Episode 5 – Skills for Life
Hosts Dr Lisa Interligi and Kristine Christopoulos welcome guest Nicola Millar, Occupational Therapist, to talk about helping young people with disabilities develop skills for life.
Hosts Dr Lisa Interligi and Kristine Christopoulos chat with Hampton Surf Lifesaving members Kerry and Zoe about the all abilities surf lifesaving program – Starfish – the importance of celebrating small steps, building confidence and having fun.
Speaker 1: Welcome to Loop Me In, the podcast community for parents and carers on raising children with disabilities. Joined presenters Dr. Lisa Interligi and Kristine Christopoulos and their guests in sharing experiences, information and support ideas to help children with disabilities flourish. Loop Me In is brought to you weekly on platforms like Apple Podcasts, Spotify and Stitcher to name a few. You can learn more, connect to the Loop Me In community and listen to more episodes on our website, loop-me-in.com.au.
Speaker 2: Welcome everyone to our next podcast. Today we’re here with Carrie and Zoe from Starfish Nippers, great community lifesaving club in Hampton. Hi, ladies.
Speaker 5: Hello.
Speaker 2: We’re so excited to have you on because our boys both come down to the Hampton nipples every Saturday and absolutely love it. Very tired when they get home but absolutely love it. And you guys provide a modified version of life saving for children with a disability. I think it’s been running since 2012, is that right?
Carrie: 2013, so we’re coming-
Speaker 2: [inaudible 00:01:20]. Yeah. So tell us both how you got involved.
Carrie: Originally, we saw an absolutely amazing and inspiring lady called Janet Jones. I went to the life saving conference at Life Saving Victoria, which is what we do every year. I was the director of development at that stage. And I was there with the president who is an amazing inspiring fellow, Paul James. And I heard James speak and I went, “We need to do that.” So it was six weeks before the start of the season, I went, “[inaudible 00:01:52], we’re going to get it up and happening.” And in six weeks, we had 10 kids, where I was going to start with five. We started with 10. Found 10 volunteers in the club and because we support the young people one on one to do this lifesaving program. So it’s exactly the same as the regular nippers, same program, it’s just delivered more flexibly, that’s all. And then only a couple of years after that, I met Zoe and her husband, Paul. And they were saying, “We’re thinking that’s great.” Join terrific. You [inaudible 00:02:24] your bronze medallion as well? Excellent, that’s fabulous. Come on down. And we’ve been knocking at the ballpark of the suits and having an absolute blitz of a ball with heaps of laughter every week for the last nine years.
Zoe: I was going to say just I guess a part of that journey as well was that I found or came across Carrie and Starfish Nippers because we had a child that was nonverbal. And one of the first things that he showed that he wanted to do socially was nippers. But at the place that we were at, it was pretty clear that that was not going to really work particularly well. And my mother in law, who’s been living in Brighton forever was like, “Why don’t you come down to Hampton, they’ve got this program.” And I was like, “Yeah, sure, sure.” And sent Carrie an email saying, “By the way, I’ve got… My son would really love to do nippers but he’s underage. And he’s…”
Carrie: [inaudible 00:03:15].
Zoe: He doesn’t talk and he’s got epilepsy and he’s never been to the beach and he doesn’t particularly like water but he’d really like to do Starfish. And we live an hour away, so not sure whether that works, because we’re out of the zone and Carrie is like, “Sure, sure we can make that work.” That was the start of a huge journey.
Speaker 2: And definitely a great journey you’ve had. Because how many people are involved in nippers now?
Carrie: 43 and we’ve got several on the waiting list. As having said that, though, it’s not a group of 43 kids and young adults, though, we’ve actually… Yes we got bigger and we got smaller, if that makes sense. So when we got [inaudible 00:03:53], it’s getting a bit busy and we’re losing sight [inaudible 00:03:57]. We actually broke down into groups of 10. So we’ve got groups of 10s looking for groups of 10. It’s led each by a group leader and they have individualized programs. And we’re really excited a couple of years ago, one of our older young men who now is into his 20s, as well came out and said, “Carrie, I’m not a child anymore and I want to do things differently because I’m a bit older.” And I’m like, “Nelson, you’re damn right. We need to actually… You’re an adult now, so we need to do things differently.”
So we created a group that does big kid stuff. So they do big board paddles, they go and do tube rescues, they go and do signals. They’re all doing age type things and we just address it in at a flexible delivery. So we’ve now got that group, so he’s going to need a group next year which is first round of our surface [inaudible 00:04:52]. She can relate the whole season for that, so we’ve got a group heading there and then we’ve got three other groups and potentially another group next year of 10. So there’s 10 adults and 10 participants nippers, call them [inaudible 00:05:04] in each of those groups.
Speaker 5: So how did you know that your son wanted to do nippers if he’d never been to the beach, he didn’t like water and he was nonverbal, what was the-
Zoe: So we were-
Carrie: I didn’t have showers either at that stage [inaudible 00:05:16] water.
Zoe: We were always very determined that my other son was still able to do some of the things that he wanted to do. And it was a real challenge at the time because we had one child that was really into sports and wanted to do a huge amount of things. And another child that very much didn’t want to do any of that stuff and didn’t want to leave the house. So Zack got forced along to nippers with Joshua and Joshua loved it. And Zack over the period of a season at first, he was not interested and I’d had to carry him all the time. But then he started-
Carrie: Joshua didn’t like sand-
Zoe: Yeah he didn’t like sand, he used to come… The first time we went down to Starfish, he had socks up to his knees, [inaudible 00:05:58] hands up to his elbows, his headphones on, [inaudible 00:06:02], a pair of goggles because he didn’t like the sun. So it was quite… We actually got photographed by some Chinese tourist. So it was kind of hilarious situation. But when we were down there with Josh, as the season went on, he started pointing at things and crawling into different groups and just starting to actually pay some attention to what was going on rather than just solely clinging on to me. And that was the first time that he had been interested in doing anything other than just sitting on me and being hung off me. But the place that we were at really, they didn’t really understand how to manage that.
Speaker 5: And [inaudible 00:06:43] been now?
Carrie: Can I describe him now? We’ve got a young teenager who’s in the teenage group, [inaudible 00:06:52] at all, swimming, paddling, blitzing yet running down the beach and his [inaudible 00:06:59], his personal best is just extraordinary.
Zoe: And it’s his favorite thing to do. So sometimes I’ve had a really big week and I’m like, “We’ve got Starfish this weekend.” And Zack is like, “We’ve got to get going, what time is Starfish? When is it on? Where are we going? How are we going? [inaudible 00:07:14]. Mom, it’s rained this week, do you think it’ll be on this week, because it might be bad water quality? Mommy, can’t rain on a Friday because we’ve got to be able to do Starfish.” And it’s literally his favorite thing to do.
Speaker 2: And that’s what we see, like I know Matthew and Louie are the same, they wait for tomorrow and they get ready and they’ll probably in bed by six o’clock the next night-
Carrie: [inaudible 00:07:37] can we say [inaudible 00:07:39] we were exhausted.
Zoe: Both my boys fall asleep within about five minutes of being in the car-
Speaker 2: Yeah,
Carrie: Anyway but we have to drive. Now because it’s a huge amount of energy but it’s just because you’re absolutely laughing and engaging and doing the whole time. And it is just so much fun because any child, all abilities, or typical, needs a fun, safe environment in order to learn and to grow, so that’s what we do. And we’d sort of, don’t we. And I think that’s what’s particularly different with the Hampton program is that we leave aside all the disabilities, the labels and the everything else and we work with the kids with where they’re at and support them with where they’re at. Or what they actually want to do as well. So we actually focus on what they can do rather than what they can’t do. And we ran with it and we get them to run with it as well. And we get them to reach for the stars, just like everybody else in the community.
Zoe: I think their real success in that too is that through doing that, it’s really created a genuine community that’s multifunctional and multifaceted and at a number of different levels. So it’s created a community of the Starfish, that now over the years range from five years old up to 21 years old. And then there’s the mentors that are a part of that. And the mentors are learning so much and engaging and building their skills and feel like they’re giving something to the community but they’re also getting something from the community. And often a lot of our mentors are learning things that they need for the rest of their life or for their careers or for their work environment or to build their personal confidence-
Carrie: [inaudible 00:09:17] professional skills.
Zoe: … build their professional skills. And then on top of that, you’ve got your parents and I think speaking from as a parent rather than as a mentor, is definitely provided us with one of the first community spaces that we had. That we could just come down and not really worry about Zack too much. He could just be himself [inaudible 00:09:39] we didn’t have to be embarrassed, we have to be worried.
Carrie: None of that.
Zoe: You could just be yourself. Even when he had a seizure and he was quite unwell, nobody made a fuss. Everyone looked after him and did what needed to be done but there was just a lot of understanding and we could actually sit back and relax and that was one of the first times that that had really happened. And then one of the other things that I really noticed now on the flip side of being a mentor, is seeing the parents been able to chat with each other and share with each other. And I know-
Carrie: Sleep, sit down.
Zoe: Well, so look at my sister. My sister’s just joined with her son who’s five now. And what they’ve been able to find is a place where they can share stories that people don’t go, “Oh my God.’ Or, “You’re such a bad parent.”
Carrie: Really, he did that?
Zoe: Really? Or you’re so over the top or any of those judgmental things. She can actually just genuinely share, relax and be. And she’s gained a lot of information that she wouldn’t have been able to get from anywhere else from other parents. She’s been able to start her NDIS journey supported by other parents that have said, “No, no, actually, it is okay for your son to get NDIS, you should do that. And look, well, we have carers in our house, this is how it works. No, no, actually, it’s awesome, don’t put it off, go on start getting some carers into the house. Start doing some of that stuff.” And having that personal experience, rather than the clinical experience, I think it’s been something that’s just been invaluable for her as a parent as well or a new parent on the journey.
Carrie: That was in 25 words on this [inaudible 00:11:21].
Speaker 5: I think that that’s right. That’s why Kris and I do this podcast is that we have the same experience of sharing information with your moms or your parents is the best source of information and not judgmental.
Carrie: [inaudible 00:11:34].
Speaker 5: Yeah, when you’ve had shitty day and you want to talk to somebody and share it, they’re not going to judge you or you can just share and feel comfortable.
Carrie: By that, you hit the nail on the head, there is no judgment, there’s no critical comments, there’s… It’s judgment. And I think that’s something that Zoe said at the start, there’s no judgment at all,
Zoe: I think a really good example of that, with my sister and her son, Malik, they were sitting on the beach. And one of the other Starfish that I was actually mentoring last week, came up to Malik and was so excited because my sister has also got a little baby. She was so excited and obsessed by the baby and came over and it’s all hands and all facing and she doesn’t talk and her mom was like, “Oh my God, it’s okay. Sorry. I’m sorry. Sorry, sorry, sorry.” And my sister was like, “It’s okay. We do this all time, no problem.” And sat the girl down and let her hold the baby and have that experience. And it’s that sort of that community that’s just really hard to find that’s so accepting and understanding and-
Carrie: Yeah, sorrys are not allowed. There’s no sorrys, there’s nothing to be sorry. And that was something that actually quite interestingly, that I had to take Zoe at the start, stop saying sorry [inaudible 00:12:46]. He’s just gorgeous. And this is the whole point is we see the positives in our kids, beautiful smile engagement, “Oh my God, he did one more thing this time. Actually, he put his face on [inaudible 00:12:59].” Or he didn’t ever [inaudible 00:13:00] when we pushed, when we squirted water in his face this time or we pushed him down the slide or it’s whatever it is, we celebrate everything. Which is quite interesting and I remember… And it’s quite notable, because when we’ve been running for nine years and we’ve just finished MRP or finishing MRP, that at one stage or two kids are doing really, really well and I spoke to both parents and said, “Hey, would you like to have the opportunity to actually go into the business or send them in tours with them? And so they’ll be fine.”
And they said, “Actually, no.” Both of them said, “Actually, no, can we stay in Starfish?” And I went, “Absolutely, no worries. Can you explain to me why.” And they said, for the first time in their life, they are seen as role models and they are seen as somebody to look up to and to copy [inaudible 00:13:46], no worries, this day, that’s great. And one of them still with us nine years later and he’s actually this year, [inaudible 00:13:57] certificate. So he’s out and now he’s patrolling when Zoe and I patrol because we both patrol and it’s just beautiful.
Zoe: Last week, he… One of the Starfish was sitting on the mat and looking a little bit lost. And I was looking after my Starfish and trying to talk to these other Starfish. And Charlie came up to me and goes, “It’s okay, I’ve got it. Yeah, I’ll see.” [inaudible 00:14:20]. Then he goes, “That’s what I do now, because I’ve got my SRC.” And he just had so much pride and pleasure in being able to do that. But he’d started however many years ago.
Zoe: Nine years ago, so he started nine years ago as a Starfish and it’s gone through that journey. And I think that for other people, like for him personally and for his parents personally is amazing. But also for other families to be able to see when, like my sister’s family, they’ve got a five year old that they’re having, new diagnosis, everything’s different, a lot is going on and you’re thinking, “Oh my God, where is this going to go?” But then she can look at Charlie and say, “Well, actually, this is pretty awesome. There are some good things out of this. And there really is a wonderful future ahead.” And that’s something that often in those young years, you just don’t get to experience or so you’re just seeing the negatives and the challenges-
Carrie: And Charlie comes up to me now and says, “So, what am I doing today?” Well, I went, “Well, your water safe today, you’re not Starfish.” You water safe today but on the inside, he’s given the uniform and it’s that great pride of his water safety [inaudible 00:15:28] on his best in the setup and he’s part of the team. And that’s just [inaudible 00:15:32] seem visibly swell with how exciting and how proud he is. And it’s just… And his mom has said, it’s just been… So this actually… The impact on the rest of their life as well with the confidence and everything really, it really does impact their whole life by an hour in the afternoon on the Saturday.
Speaker 2: It’s that sense of belonging and I think it’s also feeling like they’re one of a group and they’re not judged by-
Carrie: They’re a team. They’re in a team, because there’s not many kids who have been in a sporting team-
Speaker 2: That right.
Carrie: … before. They get awards and they haven’t had awards. And remember the parents used to [inaudible 00:16:07]. Yeah, this one is you can make sound the best, excellent, that’s the best [inaudible 00:16:15], best especially investigating, the best in the water, best at swimming, best of boarding, whatever it was that they did was celebrated. And it was the first one that actually had an award.
Zoe: But it’s also stuff that might have been the best at [inaudible 00:16:31]. But that particular Starfish, that was something that gave everybody genuine pleasure and joy, because it was just such a typical thing of that Starfish and took up a lot of time and interest. And there was so much exploration of the sand. And so it’s genuinely meaningful like a meaningful reward that identifies and looks at one of the strengths and one of the highlights of their kid.
Speaker 2: And I think the other thing that I guess in our kids lives is exercise. And they’re not really getting a lot of that, especially as they get older, there’s so much they can do. They’re not going to just go to a gym and work up a sweat. So it’s a great exercise and you’re in the outdoors, it’s just awesome for-
Carrie: That’s where we’re a bit sneaky. So you just turn everything into fun in a game and I ran. So duck, duck, goose is running, you get a 1.5 meter beach ball and you have sprint’s because you got a beach ball but you run because you got beach ball. And you get max, you get trampolines, you get slides, two made a slide, put it out there, they have to swim in order to get out there. [inaudible 00:17:47], then they have to get up the slide and they go down and they’re swimming around. So it’s all these sneaky ways that they’re having fun, they’re actually going to exercise and that’s really, really important. But having said that as well, we also do strictures and different things like that as well. So it’s very active program, outdoors, integrating with a lot of other kids, socializing with a massive group of kids. Even the kids that are nonverbal and they get really overwhelmed with people, they’re still there on the sidelines in a quiet area but they still got that engagement and that contact with other exercise, it could be fun. And so they wanted to do it again, so it’s like, “Great, you do it again.”
Zoe: I think one of the really awesome things with that, as well, is that there’s a lot of kids that have come across… That have gone through the mainstream nippers program and then have gone to teenage years and possibly slightly, not you neurotypical kid but have done the mainstream program and are in a mainstream school setting. But they’ve got to that teenage years and then just become a little bit lost-
Carrie: [inaudible 00:18:48] somebody’s just gone up that notch.
Zoe: … too anxious, or whatever their challenge may be. And they’ve come across to join starfish and as a mentor and their confidence has just gone through the roof. But also, that engagement from those kids that they give to the program is something Carrie and I can’t give to the program because they’re really cool and our kids. And I can’t remember which Starfish it was but one of the Starfish [inaudible 00:19:18] required to delicate around and careful around and then one of these other kids, they just don’t see any of these things. They don’t have [inaudible 00:19:26]. And so they were just doing what they would do with a normal mate, “I picked up bucket of water and tipped it over his head and tipped him off the board.” We would never have thought to take them off the board. And this kid came and just tipped him off the board in a really funny manner. And it was priceless [inaudible 00:19:45] water smiling from ear to ear, giggling and laughing and-
Carrie: That was [inaudible 00:19:53], they just want to have fun. You said you’re a boy with all these labels and all these diagnosis, do you know what? So a seven year old boy wants to have fun. So for goodness sake, [inaudible 00:20:07], for goodness sake and the penny dropped and we [inaudible 00:20:09]. And that was kids teaching us. And that’s the whole point is, they teach us all the time.
Speaker 5: Well, they’re less likely to wrap. We were talking before about parents wrapping their kids in cotton wool and we just recently had Braden Jason on interviewing his brother Nathan. And they’re both blind and they’re both elite athletes and Brandon’s a Paralympian swimmer. And they talked about their parents really challenging them. And they have two other brothers who don’t have sight issues and that they just let them go out without… Being blind into the surf because they love surfing. And I said, “How did you know [inaudible 00:20:47]?” And they said, “Well, we just get smacked in the face.” [inaudible 00:20:50]. Maybe it’s a bit too much for me today and I’ll go back in. But he said that the parents just let them experience it. And he said thank goodness that they did because it’s really helped them.
Carrie: That’s the part of this program as well. We’ve got 40 kids and there’s a lot of interaction between the groups and whatnot, as well. And you do get that normal peer interaction as well. So one of the games the last couple of weeks is I gave them big water pistols and kids that might have a bit of sensory issues with water, they got shot in the face as well and everything is well. Or they were hitting me in the back of the head and it bounced off mine, went into them and whatnot. And that was just… And it was like [inaudible 00:21:35]. And it was okay. It was fabulous as well. So do you know what? They’re not being wrapped in cotton wool. And that was one of the feedbacks that one of the parents who [inaudible 00:21:44] said. She said the thing that was really lovely to hear from a parent’s side of view is that you expect them to reach for the stars as well. You don’t say, “Well, you’ve got all those labels, we’ll get you this far.” It’s like, “Actually, no. We’re actually going to get you to reach this far because why not? If I put the bar here for you to reach here, you’re just going to go up there. We’re going to actually do it here so you actually have to reach and whatnot.” So that’s really important as well.
Speaker 2: And how do you tell me about the buddies that you have and how they get trained and a bit about them?
Carrie: A lot of clubs call them trainers but we like to use the word mentor because mentor, I think, is that you’re actually standing beside somebody and being a role model rather than trainers. We didn’t think they were trainer’s dogs. It wasn’t a positive thing. So we call them mentors. And I’ve got 45 of the most beautiful human beings in southern hemisphere as mentors. And they’ve… We haven’t advertised but we’ve searched really actively sometimes. So they’re just the most amazing. The only real prerequisite is you have to have a really wacky sense of humor. And that’s the only one. I’ve got mentors that don’t swim, I’ve got mentors that have bronze medallions and most of them actually have bronze medallions now. And actually, a lot of the parents now are getting bronze medallions, which is [inaudible 00:22:59] passes to everywhere. So basically, they either hear about us or I’ve got whole families, I’ve got boyfriends who’ve brought girlfriends and girlfriends who’ve brought boyfriends and I’ve got parents that have brought kids. I’ve got patrollers and everyone and whatnot as well.
And then so all they have to do is say, “I’m interested.” And I go, “Yes. Thank you. Fabulous, come here.” There’s a training. So they will go through an induction every season and that changes from season to season. We’ve got the basics of what the lifesaving club is and all that sort of things as well, then we go through all the different diagnosis so we’re aware of the big picture. And then once again, they get a handover and they get information, which the parents have provided. The parents remember are the people that know the best information about the children and know the most. We actually get a handover from the parents. So the parents are filling a fairly comprehensive form that just tells us everything. So that we need to go, “Yeah, got it. By the way, right now we’re going to have… We’re actually going to shoot for the stars.” So then also the mentors get that handover about the individual Starfish as well. And my single most important job every year is to make sure that we get as closely as we can a match to the mentor to the child or the young adult.
And I meet all the kids. It used to be face to face but the last couple of years have been in Zoom meetings. But I get a feel of the expectations of the parents and of the Starfish as well and I know our team really well. So try to match that with [inaudible 00:24:32]. I’ve got mentors that are ocean marathon swimmers. So if I’m going to stick them in the same program and it’s business that would bore the daylights out of them as well. And we’ve got people that are really gentle and sweet in their nature that I can put with kids that are really fearful and anxious and things like that. Or we’ve got kids that run like Dickens and I have the appropriate people. So that’s my most important job every year, to make sure that I know both sets so that we can match them up. And so we don’t always get the right by well means but once again, it’s a bit of [inaudible 00:25:08] at the start of the season. But there will… I hope to… Well, you tell me. As a mentor, do you feel educated and supported enough?
Zoe: Yeah, I think we spend a lot of time on educating for mentors. And I think that happens in a variety of different ways as the season goes on. So at the beginning, Carrie and I run an information session where we go through the different disabilities and different things. One of the largest things that we need to cover is how to manage seizures in the water. Though we have some active education around, how do you do that? And just providing some of that confidence and support to the mentors. And then after that, we provide another opportunity to catch up but to catch up in a very safe environment that is a place where you can ask any question. Because in today’s society, it can be very difficult. There’s a lot of politically incorrect… People are worried about being politically incorrect, people are worried about saying the wrong thing, people are worried about-
Carrie: Doing the wrong thing.
Zoe: … doing the wrong thing or just not knowing. Or when this happens, what can I do? Can I hold their hand? [inaudible 00:26:12] 16 they want to hold my hand, is that okay? So we provide a really [inaudible 00:26:17]. Yeah. And providing that really safe space to be able to ask any question, have any discussion with no judgment. Just genuine education and understanding. And we try and catch up with the mentors a couple of times over the season just to debrief, share experiences, ask questions and grow in the learning from there.
Carrie: Because we’ve got number of them. We’ve got a number of corporate people who are mentors. And as you know, in all this litigation area and stuff, can we hold their hands? Can we give them high five? Can we give them a cuddle? I said we won’t have a choice because there’d be one where we may. So that’s not uncommon. They’ll just come and grab your hand. And then they said, “Well, what do you do if they tried to get up onto the whatever.” And I said, “Well, you boost them up or you… Up you go, you’ve got no choice. You’ve got 50 people around you who actually [inaudible 00:27:05] between [inaudible 00:27:06] as well, 80 people around you.” And these kids are… They don’t know that you’re not allowed to touch. And yes, even hold their hand, give them a cuddle, give them a high five. And what are you going to [inaudible 00:27:17]. “I know, you’re crying and you’re upset, you really need to cuddle but I’m not allowed to. Because mom and dad are over there.” And whatnot and that sort of stuff as well. So it can be tricky. You just got to bring common sense and we’re dealing with little human beings here.
Zoe: And also, I think that understanding you have that we can sometimes be a younger personality socially, a more mature body, often there can be a discourse in that. And being able to acknowledge that discourse and look at that discourse is a really important understanding. And understanding that at the end of the day, so long as everything that’s done is done with care and the right idea and the right respect, that what we’re working towards is a safe environment where everyone can just be their best and get the support that they need to be able to enjoy and participate.
Carrie: And it was interesting having two 21 year olds and someone say, “Actually they need to have help changing. Do we have a space that has… That you’re allowed to take two 20 year olds in with a female to help them get changed?” “Oh my God. In a normal environment, no we don’t.” So it’s like, “Hey guys, we’ve got a challenge. How’re we going to deal with this? Because this is happening and this has to happen. There’s… You don’t… You can’t drag two 20 year old young men into a ladies change room and those sorts of things. So hey guys, how are we going to deal with this for the respect of the boys and of people coming with them and everything else like that?” “Oh my God.” “Yeah. We better think about and figure it out.”
Zoe: And I know that’s actually on some of the forums that I’m involved in. It’s actually a question that’s getting explored quite a lot at the moment and not even for that age bracket where there’s a real obvious need for it but also at that age bracket where you’re looking at some of eight to 11 year olds. And I know we went through this experience with Zack where there was no way I could send him into the men’s by himself. A, he didn’t know how to dress himself and undress himself. B, he probably would never have come out or he would’ve done something that other people were challenged by or didn’t understand or… But then I had this situation where I was… Clearly, other people were not comfortable with him being in the women’s change room either. And there was also the potential for him to possibly say things or do things that were going to make people feel a little bit uncomfortable. And how do you do that and how do you navigate? And he was an able bodied person. So that brought up the whole issue of, well, can we use the all abilities toilet or not? Is that okay?
Carrie: Well, it’s not big enough.
Zoe: What are the rules? And then we would go and try and use that. And it still wasn’t really big enough for [inaudible 00:29:53] a big kid. And by the time he got three adults [inaudible 00:29:57] in there, it was still quite difficult to do what we needed to do in that space because change rooms are bigger for a really obvious reason. But then the disability toilet is at the end of the day a toilet and there isn’t really enough space. So those experiences, I think have been really interesting-
Carrie: And it’s been really great to challenge an organization to say, “Hey, guess what? We’re not doing this so well. What are we going to do?” So it was really a good eye-opening experience for the rest of the club. And that’s where the rest of the club I think has benefited by looking at how we do things. And that leads into how we… At the language we use and how we communicate and what’s okay and what’s not okay. And actually that’s not a really respectful way of communicating and things like that as well. So yeah, it leads to a lot of other thoughts they hadn’t thought about.
Zoe: But also it’s had a huge ripple effect. Just little things like we’ve got a really big community now that uses the canteen along the side with everybody else. So the people that are working on the canteen often wouldn’t have otherwise been in that world but are now learning, getting experience in that. I’ve had some feedback that they were like, “Yeah, well, I was in the shopping center and there was this person. But it was all good because he was just the same as Zack down at Starfish. So I was able to help the mum out and able to do something for her. I understood what was going on.”
Carrie: It’s that… What they’re calling-
Zoe: That ripple effect-
Carrie: … disability confidence and they feel that confident so to say. Actually, no, that’s not that strange. And it’s not that hard and all of that sort of thing. So they actually feel not… They… Yeah, it’s that confidence and actually disability is not that hard. They’re all human beings and needing care and respect like everyone else. They just do it a bit differently. So let’s figure out what they need.
Speaker 5: [inaudible 00:31:45] a great way to break down discrimination isn’t it. It’s just to have people exposed to each other. And we don’t see somebody with different needs or different abilities, then you might not have that confidence or you might discriminate.
Carrie: And that’s what’s been gold in having siblings. So we’ve actually had a number of families that came and were just, “Hey, I have got a number of families that have got siblings and we’ve got two Starfish.” Or what’s even better is you have a Starfish and a sibling in regular Nippers. And the regular nippers are like. “Yeah.” And the starfish go, “Yeah.” Back and they’re saying, “Oh God, who’s that?” And they say, “It’s my sister.” Or, “Rosie. She’s in Starfish.” And they go, “Why is she in there?” “Well, she does things a bit differently.” And they come over and there’s that interaction and whatnot and it just normalizes it. “Well, that’s Rosie but she’s my sister. Just like you’ve got a sister, I’ve got a sister and she’s in Starfish. It’s no big deal.” And just to normalize it. Actually, you know what? There’s a bell curve in society. How can [inaudible 00:32:42] tell you what. And not everyone is in that typical top of the bell curve and it’s okay if they’re not. It’s just a different part of the bell curve, maybe. What’s normal anyway?
Speaker 5: On the other… We’re very lucky because we’re locals or we are close to Hampton. Are there any other Surf Life Saving Clubs that are learning from what you are doing and doing similar things around Australia? Do you have a network of clubs?
Carrie: Yeah, there is. There’s… Starfish Australia started down in Anglesea with Janet Jones and they’ve been running a year before us. And there’s about 15 clubs in Victoria from Torquay right down to [inaudible 00:33:19] and Portsea and [inaudible 00:33:22] as well. But there’s a majority… And we’ve got 57 clubs in Victoria. So there’s a lot more that we need to get to. And the staff of Starfish Australia as far it’s across Australia and in [inaudible 00:33:35], Perth, Western Australia. We’ve actually now got a club in France who’s running Starfish Australia as well, which is fabulous. But once again, they’re not in every club. And yes, you need to be able to go down and access your local community resources. So you should be able to go down to your local beach and actually say… Actually they’ve got it sorted for… A beach map for my child in a wheelchair or for… He doesn’t walk particularly well. Unstable ground and things like that. So we have got a bit of a zest to get a Starfish program at least in every club in Victoria. We recently had a grant which we made a professional video which was supported by a video company to actually show the joy and the magic that we have. So just try and encourage more clubs to start and to actually encourage more parents to go down to the local club and say, “Hey, have you got a better Starfish program?”
Zoe: I was going to say it’s a really important two side of think. Because through talking to a variety of people and trying to support clubs to start up a new program is one of the things… Is that if they haven’t had the program before, if they haven’t seen the need and they genuinely… It’s not that they’re trying to exclude, they genuinely don’t realize that there is a need. So without people in our community going and approaching our local life saving clubs and saying, “Hey, I’ve got this kid and he really wants to or she wants to be involved.” They just don’t realize that it’s needed. Or a lot of people actually want to run the program but just really unconfident as to whether it’s needed or whether people will take them up. Or if we put the work in, will we get people? Will they come and be with us? So I think it’s really a two-way process where we need to also as a community communicate what we need and really push for those resources and those programs to be running.
Carrie: So in this video we actually show the benefit there is not only for the Starfish and families but also for the club but also for your local community as well. So there’s a really… It’s a win-win and our motto or our theme is that everyone belongs, everyone wins and that’s everybody.
Speaker 2: And it’s a great video. I’ve watched it a few times with Matthew. So awesome. A great sense of community like we’ve talked about today. Really awesome.
Speaker 5: Thank you so much for your time. I really have enjoyed having a chat. And as I said before, Louis loves coming down and we did get a video of him falling off the slide, which was hilarious. But you know what? He persisted. He got back up again and went down-
Carrie: Absolutely. He’s been down lots of times and not actually off the side. No he’s… Yeah, absolutely.
Speaker 5: So thank you so much for your efforts and your care and the joy that they have in coming down and having a swim and having fun.
Zoe: No, thanks so much also to your sons for taking up the challenge in coming and joining our community. I think the role models that they’re able to provide for the younger kids is also just so invaluable to the program and to our community at Hampton.
Carrie: And the joy they bring every week as well with their smile.
Zoe: They’re smile are just contagious.
Speaker 2: You definitely can’t miss them, can you?
Carrie: No, not at all. They’re just priceless.
Speaker 2: Thank you so much, ladies.
Carrie: Thanks for inviting us.
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 Podcasts. 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 email@example.com 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 131114.
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