[00:00:02] Speaker A: Choice and Control is a podcast celebrating meaningful inclusion of people with disability in our communities, brought to you by Carers Queensland, your NDIS local area coordination partner in the community.
Each episode provides a conversation space for people with disability, their families and carers to share their stories with you. We also hear from members of the wider community, local businesses and community leaders who share information, ideas and possibilities to give you more opportunity and more choice and control in your life.
Carers Queensland is fortunate to employ wonderful staff, including our first nation's local area coordinator from the Ashmore office. Stephanie Steph is the mum and carer of ten year old daughter Dakota, who was diagnosed with level three autism at the age of eight and has since received the support of Carers Queensland and the NDIS. I had a great yarn with Steph about her journey as a mum and carer, what being a carer means to her, and some of the important self care strategies she's developed over the years.
Steph, thanks for joining me today.
[00:01:19] Speaker B: No, lovely to, you know, join you in your presence today. I'm looking forward to having a great yarn with you, Steph.
[00:01:25] Speaker A: We're talking because it is carers week coming up. Why are weeks like National Carers Week.
[00:01:33] Speaker B: Important for me, being a carer? So I have a level three autistic daughter, a beautiful daughter who's ten years old. It shows recognition for us who do wear that caring responsibility, and I think it promotes us getting out and having the yarning community about what being a carer actually is. So it's exciting. It's definitely a week filled with some really great events across the community and it's just one that I'm quite passionate being so close to home. So it's really great to share that, you know, share that with people and people broadening their horizons and understanding different abilities and disabilities that we have in our community and how we can come together and cherish them. So everyone has a unique story. So it's exciting for me.
[00:02:22] Speaker A: You said that everyone has a unique story. Can you tell us your story as a carer, Sed?
[00:02:29] Speaker B: Yeah, definitely. So I've been a carer pretty much since the day my daughter was born. We knew that when she was born she didn't cry. So we kind of picked up early on in the piece that something just wasn't quite right. And we got to the early transition of school and just realized that she could hold different conversations with adults and couldn't really engage with her peers or navigate social friendships and reading a room quite well. And we went on to the investigation process which led with a pediatrician and having a diagnosis of autism, level three, it made it challenging because when you say autism and levels, people go, what is this level? What are you talking about? Like, autism.
What does that mean? And it's so unique for every person because there's no blanket under autism. They all. Everyone's different. So it's been a huge journey for me, learning how to work the way her brain works. So it's been a very huge adjustment over probably the last five years of her life, doing that transition to school.
But since having her NDIS plan and working alongside some therapists that she's been working with, some really great OT's and speeches, we've kind of navigated that path. But for me, as a carer, it's been a hard journey.
It's been one that babies didn't come with books and autism doesn't come with a book or a procedure. So every day has been a new hurdle and a new challenge, but the supports and the wraparound services that I've had have just allowed my daughter to flourish and we attend a mainstream school here on the Gold coast and she's just flourishing. So it's just. It's been a long journey, but it's also been a very positive outcome.
[00:04:34] Speaker A: You talked there about wraparound services in the community. Can you tell us a little bit more about that?
[00:04:41] Speaker B: Definitely. So along our journey, when we got her diagnosis, we have an aboriginal medical service that was supporting us throughout our journey that consists of a doctor, a clinical nurse practitioner, her paediatrician, and it was just a safe circle of security that we felt connected to home. And they understood some of our challenges prehistorically that we've gone into, like understanding different diagnosis and some medical terminology is quite foreign and they kind of sat and yarned with us and really clarified what it actually was and what was going on and how the diagnosis came about. Then we had referrals into different pathways where I.
We had. She was originally connected with Wajan Bajajams, which is a community here where a nurse could come to home and really look at some of the behaviours and really work with us on how to best create a strategy that would help my daughter flourish.
So we've had a mix of supports in community that just continue to be bigger and better.
[00:06:01] Speaker A: When we think about your role specifically as carer, steph, what are some of the challenges of being a carer and what strategies do you use to support yourself?
[00:06:14] Speaker B: That's a tough question because every day can be very different for me one morning, first day of school can go amazing. And coming home can, you know, world can turn upside down very quickly.
Some of the strategies I found working and being a carer is taking time out for yourself. And it is okay to take that time, even if it's only five minutes of the day.
Having that time to go and think clearly, have a cuppa has meant that I can go back and reflect on some of the supports that I've learned or the strategies that the OT or speech has given me to work with my child.
And I think that was the hardest thing about having a diagnosis and working with therapists, because the first twelve months, it's really chaotic. It's all new. You're trying to implement everything, and I just learned that you couldn't implement everything. It doesn't change overnight. But taking some time out and then going back and slowly chipping away is where you get big milestones. So, I mean, me and tea, I'm always down for a tea and yarn. Anyone that ever wants to come into my office, always love that five minutes where I can down a cup of tea. But it's just really important that you don't forget yourself. That self care, when you're looking after and caring for someone, if you don't have that, it makes it very, very hard for yourself. And I think it's important as a carer to really recognize you are a carer and it is okay to take some of that time out.
[00:07:57] Speaker A: Yeah. We often, carers often prioritize the wellbeing of the person they care for over their own needs. And you mentioned it there.
How do you engage in self care? What are some of the things that you do? Steph?
[00:08:11] Speaker B: I am.
I am a good fan of the nail salon. So every fortnight, without fail, my daughter actually goes and does a speech and ot combined session. And you will find me at the nail salon. I have an addiction to keeping my nails amazing. Not that everyone can do that, because, you know, it's crazy times these days, but that is my. My addiction, my hobby. It's also that time that I get that 45 minutes to an hour to myself, too. So, you know, it's good to have a yarn with your nail tech that just doesn't know your life is not involved or a key person in your life. So it's really great to kind of go down, have a yarn. They've got really great men tossed there and just really take that time to make me feel good and I think, isn't it? Yeah. If I feel good, then I come back and I've got that clear ahead and know that we can continue.
My other weakness is chocolate. I love a good chocolate.
Always five minutes before I go to bed, after I tuck in, my daughter, put the new puppy away, I'm guilty of having a piece of Kit Kat and really just sitting back and thinking to myself, what is one good thing about today? Because when you've got autistic children, a meltdown can last hours. It can last moments, but then it's the takeaways from that when you, when you have got them settled or you've had a great, successful bedtime routine and just really appreciate something out of the day. So chocolate and I, every night we have a piece and just sit back and really reflect on how. How the day's gone and being able to put that to rest before I go to bed. So kind of quirky self care, routines, nails and chocolate. But it seems to work for me and my family.
[00:10:14] Speaker A: Well, it reminds me of that saying, you know, put your own oxygen mask on first so that you can help others. Right?
[00:10:21] Speaker B: Definitely. That is a great analogy. And look, when you're signing as many papers as you do when you have a child, in the scheme, you're always signing invoices or all of those. And, like, I can go there knowing my nails are done. It's great.
[00:10:38] Speaker A: Well, I'm really interested in that level of resilience that you've built along the way. You must have developed a certain level of resilience, have you?
[00:10:48] Speaker B: Definitely.
I've gone through many of tears before I've got to this strong place. It hasn't always been an easy journey.
I was in the foster care system as a child, so my supports were from the mature age. My grandparents raised me.
And having the old school way is. You think you're really resilient because you've been brought up old school and the new school, modern ways is just totally different. So it's been such a rollercoaster for me for the ten years my daughter's and been alive. But I've learned through being it's okay to cry and it's okay to laugh and it's okay to be you in the process. It has made me resilient. Like, it's just meant that there's nothing too big or small I can't tackle. And I'm not always going to get it right, but I've got such a great team. Like my. My daughter's ot is incredible.
If I don't get it right, there's no wrap around the knuckles, it's, hey, let's do this better or let's modify this. And it just.
You build that resilience because you've got that team around you, so there's never seclusion. It's. Yeah, it's definitely been a challenge, but in the end, and where I stand today, that resilience of, you know, having a really great employer, having Kara's Queensland, even my team leader, wrap around her supports, and she just thinks I live in a madhouse and probably do, but, you know, she just gets it. So when you've got that sort of team and environment and professionals working alongside, you build the resilience, but you also build that passion and drive to keep. Keep hearing, keep striving and really get out there and share that word with others so that they, if they need, they can be on the same journey as you.
[00:12:54] Speaker A: Was it hard looking back sometimes, asking for support, asking for help.
[00:13:02] Speaker B: More than I remember getting the diagnosis and bawling my eyes out and going, what is this? Like, the pediatrician comes in and, oh, here's your diagnosis, you know, go, go join the NDIs and I, we wish you luck. And I just remember the whole way home going, diagnosis, diagnosis. Like, what's wrong with my child? Bawling my eyes out and just not understanding.
It's, yeah, that not understanding and having really no supports initially and no community supports at the time either. So it just is a complete whirlwind. So you really do have those challenging moments where you're up and down, up and down, and you don't even know sometimes what left and right is like. It feels like you're drowning and then all of a sudden you get that small arm up. But it's. It's not been all roses, but it's definitely gotten better. And with the supports and the people around, you know, I have now a child that's doing really well at school.
You know, we've got our invite to our first birthday party, which she's so super excited for.
And it's just meant that I can let my guard down and I can be okay. So it's definitely not been an easy journey, but the last two years and working alongside people that understood my story has definitely helped.
[00:14:45] Speaker A: What would you say to someone back in those days? What would you say to someone who might be in that situation now? Can you recommend resources that would be good for health and wellbeing for other carers?
[00:14:59] Speaker B: Definitely. I mean, for First nations families reaching out to your local aboriginal medical service, they have a really great understanding and network of and a team that can really support. So I've met with some lovely counselors, some lovely psychologists.
That's where we found our speech therapist in OT and that's been.
It's been a breath of fresh air. But they've also linked me in with my community too. So I've been able link with elders and aunties in the community that when I've needed that shoulder to cry on, I've got that there. And when I need to laugh about the silliest things, I've also got that cheer squad. So having your community connections now that we do, as a partner in the community, I would encourage anyone that is maybe sitting on the fence or is finding just daily activities strenuous and struggling, reach out to your local lac or your partner in community. Because we can create a community connections plan that can link you up with services and support.
And I'm always down to have a yarn if anyone would like to connect so that I can. I'm happy to share my story but also happy to help navigate some community resources for people like your Nerang neighbourhood centre. Really great drop in location. There's so many out there and Lacs have got so many great connections that they can share. It's don't sit on the fence, it's okay to ask for help. It's okay if you don't recognise those signs, but I encourage anyone to come and have a yarn and just see, see if it's for you.
[00:16:48] Speaker A: Charis Queensland is your NDIS partner in the community and we're here to support you throughout your NDI's journey. You can keep up to date in many ways. Download the Lac app to receive news wherever you are. Sign up for our newsletters or events. Follow us on Facebook, check out the Carers Queensland website, carersqld.com dot au and keep in touch with our NDIS partner in the community. Steph, when we think about you and a carer and the carers out there, what would you say to the non carers who really want to support you? Support carers? How can other people best support you and carers?
[00:17:28] Speaker B: Education.
Education is key. A lot of people that don't have or don't wear a caring hat that want to care for people, educating where that, you know, when someone is having a low point or you do see that child that is having a meltdown in the supermarket of, you know, seeing how you can support that family or support the person.
I mean, for me, my daughter was having a meltdown quite a few months ago in a local shopping centre. And I had a lady tap me on the shoulder and she goes, look, I'm not a carer and I don't have children, but don't take this offensively, but do you know Woolworths has a quiet time between ten and eleven where there's no music or anything like that?
Really? I had no idea. I actually went home and done a bit of research and they've got an hour a couple of days a week where they cancel all noise and it's called quiet time. So when I go shopping, I can take my daughter and it's not filled with those additional noises which heighten her.
So anyone that's not wearing Kara's hat, you know, just be familiar with some of the things that are around you that could really support someone who maybe is a carer or is a participant that might need that support one day. Because I can get through shopping now once a week and my daughter loves it. She can pick out her school food for the week where before it was really quite challenging for us and it just took that one person.
So, yeah, I can only encourage and come along to carers weeks. Come along and see a local carers Queensland office, see what it's about. Because there's always someone in your life that you can share information with.
[00:19:22] Speaker A: Do you find that most people are compassionate and empathetic listeners when it comes to your life as a carer?
[00:19:31] Speaker B: Definitely. I think people now have so much of a greater understanding and everyone's happy to listen to your story. Like, I've nothing encountered anyone that hasn't been compassionate or hasn't provided those supports. I have. You know, when my daughter's having a meltdown in the shopping center, you do get those people that make it slightly awkward, but then around you, when that's happening, I've had so much more welcoming supports. Like, they're just everywhere. There's some really great people in community that just wrap around it.
It still blows me away. It is so touching to know that we have so many people out there that still want to learn, want to listen and just compassionate carers have such.
[00:20:26] Speaker A: A profound impact on our communities.
Do you feel that we're shining a light on that nowadays?
[00:20:34] Speaker B: I think through, like, things like Carers Week where people that can actually see what a carers responsibility is, it's not just being an employed carer. Like, we didn't get a choice to have that caring role. For some of us, it just is because we needed to take on additional responsibilities for the people that we love.
Hero's Week's one of those that shine and allows us to have a week where we can share with community our successes and where the story hasn't gone so great and how we're going to continue improving. But it also allows the community to see the work we do and engage with us as carers as well, which makes us better and stronger. So I think each year the space is just getting bigger and bigger and stronger and stronger. And I think carers now are slowly becoming recognized and actually being proud to say that they have this additional role as a carer and being supported.
Yeah, definitely. I think we've come a long way and I think we're going to continue growing.
[00:21:53] Speaker A: And that was my final question. Where would you like to see the caring community go? I mean, this week is called millions of reasons to care. Where would you like to see the future?
[00:22:04] Speaker B: Future is so big.
What I would like to see is, you know, everyone to maybe wear a hat as a carer just one day a year and see what that role and responsibility is like, because it's like having a backpack and filling it full of rocks, not cotton buds. So sometimes the loads we carry can be quite heavy, then engaging in those loads and for the community to understand who aren't carers, what that's like. So when they do encounter situations where you might be speaking with someone that has an impairment, that you can modify their environment or your communication to be able to support them, I think that's what I'd like to see. Just that continuation of growth and understanding community that everyone feels wanted, included and supported.
That's the key, I think, for me, is seeing how far my daughter's coming in the community here and especially working alongside some Arnie.
She feels a sense of belonging and she feels like this is her home and it's okay to be different and share that. The amazing person she is with everybody else. So I think looking forward, I just want it to continually grow because her feeling welcome and cherished and for community to understand is just, we've come such a long way and we're continually going forward. So I'm excited to see where it goes for her because the sky's the.
[00:23:42] Speaker A: Limit and really anyone can become a carer at any time, right? You don't know what's around the corner.
[00:23:49] Speaker B: Exactly. And I think that's. That's the key message for, I guess, a lot of people is when I gave birth to my daughter, I didn't. I didn't know that I was going to be having a baby with autism. So you can.
You can wake up one morning and be diagnosed with some conditions and it just impacts your family instantly. You can have ones like mine that they be born into it and you just never know when that caring role you're going to wear, that caring responsibility hat, it just comes at any time. But know that there's people always around you as a cheer squad, cheering you on and know you can do it.
I didn't think when I heard that it were diagnosis and autism. I remember that trip home, as I said before, crying my eyes out going, what hell is this? And I don't get what it means. And you're looking at the brain and going, I don't know if I'm equipped to do this, but the more I yarn with people and the more I'm out in community, the more I realize how it's my daughter's superpower.
It's become her superpower. So, yeah, definitely for people that don't, you know, they say I'm not a carer. You never know when that light switch is just going to come on and you become a carer.
But know that there's always people around you to support you in that.
[00:25:22] Speaker A: Steph, it's been so great talking to you today. Thank you so much for the yarn.
[00:25:27] Speaker B: Absolutely honoured to be a part of this yarn, to humbling to know that being a carer and sharing my story because there's been so many positives along my journey that I can share it with others is just.
I hope that this reaches out to somebody that just needs to hear that they're doing an awesome job and that there are people out there that you can connect with.
That will be your cheer squad too. Because it's meant that my daughter's able to go to school. I've purchased a home and now a puppy. So I was crazy. Do it all again. But just that feeling of connection and community has just made me the best person, the best carer and best mom I can be. So hopefully, whoever's out there needing to hear this, know that you've got my support and always up for a yarn. Contact carers because we all want to hear your journey. So I'm excited. I'm excited to see what the future holds and excited to join the rest of Carers week and hopefully hear some amazing people's stories following this podcast.
[00:26:45] Speaker A: Lac Connect. It's a new way to stay in touch with your local area coordinator at carers with everything you need right here on your device. It's a handy app to keep track of your Lac appointments, browse workshops and events, check out information and support, and get the latest news, stories and podcasts. It's available on Android and iOS, so whatever device you have, you can stay in touch. Head to our website to sign
[email protected] dot au and look for Lac Connect do you care for a young person with disability who's actively involved in sports? Being a parent and carer of an aspiring para athlete has its rewards and challenges when it comes to training and building independence. Our final interview in this special Carers Week episode is with Sunshine coast mother Lynette Haupt, whose son Tian lives with this ability and is making a huge splash in the sport of competitive Paris swimming. I first met Lynette by the pool at one of Tian's weekly training sessions to discuss how she supports his sporting ambitions.
Hi Lynette, thanks for joining me today.
[00:27:57] Speaker C: Good afternoon, Tracey. Thanks for having me.
[00:27:59] Speaker A: I've been here today interviewing Teane about his wonderful ambitions as a swimmer. What are your hopes and dreams for Teon's future?
[00:28:09] Speaker C: Certainly for Tian to be can become an independent young man.
That way he will be able to inspire kids with disabilities.
As our motto says, never accept no for an answer.
[00:28:21] Speaker A: Can you tell us about a moment that was particularly rewarding or uplifting in your journey? As Tian's mum?
[00:28:28] Speaker C: I'll never forget the day when Tian qualified for his first national event earlier this year. I'm the nervous mother. Tian has the ability to copy and me down at major events.
He will say, don't worry, mum, I'll swim fast and I'll do well.
Does he control his speed in the water?
[00:28:48] Speaker A: Lynette? Tian's been training for 18 months and it was a bit of a struggle at first to get him in the pool. Can you tell us about his journey?
[00:28:58] Speaker C: Tian being an s 14 swimmer, which means he has an intellectual disability, it was quite a challenge for his coach to get him into the water.
She is very proud of telling the story that she took 29 minutes to get Tian in the water in his first session and then eventually to get him to walk up and down in the water in the pool.
[00:29:20] Speaker A: And how did it grow from there?
[00:29:22] Speaker C: He suddenly developed in leaps and bounds. We have received exciting news two weeks ago, he has been included in the junior development squad for swimming Queensland, which basically means that he will get invited to training camps and they have noticed usability.
[00:29:40] Speaker A: When I was interviewing Tian, he has goals to go to the Paralympics, Commonwealth Games. What wonderful dreams to have.
[00:29:49] Speaker C: Yes, that is amazing to know kids with disabilities usually don't have opportunities, the same opportunities as able bodied kids. It's always a challenge to get them to training and to make it even worse, to get them to these major events and to keep them focused and calm.
[00:30:06] Speaker A: That's a major role of yours, isn't it? As his mum and his carer is to support him, keep him calm and support him as much as you can.
[00:30:14] Speaker C: That is probably the biggest challenge. We have to get him to his trainee, to get him to his events and to keep him focused.
[00:30:22] Speaker A: How do you do that?
[00:30:24] Speaker C: We work on small goals. We take baby steps with Tian, as I've mentioned before, it's about routine, so we break it down into the basics. It's usually two or three steps that he has to follow, but we stick to our goals and we stick to our routine.
[00:30:42] Speaker A: As Tian grows older, are you learning a lot more about him as he becomes a young man?
[00:30:48] Speaker C: Yes. As the saying goes, they don't come with a manual. I'm learning as well. I don't have.
I had to learn to be patient and to work on my anxiety in order to help my child.
[00:31:02] Speaker A: And do you feel like you've come to a good understanding of that now?
[00:31:08] Speaker C: I'm still learning every day with the help of our village.
[00:31:13] Speaker A: Lynette, you've also got a few other roles around the pool. Can you tell us about those roles and why you decided to do those?
[00:31:20] Speaker C: Being a mum with a kid that has a disability, I have to be extremely involved in all the aspects of swimming. I am involved with the classification process. We have 19 classes for disabled swimmers.
It ranges from s one to s 19, whereas s 19 is the classification for kids that lives with autism.
In order to get your kid classified, you will have. You will have to join a swim club.
[00:31:52] Speaker A: And why are you interested? Why what interested you in doing that?
[00:31:57] Speaker C: Since Tian started school in prep in 2013, we have been doing all the sports available on the coast. We have been doing all team sports, for instance, soccer, tennis. We have also joined the air cadets in Caloundra. I have tried different types of sport in order to find something for Tian that will stay, that will keep him interested, keep him focused.
[00:32:24] Speaker A: And you're also an official around the pool?
[00:32:27] Speaker C: I'm involved as a technical official.
[00:32:30] Speaker A: How do you advocate for your son's needs? And what advice would you give to other parents in similar situations?
[00:32:37] Speaker C: When you hit a brick wall, find the door. If there's no door, climb through the window.
[00:32:45] Speaker A: And what message would you like to convey to the public about disability and inclusion?
[00:32:50] Speaker C: Respect. Earns respect.
Treat the disabled person with the tiniest amount of respect. You will discover their hidden talent. Every success story starts with a smile. Let's return the smile.
[00:33:03] Speaker A: Thanks for talking to me today, Lynette.
[00:33:06] Speaker C: Thank you for having me.
[00:33:09] Speaker A: And that was our final interview in this episode with Lynette from the Sunshine coast, just one of the many carers we're acknowledging and celebrating this national carers week.
For more information on National Carers week or our carer program, visit our website, carersqld.com dot au and follow the links. Or you can contact the office by phoning 1300 747 636.
Thanks for listening listening to choice and control, a Carers Queensland podcast. If you've enjoyed this episode, please leave a rating and review and share it with your community. Kerris Queensland celebrating a million reasons to care.
