Meet Joe and Helen
“We have three boys. Joe, our youngest, has Level 3 Autism. Joe is awesome. We love him. We are all better people for having Joe in our lives but it is a hard gig at times.
Joe is non-verbal so most of his negative behaviours stem from being misunderstood.
He’s an active boy who loves to get out and about. Joe loves high energy activities: jumping, going to the beach, bushwalking, swimming and being on boats.
Joe doesn’t like to stay at home. Joe’s always putting his bag on his back, his shoes on his feet and walking around the house with the car keys. These are signals he wants to go out.
Joe has two older brothers, and he sees how active they are – they play lots of sports and have friends over. But his behaviours have an effect on his siblings. Being teenagers they find it all embarrassing. They are at the age where they just want to blend in.
Joe’s not happy to sit on the sidelines and watch his brothers play footy on Saturdays and Sundays. That’s why we started accessing What Ability support workers on the weekend.
When he comes home, he’s always happy and content. All that sun and fresh air means that he eats better, sleeps better and doesn’t hit out as much at home.
Behaviourally, he’s just much more settled. It’s good for him to experience new things. Although admittedly, like most people on the Autism Spectrum he’s quite rigid with his likes and dislikes.
Doing things together as a family rarely happens. We prefer staying at home because sadly it’s just easier! If we do go out for dinner or to someone’s home, we have to do so much pre-planning.
We have to go out early, sit in the corner or eat outside. We need to order and eat fast. Joe runs back and forth to the toilet due to anxiety and we’re all on high alert. It’s really not relaxing for anyone in the family. We don’t get much of a chance to catch up properly.
We can’t go overseas anymore either. I’m from New Zealand and we used to have family holidays to visit my family but after our last trip we decided it was not worth it. We’re not going to renew Joe’s passport.
Working while caring for a child with a disability isn’t easy. Some parents are forced to quit in order to care for their child. I’m lucky that I’m a nurse so I can do the morning shift and be home just after 3pm when Joe gets home from school. My husband Pete runs a small building company.
With the NDIS, inevitably there is never enough money. Last year we forked out money from our own pocket for Joe to have experiences because there just wasn’t enough funding.
It would be nice to do some activities as a family with Joey. I do feel like we do miss out on these moments (experiences), but he prefers his high-energy What Ability friends to go out with.
He loves hanging out with the gorgeous young support workers from What Ability. Joe loves the What Ability cars, the T-shirts, the puffer jackets, and they all have so much energy and enthusiasm.
The participants see and feel that and have a great time. It’s really good for the wider community too – to see people with a disability accessing the community and having a go!
I got a video recently of Joe on the flying fox. Watching it was pure delight. He was laughing and loving it and after a couple of attempts he was able to do it independently.
Getting that video means the world because he can’t come home and tell me what he does. He loves sitting watching the footage and showing me.
I can say: ‘That looks so fun, look at you go.’ He sees and feels my joy at seeing him master and experience something new!