First Person: Experience of living in India's first 'Autism Guardians Village' in Hyderabad
AGV, world’s largest and the 1st of its kind autism friendly village, has been taking shape for over a decade on the outskirts of Hyderabad, writes Mona Rai who shifted there with her son a year ago
I had not imagined we would be living hundreds of miles away from our tony home in Noida, where Bhanu and I lived for years with Tanmay, our only child. Tanmay is tall, playful and occasionally piqued with life. He is 22 and ‘On the Spectrum’ (autism spectrum disorder).
But Bhanu is not with us anymore. However, even before death took him away before time, we had planned a home in Autism Guardians’ Village (AGV), the world’s largest and first of its kind home specially designed for those with autism, on the outskirts of Hyderabad.
The two of us, Tanmay and I, have now lived at AGV for a year and life has redefined itself. It has been an exceptional community living experience. It has reinforced our belief in the goodness of the world and its people. Tanmay has found new friends and new joys, I have discovered a renewed purpose of life.
AGV, the world’s largest and the 1st of its kind autism friendly village, has been taking shape for over a decade on the outskirts of Hyderabad. Spread over 20 acres, two independent yet complementary campuses--Autism Ashram, a residential living centre for autistic adults and children, and Autism Guardians’ Village (AGV), a residential community for families with autism.
The two campuses together ensure lifetime care for autistic children and adults – the single biggest concern which parents like me harbour, a deep fear about how our children will be cared for, after us.
Here, at AGV, the entire parent community have been caring guardians for Tanmay. If something ever happens to me, the Trust at AGV ensures that a caregiver moves into the cottage and Tanmay, who will require assistance in many ways like managing funds and the umpteen chores involved in running a home will be cared for.
I look at each one of my neighbours with deep gratitude. The ever smiling and extremely helpful Meenu aunty is a caring dadi who indulges Tanmay with homemade delicacies. He occasionally goes over to her place and demands his favourite dish. She has been inspiring me to make amla achaar. The freshly plucked amalas are from trees right behind our cottage.
Sonal and Vijay are doting grandparents to 10-year-old Swara, who resides at Autism Ashram and they have taken us under their wings. Helping us with any odd requirement, planning lunch outings or just taking us for a lovely drive in the rural hinterland, where we stop at a karela farm or a mango orchard and enjoy some homemade goodies carried along.
Then there’s Shaila, my buddy, who lives right across and is an artist, volunteering at the Ashram’s vocational centre, teaching sculpture and art to adults with autism. Saachi, her 15-year old talented and sporty daughter and Tanmay spend a lot of play time, outings and evening hang outs together and are slowly adapting to share their own space and time on the swing in the porch.
Each cottage here is inhabited with people and their stories. I listen intently to their personal journeys. We flock together to celebrate Ganesh Chaturthi, a festival, I had never before had the chance to celebrate. We both enjoy these five days of hectic celebrations. I am inspired to get a handmade Lord Ganesha home, made at the art and craft vocational unit at Ashram.
Tanmay is adjusting well to a stringent, predictable and regular schedule. He looks forward to the structured program around sports, music, art and vocational activities. His day starts with a morning assembly and a march past to drum beats, group music sessions where they sway to different instruments and there’s singing by the adults and the children. His favourite being beating the djembe drum, with a group of friends, all of them sitting under the green trees.
He and his friends are making handcrafted diyas, clay pendants, eco-friendly plates, torans, learning how to deftly manage a knife to chop vegetables and similar vocational and independent living activities, which serve as sensory therapy and is also enabling them to manage their daily chores. Some of his friends, who have now been trained to work with a job coach, have found engagement at the Ashram Convenience Store, at the Car wash unit and assist willingly in home delivery of goods within the community.
Tanmay’s 2-bedroom cottage (Tanmay Kunj) comes with a high-ceiling living room, where the glass and mesh windows bring-in a lot of fresh air and natural light, has a large kitchen with windows - where a modern-day chimney is redundant. The kitchen has been thoughtfully made with a door, which can be locked up, especially for those autistic kids and adults who are into compulsive and untimely binge eating.
For Tanmay, the most attractive part seems to be an open porch, where his jute-woven swing, gifted by Sanjay tauji serves as his me-time. He enjoys observing the coconut tree, firmly ensconced between the two lush neem trees, and he rushes to greet the familiar and the much-loving faces of his friends and guardians, as they walk past his cottage.
The way the cottage has been designed, it is getting clearer by the day that our children can be trained to spend their future years in their own cottage, with minimal support. Tanmay is visibly showing a deep sense of attachment to his own space and likes to arrange his room which has a workstation and all his favorite things. His wardrobes have been structured in a way that he can fold and stack his clothes and be completely independent with his choice of clothes and bathing.
The green environment and the sunny, pleasant weather, which is always so inviting – calls me out for a quick stroll and catch-up with the community. My mini garden is gradually taking form. I am sowing methi, mirchi, dhania in grow bags. Seeing them sprout its shoots, is my new morning ritual.
The culture of sharing and caring for each other has been nurtured by AGV’s founder Dr. A.K. Kundra and his wife Jyotshna.
Though this is not the life I had ever imagined, this new life is forming deeper roots, stronger branches and it seems all is well with the world again.
(This article was first published in National Herald on Sunday)