"For families with a special needs kid, respite is truly a blessing.  It allows parents and family members the kind of down time they need to take better care of their child day to day.  Equally important, it gives the child time in a new environment away from parents.

 

Our son Adam Colin Quigley was born with spina bifida, an opening in the spine that leaks spinal fluid and doesn't allow nerves to develop normally.  Initially, Adam would jungle crawl or creep on all fours to get around. When he went to pre-school he learned to use a wheelchair by imitating the other kids.

Respite gives the child time away from his parents and a chance to see and try new things.  Like a lot of kids Adam would refuse to try new foods at home. However, once when we picked him up from a care facility called Almost Home Kids we were surprised to find him sitting by himself at the breakfast table happily eating waffles with a fork, something he'd never try at home.

 

We were lucky to have a supportive family, some of whom babysat and gave us time away from our otherwise 24/7 care schedule. We also had neighborhood sitters, two young girls who watched and played with Adam while I attended to teaching responsibilities, cooked meals, or just rested. Despite this help, my husband and I did not have the chance to get away for an extended weekend or even an overnight stay away from home.  Places like Ryan House, Crescent Cove, and George Mark provide that kind of opportunity for families with children who require round-the-clock care. The need is great. We are happy to hear that Life House Atlanta, another respite care house, is in the works."

 

                                         Marcia Pradzinski & Patrick Quigley

"September of 2000 we became a family of five. Unbeknownst to us our new baby was born with severe health problems. For the next several years our two other children were forced into a whirlwind of the unknown watching their baby brother go in and out of the hospital and countless doctors appointments. Our world was not the norm that they were accustomed to for the first years of their lives. 

 

How nice it would have been to have a respite care facility to visit as a family. Letting go of the confusion and relaxing in an environment of comfort, safety and peace of mind knowing our child would be well taken care of upon visits there as well as the entire family. 

I hope with the support of our communities that Life House Atlanta can and will provide that place for families and loved ones to share, not only being together but knowing they can leave their special needs child with a staff of professionals willing to serve their needs."

 

                                                            S. Young                                                           

"A House that offers respite care to children with life limiting illness is needed in every community in the United States, and Life House will be an asset to Atlanta, and the state of Georgia. I co-founded the first free standing pediatric palliative care House in the United States, George Mark Children’s House in 2004 after years of working as a psychologist in pediatric ICUs, and recognizing that children with life limiting illness and their families needed a warm and comforting place away from jarringly bright fluorescents and countless monitors beeping on the hospital floor.

 

Respite care for medically fragile children in a pediatric palliative care House is focused in equal measure on the well-being of parents and children. Caring for a child with a life limiting condition is literally a 24 hour a day/7 day a week responsibility. As a result of accessing respite care, parents tell us that they engage in self-care activities, experience a reduction in stress, and have time to spend time with their extended family.  Children with life limiting illness frequently rely on breathing tubes, feeding lines, and spend much of their time at home, and thus a respite stay encourages them to gain greater independence, socialize and take advantage of many programs and activities. A respite stay allows children with life-limiting conditions to spread their wings in a medically safe environment, and is life-enhancing for the whole family.

 

I commend the founders of Life House in Atlanta for their foresight and dedication to the many children and their family members who will benefit from their efforts."

                             Dr. Kathy Hull,  George Mark Children’s House, San Leandro, CA

Respite and palliative care

for children with life-limiting illness