Photo courtesy Family Support Network of Eastern N.C.

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The Family Support Network of Eastern North Carolina provides support to families with children with special needs in 29 mostly rural counties.

By Taylor Sisk

Matthew Howard’s birth weight was 1 pound, 15 ounces. He was more than 10 weeks premature.

Matt was born May 12, 1997 and had congenital problems with his airway. When he breathed, his trachea would collapse. He also had abnormally developed lungs. He spent six and a half months in the hospital.

When, at four months, the doctors told Matt’s mother, Naomi, that he probably needed a breathing tube, she said she bargained with God, pleading that if he’d prevent that from happening she’d go to church every Sunday forever. She lost that bargain, but thanked God her son was still alive.

Matt was then given a feeding tube.

What Naomi terms the “roller-coaster ride” had begun for this single mother of two, a resident, at the time, of rural Washington County.

Fortunately, she says today, she wasn’t alone in that neonatal intensive care unit at Pitt County Memorial Hospital. Alongside her were Mary Turner and Brenda Boberg of the Family Support Network of North Carolina, a program that connects families who have children with special needs with the services and support they require.

Naomi Howard and her son, Matt, in their Greenville home. Photo credit: Taylor Sisk

With Turner and Boberg’s guidance, Naomi Howard said, “I learned to be an advocate.”

A lot with little

The Family Support Network of North Carolina is a statewide web of 11 local programs.

“They’re organizations that do a tremendous amount with a small amount of funding,” said Tamara Norris, director of the Family Support Program at UNC-Chapel Hill’s School of Social Work. Her office provides FSN with technical assistance and training and administers funding provided by the state Department of Health and Human Services.

“None of them have the funding they need to meet the need in their communities,” Norris said, “and those funding sources have contracted in recent years.”

Brenda Boberg is the executive director of one of those programs, the Family Support Network of Eastern North Carolina. She contracts with Vidant Medical Center (formerly Pitt County Memorial) in Greenville to provide support for families with special needs kids in 29 mostly rural counties.

Howard remembers meeting Turner and Boberg in that intensive care unit: “My impression of them was, ‘Who are these people?’… It was hard to let them in because I didn’t know what to expect.”

But she learned that they’d both had a child who’d spent time in the NICU.

That makes a tremendous difference, Norris said: to receive “support that comes from a parent who has been there and experienced that and can say, ‘Yes I’ve been there and you will live through this. Let me share with you what I have learned.’”

“It eased it up when they said, ‘We’ve been where you are. We know what you’re going through,’” Howard said.

Family is …

Transportation is a major issue for many of the families Boberg works with, which is why it’s “so critical that we provide the emotional support within the hospital,” she said. “So many of these families are two and a half or three hours away from home.”

Brenda Boberg is the executive director of the Family Support Network of Eastern North Carolina. Photo courtesy the Family Support Network of Eastern North Carolina

Boberg suggests that the Family Support Network puts into practice a broader redefinition of “family.”

“There’s no such thing anymore as the two-point-five children, mom and dad,” she said. “The family is whoever the family decides is family.”

Howard was constantly driving to Greenville for Matt’s appointments, and he was in and out of the hospital. She decided to move her family there, which put her closer to her extended “family” of mutual support.

She recalls going through stages of grief – denial, anger, bargaining, depression, then acceptance – and Boberg’s steadying hand throughout.

“She helped me through that process. She helped me to understand. She encouraged me to ask questions.”

Boberg helped groom an advocate.

“I had no clue about what advocacy was until I had that little boy,” Howard said recently. “I had no clue. But with the teaching, and telling me what my rights are as a parent, and just being in that unit, it made me what I am today.

Howard went on to earn a master’s degree in human behavior and worked for a while for Boberg.

“Brenda would always pull me in for the hard cases,” she said. “She’d say, ‘I know if anyone can do it, you can do it.’”

“Every hour, every day they spend in the NICU, I can relate to,” Howard said. “I’ve been there at one, two, three o’clock in the morning. They’ve had to run me out. I know what it’s like not to be able to take your baby home.”

Boberg still calls on her from time to time.

Without a word

For families with a child in an intensive care unit, “the better the family is supported, the better they’ll do in the long run” Boberg said. “There’s less acute stress and less [post traumatic stress].”

Photo courtesy Family Support Network of Eastern N.C.

She talks of helplessness in the moment: “I can’t hold my baby. I can’t nurture my baby. I can’t bond with my baby like I want.”

“There’s such a need,” Boberg said. “There are so many people in these counties who have nothing. And then adding a child who they love dearly, and feeling inadequate as a parent because they’re unable to meet anybody’s needs, including their own …”

In the midst of it all, she allowed, it’s difficult to know the extent of the difference the network makes.

“The gold standard,” Norris said, would be to be rated as an evidence-based practice. What complicates that, she said, is that there’s no universal definition of family support.

“We know that family support makes a difference, and that parent-to-parent support can make all the difference,” Norris said. “But there’s not that evidence-base that you often need to get funding.”

The School of Social Work collects and analyzes studies on social support. One such study indicates social support is a stronger predictor of caregiver well-being than the behavior problems of the child.

And there is the anecdotal evidence.

Boberg recalled how at a fundraiser two years ago, she reunited the first parents she connected with each other when the program was launching, two women whose sons ended up going together through early intervention and the school system.

“When these two mothers met 27 years ago, they knew they were not alone,” she said. “They knew that someone was going to help them … another parent that would understand, that had been down that route.

Boberg said instead of being able to tell the audience about their experiences, they just held onto each other and cried.

“That was all they did.”

The ride

That roller-coaster ride doesn’t stop when you leave the hospital,” Howard said. “It’s constant, throughout your child’s life.”

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Over the years, Matt has gathered additional diagnoses: He’s autistic, legally blind, hearing impaired. He has cerebral palsy, hip dysplasia, stage 3 kidney disease, an enlarged bladder. He’s nonverbal (though once you get to know him, his mom said, “you’ll understand what he’s trying to tell you, what he likes and doesn’t like”). He’s unable to walk unassisted.

“He’s been through a lot,” Howard said, “and he’s still truckin’ along today.”

Matt goes to school on a modified schedule, four days a week. “He loves school,” Howard said. “Oh, my goodness, he loves school.”

And he loves the Special Olympics. “He thinks when people clap, they’re clapping for him,” she said.

“I’m still advocating for him today,” Howard attested. Having just turned 18, Matt is transitioning to adulthood, “and that’ll be a whole other process.”

But there are others out there who’ve been down this path, and who she knows she can rely on.

After that reunion of the women whose paths had crossed 27 years ago, they came to Boberg attempting to apologize for not having spoken to the audience.

“I said, ‘Your tears were the story in itself.’”

It’s the story of families knowing they’re not alone, Boberg said, as they “navigate a journey they never asked to be on, the road they never knew existed.”

It often all seems overwhelming, Howard said, but that sense can be overcome. And “the payoff,” she said, “is that you still have your child, they’re happy, and you’re living life to the fullest.”

[box style=”2″]This story was made possible by a grant from the Winston-Salem Foundation to examine issues in rural health in North Carolina. [/box]

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