Wednesday, March 31, 2010

Prof. Abdulkalam's message

On the occasion of the world Autism Awareness day, I  thought it would be befitting to post a transcript of Prof. Abdul Kalam's speech that he delivered at SPJ Sadhana School for the Mentally Challenged. There is a short poem of his and inspiring stories of parents who have handled their children s' disabilities admirably well.He says every autistic child is a spiritual challenge to the family.
We will win, win, win with our mighty will 
We are all God’s children,
Our minds are stronger than diamond.
We will win, win, win with our mighty will.
When God is with us, who can be against!
Innovative recovery of an autistic child 


A success story, Nihar

First let me talk about an autistic child who has been cured and trained by Sadhana School. Nihar presently a student of Visual Arts and Crafts was diagnosed of autism when he was four years old by his parents based on certain symptoms in his communication, walking, and aggressive behaviour.

The parents admitted Nihar in a regular school where teachers were available who could teach special teacher till he was 12. This was not of much help and Nihar was brought to SPJ Sadhana School, tied up in dupattas. He was taken in the ITU (Intensive Therapy Unit) for the first three years, which was a great challenge. His physical violence was really unmanageable both at the school and home. In the classroom he had zero sitting tolerance. This condition improved after his first auditory re-training.

Teachers of Sadhana School worked with Nihar using the programme “Facing Autism through Communication with the Environment”. The programme had four phases.

By using the environment, the innate abilities of Nihar for music and art came to the fore during the third year at S.P.J. and he showed signs of settling down and doing work given to him in the pre-vocational classroom. He started using eye contact and could focus on what was being said to him.

Due to strong inclination towards art, he was promoted to the art department for his vocational training along with alternative therapies like yoga, laughter therapy and brain gym etc. This phase of the programme is based on the integration of the left and the right brain thereby developing the whole personality of the student and enabling him to overcome his autistic disabilities to an extent.

The third phase of the programme was “Linking & Initiating a Network of Communication through Synergy” wherein he was respected and treated as a member of society and had the potential to reach greater goals. This mentoring strategy created a synergy between the mentor and the mentee, between peers and between the student and society. Here Nihar learnt to become ‘part of the group’ in the Visual Arts & Crafts department, interacting with his peers and accompanying them on the outdoor educational excursions. Nihar’s behavioral change took place over a period of one year.

In the last phase the school normalized the parental behaviour and tried to remove psychological blocks towards disability thereby enabling them to become totally accountable and participate fully in the students’ day-to-day living. Nihar’s mother had to be counseled to help her overcome her anxiety and apprehensions, which prevented Nihar from becoming independent. She co-operated with the school programme and really worked hard with her son. Today she is proud mother of Nihar and his achievements.

Nihar completed his training with SPJ Sadhana School for 14-years before joining Shraddha Charitable Trust and has successfully completed two years of his internship. He is an earning member of society with a salary of Rs. 3000. Today, Nihar is an independent individual enjoying all the activities and competitions. He recently participated in the singing competition held amongst the normal children and won the 1st prize. I congratulate the researchers, teachers and staff of SPJ Sadhana School for taking up this challenge and empowering master Nihar even though he was admitted late in the school.

The message we get from Nihar’s experience is, that the parents should admit the autistic child in the school early instead of waiting for many years. Also there is a need for training large number of teachers who can handle special children and be posted to regular schools. This will at-least enable early recognition of abnormality leading to admission of the child in the right atmosphere for treatment and training. I am sure, the educators of special children will make note of this message and take action to propagate among the parents, teachers and the trainers, so that the special children are dealt with in a proper manner without undue worry for the parents, teachers and the community.

Now I would like to share with you a real life story which happened two decades ago in Honolulu. This incident I read in the book titled “Everyday Greatness” written by Stephen R. Covey.

 
Make the impossible, possible 
Lindy Kunishima and Geri the mother had two daughters Trudi, thirteen, and Jennifer, nine, and had a small son Steven. At the age of eighteen month, Geri detected something abnormal with his son Steven. A CT scan by a neurologist revealed that the vermis, an area of the brain that transmits messages to and from the body’s muscles, had not developed. The neurologist declared that, Steven will never walk or talk, that requires muscle control and he is profoundly retarded. Geri couldn't eat or sleep for days. Looking at the mother's sadness, Trudi challenged the doctor’s prognosis and announced that, "she did not believe what the doctor said about Steven and took a note that she will work with the mother till Steven becomes normal. They started reading a passage to him everyday on the dinner table which became a habit. Jennifer and Trudi also asked questions and pointed out animals or people illustrated in the hooks. For many weeks there was no response for Steven.

After three months, one evening Steven suddenly wriggled away from the cushions. The family watched him inching towards the children's books. Steven flipped through the book till he saw the page filled with pictures of animals. Then, just as quickly as it opened, Steven's world shut down again. The following night, as Jennifer prepared to read, her brother crawled to the same book and opened the same page again. This showed that "Steven got a memory" which continuously improved.

Both Trudi and Jennifer played the piano in the presence of Steven. One day after practicing, Jennifer lifted Steven from his place under the piano. This time, he was uttering, new sound. He was humming the music and enjoyed. Simultaneously, the family also worked to build up his muscles through a massage school. Geri, Trudi, and Jennifer dabbed peanut butter on the boy’s lips, by licking it off, he exercised his tongue and jaw. When Steven was four and a half years old, he still couldn't speak words, but he could make "aaah" and "waaah" sounds and he had a remarkable memory. After studying a 300 piece jigsaw puzzle, he could assemble the pieces in one sitting.

After many rejections, Steven was admitted in the Pre-School by Louise Bogart of Robert Allen Montessori School who found that Steven was determined to make himself understood.

One day, Bogart stood off to the side and was watching the teacher work with another child on numbers. "What number comes next” the teacher asked. The child drew a blank. "Twenty!" Steven blurted. Bogart's head swiveled. Steven had not only spoken clearly, but also given the correct answer. Bogart approached the teacher. "Did Steven ever work on this?" she asked. "No,' the teacher answered. "We worked with him a lot on numbers one through ten. But we didn't know he had learned any beyond ten." Bogart told his mother that, "This is just the beginning of what the Steven is capable of”. Bogart said. His motor skills remained poor, so Jennifer, Geri, and Trudi worked hard at making his written scrawl legible. "I can do it.' Steven assured Jennifer one day. "Just give me time”.

After that, Steven continuously improved and was admitted to a mainstream Catholic School in 1990. Such is the power of collective determination to cure a child. 



Tamana the special child 

Now I would like to present an experience of a mother whose child had cerebral palsy. In the year 1970, Tamana’s mother gave a birth to a baby girl from a renowned Hospital. At that time in that Hospital there was no provision for a Caesarian operation. The attending doctor insisted on natural birth. The labor pain started at10.pm and continued upto 2.00 am. Then the doctor applied forceps for the delivery which damaged the brain of the child. Also the prolonged labor pain caused severe hypoxic conditions for the child.

After the birth, the child was unable to hold the head and take milk. The hands and legs were crossed and opening outwards. After 13 days, Tamana was taken to Post-Graduate Institute at Chandigarh. The EEG could not detect the damage. The doctor advised her to go a bigger hospital. It took 2 months for reaching there. When CT Scan was conducted, they found that there was a severe damage in the brain and there is no cure for it. Doctor said, “No improvement is possible”. All that happened is happened. If at all anything happens it is going to be late milestones or delayed milestones.

Mother never gives up: When the Tamana was about 3 months old, she was taken to Doctor Firoz in Bombay and Tamana and her mother spent 1 year in the hospital. He advised many exercises for balancing the energy. After this treatment Tamana was taken to US for further treatment. A lot of physiotherapy was done. She was hung upside down by proper ropes on hands and waist. The feet were to touch the ground and bounce. She was to balance herself on the legs when touching the ground. The swiz ball also was applied, to give her coordination of various muscles. Finally, it took 6 long years to make her stand on her legs.

While Tamana’s parents were in north-east, on the advice of a Narangivala, Tamana’s mother used to immerse her in a mud pit vertically upto shoulders. Then chilly was applied on her mouth. This treatment was done for 3 months everyday for over 15 minutes. As a result of this exercise, the drooling stopped, tongue got more control and words started coming out of Tamana’s throat. While putting in the pit, the feet got stabilized and the other parts also got set. Earlier as the mother was all the time carrying the child around, the leg muscles had not developed at all. At the age of 7, Tamana started standing up. Later she also started climbing the steps with the help of railing, she found it easy and interesting. This helped her develop her concerned muscles.

Simultaneously, Tamana’s mother started giving her variety of water proof books for reading. Tamana began to see understand and read them slowly. Her Mother also used to talk to her continuously. Tamana understood a lot though she was not able to respond or express her feelings back. She was absorbing all those information. And the family kept on talking to her.

At the age of 9 she started talking. All the exposure she had so far now began to come out as expressions. Concentration and abstraction was still difficult for her. Discrimination was very difficult to her which made the mother anxious. She was put to a rigorous course of many hours of different types of learning and work.

She joined Mount Carmel school and started going by a 4 wheeler cycle. Later she began to go in a bicycle. She passed 10th Class and plus 10+2 from national open school with 68 % marks. Her most favorite subject was domestic science. She also completed a course in tourism and Teacher’s Training from IGNOU. She now spends, 3 hours per day on the internet. She continues to do some breathing exercise and Pranayama. She began to dance at the age of 11 year. Her typical day now includes attending Language development class, western music, other work, kathak dance, news paper reading for an hour, teaching in DPS and swimming. Now she has also completed B.A. programme in counseling. 

Today, Tamana is teaching at the DPS infant school, moving smoothly with children and other teachers. Tamana’s experience will definitely provide a great insight on, how parents should persevere and provide the right type of environment, medical intervention and psychological support for bringing normalcy among special children.

Conclusion

Any disorder in human faculty such as autism increases dependence on others and reduces the self esteem of the individual. Researchers must direct their efforts in bringing about a sense of equality amongst children affected by autism. Equality can be generated by prevention, early detection, appropriate training to acquire certain skills and engaging the minds of affected children in productive efforts to enable them to lead a normal life. SPJ Sadhana School is an important component for achieving this endeavor. I am sure that such collective action will bring smiles to the faces of mentally challenged children, their parents and light the lamp of happiness in their family.

While we are finding scientific and training solution for early diagnosis and cure of many types of mental challenges I would like to suggest to the parents to recite the poem, along with the children every night before going to sleep in their mother tongue.

Deliver me from fear
I am not alone,
God is always with me.

If God is for me,
Who can be against.

I sought the Lord, He heard me,
Delivered me from fear.

Divine cure and divine light penetrated into me
And cured my pain in body and soul.

Divine beauty enters into me,
And blossoms into happiness.

When God is for me, who can be against?

This song can strengthen the mind and body of a child and provide good feelings to the parents and care givers. Every autistic child is a spiritual challenge to the family. Can we find the purpose of our life in supporting the life of an autistic child, thus making the child’s life purposeful.

May God bless you. 



                                To all of you who read the entire post , I have only one thing to say that  his message is truly  motivating and humbling. Many of us do get bogged down with our day to day concerns and pressures when handling our children, but stories like these inspire you to carry on.

World Autism Awareness Day

April 2nd is the autism awareness day and a  important day for many of  of us. It is an occasion for us to spread awareness, share our concerns and voice our opinions. The autism society of India, Bangalore  is organizing an event to commemorate the day. The program for the evening is as follows
Venue: Rotary Auditorium, Malleswaram
3 – 4 PM – painting/ fun activity for students,
4 – 5 PM – 
parents/teachers share,5 – 5.30 – tea break,
5.30 – 7.00 – 
music/dance programThe main singer for the evening is Mayukh of Zee TV and Channel V
music program. His songs will be interspersed with performances by
children with autism.
Entry fee: Rs. 50/-   for further details and tickets you can contact:ASHA 080-23225279 / info@ashaforautism.com,
IRC 080-26670001/autismirc@gmail.com

Friday, March 26, 2010

Abhi’s jalebi’s

                                   The title sounds like it is a rip off from one of the Amar chitra comics I grew up on.  Abhi is another mother and has just started off on the GFCF diet. Half a month into the diet she has already some mouth watering receipes under her belt. She tried urad dal (split black gram, deskinned) jalebis with no additives.The condition being that she soaked the dal/pulses only for half a hour before grinding. I thought adding saffron might give it colour.Saffron also has cooling properties. Another receipe she tired was sago payasam (sago pudding) in raagi milk.To make ragi milk, soak ragi overnight, and make a liquid of it by placing it in the blender, strain it with a muslin cloth. When the milk just begins to boil remove it from the flame. Ragi milk has a shelf life of two days. Last summer I had put a post on different  receipes for juices fothe  summer.This time I tired making smoothies with ragi milk, but it was not as creamy or frothy as the regular one. Another option she suggested was to try cashewnut milk.  Powder the cashews and add water for the creamy feel, making it ideal for smoothies. I am yet to try this one out.  No heating is required for cashewnut milk.

Friday, March 5, 2010

Bad Behaviour

               Is all behaviour acceptable because the child is autistic? In one of her  interviews,  Temple Grandin had to say autism is used too much as an excuse for bad behaviour.This is true in many  a situations atleast for me.What is permissible behaviour and what is not is to be defined to the child by us. I remember at NIMHANS, Dr. Yamini Hari told us that she had been observing Ramam and that he was all over the place. It is our job to explain that her office or anybody else is off limits to him.  I did this when Ramam started going to Chandrasekhar Institute. Initially he would rush in to the other rooms, and pull out the objects placed by therpaists for their sessions. Now he knows he has to wait in the waiting area for his turn. Similarly when I had moved to Bangalore and was looking for a day care for my daughter, I approached one of the centres and again Ramam began pulling out stuff, throwing them ….. So I told the lady in charge by way of justification that he was autistic, but then she insisted that I tell him to put the toys back. I was put off and though how was I to talk to her if I were to keep handling him.  Subsequently, much later I came to know that she had 2 autistic children in her day care, and she was very much aware of the problem. The easiest way to palm off bad behaviour is to label it sensory, he is pinching, and it is probably a sensory issue. I find therapist also doing it sometimes, giving   him a soft ball to sueeze, all in good faith. I don’t deny sensory issues, some childen do have serious problems, but some of it requires firm handling. Ramam loves  to pour and wanted to do only that for a session. We refused, and he threw a tantrum, but finally settled down to work. He was allowed to pour at the end of the session. Hope I have made my point.
                      Also long drawn explanation as to pinching is a bad habit, questions why are you pinching Ramam, it is painful don’t seem to serve the purpose. A simpe NO and pulling off his hands mybe a better way to handle it is my personal viewpoint. Some therapists tried out other techniques as drawing a cross every time he pinched as a way of admonishing or tearing a piece of paper. Soon it turned out to be a game and he loved the crosses and tearing. It has now become an attention seeking behaviour with him. It is best to curb a bad behvior right at the beginning rather than endure it.  Please take my pearls of wisdom seriously , coming as they are  straight  from the horses mouth.
                                    Two posts in a day ,  looks like I am having a lot of free time !!!!!!!!!                                       

Ramayana, ASHA School

The students and staff of ASHA, Basweshwara nagar put up a brilliant show on the occasion of their annual day. The theme chosen was Ramayana. It was a 3 hr show. The effort taken was there for everybody to see. Details to costume make up, the props, lighting…… different backdrops for the various scenes. The children also performed wonderfully well.  The scenes where Lakshman draws the rekha asking Sita not to cross the Lakshman rekha, Sita crying for help as Ravana abducts her, Rama’s grief all well enacted.  Of couse there were Bollywood songs to pep up the proceedings adding zing to this Ramayana. Songs from Jab we met to Welcome to Sarjapur makingtheir mark. Ravana stole the show with his ever smiling countenence, a Ravana of such  cheerful disposition, he could give the original Rama of the Ramamand sagar RAMAYANA  fame a run for his money.There were  a couple of lighter moments when  young Hanuman decided to torch Lanka.with his tail. He could not have enough of it and he kept running in circles and had to be gently pulled away .The teachers masqueraded as animals and helped  the vanaras build the bridge across the ocean. Maybe our directors could borrow an idea or two from them. Even the able ones were guiding the not so able ones surreptitiously on the stage. It was a great team effort from the word go.
                The back stage was also a centre of actvity , with some children changing costumes, the staff and some mothers trying to keep the tempers from raising (they were after all handling the stars of the evening), juice,  chips ,kurkure packets strewn all over the place.  It might as well be the filmfare awards night with so much hungama backstage.
                         To conceive and put the whole thing into action was a humongous task. The vision and execution complemeted each other. The show came to an end with what has now become an anthem hum hoge kamyab. Many in the audience were moved to tears including myself. I wrote this post  to show how much we can  push ourselves, nothing is impossible. 97 familes went back happy and contended that long evening for once happiness overshadowing grief.
                                      As for Ramam, he danced well. Much to our happiness he maintained his cool after three hours of waiting, something that would have been unimaginable even 6 months back.  Kudos to Jaishree and her team.

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