This is a reflection on our ongoing journey with our son. It was written in September 2013. I’m sharing this to provide a glimpse into the world of special needs children and their families.
A few days ago, my wife called me excitedly to Nikhil’s room. As I walked in, Nikhil bent down, placed both his hands on the floor, folded his leg and sat down. We celebrated with the joy that parents experience when their children achieve a milestone. Nikhil had just learned to sit down unassisted, he had achieved a milestone and he was a little over seven years old!
“Whole”. He suffered from colic for the first three months and after his colic stopped, we heaved a sigh of relief. We noticed that he had a tendency to drool but did not pay much attention to it. When he turned 6 months old, Nikhil had not started rolling over. We saw a pediatric Ophthalmologist since he seemed to have strabismus. Having an older daughter, we had a frame of reference and Nikhil was lagging behind in meeting his milestones. Our pediatrician advised patience since boys sometimes tend to meet their milestones a little later compared to girls. When Nikhil was 9 months old we went to India, I had an opportunity to work from home for 3 months and we decided to return after celebrating Nikhil’s first birthday in India.
While in India, we noticed that Nikhil had a tendency to bang on objects. My dad jokingly said he would become a “tabalchi” or tabla player when he grew up. We also noticed that he would flap his hands and vocalize, we just thought it was an expression of his excitement. We returned home after our stay and visited our pediatrician to follow up on a cold that Nikhil had developed when we were in India. He had earlier mentioned that he feared that Nikhil might have Asthma and we had spent a couple of nights agonizing over that, all the while ruminating about the injustice of it all. I already imagined Nikhil sitting on the sidelines while his peers played soccer or ran about. Our pediatrician then confided his fears to us. He had hoped that our trip to India and the larger family setting would have helped Nikhil. He now thought that Nikhil, based on his behavior, had a neurological issue. It was as if somebody had taken a sledgehammer and slammed it into my stomach. My wife broke down and through my fog of bewilderment, I heard the words “Fragile X” and “Autism Spectrum”. He recommended that we meet a neurologist and a geneticist at Miami Children’s.
We returned home, numb with shock. We had gone in dreading to hear the diagnosis of the dreaded “A” word – “Asthma”, we returned home fearing “Autism”. I’ve never been depressed, but the next few days came closest to what I think depression is. We had just returned from India, we did not even bother to unpack our bags. Our whole world had turned upside down. I had no appetite to eat, I was working from home so I really had no reason to go out. The internet can be a great source of information and I spent hours trying to read up on Fragile X, Autism and so on. Each page had a link to another neurological or genetic disorder. I think the only thing that kept us sane was our daughter, who was seven years old, had a routine. That forced us to get up, shower and drop her at school. When she returned, she needed some help with her homework or she wanted us to play with her. If it was not for that routine, I suspect my wife and I would have crumbled. What was seemingly innocuous child play to us was not what it seemed. Nikhil was stimming when he flapped his hands. His mouthing of objects was a sensory issue. At night, while Nikhil slept peacefully, I would gaze at him and wonder how life had changed so abruptly for us. Just a week ago, he was a normal child to us, full of play, now everything had changed and every action of his made us wonder if it was normal or linked to some disorder.
We met the Geneticist first, she was very nice. She suggested a number of tests for genetic and metabolic disorders. We then met the Neurologist who after examining Nikhil suggested we wait for the results of the genetic tests. While he was noncommittal, he mentioned that Nikhil might have benign hypotonia. That gave us a spark of hope. At this point in time, we were praying incessantly. I hoped that this was a passing phase and that Nikhil would catch up with his milestones. All my previous troubles seemed to be trivial compared to this and I told myself that if Nikhil was to escape unscathed, I would change the way I lived, to be always content with what I had.
We had told our parents about our doctor’s fears. I have not really discussed this with them, but in retrospect, I don’t think they got the gravity of the situation. They were very confident in their faith and they assured us that God would take care of everything. If they were worried, they did not show it. It was hard for us. We were away from family with no support. We had no diagnosis for Nikhil and besides confiding to a couple of close friends, we did not tell anyone else since we were really not sure what the matter was with Nikhil. At this time, we would be invited to parties where Nikhil’s peers were walking and starting to talk. Nikhil had just about started to roll, he had not yet started to crawl or sit up. Those days were hard, but we had hope. My wife and I reassured ourselves that everything would be fine and this was just a bad dream.
The results of the tests started coming in. Fragile X – negative, Array CGH showed no abnormalities, metabolic tests were fine. Naive as we were, we exulted as each result came in. In our mind, there were a set of finite possibilities and as each possibility was ruled out, we thought it meant, we were free and clear. Our pediatrician was most supportive and one day he invited me to his clinic after work. He made a couple of pertinent points that day. He asked me not to focus on statistics, since if Nikhil was the statistic, then a one in a million probability was moot. Secondly, he advised me to focus on my marriage. One in two couples get divorced in this country but when there is a disabled child, I think he said it was something like 3 or 4 out of 5. At this point, it was really the two of us to support each other. We did confide our fears to our respective siblings and they were very supportive, but we were geographically far apart.
There had been no smoking gun so far. We had noticed that Nikhil would sometimes jerk his arms or legs. We mentioned this to the neurologist who advised us to wait. We found Nikhil unresponsive for a few minutes one morning, his eyes were rolled up and we could see the whites of his eyes. The neurologist thought he was in deep sleep. During Thanksgiving, Nikhil had high fever and he suddenly had a seizure. We rushed him to an emergency clinic, he was there for a couple of hours and we returned home. It was attributed to a febrile seizure. Then on our way back to the airport after a visit to NJ, Nikhil just blanked out in the car. He stiffened, his eyes wide open, unblinking with an expression of fear, he just stared ahead. It was January, my sister-in-law pulled the car over to the shoulder and I rushed to the back seat while my wife tried desperately to elicit a response from Nikhil. After a harrowing few minutes, he came to again. We rushed to the ER where they examined him and found that he had an ear infection and the episode was attributed to that.
On our return to Florida, we took him for a scheduled MRI. I called my brother from the hospital while Nikhil was undergoing his MRI. The neurologist had told us that the MRI might be clear, and I was confident that it would be and I told my brother so. In my mind, this was one more thing to strike off from our list, the last possibility that would indicate that Nikhil was fine. We returned from the MRI and the next day we got a call from the neurologist. He said that they had found that Nikhil had global atrophy in both hemispheres of his brain. I asked him what that meant and what would be affected. He said it was hard to say. I hung the phone down and then I knew that there was nothing benign about Nikhil’s condition. The next day Nikhil had a grand mal seizure. it lasted 18 minutes. I clumsily tried to administer the diastat, it had no effect. Our neurologist had advised us that if Nikhil had a seizure, we had to wait for 3 minutes and call 911 if it did not subside. I dutifully waited 3 minutes and called 911. The ambulance got home in about 6 to 7 minutes. Nikhil was still convulsing when the medics came home. He was taken to the ER, it took him close to 4 hours to open his eyes and respond to us. While at the hospital, he underwent a 24 hour EEG. It was hard to see this little guy, all of 16 months with a headful of leads, unable to sit up, confined to a crib. When the leads were taken out and my wife picked him up, he kissed her repeatedly. Nikhil was put on anti-seizure medication. His jerky movements stopped immediately – they were myoclonic seizures. Nikhil also learned to sit up by himself.
In the meantime, we had started Nikhil on his therapies. Speech, Physical and Occupational therapy. My wife drove him every day for his therapies. We had anticipated taking Nikhil to “Mommy and me” music classes and not to therapies. We also made our round of doctors – Neurologists, Neurosurgeons, Endocrinologists, Ophthalmologists and so on, all pediatric of course. Nikhil had started to commando crawl around the house. He would drag his left foot but still get around. Occasionally I would be at the kitchen counter when I would feel a pair of soft wet lips on my feet or ankle. Nikhil would have crawled into the kitchen and would be kissing my ankle wanting to be picked up.
It broke our hearts that Nikhil could not speak to us to communicate his smallest needs. He could not tell us he was hungry or thirsty or needed to be changed or just wanted to be picked up. But there was one thing he did even then, he was very affectionate, he kissed us and loved to be cuddled. The first year after the diagnosis was the hardest for us. We ran the gamut of emotions – fear, hope, grief, anger, resentment and finally acceptance. We also started letting friends and relatives know, our parents had counseled us not to let anybody know in the hope that Nikhil would recover and they did not want him to be stigmatized. Their intentions were noble but it put us in an awkward position. People were very supportive and did their best to comfort us and mostly tried to offer us hope. Surprisingly a common refrain was “God is trying to test your faith”. This was no doubt meant to comfort us. It was, however, the most inane thing I had heard. A seemingly omnipotent and omniscient god was so insecure that he would physically hurt our child to test our faith. To what avail? If we passed the “test,” would Nikhil be cured? If we failed the “test”, would Nikhil be cured? Was he an experiment in the great “laboratory” of the Universe? That was the anger and resentment phase.
It has been over 6 years since Nikhil’s diagnosis and we have come along a fair bit. We moved to Massachusetts since we felt that he would get better services and our daughter a better education. We’ve been humbled by the dedication and patience of Nikhil’s teachers and therapists. Theirs is a hard job with no immediate gratification. They do not see the results of their work for years or sometimes never at all. When Nikhil sat down that day, it has been two years in the making, with the therapists observing and working diligently with him to help him sit down.
Things have changed personally for me. In the past, I would hear about Autism or special needs on NPR or read about it on news sites. It was a momentary glimpse into another world, just a fleeting one before I returned back to my own life. Having a special needs child has made me realize that there is a completely different world out there. It is a world that you do not understand unless you live it. It impacts the entire family – physically, emotionally and financially. I’ve come to realize that I do not have the answers for everything and I’m content to accept that. I do not worry about an afterlife or the meaning of life – if I can’t understand what my child is trying to tell me, all that other stuff is inconsequential to me. I’ve realized how much we take things for granted – walking, running, talking, reading, writing – seemingly run of the mill mundane stuff that can yet prove insurmountable to other people. I’ve learned patience, though I wish I had a lot more. I’ve learned to worry about things under my control and I try not to worry about things that are not under my control, though that is easier said than done. I’ve also learned that there are some things in life that one cannot run away from.
There are some battles that I can choose, there are some that I can avoid and then there are some that I do not choose but cannot avoid either. It has increased my appreciation for my wife, for the way she handles Nikhil and the love and affection that she showers on him and the way she deals with him patiently. When Nikhil was initially diagnosed as being on the Autism spectrum, she had feared that Nikhil would shun physical contact and would not want anything to do with her. Her fears have been unfounded. Nikhil is the most affectionate seven-year-old I know. His day begins with a hug and kisses for her and ends with the same. He is a Mama’s boy. While we sometimes wonder why and how this happened, we are also acutely aware that there are children who have more debilitating disabilities, who are dying of cancer, starvation or war. The pain that their families suffer is hard to imagine. Yet there are a lot of people who handle their hardships and tragedies with faith, grace and fortitude and we admire them for that. We do not look at ourselves as victims, we just accept the fact that stuff happens and we don’t know why.
And what of Nikhil himself? He is a happy child who starts each morning with a bright smile. He covers his mommy with sloppy kisses as she dresses him to school. He is keen to get into his school van and enjoy the drive from his vantage position. On his return from school, he has to inspect his toys, perhaps he suspects that his mom plays with them while he is away at school. When I return from work he demands total attention from me and we play our own games. He speaks incessantly to us in his own language. He has a sense of humor, he comes up behind me, taps me on my back and plays “peek a boo” with me. He loves van rides, he can sit for hours in his car seat looking out of the window, passing comments in his own tongue. He has a great sense of direction, he knows we are heading home when we are a couple of miles away from home. He loves music and listens to his nursery rhymes with rapt attention. He likes to sneak into his sister’s room as she plays the piano and when she plays “One little, two little, three little Indians” especially for him, the look of rapture on his face is a joy to behold. He does not have an ounce of malice and has never raised his hand in anger or frustration. Occasionally, people tell us that they admire us for our patience when it comes to Nikhil. It shames us to hear that, for it is Nikhil who is patient with us. He can understand us to a large extent but our inability to understand him probably frustrates him greatly, yet he does not give up or get angry with us. He lives in the moment and he truly enjoys the little things in life. He can be persistent when he wants to but will also give up without any qualms when something does not interest him.
I sometimes wonder what goes through Nikhil’s mind, I’m sure there are a million ideas and thoughts waiting to find expression. I wonder if he feels resentment for what has happened to him. I wonder if he will ever be able to ask me why he was dealt such a hard blow and I wonder what I will answer him. I wonder what will happen to him when my wife and I pass on. For the moment, I will take the little triumphs and savor them. As Nikhil sits down, he looks up nonchalantly and wonders what the fuss is all about, and as I look at him, I realize that his name is completely appropriate – he is resilient and he does complete our family.