by Nicole Myers, PhD
Raising a child with a disability has its rewards. Families learn to celebrate small successes and thoroughly appreciate when their child succeeds in areas where she has previously struggled. However, there are times when raising a child with a disability is a challenge. Not only does a family need to adjust to their child's disability, but research clearly indicates that there are additional stresses associated with raising a child with a disability, not the least of which are: the amount of appointments for medical and support services, challenges learning how to tailor home supports, and working with school personnel. Families of children with disabilities are often over-stressed as they try to juggle medical appointments during work hours and care for the children with a disability and their siblings. In fact, several studies have demonstrated that parents tend to get tired and depressed, yet they may sacrifice their own health and well-being to meet care-giving needs of children.
Respite care is temporary care of a child or individual with a disability that allows a care-giving family to receive a break from care-giving. Research has also demonstrated that respite care can make a significant positive difference in the lives of families with children with disabilities. Respite care allows family members to take a break, to participate in social activities, to increase their social well-being, and has been demonstrated to have a positive impact on family relations (Cowen & Reed, 2002). Respite care may allow parents to have a much needed "date night" with each other, it may allow parents to spend time with their typically developing children, and it may just give parents the time to make a doctor's appointment, read a book, and rejuvenate for a few hours and become better able to deal with any stresses when their child returns.
With the positive effects of respite programs demonstrated by research, one would think these programs are abundant. However, finding a respite program may be more difficult than one would think. Parents must first determine if the need is just for childcare or if there is a need for the child to socialize in a learning environment; some children need both. In our area, the Arc of Rappahannock provides a list of sitters in their SOS program that parents can utilize in their home. This is really helpful to children who may do best in their home environment with their own supplies. In addition, families receiving federal assistance funding may often use this funding toward respite sitters.
Another local program run by The Arc of Rappahannock and University of Mary Washington is called Daybreak. Daybreak is an educational program where UMW students in education and psychology develop and oversee educational activities and arts and crafts with children under the guidance of faculty and student coordinators. Children participate in activities with an UMW volunteer, and the low student-to-volunteer ratio allows children to succeed in activities. Children participate in theme-based educational activities that focus on play-based learning of social, behavioral, and academic goals appropriate to the child. To learn more about Daybreak and to access an application form, please visit: http://www.umw.edu/cgps/med/teaching_students_with_aut/default.php.
Our local disAbility Resource Center of Fredericksburg maintains a resource list for respite as well, and can be viewed from their Web site, at http://www.cildrc.org/DRCPages/InformationReferral/InfoReferral.htm
For those families looking for respite in Northern Virginia, Mclean Bible Church offers multiple respite programs in their Access program. Visit http://www.mcleanbible.org/pages/page.asp?page_id=92026 for more information.
Everyone needs a break from parenting from time to time. Respite can provide families with the breaks they need and quality care their children deserve. Respite is not a luxury for families with children with disabilities; it should be a support plan for parents to renew energy and their spirits! If parents know their children best and will be their advocates throughout their lives, parents must take care of themselves regularly to be the best advocate and supporter for their child.