Monsters...

The room was dark and forbidding. Her breath grew laboured. Her heart beat faster. She cried out loudly. The woman who was dragging her to the room didn’t let go of her hand despite her piteous cries. Pulling her along while muttering in a language that was incomprehensible to the six year old, the woman deposited her in the room and locked the door with not even a backward glance at the terrified face of the child.

She was not trying to be naughty in class. She simply did not know how to sit still. Her body was not her friend. The only time she felt comfortable in her own skin was when she moved. So she would move either her arm or leg or head so that she could cope with the difficulty she faced in sitting unmoving in class. There were so many children in class making some noise or the other. The teacher too made a lot of noise. She simply could not understand what the shouting was about – for her every noise seemed loud and jarring. Sometimes she covered her ears. Sometimes she grew distressed and cried. The other children seemed to think she was funny but not in a nice way. The teachers would grow impatient with her especially after telling her to sit still or be quiet or stop dreaming; not once but a million times a day.

This particular teacher never liked her and she knew it. She tried hard to be nice and obedient but she got so nervous in class that it was too hard for her not to be hyperactive. The more she tried to sit still, the more she moved. The teacher got very annoyed and finally told her to stand up. She shouted at her and made it clear that she found her quite a useless child and a very naughty one too. She then sent her out of the class with a maid as a punishment. The maid was to take her to another block and lock her in a dark room. After an hour of that, perhaps she would understand how important it was to be obedient.

The girl rubbed her arm where the maid had bruised it with her heavy-handed dragging. She couldn’t see much and she was so scared of the dark. At home she slept with a little light on otherwise the monsters would come creeping out of all the shadows. Everyday her father would look under the bed and behind the bathroom door for monsters before tucking her in. Everyone knew that monsters were afraid of light. What could she do now? She cowered in the corner waiting in helpless fear for the monsters to arrive.

Huddled and rocking with tears streaming down her face, she waited. In a while footsteps could be heard along with rough voices. She shrunk herself into a smaller ball hoping that they would not see her and that the teacher would come and get her. But the door opened and two men walked in. One man was the 'uncle' at the gate and the other was the teacher who made the kids do exercises. Why were they here? She tried to get up but they came closer and the teacher started yelling.

“Naughty girls deserve to be punished. Why can’t you listen to your class teacher? Only in first grade and look at your attitude! I will teach you how to obey!”

The men took turns in disciplining her. She cried till her eyes hurt. Her dress got dirty. Her skin was blotched and bruised from their hands on her. Her legs hurt and the part where the pee came from, that hurt worst of all. She cried some more, she screamed incoherently, she promised to be a good girl if only they would stop, please stop….

On Envy...

I have never felt the need to envy anyone for most of my life. Yes we grew up without any great luxury and while we had enough and more love showered on us when we were growing up, we never had the kind of money that meant even a rare outing or a movie or that book I so wanted to read but was too scared to ask for. It didn’t really matter at the time because as kids we were very accommodating. We found simple ways to keep ourselves entertained and I believe all those hours writing and performing little plays with my siblings was the root of my creativity. We could make magical landscapes out of nothing more than an old sari or an inflatable mattress. The real joy of our childhood was the truth that we needed no other in our world and we were usually happy.

As an adult I have never felt the need to envy anyone the usual things that are the object of envy. I have never coveted another’s wealth, lifestyle or ability to make money. I have also not envied anyone else’s eyes or hair or figure or confidence. I have of course wanted things I couldn’t have but it never hurt me that another had them. This lack of envy was not because I was a spiritually superior being but rather because it simply did not matter to me. 

But today and every day I do envy most of those around me one thing – the luxury of being completely ignorant about the terrors parents of children with difficulties like me face. How easy it would have been had I not have had to worry about my child! Nothing matters as much as the desire to secure his life. How will I do that? When will there be enough resources at hand for me to ensure that at least monetarily he will not suffer? When will a day come that I don’t have to see how much this boy struggles? Why is there not more clarity as to how I can help him? Is the way we have embarked on, the only way or is it the toughest?

The feeling of holding on to envy does not sit well with me. I am by no means saying that there are none who envy me. Many do. Some do so unreasonably and slip into a cruel mode of trying to break my spirit so they can see me fail. Even that ceased to matter a long time back. I am also not saying that no one else has problems or that they have nothing to worry about. The stories as visible from outside are always far away from the truth of the reality that seethes inside. All I am saying is that for the first time in my life, I envy people something with a fierce intensity. It is a useless emotion of course. But it also happens to be distressingly human. It is with disappointment that I observe the envy in myself. It is one more thing I have to outgrow.

Envy does no one any good – least of all my child. I try to look at his handsome face with hope. I want to believe that all will be well. But that would be delusion of the highest sort. He will always have problems. People will cheat him. There is no way this innocent soul will survive in the rough world that awaits him. But we have to go on somehow. It is a blessing to have innocence, to have a pure heart, to shine with the radiance of unadulterated love. I hope these strengths will protect him as he grows up. I hope he never has reason to envy anyone their ‘normalcy’.

A day of wonder

Yesterday was a day of wonders. The image of that day is one that shall always be burnt brightly on to the film of my mind. I don’t think it will lose clarity or value as the years pass. I hoard little moments and if I am very lucky, a handful of days to store so that I can survive the hard times. The memory of a look, a smile, a word or sometimes a whole way of being can be saved against the ravages of time so that it is eternally fresh and beautiful. These moments are my blessings. They are my reward for having to manage during the days that are too difficult to speak of or write about – they are my armour against hopelessness and defeat.

The whole five weeks of my vacation have been nothing short of miraculous. After uncounted years, I felt the stress fall away and leave me looking more rounded than I have ever been (that may not be a great thing ;)) but the feeling of being unfettered by anything more burdensome than light cooking and finding new ways to entertain the twosome by taking them on buses and trains to parks and malls big and small, opened up a part of me that I never knew existed. Singapore is a lovely place for a vacation. There is much to see and do and my favourite moments have been those spent with the family in out-of-the-way spots, sipping English Breakfast Tea and watching the unfolding beauty all around me or simply discovering fresh seafood of all kinds to experiment with and get rousing appreciation for at dinner time. Little joys filled the days.

But what made yesterday special was the idea that my son could set aside the sensory issues that have been plaguing him from the time he was born. All along Appu would cover his ears at loud noises, cry in terror at certain pitches of sounds, get seizures at being exposed to video games or certain lights and be obsessive about never getting so much as a drop of water on his clothes. I have gotten angry with him, felt terrible about his pain and felt untold anger against the world for his condition. But he is as he is. I can only be his mother and hope.

Yesterday when we went to Universal Studios, he surprised me no end. He stood in the queues patiently though I was getting annoyed at the wait. He tried out all the rides and I do mean all of them. He got soaking wet at the water ride while the rest of us merely got splashed. And yet he didn’t bat an eyelid. He told me “Its okay Amma, it will dry!” after I asked him if we could buy him new shorts since his jeans were completely soaked just like his shirt. I couldn’t believe it. How could he cope with the sensory irritations which used to overwhelm him till date? When we went on the Mummy roller coaster ride which was in the darkness with rather scary twists and turns, beetles, fire and screaming mummies, I thought he’d panic but at the end of it, he was laughing gleefully and saying “Can we do it again??” And yes, we went back and did it again!

S and I looked at each other with amazement. It went on like that with each difficult ride growing more enjoyable. And we, as a family, enjoyed the day so thoroughly that it stands in my mind as a precious gift. People with regular families may not know the value of a day that has each member smiling with happiness but for me, it is something that is priceless. We may or may not have such perfect days again but this one day has truly transformed me and for now, I can ask for nothing more.

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.