Tuesday, December 4, 2018

#WonderWednesday Angie and Marco Garcia Speak At Neil Armstrong Academy in UT

Marco and Angie Garcia spoke on Sept 24th at Neil Armstrong Academy in West Valley City, UT in front of 120 sixth graders. The students recently read the book "Wonder" and welcomed two, real-life Auggie Pullman's into their classroom.

One of the West Valley City school teacher's said "Angie and Marco did a wonderful job of making students feel comfortable in asking honest questions. They presented themselves in a way that students were able to connect to them. They were very down to earth and enjoyable to listen to.”

Angelica reflected on her Facebook page about the September speaking engagement by saying, "Our first LIVE Wonder session with 4, 6th grade classes (120 students!) since RJ was born & etc was heavenly perfect. We were continuously honest with the teachers (in advance) & kids & shared about RJ; the timing (how it’s just been almost 4 months) & everything & they still wanted us to come as much as we wanted to. It was raw, it was (continuously) so honest, so open & truly beautiful. They genuinely kept saying it was perfect & met all their goals on teaching the value of true kindness as well as getting to know people with facial differences as people. At the end, I added a new part to our teaching; the mom perspective: how I would have wanted our son to be the nice kid & have true friends as well as be the truest self he can be at all times. Bottom line: Being genuinely kind & true to yourself & others is one of the best & so many ways to be a wonderful you. While we were doing the photo opt, one teacher was inspired to have the kids do a heart gesture with their hands shot. I have a feeling that was for RJ ❤️
Always teaching the world & heavens as a family to be kind & real" 💛

Thank you Angie and Marco for sharing your story with these kids.

Sunday, December 2, 2018

Ian's Bibler's "Wonder"fun Two-Minute Message

Ian Bibler had the opportunity to share his story in front of his church family. After his moving testimonial about his past struggles and upcoming jaw surgery, the crowd gave him a rousing, round of applause. Many thanks to Bibler's church family for providing him the platform to share more about Treacher Collins syndrome with them. Ian, everyone at CCA hopes that you are doing well during your post-surgical recovery. 

Sunday, November 25, 2018

Hannah Brown in Her Own Words

Editor's Note: Thank you, Hannah for sharing your inspirational 

writing with us. Keep up the great work! 

By Hannah Brown
Having a Craniofacial difference means facing hard challenges, I was born with Apert Syndrome. which means all my bones were fused together. Sure, I may look different on the outside, but on the inside I sound and act like a normal person. Even though I have limitations, I can pretty much do normal things like everyone else.
I had to deal with name calling, teasing, pointing, constant staring when I was younger because of my facial difference. Now that I'm getting older I still get the stares, but thankfully not so much the pointing or teasing.
In November 2017, I flew solo for the first time. It was awesome. Back when I had the trach, I was always scared of flying by myself with it, but not now. Since 2017, I have flown four times. I'm becoming a pro at flying.
A few years ago I decided to write a book about my life and the challenges of living with Apert Syndrome. The book describes what I went through all these years. The name of the book is Facing the Challenges of Life with Apert Syndrome. I'm taking a break from writing, but will soon get back into working on it.
Life is full of trials and challenges. I know I'll be living with this for the rest of my life. Nothing will limit me from doing the things I want to do and the things I love.
Living with Apert Syndrome has a lot of risks, but I'm willing to take whatever risks God throws at me because I know I can handle anything. 

Saturday, November 24, 2018

Ask the Adaptive Athlete: How To Conquer Your Gym Anxiety and Begin Working Out

The weather is cold, so we all have to move our workouts inside. For many that means either working out in our living rooms or going to a nearby gym. While neither of these options sound inviting, they are what we are left with.  Fear of the gym, performance anxiety in front of many people, is a real phenomenon for all people. Gym anxiety is further compounded for people with a facial difference, different anatomical structure, in wheel chairs, with artificial limbs, and other physical differences. So what to do?

Change Your Mind and the Body Will Follow

Holding an experimental mindset will help you walk into the gym. Thinking "let me try this machine out for a couple of minutes" versus, "I must use this machine for x amount of reps and x amount of sets or I am a complete failure at life." could mean the difference between regular attendance at the gym and never returning. If our minds are flexible, then our body will follow. 

Move the Body Into Action 

Pick up a weight, 2 lbs, 5 lbs, whatever, and see how it feels in your hand. Try a basic bicep curl, or a shoulder press. Ask yourself, "how does that feel?" If you didn't like it walk over to something else, like the TRX functional training, or the mats to do some stretching or basic, body weight exercises. The stretching and body weight stuff can even happen at home! Be open minded. think of the gym as you once thought of your elementary school playground. Try the slide, swings, or just hang out and watch as others do. You can learn a lot by watching someone.

Your Body, Your Form

File this article published in Self Magazine under "one-size-does-not-fit all."  For those with  Treacher Collins and Apert Syndrome that may feel daunted by the gym because your form is not "right," we see you and hear you. And now, someone has written about it, too.

Check in With a Professional 
People probably wonder how they could approach the gym if they have different bone and joint structure than others. Everyone is built differently. While there are general best practices for how you should lift weights, run, etc., they may not be correct for your body. Check in with a physical therapist or personal trainer in order to learn how your body works best. While you are at it...(here's the disclaimer): Talk with your doctor before you begin any exercise routine. If you are interested in running, get gait analysis done, or try the different cardio machines to see which is the best fit for you!

Assess and Ask Questions
If you can't afford a personal trainer, feel free to ask me any questions that might come up at kjackman98@gmail.com. Also, just slowly take on that experimental mindset and explore the gym like you once explored the playground. See how you feel during the chosen exercise, does it hurt? Are you sore? Reassess in the hours following a workout and in the days after to ensure you do not injure yourself. 

Don't worry if the exercises and lifts that you are performing do not look like those done by others around you at the gym. You need only to do what is right and safe for your body.

Adapt To Perform Youtube Page https://www.youtube.com/channel/UClosZzwrXmjPzDCwD9OcC0A

Friday, November 23, 2018

Spotlight on Local Resources: Florida Healthcare

If you are a Florida resident, you may benefit from this informative document focusing on all kinds of medical resources available to you! Special Health Care Needs Guide for Florida was updated in July. We, at CCA, thought we would share it with you. 

We hope this helps.