Autism does not trouble me, says Medha Sengupta, during the launch of the book 'Above and Beyond: A journey with my daughter' written by her mother Nivedita Sengupta. The entire auditorium echoed with appreciation for her courageous words!
Autism is a journey, just like any other journey! It has its highs and lows, ups and downs.
It was when Medha and her teenage brother sang "Aye Zindagi Gale Laga Le", a popular song from the movie Sadma which in itself is a milestone in Bollywood, everybody in the auditorium were moist-eyed. It was an epiphany that nothing can pull you down if you know how to embrace life in whichever way it comes to you.
About the book, author Nivedita Sengupta says the book is not just a single person's effort, it is the product of the support, kindness and motivation friends and family members lent to her during her journey with Medha.
When 4 year old Medha spoke the golden word "Maa", Nivedita said, "I could not hold my emotions. I burst into tears." Mrs Sengupta is a special educator herself.
The book blurb reads: Bringing up a child with special needs is a challenging reality. The initial confusion, the diagnosis, the prognosis and coping with each situation are traumatic. Most parents have neither the experience nor the wisdom to navigate through this unchartered and frightening terrain. They must deal with doctors, psychologists, psychiatrists, teachers and family at every step. The aim of writing this narrative is to encourage parents who face a similar situation. The anger and disbelief that plagues your mind when you are told, “your child will never be normal” is devastating. Many parents go into denial mode which actually harms the child. Proper treatment is withheld as they fluctuate between hope and despair, fear and courage. I hope that reading this helps teachers and doctors to become more compassionate and understanding. In the 40 odd chapters, I have tried to cover every aspect of this journey - emotional, financial and social.
Currently 28 year old, Medha works as a library assistant in Shiv Nadar School, Gurugram. When asked by her brother, in a 5 minutes session where brother and sister exclusively spoke to each other, about what she likes about her job, she said she loves making entries of books. Her mother reveals, Medha, had a special liking for books from her childhood. Cinderella is her favorite book.
The event was attended by Dr Amit Sen, Director, Senior Child & Adolescent Psychiatrist; Dr Shelja Sen, Child & Adolescent Psychologist & Family Therapist and Author; Manika Sharma, Director of The Shri Ram Schools and family members and friends of the Senguptas.
Stressing on the importance of special educators in schools and educational institutes, Manika Sharma said that decades before having a special educator for kids having autism was a distant dream. However, she says, things have changed now. She also thanked her colleagues who made extra efforts to help students like Medha get proper education.
On the role of a mother and commending Nivedita, Dr Shelja Sen said she had always encouraged her to write a book on her journey with autism so that it gives out a message to parents like her. To everyone, Dr Sen suggested not to let other’s stories define themselves.
Worldwide, about one in 100 children has autism which represents a diverse group of conditions related to brain development.
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