The Mind Tree

A Miraculous Child Breaks the Silence of Autism

By Tito Rajarshi Mukhopadhyay

Skyhorse Publishing

Copyright © 2011 National Autistic Society
All rights reserved.
ISBN: 978-1-61145-002-6

Contents

Foreword by Lorna Wing,
The Voice of Silence,
Beyond the Silence,
All Through the Rainbow Path,
The Mind Tree,
Poems from Tito’s Story,

CHAPTER 1

The Voice of Silence

The Window of my World

Men and women are puzzled by everything I do. My parents and those who love me, are embarrassed and worried. Doctors use different terminologies to describe me. I just wonder.

The thoughts are bigger than my expressions to get a shape. Every move that I make interprets my helpless way to show how trapped I feel in the continuous flow of happenings. The happenings occur in a way that show the continuity of cause and effect. The effect of a cause becomes the cause of another effect. And I wonder….

That is not just wonder alone but also a reason for my worry. I think about the little boy who had a way of expressing himself, not through speech but through a frustrated temper tantrum. The language was known but it did not relate to anything.

Shadows

The hand had made a strange relationship with its shadow, and he fluttered it and spent his hours, contented with the lone company of his shadow. And his worries stopped. He shut away the world and felt secure in the presence of the shadow. If only the world could be a game with the shadow! But the reality was that he was drawing himself away and away into the world of his shadow.

Nights were terrible. He searched everywhere for his shadow. He flapped to call it, there was nothing but darkness. He cried for it betrayed by the friend.

The next friend was the mother’s lap, which had the warmth and readiness. It reached such a point that he was in a state of panic if somebody else tried to pick him up. He refused every place and also social gatherings. Even new roads, the garden and people were frightening. Mother forced him to socialise, by taking him to people’s homes, and the situation got worse. The lap of mother should not be let off. The boy now refused to walk.

The effect of a small cause — but I realise a bad result of a good effort.

“My son spoke when he was five,” somebody convinced his parents. “My neighbour’s child spoke when he was three and half,” said another voice. I specify `voice’ because he recognised voices rather than people. The relationship between voices and people developed later. That is an interesting story.

His mother used to sing and he appreciated the songs — words in tune. The songs were memorised and kept on repeating over and over again. His tantrums stopped when he heard the songs. His mother was too relieved to discover it. So she did not foresee that in public places her song therapy would not work. By now he got used to her `voice that sang’. He threw up a tantrum when she spoke to him or to anybody else.

One day, he found that when her lips moved the song was heard. “The voices related to people and lips.”

That looked easy. For a few days after that, he was in front of a mirror finding out a way to move his lips — pleading them to move in a silent way. But it did not flutter or move like mother’s. All his image did was stare back. That was a terrible jolt. Another frustration and a great fear grew. He refused everything that belonged to `the world’. He waited for some remarkable thing to happen and started to meditate for an answer.

Mother tried her best. She carried him on her back and danced across the rooms making funny faces and saying easy words like — “Ma, Baba” hoping he would say them after her. His father carried him and walked on the roads, as he refused to walk. “Can’t recall why he refused to walk” — probably it was out of fear of the white shoes that mother got for him which squeaked. Her fault was none, as she wanted his walk to look cute and sound funny. But he was afraid, as the sound followed him every time he walked. That was not all.

Father had to take him through the same route. It was already frightening to go to new places and see new roads. He felt miserable when father stopped and stood while carrying him to talk to somebody.

I think about those dark days when mere sound of human voices annoyed him. Temper tantrums resulted, and lasted until he got exhausted.

“Why are you making the child weep?” a voice was directed to his father, also exhausted and nervous by the sudden outburst of the son, but he was too humble to answer back. He tried to hurry homewards. Several days later, mother discovered that he would have a fear if they tried a new route.

One day he was disturbed to find a different map of clouds overhead. It was a great disappointment, as he had memorised the previous day’s sky.

A world full of improbabilities, racing towards uncertainty.

Mother joined her B.Ed. course, thinking about her future career as a teacher. She was about to complete two (years). The hope of staying with Dadu, his grandfather, and Dia, his grandmother, excited him. It would have been a very happy stay if he could have a fearless stay. Not that they did not love him but somehow he knew that mother was unwelcome.

Dadu was a person who always raised his voice when he spoke to mother. But he was very pleasant with him. Dia was moderate with her although she complained how tired she felt with her kitchen and grandson.

It was a brief stay of ten months and the message was received — “He had a bad mother”

She was bad because she studied. She was bad because Dia got tired. She was bad as she did her lesson plans when she was supposed to have played with him. She was bad, as the relatives thought that married women who were mothers should not study, neglecting their children. In a country where death is worshipped, where sacrifice is worshipped, where ambition is considered to be the key to greed and vice, she was bad.

He tried to side his mother mentally who was determined to finish her course and tried her way through. She got her appendix operated and then his endless journey to the various doctors began!

The first doctor he went to was an ENT [ear, nose and throat] specialist, who rang a bell to see how he reacted. He tapped his table, observed and prescribed a tonic or medicine called Encephabol, which the boy took for two months.

By then he had learnt a way to escape his uneasiness of lack of communication. It was masturbating on the edge of the bed or a sofa.

“Are you trying to swim?” His mother tried to reach out to her son and encouraged him by saying `very good’, at his every move. Hoping that he too would repeat after her and say at least something.

She hardly realised what her two and a half year old son was up to. It took her about a couple of weeks to find out and get worried. I can still remember her efforts to divert his attention by giving him books to see.

He waited for the next opportunity and started it again. The next time was when she was in college, and Dia was in the kitchen. The habit that he found irresistible to leave and got punished later for it.

But yes, he has developed a feeling of guilt and tries to think of something else when he is tempted.

* * *

I think about the times when he would change the environment around him, with the help of his imagination. He could go to places that did not exist, and they were like beautiful dreams.

One such was that of a staircase, which went high, higher and still higher reaching somewhere — anywhere. But a great disappointment occurred if it took him to nowhere and he had to start elevating again.

There was a funny hope that the staircase would lead him to God. The concept developed probably due to the fact that his Dia was a very pious lady and prayed a lot.

The obsession with staircases continued to exist even in the real world. One day in a doctor’s chamber in Calcutta he spotted a staircase. He pushed and pulled his parents towards it. He refused anything else and thus got noticed by the people around. The parents had a tough time answering the inquisitive questions. Several attempts were made to calm him down without much effect.

A team of three doctors observed him and concluded that he had cerebral palsy.

There was another daydream that kept him occupied. It was that of a middle-aged gentleman sitting near him. It was very annoying to find that he sat everywhere and anywhere the boy turned. It took him years to find out that nobody else except him saw this man.

There were more things that puzzled him. There was a cloud on the chair and he found it difficult to sit on the chair. Sometimes the same person about whom mentioned before, sat on the chair.

I thought about his illusions and came to a satisfactory explanation. Probably in some magazine, or somewhere on the TV, he saw a similar person and thus imagined him anywhere.

It is important to mention that a time came when he lost control over these images that formed around him. He got lost in a situation that was unreal or super real. The chairs and tables were still there, but a book or a magazine or some eatables were seen in places where they were kept previously.

“I can see the past,” thought the boy. He began to recall every sight, sound and smell — the happenings that had occurred around him and was glad to find out that he could replay the acts over and over again. In fact he could actually `feel’ the previous incidents around him.

“I can time travel,” concluded the boy.

* * *

Nothing in the world is stable. It is very painful to see that what we love most, and consider as our own sometime or the other is to be given up, and is taken over by time. Then we sigh and tell ourselves — “Ah, that was once mine and I still miss it”. I wonder whether it misses me too!

The boy, two and half years old was shocked to hear that his father had to move to a new house. He tried to show in his own way, how disappointed he was. It was painful.

Mother tried to practice her way, by taking him there, at least once a day, so that he could get used to the place and feel better and better about the house. But the boy cried louder and louder. The sorrow turned to anger. The parents were given every possible advice.

Some suggested that when children cried, a glass of water would help. Others suggested to feed him properly. A homeopathic medicine was also suggested that cured melancholic tendencies. Others blamed the `cruelty’ of the mother.

It was a terrible feeling to be in the new house. The toys looked so different and frightening that the boy stopped playing with them. He could not find any association between things that changed places.

It is something which I want to discuss in detail. It was a very fragmented world for the boy.

He could recognise the places first and then relate the objects to these places. A picture of a dog on the book could be identified as a dog, but a street dog could not be identified. It took years, and a lot of practice by him and the patience of his mother who kept on asking him questions, comparing pictures of a dog or a cow with the living beasts on the roads and the zoo, to overcome this. A book with the pictures of animals was their companion till he understood it.

The alphabet of different books too looked different. The things of a place looked different, the people also differed in real life from their photographs.

At times his friends have complained that he does not respond to them in public places or in markets. It is a thing of great embarrassment for them and the boy feels ashamed for it. Perhaps it would help to carry photographs of friends in the similar way as was done before.

Time was running out and the parents took the boy to a speech therapist. He was a bit impatient to handle a two years eleven months old boy and declared after ten minutes observation that he was sorry to say that the boy was mentally retarded.

I still go back to that moment and find that it was like a lightning striking down upon the family.

The mother staggered back to the hotel room, hugged her son and wept bitterly. The boy was sad too but could not show any feeling of pain. This is a major problem that the boy still faces. It needs to be mentioned that the boy had laughed at times when situations were sad. He wondered why he was not crying in a situation like that.

But had he spoken, he would have given a very touching speech about it. There was his mother weeping for a very uncertain future and there was the boy flapping with contentment. That was the last time he saw his mother so helpless, so afraid, so defeated.

The next thing that the boy found was that his mother was turning very religious. She started to believe in everything that was told to her. She began to keep fast on Fridays. She also asked the people and the neighbours what to do.

Somebody suggested that she take the boy to a temple, which had a healing aura around it. Other advised her to become a member of some religious organisation. The boy too began to think that one day there would be a miracle that would cure him.

A gentleman suggested that mother should separate rice from the grains before dawn. She should wrap them in a piece of white cloth, leave it on the road, taking care that nobody should see her. It took her the whole night to separate the required number of grains. That was a monsoon month and under a pouring sky, the white cloth was placed on the road — so that the boy spoke.

“Let us put him in a school,” decided the parents. “He would socialise with other children and begin to talk.”

So the boy went to the school, which was a congested drawing room of somebody’s house. There were about twenty-five to thirty children sitting on a mat placed on the floor. The room was dark and the walls were painted dark green. The boy found it very funny to be there for the first ten days. Then he began to get bored of the place. He tried to show how much he disliked going there. But his mother had reasons for her determination. The boy was also no less stubborn. Every day he started to shout louder and louder on his way to school and at school.

“It will stop after some days” thought everybody. But the intensity of the three year one month old boys’ voice was increasing every day, tiring out the patience of everyone.

“Sorry, he is not yet ready for a school,” the mother was told by the teacher. Mother was not ready to give up. She asked whether she could bring him after a month. But the lady had enough of the boy. The boy too had enough of the school.

The boy was as stubborn as his mother was desperate and worried. She called the children of all age groups to play in her house, hoping that the boy would participate and try to interact with them. She distributed sweets liberally to make their house `attractive’ for the children.

Every evening they came home and played, while the boy tried to hide. What a noisy group! He was already disturbed by voices. He tried to flap away the sound with greater frequency.

I now regret the great opportunity that he lost! But there was a basic difficulty which the boy was facing. I have mentioned earlier that he had absolutely no control over his `visions’ and this happened whenever he was disturbed and found a situation difficult to cope with.

Had somebody asked him what a game was and had he the gift of speech, he would have defined it as `a collective effort to follow some rules, and relax the mind.’ It was a very difficult task to imitate. That was a major drawback. It made him feel uneasy and probably he sheltered in the unreal world where the staircases took him higher and higher away from the voices, into silence.

The lonely self in the crowd. A contentment, aiming for liberation — a complete state of tranquility.

For my readers who are wondering why I called the boy `stubborn’ in the beginning and later became defensive about it, saying that he had a difficulty to imitate others.

He was obstinate because, when he was unable to play, it was believed to be his unwillingness to interact with children. So a popular belief developed that he was stubborn.

The gossiping hours of the ladies gave birth to special theories as to why the boy did not behave like other children. They fingered at mother and her ten months long B.Ed. course. Mother could never overcome her guilt and never appeared for her final exams. She still feels responsible for the boy’s distortion.

There are always some people who like to be helpful. The boy’s mother was supported by a friend of hers, Mrs Ray. “Bring him to my house after ten. You can finish off your work then.”

In the evenings they both took the boy for a walk. Wherever the boy feared to go, they took him through those roads, ignoring his tantrums. Now mother was not alone to handle the child. She slowly gained back her confidence — with that her courage to tackle the questions and the pointed fingers.

A friend she has indeed! A big hearted Mrs Ray.

It was thought that a tricycle would be of much help to the boy. His sense of colour was great. So when it arrived, to show his appreciation for the tricycle, the boy arranged all his red toys in a line near it. It was red. (There was tough time ahead!)

“Now he can cycle on the road and forget the rules,” the parents agreed. “Come on, son, sit and ride.”

The boy sat, while the parents, took turns to push the cycle from behind. They giggled and argued about how long they should each push. One would have thought that it was they who got the tricycle! The boy sat passively without even trying to hold the handle, so that the person who was pushing from behind had to hold the handle too, in order to keep the cycle on the track. They soon got tired and the boy waited to be pushed.

(Continues…)Excerpted from The Mind Tree by Tito Rajarshi Mukhopadhyay. Copyright © 2011 National Autistic Society. Excerpted by permission of Skyhorse Publishing.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.