Self-Care as an Antidote to Coronavirus Anxiety

~ Deb Vilas ~ 3 Comments

When The Caregiver Needs Help


We are all facing personal and professional fears regarding the coronavirus. Everywhere we turn, we are saturated by information, much of it needed, some unnecessary, some sought, some dropped in our laps without our consent. As a dear friend said to me today, there is a lot of noise but not a lot of guidance. We are doing our best to stay calm so that we can care for the children and families in our midst, as well as for our own families. 


The question is, what do we do to calm our own nerves, so that we don’t unwittingly increase anxiety around us? How do we keep from contributing to the growing hysteria, while still remaining prepared and logical? A piece of the answer lies in self-care.

Self-care is certainly something that child life specialists know a lot about. But sometimes we need to remind ourselves to reach for it, especially in times of challenge.  I want to share with you all what I am doing for myself, and then list some added suggestions that might be helpful to you. 

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Home Away from Home

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How often is it in life that we truly feel at home in a place other than our own home? What are the ingredients that allow us to feel comfortable in our own skin, undefended, and at ease?

I seem to have stumbled upon many of these intangibles as I return for the seventh time in five years to the Czech Republic. Ostensibly I come here for work – collaborating with the Klicek Foundation to grow hospital play work in their country. We travel to various cities and venues, giving lectures to students and professionals of medicine, nursing, social work, psychology, and play work about the philosophy and logistics of providing humane, family-centered care to children and families facing medical treatment. I join them in the summertime to volunteer in their hospice summer camp.  But what happens here is so much more than work.

With each visit comes an immersion in the Czech culture, and more specifically, the culture of the family who sponsor my visits. In between travel and lectures, we gather at their hospice and home in the tiny village of Malejovice, about 40 kilometers southeast of Prague in the Bohemian countryside. Here in a century old schoolhouse on a small farm (replete with donkey, sheep, chickens, many cats and a dog), the Kralovitzes welcome children and families who seek respite and comfort from lives affected by illness, disability, and loss. It is not a hospice in the way most of us would imagine. It is neither a medical facility nor a place where children go to die. Rather, it is a retreat where individual children or the whole family can relax in a natural environment, receiving nurturing in the form of companionship, a warm and caring listening ear, opportunities for play and exploration of the surrounding fields, forrests, orchards and gardens, and astoundingly good and healthy food. One falls asleep to the quiet darkness of the countryside and awakens to the bray of the donkey. It is, quite simply, magic.

Daily outings to local farmers and vendors, for cabbage, potatoes, apples, bread, butter and other essentials are interspersed with visits to hospitalized children and home visits to grieving families in neighboring towns and cities. No trip seems too far if someone can be served. This past weekend, my hosts drove a six hour round trip journey so that a teen could enjoy a visit to the hospice following a hospital discharge post heart- transplant.

Over the past five years, I have joined the family in celebration of the anniversary of the Velvet Revolution, decorated Christmas gingerbread cookies, accompanied them to church, fetched water with them from a natural spring, traveled with a theater troop visiting holy places throughout the country, played with Roma children in their neighborhood, and viewed many monuments such as the sculpture memorializing  the children of Lidice, murdered during World War II,  and the sculpture honoring Jan Palach, the young man who set himself on fire in martyrdom in Wenceslas Square during the Velvet Revolution. We have traveled to the far corners of the Republic, and visited neighboring Poland and Austria. With each visit, Marketa draws up a map and schedule to help orient me. 

We have explored curriculum, translated documents, done voiceovers for video, co-presented at global conferences, met with political leaders, and have appeared on local Czech TV.  We have driven countless hours in cars, vans and their iconic 1950’s bus, stopping for never-ending errands and house calls.  We have shared life stories, played music, laughed and cried (Well — I’VE cried!) and sat talking by the fireplace late into the night. 

And so perhaps this is the secret ingredient, the simple yet rare experience of being included in everyday family life while pursuing a shared vision, that ill children and families everywhere might feel witnessed and safe. What we wish for them is what I end up experiencing in a profound way.

What Am I Good At? Building Self Esteem through Play at Camp Klicek in the Czech Republic

~ Deb Vilas ~ 2 Comments

Time to Explore:

The long days of summer, with the sun rising at 6:30 AM and setting close to 10:00 PM, lend themselves to unhurried, lengthy swatches of time. These hours can hold many opportunities for children and adults to engage in unfamiliar activities and discover new skills. Time for free play and exploration is a commodity during our workaday, technology-filled lives, but Camp Klicek in Malejovice, Czech Republic provides exactly this to children and families affected by illness and loss.

In the photo above, two seven-year-old boys get their hands on a saw, as they break down a tree branch in preparation for the campfire that all the campers will enjoy. Besides being fun, the boys are building their muscles and coordination, getting some great proprioceptive feedback, practicing cooperation and self regulation, not to mention problem solving. Their self esteem gets a healthy boost as they accomplish something new and contribute the the camp community. These are some of the attributes of spontaneous play that adults should take note of as we consider the developmental, social and emotional needs of all children

Structured Games

Sometimes structured games can lend themselves to learning through play that is so much fun that kids forget that they are learning. On this day, the campers were divided into three teams, and each team had four tasks to compete. They had to find a way to measure a liter of liquid, a kilo of sand, the length of a meter, and the span of a minute, all without the use of measuring devices. The camp was alive with children gathering sticks, pouring water, scooping sand into sacks and counting out loud and in their heads, as the teams competed to see who could get the closest to the actual measurement.

Group Play

On another day, volunteers from the Accace Corporation brought a day of activities to the campers. In the morning, they set up tables in the summer garden and mess tent, including paper arts and crafts, flower pot decorating, a drink mixing table with great recipes for virgin mojitos, margaritas and pina coladas, and a beauty salon station with face, body, and nail painting. Kids explored their artistic sides and wore their art with pride.

In the afternoon, the company volunteers set up an activity course in the forest, replicating what is entailed in working for a big company. My favorite station was the accounting department, where the employee had to take a fist-full of invoices and chase after the client to whack them with the papers to make them pay their bills!

And the other one I loved was a station where kids were taught the art of communication. They were told that communication is the lynchpin of success, and in order to practice communication skills, they had to stand on one side of an easel and describe a picture to their coworker on the other side, who had to paint of draw what that person was describing. It was a tough but very fun challenge for the kids.

In yet another station, the children ran through the forrest balancing cups of coffee they had made for their boss, trying to get to their boss’s office to sign power of attorney documents without spilling a drop.

Sharing Skills With Others

Many of the campers had their own skills to share and teach. Here are several of them, starting with an 18-year-old who made up a rap song on the spot.

One 14-year-old camper had a lot of skills, including bugle playing, fire breathing (So sad I didn’t get that on film!!), and archery. Here he is teaching another teen how to shoot a bow and arrow.

This young magician taught us all how to get a 100 Crown bill out from under a beer bottle without touching the money or the beer.

This artist created a virtual masterpiece depicting several scenes on one ceramic pot.

And even the youngest of the campers showed their talents. Whether it was my lunch-mate practicing his English, or a shy kid joining in on a new ly introduced American game of “Happy Salmon”, the kids never ceased to amaze me with their willingness to take risks, learn and share. I watched with admiration as this 6-year-old moved with the utmost patience and precision in a game of pick up sticks.

Nothing raises kids up to their potential the way play does. You can see the pride glowing as their self esteem grows by the second. And I feel so blessed to witness and participate in this play at Camp Klicek! Happy Summer!

Klicek Hospice Summer Camp: Kinderspiel Czech Style

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drawing by Markéta Královcová

A Diverse Community

My second stint as a volunteer at Camp Klicek in Malejovice, Czech Republic was as joyful and soul-filling as my time there last year.  The camp is special in many ways, but there are several unique facets that really stand out in my mind.  First, campers are encouraged to invite family and friends, and most campers have at least one sibling, parent, cousin or grandparent accompanying them. Most participants have been affected by an illness, developmental delay, death of a family member, poverty, racism, or incarceration. The campers range in age from one year to twenty-one (higher if you count the adults!) and come from such diverse backgrounds and situations that they form a very unlikely community of intersectionality.  This two-week summer camp brings together these widely varied individuals to partake in an environment steeped in nature, nutrition, community, and simplicity.

The Context of Nature

Children sleep in towering teepees and smaller tents constructed in a field behind the main house, a 100-year-old converted schoolhouse equipped with wheelchair access, hospital beds, and three working kitchens. The field harbors an orchard and several gardens that produce fruit and vegetables for meals and flowers that adorn each table in the mess tent. At breakfast, preserves made from this year’s crop of strawberries smother daily fresh bread from the bakery, accompanying homemade porridge with gingerbread crumble. Every meal is taken outside, and all campers gather several times a day for large group activities.

Real Play

The lengthy summer days, temperate climate, and loose structure of the day leave ample opportunity for the simple kinds of play that seem to be disappearing in today’s wave of technology. Campers are asked to turn in their cellphones each day, and are encouraged to find what they enjoy and make the most of each day. Whenever I offered to help out in the kitchen, I was instead encouraged to “Go play with the children. That is a better use of your time.” And so I too was free to enjoy the spontaneous kind of play that forms the building blocks of childhood.

Here are some examples:

Hand Games

I taught the kids how to play “Butcher Make the Meat Red”, a hand game where one player attempts to slap his opponent’s hands while the other player evades pain. They taught me how to play a finger counting game. Thumb wrestling and criss cross (patty cake) needed no translation.

Rough & Tumble Play

Kids don’t always get a chance to engage in gross motor rough housing play. Here they had plenty of opportunities for this without adult interference.

Feats of endurance:

Kids spontaneously tested their own strength and cheered one another on. Football (Soccer in America) and a Camp Klicek version of baseball (involving knocking over cans and running bases) are also popular.

Loose Parts Play

The children chose names for their teams (there were three teams for chores and competitions), and then found loose parts in nature to depict their team name. The foundation has an ocean theme running through it, which is hard to explain for a land-locked country. But the teams were encouraged to include this theme of being at sea in their chosen names. Here are the results.

“Rats from Below the Deck”

“Mussel and Green Psychodogs“

“Nails on the Sea”

Forrests and Fields

There were many opportunities to walk and play in the neighboring forrest and fields, gathering campfire wood, building fairy houses, and searching for buried treasure.

Imaginative Play

Last but not least, the younger children explored toys, dressed up in princess garb, and played with music.

This smörgåsbord of play is a perfect real world representation of the lovely parting gift I received from Jiri and Marketa Kralovec upon my last day at camp: a print of Pieter Bruegel’s 16th century painting of Kinderspiele.

I came home filled to the brim with fresh air, incredible food, and most of all, play and excellent company. Thank you Camp Klicek!

Stay tuned for my next blog, where I continue to share camp photos and stories.

The Knot in Your Throat: Love, Death & Resurrection

~ Deb Vilas ~ 6 Comments

Thalia self portrait

Some of us are blessed with angel guides here on earth. I met mine, Thalia Georgiou, 22 years ago. At the tender and ancient age of 15, Thalia peered over a precipice and saw her possible demise.  A tumor snaked around Thalia’s carotid artery, threatening to cut off the blood supply to her brain or empty her life’s blood should a surgeon’s hand err.  After receiving a death sentence in her home country of Greece, she arrived in New York City to prove her doctors wrong. She came for chemo to shrink the tumor, surgery to remove it, and radiation to prevent its return. She came to survive the odds.

Flashback — 1998 —

I get to know Thalia’s mother before I make inroads with the teen. Her mother attends a parent respite group that I co-lead with a social worker. Thalia prefers the jewelry making classes in the adult recreation program to the children’s recreation area where I work. But one day, she rolls her IV pole into the sun-drenched playroom and asks me for some time — in private.

As I close the door to my tiny office, Thalia reaches into her knapsack and hands me a clear, plastic bag.  “Open it,” she encourages me. I obey her and find a long braid of hair encased within. “Touch it. Smell it. Feel it,” she says.  “Look at how it’s red on the top and brown underneath. I dyed it once. See all the beautiful split ends. When I had hair, I hated split ends. But they are so beautiful now. Sometimes I tell my mom, ‘Get my hair. I want to sleep with it.’ And I curl up with my hair on my pillow.” As I follow her instructions and bring the braid to my cheek, she watches me expectantly, a faux panther tattoo adorning one side of her naked scalp.

Thalia puts the hair carefully away. In its place, she brings out several photo album pages. Holding them on her lap, she slides her chair close to me and points. “This is my neighborhood taken from my best friend’s house. You can see my house from here. This is the roof. See the little park at the end of the street, and the trees? It’s such a pretty street.” She shows me photos of boys, describing them as both friends and boyfriends. Thalia confides in me that one of them looks like a boy here at the hospital. “You know I was thinking. I’m away from home and very sick. He’s here, very sick. Why not?”

There are pictures of her best friend, a lovely girl who “took some of my boyfriends, but that’s okay.” In one shot, she and Thalia are at the airport on the day that she left for New York City.  The friend is clearly distraught and tearful. I say, “I can almost imagine what it must be like seeing you off, not knowing if and when she’ll ever see you agin., feeling helpless to do anything for you.”

“Yeah, and how do you think I feel?!” she retorts. “A million miles away from home, alone, facing death.”

A small gash appears in my heart.  “Are you facing death?” I ask.

“Well, when I came here they said that without treatment, I’d be dead in four months. Then they said that with treatment … well, they said that even if my tumor responds to treatment that I only have 30% chance anyway.”

“Do your friends know this?”  I am wondering how she is coping, who she is leaning on.

“Well, I told them all that I was dying right away.” Thalia smiles gleefully. “And you should have seen all the attention I got!”

I note that amongst all of the pictures, I see none of her father. She explains that she has drawings of him. She hands me a sketch pad. “I’ll show you my dirty picture first.” She turns the pages to a pastel drawing of a graceful, naked woman. A pencil drawing of a woman in lingerie, a handcuff dangling from her finger. And two drawings of her father,  profiles of him relaxing with music, with one shoe off,  and another at the beach. sporting long, curly hair and a hairy pot-belly.

 

There is a self-portrait entitled Mirror Image, August 1997. A slightly wary version of Thalia in pencil, braid intact, tilts her head to the left,  her eyes trained to the right at her own image in the mirror. I don’t notice any trace of the long scar from her initial surgery that presently runs along the left side of her neck, and so I ask, “Were you ill yet when you drew this?”

It’s as if she knows what I am asking. “My head was turned — see — no scar.”

We pour over many more drawings, each with a story to tell. The museum walk continues when Thalia holds out a large, heavy ring. It is silver with a jade stone. “This was given to me by a friend of my mother’s a long time ago. When I think of this ring, I think about my whole life, the mistakes I’ve made, the things I’ve learned from them. You know, when I came to the hospital, I really changed. I am not the same person I was before. And three days after I got here, the ring broke. It was so strong that a train could run over it. But look, I can’t wear it anymore.”

The last thing she digs out of her bag is a handful of three Greek audio cassettes. I ask her if she wants me to borrow them and listen to them at home. “Not exactly,” she answers and pulls a cassette player out with a flourish. She cues up a song for me and plugs me in. She translates for me as the music sears my eardrums.

“It’s like this. When there is a knot in your throat, and the ceiling is spinning, you feel your tummy is going to be ripped open. This is love, and it is death and resurrection combined, and it goes on and on and on.”

That hour spent with Thalia so many years ago serves as a permanent beacon in my work and life. Her humor, honesty, wisdom, and bravery continue to inspire me. She reached out to me on FaceBook when she turned thirty, and we remembered and laughed together, musing about the horror of that year, and the hope.  She returned to Greece after treatment and now makes a living designing and creating jewelry, clothes and wedding dresses.  She developed the building blocks of these skills while in the hospital. She was the kid who used her radiation face mask as a display model for homemade earrings and necklaces. She could turn torture into beauty – and she still does.

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Thalia was married this past week to her soulmate at a castle in Italy. Here she is in the wedding dress that she created, in the life that she resurrected.

 

 

 

 

 

You can visit her Etsy shop and purchase her amazingly original designs at https://www.etsy.com/shop/THAGartDESIGN/items and follow her on FaceBook at https://m.facebook.com/ThagArtDesign/ and https://m.facebook.com/bloomingmusejewellery and her Instagram accounts are Thag.Art.Design and blooming_muse_jewellery. She models all of her works of art. Note the ring in the lower right-hand photo………

 

 

 

 

 

 

 

 

Undo Racism Every Day: Exclusive Interview with Children’s Author Anastasia Higginbotham

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ANASTASIA HIGGINBOTHAM has written a courageous children’s book that seeks to dismantle institutionalized racism and white supremacy, one conversation and action at a time. Not My Idea: A Book About Whiteness  challenges adults to face their own discomfort and biases in order to validate the truths that children intuit. In this exclusive interview, Anastasia discusses her process of expanding her world view and becoming a disruptor of the very best kind.

Deb: “What prompted you to write this important book?”

My answer is a who and a what. Who inspired me were Black women: Noleca Anderson Radway, Brooklyn Free School Executive Director; Reverend angel Kyodo williams, Zen priest and co-author of Radical Dharma: Talking Race, Love, and Liberation; and Anyanwu Uwa, The Human Root Co-Founder and Executive Director. Noleca made me see white power in action and in myself; Rev. Angel dared me to connect with my deepest conditioning into whiteness and grow from a place of heartbreak; Anyanwu insisted I view myself as worthy. What inspired me is everything that the Black Lives Matter movement shows us about state-sanctioned murders of Black women, men, trans people and kids by police, plus no accountability for those crimes and new ones committed against the BLM activists themselves. Continue reading →

Kenya Child Life Program Spotlight Continues: Liz Kabuthi

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Liz Kabuthi prepares children for surgery using a book of photos

Last week, I spotlighted the work of Child Life Specialist Jayne Kamau at the Sallie Test Pediatric Centre at Moi Teaching and Referral Hospital in Kenya. This sustainable Child Life program is one of a kind in East Africa. The Child Life staff and founder Morgan Livingstone are especially proud  this year to be working with Courtney Moreland of  Child Life United to offer child life practicums in Kenya.

This week, we hear from Liz Kabuthi, who I had the pleasure of meeting when she represented her country as a delegate at the Child Life Council International Summit on Pediatric Psychosocial Care in 2014. Her reflections on her child life journey and work are deeply moving, and give us a glimpse at how this profession influences and betters our lives even outside of the actual hospital work. Continue reading →

Sustainable Child Life Services in Kenya

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The Sally Test Pediatric Centre in Kenya is proud to have the first sustainable child life program in East Africa. By sustainable, I mean that rather than mission-based services that come and go, it is staffed by citizens of Kenya who have obtained child life certification through the Association of Child Life Professionals (ACLP). Morgan Livingstone of Toronto, Canada, saw the need of such services and has worked tirelessly over the years to train and support the staff at Sally Test.

Over the next several blogs I am spotlighting the work of the child life specialists in Kenya. The team has faced many challenges in becoming child life specialists, and they are doing extraordinary work to humanize medical treatment for children and families in their care. A special thank you to Morgan Livingstone and the Sally Test Child Life team for taking the time to answer my interview questions and send along great photos.

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Jayne Kamau

 WHAT INSPIRED YOU TO BE A CHILD LIFE SPECIALIST?

I had worked in pediatrics unit as a social worker and was so comfortable and passionate with the children and their families. I had not heard about the Child Life profession until when Morgan Livingstone (CCLS Canada) came to Kenya for a one day workshop and introduced the concept of Child Life. An interest was triggered there and then and my mind and heart were in agreement that this profession though new to me was what I wanted to do. I started doing my own research about the profession and what qualification was needed to become a certified child life specialist.  So when the program was set up in our hospital and people were called for interview, I was among the very first to apply and now here I am. Continue reading →

Cooperative Play in Nature at Camp Klicek, Czech Republic

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the volunteers!

Photo credit: Jiří Královec

(Thanks to Jiří Královec for many of the photos! The best ones are his and noted beneath each photo. The rest are my amateur work.)

At Camp Klicek in the Czech Republic, a place where children and adults affected by illness and loss gather, activities run the gamut from a tiddlywinks tournament to bussing campers to a Shakespearean play.  The Accace Corporation provides tax advice to the foundation during the year, but they look forward to visiting the camp in person to have fun with the children and families each summer. This July, a fabulous group of volunteers  arrived with a day full of activities to engage us all. Their choices promoted creativity and cooperation amongst the campers, and nature threaded its way through the day’s activities. The volunteers brought their A game to the endeavor – with wonderful materials and activities – but more than anything, they brought their hearts. Continue reading →

Making Hospitals More Hospitable with The Tongue Depressor Challenge

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My colleague, child life specialist Jon Luongo, is one of the most playful professionals that I have the pleasure of knowing. He taught me all about the “tongue depressor challenge”, which is described in detail in our co-authored chapter in the Handbook of Medical Play Therapy and Child Life.  Below is a brief introduction to the activity by Jon:

I encourage the doctors to tap into their imaginative playfulness to complete what I call the ‘tongue depressor challenge.’ The task is to co-construct a teaching tool alongside a patient to explain a part of the body, a particular medical condition, or piece of medical hardware. The challenge for doctor and patient is to use at least one tongue depressor in their design; like a single LEGO brick in a set of construction toys, the tongue depressor represents a humble piece of medical paraphernalia with limitless creative building potential.

 

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As with many great ideas, I borrowed Jon’s and tweaked it a bit. This past July, I brought the activity with me to the Klicek Foundation Summer Camp in Malejovice, Czech Republic. Camp directors Jiri and Marketa Královcovi graciously allowed me to lead the campers in a slight variation on Jon’s theme. Continue reading →