Adults & Alumni Respond to The X-Files

Many of our fans and followers on social media were unhappy with the portrayal of several craniofacial conditions and rare diseases on the recent revamped series, The X-Files. The Adults & Alumni subcommittee of CCA drafted this letter in response to the show and in hopes that we can continue the discussion around the portrayal of differences and disabilities in the media.

You can read it here, signed by Chair of the committee, Frederick Seitz.

Pro Tip: Enjoy the Beach with a Trach!

Today on the blog, CCA Mom Shannon shares a tip she learned on how to help her son enjoy the beach --- with a tracheostomy. Shannon Polzin is a CPC, Medical biller and the mother of Logan Polzin in Massillon, Ohio. She enjoys making fun memories to reflect on and playing ball with the family dog, Leo.

My 12-year-old son, Logan, has always wanted to visit the ocean and play in the sand and water. But with a trach (even though it’s capped), this is something that is dangerous. After researching for years, we finally found a way to take him to the beach to let him be a kid and have fun! So, we are excited to share our solution.

We bought some Tegaderm (usually used to cover IVs) and poked a small hole in the Tegaderm and placed his trach through the hole.  We then carefully pulled the paper off the Tegaderm (to show the sticky side) and  placed his trach back in his neck,  sticking the Tegaderm to his neck around his hole.

What my son liked most about this is that it was semi-flexible and transparent.

It is important that your child is capped and doesn’t go under the water…this idea is only water resistant… not water proof!

It is also important to monitor the Tegaderm to make sure it doesn’t begin to peel away from the skin if your child wears it longer than a few hours.

Remember to stay with your child in case he or she would get hit by a wave and fall so you can keep him or her safe.

Make sure the child keeps it on until it's time to shower.  Once you are sure all the sand has been removed from his or her body, then you can peel off the Tegaderm (like a big sticker).

You can find this item on Amazon*…or just search the web for a company that you like.
Tegaderm also comes in different sizes…so make sure when you are ordering you get the right size based on the child's size and the area that needs covered.

Then, get out and enjoy some fun in the sun!

*Make your shopping count! Shop through the iGive/AmazonSmile portal and double your donation, just by shopping!

Does a first impression need a warning?

Today on the blog, Christine Clinton, CCA Adult, shares an excerpt from her memoir . I asked Christine if I could share this part of her story because I think it's something a lot of us have experienced.

You may know this experience too... the well-intentioned "trigger warning" our friends give out before someone new meets us. Of course we know, our friends and family prep others about our difference to protect us and help out, it also can be disheartening. We want to be accepted for who we are and sometimes we desire the opportunity to make our own, real first impression.

Here's what Christine has to say about it:

There have been a couple of individuals, who I have encountered, who have deemed it necessary to have to 'prepare' other individuals, about me, before meeting me for the first time. I just want everyone who is reading this to know, that no one ever has to be 'prepared' to meet me. I am as much of a person as everyone else is, and I deserve just as much respect as everyone else does. I am a human being, and I deserve to be treated like a human being. I don't understand why some people have this need, but really, is it necessary? I don't think so; but then again, that is my own opinion. 

Once I overheard a family member telling my parents that 'I was not normal,' that 'my parents were only making me think that I was normal.' That made me very sad, and very, very upset; because let's face it, no, I am not the 'normal' that society deems as 'normal,' but like I said, I am 'normal' in my own right and in my own way.

How do you feel about a pre-meeting warning?

New Overview: Pain Management in Children

We have a new Overview to share with you!

As part of CCA's commitment to providing resources for families affected by facial differences, CCA publishes several "One-Sheet Overviews" each year. Our newest overview concerns pain management for our cranio kids. Thanks to Dr. Earl Gage at Kids Plastic Surgery in St. Louis, we are able to share this overview on the Pain Management in Children -- A Surgeon's Perspective with our families and communities.

International Day of Radiology 2015: CIBR Spotlight

This Sunday, November 8 is the International Day of Radiology 2015, #IDoR2015. This year's theme is Pediatric Imaging ... which makes it a perfect time for CCA to highlight the CIBR in honor of this special day. The Coalition for Imaging and Bioengineering Research (CIBR) is a partnership of patient advocacy groups, academic Radiology Departments, industry companies, and scientific societies. CIBR's members work together to advocate for imaging research at the National Institutes of Health (NIH) and other federal government agencies. In addition, CIBR educates the public about imaging research and its benefits for patient care, and serves as a liaison between Radiologists and patients.

The mission of the CIBR is "Enhancing Patient Care through Advances in Biomedical Imaging." As most CCA families understand, imaging is incredibly important to our kids' health (and our own!). Without imaging, diagnosing and problem solving our medical issues would be much more invasive and quite frankly, painful. Imaging has changed the landscape of possibilities and advancements in the field keep improving the patient experience and most importantly, our kids' health and wellness.

We hope you will check out the great work CIBR is doing and follow them on Twitter, Facebook, YouTube, and Instagram. Together, we're spreading awareness and information about craniofacial differences, medical options, and the need for patient-centered care.

Find out more about the CIBR with this infographic and on their website.

Mom to Mom: A Hug in the Parking Lot

We found this post in one of the craniosynostosis groups on Facebook, and graciously, the author, Xanthe Faulkner, agreed to let me share it on our blog. I believe it's a succinct and beautiful peek into the lives our amazing cranio moms and dads, and a great example of why family networking is so critically important and part of the work we do at CCA Kids. 

***

Why we cranio families are who we are (long!):

So Helmetbaby here is in daycare. And the day he started, 4 months ago, I looked at a boy in his class and thought "Saggital. For sure." But you know how it is - I never crossed paths with his parents, don't know the family, maybe he's already being followed, etc... But we're very public about our son's journey, so all the staff know us and the details of our little guy's condition and journey.

So this morning I was carrying my son across the parking lot towards the school. And a woman I don't know calls to me, softly, and comes over. "I need to talk to you," she falters, "I'm so happy you came just now. The teachers said I should, that I could..." And tears well up in her eyes, and I knew right away. With my son cradled in one arm I wrapped my other arm around this stranger and held her tightly. Of course she was the other little boy's mom, and she had gotten CT confirmation of fused saggital and metopic the day before. "I'm so upset," she said, soft spoken and shocked, "I never expected. I'm beside myself. I forgot all my groceries in the store yesterday. I'm so distracted and scared, I don't know what to do."

She doesn't have Facebook to get support from you all, she hasn't even met with a neuro yet, but I gave her my number. We'll have coffee. I told her my son was fine, more than fine, and that while it had been scary, the results were fantastic. That everything will be okay. And guys, I felt so clearly... That we as cranio parents are the only ones that get it. The sudden fear of realizing they will have to cut your child's skull open and piece it back together. The terror of things going wrong. Worries about their little growing brains. The unknown. And I thought about how people who understand first hand are the only ones who seem to bring any comfort sometimes. You can't fake having been there. And once you've been there, you are driven to reach out to others standing in the new fear,

To hug them in the parking lot,

To whisper,

"I know."

Thank you all for being that for me and so many other families. 

Thank you for teaching me how to be that for others. XO.

-Xanthe Alyse Chefurka Faulkner

Talking to a Person with Differences Can Make You Kinder

Today on the blog we have a video of a research study conducted as a part of the BBC Documentary by Adam Pearson, "The Ugly Face of Disability Hate Crime." This excellent documentary follows Adam as he seeks to uncover some justice regarding disability hate crime (including cyberbullying) and also as he tests out his theory that engaging with people with facial differences can in fact change how individuals will act towards people with differences in the future.



This documentary is certainly timely, because as students head back to school, it's important to help them reach out to their classmates and educators about their conditions. By proactively scheduling introductions and presentations, students develop the skills of assertiveness, positive non-verbal communication, and self-confidence. Learning to talk about one's self can be difficult for anyone, and can be even more so with a facial difference. However, using tools and resources like our Wonder classroom kits, students can proactively set the tone for a school year built on kindness, empathy, and respect.

Please contact us if you'd like help setting up a presentation at your school.

The Best Friends Bash

We're pretty sure this is the best thing you'll see all day.

We love CHOP & PennVet's "Best Friends Bash," a fun party which brings together therapy dogs, including many with physical differences, and kids with facial differences (including many of our CCAKids!). We could go on about how joyful and inspiring the result is, but really you have to see this video...


The Best Friends Bash from Carl Weiss on Vimeo.

Check it out in print and photos at PennCurrent.

Three cheers for everyone who put this amazing event together and all of our friends who participated! 

Our Journey to ASL

Our Journey to ASL - American Sign Language
by Rose Seitz

My son, Freddie, was born in 1992, three months premature, diagnosed with Goldenhar’s and a multitude of health issues.  The first year was a challenge but was also filled with much joy, watching him grow, smile, laugh and enjoy life.  He had a trach and was not able to vocalize very well so we started teaching him sign language at 6 months.  He caught on quickly and was soon signing in sentences.  At that time our sign language education consisted of my frequent trips to the library gathering all of the books I could find on the subject.  No Internet for me, it was 1992.  

At that time he was hearing but at the age of one we noticed that his hearing started to diminish.  All of the hearing was gone by the time he was three. Over those three years we had been bringing him to speech therapy at our local hearing and speech center.  The therapist was teaching us signs as he was learning them.  I labeled EVERYTHING in our house with sticky notes. Shoes had sticky notes: “SHOES,” and we would show him the sticky note, the shoes and sign shoes. You name it, it had a sticky note.  When he was three we enrolled him in pre-school.  At that time we all knew sign language for 3-year-olds but now it was time to learn some syntax so our entire family -- grandmas, grandpas, aunts, uncles, cousins, friends and even his pre-school teacher and her husband -- enrolled in a sign language course at the local hearing and speech center. 

This was a new chapter for us, as we started signing in more “English” structured sentences.  You should know there are a couple of different schools of thought out there regarding teaching a deaf child sign language.  Some believe that a deaf child should be taught ASL, which is a separate language from English.  It has its own syntax. It is not English syntax.  Some believe that a deaf child will learn better if they learn ASL first while others believe in teaching the child SEE, Signing Exact English.  Every spoken word is signed in the same order.  It was back to the library for me.  I read every book, pro and con, I could get my hands on so I could decide what would be best for my son.  Ultimately, we decided we would sign SEE until he reached a point in his teen years where he could transition into ASL.  I believe we made the right decision for him.  

He started reading at age 4. The first book was Joshua James likes Trucks.  We read the heck out of that book.

We used SEE primarily until the 5^th grade.  From Kindergarten thru 4^th grade, Freddie attended a mainstream school that had a hearing impaired unit.  We had decided to send him there instead of our home school district as they had teachers who could teach a deaf child to read and write.  The problem with that was they treated deaf students just like they were “impaired.”  Thru MANY struggles in that school district we finally transitioned him into our home school district in 5^th grade.  I’d like to take credit for the move but it was really Freddie who wanted it.  He wanted to attend the same school district his brother went to and he wanted to be treated like everyone else, who could blame him?

That year an angel, in the form of Miss Irene, entered our lives.  Miss Irene is a deaf woman with a Masters of Education in Deaf Education.  She had just retired from a local school district but not for long.  She became Freddie’s tutor and mentor and continues to be a mentor to him today... to all of us really.  She taught him about Deaf culture and ASL.  This began our transition into ASL.  He started using it more and more until I started to notice that he used it primarily in High School with his interpreter and Miss Irene.  The funny thing is he would still sign SEE to me and even when I would ask him to sign in ASL to me, he would refuse. 

As Fred went off to College in Rochester, NY -- 5 hours away -- I noticed that his ASL signing was getting out of hand! I couldn’t understand him when he was talking to his friends at RIT!  I wouldn’t have that so I enrolled at the local hearing and speech center again, this time to learn ASL.  He has far surpassed my signing skills and truth be told, my finger reading is BAD.  I can fingerspell but when it comes to reading it, I have decided that part of my brain simply doesn’t work!

Freddie has arrived to ASL but my journey continues.  I continue to learn ASL whenever I speak to a deaf person.  There are always signs I do not know and have to ask what they mean, but I think that is the nature of language.  There have been a few times that I knew a sign that Freddie didn’t know... boy, did that make him mad!  So I will continue my journey and every once in a while I get a little nugget, that sign he doesn’t know, just so I can remind him that I can still teach him a few things.

Photo by Larry Mohn

---
Many CCA Kids use sign language and methods other than speech to communicate. If you're interested in learning sign language, most libraries across the country offer free video and online programs. Plus, the internet has dozens of great resources, including videos, self-study schedules, and quizzes for you.

Got 20 minutes? Why not start learning your first 100 signs:

Erica Perry Takes Control: Short, Awesome Documentary

The CCA Bloggers think you will love this short, inspiring documentary about Erica Perry, a New Zealand woman born with an extremely rare condition called Miller’s Syndrome, which affects her physical appearance from top to toe. Having undergone 40 corrective surgeries, Erica's wondering: what’s the alternative? She takes us on a journey, discovering different ways to gain self-confidence and be happy in the skin she’s in.

The full 27-minute documentary is available on AttitudeLive: http://attitudelive.com/documentary/erica-takes-control

Here's a clip.

Confronting & Resolving: One Approach to Bullying

“It is in the whole process of meeting and solving problems that life has meaning. Problems are the cutting edge that distinguishes between success and failure. Problems call forth our courage and our wisdom; indeed, they create our courage and our wisdom. It is only because of problems that we grow mentally and spiritually. It is through the pain of confronting and resolving problems that we learn.” --M. Scott Peck

Confronting & Resolving: One Approach to Bullying

by Sabrina Robineau 

Junior High is an exciting, yet nerve-wracking time in an adolescent’s life. It’s a whole different world that comes with new opportunities and challenges. However, nothing could have prepared me for the challenge that I was about to face on my first day of Junior High….

First of all, I have to note that I was very fortunate in elementary school. I had many friends and everyone knew who I was. Every time I had surgery, I would receive get-well cards from all the classes. School was my safe place; I was sheltered from the stares and teasing. It was my escape from the discrimination I faced in the outside world.

When I was 12 years old, it came time to enter a new school. I was more excited than nervous because I now had independence. Junior High felt so  'grown up.’ I also still felt safe because some of my friends from elementary school would be there. On the first day, we were assigned to our homeroom. I excitedly looked at my schedule and explored the hallways until I found the classroom. I’ll never forget how it felt when I first walked in. It suddenly became very quiet as all the students stopped talking and turned to look at me. I figured “oh they’re just looking because I’m the last one to walk in.” As I sat at a desk, I noticed that they weren't just looking -- they were actually staring at me. Some students were whispering to each other and snickering. I thought to myself “what is going on here? This has never happened in school before!” – what was once a safe place for me, would soon become a place that I hated.

Not only was I stared at in class, but in the hallways as well. I remember that gnawing feeling I had in my stomach as I passed by the lockers. Students would be whispering, pointing and staring. I tried to ignore it and focus on the friends from my old elementary school. I figured the stares would eventually go away. Unfortunately, it continued on for weeks. Finally, I decided “enough is enough!” I couldn't take it anymore. I wanted to feel comfortable at school again. Therefore, I set up a meeting with the guidance counselor. I told her that how desperately I wanted everyone to know that I’m still the same as everyone else, even though I look different. Unsure of what to do, we went to see the principal. She suggested that I go in front of every class and talk about Pfeiffer Syndrome and answer any questions they might have. Some people might ask “Wow, weren't you shy to do that?” – Surprisingly, I wasn't nervous at all. I was so determined to speak up and show everyone the real me. I wanted them to see that there was nothing to be afraid of.

The following day, the principal and I addressed our first class. It was intimidating to face the students, but I kept my head up high and proudly talked about my syndrome and what I’d been through. To my surprise, I got a very pleasant reaction from the students! They were interested in what I had to say and they asked many questions such as, “Does Pfeiffer Syndrome affect your intelligence?” (It does not.) I received the same positive reaction from all the classes. I began to realize that the students were not staring just to be mean … they were only curious. They were faced with the unfamiliar and they didn’t know how to react. They did not have the knowledge to understand why I looked different. 

When I went back to school the next day, my world was completely changed. Instead of getting stares and whispers; I got big smiles and waves, “Hi Sabrina!” – There was no more hesitation or wondering “Why does she look like that?” I made new friends and school became my safe place again.

What would have happened if I never had the courage to speak up? Nothing. Nothing would have changed. I would have continued to be stared at. I would have spent my 2 years at Junior High being miserable. I am so thankful that I had the support of the principal who encouraged me to face the students. Once I educated them about Pfeiffer Syndrome, it was no longer unfamiliar to them. I told the students to never judge a book by its cover because it’s what on the inside that counts!

#surgeryproblems - Top 5 Surgery Essentials

Surgery can be a scary thing. Our cranio kids go through multiple surgeries at all stages of their lives and each procedure comes with a certain amount of anxiety and apprehension. Being prepared can reduce some of the stress and make your hospital visit more comfortable. Today, Liz offers her top tips for being prepared for surgery.

Check back tomorrow for our wrap up of the #surgeryproblems series.

Top 5 Surgery Prep Tips
by Liz Cox

Preparing to go to the hospital can be stressful enough, but when it’s for your child undergoing testing or surgery, that all gets magnified a hundred times over. In our house we make lists to get ready. Lists of bags and lists for what goes in each bag. Lists of clothes, lists of medications, of electronics, snacks, and books. We have refined list making and bag packing to an art. When I was asked if I would write about the top five things to bring with you to the hospital, I knew just what to do. I consulted the stack of dog-eared legal pads containing list after list from years of vacations, grocery trips, and (of course) hospital stays.

#5 Chargers and headphones Keeping chargers and a set of ear buds on hand can make the stay a bit more tolerable for everyone. Headphones not only keep your distractions to yourself, but they can do wonders for blocking out some of the drone of the hospital.  My favorite use for headphones? They can act as a wearable “Do Not Disturb” sign for when you need a few minutes uninterrupted.  Making sure to bring chargers for your electronics can mean the difference between feeling stranded at sea or being well connected to your support network.

#4 Personal Care Bag Clean socks, deodorant and other assorted “foundations” are just a few of the necessities we stash in what has affectionately become referred to as the “Mom Bag.” Even if you can’t squeeze in a full shower, being able to splash some water on your face and freshen up a bit can do wonders for how you feel.  Think of it as a “soft reset” on your day.  The other must have items in the Mom Bag are a quality assortment snacks. Granola bars, dried fruit, and individual packages of almonds are favorites. The protein does wonders to keep you feeling full between meals and stave off the hangries.

#3 Medications It never ceases to amaze me how many questions there are surrounding medications that are clearly in your child’s chart. Bringing them with you allows staff to clearly confirm any medication, prescribers, doses or pharmacy information, and gap any coverage on long rides home. Make sure to stock it up with things for you, too! Having ibuprofen and antacids at the ready are beyond convenient, and it’s one less thing to try to track down if you need it. Double check to make sure you have any daily medication you require as well. If you aren’t taking care of yourself, you won’t be able to take very good care of your child.

#2 Favorite stuffed animal or blanket There is a small troupe of comfort items that are a deal breaker if they are left at home during a hospitalization. They consist of a floppy baby doll version of Snow White, a small Taggie square, and a crochet lap blanket.  For the last five years, these three items have been able to bring security, familiarity, and comfort to some pretty stressful situations. Baby Snow has been in more MRI’s, x-rays, and operating rooms than I can count, always with our little lady in their matching hospital ID bracelets. That doll has been able to be with Tiny in places that it was just not possible for mom or dad to go, and has been the “patient” in many exams, showing our little one that she had nothing to fear.  

#1 Notebook or Journal Questions about care don’t always come to the front of your mind when doctors are rounding or the nurse is in the room with you. Keeping a notebook in the room with you will give you a designated place to write these questions down, and the answers you receive. It’s also a great place to jot down notes about which doctors were rounding, any tests and results, medications, and any reactions your child is having. These can be so helpful to reference if/when your child has to return back to the hospital, and you can flip back and have information on things like what works best for pain management, or how long swelling lasted, etc.

We don’t always have the luxury of being able to plan and prepare for a hospitalization, but when we do, having a few key items can make a huge difference in the stay.

About the Family

Jason and Liz Cox live in Springfield, MA with their daughter, Nova. They knew relatively little about the craniofacial community until they received Nova’s diagnosis of Pfeiffer Syndrome shortly after her birth in 2009.  Jason is a former roustabout, Liz is an avid recycler and Nova is patiently waiting for the spring planting season.

#surgeryproblems - Memes

This week, we're featuring stories about surgery on the blog ... with a twist! Check back each day for a new post. 

In the spirit of April Fool's Day, the CCA Alums & Adults 

created some funny #surgeryproblems memes to share. 

Tweet with us and share your own! You can make free memes here.

Remember to keep it kind, fun, and positive.

Our goal is to flood social media with positivity and humor!

Rose Seitz got us started with a funny story from one of her son's surgeries:
Once when Freddie was in recovery and we came back to see him, the nurse said, “Wow he’s really having a nice sleep... we were calling his name and calling his name but he’s so out that he’s not responding.”  
I said, “Well that’s probably because he’s deaf!” 
- Rose Seitz, CCA Mom

and then we kept going...

And, finally... Joe Brooks, the mastermind behind the meme idea:

#surgeryproblems: Rachel

This week, we're featuring stories about surgery on the blog ... with a twist! Check back all week for tips, insights, and personal stories about surgery. 

Today's post is from Rachel Lance, offering her perspective as Shierry's mom. 

For awhile after Shierry's palate repair, I was pretty focused on how awful it was. But with some distance, I've been able to remember the ridiculous things. The most wonderful/annoying thing about Shierry is that even when she's in pain and exhausted, she's still herself, she still needs to be busy and have fun. 

When you're stuck on a liquid diet and bound to an IV drip, it's difficult to get what you want. But not impossible. 

After a day in which she consumed no calories and rejected a therapy dog, right around shift change, Shierry decided to put on a show. 

She had let just enough water droplets cross her lips for the nurses to be convinced that she would survive without the IV for awhile. Once untethered, she had a grand time pushing the IV stand all around the room. I was so tired, I though I'd fall over, and here was my beautiful, silly girl waltzing with a pole. 

She then decided that we were too boring for her and she crawled to the door hoping to find a better audience. The nurses' station was located right outside the door to Shierry's room. She'd dramatically push the door open, yell "HI!!!" at the top of her lungs to the gathered nurses and techs, and then just as quickly slam the door shut. Then they all started to leave to start their rounds, which Shierry found pretty unacceptable. She abandoned the door game in favor of suddenly darting out into the middle of the hallway at full crawling speed. I'd apologize to whoever was having to step over her and haul her back into the room. She'd break out again. And again and again. It was a pretty uneventful night on the floor, so the nurses weren't, or at least didn't seem to be, too put out by this. They began to expect to see her bounding around and would just laugh and say "oh, hello there, Shierry." 

Eventually, we could tell she was slowing down. But, she refused to get into bed, she so wanted to keep having fun. Instead, she just planked right there on the tile floor, right in the middle of the doorway. Resting, but still a part of the action. 

Check out more posts by Rachel here and here.