Fumbling Through Raising Funds

I’m stumbling.  I know what I have to do and I’m not doing very well at it.  So I write, with two purposes in mind: 1. It may help me find my way out of the web I feel around me, and 2. I don’t think that fundamentally I am very different from others, and so when I have trouble solving a problem, I imagine there are others out there struggling with the same things.  I just do it more openly sometimes.  The third of my two reasons is that someone else might have some words to help me though this.

My goal for 2015 was to begin serious fund raising, building the future for Shishur Sevay because my personal funds are being depleted and I have to secure the future of the girls.  I’m guessing that none of you reading this are aware of my serious intentions because I think I’ve basically kept it a secret.

“It makes me feel like a beggar, too much like the lady on the street, body bent slightly forward, with her hand outstretched and cupped, saying, ‘Please, for my children, please.'”

To be honest, this is not all fantasy.  Asking for money leaves me open to a lot of painful comments and opinions, and when that happens it feels terrible and words invade my mind and dig and dig and I struggle for the words to pull me back up. Sometimes I go and sit with the kids, especially the little ones, just enjoying their presence, reminding me why I struggle so hard.  The big girls know something is wrong, but I don’t talk about it.  They have no idea that money is a struggle because I never wanted them to. Shishur Sevay is the only stable place they have lived and I don’t want them worrying, and we are in no way desperate, but it’s the long term that has to be secured. I’d like to build an endowment.  I get a small pension and social security.  When I die, those go.  And people think I don’t worry?  I started Shishur Sevay with a plan to raise about 8 girls to independence and I had the personal funds to do it.  All that changed when I saw the four children with disabilities, in the government institution, that no one would take, Rani, Bornali, Ganga, and Sonali.  I looked at them and said yes. That’s what disability does.  It upends plans.  It hijacks the future, but these children are the heart of Shishur Sevay, the heart of who we are, and they will need care for the rest of their lives, and the cost of the care that keeps them alive and full of joy is enormous, even in India.

The big girls do worry about my age and health. Reassuringly they once told me not to worry, that Andrei Dada (my son-in-law) would take care of them.  Yes, Andrei knows their expectations.  He is on the Board of Shishur Sevay, and he and Heather started Friends of Shishur Sevay a 501 (c)(3) in the US.  Cici’s wife Erica created  the website here and Goutami (Shishur Sevay’s first intern) completes that group of incredibly busy people who do it for the children, and also for me. I know that and I am grateful. Andrei is going to run the NYC Marathon this year and raise money for Shishur Sevay.  The secret is OUT!

It hadn’t all started out that way.  I came here on my own and though my children were proud of what I was doing, they would rather I’d stayed closer to home.  But then they came to visit and fell in love with the children and wanted to take them home with them…. And then Heather and Andrei had kids and now my grandchildren skype with my kids here and Heather tries to explain to her daughter how grandma is mother of all these kids, and mother to her mother…… well, these extended families!

I LOVED giving out money when I was at Johnson & Johnson.  Being a donor was an incredible high.  Fortunately I never took it personally as I was thanked, honored, etc.  Later on when I first came to India, I loved being able to give money and time.  Yes, it’s a high.  So it’s also hard for me to be at that other end.  You see when I was at J&J, everyone took my calls!  But now, raising money?  I get left wondering whether I should call again, or let it go, not wanting to bother people, not wanting to be perceived as a beggar….wondering whether I said something wrong, voice too loud, high, strong, deferential?  I wonder if I treated people that way?  I really don’t think so, but I don’t know how it felt to them.  Oddly, even people I helped often weren’t very nice to me, but that wasn’t what I was there for.  If I improved someone’s life, that was enough.

Two nights ago I was talking with one of the girls about how it felt years ago when we had some terrible battles going on here, with some staff successfully creating barriers between the girls and me.  I said it felt terrible, but I never thought to leave because in a way I won anyway.  I got to feed them, educate them, give them a safe place, and I sure wished it had been different, but they had hopes now, and a future….. and that is true.  I did it and do it because it makes me feel good. As for what happens when I’m gone, I think I put it best in a previous blog from 2011 here

I’m the captain.  The ship has to be seaworthy.  The crew has to be able to take over at any moment.  The Board has to be prepared to give direction to the crew.  All this needs to be in place.  It came to me pretty simply this morning.  I have to leave a seaworthy ship with a seaworthy crew, docked in a safe harbor.  I could not “rest in peace” otherwise.

But back to fund raising and the future.  I’m beginning to feel I have to figure out how to protect myself in all this.  Even as I write I cringe at things that have been said to me.  It’s been personal….  Maybe I need to become “A Beggar in Armour!” When I was with Johnson & Johnson I used to get dressed in the morning in my dark corporate suit, choose a blouse from a variety of whites and off-whites, pick out a suitable Hermes scarf, step into my Ferragamo shoes, put on my expensive make-up so I would look natural, face the mirror and say, ‘They think this is me!”  But that was the time I was in my final skill-building for what I have done since, and now, more than any other time in my life, I’m more me than ever, very strong and very vulnerable and I have to manage those contradictions to secure the future of my children.

I haven’t found an answer but I’ve laid out the landscape of the problem…. or rather the seascape.  Like everyone else, I’m a work in progress.

Michelle at the Helm of the Aquarius

Michelle at the Helm of the Aquarius, circa 1970

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?”

2015-06-12 10.41.15_W     2015-06-12 10.41.37_W

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.

2015-06-12 10.43.18_W   2015-06-12 10.43.20_W

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.

2015-06-12 13.51.54_W  2015-06-12 13.52.09_W

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. 

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.

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