Invisible Disability
Around 50% of survivors of childhood stroke live with disability, and while some can be seen, children are frequently left with invisible or hidden disabilities. That is, conditions that significantly affect their lives, but aren't always visible to the outside world. Invisible disabilities can include fatigue, cognitive, or thinking difficulties, emotional difficulties, and other neurological issues that can continue long after the stroke occurs.
In this episode of the Childhood Stroke Podcast, we speak to a survivor of childhood stroke and a neuropsychologist to explore the invisible challenges children face after stroke and support systems available to help them navigate their journey.
Guests:
- Tala Olins-Miller, a survivor of childhood stroke, physiotherapist and member of Stroke Foundation's Lived Experience Advisory Group.
- Professor Vicki Anderson, paediatric neuropsychologist with over 25 years' experience working to improve the lives of children with brain injury, including stroke.
Transcript
Simone: Welcome to the Childhood Stroke Podcast Series. In this episode, we're diving into the topic of invisible disability. Around 50% of survivors of childhood stroke live with disability, and while some can be seen, children are frequently left with invisible or hidden disabilities. That is, conditions that significantly affect their lives, but aren't always visible to the outside world. Invisible disabilities can include fatigue, cognition, or thinking difficulties, emotional difficulties, and other neurological issues that can continue long after the stroke occurs. And in this episode we're talking to a survivor of childhood stroke and a health professional who specialises in childhood brain injury. And I'm really excited to introduce you to them today.
Tala Olins-Miller is a physiotherapist, fitness enthusiast, and a passionate advocate for stroke awareness. Tala is also a valued member of the childhood stroke Lived Experience Advisory Group. Tala brings a unique and insightful perspective on the challenges and triumphs of living with an invisible disability after childhood stroke.
We also have Professor Vicki Anderson joining us, who is a paediatric neuropsychologist. Vicki holds positions at the Murdoch Children's Research Institute and the University of Melbourne and works clinically. With a career spanning over 25 years, Vicki has dedicated her work to improving outcomes for children with brain injuries, including stroke. Vicki's contributions to this field are internationally recognised, making her a leading expert in paediatric neuropsychology.
So, thank you so much, Tala and Vicki, for joining us today on this episode.
Vicki: Pleasure.
Tala: No worries.
Simone: Thanks, Tala. I'm going to start with you. If you are willing to share a little bit about your experience or your journey, and feel free to share as much or as little as you'd like. But tell us a little bit about what brings you to the podcast what brings you to this area of childhood stroke.
Tala: I had my stroke when I was 13 years old. It was the day after year 8 finished for the start of summer holidays I was board paddling at Surf Club, where I had my stroke in the water, luckily falling forward on my board. Otherwise, I also would have drowned. So, I got taken to hospital. I spent the night at Princess Margaret Hospital. and I was actually discharged the day after, as they thought it was only a concussion, even though I had full right sided symptoms. I couldn't move the right side of my body. My mum took me home. I pretty much slept for 18 hours straight. She woke me up on the Monday morning, saying that I still wasn't great, so I was taken back on the Monday where they were able to do scans. It was over the weekend that I presented initially, so they said that I was only there for observations really. They couldn't do anything else. Once I had my scans, it was showing that I had a cerebellar stroke, so my summer holidays were dedicated to rehab.
It happened at a time of my life where I guess all teenagers just want to fit in and not stand out. So, it came with its own difficulties. Being 13 years of age, I suppressed a lot of what happened, emotionally for a long time. Until my 10-year stroke anniversary, which was in 2019 when I realised I was ready to speak a bit more openly about what had happened to me and hope to use my story as a way to advocate and create awareness for paediatric stroke. So, I did this by fundraising through exercise events. I'm a big advocate for exercise. Not only will it reduce the potential for another stroke to occur, but it's just always something that I've been passionate about. So, in 2019 I competed in the HBF Run for a Reason, and 2021 competed in the Rottenest Island channel, swim in WA. After that I was working with the Stroke Foundation just to do with the fundraising aspects, and at the end of 2021 the Stroke Foundation reached out to ask if I wanted to apply for the Lived Experience Advisory Group for childhood stroke which we commenced. It's a mix of parents of stroke survivors and stroke survivors themselves. They're an amazing bunch of people that together we have come together as a team, and we've gone on our own incredible journey, which yeah, we will all continue to do so. So that's sort of a summary of my journey.
Simone: Thank you so much for sharing Tala. Yes, that's so much to, I guess. Deal with at such a young age, and, like you said at that peak part of your life where you know you're a teenager. Thank you so much for sharing.
Vicki, you're a neuropsychologist. Can you tell us a little bit about what a neuropsychologist does, and the sorts of things that you help people with?
Vicki: Sure. So a neuropsychologist is someone who is really interested in how the brain works. and in particular in the context of stroke, how that insult to the brain impacts on adults and young people's function. I'm particularly interested in kids because their brains are developing really rapidly, and the effects of stroke are actually quite different to what they are in adults. So in adults will often see someone with big language problems or as Tala's described weakness down one side of their body. But that's relatively rare in kids. So we're really interested in things like attention. memory and learning, social skills, social cognition, the ability to understand what the emotions are in your environment. We're also interested in particular in fatigue, because it's a really big problem for kids who've had any kind of brain insult. And then I suppose my team and I are slightly unusual in terms of neuropsychologists, because we're also really interested in mental health. And I think Tala described perfectly why we're interested in mental health. Because when a child has this kind of insult to their brain, it's not just their brain and their cognitive function that's affected. Their family is traumatised, and the young person also has to adjust to the issues that they have. And so it's pretty common to have many mental health symptoms, anxiety, depression, losing confidence, I suppose, is a big one. And Tala, your stroke happened at really the worst possible time, because, as you say, teenagers like to fit in but also often teenagers feel really invincible, and to have something like a stroke happen which is pretty rare in kids, is pretty devastating. So I suppose that's the picture of what we tend to deal with, and how we try and help.
Simone: Thanks, Vicki, and you've touched on some of the invisible disabilities, I think already. But just to outline what are the most common ones that you would see in children that are experiencing or have experienced a stroke.
Vicki: So interestingly, I think the 1st invisible disability Tara also touched on. And that's the diagnosis. So, diagnosis of stroke in children is really tricky, because no one really expects a child to have a stroke. In the past, it seemed to be quite rare, now we can pick them up better. It's not as rare as we thought it was. So that's the 1st invisible thing. And so diagnosis can be wrong, and kids may well, then, not get the care that they need. But I mean, when I talk to kids and families, the big things that they talk about is mostly after a bit of rehab. They look perfectly normal on the outside. but they do get really tired. And I should maybe say, to start with that the symptoms of stroke are different in every child depending on where the stroke happens, and Tala had a cerebellar stroke. But other people might have strokes in language area. And so, the symptoms can be different. But overall, it's this issue that kids really, if there's not something physical to go by then other people around you, it might be your peers, might be your teachers, might be extended family members, really kind of expect you to get better. And there's about a 6-month period where you're allowed to have those symptoms. And then, all of a sudden, you should be better so that you make everyone around you feel comfortable and it's tricky, because often there's still those attentional problems, fatigue problems, difficulty getting organised. And many of those issues cause problems with learning, secondary problems, with learning and school progress, but also with peer relationships which are so critical in kids. So there's very many of those that occur, and as I say that as a result of them being invisible, young people can feel really unsupported by those around them, and often victimised and even stigmatised by people who don't really understand what's going on.
Simone: Tala, I know you mentioned a lot about the immediate trauma that summer was spent in rehab. Can you speak to some of the initial challenges you faced. Were they straight away, that more invisible disability? Or was there a combination of different things, just to hear a little bit more about that initial phase. And then perhaps, you know, as you've gone on throughout your life, how that has changed, or whether some of those invisible disabilities have stayed with you.
Tala: I guess, in that initial phase. Yes, there was physical signs, and that was what was mostly my rehab was focused about. So throughout summer holidays I was in intensive OT and Physio. I look at it in a way that I was lucky that it happened over summer holidays that I could dedicate my rehab through summer holidays without then having to be possibly held back, so that definitely helped to stay with my bunch of friends. But when Year 9 started, my gross motor skills were back pretty much to baseline. My fine motor skills were definitely still a work in progress. Post-stroke fatigue was definitely something that by that stage, a few months after and commencing school again, really did hit. Mentally, I'd be jumbling words on a page. I couldn't focus. Physically if I was sort of getting towards my limits, my tremor would come back. I'd slow my speech a little bit. I'd be needing to rest and sleep for ridiculous amounts of time. But Vicki touched on this as well, I guess, because my gross motor skills were almost back to baseline. If you looked at me walking around the school yard. If you saw me at lunchtime. I was heavily involved in sports, and I was able to get back to sports only a few months later, which was great, for when I started back at Year 9. If you looked at me during sports you wouldn't have really known that any of this would have happened to me. So I guess that then came with certain comments from people in the community, peers, that it looks like I'm fine. However, then you transition to into a classroom and because I couldn't write fast enough, I'd use a laptop. So again it comes back to, then I would stand out within a classroom that you look different, especially because this is back then. So my stroke was in 2009 year 9 was in 2010. We didn't use laptops, everyone was still handwriting. So you were in a corner of the classroom and it you did look out of place. So I guess it was just navigating that whole inside classroom. You probably are being perceived a little bit different outside of classroom people don't think there's anything going on, but then your own mental struggles as well with more of the fatigue. I also think that we've come a long way, even in with the last 10 years, with mental health, and I look back at my initial challenges and realise there was a lot more mental side of struggles that I probably didn't realise at the time, and just dealt with by myself, or bottled up because there wasn't really much of a push, mental health wise to check in post-stroke, as there was more. okay, do your rehab with the physical barriers that you may be experiencing.
Simone: Yeah. And I think I hear adults still say that today, Tala, unfortunately, that there's still such a huge focus on that physical aspect of recovery, particularly in the initial. And it's down the track, then, the mental health stuff starts to become more evident that you know there's not as many resources in that acute rehabilitation phase, and even immediately in the community, until you know the alarm bells are raised. And you know, you start to go. Okay. I think I need to seek help on the mental health side, the emotional side. You talked a little about how it affects you at school and a little bit of guess around. Then maybe the impact of that after school. So how did you feel like from a social perspective? You said there was a lack of sort of understanding. You still felt quite sort of separated, particularly in the classroom setting with the laptop in the corner when laptops weren't a thing. Were there other ways that you felt that it really started to affect your social life as well? And outside of school perhaps.
Tala: So I guess when it comes to how I was. Yes, it was difficult, and yes. I guess there were those barriers as well inside of the classroom I pre-stroke and post-stroke. I am a very social person. I have a great group of friends. I always have. So I think it was something that I was often able to manage by myself, or just behind closed doors, even talking to Mum. So I'd say even now some of my closest friends may not have realised little comments that would have been made at the time, and the impact that it would have but just try to be as resilient as possible and know that, okay, I guess this isn't the norm. People haven't been used to the idea of kids having strokes. But yeah, it did lead to a bit of a suppression of emotions. I guess that when it came to social life as well, I didn't want to miss out on anything so often there would be, and being a teenage girl, fights with mum, pushing. I want to go to this. I want to do this. I want to do this. And sometimes you just even really, you'd have to get to your own realisation of going. Okay. You've pushed it too far you need to rest. Other times you would go to things, but then you'd pay for it afterwards. So a lot of it just came down to trying to find the right balance between navigating post-stroke fatigue and trying to make sure I'm taking care of myself, but also making sure that you are trying to integrate and live just a life that a normal teenage girl would interacting with her peers and interacting with her friends and her sporting commitments. So a lot of what I think came down to in those years was just a bit of just trying to find a balance between both sort of sides of the spectrum really.
Simone: Yeah, thank you. So you've kind of touched on some of the coping mechanisms and strategies. There was a lot of maybe dealing with it behind closed doors, you know, really reaching out to your mum for that additional support and the juggle and the balance of trying to meet the social needs of as a teenager, and not wanting to miss out, and then juggling the particularly the fatigue as well. Vicki, what should families do if their child is experiencing difficulties in this sort of area of invisible disabilities?
Vicki: Families are absolutely critical in recovery. And it sounds like Tala, you've got a great family, and you're very resilient. And they're exactly the kind of things that help young people, children or adolescents recover really well. But I think because these problems are invisible, and because often parents are really traumatised by their child having a stroke. It's an event that kind of happens out of the blue. You don't expect it. In the past, there's been very few resources available for families. So I think it's really important to be talking with the medical team but also to have really open channels for discussion at home. So Tala could talk to her, mum. And that's really critical. You need to be able to have someone to talk to, and parents need to look after their own mental health, too. I do think the focus is so much on the physical side of things. And we actually, as therapists can do a really good job on the physical side of things. It's kind of the easy bit in many ways, because those parts of the brain that are important in things like motor skills are pretty simple compared to the things the parts of the brain that are involved in social competence and attention and learning. And so when we get to that level, there's not so many good strategies and programs for helping people as Tala you would have experienced. So what we tend to do is to try and compensate for weaknesses. Tala's done that all on her own. But there are ways that you can do that primarily within the school context. I think we're going to talk about that later. But really for parents, I think it's just being there, watching our kids recovering. Really encouraging the young person to get out and try things, because often with that reduction in confidence, after a brain insult kids can really get anxious about going back to what they were doing. And so the longer you take to get back to things the harder and more anxiety provoking it is. So that kind of not throwing them in the deep end. But that gentle okay, I think you can do that, and let's push it a little bit more. And but balancing things along with a healthy lifestyle as well and really encouraging the social interactions. I think of all of the things that important in recovery. It's maintaining those social connections, because that's where you get your fun out of life. It's where you get your connections, and it's just completely critical.
Simone: This topic of invisible or hidden disabilities. What do you think the kind of key misconceptions people have about it are?
Vicki: Yes, I think I mean it's frustrating to both the person who's had the stroke and to those around them. I think there's this, this kind of wish that everything gets back to normal in the family and in your friendship group. So there's a bit of a tendency to not want to see the difficulties. Not wanting to see that you might be a bit slower with writing, not wanting to see that it might be a bit harder to express yourself and while it's easy for us to put in place things like special support in the classroom for younger kids. That's absolutely not what an adolescent wants. You don't want someone sitting beside you helping you by repeating information that you've missed and things like that. That's just a disaster, because, you look different to everybody else. So there are ways that that can be dealt with and some of it is about education. And then it just depends on the context. So I think parents and families are pretty good at educating themselves about those things, and they will have a really good idea of the young person's fatigue or their memory in just everyday situations. I think it's harder when you get in group contexts, and and then particularly if the young person is quite bright, they can hide, as Tala's described, hide their difficulties, which is great in terms of the social side of things. But it has those secondary problems of getting really tired because you're having to work twice or 3 times as hard as all the other kids in your class. So what the neuropsychologist's role is, is to then go into the school context and talk about those issues, and sometimes and particularly in younger kids. The way these, the frustrations around, not being supported, will come out is in more temper tantrums and impulsive responses, getting angry with the people who aren't really supporting. One of the things we do a lot of is going to the school and trying to explain if someone is getting frustrated, then what that means is that their needs are not being acknowledged and met. So, putting it back on the system rather than the person and the need to be able to support them. So that's a lot of what we do. And it's pretty much all around those invisible symptoms as cognitive and social symptoms and mental health, I should add.
Simone: Tala, did you have anything to add on the misconceptions that you feel people have about invisible disabilities? You've touched a little bit, I think on your experience personally, but anything else you wanted to add in.
Tala: I guess, just on a broader sense there's still within our society the stigma of disability should be visible as such, so just trying to break that misconception in our wider society is crucial, and I think we've definitely come a long way from where we were 5, 10 years ago. However, we still have many steps to make forward. In terms of more people understanding that is not always what you see. There's often a lot more underlying underneath the surface of what people go through on a day-to-day basis.
Simone: And Vicki, you've spoken a little bit about some of the accommodations and support systems and your role, particularly in the school setting. Is there anything else that is quite common for you in terms of maybe working with teachers? Obviously, education you've mentioned is a huge component of that. But around accommodations and support systems that can be provided at school for children after stroke or brain injury.
Vicki: Yeah, there's quite a few things I think it, and probably the 1st one. Well, there's a couple of really cool ones. The 1st one is to have an understanding that these kind of acquired brain injuries like stroke are not stagnant. So children and adolescents will get better. And so I think there's a better understanding, as Tala said, about physical disabilities where there's problems that you're going to have to deal with all through education, and you don't really need to change your approach. But in acquired brain injuries you need to be nimble, because what might work at one point in time, in the context of stroke symptoms, might not be appropriate in the future. Similarly, what might work for an 8-year-old with the integration teacher sitting beside you will not work for a teenager. So what we try and do, I think in the best-case scenario is to try and partner with schools. But also partner with kids and families too. So in my mind, the best context to be working with a school is to have in the room, the key people from the school. So the principal or the key coordinator, the classroom teachers, if it's primary school, the other teachers, if it's secondary school, but also have the parent and the child in the room too, particularly for teenagers, so that everyone is on the same page. And then there's kind of a shared view and a shared agreement, and that becomes important when, because often schools busy and teachers are busy. Often things fall away over time, and so having the family and the young person involved, allows them to have the power to be able to go and say, Well, you know you didn't give me that extra time to do that task, but, in fact, if you look in my file, you'll see that that's something that I need. I mean, obviously, young person wouldn't say it like that. But being able to remind teachers, not always assuming that they know what is in that file, particularly as you change from one class to another. So that's really important. The other thing about being in a partnership is that you're all on the same level doesn't work. If someone like me comes in and tells people what to do. because I might know what a child's problems are from my nice, quiet, clinical context. But at school the child and and the teachers need to be able to manage in a very different context. So sort of talking through, I can say, my typical approach is, I'll say, well, young Billy has real difficulties paying attention, and then get the school. Let's say the classroom teacher say yes, I noticed that, you know they can't, and so get them on the same page by identifying the same problems, and then talk about how to support it, and the kind of accommodations that we would use will vary, depending on the person, but they'll almost always be, because almost always there is some attentional problems. And Tala, as you said, there'll be some fine motor writing problems and those word finding difficulties. And the fatigue. So basically, the story that we tell is it's the young person has to put in more effort to be able to do what the healthy young person is doing, so they'll get tired more quickly, so they need breaks. They need less homework, which usually the kids really like the idea of and perhaps it might be a good idea not to have a full load. It's a bit harder as you get towards the end of school, but we often again very popular with kids. We often suggest, maybe not doing a second language, because it's not all that critically important and balancing what the young person likes to do with things that are not so necessary, not core to school. So it's trying to shrink the tasks and the necessary activity to accommodate these challenges that young people have. I might just add, if there are specific problems like kids might have difficulty with their working memory. So, holding information in mind. then we can make really specific suggestions about not giving too many verbal responses, providing handouts or whatever you have on your school website. So using those kinds of things, but that's getting into the nitty gritty where it's different for every child.
Simone: Yeah. And would you also have a real active involvement in suggesting, say that graded return to school as well? So how many hours that person might be able to manage?
Vicki: Yeah. And that's where that kind of dynamic model becomes really important. Because, you know, we're obviously hoping, like Tala did, that recovery is really quite complete, and so that they can get back to that level. And that's what we're working towards always. And I think. If the school is supportive, then that is an added bonus, because what that means is that the young person feels like their issues are acknowledged, and they have less troubles adjusting, so less of those mental health problems come into play. So the better the young person is supported, the less likely that mental health, really severe mental health problems can come into play.
Simone: Tala, you've touched on a couple of ways that particularly as you went back to school. The use of the laptop, for example, to speed up being able to take your notes. Were there other accommodations or support systems that helped you throughout your schooling journey, and maybe even into your University journey as well.
Tala: So I was quite lucky. My faculty at my school were great. Vicki mentioned this as well, and I 100% agree that just getting all parties involved is the way to go about it. So I'd be there. My mum would be there if we needed anything from Physio or OT, then they were able to accommodate and help as well. And then the faculty itself. All of this was quite a learning experience, I guess, for everyone involved, because nothing like this had really happened, that they knew about our school before, but they were accommodating in terms of understanding if there were days that I needed to miss, due to just not being able to get out of bed with my fatigue, having open door policies where we can make formal meetings, or it could be a bit more informal. I'd go to a certain Dean and just go in for a bit of a chat if I needed anything, and I did mention about the laptop situation instead of handwriting. Overall, we manage that quite well. I think, more formally. There's also other options for stroke survivors that they can get individualised learning plans, outlining their goals and their skills, their strengths, any supports they need and the progress that they're making. I guess mine was a bit more informal, but overall it definitely was positive. And I think even then, going through. the main idea is, just get everyone involved. The more people you can have around giving ideas and collaborating the better outcomes it is going to be. I take that also from a Physio point of view, working with clients definitely, the more you can as a multidisciplinary team, you want your patient to be the focus. So it's always the goal of just try and get as many people involved as possible. And just be really, yeah, stroke survivors centered as such when making decisions.
Vicki: And Tala raises a really good point there, because I think one of the things that we hear often from young people and families is that everyone that they go and see tells them something different. And so, it's a big learning experience, as you said. To have to manage all of this new system that you feel ill equipped to manage often, and if everyone is saying something different like, if your physio is saying something different to your OT or to your speechy or to your psychologist, it's really confusing. So it's just so important to get people together. It can be challenging. But it's just so important that everyone is working with the same information and agrees on the same information. And I think if you put all of those bits together, it's so much more powerful than if you're getting information from each one of them separately.
Simone: That's a great point. We've touched on misconceptions. What do you think are the biggest barriers for people in understanding invisible disability?
Vicki: I think the lack of information And Tara mentioned that you were the 1st person at your school to have had a stroke. So it was really unusual for them. So I think it's sort of the lack of the unknown lack of really clear evidence-based information to use to support things, lack of an understanding of what the recovery path will be. And that's really scary, because, you know, you don't. I remember when I started, people used to say, well, if you have a stroke you'll be completely better in 2 years. and that just doesn't necessarily happen for a lot of people, but it also meant that many families decided they wouldn't do anything for that 2 years, which is the time when you really need to be working. So you know, I think, yeah, poor information. And just a lack of really good information. And in stroke, we're still really, in the early days of getting that information.
Simone: Anything to add. Tala, from your experience.
Tala: I agree with Vicki definitely. The lack of information and the fact that strokes they're complex and they can be just so ambiguous. Everyone's recovery journey is going to be so different to the next. Again, I'm just relaying back to Physio terms, but it's not like a pure musculoskeletal simple injury where you can put a timeframe and say definitively, this is where you should be by this post. It is going to chop and change over the years. So I think just the lack of knowledge around that, but also then not only for the individual, but trying to then get others to understand. Being a teenager and obviously a lot of people that surround me are also teenagers, trying to explain strokes and post-stroke fatigue and everything stroke related to a child or a teenager is going to be contextually harder than trying to say that to an adult because of just the understanding isn't quite there.
Simone: Like that broken leg with the cast, you know they see that journey of recovery with the cast on, and maybe crutches for a certain period of time, and then slowly, the person's back, you know, playing sport down the track. Yeah, it's just that lack of sort of that visual, almost of the recovery journey, and I think to that invisible disability, that ability to put yourself in someone else's shoes is much, much more challenging, I imagine from the invisible disability side.
We have touched on the school system. I just have one question that came to me around the importance of educating peers or the classroom, and Vicki, I guess, and also Tala, with your lived experience. Do some children and families want that covered in the sort of return to school pathway? Where do the rest of the sort of peers fit into that process of coming back to school? Or is it very again individual depending on the child and the family's wants and needs.
Vicki: So, in my experience, sometimes the child and the parents have different views which is really tricky. Sometimes parents don't want anyone to know about it, and then that leaves a poor child with no support. But really what my approach is is to go with the young person's views. Because my role is to make sure that they feel as comfortable and supported as possible in their classroom. And so, I'll use a 13-year-old again, if they really don't want an integration support person sitting next to them. Then the worst possible thing you can do is do that. So you know you've lost all of the ground you've made in terms of the therapy. If you don't take the young person's views into account. But some 13-year-olds really do want that support. And so it's about talking to them about what's going to be useful talking about what's viable, what's feasible in the school context. So some schools are really supportive and have got the resources to do great things. Others aren't so supportive. And so then thinking about well, what can happen at school, and what has to happen in other places? Or is it a good idea to move schools which has its own sort of whole range of complexities associated with it? But yeah, I think it's really important to be guided by families and young people. And one of the things that we do these days which probably Tala, wasn't in place when you had your stroke, is that we use this goal directed approach. So instead of saying in Physio, and you probably do this in your practice now, you have to do this exercise, because it's this particular part of your physical function that isn't working. You have to do this, you know, 20 times a day, or whatever. What we, try and do is say what's your goal? What do you want to be able to do. What's the thing that you love most doing, that we can help you get back to. And then use a kind of a that multidisciplinary team approach to be able to build on the set of skills that's important. So, clinicians often find that quite challenging because it means that they can't stick to exactly the things that they're used to doing, which is controlling what the therapy is. I class myself as a therapist here, too. So it's challenging. But it actually is the way we need to think. And that's really the way we're trying to move in the future.
Simone: So very much, being guided by the young person and the families. Tala. Anything to add around that in terms of, I guess the peers, the classroom? What your approach was. You mentioned. You know that. You had a really close group of friends, and that some of it you dealt with, behind closed doors, but certainly there was perhaps a little bit of education to your friends, but the level of understanding at that teen age, you said. You know, it's quite tricky. They've all got their own lives and busy and their own interest. But anything that you want to add from your own personal journey.
Tala: Again. I know that everyone's different. And Vicki touched on this, that there is sort of that contrasting between some people sort of will put it out in the open and say, I've had a stroke, and this has all happened, but others will shy away from it. I think we'll touch about it a little bit later on, as well in terms of tips for parents. But I look back at especially my early phase in hospital, and I spoke to Mum about this last night actually as well, but it really highlighted how much she wanted to just normalise my post-stroke life as much as possible. So I was someone who was very social. When I was feeling okay for short bursts of time. My friends were coming in to see me in hospital. So there was that understanding about what's happened, but also just getting that social engagement, because if it was a normal summer holidays, I'd be wanting to hang out with my friends all the time. I got discharged from hospital, and it was a Sunday, and I went straight down to Surf Club just for about an hour. I obviously wasn't moving around, but it was more just to say Hi to everyone, because what was most important to me, especially being a teenage girl, was being around my friends for as much as possible. So, mum, really, after chatting with her last night, it got me thinking it really does highlight, how much she just wanted to try and keep my pre-stroke life as much as possible, I guess during that early phase, especially because friends is what I valued and still do value a lot in my life. So yeah, I guess everyone is different. But it was definitely a case of guiding my life by what I wanted to do, and who I wanted to surround myself with, and just keeping up with the things that I wanted to do, even though I had suffered a stroke.
Simone: Yeah. Social life was a big goal it sounds like, Tala. Thank you. In terms of advocating any advice or tips on how families. And I think that's also children, kids, young people, how they can advocate for themselves around invisible disability. I think we've kind of touched on a few things that potentially cover this. But anything that comes to mind around specific advice around advocating on this topic.
Vicki: This isn't just true for stroke. It's true, for all the invisible disabilities like learning disability and traumatic brain injury, and so on. What I say to parents is that they have to be comfortable in getting the label of being neurotic parents. Because the key thing in advocacy is that you can't go away in the school system. So you know, we all know the limitations of the school system, and it's really easy in a busy school context to forget or to say, Oh, well, you know, now she's looking fine. We don't have to worry about all of these extra accommodations. But so what parents have to do is just be there to say, look, you know, they just come home exhausted tonight and just wanting to check in to see if all these things are in place, or you know the quarterly or termly meetings with the school really important. So it's really, if parents aren't really meticulous about that, schools will just let it go by the wayside. And that's when things become tricky and what we see that happens in those cases often is that it's behavioural problems that start coming out, particularly in younger kids, but also in adolescents. That because you're not getting your needs met. Then you're frustrated, and you can be angry, and self-regulation is one of the things that in more severe stroke can be really impacted. So more likely to say what you think than to monitor what you know you should say. You don't want to get to that level. You want to be able to manage things earlier. So for parents that's really important for them to be armed with information, too, and you know, I think in the past that's been more tricky, but also harassing your doctors and your rehab team about getting written information, making sure that that's available and making use of the resources that are out there online. Now, when I say that I don't mean googling things because if you Google stroke, it looks like every child with a stroke will be incapacitated for life and never able to function normally, because there's this big stress on the really severe end. But you know, using resources like, I know that the Stroke Foundation has in the past 12 months put out some really good resources around understanding stroke and the pathway of recovery. And it's those kind of trusted resources that I think families can get a lot of information and support from.
Tala: I agree as well with Vicki, so definitely more from a family perspective. I again spoke with my parents, and they just highlighted again how much they pushed for certain things, and especially over 10 years ago, when there was a bit more of a lack of understanding with childhood stroke that they just said even if it feels ridiculous, what you're asking for, just keep pushing. If it feels right. You know your child at the end of the day. If you see that they are struggling with anything, then go to schools, go to GPs, go to your neurologist. Try and get as much information as possible. But just keep pushing for what you think that your child needs support with, and don't stop until you get it really.
Vicki: And I suppose, just following on from that. Things that can be quite informal until the last couple of years of school. And it's really hard for young people who've had a stroke to get the supports that they deserve in their year 11 and 12 so that they can get into whatever career they want to get into if schools haven't had those things in place along the way. So if you come in and say, Oh, gosh! Year 11. Now this, this young person has all these problems, and we've never noticed them before. That is not a story that most of the authorities really like to hear. But if the school is meticulously kind of monitored, and having accommodations in place, that they see work and often with stroke it's not about that the child doesn't have the cognitive capacity to be able to do things. It's that they get fatigued or their attention span isn't great enough, or their processing speed isn't good enough. So if you put things in place like extra time and breaks and maybe even dropping a subject or 2 in those last few years. If you put those into place, what you you're able to do is get the best possible outcomes for the young person that then allows them to be able to go on and choose the careers that they want. So there is an important aspect of that kind of pushing and being neurotic.
Tala: It's interesting that you say about that as well, Vicki, because to an extent that's what happened with me. So I started using my laptop in year 9. They, the school, was all okay with that, and I guess because it was lower High School, the school could just dictate their own rules then transitioning to year 11, where I was going through your harder subjects, and going through or ATAR, or WACE, or whatever they call it now. Things became a little bit trickier, because they realised that there were certain standards that they had to be upholding to from a statewide basis. So I then was told I wasn't able to start using my laptop for exams anymore, which I had then transitioned. Tests were all written by the end of year 10, but exams were still on laptops, and then that got taken away, which then caused a whole other commotion of dealing with OT and doing more specific testing that we could put forth to say, no, I need some sort of assistance. So year 12 and year 11, I was able to get resting time and English, and a bit of additional writing time. But it definitely even still with already having adjustments in place from the lower High School years, then transitioning into upper High School, it became more of a reality that there was actually certain standards that we have to uphold and go through more of a formal process to work out what that would look like for year 11 and 12 exams, too.
Vicki: And I think sometimes, you know, if you're one of those young people who has only the invisible symptoms of stroke, then what happens is families forget. And when you start having trouble in year 11 and 12, because you don't have those things happening, then they've lost all of their connections with their medical team. And often I'll see someone in kind of September in their year 12 year because the parents haven't really known that they could come and see someone like me or an OT particularly OTs and psychs, I think, are important here, and actually provide that documentation. So it's you know, you get out of the rehab system and there's not a clear message that you can come back in in those important transitions. And I actually think that's really important. I've been working for many, many years now, and I still see some of the young people that I saw when at first, when they were 2 or 3, and I think that kind of long term understanding, and the understanding that you come back when you need to, as opposed to us being paternalistic as clinicians, and saying, you must come every 2 years to see us to be reviewed. I don't think that's helpful. For people like Tala, who got their life back on track. That's not helpful. You need to be able to come when you need us, not when we tell you you need us. So there's a few things in the system that we could improve in that way.
Simone: Yeah, I think such an important reminder that, you know, remember, you can tap back into that service that those teams that have supported you at other points in the journey. I think it's a great reminder for families and big part of the advocacy I think, Tala, you know you're having to get perhaps more active again in that advocacy space in those crucial years, because things were different, because there were those standards for the state-based testing. We're nearly at the end. But I would love to ask. Perhaps this is for you first, Tala. What 3 pieces of advice would you give to a child or a young person could be a teenager similar to the age you were when you had your stroke, who might be dealing with invisible disability. What would sort of your top 3 pieces of advice or tips be.
Tala: Sure so definitely first of all, be kind to yourself. You can only do what you can do. Look after yourself, allow time for recovery in that early stages post-stroke. But just don't be too hard on yourself. There is a lot going on during that time to navigate, especially then, as a child or a teenager. So yeah, just look out for yourself and be kind to yourself is my number one.
Number 2 finding a sustainable routine. So this might be quite different to what your routine looked like pre stroke. However, I think it's really important that within that routine that you find the balance. Make sure that you allow yourself time in your week to do something that you enjoy. That's not part of therapy or school. So, whether it's sports, whether it's socialising, music, arts. Just make sure that within your sustainable routine that you have something that makes you really happy, and that you really enjoy. And, thirdly, celebrate your successes, even if they're small. Linking your small successes together, is going to build you up for success on your long journey ahead. But it's really important that you do celebrate those little wins as well.
Simone: I love that. Thanks, Tala. Vicki, any for you.
Vicki: Mine are a bit more clinical. Tara. So my 1st one is ask questions. Be really annoying. So ask questions of your doctor, of your therapists. And really take control. And that's not necessarily easy. But you know they're meant to be helping you and you really need them to understand what is going to be useful to you, you know. Hence that kind of goal directed approach. The second thing is, don't look for information on Google, because it's really bad and distressing. And everyone gets really despondent if you use information like that. So use trusted resources. And I think if you're comfortable talking about what's happening. This is for parents and for kids. Get your support networks in place, and it doesn't mean you always have to be talking about negatives. You can be talking, as Tala just mentioned, about the gains that you made celebrate those. So you know, within the family celebrate those. And I suppose just this is for me as an old clinician. One of the things that I find just so rewarding and so much fun is to hear from the kids and the families that I've seen over the years, and to understand what they've been doing, what their challenges are and where they've got to. And yeah, what they're doing with their lives. I mean, in a clinical setting that helps me to be a better clinician. But as a person. It just is so interesting and rewarding to hear stories like Tala's and with the groups of kids. I say, there's lots of really similar great stories. About what people who have had enormous challenges in their lives have actually managed to do. And often they don't even realise how good that is, since that's where that resilience is so incredible and Tala you’re a great example of that resilience and doing great things with your life, and then giving back, in the form of a physiotherapy career, too.
Simone: And you mentioned, I think one was for parents. Is there any particular tips, Tala? And also, Vicki, if you have any more to add for the parents or the caregivers of young people who've had stroke.
Tala: So definitely for parents number one, be patient. It's during a time that there's a lot of emotions going crazy. There's a lot of obviously physical changes happening. And then, if you're going through your teenage years, just your normal hormones. So a lot of changes occurring, and
I'm so grateful that my parents were able to just be patient with me, because there was definitely sometimes there that I would have been a bit horrible to be around, so things will get better. But patience is the key. Number 2. Allow for ongoing adjustments within the child or teenagers schedule, so circumstances will change throughout a year. It's okay to be having breaks from therapy or extracurriculars, or whatever is needed throughout the course of a year, but just prioritise what is most necessary. But sometimes yeah, sometimes especially being a child or a teenager going through normal school life. But therapy on top of that, plus your extracurriculars and everything else that life throws at you. It's okay just to take a bit of a step back at times. And then, lastly, just checking mentally on how everyone's going. Not only the stroke survivor, but parents with caregivers, parents with their other children or their partners. Because it isn't always as we've discussed a lot about today. The physical signs. A lot of it is to do with that mental side of post stroke for the stroke survivor and their families themselves. So it's really important to make sure that everyone's going okay.
Vicki: And I'll just reiterate a few be annoying and neurotic as parents. I think that's really important to be an advocate for your kids. I think another one is to take your own mental health seriously. So we've done some work with parents of kids who've had stroke and the amount of post-traumatic stress disorder that we find in parents is quite high. And it's something that's treatable. So sometimes parents focus a lot on their child's recovery, and don't worry about them or as Tala's mentioned, or their other kids. So you know, thinking about that family unit and working together as a family unit is really important.
Simone: Thank you so much, Tala and Vicki, for being on this episode. We are now at the end of this. I just wanted to say, a really big thank you. I think there's some fantastic information, tips, advice that you've shared and the lived experience, and also your clinical experience, Vicki, that I know the community are going to learn a lot from. So we're really grateful for having you both on.
Vicki: Pleasure.
Tala: Thank you for having us.
Simone: If you've 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.
