Grace Church offers a special time for some special kids — and their parents

One by one, they popped through the doorway, some smiling like a rock star. It was their night.

An emcee next to the door greeted them, looping Hawaiian leis around their necks as she announced their names to a room full of people.

“I need a buddy for Casey Hilton,” she called out to the crowd.

Volunteer Bryana Haugen served as announcer last month at Grace Church in Overland Park for an evening of supervised fun for children with special needs, giving parents and caretakers from around the metro area a much-needed night off. More than 120 people, mostly children but some adults, partnered with their assigned buddies as Haugen announced them into the church’s multipurpose room, the first stop for the night’s festivities.

In the church lobby, another kind of excitement was brewing as parents registered and dropped off their children before heading out for the night. It’s been a long time coming, having a few precious hours to call their own. Tammie and Mark Taylor of Kansas City took two of their children to the respite night on May 8.

“It’s a chance for us to take a breather,” Tammie Taylor said. “We have three special needs kids.”

The respite night in May was just one program offered by a growing ministry of Grace Church called SOAR — Special Opportunities, Abilities and Relationships — started by a former physician who knows first-hand what families of special needs children go through.

Stephen “Doc” Hunsley of Overland Park founded the program in 2011 with three families at the urging of the church’s leadership. Now his ministry offers a monthly family support group, summer day camp, and buddies for Sunday school, youth programs on weekends and the respite nights for caregivers and for siblings.

Four years later, the ministry has grown to serve nearly 400 families throughout the metro area — and beyond as Hunsley works with other churches throughout the country to help them offer similar ministries.

“It tells me there is a huge need for it,” Hunsley said. “We are only scratching the surface. More churches and organizations need to do this.”

The free program is open to any family who has a child with special needs. For many parents, respite night is their only night out as just a couple. They are often sleep-deprived with children who wake through the night and have seizures on a moment’s notice. Their children’s meltdowns, tantrums times three, come unannounced and garner stares.

Families travel from as far west as Manhattan, Kan., and as far south as Fort Scott, Kan. A Northland family who has an autistic son never misses respite night, Hunsley said. Mom, pastor of a church, cares for members of her congregation, but it is difficult for her to ask for help, he said.

“She rarely gets a break,” Hunsley said. “It strengthens and energizes their marriage.”

Hunsley was honored last month as one of 20 Kindest Kansas Citians for his work. “Kindness is the essence of a man named Stephen ‘Doc’ Hunsley,” Blue Valley Southwest High student and SOAR volunteer Cassidy Winsor wrote in nominating him. “... Many marriages have been saved, many volunteers’ lives have changed, and many kids have gone home feeling like superheroes due to this incredible evening.”

It was a huge honor, Hunsley said, but he hoped it would shine a light on SOAR, the program he says is a way of life for him.

“I don’t do any of the things I do for me,” he said. “I do it for our families.”

Two life-changing events put Hunsley’s life on a course of service for families of special needs children.

Until a decade ago, he was an emergency room pediatrician. He caught contagious diseases from his young patients and nearly died several times. Rheumatic fever attacked his heart and left him with 40 percent lung function. He quit his practice and is on long-term disability.

He became a full-time stay-at-home dad with his three children for several years.

His son Mark had autism and a seizure disorder. In 2010, Mark died at the age of 5, leaving behind a lifetime of memories and lessons.

“God has allowed my family to go through what we had with a child with special needs,” he said. “We can now minister to other families who have gone through losing a child.”

After Hunsley’s son died, the family left their church, where he had been the children’s pastor. They landed at Grace Church in 2011.

After settling in, he told the senior and children’s pastors he was interested in volunteering in any way they saw fit. Two months later they asked him to head up a special needs ministry.

The first buddies were born when Hunsley assigned them to three families at the church with children with special needs. It allowed their children to safely attend and connect in Sunday school classes while their parents worshipped, Hunsley said.

Hunsley can relate to the parents whose children don’t sleep, seize without warning and whose meltdowns leave carnage of small hurricanes. He wraps his arms around them, mourns their losses and educates others in the community on special needs.

SOAR’s impact under Hunsley’s leadership has been huge, said Tim Howey, senior pastor at Grace Church. Marriages have been restored and families have reconnected. Families who are often underserved receive love, hope and acceptance, he said. Churches and special needs organizations locally and nationally learn about SOAR and call Hunsley to consult, he said.

“It’s been huge on an individual level and community level,” Howey said. “Doc’s story is so relatable to people who have loved ones with special needs. They know they are not talking to someone who learned these principles through a classroom.”

SOAR respite nights, held every other month on Fridays from 6 to 9 p.m., have a carnival flair. May’s theme was Hawaiian night. Superhero was a hit earlier this spring. Music blasts as buddies greet their assigned individuals, announced over a speaker, high-fiving and fist-bumping them into a large multipurpose room. Some get silent “sensory cheers.”

Upbeat volunteers are everywhere, supervising activities, acting as security, setting up and tearing down activity rooms, giving medical care and passing out nametags. It took more than 300 for the May 8 event. Fifty-five percent of the volunteers do not attend Grace Church.

“It’s a great program,” says 15-year-old buddy Cameron Cowen of Overland Park, whose mother, Pam, also volunteers. “It’s great to see how the kids are having fun. Helping one kid can make a difference. It’s really a good way to give back to the community, also knowing they are having fun.”

Respite nights are a family affair. Having a child with special needs such as autism or a genetic disorder such as Down syndrome impacts the entire family, Hunsley said.

Everyone needs a break, including siblings, he said. That’s why the respite night includes a sibling program that runs simultaneously. The SOAR special needs program is held at Grace Church at 8500 W. 159th St., while the sibling program takes place at nearby Redeemer Presbyterian Church at 9333 W. 159th St. Infants are cared for in the nursery at Grace.

“Anyone interested in benefiting families with special needs has been reaching out,” said Chris Bantham, coordinator of the sibling program. “We have very qualified people showing up.”

The focus is to be a blessing to the families and the kids who are there that night, said volunteer buddy Emily Stevens, 25. Stevens, of Overland Park and a member of Grace Church, is also a substitute buddy in the church’s Sunday school SOAR program.

“Over the years a lot of different emotions have gone through my head and my heart,” Stevens said. “It’s an eye-opener to me and to my heart seeing these children through the parents’ eye and what the parents go through every day. It’s also very rewarding.”

Participants are made to feel welcome at the respite events from the moment they step in, said Holly Palacio of Olathe. Two of her children attend the sibling night while her son, Michael, 8, is paired up in the special needs program.

Hunsley matches all of the volunteer buddies to children with special needs, based on their age and experience. Special needs children with a less complex diagnosis are paired with teens. Those who are medically fragile are partnered with medical professionals such as nurses, physicians or special education teachers. Everyone receives training and background checks.

“The kids’ safety is there, and the fun factor is through the roof,” Palacio said.

After everyone finishes a pizza dinner at the special needs program, the multipurpose room transforms into a gymnasium to shoot hoops or play dodge ball. Tables in classrooms are shoved aside and rooms are converted for play.

This is a night where the partici- pants rule. Children with special needs are generally told what to do, Hunsley said. But on respite night, they are encouraged to lead the way, buddies following their whims. Participants choose their activities and how long they will do each one.

The rooms are supervised with hands-on activities designed for a variety of special needs. Participants can make creations in a craft room, take in a film, create shaving sculptures in a wet sensory room, swing in the dry sensory room, chill in a quiet room, duck under a limbo pole and ride trains from room to room. Children dart from room to room for three hours.

“Isn’t this just amazing?” said Dawn Fox of Overland Park. “It’s exciting. There’s something for all the kids — so many options for so many kids.”

Fox was a buddy for her son, Josiah. Josiah’s panic attacks are so extreme he cannot participate without her, she said. The 8-year-old scored point after point in electronic basketball, saying it was fun. He shot ping pongs into buckets in another room, then bent backwards in the limbo dance. Fox sees a time when Josiah can attend without her as his buddy.

“I would find my husband and go to dinner,” she said. “I would just have time with my husband.”

Hunsley is usually at every respite night, running and overseeing the entire night. He loves talking to the families and hearing their stories.

“I love these nights. I love these families, being able to bless them,” Hunsley said. “I think we are having an amazing impact.”

The sibling program, a half mile west of Grace Church, filled with 65 siblings from 5 to 13 years old on May’s respite night. Volunteers were on hand for crafts, games, sports and a movie. Dodgeball, relays, soccer, basketball and volleyball were popular activities for the night, with volunteer dads hamming it up in scooter relays.

Paul Etheridge, 11, attended the sibling program while his brother went to Grace. Paul enjoys the laid-back atmosphere at sibling night. His favorite activity was the inflatable castle.

“Everybody is friendly here,” Paul said.

Hunsley sees how his respite ministry impacts families.

One parent phoned Hunsley after a respite night saying he decided to postpone the divorce papers he had planned to sign that morning. He told Hunsley it was the first time in 11 years that he and his wife had dinner alone. He realized he still loved her, he told Hunsley. They just needed time together. Hunsley said three years later the couple is still married, still attending respite nights.

It is not an uncommon scenario among parents of children with special needs, Hunsley said, citing high divorce rates among parents with children with special needs.

“It’s exhausting. You can’t just go get the neighbor girl,” Hunsley said. “As a result people don’t get to go out on dates. The stress is just enormous. That’s why I want to do these nights — to give these parents a night where they can get some relief.”

Joni Pless of Kansas City is widowed with two children, one with Down syndrome. Pless moved from Arizona to Kansas City three years ago after her husband died. It was a stressful, painful time in her life. Pless started participating in respite nights at Grace as soon as she learned about it. The program was heaven sent, she said. She attends the monthly support group meetings as often as she can.

“I was so stressed,” she said. “It was much-needed. Sometimes I just went home to be in the quiet.”

Many families who have children with special needs do not attend church on Sundays due to logistics and behavior issues, Hunsley said. It becomes one more thing families cannot do together. One family drives from Liberty every Sunday to worship at Grace, he said. Their twins, who both have autism, are assigned buddies to accompany them in Sunday school classes.

“They are excited to go to a church that is able to take care of their boys,” Hunsley said. “Mom and Dad are able to go to worship.”

Another family travels three hours from a small Missouri town near the Iowa border. They see respite nights as a six-hour break. The parents quit work on Friday afternoons to make the trip. After three hours of dinner and a movie, they return to their exhausted children who fall asleep as the engine starts.

Part of SOAR’s mission is to equip other churches and organizations with special needs ministries to help with families in desperate need of support.

There’s such a need for rest and respite, and families with children with special needs can’t get it anywhere else, Hunsley said. To change the paradigm, Hunsley helps other churches and organizations develop special needs programs. In 2014, he started Kansas City Special Needs Ministry Network to collaborate with area churches. There are 40 in the group. In the past 18 months, four churches in the network launched special needs ministries and five started a respite night. He also works with 45 churches across the country to start up special needs ministries. Churches and other nonprofits frequently observe SOAR programs.

“I share everything I have. Everything I do I share with them,” he said. “I want them to succeed and not struggle without knowing what to do.”

Seventeen percent of kids nationwide have special needs, Hunsley said. Just about everyone knows someone with special needs, he said.

“I want everyone in this country to not give them a second thought, not pity them,” he said. “They can be loved and are vital to our community. They need to be reached out to. Anybody can do it.”

Julie and John Wegeleben of Peculiar use the SOAR respite nights. They get dinner out and their son has fun, she said. Hunsley’s efforts made it possible for them to attend their church in Peculiar where he helped start a buddy program for Sunday school, Julie Wegeleben said.

“It’s been huge. Doc has been very helpful,” she said. “He helped get the ball rolling. It’s growing rapidly. He has trained a lot of our staff on special needs.”

Eric Ruth of Overland Park says Hunsley has helped him through tough times. He and his wife, Trisha, have three children with special needs and facilitate SOAR’s family support group. Hunsley has a heart for SOAR, he said.

“If I am struggling with something, I call Doc,” Eric Ruth said. “Doc is a fun spirit. He just has fun doing whatever he’s going to do. Super compassionate, tender-hearted and he is just really supportive of everybody. That would be Doc in a nutshell.”

This story was originally published June 2, 2015 at 6:25 PM.