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Spring 2001 Table of Contents
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A Time to Embrace 
Parents of Special-Needs Children Find Respite in Night-Out Programs

By Laurie Fox / The Dallas Morning News Reporter

02/24/2001 - The Dallas Morning News - Reprinted with permission

Editor's note: This article originally appeared in The Dallas Morning News. By going to their website at this link, Ministries for the Disabled, http://www.dallasnews.com/extra/292656_q_disabled_24rel.html you will find links to other resources such as the National Organization on Disability - Religion and Disability Program http://www.nod.org/acctallies.html and Joni and Friends http://www.joniandfriends.org/. Their address is P.O. Box 3333, Agoura Hills, CA 91376; phone: (818) 707-5664.

As 8-year-old Sam Beller smiles, his blue eyes turn into crinkled slits and his eyebrows seem to dance on his forehead. He can't move much of the rest of his body, but a jaunty turn of the head or a gleeful gurgle can say a lot.

"You can tell by the sounds that he makes and his expressions what he's thinking," said Elizabeth Laird, a vocational nurse who spends her Friday nights caring for medically fragile and special needs children like Sam.

Sam, who has cerebral palsy and severe scoliosis, is a delight to almost everyone who meets him. He's also a lot of work. Every few weeks, his parents get some free help from Friday NITE Friends, an outreach ministry of Custer Road United Methodist Church in Plano. The parents' night out program for special needs kids is rare because it also takes in the children's well siblings. More than 80 families from throughout the area take part in the weekly, four-hour program, which is staffed by vocational and registered nurses as well as volunteers.

Three other local churches - Arapaho Road Baptist Church in Garland, First United Methodist Church in Denton and Highland Park United Methodist Church in Dallas - have started efforts, giving the area an unusually high number of programs that care for all the children in a family, regardless of whether they are disabled. The programs are all free and families do not have to be members of the congregation. And they are flourishing at a time when advocates are pressing places of worship to move beyond accommodating people with disabilities to welcoming and valuing them.

"A full life of faith is more than worship," said Ginny Thornburgh, director of the Religion and Disability Program of the National Organization on Disability in Washington, D.C. "Children and adults with disabilities have gifts and talents to bring to their congregations. The most important accommodation we can offer them is the gift of friendship."

The parents and workers at Friday NITE Friends agree. (NITE stands for Nursing Interventions in a Caring Environment). "There's a premium that you pay when you have a special needs child," said Kyla Prestwood, Friday NITE Friends director, who has a 17-year-old multiply handicapped daughter. "Time is the one thing that these parents need the most but they don't have. And for them to have an adult caregiver just take over for a little while is very expensive."

Ms. Prestwood tells tale after tale of initially hesitant parents who, when they finally admit that they need time away from their children, cry with relief. Some couples eat dinner and catch a movie. Others go shopping. They return home for a nap or, in the case of one mother, a bubble bath. The parents take a pager with them when they leave Custer Road at 6 p.m. and can call to check in. Most return before the 10 p.m. pick-up time, but even a few hours can make a big difference.

"Uninterrupted time is a treasure," said Darla Andrews of Plano after dining at a restaurant with her husband, Van. The couple's twins, 7-year-old Tom and Will, are autistic. Will is mentally retarded and visually impaired. Their brother, Jim, 5, is speech-delayed. Sister Katie, 9, is in an accelerated classroom at school and has no disabilities.

"We don't know normal in our house," Ms. Andrews said. "Friday NITE Friends is a real break for us. It's really hard to put your faith in people to be able to leave your kids for a long period of time, but we have to. I hear horror stories of parents breaking up when they have all of these challenges."

"Parents of special needs children can become very isolated and the stress can become overwhelming," said Ms. Thornburgh, who helped launch a national effort to make churches more accessible to people with disabilities. "These types of programs allow parents and their children to get to know one another and their families," she said. "That network is very important."

The Rev. Mark Craig, pastor of Highland Park United Methodist Church, said the disabled community is under-served by churches. "These are the parents who aren't in church anymore because they just can't get away," said Mr. Craig, who also was the pastor of Custer Road United Methodist Church for 15 years. "What these churches are doing for these parents doesn't even come close to filling the need. If the churches don't do it, who will?"

Melanie Lucido's son, Joseph, is 18 months old but functions as a newborn because of hearing and visual impairments and severe motor delay. He suffers seizures and needs help sitting up and rolling over. She began attending the Night Owls program at Highland Park United Methodist Church, held the third Friday of every month, after she realized that she and her husband, Michael, needed time away but couldn't afford it on their own.

"The last year and a half has been unbelievably stressful," she said. "This gives our whole family a break. Our older son was able to be around others with special needs. It just seemed normal to him."

Hilary Nelson coordinates the King's Kids special needs ministry at Arapaho Road Baptist Church. She said the 2-year-old program, which includes a Sunday evening program, Sunday school and an adult special needs class, expanded into a Saturday evening parents' night out program last year.

"For our church, it's really opened people's eyes and makes them more aware and comfortable with the disabled," she said. "The parents involved, a lot of them haven't had the time just to spend alone in so long they've forgotten how."

Mr. Craig said many churches don't start such efforts because they don't see the need or they fear the expense of nurses and medical equipment. But, he said, with a congregation's support, they pay for themselves.

At Custer Road, the Thanksgiving service gives the Friday NITE Friends group an opportunity to speak to the congregation and remind church members about those they're helping. The collection from those services helps fund the group. The program costs about $50,000 a year, and all the money comes from donations.

"People think about this ministry and really count their blessings," said Carol Brady, a Friday NITE Friends coordinator at Custer Road. "Just helping these families makes you feel good."

Organizers at Custer Road say they plan to start training other churches to launch similar programs. The church provided guidance and seed money to help First United Methodist Church in Denton get its weekly program, Friday's Kids, off the ground.

"They [Custer Road] are inspiring other churches," said Rhonda Clark, the program's director. "Six years ago, there was only one program of this nature [in Texas], and now they're cropping up locally and throughout the country."

When Sam's father, David Beller, arrives to pick him up at Custer Road, Sam grins and hums. Mr. Beller talks quietly with the nurses who have worked with him through the evening. The Bellers spent their evening away having dinner and shopping for tile flooring. They have to replace their carpet because of Sam's allergies.

"If we had to hire a nurse and a babysitter for four hours, it would cost us more than $100," Mr. Beller said, lifting Sam into his wheelchair. "Sam enjoys it here. We spend so much time taking care of his physical needs. He has social needs as well."

As the Bellers prepare to leave, Ms. Laird, the nurse, tidies up the playroom. "People will say to me, `This must be a depressing place,'" she said. "Are you kidding me? These kids fight [to get through] every day. They don't complain, and their parents don't either. It's inspiring."


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