A Haven- Happy and Heavenly!
By Anjana Tripathy
Remember SRK’s character in the movie ‘My Name is Khan’? Remember how he showed oddities in his behaviour, with lack of eye contact and constant repetition of some words or phrases? Well, Mr. Khan was suffering from a complex neurobehavioral disorder known as ‘Autism’.
Ask Gargi Bhattacharya, about autism and she smiles ruefully as she embarks upon an emotionalyet- gritty journey about how life dealt her with two ugly blows and how she fought back with utmost resolve and determination, resulting in an endeavour known as the ‘Zain Foundation Trust’, a residential setup for autistic individuals. It was not at all easy for this couple, Gargi and her husband, Zeeshan Ali. They lost their elder son Zain who was suffering from a rare kind of brain cancer and their younger son Rean who was diagnosed with autism. Two years ago, on the eve of their late son’s 16th birthday, they decided to do something constructive rather than mourning over the loss. The couple invested all that they had and decided to start the ‘Zain Foundation Trust’ which will work dedicatedly for the autistic individuals in Odisha. They have already procured three acres of land in Khurda, where they plan to start a residential set-up for the autistic children and adults. The Trust was started with two objectives in mind – One was to keep Zain’s name alive through the Foundation and the other was to do something for Rean which would benefit others like Rean. In Gargi’s own words, “The Foundation will be like a gift from Zain, my elder one, to not only his younger brother Rean but also to everyone else with autism.”
This Foundation stemmed from the primary thought , ‘What will happen to the autistic child or adult after his or her parents are gone’? Gargi and Zeeshan depended a lot on Zain being there for his autistic brother Rean, after they were gone but unfortunately fate did not allow that to happen. This is the chief concern of the parents with autistic children and this is where The Zain Foundation Trust brings in a glimmer of hope and positivity. Apart from this fundamental concern, Gargi and her Foundation seeks to address other significant issues like proper diagnosis of autism, something that she says is getting more and more difficult with each passing day. There needs to be a proper brain study, a proper biological profile, a proper physiological profile and then a decision on the diagnosis and the therapy required, accordingly. Apart from this, many sensitive issues like the kind of dignified funeral or burial a family would like their loved one to have once they cease to live are getting addressed, as well.
Gargi’s ambitious project of establishing an Autism Care Centre, the first of its kind in Odisha, proposes to have a health care centre, sports and physical activity infrastructure, farming and water purifying system, cognitive and vocational units and specialists from the state and outside, to assist numerous autistic persons of the state to cope with the menace. The dedicated residential setup promises to have cutting edge equipment and infrastructure, best doctors on call, well-trained therapists, adept nurses and most importantly, competent care-givers in the ratio of 1:2, as per international standards so that every kid receives proper care and attention. According to Gargi, no single care-giver can take care of an autistic person throughout the day. Gargi is very clear that the care-givers she is scouting for have to have the right spirit and positive energy rather than just impressive credentials. She also voices out the need for strict surveillance of the residential premises, in order to rule out sexual abuse. The establishment will also open its door to the underprivileged, poverty-ridden strata of autistics that perhaps can’t pay a penny but yet gets access to the world class facilities present there. Zain Foundation Trust has already completed two years of inception and is eagerly waiting for another year to go by, after which the Trust will be eligible for the Foreign Currency Registration Act (FCRA), and come into being.Gargi has set her heart on ensuring that the Haven should be a Happy and Heavenly one!
Gargi’s initiative of constructing a residential Autism Care Centre has received mixed responses so far. While there does exist a small segment which is speculative about the Foundation and its work, and regards it as competition which threatens to take away its clientele, the community of parents of children with autistism, denizens who understand Gargi’s mission and members of her social circle have rallied around her with immense support, goodwill and love and are keen to pitch in for her in whatever capacity they can.
She feels that while Bhubaneswar is a relatively small city its people have hearts of gold. Quite a few well-known faces like critically acclaimed actor Naseeruddin Shah, actor-politician Siddhant Mohapat r a and al s o corporates have extended their whole-hearted patronage to this noble cause. Since Zain was a diehard fan of iconic actor Salman Khan and Hollywood hunk Arnold Schwarzenegger, Gargi plans to get these two public figures to get involved with this project. Salman Khan happened to send a video to Zain emboldening him with the words, “You had cancer when you were a little boy, you fought it, you will fight it again.”
Throughout the last two years the Zain Foundation Trust has organised several fundraising activities like innumerable workshops about issues related to special children, presentations in schools in rural areas of Odisha, bike rallies and events to mark World Autism Day on 2nd April, every year.
Gargi Bhattacharya, the recipient of the esteemed Aarya Award for her contribution in the field of social work, feels she is not worth it so soon and that she would have actually deserved it, possibly, five years from now. She considers the Award as a token of motivation to take her efforts forward in an improved manner and bring them to fruition.
Gargi fondly reminisces Zain as an innocent, gentle but deep child who was a committed foodie and always game for fun and merriment! Her word of advice to the parents of autistic children is to be cautious about their own health and fitness so that they can offer quality care to their child for a longer period of time, be very watchful of the changes in their child as they grow up, take them for repeated diagnosis, know exactly what they are dealing with, accept the child as it is, offer unconditional love and never to socially alienate their special child. Gargi terms Autism as a Spectrum Disorder and says that the child could be anywhere in the spectrum! In her own words “if one life can be utilised for the betterment of so many others, it’s worth it.” ‘Coffee Bytes’ salutes the indomitable spirit and unselfish dedication of this adorable couple and urges it’s readers to come forward and offer their wholehearted support to the Zain Foundation Trust!
This is the piece of Earth on which ‘The Zain Foundation Trust’ will be built. Here is the place where individuals with special needs will live happily. Here is where the story of a brave boy will be written. Here, the Universe will aspire to come close to perfection and celebrate, life like we have never known before.