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!
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

• 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

Monday, January 7, 2019

30 Stories 30 Faces: 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