Happy Thanksgiving

To all of our CCA Family, our "kids," our families, our volunteers, our donors, our medical teams, our nurses, our parents and our friends ... We are grateful for your support. 

from here

Media Monday: Remembering John Moulton

Sadly, one of CCA's beloved family members recently passed away. On today's Media Monday, we would like to honor John E. Moulton and the life he lived. John's music and inspirational life will forever leave an imprint on the hearts of CCA families that knew him. Our deepest sympathy remains with John's family.

Here's a picture of John with one of our youngest members, little Lola of Lola's Voice. 

I will always remember this touching moment at the 2013 CCA Family Retreat 

and John's strength and courage leave a legacy for our community. 

 

With Sympathy We Remember.

Grateful Sunday

from here

The "Ugliest" Word & Social Media

Ahhh…Facebook. How I love to hate you.

Now, first a bit of full disclosure: I am an avid user of social media and some might say an almost pathological FB Poster. I imagine many have “unfriended” me given my prolific and at times picayune status updates. But, as the father of a child with craniofacial differences, the unfortunate posting below led me to the realization that social media will only add to the enormity of the challenges our “special” kids face.

Think before you post.

The oddity of this whole thing is that Nathaniel, our son with TCS, never even saw this ridiculous cartoon. But his Grandfather did. A description would help: My dad is and will forever be a “MAN’S MAN” at 6’ 4” and well over 200 lbs. Bearded. Even at age 69 his hands remain callused from 30 years of hardcore construction work. His body is somewhat ravaged by a life spent working to provide for his family. And I mean real work…not the stuff I’m blessed to do because he afforded me a better life. Paradoxically, this Man’s Man carries around a Chihuahua name Daisy. But more importantly, his love for his grandson Nathaniel knows no bounds. He’ll never show it, but I know at times this love brings him to his knees, like when he can’t take away the pain and struggle that facial differences cause his Grandson. He knows he can’t make the surgeries go away. He knows that some people will hurt Nathaniel despite our best intentions and this knowledge must cut him to the core.

"UGLY!" 

So for a second—just one second—try to imagine his pain when one of his “friends” posted the above cartoon. Imagine his pain when others “liked” it.

Ever since the day Nathaniel was born that word sends a fire raging through me. And to think it now causes my father and the rest of my family such pain, I’m left wondering: How do I—do we—react? Should I fire back on Facebook with some missive on the pain that word causes? I wonder are they even talking about kids like ours or even considering them?

And it’s not just kids like ours; it affects others outside our community. What about the Mom or Dad whose unaffected child just isn’t handsome or pretty enough as deemed by society? Is this post about their kid? What about the kids struggling with adolescence and concerns about their image? Is the post about them? In some way our craniofacial kids can handle this stuff better than most, but what impact does this word UGLY have more broadly? I can’t even begin to imagine. Did the creator of this meme even for a second, one single second, consider the pain he or she was causing?

This social media situation is all made more ironic by Nathaniel’s appearance on the NatGeo program Taboo. Now made even more prescient given the producers chose to title the episode "UGLY." The point of that show, and I suppose my current rambling, is the ongoing sentiment that anything different is UGLY.

Dictionary.com currently has the following definition of the word UGLY:

·         very unattractive or unpleasant to look at; offensive to the sense of beauty; displeasing in appearance.

But I would like to propose a new definition of the word UGLY:

·         the complete inability to see the beauty in everyone and everything;

·         an insensitivity to anything different or outside the norms of the conventional;

·         to act in a way that shows complete indifference to the feelings of others.

The power of social media is enormous and at times its power has wonderful results. One only need witness the “CHOOSE KIND” movement and the impact R.J.Palacio and the book Wonder has had around the country. But, with great power comes great responsibility. Unfortunately, we see far too many instances of social media’s power causing great pain and sorrow. So, as the father of an amazingly beautiful boy I hope and pray that we have the bravery and fortitude to respond to “UGLY” when we see it.

Collectively let’s make a promise to one another…

LET'S PROMISE...

As we continue to “CHOOSE KIND” we will remind the world the pain their definition of UGLY causes. 

And as we approach Thanksgiving, let’s be ever more thankful we know the true meaning of the word.

--Russel

Today's post is from Russel, a CCA Dad from Matthews, NC. Russel and his wife Magda have two sons,  Nathaniel and Jacob.

Media Monday: The Ewing Family

This Media Monday post comes from Goshen, Indiana. The Ewing family had a wonderful story published in their local news outlet, the Goshen News, spreading awareness and acceptance during Craniofacial Acceptance Month. Thank you Ewings! Your beautiful story encourages many who find strength and refuge in their strong faith.

Ben, Jeannie, Felicity, and Sarah Ewing

From the article:
It’s a different journey than that taken by other parents they know, as the Ewings’ days are consumed with doctor’s appointments, testing, dealing with social service agencies and trips to Riley Hospital for Children. All this provides a lesson in patience and humility, the couple said.

“We may do different things on weekends but the goal is the same — to have a closer family,” Ben said.

During this Craniofacial Acceptance Month and beyond, the couple most wants others to realize “the simplest thing — to look beyond our physical differences and look at the heart of a person. Every soul is unique with gifts and talents,” Ben said.

“Don’t be afraid or uncomfortable with someone who’s different. Make eye contact,” Jeannie urged. “Stop and see the person — the human within.”

- See more at: Goshen News Online

Welcome to the CCA Family, Sarah!

Grateful Sunday: 7 Cardinal Rules of Life

I can't find the original source for this graphic, so I decided to simply pay it forward.

Friday Remix: The Face to Face Project

The Face to Face Project from Carl Weiss on Vimeo.

Face to Face is the first program of its kind in the United States. Studio Incamminati artists, in partnership with the Craniofacial Program at The Children’s Hospital of Philadelphia painted intimate portraits of four patients with craniofacial conditions to help them see themselves in a different light. The portraits, which premiered November 1, 2013 at The Children’s Hospital of Philadelphia, will be permanently displayed at the hospital.

The location videography was produced and edited by Carl Weiss of Weiss Communications. With the exception of a small set of stock video clips (eye opening, NYC street scenes, couples looking at a smart phone and in a restaurant, etc.) all content was captured on SONY NEX-VG20 cameras with Rokinon SONY E-mount cine lenses and was edited in Final Cut Pro X.

Showcase: Jaci Samhammer

Jaci wearing bright green with Jill, Char, and Annie - our CCA Staff!

My Name is Jaclynn Samhammer.

I Have Apert Syndrome and I am 27 years old. I love to dance and hang out with friends. I am one busy girl!

I work, I go dancing, and I am involved with the American Legion and The Elks Club. 

Yes, I had a lot of struggles in my life: going through 30 operations, dealing with teasing being accepted in life, but when I started going dancing at the Legion and the Elks, I felt happy and safe there. Everyone is really nice and they accept me for who I am -- the way it should be! I love how my life is right now, but I do wish I could earn enough money to live on my own. Other than that life is good -- so just keep smiling  and live life to the fullest!

-- Jaci

Educational Advocacy: Part Five

CCAKidsBlog.org is pleased to announce that Paula Guzzo, CCA Board Member and Past Chair, is writing a series dealing with Educational Advocacy. This is the final post in the series. Please also check out Part One, Part Two, Part Three, and Part Four.

Record Keeping During the School Years

Maintaining good records in your home file is a time saver that enables you to be a more efficient, organized advocate on behalf of your child. You should keep your own copy of all IEPs, psychological reports, test scores, correspondence with school personnel, report cards, schoolwork examples, lab results, list of medications, etc.

Record maintenance during the school years can be cumbersome. Initially, I thought that I needed one binder for Scott’s homework, one for IEPs, another for communication, another for evaluation reports, one for medical reports, etc.  You should have seen me in case conference committee meetings taking up all of the table space with so many binders spread out in front of me. Trying to find what I needed wasn’t efficient as I sometimes tried to access three or four binders at one time!

Thanks to the InSource (www.insource.org) recommendation of keeping everything in the same binder, my record keeping became greatly streamlined. Thinking it through, one binder makes sense.  You generally know the time frame when things/events occur.  When you need something, you can thumb through the binder around that particular time and readily find what you’re looking for.

It’s easy to get started being organized. Buy:

1.     Sturdy large binder (3” is manageable)

2.     Sturdy 3-hole punch

3.     Page protectors

Put everything in that sturdy binder, with the most recent on top. If there are reports or schoolwork that you don’t want to 3-hole punch, slip them into a page protector before putting them in the binder.

Use a pencil to lightly write the date on the lower right corner of everything that goes in the binder so it’ll be easy for you to find dates when you start looking for something.

When you need to take your records to case conference committee meetings or to doctor visits, everything is contained in the binder that is ready to grab and go. Binders are convenient to store on a shelf or in a file drawer.

WARNING resulting from personal experience: If you have a young child, do not think you can keep track of everything without some type of a record keeping system--years roll by and the papers pile high!

Record Keeping During Life After School (Adult Life)

As you prepare for your child to transition from school to adult life, it will simplify your and his/her life if you continue to keep records together in a binder. As your child applies for housing, college, scholarships, medical services, Medicaid, insurance, Social Security benefits, etc., you will have easy access to important records. When I worked as the Transition Coordinator for the Sycamore Services Transition Initiative, we provided the following list to families. You, undoubtedly, will have some of your own to add.

Legal Records

·                    Social Security card

·                    Social Security number of both parents

·                    Birth Certificate

·                    Guardianship Orders/Power of Attorney

·                    Copy of a Will

·                    Selective Service Registration Card

·                    State Identification Card

·                    Driver’s License

·                    Marriage Certificate for parents (if step-parents involved)

·                    Passport

Financial Records

·                    Bank Accounts

·                    Insurance policies

·                    Information regarding aall other resources

·                    Pay slips, tax returns, information regarding student income

·                    Parent income tax return statements

·                    Information about parent’s income/resources

·                    Motor vehicle registration

·                    Current Social Security award letter

·                    Residential facility admissions documents

Medical Records

·                    Medical/Clinical Information

·                    Names and addresses of current doctor(s)

·                    List of current medications

·                    Names and addresses of social service agencies providing supports

·                    Health Insurance policy numbers/cards

·                    Name/phone number of emergency contact person(s)

·                    List of previous surgeries with type, date, doctor, facility

Educational Records

·                    Copies of progress reports

·                    Report Cards/Transcripts of grades

·                    IEPs and for each school year

·                    Copies of evaluations such as speech, psychological, physical and occupational therapies

·                    Copies of all release forms including community based and work training permission forms

·                    Transfer of information to adult agency forms

·                    Resume listing addresses, phone numbers, work experiences, job responsibilities, dates worked, accomplishments and references   

A final thought: If you are computer-savvy, your ‘binder’ can be on your computer in appropriately named folders, preferably in a master folder that has links to each file (use Windows shortcuts or Mac aliases).  For example, you might have folders named “IEPs” or “Parent Reports”, etc. with the file names indicating the child and date (e.g., Scott’s IEP 2013). Unless the document owners will email you a copy (as a Word doc or pdf), this will likely require that some documents be scanned and saved as pdf’s or images. By using your computer, you may be able to find things even faster without having tons of paper to sift through. 

--Paula

If you enjoyed this series, please let us know in the comments! We love feedback!

Media Monday: Cher on #DWTS

Check out Cher on Dancing with the Stars on Monday night and tweet with us! #DWTS @CCAKidsTweet

Grateful Sunday: VUCA

VUCA is an idea straight from one of my business classes that I like to remember when practicing gratitude.

VUCA stands for a situation that is volatile, uncertain, complex, and ambiguous. In a recent lecture, I heard this term and the key message was "in VUCA you can find opportunity." If you find yourself in a VUCA situation, remember this is the area of opportunity. Be flexible and be open to change and look for the opportunity within the uncomfortable situation.

I got this awesome picture sent right to my inbox from PhotoYOLO. It's like my ZENbox.

Friday Remix: Cameron Richard Opens for The Ready Set

Today's Friday Remix is an exciting story about Cameron Richard, a 13 year old born with a cleft palate. Cameron's story is inspiring and the coolest thing? He's going to open for The Ready Set tomorrow in New Orleans. Good luck Cameron! We are cheering for you!

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