WATCH: Sarah Johnston talks about the difficulties in navigating life with a child with a disability while living in regional NSW.
Category
š
NewsTranscript
00:00When you receive a diagnosis for your child I guess everyone makes a bit of a
00:05decision. Do you go to where the services are or do you stay where you are and
00:10that is something that I have considered pretty deeply and look at the end of the
00:17day happiness really doesn't matter. We are country people this is where I've
00:21been for six generations so the Central West is home. I guess when when your
00:30child has a disability you really need those services but you've also got to
00:37live life so it's really important that we also are able to access the services
00:44that we do need here in the Central West. And what do you want to see brought out
00:50to the Central West? What can make your life and your son's life easier? So in
00:55the Central West if we could bring Napa out here it would obviously
01:02make our lives a lot easier. We would be able to come out and come out to
01:07Orange rather than go to Sydney. I guess going to Sydney is such an expensive
01:14thing to do and a huge commitment especially for people that are
01:19looking after children with disabilities. We don't just have the
01:23luggage that a typical parent would would take to go away. We have special
01:30beds that we need to take, we've got wheelchairs, we've got all of the bits
01:35and bobs that you need to complete your therapy sessions. So it is logistically
01:41really tough. It's also really tough on families for mental health all the rest
01:47of it. I have noticed with Ted for this intensive in particular it's been his
01:51best intensive yet and there's no doubt that he's in his own territory. He's in
01:56the Central West, he knows where he is, he feels more regulated, he's at home and
02:02I'm more regulated. I can handle it better so I'm able to go home and tag
02:09team with family if I need to and I know where everything is before this before I
02:16received a diagnosis for Ted. Driving in Sydney would have been something that
02:21terrified me and I honestly wouldn't have been able to imagine myself doing
02:27that but I that you know that's something that I have had to conquer
02:32and I've really had no choice at that. So it's a lot nicer being in Orange where I
02:39know where everything is, where I know how long it takes to get five kilometres.
02:44I know what traffic's like, I know how to navigate you know if there's roadworks.
02:51So it's not a major impact, it's not stressful, there's just something about
02:57being in the country and it's really important to stay true to who you are as well.