[Music] [Narelle] Hello and welcome to episode whatever number it is of the Digital Access Show. Yyes, I've lost count. We've had some amazing guests. Last week we had a wonderful lady called Meryll Evans, who is born profoundly deaf. And was very much of the. She lived in the USA and we talked about the differences between USA and Australia and digital accessibility. And did a bit of a comparison and yeah, shock of shock no surprise's there. There's not much difference and in reality it's going to be a long time before everyone uses digital accessible techniques. This year, this year. This week, I want to go to the other end of the spectrum. My guest this week is a wonderful lady who I met through Studio Pilates. In reality, she actually is the owner of the Studio Pilates Hamilton Portside in Brisbane. I was going to say website, business. And I do Pilates. And then, when Amber and I started talking, we had a few other things in common. Amber Adcock, thank you. Thank you for coming on. [Amber] Your welcome. My pleasure to be here. [Narelle] I will tell you Amber has rescued my shoe. Rescued my sanity, made me laugh. But today, we want to talk about something we both have in common. So Amber, do you want to tell us a bit about yourself? And then we can discuss what we have got in common. And it's not vision. It's not a vision impairment. [Amber] So, I have three children. I've got Lily who's seven. And I've got Hugo who is nearly turning 4 in May. And then we have Little Freddie who's our pocket rocket child. And so Hugo, our middle child, he was born premature. He was born at 27 weeks. He was 040 grams, which is tiny. I think when you're thinking, that's under a kilo at the time. And it completely threw us. That whole situation. And yeah, so I obviously own Studio Pilates at Hamilton. We've had that studio since 2021, I believe. If I'm thinking back correctly. It's been quite the ride. And that's pretty much somes up me now. [Narelle] The thing we've got in common though, is our middle kid. [Amber] Yes. A little boys who are ASD. So my Hugo, the 27 week premmie baby. He only recently has been diagnosed with autism level three, nonverbal. And to get to that diagnosis was actually quite, I'd like to say ride, because there were no definitive answers. And as the mum, you sort of have a gut feeling and then you pay the professionals to be told otherwise. And then you sleep at night because you're like, okay, well, you know, the one that went to university. And who I've just paid $250 for They said, no, he's fine. He's fine. So you let it go till the next thing or the next comment from a family member or a friend. And then it's raised again. I've got, yes, getting that diagnosis, although it was at the time mourning a bit of a loss. It was sad and it's hard to explain. I know there can be a lot of worst things that can happen. But I think you just want the best for your child and then you know, okay, this isn't going to be easy for them. And no one sits you down and says, okay, here's your diagnosis. This is what you need to do. Like we were never given that. It was just okay. So ASD level three. That's the highest on the spectrum. He's non verbal. I don't know if he will ever speak. It's too early to tell. That's a, like, very common phrase, too early to tell. Which is what I like to hear as a parent. Because you're like, okay, well, I understand that. But I'm just trying to map everything out in my head. So you've really just got to live in the now. [Narelle] You've got these other children, at the same time that you've still got to care for them and provide for them. So my story was a little bit later than yours. So Nic was nearly nine. And the only reason he was diagnosed is my oldest son is ADHD. And I took him to the developmental pediatrician. And of course where he went Nic, my other two sons went. And Nic was over in the corner doing whatever Nic was doing. And the developmental pediatrician looked at me and said, yeah, your oldest one's ADHD, but that one's aspergers. And I went, oh my gosh. Where's my husband? He's at work. How am I going to handle this? And my youngest one sitting there just being David and he said, oh, he's normal. And I said, What's normal? They're all normal. But it's, it is really, it's an awful feeling that first few months because you worry about where they're going to end up. Where you're going to end up mentally and physically and emotionally. And what about the other kids and your husband and your marriage. And suddenly it all, to me, it nearly like it exploded a bit. Until I could say pull your head in. Settle petal. Which became my saying for a long time. Settle petal. And one step at a time. [Amber] Yep. That expression. My person of that is Jed. He's the one who's always grounding and like, I'm getting upset and he'll say, you know, he's lucky to be alive. He's lucky to be here with us. This isn't the worst thing that we can deal with. And I'm like, yup. Okay, bring myself back down. But it's still okay to feel the way that we feel in terms of, you know, of you worry about the other kids, you worry about yourself. You marriage, everything that you said. Because it is a lot. And you're only the best for your children. All of them not just singling out one. Yeah. [Narelle] What are the communication challenges that you're currently experiencing with Hugo? And I never use the word barrier because a barrier is something that can't be fixed. It blocks things. And I always say challenge. Because nine times out of ten, not all the time, but nine times out of ten, there is a way around it. So what are you experiencing at the moment? You and your husband with Hugo and your other two kids? Because it's a family unit. [Amber] Yes, I would have to say that Hugo is getting better. I don't feel like we're in the worst of it at the moment, but what we're experiencing at the moment will probably be. I feel like Hugo knows in his mind more, like things that he wants. Like he's got more drive to do or want things than he ever has. But he doesn't have the skill set to tell us. Which is hard because the, you know, he will want something so random that he might have seen on TV. That's etched in his mind and he's like, okay, I'm going to do that. But we have no idea what he's talking about. So the frustration and the breakdown is massive. And then obviously Freddie and Lily are on the receiving end of it as well. They're there watching him have a breakdown. And I'm nearly borderline having a breakdown when, you know, you're trying to work out what he wants. So I would definitely say that as he's getting older, he would expose to more and there's more things in his little mind that he wants to do that he just cannot communicate to us. Like it's not as simple as just, I want toast. I want water. I want a milk. You know what I mean? Like, I do painting at Kindy. So why there are no paints here or, you know, he'll grab a makeup brush of mine and think it's for painting. And then I'm trying to explain, no, that's not. I don't have paint. And it's a breakdown. Like it can be something so small. And you don't want him to feel like you're disregarding that as well. So you try so hard to work it out with little clues. But yeah, that's probably the hardest moment. [Narelle] I feel for you there because I had the same. And it, it it, it just, you don't know where to go with that communication challenge because until he's able to become more verbal or until there is a way that he will react to. And it all had to come from Hugo. It can't come from you saying Hugo, we're going to use that computer and do this. Because there could be too much on the computer screen that will distract him from what you want him to do. And that, you know, I know with Nic, we didn't have computer at that level back then. Because we're talking, you know, 20, 23 years ago. Oh, gosh, I feel old. But even then, but I'm not. I'm definitely not old. But what I'm saying is the level of activities on a computer back then definitely aren't what they are there now. Do you find with Hugh, Hugo that if you're on a computer with Hugo or doing an activity on an iPad or something, that he is very focused and he can do that quite happily. Or is there something with Hugo? I know for Nic it was Thomas the Tank Engine. And there was this show called Hooly Doolie. And it was those two things. [Amber] I remember that show. [Narelle] Yeah, well, that was sorry. I'm over, Hooly Doolie. So don't dare sing it. [Amber] It was a weird one, that one. [Narelle] It was. I think the hammer went through the video cassette. After about 40 on one day, over and over again. But it settled him. But Nic, the other one was AFL would you believe. AFL was the difference with Nic. He could sit and watch an AFL game as a four-five year old. And he loved it. And it was always the Lions. I'm sorry. It was no Melbourne team. It was no, anything else. It was the Lions. And he was fascinated. And that's where his speech started coming in. Because we ended up having to use things like AFL. What about you? You noticed things with Hugo that you can say, well maybe that's a channel in. [Amber] He has his iPad. And I can tell you now that I have never seen a three year old so good on an iPad. I've had a phone. And I think one thing we've noticed lately is he really is loving watching back videos of himself. And there's almost this element of he will grab my hands to film him. And he will do something and have a little smile on his face. And then he'll rewatch it. Mind you, he'll rewatch it probably 25 times on full volume. But that's fine. That repetitive behavior. He does love. He's. There's a Thomas game that he's just got into. And he's started saying all the Thomas the Tank Engine's name. So it's like, Mia, Percy Thomas. And then he'll actually have his iPad there and line his trains up and push one by one and say the names. Which is only been a new thing, but it's stemmed from the repetitive Thomas the Tank Engine game, hearing that because it says it the same time in the same order every single time as we all know, but we're just so used to it. It's background noise. So yeah, we have noticed that. And he does love. And this is probably frowned upon parenting, YouTube Kids. Although we have had to ban a few of the shows that he will watch. Because he will watch Bluey in Japanese. And I'm like, okay. [Narelle is laughing] [amber] You know what I mean? I'm just like, all right. We're, we'retrying to speak here. We don't need to you start speaking Japanese. English would be great. [Narelle] Oh, I love it. [Amber] I know. And he will be obsessed with it. Like he'll put on ABC. ABC Kids IView App. He'll put Bluey on and somehow managed to change it to Japanese. And I don't know how. But whatever works. And so yeah, we do notice the repetitive watching or playing of games. Like that's helping with some of his speech. So yeah. [Narelle] We found the same. But with us, it was Jonathan Brown. Jason Akermanis. Michael Voss. Oh my god. Or. And, and I'd sit there and think. [Amber] On repeat. [Narelle] On repeat. And I'd sit there and think, oh my gosh. I can say to this child, what do you want for lunch? And it'd be, the only thing he'd say, "What Peter says". Peter's my oldest son. And Peter will go Nic wants the peanut paste. And I'd say,No. Nicholas has got to ask. But if he'd be watching footy, Michael Voss. Akermanis. Oh, for gosh sakes. I am so sorry. We weren't going to talk AFL but it does. [Amber] There we go. [Narelle] There we go. AFL's had a big profound effect on him. And one of the things I really noticed when Nic went to school. And it was Nic that, was obviously he had the problems all along. But when Nic did start school, he had big challenges with writing. Because he didn't have the fine motor skills that you need to write. And like, to run. He didn't have the strength. The muscle strength. Because he was very low muscle tone. And all these things. And where that impacted obviously with his communication, with his writing, his education. It was a massive problem for us. So yeah, I mean, for you, it's a different era. Because there's going to be a lot more laptop. And obviously Hugo's already got it. He's got his iPad worked out. So there's a lot more help. And I'm ready pleased about that for you. What, what's the rules and what's the ages that these kids go to school now. Because what, he's nearly four. So, how do you, how do you anticipate managing that education process with the extra communication needs that he's going to have. And the accessibility needs. [Amber] Yes. So we're in that circling back to that phrase. It's too soon to tell. We've been hearing that. So obviously you would love for your child to go on into mainstream schooling. Like especially with his sister and his brother. We don't know if that will be the case. And admittedly, nowadays there is a lot more support in schools for children on the spectrum and all special needs. But it's whether or not we want to put them in that position. Because I felt like when we had Hugo. So Hugo's in an ABA therapy. I think I mentioned to you. He started there in a Feb this year. And honestly, he is really starting to thrive from that. Which is amazing. Like it's been such a short time. But he will, a classic example. They've been doing a countdown thing with him. Because he's an, a million miles an hour. Like he's one thing to the next. Won't wait. If you say just wait. And admittedly that's probably my fault too a little bit. Because I'm like, ok, don't have a breakdown here. What do you want? Have this. Lilly, get that. Freddie, out of the way. Just avoid the breakdown. But we're able to count down from 25 to zero. And make him stop and wait. And he will have eye contact with us. We're counting down. Which is huge. They started that from five. And then they've worked their way up to 25. Which is amazing. Like for example, the morning toast. I'll pop the toast down. And normally he will press the blue button to flick it back up. And I'm like, explaining. Which obviously is not going through to him at all. Like you can't have just bread. Like it's got a toast. Go and leave it down there. Anyway, so we used the countdown in the morning. So he will wait. And then as soon as I get to zero. And then he says press. And I say yes, you can press it now. And he'll press it. So that's been a huge change for him. And I can't wait to see what else will happen over the next few months. Because it's already been such a short time frame that we're seeing these changes. But I think I did mention to you and I'm getting a little bit off track, is we initially, when we had the diagnosis, we're like, okay, great. You know, we'll do an extra speech. Therapy session. We'll do another OT session. Thinking, oh, these are all helping. But they actually won't. No discredit to these people. But for a three year old to be attentive and sit through a 45 minute session. You know, whatever time you could just pick up. Because you're like, I want to get them there. They may be tired as heck. But you think, oh, they need this. And then you're flustered. They're flustered. No one wants to be there. And then you go away feeling really defeated. You're trying to implement what they've told you in that 45 minute session. And it's just too hard. [Amber] And it's a lot of pressure on the family. Yes. And it is. [Narelle] And it's also, I noted when Nic was going to that, it was very overwhelming for Nic. So there was too much information given too quickly. [Amber] Yes, 100%. And then it was all we'll change the approach. Because we've been doing this for six months. And you know, he's not picking up what we're putting down. And I'm like, well, I'm barely picking up what you're putting down in these sessions. You know, it's a lot. It's really hard and fast. And then it's disheartening. Because you know, you're doing it for six or 12 months. This little two, three-year-old. And you think that you're failing because you're like, okay, am I not trying hard enough at home. But then you're like, well, I'm not, you know, a therapist. So I'm not, this isn't me. [Narelle] But when you think about it. if, and, and you're a bit younger than me. But even like now, if I go and I've got to go to a webinar or something, is if everything's given at once, really rushed, you never, ever take it all in. You can't. So for a two or three-year-old child, how can they. If you as an adult wouldn't do it, that expectation on the child is quite huge. And that's where their communication and I look, I'm only speaking from my experience. Okay, not anyone else's. But my experience at that time was, Nic would just shut down. He'd say, I don't want to do this. [Amber] And that is similar to Hugo. Yes. [Narelle] Too much, too overwhelming. I once had a doctor say to me, and it was the best description I've heard of, Aspergers, which is probably similar to, I think it's at a similar level. Mind you, you wouldn't think it if you saw my Nic now, is he, it's like being in a room where everyone's talking at once, with the same level of intensity, the same tone of voice, and everyone's message is important. How are you going to get, be able to filter out what is important? Which versus what can be put aside and dealt with later. And I bet that was kind of the same. [Amber] 100%. Yeah. And that's hard. Like that's hard for their little mind. As well that they're so young, and they don't know any different as well. Which is hard. [Narelle] But for every step of their day, it's learning with smell, and touch and sound, and you know, words and sight and everything. So the messages they're getting from every part of them would be all-consuming. [Amber] Yes. And overwhelming. And it's anyone that they have these meltdowns. When Hugo's melting down, and he can't tell me, I'm thinking, okay, this is valid, because I'm feeling like I'm going to have a meltdown in a minute. And it's a lot of patience as well, which, being a parent, you have to be patient. But I feel like it's a whole new level of patience. Especially if it was probably just Hugo, it might feel a little bit different. But, you know, there's other children. that you have to worry about as well. So, yes, circling back to what he's doing at the moment, it's called Applied Behavior Analysis. Now, it's very intense, but in saying that we've seen nothing but great results so far. And I think that it suits Hugo, especially. And we're only speaking from our experience. Because they did a slow transition with him into the center. It's four days a week. It's nine to four. So, it's pretty hectic. He's got a team of four. He's got a behavior specialist, a speechie. And then two other little carer's who, they're all so lovely with him. And we're at a point now where this morning, for example, drop to go off. He put his backpack on, met one of his teachers, held her hand, walked in, turned around, waved at me halfway, huge, which is so different to the experience we had with him in mainstream daycare. Because we kept telling ourselves, oh, well, if you surround him with other children, you know, who essentially aren't autistic or whatever, it will help him. But I think it actually made him regress a little bit, because, you know, I would get the updates on the app from the daycare. And I'd be looking thinking, okay, where's Hugo? You know, he's not participating in any of the group time, which is so sad as a parent to think, okay. And they're just not equipped to cater for Hugo. I think. So you can, through NDIS, get an additional person at the daycare. You can apply for it. But that person, I found out, is not specific to Hugo. It's just extra hands in the room. Which I thought, I was like, okay, great, but that doesn't really give him that one-on-one that he needs. And we didn't know about this ABA therapy at all, until. It's the CEO of North Melbourne got us onto it. It's actually located right near Jed's work as well. And we were like, oh, no. This sounds a bit intense. I don't know if that's for Hugo. Like, that's our first take back and you do some research and you do find a few negative comments about this style of therapy, but they love Hugo. And they incorporate learning into play. And that's what Hugo needs. And it's all at his level, at his pace. Like, they don't push anything. He's happy to go there, which I think is a great sign. And it's goal setting specific to Hugo. So there's a lot of other children there. Obviously everyone's different, but it's all very specific to that child, which I think is so important. There's no one size fits all. [Narelle] And that's really interesting, isn't it? Because that's what it is with everyone. There is no one size fits all. The fact that they've worked out the best way to communicate with Hugo and they're using those techniques and those strategies. That's awesome stuff. Because I think that's what people forget, isn't it? Everyone's different. And one of the big things that, for me, when I took Nic anywhere, was I would get, you know, they would have meltdowns. And I think, just don't make assumption. You know, don't make assumptions. I mean, my boys used to be altar servers. And they nearly had a fight on the altar ene day, because they were rostered on together. Two autistic boys, rostered on together. Oh my gosh. And I'm sitting down in the congregation thinking, this is not going to be pretty? But, the priest worked it out. [Amber] They can work it out. No, not on the altar. Halfway through mass. No, no. The priest dealt with it. But, you know what? They're normal kids. And the moment people start making assumptions about anyone. And it's not just them. It could be assumptions about Lily or Freddie or you or your husband. About me and what I'm capable of. Not capable of. I think that harms our society straight off. [Amber] Yeah. It does. [Narelle] Yeah. I mean, I've got to admit, that's one of the things I like about going to your studio, is the notes are there for your staff to say, oops, here she comes. Don't touch the dog. Dog goes in the corner. Narelle will tell you what she can't do. But, you know, they ask the question. Yeah. And that is the best part. Just asking a question, isn't it? Or keep walking and leave it. [Amber] And I think that's it. I, I encourage questions because I've got friends who have three year olds. And, I've probably only got a small group of people that I could ever leave Hugo with. Just because we sort of, at that level of, it can be overwhelming for someone to think, okay, I don't know what he wants. And God bless Hugo. Freddie and Lily will speak on his behalf. Yes, you've mentioned that before. So that's always reassuring. But yeah, I think asking questions is needs to be encouraged more. [Narelle] So really what we're saying is communication will happen to Freddie, Hugo, for Freddie. Freddie's already got it. But Hugo, it will happen in Hugo's time. And it will happen the best way that works for Hugo. Which is exactly the same way as all of us, isn't it? [Amber] Yeah. Exactly right. We always say he's running his own race. And he'll get there. And he is such a good kid. Like he's really sweet. And I just, I can't believe, you know, all the time that we spend in therapy over the probably past 18 months forcing these ways on Hugo, thinking, okay, you know, he'll start speaking next month. You know, that's what I kept telling myself. Like, that's all I want. I thought, okay, I just want to be able to have a conversation with you. Because you'll see other three year olds having little conversations. And now I've sort of accepted. I'm like, okay, we will get there. May not, may not get there any time soon. But, we will. So. [Narelle] Amber, what's the takeaway? What's the message you want to give people out of all of this? So we've been discussing communication, which is obviously what I'm big about. And the fact I've only got four senses. Hugo's probably got about 1000 senses. Hugo's complete opposite to me. I know my son, Nic, has probably got 2000 senses. It's what it is. But we're saying everyone's different. You've only probably got five or six. So we're lacking really compared to Hugo. What's the message? What do you want to tell people about a child that is ASD level three? They're perfect people. [Amber] They are perfect. They're not any different to anyone else. They've just got a different skill set. I think kind would come to mind. I think, you know, when you see someone, whether it's like in my situation with a child having a breakdown, because they can't communicate. Don't stare. You know what I mean? Smile. Which I do often get. I'll get a smile. Or, you know, we've got our local petrol station that we go to. And Hugo has to go in there and get a hot wheels car nearly all the time. And they just expect it. And they don't expect any acknowledgement from Hugo. He'll just throw it up on the counter and wait for it to be paid for. But I think kindness. And I as a mum on sort of flipping it over. I think you've got a trust you gut as well. If you think, okay, something is not right, just keep pushing for an answer. And do your research as well? I think I didn't know half the stuff I know now. About autism and ways to help. And as I said at the start, no one sits you down and says, okay, this is your diagnosis. Here's the textbook on how we're going to help you with this. It's sort of got to figure it out. You've got to figure out how it works for Hugo. Yeah. [Narelle] And I think you're right. And I think people need to remember. Hugo communicates in Hugo's way. And Hugo's way is very different to mine. It's different to yours. And my son, Nic, it's different to the way my son Nic communicates. Different to the way the bloke at the petrol station that gets the hot wheel dumped on his counter. They're happy. You know, and it's all good. If there's no rudeness. And look, they're kids. They're going to be rude at times. Yes. Expect it. But communication is still possible. Differently. Think outside the square. I think the extra thing I would add Let the kids think outside the square. And you need to think outside the square yourself. Because if we don't think outside the square, we're the ones that are missing out? Not Hugo. Hugo's have a good old time. [Amber] No. I definitely agree with that. And it comes in all forms, too. I remember recently catching the flight. I was by myself. I saw this Mum, she had a little... She was by herself, had a baby in the carrier. And we're going through security. And, you know, she just gave me the look. And I said, to her. Would you like me to hold your baby so you can get your carrier back on. And she's like, thank you so much. And I just think like, we just had to look at each other. Mum, to Mum. And there is that communication of Okay, I can help you. So yeah. [Narelle] Thank Amber. [Amber] There are takeaways. [Narelle] Actually, I'll add one more. Just don't make assumptions. Never assume. [Amber] Never assume. As Jed says, You make an ass out of u and me. [Narelle] Bingo. [Amber] There's the takeaway point. [Narelle] And number two. Don't let Hugo watch how AFL. Or, well, actually, Akermanis., and Jonathan Brown and Michael Voss. There all [Amber] No longer. [Narelle] No longer. [Amber] No, it's Freddie we'll have to worry about. He will sit through a whole game. He's next level. So. [Narelle] Yep. Good luck. Totally different kids. They are. [Narelle] Thanks, Amber. Thanks so much for your time. And that's another episode of the Digital Access Show. So next week, we've gone. We've had a chat with Amber about her wonderful son, Hugo. Next week is this lovely, lovely lady called Laura Garcia. And Laura has a daughter. Wonderful daughter that's just started high school. And Eva has no sight. And Eva is a Harry Potter fan. And the way Eva and Laura have managed education, so that Eva is just excelling. And it's all about accessibility. And it's all about communication. So see you next time. Thanks for listening to us today. It's been a pleasure to have your company. If you really love what we're doing, and we hope you do, we hope you find the videos of interest, please like, subscribe and share to everyone and leave a Google review. See you next time. [Music]