Autism and AAC: Nicole Bateman chats with Laura Brown

In this episode of Conversations with a SEND Mum, Nicole Bateman sits down with Laura Brown, the voice behind Spinning World of Autism. Laura shares her family’s journey with her autistic son, Ethan, and their experiences navigating the world of AAC (Augmentative and Alternative Communication) to support his communication needs.

Key Highlights:

• Embracing AAC and Alternative Communication: Laura opens up about their decision to explore AAC as a way to give Ethan a way of communicating. She discusses the initial challenges, the learning curve, and the transformative impact it’s had on Ethan’s ability to communicate his needs, preferences, and feelings.
• The Journey to Specialist School: Laura shares the emotional highs and lows of securing a specialist school placement for Ethan. She reflects on the advocacy required, the barriers they faced, and the relief that came with finding a school where Ethan can thrive. Her story is a testament to the power of perseverance and the importance of finding the right educational fit for each child.
• Navigating the Ups and Downs of Parenting: Throughout the conversation, Laura and Nicole dive into the realities of parenting a neurodivergent child. They chat about celebrating the small wins, embracing differences, and the importance of a supportive community.

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Check out our Season 1 and 2 sponsor The Super Sensory Squad who support kids in understanding the eight sensory systems and emotional regulation using their penguin squad at: www.thesupersensorysquad.com and www.instagram.com/thesupersensorysquad

Transcript

2:08

Hello, welcome to Conversations with an SEND Mum. I am your host, Nicole Bateman, and I am joined this week by Laura Brown, who is an amazing mum and shares lots of really, really important things on Spinning World of Autism on Instagram. So hello, Laura. Hello, thanks so much for having me on. That's all right. So first of all can you just explain a little bit about your connection to the SEND community, please? Yeah, of course. Yeah. And so my son, Ethan, he's five in October and he's autistic. He was diagnosed a couple of years ago now. So we've got a few things kind of under our belt a little bit now. He's non speaking but he communicates. in so many wonderful ways. Like Makaton, like his ASE and also just going to get whatever he wants for the thing. He's always been so independent, you know, he'll find something that's glass shaped and go to the tap and make himself a drink. Ethan is sort of considered high needs. And he's just started at a specialist school. Also just sort of being thrown into this whole new world has given me a real sort of passion for inclusion and accessibility, and I'm trying to do, be a kind of small part of making a sort of big change. And I've been interviewed a few times kind of on BBC and about our fight for the, for a specialist school. And I'm currently working with the police to share some of my thoughts and worries and kind of what training they need. So yeah, it's kind of re reawoken a sort of a real fight in me just like for Ethan, but also just for the wider community. I love that. I love that. It's so great, isn't it? Because, you have that experience. You have to. Deep dive into things that you didn't, didn't know about previously, however many years ago. But then that, often brings not only that fight for your own child, but to help others too. So I love that. Yeah. And I I've also created, and I need to have a bit of a, another drive, another push for them, but created a leaflet. Sharing just kind of all I wished I knew when Ethan was diagnosed because it's something I kind of often say, like we weren't even given a leaflet saying like, what is autism? nothing. So on this, I share, you know a few things kind of from our personal experience. A few sort of books to read a few things that when they're in the right headspace to look into. So kind of look into DLA and the blue badge and McAtoll and just try to get it down where, and they probably won't read it on the day, but my dream is for it to be in kind of every pediatrician's draw. So, you know, you probably don't want to read this instantly, but look at this when you can and hopefully we'll just let people be a little sort of step ahead. Yeah, it's so important. Understanding and gaining that knowledge is key, isn't it? For the whole of society. Yeah. For sure. So I want to chat and focus on a little bit about the different ways of communicating that you've learnt and that Ethan's learnt. Can you share a little bit more about that? So yeah, so Ethan is non speaking and you know, from a baby sort of thing, he never babbled, you know, we would hear sort of, I would say newborn babies, but probably not, but you hear newborn babies make a noise or say something, I think I've never heard that sound kind of come out of Ethan at all and so obviously we've had kind of speech therapy, a little bit But, you know, Ethan is non speaking, so we've looked into kind of different ways to help him communicate. And he now is really great at using Mekton and using an AAC device. And I just want to share that to people listening. So Ethan lost the ability to point and to laugh, like he had to sort of autism regression sorry, to point and to wave. So he lost gestures. So now if kind of future me would say in the future, he'd be great at Makaton and he'd be able to point to an AAC, I would have sort of thought potentially that wasn't going to happen. But actually by doing it and by kind of really embracing. And I went on a couple of courses and just kind of doing it at home. It's become something that has been so important for us. And his first time that he learned was more and actually more. You can use pretty much everything. It's like more food, more, can you play that again? Can you do that again? And now we can sort of say to him, like, if we're pushing him on the swing. We can say, you know, give him our hands and say, do you want more? Are you finished? And he'll do which one. And, and like, that was huge for us because, you know, we've, we got pretty good at being a detective with Ethan and, you know, reading his needs, but for him to actually be able to tell us. That he wants more finished, you know, it is huge like for him but also for us. And then, yeah, he also uses an AAC device. And this is something actually that we tried a couple of years ago. We did what lots of parents do it to think is when it's sort of autism awareness week, I think in sort of April and October, lots of the apps are half price. So we kind of bought one and kind of tried, but this was a couple of years ago when we were in a completely different place, sort of mentally, a completely different place. In terms of just not, using it, it's like learning a new language. You wouldn't learn a new language when you were kind of on your knees trying to fight for so we introduced it sort of five or six months ago. And Ethan has just been an absolute sort of whiz on it. And he is a whiz with like YouTube you watch him on YouTube and I didn't even know you could do this. Yeah. And he's just been incredible with his AOC and, you know, kind of things like being able to request that he, you know, he's thirsty and he needs a drink. But also he's been able to tell us, where it hurts on his body. He's been able to hit medicine We always say mummy kiss it better when he hurts himself so he can press mummy kiss it better and we know he's in pain and So like it is just been Incredible for him. So we're just kind of really embracing that and I shared a post on my Instagram because I'm always kind of asked kind of what? One of the top tips really with AAC. Yeah, I think it is hugely embracing it because there's a lot of myths that fly around, like, it will stop him talking. You have to try every other communication thing first, and they all have to fail before you do it. It's just ridiculous. Yeah. But we just completely embraced it. and accepted that this could be Ethan's voice, sort of forever. And like, it's got every word you ever need. And that's the idea, obviously if you can communicate verbally, you can say whatever you want. So Ethan needs to be able to say whatever he wants. So if he's using it, you know, as an 18 year old, he can, he can write a novel on it, I always say, or he can do literally anything on it. So we've just kind of fully embraced it and it's just sort of really paying off. And it helps, Ethan, obviously, completely understandably, would get a bit frustrated and he might walk past us and scratch us or bite us or something. And actually he just needs a water. He needs his drink. And now he can go up to his AAC and press water and he'll look at us and kind of, you know, the look. Yeah. You get the water. And like, that's, yeah. That's huge. It's game changing, isn't it? Yeah. That's game changer. Yeah. Yeah. That's amazing. And so, so for anyone who's a bit anxious about whether to, to use it, you would say go for it. Embrace it. Yeah. And then you can't kind of start too early. You know, cause to start off with your modeling, so your child might not touch it for months. Yeah. Yeah. Ethan has. taken to it sort of quite quickly, I think, because he's such a whiz on, the phone, but your child might not touch it. You have to be modeling. And also what we've done is model in kind of the good, but we also model in the sort of bad and sad and painful. So for example we've got a cat and Ethan absolutely adores Otis, our cat. But our cat lived like a queen before Ethan was born. And I think Ethan's bored and she's like, who's this? Sort of kids and cats aren't a great mix anyway, but I think kids and a sensory seeking autistic child sort of, occasionally Otis will scratch him. And she kind of, you can see her trying to be good, trying to be good, but eventually she just gives him a little scratch on the hand and he is, I don't think it hurts that much, but he's devastated because it's like his best friend, sort of. So we use the ASA and we say, Oh, Otis and we hit Otis and we use body parts and say it's his hand. And mummy kiss it better and kind of use all of that because actually. Is as important or you can say sort of more important for him to be able to tell us the sad and the bad and the pain things. So yeah, we've just kind of really thrown ourself into it, which has really paid off. amazing. And if people listening have any further questions about. those different forms of communication, then definitely go to Laura's Instagram because, yeah, she, I'm sure she's happy to Yeah, I love, I love talking about ASE. Yeah, so yeah, very happy to help. And actually I do have a post pinned to my profile actually about how we got started and cause I think there's also a misconception. You need to pay thousands of pounds and get this. And actually Ethan's mum gave us an old iPad that she didn't use. We downloaded an app. We use TD snap, which is like 49 pounds. So actually, it doesn't have to be this huge kind of scary expense. Yeah, absolutely. And so I just want to home in on, because obviously you've been, you've been on this journey and it's, it's had ups and downs and so tell us where you are now and where you then came from back however many years ago. Yeah. Yeah. So where we are now is a really positive, great place where actually the word sort of consistency. is just in our life a little bit now. So we've never really had consistent child care for Ethan because he mainstreamed nursery, couldn't meet his needs. He's had various issues with tonsillitis and having his tonsils out and everything else. So we've never really had consistency in that in childcare, which has been difficult, but we're now also in a place where actually. The fact that we've learned about Makaton, it's paying off and Ethan's using Makaton beautifully. We're learning about AOC and obviously it's a daily thing, but we're seeing the successes of it. We know how to help Ethan regulate our garage, which does a total dumping ground, as I think probably lots of people's garages. Yeah. So we've converted that into a sensory room for Ethan. Ah, amazing. So, and we're quite lucky that we kind of have a big room here, which is sort of our lounge kitchen and we can open the doors and there's a door now going into the garage. So we can kind of sit here working or doing whatever. And he's living on his trampoline or whatever. But We've, yeah, we've lived it for a few years now. So we have some kind of skills on under our belt and we understand Ethan and we've now got Ethan into a specialist school. So and as I said before, you know, I'm not naive enough to think that this is it now. We can just sit back and relax, but actually we're in a real place where we. I understand Ethan, we know kind of what our life is and, and we kind of love our life. And, you know, I wouldn't change anything about Ethan and anything about us sort of day to day. Yeah, I think it's important for us all because, everyone listening will be in a different place right now. They might be full on in, in the trenches. Like I know that both of us were. Earlier this year and et cetera, just really at that point where mentally you, oh, you've been fighting so long or then other times you can be in this consistent place for a bit. And, and you know, yes, there may be challenges ahead, but It is a little bit of a relief sometimes, isn't it? When you're like, ah, my son has been seizure free for the longest time that he's ever been. 12 weeks. I'm like, ah, okay. Yeah. This is, I know that that's not over and that he probably will have some more seizures, but it's just. Yeah. When you get certain things in place, the support there lessens anxiety means that everyone can respond and react in different ways. Yeah, we have to let ourself feel that and enjoy that. We fight so hard for so many things, it can be so tempting to always be looking for the next challenge and the next thing and like, that's how my brain works. Yeah. But. We can just enjoy it and actually we're trying to make a real effort just to slow down a little bit and just to like breathe a bit because you don't and like I've probably sort of been metaphorically holding my breath for years and actually just need to. Just slow down and just breathe properly because of us, because we matter too, you know, our health matters and actually without that, you know, we can't fight and like everything Ethan has today and does today is as a result of me and my partner fighting for it. And that's sort of a fact. But you have to. be able to do that. So you do have to look after yourself a bit as well. Yeah. So what about the people listening who are in those, that trenches in the fighting bit, what would you, what advice would you give to them? Yeah. Yeah. So first of all, Well, see, as you said, like, I have been in the trenches. And actually it was only February of this year when, we then did find out Ethan had gone into a specialist school, but the fight to that took everything we had mentally, physically you know, would've taken financially if we would've had to go to tribunal and do all of that. But, you know, and I sort of had kind of family and stuff, you know, you have to look after yourself, you have to whatever, but the state of the system, I, and this is bad to say almost, but you can't, if you need to fight to the level you need to fight to get your child into a specialist school, you have to go all in. So yeah, we went all in and fought with everything we had and that kind of took us to our knees that, you know, I don't know, you know, if Ethan hadn't got into Specialist School, I don't know how much fight we had in us and sort of what we would have done. And I've shared on my Instagram a few times about having this sort of fantasy of, Buying a house at the top of a very steep hill and just living in there. And I've had hundreds of people be like, can we live on that hill with you? I thought it was a bit of a unique thing for me, but you know, it's not just that sort of escaping and just living in our own little happy bubble. Before the fight say I had all the things of like processing Ethan's diagnosis, realizing he was autistic, but then not having any support. And, at times I'd been in a place where I'd hear someone in a toddler and coffee one, shout mama. And it would, you know, I'd have, I'd cry, you know, I'd have a little cry over my coffee and, everything was a, a trigger sort of at one point but I hugely believe in letting yourself sort of feel all these feelings. And like me and my partners, we run our own business. We both work full time. Ethan's barely had childcare. Like he's pretty much since he's born been at home with us. And so sometimes we just look at each, we used to look at each other and be like, what on earth are we trying to do? Like, we can't do this and the sort of why us, why me, why Ethan and just all of those things. But I think actually you, you need to have that. And have that happen and say the questions and the feelings that you keep hidden. So you can process them and so you can heal from them. Because I think otherwise you can just go down this whole long line, just holding onto these huge things and that's bad for you mentally, sort of, and physically, like I think it's okay, but just try not to sort of set up camp there. Temporarily, kind of. And temporarily can be, you know, I was probably in that for three years or something like it. It's hard. Yeah. And I have a, have therapy and see her kind of every fortnight, every three weeks or so, like, you know, it's an ongoing kind of process. Yeah. But you know, you at, at some point you then have to, yeah. Feel your feelings, but then try and start to kind of, to heal and to just enjoy your child in front of you and enjoy, and there's so many aspects of our life in terms of, you know, not following the rules and all the shoulds and you should do this. And actually we love that. And like, we love that kind of way of way of life and how cool that we've got sensory room and that Ethan can spin on his little seat at a hundred miles per hour. Yeah. Love it. And. Yeah. Seeing the light. Yeah. Yeah. It's so important, isn't it? Because that's what will get you through those harder times. You know, seeing that there are. And that's why it's important, on this podcast, on Instagram, wherever, sharing both the challenges and the challenging times, but also the wins and, where you are now. It's important to share, to be like, yeah, you guys in listening can also, get to that point. And the, the journey is not linear. It's, it's up and down. Yeah. Yeah. And I've shared a few things and like, I think when I first sort of shared them, I probably felt a bit nervous about it in terms of whether it's kind of too positive or whatever, but you know, this is our life and actually, I've kind of shared a few things that post is sort of you know, 10 things that used to. be a trigger of mine and now aren't. And actually I ever had people saying they've got there too, or actually it was really great to hear that they might get to that place. Yeah. So Ethan often he uses like a chew buddy that, so he's chewing on it. Often he if we're walking far distances, he has to be in his pram. Who often might need his phone and so at times I'm like, I don't, I used to be like, I don't know if I want him to have a Tube Buddy, be in his phone and have his spam at the zoo. But now, like, I honestly couldn't care less about people looking like Ethan can have whatever he needs and To stay regulated, yeah. Yeah. Yeah, I think, I think that's hard and I think that is that you learn to Not, even though it depends on different days, I still, sometimes if people are looking in certain ways and they are like, Oh no, you're getting judged, but then on other days, you're like, actually, no, like, this is what is needed for my child. I know what triggers my child. I know what regulates my child. And these are the things that we need to do to ensure that they're safe, secure, and having a good time rather than. Melting down. So, and as you said, it's Lindy and a lot, if you haven't slept very well for the week, if you're calling, if you've had a difficult morning, you know, you react differently to things, but you know, it, it changes. And I think also with kind of people looking and staring if I see another family out and their child has got a sunflower lawn yard or like, Ooh, there's You know, so I might be looking sometimes and they might not instantly, like if Ethan doesn't have his tumor, they might not recognize him as autistic. So they might think I'm staring or whatever. So I think, yeah. And again, when you're in the trenches, when your mental health is low, you're always going to think the worst and that's kind of fair enough. But just sort of thinking, actually, they could just be looking. They could work in a specialist school. Their cousin could be autistic. Like you never know. Yeah. Yeah. It could be a loving look. I try and like, if I do look, it's more like a, I get it, a kind of, you know, one of those nods of like, yeah, like, I'm a safe person to, if you need, if you need anything. Sometimes I'm like, should I be like, I've got a fidget toy in my bag, or do you want this? Do you need this? And obviously, and we've been quite lucky actually, we haven't had too many, you hear some people have comments said to them and questions and stuff, but, but we had something that I'll always remember. And it was when we didn't, we knew Ethan was autistic, but he hadn't been diagnosed. And I think we were in coffee one sort of sat outside and then as this man left, he was like, well, he's so well behaved. I haven't had a word out of him. And that, obviously he's completely not speaking, we just kind of laughed and nodded. And now I don't know whether I'd say something, or hopefully they would hear him now, because they'd hear his AAC. Yeah. But yeah, obviously depending on what kind of day you're having, that could, that could sort of send you on a huge spiral. Yeah, definitely. Some people just have to say things, don't they? Yeah. Yeah, exactly. Exactly. So just to finish, last word of encouragement to. Anyone listening? What would you say? Yeah, I think mainly just sort of never sort of setting up camp anyway, as I said, so setting up camp in a kind of really horrendous place and just kind of trying to kind of move forward when you can But not kind of think too far ahead. Like, I think I've done the thing, which I think lots of families in our position of being where you, you look at your child at two and you think about the future and you, whatever. And actually, Ethan is a totally, totally different child to where he was then. And things like using gestures. And now he uses gestures to do that. There's always hope. And there is. Always kind of new things you can do so kind of just to kind of keep learning, kind of keep growing, keep moving. But whilst also just enjoying the beautiful child you've you've got in front of you. Definitely. That's great. Thank you so much, Laura. So the best place to connect with you will be yeah, probably on Instagram. Yeah. Really hard to always respond to my messages and to help. And, I sometimes get people say, Oh, sorry for messaging or whatever. Like I love kind of helping especially if it's AAC related. Excellent. So yeah, any AAC questions, especially go to Laura. Absolutely. Thank you so much for chatting with me. And yeah, thank you for listening. I will see you next week on Wednesday, next Wednesday for our next episode of conversations with an SEND mum. Have a lovely week.