Good support is essential to the survival of families of children with special needs. While friends and family may provide much-needed back-up in many areas, perhaps no one can offer emotional understanding, information and advice as well as people who are in the same boat. Support groups -- where parents can gather to discuss specific disabilities, to compare specialist or special-ed war stories, to strategize or to vent -- can be wonderful tools, but they can also be excruciating time-wasters, as anyone who’s been trapped in a room while one malcontent rattles on and on and on can attest. Are support groups right for you? And which kind will serve you best?
IN-PERSON GROUPS. Often hosted by organizations in your area and conducted in rooms with sofas and coffee, in-person support groups allow parents of children with similar special needs to talk face-to-face, sometimes with the assistance of a counselor, on a regularly scheduled basis, perhaps once a week or once a month. The sessions may take place at the same time as your child is receiving a service, such as early intervention or social-skills training.
Best if you:
• Need some hugs and hand-holding
• Feel more comfortable talking than typing
• Are looking for local contacts, referrals and networking
• Crave conversations with adults
Bad if you:
• Have trouble tolerating difficult people
• Want solutions more than sympathy
• Are uncomfortable sharing personal details with people you might see at the supermarket
• Have trouble getting childcare
Bottom line: Like friendship, in-person support groups demand a fair degree of tolerance for opposing viewpoints and a willingness to listen to other people’s problems as well as your own. And also like friendship, they may be hard to abandon gracefully.
Next step: Your state’s Parent-to-Parent Program may be able to hook you up with a support group, or check with your early intervention provider or school district special education department.
E-MAIL GROUPS. Ranging in size from a handful of correspondents to thousands, e-mail groups allow members to exchange e-mail messages through a central list server. Lists generally focus on a specific topic or disabilty, and although some draw members from a particular regional area, participants are more frequently scattered far and wide. Members use their real names and e-mail addresses, and often share information about their children and families in the signatures of their messages.
Best if you:
• Need to steal time when the kids are in bed or you’re at work
• Feel more comfortable typing than talking
• Want to hear from large numbers of people
• Like a sense of community, but not necessarily in your community
Bad if you:
• Have a small e-mail box; active lists can send out hundreds of messages a day
• Are uncomfortable sharing personal information with strangers
• Get hurt easily by blunt e-mail disagreements or moderator smackdowns
• Have specific needs but not constant ones
Bottom line: Less personal than on-site support groups, more personal than message boards, e-mail lists offer a comfortable middle ground -- and best of all, you can filter out all the messages from that loudmouth you can’t stand.
Next step: If you think e-mail lists offer the type of support you’re hoping for, search for your topic of interest at Yahoo Groups, or take a look at the Children’s Disability List of Lists.
MESSAGE BOARDS. Also called forums or bulletin boards, message boards offer maximum anonymity. Usually you can make up an alias for yourself, post without including much personal information, then stay around if you like the company or disappear in a flash. A community may form over a series of posts or a popular topic, but members may drop out for months without notice. On the other hand, experts may drop in for a time to answer questions and make personal contact with readers.
Best if you:
• Have limited access to the internet or e-mail, or time to spend on it
• Feel uncomfortable sharing your e-mail address or personal details
• Have a specific question you want to reach as many people as possible
• Want to avoid commitments
Bad if you:
• Like to keep copies of messages for future reference
• Have a slow computer that makes maneuvering through message threads time-consuming
• Enjoy being part of a group
• Need to be sure your messages are seen and responded to
Bottom line: Message boards let you meet a wide variety of people, from fellow parents to well-known experts, and interact as much or as little as you like. Of course, the people you’re meeting also have the option of interacting as much or as little as they like, and maybe less than you’d like.
Next step: If you think message boards offer the type of support you’re hoping for, look no further than the forums here at about.com . In addition to the Parenting Special Needs Forum, you’ll find a Reactive Attachment Disorder Forum, Autism Forum, ADD Forum, Pediatrics Forum, and many more.