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Preparing for Adulthood Guide
Preparing for Adulthood - Easy read guide
Young people have put together this Easy read guide to help you plan for your future.
Vivek Gohil's Transition Journey
Hello, welcome to my Transition journey. I’m Vivek Gohil, I’m 31 and live with the muscle wasting condition called Duchenne Muscular Dystrophy.
My transition process from children services to adult services was quite daunting as I had to communicate with a new social worker and explain my history to a new team. I had heard that provisions for disabled people in adult services would be nearly non-existent. This meant that transition was going to be an unknown process to receiving completely different provisions of care.
Before transition as a teenager, I was quiet and generally didn’t like speaking to people due to stress and anxiety. I was also in the mindset that my Mum would take care of my medical needs, so I didn’t need to worry about my condition.
Experiencing transition however made me grow up and become independent and active in dealing with my condition. I thought that if I have the disability, then it’s up to me to look after my body in the right way. This idea helped me start to understand my needs before I would be overwhelmed with severe muscle loss as I get older.
During transition there are usually other big changes or decisions to be made, as I was studying for my GCSEs and preparing to go to college. It can be a scary prospect especially when you are beginning to experience loss of muscle function. Everything changes.
My transition social worker was talking about independence in the form of living independently which was not something I felt was right for me. I then realised that I could still be independent whilst living at home, it was my mindset that needed to change to facilitate freedom, choice and start to transition me from childhood into adulthood.
I now live an active, fulfilling and busy life. I’m passionate about gaming so I have consulted with Xbox, Playstation and various game developers on how to make their games inclusive through designing accessibility settings for gamers with severe mobility disabilities. I have also spoken at gaming conferences about my experience as a disabled gamer. I also regularly speak at DeMontfort University to provide the perspective of living with a condition to trainee nurses. Nearly a 3rd of my talks will be about my transition journey as it has been a pivotal moment in my life.
Vivek was the co-chair of the East Midlands Regional Action Group for Transition.