Growing Bold and Friendships through Motherhood

Growing Bold and Friendships through Motherhood

Welcome to the Grow Bold with Disability podcast, brought to you by Feros Care. A podcast dedicated to smashing stereotypes and talking about the things people with disability care about most, to help us live bolder, healthier, better connected lives. I’m journalist, Pete Timbs. And I’m Tristram Peters. I work for Disability Service Directory, Clickability and am a wheelchair user living with spinal muscular atrophy.

Today's episode of Grow Bold with Disability is Growing Bold and raising kids with disabilities and additional needs. And our guests are the hosts of the hugely successful Too Peas in a Pod podcast - Kate Jones and Mandy Hose. In this episode we will hear how these two mothers from Victoria came together to find a voice in the silent world of parenting multiples with disabilities and additional needs. And in doing so, they have started their very own revolution. Kate and Mandy welcome to Grow Bold with Disability.

Thank you so much for joining us.

We've been waiting for this one have we not Tris?

We have indeed.

Oh, yes, Sorry. We've been home-schooling. So, we pushed a lot of people aside. While we've had to be Year 8 Coordinator and principal of our school. Yes.

And has anyone been down at detention or anything?

A few times – me. I put myself into detention, in the car, many times. Please send me to my room.

It's amazing and for all the parents out there doing such great work. I mean, I’d love to take us back in time to start with. You both have twins, very close in age. They are all fourteen. Kate, when you were told your very first scan that the boys weren't going to make it, that it must have been such a hard thing to comprehend. How did you feel at the time?

Um, I think I was devastated. I was just completely shell shocked because I'd had three other children. I’d had miscarriages, so I know things could go wrong with pregnancy. But it never crossed my mind that I would have twins and have that brief moment of shock and excitement that I was having them and then to be told that they were gonna be taken away all within 10 minutes.

Now, Mandy, you're similar. Obviously, the kids are of similar age. So, you were pregnant the same time. You guys didn't know each other at this stage, and this was your first pregnancy.

Yes, it was.

You had a pretty normal pregnancy up until a certain stage, didn’t you?

My girls were fraternal so there is, you know, a little bit less risk with that. They had their own placentas, their own sacs of fluid. And yes, it wasn't easy, but there was nothing flagged. And then I just went into spontaneous labour at 31 weeks.

Which is pretty darn early? So, what was going through your mind when this happened? It sort of just kicked in in the middle of the night, did it?

Yeah, I just went to bed. We've been out with friends and my waters broke at about midnight. And then we made the trip to the hospital and I was just devastated because I just knew this wasn't what we hoped for. And I was scared. Very, very scared.

And your girls have cerebral palsy, what does that mean exactly?

They both have a hemiplegia, which is, you know, there's different types of cerebral palsy. So, a hemiplegia affects one side of their body. So, one of my twins has a right hemiplegia and the other one has a left. And my daughter with the right hemiplegia is really affected around her whole right side of her body. And my daughter with the left is mainly just her leg. So, you know, as you know, Cerebral Palsy is a wide, wide spectrum. So, for my girls they have hemiplegias.

When did you realize that the girls had Cerebral Palsy?

Ah, well, my first daughter, one of the twins, I always worried about her from the minute that she was born. She was the littlest. She had more time in ICU. And I was, you know, suspecting something around about four months old. But it wasn’t until she was eight months that we went to the maternal and child health nurse and I said, “something is going on because I have a twin here who is doing rolling and sitting and using two hands and she's not”. So that's when we started the journey of diagnosis.

And Kat, conversely, you have three older kids and then the twins came along with additional needs. You mentioned being devastated. How did it impact the family?

Well, I mean, there was the shock of thinking that the pregnancy wasn't going to result in live babies. Then we managed the joy of having live babies. They were born at 33 weeks, which is a little bit further along the Mandy's. And we had a different journey because we knew that there probably would be a couple of issues. We were watching for things, but I would say the impact on the family was a tsunami, and our family is completely different.

So, what did the older kids, you've got five kids so there are three older kids, what was it like for them?

I mean, it's pretty hard for little ones to understand that there is something going wrong with their siblings. Well, this is the most amazing thing about children. And if we could all be like children; the world would be a better place. They just take things in their stride and they accept things, and they probably don't obsess about it as much as adults do. So, whilst they knew that it was scary that the boys may not be born, and they were worried about that. Once the boys were here that's just who they were. So, you know, there really hasn't been that much more discussion. I mean, once school came along and things got a bit tricky, we discussed more things. But for them, this is just their brothers who have, (can we swear on this podcast?) a shit ton of energy.

So, you mentioned there that two very different paths that both of you have taken. How did you converge? How did you guys meet?

Well, there's an Australian Multiple Birth Association. So, we met sort of through them. They had an online group before Internet stuff was cool. Before Tinder. Before Facebook. It was very cool in its own right. Who's got time for Tinder. So, we kinda met on a Tinder for Mums. So, we went for a dinner, met each other and the rest is history really.

Mandy, what drew you together?

Well, I think, I was trying to find people that had premature twins, so that was a challenge for me because I couldn't quite relate to people who were having their twins at term, so on time. And so, whenever I’d be in a twin group with moms, I was trying to find my people. And so, once I met Kate and heard her story and heard how difficult the pregnancy had been, and even though that was different to mine, I recognized that pain. And I just, I don't know, we just hit it off. And we laughed and we had a lovely group of friends as well, but we laughed, and we had lots in common and also lots not in common. But we lived five minutes away from each other, that helped. And we just got along.

When you say you laughed? Did you cry a lot as well?

Yes. Yes.

Heaps.

So, it was like therapy as well. Someone who could understand where you are actually coming from, like deep down, not just on a surface level?

Yes, and that ability to be able to say what every you want to a person. So, for me to be able to say anything that was on my heart, I could say to her and she would just accept me and listen and never judge. That's a gift. Yes, it is a gift. We are were really, really lucky.

I always know that myself being a powerchair user, I never feel quite comfortable talking to others that haven't gone through the same experience with me. When I meet a mate that is another powerchair user, there's something deeply powerful and empowering about sharing their stories with them. It's very much the same for you guys.

And I think when we started the podcast, it was probably therapy for ourselves and an Australian voice. But we had no idea that there would be this huge connection with people, even outside of the twin world, outside of the disability world, outside of additional needs, there's just, I don't know what it is, but I think, I don't know, it's just being raw and honest and sharing your truth. And sometimes life isn't perfect. Um, people just love it.

Yeah, you’re not pretending. People like to have this big plastic-coated world that goes on Instagram and Facebook and everything's great and I'm on a holiday every second week. Whereas you guys are just, you say it how it is. Now before we get into talking about the podcast I wanted to just bring up this point. You're both raised Christians. Mandy, I think was pretty hardcore.

No, that was Kate.

Sorry.

That is OK, people get us mixed up all the time.

Funny that! You’re like Too Peas in a Pod...But you both lost your faith after the children were born at different stages, after the children born. Was that something that you bonded over as well?

Yes. Hugely. I think Mandy is my only friend who's been through that for a similar reason. And I think that kept bringing us back together because when you are raised in a faith community and you leave it, it's a huge sense of loss. Like moving countries and starting all over again. And we had this person that was going through at the same time. It was just unbelievable to me. To find someone who had twins, had them prem, was worrying about their development, was leaving the church, lived five minutes from my house, was nearly as funny as me.

It's almost like God put her there.

You won’t be the first person to say that. Nor about the podcast coming about.

So, what was it about? What was it about the Christian churches or whatever you were involved in that you wanted to break away from them after all these years of like growing up in them?

I just was sad. I was sad for my girls having to suffer. And probably you should be able to go to a church and feel sad. And no one stopped me from feeling sad. And people loved me through all of it, and that's why it was painful to leave. But I just couldn't reconcile what I was witnessing my children suffering, and I just couldn't work it out. So, you know there is nothing sinister. People tried their very best. And also, I was really tired. Going to church all the time takes a lot of energy. Yeah, so it was just even practicality. I was really tired and worn out, and I was very busy doing therapies and operations. And my world was very different to Mandy before having babies.

So, Kate, what was it for you bailing on the church?

Yes, so mine was a bit different. I actually was having a scan, and all of my scans were at a beautiful private practice in one of Melbourne's very leafy suburbs, and sometimes I'd have to go to the big Monash Medical Centre and sit with all the other high-risk pregnancies. And I remember having a scan and looking at all these women and no one talks in there. There's no chat about why you're there, because we all don't know if there's going to be a heartbeat when we go into the next room. So, there's no banter. And I remember coming home and crying in the shower and had this real clear thought. Is God only going to save my babies because I'm a Christian and I’ve asked? Is he not going to save those other babies? And then I thought, I can't have a God in my life that only helps people who ask him because as a parent or as a human, if you see someone fall over you just go and help them up. They don't have to ask you, and it just flipped to my view on God. So, I'm not saying there's no God, but I'm saying that sort of a God can't exist for me, and it's not because my children have additional needs or diagnoses or struggle at school. I don't have any blame or anything. I just can't reconcile. So that's what it was.

And all these different aspects that you've bonded over. Let's now talk about the podcast. Too Peas in a Podcast. Where did the idea itself come from?

Well Mandy and I are big podcast listeners. We consume a lot. We would go out for dinner and then we'd say, “you know, we could do a podcast” and then would leave it at that. And then one day we said, “all right, let's do it” and we did.

The technical side of it, let's not get too deep in it. But, you know, a lot of people do that, they sit at a dinner party and say, “we should do our won podcast”. How hard is it to do?

Well, I'm really lucky because my son does it all. Yeah, without our sound engineer, impossible. So, I'm very thankful to him. Yep.

So that's all you need. Is a son who's pretty technical and a room.

Yep. That's it. And I don't even have the son. Use someone else's son. I just can't believe that I can come and sit down and talk. And I'm just so thankful because it's easy for me.

And how much planning goes into each episode?

Well, some of us do more planning than others. Pointing fingers.

Do you carry her Kate?

Look someone has to carry it, don't they? We have other people like. Well, like for that first episode, I asked a whole lot of my friends to write right to us about what should we call the podcast? What are the names. And so, we got, you know, in the beginning, we had lots of people coming in, sort of helping us get it started. And then we just decided to just talk about our journey. And we broke episodes down into the pregnancy, the birth, the time in ICU, the time in special care, the time their home, the first year of school, all those sorts of things. And then in between that, we brought in, our friends. So, I just love the fact that we're getting people who people have never heard of before telling their stories. I'm really proud of that.

You spoke about the potential names of the podcast there. One of my favourites is I'm so fucking over this. Which is hilarious. How often do you feel that? How powerful is it just to say that phrase?

Well, it, you know, it could be every day, depending on, and that's normal parenting, too. But sometimes I'm fucking over speaking to physios or surgeons or health professionals or teachers or, you know, all. It's not just about the children. It's also, sometimes, the outer pressures as well if that makes sense. Yeah, and being over other people's perceptions of what my children's abilities are and that really gets my goat. I'm just over it and I'm over what other people think.

Yeah, fair enough. Now, actually, there's another one in there that was a suggestion that I was listening to in one of your podcasts - just a healthy baby. Now why did that phrase originally resonate with you guys? What is that – why is that such a big phrase?

Well, I think when people say, “do you want a boy or a girl when you're pregnant?” the politically correct thing to say is, “oh, I just want a healthy baby.” And then where does that leave the one in almost five of Australians, by the time you get to 60 or whatever that has a disability, you know, how does that make you feel as a parent, when your child who's amazing and the most awesome human you've ever met isn't clinically defined as healthy or other people wouldn't think they were healthy. So, I find it hurtful and confronting because I think really, the goal is to have a child that's kind, a child that brings joy or a child that, you know, makes you laugh. And so, you know who's to say what healthy is or what normal is? I don't like it. That's just me, but I don't like it. When I heard it, it used to kind of stab me in the heart because I'd be like, ah, so you think you don't want a family like mine? And I love my girls more than my whole heart. And so, if you haven't experienced that stab in the heart of someone saying that to you then you would never think anything of it. So, when we brought that episode up that resonated, people were like, wow, I've never thought of that.

Very powerful. Yeah, yeah, absolutely. In terms of delivering those truths, there's so important to breaking down stereotypes and changing perceptions.

Is there anything off limits in the podcasts, anything that you don't table? You can tell us now.

I think, look, we don't use our children's names because we're very aware that they have a story to tell as well. Not just like, I'm telling my story, but that's not their story, if you know what I mean. So that's off limits for me. And for me I don't talk about all of the diagnosis that my twins have because some of those diagnosis they are not willing to share yet. And I think it actually doesn't matter, they're just not neuro typical. So that's enough. It’s not really anybody's business. That's their journey when they want to tell that story, and I think we probably don't really go into our sex lives do we Mandy. No, maybe the 100th episode.

You were mentioning Tinder for moms earlier.

But truly, I don't really want to talk about my marriage because I think that is also someone else's story to tell. So other than telling funny anecdotes, that is sort of about it. That it can be a really big one. Um, you know, statistics are high in relationship breakdowns. And so, you know, I'm just sensitive about that.

Fair enough now Kate you mentioned the kids. How aware are they of the podcast? I'm sure they probably don't listen to it. But do they think it is what mom is doing, is it cool is that sort of thing? Or you're not cool anymore?

Well, this is the joy of children that are not neuro typical. So, my boys think supercool, they love it. They're all about, you know. So, they don't listen because they not into it. It's not this thing, but they can, one day maybe, um, but they love it. They think it's great. They think it was amazing that we're on The Project. We've got to meet some really cool people, and they really love it, and yeah, but for the most part, you know, they just go about their lives, and they don’t really care what I do.

Mandy, what about the girls?

Yes. So, one of my twins also has an intellectual disability. So, we call her Molly on the podcast. She loves it. And any time I'm in the car, she makes me put it on. She is super proud. Her twin, my other daughter, is a little bit more cautious. She's nearly 15. So, I'm super daggy embarrassing. So, she hits me with some hard truths sometimes. She's like, do you listen to your own podcast again. I think you're a narcissist. She's awesome. And so, I'm OK with that. And my nine-year-old absolutely loves and has been on a couple of times talking about being a sibling. So yep. Overall, apart from one daughter who's nearly 15 and pretty like I think they're meant to not really like me. I think it's only fair enough.

Yeah, two out of three isn't bad. Yeah, I reckon. In terms of love for this podcast, it's not just in the multiples with disability groups. It's doctors and professors and teachers and nurses. Why do you think this is? Why is it resonating so strongly even amongst those industry professionals?

We don't know. I think maybe it's because when you are a patient or a parent of a patient, you're too vulnerable to speak your truths when a doctor says a real asshole thing to you. Yeah, and when you're a parent, you have to be with that teacher for the whole year. And when you have a child with additional needs or disabilities, you are advocating all the time. So, you have to be careful what you say. Mandy and I don't have to be careful because we're not directing it at anyone. So those people are hearing it without a judgment, which sounds weird, but we get constant emails from them saying all of the just life changing. And can you come and talk to my group? Mandy and I have recorded a podcast for a group of paediatric students. I'm amazed because, you know, both Mandy and I hold diplomas. We are not really double degree chics. We are not learned ladies. So, we are surprised people want to listen. But they do.

Yeah, they're hearing the home truths but it's not offensive for them. They go, “oh, I didn't realise across that way” because they kind of, I guess that you're a patient, but you just kind of like a client coming through the door. And then an hour later, the next one comes through for them. And I think when we start off from having babies prematurely, I felt it, don’t know if all prem moms feel it, but if I wasn't being nice to the nurses, I was scared that they would be mean to the babies, which is ridiculous. But there is just that funny feeling. So, you start parenting that way. It kind of stays with you for a long time. So sometimes we do have to be polite because, yeah, we were in a long-term engagement with some of these people. You know, our surgeon we've had for eight years at The Royal Children’s. So that's a paediatrician until they're 18. I mean, you've gotta be alongside them.

So, as Tris said, that has been hugely successful. The podcast. What's next for our Too Peas in a pod? Are there any book deals, TV shows, your own radio show? What's happening?

Oh, imagine. Well, the pandemic ruined our live shows because the tour had just started. So anyway, that's OK. We'll get back out there. We will. And we did have a lot of speaking engagements that have all been cancelled. I’ve just taken the calendar off the wall. But we are writing a book. So, you know, if you'd like to be in the book, let us know.

I want to read the book. Are you halfway through at the moment, when can we expect it?

No, we’ve hardly started. Hopefully it will be completed this year, so yeah.

All right. Thank you. So, it’s not going to be taking over from Oprah or Ellen or anyone like that on our TV's?

You never know. We will never say never.

You guys would have the best TV Talk Show ever going around. We'll try to get this in front of some television bigwigs and see what they say.

Sure.

So, Kate and Mandy, we love to finish each episode by asking the question “what is living a bold life and what does it mean to you?” So, let's go, Kate first, what is living a bold life mean to you?

So, living a bold life to me as a mother of my beautiful twins means not being afraid to be an advocate, and sometimes that's scary. And sometimes I cry and sometimes I lose my shit. Um, but it means going back and doing it again. And some people with disabilities and additional needs have an amazing voice for themselves, and we love those people. But some children don't so for a little while or a long while, we have to be that voice and, believe it or not, it takes quite a lot of boldness. So that's absolutely what it means to me.

Fantastic. And Mandy?

For me one of the things that I wanted to do in starting the podcast is to make sure that women, particularly mothers, did not feel alone anymore. So, I want to be bold in telling the truths of how it feels to be raising our amazing children and for people to not feel alone. So ,I just want that boldness to come through. You can tell us how you're really feeling, and you are not alone anymore. Because it's hard to feel alone and broken on the ground and crying, thinking no one knows what it's like. And so, I just want to be bold in telling people we are with you.

You are absolutely succeeding very well in that bit. Definitely. Kate and Mandy, thank you so much for joining us today on the Grow Bold with Disability podcast brought to you by Feros Care. And our listeners can find out more about Too Peas in a podcast. Head to the girls Facebook page or check out their website. Actually, the Facebook page should have some new dates coming up soon when the tour resumes, I’m presuming ladies?

We hope. We'll be promoting it don't you worry. So, all that information having us on Thank you way.

We've been waiting for this one and you didn’t disappoint. Thank you so much.

Thank you, guys.

Thank you for listening. And if you have enjoyed today's episode that make sure you subscribe to the podcast, Grow Bold with Disability and if you like what you heard please take a few moments to pop over iTunes and give this a podcast a quick rating so we can continue these conversations and encourage people to grow bold.

This podcast is brought to you by Feros Care, an NDIS partner delivering local area coordination services in Queensland, South Australia and the Australian Capital Territory. Feros Care is a people care organisation committed to helping people live bolder lives. We call it Growing Bold and for over 25 years Feros has been making it real for both older Australians and those living with disability. To find out more, head to Feroscare.com.au.

The content and views discussed in this podcast series are those of the individuals involved. They are not necessarily condoned by, or, are the views of Feros Care or its employees.