Support…to group or not to group?
Finding a support group that works for you
Written by Kathie Dell'Arciprete,
Former Family TIES Staff
According to Webster’s Dictionary, the first definition of ‘support’ is “to endure bravely or quietly.” In a perfect world, parenting a child with special needs is not a challenge. The truth of the matter is, challenges do occur in special needs parenting. When parents no longer feel we can endure or ‘keep going,’ we need to reach out, for our own stability. Having another person validate our feelings in times of grief, sorrow, and stress is essential to our health and well-being.
Remember: to take care of those we love, we must first take care of ourselves. When a parent hears of their child’s special needs, a wide range of emotions comes with the diagnosis, whether it is a terminal illness, life-changing event, or diagnosis, and begins to soften over time. Dr. Maria Trozzi theorized through her research and work with the Good Grief Program that parents encountering any of these events go through a grieving process. Most parents of special needs children will do this on a perpetual basis.
They hunger for support, guidance, nurturing, and reassurance that they truly are not alone while maneuvering the maze of life. At times, they are physically and mentally exhausted. To compound the challenges, parents sometimes feel isolated and alone, as if there truly is no other person experiencing and feeling what they feel. It is through support that parents learn to keep going and bravely endure life circumstances.
Finding a good support group is like finding a good pair of jeans. They look great on the outside at first. After the initial trial period, you either break them in and they’re a great fit - or you look for another. Support comes in many shapes and sizes. Individuals may find support through friends, colleagues, parents at schools, places of worship, and even online. Support can also be found in books. Co-authors Gina Gallagher and Patty Konjoian offer support in their book "Shut Up About Your Perfect Kid," through an on-line forum, and in workshops throughout the country for that one-stop rejuvenating pick-me-up. For all of us, there are times when life becomes overwhelming, including families of children with special needs. Family and friends with the best of intentions may be able to empathize with you, but they are not necessarily walking your walk.
It is in these times that seeking support outside may be more beneficial to helping you through. The fear of the unknown prevents many people from seeking the support that could make their lives more manageable. What group is for me? Will there be many people there? How do I know which type of support group is best for me? Do I really want to share this information with these strangers, they’ll think I’m nuts!
Once you’ve decided to seek support, think about what will work best for you. The major types of support groups are PEER, generally composed of individuals facing similar challenges, either diagnostic-specific or by age; PROFESSIONAL, generally led by psychologist, rehab councilor or social worker in a group-like therapy fashion; and DISCUSSION GROUPS, which offer an educational component and generally a discussion forum. Professional groups are the more traditional method found using the standard group setting. Peer and Discussion Groups use traditional group settings and, thanks to modern technology, the world-wide-web and telephone, too.
Charlene, the mother of a child with mental health issues, found support groups difficult. “For me, support was easier on the phone or through on-line chats. My child’s condition sometimes prevents me from attending scheduled groups.” Gail, the mother of a child with Down Syndrome, could not get enough of her support groups. “I’ve been known to be involved with 2 or 3 groups consecutively. It gets me out and keeps me grounded!” Logistics are important, too. For some parents, meeting weekly or every other week works well. For others, that is too overwhelming and demanding. When getting out to the support group becomes daunting, challenging and stressful, it is time to reassess and ask if you have outgrown the group and should be in the market for another. If you are on a tight schedule and concerned about the time commitment, look for an open-door group, one that does not meet too frequently. Local ARCs, PACs, and Family TIES coordinators are great resources for finding local support groups.
So what is one to do if still unable to find a support group with a good fit? Just like a pair of jeans, support can be custom-made! Visit our Regional Support Listings or call your Family TIES Regional Coordinator to talk about support groups in your area or starting a group of your own. You can arrange for a one-to-one Parent-to-Parent support match by calling Family TIES at 1-800-905-TIES!