- Associated Press - Monday, March 31, 2014

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.

Hudson agreed.

“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.”

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