Center changes lives of children with cerebral palsy.
When life throws a curveball at a child with a disability, the Cerebral Palsy KIDS Center helps them sock it right back. The center on Eastern Parkway does that for about 300 children a week on an outpatient basis with help from the WHAS Crusade for Children, which kicks off its 54th annual appeal on radio and TV this weekend.
The KIDS Center is a can-do kind of place that demonstrates how the donations people put in the boots of the firefighters from nearly 200 departments this weekend can dramatically change children’s lives. The center is one of the many agencies, hospitals and projects in Kentucky and Southern Indiana that the WHAS Crusade for Children financially supports. It has raised $118 million since 1954. Most parents never dream they’ll need anything like the KIDS Center. “The parents are pretty devastated when they come to see us,” said David Ramer, executive director of the center. When they find out they’re going to have a baby, they start planning right away on what colors to paint the baby’s room and what name (to choose),” he said. “They never plan what they’d do if they had a problem. We’re that planner for them.” It’s not easy and usually heartbreaking when parents first meet with the center’s staff. “They’re often not past tears and crying,” Ramer said. He compared it to the stages dying people go through. “But instead of mourning a death, they’re mourning the death of a perfect child. So they go through the anger, the guilt, until they understand and start accepting. That’s when we can really start working with them,” Ramer explained. Attitude is the first disability the center has to deal with. “When they come here, they’re focused on the disability,” Ramer said. “They have been told their child will not ever be able to do this or that . so they’re looking at the negative side.
Our first order of business is to turn that around . to begin helping them to see the abilities the child has . to try to get them to focus on possibilities and potential.” “It felt like getting hit in the gut,” said Jennifer Greulich, who with her husband, Don, learned their son, J.R., had cerebral palsy when he was a year old and couldn’t sit up. “They didn’t give you a lot of hope 30 years ago,” said Greulich, who was a special education teacher working under a Crusade grant at a Bardstown, Ky., school at the time. “He was 4 or 5 years old when he started here in 1979,” said Ramer, who has been at the center for 28 years himself. “J.R. has a severe form of palsy. He could walk but very awkwardly. He could talk, but it was difficult to understand him,” Ramer recalled. “He had just about every therapy and program the Crusade helped fund over the years.” Today, the young man is a university graduate and a chief financial officer at a local engineering firm, Ramer said. “My parents didn’t know where to go,” J.R. Greulich remembered. “It’s made a huge difference in my life as well as my parents’ because we were all learning at the same time and because no one knew what the future would hold.” He is also now on the board of directors of the non-profit, private center. “I feel like whenever you are successful at what you do it’s always important to give back because the center had given so much to me and my family,” he said. “The center gave us the hope and him the confidence to keep trying,” said Greulich’s mother The Crusade has contributed more than $650,000 to the center and given it a grant every year since its beginning nearly a half century ago.
“The Crusade support is so valuable,” Ramer said, “because it supports programs that can basically help these people get through uncharted waters.” The center has a hard-working staff of 28 people, including university-educated therapists and specialists. It helps children through age 21, but the major emphasis is from birth through 6. The average staffer has been there for eight years, but some have been on board for 15 or 20 years. They work with speech, physical therapy and other treatments and get the parents as well as the children to join in the process. At times, the center works with second generations of families. “When I was 9 or 10, I was clumsy, falling down and had a lot of pain,” recalled Robynn Jones of Lanesville, Ind. Testing revealed she had a mild case of cerebral palsy, and she was referred to the center for help. She went on to graduate from college, marry, have two kids and adopt two foster kids who are now being helped by the center. Her 8-year-old daughter, Tori, had severe cerebral palsy from infancy, but the Joneses took her in as a baby and adopted her. The center’s work, along with some medical procedures, has literally helped put the little girl on her feet. “She wasn’t really walking at all, but now she can walk with a walker,” her mother said. “She’s made a lot of progress.” Tori was on stage for last year’s Crusade telethon. Jones and her husband, Doug, also adopted Phoenix, a boy with a brain injury who is 4. He’s also involved in therapy and group exercises at the center, which helps children with all sorts of problems, from cerebral palsy to autism, brain injury, Down syndrome and spina bifida. “The Crusade is a vital part of helping keep the center current,” Jones said. “We try to help the children come as close as they can to the skills they should have at their age,” Ramer explained. Therapists teach children how to sit in a chair, to walk and talk . to feed and dress themselves . to make them as independent as possible.” This year, Crusade funds built a special playground with equipment such as a wheelchair glider to help children learn skills outside where they can have some fun while learning. The center grew out of a grassroots agency formed in 1952 “because there was nothing in the community at all for kids with these kinds of disabilities,” Ramer said. WHAS did a telethon for the fledgling center in 1952 and ’53 that went on to expand into the Crusade for Children.
It wasn’t until the 1970s that the federal government stepped in and told states that their public schools had to provide an education for children with disabilities and special needs. “In the 1950s and ’60s everybody was kind of on their own .,” Ramer said. “The kids just stayed at home.” A lot of that has changed because of a lot of people and agencies, including the Crusade, but the need is greater than ever “and our caseload keeps growing,” Ramer said. The center doesn’t turn children away. The parents pay for treatment on a sliding scale according to their income. Many can’t afford anything, but they still get a helping hand, which is why the Crusade hopes people will put something in the outstretched hands of volunteers this weekend.
