Pepper Jones’ middle son is 14, with a sneaky sense of humor and a love of playing baseball and basketball. He also loves playgrounds, but to use one, his mother has to load him in the car and drive him as far away as Round Rock.
Jaylon, known at home and school as J-Bug, has a rare genetic disorder that has required more than a decade of occupational therapy and surgeries and sometimes requires him to use a wheelchair. Like many children with disabilities, he is unable to use a conventional playground, even ones that are built to official handicap-accessible standards.
“In all honesty, the way they’re set up, with all the climbing, he tires too easily to get full enjoyment out of it,” Jones said.
Now Jones and a group of other advocates for the disabled are making the case to the city of Waco for an “inclusive playground” that could serve people of all abilities, including those in wheelchairs. And city officials are listening.
Parks and recreation director John Williams presented the idea to Waco City Council this week, assisted by Jones and an official from Mosaic, a ministry to disabled adults. Williams has been discussing the concept with the advocates as part of the update of the Waco Parks and Open Space Master Plan, which will be finished in early 2017.
“All of our parks are ADA-accessible,” he said told the council, referring to the Americans with Disabilities Act. “But that doesn’t mean they’re all-inclusive.”
Williams has toured six inclusive parks in other Texas cities, and he hopes to work in the coming year on firming up costs and possible locations and designs. The park could potentially serve a McLennan County special-needs population estimated at 20,000, plus out-of-town visitors and children without disabilities.
“For me personally, it’s a very high priority,” Williams said in an interview. “We talk about the inclusiveness of the community, and this is right within that whole ideology. . . . I’d like it to happen sooner rather than later.”
Support from council
Several council members expressed enthusiasm for the project. Councilman Wilbert Austin said he knows of a family that lives across from a park, but their children are disabled and can’t use it.
“I’m glad you brought this up,” he said.
Councilman Jim Holmes said Waco has developed a “critical mass” in population and parks amenities, and this is a logical next step.
“We need to take care of this as soon as possible,” he said.
Jones has already worked with designers to do a rendering of a possible playground design, which she estimated would cost about $384,000, not counting wheelchair swings or restrooms.
She told the council Tuesday that she and other advocates would be willing to help raise money for the project, possibly using grants.
Jones said the city would have to study a location for the park. She said her preference would be to find a centrally located site with plenty of space where a brand-new playground could be built, rather than trying to retrofit an existing playground.
The playground would have wide walkways and smooth, resilient surfaces rather than mulch. She would like to see multiple wheelchair swings, which consist of a platform onto which a wheelchair can be loaded from the ground. Like some existing Waco playgrounds, it would also have “adaptive swings” which are suspended plastic seats that are available to all children.
Other equipment could provide exercise and sensory experiences for children with a wide range of disabilities. For example, some inclusive playgrounds have slides designed not to create static electricity so children with cochlear implants can use them. And she said a bathroom with an adult-size changing table is important, especially for those users who have to wear a diaper.
Jones said Woodway’s Whitehall Park is the only Waco-area park with a wheelchair swing. She often takes Jaylon to Rotary Park in Temple, which has other equipment he can use, but she prefers to go all the way to Round Rock, which has an inclusive park where all five of her kids can play.
“Cameron Park is fantastic, but my son has never seen it,” she told the council.
Over the years, Jones has become part of a close-knit group of parents of special needs children, and she co-founded No Limitations, a new group that helps those children play sports and go to prom.
Her own son, Jaylon, has been going to physical therapy for 11 of his 14 years, which has made him strong enough to walk most of the time. He also plays Challenger baseball, which is designed for children with various disabilities.
He was 3 when he got the diagnosis of Costello syndrome, a recently discovered disorder known to exist in only 400 people worldwide, Jones said.
The condition affects multiple organs and systems in the body and causes both physical and mental delays. At 14, Jaylon weighs only 65 pounds and functions academically on a lower elementary level, his mom said. But he has a sociable personality that has allowed him to make friends.
“I’m very lucky in that he goes to Lake Air Montessori,” she said. “They’re so big on inclusion. The staff is amazing, and he’s exposed to typical students. Jaylon was even invited to the middle school dance. They don’t see Jaylon as different.”
Jaylon has had 38 surgeries in his short life. So far he hasn’t had any issues with cancer, which is common with Costello syndrome, but Jones said she doesn’t take anything for granted.
“With Jaylon’s condition, I know I may not have him as long as I’d like to,” she said. “So I’m going to do everything I can to make sure he has every great experience that life has to offer. People may think it’s just a park. But think about what a big deal it is to be able to go down a slide for the first time or swing for the first time.”
And she said having an inclusive park allows Jaylon to socialize with family members and friends who aren’t disabled.
“The more a so-called normal child is exposed to special-needs children, the less odd it is to them,” she said. “Those are friendships that wouldn’t form is they’re not given the opportunity to interact.”
Meanwhile, Pepper Jones has found a community of other special-needs families through No Limitations and through Elite Therapy Center, where Jaylon gets occupational therapy. The owner of the center, Kari McKown, has even invited Jaylon to walk her down the aisle at her upcoming wedding.
During a visit to the therapy center this week, Jaylon demonstrated his favorite equipment: A zipline.
Harnessed in and holding on to a bar, he cruised down about 30 feet of cable before crashing backwards into a hard foam pad. After a moment of concern from the adults, he broke into a laugh.
Jaylon’s visits to the therapy center have been reduced because of Texas Legislature’s decision to cut Medicaid services to disabled children. Jones said it’s more important than ever to have a place to play outside so he won’t lose the gains he’s made.
“We’re pretty fortunate that after 11 years we’re as mobile as we are,” she said. “But he still fluctuates. On any day, I don’t know if I’m going to get happy, mobile, good-mood Jaylon, or tired, very dependent Jaylon.”