At the age of 35, how many of you would like to start school all over again from kindergarten? Not many, I presume. There is so much to do at that age. There is a husband and a house to take care of, parties, night-outs, romantic holidays, shopping and of course the self-defining career. To start school again is not something that would feature on the list of priorities of a modern 35 year old woman.But I know a lady who did this. As a mother of a five year old son, diagnosed with autism, she decided to join school again. No school was willing to admit the boy. "There are schools for children with special needs, please take him there," they said. The special schools were quite a dampener. They did nothing more than babysit the child. This was unacceptable to the mother, who was neither in denial of her situation, nor willing to give up on her son. One reputed school following the international curriculum accepted the kid on the condition that the mother was willing to take all the classes with him. And so she did. giving up on her career, her personal joys, her 'me-time' she started school again with her son.
Autism is viewed as a tragedy. As a disorder that robs children of their lives and parents of their children. It took a lot of courage and tenacity for her to grapple with her son's development, autistic diagnosis and finding the right help.School in the morning, followed by some recreational activity and then therapy in the evening. Life revolved around this routine. She must have missed movies, she must have had to forgo reading the latest bestseller, she would not have had time for beauty sessions and dress trials. The things that we take for granted had stopped for her. But she had the joy of being useful to her son, of being able to help create a future for him. To start him off on a path that would eventually make him self-reliant in her absence. I think she saw that as a better trade-off.
"A happy and expressive child, becomes visibly confused and uncomfortable, while therapists curiously look on and continue prodding him," she wrote in her diary, during the early years of therapy. I can only imagine the frustration and stress of wanting to help her child while protecting him and letting him be a kid. She continuously felt torn between listening to her maternal instincts of wanting a happy, relaxed childhood for her son and listening to the professionals who advocate for stringent treatments. She must have felt helpless not knowing what her son needs and wants; never truly knowing what he is thinking. While he made great progress some days, other days, it would have felt like taking several steps back. The school was always encouraging, she said, the therapists rarely so.
When the focus of a woman shifts from the husband to the child, it takes effort from the husband to keep the marriage alive. In this case, the focus was centred on the little boy, everything else seemed hazy. The relationship between the couple suffered and grew distant. A lot of things had to be forgone, like moving to a new city for a better job, social interactions were not easy, couple-time was less as the mind was occupied and the body, tired. The result was a woman who did not want to see this gap and a man who delved deeper into his work. As parents, however, they continued to be the band on which the little boy could always hop and play.
She was jealous of the little worries that the other mothers at school had. She, at times, resented other mothers who eased through decisions for their children and worried over whether the birthday gifts would be liked by the child, or whether it’s time to move out of the crib and into a big-boy bed. She did not have the luxury of such indulgences. When she was done with the day's study with her son, she worried about supplements and approaches to try and encourage him to eat food. She lay in bed and wondered how her son would ever be okay in the world, how she could help him love who he is and have his needs met. She could never be easy. She could never be still. Always, she was running, moving, searching, finding. Always, she was fighting against the unbearable default of failing her son.
Years passed, some were filled with angst, but mostly they were years of learning and being happy in small joys. Last year she graduated with her son from school. As they shared the stage with their degrees, a woman of 53 and a boy of 23, the entire crowd erupted in applause, and why not! This was a journey that tells the story of an exuberant boy, who loves art, reads music, sings “Bohemian Rhapsody” in its entirety, makes videos on his computer, hugs and cuddles his parents, and is much more than his diagnosis; and it is also the story of a mother who believed that she could help her son.
As we celebrate Durga Puja in all its fervour and gaiety, and especially today, Maha Shashti, which is a day that is dedicated to the well being of the children, I dedicate this post to the mothers of children with special needs. The power, the energy, the fighting spirit is not always found in myths and legends. They are, in fact, a depiction of mothers like these who never say never and strive continuously to make life better for their children. "There is no tragedy if you don't choose to see one..", she says, and I believe.
