Raising Ganga – A Middle Chapter

“Raising Ganga” should be a book one day.  This is just a middle chapter.

Today we were driving to Apollo Hospital for Ganga’s check-up, I kept thinking of the harrowing and frightening drive there just eight days earlier, late in the night, as Ganga had thrashed, cried, kicked, yelled, and could not be soothed.  Whatever lingering doubts I still had about having wanted her in the hospital have now disappeared.  Ganga was clearly back with us, with her naughtiness intact.  We had some answers, but even more important, she was better.

I’d intended to post a blog when we brought her home.  I wanted to thank all the people who had written and messaged us on FB, and who sent their wishes, prayers, and told us of crossed fingers and toes.  Ganga loved hearing about their messages.  And I was immensely strengthened by the support.  Well, WordPress disappeared the post after I’d worked on it for seven hours. It’s taken me this long to put it together and add what we have learned.

CPSS-1542_WAs background, Ganga originally came to Shishur Sevay by the West Bengal Child Welfare Committee on 22 February, 2007 along with six other of the girls.  She was said to be 3-4 years old and weighed 7 kg.  She was floppy, unable to use her limbs or lift her head.  We received no medical information or history, other than the name of the hospital she had been prior to the government institution. Posts about her are listed in the Category “Ganga”

Last Wednesday Ganga became incredibly agitated and could not get through any of her classes.  She would be kicking, calling out, thrashing, laughing, crying…. and she was like this more of the day.  She didn’t want to use her eye tracker.  She was just miserable.  A few months ago we had started treatment for absence seizures.    Three years ago the neurologist disagreed even though the EEG showed changes indicative of epilepsy.  It took trips to three hospitals before anyone could sedate her enough for an EEG. Then a few months ago we started with new doctors, and initially she had major reactions to two of the medications, and was not any better.  So a month ago we took her off all meds, slowly, and she was relatively good for three weeks.  She again became miserable and irritable.  Then last Wednesday night we were totally unable to calm her down.  She had been unable to sit through classes, even Bengali class which she loves.   I felt helpless and afraid, knowing it wasn’t so simple to get medical care in the night. I didn’t want to be carrying this alone, and I was afraid I was missing something.

Ganga’s neurologist was out of town, but we were able to arrange for an admission, (we thought) which would mean we could have an EEG the next day.  We have no insurance, and the hospitals are eager to fill beds.  Once there we discovered that the ER team had to do their own evaluation.  After exam and routine blood tests they told us to take her home, that she was just irritable, and come back to OPD the next day.  I argued for her admission, and they said they could keep her for 24 hours but it would be in a general ward and no one could be with her and since she was thrashing about they would have to put her in restraints.   That refrain still haunts me, that they would put her alone, with no one she knew, and no one who could communicate.  So we got ready to leave for home.

Ganga and her Didi in the Emergency Room. Ganga was alternatively angry, frightened, and thrashing about.

Ganga and her Didi in the Emergency Room. Ganga was alternatively angry, frightened, and thrashing about.

Then the ER docs reached the doctor who was supposed to be the admitting doctor.  He told them that she had to be admitted to the PICU for 48 hours and in restraints.  No one could be with her.  No, we couldn’t have a private room.  Again, I said we were leaving.  The doc said, “We can’t let you take her.”  In the US this could be literally translated, so I asked whether he would call the police if I tried to take her out. “No, we won’t but you will have to sign that you are taking her against our advice.”

“I’m signing nothing.  I’m paying my bill and leaving with her.  An hour ago you told me she didn’t belong in the hospital, and now you say the PICU for 48 hours and NOTHING has changed except who you spoke with?”  I asked for the ER bill and then amazingly, they said she could be admitted to a private room and one person could stay with her.  I  lifted her off the bed just to demonstrate my ability.   In the end though, Purnima Massi and I both stayed.  The admitting officer gave us two passes, and we ended up on the Platinum Wing.  I was really worried about the cost, but I put the deposit on my American Express Card, and we were in.

Ganga thrashed in the night. They started an IV and said someone would have to hold her hand all night to make sure she didn’t take it out, AND, to make sure it didn’t bleed on the linens.  By 3 am they started a new anti-epileptic drug IV.  She just kept thrashing and moaning.  I would hold her hand and doze off through the night.  Sometimes she thrashed and called out.  I was grateful we were there.Holding her in the night, making sure she didn't rip out the IV.  There was a couch in the room, and Purnima slept there. By about 5 am we were sleeping and no one really bothered us for a few hours.

Morning rounds had a surprise for us.  The pediatric cardiologist who had evaluated her some years ago at Medica, and who had taken care of Tuni came with the other doctors.  He had been in the labs in the morning and heard someone talking about a patient named Ganga, and he thought it had to be our Ganga.  I was really thrilled to see him and his knowing us changed the atmosphere.  Now they understood about Shishur Sevay and about me.  The doctors all laughed now as i told my stories of how I had challenged the ER docs.  They apologised, and the head doc said, “I’m just sorry it happened to you.”  I said, “Don’t worry. It’s OK.  It’s my karma.”

I think the medication was helpful and Ganga was calmer when she woke in the morning.  Later on Thursday she had the MRI.  I was allowed to go in, and then invited to sit with the docs and watch through the glass and see the images.  Out in the hall they had said I couldn’t and Ganga looked at me fiercely.  I whispered to her, “Don’t worry.  If they insist on no, I’ll squeeze under the door or up over the ceiling and I’ll be there, even if you can’t see me.”  She grinned.  She understoodOn the stretcher about to go into the ambulance between MRI and EEG..   And what I said to the doc was, “I’m really asking you please to let me go in. I’m 72 years old and I’ve decided that having some peace of mind is really important.  I know she will be fine, but I will be at peace if I’m there and I won’t be if I’m sitting in the hall worrying.”

Friday morning she got her “naughty” back.  The nurse came in while I had her up sitting on the bed.  The nurse put the thermometer under Ganga’s arm, and turned away.  Ganga immediately raised her hand, watched the thermometer fall, and grinned. She had her naughty self back.

By now we felt there was nothing acute going on and it was time to try and talk with her by Tobii (her eye tracker device).  Purba came early with Ganga’s Didi, and they set up the Tobii.  Ganga usually prefers I not be involved.  She wants to talk to others.  So first on Tobii she chose all the people she wanted to come and visit.  She did NOT want to go home but definitely wanted everyone to visit her in the hospital.  The message bar at the top of the screen shows thumbnails of all the people she had chosen to come and visit.

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And then the doctors came on rounds while she was on Tobii, and so she spoke with them.  She asked, “Where do you live?”

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She next asked, “What do you do? “The doctor explained his work taking care of children.  It took him a while to understand she wanted to give him her hand, but he finally got it.  She is a patient teacher.

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When she then said, “Come again,” he laughed and said he thought it was time for him to leave.  What he said about her was that it wasn’t that Ganga wasn’t ready for the world, but that WE are not ready for Ganga.  He said she would have to teach us and I said, “that’s why she is here.”  He seemed startled and I just said, “Yup.”

We used Tobii much of the day, simply used the time  as a teaching opportunity.

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Most of the time Ganga seemed fine, but sometimes she was just miserable.  I have some thoughts about it all.

The MRI was essentially unchanged from three years ago.  For the EEG we only have a preliminary report that there were no spikes, unlike the one three years ago.  That’s good, if true, but even more important it means there is nothing neurologically major going on right now, and that is a huge relief.

They would have preferred we stay til Saturday morning, but I really wanted to get back to Shishur Sevay.  She had started the oral medication and was doing fine with it.   I wanted us home, in bed, waking up for Saturday morning Dance & Movement. We reached home by midnight.

A week later I’m even more certain about my thoughts.

1.  Since starting the medication she has had no staring spells or fearful looking at the distance.   So I think she was having absence seizures and this is the right medicine for her.

2. I’m certain she has Pseudobulbar Affect:  PBA is a neurologic condition characterized by uncontrollable, disruptive laughing and/or crying outbursts that are often contrary or exaggerated to the patient’s inner mood state.   Ganga still has bouts of uncontrollable laughing or crying, or a mixture.  Rani bit her hand and she started laughing and then crying and laughing, and couldn’t stop.   This has gotten worse over the past two years, but I’ve not been able to get the attention of the doctors on this.  Now I have their attention.  There is a relatively new medication, Neudexta, cleared by the FDA, and available in India.   PBA was part of what was going on last Wednesday.  We will begin treatment for this.

3. Ganga has often spoken up when girls have talked about finding their families.  She has insisted on joining the conversation, and what we can understand, she does remember her time before Shishur Sevay and she does want some sort of contact.   When she came, she would become really animated at the sight of any old people in white, reach out to talk to them, and puzzled when they didn’t seem to know her.  Records show she was in a hospital in Digha before transfer to the Government institution, and then to us.  When we were on vacation at Mondarmani Beach, we also went to Digha for a few hours.  She didn’t want to go, cried, pitched her body backwards.  We just thought she didn’t want to leave the beach.  When we finally left Digha, we realized we had been sitting along the water in front of the hospital where she had been that we put it all together.  Some records should be here in Kolkata but we have not yet been able to get them.  It will be a long process of trying to get the government to release the records, but we have to do that.  Searching for Ganga’s roots will certainly be another Chapter of “Raising Ganga.”

This has been a time of a lot of adoption talk, with Judi Kloper here, and then Reshma McClintock, an Indian adoptee with her film crew as she returned to Kolkata as an adult.  We don’t know what Ganga heard, or what she heard other people saying about them, or about adoption.  Both these issues, her past, and a lot of adoption/birth family talk may be why she is suddenly far more clinging and dependent on me.  We need to set up some Tobii pages for this.  This week all the girls talked about the areas they were found, and one remembered the village she was from.  It’s only taken eight years.  We will be putting up a map of West Bengal with markers from where each has come.  Ganga’s will be Digha.

5. Ganga is not at all at peace with her limitations.  She wants to talk and she wants to walk.  She is angry.  Last week she insisted on walking out the gate (she yelled at the guard to open the gate) and went in the lane and “chatted” with some of the local women.  I have video of it all.  All it needs is editing (and time).  Maybe we can skype with kids who have CP.  She wants a social life.  When she wanted to go to South City Mall, and we took her, she spent the time talking to sales people.  She looked at clothes but didn’t want to buy anything.  She misses school.  I can’t get her into any school here, but we have to find a way to create a better life for her here.  I hope one day to be able to create opportunities for her in the US, or Australia, or Germany, or elsewhere accessible, and more welcoming of people with disabilities.  I say this with sadness, including for the Indians who are equally upset with what goes on here.  Ganga is moving into the preteen years so we are dealing with hormonal changes.   When she was in school she always had a group of girls and boys who looked for her, talked with her, missed her when she wasn’t there.  Ganga wants to get married one day.  She wants a life like others.  In a staff meeting this week we talked about trying to pull together some kids just to take them to the mall once a week.

6. Ganga is a tense and stressed person.  She worries about tests, performance of any sort, and we need to find ways of her relaxing.  Her first real episodes of the PBA and absence seizures were when she was in school and had exams.  She needs to chill, but as we all know, that’s not so easy to do.  We have people coming to volunteer who do yoga and storytelling and I hope that will help her.

Looking back, I was afraid I was missing something medically.  I was just plain afraid.  As I write this, I realize how much I needed respite from sole responsibility for what was going on with her.  I needed to feel that help was a call button away.  And I needed to be able to focus on Ganga completely.    So I guess Ganga and I are both better.  We have some answers, and plans on how we approach her needs, and I have gotten some relief.

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Ganga is here to teach us……

 

 

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. 

Our Visual Voices – Via Widgit Software (c)

These are my thoughts as I finish the website, and explain our use of  Widgit (c) symbols in our work. First I ask you to read

OUR VISION:  A society where orphaned and abandoned children, those with abilities and disabilities are not segregated but are respected as necessary members of our society.

 It’s nice, with lots of honing of words and meaning in putting it together.  Is it memorable?  I’m not sure.

Now read Our Vision below,  illustrated with symbols, and you know exactly what I mean.  Hopefully it is more memorable.

More than 30,000 years ago, before our written language of letters and alphabets, we communicated in drawing and symbols, on mammoth teeth and bone, in caves, and probably many other places lost over time. These were our expressions of meaning, communications, aesthetics, our visual voices etched to last over time.

More than 5000 years ago, the Sumarians used symbols and drawings on clay to communicate, to express themselves, to tell and pass on stories to those who would follow. Art and symbols have never been replaced by written language.

Rather they have complemented each other.

 Symbols have become an accepted and integral part of communication in the disability community, as part of what is called assistive and augmentive communication, but at the same time acquiring a status of “lesser” than regular.  But symbols enhance meaning, add aesthetics, and add to the community of people with whom we can communicate. Shishur Sevay uses the language of Widgit for just these reasons.

The blog is my “thinking out loud.”    Our website will be Widget enabled in two ways.  First, we have a license to use the Widgit symbols on the website (Insite) and also here in the blog.  Second, there will be a way for symbols and spoken voice to appear when the cursor hovers over a word, called Point.

We have worked hard to have a site that is accessible to hearing impaired, visually impaired, and also the language impaired.  In a way I think of this as people who understand more by JPG than by DOC.  My minimal understanding was that the Apple frame was more based on image, on a form of JPG, and DOS on more linear byte building. (WikiMe requests info on this.)  One of our  older girls is severely dyslexic, still doesn’t know the alphabet or meaning of numbers, but she wins at memory games that require matching images of cards turned over.  For her, the use of Widgit symbols allows her to understand, to follow what is being read.  We’ve also used it in teaching English, using the symbols of up, down, in, on, under, etc.

But our biggest user has been Ganga, about whom I’ve written a lot before.  Currently she is in Class III in a regular school with the other girls, and is the only child there with motor disability.  Ganga is very bright and loves to study.  She makes sounds, but not words.  When the teacher asked all the children who had seen a globe, Ganga called out loudly.  In her class she was the only one.  How does she use it?

In this picture, Ganga is practicing her typing, and also learning what has been taught.  As the keys are pressed, the program voice sounds the letter, and then the word, and then the sentence.  So there is constant feedback visually and aurally.   And it is fun.  Sometimes she is naughty and presses many numbers, and then the spacebar and giggles as the voice tries to read off zillions, trillions, billions…  sounding like random syllables.

If you click on the link below you will see a story I wrote in Widgit for Ganga.  It’s about why she has a disability.  To me, the illustration makes the story what it is.

ganga cp story-2

I like the aesthetics of the Widgit symbols, the cuneiform markings, similar to the Sumarian writing.  (I just learned about the cuneiform aspect of writing today — the triangle shapes that are part of the Sumarian script, and some in the Widgit).  It is similar to Hieroglyphics.  I have a children’s story I wrote some years ago and I want to write it with the Widgit symbols.

I looked at a number of symbol systems before I chose this one.  It was a big decision as it is costly for the software and now for the licenses to use it on the website and this blog (if we can get it to work on the blog).  I want this site to be truly accessible, even as I struggle to define what that means.  But the challenge is also to make it accessible, including with symbols, without creating a “cumbersome” aspect that will cause the “normals” to click off the site.  Isn’t that what it always is with a minority (even if the minority is the majority)?  It’s about power in part, those with power not wanting to be “slowed down” or have their thinking or reading interrupted because of something useful or even necessary for those with disabilities.

What I like about symbols is that they are less ambiguous.  When I started using Widgit a couple of years ago, their symbol for orphan was a child, and no parents.  I talked with them and they made a new symbol, orphan with two children, one in a wheelchair, one without, and without parents.

But now that I look at it, I realize there is one more step in the creation of the orphan line of symbols.  For our children it’s not just the loss of parents.  If you look back at Our Vision, you will see a symbol of “community” but it’s that community, or society that our orphans do not have.  Yes, first is a loss of immediate family, but then to end up in an institution there is also the rejection, actively or passively by the community.  So the symbols really should be:

Understand now?  These are the girls we brought here. lost, abandoned, living in an institution, but nothing can say it better than the symbol  Well, I feel I’m closer to what I’m trying to say.  I’d be grateful for comments.

Widgit software (c) is at http://www.widgit.com.    We have the icon for the website and it will go up with that.  We haven’t been able to get Widgit working on the blog, or I’d be writing much more in Widgit.

This blog is my thinking out loud, and my conversation with  interested parties, whomever they may be.

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

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; ©)

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