School begins at Indian Institute for Cerebral Palsy

Sonaliimg_0007w_2  Bornaliimg_8962w From the top: Sonali, Bornali

RaniRaniimg_8949w   Gangaimg_0017w_2


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!

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April 2008
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