Ganga Scolds the Dentist

This is the story I told to Ganga in preparation for her trip to the dentist today.  It is a story told in pictures.  It is part of a process or form of communication called AAC or Augmentative and Alternative Communication.  We are late in getting this started.  The children initially attended a school known for this expertise but for many reasons, mostly ones I do not understand, this was not being taught at their level. 

Ganga had to go to the dentist.  We had been there the week before and set this appt to actually do some work.  She had two blackened teeth, milk teeth, but they were in danger of infecting her gums too.  She has other work to be done, but this was a start.  So I told her this morning:

Ganga has a toothache  so Ganga goes to dentist

Ganga is afraid but she does not cry.

Ganga is happy, and Mummy is very proud.

Dentist visit

Ganga loved the story.  I took this sheet to the dentist and reminded her, and showed it to the dentist.  She was truly wonderful.  So was the dentist.  He worked on her with her on my lap.  I held her head still and she kept her eyes on me.  When it hurt, she yelled at the dentist!  She didn’t cry.  When he’d stop she would scold him, tell him how it felt.  Then she was good again when he worked on her.

I have begun a serious program in communication for all the children with disabilities, and the older girls are also enjoying talking through pictures.  Soon we will have posters all over the walls with different illustrations, simple line drawings, symbols we will all use.  I understand the process now.  I work at cutting and pasting on the computer to get the pictures done… and we now have books of pictures, of emotions, of getting ready for the day, of school, the park, clothing, playing, books, drawing, and of course food and water.

We are a happening place, with teachers all day long, working together, working with the older and younger kids.  The gov schools are closed until 15th June, so we also take time to go to the park, to play in the sand in the yard.  About a year ago I gave up on getting grass to grow so now it’s a big sand pit.  I brought in 40 bags of sand.  The kids love playing in it, sifting it to clean it, tumbling in it…. Rani loves patting it, and running it through her fingers while she sings.  Here is the latest picture of me:

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PROUD

The Washing of my Feet

This picture/post is not for the orthodox politically correct reader.  Those are my white feet and those are my brown Indian girls who are washing them, with loving care as you see, and as I felt. Race and skin color cannot be the single identities that define our relationships.  The children don't see it that way and the rest of us shouldn't.  But I am aware of those PC opinions and judgments of what I do here, which is why I address the issue.  From the beginning I have talked about what it is like being white in an Indian world.  Sometimes it is irrelevant.  This is good.

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The girls love to massage my head with coconut oil and to wash my feet and then massage with coconut oil.  They do this sometimes as I write at the computer.  We had just spent the morning cleaning the garden.  So what happens when they scrub my feet and my legs?  They remember their families, their mothers, fathers, siblings…. and they talk.  I heard more stories yesterday morning.  As they scrubbed I heard more about violence, about drinking, and about beatings.  A couple of times they stopped to show me scars, places where knives had cut, nails had been poked — and of course I already knew of the burns.  When we shaved their hair two years ago, we saw so many burns and scars…

 

I learned about villages where they had been… and they talked each repeating what the other said, as Greek chorus, in case I had missed it.  These girls love to nurture!  They are constantly alert to any scratches I might have, my scars, how I got them.  They want to take care of me.  This reminds me of another poem I wrote:

 

 

One

Worse than unloved is

To be unable to love,

The stars will not sing,

The trees will not bud,

The moon will not smile,

The earth will not thaw,

The wheat will not grow,

The sails will not fill,

The mind will not think,

The heart will not feel,

The night will not end,

The cradle will fall.

Ganga and Bornali are seven years old.

I took Ganga and Bornali to the dentist this afternoon.   I'd taken Rani two weeks before.  Her teeth are unaligned and she sometimes bites her tongue.  Ganga has two blackened teeth, still milk teeth, but I wanted to know if they posed a problem.  She also has one badly decayed tooth with gum swelling around it.  The dentist will try to do this in the office but it may be necessary to do the procedure in the hospital under general anesthesia.  Given my experiences with the health care system here, that is a frightening prospect. 

The children were seen elsewhere last year but no one offered a dental age.  Today I learned that according to their teeth development they are seven years old.  It is hard to describe how horrible that feels, because when they came, two years, three months, and one day ago, they looked like babies.  Here is a picture of when we first saw them at the institution.  I took the picture and wrote their names on the palm of my hand because I knew we wouldn't get records that would identify them… I at least wanted to know their correct names, or their names on record.

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Many thoughts go through my mind at once.  The most repetitive is, "where was Ganga for the first five years of her life?  How can a child so social, so engaging, so curious, so aware of everything around her, so dependent on me — how could she have arrived with no motion, no expression, no relatedness, just passively being moved, changed, fed — a rag doll that could be left in any position, arms that just hung, hands that did not close.  Where was she for those five years?  How could no one have noticed, for if they had she would have come with some of the vitality she has now? 

Ganga had her eyes, the eyes that begged me to take her upstairs to the classroom, the eyes that watched the Bengali movie Damu, about a father who was able to get an elephant for his daughter.  So I wonder about her past.  Did she spend all those years in a hospital?  Was she hidden away in a room with a TV?  Did she have people she loved, grew attached to, lost?  Was she loved at all?  When we meet old people, especially when they are dressed in white cloth, she tries to talk to them, as if to take up where life left off.    She looks to them with a sense of familiarity and with expectation that they will know her.  Saraswati_4745 

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Bornali's ears are pierced so she had to have had a family at one time, a family that abandoned her.  A child with no mobility cannot run away, or get lost somewhere in a train station or on a road.  She had to have been left, given up — ties broken.  Someone had to have said, "We don't want you."  Bornali showed no emotion for a long time.  She bit anyone who came near — not aggressively really.  She was like a little alligator squirming on her belly, mouth open, ready to clamp onto any flesh she came near.  I had a separate crib built for her because we couldn't leave her near the others.  Bornali didn't laugh and she didn't cry.

 My first goal with Bornali was to stop the biting, which I did by offering my arm, and really yelling when she started to bite.  She either had to learn not to bite or she was doomed to a life of isolation.  She learned; I took apart the crib.  She has blossomed into the child in the pictures in my last post.   She is a sweet little girl, but on the shy side.  She is smart, and learns quickly.    She is exceedingly vulnerable to loss and separation.  She has her favorite care-giver, and especially her favorite Didis.  And of course, I am mummy to all of them.  How should she be seven?  How could she have been five when she came?  Who did this to her?Bono_0147w

 

Rani of course we know about as we found her mother.  She too has changed incredibly, now being present among us.    She has left her isolation.  We welcome her.  In her case there was no way her family could have kept her, and no facilities that would have taken her.  So she was left somewhere, to be taken by police to Sukanya home, where we found her and brought her to us.  For a long time she required one full time caregiver just to manage her.  She is funny and silly.  She has incredible rhythm sense and she and I tap surfaces together or she takes my hands in hers and claps them together.  When she came she only spun around in circles.  The girls love her and one of the older girls taught her to stand.  Now she stands on her own.  Her mother has peace of mind.  This is nice for all of us.

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Sonali is our youngest and the only one with medical records.  She is visually impaired and microcephalic — but we really don't know yet what is ahead for her.  She has had severe seizures.  Her latest effort is to put food right up against her left eye and then taste it with her tongue.  She is trying to coordinate visual and taste.  She has also begun to seek more social contact.  Much of the time she was in her own (seemingly delightful) world, climbing and swinging on anything her hands could find.  One of our teachers is determined that she will be a gymnast.

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This is not just about India, for children all over the world are abandoned, particularly children with disabilities.  My mind goes to cold hearts, to people who only love those whose protoplasm is formed according to certain social conventions.

 

I love these children.  That's the bottom line, and it hurts that they have had such loss, isolation, hunger in their lives.  Because I love them I will continue to to everything in my power to provide those experiences that make life meaningful and allow any of us to grow.  But it still hurts that Ganga and Bornali are seven, and that so many years have been lost.

Saraswatiw_4755 Saraswati_4746-

 

*********************************

I am up at 3 am, thinking about this post, what is still unsaid.  Looking back, the children look like pictures we sometimes see in the news of children who have been locked in closets, basements, never taken out, poorly fed… a seventeen year old who looks like seven.  And what we are seeing at Shishur Sevay is that our children somehow preserved a sense of self, identity, even throughout their earlier years of neglect.  How does this happen? Ganga and Bornali are normal children.  If they had normal motor function, speech, and early care, they would easily blend in with any other group of children.  Ganga would be outgoing; Bornali would be shy.

So the question on my mind when I woke at 3 am was,  How does the human spirit survive intact when there is no reason, or does it live like a hidden spore, ready to grow when/if it is touched by human warmth and love.  For both of these girls there was some hidden protected place.  I'm reminded of a poem I wrote, about a protected place…

 

There are Cobwebs in my Heart

There are cobwebs in my heart

Where mama used to be,

A room preserved…

Frozen in the moment of her

Leavetaking.

The growing strands of thin floating filaments

Encroach,

From the corners of

Her room,

And gather over time to mark the emptiness.

Enshrouded,

An alter of love remains,

Built long ago to call for God,

— Just in case he was listening –

A dainty layette,

Delicately embroidered

White on white

Awaits the newborn,

Booties, hand sewn in some distant land,

Where women feed their own

Knitting for the children they’ll never know.

A lullaby plays, the needle jammed —

The cradle will fall.

The cobwebs soften the harsh notes of the broken music,

They blur the searing loss,

And comfort the dying infant

Like gentle shrouds of lingering memory.

Oh mama, if only you had stayed.

 

The New School Year

From DAY ONE:Sabitri_4082

 

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Bornali in School

Sabitri_5650  Today is DAY TWO of the new school year.   I'm sitting on a bench in the hallway of Sahapur Sabitri Balika Vidyalaya, on call if I am needed.  Two of our handicapped children are here.  It is all new and the school is worried about how to take care of them, but they have truly reached out to make them comfortable.   I have promised to wait, to be available.  Three months ago this was a dream, to have the government open to handicapped children.  This is a beginning.  I chose to enroll only two of the girls, Ganga and Bornali.  As yet there is no "program" here and they are content to just be present and watch, to be a part of the school.  They were admitted because of Indian law calling for education for all children.

Ganga has settled in fine. Sabitri088cr This school is where she wanted to be all along, in school with her Didis.  I used to carry Ganga in the backpack when I walked the girls to school.  Bornali is frightened of new places. She cried the first day and I was able to soothe her.  Today she screamed when we entered the classroom.  She settled down after a while and I left for the hallway.

DAY THREE and I'm back on the bench in the hallway.  Bornali only cried for a little while and then I could leave.  Today they are staying longer.  At 9 am there is a book ceremony when books for the school year are given out.  The Headmistress asked if I could attend so I asked if Ganga and Bornali could stay so I didn't have to take them home and come back.  She agreed. I hold the post of President of the Mother-Teacher Association.  I know Ganga will be happy as yesterday she was aware that she was leaving before the others. 

 

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Seema, our Board Secretary has been a wonderful advocate. This morning she had a chance to talk to the children seated around Ganga and explained that God had not given Ganga arms and legs and speech like the others, but she understood everything.  She had three children each say their names to Ganga and Ganga reached out with her hand.  She is so happy in school.  She wants so much to be like the others.  When she sees another child/adult with CP she immediately recognizes that they share this condition. 

There is a huge learning curve ahead for the teachers here.  But this is true everywhere.  They are afraid of the children, unsure how to talk to them, worried about saying/doing the right thing, feeling unprepared and inadequate.  The government is required to give a resource teacher but has not done this yet.  We are in the midst of elections and many things are put off.  I really am grateful just to be in the door.  The rest will follow.  For my children, I have a full teaching program at home.  This is for socialization until it can be more.

DAY FOUR

This has become my only time to write.  Yesterday's book ceremony was a dream come true.  Ganga and Bornali stayed for it all.  This is a ceremony when books are distributed for the new year.  It is also a time when prizes are given out for the past year.  The ceremony is held in the huge meeting hall. All the classes were there today, which meant my ten girls in school were all together.  Shanti Devi came to help.  We wheeled Ganga and Bornali in, and they joined the others.  Seven of our big girls danced – unexpectedly!  So Ganga and Bornali got to see their Didi's dancing.  Sabitri061ed

The local councilor was there and we chatted.  He too has been very supportive.  He said that after elections we would do more.    Then prizes were given out.  Our "first in class" received hers, and then another of our girls won a prize in drawing, and two others in running.  Bornali is a very quiet girl, but when applause broke out, she screamed and kicked her legs and everyone in the room heard and saw her and enjoyed her happy kicking.  Later I was also asked to present some of the prizes. Sabitri043cr

There was a moment though when I just walked over to a window on the side of the room, and truly basked in my happiness.  I  basked in my success in keeping the girls in this school.  It is a haven for them, for girls who have had few if any havens in their lives.  I did fight off pressure to put them in "better" schools.  This day I basked in having Ganga and Bornali here, what had seemed just a mad dream, and now was reality.  I imagined a big puff of air above my head, holding off all the constant problems and pressures and I had a happy time in my bubble.

We are in the midst of a major crisis with the government!  Some things have HAPPENED  in spite of our diligence about accuracy — things out of our control, but which I can't talk about specifically.  I am  consumed with trying to straighten it out, while also attending to hair clips and socks at 5 am.  I get worn out.  

Yesterday I got home to major battles going on among the massis, and then the accountant came and then I had lunch and napped and then I tried to do a little work,but didn't get the paprs done, and then I had emails regarding business cards I need and then we went to visit a board member and friend whose mother just died and then I came home and went to bed and then discovered the rabbits hadn't been cared for, and when I went to check the rabbits I saw the plants were all drying up so at 11 pm one of the girls cleaned the rabbit cage, which was smelling and I watered the plants and then went to bed to get up at 4 am to start this day.  In between though, I chatted online with Cici and then talked on the phone with Heather.  We are a very small family.  We are in touch almost daily, including on Facebook.  I have been "friended" on Facebook by my daughters and son in law. This is precious.

I have had to take charge of the hairclips and school badges, as I did last year.  They are easily lost and the school only allows red clips and garters.  This is one of those areas I really try to comply — a gesture that I respect their rules  (And, I get scolded if the girls arent neat and combed, and I let it get to me, which just proves I'm still a child at heart!) Hunting for red clips in the market is not always easy and I hate having to buy them.  So, I have a lock box for the red clips and garters and school badges.  I have separate plastic bags for each girl, with her name.  I sleep with the box next to me.  In the morning I give out the clips and badges.  When I get up to go to my computer I take the box with me.  When the girls come home from school all the clips and badges go back into the plastic bags and the tin box.  In truth though, the girls love the system.  They love coming to me in the morning for their badges and clips.  It's a ritual.   It's their way of keeping me attentive.  I am Keeper of the Hair Clips and School Badges.  I am Mother.

DAY FIVE

It becomes a routine.  Ganga is fine and loves being in school.  Bornali cries for the first ten minutes.  She is just overwhelmed and she "dissolves" into tears.   Sabitri090I tell her she is a big girl now. Sabitri093 We are closer.  Ganga, who used to be glued to me, is more on her own.  it's good.  I write again from the school bench, children wandering by, and I shoo them back to class.  The Headmistress just stopped by and handed me Ganga and Bornali's diaries with their class schedules.  When we get home our teacher will go through what was covered in class.  I'm having new chair/table tops made to fit better in the classrooms.  Eventually the school will have attendants so the children can follow in class.  But what they have now is wonderful.  They get up in the morning and we all walk to school together, Ganga and Bornali in their strollers.  We reach before prayer time, so Ganga and Bornali join the line, next to their big sisters.  Bornali is solemn.  Ganga glances around to see who she can make eye contact with, who will be her next friend.  All this is normal.  The have a life.

 

I have a life too, a very very good one.

The Hall where I wait and blog, while the children are in class.  Sabitri064

May 2009
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