Down Syndrome Day: Embrace the uniqueness

With Down Syndrome Day being celebrated this month, Pritha Banerjee speaks to experts while trying to shed light on the syndrome and dissociate the stigma attached to it

Though Priya Chakravarty is different from any other girl of her age, she never felt anything different about her. Like any other 28-year-old girl, she loves to shop and likes to dance on latest Bollywood numbers. 10-year-old Akansha loves to make her own jewellery and a group of young people who are diagnosed with intellectual disability runs a catering service, Sip N Bite. Their small chin, slanted eyes, a flat nasal bridge, and a single palmer crease makes them unique and special.  They were born with Down Syndrome and with practice and help, they learned how to embrace their weakness as strength. Priya works as an assistant teacher at a play school and trying to live a normal life.

The uniqueness

As the world celebrates Down Syndrome Day, it is surprising to know that a few people actually know what affects at least 23,000-29,000 children born in India every year. Though the numbers are alarming, only a few are discussing the seriousness of this genetic disorder. “Due to lack of awareness and facilities in India, a disorder which is not fatal, continues to be,” rues Amrita Roy Chowdhury, founder and director of Transcendent Knowledge Society. The group is led by professionals for education, empowerment, and equality for People with Disabilities.

The NIH Down Syndrome Consortium defines it as a congenital disease that happens due to a defect in the chromosome, which leads to intellectual impairment and physical abnormalities. It is a gene defect at birth and is a life-long condition. “Normally a person has 46 chromosomes, but a person suffering from Down Syndrome has 47 chromosomes and having an extra chromosome disrupts the way body and mind function,” avers Amrita.

There are three different types of Down Syndrome, among them, Trisomy 21 is most common. It is caused by an error in cell division called ‘nondisjunction’, which results in an embryo with three copies of chromosome 21 instead of the usual two, prior or at conception a pair of 21st chromosomes in either the sperm or the egg fails to separate. This extra chromosome then replicates in every cell of the body. The other rare types are ‘Mosaicism’ (or mosaic Down syndrome), diagnosed when there is a mixture of two types of cells some containing the usual 46 chromosomes and some containing 47, and ‘Translocation’, the total number of chromosomes in the cells remains 46; however, an additional, full or partial copy of chromosome 21 attaches to another chromosome.

Silver lining

Due to the increase in the population of individuals with Down syndrome, they are becoming increasingly integrated into society and community organisations. However, their disorder becomes a constant barrier for them and only a few could accept them with their unique abilities. Breaking the stereotypes, a Pune-based software engineer, Aditya Tiwari became the first single father to adopt a child with Down Syndrome. When a nine-months-old child was abandoned by his parents because he was suffering from Down Syndrome and has a hole in his heart, Tiwari decided to give him home and a new name. He met his son Avnish Tiwari at an orphanage for the Missionaries of Charity in Indore. Overcoming all the social and legal boundaries, he welcomed Avnish as a part of his family. “Avnish will definitely grow to be normal but I’d still love him to be different and unique in his own ways. It would be a pride to see how he stands among many and yet shines the brightest,” says Aditya.

Aditya now runs ‘Avnish Social Welfare Society’ to develop capacities of people with Down Syndrome, and their empowerment so that they live a better quality of life. Through his organisation, he is creating awareness about children with special needs, child adoption and sponsorship of education for children in need.

Though the caregivers and parents are trying hard to keep up with the needs of their child, for them life is simple. Amrita feels that it is important to keep them busy all the time. “When Akansha showed interest in jewellery making, I asked her parents to buy beads and strings for her. Now she makes jewellery for herself,” she adds.

Bump in the road

Due to advances in medical technology most of the children with Down Syndrome are surviving more than the age of nine. Thus, the need for public education and social acceptance is of utmost importance. “It is easy to point and stare but only a mother knows what she goes through every day at home to keep her son or daughter with Down Syndrome safe and healthy,” claims Amrita. A child who is suffering from this genetic disorder also faces a major mental health concern during their lifespan. Mostly, general anxiety, repetitive and obsessive-compulsive behaviours, impulsive and inattentive behaviours, difficulties in sleeping, depression, autism spectrum conditions, and other progressive loss of cognitive skills are common.

“The first reaction of the parent when they realise their child has Down Syndrome is trying to fix it. So, our first job is to make them understand what they need to do,” explains Amrita. A special school run by Transcendent Knowledge Society is focusing on the functional and overall development of a child with special needs. They understand the need and preference of the child and plan the course accordingly. “We have an individual session with each student. It is like any other school but with lots of activities and games. They will have problems with learning, memory, and speech throughout life, but we teach them to cope up with it,” says Amrita. The main purpose of the school is to reduce the burden of the caregiver because they need to be healthy to take care of the child at home. As most of the children are hyper and anxious, when they go for a summer break the mentors make schedules for each and every day to fill their free time with activities.
The children from the age of 10 to 14 years are trained in motor skill development, for 14 to 20-years-of-age vocational training, and for the age of 20 years and above for entrepreneurial development. “As our society is still not inclusive of people with special needs, I feel entrepreneurship is the best option for them,” affirms Amrita.

Sip N Bite managed six corporate events, but they still are trainees and the mentors are always by their side. “They have the cooking and baking skills, but sometimes they have trouble with execution which requires guidance. They know they have to pour tea into cups, but they need to be taught how to pour it without burning their hand,” says Amrita.