If you haven’t seen the movie Catfish yet, I would highly recommend it. And, no it is not a horror movie despite what the trailer may imply.  (I won’t give away the ending, but you can see the trailer here:  http://www.youtube.com/watch?v=uJfaz_w7-f8 ).  The movie asks the audience to consider who we meet on the internet, who we are on the internet, why people might fabricate their identities, why it might be important to think about how we use the internet and how reliable the information is that we find there.

I have been thinking about this lately because of the many conversations I have had with parents in the last few years who tell me that they get all their support from other parents in forums and at disability sites on the internet.  At the same time, I see that many Lower Mainland parent support groups have stopped meeting as nobody is showing up any more.  I suppose it sounds a bit old-fashioned, but the best support I received as my children were growing up was from other parents I met in real life (or “rl”) who I met at parent support groups.  I do have a daughter with a disability, but the things I learned were much more thant just how to get the services our family needed.  One of the assurances that I get from meeting face to face is that the people that I am getting advice from are “real”, and who they say they are.

 Another thing that worries me about these various online parent forums that I have visited, and one of the main reasons I avoid them, is that they seem to encourage parents to focus on their child’s disability.   It is hard to find positive statements about children; instead we see posts like, “my son has hypertonic spastic diplegic cp, feeding tube, seizure disorder, mental age of two… blah blah blah”.  I find this so sad, as many parents seem to have this need to focus on the medical deficits and labels that their child has been burdened with.  Instead of talking about their wonderful loving child parents’ trade huge lists of acronyms for disabilities and treatments.  Who has the most disabled child?  Why has the most horrible life?  Who gets the least sleep?  This really flies in the face of what I know parents feel about their children, that they are children first, they are not their disability and that they are not a horrible burden to their families.

Finally, most of these advice forums are based in the United States and much of the information that parents are passing along will not apply to you if you live in Canada or British Columbia.

I guess I know that we don’t want to turn off the internet but I would hope that when parents are reading and posting on parent support forums that they avoid the pity parades or the medical “listers” and find a place to meet on-line that is meaningful, that supports inclusive environments and uses positive words and imagery to portray both children with disabilities and their families.   Oh, and watch Catfish, very cool movie!

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Open invitation to family bloggers:  BACI Family Services would like to invite everyone who has a family member with extra support needs to contribute to our family blog.  Do you know someone special who has made a difference in your child’s life?  Do you have a pet peeve?  Have you always wanted a forum to talk about your sibling’s future?  We would love to hear from you.   Email Carol Stinson at family.services@gobaci.com or use the contact us link on the blogsite.