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August 25, 2010 / paperkids


Recently, we saw Inception in the theatre.  One of the themes in the movie (don’t worry, I won’t give anything away) is the inception, or the beginning, of an idea.  I got to thinking about the power of an idea.  Of  how the seed of an idea once planted in your mind can take root and really change the way you look at something forever. 

I couldn’t help but to think of Sue Rubin.   By the time Emma was three, she had fallen pretty heavily into autism.  For the next several years, I was completely overwhelmed and dumbfounded.  How could I reach her?  Could she be reached?   Was she capable of understanding? …..

Then I saw Autism is a World, a documentary about a young woman named Sue Rubin, who was severely autistic.  First of all, at that time, Emma was the only girl that I really knew personally with autism.  And second, this Sue Rubin was completely nonverbal, seemed to have many repetitive behaviors and stimms, had also been diagnosed with MR (mental retardation) and appeared to be maybe even more severely affected by her autism than Emma was. 

And she was COMMUNICATING!    Her deepest thougths, hopes and fears were being expressed by typing onto a little keyboard. I could NOT believe it when I saw it!   I could feel my mind re-wiring with this idea.  This was the first person with autism I had ever seen communicating like this.  It’s one of those moments that I will forever remember as the beginning of the revelation that this could really happen for Emma.  It was a knowledge that, once I saw and knew what was possible , I could not ignore it.   It gave me hope for years to come. 

Each person with autism who has shared their voice and their story has contributed to the hope that has kept this idea alive in my heart and mind.  When I asked Emma, she revealed that reading Tito’s Mulkopadyay”s book out loud to her, gave her hope and the drive to keep believing that it could happen. 

Sometimes things are not always as they would appear.  I was reminded of Sue Rubin again at Emma’s back to school night when her teacher shared how he was so deeply inspired by her.   I wonder if she has any idea how much she’s contributed to changing lives, if only by planting a seed in the  mind. 

Just to be able to express thoughts, hopes fears – it’s such a liberation that we all take for granted.   My hope is that more and more support will be given toward the use of FC (facilitated communication) for these amazing individuals who have no voice. 

Sue Rubin attended college and has presented at many seminars.  There are transcripts of her speeches on her website.

I wish I could tell Sue Rubin what an inspiration she is and how her “words” changed my perceptions forever.

I was telling Emma about her and showed her some of the documentary.  I asked Emma if she thought I should post it and she spelled out yes.  I asked her what she thought of it.

Emma:  I am trying to tell the world about autism

Watch all 5 parts on youtube. 

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