Overworked and underslept. Most parents just want a good night’s sleep so they can function oh-so-much better. But if multitasking is difficult for most moms and dads, imagine the compounded challenges of parenting a special needs child.
There are 16.8 million families in America with special needs children, and these parents must constantly be “on alert.” Frequently, they struggle to balance basic care for their special needs child with the activities of other children. The U.S. Department of Health and Human Services estimated that many families of a special needs child spend more than 11 hours each week just coordinating care, and countless more hours carrying out the numerous additional responsibilities that come along with looking after their child. These families are far more likely to experience physical and emotional stress, develop chronic conditions, go through marital struggles and divorce, and face financial hardship than non-caregivers. The daily struggles of coordinating various aspects of care for their child has a long-term impact and can lead to burnout or even breakdown.
So what is the single biggest need requested by families of a special needs child? A little time off.
Lon Solomon, pastor of Virginia megachurch McLean Bible Church, and his wife, Brenda, experienced the need for respite firsthand while caring for their daughter, Jill, who has a severe seizure disorder. Church members offered the Solomons the gift of overnight respite at a time when their family desperately needed it. Lon and Brenda knew there were thousands of other families in need of similar support and rest, and the vision for Jill’s House was born.
Jill’s House opened in October 2010 as a 42,000-square-foot, 45-bed, resort-style overnight respite center tailor made for children ages 6 to 17 with intellectual disabilities and their siblings. Located in in Vienna, Virginia, Jill’s House celebrates these special children and provides respite, renewal and peace of mind to their families through overnight weekends, weeknight programs and day camps during school breaks.
The center it not simply a sophisticated babysitting facility; rather, it provides a safe and fun environment where special kids can enjoy a slate of activities to keep them active, stimulated and learning. Since its launch, Jill’s House has served nearly 200 families and has provided more than 40,000 hours of respite care. The center has a total overnight capacity of 30 children, and there are currently over 300 kids currently on the waiting list to experience a Jill’s House weekend. “Respite—just getting a break for one night to be with your other children and sleep—is critical keep the parents of children with special needs going strong,” said Lon Solomon.
Parents are incredibly appreciative of the opportunities Jill’s House provides for them and their children. “My husband and I are so grateful for the chance to take a break from the 24-hour care our children require and focus on each other. But more than that, we are thankful to Jill’s House for giving our daughter Waverly the summer camp and sleepovers experiences we thought she lost,” said Shannon McNeil, mother of two Jill’s House children with Sanfilippo Syndrome, a rare genetic degenerative disorder. “After the kids were diagnosed, we grieved the loss of many things they would not be able to do. However, Jill’s House has allowed Waverly to have some childhood experiences we never thought she would.”
Although there are very few organizations around the country equipped to offer the type of care and opportunities Jill’s House provides, the center sets a tremendous example of how individuals can reach out to families with complex needs.
Most of us know families in our various communities who have special needs children. Why don’t you offer to provide the gift of respite? Even a few hours for the parents to do some shopping, go on a date night, or attend another child’s school performance together can have a tremendous impact. And next time you think to yourself, “There are just not enough hours in my day” or “If only I could get some time alone,” perhaps you can offer up a prayer for these remarkable parents who truly exhibit a special measure of strength and endurance.