That’s Good to Know

The show aims to provide a space for sharing stories and experiences, with advice and support from professionals and experts.

So grab a cuppa and listen along as you do all your other things, to hear stories and experiences from parents who ‘get it’.

You can listen to all episodes of ‘That’s Good to Know’ through Spotify and Apple podcasts or through Wellington Access Radio.

Episode 1 transcript

Meredith: Kia ora, everyone. I’m Meredith, the host of the show ‘That’s good to know’. Before I started to interview guests and chat to other people, I thought it would be a good idea to introduce myself and let everybody know who I am and why I am doing this show / podcast in the first place. So, I bought in my friend Amy, also a previous podcaster and an experienced interviewer, to ask me the questions so I’m not monologuing for 30 minutes, because, you know, sometimes that can be a bit boring. Yeah? Would you say boring?

Amy: I put lonely, right? Yeah, lonely. It’s so much easier when you have someone to talk to.

Meredith: Exactly. That is the point of this show, isn’t it? That was a brilliant segue. See, you’re a natural. Because, as a parent of a child with disabilities, I have found that this journey can be quite isolating and quite lonely. So the point of this show is to create a space for other parents and caregivers to hear stories from other people and to realise that you’re not alone.

Amy: Which is such a beautiful message. It really is. So, should we jump in?

Meredith: Yes, let’s do that.

Amy: What a privilege it is to sit down and interview you because I consider you one of my best friends. I think you’re absolutely wonderful, and I see how you parent your children. I don’t have any kids, but I see you doing it, and I see you doing it wonderfully, despite some of the challenges that maybe (no one can see me, but I’m using my finger quotations) ‘normal parents’—whatever normal means—don’t have to deal with. Yeah. So let’s jump into it. So Meredith, what’s your story?

Meredith: Well, I guess I could go right back to the beginning, but I won’t. I’ll start sort of midway: I’ve got two boys; one is 14, and one is eight at the moment, or eight and a half, as he likes to say, which is actually not true. But anyway, my eldest started having seizures when he was about two and a half. So up until then, he was developing, quote, unquote, ‘normally’. That’s what we thought; we had no idea what we were looking for anyway. But he was meeting all the milestones that you would expect—walking, talking. He was a very social little guy. He loved to talk to people and be friendly. Yeah, he was a lovely, lovely little kid. And then, yeah, he started having seizures. And they didn’t start all at once; he had one, and then six months later, he’d had another one. These were the big tonic-clonic ones, where your whole body convulses.*¹

And so, it was a bit of a shock—it came out of nowhere. And when he was about the age of three, he started to have more and more seizures, to the point where we had to go into hospital, sometimes almost weekly, for him to have IV medication—anticonvulsants—to stop the seizures. So yeah, he was in and out of HDU a lot, and we were well-known by most of the staff and nurses. Amazing, amazing people there. This was down in Christchurch Hospital—we were living down there at the time. So it was a really tough, challenging time. He had all of the tests, the MRIs, the lumbar puncture—all of the tests to try and figure out what was going on. So from the age of three to five, he was quite unwell. It was a really turbulent time for us.

Amy: That must have been really difficult.

Meredith: Yeah, it was. Actually, my husband and I were reflecting on this the other day, thinking about what life was like back then. And we just did it. We were living on adrenaline the whole time. We used to tag team in and out of the hospital. I remember that I was also running at that time and training for a half marathon. So I would get up at 5 am to meet a group down in Hagley Park, to go for a run, come back to the hospital, then my husband would go to work, and then I’d tag team, you know. So it was just… I look back on it now and think, ‘Wow! That was hard’. It was really hard.

So we found a medication that did start to work, and his seizures became much, much less. We still haven’t had an acute admission for a seizure like that since he was around the age of, I think, five or six. So yeah, his epilepsy has become a lot more stable now (although he still does have seizures), but as a result of the previous ones, he regressed cognitively quite a lot. So he’s got an intellectual disability and autism as well at the moment.

So that’s him, and then my youngest was diagnosed Autistic at the end of last year. So we had some challenges with him, too. He started having seizures when he was three, but fortunately, we were able to keep them under control pretty quickly with medication, and he’s nearly five years seizure-free and not on any meds. He’s taken a much different path than his brother, but we still have some other challenges with him. So my, I guess, lived experience in the disability space has been roughly a decade or just over. That’s how I’ve come to where I am right now, and that’s my story in regards to my kids.

Amy: What was it like when you first realised that you’d joined ‘the club’?

Meredith: Yeah, that I’d joined the club, I know! I didn’t realise I had until much later on because everything was a whirlwind in the early days. I guess if you are thinking about other people who have similar experiences, I started out trying to find others who had kids who had epilepsy as well, and that was a real relief, in a lot of ways, because, again, you didn’t feel quite so alone. It was quite a unique journey that we were on, and finding other people who were going through it made you feel less like it was just you against the world, you know? So, I think finding that community was really important. Later on down the track, once we got the intellectual disability and autism diagnosis, I guess that was not necessarily a shock as such, but still—when that reality kicked in—it felt like it was quite a big deal at that point.

Amy: Was there a moment where it sunk in that you can specifically remember?

Meredith: Probably not a moment as such. But I think it was probably a rough time period. Not long after the actual diagnosis, once we realised this was real, you know, everything that we had been suspecting was actually happening to us. And there was, I guess, a bit of grief surrounding that as well, you know, just realising that this is real, this is happening, and this is what our life is going to be like now. That probably happened shortly after the diagnosis; I think he was around the age of six or seven. I can’t remember exactly, but it was a good few years after the whole hospital ordeal, when we were solely going through all that—because at that stage, we still didn’t know what was causing the seizures, why he had them, what was going on, and whether or not a medication would stop them altogether. So, it was a real progression of realising what was going on. And now, they suspect that the seizures are a symptom of an underlying neurological condition rather than a thing in and of itself. So that’s a bit of a different story as well from just knowing your kid has epilepsy…

Amy: That there’s some other things going on… And then when your second child was diagnosed, it was with autism, wasn’t it? What was that like?

Meredith: Also not surprising, I guess, because we had the experience with our first, so there was definitely an inkling. He didn’t start talking until he was about three, and then when he started having his seizures as well, we were, I guess, fearing the worst… I still remember it quite vividly, the day he had his first seizure, and what it felt like to see him doing that as well. I just thought it would go down the same road as my eldest. And I was just like, ‘How will I do this with two of them?’ You know, we waited quite a while to have our second child because we didn’t actually know whether it was a genetic condition at the time with our first; we weren’t sure whether it was going to be the case again. And so I guess it was always going to be a bit of a risk.

But when he got to the age of three and hadn’t had any seizures, we had thought, oh, maybe we’re going escape it this time. Then it just came out of out of nowhere. So, yeah, his diagnosis wasn’t a surprise. I think for me, at that point, it felt like more of a relief than anything else, just that I had been seen and heard in my concerns and the things that I was thinking were going on for him. To actually have that and written down in black and white, was kind of like—okay—this is actually happening. This is real. And I think it also helped us understand him a lot more, to know this is what’s going on. Now, how do we move forward from here? Rather than being stuck in limbo, not knowing, is it autism? Has he just got some behavioural challenges? To actually have that confirmed was really validating, I think, in a weird way.

Amy: No, it makes sense. It validates that you’re not crazy and that you are a good mum—you knew.

Meredith: Because I think a lot of the time, parents feel like they’re being blamed for their kid’s behaviour when it is actually something else that’s going on.

Amy: So you’re making this podcast, which is so exciting.

Meredith: It is exciting. It’s really cool, and I’m having lots of fun doing it so far. It’s been a long time coming. I’ve wanted to do this for about five years.

Amy: So why now?

Meredith: I think it was just that I got to the point where I thought if I don’t do it sometime soon, I’m just not going to do it. And I could have probably done this at home with my USB mic plugged into my computer and, sort of having a chat with myself. But I wanted to commit to something. And I thought, you know, if I’m actually doing it in a radio show format, then I’m going to commit to it, and I’m going to do it.

Amy: If you have to book the studio, you’re going to show up!

Meredith: That’s it. Yeah, exactly. So why now? I guess it came out of my current role that I’m doing. I have been one of the Wellington Coordinators for Parent to Parent for the last six months. I’ve been facilitating support groups and workshops and events and helping—over the phone most of the time or by email—other parents with kids with disabilities or neurodivergent kids or ones with health impairments. So I have spent that time talking to a lot of parents and trying to support them through the process as well.

We have a Support & Information service which can answer any question whether you’ve got a diagnosis or not, on any disability. So, I’m often asking parents questions, getting information out of them and passing it on to the team to get them some help and support. It’s an amazing service. So great and so helpful for a lot of people.

I was really excited to get this role because it’s something that I’ve wanted to do for ages. I’ve been in this ‘game’, I guess you could call it that—most parents I talk to hate the word journey, ‘It’s a journey!’—for over a decade now. I feel like I’m at the point where I have something to give back to other people, and I want other people to feel supported in an area that I didn’t have support at the time. That was why I was interested in that kind of role, and then, as a result, I’ve met a lot of parents and heard a lot of amazing stories—real stories of hope and resilience.

We run monthly support groups, where parents have a safe space to come and talk and get things off their chest, but also share experiences, stories, and things they are going through at the moment, and hear that support from other parents who get it. Just being in the room when you know everybody else is going through something similar, and can actually go, ‘Yeah, that’s the same as me!’ It’s validating.

Amy: I can imagine the relief and the joy not to have to explain every part of your life, because those people get it. You don’t have to explain why you’re feeling that way, or what’s going on in certain respects, because they’re living the same game.

Meredith: That’s right, the same game. So it’s just like walking into that room, as you say it, is a relief, and it’s funny, the sort of things you all celebrate together. Not so long ago, one of the mums—we go around the circle and all kind of share where we’re up to, what’s on top of the moment and what’s going on—she said, ‘Well, my child’s finally being diagnosed!’ And everyone just cheered!

Amy: Because it’s a fight!

Meredith: Yeah, it is. And you are waiting a long time. In some cases, the waiting lists to get an assessment for autism or any other kind of developmental issues can be 18 months to two years. So it’s a long time coming for many parents and it’s so funny, because that probably wouldn’t be celebrated in many places.

Amy: Yes, people wouldn’t understand the situation, the struggle to get that diagnosis.

Meredith: That’s right. Or even, you know, things that might seem small or insignificant to some people in their parenting journeys are huge. Just being able to get your kid out of the house, into the car, to the school gates. And they might make it through the school gates and stay for an hour.

Amy: But they made it through the gates, right?

Meredith: Yeah, that is a huge deal for a lot of people, because, you know, schooling, education is a massive struggle for a lot of parents.

Amy: And it’s a space that’s not made for everyone, which is horrible.

Meredith: That’s right, it’s so horrible to think that that’s the case. But it is true. It’s not for everyone. And I know there are a lot of teachers out there and many people who really do ‘get it’ and are working hard to make a difference.We’ve got a couple of those in our life at the moment, which I’m very, very grateful for. But unfortunately, it’s not the case everywhere. It’s not everyone’s experience, which makes it really tricky for some parents.

So yeah, just like hearing those stories and being in that space, I thought, wouldn’t it be great if we had a way of sharing these stories with a wider audience? The people who may be unable to make it to a support group for any reason, because it is difficult. The ones we run during the day, parents are working and things like that, and then some of them are in the evening—well, you’re just pretty spent by the time the evening comes. So it’s a real, hard effort to get out. And yeah, kudos to those who make it—it’s a considerable effort. I thought, well, how about something where we can replicate the same sort of thing that happens in the support group, but over the airwaves, so anyone can listen in the comfort of their home, or their PJs, or in the car on their own, or on your run or walk or doing the dishes? Yeah, so that’s the reason for creating something like this, and I just really hope that it will be helpful to people.

They may not get something out of every single episode, but they may hear one sentence that one person says that makes them feel less alone, or that really resonates with them, or that might be an idea or something to try that they didn’t think of before that makes their life a bit easier in some way. So if we can do that, then I’ll be stoked.

Amy: Yeah. So, hearing that one line, if you could go back to the beginning of your journey, the middle of your journey—or the game, I should say—and where you are now in the game. What do you think those sentences were that you needed to hear, and what do you need to hear now?

Meredith: You’re really are good at this! That’s such a good question. Yeah, I might have to write that one down for next time [writes down the question]. I think right at the start, I just really needed to hear that I would make it through because I just didn’t think I would. And there were some days where I just wondered how long it would last, and how it would all play out.

I vividly remember one time when we were in Christchurch Hospital, in one of the children’s wards overlooking Hagley Park. It was autumn, and I could see all the leaves falling off the trees and on the ground. And it was—I’ve always loved being outside in nature and walking around, and I love Hagley Park, it’s got some very special moments for me over the years of my life—I remember seeing some people kicking about in the leaves. And it was a beautiful sun-shining day, a crisp, you know, Christchurch autumn day, but beautiful blue skies. And I just looked out there, and I just went, ‘I wish I could just be walking outside right now and be normal and have a normal life and not be having to go through this’. I remember writing a little poem to myself a couple of days later, just saying there will be other autumn days, there’ll be other times that you can do that.

So I guess, right from the beginning, just to know that this wouldn’t last forever. And yes, it’s a hard and a rough time, but there will be other autumn days. There will be other opportunities to walk through the leaves and, you know, feel the sun on your face, and things like that.

And I think probably what I would need to hear now is similar to what you said at the start, that you’re just doing a good job.

Amy: You so are, and I mean that.

Meredith: Thank you. Yeah, I know, I can see it on your face :-).

Amy: For the people listening, I really do! I can imagine it must be so difficult because I know from just watching how the world works with parents and kids. And I know, you know, parents like to brag about their children and about their milestones, but your kids milestones are going to look different, most likely, to other children. But that doesn’t mean that you’re doing a bad job. It just means life is different. But different isn’t bad.

Meredith: No, it’s not. And I think you get more used to it the longer you’ve been in the game. So just keep going, and you’ll find a place where you can let go of a lot of that stuff. It doesn’t mean that it never crops up again, because it absolutely does. An example of that is this time of year—we’re recording this at the end of November—with schools coming to a close, you have a lot of awards ceremonies, prize giving, things like that. And your kids aren’t always in the running for those things, especially if they have behavioural challenges, because who wants to give a certificate to a kid who is, you know, lashing out or being disruptive?

Amy: But trying their best…

Meredith: But absolutely trying their best, and when it takes the kid two or three times more energy, effort, processing space in their brain, to cope in a classroom…

Amy: Which is crazy. You would think you would want to celebrate that, right? It’s actually such a huge celebration in comparison to the child who finds everything quite easy.

Meredith: Yeah, it is. And we need to celebrate kids for everything. But I think one of the things that I would love to see more of, and I guess this is something that I advocate for, is inclusion. Whatever that looks like in whichever sphere of society, but especially in things like education and sport and things like that, to recognise that not everybody is starting on an even playing field. Excuse the pun; it is a game. Not everybody has the same ability to cope or process information as everybody else. So if we can just become more aware of that as a society, I think the experience of parents who do have kids with extra needs or disabilities would feel a lot more included. And it doesn’t actually take much, sometimes you don’t even need to spend money on it, you know. It’s more of an attitude; it’s more of a societal shift into making an effort to understand and learn how these kids can be included. It’s different from, you know, being welcomed or tolerated or accepted—inclusion is a lot different from that. It’s actually making the environment, or whatever it is…

Amy: …holding space. Making space. Understanding. Making the effort to understand, if this is new to your world and you don’t know anyone living in the game, making the effort to understand.

Meredith: That’s right. I’m now at the stage where I don’t blame others for not understanding. It’s not their fault—if you don’t know, you don’t know. I didn’t know anything about this world before I started in it. So I don’t feel I want to have a go at or call out people. Equally, I don’t have the energy to educate everybody. We see this in a lot of other minority groups as well. And I think that it’s more of an attitude shift than it is about necessarily having to spend a lot of money. Obviously, we need more funding for many different things, which will definitely help. But how can we work with what we’ve got now? And one of the whole ideas around the Enabling Good Lives principles and social movement is, ‘How do we enable our disabled people and to have good lives?’

Amy: And everyone deserves a good life.

Meredith: Exactly. Yeah. How can we make that happen? So, I don’t actually remember what the original question was! I’ve veered off.

Amy: I think also… just reflecting on what you’ve just said, we talk about celebrating kids and their milestones and their achievements, but I don’t think we, as a society, do a great job of celebrating parents in general, then also the parents who are parenting children with different needs and maybe added needs. How would you like to be celebrated? Because in some ways, I think when we talk about it, it’s a bit of an awkward question, because you feel like, oh, normal parents don’t get celebrated, and you don’t always want to feel different, but at the same time, your life has challenges. It looks different to your average—I hate the words normal and average, because no one’s average, no one’s normal, no one’s common… We’re all just doing our best, and we’re all just trying to make it work with the cards that we’ve been dealt, the life that we’re living. So, how would you like to be treated differently?

Meredith: I really love thinking about the concept, ‘how would you like to be celebrated?’ Because to me, I guess, even thinking about being celebrated probably looks different from how you would think. I’m not after an award, ‘Mom of the year’, you know all that jazz! I think the times you feel the most proud as a mum or the most recognised or acknowledged is when things happen for your kids. And so it could be even something as simple as feeling like you’re being heard by, say, your child’s teacher, for example, and welcoming the opportunity to have a kōrero with you about your child, and sitting down and trying to really understand and appreciate what it’s like for you as a mum of this child, and not putting pressure on you to do a certain thing, be a certain way, you know?

Amy: Just having that open conversation, not coming in with preconceived ideas, or judgement or an outcome, right?

Meredith: Yeah. And I think that in many places, that is a way that you feel like you’re being celebrated, because through your child, you’re both being accepted and included into a space that clearly isn’t built for you—doesn’t always work for you. And so really, the key to my heart is through my kids. Is through the way you treat my kids. If you treat me with respect and inclusivity and acceptance, that’s cool, and I love that, and I respect you so much more when you are like that towards my kids.

Amy: To wrap us up – what are your hopes and dreams?

Meredith: For me, for my kids? For my kids, I just want them to have a good life. I’d love for my youngest, especially, to have some friends. Be invited to playdates and birthday parties. He was invited to one a few weeks ago and had a lovely time, lovely little friend that he has – it’s very cute. For them to be able to have experiences that fulfil them – that can make them happy and things like that.

Then, I guess for me, to carry on being an advocate, somebody who speaks up for this particular minority group that I have found myself involved with. And trying to help that push towards a bit of a change in society as a whole—a massive task that’s not going to happen overnight—but even just starting in your own community, where you are at the moment. Just learning more about how you do that, the way to speak to people, the way to encourage that without feeling like you are trying to ram information down people’s throats. I think a lot of it comes through how you treat people and how people see you treating your children, and people can learn that way rather than you having to tell them a lot of the time. And being someone who leads by example. That doesn’t mean I always get it right. There are plenty of times when I absolutely do not. But being human, recognising that I make mistakes and owning up to them and being able to learn from them. We are all just doing the best that we can!

You can listen to the next episodes of ‘That’s Good to Know’ through Spotify and Apple podcasts or through Wellington Access Radio.

*¹ Also known as a “grand mal” seizure, a type of seizure that involves a stiffening phase (tonic) followed by a jerking or twitching phase (clonic), causing a person to lose consciousness and experience violent muscle contractions throughout the body; it’s considered the most recognisable type of seizure most people picture when thinking about seizures.