Though being a Child Life Specialist at The University of Vermont Children’s Hospital can be emotionally challenging, it can also be immensely rewarding. As a Child Life Specialist, I am witness to a family’s most intimate and life-altering moments. Supporting children who are navigating the uncertainties of a serious illness, whether their own or a loved family member, is inspiring and humbling. Children have a lot of insight and a level of understanding that I’m not sure adults always give them credit for.
In addition to working with amazing and strong families I have the joy of working with a passionate group of eight Child Life Specialists who always put the needs of children first and work hard to make the hospital environment more supportive for its youngest population. While continuously reassessing how we can meet the needs of our pediatric patients throughout the hospital setting, an opportunity arose to meet the needs of children in the hospital in a different way, by supporting the needs of the child whose parent or adult caregiver is seriously ill or traumatically injured.
This opportunity arose after a gentleman named Greg Couture was diagnosed with stage IV colon cancer. Greg’s main concern after being diagnosed with an incurable cancer was focused on how to support his two young daughters, Makena and Hana. Greg formed the Mahana Magic Foundation (the name is a combination of Greg’s two daughters’ names and means “to create warmth”) recognizing that cancer is a family diagnosis and children in the family could benefit from supportive interventions. When Greg died in 2010, the Mahana Magic foundation was already underway raising funds.
The first order of business was to hire a Child Life Specialist to work as a member of The Cancer Patient Support Program (an independent, non-profit organization dedicated to offering cost-free comprehensive supportive services to cancer patients and their families throughout Vermont and upstate New York, located within the UVM Medical Center). Mahana Magic funds 20 hours a week for a Child Life Specialist to work with the children of adult oncology patients. Since May 2011, I’ve been that Child Life Specialist. An additional 20 hours was grant funded to me by the Children’s Miracle Network at The University of Vermont Children’s Hospital to work full time at the UVM Medical Center in the adult oncology clinic, for meeting the needs of any child who has a parent who is seriously ill or traumatically injured.
Working with the child when the parent is the patient rather than the child, is similar to the traditional role of a Child Life Specialist in the pediatric world. I still help to assess where a child is developmentally and then teach to the child’s particular developmental level. Play is still the main vehicle for education, understanding that children learn about their world through play. The difference is I am not teaching the child about their own illness, I am teaching them about their parent or adult caregiver’s illness.
I am available to meet with families upon diagnosis to discuss how to tell children about a serious diagnosis. This can be a hard conversation. Often, patients are still reeling from the news and it can be hard to comprehend telling anyone what is going on, but especially hard to think about telling your own children. With various resources and guidance, we can explore different wording to use to explain a diagnosis honestly, but gently, to even the youngest of family members.
After a family has had some time to process, I can meet with children one-on-one or as a family to answer any questions they may have; give tours of the hospital where their parent may be or may have to come; facilitate medical play to help children process and understand a parent’s diagnosis (which also helps me to understand what misconceptions the child may have so that those can be addressed); help to normalize the hospital environment for children who are visiting with opportunities for play and diversion; and in very serious cases, help families to prepare for telling children about the death of a parent or adult caregiver. Like all of our Child Life Specialists at The University of Vermont Children’s, I can work with families when an end-of-life situation occurs. Finding the words to explain loss to young children is especially challenging. Child Life Specialists have resources that help address grief and loss gently and compassionately, so that all members of a family feel supported when support is so desperately needed.
To access Child Life support for the children of an adult patient, I can be reached Monday through Friday at 847-4069. Child Life services for pediatric patients can be accessed by calling the Child Life office at 847-4913.
Alexandra Waltien is a Child Life Specialist at The University of Vermont Children’s Hospital at the UVM Medical Center.