Children Ponder Good & Evil at Camp Klicek

 

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We are all capable of good and evil.  People do bad things – sometimes they make mistakes that cause harm unwittingly. Sometimes they hurt others purposefully. Sometimes, doing nothing causes more pain for others than we can possibly imagine. At Camp Klicek in Malejovice, Czech Republic, founders Jiri and Marketa Královcovi make room for children to discuss and think about tough issues. They want kids in their care to be more than followers and simplistic thinkers, to see the humanity in everyone and the possibility that although conflict might be inevitable when a large group of people gather, people can make mistakes and still not be bad people.

And so, on one bright summer morning, following a hearty breakfast of porridge, bread, tomatoes, peppers, tea and hot carob with milk, the adults at camp led the children in an activity that reverberated throughout the week. The children gathered in small groups by age bracket. Some sat in the meadow, some under the mess tent, others in the courtyard. With adult guidance, they contemplated these questions:

  • What are bad or evils things?
  • Why do people do them?
  • What can be done about it?

The children took the assignment seriously, taking notes and including the voices of all. I moved amongst the groups, catching a snippet here and there from a kind translator. The children mentioned everything from the past and present atrocities of the world to the more mundane, including genocide, torture, terrorism and bullying on their lists. The youngest camper, when asked why people do bad things, answered, “Because they don’t love each other.”

At the end of the small group conversations, each group reported out to the whole camp, as we sat in the shade of the mess tent and processed together. The discussions were the scaffolding for the real fun. The next step of this activity involved each group choosing one of their examples, writing a play script to demonstrate the concept, and videotaping the enactment. The kids were deeply involved in this process throughout the day, and that night, they set up an outdoor theater in the courtyard, complete with a movie screen, the moon shining down upon us, and homemade apple strudel made from the summer apples, the Klicek version of popcorn. We smacked our lips and licked our fingers as we watched the completed movies, along with some movies created in past years.

My favorite play depicted two different families heading off to summer camp.  One family had no luggage or sleeping bags, just the clothes on their backs. The mother handed her children 10 crowns apiece and kissed them goodbye. The other family stood in front of a Mercedes Benz with their fancy clothes, belongings, cell phones, and the mother dolling out hundreds of crowns to each child. The scenario played out with the rich kids arriving at camp, immediately making fun of the poor kids, an act of kindness when one of them falls down and the other helps them up, and all of the kids ending up playing a game of football (soccer in the US) together.

A simple message, but one not lost on any of us. The campers did indeed come from a variety of backgrounds, and would probably not be interacting at school or in social circles outside of this camp environment. When I think of acts of evil, I think about how we create separation by dehumanizing people who we label as “other.” It is harder to keep these stereotypes and misconceptions in place when we wake, sing, break bread, play, and rest our heads together in the same teepee. I saw many acts of kindness each day between campers, whether it was an older child helping another child navigate steep steps, the hard work of the volunteers in our kitchen, or folks pitching in to help a teen search for her lost eyeglasses.

The thoughtful planning applied to activities that built community astounded me. Along with a mess kit and clothes, the camp packing list asked each child and adult to bring a glass jar with a lid to camp. The campers decorated these jars with their names and artwork, and hung them by ribbons on the branch of a low tree in the meadow behind the house. They left messages of appreciation in each jar, to adults and kids alike throughout the weeks. At the end of camp, they each took their jar with them, with strict instructions to hold off on opening it until they had arrived home. Marketa said that this is a concrete way to further the bonds created at camp. “Some of these children are isolated because of their illnesses. These jars and their notes are a lifeline for them throughout the year.”

My jar sits on my desk at home and reminds me of the generosity of spirit that children share so willingly. I can see why these campers return year after year to the meadow, the tree and the love.

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Wonder

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“Doctors have come from distant cities just to see me. Stand over my bed disbelieving what they’re seeing. They say I must be one of the wonders of God’s own creation. And as far as they see they can offer no explanation… Oh I believe Fate smiled at Destiny. Laughed as she came to my cradle. Know this child will be able. Laughed as my body she lifted. Know this child will be gifted. With love, with patience and with faith she’ll make her way.”

–Natalie Merchant

I am not sure of when it was that I first heard Natalie Merchant’s song “Wonder”, but each time I do hear it, it resonates deeply with me and I feel incredibly witnessed and uplifted.

In the early morning hours of my birth, the doctor gravely informed my parents that he had little hope for my survival. He actually discouraged my mother from naming me, in a misguided effort to help her accept the inevitable. I was born with a rare genetic skin disorder, Congenital Ichthyosiform Erythroderma (CIE). I made my first appearance on earth encased in a collodian membrane  – a tight outer layer resembling plastic wrap, looking as my father loves to say, like a “shiny red sausage”. The doctors didn’t know what to make of me. They had no name for my symptoms, no explanation for my appearance. But their worry about my skin’s ability to provide a sufficiently protective barrier led them to believe that I would not survive.

 

I spent one month alone in the hospital, as doctors searched high and low for a diagnosis. Parental visits were discouraged. They finally suggested that my parents seek an answer at a larger children’s hospital. My parents held me for the very first time in the back seat of the car, as their friends drove them the hour and a half to New York City. Another month passed before I was discharged, still without a diagnosis. The hospital cautioned my parents that the road ahead would be a rough one, and they highly recommended that my family employ a full-time nurse to see to my complicated needs. My mother balked at this. “I’m her mother,” she said. “I am the only nurse she needs.”

 

My diagnosis came soon after, when Dr. Charles Sheard, a dermatologist in Stamford, CT, observed that I appeared to have the same symptoms as one other patient he had read about in some obscure medical journal. Dr. Sheard took me on as a regular patient, seeing me once a week for the first year of my life, then monthly, and as I continued to grow and develop, annually throughout my teen years. He never charged my parents a dime. Although I suffered some complications and hospitalizations during childhood, my health stabilized and I have grown to live a full and rich life with few limitations. When dermatologists examine me, they remark at the seemingly mild case of ichthyosis I have, compared to other patients whose condition hugely impacted their development, mobility, and appearance.

 

I did, however, struggle with post-hospital trauma in the form of sleep disturbances, sensory issues, and severe separation anxiety. Then came the bullying in school. But I had several resilience factors at play in my life. I grew up listening to my parents tell me stories of my early health challenges, referring to me as a survivor and a fighter. My mother too was a fighter and fierce advocate for my medical and emotional needs throughout my growing years.  It should come as no surprise that I became a child life specialist as an adult, advocating for the emotional and developmental needs of children facing illness in hospitals and their communities.  Natalie Merchant’s song “Wonder” reminds me of the miracle of my birth and life, how I surprised the naysayers, and how my mother saw the possibilities and joy in my birth and life more than the dire prognosis.
To learn more about the many forms of icthyosis, check out the Foundation for Icthyosis and Related Skin Types.

Defrosting

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Some wonderful people just visited us over the holidays. They came all the way from Mexico City to spend Christmas in NYC. The added bonus was that although I am close friends with Marifer, I didn’t know the other two very well. But by the time they left, I felt I had two new chosen family members that I will cherish for a lifetime. Marifer’s mother Arin and brother Toño (an amazing photographer and artist) had never visited our beautiful city before, and they arrived months after the untimely and unexpected death of Fer and Toño’s father. Little did they know that they would have a rude welcome in the form of ridiculously cold temperatures. But intrepid is their middle name and we spent 10 days exploring the many beautiful spaces and places in the five boroughs, including grocery shopping in New Jersey. To heck with the cold!

We shared our holiday ritual of attending a Christmas pageant at the Church of the Heavenly Rest on Christmas Eve, followed by a dinner with cousins at a cozy Italian Restaurant. We shopped, cooked, chatted around the kitchen table and shouldered through holiday crowds at Rockefeller Center, Herald Square, and Times Square. We tramped up and down subway steps, dove for coveted seats on the #6 train, waved at the Statue of Liberty from the ferry, ate dumpling noodle soup in Chinatown, warmed our hands and tummies with coffee stops along the way, trekked into museums, the Chrysler Building, Grand Central Station, The public library at 42nd street, the Empire State Building, Bemelman’s Bar, Trinity Church on Wall Street, and B&H Photo midtown. We took a carriage ride through Central Park, viewed the Christmas lights of Dyker Heights, and enjoyed Shake Shack burgers. They topped off the trip on their last day by treating us to scaling the Freedom Tower via the time lapsing elevator ride to the observatory.

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All in all, a pretty incredible week. There was one thing that we had to work around though – our freezer drawer froze shut in a solid block of ice due to a broken water hose connected to the ice maker. It took 12 full days to defrost, and we had to balance our adventures with checking in and emptying pans of runoff water to prevent flooding and mayhem. In what felt like the grip of an ice age, it was almost impossible to imagine that the freezer drawer would ever open again.

And then, before the drawer even opened, they left. They had the nerve to go back to the more moderate climes of Mexico.

A familiar rush of emotion rolled over me – I call it separation anxiety and there is a historical basis for it. I link the surging adrenaline and profound sadness to my early childhood experience of lengthy hospitalizations (2 months at birth and many more throughout my childhood). In those years, doctors did not allow parental presence overnight or for procedures, and my parents unwillingly left me alone for long periods of time. To this day, I weep and feel extraordinarily vunerable whenever I say goodbye to my parents and close friends. The separation anxiety sets in a few days before the parting, rearing its ugly head and tightening my chest against the inevitable pain.

But I have learned a lot over the years.

  • First: The pain always dissipates.  It feels crushing and paralyzing at  first. In those initial moments, it seems that it will never be okay again, that the emotions are permanently etched into every waking moment of my life. But this is not the truth, and the pain gets a bit less with each passing day, and in particularly good times with each passing hour.
  • Second: Even though I have a unique personal history, many other people suffer from this kind of agony. Talking to someone who really gets it normalizes the feeling, helps ameliorate the intensity, and lessens the shame and self flagellation that can accompany it.
  • Third: Your average person can feel down around any holiday, especially if they have suffered a loss.  Depression and/or anxiety can naturally follow even pleasant holiday experiences.
  • Fourth: Despite the intensity of my suffering, I would never choose to avoid it by giving up friendship, intimacy, and community. The gain is always worth what follows, and the sun always rises after. Like Florence and the Machine sing, “It’s always darkest before the dawn!
  • Fifth: For any clinician working with families, or anyone who knows someone suffering a horrible loss, we can reflect hope and faith in the return of joy even in the midst of pain. We can give permission for all emotions and refrain from enforcing an arbitary expiration date on the grieving process.

So, hail to all you hardy souls out there, who love in the face of loss and suffering, who choose to walk through life with an open heart. And for anyone who hesitates, but considers it, try taking a leap of faith in the ultimate defrosting process. The light and warmth will return, and the seasons of life will always sprinkle some joy amidst the sorrows.

 

 

Child Life in Private Practice: Supporting Parents and Children through Medical Encounters

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Studies show that children who are prepared for medical procedures recover faster with less emotional stress. Even routine procedures such as vaccinations can cause children undue stress and lead to treatment noncompliance and avoidance of medical care. Children require developmentally appropriate information about what they will see, feel, hear, taste and smell that will prepare them without overwhelming them. Through hands on demonstration and guided play, I can prepare you and your child for medical encounters, and coach you both in coping strategies. Calm, informed parents are the best support for their children when facing routine and unexpected medical visits and hospitalizations.

I am pleased to announce the expansion of my private practice as a Child Life Coach on the upper east side in Manhattan. Child life specialists are trained in child development, education, anatomy, health care systems, family systems, ethnocultural issues, advocacy, and bereavement. In and out of hospitals, we help children and families prepare for and adjust to medical encounters by providing education, medical play, support,  coaching and advocacy.

Here are several of the services I offer to parents & schools:

  • Coaching and Support for Parents in::
    • how to prepare their cildren for medical events, from routine wellness appointments to surgery or long term treatment.

    • how to support siblings when a child is ill

    • how to support children through a parent’s serious illness.

    • Child centered play skills to caregivers who wish to connect more with children in this digital age.

    • In home preparation for elective medical, diagnostic, and surgical procedures.

    • Workshops: Please see my listing on Cottage Class Parents As Heroes: Supporting Children Through Medical Encounters
  • Professional Development: Training and Support for Teachers
    • How to support your class (school) when a student faces illness and loss

    • Child-centered play techniques

    • Emotionally responsive teaching

    • State mandated child abuse detection and reporting

  • Video Conference Consultation and Support
    • If traveling is an issue, I am available through video chat to support parents at a distance

More information about my practice can be found on my website at  debvilas.com, and please take the time to like my FaceBook page at Pediaplay

I greatly appreciate any referrals to parents and caregivers who need this kind of support. I can be reached at debvilasconsult@gmail.com

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All the best,

Deb

Deborah Vilas, MS, CCLS, LMSW

Follow me on Twitter:  @DeborahVilas at Twitter

CLC Video with Deb Vilas Appearance: That’s Child Life!

Driving the Camel: Installment #4

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Chapter 3: Secret Weapons

Not only did I have a year to focus on my treatment and recovery. I also had a secret weapon: Child Life. I learned from the chemo snafu never to go to a doctor’s appointment alone. When Mark or a close friend or family member couldn’t go with me, child life colleagues and past students took turns accompanying me to appointments and treatments, making a mini party out of each and every chemo session. They brought treats, read aloud to me from trashy magazines and made me laugh so loud once that the nurse came to close our door so we wouldn’t disturb the other patients. And that was just the beginning of a landslide of help and cheer.

Each person performed a simple task or favor that woven together, formed an army of support. From walking to my dog, to teaching my course, offering to design a tattoo to beautify my scars and performing Reiki on me, their generosity knew no bounds. The regional group of child life directors organized the drop off of a slew of coping and comfort items, queasy pops, distraction toys to use during IV’s and blood draws, journals, chocolate, gag gifts, warm socks, and cute hats.  

One friend’s actions were perhaps the most far reaching of all.  Sydney, with her non-stop energy and raucous laugh.  She blew me away when she organized Team Deb to walk in the American Cancer Society’s Breast Cancer Awareness walk, raising over $4,000 in my name. She sent every supporter a t-shirt that read “Team Deb”. Along with the shirt, everyone received a ridiculous Deb head on a tongue depressor, a disembodied photo of my smiling face. Those who couldn’t make the walk posted photos of themselves on Facebook wearing the shirt and holding the Deb head. Sydney showed up on the day of the walk with her whole family in tow. She jumped atop a park bench waving Deb head’s to help gather Team Deb amidst the throng of thousands. That sight is one I will cherish for years to come.

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I wasn’t the only one in my circle to face the cancer battle. My colleague, Annie, experienced a double whammy. Two weeks after I shared my bad news, her sister was diagnosed with stage III breast cancer and had to endure a double mastectomy and heavy-duty chemo. Annie brought us together and we became chemo buddies, cheering one another on throughout the process. When Annie showed her sisterly support by shaving her head, they invited me to the shaving ceremony via video chat. I was moved to tears watching their husbands reverently shaving the heads of their wives. I had to turn away from my computer camera for a moment so they wouldn’t see me cry.

On my first day of chemo, I received a package in the mail: a life-sized cardboard replica of my favorite actor from Lori, a child life specialist and young mother in Colorado.  I piggybacked on that idea and sent Annie’s sister a life-sized replica of  Dwayne Johnson, or “The Rock”, his ring name as a professional wrestler and her favorite actor of all time. 

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Continue reading

Retraining my Brain

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I had surgery last week to repair a tendon in my right wrist, which happens to be my dominant hand. With my hand wrapped up like a giant cocoon, I am learning a few lessons quickly.

  1. There are many daily tasks that we perform without much attention or awareness.
  2. My non-dominant left hand is slow and clumsy.
  3. I cannot multitask as I did before.
  4. I am slowing down to a methodical plod with each task.
  5. I am compensating by using my left hand a lot.
  6. This may not be such a bad thing.

“The non-dominant hand is actually linked to the non-dominant hemisphere in your brain – the one that isn’t exercised as often. There are studies that show that when you use your dominant hand, one hemisphere of the brain is active. When you use the non-dominant hand, both hemispheres are activated, which may result in thinking differently and becoming more creative.”http://www.goodfinancialcents.com/benefits-of-using-your-opposite-hand-grow-brain-cells-while-brushing-your-teeth/

Continue reading

Reach for It!

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A community of street vendors lines the sidewalk around the corner from where I live. As I run the gauntlet of tourists and fellow New Yorkers, my yellow lab-pit mix lunges at an unsuspecting flock of pigeons. They burst into the air, settling a moment later. Gracie gives it another go, all but yelling “Hiyah!” as the birds flap around us.

One of the vendors calls out, “You just keep on going!”

I turn to him and smile. “Yeah, can you believe she’s 11 years old?”

“No, you,” he grins. “You’re like the energizer bunny, going and going.”

As Gracie pulls me on, I wonder. Why did he say that? I don’t know his name, but he knows something about me. At the end of my 1.6 mile walk around the reservoir, I return to his food cart.

“Hey, excuse me,“ I say. “Can I ask you a question?”

He turns from what he’s doing and steps closer to his cart window, looking down at me.

“Did you know that I’d been sick?” I ask him. “Is that why you said that before?”

He smiles kindly. “Yeah, I talked to the guy who walks your dog. I asked him about you.”

I let that sink in for a moment. I take another risk.

“You were sick a while back too, right? I noticed you’d lost weight, and then you weren’t around for a while.”

“I lost a kidney,” he replies. “But now I’m 100%.” He says this with a big smile, spreading his hands expansively to measure his improvement. “ What were you sick with?”

“Breast cancer,” I say, without hesitation. “Surgery, chemo, radiation, the whole shebang. Now I’m 100% too.”

I reach my hand into his cart. “I’m Debbie. Nice to meet you, neighbor.”

“Jimmy”, he says, shaking my hand.

I see this encounter as a reminder. I survived some pretty daunting medical treatment in 2013. But I had incredible support from some unexpected places. In addition to a community of colleagues and Bank Street College alumni who did everything from walking my dog to accompanying me to chemo appointments, I had my own secret weapon. I reached into my Child Life bag of tricks for coping mechanisms to help me through. I used play, humor, writing and videography to scaffold my journey.

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This week I face a much less frightening surgery, an outpatient procedure to mend a torn tendon in my right wrist. Until this morning, though, I have to admit I was feeling a bit sorry for myself and pretty anxious about being stuck left handed for the duration of my recovery.

But Jimmy’s witnessing was a reminder. It jumpstarted my awareness of the lessons learned during cancer treatment. I have all that I need. It’s all here. I can handle this. All I have to do is reach for it.

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Traveler’s Prayer

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I don’t believe in coincidence. I do believe in synchronicity. Less than 24 hours before I leave for a teaching trip to three cities in Japan, I open my book of daily inspirational reading Julia Cameron’s Transitions: Prayers and Declarations for a Changing Life to this passage:

“My Lifetime listens to yours”   Muriel Rukeyser

“The world is peopled by travelers each with a journey. As we make our way through our own obstacles, we are often oblivious to those who travel by our side. And yet when we open our hearts to the adventures and adversities of others, our own journey is illuminated. Those who travel beside me are my teachers and those I teach in turn.

Today, I turn my attention to the lives of others. I open to the interactive dance of our intersecting lives. Alert and attentive, I learn from those around me. Empathetic and involved, I teach what I have learned. Ours is a journey of shared hearts. I lift the lantern of camaraderie.”

And thank you Betsy for reminding me of the analogy of Johnny Appleseed. I look forward to seeing what wisdom I can gather as well as scatter.

Getting Older

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Me and my godson, Joaquin July 2015

Tomorrow at 12:50 AM, I turn 54 years old. Many women do not want anyone to know their age. I remember turning forty and all the angst that led up to that day -such a waste of energy now looking back.  By fifty, I had wised up a bit and  celebrated my birthday by going skinny dipping  with friends. But now things are even more clear. When you have survived cancer, there is a crack in the door of egocentrism that can squeak open to reveal a great deal of light — if you allow it in. I now celebrate my aging with gusto, even if that means a slowing metabolism, greying hair, hot flashes, and an ache here and there (and here and there and here and there!!!).

I am so profoundly thankful for every day of health, for the joy of spending time in the company of really good people, and for my adventures, of which there are many. I am glad that I am here on earth enjoying these things, even when I get tripped up by a modicum of anxiety and fear, probably on a daily basis.

A writing coach is assisting me with the immense task of authoring a book. As I stumble about trying to figure out what the focus should be, what to leave in and what to take out, she says, “Your account of your cancer treatment is too cheerful. I want to hear more about your pain, what you endured.” Continue reading

I am Not a Mother – Or am I?

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I am not a mother — or at least I am not in any literal sense of the word. At the age of 53, I have never had children. Nor have I adopted any. And no matter how much I joke about my dog being my “child with fur”, I know that she really doesn’t count.

And yet, I have spent much of my adult life caring for children and young people in one way or another, as a child life specialist, a teacher, an honorary aunt and fairy godmother. I have also devoted the past 14 years of my career to teaching and advising others about how to best meet the needs of developing children. Sometimes I even feel a sense of deep maternal care and investment in my adult students, many of whom are millennials young enough to be my children.

But I am not a mother.  So what does this mean when Mother’s Day rolls around? Continue reading