Daily life for the Bryant family can feel chaotic. So getting a break — if only for a few hours — feels like a “life-saver.”
Amy Bryant, of Granite City, said doctors believed her daughter, Kacie, would never walk or talk. That was when Kacie was 6 months old. Today, she’s 7 years old and constantly on the move.
“There’s no sitting and relaxing,” Bryant said.
Bryant’s husband, Mike, said Kacie doesn’t really play with toys, but she likes people.
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“She’s always needing attention from someone until she goes to sleep at 8:30 or 8,” he said.
It was only last year that the Bryants learned that Kacie’s special needs stem from something called genome deletion of POU3F3. They think it affects Kacie’s central nervous system.
Kacie doesn’t talk, and she doesn’t feel pain unless it’s intense, which makes it hard for her parents to know when she’s hurt. Like recently, when the family learned that Kacie was sick.
Her brother, Brock, 4, complained that his ear was bothering him, Amy Bryant said. A doctor told them Brock had strep throat, which spreads easily, so they decided to have Kacie tested, too.
“She had it worse than him,” Amy Bryant said.
Kacie’s school, William BeDell Achievement and Resource Center in Wood River, offers one respite, or rest, day every year around Christmas. Parents can drop off their children who have special needs and run errands or have a break knowing the kids are in good hands.
But Amy Bryant said one break a year wasn’t enough.
“You can’t get a year’s worth of stuff done in three hours,” she said.
So the Bryants were excited to discover a local nonprofit that offers the same service but more frequently — once a month.
That nonprofit was founded by Melanie Stith, of Belleville. Stith knows being a parent to a child who has special needs can be isolating and challenging. Two of her three children have autism.
“Some days even after work, I don’t sit down until 8 o’clock, sometimes 9, because you have the therapies and you still have the human part of that piece where you have to be the mom,” Stith said. “After all of that, you still have to do your mom part.”
And sometimes she says she needs a break just to go to the grocery store or take a nap. But with the significant needs of her 10-year-old son Elisha, in particular, Stith needs someone with specific training to watch him.
Elisha is nonverbal, and he’s sensitive to the smells and noises around him — like the humming sound of fluorescent lights.
As Stith talked to other parents of children who have special needs, she discovered many of them had similar concerns. So she decided in 2015 to start a charity that gives parents a place to take their children where they will be cared for by people with experience, including Stith and other volunteers.
She calls it Elisha’s Cove.
One Saturday of every month is respite day. Parents drop off their children at The Journey-Metro East Church, 200 Dapron Drive in Belleville, and enjoy a four-hour break.
Just being a parent, it’s sort of like the burden that’s not a burden. It’s just part of your life. It’s just what you do.
Dominick Sylvester on respite services
Dominick Sylvester, of Fairview Heights, says that time feels like a “mini vacation.”
Sylvester is a caretaker for his son, who has autism. The 13-year-old’s name is also Dominick — “Nicky” for short.
It hadn’t occurred to Sylvester to seek out a service for parents, he said. He heard about Elisha’s Cove from a family friend.
“Just being a parent, it’s sort of like the burden that’s not a burden. It’s just part of your life. It’s just what you do. So actually stepping away from that’s just almost surreal in a way,” Sylvester said. “But it’s a really nice break. Helps you keep your sanity.”
Sylvester uses the respite days to do things like go to the store, grab a coffee or have lunch with his wife. He says it would be hard to take Nicky with him to do those things because children who have autism can get aggravated around other people.
“It could just be somebody sneezing across the room, and you wouldn’t think that would bother anyone else, but that would be like a big thunder crack to them,” he said.
The Bryants use their breaks to go on dates or clean their home. They used the break in December to finish their Christmas shopping.
“It’s a fresh breath,” Mike Bryant said, “just to be able to unwind for a few hours, just get away from the hectic side of our life.”
On top of that, Kacie loves going to the events.
“She gets excited when you pull up. You can tell,” Mike Bryant said. “Even though she doesn’t talk ... you can tell when she’s happy to be somewhere.”
Another reason Stith wanted to start the nonprofit is because she saw that Elisha wanted to go to things like after-school programs with his brother and sister.
“It didn’t bother him so much, but as he got older, he would try to get out the car with them and go with them,” Stith said.
Stith’s daughter Gabrielle, 11, struggles with social interactions because of autism, but she’s not as sensitive to her environment as Elisha.
Sylvester said Nicky likes spending time with Elisha, Gabrielle and the other children. Usually, Sylvester comes back about 30 minutes before respite days end “just to see him play with the other kids.”
“...That’s also pleasant to see them doing that,” he said.
During respite days, Stith said the children can play foosball or basketball, watch television or create things with Legos and through arts and crafts. They will walk to a nearby park when the weather allows, which is Nicky’s favorite part, Sylvester said.
Stith says the events aren’t structured; The kids decide what they want to do.
She gets excited when you pull up. You can tell.
Mike Bryant on his daughter’s reaction to Elisha’s Cove
The church where they meet for respite days isn’t involved in the nonprofit, Stith said, but “they have been a blessing.” She said that’s because finding a location is “the hardest part.”
“Eventually, we want to get to a place where we have our own space,” she said. But right now, Stith is paying for everything largely out of pocket. Parents are only asked to pay $5 for each respite day, which covers their child’s lunch.
“I’ve been covering the expenses myself. So as long as we have volunteers, which we have had quite a few, we can run a nonprofit,” she said.
Most of the volunteers are college students or professional therapists, Stith said, but she says anyone who is patient and empathetic can help.
Some of the children who come to respite days don’t have special needs, like the Bryant’s son Brock and Stith’s oldest son Antwan, 16. Stith thinks that’s important, too.
“... Typical children need to understand not just disabilities within your home, disabilities (of) other children,” she said. “I’ve learned so much since I started this nonprofit about other children who have genetic disorders, genetic depletions. ... I think that’s the important piece for kids who don’t have disabilities.”
Any family interested in bringing their child to a respite day should email Stith at firstname.lastname@example.org to receive a registration form.
Blessed to Give
The BND features a different charity every day from Thanksgiving to New Year’s Day. If you know a charity that should be featured, contact Lexi Cortes at email@example.com.
Elisha’s Cove offers respite, or rest, services for families of children who have special needs. From 10 a.m. to 2 p.m. one Saturday of each month, parents can drop off their children at The Journey-Metro East Church, 200 Dapron Drive in Belleville, and enjoy a break. Children from 3 years old to 21 are cared for by volunteers.
How to help
Monetary donations help the charity provide lunch and toys for the children. Make a donation online through the nonprofit’s Facebook page, Facebook.com/elishascove, or by mail to P.O. Box 23141, Belleville, IL. 62223. Checks should be made payable to Elisha’s Cove RECspite Center.
Volunteers who are patient and empathetic are welcome to help with the children.
For more information, call Melanie Stith at 314-433-5372 or email firstname.lastname@example.org.
Follow Elisha’s Cove on Facebook for monthly updates about respite days.