Caring for a child with special needs can be a 24-hour-a-day gig, with limited downtime to take care of family matters, catch a movie or just chill out on the sofa. Yet you desperately need a break to rest, relieve stress and get re-energized, says Laura Warren, executive director for Texas Parent to Parent, a statewide program that provides support, information and education for families of children with disabilities, chronic illness and special health care needs.
“Respite care—help caring for a child with disabilities or special health care needs—is something that every parent asks for, but few get,” says Warren, who has been involved in parent support for 22 years. “Many children with disabilities don’t sleep more than a few hours at a time; [and you as a parent] make choices between getting chores done or taking a shower or sleeping while your child is sleeping. There is no good choice in that scenario.”
Unlike families of typical children, who can hire a neighborhood teenager to baby-sit when they need a night out, respite care requires someone with specialized skills to cover your child’s needs, explains Warren. Respite can be provided by trained family members in the home or by professional respite workers in or outside the home. Although it is one of the most often-requested services from parents of children with disabilities, it is the least one provided.
“Very few agencies do respite care; some provide funding for respite, but not respite workers,” explains Warren. “Many families cannot find respite or attendant care workers because of where they live. Some families cannot even get their extended families to help care for their child with pay, so they have no options for respite care.”
At wits’ end no more
Before she found in-home respite care about three years ago for her daughter Kiana, now 13, Schandrilla Schlesinger faced an agonizing decision. Each day, the single mom of four would wake up at 5am to care for Kiana, who has cerebral palsy and epilepsy, and her three younger siblings. Schlesinger was utterly exhausted and stressed beyond her limits.
“Usually within two hours after dropping Kiana at daycare, I’d get a phone call saying the paramedics were there, because she’d had a seizure and gone into respiratory depression,” recalls Schlesinger. “I’d leave work and meet Kiana at the hospital. I lost numerous jobs, and after looking for respite care for nearly seven years, I was on the verge of giving up. At one point, I was considering giving up custody of Kiana and making her a ward of the state (so she could get proper help).”
Schlesinger’s friend suggested she ask her pediatrician to refer her to Dallas Metrocare Services. After being evaluated, Kiana’s condition qualified her for a trained caregiver for about 200 hours a year.
“It was such a blessing. I could choose to have in-home services, or have someone take Kiana to different activities, just to give me a break,” says Schlesinger. “Then I found out that I could have a family member get an income to care for her, so my mother got training. She lives with us now, and it’s just so awesome.”
In-home or out?
Warren notes it’s important to choose the right respite program for your family’s needs. “If you want to be at home to relax, then you want to take your child to a center. If your child doesn’t do well in strange places, then you might want a home-based program. If your relaxation is shopping, then either type would work,” she says.
Respite care programs not only provide a much-needed break for the caregivers of a child with special needs, they also enable the children to enjoy themselves among friends. Many children with disabilities are cared for at home and might feel socially isolated. Programs that also accept siblings of children with special needs are a great place for kids to meet friends who ‘get’ them, says Carol Brady, director of Friday NITE (Nursing Interventions in a Tender Environment) Friends. Established in 1992 for medically fragile children by Linda Guerrero in memory of her daughter Rory, FNF runs at Custer Road United Methodist Church in Plano, and now includes children with autism and Down syndrome.
“The kids love it and don’t want to leave,” says Brady.
Jan Marshall, a pediatric home health nurse, has worked at FNF for five years. “I feel so honored that these parents trust me with their precious children,” she says. “We take them on walks, watch videos, read or play. The most rewarding part is giving siblings [of those with special needs] a place to interact with somebody who knows how they feel. I love these kids and it’s great to give their caregivers a break.”
Like-minded friends
Many parents whose children attend respite care programs forge lasting friendships, like Michelle Gulley and Joan Seeley, who met at the Rays of Light respite care program, Night Lights. It currently serves 75 children and operates out of Lovers Lane United Methodist Church in Dallas. The program also accepts siblings, and offers arts and crafts, computer games, shows, gym time and more.
Gulley and Seeley joined seven years ago, when their sons James and Josh—both of whom have Down syndrome—were just 6 months old. Since then, both families have dropped off their children at Rays of Light on the first Friday of each month, and often double date while their kids play together.
“Night Lights has been amazing for our entire family,” says Gulley, a mom of three. “James is really high-functioning in many ways, but he lacks judgment, so it’s really hard to find someone to care for all three of my children at the same time. Even family will only take my two typical children, or just James, never all three at the same time. At Night Lights, they’ve all made tons of friends, other kids that have siblings with special needs, which is fabulous for them.”
Seeley, a mom of three notes that, “Night Lights gives us all chance to have a night out. I believe that our marriage is the most important thing, and if we can set a good example for our kids, they’ll feel secure. Every Friday, my kids ask, ‘Is it Night Lights tonight?’”
Finding childcare for children with special needs is a huge challenge, agrees Reverend Kay Lancaster, associate pastor of spiritual formation at the First United Methodist Church in Arlington. Its monthly respite program, First Fridays, currently serves 25 families from September to May, and has been running for 10 years.
“By providing free childcare for the special needs child and siblings, we’re able to give these parents the gift of three hours to have a date, go to the grocery store, or just take a nap,” she says. “We’ve had some of our parents tell us that First Fridays has literally saved their relationship, since this is the only time they have to connect.”
The program offers music, arts and crafts, gym activities, and a movie during the three hours, adds Lancaster, “but mostly, we offer love and peace of mind.”
Revive, the special needs respite program at NorthWood Church in Keller, was born out of sheer necessity, notes children’s pastor Becky Done.
“We had several families with children with special needs attending our church, and we had to figure out how to minister to them effectively and lovingly,” she recalls. “(These parents) had experienced difficulty finding a church home where they could leave their child and know that they were welcomed and well cared for.”
Run by Diana Kerby, Revive takes place two Friday evenings each month, and features crafts, playground activities, computer games, music, and board games.
“We also host various other events for families with special needs kids through camps, Easter egg hunts, and the Revive Carnival,” adds Done.
In addition, these programs also help you connect with others. “Meeting other parents who deal with similar challenges has been a huge relief,” Seeley says. “Going to the grocery store, I don’t often see other kids with Down syndrome, but at [my child’s respite care program], you see lots of kids with Down syndrome. It’s refreshing to have that ‘you’re not alone’ feeling.”
