Sahil Singh has Down syndrome. He is 23 years old and despite his congenital mental & physical challenges, he has always been a big achiever and an all-rounder. With sheer determination, grit and hard work he overcame his disabilities and has achieved what appeared impossible at his birth.
Sahil was the first born of his doctor parents. The Paediatrician diagnosed him at birth as Down Syndrome (Trisomy 21) and we were told prophetically that “he would never be able to walk, talk and live like normal children”. At the time we could not have imagined in our dreams the lovable, confident independent young man he would grow up to be. Like any other parent, I went through the phases of denial, regret and depression. Thankfully, these stages were very short lived and I began his early intervention therapy as early as 6 weeks of birth. Early Intervention helped in achieving his developmental milestones as near normal as possible, which helped in boosting his self- confidence and motivated me to work harder. As expected, he achieved his milestones late and slowly at his own pace with lot of hard work & perseverance.
Because of his genetic condition characterized by intellectual disability (his IQ 50-55), skills that are simple and normal to most were his Everest. From learning to walk and talk to holding a spoon and eat himself, he seemed to tell his parents ‘Don’t give up on me just yet’. He was a born fighter and fought his way through infections, medical problems, learning disability, low IQ and the apathy of his peers in his infancy and early childhood.
Sahil’s personality and achievements have been possible only because of a truly inclusive environment at home and school. He is treated as equal to his younger brother and not any different. His school, DOSTI Study Hall has given him an integrated and inclusive environment to grow by regular activities and interactions with mainstream students.
The initial days were quite discouraging as the speech therapist predicted that he would hardly be able to speak four words by the age of four and his speech would remain unclear. As if to prove him wrong Sahil grew up to regularly participate in Theatre workshops and Annual concerts of his school. He has been a regular part of Bal-Manch and then Yuva-Manch of Study Hall Theatre group. This has resulted in remarkable improvement in acting and dialogue delivery over years and hence in his speech and communication skills. To begin with Sahil was very shy and introvert, however regular performances on stage and participation in various activities in school and elsewhere shaped his personality and helped in developing his social and communication skills, self-esteem and peer relationships.
Sahil is very fond of music. He loves to sing and dance. He plays various musical instruments like Tabla, Congo, Dholak and music synthesizer. He participates enthusiastically in all types of sports. He is an athlete and a swimmer too. He plays badminton, basket-ball, volley-ball and cricket. He is a Special Olympics champion since the age of 8 years when he won Gold medal in Soft-ball throw in Special Olympics Bharat National Games in 2005. Since then, he has taken part in District, State, National and International level sports and won several awards and championships in Aquatics(swimming), Athletics, Floor-hockey, Basket-ball etc. In 2013 he represented his country in the Asia Pacific Regional Games Special Olympics, in Newcastle, Australia. He participated in Aquatics and won a silver medal in 50m Free-style swimming. Presently, he is an Athlete Leader and a member of National Youth Council of Special Olympics Bharat (SOB) to promote inclusion via Unified sports and group activities.
In recognition of his bold and indomitable spirit, he has been awarded LMA Young Achiever’s Award in 2014 by Lucknow Management association (LMA). On the World Disability day, 3rd December 2014, he was felicitated and conferred State Award for the ‘Outstanding Role Model’ in Mental Disability category by Government of U.P. for his extraordinary and exemplary accomplishments among children with intellectual disabilities. This was the first time when an intellectually disabled person received both these awards.
It’s many a times we underestimate the potential of our children and hence deny them opportunities to prove themselves. To give you an example, I always thought that Sahil (when he was 12 years old) could not ride a bicycle because of his poor muscle tone and balance. But when I saw a 10 years old boy with Down syndrome confidently riding a bicycle in our neighbourhood, I was encouraged to let Sahil try it out. That was when I started his training. It was difficult and took few months of strenuous training, but then he did learn and now rides his bicycle independently. We must have faith in the capabilities of our special children and give them opportunities. When we work hard with them and without expectations, they surprise us with what they can do and achieve. Another example is when I took Sahil for World Down Syndrome Congress in Chennai in August 2015. It was an eye-opening experience for me where Sahil demonstrated immense potential to be independent given the opportunity. It was a big conference in a big hotel where more than 400 people participated. There were separate sessions for persons with Down Syndrome and us the parents. So, I had to leave him alone in different halls among people he had never met. I was very uncomfortable and worried for him. But to my great surprise, he not only made himself at home, but also managed to enjoy and make a number of friends. On his own he managed to find dining hall for his lunch, recreation room to dance and participate in various fun activities or washroom whenever he required. He even offered his help to others wherever he could. He thoroughly enjoyed the freedom and independence at the conference.
In many ways this World congress meeting was a game-changer in his life journey. It opened my eyes as to what all the children with Down Syndrome are capable of. They are trainable and educable as well. Many pursue studies by open schooling or home-schooling. Immediately on our return I enrolled Sahil in the NIOS (National Institute of Open Schooling) board for 10th class and started teaching him accordingly. He surprised me by showing his interest and keenness to study and pass his 10th class. He was in fact very happy with my decision as he always wanted to study like his younger brother. He worked quite hard and was always ready to study NIOS syllabus in addition to his school homework. Sahil passed his 10th class in April 2017 with 78% marks and 12th class in April 2019 with 83% marks from NIOS board by preparing one or two subjects at a time.
Taking advantage of his inherent flexibility, Sahil performs Yoga Asanas amazingly well. He won 2nd position in First District Yogasana Championship in September 2015 in Lucknow among normally abled. He passed his ‘Certificate course in Yog’ from NIOS and practical training in Study Hall school in 2018. He is now a trained Yoga instructor who performs complex Asanas with accuracy and ease. He leads Yoga classes at his school for special needs as well as normally abled children. On International Day of Yoga 2017, he participated in Yoga performance with the Prime Minister Narendra Modi along with 314 normally-abled students of Study Hall School.
On his 21st birthday (19th January 2018), we requested special permission from the Lucknow Police Commissioner to make him an honorary Police Officer for a day, to make his dream come true. He noted FIR complaints, managed traffic, removed wrongly parked vehicles- tempos and buses, and went for a round in Police jeep. He looked smart in police uniform and performed his duties very well while pleasantly spreading awareness about Down syndrome. The entire staff at the police station and people appreciated his work and he felt great and grateful for the opportunity and experience.
Sahil has attended several conferences and annual meets of Down syndrome families in various parts of country. He actively participated and interacted in various sessions and programs in Chennai, Goa, Bangalore and Chandigarh. He attended 3rd India International Down Syndrome Conference (IIDSC) in Chandigarh in September 2019 and was the flag bearer for his state U.P. in the flag parade. He introduced the speaker of Keynote address Dr. Bhavani Sriram (National advocate and medical advisor for people with Down syndrome) of Singapore on stage, chaired her session and felicitated her at the end. He was one of the four self-advocates on stage (selected from various states) in Self-Advocacy session chaired by Dr. Rekha Ramchandaran, President of Down Syndrome Federation of India (DSFI). He spoke about himself and the need for inclusion and opportunities for persons with Down syndrome in society. He emphasized to have faith and confidence in them. He delivered his presentation on self-advocacy (in PowerPoint) independently which was appreciated and applauded by one and all. He made us all proud. He attended Mission Inclusion Bharat Youth Activation workshop in January 2020 in New Delhi.
Sahil’s achievements and photo appeared in the chapter “Down Syndrome: Rising Up” written by Prof. Dr. Shubha R. Phadke, Head of department of Medical Genetics, SGPGI, Lucknow in the IAP (Indian Academy of Pediatrics) book on recent advances (January 2020), as an example to present the positive aspects and potential of children with Down syndrome to recommend a positive approach of clinicians towards Down Syndrome.
Over the years, Sahil has been campaigning for the self-advocacy rights of the specially-abled persons like himself. His presentation and speech at 3rd IIDSC in September 2019 was greatly appreciated and his name was recommended for a presentation at the United Nations on the World Down Syndrome Day (WDSD) 2020. He was then selected from among a host of applicants from all across the world to speak as a self-advocate on WDSD 2020 at the United Nations Headquarters, Geneva on 20th March 2020 during the 23rd session of the UN committee on the Rights of Persons with Disabilities. Unfortunately due to the COVID -19 pandemic, the physical conference could not be held and instead a virtual conference was held by the organizers, Down Syndrome International. His video speech on the theme “We Decide” was played during the online Virtual Conference from the United Nations Headquarters, where he shared his thoughts and feelings with the world. He stressed that they (Persons with Down syndrome) are capable of making their own decisions and they have the right to do so. He appealed to all that we should have faith in our children and give opportunities to prove themselves. The speech was heard and liked by netizens across the world.
Sahil has been working as an Assistant coach in Special Olympics Sports and Yoga in his school and continues to take online classes during the COVID-19 pandemic. He has been attending several online meetings, workshops and webinars of Special Olympics Bharat (SOB) and Asia-Pacific (SOAP) during the pandemic. He attended the National Zoom Webinar on “Opportunities & Challenges in training Special Athletes in COVID -19: SO Bharat” organized by Special Olympics Bharat (SOB) and Sports Authority of India (SAI) as a Panelist and Presenter on the Topic: Intellectual Disability led by Dr. Amitav Mishra (General Secretary SOB) on 1st May 2020. He has participated in several virtual games and competitions and won awards too. He has been taking part in various forums like National Athlete Input Council (AIC), SOB Sibling and Family forums, National Youth Council (NYC), Youth Activation Committee (YAC) of SOB and DSFI sessions etc. and has taught online Yoga at times. He successfully completed the online course on ‘Communication Skills training’ through a 9 week workshop on ‘Social Communication’ through the months of July, August and September’20. The classes and small group meetings / interactions were taken by the teachers in USA. During the online Teachers’ Day celebrations on 5th September’20, Sahil narrated the tale of The Tortoise and The Rabbit beyond the known into multiple twists with profound lessons on ‘Sports- A Great Teacher’. He participated in the Virtual National Youth Leadership Summit (SOB) in October’20 which was conducted by the Youth for the Youth (with and without Intellectual Disabilities) from 20 states of India to share their ideas for an inclusive world.
Sahil has raised the bar for the persons with Down Syndrome. He is an excellent role model as he gives immense inspiration and hope to all persons with Down syndrome and their parents. He has proven without a doubt that early intervention, hard work and perseverance and most of all faith and confidence in our children make them not only socially acceptable and independent, but they can lead a fulfilled and meaningful life with dignity. They are sincere, loyal, honest and selfless joyful individuals who can contribute to society in a useful manner. They might require our support and guidance for their health, jobs and money matters but they have the right to decide for themselves and be involved meaningfully. Sahil and his achievements motivate all persons with Down Syndrome to work hard with dedication and diligence.
Contact details:
Sahil Singh
s/o Dr. Rajneesh Kumar Singh
Phone: 9451540842
Email: sahiltigersingh@gmail.com
Correspondence:
Dr. Bhawna M. Singh (Mother)
Type – 5B/6, SGPGI campus,
Raebareli Road,
Lucknow– 226014, U.P.
Phone: 9450918503
Email: bhawnams@hotmail.com
