Cerebral Palsy and Holistic Management - Part 1

In this article, I will describe how we combined treatment and education through a new holistic model under the umbrella of a special school which, although very common in developed countries, was unique and the first of its kind in India. The main aim was to alert the nation to the needs of children with cerebral palsy (CP) under a special school setting. It established the first innovative model for the education of children with disability (specific ally children with neurological and physical disabilities), combining education and treatment under a social setting. Here, I describe a new methodology and model of rehabilitation approach and care toward children with serious neurological insult, such as CP as well as other physical disabilities. I will discuss five issues under 2 Parts. (1) What was the raison d’être for my doing this work? (2) What was the situation like then in India? (3) How did we change the situation? (4) What was the outcome? (5) What were the innovations introduced? WHAT WAS THE RAISON D’ÊTRE FOR MY DOING THIS WORK? A personal reflection My personal interest in disability is because of my daughter Malini who was born with CP. It was 1966 in Calcutta when my daughter Malini was born. Knowledge of CP was virtually non-existent in India at that time. Neither me nor my husband had any idea of what CP was. In India’s premier institute in Delhi, in front of a group of young interns staring at my weeping daughter Malini, the doctor examined my daughter and said brusquely: “Your child is a spastic. She will not be able to achieve very much as her brain is damaged. She will be “a vegetable” and there is nothing much you can do about it… Once the brain gets damaged, it remains always damaged. The damage is irreversible.” I came from one of those privileged highly educated families of Kolkata, where there was a strong combination of British and Indian influence. We did not accept what they said. My husband and I were young parents, 22 and 24, and we ran from pillar to post in desperation, trying to understand what had happened to her… my husband had just returned from finishing a Tripos in Cambridge, was very dynamic in his decision-making ability, and finding nobody who understood her, decided to go to England in search of treatment for Malini. My sister had just got married to a doctor living in the U.K. My brother-in-law, Dr Samiran Nundy, leading gastroenterologist, at present Professor Emeritus of Sri Gangaram Hospital, was the Registrar at Addenbrookes Hospital, Cambridge University. They welcomed us to their home, and he arranged all the appointments to assess our baby daughter, then 1½ years old. Malini was assessed as above average intelligence (130 IQ). For us, the time in England was key. Professionals treated her and me with great care and great sensitivity. Their whole approach to her changed our lives… my daughter flourished. I decided to study more on the subject and did my first course at the Institute of Education in London and became a Special Educator. Because of those early days fighting and battling ignorance… because of the appropriate and effective management Malini received, today she has done her double Masters… one in Gender Studies and the other in Information Technology. She is presently the Diversity Officer at Tata Sons in Mumbai. It is her own courage, grit, and determination combined with the best services she was exposed to, that got her there (I also have a very good son Nikhil Chib and a very supportive husband Sathi Alur, who has always taken a great interest in the family and stood by whatever we have done). In 1972, when we returned from England after 6 years, there were still no special schools for children with CP in India. My first thought was, what about the other Malini’s… what was happening to them? How to educate other children like her? They should get the same kind of services as Malini, who was privileged enough to go to England. However, it was not easy. The situation was fraught with negative responses from prominent people. I faced a barrage of opposition and barriers…. The first question I was confronted with was… Why educate them? An eminent citizen of the city said, “Why bother Mithu, there are hundreds of normal children needing education?” The Health Minister met me. He asked me “Are you talking about plastics?” He hadn’t heard of spastics! AVice Chancellor said when Malini was ready for her Degree and I wanted to introduce reforms such as increase the time given and introduce a writer, … “Why do you want to bother to make her do a BA? It is such a useless examination let her stay at home?” Entrenched mindsets needed change, and such questions made me more than determined to change the scene. HOW DID WE CHANGE THE SITUATION? 1972: The Spastics Society of India, Mumbai is born Fortunately, the late Prime Minister Mrs Indira Gandhi did not have such a mindset. She met me, heard my story, and reacted with great compassion. Through her intervention, we were given a beautiful bungalow overlooking the Arabian Sea, by the Army, to start the first experimental school and later a plot of land to build the larger National Centre. Our fi patron was Nargis Dutt, the famous actress and social worker. She was the queen of Bollywood, and her presence added glamour to a situation fraught with despair, gloom, and negativity. After her death, her husband Shri Sunil Dutt took up the mantle. In 1972, together with a few friends and members of my own family and parents of disabled children, we set up an organization called The Spastics Society of India. I was fortunate in having a very experienced physiotherapist from the UK. She pioneered the treatment of CP in our country, setting up the first treatment and rehab centre, in the management of CP. We both endeavoured to make it culture-specific to our needs and developed the department of treatment and care. Being from the UK, she had that special approach which I had met up with… of great sensitivity toward the feelings of parents and the child. I being a special educator, we were able to combine our expertise to create a holistic, cohesive team. Initially, because of the lack of knowledge and experts, the project was essentially an Indo–British collaboration. The first professional for the Centre was myself, Mithu Chib (nee Bose, now Alur), by then, a qualified Special Educationist from London. Two other professionals who joined the Society through the British Council and the Overseas Development Agency (ODA) (ODA now called Department for International Development), were Leslie Gardener, Principal Psychologist of the UK Spastics Society and a speech and language therapist, Asha Kumar. A technical exchange program was setup, and a team of professionals from the UK regularly worked with us. WHAT IS CEREBRAL PALSY? CP is an umbrella term for multiple disability (multidimensional implications). CP is a medical term. The jargon term is “spastic.” (The word “spastic” was rejected as it was used as a kind of abuse). Children with CP may be ataxic, athetoid, spastic, flaccid, or rigid; their intelligence can range from normal to subnormal. There may be associated problems of vision or hearing; speech could be affected. They could also suffer from specific hearing problems and behaviour problems making social adjustment difficult. The cerebral palsied child therefore is a multiply handicapped child, and this is more the rule than the exception. THE BRAIN Here is a very simplified diagram of the brain – indicating some degree of localization. The brain being as nebulous as it is, with delicate brain cells overlapping each other, there is no one, clear-cut, specific, damage. The damage is diffused rather than localized, causing many areas to be affected and presenting multiplicity of problems. The cortex is the outer layer of the brain and has to do with and The child with CP has of and of and to the cortex of the brain to be the of the cerebral palsied It may both of one of the both the or all the cortex and in the of the the and the to make and when the of the brain are affected. The main of the CP is the which and with the normal of the whole palsy a range of associated and as at the of the brain of the such as and It is to the brain which the with the There is no one who has all the CP many in no with CP are are affected that they have no may be much more the damage of the brain as leading to and other of many children with CP also have special which make to They may well have than average many are because of their They may it to their and may to be some of who to be are in the affected in their They may be in their or they may have with their or with the of are to and can do for CP is not It is for to in the same It is a leading to such as and speech hearing and or and and problems at brain diagram damage in of cerebral being a which is and needs a management that has a A team of have to They are the such as and speech special social in with For the of the or the team has to and in an We with our and of children with CP a holistic because he is born with an a normal child has the to In is the child who has a neurological or as lack of neurological her of the to It is for to to from intervention, management in as well as are a child with CP is than a normal child of the same it is now the that this is not because he is from brain damage also because his are as He is than the normal child, and there being on the and the of he remains The of a cerebral palsied child is not the of However, are still to all the is handicapped child a new and in In a handicapped child, no can be and used for For each child, a will have to be used to his unique The 2 the management and The of Children with 2 has how the first years of the and and we have that whatever the child is exposed to in the early years, good or or will its for the of its It is now an that just as the needs as and the for its own and children get more leading to treated An is for the and this both and as well as who are the of the and a of knowledge the needs of the child. A Our main aim when services introduce a new model of treatment which at the holistic management of CP which and early for children management management in introduce and of needed in the treatment the of the of with disability through and alert the about CP and introduce For treatment and management to be it is to have a or done of the and and of the child with CP. be done in one a of time. It should also be done in with both and that the problems can be understood by both parents and and that a good at Here, it is to on parents the for of and treatment after the child as this is to toward good this parents may still be in a of having heard that their child is it is a time for delicate be and talking to parents, as there is a of get they they are doing that will their child. not the up of The are when can a with the parents, their and then start about their handicapped child. The question which is asked is when should treatment A to this is as as of the and early treatment will treatment is the of as in the or as in the and It then for the brain to the of trying to the treatment from the through the physiotherapist can the of the of which of physical is that through of the and a of is it is through in a group of in an that a degree of in its can be the fi in areas of or on the child being to in all the to The or family the the aim of all treatment is to get in It is to the child more which her to in and management CP is a and of brain leading to of It could also be as in a It was the that CP was always associated with that the brain damage was and to the as well as the areas of the We now that this was Studies in the of the of intelligence children with CP have that about of the children have an intelligence the normal range above There is a that physical damage damage as A with a could not be and be a or of course we is and not at of children with CP are normal in The areas that our thought are not damaged. Their of and and the they can from They could be to their their are They what has as “a that a that What are the in the situation? in the of or and to a or speech or the lack of causing a in or and behaviour problems such as and on were In a normal and a child to to and and to any that and For in in and the other the child with have in and and He or she have a of their own from about or of be and later this lack of to in from from and many other problems in and In the this and have to be in other such as and and were for the first time. was on those where the child could and up on their rather than their with schools in the of to a in the and the to the to on their of treatment We the of to a baby had what was as and by its as a examination of the child is in and on the responses a is the to a of the and appropriate program for the child. we the child with CP will suffer from or in the of a doctor with cerebral palsied children in the trying to make more He that he not a child to or He the for doing through the being of the and and this is the and will The program is then up in the and are to a of the time. Through the the the or the at which the child is presently us of treatment and the the which has and by and The of treatment by the are of the which or normal and of normal I have of there are many to to one we like a more where they can of treatment appropriate to the needs of each child. the on like to with on our own with there is a great of the child finding and of and lack of setting it is and to a approach to should be it a to the and is a or for the child can be to be when and in are and there is by the child, rather than done to the child by the kind of will to an by the child. is for in the child and for in making the child that the is not the child is able to her presence or the presence of any and some of the special in the can be For A few issues we as of treatment The that they is not the that they and and the of their disability the management in the for of the special with a to a to the from like or are given to each child to Children can be made to in or with to the may be such as more and of special and will be we that children with CP have a range of are through early good as well as the or the problems such as and on may be about our and how much it are for early the knowledge of our is and it will all Children from CP have and to be and to be A and which can are not is in the of one gets children with CP of above average to or in the main areas of being damaged. is a of and from one to through the of The or child with to will have to in the the used when is – we do not or in the we are to, because may do with a of that of and that will not or as a of used in the to to – For very children who are where a child or to the or and can be made and used for language and making it for the child to when The used in the school for children is of course a special for There are many of which may be by or by a or or by There are which can be worked through and The of and has for with CP through and to A rehabilitation program from all The team to each other to to a on a common each team worked toward this there are The aim was to education and with and the examination to which Malini had to in in India, I decided that one of the fi areas that the new organization should was and were set up for It is not to assess children with multiple such as CP in a it needs a team of who understand the of the child and the it is a time of and for a and needs the of were not to their families and the child, and we the new approach of We as early as days and with the The team the with the child, not as a disabled as a child A good is the to in at and and disability of the child. The were the for the rehabilitation to a with the parents and the child and their to then start about their child. be and talking to parents as there is a of the early the physiotherapist can to parents How to the child management The best for The and are to be for and The of living or The examination A hearing of and management we in 1972, or speech was a to and with the parents was The of to the what is being done or the of this was Children were more of a to be A leading doctor of CP in said are and you their fi with – they do not Being a I a strong on parents as members of the team. The team in that in the early our who is an is not of what has happened to or It is the parents who are in a of Their their and about what is to to their child, became our the up with the family is because parents are our main and They are given in the and we in with the on the with a The rehabilitation team the all and the A program was by each professional for a child. program was to the parents in with a on how they could at the with their child to The then could also do with their child at program was changed regularly on the in the child. was in In the early and with the parents were A medical approach to the examination became our in the and to be In our new parents were educated and to their child and at In to their children at home, parents to the of CP and the organization as of and are now in management In the Indian there are in from or strong as more than had to The Indian also from from the having families of and family members all can in time to the child. with the parents to create a at WAS The of any organization on of and on a were set up to the We for parents, and The aim was to build A in Special Education and was in A in was after for was able to new a of to this very and to all India. A course for professionals of It was as a on course for who at that time about the needs of children with disabilities. course at the of the professionals to a combination of to at the social with the and The of the is An for has set that to and to in their to education India the the and of The course is with issues and is in the social model of disability rather than an medical from the Centre for International Health the is by the Council of the UK. with the to make India a In the early when we returned to India from the UK, I was to nothing had changed we had years CP was not one of the disabilities. affected CP were their needs were not The I had that we or do that disability is a I now that it is a not a and that as the main of a a in for all its We had not at the We had let the Education is a for all children, of or we needed to and in at a of the that was done from in I with together with our from all the and from with my husband Sathi and I the who change in India. The used was more of as well by of and the country, through the of the a multiple the of change change change change at the National and International with and were We and at the and with the of Development of and of and Development of Health The The The were to the National Health National program called the and in the International on were to the through the of in from both the and The main aim was to the that can do education from the and that each model has to be and culture-specific to each and made a technical a very strong for children, with CP and other physical disabilities. combining education and treatment were under one early where were assessed to create an that children with CP have early and management A approach was where special social and worked together with took and to Children with a few were able to do and with a in the and with the that it was to be educated reforms took children to have and get time for their school and have able to Education and Education and in and They have at the and have set up their own we with at the of our who have and professionals in many other of have developed in in the management of their children was a which us a strong to build It the that expertise and knowledge is to achieve the should be given with a approach needed for disability The first for set up in India services knowledge to was A change of and and the of the knowledge became the of the became by the of and Council of India and have India and 22 of the the there was now an to in the of the education by and a of who in the of children and in their to study by from the of each other has taken The to Education today it to all children with the to education A question on disability has now in the The with was in and was and to the A new of and was was a which the children who had of the program a which is the today in called the which had by the has as its members all Education of the of India as well as eminent where I was those In we had made on a change all the which were the in India, are now being in all A of our has that neurological disability and which had not the is now as one of the by the of India’s of and The idea has always to services in this A of and with our on our first as the Spastics Society of India has the of services at and and through their the in services in their which in services to the needs of each child with treatment and appropriate rehabilitation of CP. of the have the same combining education and treatment under one no one is they can be educated or not how they should go about it in to the and of the and of interest There are no of