Hyderabad NGO Margika’s book 'Mindscapes' highlights beauty of the world inhabited by kids with special needs.
Real superheroes live in the hearts of small children fighting big battles. Dr Neena Rao can vouch for that.
A decade ago, in 2013, when her 12-year-old son Harshvardhan was diagnosed with Asperger’s syndrome – a developmental disorder that affects an individual’s ability to socialise and communicate – Dr Rao knew that life ahead was not going to be easy.
“First, I was in denial – no this cannot happen to my child, he is so bright,” she recalls thinking when she learnt of her son’s condition.
“After that, I felt angry: Why him? I felt dejected too: What have I done that this should happen to him? And then slowly, there was acceptance: I need to give him the perfect care he deserves.”
Now 24, Harshvardhan is an immensely happy individual today. His parents were by his side all along, and even relocated to the US to ensure he had the right education and treatment.
Dr Rao wants to now share thought-provoking insights, extraordinary talents, and heartfelt stories of other young people with special needs through a coffee table book titled Mindscapes.
The book, produced by Margika, a Hyderabad-based NGO started by Dr Rao for differently-abled children in 2017, was launched by Telangana Governor Dr Tamilisai Soundararajan on 6 December.
“The book showcases the strengths and the beauty of this special world,” Dr Rao tells South First.
Born and brought up in Pune, Dr Rao is married to a Telugu man. A PhD holder, Dr Rao’s career in academics and development spans 20 years. She has a diverse set of experience in both national and international academia, research, training and implementing development projects.
After living in the US for seven years, the Raos moved to Hyderabad in 2006. Dr Rao’s first stint here was with the World Bank, where she did cost-benefit analysis for the rehabilitation of community-based minor tank irrigation systems in Andhra Pradesh.
She was later associated with the Naandi Foundation, one of the largest social sector organisations in India working to make poverty history, where her job entailed a lot of travel; Harshvardhan was six or seven years old back then.
What was worse, Dr Rao recalls, he was also proving to be more than a handful.
At first, the child was a “little restless” in school. But when the Raos received a few complaints about him fighting with other kids, Harshvardhan had to be admitted to a smaller school.
But the problems did not end here, they had only begun, as the new school had to close down “because the Right to Education Act required big infrastructure”.
After putting Harshvardhan back into a bigger school, things began to spiral. “He could not adjust even for two weeks,” Dr Rao says. “He was in Class 8, and by then, we had started noticing he was having issues adjusting with children of his age.”
Harshvardhan mingled well with older or younger children, but faced challenges in dealing with those his own age.
A suspension from school was a traumatic experience for him.
It was around this time that he was diagnosed with Asperger’s syndrome. “My brother-in-law, who is a psychiatrist, advised that we move back to the US for Harshvardhan’s better care. And so, in 2015, we left India again.”
Dr Rao says it was a “good decision” to leave the country at a time when the education system did not offer inclusive classrooms.
“In the US, the education system is not perfect. But compared to India, they are at least 20 years ahead of us. It was a relief,” she says.
“They provided him small accommodations; like if he was restless, he could leave the room in the middle of the class, go take a walk and come back. They were understanding if his assignment submissions were delayed.”
The cherry on top: “He passed from high school with honours”.
This was when she thought, “If educated people like us have gone through so much due to a late diagnosis, imagine the plight of other people who don’t know how to wade through such a situation?”
Her son’s condition inspired her to start Margika in Hyderabad in July 2017; her aim: Bridge the gaping shortcomings in the current approach to treatment in India by building capacities of all those concerned.
Helping Dr Rao in her project is Dr Matcheri Keshavan, professor of psychiatry at Harvard University, who is on the organisation’s advisory board.
Margika encourages screening of all schoolchildren for learning disabilities and trains teachers and parents to offer the best care to them.
The book, Mindscapes, is an outcome of a virtual talent show the NGO organised during the pandemic.
“The objective behind this coffee table book is to celebrate these children’s lives. We only celebrate a child when he or she gets into an IIT or becomes a doctor. But we feel like celebrating the other special kids is equally crucial,” Dr Rao explains.
The book is a compilation of art and poetry written by several young people with special needs. It also “attempts to move beyond the clinical and academic nature of discussions surrounding disability/neurodiversity/special needs; it explores the role of artistic expression as a powerful healing tool”.
Dr Rao picks an essay by Alec Kissoondyl, a 26-year-old American of Indian origin who is an editor-writer of a magazine, as her favourite contribution in the book. In the moving write-up, Kissoondyl reflects on his 24-year-old sister, who is non-verbal, and how the family has developed an intimate way to communicate with her.
“Jessi has autism. Alec has so beautifully written about how he interprets her expressions. It is one of the most feeling essays I have come across,” says Dr Rao.
The book also includes biographies written by Mumbai-based law student Palomi Vatsayan and verses by Hyderabad-based special educator Afroze Fatima.
The first chapter is by Dr Keshavan on art, brain and healing. He discusses how art influences the brain and how art therapy can be utilised for helping individuals with emotional brain disorders and developmental difficulties.
Dr Rao asserts that the book maintains a positive tone. “We want to help families understand the beauty of this journey and not just the challenges,” she says.
“I am very excited [about the launch]. Because it is one of the milestones I wanted to achieve. And you know, it is important, as we are presenting these children’s works to the world!”