We interrupt today’s post to congratulate the winner of The Caregiver’s Notebook give away, Pam Christensen. Here’s what she says about how she plans to use the book:
Both of our sons have different learning disorders and ADHD. It gets complicated keeping track of their various appts, meetings with teachers, therapists reports, medications, etc. I’m looking forward to using this resource to organize it all in one place. As a caregiver for not only our sons, but also for my mother, I’m also looking forward to using the prayer guide.
Thanks to all who entered the give away. In the next few months, several other bloggers will be hosting Caregiver’s Notebook give aways. The easiest way to enter them is to like my Facebook author page or follow me on Twitter (@jolenephilo) where they’ll be publicized. Now, back to our regularly scheduled programming.
Special Needs Respite & Jill’s House
Parents of kids with disabilities need a break now and then. Cameron Dolittle, director of the respite facility Jill’s House, is passionate about providing quality respite for parents in the Washington, DC area and about training teams to do the same thing all over the country. In the first post in a series about respite for families of kids with special needs, Dolittle introduces you to Jill’s House and one of the families they serve.
Waverly was four years old and Oliver was 15 months old when they were diagnosed with Sanfilippo syndrome. The life expectancy for someone with Sanfilippo syndrome is 12 to 18 years old. During their short lives, Waverly and Oliver will meet a few developmental milestones but then slowly lose them all. Their parents, Matt and Shannon McNeil, were forced to adjust their expectations for their children. Shannon explains, “Playdates and sleepovers became physical therapy sessions and doctor appointments.” Like so many other parents raising children with special needs, they had to grieve the loss of the what-should-have-been to embrace the what-is.
The staff of Jill’s House loves Jolene Philo’s book, A Different Dream for My Child, and particularly the part in which she describes parents, like Matt and Shannon, who had great dreams for the children. She writes, “When their children became ill and their dreams changed, they slowly, and sometimes painfully, embraced the different dream God had fashioned for their children and found joy.” This is an important process for parents raising children with a disability, or a chronic or fatal illness.
How Special Needs Respite Supports Parents
At Jill’s House, we have the privilege of supporting families through that process. Jill’s House is a short term overnight respite facility for children with intellectual disabilities between ages 6-17. While not many families hope to have a child that qualifies for our programs, God has provided a place of hope and healing for the ones who do. Located just outside of Washington DC, our 42,000 square foot building holds 45 beds, an accessible playground, computer lab, gymnasium, library, and indoor pool. The children stay overnight and their parents get a break.
This break renews the entire family. Parents of children with special needs experience 60% more stress than the rest of the population and are 80% more likely to get divorced. Since we opened in 2010, we’ve been proving empirically that an overnight break drastically lowers a family’s stress level. Shannon explains that while Waverly and Oliver are at Jill’s House, “We have an opportunity to connect and feel refreshed, to re-center ourselves to deal with the never-ending stress of parenting two terminally ill children.” These short breaks help caregivers be better spouses and parents.
How Special Needs Respite Supports Kids
These breaks are also good for the kids. Shannon explains, “We try to accept that Waverly and Oliver will miss out on so many milestones in life, such as their first dates, driving a car, and getting married. But they have also missed out on so many quintessential childhood activities.” At Jill’s House, kids like Waverly and Oliver have the opportunity to experience those childhood activities. Shannon says, “Jill’s House opened our world back up. Waverly and Oliver finally have a place of their own. Jill’s House was made for kids just like them. Every room and activity is modified to allow them active participation. Sleepovers and playdates are possibilities once again.”
Waverly is now ten years old and Oliver is seven. Matt and Shannon know that the next few years are going to be extremely difficult for their family. Shannon says, “We are grieving, but thanks to Jill’s House, our children know only joy and unconditional love.” (To watch a video about the McNeil family, click here.)
Jill’s House serves hundreds of families like the McNeils in the DC area. But we know that there are thousands of families affected by disability across the country who need respite. In next week’s post, I’ll share the steps we’re taking to meet that need. You’re going to love what God is doing!
Your Special Needs Respite Story?
What’s your special needs respite story? Are you able to access it? Are you trying to find it? Leave a comment about your experience in the comment box. And come back next Monday for Part 2 in the special needs respite series.
Cameron Doolittle has been President & CEO of Jill’s House since it opened in 2010. He loves that families find physical and spiritual rest through Jesus, and that Jill’s House is helping prepare a new generation of leaders to love children with special needs as God does. Before he came to Jill’s House, Cameron was the “new business launch guy” at Corporate Executive Board. He’s a graduate of Stanford University and holds a JD/MBA from UC-Berkeley. Cameron and his wife, Carolyn, live in Falls Church with their four young children.
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