The Word V
The Word V
Dealing with the diagnosis - feat Shanny Fitzgerald
There are various things that you can encounter as a parent, a diagnosis to an illness or disability is one of them. In this episode I'm chatting with Shanny Fitzgerald on the Autism diagnosis of her son Reef, I also share my relatability, on the diagnosis of Biliary Atresia with my son Ari.
More about Shanny:
Wild Spark is a dynamic, balls-to-the-wall copywriting studio working with whip-smart upstarts around the world from a lil’ slice of radness called Brisbane, Australia.
Founded by Shan Fitzgerald, a bold, plucky, profesh-ish writer and former English teacher who knows her shit from her shiz, Wild Spark specialises in personality-fuelled copy for charismatic, human-AF brands that fly off the shelf. (Screen. Box. Whatever.)
Shan's trademark #NoBS words have been used to sell scratch-made chicken nuggets in Los Angeles, featured on kid-friendly dinnerware sold in Japan, plastered (no pun intended) across witty wine bottles in New Zealand, and given life to sass-mouthed candles gracing the shelves of MYER stores Australia-wide.
When she's not helping rad products get noticed for all the right reasons, you can find her talking about books 'n' booze on her podcast F*ck Your Book Club, posting snarky memes on her Insta (#ShamelessSelfPromo), or loving hard on her scuba instructor hubby, Dan, and adorable, amazingly Autistic son, Reef.
Find her at:
IG: Wildsparkcopy
IG: Fckyourbookclub
Website: wildsparkcopy.com.au
Join the conversation over on:
Instagram @iamtaraladd
Linkedin tarajoyladd
Website taraladd.com
Just a heads up if you've got little ears around this podcast contains some swearing. Hi, you're listening to the Word V, a straight shooter podcast that generates real conversations about the systemic issues surrounding working women motherhood, business ownership, and society as a whole. I'm your host Tara Ladd, owner of brand design agency, your one and only mother of two boys and a champion working in a balanced society. Hey guys, thanks for joining us today. I have Shani Fitzgerald here and I'm gonna swing the mic over to her and let her introduce herself.
Shanny Fitzgerald:Oh Tarz love chatting with you. Hey guys, I'm Shanny. I am the founder of a little balls to the wall copywriting studio in Brisbane called Wild spark copy. And I'm super stoked to be here. Thanks, TARS.
Tara Ladd:LOVE having chats with you. Now for anyone that doesn't know who Shan is. We are really great business mates. And there's obviously a reason why I'm bringing on a lot of my business mates because we are all very much value aligned. today specifically though, I want to talk about dealing with your child's diagnosis now for those who know obviously speak about it quite frequently or he's had a transplant. So I'm going to relate on that level with Shannon but I'm going to ask Shani to tell you all about her beautiful little boy reef and what she's been dealing with. So Shannon, let's talk about reef you know, as a child, and when you realised something wasn't right.
Shanny Fitzgerald:My little dude Reefy is four and a half now. And from day dot, he's been a super chilled little guy. We named him reef because my husband is a professional scuba instructor. And I used to be a diver when I was cool. And we got pregnant with reef. The week we got back from living on a little tropical island for two years in the South Pacific. So you know, we had this baby, and we were never planning on being parents. So reef was a massive surprise. And it was a super chill baby. And then it was when we started. He was around 14 months old when we stopped living on an island and we came back to the mainland. So he could start kindergarten or preschool pretty cool at kindy daycare, daycare, sorry, daycare. And for the first year, we get, you know, ticking along but I noticed that reefy wasn't hitting milestones the way a child should. And because I am a former teacher, so I'm a primary training teacher. So I spent my first year of uni learning all about early childhood development and the milestones they're meant to hit. But whilst that part of me was wondering, why isn't reefy hitting a few things? Everyone else in my family was doing the whole, you know, are we your brothers didn't talk to these boys are slower to develop and oh, well, you've lived on an island on your own for so long. You know, he's just not used to being around kids. So there was all these reasons why. And it wasn't until his second year of daycare when we moved to a new daycare. Within six weeks of him being there. His educators said, Look, we just want to have a little chat to you about reefy we think that he might be Speech Language impaired. And I was like, oh, okay, and I was like, yeah, like, we all know, he's basically mute. But he would make sort of some noise like he would be vocal. So he would vocalise by making squealing noises or grunts or whatever, but he wouldn't really talk. Um, so we went into the process of Oh, yep, sure, I'll get him Speech Language assessed. And then like, the next week COVID, the first round of COVID hits. This was 2020. And I was teaching at the time. So basically, I'd put my child on the backburner while I suddenly Transition to Teaching Online, which was a whole thing, you know, and it was difficult to get appointments and stuff like that, you know, all of that shut down. And so I think it took us like six months before we finally got reach, race, Speech, Language assessed. And we couldn't actually get the assessment done. As in we went there and everything but the lady like the Speech, Language, therapists couldn't actually complete the assessment on brief because of this behavioural stuff, and her report came back saying, you know, we don't believe this is a speech language impairment just on its own. We believe that this is a part of a wider thing, which is autism, he hits the indicators for autism. So that then took us down that sort of path of, of discovery, so to speak, and all the process that comes with getting a child diagnosed with autism. And then, yeah, a few months after that, after jumping through lots of hoops and by bypassing the public system because that was a way way big, like, you know, way too long to wait. And I'd already waited long enough. We went through like we paid privately and Rafe was diagnosed with autism about a month after his third birthday.
Tara Ladd:Yeah, right. It's interesting, right? Like that whole COVID locked down and how that's going to have so much ramifications for so many things like I no different thing. But Ari had. He's got it. He was getting really bad tonsillitis and he was in hospital like six times over three months last year, you will remember that time. And not nothing was happening from it. Like we're never getting any virus symptoms. And you know, we're in hospitals six times over that time. And it wasn't until later we went to the paediatric dentist. And they were like, you know, I think his tonsils are inflamed. And I was like, Yeah, F has no one noticed this. And I think it's just because everyone was like, you know, we sick, his tonsils are inflamed. And yeah, they were like, We need to get him in to see an end. And it wasn't until, you know, they're like, this is like an 18 month wait, now post COVID, like surgery was like, so we're still waiting. But we've been pushed through because of our mission and our last hospital. But like, you know, there's so many things like this that are way like, I mean, he's got sleep apnea, but it's this is an old, crucial thing. But something like that is detrimental to, you know, diagnose early so that you can have some kind of coping mechanisms in place, right, like the back
Shanny Fitzgerald:load of children out there who are going to be impacted by the two years, we've had a COVID, from an artistic point of view from getting diagnosis from getting that support. The ramifications of that are just huge. And until you're a part of that world, you don't understand because as a teacher, I know that early intervention is everything, the sooner you get onto it. And it just makes the world of difference. So for me to get reef diagnosed at the age of three, and that was with a lot of hoop jumping. And that was with a lot of pushing. And that was with a lot of, again, my privilege of having an education background, I knew the hoops to jump through, I knew the language to use having worked with autistic children. Um, you know, I was very forceful, and I was lucky enough that I had the the financial money just like, you know, the financial side to be able to say, I will pay for private people to get him assessed because I knew that COVID wasn't just going to end anytime soon. And I felt so guilty that I bet almost a year passed or you know, like the eight or nine months pass and I hadn't done anything. And I was like, right, put my foot down. Let's get this sorted now. But yeah, the ramifications for the children who don't have access is huge. It's it's going to be a massive thing going forward.
Tara Ladd:That's another thing even mentioned there. Like even remote learning for kids like that would have been just so hard to deal with. But Oh, my.
Shanny Fitzgerald:I have to say, yeah, that was just one of the reasons why I stepped back from teaching because it just broke me. It just broke me. And I know it broke the parents and the kids and all that. But yeah, that's a whole other.
Unknown:It is another discussion, isn't it? Ah,
Shanny Fitzgerald:so I guess I'll get me started on what's wrong with the education system?
Tara Ladd:And this is part one of the part six chat with Channing No, I guess what, I guess so you've got people telling you these things, right. Like I for one, we were ours was a medical diagnosis. Right. So ours was very different to what you would see you know, they picked up the colouring in his in our E so that was obviously it wasn't anything out of the yard, but like, I guess for you, especially when there's so little, like what like what signs like, you know, as a mum, like, you just have it as a parent, you have that gut instinct that Something's just not right. And I don't know about you, but when people try and make you feel better by feathering, the you know, I guess the things around there just to make them not feel so bad to make you feel better. It's not it doesn't help. So like, you know, saying that, Oh, you didn't speak to this age or you know, one of my other friends is dealing with gaslighting
Shanny Fitzgerald:unintentional, but yeah,
Tara Ladd:it's interesting. That's we'll come back to this question because we know that there's it's loaded a loaded question, but I guess so. Mike, it is what what were the signs that you use or as a mom,
Shanny Fitzgerald:the biggest one for me is like reefy had been hitting from like, when he was born, he had been hitting milestones, you know, like the appropriate, you know, crawling and smiling and you know, burping, farting, whatever. But there was some that he was a little bit slower at so like walking, for example, that I think that was like 14 months sort of thing. In the case of reef like everything with my son. You'll have nothing, nothing, nothing nothing. Then one day he'll just start doing something and then not only will he just start doing that, but he'll go on to the next four or five like yeah, so he walked for like two days and then he went straight to running. So yeah, I noticed things like that. So like he required like that sensory input. So I noticed that when it came to sensory things, his responses were a little bit off. He had been developing a little bit with the sounds and making noises, but then he sort of stopped and almost regressed a bit. And the worst thing is because of the timing, when all of this started happening was when I got my well before that it was when I first started to notice things that was you remember this tire when I took a break from my business and I went back to teaching for those two years. So at the start of 2019, when we came off living off the island, and my husband stayed on the island, and we went lived on the mainland. And we thought that that was why Rachel got really quiet because all of a sudden, he's gone from this quiet little living on an island or no strategy with just mum and dad very chilled, very quiet to being on the mainland in daycare for the first time surrounded by kids and when he just kind of like little dude is just adjusting, but then I would watch the other children his age, and his speech wasn't going any anywhere. I noticed his emotional responses to things when not, uh, not appropriately weren't in alignment. Yeah, with with other children his age. And I just, it comes down to just mother's gut. And also my educate like, my, my, my training and education early childhood just going he should have hit a few milestones by now. But yeah, it was just that and trying to understand yes, we my husband's always like, he just takes after his dad is a bit antisocial. And I'm like, oh, yeah, he might be bad. But this is a little bit more. And because I'm the only one who had that knowledge. And then I started getting be? Well, it's because you work with kids. So at the time, I was teaching a might and I was case managing and looking after high school students who were on the spectrum. So I was getting the whole look, you're around kids with who are autistic all day. So it's like, you know, just because he hoofs don't assume zebras. And I'm just saying wouldn't you
Tara Ladd:think the opposite, right like that? You're? You're more alert to that. Yeah. Weird, isn't it? Oh, but
Shanny Fitzgerald:you know, you teach teenagers. He's a little boy, you know, just because you're around it all day. You're just more attuned to it, don't look for it. And I was just, and then I started to believe it. I was just like, okay, yeah. And it said, I remember when, when these teachers said there was speech language, I remember that broke me. I was just because of that. I was just like, Oh my God, how have I let the star but yeah, that further down the track. And even, you know, just people still saying, you know, I'll just, you know, they're so quick to diagnose these days, I might actually, it's not quick to diagnose. This is a really long involved process. So, and all
Tara Ladd:of it is to like, even in adults, like, as you see, that's booming through the scenes, right, like, you know, adults getting diagnosed, I think, although, yeah, this guy because obviously, and everyone listening, I've got ADHD, um, that was I was diagnosed as a kid, it was almost like a non issue, like, people didn't think it was real. To the point where I just didn't tell anyone I had it. Like, you know, I just figured out how to deal with it figured out how to cope with it. And then as I got older, and everyone was like, you know, oh, let's all get tested for ADHD. I'm like, oh, sorry. Is it cool now? Okay, well, I've had it for years, here's how I've dealt with it. But, you know, it's like you ever brought that up as a child? You know, I did the whole neuro testing things on the head, the listening test was still shittier than you know, all the things that you do to test your, you know, that's not easy. I remember even at me as a kid without those huge long waiting lists, like you know, it was time consuming going to the city and waiting people on you know, like to we times between appointments and even the days there and like that's just intense. So I can't even imagine like, especially in this climate, like how like that's it's coming from a place of inexperience, right. Like,
Shanny Fitzgerald:not and it's the fact that also since you know, TARS not to make you feel old here. But since you were diagnosed as a kid, Oh, tell you that people's understanding of neuro divergence see has changed. I can tell you that even when I went through university as a teacher, and that was 2010 to 2013. So not that long ago. Yeah. The what we were taught as teachers about neurodiversity in autism, I think we had one semester and one subject for Inclusive Learning and inclusive learning how to include everything so your, your, your intellectual impairments, your physical impairments. So you can imagine we didn't have a lot of you know, in depth training, but hey, we're gonna go and teach these kids. So our knowledge and understanding of autism as we knew it back there, not like 20 years 10 years ago, sorry, is so different to what it is now and the problem is, is that we've got all this new research coming out, but unless you keep up to date with yours, and let's say it's like even our schooling system again to jump on it, ADHD is not actually recognised as a disability in the schooling system through can be the state education system in which I live in and used to work. They don't recognise that as requiring support. So if your child is autistic or has an intellectual impairment or physical Yes, you get support in school, you get the full support, ADHD that falls usually under a guidance officers job. And when you have guidance officers who are dealing with other significant issues in children's behaviour, the kid with ADHD in grade seven and I'm telling you he's probably one of like, 300 You're really gonna get a lot of support so yeah, again, that's a whole other thing but
Tara Ladd:this isn't it like it's an art like my brother had ADHD quote, you know, he was the out there, you know, behavioural kind of tight but super, super fucking smart. But yeah, wasted unless he had a good teacher like, Absolutely, they just would just not bother like, because they just didn't know how to deal with him. They just didn't know so it was always like an I remember from my obviously, we were very different. So everyone just used to go Oh, you don't have ADHD because they would consider ADHD the very you know, behavioural thing. I wasn't the same. I was very chatty, very disruptive. You know, exactly who I am today. That makes me mad. So but I used to just get kicked out of class like, that's it tar out you go bang, nega hole mass class of probably the one that I shouldn't have been kicked out of every day on the porch. No bullshit. As anyone who went to school with I would just be sitting on the porch. I'm just like, I don't really know what this is achieving here. I'm clearly not learning.
Shanny Fitzgerald:That comes back because the research into ADHD and autism and all that was done predominantly on boys. Yeah. So like, all the information like when we talk about autistic people, you know, and they say, Oh, that they're, like Sheldon Cooper or Raymond, super smart. And they're this and they're socially awkward and all that. And like, that is only like, one time. And also, it is all about boys. So women, we don't present the same with ADHD with autism with any neurodiversity. So no wonder they're saying, Oh, you don't really have it. That's because the criteria is for a completely different gender. It's very different sex, you
Tara Ladd:know? Yep. Yeah, it's just, I think even like, even, you know, case to case is different, right? Like, oh, my version of ADHD is different to someone I've known for years, like so. Like, people say that ADHD people are very sporadic. Well, they I'm still sporadic, but like, unorganised, messy, like, I'm not that I'm just not that I am. I need to get everything in order. Like, I make sure that I like you know what I'm like, with my website work. Everything's colour coded. It is so meticulous, to the point when all of a sudden I lose, which is where Ari absolutely threw me lose control. I'm like a rendering mess. So like I need to be on top of it. Or it turns to absolute shit. So I mean, just because someone this is my point of view is that someone in their adulthood that has been diagnosed with ADHD that is dishevelled, or feeling very unorganised is because they just haven't been taught those mechanisms, right? And, you know, just because I'm different to them doesn't mean that I don't have it. I am that person. And I had this conversation with three because we all know that she's got ADHD as well. I was driving down the road and I will be having this really in depth conversation or I did have this is a legit story had an in depth conversation with with Ryan. And I stopped. There was this Ben that was positioned on the side of the road weird or something. And I was like, Oh, my God, look at the way that that been. And then instantly in a second, I switch back to the conversation. Like as if I hadn't even had a comment. And he was like, Why do you do that? And I was like, do what? And he goes, You just switched Conversations. I'm like, I because if I don't talk about it now it's just gonna be gone. And then the point of it's just not getting, it's gonna bother me if I don't. It doesn't have sound like this is my, this is my brain. So it's just like, you know, so understand, like, from that point of view, it's like you do you do get that like there's people just like, What was the question and were like already off like, at
Unknown:least for this exact reason, because I know that this would have gone off track. And so,
Shanny Fitzgerald:Cherie, it should be your main Cherie
Tara Ladd:al podcast of
Shanny Fitzgerald:ramblings love.
Tara Ladd:So So let's, let's reel it back in. Got it. So I guess I'm going to spend this question so I guess we hear from a lot of parents that they were in denial, but I don't think that you were to me, it sounds like everyone else around you was. Were you
Shanny Fitzgerald:in denial? I want it to be in denial. Yeah. I wanted to be in denial. And I wanted to believe what everyone was saying. Because at the end of the day, I saw it as I had one job, and that was to grow a baby. healthy baby. And I wanted everyone to be right. And I wanted to be wrong, because if I was right, and everyone else was wrong, well, then that meant that I did something because, you know, babies don't, you know, like, my baby came out. And he was he looked fine, and he was good. And he was doing good to a certain point. And then obviously, I've done something I was his primary carer. I was the one that grew him on the one that birthed him. And so for me, it was going through my head going, okay, is this is it's my fault. Is it? Because I didn't know that I was pregnant for a while. So I was drinking and partying. Is it because I, you know, had a bout of depression. When I first found out I was pregnant, because I was like, Dude, this was not. This was not the fucking plan. And I can't be a mom and had a meltdown. Is it because I had a seat, an emergency C section? Is it because of the epidural? Is it because I didn't breastfeed because I had a traumatic birth. And he laughed.
Unknown:And I was saying is like, I could have, I could be saying this. I'm
Shanny Fitzgerald:going through everything. I'm like, fuck is it because we lived on that goddamn Island. And he wasn't around enough people. Did I put the TV on too long? Oh, my God. That's right. I was working in wild spark. And I'd let him just like Live X. He's a meatloaf. And you know, what was I going to do? I went through everything. My head, you know, was at that time, I was putting him in his car seat, and I hit his head on the Oh, my gosh, you know, you, you run through everything because you think it's your fault. And I wanted everyone to be right, because I didn't want to be the one. You know, I didn't want to be at fault. i So yeah,
Tara Ladd:that's, that. I think that that's relatable on such a broad spectrum. Pun intended. From the fact that, you know, it's, it doesn't matter. I guess what you're dealing with in that moment, as a mother, you do feel like it's your fault. So yeah,
Shanny Fitzgerald:it's mother's guilt. Yeah. And
Tara Ladd:I think I'm gonna get emotional here. I can tell I can feel it. Like,
Shanny Fitzgerald:yeah. Feel it, you just, and, you know, intellectually, you are an intellectual, smart person. And you know, it's not, you know, it's a genetic thing. You know, that shit happens in nature, and we can't control it. And you know, that as mums, we, we would never do anything that intentionally hurts our babies. Yeah. But when you sit there, and you go the other than that, I can mom part of you and you just sit there go, Well, who else is that?
Tara Ladd:And who else? And I know that you saw that. And she jumped right into absolute. So this is how it was like, I remember being in the bedroom. And I was like, I can't even make him a fucking organ that works. Like how, like, you know, and you go through these moments of just how you don't fail as much.
Shanny Fitzgerald:Yep. And it's so hard because you feel like, shit. They're so young. How did I fuck up so soon? You know?
Tara Ladd:Like, totally right? Like,
Shanny Fitzgerald:You had one job. And it's like sitting there. And it's, yeah, you just go fuck, I just, I had one job to do. And I've already fucking failed. So what else am I going to do? How am I going to this? And that's, well, that's
Tara Ladd:the thing, right? No one talks about the emotional load, right? The the emotional load is just fucking massive. And I know that guys go through this. Ryan went through this in his own way. So like, to give you an example, when and I'll talk about this. In a couple of weeks, when I talk about our ease, I'm talking about our story. But it was the way that you both deal with situations. Right. So our he was in getting these transplant, you know, we were waiting and we were told to go away. Like that is literally the worst timing right? So they're like, we're about to transplant your child, take an organ out and put a new one in. Just go away and try not to panic, like you're like, okay, cool. But Ryan went and like ran like 25k Like just around the park that was next to the hospital. And I just sat in the fucking room and watched a wall for three hours, like listening to music. And I was like, just how can it no one did anything wrong. It's just how you deal with it, and how you as a person emotionally deal with it. And like it's heavy on either side of the fence, but I do feel a massive burden on the mother. And I think it's because you make the child you physically make that child. And the same. Like I said, you literally just said all the things that I could have said myself, you know, I couldn't breastfeed for three months. I couldn't absorb the fight, you know, and then you feel like a family because you couldn't give him the immunity Right? Like and now I've got an immunocompromised kid. What if I was able to breastfeed longer? Like could I should I have mixed you know, no, if for everyone listening Yeah, Maybe she should have mixed milk when he literally couldn't absorb the fat. He was on a synthetic fat, you know, formula, but, you know, it's things like that. And sometimes you just have to smack yourself out of it. Like, you know, look, this is totally out of your fucking control here. Like, there is nothing that you could have done. And one of the things that burns me most about Ari's diagnosis is that, and probably for you, too, but it's not it wasn't hereditary for me. Like, this was just a genetic fuckup. Like, you. And I think that that's almost worse, because I can't trail it back to a moment or time or even some kind of background history in terms of ethnicity, or what I've done, it was literally like, across the board, I fucking scoured the internet. I am like researcher 101 And I could not find a thing. I'm talking like, medical resources, because hopefully my doctors miss something. And there's surely something I can find out there. And, you know, searching for them to say, it's your fault, or it's his fault, or this is how it happened. I just need something like, somewhere to lotia Right? Or the blame, that's probably a better word. Yeah, blame.
Shanny Fitzgerald:It is it is a comes down to you need somewhere to blame. So a big thing for me with the with autism, like with that diagnosis is in my research back in the, like 70s and all that the most popular theory for autism. That was that it was That's it. My jaw is going to end
Unknown:up there because we both stand on that.
Shanny Fitzgerald:Someone said to me the day you know you're gonna vaccinate, right for you know, COVID when you can I said Well, obviously I said like, what's he going to do catch more fuckin autism from the vaccination? is about as autistic as you get. It's okay. Yeah, um, but the research back then they basically said that it was due to refrigerator mothers. So they said basically, these all these kids are autistic. They all had something in common. Their mothers were very cold. Their mothers weren't maternal what? Yep, do that. Oh, god, that's heartbreaking. So basically, they were saying it is the mums fault, because these kids didn't have overly maternal warm, loving mothers. So we sit there and go the fuck, but then transpose that to me where I sat there, and I went, I remember when I peed on a stick, and I saw the words pregnancy, I didn't cry for joy. I had a panic attack, and I cried in terror. And my words to my now husband work, I'm so sorry. I am so sorry. He's like what he got to be sorry for and I'm like, I'm fucking pregnant. We're not having babies. We said we were not having children. And now I'm pregnant and I don't know what to do. And that sent me into a spiral for you know, like,
Unknown:to tango,
Shanny Fitzgerald:I know and you know, like, but then again, and then I had to go on antidepressants for a little bit you know, and so I sit there and I go fuck, it was me. It was me I was and I just like you talked about in last week's you know, your pass about not being a maternal mom, that was me, I'm more of a holy shit. Just figuring it out as I go. I could have had to grow into being a mum. But then that was a big thing. When Ruth was diagnosed, I was doing this research going, shit. I'm a refrigerator mother, like, my fault. And obviously now I know, no, it's not you can laugh at
Unknown:it now. But at the time, like if I was writing this, like, you'd be like, What the fuck Exactly.
Shanny Fitzgerald:But it also came from a place of fear. I now know a lot more about autism and the fact that you know, it is a spectrum for a reason. I've also been able to now reflect on myself and go I think I might know where where this spectrum surfing is coming from or part part of it. Dan does have my husband, his nephew is autistic. So there is looks like there's something on his side of the family. I'm now looking into my side of the family, specifically myself. But yeah, to get back to that it is the blame. It's, you need something concrete, because it's like, you need to know. Yeah, where to put the blame. Yeah. Otherwise, you just carry yourself.
Tara Ladd:Yeah. And it's so heavy. Like it's so heavy. And I think what I found is that, you know, when no one else is dealing with something remotely similar. And you see grow up like, you know, in all your friends having kids at the same time, or you're around kids and they're all just fucking a typical normal kid. No, yeah.
Shanny Fitzgerald:Yeah, that's one of the hardest parts is like, you know, when when your friends are, you know, oh, you know, my child's already doing this, this and this, and you're sitting there going, Yeah, my kid didn't say, love you until he was three and a half. Yeah. And it's, you know, my kids. Toilet training. Very slowly.
Tara Ladd:So hard I think because you Do you want those moments? And I think you look and I think what's hard, right? You know that the newborn stage is so hard? Because you're going through those, when are they going to give back? I'm giving all of myself and when are they going to give back? And I think what the problem is when you do have a sick or you know, disabled child, I don't even like to say disabled
Shanny Fitzgerald:is a disability, it's all good. So as to be so
Tara Ladd:those are essentially considered disabled as well, it's but what I don't like about it is that I just don't like the connotations we need to change the connotation around. Yes, but that's a whole. That's a whole different conversation. Yeah. I think, yeah, I think you'd look forward to those moments of progress, right of those milestones. And you find that when you're not hitting those, it's like, you're not giving all of everything, but you're not getting it back. And then you start to be like, is this what it's going to be like? Is Am I have I have I done something right? Like, why am I not getting by knowing your hard, it's hard like, and I know that you know, you're from a different place, mine was physically it was behind intellectually, he was fine, because obviously, the only thing you can do with a kid that can't do too much physically is read. So you know, cognitively, he was great. And he still is cognitively Great. Can string a sentence together more than most girls his age, which is saying something, consider where you know, our vocab double. But you know, and I guess he's got to keep up with his mother. But it was, you know, because he had abdominal surgery, basically, like, he didn't roll until after he couldn't sit up until after he got out of surgery, because his liver and his spleen were inflamed. And that was what, you know, nine months didn't nearly 10 months, by the time he came out, he was almost 11. So he kind of stood up at 11 months, most kids are like crawling around almost walking, you know, he didn't walk till he was 22 months now. You know, I know that kids walk on a broad range, but this kid was like, you know, you knew that he needed to be walking earlier. And yeah, and then you start to wonder how much does this affected his his development? And it's an it's an that you can relate from a completely different level, but you start to go like, what how is this going to affect him later on in life? And, and what and you know, from from that stage of, you know, it's an early early intervention stage. So it's like, you know, then we're getting calls from OTS. Like, what's your like, at daycare? Do you have a plan? Like, what's it going to do if you can't walk and blah, blah, blah? And then like you, like are you just got up at 22 months of bloody ran? Like, he didn't just walk two or three steps he walked in, and then all of a sudden, it was a non issue. So then, you know, and the difference is our life aside from the hospital stay here. And there has somewhat normalised and I guess that's the difference. In this is where I really empathise with mothers like you. And you know, mothers with other kids like that when their carers have kids that are really sick, because that is their life, that is their life that they live day in, day out on such a, like a long term commitment. And no one understands that just that emotional overwhelm like, it is so emotionally overwhelming. And then people say the wrong shit to you. And I posted something the other day on the stories that said, you know, unhealed, people can find a fence in almost everything, I can guarantee you that I found offence in a lot of things. So one of the things that I found offensive in is, if it could happen to anyone, it's you too. Or it was you know, if anyone can deal with it, it's you too, as in me, my husband. And I know that when you say that everyone goes, Oh, why would you say that? But we had that so many times, like, because we were very fit. And we did lots of endurance type stuff at the time. And we were very mentally strong. We did lots of stuff, we'd go get them. And you know, we did we were just High Achiever type people, that everyone was just like, you know, if anyone can deal with it, you guys can deal with it. And I'm like, that doesn't mean that we should have to deal with it. You know,
Shanny Fitzgerald:I got $1 for every time I heard off, well, he's with the right mother is education background and you've worked with autistic kids and I'm just sitting there going. I've worked with autistic teenagers who are around not to use the levelling terms, but like level one, like what we're used to formally call Asperger's. So they have low needs in regard like low support needs. Maybe a level two. My son is a level three, which means he has very high significant support needs. Plus he's a frickin toddler. Third, it's like sure they're all but it's apples and oranges. I am so not prepared. There is a reason why I didn't teach prep. There's a reason why I taught primary school for five minutes and then fucking piece down with their dirty little humans and now you've given me a little human who is autistic. Yeah, you're saying Oh, but at least he's got like, Thank God, he's got you with all your knowledge, and I might I've got about as much fucking knowledge as like someone on the street right now. I am clueless.
Tara Ladd:It's just like it but you and I. This is where I learned had to come at it from a very different and that's like anyone else that doesn't understand you have to really try to understand what what someone is trying to say. If it wasn't for my relationship with some of the people that said it, I probably would have snapped. But knowing who they were, I know that that wasn't their intention, but it was just something. So it's like almost toxic positivity, right? Like, you know, they're just trying to find a positive thing out of something that's so completely negative. They don't know
Shanny Fitzgerald:what to say. They don't know what to say, how have these conversations?
Unknown:That's exactly right. Or in the
Shanny Fitzgerald:baby book doesn't have the conversation or the Child Development conversation about what to say to your best mate, when her child is having liver failure and needs an organ transplant before they even turn one. Yeah. Where's the conversation around? What what's the appropriate response when your friend says, Oh, my child's autistic? Just FYI, it's not Oh, that's okay. Well, of course, it's fucking okay. Like, there's no power and I can't return him. I can't shove him back and ask for a refund. Like, of course, it's okay. I'm not telling you. Because I need your validation. Totally. You know, there are responses, but no one talks about no. written down it is it's different, like us who we're talking
Tara Ladd:about a percent. And there's a difference, right? Because I think with our situation, it's all theory. So outside of people's knowledge, right? Like, they're like, Oh, my God, a liver transplant or a transplant. That's just so I mean, it's like, it's almost like a fashionable thing to go wrong, because it's so I guess, shocking. But when you've got a diagnosis of autism, it's so on the reg, that I think that that support probably isn't given as much as I was given it, because people think that it's just so common, right? Or they don't know what to say. Whereas in my case, because it was something that is happening, it happened. It's done. Like, you know what I mean?
Shanny Fitzgerald:And also like with archery, because you said physically like I remember that time you were going through and I remember the photos you'd send me and yet Ari was yellow like you can physically see with with reef, you know, if you've seen my son, and the most common, normal comes
Tara Ladd:in, like adorable, and
Shanny Fitzgerald:I actually used to get that people would say, but he's so cute. Yes, he doesn't. He doesn't look autistic. And I'm just like, like, what's he what's what does that mean? Like what because he's not does
Tara Ladd:autism have a look? That's nothing to think about it
Shanny Fitzgerald:in the media. Autism does have a look because they're men with like, short crew cuts or whatever, Sheldon and the the expression and all like lack of expression. And then you see my kid who's got you know, the big goofy smile, the chubby cheeks, the big giant eyes and like the mana brow and like the adorable submachine nurse. And people literally have said to me, but he doesn't look autistic. And I he's, he's too cute. And I'm like, what do you need him to be like, and the difference is also people need to understand, my son is autistic, he is a let what we would call Level Three autistic. So he's like the hot it's a one to three level hit. So he has the most highest level of need. However, he is not intellectually impaired my son, it actually tests very high cognitively. His comprehension is there. It's his he can't communicate, right? It's his.
Tara Ladd:And it's also in this connection, the converse. Also his response
Shanny Fitzgerald:is sometimes out of context. However, cognitively like everyone has said it his doctor or the specialists, his teachers, everyone knows this game. Oh, he knows. Yeah, he is very, very clever. It's just that he doesn't he lacks the tools or the ability to respond appropriately. Yeah. But yeah, if I got that a million times, yeah, your kid is he doesn't look autistic. And I'm just like, and that can be really hard because that's when people Yes, sure. The doctor get it right. If you show and I'm like, Would you like to see the six different reports from six different specialists across six different areas? I'm talking to speeches and OT a physiotherapist and behavioural Yeah, like a psychologist, a GP and a paediatrician? Would you like to see all of their reports that all say the same thing? Would you then believe me?
Tara Ladd:It's interesting, isn't it? And like, I'll, I'm going to actually hold on to that and jump on to that question, because I want to say like, you know, what's the everyday life like in your life, but before we jump to there, I was gonna say like, the things that people say it was really interesting because I decided, and I even asked Ryan, if it was a good idea to do it. I decided to document from day one. I found it a form of almost like therapy for me because I like to write but mainly it was because I know what I'm like boundaries wise and if I get too many people asking me questions about something that I don't want to talk about, or shut out or get really fucking shitty. So I straight off the bat said that because I think it was Three weeks in for us. So three weeks in, and all of a sudden you're in hospital, and you're dealing with all these doctors and all this stuff going on. And then people still because you've only just had a baby, how are you going? How's the baby blah, blah? I didn't want those questions. I just didn't need them. So I decided to give everyone a call out and say, This is what's happened to us. This is my situation. I can't deal with any questions right now. So please just don't message me. Yeah, I know. It's a very heavy post. Remember, I said, I will give updates, just please don't message me. What happened from then is all of my friends didn't message me, right? They didn't message me. And all these fucking random blow ins that are acquaintances did. And that really bothered me. I was like, Look, I've specifically specifically said, foreign message me. I'd be really blunt. And it'd be like one word, because I just was some days I'd be fine and reply. But other days, I was just like, I wouldn't even tell this to my friends right now. Like, just get out of my face, like so. Understanding I think the language needs to be and then it got to the point where I kind of needed to tell my friends. Okay, I'm quiet about it, that she now you can ask me questions, because I now feel really lonely, like, so then I had to kind of open up that dialogue again. But all of my close friends knew that conversation. So they would ask, and they would ask how I was asked how I was, they would ask her it was and what is most important about something like that, especially if you've got a child that's going through an illness. Like our ease, I guess, is to ask how the parents are the child doesn't then none the wiser, right? Like they they don't understand what's going on. This is their life. Like this is what I mean, I reckon I put out his happiness. He's such a happy kid and like this, he's happiness is complimented on multiple times every time we see people, but I put that down to the fact that he just was so like me might have been in pain and so unhappy that after his transplant, things have just got better. So I feel that he even when he was like, yellow in hospital must've got he was always really smiley, he's always send the bright, such a resilient kid. But you know what I mean? Like, it's just that kind of constant. Ask the parents, the parents are the one knowing what's going on. They're the ones having the conversations with the doctors, with OTS or anything like you know, the diagnosis of the really hard hitting information, like, please ask them and not just the mother, like you need to ask the Father because sometimes they bottling because they don't feel that they have a place to spit. Ryan was Ryan's a bottle. He's not a talker. So I did that. Yep. So I had a lot of my guy mates reached out to Ryan and sometimes I asked them to, but most of them were pretty good. But it was like, you know, ask them how they got because they've got feelings, too. This is something pretty heavy. And it is a really emotional time. But it's a I guess a lot of my friends were like, What do you need me to cook? What do you need me? What do you need from me like and then and you know, I found that really, really helpful. So or they didn't even ask me, What do I need? Because that just added another layer of complexity, right? They just feel like I'm bringing this to your house or something. Yeah, yeah. And that's another thing you don't want another thing to think about, especially when we talk about the mental load 24/7 Don't give me something else to think about. Just just help. So that was that was really good about that. So what I did we
Shanny Fitzgerald:we didn't get that with with with a diagnosis, but I do remember, we left the hospital. And I told like two of my best mates who were teachers, I told like they knew where we were that day. And for me, the shock wasn't so much that reef was diagnosed with autism, because obviously we've had enough specialists leading up saying, Well, that's what we think it is. For me, the shock was the level and obviously now, you know, I was two years in, I'm aware that levels have a different meaning now, but to read that and to know at that stage that our entire life had just changed. Like we weren't going to have the quote unquote, normal experience as a parent. And I remember leaving, I left like we left pin wherever we were the doctor and my husband's driving and all that and I was just silent and just because again, just wait. And all I did was take because my girlfriend's like facia and everything. Okay, how do we go How's refigure at the doctor's, and I just took a photo of his diagnosis letter. And I sent it to them and I just and I just wrote autism level three, and bless them. They both just came back with like, Okay, I'm going to Google the DSM five, which is the you know, the the diagnosing manual that they use to diagnose these things, and they're like, great, going to Google DSM five level three autism right now. And like, they went off and did that and then they were like, how are you feeling? And I was really lucky that they, they knew to sort of ask me that because again, yeah, reefs life hasn't changed. He's still reached, but for me, like my husband, Dan is just like, oh, well, we knew it was coming. It's okay, we'll deal with it. And I'm just sitting there, I went into like a deep, deep, dark place for probably about three days, I just shut everyone out because I needed to process process that.
Tara Ladd:And you know what's really interesting? Everyone's like, Why didn't you take time off work? Why don't you just like, and I'm like, You know what work is my fucking saviour right now, if I don't have something else to think about, all I will think about is this diagnosis. And all I will think about is, you know, day in day out, and I don't want to do that I need to mentally tough out. And you know, and I felt like, there was there were problems that I could solve in business, you know, I know that it's branding. And it's nothing massive, but it was my way of solving problems that could be solved. And I still felt that I was ticking boxes there. And I was dealing with my shit at home. And I find that please don't ask someone where they're working when they decide to get when they get some heavy news, because that could be their outlet.
Shanny Fitzgerald:I was teaching at Yeah. So the next day, I had to go back because I took a day off to take my kid to the paediatrician, I had to go back to school. The next day, I had to go back to my classes, I had to go back to my kids. And, you know, it was the end of the year. So it's report cards on its end of testing, and interview testing and all that sort of thing. So yeah, I had to kind of like, go, alright, well, that's done. So I would, you know, I had to put that aside to be there for my students the next day who had, you know, significant needs, so it's
Tara Ladd:insane. Hey, like that, like even now going back and thinking about that. It's just so heavy. It's like, there's literally someone's sitting on your chest, and you just have to keep to keep smiling and moving. And I remember writing a post, and I guess this is coming from places that the moment someone was whinging about someone that cut them off in the cars like, mate, you got their fucking bigger things to be worrying about right now I have to, this is what my thought processes are. And I know that this sounds quite morbid, it's that I have to wait for someone to die to save my child. And then and then you're in a really like, you're in that is such an emotional load, because you know that someone's going to lose their life in order to save your sons or you know, your child. And that is a heavy, heavy thing. And I will speak about this, like I said, in a couple of weeks. But, you know, you're not just dealing with with, you know, the emotions of when you get the call, like you're elated that you've got this call. But at the same time, you're dealing with this ripple of grief of someone else that's just lost their life. And I know one of my friends called me, one of my teammates called me in line and said that they didn't, they were going to die anyway. And I know that I know that that sounds really bad. But they were going to die anyway. So it's not like you made them die. And I was like, I needed to hear that, like, I really needed to hear that. So you hear of all these beautiful transplant families from both sides of the fence, and there's actually a group on Facebook. And it's really like humbling to listen to the stories of the recipient and of the donated family. And it's created this connection. It's really beautiful. But yeah, I think that that that emotional load is just it's just so much and I guess what's the family dynamic change? How did that change? Like?
Shanny Fitzgerald:I love said, I've told you this before. And if you are, you know, part of the wild Spark, you know, crew, you would know this part of my story. But the week that reef got diagnosed was that was one of two big things that happened that week. So my son got diagnosed. And then I also got told that my role as a teacher was being broken up. So I was teaching, like, I was doing, like remedial writing for kids who were dyslexic, or like below, like getting DS and E's in English, or had, you know, there was a reason why they were not so great at English. And I also taught the AAC LD kids. So I was in that sort of support teacher role. And I was told by admin by the principle that my role was being chopped up and redistributed because they were going for a different way of supporting students, which happens in education all the time, blah, blah, blah, long story short, your contracts not being renewed in this in your position, however, you can go and apply for other jobs, we're letting you know he can apply for other jobs. And I literally just looked at him and I just spent all good not happening. I'm not applying for any jobs. Thank you very much. I appreciate the opportunity. Appreciate you telling me but no, I'm walking away. And he was like, no, no, like, like, you know, we're just letting you know, so you don't have to like quit like and I said no. My son has been diagnosed with autism. I have just spent two years
Tara Ladd:in this shithole fucking job that stopped me from like noticing.
Shanny Fitzgerald:I spent two years giving my all to my students. And I did I said, you know, we lived in northern New South Wales, and I taught on the Gold Coast in Queensland. So when the when COVID happened, I Yeah, we were crossing a ball. Every day so my I have to get Rafe up at like 430 in the morning, get him dressed, to do a two hour border crossing. Sometimes I think the longest we once did was three and a half hours, just across the border. And I get into kindy and dumping and candy, the minute I opened, then I dashed to school and getting everything done getting all my everything done in all my different roles that I did put on a smile and go and be a teacher and meet all my students needs and be everything. And because it was online learning trying to engage my kids through online when when you have disengaged students, it's fucking an uphill battle. And then you know, doing all the other things and then I'd pick up my kid late from kindy because I'd stay behind to get everything done to try and be you know, Miss Perfect and have it all done. And then I'd go home. And, and also at the same time, I was single parenting five days a week because my husband worked away. So he was only coming home for two days in the middle of the week. So I didn't see my husband for two years, basically. Sorry, three years. And it was just all of that that just came to a head of two years. And I sat there in that principal's office and I thought, You know what, my son has got a disability that is going to really impact upon all of our lives. I've just been let go of a job that quite frankly, I'm pretty fucking disenfranchised with right now. Like, if you're going to say goodbye to a teacher who gives their all like I have, and you can't even find the one little fucking job to do in this whole school, then you know what you can get fucked. I'm gonna go and put all my energy into this kid. Because also guess what, motherfuckers I have this really successful business in the background. I've kept chugging along for two years, not because I'm a teacher, part of a number of Yeah, I can't promote it. Because if you know, while Spark, I'm a little bit spicy with the old language. So
Tara Ladd:to be honest, let's call that out. I'm really surprised we've tamed it down. We're having this conversation.
Shanny Fitzgerald:I'm trying really hard because I have done a few podcasts where they're like, Oh, we're really gonna have to bleep a lot of this out. And I'm like, fuck me. It's not really they're not on this one. But underneath the education umbrella, you are not allowed to have a second job. If you do, you have to declare it to the fucking government. And obviously, we get taught very with we go through a lot of PD around what's appropriate to put on social media. As teachers, we have hardcore gag orders over what we can and can't do. You know, especially because we have savvy kids, one fucking Google of Miss Madison, it's, they're gonna find me. So I basically had to keep my business on the download for two years, I worked every weekend, every free night, every student free day and every school holidays for two years. So I still did client work non stop, but I couldn't promote it. And so I split still ticking along. So I think you and I even did a project together during that time, because we were just sort of sat there and was just like, You know what, fuck you education system. Fuck you, everyone. I'm back to my I'm gonna get back to my business that kind of kicks us and I'm gonna be there for my kid. I'm gonna put my kid at the front. And I'll tell you what is been the best fucking thing I've ever done.
Tara Ladd:And you know what Q though reason for more mothers starting businesses, honestly, like I think women need to start businesses these days purely just to get that flexibility. I'm really hoping that changes in terms of other employers, you know, creating more flexible work, workplaces, but there's no way I can guarantee you no way I would have kept an advertising job. If I had to take all that time off with Ari. There's just no time. And COVID worked for us, right, like the whole remote thing. Like Ryan was able to stay home with Ari. Prior to that, who knows what would have happened like he just wouldn't have been able to be there, which meant that I would have had to have been the person staying at the hospital 24/7 And it would have mentally overloaded me like I can guarantee you, we needed to do that switch at the hospital, just to kind of remember that we were human and our own people. You know, it was it's full on.
Shanny Fitzgerald:Well, we had to kind of do what we did because I said my husband runs a scuba shop and hostel on an island. So what he does and he's a very high level instructor there. Shout out to Manta lodge on the best diving you know, in southeast Queensland sorry but it is but because of what he does because it is so nation so specialised and he is such a high level instructor. It's not like he could just give up what he was doing sort of thing. And you know, I said I this is why I always kept my business going. Always have a plan B ladies have a plan B because even when everything everyone says go back in I went back to teaching I think you and I had this conversation. So I was like, I feel like a bad mother who am I to start a business? I have a degree I haven't even paid my hex debt. I need to go back to teaching and get My My 15% government super and school holiday who tried to talk you out of it you did and a regular farm and I was like, no, no, I have to do this. And I went and did it. And I'm grateful because I didn't want to do it. Absolutely. But I also like to think that is not to be like some woowoo Wangka here. But when I got told that I was going to be working with autistic kids in my role, I was just like, Fuck sake, I don't want to teach kids to fucking not hear for this shit. And I like to think that the universe was kind of like, listen this up, you got some big shit coming your way, in a few years, you need to learn about this. And I like to think that the that the universe sent me to that school in that role to work with those kids and to learn the things that I learned and to develop the compassion and the patience and the understanding of what true autism is and the background. Because I was going to have to deal with it myself. And I am actually eternally grateful, and said, If I walked away from that two years, with that knowledge, and my two best friends, Sophie and Ali, who I who I found in that teaching, if, if that's all I walked away with, but then it was too reasonable. You know? Absolutely. Absolutely.
Tara Ladd:Right. We could talk for days, but I'm going to ask you one last question. What would be your advice to give other people that have been found in a new diagnosis of autism? But their children, parents? Yeah, parents.
Shanny Fitzgerald:Try not to blame yourself. I'm not going to say Don't blame yourself, because you will. Yeah, because that's what we do. Try not to take the time to process it. But also remember that no diagnosis, no sentence on a piece of paper, nothing a doctor says will change your child, they are still your kid. And you know what? If someone said to me tomorrow, we have a cure for autism. And if you if Rafe takes his tablet, he will no longer be autistic? I would say no, because my reefy I don't know what part is reefy. And what part is autism. And quite frankly, I don't want to know because reef is the greatest little human that I've ever met, and I wouldn't trade him for anything, I wouldn't change him for anything. And I wouldn't change his experience for anything. So all, all I can say is that at the end of the day, you will go through a rollercoaster of emotions, you you will learn to be your child's biggest, most fiercest advocate and I don't give a fuck, like don't have to be a Karen about shit. At the same time, follow your gut and advocate for your child because surely if they are autistic and non verbal, they can't advocate for themselves. Like my son can't even say if he's in pain, okay? He can't tell me if he has a sore tummy. He can't tell me if he has a sore throat. So I have to advocate for my child just by my gut instinct on what is going on. And that means sometimes I have to advocate for him against my own husband. My husband says like, Yeah, he'll be right. And I'm like, No, he won't be like, Oh, he doesn't understand. I'm like, No, he does understand, we just have to, you've got to slow it down and work around it. So you know, take time out for yourself. advocate for your child, love your kid fiercely, exactly as they are. Seek out people find your people who understand. And if you can't find them, then then educate you know, the people in your life so that they hopefully will understand. You know, don't apologise, although I'm terrible at that. I'm often I'm the first to say I'm so sorry. Like, we'll be somewhere in briefs making noise. I'm like, I'm sorry. He's autistic. And I'm dopamine. Like, I'm sorry that he is autistic. I'm like, I'm sorry. You've been or whatever. Because you know, we've got the flapping with the squeals you know, and for some people, it's very off putting and I have to say like, he's not being a dick. And he's not being like, you know, oh, control your kid know if that's autism. I
Unknown:can't do much about it.
Shanny Fitzgerald:Yeah, but I am. I am writing I have written a book. Remember you told me you gave me a June July this year deadline last. You gave me a fucking deadline. I remember that. You will like by June 30 or something you had to have draft one done and I was like Righto, then tasks. So I'm so close to finishing. It's not funny. But it is like a children's book, but it's for adults. And it is basically the process of living with a child or going through the diagnosis. It's the ABCs of ASD, and it will Fox parents through the whole process starting from a so as for autism are welcome you know, you'll learn that it's pretty awesome all the way through like talking about the NDIS talking about things like all the terms like stimming and gagging and all the other language you learn and it goes all the way through to z where basically it says that you know, apart from everything There are a zillion reasons why your child is your child and you love them just the way they are so, so beautiful. I'm really looking forward to getting there. I can't wait to because it's it is the book that I wish that I'd had. You know when Ralph was diagnosed because everything out there is just so interesting
Tara Ladd:changes right like this is the reason this podcast exists is because I want these conversations to be the things that you find when you don't have the diagnosis like these are the things okay so for everyone that is really interested in Shelley and I think you should follow her stuff anyway. She's freaking hilarious. Where can people find you name all of your things even the fucking book club Oh listed.
Shanny Fitzgerald:So you'll find me when I sporadically pop into in start at Wild spark coffee. And yes, I have my own little podcast called fuck your book club. If you're looking for it on instal, I had to put the Asterix where the EU was because it was offending too many people and marketing and all that yada yada. But yeah, you can find me there. Look me up, you know, Google me whatever you need to do. But yeah, you'll find me or as Tara because you know, we're talking like every week so she knows where to find me.
Tara Ladd:All right, Shan. Absolutely amazing chats. As always, thanks so much for joining today. Speak to everyone next week. If you enjoyed this episode, don't forget to head over and rate and review. It helps other women know around. Also, don't forget to follow along on my Instagram page at@iamtaraladd or hit up www.taraladd.com