The NDIS has been a pretty good thing for Reagan and his younger brother Declan, who also has autism. Itโs funded some pretty intensive work with his AAC device, and they have a fabulous support worker, Indianna, whoโs been with the family for years (sheโs even written a picture book based on the boys, calledย Quirky Quentin).
The motorbike
Over the past year, Reagan has shown more and more interest in Garryโs motorbike, and had started going on the back for short rides with his Dad. Itโs been a pretty awesome bonding experience for the pair, as Garryโs 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 Reaganโs NDIS plan. Traditional therapies werenโt helping with hygiene, nor his chewing. We started talking about what were Reaganโs 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 Reaganโs chain.
We can work with that, I said.
The big idea
The idea ballooned and grew into a month long trip across four states and a sea.
Garry grabbed the idea, built a plan, bought a trailer and some more safety gear and last week they launchedย ASD and a Kawasakiย with Reagan and a bunch of their friends at a local pub. Theyโve 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 Reaganโs NDIS plan could be used to support the trip and Reaganโs goals.
The NDIS
So, how does the NDIS fit in to all this?
- Without NDIS, Reaganโs 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 Reaganโs 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 Reaganโs 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 brotherโs 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 Declanโs 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!)ย
Kicking goals
Theyโre only at day five, and Garry and I have been on the phone tonight. Theyโre tired โ they crash early each night, and Garry forgot his pillow, which sounded like the worst thing that had happened so far!
Reagan isย 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.
โItโs working Samโ, he said.
As Garry broadcast at the pub last week, just a few nights before their adventure began โ โThis just wouldnโt have been possible without the NDISโ.
Indeed. Well done Reagan, and his family, and the NDIS.
Sam Paior
Director, Support Coordinator and NDIS Specialist,ย The Growing Spaceย
Board Member,ย CountMeIn Foundationย
Disability Advocate
Solo Mum of two sons with NDIS Plans