'Invaluable' program gives respite to parents of children with special needs

Newswise — Jennifer Gangi rarely gets any time to herself. Beyond the typical difficulties of being a single mother to two young children, the West Kingston resident faces the additional daily challenges of caring for a child with significant special needs, leaving her little time to catch up on chores, work around the house, or even just take a break.

“It’s impossible to catch up on things that need to be done with two kids around. I have a ton to do. I’m going to run home and get as much stuff done as I can,” Gangi said on a recent Saturday afternoon after dropping her children off for a couple hours at the University of Rhode Island. “Sometimes, I just need to rest, especially if I’m not feeling good, which is really hard to do with young kids. Having these four hours is really helpful. You just don’t get that time, otherwise. I’m a single parent, so it’s even more important. This program gives you some relief as a parent.”

The program, organized by URI College of Nursing Professor Chris McGrane, provides respite care for parents of children with special needs, at no cost to them. For four hours every Saturday afternoon, McGrane and her team of URI Nursing and Health Sciences students, take care of children with special needs, ranging from mild to severe, giving their parents a chance to take a break from the sometimes daunting responsibilities of care.

“There’s a full range of special needs. Some are ambulatory, some not; some are verbal, some non-communicative,” McGrane said, noting it is difficult for parents to find someone willing and able to care for a child who may have profound special needs. “There are kids with autism across the full spectrum, kids with Down syndrome, cerebral palsy, brain injury. We provide direct care in a group setting, and families get some respite to step away and do whatever it is they feel they need to do to take care of themselves.”

The program takes place every Saturday, from noon to 4 p.m., in the Department of Physical Therapy facilities in Independence Square on the edge of the Kingston campus, where there is plenty of parking and easy access to the building for people with disabilities. Each week, about 20 children play together with toys and sports equipment, run around in the fields outside if weather permits, or watch a movie on a lecture hall big screen. Students from nursing and physical therapy, as well as Human Development and Family Science, keep a sharp eye on the children and provide direct care when needed.

“The nice thing about having the students is they have expertise, and they learn from each other,” McGrane said, noting the program counts as clinical hours for nursing and physical therapy students. “Physical therapy can guide nursing students on getting the kids in different positions to work on head control, for example. Nursing students can help with gastronomy tube feeding and more medical needs. I always try to make sure I have students one-to-one with the children, sometimes two-to-one for highly special needs children. It’s kind of a win-win—education for students, and free respite care for parents.”

While the children benefit from the therapeutic play and enjoy the program, the parents are intended to be the main beneficiaries. The program grew from McGrane’s dissertation project for her recently completed Ph.D. in nursing, which focused on parental stress and whether respite care alleviates stress for parents of children with special needs. McGrane conducted a pre- and post-program stress survey for the parents, finding a significant drop in stress levels when they get even a short time to step away.

“One mom and dad went and took a walk along the (Narragansett) seawall. It was the first time they took a walk alone together in 10 years,” McGrane said. “Sometimes they’ll go home and do some yard work, or they’ll go grocery shopping because it’s just so hard to take kids in general to a store, never mind you need a wheelchair in addition to the cart. These are things that we take for granted that are that much more difficult when caring for someone with special needs.”

Wakefield resident Cliff Bannon understands the value of getting a little time to step away. Father of Teagan, who has Down syndrome, Bannon said it is very difficult to find time to rest, recharge, or socialize with other adults, which the URI program allowed him to do for at least a short time on a recent Saturday.

“Parents with special needs kids don’t get to take breaks. You are on all the time. And you can’t just get a babysitter from down the street,” Bannon said. “But you need time to get chores done, get stuff done around the house, or just take a break. We are going to go out to lunch with a couple friends without the kids for a couple hours. You just don’t get to do that very often. This program gives you some time. It’s invaluable.”

Any parents of children with special needs interested in applying for the respite care program can contact McGrane at [email protected] or 401-874-5347.