by Tali Toland

When a child is diagnosed with a chronic illness or disability, life is immediately turned upside down. You don’t always know where to turn for help and can feel alone on your path to helping your child. Support groups can often be vital lifelines to families – people who understand what you’re going through, who can offer advice and resources. Here are some prominent Atlanta organizations that help special needs families every day.

FOCUS

Its mission: To offer emotional, informational and physical support to families of children with disabilities or lifelong medical conditions through a variety of programs. FOCUS believes that by helping families, it helps the children.

www.focus-ga.org • 770-234-9111

FOCUS (Families of Children Under Stress) has support groups in 12 metro-Atlanta areas. These groups, known as a “share groups,” are the core of the organization’s structure and were the first programs offered. Today, FOCUS also offers several “specialty” share groups, including the 5 & Under Group, Bereavement Group, Dad’s Group, Parents of Teens Group and Grandparents Group. These meetings are facilitated by trained parent volunteers and act as an informal time to share the joys, the how-tos, and even the heartaches of parenting a child with multiple disabilities.

“We also have Extra Special Saturday Respite care in seven locations each month,” says Executive Director Lucy Cusick. “Our summer day camp, Camp Hollywood, is available in 10 locations around the area.” FOCUS also offers family fun weekends, educational conferences and workshops, and other family activities. “The many activities we offer allow families a time to network, get to know each other and have fun, too,” she says.

Cusick became involved with FOCUS in 1987, after her son was diagnosed with cerebral palsy. “I was so relieved to find other families dealing with similar issues,” she says. “I still remember my first FOCUS support group – when I walked in the room, the moms were smiling! At the time, I couldn’t imagine smiling again. … These moms had children with serious conditions, and they taught me to enjoy the good days and survive the bad days.”

To join a support group, simply fill out a brief questionnaire and be willing to share with others. “It’s nice to have people recognize the stress involved with raising a child with special needs,” says Cusick. “It’s wonderful to have a neighbor ask if they could baby-sit for an hour so I could go to Kroger by myself. How nice to return home from a doctor’s visit and have a pot of chili from a friend, ready for dinner. Small acts of kindness make a huge difference in our lives!” 

Parent to Parent

Its mission: To support Georgia families and individuals affected by disabilities.

www.parenttoparentofga.org  • 770-451-5484 or 800-229-2038

Parent to Parent (P2P) currently has a base of more than 5,000 professional resources and 2,500 parents who provide support and direction to others. “That is priceless,” says Marchia Williams, director of peer support at P2P. “We see parents and professionals getting involved in Parent to Parent from all different directions.” Hospitals, social workers and parents who have used P2P in the past or currently use its services tend to pass the word along to other parents. “Parents need to know that they are not alone and there are other parents that have been where they are,” says Williams. For a newly diagnosed family, sometimes just getting a correct phone number to a much-needed resource can be a big help, she adds. 

P2P has five offices across the metro area where coordinators, two of whom are fluent in Spanish, will support parents through referrals and listening.All of the coordinators at Parent to Parent have children, grandchildren, nephews or nieces with disabilities. “They know what is it like for families,” says Williams. “They have the knowledge to share and assist parents because they really understand the challenges as a parent or family member. When a supporting parent talks to another parent, it usually helps the supporting parent as much as it does the parent seeking help.”

Parent to Parent is also home to three other programs that assist parents in accessing resources. The first is the Parent Leadership Coalition, which consists of 11 state agencies. “The vision of this initiative is to have a local contact in every Georgia county so parents do not feel alone,” says Williams. The coalition will be made of teams run by local parents who know what resources are needed in their area.

F2F and N2C are the other new Parent to Parent programs. Family to Family (F2F) is a project assisting parents’ health needs, and Navigation to Connections to Improve Student Outcomes (N2C) is a parent training information center, which is designed to improve the ability of families to access education, advocacy and community support. Both programs will be available throughout the metro area by the beginning of 2008.

Georgia Parent Support Network

Its mission: To provide support, education and advocacy for children and youth with mental illness, emotional disturbances and behavioral differences, and their families.

www.gpsn.org • 800-832-8645 or 404-758-4500

Georgia Parent Support Network (GPSN) was founded 18 years ago by family members of mentally ill children and continues to be family-driven today. “GPSN serves as a guiding force for children with mental illness and their families,” says Co-CEO Sue Smith. “GPSN has changed my life completely into a life dedicated to serving families.”

GPSN has a variety of programs in place to aid families. CORE Services provide outpatient services such as therapy; medication management; crisis intervention; diagnostic, psychiatric and psychological assessments; and substance abuse counseling.

Respite care, or planned relief, for guardians of troubled children is also offered by GPSN; children are placed in the care of trained individuals, so parents can truly use the time away to relax.

There is also a peer center available to kids in the GPSN family. It’s a place where young adults are empowered to live their lives as productive, healthy citizens in their communities. At the center, young adults receive the guidance and support needed to help them transition into adult roles.

“As an advocate for children with mental illness, emotional disturbances or behavioral differences, GPSN supports families during the holidays and through work at local shelters and food banks,” says Smith. “We also strive to provide opportunities for each employee to be supported in pursuing their dreams. This brings helping others full circle.”

Autism Society of America – Greater Georgia Chapter

Its mission: To improve the lives of all affected by autism.

www.asaga.com • 770-904-4474

The Autism Society of America’s Greater Georgia Chapter (ASA-GGC) is located here in Atlanta. The nonprofit organization is a leading voice and resource of the community affected by autism. The group strives to enable individuals with autism to find meaningful participation and self-determination in their lives. By providing current and accurate information on diagnoses, treatment and research, as well as legislative updates, resources and programs, ASA-GGC can support families as they design intervention strategies for their children. “We want people to know that life can be rewarding for a child with autism,” says Executive Director Cindy Pike. “Simply knowing children with autism can also be rewarding.” 

Pike originally became involved with ASA as a volunteer. “My son, Andrew, who’s 9 now, was diagnosed with autism at 14 months,” she says. “I later served on the board of directors, then as the programs and services director, and am currently the executive director.”ASA-GGC accepts new members and volunteers throughout the year and has plenty of events and ways to get connected available to families. Its Fourth Annual Autism Conference will be held next March to provide families with resources and information on autism and related disorders.

For newly diagnosed families, Autism 101, a free, quarterly seminar and resource fair, has information on all autism spectrum disorders. The seminar provides information that educates, enables and empowers families as they begin the journey of caring for, planning for and treating their child. “Families also get a chance to meet and interact with local providers of autism-related goods and services at these events,” says Pike.

Special events like Special Time with Santa create a safe and friendly atmosphere for children on the autism spectrum and their families to traditionally celebrate the holidays. “Visiting with Santa without the pressure of long lines and crowded malls is really important for these families,” says Pike. “The event includes a visit with Santa, professional photography, a sensory room, music time with a certified music therapist, crafts and refreshments.”