Family life with cerebral palsy and the travel adventures experienced with Bronwyn Leeks. 32 Countries and counting!
Welcome to Season 2 of The Brain Game Changer podcast. I am your host, Melissa Gough. In this week's episode I had the wonderful opportunity to speak with Bronwyn Leeks, who is supporting people with a disability at home, in the water and with global wheelchair travel.
Bronwyn discusses the opportunities of her childhood travels and how she wanted to pay forward these unique experiences with her own children. Fast forward she talks about her oldest child Cooper who was born with Cerebral Palsy, advocating for him and wheelchair accessibility, navigating family life and how, at the moment, has conquered 32 countries and counting.
Brownyn gets candid about how being in fight or flight mode for 16 years led to a breakdown and how everyone should go through one to find out who you really are and what you want in your life. Let’s get into the interview.
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Melissa Gough 0:05
Welcome to The Brain Game Changer, where heartfelt stories, awareness and education can change the game. My name is Melissa and in each episode, I talk with inspiring humans and organisations from across the globe, who share significant adversities, triumphs after tragedy, and those game changing moments to provide you with some useful tools and resources to take with you into your everyday life.
Melissa Gough 0:30
In this week's episode, I had the wonderful opportunity to speak with Bronwyn Leeks, who is supporting people with a disability at home, in the water, and with global wheelchair travel. Bronwyn discusses the opportunities of her childhood travels and how she wanted to pay for these unique experiences with her own children. Fast forward, she talks about her oldest child Cooper, who was born with cerebral palsy, advocating for him wheelchair accessibility, navigating family life, and how at the moment has conquered 32 countries and counting. Bronwyn gets candid about how being in fight or flight mode for 16 years led to a breakdown and how everyone should go through one to find out who they really are, and what they want in their life. Let's get into the interview.
Melissa Gough 1:21
Good morning Bronwyn and welcome to The Brain Game Changer podcast. It is great to have you with us today.
Bronwyn Leeks 1:26
Thanks, Melissa so much for having me.
Melissa Gough 1:29
What a journey that you've been on Bronwyn and there's many layers that we could go into. But like I do with all my guests, I get a little bit of a backstory because what I've sensed with you in some of our conversations is, travel has been a huge part of your life. And it's been a transgenerational part of your life within your family, just wondering if you can just share with us how the travel, I guess experiences all came about for you.
Bronwyn Leeks 1:56
So I fondly remember sort of talking to my grandparents about all their travels and looking at all their photos, you know, from the 60s and 70s, what they used to do. Then my own dad and mum met while working for an airline, and then they travelled sort of around Africa together came back and ended up having me. Then when I was little my dad also worked for an airline, for ANSETT. So we had more opportunities than most to jump on a plane and you know, be able to explore different cities around Australia and also to be able to go overseas to have different experiences to be exposed to different cultures and diversity overseas.
Melissa Gough 2:32
I'm going to lean into you sharing a story which we shared off air, but I'm going to get you to share it with us on air where you are in Queensland and you were visiting was at The Big Pineapple.
Bronwyn Leeks 2:42
It was my siblings and I, so I have two younger sisters, and we were visiting the big pineapple and we had the fruit salad and ice cream, and it was delicious. I still remember! It had like little bits of fruit in it, and then we started throwing little bits of fruit at each other just to annoy each other probably! We had driven up there anyway, so we're all you know, had been in the car for three days or whatever. Then we started throwing a bit of food and my dad was so horrified because he had done a lot of extensive overseas travel and had seen, you know, a lot of famine and hunger and poor living conditions and not much access to food. He was horrified that these three little white privileged girls were throwing food at each other. So he said,' that's it!’ ‘Next holiday, we're not going to Queensland, I'm taking you to Sri Lanka,’ true to his word, he booked a holiday, mum stayed at home. He took the three young girls. I think we were 13, 11 and 9 at the time, we hadn't really been overseas and had much or been exposed to many differences yet. We got the shock of our lives, but it's remained with us forever.
Melissa Gough 3:44
So it sounds like some wonderful travel experiences and yet also being exposed to sort of overwhelming, poignant humbling experiences where it's just a totally different world and a totally different culture and that sort of life lesson you can't get in a classroom, you are getting it firsthand right in front of you.
Bronwyn Leeks 4:04
Totally! I think you know, we always laugh about it. Because you know, during the 80s you might go to Hamilton Island for a holiday or you might go to Tasmania, but my dad decided, you know, Sri Lanka and at the time there was a war between the Northern Tamil Tigers in Sri Lanka and the southern part of Sri Lanka. Dad didn't worry at all about that and just wanted us to see, you know, a lot of difference and people living with not as many material possessions as we do and it's as clear as anything! I can still smell the smells of walking down the street and seeing people with obviously lots of visible disabilities, sort of wheeling around on the street and it was a massive, a massive moment for all of us on that trip. We never looked back really; we just wanted to recreate that and get that adrenaline rush again.
Melissa Gough 4:50
What an experience and then we're going to fast forward now and you meet your lovely husband, Andrew and you both also equally want to instil these wonderful values and travelling opportunities into your future children?
Bronwyn Leeks 5:08
Yes, that's correct. And I think we wanted an opportunity, I guess, to travel together and explore a little bit. We've had these plans to go to Vietnam to start exploring together. However, we fell pregnant with Coops quite quickly, more than what we sort of thought we would, and we didn't really get the opportunity to travel, just Andrew and I. However, once we then had the children, it was a really, really important thing that we wanted to instil in our kids, and especially due to Cooper's disability, we really wanted to show the kids that they can do anything and go anywhere.
Melissa Gough 5:41
That's a great segue, because we're going to lean into you having planned to travel and then you sort of had your own internal timeline about pregnancy. Then you know, the universe throws you something else and says, Well, here's your little one, and then it's coming now. So you found out you're pregnant with your first child, Cooper?
Bronwyn Leeks 5:57
Yep, I remember, the day actually finding out that I was pregnant, I think I did, I don't know at least 10 pregnancy tests, because I couldn't really believe that it would happen so quickly! We were both super, super excited. And you know, looking back, very naive, I guess, in, you know, what can sort of happen during pregnancy or during birth. But we're in a blissful, you know, nine months of pregnancy. It was a very easy pregnancy, very normal, and decided to come with, you know, 40 plus weeks, one day, and he was ready to enter the world.
Melissa Gough 6:33
So we're going to learn a little bit more about Cooper entering the world, things didn't go normally, traditionally, as a labour goes.
Bronwyn Leeks 6:43
No, that's right. I think, I often sort of liken it to the fact that the baby that I was pregnant with for nine months was actually a different baby than the baby that I gave birth to. Because the baby that I gave birth to received a brain injury from lack of oxygen and the cord being around his neck, and a few other things sort of didn't go as planned. So essentially, I gave birth to a different child who received a brain injury during that birthing process.
Melissa Gough 7:13
There's so many layers to that.
Bronwyn Leeks 7:15
Hours and hours of layers!
Melissa Gough 7:17
I can only imagine. But I'm just going to ask you, what you want to share and want to say, is after Cooper's born, and you've gone through all of that, the fear, you explained that he's rushed off and you didn't get to spend a lot of time with him. Can you talk us through that moment?
Bronwyn Leeks 7:34
From what I remember is that I still have all those birthing highs because I obviously gave birth to a child. But I didn't get to have that traditional experience of holding the child in my arms or, you know, skin to skin or breastfeeding or celebrating essentially, because I just remember looking out of the corner of my eye and seeing Coops like, on the resuscitation table, and he was as white as anything. He'd gone through all the stages of colours and was really, really white. He wasn't breathing and his heart rate was basically not there. So they were trying to resuscitate him. But I was still sort of feeling quite elated because I'd given birth, but it was the two feelings that didn’t match each other. So Coops was rushed off with the neonatal intensive care into a big city hospital, where they sent me a photo of Coops and said,' you might not get to see your baby alive again.’ ‘Here's a little photo to remember him or to acknowledge, I guess, acknowledge that he had been born.'
Melissa Gough 8:36
Gosh, what a moment! Like you say you're in hospital, you're going through many different emotions and your body is also just gone through something so significant.
Bronwyn Leeks 8:46
Yeah. I felt amazing because I had finally given birth and the pain, you know, from the last 24 hours, it stopped. Oh, it was a complete state of shock. I remember just looking at Andrew and he was in complete shock. They were talking about brain injuries and lack of oxygen and, you know, 50 million people came sort of rushing in the room and it was like some sort of weird dream. It was very strange. I wasn't really, it was like I was looking down on everything. It's very, very weird. Yeah.
Melissa Gough 9:12
Very much an out of body experience. Almost like you're watching a movie that's not happening to you.
Bronwyn Leeks 9:18
Some sort of nightmare! Yeah.
Melissa Gough 9:20
So he gets rushed off to another hospital. What happens next?
Bronwyn Leeks 9:25
So I just had to stay in the hospital, just to make sure that I was okay because I'd had a few issues and had to get those seen to. Then the next morning, Andrew came back to the hospital to pick me up. My mum stayed with me that night at the hospital. I don't think I slept, maybe for a few hours, I don't really sleep very much. Then Andrew came and got me and we drove into the city to meet Coops for the first time. He was in intensive care and at the hospital for a month. He was having a lot of seizures and because he brain had been so traumatised, they were just waiting to see really what the effect of that lack of oxygen was going to be.
Melissa Gough 10:05
So after a month, you're allowed to take Cooper home, what's the journey and the process that starts taking place as you step through your doors into your home with a newborn, and everything that's occurred?
Bronwyn Leeks 10:19
It was so surreal, that really, really was very surreal, because we'd have this month of having to ask permission to anything we needed to do with Coops and we then got home, we were now in charge. Except that we would have visits every day from hospital staff and therapists and that sort of thing. So until those sorts of visits stopped, it didn't really feel like he was ours, and that we had the control over the situation, because so many other people were involved to make sure that he was going to be okay. So it was just a different, very different parenting experience than you'd typically have.
Melissa Gough 10:56
So you're getting a lot of visits, who's coming to visit you and to support you from the medical team?
Bronwyn Leeks 11:01
We had a nurse coming in every day, I think for about a month, whose name I cannot remember. But she was fantastic, once sort of the nursing side of things, because that was because he was still being fed through like a nasogastric tube. And then after that, it was a lot of, you know, linking up with a lot of different services for physio, and occupational therapy, and speech therapy and feeding and we just hit the ground running really, there was no relaxing and really enjoying your baby. It took a long while for people to congratulate us, I think for the birth of our baby, because everyone was too scared to say congratulations, because we didn't know what was going to happen to him or if he was going to survive, or what was sort of going on. I always make it a point now that if I have someone that's had a similar situation, I always first congratulate them because you have given birth, it doesn't matter. You know, you need to acknowledge that.
Melissa Gough 11:52
So when did the diagnosis take place that it was cerebral palsy?
Bronwyn Leeks 11:58
So Coops was only like three days old, and he had all these seizures because of the brain injury and the trauma. On day three, when he had an MRI, they did say that they expect that he will have Cerebral Palsy, discussed the part of the brain that was damaged, and it was just sort of a wait and see to how his cerebral palsy was going to affect him. Because everyone with CP is affected in different ways.
Melissa Gough 12:24
So I'm just going to share with our listeners that Cooper has been diagnosed with, I guess, the terminology now that is used is dystonic cerebral palsy. The part of the brain that was damaged was the basal ganglia, which impacts motor control movement and executive function. That part is situated near the centre of your brain that forms the important connections, it manages the signals your brain sends to help you move your muscles. And that's sort of impacted Cooper quite significantly.
Bronwyn Leeks 12:55
Yeah. That's exactly how he presents, in that when his lies still in bed, you might not necessarily know that he has CP. But as soon as he tries to move, that's when you know that he has cerebral palsy. I think it goes to show you know how many muscles in your body you actually have, because it affects absolutely everything. I think originally when they said cerebral palsy, I immediately thought of the comedian Steady Eddie, because that was really the only exposure that I've had to cerebral palsy when I was younger. I thought, maybe you know, Cooper will use a wheelchair, I never imagined how much that his brain injury would affect his speech because of the fact that your whole mouth is full of muscles. The message is getting sent to his tongue in his mouth, and they, super significantly impcted. It's fascinating, really.
Melissa Gough 13:42
Can you talk us through the first couple of years that you're making these huge adjustments to life with Cooper who has cerebral palsy? What was, I guess, day to day living? What did you have to do? What couldn't you do? How were you going internally as well?
Bronwyn Leeks 13:58
I honestly didn't sort of process it or grieve or anything… As I said before, I just hit the ground running and doing everything I possibly could to give Cooper every opportunity to be the best little person that he could have been. In saying that, I would also allow myself lots of breaks from taking him to therapy because that was a constant sort of smack in the face. It's something that I hadn't realised would not go how I thought it was going to be. So we would have some days where we'll be doing lots of physio and OT and speech and feeding and whatever. Going to different playgroups and I guess stepping our feet a little bit in this whole disability world that I didn't know existed. Then other days I would just you know take Coops down to the park or the beach and try and do what I would think is a typical thing. I think when you have kids, a lot of how you parent and the experiences that you want them to have is based on what experiences you had yourself as a kid. I had to learn that those experiences I had as a kid, I wasn't gonna be able to portray them as such to Coops because he had a disability. I hadn't had experience with that, of what that disability is going to look like, you know, to parent, a child with a disability, let alone him having his own journey of having a disability.
Melissa Gough 15:15
As you stated earlier, and you know, talking about, the experiences that were instilled in you growing up and travelling being such a big part of that, when did you decide, to step forward and go, right, okay, we're going to give travelling a go, we're going to get on a plane, and we're going to take Cooper with us, and we're going to go experience a different part of maybe Australia or overseas.
Bronwyn Leeks 15:39
I think the first trip we took, it was like six months, we just went up to Queensland to see all my family because my cousin had a baby around the same time as I did, which was really lovely for the kids to meet each other, but then equally traumatising, because it was a side by side to six month old babies developing completely differently. After that, when Coops was about two, we heard of alternative therapy that was being offered in Singapore. We thought 'well why not meld these two things together of therapy and his disability as well as being able to access different parts of the world.' Let's just do it! All of our family and friends rallied around and we did fundraisers and a really close girlfriend of mine, her parents, donated their frequent flyer points to give us the flights. We raised money to be able to access this therapy, and we jumped on a plane, and we haven't looked back after doing that. It was one of the best experiences. To meet other families of kids with CP, but equally, to have that adrenaline rush of getting on a plane and travelling somewhere different and the sights and the sounds and the smells and see how much Cooper loved it, as well, we haven't really looked back after that.
Melissa Gough 16:49
Would you like to share about what the holistic, sorry, what did you call it again, it was.....
Bronwyn Leeks 16:54
It was like an alternative therapy at the time. But I don't know if it's sort of an alternative now, because I think it's probably become a bit more mainstream. It had a lot to do with massage therapy and getting down into the really deep layers of the myofascial in your body and your muscles and sort of strengthening you from the inside out. It was a big commitment to do the therapy. We had to learn how to do the therapy and then implement it at home every day, with Coops. He made some massive, physical gains after doing that therapy, whether or not it was just him or the therapy or a bit of everything. He was then at age two and a half, able to sit and be on his knees and kind of his whole core strength had gotten a lot stronger. Once that had happened, and the flow on effects were huge for him being able to be a bit more mobile.
Melissa Gough 17:43
That's amazing! It's so wonderful that everyone rallied around, you just had the most and still have the most amazing support network and cheer squad behind you.
Bronwyn Leeks 17:51
Yeah, another funny little story, though, just thought of it… was that from when I was 18, to when I was 28, my parents separated. They had 10 years where they were not together. When Cooper was born, there was obviously a lot of trauma and grief and also celebration because Coop was the first grandchild on both sides to be born. You know, it rekindled my parents' partnership in that they then realised life is very short, and maybe they can forgive each other for what had happened in their past relationship and they could get back together. So
Melissa Gough 18:26
Wow!
Bronwyn Leeks 18:27
So Cooper always says that he got his nanny back together!
Melissa Gough 18:30
The power, the power of Coops. I love that!
Bronwyn Leeks 18:32
That's the beautiful power of trauma! You can always tell people that have had something traumatic happen because they're really open and honest and able to say how it is… I quite like that!
Melissa Gough 18:42
Well I describe us who have gone through different adversities, I describe us as the agents of change. That we are the ones who have seen life through a very different lens, we've had our life right on the line, and it could have gone either way. So when you do make it through, you come out the other side with a different mindset, totally different lens and we're the ones who now aren't afraid to step forward and be those agents, be the innovators of change. Because we've lived a different way.
Bronwyn Leeks 19:15
Yeah definitely! I know that I'm speaking purely from parenting a child with a disability and having that experience of birth trauma and then parenting Coops. But then equally Cooper is on his own independent journey with having a disability and I would never try and say that I understand having disability or anything like that, because I don't. But I can see Cooper's progressions and how he's become who he is, because of his disability.
Melissa Gough 19:44
One thing you mentioned earlier is that it does impact the muscles in Cooper's mouth and his speech. Cooper is emotionally insightful, emotionally intuitive and intelligent. How did you learn the ways of how Cooper was trying to articulate his thoughts? What was that process like?
Bronwyn Leeks 20:05
So, from early on, we realised that Cooper's speech was going to be affected by his CP. He couldn't breastfeed, he had a lot of trouble drinking from a bottle, he couldn't create a lip seal, or have that clear speech. I think when he was about two, he said the word 'hammer' when he was watching my dad sort of building something on a deck. It was very, very hard for him to create any sort of lip closure to get those sounds and that sort of thing. It's only now when we look back at footage and everything that we taped of him that we can see he was actually talking to us. Whereas I thought he was just babbling and not saying anything that made any sense. But now that I know his voice, he actually was speaking in sentences and everything at the age that you would be speaking in sentences. It just took us a while to learn. We used a lot of visual communication aids around the house, a lot of technology, and resources like that. Coop was always choosing to communicate with his own voice. He spent a long time thinking it was everyone else's issue, they were silly because they couldn't understand him. In his head, it's all clear, and he understands everything that he's saying.
Melissa Gough 21:17
Yeah, and that's understandable. Like you said Cooper is very switched on, and very able to be present with you in that moment.
Bronwyn Leeks 21:25
That's right. That's right.
Melissa Gough 21:26
It's just his speech and the articulation that's been impacted. But I sort of loved the fact that he thought that everyone else had the issue, and that it wasn't him.
Bronwyn Leeks 21:34
It's hilarious!
Melissa Gough 21:35
I love that!
Bronwyn Leeks 21:35
He's been very egocentric since the day he was born, and he still is! I cannot remember what class he was in, but we recorded something with his voice, and then we played it back to him. It was a massive lightbulb moment for him because he was like, 'oh, my God I can't understand what I’m saying.' So he's then got a little bit more empathy for people who can't understand what he's saying. But he tries really, really hard, and he's figured out lots of different ways to communicate with people. His speech is getting much easier to understand as his mouth is getting a little bit stronger, and I guess, he is able to coordinate it. So I think with his dystonic, CP, it's all about, how the muscles are coordinating themselves and him trying to teach himself how it all sort of works, really.
Melissa Gough 22:22
So through this journey that you're going through with Cooper having lots of treatment, lots of physio, lots of alternative options. You also find out that you're pregnant with baby number two. Can you tell us about that?
Bronwyn Leeks 22:38
Yeah, well, that was, it was probably a good couple of years of discussion of whether or not we were going to have another child. I guess, I was still quite sort of traumatised about the whole birth experience and things that can go differently than planned. We were in the middle of this intense therapy for Coops, trying to get him to be, you know, as mobile as possible. I guess that we decided, yes, we will have another child because the benefits of having another child far outweigh not having another child. We really wanted Cooper to be able to have a sibling and for things in our household to be a little bit more balanced. Equally, I really was craving the typical experience. I felt like I was a bit robbed the first time so I really wanted to just have this typical experience of having a child, so we decided to start trying to conceive another baby, and that took about six months for that to happen. Then we found out that we were pregnant with a little girl who is Cooper's little sister Pepper!
Melissa Gough 23:45
Beautiful. What I admire is you decide to take Cooper and your nine month old, off to Vietnam and backpack for a month. That's amazing! Talk us through that!
Bronwyn Leeks 23:57
I know! I don't really know what we're thinking at the time...
Melissa Gough 23:59
Either amazing or crazy!
Bronwyn Leeks 24:01
It's a bit of both! At this stage, Coop's is four and his motor skills as far as that sort of goes, he could sit. But basically, he still had quite high levels of care and still needed someone to support his mobility and eating and his whole being of self care , that kind of stuff. Pep's is nine months old, obviously still needing all those similar supports as well. I think it was the time that AirAsia started having some cheap flights out of Melbourne and we thought llet's just go and we've just jumped on a plane, invited about 20 family and friends along because Andrew and I had this like faux marriage ceremony in Mu Nai, just north of Koh Chi Minh City. We jumped on and off buses, and I had Peps in a little baby sling, and she was still breastfeeding. We went up to the hill tribes in northern Vietnam, and I sat with the women there and I was breastfeeding Peps, and they were breastfeeding their babies. We also had Coops in a bit of a sling because he was still, little enough at four years old to sort of be carried around. We spent our days eating and chatting with people and swimming, and just really embracing I guess, the Vietnamese culture and exposing our kids to that, and having conversations with people about disability and putting it out there, and that it's not taboo. You don't need to hide your child with a disability at home. They've got just as much right and opportunities to be able to come and explore.
Melissa Gough 25:29
I love your tag on your Instagram page, it says - creating awareness about worldwide wheelchair access, and you've already conquered 32 countries, 32 countries a lot! You've probably got many stories, but have you also experienced situations where like you said, you sit around a beautiful group of women and, and a community and you got to share the stories and talk about disability and try and have everyone open and everyone embracing, have you experienced times where it's been a lot more challenging than that, that there hasn't been that openness?
Bronwyn Leeks 26:02
My favourite place to travel is anywhere in Asia. I think culturally, you know, the Asian population is so family oriented and, you know, so loving and beautiful and engaging and accepting. As an Australian travelling to those countries they are, maybe it's a bit of a different story within their own sort of culture, I'm sure it is a different story. I have one memory of when we're in Cambodia, and I was sitting on the beach, and the kids were having a little bit of a swim and a lady came up to me and she had tears in her eyes. Through broken English, she was explaining that she also had a son at home that was in the same situation. Even though there was a language barrier, we could communicate with a lot of hand gestures. By the end of it, we were both crying, and she couldn't believe that a brain injury could happen in the Western world, in Australia, in the hospitals. Her child's life was very different to what Cooper was able to experience. People are always thanking us for bringing Cooper to different countries and exposing him and exposing them to disability as well. For them to be able to see Coops accessing things that gives them hope that you know, they can also do the same with their children.
Melissa Gough 27:21
What a beautiful moment that you got to share. I find that as well, like my journey has only been nearly 18 months. But there's so many unexpected and beautiful moments that can happen with strangers, where you just resonate and connect over a shared experience.
Bronwyn Leeks 27:37
It's an experience that you don't want other people to have had to have gone through. But equally, it's exciting to find someone that has gone through the same thing because there's not many people that can understand the birth trauma and that sort of thing. So it's very nice to have someone that has an amount of empathy about that situation as well.
Melissa Gough 27:56
So you've got Cooper, and you've got Pepper, and number three comes along.
Bronwyn Leeks 28:03
That's Woody! So Woody's now just turned 11. He is an awesome brother to Coops. He is the sort of kid that, you know, says it how it is and doesn't give Coops any special treatment. So Cooper often jokes about the only place that he's bullied is at home by Woody, because no one else bullies him out in society! But yeah, Woody has just really brought us all, all together really and just completed us as a family. Even though it was crazy busy when the three were younger kids, it's been a really, really good balance. Peps was always really nurturing and caring of Coops, and Woody wasn't. So it gave Cooper really good insight to how society can be really nurturing, but equally can be quite tough. He was having some really good life lessons at home before he was having them out, out in society.
Melissa Gough 28:55
And as more time has gone on, what's their sort of understanding and perception of cerebral palsy now and what type of language are they using? What sort of awareness as well? Are they sort of paying forward in their life?
Bronwyn Leeks 29:07
I think with the kids, you know, disability isn't scary to them. It's normal to them, it's just part of who their brother is. In having Cooper as a brother, they've then been exposed to lots of difference and diversity anyway. We have lots of books at home, we watch different movies with different representations and we talk a lot about disability inclusion just as a normal part of our life. All the circles we move in are really supportive of people with a disability. So to them, it's just normal. I think they both in different ways have sort of taken it upon themselves to educate others. You know, they'll often come home from school and say, 'oh, you know, Mum, we heard someone say, you know, a derogatory word about someone with a disability. It's just a normal part of life for them. Equally, parenting, it's very challenging because you've got to balance the needs of three children, and obviously Cooper's needs or physical needs are a lot higher than the others now, and it's a constant juggle.
Melissa Gough 30:13
One thing that's really wonderful is like you say Cooper's siblings are almost like ambassadors for creating awareness as well. It's great that they're not afraid to challenge society's thoughts or challenge the conversations that are happening in their external world. I think that's really admirable.
Bronwyn Leeks 30:28
Well, that's right. They, you know, they often joke about it, but it's really great that their sibling has a disability because when we go to the airport, we get to be put at the front of the queue and get to be the first people on the plane and that sort of thing! But they equally do notice, people looking at Cooper and staring and things like that. I notice when I watch them interact with other people with a disability it's not a big deal. Pepper might come home from school and say that she saw some children with Downs Syndrome on the train and all the other kids were looking at them. But Peppe just says 'hi', because she knows that they're people first. It's just that and then she's educating her friends. They'll come over to our house and they'll see Coops and they can, ask Coops questions and engage with Coops and then it's that flow on effects that it's not such a big deal for them.
Melissa Gough 31:23
Can you also talk us through, have you all travelled together as a family? As mentioned, 32 countries have been conquered by wheelchair access. How's it been travelling all together as a family all three of you. What's the process in trying to organise that, you know, suitcases, plane, getting to the airport with everything that you're dealing with?
Bronwyn Leeks 31:46
That's my favourite part, is planning and the flights and accommodation, stuff like that. Our biggest trip we had was when Coop was in grade six, Pepper was in grade three, and Woody was in prep. Andrew had a long service leave from work for three months, so we decided to take the kids out of school for three months, and to travel around Asia, just in our backpacks. So we only had to carry on luggage, seven kilos, each in a backpack for three months. We travelled through China, Mongolia, Japan, South Korea, Borneo, Taiwan, Malaysia, I think that's it, I probably missed somewhere there! I guess that the places we go through, they're not necessarily wheelchair accessible. It's, we just make it happen. We just, I don't know, there's some sort of weird adrenaline rush that happens.
Melissa Gough 32:36
It sounds like that you guys are off the beaten track type travellers? Can you give us a scenario about how you were faced with a situation right in front of you and what you had to do to accommodate it?
Bronwyn Leeks 32:46
I always think of it like, when we travelled to India, and India is not wheelchair accessible. I think we sort of purposely go to these places that aren't to kind of prove to myself that we can do anything, and that this, you know, as far as Cooper's disability goes, it's not going to stop us. So, you know, we travelled across Rajasthan, the northern state in India, with trains and everything. Obviously, it's like, there's massive crowds of people and you just sort of shoving each other and trying to get on a train, and I don't even know how we did it. I think Andrew was carrying the wheelchair, you know, in one hand, and I might have been sort of holding Coops and then hoping the other kids aren't going to, you know, get lost or whatever. We work really, really well as a team under pressure. There's nothing more exciting than that really big adrenaline rush of like, are we gonna, we're gonna die today? Or are we.....
Bronwyn Leeks 32:47
We're going to conquer the day and we're going to conquer everything!!
Bronwyn Leeks 33:09
Are we gonna survive this day! Andrew and I just seem to work so well together, when we're under extreme states of stress! I just ran onto this train, and you're not even thinking straight, just making sure you've got the three kids in the wheelchair and the passports that's all you really need. Then we sort of all sit down and collapse and it's like the best feeling and we're all high fiving each other and we're so excited that we survived another day. So we're not the type to sort of sit around a resort and relax and enjoy ourselves. We like to be traumatised when we travel! I think that makes you just feel alive!
Melissa Gough 34:16
I can understand that. I totally understand that. So Coop is now 17, Pepper is 14 and Woody is 11. How is life going for you these days? How is everything going that work life balance, still attending Cooper's needs? He's also becoming an adult. How is everything going?
Bronwyn Leeks 34:38
Yeah, I was speaking to the kids, the other day. Coops and I were driving down to Phillip Island and we're talking about just the changes of parenting like young ones and then parenting teenagers. I love the ages that they are now. I really enjoy it, like their proper people. You can talk to them and they have you know, you have really good conversations with them. The three of them are quite sort of highly opinionated about things. I think now Cooper's really taken a lot more charge and like his direction of where he wants to go. So, in a way, even though I'm still sort of overseeing a lot of things, he's able to direct his life and things like with NDIS funding coming through and things like that. He can now make the decisions to employ support workers to support him in what he wants to do Because I'm working a couple of days a week, Andrews working full time, the other kids have their activities that they need to be doing. So it's sort of trying to balance out everyone's needs. It's a really good thing that Cooper's now able to engage support workers and have someone that supports him. To access the gym or to, you know, go out for lunch, or to go to TAFE to study music production. It's, it's working, you know, touch wood, it's all working really well at the moment!
Melissa Gough 35:56
That's good to hear! As you mentioned, in music production, Cooper is actually a phenomenal DJ! He will also probably agree to that, too. You can actually find him on Instagram page @djcoopersmith. But his musical ear, and his rhythm is quite phenomenal. And he's getting booked for DJ gigs. It's brilliant!
Bronwyn Leeks 36:17
He is! He's got two gigs this week, actually, that he has been booked for. In December, I think the first two weeks of December, he's got five gigs. So he's booking up heavily at the moment. He's just done his first corporate gig in the city, which he absolutely loved. He's actually an amazing DJ. He's super social and engaging and people love supporting him not only because he has a disability, but mainly because he's an awesome DJ! It's really good that he's found what he wants to do and what he's passionate about. He's very goal oriented, and he never gives up, he is extremely persistent.
Melissa Gough 36:57
It is brilliant to hear that he's getting booked out all the time, he's going to need a secretary to help support his business.
Bronwyn Leeks 37:05
Well, at the moment, that's me, and I'm doing it free of charge! So he's got no overheads maki! He’s making more money than I do! Yeah he's, he's doing really, really well, and I never would have imagined that this is what he would be doing now. You never know!
Melissa Gough 37:20
How did he get into the music? Where did it all come from?
Bronwyn Leeks 37:23
He's always loved music. He had a dream that he was a world famous DJ, and he woke up and he's like this is going to happen! Cooper's got some magical thing that he does, in that he'll manifest something, anything he says, he will manifest it, and it will come true. So he's very spiritual in that way. He has an idea and he says it out loud, and then, you know, the next day someone contacts me about something, and it happens. So I still haven't quite worked out how he does it. But I think it's quite magical.
Melissa Gough 37:54
It does. It sounds very magical and beautiful. I'm also going to ask, I mean, you said earlier that you sort of hit the ground running and there were lots of different emotions, through all this journey, through all of this. You said, there are times you haven't really given yourself the chance to sort of grieve or digest. It sounds like you've accepted everything, because there was no other way. But have you accepted everything about what you've gone through and allowed yourself, the time and the space to go, 'holy shit, I really went through all of this!'
Bronwyn Leeks 38:34
Yeah, I hadn't, until about three years ago. I was having a lot of physical symptoms about three years ago, and I thought I was dying. I just thought, you know, something was wrong with me. I went to the doctor and I said, 'look, you know, I think I'm going through menopause. I'm pretty sure that's what it is. My jaw, my teeth, everything was so sore. I said, I think I've got like jaw cancer or trying to come up with some excuse of why I was really feeling not myself. Then I sort of had a chat with a GP and he was lovely. He is my regular sort of GP. So then he said, ‘okay, we'll do some bloods and just check. He knew exactly what was going on with me, but he wanted me to do all the clinical stuff first. I went into the nurse to have those bloods and she just looked at me and she said, 'are you okay.' As soon as you get asked that question, you okay....I just completely broke down and was like, hysterically crying. I don't know, I think I had bottled everything up for like 16 years ! Then for the next two weeks, I just cried every day and had a big mental breakdown. My sleep was all off and I was all over the shop and didn't know who I was or where I was at. It was like my whole brain had exploded essentially and who I was wasn't there anymore. Very strange. It was a mental breakdown as far as I'm concerned and a physical breakdown. I then went and accessed some medicine and some therapy, and discussed all these things. It was all the trauma of Cooper's birth and everything like that that had come out. I had a lot of tears and everything and went to a few different healers and this sort of thing. Now I've sort of come out of that stage, and I'm so glad that I did that. As a joke I often say, people need to have a mental breakdown, it's very good for the soul. You know, yeah, that's good for you!
Melissa Gough 40:38
Do you know what kudos to Bronwyn that you allowed yourself to go through! You just totally thought, okay, it sounds like, here it comes, you went with everything that you thought it would be. Then in that moment when someone asked you, a total stranger asked you,' are you okay,' you just totally surrendered and allowed yourself to give yourself time to grieve.
Bronwyn Leeks 40:58
It's totally true. I remember,after that I contacted my sisters and my parents, and all four of them said like, 'thank god, that's happened! It's about time! They've been waiting for all these years for me to lose it essentially. They were really grateful that I surrendered, because I think I'd put on such a stoic, brave kind of personality or whatever, for so long. Yeah, I love it now, like I just, it's made me a different person having that emotional breakdown.
Melissa Gough 41:30
I know you're laughing through this, but I can only imagine what it was like at the time. I mean, I know you've got such a lovely way about how you go about everything. There's so many layers to it. How has it been for Andrew through all of this?
Bronwyn Leeks 41:43
He was quite scared, I think of what was sort of happening to me and he just wants everything to be okay, he wants me to be happy, I guess. It was very hard for him to see me kind of falling apart. Because I think he was so used to me just being in control and taking charge of everything. It's actually been a good way for me to step back a little bit and have other people like Andrew and the kids to actually, you know, do a little bit more, and it's not all on me, like the world's not going to fall apart, if I don't do everything will be in control of everything.
Bronwyn Leeks 41:43
You've probably spent 16 years being in absolute survival mode.
Bronwyn Leeks 42:18
Yeah, I've just been in fight or flight for 16 years. I didn't know, and then when this happened, I thought 'oh, my goodness, like is this how this is how you're supposed to feel like.' I was always feeling like I just had so much adrenaline running through me all the time that I just got used to it, and I thought that was normal. Now that I don't have that, it's been a real eye opener to how you're sort of supposed to feel.
Melissa Gough 42:40
So you have been like you say stoic and strong and you spent your whole time through motherhood, going through the journey of Cooper and then Pepper and then Woody, what is something that Bronwyn wants for herself, now going forward? Now that you say they're at a great age, they're getting a little bit older? What is something that's on Bronwyn's bucket list that she wants for herself?
Bronwyn Leeks 43:02
I guess I just want to explore and I want to connect with people, I think. The kids always joke around that I talked to anyone now, but I do, and I love just that human connection. You know, just even locally and interstate and internationally, speaking to new people and learning about their life. I really appreciate it when people are really open and honest and raw. I get a lot out of being able to discuss some really deep issues with people that I might have just met, you know, in five minutes. I often find that if I'm really open and vulnerable, then they're more likely to be like that as well. So I really liked that side of it.
Melissa Gough 43:09
I agree with you. I'm the same, I can do small chat, I can do a little bit of that. But I like a whole lot of lovely, deep and meaningful and purposeful conversations with all different walks of life that totally fuels my soul. I totally resonate with what you're saying there. Thank you for sharing, and I'm glad to hear that Andrew is gonna go along with you. So Bronwyn, I'm going to finish up this interview by asking you the same question that I asked everybody else that I interview. The name of this podcast is called The Brain Game Changer: where heartfelt stories, awareness and education can change the game. You've given us so many different tools and so many different scenarios that you've shared with us today. But if there's that final piece of information, that golden nugget that you want our listeners to take away with them today, what would it be?
Bronwyn Leeks 44:22
I think for me, it's like from a medical point of view, not believing like the worst case scenarios that doctors give to you. There's always, there's always hope and there's always community and connection to really support people to be the best that they can be.
Melissa Gough 44:40
It's really great advice. Thank you so much, Bronwyn.
Bronwyn Leeks 44:42
Your Welcome.
Melissa Gough 44:44
Thank you for listening to this episode, and I hope you found the show really valuable. If you'd like to learn more about the podcast, our guests and the topics we discuss, please head over to our Instagram page @thebraingamechanger. Make sure to subscribe and tick those five stars so you never miss an episode. In the meantime, continue embracing those game changing moments. Have a great week and see you again soon. Take care.
