World Down Syndrome Day

Christel Naomi Roberts 

As we celebrate World Down Syndrome Day on the 21st of March every year, did you know the month and the date stand for Trisomy 21 the extra chromosome that is found in Persons with Down Syndrome? Tri-denoting 3, hence March being the third month and 21 being the number of chromosomes. This was news to me! I learned about it from Nayana, a dentist by profession and the mother of Purab, a person with Down Syndrome.  

 Purab is almost 17 years old now, who loves playing basketball. He is a fitness freak and a foodie (rare combination😊). He is an independent individual studying in Valley School, his love for others is unconditional and he is very content with his life.  

 Rewinding to 17 years back…. Nayana shared her journey starting from Purab’s birth.  Back at that time, there was no easy access to resources, the internet, or awareness about Down Syndrome. It was tough for her and her husband to understand about Purab’s condition then learning to accept it and growing along with Purab as young parents. They had so many questions and doubts on how to help Purab.  

 She and her husband took Purab for various therapies – be it speech therapy sessions in another part of the city, courses on sensory stimulation, stimulating massage sessions, and many more. It took a lot of time to train Purab on his daily tasks and was very challenging. She said, after few years, Purab started responding very well to the therapies. He started walking and talking around the age of 2, and every word and action Purab did or said was a milestone for them. They celebrated each milestone with great joy and hope for the future. 

 She expressed that one of her greatest challenges was finding a school for Purab, at that time (even now ☹). Inclusion was very new in many schools’ vocabulary and finding an inclusive school was an uphill task. After many searches they came to know about “Headstart” through some of their contacts. It is an inclusive school with special educators and Purab studied there for 4 years. In the process, they learned a lot of things like different methods to use to teach him the academic concepts, familiarizing him with the environment, socializing skills, toilet training, and a lot more. After that he got accepted into Valley School and continuing still.  

 Nayana wants to create awareness among the general public about marginalized communities and down syndrome and create an inclusive, friendly opportunity for work!  She also works with parents of children with down syndrome guiding them and counseling them to accept, love, and train their children through a network of therapists and other counselors. 

  Nayana believes that kids with Down Syndrome have few similarities in their personalities and characteristics – they show unconditional love for all, are content with life and are highly organized. Depending on when and how much therapy and stimulations were given, the talents and creativity and the brain development could vary among kids. According to her, most of them seem to love music and dance and are very spiritually inclined.  

 Talking about the skill sets and job opportunities for adults with Down Syndrome, Nayana said, they are highly organized and are great at doing tasks that are time-bound, repetitive and involves interacting with people. If we could tap into those skills and train them accordingly, they would do great in jobs across various sectors including IT sector, Hospitality sector, as salespersons and any job that involves these skills.  

 When it comes to Purab’s future, Nayana said that it is something that concerns her the most. What next is a constant question that they have but are positive and hopeful that with the right collaboration with allies in the industry, future can be very bright!  

 If you are passionate about making this world more inclusive, connect with us by sending an email to info@WinVinayaFoundation.org and we can explore collaboration.