SickKids Child Life Specialist Shaindy Alexander writes about how she supports young patients through the worst diagnoses.
Evelyn* was 11 years old when she was referred to the palliative care program at SickKids. She’d become ill two years earlier. She understood her diagnosis and sometimes asked questions about her disease and the treatments. But often, she preferred not to talk about “the hard stuff.” Evelyn and her family were focused on living each moment as best as they could, even amid the physical limitations of Evelyn’s disease and the restrictions of the pandemic. Evelyn used her imagination as an outlet for emotional expression. She painted, wrote songs, and made crafts. She wanted to ensure her family could later reflect on the fact that she understood that she might die young and chose to live each day to its fullest.
I was Evelyn’s Community Psychosocial Support provider, a donor-funded, home-based service for palliative care patients. Together, we made gifts for loved ones. We sculpted difficult dreams and events with playdough—and then squished them. We made calming jars to remind her to take deep breaths when she felt anxious. We played games to get lost in the moments of just being a kid. When Evelyn was closer to her end of life, she felt supported and ready to ask questions about death and dying: How do you know that I won’t be buried alive? What happens after you die? Will I feel pain? She made handprints for family members and told her parents how she hoped they would celebrate her birthday each year.
As a certified Child Life Specialist, I use play and creativity to build rapport and support patients dealing with difficult medical and life events. Children and teens speak a different language than adults. A skilled interpreter must be present during serious illness to ensure young people are fully included and supported in their journey…[read more]
https://www.globalheroes.com/helping-kids-through-terminal-illness/
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