S4: E4: Tourette's and Autism: Nicole Bateman chats with Scott

In this episode of Conversations with a SEND Mum, Nicole chats with Scott, owner of Phoenix Ashes and Co, about a journey many families will recognise, years of waiting for a diagnosis while navigating life, learning, and misconceptions along the way.

Scott shares openly about his son, who is close to receiving a diagnosis of Tourette’s and Autism after a four-year wait. They talk about the importance of tools for regulation, what they’ve both learnt from their children, and how understanding their kids’ brains has been life-changing.

That understanding didn’t just help Scott support his children. It also helped him recognise his own neurodivergence, sparking reflection that Nicole resonates with deeply, having received her own ADHD diagnosis later in life.

This is a conversation that goes beyond the stereotypes, it’s about empathy, practical strategies, and the power of connection between parent and child.

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Transcript

2:09

Hello and welcome to Conversations with Ascend Mom, with me as your host, Nicole Bateman. And today I am joined by Scott from Phoenix Ashes and Co. So Scott, welcome. Thank you, uh, and enjoy being on here. Yeah, I, I'm looking forward to our chat. So, first of all, Scott, can you tell me what is your connection to the SEND or NEUROT community, please? My connection is my, amazing son who's just turned eight and is on the last part of his journey to be diagnosed with autism and Tourette. So around Tourettes there's often quite a few myths and stereotypes and things like that, so. Can you just share a bit of the realities please? Yeah, it's, I think Tourette's is very much like autism. It's, it's a vast spectrum, right, from what you see on TV and in films with the Tourettes, everybody associates, it's weird random swearing and, and things along those lines. But my son, especially with his Tourettes, it's more when he is really heightened or overstimulated. It's, it's mainly involuntary noises, smacking his lips, tutting, and clicking just, just everything. But he's not in control of it. Yeah. And it's, it's learning what triggers him, what sets him off, and not making a show of it. I think that's the biggest thing with it. Like all, all kind of, uh, neuro divergence. It's, it's not making it, it's different at all. Yeah, yeah. Absolutely. And that's, I think there's, there's similarities there in the fact. Of our lived experience with trying to lessen triggers for my son's seizures. For example, as a parent, you are investigating, okay, what do we need to do to lower those triggers to help them in their day-to-day life? What kind of things do you find even, I mean, you said overstimulation. What kind of other things trigger his definitely sleep or lack of sleep and through his autism is, it does quite affect him the following day, but it's that whole thing. I think he's constantly teaching me. Yeah, and I'm constantly learning about what works for him, what doesn't work for him, and the whole connection between us as a family unit Yeah. And the outside world and about how we can only control X amount. Yeah. And it's then learning it when the things we can control, what do we do then? Yeah. And that, that's such a big lesson, isn't it? Such Definitely because you, you just wanna, well, I dunno about you, but I just wanna be like, I wanna make sure that everyone gets it, understands that he's not gonna have stress to trigger this. He is not gonna have all of this. But you realize you can't, you can only, like you said, deal with what you can control within your family unit and all of those things, and then equip them with different strategies to lower stress and, and all of those things. But you can't stop. You can't stop stressful together, can you? No. And and for me that, that, that's my biggest lesson that I've learned Yeah. Is you can't control everything and things are are gonna go awry. They're not gonna go to plan. It is that exactly that equipping him, not us.'cause we're the adults. He's equipping him with the tools to try and keep relatively level for him. So he still enjoys and doesn't get upset in any way. Yeah. Absolutely. So when did, going back to the beginning, I suppose, when did you notice that, maybe some ticks or anything like that? Yeah, his, his, his ticks and stimming would, would be when he is, initially we noticed it when he was concentrating. Okay. Really how perfect. Concentrating on things like putting cars in a row when he was a toddler or having things a certain way. And it had to be that way. And if we cleared up. Yeah, which every parent does at the end of the day. They, they clear stuff away and then that reaction then, and then when he couldn't understand why we were doing it, that's when we noticed he would click or tut and or mannerisms with his hands, especially clicking his fingers initially. And it, it was Oh, oh. That was like, okay, there might be something in that. Yeah. And then that's when the journey started when he was probably about three and a half through the, the health different departments of which there are hundreds it seems like. Yeah. Yeah. And so now you're saying that he, he should hopefully receive both diagnosis soon and he's eight. Yeah, he's eight. Yeah. We're, we're just shy of four years. Wow. From initial appointment to where we are now, it's actually next month. We've got what we hope is our final appointment. We haven't been told it is. We'll see. We're a lot, we're a lot better equipped us and him and nearly everybody around him. Yeah. Every day is different. Yeah. Absolutely. And how have you found that, you know, have you had to advocate to be seen,'cause it's taken four years or has it been okay? Yeah, I mean, everybody listen to this as a send parent will know. Yeah. You've gots and doors, you've got, you've gotta punch some tables. You do. Yeah. And you really have. Got a shout from the rooftops that you need help and your child needs to help more than anybody. Yeah. And it's that help. And unfortunately with everything, it's all stems from lack of money. Yeah, yeah. Absolutely. So that support is needed. Unfortunately, funding is Yeah. Is tricky. Yeah. And, and that, and that delay for me when they're, when there're three, four, when you first get signs up to, up to now, which, which most children of, of Neurodivergence need. Is their most formative years, which is when they need the most help anyway, and it's now, they're now having to wait till they're almost thing about senior school when all the things they've learned and all the patterns should already be in place. Yeah. So does he get any like support at school? Does he need that or, yeah, we, we are extremely lucky that his school is fantastic. Oh, that's great. They have a great send department and they have a real understanding of trying to work to him by making him work to them. And I think that's massive. And unfortunately they are. Not the norm. No. In that regard, most most schools don't have the budget or the willingness to sort of bend over backwards to try and help the child. Yeah, but that's amazing. You've got one and you fact you've had that. Yeah. Because otherwise I suppose the, the four years would've been even trickier. Yeah, it would've been extremely tough. The, the score brilliant. We're really lucky. Yeah. Yeah. Oh, that's so good. And'cause obviously there's a lot of co-occurrence of different neuro divergent conditions with the autism. So you, you know, you mentioned obviously stimming and then ticks, like was it for some parents for example, they may be like, well, what's the difference between. The stimming and the ticks and is there Yeah. For me, I mean, and it's, it's just my opinion. Yeah. It, it's, it's the physical nature of it. Yeah. Whereas for me, his stimming is, is more about his vocalization of stuff. Okay. And, and the repetition of, of that. Whereas the tics for me is, is, is the more nonverbal side of it. I may be completely wrong, but that's how I distinguish between the two with him. Yeah, yeah, absolutely. And everyone, everyone has different, like you said, it's, there's a whole wide variety and sometimes in the media, one type of, like you said, the swearing, uncontrollable swearing. When people think of Tourettes, that's probably often what is thought about. That's do too. Yeah. Yeah. Absolutely. So what. What is it that looking forward, you, you wish that people understood in society in general to support your son? Yeah. I, I, I think it's, it is a thing with society as a whole. Don't be quick to judge. I, I was that person. Um, before I had my son, and this is why he's incredible to, to teach me to be a better person, is you look at a child having a, a, an ab dab, a sub description or having a bit of a melt bang, and you immediately associate it with him being an, not very nice child. Yeah. I mean, a ill behaved, but it's not, and it's, it's learning that you don't know what's going on, so don't judge. And have that acceptance that everybody's different whether, whether neuro diversion or not. Everybody's different and everybody deals with situations. Discipline school differently. Yeah, absolutely. I think that's important. And, and it's amazing that you've seen that. You, you, you were that person who would Yeah. Look and be like, and I think a lot of us, if we haven't got the lived experience of our children, then we can easily look and think, oh, they're just being naughty or whatever. But actually. The, the difference there between the meltdowns of the, the overstimulation in a supermarket or all of those things that can happen because of the sensory stimulation as well. For some that we definitely need to be kinder as a society, don't we? Less judgey. Absolutely. Yeah, absolutely. So. And about yourself as a, a dad. So you've, you've said obviously he's taught you lots. How have you Oh, he's, he's taught me more than I could ever I learned in the other 40 years before we come around. Yeah. I've, I've learned more, more in this period of time than anything. And he's made me a better personal around. Yeah. That's amazing. And I think, yeah, we, they're great teachers, aren't they kids? They're best because they're blunt. They, they, they wouldn't, they wouldn't mess around with what they're saying. No, exactly. Definitely. And so I know that you, for example, with Phoenix and Ashes and Co. You have a mission and the impact of your son has that. Impacted what you wanna do. Well, tell us a little bit about it. Yeah. I, I, is, is that the biggest lesson he's taught me is that don't take things for granted. You, you are only on this planet for a next period of time. Yeah. If you are lucky it's 70, 80 years. I mean, it, it could, could be a lot less, but. When, and it, and it sort of coincided with, with COVID and, and him starting on his journey with his with his autism diagnosis. I wanted to leave here and leave the place better than when I, when I arrived. Yeah. And that was a lot of the premise about Phoenix as is, was I wanted to better clothing, longer lasting, more inclusive, more understanding. Yeah. And I try to encompass that with the whole thing. I hope, I hope it works. I hope it, it, it gets across that message. Yeah. But you don't have to be a certain way to achieve being good or being nice, whether it be to a person or whether it be to the environment. Yeah, absolutely. That's so good. I think there's a lot, a lot of parents that I speak to, they are, they have that impact that you, sometimes when you parent before you become a parent, you think it's gonna go this way and this is what's gonna happen. They're always gonna eat their food, they're always gonna do this and this. But then it changes, doesn't it? Yeah. It that definitely. Yeah. The, the whole thing, pre parent. I think everybody thinks they know exactly how it's gonna happen and what's gonna happen as soon as that child is born. Throw all those thoughts away. Start again, have a blank page. And even more so when you have a child. Yeah. With a send needs, I think no matter if you have a close relative with similar conditions, doesn't matter. Yeah. What works for them won't work for you. And also, and he's, he's, he's also taught me this. Don't sit, sit in a room afterwards and beat yourself up about decisions or what you think you've done wrong. You won't get it right all the time. In fact, you'll get it wrong more often. You'll get it right, but it's learning, shaping and helping them go through whatever they're going through. Yeah, absolutely. And I think that's is what people need to hear because sometimes I, you put so much pressure on yourself because I dunno about you, but I find myself a lot in that kind of dysregulated. My nervous system is really dysregulated. I'm in fight mode. I'm like, right, okay, I've gotta advocate. To the medical professionals, I've gotta advocate to school, I've gotta advocate to general society and stick up for my son. So I'm in that state. And my mental health, for example, through this journey of fighting to get that to port has, has dipped many times. But do, do you find that now you know about that and how, how you, you've got systems in place for yourself to be able to regulate yourself if you like, so you are unable to help. Child because you are a more even kill. And that that's what, that's what meant what I said earlier. You're learning every day. Yeah. Every single day you're, you're learning and you're getting on and everything else. That, and to be fair, I think this is, this is the first time I'm gonna, I'm gonna say this out loud. I've just been diagnosed myself and Yeah, I'm autistic and I've got adhd and it's, he's taught me to recognize my. Patterns and, yeah, I've, I'm, I'm off to the doctor. Fun enough next month as well. Yeah. Where I'm gonna get my official diagnosis, although I've, I've done all the tests and everything else. Yeah. Yeah. Well, thank you. Thanks for sharing that. I am, I'm a fellow late diagnosed A DHD, so it's, it's very interesting. It, I think for sure. Trying to understand their brain, our children's brains. That opens your eyes, doesn't it? To yours? It does. Huge. Yeah. Yeah. And, and it's just, it's amazing. And it's that discovery and it's that understanding, like you said, if you are trying to help them to find ways to regulate themselves and understand their brain, and then you find ways to regulate your own self and understand your brain. And, and, and that is where, where the, the dual learning comes from. They're learning from you. Yeah. You're learning from them every time. Yeah, definitely. And it's just a, yeah, it's just amazing and, and yeah. Thank you. Thank you for sharing that with us because so many parents I think are similar, have gone on a similar path, have have discovered different things about themselves that we didn't know when we were younger. So what we've, people listening right now, and maybe they're in a situation where. They're in that start of it, the thick of it. The people aren't listening to their advocation, they're not doing that. What kind of tips or bits of hope would you share with them the next time you have a um, a meeting or a health appointment? Don't put too much pressure on that particular appointment. Yeah. It's just the first step or a step along this journey. You dunno how long this journey is gonna end. So last thing you wanna do is start too quick or start too hard because you will wipe yourself out. And it's, it's accepting that it is gonna be, that it's gonna be a long road. And I think by not getting overly emotional, especially early, early on, you will be able to regulate yourself. Like, like, like we've had ups and downs. Ups and downs. Yeah. I think the more you try and keep even. Been more successful the more even I've been, especially the last 18 months or so, the more results we're getting. Yeah, so it is, it's like that, it's the cheesy saying of, of like, put your, put your own oxygen mask on first. But it's actually really true, isn't it? It's, yeah, like, it's so true. It's like so many times over the, the last four or five years where. I've just been fighting so hard and we are at points where I'm just crying at my, at the end of my bed and all of those things because I'm like, ah, what, who's gonna help me and who's gonna help my son? And, but actually working through, trying to understand, and I dunno about you, but now I understand that I have a DHD. There's so many things that make sense for me to Did you find the whole diagnosis quite freeing? Yeah. In, in everything. And, and now, ah, I do understand that. And everything else that goes with it. Yeah. And because you are free, yeah. You're now able to take more stuff in for your son and for hundreds and probably thousands of other people you help with all what you do. Yeah, it's, it's, it's amazing. Yeah. It, it absolutely is. And, and something that I struggle with is like RSD rejection, sensitivity dysphoria, which is very much linked in with A DHD and things like that. And now I know that my brain is more wired to receive things, even if it's perceived rejection, not actual rejection, to take it, it can now. Because I'm not like, oh, I'm just making it up. I felt, when I got that a DH ADHD diagnosis, I was like, I'm not making it up. Like I'm not, like that's how I felt. I'm not making it up. And now I can tell myself, okay, is that actually rejection? Like, is it a perceived rejection? Sometimes it is rejection, but I can logically say, I'm gonna feel this more than maybe others, and so therefore I can kind of, I don't know. I can just explain it to myself a bit more. Now I know it's, yeah. And to be fun as well because you are aware of that and you're, you're, you own, you're in that neuro divergence world. Yeah. You, you do understand it more. So you're able to communicate that more the other way. Yes. It, it's an extra tool you've got now. Yeah. And, and that, that, that's how, how I'm treating my, my diagnosis and then else, because I understand myself, I'm able to understand him and we're doing that together. We're helping each other. Yeah. Yeah, definitely. And that's so great. That is so great. Partnering along together, understanding your brains and, and, and trying to, to get others as well to, to understand too, I think is is key.'cause I mean, it would be amazing if society, everyone in society came to that point of understanding that everyone had different brains and processes, things in different ways, responds, communicates in different ways. Um, exactly. Yeah. Um, I, I'm seeing more of it. Yeah. Society, especially around the younger age groups. Yeah. When, when, when you're out and about and if there is a child in a, in a supermarket having a bit of a meltdown Yeah. You can see almost other moms or, uh, other families that perhaps being in or aware of it almost protecting them. Yeah. Almost. I, I, I've seen it twice now. Where, where, uh, mums have almost shut off the oil. Yeah. So, so the child and a mom can Yeah. Reregulate. That's great. And, and, and get back on it. And it, it's, it's amazing to watch. And, and I think, well, I hope that in time that just escalates up further and gets better.'cause I think if it was 10, 15 years ago is people fought very differently. Yeah. It sounds mad to say because it's not 34 years ago, it's only, it's it's probably less than 10 even like far. Yeah. Yeah, absolutely. It's definitely going in the right direction, which is good. Yeah. And thank you for sharing your input and your story and your son, because that adds to that understanding. It's, it's great. And I, I wouldn't change him for the world and nothing about him because when he loves, he loves hard. Yeah. And, and that is the best feeling in the world. Yeah. Yeah. My son does the same as well. I, I'm like, I love it. I love his hug. He loves hugs. And I'm like, as an 8-year-old boy, some 8-year-old boys might not be in that stage of wanting all that love and hugs. Yeah. But I think he'll continue that way throughout his, well, his whole life, I think. Yeah. Because, because that's our sense sensory need. Yeah. Especially for, for when you wanna deregulate. Yeah. That's, that's my, my son's thing. When he wants to have a reset. Yeah. That's it. And he wants be squeezed, not just hug, he wants to be proper squeeze. Yeah. I think that's, that's a massive thing. Yeah. Yeah. That, that again, my son seeks out, like all that proprioceptive input, that big squeezes like, yeah. Pushing, pulling, carrying, and yeah. It's amazing when they know those tools and they have those tools and they know, okay, I need a big squeeze, then that equips them to advocate for their own needs when we are not around. Yeah. E exactly. It's weird. I had a, had a conversation with my dad a couple days back on'cause he's, he's old school. He is, he's well in his centers name and he's never been around it. Although I have a physically disabled brother. Yeah. He's never been around the, the neurodivergence sort of stuff. Yeah. I tried to explain it to him. That claim will always need more tools. Yeah. Like us men, we love, we love going to b and q and even though we got a, a garage full of tools, we'll always look for more. Yeah. And, and my son will, will be exactly the same. He will always need more tools in his toolbox to help him get through life. Yeah. And I'll happily take him on that journey. Yeah. Yeah. I love that analogy of like, as you're right, you're absolutely right and yeah, you're, you are there right by, right beside him, cheering him along. Which is, which is what us as parents, it's, yeah, it is our job, but we do get so much more outta it. Yeah. Oh, definitely, definitely. I love it. I love it. Thank you so much, Scott, for chatting with me. It's been really great to hear, just hear it all. Where can people connect with you if they want to connect further? Um, Phoenix Ash is in code, is on all, all social media platforms and stuff like that. Before we go, I, I do wanna say that I really wanna emphasize to everybody, give yourself a break. Yeah. Don't be too hard on yourself. It's massively difficult. At a better, at times. Don't be too hard on yourself. No, you're, yeah, you're absolutely right. There's a great message to finish on. Thank you, Scott. No problem. Thank you. And remember that on a Wednesday there's a new episode of Conversations with Ascend Mom, and you can catch up on over 40 episodes on Spotify and Apple and other podcast streaming platforms. Please do leave a review, rate it and share it'cause that helps this podcast reach more people to spread that awareness. See you next week.