Episode 10- Siblings

Lisa’s son Remy and Kristine’s daughter Marilena talk with guest host, Heidi Dickson, sister to Ryan, about their personal experiences of growing up as a sibling of a child with a disability.

Speaker 1:          Welcome to Loop Me In, the podcast community for parents and carers on raising children with disabilities. Join presenters, Dr. Lisa Interligi and Kristine Christopoulos and their guests on sharing experiences, information, and support ideas to help children with disabilities flourish.

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Heidi:                  Hi, everyone. I’m Heidi. And I’m excited today to be joining the Loop Me In podcast as today’s guest host, talking about what it’s like to be a sibling, and a sibling when your sibling has a disability. I am also joined by two very special guests, which is Remy and Marilana. They are the son and daughter of Loop Me In hosts, Lisa and Chris. And I understand that Remy and Marilana, your brothers are best friends, is that right?

Remy:                 That’s true. Yes, they are. And they’re hanging out today, so it’s always happening, they’re always together.

Heidi:                  What are they doing, do you know?

Remy:                 Not too sure. Marilana, do you know?

Marilana:           I’m not sure. They’re with another friend. I think they’re going to the park maybe. Yeah, we’ll see.

Heidi:                  So, probably start by getting you both to introduce yourself. Tell us a bit about who you are and a bit about your siblings.

Remy:                 So, I’m Remy. I’m the eldest son of Lisa, and I’m Louis’ older brother. I’m 23 and Louis’ 21. Louis has autism. And I’m still at home living with my family, so I still get to interact and live with Louis every day, and we’re really close. So, I’m really keen to have a chat about him and our relationship today.

Heidi:                  Thanks, Remy. Marilana?

Marilana:           So, I’m also 23, very similar to Remy, and I am Kristine, one of the hosts’ daughter, and I’m a speech pathologist. And Matthew, my brother, is 21, and he has an intellectual disability, and he was actually recently diagnosed with a syndrome called Malan syndrome, about two years ago. And I also live at home still, with the family, and I also have another younger sister, Analise, and she’s 16. So, it’s the five of us at home here, which can be a bit crazy, but it’s fun.

Heidi:                  Thank you. I’ll probably just introduce the context as well. So, my brother, Brian, he is 32. He has a moderate intellectual disability and autism, and we’re at a different stage. So, Ryan now lives in an independent supported living situation with Life Without Barriers. And we’re at a different stage, but I’m sure we’re going to get into some of that conversation today. So, Remy, you touched on your relationship there with Louis. Why don’t we start with what’s your relationship like?

Remy:                 Yeah. So, we’re very close, and that’s probably chiefly by virtue of we get to see each other every day and we have the same routine of chatting every day. So, we wake up and see each other in the morning, especially working from home during the COVID lockdowns, that sort of thing. And we chat often throughout the day, and due to his autism, it’s very much routine based chats, things that he needs to tick off in his head to make his routine throughout the day.

So, it’s not always the most intellectual conversations, but having a chat about what he did that day and what he had for lunch and those sorts of conversations that we have every day. And look, we are quite close in that sense. So, I know that when I’m not home, he’s always asking where I am. So, we are close even though it’s not your typical brother or sibling relationship.

Marilana:           It’s so funny, so much of that, I feel, is very similar to Matthew in the way that he needs that same routine base and he can be quite repetitive. So, it’s really funny hearing that, and I just felt I could relate to almost every point. But with my relationship with Matthew, we are very close as well, and there are sometimes we’re not as close.

And I’m working at a hospital at the moment, so I don’t see him too much during the day. But we both just love music and dancing, and that’s probably the one thing we love doing together. And no one quite enjoys my singing or dancing probably as much as he does, so that’s nice. But he can have a laugh at me, and he thinks it’s hilarious when I…

Matthew is obsessed with movies, so I can quote almost all of his favorite movies now, so he thinks it’s hilarious when I just quote his favorite lines. So, that’s how we communicate by a lot of singing, dancing movies, and also him asking me, “What are you doing? What are you doing on the weekend?” He has these set phrases, and I don’t know how much he really understands sometimes when I say, “Work.”

He sometimes just thinks it’s our family business, that that’s work to him, so he doesn’t quite get it, but we have that very similar conversation every day, which is really nice. But as Remy said, it’s very different to probably a traditional sibling relationship, but it’s really special.

Heidi:                  And I understand, Remy, that Louis loves movies as well?

Marilana:           Yes.

Remy:                 Yeah, very much so, and loves movie trailers. And if there’s a sniff of a movie coming out, we’re straight onto YouTube and I’m on his iPad typing up when’s the new Spiderman trailer coming out. And loves reenacting movie scenes with figurines. So, that’s his favorite pastime, and it makes for some funny comments when you can hear him from his bedroom. And some of the superhero chats, it’s quite hilarious. So, that’s definitely an interest of his too.

Marilana:           Yeah. I think they love going to the movies together. They go to Gold Class every month, a little-

Remy:                 Plenty of laughs.

Marilana:           Yeah.

Heidi:                  I love it. So, I was doing some research in prepping for this. This is my first time hosting a podcast, so I was being very diligent in doing some research. And I was reading that according to research, we as siblings of a sibling with a disability are more caring, kind, sensitive, tolerant, mature, empathetic, and or independent. So, just putting a plug out there for us. Do you relate to any of that? Do you think that having a brother with a disability has influenced you in any way?

Marilana:           I think it definitely has had a big influence. And those are all very lovely words, so it is nice to hear. I think the ones that probably stick out the most to me, I do think I’m quite an empathetic person and that that definitely probably comes from being with Matthew and growing up with him and really just having a very open mind with all people and an understanding about we don’t know what everyone’s going through.

And I think it can be really challenging at times at home, so just an understanding that everyone’s life can be very complicated and you really don’t know what’s going on sometimes. So, empathetic, I feel it has made me a more patient person as well. I don’t know if that was one of the words on that list, but I think they are two things that resonate with me. What about you Remy?

Remy:                 Yeah, I’m very much the same. I don’t really have too much to add. It’s probably a bit difficult for me to talk myself up a bit, but I do feel I’m a patient person, and you work out pretty quickly growing up that you’re not going to get all the attention, and if you want your parents’ attention, you have to wait for it. And I know that probably before Louis was born, I used to make a habit, my mom always tells me that I used to say, “Me first, me first.”

I need everything first, and I think that you learn quite quickly that’s not going to be the case. So, I think you do develop that patience and that understanding that it doesn’t always go your way as well. Then, definitely empathy, and not just towards people with disabilities or that sort of thing. I think you get an appreciation for disadvantage and you can identify with it, but not in yourself but what your sibling’s challenges are going through. So, definitely empathy and patience are definitely two that I feel I have worked on through growing up with Louis.

Heidi:                  Yeah. And I think it definitely impacts and influences both from a personality, but even professionally. I know, for me, I’m very passionate about social inclusion. And even Marilana’s speech pathology pathway that you’ve taken, do you think that was influenced by Matthew?

Marilana:           Yeah, a 100%. And I think, growing up with Matthew and us only being a few years apart, I just remember growing up going to all of his therapist appointments with him and with mom, so speech therapy and physio and OT and psych and all of that. So, it just was a part of my life, in a way, and I was so exposed to all of those health professions and disciplines.

So, I was really passionate about communication in general because that’s one of Matthew’s big impairments is his ability to communicate effectively. So, it was really inspired by him and wanting to learn more about it for myself, even just to know…

I think a part of me wanted to learn more about how I could help Matthew, in a way, but also, how I could help other people in that way. So, definitely inspired me to do speech pathology from Matthew, definitely, yeah.

Heidi:                  And do you find you bring that home sometimes now, now that you’re actually professionally skilled and you’ve got that experience, do you help with Matthew at home in a different way or are you still playing a typical sibling role?

Marilana:           Not as much as I thought I probably would. And I think when I was studying speech pathology I thought I was going to have all these really helpful tips and tricks about how I could be more helpful in the home, but I realize you can’t be a therapist when you’re at home being a sibling. And I did, I think, have to just learn I’m still sibling and I can’t discipline him and have reinforcement strategies and try to…

I think I can help give some ideas and facilitate some things, but at the same time, it’s just not my role. He has his other professionals that can help him with that. So, it’s definitely helpful in a way, but also, it’s more important for me to keep that relationship with him as just a normal sibling relationship.

Heidi:                  So, that probably leads me to a question, again, some survey done by Siblings Australia spoke about the most common impacts or the reactions that we can sometimes play as siblings. So, a lot of the time siblings can act as the parent and can start to take that role. So, I think it’s really nice that you’ve maintained your role as a sibling.

Others tend to act out. They may experience anxiety, or they tend to be the good child. So, for me, I could really resonate with the good child, so wanting to just do the right thing, fly under the radar, not cause any problems at home. But I’m just really keen to hear, did either of you play different roles, either now or as you’ve grown up, that you could relate to?

Remy:                 Yeah, Heidi, I feel the same way. I did want to take the role as maybe the good child growing up and didn’t want to act out as much, and I think I had quite a fear of letting down my parents. And I think you always, whether it was conscious or not at the time, I think they always had their hands full and had better things to worry about in terms of Louis.

And I think that this definitely wasn’t conscious thought, but I always believed that I wanted to fly under the radar and not cause too much of a fuss. And that was even with things as little as having birthday parties or that sort of thins.

And this might be partly my personality anyway, but I don’t really feel as if you ever wanted to cause them much trouble in any sense, whether that was acting out or just making a fuss over yourself. So, I think that it did impact what role I had growing up, and I hope I took the good child route.

Heidi:                  So, no acting out stories then for you, Remy?

Remy:                 Oh, my mom and dad might say differently, but I think I was okay. No.

Heidi:                  All right, we’ll leave that for another episode. We’ll check that out.

Remy:                 We’ll have to, yeah.

Heidi:                  What about you, Marilana?

Marilana:           No, very similar, I think. Just as you were saying that, Remy, with how much you consciously think about those kinds of things, I think it really changes throughout. Even as I was younger, having Matthew as my sibling, you don’t feel it has a direct noticeable impact on yourself, and you just roll with it because that’s normal and that’s what you used to and you don’t… I don’t know, I never felt I really noticed, in primary school, too much.

I knew that Matthew was different, but I didn’t acknowledge or think that there was a very direct impact in my life because he was just my brother, and it was definitely probably underlying, me realize underlying things, like me trying to just do the right thing. But you probably just don’t notice that till you get a bit older and you realize how much those things influence you and reading a bit more into it.

Yeah, that does make sense. I did do that. But transitioning then to high school and starting a new school with new friends, and it’s already a vulnerable time for anyone, and that feeling of acceptance with a new friendship group and then you’ve got Matthew at home. So, that’s when you notice, “Okay, it is a bit trickier now.”

And that difference when you’re younger, the gap seems a lot less, whereas when you’re older and you start going to school and learning and studying and going to parties and Matthew’s not doing those things, you just notice that difference a lot more. And I think it’s just really important, that whole transition with friendship groups and having people over, it comes with new challenges as you get a bit older as a sibling, I found.

Heidi:                  So, how did you find you navigated that situation, Marilana? So, different friends, new friends, and Remy, you touched on this as well in terms of not necessarily having a lot of parties or doing anything crazy and wild at home. How has that played out with social interactions, and how have you both navigated that?

Marilana:           I think for me, sorry, Remy.

Remy:                 No, go for it.

Marilana:           Mom has always been really big on making us go to see a psychologist that Matthew also, I guess it’s our family psychologist, to talk through and navigate those things, which, at the time, I didn’t see the value, I think, and thought, “Why are we doing this? I don’t get it. This is just like, ‘Yeah, I know that Matthew’s different and that’s just life. There’s nothing we can do about it. Let’s just accept it and move on.’”

But I think going to her actually really helped with having those conversations and acknowledging that there are some things that we can’t change, but also navigating how we can make things a bit easier and what conversations to have and maybe putting Matthew the first time with friends over and yet still building that friendship, maybe Matthew can go to the park that day and it can just be about you and meeting the other family members, and then slowly just having Matthew there and maybe talking about it before.

Then, him just being immersed in my friendship group was always really important to me. And all my friends absolutely adore and accept Matthew, and that’s a big… which I’m so grateful for. But they just wouldn’t be in my life if they weren’t like that as well, because Matthew’s a big part of my life.

So, definitely, having some professional help, I think, was really helpful for me to just support those things, and also to just look after myself and my own mental health and acknowledging that there’re other challenges as being a teenager and also having Matthew comes with added complexities. So, I found that really helpful, personally.

Remy:                 Yeah. I’ve probably got a bit of a different story on social interactions with my friends and Louis. I was quite fortunate growing up that this was never really a thought of mine to ever consider or tip-toe around having people over. That never really crossed my mind, and I think that’s purely down to how great my parents were with being able to support me and encourage me.

Both mom and dad were super encouraging to bring people over, and that was never an issue, and they never saw it as an issue, and that never filtered down to me as an issue. So, having said that though, growing up, I probably didn’t have groups of people over. That had a bit to do, probably, just with my grandmother lives with us as well, and it was always hard to have, in the house, have many people in the home or anything like that.

So, that never really was an issue for me either, and that wasn’t because of Louis. Having said that though, I do feel more comfortable perhaps bringing people over and having people interact with Louis as he’s grown older. When he was younger, I think he was a bit more unpredictable, particularly when I was in school. And while I wasn’t scared that he would act out on any of my friends or do anything that would embarrass me, it didn’t really cross my mind, but I just feel as if the home is maybe more accessible to my friends.

I feel more comfortable, just in general, having people over as I’ve grown older and Louis has got older. So, no, it was never really a huge issue for me growing up, and I think that’s a real credit to my parents who were fantastic with my social life.

Heidi:                  And I think it is about who you have as your friendship group, like when you have got really amazing friends, they see your brother or your sibling as the person that they are. They don’t see necessarily see the disability and it’s not an issue. So, being surrounded by really important people is part of your network and part of-

Marilana:           For sure. And I’m also acknowledging that for someone that hasn’t had someone with a disability in their life, it can sometimes be a bit uncomfortable, and you’re just working them out and how they react, and you don’t know. It can be, sometimes, confronting. And Matthew, if it’s a sunny day and he wants to go in the pool, his way to communicate that is knowing, “Okay, when you have bathers, that’s, ‘Yep, we’re going to the pool.’”

So, he might accidentally grab someone’s boob area to be, “Do you have your bikinis on underneath,” to try and work out whether it’s a pool day. And of course, that can be a bit confronting. And Matthew can be a bit unpredictable sometimes. So, acknowledging that, it’s just building that relationship as well with friends, and they’ve got to get used to him as well and understand what they can also say to say, “No Matthew…” That you can just tell him, “No, that’s not okay. We can’t do that.”

But it’s just managing those relationships and friendships. But I think, similarly to Remy, I’m lucky that mom and dad have always been wanting me to have friends over. And I do love hosting and having parties at my home, and then Matthew’s usually here, so they’ve been very helpful to help facilitate that and whatever I’m comfortable with and what he’s comfortable with too, because once he does see a party, he thinks he’s staying. So, working out what’s-

Heidi:                  Of course.

Marilana:           … best for everyone. Yeah, it can be tricky because Matthew loves to party.

Heidi:                  So, what is home life like? Obviously it’s been a long time since I’ve lived at home. I’m a bit older than both of you, but you’re both still obviously at home, but I definitely recall it being, at times, very chaotic, unpredictable, and at times, hilarious and lots of crazy stuff happening, but what’s what’s life like at home?

Remy:                 It’s funny, growing up our home was very chaotic. I would think my family’s just naturally loud. I’ve got an Italian father who can be loud just placing a glass of water down or something like that. It’s just a naturally loud household, and Louis’ quite loud. He loves singing and jumping around. So, I think there’s chaos still there.

But the one thing that Louis implemented in his own way into the house is a real routine. So, I think that we all conform around his routine as well. And what’s happened is, that reduces the chaos. Now, that he’s become probably less unpredictable and more predictable with his actions and his behaviors, and those routines are really set in stone, I would say probably quite the contrary. I don’t think we are a very chaotic household anymore.

We, day-to-day, is pretty stock standard and expected, which is really nice, because I think that it does ease the burden on my parents. However, there are obviously some stresses that aren’t your typical household stresses, and that’s still ongoing. So, in some ways not as chaotic, but it is still can be a stressful environment at home.

Marilana:           Yeah. Sounds like structured chaos.

Remy:                 Structured chaos, that’s it.

Marilana:           And I think, especially with these all these lockdowns in Melbourne, it has been a really hard time with a lot of kids and people with disabilities because they rely so much on that structure and that routine, and that’s completely gone out the window. So, that was quite a challenging time for Matthew, and in part that means all of us, because he lives with us all. And if he’s having a bad day, sometimes it can affect us all because he’ll let us know about it.

So, it can be hard. And when he wants something I guess… And we’ve acknowledged now as we understand him more and more on how he works, and we acknowledge, “Okay, he needs that routine and that’s what helps him manage his own anxiety and how to get through his day.” So, he knows what’s going on.

Because of that communication breakdown he, I guess has… Then, with just lockdown, it’s so hard to explain to anyone why we’re locked down, and it’s such a crazy time. Then, obviously Matthew can’t understand why is… Matthew goes to JB Hi-Fi every Saturday and Sunday morning to go buy a DVD, and that’s just what he loves to do and it’s the routine.

So, for him not having that, it was just, his whole world was thrown, and just, “Why is JB Hi-Fi not open?” We’re, “It’s closed.” And I think he almost thinks we’re lying to him, and that’s what can be tricky in him not being able to understand, “No, we’re not lying to you,” and, “We’re on your side [inaudible 00:26:32].”

So, a bit chaotic during lockdown time, but I think just having things like visual schedules and getting some of those therapists back to helping how can we readjust him back to manage his own anxiety and help him, has been helpful to just redirect. And it’s just about knowing, with people like Matthew and Louis who rely so much on routine, you just need to facilitate what they need to make the household a more easier place for everyone.

So, it is a lot of adjusting sometimes to what Matthew needs, because sometimes there is no option, and then you’re, “Okay, we’re gonna have to do what Matthew wants for the sake of everyone,” which can be annoying, but that’s how it works sometimes and just learning and trying out. It’s a lot of trial and error sometimes working out what’s going to work, especially when studying.

I remember for uni or exams at school, if Matthew was having a bad day, it was hard to manage how are we going to work him out so I could finish that exam in peace, upstairs in my room during uni times. So, definitely can be chaotic, and noticing that’s just life, and then working out also how we can minimize it as much as possible, but also just accepting that it’s at times.

Heidi:                  Yeah, I must say the routine’s similar for Ryan. With Ryan’s autism structure and routine, it’s so important, and he’s been going to [inaudible 00:28:14] programs for as long as he feels he can remember. So, being in lockdown and not being able to see his friends and not understanding why he can’t leave or why he can’t do his normal structured routine has been hugely challenging. But Skyping with him this morning, he tells me that lockdown is over and he’s he’s back at day program. So, fingers crossed, this is the end because it has absolutely been very challenging.

Marilana:           It’s challenging for all of us and especially them. I can’t imagine. Yeah, it would’ve been very hard not being able to see their friends. It’s really tricky.

Remy:                 I think it’s quite interesting the differences perhaps in their behaviors because Louis, I feel, has adjusted quite well. And I think that he, generally speaking, is quite easy-going, laid-back. That’s his personality. And while he sticks really strong to his routines. And he can get upset about his routines being uprooted in this way. If he has warning and he gets his head around it after some days, he really is…

What I’ve been really impressed with, especially recently, is his flexibility. And he really enjoys being on iPads at home and not going out as much, and he can adjust. And I’ve been really impressed by that. And I think that also, it demonstrates how you can get different behaviors, even if there is that routine, there are different personalities that can shine through in that way.

Marilana:           Yeah. And every kid with [inaudible 00:29:49] MSA experiences from three different perspectives, but it also acknowledging that every kid with a disability and or every person, I always say kid, because we used to work with lots of kids with disabilities, but every person with a disability is so different. And that expression, “If you meet one person with autism, then you’ve met one person with autism,” I always think about that saying, because it really is so different.

And whilst there are a lot of similarities with routine and structure and a lot of things are quite similar, they are still completely different people. So, also acknowledging that everyone’s experience is really different

Heidi:                  And we can’t underestimate their capacity to learn and change and be incredibly resilient. I wanted to talk about parents. So, I am obviously now a mom of two children, and I think, having been a mom and reflecting on, now, what it must have been like for my mom and or parents growing up with a child with a disability, as you both now are adults and probably planning your futures, have you thought, have you reflected on your relationship with your parents or have you reflected on what their role has been or how challenging it may have been for them?

Remy:                 Yeah, certainly. I feel, probably not reflecting on my relationship with them as much as how I’ve grown to certainly have appreciation for everything they’ve done for the family and specifically the hardships they went through with Louis, particularly when he was quite young, and the different roles that they take.

My dad’s an unbelievable support system for Louis, daily support system, and was very much so when my mom worked in Sydney for quite a few years and would be gone all week, and just the slack that my dad was able to pick up during that period was remarkable.

Then, my mom, particularly when I was growing up, she was doing her doctorate, and to be able to really support Louis and doing those things growing up, I never appreciated that when I was younger because you’re always thinking about yourself and your own life. It’s just natural teenage… And it’s just that, that’s what it is growing up. But certainly now, when I can look back on it and see how far Louis’ come, I definitely feel a newfound appreciation for them in the last couple of years, for sure.

Marilana:           Yeah, for sure. Yeah, quite similarly. And I think during lockdown it’s been a lot of time of reflection and looking back on, it’s something I’ve been doing, just looking back on past photos and memories and just really reflecting on everything and seeing everything we have done with Matthew and how we’ve had such a great upbringing all together.

And mom and dad have done an amazing job and like trying to keep our lives as well as normal as possible so as to not limit anything for us or limit any opportunities, and making sure that we’re still going on those traditional family holidays.

And whilst they’ve looked a bit different and definitely have been challenging sometimes with Matthew, Matthew having a tantrum at Dubai Airport or something, but they’ve really made an effort for us to still do everything and for us to still have that really good family connection. And whilst things look different at times, it’s still, they’ve been amazing.

It’s just, I don’t know, I probably didn’t realize how much extra work it has probably taken them, and just acknowledged it. Yeah, they’ve been amazing. And it’s really nice them doing something like this as well. And they’ve got so much knowledge, and they’re both quite amazing, our moms, I think, Remy?

Remy:                 Yeah, absolutely. And I should also mention, I do want to say that I also have an appreciation that it’s a whole family effort. And some people aren’t afforded those opportunities to have a support system of a family, but I know my family was quite lucky with my grandmother who came to live with us about 10 years ago and was a really strong support for my parents and allowed my mom to continue working and my dad to continue working full-time as well.

And I think that we have extended family, aunties and cousins that are really strong social support for Louis as well, and to support the rest of the family as well, to encourage them to continue their endeavors despite having the challenges of growing up with caring for someone with special needs. So, I do appreciate that it’s also a whole family effort, and I certainly appreciate that in the last few years as well.

Marilana:           Yeah, for sure.

Remy:                 Isn’t that the village that your mom speaks of, “It takes a village to support…”?

Marilana:           Yeah, it does. I know that when mom and dad just get a bit sick of Matthew’s repetition, we will just ring the grandparents and have them, he’s on loud speaker, just having those conversations, and we go down the list of family members so he can… Yeah, it really is.

There’s such a massive support system, and just acknowledging there are a lot of social groups and other people, and even talking to you two as well, it’s really nice to talk to people in similar experiences, but also, people are also kind and empathetic and understanding and, yeah…

Heidi:                  Yeah. I must say, Remy, your mom, Lisa, who I worked with for many years, she was a huge support for me, I think, with my brother in just having someone else to bounce things off or just somebody that understands what some of those crazy and funny stories and circumstances are and being able to share them with her.

So, one thing that has happened for me is, obviously, I’m now a carer and guardian and formal advocate for my brother in a different capacity not have having our parents around. And as siblings, we are going to hold the longest relationship with our brothers than anyone else. Have you both thought about what the future might look like?

Remy:                 I think about it a lot, and it is a bit of a source of anxiety, I think, this uncertainty as to your future. And I’ve gone through life without having, really at all, any true carer responsibilities for Louis. And I think that not having my parents around is certainly a sense of… it’s a source of anxiety for me and what’s it’s going to look like, but it also is a motivator.

I think that it’s really important that you need to… It says to me that, in the next sort of 10 years, the responsibility might fall on me as my parents get older, that I need to live my life and travel and earn money and be able to support him when I need to. So, I definitely think about it a lot, and I think it’s a real motivator for what you need to do over the next 10 years also, until that responsibility does truly fall on you.

Marilana:           Yeah, it is something that does make me a bit anxious thinking about, and knowing I know how much mom and dad also sacrificed in their day-to-day life to try and to look after Matthew, because he is quite dependent with all of his activities of daily living and knowing that responsibility. And I want it to be as well because I know no one will look after Matthew as much as a family member and know him as well as we do.

So, it does make me feel a bit anxious, and I think it is really good to not to pretend it’s never going to happen because it is the inevitable. So, having open conversations with mom and dad now about that and almost future planning, as much as it’s not a fun topic of conversation, I think it would be a lot scarier having it almost when it’s a bit closer.

So, I don’t know, we don’t really speak about it that often, but I think just having a bit of a plan would be good to know what will happen, what will it look like in terms of the traveling and having my own independence and my own family and where Matthew would fit into that as well.

Heidi:                  There is a tremendous amount of support out there though when you do get to that point. I don’t think growing up as a sibling there’s a huge amount of support. We hear a lot of support for parents, you hear a lot of support for the child that has a disability. There’s not necessarily a lot as the sibling, but certainly having now stepped into that carer and guardian role in this capacity, which is a weird space to be now, there is so much support.

He has an amazing team around Ryan with Life Without Barriers, which is adamant about his independent living. And he has amazing coordinator of support, and we have psychologists and behavioral therapists, and he has speech therapists, and it is literally a village of carers and support that I’m really thankful for that surround me to help me navigate this.

But it’s also great to have other people that are in carers or other parents that now the [inaudible 00:40:15] community’s trying to connect to that you can maybe get advice from. And of course, I’m always here for you both when that time comes in the future, but there’s a lot. So, please don’t feel anxious about it. It will happen when it happens, but there’s a lot of support for you.

Marilana:           Yeah. No, thank you. And that’s really good to hear, and I know that those supports and places are out there. And I’m sure Matthew would want to be living with his friends, with, probably Louis and… So, working out what’s best for him. Yeah.

Remy:                 Yeah. I think Louis might give me the flick soon. He might [crosstalk 00:40:54], “I better go with Matthew.” So, maybe it’s more of a challenge of him wanting to be around me that I need to deal with.

Heidi:                  Yeah. I think Ryan definitely got to an age where he was just so driven about his independence. It was all about being independent. And he’s done the transition, amazing, to doing things that I never imagined he could do. And I underestimated his capacity, but he was able to…

He lives in a villa on his own. Of course, he’s in a supportive facility and he has 24-hour care, but he cooks and he goes and does his shopping and he does his cleaning and he washes his clothes, and he has to do everything that everyone else has to do, and he loves it, he loves it, and he’s completely supported to do it. So, you don’t know, Remy, he may ditch you for Matthew. It may be the case.

Remy:                 Yeah. Look, hopefully not for a few more years.

Heidi:                  So, I’ll probably just close. We’ve spoken about a lot and gone in a lot of different directions, but what is it that you love most about your brothers, and what would you want to close on?

Remy:                 For me, I have really appreciated, in the last few years especially, seeing Louis’ personality, and we truly do get along really well. When he was younger, he was just a very anxious person and he was just working out, I think he was just navigating his own growing up. And now that I can start to see that he’s got a really strong personality, I love interacting with him.

He loves slapstick humor, he’s loves music. I know I can make him laugh, and I love roughing him up like an older brother would and being physical with him, and he loves that. And I really enjoy those interactions where I can truly see his personality and make him laugh because I think that he certainly made us laugh over the years, and I really appreciate now that I can get laughs out of him and I know we can joke together in that sense. So, that’s something that I really appreciate with Louis at the moment, and it’s really rewarding for me to have him.

Marilana:           Yeah, that’s really nice. I think what I love most about Matthew is, he’s a very happy person most of the time and he has a lot of love to give. And he is very social and he just loves the little things in life, which is very grounding as well. And can just take that one song or me singing a silly song to him and he just gets so excited and happy, and it’s just really nice to see.

And I know that as soon as I talk to him or make that joke, he’ll find it hilarious. So, that’s something really special that I love doing with him. And having that shared interest in music and dancing, it’s really lovely, and…

Heidi:                  It sounds like he’s your biggest fan.

Marilana:           Yeah.

Heidi:                  And Ryan absolutely loves music as well, and he can recall any band any year it was made. So, he’s a huge music fan, and I think shares a similar very dry sense of humor. And it is quite funny we share quite a dry sense of humor. And he does certainly make me laugh. But look, I think it’s been an amazing conversation, and I thank you both very much. And I’ve had the pleasure of hosting it, and hopefully it’s informative and interesting for other siblings to listen to and or parents.

Remy:                 Thank you very much for having us, and I really appreciated the chat.

Marilana:           Yeah. Thank you.

Speaker 1:          Thanks for being part of the Loop Me In community today and joining our conversation on raising children with disabilities. Join us for the next episode on some of your favorite platforms like Spotify and Apple Podcast. If you would like to support us, please recommend the Loop Me In Podcast to your network of parents, carers, and providers.

If you would like us to cover a topic or invite a guest to chat, please email us at contacta@tloop-me.in.com.au, or go to our website at loop-me-in.com.au. If you’ve got any feedback, please let us know so we can improve and cover issues you want. And of course, if anything in the podcast today has raised concerns for you, you can contact Beyond Blue on 1300 22 4636 or Lifeline on 13 11 14.


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