Stories about Kids who Taught me Stuff

Klicek Hospice Summer Camp: Kinderspiel Czech Style

~ Deb Vilas ~ Leave a comment
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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.

Making Hospitals More Hospitable with The Tongue Depressor Challenge

~ debvilasconsult ~ 2 Comments

 

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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 →

Children Ponder Good & Evil at Camp Klicek

~ debvilasconsult ~ Leave a comment

 

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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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Child Life Cooperative: Learning One Child At a Time

~ debvilasconsult ~ 2 Comments

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This week we welcome Allie Jones, the founder of the Child Life Cooperative- a website and podcast with the mission to advance the child life profession by learning through reflection, uniting for support and equipping students. Follow on Instagram or email at allie@childlifecooperative.com. I invited her to share a story about her work with you all.  Take it away, Allie

 

Deb may not remember this, but when I began my very first child life job I desperately reached out to her for help. The job I had been dreaming about turned out to be a job that I dreaded going to each day. I am pretty convinced that I developed a reputation on the commuter train as being “the girl that was always crying” before and after work in the city. 

Within a short week of starting a one-person child life program, I quickly got the sense that child life was an unwanted and misunderstood service. The rehabilitation hospital wanted a person who would organize fun activities for the therapists to do with the patients during therapy. Staffs’ expectation was that this person would then stand off to the side—no talking, no co-treating. In their minds, child life was a party planner and recreational therapist. And if I tried to advocate and educate staff of more appropriate ways to utilize child life, then I would be at risk of being fired. On my first day as I shared ideas of how to develop the child life program, a behavioral therapist looked at me square in the eyes and said, “just do what they tell you to do. Tread lightly, Allie, or else…”

I felt intimidated. I felt overwhelmed. I felt defeated. And, I felt utterly alone.

I decided to email Deb Vilas, someone who I had never met, but whose name continued to pop up in child life forums and articles. I wanted to see if she had any advice on how to proceed in such a discouraging job.

Deb encouraged me, providing alternative approaches I could try. She reminded me to gently educate and model for staff what child life truly was. She pointed me towards focusing on connecting with the patients personally and spurred me towards pressing onward with confidence and conviction.

Which I did. And to be honest, every day was a battle.

Not only were the expectations of party planning incredibly taxing and difficult to carry out as a one-person program, my patient population also proved to be a challenge. Many of my patients were from the inner city and had come to the rehabilitation hospital due to injuries related to gang violence.

One patient, we will call him “Devon”, is a young man I will never forget.

I met Devon one afternoon during rounds. He had just been admitted and I could hear him shouting and swearing down the hall.

I heard staff whisper, “he is 16 and was shot 6 times trying to steal a car. This will be fun, won’t it?”

I knocked. “Devon? I am Allie, my job is to—“

“Hey, you know what? I don’t care. Go f*** yourself.”

“Alrighty, then. Good talk. Until tomorrow, Devon.”

I didn’t feel it was the time to keep pressing at that moment with Devon. Instead, I tried to break down his walls by showing up at his room every. single. day. The kid was going to be here until further notice, so I figured I had some time to connect with him.

And so. Every. Single. Day. I kept at it.

Day 2.

“Hey, Devon. Allie, here.”

“Get out. Go f*** yourself.”

Day 3.

“Devon, I just got this new video game and—“

“Would you shut up? Leave!”

Fast forward to approximately 15 days later.

“Hey, Devon.”

“Allie, right? Word is you have some McDonald’s gift cards you give out to kids and can take them across the street after therapy is over.”

That was true. I actually received training in order to be able to take kids on outings.

Yet, hearing him actually initiate made me speechless at first.

“I like hot fudge sundaes,” Devon continued.

Finally, I responded, “I do, too. Let’s go get you one.”

From that day forward I sat in disbelief as I saw D’s walls slowly start to come down.We began a weekly ritual of going across the street to McDonald’s. And boy, it must have been a sight to watch us even try to get there! Devon was paralyzed from the neck down and was cruising in an extremely heavy and finicky power wheelchair. I was the lanky young-looking girl who would try to push said power wheelchair when it would malfunction!

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But we would make it. And we would sit and actually talk. Devon began to open up to me about the life he lived from foster home to foster home. He shared with me the loneliness and abandonment he faced that pushed him to join a gang, his only sense of “family” and “belonging”.

Devon came to our hospital as a raging, angry, bitter and violent teenager. Yet he transformed into a gentle, kind and respectful young man. He even befriended another patient, a young 5-year-old girl who had a diagnosis of selective mutism. Yet Devon swore that she would talk to him. Sometimes when Devon was upset, he would have the nurse cover his face with his blanket so he could shut out the world. And then, this little 5-year-old friend would wheel up to him, rip off his blanket and smile at him. They would talk for hours. A true picture of “the lion” and “the lamb”.

Though the child life job description never seemed to get better at that hospital and the staff continued to be resistant, no matter what, meeting Devon and the relationship that budded made all the tearful train rides worth it. I wouldn’t have changed a thing.

Choosing to zero in on each individual patient ended up giving my work so much meaning and fulfillment, even if it didn’t feel like it at the time and even if I was still expected to solely plan parties. Because those patients didn’t just need a Halloween party or a fun game to play during therapy, they needed a child life specialist.

So for all of you who may be in a job that you hate, or be longing for a different opportunity, take a minute to look around and try to find your “Devon”. It will be worth it.

Continue reading →

Someone Who Looks Like Me

~ debvilasconsult ~ 4 Comments

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Early morning this past Tuesday, I squeezed onto the uptown #5 train on my way to the Immaculate Conception School in the South Bronx. The morning rush crowd swept me off the train at 149th Street and Third Avenue, and up the steps to a busy thoroughfare, where several streets spoked out in various directions. I made my way up a hill, heading north and west to where the school backed up against a Catholic church. The main school entrance opened onto a set of stairs, leading to a hallway where a receptionist at a small school desk pointed me up another two flights to the science room. Paper signs with arrows and CAREER DAY in bold print showed me the rest of the way, and I climbed the freshly painted cement steps, taking in the familiar smells and sounds of institutional cooking and children’s voices echoing through the high ceilinged halls.

The principal, Sr. Patrice, a longtime friend, and an avid Yankee fan, set down her coffee to greet me with a warm hug. My life partner is the school’s Board president, and this was not my first visit to the grammar school that holds a great reputation for its students continuing on to high school and college. In a neighborhood with highly segregated, low resourced public schools, this school provides an alternative pathway to children of all denominations.  Several other visitors, business people and alumni, sat at the round work tables on an assortment of chairs and stools, sipping coffee and nibbling at sweetbreads that I was thrilled to see. Breakfast had eluded me and I was starving.

I looked up from my croissant to see my friend enter the room. “Hey, Cassandra!”  I waved her over to my table. Cassandra is the executive director of the 163rd Street Improvement Council. They provide housing and supportive services for people with a variety of special needs. Cassandra is a fan of women’s basketball and attended Liberty games at Madison Square Garden in seats next to my partner. I’d met her when she invited us to her 60th birthday party, and we’d been Facebook friends ever since. I didn’t know her well, but I thought of her when I’d accepted the invitation to career day. At a previous career day, I’d noticed that there seemed to be a disproportionate amount of white speakers given the fact that most of the students were kids of color. I reached out to Cassandra in a transparent way, telling her I thought the kids might do better seeing more adults who looked like them. (See The Danger of a Single Story.) She accepted immediately, and here she was, excited and nervous about addressing the kids.

Sr. Patrice had us each booked in separate rooms with half hour talks over a two hour period. I began with the fifth graders, who were eager to learn about the wonderful profession of Child Life. I began by asking them how many of them had ever been hospitalized. Every hand in the room shot up, making me think about the healthcare disparities in poorer neighborhoods — chronic illnesses such as asthma being a common scourge.  I shared some stories about playing with sick children and showed them the ultimate child life fact — how once an IV is inserted, the needle retracts into the plastic holder and only a flexible plastic tube called a catheter remains in your vein. I brandished a real IV start to demonstrate, causing several kids to cringe in fear. Reassuring them that no one would get stuck with a needle by me, I passed around the catheter for them to examine, showing them how it was so small that a mouse could probably drink a milkshake through it. They brimmed over with questions.

  •  What do you do if a child doesn’t want to play?
  • Are all the kids really sick, or do some of them have like broken bones?
  • Do you sometimes feel sad?
  • What do you do when it is really hard?
  • What do you do if a child doesn’t get better?
  • How do you become a child life specialist?

Our time together had one dramatic interruption when a bird flew into the room and many of the children panicked and lept shrieking from their chairs. Sr. Patrice came to see what was causing such a commotion. Her calm and authoritative presence quieted the room so that we could continue. She gave me credit, saying how lucky it was that a child life specialist was there to calm the children, but I knew that she was the one with the magic powers.

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My next gig was a classroom of sixth graders. They’d been hosting several speakers before me and were a bit wound up by the time I arrived. So I got them out of their seats for some stretching before beginning my talk. This group had some questions, but they were more interested in telling their own stories of hospitalization. I listened as several children quietly shared about their medical encounters, which sounded scary and unpleasant. Some of them had met a child life specialist, but many hadn’t. One girl said, “Child life needs to come to Lincoln Hospital.” That was a great segue for me to talk about why the profession needed more people like them, who understood what their communities needed.

After our time with the kids, Cassandra and I met up back in the science room and trekked down the hill to part ways, she to her car and I to the subway. Her enthusiasm and joy for the day were clear – She’d had a blast with the students. We celebrated and documented our day by posing for a selfie in front of the church. IMG_5559

Two days later, Cassandra reached out on Facebook with this post:

Today I got a call from a parent of one of the kids from yesterday (Some of the kids asked for my business card). She called to thank me — her 14 year old came home excited about this person who was passionate and accomplished and “looked like me.”

I am so grateful to have been used in this way.

I am thinking that next year, I need to invite more people of color to join me, including child life specialists. Anyone want to join us? In the meantime, consider a  visit to your own neighborhood public schools to spread the good word and ignite the fire in the next generation of child lifers.

 

Driving the Camel: Installment #4

~ debvilasconsult ~ 13 Comments

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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 →

Driving the Camel: Adventures of a Child Life Specialist

~ debvilasconsult ~ 26 Comments

 

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Prologue

 

I have always thought of life as a spiral. We grow whether we want to or not, but not necessarily in a linear fashion. We encounter our unresolved issues again and again, and yet we develop at each turn, so that our challenges never look exactly the same to us as they did before. Sometimes, we might not even recognize them for what they are, our repeated opportunities to be whole, healed despite all of our woundedness.

My cancer diagnosis in 2013 was one such turn. It caught me unaware, and yet it provided me with opportunities to revisit my life and stretch beyond my comfort zone in ways I never could have imagined.  A writing program for cancer patients provided me with the structure to revisit my career as a child life specialist, mining memories for wonderful stories that serve to inspire and connect. These stories of the children and families who molded me into the professional I am, weave together in this book with my past and present encounters with the medical environment, as both patient and healer. They show the tender shoots of joy that can exist in the rich soil of pain and suffering. It is my life story, and the fibers of this narrative are the tales of children and people who have taught me so much over the years. I am ever indebted to their presence in my life.

Getting a book published is no easy accomplishment. One in eight women will be diagnosed with breast cancer at some point in their lives. Inspiring stories of survival and life after cancer have a wide audience in not only diagnosed women, but their friends, family and caregivers. However, the market is saturated with cancer narratives, and even though my spin as a child life specialist makes my  story stand out from the rest. it doesn’t mean the publishing world will bite. Being somewhat impulsive, and wanting my story and the good word about Child Life  to reach as many folks as possible, I have decided to use my blog to start the ball rolling. I will be publishing segments of my book on a weekly basis, except for breaks every once in a while for other topics. It is far from a perfect book. I am no Jodi Picoult or Anne Lamott (two of my favorite authors). But I do have something to say that I hope will touch and inspire some people out there. If you are moved, please share my story with your loved ones.

The names of many characters have been changed to protect their privacy.

 

Part One  Getting Better

Chapter 1: Two for One Sale

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My yellow lab-pit bull mix yanked hard on the leash as she lunged at a squirrel scampering across the Bridle Path. I reeled her back in, admonishing her with an angry “Gracie!” as I fumbled to secure my bluetooth headset. It was hard enough to hook the stupid plastic loop  over my ear without her pulling my arm off.

Mark answered on the first ring.

“I’ve got bilateral breast cancer,” I blurted out. I knew the second the words came out of my mouth that I should have waited to share this information with Mark. Waited at least until I was face to face with him, instead of walking our dog in Central Park and blathering into my cellphone. My life partner was driving to work in midtown traffic, certainly not in a good space to hear such awful news.

“I’ll be right home,” he said.

I’d known it was a possibility of course. A call back from the radiologist for another look and eight core biopsies  had my imagination running down all kinds of twisting paths. But with each turn, I’d say to myself, “It’s probably nothing. No use worrying until I know for sure.” I’d shift my focus to something more positive, try to stay in the present. Some might call that denial, but I like to see it as coping.

I finished my routine 1.6 mile loop around the reservoir and met Mark back at home. We sat in the lobby of our townhouse on the window seat, the sunlight sifting through the thick glass onto our clasped hands. I can’t remember why we did that, why we sat there instead of going upstairs to the privacy of our apartment. Maybe Mark had to return to work right away, or thought he had to. But for the time being, he was there, and I held his hand to anchor myself.

“What does this mean?” he asked. “What stage is it? What happens now?”

Mark’s questions mirrored my own, and I had few if any answers. I knew that I had tumors in both breasts, but I had no idea what stage or how far it had spread. I’d never felt a lump or had any symptoms. My annual mammogram and ultrasound had picked up the tiny images. I did know one thing. I was going to get on the phone right away and get an appointment with the premier cancer hospital that stood not twenty-five blocks from our home.  I had worked there for ten years, at the beginning of my career, and there was no question in my mind that I would get the best care there.

Mark ran his hand repeatedly through the scant hair on the top of his head. “I can’t believe this. I am so sorry. This is not what I expected.”

“Me neither, and I don’t even know what to think. This doesn’t feel real yet. I don’t even feel sick.”

“Well,” he said. “We will take care of this together.”

“Do you really think we will be okay?” I asked.

“You mean as a couple?” He hesitated. “I guess this is either going to bring us closer together, or pull us apart.”

Those might not have been the most romantic or reassuring words, but they were truthful. I’d heard some horror stories about spouses leaving their loved one after a breast cancer diagnosis, and we weren’t even married in the traditional sense of the word. Not your average mid-life couple, we’d been together for twenty-nine years, but had never taken that final leap of faith. As the eldest child of holocaust survivors,  Mark had grown up in the long shadow cast by unspeakable crimes committed against his family during World War II. In his world, marriage and family did not translate into the fairy tale vision of a comforting hearth. His mother had suffered from severe Post Traumatic Stress Disorder for most of Mark’s life, and as her primary caretaker, he had developed a hearty aversion to anything and everything having to do with hospitals, doctors and caretaking. My cancer would surely test our relationship’s rough edges.

“I choose closer, I said.”

We hugged tightly before he left for work, and I went upstairs to begin the process of finding a surgeon. Two days later, we walked into the hospital where I had spent ten years caring for cancer patients. I’d moved on to teach in a graduate program in Child Life, advising and instructing students as they practiced their clinical skills in area hospitals. But 16 years ago, as a child life specialist, I had helped children and families navigate the pitted path of cancer diagnosis, treatment, survival and at times, death. Child life specialists are trained in child development, family systems, bereavement, medical education, play techniques and ethnocultural issues. Armed with a degree in early childhood special education, with a concentration in child life, I worked to ease the suffering of children facing illness and hospitalization. Using play, I helped them understand what was going on with their bodies, acting out diagnoses and procedures on dolls using real and pretend medical equipment. I prepared them for everything from routine blood draws to amputations.

Play is so many things in the hospital: it is the language of children, the way they express what words cannot. It is how they process and make sense of the frightening things they experience in the unfamiliar medical setting. It is their way to keep being kids in the face of suffering way beyond what any child should endure. I used toys to shift their focus during painful procedures. I ran playgroups in a sunny and inviting playroom, where children donned stethoscopes, surgical masks and rubber gloves, becoming doctors caring for cloth doll patients.  I brought them activities  at the bedside when they were too sick or weak to leave their beds. At play, the children could be the masters of their universe and take back some of the control and power usurped by the necessity of medical treatment.

But today it was my turn to be the patient. As I pushed my way through the revolving doors of the very hospital where I had provided solace and healing, it struck me that I was the one in need of these things. Who was going to take care of me, the caretaker?  

Target Practice Part II

~ Deb Vilas ~ Leave a comment

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… Reentering Steven’s room, I stopped at the sink to fill the bedpan with warm water, placing the filled bedpan on Steven’s rolling bedside table. The sheets and towels went on the floor against the wall opposite the foot of his bed. Steven’s eyes followed my every movement, showing curiosity and anticipation

So, here’s the deal.” I said. “Lots of kids have stuff happen in the hospital that they find upsetting or scary. Sometimes it helps to get these feelings out in a physical way. I am setting up a target game, where you will get to throw wet toilet paper at what is upsetting you until it is completely destroyed. The question for you now is, do you want to destroy the drawing of your hand, or is there some other thing you could draw that you’d like to obliterate?”

Steven picked up a marker, so I brought over the big piece of chart paper. He got right down to work, drawing a huge needle that took up the entire sheet of paper.

“Oh,” I said. “That looks like the needle that might have to go in your hand.”

He nodded. When he finished, I took it from him and taped it on the wall opposite his bed.

“Now for the demonstration,” I said, reaching for the roll of toilet paper. “See, you take as much as you can to make a nice, big wad.” Continue reading →

Target Practice Part I

~ Deb Vilas ~ 1 Comment

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As a child life specialist, I’ve seen countless examples of play transforming a child’s mood in the hospital environment. I remember well the day when Steven lay curled in a ball beneath the covers in his hospital bed, his caffe latte bald head hiding beneath the sheets. He had not showed up in the playroom that afternoon, which was unusual. This was one of those kids who waited eagerly outside the door each day for the playroom to open and was often the last to skate his IV pole back to his room at the end of the day. I had yet to see Steven without a smile on his round, open face. He was a content child with a quiet maturity that went well beyond his seven years. He took his medical treatment in stride and enjoyed the company of his brother and sisters, as well as just about every activity the playroom had to offer.

But not this day. It was mid-afternoon and we had yet to see a glimpse of Steven. His mother stopped by and informed me that Steven had an infection in his Broviak catheter and that it would have to be surgically removed.

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Tilling

~ Deb Vilas ~ 2 Comments

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A cluster of school children spill onto the bridle path from an entrance on the upper west side of Manhattan. They emanate pent-up energy and their voices crescendo as they discover the reservoir vista. I register some mild annoyance at their squealing, but it only takes me a moment to recalibrate and appreciate their excitement. They overtake me and I walk for a bit beside the noisy group, eavesdropping on their exuberance and their teacher’s failing attempts to curtail it.

“Stop walking that way. Walk like this. Pick up your feet!” Continue reading →