It Takes a Community

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by Merely Me
Wednesday, November 04, 2009

The phrase, "It takes a village" was made famous by Hillary Rodham Clinton when she was the First Lady of the United States.  This phrase was part of a book authored by Clinton entitled, "It Takes a Village: And Other Lessons Children Teach Us."  This book embraced Clinton's vision that parents and families do not operate in a vacuum but that we are all part of a greater whole.  The utopic dream is that we all work together as a society for the betterment of our children.  Going beyond political ideology and broad based macrocosms of economic and government systems let's just narrow this down.

Yeah, I believe it takes a village.  More specifically it takes a community. And more and more the "community" we are talking about takes place in cyberspace.  Just last week I took part in an e-patient conference where I talked about my personal experience as a caregiver, writer, and on-line community member and leader.   As an aside, I met Quinn at Health Central some weeks before my presentation and he gave me excellent advice about public speaking (find a kind face in the audience and focus on that person.  Thank you Quinn!)

Here is part of my presentation which I will share with you now:

My story starts with a diagnosis.  In the year 2000 my youngest son was diagnosed with a lifelong neurodevelopmental disorder.  Autism.  My son's diagnosis came as a shock to both me and my family.  I have a Master's degree in Special Education and over ten years of experience as a Special Educator.   Despite my educational background and career experience I still felt helpless to deal with the journey to come. I needed help and support so I turned to the Internet.  I joined several support groups for parents and caregivers who had children with autism and I can tell you quite honestly that these groups saved me.  I was given guidance about everything from teaching my son how to be potty trained to learning how to write an effective letter to get the best therapy and services for my son.  Through on-line support groups and blogs I could meet people from around the world all with the convenience of never having to leave my home.  I soon discovered how powerful the Internet can be to not only to gain support for myself but also for me to give that support right back to others.

What I have said here barely scratches the surface of the help and support I have received over the years from Internet support groups.  There were many nights when my son was first diagnosed with autism where I basically wept at my computer.  I read other parent's stories and found myself mouthing the words, "me too."  When someone would describe a small triumph, a first word, a point, or invitation to a birthday party, I would celebrate too.  My world was becoming larger and smaller at the same time.  It was larger in the respect that I knew that I was not alone.  There were so many other parents who were going through the same challenges with their children.  My world was also becoming smaller in that this support from these on-line communities allowed me to connect with others in a very real and genuine way.  I felt chiseled to my most basic and honest self.  People who were once just strangers became lifelong friends.