Wednesday, July 9, 2008

Program offers break for those who need it most

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When Silver Spring resident Robin Lee discovered a program offering ‘‘pampered nights off” to caregivers of children and adults with developmental disabilities, she signed herself up immediately.

Although she says she has a special bond with her 15-year-old son Devonte, working long hours each day and caring for a teenager with a disability is tiring. Caregivers often wish for a night to unwind, Lee said, but they do not always admit they need one.

Lee learned about the program through her son’s school, the National Children’s Center’s Maryland campus in Silver Spring. The school and its two campuses in Washington, D.C., are for children and youth up to 21 years of age who have disabilities too severe for public school systems.

Lee and four other families who attend the three schools were chosen last month as the first recipients of the nonprofit National Children’s Center’s ‘‘respitality” packages.

‘‘It was nice to see other parents out there who are in the same situation,” said Lee, who works as a bus driver for seniors at the Jewish Council for the Aging of Greater Washington.

Respitality is a combination of respite for caregivers of individuals with disabilities and the hospitality community’s donations of services such as meals, hotel overnights and spa treatments. The nonprofit also provides caregivers with stipends so they are able to find replacement caregivers for the time they are away.

Lee will take her ‘‘night off” July 19 with a hotel stay and trip to see ‘‘Jerry Springer: The Opera” at the Studio Theatre in Washington, D.C. A mother of three, Lee works a split shift with a few hours in the middle of the day to run errands or take Devonte to doctor appointments. Her parents, Dorothy and Pete Lee, and sister Reva Lee help take care of Devonte when she is at work.

‘‘I’m sure I’ll end up doing flips on the bed,” Lee joked of her night off at her mother Dorothy’s home in Silver Spring recently.

‘‘Yeah, let loose!” her mother said.

Lee, who worked at a group home before her children were born, knew something was wrong with Devonte when he was 3 years old. Doctors told her he had mild mental retardation, and would not be able to walk or talk. Devonte has since accomplished both, although he talks in fragments and has the mental capacity of a 3- or 4-year-old, his mother said.

At 5, Devonte had surgery to reduce the size of his tongue, which had grown so large that he was unable to eat solid foods or drink enough to keep from dehydrating.

Since then, the family has learned to communicate through short phrases, hand gestures and facial expressions. At his grandparents’ house in Silver Spring recently, Devonte clapped and smiled when his mother told a story of him getting into mischief with his little brother, 5-year-old Shion, or how he learned how to walk on the family’s treadmill, with the help of his aunt Reva.

‘‘He’s an inspiration to all of us,” Robin Lee said.

Philip Campbell, NCC’s chief executive officer, said he hoped the services could be offered year-round. The nonprofit would need from $100,000 to $150,000 annually with additional staff support to offer the packages each weekend.

‘‘Many families with a child or an adult with a disability don’t have the opportunity to have a night away, or even a relaxing afternoon,” said Campbell, who first learned about ‘‘respitality” programs in Boston 25 years ago.

Lee said she was thankful for her night off, but it was her family and her faith that provided her with strength in the day-to-day care of Devonte.

‘‘We struggle, but you just keep on praying,” she said.