My name is Barbara Paruk...

My name is Barbara Paruk. I was born in Vienna in 1982, where my parents had emigrated to from Poland. Moments after being born in a clinic in Vienna I was placed into physiotherapy, as I had a complete muscular dystrophy. After 5 months of my life my family and I made a journey to start our new lives in Australia. Here I got lucky! Instantly I was placed in the care of a team of great doctors in the Westmead Children’s Hospital, Sydney. I needed to be placed into occupational therapy, physiotherapy and once I started to talk a little, speech therapy. Once I reached 3 years of age I had surgery to fix my crossed eye, resulting in more physiotherapy. I had to exercise every day both at the hospital therapies and at home, because my parents wouldn’t give up on me.  Although the exercises were a big part of my life it wasn’t the only thing I did. I always liked water so I learnt to swim before I was able to walk. My love of swimming is still with me till this day. In swim schools I’ve learnt all swimming styles and even today in water I feel like a fish. I’ve also liked drawing, colouring and puzzles and that also hasn’t changed much today. I’ve even have a few achievements in these fields as some of my works were awarded prizes. My latest work was creating graphics for a theatre play brochure, in which I also starred. 

I have finished Catholic primary school and high school, where the programs were tailored to my abilities. During the duration of my education I have finished multiple courses including: a computer course; cooking course; art course; a 6 month TAFE course. 

In year 2000 I left Australia with my family to live in Poland for 12 years. Luckily my luck didn’t leave me! There I found an active therapy workshop for disabled people. I had to quickly improve my Polish, learn how to move around a new city and adapt to a new lifestyle. Here I started my career as an actor. I signed up to a theatre where all actors, directors and all the other staff are all people mentally disabled like me. With this theatre troop I have performed all around the country as well as internationally. I have also travelled around Poland as a self-advocate helping people with mental disabilities adjust to their lives.

In 2012 I moved back from Poland and once again I had to fully re-adapt to my lifestyle. From multiple possible opportunities I chose to work in Civic Industries (supported employment), where I work till this day. My main jobs are sticking labels on products and packaging merchandise into boxes. Lately I’ve even tried my strengths in the reception and administration areas. Even though work is fulfilling I couldn’t stop acting. I have joined the theatre created by the Disability Trust and I really enjoy my choices. I’m a very social person and I love meeting new people, travelling and dancing. My favourite is combining it all when I go on cruises with mum for holidays.

Note from Barbara’s parents:

Barbara has been both a challenge and a driving factor from the start. With her you can’t be bored. She constantly has new ideas on how to spend free time. She uses her free time better than us, l constantly trying something new or trying to pick up a new hobby. Be it painting, drawing, embroidery or crafts, she has learnt all those skills by herself. They are not the only things she has learnt herself. She has taught herself to read in Polish, skate, ice-skate and ride a bike. We are proud of her achievement and are confident that ere are many more yet to come. 

Thank you so much for sharing your story, Barbara!

Greetings from Australia!

Hi, my name is Ashley. I am a 23 year old boy with PWS. Life is pretty good down here. I live out of home in shared supported accommodation with 4 older men who have various special needs. There are 3 people supporting us during the day and one awake support worker at night. The kitchen cupboards and the front door are locked and I try my best to keep the carers busy by constantly checking the locks and by getting up many times during the night! We often have unfamiliar staff who don't understand PWS and me and my flat mates also fight a fair bit which can make me very sad.

We all go to a day program from 9-3.00pm during week days where we study, do some volunteer work and have fun. My favourite is doing the paper round where we stuff letterboxes with those beautiful junk mail catalogues! I spend most Saturday nights with mum or dad and go for long walks, bike rides, swims (20 laps of the 25 metre pool) or window shopping.

My disability pension from the Australian Federal Government pays for my food and rental and subsidises part of my day program, with just a few dollars left over for clothes and outings. The house and day program support workers are funded by the State Government. Not everyone in Australia has these supports, mum and dad have had to fight hard to get them for me. However, things are about to change. Australia is commencing a new National Disability Insurance Scheme (NDIS) which may make support funding more available for other people with PWS.

The NDIS will work something like this. Everyone in Australia will pay a small insurance premium in their taxes. If they are born with or become significantly disabled, and the disability is lifelong, they can apply to the NDIS to receive supports that are ‘reasonable and necessary’ to live an ‘ordinary life’. The scheme will not pay for the ‘extraordinary’ and the supports must be ‘value for money’. Perhaps another way to explaining it; this is a bit like an extension of our national health system – NDIS pays for supports on top of healthcare.

Once I get my NDIS funding I hope to make some improvements in my life. I would like to live in a home designed specifically for people with PWS and I would like to find more work (paid or voluntary).  Don't get me wrong, life is still pretty hard for me with the day-to-day challenges of living with PWS, however, on balance I feel fortunate that I am able to access many supports. Yes, life is pretty good here down under! I also recognise that many people may be finding it much harder in other countries and I urge readers of this post to consider donating to the great work of IPWSO in helping people across the globe to improve their life by clicking HERE.

Ashley and James (father)