Shishur Sevay

Our Ordinary Miracle continues.

OMG, It works!!!!

Anjali has been my unofficial but essential long distance consultant in communication with our girls with disabilities.  She has sent articles about swallowing problems, and taken my concerns to her professors.  She just couldn’t get here sooner.  Almost a year ago I determined to have computer communication training for Ganga, Bornali, Rani, and Sonali — first in line because their communication abilities are so limited by their disabilities.  My main goal is to be able to understand what they are trying to tell us, to break the barriers between us and them regarding how they feel, what they think, what they most want us to know.  So in the last year I gathered adaptive switches and software, and we even played with it a bit.  A big obstacle was the lack of a computer lab and I had originally planned for two desktops and specially built tables.  But one day I tried out the software with the kids using my laptop, and realized this was even better.  I now have four laptops to use for teaching (I’m grabbing up entry level laptops because they come with Windows XP, not Vista).

In these pictures Ganga is actually STANDING in her standing box!  She has wraps around her legs and pillows around her to help hold her up, but the time standing strengthens her legs, and is energizing. 

The large round red switch is made so touching it anywhere acts like a mouse click.  She can use it with her hands (Anjali is demonstrating), 

or her elbow,

or even with her head.

They are making up a story together and later Ganga will tell the story to her Didis.  It must be a funny story.

That’s Bornali behind them in her standing box, sometimes watching, sometimes turning around.  She will have her time later. 

Uh Oh!  Someone has just made the mistake of thinking Ganga will share her computer time, But Ganga, whose eyes speak as loudly and clearly as anyone’s voice establishes the computer as hers! 

But, Didi’s are different.  They are always welcome (well as long as they look but don’t touch the computer). 

Ganga is working hard at the computer to show her story to her didis.

Clearly Didi is impressed and proud. Ganga is very happy.  Ganga’s joy, and our joy is all the more miraculous when we remember her two and a half years ago, February 2007.  She was 4-5 years old and could not hold her head up or move her arms or legs.  I keep wondering how she survived mentally/emotionally, given how expressive she is and how much she is so totally with us.

Here is a picture from the day we first saw them in the institution, the day we could not say no to any child who was given to us:

From left to right: Ganga, Rani, Sonalil, and Bornali

Photos of Shishur Sevay, Ganga and Anjali et al by Benjamin Melancon, with gratitude.