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Caring Connection network supports families by Dick Peterson Public Relations If there's one thing Melissa Jackson wants people who have children with special needs to know, it's that they are not alone. And as a trained telephone support parent for MUSC's The Caring Connection, she's not alone either. Melissa and husband, Tommy, have Stephanie, their 7-year-old daughter, who has Down syndrome, heart defects and vision, speech and hearing deficits. As a telephone support parent, Melissa listens. She listens, and holds back the “you-ought-to” and “you-should-have” advice that keeps wanting to surface as she hears the parent of a child with severe disabilities express grief.  “I know the best help I can give is to listen and let her know she's not alone,” she said. The Caring Connection has been Amarylis Cranwell's mission. As program coordinator for the past five years and the parent of a daughter with Down syndrome herself, Cranwell also understands the mix of frustration, grief, pain, and anger that can accompany basic needs, like the next meal, an appropriate school, a night out, insurance coverage, or a ride to the grocery store. “It's hard to be there for all the special needs,” she said, describing the scattered array of services that for one reason or another seem impossible to locate, access, or coordinate. That's where Cranwell makes the connection. “The Caring Connection was set up in the Tri-county area to provide information, referrals and to just offer emotional support to parents with special needs children,” Cranwell said. “We actively listen.” She said one of the first things parents who discover the Caring Connection realize is that there are others who have children with special needs, often many just like their own. The Caring Connection is an active network of families, teachers, health professionals, and others who care about children with disabilities.  In addition to the information sharing and the long- and short-term support groups accessed through the Caring Connection, the program also has its mission to “raise our community's awareness of families and children with special physical and/or developmental needs,” Cranwell said. And that's a goal shared by Melissa and her husband, who turned to a support group through the Caring Connection soon after their daughter was born. Before long she saw the need to educate the children in her neighborhood about Stephanie's Down syndrome, and to carry that education into school classrooms where an awareness of children with disabilities might eventually make them more accepted in the community at large.  “They all wanted to know why she couldn't talk. But as she began to learn sign language, they did to. Just so they could talk to her.” Melissa said she is comforted by the attention other children in her Summerville-area neighborhood give to Stephanie. “Especially when she decides to sneak out the door.”  “These have been some crazy times, a real roller coaster ride,” Tommy said. “She's changed our lives,” Melissa added, recalling the multiple heart operations, Stephanie's hearing and vision loss and her dyspraxia—or frustrated speech—that has made it necessary for her to use sign language to make herself understood. Melissa admits to a measure of impatience with people who tell her God has given her and Tommy “a special treasure” in Stephanie. “What God has given us is the ability to cope with a disabled child,” she said. “So when I'm on the phone with another parent, I don't hand out advice. I listen, and let them tell me how they feel. “Eventually you get over the dreams you thought you lost,” she said. “Stephanie has been a joy. Everybody loves her, and if they don't, they’re losing out.  “Stephanie has taught us a lot. She has taught us to be tolerant with others and to appreciate the little things in life. Every new thing Stephanie can do, every hug, is a big deal.” As a support network for families, the connection offers a variety of services and activities organized and coordinated by Cranwell, but provided by the parents and families themselves. They include: Information on resources and services Referral to appropriate agencies and support groups Quarterly share groups (with speakers) that offer information, training and sharing opportunities Trained volunteer support parents who provide active listening, grief and coping techniques, and information Quarterly newsletter that lists Caring Connection activities and local/state support activities Monthly Mom's Night Out with dinner, socialization and sharing Monthly Family Bowling for families whose children with special needs are age 5 and older Monthly Coffee and Conversation Drop-in, which promotes fellowship and networking Family Holiday Social with games, music, educational program, and catered lunch Peer Parent Support Program that allows on-site support to families with children in MUSC's NICU, PICU, and other special care units, sickle cell outpatient clinic, transfusion area, and 7th and 8th floor inpatients Networking activities, which allow parents to meet and share with other parents who have similar circumstances Volunteer opportunities for parents and the community to help with events The Caring Connection, a part of the MUSC Department of Pediatrics, Division of Genetics and Child Development, is funded by a grant from South Carolina DHEC and Children's Rehabilitative Services. The Peer Parent Support Program is a pilot project funded by Children's Rehabilitative Services and MUSC’s Children's Hospital Fund. For more information about The Caring Connection, contact Amarylis Cranwell at 876-1505 or e-mail cranwela@musc.edu.