Reagan is 16, and autistic. He uses his behaviour to communicate and is just starting to use an Augmentative and Alternative Communication device (AAC). He’s into watching the same bits of videos many times and has probably watched the Stuart Little movie many thousand times.
The NDIS has been a pretty good thing for Reagan and his younger brother Declan, who also has autism. It’s funded some pretty intensive work with his AAC device, and they have a fabulous support worker, Indianna, who’s been with the family for years (she’s even written a picture book based on the boys, called Quirky Quentin).
Over the past year, Reagan has shown more and more interest in Garry’s motorbike, and had started going on the back for short rides with his Dad. It’s been a pretty awesome bonding experience for the pair, as Garry’s interest in watching Stuart Little with his son waned many years ago.
In May, Garry and I sat down to nut out some ideas on how to make the most of Reagan’s NDIS plan. Traditional therapies weren’t helping with hygiene, nor his chewing. We started talking about what were Reagan’s genuine interests. When did they know he was feeling really good? And how could we make the most of that to help him reach his goals?
The motorbike. It was when he was on the back of the motorbike, away from his house and his little brother, with his Dad, on the back of bike on the road, that yanked Reagan’s chain.
We can work with that, I said.
The big idea
Garry grabbed the idea, built a plan, bought a trailer and some more safety gear and last week they launched ASD and a Kawasaki with Reagan and a bunch of their friends at a local pub. They’ve raised more than enough money to cover the costs of the trip (the rest is being donated to CountMeIn, a not-for-profit aimed at encouraging Universal Design in public spaces).
Meeting with his NDIS Plan Manager as well as his me, his Support Coordinator, we brainstormed further ideas about how Reagan’s NDIS plan could be used to support the trip and Reagan’s goals.
So, how does the NDIS fit in to all this?
- Without NDIS, Reagan’s goals would never have been so clearly defined.
- NDIS paid for a Support Coordinator, who Garry used to help him think of creative ways to meet Reagan’s goals.
- NDIS funds were used to purchase most of an Apple Watch with falls detection and GPS, so if the unthinkable happens and they come a cropper, emergency services will be notified within a few minutes, or if Reagan and Garry get separated at a petrol station, or accommodation, Garry will be able to track Reagan and find him (and Chrissa can track them both from home! Many thanks to Apple for a generous discount)
- Funds from the NDIS are paying some family friends, who are coming to meet them half way through the trip, to watch Reagan for a weekend to give Garry and Reagan a short break from each other.
- NDIS funds were used for Reagan’s speechie to add a whole bunch of trip related PECS (Picture Exchange Communication Systems) to his AAC device, and to help build some social stories about using new toilets and sleeping in a different place almost every night.
- Funds from his little brother’s NDIS plan will be used to support Declan and his Mum, so he is well supported and she can keep working while Garry is away.
- NDIS funds from Declan’s plan will be used for him to have a weekend at short term accommodation so Chrissa can come and meet Reagan and Garry along the trip (Chrissa is already missing her big boys so much!)
They’re only at day five, and Garry and I have been on the phone tonight. They’re tired – they crash early each night, and Garry forgot his pillow, which sounded like the worst thing that had happened so far!
Reagan is ALREADY KICKING GOALS. Just a few days in, and his hygiene goals are getting smashed. Garry, despite his sore butt and aching bones, was just beaming on the end of the phone.
“It’s working Sam”, he said.
As Garry broadcast at the pub last week, just a few nights before their adventure began – “This just wouldn’t have been possible without the NDIS”.
Indeed. Well done Reagan, and his family, and the NDIS.