The Children of Chanov and Lidice

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During my recent travels to the Czech Republic, I had the opportunity to learn about two populations that I knew little or nothing about: the children of Lidice and the children of Chanov. Our hosts, Jiri & Marketa Kralovec of the Klicek Foundation, arranged a day long outing to honor one group and to serve the other.

A few days prior, Marketa had given me a book

that told the story of the massacre of an entire village during World War II. It is a chilling and heartbreaking narrative of the fates of 82 children between the ages of 1 to 16. In response to the assassination of Reich Protector Reinhard Heydrich in 1942, the Nazis sought retribution by shooting all the men of Lidice (aged 15 and up), transporting the women to concentration camps, and murdering the children en mass by gassing them in a truck. Not even the dead were spared, their graves looted along with everyone’s homes and businesses, before the Nazis burned everything to the ground.

We arrived at the historical site of Lidice, the midday sun unrelenting in the early Spring heatwave. We made our way over rolling green lawns to the memorial (Pamatnik Lidice) that overlooks the expanse of land where the village once lay. No book could have prepared me for the impact of the life-sized collection of sculptures embodying the 82 murdered children. I stood before them and wept for these children and all those murdered during the Holocaust. I wept at the cruelty of human beings. I wept for the legacy that lives on in the DNA of my life partner, his parents having survived Auschwitz at the tender ages of 12 and 15. They could have been these children. In some ways, they were.

The artist Marie Uchytilová created the memorial in the 1990’s, but died before she was able to complete the sculptures. Jiri described paying a visit to their friend, Marie, during her selfless work. The haunting presence of the children’s likenesses in the fading light cast shadows as they drank tea and chatted late into the night. “She informed us that she often spoke to the children as she crafted their images,” Jiri said. “And she tried to find out everything she could about each one, so that she could truly fashion their souls.”

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We left the children and walked in silence back to the van.  We traveled on, stopping for a tour of the pediatric ward of a hospital before moving on to the last leg of our journey. We had little idea of what awaited us as we drove north west to Most in Bohemia and the Chanov housing estate. Of course Marketa had told us about our upcoming visit. Borivoj, (all names of patients and children have been changed to protect their privacy) a brain cancer survivor, had attended the Klicek  summer camp as an ill teen. Marketa and Jiri stayed in touch with Borivoj and his family, visiting them occasionally over the years. On one such visit, Marketa took notice of the many children of the neighborhood, hanging out with seemingly little to do. She was moved by their plight, and vowed to return to set up an afternoon of play on a monthly basis.

“No one goes there,” she said as she prepared food for our day’s journey. “It is the poorest and most dangerous part of the Czech Republic. If people do go there, it is to make themselves feel better, handing out candy and toys, and getting back in their cars, not really just being with the children or connecting with them.” As Marketa described the situation, I thought of the untouchables in India.

According to Wikipedia, “[t]he Chánov housing is these days perceived by many Czechs as among the worst examples of ghettoization of the Czech Romany population and has been described as “the housing estate of horror”, “a hygienic time bomb”, “a black stain” and the “Czech Bronx”. The Roma tenants of Chanov fare dreadfully in today’s Czech Republic, relegated to institutionalized country-wide discrimination, racism, marginalization and poverty. The Roma are largely unemployed.  94% of the people have only a primary education, if that.  38% of the population are children under the age of 15. 

Word of our coming had spread, and over 60 of these children and their parents greeted us as our van pulled up in front of the Chanov school, skirted by an astroturf football field. The children gathered eagerly and Marketa divided them into two groups, challenging them to a contest.

“All right!” she coached them. “Let’s see who has better English, the boys or the girls!” I was the designated judge, and the girls surrounded me eagerly. “My name is Anuska,” piped up one girl sporting polka dot shorts and a bright pink t-shirt emblazoned with the head of a blue giraffe. “What is your name?”  “What color are your eyes?” “One, two three…”  Other girls chimed in, counting up to fifteen with pride. “How old are you?” asked another. Then, they all started to sing, “Head and shoulders, knees and toes, knees and toes!”

The boys jockeyed for attention, keen to tease and one up one another in the process. “My name is…” began one, and several interrupted to shout him down with their own introductions. They jabbed and pushed one another, joking and laughing and even yanking down one boy’s shorts as they showed off their skills. Definitely a different energy than the girls!

Capitalizing on the bit if English they knew (way more than my Czech, I might add!)  I asked the children to show me some of their games, awkwardly pantomiming patty cake. After humoring me by joining in, the girls broke into a much more  intricate version, clapping their hands in a fast paced rhythm that left me in the dust. Then the kids introduced me to the game Baba (If I am spelling that right). Figuring out the rules was easy, as they ran up to me, tapped me none to gently on the back, yelled “Baba!” with great enthusiasm, and ran away from me. Oh, the Czech version of tag – I get it! In fact, there are many games that translate across cultures.

The children eventually broke off into smaller groups, some to draw on the parking lot with colored chalk that Marketa had brought, and some to start up a game of soccer. The play specialist volunteers set up a makeshift hair salon, brushing the girls’ hair and styling both boys and girls alike using many mini rubber bands.

Several children showed us their dancing skills, and my colleague, Marifer Busqueta from Mexico City, engaged them in a few Latina moves.

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One group of boys made their way to a large sand pit at the edge of the football field. They dragged over two box springs, the rusty inner workings of mattresses, piling them up to act as a springboard for their acrobatics. And so the real show of the day began. The boys, singly and in pairs, ran pell mell at the springs and leapt upon them, catapulting themselves into the air in arching flips and tumbles. They showed no fear, but my heart beat fast and hard in my chest as they flew past me, landing triumphantly in the sand. I couldn’t help but think of the framed photograph hanging in my bedroom back home of children in a 1980’s South Bronx  performing similar feats of daring.

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Towards the end of the day, Jiri Jr. corralled the kids into the cement bleachers to pose for a group photo.  There was homemade gingerbread for all, and one child split her treat in half to share with Marifer, before enjoying the sliver left over for her. We spent 4 hours altogether with the kids, before collapsing exhausted into the van and heading home to the comforts of Malejovice. Hot running water and electricity would greet us, although no such luxury awaited the children of Chanov. The joy of a day of cross-cultural play with wonderful kids lay juxtaposed in my mind with thoughts of children in historical and current contexts. When hate and racism allow us marginalize, ghettoize, and incarcerate a segment of any population, keeping them from sharing in the most basic of human rights (employment, access to medical care, decent living conditions and education), how far are we from enacting the fate of the children of Lidice upon our own children?

Medical Play: Modeling Empathy for your Child

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Colleague and friend, Teresa Schoell, is a child life specialist in upstate New York. She is featured in  “That’s Child Life!” , a video published by the Child  Life Council. She is also, first and foremost, a mother to Malcolm. She posted this story on FaceBook today, and with her permission (and Malcolm’s), I wanted to share it with all of you.

I just finished performing surgery on one of Malcolm’s beloved stuffies (a gift from the dear Justinn Walker). Apparently, JC the Lobster was quite anxious about the procedure, hiding in Malcolm’s arms while I threaded my needle.

“I’m scared it’s going to hurt,” came JC’s voice (with a marked similarity to Malcolm’s falsetto).

Then I heard Malcolm’s reassuring voice “Don’t worry, JC, we’ll give you sleep medicine so you don’t feel anything. Would a hug help you feel brave?”

A few hugs and and some invisible anesthesia later, the lobster was open on my table (prepped and draped in the usual sterile fashion….which is to say, laying on a couch cushion on my lap) Today’s procedure was to repair the distal fracture to the bendy wire in the patient’s left antenna, which supports movement and pose-ability.

Under general anesthesia I opened and peeled back the fabric, revealing the damaged wire. The sharp wire bits were realigned and repaired use med-surg duct tape, reinserted into the fabric, and sealed with a running subcuticular suture (sewed on the inside for a near-invisible scar). Procedure complete in 15 minutes with minimal stuffing loss. Patient resting comfortably.

 

I commend how Teresa invested in Malcolm’s powers of imagination and attachment by treating JC the Lobster with the respect one would give a live patient. When parents take their child’s attachments and emotional needs seriously, they model empathy, the glue that holds our society together.

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The Child Life Maker Movement: Loose Parts Impacting Healthcare

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What happens when you cross a child life specialist with loose parts? Creativity, to say the very least. Specialists have been using loose parts to make the medical world more accessible and friendly for children and families since the beginning of our profession. They combine medical supplies (tubing, gauze, rubber gloves) and household items (paper towel rolls, pipe cleaners, paper clips, felt) to create everything from customized dolls that reflect a child’s medical situation, to a glove-o-phone to help children pass breathing tests. Simple and complex inventions have aided children in making meaning out of their medical experiences.

 

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Now, with the Maker Movement, child life specialists have invaluable opportunities to join brains with other disciplines seeking to improve patient experience and speed recovery.   Bank Street College Child Life alumnae Jon Luongo and Kelly Segar, and children’s book author Anastasia Higginbotham rolled up their sleeves to join the Maker Faire at The New York Hall of Science this past weekend. They joined nurses, doctors, medical technicians and fellow inventors in the Health Maker tent on this brisk and cloudy autumn day.

As children and caregivers meandered through the exhibits, .the specialists shared information about how to make pediatric hospital stays more manageable, less stressful, and more fun. As Jon demonstrated the glove-o-phone, kids jumped at the unexpectedly loud honk it made.

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Exclamations of “Ewww gross!” were followed by attentive curiosity as Jon explained the purpose of the vial of “blood soup” on the table.

 

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Families spontaneously grabbed colorful neon strings and engaged in string play, a simple game that crosses generations, culture and language around the world.

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Kelly demonstrated her Barium Bear, “Barry”, developed to support children receiving barium enemas and scans. She used simple circuitry that she learned from a Hospital Play Specialist in Japan to illuminate the pretend scan.

 

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At nearby tables, radiation techs and doctors showcased how legos can be used to build mini MRI, CT-Scan, and linear accelerator machines. When they are doll sized, they aren’t quite so scary. And when children aren’t as frightened, doctors can administer less anesthesia to their tiny patients, a win-win for everyone.

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Did you know that a A three-D printer can be used to make prosthetic hands for children who have lost theirs to birth defects, disease or accidents? And for a fraction of the cost of traditional prosthetics. And they aren’t just your run of the mill hands either. They are superhero hands! As I observed a three-D printer humming away at one exhibit, I wondered about what kind of mind came up with the idea of this machine. And then who had the amazing idea about the possible application of it in the medical world?

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Wonderful ideas start somewhere, and when we encourage children to explore and create, even in the medical environment, we are investing in their healing and in their future. The Maker Faire was an extraordinary celebration of the possibilities of the human brain. From low-tech to high-tech, creative minds came together in the Health Lab tent to hack medical problems and make the healing process more fun. If you want to get your maker on, I encourage you to find maker spaces near you Challenge your child life staff to a loose parts contest at the next departmental meeting. Jumpstart a health maker group in your hospital and invite staff from throughout the institution to collaborate. And don’t forget your best assets. Find every opportunity to include children in creative problem solving with loose parts. In and out of the healthcare field, children and adults all benefit when we connect with what Eleanor Duckworth called “wonderful ideas.”

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Driving the Camel: Installment #15

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Heading South

We arrived at the beach house, where Marianne and her family had returned for the weekend. We gathered around the kitchen table telling stories of our adventures, but I already felt removed from the day’s events.  My thoughts turned inward as I anticipated saying goodbye to Garth. I knew that when the iced tea was gone, that Garth would be driving back to Clair and his farm, and that I may never see him again.

When the time came, I dragged my feet as I walked him out to his car.

“You know I wouldn’t have taken just anyone caving,” Garth said.

“Yeah, you said you hadn’t done it in a long time, What made you say yes to me?”

“It was just something about your voice,” he answered. “I liked your voice and your spirit.”

He surprised me with a hug so hard that I thought I might break in two.

As he drove off down the beach road, I thought about the many types of love we experience, if we are lucky, throughout our lives. The depth of feelings generated by  the unexpected connection forged with Garth was not unlike some of the strong emotional currents I have often felt with children passing through my care in hospitals. I’ve often wondered if it’s just me. Do I fall in love a thousand times too easily? Or do others feel the pangs and elation that I do when my spirit resonates with someone else’s, stranger or friend, child or adult?

One thing for sure, it was not easy to part with such a wonderful new friend and to leave the beauty and peace of Lang’s Beach.  But leave I did. Matt and his family awaited me in Christchurch and Naomi waited in Kaikoura. Naomi had been another guide on our kayaking trip. She’d since visited us in New York, and now it was time to check out her stomping grounds on the South Island. Then, hard to imagine now, I would be heading home.

The plot twist for this leg of my  journey was all my bad. I managed to miss my plane by misreading my itinerary. As Marianne and her husband drove me to the airport, I figured out the mistake. My heart sped up as I realized that there was no way in hell I was going to make my plane. Marianne pulled up across the street from the terminal and popped the trunk. Our goodbye was hasty as I grabbed my suitcase and futilely ran across the street and through the glass doors, trying to breathe deeply and slowly to calm myself down.

The ticket agent smiled at me as I struggled with my suitcases and my passport.

“Don’t worry, you can just hop on the next plane in an hour.”

“How much will that cost?” I asked warily.

“Nothing. This isn’t a problem,” she answered.

And much to my amazement and relief,  it wasn’t. Catching the next departure, I settled into a window seat on the small commuter plane. It was a short flight through bright afternoon skies,  the South Island rising up to greet me as the plane touched down in Christchurch. A shuttle bus gave me a glimpse of the city as it made multiple stops on the way to  the hotel, a sleek, modern box not too far from the airport. I splurged on room service for dinner and then sank gratefully into the clean sheets, setting my phone alarm for early the next morning.  

The ringtone of Natalie Merchant’s Wonder wafted into my consciousness at 7am. I was so excited to see Matt, and I also wanted to make sure that I had time to eat breakfast and write in my journal. A few hours later, as I waited for  in the lobby, I wondered what it would be like to hang out with him and Helen. Would we click the way we had out on the Strait? Would it be awkward? How much time could they spend with me and how much time would I be alone? I assumed they were busy people between work and having two kids. That relentless anxiety of being on my own crept in, smudging over the recent accomplishments of  my alone time at Lang’s Beach.

But all worries evaporated when I saw Matt. I hugged him unabashedly and our friendship commenced right where it had left off six years ago.

Matt’s mother-in-law and his twin eleven month-old daughters awaited us in the car. We toured Christchurch, stopping at the makeshift temporary church that the diocese erected when the 2011 earthquake rendered the original Christ Church uninhabitable. 185 People died in the second deadliest earthquake in the country’s history, and the city had far from recovered. The devastation of the city was heartbreaking. Two years following the earthquake of 2011 and there were still many empty lots filled with rubble and ruined buildings gaping in despair. Matt said it will take twenty years to rebuild.

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We ate lunch in Lyttelton before we followed the winding road to a sweet, small town on the coast. The neighbor’s cottage abutted  Matt and Helen’s property on a quiet country road flanked by horse meadows and a dune- fringed beach. The cottage overlooked an enchanting garden, fully equipped with a tub and a fire pit underneath for outdoor bathing.

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Worries about being lonely were unfounded and quickly soothed. The cottage provided the perfect balance of privacy and proximity to Matt and Helen’s cozy home.  A routine quickly formed – tea and cereal in the garden, accompanied by birdsong, and the occasional squawk from the neighboring rooster. I meditated and journaled before skyping in with Mark. Then, I would close up the cabin and trot around the corner to Matt and Helen’s house, hitching open the quaint latched gate to their yard, and ruffling their dog’s ears as I passed her on the porch.  

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Over the week, I enjoyed witnessing the rhythm of their family life. They had a brilliant schedule for the twins, with Matt taking on the lion’s share of parenting while Helen worked as an administrator at the airport. The presence of Helen’s mom made it possible for Matt to spirit me away for some outdoors sightseeing, which was such an unexpected treat for me.. Matt had some adventures lined up  for us and we discussed the possibilities over dinner that first night. We settled on plans for more cave exploration and a day trip to Arthur’s Pass in the South Andes Mountains.

Our drive out to the mountains gave us plenty of time to catch up on each other’s lives and get to know one another better. Much like this New Zealand adventure, my camping trip on the Johnstone Strait in British Columbia with Matt had been an amalgamation of firsts for me: first attempt at ocean kayaking, first camping trip, first vacation with a friend without Mark along. Like a younger version of Garth, Matt was a skilled guide accustomed to amateurs. He knew how to meet me at my skill level and scaffold me to higher performance and more endurance. His patience, kindness, and sense of humor boosted me out of my comfort zone, and I was able to withstand eight-hour paddles in rough water. In a few short days, I went from tentative paddling in a double kayak to coasting solo on the wake of a giant cruise ship, yelling “Yeehah!”

 

During my cancer treatment, I’d recalled my initial fears of that adventure and how I had faced them with Matt’s support. The memory of how far I had come, the confidence in my body, and the strength that I developed on that kayaking trip, all became a reminder for me as I faced scary firsts in treatment. I told myself repeatedly that I could face the unknown and do scary things with the right support. Meeting up with Matt on the other side of the world now, after surviving cancer, felt like coming  full circle. Our conversations on the mountain drive gave me the opportunity to thank him for all he’d done for me back on the Strait and explain how it reverberated throughout my medical experience.

A panoramic view of mountains, foothills, and clouds surrounded us, as we pulled into the parking lot adjacent to the cave trailhead.  I grabbed my gear and headed to the public bathroom to change into appropriate caving apparel. Matt had supplied headlamps, neoprene gloves and booties, fleece leggings, long underwear and “jumpers,” waterproof outer gear, and woolen hats. As I pulled on my layers, I thought about the trust I placed in him to keep me safe, first on the Strait, and now entering into an underground cavern. I had trusted the doctors at the hospital as well, as I followed the dark pathway of their many-layered regimens for ridding my body of cancer. Garth came to mind too, and how he’d met my trust with so much appreciation, respect and humor.  A synergy between vulnerability, trust and risk taking unfolded before me in all of these experiences. The Universe was asking me to do my part, while supplying all the necessary support in order to make all things possible. I strapped on my headlamp and headed out to meet my next adventure.

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Dear newcomers to my blog,

Driving the Camel is a memoir that I am publishing as a serial on this blog. It follows my adventures as a child life specialist during a transformative year of my life when I battled breast cancer and travelled the world. It includes reflections on my past work as a child life specialist, my personal life and stories of the wonderful people I met on my travels. You can find previous chapters in the side menu categories (or scroll down on mobile devices) under “Driving the Camel: Adventures of a Child Life Specialist.

Driving the Camel: Installment #14

 

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When my feet finally touched the ground, I shouted “I did it!”

“Yes you did!” said Garth.

I heard clapping and cheering behind me. I looked up to see four young people standing just outside the cave’s entrance. I waved to them and one yelled out, “I caught it all on film!” While Garth tramped back up the hill to retrieve the ropes, I chatted with the photographer and her friends, and exchanged e-mail addresses so that they could send me the photos.

 

“Can you take a photo of us,” the photographer asked me.  She set up the shot, handed me her camera, and joined her friends at the mouth of the cave.

“We are training for a Christian mission abroad,” she said as I gave back her camera.”

“That’s so exciting. I’ll be going on a mission myself in a few weeks, a medical mission to help kids in the Middle East.”

“If you don’t mind, we’d like to pray for you.”

“Sure,” I said, as I turned to leave. “And I will say a prayer for you guys.”

“No, we meant now. Can we gather now and lay our hands on you in prayer?”

I was a bit taken aback, but thought, what the heck? It couldn’t hurt.

I nodded and they surrounded me. They placed their hands on my shoulders and head. The young photographer led the prayer.

“May God bless you and keep you, filling you with strength and courage to do his work. May you be safe and secure in your mission to help those in need”.

I felt myself tearing up as the power of their words and touch moved through me. My father is a minister and I grew up with the comfort of his hand on my forehead and his prayers each night. As strange as this odd encounter with young missionaries seemed, it felt familiar and safe. I was happy to carry their prayers and good will with me.

Garth and I met up back at the car. I reached into my purse for my wallet. We’d negotiated a price for our first expedition, and I wanted to pay him for his time today.

Garth held up his hand. “ No way,” he said. “Yesterday you had a “C” price rating. Today, you’re an “F”

“I don’t get it,” I said.

“Yesterday, you were a ‘c’  for client. Today, “you’re an ‘f’ for friend. No charge.”

I put my wallet away.

“So, what was your favorite part today?” I asked him.  “Was it when I was dangling there like a Christmas ornament?”

“Nope,” he said. “It was when you were terrified and you did it anyway.”

I smiled as I took that in, holding tight to the strength that he mirrored back to me. I felt nourished by Garth’s words and the missionaries’ prayers. I contemplated the kindness present in the world as we bounced along the rutted dirt road and turned back onto the main thoroughfare.

Like Garth had done for me, I’d had the honor of witnessing and supporting children facing some pretty scary things. Playing with children facing illness and treatment, the unfathomable became more manageable. A child came to mind who I’d worked with years ago, a war refugee from Bosnia, his family facing a different kind of war when their son was diagnosed with cancer. Five year-old Serge and his family had traveled a great distance and suffered many hardships before his medical diagnosis. Caught in the midst of the Bosnian war in the mid-1990s and forced to flee from their home, the family lost possessions, their livelihood, and many friends and family members. While refugees in their own country, Ivan and Hana discovered a lump in their son’s left foot. The doctors in Belgrade diagnosed it as an invasive, cancerous tumor. As a physician, Ivan knew that his son needed aggressive treatment. He managed to obtain refugee status in the United States, and he, his wife, Hana, Serge, and his ten year-old brother, Davud, found their way to New York City and the hospital where I worked.

I searched for ways to connect with this family. A friend gave me some great advice.

“Learn a few common phrases in his language,” said Petar. “It will make him feel more at home, and show the family that you care.”

I couldn’t imagine being able to pronounce their language with any accuracy and I told him as much.

“It doesn’t matter,” said Petar. “It’s the trying that counts.”

He  taught me how to say hello and goodbye, and how to ask, “How are you today?” and “What would you like to play with?” These may have been only a handful of phrases, but when I haltingly mispronounced them, Serge would smile, laugh, and answer me in rapid Serbo-Croatian.

One day, Serge and I played Yahtzee Jr. in the clinic, while he received his chemotherapy. His mother sat close by reading and chatting with me. Yahtzee is a game that requires little or no spoken language and we played easily together, enjoying the clack and roll of the dice. Hana and I conversed in English, and soon, a cross expression appeared on Serge’s face. I could tell something bothered him and assumed that it was my lack of complete attention. I encouraged Hana to ask Serge what was wrong and an animated conversation ensued between them as I sat holding my dice.

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“He is angry with you because he knows you speak his language and he wants to know why you insist on speaking English with me,” Hana explained.

I asked Hana to translate for me and dove in.

“Oh, I get it, Serge! I asked how you are and what you’d like to play with in Serbo-Croatian. It must feel like I am leaving you out when I speak English with your mom.”

Serge nodded, so I continued.

“I only know how to say a few things in your language because a friend taught me. So, I have to speak English the rest of the time. But I will try harder not to leave you out of the conversation. And maybe you can teach me how to say a few more things in your language.”

Serge grinned at me and shook his dice.

“You are ready to get back to the game,” I said and followed his lead.

I admired Serge’s strong sense of self and was not surprised when Ivan shared a story of his son’s experience in the Belgrade hospital that exemplified his spirit. The Serbian hospital had strict visiting hours and Ivan and Hana were not allowed to spend nights at their son’s bedside. When Ivan arrived early one morning, the nurse on duty reported that she had caught Serge attempting to leave the hospital the previous night. Serge had limped into an elevator and would have been long gone if not for the nurse’s quick actions.

Ivan approached his son and put his arm around his son’s small shoulders. “What do you think you were doing last night?”

“My foot hurt. I don’t like it here, so I was going home.”

  “Home,” his father repeated. “And how do you think you were going to get there?”

“I was going to take a taxi. I know my address,” he said.

Ivan continued his excavation. “Hmm, yes you do, but let me ask you this. How were you going to pay for the taxi?”

  “Well, you would have paid for it when I got there of course!” Serge said.

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  Ivan told this story with pride and I enjoyed hearing his narrative of Serge’s resilience. The whole family embraced a positive attitude towards their son’s illness and their lives in general. When devastating medical news arrived, that Serge’s foot required an amputation, they remained calm and open with their son about the impending amputation. Entering Serge’s inpatient room the day before surgery, I found a helium Garfield the Cat balloon. Ivan had removed Garfield’s left foot, a playful and creative action that indicated their willingness to discussing the amputation with their children.

This is a tribute to Serge’s adaptability and determined attitude, and his parents’ ability to value these strengths and to act accordingly. Many parents avoid speaking with their children about imminent frightening procedures. They believe that the way to protect their child from upsetting experiences is to avoid the topic at all costs. The downside of secrecy is that these children wake up with pain and changes in their bodies, and simultaneously encounter a loss of trust in their support system. For many children, this can be as devastating and irrevocable as the loss of a limb.

As I would with Serge, child life specialists routinely use their knowledge about child development to appropriately prepare children for procedures. We partner with parents to tell kids what they will see, hear, feel, smell, and taste, because children experience their surroundings through the five senses. We calibrate our language to match the developmental age of the child, and we continually assess how the child is responding to and coping with the information. Just like adults, some kids want to know a lot of details; some do not. But all children feel safer when they know what to expect and who will be there to support them.

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On that day, my goal was to prepare Serge and his family for surgery through the use of play. Speaking to children through the language of play makes every topic less scary and provides opportunities for them to roll up their sleeves and take charge of their medical experiences. Interactive play deepens the learning and gives the child opportunities to construct their own understanding and interpretation of the events they are facing. It also gives them a safe venue to ask questions and express concerns. Play empowers children to evolve from passive recipients of medical care to active participants in their own healing.

I explained my motives and plan to them. Serge and his brother, Davud, joined me in donning surgical garb, gowns, gloves, hats, masks, and booties.

“This is the patient,” I said, pointing to the doll, “and he needs his left foot amputated. We are going to give him anesthesia and perform the surgery right here.”

As I spoke, his mother  cleared a place for the doll on Serge’s rolling bedside table, removing his lunch tray and set it on the windowsill.

Without my asking, Davud leapt in to interpret for his brother, so I continued. “You guys can be whoever you want: the surgeon, the nurse, the parent. And you can tell me who I should be, as well. It’s also okay to just watch if you want.”

“I’ll be the surgeon,” Davud immediately stated.  

Uncharacteristically, Serge hung back.

“You can watch Davud start, and jump in at any time you want,” I said. “Now, since this doll doesn’t have a face or clothes, I thought we might begin by decorating him.”

I handed the boys a bin of markers.

“I’m wondering how this guy is feeling and what kind of expression you should put on his face.”

Davud turned to Serge to get his opinion. Serge piped in in rapid Serbo-Croatian.

“Serge says that the patient is scared, so I think he needs a sad face.”

He busied himself with decorating the doll.

With my guidance, Davud enacted the steps of preparing the doll for surgery, checking the patient’s ID, marking the foot to be removed, and administering the anesthesia through a mask. I explained the difference between regular and anesthetized sleep, and at my encouragement, Davud playfully shouted in the doll’s ear to make sure that he was indeed asleep. By this point, Serge began to reach for the medical implements, offering his brother suggestions. When it came time to actually amputate the doll’s foot, the boys worked together to manipulate the scissors, remove the stuffing, thread the needle, and sew and bandage the wound.

 

Many adults struggle with the idea of broaching medical topics with children. But what is awkward and frightening for adults may not be so for children. Kids play freely and happily when given permission, suitable tools, and an encouraging atmosphere. During the pretend surgery, Davud and Serge were animated, interactive, present, and curious. After Serge’s initial hesitance, the boys became deeply immersed in the activity, asking questions about the surgery and what would come afterwards. Their father and I took turns answering their questions, with Ivan’s medical background filling in gaps in my information. When I asked Serge what he would like to do with the doll’s amputated foot, he suggested wrapping it in tissue paper and placing it in a box for safekeeping. I provided the box and tissues, and Serge and Davud went about this task with quiet reverence.

Those boys and their parents are forever in my heart, and I picture them, bent over that doll, whenever I teach a child life student how to prepare a child for an amputation using play.

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Dear newcomers to my blog,

Driving the Camel is a memoir that I am publishing as a serial on this blog. It follows my adventures as a child life specialist during a transformative year of my life when I battled breast cancer and travelled the world. It includes reflections on my past work as a child life specialist, my personal life and stories of the wonderful people I met on my travels. You can find previous chapters in the side menu categories (or scroll down on mobile devices) under “Driving the Camel: Adventures of a Child Life Specialist.

 

Driving the Camel: Installment #12

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 Alpacas and Chooks

The house where Garth and Clair had recently retired  perched on top of a gentle hill, their farmland spreading out below. Cattle chewed grass by the side of a pond surrounded by cattails and high grass. As we pulled into the unpaved driveway, a black lab with a greying muzzle wiggled in delight as she approached the car. A great blue heron  perched on their well pump. It didn’t ruffle a feather as we passed it. Three alpacas peered at us from behind a fence. I turned to Garth.

“Are you sure Clair won’t mind being surprised by an unannounced guest?” I asked.

“Clair loves guests!” he bellowed. I wondered if she really did, or if Garth might be a bit clueless about the stress that unexpected guests can put on a wife. But the moment I stepped into their home, I could see he was far from clueless. Continue reading

Death may be stupid, but kids aren’t.

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This week, Shani Thornton (aka Child Life Mommy) and I brought Child Life services beyond hospital walls into our community. Via a referral from Jen Holahan, CCLS, a parent invited Shani to do some bereavement work at a girls and boys club.  A staff member and former member of the club had recently died unexpectedly, and the kids and staff  needed support. Shani reached out to me and asked if I would join her. How could I say no?

We armed ourselves with Anastasia Higginbotham’s book Death is Stupid, 3 rolls of toilet paper and Shani’s years of experience volunteering with bereaved children at Center for Hope. Our plan of action included a read aloud, followed by a group mural where  the school-aged children could express any of their many feelings about their beloved mentor’s death. The club supplied a huge roll of white butcher paper, paint, crayons, markers, glue, yarn, glitter, pompons, and googly eyes. The kids supplied their hearts.

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In addition to the mural, we set up a toilet paper target station in a corner away from the art activity.  Kids could draw what was making them sad, angry or afraid, and then wail away at the target with sopping wads of water-logged toilet paper.

What did we discover? Well, first, the children joined us in a circle of chairs for the reading of the book. Some teared up while others got silly. We staid our course and refrained from redirecting any of it. We were surprised when almost all of them raised their hands when asked if they knew others who had died. Many relatives and pets had already paved the way for this loss.

Then we set them loose on the mural. They dug deep quickly, drawing and writing about their feelings and memories about the young man who had died at the tender age of 21. They told us stories of things they had done with him, what he enjoyed, how he had helped them with their homework. They talked openly about feeling sad and angry. One tween drew a heart, wrote “Death is Stupid” in the middle of the heart, and then crossed out ‘Stupid’ and added the words scary, mean, weird, confusing and heartbreaking.

Those who weren’t quite ready to join in the mural found solace in the target game, something that allowed for a more physical, visceral release of emotions. “I hate death” they wrote on the target. “Come Back!” One child drew a picture of himself crying, and then decided to cut the drawing off of the target, so that it would not be ruined by the wet toilet paper. Their bodies danced in anticipation as they lined up to take their turns spooling toilet paper around their fists. The toilet paper flew, splatting with satisfying force again and again, as emotion propelled major league-worthy arms.

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When the smoke cleared, every child had contributed to both the mural and the target practice. We regathered in the circle, where Shani reminded them who they can speak to about their feelings as time goes on. The kids named their parents, counsellors, teachers and one another. We held hands and shouted their friend’s name as a final ritual.

Kids know what they need. When adults provide them with space, time, materials and a listening ear, kids know exactly what to do. They need to talk about the person they lost. They need to know that the adults in their lives can hear them without turning away or handing out platitudes. They need to know that they are normal, that their thoughts and feelings aren’t bad or wrong. And they need to know that the feelings will come and go, and that it’s okay to play and have fun anyway, even amidst the sadness.

After the room had emptied, as we scraped wet toilet paper off the cinder block walls, Shani said, “Isn’t this exactly where child life belongs?!”

Yes, my dear friend. This is exactly where it belongs, in the community where the children live day in and day out, and where death is stupid, scary, mean, weird, confusing and heartbreaking.

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Paper Tigers

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What are paper tigers? Well, they refer to a byproduct of trauma. When kids grow up in environments where toxic stress is an everyday occurrence, their brains wire to keep them in a constant state of fight or flight. They are perpetually on edge, vigilant in assessing their surroundings for dangers, real or imagined. The imagined dangers are paper tigers, not real but emanating from traumatic experiences and just as threatening as a raised fist or an unwanted touch.

The documentary Paper Tigers depicts a school in Walla Walla Washington where teachers and leaders have found a new way to reach and teach kids who see paper tigers around every corner. Instead of responding to acting out teens with punishing discipline, they seek to understand the adverse childhood experiences or ACEs that effect their students and get in the way of their learning.

More than two decades ago, two respected researchers, clinical physician Dr. Vincent Felitti and CDC epidemiologist Robert Anda, published the game-changing Adverse Childhood Experiences Study. It revealed a troubling but irrefutable phenomenon: the more traumatic experiences the respondents had as children (such as physical and emotional abuse and neglect), the more likely they were to develop health problems later in life—problems such as cancer, heart disease, and high blood pressure. To complicate matters, there was also a troubling correlation between adverse childhood experiences and prevalence of drug and alcohol abuse, unprotected sex, and poor diet. Combined, the results of the study painted a staggering portrait of the price our children are paying for growing up in unsafe environments, all the while adding fuel to the fire of some of society’s greatest challenges.    (http://kpjrfilms.co/paper-tigers/about-the-film/)

Adverse Childhood Experiences include eight experiences that impact future health and longevity of children. They fall into three categories: Abuse, Neglect and Household Dysfunction. The eight ACEs are physical, emotional or sexual abuse, physical or emotional neglect, and whether mental illness, the incarceration of a relative, domestic violence, substance abuse or divorce are present in the home environment. The more ACEs present, the worse the outcome.

That’s the bad news.

The good news is that something can be done. Trauma informed therapy and emotionally responsive teaching are two interventions that can buld resiliency in children facing traumatic stress.

Last night I had the pleasure of sitting on a panel made up of policy makers and practitioners  who work tirelessly to address the inequities that perpetuate toxic environments for large numbers of our country’s children. The US rates number two in developed countries for  how many children live in poverty, second only to Romania. In my eyes that is nothing short of a crime. Poverty is the single highest variable coralated with ACEs.

We screened the movie for a standing room only audience at the Grace Church School in Cooper Square in lower Manhattan. Moderator Andrew Solomon, the Pulitzer Prize finalist and author of Far From the Tree: Parents, Children, and the Search for Identity, led us in a lively discussion of the film, fielding questions from an audience of parents, teachers and community leaders.The event was sponsored by many schools and community organizations, including The First Presbyterian Church, Go Project, St. Francis Xavier Catholic Church, NIP Professional Association, Academy of St. Joseph, Prevent Child Abuse New York and the Corlears School. The room was filled with caring citizens who want to see change. Teachers spoke about their own trauma in working with troubled children in broken schools with no resources or administrative support.

Joy Farina Foskett, the organizer of this important event, reminded us all that ACEs cross all socioeconomic boundaries and exist in every culture. Some of the panelists themselves spoke to the ACE of divorce in their own families. We listed some valuable resources in the program: community organizations, websites and books. Included in the list are “Divorce is the Worst” and “Death is Stupid”, two great books by Anastasia Higginbotham, that help adults open up important conversations with children who may suffer alone through painful ACEs. Kathleen McCue’s “How to help Children Through a Parent’s serious Illness” is another great resource to assist parents and teachers.

Trauma informed, emotionally responsive teaching seems like a no brainer. It doesn’t cost more money, and it prevents costly medical care, incarceration and strengthens our country’s most valuable asset, our children. If it worked with teens who’d already been labeled as unreachable and no good, how much more could it do within early childhood settings? In Early Intervention?

We were all left with one question on our minds. Why isn’t every school in the country following in the footsteps of Lincoln Alternative High School? What are we waiting for?

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Driving the Camel: Installment #5

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Chapter 4: You Have to Point it Down

Of course not everything revolved around my cancer. Life has a way of constantly unfolding in and around crises, and one of my dearest friends was on the cusp of a wonderful life transition. I’d known Isabel since my days in graduate school when we acted as course assistants for a beloved professor and mentor. When I received the call to teach at the college, I’d invited Isabel to co-teach with me. Our friendship had grown from there. We’d shared many meals deep in conversation about our lives, sipping sake and sharing our mutual adoration of food. She encouraged me to step out of my comfort zone and we’d gone on yearly vacations together, exploring places I had never even thought of visiting.  But all throughout those fun times, she had always wanted to be a mother. As an early childhood educator, she visited the homes of families and performed assessments for infants and toddlers with suspected delays. Isabel loved babies more than anyone I knew, but at the age of 46, had yet to find a mate who shared her dreams of family.  

The year before I got sick, Isabel made the announcement that she would go it alone and began the laborious process of applying to be an adoptive parent. I drove her to the adoption agency located in Pennsylvania, so that she could make a video to be shown to prospective birth parents. It was a sunny spring day and we enjoyed escaping the city as we headed southwest through New Jersey. Continue reading

Is Reblogging like Regifting? Here is Teacher Tom: Eleven Things To Say Instead Of ‘Be Careful’

 

Forgive me for reblogging someone else’s great ideas today. But Teacher Tom’s words and images of children enjoying “risky” outdoor loose parts play moved me. And he has such great suggestions for how caregivers can help kids take good risks and explore their worlds unafraid, even as they learn how to be safe and think through their play. Thank you Tom! Click below for his article.

Source: Teacher Tom: Eleven Things To Say Instead Of ‘Be Careful’