March is Child Life Month! Every day, the Child Life Specialists with our Community PedsCare program help support patients and families dealing with life-limiting and life-altering illnesses.
We asked our Child Life Specialist, Leah Stapleton to describe what it’s like to provide support for children and families in our Community PedsCare program.
My name is Leah Stapleton. I'm a Child Life Specialist with the Community PedsCare program team since 2019.
As a Child Life Specialist, I work with children and families in hospitals and other settings like hospice. I help children cope with the challenges of hospitalization, trauma, illness, and death. We provide children with age-appropriate preparation for medical procedures and debriefing, often through medical play, expression, and coping activities. We also facilitate end-of-life education and memory-making interventions.
Community PedsCare Child Life Specialists have the unique privilege of working with patients in their homes. Unlike Child Life Specialists working in hospitals, I get to work with patients and their families. We also work with patients long-term, partnering with the interdisciplinary team of RNs, Psychosocial Specialists, and other disciplines. Child Life Specialists also assist in support groups and event planning.
Ellie is a 5-year-old with a complex heart condition, and I have worked with her and her family for a couple of years. Ellie and I primarily play when I visit her. I encourage autonomy and control as she loves to be the doctor and director of her play experience. Since Ellie has had many traumatic hospital experiences, play allows her to process some of the feelings and emotions related to those difficult experiences.
When I work with Ellie's mother, we come up with ways to support her daughter. One time we let Ellie choose her own "special band aides" when getting lab work done or adding scents to an oxygen mask to reduce the unpleasant odor. It's encouraging to see how far Ellie has progressed when talking about her emotions and experiences with doctor visits and hospitalizations.
I'm encouraged to think back on how much progress Ellie has made when talking about her emotions and her experiences while visiting doctors or being hospitalized. I will never forget when Ellie went from only wanting to play with her mom to welcoming me at the door when I visited. She has a great sense of humor too! She often has her mother and me laughing at her commentary.
I believe it is crucial to support families with life-limiting illnesses. While Ellie has lots of support and love from her family and her community, both she and her mother deal with day-to-day struggles far beyond what most of us understand. Families that face these complex medical challenges deserve the support programs like Community PedsCare offer. I am so grateful that this program is here in Jacksonville however, I hope similar programs become more common and accessible in other areas of the country.