In this episode, I’ll be talking to the wonderful Stephen Golding from Ignition about mental health and relationships.
In this episode, I’ll be talking to Doris Blowers, a mother of two sons who are participants in the NDIS and one daughter who isn’t. We’ll be discussing some of the difficulties she faced over the years and how she overcame them.
Jonathan: Hello and welcome to the first ever episode of The Self Plus plus incremental podcast, Improve your mindset to become more independent. My name is Jonathan Laloz and I’ll be your host. In this episode, I’ll be talking to Doris Blower’s, mother of two sons who are participants in the NDIS and one daughter who isn’t. We’ll be discussing some of the difficulties she faced over the years and how she overcame them. This podcast is brought to you by Self Plus Plus Mentoring program and online community. Where participants build the mindset they need to become more independent. Visit our website at selfplus.plus.
Jonathan: Doris, thanks for joining us on our first ever broadcast is called Incre-mental. So tell me a bit about yourself briefly.
Doris: Born, raised, have three kids. I have two boys with special needs. I have one with autism. And I have another one with that has a diagnosis that undiagnosed and was still trying to find out what it is. I guess I’ve always struggled with life with my kids. I’ve separated from their father. So there’s a lot to this and a lot of trouble I’ve had with the NDIS.
Jonathan: Tell me a little bit about the story about getting your sons into NDIS. Some of the difficulties you were having.
Doris: First and foremost, because of my oldest son, I found out he had the disability but actually didn’t have the diagnosis yet.
Doris: We were still able to get the NDIS, but I’ve had drafted that crap with the NDIS and I have to be honest.
Jonathan: So what sort of crap did you have to deal with?
Doris: From when I got, I got taken to a meeting and I met with like seven or eight people that helped and supported and everybody else from the background was amazing. But then I give you a bit of paper and they say you need to find your coordinator or you need to find your support worker. But then they don’t help you.
Jonathan: So you had no idea what a support coordinator is?
Doris: I knew nothing about that.
Jonathan: How did you end up finding your support coordinator?
Doris: A lot of work, a lot of back and forth. And somehow I ended up with community services and all that stuff. And I don’t know. I can’t remember how it affiliated together. But somehow I found them. And when I found them, I. I went on with some bloke come when he originally started and he was amazing and he just got the ball rolling with everything. But it took three years. Of NDIS plans with my oldest son to get this to work properly. And I’m still with the plan. They’re amazing, they’ve been great. My coordinate is amazing and yeah, everything good and everything that needs to be done she’s helped me with.
Jonathan: So did you have troubles with getting the evidence you needed to be accepted by the NDIS or was it more after the fact.
Doris: There was more information to my older son in his case that helped me get the NDIS. But it’s now we’ve got to fight for another diagnosis for him to see if we can.
Jonathan: What are some of the things you wished you knew back then, that you actually know now?
Doris: Who to contact, that when they give you when they give you the NDIS and they give you a local area co-ordinator, that local area coordinator helps you. Just doesn’t say, here’s the paperwork, here’s the email. Go, deal with it yourself.
Jonathan: Some more guidance?
Doris: Lots more guidance needs needs to be done. It was horrible what I went through for three years.
Jonathan: Three years? And that just going back and forth
Doris: Back and forwards. No one would help me. And every time the third time I went for a review, the person that did the NDIS review with me literally told me I was not entitled to anything again because we hadn’t used any of his supports. But no one told me how to use my support. No one instigated it. No one helped. No one. They told me I needed this, this, this, this and this. But it’s like, well, how do you do this, this and this and use this.
Doris: If no one will help you.
Jonathan: Do you put it down to a systemic failure overall, or is it just that particular people you were dealing with, do you think?
Doris: The systemic failures, it failed everybody apparently back then and it’s still failing people? I can still hear stories that people are saying that is still not right.
Jonathan: And the level of support before your plan was accepted, that was difficult for you as well.
Doris: Yeah, very difficult. There was no support. No one would help me. No one would do nothing. No one would believe me. No one would. Yeah.
Jonathan: Some of the bigger obstacles for you would be the financial obstacles getting that evidence.
Doris: Yes. Because we had to have tests done or we had to go have tests done. But because I ended up getting all the stuff done with Centrelink to do with a carers payment because I am his carer, because we’d done all the Centrelink paperwork, I then had the proof that it was the disability was there and that how the ball rolled with this.
Jonathan: So going back before even the NDIS came into play, what were the early indicators that you felt something was wrong with your sons?
Doris: Both my sons, my older son always had problems in general, wouldn’t sit still, but then it was my younger one that was my main concern. And yes, admittedly, I didn’t. He was a little bit smarter in the brain and he said things that made you think nothing is wrong or you don’t realise. But because I monitored my older one more than I monitored my younger one and we tried. Didn’t mean to do, but some parents do. I found out that when we wanted to get the younger one tested or wanted to get the younger one checked, no one believed me. So we had problems back when he was in year six and no one believed me and things went crazy and he went crazy at school and no one wanted to help him.
Jonathan: So there are behavioural issues?
Doris: Oh, behavioural but no one believed me. They all thought it was trauma of the separation from me and the partner. But then I found out later on it was the trauma of that. But the trauma triggered it. To come on quicker and harder, it was come up more visible. When the separation happened.
Jonathan: So what led you to believe there was an issue with your youngest while he was at school?
Doris: He started doing silly things and I can’t explain it, but he was starting to play with, not like weapons, but he was coming home with elastics and sticks and he was acting like he needed to protect himself. But I don’t know the full story behind that, and I still don’t think I ever will. But then there were situations where I would go to school and he wouldn’t want to go to class or he wouldn’t sit in class or, they couldn’t handle him.
Doris: But they wouldn’t put him in the special needs area like an independent learning area. So in the end, what they did is, as it is I don’t like what they did. They literally moved him from the, not like in the classroom, but where you meet where they have the class, where they have to class a little section. And behind it was a little table where the little table was, they set him there and sat him on his own. They’re still monitoring. They still watched him. So then he would learn to be independent, but he never actually had to be involved with the class. And they never encouraged him to be involved with class.
Doris: So that was like a six and then, you know, we had a lot. I had a lot of trouble. I tried to get him tested. No one believed me. No one understood me. So that went down. Then he went to go to high school and the problems continued even more, that he couldn’t cope. He couldn’t sit in class and he got into such a routine that someone actually told me when he went to one of the other special schools, because I finally managed to get him to a special school. But they actually told me at one of my meetings that he was so trained to be independent and be alone that he was never, ever gonna be I’d be able to be in a classroom again, because that’s what the primary school had taught him to do.
Jonathan: So that led to some social interaction issues?
Doris: Oh, he wasn’t going to associate with anybody, he wasn’t spending time with anybody. And he was actually meeting with boys that were being naughty. And doing stuff with them that shouldn’t have been done and make people realize that something was wrong. But no one believed me again.
Jonathan: And so that sort of behaviour is still going on as it stands.
Doris: Since all that stemmed, it stopped it. We managed to get his year 10 with a lot of grief and a lot of trouble. That a lot of that stopped. But at the moment, still a lot of independence, he’s will sit on the console.
Doris: If you could put him in a console all day, he’d sit there. But I’ve tried to pull him out of that, too.
Jonathan: What have you found to be some of the biggest challenges before and after the NDIS came in, so, start with before.
Doris: Oh there’s lots of challenges. No one believes you. No one wants to talk to you. No one understands you. They think you’re just a mother.
Jonathan: What about from your son’s perspective?
Doris: Older one I’m always going to have problems with because of everything. A lot of what he’s dealing with now to do with this disability, I suspect. I might have to. And it’s a genetic thing. And yeah, we found out that it was my brother and my mom and everybody else, but. All that. Yep. And my younger one, if I hadn’t affiliated him with one of my friends, I probably wouldn’t be where I am with him now.
Jonathan: So what are some of the challenges you’re still facing?
Doris: Still trying to get the boys organized or still getting the boys in a routine. Still trying to get him get the younger one up and showered and ready and motivated. Day to day tasks, but that’s day to day tasks with everybody.
Jonathan: And so since the NDIS has come into play, that’s changed them quite a lot?
Doris: Yes. Well, now the old one table to get shoes that I couldn’t really afford because they’re like three hundred dollars a hit and they’re not specialized shoes, they’re just just normal sneakers and boots or whatever? But, you know, they’ve got to be done to fit his foot and all that stuff, so. Yeah.
Jonathan: And so it’s in general, it’s increased their quality of life.
Doris: It increased their quality of life. They’ve increased their help. They’re more. I can actually ask for more help or I can have other things done. And and lately, with everything that’s been happening, they might even be able to get laptops. You know, we’re still trying to find that out.
Jonathan: Tell me a bit about that. You’re having issues with it.
Doris: Oh, yes. Yes, I am having big trouble with that. I think there’s a lot of how do I put it I could pick. I don’t want to say rudely.
Doris: I don’t like some of these situation, but it’s a case of they tell you that you’re entitled to this and you can have this, but then you go to this place and this to place the order for these laptops and they’ll tell you I can’t do it as a sales order, that it’s got to be done as a quote.
Jonathan: So there’s a lot of red tape.
Doris: Oh, there a lot of horrible red tape. But then a lady was standing behind me and she said, I have done this, my dear, and I did do this. And it was done as a quote. And then my plan manager contacted her to transfer it to a sales order. So then the bloke said to me again, I’m going to do a quote.
Doris: I said, no, you need to do the sales order. Yes, it finally did get done. But that was one hour of mucking around that I could have been spending with my kids. There’s a lot of red tape.
Jonathan: And so what what are some of the sources of information that you’ve found helpful in trying to overcome the issues that you’ve had?
Doris: Mine are, because I can contact my coordinator at any time. So you really got to find a coordinator that you can work with. And when I found out that my youngest son was having a review done in the next couple days, I contacted my coordinator and I said, what’s going on? This is going on. This is going. And she said, well, you don’t really have to do nothing. I’ll do all the paperwork. I’ll put all the report together. You just sit back and accept the phone call and agree to all of it. That’s how easy it is now. But it was never that easy before.
Jonathan: So it’s just a matter of you having to find that support.
Doris: Yes. And if you can find someone, it’s amazing.
Jonathan: So if it wasn’t for the intervention of the NDIS, where do you think your sons would be today?
Doris: Probably on a street somewhere. No, I don’t know. I’ve always been supportive of them. I don’t know where they would be. Just the NDIS has made things a little bit easier, made things a little bit harder in some way.
Doris: But in some ways it hasn’t, if you know what I mean. It’s just a small thing for them. We can have behavioral specialists invovled. We’ve had OT involved, but then it’s done. But it’s there. But then they’re working in the background, so you don’t really see them. But they’re training up with the workers that work with my kids.
Doris: So that’s where it’s all different.
Doris: And some of the money that I’ll be watching, going through my plan manager and some of that money to go through it, I think, oh, my God, where would I have found that one? You know, it’s like scary that. If I had to fund all this, I wouldn’t be able to do it.
Jonathan: So what do you see your sons in the future? What what are their dreams and aspirations?
Doris: My oldest son would like to go into mechanical. He’s looking into going back to CIT, which I’m very proud of him for that one. My younger one is flourishing is amazing. He’s enjoying what he’s doing. I think both my boys will be good in the end. Well, I hope.
Doris: I hope they will be.
Jonathan: Well, thank you so much for your time, Doris, it’s been a pleasure to have you on our first ever podcast, incre-mental.
Doris: No problem. Thank you for having me.
Jonathan: Thank you for listening to the first episode of incre-mental. Please hit the subscribe button so you can get notifications when our new episodes get released. If there’s anything you’d like us to talk about on this podcast, please visit our website selfplus.plus and get in contact with us. Until next time, see you soon.