171 Ashley Ave.
Charleston, SC 29425
843-792-1414
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September 2008
Support for Parents of Children with Special Needs
Raising a child with special needs or a disability is fulfilling in ways you'd never dream, says Jackie Richards. But it can also be a lonely place.
As the associate director of Family Connection of South Carolina, a state-wide non-profit that provides support for such parents, Richards knows too well the statistics: in 80 percent of families with special needs, marriage ends in divorce. Child abuse in these families is also drastically higher than in other family homes, occurring three times more often.
Growing up with a father who was disabled, Richards also knows first-hand the stresses these families face every day; she and 90 percent of the staff at Family Connection have a family member with a disability, so they provide a knowledgeable and experienced backdrop for the families they serve.
Through unique parent-to-parent support groups and connections, Family Connection strives to "make families stronger so the special needs child can reach his or her greatest potential," explains Richards.
Founded in South Carolina in 1990, Family Connection grew from a group of parents of children with special healthcare needs who realized they gained tremendous information from each others' life experiences.
That grassroots effort has multiplied to become a parent-to-parent network that includes a database that can find a match for just about any diagnosis and/or concern, be it school or development, or just a need for an understanding ear, says Richards.
"If we can't find a match for parents within South Carolina, we do national searches for families," she explains.
With the help of more than 500 support parents across the state, the non-profit facilitates an average of 1,800 "matches" a year.
To date, Family Connection has matched 26,000 parents.
"The medical teams heal and cure these children," explains Richards. "Family Connection strengthens them in and beyond the hospital."
Lean on me: programs for the hard times
Among the many support, outreach and educational programs the organization provides are family respite cooperatives, which allow a break for parents and fun time for children; Kid Connection, for siblings of kids with special needs; family networking and social events; and Parent Partners, which places trained parents in neonatal intensive care units, clinics and pediatric offices around the state.
In Charleston, Family Connection has partnered with MUSC to provide a "parent partner" in the NICU: Charlotte Edwards is a parent of a NICU "graduate baby" who provides one-on-one, crib-side support in the MUSC NICU a couple of times a week to give emotional support to other parents. Edwards also shares information on resources and works with social workers to help families transition into everyday life with their newborn.
"This early, intensive support is one of most important elements our organization provides," says Richards. "It's a time of tremendous stress, doubt and concern for these parents."
Edwards agrees: "The NICU can be quite a rollercoaster ride," she notes, adding her son was in the unit for four months. "Having a Parent Partner along with a support group in the NICU helps families realize they are not alone."
"This family-centered care concept demonstrates how MUSC is really making parents part of the team," says Richards.
Parent partners like Charlotte provide home visits and support for parents for several months if the child is enrolled in BabyNet, South Carolina's early intervention system.
Funded by a March of Dimes grant, the Parent Partner NICU program also enables Edwards and her counterparts across the state to educate parents on safe sleeping practices to help prevent Sudden Death Syndrome.
Project Breathe Easy (PBE) is a parent-to-parent Family Connection program for parents of children with asthma. The program provides mattress and pillow encasements, as well as a care notebook for parents. It's a free service available to all kids with asthma in the Tri-county area.
Around the state, several hospitals and clinics have expanded the PBE program to also provide home education services to these parents. "We've seen a reduction in hospitalization and ER visits, missed school and work days," says Richards.
"Parents all over South Carolina are supporting each other through Family Connection," says Richards, who says that, thanks to her father, she developed a passion for the world of people with special needs.
"I became passionate about how special people are when they have special needs," she says.
"I want all the families out there to know we have great things available to help them. We're here for them."
For more information about Family Connection of South Carolina and its programs in the Charleston area, please visit www.familyconnectionsc.org or call (843) 556-5015.
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