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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.
GROUPS
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.
BLOGS
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
