An innovative JMU program pairs students with Harrisonburg-area families who need respite care services
By Jamie Marsh
Claude Moore Precious Time Pediatric Respite Care Program pairs JMU juniors with Harrisonburg-area families.
Lisa Will describes her son Chase like a typical 8-year old boy: "beautiful, full of himself." Yet most babysitters can't handle Chase — because he also has Down syndrome. Chase's special needs demand that Lisa and her husband give him almost constant attention. Nevermind a Mommy-Daddy date night; the Wills sometimes struggle to squeeze in grocery shopping and lawn mowing.
Chase's complex needs set up a challenging "barrier of isolation," according to Rhonda Zingraff, director of JMU's Institute for Innovation in Health and Human Services and College of Integrated Science and Technology associate dean. "We often think of barriers to healthcare on the basis of what is available or what is affordable, but this is different, less widely acknowledged," Zingraff says. The barrier of isolation may surround any home where a child has pronounced needs from autism, blindness, deafness, emotional disturbance, mental retardation or other disabilities. "Your average friend or babysitter may not have the skills required to care for your child, and many of us have a cultural inclination to try to manage our private lives alone," Zingraff explains. "So when does a mother get her dental appointment? What if she gets the flu? How does she leave that child for even a brief time and feel any confidence or peace about having to leave?"
For the past three years, the Will family has received respite from JMU nursing students, part of the grant-funded Claude Moore Precious Time Pediatric Respite Care Program. Students pair up and visit Harrisonburg-area families for 14 hours each semester, earning credit toward a pediatric clinical course taught by Catherine Webb. Webb had the initial idea for the program that Lisa Will calls a godsend. "The girls do things that interest Chase, whether it be jumping on the trampoline or taking a walk or just watching a movie."
Likewise, the students are the "highlight of the week" for Lynda Chandler Capaccio and her 7-year old son Valor, who has Autism Spectrum Disorder. "Caring for a child with special needs should be viewed as a worthwhile endeavor. Unfortunately there are few social support opportunities in our community to help families who need help, families like mine. I am grateful to JMU," she says.
Both families applaud the nursing students for impressive levels of energy, enthusiasm and professionalism. "This program is a benefit to the families of course, but it's also of benefit to the students," says Darcy Bacon, community and family liaison for Precious Time. "It gets them out of the classroom, it is a hands-on learning experience, and they gain confidence working with children with special needs so when they actually encounter them in a hospital or medical setting, they know how to interact with them."
Bacon adds that the mutuality of the relationship is a motivating factor for some families who participate. "They like knowing that it's a win-win situation, that they're receiving help but they're also helping our nursing students." Students often say the experience expands both their care giving skill and their character. Through Precious Time, senior Sarah Bennett learned "the value of finding happiness in the small things of life and remembering to find time to laugh every day," she says.
Precious Time benefits community families and JMU students who gain valuable hands-on experience through the program.
"The first time they come to the house they don't know what to expect and how a child with special needs is going to act," Lisa Will explains. "By the end of the semester you see the comfort that they have acquired in being around him. This is a good thing! Not everyone has the luxury of having a Chase in their life! It makes me feel good to think that Chase is helping these girls be better in their careers of choice."
Precious Time will be reapplying for a grant from the Claude Moore Charitable Foundation in 2011, and there are plans to expand the program in coming years to include a course open to other health and human service majors and a summer course that could foster continuity year round. New families are invited to apply for this service. More information is available at www.iihhs.jmu.edu/precioustime or by calling (540) 568-3280.