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It's a diet that has high fat and low carbohydrate content, and ensures that one does not put on weight. For several patients suffering from epilepsy, exposure to the ketogenic diet has not only been able to control innumerable seizures but in some cases has also proved to be a cure.

Epilepsy affects approximately one per cent of the population. In India with a population of over 1.2 billion, this translates to around 12 million or 120 lakh persons with epilepsy of whom 25 per cent (30 lakhs) are resistant to any medication and fall in the category of drug resistant epilepsy.

The ketogenic diet was scientifically introduced by Dr Howland of the Johns Hopkins Hospital, USA and Dr Wilder of Mayo Clinic in 1950s, says Mumbai-based neurologist Dr Janak Nathan, who is also the chief coordinator for Purple Day India. March 26 is observed as Purple Day and Nathan has been coordinating with medical professionals and organisations to make the day as one of change for all those suffering from epilepsy.

Now, tailormade to suit Indian conditions, the ketogenic (KG) diet treats patients who have epilepsy that is difficult to control. Nathan, who underwent training at Johns Hopkins Hospital, introduced KG diet in India in 1996.

"There was complete ignorance about the benefits of this diet not just among patients but among doctors as well," Nathan said.

"Our centre in Mumbai has been treating 230 persons with the ketogenic diet - that has now been changed so that the patient does not have to be hospitalised or undergo fasting."

The classical ketogenic diet replicates the effects of fasting by providing a high fat, low carbohydrate but normal protein diet. This forces the brain cells to use ketones for their daily energy needs and seizures among epileptic patients are brought under control. "It was difficult and expensive for persons with epilepsy to get hospitalised or even adopt fasting as part of their diet," explains Nathan. The diet was then modified where the most difficult part - that is fasting - was eliminated.

In a mathematically-calculated doctor-supervised ketogenic diet that is a high-fat, adequate-protein, low-carbohydrate diet , it mimics the aspects of starvation by forcing the body to burn fats rather than carbohydrates. Normally, the carbohydrates contained in food are converted into glucose, which is then transported around the body and is particularly important in fuelling brain function. However, if there is very little carbohydrate in the diet, the liver converts fat into fatty acids and ketone bodies.

The ketone bodies pass into the brain and replace glucose as an energy source. An elevated level of ketone bodies in the blood, a state known as ketosis, leads to a reduction in the frequency of epileptic seizures, says Nathan.

PURPLE DAY
Purple Day was founded in 2008 by nine-year-old Cassidy Megan of Nova Scotia, Canada, with the help of the Epilepsy Association of Nova Scotia. The day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide.

ON MARCH 26, people from around the globe are asked to wear purple and spread the word about epilepsy.

Lavender is the international colour for epilepsy. The lavender flower is also often associated with solitude, which is representative of the feelings of isolation felt by persons with epilepsy.

Epilepsy affects over 50 million people worldwide. That's more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's disease combined. In India, there are about 12 million people with epilepsy.

- Anuradha Mascarenhas, Indian Express, Saturday March 19th 2011

International Volunteer Day (IVD) is celebrated on December 5th of each year by highlighting the significant contribution of volunteers all over the world. UN Resolution for IVD hails the day as an "opportunity for volunteer organisations and individual volunteers to make visible their contributions - at local, national and international levels - to the achievement of the Millennium Development Goals." The ability of volunteers to contribute reflects their capacity to make significant change for the better.

Pratima Jamalabad- A great homemaker, an animal activist, nature lover wished to do some more with her time. She is sharing her experiences of Volunteering at our ChildRaise Centre.

Kavita has been both a dear friend and neighbour for the past 20 years. I have always been witness to her involvement in issues relating to epilepsy and aiding children with autism, learning disabilities, in other words with differently abled people. So when I got a chance to volunteer at her Child Raise centre, I decided to give it a try. So far my teaching abilities were confined to my son and his friends. Nobody in my close circle had an child with autism so I didn't really know what to expect. Would the parents of her students object to my presence there? As it is, I didn't have any qualification that would justify my being there.

However, all apprehensions were laid to rest. On my first visit to the centre I was welcomed by the mothers present there. I was introduced to the students-Michelle, Mukul ..... The first day was spent just in observing the pattern of activities- exercises, reading, vocational training etc. I decided to start reading out to the children and then at a later stage helping them with activities like solving simple arithmetics and English vocabulary.

Initially, I found the going tough. A child with autism does not meet your gaze nor do all of them like to be touched. It was difficult to know if they were listening to my reading out to them as getting an expected response is not possible. By expected response I mean a response a normal child would give like a nod of the head or a smile or an answer.

Kavita & other teacher -Alka was always there to guide me and give me the confidence I so lacked. Little by little, I learned to judge and appreciate their response. I learned to be patient which was a big thing for me as by nature I am an impatient person expecting quick results. I learned to wait until I got an answer, understood their body language and realised that these children have a short attention span.

Since children with autism do not let you know if they have enjoyed an activity or not, it sometimes seemed a hopeless task and I wondered if I was wasting their time as well as mine. But I could soon tell what interested them and what bored them as well as different methods of getting through to them. My biggest reward was when one day Michelle after our reading session reached out and put her hand over mine. Today, I realise that instead of just me teaching them, I have learned a lot.

We urge people to come forward & join /sign up for our V Volunteer Initiative.

Pratima.

James Kenneally is a prolific artist. He frequently shows his work in Schenectady, N.Y., where he lives and, in 2005, was chosen as the New York Governor's Guest Artist. He presented the governor with an original painting of the executive mansion at the reception celebrating the award. James, who is now 37, also has both autism and epilepsy.

Before Jimmy Hobley discovered disco, he was desperate. He couldn't read, couldn't write, couldn't make head or tail of the world. Then he began dancing. Jimmy is one of Sheila Hobley's three boys, all of them autistic. Alex is 16, and the twins, George and Jimmy, are 10. When Alex was born, Sheila'sLife was turned upside down. She was 26, didn't know anything about autism. It wasn't easy, and Sheila and Alex's father split up.

A while later, she got together with Andy. They both wanted children, and Sheila didn't want to worry Andy by suggesting they might be autistic, too. The experts said the chances were minimal - she was told there was a one in 1,000 chance of having another autistic child, figures that have nowadays been revised to between one in 80 and one in 100.

But, sure enough, the twins were autistic. "They both had terrible screaming fits, and they were biters," Sheila says. It got worse. Sheila and Andy couldn't go out socially together. They both think it's a considerable achievement that they've stayed together for 11 years. By the age of three, George was hiding scissors and kitchen knives under his bed. He'd tell his parents they were to kill Jimmy with. She couldn't cope, and started to take anti depressants. "They ripped books up, destroyed toys, wrecked everything," she adds.

However aggressive George was, there was an equally tender side. She was desperate to find something to occupy the twins. And that's where the dancing came in.The front door opens, two high-pitched voices are squealing and it feels as if we've been hit by a tornado. The boys are home from their special school.

Right moves

Sheila says strangers assume Jimmy was a natural on the dance floor: "When he started, he was wobbly. He couldn't even link three moves together." But soon he shone with his extraordinary high kicks and gyrating hips.

He began to win local talent shows. Then regional talent shows. And before long he had reached the finals of the national Disco Kid championships. He became a little bit famous, and a TV film about him and the family was commissioned.

The documentary, made by Liz Bloor, is funny, desperate, and often moving. The great thing is that his dancing has helped him in many ways - it taught him how to socialise and how to deal with success and failure. In short, his brain's wiring, which had been so horribly twisted in his early years, started to straighten itself out.

Learning soon

I ask Jimmy how he thinks the dancing has changed him. First, he lifts his top to show off his six-pack. Sheila says it's benefited Jimmy 100 per cent, but there's been a price to pay for the family. Dancing lessons are expensive, especially with neither Sheila nor Andy working, and she admits the other boys have probably not had their share of the attention.

The boys are eloquent about their problems, particularly George. "Autism means you have learning difficulties," he says. "You have trouble knowing stuff that mainstream kids pick up easy. My behavioural problems are I just can't keep my emotions in, I've got to let them out.

And I'm working on that with my dad." There is also a positive side, he says. It might have taken him ages to learn, but now he's a brilliant reader. "I've got hyperlexia, which means I can read a lot - words that I've not even heard before. I can read words upside down and backwards. It's basically the opposite of dyslexia."

"Do you wish you had something like Jim had?" Sheila asks him gently.

"Yes, but not dancing. I'd rather be a whiz at something creative. Jim always boasts about his dancing and sometimes that really annoys me because I wish I could find something. Mam says I could maybe do rugby because I've got that kind of build."

Living away

Anyway, George says, things will change soon if Jimmy gets into ballet school in Birmingham. Then they will lead separate lives. As Jimmy shows me some of his moves, George drops a bombshell. "I suppose I'd secretly miss him," he mutters. "It would be pretty odd because I've lived my whole life with Jim so far, but if that's what he wants to do." And then the tears come.

Source by Hindutan Times

SSCs sops for autistic students has no takers

Mumbai: It was heralded as a big moment for parents with autistic children when the Maharashtra Secondary School Certificate Board in February spelt out concessions for these differently abled students.It meant children with autism a developmental disorder that affects a childs social and neurological progress could go to normal schools and enjoy the benefits of an integrated education.

But according to the Forum For Autism and Nair Hospitalwhich is one of the assessing centres to hand out the concession certificatenot one student sought concessions for the recently concluded SSC exams.Why The answers are in some ways indicative of the lack of awareness about the disease. First,the announcement was made in January and the procedures were spelt out in February.Not all schools received the government resolution, said Chitra Iyer from the Forum For Autism,a parental group that has been working for better facilities for autistic children.Secondly,there are possibly too few autistic childrenand that too in the high function groupwho may have reached Class X.Our priority in getting the concessions was to ensure that children in the lower classes ultimately avail of the benefit, said Iyer.

The forum is in the process of petitioning the education department to extend the concessions to Classes I up to VIII.At present,only a handful of schools on their own initiative include autistic children and help them through the initial years.By the time the child comes to the board level,it is difficult for them to manage.But if the education authorities ensure that concessions are made at every level,it wont be difficult for the child in the later years, adds Iyer.

Dr Henal Shah,psychiatrist from Nair Hospital who is associated with the autism school operated by the civic administration as well as with the autism certification process,concurs that it will take a while before autistic children reach out for an SSC concession.We know a few children in some proactive schools who will sit for the SSC board exams in a couple of years, she said,adding that many parents do come to the Nair Hospital centre seeking certification for autism from other boards.

At a press conference held in February by parents after the state board announced the concessions,developmental paediatrician Dr Vibha Krishnamurthi had said that it was thoughtful of the board to consider specific characteristics of autism while giving concessions.For instance,considering that autistic children have a problem with changes or new schedules,the board had agreed to allow them to sit in their own schools while giving the exam.Some autistic children have motor issues that make it difficult for them to write well or quickly.So the provision for a computer is indeed a great move, Dr Krishnamurthi had then said.

Incidentally,FFA is also in dialogue with the SSC board for exemption from languages for SSC students with autism.

Early Signs Of ASD

No pointing by one year of age | No baby talk by one year | No single words by 16 months | no two-word phrases by 24 months | Any loss of language skills at any time | No pretend playing | Little interest in making friends | Extremely short attention span | No response when called by name| Little or no eye contact | Repetitive body movements,such as hand flapping or rocking | Intense tantrums | Fixations on a single object,like a spinning fan | Unusually strong resistance to change in routines | Over sensitivity to certain sounds,textures or smells | Difficulty reading or communicating through nonverbal social cues | No understanding that others may have thoughts or feelings different from his/her own | Obsessive focus on a narrow interest such as reciting train schedules

Even normal children may exhibit some of these behaviours from time to time

What Are Autism Spectrum Disorders

ASD causes severe impairment in thinking,feeling,language,and the ability to relate to others.No two kids with ASD have similar problems.If one has severe social interaction problems,the other may have low IQ,even mental retardation.These disorders range from a severe form called autistic disorder to Asperger Syndrome.

EDUCATION WITH A HEART

» To appear for the exams in their own schools

» The use of computers as well as calculators

» 20 minutes extra per hour of the exam

» To give oral answers in practicals exams

» A maximum of 20 marks as grace

» To choose lower level math and other subjects

Source- Times if India

April 2nd 2010 will mark the third annual celebration of WAAD-World Autism Awareness Day. We want to do our little bit to raise awareness about Autism -a Global Health Crisis. I would like everybody to go through UN Resolution on WAAD ..

On December 18, 2007, the United Nations General Assembly adopted resolution 62/139, tabled by the State of Qatar, which declares April 2 as World Autism Awareness Day (WAAD) in perpetuity. Her Highness Sheikha Mozah Bint Nasser Al-Missned, Consort of His Highness Sheikh Hamad Bin Khalifa Al-Thani, the Emir of the State of Qatar, supported the campaign for a World Autism Awareness Day through the current 62nd UN General Assembly Session, garnering consensus support from all United Nations Member States.

This UN resolution is one of only three official disease-specific United Nations Days and will bring the world's attention to autism, a pervasive disorder that affects tens of millions. The World Autism Awareness Day resolution encourages all Member States to take measures to raise awareness about autism throughout society and to encourage early diagnosis and early intervention. It further expresses deep concern at the prevalence and high rate of autism in children in all regions of the world and the consequent developmental challenges.

World Autism Awareness Day shines a bright light on autism as a growing global health crisis. WAAD activities help to increase and develop world knowledge of the autism epidemic and impart information regarding the importance of early diagnosis and early intervention. Additionally, WAAD celebrates the unique talents and skills of persons with autism and is a day when individuals with autism are warmly welcomed and embraced in community events around the globe.

By bringing together autism organizations all around the world, we will give a voice to the millions of individuals worldwide who are undiagnosed, misunderstood and looking for help. Please join us in our effort to inspire compassion, inclusion and hope.

Many children suffering from epilepsy get little sympathy from their teachers when they get seizures in school and are often told to quit school, a health expert has said while underlining the urgent need to educate schoolsabout epilepsy and how to help affected students.

"I get many children who have been told by their schools to stay at home 'till they are cured'. This just shows the complete lack of understanding people have about epilepsy in India and how to manage this treatable health condition," said Mamta Bhushan Singh, assistant professor in the department of neurology at the All India Institute of Medical Sciences (AIIMS).

"There is a pressing need to organise talks in schools about epilepsy in order to educate teachers about it. If schools begin to stigmatize students affected by epilepsy as someone abnormal, then it increases the problem. It becomes more difficult for the child to cope. We need educators and counsellors besides doctors to help because epilepsy is a treatable disease," Singh said on the sidelines of a talk on 'Epilepsy: Need for greater awareness' at the India International Centre here.

The doctor's comments came after the mother of a child suffering from epilepsy said that her son was told by teachers of his well-known south Delhi private school to "remain at home till he is cured".

"This just shows the lack of awareness and understanding people have about epilepsy," the doctor said.

Around 10 million people in India - 10 out of 1,000 people - have epilepsy, but most do not have access to proper treatment, especially in rural areas.

"The treatment gap, which means epilepsy patients not getting treatment or getting inadequate treatment, is huge - around 70-90 percent. This is a dismal state of affairs," said Singh.

"There is a stigma attached to epilepsy, which makes people tend to keep it under wraps. This is wrong and harmful for the patient," she said, adding that many people run to quacks for treatment instead of coming to hospitals.

"Nowadays there are very good drugs to treat epilepsy, and in case the drugs do not work surgery is also done in special cases, which has proved very beneficial," Singh said. AIIMS is one of the few hospitals in India where specialised surgery is done for epilepsy patients.

Asked if ayurveda is helpful in treating epilepsy patients, Singh recounted the case of a well-known "ayurveda" doctor in Haridwar who would put out huge advertisements in newspapers of how he could cure epilepsy with his "wonder herbal drug".

"We at AIIMS were worried because many of his patients began to report to us," she said. The quack was arrested and when his "herbal medicine" was examined at AIIMS they found it to contain a mixture of 3-4 known allopathic epilepsy medicines.

"He would crush the allopathic medicines into a paste and administer it to epilepsy patients, irrespective of their symptoms or severity. This was even more dangerous."

A major reason for children getting epilepsy is head injuries. Children fall off open roofs, which don't have ramparts, during play and hurt their heads, which results in scarring of the brain.

Babies born at home are at risk of getting epilepsy, she said. "The baby born at home could cry late and there would be no doctor to provide immediate treatment, this could lead to epilepsy. A difficulty in birth could also result in the baby developing epilepsy," Singh said.

Another major contributor to epilepsy cases is eating unwashed leafy greens. Green vegetables like cabbage and lettuce, which grow near the soil surface, could have tapeworm eggs. These eggs if ingested travel through the blood stream to the brain and cause epilepsy seizures.

Singh said eating leafy green vegetables served in hotels, especially those in sandwiches and in Chinese dishes, which are partially cooked, should be avoided.

These are causes for epilepsy that are "preventable", said the doctor.

Don't pin down a person getting an epilepsy attack, just make him/her lie down on one side and remove any sharp objects from near the person. Don't also try to put something in their mouth, she added.

Source - www.indiaedunews.net

New Delhi: Special children have special needs. So for the first time the Central Board of Secondary Education (CBSE) has designated educators to answer the queries of disabled students who are taking the crucial Class 10 and Class 12 board exams.

Four special educators figure in the list of 43 counsellors who will help students and parents overcome anxiety and stress during the board exams, which often prove nerve-wracking for students. This year the exams begin March 2.

"Realising the specific needs of specially-abled children taking the board exams for Class 10 and Class 12, for the first time we have included special educators to take care of them," Rama Sharma, CBSE public relations officer, told IANS.

Like all the counsellors, the special educators are available online as well as on telephone from centres located in Mumbai and Delhi from Feb 1 to April 2. However, most queries are expected to start coming in about 15 days before the exams begin.

"Parents and children with special needs can call the number and get all their problems and doubts related to board exams cleared," Sharma said.

M.R. Shipley, a special educator in Mumbai, said counselling specially-abled children requires a lot of patience and love.

"I empathise with them and try to step into their shoes to make them understand how to overcome problems during exams. I tell them nothing is wrong with them and try to boost their confidence so that the child is not under kind of pressure or demoralised," said Shipley.

She is a counsellor with the Apeejay chain of schools and a CBSE resource person for the Adolescent Education Programme.

The special educators are more polite while dealing with disabled children, they also try to talk to the parents and explain the facilities provided by the CBSE to such children.

The CBSE offers exemptions to physically challenged, spastic and dyslexic candidates taking the month-long board exams.

"Concessions to physically challenged and dyslexic students are in the form of extra time - they have 60 more minutes to write the exam, a writer in the board exam and flexibility in subject choice at secondary level," said Heetal Sayla, a CBSE special educator.

Sayla, who had worked with the Learning Disability clinic of the Lokmanya Tilak Municipal General Hospital, Mumbai, said: "For me, it will be a new experience as I am catering to the CBSE helpline for the first time.

"These kids should be looked up with love and patience and encouraged. I know many specially-abled students who perform quite well in their exams after counselling."

The CBSE has also given special training to teachers for marking criteria for such children in board exams.

Another counsellor, Abha Sharma, said specially-abled kids are really vocal and there is a need to understand their strong abilities.

"It is difficult to completely understand the children in tele-counselling. At times you need to talk to both the parents and children to make things easier for them," said Sharma.

The helplines are Abha Sharma, Mumbai, 9967800337, M.R Shipley, Mumbai, 9833950896, Hetal Sayla, Mumbai, 9819209623, and Shweta Khanna, Delhi, 9717882074.

The online address to get queries resolved is www.cbse.nic.in.

Last year, 1.31 million children appeared for the Class 10 and Class 12 board exams. Of them, students with special needs made up 0.17 percent.

(Richa Sharma can be contacted at richa.s@ians.in) (IANS)

Source - www.sanchar.in

At least 3,00,000 rehabilitation professionals wanted in India....... - Deepa Suryanarayan

India needs a whopping 3,00,000 rehabilitation professionals, including special educators, speech therapists, pathologists, audiologists, rehabilitation and clinical psychologists, physiotherapists, etc to meet the demands of the huge number of persons with disabilities in the country.

Yet, there are only 38,000 registered rehabilitation professionals in the country at present, according to the Rehabilitation Council of India (RCI), a Delhi-based regulatory body.

"As per the 2001 census, two per cent of the population, which works out to two crores, is disabled. There is a huge need for seven times more training professionals than what we currently have to meet demand," said SK Mishra, deputy director, RCI.

India needs 2,55,000 special educators for children with various disabilities, while the remaining requirement is for support specialists like physiotherapists, clinical psychologists, orthotists, etc. According to the Planning Commission's Institute of Applied Manpower Research (IAMR), India has 5,265 professionals for the hearing impaired while the requirement is for 58,000. "Likewise, there is a huge need for teachers for the visually impaired, speech impaired, mentally challenged, etc," pointed out Mishra.

There are 16 courses, including diploma and bachelors and masters degrees, standardised by the RCI, available in India. The situation of shortage is worsened with many of the professionals migrating abroad.

"While there are takers for the courses, many of them move abroad after completing their degrees," said Mishra, who addressed a meet of course coordinators for education of the hearing impaired in the city. "The idea is to encourage more people to take up these courses," he added.

http://epaper.dnaindia.com/epapermain.aspx

Often parentsof special children have reported that they always knew there was something wrong with their child. Even professionals believe that gut feelings or parental instincts are never to be ignored. So do not neglect your gut feelings and always act upon your instinct. Once you have any reason for doubt about your child's development depending upon the problem or condition, you should take your child for diagnosis, further treatment and management to:

1 Family Physician Initial / Preliminary Diagnosis
2 Pediatrician/ Developmental Pediatrician Preliminary Diagnosis Confirmation of Diagnosis
3 Neurologist Neurological defects like CP MR, Epilepsy, etc
4 Clinical Psychologist MR, Autism, Learning difficulty
5 ENT/Speech audio therapist Hearing impairment,CP
6 Eye surgeon Visual impairments, CP, Learning difficulty
7 Physiotherapist / Occupational therapist Orthopaedically Handicapped ,CP
8 Orthopedic surgeon CP, Orthopaedically handicapped
9 Remedial / resource /special educationist Learning difficulty, MR, CP
10 Psychiatrist Emotional/Behavioral problems
11 Counselors Emotional/Behavioural problems
12 School teachers Detection of scholastic problems and implementation of educational plan
13 Child Guidance Clinics Holistic management

Do not indulge in doctor shopping but see to it that your doubts are cleared and you give the best to your child!

The parents go through a spectrum of emotions once they realise that their child is different than the rest. Dr.Manoj Bhatawdekar, a leading Mumbai psychiatrist aptly describes the parental emotional state in a nutshell. He calls it as "GADBAD".-----Read More In read more-Know about GADBAD & be reassured that you are not the only one who feels these extreme emotions. Every special parent goes through GADBAD and how to overcome it.

What is GADBAD

Guilt - The parents feel guilty about giving birth to such a child. They think-'I must have done some mistake in the past, that's why my child has developed this disability".

Anxiety - They are constantly anxious. They worry about the future.

Denial - The parents do not accept the diagnosis. they feel it must be wrong.

Bargain - Parents try to bargain. e.g. can I stop the medication for my child or can I give medicine just once instead of twice/thrice?. Same happens with therapy sessions also.

Anger - The parent may express anger towards his/her child who has disability or towards spouse, family members, the doctor or entire medical system/society.

Depression - Parent expresses sadness, helplessness and negative attitude regarding the possible outcome of disability.

Parents who have overcome the GADBAD stage, recommend the magic mantra of Acceptance & vouch that this is the only way which will lead to the road of recovery.

Are you one of those parents who often get the feeling that your child is slow in learning language than others in their own age peers? Sure as parents most of us can assess some point of development activities. When the child took his first steps at the age of 12 months, we expect the child to produce their first words also. And when we found out that the child at the age of even 2 yrs., no language skill is enhanced, we are sure that the child would turn out to be a handicapped as if by some black magic power. Many parents might over blow the extent of their children's problems and it can complicate the further treatment/rehabilitation plans. Deafness is an invisible impairment, which makes the problem identification still more difficult to diagnose at an appropriate time i.e. before 2yrs. Critical period of language learning.

What is Hearing impaired?
Over the years the term has been given different definitions, but most are not accurate enough to cover the broad range of difficulties the hearing impaired individuals suffered. The word actually refers to those exceptional children who are atleast some degree of acquiring language skills is affected due to hearing defects. But though a hearing level of 70dB and above does indicate severe to profound problems, it doesn't always define the term. In general hearing impaired children are less vocabulary, and communication difficulties who are unable to envision multiple approaches to a problem and develop social isolation to deal with it.

To determine whether your child fits into this category, you have to look for certain characteristics such as response to loud/soft sounds, Imitation/repetition, motivation, curiosity, ability to communicate, use of signs and less attention span. Of course, some normal children do have at least one of those characteristics, but you can only assume they are hearing impaired if these traits are more intense than children their own age. If you happened to sing to your toddler a nursery rhyme sufficiently more nos. of time and no imitation respond is coming from your kid, then you definitely have reason to suspect he may be hearing impaired. Also the intellectual traits such as like mental problems could also hamper your judgment. Try to watch your child as he plays, whether alone or in group. Any suspicion from your observation warrants an immediate attention of ENT referral.
 

Early Detection
What most parents don't seem to realize is that they can tell whether a child is hearing impaired long before at the time of birth or at the later stage.

If your child doesn't birth cry, head/neck defect, and infections history or heredity problems, then child need assessment. But what do you do when you have a hunch that you are dealing with some sort of problems like hearing impairment? The first advice is don't ignore the fact. Do something about it. Help your child develop to his/her full potential to achieve as an self independent individual.

You need to make an arrangement for an array of neo-natal hearing testing services including sound screening test, free field test, conditioning, Electro galvanic response audiometry, crib-o-gram, play/visual reinforced audiometry, Oto acoustic emission (OAE), Auditory brain response (ABR), Impedance, Reflex decay etc. Then it is all up to the specialist's advice. If you don't do anything to nurture that advice, chances are your child will never be able to reach his full potential to learn language.

Contrary to old beliefs that a child's language learning abilities in hearing impaired child is nil. It has now been confirmed that nurture plays a significant role in rehabilitation of hearing impaired children. You can either kill those chances of acquiring language and make them sign language communicator of silent world, ensuring a life of frustration and depression (they know they are different, but cannot express themselves), or you as a parent can transform their capabilities to fruitful, help them develop their auditory skills, language vocabulary, speech stimulation and above of all to satisfy their curiosity and foster their analytical skills.

Sometimes, unintentionally of course, we as parents tend to suppress\certain potentialities in our hearing impaired children, presuming that they cannot hear it. We simply stopped talking to them. A hearing impaired child may pose a serious challenge to reach the goal of self dependency, we as parents must learn that hearing impairment doesn't mean mute it is rather man made. We have to identify the problems early and an immediate intervention must begin as early as possible.

Looking to the future
We have a real problem in our homes when parents are unable to detect and deal with hearing impairment, unfortunately many parent are negligent to do neither. I have strong advocacy of neonatal screening program for all High-risk register children (HRR). It is the only way we can help the early detection and intervention. They have a right, like all other children, to be rehabilitated and placed in a proper intervention centre. They also need to be able to communicate with peers of their same level of language skills.

We should be optimistic about the future in this area. Realizing the implications of such problems, one hope that our state Govt. will have some future planning for the early detection programme for such invisible problems. Therefore, the Manipur Govt. must start a project for the early identification of hearing impairment. RIMS can be a part of this project where medical facilities can be upgraded further with available manpower expertise. Money will have to be invested to ensure programs, which will detect and make use of hearing impaired individuals. All the district hospitals must also have a pilot team to run such a project.

But despite such dreams, the fact still remains that there isn't enough awareness of the importance of detecting and nurturing hearing impairment-and many parents and even Doctors are just not giving these hearing impaired children the environment needed to provide both the physical and psychological stimulation that they need.

TIPS FOR THE PARENTS

• Give them the same amount of both love and discipline you would to any child. Being hearing impaired doesn't mean they need sympathy.

• Create a stimulating learning environment in your home. Hearing impaired child need a lot of speech and language stimulation to acquire language skills. One suggestion is to hang up charts on different walls giving them the opportunity to explore and ask.

• Provide opportunities for question and story telling moments.

• Don't be disheartened with no answer or no repetition from your child. Keep continue stimulation. You need to be patient and to provide different clues for the stimulation is needed.

• Use your ability to dramatize the situation. All children love to hear story and hearing impaired child can get more fun and benefit from the creative /direct activities.

• Enjoy and respect your child's individuality, they can!

For the first time in the state, a government-run hospital has set up a treatment centre-cum-school for autistic children. The centre at Nair Hospital in Mumbai Central was opened on Tuesday.

For the first time in the state, a government-run hospital has set up a treatment centre-cum-school for autistic children. The centre at Nair Hospital in Mumbai Central was opened on Tuesday.

Hospital authorities stated the rationale behind such a centre was that most poor people mistake autism for mental retardation and send such children to mental asylums. While there are three-four private schools in the city for autistic children, their monthly fees are as high as Rs 25,000 per month, which the poor can ill-afford. Nair will offer similar care at a fraction of that cost.

Sensory integration room is like a playroom where kids will be under the supervision of a physiotherapist

"Autism is a brain development disorder that impairs social interaction and communication and causes restricted and repetitive behaviour, all starting before a child reaches three. Now, we will be able to admit autistic children," said Dr Alka Subramanayam, a senior doctor in the psychiatry department.

The hospital will start two batches with classes of three-hour duration each. While the first one will have children between 3-10 years of age, the second one will admit children between 11 and 16. The two batches will run from 9.30 am to 12.30 pm and 1 pm to 4 pm.

Paediatricians, occupational therapists, speech therapists and physiotherapists will be involved to treat a child and evaluate if he or she is indeed autistic. To begin with, five special educators aided by volunteers will teach the children.

The school has four rooms for teaching where students will be taught with the help of special educational equipment

There are nine rooms in the school, all of which have been designed to give the children a feel of different surroundings such as a kitchen, living room, office, etc.

The school will also allow parents to actually see how their children are being taught so that they can adopt similar methods at home. The number of students in each batch will be restricted to 10 so that each child receives individual attention. "We are delighted to have such a facility. Senior BMC officials were serious about the initiative. Parents need not spend hefty sums as the fees here are in the range of Rs 500-700," said Dr Sanjay Oak, the dean of Nair Hospital.

Some of the specially designed areas of the centre

Home room
This has a kitchen, refrigerator, dinning table and other home appliances and the children will be taught how to use them. Children will be trained in basic activities like how to use a stove and gas, how to drink, eat and sit at a table

Office room
In this room, children will learn the basics of computer and other simple things like putting a letter into an envelope, how to open it, how to use punching machines and other office accessories

Teaching rooms
This school has four rooms for teaching and each one can accommodate three-four students. Children will be taught with the help of special educational equipment. A one-to-one student-teacher ratio will be maintained

Sensory integration room
This is like a play-room, where focus will be on different physical activities under the supervision of a physiotherapist. Children will learn shapes of different objects. Through games, they will learn to recognise and feel grass, leaves, stones and rocks. They will basically develop neurological ability and maintain pressure and balance

Time-out room
Harried and anxious students can rest in this room, which will even have a water bed. There are two gunny bags where they can sit. The room also has a music system

Empty passage
Parents can sit and watch their children being taught. This is to enable them to learn the teaching method so that they can employ the same at home

http://www.mumbaimirror.com/net/mmpaper.aspx?page=article&sectid=2&contentid=2008082020080820023732997fd5a4ce&pageno=1

We know that Bollywood influences Mumbaikars as far as fashion trends and lifestyles go but Aamir Khan's Taare Zameen Par has gone a step ahead and has influenced a wide range of people in the city.

Impact on parents
Snehalata Desai, vice principal, School for Remedial Education, says, "Movies influence people and the stigma of Learning Disabilities (LD) has been erased by Taare Zameen Par (TZP). Awareness and acceptance about dyslexia has increased and parents are now more open to the possibility of their child having LD." Special educator Meenakshi Kalyanpur concurs, "TZP has surely had a positive impact on parents of children with dyslexia. During my practice at Arya Vidya Mandir School, informing the parents that the child has LD was an enormous task, but now they relate to the film and see their child in the protagonist, Darsheel. They realize that their dyslexic child can have other talents (like Darsheel's painting skills) and even allow the child to drop Maths/Science. The film has encouraged creative lines like art and people realize that IQ doesn't have to reflect only in academics. Now parents realize that stashing their child away at boarding school is not the solution for poor academic performance and that LD could be a cause."

Increased scope for special educators
So has the demand for special educators risen due to TZP? Tanya Alvares, special educator, a fresh recruit at Jamna Bai Narsee School, says, "Yes certainly-The future of special education is very bright. The movie has created more avenues for us, has raised the status and market value of special educators in the professional field as greater need for remediation is being felt in regular schools. Graduates see it as a viable job opportunity and many schools now have a resource room, i.e. a remedial room staffed by professionals trained in LD where an individualised education plan is prepared for the children who need it." Maharashtra education minister, Vasant Purke says, "Films are a form of literature and are an easy way to spread knowledge about issues like LD. My education officers have told me that now special education is being taken seriously in schools thanks to TZP, the impact of which is positive on the students."

Sensitisation of peers
Along with spreading awareness amongst parents and boosting competition amongst special educators, the movie has also sensitised peers of children with LD. Kate Currawala, president, Maharashtra Dyslexia Association says, "TZP is a well-researched film that has helped sensitise people who matter, like parents, teachers and mainly peers of students with LD. Now friends of dyslexic children understand the problem; there is less labeling and teasing."

The flipside
The impact of TZP is not all sweetness and light. Desai elucidates, "Unfortunately, TZP has romanticised and sensationalised dyslexia. Not all kids with LD are as talented as Darsheel was shown to be. The movie has painted an overly optimistic picture of LD." Kalyanpur adds, "I have come across parents who are too busy to devote time to their kids. After watching TZP, they attribute the poor grades of the child to LD, whereas actually the child needs time and attention from his parents!" Alvares explains, "While earlier children would hate being labeled as dyslexic, now one finds children hiding behind the disability only because they want to be like Darsheel." Award-winning writer and creative director of Taare Zameen Par, Amol Gupte says, "I do not consider dyslexia a 'disorder' and don't want to turn kids into 'patients' but inadvertently TZP has increased the trend of calling dyslexia a 'disability' and words like 'defect' have become more popular. The movie is about child care but sadly people have become more judgmental about kids who have language problems."

Students with Learning Disability (LD) will no longer have to travel from across the state to Mumbai for an LD certificate, which enable them to concessions during state board exams.

SSC board chairperson Vijaysheela Sardesai has scheduled a meeting with Maharashtra's director of medical education in mid-May to identify one LD centre in each region of the state that will be able to diagnose and certify children with LD.

Currently, the paediatrics department at Sion Hospital is the only one in Maharashtra authorised by the SSC board to certify children with LD. There are a number of concessions given by the SSC board to students with LD, which include extra time as well as a writer during exams. However, to avail of these concessions, children need an LD certificate from Sion Hospital.

From the coming academic year, Nair Hospital at Mumbai Central will also be authorised to certify students with LD. Last week, Sardesai was in the city to inspect the department of psychiatry at Nair Hospital.

Another civic hospital, KEM at Parel, is also in the process of setting up an LD clinic. "Our proposal to set up an LD clinic is still in the preliminary stages,'' says Shubhangi Parkar, head of the psychiatry department at KEM.

LD refers to a group of neurological disorders that affects a child's academic and functional skills like reading, writing and mathematics. Dyslexia, dysgraphia and dyscalculia are forms of LD. A student with dyslexia may mirror write letters and words and substitute letters like 'b' for 'd'. Students with LD usually have normal or above average intelligence. The recent Aamir Khan starrer, 'Taare Zameen Par', put the spotlight on LD.

Social psychiatrist Dr Harish Shetty, who has been at the forefront of the LD movement in India feels that it should be mandatory for every department of psychiatry in the state to set up a child guidance centre for LD. "It's the responsibility of the mental health fraternity to join hands with the government to support students with LD,'' says Shetty.

MUMBAI: Three weeks after Surendra Bende took St Mary's High School, Mulund, to court for failing his 12-year-old daughter Shreya for two straight years in Class V after not detecting that she had Learning Disability (LD), the school told the Bombay High Court on Friday that it has reassessed her performance and promoted her to Class VI. Shreya will also be given a fresh leaving certificate.

The high court accepted the school's decision and asked for the same to be put in writing.

Despite repeated circulars from the state education department over the past decade, as well as a recent HC order and a Government Resolution, which made it mandatory for schools to provide LD students with concessions—such as extra time for exams and a writer—the school not only denied Shreya these concessions, but did not even identify her disability. She had been failed on the grounds that she was weak at studies.

In a letter from the school to the education inspector for North Mumbai on September 5, the school said that the teachers had been unable to detect LD in the child, and the parents, too, had not informed the school of the disability. The principal had earlier told TOI that the girl had not displayed any "LD-type behaviour".

But advocate Sheetal Kumar, who filed the petition on behalf of the parents, said, "It is the responsibility of the school to detect LD in a child. This is not a new institution, but a reputed school that has been around for years. If the principal does not know what LD is, she should step down from her post."

Shreya's parents plan to take her out of St Mary's as they said the school does not have the requisite facilities, despite the HC order.

"It's sad that parents have to approach the courts to undo the criminal negligence of schools in not implementing an order.

The education inspectors are grossly inefficient in protecting the rights of children and fail to correct schools who violate the human rights of LD children," said psychiatrist Harish Shetty, who is at the forefront of the LD movement.

For the past two years, Shreya has been a stressed-out girl, overburdened with studies, with no time to play and no time for her favourite activities, which are singing and dancing.

Her parents had no idea why she was doing badly in studies despite all the hard work. Only after her tuition teacher suggested that she might suffer from LD was she examined for the disability.

Does the National Policy for Persons with Disability announced in February 2006 indicate a withdrawal of the State from its responsibility towards the disabled and a tendency to thrust that responsibility on civil society and communities?

Persons with disability (PWD) have been blocked out of our everyday reality, touching only those who are caregivers. Census 2001 says PWD constitute 2.13% of the total population, but conservative estimates place Indians with disability at between 5-6% of the total population. This translates to 6 crore people, including persons with visual, hearing, speech, locomotor and mental disabilities. Seventy-five per cent of people with disabilities live in rural areas, only 49% of this population is literate and only 34% employed. Women make up 42.46% of the total population of persons with disability. The Centre’s late recognition of the rights of PWD is depressing. The first legislation in this regard -- the Persons with Disability (Equal Opportunities, Protection of Rights and Full Participation) Act, which provides for education, employment, creation of a barrier-free environment, social security etc, was enacted as late as 1995. In the 10 years since, this too has met with very little success even in matters as basic as ensuring a barrier-free environment and generating employment. The National Policy for Persons with Disability, announced in February 2006, attempts to clarify the framework under which the state, civil society and private sector must operate in order to ensure a dignified life for persons with disability and support for their caregivers.

 The National Policy for Persons with Disability includes:

• Extending rehabilitation services to rural areas

• Increasing trained personnel to meet needs

• Emphasizing education and training

• Increasing employment opportunities

• Focusing on gender equality

• Improving access to public services

• Encouraging state governments to develop a comprehensive social security policy

• Ensuring equal opportunities in sports, recreation and cultural activities

• Increasing the role of civil society organisations as service-providers to persons with disability and their families.

The policy recognises the need to replace the earlier emphasis on medical rehabilitation with an emphasis on social rehabilitation. Community Based Rehabilitation (CBR) is seen as an effective means of rehabilitation, and the policy states that CBR will be encouraged. Like any policy statement, this one too outlines the direction that interventions for persons with disability must take. But there is no clear roadmap, or even list of priorities, on how this is to be implemented on the ground. A Ministry of Social Welfare official, who did not want to be named, said no national policy ever gives a timeline, as it only presents an approach to be followed under which programmes are drawn up, normally over a five-year period. State draft policies for PWD have so far only been drawn up by Gujarat and Jharkhand. The national policy will inform the disability plan to be incorporated in the 11th Five-Year Plan, which will have a timeline, and funds for programmes can be allocated through the Finance Commission. However, according to Javed Abidi, executive director, National Centre for Promotion of Employment of Disabled People (NCPEDP), the entire preparation process of the National Policy for Persons with Disability was a sham -- no significant attempts were made to circulate the draft among PWD and NGOs for their comments, in 2005. This was unlike the successful consultative process adopted prior to finalising the 1995 PWD Act.

Salient features of the policy
Addressing rural needs
The policy recognises that, at present, rehabilitation services are largely available in and around urban areas, with no coverage of a large majority of persons with disability in rural areas. Hence, it states that services run by professionals will be extended to cover uncovered and unserved areas. Further, new District Disability Rehabilitation Centres (DDRCs) will be set up with support from state governments. The availability of devices (prostheses and orthoses, tricycles, wheelchairs, surgical footwear and devices for everyday activities, learning equipment like Braille writing machines, dictaphones, CD players/tape recorders, low-vision aids, special mobility aids like canes for the blind, hearing aids, educational kits) will be expanded to cover uncovered and under-serviced areas.

Human resources
The policy addresses the lack of availability of trained manpower in rehabilitation, and states that human resource requirements for the rehabilitation of persons with disability will be assessed and development plans prepared so that rehabilitation strategies do not suffer lack of manpower.

Emphasis on inclusive education
With 51% of persons with disability being illiterate, the policy rightly emphasises inclusive education at the primary school level, and vocational training courses. Disability India’s website quotes ‘inclusion’ as an educational philosophy aimed at ‘normalising’ special services for which students qualify. Inclusion involves an attempt to provide more of these special services by providing additional aids and support inside the regular classroom, rather than by pulling students out for isolated instruction.

Inclusion involves the extension of general education curricula and goals to students receiving special services. Finally, inclusion involves shared responsibility, problem-solving and mutual support among all staff members who provide services to students (www.disabilityindia.org).

Importance of the service sector and self-employment
On reservation in government employment (3% in government undertakings and PSUs in identified posts), the policy states that the list of identified posts, notified in 2001, will be reviewed and updated. It also recognises the growing importance of the service sector and the potential for employment of persons with disability, for which incentives like tax exemptions and awards to the private sector will be considered.

Self-employment too has been emphasised since it is most often the avenue of choice for persons with disability. The existing system of providing soft loans through the National Handicapped and Finance Development Corporation will be improved to make it easily accessible, with transparent and efficient processing procedures. The government will also encourage self-employment by providing incentives, tax concessions, exemption from duties, preferential treatment for the procurement of goods and services by the government from the enterprises of persons with disability, etc. Priority in financial support will be given to self-help groups formed by persons with disability.

Emphasis on employment training for women with disability
With 93.01 lakh women with disability (42.46% of the total population of persons with disability), the policy states that programmes will be undertaken to rehabilitate abandoned women/girls with disability by encouraging their adoption in families, support for housing them and imparting training in gainful employment skills. The government will encourage projects where representation of women with disability is ensured at least to the extent of 25% of total beneficiaries.

Barrier-free environment
The policy also addresses one of the biggest obstacles persons with disability face in carrying on a normal life – an environment that prevents or hinders access to public spaces. It reiterates, as have previous notifications, that to the maximum extent possible, roads, highways, buildings/places/ transportation systems for public use should be made barrier-free.

Issue of disability certificates
The government has notified guidelines for the evaluation of disability; certification procedures will be simplified so that persons with disability are able to obtain disability certificates easily.

Social security -- tax relief and unemployment allowance
Given the additional expenses incurred by caregivers, the policy states that state governments will be encouraged to develop a comprehensive social security policy for PWD and their guardians. A system of regular review of tax relief policies granted to PWD will be put in place, and state governments will be encouraged to rationalise pension and unemployment allowances for PWD.

Sports, recreation and cultural activities
The policy recognises the importance of sports, recreation and cultural activities for PWD. It maintains that steps will be taken to ensure equal opportunities in this regard.

Promotion of non-governmental organisations
The policy stresses the importance of the NGO sector as a crucial institutional mechanism to provide affordable services to complement the efforts of the government. And the significant role NGOs have played in the provision of services for persons with disability. The policy states that interaction with NGOs will be enhanced on various disability issues regarding planning, policy formulation and implementation. Networking, exchange of information and sharing of good practices amongst NGOs will be encouraged and facilitated.

Collection of regular information on PWD and creation of a website
A comprehensive website for PWD will be created under the Ministry of Social Justice and Empowerment; public and private sector organisations will be encouraged to make their websites accessible to the visually-impaired.

Responsibility for implementation
The policy lays down a roadmap for implementation:

• The Ministry of Social Justice and Empowerment will be the nodal ministry coordinating all matters relating to policy implementation.

• An inter-ministerial body will be set up to coordinate matters relating to implementation of the national policy. All stakeholders, including prominent NGOs, disabled peoples’ organisations, advocacy groups and family associations of parents/guardians, experts and professionals will also be represented on this body.
  
  Similar arrangements will be encouraged at the state and districts levels. Panchayati raj institutions and urban local bodies will be associated with the functioning of District Disability Rehabilitation Centres’ district-level committees to coordinate matters relating to implementation of the policy. Incidentally, the role of panchayati raj institutions has been highlighted in implementing the policy, to address local-level issues and draw up suitable programmes.

• The ministries of home affairs, health and family welfare, rural development, urban development, youth affairs and sports, railways, science and technology, statistics and programme implementation, labour, panchayati raj, and the departments of elementary education and literacy, secondary and higher education, road transport and highways, public enterprises, revenue, women and child development, information technology and personnel and training will set up necessary mechanisms to implement the policy. Each ministry/department will evolve its own five-year perspective plan and annual plans setting targets and financial allocations. The annual reports of each ministry/department will indicate progress achieved during the year.

• The chief commissioner for disabilities at the central level, and state commissioners at the state level, shall play a key role in implementing the national policy, apart from their statutory responsibilities.

• Every five years, a comprehensive review will be carried out on implementation of the national policy. A document indicating status of implementation and a roadmap for five years will be prepared based on deliberations at a national convention. State governments and union territory administrations will be urged to take steps to draw up state policy and develop action plans.

Glaring insensitivity and inherent lacunae
A glaring example of insensitivity in the national policy is that the ‘Responsibility for Implementation' section states that infrastructure created during the course of implementation must be maintained and effectively used for a long period. The policy adds: “The community should take a leading role in generating resources within themselves or through mobilisation from private sector organisations to maintain the infrastructure and also to meet running costs. This step will not only reduce the burden on state resources but will also create a greater sense of responsibility among the community and private entrepreneurs.”

The meaning of “community” here includes public works departments, panchayati raj institutions and civil society organisations, a ministry official clarified. He added that it was not as though the government was withdrawing from its responsibilities, it was only trying to create a sense of ownership among the community. It would appear as if the state were absolving itself of its major duty and responsibility, placing the onus of generating resources on the community itself.

This is unfair. The Indian State and its people have a responsibility towards persons with disability that they cannot ignore. Further, the absence of accurate data on the actual number of PWD, the extent of their disability and their requirements is a huge constraint. Collection of information on persons with disability through the census began only with Census 2001. Though the policy states that the National Sample Survey Organisation will have to collect information on PWD at least once in five years, and differences in definitions adopted by the two agencies will be reconciled, the veracity of the actual data generated will have to be assessed.

The emphasis on self-employment too is almost an admission of failure in ensuring private and public sector employment, despite a 3% quota in the public sector (according to the PWD Act). The increased emphasis on self-employment poses the threat of further alienating PWD from mainstream society.

Finally, the biggest impediment in translating the national policy into achievable goals with a timeline is the plethora of ministries and departments; the nodal ministry itself seems more pre-occupied with issues related to scheduled castes and tribes.

What lies ahead…
As things stand, persons with disability encounter huge difficulties in interacting with government officials and making out applications. Although laws exist, they lack teeth. Very few organisations are penalised for not providing barrier-free environments. In fact, this basic requirement is seen more as a voluntary gesture -- if an organisation provides a ramp it's touted as a praiseworthy achievement. No one considers the fact that, according to the 1995 Persons with Disability Act, the provision is mandatory by law.

Besides, even government organisations have not managed to meet the 3% job reservations for persons with disability. Inclusive education too has largely been a failure: mainstream schools do not have facilities for children with disability thereby effectively excluding them from the first level of social interaction that would help towards developing a more sensitised and aware population.

In light of all this, it remains to be seen whether the National Policy for Persons with Disability 2006, that admittedly looks good on paper, will ever be effectively implemented on the ground. It is time for the Ministry of Social Justice and Empowerment to go full throttle and prepare a timeline for implementation of key deliverables, with departmental accountability. It's time now for some real action. The text of the national policy is available at socialjustice.nic.in.

(Deepanjali Bhas is communication and media officer, Svaraj [formerly Oxfam India] and has been a journalist with The Times of India)

InfoChange News & Features, August 2006