Thursday, January 31, 2019

My Superhero: A Mom Reflects On A Child's Strength


Photo Credit: Lauren Sirignano

By Lauren Sirignano

This girl is my superhero. My everything. I think of what she’s endured in 2 1/2 years and I am humbled, proud and brought to tears by her strength.

We are about 2 1/2 months out from another string of surgeries for this beauty. I still find myself asking, why? Why does Althea Rose have to endure so much....

I don’t think I’ll ever have this answer, but what I do know is that she can handle it. It’s not fair, it’s not meant to be fair but Althea has a light and strength in her that I have never seen before.

She is not like anyone else. She is literally a superhero; in every imaginable way. I would not change this girl for anything in the world, I would only take away the pain.

Since Althea was born I have occasionally posted stories about the #choosekindness campaign and the importance of educating your kids to not only be friendly, but to be a friend. The stories I hear through our network are filled with hope, love and kindness, but you also hear some that rock you to your core with dread, sorrow and worry.

We are meeting to discuss Althea’s preschool plans in a couple of weeks and I am so excited for this loving, social butterfly to flourish in school. But if I’m being honest, this may scare me more than her surgeries.

I know Althea, I know her resilience, her strength, her stamina, her soul...however, I don’t know other kids...other parents, what’s being taught in other homes, and when talking about school and Althea, that scares me more than words can convey.

PLEASE teach kindness in your home, challenge your kids to be friends with anyone and to always look beyond what’s “normal” by society standards. Teach kindness now, and never stop teaching it.

Althea is a rockstar and will do well in school, regardless but our village can make it easier by teaching kindness to their littles. Pain comes in many forms, and choosing and teaching kindness over hate will help to eradicate possible pain for kids like Althea. Spread love.

Rare Disease Day Celebrations for February 2019






Editor's Note: Rare disease day is celebrated on February 28th of each year. Rare diseases are defined as "any disease or condition that affects fewer than 200,000 people in the United States." Please join us as we learn more about craniofacial rare diseases. Please mark your calendars for these events hosted by NIH and Global Genes. 

Rare diseases affect an estimated 30 million people in the United States. On Feb. 28, 2019, NIH will host an event to raise awareness about these diseases, the people they affect, and current research collaborations.

Sponsored by the National Center for Advancing Translational Sciences (NCATS) and the NIH Clinical Center (CC),Rare Disease Day at NIH will take place from 8:30 a.m. to 4 p.m. ET in the Main Auditorium of the Natcher Conference Center in Building 45 on the NIH main campus in Bethesda, Maryland. The event will feature interactive panel discussions on collective research models for rare diseases, patient registries, rare cancer research initiatives, and "no disease left behind, no patient left behind." New this year will be a presentation of the first ever Zebbie award for the NCATS Rare Diseases Are Not Rare! Challenge. Other highlights include posters and exhibits by rare disease groups and researchers as well as artwork, videos, networking opportunities and tours of the NIH Clinical Center.

Admission is complimentary and open to the public. In association with Global Genes®, participants are encouraged to wear their favorite pair of jeans. Be sure to follow the event on social media using #RDDNIH.

Prior to the event, on Feb. 22, 2019, NIH will host a Twitter chat on rare diseases from 1-2 p.m. ET. The chat will feature NIH Director Francis S. Collins, M.D., Ph.D., NCATS Director Christopher P. Austin, M.D., and CC CEO James K. Gilman, M.D., as well as representatives from the rare diseases advocacy community. Join in the conversation using #NIHchat and follow @ncats_nih_gov. Learn more at https://ncats.nih.gov/rdd and register at https://events-support.com/events/Rare_Disease_Day.

Monday, January 28, 2019

How to Calm Intense Emotional States? Learn Inside...



By Kara Jackman

I recently shared some ways to manage overwhelming feelings or emotions with the group CCA Alums and Adults group that meets monthly. Everyone, at some point in their life, will need a way to calm themselves from experiencing strong states of anxiety, sadness, and even joy. Below are just a few ways that I turn my frown upside down. Remember: intense emotional states never last long. These techniques will help deescalate their intensity whenever and wherever you are.

Emotional Freedom Tapping

http://niinac.blogspot.com/2011/06/eft-emotional-freedom-technique-tapping.html

This technique uses both the cognitive function of your brain and integrates Chinese meridian points around the body to calm the nervous system, change your thoughts from negative to positive, and to help love and accept yourself. It looks weird, but I swear by it when I am in a pinch. Video links with my favorite tapper, Brad Yates, are below. 

Brad Yates - Tapping for Anxiety


Brad Yates - Tapping for “You’ll be okay” 

“But I can’t do THAT in public!”

Right, ok, true! I got you! If I am in public and stressed you will see me tapping the tips of my fingers, pinky side of my hand, and back of the top ring finger knuckle to process sticky emotional states. It has much the same effect without appearing "weird."

Thought Records - Cognitive Behavioral Therapy Techniques


These are specifically useful for thoughts and deep-seated beliefs like “I am going to be alone forever.” or “I am ugly.” or “I am not ever going to find a friend/mate/relationship.” These are all things we can relate to. All of these loom large in my mind on a regular basis. What are your myths that you tell yourself? Write them down and challenge those myths with the link to the pdf worksheet below.

Download and print out this thought record in this link. Answer the questions at the bottom of the sheet in the columns. This is a great way to untangle your thoughts.


Here is more information about those myths and how to combat them using Cognitive Behavioral techniques. 

Place hands on chest and belly to bring awareness to
your rising belly and flat chest. 

Meditation and Breathwork

I love breathing because you can do it anywhere. I love to practice in my car in traffic. Breathing from the belly, using the diaphragm can be very calming to the nervous system. There are multiple ways to do this. Adriene, of Yoga With Adriene on Youtube, outlines one way during this meditation. I love how calming her voice is. She is so great. I am currently, SLOWLY going through her Dedicate yoga series that began on January 1 of this new year.

Yoga with Adriene - https://www.youtube.com/watch?v=4pLUleLdwY4

Explore other ways of slowing the breathe down by searching for more videos or meditations.

Essential Oils

Essential Oils are great for resetting the nervous system through the sense of smell. This is a cheap set of oils. Ultimately, if you enjoy it, you will want to get some that therapeutic grade oils. I plan on purchasing some therapeutic grade eucalyptus and lavender for my sinuses and anxiety. Throw a few drops in the shower or bath with epsom salts for a spa-like feel at home! Treat yourself!

Here is an excellent, small portable, plastic diffuser that I love. I keep mine running next to the couch.

When you are ready to take the leap, here is a therapeutic grade essential oil brand.
Example: Therapeutic Grade Eucalyptus (...for a pretty decent price) 

Other brands that are considered quality and therapeutic grade are Doterra and Young Living. Buyer beware! These are quite expensive, that said I am told they will last a long time.

Summary 

There is no one-size-fits-all for quelling intense emotional states. Play around with these and other things that you know work for you. I have heard that music, baths, showers, and stuffed animals help too. Focusing on our five senses as ways of input to hack away at the chatter in our brain is the key. How you do it is up to you.

I hope you have found these tips helpful. What are some things you do to stay calm?

Sunday, January 27, 2019

Hugs in the Parking Lot



By Xanthe Alyse Chefurka Faulkner


Editor's Note: This is a repost of a blog entry from September 23, 2015. It resonated so much that we felt we should post it one more time!  The post was originally found on 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 of our amazing cranio moms and dads, and a great example of why family networking is so critically important and huge part of the work we do at CCA Kids. 


Why we cranio families are who we are...
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 [planes of the anatomy of the skull] 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[logist] 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.

Wednesday, January 23, 2019

#ThankfulThursday: Checking in with Atholton High School Kindness Club




Positive Message Boards for CAM 2018

Editor's Note: We checked in with Atholton High School student, Sarah Fishkind, to update us about her school's Kindness Club. Sarah lives in Columbia, Maryland. She learned about CCA because she was born with bicoronal craniosynostosis and attended the recent Annual Retreat in Reston, Virginia. CCA Kids Blog covered the Kindness club in January 2018. I wanted to know what they had been up to during the last year. We were happy to hear that the club is still going strong, doing good, and raising awareness. Without further ado, here is what Sarah's kindness club did in 2018.
CAm Message!

Over the past year, my club has been focusing on raising awareness for craniofacial conditions. We celebrated September as Craniofacial Acceptance Month, and hung up posters all around the school! Check out the pictures below. We also had weekly announcements with either quotes or inspiring messages teaching the school about craniofacial conditions. We have written a bunch of letters to children with these conditions that are either bullied or just want some letters of encouragement! This year, we also created some “well wish chains” that we sent to Cranio Care Bears, for them to send in their packages when children have surgery. We had one meeting where we Skyped and spoke to Peter Dankelson.

Bracelet fundraiser


We raised money for CCA with a bracelet fundraiser in 2018. We created string bracelets and sold them during lunch. We plan on doing a T-shirt fundraiser soon. The orders should be in for the next meeting.


Monday, January 21, 2019

Salt Lake City, UT Friends, See David Roche in Happy Face on Jan 27th & Jan 30





In the Salt Lake City or Park City area? Love movies? Then this blog is for you! The movie "Happy Face," which features people in the facial difference community including David Roche will be screened as part of the Slamdance Film Festival on Sunday, January 27th at 10:30 am and Wednesday, January 30th at 8:00 pm. Both showings will be at Treasure Mountain Inn, 255 Main Street, Park City, Utah 84060.

Happy Face is directed by Alexandre Franchi. The film synopsis from IMDb reads a "desperate to become less shallow, a handsome teenage boy deforms his face with bandages and attends a support group for disfigured people." You can see a trailer for the film here, parental guidance is suggested for adult language and adult content. 

If you are an adult interested in film living in the Salt Lake City area, you should definitely check it out. 


Wednesday, January 16, 2019

Tonight: Tampa Tijuana Flats Meet and Eat Event at 5PM

Children's Craniofacial Association

Show this email at Tijuana Flats TONIGHT!

We'll have food, fun, a craft activity and great conversation at Tijuana Flats Westchase.

Hi Supporter,

Just show this flyer to the cashier when you order! You must use this flyer for CCA to receive the benefit of the donation!
TIJUANA FLATS Location:
9520 W. Linebaugh Ave.
Tampa, FL 33626
See you there! 

Tuesday, January 15, 2019

#WonderWednesday: Angelica Reflects on "Wonder"ful Experience with Utah Students


By Angelica Garcia 

It was an immense joy to come back to Neil Armstrong Academy in West Valley, Utah to talk to the same fourth and sixth grade classes AFTER they read and have enjoyed watching Wonder ☺️ It was great answering more of their brilliant questions. Questions included were from their letters they had sent after our first session at NAA, addressing the value of individuality and self-worth, both sides of bullying, the variety of craniofacial conditions, and truly making connections amidst huge differences. After this live Q and A session, we were by the door greeting the students as they were kind of going out and there was this darling girl that kind of casually made her way between Marco and me. She was out of the line formation wanting to talk. Basically, it was one of those moments where you instantly sense that out of the blue, they want you to notice them for just a little bit for a vital yet unknown reason. With a genuine heart and motherly instinct, I found myself genuinely sharing with her that she is truly beautiful, she deserves to enjoy her life, and things will be okay. I shared my gut instincts with the teacher and she confirmed that the student needed to hear what I had shared with her. It is also one of those moments where from then on, you’ll want to ask yourself, from time to time, how the student (along with everyone else) is doing. This is my purpose and my life mission. I truly love it ❤️ #lifepurpose #teach #sharegoodness #wonder#apertsyndrome 
#apertsyndromeawareness #ambassadors

Ask the Therapist: Feeling Different About A Baby With A Difference






By Jackie A. Castro, MFT
Jackie A. Castro is a licensed Marriage Family Therapist with a private practice in Granda Hills, California www.therapywithcare.com

• Have you just received the news that somethings not 'quite right' with your baby?
• Are you feeling frightened, overwhelmed or numb?
• Are friends and family inundating you with advice that feels useless or undermining?
No matter what the diagnosis, it's normal to have a reaction. Sometimes emotions get the best of us. When these emotions are managing us, rather than us managing our emotions, life becomes chaotic and overwhelming. Emotional reasoning can impair our ability to function with ourselves, our children and our partners.
Managing Your Emotions and Strengthening Your Ability To Think Clearly
Trauma/PTSD You will never forget the moment when you first heard the diagnosis: "Something is wrong with your baby." You might remember your body trembling, your heart racing or gasping for breath. Even recalling that moment today may evoke flashbacks, anxiety or vivid dreams. That's because trauma is stored in the body. Our brains become hyper vigilant in preparing for more bad news. Hearing this new information is definitely traumatic and subsequently you may now be experiencing Post Traumatic Stress Syndrome. Parents need to remember that the worst is probably over. You now have to deal with managing what's on your plates.
Grief Most people associate the feeling of grief with death and divorce. Did you know that there are over forty identified grief experiences? According to the Grief Recovery Model, loss is defined as a "change in a familiar pattern of behavior." Women get pregnant with the assumption that in nine months they will give birth to a healthy, happy baby with ten fingers, ten toes, etc. Then you hear otherwise and your heart sinks. It's normal to feel disappointed, short changed and angry. Because this goes against expectations, this sense of loss usually leads to anger and eventually sadness. These feelings are normal and natural.
Depression, Shame and Guilt Along with sadness comes blame, self doubt and guilt. You wonder what you did wrong or how the diagnosis could have been prevented. While it's perfectly reasonable to look for answers, it's simply unhelpful to blame yourself. Whatever happened, happened. It is no one's fault.
As human beings, we are always looking for a reason. That's why parents blame themselves in order to make sense out of an event that doesn't make sense. Some will
blame the doctor. Most likely, the medical team did the best they could. In truth, some things seem to be out of our control. That's a hard life lesson for all of us but it's true.
Right now, acceptance is what everyone needs. Acceptance from family members, friends and especially ourselves. No one needs to shame you. You did your best and will continue to do your best. Remind yourself that it's okay.
Anxiety Anxiety is fear about a future that hasn't happened yet. The thinking is based on 'worse case' scenarios. Many people feel that worry is beneficial. They believe it helps them find a solution. However, there is a difference between worry and problem solving. Worry is synonymous with obsessional thinking while problem solving is based on rational fact. Sometimes the truth is that there are no concrete answers in the moment. Parents find that hard to accept and anxiety becomes pervasive. This anxiety can effect your ability to function both emotionally and physically.
Marriage Conflicts The birth of a baby with a difference can often make or break your marriage. When you first heard the news, there's hope that the baby might bring you closer together. Your major desire was to form an indestructible team with your partner and work together. You vowed to be each other's cheerleader, support system and confidante. This was well intentioned until you found yourselves losing patience with each other.
The reality is that babies with a difference create stress. Stress is something that some people can deal with and other people can't. When two people are sharing a common stress, it often becomes too overwhelming. The couple reacts by withdrawing from each other or arguing. There are disagreements over medical care, parenting styles and financial issues. The fighting escalates and before you know it, you are now having a troubled marriage in addition to a special needs child.
Seeking Help Many parents try hard to put up a strong front. They don't want to burden family or friends. It's okay to get help. It's actually a good decision.
If friends and family are not available, there are many other resources. There are all kinds of groups for new moms. There are also organizations that deal with families of children Special Needs. Forming bonds with other parents is a good idea. Reaching out will not only help you, but it will also help someone else.
Professional Help While many feel that they don't need therapy and they can manage on on their own, counseling is a great resource when emotions are running amok. Feelings related to trauma and grief can escalate. So can your anxiety and depression. This is bad for you and your baby.
Therapy is a place that provides unconditional positive regard and acceptance. It's a
place you can talk, vent and share your deepest, darkest thoughts. Saying things out loud helps you to listen and tune into yourself. You'll have an opportunity to sort out the confusion and pain you are feeling.
These days, therapy often provides more than just talk. Many therapists, such as myself, offer tools. The tools I generally utilize are comprised of Cognitive Behavioral Therapy along with Mindfulness.
Cognitive Behavioral Therapy is based on the tenant that our feelings are triggered by our thoughts. Worry is often characterized by 'what if' thinking and predicting a future that doesn't exist. Depression is connected to thinking about the past. Cognitive Behavioral Therapy helps you to understand distorted thinking and teaches you how to think rationally.
Mindfulness educates about how to live in the here and now. Mindfulness tools include meditation, deep breathing and progressive muscle relaxation. There's also an effective technique called Grounding which helps to bring us into the moment.
While many parents think they have to attend therapy with their partner, it's not always the case. That's because you might need some individual work in order to figure out your own feelings and needs. Sometimes one therapist will work with you and your partner individually as well as together.
In Summary Be gentle with yourself! The diagnosis was overwhelming and surprising. Like any unexpected situation we need to give ourselves a moment. Take a breath. Educate yourself. Reach out to others. Most of all be good to yourself. Remember you and your baby are worth it.

© 2018 Jackie A. Castro, MFT


Tuesday, January 8, 2019

#WonderWednesday: Jaci Speaks at Yardley, PA Middle School





Thank you Jaci Samhammer for speaking at Charles Bohm Middle School in Yardley, Pennsylvania to a class of 8th graders this past November. The eighth grade teacher contacted CCA to ask for a speaker to visit their classroom after reading the R.J. Palacio book, Wonder. Jaci told her story about living with Apert syndrome. The students in turn asked her many tough questions, but she was able to rise to the occasion and provide great answers. Jaci brought the story of Auggie Pullman to life. Here are some photos from her classroom visit. 

Teachers, scout leaders, and other group leaders can request a CCA speaker by contacting Outreach Director, Khadija Moten at khadija.ccakids@gmail.com








Monday, January 7, 2019

30 Stories 30 Faces 30 Years: Zoya Bobov




Meet Zoya our beautiful granddaughter. As Nana, I’ve watched this family meet every health challenge head on. Pfeiffer syndrome certainly has been on the forefront, but definitely does not define our warrior princess. It’s something she has and will manage her whole life, but Zoya is Zoya. She’s strong, fun, loves her big brother and loves to play. Her giggle lights me up every time. We are blessed.”     -Sandy Powers, Grandmother to Zoya Bobov



Zoya and some of her favorite books!
Zoya Bobov is an adorable 16-month-old girl that lives with her parents, Desirae and Vladmir, and older brother Ivan (3 years old) in Seattle, Washington. Zoya was born with Pfeiffer syndrome in August 2017. Her mother, grandmother, and father all agree that she is a “happy little girl” that always has a smile on her face. The Bobov’s say they love exploring nature and are a “super outdoors family!” Most recently the family hiked up Mt. Rainier to celebrate New Year’s Day. Zoya loved the snow! When Zoya finds herself back indoors, she loves spending quality time with her older brother, Ivan, to read books, and scoot around on the floor to prepare for her next outdoor adventure.


Desirae and Zoya on a New Year's Day hike



We love featuring Zoya after her Nana wrote us this submission to our 30 Stories, 30 Faces, 30 Years celebration. Thank you, Zoya, for being one of CCA’s newest stories!

L-R Zoya, Vladimir, Ivan

Thursday, January 3, 2019

Moebius Syndrome Awareness Day January 24th





Moebius Syndrome Awareness Day is January 24th. Are you ready? Not to worry because Moebius Syndrome Foundation has everything you need to raise awareness, share your story, and learn more about this facial difference. 

There are a few regional events to check out too. Most notably, a group of people in Houston will be hosting an awareness event on Saturday, January 26th. Learn more about this event and more on this webpage.


Wednesday, January 2, 2019

Dallas Full Pscycle Event Aims To Raise Cash For CCA Kids on Jan 12th




Full Pscyle Dallas will host one of their signature spin cycle classes to benefit CCA thanks to Keegan Strogatz on Saturday, January 12th at 10AM. Keegan's cousin in Dallas wanted to help raise funds for kids like Keegan. This event is a great way to get a jump start on your New Year's resolutions and give back to a great cause too. 

Keegan Strogatz inspired this event. He is a soon-to-be one year old, Southern Californian born with Treacher Collins syndrome. He is one of the newest members of our national family. Brooke Strogatz, Keegan's mother, is excited about the event that Keegan's cousin, Shelby, is spearheading in Dallas. 

Full Psycle's mission is similar to CCA in that they hope to create a thriving community of people that are dedicated to feeling great both inside and out. The cycle studio takes the spin class experience to the next level by incorporating the latest fitness tracking technology, luxurious surroundings, and the most comfortable bike saddles in the business. They also give back to local and national nonprofit organizations like the American Heart Association and the Susan B. Komen Foundation. 

If you are in the Dallas area on Saturday, January 12th please join us at the studio located 2650 N. Fitzhugh Ave. - Suite 120,Dallas, TX 75204. Class begins at 10:30AM and concludes at 11:15AM. After, there will be time to share refreshments with new friends and learn more about the work Children's Craniofacial Association does for kids like Keegan. 

Sign up, lace up, and register at the Facebook event page today!