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My son Alan was born with Down's Syndrome

Maria Priya, a lecturer at Loyola College, with her son Alan at their residence in Chennai. Photo: Photo: Shaju John  

I was 33 years old when Alan was born. He had a flat nose, almond-shaped eyes, and short limbs. He looked like a doll. I felt blessed. A few hours later, I was told that he had Down’s Syndrome and was born without an anus.

I wept uncontrollably. But even before I could absorb what Down’s Syndrome meant, he was whisked away to a neo-natal intensive care unit for his first pull-through surgery. His second and third were performed at intervals of a few months each. He was the first baby to undergo laparoscopy in Chennai under the guidance of a group of surgeons from Switzerland.

Everyone, including doctors, told me that I would not be able to cope and that life as I knew it would be over if I kept Alan. But I refused to give up my baby and vowed to raise him myself.

They were wrong: having Alan is the best thing that has ever happened to me. He changed my life for the better; he made me a stronger person.

Life with Alan was a daily, emotional roller-coaster of disappointments and successes. It took effort, time, dedication and patience to raise a child with an extra chromosome. I had to learn to become a mother with incredible patience but also a nurse, a physiotherapist, a speech therapist and a special educationist — all this while attending to household chores and working to earn my daily bread. My husband and I separated when my son was a year old.

I started reading about Down’s Syndrome and about raising a child with special needs on websites and in books. I sought advice, information and tips from local groups and organisations. Everyone suggested that I start an early intervention programme that integrated special education, physical, occupational and speech therapy, but it cost almost four times the amount needed to raise a normal child. I was already spending large amounts of money. There were hospital bills almost every month; every time Alan fell sick. I soon went bankrupt.

At this point, when I was at the end of my rope, I met Dr. Shanthi Rangarajan, a paediatrician and neonatologist.

Her tips helped me take Alan up to a new level. She took special interest, and her optimistic words that a “mother is the best therapist” transformed our world.

I found a new confidence, and discovered the innate capacity I possessed to bring up a special child.

I put Dr. Rangarajan’s advice into practice and gradually redesigned Alan’s life. For instance, take his speech. Alan’s language acquisition and vocalisation were very delayed, and he was recommended speech therapy. Each visit was exorbitantly expensive, but Alan refused to even sit for the sessions. I stopped the therapy. With the words “The mother is the best therapist” in my head, I sat every evening with Alan in front of a big mirror and asked him to imitate the movements of my mouth — my jaws and swirling of my tongue — while I spoke.

Finally, we won. It was a great achievement for me when in a few months he started saying a few words, then a few simple sentences. I took similar efforts to help him with every milestone. Doctors had told me he would grow to be a dependent child unable to walk or talk. But I’m proud to say that he is an independent boy. I taught him to write, to read, to express emotions, to do his morning activities, to follow and execute instructions, welcome guests, recite prayers, handle telephone calls, and share household chores with me like washing dishes, folding clothes, and cleaning the house.

From infancy, when he was about eight months old, I exposed him to alphabets and words through flash cards. Everything I did was practical. For example, I took him to the market almost every day to make him familiar with the names of vegetables and fruits. I used puzzles, videos, educational toys and outings to help him learn. Today, he can do his homework on his own, study, write questions and answers and do tests without the help of a scribe.

Alan is 14 now. My latest experiment with him is cooking. He now knows how to make coffee, tea and even dosas. He swims and plays badminton. He attends computer classes.

Having Down’s Syndrome is not going to stop my son from achievements or from leading a wonderful life. I want Alan to prove that children with special needs are not different from or less fortunate than other children.

As told to C. Jayanthi.

C. Jayanthi, former journalist, is an assistant professor at Loyola College.

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Printable version | Nov 28, 2020 5:17:12 PM | https://www.thehindu.com/features/magazine/My-son-Alan-was-born-with-Downs-Syndrome/article16442874.ece

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