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|December 19, 1997||
What do you do when you are told that your new-born baby has Down's Syndrome? When Indeera Chand learnt Radhika, her youngest daughter who was born in 1972, was Down's baby, she desperately hunted for stories from other families in similar circumstances. She found nothing. Nothing at all was written in India at that time. The subject was taboo, barely acknowledged, let alone written about. Hence, her book -- Climb Every Mountain: Radhika's Story. Rediff On The NeT presents an extract...
Once every week she paid us a home visit. She would observe family dynamics, help sort out any difficulties, guide us in improving our handling of the children, and show us all how to teach and play with Radhika so that, gradually, we were able to use the same techniques at home as she did in her playschool. Radhika therefore got fewer and fewer contradictory instructions which was a great help to her progress.
Dina showed Sandhya and Aarti how to teach Radhika to play 'follow-the-leader', 'catch', 'throw-and-kick-a-ball', go down the stars with alternating feet, climb the monkey bar and hang from it, walk along a narrow brick path while keeping her balance, jump, skip and hop. The girls thought this was great fun and thoroughly enjoyed teaching their little sister. These activities encouraged the learning of gross motor skills, as well as increased body image and balance.
Dina also discussed and advised on good eating habits, supervised meals and taught self-care skills like independent toiletting bathing, dressing and putting on sock and shoes. It would have been easier and quicker just to do all this for Radhika ourselves, but the aim was to make her self-sufficient and independent. She was slow, maddeningly so at times, but we always had to encourage her and be patient ourselves.
We, too, learnt how to break every activity into simple single steps, teaching her one step at a time, repeating it again and again until learnt, then moving on to the next. Persuading, encouraging and rewarding; on and on, every day, day after day. Dina was the force and motivation, and Radhika's slowly acquired skills were our reward. Dina's insistence on involving the whole family, the entire household, made the burden lighter for each of us.
Every evening Radhika would go down into the garden with her sisters to play with a group of children from the apartment building. Often she would sit on the sidelines and watch, partly unsure of herself, partly lazy. She would need to be coaxed and cajoled, and then she would join in actively, everyone helping her, everyone enjoying showing her how. She was lovable and friendly, hence much fussed over by all her sisters' friends - fortunate for her and us that she was a part of that young group whose parents did not mind Radhika's inclusion.
We spoke openly about her disability, and treated her as normally as we could. She was being trained to fit into family and society, and we encountered no hesitation, let alone rejection from neighbours or friends. I realise that this was rather unusual then, and perhaps even now, many years later. Did our own open, normal behaviour help in this general acceptance? I think it had a lot to do with it. Sandhya and Aarti were not embarrassed by her as her personal development and social skills were, on the whole, adequate and acceptable.
However Radhika was not yet dry at night. She was over three. Dina advised us to stop putting her into nightly nappies and plastic panties. She felt this would become a habit and not be easy to break. We had to potty her before putting her to bed, telling her firmly she should not wet her bed. If she did wet her pyjamas, she would wake up and I should then reinforce the potty bit. We had a few nights of bed wetting and then never again.
Children with Down's get into 'ruts' very easily. It is important to get them into acceptable 'ruts' or habits from the start. This, too, we learnt from Dina. Radhika was taught to brush her teeth, and do this everyday after breakfast and dinner. She never forgets. She used to kiss everyone 'goodnight' - family as well as friends. Dina advised against this, as it would become a habit she would neither be able to change later when kissing would not be appropriate, nor be able to discriminate between whom she could and whom she should not kiss. We should therefore get her into those habits that would be good and appropriate for her as a grown-up woman.
She already had a fairly large vocabulary in Hindi and we were anxious about the changeover. We kept a notebook in which we wrote all the old words she relearnt in English and all the new words. Sandhya and Aarti kept track and taught her. The list grew and grew, and we finally gave up keeping track or being anxious when, from about thirty words, she had more than doubled her vocabulary.
Rereading all Dina's assessments, I relive all the effort that went into her early training. Dina discovered early on and recorded a great desire and zest in Radhika to do things herself. This encouraged both Dina and us, and Radhika's progress was quite remarkable. However, gross motor skills, body image and balance came quicker than fine motor skills. Her vocabulary increased by leaps and bounds, her perceptual skills slowly but surely, though conceptual skills came very slowly. Self-care skills improved considerably. She was attempting to wash herself after toiletting, and washed and dried her hands carefully and well.
Excerpted from Indeera Chand's Climb Every Mountain: Radhika's Story, HarperCollins Publishers India, 1997, Rs 145, with the publisher's permission.
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