The trials and tribulations of bringing up a Special Needs child are severe in India. Other than the problems of grappling with everyday needs of the child, one has to deal with schools that are insensitive to the development of such children. Bina shares the story of her grandson. It is perhaps fine to lose a few battles to win the war! From this week, we introduce a column, Lyrical Life that deals with paroxysms of emotions and the many songs of life, exclusively in Different Truths.
My grandson was born, beautiful and chubby with red lips like cherries. His marble black eyes twinkled like stars. He had a sweet temperament and slept peacefully even when the music blared loud. He was always hungry, even before he finished one spoon of cereal, his mouth opened like a goldfish for the next one. Everyone who saw him wanted to hug and cuddle him. At three months when we took him for his regular check-up the doctor said “The baby seems to have a mind of his own. He is growing well.” We were happy.
A month later he had not yet turned over. I can recall the details as if it happened yesterday. The day she was visiting the doctor I was in Mumbai. I was anxious and eagerly awaiting her call. When the phone rang my heart was beating fast.
Her voice choked with sobs. “Amma, the doctor says he may not sit or stand and may end up in a wheelchair.” My heart broke into a thousand pieces.
I wanted to be strong and consoled her, “Let’s consult Dr. Vrajesh Udani, he is one amongst the most experienced pediatric neurologist in India. I can assure you that he will walk and will be fine.”
I lay down on the bed and cried. My son held my hands tightly and comforted me. “Amma, we are all there together.” I picked myself up, wiped my tears and decided we were going to work hard on this. My eyes were misty when I said, “You are right, we have to hope for the best and not give up so easily. Hope is the only thing that keeps us alive and takes away our grief. They say a person can be truly happy with just three things, someone to love, something to do and something to hope for.”
My daughter arrived the next day from Bangalore. I had taken an appointment with the doctor. At the doctor’s clinic, I felt at ease, as if I knew he had the magic wand.
Wiping all the doubts from our face he confirmed “This is a case of hypotonia (low muscle tone). There is no medication but therapies will speed up the progress.”
“Doctor, will he sit, stand and walk?” she asked in a voice that shook with emotion.
“Yes, he will, if you focus and work hard on him. The maximum that can happen is, he may not be able to run fast.”
We heaved a sigh of relief. I thought, “How it matters if he cannot run?”
We started our therapies at Hinduja Hospital, Mumbai, which is a multi-speciality hospital. It was an hour away from our home. Every single day he underwent speech therapy, physiotherapy, and occupational therapy. I kept watching him struggle, but he was not giving up, even for a moment. He fell many times, lost his balance, hit his face with a big thud. A scream followed the crash. He would bleed from his mouth but that did not deter him. Before the raw wound healed he had another. Yet he never gave up, his smile was always back on his face.
A year later, on a bright sunny Sunday morning, I was sitting on the rocking chair, reading a book. Touching me lightly on my shoulder he said, “Grandma look,” I couldn’t believe my eyes. He was walking without any support.
When he was three, he bubbled with life and had a great sense of humour. The sweet ring tone of my mobile would often turn into a frog croaking or a dog howling. He was small and vulnerable. He had normal IQ which made it all the more difficult because he was aware of everything. I quit my career when I was doing well because I wanted to give them my time. His mother needed the career.
He got admission in LKG in a good school near our house. He could walk but needed help climbing stairs, as his classroom was on the first floor. In five months he climbed the stairs himself. When he was in UKG I had gone to pick him up when the teacher said “Your grandson is slow in writing, the counsellor has left. You have to seek admission elsewhere.”
I stood in shocked silence for a moment then said: “But the admission in other schools is closed.”
The school coordinator was unemotional. “You all must be used to running around to different schools, so you can do this one more time.”
I believe everything happens for the best, otherwise, we would never have found the best school. It’s one of a kind but was located in Lower Parel, which was seventeen km away from our house. He got admission in the first standard. I used to drive him down to school. In the evening, I drove down again to pick him up. It affected my health. We employed a driver for taking him to school. He was naughty like any other child and was full of joy. One day, I had just walked in feeling good after going to the gym, when I heard him say, “Grandma just come here. He was pointing to an advertisement in the newspaper. “Do you want to do this? he asked. Looking at the caption, “Flat Tummy in 4 hours,” I laughed loudly. But like other children, he had no time to go down and play. It was just therapies and school.
I spoke to parents of children at the school and realised there were only one or two schools for children with Learning Difficulty. I decided to do the “Citizen Journalist show” with CNN-IBN highlighting their problems and creating awareness. The brilliant video, “A granny fights for her grandson’s special education” was made. It had an impact, a school came up close to our house, just around the corner. It was a miracle.
He improved day by day and could not only run but swim, and cycle. One fine day, I stood by the window watching him swim, I thought “From the time he didn’t turn over to the tall and handsome boy he has grown into, what a journey it has been! He is fifteen and is taking the board exam. Even when the world says, “Give Up,” hope whispers, “Give it one more time.” To achieve anything all we need is a focus, hard work, determination, and dedication. All things are possible for those who believe.
Photos by the author.
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