"We discovered Adrian had DS about 20 minutes after his birth. It was a roller-coaster of emotions and we had absolutely no knowledge about what it meant for Adrian and his future. We were thinking, where do we get information? What do we do next?

I’ll never forget the red booklet from DS NSW that we were handed in the hospital. It made me realise that we were not alone, and that there were a lot of other people who had been in our shoes and could advise us going forward. It’s so important that there is a source of information that people know is reliable, especially now when there is so much information available online it’s difficult to know what to trust.

After that Michelle and I feverishly read every article and every word that came out in the magazine."

"But what makes the association so invaluable is that you can actually ring someone, a real person, and talk to someone who has experienced what you are going through. There have been so many times when behaviours had us confused and talking to people at the association gave us so many ‘aaah!’ moments."

"When Adrian started school the teachers were very open to information and support and we were able to share teaching resources from DS NSW with them to help support Adrian in his learning.

The workshops are also really helpful - when anything came up Michelle would drag me to a workshop on what was needed.

We also realised early on how great the library was and how much money it saved us – there are so many books out there but you actually don’t need to buy them, you just need to read them."

"One of the best things for Adrian was that the association was able to put us in contact with other families – that’s how we met Mark and the boys are still lifelong friends – as far as Mark & Adrian are concerned they are ‘bros’."

"Adrian now works as a Bush Regeneration Office at Bushlink and he loves it. He started off doing volunteer work and now he’s actually doing four days a week of paid work.

I’ve seen what they do and it’s unbelievable what they can get done in even just half a day. They also do a lot of work with schools, primary schools, so it’s very empowering and rewarding for him – he goes to work like we all do and he works out in the community so he is contributing just like we all do.

He’s also met a lot of great friends through his work. His friends from Bushlink come over sometimes for the old BBQ – Adrian’s always organising social activities – our biggest problem is trying to fit them all in! "

"Adrian has a good job that he’s passionate about, has great mates, plays sport – if I could go back in time to when he was born I’d tell myself – don’t worry! You are not alone and this will turn out to be only a very small part of who your son is."

"We have been members for 24 years and will continue to be members. We also do a contribution every year as well.

I always say that it’s important to continue to support the Association because we are very grateful for the help we received and we want to make sure that other families have access to that same support in the future."