Part 1: My Journey

I found myself sitting on the floor of my living room. The TV was switched on and I had a bowl of ice cream in my hand. Was I awake or was I dreaming. If I was awake, when did I fall asleep? Did I at all fall asleep? What time of day was it? Was it morning or night? I was confused. I looked out of the window. It was dark. What time of day was it? I looked at the clock and I realised it was past midnight. I could not even remember, what I had done the whole day. The more I forced myself to think, the more scared I became. I had absolutely no memory of the events of the day or evening that had led me to that moment.

Even in my confused state of mind, I knew I was hurting. I was depressed and stressed out. I wanted to kill myself. All this was because of my son.

I hardly slept. I would remain awake, most nights, either thinking or crying, which led to sleeping disorder. I hardly ate. Food did not taste good and I did not eat at the right time, which led to eating disorder. I put on weight, a lot of it. There were days, I did not even feel like getting out bed.

The whole day I spent, thinking about my son, talking to him. All the activities he did in therapy, I would make him repeat the same at home. My living room looked like a sensory den.

So, one night when I couldn’t remember, anything I had done the whole day, I knew I had to change. But that night was not the worst moment in my life.

Seven to eight months before that, during a routine visit to the Paediatrician Dr Tushar Maniar, we were told that we need to take an appointment with an Occupational Therapist. I had never heard of an Occupational Therapist. Our paediatrician pointed out that my son did not like being touched and he did not respond to his name been called out. He did not make eye contact when spoken to. We needed to get his hearing tested by Dr Sujata Gandhi and his eyesight tested by Dr Neepa Thakkar.

First, I got his eyesight checked, there was nothing wrong with his eyesight. Then I took an appointment with Dr Sujata Gandhi at Nanavati Hospital. On that day, my son was unhappy, he kept crying and kicking. Dr Gandhi, heard me out and she explained the tests she would conduct. She asked me to sit outside the chamber in the waiting room.

I waited and waited. There was nobody around me. It was very quiet. Sitting all by myself, I knew, I knew, I knew. As a mother, I had felt for some time, something was not right with my son but honestly, I was too afraid to find out.

Finally, she walked out with my son. She told me, she would provide a report later but she had worked with a lot of Special Needs children hence, she knew one when she saw one. Nothing, could be said conclusively, but we needed to get him evaluated by an Occupational Therapist. Worst case scenario, he was on the Autism spectrum, and the best case scenario, he was just a sensitive child.

I sat down, I could not pay attention to anything she was saying. That word Autism. Though I knew very little about Autism, I had a bad feeling about it. I wanted to scream, shout, cry. But I just sat in my chair. The ground beneath my feet had caved in. I had a sinking feeling, as though I was falling into an abyss. My hands and feet were cold. I was numb.

Once, the doctor left, I held my son’s hand and walked out. My legs were shaking. I found it difficult to walk, so I walked slowly.

I reached my car, sat down, closed the door. I called my husband but could not talk to him. I wanted to talk to someone so badly. I called my mother, her phone rang and rang and rang. Finally, she answered her call. I wanted to talk to her, tell her everything but the moment she answered her call all I could say was “ Maaaaaaaaaaaaa” and I started crying.

I remember that was when it happened. I felt this pain, I had never felt before and all I could manage to say was “ Maaaaaaaaaaaa”. That day was the worst day of my life.
No one should ever feel such pain, no one should ever have a day like that. My world had turned upside down.  My son looked at me. He did not know what had happened and I did not know, whether he would ever understand.
Posted in Autism on March 07 at 11:32 AM

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