down syndrome sri lanka
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down syndrome sri lanka

Our Daughter “Jinendhi”

Jinendhi (aged 30 years now.) was born 8 years after my third son. After having 3 healthy sons, my husband and I were very happy, for we thought that it might be a girl as we always wanted.
After the full-time period, our daughter was born in a private hospital. On inspection by a pediatrician, I was not very satisfied, as he vaguely said that the child would be weak and developmental delays should be expected. Being a high school Biology teacher I was really worried.

As soon as I got home with the baby I pulled out the doctor’s reports and read them. It read “Trisomy 21?“. I was devastated! I felt that the whole world was whirling around me. I cried and cried for days, why should such a thing happen to me? How many times have I explained this phenomenon to my Biology students in lessons on Genetics, and now I am an example of such a situation? Anyway! I thought, I am her mother and it’s the two of us as parents who should bring her up. After bringing up 3 healthy sons who were 14, 12, and 9 years old by then, bringing up a weak child would not be an easy task.

The sons were performing well in their school work and I couldn’t neglect them. Anyway we took the challenge to educate all four of them. Jinendhi showed developmental delays, and difficulties in understanding commands, and did not show any interest in whatever happened around her. Teaching her to respond to commands took much time which required patience on my part.

Her intellectual disability discouraged me many times when trying to get her to do some tasks like picking up a pen that had dropped or asking her to bring a ball or blow up a balloon. It was extremely time-consuming. I had to prepare for my lessons and see to my sons’ home work, especially the 3rd son who needed my help very much. As a mother, if I don’t see to my children’s needs, who else will?

That was my feeling, and this inner feeling kept me going forward. Jinendhi sat up on her own at about 9 months of age and started walking at 16 or 17 months of age, sensible words like “Amma” were uttered at 2 years of age. Those were the happy days in our family, and the brothers came to understand gradually that their sister was a differently abled child. When Jinendhi was about 3 years old we got her admitted to a Montessori where there were about 30 normal children, but after about 5/6 months we learned that it was not of much use to her.

When she was 4 years old, my husband managed to admit her to a government school that had a special unit for differently abled children. The teacher involved was understanding and knowledgeable in teaching such children as well as keeping us, parents informed. On her instructions, I managed to improve her fine motor skills like collecting lile grains, pins, pebbles, and scaered coins, and using a pair of scissors to cut paper, to make her fingers more mobile. Working with Play-Dough was one thing she loved very much.

She was also given washed sand to spread and write leers on it. With the help of the teachers, Jinendhi learned her Sinhala alphabet and gradually started to read and write. We got used to geing her help by telling her whatever we wanted repeatedly. Also, we were advised to give her a pet to care for. We bought a Doberman pincher puppy dog for her to play and talk with. She used to give commands to Britto the dog and it was very friendly with her bringing balls when thrown and running about in the house. I used to brush and bathe Briotto in her presence, getting her help to scrub it, shampoo it, and wipe it with a towel. Such work helped me to train her in her personal cleaning and sanitation.

Training her to wash her underwear was one thing I thought she should learn as a girl. Up to date, she does it before changing to her nightwear, which is a relief for me as she is a grown-up girl now and her personal hygiene maers much. She was given a closet to keep her clothes and accessories like lile bags, where she would separate out and keep her clothes folded up.

As usual with children with DS she has to repeatedly explain something that is new to her, and also they learn a lot by observation. Cleaning the toilet seat if there is spilled water, using the wash basin and cleaning it, puing used toilet tissue into a bin and wearing her clothes in private are some such things I managed to teach her. She is very fond of washing, and to date, I have not been able to get her to close a tap without wasting water.

All our three sons got married within one and a half years and to add to that the 2nd and 3rd brothers had to leave Sri Lanka for their postgraduate studies. By that time she was friendly and fond of the new sisters-in-law. Their departure would have made her sad and it was a situation Jinendhi could not bear. We never expected her change. Matters worsened when her eldest brother brought home his first baby. We were too happy to receive our first grandchild and did not notice Jinendhi’ s indifference. She responded with aggression and frustration. We never expected her to show such emotions. She would sit down on a couch and not move about even to brush her teeth or change into her pijamas. She had asked our domestic helper whether she is not the “baby” of the house any more. We had to seek the help of a psychiatrist .The consultant prescribed antidepressants which after administration brought her back to normal.

Jinendhi attends to her daily routine of work, though not self advocative. Both me and my husband are retired from government service, with only the 3 of us at home. She is an aunt of eight nieces and nephews and Jinendhi is fond of them. Being almost of their mental age (all of them are between 9 to 11 years) she plays with them and enjoys being with them. She gets on well and interacts with everyone in the society

– Written by Mrs Sunethra Galgamuwa

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