Down syndrome or Down's syndrome, also known as trisomy 21, is a genetic disorder caused by the presence of all or part of a third copy of chromosome 21. It is usually associated with physical growth delays, mild to moderate intellectual disability, and characteristic facial features. The average IQ of a young adult with Down syndrome is 50, equivalent to the mental ability of an eight- or nine-year-old child, but this can vary widely.
Nevan is 8years child with down’s syndrome, student at Swami Brahmanand Pratisthan, centre for PWID at CBD, Belapur, Navi Mumbai. He was admitted in Special school when he was seven years old before that he attended normal play school for two years. Physically he is weaker compared to an 8-yr old child, mentally his growth stands at 55% in comparison to his age. He is extremely alert and has a very good memory and imitation skills. He learns very fast from seeing and observing and will always want to try new activities. Memory and imitation with understanding are his strongest skills
His parents had read about Down’s Syndrome before Nevan was born, so they were aware of hyptonia, weak heart and vision, slow digestion system and slower growth. From their studies, they knew about the external points like facial features, eyes, softer muscles, etc. As for the health situations, they are also aware about points like weak heart, hypotonia, defective vision, slower mental ability, slight impairment in hearing, etc.
“The test was conducted as soon as he was born and we knew about it.” says his mom, Patricia. “We celebrated his birth with as much joy as we did for my first-born son. He showed signs of alertness and emotions. Our reaction was joyful to have him born to us and we would do anything to keep him healthy.”
Nevan’s mom Patricia is confident that children with Down’s syndrome can lead a near-to-normal life with positive social assistance and understanding from family and society. As a parent, she advises that parents must be vigilant about proper food and nutrition as that combats the weak digestion and improves muscles. She recommends that the child gets eyes, ears and speech checked regularly, to use proper equipment for the child right from when they are one year old and has continuous physiotherapy and occupational therapy.
Patricia is very happy with the improvement that Nevan has shown after being admitted at Swami Brahmanand Prathisthan. “He learnt to use the wash-room when in need, learnt playing physical games and also has a liking for swimming, his eating habits have improved, he has started saying a few words, maintains erect posture, running, walking and definitely dancing are his strong improvement points”
She feels the school’s complete holistic learning has put Nevan in a progressive mode. “The activities like sports activities have helped him to now love football and the occupational and physio therapies have helped him to be more in control of his body and his daily routine. The teachers attention and care and constant motivation for all students including Nevan has been a very big step for his progress.” Says proud mom.
During Pandemic, there has been regular virtual classroom throughout the year, thanks to good interaction between parents and class teachers that include professionals like physiotherapists, art, craft, music, sports teachers, children have shown great improvements.. Nevan is too young to understand much about pandemic but he definitely has learnt to wash hands and legs as soon as he comes home. He has understood that there is a need for washing hands, taking a bath, wiping a plate before eating, etc. he spends his time observing and imitating his older brother and thereby learning it thus.
Patricia feels that there is not much awareness about Down’s syndrome. “I think the general public is more aware of a physical disability than mental / emotional situations. In this case this is a genetic disorder and to understand and accept DS will require more awareness among public.”
She expects society to be more inclusive and not being exclusive when noticing a differently abled persons. “The people or children who are specially-abled are able to do the routine activities but they may be slower or may do it differently. The society needs to assist and not over-help. People must be aware of the good side of the differently abled and not think of it as a burden or “some ‘thing’ from the previous life” mythology.”
We have many students who are in the area of studies through which they are learning psychology, therapeutic studies, medicine, etc. “The institutes of the type could set up co-learning and teaching for DS students to learn to live and/or learn techniques through which they can also be of assistance to therapeutic practices.” she adds
Now, to spread the Down’s syndrome awareness, ‘The Lucky Few’ movement has spread; anyone who feels lucky to know someone with Down syndrome is getting the tattoo of 3 arrow. The tattoo is meant to be placed in an obvious spot to start a conversation about Down syndrome. This allows The Lucky Few to spread awareness, promote inclusion and educate others about Down syndrome. 21st March is recognised as Down'e syndrome awareness day.