A lived experience of childhood stroke
Stroke can happen at any age. Around 600 children have a stroke in Australia each year. A child’s stroke is a crisis for families.
In the first episode of the Childhood Stroke Podcast series, we speak to two people with lived experience of childhood stroke to share their stories, challenges, wisdom and tips for other families on the journey.
Guests:
- Dee Banks, a mother, whose child had a stroke in utero
- Mitchell Fenton, a young schoolteacher and survivor of childhood stroke
Helpful links:
Transcript
Simone: Stroke Foundation respectfully acknowledges the traditional owners and custodians of Country throughout Australia and acknowledge their continuing connection to land, water, sky and community. We extend our respect to the peoples, cultures and elders past, present and emerging, for they hold the memories, culture and hope of their peoples.
Welcome to the Childhood Stroke Podcast. The Childhood Stroke Podcast is for survivors of childhood stroke and their families. We aim to build knowledge, skills and confidence in navigating services and support. This podcast is also an opportunity for families to share their stories and messages of hope.
The advice given in this podcast is general in nature. Discuss your situation and needs with your health care professionals. This series is presented by Australia's Stroke Foundation and funded by the Barr Family Foundation. I'm your host, Simone.
Simone: Welcome to the first episode of the Childhood Stroke Podcast series.
A child's stroke is a crisis for most families. Families have little understanding of stroke and disability when stroke occurs. This lack of awareness can make it difficult for families to make decisions and to support their child. There is also often a lack of help and support available, and delays in diagnosis can be another issue faced for many families. In our very first episode, we have a parent and a survivor of childhood stroke sharing their stories, their lived experience, wisdom and tips for families starting their journey, or perhaps in the middle of their journey.
So today, let's meet Dee Banks, mum to Emma, who had a stroke in utero, and Mitchell Fenton, a young schoolteacher who had a stroke when he was just sixteen years old. Welcome Dee and Mitch, it's so fantastic to have you on our first episode for this podcast series.
Dee: Thank you. It's great to be here.
Mitch: Thank you. Very exciting, but also very nerve wracking.
Simone: No, don't be nervous, Mitch. So, first of all, we'll start with you Dee. I'm wondering if you could share a little bit about your family’s stroke journey.
Dee: Yeah, sure. So I'm mum to Emma. She's eight years old and she had a peri-ventricular stroke of the left hemisphere in utero. And we noticed her signs of stroke when she wasn't meeting major milestones.
Once I took her to several GP's and I was made to feel like a paranoid first time mum and sent away many times and she just wasn't grabbing with both toys. She wasn't eating food with both hands. And when she started to crawl, it was a commando crawl. It wasn't proper crawling. So we took her to the maternal child health nurse and she referred us to a paediatric physiotherapist and the paediatric physiotherapist saw Emma and said, “you need to get her to a paediatrician immediately.”
We saw the paediatrician. Emma had her MRI and it came back that she had had a stroke, a major stroke. At the time we were completely shocked because we didn't know that kids could have a stroke. And I think if I had known, I would have pursued that intervention more vigorously. I think when I look back now, I did, but I think I would be much more armed with information to give to the GP, which is, you know, part of why we do this amazing work with the Stroke Foundation now.
Then Emma was thrown into intensive therapy I would describe for probably the next three to four years of her life until she started school. And at the time she was diagnosed she was around ten months old. So we had quite intensive therapy up until kindergarten. And then after kinder, she still had therapy, but not as many appointments because we were concentrating on that transition to school.
Emma is a happy child. She has a great life and, you know, I think the biggest thing that confronted me when she had a disability wasn't that she was going to be disabled. It was more that I knew how inaccessible and unkind the world was. And I didn't want her to have to fight to belong in the world for her whole life. So that was the biggest, most scariest thing for me initially when we got her diagnosis. You know, the first thing in my head was, as long as she's going to stay alive, I can cope. It would just be if she didn't that I wouldn't. I would be absolutely devastated. So we were very grateful that the stroke didn't take her life.
A lot of the doctors said that if they detected the stroke in utero, that she wouldn't be compatible with life and we would have been advised to terminate her. And I just can't imagine not having a little Emma in the world and, you know, being in a position to make that decision. And I think now that I know what I know about disability and how beautiful it is, I, I don't know that I would ever terminate a child that's had a brain injury in utero. So, yes, that's our story in a nutshell.
Simone: Thanks Dee for sharing. And you mentioned that you got the diagnosis at ten months. Just to clarify, what was this sort of period of time when you first suspected to diagnosis?
Dee: Yeah, sure. So I first suspected at probably four and a half to five months. You know, I’d take her to mothers’ group and all the babies would sort of be at a similar level of development and Emma wasn't. And I knew in my gut that something wasn't right. But Emma was a really engaging baby. She goo goo, ga ga-ed, you know, all the things, she used to laugh a lot and smile. And she was, I guess, really happy. And so she wasn't miserable or, you know, she didn't have seizures or anything like that or that I knew of.
And I think that's why doctors would see her, or GP's, I should say, would see her and they would say, oh no, she's just slow to develop because she was such a happy, engaged baby. And I do know now that children who have strokes in utero babies, they will sleep a lot and Emma did sleep a lot when she was a baby. And I thought I was just really lucky that I had a good sleeper. She's now a terrible sleeper now, but she gave me a false sense of security the first couple of years of her life. So she did sleep a lot. And I think that something now that would really raise the alarm for me. I definitely would have at that five months old, asked for a referral to a paediatrician. And, you know, I guess when you're pregnant, you actually just don't ever expect that something will go wrong because every bit of information that you receive is not about anything going wrong. It's just about how everything's going to go right.
And it kind of sets people up, it sets people up for a huge shock when it doesn't go right in terms of, you know, having a neurotypical baby and even a proper birth. But that's probably a story for another podcast on another day. But I think there is this expectation that is set up. So in your mind you think they are that surely they can be anything catastrophic. You know, she was born really healthy. She had Apgar scores of nine and ten. She was a thriving baby according to her GPs. So yeah, it was a huge shock and I think for me I just became numb probably for at least 12 months. I guess the thing that I grieve is that that motherhood was taken away from me and I was thrown into being her physio, speech therapist, OT. And our days were filled with appointments and medical appointments. And I guess when I feel sadness about that initial diagnosis period, I just wish I took moments to be her mum and that's it. And not concentrating or being hyper vigilant about that, even though it was really crucial to her recovery and rehabilitation. Yeah.
Simone: And the question that came to me was around how did you feel when you got that diagnosis, which you kind of answered I think. That there was a fairly long period of numbness afterwards. Was there a sense of relief to have an answer because your intuition and your sort of that knowing of a parent or a mother was there from that four-and-a-half-month mark? So was there also a sense of sort of a relief that you had answers at the same time as this grief and loss and numbness?
Dee: Um I probably wouldn't describe it as relief. I probably describe it as that I was angry. I was wild, actually, that I had not been heard. And Emma missed such a crucial period of time for intervention because I was not heard. I guess for me, while it's good to have answers and sort of think I wasn't going, you know, I wasn't going crazy. What I did, I guess, feel was a lot of distrust in the health care system. I thought that they’d really let us down in that sort of general practice, primary care space. Yeah, I don't know if I've let that go, to be honest. I don't think I have let that go and I may never let it go and that's okay.
Simone: It's probably not a bad thing in that, you know, you're going to continue to advocate and fight for improved diagnosis, treatment and care so yeah.
Dee: Yeah, exactly.
Simone: Thanks for sharing Dee. Mitch, I'm going to come to you now to share a little bit about your story. Obviously, quite a different experience. You had a number of years being a kid, an active sort of, you know, everyday kid and you had your stroke at 16. So, yeah, I'd love to just hear a little bit about your story if you’re happy to share.
Mitch: Thanks Simone. Yeah, my story is very different to Dee’s. It shares a lot of similarities just listening to Dee's introduction. And um, so like you said, I was 16 when I had my stroke. You know a normal 16-year-old kid. I think at that point in time we had no care, had no real worries of life, I suppose. You just sort of what you're invincible at that point in time in your life. Either looking for the next party to go to or catch up with your friends. When you say like your life changes in a moment, mine definitely changed the day I had my stroke.
So I was running on a treadmill at the point in time when I had my stroke and got off the treadmill and had this pain in my head. Which to this day I still don't really know how to describe the pain. I've spoken to a couple of people about who have had strokes and I can't describe it. I don't know what this feeling is actually like, but like a chainsaw neck and just like constantly grinding at you. And I knew I needed help really quickly. And for me, lucky for me, mum and dad were both home. My aunty was a nurse and she advised that my mum and dad were to take me straight to emergency.
And given I live in a rural community in Maryborough, it's very fortunate that the doctor was actually at the hospital. He saw me and put me on an air ambulance straight to the Royal Children's, which was where they were able to give me the clot busting treatment. So I actually had a focal arteriopathy stroke. I think I got that right. Which is the front of my brain, had a blockage and yeah, so it's been 12 years since that day, coming up 12 years. It's hard to put into words how stroke has changed my life because not much of my life is the same because of it.
But yeah, I'm now currently 27. I'm a primary school teacher. love my job. I've done a lot of work in working with kids with additional needs. It's a real passion of mine. I believe it's a real passion of mine because of my own personal journey of having a stroke. Yeah I find a lot of joy in helping people who need additional supports.
Simone: So Mitch you talked about that time of your stroke, the sort of that feeling that you experience in the pain, where some of the other kind of typical perhaps stroke signs that we might see in adults there as well, that your mum and dad and your aunty really kind of immediately went this is definitely something that that needs to be picked up and you need to get straight to hospital.
Mitch: Yeah. So I was literally running on a treadmill trying to be fit, you know, feeling really good one moment and the next I lost all sensation down the left side of my body. I managed to, I don't even know because you sort of pass in and out of consciousness just with the pain alone. So sort of on the other end of it. So what I perceive was happening was very different to what perhaps the person who was actually watching me go through it was like. So yeah, I definitely had the face dropped, my speech disappeared and obviously had no feeling down the left side of my body. And I think I lost probably two or three days in hospital. I don't remember anything about them two or three days, other than waking up and then asking me if I knew where I was. I was convinced I was in Maryborough hospital. And don't remember the plane trip to Melbourne at all. So I think I'm kind of glad I don't remember it, but at the same time it would’ve been a fun ride.
My stroke I was very fortunate that I’ve managed, I think because I was so young, I gained feeling again in the left side of my body and face and all that sort of stuff did recover. Not 100%. I can still see the impacts of the stroke. But a lot of my disabilities from the stroke, or - I hating using that word disability. All of the things that the stroke impacted on me, was invisible disability. So I suffered with chronic fatigue. That was huge for me. And like being 16, you're about to roll into doing your VCE at school and that presented a whole new level of challenges. And also, memory loss. And that to this day, is still a massive problem for me. Like currently I've got no idea where my wallet is, and I've got half the family looking for it. And that's an everyday occurrence that I battle with because of the stroke.
Dee: I guess for us, for Em, she has cerebral palsy, so she has right side hemiplegia. She has other sort of health issues that I don't want to broadcast without her permission. But I think the biggest impact for us is that we can't access the world the same way that a child without a disability can. And that's something that’s been really confronting for me. That Emma doesn't have the same opportunities that a neurotypical child has. I guess I'm a bit different to Mitch in that I really want Emma to embrace her disability identity and I, you know, and I guess be proud of that because it is such a big part of who she is.
I think also Emma, is systems and structures and you know, if we think about school, which I think every parent of a child with a disability would tell you is an absolute nightmare is probably just putting it lightly. Emma has been very lucky in the sense that her school are trying really hard to adapt and to meet her access needs. But it's actually the system that doesn't give them the opportunity to give her the opportunities. And so we’re working with systems and structures that further disable her when you know if she had those needs met, she, you know, wouldn't be experiencing the barriers that she experiences. So, you know, it's small things like school holidays at the moment. There isn’t a school holiday program that Emma can go into because she has a disability. There isn't sports things that she can do in our, I live in Ballarat. The only sports or all abilities sports activities happen on the school holidays for one day. So there's actually no sports teams or anything that she can join. Or the dance studios as much as they very much try to adapt, there's no all ability dance community. So I guess for me as a parent, the most confronting thing has been that I look around and there's like a brick wall everywhere we're going and it says to her, You don't belong in this space, you don't belong in this community. And that breaks my heart. I think people are so scared of disability and I don't know why because every disabled person I know are the most amazing, resilient, incredible people. And while the challenge of disability is so significant and I would never take that away from Emma. I'm sure there's things about her stroke that she's so angry about that she can't verbalise to me, but I think it would just make her life a lot easier if the systems and structures provided her with equal opportunity and, you know, that's including the health care system as well that yeah, we've had an incredible experience with health care in terms of post diagnosis. The Royal Children's Hospital has been incredible for us. The Victorian Paediatric Rehab Service. And we've also been very lucky that we've engaged therapists for Emma who are incredibly dedicated, strong women. They're all women and they advocate for her dignity and they are fierce, which is what I need sometimes because I'm not always fierce and I'm not always able to advocate for her.
So yeah, Emma's day to day. She has a really good life. We provide her with as much opportunity as possible. And you know, today I took her because I had Mum guilt for working all on the school holidays. We went shopping and she bought, you know, about $150 worth of crap. But, you know, that's the thing she doesn't. And when we go out, people just stare at her. And I would love to just go out and not be stared at. It just it makes me wild. And I want her to go out and just experience the world without being stared at. You know, we can’t even go shopping and have a joyous mother and daughter time without people staring. And they stare so bad and, you know, and they look at me with pity and, you know, like, you must have a really hard life or how awful. Or I couldn't do that. I couldn't do what you were doing. But her and I like we're having a shopping day. We're living our best lives like there's nothing to see here. So for me, you know, she's a sassy little wheelchair user who just doesn't, you know, get out of my way I'm coming through sort of thing. And I love that. I love that she's proud of our wheelchair. I love that she's proudly disabled. I will always encourage her to be proud of that part of herself.
And I think, yeah, we do have we do have challenges as well. You know, health challenges. But Emma is eight years old now, and I'm just at a point where I prefer her to consent before I elaborate on those in a public forum. And, you know, because if that was me at eight years old, I wouldn't want my mum telling everybody about my health care challenges. But absolutely, we have challenges. We just try and make the best of every day because we never know with Emma or any stroke survivor when that might be your last. I think that's the thing that that Mitch referred to before. That's what stroke teaches you, isn't it. It's a second chance and it turns your world upside down. But you never take another day for granted after a stroke diagnosis. Not a minute. Not a day. And, yeah, you just have so much gratitude. Yep.
Simone: And you spoke about the health care system being a relatively positive experience, but I know that you found it difficult getting support. Can you share a little bit about after that time with diagnosis, what that was like for you and your family? And, you know, I know that this is probably going to lead into a conversation about an amazing group that you've set up. But yeah, how did you navigate that lack of support and what that looked like?
Dee: Yeah, so I obviously Emma was diagnosed and the first thing you do is go to Google or something to get some resources around information and prognosis. You know, like you just want a Mitch in your life at that point in time because you just want to know, am I doing this right? Am I being a good mom? Am I being the mum she needs? And now I've got Mitch I don't have to worry about that because I always say to you, tell me if I'm doing the right thing or if I'm not, but I think, no, there were no resources. And so obviously I went to the Stroke Foundation because I thought, well, surely if anyone had it, it would be the Stroke Foundation. And the Stroke Foundation hadn’t actually, wasn't at the point strategically where they were looking at childhood stroke and it had come up in meetings and things, you know, as a project moving forward or an initiative to focus on. The Stroke Foundation connected me with another mum, and then we developed a Facebook support group called Little Stroke Warriors. And Little Stroke Warriors came through thick and fast with people that needed support because there wasn't anything like it in Australia. And as stories came to the page and you know, the community grew and there were so many similarities and themes popping up in, in how there was a gap in information. And the first thing was that there wasn't a resource that helped to navigate the pathway forward for post diagnosis. It's like, where do I even start? And so we worked with our community and the Stroke Foundation to develop the Our Family Stroke Journey booklet based on the My Stroke Journey booklet that the Stroke Foundation has for adults who experience stroke.
And from there we became officially part of the Stroke Foundation as a sister charity. So that is really exciting. And the Childhood Stroke Project was then born and we now have a Childhood Stroke Lived Experience Advisory Group. It was really important to me from the very start that we had survivor voices in this space, and I'm very privileged to be the chair of that group and Mitch is the Deputy Chair. I am so proud that we are all working together to close the gaps, close the gaps in treatment, close the gaps in stroke care and diagnosis and recovery for kids.
I work in health care, and I was working in the emergency department. I'd see all these people coming in, all these adults having strokes, and they get treated so quickly. And then I would check my phone and I'd have another parent tell me that they'd waited four weeks or two weeks or three days or, you know, it would just be extraordinary the amount of time it took to get their child's stroke diagnosed and to have treatment. And as we know, with stroke, time is brain. And that is certainly the case with children as well.
I got a bit, you know, that fire in my belly that I had from the GP situation was still burning. And so I went to my local MP and I said, federal MP and I said, Look, I just want to let you know this is what's happening. You know, you've got adults who are being treated within the with a crucial timeframe, not all adults. I just want to say that after working with the community, that's still a space that needs a lot of work as well. But certainly adults that I saw and that there's children and they're not. And that really concerned me. And also look at what we've already done with the Our Family’s Stroke Journey and the Stroke Foundation are on board with this.
And the Stroke Foundation flew into action, as they do. They have been incredible support along the whole way, and they partnered with the Murdoch Children's Research Institute for the Paediatric Acute Code Stroke (PACS) project. And that was a huge milestone because it means now that there are nurse coordinators in every single major children's hospitals who concentrate just on stroke, and there will be a code stroke for all of those emergency departments and hospitals as well. And I you know, the partnership between the Stroke Foundation and the Murdoch Children's Research Institute has been phenomenal. And yeah, I think this is just the beginning. So, yeah, that fire you talked about before is still burning. It's raging. But I'm always a believer of if you've got anger, you know, use it, use it in the most constructive way possible. So that's, you know, that's what we've been we've been doing.
Mitch: The fire is very real. I totally get when Dee says the word fierce, you know, there is that anger. Why me? Why did this happen to me? And no, there's never, I've never got an answer for why I never will have an answer to why I had to have a stroke at 16. To be where I am today, I really do owe it to my parents and my family around me. The support networks that I have today compared to what I had when I had my stroke, like there's no comparison.
Once you’ve had a stroke your identity changes completely. And at 16, for your identity to change completely, I think that's a tough pill to swallow. I know it's definitely one I struggled to swallow for a long, long time. And I think being part of the Childhood Lived Experience Group, it's brought upon a lot of reflection about some of the stuff that I actually went through to get to where I am today. There was just there was just nothing in the way of information and so many questions that you wanted an answer for, but there was no answer for it.
Dee: You know, I think it's a unique connection that only we really get. And, you know, when I say we the survivor community and parents and carers and I think someone you know you just get it. I'll always say that I never know what it's like to have a stroke and I'll never act like I know. What I want to do is ensure that anyone who has had a stroke, particularly children and adolescents, that they have every opportunity to thrive as a person because they have a human right to have those opportunities. It is a hard pill to swallow, even as a parent in terms of the diagnosis. But that's because you know, that's because the system is not designed to support our children. Mitch has some great examples of how the education system wasn't really that flexible for him. And, you know, I'm seeing it right now as well with Emma in school.
But I think you are very lucky to be part of the survivor community or the stroke community, even though it doesn't feel very lucky to have one. I think it's a privilege to actually be learning. And, you know, it's always the people who survived a stroke that are willing to give us all of this information and they're doing the work. And what I want to see is people that are non-disabled doing a bit of the work. It's always the people that have had a stroke or who have the chronic illness or however they want to comfortably identify with themselves. It's always them doing this work. We need everyone else to get on board and to, you know, have their fire going and yeah, break down the barriers and provide those opportunities.
So hopefully, you know, with the Childhood Stroke Lived Experience Advisory Group, we'll you know, we're all very cohesive. We've all got the same goal and we're all very motivated to close those gaps together. It's a beautiful experience. And we've got the experts on our side and everyone at the Stroke Foundation. So yeah, it's a recipe for success in my opinion.
Simone: Dream team.
Dee: Dream team. A team.
Mitch: Definitely.
Simone: Thank you both for sharing more about the journey, I guess, to where we are now. Mitch, you have talked a little bit about school and obviously being a schoolteacher, you have a pretty unique view of the education system and I think there's a whole possibly podcast episode we could do on school alone, but I thought we might just touch on what was it like a little bit more around returning to school for you?
And then Dee, perhaps over to you to talk about transitioning, you know, Emma starting school and early education. But yeah. Mitch, what was it what was it like for you and do you think that there's been significant changes or improvements over the years?
Mitch: Yeah. So I obviously, you know, I was starting year 11. I was going into 11 at high school and the start of VCE and I was travelling an hour just to get to school each morning and an hour at night just to get home. So trying to combat chronic fatigue and memory loss and travel an hour just to get to school was a battle. But one that I, I suppose at 16 you're very naive and I was very determined. That's why you have that said that anger. And I was like, well, you know what? I've had a stroke, but I'm not going to let define me. And I decided on the very first day of 2012 that I was going to go to school, and I was going to day for the whole day, and I was going to get myself from point A to point B, no worries. And I quickly learned that that was not going to be the case. And I remember I got to the end of the day, and I was so mentally tired and fatigued that I actually couldn't. I remember standing at the gate thinking, I don't even know what car my mum drives. I can't even work that out. And yeah, that was when the penny kind of dropped I suppose for me as a person who had a stroke that, you know, my life was not the same and it was never going to be the same post stroke.
So, I was very lucky I went to school in St Pat's. My experience with school was very supportive. The people around me were very good, but there was no box to tick that you had a stroke. You know, because you've had a stroke, you know you're going to, we're going to give you this, so you know you're going have extra time. Or extra time was always something that everyone put on the table. But when you've got fatigue, you're already tired. You don't want an extra 20 minutes on a three-hour exam because that by the time you get to the three hours, by time you got to the first hour you were that tired, that there was nothing left to give.
So, I had a lot of issues just even with writing given my stroke had affected my left side. And I was lucky me left-handed, I couldn’t write. So I was very lucky in the fact that I was given a computer to type things up. Yeah, I just had to be very conscious of what I could and couldn't do. And if I ever stepped out of that realm, I was very quickly reminded as to why I couldn't do those extra things. So, I did a reduced timetable at school and yeah, I got through year 12 and got an ATAR to get myself into Uni.
So, I suppose for anyone listening who's had a stroke, there is some probably trying to say that, you know, there is other ways and there’s other means, but you've got to be able to navigate that system. And my mum was amazing in the sense that she fought fiercely for me, and you know, she really drove a lot of, she did a lot of behind-the-scenes stuff for me.
She's a schoolteacher as well. She was very much aware of what I needed or what things needed to be put into place for me to be successful. I know that that isn't the case for everyone. So yeah, you've got to be there's things that can definitely be improved, I suppose. Yeah.
Simone: Thanks, Mitch. Dee did you have a few words to say around, I guess, transitioning. I think, as I said, it's probably a whole episode on its own around school and education. But anything to add to Mitch's experience of getting back to school in VCE?
Dee: Yeah, yeah, sure. I'll just be quick. Famous last words of Dee, but I completely agree. The fatigue is the biggest challenge and for teachers to really understand what that looks like and that it can't be resolved with 12 hours sleep is really, really difficult. Particularly with Emma, because Emma has language disorders, so she can't always verbalize what she's feeling or what she needs in order to slow down or to stop. So, we're looking for non-verbal signs of her reaching her limit. And then by that stage, it's usually too late. She's really had enough. Emma went to school part-time initially. So, when she started school, she had the Wednesdays off and we continued that for 12 months. And then I can't tell you how many times we've had mental health days because she needs to have a day off just to manage fatigue.
I guess for me, the school being really supportive, I've got an extremely amazing learning diversity leader who advocates for Emma, so that's really helpful. And initially I thought kids will be really mean to her, but the kids have been phenomenal. What has sort of shown up this year though, is a bit of unconscious bias with teachers and that looks like “oh she should be in a specialist school, she shouldn't be in a mainstream school.”
And them sort of thinking that that first of all, that that's their decision to make when it's not. And also that, you know, Emma is entitled to be anywhere, in any space. And quite often Emma is learning to adapt to the neurotypical world, but there's not a lot of neurotypical kids learning to adapt to her world. I must say at school they do that. They do advocate for Emma's access needs. Like I'll go out and she'll have her friends there and they'll know her access needs better than me, most of them, because they're just so in tune and they’re beautiful, beautiful kids. But yeah, it's been really challenging. The biggest thing or the biggest piece of advice I would give is that first of all, if you want your child, if you think the mainstream system is best for your child, then put them in the mainstream system. I don't think there's any system without flaws. I know there's people with kids in specialist school who also have issues and challenges, and I don't think the system will ever be perfect either. And that's not what we're asking for. But a really beautiful example is Emma's school had planned wheelchair basketball as an excursion. So, when we talk about inclusion, it's not about having someone to eat lunch with. It's about things like that. You know, Emma’s the only wheelchair user in the school. But everyone's going to learn how to use a wheelchair and play basketball, which they're all really excited about. But I think it's just for me, listen to your therapists, involve your therapists all the time.
Children are entitled to have therapy at school. There are so many people in our community whose children's therapists are told they're not allowed to do therapy at school. They are. The other thing that I would say is that I also am open to feedback from therapists as well. So, it's not always what you want to hear, but it's always in the best interest of your child. So yeah, there has been times where I've been in tears with a therapist, but it's probably because I'm not ready to hear it or because it's actually confronting what they're telling me. But what they're saying is right and has always been right. So, I really trust them as experts in what they're doing. I'm the expert of Emma as her mum, but they're the experts in physio, speech and OT. So that's the other thing I would say other than, yeah, it's not as bad as you think it's going to be. It isn’t but you need to choose your school wisely and look at their attitudes towards disability. That's what you should be looking for, not how beautiful the building is, although accessibility is important, but what are the attitudes and beliefs about disability and inclusion? Because that will really tell you whether or not that's going to be an appropriate school for your child.
Simone: I think some really wise advice that a, I'm wondering if we can finish up with a kind of along those lines of advice and tips and wisdom. I think Dee, coming from a parent's perspective, what advice have you got or final words of wisdom or tips that you might have a parent that might be navigating this journey at various stages? Is there any of maybe thinking about three different things that you kind of you constantly live by or that you really want to share with other parents who might be listening?
Dee: Yeah, my first piece of advice would be to connect with the disability community and adults because I honestly had to challenge my own internalized ableism that, you know, beliefs and attitudes that were constructed within me from society. And I don't blame myself for them. But when I connected with the adult disability community and they talk about the impact of their parents’ beliefs and attitudes on them, and it was really confronting. But it's made me a better mum by getting rid of all of that. When I talk about grief and loss, you know, pre connecting with the disability community, I would talk about my hopes and dreams for my child had gone because of their stroke, because she's had a stroke. But that was actually my internalised ableism talking. It wasn't actually, you know, I had to confront that. Imagine if I just imagined what if my mum was grieving the loss of the person, she thought I'd be? How would that make me feel? And I'd feel devastated. And I don't want Emma to ever feel like that. I don't want her to ever think that I'm grieving a person that she's not.
And so that's a huge thing for me when you're talking about grief and loss, just really think about what does your how would your child perceive that? How would you feel if that was your parent saying that I'm grieving the child that I didn't think I was going to have. I'm certainly not suggesting that's what all people are referring to, but that was pretty confronting for me. But I'm so glad I've let all of that go and I just have a real neuro affirming attitude towards them. Like I'm just embracing her for her neuro diverse self and where, you know, and I love every minute of it.
The second bit of advice I would give is to connect with the community. So, if you fortunate enough, you know, spending time with Mitch and all the survivors on the Lived Experience Advisory Group has been life changing for me. And even, you know, talking today, I've learned a lot with, you know, talking to, like hearing Mitch talk about his stroke and the impact. And I'm just thinking maybe I'm being too positive. Maybe I'm being, I'm not looking at, you know, the things that Emma might be grieving and I guess the things that she might be confronted by that she can't verbalize.
And maybe I need to tune into that side a bit more. You know, why the other kids crawling all over the playground and I can't. You know, she can't ask me that, but maybe I need to tune into that more. So, I'm constantly learning from the survivors of stroke and the childhood stroke survivors as well.
And the other thing I would say is look after yourself, because as someone who is constantly… Someone said to me the other day, or you do, you must be so hard for you parenting a child with a disability. It's not hard. It's just more. And that's how I describe it. It's just more. We just have to spend more time, you know, getting them dressed or, you know, understanding what they're trying to communicate to us. It's just more and if you aren't looking after yourself, you're not going to be able to look after your child. And I know self-care is such a buzz word, but and a lot of self-care things can be expensive and not reachable for a lot of people. But if you can see, I see a psychotherapist. I've been very open about that, and that has been crucial to me. I have a job where I deal with a lot of vicarious trauma as well. So that has been crucial to me, learning about how to do self-care. And I have an amazing, supportive family. I have supportive friends.
I have set that up myself, though. Like I literally have, I have you know, I don't have time for people or things that, you know, take my energy from me. And so I'm very wise about who I let in and my circle. And I keep that really strong. And then just remember that, you know, you're the parent of a child that's had a stroke, but you're also you. It took me a while to get Dee back. I think when you when your child diagnosed or Mitch said that he lost a part of his identity at that point. I think as a parent, you do as well. I think when you become a parent, you lose identity. But particularly if the child has medical challenges and issues, you just completely forget about who you are because it's all about them. And yeah, I've, you know, made sure it's a priority for me to just get me back. I wish I had gone back to work earlier. For example, I took a long time off work. I wish I had done that earlier just to get a bit of me back.
Simone: We will share all of the resources and the links to some of the things we've referenced in the podcast today. So Little Stroke Warriors where you can join that group and there's a Facebook page and a group as well, a private group where you can talk to other parents and there are some adult, now adult survivors of stroke when they were children had their stroke, but they're in that group as well. And we'll also share links to that the PACs study. So the Paediatric Acute Code Stroke project.
Mitch, what about you? So you might have some advice for parents and perhaps childhood survivors of stroke as well. What are three things that you'd like to share that someone might be listening, that you kind of… it could be things that you've learned along the way that really guide you. But similar to Dee, what are the three things that you'd like to offer up to sort of finish up the podcast?
Mitch: I kind of wish at this point Simone that I'd gone before Dee, because I think she's taken all three of mine, but they're very good things that Dee has suggested. But I think for me, like I've written them down because I when I read that question the other day, I was like, I'm just not sure how I can break it down to three things. And it's quite a powerful question to sort of answer, and one that is when I was having a stroke, if someone had given me them three things, I would have jumped at to have had someone telling me three things that help me get through my journey. But for me personally, and, you know, everyone's journey here had a stroke is different so, yeah, like just make sure that you don't be too hard on yourself would be the first one, especially if you're the one suffering the stroke or even the parent. Like there is no right answer. And we're all learning through the process, I think, and I think you're reflecting on it now. I was probably very I was very determined person before I had the stroke, and I'm now an even more determined person because of it. So you know, I think there's a lot of positives to come out of the journey that I've been on to get to where I am today and to use your support networks.
You know, I very quickly learnt who my true friends are because of the stroke and my family and then really important friends really became vital for me in everyday life activities. Because I just didn't have the energy or the time, I suppose similar to what Dee said, to actually be bothered with all the other stuff outside.
And probably lastly, you know, everyone's different and I often say this to my kids when I'm teaching them, we're all perfectly imperfect. I've had a stroke, but I don't let it define me. And nine times out of ten, I'm very lucky because my… I don't know if you’d call it lucky, it’s probably a really bad word to use.
But most people don't realize I've had a stroke which has been a hindrance at times. But like because they don't realize that I've had a stroke like you. I try to, you know, I try to live my life as best I can each and every day and look for the small wins, I suppose. And whether that's, you know, just getting to rehab or, you know, the little things after my stroke, you know, just being able to make my own breakfast or not being tired through doing a walk around the block. All them sort of things all add up at the end. Keep going would be my advice. Yeah.
Simone: With that, I'm going to wrap up this episode of the Childhood Stroke Podcast. A massive thanks Dee and Mitch, for coming on our first episode and just really being so open and generous with sharing your lived experience with the community.
And I know that so many people are going to come away with so much more information and advice and feel really supported and less alone just from listening to this one episode. So I really thank you and grateful for having you on. If you've found this episode helpful, please do share it with your family, friends and colleagues. Subscribe to the podcast to be notified about future episodes and they will be coming.
We've got lots of topics to talk about. Leave us a review and more people will be able to find us in the stroke community as well.
Simone: That's all for today's Childhood Stroke Podcast. Find out more about Stroke Foundation's Childhood Stroke Project by visiting Stroke Foundation dot org dot au forward slash childhood stroke. Stroke Line’s Health professionals provide practical, free and confidential advice. Connect with them on EnableMe or call 1800 stroke. That's 1800 787 653. The advice given here is general in nature. Discuss your situation and needs with your health care professionals. This series is presented by Australia's Stroke Foundation and funded by the Barr Family Foundation.
