School begins at Indian Institute for Cerebral Palsy

Sonaliimg_0007w_2  Bornaliimg_8962w From the top: Sonali, Bornali

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All four started school this month.  Sonali is in Nursery and the other three is Class I.  All four have adjusted and are distinguishing themselves with their varied personalities and styles of interactions. 

The logistics of transport and preparation, packing clothes and lunches, extra clothes, keeping track of what days they have hydrotherapy (MY favorite activity), etc. are part of why April disappeared.  They all go at the same time, but Sonali comes home earlier.  And then there are the older girls and their schedules, but fortunately they were on break most of the month.  They take turns coming to help pick up the little ones at two.  They love this, and the little ones love seeing their didis there to meet them.

The teachers share almost nothing of what goes on, which I find difficult to accept.  From their perspective they don’t want to be bothered by parents asking questions and taking up their time.  "If we talk to you we have to talk to all the parents!"  Those of you who know me, know where this is going.  I am the kind of parent every school Principal purports to want but not one really wants in their school.  Added to that is what I’ve learned in India, that "A teacher is higher than a parent," and I go into "I’m facing a brick wall" mentality and I’m not good at that.   And anyway, since I have four kids in their school, and I’m paying full price, no concession for siblings or charity, I figure I’m a good customer and if they talk to me they save having to talk to three other parents too.

It struck me the first day, that when we pick up our verbally articulate children from school, they can tell us what they did, how they were, what they liked and disliked.  They can tell us who they played with, what colors, letters, words they learned.  Their language communication bridges their lives at school with their lives at home.  With non-verbal children, the experience as a parent is much more like daycare, leaving off an infant and depending on staff to tell me what the day was like.  The afternoon teacher can’t continue on themes, strengthen skills, knowledge, because she has no idea what the children were learning and doing.

There is a diary where I’m supposed to write questions, and I have made entries, but the responses take a week or more and are non- substantive.  This institution is one of the premier centers in India and trains professionals and non professionals throughout India.  They are known for their rigidity though.  I’m not a single case at all.  But I’m probably the only one blogging about it.

I have a past history with this institution which may also affect the tension between some of the experts and me.  About four years ago I funded this institution to do evaluations and develop care plans, with goals and objectives, for the handicapped children at Sabera Foundation.  The children were the left overs from when International Mission of Hope closed — the ones who were not and would not be adopted.  I felt a certain responsibility for the children left behind as the orphanage where my daughter came from closed its doors.  Many of the old staff were now at Sabera, as well as the handicapped children.

I’m the kind of donor every institution/NGO purports to want, the one who doesn’t just give money but gets involved.  So I’m also the kind of donor no one really wants… because I had some disagreements over the conclusions.  They developed the plans based on "efficiency" of care, while the staff, who had been taking care of these children (some in their teens) since their infancy.  Efficiency meant job loss, and efficiency meant giving up the very personal and nurturing roles they had with "their" children.  It may have been more efficient to have one person bathe all the children, but each massi liked bathing "her" children… and why not?  There was no place anyone was going… they were there for the day, no classes for kids, no reason to be "efficient."

I have also learned over time that in this culture, disagreement is considered bad manners.  Arguments are common; discussions more difficult, and quickly become personal.  So I really do try to shut up early — but not about wanting to know what my kids did all day.  IICP is stuck with me, and I with them… And of course, like elsewhere, no one really knows what to make of me.

So, the little ones are in school until 2.  They have lunch at school but rarely finish, so we just have lunch ready for them when they get home.  Then they get a trip to the potty chair, a shower, and a short nap — if they fall asleep.  At four, the special education teacher arrives and is with them until 7.  The trained caretaker is here 4-8 also.  Some evenings the physiotherapist comes, and sometimes the speech therapist.  One evening the speech therapist was here with them until 10:30 but I fell asleep on the mat at 10.  We try to get physiotherapy and speech therapy three times a week each. Sometimes the therapists come on the weekend.

Then of course there are the other eight girls, and their lives and schooling, which I’ll write about more.  But I do have to tell you that seven passed; one of our girls was third in the class, and today I filled out their admission cards for Class II.

More happened, which I’ll write about over time.  I remain so much at peace, happy that I am here, that they are here, that we found this little place to be together.  They smile.  I smile, a lot!

People who help us…

The school assignment was "People who help us" and the girls had to dress and act the parts of various people who help us in the community.  The pictures are from the practice, dress rehearsal the evening before as we could not be there for the performance.  Actually this was part of the year- end examinations so they were graded.  I present "People who help us" as played by girls at Shishur Sevay.

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Holi in Kolkata

The Festival of Colours…  celebrated this year on Friday 21st of March by Bengalis, and the following day by non-Bengalis.  Note the reference point  — Bengalis and others…  I don’t know what to call the "others" who happen to comprise most of the population of India.

Pictures from our Holi celebration, which is really a drenching in water and dyes.  The girls wore the running shirts from the various races and marathon brought here by my kids when they last visited.  As I’ve written before, I’m not sure of how the order of these will come out, and i won’t even bother to try for captions, but if I put these in Album, they are harder to find….

Holi at Shishur Sevay:

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Bubbi is afraid of bugs

The vet has come to Kolkata to talk to me, as Bubbi has some health and infertility problems.  But as an aside, I learned that she is afraid of bugs.  I had asked if she was getting fresh grass, as I’ve learned that although everything may look green in the fields, there may not be much grazing space.  The young man taking care of her said they cut grass for her and bring it to her….   A few weeks ago they took Bubbi out to graze in a field.  As they were standing there, she saw a large bug, probably a dragon fly and became terrified at the sight and dropped to the ground.  When she got up all she wanted to do was to go home…. and not go out to the field again.  So now she has her fresh grass brought to her.

I was planning to post on this blog a story that my children are all "spoiled" and now it seems my cow is spoiled too!  It seems to run in the family, as this was true of my two kids, one stomach baby, one adopted, and now my kids here and my cow.  Let there be no doubt that I am an indulgent mother, and I do not discriminate.

What do I mean by spoiled?  In the following pictures, Sonali is being soothed.  One of the massis (caretakers) tried to put her down, but she prefers to be held.  So, she started crying, and the caretakers went into "indulgence" mode.  Sonali loves her thumb, and loves to have cloth waved across her face.  At night we hang a strip of sari over her because she loves to reach for it and wave it across her face, or suck on it, along with her thumb.  So, in these pictures they are trying to soothe her by waving the cloth across her face…..  It was just a moment of realization for me of how spoiled my kids are, and how I actually enjoy that.  There is something so special about taking a baby who barely seemed to be aware of her environment or people, and helping her become demanding of her needs being met.  It just feels good, good enough for me to be this way, and good enough for me to have staff who will indulge the children too.


As for Bubbi’s health problems, she has a recurrence of nasal polyps (associated with infertility), which she had when i first got her.  So we will treat again for that, and then put her on vitamins and on some other meds the vet recommends as her uterus is "boggy" and retroflexed.  (I feel like I’m back on the GYN floor of the hospital.)   We are also discussing the matchmaking aspect — what breed, crossbreed, insemination, etc.  It’s OK if she doesn’t get pregnant, but I want her health to be good, and it would help the family if she had milk and anyway there is always something life-affirming about babies of any species.

News on the Shishur Sevay front — aside from cow news:

1. Chicken pox has passed, with eleven of twelve girls getting the pox — but the four little ones only getting some rash and no fever at all.

2. The school year is over and our girls have passed with high marks.  We have begun preparing them for the next year during this month interlude.  We are also having fun…  I’m so proud of them!

3. The handicapped children will start school 15 April, as starting was delayed 2 weeks by the school. It is exciting.  I used to laugh at the mothers who mourned before their kids started kindergarten.  Now I am one of them, worrying what it will be like here without them all day.  My current life gives me lots of opportunity to laugh at myself.

4. I have submitted the renewal of license forms, and I believe after a preliminary meeting that there will be peace with the government.  I have cleared the air with the critical official.  I am the eternal optimist.

5. The government (different department) has asked us to take more children.  We have agreed to take three more orphans when the government is ready — presumably end of this month.  We can then start them in the same in-house program as our slower students and teach them here until they are ready academically and socially to go out to school.

6. Bubbi lives not far from where we took our non-orphan to live with her mother.  The young man here today said he ran into them a few days ago at the market.  They knew each other from our visits to Bubbi and the exchange was friendly.  Our girl is looking good and happy to be with her mother.  I really don’t think she misses us.  Orphans are different, and she wasn’t ever one of the group.  She had a mother who wanted her; her mother learned that she wasn’t as bad a mother as she thought.  It is so amazing that they ended up within a circle of places and people I know here.

I write this on a Saturday afternoon.  The girls are in class, one hour of math, and then one hour of games with the teacher, a Saturday treat for her and for them.  A little while ago I looked up and saw the physiotherapist working with Sonali.  I couldn’t resist taking a couple of pictures — her hanging cloth, the people who care about her, work so hard to help her reach her potential, to be the most of who she can be, and the happiest that is possible for her.  Remember, she was the quietest of the four we took that day — the one I held and at least reassured myself that she knew what human touch was — that some part of her sought tough and comfort.  Now she pulls herself up, sits, cries when she is hungry, cries when she is put down, laughs when she hears our voices — and learned to train us to meet her needs.


0_sona_4769wHappy Baby

April 2008
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