'Entering Someone Else's Story.' What It Means to be a Child Life Specialist
Why these trained pros are more than bringing iPads and playing games
For 10 years I’ve been walking into hospital rooms and entering someone else’s story. For 10 years, I’ve made eye contact with the precious kiddo on the bed and told them that I was there to make sure they understood everything that was happening to and around them and to help them while it happens.
For 10 years, I have played UNO, Barbies, created art, blown countless bubbles, provided toys, got colors, given prizes, celebrated birthdays, sang songs, read books, attended programs, got popsicles, found the perfect stuffed animal, spied all the things in a room, learned all the favorites, celebrated kids doing really hard things well and the lady bringing the iPad.
And while all of those things are sacred and a precious part of my job, for 10 years I have also held mom’s and dad’s hands, wiped kiddos’ tears away, answered hard ‘what if’ questions, sat on the floor with scared patients and weeping family members, attended funerals (and weddings), pulled back hair, explained new diagnoses, helped kids plan their last wishes, told countless siblings that their brother or sister died, cried in the bathroom in the middle of a shift, checked to make sure my own kids were breathing at night, sat with kids as they tell their mom’s and dad’s goodbye and go to a new family or leave with a stranger, made handprints and footprints and cut locks of hair, and been totally humbled that I had the honor and privilege to undeservingly enter into the story of these precious patients and families.
I am a child life specialist. And after 10 years, it is still sometimes difficult to explain all the things that we get to do. It really is the best job, but contrary to the popular belief and cliché that we hold iPads and give prizes, there is a deep alliance between us and patients and families. Sometimes the alliance happens in seconds, and other times it takes multiple attempts at breaking the ice. But in the end, we are people there to be a patient’s and families’ ally and advocate no matter what.
I’ve worked inpatient on a floor with chronically ill children and now work in the Emergency Department with many different patients and families. I began my career in child life as an activity coordinator, who are vital people that make the logistics of the inpatient floors happen all the while providing play and normalizing patients’ environments. I have seen all the ways that child life is utilized across our health care system. Our main goal is to teach children how to positively cope in the stressful environment of the hospital. We do this primarily through preparation, support, education and normalizing the environment through developmentally appropriate play. However, there are many things that we provide that often are not as obvious.
Child Life Specialists see beyond the surface.
We are trained to assess a room in seconds. We have to look through and past the patient and families in front of us, and attempt to know their dynamics and nuances. We quickly assess a patient’s ability to cope, their developmental level, their attitude and responses to the situation, staff and their family, the engagement of parents, and the family’s overall demeanor. Then we are able to advocate for this family and create a connection between the patient and family with the staff. Without this assessment, there is simply a room full of staff, a patient and a list of orders and goals that must be accomplished. Child Life Specialists step in with the knowledge and forethought that leads to compassion, empathy and a desire to see that patient and family do hard things well.
Child Life Specialists are developmental experts.
Not all children are the same, but there are some milestones and expectations that we are looking for in children at different age levels. We are assessing a child’s emotional, physical, intellectual developmental level the moment we meet them. Some children can be very intelligent but struggle with emotional maturity.It is our job to bridge this gap. There may be another patient who cannot communicate, but because of their body language and understanding of the situation, we can assess what they are feeling and advocate to make them more comfortable. It is our job to give children as much control back no matter their age or developmental level because the hospital environment inevitably removes a great deal of their control and comfort. Typically there is a mental list of questions that we are asking patients and families as we learn their level of understanding, coping and ability to recover. We want to provide developmentally appropriate coping skills, normalizing play, and appropriate language in every encounter we have with a child.
Child Life Specialists help create fluidity for health care experiences.
I often hear staff say that they’ve figured out how to “child life” a patient or family. While the skills we offer can be duplicated at times, the value of child life never can be. The role that child life plays in the healthcare experience is incomparable. While the doctors, nurses, paramedics, respiratory therapists and many others are trained to assess patients and perform medical procedures, child life exists to be the voice of all of the things happening to a child. We ensure that patients and families understand each step as it comes and have the opportunity to ask questions. While a nurse is concentrating on making sure that he or she finds a good vein for an IV, we are making sure the patient understands what they will see, feel, hear and experience. While a doctor is pouring over labs and a multitude of information to make sure that the family walks away with the correct and complete information, we are there to help communicate that information and the next steps to that patient and family as simply as possible. It is our job to make sure that the patient and family feel empowered to advocate and ask questions. In the midst of hard conversations, we are playing and doing normal kid things. We exist to help patients and families find peace and order, and often a little bit of fun, in the midst of what can feel like a very chaotic experience.
Every day I leave work feeling somewhat overwhelmed, yet deeply grateful. All health care professionals understand this feeling. In one shift I’ve most likely been in rooms where I held back tears or been in rooms where I had to pull out my “mom voice” pretty quickly. But every shift I have helped ease a patient’s fear, laughed with patients and families, seen another patient do something very hard very well, and helped patients and families understand their health care experience. My hope is that I’ve always made my coworkers' jobs a little easier, and provided a great deal of comfort and peace to the patients and families I meet. I know I’m biased, but I can’t imagine the hospital without child life.
Get to know Ashley Pagenkopf
Ashley Pagenkopf is a Child Life Specialist in the Emergency Department at Cook Children's Medical Center. The Child Life program at Cook Children's offers a variety of services, all designed to make your experience at Cook Children's the best it can be. Our services include educating, preparing and supporting your child through tests and procedures, as well as coping with any life challenges you and your child may face. Child Life specialists work with kids and families to make their visit to the medical center easier and more comfortable. We offer your child and your family an opportunity to express and work through any fears and concerns you may have. We'll also provide an explanation about what's going to happen during your visit and work with parents, brothers and sisters and other family members who may be involved in your child's daily care.