Growing Bold and parenting with a disability

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• Nat Bartsch: Press
• We've Got This: Stories by Disabled Parents

Growing Bold and parenting with a disability:

Pete: 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 journalists Pete Timbs,

Tristram: And I'm Tristram Peters. I work for disability service directory, Clickability, and I’m a wheelchair user living with Spinal Muscular Atrophy.

Pete: Today's episode of Grow Bold with Disability is Growing Bold and parenting with a disability. And our guest is Nat Bartsch, an award-winning pianist composer, and she works in classical, jazz and children's genres and is on the Autism spectrum. But her most important role is as mum to four-year-old Will. In this episode, we'll learn about Nat and her husband, Jeremy Hopkins. Nat was diagnosed with bipolar at a young age and Jeremy with ADHD. But it wasn't until after the birth of their son Will, that they sought further diagnosis, and they discovered they were both on the Autism spectrum. Nat, welcome to Grow Bold with Disability

Nat: Hi. How's it going? Thanks for having me on.

Tristram: Thanks for coming on. So today we're talking about parenting with the disability, so let's start back at the beginning. How did you and Jeremy meet?

Nat: That's a really funny story. So the first time we met, um, so Jeremy has been an actor since he was a child, and he was acting a role in the Saddle Club TV show, and I was an extra in that same episode. However, at the time, we didn't really chat much because apparently actors don't really talk to extras. And then, about like, five years later, I started studying jazz at the Victorian College of the Arts, and Jeremy was studying drums in the year above me. And then I got to go up to him and be like, Hi, you don't know me, but I was an extra in the Saddle Club when you were starring in it and you snobbed me off. Thanks for that. And now we're married.

Pete: You never let him live it down.

Nat: Never. It was the best wedding speech ever.

Pete: Now I mentioned in the intro that young age you were diagnosed with bipolar and Jeremy with ADHD. How was that for you two dating? Someone with Bipolar, dating someone with ADHD? How does it work?

Nat: Yeah, that's a really good question. So Jem was diagnosed with a PhD in late primary school, and then I was actually diagnosed about a year after we started dating when I was in my mid twenties. So when we first knew each other as friends studying at V C. A. Um, Jeremy was playing drums in my jazz piano trio, and he sort of told me eventually that he had a ADHD because it was sort of explaining why there was some challenges for him, like getting to rehearsals on time or remembering charts. And, you know, all sorts of things like that. And then for me, I was just kind of going through my teenage years and twenties, not really having any idea that I had Autism or Bipolar. And um, yeah, so it was more like we've been dating for a year, and then I sort of hit my first major depressive episode, and then that sort of, um, made us realise something was going on. And so it was funny because I guess, in a way, I realised now, like I'm not actually sure how much Bipolar is a role in my life and how much of it might have just been being autistic in the first place and having you know, burnouts and meltdowns and sensory overwhelming stuff. But whether or not that it is a major thing for me, I think what's really interesting is we were obviously drawn to each other, and I wonder whether it's because of our neuro diversity, like even though we couldn't really put a name on it at that point, there was something about our way of looking at the world and the jokes we made and the special interests we had. That sort of brought us together.

Pete: Yeah, interesting.

Tristram: And, in terms of those shared interests as well, you mentioned the trio then playing the trio. Did you both work together much as musicians?

Nat: A little bit, um, for a couple of years and then actually by Jeremy because he was hitting on me. I was like, That's really unprofessional. And it was also playing other gigs that were a bit more important than mine. So I fired him and booked another drummer, and then we started dating. Not long after that, I'm really giving him a bad rap on this podcast. He’s actually a really nice and respectful man.

Pete: He wasn’t giving you enough when you were at the Pony Club and then it was giving you too much attention and you fired him (laughing).

Nat: (laughing) I know it's really hard to get the balance right, isn't it? But (more laughing)

Pete: So, how did that work for you guys? Obviously, Jeremy was going. He's gigging at nights and you're it somewhere else. Like he might have to go on tour and stuff. How did that work for the relationship with both your career path?

Nat: That's yeah, it's I mean, both of us have done touring at different times. Um, but, you know, I think the most interesting phase of our lives was around about the time I got pregnant. Jeremy got a job working for a major performing arts company, like a circus company, as a musician in the band. And so from the point where I was pregnant onwards, we knew that Jeremy was going to be entering a job that would require long periods of time being away. And we never anticipated that. That's what starting out parenting would be like for us. And the first few years was really interesting, because there's been faces of time where Jeremy was around and sometimes more of a stay at home parent than other people. But then there'd be periods of time when he was away for a few months and I was single parenting and meanwhile, developing my own lullaby album, which turned out to be the best record in terms of success. Um, so you know, top two. If you send your husband away for a while, you might get more more work done, Maybe, I don't know, but yeah, it was a really interesting time. And, you know, one of the reasons why we started to wonder about the Autism spectrum was just simply because the level of pressure that we were both under in that phase becoming a parent and working in a high pressure job like that, it sort of brought out a whole bunch of repetitive behaviours and routines and anxieties and stuff that we hadn't really noticed performing. I mean, looking back now, over, we've been together. I think maybe 15 years looking back now you go. Oh, that explains that at that time, when Jeremy really got into learning how to kick a football and would kick it repetitively against a brick wall of a factory about five minutes drive from my home and, you know, or explain why I would like obsessively knit after a really long day at work or, you know, there are all these sort of things are looking back, you're like, Oh, that makes sense. But, um, really, it was becoming parents that really brought it into the light because suddenly we had this other demand in our life. Like we have to be able to get up at six. In the morning and, you know, or feed the child through the night or get him to the park and all these sorts of things create extra demands. And yeah, And then we went, Wow, this is quite hard for us. Yeah.

Tristram: In terms of becoming parents, I mean, you married in 2016. Was the plan to have a family straight away? Was that was that always the thinking?

Nat: Yeah. Yeah. I in particular, was keen to have kids fairly straight away. Um, although it took us a while to for that to happen, Jem tends to, he describes it as his ADHD means he sort of lives in the now and isn't thinking too much about future plans. So I would say with both marriage and kids it was something that was driven by me and and sort of prompting him to think about it. And I guess we always imagined that we might have to kids. But then we realised after we had one and have these growing music careers, that that’s probably about our capacity to cope. Yeah, there was a bit of grief about that, sort of because you have this idea of what you imagine your family to be like, and then you kind of have to rethink it. But I'm pretty accepting now and so happy with the way life is. So yeah, it's been good.

Pete: So being Bipolar. How was pregnancy for you? How did you manage the anxiety and the mood swings and so forth?

Nat: It was fascinating, actually, because I really imagined that the Bipolar would be sort of, I guess, flaring up during pregnancy and then after the birth. That's a really big risk time for any women with any mood disorder because there's a sleep deprivation and then, like the endurance through labour and everything, Um, but actually, for me it was like a really interestingly stable time. I don't know whether it was the hormonal rush or, um, the change of lifestyle, where you're sort of doing less high pressure work and trying to just focus on the baby and, you know, being well. But I suspect also, it's that there's a sense of routine that came from being a mum and also even just being pregnant and getting ready for the birth. And both of those things are something that I don't really um, find comes very often in the music industry because every week, every week as a musician, every week is different in terms of what concert you might have on what jobs you have to do, whether you're on tour or whether you're home. And so all of a sudden there was this predictability to the day, particularly in that newborn phase where it's that sort of feed them, change the nappy, play with them for a bit, put them down for a nap, do something else and then repeat that cycle again two hours later, and I found it just really stabilising, and everybody was pleasantly surprised, which is what makes me wonder about how much of this is Bipolar and how much is maybe just autistic stuff. Like, maybe it was sort of craving a little bit more routine and predictability, and less out of sorts, I guess only time will tell, really ask me again in five years and I’ll report back (laughing)

Tristram: So when it comes to some of those adjustments and things that you were noticing, um, after the pregnancy, um, at what point did you decide to sort of go and see whether there was another possible alternative to Bipolar?

Nat: The first step was actually, um, Jeremy. And because of the way, um, it had sort of gone through the - so I guess the best way to describe it is those first few years of Will's life I was, um, very well within myself and kind of living my best life. And, um, but through that process for Jeremy was really, really high pressure in his job and then just not really coping with home life around it. Um, and so one of the things with being on the autism spectrum is you often have special interests of some kind for Jeremy and I both of our special interests of music, which is such a wonderful thing to share with each other in our relationship. But when you're working on really intensive creative projects full time, it can be so all consuming. And Jeremy was working on music for this theatre production, and he'd work on his laptop until three in the morning and he wasn't able to stop. And then he'd have to be at work the next morning at nine AM and it was just a completely unsustainable way of working and sleeping and living. And meanwhile, it was becoming increasingly difficult to parent Will and spend time with him because he was so exhausted and so already the flags were raised for me when I was observing that play out, because in a ADHD there's a concept called Hyper Focus, Um, and so I always imagined that that's what that was. He was just hyper focused on a task and losing track of time. But then, as the sleep deprivation got worse and the demands of the job piling on and there was our beautiful kid that was sort of asking for love and attention as well. Somehow the music was still the persistent priority, and I realised that maybe that it's a little bit more of a deep seated commitment to music than simply losing track of time on a project that there's a real drive to it. And I started reading about Autism and realised that that's kind of what special interests can be like, especially if you've given permission to do that because you're getting paid to do it. So that's sort of it's sort of like a workaholic type thing. So I remember I said to Jem once after he'd come back from tour and was, it would have been - actually he was on tour. I remember I called him and said, have you ever wondered if maybe you might be on the spectrum? He said, actually, yeah, I've been wondering that, too. And it was actually so great because he was very happy to go and get assessed and was not. I guess, with a lot of mental health stuff. There's often that, you know, I guess there's some people in the world that maybe don't feel comfortable getting assessed or getting diagnosed. But for Jeremy, that was really something he was open to, and so he came back to the diagnosis. And then I was reading one of his books about autism and read about a chapter about autism in women. And I went, hold on a second. That really sounds like me and because I sort of have I'm in need of a little bit less support than Jem. I never really thought about the fact that I had a day to day disability as well. And yeah, and now, looking back I’m going it just explains so much for me, and the music is my special interest too, and I can really dedicate every hour of every day to it, if if I could. And what's beautiful about being a parent is it creates those boundaries between special interests and home life. So I have to stop composing at five PM and people up from childcare and make dinner and get ready for bed. Whereas before I was a parent, those boundaries went there and it was a little bit more like Jem’s scenario, where I could just dig deep yes, soldier on and then burn out and get depressed or exhausted and yeah, so it's really fascinating for us. the interplay between parenting and special interests and stuff.

Pete: What other adjustments did you guys have to make that you just mentioned there, sort of you’re structured at five o'clock and then pick up Will and so forth? What other adjustments? Especially for Jeremy. What did he do to help with it?

Nat: Yeah, big thing for Jeremy, I guess. And I, have been the fact that we've ended up in a pandemic and yeah, funny that, but because we're both performing artists, I guess we both composed music. And actually, for me, probably at least half of my job is composing music, which is a lovely at home solitary pursuit. But the performing aspect of both of our careers immediately ground to a halt. And it gave us a really peculiarly simple life for a while, and it gave us actually a chance to try and address some of the issues that we have both had relating to our music industry participation and a couple of the things that have really helped both of us. Once we realised their autistic to do with coping with transitions and also managing our sensory needs. And those two things are very connected. But autistic people struggle to stop doing an activity and move onto the next one, particularly if the activity you're doing is you're special interests, like composing music.

Pete: And paying the bills as well.

Nat: Exactly. And you're going, oh, well, you know, that's my job, But so that just that childcare pickup thing I described for me it's stopping me working on my special interest for 15 hours straight because I'm in charge of Will. But on the other hand, stopping the composing and doing those other domestic duties afterwards can cause me quite a lot of distress. And I get real racing thoughts where I'm still thinking about the music I'm writing or the emails I've been sending, meanwhile, trying to be really present with my son and cook dinner and getting ready for bed. And yes, so we've been working to sort of figure out activities and, um, ways to modify our sensory experience of the world around us, so that when we transition from one activity to the other, it's a little bit less abrasive. So I might be wearing a compression garment under my clothes when I have a really big day of work so that it's sort of like someone giving me a big hug through the day, and that really helps me feel quite calm. And I do the same thing if I've got a high pressure performance. So basically it's just shapewear. What I love about reaching my mid thirties is that putting on shapewear is a pretty normal thing for a woman to do. And when I when I put it on, I was like, Why do I feel so calm? This is amazing. And now I know why. But it's actually a thing in the autism world. So I might put on something like that. I might use noise cancelling headphones while I'm cooking dinner so I don't suddenly have all these other, um, noises in my periphery while I'm trying to transition out of making music. And for Jeremy, he has found all these other things that he really likes, like doing paint by number of aeroplanes because he's totally obsessed with planes. That's another one of his special interests. So things like we used to think about the idea that dinner time should be all sitting around the table, having nice conversation and being really focused on each other. But what we've actually realised is that that time of day. What works for us is if we are sitting at the table eating. But Jeremy might have some colouring out or or painting and, um, well, might be holding a little matchbox car. And I might have some, you know, like a fidget spinner or something near me. And so we all have something that kind of keeps our hands busy and minds calm and able to enjoy spending time together more easily. So it's just all these tiny little adjustments, really, that, and then also getting support workers to help us with the more monumental challenges that we have day to day. All of those things are just really changed the way we live our lives in a really beautiful way. It's great.

Tristram: So what would you say to other parents who are struggling with understanding certain behaviours?

Nat: Other parents with autism? I guess the thing about autism there's that phrase, I don't know if you've heard it, but it goes if you know a person with autism, you know a person with autism, because everyone has such a vastly different, um, kind of profile and yeah, yeah, it's really fascinating. Um everybody has different ways of communicating and different ways of stimming and relaxing themselves and different levels of support they need day to day, and so it's really hard for me to guess. But I would imagine that those things I described particularly sensory experiences, would be really hard for parents on the autism spectrum, particularly because kids can be so darn loud. So if you're having a screaming baby who won't sleep or a toddler having a tantrum, or there's like crashing cars in the hallway or cartoons blaring, all those sorts of things could be challenging for an autistic person that that's a little bit sensory avoidant to sound. Or maybe other parents, I would imagine some autistic people don't like being touched very often, you know, like getting a hug and stuff like that could be something that is a bit uncomfortable for them. And so maybe if you've got a kid that wants to climb all over you a lot, that might be a bit unpleasant. I'm just guessing, though, because I really would love to know more autistic parents and compare my experience to this. But yeah, it's, um, I think what's beautiful about the neurodivergent communities, it’s really starting to focus on the strengths and abilities of autistic people and trying to teach everybody that it's just simply a different way of perceiving and being in the world, Um, and that a lot of autistic people have incredible strengths and abilities in some areas and then need a little bit of extra support in other areas. And I would imagine, for a lot of autistic parents, it could be very similar to us where, um, there's a way that we relate to Will, that's very intimate and beautiful. And I noticed this, particularly the Jem that he's just got this incredible perception of where Wills at and what he needs at any point in the day. He’s really good at reading, reading him. And I would imagine a lot of autistic parents have these little things as well. Um, I guess one of the things that we often have to do is teach ourselves how to interpret the social communication of other people because that's not something that necessarily comes as naturally to us as to neurotypical people. But I wonder whether part of that skill means that we're able to observe our children on a really kind of detailed level about what their social communication is doing and what they might need. So that could be one of the beautiful things about it.

Pete: Exactly. And he's getting a wonderful upbringing, too. So Wills four now, you've had four years, obviously, of this having him in your life. Is there anything you'd do differently or any big lessons that you learned?

Nat: Um, there was, yeah. Look, there was one time when Will and I decided we would go to Europe to rendezvous with Jeremy when he was on tour, and we thought it would be a brilliant idea to just live together in this tiny hotel room in the middle of Munich.

Pete: And how old is Will, at this stage?

Nat: He was like, 17 months old and sleeping terribly. And Jeremy was having a lot of these challenges of, you know, being too exhausted from work and having trouble getting to bed. And then Will would be waiting at five in the morning and it was just an absolute night. So I think the thing I realised now, now that Jem and I both know we're autistic and also receiving NDIS support and able to afford support workers and stuff like that, um, is more that we're always making an assessment as we go through the week where there's some combination of activities that will be exhausting or overwhelming for either of us and then kind of building support around that so that it doesn't have the same kind of impact it might have had a few years ago. So a few years ago, I might have done a really high pressure concert and then the next day tried to just resume my usual music work and just keep on, you know, burning the candle at both ends. Whereas now I know that after a high pressure concert like that, I just need to put Will in the car and we drive out to some nature somewhere. And I do abush walk amongst the trees and it satisfies my sensory needs and, um, but also helps me to regulate after that. And then for Jem, it might be something like he's got a big maybe playing at a wedding and it's out in Country Victoria somewhere, and we used to think that it was going to be cool to go to a birthday party before that. And then you just jump in the car. You know, like a regular person would do, you know, just pop into that party and then go to work. But we've now realised that it's far better to maybe send apologies to the party, reschedule catching up with that person and then just focus on the work. So it's sort of means that we're sort of moving through our week in a more supportive way. So I kind of wish we've known that for the first 15 years we were together because there are a lot of times where I was like, Why, Why why? Why am I so anxious or why is Jem in bed? And it's, you know, one PM this doesn't make sense. Whereas, um now I realise, Yeah. Now it all makes sense basically.

Tristram: So Nat, we like to wrap up each episode with the question, what does living a bold life mean to you?

Nat: Oh, I think for both of us, we would say the privilege of being able to use our creative talents and special interests to, um, share with the world and do that at a professional level is for both of us living our best lives, and I feel like that's really actually connected to our neurodiversity. So for me, being bold is being proudly neurodivergent and then getting Aria nominations all at the same time.

Pete: Now listeners, you can find out more about Nat and Jeremy in a brand new book. It's called We've Got This Stories by Disabled Parents, and it's published by Black Inc. That's I, N. C. And it's put together by the wonderful author Eliza Hull, who people might remember she took part in Grow Bold with Disability back in Season One. Now the book is available in all good bookstores and or we'll have a link in today's episodes, show notes where you can go through and get the book. Nat thank you so much for joining us today on Grow Bold with Disability brought to you by Feros Care.

Nat: My pleasure. Thanks for having me on.

Pete: 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 30 years, Feros Care has been making it real for both older Australians and those living with disability. To find out more visit 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.