How Can I Talk If My Lips Don’t Move?: Inside My Autistic Mind
by Tito Rajarshi Mukhopadhyay, eBook 2011; an Extended Review with < My Thoughts > by Sara Luker
Excerpts from the book – (4% indicates location in the Kindle version of the book, instead of page numbers).
4% Excerpt from Forward by Margaret L Bauman, M.D., Ph.D., Director, Autism Research Foundation & Autism Society Board of Directors –
5% What makes this personal story so remarkable is that it comes from a young man whose verbal expressive language is profoundly impaired but who communicates almost exclusively by independently writing or typing his thoughts and ideas on a computer.
Autism is a behaviorally defined disorder characterized by impaired social interaction, delayed and disordered language, and isolated areas of interest.
Basic scientific research in autism is moving forward ever more rapidly, parallel to and in association with active clinical research, but much remains to be learned.
Attending to the observations of those affected with the disorder can help us frame realistic and meaningful questions worthy of investigation.
Each one of Tito’s observations in this book affords us an opportunity to consider how this young man is taking in and handling information in a variety of modalities.
< My Thoughts > “…taking in and handling information in a variety of modalities”
This is what children with autism do. How they process what is going on in the environment depends on their sensitivities and abilities…and that can be ever changing. Just when you think you may have the answer…they change the question.
6% There is little doubt that Tito is who he is in large part because of the persistence and dedication of his mother and her ever-present and creative teaching and learning.
< My Thoughts > “There is little doubt…”
Tito and his mother had a connection which allowed for this unrelenting persistence, dedication and creative teaching.
Whatever the future holds for Tito, he has already made a significant contribution to the field of autism…
One of my first thoughts when presenting this material was for parents and educators to hear Tito’s story. Hopefully through his words everyone will gain a greater understanding about how autism played a role in his life and that of his mother.
End of excerpt from Dr. Bauman’s Forward (Including < My Thoughts >
==========
Excerpts from Tito’s book with < My Thoughts > by Sara Luker
6% There are times in everyone’s life when there is a need to tell a story. It can be any story.
7% I grew my stories from this and that, now and then, here or there, to compose this book.
Right now, I am thinking about a mirror. It was a mirror in one of the rooms upstairs, in the house where I spend my second and third years of life. The mirror in front of a window, and it reflected the rocks of those sun-baked hills outside the window.
< My Thoughts > “Right now, I am thinking about a mirror.”
Sonny spends a lot of time with mirrors and glass reflections. He coos to them and seems to look beyond his own reflection. Sometimes I think he is looking at the reflection of the ceiling fans. We put a full length mirror on his closet door and a small framed mirror sitting on the floor where he can move it around if he wants to.
7% I would stand in front of that mirror, not to admire the landscape in its reflection. I would not stand in front of it to see how well my hair was groomed either. I would stand in front of it because I believed that the mirror wanted to tell me a story.
I believed that the mirror wanted to tell me a story because I wanted to tell it a story. I would tell my story to the mirror, and the mirror would tell me back the story. I would believe that the mirror heard my thoughts.
< My Thoughts > “…the mirror heard my thoughts.”
Sonny, and other children with autism that I have known, are very attracted to mirrors. This is the first time that I have been aware of it being regarded as something to interact with. I’m not sure what Sonny gets from the mirror, but he seems to laugh with it…so maybe instead of merely finding reflections he is finding stories as well.
7% Only after I heard the silent voices, could I tell my story to the mirror. Stories with sounds of blue, white, red, or brown. Or, stories with the colors of air.
< My Thoughts > “Stories with sounds of” colors…
Some children with autism talk about the importance of colors. “What Color is Monday?” a story by Carrie Cariello, which I would like to write an excerpt about speaks to this. Also, children have said that the people around them have colors which change according to moods or attitudes. If one were thinking metaphysically… one might believe that the child sees auras…or, the energy field which we are all said to have but only a few can see.
7% One day, while I stood in front of it, I realized that it was easy to go through it and come out through it. And I realized that I could go in or come out only when the world behind me became transparent. Absolutely transparent. And where would all the colors of the world behind me go?
Stories waited for me behind the mirror. So I was needed on its other side. There was no great trouble to go through the mirror to the other side.
7% Real voices. I could be waiting behind a shadow listening to a story in red and green, when I would be interrupted by a real voice made of sound, thus dissolving the story of red and green. And then, to my utter horror, I would find myself surrounded by real voices. Voices made of sounds, on the real side of the mirror.
< My Thoughts > “…a shadow listening to a story in red and green.”
In addition to the colors and the mirror, Tito will soon talk about how important his shadow was to him.
7% “If you try hard enough, you can talk,” Mother’s voice would tell me. Mother’s voice would tell me that when no one was around…
…because she did not want those women to smile at her for trying to explain things to a boy who had not even learned how to talk yet.
Their smiles were the color of jaundice yellow, and that yellow was so dense, every color could be choked by its strength. I believed that Mother saw what I saw.
And I believed she was careful because she did not want to be choked by jaundice yellow either.
< My Thoughts > “I believed that Mother saw what I saw.”
Children with autism believe that others can read their thoughts…that what is in their mind is in our mind…that what is happening to them is also happening to others. Or, possibly caused by others. When Sonny is having a “startle” seizure and I am nearby…he looks at me as if to say…why did you do that to me? Scary…
9% Was I scared or confused? I am not certain, as I did not know what the rules of the world were and what other people experienced.
The maid had to move me away from the mirror because I did not move when she asked me, “Tito Baba, please move a little, as I have to mop the floor.”
The sound of her voice made me come back from behind the mirror…
“Why is he screaming?” voices would ask Mother. “She should know. After all, she is his mother.”
“There, there, let me rub your feet with cold water. Those bad, bad fire ants!” Mother’s voice would continue to distract me while I heard my voice scream.
I would scream, and I would wonder. I would wonder about the mirror upstairs. I was sure that it was forming a story in red and green once again. I would wonder whether the mirror upstairs was aware of my screaming.
10% My voice would scream, and I would realize Mother’s voice was singing something familiar in my ear. I would slowly concentrate on the words of her song and try to mentally sing along because I had most of them memorized. To my relief, I would realize that my voice had stopped screaming. I would continue to think about the mirror.
< My Thoughts > “I would slowly concentrate on the words of her song…”
We have found that Sonny responds to soft jazz or classical music when he is upset. Listening to music takes a while, but eventually calms him down. Sometimes he even rushes into his room and pushes the button on his player… to get the music started when he gets the feeling that he is going to have a seizure episode. Strange!
10% I would rush upstairs only to realize that Mother was following me with her voice, her song. There was no way I could tell her to stop, no way I could tell her that the mirror would not show me any stories with the distraction from her voice.
< My Thoughts > “…the mirror would not show me any stories with the distraction from her voice.”
Sometimes when I enter Sonny’s room to engage with him …the interruption startles him so much that he jumps up and pushes me out of the room. His annoyance is palatable.
10% Mother followed me around with her voice, explaining in every detail of my actions and defining my surroundings.
Mother made a point to tell me that I was climbing because I was moving away from the ground.
She never failed to explain that it was my legs that helped me to climb…
Before I was even five years old, I could define the words “gravity, force, and acceleration” because Mother defined them to me with dedicated constancy.
11% Mother gave me a little handheld mirror through which I could see anything I wanted to.
She took it with her whenever she followed me out to the garden with her voice. She tried to see what I was looking at and reflect that in the mirror.
12% Mother knew nothing about my selective vision when I was three. I could look at certain things but not at others. Things that calmed my senses, were easier to see, while things that stressed my vision were not easy to look at.
I could not feel comfortable seeing the sky or corners or anything through the little handheld mirror.
< My Thoughts > “I could not feel comfortable seeing the sky…”
If you’ve ever viewed the night sky from a clear perspective you know how overwhelming and magical it can seem…even a little bit frightening.
12% I would walk back to the house giving back the little handheld mirror to her because I did not want it.
“If you love looking at the big mirror, why don’t you love looking at this mirror?” Mother’s voice wanted to know.
I never liked to be away from the upstairs mirror for long. As if my thoughts would only flow if I was near it.
Some days I thought of nothing else than the mirror upstairs.
< My Thoughts > “…why don’t you love looking at this mirror?”
The handheld mirror may have been too distracting, or not stationary enough to become comforting… or, disturbed the ritualistic sense of the mirror’s purpose.
Think of times when something that happened… held in your thoughts that very thing keeps returning, over and over…I call it looping. Then think about a child who cannot bring him/her self out of that loop. Not by hearing conversation, not by listening to music, nor by reading a book. You are stuck in that same thought, hearing it in your head, over and over, again and again.
13% One day I happened to realize that when people moved their lips, they made a talking sound known as ‘voice’.
For the next few days I would go upstairs, and stand in front of the mirror, in the hope of seeing my lips move. I had every bit of patience with the mirror, and the mirror had every bit of patience with me.
I could see the green curtains move with the breeze… I could see the leaves of the Sal-trees move, and I could see the ceiling fan move.
Even my hands moved when I flapped them. Only my lips would not move.
14% My thoughtful mind would wonder about the sound of my talking voice, which I could only hear when I laughed or screamed.
I promised the mirror that I would remember not to distract it with all my talking, especially when it showed me stories of the wind and the ceiling fan in the color of air…
I promised the mirror with complete sincerity. The mirror reflected back my promise with total earnestness.
All my mirror tales were gone…
As my life goes on and on…
Through my age, yet stories follow…
Into the world of my shadow.
< My Thoughts > “I promised the mirror that I would remember not to distract it.”
Here, I want to share this excerpt from a Journal article published in May 2014, by Lin Du & Douglas Greer about a study they did.
It would appear that the mirror provided immediate complete visual feedback relative to the children relative to the models of the behaviors. In addition, the actions were taught side-to-side rather than face-to-face. Because imitation requires a comparison of one’s own behavior with that of others, the imitator needs to see both herself and the model at the same time to determine if the response does or does not correspond with the model. However, for the non-mirror trained group, the child sat on a chair facing the model. This traditional method of imitation instruction can only provide half of the “learning picture” to the imitator. Without the presence of the mirror that builds up the connection between her own response and that of the model, the child can only kinesthetically feel, or guess at, the visual correspondence.
The reflective feature of mirrors enables the child to see not only the model but also himself/herself in the mirror, therefore, the “learning picture” is intact and, thus, “what the response feels like” (kinesthetically) is connected with “what the response looks like” (visually) (Mitchell 1992, 1993).
14% My shadow, I believed, was my greatest companion.
Every time I stood under the sun, out in the yard, along with the shadows of those tall Sal-trees, every time I walked inside the house and Mother switched on the lights, even though it was daytime, because I would scream if she did not…
…and every time I walked in the streets under the light of the streetlamps during summer evenings, I found my shadow.
15% Another day I continued to jump up and down on the verandah, only to give my shadow some exercise. I would not stop jumping up and down, even though Mother was trying to distract me, not realizing that my shadow needed some exercise.
Many times I waited for my shadow to begin some story.
But my shadow never told me any story.
I wondered why.
And I wondered why not.
I wondered why shadows don’t tell stories.
I came up with the answer – “How could a shadow tell a story without having a color of its own?”
I could see the night jasmines wet with morning dew, lit with fresh sunshine, trying to form a story in white with their jasmine-petal smell.
I would see the story spread in the air. Then I would put my hands above it, so that my hands cast a shadow on the flowers.
I would see that the moment I put my shadow above the flowers, the story would immediately stop forming.
…so I would move my hands away from them and the story would begin to form.
My boundary between imagining and experiencing something was a very delicate one. Perhaps it still is. So many times I thought that I needed to crosscheck with Mother…
…to see if an incident really happened.
17% “Does he flap his hands all the time?” the clinical psychologist in a Calcutta hospital asked Mother.
I chose to stand in the corner (of his office) between two glass doors, so that I could see as many reflections of my flapping hands as possible through the glass.
Although they were not as good as the mirror, I thought they would do for the time being…
They also reflected my flapping hands. I was impressed. “Every room in this world needs glass doors!”
< My Thoughts > “Every room in this world needs glass doors!”
My son acts as if he wants to become one with the reflection, or get on the other side of it. He really makes us crazy in the jewelry section of a department store. Those display cases have bright lights, mirrors and glass. Ohhhh…the ‘trifecta’ of stimuli. To say nothing of the reflection of light on the gold, silver, and diamonds in the jewelry itself.
18% I stood in the corner between two glass doors so that I could see many reflections of my flapping hands as possible through the glass.
I remember the voices of Mother and the clinical psychologist tempting me, asking me, prodding me to come to the table and start playing.
Mother brought me to the table once or twice, so that I could do something with those toys.
And each time I was brought near the table, I would go back to stand in front of the cupboards.
How could I tell them that the shadows and reflections made me feel secure?
I remember the clinical psychologist writing down or, rather, hearing her write down something in her chart…
One word: Autism! A fancy word.
I finally knew the reason why I would not talk. It was because I was autistic. I wished to tell the curtains and the leaves that they, too, were autistic.
19% When I grew older and learned to hold a pencil, Mother taught me how to trace the outlines of shadows.
I started seeing shadows in a new light. I could now trace the shapes within the boundaries of my tracing.
20% I would seek out new stories in those shapes on the floor.
Although shadows did not have any story to tell, I consoled my mind that at least their chalk-mark tracings did.
…I leave my shadow story behind.
43% Mirror, mirror, on the wall.
Gather stories big and small.
72% Learning to write was the most important skill that I acquired because it helped me to be a storyteller.
I had my words and I had my stories, which flowed between me and the mirror.
Some stories were absorbed behind the secrets of my shadow, as I watched the shadow through the transparency of my flapping hands.
73% Many people do not have the patience to see me form words by pointing on the letter chart. Sometimes I pointed to those letters too fast, and sometimes I pointed too slow.
I needed a better way of expression. I did not want to be stuck within the boundaries of a letter board.
In the beginning of my first day, I continuously dropped the pencil.
…every time I held the pencil, I had to focus all of my concentration on the action. My senses were strained by practicing holding the pencil, resulting in discomfort…
Mother had to pick up the pencil every time I dropped it…
Did I want to write? Of course I did.
So why did I drop the pencil again and again…when my senses are overstimulated, there is no stopping them.
74% “This is not leading us anywhere,” Mother announced…she brought a rubber band from somewhere. She tied the pencil to my fingers in such a way that I could not drop it, even if I shook my hands.
Now that the pencil was secure, I needed to use it. I had to draw lines all across the page.
When pages were full, I practiced on newspapers.
I could feel the pencil as I moved my hands, holding it. Finally, my fingers were no longer tactilely defensive against the pencil. I no longer needed the rubber band.
< My Thoughts > “…my fingers were no longer tactilely defensive.”
It is so amazing that in spite of the mind and body disconnect, Tito was able to overcome his desire to throw away the pencil and cling to the need to tell his stories.
74% I began to understand my movements while drawing the line. Mother made me trace dots on a page…
Sometimes I joined the dots to form zigzags, sometimes triangles, sometimes rectangles, and other times very difficult-to-define shapes.
Soon I found myself joining dots and tracing out alphabet letters. Mother obsessively drew her dotted alphabet letters, while I obsessively joined them.
75% Weeks passed. I continued to practice. I progressed as I practiced. I was now copying the letters of the alphabet. I did not need to join the dots anymore.
Mother would write words or letters at the top of the page, and I had to copy them.
76% Mother reintroduced the letter board to me once I had mastered copying.
“Spell out the word CAT for me on this board.”
I touched the letter C.
“Now copy C on you page.” Mother gave me the paper and pencil.
I copied C.
76% …I copied T after C and A. I looked at my first word and felt extremely confident in my hands.
More words followed in the same way, and many more words followed in the days after.
…I could write on my own, and Mother would not need to be my scribe anymore.
< My Thoughts > “…many more words followed in the days after.”
Isn’t it heartbreaking to think of all the years without true communication between mother and son? But his mother didn’t give up. And, valiant Tito held on to hope, while his interpretation of the world though the mirror, his shadows, his stories, and his poetry sustained him.
80% Writing became a natural discipline in my life. Slowly I got used to writing down the letters from memory instead of copying them letter by letter.
I was no longer a slave to the letter board.
I first tasted writing’s fruits when I turned eleven years old and was invited by the BBC and the National Autistic Society in the United Kingdom, halfway across the world…
< My Thoughts > “I was no longer a slave to the letter board.”
The ‘Letter board’: Tito was the catalyst. His mother Soma’s methods have changed not just Tito’s life but the lives of many non-verbal children and adults with autism. Her book is titled –
Developing Communication for Autism Using Rapid Prompting Method: Guide for Effective Language by Soma Mukhopadhyay; Paperback 2013
92% I find myself or someone else with autism reacting to a situation in an alternate way, which may be different from the socially expected norm.
It may be unique to me or to the other person with autism, depending on which component unit is more dominant in a given situation.
I have seen many people with autism write about themselves, claiming that they can understand every aspect of the dynamic environment in its every detail and blaming only their motor dysfunction for not being able to perform.
Maybe they do. I don’t.
I do not believe that only my motor dysfunction is to be blamed for my alternate actions, which others call behavior.
95% I find my mind leading me away to some mental experience, which can be very different from what my body is supposed to experience in my physical environment.
96% …I could actually envision myself as an angle, looking at the base and the hypotenuse.
My autism is the dynamic experience of my relationship to the world, with its many aspects of place, people, climate, and their own interactions.
97% It was education that helped me enrich my imagination with all those probable and improbable reasonings based on science and philosophy, so that I could write my imaginings down as stories or as poetry.
98% What is my reason for being? What is my contribution to society? With my physical and neurological limitations, I am unable to do certain kinds of work. But I can think.
And I can write. I can write down my stories on paper with my pencil. Perhaps all those stories, written and waiting to be written, will be my contribution to society.
99% As the table fan flutters my pages, I contemplate all my written words and those which have escaped these pages.
< My Thoughts > “…I contemplate all my written words…”
What I have included here is but a small portion of a wealth of information which Tito shares with the world. When you read his book you will find much more of his poetry and a great deal more of his insight into his world of autism. Clearly Tito’s brilliance is a gift to the world. What will your child’s story be?
End of excerpts from Tito’s book
============
References used in < My Thoughts > are:
Lin D. & Greer, R.D. (2014). Validation of Adult Generalized Imitation Topographies and the Emergence of Generalized Imitation in Young Children with Autism as a Function of Mirror Training. Published online: 8 May 2014 # Association of Behavior Analysis International 2014.
Soma Mukhopadhyay (2013). Developing Communication for Autism Using Rapid Prompting Method: Guide for Effective Language; Paperback
by Tito Rajarshi Mukhopadhyay, eBook 2011; an Extended Review with < My Thoughts > by Sara Luker
Excerpts from the book – (4% indicates location in the Kindle version of the book, instead of page numbers).
4% Excerpt from Forward by Margaret L Bauman, M.D., Ph.D., Director, Autism Research Foundation & Autism Society Board of Directors –
5% What makes this personal story so remarkable is that it comes from a young man whose verbal expressive language is profoundly impaired but who communicates almost exclusively by independently writing or typing his thoughts and ideas on a computer.
Autism is a behaviorally defined disorder characterized by impaired social interaction, delayed and disordered language, and isolated areas of interest.
Basic scientific research in autism is moving forward ever more rapidly, parallel to and in association with active clinical research, but much remains to be learned.
Attending to the observations of those affected with the disorder can help us frame realistic and meaningful questions worthy of investigation.
Each one of Tito’s observations in this book affords us an opportunity to consider how this young man is taking in and handling information in a variety of modalities.
< My Thoughts > “…taking in and handling information in a variety of modalities”
This is what children with autism do. How they process what is going on in the environment depends on their sensitivities and abilities…and that can be ever changing. Just when you think you may have the answer…they change the question.
6% There is little doubt that Tito is who he is in large part because of the persistence and dedication of his mother and her ever-present and creative teaching and learning.
< My Thoughts > “There is little doubt…”
Tito and his mother had a connection which allowed for this unrelenting persistence, dedication and creative teaching.
Whatever the future holds for Tito, he has already made a significant contribution to the field of autism…
One of my first thoughts when presenting this material was for parents and educators to hear Tito’s story. Hopefully through his words everyone will gain a greater understanding about how autism played a role in his life and that of his mother.
End of excerpt from Dr. Bauman’s Forward (Including < My Thoughts >
==========
Excerpts from Tito’s book with < My Thoughts > by Sara Luker
6% There are times in everyone’s life when there is a need to tell a story. It can be any story.
7% I grew my stories from this and that, now and then, here or there, to compose this book.
Right now, I am thinking about a mirror. It was a mirror in one of the rooms upstairs, in the house where I spend my second and third years of life. The mirror in front of a window, and it reflected the rocks of those sun-baked hills outside the window.
< My Thoughts > “Right now, I am thinking about a mirror.”
Sonny spends a lot of time with mirrors and glass reflections. He coos to them and seems to look beyond his own reflection. Sometimes I think he is looking at the reflection of the ceiling fans. We put a full length mirror on his closet door and a small framed mirror sitting on the floor where he can move it around if he wants to.
7% I would stand in front of that mirror, not to admire the landscape in its reflection. I would not stand in front of it to see how well my hair was groomed either. I would stand in front of it because I believed that the mirror wanted to tell me a story.
I believed that the mirror wanted to tell me a story because I wanted to tell it a story. I would tell my story to the mirror, and the mirror would tell me back the story. I would believe that the mirror heard my thoughts.
< My Thoughts > “…the mirror heard my thoughts.”
Sonny, and other children with autism that I have known, are very attracted to mirrors. This is the first time that I have been aware of it being regarded as something to interact with. I’m not sure what Sonny gets from the mirror, but he seems to laugh with it…so maybe instead of merely finding reflections he is finding stories as well.
7% Only after I heard the silent voices, could I tell my story to the mirror. Stories with sounds of blue, white, red, or brown. Or, stories with the colors of air.
< My Thoughts > “Stories with sounds of” colors…
Some children with autism talk about the importance of colors. “What Color is Monday?” a story by Carrie Cariello, which I would like to write an excerpt about speaks to this. Also, children have said that the people around them have colors which change according to moods or attitudes. If one were thinking metaphysically… one might believe that the child sees auras…or, the energy field which we are all said to have but only a few can see.
7% One day, while I stood in front of it, I realized that it was easy to go through it and come out through it. And I realized that I could go in or come out only when the world behind me became transparent. Absolutely transparent. And where would all the colors of the world behind me go?
Stories waited for me behind the mirror. So I was needed on its other side. There was no great trouble to go through the mirror to the other side.
7% Real voices. I could be waiting behind a shadow listening to a story in red and green, when I would be interrupted by a real voice made of sound, thus dissolving the story of red and green. And then, to my utter horror, I would find myself surrounded by real voices. Voices made of sounds, on the real side of the mirror.
< My Thoughts > “…a shadow listening to a story in red and green.”
In addition to the colors and the mirror, Tito will soon talk about how important his shadow was to him.
7% “If you try hard enough, you can talk,” Mother’s voice would tell me. Mother’s voice would tell me that when no one was around…
…because she did not want those women to smile at her for trying to explain things to a boy who had not even learned how to talk yet.
Their smiles were the color of jaundice yellow, and that yellow was so dense, every color could be choked by its strength. I believed that Mother saw what I saw.
And I believed she was careful because she did not want to be choked by jaundice yellow either.
< My Thoughts > “I believed that Mother saw what I saw.”
Children with autism believe that others can read their thoughts…that what is in their mind is in our mind…that what is happening to them is also happening to others. Or, possibly caused by others. When Sonny is having a “startle” seizure and I am nearby…he looks at me as if to say…why did you do that to me? Scary…
9% Was I scared or confused? I am not certain, as I did not know what the rules of the world were and what other people experienced.
The maid had to move me away from the mirror because I did not move when she asked me, “Tito Baba, please move a little, as I have to mop the floor.”
The sound of her voice made me come back from behind the mirror…
“Why is he screaming?” voices would ask Mother. “She should know. After all, she is his mother.”
“There, there, let me rub your feet with cold water. Those bad, bad fire ants!” Mother’s voice would continue to distract me while I heard my voice scream.
I would scream, and I would wonder. I would wonder about the mirror upstairs. I was sure that it was forming a story in red and green once again. I would wonder whether the mirror upstairs was aware of my screaming.
10% My voice would scream, and I would realize Mother’s voice was singing something familiar in my ear. I would slowly concentrate on the words of her song and try to mentally sing along because I had most of them memorized. To my relief, I would realize that my voice had stopped screaming. I would continue to think about the mirror.
< My Thoughts > “I would slowly concentrate on the words of her song…”
We have found that Sonny responds to soft jazz or classical music when he is upset. Listening to music takes a while, but eventually calms him down. Sometimes he even rushes into his room and pushes the button on his player… to get the music started when he gets the feeling that he is going to have a seizure episode. Strange!
10% I would rush upstairs only to realize that Mother was following me with her voice, her song. There was no way I could tell her to stop, no way I could tell her that the mirror would not show me any stories with the distraction from her voice.
< My Thoughts > “…the mirror would not show me any stories with the distraction from her voice.”
Sometimes when I enter Sonny’s room to engage with him …the interruption startles him so much that he jumps up and pushes me out of the room. His annoyance is palatable.
10% Mother followed me around with her voice, explaining in every detail of my actions and defining my surroundings.
Mother made a point to tell me that I was climbing because I was moving away from the ground.
She never failed to explain that it was my legs that helped me to climb…
Before I was even five years old, I could define the words “gravity, force, and acceleration” because Mother defined them to me with dedicated constancy.
11% Mother gave me a little handheld mirror through which I could see anything I wanted to.
She took it with her whenever she followed me out to the garden with her voice. She tried to see what I was looking at and reflect that in the mirror.
12% Mother knew nothing about my selective vision when I was three. I could look at certain things but not at others. Things that calmed my senses, were easier to see, while things that stressed my vision were not easy to look at.
I could not feel comfortable seeing the sky or corners or anything through the little handheld mirror.
< My Thoughts > “I could not feel comfortable seeing the sky…”
If you’ve ever viewed the night sky from a clear perspective you know how overwhelming and magical it can seem…even a little bit frightening.
12% I would walk back to the house giving back the little handheld mirror to her because I did not want it.
“If you love looking at the big mirror, why don’t you love looking at this mirror?” Mother’s voice wanted to know.
I never liked to be away from the upstairs mirror for long. As if my thoughts would only flow if I was near it.
Some days I thought of nothing else than the mirror upstairs.
< My Thoughts > “…why don’t you love looking at this mirror?”
The handheld mirror may have been too distracting, or not stationary enough to become comforting… or, disturbed the ritualistic sense of the mirror’s purpose.
Think of times when something that happened… held in your thoughts that very thing keeps returning, over and over…I call it looping. Then think about a child who cannot bring him/her self out of that loop. Not by hearing conversation, not by listening to music, nor by reading a book. You are stuck in that same thought, hearing it in your head, over and over, again and again.
13% One day I happened to realize that when people moved their lips, they made a talking sound known as ‘voice’.
For the next few days I would go upstairs, and stand in front of the mirror, in the hope of seeing my lips move. I had every bit of patience with the mirror, and the mirror had every bit of patience with me.
I could see the green curtains move with the breeze… I could see the leaves of the Sal-trees move, and I could see the ceiling fan move.
Even my hands moved when I flapped them. Only my lips would not move.
14% My thoughtful mind would wonder about the sound of my talking voice, which I could only hear when I laughed or screamed.
I promised the mirror that I would remember not to distract it with all my talking, especially when it showed me stories of the wind and the ceiling fan in the color of air…
I promised the mirror with complete sincerity. The mirror reflected back my promise with total earnestness.
All my mirror tales were gone…
As my life goes on and on…
Through my age, yet stories follow…
Into the world of my shadow.
< My Thoughts > “I promised the mirror that I would remember not to distract it.”
Here, I want to share this excerpt from a Journal article published in May 2014, by Lin Du & Douglas Greer about a study they did.
It would appear that the mirror provided immediate complete visual feedback relative to the children relative to the models of the behaviors. In addition, the actions were taught side-to-side rather than face-to-face. Because imitation requires a comparison of one’s own behavior with that of others, the imitator needs to see both herself and the model at the same time to determine if the response does or does not correspond with the model. However, for the non-mirror trained group, the child sat on a chair facing the model. This traditional method of imitation instruction can only provide half of the “learning picture” to the imitator. Without the presence of the mirror that builds up the connection between her own response and that of the model, the child can only kinesthetically feel, or guess at, the visual correspondence.
The reflective feature of mirrors enables the child to see not only the model but also himself/herself in the mirror, therefore, the “learning picture” is intact and, thus, “what the response feels like” (kinesthetically) is connected with “what the response looks like” (visually) (Mitchell 1992, 1993).
14% My shadow, I believed, was my greatest companion.
Every time I stood under the sun, out in the yard, along with the shadows of those tall Sal-trees, every time I walked inside the house and Mother switched on the lights, even though it was daytime, because I would scream if she did not…
…and every time I walked in the streets under the light of the streetlamps during summer evenings, I found my shadow.
15% Another day I continued to jump up and down on the verandah, only to give my shadow some exercise. I would not stop jumping up and down, even though Mother was trying to distract me, not realizing that my shadow needed some exercise.
Many times I waited for my shadow to begin some story.
But my shadow never told me any story.
I wondered why.
And I wondered why not.
I wondered why shadows don’t tell stories.
I came up with the answer – “How could a shadow tell a story without having a color of its own?”
I could see the night jasmines wet with morning dew, lit with fresh sunshine, trying to form a story in white with their jasmine-petal smell.
I would see the story spread in the air. Then I would put my hands above it, so that my hands cast a shadow on the flowers.
I would see that the moment I put my shadow above the flowers, the story would immediately stop forming.
…so I would move my hands away from them and the story would begin to form.
My boundary between imagining and experiencing something was a very delicate one. Perhaps it still is. So many times I thought that I needed to crosscheck with Mother…
…to see if an incident really happened.
17% “Does he flap his hands all the time?” the clinical psychologist in a Calcutta hospital asked Mother.
I chose to stand in the corner (of his office) between two glass doors, so that I could see as many reflections of my flapping hands as possible through the glass.
Although they were not as good as the mirror, I thought they would do for the time being…
They also reflected my flapping hands. I was impressed. “Every room in this world needs glass doors!”
< My Thoughts > “Every room in this world needs glass doors!”
My son acts as if he wants to become one with the reflection, or get on the other side of it. He really makes us crazy in the jewelry section of a department store. Those display cases have bright lights, mirrors and glass. Ohhhh…the ‘trifecta’ of stimuli. To say nothing of the reflection of light on the gold, silver, and diamonds in the jewelry itself.
18% I stood in the corner between two glass doors so that I could see many reflections of my flapping hands as possible through the glass.
I remember the voices of Mother and the clinical psychologist tempting me, asking me, prodding me to come to the table and start playing.
Mother brought me to the table once or twice, so that I could do something with those toys.
And each time I was brought near the table, I would go back to stand in front of the cupboards.
How could I tell them that the shadows and reflections made me feel secure?
I remember the clinical psychologist writing down or, rather, hearing her write down something in her chart…
One word: Autism! A fancy word.
I finally knew the reason why I would not talk. It was because I was autistic. I wished to tell the curtains and the leaves that they, too, were autistic.
19% When I grew older and learned to hold a pencil, Mother taught me how to trace the outlines of shadows.
I started seeing shadows in a new light. I could now trace the shapes within the boundaries of my tracing.
20% I would seek out new stories in those shapes on the floor.
Although shadows did not have any story to tell, I consoled my mind that at least their chalk-mark tracings did.
…I leave my shadow story behind.
43% Mirror, mirror, on the wall.
Gather stories big and small.
72% Learning to write was the most important skill that I acquired because it helped me to be a storyteller.
I had my words and I had my stories, which flowed between me and the mirror.
Some stories were absorbed behind the secrets of my shadow, as I watched the shadow through the transparency of my flapping hands.
73% Many people do not have the patience to see me form words by pointing on the letter chart. Sometimes I pointed to those letters too fast, and sometimes I pointed too slow.
I needed a better way of expression. I did not want to be stuck within the boundaries of a letter board.
In the beginning of my first day, I continuously dropped the pencil.
…every time I held the pencil, I had to focus all of my concentration on the action. My senses were strained by practicing holding the pencil, resulting in discomfort…
Mother had to pick up the pencil every time I dropped it…
Did I want to write? Of course I did.
So why did I drop the pencil again and again…when my senses are overstimulated, there is no stopping them.
74% “This is not leading us anywhere,” Mother announced…she brought a rubber band from somewhere. She tied the pencil to my fingers in such a way that I could not drop it, even if I shook my hands.
Now that the pencil was secure, I needed to use it. I had to draw lines all across the page.
When pages were full, I practiced on newspapers.
I could feel the pencil as I moved my hands, holding it. Finally, my fingers were no longer tactilely defensive against the pencil. I no longer needed the rubber band.
< My Thoughts > “…my fingers were no longer tactilely defensive.”
It is so amazing that in spite of the mind and body disconnect, Tito was able to overcome his desire to throw away the pencil and cling to the need to tell his stories.
74% I began to understand my movements while drawing the line. Mother made me trace dots on a page…
Sometimes I joined the dots to form zigzags, sometimes triangles, sometimes rectangles, and other times very difficult-to-define shapes.
Soon I found myself joining dots and tracing out alphabet letters. Mother obsessively drew her dotted alphabet letters, while I obsessively joined them.
75% Weeks passed. I continued to practice. I progressed as I practiced. I was now copying the letters of the alphabet. I did not need to join the dots anymore.
Mother would write words or letters at the top of the page, and I had to copy them.
76% Mother reintroduced the letter board to me once I had mastered copying.
“Spell out the word CAT for me on this board.”
I touched the letter C.
“Now copy C on you page.” Mother gave me the paper and pencil.
I copied C.
76% …I copied T after C and A. I looked at my first word and felt extremely confident in my hands.
More words followed in the same way, and many more words followed in the days after.
…I could write on my own, and Mother would not need to be my scribe anymore.
< My Thoughts > “…many more words followed in the days after.”
Isn’t it heartbreaking to think of all the years without true communication between mother and son? But his mother didn’t give up. And, valiant Tito held on to hope, while his interpretation of the world though the mirror, his shadows, his stories, and his poetry sustained him.
80% Writing became a natural discipline in my life. Slowly I got used to writing down the letters from memory instead of copying them letter by letter.
I was no longer a slave to the letter board.
I first tasted writing’s fruits when I turned eleven years old and was invited by the BBC and the National Autistic Society in the United Kingdom, halfway across the world…
< My Thoughts > “I was no longer a slave to the letter board.”
The ‘Letter board’: Tito was the catalyst. His mother Soma’s methods have changed not just Tito’s life but the lives of many non-verbal children and adults with autism. Her book is titled –
Developing Communication for Autism Using Rapid Prompting Method: Guide for Effective Language by Soma Mukhopadhyay; Paperback 2013
92% I find myself or someone else with autism reacting to a situation in an alternate way, which may be different from the socially expected norm.
It may be unique to me or to the other person with autism, depending on which component unit is more dominant in a given situation.
I have seen many people with autism write about themselves, claiming that they can understand every aspect of the dynamic environment in its every detail and blaming only their motor dysfunction for not being able to perform.
Maybe they do. I don’t.
I do not believe that only my motor dysfunction is to be blamed for my alternate actions, which others call behavior.
95% I find my mind leading me away to some mental experience, which can be very different from what my body is supposed to experience in my physical environment.
96% …I could actually envision myself as an angle, looking at the base and the hypotenuse.
My autism is the dynamic experience of my relationship to the world, with its many aspects of place, people, climate, and their own interactions.
97% It was education that helped me enrich my imagination with all those probable and improbable reasonings based on science and philosophy, so that I could write my imaginings down as stories or as poetry.
98% What is my reason for being? What is my contribution to society? With my physical and neurological limitations, I am unable to do certain kinds of work. But I can think.
And I can write. I can write down my stories on paper with my pencil. Perhaps all those stories, written and waiting to be written, will be my contribution to society.
99% As the table fan flutters my pages, I contemplate all my written words and those which have escaped these pages.
< My Thoughts > “…I contemplate all my written words…”
What I have included here is but a small portion of a wealth of information which Tito shares with the world. When you read his book you will find much more of his poetry and a great deal more of his insight into his world of autism. Clearly Tito’s brilliance is a gift to the world. What will your child’s story be?
End of excerpts from Tito’s book
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References used in < My Thoughts > are:
Lin D. & Greer, R.D. (2014). Validation of Adult Generalized Imitation Topographies and the Emergence of Generalized Imitation in Young Children with Autism as a Function of Mirror Training. Published online: 8 May 2014 # Association of Behavior Analysis International 2014.
Soma Mukhopadhyay (2013). Developing Communication for Autism Using Rapid Prompting Method: Guide for Effective Language; Paperback
