22 Apr 2012 Leave a comment
in Culture, Daily Life, Dr. Harrison's Life, Obstacles Tags: children, daily life, love
I forget sometimes to write about what it is like for me here, every morning, day, night. Whatever the chaos, the “things” that go on, trials and tribulation of living anywhere, I am always only one hug away from a child who will take comfort on my lap, in my arms, and there is no sweeter feeling —
“Souls sang to her heart,
Harsh winds taking them afar,
She nestled them home.” MH
I am home with my nestlings. I heard them calling and brought them home.
03 Jul 2011 2 Comments
in Assistive Technology, Cerebral Palsy, Daily Life, Disability, Ganga, Special Education, Uncategorized
Yesterday afternoon only Ganga and Bornali were home. Nine others had gone to an event and Rani was in the park for her afternoon walk. I was home still recovering from my cold; teachers were gone… so it was time for some fun. Ganga and Bornali had just been given misti doi (sweet yogurt) for afternoon snack, and per my instructions, I wanted to let them work at feeding themselves. Bornali takes her food very seriously and when the spoon became too difficult she did the only natural thing she could think of, which was to do away with the spoon and go directly to the source.
Bornali gets practical
Notice that not only has she gotten to the source, but she used her knees to tilt the tray upwards to bring the dish closer to her mouth. A few years ago she did this with a puzzle piece.
2008: Getting the Job Done
Bornali’s teacher was not happy with this. In the teacher’s mind, the assigned task was for Bornali to use her hands to pick up the puzzle pieces. But in Bornali’s mind, since her hands weren’t getting the job done, she used what worked for her. In her mind, the task was to pick up the piece of the puzzle. In yesterday’s task, Bornali’s understanding was that she was to eat without assistance and since she couldn’t get the spoon and her hand working right, she did what made sense to her. It seems to be what made sense to both of them.
Later in the evening Gangaand Bornali delighted in our showing the pictures.
Ganga working with her hand in 2008
The pictures from 2008 also show Ganga struggling with using her hands. I realized that she is no more able to use her hands now than in 2008. Her preferred means is her foot. Apparently she has figured out how to turn off the tv with her foot if she doesn’t like what is playing. For computer she prefers her foot. Here she is learning from Dipak Ghosh, her role model
Learning from Dipak Ghosh, her role model
though we have just starting using a head pointer.
Hunt and Peck Ganga style
26 Feb 2011 2 Comments
in Daily Life, Obstacles, Safety, Violence
It has been hard explaining exactly what is the trouble, and why we have to move, but we can still stay in the general neighborhood. So I made a picture. When I was a kid I spent hours and hours drawing house plans. I’d browse magazines of house plans. I’d imagine common space and individual rooms. I liked simple designs, “L” shaped… So I went online last night to look at house plans and ended up downloading a trial version of SmartDraw. I took a landscape template and spent much of today making a picture that represents our situation. In a way, working on the diagram has been an escape, a meditation on our situation.
We live at the end of the lane. The houses in RED represent threats to us. House A monitors all visitors and staff, listens to people talk as they go by, comments on the children, and eventually repeats all he hears to whomever will listen. He is a man with political power. As I wrote below, none of the other men will come past his house to help us.
Then there is House B, a partner to House A, who also rents out shacks in the area, and thus he controls the tenants. Recently he opened a tiny store right next to Shishur Sevay. The music blasts through the neighborhood, so even people who would otherwise talk quietly outside are yelling to each other.
Once out on the road our situation is better, and probably as good as it might be anywhere. We are known, and respected. We shop at local stores. Our girls go to school and meet other local children at the bus stops. I am often referred to affectionately as “Mother Teresa of our Area.” It’s really funny. We have a good relationship with the rickshaw wallahs, as I have helped some of their kids, and I always tip well. If you take a rickshaw from the nearest major road and ask for “The foreign lady with the children,” they will take you right to our house.
How did we get into such a mess? Well, House A has a small fan factory in his ground floor. The owner of that factory was someone we knew for years and trusted. He is the one who showed us the house, and when I went to see it and walked past his little factory in House A, I thought how nice it was to be close to people I knew. I wasn’t alone in this. The rest of the Board thought it was fine too. You don’t have to be a foreigner to be fooled.
I want us to stay in the neighborhood because Gibi and Seema are close by and they are our support, the ones we call if we need help, if I have to take a child to the hospital, if I am sick — they are part of our DAILY lives. They too are part of the neighborhood and their presence and support add to our security — except at the end of the lane. They can’t help us here BECAUSE they are part of our support.
The girls have had a good day, a mixture of schooling, story telling, dance, and now TV. The radio outside is blaring but I don’t even try to do anything as we will be moving. I’m also working on a wishlist of what we want/need. We need space, accessible space.
I was going to save this for another blog, but here goes:
SAFETY AND PROXIMITY TO THE CURRENT LOCATION
Garden
RABBIT HOUSE
Today I learned that the girls were worried about Jelly our dog and also our rabbit — would we take them? I told them the story of how I once bought a battery operated aerating travel tank to move my angel fish from Boston to Pittsburgh. I told them Jelly will come with us.
That reminds me about the wild dogs who live outside and howl all night. The post office won’t deliver mail here because of the wild dogs. Letters are left at that “friendly factory” for us. Sometimes I carry a cane or umbrella just to keep the dogs from us.
You know, it really is bad. I worry sometimes about just being a wimp. Well, maybe I am but it’s time to wimp out and get my kids and me to the other end of the lane.
It’s ten and I’m heading for bed. The girls are watching TV as it is Saturday night. A few nights ago I went to bed and asked, “Is everyone asleep?” I got several, “Yes, mummy,” responses. So I asked WHO was asleep and the sleepers revealed their names,,,, and yeah, they finally got it and we all had a good laugh. I love my life here. It’s hard but there is nothing else I would want to be doing now in my life. I just have to get us to the other end of the lane… HELICOPTER?
13 May 2009 Leave a comment
in Cerebral Palsy, Daily Life, Disability, Dr. Harrison's Life, Education/School, Ganga, Inclusion
From DAY ONE:
Bornali in School
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. 
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.
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. 
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. 
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. 
I tell her she is a big girl now. 
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. They 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. 
Shishur Sevay 
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