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By Tejomani Kumar
15/09/2020

RUN 4 EVER

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  • This Blog is by my son Aditya Jogania  

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    In this story, I am going to cover my life with disability so far. This can be treated as a small autobiography. To start with, I’ve Dyspraxia which is a developmental disorder affecting motor skills and coordination. Still today, at the age of 17, I can’t do many things that a normal 17- year-old can do. If I go into details, my disorder hampers my life in various ways, for example, I cannot tie my shoelaces, I’m super clumsy, not able to cross roads, don’t have bladder control, faded hand eye coordination and have trouble with ADL. There are many more chores which I cannot perform. I can go on and on!

    Since the day I was born my struggles started as I did not achieve my milestones on time. In 2009, I came to Poona and I started with my therapies. My therapies included Occupational Therapy, play therapy and other therapies. When I joined school, I struggled a lot in my studies too. I was unable to write notes and my mother was constantly in touch with my teachers and classmates for my notes. Though I wasn’t bullied, but I was not able to make friends. I still can’t.  That made it worse. I was lonely.

        

    Even though I had some serious issues, I constantly tried to ward them off and went on to win the third place in Pune for my first Abacus competition. My confidence soared. I started joining extracurricular classes to give me enough exposure. Not only this, my society’s Ganpati celebrations were never without my keyboard performance. I have participated in 3 competitions so far and have won medals. Along with my dyspraxia, I also suffer from a genetic disorder called Thallesamia, for which I have to take regular blood transfusion every 3 weeks. My mom’s and my constant efforts went on until I was in the 10 grade. In 9 grade I had to quit formal schooling to join NIOS board since the school was afraid that I might be the one who will stop them from getting a cent percent result. I don’t blame the school, since I really struggled with academics despite my above average IQ. Academics were still a problem for me with my failing attention, slow writing, and not being able to plan my activities. And of course, the punishment of being a clumsy kid who bangs, stumbles, spills, and flaps is still all pervasive. 

    Life is still far from perfect. I know there are a lot of potholes that lie ahead. But I am ready, with my parents backing me in everything I do. I like to forget about my worries by diving nose deep into activities I love. I love cars and love to research about them. I have a YouTube channel where I talk about cars and the automobile market. I write blogs too. I write about my experiences and my everyday life. I sing in the bathroom and outside it.  I play loads of video games too… I have joined arts stream in a junior college for my 11 grade. I know I will still be that clumsy guy who will be different from the whole classroom. I know I will be that odd guys in the street. But let’s see how it goes. May be better than it was a few years ago? Not sure, though I wouldn’t trade my life for anyone else.

    Lastly, I would like to thank Jyotsna aunty who introduced mum to Nayi Disha and Nidhi maam, for giving me an opportunity to pen about me. I want to just say, that it is not at all easy, but with all of us together, we can climb a step one at a time!

    Regards,

     

     

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    9408763082's picture
    9408763082

    My son Rutvij is non verbal autistic boy. He also like to travel in BRTS buses and metros. When I read this article. I was visualising Rutu's journey in back of my mind. This is really a wonderful attempt .