Friday, July 26, 2013

Friday Remix: Distinctive Style Magazine

I saw this wonderful article on Facebook (thanks, Meg!) and thought it was a great story to share with our readers. Former fashion photographer Rick Guidotti upended his career to start a nonprofit called Positive Exposure. The story is featured in A Distinctive Style magazine. Check out the excerpt below and click through to read the full story online!

Tuesday, July 23, 2013

Summer Reading List: Erica

The CCA Blog Contributors are creating lists of their top recommendations for a "Summer Reading List." Here are my recommendations for some fun reads with a relevant message for the 18+ set.

My summer reading list had a nice theme this year: Comedians. I chose these books because I admire all of the women who, in some way, each overcame (enjoyed?) awkward childhoods with humor. And I am totes obsessed with comedy right now!

Is Everybody Hanging Out Without Me (and Other Concerns)? 
Mindy Kaling
Kaling's book is a little definitely softball for my style, but it's a good read that highlights the power of supportive friends and family.

Kaling's isn't really my type: she's a romantic and believes a chapter can consist only of a list (No!) while I'm more of a pragmatist and who can't post a blog under 1000 words. However, despite our differences, Kaling's love for family and friends is heartwarming and comforting. This book is perfect for a beach read or, as Kaling would likely suggest: that first week of college when you don't have any plans or homework yet, so you need an acceptably nondescript book to read in the student union while you wait for someone from your dorm to show up, so you can accidentally bump into them and suggest grabbing a coffee. It's like the perfect romantic comedy set up, y'all!

Favorite quote from the book: 
"Teenage girls, please don’t worry about being super popular in high school, or being the best actress in high school, or the best athlete. Not only do people not care about any of that the second you graduate, but when you get older, if you reference your successes in high school too much, it actually makes you look kind of pitiful, like some babbling old Tennessee Williams character with nothing else going on in her current life. What I’ve noticed is that almost no one who was a big star in high school is also big star later in life. For us overlooked kids, it’s so wonderfully fair." 

Tina Fey

Tina Fey for Mayor of Life! Fey is amazing. She's funny, sincere, and a good advice giver. This book made me laugh and cry. If Mindy Kaling would make a great bestie, Tina Fey would be a stellar life coach. In between hilarious jokes about fashion fails and in-general awkwardness, Fey peppers in solid advice. One of my favorite stories was when Tina decided to compete for a job that she knew would knock another, very deserving woman, out of the running. Workplace ethics interest me and kind of I love this quote: [Stealing that job] "makes me sound like a jerk, I know," she writes. "But remember the beginning of the story where I was the underdog? No? Me neither." This book is more than a great read; it's a a collection of little life lessons.

The Bedwetter 
Sarah Silverman
Confession: I am only halfway through this book, but Silverman's struggle with enuresis -- bedwetting -- lasted into her teenage years and she also describes, in the lightest manner, her ongoing depression. This book is by far a raunchy romp, so delicate readers, run back to Kaling! Silverman's description of moving to NYC (another common theme in all three books) is easy to read, fun, and full of comedy tidbits.

Current favorite quote from the book:
"My stepfather, John O'Hara, was the goodest man there was. He was not a man of many words, but of carefully chosen ones. He was the one parent who didn't try to fix me. One night I sat on his lap in his chair by the woodstove, sobbing. He just held me quietly and then asked only, 'What does it feel like?' It was the first time I was prompted to articulate it. I thought about it, then said, 'I feel homesick.' That still feels like the most accurate description - I felt homesick, but I was home." 

-- Erica

PS: All of these are somewhat insensitive, especially Silverman, about people with differences and tossing around the word retarded. I just grin and bear it, but it miffs me. I understand you can't police comedy, but I hope that younger comedians grow more aware and replace outdated terms and stereotypes. :) 

Thinking about buying these books instead of renting? Order online via and CCA will receive a portion of the sales! 

Thursday, July 18, 2013

Mom, I got this!

Last spring I was in a grocery store with my boys when a woman was very rude to us in the checkout line.  She was extremely annoyed because she believed we should be in a different line.  I finally looked her in the eye and asked, "Do you really need to act like this?"  Her arrogant reply was as expected, "I'm very busy.  You should be in the express line!"  I told the boys to go ahead as they had been waiting in line, and we were next.  The lady huffed and continued her attempt to make us feel uncomfortable.  I ignored her as we calmly took our time scanning and purchasing the three items we bought.  As we were leaving I said to Peter (loud enough that she could hear), "It's too bad that some people think they are more important and busier than everyone else."  Later in the car, I told Peter that she was an adult bully and that people like that don't expect anyone to stand up to them.  They think they can bulldoze their way through life by making others feel inadequate.  I explained to Peter that I was glad we didn't back down and let the woman go ahead of us, but I was also disappointed that I allowed such a rude person to upset me.  It didn't occur to me at the time how much Peter learned from my behavior that day.

Peter is attending a summer camp this month where no one is familiar with his differences.  He goes incognito with his prosthetic ear and wears a band-aid over his open stoma (trach hole).  The band-aid is obvious, but I was surprised when he said that one of the boys noticed "something different" about his ear prosthesis.  "Well, he must have noticed that it looks different and is curious," I said.  Peter just shrugged and remained silent on the issue.

Unfortunately I was wrong, something I suspect Peter already knew.  This boy repeatedly makes other students cry, destroys things, teases, and threatens.  Peter became his target last week when the boy told him to get off a piece of playground equipment.  When Peter refused, the kid became angry and shouted, "Your ear is weird, your neck creeps me out, and you talk funny!"  Peter, initially thinking he was joking, quickly realized the boy was serious and threatening.  So, he got off the playground equipment and walked away.

When Peter later told me the story, I was disappointed that he was so passive.  Fortunately, he didn't let me down because he went on to say, "But then I remembered what happened at the grocery store.  So, I walked up to the boy and said, 'You're a jerk'."  "YES!" I shouted with a fist pump.  I was so proud of him!  "You did exactly the right thing," I said.  "What did the boy do after you called him a jerk?"  "Nothing," said Peter.  "But some of the girls saw it happen and tried to make me feel better.  They like me (wink, wink)."

Peter tells me he has courage and is not a wimp.  He continues to stand up to this boy and is even protecting one of the other kids from his bullying.  I've asked repeatedly if he wants me to talk to the teachers.  "Mom," he says, "I got this.  I can handle it."  The incidents have mostly been name calling and hurtful words, so my inner mama bear is content to let things play out.  Also, I can tell that Peter is loving the activities and enjoying the company of the other kids and teachers.  That he is getting an unexpected lesson on how to stand up for himself is all the better.  I'm now the one learning from his leadership and behavior!

Peter Dankelson - 12 years old - Goldenhar Syndrome

Thursday, July 11, 2013

Summer Reading List: Stephen

The CCA Blog Contributors are creating lists of their top recommendations for a "Summer Reading List." So get your library cards out and pack your beach tote -- we're checking out some of our favorite reads this summer!

Stephen recommends:

The Story of My Life by Helen Keller

I recommend this autobiography because it is so genuine and inspiring...Helen went through such extreme challenges and the emotions the book invokes are very powerful and are very familiar to anyone facing life's challenges including those living with craniofacial issues. 

Charlotte's Web by E. B. White

This book is great because everyone needs a Charlotte the Spider in their life to make it through having craniofacial issues.  I have had many many Charlottes throughout all stages of my life who have supported me emotionally and spiritually.  The book also emphasizes how important it is to develop a sense of community and to help others...we are all in the same boat and need each other to thrive in this world.

A New Earth by Eckhart Tolle

Changing the way we think completely changes the quality of our lives.  We can change ourselves (and spend that energy enriching our own lives rather than trying to change everyone on the outside).  I wish I had found this book or had these principles and skills taught to me decades ago.

Thinking about buying the books instead of renting? Order online via and CCA will receive a portion of the sales! 

Monday, July 8, 2013

Media Monday: Lentil Goes Viral!

By now, if you're a part of CCA you've probably heard about Lentil. The good news is that the rest of the world is starting to hear about CCA via our new friend, Lentil Bean and his owner, Lindsay Condefer.

Lindsay is an amazing person. She not only works to find good homes for loving animals via Street Tails Animal Rescue, but she's also now a full-fledged CCA fundraiser raising over $30,000 between Lentil Fest and the online giving site she's set up for CCA families.

The media sensation that is Lentil has truly given CCA an opportunity to spread the message of awareness and acceptance. "Beyond the face is a heart" and beyond Lentil's sweet muzzle is a committed fundraiser who we truly admire and appreciate.

Send your thanks to Lentil and Lindsay by leaving them a note of gratitude on their Facebook Wall and don't forget to chip in to the Retreat Fund. Every $1 makes a difference!

MEDIA MONDAY: Here are some of the news outlets featuring Lentil & CCA. 
(Most of the photos are from Lentil's Facebook page.)

We love Lentil!

Send any media mentions you find to [email protected] and we'll feature them on an upcoming Media Monday!

Friday, July 5, 2013

Friday Remix: Prudie's Advice

Happy Friday, everyone!

Today's Friday Remix comes from the advice column "Dear Prudence." I think advice columns can be great resources for advice on difficult life situations, especially when written by credible sources.

Prudie (Emily Yoffe) recently tackled something that most of us reading this blog struggle with: How do I deflect negative comments about my looks? What do I say? (And Moms) How do I keep from blowing a gasket when someone is mean on the playground?

I think Prudie offers some sound advice, minus all the cosmetic/treatment suggestions. If cosmetics make you feel more confident, by all means use them! But to me, they don't guard against nosy / rude people effectively and they do not address the root issue of how to handle something as emotionally jarring as a stranger assaulting your appearance. So that advice is kinda meh and not applicable. However, I wanted to remix her column in our blog because it offers another perspective on something that we all deal with on a regular basis.

How do you think Prudie did? What you would recommend to "Unwanted Comments?"

Q. Unwanted Comments: I have a skin condition that causes me to look really red, like a bad sunburn. I've talked with my dermatologist, but unfortunately it's incurable with no treatment options. Sometimes if I'm really stressed or if I've been physically exerting myself, it flares up, and I'm loathe to go out in public. I've had complete strangers go up to me and trumpet, "Wow! Your face is really red! I mean, REALLY red!" I try to brush it off by saying, "Well, that's what I get for taking a cruise ... " However, last weekend I was shopping with a friend when an older man came up to me to (loudly) comment about how red I was. He even called his wife over to look! I uncharacteristically snapped and swore at him, calling him things I can't type here and getting in his space until he quickly slunk off. To be honest, it felt good to let him know what I really thought of all of these awful comments! My friend was shocked at how rude I was and told me that I shouldn't have done that. She knows about my skin condition and has heard the comments before, but when I told her he deserved it and I was sick of being polite, she told me she had to go and left the store. Prudie, I'm so sick and tired of these comments. I'm also upset that my friend doesn't understand how embarrassing and frustrating it is to have people constantly commenting on my appearance. What should I do?

A: It is truly astounding that strangers think they have a right to invade the privacy of those with unusual conditions or disabilities or who have children of a different race, etc. Over the years I've had many questions from these beleaguered troops on how to deflect nosy strangers. The most helpful advice has come from others in the same circumstance, who often advise quick disengagement. Simply walking away can be the best strategy. That way you have underlined the rudeness of the inquiry without the emotional cost to you of engagement. Others have suggested a quick, "Excuse me, I don't talk to strangers." But the key is to have a go-to response that allows you to deflect the inquiry and get on with your day. I totally understand that on this occasion this man was so rude that he flipped a switch in you that caused you to make a scene. However embarrassed your friend was, surely she should have been appalled by the crudeness of the man who insulted you, and she should have understood that sometimes things are just too much and we snap. Of course, you don't want to make a habit of letting fly, but if giving this guy the business this one time gave you a sense of relief, then he sounds like a particularly deserving recipient. Now that things have calmed down, you could reach out to your friend and explain that being pointed at like a circus freak simply made you snap and that you're sorry she had to witness a scene that upset her. If she isn't understanding, then she's not much of a friend. I'm also wondering, however, how much of a doctor your dermatologist is. Of course he or she may be right and there may be simply nothing to do about your condition. But I think this requires a second opinion to make sure you are not missing out on any possible new treatments. I also think you should look into temporary cosmetic fixes. There are skin foundations that are used to cover birthmarks that may be a good solution for you. You say your condition is sometimes so bad you don't want to go out in public, but it's terrible to feel constricted that way. It could be with a few minutes of cosmetic art, you could much more confidently blend into the crowd.

Tuesday, July 2, 2013

Grateful Sunday

I neglected to post our Grateful Sunday on Sunday because I was heading home from Orlando and the most amazing CCA Retreat I've been to yet.

Upon my return, I'm grateful for so many things ... new families, old friends, renewed inspiration, and solidified resolve. I've also returned with more than gratitude and appreciation for our CCA Parents. Two days have passed and I still haven't returned to my full energy charge. How do you do it?! How do you keep up with these amazing kids and teens? With great love and grace, that's how!

There are truly too many things to list that have stirred gratitude in my heart this past week, but I would like to offer video of our CCA kids expressing their gratitude to RJ Palacio, author of Wonder, and her tweet back to us. Thanks, RJ and thank you, CCA!

(Click the photo below to watch the "Standing Ovation for RJ" video on YouTube!)

Follow CCA on Twitter:  @CCAKidsTweet
Follow RJ Palacio on Twitter:  @RJPalacio