| Never Give Up! |  |
| Never Give Up! |  |
Here is a narration, which explains why one should never give up and how transformations can happen.
One day I decided to quit...
"Yes", I replied.
"When I planted the fern and the bamboo seeds, I took very good care of them.
I gave them light. I gave them water.
The fern quickly grew from the earth. Its brilliant green covered the floor.
Yet nothing came from the bamboo seed.
But I did not quit on the bamboo. In the second year the Fern grew more vibrant and plentiful.
And again, nothing came from the bamboo seed. But I did not quit on the bamboo. He said.
"In year three there was still nothing from the bamboo seed. But I would not quit.
In year four, again, there was nothing from the bamboo see.
I would not quit." He said.
"Then in the fifth year a tiny sprout emerged from the earth.
Compared to the fern it was seemingly small and insignificant...But just 6 months later the bamboo rose to over 100 feet tall.
It had spent the five years growing roots. Those roots made it strong
and gave it what it needed to survive.
I would not give any of my creations a challenge it could not handle."
He said to me. "Did you know, my child, that all this time you have been struggling, you have actually been growing roots"
"I would not quit on the bamboo. I will never quit on you."
"Don't compare yourself to others." He said. "The bamboo had a different purpose than the fern. Yet they both make the forest beautiful."
"Your time will come", God said to me. "You will rise high"
"How high should I rise" I asked.
"How high will the bamboo rise" He asked in return.
"As high as it can" I questioned.
"Yes." He said, "Give me glory by rising as high as you can."
I left the forest and bring back this story.
I hope these words can help you see that God will never give up on you.
Never give up.
One day I decided to quit...
I quit my job, my relationship, my spirituality...
I wanted to quit my life.
I went to the woods to have one last talk with God.
"God", I said. "Can you give me one good reason not to quit?"
His answer surprised me...
"Look around", He said. "Do you see the fern and the bamboo?"I wanted to quit my life.
I went to the woods to have one last talk with God.
"God", I said. "Can you give me one good reason not to quit?"
His answer surprised me...
"Yes", I replied.
"When I planted the fern and the bamboo seeds, I took very good care of them.
I gave them light. I gave them water.
The fern quickly grew from the earth. Its brilliant green covered the floor.
Yet nothing came from the bamboo seed.
But I did not quit on the bamboo. In the second year the Fern grew more vibrant and plentiful.
And again, nothing came from the bamboo seed. But I did not quit on the bamboo. He said.
"In year three there was still nothing from the bamboo seed. But I would not quit.
In year four, again, there was nothing from the bamboo see.
I would not quit." He said.
"Then in the fifth year a tiny sprout emerged from the earth.
Compared to the fern it was seemingly small and insignificant...But just 6 months later the bamboo rose to over 100 feet tall.
It had spent the five years growing roots. Those roots made it strong
and gave it what it needed to survive.
I would not give any of my creations a challenge it could not handle."
He said to me. "Did you know, my child, that all this time you have been struggling, you have actually been growing roots"
"I would not quit on the bamboo. I will never quit on you."
"Don't compare yourself to others." He said. "The bamboo had a different purpose than the fern. Yet they both make the forest beautiful."
"Your time will come", God said to me. "You will rise high"
"How high should I rise" I asked.
"How high will the bamboo rise" He asked in return.
"As high as it can" I questioned.
"Yes." He said, "Give me glory by rising as high as you can."
I left the forest and bring back this story.
I hope these words can help you see that God will never give up on you.
Never give up.
| Force comes in pairs! | |
| Force comes in pairs! | |
Ok. Transformation does happen. But when can I expect it? How long am I to wait? Will it happen definitely? Is faith and hope alone enough to enable such a transformation?
These thoughts dominate the minds of every special parent, and I am a part of them.
Newton's Third Law of Motion - For every action, there is an equal and opposite reaction.
The statement means that in every interaction, there is a pair of forces acting on the two interacting objects. The size of the forces on the first object equals the size of the force on the second object. The direction of the force on the first object is opposite to the direction of the force on the second object. Forces always come in pairs - equal and opposite action-reaction force pairs.
Initially, yes. When the child is initially diagnosed with autism, the parent, not knowing how to handle, pulls the child in one direction and the child goes in the opposite direction.
And a force always comes in pairs, the mother and the child, or parents and the society. Call it tension force, spring force or frictional force.
Tension force, as it creates a lot of tension in the parent while handling the child.
Spring force, which sends the child back to the parent like a spring, how much ever they try inclusion.
Frictional force, which dominates the household to which the child belongs, continues as long as it is given importance.
It is basic human psychology to expect a result for every action. For a parent to work consistently with her child with no reaction from the child but hoping for the best, calls for being someone beyond all this. That’s what parents of persons with autism are!
With all these forces acting all the time, the parent has to work with the child and believe that she will succeed. It is this combination of belief, hope, confidence and action that results in the transformation of the child.
It would be appropriate for me to give this poem to you which is self explanatory.
The Special Mother
by Erma Bombeck
Most women become mothers by accident, some by choice,
a few by social pressure and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how these mothers are chosen?
Somehow I visualize God hovering over Earth
Selecting his instruments for propagation with great care and deliberation.
As he observes, he instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew."
"Forrest, Marjorie, daughter. Patron Saint, Celia."
"Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
Finally he passes a name to an angel and smiles. "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter?
That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.
Once the shock and resentment wear off she'll handle it."
"I watched her today.
She has that sense of self and independence so rare and so necessary in a mother.
You see, the child I'm going to give her has a world of it's own.
She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time, she will be witness to a miracle and know it.
I will permit her to see clearly the things I see--ignorance, cruelty,
prejudice--and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life
Because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles.
"A mirror will suffice."
These thoughts dominate the minds of every special parent, and I am a part of them.
Newton's Third Law of Motion - For every action, there is an equal and opposite reaction.
The statement means that in every interaction, there is a pair of forces acting on the two interacting objects. The size of the forces on the first object equals the size of the force on the second object. The direction of the force on the first object is opposite to the direction of the force on the second object. Forces always come in pairs - equal and opposite action-reaction force pairs.
Initially, yes. When the child is initially diagnosed with autism, the parent, not knowing how to handle, pulls the child in one direction and the child goes in the opposite direction.
And a force always comes in pairs, the mother and the child, or parents and the society. Call it tension force, spring force or frictional force.
Tension force, as it creates a lot of tension in the parent while handling the child.
Spring force, which sends the child back to the parent like a spring, how much ever they try inclusion.
Frictional force, which dominates the household to which the child belongs, continues as long as it is given importance.
It is basic human psychology to expect a result for every action. For a parent to work consistently with her child with no reaction from the child but hoping for the best, calls for being someone beyond all this. That’s what parents of persons with autism are!
With all these forces acting all the time, the parent has to work with the child and believe that she will succeed. It is this combination of belief, hope, confidence and action that results in the transformation of the child.
It would be appropriate for me to give this poem to you which is self explanatory.
The Special Mother
by Erma Bombeck
Most women become mothers by accident, some by choice,
a few by social pressure and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how these mothers are chosen?
Somehow I visualize God hovering over Earth
Selecting his instruments for propagation with great care and deliberation.
As he observes, he instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew."
"Forrest, Marjorie, daughter. Patron Saint, Celia."
"Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
Finally he passes a name to an angel and smiles. "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter?
That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.
Once the shock and resentment wear off she'll handle it."
"I watched her today.
She has that sense of self and independence so rare and so necessary in a mother.
You see, the child I'm going to give her has a world of it's own.
She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time, she will be witness to a miracle and know it.
I will permit her to see clearly the things I see--ignorance, cruelty,
prejudice--and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life
Because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles.
"A mirror will suffice."
| Transformations do happen. They are real. | |
| Transformations do happen. They are real. | |
Generally, when we talk of transformation, we refer to
Let me add one more to this list of transformation that makes every spectator watch in awe.
A special child transforming into a responsible, useful and caring human being.
A child who needed full time attention during the early stages and consumed a lot of energy of the parents and family, grows up to become a human in the true sense of the word, like a butterfly from a pupa.
That person, the special child, throws light on the values of life for several people who come into contact with him, more fascinating than the prism.
The untiring efforts and faith of the family, the educators and therapists contribute towards polishing the personality of this special person, thereby making him a precious citizen, like the diamond.
More miraculous than pearl is the true personality, which was caught inside the uncooperative mind for years and emerges gradually.
Like the leaves, the special person’s changes are golden and precious.
Like the windmills, the parents do get a lot of energy themselves during the process of making a difference to the life of their special child.
I am sure many parents would have witnessed such miracles and transformations.
Yes, indeed, I have been privileged to witness one such transformation, that of my son, Niranjan. It is experiencing this transformation, and living it 24X7 for 22 years now that gives me the confidence to provide hope to more and more parents. Every time a parent worries whether their child would do this, this and this, my experience would definitely reach them to their benefit. Needlessly to say, 24 X7 efforts, in all respects, needs to be emphasized.
I do really hope that all parents would be blessed with such a transformation of their child.
- The metamorphosis of a pupa into a beautiful butterfly
- How the prism catalyzes seven beautiful colors from one light
- Transforming rough uncut stones to sparkling diamonds, which needs a sharp eye
- The miraculous creation of a pearl inside an oyster
- Green leaves turning gold with the advent of autumn
- Windmills transforming wind energy to electricity, thus transforming lives.
Let me add one more to this list of transformation that makes every spectator watch in awe.
A special child transforming into a responsible, useful and caring human being.
A child who needed full time attention during the early stages and consumed a lot of energy of the parents and family, grows up to become a human in the true sense of the word, like a butterfly from a pupa.
That person, the special child, throws light on the values of life for several people who come into contact with him, more fascinating than the prism.
The untiring efforts and faith of the family, the educators and therapists contribute towards polishing the personality of this special person, thereby making him a precious citizen, like the diamond.
More miraculous than pearl is the true personality, which was caught inside the uncooperative mind for years and emerges gradually.
Like the leaves, the special person’s changes are golden and precious.
Like the windmills, the parents do get a lot of energy themselves during the process of making a difference to the life of their special child.
I am sure many parents would have witnessed such miracles and transformations.
Yes, indeed, I have been privileged to witness one such transformation, that of my son, Niranjan. It is experiencing this transformation, and living it 24X7 for 22 years now that gives me the confidence to provide hope to more and more parents. Every time a parent worries whether their child would do this, this and this, my experience would definitely reach them to their benefit. Needlessly to say, 24 X7 efforts, in all respects, needs to be emphasized.
I do really hope that all parents would be blessed with such a transformation of their child.
| Parents Need To Be Empowered | |
| Parents Need To Be Empowered | |
Very often, I hear parents being told by professionals and others that if a child with autism does not speak by 5 years, he may not speak at all. They are also told that not all children with autism speak. So, expecting him to speak is too much, they are told
The normal human tendency is such that we imagine the worst always. If someone is late in returning home, the human mind makes one worry whether some accident may have occurred. Similarly, we tend to check on a person if he sleeps soundly for a longer time than usual. Similarly, a mother, when told so, wonders whether her child would speak.
As a mother, I do not know any research other than practical research for the past 20 years. There was not much information or guidance in those days, way back in 1987.
Whether my child would form part of the majority of the children with autism and not speak OR
Whether my child would be part of the minority and speak?
Much depends on the attitude of the parent. The parental positive attitude does not mean that a parent would positively expect a child to talk. But it means that the parent would work with a positive attitude towards enhancing opportunities for the child to communicate. It would help the parent to appreciate the child’s communication, whichever is the mode.
This is precisely what is aimed at in the Parent Empowerment Program sessions that I conduct. It focuses on parental attitude in accepting their child, in understanding his needs and appreciating his progress, however little it may be. It also helps the parent to modify their definition of what is normal with respect to their child. This helps them to see their child in the proper perspective. These sessions addresses the needs of each and every child as on that day, and sharing of experiences of parent towards that issue. Instead of hearing what their child would be, they are helped to understand why he is so and how they could help him.
When a parent is told something unpleasant, it is very difficult to accept. Acceptance at each stage is a hurdle. This applies to all parents, not just special parents. So, if they are mentally tuned to accept their child, they do it very well and come to terms with reality easily.
After all, as parents, are we also not human beings? Just like any other person, I too have the same expectations for my child, and I believe that my child is the best. I need time to accept something different, especially with respect to my child.
At this juncture, I quote the verses of “Welcome to Holland”.
The normal human tendency is such that we imagine the worst always. If someone is late in returning home, the human mind makes one worry whether some accident may have occurred. Similarly, we tend to check on a person if he sleeps soundly for a longer time than usual. Similarly, a mother, when told so, wonders whether her child would speak.
As a mother, I do not know any research other than practical research for the past 20 years. There was not much information or guidance in those days, way back in 1987.
Whether my child would form part of the majority of the children with autism and not speak OR
Whether my child would be part of the minority and speak?
Much depends on the attitude of the parent. The parental positive attitude does not mean that a parent would positively expect a child to talk. But it means that the parent would work with a positive attitude towards enhancing opportunities for the child to communicate. It would help the parent to appreciate the child’s communication, whichever is the mode.
This is precisely what is aimed at in the Parent Empowerment Program sessions that I conduct. It focuses on parental attitude in accepting their child, in understanding his needs and appreciating his progress, however little it may be. It also helps the parent to modify their definition of what is normal with respect to their child. This helps them to see their child in the proper perspective. These sessions addresses the needs of each and every child as on that day, and sharing of experiences of parent towards that issue. Instead of hearing what their child would be, they are helped to understand why he is so and how they could help him.
When a parent is told something unpleasant, it is very difficult to accept. Acceptance at each stage is a hurdle. This applies to all parents, not just special parents. So, if they are mentally tuned to accept their child, they do it very well and come to terms with reality easily.
After all, as parents, are we also not human beings? Just like any other person, I too have the same expectations for my child, and I believe that my child is the best. I need time to accept something different, especially with respect to my child.
At this juncture, I quote the verses of “Welcome to Holland”.
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
| Will my son speak? | |
| Will my son speak? | |
Will he ever utter a word? Will I ever hear him say a word?
This had been my query and worry at all points of time, till he started speaking at 7.
I am not the only soul thinking on these lines. There are thousands and thousands of parents of children with autism, who sleep daily carrying all this and a lot more.
It takes time for one to understand that communication does not essentially mean ‘speaking’ words. Only when that realization happens, do we start appreciating and looking for the various unspoken modes of communication in which the child expresses.
Even then, a very basic, yet strong desire to hear his or her child speak is common to every parent, whoever they may be. Every mother, in particular, is eagerly waiting for the day when her child will call her “amma” or “ ma”. And I don’t think that this by any standards is asking for too much or being greedy.
Till date, every mother that I have met definitely expresses her anxiety as to whether her child would call her one-day. And every time, I can see my own self in that mother and thus fully empathize with her.
Having gone through this stage, my son started saying words at around 7 years, when he would just say a word suddenly, though appropriately. I would refer to them as “golden words”, as he would never repeat it. I used to wonder whether I was just dreaming or he had really said it. Gradually, the frequency of these golden words increased. And so the story goes.
It is not that a mother does not understand what her child wants. She does not need words for that. But her urge that her child be understood by all is what makes her over anxious about the entry of words in his life.
If the plan of God is such, so be it. He should definitely have a plan for such a person to have an effect on society. It also makes us as “regular persons” to wonder whether we value this greatest gift of God and use it for what it is meant. Let us take a moment to think about it before we wonder why some don’t speak.
This had been my query and worry at all points of time, till he started speaking at 7.
I am not the only soul thinking on these lines. There are thousands and thousands of parents of children with autism, who sleep daily carrying all this and a lot more.
It takes time for one to understand that communication does not essentially mean ‘speaking’ words. Only when that realization happens, do we start appreciating and looking for the various unspoken modes of communication in which the child expresses.
Even then, a very basic, yet strong desire to hear his or her child speak is common to every parent, whoever they may be. Every mother, in particular, is eagerly waiting for the day when her child will call her “amma” or “ ma”. And I don’t think that this by any standards is asking for too much or being greedy.
Till date, every mother that I have met definitely expresses her anxiety as to whether her child would call her one-day. And every time, I can see my own self in that mother and thus fully empathize with her.
Having gone through this stage, my son started saying words at around 7 years, when he would just say a word suddenly, though appropriately. I would refer to them as “golden words”, as he would never repeat it. I used to wonder whether I was just dreaming or he had really said it. Gradually, the frequency of these golden words increased. And so the story goes.
It is not that a mother does not understand what her child wants. She does not need words for that. But her urge that her child be understood by all is what makes her over anxious about the entry of words in his life.
If the plan of God is such, so be it. He should definitely have a plan for such a person to have an effect on society. It also makes us as “regular persons” to wonder whether we value this greatest gift of God and use it for what it is meant. Let us take a moment to think about it before we wonder why some don’t speak.
| Accepting differences | |
| Accepting differences | |
I now move on to the next step in my son’s life, that of trying to integrate him into regular schools. The issues relating to inclusion, socialization and communication started even then.
The exact diagnosis of autism came to him only when he was 5. I would like to share with you what actually happened till such time.
Niranjan was admitted into pre KG in a regular school nearby, as we thought that it may help him to learn speech and play from other children. Not knowing the magnitude of his condition, we presumed that all he needed to learn was just that.
I observed that he would not dare put his foot down in an unknown territory, till he gets used to it. The teacher would tell me everyday that he just sat in a place, did not play any games, did not put his foot down in the sand, did not repeat anything in class, would not even eat his snack, etc. Hence, from day one at school, I listened to these complaints about him, about which even I did not know what to do.
It surprised me that, whenever I sang the rhymes at home, he would do the action. He made it clear to me that he comprehended what was said in class. It made me happy and also helped me to proceed in that direction.
Unfortunately, this was not sufficient for the school authorities. They expect a child of 2 to repeat the rhymes, say many things, run and play, come happily into the class, cry on the first day of the week, eat from the others snacks box, etc. Little do they realize their role in laying the foundation in the true sense of the term for some of the children.
At the end of the year, I was asked to meet the principal of that school, which has its reputation for getting cent percent results. She said” Your son has some problem and so, please try him in another school.” I tried explaining to her that he could even continue in the same class for another year, as he was benefiting from the company of other children. I also told her that he does the actions at home and is learning definitely.
And, we were sent out with a heavy heart and with no direction being given as to where I could find such a school. The pain for a special parent is not just having the child, but also that of having to listen to complaints every day of their life, for which no one has any ready made solutions. This happens to every special parent who is desperate to help his or her child.
Accepting a different person becomes very difficult for any section of the society. But dealing with a difficult person is acceptable at all stages.
The role of education provided by a school has changed over the time. Imparting greater values of life is far more important than just mere qualification.
Being just 24 years old, I am sure that I was not strong enough in expressing my views, that day as I am today. I wished I had the courage to tell the principal that day, failure on her part to do her duty. I wished that I could talk of the role of society in including these children in all spheres. How I wished that the teacher who complained every day, joined hands with me to find out how to help him, rather than putting it entirely on my shoulder.
As Dr Abdul Kalam put it in his interview yesterday, 17th August 2007 addressing students at Delhi, the moral science lectures that he had received at college, had made a great impact on the values of life in his own experience.
In order to achieve the vision for our nation, inclusion of such children should happen in the true sense of the term. Every person forming part of the society should start realizing his or her role in this regard.
The exact diagnosis of autism came to him only when he was 5. I would like to share with you what actually happened till such time.
Niranjan was admitted into pre KG in a regular school nearby, as we thought that it may help him to learn speech and play from other children. Not knowing the magnitude of his condition, we presumed that all he needed to learn was just that.
I observed that he would not dare put his foot down in an unknown territory, till he gets used to it. The teacher would tell me everyday that he just sat in a place, did not play any games, did not put his foot down in the sand, did not repeat anything in class, would not even eat his snack, etc. Hence, from day one at school, I listened to these complaints about him, about which even I did not know what to do.
It surprised me that, whenever I sang the rhymes at home, he would do the action. He made it clear to me that he comprehended what was said in class. It made me happy and also helped me to proceed in that direction.
Unfortunately, this was not sufficient for the school authorities. They expect a child of 2 to repeat the rhymes, say many things, run and play, come happily into the class, cry on the first day of the week, eat from the others snacks box, etc. Little do they realize their role in laying the foundation in the true sense of the term for some of the children.
At the end of the year, I was asked to meet the principal of that school, which has its reputation for getting cent percent results. She said” Your son has some problem and so, please try him in another school.” I tried explaining to her that he could even continue in the same class for another year, as he was benefiting from the company of other children. I also told her that he does the actions at home and is learning definitely.
And, we were sent out with a heavy heart and with no direction being given as to where I could find such a school. The pain for a special parent is not just having the child, but also that of having to listen to complaints every day of their life, for which no one has any ready made solutions. This happens to every special parent who is desperate to help his or her child.
Accepting a different person becomes very difficult for any section of the society. But dealing with a difficult person is acceptable at all stages.
The role of education provided by a school has changed over the time. Imparting greater values of life is far more important than just mere qualification.
Being just 24 years old, I am sure that I was not strong enough in expressing my views, that day as I am today. I wished I had the courage to tell the principal that day, failure on her part to do her duty. I wished that I could talk of the role of society in including these children in all spheres. How I wished that the teacher who complained every day, joined hands with me to find out how to help him, rather than putting it entirely on my shoulder.
As Dr Abdul Kalam put it in his interview yesterday, 17th August 2007 addressing students at Delhi, the moral science lectures that he had received at college, had made a great impact on the values of life in his own experience.
In order to achieve the vision for our nation, inclusion of such children should happen in the true sense of the term. Every person forming part of the society should start realizing his or her role in this regard.
| The power of faith and hope | |
| The power of faith and hope | |
In continuation of my recent article on “Faith and Hope”, I wish to share with you another article, written by another person, but strangely seems to coincide with my views on faith and hope.
Forget The Diagnosis
Autism! Pdd nos! Aspergers syndrome! ADHD! High functioning! Low functioning! Delayed! Hearing these words about your child can be crushing. They can devastate you to your very core. The good news is THEY DON’T HAVE TO! Let me tell you why….
It doesn’t matter. That’s right. It simply doesn’t matter. If you want to really help your child then read on. I’m serious. Don’t be like the thousands who wish they had “lived” this concept sooner.
Pretend for a moment you have a newborn. He is simply perfect. By the time he is two years old, his fingers are so long, they look strange. You go to a renowned physician and ask “What’s wrong with my child? Why are his fingers so long?”. The physician smiles and says “Your child has a condition called spindle fingers. He has a natural gift for playing musical instruments. Many dream of having this talent”.
You’re absolutely thrilled and can’t wait to share the news. You rush home but on the way you stop to buy a toy xylophone, piano, drum set and flute. You set them out on the floor when you get home and you watch proudly as your toddler strums each one of them. You don’t care that everyone else thinks it just sounds like noise. You have a budding musician on your hands and he’s practicing!
As the months go by you encourage your child to play instruments. He gets a little older and expresses his preference for the piano. You take him to piano lessons, listen to famous piano players and perhaps even go to concerts. You explain to your son that his fingers are long because he is talented at playing the piano. Your son plays the piano beautifully. He is proud of his fingers and his talent. You are proud of your son.
You run into the physician a few years later. You tell him proudly about your child’s piano skills. He smiles broadly and says “I made it all up. There is no condition called spindle fingers”. “What?” you shriek “that’s impossible. My child is an excellent player”.
“Of course he is” says the physician “It’s called belief. You believed in your child’s fingers. You believed in his talent. You encouraged him. It didn’t matter how many mistakes he made. You hardly heard them because you knew he was on the path to greatness. Your son felt your belief. He saw it in your eyes. He felt it course through his being. It inspired him. Every time he looked at his long fingers he thought about his talent. He felt proud of himself. He knew he could do it. Your unwavering faith inspired him to be the best he can be”.
My advice to you is this. Forget about the boxes and the labels. Ignore the judgments. Your child is fascinating. Your child is a unique and wonderful being who is incredibly special. Give him the tools. Encourage him on his journey. Never lose faith in him. Stand by his side. Teach him as much as you can. Watch in delight as he soars far beyond everyone’s expectations. Everyone’s except yours and all those who joined your belief along the way! - By Jene Aviram
This article is property of and copyright © 2003-2007 Jene Aviram of Natural Learning Concepts. Reference of this article may only be included in your documentation provided that reference is made to the owner - Jene Aviram and a reference to this site http://www.nlconcepts.com
| Hopeful or hopeless? | |
| Hopeful or hopeless? | |
As a special parent, I come across the words “false hope”. I have very often wondered whether hope can ever be false.
I site classic examples of hope and otherwise from my own experience with my son.
When Niranjan was just 18 months old, a renowned neurologist passed the final verdict that my son can never be normal.
As a parent, I am not here to say whether he was right or wrong. Presuming he was right, what was I expected to do with my child? If I had taken the words of that doctor as right, I would have decided to leave my son in an institution and continue my professional career. After all, why should I waste my time, money and energy in the prime of my life if he is not going to be ok? That could have been the consequence of not giving “false hope”.
I thank God for helping me realize that Divine Power intervenes to disprove the words of any person, in the event of it not being instrumental in a special child’s progress.
Even today, my son may not be “normal” in certain ways. But to reach here, it has taken years of toil, which could not have happened with those words of prediction of the neurologist.
The first words of hope:
A specific mention needs to be made of the physiotherapist, who toiled with him for almost 2 years from when my son was 18 months old. The uninteresting, painful and worrisome travel to the physiotherapy sessions was made enjoyable, painless and a boost, just by the words of hope given by the physiotherapist. Every day of those 2 years, after he finishes his tiresome session with my son, he would be panting for breath but still not forget to tell me “Sister, he is improving very well. Definitely he would start walking very soon. In March he would march to school.” Least would he have expected that these words would help us reach this level of inclusion in an office, 20 years later.
For that moment, those words may have sounded false, as my son did not march in March, as he said. But, he did walk the next March. With those first steps of my son, I got the first signs of hope.
A leading orthopedic examined him and said, “These legs are made to walk. He doesn’t need any special devices. Just take him to all the places where he can watch other children and learn to walk. He will walk”. This hope accelerated my confidence to continue my journey with my son.
Considering my hopeless condition, not knowing the way to proceed, no awareness, all that I had to hold and move up was these words of hope. So I didn’t care whether it was true or not. I needed it. Ultimately the hope proved true.
During these several years, God has shown me the way through the words of several people we have met. Educators, therapists, doctors, friends and well wishers who have stood by us, not caring whether the hope they give me is true or false, but ensuring that we progressed day by day. It is these words of hope that has ensured my very basic existence during difficult trying periods. I can never ever forget these words of hope till my last breath.
Now we are under the able guidance of an eminent neurologist, who gives me a lot of confidence and hope and gives my son medicines. It is this tonic that has helped me traverse through the most difficult period of his adolescence.
Looking back, I wonder whether the words of the physiotherapist were false. I also wonder whether he was not aware of my son’s condition and hence spoke that way. When I asked him recently about this, he laughed and said “ Sister, would you have continued if I had told you that it would take 2 years?”
So what seemed to be false hope then turned out to be true. I strongly believe that it was my faith in those words that made it come true. So when faith is coupled with persistent hard work and determination, we are sure to achieve.
Another factor that makes a hope real is the attitude of the person receiving it. If due to ignorance or if for my convenience, I had partially taken the words of the orthopedic, had firmly believed that he would walk, not taking him to the park or play ground, would it have happened? Probably, I too would end up blaming the doctor for giving me false hope. Partial belief would definitely not help us achieve anything.
Had I taken the words of the first neurologist, maybe I would not be here to share my story with others. Sharing my life experience is solely to give hope to the desperate parents. Having this in mind, my sincere prayer is that let every ray of hope that I give become true with respect to every child. My daily prayer is that let every word of hope given to a parent be taken in true spirit for the parent to become hopeful of the best for their child. No parent should go to bed any day in a hopeless state of mind.
Picture of Niranjan along with me in our recent visit to USA
I site classic examples of hope and otherwise from my own experience with my son.
When Niranjan was just 18 months old, a renowned neurologist passed the final verdict that my son can never be normal.
As a parent, I am not here to say whether he was right or wrong. Presuming he was right, what was I expected to do with my child? If I had taken the words of that doctor as right, I would have decided to leave my son in an institution and continue my professional career. After all, why should I waste my time, money and energy in the prime of my life if he is not going to be ok? That could have been the consequence of not giving “false hope”.
I thank God for helping me realize that Divine Power intervenes to disprove the words of any person, in the event of it not being instrumental in a special child’s progress.
Even today, my son may not be “normal” in certain ways. But to reach here, it has taken years of toil, which could not have happened with those words of prediction of the neurologist.
The first words of hope:
A specific mention needs to be made of the physiotherapist, who toiled with him for almost 2 years from when my son was 18 months old. The uninteresting, painful and worrisome travel to the physiotherapy sessions was made enjoyable, painless and a boost, just by the words of hope given by the physiotherapist. Every day of those 2 years, after he finishes his tiresome session with my son, he would be panting for breath but still not forget to tell me “Sister, he is improving very well. Definitely he would start walking very soon. In March he would march to school.” Least would he have expected that these words would help us reach this level of inclusion in an office, 20 years later.
For that moment, those words may have sounded false, as my son did not march in March, as he said. But, he did walk the next March. With those first steps of my son, I got the first signs of hope.
A leading orthopedic examined him and said, “These legs are made to walk. He doesn’t need any special devices. Just take him to all the places where he can watch other children and learn to walk. He will walk”. This hope accelerated my confidence to continue my journey with my son.
Considering my hopeless condition, not knowing the way to proceed, no awareness, all that I had to hold and move up was these words of hope. So I didn’t care whether it was true or not. I needed it. Ultimately the hope proved true.
During these several years, God has shown me the way through the words of several people we have met. Educators, therapists, doctors, friends and well wishers who have stood by us, not caring whether the hope they give me is true or false, but ensuring that we progressed day by day. It is these words of hope that has ensured my very basic existence during difficult trying periods. I can never ever forget these words of hope till my last breath.
Now we are under the able guidance of an eminent neurologist, who gives me a lot of confidence and hope and gives my son medicines. It is this tonic that has helped me traverse through the most difficult period of his adolescence.
Looking back, I wonder whether the words of the physiotherapist were false. I also wonder whether he was not aware of my son’s condition and hence spoke that way. When I asked him recently about this, he laughed and said “ Sister, would you have continued if I had told you that it would take 2 years?”
So what seemed to be false hope then turned out to be true. I strongly believe that it was my faith in those words that made it come true. So when faith is coupled with persistent hard work and determination, we are sure to achieve.
Another factor that makes a hope real is the attitude of the person receiving it. If due to ignorance or if for my convenience, I had partially taken the words of the orthopedic, had firmly believed that he would walk, not taking him to the park or play ground, would it have happened? Probably, I too would end up blaming the doctor for giving me false hope. Partial belief would definitely not help us achieve anything.
Had I taken the words of the first neurologist, maybe I would not be here to share my story with others. Sharing my life experience is solely to give hope to the desperate parents. Having this in mind, my sincere prayer is that let every ray of hope that I give become true with respect to every child. My daily prayer is that let every word of hope given to a parent be taken in true spirit for the parent to become hopeful of the best for their child. No parent should go to bed any day in a hopeless state of mind.
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| Who showed me the way? | |
| Who showed me the way? | |
Soon after the diagnosis, I knew that something had to be done. But what was that something?
Being a first time mother, I had no clue as to how to proceed. As he had difficulty walking, he was advised physiotherapy. So that was our first step towards progress.
Carrying him every day for physiotherapy was laborious. But gradually I noticed that the attention he got from those around, the conversations that they had with him, seemed to be penetrating into him. So that gave me a clue.
At that stage, Niranjan was a quiet child. Even as he was sitting, he would turn around the tricycle on the floor and rotate the wheels in mid air. Then he would slant his head and look at it for long spells of time. He did the same with the fan too. Whenever we switched on or switched off, he would observe the blades of the fan with so much interest. Whatever be the object, even if it were not round, he could spin it so well that it would fascinate anyone who watches it.
Whenever a car bonnet was opened, he would tuck his head into it and observe the parts with great interest. When any blocks or toy car or toy train was given to him, he would look at it with no interest at all. But whenever a radio or electronic equipment was reachable, he would turn it around and try to understand its mechanism, as to how to open it, operate it, etc. it fascinated it. Similarly, even at 2, whichever be the car or bike, he would instantly comprehend the basic operations for different kinds of vehicles. He was thorough about the details as to how to lock it/ unlock, the handle, the light switches, etc. There was no need to teach him these operations, whereas we would be fumbling not knowing where they were.
He would want to go for hours on the bike, with no end. Even after a very long drive, if we were heading towards home, from whichever direction, he would sense it and start jumping up and down on the bike, literally taking the wheels off the road. This helped me understand that he had very good sense of direction.
Similarly, whenever we went to a place for the second time, he would be the first person to spot the alterations or additions to that environment. Starting from simple things as the placement of the remote or a clock to bigger things as furniture, he was very keen in his observation. What impressed me was his ability to be noticed even without words flowing out of him.
At the physiotherapy center, we got the first ray of hope. The therapist did not do just therapy for my son. He gave me doses of positive thoughts and confidence every day by saying that soon my son would walk. In dire need of those doses of hope, I never asked when he would walk but firmly believed that it would happen soon. This started boosting my desire to go there every day, which was otherwise a very boring and painful routine.
Whenever he would hear some specific music or advertisement on the TV, he would promptly turn around and watch for a few seconds. But when I called him or said something to him, he would make me doubt whether he was hard of hearing. Almost all the parents, who sail the same boat as I do, whom I have met have said the same words about their child.
So even at a time when not much information was available about autism, my son was my teacher. He taught me that he understood many things, that he observed a lot more than he expressed and that he was very sharp.
At the various places that he was “assessed”, they said he should learn several concepts. I wondered why my child was different.
Why was he not responding when called, but turn towards a TV ad? Why was he not acknowledging others around including me, if he could spot even minute differences? It was not that he could not see or hear. He knew the parts of a car or electronic device, but why was he not playing with toy cars or trains?
I started teaching him things that interested him. I changed my method of reaching him. Every time he took any device, I would name it for him, including the minute parts. Similarly, I taught him the radiator, bonnet, boot, engine, steering wheel, accelerator, clutch etc every time he used it. Then he started observing what was said to him.
I never wondered how much he could learn. My one sided conversations, I was sure, resulted in knowledge for my son. I could feel it every moment. The second time he heard a word, he would look at that object. That was his speed of grasping.
Hence my son paved the way for my non traditional teaching methods. Today it has been given several names as techniques and methodologies by professionals in the field. But ultimately, it evolves from the person who needs it most, the child with autism.
Being a first time mother, I had no clue as to how to proceed. As he had difficulty walking, he was advised physiotherapy. So that was our first step towards progress.
Carrying him every day for physiotherapy was laborious. But gradually I noticed that the attention he got from those around, the conversations that they had with him, seemed to be penetrating into him. So that gave me a clue.
At that stage, Niranjan was a quiet child. Even as he was sitting, he would turn around the tricycle on the floor and rotate the wheels in mid air. Then he would slant his head and look at it for long spells of time. He did the same with the fan too. Whenever we switched on or switched off, he would observe the blades of the fan with so much interest. Whatever be the object, even if it were not round, he could spin it so well that it would fascinate anyone who watches it.
Whenever a car bonnet was opened, he would tuck his head into it and observe the parts with great interest. When any blocks or toy car or toy train was given to him, he would look at it with no interest at all. But whenever a radio or electronic equipment was reachable, he would turn it around and try to understand its mechanism, as to how to open it, operate it, etc. it fascinated it. Similarly, even at 2, whichever be the car or bike, he would instantly comprehend the basic operations for different kinds of vehicles. He was thorough about the details as to how to lock it/ unlock, the handle, the light switches, etc. There was no need to teach him these operations, whereas we would be fumbling not knowing where they were.
 |
He would want to go for hours on the bike, with no end. Even after a very long drive, if we were heading towards home, from whichever direction, he would sense it and start jumping up and down on the bike, literally taking the wheels off the road. This helped me understand that he had very good sense of direction.
 |
Similarly, whenever we went to a place for the second time, he would be the first person to spot the alterations or additions to that environment. Starting from simple things as the placement of the remote or a clock to bigger things as furniture, he was very keen in his observation. What impressed me was his ability to be noticed even without words flowing out of him.
At the physiotherapy center, we got the first ray of hope. The therapist did not do just therapy for my son. He gave me doses of positive thoughts and confidence every day by saying that soon my son would walk. In dire need of those doses of hope, I never asked when he would walk but firmly believed that it would happen soon. This started boosting my desire to go there every day, which was otherwise a very boring and painful routine.
Whenever he would hear some specific music or advertisement on the TV, he would promptly turn around and watch for a few seconds. But when I called him or said something to him, he would make me doubt whether he was hard of hearing. Almost all the parents, who sail the same boat as I do, whom I have met have said the same words about their child.
So even at a time when not much information was available about autism, my son was my teacher. He taught me that he understood many things, that he observed a lot more than he expressed and that he was very sharp.
At the various places that he was “assessed”, they said he should learn several concepts. I wondered why my child was different.
Why was he not responding when called, but turn towards a TV ad? Why was he not acknowledging others around including me, if he could spot even minute differences? It was not that he could not see or hear. He knew the parts of a car or electronic device, but why was he not playing with toy cars or trains?
I started teaching him things that interested him. I changed my method of reaching him. Every time he took any device, I would name it for him, including the minute parts. Similarly, I taught him the radiator, bonnet, boot, engine, steering wheel, accelerator, clutch etc every time he used it. Then he started observing what was said to him.
I never wondered how much he could learn. My one sided conversations, I was sure, resulted in knowledge for my son. I could feel it every moment. The second time he heard a word, he would look at that object. That was his speed of grasping.
Hence my son paved the way for my non traditional teaching methods. Today it has been given several names as techniques and methodologies by professionals in the field. But ultimately, it evolves from the person who needs it most, the child with autism.
| Motherhood – A Profession | |
| Motherhood – A Profession | |
With a diagnosis in hand, I was stuck with my child, not knowing what to do next. At that point of time, with very limited information about disability, my knowledge about the subject too was very limited.
Just as we get better with a painkiller or a paracetamol, I wondered whether this diagnosis was going to cure him. Though I knew something needed to be done, little did I realize that so much needs to be done. Being a total stranger to the vast ocean of disability, all that struck me was this. How am I going to bring my son out of whatever he is? I did not know whether it was a disease or whether it needed medication or not. But in spite of all this ignorance, I was very strong that my son needed me to rise up.
Thinking of the past retrospectively, one other thing that I clearly remember is that at no point of time, did we, as husband and wife sit together to arrive at this decision. But till today, we work on the same lines, with untold words.
At this juncture, let me make it a bit light. A man was searching for something for quite long. When his wife enquired what he was looking for, he said” nothing”. She promptly replied “you will find it in the second shelf in your cupboard”. That’s another example of unspoken words.
Coming back to our life, it is not in me to do tasks that anyone and everyone could do, but something, which I alone could do, that of being Niranjan’s mother. The unspoken decision was that my husband would continue his profession of chartered accountancy to earn and I would take up the profession of being a mother.
I call it a profession. I have reasons to do so. At this juncture, I need to touch upon my actual professional and qualification at that point of time.
At the time of my marriage I was a commerce graduate. Just after marriage I did my Law degree at the Madras Law College. In a class of 100 students, there were 7-8 ladies. In the whole college I was the only married lady. But that did not make any difference to me. Happily, I studied and stood university first all the three years, with 3 gold medals. This includes the third year when Niranjan was born. Having in laws at home gave me confidence that he was well taken care of.
Soon after finishing law, I enrolled for the chartered accountancy course. I cleared my intermediate exams in the first attempt, till which time I was not aware of Niranjan’s condition.
Being a wife, a daughter in law, a young mother, and being a student also was tough but challenging. That was the kind of dedication and sincerity with which I pursued my studies, anything for that matter. Leaving things half done irritates me and hence I completed the course along with Niranjan’s treatment and therapy. Probably, my desire to face challenges, coupled with my dedication to complete a task, was what instigated God to give me my precious Niranjan.
Today, sharing with you about all that I studied 20 years back may seem irrelevant to many. But I wish to explain one point, the importance of the profession, of being a mother. To me, from that day, my son and his future seem more important and valuable than all my professional courses. All the years of toil looked so petty as compared to my son.
It is not a sacrifice, but a duty. Hence there was no feeling of sorrow or pity, guilt or unhappiness. Instead, whenever anyone would ask me “what about all that you studied?” I would proudly say, “ I am Niranjan’s mother”. Till date, I continue to say so, and every time he has made me prouder. In fact he has given me more recognition than what any profession could have.
Just as we get better with a painkiller or a paracetamol, I wondered whether this diagnosis was going to cure him. Though I knew something needed to be done, little did I realize that so much needs to be done. Being a total stranger to the vast ocean of disability, all that struck me was this. How am I going to bring my son out of whatever he is? I did not know whether it was a disease or whether it needed medication or not. But in spite of all this ignorance, I was very strong that my son needed me to rise up.
Thinking of the past retrospectively, one other thing that I clearly remember is that at no point of time, did we, as husband and wife sit together to arrive at this decision. But till today, we work on the same lines, with untold words.
At this juncture, let me make it a bit light. A man was searching for something for quite long. When his wife enquired what he was looking for, he said” nothing”. She promptly replied “you will find it in the second shelf in your cupboard”. That’s another example of unspoken words.
Coming back to our life, it is not in me to do tasks that anyone and everyone could do, but something, which I alone could do, that of being Niranjan’s mother. The unspoken decision was that my husband would continue his profession of chartered accountancy to earn and I would take up the profession of being a mother.
I call it a profession. I have reasons to do so. At this juncture, I need to touch upon my actual professional and qualification at that point of time.
At the time of my marriage I was a commerce graduate. Just after marriage I did my Law degree at the Madras Law College. In a class of 100 students, there were 7-8 ladies. In the whole college I was the only married lady. But that did not make any difference to me. Happily, I studied and stood university first all the three years, with 3 gold medals. This includes the third year when Niranjan was born. Having in laws at home gave me confidence that he was well taken care of.
Soon after finishing law, I enrolled for the chartered accountancy course. I cleared my intermediate exams in the first attempt, till which time I was not aware of Niranjan’s condition.
Being a wife, a daughter in law, a young mother, and being a student also was tough but challenging. That was the kind of dedication and sincerity with which I pursued my studies, anything for that matter. Leaving things half done irritates me and hence I completed the course along with Niranjan’s treatment and therapy. Probably, my desire to face challenges, coupled with my dedication to complete a task, was what instigated God to give me my precious Niranjan.
Today, sharing with you about all that I studied 20 years back may seem irrelevant to many. But I wish to explain one point, the importance of the profession, of being a mother. To me, from that day, my son and his future seem more important and valuable than all my professional courses. All the years of toil looked so petty as compared to my son.
It is not a sacrifice, but a duty. Hence there was no feeling of sorrow or pity, guilt or unhappiness. Instead, whenever anyone would ask me “what about all that you studied?” I would proudly say, “ I am Niranjan’s mother”. Till date, I continue to say so, and every time he has made me prouder. In fact he has given me more recognition than what any profession could have.
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