Cerebral Palsy affects one in every 500 Australians. It can affect an individual in a variety of ways from physical weakness in one hand to a complete lack of voluntary movement throughout the whole body.
Ben Tudhope is a 17-year-old paralympic snow boarder, who also happens to live with Cerebral Palsy. Ben and his mum Melissa share their story of overcoming obstacles to support Ben's dream of becoming an elite athlete competing on the world stage.
Listen to Ben and Melissa on Kinderling Conversation:
The stigma of a physical disbality is pervasive. Ben is testament to the fact that disablilites are not 'life sentences' and with the right research and treatment, people living with disabilites are just as competent, driven and high achieving as their peers. By working with the Cerebral Palsy Alliance since he was eight weeks old, Melissa says Ben has flourished. If you needed even a shred of tangible proof to the effect these sorts of institutions make on people's lives, at Sochi in 2014 he became the youngest ever Winter Paralympian in Australian sporting history.
"It's still such a big deal and it's my most defining moment," Ben explains. "It's still such a crazy thought that I even am. We all dream of being an Olympian or Paralympian. Already being one at such a young age, I get so much thankfulness from everyone. From my friends and everybody. They just see me as this awesome kid, but at the games [Sochi 2014 Winter Paralympics] it was amazing. It' still so unreal and it's... just so good to have one [Paralympics] for experience for later."
At age eight Ben started snowboarding at Mount Hotham in Victoria. A family of snow lovers, the Tudhopes have always felt at home on the slopes, something that for a time, Ben's mum Melissa had to block out judgement for.
"We make it all sound very rosey and fun, but there are some reallly tough times as the last child in the family to be living with Cerebral Palsy. At the same time we never wanted to wrap Ben in cotton wool. I felt that some very good friends didn't quite understand what was going on within our family," she says. "But you just felt that by them, even the way they may have asked you how you were, there was always this sort of feeling that they were very uncomfrotable with how they were feeling about the situation and very careful of... saying what their kids were up to."
Listen to Professor Iona Novak from The Cerebral Palsy Alliance on Kinderling Conversation
That's not to mean that Melissa and her husband let inadvertent judgement affect them too much. Melissa says that for every peculiar reaction, "there were other parents that would really surpise you and be very direct and ask you how things were going, could we help out... could we take your other two children somehwere whilst you take Ben to The Cerebral Palsy Alliance for his ongoing appointments."
While Ben has been kicking goals and outstripping his personal bests on slopes around the world, Melissa says that his passions have driven her to realise the important things in life. Reflecting on those first years Melissa shares a bit of the early story.
"It's been a really interesting learning curve... Having two beautiful daughters and I was very keen to have a third child as the full stop to our family... and we were a little bit smug I guess," she ponders. "We fell pregnant straight away, we had two girls and were having a boy, but then all of a sudden the important things in life really start coming to a head; of what's really important and what's really first world problems. Even though I often said I didn't want Ben to be the one to be teaching us things like that because he's the child, but he has taught us to stop and smell the roses and to know what's important as parents."
Melissa and her husband spend most weekends trecking from their home in Sydney, NSW, to the snowfields for Ben's training. The whole family loves going to the snow. Ben was on skis at age three while his sister was snowboarding at the same time.
"I just loved the look about it [snowboarding] and was influenced from the start," Ben says, cheekily adding that he thinks it's funny that his mum, a skiier, jokes that by becoming a snowboarder he's "turned to the dark side."
As for judgement or criticism from his fellow snow boarders and coaches, Ben says he's had his naysayers, but has ignored them. "There were a lot of people kind of looking over the bat saying 'oh I don't think this guy will be any good, some of those early coaches [thought I was] just snowboarding for fun. They never thought I would make it to the next level and that's kind of pushing me more to make it," he said.
Ben is an ambassador for Steptember this year, an awareness raising initiative for The Cereberal Palsy Alliance; Australia's leading research institute and support structure for families living with Cerebral Palsy. He's calling on people to sign up for Steptember and walk 10 000 steps a day to raise funds for research, to help those that can't make those steps without The Cerebral Palsy Alliance.
To find out how you can get involved just head to the Steptember website.
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