Trapped in a Body that refuses to Obey- Cerebral Palsy

Prachi looked at me from the corner of her eye and smiled as I entered the classroom. All other children were distracted too. One child got up and limped towards me, stretching his trembling hand towards me. I held his hand tight and guided him to his seat.

“Sit and do your work” I said giving him a soft pat on his head and then walked away towards the seat where Prachi was seated.

Prachi moved her stiff muscles, holding the pencil box under one arm while she struggled to extract the pencil with her tightly stretched fingers. Repeatedly she tried grasping the pencil to slide it out from plastic clasp of the box. Her movements were jerky and abrupt, it appeared to be uncontrolled and without purpose. Her body moved and suddenly she fell off the seat, with her legs in scissor-like position and her hands stiff, up in the air. Her classmates startled, all rushed and stood around her as she lay stiff on the floor, staring at children around her.
“Move back, go back to your seats” I said while I held her under her arms, lifted her heavy body and helped her sit on her seat again.

“You okay? Be careful” I said as I removed the pencil from her box and placed it between her fingers.

Being careful is not easy for Prachi, especially if she lives in a body that refuses to obey her.

Ten-year old Prachi suffers from Cerebral palsy, a condition caused by abnormal development of brain and nervous system due to which there is stiffness in the muscles and constriction of motor activity. She has problems with posture, balance, walking, speech, swallowing and other functional coordination.

“When Prachi was born, she did not cry” says her mother, Anita Chavan, “there was not enough oxygen to reach her brain as the result her brain was damaged.”

All her milestones were delayed; she could not control her head, roll over or sit without support. Over the years, she has shown little progress but she needs help in most of her activities.

Cerebral palsy can result from the damage to certain part of the brain which can be due to prenatal, natal or postnatal factors.

Risk factors linked with cerebral palsy can include Rh factor incompatibility where there is difference in blood between mother and fetus; however this is almost detected and treated in women who receive proper prenatal medical care, sometimes it can be genetic or hereditary condition, There is a bigger risk if there is complication during labor and delivery due to which the brain does not receive enough oxygen.

“She is quite normal in other ways,” says her mother, “She understands everything and is intelligent too. She is quite independent and does most of her thing on her own; I help her only with brushing her teeth and combing her hand.”

During the lunch time at school, her classmate brought for her a bowl of water and helped her wash her hands. She unlocked her lunch box independently and clapped her hands when she saw the Aloo Paratha in her lunch-box. Her classmate rolled out the Paratha into a small cone and placed it in her hands. She started to chew, masticating each bite slowly, with her saliva dripping from the side of her mouth.

The problems and disabilities related to Cerebral Palsy range from very mild to very severe. Their severity is related to the severity of the brain damage.

At the age of 7 months, Prachi suffered from minor fits. Her mom took her for many tests, visiting various doctors and hospitals. At Nanavati, Mumbai, she underwent EEG (Electroencephalography) for the diagnosis of seizure disorder. Physiotherapy was then suggested for relief. Once a year, her mom, Anita Chavan, regularly visits a hospital in Nagpur where parents of CP are given training in physiotherapy to help their child. To help her child further, Anita Chavan has even completed the special education Teacher’s course from NIMH at Navi Mumbai.

While special treatments are given to the child to develop specific skills, the overall goal of treatment is to help the individual to live the life as normal as possible. This can be accomplished by variety of different approaches managed by team of professionals like physical, occupational, psychological, medical, speech therapies, etc.

Physical therapy involves stretching, bending, yoga, and other physical exercises to strengthen the muscular reflexes. The focus is on developing specific skills such as holding the head straight, sitting without support and walking independently. Occupational therapy involves development of fine motor movements like feeding, grooming and personal care. Speech therapy is used to overcome communication problems. Many children with Cerebral Palsy have limited and slurred speech because of the poor muscle coordination of tongue and lips. Medical therapy comprises of all the medical problems like seizures, breathing, feeding and digestive problems and their treatment.

Prachi is mentally alert child and was admitted in a normal playschool in Bangalore at the age of 3 years. When her family shifted to Kharghar, Navi Mumbai, she could not locate any special schools for spastic in her area. “I want to integrate her into a normal school” says her mom, “the only special school for Spastic is in Bandra which is very far. I wish there were more school for such children in my area.” She was admitted to Swami Brahmanand Prathisthan, Centre for mentally challenged in 2010 where she is presently attending regularly. She is able to read and write alphabets and numbers, also knows to read and write her name and postal address and is learning many other activities.

Its play time and Prachi walks slowly down the stair, balancing her weight with both her hands on rails. She is social and follows children to the playroom. While other children run and jump, she squats on the floor, looking around for some Montessori equipment to pass her time.

Ps: National Cerebral Palsy Day is celebrated on 3rd October 2011. This is celebrated in memory of Late Dr. Dr.P. K. Mullaferoze

“Cerebral palsy is a multifaceted problem with many systems of the human body which are affected. This requires a team approach and infrastructure in its management. Sadly this is lacking. As a result of lack of awareness, patients present late, much beyond the golden period when a definite impact can be made by treatment. Hence the need to create social awareness and to sensitize our population and government to the problems of cerebral palsy patients is acute.”- Durga Mallikarjuna

Joys and Challenges of Teaching Mentally Challenged

It is time for games. Each person is given one chit containing the name of the animal. At the sound of the whistle, the participants unfold the chit and make a sound of the animal searching for similar sounds. Whole room is filled with different sounds, some baying, some mooing, some quacking and some barking, within 2 minutes one group has found the family of four meowing cats and is the winner. The winners are the staff of a special school and the game organisers are the parents of special children. Celebration of teacher’s day is in progress and special children are having fun watching their teachers running around making strange sounds.

Teachers around the world celebrate 5th September as teacher’s day. The birthday of Dr Sarvepalli Radhakhrishnan came to be celebrated as Teacher's Day when, one day, some of his students and friends requested him to allow them to celebrate his birthday. In reply, Dr. Radhakrishnan said, "instead of celebrating my birthday separately, it would be my proud privilege if September 5th is observed as Teacher's day". From then onwards, Dr. Radhakrishnan's birthday is observed as Teacher's Day all across India.

The greatest joy is when children show their appreciation to their teachers by singing their favorite song, reciting a poem or giving a rose. But teaching a special child has a joy of its own.

“You experience the purest form of love when working with the special children”, says Sukanya Venkatraman, the Principal of Swami Brahmamnand Pratishthan, Centre for Special children. “They are the most innocent beings that I have come across in my life. They are totally selfless and I have had the opportunity of learning the concept ‘Love without any expectation’ while teaching them. Their genuine appreciation, their thoughtful gestures fill me with wonder.”

In the early years, during her training period, Sukanya was scared to teach the children with severe behavior problems and had no idea how she would handle that, but experience over the years have helped her overcome her initial fear and apprehensions. “More than handling the behavior problems of the children, handling their parents is more challenging.” She says. “Helping them accept their child’s handicap and making them believe in themselves and in their child took the utmost effort. Most challenging is finding the job placement for our well-trained students.”

Swami Brahamanand Pratishthan was founded in June 1990 by Shirish Poojari with just two children. Over the period of twenty years, the school has progressed considerably and has 150 students on its roll. “I am happy to see the development in the children, and see their progress in daily life activities”, says Shirish Poojari, “In our institution, children are trained according to their ability and our goal is make them economically independent but our biggest challenge is funding and keeping the school afloat. When the children are older we are not able to keep them in school for long and there is need for some residential home where they could be looked after and work in the sheltered workshops.”

“My greatest joy is when they bring home the certificate of appreciation, I love working with special children, when I reach home at the end of the day, I am refreshed and active” says Madhuben Shah, the drawing teacher. “I want them to bring out their artistic expression through their painting. My biggest challenge is making them focus to attain near perfection by drawing and painting.” Madhuben teaches drawing starting with basic strokes, graduating to more complex designs. One of their paintings was appreciated by my friend from US and she bought it on line. The children also make beautiful greeting cards and colorful posters.

“Being in their company and working with them is a joy itself” says Sunit Marwah, who is in charge of the vocation unit since last five years. There are various activities in the vocational unit such as making paper-bags, Rakhis, lamps, toran, pillow covers, duster, hand-bags, beaded jewelry, chocolates, ground masalas, etc which are later sold during exhibitions and children are given little stipend for their work. “I like to see the joy on their face on completing a certain articles and this gives me the greater joy. My biggest challenge is taming an aggressive child.” She talks about one particular child, Rohini, who was so aggressive when she came to school, she would throw temper tantrum, fling things and create commotion in school, but with little understanding and love, she has been able to discipline the girl.

“When I came to teach the special children I didn’t know what was expected of me” says 43-old Anita, who has been teaching computers to the special children since last 11 years. “Now-a-days there is wealth of information on internet and it has become easy to plan a proper lesson program and follow the particular format but during those days there were no proper reference books and I had to adopt trial and error methods to understand what works and what doesn’t. My biggest challenge is when the children are not in the mood of doing a particular activity and I am forced to steer my activity to their liking, sometimes I am not sure if the child is hearing and understanding me at all. But my greatest joy is when they are able to follow my instructions and produce good results.” She proudly talks about her student who had won the competition at state level on art work produced on computer.

While teaching a normal child is a challenge, teaching a special child is double challenge. Teaching special children involves parents, social workers, society members and other professionals. It is the continuous process. The children tend to forget easily and they have to be taught again and again till the child is able to understand the concept and use it to his daily life. The simple adding and subtraction is taught in different ways to suit his level of understanding.

It is not easy for parents too.

“I always worried how my child would manage when she starts menstruating, but I am glad that she has managed quite well” says Madhu Verma, mother of 17-years-old Sneha. Sneha is Down’s Syndrome child who surprises her mother by watching ants walking in line, of running after soap bubbles and gracefully shaking her hips to the rhythm of the music. “I have learnt to appreciate her and see the world through her eyes” says she with a smile.

The biggest challenge the parents of the special child face is to plan their future. “My son is 22 years old and the extreme pressure is ‘What next?’. I worry about the guardianship after our existence, of financial investment and how these investments will guarantee their future, about the family life of my son, whether he will be able to nurture a family of his own” says Davis Ipe, father of Neil who is learning some vocation skills at school. “Most challenging is the fact that we are growing older and weaker everyday and to find the perfect substitute to replace parents is our deepest concern.”

The special child unaware of the challenges that are lined up by society, lives each day as it comes, enjoying the present moment. He is unhappy when in pain, aggressive when things go wrong and claps his hand with joy on seeing his smallest achievement. His teacher and his parents try their best to block his pain.Happy teacher’s day to his teachers and his parents!!
 
excerpts from this article can also be found on Women's Web Magazine

The joys of working for no salary

by  Raamesh Gowri Raghavan

The list of joys gained when working at a job with a salary can be detailed as follows:


1.Receipt of salary in bank account

2.Payment of dues, bills etc without late charges

3.Relied at timely payment

These are all I could envision. I have a distinct feeling that nagging bosses, unreal deadlines, conflicting ethics, family pressures, unfulfilled aspirations and suffocating compromises have a tendency to more than cancelling out these joys. Yet, the bills get paid, and that is {insert swear-word here} important.

Then comes the list of joys gained for working without a salary. It could be a bold step into entrepreneurship, or volunteering for charity. I have neither the money, nor the boldness to throw away my job (however I may itch to fling my resignation at my bosses’ faces) and start a business venture of my own. Nor do I have a great idea yet that a venture capitalist will throw money at, though I can dream of unsecured loans by a deluded investor into some grand chicken-egg-chicken-egg-chicken scheme I will think of. So all I can do is select a charity and volunteer for it.

And that, trust me, has been one of the best decisions I ever made in life. (In fact, I think it ranks second only in my decision not to marry or have kids). Five days a week I slog for an ungrateful, underpaying company (as every hard-working employee thinks s/he does), keeping the rational and calculating part of my brain active, while placing the emotional and aesthetic parts of it in a coma. On Saturdays, I switch the rational calculator off, and the emotional aesthete comes alive. I pack my bag in the morning, to catch a local train to Belapur.

For the last couple of years, I have been volunteering every Saturday at Swami Brahmanand Pratishthan, a school for the mentally retarded. Despite its religious-sounding name, it is not affiliated to any math or peetham or trust. It was founded by a gutsy special education teacher, Shirish Poojary, on 7th July 1990 (Guru Poornima that year), and named after her mentor, Swami Brahmanand*. I like this particular Swami for he made no effort to set up a multi-crore religious trust operating several lucrative colleges, lived in modest circumstances in Ratnagiri district, and died as unknown as he lived. His only legacy to the world is this school set up in his memory.

[A note on the phrase ‘mentally retarded’. Some of us try to be politically corrected and say ‘mentally challenged’ or ‘special children’ or ‘differentially abled’ instead. It makes no difference to the children themselves; they will never understand. Besides, it is misleading. Many have suffered, because of genetic defects or because their mother contracted some unfortunate disease while pregnant, or because there was an accident during delivery. It leaves their mental development retarded; often they remain stuck at the mental age of seven or eight for the rest of their lives. They cannot do anything special, or different, nor can they rise to the ‘challenge’. ‘Mentally retarded’ is to me the right phrase, for it immediately alerts the ‘normal’ people around them that there is a problem, and that it needs sensitivity and empathy, not political correctness.]

So what do I do in this school? I’m not qualified to teach the students anything (since I have nothing I can teach them, nor anyone else), so I do whatever is assigned to me. Some bit of blogging the school’s activities (http://sbp-pushpa.blogspot.com/), acting as photographer during school activities, and generally doing paperwork. This includes writing letters to sponsors, updating records of sponsorships, drafting other letters, and a whole lot of similar things. Which I would have considered immensely infuriating had it come with a salary attached. But since it doesn’t, it is very interesting, and gives me a great deal of happiness.

The minus side is that it is a drain on my finances. I have to spend money travelling to and fro every Saturday (and because this is me, snacking on the way). And I have taken up sponsoring half the expenses for one child’s education, which comes to Rs. 12,000 a year. But if I grudge even this, then deep inside, something within me is not human at all. And since I have no wife to be nagged by or no children whose complaints irate neighbours bring home everyday, what am I to do with my salary? After all my insurance premia and home loan EMIs, helping a child along seems like a good idea for the money. My only wish is that I could do more. Which would mean finding a job with a nastier boss, outrageous clients, meaner deadlines and tearfully boring work, because that seems to bring in higher salaries.

The plus side is that I get invited to all school dos, the teachers treat me as a friend, and the founder (Mrs. Poojary, still going strong these 21 years) is quite fond of me. That means I can get free chai and snacks at school (which over-compensates the overall effort I put in). The school dos are a real treat, for while these children cannot cheat, trick, get angry, run for election, lie, plot, complain, deceive, crib, steal or willfully inflict violence (like normal, intelligent people do all the time), they can really sing, dance and remain cheerful through thick and thin. Most Saturdays I don’t get to meet them, because they get that day off, while teachers are doing up reports, holding parent-teacher meetings etc. But the days I do get to meet them, I manage to win a smile from one or a few. That can keep my spirits going for days on end.

And then I can talk to the parents. Dealt a cruel black swan by life, knowing their child will remain a child for the rest of its life. They manage, they cope, they even redesign their lives around their child. While their normal children grow old, find jobs and get married, there is one that retains its innocence forever. One that laughs at the littlest thing, complains about nothing, and accepts its lot with the stoicism that the greatest philosophers cannot achieve. Who will live and die without knowing the evil in the world. After that, who am I to complain about a cribbaceous boss, or cryaceous juniors?

I’ve managed to recruit my parents to the cause. Which means that they do not crib when I’m off on Saturdays, do not crib about how the money could be better used (which means it be spent mostly on them, or saved up for spending on my future children), and gladly agree to do my share of the housework. Not that Saturdays are an excuse to escape the housework (since their agreeing to do housework does not mean they actually do it; it jumps on me the moment I enter the house). Lately they’ve even been willing to buy some of the things the children make.

My sister is still a great critic. That’s because she is in the line of dealing with mentally retarded children herself, and she disagrees with the vocational approach taken by the school. Though I am sure she will come around, as she knows the school better. For who will take care of a child who is abjectly poor, is too mentally retarded to do even simple things like eat its food or go to the bathroom, and to make it weven worse, is a Dalit from a roadless hamlet? It takes a great amount of effort to get them to learn even a simple skill like stringing beads.

But they have an incredible sense of beauty. I’ve seen them struggle to paste bits of paper and thread while making rakhees (which are on sale now). But the choice of colours, the patterns they make, their sense of combination and contrast is unbelievable. They seem to me the very paradigm of the ‘idiot savant’. Incredibly stupid, and yet incredibly aesthetic. A genius buried irretrievably deep by an accident of birth.

I used to think I was sensitive and could understand people. Till I started volunteering at my school. Now I know there is a lot, a great lot I have to learn. To learn to be happy knowing full well I have nothing that is truly mine. To be truly sensitive to the needs and requirements of people who are vastly different from me. To understand that there is nothing superior about me, to not patronize, to not do anything I would hate done to me.

One day I will in fact fling my resignation on my bosses’ faces and work at my school full time. But there is such a thing as a grumbling stomach. Till then, joy is confined to Saturdays. The joy of enriching work at no salary.

cross-posted at Raamesh's FB notes

Parent – teacher relationship

Devang ties his shoelaces, looks for last time in the mirror, takes his school bag and walks down the stairs. His mom watches him from her balcony and waves good bye as she watches him disappear into the crowd. He walks down the narrow lane that is populated. There are shops on either side of the street. He stops at sweets shop and smiles at the shop keeper. He does not speak but the shop keeper understands his gestures and has known him for many years. He hands him one sweet without charging him for the same. Nibbling on the sweet he reaches the school bus stop and waits for the bus.

But he is five minutes too late. Not finding Devang at the bus stop, the bus driver had assumed that he won’t be coming to school.

Devang does not know that he has missed his school bus. He has no concept of time and he waits at the bus stop for five hours till the bus comes back after school hours and bus driver spot him at the bus stop and asks him to go back home. He is a special child. He suffers from Microcephaly, which is a medical condition in which the circumference of the head is smaller than normal because the brain has not developed properly or has stopped growing.

Both teacher and the mother did not worry about Devang because they were not aware that he was at the bus stop for five hours. Both did not know that he had missed his school bus.

This problem can be avoided if there is proper interaction between the parents and the class teacher. The teacher of a special child should be aware of the child’s problem and should find out why the child is absent from school before the school prayer assembly, preferably by making a phone call to the parents to ask the reason of his absence on that particular day.

Keeping and maintaining parent-teacher relationship is the first step towards progress of the child. Parents of the special child should be involved in child’s activities. All the activities that are carried out in school should be continued at home. A proper record of the child’s activities could be maintained by both, parents and the teacher, so that there is a follow-up. If the child is doing certain activity at school but is sitting idle at home, then the progress is slow. Most of the confrontations between parents and teachers result from lack of communication from school to home.

The parents can be informed about the classroom expectations for student’s behavior and work product. They can be informed about the daily schedules at school, what the management and discipline strategies used on each child and what progress has been shown by the child. It is important to keep the parent informed about the upcoming events, units and due dates. They can also be informed about the skills taught and the learning strategies used in the classrooms. This kind of information involves parents and keeps them updated about the child’s activities at school. If the parents have an email, teachers could regularly post information and keep them updated. If the child shows some unusual behavior at school, parents should be informed immediately so that problem can be detected and immediate attention could be given to child.

Interaction is very important between parents and teachers. Sometimes parents have one point of view while teacher have a different approach but to maintain a common harmony is what that determines the progress of the interaction. To create a positive interaction with the parents, it is important that teacher does not wait for the call but makes call regularly to build up the relationship. Talking in positive way, they can get the information from parents about the behavior of the child at home and his relationship with other family members, his likes and dislike, his preferences in his food habits, his relations with neighbors and all other details. The parents should also be given the liberty of communicating with the teacher when the need arises. When the parents know that the teacher has interest in their child she is likely to be more co-operative in positive discussions.

Knowing the child closely helps the teacher understand him better and this in the long run helps her in organizing the lesson plan for teaching him in the creative manner.

Autism’s First Child - Magazine - The Atlantic

As new cases of autism have exploded in recent years—some form of the condition affects about one in 110 children today—efforts have multiplied to understand and accommodate the condition in childhood. But children with autism will become adults with autism, some 500,000 of them in this decade alone. What then? Meet Donald Gray Triplett, 77, of Forest, Mississippi. He was the first person ever diagnosed with autism. And his long, happy, surprising life may hold some answers.

"How we respond to those needs will be shaped in great measure by how we choose to view adults with autism. We can dissociate from them, regarding them as tragically broken persons, and hope we are humane enough to shoulder the burden of meeting their basic needs. This is the view that sees the disabled in general as wards of the community, morally and perhaps legally, and that, in the relatively recent past, often “solved” the “problem” of these disabled adults by warehousing them for life—literally in wards.

Alternatively, we can dispense with the layers of sorrow, and interpret autism as but one more wrinkle in the fabric of humanity. Practically speaking, this does not mean pretending that adults with autism do not need help. But it does mean replacing pity toward them with ambition for them. The key to this view is a recognition that “they” are part of “us,” so that those who don’t have autism are actively rooting for those who do."

Read more at

Autism’s First Child - Magazine - The Atlantic

Management Development Program in NGO Sector

Recently I attended the Management Training Workshop for NGO’s and it was difficult to open my eyes as early as 6am, actually torture…..Must they have sessions as early as 8:30 am and make me set my alarm so early in the morning? Me, who is a late riser? Sigh!

Reached the venue at S.P.Jain Institute of Management and Research, Andheri on the dot of 8:30 and after quick registration and a cup of coffee I was ushered into the auditorium for the first session in the morning. There were about one hundred attendees from different parts of India all with the common goal of getting a better insight on management skills in the NGO sector.

After the inauguration lighting of the lamp, Prof. Rukaiya Joshi spoke about how we can work more professionally as an NGO and how to implement what we learn into our daily day to day work activities. That no sector can work in isolation and learning from each other becomes the important factor for progress.

Dr Sesha Iyer spoke about the value based growth of an organization. There should be proper attitude for serving and one must believe in a notion to be able to send in their idea across to other people that they should be able to take a proper decision and that influence plays an important role. While there is need on one side to do the social work there are people willing to help from the other end, all we need to manage is the networking and communication.

During the morning session Prof. Rukaiya discussed the topic on ‘Accelerating socio-economic rural development’.

There are three factors that characterize the Indian Rural development scene:

• Firstly, we need to recognize and address the vast diversity that exists in India due to socio-cultural and religious forces.
• Secondly, the relationship between manager and the beneficiary is both rich and complex and this can be done best on friendly terms.
• Third, there are four diverse types of organizations who are involved in rural development efforts in this country, such as voluntary agencies, co-operatives, corporate sectors and the government and each of these have their own strengths and weaknesses. 

In accelerating the rate of development we have to understand as to how we can contribute more than what we are already doing. During the research it has been observed that 60% of them have grown and 10% have become mega projects while some of them have ceased to exist.

Rural development is a process of facilitating empowerment of the people, leading them to self reliant and self sustaining activities, which is initiated through the interventions of external agencies.

Mainly there are four categories of action plans.

• 1. Networking among agencies: It is important to have partnership with other agencies of similar goals to accelerate the growth. Make a list of other NGO’s in your area and network with them, know their struggles and challenges so that you don’t waste time by trial and error method, when you can easily learn from each other and facilitate growth. Appoint the person who excels in that field to take up that particular task.
• 2. Using administrative tools: It is important to make reports of the project undertaken to know your strength and shortcomings which can help in future projects. It is important to find time to make proper formats and the reports so that task can be made more meaningful. The untapped sources of specialist and committed people are able to contribute to the rural development more effectively
• 3. Energizing the agencies: Motivation is required to create conducive atmosphere for development, five ‘M’ of management add to the organization value, (Machine, men, money, market and material). If the funds are managed well then 20% of the useless expenses can be eliminated. Translating good intentions and high investment into rapid rural progress requires concern at the highest levels with outputs, and also with managerial intervention necessary to achieve them. Effective implementation is important for success. Just making a formula is not enough, implementation is also important. There should be margin for change. Thinking in same way hampers the creativity, sometimes it is necessary to adopt completely different situation, change the system and implement it.
• 4. Involving the Beneficiaries: Efficiency (doing the right things), effectiveness (doing the right way) and accountability) taking the responsibility) is the root core of management. Social development is linked to economic development. If there is no growth that means something is wrong. If it does not work then you should know when to exit and that can happen only when you empower the beneficiaries. If the beneficiaries are always protected then they will never grow. Collective thinking has to happen. As long as you are clear in your ideas, you should be ready to take the blame. There should be no excuses for failure.

An Inspirational story of Hydrocephalic Survivor

"I changed from a guy who hoped he was dead one day to a guy who wanted to live every moment of his life as if he had never lived before. By the time I left college, I had a set of friends who were as close to me as family and I was a person, who completely believed in himself. One thing I learnt from all this, it was never the way others looked at me that changed, it was the way I looked at the world that made all the difference"

Says Tavish Chadha. He suffered from Hydrocephalic problem at the age of two months and has been operated seven times for his hydrocephalic problem, But that is all past, now he leads a very normal life in the corporate world and is a active blogger too.

He is happy to share his success story with the parents who have children suffering from the same disease.

1985 to 1989 – Early childhood

3rd July 1985, a new member was added into the Chadha family. We were a joint family back then. I wasn’t the first grandson born in the family, but as far I know, I was the most pampered. 2 months into this world and I developed a problem called Hydrocephalous. As soon as it was confirmed that something was wrong, we quickly drove down from Chandigarh to Delhi. Delhi at that time was simmering thanks to the anti-Sikh riots. Dad tells me that he stood at the gates of AIIMS holding me in his arms and the guard wouldn’t allow him inside accusing him of being a terrorist. After he pleaded and begged him, we were allowed in, but only till the kitchen and that’s where my check up was done. Anyways, the problem was soon diagnosed and I was rushed to the operation theatre. After the operation, the doctor came and told my dad that there are high chances that I may be a mentally retard and the best he could hope for is that I have an IQ of 80. After this dad went and visited ever single gurudwara in Punjab and asked god for just one thing, “Just make sure my son gets to study.” Contrary to all expectations, I turned out to be quite a bright little kid. At the age of three, I could actually talk to people about every tennis player of those times. At an age when kids couldn’t pronounce Czechoslovakia, I could tell people what the capital of that country was. My dad tells me this story every time I curse life or god. He just says, “If it wasn’t for that god, you wouldn’t have been what you are today. Out of all the people on this planet, you can’t afford be a non-believer. ” If it wasn’t for this incident, I would have never believed in the concept of god at all. I still don’t believe in the concept of multiple religions, but I do believe that there is a divine power up there who is running the whole show on this planet. Anyways, I had a couple of surgeries in Delhi in the next couple of years and then five more in Hyderabad, where we shifted after dad got a job in Asian Paints.

1989 to 1996 – growing up years phase 1

We moved to Hyderabad in early 1989. After staying in a rented house for two months, we moved into a flat given to us by the company. The society in which we moved into, had people from all over the country. I was a very touchy kid who was always over protected by my parents. To top it all, I was a complete tube light (although, some would say I still am). This proved to be a very dangerous combination. This made me very vulnerable and the other kids would find it very easy to manipulate me. I always found it difficult to learn when others taught me something, but would end up learning that very same thing all by myself in no time. My dad toiled unsuccessfully for over a month to teach me how to ride a bicycle and how to skate, but finally lost all hope one day. From the middle of nowhere, I started riding the bicycle and started skating all by myself. The problem wasn’t that I had a problem with his teaching; it was just that I couldn’t follow a standard step by step procedure of learning something. Even today, I find it difficult to follow a standard procedure in doing something. If I find a better way of doing something, I’ll go for it regardless of what people have to say. I am not sure if that’s a good thing or not, but it’s just the way I am.

1996-2003 – growing up years phase 2

I shifted from an all boys school to a co-education school. I had hardly any interaction with girls before this, except for my childhood friend, who I always treated like another guy. Now, here I was, all of a sudden found myself surrounded by aliens. My sister had a heart problem and my parents had to start concentrating on her and with the result I had to take complete control of my life. This proved a little too much for me and everything started falling apart. I soon started to lag behind in my academics, fellow students and teachers started to look down on me and as a result I had no friends. Things went from bad to worse over the next two years. My teachers used to humiliate me and beat me up every single day. I soon went into a state of depression and developed an inferiority complex. I lost all the confidence that I had and began to hope everyday that, that day was my last. Then one day, somewhere in the year 2000, when things had become way too much for me to handle, I went back home and burst out crying in front of my mother and I told her everything that was actually going on with me. Since then mom and dad helped me get out of my mess slowly and steadily. By the time I had passed my 10 th grade, the kid who had stopped seeing more than 50% on his mark-sheet, passed out in first division and by the time I passed out of my twelfth I could actually boast of a percentage in the eighties. It took a few more years to come out of my inferiority complex and depression. Those years weren’t easy, but today, as I look back, those days are an asset. Whenever am low or the chips are down, I just close my eyes for a few minutes and recollect those memories and say to myself, “if I could get through those days, I can get through anything.” People who have known about this feel sorry for me, but I kind of feel proud that all that happened. You may find it strange, but I kind of feel gifted.

2004-2007 – College life

My dad always wanted me to be an engineer but left the decision on me. However, one of my dad’s friends advised him not to make me take up engineering because he felt I wouldn’t be able to cope with it. Instead, he felt I should be doing a course like arts. My dad just replied saying “it’s completely up to him. I am not going to force him into anything.” But that very day I sub-consciously decided that I am going to be an engineer and show this guy that I CAN. So here I was, in March 2004, admitted into one of the best Engineering Collge in Hyderabad. My inferiority complex hadn’t completely gone away from me. The next three years passed by pretty fine. Not too many friends but I was leading a decent life. The turning point for me came in my final year, when I got through Accenture. It was no great interview that required me to know rocket science, but, it was the first time I had achieved something all by myself. Things changed all of a sudden, I was full of confidence and could now start looking at people eye to eye. Even my class mates were shocked on seeing the new me. I was a changed person. I changed from a guy who couldn’t speak to anybody to a guy who proposed a girl in front of a hundred people knowing she wouldn’t accept it because she like someone else. I changed from a guy who hoped he was dead one day to a guy who wanted to live every moment of his life as if he had never lived before. By the time I left college, I had a set of friends who were as close to me as family and I was a person, who completely believed in himself. One thing I learnt from all this, it was never the way others looked at me that changed, it was the way I looked at the world that made all the difference.

2007 to present – Life in the corporate world.

Although I had done my electrical engineering, I was always fond of software. I could sit for hours and code something. Joining Accenture was a dream come true. I entered this organization with a picture in my head, where all I would be doing is coding software, something I loved doing. However, I soon realized corporate world had many more dynamics attached to it. The past three years have gone from excitement of finally getting to earn your own money to frustration on seeing no future in what I was doing to realization that however pathetic things are, in the end of the day you have to face them. The question I had to ask myself again was, “are things that bad or is it the way I am looking at them?” The answer didn’t really surprise me. The minute I changed my perception about things, things at work changed automatically.

So that’s how my life has been for the past twenty five years. I won’t say it’s been a great life, neither will I say it’s been a bad life. It’s just been a journey of crests and troughs and with each crest and each trough, I have grown as a person.