointment?


We have got you covered! There are a host of apps out there to help you with both your dental hygiene, and what to expect at the dentist. Our phones are always with us, and many of us are using them to remind us about little things throughout our days, from calendar notifications to when we take medication. They help us stay accountable. Why not include dental hygiene in the mix to stay on top of our oral health, too.  


Brush DJ 


The Brush DJ app syncs with your library of favorite tunes to keep you brushing for the recommended 2 minutes. The app developed by the British dental association is free, and links to Spotify, music on your device, Apple music, Deezer, or play a free track made available on the app. You can change the look and feel of the background too. Pick your favorite color. Start by flossing. The line of text suggests this before you press the start button on the app. The music will play for 2 minutes, and then stop for you to advance to the next quadrant of your mouth. Helpful reminders about where and how to brush run across the top of the screen. If you love music, this app is a great, free way to help you with your twice daily dental routine. You can find it in the Apple app store, or via Google Play.


Disney Magic Timer


Brush with Mickey, Minnie and your favorite Marvel super heroes on the Disney Magic Timer app. This app also has a two minute timer. As you brush you and your children will watch as a toothbrush slowly brushes away to reveal an image of all our favorite Disney friends. Once complete enjoy the fireworks and pop the sticker in your virtual sticker book to track your daily progress. There is also an AR feature which will allow users to take photos of the world around them with animated images. The app allows you to scan pediatric Oral B products featuring Disney characters and  Marvel action heroes on them for even more photo and video clip surprises. This app is free, available in the Apple App Store, and on Google Play, and helps track daily care for one or more family members. Get brushin’!


Crazy Shark Dentist 


Crazy Shark Dentist is perfect for the baby shark in your life that is worried about their next dental visit. The app simulates a visit to the dentist for a checkup, a filling, and simulated x-rays. It is a cool way to demonstrate to a child or person that might be anxious about the dentist how it will go. The equipment can be a bit difficult to decipher, but once you put the implements over the shark patient’s mouth it becomes clear. The dentist even checks your vital signs like heart beat and temperature. Audio and phone vibrations enhance the dentist visit experience as simulated on this app. Crazy Shark Dentist is available in Apple Apps. Another alternative available through Microsoft is Crazy Dentist Clinic.  Learn more and watch what the app does here on Youtube.





Sunday, August 1, 2021

Cleaning For Caregivers: Clean, Sanitize, All With Zero-Waste Supplies



Single-use cleaning products made of plastics and paper are constantly being disposed. They wreak havoc on our environment causing global warming, an increase in hurricanes, wild floods, and forest fires. 

Today, there are host of companies peddling products that are not only environmentally aware, but also recognize the impact on the human body.  Chemical sensitivity is a real thing, as real as climate change, and thankfully entrepreneurs found solutions for humans and our beautiful planet Earth.

Ok, but do these products work? More specifically will these eco-friendly alternatives sanitize surfaces? Will they keep our medically complex kids safe, too?  Products must be effective for our craniofacial community, where cleaning solutions and implements in our homes must not give off irritating fumes, yet be able to keep our homes squeaky clean to reduce the proliferation of bacteria and viruses. 

I'm skeptical, but that's just how I am wired. Let's see what's on the "zero-waste" market. From what I understand, these zero-waste products will not only clean up some serious messes, but also minimize their effect on the environment once it's time to dispose of them. 

A Game-Changing Single-Use Sponge

Photo Credit: Scrub & Throw

Perhaps the most intriguing among the cleaning products I learned about during my recent research was Scrub & Throw. I love single use products. As a medically-complex adult, you can pry my paper towels from my cold dead hands. When cleaning the kitchen, I fear rags because I feel as though I am dragging germs from one surface to the next. However, on some messes the paper towels just do not cut it. Dried on food, and tough hard water stains around the faucet rip paper towels. What to do? Enter the Scrub & Throw, the "first-ever zero waste scrub sponge made to be thrown away at the end of each day. It's cleaner and safer for our homes and our planet," says creator and entrepreneur, Catherine Burke.  It's a loofah for your kitchen, home, and bath fixtures. Catherine shares, "the sponge 
is 100% biodegradable/compostable. It is made from the loofah plant so its a renewable resource! They can be thrown away at the end of the day guilt free. It's a safer alternative for our homes and our planet." 


Luxurious, effective, and yet you can conveniently throw it away at the end of the day when you are done. No carrying over germs into the next day. Consumers reviewed the product and raved, 

"Game Changer"

Kitchen clean-up game changer. I can't believe I used to extend the life of my gross, old sponges in the microwave and dishwasher. Never again!


These sponges are sold in a 30-pack box for $14.99, or save and sign up for a subscription for

Photo Credit: Scrub & Throw
$11.99 per month. Your kids will love them because they expand when submerged in water. How fun! Learn more about the product and start scrubbing now on their website, Instagram, and Facebook pages. 

This Bleach Freak Needs An Alternative Cleanser

Photo Credit: Force of Nature

I have a confession to make....I love bleach. I really love it. It breaks down in water, and has some elements of the zero-waste cleaning swerve to it, but its so harsh smelling. The vapors can be dangerous if you inhale them in an enclosed space. Additionally, bleach can irritate people with compromised airways and sensitive skin. I am trying to slowly move away from dear friend, bleach. I've tried vinegar and like the effects. Yet, it's still smelly, but thankfully not as toxic. I needed something to kick it up a notch. After a smidge more research on the many zero waste blogs, I found this multi-surface cleaning solution that gave me pause: 
Force of Nature! What a great name, too. I'm in love! "Force of Nature is a cleaning gadget that actually uses electricity to convert tap water and a recyclable capsule into a powerful all-purpose cleaner and disinfectant," says the product website. 

How does it work and is it effective? 

The website goes on to explain, "each “Activator” capsule contains just salt, water, and vinegar, but has just as much germ-killing power as bleach, without any potentially harmful chemicals, fragrances, or irritants. Unlike some other “all-natural” cleansers on the market, Force of Nature kills 99.9% of germs and is on the EPA’s List N, the disinfectants approved for use against SARS-CoV-2, the cause of COVID-19, which is a big bonus."

Photo Credit: Force of Nature 

Yes, you read that right! It nukes COVID-19. Electrifying!

I'm an intense person, and this is an intense cleaner that I can get behind. The Starter Kit is priced reasonably at $65. Learn more about the starter kit and the product line  on the Force of Nature website


If the smell of vinegar is a turnoff, or reminds you of coloring Easter eggs, check out this quick and easy all-purpose cleaning recipe using castile soap. Castile soap is made with muddled olive oil and sodium hydroxide. It is a great option for folks with sensitive skin. It has no odor, but you can find varieties that have essential oils added like Dr. Bronner's brand. 

  • 1 Cup of Warm Water
  • 1 Tablespoon of Liquid Castile Soap Like Dr. Bronners (bought in bulk at Whole Foods)

There are a host of other zero-waste products that are eco-friendly and effective, too. Please read more about how to adopt a zero-waste lifestyle at these links below..

https://foodprint.org/blog/plastic-free-zero-waste-bloggers/
https://www.thegoodtrade.com/features/zero-waste-blogs
https://www.sustainablejungle.com/zero-waste/inspiring-zero-waste-blogs/ 


Sunday, July 18, 2021

Kid Speaker From The UK Shares His #ChooseKind Message With Skokie Students






Nicholas is a fine example of someone dedicating his life to make the world a kinder place. And when we say world, we mean it. Nicholas, born with congenital melanocytic nevus, lives in the United Kingdom and recently spoke to students at MCC Academy all the way in Skokie, Illinois after they read R.J. Palacio's novel "Wonder," about Auggie Pullman, a student who faces going to middle school after years of homeschooling.

Nik shared his life story about being born with a facial difference and how he embraces

kindness towards others. He encourages the students in his audience to do the same. As a member of CCA's speaker's bureau, he suggested ways to combat bullying and how he envisions a more inclusive world. A true renaissance man, Nik wanted to share his artwork with the class, but time did not permit. The artwork is a huge part of his message and advocacy raising. Images of his artwork are sprinkled throughout this blog post.

MCC Academy fifth grade teacher, Mrs. Rahman commented, "Nik was a wonderful and inspirational speaker. It was a pleasure to have him in class today. He did a wonderful job in sharing his personal story that tied with the novel "Wonder" we read in class. Nik beautifully shared a message with the class that they need to embrace everyone's differences and be kind."

Melanie Andrews, Nik's mother shared that the class of MCC Academy fifth graders were equally as kind and respectful, ""Nik had said that he felt so happy to answer such educated questions and they were asked so respectfully. Wow what a school. A role model school for us all."

Thanks to past opportunities to share his story and works of art, Nik won the Diana Award, given by the Princess Diana Award charity for acts of anti-bullying, and inclusion for all people in the United Kingdom. Nik advocates for people born with facial differences like himself. Nik was born with a a large congenital melanocytic nevus. His card initiative started with him taking his artworks and placing them on postcards for distribution to "to the public to advocate for kindness and equality. Nicholas considers Princess Diana his role model and lives by her quote ‘do what your heart tells you.’ His heart has encouraged him to spread the message, ‘even if you look different you should be proud of who you are,' says the Diana Award website.
Some of Nik's Artwork
Inspired by characters
from R.J.Palacio's "Wonder"



Thank you MCC Academy in Skokie, IL for choosing kind. Many thanks to Nik for continuing to spread this important message. Clearly a fun and informative time was had by all on this Friday in the first week of June as Nik bridged the gap across the pond!

Learn more about CCA's speaker's bureau program, or request a speaker for your school through our #ChooseKind Initiative on our website at.






Thursday, July 15, 2021

Two Northeast Tweens Tackle Tough Topics


During the spring, our friends stood up and stood out for causes that were close to their hearts. Madisyn Bowers took to the local news media, while Nova Cox was interviewed by Expeditionary Learning magazine. Let's read a bit more about these two shining stars and their causes. 

Western Pennsylvania native, Madisyn Bowers shared her courageous journey with local news station, KDKA. Madisyn wore the rigid external distractor (RED) device on camera while she enjoyed her moment in the sun with her Mom, Lisa, who explained more about Madisyn's condition and their crusade for kindness. Her guinea pigs made an appearance, too. Nana, Nancy was there to support Madisyn, too. Watch the KDKA news segment on the KDKA website

Western Massachusetts native, Nova Cox, shared their experience at school being a member of their school's
"Queer Club" as they put it. The Springfield Renaissance School rising seventh grader shared that the Gender and Sexuality Alliance was a place that he "can show my queer identity at school, bond with friends, and share stories and feelings with other kids. We meet once or twice a month; sometimes we talk about serious issues in the queer community and other times we just joke around." Nova and their Mom, Liz, also shared about the importance of pronouns and inclusion of diverse sexual identities in school's curriculum. Nova makes sure these things are part of conversations as a member of the EL Education Student Advisory Council. You can read the full article here on the Expeditionary Learning website.


CCA is very proud of both Madisyn and Nova for being upstanders in our CCA community and beyond. Keep up the great work.





Friday, June 25, 2021

Retreat Virtual Swag Bag

 What's in our swag bag this year? 

During an in-person retreat everyone gets a "Welcome Bag" with tons of treats from friends and sponsors. This year we did a virtual bag for you full of fun. 


Click and shop our amazing "swag bag" in this email with discounts and incentives. 

We hope you'll support these vendors, who've partnered with us!

CCA POP UP SHOP - GOOD THINGS ARE COMING!

This year has been tough, but we feel that good things are here and more are coming! Proclaim your positivity with these limited edition CCA items, designed by CCA Adult & Artist, Jennifer Johnson. SHOP

USBORNE BOOK DRIVE - FOR YOUR SUMMER READING & CCA CARE PACKAGES

CCA Mom, Maigan Baker, has helped us curate a wish list for our CCA Care Packages of Usborne books, plus you can stock up on books for your family, too! Shop for yourself here, or donate to our wish list

KENDRA SCOTT GIVES BACK

Once again, Kendra Scott is giving back 20% of sales this Friday and Saturday to CCA Kids! Plus, for every Watercolor Ari Heart necklace purchased, an extra $10 will be donated to CCA. 

CONNECTMED INTERNATIONAL CAMP COSMOS

ConnectMed’s Camp Cosmos Programs provide a supportive, inclusive and fun setting for children with craniofacial differences and their families to interact with, support, befriend and inspire each other, and to access guidance and resources from volunteer therapists, social workers, speech and language pathologists, and healthcare providers. Learn more here.

MYFACE - RACES FOR FACES

Each year, thousands of our myFace friends gather together - online and in person - to raise support and critical funding for the craniofacial community at Races for Faces.​

Historically held as an in-person 5k walk, Races for Faces went virtual in 2020 to help keep our communities safe.

And thanks to your overwhelming support for last year’s virtual event from across the country, Races for Faces will continue to include virtual participation in 2021 and beyond!

Thursday, June 24, 2021

#ThankfulThursday: Thank You To All Our #CCAVirtualRetreat2021 Sponsors





Please visit all of our sponsors in the Virtual Exhibit Hall

and thank them for supporting our Virtual Retreat 2021!

Thank you, ConnectMed International! 

ConnectMed (CMI) is a nonprofit that seeks to improve access to sustainable and full-service healthcare for children with craniofacial differences, especially those whose families struggle financially. Given evidence of the strong interconnectedness between the mind and body, CMI focuses on psychological, emotional, and social wellness, as well as physical health.  These factors are critical to treatment, medical outcomes, and long-term health, and ensure that children with differences reach their maximum potential and become their best possible selves.

CMI’s Camp Cosmos Programs are free, recurring, group-based sessions facilitated by a volunteer team of healthcare and/or educational professionals to provide: 

  • a supportive and inclusive environment that allows children with differences to interact with, befriend and inspire others like them;
  • support and resources for psychosocial and emotional health specific to this community, through play, games, art therapy, and group discussions;
  • strategies and therapeutic tools to cope in social situations, manage stress/anxiety, increase resiliency, etc.;
  • speakers living with chronic physical differences of their own to serve as mentors and role models; 
  • and most of all - FUN for the kids in a safe, judgment-free environment.
  • There are three types of Camp Cosmos Programs:  
  • “Day Camps”, which last about 5 hours. In 2021 and the foreseeable future, CMI is transitioning to hybrid “Camp Cosmos Weekends”, with one day of virtual activities and one day of in-person activities somewhere (for now) in San Diego, CA
  • Virtual “Family Meet-Ups”, which last 1.5-2 hours but take place more frequently.  
  • “Horsin’ Around” – an in-person horse therapy camp in Fallbrook, CA launched in 2021 in partnership with Mustard Seed Ranch and led by a therapist specializing in Equine Assisted Psychotherapy to address issues of social interaction, self-esteem, self-expression, stress and medical-related trauma.

For more information, please visit https://connectmed.org/psycho-social-programs/

or contact Executive Director Rita Albert at ralbert@conneectmed.org




Thank you, American Cleft Palate-Craniofacial Association! 

ACPA works to support the care of individuals affected by cleft and craniofacial conditions. These patients require care from a variety of specialists over time, and ACPA optimizes outcomes for individuals with oral cleft and craniofacial conditions through education, support, research, and interdisciplinary team care. 

Children born with cleft lip, cleft palate or craniofacial conditions may require individualized treatment from infancy into adulthood. That care is best managed when a team of specialists from several healthcare disciplines works with the family to develop and follow a treatment plan. Cleft and craniofacial teams are composed of healthcare providers working together to address a variety of needs throughout a person’s life. For more information, or to find a team in your area, please contact info@acpa-cpf.org

Join ACPA as we create a world where people with oral cleft and craniofacial conditions thrive! 

Thank you, Children's Hospital of San Antonio

The Children’s Hospital of San Antonio with its academic partner Baylor College of Medicine is the largest freestanding, academic children’s hospital in South Texas. 




Thank you, UF Health!

Leading treatments, comprehensive care for adults and children with craniofacial conditions 

The University of Florida Health Craniofacial Center 

The University of Florida Health is dedicated to the care of individuals with cleft palate and other craniofacial conditions. Through our craniofacial center, patients come to one location to access a full range of specialists who closely collaborate to find the best possible solution for each patient. 

The comprehensive care team at the UF Health Craniofacial Center includes health professionals in pediatrics, surgery, neurosurgery, clinical psychology, speech-language pathology, otolaryngology, audiology, nursing, oral and maxillofacial surgery, social work, pediatric dentistry and orthodontics.  When additional services are needed, a broader range of UF Health specialist are available in our hospital and outpatient clinics. 

Our team strives to meet all the health care needs of our patients with craniofacial conditions in an easily accessible way. Family members are also part of our team and find comfort in clear communications from caring professionals. 

We are committed to finding solutions for people with craniofacial conditions through treatment, innovative research and education of future generations of physicians and health care professionals. Academic health centers, like UF Health, make discoveries that lead to breakthroughs in patient care and often offer innovative treatments, through clinical trials, not often available in other places.

UF Health in Gainesville, Florida, is home to seven hospitals, including the award-winning UF Health Shands Children’s Hospital.

Visit UFHealth.org/craniofacial-center for more information.

Visit UFHealth.org/craniofacial-center/providers to learn more about our expert care team.

 

Thank you, myFace

For 70 years, myFace has been dedicated to changing the faces – and transforming the lives – of children and adults with facial differences by providing access to holistic comprehensive care, education, resources and support that pave the way for better outcomes.

•Through support of the myFace Center for Craniofacial Care at NYU Langone Health, myFace ensures that individuals and families have access to state-of-the-art, personalized team care.

•myFace also provides direct services that meet the day-to-day needs of the craniofacial community, including peer led support groups, delivery of craniofacial newborn care kits, complimentary flights and housing for out-of-town families seeking treatment in NYC.

•myFace provides access to education through topic-specific webinars, workshops, online resources and content, and strives to raise critical public awareness about craniofacial differences through programs such as its Wonder Project which helps to educate others on the importance of celebrating uniqueness and always choosing to be kind.

•myFace aims to provide individuals and families with the care, tools and information they need to successfully navigate their journey and let them know they are never alone.



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Thank you, also to DePuy Synthes and Orthomerica