Dear Future Me,
In five years, I want to tick everything off my bucket list. I want to meet lots of celebrities including Tones and I, Ricki Lee, Missy Higgins, and Delta Goodrem. I want to work in childcare or interact with dolphins and possibly work at SeaWorld, I want to live on my own in Queensland, I want to win the lottery and live with a white Pomeranian that I can train as a therapy dog to help with my mental health issues.
One day, I wish to go to the beach and the pool and swim unassisted, that would be my paradise. It would also be my dream to go on a Disney cruise and take pictures with all the Disney characters. I hope that Seaworld makes their swimming with dolphins experience wheelchair accessible so that I can pursue my ultimate dream of seeing the beautiful, majestic creatures up close.
I’ve learned in my years of schooling and education that as you get older you have to fight for your rights and advocate for yourself to make things accessible and realistic. In my time at school, unfortunately, I’ve encountered some Student Learning Support Officers (SLSO)’s that were unwilling to learn new things and grow from their mistakes. My father and I had to fight incredibly hard for me to be toileted safely and appropriately, I give credit to my physios who did not get off their backs until I felt safe and comfortable. I went through an incredibly tough time and had an extreme amount of anxiety to the point I was not drinking any water and holding my bladder for six hours. Then I developed PTSD because an SLSO, who was not meant to be doing the toileting, dropped me on the ground. As a result, my knee was in extreme pain to the point where I could not transfer or weight-bear for two weeks. My psychologist has been incredible, validating, sympathetic, and a great therapist on my team.
Friendships have been exceedingly difficult for me to develop; in the younger years of primary school, I was lonely because most kids used to make an excuse to run away and then never come back. I have also been called more derogatory names than I can count. I am pretty used to it now because I think my experience has made me stronger and I have grown thicker skin, and I am more determined and motivated now.
My experience with being in the community has been far from easy as I get anxious on buses as apparently, the legal requirement is that wheelchairs must sit backward on a bus and it makes me feel uneasy and nauseous that I cannot see where I’m going but my school staff make visual gestures with their hands to make me feel comfortable. I go daily on a public bus to school sport which is something I never thought I’d be able to do until my dad pushed me out of my comfort zone and told me to give it a go. I love going to concerts and it is my way of decompressing after an emotionally draining week. I have an exemption to wear noise cancelling and Bluetooth headphones and I mask my emotions a lot. However, when I got to live concerts, it’s one of the only times I get to scream and not hide anything.
To be honest, my future education scares me a little bit. Public transportation is a big issue for me and there is a lot involved with people with disabilities when applying for a job. I would like to attend an employment program, but I know getting funding approved can be a long and extensive process and it could be months to years before I get space available for me. However my therapy team have been amazing and they have been extremely supportive of my journey. Whenever there is an issue, they do not hesitate to step up and advocate for me when I need help.
Lastly, in five years time, I hope my for three amazing opportunities. One of them was meeting my idol, Amy Shark – that is something I hope I will never forget. I am also praying that there will be more awareness and potentially a cure for my mum and others who have MELAS syndrome and that they can live a life without feeling frustrated, confused, or isolated.
Although I want to live on my own, I want my dad around so we can continue spending time with each other and making memories. My parents have been there for me through thick and thin, including my father who gave up his job and career to take care of me whilst my mother was in hospital recovering from strokes. I pray that in five year time my whole family is happy, retired and have stable health.
Written by Lara Grimson.
Lara is a 16 year old high school student who has Cerebral Palsy. Listen to her on episode 50 of our podcast Have The Nerve: Something To Think About – Are We Given Equitable Opportunities?