Story by Hugo Taheny, with support from Louise Taheny
Connection is very important for me because I live on a farm in a small rural community and I love catching up with my mates.
I live with my mum and dad, and I have two older brothers and two older sisters – I love it when they all come home!
In my community I am the only person with Down syndrome.
Staying connected during COVID-19 has been extremely difficult. I had to stop work and stay at home on the farm because I have congenital lung disease. My older siblings who work in mining and agriculture couldn’t visit us, so it wasn’t much fun because I really missed them.
Our farm is on the beach and was deserted, so every afternoon I would fish with my dad or walk with my mum.
The other thing I learnt to do during COVID-19 was to ride my bike without trainer wheels. The country roads were really quiet so my dad and I would ride into town for a milkshake, which was a treat.
My brother Tom manages a property in Coonawarra, seven hours from our home. While we still had to be careful about COVID-19, my dad and I went to his farm to help him with shearing. I loved this!
My friend and support person Josh set up some Zoom meetings where I could play Uno and bingo against my mates who also have Down syndrome and live in Adelaide. This was funny and good fun.
My brothers and sisters came home for a Christmas in July so we could all see each other because we like to hang out together. Although I couldn’t get out and about in the community during the lockdown, I am really grateful that we live where we do so I could drive around the farm on my Gator, have fun with my dogs and visit the beach without seeing anyone.
I go to the gym in the next town. Each week I travel to Adelaide to compete in athletics. I throw shot put and discus, and I help at the football club. At the football club I help run the water for my brothers’ team and I like to help in the bar. My club, the Southern Eagles, made me the assistant coach for my brother William’s team. My favourite thing at the footy club is chatting with everyone.
In 2019 I represented Australia in athletics at the INAS Global Games in Brisbane. I won a gold medal in the discus and became world champion.
At the community Christmas Eve Pageant, I got to ride in a convertible to show everyone my medals – I was very proud, everyone was very kind and called me Champ.
I really like to take photos and share them on Instagram. My Instagram username is @HugoRockstar15. Instagram allows me to connect with my friends through emojis and I also like to connect with people via Messenger and I talk with my brothers and sisters often on the phone.
After I have competed at athletics on Saturdays, I help my friend Matt to take photos for Athletics SA, and each week Matt posts ‘Hugo’s Top 10’ photos on the Athletics SA social media platforms.
Matt is a really good mentor, and we chat while we work and I get to connect with the athletes as well. I would like to be a professional photographer; I really enjoy editing my photos and posting them to social media.
Last year I was awarded the Young Citizen of the Year for my community. The Mayor talked about how through my athletics I was a really positive advocate and role model for young people with a disability and how much I had influenced my community.
I am excited about my new role as a Health Ambassador for Down Syndrome Australia because I like to meet new people and I want children with Down syndrome to have a better life. I want to help people in the medical profession to have a better understanding of how to best work with and help people with Down syndrome. I want them to know it is important to be kind, respectful and to talk to me so I understand what is happening to my body.
I have lots of plans and dreams and one day I would like to write a book called How to Be a Rockstar!