FLOYD — Becky Silvey has seen it all.
The Franklin County mother has raised three children who have faced challenges ranging from addiction to autism to attention-deficit/hyperactivity disorder. She’s struggled with a troubled marriage while navigating the school and criminal justice systems to advocate for her children. At one point, Silvey found out her oldest son had overdosed on drugs at the same time the second, then age 14, was hospitalized for depression.
“It was horrible. I felt numb,” Silvey said. “I had to shut my emotions off to figure out how to help him.”
Seven years later, her middle son, now 21, seems to be progressing toward a better life, while Silvey is raising her teenage daughter, who has been diagnosed with ADHD, depression and anxiety.
The difference today is that Silvey has learned to navigate the system. She knows how to access resources, what questions to ask and how to get her kids the services they need. Perhaps most importantly, Silvey has learned that she can’t do it by herself.
“In this rural area, there is no support group,” she said. “You’ve got to go out and make your own.”
Now, as an advisory board member for the National Alliance on Mental Illness’ Virginia Family Network, Silvey is tapping into her own experience to help others. She recently completed training to facilitate a family support group in Franklin County for other parents going through similar struggles. And she regularly participates in a bowling league for children with special needs, which gives their parents a chance to share their joys and frustrations in a supportive setting.
“There’s none of ‘Look at that kid, look what he’s doing,’” Silvey said. “Instead, it’s, ‘Oh your kid does that too. I thought it was just mine.’ We lead similar lives. There’s no judging, no shame there.”
Across rural Virginia, families with children struggling with mental health challenges and intellectual and developmental disabilities such as autism and ADHD often feel isolated and adrift. The Great Recession and sweeping healthcare changes reduced the number of options available for medical services, so seeking treatment often requires driving to facilities two to four hours away.
Wait lists for psychiatric care often stretch six months or more.
Then there’s the stigma. In a social-media driven society increasingly prone to snap judgments, parents of children with special needs feel the weight of eyes around them.
“For years, I felt I was having to apologize for my children’s behavior in public,” Silvey said. “I’ve been in Walmart with my daughter and it was just too much stimulus. She just couldn’t handle it. She’d be laying on the floor under the dress rack, screaming at the top of her lungs. At first, you die of embarrassment. But then I finally realized it was the lights in there that would set her off.”
Other customers didn’t know that, though — and some told Silvey that her daughter’s behavior was a sign of bad parenting that could be cured by spanking.
Parents who raise children with mental health challenges emerge with more wisdom and knowledge. Now, a growing number of programs seek to tap into that hard-won knowledge by utilizing these experienced parents to help other families dealing with the same issues.
‘It seemed like a lot of services stopped at Richmond’
A statewide grant is paying for Blue Ridge Behavioral Healthcare, New River Valley Community Services and the Mount Rogers Community Services Board to hire paid family support partners — people who have raised special needs children — to provide peer support as part of a team designed to support families.
“A lot of parents, when they are first coming into service with their children, have no idea how to navigate the system,” said Kim Curtis of NRVCS, who is the regional task lead on the grant. “With this grant, we can pair a family with a family support partner who has already navigated the system with their children.
“By sharing their experiences, they can help the family navigate the system, learn to advocate for themselves and their children and learn self-care practices. The main thing they’re doing is bringing in some hope, [saying] ‘I’ve been through this. l’ve lived it with my own children. I know how it feels. I’m on the other side of it now and I’m here to support you.’”
The Mount Rogers board has employed a family support partner for a year and is hiring a second. The agency also holds regular support group meetings for its families, divided into two areas within the region it covers.
Teresa Catron facilitates the group that meets for Bland, Smyth and Wythe counties. The group’s schedule shifts seasonally, but it meets an average of twice a month for two hours each. The first half hour consists of a meal, while the rest of the time can be filled with training, a recreational activity like adult coloring or just socializing.
The training on topics such as obtaining Medicaid waivers and advocating within school systems can be helpful, but more than anything, the combination of two hours of childcare and the opportunity to talk with others facing similar challenges provides relief from constant stress.
Providing childcare “really makes us fall under mental health service for the parents,” said Catron. “Empirical research has revealed a positive correlation between support group participation and a sense of empowerment. The parents get a sense of, ‘I can do this.’ They know what questions to ask. They know what to expect. It helps them care for their child and to advocate for their child.”
Catron herself raised a special needs child with a chromosome abnormality that doesn’t have a name. From her daughter’s birth in 1992 until 2011, when she moved to Carroll County to take a job with the Mount Rogers board, Catron lived in rural western Franklin County. Catron said her daughter received good medical care in the Roanoke metro area, but aside from the doctor and a great teacher in the county school system, she felt isolated in terms of finding supportive resources.
“It seemed like a lot of services stopped at Richmond and had trouble getting into southwest Virginia,” Catron said. “Then I moved into this area [Carroll County], and I found the resources are even fewer. They’re slowly coming this way — we’re seeing more autism resources like the autism clinic at Virginia Tech — and we’re thankful to see them finally coming this way, but it seems like it’s a lot slower coming into southwest Virginia.”
‘Knowledge is power’
The National Alliance on Mental Illness is helping to build more support for families, both as home to the Virginia Family Network, which partnered on the systems of care grant, and also by providing training for parents.
That includes a six-hour workshop called “Children’s Challenging Behaviors” in Abingdon and Wise that the group is offering for parents of children with mental health needs. The workshops are taught by parents with firsthand experience and cover topics such as understanding what behaviors are typical and which need intervention, parenting strategies, community resources and more. Notably, both workshops offer meals and stipends for child care.
Additionally, NAMI conducts more extensive, two-day trainings in Richmond to train parents to become community leaders.
“We do a lot of networking and talking with families out in the community,” said Laura May, the Virginia Family Network director and director of children and youth programs for NAMI Virginia. “Connecting people to resources, connecting people to each other, so they can build on each other’s strength and knowledge.”
May also has been through the experience, raising a daughter in rural Arizona.
“Every time I’ve talked to a parent in rural Virginia, my experience has been echoed by their experience,” May said. “There is no accessibility of services. When your child starts having issues, it first usually shows up in school, since that’s where they spend the majority of their waking hours.
“The schools’ response usually is, ‘You need to go to a pediatrician.’ Schools are not good at identifying emotional or mental health challenges. They tend to think it’s all behavioral. And currently, pediatricians don’t have much training in the way of social psychology. They’re great at screening for ADHD but that’s it.”
When rural people are finally advised to seek mental health services for their children, they often have no local options — which often means driving three or more hours. That in turn means missing work and taking on the challenge of an extended road trip with a special needs child, May said. Crisis stabilization makes for an even greater challenge, requiring ambulance transportation — often across the state — along with instructions to find follow-up care, which in rural areas can be difficult at best to obtain.
The family support programs offered by NAMI and the various community service boards seek to counter this dynamic by providing expert advice offered by others who have been there.
“It’s one tool for a family to have another family that’s going through something similar,” May said.
“Knowledge is power. … You can help your child to succeed, but only if you know how to help your child succeed. We have other parents who have gone through it or are going through it. We want to go out and give them the tools to let them do that in a way that actually helps support other families and not just do it for them.”