An Inspirational story of Hydrocephalic Survivor

"I changed from a guy who hoped he was dead one day to a guy who wanted to live every moment of his life as if he had never lived before. By the time I left college, I had a set of friends who were as close to me as family and I was a person, who completely believed in himself. One thing I learnt from all this, it was never the way others looked at me that changed, it was the way I looked at the world that made all the difference"

Says Tavish Chadha. He suffered from Hydrocephalic problem at the age of two months and has been operated seven times for his hydrocephalic problem, But that is all past, now he leads a very normal life in the corporate world and is a active blogger too.

He is happy to share his success story with the parents who have children suffering from the same disease.

1985 to 1989 – Early childhood

3rd July 1985, a new member was added into the Chadha family. We were a joint family back then. I wasn’t the first grandson born in the family, but as far I know, I was the most pampered. 2 months into this world and I developed a problem called Hydrocephalous. As soon as it was confirmed that something was wrong, we quickly drove down from Chandigarh to Delhi. Delhi at that time was simmering thanks to the anti-Sikh riots. Dad tells me that he stood at the gates of AIIMS holding me in his arms and the guard wouldn’t allow him inside accusing him of being a terrorist. After he pleaded and begged him, we were allowed in, but only till the kitchen and that’s where my check up was done. Anyways, the problem was soon diagnosed and I was rushed to the operation theatre. After the operation, the doctor came and told my dad that there are high chances that I may be a mentally retard and the best he could hope for is that I have an IQ of 80. After this dad went and visited ever single gurudwara in Punjab and asked god for just one thing, “Just make sure my son gets to study.” Contrary to all expectations, I turned out to be quite a bright little kid. At the age of three, I could actually talk to people about every tennis player of those times. At an age when kids couldn’t pronounce Czechoslovakia, I could tell people what the capital of that country was. My dad tells me this story every time I curse life or god. He just says, “If it wasn’t for that god, you wouldn’t have been what you are today. Out of all the people on this planet, you can’t afford be a non-believer. ” If it wasn’t for this incident, I would have never believed in the concept of god at all. I still don’t believe in the concept of multiple religions, but I do believe that there is a divine power up there who is running the whole show on this planet. Anyways, I had a couple of surgeries in Delhi in the next couple of years and then five more in Hyderabad, where we shifted after dad got a job in Asian Paints.

1989 to 1996 – growing up years phase 1

We moved to Hyderabad in early 1989. After staying in a rented house for two months, we moved into a flat given to us by the company. The society in which we moved into, had people from all over the country. I was a very touchy kid who was always over protected by my parents. To top it all, I was a complete tube light (although, some would say I still am). This proved to be a very dangerous combination. This made me very vulnerable and the other kids would find it very easy to manipulate me. I always found it difficult to learn when others taught me something, but would end up learning that very same thing all by myself in no time. My dad toiled unsuccessfully for over a month to teach me how to ride a bicycle and how to skate, but finally lost all hope one day. From the middle of nowhere, I started riding the bicycle and started skating all by myself. The problem wasn’t that I had a problem with his teaching; it was just that I couldn’t follow a standard step by step procedure of learning something. Even today, I find it difficult to follow a standard procedure in doing something. If I find a better way of doing something, I’ll go for it regardless of what people have to say. I am not sure if that’s a good thing or not, but it’s just the way I am.

1996-2003 – growing up years phase 2

I shifted from an all boys school to a co-education school. I had hardly any interaction with girls before this, except for my childhood friend, who I always treated like another guy. Now, here I was, all of a sudden found myself surrounded by aliens. My sister had a heart problem and my parents had to start concentrating on her and with the result I had to take complete control of my life. This proved a little too much for me and everything started falling apart. I soon started to lag behind in my academics, fellow students and teachers started to look down on me and as a result I had no friends. Things went from bad to worse over the next two years. My teachers used to humiliate me and beat me up every single day. I soon went into a state of depression and developed an inferiority complex. I lost all the confidence that I had and began to hope everyday that, that day was my last. Then one day, somewhere in the year 2000, when things had become way too much for me to handle, I went back home and burst out crying in front of my mother and I told her everything that was actually going on with me. Since then mom and dad helped me get out of my mess slowly and steadily. By the time I had passed my 10 th grade, the kid who had stopped seeing more than 50% on his mark-sheet, passed out in first division and by the time I passed out of my twelfth I could actually boast of a percentage in the eighties. It took a few more years to come out of my inferiority complex and depression. Those years weren’t easy, but today, as I look back, those days are an asset. Whenever am low or the chips are down, I just close my eyes for a few minutes and recollect those memories and say to myself, “if I could get through those days, I can get through anything.” People who have known about this feel sorry for me, but I kind of feel proud that all that happened. You may find it strange, but I kind of feel gifted.

2004-2007 – College life

My dad always wanted me to be an engineer but left the decision on me. However, one of my dad’s friends advised him not to make me take up engineering because he felt I wouldn’t be able to cope with it. Instead, he felt I should be doing a course like arts. My dad just replied saying “it’s completely up to him. I am not going to force him into anything.” But that very day I sub-consciously decided that I am going to be an engineer and show this guy that I CAN. So here I was, in March 2004, admitted into one of the best Engineering Collge in Hyderabad. My inferiority complex hadn’t completely gone away from me. The next three years passed by pretty fine. Not too many friends but I was leading a decent life. The turning point for me came in my final year, when I got through Accenture. It was no great interview that required me to know rocket science, but, it was the first time I had achieved something all by myself. Things changed all of a sudden, I was full of confidence and could now start looking at people eye to eye. Even my class mates were shocked on seeing the new me. I was a changed person. I changed from a guy who couldn’t speak to anybody to a guy who proposed a girl in front of a hundred people knowing she wouldn’t accept it because she like someone else. I changed from a guy who hoped he was dead one day to a guy who wanted to live every moment of his life as if he had never lived before. By the time I left college, I had a set of friends who were as close to me as family and I was a person, who completely believed in himself. One thing I learnt from all this, it was never the way others looked at me that changed, it was the way I looked at the world that made all the difference.

2007 to present – Life in the corporate world.

Although I had done my electrical engineering, I was always fond of software. I could sit for hours and code something. Joining Accenture was a dream come true. I entered this organization with a picture in my head, where all I would be doing is coding software, something I loved doing. However, I soon realized corporate world had many more dynamics attached to it. The past three years have gone from excitement of finally getting to earn your own money to frustration on seeing no future in what I was doing to realization that however pathetic things are, in the end of the day you have to face them. The question I had to ask myself again was, “are things that bad or is it the way I am looking at them?” The answer didn’t really surprise me. The minute I changed my perception about things, things at work changed automatically.

So that’s how my life has been for the past twenty five years. I won’t say it’s been a great life, neither will I say it’s been a bad life. It’s just been a journey of crests and troughs and with each crest and each trough, I have grown as a person.

Special Education Careers

Opportunities are growing in the field of special education
By Jerry Webster

The career field of Special Education is made up of more than teachers, though they make up the largest group of professionals. Special Education professionals provide a whole range of services and support to children with disabilities, from mobility, feeding and hand over hand support to physical therapy. Preparation for these jobs can be on the job training for high school graduates to specific certification programs that require Master's or Doctoral degrees.

Job opportunities in special education:

Therapeutic Support Staff: Not all people who work directly with special education need to have a degree or certification in the field. Support staff, who work as "wrap arounds" or classroom aides, work directly with children but are not required to have college degrees or certification in special education. Some college can be helpful, and because support staff do not "take their work home"--ie. plan or write reports, it is often rewarding work with little stress. Some training may be required, but the district, school or agency who employs you will provide it.

The responsibilities of the classroom aides revolve around that single student. That child may have been identified as needing "wrap around" support because of emotional, behavioral or physical needs that require individual attention. They will see that the student stays on task, and that besides supporting the student in participating appropriately in class, they also sees that the student does not disrupt the educational progress of other students. They are often provided in order to help a student stay in their neighborhood school in a general education classroom.

Classroom Aides: Most school districts provide "para-professionals" who assist special education teachers by providing instructional support to individuals or small groups of students. Hired by school districts, they may require some college education. School district will hire classroom aides to assist special education teachers, occupation therapists or in full inclusion classrooms to provide support to students with disabilities. Classroom aides may be expected to provide toileting, hygiene or hand over hand support to children with more severe disabilities. Learning support children need less direct support: they need help completing assignments, checking homework, playing drill games, or working on spelling assignments.

Special Education Teachers: Teachers are required to have at least a special education degree from a college or university. Some states provide alternate routes to certification through post baccalaureate Masters Degree programs. Some states require Masters degrees. Another requirement since passage of the latest reauthorization of the Individuals with Disabilities Education Act is that teachers are "Highly Qualified" which requires certification in another curricular field
Occupational Therapists provide services to children and adults with disabilities, or who have suffered from brain injury, stroke, severe injury or any other injury or life event that takes away a person's ability to perform everyday tasks. They help disabled individuals acquire skills they need to cope with everyday life or find employment. They teach dressing, feeding, shoe tying and help build fine motor skills needed for handwriting, typing and other tasks needed for school. In educational settings they also help with the sensory needs of children with autistic spectrum disorders.

Occupational therapists also support students and teachers with adaptive technologies, such as adapted spoons, weighted vests (for sensory integration.) adapted pencils, computer keyboards, and on and on.


Speech Pathologists/Therapists: Speech-language pathologists or speech therapists work with special education students to assess, diagnose and treat disorders related to speech, language, cognitive communication and fluency. Many years ago, speech therapists focused on speech articulation problems such as lisps, stuttering and difficulty with r's and t's. Speech-language pathologists now focus on language disorders that effect a child's academic and life-skill functioning. They focus on pragmatics (understanding language as communication,) receptive language, augmented communication, fluency and language production. As well as working specifically with children with language difficulties, they also work with children with developmental delays and other cognitive disabilities who have difficulty producing language, understanding language or communicating.

Physical Therapists: Physical therapists (PTs) help patients, including accident victims and individuals with disabling conditions such as low-back pain, arthritis, heart disease, fractures, head injuries, and cerebral palsy, by providing services that restore function, improve mobility, relieve pain, and prevent or limit permanent physical disabilities. They restore, maintain, and promote overall fitness and health. PT's also provide support for children with physical disabilities to help them with ambulation (walking or getting around in a wheel chair) and the other physical requirements of daily living.

Source :http://specialed.about.com/od/specialedcareers/a/careerspreparation.htm

A reliable 'Downs Syndrome' worker

This is the true story of a mongol sent to me and it touched my heart: .....

I try not to be biased, but I had my doubts about hiring Stevie. His placement counselor assured me that he would be a good, reliable busboy.

But I had never had a mentally handicapped employee and wasn't sure I wanted one. I wasn't sure how my customers would react to Stevie.

He was short, a little dumpy with the smooth facial features and thick-tongued speech of Downs Syndrome. I wasn't worried about most of my trucker customers because truckers don't generally care who buses tables as long as the meatloaf platter is good and the pies are homemade.

The four-wheeler drivers were the ones who concerned me; the mouthy college kids traveling to school; the yuppie snobs who secretly polish their silverware with their napkins for fear of catching some dreaded 'truck stop germ' the pairs of white-shirted business men on expense accounts who think
every truck stop waitress wants to be flirted with. I knew those people would be uncomfortable around Stevie so I closely watched him for the first few weeks.

I shouldn't have worried. After the first week, Stevie had my staff wrapped around his stubby little finger, and within a month my truck regulars had adopted him as their official truck stop mascot.

After that, I really didn't care what the rest of the customers thought of him. He was like a 21-year-old kid in blue jeans and Nikes, eager to laugh and eager to please, but fierce in his attention to his duties. Every salt and pepper shaker was exactly in its place, not a bread crumb or coffee spill was visible when Stevie got done with the table. Our only problem was persuading him to wait to clean a table until after the customers were finished. He would hover in the background, shifting his weight from one foot to the other, scanning the dining room until a table was empty. Then he would scurry to the empty table and carefully bus dishes and glasses onto his cart and meticulously wipe the table up with a practiced flourish of his rag. If he thought a customer was watching, his brow would pucker with added concentration. He took pride in doing his job exactly right, and you had to love how hard he tried to please each and every person he met.

Over time, we learned that he lived with his mother, a widow who was disabled after repeated surgeries for cancer. They lived on their Social Security benefits in public housing two miles from the truck stop. Their social worker, who stopped to check on him every so often, admitted they had fallen between the cracks. Money was tight, and what I paid him was probably the difference between them being able to live together and Stevie being sent to a group home. That's why the restaurant was a gloomy place that morning last August, the first morning in three years that Stevie missed
work.

He was at the Mayo Clinic in Rochester getting a new valve or something put in his heart. His social worker said that people with Downs Syndrome often have heart problems at an early age so this wasn't unexpected, and there was a good chance he would come through the surgery in good shape and be back at work in a few months.

A ripple of excitement ran through the staff later that morning when word came that he was out of surgery, in recovery, and doing fine.

Frannie, the head waitress, let out a war hoop and did a little dance in the aisle when she heard the good news.

Marvin Ringers, one of our regular trucker customers, stared at the sight of this 50-year-old grandmother of four doing a victory shimmy beside his table

Frannie blushed, smoothed her apron and shot Marvin a withering look.

He grinned. 'OK, Frannie, what was that all about?' he asked.

'We just got word that Stevie is out of surgery and going to be okay.'

'I was wondering where he was. I had a new joke to tell him. What was the surgery about?'

Frannie quickly told Marvin and the other two drivers sitting at his booth about Stevie's surgery, then sighed: ' Yeah, I'm glad he is going to be OK,'she said. 'But I don't know how he and his Mom are going to handle all the bills. From what I hear, they're barely getting by as it is.'Marvin nodded thoughtfully, and Frannie hurried off to wait on the rest of her tables. Since I hadn't had time to round up a busboy to replace Stevie and really didn't want to replace him, the girls were busing their own tables that day until we decided what to do.

After the morning rush, Frannie walked into my office. She had a couple of paper napkins in her hand and a funny look on her face.

'What's up?' I asked.

'I didn't get that table where Marvin and his friends were sitting cleared off after they left, and Pete and Tony were sitting there when I got back to clean it off,' she said. 'This was folded and tucked under a coffee cup'

She handed the napkin to me, and three $20 bills fell onto my desk when I opened it. On the outside, in big, bold letters, was printed 'Something For Stevie.'

'Pete asked me what that was all about,' she said, 'so I told him about Stevie and his Mom and everything , and Pete looked at Tony and Tony looked at Pete, and they ended up giving me this.' She handed me another paper napkin that had 'Something For Stevie' scrawled on its outside. Two $50
bills were tucked within its folds. Frannie looked at me with wet, shiny eyes, shook her head and said simply: 'truckers.'

That was three months ago. Today is Thanksgiving, the first day Stevie is supposed to be back to work.

His placement worker said he's been counting the days until the doctor said he could work, and it didn't matter at all that it was a holiday. He called 10 times in the past week, making sure we knew he was coming, fearful that we had forgotten him or that his job was in jeopardy. I arranged to have his mother bring him to work. I then met them in the parking lot and invited them both to celebrate his day back.

Stevie was thinner and paler, but couldn't stop grinning as he pushed through the doors and headed for the back room where his apron and busing cart were waiting.

'Hold up there, Stevie, not so fast,' I said. I took him and his mother by their arms. 'Work can wait for a minute. To celebrate your coming back, breakfast for you and your mother is on me!' I led them toward a large corner booth at the rear of the room.

I could feel and hear the rest of the staff following behind as we marched through the dining room. Glancing over my shoulder, I saw booth after booth of grinning truckers empty and join the procession. We stopped in front of the big table. Its surface was covered with coffee cups, saucers and dinner plates, all sitting slightly crooked on dozens of folded paper n napkins. 'First thing you have to do, Stevie, is clean up this mess,' I said. I tried to sound stern.

Stevie looked at me, and then at his mother, then pulled out one of the napkins. It had 'Something for Stevie' printed on the outside. As he picked it up, two $10 bills fell onto the table.

Stevie stared at the money, then at all the napkins peeking from beneath the tableware, each with his name printed or scrawled on it. I turned to his mother. 'There's more than $10,000 in cash and checks on that table, all from truckers and trucking companies that heard about your problems. 'Happy
Thanksgiving. '

Well, it got real noisy about that time, with everybody hollering and shouting, and there were a few tears, as well.

But you know what's funny? While everybody else was busy shaking hands and hugging each other, Stevie, with a big smile on his face, was busy clearing all the cups and dishes from the table.

Best worker I ever hired.

Hydrocephalus

Cerebrospinal fluid(CSF) a clear liquid which is very similar to the liquid portion of blood(plasma) and contains various salts and products such as sodium, calcium, bicarbonate, chloride, magnesium and glucose.The purpose of the Cerebrospinal Fluid (CSF) is as a medium for the transport of the chemicals to and from the brain, and also to provide buoyancy and protection for the brain. When there is excessive accumulation of cerebrospinal fluid (CSF) within the ventricles of the brain, there is a neurological disorder called Hydrocephalus.

Neha is 24 year old hydrocephalic patient. She can be recognized with her enlarged head. Neha is very hyperactive and is most of the time tied to a chair. She has tendency to be destructive and will fling objects randomly if left unsupervised. She is not able to perform any activities because of her poor eye-hand coordination but she does not like to sit alone. She likes to come to school everyday and sit in the company of other children, watching them play, smiling at times. On the days, when there is holiday, she is very hyperactive and restless at home and insists that she needs to go to school, many times displaying temper tantrums.

Normally, in infancy (usually before 3 years of age) in the case of Hydrocephalus, the head size grows too rapidly and the head becomes too large. The baby's soft spot at the top of the head may be full or tense, and the veins distended.

There are a number of causes of hydrocephalus; these are either developmental or genetic. Genes are not passed from generation to generation unchanged. They go through a process called meiosis when they divide to form gametes; this process mixes the genetic material between the genes. Genes can also be changed by external forces; some substances can cause alterations of the genes, as can radiation. These genetic changes can lead to developmental changes, which were not passed from their parents. Most cases of genetically caused hydrocephalus lead to several malformations, one, or more, of these will affect the nervous system.

In Hydrocephalic adults whom the skull bones have fused, the head size usually doesn't grow abnormally. The increased intracranial pressure can cause headaches, irritability, sleepiness, nausea or vomiting, visual problems, neck pain, seizures (rarely), or a change in behavior, personality or school performance. An inability to concentrate or remember things may also develop. Lethargy, drowsiness, balance problems, and double vision are common symptoms.


Detail information on Hydrocephalus, causes, treatment, history and surgical procedures can be found here

Need for Residential Home for Mentally Challenged in Mumbai City.

It is of deep concern for parents of mentally challenged to provide care for their children, specially when their children are adults and they are not there to take care of them. In the present scenario, the living is quite expensive, and it is becoming increasingly difficult to take care of their handicap-siblings. It would be of great help if some residential facilities could be made available to ease their living. Swami Brahmanand Pratishthan, centre for mentally challenged are willing to take up the project of building a residential home as soon as they are able to overcome the obstacles of collecting the funds.

Need for the project:

A need is felt at present for a spacious building which will accommodate more number of adult mentally challenged persons and for providing residential facilities with other support services.

At our present premises we are able to house only 50 adults that too without providing residential facilities which is a dire need of the Parents of Children with special needs. Such services are lacking in our area

We have successfully managed our projects in spite of various financial hurdles with the support of our parents, community and professionals.

We are hopeful of fulfilling the dream of providing and improving the quality of life to persons and their families with special needs.

Back Ground:

Mentally challenged children have little integration into our present society. Small initiatives for these children include, day schools specially catering to the challenged, when young, and in their school going years. But, as they grow older little opportunities remain in our society for any concrete measures for rehabilitation. The Trust is presently running a Vocational Training Unit (Falguni Vocational Centre) at Swami Brahmanand Pratishthan, Sector 8A, CBD.
The vocational center caters to persons with special needs who attend the Centre irrespective of their age. These mentally challenged adults find solace in coming to the center for special programs designed towards their rehabilitation into society.

Vision: (Goal)

An integrated family approach for rehabilitation of the mentally challenged adults in society using an enabling environment, advocacy, and rights based approach towards educational, social, financial, vocational and economic empowerment for those mentally challenged and their families under the umbrella of Swami Bramanand Prathistahan Society.

Mission: (Objectives)

1. Rehabilitation; for the mentally challenged, using an extended family approach. (Even after death of immediate parents and guardians)

2. Social, economic and vocational empowerment for those affected families.

3. Capacity building; for the mentally challenged to lead a normal integrated life in society.

4. Enabling environment through reduction of stigma and discrimination, early interventions, rights based approach and essential advocacy with the stake holders and gate keepers of society to include Government, Non government and private agencies.

Brief detailed Project report about the proposed project in Navi Mumbai.
Point 12 a/b: How the area of plot and admissible FSI will be utilized:
Major Activities and utilization of the land acquired by the society would be the following:

Residential Facilities for adult mentally challenged

• Sheltered Workshop

At the residential Unit there will be separate accommodation for male as well as female. Besides common facilities of Dining, Recreation and Health will be provided. The Residential staff will be provided with the required facilities.

At the Sheltered Workshop the inmates along with the non residential adult mentally- Challenged will be kept engaged in activities such as

• Handicraft
• Home science
• Grinding
• Stitching & embroidery
• Pottery
• Job Work on orders received
• Any Other job available at the Centre

This will also help them in becoming economically independent to some extent.

This facility will be made available to the adult mentally challenged above the age of 21. It will also benefit the general public as jobs will be made available at the Centre. The items produced at the centre would be sold to the public. People wanting to spend their free time can offer their voluntary services.

The inmates will be charged for the services on the cost incurred. A Subsidy will be given to deserving inmates. Expenses will also be met by way of donations, sponsorship etc

Financial Projections – capital and recurring cost.

The approximate cost on the Project would be as follows


PARTICULARS COST
Purchase of land – Rs. 40,00,000/- approx.
Other Expenses on acquisition - Rs. 5,00,000/-
Cost on Construction - Rs. 2,00,00,000/-
Furniture & equipments - Rs. 10,00,000/-
Miscellaneous -Rs. 5,00,000/-

Recurring cost on salaries, maintenance and other activities approximately amount to Rs. 12,00,000/- per annum.

The Trust and the Parent’s Association will raise funds for the plot while the cost on construction will be by way of funding agency.

Human resources to manage the project

Human Resources

Professionals will be appointed to take care of both the units and the parents will be actively involved in the supervision of the project.

The Falguni Vocational Centre presently has staff as follows
1 Vocational Coordinator
1 Vocational Instructor
1 Special Educator cum Craft Teacher
2 Class Assistant
3 Attendants

The recurring cost incurred on salaries and other expenses amount to Rs. 4,50,000/- annually.

History:

The Trust started its first Centre in the Shahabaz Village on 7th July 1990 with three students identified during the Survey. The classes were conducted in the Shahabaz vyam Mandir. This premise was allotted to the Trust on the recommendation of Sri. Ramesh Kumar the Social Welfare Officer of CIDCO. In spite of financial constraints the Trust was allotted a plot by CIDCO. Today Swami Brahmanand Pratishthan has a well equipped set up for the mentally challenged children in Navi Mumbai.

The Trust also started its second centre in the year 2000 at Uran. At present the activities are carried out at rental premises and catering to 30 mentally challenged children and a few young adults. This is the only Centre in the entire area of Uran. We also have plans to develop this centre in to a full fledged unit catering to the needs of the mentally challenged children/ adults and their families.

Achievements:

Our Institution and our students have won various awards and prizes. To mention a few in the year 1993 our student Mst. Sujit Phadnis represented India in the International Special Olympics held at Salzburg, Austria and won a gold medal for the country.

Ms. Disha Maru was the youngest participant in the National Music and dance festival held at Hyderabad organized by National Institute of the Mentally Handicapped (Ministry of Social Justice and Empowerment). She is also a National Swimmer and was selected as a standby for the Aquatic Event (Swimming) in the World Games 2003 organized by International Special Olympics to be held in Dublin, Ireland.

Ms. Lakshmi Shetty is also a National Table Tennis gold medalist and was selected to represent India as a standby in the World Summer Games in the International special Olympics to be held at Shanghai, China in the year 2007.

The School has won the Mayors Trophy in the sports organized by NMMC for special Children for three consecutive years. It has also received the Special Jury Award from Jawaharlal Nehru Port Trust in the year 2008 for a cultural program presented by the students.

The School has also received Seva Bhushan Puraskar for the services rendered in Navi Mumbai by the Congress Seva Dal of Navi Mumbai. Many students have excelled in sports, drawing, dance and music at district, state and National Level.

The Principal Mrs. Sukanya Venkataraman was awarded the ‘Adarsh Shikshak Puraskar’ by Thane Jilla Parishad, Thane.

The Founder Mrs. Shirish Poojary has also many awards and felicitations to her credit. To name a few the Vocational excellence award by Rotary Club of New Bombay Hillside given twice and Excellence Professional award on the occasion of the International women’s Day at the hands of Smt. Manda Mhatre.

The Organization it is able to provide quality education, training and all essential services to the Special children and their families of Navi Mumbai. This has been possible on account of the blessings of P.P. Swami Brahmanand along with the support and cooperation it has been receiving from the parents, well wishers and Community at large.

A plot measuring 881.20 square meters at Aaroli (Navi Mumbai) is available for residential home, if only……..

Using Behavioral Approaches in Autism (And on Anyone)

by Shannon Des Roches Rosa (Guest Post, Thank you- Shannon)


Behavioral methods are usually associated with autism and early intervention, or orca training.

But guess what? You can use them to change the behavior of almost anyone: your children, your partner, your co-workers, even icky blog or Twitter trolls.

I am a huge fan of behavioral methods because they have helped my son gain so many skills, but I also confess that I use the methods to mold behaviors whenever I can.

Let me tell you how you can play puppeteer, too.

All you have to do is ignore undesired behavior, and instead seek out, role model, and reinforce desired behavior. If your subject doesn't respond, then analyze their motivations, and appeal to those motivations instead using reinforcers (okay, bribes) if necessary, which you can taper off once the behavior becomes routine.

That's pretty much it. I know.

Behavioral methods are straightforward, but they're not instinctive unless you're the kind of naturally empathetic and kind person I tend to avoid because you make me feel like a jerk.

And implementing behavioral approaches systematically and consistently, especially in parenting, takes more effort than asking children to talk about what they were feeling when they hit their brother over the head with a lunchbox (though understanding that motivation is important, too).

It takes a lot more analysis and upfront effort to be proactively positive instead of impulsively negative, but the results are generally worth it because you're not reacting and reprimanding, you're planning and conditioning -- and conditioning sticks.

Behavioral methods aren't foolproof, but they usually work. Here are some examples:

• Instead of yelling at a kid who picks her nose, hand her a tissue, and tell her how proud you are when she blows her nose instead of excavating. Actively watch for opportunities to catch her doing the right thing, and praise her with gusto when it happens. If this approach doesn't work, up the ante with a sticker or other reward chart. If you still can't find any motivation strong enough to stop the nose-picking, then you need to decide if it's a critical battle, or if you should change your focus to "I'm proud of you when you don't pick your nose in public," and start reinforcing that behavior instead.

• Instead of chastising a co-worker who takes the last cup of coffee and leaves the carafe empty, ask them if they wouldn't mind refilling it, and be emphatic but not patronizing in thanking them when they do so. Repeat repeat repeat. (You might want to wait until after they've had their first sip of coffee.)

Behavioral methods form the cornerstone of ABA therapy, which is one of the most commonly used approaches to help children with autism and other special needs learn. it is a 1:1 -- one child, one therapist instructor -- intensive, data- and evidence- driven educational program for addressing a child's learning deficits. Whether it takes place at home, at school, or across both places, all the learning is tracked, and the resulting data scored and analyzed to see what kind of progress the child is making.

Many autistic children have difficulty learning from their environment or in traditional educational settings, because there are so many assumptions involved in each lesson.

How can a child learn to write the letter A if they don't understand how to hold a crayon, that you need to hold the paper with the other hand, or even that you're supposed to remain seated? These kids need their learning broken down into small steps, and bolstered by repetition. This is what ABA therapy does.

It is not the only way to help our kids with autism and other special needs learn, and it doesn't don't work for all kids with autism because there is no one type of kid with autism, just as there is no one type of gifted child or one type of Deaf child.

But ABA is worth trying, to see if your child responds. ABA therapy methods taught my son Leo to dress himself, play with other kids, ask for help, and occupy himself independently. He simply did not respond to other ways of learning when he was little.

Some critics protest that ABA therapy is too rigid, too intense, and uses aversives or negative consequences to shape behavior. While these practices were used in the early days of researchers like Ivar Lovaas, an ideal modern ABA program is customized for each child's skills sets and learning needs, and is flexible not only in what it teaches but in where the teaching takes place.

There should be no forty hours per week of sitting at a table doing boring drills. There should be no punishments, only praise and reinforcements. ABA therapy, like most credible learning systems, continues to evolve through evidence regarding best practices.

ABA therapy is also frequently downplayed by a media that prefers to sensationalize autism "cures" achieved through dietary supplements or questionable medical protocols or Martian rocks, but I guarantee you: most "cured" or "recovered" children, including Jenny McCarthy's, Karyn Seroussi's, and Age of Autism's had ABA therapy as well, and likely made much of their progress in that environment.

Many of Rethink Autism's learning tips are simple but not necessarily something I'd come up with on my own, an example being color-outlining the inside edges of separate color areas to encourage children to use more than one color per picture

Using a one-inch-thick boundary around the coloring area, and then gradually increasing the size and complexity of the white space while reducing the thickness of the outline. Coloring inside the lines is an ongoing challenge for Leo, but the Rethink Autism approach seems to be helping so far:

We are currently in a situation that is testing our and Leo's long-time ABA program supervisor Emma's behavioral chops: Leo has decided that he would prefer not to have a little sister. My son may have many challenges, but his memory is tremendous, and he remembers his years as Mommy's baby quite clearly. He has tolerated his sister for almost five years, and now feels it's time for the usurper to go. He has spent the last few months trying to hit, pushing, and terrorize her non-stop.

My husband and I have been trying to ignore Leo's behavior (when safe to do so), or keep the two of them separated and supervised. But Supervisor Emma pointed out that this is not a long-term approach; we are not addressing Leo's motivation, which is to make his sister miserable enough to leave. So we need to take his motivation away. We need to create as many safe positive interactions between Leo and his sister as possible, so that Leo starts to like his little sister, sees that there many benefits to having her around, and stops trying to remove her from the picture.
Cross your fingers for us; if Emma's approach works, it'll be one more victory for behavioral techniques.

Source: http://www.blogher.com/using-behavioral-approaches-autism-and-anyone

Microcephaly ~ Devang Chavan

When I went to his class, he was cleaning coriander leaves, slowly and carefully, observing each leaf as he cut off the edges and placed the leaves aside with the bunch of other leaves.



Devang Chavan is ten year old shy kid, who is very active and independent in all his personal skills. He can read and write simple text, good in functional mathematics and can perform simple task independently. He helps his mom at home by running few errands like buying grocery from a store, or helping at home.

He suffers from Microcephaly, which is a medical condition in which the circumference of the head is smaller than normal because the brain has not developed properly or has stopped growing.

Microcephaly can be present at birth or it may develop in the first few years of life. It is most often caused by genetic abnormalities that interfere with the growth of the cerebral cortex during the early months of fetal development. It is associated with Down’s syndrome, chromosomal syndromes, and neurometabolic syndromes.

Babies may also be born with microcephaly if, during pregnancy, their mother abused drugs or alcohol, became infected with German measles, or chicken pox virus, was exposed to certain toxic chemicals, or had untreated phenylketonuria (PKU).

Babies born with microcephaly will have a smaller than normal head that will fail to grow as they progress through infancy. Depending on the severity of the accompanying syndrome, children with microcephaly may have mental retardation, delayed motor functions and speech, facial distortions, dwarfism or short stature, hyperactivity, seizures, difficulties with coordination and balance, and other brain or neurological abnormalities. Some children with microcephaly will have normal intelligence and a head that will grow bigger, but they will track below the normal growth curves for head circumference.

Devang was five years old when he was admitted to Swami Brahamanand School, centre for Mentally challenged. He was very restless and hyperactive. His speech was limited to few words. He had the history of prolong illness and had to be hospitalized several times for diarrhea, respiratory track infection and convulsions. His development milestones were delayed from birth.



Over the period of six years, he has shown marked improvement in behavior and is quite obedient and well mannered. He is shy and does not interact freely in the company of strangers. He takes active part in sports and extra curriculum activities and is being trained in pre-vocational skills.

Children, like Devang, will only have mild disability, especially if they are otherwise growing and developing normally, will have normal intelligence and continue to develop and meet regular age-appropriate milestones.

There is no treatment for microcephaly that can return a child’s head to a normal size or shape. Treatment focuses on ways to decrease the impact of the associated deformities and neurological disabilities. Children with microcephaly and developmental delays are usually evaluated by a pediatric neurologist and followed by a medical management team.

Early childhood intervention programs that involve physical, speech, and occupational therapists help to maximize abilities and minimize dysfunction. Medications are often used to control seizures, hyperactivity, and neuromuscular symptoms. Genetic counseling may help families understand the risk for microcephaly in subsequent pregnancies.

However, ‘The National Institute of Neurological Disorders and Stroke’ (NINDS) conducts research relating to microcephaly in its laboratories at the National Institutes of Health (NIH) and supports additional research through grants to major medical institutions across the country. A small group of researchers studying a rare neurometabolic syndrome (3-PGDH), which causes microcephaly, have successfully used amino acid replacement therapy to reduce and prevent seizures.


Source: http://www.ninds.nih.gov/