Ganga Speaks With Her Eyes!

Ganga with her Tobii eye tracker

Ganga with her Tobii eye tracker

Ganga’s eyes focus on the screen, then on the boxes, and when she holds her gaze long enough, the words are said via digital voice.  This is her first day working with the materials prepared for her.  But given her dry humor and tendency for being naughty (or cheeky as our Australian friends say) this could well be what she intended to tell us. “Do something else, bored, bored, bored,” became her first words.

Buying the Tobii was a leap of faith.  I’ve had my eye on this type of technology for her.  She has worked with switches, head pointers, and specialized keyboards, but always hampered by her severe motor limitations. The eye tracker offered the ability to operate  windows  in addition to the specialized communication software.  She could eventually learn to surf the web, without ever having to use her hands or fingers.  This version of eye tracking, originally used for gaming was said to be less sensitive to head motion.   Buying without any chance to try it felt reckless.  But I kept coming back to Ganga’s current and future needs to break out of the isolation of her disabilities.  Among all our girls, she is the one who tries the hardest, loves to study the most,  cares about geography, history, and news, and understands humor and sarcasm.  I placed the order with the company in Mumbai that sells the product made in Sweden.  Apparently we were their first customers for the Tobii PCEye.

Soon after we purchased the Tobii but before it arrived, we had an amazing group of volunteers from Equal Health in Australia, all connected with early childhood education and disabilities who came to help and guide us for a week.  Their leader Kristy Tomlinson contacted her friend Amy Litton of Independent Living Center in Nedlands.  Amy Litton is a TRAINER in the use of the Tobii as well as other assistive devices.  She and her team enthusiastically offered to help Ganga.  Below is a Skype screen shot of speech pathologist Amy Litton and occupational therapist Jessica Rigden learning about Ganga.

Amy Litton and Beth on Skype talking to Ganga and me about the Tobii

Amy Litton and Jessica Rigden on Skype helping Ganga with Tobii

This is a clearer picture of the Tobii PCEye Tracker, the little black device at the bottom of the screen.  The red dots are where the infared lights connect with her eyes in order to operate the laptop.

the eye tracker on the laptop at the bottom of the screen

the eye tracker on the laptop at the bottom of the screen

This is one of the personalized pages Amy and her team prepared for Ganga.

The partially complete red circle in the

The partially complete red circle in the “I love to dance” box shows that this is where Ganga’s focus is. In the picture below you will see the circle complete and the voice synthesizer will have said, “I love to dance.”

The red circle (incomplete) in the

When the circle is complete, namely when she had held her gaze long enough, the sound will play.

In both the above pictures there is a side bar on the right, representing eye tracker control of mouse functions.  Between substituting mouse functions and using the screen keyboard, the usual Microsoft and internet work can be accomplished.

A keyboard can be called up at any time and operated by eye tracking.  Ganga has already typed GAN and is focusing on the G. The red circle fills as she holds her gaze.

Ganga has already typed GAN and is focusing on the G.  The red circle fills as she holds her gaze.

Now Ganga has already typed GANG and is focusing on the A. The red circle fills as she holds her gaze.

With GANG already written, she adds A.

Ganga's eyes do speak.  Here she is saying that she has done well and deserves a photograph.

Ganga’s eyes do speak. She is telling us that she has done well and now she deserves a photograph.

Good work Ganga.  So many of us are waiting to hear what you are thinking, what you dream about, what you want us to know about yourself, and some day to read the book you want to write. 

Seven Years Together at Shishur Sevay

A few nights ago I dreamed I was trying to put our records together and that required that I establish records on the moon first, which I did, and then replicated here at Shishur Sevay. I kept asking, “How can I explain to people that I had to get this done on the moon first?” I’m working on a blog post about the past seven years here. Maybe that’s the answer as to why the dream.  I’m feeling a lot of pressure, trying to write about what it’s been like, and probably holding back a lot on what it’s really been like. I’ve been to the moon and back…. that’s what was required.  It was cold and lonely and void of vegetation.

Shishur Sevay today is thriving.  It’s glowing.  It’s what I’d dreamed it would be. So here is the blog I was working on before I went to sleep, before I understood I’d been to the moon and back.  The process of building Shishur Sevay has been brutal, but the product is beautiful.

Seven Years Together

A picture of all the girls of Shishur Sevay and Dr. Harrison on her birthday

My Girls of Shishur Sevay and Me

The first twelve girls came to Shishur Sevay in February 2007, so for me this time of year is always one of reflection.  They came with an array of abilities, disabilities, and medical conditions.  All came with scars, emotional and physical.   They all were socially and educationally deprived, and had led lives filled with violence and deprivation.  Then at some point, each had lost everyone and everything: parents, siblings, extended family, and community, and eventually were placed in a government institution.  These are the children I’d sought, the ones considered not adoptable in India or abroad. They had been rejected by adoption representatives before they were sent to me for “rehabilitation” by Order of the Child Welfare Committee.   With adolescence, three of the girls became too unmanageable, with behaviors that put us all at risk. My decision to return them to government care was very difficult, and taken after many attempts over the years at various treatments and therapies, but necessary if Shishur Sevay was to be the safe place it is.  I had not expected ever to have to do that.

This year we started an inclusive school, Ichche Dana Learning Center because educating the girls in outside schools “did not work.”  The girls are beginning to put their efforts back into learning.  There were several factors interfering.  One was their early deprivation that left them far behind their classmates, while they were also older than their classmates.   Science is now giving us information on the effects of this early deprivation.

http://ecceportal.in/index.php/news2/136-more-talking-longer-sentences-help-babies-brains

At school the girls were seen as “different” because of their origins, and they felt different. Teachers lowered expectations; some gave them false high grades because they “felt sorry” for them.  Others ignored them, or queried them about their origins and caste. The Indian system of rote memory left them too frightened to learn anything but the paragraphs they had to memorize and give back, an impossible task when you don’t have the foundations of language, any language.   Ideas of self-discipline, hard mental work, and delayed gratification were as foreign to them as I was..  If work was hard it scared them.   They lived in fear.  It was time to bring them back and start anew, which is what we are doing and so far it is working very well.

Girls taking notes at the botanical gardens.

Taking notes at the Botanical Gardens

doing a presentation of trees of botanical gardens

Presentation about the trees of Botanical Gardens

The girls did a presentation of their work to volunteers from Equal Health,a team of Australian educators who were with us  in January.

Ganga Presenting

Ganga Presenting

Ganga and Bornali both presented by use of the iPad and the recorded script.

This is inclusion.  Everyone is able to learn something and to contribute.  Some of the coursework has to separated by level of understanding and skills in reading and comprehension, but the ideas and subjects and methods of presentation can be done by all.  And our children with the most severe disabilities, even if they can’t join in, they still make wonderful and appreciative listeners.  Everyone has a role.

Our eventual plan is for the girls who are able, to enroll in the National Institute of  Open Schooling which will allow them to sit for Class 10 and 12 examinations. We will send to college those who are able.  We will look at job training for others.  Some of our older girls may need to stay with us.  I’ve promised marriage to those who want.  We talk about dowry because it’s integral to the world they live in.

This year though, I find myself thinking a lot about our girls with the most profound disabilities and looking at the therapies and methods that have and have not “worked.”  The children thrive on attention, especially one on one!  If I were in the US, I’d be thinking about finding teenagers to just play with them, floor play, songs, things I’m familiar with.  I haven’t found that here.  My experience (and I add the caveat that I can only speak for my involvement with families since 2000) is that teenagers do not “babysit” or work outside their families.   Play happens sometimes as “therapy” by professional therapists, but that means it’s a very limited and expensive resource. As for cognitive tasks, my little ones would rather be dancing.

She'd Rather be Dancing

She’d Rather be Dancing

One day I will tell the story of what it took to get here, but Shishur Sevay is a wonderful place now and that’s how the journey must be seen.

CWC (Child Welfare Committee) Finally Coming For Inspection

Our last contact with CWC is described in the post “Foes Into Friends” http://shishursevay.com/2013/04/03/foes-into-friends/

Before that we were told we would be investigated for violation of child labor laws because of a complaint by an adolescent who had become too violent for us to manage.    On Friday, Seema Gupta, our Board Vice-President stopped in at CWC to find out the disposition of the girl who had made the complaint against us, as she was still officially on our roll.

Then the officials asked Seema, “Would Madam please take more children?” and Seema explained that we have no room or resources for more.  Then they asked, “Would Madam build a home for boys with disabilities?  We have the funds!  We would help her do it!”  Seema said they had to visit first because only then would they understand what Shishur Sevay is.  So they are coming tomorrow.  We will pick them up and bring them and then take them back.  Seema will take the day off from work.  The girls will stay home from school.  But it’s not about what’s wrong with us.  It’s about their wanting help.  They do remember when I brought the boys from Aunty’s Home and they had no place to put them.  They still don’t.

Would I do it?  I will if I can make it good, as it should be, and inclusive in some way, and with lots of recreation.  I think that’s one of the worst problems for children with limited mobility and other disabilities.  They don’t get to wear themselves out with fun, exercise, etc.  I want a pool, enough for them to experience weightlessness…..

I’m a dreamer.  I’m already planning it in my head, thinking about building plans and accessibility.  I already looked up construction costs for commercial buildings….  I would have two wings though, for boys and girls, but for the lower ages I’d keep them together.

I want to start with an advisory group of people with disabilities….

I’m so glad I put down the outside tiles.  I’ll have more pictures later on but instead of ramps looking separate, they just blend in, and look like rolling surfaces.  Before we chose the tile, we had Sudip try out several, with water over them, to see which ones gave his crutches the best grip.

The “client” should always be the end user.  Schools should be built to meet the needs of students, hospitals to meet the needs of patients, Shishur Sevay to meet needs as we discover them, and then find the best solutions.

Well, this may all be too much for the people coming from CWC, but I’m fired up and looking for ways and funds to make such a thing happen.  I like the idea of building what is needed, as defined by the community.  But just in case anyone is worried, Shishur Sevay and the life of the girls, of our family will also continue.  This is home, my home and theirs.

Outside feels part of the house now, a nice place to be, to play… safe from slipping.

Ready for School, with her bag and her sister's shoes.

Ready for School, with her bag and her sister’s shoes.

Well, you can see the tiles!  On the left, the black area is Jelly, the dog.  Actually the side there is flat for her bed.  Before we made a bed for her she would stretch out across the entrance, even when someone in a wheelchair was trying to go through.

Tiles going up, across, an down.

Tiles going up, across, and down.

I love what we have been able to do.  I’m looking forward to the visit.  I’ll let you know how it goes.  I’m prepared for the best and the worst.  It’s just how life is.

When Good Gets Even Better

Prelude to this post:  One of the girls came to me today right after I had taped together the slightly broken plastic vegetable bin in the refrigerator.  She said, “Mummy, I broke the box.”  I asked her what she was talking about, and then realized she meant the vegetable bin.  I said, “I thought I broke it the other evening!”  It’s true, as it gave way when I pulled it out.  OK, the amazing part is that she wasn’t afraid to tell me.  You have no idea how different this is.  The girls really feel safe with me these days.  So much has changed!  Shishur Sevay today is how I imagined it would be when we started in 2006.

Back to the blog as I had started it:

Another stretch on non-blogging.  Well, I did blog, four hours one night when I stayed up determined to write about what was going on, but as we say here, I guess it was not destined to be published.  I saved it multiple times as I worked, and as I always do, and then in a moment it was gone!  Poof!  Everything was gone except the title and the first sentence, which I had even changed.  The title was:  Tough Decisions: New Beginnings.  The surviving first sentence was, “I have had to make some very tough decisions in the past few months.”  That post is lost, but the outcomes of those decisions are really wonderful:  “When Good Gets Even Better.”

In the picture below I’m having a meeting with the current massis.  This is the most dedicated group I’ve had.   We are working out what needs to be done, and we are also talking about some of the communication that occurs.  What’s notable is the sense of relaxation, on their part and on mine.  Two significant changes have occurred.  The girls they were afraid of are no longer here ( Tough Decision).  Staff who tried to “manage me” on their behalf are not here.  I really don’t need to be managed, and I’d rather deal with what is going on than have people holding back until “the time is right” to approach me.  With less “help” I’m finding it easier.   It’s nice!

Meeting with our childcare workers -- the massis

Meeting with our childcare workers — the massis

The children are really blossoming.  When bullies are removed from the situation, all kinds of unexpected things happen.  Kids almost in hiding, suddenly emerge, and blossom.  They walk differently, smile more, pitch in more, express interests and want to do things.  The house suddenly isn’t divided into territorial lines I didn’t really know existed.

Usually time will pass and I’ll suddenly be aware of that used to happen, but doesn’t anymore.   The children with disabilities frequently had scratches, little ones…. but there was no way to know how they happened.  These things don’t get picked up on the CCTV; no one will admit, or report, even if they know.  And I try to recognize that children with mobility problems, and spasms, may get scratched in the course of bathing or toileting.  A couple of weeks ago I suddenly realized no one was bringing the kids to me with scratches… It just wasn’t happening.  I go to sleep earlier because I’m not just trying to hang on to the last few quiet minutes before the battles of the morning.  There are no battles.

The full and complicated range of abilities.

The full and complicated range of abilities.

Here is the beauty of our life here.  The older girl is in an English medium school in Class VI.  She will be having tympanoplasty in the near future.  We have another consultation Monday.   Kalpana in orange is working on a Dora the Explorer game on the iPad.  She is getting intensive speech and language therapy for her developmental delay. Ganga is watching and if she reaches out, one of them will give her the iPad to touch something.  We live together, play together and take care of each other.  When we were pulled constantly by crises of violence and destructiveness, evaluations for non-emergency problems kept being put off.    We won’t take more kids until we have our current girls all settled and cared for as I had imagined we would.

When the girls first came in 2007 I planned for the kinds of evaluations I would have done in the US.  But within weeks, we faced a crisis where the government wanted me to take more children, non orphans.  When I said no, they threatened to close us and take back the children.  Our license was not renewed for two years and then after many appeals.  I lived hour to hour afraid to leave because I didn’t know what would happen.  I remember when Bubbi’s calf was sick and I knew it was serious, I didn’t go, didn’t get one more vet, let the people caring for him do the best they could.  It was a day’s trip and I made a decision.  The kids came first.  Bubbi’s calf died.  Of course the next day the girls insisted I make a brief visit to Bubbi because she would be sad and would want to see me.

It’s not that everything is up to date… we are late in filing some papers, but it’s not crisis.  The home is not crisis ridden.

I remain so touched by the love shared especially between the older girls and the children with disabilities.  They radiate happiness and love.  I can’t imagine anything better.

Love and Joy among the children

Love and Joy among the children

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