An exigent question

It was our fourth day of data collection and probably a found residence cluster after almost 30 minutes of walk. Three girls were bathing from a public tap, out of three one girl grabbed my ardent attention because she was quite different. It made me remember my visit to one autism care home that was a week before I landed in Sindhupalchowk. When asked among the three girls, one said, “She might act normal now but suddenly she starts behaving aggressively, we call her “bokshi” or “ witch”. Her mother ties her in the house or shed when the witch takes over her spirit.”

When we went to take the household data, the mother was quite dejected about this differently abled third child among normal five. When we started our rapport building, she began telling us that she didn’t want that child during her gestation because they already had two and they weren’t quite prepared for a child. However, the doctor asked her to pay 40,000 for abortion and her husband felt it wouldn’t do any favour to the mother’s body so they quit about the thought of aborting a child. Unfortunately, the child happens to be like that. Intriguingly, the child was never diagnosed in hospital for whatsoever reason I don’t know.

I wouldn’t claim without evidence that she was an autistic child but her conduct suggests it. When I visited an autistic child care home, the founder told that her child looked normal but was unable to speak till the age where every child would normally speak by then. She took her to every hospital but none of them could diagnose it as “autism” because it wasn’t much known by then. The founder went to Australia and consulted a doctor and her child was diagnosed as autistic child. She felt like settling there but her thought was provoked by the desire to introduce this thing to Nepal as many might be completely unaware of it. She founded this care home by renting it with one of her relatives. She shared her anguish about how people surfacely misinterpreted it to be a mental illness and how people receded from giving their place to rent. She asked for help to many organizations and even to the Mayor of Kathmandu but she received no help. She left her job and started looking after her child. There is a single trained teacher to teach these autistic children else she can’t afford other teachers so the mother of these other autistic children themselves teach their children and look after them.

She even said that a lot of mothers, especially in rural parts of the country, are unaware about this developmental disorder so they mistreat their children and curse their fortune. She was in fear of money however she was part of one renowned organization that she revived few donors else she feared to imagine the life and difficulties with financial crisis. Her daughter recently started menarche so it was a huge challenge for her to teach her child about menstruation and it’s proper hygiene. She herself is creatively applying methods to teach her and she has found a portion of success.

In between the conversation, she shared two things with us related to the topic,

 1) An autistic child from her own child care school was neglected by his own father saying to his wife that this child wasn’t his. This child was an enthusiastic television watcher that since his father locks his TV room to watch it alone, he makes way through the balcony to watch T.V. But his dad never calls him. This boy, even in cold weather watches TV from the window pane and his mother brings warm cloth to her child to wear while he is busy watching.

2) I have sleepless nights thinking about the future of my child, like what will happen if I don’t live another moment. Any person can take advantage of her innocence, might rape her, might molest her, might hurt her, might sell her organs, every negative possibility is possible since she can’t express, can’t distinguish, can’t be evidence.

I had no answer despite being remorseful.

Lot of nonsense things create hoo-ha in Nepal but these issues don’t bother anyone, does it? Why?