Episode 1 – Fun and Independence

Hosts Dr Lisa Interligi and Kristine Christopoulos talk with Dean Cohen, CEO Flying Fox, about the importance of developing independence skills and having fun! Flying Fox provides camp experiences for young people with disabilities.

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. 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 with the Loop Me In community and listen to more episodes on our website loop-me-in.com.au.

Lisa Interligi:                    Welcome to Loop Me In, I’m Lisa and I’m joined by my co-host Kris. Today, we’re so pleased to bring you Dean Cohen, CEO of Flying Fox. Flying Fox is an organization that promotes connection for people with a disability through fun. Kris’s son, Mathew and my son, Louis, have both been on Flying Fox camps and had heaps of fun, but more importantly, they’ve had the chance to make friends around the same age and develop independent skills. At 29 years of age, Dean is making a big impact on the lives of young people with disabilities and their families. He has a Medal of the Order of Australia in recognition of his work. We hope you enjoy our chat with Dean. Okay. Thanks Dean for joining us. We might just start off with you telling us a bit about yourself.

Dean Cohen:                   Yeah. I can go as far back as you want. I am right now at the ripe old age of 29, CEO of Flying Fox. We run camps for young people with a disability and fell into that after I finished high school. Fell into the intern working in the world of disability, but did that alongside doing a commerce degree and was never going to go into the corporate world once I realized that there’s a need in the world of disability for passionate young people to do cool things and provide social experiences. That was a massive gap at the time. That was what now, 10, 11, 12 years ago. Through working with a few young adults with a disability, I realized that the social experiences were really the thing that was missing. There’s a lot of incredible speechies and OTs and people doing the hard yards in the world of disability and there weren’t that many people doing just the hardcore fun stuff. I fell into that and since then have been running Flying Fox very happily.

Kristine Christ…:             I’m nodding my head, Dean, because it’s when we fell across you with Mathew, it was just a great experience for him because there was never anything fun he did. All he did was go to an OT or a speech and it was amazing. Can you tell us the story how you got involved in the disability sector, because it’s quite a nice one?

Dean Cohen:                   Yeah. When I finished school, I got a call from a parent of a young guy with autism, who just heard that I played soccer and she just wanted someone to have a kick in the park with her son. She just wanted him to have a friend and I went along on a Friday afternoon, hung out once and then hung out again and again and again and ended up spending a lot of time with him and also working with him as a support worker for about two and a half years. Really, that was just out of nowhere. I had no personal connection to disability. I don’t have any relatives that have a disability that would qualify them for Flying Fox, if you can put it that way.

Through that experience, this young guy’s mum was an incredible teacher, supported me to learn all the skills that I needed to, not just to support him, but I think to be a disability advocate, to promote inclusion across all areas of my life and also gave me a lot of the theoretical knowledge too. I learned a lot about the nitty gritty of what autism was and then what was going on in the world of disability. I just was in the right place at the right time and ended up in an environment where I was mentored and empowered and also at the same time was able to support someone to contribute and participate in society the way they wanted to. It was a win for everyone.

Lisa Interligi:                    What made you join the young man in the park?

Dean Cohen:                   I think a little bit of, why not? I like soccer, he wanted to have a kick in the park. There was a common interest there. I wasn’t put in a situation where I had to do anything that I didn’t want to do. I was happy to go over, kick in the park. It almost didn’t matter who it was with, and disability or no disability, I probably would’ve said yes. I think that’s maybe a theme that we’ve kept going for a long time, that this is all about common interests and mutual passion for just having fun and spending time with friends and at the time, I think I was really happy just to do it and go along for a couple of hours and enjoy some time in the sun.

Kristine Christ…:             What made you choose to do camps, Dean? Where did that come from?

Dean Cohen:                   Yeah. I supported this young guy to go on a trip with 10 other people to Israel, actually.

Kristine Christ…:             Wow.

Dean Cohen:                   Yeah. We took this group for three weeks to Israel in 2011. That was an experience that… Every young Jewish person has a coming of age experience where they get to go to Israel after school and these guys have missed out. In supporting him [inaudible 00:05:52] experience, that was when I really realized that the fun stuff, the social stuff, these life changing immersive experiences that we all have at the age of 18, 19 20, when we travel to Europe for the first time or wherever we go, I realized that was a gap. Then I moved to Sydney for a year for, the now wife and we volunteered on a camp in Sydney that we really liked that the model didn’t really exist in Melbourne and came back a year later and started our first camp.

Before that, I was part of a Jewish youth group. I learned the power of these camps. I learned the power of going away for four days, being away from home, challenging yourself to get involved in activities that you never would in your normal life, being up at the talent show and being forced to be out of your comfort zone and have fun doing all these crazy things that you do on camp. But also, there’s nowhere to go. You’re on camp, so you have to get to know the people around you. You have to challenge yourself to sit next to a different person at lunchtime than you did the day before, you can’t just stick to your friends.

I really, really just love the model. I think that it works really well. Then we were able to turn that into a safe experience for young people with a disability, by having the right amount of volunteers, the right training for those volunteers, the right amount of professional staff. We were able to really cater or adapt that camp model to a model that would suit absolutely anyone regardless of interest, personality, but also diagnosis and support needs.

Lisa Interligi:                    Yeah. I remember when Louis first attended his first camp that I didn’t sleep, I think for the whole time, because I was so nervous about him being away from his little bubble.

Dean Cohen:                   Yeah.

Lisa Interligi:                    How’s your experience with other parents? Is that a similar experience that you’ve had to deal with in their first camp?

Dean Cohen:                   That is definitely a common experience. We have lots of parents that if we are going to the Mornington Peninsula for a camp, they may or may not be at an Airbnb around the corner. We’re okay with that, if that’s what parents need to do to allay their own anxieties, then great. I think I probably typically had two different experiences with parents. There’s the parents who when we ran our first camp said for lack of a better word, “We’re desperate. We need this experience for ourselves, but we also need our kid to have this experience where they can go and make friends because they’re lonely.” That’s a common thing that we’re told. Those parents just said, “Yeah. Take our kid. Keep them safe, but just take them.” Then the other side of it is the parents who turn around and say, “You know what, we need a bit of convincing here.”

We’re happy to have those conversations because both sides, both of those two experiences come from a place of love. Both the parents that anxiety dictates their actions and the parents who are maybe more willing to just say yes, but also out of a place of, we really need this. In both cases, it’s from a place of love and we will work with parents regardless of how they feel to make sure that they know that we’re going to look after their kids and keep them safe, happy, and healthy the whole way through. The more fun we can provide, the more our campers want to keep coming back, and parents are more comfortable that their kids are in good hands. But if we don’t create a bubble of safety first, then no one’s going to be able to let their hair down.

No one can have fun being away from home unless they are made to feel safe first. When we talk that through with parents, the message comes across that we are the right people. One of the pushbacks that we do get though is that we’re young. I’m the oldest person in the organization and I’m 29, and how do we know that we are the right people? How do we know that we can support people, often with quite complex support needs? My answer is that we are the ones that, not we, just Flying Fox, we, young people are willing to go above and beyond to meet the families as many times as we need to. We’ll have Zooms and go over to people’s houses to get to know the families and the individual themselves. We’ll do the extra training.

We’ve supported people to do PEG feeding training, and epilepsy management and all these different bits and pieces that if that’s what’s required to make sure that we can keep someone safe and to make sure that parents are comfortable sending their kids away with us, then we’ll do it. The energy of the young people that we have within our network is the defining feature of the organization, but it’s also something that is going to shape inclusion long-term in society. We’ve got so many incredible people that are passionate about this space now, and parents can be really optimistic about what society is going to look like in the next five, 10 years, because of what we are seeing with these passionate young people coming through.

Kristine Christ…:             Dean, give us a rundown of what a camper can expect when he comes on your camps.

Dean Cohen:                   Just the fun stuff. Yeah. That’s really the goal, the goal’s fun and making friends. We take people away for four days to different campsites around the place, and we just do anything fun you can think of. Ropes course, flying fox, of course we have to do the flying fox, talent shows. What else do we do? We go swimming, we… yeah. Just all the fun things that we can come up with. That’s typically an experience for four days with 25 young people with a disability supported by 50 volunteers. We pair two volunteers up with every participant. The volunteers are called Buddies, and then staff on top of that, nurses, a psychologist and our team as well. Then we also run weekend getaways for six or seven participants, supported by seven or eight staff and volunteers.

They go to our very own holiday house up north, an hour out of Melbourne. We host a really chilled, intimate, relaxing weekend away where we actually do my favorite thing that we do across the whole organization, which is, we can go on all the flying foxes in the world, but actually, if we can just go for coffee with friends on a weekend away, that is life changing because we work with people who so often miss out on those experiences, and that’s what defines our weekend getaway is that you’re just hanging out and you’re doing exactly what anyone does when they go away with mates. Those are really the two programs, the big camps, and then the weekend getaways. And-

Kristine Christ…:             I think for Mathew, when he gets home, that’s when we know he’s had a good time, because he’ll sit at the dinner table that night telling his sisters. I think the biggest thing is what you said before, it isn’t just all the activities you do, it’s even just sitting and having the barbecue. I know you do a barbecue and watch the footy if you’re going at that time of year, and that’s one of his favorite things to do with the guys.

Dean Cohen:                   Yeah. Absolutely.

Kristine Christ…:             Yeah.

Dean Cohen:                   More and more our participants are choosing the activities themselves. That’s obviously something that needs to be a core part of the organization. We are working on facilitating that choice more and more within the organization. Then, if Mathew wants to come along and watch the footy and he wants to watch five games of footy and that’s what he wants to do for his weekend, great. We’ll find other people that want to do the same thing and we can make that happen. Overall, it’s just fun with friends and sometimes when I say it like that, it might undermine the impact of the organization, but fun is a human right. People just having fun and making friends is such a core part of our human existence. Like I said, at the very beginning, there’s so many incredible people who make sure that young people with a disability can develop the skills they need to, to navigate the world. We’re filling in a gap in making sure that people can have fun and make friends through that experience too, of just growing up.

Lisa Interligi:                    Yeah. I think expressing what you want to do, for people that are often told what to do, is part of that developing independent skills. What are the independent skills, do you think that your camp has developed through the process?

Dean Cohen:                   Yeah. It’s a good question, because just by being away from home for four days, you develop a lot. Just the level of maturity that people can come out of our programs with is always really interesting to see how people grow. Definitely independence, some funny things. Like on day one, a lot of parents might think that their kids need help brushing their teeth, but by day four, I’m like, “They can brush their teeth.” Funny little things that people don’t normally get to challenge themselves with, because when do they go away on their own just with friends for four days? There’s a lot of growth in ability to navigate new social environments. You might walk into the dining room on camp and it’s overwhelming with 100 people, and on day one you might actually turn around and say, “You know what, let’s eat outside today.”

But by day four, you might be able to choose, “Yeah. I want to go sit next to that person. I like that person and I want to engage with them.” That’s a big one. The best feedback that I’ve ever received about Flying Fox is when one of our participants who turned 18 and he finished school and he transitioned into a day service, and his mom called us and said, “Because he had come on four or five Flying Fox camps, he had learned to navigate new environments and was able to transition out of school into a new environment, much more seamlessly than he otherwise would’ve been able to. That’s pretty powerful, I think. I think that’s a really nice thing to hear. It’s a really cool bit of feedback. This is for a camper who didn’t actually get involved very much in activities.

He didn’t really participate in too much. He didn’t connect with a lot of the other campers in the way that maybe we think is success, but he had his own experience. He came along for four days at a time and just learned how to be away from home and learned how to be around other people. He probably did connect, just in his own way and we probably just didn’t notice it at the time. But all those things allowed him to transition out of school a little bit easier than he otherwise would’ve been able to.

Lisa Interligi:                    Yeah. I mean, it’s one of the things that I know Kristine and I, and other parents have discussed, what happens when we get old and we can’t look after our kids anymore. The real need to develop independent skills prior to that is so important, so that they are prepared to live a life that’s more on their own or with other people. Not everybody can have their great experience of a Flying Fox camp. What tips do you have for parents to help their children develop those skills?

Dean Cohen:                   Yeah. I’m not a parent myself and I definitely would always just temper any bit of advice that I would give anyone with the knowledge that I don’t have though that lived experience. But one thing that I’ve seen work really well is parents who are able to develop trust in other people in their kids’ lives, open a whole new world for their kids. That includes having support workers or younger people who are working as support workers come into their lives and trusting them with their kids and trusting them to try new things and to have different experiences. We have quite a few participants who will do things like go on holidays with some of our Buddies. As support workers, they’ll go away for a couple of days and that’s facilitated by the families obviously, but that can only happen if the parents trust these young support workers.

Yeah. I think also having… One of the hardest things that I see parents navigating through is having a home effectively with an open door policy, with so many people coming and going as support workers and as therapists. I think in doing that, if the support workers and the other people in their lives are made to feel included in family life, I think people stick around. I think a lot of people around us develop a real love, not just for the individual they’re working with, but for the families they’re spending time with. I think that means that those individual participants are going to have those support workers in their lives forever into the future, whether they’re in a paid support work role or not. I mean, Kristine, with Mathew, he’s got Benj, and Layla, and all these amazing people that-

Kristine Christ…:             In his life right now. Yeah.

Dean Cohen:                   [inaudible 00:19:33].

Kristine Christ…:             Which [inaudible 00:19:34] never…. I’m nodding my head, because we only introduced Mathew to younger carers or even carers in general when we came on some Flying Fox camps.

Dean Cohen:                   They’re not going anywhere now, Layla, and Benj, and all these other people are going to do whatever they can to stay involved in Mathew’s life. They’ll come in and out like everyone else that any of us have in our lives. But I think that open and inviting atmosphere that you’ve created has obviously flowed onto the love that these people have for Mathew and the enjoyment that they get from having them in their lives. That’s probably a message that I could give, but again, I would never presume to give too much advice to people who navigate through some really challenging situations that I don’t navigate through in my life.

Kristine Christ…:             Yeah. Has there been any challenging part of your job at the moment, Dean, working on the Flying Fox? What’s been the biggest challenge? Is it the parents?

Dean Cohen:                   No. Parents are the biggest task in that, we’ve had to work really hard over the years to gain the trust of the parents, but parents are our biggest partner. If we can work together with the parents, then we can provide successful experiences for all of our participants. I think that the challenge is maybe navigating through the NDIS and making sure that we can grow quick enough to provide opportunities for people who need them, want them, and now actually have funding for them. Just because the money’s there, doesn’t mean that we can grow quick enough because there’s now a lot of red tape and bureaucracy, and all that stuff’s there to keep people safe, but we do have to navigate through it.

Yeah. Just then, then there’s also making sure that everything we do as we grow is as high quality, is as world-class as everything that we’ve run up until this point. We are just growing very cautiously to make sure that every single person who gets involved always has the best time and is as safe as if they were sitting in their own bedroom at home. We just need to keep people… yeah. People have to be safe, happy, healthy, welcomed, feel the sense of warmth that we create on camp, and if we can’t do that at twice the size, then we shouldn’t be twice the size.

Kristine Christ…:             Yeah.

Lisa Interligi:                    What’s a funny story you can share with us?

Dean Cohen:                   Funny story about… oh, there are so many funny stories. One happened to me last week and this is just… I… We have younger participants who get involved and I don’t know if I should share, I can share this. I’m not going to share any names, obviously. We have younger participants who get involved. We start as young as eight year olds who often always are spending their first night away from home with us. That’s something that I’m really proud of is that we support people to have experiences that maybe they wouldn’t be able to till they were much older, but sometimes people need a lot of guidance and support when it comes to things like toileting.

We had to take a group photo. There’s 100 people going in this group photo, and one of our Buddies, one of the volunteers, one of our Buddies, he wanted to go in the group photo and he was supporting an eight year old camper. I said, “You go in the photo, I’ll hang out with this camper.” This is literally a week ago. The camper decides he’s not interested in me. He’s going to walk into the dining room. He’s going to pull his pants down, and put me in a position where I am cleaning up the floor.

Lisa Interligi:                    Aw.

Dean Cohen:                   It was hilarious, because I didn’t know this kid. I knew him enough because we’ve been on camp for a few days, but it’s like, there’s 100 people, including all the nurses and everyone having a group photo and I’m there hanging out with him. He was doing it to be cheeky. He was not doing it because he couldn’t hold it in. He was doing it to be cheeky. That’s a day in the life for us sometimes.

Lisa Interligi:                    Yeah. He was establishing the power base there.

Dean Cohen:                   He won. He 100% won.

Kristine Christ…:             He won, definitely.

Dean Cohen:                   We’re not that keen on world domination. We like what we do. We like our campers, and we love our campers and our Buddies, and we want to keep supporting them. We’re open to ideas, but really we’re just going to keep doing what we do.

Kristine Christ…:             Yeah. Well, I’m looking forward to it, so is Mathew, I think.

Dean Cohen:                   Good. Good.

Lisa Interligi:                    Yeah. Well, thanks for your time, Dean. We really appreciate you taking the time out and sharing with us your entrepreneurial spirit and also your inclusive passion and the love and the care that you show young people with disabilities, including our sons.

Dean Cohen:                   No problem. Thank you for having me.

Kristine Christ…:             Thanks Dean.

Dean Cohen:                   Thanks guys.

Kristine Christ…:             Wow, what an inspiration Dean was today. We hope you enjoyed that podcast. The message that came out of this podcast today I think was the importance of our kids having fun, making friends, and being around people within a similar age. Connecting with people and having fun is really what anyone wants at any age. I also loved his tip about putting trust in younger carers and opening our doors to these people. I think it’s really important. What I also found inspirational, that Flying Fox is not only doing camps and creating a community of young people who care and connect with people with additional needs, is that Dean is also developing an ecosystem of businesses that provides services to people with a disability. Something that I think will grow and grow throughout the years to come. We hope you enjoyed today’s chat and we look forward to talking to you next time.

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 contact@loop-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.

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 13-111-4.

 

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