Episode 2 – Sev’s Amazing Journey

Speaker 1:                        Welcome to Loop Me In, the podcast community for parents and carers on raising children with disabilities. Join presenters Dr. Lisa Interligi and Kristine Christopoulos and their guests in sharing experiences, information and support ideas to help children with disabilities flourish.

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Kristine Christ…:             Hello and welcome to Loop Me In. Our guest today is passionate about connecting people, especially children, with their mental health and wellbeing. She has grown up with cerebral palsy, so has a lifetime of experience and understanding, and is a graduate psychology and counseling mentor. Sevastine Katsakis? I hope I’ve said that correctly. Welcome.

Sevastine Katsa…:          Thank you very much Kris and Lisa-

Dr. Lisa Interl…:              Hey, Sev.

Sevastine Katsa…:          It’s lovely to be here today.

Kristine Christ…:             Lovely to be with you too. We’re very happy to have you on. Now, I believe you are on the Center of Research of Excellence at the Murdoch Children’s Institute. Is that correct?

Sevastine Katsa…:          That’s correct, and my journey to getting there has been nothing but phenomenal and so beautiful to be a part of. So, let me take you back to the very beginning. As you mentioned earlier, I have cerebral palsy, so I was a patient at the Children’s Hospital for all my years up until 18. The Children’s Hospital became very quickly a second home to me and I knew that having that experience early on would shape who I would become and what I wanted to do with my life.

Naturally, as I went through school and tertiary studies, I fell into the helping profession. I went into psychology and counseling with the idea that I wanted to one day come back to the hospital and work there as a clinician. Throughout my time in my tertiary education, I started becoming a volunteer at the hospital. Through that experience, I was able to actually get all my clinical training done as well, which really helped me on my journey.

At the end of 2019, when I graduated, it was time to say goodbye to volunteering. But, little did I know that the next year, 2020, would be a phenomenal year. Because not only would I fall fantastically into research and into supporting young people like me with cerebral palsy and other disabilities as well and use that experience along with my clinical counseling experience to support them in research, but I would also be directed by one of my pediatric care team, Professor Dinah Reddihough.

These past few years have been absolutely phenomenal, working in a space that not only understands me, that aims to enrich other people and their families to live the best life that they want to live through research. Through that, I’ve actually been able to secure a second position in research as a consumer coordinator and that’s with Healthy Trajectories. We had the pleasure of meeting you a couple of weeks ago, Kris, with Christine Imms?

Kristine Christ…:             Yes, that’s right.

Sevastine Katsa…:          And the scope of that research is actually looking at multiple disabilities, not only cerebral palsy, and how to improve and better their lives.

Kristine Christ…:             And what better person to help show that?

Sevastine Katsa…:          Thank you so much.

Dr. Lisa Interl…:              It’s a great example too, Sev, of everybody wants to connect to their career in a way that’s really meaningful for them, that they’ve got a purpose. What a fantastic purpose you’ve got, it must be really motivating for you.

Sevastine Katsa…:          I never actually believed, Lisa, that I would be in the disability space. Because growing up with a disability, a lot of people resonate with it and a lot of people don’t, it’s a way of coping mechanism. So, I tended to move away from it as much as I could in my teen years, to cope with the idea of having a disability. I thought clinical counseling and psychology was the best space for me, but now that I’ve found what I’m doing, engaging people and families in research, I’ve found my home. I can’t put it in any better words than that.

Kristine Christ…:             Can you tell us a little bit about your childhood?

Sevastine Katsa…:          Yes. What would you like to know in particular?

Kristine Christ…:             How was your journey through school? Do you think it’s different today in what you’re seeing in the cerebral palsy sector?

Sevastine Katsa…:          Well, I would say first of all that I’m quite lucky to have a mild form of cerebral palsy. I have spastic diplegia, which only affects the lower part of my body. In that sense, I’ve got the best of both worlds. That’s the mentality that I’ve grown up with. But even so, growing up, bullying was quite hard at school, because young kids don’t understand difference very well. They tend to point it out quite prominently, but the changes that I’ve seen today are changes in being more inclusive and accepting in a school environment. Helping people own who they are and love every part of them.

Dr. Lisa Interl…:              Yeah, that’s fantastic. I think that schools are working really hard at this issue. I think you’re right, just maybe part of growing up is to point things out. Kids don’t have a filter, so it really relies on culture, on school culture or on family culture. To make sure that they don’t come across as bullying or they’re not intentionally bullying kids. Tell us about your research, Sev.

Sevastine Katsa…:          My research has two focuses. I recruit, I orientate and I support young people into the research. We’re looking at areas of mental health and improving the environment, building supportive environments for people to participate in the life that they want to live. We’re looking at areas of the NDIS, family wellbeing and also as we’ve mentioned, inclusive education.

My second focus and my passion is developing resources, mental health resources for people with a disability to have while they’re going through those milestones. To be able to support them through all the challenges that they will face. Because regardless of what disability you have, the challenge is there and it’s very important not to be overlooked and not to be, if you are experiencing your symptoms, for example, it’s very important for them to be seen for what they are. Not just overlooked as part of the disability itself.

Dr. Lisa Interl…:              And is there a greater prevalence of mental health issues amongst children with disabilities?

Sevastine Katsa…:          Yes, there are. Yes, definitely, so that’s what the research has shown and that’s what we’re focusing at the moment, to decrease the gap.

Dr. Lisa Interl…:              And is that depression, anxiety? What sort of symptoms could parents see if their children were suffering from this?

Sevastine Katsa…:          It would be the major symptoms across the board. It would be depression, anxiety and isolation. If we see that a child is no longer wanting to participate in their usual programs, if they’re more fatigued and if they spend a lot more time in bed than they would normally, that’s a big sign to look out for. So, these toolkits will really help parents be able to have conversation starters, not only with their children but also with GPs, to bring it to their attention.

Dr. Lisa Interl…:              And how experienced or knowledgeable do you think, I mean, this is a loaded question, GPs are in dealing with mental health issues for kids with disabilities?

Sevastine Katsa…:          That’s a very interesting question and that’s something that we’ve been grappling with as a research team. It turns out that there needs to be a lot more experience and training in that area, because GPs are, I guess, it’s all in the name, general practitioners. When it comes to disability, whether it be cerebral palsy or something else, they need to be trained in the characteristics of that disability as well, in order to be able to pick up any signs of mental health or mental ill health.

Kristine Christ…:             Yeah, and I think even on our journey, I can’t imagine Mathew having depression or anxiety, but of course, he has both of them. I guess it’s the isolation that you mentioned before, because they do get lonely and in some cases like with autism or in an intellectual disability, they can’t say how they’re feeling. I guess that would be a difficult one that you would find really interesting in your research.

Sevastine Katsa…:          Yes, definitely. In cases of intellectual disability, for example, or autism, we find that behaviors get quite repetitive. Especially self-injurious behaviors like scratching and biting and becoming overall frustrated is a normal emotion. But, when that’s becoming more prominent, that’s when something needs to be done about it, because that’s their way of saying, “Hey, I’m not feeling well.”

Dr. Lisa Interl…:              Oh gosh, we had years and years and years of Louis vomiting at school. He was so anxious he had a physical reaction to it and it took years to actually resolve in some way. Using drama therapy, which was fantastic for him.

Sevastine Katsa…:          I was just about to ask, Lisa, what method you used. It sounds like it was a very creative method for him.

Dr. Lisa Interl…:              Yeah, it was. The particular therapist, he went to Port Phillip Specialist School, that they had at the time, she was just fantastic. I mean, you couldn’t see your way out of it for him and how shocking it was for him, but she did an amazing job.

It was through role play, that drama therapy, she was able to desensitize him to the school environment, but also hospital environments that he’d had. He’d been at the Children’s Hospital as a toddler and had some very strong reaction to that experience. She was able to desensitize him to those medical environments as well. She was just fantastic.

Sevastine Katsa…:          That’s beautiful to hear. Oftentimes, we underestimate the power of creative outlets like that, whether it be music, whether it be drama or art therapy. Everybody needs an outlet to be able to let go and to be able to, I guess, escape, for even a moment, the challenges of daily life.

For me personally, if we go into it, it’s always been music. In any challenge that I face, it’s always been I’m able to switch off and switch on with music. I play the violin, so I’ve been playing the violin for a number of years now and that’s my go-to whenever I feel like I need it. Yeah.

Kristine Christ…:             Explain to us what happens in your hubs. What are you looking at doing in those next year?

Sevastine Katsa…:          We’re ultimately looking at changing or influencing policy. With any good research, it needs to come to the policy and government level. We’re looking at hearing the community voice, so gaining as many people with various forms of disability as possible, so that we can hear their voice and understand their needs. I think that’s the first step. In order to really create change in those lives, you need to know the issues that are going on, so that you can research them and find solutions.

Kristine Christ…:             And I guess it’s also educating the parents as well, isn’t it? Especially-

Sevastine Katsa…:          Definitely.

Kristine Christ…:             The young kids that come in and perhaps the parents have no understanding of the disability their child has.

Sevastine Katsa…:          And we also found that it’s much more than just research. It’s much more than a center of research excellence or a research hub. It’s forming small support groups. Networks of other people that understand, whether it be parents, grandparents, foster parents, siblings or people with a disability themselves. It’s forming that connection and belongingness. A lot of them never really felt that in their lives before.

Dr. Lisa Interl…:              Yeah, because I think even as a parent, it’s kind of isolating. I remember when Louis was very unwell when he was younger, you were just surviving day to day, let alone trying to work out what was going on. Any child is always a challenge as a parent, but with a child that has additional needs, it does make it very challenging and very isolating. I mean, that’s why we set up this podcast, is really to try and provide that sense of connection and belonging for other parents who are going through an experience with their child.

Sevastine Katsa…:          And I think this podcast is absolutely incredible for that. Because by listening in, people don’t feel alone.

Kristine Christ…:             That’s right.

Sevastine Katsa…:          Like you said, Lisa, it is isolating. It is a brand-new experience, it is difficult to find your feet. To be honest, even without research, because I fell into the research space over the last couple of years. Before that, I didn’t know what was happening in the disability space, I didn’t know what was happening with disability research. That was even more isolating, not to have a point of connection there. Again, your podcast does that for many families.

Kristine Christ…:             Yeah, and I guess, Sev, it’s also when you’re leaving school and you don’t really know. I know with Lisa and I, our boys are in a day center, but obviously, you’ve done amazing too, [inaudible 00:14:34] got to where you have. I’m sure there’s a lot of adult people out there with a disability that could go on to do something in the workforce, and it’s just finding that, especially for the parents.

Sevastine Katsa…:          And it’s about also creating the new goals for your children. It’s about seeing their potential and where they can reach. It’s not really about schooling or education or getting a master’s degree. It’s just about, are they happy, are they succeeding? Are they reaching their own personal full potential? That’s the main thing.

Dr. Lisa Interl…:              Yeah, I think that’s absolutely right. We have this conversation quite often, about what’s next. Sometimes, what’s next is your own pressure. It’s your own projection of what you see as success or you see as progression. Actually, really, you’re right, it’s about happiness. Are they challenged and excited and wanting to go and do things? Have they got social connection is really important. You don’t want to forget that by projecting your own thoughts on top of your child.

Sevastine Katsa…:          I love that as well, because as parents, when your children were born, you would’ve received such a medical diagnosis of, “This is what your child has, this is what they can do and this is what they can’t do.” It’s very limiting. Humans are much more complex than that. It’s sometimes as simple as changing the environment around them ever so slightly so they can achieve what they’ve always wanted to achieve, but maybe told that they couldn’t achieve.

Kristine Christ…:             Yeah, it’s so true. I do remember someone saying Mathew will work in our family business, he won’t be the CEO of the family business, but he’ll definitely work there. That was a goal we had to get in there and today, he’s doing that. I’m sure you’ve outdone your mum’s goals on you. I’m sure she’s a very proud lady.

Sevastine Katsa…:          When I first graduated, I think she told us many people as she could. But, I’m really glad that your son, Kris, is working where you want him to work and he’s there. Thank you for sharing that with me.

Kristine Christ…:             Pleasure. It’s been amazing to have you on and I think what you’re doing there, I think we’re going to be hearing from you a lot in the future. We’d love to come back and talk about what’s happening, because I’m sure there’s things happening that we’re not even thinking about right now. Is there anything you can share with us that’s on the plan for next year?

Sevastine Katsa…:          I would just say watch this space, because there’s quite a few things happening and I would love to stay connected and keep you both updated as we go along.

Dr. Lisa Interl…:              That’d be fantastic, Sev. You’re doing a great job. Well done.

Sevastine Katsa…:          Thank you so much. Thank you.

Kristine Christ…:             Thanks, Sev. Thanks for sharing this with us.

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