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Finding sports that spark joy

Positive sports experiences at an early age have important health and social benefits. Families of survivors of childhood stroke often report being unable to find inclusive activities and sporting organisations in their communities.

In this episode of the Childhood Stroke Podcast series, we speak to a parent and two professionals working to engage young children in sports after childhood stroke.

Guests:

  • Tony Peacock, a parent to a child who had a stroke and member of Stroke Foundation's Lived Experience Advisory Group.
  • Louise Daniels, a Senior Physiotherapist who is passionate about supporting children with a disability to participate in sporting activities.
  • Dr Olivia Lee, a paediatric rehabilitation consultant who supports families and children to become involved in sports after childhood stroke.

Helpful links:

Transcript

Simone: Stroke Foundation respectfully acknowledges the traditional owners and custodians of Country throughout Australia and acknowledge their continuing connection to land, water, sky and community. We extend our respect to the peoples, cultures and elders past, present and emerging, for they hold the memories, culture and hope of their peoples. 

Welcome to the Childhood Stroke Podcast. The Childhood Stroke Podcast is for survivors of childhood stroke and their families. We aim to build knowledge, skills and confidence in navigating services and support. This podcast is also an opportunity for families to share their stories and messages of hope. 

The advice given in this podcast is general in nature. Discuss your situation and needs with your health care professionals. This series is presented by Australia's Stroke Foundation and funded by the Barr Family Foundation. I'm your host, Simone. 

Simone: Welcome to the Childhood Stroke podcast series. In this episode, we're talking about sports inclusion after childhood stroke. Positive sports experiences at an early age have important health and social benefits, but families often report being unable to find inclusive activities and sporting organisations in their communities. In this episode, we'll be talking to a parent and two health professionals about engaging young children in sport after a stroke and how to overcome some of the barriers many families face.

So today, let's meet Tony Peacock. Tony is a father to Georgia and Lachlan and husband of Kim. Tony has worked in Allied Health and Corporate Med Tech for the past 25 years and is a parent committee member on several advisory boards including Stroke Foundation’s Childhood Stroke Lived Experience Advisory Group.

We've also got Louise Daniels joining us, who is a Senior Physiotherapist at Kids Plus Foundation. She has worked in paediatrics, predominantly in the community, for more than 15 years. Louise's passion is supporting children with a disability to participate in sporting activities within their local environments.

Doctor Olivia Lee is a paediatric rehabilitation consultant at Victorian Paediatric Rehabilitation Service. She specialises in treating kids with acquired and congenital diseases, including acquired brain injury, spinal cord injury and cerebral palsy. Additionally, Doctor Lee partners with organisations like Disability Sport and Recreation and the Paralympic Lead in Victoria to support families and children being involved in sports and at school and in the community, whether it's for fun, fitness, socialisation or competitions.

So welcome Tony, Louise and Doctor Lee. It's so fantastic to have you on this podcast episode. I feel like I'm in very good company. So welcome.

Dr Olivia Lee: Thank you so much.

Louise: Thank you.

Tony: Thanks Simone.

Simone: And Tony, I'm going to start with you and your daughter Georgia had a stroke when she was just eleven months old. Are you able to share a bit about your family stroke story?

Tony: Thanks Simone. Many of our listeners may already be familiar with George's story as it's one of the feature stories in Our Family's Stroke Journey resource. But for those who are not familiar, so at 11 months, Georgia and I were sitting in our backyard in Sydney and just playing and all sudden Georgia screamed and started hitting the left side of her head. So picked her up, took her back inside to where mum was and within a couple of minutes she had lost consciousness. So we rushed to our local hospital where the team, by doing a CT scan identified that she'd had a bleed on the brain.

Got us to Sydney Children's Hospital at Randwick and Georgia within 24 hours was operated on, where they found two aneurysms, one which had burst and one which had not. So both of those were clipped. We knew one of the risks post aneurysm bleed was that Georgia could have vasospasms and have a potential stroke. And so while Georgia was in ICU at the hospital, Georgia had a stroke within two weeks of that surgery. So once we kind of got through saving Georgia and the team at the hospital, getting her to a point where we could start rehabilitation as you kind of alluded at the start, my background was in Orthoptics. And Orthoptics is an allied health professional that works with ophthalmologists and predominantly it's for kids with squints so turned eyes. So that some part of what both Kim and I, who were orthopedists, originally understood, neuroplasticity and the importance that, OK, this area of Georgia's brain has been affected, we need to rewire it. And while it's never a great time for a stroke to happen, but when you have a child that's that young. We saw it as a good time because her brain hadn't learned most of the activities. She had only just learned, started to walk. She had only said her first couple of words.

So a lot of areas that we knew that we could really get in there and help rewire that brain moving forward. So we got heavily involved with the team there with physio, OT, speech as most of our listeners who are on this journey will have experienced. So when we got out into the community again we were within that same group. So we went out to community, had our physio, speech and OT and at that stage It was all about getting Georgia active, get her moving so that her brain had that capacity to be able to reset and rewire. Eventually we moved back down to Victoria to be closer to family because Lachlan our son came along two years later and so we kind of needed that additional support with running to therapies and a new baby. So that's where we I came in contact initially with

Doctor Lee as one of her consultants that supported Georgia. And as we really worked along through Georgia's journey, Doctor Lee started talking to us about finding Georgia's passion. What? What was she passionate about? Was it dancing? Was it singing? Was it running? Was it swimming? What? What are those activities that Georgia is passionate would find passion in? But also from a family's perspective, what are the things that we like doing that we would, you know, hopefully our kids would be able to join into it. And then Louise is also connected through with Georgia in that through the therapy organisation that we use Kids Plus in Geelong where Louise is. So we do our physio OT and speech through there. We work collectively as a team then to build on that. And then as Georgia got older, we started finding the areas that yeah, I want to do this, I wanna try this. And then it was about our journey. How do we go about getting Georgia involved in those activities when in a smaller community there might only be one or two tennis clubs. So how do we get Georgia involved in that when we got OK, her right side of the body is weak. She has no strength. How do we do that? So that's kind of where Georgia is now.

Simone: That's fantastic Tony. Thank you for sharing. And Louise and Doctor Lee, you've been with Georgia how long now across that sort of period of recovery and getting back into activities and those passions that she's now discovering.

Louise: I think I've probably been working with Georgia for two or three years. Would it be Tony or is it a bit longer? Yeah, maybe three years.

Dr Olivia Lee: I want to say I've been working a bit longer. Yes, probably. Would I say 2018 there about 2019. So four or five years. Yeah, it's been a long time, isn't it? And at different time points at different things that we talk about. Certainly when Georgia was young it was more about learning to do basic things. What a four-year-old getting back to prep school and how to get to primary school, what is required. But then the focus shifts very quickly into who Georgia is as a child, as a person. She's a little individual growing up and it was really important to find, find out who she wants to be and putting rehab in context. I love rehab because it's like the art of medicine. You're using all this science knowledge to apply it to a child who's growing and thriving.

Simone: Fantastic. And Tony, you touched on this a little bit around sort of the process of exploring different sports in the local community. Could you share a little bit more around what that looked like for you and what you tried or what perhaps George sort of pointed to that she wanted to try out what worked, what didn't work. Were there any perhaps challenges or barriers that you'd be happy to share?

Tony: So, so some of the sports that Georgia has looked at was tennis and golf. So in more recent years. So tennis, we're probably done for about two years. So starting off in tennis, so most of the coaches for tennis, for kids who are, you know, 5-6 year olds, they're generally 15-16 year olds. Kids from the local Tennis Club who come and teach the little kids, so their understanding of Georgia, stroke and some of what they're expecting a child to do and what Georgia was capable of was sometimes a challenge trying to get them to understand. So their concept of stroke was hard. So it was a conversation, but I think for us we came across one coach at the same club who had was an older guy in his mid 20s who had just come off playing the pro circuit in Australia. So he just commented to us, Ah, it's really, I find it really interesting with Georgia. She's really good from the left side but seems really weak on the right side. So her backhand is really hard and there's no power in it. And because this was our first session we said Oh well, she'd had a stroke and the right side is affected and he goes, ah well why is everybody been forcing Georgia to do double handed backhand? Why doesn't she just do single handed backhand with the left hand, change to that bang over the net, bang over the net, bang over the net and he goes done. And so it was something so simple as just that identification but also understanding that process from the coaches perspective as well how they may need to adapt their teaching style to a particular child. So it's kind of like customising their coaching for Georgia and so that made it a lot more enjoyable for Georgia because now the ball's going over the net. So he made those adjustments and Georgia quickly progressed.

So then when we stepped over into Georgia, our son wanted to do golf. And then Georgia goes, well, I wanna do golf. OK, Right, let's do golf now. There's probably more coming from my perspective. It was probably my limitations. I was concerned, right. Georgia doesn't have the full range of motion. How's she going to be able to swing or go from the left hand side, swing all the way back to swing through? So we spoke to the coach from day one, explain Georgia’s background and some of our concerns and he went, OK, we can make these modifications. But then when we went back to our physiotherapist and our OT, we talked to them about it as well and said this is where Georgia’s interested at the moment. So we need to modify her grip for the Golf Club. Can we work on that grip? This is the range of motion we need to have for Georgia to try and achieve around here. How can we do some exercise to build an adjust that motion? So with golf, we then started linking in our therapies to make it practical for that golf experience. So for Georgia, then she started to hit the ball and she started to start getting the distance, which again it's that positive reinforcement process, isn't it? Once you can start doing something, you see the return that it's working. That built up her confidence.

And probably the third one I'll talk about for Georgia was last year. So we live in Geelong, so we're near the Surf Coast. So beach during summer is a big part of our lifestyle down here. Getting down there now, Georgia will not put her foot into the ocean. She screams when we get near the waves. And it really came from this concern as earlier on that moving sand, that instability in that environment for Georgia and her confidence to be able to navigate in that space. So last year we decided we're going to put we really want Georgia to do the Nippers programme because our son wanted to do Nippers and we said it's really important Georgia does Nippers. So we approached the local surf club and we found out that they had a tailored programme for children who needed additional support within that Nippers programme. So and that was called Starfish Nippers and it ran in alignment with the age group Nippers. So she was still there interacting with her peers but was just in a separate age group which was the starfish group and that was one on one or two on one support. So we did a two week intensive over that period. And they really worked on building Georga's confidence. So this is a child who wouldn't step into the water and by the second week was putting a head under the waves out the back, climbing up onto a surfboard and then paddling up and down the beach on a surfboard independently. And we had to say to Georgia, if you want to do this, you have to realise you have to use both sides of the body. If you just use your left side, Georgia, you're just going to go in circles. And so she worked out right and the team were there, standing next to her, supporting her along that journey. So we got Nippers coming up again, our intensive again and it was Georgia. I wanna do Nippers again. So she wants to get back out and is now confident to step out into the water. So there's some of the activities that we've done that we're seeing some really good improvement with Georgia.

Louise: That Starfish programme is awesome, isn't it, Tony?

Tony: It's brilliant.

Louise: Yeah so the Starfish programme is has been running in different beaches. I think it was started in Anglesea in Victoria, but it was actually Jan Juc that reached out to Kids Plus to say oh we wanna do this programme that we're not but we're not sure. So Kids Plus actually started to run an intensive programme in conjunction with Jan Juc and then so we still do that for our kids who wheelchair users who need a lot of support and so but then a lot of kids from our programme like go on to the Starfish programme and they're yeah, it's just really supportive and it's great because they use a lot of the teenagers and I think that's just a really nice mix. Like, it's not always adults working with them, but to buddy up with some teenagers I think is really good for the younger kids as well. They're awesome.

Simone: Sounds like such a positive experience for Georgia as well. Tony, That's definitely impacted on her desire to go back again, is that?

Tony: Yeah, that's correct.

Simone: And Louise, you said that it's you. You believe it started sort of in Victoria and there's now a number of different beaches that run the programme. Do you know if it's something that's run nationally at different beaches? Is it something that's been adopted by other states?

Louise: I think so. Starfish Nippers is the one in Victoria, but there are different ones in Queensland as well and I presume like other States and they do similar idea of trying to link in with the community. And I think like yeah, Tony's description of kind of sports was so good and it highlights, you know, Tony and Kim are great at like exploring different things and driving different things and coming back to their therapist. And I think having like their therapist role, they highlighted really well of like improving those skills to be able to then go out and do things in the community and working in conjunction with the community, their organisation as well to be able to have the kids participate in, in the activity of their choice.

Simone: Yeah, I agree. I think that came through really strong too Louise. Tony's really shown and demonstrated just how important it is, I think to be working collaboratively as a team. But yeah, that those links back into community and you know, I think it sounds to me, Tony, like you're educating and upskilling a lot of different coaches as well locally.

Tony: Yeah, and they really appreciate it. I think that's probably the key learning we've taken from it. It's you might not have a programme like that specifically for kids who need additional support. You might not have that as an option where you live, but you know your, your passion within your family is soccer, for example, and you have your local soccer club then. And if your child wants to be involved in that, it's just talking to that club about, OK, our child, you know, say Georgia really wants to get involved in here. How can we participate? Is there an avenue for her to be able to participate? What do, What does that look like? And I think it's really stepping out to have those conversations beforehand, just exploring if you're already involved within that sport, if it's an area that you don't know or a sport that you're not familiar with but you think it would be good to look at. Another really great way is talking with your therapist. So talk with your physio about. So what sports do you think would be really suitable for our child to get involved in? So, and what are some of those areas that you think that would really thrive with. And what is going to be some of the challenges that we might need to be able to, we need to talk to those coaches or those organisations about so that we can get that involvement. And most, most we've always found are really open to having that discussion and really identifying and trying to work with you to make that that child's ability to be able to participate.

Simone: Some fantastic I think advice, practical advice around how to get your child into activities of their choice. Doctor Lee, you're a paediatric rehabilitation consultant and at Stroke Foundation we do have callers through to our StrokeLine service that may be asking about you know, getting their child into sports and activities. And we encourage families to discuss their specific situation with their child's medical team and also rehabilitation team. But just from a medical perspective, is there any General Medical advice around participating in sport after childhood stroke that people should be aware of?

Dr Olivia Lee: Thank you. I do get this question all the time from families and it's such a fun and important conversation to have. First of all we want to make sure that the family and the child feel safe. We want to make sure that you have spoken to your neurologist and you have a medical clearance from the neurology team and the neurology plan pertaining to post-stroke related complications and prevention. And then my role as a rehab consultant once I know you have that plan, it's quite straightforward. We want to make sure we want to start the journey with you to get you stronger to the best possible state. And then moving forward participation in sports is such a vital part in integrating children back to their homes, to their communities and finding a new way to participate. So in Australia, Australia is the centre for sports, sports is culture. I come from a different background so you know for me this is exciting. Sports is where families gather and have so much fun and have so much hope, right? And so that's no different for our children who've just experienced stroke and their journey towards going back to school, back to finding their community and their tribe. And sports touches on these experiences of what's important in enriching a child's experience. In sports, it almost covers these six aspects that are important in rehab, which, you've heard of this before - fun, fitness function, family, friends and having a hope for the future. Sports covers all these aspects and it's so important to have these parts in moving forward and looking forward towards the future.

Simone: I love those six aspects that you share, they're fantastic. And is there anything that that comes up more commonly that could be something that restricts people from engaging children from engaging in sport? Is there anything that you tend to find that there might be a, a restriction or anything that someone might need to be mindful of that may come from their neurologist that's worth discussing?

Dr Olivia Lee: It's important that families spend time understanding what's been done and speak to the neurologist. Once I understand that they have spoken and understand their condition with the Neurologist, we focus mainly on the rehabilitation aspects. Really from in terms of knowing how to engage in sports from a rehab point of view, I just want to emphasise 3 points. A lot of the things Tony has already illustrated so beautifully, but I just want to summarise that firstly, with the right support, all children can participate. And this includes even children who use wheelchairs and have difficulties using their hands and have other impairments such as vision, hearing, spinal cords. Today we're talking about stroke, but we, we really want to emphasise that it is seeking the right assistance that allows children to participate. So the point is this, a child doesn't need to be independent in every aspect of an activity to participate, but with the right support or children, can learn a new skill, find those obstacles, overcome it with lots of help and practise, and join in. Really.

So I, you know, if I I may say that secondly, again Tony has also touched on this is about finding people who recognise and celebrate the child's strengths and ability. It's looking into what's important to help grow a child and to make sure that the child is not sitting there and attending a sport. Its about trying to get the child involved and engaged. And it might take changing the physical environment and providing equipments that are relevant and talking to the therapist in building those skills to set them up for success. And as Tony said, there's nothing better than when you see a spark in a joy in your child's eyes when they hit the right sport and they want to do it, you know, suddenly it's not boring. They're not just sitting there and all the skills that they learn in therapy they can use right? And in trying new sports.

We also find that commonly in children with disability or having had a major illness in their life, they may not get as much exposure compared to our typically developing children. And when you don't expose a child, they don't have the same life experience. And it's important to remember that children are thriving and they crave for new experiences. After stroke, recovery does take time getting back to a new norm. Most children are very deconditioned. Families get very busy trying to transition back into home, getting back to all their family, extended family members, getting back to school. So it does get busy. And it's too easy sometimes to slide into a sedentary lifestyle. And also with therapy, some kids do get bored. You and I even when we exercise in the gym, you know there's only so many bicep curls that you can do before you get bored. And I tell this to patients all the time. We have to find a new context to use those skills. Sports is an exciting context. It harnesses this desire to want to experiment and learn new skills and to get stronger. So kick a ball like Tony says, find out what your child likes, kick a ball, ride a bike, then join a team. You know, finding a community that can help your child grow with your friends, even when if you're walking, then the next step is learning to run, then learning to run well. And if you're in a wheelchair, there's no restrictions. It's about learning how to use this wheelchair better, from a flat surface to a more complicated surface. Suddenly you get your child wanting to, to build on their core strength, to do some spins, to do some balance work.

You'll be surprised that all children, even with quite severe levels of impairment, they will tell you that they enjoy sports and they want to participate. They don't want to just look into their limitations. They want to make use of what they have and what they can do. But even when they tell you that only a handful of families and children are actively involved and sometimes when you take the history, you know, it boils down to not knowing how and not knowing where or what kind of sports are out there for a certain disability or worried about the finance who's going to fund this equipment and not being taught that they can. So getting the right advice is absolutely is probably the start of many things. Knowing where to get funding, knowing which therapist can help you, and speaking matching your coaches like what? Tony said Getting your coaches to speak to your therapist and getting your therapist will be out there watching, watching your child perform and breaking down those skills.

I find that in the early part of rehab we and it's part of, you know, it's important in medicine that we try to restore what is lost. We focus a lot of our energy and families spend a lot of energy looking at the body structure and function and that's important. But with a lot of practise, then the question becomes what for and why? And participation in life meaningful activities is like the highest calling. Then you, you, you ask your child what they want to do. What does the family want to do? What is that context that provides fun, fitness. You know, get the family excited together and then you look backwards. And then suddenly all the practising of skills become more meaningful and exciting, not just for the child, but for everyone.

So if you go to quite severe children who requires a power wheelchair, I've met athletes and I never knew about balloon soccer and essentially on a power wheelchair, the balloon soccer, they've adapted the soccer balls to be lightweight. And I've met very, very inspiring athletes who are on breathing ventilatory support. And all they need is 1 mode of control on their power wheelchair to move and play the game. And suddenly you see the child when they go for tryout days, they are learning to spin this wheelchair. You're not having, you're not having to control teach them how to use this power wheelchair safely because they're in a hall and it's safe and they're spinning around and they're speeding. And I have tried sitting in one of these power wheelchair before and it really gets your heart rate up. So exciting and you know the challenge is not to be thrown out of this wheelchair. So even in hockey, on a power wheelchair there's a guard. So you modify this equipment, you put this guard in front of the wheelchair and then the game is on. So with this new context, fun and excitement, all the families are finding new ways. And we know sports has got so many benefits, not just for the family, more so for our children going forward.

We want to ensure that they have foundations to move on as they transition. You know, we start them young to make sure that they understand that they can participate. And as they grow older and become adults, they know they have had the foundation of how to become fit adults despite their disability. And there's clubs and there's support groups out there. And that's important in preventing us sedentary lifestyle, reducing the risk of obesity, you know, build cardiovascular fitness growth, healthy bones and muscles and ligaments and tendons, improve their strength and coordination. And with all that energy spent on something that they love, their sleep is improved, their pain may not be as great. And all these happy hormones that come about with sports, they have elevated mood. They can curb anxiety and depression. And more importantly, children just become so much more confident. They learn to make friends, network, that sense of achievement when they can do something, that sense of gaining self-competency, it's important. And more so when they found their tribe for the families and their friends. This is their community, and sports is in a way finding that community and their tribe to grow.

Simone: Wow so much in in everything you've just shared. Doctor Lee I'm like wow just taking it all in. There was so many I think nuggets of you know just fantastic information and advice and insight. But Louise and Tony I wanna see if you've got anything to share back from what Doctor Lee is just shared with us.

Louise: Yeah fabulous. Like so many things I was my brain was like, I need to talk about this, this and this. I think one of the and it links back into some of the things that Tony said as well about how like your therapist can help you absolutely like therapy to build the skills and get that skill acquisition and talk about and the body structure and function and things like that. But you don't have to make sure you've got all the skills before you participate. You can absolutely start at the participation level. Tony highlighted it. Georgia wanted to get involved in golf. And so then that led to let's how can her therapist improve, you know her range of movement and her holding of the club. Absolutely. Participation can be where it starts and then the therapist can help improve these skills that you need for the participation. And just the participation itself improves all those things that Doctor Lee talked about, you know, or their cardiovascular health, their fitness. But also then their range of movement and that the improvement in skills they get from participation in sport will then have flower over effects to all the other schools that they can do in their everyday life. So I think it's important to think like, oh, I can't, shouldn't think. I can't do this. So I can't participate in the sport chat to your therapist, see what sports might be suitable. What kids in your area have tried different sports. You know now that we know that Georgia, the tennis went, worked well, the golf worked well, then we build that knowledge and pass that on to other kids that we work with. This is a good spot to try for tennis. Try this for golf. And so, you know, really, and your therapist, if you're nervous, if you're not sure how to have that chat with the coach that Tony talked about, take your therapist along. It's absolutely a valuable therapy session to actually just attend the sporting event with you. You know, have someone to hold your hand to have that conversation with the coach about how things might work. Maybe the first session is just going along and watching and seeing what they do and then thinking about how you would like to participate. So yeah, the therapist can absolutely help with the skills, but certainly think about starting with the participation is really important.

Tony: Yeah, totally agree. Louise, think that is the vital part. It's just taking that first step, and I think another thing that your organisation that Kids Plus does really well is apart from just the individual therapy, you do run some therapy groups and one of them is like George is at the moment is doing this ball sports where you've introduced netball, basketballs, soccer. So introducing in that safe environment, those ball skills with the therapists and they take them through, this is how you do it. This is the steps. And then from that if you find that, you know, Georgia goes, yeah, I don't like basketball. Yeah, I don't like basketball. OK, righto, that's that might be an avenue you don't explore, but she goes, I want to try netball because all my friends at school are doing netball, so I would like to try netball. OK, So you've been exposed. You've gone through what how to do it and they've seen it in that safe environment. Now as a family, we can go out and explore those areas. So I think that's another really great way of for families where you're not sure really link in with your therapy group, link in with your rehab team through the hospitals to talk about or OK, we're at this stage now as Doctor Lee you said you know you're medically fit now you're in a place now you can start going exploring these areas. So what does that look like?

But another one I wanted to try to touch on was also was around for kids, young kids who are in school. So, and this is where a lot of kids first, get their exposure to a lot of sports. So it's in those recess. The kids are out on the playground. They're playing on the monkey bars. Or they're out on the football oval, kicking the footy, playing soccer, doing basketball, doing netball. And sometimes you can really find, as we did, we found that Georgia was becoming isolated because she couldn't. She didn't feel confident to be able to go and participate with her peers at school so her friends, because they were running around and throwing the ball and it was just too much. It was for Georgia, years from a sensory, from a safe place. She felt I'm going to get knocked here, I can't compete and then no one's throwing me the ball and all those type of things. So it's understanding from that also. How do you build on that with your therapist. Or, how do you do that as a parent going OK, righto. My child wants to really participate in this. I'm hearing this conversation a lot after school. Pick up the ball, pick up a racket, take your kids out, take him down to the local football oval and teach them how to kick a football, how to kick a soccer ball. That just that back forth, back forth motion. Teach them those ball skills, that hand eye coordination. As a parent, these are some of the things we can do and don't be afraid to step into that space with your child and really. Sometimes you can be the first point of call for getting them involved within an activity once you kind of hear where they really want to go and what they want to participate and do.

Simone: Yeah, I remember Doctor Lee sharing that same thing too Tony like it could just be starting in the backyard at home and it's a real staged approach and in a safe way that can really build confidence and lead to a positive experience.

Dr Olivia Lee: Yeah, I may add that that you know like what Louise mentioned there are many come and try days. There are two organisations that I really love partnering with. One is the Paralympic and that's one in every state. So join into their events, sign up, register and become a member. Certainly in Victoria, our kids, if you tell them that you were referred from VPRS, they will reach out to you, they will invite you. Within our service, just like Louise's service, we also do repeatable holiday programmes where it's just about coming to try a new sport. Because if you come and try, you're more likely to be more confident when you're going to do something at school and joining a new club. There’s nothing more exciting than looking at athletes who are in with that lived experience come and take your child and your children suddenly realise that they can do it too. They’ve seen someone do it and they know they can.

2024 is coming, the Paralympic sport is coming up in Paris. It's very exciting. I always tell the parents, also look at the 22 summer sports that people participate in. It blows your mind. I'm learning about a new sport every day. You know, there's so many things that we don't know that we're learning from each other. If you go down that line and discover your child is very likely to find something that sparks in their eye and want to try and join.

Louise: Yeah, so back to the groups that we run that Tony mentioned. I think like group therapy has a couple of different goals. So like Tony mentioned, it does give kids the opportunity to try different sports. It gives them that kind of a comfortable zone in which to try them out because they're with peers of a similar abilities. They can feel more success and so they can see oh this is something I enjoy. And so we do find that some kids stay at that that group participation with their therapist because they like the little bit more support. We find that some kids like Georgia will then go, Oh yeah, I do really like netball and then we can provide them with support on how to link in with their school or their or community based netball activity. And so there's one way we can do it there. And then particularly some of our wheelchair users, there are some great sports out there like Doctor Lee mentioned, but they're not all in Geelong. So we try to link in with the community where we can, but we do find that some of our seated sports groups, do just continue a couple of terms a year because there's not. Yeah, there is great options like the power soccer, balloon footy, boccia, there's some really good sports you can do, but they're don't always exist in everybody's community. So I think, yeah, sometimes we are trying to, you know, fill a gap that doesn't exist. But wherever, whenever we can, I think it's important to try and link kids in with the community.

Simone: There's some great points, Louise, and as the physio, I think that you've shared as Tony and Doctor Lee about all the amazing, incredible ways that physios can help support children with the disability, explore different sporting options. Is there anything that we've missed though around how physios can really help support children getting back into or getting into new sports?

Louise: One of the things that we were, well Doctor Lee touched on with in terms of like the Paralympics coming up is we talked about it earlier with Georgia that we did do the para classification form for her. So with Para sports, the para classification is the process by which all athletes are grouped based on their impairment or their disability. So the aim of the classification is to minimise the impact of one of a person's disability on their sport performance and kind of create a level playing field. So, Athletics has several different classifications and so those with a stroke, cerebral palsy, or  had an ABI I that fit into the Hypertonia category, which is where Georgia fits in. And so. Yep, that's just anybody that's had their muscles impaired by a brain injury. And then that's further broken down to like based on what body part is affected, whether it's like both arms, legs or whatever. And so then they for athletics, they would then compete against people who had like a similar ability. But it's like every sport has their own classification. So, for soccer, the Paramatildas and the Pararoos, that is a category for people who are more ambulant and have had like a stroke or an ABI. Whereas then there's like power wheel chair, power soccer, There's wheelchair basketball. That's different again to wheelchair rugby based on like your level of impairment and your ability to push a wheelchair. With the athletics, to compete at your school you don't need to be classified. Like you know if you can just enjoy participating with your school and with your peers and just have fun. But if classification is something that interests you, when you're 9 years old, about grade three or four if you do, if you are classified, then you might come 8th in your event at school, but then your PE teacher can put you in the multiclass. It's called multi class because there might be somebody with vision impairment or hearing impairment variety of physical disabilities and then you get to compete against people who also have a disability and you get to represent your school and it regional and district and even go on to state. And same as all the top performing athletes in your school, you get to represent your school which is really nice for kids with a disability to really get recognised that hey I do have a disability but I can be awesome at sport too. And we just recently had a young girl who attends kids plus and she yeah,  was classified. The girl who's the same classification this Georgia, she's a T37 and so she went on to compete in her regional and district events and she's possibly going to go on to do state for shotput and the 100 metre sprint next year. So yeah, she was just really stoked that she got recognised for her school.

Dr Olivia Lee: Yeah that's so wonderful to hear, Louise. First and foremost as a paediatrician we, we talk about anticipating development or development anticipation. So what are the next steps? Like Tony said, when after, right after they learn to walk and then run. We want them to be competent in playing in the playground. But same thing when it comes to when they turn 9 and 10, we know that most schools run competitions. And some children, some of our children, they find that, you know with a disability which is invisible, they might find that they're not good enough and that's not true. And that's why the education starts early when they're five or six, we're saying to parents, let's train them to, you know, break down these skills of learning to run because running, it's like in basketball and in tennis and soccer. Learn to swim, if you're you have more difficulties in running because then you can represent your school later. You don't have to represent, but we're giving seeding these ideas that they can be competitive if they want to. So that they know that they're not competing with their typically developing peers who have no challenges. And actually, helping them recognise that their challenges is not a barrier, is not a let down and that comes with a change, a shift in mindset to say, “hey, hang on, I've got this challenge, I shouldn't be competing with this person with no challenge”. My challenge, when I run, I want to be challenged, I want to race against someone with similar challenges. And suddenly that's what Louise is talking about. You know what classification is, is teaching children that we're trying to find the playing fields. Playing field, where it's fair and sometimes families don't take this on board because they don't want a label. And I can understand that. And it's fine. If your child is doing very well, it's great, but we don't want them to be misrepresented for their weakness. You know, if it's visible, it's sometimes easier. If it's invisible, sometimes it can be quite disheartening for a child. I think that's where we need to talk about these issues with our therapists and just explore ideas, how competitive the child wants to be. And even if we taught them competition. Represent your school is such a badge of honour. If you've got you've had a stroke. Say I've had a stroke. I'm going to represent my school and you and your child may be the only one at school doing that. And suddenly they’re meeting other children from other schools and then other States.

I've had a girl who is exactly like what I illustrated, was a great runner and I was thinking why aren't you running. And she said I'm always losing. So we got her classified and low and behold she met all the right people, right assistance on that day. Richard Coleman, who was a trainer in running and she started within a month. It was the school sports, and she qualified all the way to nationals. And then in high school she got a sports scholarship. So it's a little bit, you know, surprising sometimes, but also not surprising because when you're putting children in the right place and giving them the right education and you've given them the right work.

Same with our power wheelchair athletes. The children, you know, they, they don't know that they can use the chair in a certain way and in a safe environment. I was surprised when I first attended my first power wheelchair sports and then when I brought, when we organised and brought it to our service, the kids, they didn't want to leave the power wheelchair. Suddenly they’re saying there's something for us. We made a video on how to get good in sports and our kids who were quite affected, they said we understand this, we know how sports is important but we want to see sports that we can identify in. Identify in. And it's all an education. I've had to look . Race running, although it's been in Australia for such a long time, it's taken a while to take traction. And sometimes it's all about knowing how to get the equipment, finding the club, inviting the representatives of these sports to come and let the children try.  And we can do it on a, you know a community level, get a few families together, let's try this. It takes being proactive.

Simone: Wow. It's just been such a wonderful episode so far and I'm just realising that a few of the questions and things that I had that I wanted to raise we've probably covered. But I'm going to ask a couple of more questions. So just to clarify the power of clarification, you have to be around that nine year mark. There's no sort of. It's a fairly hard rule?

Louise: So you can do the process sooner so you're ready for when they turn 9. But it is so it might differ in different states but in Victoria first school sports. It's for the competition level. So this is not like absolutely in all the junior activities linking with the PE teachers, if the children are not being included as you would like in their sports and chat to the PE teacher and highlight, they can absolutely do whatever they want and this structure the environment to suit them. And you know maybe it is that they just start a little bit further up the track to get a sense of success. But yes, if they would like to do the competition that Doctor Lee and I have talked about it is from 9 for school Sports Victoria. And so that's when all the schools start the competitions against each other at Districts, then Regionals, then States and Nationals. And so for just districts, and regionals, they only need the provisional classification form which is just a two pager that you're physically you need a medical letter that states your diagnosis and then your physio can complete the form and then you just email it to Athletics Victoria. So I think the form is on the Athletics Australia website and then the student would just be registered into the district and regional events the same as from their PE teacher, the same as the other children that compete in the mainstream events. And so then when they get to state and national levels, they can have a face-to-face classification with like a qualified classifier but at those early stages, absolutely just therapists to complete the forms.

Simone: Thanks so much for clarifying Louise. And those conversations pre classification. So you know maybe your child's a 7-year-old in primary school going into you know mini tabloid or athletics type carnival situation. It's really around that negotiating with the PE teacher around what might be fair in terms of giving them that you know, 70 metre head start or whatever it might be. Is that is that right? Yeah

Louise: Absolutely. Just linking with the school and there is athletics, like little athletics, there's a sport does start from about six or seven, so they could do that. And the use of frame runners, as Dr. Lee mentioned, is increasing in little athletics. And so yeah, have a chat to your physio about trying a frame runner because that can be a really fantastic option for participation in athletics. I know Geelong little athletics has one boy that competes in his frame runner and he just competes in his age group because athletics is a very individual sport and so you're only competing like against yourself just alongside your peers. And so he just runs through his race with the other under eights and has an absolute blast.

Simone: Fantastic. When sports inclusion is done well. I'm keen just to hear we've touched on some of the benefits, but what else comes to mind? What, what do you see, Tony? What have you seen and experience with Georgia and both Doctor Lee and Louise, what do you see on a daily basis with some of your patients or clients as well.

Tony: So for me, if I look at Georgia, my gauge on when it's done well is her engagements and that joy that spark as Doctor Lee talked about that spark that you see in that child. I think that's when it's done well and when the child wants to keep doing it. I think it's just any child, doesn't matter if they have had a stroke or not. It's the same with kids. It's exposing kids to sport, it's exposing them to, well, not even sport. It's just exposing kids to different opportunities and once you see where that spark happens, so for Georgia at the moment it's dancing and music theatre and that's her spark at the moment. So we're really working around that area. We know she's excited about the Nippers programme starting up in December for her to go back there. So we we've seen that spark again and we know that's where you start to see that real enjoyment.

We're talking about our classifications here. So Georgia this year is grade 3 and so they had to run for their school. Their sports carnival is, is, is just a participation carnival. So there's no first, second, third ribbons or anything except for the cross country for grade threes. So the cross country for grade threes is 1.5 kilometres run and they give a ribbon for the first five across for both boys and girls. So we had gone through the classification process with Louise and then we spoke to the PE teacher and they said, well this is not really a timed event but what we'll do is we will adjust where Georgia can start. So I think she got like a 50 or 70 metre heads start where her starting spot was. To our surprise, we had everyone yelling going Oh my God, there's Georgia coming, there's Georgia coming, and here comes Georgia and Georgia crosses the line 5th for the girls. In her school. And it's a large school, so we were astounded at the determination. But what was the joy for us was the while she was in tears and crying and everything and going, are you in pain? And no, I'm just so happy. I'm so happy. I ran the race and I came fifth, but it was watching the kids along the way as some of the boys were passing her. They're going, come on Georgia, keep going. You're doing so well and just watching that support within that school environment. All the parents who know Georgia's story, all the parents on the side just, you know yelling out to Kim and I, oh here comes, Georgia get the camera ready go Georgia. Everyone in the community getting behind and really supporting. So just the other day Georgia said to me, she goes that cross country was my proudest moment for the year and that was just a conversation in the car just came out and it really resonated with us that OK, so this is the joy, this is a real spark and that really sits with her. So never have never hold back with your kids. Give them every opportunity to go and explore and it's really just working with your team around you. As a parent of a stroke childhood stroke survivor, the most critical thing I can say to anyone listening in the same position is you're not on this journey alone. You're on this journey and you have this support network around you. You have your medical team, you've got your allied health rehab team they're supporting. You have your community, be it your school or your greater community, there to support you. Don't be afraid to step out and explore where that support comes from.

Simone: What a beautiful story. Georgia's cross country run. Thanks for sharing it Tony, and hopefully for Georgia. But also sharing her story and the joy. I really love it. And anything else to add Dr. Lee or Louise around when it's done well, or even just some final tips to wrap up the episode for parents or families or even it could be, you know, schools that might be listening or sporting organisations that might be listening to this episode. Is there any final kind of practical advice that you have to add around inclusion? When it's done, well.

Dr Olivia Lee: I'll go first and let Louise tie it all up. PE teachers love it I'll ask the parents to go and ask your teacher, you know, school, sports, Victoria is coming out, you know, ask him about multiclass. You know, how can we get that, obviously the therapist will have to do it, but it starts the conversation, It gets the teachers thinking. If the child is doing physio in the hall next door when the PE class is there, then something is going wrong. Because in fact we should bring in our resources to say, oh, here is your PE programme, how can we be inclusive? What are the skills that are required?

There's a lot of definitions of sports inclusion on the website and I kind of pieced, it's about the child and family being involved in whatever sport they choose, with whatever support they need and in a fair environment so that the child can shine and show their strength. And their contribution and that they are recognised and that the family can engage in a way that is meaningful to them. You know, your family, your child, belongs to you. And as a family unit, you know all of these flourishes the experience that is in line in enriching our children's experience. So it doesn't necessarily need to be pathway for competitiveness even though we try to aim high. But at the end of the day it's for fun, it's for leisure, it's for inclusion and it's teaching our children that they can they can give it a go. And there are supports all around you because with the right support all children can participate.

And you know a very easy way to tie in every little thing that we've talked about today. I don't know whether it's called a pneumonic or an acronym. So I'll leave it to everyone else to define.

But SPORT. S for Spark we need to find a sport that sparks joy. That covers the six aspects of positive childhood experience of fun, fitness, function, family, friend and a future. P is for being Proactive. Look at our Paralympians, look at their website, look at the sports that they're doing and that give you examples. You know, find an example that your child can relate to. And I'm really excited about next year 2024 in Paris, where Paralympics and Olympics are in the same avenue and we're teaching our children that we can all be equal. O is for Obstacle. Recognising every obstacle that your family faces, whether it be in knowledge or in equipment, in environment or the rules of the game you know, and learning how to turn it into an opportunity, into a learning and development opportunity for your child and family. R is for Reaching out. That's help all around. It's reaching out to your therapist, reaching out to your coach, get them talking to one another, get them to talk to your teachers and find a support worker. Sometimes you need support workers who matches your child and can just make your child wants to learn, build on a new skill you know, overcome that barrier and be the do the best and enjoy. And finally, T is in Trying out as many sports as or trying out as many experiences so that the child knows that they can they learn self-competency and they find their tribe really, and find your community.

Louise: The F words in disability like is we just use that all the time that fun brands fitness future family and function like for all our goal setting. And yes so it's really important to think about all those aspects and sport fits into them all. And you know the other one just didn't try it like Tony's mentioned today of her he said athletics, golf, dancing, musical theatre, tennis. You know and that's what a typical developing kid does. They will try heaps of different sports, there'll be a different sport every season and so yeah, you might have not a great experience at one particular sport. Try a different club. Try a different sport. Try chatting to somebody else. Yeah, until you do find that sport or that activity that sparks joy. And it might not be one, it might be a different one every six months, or it might be a different one every year. And so you know just keep on trying all those different things as well. I thought I might just briefly touch on the NDIS as well. We have talked about equipment and you know the financial barrier to participation in sometimes. So absolutely, you know following a stroke when you're on your NDIA plan, therapy hours should be covered and it's the those therapy hours can be used for the skill based development for participation in Group based activities, chapter therapy organisation. If they're not running any groups, is there just like one or two other children with a similar ability that they could link in with because your kid isn't loving the 1-to-1 but wants a little bit of social interaction as well. That's how our group programme started. We had three or four kids or working on a running goal so we just combined them and they had so much more fun doing it together. And yes you can use your therapy hours for your therapist to go to the sport with you to have the conversations with the coach to do a bit of that research for you about what is available in the sport of your choice. You can link them in to help you out because they've got different resources and also then with the equipment. So it is a little bit harder for an NDIS perspective to get equipment funded for a pure sports aspect, like if you're looking at it, but it can be done. They can fund sports wheelchairs, you can get frame runners if it's in your goals and you list your goals in those areas of fun, friends, fitness, future, family and function. Have all your needs for the equipment, how that links in to all those goals and you can get like your equipment funded as well.

And I think one other thing to mention for like PE teachers and sporting organisations there is quite a few good resources out there. So Sport4All does run an online programme of how you how inclusive is your club and what could you do to be more inclusive. Most sporting organisations will have like an inclusion officer, like I know Geelong Little Athletics. They do have somebody who is included in representative. So if you do go to a club and they're not sure how to do inclusion or do frame running, you can link in with the sporting organisations and Deakon All Play have different online resources, particularly around dance and AFL and with the Starfish Nippers, Surf Life Saving Victoria do take running those programmes and do have online training for clubs that want to do the Starfish Nippers programme. So they're definitely on the increase in terms of what's out there for community organisations and I think physios are really understanding the importance of their role and hopefully you can find a good physio to link in with to help you as well.

Simone: Thanks so much, Louise. And part of the Childhood Stroke Project that Stroke Foundation are currently running with Tony and the incredible group of lived experience members is to look at developing and in the process I think of developing a sports directory with some resources and links and that would be a national resource as well. So we'll make sure that we share that back with the community as well. Once that's done, I think it'll be a really great, you know, really compliment this amazing podcast episode. I just wanted to say thank you to all of you. It's just been really such a pleasure to have you on and to hear all of your knowledge, wisdom, insights and that that experience that you have in this space is sports inclusion such an important topic and I know that one that will be really well received by the community. My final question is around that regional on rural aspect you touched on that it can be more difficult the more rural that you're living. Is there any other way that the people living in those communities can access more inclusive activities? You've touched on, you know, I think we've touched on sort of starting in your backyard, working with your therapy team, you know, looking at working with your peer teacher in schools and then obviously branching out into community. Is there anything else or anything that you've learned or heard over the years that can be really supportive of people that might be living more rural or remote?

Dr Olivia Lee: I actually think that it's really hard unfortunately and lots of work that needs to be done and I kind of wish there was some, you know, someone with a bit of a technology where people can register in the rural. I, you know, I often try to think I'm not very technology savvy, but I'm putting this out there because if there was an app that can link people to say I want to join this and then suddenly you can see all the all the athletes you know, children who wants to participate and you can see how you could get together, that would be really good. But that's a lot of work that needs to be done. And I would even say that, you know, reach out to, you know, Paralympic and Disability Sports Rec, write to them, keep writing to them to say we need this sport here. We have a group of how many families you know, there are schools, special schools, other organisation jump into other organisations that could link families together to have a louder voice. I know certainly in the Shepperton area I've met families where they love AFL and AFL is not part of the Paralympic but it's part of the disability sports and they've made up their little community there. And suddenly they have competitions going up all the way to Wodonga. And it's about spreading that news, finding avenues and using foundations such as like Stroke Foundation or CP Foundation really to get their voice heard and pass on that message. I think we all have a role to play. It's a gap and more work definitely needs to be done in that area.

Louise: Yeah, absolutely. It's tricky because, well, Geelong is regional and I think one of the problems we, you know, have is sometimes they ask, it's that communication and that knowledge about the sports as well. I think sometimes they do exist. Like we do have a wheelchair basketball competition in Geelong, through an organisation called Parallel Sports. But even then like not everybody is interested in wheelchair basketball and so it's keeping up the numbers to keep them going can be difficult in rural and regional areas. But if you are interested in a sport, I think yet contacting that organisation to say, you know, we would like to participate, we've got these couple of kids and look at how you know, sometimes people don't know what they don't know. And so if you do go along and say I'd really like to participate, this is how I think it could look. Generally. People are really prepared to be accommodating. It just takes someone to go and give it, give it a go the first time, which can be tricky and there are. AAA Play is another one that is trying to build is a resource for what is available in the community. It does tend to be more Melbourne centric. That's a Victorian 1. But yeah, there are some councils will list on their web pages about where what sports are more accessible or what's accessibility of particular venues where sports are played. So council websites can be another good resource. But yeah, I think, yeah, physios need to talk with each other in local areas as well. I think sometimes we can tend to be, you know, quite by ourselves. So that's something I try and do is just let all the physios in the area because sometimes the sporting organisations don't link in with the physios and but they can be the ones that then link their people with the disability into sport. So I think communication is key. Just letting everybody know what's available.

Simone: Some great tips, Louise, to I guess continue to improve the situation for those more, more rurally. Thank you again so much, Tony, Louise and Doctor Lee for being on this episode. As I said, it's been absolutely fantastic. I can hear and see because we're also on video here. The passion and the incredible, I think, you know, just, yeah, excitement that you all have around this topic. And yeah, I'm really, really, really looking forward to sharing this episode with the community. So I think it's going to be a hit. But thank you again so much for coming on the episode.

Tony: Great, Thanks. Thanks so much.

Dr Olivia Lee: Thanks

Louise: Thanks so much Simone and thanks Tony, for linking us all together.

Tony: Thank you both for joining. You've been both pivotal in George's journey of sport inclusion. And yeah, I hope this feedback out to the rest of our community to see how we can all link together to, to get our kids involved in sport and see that passion.

Simone: If you found this episode helpful, please share it with your family, friends and colleagues. Subscribe to the podcast to be notified about future episodes and leave us a review so more of the childhood stroke community can find us.

Simone: That's all for today's Childhood Stroke Podcast. Find out more about Stroke Foundation's Childhood Stroke Project by visiting Stroke Foundation dot org dot au forward slash childhood stroke. Stroke Line’s Health professionals provide practical, free and confidential advice. Connect with them on EnableMe or call 1800 stroke. That's 1800 787 653. The advice given here is general in nature. Discuss your situation and needs with your health care professionals. This series is presented by Australia's Stroke Foundation and funded by the Barr Family Foundation.