When most of us consider the needs of families caring for children with disabilities—assuming we think about them at all—buzz words like medical care, therapy, and special education might come to mind. But, if you ask a parent with a child who has special needs what he or she needs most urgently, the answer will most likely be, "time off."
Nationally, there are some 16.8 million families caring for a child under the age of 18 who has special needs (Source: Caregiving in the United States; National Alliance for Caregiving in collaboration with AARP, November, 2009). These families are far more likely to experience divorce, are more likely to struggle financially (Source: Council for Disabled Children, July 2006), and spend more than 11 hours each week just coordinating care (Source: U.S. Department of Health and Human Services, 2007).
Unfortunately, the families who could benefit most from the support of their communities are often the most isolated. Unlike moms and dads of typical kids, parents of children with special needs cannot just call a neighborhood teen to babysit. While most families never give a second thought to putting their children in the church nursery or sending them to summer camp, parents of children with special needs struggle to find caregivers with the specialized skills and training their kids need.
For families without first-hand experience with special needs, the question of how to help may seem daunting. Not knowing how to help can lead well-meaning people to do nothing. What a shame when they do.
One of the easiest things we can do to help such families is to give the “gift of time.” A few hours, a night--or even a weekend--off can be a lifeline for families who are often at their breaking point. And while you may not have the specialized skills to act as a caregiver, you can help connect these special families to those who do.
We can show our support for families struggling to manage the emotional and financial demands of constantly being “on alert” by offering some desperately needed relief.
At Jill’s House, a full-service, overnight respite center that celebrates children with intellectual disabilities, we encourage parents to build a rhythm of respite into their lives, allowing room to recharge so that they can be their best selves as parents and spouses.
Respite—just getting a break for one night to be with other children and sleep—is critical to keeping the parents of children with special needs going strong. Overnight respite allows parents to focus on their marriages, devote more time to typical siblings, get caught up on work, catch up with friends and family, handle typical household chores and maintenance or even get a full night’s sleep.
Our new families repeatedly cite the need for reliable overnight respite care as their most urgent unmet need. To families with children with special needs, there is no greater gift than time away to recharge their batteries and reconnect with other family members, secure in the knowledge that their child with special needs is safe and cherished.
Diagnosed with cancer, one of our parents schedules her child’s visits to Jill’s House to coincide with her chemotherapy treatments. She can get the treatment she needs, knowing her child is well cared for and having fun. One family had never been to dinner and a movie in the theater, since its child with special needs could sit through neither. One evening, while their child stayed at Jill’s House, the parents and siblings experienced dinner and movie together for the first time.
While members of Congress debate the details of the health care plan and local governments weigh options for finding the necessary funding for early education programs and other supports to persons with disabilities, parents of children with special needs can’t wait for government solutions. They need us, their neighbors, to offer our help.
This holiday season and in the new year ahead, why not offer the gift of time to a family in your community raising a child with complex needs?
Cameron Doolittle is president of Jill’s House in Vienna, Virginia. Jill’s House opened in 2010. It celebrates special children and provides respite, renewal and peace of mind to their families through overnight programs and day camps. Jill’s House offers an innovative 42,000-square foot, 45-bed respite resort for children ages 6 to 17 with intellectual disabilities and their siblings. Receiving no direct state or federal funding, Jill’s House was created and is maintained through individual donations and foundation grants. To find out more visit JillsHouse.org or follow us on Facebook at Facebook.com/jillshouse.