The Family Support Network of North Carolina connects families who have children with intellectual and developmental disabilities with resources, and each other.
By Taylor Sisk
Deanna Van de Walker says that families who have a child with special needs could really use an Anne Sullivan – as in Anne Sullivan the “Miracle Worker,” the woman who taught Helen Keller to communicate.
Van de Walker lives in Elizabeth City and has a 9-year-old daughter, Lyrica, 9, with autism. She isn’t holding her breath, waiting for her own Anne Sullivan to appear. Neither is she standing by idly, leaving it to others to make decisions for her and her daughter.
Van de Walker has been choreographing Lyrica’s care through a maze of often befuddling systems with a growing confidence – confidence gained, in large part, through the support of others facing similar challenges.
She’s a member of a family support group brought together by the Family Support Network of North Carolina. For 30 years, the Family Support Network has been connecting families who have children with special needs to resources within their communities, and with each other.
Services for families dealing with intellectual and developmental disabilities are scarce in Van de Walker’s mostly rural region of the state. Families must rely on one another for practical information, seasoned advice, affirmation and inspiration.
All of which is in plentiful supply – along with chicken, sides and dessert – here at Cora’s Educational Center in Elizabeth City on a Thursday evening in late January. It’s the twice-monthly support group meeting for families from Pasquotank and surrounding counties who have kids with special needs.
Brenda Dunford, program coordinator for the Family Support Network of Northeastern NC, serves as host, facilitator and rabble-rouser. Dunford covers 10 eastern North Carolina counties. She’s been doing this work for more than a decade, and she knows the ropes.
This group has been convening for some 10 years and a number of folks have been members for a good chunk of that time. Kaysha and David Pettaway are relatively new: They’ve been coming for about three years. Prior to that, Kaysha says, “We were lost.”
The Pettaway’s are a former military family. Transitioning to the civilian world can be difficult, Kaysha said. You’re pretty much starting from scratch, left to your own devices to find the services your kid requires.
Their child is Nate; he’s 8, has been diagnosed with autism and ADHD, and suffers from asthma. The Pettaway’s moved from Craven County when Nate was 5, found out about Dunford and the Family Support Network and, “Everything just took off from there,” Kaysha said. “Everything I find out now is from this group.”
Joyce and Sal Lazzara were in the same situation: former military, new to the area, adrift.
“It’s been a transition to, ‘OK, now we’re civilians. What’s available?’” Joyce Lazzara said. “Because there’s no handbook they hand you that says, ‘This is your transition.’”
The Lazzaras are the parents of Marrissa. She’s 10, has autism and behavioral health issues, and is largely nonverbal. The family was “going it alone” until they found Dunford and the support group. They now more easily navigate “the system.”
Like the rest of these families, the Lazzaras must travel to the Tidewater area of Virginia (an hour’s drive) or Greenville (a good hour and a half) to get most all of their child’s medical needs met – speech therapy, physical therapy, developmental and behavioral therapy, diagnoses required for service reapproval – just about everything except primary care.
It takes a toll, in time, energy and finances. Joyce Lazzara said there are occasions when money is so tight they have to choose between groceries or gas to Virginia for a speech therapy appointment.
Dunford helps the Lazzaras coordinate the best options for those services and to research any possible means of financial assistance. She’s also accompanied Joyce on a number of individualized education program meetings at Marrissa’s school.
“They’d ask me questions,” Joyce Lazzara said, “and you’d feel intimidated, and she was right there, going, ‘This is what we want.’
“It was great having her in my corner to give me that little edge.”
‘Coming into the fight’
The Family Support Network was formed in 1985.
“Families said, ‘We need public policy to better support our kids,’ and they got those policies in place, and they also learned they could make their children’s lives better by better supporting each other and developing that community,” said Tamara Norris, director of the Family Support Program at UNC-Chapel Hill’s School of Social Work.
Norris’ office provides technical assistance and training to the network and administers funding provided by the state Department of Health and Human Services.
The core of the Family Support Network, Norris said, is the parent-to-parent support model, which she calls a “critically important social, emotional type of support.” It’s also “instrumental support,” she said, “in that those local Family Support Network programs help families to find the services they need, and it is often best received from parents by other parents who have experienced that.
“And what that does is end up helping that family be more confident and better supported, so that they’re able to better support that child.”
“It’s just awesome to have the other people who have been there, done that, who have fought for their kids,” Joyce Lazzara said. “They let those of us who are just coming into the fight know what we need to do.”
‘Eyes and judgments’
Sheron Mosby’s son Elijah is 5, and has autism.
Of Dunford, Mosby said, “Oh, she’s helped me tremendously.”
Initially, Mosby said, she was reluctant to get involved with the group, “because I’m really personal; I don’t tell a lot of my stuff. I came, and I liked what I saw in the group, and I continued to come.”
Dunford believes things have improved for these families in the past decade or so – that, for example, the public schools are more receptive to their needs – and that that’s very much an outcome of the type of interaction taking place at this Thursday night gathering.
“When you have a group of parents like this,” Dunford said, “and they can bounce ideas off each other, they become better advocates for their children … they can stand up for one another.”
For Van de Walker, it’s about feeling connected.
Before she began attending these meetings, she said, “I didn’t really feel welcomed anywhere. It was always eyes and judgments.”
Her experience had been: “Here’s a diagnosis. Have a nice life.”
“It’s like family now,” Van de Walker said. “I’m getting out of my shell.”
Coming soon: Coordinating support services in Western North Carolina.[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]