Today...

Today is World Autism Day. Perhaps it is good to have a day for women, animals, mothers, fathers, children, sweethearts, a disease and now autism. It serves to build awareness. It pivots the public attention to an important issue or cause which would otherwise go unnoticed. It also highlights the need to do something about the said issue or cause. 

I have never been too much of a fan of ‘Days’ however. A day for a cause seems too pat, too convenient. It makes me think that with the right kind of marketing, anything can be raised to a cause. Every such cause then has a day. The other issue I have with ‘Days’ is that it eases the collective conscience without really getting anything done. It is a hassle-free way of saying “Oh gosh would you look at that!” and then forgetting about it. I forget about things that don’t affect me directly too.

 I cannot however forget something that moves me every single day. Autism is a part of my life. It has been so ever since my son was diagnosed at the age of five. I knew something was not quite right when he was three or so. It took me two years to get a diagnosis. Autism is not easy to live with. No one can know how tough it is for the affected person to survive in a world that is patently designed for people other than them. The world is too noisy, too bright, too fast, too confusing. Language comes across as cacophony sometimes. Not many have the patience to understand that sometimes they need to withdraw into their own inner world just to be able to cope with all of the madness. It is like living in a bubble through which sounds, sights, smells and even touch are distorted. One day perhaps I will know what my child goes through.

There is much to do in this country to build awareness for a disorder that is more prevalent today than it ever has been. The autistic people here have it tougher than in most other countries because there is simply too much resistance to their very existence. In a country when plenty of so-called normal children die of neglect, malnutrition or even ignorance, who has the time to care for imperfect children belonging to others? Who has the time to devise strategies to teach them so they too can become part of the society? Who has the heart to give them jobs that are meaningful so that they can feel valued? There is, as I said, much work to be done.

On World Autism Day, I sit and write. I am tired of writing about the injustice that I have come across on behalf of my kids at the centre. From people who refuse to even let our kids spend a few hours in their school to be exposed to neurotypical children to those who hesitate to share even second-hand books with us or those who charge us extra because they see that we are forced to pay more for things that everyone else has access to easily like music lessons or a pottery class. No one sees the child in the disorder for the disorder looms larger than life. At least on one designated day in the year, I wish with all my heart that these children are looked upon with eyes of love just as any other child should be.

Of Miracles...

Miracles can happen. That is what the world thinks. That is what people who fight every day believe in. That is what one lives for when all else is lost. A miracle is hard to define. It is not an illusion or a magic trick or a party gimmick. It is perchance to experience something or witness something that is so unexpected and so out of the ordinary that logic pales and the intellect takes a back seat to faith. That is one definition of miracles. The other definition is, simply, hard work. If you do something with dedication day after day after day with no thought other than to solve that one problem or better that one life or reach that one goal against all odds and against what experts, public opinion or even known science tell you, you will get somewhere. It may not be where you want to get. It may not even be a complete solution. But the path to attempting to reach the goal will itself transform the problem in your mind from insurmountable to acceptable and finally the miracle will happen.

It is not easy to hold on to faith when every day is either difficult or holds the promise of being difficult. Not everyone has to deal with such problems of course but in my experience a miracle needs a big enough problem in the first place.  I read about people who do unbelievable things in conditions so adverse it will make you wonder at their strength and ability. I read about parents who leave no stone unturned, who squeeze out every ounce of creativity and put their lives on hold for all time so that they can help their children in the way they needed to be helped. One recent story from the NYT about parents who developed a language and social toolkit out of Disney movies for their autistic son moved me immensely.

Owen sounded like Appu in that he was fine till he was three and a half years old and suddenly began to regress. No one knows why. Autism as a diagnosis never answers the question of ‘why’ – it only labels. Parents keep blaming themselves for years not knowing what they did wrong to have their children become autistic. Was it the vaccinations that they dutifully got their kids to take like any other responsible parent? Was it genetics? Was it environmental pollution? Was it processed baby food? Who knew?

Owen was hooked on to Disney movies in a way that made it possible for his parents to comprehend that it was the single most powerful tool they could ever get to teach him how to be part of this world. They enacted the tales. They talked to him endlessly about what each character might have meant when he said something or what motivated him or her to act in a certain way. The movies gave Owen cues on emotional behaviour and on how to deal with problems in the real world. He was using them as a way to make sense of the world around him. He was learning to talk with them. He was not only drawing them in his sketch books but also breathing life into those characters. And the whole family as well as the support staff of psychiatrist, teacher, therapist and counsellor went along with it. Owen is a really well adjusted young man now who has even found love. For me that is a miracle. I too live in the hope that what we do every single day will lead to my son also being gifted with a miracle when the time is right.

A different kind of victory...

I was very proud of my little girl yesterday. Let me correct that. I am always proud of her because she teaches me life’s lessons in her own unique way just as Appu teaches me to be far  stronger and more patient that I ever thought I could be. I tell them things that I hope will stand them in good stead over the years. I do not know how much my son comprehends but he  certainly does get a few of the lessons I have tried to impart. Mahi listens quite carefully but since she is yet very young, I usually think she isn’t really taking me seriously.

Yesterday, she came back from school toting two heavy bags and looking exhausted. She told me her brother had picked her up from the gate on his bike saving her the effort of carting her bags all the way to the house. I told her how lucky she was to have a brother who cared so much for her and she grinned in agreement. Still sprawled on the floor amidst the bags, she began recounting the highlights of the day as she peeled off various straps and belts. She had had two football matches in school. One was an inter-house one while the other was a small match between two sections of the fourth grade.

She wanted to talk about the second match which took place late afternoon when they were all tired. Her friend Kiara was the captain and she had the right of first selection. She selected all the best players including Mahi leaving a few non-players to make up the other team. Mahi apparently protested pointing out that the teams were not balanced at all and it was grossly unfair. No one bothered and the match started. Mahi’s team was winning effortlessly with the opposing team unable to score even one goal. The opposing team’s captain quit and walked off in disgust by half time. Mahi quietly stated that she would rather help the other team and walked off to join them. She managed to score one goal for the team by the time the match ended. Tired and a little sad, she made her way to the bus and home.

Looking thoughtful and a bit nervous, she came closer to ask me "Amma, do you think I did the right thing?". I asked her what she thought of her act. Her face appeared serious as she said “Well, the first team only wanted to win. I didn’t like the fact that the others did not get a fighting chance. It was unfair. I did what I thought was right Amma.” “Did you win?” I asked. “No, I made just the one goal. They had lots.”

“If you know you have done the right thing and actually stood up for what you believed in, then it took a lot of courage indeed. I am so proud of you Mahi. I can learn lots from you!”. My little sprite smiled a huge smile and hugged me tight. She then went off to shower humming happily all the while as I watched her with a lump in my throat. I knew how much she loved winning. It must have been hard for the child and yet at such an early age she knew that standing up for what was just was more important than winning. I felt truly blessed after hearing her story. Here’s to little Mahi staying true to herself always!

The Dance of the Gods

After many years of carrying around a fond wish in my heart, I finally got to see a kathakali performance this evening.  I had almost not been able to make it since I thought I’d have no company. My husband is currently away and another friend who was of a like mind was unfortunately in Kerala and therefore I decided against going alone. It was S who said “Post it in Facebook – one of your friends might actually want to go!” So I duly posted it not expecting a single soul to be interested. But just as I posted it, my eternal pal T said she would love to join me and I was thrilled. So we made plans for the Sunday evening performance and en route I gave her sketchy ideas on Kathakali. S is of course an expert but I had never watched a single Kathakali performance and so I approached the programme with a mixture of anticipation and apprehension as to whether it would make sense to a novice.

T and I met up with one more friend of mine and we all sat together. Thankfully he could grasp most of the meanings of the ‘padams’ or song verses and we got a decent enough interpretation. The opening scene of the Daksha Yaga performance featured none other than Kalamandalam Gopi Asan, one of the foremost exponents of the art. His graceful movements and facial expressions belied his age and the elegant little piece that he performed was a perfect beginning. He did not take the stage as Daksha for the rest of the performance however. The entire enactment was mesmerising. Daksha (now played by another artiste), Sati, Shiva, Indra, Veerabhadra and Kali made up the cast along with two pint-sized bhoothaganas who looked more like kutty chathans (they were terribly cute!). 

The final scenes where Veerabhadra and BhadraKali ran to and fro , yelling and brandishing sword and axe and screaming bloody murder right in the midst of the audience was spellbinding. The sheer grace of the dancers who with their limited movements and unlimited expressions managed to convey the story in all its beauty on a cramped stage is simply inexpressible. Three powerful dancers on a tiny stage displaying Daksha’s determination, Veerabhadra’s ferocity and Kali’s bloodlust made for truly a spectacular watch. I sat up in my chair during those scenes feeling the shiver of goosebumps  as the dancers ran this way and that all in time to the rhythm of the chenda and the madalam. The music and the scenes transport you to a different world – a world of passion, fury, glory, compassion, gods, villains and every wonderful thing to a higher degree than imaginable. All three of us enjoyed the performance thoroughly. I definitely wish to go again and learn more about this superb art form. Not knowing anything except the story although enabling me to comprehend, still left me feeling that I wished to know more of the background of the entire art form and to learn more of the beautiful kathakali sangeetham or to be able to appreciate nuances such as the main character always being on the left of the stage or the chenda never being played while a female character of importance took centre stage. 

A perfect Sunday night has drawn to a close and unlike my usual Sunday evenings where I feel a nameless sadness take hold of me, today the demons of low spirits seemed banished to a far off place.

For our children...

A country that treats its children worse than its sewage has its priorities topsy-turvy in my not-so-humble opinion. What is the purpose of producing so many children every year if a large percentage of those very children have no access to food, healthcare or education? Why do we have children if we cannot keep them safe from abuse? Why do we allow maids, drivers and assorted paid ‘caregivers’ complete responsibility over infants and small children who cannot possibly be in a position to tell on them? Why do we allow demented losers who could never in a million years get a job in any other capacity to teach our children?

We do all this and more because as a nation we consider our children dispensable. The number of children as young as eight committing suicide by hanging is growing. How does such a young child even know about how to go about hanging himself or herself? Has Google’s penetration become so widespread that even little children can go online and find a self-help video on hanging? Why is the first resort after being chastised for low marks to go and off oneself? There is a tremendous lack of character as far as one can see. If you cannot take a failed test in your stride, how do you expect to deal with death, disease, random cruelty, natural catastrophe or any other tragedy worth its name?

The government would rather waste untold amounts of money thanks to the basest kind of corruption than earmark it in an enforceable manner on education. There are piles of funds lying in odd departments for the education of special needs children but who has access to it? Where is the framework to enforce implementation of RTE which would prevent people like us going abegging to even low-grade schools in a bid to seek inclusion for our children? The complacency of the idiots in charge appals me. One day when autism is at their door and they cannot ignore it for if not their children, their grandchildren will certainly be afflicted, where will these characters go? If there is no infrastructure to teach these children now, what will happen in twenty years’ time when 1 in 150 grows to 1 in 80? All those superior folk out there who think its great to abuse and discriminate against children whose only fault is a neuro-developmental disorder of no certifiable cause need to be decimated as intolerance is one of the evils that can pollute entire generations.

Treat every child equally. Pay attention to the child’s needs. Stop teaching them to be selfish for selfishness needs to be taught if it is as rampant as I see it today. Stop making them intolerant. Stop getting them used to instant gratification. Stop praising them ridiculously for achievements they have not attained yet. Stop telling them that they are entitled. Teach them faith. Teach them will power. Teach them kindness. Teach them patience. Teach them generosity. Treat them like they matter. And for God’s sake, listen to them….