Her Specially-Abled Son Was Rejected by 42 Schools, Today This Mother Runs India’s First Group Home For Autism

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The first thing one notices while entering through the front door of Navprerna Foundation is a long dining table. At the head of the table sits Prakhar, slowly flipping through a drawing book filled with blotches of colour and lines. Once in a while, he looks up and starts whistling, while tugging at his earlobe.

Yaman, who looks not a day older than twenty, almost jumps up from the table and comes to greet as soon as the visitor is inside. With a huge grin radiant on his face, he extends his arm out to shake hands. But when the visitor reaches out, he instantly recoils and runs his hand through his hair with great suave.

No one has ever become poor by giving
– Anne Frank

“Yaman loves visitors,” shares Saswati Singh, the founder and president of the Navprerna Foundation and Prakhar’s mother. Her demeanour resembles that of a loving yet stern school principal. “He’s quite different from the others here,” Saswati continues about Yaman, “He is very outgoing. He loves being the centre of attention. He’s thirty-five now, (he has) been with me for fourteen years.”

Autism Manifests Differently In Each Individual

She goes on, “All of the people here look way younger than they really are. This is due to their innocence, along with the protocol of healthy food and exercise followed here. Our youngest friend here is eighteen years old – Bhavesh. He’s the newest admit, hardly been here for a month.”

She indicates to a frail boy sitting close to one corner, almost as if wanting to hide himself from the world. He wore a serious expression; his hands shifting from cleaning a little spot on the table on moment to running through his ears the next. As one gets closer to greet him, his first instinct is to move away.“He has a very strong sensory defensiveness. Both Yaman and Bhavesh live with autism, but it manifests itself in different ways in both,” Saswati explains.

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Bursting The Myths Start At Home

In public discourse, autism itself lays shrouded with misconceptions. Most view it as mental retardation which has no scope of improvement. Autism really is an umbrella term for a wide spectrum of different symptoms, each with its own set of implications. What’s common across the spectrum, however, is a difficulty to communicate and acquire social skills.

“Many parents initially think it’s a speech problem, which autism is not. They take their child to countless speech therapy sessions. A person with autism could learn all the words in the dictionary but they’ll find it very difficult to engage in a meaningful conversation,” Saswati tells me, while still managing to keep an eye on everyone in her class.

A noise from the bedroom door interrupts her. She rushes there with alacrity. “Prakhar is in a really bad phase right now. For almost three days every week, he can’t move around much because of his stomach issues,” she shares.

Prakhar lives with severe gastrointestinal issues along with autism. Persons with autism do tend to have more gastrointestinal issues than neurotypical people.

Years Of Struggle: The Traumas That Shook Her

Saswati’s personal life has had a sequence of events so terrifying that they would make most of us crawl up into a shell and never come out. At a tender age of seventeen, she lost her father to certain undue circumstances at their house in Calcutta. Saswati’s mother was never the same after that day, and her siblings had severe breakdowns as well. Mustering a superhuman courage, she became the pillar for her entire family and chose to move forward even in the face of the tragedy.

She went on to complete her higher education, specialising in microbiology. After stints at various schools in Calcutta as a biology teacher, she married a man from Haryana and conceived her first child. All seemed to be going well. With her uncle being one of the top gynaecologists in Kolkata, she was confident that all would be fine.

However, complications arose just a day before her delivery. At birth, the infant was separated from her and suffered from asphyxiation. In the first twenty-four hours of his life, Prakhar had suffered severe episodes of epilepsy for fifteen days.

He recovered from this and spent the next few years as a neurotypical child. He attended a regular school and developed speech, though he had hyperactivity. At the age of four, he contracted a high fever and was rushed to the hospital, suffering two massive attacks of epilepsy within a month. These episodes caused permanent damage to his brain, and he came back even having forgotten his name. Saswati was devastated. For the first few days, she cried inconsolably, blaming everything on herself. For any person, this would be where they gave up.

Quitting Job And Never Giving Up

But Saswati decided to accept the reality. She resigned from her job as a senior biology teacher in a prestigious Delhi school and vowed to give her son everything he would need to lead the happiest life. She went around different schools with Prakhar, but 42 of them rejected him outright due to his hyperactive nature and severe behavioural issues.

When Saswati became a mother to her daughter Prerna, Prakhar was thrown out of his the then school. The untoward incident only strengthened her resolve to take up the responsibility of Prakhar and many others like him. She started her own special school in her third floor flat in West Delhi by the name of Prerna Special School on 1st July 1995.

For three years, Saswati struggled to maintain the school in the confines of her apartment with the school having a huge waiting list. Then she approached Kiran Bedi, the then Special Secretary to Lieutenant Governor of Delhi. Bedi allotted a space for the organisation at the Community Centre in Tilaknagar.

The Navprerna Foundation – More Than Just Another Special School

The school works with a wide range of intellectual disabilities in low income and low awareness environments (free of charge for those who can’t afford), often engaging college students for sensitisation. Saswati focuses on empowering the mothers to take responsibility and action.

“The mother is the primary caregiver for the child. We can only do so much with special schooling, real change can only occur when the mothers take charge. Consistency is only ensured when what is done in school is reaffirmed in the house,” she emphasises.

At the time of initial admission, mothers were asked to come twice a week to train and help with the school’s functioning. Those who attended regularly were offered a job at the centre, which became an incentive for others. Within a few years, the centre became self-operated by these mothers. Saswati continued working in this area, but soon questions about the future started bothering her. She realised that there is more to autism than just special schooling. Thoughts about how Prakhar would survive on his own concerned her.

Saswati Singh’s Trip To USA That Opened Her Eyes

Around this time, she was selected by Maneka Gandhi (former Minister for Women & Child Development) to visit various welfare organisations in Japan. There, she saw 90-year-old mothers managing these organisations. Soon after, she went to Washington DC to represent 13 countries of Asia-Pacific for Special Olympics – being one of the few mothers who was a trained coach for the Global Family Support Network. Now with a one year visa, she decided to attend the Son-Rise Startup program at Option Institute, Massachusetts.

On the very first day of the program, she was surprised to learn that taking care of food through a Gluten Free Casein Free (GFCF) diet is very important in Autism.

People with Autism tend to process the peptides present in high sized proteins such as gluten and casein in a different and incomplete way, resulting in aggravation of seizures, gastrointestinal issues, and behavioural problems. “Since he/she can’t communicate as we do, they express discomfort in their bodies through these manifestations,” explains Saswati.

Independent Living For Autistic Youngsters

Charged with newfound hope and enthusiasm, she decided to start a new project when Prakhar turned 17. She focussed on creating a unique group for him since she’d seen him respond better in groups with role models. This would be the first group home for autism in India, and it started in 2005 in Dehradun as Inspiration Centre – Dehradun. The focus of this group home was to provide a holistic approach towards autism – utilising both behavioural therapy and the GFCF diet – with an end goal of independent livelihood for these youngsters.

Atkarsh, a three-year-old boy, came to Saswati with acute behavioural issues. He was constantly hitting his mother and found it difficult to control his aggression. Within a week of starting the GFCF diet, he calmed down enough to say his first full sentence.

For every new person at Navprerna Foundation, Saswati insists on an exclusive blood profile and allergy tests, along with stool and urine test to rule out parasites and pathogens in their body. “The stomach is the brain of the midbody. Any disturbance down there can result in disturbance up here,” she says, gesturing towards the brain.

“Parents Should Guide Them To Survive The Society In Their Absence”

But the diet is only half of what she does here. The other important aspect of autism therapy is behaviour modification for social skills.

“People with autism fail to understand social and contextual cues. This leads to behaviour which is not age-appropriate,” she reveals, adding, “The worst thing to do when one sees such behaviour is to let them be. Tomorrow when their parents are no more, they need to know how to behave in society and take care of themselves.”

Vocational training is another focus here. Saswati breaks every task into sub-tasks, taught in phases. Once she was dealing with a boy who refused to wear clothes. “What do you do when he rips the clothes you make him wear?” Saswati asked the mother. “I get him new ones,” she replied, “What else can I do?”

Saswati advised the mother to make him sew his clothes whenever he ripped them. Once the child realises that difficult behaviour won’t work, they stop. The boy was then able to step out wearing clothes, and even visited Saswati in Dehradun.

“You need to be firm and consistent. Never say anything to the child which you won’t do. They should know that you mean whatever you say.”

Every instruction Saswati gives ends in a low inflection, which is key. It means that what is being said has to be done. Saswati and her team at Navprerna Foundation follow these protocols diligently.

The Lives That Changed

At present, no known cure for autism exists. The best we can do is to manage the symptoms, ensure that the person is comfortable, and try to integrate them into mainstream society.

If intervention is done at an early stage, children with autism can even enter mainstream institutions. For instance, Atkarsh now studies at one of the most prestigious schools in Dehradun. The school hasn’t been told he has autism. For those who have grown up without effective intervention early on, both the GFCF diet and behavioural therapy can still play a huge role.

As part of the group home training, people are taught money concepts, taken for trips out to markets, and have good knowledge of chores and etiquette. They wash their own utensils, cut their own vegetables, wash and iron their own clothes, make their beds. Yaman even cooks the afternoon dal for everyone.

He used to throw a lot of tantrums, so much so that he was never invited to any events. Now, for the first time in years, he attended a party with his mother. He loves taking care of children and is one of the few people who understands sarcasm. His dance moves are to die for.

Abhishek, a twenty-four-year-old from Lucknow, is a master of all trades. He can do chores faster than anyone and is proficient in data entry and money skills. Bhavesh has been with Saswati for only a month and he’s already gone from scared and serious to laughing and enjoying activities like painting. Ayan, who used to throw away all his meals and obsessed over ripping strands of his hair, now loves solving his puzzles and eats all his meals properly.

 A Testament To One Woman’s Fierce Determination

In addition to a self-sustaining community home, Navprerna Foundation now plans a business venture called ‘Café-Canopy’ to create an inclusive workspace for these people and promote GFCF recipes. This venture is managed by Saswati’s daughter Prerna, who has now joined the foundation. The mother-daughter duo is the foundation’s HR team, marketing team, social media managing team, business heads, and chefs – all in one. With a Master’s degree in social work, Prerna helps create a far-reaching network of volunteers and generates interest for the cause.

Surrounded by supportive neighbours and lush green trees opposite Lovely Market, the group home is proof that meaningful change can be made in the lives of even the most challenging cases of autism. Countless lives have changed and continue to change in Dehradun and in Delhi, all credits to Saswati Singh. The centre stands today as a testament to one woman’s fierce determination in the face of every adversity life threw her way.

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A Group Of Karnataka Women Pushes Alcoholic, Abusive Husbands & Social Stigma Aside, Earns Through Recycling Workshop

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At thirteen, Neela was married off to a husband much older than her. At sixteen, she became a mother, and at nineteen, she was a widow. Despite having no regular income, she was faced with the daunting task of taking care of her in-laws, her own parents and of course, her little daughter. For young Neela, life has never known a trajectory where her voice is heard and her destiny is not blamed. That was until she came under the ambit of Hosa Belaku Artisan’s Foundation and discovered a new identity for herself. The taste of financial independence was indeed delightful for her, but her zeal to work hard for a newer, better life stood at the helm of it all.

No one has ever become poor by giving – Anne Frank

Founded by Kameshwari from Bengaluru, the foundation works with distressed women in three Karnataka villages, helping them to earn their livelihood by handcrafting a wide range of decorative or daily-use household items. Like Neela, nineteen women with struggles similar or worse, have found a new lease of life at Hosa Belaku Artisan’s Foundation. Every piece of item created at Hosa Belaku is recycled from leftover fabrics, paper, dry waste or scrap metals.

Hosa Belaku – a new dawn

“I have been working in the social sector for the past two decades. Since 2013, I got associated with Belaku Trust, who was working with rural women in Karnataka,” shares Kameshwari, a former legal executive. 

“Most of these women were victims of alcohol abuse and harassment on the domestic front. Some were widowed, single mothers or differently-abled – making life all the more hard for them in a patriarchal society. Unfortunately, circumstances led Belaku Trust to close their operations in 2015. The women were left in a lurch,” she narrates.

Some of these women desperately pleaded with Kameshwari to let them sustain their only source of income and independence. Moved by their plight, Kameshwari resolved to do her best to help as many women as possible. Investing a sizeable proportion of her own savings, she launched the Hosa Belaku Artisan’s Foundation in 2017.

At present, the foundation has active workshops in three villages in the suburbs of Bengaluru, namely, Halasuru, Achalu and Kadahalli. 

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The gritty women of Hosa Belaku

At the prime of her life, Pavithra’s husband left her for another woman. Heartbroken and devastated, she was clueless about how to earn her living. The story is similar for many other women in these villagers, with careless, abusive or estranged husbands, most being alcohol addicts. The pangs of poverty would sometimes become more unbearable than the constant physical abuse by their husbands. Yet, they had no way to have some respite from the ordeal. Few women did work seasonally as agricultural labourers. The backbreaking toil in the sun would take a toll on their health, while the deplorable situation at their homes would haunt them for the rest of the year.

Empower Poor Women To Rise Out Of Poverty

Kameshwari mortgaged her jewelery for Rs 6 lakh to start Hosa Belaku Artisian's Foundation. Most of the women employed in this foundation face domestic violence in their homes. Kindly donate here : bit.ly/hosabelaku

Posted by Efforts For Good on Sunday, July 21, 2019

Society, with its primitive doctrines, only made it worse for these women. For instance, nobody was willing to marry Shivlingi because she had a facial deformity. After a point, her own brothers abandoned her as if she had become a liability.

If one visits these women now, they would be found basking in their newfound success with Hosa Belaku. But, not only the women, Hosa Belaku’s workforce comprises a 19-year-old young man as well. All his life, Yogi, who is affected by Polio, had accompanied his mother everywhere. She used to work with the foundation until she recently passed away in an accident. Yogi’s father is visually-challenged, so the entire family received a major emotional and financial setback after his mother’s sudden demise. A helpless Yogi would painstakingly drag himself from door to door in search of work. “We took him in and trained him in toy-making. Now you would find him in a corner, making beautiful toys for children,” shares a proud Kameshwari.

Sunshine, Lamp and Dawn – Illuminating lives

The women groups at the three villages are designated with three unique names and assigned with a unique task each. Kirana (Sunshine), the group at Kadahalli is involved with paper products, making notepads, bags and jewellery.

The Halsuru group Deepa (Lamp) has adopted the art of block printing. Vibrant, stylish and beautiful handbags, cushion covers, stoles and notebooks are curated with the utmost care and precision by the women.

At Ushe (Dawn), needle and thread rules. Women who were already skilled in sewing and embroidery now earn by making stuffed toys, patchwork products and embroidered fabrics.

True to their names, the groups have indeed brought new light into the lives of their employees.

Suma and Jayamma are both senior workers at Kirana who have succeeded in constructing small concrete houses for themselves, a huge step up from the dilapidated huts they spent their youth in. Another aged lady in the same group has another compelling achievement to be proud of. Bearing the taunts and trauma from her drunkard husband all her life, she has single-handedly raised a son and a daughter with proper education. Her son, who is currently an aspiring engineer, was supported with a laptop from Hosa Belaku. Honamma, a young widow from the group Deepa is treading a similar path, raising her son all on her own.

The only solace

How much gratitude these women have towards Hosa Belaku is perhaps evident from Shri’s unwavering dedication. Diabetes is taking a toll on her eyesight yet she refuses to give up and continues etching her grit on the ornate block-printed fabrics.

The reason for such gratitude is manifold. For the conscious urban consumers, Hosa Belaku is striving to save the environment with their 100%-recycled policy. But, for the workers, it is the lifeline which not only offers them economic security but also allows them a place to voice, share and resolve the problems plaguing their lives.

“They come here and find a peaceful break from their household obligations. Some still face domestic violence regularly, the workshop is an escape for them. They discuss their issues and try to find feasible solutions. It takes the load off their tired minds. The work here is a breath of fresh air for them,” Kameshwari asserts.

“We have been assisted time and again by established non-profits and retail chains across Bengaluru, who have graciously showcased and marketed products made by our artisans. We would like more people to know about Hosa Belaku and its incredible women, and respect their brilliant spirit by purchasing their crafts,” Kameshwari expresses her wish.

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It's not how much we give
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