Ganga’s Disability Story… and other matters of the day

23 Aug 2011 Leave a comment

by Dr. Michelle Harrison in Assistive Technology, Cerebral Palsy, Disability, Ganga, Orphans, Special Education

Ganga’s Disability Story (click to open)

I am trying to put Widgit ©symbol language into the website that is being developed, and this blog.  It looks like I may not be able to do it in the blog.  But I was able to link a pdf file to the blog and it seems to work.

Ganga knows she has a disability.  In fact she knows she has CP, or at least she recognizes anyone else with CP.  I know from living and working with her, that sometimes she is very upset that she cannot do what other children can.  It is compounded by her constantly being seen in terms of her disability rather than her intellect.  The world of children, people, with disabilities easily becomes the world of caretakers.  The children sit and listen but cannot talk to each other, nor can they have any influence over the discussion.  Ganga wants to be with the older girls.  She wants to study with them, listen to their teachers, make comments, and even sometimes be naughty like the others.  I founded this home.  I live here.  I hire the teachers, but still it is hard to make this happen.  Ganga is happy with someone reading to her from an encyclopedia but she is often left with the group doing nursery rhymes.  I keep trying to find teachers for her, but also trying to balance a situation where some people think I’m out of my mind and imagining her intellect.  I’m writing this because it MUST be familiar to others.  Most of our struggles are fundamentally quite similar, wherever we are.

Ganga is learning to use a head pointer on the computer.   I am short of people who can teach or use computers.  Today the special educator was using a real mouse with a child with CP, simply taking her hand and pressing the mouse.  I hooked up the switches (I’m the IT dept here too) but then had to stop the teacher from hitting the switch.  You have to give the kids time to respond.

The rest of the day was spent dealing with a new crisis with the older girls.  They had begun receiving tutoring (called tuition here) in their school after it let out.  It’s a common practice.  But it seems the principal has forbidden the teacher to teach our children so we had to make other arrangements.  I can’t say more.  I don’t want the kids kicked out because mom says too much.  But if India is serious about corruption, it should start with the educational system which (in my opinion) is far more corrupt than the government and far more serious as the minds and futures of the children are at stake.  And it teaches children very early about the power of money and influence.

Ganga looks up to her Didi with CP

Ganga looks up to her Didi with CP

Here is the link again to the disability story I wrote for Ganga: Ganga’s Disability Story (click to open if you didn’t before)

It’s 11 at night here and I’m just going to post this and go to sleep.

(Widgit Software a product of www.widgit.com; ©)

Ganga and Bornali: Sisters Become Friends

03 Jul 2011 2 Comments

by Dr. Michelle Harrison in Assistive Technology, Cerebral Palsy, Daily Life, Disability, Ganga, Special Education, Uncategorized

Sisters
Ganga and Bornali

Yesterday afternoon only Ganga and Bornali were home.  Nine others had gone to an event and Rani was in the park for her afternoon walk.    I was home still recovering from my cold; teachers were gone… so it was time for some fun.  Ganga and Bornali had just been given misti doi (sweet yogurt) for afternoon snack, and per my instructions, I wanted to let them work at feeding themselves. Bornali takes her food very seriously and when the spoon became too difficult she did the only natural thing she could think of, which was to do away with the spoon and go directly to the source.

Bornali gets practical

Notice that not only has she gotten to the source, but she used her knees to tilt the tray upwards to bring the dish closer to her mouth.   A few years ago she did this with a puzzle piece.

Getting the Job Done

2008: Getting the Job Done

 

Bornali’s teacher was not happy with this. In the teacher’s mind, the assigned task was for Bornali to use her hands to pick up the puzzle pieces. But in Bornali’s mind, since her hands weren’t getting the job done, she used what worked for her. In her mind, the task was to pick up the piece of the puzzle. In yesterday’s task, Bornali’s understanding was that she was to eat without assistance and since she couldn’t get the spoon and her hand working right, she did what made sense to her. It seems to be what made sense to both of them.

Later in the evening Gangaand Bornali delighted in our showing the pictures.

Ganga working with her hand in 2008

The pictures from 2008 also show Ganga struggling with using her hands. I realized that she is no more able to use her hands now than in 2008. Her preferred means is her foot. Apparently she has figured out how to turn off the tv with her foot if she doesn’t like what is playing. For computer she prefers her foot.  Here she is learning from Dipak Ghosh, her role model

Learning from Dipak Ghosh, her role model

though we have just starting using a head pointer.

Hunt and Peck Ganga style

Ganga Goes Digital

16 Aug 2009 1 Comment

by Dr. Michelle Harrison in Assistive Technology, Cerebral Palsy, Disability, Education/School, Ganga

Our Ordinary Miracle continues.

0339-3821661749_1

OMG, It works!!!!

0332-3821659571_1

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), 

0314-3821666195_1

or her elbow,

0323-3821655555_1 

0318-3822461482_1

or even with her head.

0326-3821657547_1

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

0336-3822468246_1 

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! 

0340-3822469896_1 

But, Didi’s are different.  They are always welcome (well as long as they look but don’t touch the computer).  0348_1w

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

0349_1w 

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:

4 babies-1520-w 

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

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

Next Newer Entries

August 2026
S M T W T F S
 1
2345678
9101112131415
16171819202122
23242526272829
3031