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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