When Life Pulls You Down

The reader, if there is one, willing to listen to this monologue, will surely be disappointed: for it isn’t a story of hope and jubilation. It’s the story of a mother who is ventilating her sorrow and pain, and who is still grieving. Often fear and despair fleck the face of flickering hope. Fear looms large, the fear of being pushed to the teetering edge; the thin line between sanity and insanity begins to blur, presented to the view from an entirely different vantage point. Many subtexts surface at this juncture: the existentialist’s dilemma, the sordidness, shame and pain, helplessness discovered at the worst possible time of life; faith and relationship are called into question! There is no running away from this cul de sac.

In so far as I can remember, albeit vaguely, I first came to hear about autism in Rainman. Though the movie had hugely impacted on my mind at the time, it was nothing more than that. It was just that I had seen the movie and been moved by its emotional side. Perhaps I read some reviews of the film, and that was all. Then the term got tucked away in some obscure corner of my mind. In Rainman I saw autism from outside!
In the mean time I read a moving and inspirational tale about a child with autism in The Reader’s Digest. At that point of time it never occurred even in my wildest dream that I myself was going to love someone in my life more than anything else in the world who would be suffering from this lifelong condition! Then my son was born a few years later. I know it for sure that my son did not have autism when he was born. He had birth trauma and had Ryle’s tube feeding three days after he was born, and was on antibiotics. That traumatic period over, I thought that the worst was over and done with; I had not the slightest idea of what was coming next! He was a very beautiful and impressive child…cuddly, dainty, and quite adorable! I was always very thankful to God for this extraordinary gift he had bestowed on me! It was like a dream come true; I did not know what I had really done to deserve such a beautiful child! On my way back home from work it became almost an obsession with me to be on the lookout for small, underprivileged children of his age! And when I’d find one I could not move my eyes off him/her; everything else in the scene would fall out of focus! A kind of motherly feeling of sadness would overcast my senses! My son’s stock of words was quite amazing: he made a very smooth and quick transition from the pre-lingual to the lingual stage. Now I understand that, being immunologically weak, he was a very helpless child. There were many killers lying in wait for him, but I was totally unaware of them. Ah, then came the first onslaught! He was only nineteen months old at that time and my poor child couldn’t withstand it! It was a fever; though the temperature was not too high! But there was more to it than meets the eye. I noticed that he had undergone a gradual metamorphosis in less than a month! My son was gone! Alas! He lost his tongue. Until then he used to speak in sentences! The last sentence I heard him say was, ‘We are going home’ (Amra bashai choley jachchi)! I was beginning to have an uneasy feeling. At toy stores I would be at a loss to know what would be good for him, for I could not think of anything that he could play with! My doctor brother expressed concern that my son’s pace of development had noticeably slowed down and his language had been stunted. He was forgetting the words he knew, the words he uttered got distorted and, gradually, he was losing all his links with the real world. We went to see the doctor about the soundness of his hearing. Nothing was wrong with his hearing. He loved music whether it was playing on the cassette player, TV or VCR. When somebody sang a song and fumbled for words in the lyric, he could instantly supply the cue. Sometimes he would come running, like one possessed, to listen to his favorite tune being played. Another conspicuous feature at this time was that he was avoiding eye contact. He stopped responding when we called him. After a couple of months we took him to a hospital where one of the doctors, on examining him, suspected that he might have autism! I couldn’t believe my ears! By that time I had had at least as much familiarity with the disorder and the term as could shock me when the doctor made the clinical disclosure. I knew that it was an irreversible condition. How is one supposed to feel at such a moment of dark revelation? Suddenly I felt absolutely hollowed out and a benumbing fear paralyzed my senses. From that particular moment on, my whole world changed forever and became a surreal one! There was no escape for my poor little boy; not anymore, after the doctors passed their sentence on him, as though they were God’s very agents dispensing His dark will for my poor little darling once and for all! I frantically searched for books on autism in the library holdings of my university where I teach. There was hardly any information except desultory lines here and there in footnotes and endnotes such as ‘autism is not curable’, ‘the children can become functional with some structured training’ and so on and so forth. The Internet was not readily available then. My brother-in-law gave me some printouts on autism downloaded from different websites. I moved in with my parents; my brother bought a computer and took an internet connection. We left no effort spared to get a correct diagnosis of his disorder and pulled out all stops like all parents of children perplexed with developmental delay. We took him to India after a couple of futile visits to Dhaka. Some said it was autism triggered by viral encephalitis. Apparently, the visit to India was successful in a sense; we were strengthened with new hope but now I realized in hindsight that we had not taken him to the right place. The diagnosis swayed between autism and seizure disorder. His MRI didn’t show anything while his sleep EEG showed a focal point. I joined some parents’ groups of both autism and seizure disorder on the internet. Interacting with the parents in these groups gave me great mental strength at that point of time. My son was a little child. He had many years before him; so, it was not yet too late to lose heart and hope. People on the forum were really very helpful and kind. I came to know from them of some titles of ground-breaking works published on autism. It was really unfortunate that I did not get them from any psychiatrist either in Dhaka or Delhi. I contacted a renowned pediatric neurologist in Chicago through email and made an appointment with him. Until then we were not aware that taking my child to the US for treatment could be another insurmountable hurdle for me. When we were refused the visa at the US embassy, I was awakened by a new variety of shock to the realization that nothing in this world was meant for my little child. I was too naïve to realize that they could not look upon him with the same suffering heart as ours. I gained this insight the harder and crueler way. Many years of struggle with my child’s disorder have passed. Thus I was lessoned in heartache, pain and trauma which I would not have known in any other way. Now that my son is at the threshold of childhood and boyhood, his autistic awkwardness is being increasingly evident in his behavior. Living with autism all these years in the third world country has taught me at least one thing! Even when you are not pessimistic about your condition, people tend to pity you and come forward with gratuitous advice with a sense of social superiority.

Sometimes I see my son in the position of Kafka’s Gregor Samsa facing up to the cruel indifferences of the world to which he really does not matter and to which his existence is hardly visible. Everybody seems to look through and pass over him. When we failed to go the US we took him to Singapore. He was five at that time. There when the nurses wrapped him with bed sheet to draw blood from him my non verbal little boy let out a heart rending cry saying ‘Bachao’ which means ‘Help’! I was so surprised: He broke long three years of silence! In that alien land he managed to say a few words after a long gap and behaved almost like a typical whining child. My heart was breaking when he cried ‘ma bachao’ which means ‘mommy help!’ I read that sometimes it is possible to extract language from them by putting them in some kind of tense and adverse situation! These days I feel as if I don’t know my son anymore! Nowadays most of the time I feel that I’m a total failure; I couldn’t do anything to help my son. He is now zillion light years away from me and sometimes my spirit dampens and I feel there is nothing we can do now and he is beyond any help. Having a child with autism makes you marginalized in the society; all the perspectives change. Everyone hopes that their children will outlive them, but we neither want to die before our child nor want him to die before us. It is one of the cruxes we are facing. In all possibilities we will die before him and he will have to spend more than half of his life without us! That thought is extremely frightening; it is enough to make you lose your mental equilibrium. I always suffer from a sense of guilt because I couldn’t throw away my career for him, I couldn’t quit my job! Life moved on though not in the normal way for us. Sometimes I feel terrible that I have become used to the deep sadness I have in my mind; now in spite of this sadness I still want to enjoy life and I feel terrible about it. I should not, even in my subconscious mind, want to move on! Not long ago once I slipped into a very beautiful dream! In my dream Gobi was okay. Yes we call my son Gobi. Well in that sweet dream he could speak. My heart became soft and mellow each time I looked at him, and how tenderly I looked at him! I entirely forgot my real existence, my real world, where my real Gobi is suffering. Suddenly I remembered him! In my dream someone told me that I could stay in that parallel world if I wanted to! I also loved that boy in my dream, but I had to choose one. Even though I grew a tremendous fondness for this boy, I knew I could never live without my Gobi, not for anything in the world. I was getting restless: ‘I have to go back! My Gobi is all alone! What will he do without me, the boy can’t speak, can’t communicate and he can’t even play!’ Then I woke up from my dream with a heavy heart. At times I feel my son should have been born to some other parent! I’m living with lupus, stroke and AVN. My son would have been far better off if he were not born to a sick mother! A child with autism and his family are marginalized in the society, but their position is far better when he is a child if we compare it to what he and his family are going through in his adolescence! But we don’t know our future at least I did not know! A new layer of hell is being exposed each day. Your marital life is at stake; you discover many ugly sides of your partner which otherwise would have remained unknown. It is the time of blaming each other from time to time, yelling at each other! Sometimes you hate yourself discovering a hitherto unknown very ugly side of yours! You are pushed against the wall; you are leading an extremely bruised and weird existence! In extreme situation all the rules and norm of civilization are bound to break! The children are caught in the middle of such a situation. The adolescent children with autism usually do not fit any where! When they move through adolescence they become unacceptable to the society; they don’t have anywhere to go to. If you don’t own a house, there is a very few people who will let you a house! In our country there is hardly any proper service for them. Lack of proper service becomes a nightmare to the parents. The poor,awkward children remain almost, always confined. They become physically strong, their non compliance and resistance keep others away from them, and they get bored. These days Gobi has been having regular meltdowns. I feel so helpless when he bangs his head against the wall! I can’t go near him! I can’t even be sure if it is his behavioral problem or it is due to any physical problem.

We had to close down the ABA school in 2008 which we started in 2002. I was home schooling my son after that, but now he has been without any trainer for more than a year! He is on different meds, different anti psychotic drugs. He cannot sleep even if he misses one of the dosages. If this is not hell what is! There may be things in the past which people are not very proud of. When people are destined to be in such absurd situation, the specters of the past peep through, many skeletons pop up and memories of their killing of many Albatrosses haunt them. You have to be very strong not to yield. I’ve been trying to be strong for a long time, I tried to cope, even in all adversities I tried to empower myself, even now I try to get inspired by the people I admire, by the books and music I love, I try to cull happiness from whatever sources I can, because I will not be able to do whatever little I can do for my son if I’m not happy, and I knew it all the time. But now I feel things are falling apart, I can’t hold the pieces anymore! I don’t blame God for it; it is just one of those absurd situations that some people have to face, and if it were not me then it would have been somebody else!

I can’t say I’m not depressed. I always look back;. I go back to the time when he started talking, when he called me ‘Ma’, when once he asked me to bring a picture book of ‘Meao’ for him, when he could reply to the questions he had been asked. I still remember that soft, lilting voice! He had given me so much joy and happiness! I know it’s of no use reminiscing, but I really can’t help.
I miss Gobi so much on special occasions; he cannot take part in those! I feel for Gobi and his younger sister because they cannot share the siblings’ love. I feel sad for my son because he is missing out on so many things in life!

Lastly I guess I shouldn’t give up hope however hard it may be! Who knows what tomorrow holds for him! Maybe it will turn better, maybe worse, but I don’t have any option but to hope. Though there has always been an urge to capture my rambling thoughts about this very personal and sensitive issue, an issue which is very close to my heart, at the same time something was always holding me back. Now I feel free in a strange way. Any kind of writing I know is cathartic and therapeutic, and a healing process is on when you start unburdening yourself, when you start sharing.