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An aspiring author thriving with the NDIS

Dec 03 2018
Rohan Sykes wants to be a writer, the Prime Minister of Australia and a fighter pilot.

Lofty goals for any 11 year old, but especially one for whom the world carries more than its fair share of challenges.

With a combination of Asperger’s Syndrome, muscle dyspraxia, sensory issues, central sleep apnoea, and facial recognition disorder, Rohan struggles with everyday tasks. But according to Mum Shelley, he is “the most positive and hilarious kid you’ll ever meet”.

“He’s got a real can-do attitude and, even when something is hard, he’ll give it a go. He always sees the cup half full,” Shelley said.

“Rohan tells me he loves me every day, he hugs me every day, he tells me I’m awesome every day.”

Rohan is home-schooled, where he is able to concentrate on therapy and his beloved writing.

“At school they couldn’t support him as much as he needed to be supported, so even though he’s crazy smart he was failing and he was being bullied,” Shelley said.

“He got beaten up at school and lost a tooth when he was in kindergarten after being punched and kicked in the face. Because he was failing his school work, he was also starting to think that he was stupid and label himself in a way that wasn’t helpful.”

At home, Rohan is able to focus on channelling his creativity and imagination into stories on everything, from science fiction to zombies, to werewolves to My Little Pony – the latter set in a post-apocalyptic fall-out setting where a magical war has destroyed the planet.

“Inspiration hits him and he just has to do it right then and there. So we’ve got about 50 books started and two that are finished,” Shelley laughed.

At home with Rohan is 10-year-old sister Freya who is also home-schooled and eight year old brother Bryn who has Fragile X Syndrome and is severely intellectually impaired.

Rohan and Bryn entered the NDIS last year with support from the Carers Queensland’s Local Area Coordination program.

Before accessing the NDIS, the family received only three hours a week of carer support, which left single mum Shelley at breaking point.

Rohan and Bryn now receive considerably more carer support hours through the NDIS, in addition to funding for speech, occupational and physio therapy.

Bryn also receives funding for continence aids, feeding tubes and syringes as well as carer support for three-hourly PEG-tube feeds and nappy changing.

The funding, according to Shelley, has been a “God-send”.

“We have someone here five days a week, and I have someone to help with running around to therapy.”

“The carer support that we’re receiving affects the whole household. By having someone who can take Bryn to an appointment, it means that I can be here with Rohan writing stories.”

Rohan is now able to go to the gym three days a week to help manage the pain and low muscle tone from his muscle dyspraxia and hyper-mobile joints.

Shelley said whilst Bryn would always need a lot of support, the potential outcome for Rohan from his NDIS-funded therapy could be life changing.

“It’s making a big difference. Getting him on the right path, and believing in his potential, is so important.”


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