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...Radhika

Radhika's painting

Dina encouraged her to paint. Radhika did not like to get her hands messed up, but Dina was able to show her how to get them clean again. They hand-printed, finger-painted, used large sweeping brush strokes from left to right, up and down and round and round. Each movement and direction and colour was named again and again. Radhika began to enjoy this activity and we still have some of her earliest pictures.

They tore and rolled and stuck coloured paper balls, thus developing palmer and pincer control and producing pictures as well. Since encouragement and praise were so necessary, everything she did was displayed on a board in her room.

Each specific skill and concept was taught purposefully and with patience and joy. For instance, blowing bubbles and drinking from a straw helped breath control and articulation. The preparation for reading and writing skills was also practised until learned and internalised. As her experience with new and 'formidable' activities grew, so Radhika's willingness to try increased. When she tried, she found she could succeed and success led to confidence, a greater interest and more self-motivation.

Dina, in her report on Radhika in November, 1975, found her "always willing to try" but "withdrawn when frustrated," able to "separate from parents after explanation" and "perseverating with her success experience less than she had six months earlier." To perseverate means to repeat an action for an excessively long time. Dina explained that children with disabilities continually repeated an activity they were successful at, not wanting to move to another for fear of failure. However, by December, 1976, she had made "remarkable progress, her personality had blossomed, she was very alive to her environment which was no longer threatening and she shared a very healthy and accepting relationship with her family members."

At three-and-a-half, the objectives for Radhika's training were to develop a positive personality and the competencies of a three-year-old child. She had to be disciplined appropriately in her reactions to family, adults, peer and younger children. She needed to be reinforced in her eating and other self-care habits and to distinguish acceptable from unacceptable behaviour. We had to help her develop her body image and confidence in moving around so that she would be less afraid and more secure in handling herself in relation to space, objects and balance.

Radhika was taught to follow simple instructions. At first one command, then gradually two and three. She learnt to pour water into glasses and carry a few plates at a time. She was extremely careful and hardly ever spilled water or dropped a plate.

Radhika made good progress in her one-and-a-half years at Dina's nursery. This was continually reinforced at home. It was therapeutic for me too There was so much to concentrate on and the rewards were there to see. Earlier misgivings about not knowing what to do just melted away. On this front, it was a period of calm and healing.

Radhika's first swimming success

On the medical front, though, we learnt from Dina more about all the areas we would have to look after especially carefully. Apart from hypotonia, children with Down's (syndrome) have weak air passages and get bronchitis easily. Playing in water after and swimming were excellent, but we had to guard against chills. Exposure to too much sunlight was harmful. To quote Dina in full: "Physiologically, this child is like an unfinished human being. A tendency to catch colds, weak tonsils and adenoids, weak digestion, slow metabolism, delicate skin, poor circulation, poor dentition, thick tongue, high palate, malformation of bones, underdeveloped tear ducts and a tendency to myopia. They go through a long babyhood, hardly much childhood and age rather quickly."

This formidable list hung like a pall over me. I had read somewhere that they were prone to diseases of the blood, particularly leukaemia. This slack muscle tone, high palate and thicker tongue made soft foods easier to eat. Radhika moved them around in her mouth, chewed a little and was able to swallow them fairly easily. Dina got her to chew fresh carrots and apples every day as these were good for her gums and teeth.

In 1976, at the age of four, she had two acute attacks of tonsillitis and recurrent attacks of diarrhoea. We needed a blood test, and I took her to the Breach Candy pathology department. She was apprehensive. No amount of preparation made any difference. When our turn came, I took her in and sat her on the bed. She was terribly afraid. I tried to explain how it would not hurt, she would hardly feel it and it would take just a second.

The male technician got his syringe ready. He offered no word of encouragement or understanding. Her fear and panic increased. She would not let him come near her. She began to scream and kick and fling her arms about. He threatened, "I shall send your mother out of the room if you don't cooperate." This increased her panic and shock, and mine. No amount of comforting words from me helped allay her fear. Finally he called in another male attendant to hold her down and told me to leave the room. I did, and the blood was forcibly taken while she shrieked and screamed.

I was stunned by this experience and Radhika shocked by the harsh treatment and the use of force. Surely there must be a better way to deal with children's fears? No one had ever threatened her before. Radhika's fear was now compounded with distrust and shock. I hated myself for allowing the child to have an experience which has left her distrustful and fearful of all doctors, hospitals, test and injections.

She cannot bear the fear of pain, let alone the pain itself. Sometimes I feel she has a sixth sense about medical interference with her system not being safe for her. I have developed a similar fear about myself. I have never liked to be poked or prodded, and do not like to put her through anything that is not essential. However when medical assistance is necessary, Radhika does not understand, nor is she troubled, for example, by the thought of teeth rotting and causing more pain than a simple extraction. I have learnt to respect her wishes most times but wish she was easier to convince when medical attention is necessary. This has been an added burden on top of trying to remember, all the time, all the things we must do, and all that we must not do.

Dina had warned us early on how Radhika would mimic gestures, words looks, behaviours, etc, and that therefore we should all be careful with ours, since she would parrot without discrimination. In each case we have found Dina correct and wise. On the one hand, knowing this has meant a greater burden of responsibility to follow the rules, but on the other, the results Rahdika has achieved have been compensation enough. I remember my father's letter to me on my eighteenth birthday, telling me we have to work hard and pay a price for everything we want. We don't get something for nothing. How true, but what a hard way to learn this lesson!

In many respects we were a close, happy, normal family. Radhika's presence was a challenging and cementing one, involving all of us in her upbringing. The relentless struggle to make Rahdika's an independent and valuable life gave the family a very real joint purpose and direction. We were in the struggle together, sharing the difficulties, the successes and the joys of her personality as it began to flower…

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Excerpted from Indeera Chand's Climb Every Mountain: Radhika's Story, HarperCollins Publishers India, 1997, Rs 145, with the publisher's permission.