A Wheelie Good Chat
A Wheelie Good Chat is hosted by me, Sam Cole. I dive into real-life experiences of living with a physical disability.
With raw honesty and a touch of humour, I explore everything from daily challenges to societal assumptions, shining a light on the stories that often go unheard.
Each episode features open conversations and reflections that aim to break barriers, challenge the norm and inspire more inclusive thinking, one chat at a time.
Follow along on Instagram: @awheeliegoodchat | @sam.bamalama
A Wheelie Good Chat
36. Part 2 - Mum & Me: Teenage Angst, Brain Surgery, and Finding Our Way with Di Jones
Moving from a small country town to a massive Perth high school was life-changing for me, but not in a good way. I went from being “Sam” to “just the chick in the wheelchair,” and the isolation hit hard. I had no friends, no independence, and my mental health spiralled.
In this second conversation with Mum, we revisit those volatile teenage years, the suicidal thoughts, and the heartbreak of Deep Brain Stimulation surgery, something I believed would change my life for the better but instead left me worse off.
We also talk about the prejudice I faced outside of accessibility, tertiary institutions saying they “couldn’t accommodate someone like me,” providers misunderstanding my needs, and people speaking to Mum instead of me.
But through therapy, resilience, and a lot of difficult conversations, our relationship came out stronger. We found our way through the darkness and into something better.
If this episode has raised difficult feelings for you, please remember support is available. You can call Lifeline on 13 11 14 for 24/7 confidential support.
Thanks so much for listening to A Wheelie Good Chat! Your support means the world.
Follow along on Instagram: @awheeliegoodchat | @sam.bamalama
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I want to start this episode of A Wheelie Good Chat by acknowledging that I'm recording on Wadjuk Noongar country. I pay my respects to the Elders, past, present and emerging. Always was, always will, A boriginal land. I'm your host, Sam Cole, and this is A Wheelie Good Chat where I get real about life with a disability and everything in between yes, even the not so PG stuff. I live with a condition called dystonia and I started this podcast to break stigma and share the things we as a society don't talk enough about. This episode contains discussion of suicide. Please listen with care and remember that Lifeline is available 24/ 7, on 13 11 14, if you need support.
Sam Cole:Hi everyone, and thank you for joining me on this episode. It's part two of the three-part little series I'm doing with my mum. Two of the three part little partly with series I'm doing with my mum, and if you listened to last episode, you would have been aware that mum and I spoke about the early years of my diagnosis, the shock, the changes and how we found a way through. But the story certainly doesn't end there. Today we're going to dive into my teenage years a big move to Perth, navigating friendships and my identity, and the decision to have a life-changing brain surgery. And hello and welcome back to my mum.
Di Jones:Hi Sam.
Sam Cole:And how are you feeling about the part one being out and about in the public?
Di Jones:It was a little bit daunting because I really don't share and haven't shared a lot of this even with friends and family, so it was a little bit different for me to actually talk about it. But, yeah, I felt quite good. I think there's certainly some things surrounding disability that people need to be made aware of from your perspective which you're doing and from my perspective as a carer and a parent.
Sam Cole:Yeah, I think it was a really very insightful for me. Like you said, things that you know, you don't talk about and things that I don't really ask questions about. So it was really good to, I guess, hear those things. Yeah, I learned a bit myself, which is great.
Di Jones:Oh, that's good.
Sam Cole:I feel a good place to start with. This episode is about moving to Perth and that decision and how it came about and I guess, my response to that decision that was made.
Di Jones:Okay, being in a small school that only went to year 10, there was always a decision that would have to be made that you moved on. Now, in normal circumstances that means boarding school when we were living, and be that another regional centre or be that Perth, and boarding school. But because that wasn't available to you, we had always known that it would be a discussion we would have about when we moved to Perth. As it turns out, you came down at the end of year nine. That decision was, I don't know. I suppose it was forced upon us because in the end, and the relative, the smallness of year nine, that decision was I don't know. I suppose it was forced upon us because in the end, and the relative the smallness of the classes, you would have been the only girl in your year 10 group. It would have only been, I think, three boys. So the decision, I guess, was forced upon us earlier than what we had anticipated. So we bought a property in Perth and we bought that in an area where the school had a very good reputation, not only school-wise but a very good reputation as far as a satellite class for kids with disabilities that couldn't and for all sorts of reasons couldn't access all mainstream schools or needed support to access mainstream schools.
Di Jones:Yeah, as a family, we discussed who would move to Perth. Jake was already here in boarding school. The first decision was made to leave him in boarding school. That would be better we felt for him because he'd had a lot of disruption in his young life already, like you. That allowed him to stay at boarding school because he was already there and do what he needed to do. The next thing was to decide how we would move to Perth. It was decided that I would move to Perth on my own, with you. It worked better for your dad with the farm. So we moved to Perth and, remembering I'd been away from Perth for 20 years, so I came back to Perth. I had my mum here at that stage and a few friends not very many and no other family at all, really. We moved to Perth and you started attending a high school, senior high school down here, which was really difficult for you, really difficult.
Sam Cole:Yeah, it was when you told me that this is something that is going to happen at the start of year 10, you're going to be at a different school. How did I take that? Because I can't remember honestly.
Di Jones:You were actually really good about it because the other girls there was three other girls in your year they were all coming to Perth. So it was going to be not only from an education point of view, but it was going to be very isolating for you. You would have no peers, so there weren't any older girls that were around, and the fact that, being a country town, you couldn't play sport, you couldn't participate, so socially it was going to be very isolating for you as well. But you took it really well. In fact you were quite eager to come down and I guess, like all of us, there was trepidation and worry. You were coming from a year of what? Eight children and you were coming to a school with a year group of cohort of 450 or something. It was over 2,000 at the school. So therefore it was very daunting. But I think you were also of the knowledge that it was something that had to happen.
Sam Cole:I remember so well the fact of my very first day going to this big school and I was just one tiny person and at Narem you could walk past a kindy kid or a year nine kid and you could still stop and have a chat and say hello. But going to this massive school it was so overwhelming, not that I expected everyone to know me, but there was not, that, I guess, feeling comfortable straight away and I felt so out of place.
Di Jones:Yeah, I do remember that and I found that and we had lots of discussions and lots of tears on both sides for that, because, while it was going to be long-term better for you, in the short term it was a really painful thing to do. Yeah, you went from being Sam and no one gave a toss that you're in a wheelchair and someone had to assist you with all these things to being and I think in your words you used that I was just the chick in the wheelchair and no one gave a toss about me. And I think in your words you used that I was just the chick in the wheelchair and no one gave a toss about me. And I think that was really while it was. You didn't have extreme bullying. There was certainly a lot of alienation, and high school in year 10, 11 and 12 was very isolating for you.
Sam Cole:Very much so it's not something that I like to acknowledge. That was a really difficult time for me, because I guess the fact that we moved our life or I guess you moved your life for me to have this great opportunity in Perth and the thought of dwelling on it made me feel guilty because, you know, it has uplifted your life for me. It's just such a difficult thing for me to have to admit yes, I look, I think, it being a, there's such incredible changes for you.
Di Jones:It's such a difficult time for probably all teenagers, whether they you know. It's an incredible change in you and for you to come and be. I guess you didn't have friends at school. You may have had one girl that came to visit once or twice and that was about it. You didn't have friends at school. You may have had one girl that came to visit once or twice and that was about it. You didn't have friends. You didn't go anywhere, you didn't participate in anything which in the early years we used to go back to Narrabong a lot because it was A safe place, that's right, Safe place having our cup full. So we'd go home, go to netball or football, whatever was on touch base with people we knew and that, yeah, we did feel safe about.
Di Jones:And I guess in year 11, it really started to take its toll on you psychologically, me emotionally, and remembering I was also at a time where I was going through menopause as well. Adding that into the mix, I wouldn't want to re-realize Of all the things I could go back to, that wouldn't be one of them. But I guess being an isolated teenager is one thing, but you couldn't even go to the shops by yourself, so you couldn't even get out from under my feet. It wasn't NDIS in that stage. So when we came to Perth, we had to link in with what was the LACs local area coordinators, of which there was a few before.
Di Jones:We got our long-term one and she was a joy because she really helped us. She got you funding to do things to access, but a lot of the people you used for support with your funding in those days were ex-Narrow Bank girls, so you had their support. They knew you, so you were still, I guess, had a bit of an encompassing, safe feeling yet again. But psychologically it took its toll on you and therefore our relationship was very tenuous. It was very volatile and there's things that I've never shared with people about our experiences because I don't think it paints particularly either of us in a good light. But it was also real, Like it was really. As I said, it was volatile. I didn't know how to react to your tempers. You became not wanting to be here. All those sorts of things were really yeah, it was shit, it really was.
Sam Cole:Yeah, absolutely. I guess at that time I was always thinking if I wasn't in a wheelchair, I would be doing this or doing that. As much as that's how I thought that was a really a very toxic thing for me, because I held onto it so much and I really focused on that, rather than just letting go, just saying, oh, this is my life and I can make it a good situation. But instead I was holding onto the possibility like I guess what it could have been.
Di Jones:Yeah, but I think also, in fairness and looking back, you were also a teenager, so you had a fair amount of angst, as it was anyway, remembering everyone always says, oh, sam's amazing, she goes out, she does things, but they didn't see how you sit and you watched. Friends, family, whatever grow up, have boyfriends. You went to your year 12 ball but you never went to anything else. You never went to your graduation. You never went to school dances. You never did those things and you watched all your peers do that and a lot of that was they'd have a river cruise.
Di Jones:Was it accessible? No, would you have to take someone with you? Yes, do you want to be a 15-year-old that's got a support person in tow when you're supposed to be at a dance? No, probably not. But at the time we were living that and that was hard for me to see.
Di Jones:So I guess, through year 12, you and I reached out and in a good time we got you to a doctor who put us in further touch with someone that was a counsellor and also a psych, and they put in place some critical care I guess critical, and I don't know if care is the right word, but it was critical that you could be in imminent danger.
Di Jones:So I also sought therapy to find out the best way that I could help you, because I was doing a really bad job of it and trying to maneuver it, navigate it the best way I could. And once we got you into that and got you some counseling and got myself some counseling because we didn't have anyone else my mum was aging I don't know that she would have understood. I had a friend in Perth who was a really good person and she still is a good person and she helped us through a few incidents. But we had no one else. We didn't have extended family. By this stage your dad and I were on a downhill slope and emotionally there wasn't that support and also he wasn't living it. So anyone that wasn't living it wouldn't understand.
Sam Cole:And I think it's important to emphasise when you say I didn't want to be here, I wanted to end my life, my thoughts were quite serious. I'm not saying it was just a passing comment, it was quite. Yeah, it was really scary for me and I remember just how lonely and isolated I was. And to just want to end it all because, I guess, ease the pain in some way, yeah.
Di Jones:Look, and I guess the hardest thing about that and now we talk about it was I couldn't help you. That's probably the thing that's always through. The last episode in this there was, apart from day to day, making your life as easy as I could and making sure all your needs were met, there was so much I couldn't do and as a parent and me, that's really hard.
Di Jones:That was probably the hardest thing I came to terms with and that I couldn't make you happy. I could sustain you and I could help you be the best you could be, but I couldn't make you happy. And if you had have been physically able, I don't know, but you weren't physically able to do damage to yourself in some way. But I never left and I may not have said this, but I've never left knives that were accessible. I always made sure they were out of your reach and you were very rarely left on your own for that particular reason, and you couldn't be left on your own for any amount of time anyway At that stage. Now we have a house that you can get around quite easily and it's quite different. So those things were different. And of course then, leading into year 12, even at school, exams were different. So you got extra time Not that it made any difference, no, but you got extra time. You got someone a scribe, but the thing is, when you did exams, you would have to read verbally, answer the question, then someone would have to write. Now they had to write exactly as you spoke. That was their job. That was really hard when it came to English and writing an essay, you have to think, speak it, watch what someone else is writing, then go no, that's not what I meant and they have to either cross it out or backspace it. So all those exams were such an incredibly stressful time, so that added to it as well. Meanwhile, from my point of view, I didn't work when I first came to Perth. I got a little part-time job that didn't really work out for me.
Di Jones:Then you went into year 12 and we started looking at deep brain stimulation, or, as we refer to it, dbs. Dbs is an operation that you had. It was initially, I guess, made for people with Parkinson's. They put electrodes into the part of your brain and they can interrupt the patterns. Now with Parkinson's disease and essential tremor, they also used it for essential tremor disorder. It interrupts and changes the brain patterns so that it stops people's tremors. Now you have electrodes into your brain, which of course is brain surgery, where they split your skull, go into your brain, place the electrodes. They run the electrodes in a wire down your neck. So through your skull, down your neck, and you have a neurotransmitter very similar to a pacemaker in your chest and that is programmed to your particular needs. So we looked at doing that.
Di Jones:There was a couple of people, young people in Perth who had it for different dystonias, who'd had really good success with it. Really good success You're only 17. One we went to visit and had lunch with lovely mother and daughter. The difference in her was phenomenal. She was then at uni doing teaching. So, along with our guidance and you being almost 18, and with all the information we could gather, and with the guidance of your neurologist, a neurosurgeon, their team of physios, ots and you go before a board, it was decided that you would be a candidate. Along with that came your diagnosis of dystonia. Now, that was because no, it wasn't because that's the wrong word, diagnosis but easier to access the op. It was a disorder that they were happy with operating on. You made that decision. You had it at the end of year 12. So you were 17 and a half.
Sam Cole:I remember going into the operation theatre and I think they asked us for every operation oh so what are you here for? Tell us why you're having this op? And I was like it's to make me walk. And I was so excited. I was like this is the best day ever. It's going to absolutely change my life for the better. Yeah, I was like this is the best day ever. It's going to absolutely change my life for the better. Yeah, I was like, really, I guess, holding on to this operation Because she's so fit as a 17-year-old. I had this big decision, but of course I was going to take her. Of course I wanted to be an able-bodied person and, I guess, do what I wanted to do.
Di Jones:for all those years I've been in a wheelchair. We understood and you understood at the time, that there was a possibility of death. But there's that possibility with all operations which, as a 17-year-old, you'd already discussed your death and funeral wishes with me. You wanted George Michael as a funeral song. It was always going to be George Michael and you reminded me of that going into the op Now, remembering you'd had 18 months of counselling, people guiding you to this and you were in a really good space. You'd come through. You worked really well and so had I. We'd worked really hard on ourselves and on our relationship and the triggers that were for you. And then you went into the op, the triggers that were for you, and then you went into the op just huge support from lots of people. You had everyone behind you because there was no reason to think that it could possibly be as disastrous as it was when you went in and we have footage of you you could stand. You could write with your left hand very limited, but you could write with your left hand. You could stand. You could write with your left hand very limited, but you could write with your left hand. You could stand. You could lean on a walker because of a whole lot of physiotherapies and OT and everything that you'd done. So you were up, you were physically able that when this worked you were ready to walk. So you were strong, you were young and you came out of the op.
Di Jones:They immediately turned the DBS on Now normally they leave it they turned it on, they started programming it and even before that there was a significant deterioration in your left arm. It was gone dead straight. Your wrist was twisted. You couldn't bend it at all and your left hand you had to relearn. With your right hand you lost the ability to stand. Your foot started to twist. Even worse, it was just a huge deterioration. With that came the utter incredible there's not enough adjectives to go around just disappointment of. Not only had it not worked, but it had made you significantly worse and therefore, again we fell into this huge abyss and by that time I had a fractured marriage, a fractured family relationships, a family that didn't understand where we were at and hey, a lot of that's because I don't really tell anyone. I didn't want people to think badly of you and you became particularly angry, particularly violent. Well, to you.
Di Jones:that is yeah, yeah, and once again suicidal. So we started over again, but in a really bad physical place for you. Then the next, I don't know. The next 12 months is really just a blur. It was endless appointments, a lot of work, reprogramming, going to Charlie Gardner because the Australian Neurology Research Institute. The people there were amazing, but they were also particularly frustrated that they could help very elderly people that had tremors, that they couldn't hold a cup of tea to people that were functioning every day and they couldn't help you and so that, yeah, it just spiralled. It was just for something that had held such hope and such results that we couldn't even begin to imagine. It was devastating for you, for all of us.
Sam Cole:I guess particularly for you, I think just the fact that I had held so much onto this operation and it was going to change my life. It's a wonderful thing not to have that much hope into something but at the same time, like you said, why wouldn't I?
Di Jones:Oh look, and if you hadn't had it, would we be sitting here six to 17 years later saying, oh what if? I mean, there was no reason to think that it would be anything other than good? And we'd done our B&B, I'd done my research, we'd talk to people, you'd talk to people, we'd talk to the professionals you were seeing a psych and a counsellor. So we had all those things in place and we were just absolutely flattened and I guess for probably 12 months I didn't really know which way was up.
Sam Cole:Yeah, it was such a difficult time, emotionally as well as physically. I thought I was going to go somewhere with this, but then for it just to crumble at my feet, and then even the doctors not too sure why my predominant arm was affected so much still to this day, it's just beyond frustrating. I think I've come to a place where I've no sorry, no, I think I have come to a place now to, I guess, let that go and not resent the operation as much as I used to. You know, there are times where I'm like, but it's not healthy, and then I guess, on the other hand, if I hadn't have done it and I'm sitting here wondering about this operation, who knows what.
Di Jones:I guess with the deterioration came and after that initial time was you still had alienation. So you still didn't have a friend group. You didn't see anyone from school and I know everyone loves you and they think why don't everyone? All your friends had their own lives so by this time they all had boyfriends. They all started traveling. You reach out to someone and they're out drinking and partying on a Saturday night. We're home probably with me nine times out of 10 or 10 times out of 10 at that stage. But you had no one In those days.
Di Jones:The service providers weren't set up for people with disabilities like you. They were set up. There was what we would call sheltered workshops, so there were workshops with people that couldn't access normal everyday work. So you decided to go to TAFE. Then we really started to see the prejudices for people with disabilities. You went to TAFE. They basically told you they couldn't accommodate someone like you, because I don't know what someone like you is. Obviously I'm still not sure. So you had to go to them and once again you did your research. You reached out to someone who was an advocate.
Sam Cole:Apple doesn't fall far from the tree with doing the research.
Di Jones:That's right. So we found someone who had gone to TAFE in a similar position to you he was a quadriplegic, I believe, and he gave you some tools to help you through. And his basic bottom line was you find your solutions and you go to them with your plan. And they had a disability officer and you went to them and they said oh no, we don't think we can help you. They wouldn't give you a scribe, they couldn't supply a scribe, or wouldn't I'm not sure which. And you wanted to do community service. Yeah, so you did two years. You did two certificates, three and four. Then you did a diploma and that gave you credits to go to uni, but with the TAFE, and this young man gave you the tools. So you got everything in place. You got your support, who would be your scribe, so you could access. You had more difficulty, but you had to go to them with that. Here's my plan, this is what I want to do and this is how I can do it. And they went oh, we don't know if we can do that, I don't know why. They didn't think they could. Anyway, so you did that.
Di Jones:But then, when it came to placements, you had to find your own placement because they couldn't accommodate someone in a wheelchair. So you had to find your placements, be that daycares or primary schools or whatever you did. I don't know whether those things still exist or exist as they did, but you had to always had to go with your own solution. There was never anyone you could go to and you've never been able to go in anywhere, say hello, I'm here, this is what I need Because you have to go. They don't know. A lot of times they don't even really care. You know a lot of companies and a lot of learning institutions. They talk the talk and oh yes, we're this with disabilities and with that, but they don't actually do anything. You know when you went to uni, what do I do when the lift doesn't work?
Sam Cole:Ah, we don't know, and that's the thing, tafe was 2012,. Yeah, 2011, 2012.
Di Jones:Yeah, 2011, 12, yeah was 2012,.
Sam Cole:2011? Yeah, 2011, 12. Yeah, yeah, so it's not like it was the 1980s.
Di Jones:That's why you're on here, a multitude of reasons, but I completely forgot about that Tay story because I guess I don't really think about that kind of stuff and I guess, once again, because you have to spend so much time looking at today and moving forward, you can't sit and we fought those battles and you have since have fought a lot more. But I sort of helped in those days and guided a little bit and I guess that's where I learned that you do get more flies with honey than vinegar. I was very much, probably more volatile and I've had to temper that because that really didn't get me that far and I've tried to teach you that and I think we manage quite well. I always advocated for you and now you advocate for yourself. But there's so many people that can't do that, so many people that boomers like me that support or care for children or, when we were younger, care for parents and things, but so many people don't have that ability to advocate for themselves and that I find really scary because it's a minefield and NDIS just adds to that as well.
Di Jones:A few things to come out of uni from my perspective was your new gains of independence. You found your people. You found friends. They were and I guess because your degree was social work, you found minded people so that and you grew in the way of being able to advocate for yourself, be able to organise your own support, liaise with agencies and groups and things like that, and by this time I was working part-time. I was really fortunate to get a job with people who knew us and knew our situation spasmodic part-time job which ended up being full-time and 12 years worth of work, and a company that, yeah, they knew us, they knew you, they were happy, really accommodating. So I never had to fight that battle, which made it easier for me to support you in that way, because I never had to worry about sick days or they allowed me very early on to log in from home and work from home, and because the people that I worked for liked you as well, they were quite happy for me to do that.
Di Jones:So I don't think that was the whole reason. I think I was probably good at my job as well, but that made it easier. So, I feel for people that have to work, have to fight for days off to take the person that they care for to appointments. I never had that. So therefore, my slate was clean in that way that I could move forward, and by this time I was divorced. So it was just you and me. Jake had left school, done lots of other things and home and happy on the farm by this stage, so everything else had fallen into place. You became far more independent. You found friends. Your life was never the same as this you still. Whenever you go anywhere, even now, you need someone with you. But the ability for you to stay home by yourself, too was more and more as you got older.
Sam Cole:Yeah, for sure.
Di Jones:So those things became easier, but the prejudices became.
Sam Cole:A lot more unavoidable, I guess, for me, because when I was younger you might have kept me safe in a way, but now it's my responsibility to face them and write the letter about how I was being treated in a work placement or in a job interview. It's not your responsibility anymore and it's not your worry anymore. I'm sure you worry, but I'm sure that alleviates as much because I'm able to do it myself now.
Di Jones:Absolutely and I support you in whatever and however you do. But I guess my difficulty comes in watching you have to struggle with everything and the prejudices are not only from people you don't know. And that's what's really difficult is sometimes the prejudices are from people that you think should know better, thinking you get special treatment because you're organised for you to go to Shannon Knoll and be backstage and you know what? Oh, she only got that because she's in a wheelchair. Yeah, probably. Hey, do you want to live the rest of her life and go backstage to a shit and hole concert? Those sorts of things. And they came from people close to us. And that's what was really difficult is facing those prejudices. I think sometimes prejudices are worse than accessibility the prejudice that people talk to me rather than you.
Di Jones:When I'm with you, I cannot or couldn't. It's less now. I couldn't step outside the house with someone and go oh, what have you done with Sam? Where's Sam? We're two people. I know that she's a big part of my life and my standard phrase was I don't know. But then I don't know where Jake is either.
Di Jones:And they'd say, oh, how's Sam? And I'd go yeah, both the kids are good, because it was always. What do people think I did with you? Lock me in the cupboard? What have you done with Sam? Where's Sam? I don't know, but she's 33, so I don't know where anyone is, sort of thing. It's those things. But the barriers that you face and prejudices getting into a lift during COVID and you saying I'm sorry, there can only be two people, and she said there is only two, pointed to me and said one, and pointed to herself and said two, knowing that it didn't matter what you said, she wouldn't have understood what she said. No idea, and that really happened. Yep, so those sorts of things sometimes are more difficult to manoeuvre and to deal with probably not manoeuvre, deal with than not having accessibility to a toilet, which is frustrating and should never happen. People like to talk to me rather than you, they think because you're in a wheelchair, having a child. Say mum, why is that person in a wheelchair? And the mother going, shh, don't say anything.
Sam Cole:It's okay, we know I'm in a wheelchair. Shh, don't say anything. It's okay, we know I'm in a wheelchair, that's right.
Di Jones:And the person being so mortified that you actually address the fact that the young child had asked their parent. Be honest, we talk about it and, as you said, it's not a surprise. You're in a wheelchair. Oh my God, I'm in a wheelchair, I'm not deaf.
Sam Cole:Yeah, and that's where it stems from Telling a child to shush about. Asking questions about someone with a disability or some visible differences just stems, when they're an adult, from keeping them sheltered, not interacting with people with visible differences, rather than just saying, oh, that person's legs don't work and going oh okay, and we found that recently.
Di Jones:The simplest answer to a little tot is my legs don't work. That's all they want to know. Why don't you walk? My legs don't work, that's all they want to know. Why don't you walk? My legs don't work, oh, okay, she doesn't need to know the ins and outs of neurological disorders. No, I mean, it's quite okay to say for children, but for adults to ask inappropriate is another thing. They're another thing. You get lots of people being inappropriate, being in your face, hugging you, those sorts of things, when you don't have the ability to recoil.
Di Jones:Yeah, absolutely Although you do recoil but you don't have the ability to step back or not engage with those people, whereas if someone did it to me and I didn't want to hug, I can just… step back, and you have to be quick enough to say don't hug me absolutely, and I think like another point that I would like to discuss.
Sam Cole:If you can remember I guess it was around the following year after I got my DBS, so I got my DBS in the November, I think. In the February March, I was going out with an organization for like social support and that kind of thing. I think it's important to discuss this. If you can remember what I'm talking about, yeah, I can. So first of all, it was like a big thing for us to get that support and just be out I think it was like a couple of days a week at this stage and it was before NDIS and to give mum a break to socialise and that kind of thing. When they came over, maybe a couple of days before, I remember, I was explicitly saying I want to make sure the support is appropriate.
Sam Cole:Yeah, exactly yes. And the people that I'm with, because I would have preferred one-on-one, but they're like, oh, it might be some other people who are in similar situations, they might have physical limitations I'm like, oh no, that's fine, that sounds good.
Di Jones:Obviously, it was a whole new thing for me, but I understood that it needed to happen for us you probably need to say that you were put in a group situation with people who were intellectually disabled and so their life skills and social skills and behavior wasn't appropriate, and you were taken to a shopping center with all these people and this is not disparaging, being negging those people but you were put in a situation where these people couldn't converse, didn't have social boundaries, and you were just left with them. So you went into shops, sat in a food hall with them. You had no interaction with those people. I think that one of the really hardest things was that you felt that you had to do it because you needed to have time away from me and you didn't tell me for days. That was really difficult, but, once again, is service providers not providing, taking the money and not providing the appropriate support that led you to use your own support, find your own support, which you still do to this day. Yeah, you don't use service providers.
Di Jones:No, For that reason, for that reason, and even you know they turn up to take you out and they have it all written on their car, rock up in a van, or their work uniform, all those things, and that's fine if that's the support you need. Yeah, but you didn't need that. You were so explicit about what you wanted.
Sam Cole:Yeah, exactly, and I was 17 years old. All I remember is just wanting the ground to swallow me up, because I'm like how can they put me with these individuals who I can't even have a conversation with? I can't even sit in a food court without everyone looking, because they're screaming and shouting and throwing themselves on the ground, which obviously I feel bad for them.
Di Jones:I think we have to make it very clear that you're not denigrating those people. There's no judgment on them because those groups and that works for those people. I think the point was you were spending your funding. That was really difficult to get in those days, still is but spending your funding on giving it to a service provider who wasn't providing what, the service that you required. I think that's a difference we have to make here. It just wasn't appropriate for you, but I think that's sort of along the way and that that led you to getting your own support, as I said. So, therefore, you started, you put flyers at uni, at TAFE, word of mouth, people who did support, and some of those people were there for a reason, some for a season, and some are still around. You know that you still catch up with every now and then and for all different reasons.
Di Jones:But once again, through that time for you, every one of your friends and acquaintances were living their own life, fast forward to when you're at uni. If they were doing uni they'd started their jobs. They all got jobs when they left uni. They all moved, they all travelled. But in those days the Sam they would see would be different, behind closed doors, those endless weekends of just being you and me. I wasn't going out because I didn't have the support network down here you being home with me, me not going anywhere and I guess it took a while for that to change. I guess the spiral of being home all the time and not really going out and not having the friend base or the family base really made a difference to our life down here. I certainly still had contact and still do with friends and family in the country, but day to day there was only ever you and I.
Sam Cole:Yeah, no for sure. And I guess a question for you to wrap this part two up is what's the biggest lesson you think we both learned from those years that therapy is?
Di Jones:a really good thing that finding someone who can navigate, help you navigate those things, is a really important thing, and I think from my perspective, for both of us that was really important. Yeah, I guess I did learn how important it was to and it seems really silly because you were so much older. But not sweep the small stuff, because having you here and now, the relationship we've got, all that brought us here Would I want to go back and do it differently? Yes, please, but I think we learn a lot about our relationship moving forward for you to be out of uni and being a fully fledged adult and me being older, that's it.
Sam Cole:And I do just want to say I'm not too sure if I said it at the start of this episode, but I guess the way that I treat him is something that I have to live with for the rest of my life. I can say sorry, I can, you know, do all these kind of things. I obviously regret my actions towards you, Mum, but I'm not just saying this to resonate on this episode.
Sam Cole:I have obviously said it. I think over time, you know, as I'm getting older, I just I realise how of course I've always said like that my teenage years were absolutely horrible, I would never go back to them. But I am. I'm so grateful for you and standing by me for all those years, because it would have just been easier. Oh, no, too high kind of thing Of course you wouldn't have because you're my mum. It would have just been easier to just wipe your hands clean of me, do you know what I mean?
Di Jones:Yeah, I do. And look, I think being a parent of a teenager for anyone is not easy. It's not. It's fraught with all sorts of pitfalls and not knowings and that, yes, you were really difficult and had probably the worst case of everything that you ever hear about a teenager, but you were navigating a pretty incredibly difficult teenage years. You were making decisions about a funeral, about a brain operation, neurosurgery, about life choices that were far beyond your years, and not only beyond your years, but some decisions that people would never have to make. So, yes, while that did happen, it was really distressing and horrid. You faced an awful lot that some people will never have to face. We're making those decisions as a teenager, where there's all sorts of crap happening. Anyway, I guess all we can say is that we made it through those years. We came out the other side better, and I guess that's what I did learn Through all our work we did. We ended up better this side of it.
Sam Cole:Yeah, absolutely, w e have.
Di Jones:And alive.
Sam Cole:Yeah, which is a double plus.
Di Jones:It doesn't matter about anything else.
Sam Cole:Yeah, I think that's a great place to finish, because that mindset didn't just get us through back then, but it also shaped us how we face the future together, and that's exactly what we'll be unpacking next in part three the supports, my independence and the future is what we'll be discussing with mum. Thank you so much, mum.
Di Jones:Bye, Sammy.
Sam Cole:And that's it for today's ride. Thanks for rolling with me. Make sure you're following A Wheelie Good Chat on Instagram for all the latest updates and, if you're loving the chat, don't forget to follow the podcast on your favourite streaming platform. Stay safe, everyone. I'll catch you next time.
