A Special Day With Down Syndrome

Time spent at the day care centre of the Down’s Syndrome Association of India (Tamil Nadu chapter) can be a lesson in humility and gratitude.

The centre, headed by Dr. Rekha Ramachandran and serviced by about ten staff members, helps children with Down Syndrome (DS) through their daily activities. Their day is planned taking into consideration the abilities and challenges of children with DS. Parents drop off their wards here in the mornings and, after a day filled with fun learning activities, take them back home to their families in the evenings. 

The typical ‘day’ here begins at 9.30 am and involves sessions of prayer, yoga and outdoor games. The children are self-sufficient in personal hygiene too; they are all toilet-trained and the girls have learnt to deal with the physical demands of puberty.

The centre has an academics section where students learn basic language and arithmetic skills. Besides this, the centre also emphasizes on skill-development.

Vocational Training for Down Syndrome Children – Our next stop is their baking section, a vocational skill that the children can use in the future for gainful employment. Here, about fifteen to twenty varieties of cookies and biscuits are made everyday, and the orders they receive often run into thousands! A specialty of this bakery is the chilly-garlic cookie. Apparently it’s quite a hot and sweet delight. The main ‘chefs’ at this home-run industry are Divya, Shailaja and Sandhya. When we arrive, Sandhya is busy, shredding dates into tiny pieces. All three of them are familiar with the regular ingredients of the baking process. It’s quite surprising that the three baking experts can tell when a cookie is done just be the aroma emanating from the oven. What surprises even more (and also makes me feel a little guilty!) is when I am told that none of them ever taste a single cookie without being asked to. I realize that the simple activities involved in this process of baking defy several preconceived medical notions of what children with Down’s cannot do – they cannot focus, their fine motor skills are grossly inadequate, and they lack co-ordination. All that comes to zilch right here.

Shailaja also excels at making paper bags. Executed with dexterity, neatness and unwavering concentration (she ignores the constant banter that surrounds her), Shailaja cuts, folds and pastes while also explaining the steps involved in fashioning the bag. The center hopes to be able to sell these bags to up-market shops. However, there are no takers as yet.

Therapy Area - Upstairs is the therapy room, where physical rehabilitation is undertaken to straighten the children’s spine, muscles, and bones. On the ground floor are young boys who feel they are “old enough to catch up with serious studies”. Their classes are more advanced, and subjects more challenging. At the weaving section, girls interlace strands of cloth into warps and wefts to make floor mats. Again, an activity that requires unbroken spans of concentration and focus.

Support & Counseling - Anu, a mother of a 3-month old infant with DS, relates her experiences when she was first informed of her baby’s condition – the fear she initially felt, and then the sense of despair and hopelessness that set in later. What helped her through, she concludes, is the reassurance and counseling she received from Dr. Rekha. Though the anxiety remains, she has learnt to accept the situation unconditionally.

The tales are similar to all parents here, maybe because the problems are similar too – a situation not helped by doctors, who are most often, terribly insensitive to the needs of a new parent with a DS child. The problems they encounter only increase as the child grows up. First their health complications, then the difficulty in ‘mainstreaming’ the children. Meghna, the mother of a sprightly three-year-old Unnathi, argues that not all children have genius IQs. It’s only fair to let children with DS study with their ‘normal’ peers, at least at the primary levels. Till now, governments have only rendered lip service in initiatives for special children; she continues to hope that substantial changes will soon materialize.

In a world that is increasingly resorting to the advancements in eugenics and are vying to create ‘designer babies’, it is heartening to see that there still are couples who can accept children with DS; children who fail to match modern definitions of human perfection. These little angels, despite dire predictions to the contrary, re-write the rules of established science everyday at the baking center, and are vocationally qualified for gainful employment even though the world refuses to accept this for a fact.

As I tour this three-storey day care center, little surprises meet me everywhere. Unbelievable levels of independence that make me realize that my patronizing attitude was painfully misguided. Individuals living with Down’s Syndrome aren’t looking for sympathy, or worse, condescension. Give a little love, accept them into your fold, stand by them when they meet their daily struggles.

Most of all, don’t turn your back on them. They're just as good as the rest of us.

Source-Medindia
Tanya Thomas/L