Community partners help church fill special needs
|Manny Carter, 5, center, gets into a Drum Magic interactive performance at an event organized by the Special Connections ministry at St. James UMC, Tampa. Photo by Susan Green. Click here for more photos.|
TAMPA – The first blow came when Sally DePalma heard the diagnosis: Her then 2-year-old daughter, Leah, was autistic.
The second came when DePalma sought comfort and refuge with her family at church and discovered that, even there, life would never be the same. At the request of attendants, she ended up sitting in the infant cry room with her toddler while the rest of the family remained in the worship service.
"This was just like salt in the wound," DePalma recalled. "Your life has already been changed, and now this is like a physical representation of that."
"I thought, 'Now that's the antithesis of what church should be about,'" she said. "This is not what Christ would want."
Twelve years later, bolstered by personal knowledge of the challenges faced by special needs children and their parents, she heads up Special Connections, a bustling ministry at St. James UMC, Tampa.
The ministry regularly serves more than 100 children and adults with disabilities – nearly half of them autistic -- offering various programs to meet the diverse needs of people with different challenges, as well as their families.
|Sally DePalma will help lead a workshop titled "Making Camp Work for Persons with Autism Spectrum" with Lynn Swedburg, a consultant to the United Methodist Committee on Disability Ministries, at the upcoming National Camp and Retreat Leaders Gathering. The event will be held Jan. 28 to Feb. 1 at Warren Willis Camp and the Life Enrichment Center in Fruitland Park.|
DePalma predicts there will be a growing need for ministries like Special Connections, as more and more children are being diagnosed with autism and more preterm newborns survive with advanced medical intervention but remain at risk for a host of disabilities.
In the past six years since Special Connections gained traction, DePalma has cultivated a relationship with faculty members from the nearby University of South Florida that brings students from such specialized programs as communications disorders, social work and physical therapy to the church campus for community service and sometimes class credit projects.
The students get experience working with a disabled population. Some conduct research that can lead to enhanced quality of life for those who need special care and their caregivers. Some discover that they're not cut out for hands-on work with the disabled.
That's OK, DePalma said.
"This is not the prettiest ministry," she said. "It's not for everyone. But I think it's one of the most profound."
Some of the people the ministry serves have trouble with everyday lights or sounds or difficulty communicating or picking up on social cues, such as when to be quiet. Others get around in wheelchairs, have limited control over their movements or don't hear well.
It is not at all uncommon for each Special Connections participant to depend on one or more volunteers to get through a worship service or group activity, DePalma said.
|Richie Guzman, 6, checks out a petting zoo at a FriendZone respite care event organized by St. James UMC's Special Connections ministry. Photo by Susan Green.|
She said she has been blessed with dedicated and patient volunteers who belong to the church and help her run such ministries as respite care and special worship gatherings and outings, as well as providing support for families who want to integrate their special needs member in a regular worship service.
Recently, a USF student project produced a chart of pictures that people with speech difficulties can use to communicate their wants and needs by pointing. Another project led to sensory stimulation equipment made from everyday items that can potentially save parents or caregivers thousands of dollars.
Leigh White and Julie McGary are among USF graduate students who have been working with special needs children at St. James and Palma Ceia UMC, Tampa. At a respite care event in December intended to give parents holiday shopping time, the young women set up "a relaxation room" for over-stimulated youngsters using black lights, a bead curtain, a nylon tent, and other items that substituted for more expensive gadgets marketed to families of special needs children.
A few strands of Christmas lights, for example, took the place of more expensive fiber-optic lighting kits that can cost $500 to $600 each.
|Sally DePalma, director of Special Connections at St. James UMC, talks about a USF student project that shows parents of children with sensory processing disorders how they can effectively substitute everyday items for high-priced therapeutic gadgets. Photo by Susan Green.|
The students said a similar room with toys and products specifically designed for people with sensory processing challenges would cost about $70,000, well beyond the budget of most special-needs families.
White said developing the project meant spending time with those who would benefit in order to determine the best ways to help.
"I think for me, it gave me experience with this population," she said. "It was overwhelming at first, but when you get into it, it's awesome."
Lindsay Fried, another USF student, said she jumped at the chance to work with people like those she expects to build her career around.
"This isn't school," she said. "It's real life."
DePalma said she joined St. James years before Special Connections was up and running. She said she struggled for years to attract special needs families to worship services, but the ministry really took off when the church began offering respite care, dubbed "FriendZone," a desperately needed service that gives caregivers a break to take care of errands or personal business.
|Ethan Gonzalez, 8, center, works on coordination skills with Special Connections volunteers at St. James UMC, Tampa. Photo by Susan Green.|
People began coming back to worship. Rev. Steve Ezra, senior pastor, said newcomers sometimes visit because they like the church's efforts to include everyone.
"It has attracted so much community attention," he said. "It's a witness, really."
Some special-needs teenagers have been confirmed and baptized, demonstrating their ability to know and accept Christ as the Savior, he added.
"It's always a two-way street," Ezra said. "The students have real faith in Jesus Christ. You learn from them.They're ministering to me, and I'm ministering to them."
DePalma said she tried seeking solace through secular support groups when her daughter was younger.
"The people there just didn't have hope," she recalled. "I needed a place to vent but at the same time, I needed an upswing."
She believes the church is the obvious answer to the growing demand for special-needs services.
"I feel it's an honor that God has put me in this place," she said. "I can walk the line as a leader but also as a parent."
One of her most gratifying moments came when a young volunteer summed up his FriendZone experience.
"He said, 'When I came in here at 9 o'clock, I saw kids with disabilities. When I left at 1 [p.m.], I just saw kids.' It really takes down the barriers."
|The Centers for Disease Control estimates 1 in 88 children in the U.S. have some kind of autism spectrum disorder, an increase of 78 percent over estimates of five years ago.|
* Susan Green is the editor of the Florida Conference Connection.