Transcript for
Supporting family mental health when a child experiences chronic illness

Narrator (00:02): 

Welcome to the Emerging Minds Families Podcast. 

Nadia Rossi (Host) (00:05): 

Hi, I’m Nadia Rossi, and welcome to The Emerging Minds Families Podcast. Before we start today’s episode, we would like to pay respect to the traditional custodians of the land on which this podcast is recorded, the Kaurna people of the Adelaide Plains. We also pay respect to all Aboriginal and Torres Strait Islander peoples, their ancestors, and elders past, present, and emerging from the different First Nations across Australia. 

(00:32): 

This is part two of our conversation with Nicki, a parent of two young people living with chronic health conditions. In part one, Nicki shared her family’s experience following her son’s diagnosis of type 1 diabetes and the way an ongoing health condition can impact a child’s mental health. In this episode, we continue by looking at what this journey can mean for siblings, including the big feelings that can come with changes in attention, expectations, and family routines. 

(00:59): 

We also talk about the importance of supporting a child’s wellbeing by supporting your own and the signs your child may be showing you when they are struggling. Nicki reflects on the value of reaching out for supports and speaks about the way chronic illness can shape relationships with partners, friends, and extended family, and how connection, communication, and community can help protect wellbeing over the long term. And so, let’s jump back into my conversation with Nicki. 

(01:33): 

You mentioned something earlier about drinking alcohol, and it got me thinking about I had a very old friend of mine who had type 1 diabetes. And when we came into adulthood and they would drink, and you would have that kind of concern about I feel there’s that pressure, especially in the Australian society, a lot of our functions around drinking when you’re in that young adulthood and there’s lots of drinking, and you have that pressure to keep up with your friends. And as a friend watching on, you don’t ever know whether it’s your place to say anything, that’s they’re managing their illness. Have you had these conversations with Riley, and how have you prepped him? Because I know he’s 15, but how have you prepared him for that part of his life? 

Nicki Walsh (Guest) (02:13): 

It’s a actually really, really good point that I think we shouldn’t not talk about with our kids. Even if they’re young, they know what drinking alcohol is. And so I think the first time it was brought up with Riley was actually when he was 12 in the diagnosis education part. Not in any specific detail, but they’ve kind of said, just flagged, “Drinking can be really dangerous and there are different things, so what we would recommend is, I’m not saying don’t drink, we’re just saying, if you’re going to drink,” and they got me and my husband to commit as well. But he’s just honest about it and that he does his training, so to speak, his education around drinking alcohol as a type 1 diabetic. So, that was right at the beginning. And obviously, he’s got an 18-year-old sister, so he’s seeing her and her friends go out every weekend. 

(02:58): 

She’s not a diabetic. And I am a recovering alcoholic. I’ve been sober for six years. So, we are very, very open in our family about talking about… It’s not a, “You will not drink,” because I know that that’s how I started drinking. So, my parents were like, “You will not drink.” And I’m like, “Yes, I will.” So, I think we’re trying a different approach where we’re having open conversations around it. And so he’s just started at 15 expressing that his mates, they’re not going out drinking or anything like that, but he’ll be at a barbecue and his mates will have a bit of a beer with their dad. I guess it depends on what your family rules are and what your social rules are. But in our circle, having a sip of your dad’s beer from 15, 16 is pretty normal. And he has expressed that he feels like he is missing out on that. 

(03:45): 

And so we have been really hopefully open and understanding about it. And we’ve spoken to his team, his medical team. And so next year he is booked in to do specific education around drinking alcohol and type 1 diabetes. So it’s available through the… Well, here in Queensland, I know that the public diabetes services run these programs as well, private, and I guess it’s that harm minimisation approach, if you’ve heard of that, which is we’re not going to stop kids like your friend from going out and doing what they want to do. And no amount of, “You’re grounded, you’re not leaving the house,” is going to stop them. Kids will find a way. And so this approach is, “Okay, if you’re going to do it, you need to have all of the information at hand as to how this will impact what you need to do.” 

(04:34): 

And also, a part of it is around information for your friends that you’re going out with. So what are the things you need to look out for? At what point do you call an ambulance? Yada, yada, yada. So while it’s not an issue for us just yet, I’m feeling like it’s actually we’re moving in the right way, kind of like maybe as a mental health-wise as a society where we’re not punitively… And as parent, I would say to him, “No, you’re not drinking. No, it’s too dangerous. You’re not doing it, you’re not doing it, you’re not doing it.” I think most of us would be like that. But at the end of the day, we also know, probably from when we were teenagers, that that approach doesn’t work and they don’t listen. And that’s when you have these kids that were like me as a teenager that are jumping out the window, running away, drinking to excess just because my parents said that I wasn’t allowed to. 

(05:18): 

So I feel like him being able to come to us and go, “Actually, I do want to have half of Dad’s beer at Christmastime. How do I do that?” And his health professional’s going, “Absolutely, let’s do education around it so that you know what you’re doing.” And you don’t have to wait until you’re 18 because they know that’s too late for a lot of kids. So it’s openness and it’s sharing and just realising that so much of these kids’ lives are so controlled by their conditions that rebelling is kind of almost more likely in this cohort because, “There are all these things I can’t control. Well, I can do this.” 

Nadia Rossi (Host) (05:52): 

Yes, absolutely. And I think it’s never too early, like you mentioned, to start having the conversations. And then if your child knows that this is just a part of a conversation, then yes, they can come to you and get the education when they need it and be prepared. And also, yes, educating their friends around them and their supports who are going to be out with them. 

Nicki Walsh (Guest) (06:13): 

And I think also their friends and them knowing that nothing’s happening secretly. So they can always call us if they’re not sure and it’s going to be no big deal. Whereas, I think for me, if something bad happened when I was out as a teenager and I’d lied about where I was, what I was doing, who I was with, there’s no chance people were going to call my parents and go, “Hey, Nicki’s not doing so well. Can you come pick her up?” My parents would be like, “What do you mean?” So I think it opens up that trust in the friendship group and in your child to go, “If something bad happens, mum and dad know what’s going on and they know where I am and they’re going to come and help me regardless of whether I’ve made good choices or bad choices.” 

Nadia Rossi (Host) (06:54): 

But you’re also arming him with his own tools to navigate around those situations. And so he knows when he gets to that stage, he’s fully aware and so he can make his decisions and you’re giving him that kind of autonomy in a way and that power. And I think that can be really empowering for a young person to go, “My parents have entrusted me. They’re educating me. We have this openness, and now I can go forth and try things in a way that I know I can manage.” 

(07:22): 

You mentioned your daughter was 18 now. I wanted to go back to the time when your son was diagnosed and how that impacted her and when things were getting more serious with your son’s condition and you’re kind of pulled in all different kinds of directions, how you found time to support her or found ways where she felt like she wasn’t being overlooked because I know how hard that could be. 

Nicki Walsh (Guest) (07:46): 

Yeah. And I think so she was probably 14, 15 when he was diagnosed. They’re four years apart and they’re boy and a girl, so they’re not super close or tight. They’ve got different friends. And so they make out that they don’t like each other a lot. But when he became really unwell and he was in hospital, she was very worried. And she would catch the train into the city, into the hospital every day and just sit in the room, even though she didn’t have to, I think just to satisfy herself that he was okay and he was going to be okay. And so that was really actually quite lovely to watch because usually they hate each other. And so I think after that, there was a bit of an adjustment for all of us and things were really crazy for a while. And she coped relatively well. 

(08:28): 

She had a good group of friends and whatnot. But I think when it really impacted her the most was, again, when it became a reality that this was going to be our life. We’re going to have to spend so much time on this. And before going on holidays, we can’t just help them pack. We have to pack all of his stuff. And so she did become resentful of the time and energy that it was taking away from, I guess, the rest of our life. We tried really hard to have one-on-one time with her and to support her. And I think we did a pretty good job of that. But yeah, she definitely felt maybe jealous of the attention and the time that Riley was getting. And she has put that forward in ways like if she’s not having a good day, I say, “No, you can’t do that. You’ve got to do this instead.” 

(09:18): 

And she’ll go, “You only love Riley because he’s got diabetes,” or, “You don’t love me.” And actually the first time she said it, I was just like, “What?” But then I was like, “That’s actually probably a really normal sibling response to be jealous,” because what I wanted to say is, what are you jealous of? This is a horrible thing that he’s going through.” But actually in her immature kind of like 14, 15-year-old mind, she’s going, “Well, Mum’s with him 24/7, they’re taking him here, they’re taking him to appointments. It’s costing a lot of money and I am not getting any of that. “ 

(09:53): 

And so I think, again, it was one of those I’ve got to zip my lip. And as much as I disagree with what she’s saying, I need to recognise that from her side, there’s a bit of truth to it in that he is getting a lot more focus, energy, and attention is that moment where I take a step back and go, “Oh, I’m going to the shops to go shopping on late night shopping. Do you want to come with me?”, or, “Do you want to come and watch this movie with me?” And that time together, repairing our rupture in our relationship, usually that’s enough. 

Nadia Rossi (Host) (10:21): 

And often it’s just them seeking connection- 

Nicki Walsh (Guest) (10:23): 

Yeah. 

Nadia Rossi (Host) (10:24): 

… trying in their own way to say, “I want to spend more time with you and that connection with you that I’m seeing that’s happening over there.” 

Nicki Walsh (Guest) (10:33): 

Yeah, they don’t have the language to kind of go, “I’m feeling like we need to spend time together.” So they’ll go, “You love him more because of his condition.” 

Nadia Rossi (Host) (10:42): 

Yes, because they know it’ll get a reaction out of you and then bring you back to them. 

Nicki Walsh (Guest) (10:46): 

It’s also the expectations change. When Riley’s having a really rough time, we lower our expectations of what his role is in terms of our household, but hers doesn’t vary as much because her health is relatively stable. And so I remember from my childhood, just thinking that my brother got away with absolute murder. He never had to do anything. And my Mum trying to explain to me that because of his ASD and his behavioural stuff, it’s actually more trouble sometimes than it’s worth to force him to do the dishes. And from my Mum’s perspective as an adult now, I’m like, “Oh, that totally makes sense.” But as a child, I was just like, “He gets out of stuff because he’s got a condition,” and that is true, but that’s only half the truth. 

Nadia Rossi (Host) (11:28): 

Nicki, I wanted to talk about supporting your child’s well-being, and if you have any particular things that you have found or suggestions that you have for parents that are your go-tos to supporting your child’s well-being? 

Nicki Walsh (Guest) (11:42): 

Look, I think a lot of it is working on myself, and that sounds wishy-washy, but you can’t support your child who is struggling with their well-being if your well-being is shot as well. So I think this is where they’re like, “Put your oxygen mask on first.” It is that kind of idea that my ability to be patient and to support in a way that’s helpful is really, really compromised when I’m not doing well, I’m more likely to be snappy, to yell, to say things that are unhelpful. So I think monitoring how I’m going, getting myself support when I need to and taking a step away if I can, if there’s someone else around and just going, “I just need to get out of the house.” So monitoring my own well-being is key to looking after my kids’ well-being. 

(12:31): 

And I think knowing the warnings, the signs or red flags that your child is struggling is really helpful, particularly if they’ve got like a chronic illness because even medical professionals I’ve found will go, “Oh, it’s really normal to be anxious if you’ve got a chronic health condition, or it’s really normal to be a bit depressed if you’ve got a health condition.” And actually, I don’t agree with that. I don’t think that it is normal to be depressed and anxious. I think it’s common, but I don’t think that should be what we accept. I think that our kids should be feeling well and not anxious and not depressed. 

(13:04): 

So I think finding out what the warning signs or red flags are that your child’s not doing well, and it could be things like anxiety or depression or withdrawing or not eating or eating a lot or behavioural changes. And then when you’ve noticed those things, seeking some support from somewhere and not letting people convince you that that’s normal for a child that experiences hard things because it shouldn’t be. And so the supports I’m thinking of, there are things like Parentline in some states, there’s your GP. My son accesses psychology on a weekly basis. He has a lovely psychologist that he sits with for an hour and talks about things. 

(13:42): 

My son also has a psychiatrist who manages medication and diagnoses and things like that. And then there’s peer groups and friends and then online supports and stuff as well. So there’s lots of different supports. And I think being aware of them and knowing when to access them is the most important part. And I guess having a household that’s free of stigma around it because we all probably grew up or knew people who grew up in households where if you said that you were feeling a bit depressed, the response might have been, “Oh, get over it. Just go outside, go for a walk around the block, do some yoga.” And that’s not helpful really for many people. And I think recognising that children with chronic illnesses and parents of children with chronic illnesses have a much higher risk of experiencing mental ill health. So we’re more likely than the general population to experience mental ill health. 

(14:33): 

So, therefore, knowing that, knowing what the signs are, and then doing something about it. And it could be anything, you don’t have to do all these different things. But I say to people if you just do one thing about it, if it’s just make an appointment with your GP, then things will tend to kind of go from there. You just have to take that first step and speak to your child about mental health and how it is pretty normal when you have all of these challenges in your life to experience ups and downs and sometimes you need some help to manage that. So I think openness and speaking about your own mental health, my kids find it helpful when I speak openly about when I’m having a tough time. They ask me a lot of questions. When I go, “I’m feeling depressed. I’ve been a bit depressed for a couple of weeks.” They’ll go, “What does that feel like? And is that why you’re in your room a lot?” 

(15:14): 

And those conversations feel uncomfortable the first time you have them, but they’re actually super valuable because you’re giving your kids the tools to understand that this happens to lots of people. You can talk about it and nothing bad’s going to happen. And also it’s teaching them like, “Oh, Mum’s depressed and that looks like this and this is what she’s doing to get better.” And that cements itself in their minds that when that happens to them, they can do something about it as well. 

Nadia Rossi (Host) (15:38): 

And I think having that openness in your family just immediately removes that stigma. They can come to you and also you’re modelling that behaviour to your children and so that they know that this is a safe space. And you mentioned earlier about supporting your own well-being to support your child’s well-being. And I wanted to know what helps you to cope in those moments of worry and stress and how do you take care of yourself? 

Nicki Walsh (Guest) (16:03): 

Look, I think this is going to look different for everyone. So for me, great in a crisis. So if there’s a crisis situation, I am fine. For me, my real struggle points, and if anyone’s ever done Circle of Security, you’ll know Shark Music. So my Shark Music, things that trigger me that I find really, really hard to deal with is actually when my kids’ mental health is not doing well. So if Riley’s having panic attacks or Emily’s got a lot of anxiety, that will automatically make me spiral a little bit. And I think because as parents, we tend to blame ourselves whether we want to or not. And I’ll go into that space of, “Oh my God, I have issues. I’ve passed them onto my children. I should have never had children. So irresponsible, yada, yada, yada.” And so what I do in those scenarios is I think I let myself think because there’s no point in trying to stop myself from thinking those things because that just makes it worse. 

(16:55): 

So usually what I try to do is go for a drive or have a shower or somewhere where I can just be with my thoughts and just let myself think those things. “You’re a terrible mum. I can’t believe you’ve done this, blah, blah, blah.” And once I’ve thought them, then I have to make a decision whether I’m going to keep thinking them or whether I’m going to do something more positive about it. And honestly, sometimes I just go to bed and I just keep thinking about it, and that’s okay. I don’t make it anyone else’s problem. I just say to everyone, “I’m having a bad day.” But for the most part, I will go, “Okay, there are the thoughts. This is my Shark Music. These are the things that really trigger me when they happen.” And I will try to talk to somebody and usually a friend or I’ll text someone that I know will understand and I’ll be like, “This is how I’m feeling.” 

(17:38): 

And generally they’re like, “You’re a great mum,” and they’ll point out all of… And that kind of does make me feel better. I do regularly see mental health professionals myself. I think that’s really important for me to have my own help. So I just think finding out what works for you and doing that, having your own supports in place because it’s really hard work being the parent of a child, full stop, but of children with chronic illnesses, especially with that anxiety. So I see a lot of parents that really, really grapple intensely with anxiety around their child’s health and well-being. And I’m very fortunate that, I think, all of the supports I’ve had prior to Riley getting diagnosed have meant that I haven’t experienced that. But I certainly, in the groups that I was talking about and peer groups, there are parents that probably haven’t slept for years and have quit jobs that it’s intensely anxiety-provoking. 

(18:30): 

And I would say for those people, reach out, go to your GP because life doesn’t have to be like that. Be open with your children. And I think just be really reflective about if you’re feeling really down or anxious, ask yourself why like, “Why am I feeling so anxious right now?” Once you figure it out, usually you’re like, “Oh, okay, well, that could happen, but it’s probably not likely to happen.” So yeah, I think just having a range of different strategies in place and there’s helplines and things like that that you can call as well. 

Nadia Rossi (Host) (18:56): 

We talked earlier about how supportive relationships and friendships and community has really benefited you and your family. What can get in the way of those relationships? Do you ever feel like those moments of maybe isolation things get too heavy? And what can pull you out of that? 

Nicki Walsh (Guest) (19:15): 

Yeah. Look, I think in terms of relationship partnership, if you have a partner and you’re parenting a child with a lot of additional needs, it’s pretty normal, I would think, or common, if not normal, for it to get in the way sometimes because you’ve probably got your groove happening. It’s like having a newborn. I always relate it to having a newborn. You think that you got it and you’re like, “Yep, okay, we’re on the same page. We’re going to rock this parenting thing,” and then newborns cannot be managed or controlled. And everyone has different ways of doing it and everyone was parented differently themselves when they were babies. And so inevitably people have some friction with their partners and families and you have to communicate your way through that. It’s exactly the same, I think, as having a child diagnosed with anything, but a chronic illness is that it brings out the worst in you because you’re stressed and anxious and grieving. 

(20:05): 

I think it’s really important to continue spending time with them. Like Riley said, “I’m not my diabetes.” We’re not his diabetes. We’re still two people who met in grade 10 at school and got married and had two kids and that being diabetes parents was part of it, but we’re still us and we still need time away from both of our kids and the condition. And that can be really hard to get that time away. It doesn’t always have to be outside the house, but it can be when the kids are in bed. My husband and I are big fans of finding, we don’t like the same TV shows generally, but occasionally there’s a TV show that we’re both like, “Yeah, okay.” And so that will be our show. And so the kids will go to bed, we’ll sit down with ice cream, we’ll watch our show, and quite often that’s enough connection time to remind us that actually we are on the same page. 

(20:52): 

We’ve done well so far, and yes, diabetes has caused some friction and some arguments, but it’s not a big deal. We can come back together. So it’s the same as when I was talking about Emily not liking diabetes, being jealous of it, and just needing that connection time. I think the connection time, if you have a supportive partner, it’s very easy to make your whole life the chronic disease, but you are kind of then not prioritising that relationship. Obviously, relationship counselling, we’ve done that before. We’re not too proud to admit that sometimes you just need someone else in the room to help you, knowing what your roles are with the chronic illness and what their roles are and the parenting stuff that we spoke about initially, but also having a broader network of family and friends. And I know that can be hard for some people who live a long way from their families. 

(21:40): 

One person can’t be everything to you, I think, whether that’s a best friend or whether that’s a partner. You’re going to need a variety of people around you to support you in different ways. And so I think keeping those lines of communication open with friends and family and not allowing yourself to be isolated by the condition as well, it would be very easy for me to sit at home and though it’s easier for me to stay here, but actually I need to go out for dinner with my friends and I need to figure out who’s looking after Riley in this situation. And if you don’t have that, then finding it in your community through groups, are there any type 1 diabetes groups that you might have? 

Nadia Rossi (Host) (22:20): 

Absolutely. And I’m thinking about these moments of connections that you’re finding with family, your partner, community, and how that benefits you to open your capacity to support your son and your family. 

Nicki Walsh (Guest) (22:32): 

Yes, a hundred percent. And I think for me, and this won’t be for everybody, but for me, work is really important. I think if I didn’t have my job or I felt that I needed to quit my job because of his condition, we would all really suffer, not even financially, but just emotionally. Work for me provides the passion. I love it. I love what I do. I love being able to go into work, work on something I’m passionate about, and not think about Riley or his diabetes. I’m really passionate about what I do and I get to travel occasionally, which is really nice to be able to leave the house and leave all of my family and come spend two nights in a hotel is lovely. 

(23:13): 

And I think my colleagues as well are really great in terms of if I’ve had a really rough night or Riley’s mental health is not doing good, I’m able to go into work and they’re like, “How are you?” And I’m like, “Oh my God, things are not going well at the moment,” and they’re an additional support for me. 

Nadia Rossi (Host) (23:28): 

It’s also a reminder that you are your own person. I think in motherhood you can lose that. And I can’t imagine what it’s also like putting a serious condition of your child on top of all of that. 

Nicki Walsh (Guest) (23:38): 

And I think it’s really important to go back to what we were talking about earlier in the conversation around our children are going to grow up. I think at some point they’re going to grow up and they’re either going to move out or they’re going to go into supported care, or you’re not going to be that key person in their lives anymore. And I’m very, very mindful that I don’t want to get to a point where my kids are 18 and go, “Now I have to start a new job, start a new thing.” Yeah. So I think it’s helpful for them to see that I have a life outside of them. 

Nadia Rossi (Host) (24:09): 

Nicki, thank you so much for talking to us about this topic. I know it’s so complex and so wonderful to hear how you get through the ups and downs of daily life and supporting the well-being of your child. I was wondering if you could leave our listeners with one or two things from our conversation today, what would they be? 

Nicki Walsh (Guest) (24:29): 

Look, again, so hard to think of… I’m not an expert. So I guess the main things that I would say is number one, you are doing your best in a really, really difficult situation that nobody ever asks for. And it may feel like sometimes you’re smashing it and it may feel like sometimes you’re failing, but you need to remind yourself even at those times that you are doing the absolute best that you can at that point with the tools that you have available to you. And that’s the important part for our kids. It’s not that we’re perfect and it’s not that we’re managing their condition perfectly or their mental health perfectly or that we respond in a sensitive and attached way all the time to them. It’s that we’re doing our best. And I think on the other hand of that is accepting where maybe your best hasn’t been good enough, and that’s the hard part. 

(25:20): 

But that was a critical part for me to get to where I am today, is realising that through all of my years of parenting and chronic disease parenting, I have always done my best. I’ve always wanted my best for my kids. But on reflection, looking back, sometimes the best that I had to give them at that point in time still didn’t quite match what they needed. And that’s not my fault, not something I feel guilty about, but important to recognise and have conversations about where it’s like, “Mate, when I screamed at you because you’d done this, I didn’t have anything left in my tank. I was doing the best that I could, but I understand that screaming at you is not helpful and it’s not good enough and you deserved probably a Mum that was a little bit more regulated than that, but humans are humans and I’m really sorry. And next time, how might we do things differently?” 

(26:07): 

So I think the main thing that I want to say is around chronic health conditions. My learning’s been that it’s not the chronic health condition. Yes, that’s scary. Yes, it will change your life. Yes, things will never be the same. We all know that, but it’s how you manage it emotionally and how you manage it socially and how you manage your well-being and your child’s well-being and your family’s well-being that actually will shift the dial because we know if kids are feeling better and doing better emotionally, whatever their chronic health condition is, it’s likely to be doing better as well. 

(26:39): 

So I think if we focus on doing what we need to do to keep our children alive with their chronic health conditions and then really, really focusing on supporting them emotionally and socially and supporting ourselves and our relationships and their siblings, then we can have the best chance of getting the best outcomes from their chronic illness and them living the best life that they can, not just while they’re with us, while they’re little, but when they grow up. And they’ll maybe have their own partners and their own kids or living with other people, they’re going to have the tools and the language and stuff to use to say, “Actually, I was doing my best, but I understand that that wasn’t good enough and how can we do this better?” And then we’ve just made a huge generational shift in the way that we manage parenting. 

Nadia Rossi (Host) (27:22): 

Thank you so much for that. That is such wonderful takeaways I think any parent can take from this conversation, but in particular, those with children who have a serious health condition that they’re managing. And I want to thank you so much for your time and for being so open and sharing. So thank you so much for joining us today, Nicki. 

Nicki Walsh (Guest) (27:43): 

Thank you for having me. I appreciate it. 

Nadia Rossi (Host) (27:43): 

And thank you to our listeners for joining us. If you would like to keep up to date with our latest conversations, we’d love it if you liked and subscribed to our Emerging Minds Families Podcast channel. You can also find us on Instagram, @emergingmindsau, or on Facebook, @EmergingMindsFamilies. 

Narrator (27:59): 

Visit our website at www.emergingminds.com.au/families for a wide range of free information and resources to help support child and family mental health. Emerging Minds leads the National Workforce Centre for Child Mental Health. The Centre is funded by the Australian Government Department of Health under the National Support for Child and Youth Mental Health Program.