by https://taleportmagazine.com/author/ruchikajain/
“I was not trained with a special training to be a mother of an autistic child. But I learnt.” Mrs. Ruby Singh was just as unaware about Autism as most of us still are. She still calls it the worst period, when she and her husband had no clue about what was going on with their first born son, who was much later diagnosed with Autism, an intellectual disability which affects the way how one processes information, interacts or behaves. It is still one of the most prevalent and yet least understood mental disorders in the world.
Not only the lack of facilities, but also the deficiency in medical awareness caused their son to miss out on the special training and medical attention required in his early age. It is most crucial and beneficial for an autistic child in the first six years of his/her growth, which is when the brain develops.
One of the most haunting worries for Mrs. Singh is the question of the well-being of her son after she and her husband would be no more. With help from family, friends and even a few strangers, by 2008, she bought a small piece of land for a residential campus for intellectually handicapped adults, and by 2009 she started a trust in the name of ALFAA, or the Assisted Living for Autistic Adults.
Mrs. Singh remarks that she is, “not a corporate. I am just a mother, driven by the attachment to my child. It’s like a life insurance policy. I’m building a dream.” And ever since, it has been a difficult, but a determined journey.
Autistic individuals have less attention span, are hyperactive, sensitive to certain stimuli and need supervision constantly. Sadly however, there is no prominent or specialized course for trainers, as it is a general belief that not many graduates would be willing to choose being a care giver as a profession. Keeping this dire need of care givers in mind, ALFAA has derived a plan to construct the residential campus for Autistic individuals near a village. Trained and compassionate individuals from nearby places may be given permanent employment as care givers, generating a healthy symbiotic relation within the center. However there is no government support yet for such a training program.
Another way of improving the life of Autistic individuals, ALFAA believes, is by generating prospects of employability for them, so that they may not be seen as a liability.
From day care cum training workshops to Fashion Shows, ALFAA has been creating new and innovative ways to empower and encourage adults with ASD. At the fashion show held in June 2013, called ‘Foresight’,Prasad Bidapa, a renowned Fashion designer offered one of the participants an opportunity to model for him! The participant was one of the eight Autistic
Mrs. Singh believes that, “It would be remarkably good if corporate and media persons would come forward and choose these kids and adults to model for them, in still photograph ads of their enterprise or products.” It would indeed be much better and helpful for these Autistic Adults as an employability option, rather than making paper bags or peeling and weighing peanuts and earning negligible amounts per month. “And such ads will definitely grab the attention of public, much more than an ad with a celebrity in it would. Why shouldn’t we also give these children a chip of opportunity to earn something for themselves?” appeals Mrs. Singh.
Society doesn’t always know the difference between the different types of mental disorders. Nor do they try to learn. For them, anyone behaving differently is stereotypically ‘mental’. “
Activities at ALFAA
This sheds a light on the treatment and attitude the Autistic adults face at the hands of society. “It’s all a jumbled up ball of wool.” This is how Mrs. Singh summed up all the troubles she has faced, and which still persist like tangled knots. It is not as much a fight against the general indifference towards the mental disorder, as it is against the complications that our government and society create when a good initiative like ALFAA tries to make a difference.
Issues like unsympathetic attitude of public and authorities, lack of facilities and aids, overrated taxes, and dozen complicated and unfriendly formalities; only add on to the trauma of an already battered parent, who is only trying to do some good, and make our country a better place to live for autistic adults. What really must be their state, what would they be facing on the ground level at the hands of the apathetic government and society, one shudders to even imagine.
A non- profit organization which only wishes to help as many people as possible, has to go through more, if not the same amount of formalities and hurdles to function, as does a multinational company. Why isn’t there a one window solution for NGOs which deal with such difficult and serious disorders like Autism, where special care and training at every stage in a child’s growth may be crucial in determining his/her cognitive, communicative and productive abilities all throughout his/her life? Why is there no compassion on the part of our political, social and legal system, when there are more than 10 million Autistic people living in India?
No insurance company wills to give medical insurance to an intellectually handicapped person, whether child, adult or aged. Banks even refuse to open accounts in their name. Our social system needs to wake up and realize that giving ‘railway ticket concessions’ to these individuals does not account for our social and moral responsibility towards them.
“When I was young, I remember my mother used to ask me to disentangle a ball of wool, and teach me how to make a ‘dari’ out of it.” Mrs. Singh draws inspiration from this and refuses to surrender. Her will is to fight all the hurdles that come in front of her so that she can leave the world a better place for her son and other adults like him.
First Van
In 2011, Mrs. Singh helped a man, about to retire from his job at SBI, by recommending the consideration of his 27 year old autistic son for being given the family pension. Two years later when she met him, not only did he thank her as her letter had worked, he took her to the Indira Nagar branch of SBI in Bangalore to ask for help for ALFAA. All she wanted was a small van to pick up the six kids of the weekend program in the NGO, but SBI donated to them a 14-seater Tempo traveler cum school van. The story is a proof to the proverb that no matter how dark the clouds are, there will always be a silver lining.
“My younger son doesn’t believe me when I tell him I had hobbies too. He thinks my only interest is and always has been‘Autism’.” Mrs. Singh draws strength from her family, including her late grandfather, who was a freedom fighter. “We used to hear so many inspiring stories about him. They always had a great impact on me, and my will to always stand up for what I believe is right.” She calls herself a fighter and believes that if only one ‘keeps talking’ persistently, voicing what needs to be implemented, spreading awareness and fighting the cause, one is sure to leave a dent at least, if not a hole. This article only uncovers the plight and strife of one such Indian parent. I have only scraped the surface but with the hope that it would make a dent nevertheless.
Vsit Alfaa at: www.alfaa.org
Photo Sources: Mrs. Ruby Singh and ALFAA
