Aaron Resch and five with the Texas A&M University Center on Disability and Development have concluded three years of research that demonstrates family members of children with disabilities are in need of significant support as they deal with the children’s behavioral issues.
In 2007, the researchers conducted statewide focus groups of families who had children with disabilities. The children were diagnosed with disabilities such as autism, cerebral palsy and mental disabilities. Researchers had meetings in every corner of the state, in order to gain the widest variety of participants.
“We were trying to figure out what the parents’ needs were,” Resch said. “When they talked about the challenges they were facing, they never brought up the children themselves. They usually talked about problems they encountered in their communities and surrounding environments.”
Many families had run into the same issues. Accessing health care, undergoing speech therapy, taking swimming lessons, even feeling accepted in their neighborhoods and communities was very difficult for many families, Resch said.
“Often times the families didn’t feel like they were supported,” Resch said. “There was always lots of help available for the child, but there was nothing to aid the parents and children in coping with the hardships of having a disabled family member.”
After weeks of conducting intense focus groups, Resch and the rest of the team had compiled over 500 transcript pages. They spent the next two years analyzing their findings for qualitative data, then coding the information into different topics, and finally narrowing down the data into consistent themes.
The team submitted their research for publication in May 2009. After a year of revisions, their findings were published in the May 2010 issue of Rehabilitation Psychology, the journal of the American Psychological Association.
“The conclusion of our research was that the entire family needs support, not just the child,” Resch said. “The child’s disability isn’t the problem, nor is their behavior; the issue is that many of these families don’t have the resources and support necessary to care for their disabled family member lovingly and effectively.”
Some organizations have already begun to support children with disabilities and their families. Camp Barnabas, a Christian camp in Purdy, Missouri, offers weeklong sessions for children with disabilities and their siblings. All children are invited to a week of recreational activities.
“The objective is for these kids, disabled and not, to get the full camp experience,” said J.D. Smiley, a freshman business major who spent the month of June working at Camp Barnabas. “They get to shoot bows and arrows, play in the pool, go on campouts — everything that makes them feel like normal kids.”
The camp has 10 cabins; four are dedicated for the brothers and sisters of children with disabilities. While their curriculum sometimes differs from that of their siblings, they can participate in every activity the camp offers.
“It’s the most physically taxing thing you could ever do to your body,” said Cole Burdette, a sophomore general studies major. “Just keeping up that energy level and having a smile on your face all the time is tough work. These kids have never experienced swimming, never gone up in a tree house, never shot a bow and arrow. The end of the week is the most satisfying feeling ever because you know you’ve given these kids the time of their life.”