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Friday, November 15, 2013

Untold Story of Shilpa.....SAGA of a special child


The Saga of a special child ….ours …. an untold story of Shilpa

1984

Just one year after our marriage we looked at the world like any other with hope and happiness

26 and 21 years are ages when hope reigns supreme

The world is seen with rose tinted glasses   

And then we had our first baby

 Suddenly we went into a free fall and the future looked dark and foreboding.

This was a story we would hear repeatedly over the years from distraught parents of the disabled.

Suddenly you are moved into a different world, pushed behind curtains and you look at others who do not have the problem from a dark crevice.

Pain and punishment be it a handicapped child, loss of a loved one, even frustration and harassment in life changes perceptions and one crosses over into a world of misery

is this the hell people talk of ?

 Many of us never realize the heaven they are in do they?

But those who have been in pain surely do ,though time makes them forget things

 I wouldn’t wish learning these lessons  by personal experience it just isn’t worth it

sorry to say so

Back to our story We knew there was something missing from Shilpa though she looked like any other baby a trifle  smaller in size ,no disfigurements in fact she was a beautiful child .

There was a neonatologist in the hospital at that time neonatology was  a rare specialty he  confirmed our fears by clinically numbering her problems ,

The way doctors break bad news should be as nimble as breaking an egg ,unfortunately many of the physicians whom we met then were crude and unskilled in this vital acumen ,I still remember waiting in his overcrowded clinic after a few days with a whimpering and irritable shilpa ,finally we sent a note asking him to grant us earlier audience after all we were from the same profession ,and we had a problem child , I remember the reply note that Dr Gopaul sent to us  vividly even today after more than three decades ,it said “”you may wait till I call you “!!!!

We walked off in a gruff but even to this date both me and premila and me give priority to the handicapped or to our own colleagues waiting to see us ,

I hope Gopaul happens to read this or someone shows him this.

Over time humans get used to all miseries and they attempt to be happy with what they have.

For us too days moved ahead, at times filled with happiness and at others with grief, we would be happy at a small smile or a single step of our child years behind when other children would have done the same with natural ease but still great steps for us, our eyes would glow and we would declare to one and all of the tiny victory at times to be countered with a vacant stare or an amused smile at our strange happiness ! From the world at large .

everything is relative isn’t it ?

Temples, ashrams wise men many specialists ‘in different hospitals astrologers the frequented haunts by such parents were not missed by us too

Slowly it sank into us that there is nothing the world we could do but sigh for our child and on that day we or rather premila my wife decided to be proactive.

We knew that only we could do something for her

We searched for and found Raksha Rehabilitation Centre in Cochin west a day care center for special children and shilpa started going there,

Premila would accompany her and sit through the sessions learning the nuances of teaching a special child

For her there was nothing more important than her child and she focused only on shilpa leaving the tending of the family part to me through our small clinic.

 we had to live you see !

We can never forget the dedication of the teachers and trainers in Raksha, they were dedicated sincere and totally committed ,Ms Jayashree menon ,Ms Manju Menon Ms Minal, so many more worked with dedication

truly they were angels of love.

They had no reason to be there to do this work which was demanding and needed a lot of patience and could give a lot of frustration too but they did it with a smile.

Shilpa did show improvement with all the attention she received ,she was a beautiful child and premila dressed her up in the best ,to her this was very important .

We heard that Christian medical college hospital in Vellore had a centre for training special children along with their parents from a doctor couple friend of ours who had a special child too.

Premila communicated with them and soon left with shilpa and her mother and our second daughter Sruthi to Vellore

Nambikkai Nilayam in Tamil means centre of hope, true to its name this centre run by the psychiatry department of Christian medical college Hospital was a pioneering experiment to include parents of mentally challenged children to live together and be involved in training of their special child and in the process be taught in the nuances of looking after and improving the child.

This had several benefits for one it was something proactive for a parent who did not know how to go about doing anything for his or her child, secondly it empowered them and gave them a very positive attitude to their predicament it also brought together several people with similar issues and thus developed cohesiveness from each other to solve their problems in a better way, parents also were given time off with the staff looking after their children to release their stress.

The novel concept attracted Premila a lot and within as short time she was an active participant in the training as well as in parent activities sowing the seed for her parent related work which would grow.

Shilpa too was happy as she had undivided attention from many, the place was calm and easing.

After about 6 months Premila had learnt a lot on training her daughter.

We also showed Shilpa to the cardiology department in CMCH for the  ventricular septal defect ( hole in the heart ) ,to any other parent having a VSD would give them great worries but to us with her developmental issues which was impossible to be treated we were less anxious but we knew it had to be closed if she would be symptom free later ,at times most VSD close spontaneously but with age if it did not then it would be better It was closed surgically or else she could develop irreversible cardiac failure with time .

We wanted what any other child would get for Shilpa  and were ready to leave no stones unturned to achieve that .

The cardiologists also felt surgery at the earliest would be a good option in her case but was hesitant to give us a date, one of them asked us if it was cost effective to spend money for such a child and when we protested that for us she is our child as much as any normal child they declared they did not encourage surgeries for such children as their time would be better utilized for normal children!!

This was we felt and still feel a heartless policy for heart surgeons

 (Forgive the pun could not resist that  ),and we could never forgive that institute for having such a policy

We did not lose heart,we travelled to Madras to meet eminent cardiothoracic surgeon Dr Cherian who was a celebrity ,he listened to our story patiently being  a man of few words never made any comments but just said I shall do it and for you both in a concession go ahead and plan for it, he was God himself to us .

And thus the great man took great care and operated on our delicate daughter with great finesse and Shilpas heart was finally healed  .

Returning back to Cochin after recovering Shilpa started going back to Raksha with her mother every day

Premila would dress her in the best and most fashionable dresses and with all her problems she looked like an angel but as she grew so did her problems ,she could still walk only with support and still had toilet accidents ,this never stopped us from taking her out ,we were  adamant that she would go everywhere so we went for dinners in good hotels to holidays in hill stations ,at times we were embarrassed by toilet accidents and we also had to constantly listen to people giving free advice of why it all happened and what should be done all this something that all parents of the handicapped go through .

This gave us an inside feel of a parent and we became active in parents organizations

We were part of the founders of Mithram a parent group who planned to start a residential centre with parents running and later living together as a colony which today has become a reality in  Mulanthurthy in Kerala .

The state council for Exceptional children a Kerala parent organization was also formed to fight for the rights of mentally challenged and their parents and I was the first President of the same .

We organized the first parent meet in Kerala in Ernakulum with experts giving talks

We also started counseling and giving lectures to parents on rearing a special child.

 

The days ran fast with our work in this field and our professional duties in running our own clinic called Shilpa clinic .both our mothers and premilas  father  were like pillars to us during this time

Shilpa was unfortunately not doing so well by this time she was developing seizures or fits which was quite common for severely handicapped children as they generally had brain damage

We used to manage most seizures with our own medications but at times we needed to take her to hospitals and we were faced with some doctors insisting on procedures like lumbar punctures which is generally done to diagnose seizures but in her case as the cause was well known and as doctors we knew it was not needed we refused such tests and did not want her to undergo invasive diagnostic tests with no use whatsoever but only for academic reasons  .

But many a time we were shocked by the heartlessness of our own colleagues who insisted that she have those tests if we wanted to continue or else we could take her home !

of course there were also some who looked after her with so much concern and empathy ,Dr Venugopal pediatrician in City hospital was one such person we can never forget

just like in society we can never generalize in any profession there are always the good and the bad .

Even though medicine has evolved over the time developmental intervention was a far cry amongst even trained professionals ,trained as they are in diagnosis and therapeutics they find themselves in ignorance in a situation which doesn’t fit into their training and they have no answers to some questions ego too played a great part as ignorance to be accepted by one required a broader mindset ,we still remember when shilpa was born we met the Director of pediatrics in Chennai ,he examined her and told us that she had a developmental problem and a VSD but when we asked further on her developmental delays and the future she was likely to have ,he avoided our question and went on talking about her cardiac issue till we left the place  .this was a classical case of ignoring selectively some things for which one had no answers ,referring to a special educator or for physiotherapy and other allied health care specialists did not come easily for many specialists who felt how could they do something for which we have no treatment ,of course this attitude has lessened these days .

Avoiding hard facts  and skirting the main issue is at times used by all professionals when they are uncomfortable with the topic even I can be accused of the same at times so this is not to blame anybody but to show a picture of the predicaments a parent of a handicapped child goes through .

We both felt parent counseling was vital not only to accept the child positively but to move away from denial and depression and to be proactive in the development of their child

Shilpa was teaching us all along her short life so many things .

She also taught us the value of small events which could make one happy,

she opened a window into the grief in other people who at times had more suffering or less than us ,through pain life was more clearer but I wouldn’t recommend that route of learning for anyone as it is a hard way to learn indeed .

Life  was like the waves in a deep sea rolling up and down but if one maintained an inner calm like in the the ocean  deep one could get through it without a lot of misery .

Another message we got was that every person had their own joys and miseries and it’s different only by grades by time and by attitude or acceptance

Everything in life is relative

We found many parents who were extremely cheerful and happy even with a disabled child and so many problems they faced on the other hands some with normal children always worried on their school achievements comparing them to other children and were miserable all the time, so it wasn’t always what you got it was how you took it but still having a handicapped child physically or mentally is a considerable strain for any parent and they needed support.

Another discovery we made were there was greater acceptance of bad luck in poorer people than in the richer ones ,of course one can never generalize as there could be exceptions on both sides  ,probably for the poor the stakes are lesser and they carry on better ,the poor expect more miseries and are attuned to its coming there is also an inherent acceptance of deficiencies in their societies which accept handicaps and treat them just as someone a bit different whereas amongst the rich there is more of a societal pressure of succumbing to established norms and hence there was self-consciousness and lack of acceptance of their wards ,they were also more concerned and bothered of what society would think than the poor .

One good example was when we conducted the first parent seminar in Ernakulum a curtain raiser came in the newspaper a few days back announcing the event and inviting parents across the state to participate in it ,I got a call from a senior police officer who mentioned that his only son a sixteen year old  was  mentally challenged , the mother too was a medical professional and  in a senior position in the Government and they both held important positions .He was keen to know more about the conference I was happy that such people too could be a part of the budding parent movement ,he insisted that he would come home to meet us before the conference and we asked him to do so asking him to bring his son too ,we knew that many are not happy with special children being brought to homes or public functions etc and we made it a point always to welcome them to our house .

A posh car brought the official his wife and a very smart handsome 16 yr old boy who wished us smartly as soon as he saw us the boy obviously was not mentally challenged so we asked the police officer about his mentioning that his only son was a special child and he replied yes he is but we don’t take him out, this is our nephew and he lives with us and we take him out everywhere!

Then he disclosed the reason for his coming and it was to ask us for a nice place where his son could be left permanently to be looked after and he was willing to part with any amount for the said purpose!

He came to the wrong persons for we strongly felt that no parent should ever dump his child whatever be their disabilities and later when Shilpa school was formed too we never made it a residential one just to avoid such tendencies.

and thus time rolled on with Shilpa becoming bigger ,taller but also burdened with recurrent seizures or fits which was becoming intractable ,she used to love the wind on her face and I used to make her sit on my bike on my front as she was safely ensconced there and go for a fast ride she used to laugh as the wind blew her hair all of a sudden  she would become all silent and her head would lol down ,I knew she was about to get an attack of fits  and would immediately stop the bike and get an auto rickshaw to come back  but still I used to take the risk because she liked it so much .

Shilpa was eleven years now and as she grew older it was becoming more difficult to carry her when needed

other problems were also on the increase and she was unhappy most of the times ,once when Premila my mother in law  and my younger daughter Sruthi had gone to Mangalore to visit Premilas  sister and family ,on the return Shilpa had a long attack of seizure in the train and the next day was weak and drowsy ,she developed fever and we admitted to a hospital ,

we never knew Shilpa was going to leave us shortly and she just ebbed away due to a post ictal encephalitis though the best care was given to her till the end .

We were devastated at our loss

Many of the people who knew us found this attitude of ours strange

after all shouldn’t we be happy that we lost a disabled child .

true it was a relief for the bleak future of our old age when the question would come of what to do with a disabled child when the parents become too old to look after her or die before the disabled person a question that haunts most of the parents of special children ,

some of our friends even advised us to start living now as we had lost so many years in hardships !

But to us the loss was as much a loss as for any parent of any normal child there was no difference she was our daughter whose calm face at times wrinkled in unhappiness kept haunting us all the time.

This was all the more a strain for Premila who was pregnant at that time

 

She went through those empty days staying on and off in Anand Ashram near Kasargod and also attending discourses in local temples .

These are days  we still like to forget .

We also had very good support from some friends one particular friend an ENT surgeon would come home every day and stay with me for an hour hardly talking but only listening

(  Dr Nadarajan I can never forget you for that ! )

 

Shortly our son Shyam was born to us ,a new life like a gift for our loss ,but Shilpas looming presence had always been a part of our life even to this day after years have rolled away .

When the first anniversary of Shilpas demise approached Premila informed us of her plan to start a special school in her memory and no amount of dissuasion would stop her from doing that.

It was a small function when the Shilpa school for the mentally handicapped was begun in the house

we lived with just four to five children and one teacher just a small gesture ,the number of children multiplied fast and in three months we had more than forty children all coming in the morning and leaving by late afternoon ,our house turned into a school during daytime ,even the car porch had children there was now more teachers and some of them trained in special education ,we had one physiotherapist visiting us .

We were advised by many to start a charitable organization or trust so that we could avail of governmental help for our activities and thus the Shilpa Society for the mentally Handicapped was registered as a charitable organization its members mostly our friends and well wishers were mostly professionals who shared our concern for the handicapped.

Slowly shilpa society grew we were advised to buy a small piece of land to have our own building as the house could hardly contain the growth .

One thing that had amazed me over the years is the assistance that came from somewhere when something is done unselfishly it was so true in Shilpa society

The celebrity legend singer Yesudas dearly called as Dasettan by all Malaya lees once visited our school with his wife ,he advised us to apply for income tax exemption for donations and also encouraged us to build our own building ,his words turned true as we bought a small piece of land from one of our members amongst the small contributions from many was the one we could scrounge from selling our Maruti car and buying a new one with a loan

Dasettan himself put foundation stone and we managed to build the ground floor by a donation from TVS groups who were related to our president Dr Rangamani a retired civil surgeon with a golden heart.

The building was well planned and disabled friendly with a ramp to the upper floors it had a small garden and a small pool too,it had physiotherapy equipment’s and special education tools ,

we never imagined we could go beyond that but strangely when the ground floor was over we got a call from a German priest who had visited us an year back but later never contacted us ,father was bringing us a cheque just needed for our second floor

Amazing !

And then one more surprise as we finished the second floor a Parsi trust known to my aunt  because she had studied with one of the trustees in Mumbai helped us with money for the third floor !

Shilpa School had a wonderful building all within a year and our beloved Dasettan inaugurated it with so much grace.

The school would go on to see many celebrities over the years ,people in the area would look forwards to all annual days as they knew some superstar would adorn the stage ,

we were not celebrity hunters nor did any of them give us financial support and we asked them only for their time ,we called them as most of our students watched TV as their only entertainment and were delighted to see them ,

all creative people had tender souls and many of them empathized with our children ,it was again a lesson to us

Government grant was issued and the school became more professional, formalities also increased as we needed to maintain records stringently and the staff grew

Premila left me with two children to Secunderabad to the National Institue fo mentally handicapped to do a post graduate course on Early intervention of disabilities ,she also started her MSc in psychology by distant education so that she was more professional in her commitment .

We could get many neurologists orthopedic surgeons pediatricians psychiatrists to conduct clinics and give lectures in our school ,nutritious lunch was provided for the children and we encouraged parent participation to a large extent .

It was like one big family

Children were taken for picnics sports events even for a flight around Cochin courtesy Ari India ,

Premila spent most of the day in the school and would often be found with a child in her hip

 to her all were her children

she often used to say I lost one Shilpa but I found hundred Shilpas !

One Downs syndrome boy whose mother had serious burns due to an accident had no one to look after him in his house till his mother got discharged and he stayed in our house for more than a month we never thought of them as other children to us every one of them was our shilpa but later we came to know sadly that  not all parents felt like that !

Our Shyam and Sruthi grew during all this they too were tuned to our life styles and would often come to the school and help out ,our mothers took over their upbringing ,

I had joined Lakeshore hospitals with Dr V.P Gangadharan in medical oncology by this time

 he too was a great support to our activities and always used to praise the work done by Premila

Premila received many accolades and awards TV interviews and magazine articles were done on her ,she allowed all this so that her message to parents would spread more many parents came from different parts for counselling and advice every single service was given free of cost ..

The school had more than 140 students by now and more than 30 staff with 2 buses and one van used for transporting for a long,its building was by now too small for it and we requested for land at concession from GCDA cochin and were granted  a good piece of land in a prime spot ,the story was repeated funds came surely and slowly and the three storeyed building came into being

So many people had helped us over time which included from common men to men with power and influence in their positions politicians creative people industrialists merchants professionals all this came on their trust in our society its members its commitment and its transparency

Above all it was the dedication of premila that made all this happen

I had only been a silent supporter in her shadows

It was by now slowly and surely that the wheels turned to the another direction

Disgruntled elements rise in any venture especially in a place like Kerala ,

a small caucus of parents and staff who had axes to grind over time with outside political support made trouble

this grew with time  into mammoth proportions,

to our surprise one of the parent activists known to us for a long time joined forces against the society till this day we do not know what made him do that !

I had by then moved into the UAE for a job and Sruthi was in Trissur doing her plus two ,

pressure from Government agencies on the inducement of some influential people and a part of the media all joined hands and made a mountain out of a mole hill

Harassment often   causes frustration

 To someone who had dedicated a  life to the cause and  to someone who breathed the mission it was ironic that some of the very forces who benefited from that mission turned tables and were part of a group who accused and taunted ,

The mother of the Downs syndrome boy who stayed with us was also in that group, the majority were silent and never opened their mouth though they knew it was all wrong,

Shilpa society members stood as one against this unfair onslaught and reacted angrily at this harassment the school continued to work well though every attempt to close it including Dharnas, police complaints court cases and even human rights accusations were heaped on the school and society!

 People in responsible positions acted strangely at the behest of their political masters who mysteriously moved the pawns in the background

Even to this day it is an enigma how and why it happened

After all it was a small special school and a charitable society doing good work and why should someone wreck it but this was done systematically there is no doubt it was a well-planned move by forces stronger than we imagined.

Many powerful bureacrats advised us to leave the school so that they or the masterminds directing it could take over

We were frustrated and irritated at what happened and our society members were determined that shilpas school and society cannot fall for these small petty people,

I was also determined that Premila should face no more harassment for all the good she did.

she was an excellent physician and she could easily get an excellent job anywhere or continue to run her clinic

she had sacrificed her whole life for people amongst whom were such ungrateful wretches as only Kerala could provide

 sorry to say that  

Our society made a decision

 they knew that the fulcrum of the mission was Premila and her leaving would only lead to its fall unless it is taken over by an equally committed organization so that it does not fall into unscrupulous hands who were aiming at it .

The Amritha organization is well known in Kerala and around the world for its selfless services in the fields of education ,medical care disability disaster relief and in so many other avenues of charitable activity



 it functioned  under the blessings of Mata Amr
tanandamayi who was a great realized soul ,




society members and premila went to Ammas ashram and recounted the saga of Shilpa society and the need for an able and selfless organization to take it under its fold ,Amma consented as she realized the sincerity of the work done intuitively ,

slowly over the year the Amritha group ran the school and recently officially all assets were transferred to Amritha group without any cost considerations and with only the assurance of carrying forwards all its ideals in same and definitely a better manner considering the experience and commitment of Amritha to many causes

Shilpa school and society continues to live today ,and there are many programmes like training of professionals ,research programmes parent education etc planned with efficiency with the immense scientific and academic strengths the organization possesses .

Telling this story is not to accuse anyone or to cry over our bad times it is to share our experiences in life which showed us its two faces and often it is to narrate our moments of grief frustration and misery which was overcome with the courage dedication and  commitment of one  person whose heart glowed with the light of a mission ,it is to show that  good does win ultimately however much evil tries to harm it with all its powers ,it is also to shine a light on Kerala an enlightened literate state but one which also  has a minority who are bent on destroying anything good that happens by their chanakyan machinations .

This untold story is of the lessons learnt some good some bad

It is a saga of fulfillments and at the same time frustration

Should we have kept quite when our Shilpa left us

Should we need to have start a society for other similar children we could have just donated some money for the cause and continued to run a family with all its small pains and gains and live happily ever after

Did someone who decide to dedicate herself with pur love to all disabled children and their parents deserve the amount of hate that came because of that

No answers for such questions

If one would ask me I would reply a bit differently from my wife I would say it was not worth it and none of them deserved what they got ,but Premila has no regrest ,to her to this day and Iam sure forever every single shild in Shilpa school would continue to be hers and her would continue to bleed for them and their parents .

Bur one thing is sure Shilpa society will continue its children will grow and new children will join its staff would continue to teach and many of them would be committed to their cause ,the tribulations and trials which we encountered may be forgotten over times thought the painless scar would always knaw in Premilas mind that her sincerity and commitment was reciprocated in such a fashion

for this I would blame all who were  behind it and  the majority who kept silent !

Lessons learnt and to be learnt from  this saga of a disabled child

 

 

 

 


 

 


 

 

 

 


 

 

 

 

 

 

 

 


 


 


 

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