It’s hard to know what I don’t know, I had to really think about this article and I feel like I’ve missed out on potential opportunities that would change the way I write this article. I’ve heard a lot of stories about shared experiences that other people living with disabilities have had. Some people have gone to social outings where there were kids which led them to have friendships and connections with people in similar situations to them. I never had school holiday activities or knew anyone in my local area as a child who had a disability.
Upon reflection, my past was very isolating. Attending primary and high school my exposure too people like myself with a physical disability was very limited and I felt alone in my experience, not to say I didn’t make friendships, but I couldn’t relate to anyone or share experiences. So if I could tell my younger self something I would say try to open my horizons and push for experiences that I could share with likeminded people.
This reflection is hitting me hard. I wish I knew more about my disability in my early adult years. For example, I just recently found out that someone with Spina Bifida could walk, not too say that I ever will but I feel like I was miseducated. I also feel like I should of learnt more about overtime. There’s probably things I still don’t know about my disability and about others who live with Spina Bifida.
I have attended the Spina Bifida clinic at Westmead and I feel that there’s been a lack of consistency in the disability sector. When I was little I would never of guessed we had the NDIS coming. I’m not going to say that the NDIS is perfect, however I’m very blessed with the opportunities I’ve had as they have allowed my independence to be built up step by step. I also feel that I’m now in control of my destiny. So, I guess I would tell my younger self, that things will be better, it’s okay to dream and that there’s opportunities for freedom, there’s more to life then being confined to a chair and wheels.
Since the NDIS has come into effect, I’ve had physiotherapy weekly. As a child, I had some therapies that were delivered to me only while I was in hospital when I was admitted for having pressure sores. At school, I was lucky enough to have teachers aids throughout my entire schooling from K-12.
If I could change anything about the past, I wish I had early intervention and therapies in place to prevent me having pressure sores and to better my physical health and my abilities. I truely think, I just lacked exposure, support and was not properly educated about my Spina Bifida. I’ve had surgeries and I’m not completely sure why I needed to have them or where I’m at with my care. However, I recently touched base at the Spina Bifida clinic at Westmead. I’m confident in my team and I’m in a pretty good place right now.
This article has put me in a headspace of thinking that I should look back into my past and find out the who, what, when and why all this happened. It’s a hard transition between a parent being in charge of your care to you taking over at 18 and not knowing or having the skills to be ready for the responsibility. I feel if I could go back in time to when I was 18 and becoming an adult I would make sure that I got external support and tried to build better pathways for myself. I would have surrounded myself with people that were equipped to pave my future.
I didn’t get on the NDIS until I was 20. If I could go back in time now, knowing that these services were available, I would push to have them sooner. Looking back at the big picture, I lived a pretty normal life and didn’t have my disability define me. I don’t know if I’ld change much about my life now, however living in the Hawkesbury, I felt that I was very limited but I’m happy, having no regrets. However hindsight is a pain in the back side. I think that I can’t change the way I was raised or where I was raised. Early intervention would probably be the biggest thing I would have changed as well as trying different therapy’s that would have bettered my physical health and mental health. But there’s no time like the present, there’s still things I haven’t tried, such as art therapy and hydrotherapy. I wasn’t ready for it then but I’m ready for it now, my disability doesn’t define me!
