Posted by Kristal Louie on Fri, Dec 04, 2009 @ 12:05 PM
What makes a group supportive?
When you put "spina bifida support group" into your Google search engine, it's easy to be overwhelmed by the links. How do you know which sites are providing you with good information, good support? If a site pops up first on the list, does that mean that it is the best? Not necessarily. Here's my attempt to take some of the guess work out of it. In the end, it all depends on what makes you feel supported; if it is medical advice from an expert, or if it is somebody else who is going through the exact same thing, hopefully you find it. I am a personal believer in word of mouth as well, so ask somebody you know, and if that doesn't work, then read on.
Daily Strength often pops up as the first link on Google search. The Daily Strength Spina Bifida group is just one of more than 600 online Daily Strength communities. Daily Strength has an expert panel to answer your questions. The panel members are experts in their own field, but not necessarily experts on Spina Bifida, as they serve the entire Daily Strength community. The panel includes an ophthalmologist, cardiologist, nephrologist, marriage/family therapist, pediatrician, internist, fertility specialist, as well as other experts with vast knowledge in their fields and, most importantly, an expert mom. Daily Strength does require you to register as a member before communicating, but signing up gives you access to hundreds of other individuals with Spina Bifida. One of the features I liked the most is the members in need section, people who realize that they don't have to be alone and are reaching out. You might be able to share your story to let them know they are not alone or just empathize with them. Sometimes just having somebody listen to you is one of the best forms of therapy out there.
Sometimes the 2nd link that pops up is the Yahoo group Spinabifidacentral. There are over 2000 members. Unlike Daily Strength, there is no resident "expert" panel to answer your medical questions; however, you may not be looking for medical advice. Plus, who says you have to have a medical degree to be an expert? Often experience makes a person an expert. Without signing up, you can take a peek at what some of the most recent messages are, but you will have to sign up to post a reply or a new comment of your own. There may be many more features available to members only. If you happen to be a member of spinabifidacentral, please post a comment to let us know!
The Spina Bifida Family Support often pops up 3rd in a search. This group was started by a couple in Indiana who raised a son with Spina Bifida without finding another family to connect with. Although the site has a lot of Indiana specific information regarding resources, they also have a lot of information on various topics that may be of interest to any parent, such as what you should know for your child's IEP or bullying. This webpage seems to serve the purpose more of being a resource (last updated 2006) and less as a dynamic online support group, which Daily Strength and Spinabifidacentral provide. However there are several families that post their contact information and are ready to hear from you.
The Spina Bifida Association's Parents ListServe is also an option for getting support, exchanging ideas, resources, allows for debate, and general discussion. To add yourself to the ListServe send an email to: SBParents-on@lists.sbaa-communities.org . Leave the subject line and the body blank. To receive the digest version of the list rather than each individual message, send a blank email to SBParents-digest@lists.sbaa-communities.org
Going to Family Village will provide you with several different types of resources, those specific for online connection, or those pages for information. It doesn't look like much, as it lacks jazzy graphics and flashy icons, but it tells you what is out there. Check it out to see what grabs your attention and please post what you find on our blog site.
Kristal
www.sbgenetics.org
support@sbgenetics.org