Network will offer help for families
By Phyllis Moore
Published in News on April 1, 2007 2:04 AM
Cindy Jackson is the mother of a special needs child. But when Molly was born three years ago, they did not have the support and information that is available today.
"We came home with a piece of paper. We relied on the Internet. It was horrible," Mrs. Jackson said of the days following the doctor's diagnosis.
The support of family and church friends was great, she said, but it wasn't until she linked up with parents going through similar circumstances that relief set in.
"We went to Utah when (Molly) was 2 and met with 42 parents of children that had the same syndrome," she said. "They were from Denmark, the United States, everywhere."
She thought, "If I can bring that kind of support here, even if it's not but two hours a month, that's better than nothing."
Now she is in a position to do just that. She was recently named parent coordinator for Family Support Network of Eastern North Carolina, serving in Wayne County.
The network, formed in 1987, is a parent-to-parent support program designed to provide emotional support and resource information for families of children with developmental, physical or medical needs as well as families who have experienced the death of a child.
All services are free and it is a means to link parents and families with others, whether locally or elsewhere, experiencing the same needs.
"The main thing is for the support -- having someone to talk to, personal contact," Mrs. Jackson said.
Brenda Boberg, executive director for the eastern region, is based in Greenville. That has presented an obstacle for some, she said.
"We've provided services in Wayne County on a very limited basis," she said. "One of the hardest things for families is just picking up the phone and making a call because that's just one more thing to do. Now having someone located in Wayne County, with all the different connections that we have, it just makes it easier for families to get what they need in their communities."
The access to services worked for Mrs. Jackson, so when she was approached to become parent coordinator in Wayne County, she said she felt led to respond. She was hired in late January in a limited capacity, working on average 10 hours a week.
She said she will meet families wherever they are comfortable -- typically in their home or at a school. At the outset, she is just trying to get the word out that she is willing to help.
"My goal is getting started. I have met with pediatricians' offices, anywhere there's a child born with special needs, social workers at the hospital," she said.
"A lot of parents are receptive to receiving help. I can get any kind of medical information they need on disability. We have a central directory of resources that I can call, get information on their child's special needs."
All information is confidential and there is no age limit on the children served. She said she works closely with the Children's Developmental Services Agency, which serves children from birth to age 3. Once the child turns 3, cases are typically turned over to school systems for services.
Wayne County needs the support network, Mrs. Jackson said. A branch was previously set up several years ago but somehow fell by the wayside. She is optimistic that it will benefit many and hopes the community will help it succeed.
"I would like county input of what parents of special needs children want," she said. "I think every parent probably needs something different."
Transportation, for example, might be a problem for some. Which is why she would like to have meetings in different parts of the county.
"There's not a monthly meeting as such, but if families are interested, I would like that," she said.
Likewise, it will be up to the public to determine what they would like, Ms. Boberg said.
"If they want a play group, dads want to get together to share, we can't come in say, 'This is what we want to do.' We need to know what the communities want," she said.
In addition to providing services for families, Ms. Boberg said the network could also use volunteers to encourage others.
"We need families that have a child with a disability willing to talk with others, to go through training so they could effectively listen to other families," she said. "Even if a family's not needing the services right now, to volunteer their time to talk with others would help."
The main thing Mrs. Jackson is focusing on at the outset, she said, is getting the word out and letting parents know there is help and resources available.
"I think it's a positive thing. Anytime you have support, you can't go wrong," she said.
"Me being the parent of a special needs child. ... I feel like I will do the best job possible because I'm in their shoes. (And) if I could spare somebody what we went through years ago, it would be a really positive thing."
For further information on the network or local services, call Mrs. Jackson at 922-4552 or 1-800-376-4494, or via e-mail at [email protected]. The Web site for the Family Support Network is www.fsnenc.org.