Let the Internets Soothe and Support You
By Shannon Des Roc... on September 08, 2009
BlogHer Original Post
Are you feeling lonely, isolated, or misunderstood as a result of having special needs factors in your life? I truly hope not, but if so, please know: you are not alone. Your people are out there, waiting to meet you, support you, understand you, offer you advice, and help you expand your knowledge, expertise, advocacy toolbox, and awareness of your rights.
Where are they? Online, of course: in forums and groups, in blogs, and on Twitter. I have met some of my dearest friends online; some of whom I've grown to know and love in the tangible world, and some of whom are no less dear to me though our relationship remains digitized. Here's where to find those missing pieces of your own.
Yahoo! groups are email-based, topic-focused online discussion forums (Google and Windows also offer groups, but I've found them less robust in content, and population). I belong to more than a dozen Yahoo! groups, including my local special education PTA, as well as both regional and city-specific lists for parents of children with special needs.
Groups are a convenient way for newbies to connect with veterans, to access mentoring and avoid reinventing any wheels. They are also good for sharing information, announcing events, brainstorming, and -- for groups that have explicit privacy policies -- blowing off steam in a safe space to an audience that understands your frustrations. While you may witness occasional spats between group members, as long as you personally adhere to online etiquette guidelines, you can sidestep most unpleasantness. (After years of conditioning, I am now able to walk away from all but the most delectable online bait -- quite an accomplishment for a natural hothead.)
If you search Yahoo! Groups for information on specific special needs topics, you'll find more than 4,000 groups listing autism, 3400 that list the word Deaf, 700 for Down syndrome, 500 for cerebral palsy, 300 for dyslexia, 200 for sensory integration, 60 for Prader-Willi, and 20 for selective mutism. Trust me, your people are out there, be they autistic self-advocates, cerebral palsy moms, advocates for people with developmental disabilities in India, Mormon autism support networks, Fragile X parent support groups, Jewish special needs forums, or English speaking expatriate families living in the Netherlands with a kid with autism.
Once you join a group, be sure to fine tune your messaging options so your inbox doesn't explode: Do you want every message coming to your mailbox? Do you want a daily digest? Or do you prefer to browse messages on the group web site? All three options are available.
Final groups note: I would be cautious about joining an unmoderated group, as those message boards frequently fill up with nasty spam messages.
I have been blogging since 2003, mostly to process the many meanings of having a child with autism, and also to share the techniques and approaches we've used to help my son Leo learn, socialize, and become more comfortable in his not-always-compliant body. After six years and more than 2000 entries, my blog is a record not only of what I've learned, but how my opinion on autism approaches and attitudes has changed over time -- and that record is available to anyone with an Internet connection.
If you browse my blog, you'll see that I used to rave about "autism triggers," and obsess about cures, whereas I now focus on my son's wonderful self and soul, and on supporting him in his quest to be the best Leo he can be. This attitude transformation, and the result -- I'm a better parent to my son -- were strongly influenced by the blogs I read, and the conversations I've had with commenters on my own blog and throughout the autism blogosphere.
Many great autism blogs deserve your attention, but if you need a starting point, here are three posts plus a video (via the much-missed Autism Diva blog) that I think all parents of children with autism and special needs need to see:
- Whitterer on Autism: Seven Tips – Coping mechanisms for parents of children who have just been diagnosed with autism
- JoeyMom: A Long Talk With Another [Special Needs] mom
- Asperger Square 8: For Parents
- Rory Hoy: Autism and Me (video)
Autism.Change.Org was the finest autism blog online, but it recently stopped publishing -- to the dismay of the autism community. Kristina Chew and Dora Raymaker, its dual autism parent/autistic adult contributors, were tireless sources of autism information, and role models for condemning injustice and discrimination without resorting to venom. Their archives are still available, but I miss my daily dose of well-written autism advocacy.
Twitter is a heady way to engage in real-time or delayed miniature online conversations. I consider it the best special needs and autism party in town -- I get to choose my own guest list, and parse social interactions at my own speed, 140 characters at a time. I LOVE TWITTER. I also love that I can set my BlogHer chatter status to update my Twitter feed, which will then update my Facebook status. Three parties at once!
My information pool increases geometrically with each four or five people I follow, so be careful: Twitter can feel like a direct information shunt to your brain, as though you're jacked into the computer like Star Trek:TNG's Data. If you feel overloaded, staunch your tweetflow by separating out specific Twitter feeds or groupings, via applications like Tweetdeck or Twhirl.
You don't have to follow individual Twitter users to learn about specific special needs topics -- you can search Twitter itself to find information, and then follow people who tweet about your favored subjects. I trend towards autism topics, obviously. If you do, too, and you'd like suggestions for twitterers to follow, here's a too-small list of autistic individuals and parents, friends, and advocates for people with autism. This list is mostly plucked from the first few pages of my follow list -- if you're not here, it's because I was overwhelmed by awesomeness:
- Sharon Davanport: http://twitter.com/a4aspie
- Michelle Dawson: http://twitter.com/autismcrisis
- Liz Ditz: http://twitter.com/lizditz
- Elise Butowsky: http://twitter.com/aspergers2mom
- Karen (AuRtist): http://twitter.com/AuRtist
- lhrandall: http://twitter.com/lhrandall
- Jocelyn Sloan: http://twitter.com/jsloan1223
- Adonya Wong: http://twitter.com/adonyawong
- Corina Becker: http://twitter.com/CorinaBecker
- Mary Day-Petrano: http://twitter.com/EquiisSavant
- FranAspieMom: http://twitter.com/FranAspiemom
- Kristina Chew: http://twitter.com/autismvox
- Bonnie Sayers: http://twitter.com/autismfamily
- Lindsey Nebeker: http://twitter.com/autismisarose
A final bit of advice about Twitter: holster your willpower and self-control each time you log in, as it is highly addictive.
If you are paralyzed by these varied community options, don't worry. You don't have to actively participate in any of them if you don't want to. No one will fault you (indeed most people will never know) if you prefer to lurk, observe, and learn. But groups thrive on member activity, bloggers love and blossom through comments, and the rat-tat-tat of a Twitter conversation is highly satisfying. I recommend engaging, if you're willing.
Regardless, your community is out there. It's waiting for you to find it. And if you don't find a community that works for you, start one. You can even use your other online communities to seed its membership, though be careful about activity that could be perceived as poaching. There is no reason for anyone to be lonely when the Internet is waiting to be your best friend.
A final request: if I haven't mentioned your favorite online special needs or autism resource here, please leave a comment telling us where to find it.
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