SUMTER, S.C. (AP) - Two Sumter mothers have bonded over children with developmental disabilities in the 20-plus years they’ve known each other.
Nancy Gardenhire’s son, John E. Gardenhire Jr., whom everyone calls “LJ” for “Little John,” has cerebral palsy.
“It’s been an interesting journey,” she said. “I wasn’t told about a lot of the services back then. A lot of parents find it frustrating, and there is still not a lot of direction given. You have to get out there and ask. Don’t take ‘no’ for an answer.”
March is Cerebral Palsy Awareness Month as well as Developmental Disability Awareness Month. Melissa Hudson’s son, Charlie, has shown developmental delays after being born prematurely weighing less than 2 pounds.
“My husband’s wedding band could go all the way up his arm,” she said. “He’s our little miracle. He’s had heart surgery and some hearing loss. As far as development, Charlie didn’t walk or crawl right up until his second birthday, and his fine motor skills still need work.”
She learned about BabyNet - the S.C. system of early intervention for infants and toddlers with disabilities and development delays, as well as their families, under the Individuals with Disabilities Education Act - at the hospital, but was hesitant of the label it might have placed on her child. She signed up later and worked with the early interventionists, but most of that assistance ended when Charlie turned 3.
She thought all the paperwork had been signed and taken care of in October to get Charlie into the next appropriate program for his level of development, and she is still waiting on a response come March.
“You need a Ph.D. to understand these waivers,” Hudson said. “It’s a 50-page packet. People that made these laws and guidelines were never in contact with parents of children or adults with disabilities. They are not aware of what it takes to care for someone with special needs, or parents would not have to jump through all these hoops.”
Gardenhire cautioned her that it will only get more difficult as Charlie ages.
Hudson first met the Gardenhires when she was 13 and LJ was 2-and-a-half. Gardenhire was pushing her son around the neighborhood they all lived in at the time, and Hudson offered to baby-sit.
“God was preparing you a little with LJ,” Gardenhire said.
“I always knew it was rough, but I never knew it was this rough,” said the now 38-year-old. “I would be a basket case if I wasn’t somewhat aware of how the situation could be.”
The two mothers share information about navigating federal assistance as well as how to connect with nonprofits such as Family Connections South Carolina, a statewide organization that links families of children with special health care needs, disabilities or chronic illnesses with resources, support and education.
“I want to share how I’ve been blessed through this whole journey bringing him up,” Gardenhire said. “So many people I’ve come in contact with because of LJ. They’ve opened their hearts, and I didn’t even have to ask. Those I had to ask - like Medicaid - have been like pulling teeth.”
The blessings keep coming as her church’s life group gave her a lift for LJ this past Christmas. It costs $1,200 to $1,300.
“It’s where you see Jesus’ love,” Gardenhire said. “They were doing this all behind my back. I had not been able to attend class for six to eight months because I could not find care on Sundays. It’s been a life saver, (and) he loves it. LJ really enjoys it.”
While a personal care aide does come to her home for several hours a week, and LJ goes to a day program for a number of hours per day, the single mother is still the main caregiver at home. This means shifting LJ’s 165 to 170 pounds from place to place, and LJ is no longer able to give her any kind of help moving himself.
She had applied for federal assistance for a lift in June last year and received a denial in October.
“Nancy has truly been a blessing to us,” said CarolAnn Paul, a member of the life group who researched the lift. “Her testimony of the commitment of sacrificial service and love to LJ is truly such a model for us. She’d shared with us the various medical situations they were going through, and we’d been praying regularly.”
Though they understand there is not a “bottomless pool” of money, group members were shocked she didn’t get the waiver for the lift.
“It just blew us away,” Paul said. “If anything happens to Nancy, what will happen to LJ? She could submit another request, but she can’t wait another five months. So our life group at Alice Drive (Baptist Church) decided we wanted to do something for Nancy.”
She also went to Gardenhire’s home to help set it up and test it out.
Gardenhire would like to see more churches offering programs for special needs individuals at all age levels.
“There is still a long way to go in the faith community, but it’s a great place to start building awareness and supporting those families,” Paul said.
She’d also like to see one resource agency.
“Knowing Nancy as long as I have and seeing her frustration with the lack of coordinated services, an index is what we need,” Paul said. “A coordinated, community list that people can access.”
“I’ve been telling Nancy, there are a lot of different assistance programs, but you have to dig for them,” she said. “They don’t tell each other about each other. The system needs to be revamped.”
Information from: The Sumter Item, https://www.theitem.com
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