Is this a true story?

Yes. Naomi O'Byrne is a real person who shared their own story in their own words. Kintsugi Heroes is a not-for-profit that shares first-person stories of overcoming adversity, told with the person's consent.

What organisation produced this?

Kintsugi Heroes, a registered Australian not-for-profit. Every story is shared with the hero's own consent and reviewed under Kintsugi Heroes' trauma-informed content standard before it goes public.

What did Naomi O'Byrne learn from this experience?

When you're a perfectionist who won't ask for help, you don't see it as something that's for you, but people want to help and are prepared to do anything if you let them.

What would Naomi O'Byrne want listeners to know?

Naomi was holding Sarah back through fear and protection, and didn't realise it until Sarah showed her what she could actually do when given the chance.

What helped Naomi O'Byrne most along the way?

All behaviour is communication, but sometimes it's just behaviour because someone is having a crappy day, and trying to decipher which is the hardest part.

What would Naomi O'Byrne tell someone going through something similar?

There is grief in raising a disabled child, in the milestones you know they will never reach, and that grief is part of the life you're given and have to accept.

What topics does this episode cover?

This conversation includes a quiet day at home on the mornington peninsula, sarah's arrival and what it meant, the blur of early diagnosis, what normal meant, and what it didn't, the mainstream school experiment that didn't fit and holding down two full-time jobs.

Asking for help is not weakness | Naomi O'Byrne | Kintsugi Heroes

Kintsugi Studio

Asking for help is not weakness | Naomi O'Byrne | Kintsugi Heroes | Kintsugi Heroes Stories

Overview

Naomi O'Byrne is a single mother who raised her daughter Sarah while working full-time as a firefighter and emergency management professional. Sarah was born with intellectual disability, a rare genetic brain defect, severe epilepsy, physical disabilities including scoliosis, and is non-verbal. For 27 years, Naomi made every decision alone: mainstream school, specialist school, therapy, medication, respite care. She chose not to place Sarah in group homes and later bought her a unit instead. Through it all, Naomi worked two jobs and refused to ask for help, telling herself she could manage.

The breaking point came when Naomi developed lymphoma and Sarah's undiagnosed illness erupted as escalating behaviour. Both were in crisis. For the first time in her life, Naomi picked up the phone and called 000, asking strangers for help. Sarah was taken into respite care and never came home. Naomi expected disaster. Instead, Sarah thrived. She learned independence, caught buses, cooked, and built a life. The woman who thought protection was love realised she had been holding her daughter back through fear.

Two years later, Sarah lives in her own unit with 24-hour support and is happier than ever. Naomi entered empty nester grief, worked through it, and is planning to retire at 60. Both are building lives that feel like their own. What broke them open also showed them what was possible when someone finally said yes to help.

Chapters

0:00
A quiet day at home on the Mornington Peninsula
Naomi introduces herself and describes the calm she's found since Sarah moved out two years ago.
5:13
Sarah's arrival and what it meant
Naomi explains who Sarah is, her disabilities, and the decision to buy her a unit rather than place her in group homes.
7:10
The blur of early diagnosis
Naomi describes Sarah's first five months, the discovery that something was wrong, and the long process of testing and misdiagnosis.
12:41
What normal meant, and what it didn't
Naomi reflects on her early assumptions about parenthood and disability, and how she rejected the word 'normal' as her understanding grew.
16:54
The mainstream school experiment that didn't fit
Naomi tries dual enrolment in a mainstream primary school for one year, then moves Sarah to a specialist school where both of them belonged.
21:05
Holding down two full-time jobs
Naomi talks about working as a firefighter and emergency management professional while being Sarah's primary carer, and the career choices she made as a result.
28:34
The NDIS arrives and respite becomes survival
Naomi describes getting early access to the National Disability Insurance Scheme and how respite care kept her going through Sarah's teenage years.
32:38
The breaking point nobody saw coming
Naomi develops lymphoma while Sarah's undiagnosed illness manifests as escalating behaviour, pushing both of them to crisis.
34:14
Calling 000 for help
In the worst moment, Naomi picks up the phone and asks strangers for help, something her pride has never allowed before.
38:41
Sarah thrives when she leaves, and Naomi grieves
Sarah doesn't come home after respite, and Naomi enters empty nester syndrome while watching her daughter flourish independently.
43:18
Behaviour as communication, and the grief nobody talks about
Naomi reflects on what Sarah's difficult behaviours actually meant, and names the loss of milestones she will never have.
54:23
What comes next, for both of them
Naomi talks about retiring at 60 to travel and do grown-up things, while Sarah's future might include meaningful work.

1 of 7

The blur of early diagnosis

Naomi O'Byrne (Guest) · 07:10

Well, I guess we start at the beginning where I, you know, before I had Sarah, she's my only child, before her, I was just a regular person with a job and a life, and I always wanted kids. So I had her, and then, yeah, that's when sort of things changed. She was probably about 5 months old, and we sort of realized that there was something not quite right there. So we started the journey of discovery, and what her diagnosis was, what her needs were going to be. The whole thing was just a blur, not knowing what to expect or what was coming. So we— yeah, she had all sorts of tests done and everything was kind of— she was sort of misdiagnosed to a point that the condition that she had was very very rare and not widely known. So we sort of were given some diagnosis and the initial diagnosis was developmental delay because everyone knew what that was and how it could be treated. And then as a couple of years went by, she was about 4 years old, she started having seizures. And so we had to investigate that as well. She was having lots of physio, and she was having all sorts of treatments and tests to try and work out what was going on. We eventually got the diagnosis, and we were able to start treating it with medication and therapy and everything else. She went to— I tried to keep her life as regular as possible. Because I didn't know how else to do it. I just, I thought, well, she'll have to go to kinder and she'll have to go to school. And I was working full-time, so she had to go to childcare. So she went into childcare. I had 12 months maternity leave. And then when I went back to work, she went into childcare and she was in full-time childcare. And then she went to kinder for 2 years and then she went to school. But during that time, there was always therapy and medical appointments and tests and all sorts of things. So I just had to, I guess, make it work because I didn't know any different and I didn't know what I was doing. So you never know as a parent anyway what you're doing. But there was just that little added bit of complexity to our situation. So she's got a developmental delay. She's got a genetic brain defect in one of her chromosomes. So it's a genetic disorder. She's also got a severe epileptic condition which is resistant to medication. As well as she's physically— she's got severe scoliosis, which is something that we need to deal with as well. Scoliosis is obviously curvature of the spine, if people don't understand. But yeah, so she's basically intellectual disability with some physical issues as well. She's non-verbal, so we do sign language and gestures and lots of pointing and grunting. We play charades a lot, trying to work out what she needs. And she's also incontinent, so she's always been incontinent. So we've had that to deal with as well as an added added bonus. But she doesn't look disabled, so it's one of those situations that's a bit tricky. People automatically assume she's got cerebral palsy, which she doesn't have. People assume she's autistic. She has got mild autism, but it's not really— we don't treat it or do anything with it. So she had challenging behaviors right up until recently. We found a miracle cure for behaviours, but she had the most disgusting behaviours growing up, and so she was precluded from going to a lot of activities and day centres and places where people with a disability can go for day activities and that sort of stuff. She couldn't go to them because she was too violent, and people wouldn't come and support her. We burnt out a lot of support workers because of her behaviour, and it was, yeah, it was quite difficult to say the least. So, you know, we've got a few horror stories of, you know, broken windows and everything broken in the house and, you know, just disgusting behaviour, which, you know, it's just, it's so difficult in society to deal with that because people are still so judgmental about behaviors and they just automatically assume you're a bad parent.

What normal meant, and what it didn't

Daniel Dougherty (Host) · 12:41

Yeah. Can we, can we look at that a little bit? I'd love to unpack that just a little bit more. You use the term when she was born, you know, wanting her to, you know, have a normal childhood or to be normal. I want to look at what is back then. I want to— I'm looking at then versus your transformation now to maybe how you view things back then. What did you imagine the normal childhood to be like, or as a parent, what did you think normal was?

Naomi O'Byrne (Guest) · 13:10

I don't like using the word normal because there's no such thing these days. And when you say normal, it's, you know, there's no tag for what normal is because so many people have got mental illness or disability of some sort or some, you know, some condition that precludes them from being able-bodied or of able mind. So For me, I just, I didn't know what to expect. So I was just taking advice from medical people all the way through. And look, I was, we were so lucky with the support that we received back then. Like, you know, we're almost 30 years ago. There was no NDIS, there was no, you know, there was no facilities where you could put them and, you know, just walk away. You know, people kept talking about relinquishment and I thought no way in my life would I ever relinquish? That was not even on the radar, so that was never an option for me. I had really good support medically and from kinder and from school and from my family and friends. My village was just amazing, and I couldn't have got through it without them. I'm a really stubborn individual, independent woman, and I've never been good at asking for help, and that's one of the problems with people like me, um, is that you don't ask for help because when you're a perfectionist, the help is never good enough. But it's just not realistic to, to think that way. And I just— I'm trying to do better, but it's just really hard when you, when you've done it for so long on your own. You just don't see help as being, um, something that is, is for you.

Daniel Dougherty (Host) · 15:06

That's really important. That's so important.

Naomi O'Byrne (Guest) · 15:09

It is huge. It's just a real stigma for people like me that won't ask for help because people want to help and they're prepared to do anything. But it's just, I guess it's the— I don't know if it's the pride or what it is that just, you know, I can do this myself, stupid independence. So I didn't know what to expect. I wanted her to go to a normal primary school and I wanted her to, you know, to be you know, integrate into the community, but it just wasn't, it wasn't what you did back then. It wasn't really acceptable as much as it is now. And so I was determined that she was going to go to a mainstream primary school and even kinder. She did a year of kinder, which was an integrated kinder, which was just amazing. And so I kind of got to see a bit of both sides. And then she went to a regular kinder the year after and she did quite well at kinder and I thought, well, you know, there's no reason why she can't go to a normal mainstream school. So I insisted on dual enrolment when she went to school and everyone was saying, no, no, no, it's not going to work, she's not going to fit in, blah, blah, blah, and I thought, no, we're going to try it because if we don't, I'm never going to know. And so we dual enrolled and she went to the mainstream primary school for for one year in grade prep, which is for us, it's sort of, you know, 5-year-olds. And it wasn't a disaster, but they just weren't ready for it. They weren't set up for it.

The mainstream school experiment that didn't fit

Daniel Dougherty (Host) · 16:54

It sounds like they maybe weren't prepared for it.

Naomi O'Byrne (Guest) · 16:56

They weren't prepared and they weren't set up for that sort of thing. So it was more of an imposition for them than it was for me, and Sarah didn't care. She was just happy to go to school and have friends, but for them it was all too hard. So I kind of didn't feel like we belonged there, so I pulled her out of the mainstream school and she went to the specialist setting then for the rest of her schooling, which was P12, so it was prep to Year 12. So she went to the— it wasn't— it was specialist, yeah, special school, and it was amazing. It was where we belonged, and I felt at home there because to them, that was their normal. The teachers, the aides, the volunteers, the whole system was just geared for that. And we just slotted straight in and there was no issues at all. And the education that she got, because I thought, you can't teach her anything, she's not going to learn how to read or write or do anything, but she learnt all that. And it's amazing how they can teach stuff to those kids— it's not the 3 Rs, it's art, it's science, it's cooking, it's playtime, all the things that they learn. She learned how to read and write and it was just— it was insane the way that she learned.

Daniel Dougherty (Host) · 18:38

Yeah, that's incredible. And what age was she at again at this time when she went to—

Naomi O'Byrne (Guest) · 18:42

So she went to school when she was 5. Probably actually she would have been closer to 6 because she did 2 years of kinder. So she did 4-year-old kinder, then another year at 5. So she would have been 6 when she went to school. And yeah, she just, she thrived. And it was just so nice to see what could be achieved in that setting for people of all different abilities. They weren't all the same. And so they actually do individual care at those at those schools. So the curriculum is set, you know, for everyone, but they learn at their own pace, they learn in their own way. They all, you know, they all do the same thing and they learn off each other as well. You know, the kids teach each other as well as the teachers. So it was just a beautiful experience for her going to school. And of course she went through the normal stages of hating school and not wanting to go and had, you know, she's human, right? She's human, exactly. And they're all the same. Sometimes they, they don't want to go to school. She didn't want to, you know, of course it was, you know, the usual thing. So that part of her development from, you know, from school, primary school up to high school, was like every other parent. Um, you know, school was, was hit and miss. Um, but, you know, they they just made it so easy and they were so supportive and they just, you know, it didn't matter how bad I thought I was as a parent, the teachers and the support staff at the school were just like, "No, you're an amazing person. You're doing an amazing job. You know, look at what you've done for her and how well she's doing." And it was just, you know, when you hear that stuff, it just, you never quite believe that you're good enough. But, you know, when other people see it, it's obviously, you know, it means something. So it was, yeah, so school was amazing, but then you get to the year, sort of year 10 stage where they start to talk about pathways and transition out of school. And I thought, oh my God, I'm never gonna cope. I don't know what's gonna happen after school. So, but they help you through it.

Holding down two full-time jobs

Daniel Dougherty (Host) · 21:05

Can I ask you on the pathways, there's one pathway which, you know, Sarah was going to take or what pathway she was going to do. But you, as the mother, you were a full-time carer now, you know, 15 years as a, as a full-time carer. That pathway greatly affects you too, right? In your future. So, it's not just, and it is Sarah's decision. It is her choice, but also affects you greatly, right? Of what she was going to. So, yeah, tell us more. Keep telling us about that process. I'd like to hear more about that process?

Naomi O'Byrne (Guest) · 21:37

I mean, yeah, look, this is all obviously, this is all about her journey and how it affected me. But yeah, I did continue to work full-time all the way through this. I don't know how I did it. I wish I had a dollar for every time somebody said to me, how do you do it? But it's, as I said, I've never known anything else and I didn't know, you know, any difference. So I just plowed through it and did the best I could with the advice I was getting and the help I was getting. My job, obviously, my employers have always been amazing and super supportive, and I've never had any issues with work. That's one of the positives out of my story is that my employment has always been super supported. I could have climbed the corporate ladder and gone off and done amazing things, but I had to sort of make a decision as to where I was going to sit in my career. I knew that I couldn't go off and do certain things because of my caring needs. So I chose a career that suited me, that was enjoyable and that I could do while I was still caring for her. You know, I work in emergency management. I've always been a firefighter. I've always done, you know, volunteer work with the CFA. So I went away to bushfires interstate and all over Victoria. And, you know, I had people looking after her while I was away. So I was lucky that I had an employer that would still, you know, let me go away. I had family and friends that would look after her when I had to, you know, at the drop of a hat, I'd have to go somewhere and catch a plane or go drive across Victoria to a bushfire somewhere. So, you know, I did still have my career as well as, you know, managing to look after her. But yeah, I probably, you know, I could have earned more money or, you know, as I said, gone higher up the corporate ladder, but it just didn't, you know, it wasn't going to be for me. So yeah, so we get to about Year 10 and they start talking about pathways and transitioning out of school and all that stuff. And I thought, I'm not going to cope with her leaving school because it was such a security blanket and a little bubble that we were in. For so many years that it was safe and it was really scary thinking that we were going to have to leave that in a couple of years' time. But we had a session, they did a session, information night at the school and people came from the council, people came from disability places and all the disability activity centres and day centres So they showed us how to apply for pensions. They showed us what to do with Centrelink. They showed us all about what to do with the pathways after school, gave us all the information that we needed. And they also helped in that 2-year pathway transition program. They went to visit different workplaces and they did— they learned how to catch public transport and they learned how to do all these things that you just take for granted. And, you know, they learned how to go shopping. So they would go to the supermarket on the bus, on the public bus, and they would buy their groceries and they would come back and they would cook their lunch or they would make, you know, make something for eating and sharing. You know, just things that you just don't even think about that you need to learn.

Daniel Dougherty (Host) · 25:22

Those are life skills that everybody—

Naomi O'Byrne (Guest) · 25:24

Life skills, yeah, exactly.

Daniel Dougherty (Host) · 25:26

So they just—

Naomi O'Byrne (Guest) · 25:28

Yeah, so, and I just thought, how is she learning all this stuff? You know, I just didn't think she had it in her. But, um, I think I was holding her back in a lot of ways. Um, I guess my fear of her growing up, or my fear of her getting hurt, or, um, you know, somebody upsetting her. So I think I was holding her back in a lot of ways, um, and not letting her be as independent as she could have been.

Daniel Dougherty (Host) · 25:54

Um, so yeah, did you realize that at that time? Sorry to interrupt. Did you realize that at the time?

Naomi O'Byrne (Guest) · 26:00

No, I didn't. And still, even now, I still find myself doing it. Um, I think it's just the protection thing that you have as a parent or a guardian or a carer, that you, you just want the best for them and you want to protect them. But sometimes that's detrimental, so you have to sort of catch yourself doing it and think, hang on a minute, let's let her try it. And, you know, safely and see how she goes. So yeah, I'm still learning that one, but it's, yeah, it's amazing how far she's come. And so yeah, so she learned how to do all those things, you know, catch a bus, cook and clean and all those things. And then by the time they get to the end of school, they've already got their place chosen of where they're going to go when they leave school. So you visit these places like like, you know, Teddy Bears' Picnic, when kids are going from kindergarten to primary school, they go and visit the school and they hang out and they do all those things. They do that with school as well, so they take them to the activity centres and they spend time there and they meet people and they learn the routines and everything. So it was all decided by the time she finished school where she was going and how she was going to get there and all those things. I didn't even have to make all these decisions on my own this whole time. I was being guided by the experts. It sounds like my journey was hard, and it probably was, but I never did any of it on my own. I ultimately had to make the decisions, but they were informed decisions based on evidence and experience from experts. And so, you know, we made it through school and then she went to an activity centre, a day placement centre. But as I said, the behaviours were too challenging and so they couldn't keep her there. They had to let her go. So we tried another one. We thought maybe a different setting she might like. So we tried a second one, but it was the same thing. She just— her behaviours were just— too dangerous and she wasn't enjoying it, so there was no point pushing it. So at this stage, we were probably at the point where the NDIS was just coming into Victoria.

The NDIS arrives and respite becomes survival

Daniel Dougherty (Host) · 28:34

Yeah, and can you explain what the NDIS is again for some people that may not be from Australia?

Naomi O'Byrne (Guest) · 28:39

Yeah, of course. So the NDIS is Australia's insurance scheme for disability. So it's the National National Disability Insurance Scheme, and it's a federally funded insurance scheme for people with a disability or a mental illness.

Daniel Dougherty (Host) · 28:56

And that's for the individual, correct?

Naomi O'Byrne (Guest) · 28:59

For individuals, yes. So it's individual. Every individual has their own plan. It's funded through Medicare, so people pay a little bit extra on their Medicare levy, and it's funded by other insurance and things like that, but basically government-funded. So it wasn't available to us at the time, but because of her particular needs and because she couldn't go to a day placement centre, we had to have care at home. And because I wasn't prepared to give up work at that point, I thought there was a better option or there was alternatives, and I didn't want to just give up work. I was a single parent by that stage. She did have a dad, you know, for a few years, but He disappeared when she was about 13 years old. So after she turned 13, I was kind of on my own. So, and I wasn't prepared to give up work because of the financial— I had financial commitments as well as if I had stayed home and been a full-time at-home carer, I would have killed myself or her. That wouldn't have worked.

Daniel Dougherty (Host) · 30:07

I laugh, right? But it would be really intense. It would really be intense.

Naomi O'Byrne (Guest) · 30:12

Just, you know, not something I was prepared to do for both of our health or wellbeing. So we ended up— we were lucky enough to get on the NDIS really early. So it was still only in trial in the Barwon region, which is Geelong in Victoria. But we were lucky enough to get on it because of her particular needs, and we were able to get some funding to keep her at home. With a one-to-one carer at home for support. And I was able to still work, she was able to still stay at home, she didn't have to be shipped off to a facility or anything like that. So that continued, I guess, for a bit longer. And where are we up to? So now she's 18. 19 years old, we got a bit more money from the NDIS. We sort of, you know, got the funding sorted. She was able to go to Respite. She'd been going into Respite since she was probably about 9 years old, but it was kind of community supported. It wasn't— we didn't have to pay much. It was a very low fee. So we were able to— I was able to get some Respite for short breaks. So I guess that's probably what kept me going for so long. Was able to just have a break every now and then and, you know, get her out of the house and let her have a break as well from me. So the respite helped us to get through those kind of teenage years. And then once she was home full-time on her own, we got the NDIS. That sort of became our new normal. I would have her overnight, then I would go to work during the day, and then I'd come back and relieve them at night. So I had her in the morning and at night, and I went to work during the day. So it was still a two— like, I still had two full-time jobs, my work and Sarah at night. So I'd have to come and, you know, come home and cook and do all that stuff. And then that got to a point where I actually got really sick. I developed lymphoma, non-Hodgkin's lymphoma, in about 2023.

Calling 000 for help

Daniel Dougherty (Host) · 34:14

Sure. You had already mentioned earlier how hard it is for you to ask for help in general.

Naomi O'Byrne (Guest) · 34:19

Exactly, exactly.

Daniel Dougherty (Host) · 34:20

And then to reach out to somebody, a complete stranger that you don't know anything about, ask for help. It was just so scary.

Naomi O'Byrne (Guest) · 34:26

Yeah, so me picking up the phone and saying to Triple Zero, I need help, and they were amazing. They just, you know, um, you know, the police came, and one of my— the director of the support agency that we were using at the time, she called me and she said, what's, what's wrong? And I said, oh, I said, it's, it's bad. Um, I said, Sarah's out of control, I can't control myself. I said, something's, you know, one of us is going to get hurt. So she came over and she said, "I'm packing a bag and I'm taking Sarah with me for a couple of days. You need a rest. You need to have some time to yourself." So once again, the decision was kind of made for me that people were going to help me regardless of whether I'd asked for it or not or whether I wanted it. It was thrust upon me, this help. So that was back sort of in the middle of '23, and Sarah just never came home. So they said to me, "We'll keep her for as long as you need to rest, and we'll look at options because you can't keep doing this." So they said, "We'll keep her until you're ready to have her home," and you know, you can look after yourself medically. But it ended up that, yeah, she just, she never came home. So that was the decision for her to move out. And I thought this, you know, it's not gonna work. She's not gonna be able to live, you know, without me. I'm not gonna be able to live without her. But she was actually, You know, she was quite happy with that decision that we'd made, and she was quite happy to be living where she was living. She was in a group setting, in a group home, and she was just— she was like, she didn't look back. And that's when I also realized that it was me holding her back, because I thought, she's never going to leave home. You know, this is going to be our lives forever. I've just got to have to get used to it because this is my life. But when she moved out, my whole life changed and so did hers. And she thrived and she still is thriving. She's got the best life and it's been 2 years now. So that's why when she moved out, you know, I used to go and visit her and she wouldn't even care if I was there or not. She was just, you know, she was just enjoying herself so much. And then I went into empty nester syndrome and I thought, you know, where is my life? I didn't have a life without her in it. And so I struggled for a good 12 months trying to find myself, work out what my purpose was, you know, what I was going to do with my life, because suddenly the most important thing in my life was not there anymore. So that was a really big emotional upheaval for me. And also to see her thriving and happy. And, you know, I just thought, what have I done? You know, why did I leave it so long? And, you know, all those things. But now, you know, since— yeah, since I bought her the unit, um, she's got her own place and she's proud and she loves it. And she's, you know, she's got a little cat, um, so she's just living her best life. And everyone says to me, you know, I wish I had her life. It's gone from me, a new baby, not knowing what this thing was, whether she was going to live or die at any particular time because her lifestyle and her diagnosis was so grim. I didn't know how long I was going to have her for. I didn't know what my life was going to look like. I now guess we're both living our best lives. It's just insane to look back and talking about it, I think, "God Almighty, it's been a big journey." But it was just what I did. It was just life.

Sarah thrives when she leaves, and Naomi grieves

Daniel Dougherty (Host) · 38:41

Yeah, life is a journey. And it's absolutely phenomenal what you've been through, the highs and the lows. But one of the things that really struck me and continues to strike me about your journey is the idea of not ever giving her up or letting her, you know, it was just never an option. Keep her up. So you had dedicated, um, and that's a— everybody has their own situation, uh, but in your situation, the way that you demonstrated your love, um, through that commitment, um, and then stuck with that, of course it made it hard to let go. Of course it made it hard to move on. Of course you didn't want to let her, um, out of your care. But I think because of all that love you gave, all that dedication and everything, that's probably what made it— me, in my mind, that's what made it so hard. 'But at the same time, look what she's doing now.' Yeah, it's only possible because of what she had.

Naomi O'Byrne (Guest) · 39:36

Yeah, correct. And I hear that a lot. I just, I have trouble accepting, you know, that, that I'm that person, that, um, that I've done all that and, and, you know, that I've done so well. Um, yeah, I'm just, I'm not that person that, that takes the, the, um, the accolades. Um, I'm, I'd rather be behind the camera than in front of it. I'm not that, I'm not that person that, that wants the center of attention or, you know, look what I've done. So yeah, it's difficult to hear when people do say it to me. But yeah, I know I have done, you know, I've done an amazing job to get her this far, to get myself this far. And yeah, the future is just— yeah.

Daniel Dougherty (Host) · 40:21

I would like to, before the conversation ends a little bit, we still have a good amount of time, before the conversation ends, I do want to get into a little bit about the future, what the future might look like, your hopes, and really, you know, what it might look like for you and Sarah together as mother and daughter, but in more adult life living in your separate areas. But before we do that, I want to reflect a little bit on the past in that sense that you talked about community being really important. You had experts guiding you. You had, you know, your support group that came and took Sarah when you needed— when you were at your rock bottom and you needed somebody to just come in and help. What— is there any advice that you could give to others that might be in a situation of how do you allow others to help you when it may not seem like the easiest thing to do?

Naomi O'Byrne (Guest) · 41:17

I think it's pride. You've got to let your pride not get in the way of people helping. You've got to open your mind to the possibilities of what's out there with support services. I guess you've got to self-advocate a lot for your person, but also, yeah, you've got to let the pride go and the ego and let people help because it's a bit of a cliché, but asking for help is not a weakness, it's a strength. That's one of the things that I've always struggled with, but sometimes it's too late. I was lucky I got the help when I did, so don't leave it until it's too late to get the help. Just be open to it. Is all I can say, is be open to it and don't be too proud because you can really do yourself and your person a disjustice.

Daniel Dougherty (Host) · 42:25

Yeah, you've lived that. Those are words you've lived by and you've demonstrated that. So thank you for putting that into practice as well.

Naomi O'Byrne (Guest) · 42:33

Yeah.

Daniel Dougherty (Host) · 42:34

And another question too regarding Sarah's behavior. I've become a huge believer in the concept that all behavior behavior is a form of communication. Correct. Something, right? So instead of judging the behavior or, you know, really shaming somebody for the behavior, really being curious is what is this really demonstrating? What's this communicating? In Sarah's journey, from your perspective, I just want to hear from you. What was it like trying to understand what her behavior was and what she was trying to communicate? Now looking back on it over the years. Can you just talk a little bit about that? I'd be really curious to hear from your perspective.

Behaviour as communication, and the grief nobody talks about

Naomi O'Byrne (Guest) · 43:18

Yeah, look, the behavior one was always tricky, and I always look back on it and I think, I wish I knew more than what I did. The behavior, sometimes it was because of the disability, and sometimes it was just behavior because she was a toddler, she was a teenager. So trying to decipher what the behavior meant was hardest part. We learned to communicate, you know, with sign language and things like that, and that improved it a little bit. She was able to communicate her needs, but sometimes she was just being an asshole, and she was just acting out because she was, as I said, a toddler or a teenager or a young person, or she didn't want, you know, whatever I was cooking for dinner, or she wanted to go out, or She didn't want to go out. So it was really hard. And I let a lot of things go. So I was probably more easy on her than I should have been because I thought, oh, she can't do this because it's her disability. But she didn't— she wasn't doing it because she just didn't want to. And so it was hard to decipher whether the behavior was communication, whether it was just behavior. So that was the hardest part. And even now we still get frustrated because sometimes she can't articulate what she wants. But I'm a lot a lot more tolerant now, um, than what I used to be. So it's really difficult, and you can't, um, you can't compare them to other people either. Um, and that's one of the other mistakes we make, is we compare them to other people and we want them to be, oh, you know, that kid can run fast, or that kid can walk even. Um, you can't compare them to other people. Um, and so the behavior is— it was a difficult one But it's just not knowing, because a lot of it is obviously frustration because they can't communicate. You know, sometimes they might be in pain and they can't communicate that they're in pain. Yeah, sometimes it's just bad behaviour because they're having a crappy day. So trying to decipher the behaviours is the hardest part. And the other thing people don't talk about is the grief. The grief of not having a child that's considered mainstream or normal. Like, I grieve that she doesn't talk. I grieve that she'll never, you know, have a boyfriend. I grieve that she'll never get married or drive a car. All those things that we take for granted as we have children and we watch them growing up. There's a grief process that goes with that with people in my situation is that there's just things that we know they're never going to do as much as we would like it to happen. And that's just part of the life that we choose or that we're given. And it's just something that you have to accept.

Daniel Dougherty (Host) · 46:19

Yeah, I think acknowledging that is huge. You're not going to change that aspect. And at the same time, are those beautiful things? Are those wonderful things in life that would be amazing for your child to go through? Absolutely. I think so. And at the same time, does she have amazing things? Is Sarah an amazing person the way that she is? And does she bring a lot to life the way that she is? Yeah, absolutely.

Naomi O'Byrne (Guest) · 46:48

Yeah.

Daniel Dougherty (Host) · 46:48

And so I think discounting it or saying, well, it's okay. She'll never get married. She'll never drive a car. She'll never speak. She may never have a boyfriend. Said, yeah, that's okay, that's just the way it is. I think it's more complex than that.

Naomi O'Byrne (Guest) · 46:59

It is, but you can't rationalize it in your head any other way. I mean, she does amazing things, and I celebrate her little wins in other ways, you know. I celebrate her achievements because they're important, but they're just, you know, that's just how we have to be.

Daniel Dougherty (Host) · 47:21

Yeah.

Naomi O'Byrne (Guest) · 47:22

So, yeah.

Daniel Dougherty (Host) · 47:23

And I think that's a really good segue into kind of the future of, I'd love to hear about some of those wins. And I think Sarah is, I haven't talked to, I've never had a conversation with Sarah. I haven't been able to say hi to her, but from what you explained, she sounds like somebody who does have goals, right? She has interests. She's living a really good life. And that's by her choosing. Like, she's the one who, um, is living that life. Um, so I would be curious, what is a— what is success? No, no, I don't want to say what is success. What's the future look like, um, for you and Sarah?

Naomi O'Byrne (Guest) · 48:02

Um, yeah, look, I often think about that too because I just don't know if it's just going to stay the way it is or whether, you know, things got to change. Um, look, I would like for her to either try and get some sort of work, you know, volunteer work, or be able to go and do something. Because she's got a great life, but it's not meaningful as such. It's all around recreation and those sorts of activities. It's not about having a job or doing anything that's kind of— sorry, I've just called her in. What's happening here? What happens underneath?

Daniel Dougherty (Host) · 48:39

All right, she probably— I don't know if you can hear us there because the headphones.

Naomi O'Byrne (Guest) · 48:44

Oh no, she might not be able to hear.

Daniel Dougherty (Host) · 48:45

She may not be able to hear, but I unplugged them. And I don't know, I don't know sign language at all.

Naomi O'Byrne (Guest) · 48:53

No, that's all right.

Daniel Dougherty (Host) · 48:53

Can you hear me? I can still let you understand a wave.

Naomi O'Byrne (Guest) · 48:56

Can you hear me now?

Daniel Dougherty (Host) · 48:58

Yeah, I can hear, I can hear you. Hi Sarah, my name is Daniel.

Naomi O'Byrne (Guest) · 49:03

That's Dan. Say hi, Dan. I've been talking to Dan all about you.

Daniel Dougherty (Host) · 49:09

Yep, we've been having a wonderful conversation, Sarah, about you and about your journey and about what's next.

Naomi O'Byrne (Guest) · 49:18

What are you going to do next? Hmm? You're just going to say hello? Yeah, so this is Sarah. I don't know, I just want her to be happy and stay stay happy and stay safe and, and, you know, enjoy what she's doing, whatever that is. Um, you know, stay healthy. There's no— with the, with the epilepsy that she's got, it's, um, it's difficult to know what the mortality rate is. Um, it can be quite, um, it can be quite hard, it can be quite hard to, um know what happens when the brain— like seizure activity in the brain, it can be quite, um, quite damaging. So, um, you know, seizures are something that can just kill you at the drop of a hat, like a heart attack. Um, so, you know, that sort of stuff, we, you know, I, I don't dwell on it, but it's always there. So provided she stays healthy and maintains the life that she's got now, she should just keep going the way she's going. And I know that's Dan. So yeah, so I think, you know, it certainly looks, you know, the foreseeable future looks good. And yeah, we'll just continue doing what we're doing.

Daniel Dougherty (Host) · 50:48

So That's fantastic. Sarah, is there anything that you would want to do in the future?

Naomi O'Byrne (Guest) · 50:57

Do you want to do anything when you grow up? What would you like to do? Oh, she wants to play on her iPad. That's what she's saying. All it is is it's iPad. She's like a teenager at the moment with the iPad. It's just obsessed.

Daniel Dougherty (Host) · 51:10

So, oh, so many people are obsessed with the iPads.

Naomi O'Byrne (Guest) · 51:14

Yeah, correct.

Daniel Dougherty (Host) · 51:15

Yeah, that's Dan. But there's some—

Naomi O'Byrne (Guest) · 51:17

and he's got—

Daniel Dougherty (Host) · 51:17

there's some amazing things you could do with the iPads though too, as far as communication goes.

Naomi O'Byrne (Guest) · 51:22

Games. It's for communication as well. There's, there's communication apps and all sorts of things on there, you know, that you can use. But, um, yeah, she just likes playing games.

Daniel Dougherty (Host) · 51:31

So yeah, who doesn't?

Naomi O'Byrne (Guest) · 51:35

Yeah.

Daniel Dougherty (Host) · 51:35

Oh, sharing your iPad. Excellent.

Naomi O'Byrne (Guest) · 51:40

Yeah.

Daniel Dougherty (Host) · 51:41

This is absolutely fantastic, Sarah, that you came in to say hi. We've been having a wonderful conversation about you and been learning a lot about your mom and her care of you. So it's been really fantastic. Yeah, what did you do to your finger?

Naomi O'Byrne (Guest) · 51:57

I don't know, she's got a blister from somewhere.

Daniel Dougherty (Host) · 52:00

Ah, and I can't quite see what's on there.

Naomi O'Byrne (Guest) · 52:02

Is it—

Daniel Dougherty (Host) · 52:02

that's not SpongeBob, is it? I can't see the—

Naomi O'Byrne (Guest) · 52:06

no, I think it's dogs or something. It's too hard to see.

Daniel Dougherty (Host) · 52:10

Yeah, it is amazing.

Naomi O'Byrne (Guest) · 52:16

You want to hop up and go and sit on the couch? Oh, bye.

Daniel Dougherty (Host) · 52:21

Yeah, all right, we'll see you later, Sarah. All right, it's good seeing you.

Naomi O'Byrne (Guest) · 52:30

Bye. Yeah, off you go.

Daniel Dougherty (Host) · 52:32

Well, I'm glad she's— I'm glad she popped in to say hi. That was nice to see her.

Naomi O'Byrne (Guest) · 52:35

Yeah, yeah, yeah. So at least we know who we're talking about.

Daniel Dougherty (Host) · 52:39

Absolutely. And so, yeah, so the future— oh, none of us can predict the future, but yeah, she's becoming more independent. She lives in her own unit with support. Yeah, it sounds like she's interacting more. It might be recreational at the time, or at this moment it's recreational. Say, the potential for work. And I've seen— that's what the sector I work in is, disability employment. And I've seen people like Sarah who are very, very capable of contributing in very positive and valuable ways to the workforce. So yeah, that certainly could be a possibility or a reality in the future for sure. What about for you?

Naomi O'Byrne (Guest) · 53:23

Well, my current future looks like I'll probably work for another couple of years and then I'm hoping to retire. So I'm in my late 50s now and I've been working for the same— I work for the state government, so I've been in a government job my whole life. So I've got a good super package and I think I'm probably going to retire. My plan is to retire at 60, so another couple of years and then I will probably try and travel and, you know, do all those things that I couldn't do when I was raising Sarah. And although we did have a pretty good life, I must admit, we've always traveled, so We haven't gone without. We've traveled overseas, we've traveled interstate, we've gone all around Melbourne, Victoria. So, when I say I want to travel, I just want to do grown-up stuff by myself that doesn't include dragging a 27-year-old toddler around with me everywhere.

What comes next, for both of them

Daniel Dougherty (Host) · 54:23

Well, what a journey. I mean, what a fantastic journey over— we just talked about the past 27 years, obviously, you're 58, there's a lot more to you than has just been the last 27 years. But we really focused on that and what a journey that's been. Is there anything that we missed or anything you want to touch on that we didn't already talk about?

Naomi O'Byrne (Guest) · 54:46

No. A lot of people ask me, you know, have I got other kids or, you know, why I didn't go and have other kids. But I think for me, because she was my first, I didn't know what to expect. And I didn't know how much time I was going to have to spend and how our life was going to look, so I chose not to have any more. There was also the risk that I could have other disabled children. I know people do that, but it just wasn't something that I was prepared to do. So yeah, not having other children, I guess, you know, it could have been helpful, but then I didn't want them to become carers, or I didn't want to have the sibling issue where they missed out as well. So that's the only thing that we haven't discussed is other children, but I just chose not to. And yeah, it's been okay.

Daniel Dougherty (Host) · 55:41

Sure. And then certainly in the decision making process or at that time, I don't think there's ever an easy decision or an easy way to make that decision, but you make the decision that you do at the time and right, and you live with it. Correct. And you keep making the best that you can. So, yeah, that would have— your story is something that, like, is incredible. It's certainly not my story. And I don't know if I'd ever have the strength or the perseverance that you've shown. But gosh, I'm so glad you did. Such a fantastic story and such a fantastic journey. Well, let's— we'll wrap up the conversation here. But thank you so much for sharing your story. I know, Naomi, you said you don't like to be in the spotlight. You don't like asking for help, those sorts of things that you've learned to do. But it's absolutely fantastic that you're in the spotlight, almost literally of the spotlight of your ceiling fan. There on you. But the spotlight of, you know, The Conversation— I think it's just really, really important to have stories like yours shared with others who are living life, and that'd be all of us. But I— so I just want to say thank you for being on The Conversation, for opening yourself up, and for us sharing the story of you and Sarah. We really, really appreciate it.

Naomi O'Byrne (Guest) · 57:08

Thank you so much, Dan. It's been a— it's been a great, uh, chance getting to talk to you about it, and hopefully it will help somebody else that's on a similar journey or, um, you know, in the same situation as me. So yeah, thank you for, for having me. It's been, it's been great.

Daniel Dougherty (Host) · 57:25

Yeah, thank you so much. Yeah, because we're, we're all in this together.

Naomi O'Byrne (Guest) · 57:30

Definitely.

Daniel Dougherty (Host) · 57:33

Thank you for listening to this episode of Golden Thread. We hope this story of resilience resonated with you in some way. To make this podcast available to more listeners, please leave a rating or review wherever you get your podcasts and hit follow or subscribe. You can also visit kintsugiheroes.com.au to make a tax-deductible donation to help us share future stories of strength and hope. Remember, we're all in this together.

Asking for help is not weakness | Naomi O'Byrne | Kintsugi Heroes

Overview

Chapters

A quiet day at home on the Mornington Peninsula

Sarah's arrival and what it meant

The blur of early diagnosis

What normal meant, and what it didn't

The mainstream school experiment that didn't fit

Holding down two full-time jobs

The NDIS arrives and respite becomes survival

The breaking point nobody saw coming

Calling 000 for help

Sarah thrives when she leaves, and Naomi grieves

Behaviour as communication, and the grief nobody talks about

What comes next, for both of them

In Naomi O'Byrne's words

Naomi O'Byrne, today

Common questions

Is this a true story?

What organisation produced this?

What did Naomi O'Byrne learn from this experience?

What would Naomi O'Byrne want listeners to know?

What helped Naomi O'Byrne most along the way?

What would Naomi O'Byrne tell someone going through something similar?

Transcript

A quiet day at home on the Mornington Peninsula

Support

The Orangutans Gave Me Back My Happiness

Balancing a New Career & Unpaid Care while Navigating Stay-At-Home Restrictions with Leonie Mulgrew

What I do while I can walk

What topics does this episode cover?

Sarah's arrival and what it meant

The blur of early diagnosis

What normal meant, and what it didn't

The mainstream school experiment that didn't fit

Holding down two full-time jobs

The NDIS arrives and respite becomes survival

The breaking point nobody saw coming

Calling 000 for help

Sarah thrives when she leaves, and Naomi grieves

Behaviour as communication, and the grief nobody talks about

What comes next, for both of them