MyStory: 'I Do Not Allow Challenges, Special Needs To Dampen My Spirit'

I was diagnosed with down syndrome at birth. My parents, despite stress related to my diagnosis and future, never let it reflect upon me.

At birth, when doctors communicated about my severe disabilities and that it might prevent me from achieving my milestones, my parents and family were shocked and took some time to accept and initiate way forward.

My life began with regular visits to hospitals and clinics since I was born with holes in my heart. Knowing nothing about the diagnosis and its repercussions, my parents researched a lot about my situation.

They spoke with many doctors to find out what lay in store for me and how could they provide me with the best. I was just four-months-old when, with the permission of my cardiologist, we travelled to Yemen, where my dad was posted.

Initial months flew by in settling down until I suffered from a prolonged high fever when I was eight-months-old.

We had to travel to Delhi immediately, as my oxygen level had fallen from the normal 94% to 51% and it wasn't guaranteed that I would survive the journey.

My cardiologist, Dr Vikas Kohli in Delhi helped us get the necessary special approval from Dr Ahmed to enable us board flight to Delhi.

We reached Delhi, and Dr Kohli was well prepared for my admission into the ICU. I was admitted for a fortnight to have a Patent Ductus Arteriosus (PDA) closure procedure done. One hole in the heart was closed by surgery.

As I was just eight-months-old, I was oblivious to the stress my family was in. Life went on, but our struggles had just begun. I had to undergo another surgery - Tonsillectomy - at the age of 13 as I used to fall sick often.

When I was four, we relocated to Mumbai in 2007, and my parents had to make a tough decision between an integrated school and a school exclusively for the disabled.

Due to the social stigma around disability, we were often looked down upon, and my parents were ridiculed for what I was going through.

However, after a lot of conflicts, they decided to admit me in a school for people with special needs: SPJ Sadhana.

Thus, began a journey of new learnings and being in a comfortable environment where everyone was like me.

I was exposed to the best; whether it was academics matching my capabilities or pre-vocational training. I was taught life skills that would make me more independent.

Inevitably, there were several challenges related to academics- there were delays in intellectual abilities and my speech.

My thoughts were incoherent. I was unable to communicate like the others around me, and that frustrated me. I had specialised therapies comprising of speech and occupation, and SPJ Sadhana became my abode and a haven I found comfort in.

Apart from school, however, I had no social life. I did not have friends my age because they were not "special" like me, so I created a secluded world of my own and my family.

I spent time alone at home or with my helper who took special care of me, gave me a lot of attention and supported me. She nurtured my development and growth.

My sister did spend time with me but was often engaged in playtime with her friends from school, and I was mostly left alone – to engage myself in my own world.

Believing in "Attitude is Everything", taking all shortcomings and challenges is my only mantra in life.

At the age of 7 and 8 years, I enjoyed adventure sports – be it river rafting, cliff crossing, rock climbing, rappelling at Goa, banana boat rides and snorkelling in the Maldives.

In 2014, on the recommendation of SPJ Sadhana school, my parents relocated to Dubai to provide me with a change in the environment and provide me with exposure to a different culture, lifestyle, for a few years.

Moving often destabilised my comforts, and I was forced to push the reset button. In Dubai, I have been at Al Noor Rehabilitation & Welfare Association for People of Determination and must state that it added to my learnings at SPJ Sadhana school in Mumbai and groomed me to be an independent adult.

This exposure stretched my boundaries, and I am learning the basics in Maths and Science and Communication. The sessions I enjoy the most are ICT (Information& Communications Technology), Bakery and Library. I enjoy reading books and can access various apps on my Ipad and computer.

Dubai also exposed me to several extra-curricular activities that enhanced my confidence, self-dependency, which overshadowed the shortcomings that hindered my growth.

I have been attending Horse Riding classes, Aqua Aerobics, Swimming, Dancing with Academy, Baseball, and many other outdoor activities with a fully inclusive Talent Academy-Rising Stars. Year after year, I enthusiastically participated in numerous Fashion Shows organised by FAME, an event management company.

Today, I do not allow challenges and special needs to dampen my spirit. With encouragement from my parents and my older sibling, I push myself beyond my limits and add to my capabilities and vocabulary every day.

I do not know what the future holds for me, same being the main concern for my parents – but yes I do dream of owning and operating a café someday, offering a selection of my favourite food and beverages.

It's been a long journey for me and it has taken a lot of efforts from my side to accept what has happened with me completely.

I am proud to state that I am being groomed by my Centre to represent the Down Syndrome Society of Dubai in Expo 2020 which is going to be held in 2021 where I will get an opportunity to interact with various dignitaries from participating countries and discuss the various nuances related to self-advocacy.

Since the world feels that determination is a word rightly coined for people like me, I am determined to be independent in all aspects.

I want to continue with my efforts to ensure that there is nothing which is impossible for me. I can, and I will take up every challenge that life throws at me and will outgrow it.

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