Wednesday, December 18, 2013

A Letter from Casey

Today's post comes from Casey Deakins, who happens to have a BIRTHDAY today. Happy Birthday, Casey, and thank you for your encouraging words. 

Dear Parents just starting on this crazy journey in the Cranio world,

My name is Casey, I am 27 years old with Apert Syndrome, and at the age of 13 I was also diagnosed with Asperger’s Syndrome, an Autism Spectrum Disorder. I’m writing you this letter in the hopes that it can bring you comfort and advice for the following years of your journey. To start, it does get better. While it may seem like the bumps are never-ending, it does get easier. But if I could offer a crucial piece of advice, it would be to never let your child give up. The “I can’t” and “I will never” can be turned into “I can do this!!!” It may take a little more elbow grease but it CAN be done, dreams CAN be reached. I am 15 months or so away from graduating with my Bachelor of Science degree in Public Administration, and while due to unforeseen circumstances, the journey has taken 10 years to complete, I kept pursuing my dream. I will admit that I still have days where I start breaking down and feeling like I can’t accomplish what I've set out to do, but then my awesome family are there to go “Casey…..what are you doing??? You can so do this!!!!!”

As Nelson Mandela spoke so eloquently, “I learned that Courage was not the absence of fear but rather the strength to overcome it. The brave man is he who does not feel afraid, but he who overcomes it.” And as an old college professor once told me “Anything you have to work hard for, is worth it in the end.” Coming from someone who has had many doors slammed in my face for one reason or another in the past 27 years of my life…the rewards are made that much sweeter with each door that closes.
Happy Holidays,

Friday, December 13, 2013 Gift Guide: For Teens

It's easy to sign up and start contributing to CCA using This year, our Gift Guides feature items with a great donation rate to CCA and some other cool goodies. Learn more about here and happy shopping!

  1. WANT: "Drink in your favorite tunes with this innovative sports bottle design. Perfect for the gym, beach, or travel, a slot for your iPhone 4 or 5 amplifies songs through the bottom of the bottle as you sip your sports drink or hydrate after a long, musical run." This bottle makes a great gift for your active teen! [4% donation to CCA]
  2. NEED: "Cozy up and 'Deer to be Different'  (or 'Hare to Be Different') with these wintry woodland accessories, showcasing a red deer bucking the trend and standing out against a crowd of uniform gray pals. Made of recycled cotton and acrylic yarn in a third-generation, family-owned facility in Binghamton, NY," these charming designs are a perfect, needed staple to any winter wardrobe. [4% donation to CCA]
  3. WEAR: This awesome tank boasts one of my favorite sayings, "Weird is just a side effect of awesome!" I love wearing t-shirts with a message. It's a great way to start a conversation on a positive note nonverbally. 
  4. READ: Writing and reflection are very important ways for teens to channel emotions and work through difficult issues. Reading these prompts helps budding writers hone their skills at personal reflection, self-improvement, and writing.  "This handy workbook will give anyone plenty of fun, low-pressure opportunities to get the imagination flowing. Collected from the minds and notebooks of the San Francisco Writers' Grotto, the book's prompts range from personal reflection, to silly lyric writing, to character development, and everything in between and beyond. Take them seriously or just have fun. Grab a pen, open this book to any page, and find the writer inside you." [4% donation to CCA]

Monday, December 9, 2013

Media Monday: Difference and Fashion

Pro Infirmis: Because who is perfect? Get closer.

It's no secret that I love fashion blogs, so when I came across this Pro Infirimis project, I couldn't get it off of my mind and I had to share it with you! I am thrilled at the prospect of seeing non-traditional models in fashion because as I've said elsewhere on the blog, "I like different." Different is beautiful and this project celebrates differences. Projects like this one remind me that we are changing the world and how the world sees disability and difference.

Check it out:

From the Huffington Post article:

Pro Infirmis, an organization for the disabled, created a series of mannequins based on real people with physical disabilities, working with individuals like Jasmine Rechsteiner, a Miss Handicap winner who has spine malformations, and Erwin Aljukić, an actor with brittle bone disease. The project's title? "Because Who Is Perfect? Get Closer."
The beautiful process was documented in a video (watch it above), capturing the joy of the models seeing their own unique figures recreated for the first time. But the best part of it all is that the mannequins were actually placed in store windows today, filling the shopfronts on Zurich's main downtown street, Bahnhofstrasse, in honor of International Day of Persons with Disabilities today.
"Seeing it there for real is quite a shock," said one of the video participants. And that's exactly the point. Raising awareness of those with disabilities, specifically in the realm of fashion, is a conversation that's already begun with groups such as Models of Diversity, which aims to bring models of all shapes, sizes and colors to the fashion runways and media.
Outspoken individuals like Kelly Knox, the winner of BBC's "Britain's Missing Top Model," and Angela Rockwood, who returned to her modeling career with a Nordstrom campaign after becoming a C4-5 quadriplegic, have also made their voices known.
Some stores have made concerted efforts to include body diversity, including those with disabilities, in their ads. Nordstrom has been doing so since 1991, while British department store Debenhams made headlines earlier this year with a Spring 2013 look book that featured a woman who was an amputee.
It's still an uphill battle to make the mannequins in our store windows reflect the shoppers passing by. But "Because Who Is Perfect? Get Closer" and the Swiss stores who participated prove that it can definitely be done.

Saturday, December 7, 2013 Gift Guide: For Her

It's easy to sign up and start contributing to CCA using This year, our Gift Guides feature items with a great donation rate to CCA and some other cool goodies. Learn more about here and happy shopping!

  1. WANT: This Kate Spade wallet is pretty and polished. It's also a little touch of luxury for her. [2% donation to CCA]
  2. NEED: Winter weather is rough on the feet, so this Bliss Foot Patrol kit will moisturize and rejuvenate tired tootsies. Bonus! The best time to treat your feet? While watching holiday movies on the couch with hot chocolate, of course! [4.4% donation to CCA]
  3. WEAR: This beautiful Millifiori necklace is a wonderful gift for someone special and a lovely way to support CCA. Supplies are limited, so order one before they're gone!
  4. READ: "You’ve never read a book like The Reason I Jump. Written by Naoki Higashida, a very smart, very self-aware, and very charming thirteen-year-old boy with autism, it is a one-of-a-kind memoir that demonstrates how an autistic mind thinks, feels, perceives, and responds in ways few of us can imagine. Parents and family members who never thought they could get inside the head of their autistic loved one at last have a way to break through to the curious, subtle, and complex life within." [3.2% donation to CCA]

Monday, December 2, 2013

Media Monday: Sarah Atwell's Message

Gotta love her t-shirt: "Just Ask!"

Today's Media Monday post is a viral video that 17-year-old Sarah Atwell published online to share her story. Sarah has NF and reports being bullied since 5th grade. While her story is heart wrenching, it is also inspirational. Today, we celebrate Sarah's voice, her courage, and her strength.

A Discovery Fit & Health special will air about Sarah's journey on December 18, 2013 at 10pm (EST). As some CCA families have also experienced, agreeing to film a show doesn't mean you'll get to choose the title. Unfortunately for Sarah, "Girl with Half a Face," is not the title she would have chosen, but I think we can all agree that Sarah has a beautiful, full face! At CCA, we know there is no definition or standard of beauty. As for me, "I like different." I like different faces, I love furniture that others would discard as "scratch & dent" because it has richness and character, and confidence creates its own attraction. I think many of us in the cranio world agree, facial differences are beautiful, intriguing, and inviting. As we form a critical mass of folks who like different, we are the change in the world we wish to see.

For more info on Sarah's story, check out this link: The Chronicle Herald

Sunday, December 1, 2013

Grateful Sunday: iGive Shoppers

Just in time for CyberMonday, we want to remind you about - an awesome way to share a percentage of your purchase with CCA when you shop online. We're so grateful for everyone who shops with and selects CCA as their designated charity, because every donation adds up! In 2013, I've earned $18.73 for CCA ... and I know you guys shop, too!

It's easy to sign up and start contributing to CCA. This year, our Gift Guides will feature items with a great donation rate to CCA and some other cool goodies. Learn more about here and happy shopping! --Erica

  1. WANT: I love this office-friendly print! Hang it over his desk as a reminder to each other and visitors that kind words are spoken here.
  2. NEED: Kiehl's products are perfect for him. This no-fuss moisturizer with SPF should be a staple in his medicine cabinet. [3.2% donation rate at]
  3. WEAR: Lentil-gear helps support Lentil's Ambassadog awareness activities and is lots of fun. Hook him up with this classic tee with a cute twist! 
  4. READ: Tom Rath is a NYT Bestselling author with a rare genetic condition that makes his health uncertain at best. His books on leadership and well-being are critically acclaimed. In his latest book, Eat Move Sleep, he reports on his research of the importance and interconnectedness of eating, moving, and sleeping. [2% donation rate via]