I’ve talked about the special needs world during public speeches and here on this site regarding a constantly changing face of the community. Social networking is a huge reason why so many more families and members of the special needs world can connect with each other. I have learned SO much from so many other parents and special needs adults. I wouldn’t be the advocate I am today without social networking.
But there’s another side of it. It’s not very pretty. It’s a side where some people think it’s fun to abuse the respect and kindness that is easy to make in an online world when you may not see every person face to face. Heck, those avatars and photo albums may not be who that person says he or she really is. We all crave the ability to connect, but we also fear anyone who might be suspicious. I analyze each person who “likes” Born Just Right on Facebook. If I see red flags, I don’t allow that person to participate with the page. I rarely block people. But I’m not afraid to protect my community.
The ugly side of social networking means as a parent, I’m constantly questioning who is talking to me. I constantly analyze conversations from afar inside the special needs world and assess if that person or organization is real. It isn’t always easy to be sure. That’s because new groups and pages and conversations are popping up across so many different communication tools. That’s not unusual. The challenge is I personally feel the need to join them all just to make sure I can offer knowledge. For some reason, I hate knowing a parent or a child is growing up with information that may lead them into a direction where he or she might not feel comfortable in his or her environment. I feel like I’ve spent a lot of time connecting with supportive organizations. I’ve learned a lot of lessons along the way with my child. And I feel like I’ve built a really knowledgeable support source so when I come up against a challenge I’ve never faced, I probably know someone who has the answer. Maybe it’s my journalism background, but I hate it when misinformation is considered correct. This year I decided I needed to stop feeling like I have to inform every conversation I find that is misinformed… But when I can, I offer to help.
Every once and a while someone pops up in the limb difference communities who seems pushy or opinionated and not open to different perspectives. It’s hard to watch. But it’s really hard when anger is the response to logic. That’s what has happened this week after a new Facebook group appeared a week or two ago that focuses on limb differences. Hundreds of parents of limb different kids and limb different adults joined. It seemed fun to share photos. But then concerns came up… And a quiet murmur of concern rolled along in private conversations online. It’s an uncomfortable process. But it’s also challenging to know how to handle something like this when there are so many tiny groups and pages emerging online. I wonder if there’s any way to create a centralized hub… while all parents can feel comfortable to build the type of support and networks they want. I try to keep track of blogs on this site and share groups and organizations that are interesting and supportive on the Facebook page. But I have really no idea if I’ve found and interacted with them all. It’s kind of a crap shoot. Hopefully you join an informed organization that is full of people with all kinds of perspectives: families that have prosthetics and those who do not, families that work with physical and occupational therapy, families that haven’t decided what to do and others who are focused on specific goals… Adults who have been there and done that. I could never tell any parent how to raise their limb different child. I’m still figuring it out myself. (And I expect I always will.) But I do want to say that I hope I can continue to keep an eye on the community. I care about it a lot. And I hope we can all band together and continue to help each other out any time something appears inappropriate.