Meet Walter. He has been volunteering with enCourage Kids for over 10 years and was recently awarded the enCourage Kids Volunteer of the Year for 2020. His dedication and passion for our mission are unparalleled and we are grateful to have him as a part of our community. Outside of donating his time, Walter also provides generous financial and in-kind contributions through his company, My Paint By Numbers.

We asked Walter about his experience volunteering with enCourage Kids and what makes him so dedicated to our work. He says, “I’m passionate about the mission because of how happy the kids and families are with enCourage Kids’ programs. I can only imagine how difficult it is for families at home. I showed up to the weekend away at camp with a bag that can fit as an overhead carry-on. Many of these families had car trunks full of just medical devices they needed to make it through the weekend. It is just wonderful to be able to give the kids and their families respite from the challenges they face. The joy it brings them is palpable and contagious.”

Volunteers like Walter are a huge part of how we carry out our mission. They are an integral part of our organization and we are thankful for their dedication to making hospitals a better place to get better for pediatric patients across the country. If you are interested in learning more about how you can support enCourage Kids, please email Briana Horwich at briana@encourage-kids.org.

What is music therapy? Me oh my! If you are thinking about a career as a music therapist, get ready to have a quick answer to that question –it will be asked frequently! I am excited the enCourage Kids Foundation (EKF) has given me the chance to answer that question in this post, as well as the opportunity to describe the role of music therapy in pediatric hospitals and a bit about my own career as a music therapist and researcher. Thanks, EKF! And who am I? My name is Jessica Jarvis, I have been a music therapist for roughly 10 years, and I am currently a postdoctoral scholar at the University of Pittsburgh completing a research fellowship to develop advanced skills in pediatric critical care research.

So, what is music therapy? The American Music Therapy Association (AMTA) defines it as “the clinical and evidence-based use of music interventions to accomplish individualized goals within a therapeutic relationship by a credentialed professional who has completed an approved music therapy program.” My elevator speech definition is typically something along the lines of “Music therapists address physical, emotional, cognitive, communicative, or social goals through the use of music. ‘Using music’ can mean listening to, moving to, singing, or creating music.” Keep in mind that music therapists work with individuals across the age span and work in many settings, including, but not limited to, schools, medical and psychiatric hospitals, nursing homes, and correctional facilities. I worked in a pediatric hospital and thus this is the lens through which I often describe music therapy services.

As you can imagine with such a broad definition, music therapy can be utilized in a variety of ways in the medical field. In a given day at a pediatric hospital, a music therapist may work with a child on improving their attention and working memory through playing the drums, processing trauma through songwriting, providing alternate engagement through singing and instrument play with a child to decrease their pain perception during a burn dressing, increasing arousal and purposeful responses through music-based stimuli for children with altered mental status after brain injury, or supporting families during the end of their child’s life through legacy building. Sometimes we work individually with the child, sometimes we hold group sessions. We might co-treat with other creative arts therapists, child life specialists, rehabilitation therapists, or behavioral health therapists. It all comes down to what the child and their family’s priority needs are and how we can best support them in achieving those goals.

The ability to safely and effectively use music and music-based interventions to address an individual’s goals requires training. To become a board certified music therapist (MT-BC), you will need a degree in music therapy from an AMTA approved program, 1200 hours of supervised clinical training, and to pass a national certification exam administered by the Certification Board for Music Therapists. Note: Some states may require licensure, make sure to search the laws for your state.

Some of those clinical training hours are embedded in your degree program as fieldwork or practicum opportunities and the rest are completed during your music therapy internship. I was fortunate to be selected for a wonderful internship at Children’s Memorial Hermann Hospital with Christine Neugebauer. Amongst other things, Christine instilled in me a love of research and taught me how to how to find and understand the latest research in order to inform my clinical practice. Sometimes this was from music therapy-specific research, but, given how relatively young music therapy is, sometimes it meant applying findings from other related fields (such as neuroscience or psychology). I was lucky to be offered a position at Children’s after I completed my internship and I worked there for 5 wonderful years. Working as a music therapist in a level 1 pediatric trauma hospital is certainly challenging, but very rewarding. Similar to many music therapy programs in pediatric hospitals, our music therapy team provided services throughout the hospital. Over the years, I developed a particular passion for working with critically ill children and their families in the pediatric intensive care unit (PICU), which ultimately led me to my career as a researcher.

Being grounded in evidence-based practice, I wanted to make sure I was providing optimal care for this vulnerable population. However, I struggled to find published research on the use of music therapy in the PICU. I searched for published research on the efficacy of other rehabilitation therapies in the PICU, but to no avail. Finally, I sought for research on outcomes for children and families who survive a PICU admission, but there were few results. This lack of evidence-based rehabilitation approaches for critically ill children and limited knowledge about post-PICU outcomes inspired me to obtain a Ph.D. in rehabilitation sciences and to complete two postdoctoral research fellowships, one in pediatric rehabilitation and one in pediatric critical care. My program of research focuses on understanding what functional recovery looks like for children and their families after leaving the PICU and testing music-based interventions to help promote that recovery.

This is just one person’s experience within a very broad field. I’d like to encourage interested readers to explore what other career paths in music therapy may look like. Check out AMTA’s website, find resources and engage in webinars through the Sound Health Network (a Kennedy Center, NIH, and National Arts Endowment collaboration exploring music’s impact on the brain, health, and wellness), follow music therapists on Twitter (I’m on there too: @jarvismtbc), attend a conference, listen to a podcast (I enjoy ‘Instru(mental)’ by Bea Murakami) – there is no shortage of ways to learn!

And on that note (pun absolutely intended), I thank EKF again for this opportunity to share and I thank  ✨you✨ for reading!

Jessica M. Jarvis, Ph.D., MT-BC

Department of Physical Medicine & Rehabilitation

University of Pittsburgh

Happy Child Life month!  My name is Jennifer Johnson and this year marks the 30th anniversary of my career in the child life field. When I reflect back on the past 30 years and all that I have accomplished, my proudest achievement has been my work with a dog by my side.  Back in 2003, our child life program started a facility dog program and welcomed Hazel, a sweet two-year-old Labrador/Golden Retriever from Canine Companions for Independence.

My entire career has been at Sutter Medical Center, Sacramento. For the past 24 years, I have worked exclusively with the pediatric oncology population.  Most would say they could never survive in this position for as long as I have.

But, I firmly believe it is because of the endless joy and rewarding outcomes that my work with my current facility dog, Glimmer brings.  Glimmer is a very important tool in my work with patients and families. Because of her skill set, I am able to utilize her in my daily interventions that would otherwise not be possible with an untrained dog. Glimmer’s sweet demeanor and softest fur make even the most difficult situations a bit better.

My journey with my first facility dog, Millie began back in 2004.  This means I have worked over half of my career with a facility dog by my side!  Both Hazel and Millie really paved the way and pioneered so much of what we now are seeing across the country with facility dog programs. Through all of the changes in healthcare, the one thing that has remained constant is the incredible support our child life and facility dog programs have received from our hospital.  We have grown our program within the Sutter Health hospital system to 14 dogs, all working in various settings within Northern California. There are currently six dogs on our campus, matched up with Child Life Specialists. What I love most about having Glimmer by my side are the unexpected nuggets that come from each day. Dogs have a way of bringing people together in both joy and sorrow.

So many people have asked me through the years, “How is a facility dog different from a therapy dog?” Here are a few of the main differences, but this list is just the beginning.

Pet therapy dogs are typically volunteers that have permission to visit a public facility. They are required to pass a “canine good citizen” test or obedience test through AKC. They are usually registered by a therapy dog program and ongoing follow-up is not required.

Facility dogs are expertly trained and matched with professional, certified handlers. The dogs are trained for approximately two years and work a minimum of 20 hours a week.  They engage in interventions or tasks that benefit the patient or client with the direction of their handler. The handler and facility dog pass a standardized public safety exam through Assistance Dogs International (ADI) and have ongoing certifications.

If you are considering adding a facility dog to your program, I would advise you to lean in and ask the experts, do your homework on the various organizations that train and provide facility dogs, but most of all run, don’t walk. You won’t regret it!

Canine Companions for Independence is a non-profit organization that enhances the lives of people with disabilities by providing highly trained assistance dogs at no charge to the recipient. Canine Companions is the largest provider of assistance dogs in the world. They train service dogs for adults, children, and veterans, and facility dogs who work with professionals in a visitation, education, or healthcare setting.

For more information on Canine Companions, please visit www.caninecompanions.org

When asked to write this I immediately had feelings of joy, excitement, and delight. My name is Keeley Machen Schares and I just summed up on what child life is in the above three words. My child life journey started during my undergraduate studies at Louisiana Tech University. At the time, I had no clue that I had chosen to enroll in a university that had a child life program, but thankfully after hopping around from major to major I found my passion within the child life classes. Mrs. Anita Pumphrey, Certified Child Life Specialist, was the academic child life coordinator at the time and she inspired me to chase my dreams of being a Certified Child Life Specialist.  Upon graduation from Louisiana Tech University, I decided to attend graduate school at Texas State University to earn a master’s degree in human development and family science with a concentration in child life. While completing my graduate studies, I gained lifelong friends that now work around the world as Certified Child Life Specialists.

Fast forward to my clinical work, I was hired after the completion of my child life internship at Children’s Health in Dallas, Texas. Talk about a dream! I worked within the emergency department for two years and then transitioned to the gastrointestinal unit. During my time at Children’s, I learned how important the role of a Certified Child Life Specialist is. We are the ones who can be a glimpse of light to families in their darkest days. No day is the same for a child life specialist. I would sit with families while they waited for their child to receive a liver transplant, I educated parents on how to play with their infant who will go home with a nasogastric tube, and on the same day I would also celebrate a patient’s fifth birthday, organize a family lunch to promote normalization, or engage a patient in a scavenger hunt to encourage ambulating.  My work inside the hospital walls is irreplaceable, the families I supported taught me what resilience looks like, and the friends I gained will last forever.  My love for child life, that joy, excitement, and delight I feel is now seen inside classrooms. I have recently transitioned to the child life instructor at Louisiana Tech University. As a child life specialist, you never stop advocating. You advocate for families, for funding, for the medical staff, and for yourself. I love that now I get to advocate for the importance of child life and for students. My passion is child life, full circle of pure joy, excitement, and delight.

March is Child Life Month, a month dedicated to celebrating child life specialists and the child life profession through education and awareness of their incredible work.

Certified Child Life Specialist: noun

A person who is educated and clinically trained in the developmental impact of illness and injury. Their role helps improve patient and family care, satisfaction, and overall experience.¹

Learning that your child requires hospitalization or extended medical care is every parent’s worst nightmare. The hospital experience comes with so many questions, fears, and anxieties, and that is just for the parents. A child experiences all of that, plus the needles, tests, and procedures. Child life specialists are there to meet the unique emotional and developmental needs of pediatric patients and their families, no matter their age, gender, race, socioeconomic status, or medical needs. enCourage Kids is honored and proud to work alongside child life specialists across the country.

You may wonder what exactly a child life specialist does to support children and their families during a hospital stay or new diagnosis. While every child and every situation is different, child life specialists:

• Use therapeutic, developmentally-appropriate play interventions that allow children to cope, healing, mastery, and self expression²
• Prepare patients and their families for medical interventions and difficult medical concepts using age-appropriate language they understand
• Help children and their families cope with certain procedures through distraction or engagement
• Advocate for both their patient and their family
• Help ensure the child is on track developmentally during their hospital stay
• Support the patient and family through end-of-life care

For the 3 million children hospitalized every year in the United States, child life specialists understand the unique challenges that accompany a hospital visit. Together, with enCourage Kids’ support and funding, we are making hospitals a better place to get better.

Join us this month as we celebrate and share the stories of how child life specialists make a difference through our amazing guest bloggers. You won’t want to miss it!

1. https://www.childlife.org/the-child-life-profession
2. https://www.childlife.org/the-child-life-profession/values

When a child comes through the doors of a hospital, enCourage Kids strives to ensure their mental, physical, and emotional needs are met. We have filled the gaps in hospitals nationwide so they can care for their patients, no matter where they were born, the color of their skin, the language they speak, or the ZIP code they live in.

Our goal is to continue deepening our relationships with hospitals nationwide to make sure each and every child in their care receive access to high-quality programs focused on improving their psychosocial well-being. Regardless of the city, state, or ZIP code where a child lives, our hospital partners are working towards providing a more equitable healthcare system for all.

Each summer, our kids and families look forward to our weekend away at Camp Pontiac. This year, due to the COVID-19 pandemic, enCourage Kid hosted our annual camp weekend virtually. Our families' safety and providing them with joy and laughter is our top priority. Since they couldn't take the trip to upstate NY, we decided to bring camp to them! 

Our children coping with chronic and serious illness are more vulnerable to infection and have had to be extra careful during the pandemic. Being able to do very little beyond their homes, they have come to feel incredibly isolated, worried, bored, and anxious. But while enjoying virtual camp activities, our kids were able to step out of their everyday challenges and experience a break from their stress and heightened isolation. They felt a sense of normalcy and had fun playing and bonding with their friends.  

41 enCourage Kids families received Camp in Boxes filled with crafts materials, games, crafts, and s'mores kits to get them ready for hours of fun! As our kids participated in a ton of engaging activities across the last weekends of August, the weight of fear and loneliness turned into laughter, smiles, and fun. There were over 30 hours of live content provided, and they enjoyed Restorative Yoga; Family Trivia, Mindfulness and Meditation, a Magic Show, a Donuteers Entrepreneur Workshop, an Ice Cream Party, a Live Concert from Zaxai of season 24 of The Voice, and Sing and S'mores by the Campfire! Our kids, their siblings, and parents also enjoy tons of crafts sessions such as Birdhouse Making, Photo Frame Decorating, Robot Making, Paint by Numbers, a Graphic Art Tutorial, Tie-Dye T-shirts, Friendship Bracelet Making, Camp Hat Decorating, and Slime Making. For parents, we held happy hours, coffee hours, and support groups to connect with others who understand their experiences with children with medical challenges. 

A special thank you to The Donut Pub, Zaxai & The Band Date Night, LOG-ON, and Amazing Savings who helped to make Virtual Camp EKF possible. We'd like to also extend our deepest appreciation for our volunteers, Angelae, Casey, Catherine, Eleanor, Jody, Katie, Melanie, Mike, Nicolette, Shanti, Shreya, Travis, Walter, and Zoey. 

Watch the recap of Virtual Camp EKF! 

Meghan Kelly, the Director of the Phoebe H. Stein Child Life Program at Children’s Hospital at Montefiore explained, “during the COVID19 pandemic we are not permitted to ‘loan’ toys to children and teens in the hospital. Everything we offer them must be given away for them to take home. This causes us to go through toys and craft supplies much more quickly. Having the support of enCourage Kids donations gives us enough supplies to provide our patients with distraction and normal daily routines and play opportunities.”

On March 11th, the world as we knew it changed. The healthcare industry had to evolve instantly. As the virus rapidly spread, medical professionals found themselves under-resourced and spread thinly. For children receiving care in the hospital, this, unfortunately, meant less support and increased isolation.

Imagine this: You are five years old, in a hospital bed, surrounded by adults you don’t know. They are all wearing masks and you cannot see their facial expressions or reassuring smiles. Everything around you is new and scary and you don’t quite understand what’s going on. You cannot go play, you cannot have your whole family by your side, and you are confined within the walls of your hospital room. This is the reality right now for pediatric patients nationwide.

Hospitals had to act quickly and take precautions to reduce the spread of infection and germs. They immediately imposed strict visitor restrictions and closed their playrooms. At most facilities, these changes have remained in effect over the past six months and will most likely continue through the end of 2020 and beyond. The hospital has always been a scary and uncomfortable place for kids, and these safety measures, while important, have taken an added toll on pediatric patients. They are left incredibly lonely, afraid, and overwhelmed. This is where enCourage Kids steps in.

Through our frequent communication with child life specialists, we learned of the urgent needs of their patients and their facilities. We jumped right in to help address those and provided items and support to offer patients critical comfort and distraction.

As New York hospitals were becoming more and more overwhelmed at the beginning of the pandemic, we provided 50 child life specialists with gift cards, putting the power back in their hands and giving them the ability to purchase items they specifically needed at their hospitals, for their patients.

We also sent 400 pediatric patients nationwide our enCourage Kids Bear, Teddy, to help them manage the extraordinary stress and isolation they were facing. He became a hand to hold and a trusted companion for young patients throughout their stay, giving them encouragement and support when they missed their families. While being in the hospital during a pandemic can be especially frightening, playing with Teddy feels safe and familiar. One of the most important features of the enCourage Kids Bear is that each arrives individually packaged, meeting the hospital’s strict infection control protocols, especially in the midst of even stricter policies and procedures.

Along with gift cards and Teddy, we sent supplies and Care and Coping Kits to medical facilities nationwide to provide their patients with activities and entertainment during this time of heightened isolation. With strict safety protocols in place, hospitals could only receive donations directly from organizations like enCourage Kids. The supplies and kits we sent included age-appropriate activities, coloring books, a variety of craft materials, as well as games, cards, and small electronics for kids to play with. These offered therapeutic distraction and helped to calm kids during long wait times and in between treatments. With hours of entertainment, the hospital environment felt more friendly and comforting, allowing children to experience a break from their pain, difficulties, and loneliness. We extend a very special thanks to The Garden of Dreams Foundation whose generous support helped send 500 Care and Coping Kits specifically designed for teenage patients in the New York Metro area.

Our top priority remains fulfilling the unique needs of pediatric patients and child life specialists, while also adhering to the strict safety protocols in place. Child life specialists were grateful to receive the support that helped them in caring for their patients, and their patients were tremendously appreciative as well. One 14-year-old shared “the mini Jenga® is my favorite. I feel special that someone was thinking of kids like me in the hospital.”

enCourage Kids Foundation is thankful to our generous supporters who helped to ensure children in the hospital have been given support, distraction, and recreation, especially during this challenging and difficult time. We will continue to help young patients cope with loneliness, fear, and discomfort while hospitalized, during the pandemic and beyond.