Episode 51 - Cherie Haysey: A Williams Syndrome Story

A twin birth, a smooth labour and then a jolt of fear. One baby thriving, the other struggling to breathe. That’s where Cherie’s story begins and it never lets go. We follow her from the long months of “wait and see,” through a 16‑month diagnosis of Williams syndrome, to the everyday reality of feeding battles, surgeries, toilet training that took years and the constant recalibration that special needs parenting demands. Along the way, a marriage fractures under the weight of appointments and court dates and a mother learns to rebuild her confidence, find her voice and create what she couldn’t find, a community for families in Western Australia navigating Williams syndrome.

We talk frankly about the system. Reports can praise “strengths” that look good on paper and still miss the risks that make independent living unsafe. Cherie lays out the stop‑start road to Supported Independent Living, respite that changed everything and NDIS rejections that hinged on language rather than lived reality. You’ll hear what planners rarely see, that using an iPad doesn’t mean you can safely cross a road, manage medication or cook a meal. We dig into what effective documentation looks like, why functional impact matters more than task completion and how to advocate without burning out.

The heart of this conversation is love and endurance. Cherie lifts the veil on the quiet burdens shouldered by siblings, the bright, affectionate nature often seen in Williams syndrome and the patience it takes to meet repetition with warmth. She also shares the searing loss of her mum, the daily rock who helped hold everything together and the way grief collides with rosters, school exits and adult services that don’t fit neatly. Through it all, she names the non‑negotiables that keep carers afloat by saying yes to help, setting boundaries and scheduling rest like a prescription.

If you’re a parent, carer, educator or advocate, this story offers solidarity, practical insight and a reminder of what good support should deliver. A safer, richer life for the person with disability and the chance for their family to be family again. Listen, share with someone who needs it, and leave a review to help more carers find this space.

Connect with Cherie on Instagram here

Learn more about Williams Syndrome

Transcript

Trigger Warning And Show Intro

Cherie 0:00

It was quite quite devastating. I was, I just couldn't believe it. And I had never heard of this syndrome disability before either. And apparently it's one in 20,000 births that it can just happen. It's genetic. It's it's just one of those things in life that you're missing. If you as the baby's forming, it can just miss out on that chromosome.

Birth Of The Twins And Early Signs

Trudie Marie 0:27

This is the Everyday Warriors Podcast, where courageous guests share the truth of what they've survived, what they've learned, and how they have rebuilt their lives. I'm your host, Trudy Marie. Listen to these stories of resilience, purpose and hope so you can remember you're not alone. Please note that the following podcast may contain discussions or topics that could be triggering or distressing for some listeners. I aim to provide informative and supportive content, but understand that certain things may evoke strong emotions or memories. If you find yourself feeling overwhelmed or in need of support while listening, I encourage you to pause the podcast and take a break. Remember that it is okay to prioritise your well-being and seek assistance from trained professionals. There is no shame in this. In fact, it is the first great step to healing. If you require immediate support, please consider reaching out to Lifeline on 13, 11, 14 for a crisis intervention service in your area. Thank you for listening and please take care of yourself as you engage with the content of this podcast. Love the Everyday Warriors podcast? It would mean the world to me if you were to leave a five-star review to ensure that the Everyday Warriors podcast is heard by more listeners around the world. You can also support the show for as little as $5 with a one-time donation or by becoming a monthly subscriber. Your contribution helps me to continue bringing you inspiring stories of everyday warriors who overcome challenges to find strength, resilience, and new possibilities in life. Head to the link to buy me a coffee and fuel the next episode. Every bit counts. Welcome to another episode of the Everyday Warriors Podcast. And today I have a good friend with me who is going to share her story. And I know a lot about this story, obviously, through our friendship, we've been able to get to know each other and our journeys inside of that. But there's also a lot that I don't know. So I'm curious to have this conversation. So please welcome to the podcast, Cherie. Hi, Shri.

Cherie 3:05

Thanks for having me.

Trudie Marie 3:06

You're most welcome. And I know we've talked about being on the podcast for a while, and you're a little bit apprehensive about it. So I'm so glad you've jumped in the deep end to share your story because I think it's an amazing one.

Cherie 3:19

Thank you. Yes, um I'm keen to share it. I am. I think I just want to share my experience, and that way I can help others through their experience.

Trudie Marie 3:30

A hundred percent. So I want to start your story by taking you back to 2004. Who can believe it's like 21 years ago, to when you had your babies?

Cherie 3:44

Okay, so Ben is a twin and who we're mainly talking about with the disability, and his brother is Sam. So I had the boys at 37 weeks and four days, just went naturally, which was fantastic. I had them naturally, except for an epidural, because they made me have that. Because with twins, if there's any complications, then ideally they need to whip you in to have a Caesar. So I was lucky enough to just pop them out five minutes apart and walked back to my room. So it was just like nothing had happened. And I felt felt really good except for just the muscle pains and contractions coming back together. And Sam came out first and he was bright-eyed, bushy-tailed, and perfectly fine. Whereas Ben, they had to work on him until 5:30 in the morning. And that's when it was like, oh gosh, what's going on? And he just was struggling to breathe, and they were just, I don't know what they were doing exactly, but they were working on him, and that's all I knew. And then they took him to PMH, so Princess Margaret Hospital in WA, which is now PCH. But they kept him there for a good two days, and then I was able to get him, and they thought he had a hole in the heart. As it turned out, he had high blood pressure in the lungs, and then they were able to get him breathing naturally on his own, and then I was able to bring him back to the hospital. So I was still at Swan District's Hospital in Midland, and it was Mother's Day, and I'd had twin boys, but I only had one with me. So it was really surreal because I'd had two babies, but yet only had one in the room, and yeah, it was and it was Mother's Day, and it just wasn't quite the same, and it was a bit traumatic and emotional, but I was happy to get Ben back with me and start the feeding process, which was another hurdle, which I didn't expect.

Trudie Marie 6:07

So the boys weren't your first either, were they? Because you've got Sophie, your daughter, who is a couple of years older.

Feeding Struggles And Missed Clues

Cherie 6:14

Yes, correct. So Sophie's three is older. And yeah, at the time she was three when they were born. And yeah, I had uh a natural birth again with her. She had some breathing issues to start with as well, but she came out fine. Yeah, when I got Ben back, I he just wouldn't, he could not breastfeed. I had to bottle feed him. That took at least half an hour at a time to get 10 mils of milk into him because he just didn't have that suck swallow uh reflex down pat that naturally a baby would have. Sam, not a problem in the world. He was feeding like a champion. And Ben, I just felt like I was can, you know, completely stuck to that couch for nearly most of the day because it would take that long to feed him. And we didn't know why. And I we just kind of thought because he was really little and he had some issues in the beginning, but never really suspected anything at that point.

Trudie Marie 7:20

When you were having your midwife checks or your clinical nurse checks as they do when you have a baby, were they identifying any issues?

Cherie 7:33

No, not at that point. Nobody picked up on anything. Even the hospital didn't, because when he was a month old, my mum noticed he had a hernia in the groin. So this lump would every time he'd cry would protrude out. So I think it was only a month and he had to go in and have his hernia done. Then he then it came back and he had to have it redone. So yeah, he had a lot of operations in the beginning, but nothing was suspected that it was William syndrome, and that is actually one of the things that is common in William syndrome for babies. At that point in time, they're susceptible to hernias.

Trudie Marie 8:18

So when was he actually diagnosed with William syndrome?

Hernias, Surgeries, And First Alarms

Speaker 8:22

He was diagnosed when he was 16 months, and the only reason was because we were not really happy with the way he was developing because Sam could sit, whereas Ben couldn't. He would stiffen his legs up

The 16‑Month Diagnosis Explained

Cherie 8:38

and he just could not sit up. He had he was laying down all the time. He wasn't rolling, he was just laying there doing nothing and not even attempting to roll. Like he was 16 months old, and you're thinking, Oh my goodness, you're you're comparing him to his brother the whole time. And having had Sophie three years earlier, I was like, No, this is not normal. So we went to the clinic nurse, she suggested seeing a physio. So we saw the physio, and that's after the first visit, he suggested taking him back to the pediatrician just to get him assessed. And that's when I was like, Oh, do you think there's something wrong with him? And he said, Oh, I don't really know, but I think there's something going on. Like he didn't want to say, but he just was guiding me in that direction to see the pediatrician and get him assessed. Now, when we went to our beautiful pediatrician, Dr. Christie in Midland, who's amazing, and he was there when Ben was born and helped with everything, he picked it straight off the bat because he could see the facial appearance. So, like William syndrome is similar to Down syndrome people. So, Down syndrome people have a similar facial features, like they look similar, and Williams syndrome kids or people are the same. The only difference is with William syndrome, they're missing a chromosome, which is number seven, which affects their overall development and learning abilities. So, Dr. Christie said, Look, what we're gonna do, what I can see from just looking at Ben and assessing him now is he possibly may have what's called William syndrome. Now, what we'll do, we'll do this fish test, we'll know in four weeks exactly if it is Williams syndrome or another syndrome of some sort. But just looking at him, I'm guessing 100% it's William syndrome, and he was right. And when he was younger came like all those different little hurdles, like the hernia, he had a a stomach, one one in his belly that had to be done, he had grommets, he had bowel issues. So, and eating when he came onto solids, it was not the texture of the food, he just wasn't coping with. I mean, now he eats anything and everything, he's not fussy. He, I'm very, very grateful and lucky and blessed that he doesn't have any eating issues at all, which is great. He'll eat whatever I give him. But in the beginning, it wasn't all smooth sailing, he was constipated a lot of the time, and yeah, it was just horrible for him. So we started OT speech and all the things that come along with being diagnosed with a disability.

Trudie Marie 11:37

How was that for you in the sense that you've already had Sophie, who is a perfectly healthy little girl? You're pregnant with twins, and obviously during a pregnancy with a multiple birth, you're checked and monitored more frequently to make sure that both babies are okay. And nothing was picked up. You have a relatively easy birth, like there were no complications during birth except for Ben having some breathing issues afterwards. And it's not until he's 16 months old that he's now diagnosed with this syndrome. That I'm guessing, because I didn't know what it was until I met you, that it's not really common. How was that for you?

Processing Grief And Finding Support

Cherie 12:24

It was it was quite quite devastating. I was, I just couldn't believe it, and I had never heard of this syndrome disability before either. And apparently it's one in 20,000 births that it can just happen. It's genetic, it's it's just one of those things in life that you're missing if you as the baby's forming, it can just miss out on that chromosome, and that's it. There's no way of testing for it like there is with Down syndrome, and it isn't very common at all. So I felt really alone, and and I was put in touch with one lady who used to operate the Williams syndrome support group many, many, many moons ago. And she just said to me, because I just wanted to know, will Ben be okay? Will he eventually grow up and be able to do all the things that his brother and sister will be able to do, and then he'll be fine? Is it just, you know, he'll take a little bit longer to do all the major minds, milestones, and then once he's at school, he'll just be normal. And she said, All I can say is don't look too far ahead and just take one day at a time. So that was really hard to take, and it was a struggle because Ben was not toilet trained fully until he was 10. And that was like at night time. So daytime, probably around nine, he was out of nappies and 10 where he didn't have to wear anything to bed. So it was a journey. I thought I was gonna be stuck with nappies for the rest of my life.

Trudie Marie 14:03

So yeah, that must have been tough, like especially having somebody who's part of a support group a long time ago telling you to just take it one day at a time. That's as a mother, like I'm very fortunate to have two healthy children that have had no real major medical issues. To be told that, that must have been extremely tough.

Separation, Courts, And Co‑Parenting Strain

Cherie 14:26

It was. It was really, really hard going, but I just tried to remain positive and do all the things that were suggested, taking him to his appointments to start the early intervention with speech and physio and OT. So that took a lot of time, and I was only working three days a week. And I had fortunately back then and through the whole of my journey, I had my mum who was my rock and who was always there to take care of my kids before and after school and to take them to school and pick them up for me, even when I was married. And that was in 2005, that would have been. So I was the only I was having to take more and more time off work because my ex-husband felt his job was way more important and he could not take time off. And so I would go to all these appointments with my mum as my support person, and then eventually come 2006, I had had enough after three times of trying to leave the marriage. I gave it all I I could and realized there was nothing left and nothing was going to change. So I left the family home with the three kids and went and left, lived with my parents for seven months before then getting a place of my own. And then it was just dealing with being on my own with three kids, one with special needs, who was still having all these appointments to go to, and also going through the separation and mediation through the court system and all of that, which is another long drawn-out story.

Trudie Marie 16:34

I can only imagine what it would have been like because you're not only dealing with a child with special needs, but to have a partner, the father of the child, not be supportive in the way you kind of expect them to support that this is their child too, and you're having to deal with all the emotional burden on your own. Obviously, there was a relationship breakdown, but at any stage during Ben's lifetime, has your ex-husband ever stepped up to assist with his journey?

Cherie 17:12

Only when we when we separated, that's when he started to to be there more, which was sad because you know, it took me leaving for him to step up and be there more for the kids. And it was probably, and I'm not blaming him in any way, because you know, the way we were both brought up, it was like the mum did everything and the dad went to work, and it was very old school, old-fashioned like that. And I kind of put that pressure on myself as well, expected to, I felt I had to do it all, and then I couldn't. And then when I asked for his help, he was like, Oh, why do you need my help all of a sudden? And it's like, well, because I'm not coping, and it just went downhill from there. And in a good sense, me leaving made him have that quality time with the kids and be more present at appointments with Ben, even though he would bring his new partner at the time with to all the appointments, and then it was like two against one. But you know, I got through it because I would have my mum there beside me as well, and I just had to shut them out and focus on Ben and talking to the doctors and not focus on what else was happening in the background, so it was hard, it was really, really hard because I I was all alone. I had I didn't have a new partner and were both separated and then divorced and going our separate ways, and he was remarrying and having another child with his new wife and and all the things. So it was it was really trying times, yeah.

Trudie Marie 18:58

It sounds horrible to ask, but it at any stage during that time, did you just have this feeling of why me and why am I being burdened with this in the sense that you had custody of Ben, but he was free to go and live his own life and start again and kind of walk away from it all? Like, did you feel like at any stage you were like trapped in this situation?

Rebuilding Confidence And Landmark Breakthrough

Creating The WA Williams Syndrome Network

Cherie 19:25

Not entirely, because he he fought for shared care, and I just wanted peace and harmony at the end of the day, and I wanted to be able to be friends with him for the sake of the children, however, it was never going to be that way. So we did have shared week about custody, so I did have a week where I could just have my own respite and live my life. So I kind of felt like for a very, very long time I was living a double life. I would have one week with the kids and then one week on my own. And even when I didn't have the kids, I would still have to attend appointments with them because obviously I'd want to be present there to see what was happening and to get the information firsthand because there was a bit of a communication breakdown between us and where one parent didn't want to talk to the other, and it was anyone listening out there who has gone through a divorce, it's not always amicable in the way you would want it to be and would have hoped it to be, because the other side refuses. So we had a communication book essentially every time the kids would be exchanged, which was on a school day. So we never got to see each other and we never got to speak to each other. And even if I tried to, that barrier was always knocked down. So it just made it extra challenging, especially when it came to all the things with Ben, because especially when choosing the right school for him and dealing with the teachers in the school, and and they were then becoming involved because they would get they would see both parents and see both sides, and then both of us would go to the meetings and then one would drop out, so then it was all left to me. And the same with you know, attending review meetings so Ben could get funding through NDIS. Eventually it was just left up to me, and in a sense, it didn't bother me because I preferred it that way because I always felt so anxious having to come face to face with my ex-husband, having felt so intimidated for so long. And there was that PTSD, I guess you could call it, that was always there, and it really just it knocked my confidence to the core, and it just took so long to rebuild. Hence, having amazing friends around. Me who supported me, and one in particular who invited me to do the landmark forum, which made the biggest difference to my life. So I went through that process and I did this transformational landmark forum, and then I did the advanced course after that, and then I went straight on to doing the self-expression leadership program, which you get to actually choose something you're passionate about and create something amazing that you can give back to the your community. And I decided to create a Williams Syndrome Support Group in WA because the one that that used to be there was no longer. And so I had to create an event and start enrolling others in what I was doing. So I got in touch with Cal Paren at PMH, I got in touch with my pediatrician, anyone I could get hold of, my local area coordinator at the time before NDIS became a thing, and put the word out that I'm having a picnic at King's Park, and I got 11 families turn up because they all heard about it and they had little ones. They had a child of their own with William syndrome, and there was all different ages, there were some that were older, and it was just amazing to connect and find out okay, so what happens when they get to this age and what happens when they're older? And what did you do? And what did you know? Did you go mainstream schooling or did you go to a special needs school? And the thing is, every child's different. So you've got to go with your gut and do what's right for you.

Trudie Marie 23:47

After inside of everything that was going on, when you felt at your lowest point, like you said, that your ex-husband had literally knocked the confidence out of you, a good friend introduced you to this personal development program, and then through that program you were able to create your own support group with people going through exactly the same thing that you were going through. I think that's incredible courage and bravery to just face it head on to go, I don't have the support I need, so I'm going to find it myself. And not only inside of that did you create that for yourself, but you've given all these other families the opportunity to do exactly the same thing. How did that make you feel?

Ben’s Personality, Strengths, And Challenges

Cherie 24:34

Pretty special. I was like blown away to the result and how many families came and how we all stayed connected, and we just would have gatherings for like Easter and Christmas, and there was a beautiful couple that came on board by the name of Anthony and Misty, and I love them to bits. And if it wasn't for them, I'm not sure if it would have taken off. But that's the whole point of creating these projects through the self-expression program because you start it off and then someone else keeps it going, and that frees you up for other things, and that's how these projects essentially go. And they just had the know-how and knowledge and expertise. They would go over East to different conferences where there was other Williams syndrome support groups and get information. They they just knew how to put together this support group in the correct manner. And ever since then, since 2009, it's still running to this day. And we were almost worried it was going to fall completely because all of our kids have grown up and are so much older that we needed the younger families to kind of step in and start taking it over. And now we do have another husband and wife who've taken the reins, and we can just be there as support in the background and enjoy everyone and coming along because we're all at our at a point where we're all in carers burnout because our kids are adults now and working, but at different levels once again, because that's the thing with William syndrome, they're not all at the same level. With my son, I feel there's some other intellectual disability going on because his conversations and speech isn't the same as my friend's son, who is a few years younger than then. And you can have a really good conversation with him. And with William syndrome, they are very friendly, over-friendly people, love to give you hugs and cuddles, and they love to be around adults and they love to talk a lot, and they will often repeat the same thing all the time. And that's what I've been getting for the last few months from Ben. He wants to see the Chinese dragons because he knows that's what's coming next. He's very good at remembering what's coming next in the year. So now it's coming up to Chinese New Year. That's all I'm hearing, and that he loves fireworks, so it's like, yes, okay, Ben, okay. You just you just kind of get used to hearing it, it becomes like background noise after a while. But that's how you just remain sane and not let it, you know, grate at your nerves. But you just got to have a lot of patience with these kids and realize they're not moving, they don't move at a very high speed, they just take things at their own time and do things when they're ready and they're in their own little bubble. Then he's living the dream. And nothing phases him. He doesn't get upset, he's always happy. He does get upset sometimes, but that's if he's had a complete meltdown because something of his is missing, which doesn't happen very often.

Siblings’ Quiet Burdens And Fallout

Trudie Marie 28:02

Like thinking about you creating that support group and helping Ben through this process with that, and obviously you gain the support yourself. But I think about the siblings, like obviously, Sophie has had to watch she's got two little brothers, and one of them can be the little brother that you know most kids, I suppose, expect them to be, but she's had to watch one go through all these medical hardships. But even for Sam, in the fact that this is my twin brother, and yet we could be literally polar opposites because of the situation. How have the kids fared through all of this?

Cherie 28:44

They kind of really don't say a great deal. They're very quiet, and I think because of having lived in two different households, whereas in my home, they were free to be self-expressed and be themselves, whereas when they went to their dad's, it was very militant in their upbringing, particularly to do with the uh the stepmother and the way they were treated. So they were very uh they were intimidated by that that treatment and very quiet and withdrawn. So I felt like Sophie had to step in as the mother when she was not with me and look after her brothers and internalize everything. So she doesn't really show emotion a lot, like you never know what she's thinking. She doesn't ever cry, like she's so not so opposite to me. And Sam, he is more of my emotional child, however, he sort of buries it deep and gets angry at times. So he channels that anger through his gaming, he games a lot, and so you hear him swearing, and I don't know. I think it's Samuel, you know, why are you doing this? And he feels very overprotected of Ben. And I always felt I felt sad for Sam because I felt like he was like the middle child, you know, in a sense, even though he wasn't, he was well, he kind of was by five minutes. But being a twin, they weren't the same, they were complete opposite, they don't look the same, they're fraternal twins anyway. They didn't go to the same school, so they were separated from four years of age, essentially. He went to a different kind, and so did Ben, because Ben wasn't toilet trained, so he had to go to a special needs school. I could not rely on the mainstream school to have someone there like the whole day to be able to change his nappy and take care of him. But I do notice that when Sam's out with us and Ben's around, he's he just takes over. He takes control and he's really on to telling Ben to keep off the road and he's really, he really panics if something happens to Ben. I feel like they both have felt this sense of responsibility, especially when I haven't been present, to be there more so for Ben, because also their home life with their dad wasn't the greatest either. And it was towards the end that I didn't know until they came back to live with me that they were subjected to also physical and psychological abuse due to their stepmother, which was horrific and really awful to find out. And now their dad does not have contact with them at all. I don't know why he never ever said, but I can just imagine he would have said to the kids something along the lines if you go back to your mum, that's it, you'll never see me again or hear from me again. And he was the sort of person that would say stuff like that. And he hasn't, he's he's not even contacted his own family. So that I feel sad for the kids that they don't have that relationship with their dad, but they're doing remarkably well. And I've just tried to keep things positive in my house and encourage them to do things for themselves, and they've achieved everything that they have by themselves.

Caregiver Burnout And Seeking Balance

Trudie Marie 32:11

That must be extremely difficult in that you're not only dealing with a child with special needs and you're dealing with it as a solo parent, but then you've also had to deal with all these other idiosyncrasies to do with your other two children and the relationship they have with their dad, that they're then taking on responsibilities that they probably never expected to, or that you wish they didn't have to. And so you're trying to deal with all of that, but you're doing it on your own. And obviously, your your mum and dad were your rocks during that period.

The NDIS Maze And SIL Roadblocks

Cherie 32:52

Absolutely, because I mean, over the years since being separated, I had did have a few relationships, but they didn't work out. And that and at the time those particular partners were were supportive to a point, but I didn't, we I didn't live with them. One of them I did, and he was fine, he was good, but now that I have a new partner, he's actually been amazing, and we don't live together, but he's he's done his best, and he's always been supportive and accepting of Ben especially, and always will encourage us to do things, and but it was mainly, yeah, just my mum and dad, because I had lost my brother when I was 27, so that's nearly it's coming up 24 years ago, so I didn't even have another sibling to help me out, and yeah, it was it was quite difficult, and I wasn't that close to my in-laws, and at first they didn't want to talk to me or know me because they were only hearing one side of the story, but then they've let their guard down, and I've always reached out to them and said you can always see the kids whenever you want, because I did I just didn't want them not to have a relationship with their grandchildren, even though they couldn't see them when the kids went to see their dad. So yeah, it was challenging. Every year was quite challenging, and in in between all that, we were in and out of the family court, still ongoing stuff with Ben and working full-time, and it was just you just kind of keep going and going and going, and now it's it's at a crossroad. I've come to a crossroad where I just as easy as Ben is to look after, and such a beautiful person, and I just I just want to be his mum and enjoy him now. I don't want to have to be constantly caring for him because now my other two kids are adults and they're able to do everything for themselves and drive their cars and they've got their own, you know, careers and they've achieved lots of things, and then and then there's Ben who still needs that support and assistance because it's not safe for him to be on his own.

Trudie Marie 35:23

I think this is one thing that many people don't understand when you do have a child with severe special needs, and I have a niece in that situation. She's still in school, in high school. I know a glimpse of what my sister and brother-in-law go through. But once they leave school and they're unable to enter adulthood, as we would expect most kids to enter adulthood, whether that's get a job or go on and further study. But when you've got a child with severe special needs, it requires that care 24-7. You are now having to live your life completely differently because you don't have that breakthrough school where you know a teacher or somebody else is looking after them. That care then relies solely on you. And I know for you this is the difficult situation where you're at. Is that what happens with Ben? How do you care for Ben, but still have a life of your own? And then having to deal with the whole NDIS system where it's almost like I hate to say it, but it's almost like you just become a number in the system.

Funding Rejections And Daily Realities

Cherie 36:35

Yes, absolutely. Now it got to a point where I could even see it was the start of 2023, and I could start to see a change in my parents because they they're in their 70s and they should be enjoying their retired life and doing their own thing and having their own interests. My mum loved taking care of my kids and being that second surrogate mother, and I allowed her to step in and help me because I had no one else. And if I didn't have my mum, it would have made it very difficult for me to work and earn an income, pay the rental mortgage and all the things. And even to go out and have a relationship with not only my friends, but with a new partner, because I ended up with Ben full-time at the start of 2021. And so every weekend, every week, I constantly had Ben. So if I wanted to go out with my girlfriends or just have some alone time or to have some time with my now partner of eight and a half years, we would have I would have to ask somebody like my mum and dad, or once again Sam, to just be there with Ben, like to look after him and be in the house with him and make sure he goes to bed on time and all the things so I could have my life, uh a part of my life back. And it was very difficult at times because they were getting worn out and sometimes they didn't want to do it all the time, and I didn't ask all the time, but it just kind of felt, I think, a bit of a a drain on my mum, especially because she would come over every single day, first thing in the morning, and then back again in the afternoon until I got home from work, and that was five days a week. Then, if I needed her to have then overnight on a Saturday, then my mum's caring for him again. So between the two of us, we were both we'll both be coming burnt out, and I could see the retaliation, and it was affecting our relationship. And then my dad would have to step in and because he would obviously hear what my mum was saying, and then he would step in and no, you've got to just back off. And so I decided I needed to get things moving with looking into a group support home, which they call them SIL Home, so supported independent living homes. And so I got in touch with my coordinator at Rocky Bay, and we started the ball rolling and submitted in it. Was that towards the end of 2023, submitted for the funding, and she was just about to go on maternity leave. So she thought to she said to me, Look, I think this will be pretty straightforward. It's been pretty straightforward for most of my clients, so I can't see there being a problem. So we got we found a house for Ben. He started going there in the September, October, roughly of 2023 and was going for respite every weekend. And he got to know all the residents, he made really close friendships, got to know the support workers, they all became attached. And he did that for nine months, and he was doing that for nine months because he firstly got rejected. So NDIS said, no, he's fine, he can live independently. Then we asked for them to review it because no, we don't agree with that. And by the time they reviewed it, it was like another few months later because they're not quick in their processes. So by the time we got an answer, Ben's respite had run out and he could no longer go to that house. So it was July 2024, that he couldn't go there any longer. So I had been at home every weekend again because that kind of took the pressure off for a while. It was, it just made such a difference because during the week it's business as usual. I didn't do a lot during the week anyway, so it wasn't a problem. But on the weekends is when you he wanted to do things with his friends, which he made at the house. He had friends and he called them there his family, his second family, which was really sweet. And yeah, and then I got to do my own thing. Sam got to do his own thing, everyone had their own free time, and there was no problems. So then eventually NGIS came back and said no. So we then had to re-apply. So we reapplied, same thing happened. They rejected, we got a review, they came back, they said no. So then last year we waited a little bit of time between the rejection again because it all sits in the portal. And what I think was happening is they just kept referring to the very first application. And with OTs and speech therapists, they have to, they can't lie, and not that and they didn't lie, they were saying exactly how well Ben was doing, but it was emphasizing too many positives. So the NDIS jump on certain wordings and go, oh, well, he doesn't need that, he's fine, he can use an iPad, he's he can live independently. Well, I know a three-year-old that can use an iPad, but would you leave them at home on their own? No. Ben can't even cross the road still, he can't use a phone, he can't cook a proper meal for himself. At the best, he can put cereal in a bowl and a bit of milk. That's it, that's his limit. He needs assistance for cutting things and using heat like the stove, and he doesn't have the cognitive ability to go, oh, I think I need to wash my clothes, I'll put the washing on. No, that just would sit there. He wouldn't, he does not think of any of those sorts of things. He's just gets up, gets dressed, goes on his iPad. That's his limitations. So, anyway, so we're now on the point where we've we reapplied in September. We last heard just before Christmas that it has progressed to the NDIS planner. The SEAL component of the funding that we're after has gone to the home and living team, and that's where we're at. And every week my coordinator rings to find out how's it going, how's it progressing, where are we at, are we any closer to getting an answer? We just want a yes or a no, and still nothing. They're still working on it. I can see they have got it and they're working through it, but that's as far as we've got. They haven't said, okay, we've come, we've come to a decision. So we're just hanging on every week, waiting for this decision. Because once we know, we can then proceed to the next step.

Trudie Marie 43:45

That must be the hardest thing for any family going through this process, regardless of what condition your child has. But to be told by a government agency, by people looking at a piece of paper. Paper and reading between the lines, as you said, they focus on the positives rather than the hardships. That you're being told after nearly two years of going through this process that your son doesn't qualify for funding, but no one is in your home watching how you live day to day and understanding what it is you have to go through. And not only are you going through this process, but you're practically doing it on your own, and even more so now because you had some heartache at the end of last year where you no longer have your rock.

Losing Her Rock: Mum’s Illness And Passing

Cherie 44:38

Yeah, that's right. So last year, going just backtracking for the start of the year because it was getting a lot on my mum, and I wanted to relieve her from having to come over every single day to take care of Ben, even though she was like, No, I'm the only person that knows how to look after Ben. And she was a bit of a martyr like that because she she had always done it, and she just felt that she knew best and that she could look after Ben the best that anyone else could. She didn't want strangers coming into my house looking after him. But I said to mum, it's got to a point where I'm gonna have to get some support workers to come in the morning and afternoon, maybe three days a week, just to give you a break. So you can still do Monday and Friday, so you still have a job because mum felt like she was being without a job because she said, Oh, so I've got no, I've I'm without my job now. And I said, Well, it's not your job, but you know, she enjoyed doing it, and it was good in a way, because I did get to see a lot of my mum. I saw her every day and I spoke to her every day, and sometimes it was a bit much, but it was it was kind of good anyway. I mean, we're very close, and I always did growing up, I did so much with my mum anyway. So I put that into place and thank God I did, because a week later, I think it was about a couple of weeks later, my mum got really, really sick, and then in the late March or mid-March, she got diagnosed with stage four melanoma all throughout her body. So she then proceeded to have treatment, three rounds of immunotherapy treatment for that. They then came back and said, it's not working, your body's not responding, there's not anything else we can do. We can perhaps try the tablet form of immunotherapy, but if you want, but otherwise you've got weeks, maybe months left to live. And all of this was just huge. I was getting used to having these strangers coming and going in my house, and most of the time it was consistent and sometimes it wasn't. And I know that these companies do the best they can, they can only get people when they're available and all the things, but it was consistent to a point, and then I got used to the same ones coming and I got to know them, which was great. But they were on my doorstep at quarter past seven, which is what I needed, so I could leave work on time to get to work on time, and then they would be there at the end of the day. So I always had someone here, so I kind of felt at first I felt like I had to race around and get everything organized, and I felt more pressured, but then it began to relax and relinquish jobs to them because that's what they're there for to help me as well. And Ben didn't care, he quite liked it. He was nothing phased him. Ben's very resilient, he he likes people, so it did not bother him in the slightest, and it was just tough because it got to it was five days a week, and that meant I didn't have any funding for respite for Ben, so he couldn't go on any camps or any of those sorts of things. So I was back to having him full-time and then also having to help my parents in the background with various things because as my mum got sicker, then my dad wasn't well. I had both of them in hospital at one point. My mum's brother went into an aged care facility, so I was assisting my mum and dad with the paperwork around that because that was all confusing for them, dealing with aged care. Oh, it was just one thing after the other. And then eventually it just got really where my mum passed away on the 13th of September, and then having to sort of go through the grief of all of that and living without my mum, and having to be there for not only still my kids, but for my dad now because he's on his own, and I feel sad for him because he's not got his partner anymore, he's got his wife, he's all alone, and he's not able to do a lot for himself with being on oxygen all the time. But I'm trying to, you know, get him to do as much for himself as possible, and that's been draining. And my auntie, who's not able to come fly anymore, she's over. That's my mum's sister, she's been amazing as well. She's been my second rock, so I've always had her to talk to, but she lives in Bendigo, and it's just been it's just been a constant uphill shoveling shit uphill, really, kind of scenario. And it's all starting to calm down, but I'm just finding myself now that for so long last year, having to remain strong and not fall to pieces, I now feel like I am kind of grieving again.

Trudie Marie 49:38

It's like every day, I have a cry, I get yeah. And that's a hard thing to even fathom. Not only are you dealing with this whole ordeal with NDIS and trying to get the support you need for your son and the support that he needs in the best possible way. I mean, he deserves a chance to live a normal, happy life where you just get to be his mum without being his carer, but then to lose your support network through all of that, and you're now, like you said, you're having to help grieve the loss of your mum, but then also deal with your dad. It's not like you're you're you've lost your support network, but now you've doubled in your caring role because you're not only looking after Ben, you're looking after your dad. How is all that for you? And what have you learnt about yourself inside of this whole ordeal?

Grief, Boundaries, And Starting Again

Cherie 50:38

Well, I've learned that I'm a lot stronger than I ever thought I was, and then I am capable of managing all of these things, but I'm at a point now where I just I don't, I just want to be on my own. I just want space, I want time to breathe and to heal because I feel like my nervous system's completely shot. And I do love looking after people. I have that trait from my mum, and I love helping people and giving back, but I know that I can only do so much, I need to look after myself, and that's when having my partner Scott, who's such an amazing rock to me. So he when I'm around him, I do feel like I can just relax and he can take care of me. And if I didn't have him, I would have to just be solely reliant on my friends, but they have their own lives as well, and I'm the sort of person I don't like to be a bother, and I just kind of just carry on and get on with it because I know they have their own stuff they're going through in their own lives, and yeah, so I do try to get the get counseling when I need, but they can only help so far as well. I just feel like, well, I guess it's just time, it's gonna take time to heal to just accept that I don't have my mum around anymore, even though she's around and I talk to her all the time, it's just not the same. And so I just try and focus on the all the good things that I like, doing. And I'm trying to just teach dad that he can be independent and he can do these things for himself because he relied on my mum to do everything. I didn't realise how much. But my mum was the person that would be running around like a headless choke, like I am now, and I feel like I've kind of stepped into her shoes in a sense. So I just know that I've got to be strong, and I am strong, and I can I just need to set those boundaries where my dad's concerned and still be there to help him because at the end of the day, he's my dad, and I want to help him, and it's easy for people to say that you've got to just tell him no and all that, but it's it's it's not that easy when I know he's not that well himself.

Trudie Marie 53:16

I just want to acknowledge who you are and your vulnerability in sharing this because I think there are so many other parents, children, carers that are doing what you're doing, not in the same way, but they're right along with you, they can hear the anguish in your voice, they can hear the emotion because it's not an easy journey. It's a it's freaking hard for a lot of the time. And I think that I'm no, I'm going to ask you this. What is the one piece of advice that you would give to somebody else that is currently in your shoes or similar shoes?

Hard Advice For Carers

Cherie 54:01

Basically lean on those that are close to you and are around you, take them up on their offer of them wanting to help you. Don't feel like you have to do it all alone, and schedule in time for yourself. Because if you don't, you will just come crashing down. And it's not a nice place to be because a few times I did, and it wasn't, especially last year, it wasn't uncommon for me to feel like, oh my god, is this my life? I felt completely stuck at the first half of the year because I couldn't see a light at the end of the tunnel because things weren't for me moving quick enough, and I know I just had to be patient. So you've got to be patient, lean on those closest to you and set time for yourself because that way you can stay level-headed and balanced and focused and happy in your own well-being. Because many a times I would be walking and I would feel like I just don't want to be here anymore, and I would never do anything because I just wouldn't, because I wouldn't want to leave all my friends and my family and my kids, you know. I wouldn't do that, but I just felt like this is my life. I just don't, yeah, I felt just so low that I would have those thoughts of I just yeah, don't want to be here, or I'd wake up in the morning and I just don't want to get up and face the day. So I take that time out for myself and reset, and then I would be all right to carry on. So you've got to listen to your body, your thoughts, and implement all the things that you hear on social media and everything. It is so true. You've just got to go for that walk, get out in nature, talk to a friend, look after your own health and meditate and do all those things that do actually help you. Some people get to a point where they just said, I just can't, I just can't. But you know what? You kind of got to force yourself because if you don't do that for yourself, then no one's gonna do it for you. There's only so much others can do for you. You have to make that that choice.

Gratitude And Closing Notes

Trudie Marie 56:24

I love what you just said there, because as the old saying is, you can lead a horse to water, but you can't make it drink. And it really is up to you to make those changes, to make those differences in your daily life to help you get through whatever it is you're going through. So I want to thank you so much for sharing what it's like to be the parent and carer of a child with special needs, because it's not an easy journey. I've seen it firsthand within my own family. But to have the courage and strength to keep going one day at a time, to keep fighting the system, to get the care that you need for your child, which ultimately is going to give you the freedom to care for yourself. So thank you for doing that. I wish you all the best with what's going on with the NDIS submission. But I always like to finish the podcast by asking you what is the one thing you're most grateful for today?

Cherie 57:31

I'm grateful that I was able to wake up and enjoy the sunshine and meet with you on this podcast. Just grateful to be alive because not everyone gets that choice or option.

Trudie Marie 57:49

Thank you for tuning in to the Everyday Warriors podcast. If you have an idea for a future episode or a story you'd like to share yourself, then please reach out and message me, as I am always up for real, raw, and authentic conversations with other Everyday Warriors. Also, be sure to subscribe so that you can download all the latest episodes as they are published. And spread the word to your family and friends and colleagues so they can listen in too. If you're sharing on social media, please be sure to tag me so that I can personally acknowledge you. I'm always open to comment about how these episodes have resonated with you, the listener. And remember, lead with love as you live with one wild and precious life.