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December 3, 2011 / paperkids

When two worlds collide

I’ll never forget the first time I saw Soma.  She spoke at the first autism conference I attended.  I didn’t know much about her at the time.  Emma was around three years old and I was feeling very desperate, very overwhelmed and extremely devastated by her diagnosis and my lack of anything I could seem to do about it.  Her words had all fallen away and she rarely looked at me.  There were a lot of speakers at the conference and a lot of information – it’s hard to keep up with the bombardment  of information out there about autism.  It’s an ever-revolving door of ideas and treatments.  But Soma was who I remembered most that day.

She had created a method called  Rapid Prompting Method and had a video of a girl much older, but similar, to Emma.  She was non-verbal and had some aggressive behaviors.  Watching Soma work with her and get her to communicate was fascinating and was another little seed that was planted in my mind.

Sometimes people ask me how Emma began communicating or what method we use.  My mind goes immediately to Dov.  It was his mother, Portia Iversen, who brought Soma and her son, Tito, over from India.  Portia had heard of Soma and Tito and was desperate to get Soma to the states so she could meet them.  Portia and her husband were on a mad search for answers and had subsequently  founded CAN (Cure Autism Now).  When she heard about Tito, her mind was blown.  Here was a child just like her son Dov – and he was communicating these deep and genius insights and writing this amazing poetry.  How could this be??!!

And yet in spite of the monumental achievements of CAN and the fact that I had become well versed in matters of science, I found myself confronted by something I was entirely unprepared to understand:  a boy named Tito Mulkopadhyay.    –  taken from Strangeson / Portia Iversen

Soma’s method of pointing to letters turned me on like a light bulb.  It just made sense to me the same way it must have to Portia.  Watching Soma work with Dov as he pointed out his first words on a paper letter board sent a thrill of hope and encouragement through me.  I was a sobbing mess at the computer. I downloaded the free IPM(Informative Pointing Method) method booklet on Portia’s website and began studying it.  I just knew that this was a door that was opening.  I had also just read Tito’s incredible book How can I talk if my lips don’t move .

I felt like God was slowly watering my seeds.

When I think of it, Emma was there too watching that video. She was there listening to me read Tito’s book.  She was always there and I know that she was listening.  I knew that it was encouraging her, too.

And then, to my complete amazement, it happened for us.  The very next day after I watched Soma and Dov, I would experience my own miracle as I watched Emma type out on the keyboard for me for the very first time.  It was during our daily typing practice to type her name out.  I had my hand lightly on hers and I began to ask her questions.  It seems so simple, yet it was the most incredible, life changing thing to watch her type out yes when I asked if she wanted more candy.  It was like a connection we had never had before.

This video from 60 Minutes is several years old.   Today Soma resides in Texas and runs her non-profit Halo.  One day, I plan to take a trip to Texas and take her course on RPM.  Portia came out with her book, Strangeson several years ago.  From time to time, I check on her website.  The most recent post is a much older teenage Dov getting a new hair do.  Does he know that I think of him?

I wish I could tell these women and their sons how thankful we are for their contribution to our life.

Emma is still working toward complete independence in typing.  I’ve come to realize that even when all our worlds collide, none of us are alike.  I am not like Soma or Portia.  And Emma is different from Tito who is different from Dov.  But we can learn from one another.  We all have a voice and dreams which might be  the only truth I know about autism and maybe the only one that really matters.  If I could lend my voice to say anything to parents and teachers out there, I’d like to say

DON’T GIVE UP!!

 Sometimes it seems like there is nothing we are capable of doing for our children.  But I really feel that the best thing we can do  is continue to believe in them and encourage them.  All things are possible with faith, hope and above all, LOVE.

3 Comments

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  1. MOTSL / Dec 3 2011 12:27 pm

    I don’t think I’ll ever tire of watching this video; how encouraging it is and how amazing to watch people and circumstances mesh together to bring hope to others. And thanks, again, for bringing your insight in sharing information with others, Sabra.

  2. AutisticSpeaks / Dec 3 2011 3:11 pm

    I had never seen that video; incredible, Soma and Tito and all the Somas and Titos out there fighting to find their voices! I ordered two of Tito’s books from the library… can’t wait to read them!

    • paperkids / Dec 3 2011 5:14 pm

      And I can’t wait to read your book, Lydia!!

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