Get Well Maps: Road to Recovery

ChildInspired-2

Please welcome our guest blogger, Christina Connors, who I interviewed after she connected with me on Linked In and sent me samples of her incredible Get Well Maps.

What inspired you to create these maps? My son’s medical experience in 2014, and my desire to help other children and families facing medical challenges, inspired me to create Get Well Maps. Andrew was 5 years old when he was hospitalized with bilateral pneumonia and H1N1 flu, and his condition quickly became life threatening. He was air lifted to our closest pediatric hospital (~2 hours away) and was transferred to the PICU secondary to respiratory failure. I felt completely helpless to care for him. There were so many uncertainties. My “Mama Bear” impulses were raging, and yet my background as an Occupational Therapist was underpinning every effort I made to advocate for my child.

IMG_0635

I felt compelled to have a visual that would depict his “Road Home”, because despite the uncertainty of prognosis, timeline or discharge plan, we needed to SEE our goal of getting home in the midst of adversity. I asked my childhood friend to make a map that had a road, photo of our home and matchbox car to move along as his condition progressed (My son has always loved anything with wheels). She was eager to do anything to help, but found it strange that my request of her was a “craft project” (Child Life Specialists & OTs get it). She graciously obliged, anyways. What began as a desperate mother’s attempt to provide a tool to help her child, began to draw interest from his medical team, and sparked communication that connected us throughout his care (“Is that your house?”, “Do you like to play outside?”, “Buddy, you’ve already rounded that bend”…). It was months after our experience, and after becoming involved in our pediatric hospital’s Family Advisory Committee, that another parent encouraged me to develop this idea in a way that would help other children and families throughout their medical experiences.

IMG_0618

What was the process like from your idea to creating the product and your company? I would be lying if I said I wasn’t scared! I was exposing a time in our family’s life that held much vulnerability. But I was also excited about the possibility of having a creative outlet that helped me process our experience in a way that helped others. My faith was strengthened by our experience, and I felt like I was being called into this work. I felt that this was a unique opportunity to combine my experience as a parent and healthcare professional (& my husband is an educator) to make a positive impact in the healthcare experiences of other children and families. I began slowly. Brainstorming, then drafting prototypes, researching materials, production options, searching for the right illustrator, and learning the basics of establishing a business. I use the analogy of a foggy road when I think about the process of transforming an idea into a company, and even now as I continue to navigate and evolve. I can’t always see where I am headed because the road is foggy, but when I have faith enough to move forward, the fog lifts briefly and becomes a little clearer just in front of me, which in turn gives me the confidence to keep going. (Just can’t seem to get away from the road/car analogies!)

Can you tell us a bit about your work as an OT and your experience as a mom? I graduated from the Occupational Therapy program at Towson University in 2002, and have been practicing as an Occupational Therapist for 15 years. I became interested in Occupational Therapy after my Aunt was in a car accident and sustained a C4-C5 spinal cord injury. It was the 1st time my family was truly impacted by disability and I was inspired to learn more about the professionals that were helping her. Since beginning my career as an OT, I have always had an equal love of pediatric and adult rehabilitation. I have experience in hospital, inpatient rehabilitation, home healthcare and school settings. I have always found my work as an OT very rewarding, and am very passionate about working with individuals with neurological disorders and sensory needs. My greatest loves… my hubbie, Mike, and my 2 children are at the center of my world. There was a lot we experienced emotionally as a family during and following my son’s hospitalization that changed my perspective as a mom. I don’t worry as much about small decisions and details, don’t take as much for granted, and really value the importance of finding moments of “calm” in our hectic day-to-day routines. Their love, support, and boundless energy are driving forces behind Child Inspired.

What do you want parents and medical staff to know about children in hospitals? I think many already know, but I think ALL medical professionals need to know that (many, if not most) children and families are not processing auditory information effectively during stressful medical events. Children and families want (and need) medical teams to disclose accurate and honest medical information, but it needs to be delivered with a compassionate, child-centered approach. Don’t be scared of informing children and parents of setbacks or regressions in progress. They know setbacks occur. They just need consistent, jargon-free language that helps them understand what is happening and supports them through the disappointment. Families and medical professionals also need to know that emotional healing will often take much longer than physical healing, and need to be educated on resources that the family can access if emotional or behavioral concerns arise after discharge.

 

What are your hopes for your company? My hope for Child Inspired is that our Get Well Maps will become a model for child-centered discharge planning, and that our tools will also help children and families visualize their progress as they re-integrate back into school and community activities after medical events. In this fast-paced, digital age where much of what our children encounter is instant gratification, many children need support and encouragement as they work towards goals that require time and perseverance. It is my hope that our Maps facilitate positive, encouraging language and communication between children and the adults providing their care.

 

Do you have any tips for how parents and child life specialists might use these maps? I love your profession and the amazing work that you do with children, siblings and families, as well as the work you do to model and advocate for child-centered care among your other medical colleagues. I think that Child Life Specialists can play a pivotal role in daily medical rounding and discharge planning, and that Get Well Maps provide a method for facilitating child-centered communication and visually tracking medical progress. A Get Well Map is fun, and individualized to the child’s interests and goal, therefore, it reduces anxiety by helping you relay and reinforce information discussed in medical rounding (often laden with medical jargon) in a way that is developmentally appropriate and child-centered. Contact us to learn more about how a CCLS is using Get Well Maps with children after bone marrow transplants, and how her unit now has a physician order and pathway to initiate Child Life assessment and intervention (including Get Well Maps) from diagnosis to discharge.
Anything else you want us to know? Thank you for all that you do! As always, I would love to collaborate with you and your teams to develop solutions for your patient populations and healthcare organizations.

IMG_4803

IMG_4802

IMG_4804

Defrosting

IMG_4722

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

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

IMG_4686

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

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

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

But I have learned a lot over the years.

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

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

 

 

Kindness as a De-stressor for the Holiday Season

 

Whether or not you are a Christian, the month of December descends upon many of us all with an overload of stress: pressing consumerism, forced merriness, and social and family expectations that can make us feel less than and despairing in so many ways. We can lose sight of the sense of hope that the season is meant to embody, the acceptance of darkness before the dawn, the preparing and waiting for the light, the igniting of that light within ourselves and others, all in the maelstrom of media messages.

Well, today, I am thankful for this calendar that I found on social media, and I want to share it with all of you, I see it as a template. It might be a wonderful activity for you to do alone, with children, or with family members. If you make your own kindness calendar, you can add to it acts of kindness that hold specific meaning for you and are within your reach to accomplish. You can place a piece of oaktag or cardboard over it and cut out little doors and windows to open each day.

Just contemplating this activity makes me think of kindnesses I have witnessed in the recent and not so recent past.

A fellow teacher had a particularly bad day when a troubled student lost control, trashed the classroom and scratched the teacher’s face. My assistant teacher, Elizabeth, entered her colleague’s classroom during her lunch break to find her fellow teacher crying. Elizabeth quietly went about the room, righting chairs, picking up toys, and straightening up the chaos. Then she went to the nearby market and brought back some chocolate. These gestures spoke so much louder than words of consolation might have.

At a family gathering in the basement of a local Baptist church, where parents and children worked on arts and crafts, a family struggled with finding positive ways to respond to their preschooler. I watched as each parental admonition ratcheted up the child’s resistance and anger. For a few moments, my friend, Edna, joined the child in play, and gave him some gentle, corralling, positive feedback, helping him to self regulate and giving the parents a break.

On the city bus, a loud and hostile argument broke out between two passengers, fueled by both, but with one person definitely being more aggressive. As his voice grew louder and louder, an elderly lady finally stood up, and approached the yeller. “You need to stop,” she said. “It’s not okay to use that kind of language.” Once she spoke up, others did as well, and the situation calmed down.

A nurse responds to my tears of fear facing chemotherapy by putting down her medical implements, drawing her chair up to mine, taking my hands in hers and telling me that God will help me bear whatever I must face.

A yoga teacher guided our class in breathing with intention and awareness yesterday. He said that when we breathe for ourselves, we are breathing for all of our loved ones, and for all humanity. When we feel so overwhelmed that even breathing feels like a colossal task, it does help to know that it is enough, and that breathing can be more than a self sustaining act. Breathing can sustain others. So whether your acts of kindnesses are as simple as breathing, or a single word, a glance, a gesture, it is all within your grasp to ignite the light of loving kindness in yourself and others, one act and one day at a time.

 

 

Velvet Revolution Remembered

6CF789FC-BE2A-4855-A0CD-AE86C0AC19F8.jpeg

November 17, 2017 marked the 28th anniversary of the Velvet Revolution, when  Czech citizens rose up against communism and succeeded in toppling the regime, foretelling the coming dissolution of the USSR. This date is no coincidence, as it echoes a previous moment in history, when the Nazis responded to students’ protests by closing all Czech universities, killing 9 students and imprisoning 1200 in concentration camps.

On the national holiday, the Kralovecs and I joined the throngs at Wenceslas Square in Prague to remember and celebrate the arrival of freedom and democracy  to their country. A large stage with a giant screen broadcast live music and political speeches. When we first arrived, yards away a news crew interviewed one candidate for the presidency, surrounding him with bright camera lights and microphones.

83A8DB5B-081B-40B4-B1B9-469A209260A1

Booths lined the street, some displaying candles in red glass jars, and ribbons in Czech red white and blue, others offering political information. One encouraged passers by to sign a petition calling a stop to the hunger strike of a man protesting the current president running again for office. People feel that his life is more important than the foolishness of the current president.

F819E7C9-056D-45BA-8938-13BC15476736

The self sacrifice is reminiscent of a student’s martyrdom in 1969.  Jan Palach set himself on fire at Wenceslas Square after the Soviet Union invaded his native Czechoslovakia to crush the reforms of Alexander Dubcek’s government.  The actions of people who sacrifice themselves in order to awaken awareness and resistance against oppression are as disturbing as they are inspiring. Why should this have to happen in order for people to wake up and resist?

64709973-B00D-4E75-9822-CA89C66ED449.jpeg

We headed to Narodni Trida, the place where the protestors and police clashed on the fateful day. Entering a building where an exhibit of enlarged photos of the revolution hung in the lobby, I noticed a father explaining one photo to his small son.

2A84614F-E119-4A82-9F5A-B1AA2793FEF0

5EF13AAE-42E3-4EDB-9E88-50449D860A44

 

The photos told the story of the revolutionaries, who were students for the most part. They carried signs calling for freedom. One showed students with raised and open hands. A banner read “Our hands are empty!” indicating their lack of weapons. Apparently the wording for “We have sticks in our hands” is very similar to their statement, and the authorities later lied in the press, reporting that the students were inciting violence. In fact, it was a peaceful demonstration and many students handed or threw flowers to the police in riot gear, who responded with violence.

B9393059-9163-443A-BE96-7E558119C05D

Outside the building a sea of glowing red candles and flowers surrounded the edifice. Citizens young and old  approached the flickering monument to add their own candle or flowers. Small children crouched at the edges, observing the firelight while they braved the cold night.

 

3E2A1B68-3E20-4518-8930-D7B4A9898B9B

 

A marching band made its way up the middle of the street along the trolley tracks and stopped beneath a balcony to accompany a singer whose voice silenced the crowd. She sang a rendition of a song performed from the same balcony during the protest, and I could see that many people were moved to tears by her words. Even though I don’t speak Czech, I too felt a stirring and energy that seemed synergistic with the crowd’s mood.

I  had many questions for Jiri  and Marketa about what they recall from that day in 1989. They explained that their role was a small one, handing out pamphlets and showing up for the protests. The people of Prague were mostly open to the ideas of change and democracy, but the citizens in rural areas were more closed to the revolutionary ideas and less willing to risk protesting Communism. Well known actors took up the cause to travel in groups from village to village to impart the message of freedom and facilitate change. It makes me think of what evil can do in the face of no action at all, and it was the many risks that people took, large and small, that brought about tremendous change.

23E2F9D0-0397-40BC-A920-C68EB467CA23

We drove home watching the television broadcast of the Memory of the Nation Awards broadcast from an elegant theater on the Square and streamed on Jiri’s smartphone. A dear friend of the Kralovecs, Father Frantisek Lizna, was one of three recipients. The nation celebrated the Jesuit priest for his service to the country in taking a stance against Communism that landed him in jail, and for a life of service to those in need. I had met him on one of my previous visits, and I recall his kind, open and playful nature. Indeed,  jokes and banter peppered his acceptance speech, and he exuded humor and lightness even in this formal environment.

E59BE00E-B894-45D2-9788-94605CE879AE

Funny enough, we found out later that we all appeared on the national Czech news prime time that night, as the news cameras caught us unaware in the crowd. I felt extraordinarily blessed to stand witness to the history of this place and to share in the personal memories of my revolutionary friends. As we headed home through the dark and foggy roads to the village of Malejovice, I thought about how the students proclaimed that in unity there is strength, despite the authorities’ attempts to separate the workers from the educated classes in order to tamp down knowledge and resistance. I think of our own country and how coming together may be the only way to survive and thrive as a true democracy.

9C60D0A5-89E5-4395-AB6C-70B4D13DE979.jpeg

FE4B1035-DBB4-44EA-ACB2-BB0E7420DEA9

Whose Woods These Are

AD36954E-D81B-4CEB-A4C4-934F848C3E73

I awoke to my first snow of the season dusting the rooftops, fence posts and trees of Malejovice. The woods called to me and so I donned hiking boots and set out over the fields to the forest. The snow sifted quietly, the mud of the unpaved road sucked at my feet and the utter silence filled my heart.

FC3F2BB3-FA5A-4191-952B-7752F9A2ED19

7E8404E9-B8CD-4944-A3B5-4FDDD8E5E7AB.jpeg

Arriving in the forest felt like entering the haunts of Hansel and Gretel.  I stepped past the trickling brook and into the peace of the sheltering pine trees. The pine needles cushioned my steps and the trilling of birds and patter of melting snow the only sounds. I passed a fallen tree, it’s root system an earthy sculpture.  Pine cones and balsam branches decorated the forest floor.  Mossy tree stumps stirred memories of nature walks with my dad when I was very young. He used to point them out to me and tell me that they were fairy castles.

DC3241B1-C669-4A32-962C-E6ACE2F5EE6B

2CA472CA-9393-4E30-B70B-1AF13100B61C

87D267D5-28DD-4379-929E-396B075FA3B0

I stood still and closed my eyes and listened. The first poem that I learned and memorized at age seven welled up from within.
“Whose Woods these are
I think I know.
His house is in the village though.
He will not mind me stopping here
To watch his woods fill up with snow.
My little horse must think it queer
To stop without a farmhouse near.
He gives his harness bells a shake
To ask if there is some mistake.
The only other sounds the sweep
Of easy wind and downy flake.
The woods are lovely dark and deep.
But I have promised to keep
And mikes to go before I sleep
And miles to go before I sleep.”
Robert Frost

Indeed I knew that friends and breakfast awaited. I reluctantly left the silence of the woods and headed back to the warmth of Malejovice over fields glistening in the melting snow.

55E5ABF0-2469-4555-89CF-4E2FD38556D0

Over the River And through the Woods to the Czech Republic I Go

579E8A0D-E8CC-4D5E-9481-2BD8BB1C6631

I greatly anticipated my fourth visit to collaborate with the Klicek Foundation in the Czech Republic. The cold weather brings to mind the song from my childhood of traveling via horse and sleigh through the woods to grandmother’s house. For me, it meant taking a new route flying to Prague via a stop over in Zurich, which provided me with my first glimpse ever of the majestic Swiss Alps. I had no idea they covered such an expanse.

CDF40A0D-488F-4108-8E01-D14B2DF58BFD

Our adventures began immediately, as Jiri and Marketa Kralovec included me in some important errands along the way from Prague to their home in the small village of Malejovice.  The Klicek Foundation has secured a plot of land close to the Motol Hospital, on which they will build a new hostel for parents of sick children visiting Prague for specialized medical care. Our assignment for the day was to measure the distance between several trees and a wall, so that an engineer could design the parking lot to meet the requirements of the environmental council.

FFC80548-4A0B-4039-8B44-303EBADBC8A5

And so, armed with measuring tape and a clipboard, we gathered the necessary measurements. We then wound through the city, making stops at two publishing companies and an electronics store, where we gained sustenance in a lovely cafe to tide us over before the hour long trip home to the village.

Molly the dog and the many cats greeted us, and there was hot homemade soup waiting on the stove and a crackling fire in the green ceramic fireplace. Having missed a night’s sleep on the plane, I was happy to fall into bed in the dark country night, and I slept deeply without remembering my dreams until rising early for a full day’s work the next morning.

The first scheduled event was a gathering of three schools that are housed in one building in Prague. There are two secondary schools, one for nursing and one for social work, and a college of nursing. The students came together in a chapel at the school of nursing Jana Paula 11, and we presented a workshop on the value of play and the psychosocial needs of children in hospitals. The room was jam packed with young people, and the more interactive we got, the more engaged they became.

575A7739-1AE8-4F8E-9855-EF702C3AB20DC4F5A927-08A1-4171-93FA-0DE401A317DD1538D3CA-1211-4828-A325-536E85E5D194

Following this seminar, I accompanied Jiri and Marketa to a city council meeting where they advocated for permission to build upon the plot. There are many steps to take before they can announce the council’s approval and begin fundraising for their project. A well known actor, David Vavra,  who also happens to be an architect, is designing the building.

Following a challenging meeting, we headed over to the famous Old Town Square, to the medieval building that houses the Skautsky Institute. There we hosted a gathering of hospital play specialists that also included the medical director of a hospital on the northern border, a book publisher, and a British law student studying abroad at the Charles University. We discussed the challenges facing the profession, many of which involved issues of racism regarding the care of Roma families. The thorough marginalization of the Roma leads to trust issues between the families and the staff. The play specialists often feel overwhelmed by the intersectionality of the many societal factors that impact the lives of Roma families.  They feel helpless in the face of such poverty and hopelessness.

The law student, of Roma heritage, adopted by a British family, is researching the educational inequities and racism that Roma children face in Europe. He hopes to champion their cause as he progresses in his profession. He had connected with me after reading my blog about the children of Chanov — such a small world after all

BBFFA6B8-DD9C-46A8-A858-148E3C8569CD8523667D-1E56-4E59-926F-77B0F6237816

Spotlight: Child Life Intern in Community-Based Practice

IMG_6892

This week, I will spotlight a Canadian career changer as a guest blogger.  Kim Zink is  currently completing her child life internship in a community-based practice with mentor, Morgan Livingstone, a CCLS based out of Toronto, Ontario. Kim left her position in the school board to focus and refine her scope of practice to assisting children and families facing challenging life events.   She sensed the need for more psychosocial supports and greater visibility of child life services in the Ottawa region. So, with the support of her husband, two children, and extended family, she is chasing her dream!

 

This internship has been the perfect fit for me.  My mentor has been working in her own practice for many years, so she has a broad network of community resources and wealth of knowledge in many areas including global health, retinoblastoma, and traumatic brain injuries. She also wrote an incredible parent guide for families affected by breast cancer (including metastatic disease).

 

My internship has been full and rich. My first rotation took place at the Shoe4Africa Children’s Hospital and the Sally Test Pediatric Centre in Eldoret, Kenya. Morgan has been developing a self-sustained child life program there for many years. It was invaluable to see the robust program which now includes a number of child life specialists, teachers, playroom monitors and child life assistants. The team endearingly refer to Morgan as  ‘ our mwalimu,’ which means teacher in Swahili. Morgan served as an example of how to be patient-centered and culturally sensitive in global healthcare, no easy task.

IMG_6886

While we were there, I was invited to sit in on an oncology meeting. It was deeply moving and inspiring to hear the doctors speak so highly of the child life staff to the families. The doctors spoke of being a team and that families should refer to child life with any questions about their child’s developmental, social and emotional needs. The child life team has built an advanced practice and a great interdisciplinary approach. Unfortunately, in some areas, the pain medications and ideal supplies are not available, so I had the opportunity to offer distractions through games on a tablet and meteor storm toy to bring the child’s  attention away from the burned areas and bandage changes during procedures. It was a proud moment for me when the doctor told me that the best bandage change a particular boy had ever had and that I was welcome back anytime.

IMG_6890

The hospital sees over 300 children every day, and sadly many of the children are not brought to the hospital until their illness has progressed to the palliative state. So we turned our focus to legacy building and adding quality to end of life.  One simple and inexpensive legacy activity that worked well was making a salt dough handprint for each family.

IMG_6889

During my second rotation, I relocated to Toronto to intern in Morgan’s local private practice. She sees a number of teen patients, which was a demographic I knew I needed more experience with. I discovered it’s key to listen carefully to their interests and then go home and study up on these interests to gain common ground for future conversation and show teens that you listen and care about what they have to say. So now I  know  more about the ins and outs of  making slime and the youtube channel, Simply Nailogical, than I ever thought possible. This research paved the way to building rapport and trust with one teen in particular. Showing interest in her interests was a great connector.

tenor

 

My future work in child life has also be enhanced by working with my mentor on traumatic brain injury cases. I had the opportunity to see treatment plans, do home visits, sit in on team meetings, and understand the billing process through insurance providers. During a recent conference call, a teen’s mother said, “Things started to finally turn around when Morgan was added to the rehab team and started her sessions. She [the teen] found the tools and started to cope, she really improved with Morgan’s help.”

My latest adventure in my internship included a trip to Washington, DC for the One Retinoblastoma World Conference. I had the privilege of assisting Morgan with the child life programming, which included transformative literacy, medical play, and lots of activities with special eyes. It was great to see one child move from fear to familiarization with the sedation mask. Another child displayed new skills of mastery by using the medical doll to practice cleaning and adjusting an ocular prosthesis. Still another young child spoke openly about having a special eye, as he called it, for the first time. One of the teens overheard and said: “Me too, and I like to take mine out with a suction cup.” There is nothing like these spontaneous conversations to bring about that reassurance of ‘sameness” and soothe constant feelings of being different from everyone else.

IMG_6891

Above all, I will finish my internship with ample understanding of what it means to be an advocate for children. Morgan is a tireless champion for her patients, working to be sure they have everything, from a great relationship with their general physician to the correct supports from their school. She moves mountains to make sure the children and teens in her care have everything they need to be happy, healthy children. We need more child life specialists doing this work in the broader community.

IMG_6888

PS: Navigating independent and Canadian internship possibilities has its challenges. I highly recommend the Facebook group for ‘Child Life for Canadian Students’ and http://www.cacll.org/

Continue reading

How to talk to kids about the Las Vegas mass shooting

 

I have no words, so today I reach to Katie Kindelan for hers. The following is reprinted from ABC News  website

By KATIE KINDELAN

Oct 2, 2017, 2:09 PM ET

 

When Vickie Nieto digested the news this morning that at least 58 people died in a mass shooting in Las Vegas, the first thing she thought about was what she would tell her two daughters, ages 10 and 14.

“My 10 year-old heard about it on the TV before school,” Nieto, of Land O’ Lakes, Florida, told ABC News. “I didn’t want to tell her about it because I didn’t want to scare her.”

Nieto said her fifth grade daughter is “already scared about school shootings because they have to practice for them at school.”

But this morning, many people like Nieto woke up to the news of a mass shooting at the Route 91 Harvest Music Festival in Las Vegas, where a gunman opened fire on a music festival crowd, starting just after 10 p.m. local time Sunday. At least 58 people were killed and 515 were injured.

In the wake of the shooting, the Las Vegas Police Department said authorities responded to a hotel room on the 32nd floor of the Mandalay Bay hotel, where police said the suspected gunman, 64-year-old Stephen Paddock, was dead. Police said they believe Paddock, of Mesquite, Nevada, killed himself prior to police entry.

Many parents and caregivers were faced with conversations about the mass shooting even before children left for school.

‘Parents should let their kids know that, ‘I’m here to answer any questions you may have, any worries you have we can discuss,”

For others, the conversation about the tragedy could begin when kids return from school, after they may have heard about the shooting from classmates or teachers.

“It’s important for parents to start the conversation,” said Robin Gurwitch, a psychologist at Duke University in Durham, North Carolina. “As much as we would like to wrap our arms around our children and try to keep anything bad from getting through, it’s unrealistic that we have that ability.”

Gurwitch, also a member of the National Child Traumatic Stress Network, said that the conversation parents have with children should be age-appropriate.

For children old enough to understand what happened, parents should focus on letting them know that they are not in specific danger.

“Help them understand that there was a shooting in Las Vegas and many families were out listening to music when somebody, for unknown reasons, started shooting people,” Gurwitch said. “And tell them that because the police responded so quickly [the suspected gunman] is no longer a threat.”

Dr. Lee Beers, a pediatrician at Children’s National Health System in Washington, D.C., said a tragedy does not have to be a trauma for children if it is “buffered by good, strong and caring relationships, by the adults around the child.”

She also recommends different responses for different ages, and individualizing the approach for each child.

Preschool age: This is a time when parents have a high level of control over what their children see and hear so it does not need to be brought up unless a child hears about it first. In that case, Beers recommends making sure the child knows you are there to answer any questions.

Elementary school age: This is an age when parents should preemptively help their child know about the tragedy and share basic details and leave the door open for them to ask questions, according to Beers.

Middle and high school age: Beers advises having a more detailed conversation with children. Start by asking questions like, “Have you heard about this?” and “What do you think about this?” to find out what they know and what may be bothering them.

In the Las Vegas shooting, videos taken by onlookers and shared on social media gave a glimpse of the chaos during and after the shooting.

“So hard to raise a child in this country these days,” posted one mom on Facebook. “There doesn’t appear to be anywhere that’s safe.”

Gurwitch said the visual aspect of the shooting should give parents even more of a reason to speak with their children openly and candidly, according to their ages.

“Parents should let their kids know that, ‘I’m here to answer any questions you may have, any worries you have we can discuss,’” she said. “Check in at the end of the day to see what their friends were talking about at school and what they saw on social media so they have an idea of where they’re starting from and how to continue the conversation.”

Seeing frightening images repeatedly can be traumatic for children, so talking about the images and limiting exposure to them can be important.

“Repeated exposure to viewings really does increase the stress and trauma in your emotions, in the way that you respond to it,” Beers said. “It’s very tempting to watch the coverage 24-7 so I think really self-limiting that is really important because that repeated exposure escalates the emotions and escalates the feelings.”

Nieto said she recognizes how upsetting the images on TV and social media can be.

“It’s terrifying for me and I’m an adult,” she said. “It’s very terrifying for kids to see it.”

“Acknowledge that there may be a little bit of extra help that is needed …

Nieto said she “always has conversations” with her daughters about tragedies like today’s, but is struggling for what to say in the wake of yet another shooting.

“This is very upsetting for them to have to hear about this again, because it happens all the time now,” she said.

Older children in particular may have concerns because the Las Vegas concert shooting happened so soon after the May 22 bombing at an Ariana Grande concert in Manchester, England, killed 22 and left more than 100 injured.

“Parents who are up front with their kids about these kinds of things, their kids tend to do better than parents who try to hide these things,” she said. “Talk about safety issues and what we do to keep our families safe, what we do to keep each other safe and what communities do to keep us safe.”

Both Gurwitch and Beers advised parents find ways they and their children can help those affected by the shooting, like first responders.

“Little children can draw pictures and older children or teens can write letters,” Gurwitch said. “Sending these to Las Vegas Police, EMS, Fire and/or local responders to thank them for what they do every day can help children feel that they have taken a positive action and the boost to responders is priceless.”

Nieto described one reaction she had to the shooting as being scared to “go anywhere” out in public.

“It terrifies me to even go to the store, especially with my children,” she said. “Because you never know who has a gun these days.”

Gurwitch shared language parents like Nieto can use to reassure both themselves and their children that it is safe to continue life as normal, while being alert to safety issues.

She recommends parents say something like: “I also know that there are a lot of people that this is their job to keep us safe, so I’m going to continue to do the things that we like.”

If parents and caregivers notice children are overly worried or having trouble focusing at school or at home, Gurwitch said to not delay in reaching out for help, and to have patience.

“Acknowledge that there may be a little bit of extra help that is needed with homework, care and attention around bedtime, and that’s true for younger children as well as teenagers,” she said. “If you don’t know what to do or what to say, there are people you can turn to ask what you can do for your child.”

Gurwitch and Beers recommend as resources for parents, the American Psychological Association, the American Academy of Pediatrics, school counselors, family physicians and local mental health counselors.

%d bloggers like this: