RECORDED Fri 29 Nov 2024
SUMMARY KEYWORDS
stroke impact, childhood stroke, stroke awareness, recovery challenges, invisible disability, delayed diagnosis, mental health, school reintegration, self-advocacy, reasonable adjustments, teacher-therapist collaboration, fatigue management, sensory issues, peer support, educational resources
SPEAKERS
Megan Gilmour, Simone Russell, Hailey McKirdy
Megan Gilmour 00:00
This episode is proudly brought to you by the TPG Telecom Foundation dedicated to creating opportunities to improve the health, wellbeing and education of Australian communities in need.
Hi, I’m Megan Gilmour, MissingSchool Co-founder and CEO, and this is Live & Learn. This is the podcast that unearths insights at the intersection of health and education, building a powerful alliance to keep kids with complex health conditions connected to school from anywhere. The podcast is recorded on Ngunnawal land, and we acknowledge and pay respect to the traditional owners of this land and the land on which you’re listening.
Megan Gilmour 00:46
Welcome to our weekly webcast, a place to zero in on the interplay between health and education and to amplify the voices of those supporting school students to navigate their educational journeys despite complex health challenges.
And today on Live & Learn, we have Simone Russell and Hailey McKirdy with us. Simone is the National Manager, inclusion and priority communities at Stroke Foundation. Her professional background is in occupational therapy.
Hailey works as a lived experience consultant with Heads Together for acquired brain injury and as a disability support worker. She also sits on several advisory committees at Murdoch Children’s Research Institute (MCRI) and Stroke Foundation’s Lived Experience Advisory Group for the Childhood Stroke Project.
Welcome Simone and Hailey. We’re so excited to have you on Live and Learn.
Simone Russell 01:39
Thank you for having us.
Megan Gilmour 01:45
So today we’re here to talk about supporting school connection for students with complex medical and mental health conditions, and let’s dive straight into the questions.
So, tell us how strokes impact kids, and why it’s something every Australian needs to know and care about.
Simone Russell 02:08
Well, in 2023, over 45,000 strokes occurred in Australia, and that’s one stroke every 11 minutes. But most people think that stroke happens to older people, but actually stroke can and does happen at any age, and that includes in children and babies and even babies in utero.
So up to 120 babies and about 400 children have a stroke each year in Australia, and unfortunately, stroke in children is also among the top 10 causes of death. And really, more people need to know that stroke does happen to children and babies.
Megan Gilmour 02:44
They’re big numbers. I’m sure people will be surprised, just as surprised as I am to hear that, and definitely, you know, means that every Australian needs to have more awareness. So, I’m super pleased that we’re having this conversation today, especially about children.
So many people probably assume things about stroke. What’s the million-dollar question that you get from parents or loved ones when their child experiences stroke?
Simone Russell 03:19
Yes, look Megan I’m looking forward to hearing Hailey’s perspective on this as well. But I think the first question that would come to mind for families is, why did it happen, and what caused the stroke? And for mothers of babies where stroke happens in utero, a common question and concern was, was it something that I did? Was it my fault?
So, the second question following some of those early questions around the why, really are around recovery and prognosis, you know. How will the stroke impact my child, my child’s life, their development, you know, will they be able to walk and talk and learn and play and engage in life in all the ways that you know the child might want to and that the way the parent might have envisaged before the stroke. But I’m keen to hear Hailey’s perspective on this one as well.
Megan Gilmour 04:05
Indeed,
Hailey McKirdy 04:07
I know that a big question that I get is, what will recovery look and it’s kind of a really grey area for a lot of young stroke survivors, and that in regard to what recovery will actually look like for them.
When will I get better is another question that I get a lot in regard to stroke. But at the end of the day, stroke is a brain injury, and even though recovery is a long, long process and you still live with the side effects of stroke years on. So, I think the idea that, ‘Oh, you must be better now’, is a really big one that I get from a lot of quite green parents.
Megan Gilmour 04:54
Yes, and we’re going to get into a little bit more detail about that in a minute. Thank you for sharing that perspective. What’s the most important thing that you want them to know?
Simone Russell 05:09
Someone has a stroke at any age, and particularly in children and babies, you know, it’s sudden, it’s unexpected, and it is traumatic for everyone involved, and it changes everything, really, in an instant.
So, the child, everyone around them is impacted, the family, the parents, and it can be really challenging having to navigate the system. So, the health service system, the support service system and the education system as well, and also, I think for parents and families to stay strong for their child and for the greater or broader family.
I think the key message really is there’s hope that people and Hailey is perfect example of this, recovery is possible. There is good support and information out there that can make it easier. And while there are gaps that there are people like the Stroke Foundation, like Hailey, like yourself and MissingSchool’s organisation and many, many other organisations trying to make it easier for families to navigate life after stroke.
Megan Gilmour 06:09
Hailey, do you want to add anything to that?
Hailey McKirdy 06:12
Yes, just touching on what Simone said, I know just post stroke, in that very traumatic period, and that it’s very easy to think that it’s all consuming, but it is actually very, very possible to have a fulfilling life post stroke as well, which is something that I probably want every parent of someone that survives stroke to know, that it’s not always going to be like this.
I know during the therapy stage, there’s quite intensive therapy just post and it’s very easy to get caught in that, like, environment. Just thinking this is how it’s going to be. But it’s definitely not the case.
Megan Gilmour 06:57
Yes, I love hearing this, because in the number of times I’ve done these calls with different organisations, it’s remarkable how similar those points are to those two questions, very similar, which is, I guess, about you’re not alone, but also that this doesn’t have to define you, and there’s a person that’s sitting at the front of all of that – a complex person with all sorts of hopes, dreams, wishes and for their life and not being defined by the diagnosis or the health condition.
We’d love to know if you’re willing to share what brought you into the world of stroke?
Hailey McKirdy 07:48
Do you want to take this one?
Simone Russell 07:50
Sure. I’m happy to go first, as mentioned in the bio. I have a background in occupational therapy, and I spent many years working as a clinician before joining the Stroke Foundation over a decade ago, and worked as a clinician in acute and rehabilitation, predominantly in neurology, but also more specifically in stroke.
And while I was studying, I wasn’t studying occupational therapy at the time, but my second grandfather that had the stroke – so both grandfathers on my parents’ side experienced strokes, but particularly impactful was my dad’s father. When he had his strokes, he had a number of strokes, he had the very traditional one-sided weakness. He had the Aphasia, so the communication difficulties, and, you know, significantly reduced independence after his stroke. So that definitely spurred me on to work in neurology and work with survivors of stroke and their families.
Yes, and this really is, I think, the driving passion behind why I do what I do at the Stroke Foundation. I spent many years working on stroke Foundation’s helpline, which is our 1800 787 653 it’s a national helpline staffed by health professionals. And you know, that’s been an incredibly rewarding role, and I have been able to, you know, be privileged, really, to hear from a lot of people in the community impacted by stroke who come to stroke line for support, information and advice.
I work closely in more recent times in project work, co designing resources and solutions to some of the gaps that exist, and that’s really where I’ve come to meet Hailey. So yes, I currently support our childhood stroke coordinator and lived experience Advisory Group team of survivors like Hailey as well as the parents in that group. So yes, that’s a little bit about my background to what brought me to stroke.
Megan Gilmour 09:43
Thank you for sharing that, and we’re so fortunate to have you. We don’t always get to control what happens in our lives or the lives of our loved ones, but we can respond, I guess, and that’s what I’m hearing here.
Hailey, would you like to share what brought you into the world of stroke or strokes?
Hailey McKirdy 10:05
Yes, sure, just one for me, but so my experience of stroke is through lived experience. So, I had my stroke when I was six, when I was just going to bed one night. This was years and years ago, actually, before the Stroke Foundation was actually formed.
So I’m really proud to be a part of the Stroke Foundation childhood lived advisory group, because I know it’s something that’s definitely raised awareness in regards to that it does happen to children and that because it actually took me two weeks to get the diagnosis of a stroke, which I know, getting a quick diagnosis is really key to a full recovery.
But I’m really excited to be a part of this podcast, because the trajectory of my education, and that was very sort of, I would say, grim, and my parents were encouraged not to send me back to school, that I probably wouldn’t get too far beyond the intellect of a six-year-old.
And throughout the years, I’ve found that attending school is so much more than just the education, it’s also the social aspect and inclusion and everything like that. So, I’m really proud to say that my parents did send me back to school, and that it did work out quite well, and just kind of sort of be there for that kind of, for those parents that are kind of sort of umming and ahhing.
And that, I think all medical advice needs to be taken with a grain of salt as well. And it’s funny, what determination can actually get you, how far it can actually get you in life.
Megan Gilmour 11:59
Yes, that just really got me in the heart. Hailey, yes, the lived experience and the knowledge and awareness that that gives you, because you’ve walked the journey, and then to be able to share that with others and make life different for others, like children now, to hear your voice and for families to hear your voice around this, and I’m hearing, it’s a show not tell moment here.
You’ve actually said that you benefited from remaining connected to school, and that that took a lot of courage and determination. So, we acknowledge that, and thanks so much for sharing your story with us. Its people like you who really do change the world. Here you are doing this amazing work, using your own journey to be supportive and beneficial to others. So, from our hearts to yours. Big, huge, thank you.
Hailey McKirdy 13:05
It’s awesome to be here.
Megan Gilmour 13:08
In knowing all that you know, what’s your biggest hope for kids with stroke, their families and loved ones when navigating this journey?
Hailey McKirdy 13:19
The returning to school journey, or just the journey in in general?
Megan Gilmour 13:23
Anything you want to share with us about that.
Hailey McKirdy 13:27
I think it’s amazing what neuroplasticity can do for especially a small child, and how much they can actually bounce back from that, and what they can actually achieve in the years post. I know that it’s challenging, and it might not look the same as their peers and all of that, but it’s definitely possible to achieve what you want to achieve.
And returning to school, I think sort of is that – it’s an important part of, like, childhood, like, you know, for the social aspect and just communicating with others, just gaining those communication skills. I know at the end of the day, in the beginning, it’s not always possible, but I do believe in returning to school is definitely a key part in recovery as well.
Megan Gilmour 14:24
I love neuroplasticity and anything about it that young, developing brain, even older brains, you know, exposure and stimulation to positive learning and fun and play and all those things it means to be a human and especially for kids, that’s a real opportunity. Thank you.
Simone, would you like to add anything to Hailey’s response?
Simone Russell 14:57
Yes, thanks Megan. I guess I was thinking about this quite broadly. So, you know, my hope really is that every baby or child gets access to that timely, evidence-based treatment that Hailey was mentioning before, so that the stroke is picked up early. We know when strokes are detected early, and you get access to treatment early and rehabilitation early, you have better outcomes. So that would be one of my first hopes.
But [also] that the families and child have a treatment team who provides clear communication and good support, and that families are given good quality information – like our Family Stroke Journey, which is a booklet for families navigating childhood stroke – and that they’re linked into really good peer support options, like Little Stroke Warriors, which is one of our peer support for families.
And from there, I guess, they have adequate access to and funding for rehabilitation and the support that they need, and that that navigation of the education system is as smooth as possible. And you know, I think ultimately a world that is inclusive, where kids experience stroke are included, they’re supported, they’re loved, and they have those opportunities to do the things that they want to go on to do, just like other children.
Megan Gilmour 16:08
Yes, amazing. And you’ve mentioned there your helpline, and also these resources that are so important. So, I just flag those up again, and when we get to the end, we’ll share where to send listeners if they want those things.
What are some of the common and perhaps frustrating public misconceptions about stroke and how have you seen this impact families?
Simone Russell 16:38
Do you want to get to it first Hailey? I don’t mind. I’ve got some ideas as well, but you’re welcome to go first.
Hailey McKirdy 16:43
I think because stroke can be an invisible disability as well, and the fact that it’s not always something that can be picked up just by looking at the child, people automatically assume that the side effects of stroke shouldn’t be there, and they assume that they don’t have any issues moving forward, or that they’re fully recovered.
I think that that’s kind of sort of a big misconception, as well as a lot of others in regard to those that aren’t as physically capable, just get painted as uneducated and incapable of learning, which was kind of sort of my experience when I first returned to school. But that isn’t the case. It’s really a wide spectrum of possible side effects that a child’s left to deal with post stroke.
And I think it’s really important that you don’t base your experience of working with one child with a stroke and kind of sort of use that as a template working with others, because it is such a broad spectrum, and there is such a differing, like education tools and reasonable adjustments that are needed. It’s actually kind of sort of a red flag for me when someone’s like, ‘Oh, I’ve dealt with someone with a stroke before I know what I’m doing’. That kind of sort of indicates to me that you’re probably going to need to educate them.
Megan Gilmour 18:20
Yes, yes. So while it’s, you know, it’s got a name, ‘stroke’, every person’s experience of that, and the side effects or the ramifications of stroke for each individual will present differently, and therefore knowledge about it is critical, but also understanding dealing with an individual and enabling that individual journey or experience to lead the way in terms of what adjustments and other things can be put in place. Simone?
Simone Russell 19:02
I think I probably cover most of what Hailey shared. So, you know, she’s spoken spoken about invisible disability. It’s a really common misconception, you know, someone looks fine, but yet there can be significant fatigue, which obviously has a huge impact on education and schooling.
There can be vision impairment. Again, some people will never know that someone has a vision impairment, particularly some that are linked to stroke, where someone has half of their visual field that just doesn’t exist for them. You know, they may be utilising their own strategies, so someone would never ever potentially even know that that was a thing, unless it was obviously part of their learning plan. And, you know, was shared with people out in the community or in the school environment.
I think it’s about 50% of children will have long term neurological impairment after stroke. And so, I think similar to what Hailey shared around this sort of misconception of, well, number one, stroke happens. ‘Does stroke happen to kids? No’. It doesn’t only happen to older people. Is the first challenge you come up against, and then the second challenge of, ‘well, okay, so you’ve had a stroke, well, you’ll need to go to a special school’. We hear that a lot. And Hailey’s example of, well, you know, maybe school is not an option at all.
So, yes, I think there’s lots of different misconceptions. And Hailey touched on the perfect one of all strokes kind of being put into the same basket. The brain’s complex. It does everything, it controls everything that we do, and so depending on where someone has a stroke, it will determine what the impact of that stroke is, and that’s what makes each stroke so unique.
And yes, as Hailey touched on, it’s really important for teachers in particular, to be aware that not all strokes are the same. Each stroke will present differently as well.
Megan Gilmour 20:48
How many Australian children and youth are living with post stroke right now?
Simone Russell 20:57
It’s a great question. It’s one we don’t have a clear answer to, Megan, you’re probably not surprised at that. You know, as I said, we know that there are about 128 babies and about 400 children who have a stroke each year. But in terms of prevalence, it’s more challenging and accurate data is something that we’re still working on. You know, the NDIS data that’s available shows pretty low numbers. And you know that could be potentially due to the way it’s being reported, or the presence of other health conditions.
But certainly data in childhood stroke is something that has been a key gap that we’ve been working on, and certainly some of the research that’s happening at the moment that Hailey’s also been involved in with MCRI is looking at getting that data through the pediatric acute code stroke study, so looking at getting some clearer data on incidents, but also us looking at other data in terms of rehabilitation, in terms of prevalence. So yes, much more work to do in terms of the data.
Megan Gilmour 21:57
Yes, but it sounds like it’s not a low number if that’s happening year on year.
Simone Russell 22:04
That’s it. Yes. You can do some basic maths and assume that there’s up to 1000s of kids with stroke, yes, in the education system, absolutely.
Hailey McKirdy 22:21
I know, for example, that there were another two children that suffered a stroke in my primary school alone. So that kind of, sort of gives you a number of how many are in each school?
Megan Gilmour 22:31
Yes, yes. And I guess with that data too, we’ll know whether it’s happening more often across time, or, you know, if the prevalence is increasing as well.
But yes, I think we’re all in a similar circumstance where we all need better data. And thankfully, we’re living in an age and a time where this is absolutely possible, given our technology and so on.
Simone Russell 23:00
I think as adults we are much further ahead. So that’s really been where this shift to childhood stroke as a priority has been really important. So, you know, kids that are having strokes are not left behind, even from the data and the research perspective.
Megan Gilmour 23:14
Yes, and this one might sort of tie into that – you’ve touched on. It is there a risk of delayed diagnosis, or are most cases picked up easily?
Simone Russell 23:23
I think Hailey’s perfectly touched on this with her personal example, which I’m sure she’ll talk more about. But you know, we hear far too many stories where there’s a delayed diagnosis, and in some cases, it can be many months, not just weeks, where stroke isn’t picked up.
So much of this is due to that lack of awareness of stroke in children, and that’s unfortunately even in health and medical professions, there isn’t enough awareness, and also, obviously in the general public. But it’s certainly something we’ve been actively working on, and a particular concern that was raised by Hailey and the Lived Experience Advisory Group.
Our project initially was looking at resources and developing and delivering co designed resources to help families and kids navigate childhood stroke. And Hailey and the group were really, really strong in saying, but hang on, there’s just not enough awareness out there, so we have to work on this. And so yes, as a foundation, we’ve really taken that on board and are doing our best to try and raise that awareness.
And for older children presenting with stroke, it can present in a more similar way to adults, which can help with the diagnosis. So, we use an acronym called FAST, which you may have heard of. So, F is for face checking, has the face drooped? A is for arms, can the arms be raised? Usually there is a weakness on one side and arms are more affected than legs. S is speech, is it slurred or confused? And T is time, it’s critical. You need to call triple zero. There are treatments available that, if you get to hospital quicker, you can potentially receive.
But other signs of stroke in children can be things like weakness, numbness, not just in the face and the arm, but also the leg, usually on that one side, but sometimes you get both limbs involved, or both arms and legs involved. Vision changes, dizziness, poor coordination or balance, severe sudden headache. You know that can come with nausea and vomiting as well, but also trouble swallowing or potentially drooling. Seizures often comes with that weakness and loss of consciousness is also a possibility.
For babies, it’s slightly different, and that’s where I think some of the diagnosis challenges come up. And for babies, it’s usually in newborns really severe or extreme sleepiness and seizures. And then for more developing babies, you might see that weakness on the one side or holding the hand in a fist, or that preferring to use one side before 12 months of age, which is quite unusual, and delays in some of those really big early milestones, like rolling, sitting, crawling and walking.
So yes, part of it is that lack of stroke awareness, and part of it I think also, is that it presents a little bit differently in babies. And there can be other mimics, stroke mimics, or things that, you know could be a stroke, but could also be something different. So, yes. Hailey’s got, I think, a really good example of just that challenge with you know, timely diagnosis.
Megan Gilmour 26:17
Yes, Hailey, do you want to add anything?
Hailey McKirdy 26:20
Well as Simone was explaining earlier it’s a part of the stroke FAST message, why time is so important, and that because they can actually intervene and lessen the amount of damage to the brain, which is really important, not for recovery, but so much in regard to, like, how much damage is actually done. So how, how much like side effects in prevalence is going to be there post rehab and all of that. It just makes it a lot a lot easier if it’s picked up earlier.
Megan Gilmour 26:54
Yes, and so that probably leads in neatly to the next question. Hailey, what kind of complications do kids with stroke face?
Hailey McKirdy 27:05
Really it can be a wide variety of things, anything from, for example, speech is a really big one. Understanding written writing is another one that I know that I personally suffer with. Fatigue, obviously the physical side of things, so the one-sided weakness, muscle spasticity and possibly dystonia, like that side of neglect, and also like sensory issues as well, like in regard to sight, touch and hearing.
Megan Gilmour 27:46
It’s a lot for a young person to deal with.
Hailey McKirdy 27:51
It is a really overwhelming time for the first few weeks. I know in my case, especially because I wasn’t sure what was going on, and it was quite overwhelming for my family and siblings as well. So, I can understand during that high stress period, it would be quite overwhelming.
Megan Gilmour 28:15
Yes. Simone, you can swing back in in a moment if you want to add something to that. I just wanted to pick up something there that Hailey’s saying. It’s the next question, which is, how are siblings and peers of kids with stroke impacted, and what should families be across?
Hailey McKirdy 28:37
I know that my siblings were very confused and didn’t really understand what was going on for the first little bit, especially for my older sister who witnessed me having the stroke, it was quite a traumatic thing that she still talks about to this day as being quite a full-on childhood experience for her.
But I think trying to explain to siblings the fact or the reason why things are so different, or like, why mum and dad aren’t there for you in the same capacity any more is quite a hard thing for them to kind of sort of understand and take on. And also, the fact that it is such a sudden thing as well, that most of the time, I know that siblings, of like, say, under the age of 18, really struggle to handle.
And in regards to peers, and I know that a lot of young people with stroke sort of struggle with personality changes, and kind of – I know that this is going to sound a bit funny – but kind of sort of go through an identity crisis, and I think that’s something that a lot of peers just don’t, can’t quite understand, or aren’t at that age where they can quite wrap their head around why.
Megan Gilmour 29:56
Yes, what that is, yes. Some really critical points there. And we know that there’s, you know, a neurological effect. Just want to check if some of the complications involve mental health issues as well.
Simone Russell 30:18
Absolutely, they can. Anxiety and depression are common after stroke. And you know, the brains involved in this stroke, obviously, but also, you know, depending on the impact of the stroke itself, you know, if there has been a significant loss of independence and changes, that takes adjustment. And, again, depending on the level of support and information, and how a child adjusts after their stroke, absolutely, mental health is a factor.
And look, I think, Hailey could speak more to the kind of journey, I guess, of acceptance and that identity piece is something that we hear a lot just you know, having a stroke as an adult, where you may already have a more formed self, sense of self and sense of identity. You know, a child is such, your brain is still growing and developing, and particularly in those teen years where you are having to actually work out, who am I? You’re doing all of that with the complication of stroke on top of it, as Hailey said.
So yes, it definitely can be difficult for siblings and peers, I think, to understand. Absolutely. And, you know, I think coming back to the siblings and peers’ question, sometimes they can worry too about the child having another stroke. And in some cases, there can be a cause which might be an increased risk of having additional strokes, or may lead to that increased risk ongoing.
So certainly, there can be a fear is, is this going to happen again?
And in some cases, also that is, is this going to happen to me? You know, as people start to become more aware of stroke in kids, naturally, sometimes peers and siblings can think, well, is this going to happen to me too?
So, yes, fear and worry can be a big factor, also for family members, but certainly for the survivor of the stroke themselves. Yes, navigating life after a stroke can be really, really challenging, so naturally, it comes with mental health challenges.
Megan Gilmour 32:14
Yes, and moving to school now, and I’m sure we’ll pick up some more of this with Hailey as we get into this part of the conversation.
Another data question, what is the current population of school age children with stroke, and how accurate is this? Is the data tracked? I think you’ve answered this question, but please feel free to add more if you wish.
Simone Russell 32:43
Look, I would say it’s something that is probably not overly accurate and something that we, you know, we do need to get better at tracking – we’re reliant on other data sources, current data sources. So, it is something that I think there’s always more room for improvement on. Absolutely, yes.
I don’t know if you’ve got anything to add Hailey, from your experience too. I know you’ve been doing a lot in the education space, but, you know, I think NDIS is one of the key ways that we would track currently as well.
Hailey McKirdy 33:14
Yes, I’ve got to agree with Simone. There isn’t really any reliable statistics that we can pass on currently.
Megan Gilmour 33:21
Yes, and you’re not on your own there. This is across the board. We’re hearing this a lot, and even where there is population prevalence data, the data about the school age population with a certain condition or health circumstance is not often clear.
And I think the other thing about the way that data is captured too is odd when we want to look at a whole school life, so we want the data set from age five to 18, but then we have data sets up to the age of 14, and then it splits off into another sort of larger cohort data set. So, it’s also hard to get that school age number, but we hold out hope.
Do kids with stroke currently miss a lot of school? And if so, why?
Simone Russell 34:22
I would say yes, they can and do often in the early acute phase, again, depending on the extent of the stroke and how much treatment, acute treatment, someone might need, and also the rehabilitation and how much rehabilitation someone might need.
But you know, in some cases, kids can be in hospital for long periods. That does, again, vary, like Hailey said, every stroke is different. So, someone may actually have a stroke diagnosed in the community and may not ever go into hospital for their treatment and rehab. They might receive it all as an outpatient.
But I would say definitely in that acute phase, there’s usually, you know, multiple medical and therapy appointments, so attending physiotherapy or occupational therapy, going back to the neurologists, speech pathologists, you know, the whole sort of treatment and recovery phase.
There’s usually a graded return to school for most kids, I would say, depending, again, on the impact of their stroke and fatigue levels as well. But usually those medical and therapy appointments can be ongoing for a number of months and years, in some cases, for some kids, this might reduce over time, but then depends as well. If there’s other health conditions or complications from the stroke, then sometimes there’s additional time away from school at different points as well.
Post-stroke fatigue, which I’m sure Hailey can speak too much more, that can mean significant time away from school, you know, on a consistent basis as well. So, kids needing to go home early to rest, kids not being able to go to school because of that fatigue may be needing more time off, but yes, over to Hailey, I think she’s going to be really well placed to answer this one.
Hailey McKirdy 36:03
Yes, just touching on what Simone was talking about in regard to fatigue and that acute rehab stage. But in regard to those that do suffer from the physical effects of stroke, they might need to go in for surgeries, which could mean another length of, like, rehab, or, you know, recovering from surgery.
Just in regard to leaving school and that, it might happen in waves, or, I know, for me personally, like, depending on – obviously touching back on mental health and that, when I’m suffering from poor mental health it definitely happens in waves, and my fatigue has sort of become very much more prevalent.
Megan Gilmour 36:53
Yes, and fatigue has been one that’s been mentioned, and that neurological impact, I guess, taking in information, processing information, you know, sensory experiences in the school could potentially lead to, across the whole school life, there being more challenging in dealing with those things. And I guess could lead to needing more breaks and time away for recovery and those sorts of things. Would that be an accurate assessment?
Simone Russell 37:35
Yes, absolutely, yes.
Megan Gilmour 37:38
And then the mental health, sorry. Hailey?
Hailey McKirdy 37:41
I know that a lot of children with strokes use masks.
Megan Gilmour 37:53
I lost your audio for a moment. Could you just repeat that?
Hailey McKirdy 37:55
Oh, yes, sorry. I know that a lot of young people with strokes are also masters of masking. This is what I’ve gathered from the community of young stroke survivors and that masking their issues in regard to like sensory input or loss of use of a limb, it is quite fatiguing as well. So that needs to be factored in.
Megan Gilmour 38:23
Ahah. And this term masking, I think, is a really important one, the way that children would be living with their experience and just getting on with it and making their own adjustments over time in a way that they may not even have awareness of it themselves, is just overcoming those different challenges, which – we should sort of hook back to this – increase perception that there’s not a problem, and that invisible nature of this would be compounded by those adjustments and that masking as well.
So that’s going to create more, perhaps more expectations, or more unrealistic expectations in the school environment than children with stroke might be able to manage.
I just want to put in a plug, as I do at this point now, for any missed school, is that we are working on and really driving hard through the concept of learn from anywhere, so that when students with a health circumstance that means they can’t physically attend school, or they’re missing a lot of school for treatment, that we can use two way digital connection into the classroom, just like we’re doing now, even for those students just to watch if that’s the level of participation that can take place in that moment, or to be able to keep up with their learning.
But certainly, as Hailey’s pointed out, that critical aspect of social connection and creating shared meaning with classmates and in school communities so that when you are there, you don’t have sort of huge gaps, and the anxiety around those to manage and school can continue from wherever you are.
So that is our goal. That’s what we’ve been working on. We believe it’s completely possible, because we saw it happen through COVID in a global health crisis, so we know it can happen, and we’d just love to see it applied to personal health circumstances where there’s a desire to be at school but it’s impossible physically.
What are the critical times in a kid with stroke’s school life?
Simone Russell 41:02
Yes, I think starting or returning to school after stroke is obviously a really critical time, and that depends on the age of which someone has a stroke. So, you know, the babies having strokes obviously haven’t started that journey.
So definitely still a really big milestone and critical time for kids and families. So, thinking about what school – selecting and then commencing a new school is a really big, big time for families and the child. Hailey can certainly speak to transitioning as well, back to, I believe, a previous school I think Hailey, or you hadn’t quite started, I think you were six, yes?
So, transition periods like that are really critical, whether it’s moving from preschool years to primary, primary to high school. But also, I think we hear it’s a really critical point, even those last few years, the senior years of schooling, when you start to move into the more serious sort of exam environment as well.
And you know, if you want to think beyond high school to university, thinking about is further education beyond high school, something that the child is interested in and wanting to pursue and thinking about what that might look like as well. But yes, I think Hailey again will have lots to add here.
Hailey McKirdy 42:10
Yes, obviously, like any transition or change in setup is really, really crucial, and I think should be definitely something that is focused on, possibly years ahead of the actual transition itself, where possible, obviously not returning to school post stroke, because it’s not something you get a year’s heads up on, really!
But regarding that, and I think also becoming sort of self-aware is a really important stage as well, I know that that’s where, like, my mental health definitely took a dive, because I wasn’t self-aware enough at the age of six to comprehend a lot of those things I experienced. I had to play catch up a little bit in regard to several of those things and sort of becoming self-aware and body conscious, because when you’re six, you don’t really pay attention to that kind of stuff.
So, I think definitely intervening in regard to mental health and mental health supports at about – depending on the child – it could vary – but I think as soon as those questions start to arise, it’s definitely really important to intervene in regard to mental health as well.
Megan Gilmour 43:31
Yes, thank you for that, and it draws out an important point too, which is, you know, between ages five and 18, there’s a lot of development milestones that children pass in terms of just transitioning from being a child to a teen to a young adult. And it’s the, you know, it’s all the major milestones along the way there that are happening in the context of stroke and a lived experience with stroke.
So, whilst there’s ones relating to the health condition, we also need to recognise those vital milestones and developmental things that these kids are going through just because they’re human and that, you know, there’s this other layer added on to that.
And we also, just coming back to your mentions of transitions, we also count the going in and out of school for treatments and downtime and surgeries and all of those things as transitions as well, because a day can be a long time at school and not to be there and being that person who is having to re-enter all of the time.
And I also just wanted to add in that one that you said earlier, that identity crisis period of, I guess maybe I’m hearing it incorrectly, but a little bit of rallying against just being defined by your stroke experience, and really wanting to be seen as who you are, but at the same time trying to work out who that is in those vital years. So, did you want to add something? Hailey,
Hailey McKirdy 45:21
Hailey, oh, no, you finish, please
Megan Gilmour 45:23
I was just going to move us on to the next part of that, which is, what should families and schools be prepared for it at these different times?
Simone Russell 45:37
Yes, I think if someone hasn’t yet started school, finding the right school for that child is really a good starting point. And some of those things might be looking at the physical learning and social environment, you know, the values of the school, the general feel of the school if you’re doing tours.
But you know, considering also the leadership and the teaching staff and the skill sets there, the importance of advocating as well for your child and their right to education and adequate support. So, I think equipping and preparing yourself for that, whether your child hasn’t yet started and is about to start, or whether your child is returning to school, is really important.
And we also have a podcast, so I’m going to do a shameless plug that we’ve got two episodes in particular that touch on some of this topic for people that want to go deeper. So, we have a podcast on school inclusion and also invisible disability, and you’ll hear Hailey on the school inclusion podcast, and she shares a lot more depth into, I guess, her experience of navigating school. So yes, I think you know, finding that right school, and that can be also potentially moving schools. And I think Hailey’s got a lot to add on that too.
But you know, looking at your options, whether it is at a transition point or whether it is starting at school for the first time, making sure that you can, you’re empowered to actually change schools if you feel like you need to, and getting that right fit is really important.
I think that preparedness around that open communication with the school from the start, having good access to information and support, whether that’s peer support, the therapy team, the education support. And I think, we kind of touched on it, but a little bit, but being aware that as your child grows and continues to recover, needs might change.
And, you know, final years of schooling, for example, with exams, there might be different needs to what they were in in the few years prior to that. So, yes, I think we’ve already touched on, you know, what are reasonable adjustments, but thinking about that at different points, particularly when you’re getting into sort of the exam years.
But yes, you know, also, considering does your child need to be reassessed at various points by the therapy team. So, you might have a few years where you haven’t been your child hasn’t been receiving regular therapy. They may have sort of transitioned out of needing consistent or regular therapy. So, thinking about at different points, you know, do they need reassessment by neuropsychologist or by the occupational therapist, speech pathologist, etc.
You know, I think that preparing for schools is that linking in early with the school counselor and pastoral care, etc., as well. But, yes, I’m sure, look, Hailey would have so much to add, I think, on this particular question, based on her previous experience, her lived experience of schooling.
Megan Gilmour 48:20
Over to you, Hailey,
Hailey McKirdy 48:23
I know it’s really, really important to have your documentation together in regard to just educating the new teaching staff and all of that. And I’m actually a part of – I’m going to do my own shameless plug here sorry,
Megan Gilmour 48:37
Please do.
Hailey McKirdy 48:38
But I’m currently creating this module for teaching staff, and that’s called Teach ABI which definitely touches on a lot of the things that young stroke survivors have to live with, which is really, really important.
I also know that my mum was really, really big on me self-advocating, so I just, I know it’s something that I’ve carried with me throughout my entire journey up until adulthood, but being taught those skills in self-advocating for myself was really, really key and important in regard to just navigating life post stroke.
I also know something that my mom did, that I would probably advise most stroke survivors to do, would be to actually travel to the location where you’ll be studying and figure out, uh, potholes in in that and, um, see if you can find workarounds.
Megan Gilmour 49:40
Yes, um, your mom sounds like an amazing person. And I, I know from my own journey with my child, it’s so, so easy to want to wrap your child in cotton wool and just, you know, get in there when somebody’s doing something that you know doesn’t feel right. But I love that – and we can see it now in the person that you are – that self-advocacy, the way that that has built your advocacy for community as well, and your own, your agency, so vital in our identity.
So that’s a point I’d really love to encourage here too, for parents listening, just building that self-agency in young people and enabling them to be their own advocate on the spot. There’s nothing better than that.
I want to also stick in a plug here for the Disability Standards for Education, a national regulation that applies to every single school and education institution in Australia, which makes it a super powerful regulation. It sits under the Disability Discrimination Act, and when listeners have heard us talk about adjustments and things like that, it’s the Disability Standards that enables adjustments to be designed and developed for young people who need them to have equality of opportunity in their school environment.
So, the standards enable everything from being able to choose your school of enrollment and be able to stay enrolled in that school throughout your either medical or disability journey, and to learn alongside peers, to be able to have assistive devices like two-way digital connections to enable access to the classroom.
This standard already enables that to take place for a child who’s not in the classroom, I guess, using technology like a wheelchair ramp to get in there, and, you know, to be able to be free of harassment and to be able to get additional supports and obtaining access to the national curriculum on an equal basis to others.
So, you can hear there that it’s a really important standard to join and connect the school up with in relation to the health circumstance, to just ensure that there’s a quality of opportunity there, and those critical adjustments, which the school can get additional resourcing to apply, so there’s a virtuous cycle there.
And you know, those adjustments can enable all sorts of things, including additional time, rest periods, as I said, technology and assistive devices, there’s a whole range of things. So, we just want to do a massive plug there for that.
Are there any other comments you want to add to the challenges and vulnerabilities facing kids with stroke at school?
Simone Russell 53:00
I feel like we’ve probably covered many of them, you know, in some of the other questions. So, time off school for therapy. Sometimes other kids might be thinking, well, that’s not fair. Why are they getting out of school? And that can bring, you know, challenges with peers.
Fatigue we’ve mentioned that can be a really huge challenge in school. Sensory overload we’ve touched on, I think Hailey’s touched beautifully on some of the thinking changes, attention, concentration, you know. Also speaking and communicating. So, aphasia is also something that can be present for kids after stroke. So that difficulty in communicating, writing, reading. You can have difficulty in receiving the information, so receptive aphasia and also expressive, so getting the words out.
The need for more time, I think, which we’ve probably touched on a little bit, but that’s really common. You know, needing more time to process information, to carry out activities, more turn up time for learning, for communicating, and just to do things in general, and things might need to be done differently as sort of we’ve touched on, whether that’s with aids and equipment, or whether that’s just doing things in a different way that works for the child.
And we’ve talked a lot, and you’ve beautifully covered some of the reasonable adjustments, but I think some of the challenges are that teacher and the therapy team working closely together that doesn’t always happen well, and you’ve just touched on the standards beautifully as well.
And you know, some families will say, oh, I didn’t know that the therapist could come to the school. So, it is actually having that awareness of the standards and being aware of what you can advocate for if it’s not happening in school. So that’s definitely something I think worth mentioning. And everyone understanding what those reasonable adjustments are and working really well together.
But you know, I think Hailey will probably touch on some of the feelings, in terms of the challenges. Feeling different, feeling left behind, feelings of isolation can be present. But I also really want to touch on the positives as well. There are huge opportunities for feelings of success and achievement inclusion when education is done, right, which I think, you know, Hailey is a brilliant example of. So, over to Hailey.
Megan Gilmour 55:08
Yes. I’m going to ask Hailey this next question on the back of that. And I did also want to point out that Hailey mentioned this earlier, and that is having a documentation, so that documentation is also going to be critical for having any absences seen as approved absences, as opposed to unexplained absences, which can go into now currently into that school refusal scenario and that type of thing.
So, documentation is super helpful. So, Hailey, on the back of hearing from you a little bit more on the challenges and vulnerabilities, I want to just add to that. Is what’s happening at school enough currently and how would you see these challenges and vulnerabilities that you’re going to share if you’d like to need to be addressed in a better way at school?
Hailey McKirdy 56:14
I’m not going to lie; I am a little bit older than school age now. I’m 31 but I know that things have gotten significantly better in regards to relationships between therapy teams and teachers, from what I’ve heard so far, but I guess in regards to vulnerabilities in that sometimes young stroke survivors can feel like it’s all too overwhelming, and just sort of not getting off on the right foot in regards to teacher, student relationships and therapists, it’s really all too easy for them to just say, ‘Oh, it’s all too hard and just throw the towel in’.
But I think it’s also really important that you know your rights, that you know the standards, and it’s okay for you to go to the teacher and say, ‘Look, I deserve better, and this is what I need, and these are my rights’. And I think that kind of comes down to learning to advocate for yourself and do that in a positive, friendly manner. I think that’s a really important thing as well if you’re going to have those hard conversations.
Megan Gilmour 57:22
Great advice. And what I’m hearing in that is, ‘Hey, everyone, don’t give up on us.’
Hailey McKirdy 57:31
There’s a way around every issue really.
Megan Gilmour 57:33
Yes, yes. And I see through what you’ve shared about your own journey, and here you are being an amazing advocate, as I said, in the community, is just such an inspiring basis for us to look at and know that this is absolutely possible.
Is there anything else you’d like to add about your school experience or school quality of life Hailey that we’ve missed here, or maybe haven’t delved into enough?
Hailey McKirdy 58:07
I guess kind of when it comes to challenges, and that I do suffer from hemiplegia as well. So, having that open relationship with teachers is really important as well, and figuring out potholes and like in regard to getting from class to class.
I went to a Catholic all-girls school in the city that didn’t have any type of lifts or accessible anything, really. And at the end of the day, it wasn’t their fault, it was a heritage listed building, but it was what worked for me. And just having those conversations if I’m five minutes late to class. This is why, in kind of just creating that open and honest relationship would have been quite helpful.
Megan Gilmour 58:51
Yes, thank you for that. Simone, is there anything else you’d like to add that you think we may have missed about school quality of life?
Simone Russell 59:01
No, I don’t think so. I mean, in terms of addressing the challenges, I think yes, as Hailey mentioned, we have come a long way, you know, whether that’s from the standards, NDIS, you know, school support, and certainly in Victoria, the disability inclusion funding and support has been a really big help for some of this that we’re talking about.
But also organisations, you know, there are a lot of us out there, like yourself, like Heads Together for Acquired Brain Injury, which, you know, we’ve been working with, and Hailey works for the Association for Children with a Disability in Victoria, you know, Hailey mentioned the Teach ABI project as well, led by MCRI – Murdoch Children’s Research Institute.
So, I think you know, as a group, I think this is so important. I think all of us working together. And as you’ve said, there’s so many commonalities across different conditions. And I think the more of a united force, we can keep speaking to some of the gaps you know, the better everybody will be.
You know, we know teachers have so many demands on their time. But yes, as we’ve covered, a stroke is quite unique to the individual. And yes, with some education, we can really empower teachers to feel like they have the capacity and the skills and the knowledge to not only help make their job easier, but also obviously improve the outcomes for kids that have had strokes in terms of navigating education.
Megan Gilmour 1:00:27
Yes, perfectly said, and we do want to shout out to all the teachers out there.
Simone Russell 1:00:32
Absolutely
Megan Gilmour 1:00:33
These conversations are to support teachers who do have an incredibly full job already. And you know, maybe one day, we can cross out the name of all of the different things that cause situations like this in school and actually highlight just what you need to know to teach this child in a way that’s going to enable them to have success, and what you need to be across in terms of that individual person.
I know that we won’t get into it now. I know that a lot of teenagers, in particular, don’t necessarily want anybody to know what’s in the background there, and that’s perfectly fine. So just the way that we, you know, together, as you say, create this knowledge and information that can enable the young person to be a learner, a student and a student of life, is going to be so helpful.
In closing, call to action. We’ll start with Hailey. Hailey, what’s your call to action for people experiencing stroke, young people experiencing stroke in seven words or less?
Hailey McKirdy 1:01:52
I think it would have to be take it day by day and just know that any challenge is – you can overcome given a little bit of creativity.
Megan Gilmour 1:02:05
Love it. Thank you. And what about you? Simone,
Simone Russell 1:02:09
Look, I’m going to have to say, children have strokes, so educate yourself. I really think, you know, the more that we can get that awareness out there. Yes, the better. But, I mean, I think Hailey and I could say a lot, couldn’t we, depending on who’s listening.
But yes, I think you know, children have strokes. Yes, just understand that and learn more about what that means, whether it’s the signs of stroke, knowing the signs of stroke, but also knowing how to support kids after stroke is really important too.
Megan Gilmour 1:02:36
Yes, and I just want to give a shout out to Hailey and Simone today for sharing your extensive knowledge and your personal experience, and your personal experiences as well. And a shout out to Stroke Foundation Australia, and you can find them at www.strokefoundation.org.au [htttps://www.strokefoundation.org.au] where you can find resources, assistance, a helpline, and all sorts of other good things that have been mentioned on today’s call.
And go there, give generously, and know that you’ll be helping, not only a range of Australians, a lot of Australians, as we’ve heard, who’ve experienced stroke and live with the consequences of that, but also importantly, as we’re talking about today here, children who’ve experienced stroke and their school life and their developmental and social connections and all of that sort of thing.
So, I want to give a big thank you to Hailey and Simone for joining us today on Live & Learn.
Simone Russell 1:03:45
Thank you so much. Yes, it’s been wonderful. Thank you for having us.
Megan Gilmour 1:03:49
Our absolute pleasure.
Megan Gilmour 1:03:53
Thanks everyone for tuning in. Help us turn up the volume so all kids are seen and heard. Follow along, like, share, comment, or leave us a review, because we love hearing from you. And if you want to donate, head to missing school.org.au, because every dollar makes a difference.
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