be.well Opens World of Possibilities for Kids with Developmental Disabilities

Encouraging kids to push the boundaries is the goal of this hospital/community program.

It all started seven years ago with one kid—a high school student with cerebral palsy who was struggling to complete physical education testing. He was supposed to run a mile, but every time he attempted it, he threw up. Determined to get beyond this limitation, he talked to Jen Angeli, PhD, the physical therapist at Cincinnati Children’s with whom he’d been working for a long time.

Angeli, who loved running, agreed to help, so she began meeting with him at Lunken Airfield, where they practiced running around the trail and building up his stamina.

“His goal was to do a 1-mile pacer test,” said Angeli. “But eventually, he worked his way up to running 5 kilometers. He entered a 5K race, and the rest, as they say, is history.”

That experience made Angeli think. “If I could help one kid, I could help more.” And the be.well program at Cincinnati Children’s was born.

The be.well program provides community-based wellness services for kids with special needs. Central to its success is creating a safe space where participants can play among similarly abled peers, try new skills and build confidence.

“There are clear national guidelines for how much people should move every day to stay healthy,” said Angeli. “Generally, no one is meeting them. Individuals who have disabilities are particularly vulnerable, and since these are the people we’re serving, the idea is that, if we can help them be more active, they will benefit both physically and mentally.”

Knowing she couldn’t do it alone, Angeli enlisted the help of staff, volunteers and community partners to be co-leaders and program champions. Initially, they expanded to helping seven kids with running, then 14 kids. Eventually, they added biking, rock climbing, yoga, gardening, hiking, martial arts and an adapted sports exploration series to the program.

“We weren’t out to reinvent the wheel,” said Angeli. “Our community partners already offer these great opportunities for kids. We just helped them modify what they do to work for kids with physical and developmental disabilities.”

Fleet Feet is one of those community partners that offers training programs for runners. Angeli and her team trained and guided their coaches to succeed with a different population of kids.

This year, the Cincinnati Parks Foundation joined in to support be.well programs.

“They’ve helped our kids understand that parks can be accessible, and our hiking program gives them a reason to explore,” said Angeli. “After they’ve been to a park with us once, the kids feel comfortable in that space, and they’re more willing to return.”

The hiking program also involves Luke 5 Adventures, a local not-for-profit ministry that provides all-terrain cycles for kids with significant mobility challenges. “Kids who use gait trainers or wheelchairs have trouble getting deep into trails,” said Angeli. “Luke 5 puts them into their equipment and provides volunteers to help get them into creek beds so they can experience adventures just like other kids.”

Meanwhile, last May, be.well introduced a gardening program with Gorman Heritage Farms designed to help kids with sensory defensiveness explore and grow different kinds of plants over an 8-week period during the summer.

Pandemic Complications

The arrival of the COVID-19 pandemic in March forced be.well into a digital pivot to keep the kids safe. While it has limited some aspects of the program, it’s offered new opportunities.

“We’re doing our best to maintain social interactivity by creating Zoom spaces,” said Angeli. “For the gardeners, we call it Zoom Blooms; for hiking, it’s Trail Tails. The half-hour weekly sessions allow the kids to see each other, talk about their adventures and practice interpersonal skills.”

Therapists, physicians, university students and other volunteers serve as virtual supporters, with each one assigned to check in on a child weekly—via online chats, email or snail mail—to make sure they’re keeping up with “homework,” i.e., hiking or watering their plants.

The latest be.well offering is called Groove—a music and dance program in collaboration with Pones, a creative dance company, and Nick Rose, a local musician.

Each Monday participants receive a newsletter with a link to a video that contains a music and dance lesson. The kids practice what they’ve learned so they can join in on the performance during their weekly Zoom video.

“It’s a lot of kids making a lot of noise and moving their bodies,” said Angeli. “Our community partners tell us it’s the best dance party ever.”

Unexpected Benefits

Going virtual has provided unforeseen advantages. It eliminates or makes some of the barriers to the program more manageable.

“For kids who are sensory averse and have trouble with high levels of stimulation, an online experience is easier because there’s less noise and commotion,” said Angeli. “For our hiking program, we may normally meet at a park where there is a gravel parking lot or curbs, but with a virtual program, the children can hike where it’s more convenient for them.”

Virtual programs can be conducted anywhere, which extends their reach to those outside our region.

“We’ve had some participants from the Ronald McDonald House, and it’s nice to know that, after they go home, they can still take part online,” said Angeli. “Right now, in our Groove program, we have a child enrolled who is from Nebraska.”

The be.well program was designed to be as inclusive and barrier-free as possible. There are no age or ability requirements and no charge for services, thanks to the generosity of the Convalescent Hospital's Association of Volunteers, which has supported OT/PT initiatives for years. They have paid all the costs for instructors, coaches, studio fees, running gear, etc., so no one is excluded from participating.

Said Gillian Marksberry, whose daughter Ella has been a program member since 2017, “As a special needs parent, I have found it difficult to connect Ella with opportunities for socialization, as most community and school activities are geared toward ‘typical’ kids. The be.well program has provided us with adapted activities so that Ella can enjoy many of the same activities as that of her peers. Through be.well, Ella has been able to ski at Perfect North, play ice hockey, play basketball, football, baseball, garden, etc. Ella thoroughly enjoys herself, and it has also been nice to meet many other parents who share a commonality with me.”

Last year, be.well had 250 participants, but this year it’s on track to surpass that with 80 kids enrolled in the hiking course alone.

“I love many things about Cincinnati Children’s,” said Angeli, “but I love the opportunity to build a program like be.well most of all. Being able to put kids back into the community and empower them in ways that help them feel at home there makes me and all the team want to do it again and again.”

To be notified about be.well programs, text the word "bewell" to 66866, or contact otpt.be.well@chmc.org.

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