Monday, April 6, 2020

Masks For All: Cover Your Nose and Mouth To Prevent the Spread of COVID-19


By Kara Jackman





The Center for Disease Control recommends that people across the country wear masks to protect themselves from contracting COVID-19. Unfortunately, not all the members of our community are able to wear the typical mask outfitted with elastic straps that wrap around the ears. Kids and adults in our community wear hearing aids, BAHA hearing aids, have prosthetic ears, or do not have ears at all. Masks must be accessible to all whom need them during this worldwide pandemic. Some sort of face covering will be part of our every day lives moving forward, especially when in mixed company outside of our homes. 

In this video, I demonstrate one face covering that ties at the back of the head with two sets of thin strips of fabric. Both strips of fabric tie behind your head, easily lacing together like draw strings. 

There are other options, too. You can purchase a prefabricated mask that loops over both ears, and then take paper clip, string, ribbon, or a piece of elastic and lace it though the existing ear loops to create tension and support around the back of the head.  This tension will secure the mask to the back of head, and keep it in place. Ear Community posted on their Instagram page an image of their mask hack using a paper clip. Another option is a strap placed at the back of the head, outfitted with two buttons to hook the ear loops around. Check these options out below. 




I hope this helps people. Moreover, it is my desire to never leave anyone unprotected. Wearing the mask does not mean you can, or should, go out if you at high risk of contracting COVID-19 and not surviving it. Check with your doctor before wearing a mask. Listen to their advice about what to do. This video and blog post should not replace advice from your doctor. 

Please remember to wash the mask in hot soapy water, and then wash your hands before placing the mask on your face. Always be as squeaky clean as possible before touching your face. When you are out and about, do not touch your face, or adjust the mask without a sterile, clean barrier between you and the mask. This barrier could be a fresh, clean paper towel, a new nitrile glove, or a new piece of facial tissue. 


We are in this together. No one will be left behind! We all deserve access to the things of life that we need to survive and thrive. 

Monday, March 30, 2020

Emotional Regulation: What The Body Can Tell Us About Our Feelings



Emotions are running high for all of us amid all the disruption caused by the COVID-19 pandemic. Up is down, down is up, and everything about our lives is different. All that change means many emotions are popping up. Now is a good time to step back, take a breath, and identify the emotions we are experiencing. Our bodies, minds, and behaviors are filled with information about what we are feeling.  

Once we tune into 
how our body feels, 
what are thoughts are, 
and what we are doing, 
we can harvest information about our emotions. 

In this blog, we will focus on the way your body experiences emotions. 

In subsequent blog posts, I will focus on how feelings effect thoughts and behaviors. 

Parents, caregivers, family, and friends share this information with your children. It is critical that you 1) use these skills to stay calm, and 2) model these skills in front of your children. This will benefit both you and everyone around you. 

But where do I begin? 

Stop, Walk, and Tune In To Your Body

First, stop whatever you are doing. 
Step away, go into another room, so you can grab some time alone with no distractions. 

Take some nice deep breaths: in through the nose, and out through the mouth. 

Be sure to breathe into diaphragm or stomach, not the chest. The chest should be the last part of the body to rise when breathing properly. 

Now, focus on each part of your body, starting at the top of your head, moving down. Spend some time on each body part, noticing tightness or a holding of tension in different parts of the body. This is called a body scan. Listen to this brief, 5-minute meditation that will take you through each body part.

 


What Did Your Body Tell You? 
Where do you feel tension? 
Do you feel a tightness in your neck? back? stomach? head? 

Make a note of it on a piece of paper, or draw a stick figure and circle the parts of the body where your feel tension or unease. Your body is providing vital information about your feelings. 

By way of example, when I am stressed, anxious, or scared my neck, upper back, and stomach all get tight. My breathing becomes shallow and short. When I am sad, my throat tightens and the area around my heart hurts. How is your body? If there are areas of tension they could signal stress, anxiety, or sadness. 

Emotional Decoder 
Now look at the diagram below.  It kind of looks like the pain chart that the doctors use in the hospital. On a scale from 1-5, 1 being content, and 5 being scared or angry.  How are you feeling? Look at the images and find the one that matches what you are feeling best. (The descriptions can be helpful to put your feelings into words.)  




I Know What I Am Feeling, Now What? 

Did you identify an emotion? Cool! What do I do? 

If you are happy, or feel okay you can keep doing what you are doing. However, you might want to keep checking in with yourself once or twice an hour to see if things change. Sometimes setting an alarm on your phone to remind you to check in helps. As the day moves along, some person, place, or thing might bother you, throwing you into a sad or anxious state. 

If you are feeling sad, or angry, there are actions you can take to move yourself into "ok," "happy," or "confident." 
Take some more of those deep breathes. 
Deep, long, slow breathes will help calm your body down. 
Then find an activity that you find soothing. 
You could color, read, sew, listen to music, watch TV, write, exercise, or search for funny memes. 
You might not like any of these ideas, and that is okay. 
Check out this website for more ideas. 
Print it out and circle the ones that sound appealing to you. 

Practice Will Reveal Patterns
Your body reacts to our emotions. Sometimes these changes are subtle, unrecognizable even, but with regular practice, you will discover patterns. 

Keep a record of these experiences by writing about them in a notebook, or by drawing a quick stick-figure, circling the areas that get tense, tight, or otherwise feel strange. 

Finally, tie those physical sensations to what you are feeling, and address them with slow, deep breaths, and pleasant activities. Keep doing this each day, and you will become better at recognizing and managing your emotions. 


Friday, March 27, 2020

Yoga Fundraiser for CCA Kids

Thanks to the quick and thoughtful action by CCA Mom Suzanne Ashby, she teamed up with her friend and yoga teacher, Jen Cavalieri, to create a timely yoga fundraiser for CCA Kids! 
Thank you to Suzanne and Olivia for thinking of CCA during this difficult time. 
So - clear your mind and stretch your muscles with some yoga! Thank you!

Practice yoga with your family in the comfort of your home and support a good cause! Each online class is $10. For every class purchased $1 will be donated to CCA.

To register: Visit TulayogaNJ.com to View Class Schedule: Click the drop down that says classes- Click on Aberdeen Schedule

You will see the class listed in MINDBODY as Tula Yoga at Home or Tula Barre at Home . We have a combination of Yoga classes for all levels as well as Barre Fitness and Dance Classes. See below is a description of classes.

Click the sign up now button and proceed to create a account and enter your information.
When checking out choose : CCA Kids Drop in

You must be registered by 9am ET the day of the class. We will email you the link to our YouTube page by 9:30am ET that day. You can do the class ANYTIME that is convenient for you from your phone, laptop or on your TV!! The link will be active for 24 hours.

Class Descriptions:

Hatha Yoga- This class will focus on the breath, alignment, and is perfect for the practitioner who prefers time to move slowly in and out of each posture. This class is designed to create strength, flexibility and balance for both mind and body . This class is great for beginners as well as more experienced students.

Vinyasa Yoga – This all levels Vinyasa Flow class is a complete mind-body workout. Focusing on movement integrating breath, awareness, and alignment you will build strength, focus, flexibility, and balance.

Gentle Yoga– Therapeutic Yoga blends restorative yoga (supported postures), gentle yoga, breath work, and guided meditation techniques. This is a great class for those who need something gentle yet effective; if you have had recent surgery, chronic pain, or just need to work more slowly. This class is great for all levels.

Yoga Sculpt & Tone– A combination of Yoga and strength training this class is designed to sculpt and tone every major muscle group, build strength, flexibility, and rejuvenate the entire body. Free weights will be used to intensify the practice, add definition and tone the upper body. Burn calories, build healthy bone density and leave feeling calm, strong, and energized for the day.

Yin Yoga- Yin Yoga is a more meditative approach with a physical focus that is much deeper than most yoga practices. Here the practitioner is accessing the deeper connective tissues and fascia. Many of the long- held seated postures focus on areas that encompass the hips, legs and spine. Yin yoga is a wonderful way to maintain flexibility, circulation and focus. Great for all levels.

Tula Barre: Our Signature Barre class is a total body workout done to energizing music combining Barre, Yoga and Pilates. This class blends the most effective exercises in sixty minutes to burn calories and tone your entire body. We will use weights, resistance bands, and other props to sculpt your arms, abs, and create long lean muscles. Yoga and Pilates will be added to the routine to increase core strength, flexibility, posture and balance for a complete mind- body workout. You will leave feeling longer, stronger, and invigorated after each class.

Dance Sculpt: Dance sculpt is a synergy of movements and music created to shape and tone your body. This class was carefully designed by Jessica Sosa, using her extensive dance background to choreograph a fun and effective routine that includes building strength, flexibility, core , and balance. No dance experience needed. Express yourself with movement & build the body you have always wanted!
Olivia Rae Vargas inspired this fundraiser! 

Olivia and Jen

Olivia with Denise, yoga teacher



Tuesday, March 24, 2020

Start With Self For Mental Health: Resiliency Tips For Mind, Body, and Soul



Photo Credit: VectorStock.com

By Kara Jackman

How are we doing? I mean really doing. This is a surreal time, but as I have been reminded by many in our community, we have made it through tough times before. Thus, we truly are uniquely prepared for this time in our nation’s history, battling the COVID-19 pandemic. 


I am sure you are wondering, how do we manage this seismic change to our lives. I’ve read much about how to handle everything from working from home to home schooling. All of which is well and good, but true work must begin within one’s self: mind, body, and soul. But what does that look like? Here are some suggestions. 


Calming the Mind 

I originally titled this section “Clearing the Mind,” but quickly realized that is an unrealistic expectation even under normal circumstances. Our mental health is everything. We must be able to calm the racing thoughts and tough emotions, so that we can execute all the tasks that make up each day.  Where do you begin? A friend suggested on Sunday morning that I begin my day with meditation, journaling, or prayer. I must say I did all three and it really helped. I also wrote a “to do” list. All of it took less than 10 minutes. It really organized and clarified my priorities. I was more productive and self-assured, too. For meditation, or mindfulness practices, please check out the Calm app, Fitbit’s 90-day FREE premium membership, or check out the offerings on Youtube by searching for “guided meditations.” I would suggest ending your day in much the same way, too. There is something so vital about these transition points, out of and into, restorative sleep. 


Move!


The other important element for boosting our mental resolve is through physical movement. I will not be so bold as to say the dreaded “E” word, exercise, because I hate to lose a captive audience. That said, committing to some physical movement that works best for your body is vital. Go for a walk, preferably outside, with your family, while honoring the six-foot distance that we must maintain for social distancing. Yoga, or just simple stretching can help, too. Tai Chi and other martial art forms can be soothing, too. Here’s a couple videos from youtube to get you started.






With the gym closed, I have turned to the streets to run. I am by no means fast, but I make it fun, listening to music that I love, taking pictures of the interesting things I come across on the road. What will you do? 


Love The Skin You're In



If the thought of physical activity freaks you out, don’t worry. There are other ways to stimulate your physical body to bring about the positive mental health you need during these trying times. Take care of your skin. It is the largest organ of your body.  Watch this six minute video about how dry brushing and applying body lotion or oil can calm your stress response. You can perform dry brushing on yourself, your children, and even your pet. Additionally, dry brushing can be helpful for those of us that have sensory processing issues. And if not for all those reasons, who doesn’t love to pamper themselves?


Hug Yourself
Go ahead, it’s not weird. We need human touch, to heal, feel settled in our physical being. But we are told not to touch others, so we can’t do this one, right? No! You can hug yourself, which in this study was shown to reduce physical pain. In fact, you could probably do this with others while maintaining the mandated six-foot distance. There is also a move called a hookup, used by some teachers and occupational therapists for individuals with Attention Deficit and Hyper Activity disorder. Learn more about it in this article

Standing Hookup

This is how you can perform a hookup. Sit, stand, or lay down. Cross your legs. Stick your arms straight out, then cross your wrists one over the other, and face your palms together. Then interlace fingers and swoop your arms down and into your body, hinging at the elbows. Your hands will land just below your chin.  Now breathe deeply, from the abdomen, in through the nose, and out through the mouth. During a time when we really cannot hug others, I find these so very calming. Focus on loving-kindness in your mind while you do the breathe and body work. You will find yourself more grounded in the here and now. 


I hope you take these suggestions to heart. Please consider implementing some or all of them in your daily lives, while experiencing these extremely stressful times. 


More resources for Families and Individuals
While geared toward kids and education, I found this link to provide very helpful advice on stress reduction, nutrition, and caring for our bodies.

https://www.actionforhealthykids.org/resources-for-schools-and-families-during-covid-19-coronavirus/

Monday, March 23, 2020

#ChooseKindTuesday: Abby & Melissa Visit the East Catholic







Melissa and Abby McGowan visited East Catholic School in Pittsburgh, PA to share their ChooseKind message with 120 students ranging in ages from nine to thirteen. Abby shared what it is like to live with a facial difference. Mom, Melissa, shared what a delight it is to have a child like Abby for a daughter. Melissa and Abby talked about Abby’s birth, surgeries, medical appointments, which set her apart from many kids., but they also talked about  aspects of her life that make her just like every other kid her age. She loves school, reading, and playing games with her three sisters. She cooks and crafts with her mom.

An East Catholic School teacher and organizer of the event, said of the McGowan’s presentation, “Having Abby take part in the talk was a wonderful part of it. The students and faculty thoroughly enjoyed every single part!  The presentation was very enlightening and informative! We were blessed to have been able to have Melissa and Abby come and speak to us. The children were so touched by them, they want to have a dress down day to donate the money to CCA!”



Thank you East Catholic for hosting Abby and Melissa. We are so grateful that we can count you as one of our #ChooseKind schools. Keep up the great work. Be kind, choose kind, the world needs more of it. 



Thursday, March 5, 2020

#ChooseKindTuesday: Dankelsons Visit SoCal Schools For CCA


Peter, CCA Kid, and Dede Dankelson, CCA Mom and member of the board of directors, recently finished up a week-long trip in Southern California schools spreading their Amplify Kindness message with hundreds of students. CCA sat down with them to talk about the genesis of the work they do, what they share with the students, how it has evolved, and why they keep going back to SoCal for CCA. 


Thanks Peter and Dede for all your great work over the years!

Del Mar
Del Mar

Who initiated first contact with these schools? 

It really got started by Bill Mecklenburg and the Coto de Caza community. They hold multiple fundraisers each year, and CCA was selected first for the "Coto Classic Golf Tournament" and then the "Coto for the Cure" tennis tournament for the last two years.  With their financial investment through these fundraisers and the leadership of Chris Jones, teacher and English department chair at Ladera Ranch Middle School, the partnership was solidified with the schools.  Chris is now retired, but we've continued working with other teachers in the district for the past two years.  The money raised from those fundraisers funded classroom sets of books for all 6th grade literature classes in Capistrano Unified School District.  CCA also sends Wonder curriculum materials. From this community, it allowed us to refine our programming and see it build successfully over several years. 

How many years ago was that? 

We've been speaking at CUSD for 5 consecutive years. 
Del Mar
The two schools we've been to for five years is Ladera Ranch and Don Juan Avila.  We've been to nearly all 14 of the middle schools at least once.

What keeps you connected to these communities and this part of the United States, beyond its beautiful weather?  

We love visiting all of our CCA friends in southern California!  And, Peter loves going on "guitar safari" in Los Angeles.



Aliso Viejo

Do the students remember Peter?  

Well, it is a different group of students every year. We speak with the 6th graders every year, so it's a special assembly just for that grade. I am sure they remember him as they graduate into the next grades and I hope they remember and take the message with them.

Aliso Viejo


What are their impressions of him?  

They love meeting Peter and hearing about his prosthetic ear and hearing aid.  We also show them a trach and a feeding tube and explain they're just a different way to eat and breathe.

Art made by Shore Cliffs students
for Pete and Dede's visit


How has your presentation changed over the years?  

Our original presentation focused mostly on comparing Peter's craniofacial syndrome to Auggie's (bringing fiction to life) and promoting "Choose Kind" to others.  Our message is now about "Amplifying Kindness" to both others and yourself.  We strive to teach kids how to be confident, so they have the courage to be kind.  We want them to embrace their differences and have the confidence to pursue their passions.  Peter is a good example of that.


Peter and friends at Don Juan Avila
Middle School

#ThankfulThursday: Texas A and M Students Band Together To Support CCA Care Packages




Students from Texas A and M University from the Rare TAMU and Delta Zeta sorority came together to collect items for the care packages we send to children in the CCA community having surgery. The two groups came together to host this drive for goods after reading our request for a need for care package supplies. We are so very grateful that all were able to come together for our kids in such a profoundly generous way. Sanam Maredia, a representative from the TAMU Rare, expresses her thanks for "allowing us to take part in these donations. We were happy to help."  


Wednesday, February 26, 2020

Research Datasets Available for Medical Researchers, Geneticists Via Gabriella Miller Kids First Pediatric Research Program

Editor's Note: Our friends at the Gabriella Miller Kids First Pediatric Research Program has an exciting announcement about newly available datasets for researchers. With more eyes on these datasets, we can get closer to causes for genetic, craniofacial conditions and syndromes. Take a look, share with your medical providers to see if they may have a research interest that might fit these datasets. Raise awareness through access to this wealth of raw data collected by researchers across the country. 




The National Institutes of Health’s (NIH) Gabriella Miller Kids First Pediatric Research Program’s (“Kids First”) vision is to alleviate suffering from childhood cancer and structural birth defects by fostering collaborative research to uncover the etiology of these diseases and supporting data sharing within the pediatric research community. The program continues to generate and share whole genome sequence datasets from cohorts of children affected with these conditions (https://commonfund.nih.gov/kidsfirst/x01projects).  Researchers can access, aggregate, analyze, and share these data as well as associated clinical and phenotypic data through the Gabriella Miller Kids First Data Resource, which includes the public-facing, web-based portal, the Kids First Data Resource Portal(link is external), and cloud-based workspaces.
NIH has a strong interest in encouraging the use of this dataset to accelerate genetic discovery and ultimately inform clinical practice and improve health outcomes.  However, many excellent grant applications that involve utilizing Kids First data go unfunded.  Additional avenues of funding through collaborations with non-governmental organizations can amplify the value of these data and improve pediatric preventative measures, diagnostics, and therapeutic interventions.
To this end, the organizations listed on this website (https://commonfund.nih.gov/kidsfirst/secondchance) have agreed to be contacted by researchers who have applied for NIH grants (such as the Kids First R03) to analyze Kids First datasets, and whose applications were reviewed through the rigorous NIH peer review system, but who ultimately were not funded.
If you represent an organization that would like to provide a second chance to Kids First applicants or you are an applicant with questions about the Kids First Second Chance, contact KidsFirst@od.nih.gov(link sends e-mail).

Monday, February 24, 2020

#ChooseKindTuesday: Jenna Visits Massachusetts School




By Jenna Ottow and Kara Jackman 

Jenna Ottow visited Dexter Southfield School in Brookline, MA to share her #ChooseKind story to all 4th grade classes. She talked about the surgeries, school experiences, and the positives and negatives of growing up with a facial difference. Dexter Southfield's motto, 'Our Best Today, Better Tomorrow' was quite apparent in the audience of 40 students that listened attentively in the small auditorium  In preperation for their 'Diversity Day', the students had been were reading stories demonstrating diversity and the ability to overcome it. Students shaed how the book “Wonder" stood out the most because they could relate to Auggie and his fellow students as they were also in school. Jenna shared how being different taught her to overcome shunning, lonliness, and bullies, like Julian, the bully depicted in R.J. Palacio’s New York-Best selling book.
Photo Credit: Dexter Southfield School
Website 

The students were encouraged to ask questions about bullying, staring, and a life that involved a few extra hospital visits than most. Jenna was touched when students asked questions in order to relate to Jenna, and find commonalities between the students and her, and eachother. One wise student asked, “did you ever let the bullies get inside your head?” which is a pretty profound question for anyone to ask, never mind an elementary school student. Not expecting this, Jenna paused and admitted that although it's not necessarily easy, she did allow that to happen, and went on to say that those words from bullies as a youngster, still haunt Jenna today. Jenna explained that by taking the negative and turned it into a positive by using the hurtful words, shunning, and stares, to turn them into confidence and knowledge knowing that their bullying is more about them and less about whoever it is that they choose to bully.


Research Participants Needed For Emory Cleft Project Study


Research Opportunity for Cleft Families

An invitation from Grace Carlock from Emory University


We are reaching out to you because after a successful year of recruitment in 2019 we are ready to start our next round of recruitment for the Emory Cleft Project.

In 2020, we have expanded our online presence to include a website (www.emorycleftproject.org) and are working on our social media presence as well. We are also gearing up to begin another arm of recruitment with healthcare providers and cleft clinics both locally here in Atlanta, as well as, other locations around the country.

More information on the study can be found, here, at our website, including procedures, forms, and more. We are still recruiting for all orofacial cleft types (cleft lip, cleft palate, cleft lip and palate) in the United States and Canada. Also, we are recruiting Van der Woude Syndrome families, nationally and internationally.

We have received back about 55-60% of the sample kits we mailed out. For those that received our kits, but didn't return them... it isn't too late! We would be happy to have people send in their kits. They can contact us via our website for new kits or return labels if needed.

Thank you so much again for all your support, and please let us know if there is any more information that we can provide to you on our ongoing research!

Learn more about our work in the flyer below...



Tuesday, February 11, 2020

Building Resiliency: You Can Change Your Mood, But How?

Photo Credit: Joan Marcus via NPR.org


Scientists say the strongest of the five senses tied to memory is smell. I disagree. Hearing is a far stronger prompt for my memories. Specifically when those memories are tied to music. Often I hear a song and I’m sucked into a time traveling wormhole to the past. In an instant, I’m experiencing the emotion from the place and time I first heard the song. Some may say this is a superpower. I wouldn’t argue with them. Most of the time this is a good thing, while other times it’s not. It’s pure kryptonite. Thus I have to be careful. In order to experience motivation and a positive mental outlook, I must pick a song that will inspire that mood or state of mind. 

Today, I was sad so I decided to listen to “Wait for it” from
the original broadway cast recording of "Hamilton." I recalled where I was when my family got tickets, then I remembered waiting anxiously on the sidewalk in NYC outside the Richard Rodgers theater before the show. Finally I recall watching the play from our back row seats of the dark mezzanine. Then presto-change-o, my mood immediately changed. I was smiling and singing along loudly, proudly in my car. 


What’s your sense super power? How can you turn an anxious mind into peace, or a frown upside down? 

Start with your senses...and you may just learn! 

#mentalhealth #chronicillness 

Friday, February 7, 2020

Building Resiliency: Mindfulness In Every Day Activities


I love my tea! For me it’s more than hot, brown liquid that fuels my day and hydrates my skin. Tea is an experience. the ritual begins with me pouring water into the electric kettle, listening it it boil. Then I delight in selecting a tea from my extensive collection. I love all the bright packaging, or crinkly cellophane. Finally, I drop the bag in one of my many favorite mugs and pour the steamy, hot water into the mug. I love letting the steam waft up on my face and feel the hot cup in my hands. Tea is a meditation that increases our awareness of the present moment through the five senses. 

There are so many ways to be mindful! You can run, sit and breathe, wash the dishes mindfully, and so much more. The idea is that whatever activity you choose you only focus on the activity and its small component parts. For instance, with walking or running, one might focus on how their right foot hits the ground on each step. While washing the dishes, one might inhale the soap's fragrance, feel the hot water on their hands, and the sponge removing a bit of stain from a the dish. 

The idea is to be completely in the moment and one with the activity, not thinking about your homework, or what you need to do next to help your child. If we take things one moment at a time, your anxiety will decrease, and you will feel refreshed! 

Give it a try. See where you can apply this practice in your daily life. What will be your mindfulness practice. 

Learn more about mindfulness here