Hello, this is Anna Kennedy, and we're talking all things autism, and we have some exciting news to share for Women's Radio Station. We were both at the most dedicated Women's Mental Health and Wellbeing Media Platform 2022 by the Greater London Enterprise Awards, and it's the second year. So, woohoo to us! I have been part of Women's Radio Station since it started, so I really do remember the first meeting that we had. I think it was about 35 of us, all raring to go, so I'm still going strong, talking all things autism, and I love speaking to my guests. Also, some other exciting news, our charity Anna Kennedy Online has actually won an award for the National Learning Disabilities and Autism Awards 2022 at Birmingham. So, I was supposed to be there, but I couldn't be there, so I'm sad to say that I wasn't there, but I sent the award, and guess what, it broke in the post! So, they're going to send us another one, but it was the Jim Mansell Outstanding Contribution Award. This award will be presented to an individual who the judges think has made long-term outstanding contribution to the lives of people with a learning disability and or autism. And there was one, two, three, four, five, six, seven, eight, nine, ten, eleven, twelve, thirteen people that were shortlisted, and we won as a charity, so I'm very, very proud. So, yeah, so that was happening in Birmingham, apparently 800 people attended the event, so we're all very proud of that. And also, I was shortlisted for the Lifetime Achievement Award for the National Diversity Awards with ITV. So, that's going to be happening in September, so I'm going to Liverpool, so I'm excited about that as well, so all fantastic news. So, I've been sent in a couple of books, I just wanted to share them with you. So, The Parent's Guide to Managing Anxiety in Children with Autism, written by Raelene Dundon. So, this is a complete introduction to autism and anxiety in children, full of clear, concise advice and practical strategies. This book is a treasure trove of information for parents. It covers the basics, such as what anxiety is, how it manifests behaviourally, and why it is common in autism, before presenting CBT-informed practical strategies, but managing a common range of anxieties, separation, social performance, phobias and generalised anxiety. So, you can actually purchase this copy from Jessica Kingsley Publishers, so that's www.jkp.com forward slash autism. Just say that again, www.jkp.com forward slash autism. So, The Parent's Guide to Managing Anxiety in Children with Autism. And another lovely book for children, written by Claire Minnie Payne. I hope I pronounced that correctly. It's called Noor's Super Autism. There's a lovely picture on the front of a young lad with eight offenders dressed in a super outfit. So, autism is super. I am the same as you. This is a lovely book about a young boy. Sorry, this is a lovely book about a young boy called Noor, whom is autistic. And this book tells us what it's like to live with autism. He's an inspiration to other boys and girls who have the same condition. It will teach them what they can achieve, anything, even despite having a diagnosis. It's a super uplifting story. It's beautifully illustrated and quite a large font, so easy to read. So, if you're interested in that, you can buy that from Austin Macaulay. So, that's spelled www.austinmacaulay.com. And the last book I'm going to promote that was sent to me was by Dr. Sophia Moonsey and Adele Devine, who's also been one of my guests, and one of our Autism Hero Award winners. And it's called Her Parent's Guide to Autism Diagnosis. What to expect and how to support your child. Again, you can get this book from Jessica Kinsley. So, that's a nice, big, thick book. Lots of information in this book here. So, please check it out on Jessica Kinsley. You can get so many different books about autism. So, I have a lovely lady called Pam Donnelly, who's going to be one of my guests today. So, Pam is the founder and chairperson of Avalon. Pam was inspired to set up the charity following the autism diagnosis of her daughter, Ava, who was two at the time. Ava was nonverbal and has found the process to be daunting, difficult and isolating. The charity exists to support other parents by offering parental guidance and support. We deliver innovative wellbeing programmes and family events and days to bring family together. Well, hello there, Pam. Hi, hi, Anna. Thank you very much for having me on. It's a pleasure to be with you. Yeah, it's lovely to talk to you too. So, before we talk about autism, before we talk about your daughter, who is Pam? Tell me a little bit about yourself and growing up and anything you'd like to share with us. Of course, yeah, no problem. So, a wee bit about me, I guess. Oh, where did I begin? So, I've kind of grown up with my mum. My mum raised us. She's got three sisters and, yeah, we grew up in the kind of Glasgow area. I guess the main thing for me is, you know, over the years, I've kind of developed myself into kind of learning. So, I do a lot of work in the leadership and management space when I'm not involved in the charity. So, that's a kind of big part of me is the kind of personal development side. It's a big area for me. Okay, so you said to put a charity. So, before we talk about the charity, can we talk about your daughter? So, was she diagnosed quite early? Yes, she was. So, yeah, Ava was diagnosed when, roughly when she was about two or three, we managed to get the diagnosis. Ava had been developing normally through, you know, it was roughly about 15 to 18 months that I noticed that some of her words started to disappear. So, she had language, she was speaking, she was on her feet very, very early. But over time, through the kind of period of 15 months to 18 months, I noticed a gradual loss of language. And it felt like she was there one minute and over the period of those months, almost disappeared into herself. So, went from having words and connecting with the world to really pretty much being into herself. Can I ask you, Ava, I always ask this to parents. Have you ever heard of autism before? Did you know anything about it? Well, not a huge amount about it. I did have an early experience of autism way back when I was doing work experience in an nursery. And I was working with some of the children and one of the women had given me an indication that one of the children had autism. And that she warned me to be mindful that when I came into the room we might scream, we might be scared. So, I was kind of prepared for that. But actually, when I went into the space and met with them, he had a very different reaction. So, rather than running away or getting upset, he actually ran over to me and hugged the bottom of my legs. So, we formed quite a close bond and they actually wanted me to stay on and do extra work with the autistic children. But I decided to take a different path, which is obviously a good thing in many ways. Because I think some of the skills that I've developed by taking a different path have been really useful for me with the life challenges that have been presented to me now. So, it feels like I was on a path with autism. I've took a different path and ended up back alongside that path. OK, so you've set up a charity and it's called Avalon. So, why did you think you would like to set up a charity? What made you think, right? Yeah, this is what I want to do. Well, I think the main driver behind it was that my own personal experience of going through the process of diagnosis, I think, is apparent. And obviously, I'm a parent first. I found the process of the diagnosis really difficult. I think because Eva was with us, it felt like, and then she wasn't. We experienced a lot of grief and challenges with just acceptance of their situation. And I didn't feel that there was a huge amount of support for families with those things. So, I had put loads of support in place for my daughter. I'd managed to get lots of different things in place for her. And it just felt like even when I had done all of that, we still weren't OK. Me and my husband still weren't OK and we needed additional support. And when I looked around, I couldn't find anything that really I was looking for. So, I think the process for me was about if there's a gap and I recognize that there's a gap for me, perhaps there's a gap for other parents out there who are looking to connect and are just looking for that additional support that I felt was kind of missing. So, the reason we decided to set up Avalon was for that reason. What were you looking for that was missing? What was it? Because you said you put some stuff in place. So, what was it that was missing that you thought, oh, why isn't this around? Or why can't I find this at all? What was it that you were looking for? Well, I guess the main thing for me was that when you're in the space autism, it's a life journey. I think that was one of the things that I got really busy early on to put everything in place for Eva. And I realized that I was actually neglecting myself in terms of my own wellbeing. So, actually, the things that we've created are programs for parents to connect to each other whilst looking after their own wellbeing. So, that was one of the major things that I felt I wasn't really prioritizing myself. I probably wasn't very healthy at the time. I was spending a lot of time putting things in place for Eva, and I guess that took its toll. And I guess when we got the diagnosis, something dawned on me that actually I'm going to be in this for the long haul. I'm going to have to develop different practices in order to be a better mum to my daughter. One was about processing the grief. I had to process that, and I don't think I did in the beginning. So, I think that the space and the time to be able to process the grief and to try and reshape my thinking around, rather than seeing this as a problem, perhaps seeing it as an opportunity to do something. And I think that was an important thing for me, was reshaping my thinking around the situation that I found myself in. Yeah, I totally get where you're coming from there, because I'm always trying to promote parents looking after them as well. And that's why we now have a wellbeing ambassador, which actually came on board during the pandemic because parents were really, really struggling. And talking about diagnosis, that's like a passion of mine. I was just reading an article today and I just wanted to share it saying that they're talking about Yorkshire here, but then they talk about the country as a whole. So, people in Yorkshire waiting longer for autumn diagnosis in a vicious cycle. The number of people seeking diagnosis increased rapidly during the pandemic, and the NHS is struggling to keep up. So, waiting times for autumn referrals have increased across Yorkshire, leaving many people facing longer waits before receiving a diagnosis. So, it also says further down, according to official NHS statistics, the problem is nationwide. In Leeds, the number of patients with an open suspected autumn referral, which has been open for more than 13 weeks, has only increased over the past few years. On April 2019, there were only 20 cases, which had been open for more than 13 weeks. On March the 1st, there's now 710, and then they talk about how it's increased from something like, what was it they were saying? While more people are now being met within 13 weeks than ever before around the country, this is still not keeping up with an increased demand. According to NHS statistics across England, there were 82,000 patients with an open suspected autumn referral, which has been up for more than that. And then what happened was that was compared, so for May 2000 this year, compared to 2019, there was only 18,331 people. So, that's like a massive, massive increase. What's the wait time? Do you know for a diagnosis where you live? Not locally, but I mean, I had done a lot of research in the beginning, and what I was hearing was that the average diagnosis age for the UK and also in the US was anything between 5 to 7. That tended to be the average age, but in terms of the waiting times, I think it would depend on the individual. So, for us, the diagnosis process was quite quick, but I think because Ava had lost her language and there was a regression, that's an immediate indicator. So, for us, the process was easier, whereas I know somebody, one of the mums that I'm working with whose daughter is, she's doing really well in school. She's exceptionally bright, but what she was observing was a lot of masking behaviours. So, in the skill environment, she was doing well, appearing to do all the right things because she was studying and was exceptionally bright. A lot of the signs went missed, and that was the difficulty. So, trying to get the diagnosis, in her case, she's now 14 by the time she got it. So, I think it's certainly different for different people, depending on the challenge. And I think it depends how pushy you are as well sometimes. And I know it shouldn't be like this, but usually parents that shout the loudest get what they want in the end. And I know that people are paying privately as well. She did go private, actually. She went private for her diagnosis because she wasn't getting anywhere through the usual channels. So, I guess different people will be doing different things. I think as well, you've made a great point there about being able to push. I think that's an early lesson, as you have to find your voice really quickly and you need to push hard. And it feels like probably when you're still vulnerable yourself, you're still having to fight through all the challenges and get the very best for your child. And I found that very early on. And I think that was maybe the realisation for me, is that I fought very, very hard in the early stages, got everything in place forever. We paid for additional early intervention because there was none available. And I think that's when the realisation hit me, that even after I'd done everything, I realised I couldn't really change the outcome and I wasn't okay. And I think my husband and I were struggling, our marriage was under huge pressure. And I just thought, this can't carry on, I'm going to have to find myself some help. And I'm so glad that I did that. And there's nothing wrong with finding help. Some people think, oh, it makes a failure as a mother, or whatever it is the way you think. It's just like, if you need help, ask for it. It's just like, there's no shame in asking for help because it is a stressful process and it is a daunting process. So if you go through the process, please find a local group close to you. Social media can be a negative too, but also it can be a really positive too. And there are many parents that supported each other. So talk to me a little bit about, because we want to develop a little bit more about your charity. So what's your current role in the charity? So my role at the moment in the charity is chairperson. So I'm responsible for ensuring that the services that we deliver for the families are aligned to their needs. So I do a lot of work with the parents to find out what it is that they want and need. So we shape a lot of our services based on what people are asking for. And I think that's been a really collaborative approach. So the two things that we're offering now is the wellbeing programme that's due to start in the 16th of August again this year. And it's been a huge success. We've seen some huge improvements. The parents that took part in our last wellbeing programme, we evaluated it. And we've seen significant improvement in how they were feeling, their energy levels were higher. They had stated quite significant changes in motivation, both physical health and mental health improved significantly. And one of the things I think was important was that people just felt that their relationships were better. So again, although it's a wellbeing programme, a lot of it is getting you to think about, you know, how do you make sure that those close relationships around you are supporting you and your journey? And it just gives people a free space to come along and talk about the challenges in a way that they don't feel judged. And I think us being parents, my husband and I being parents, really created that safe space where people felt, you know, not just do you organise the programme, but you understand the challenges that we are going through. And that was one of the great things we had back was that people didn't feel judged coming along to these events. And we were doing some really interesting things, like we were looking at COBOL, our immersion, was one of the strategies we were introducing. We were introducing the Wim Hof method, the kind of deep breathing methods that people can use when they're at home. And they've got, you know, that's what we were looking for, strategies that people could introduce while they're at home. What were all the challenges that they're dealing with at home? That was a key thing. So who can use this programme that you that's going to be fixing? Yeah, anyone. So I mean, at the moment, what we decided to do is we launched it during the pandemic. So everything was originally delivered online. After we evaluated it, some parents had said they would like more time face to face. So we've built that into the programme. But the breath work and the cold water immersion is online. So we had people last year joining from Essex, we had people joining from Wales. It was really great to have that mixed community. But what we also do is we finalised the programme by bringing people together in Loch Lomond. So people came to Loch Lomond, we done the breath work on the side of Loch Lomond, and we done the cold water immersion. And what was really special Anna was that the children had come along. We hadn't anticipated that would happen. But because childcare is a difficult issue for people, the children came along. And it was such a beautiful day. We had them over at the picnic tables, the kids, some of the kids came into the water. It was just a really, really, really special day. So we're looking at replicating that again this year and obviously adding extra components into it. So we're doing some stuff on yoga and other things as well. Yes, that sounds really, really good. So I'm just going to say, because you spoke about Loch Lomond, it reminds me that my son and my sister and myself, we're all going to Inverness and into the Loch because he's interested in the Loch Ness Monster. So it's 10 years ago since we've been. So we're going back again in 10 years, just for a couple of days. But we enjoyed the experience last time. So we're going back. And he's desperate to meet Adrian Shine. I don't know if you've heard of him, but he's the person that's done a lot of research on Loch Ness and the Monster. So he's always been to them asking if he'll be there. And they said he's not sure if he'll be there. Oh, my goodness. It's lovely. It's such a beautiful place, I think, as well. And that was one of the main things is that when we talked to people about the five steps to well-being and getting out in nature and all these things that are important as well as the connections, the relationships you have. So a lot of the programme is really focused in on trying to improve people's awareness of just ring fencing their time. And I think that's been one of the key lessons for me is that when I was really struggling, I was really neglecting myself. I wasn't ring fencing any time for me. And I think when you're dealing with a lot of pressure at work or you're trying to set up a charity, you want to show up as the best version of yourself. And I think you have to fill your own cup, if you will, and make sure that you're meeting time for yourself. So I'm a big advocate of that one. It is. And also, you've got to be careful as well, because there's so many parents, so many individuals out there that need advice. They need support. Sometimes you could be sucked dry. Absolutely. You're not giving your best. And because they're so desperate for the support, they don't realise that you're a person, too. You're a wife, you're a mother. And there's all of this sort of stuff that's going on, you know, lack of sleep, juggling, many different roles. So what's been the most challenging moment if you can remember on your journey? And what lessons did you learn? So people just starting out now listening, so they don't go down that road. What can you talk? If you don't mind sharing. Oh, no, not at all. I guess for me, one of the hardest moments for me was me and my husband knew we were struggling, I guess. And we went to one of the, it was one of the support services. The women had said, look, I'm not a counsellor, but I'm an autism specialist. So we she'd met with us. She knew where Eva was. And I remember that one of the most difficult conversations she had with us is we didn't know. I says, well, I don't know if Eva has autism. We don't know how far along she is. And this was before we had the diagnosis. And she says to me, your daughter's got autism. She's low functioning and she's going to require support for the rest of their life. And I remember me and my husband just stunned in silence. We just didn't know. You know, we just were not expecting that at all. And I remember how hard it was in that moment because it just felt it just felt so final. And we were really scared. We didn't know what to expect. We had never really had any experience with us before. But I think that moment was a really challenging moment for us. It created a lot of difficulty because it then kind of forced us into a position where we had to deal with it. And perhaps something to that point, both of us were in denial about it. So although it was a difficult conversation to have in a way that it needed to happen, because, you know, we needed to confront what was happening. And then after that time, I decided that I needed to go and get some help. So I actually reached out to a life coach who was very, very different to anyone that I'd seen. He was doing a lot of work on LinkedIn and I reached out to him. When I reached out to him, he had said to me, you can work with me, but if you work with me, I'm going to ask you to do one thing, you know, pretty much for the first six months. I never done any other work on any other thing. I just worked on myself and he said to me, if I'm going to work with you, I want you to track your emotions and to see, you know, how you're feeling every hour, on the hour for three months. Now, it sounds absolutely extreme that that's what you do. Well, what was interesting is I set my alarm on my mobile phone every hour and I tracked it in my mobile phone. But it was a really, really powerful thing that we'd done because after the three months, I mean, I didn't need the three months. I started to identify high points and low points in terms of my emotions, but what it allowed me to do is to think about what was the cause of that and what I'd realized, I think, which is quite confronting, is I had just allowed the situation to make me unhappy and actually, I'd got used to doing a lot of things while not being happy and feeling that I was missing some joy. So actually, it was really challenging, but at the same time, it was the realization that I needed to do something else to make changes to the way I was feeling. So, you know, thinking about, you know, I really became more conscious about drinking more water, I was being more mindful of my diet, and it was strange, but that feeling of, you know, regaining a wee bit of personal time when I was focusing on my fitness, I started to change and feel differently about my situation. So whilst autism was still there, I started to feel differently because I realized myself that, you know, you only get one crack at this, you know, your situation's difficult, but you can't allow that to ruin the moments that you currently have. And I think that was a big moment for me. OK, sounds pretty good. I'm not sure I could have done it every hour. I suppose if you don't try, you'll never know. So I was going to ask you, so can you think, because obviously when we're supporting our children, there's so many different avenues that we have to go down to make sure each point, there's the appointments and then meeting people that don't know your son or your daughter, and then you have to go through the whole thing again. That's why I always advocate for the autism passport that's on the automatically that our charity supported and funded because it's just like there's nothing worse than having to go through the whole thing again when you go to an appointment. I know it's just very frustrating. So is there any moments in time that you think, wow, it's changing perspective of how something once you thought was negative to a positive and something that you never thought that you would be grateful for within your journey? Yeah, I guess the one thing with the situation waiver was that, I guess it was a challenging situation. Can you still hear me? I can, yes. Oh yeah, you can, that's fine. Yeah, I'm just making sure. So yeah, I think there's something about any kind of adversity is that I think sometimes you can grow a lot through adversity. So I think as a result of having either, whilst there's been difficult moments, I've had to become a better person to be doing the things that I'm doing. And I guess I wanted... What does a better person mean? What does that mean to you? Well, to me, it's more about when you think about setting up the charity. I don't know if I'd never had personal experience with it. I don't know if I'd ever have been inspired so much to do something about it. So to actually, to set up a charity and to be helping other people now, I'm doing something in my life that I probably would never have done if Ava hadn't been born. So actually, I think Ava, in the experience of her, had been a mum and navigating this challenging setting that we've been in. I think, to me, what's interesting is I've become more selfless and I'm actually doing things now for other families that I would never have done had I not had that experience myself. So I think sometimes adversity is a great teacher. There's opportunities for you to grow and get better if you can work through that and see the opportunity. And I suppose regarding Ava as well, because Ava had very, very little language, we were terrified in the beginning and didn't think she would be able to ever speak. There was moments when we thought she would never speak. And she is now. She's developed some functional language around asking for what she wants. We held a birthday party for her on Saturday. She was up dancing with the rest of the group and she was also going around taking selfies with people. And I'm just like, we would never have expected those things to have happened. So in those dark moments when I take you back to that moment with a woman in the room with us that told us how bad things were going to be, I think sometimes you need to choose who you're listening to. And I chose not to listen. It's not that I didn't hear what she said, but I chose to focus on what Ava was able to do rather than what she wasn't. And I guess your point about when you go into these meetings, sometimes these assessments are all about what your child is unable to do. And I think as a mum it takes a piece of you every time you go through that process. Whereas, you know, for me, I found that there was more value in spending time looking at what was she good at? What did she do? Let me see if I can turn the volume up in those things. That brought me more joy, but it also helped bring the best out of Ava as well. I think the thing is as well sometimes depends on what process you're going through. So if you're, say, for example, you're going through a paper session on personal independence in Cayman. If you write a lot of things of what they're really good at, then they sort of think, oh, well, they don't need that support. So you have to balance it in a way that even though you know that your daughter or your loved one has made some progress, sometimes you can't dwell on that because then if you do, they don't give you the support for the other stuff that they actually need. And I know you shouldn't think like that, but that's just the way this works. That's the reality. And actually, you make a wonderful point there that it does take out of you. When you have to go through that process of describing your worst day, it can be difficult as a parent to have to do that all the time, which is kind of the hurdles you feel you have to go through to get the support you need. But I guess you're right. I guess it's separating those processes for how you live your life, isn't it? And you're using those moments to focus on our gifts. Like Eva loves swimming. She's doing really well in that area. I've just spent more time focusing on what she's good at, and I've found that that's led to better results for her personally and also more joy for me as her mum. But I don't underestimate the other part, which is actually, we do need to go in and talk about our worst days because otherwise the support that you need isn't in place. Yeah. So how old is Eva? She's nine now. She's nine now. No, it's just Eva. My sister's got a few kids, so she's got some cousins that she spends a lot of time with. That's been really good for her development as well. So with you being chair of the charity, what difficulties have you seen parents have? I mean, I guess the main thing for me is that generally there's been a lack of early intervention. I don't know if you've found this, but sometimes even if parents get a diagnosis or if you suspect that there may be a concern, you're not able to access any early intervention or whatever early intervention is there is fairly limited. So we managed to get six, you know, speech and language sessions for Eva. That was all we pretty much got. The rest of it we had to sell funds. So a lot of parents that I've speak to are self-funding a lot of support for their child. Want to learn... Say that again. I think it's not cheap either, is it? It's so expensive. We paid for so much early intervention, Eva. And again, we were maybe £70 per session in the early days. And we'd done like sound therapy. We'd done a variety of different therapeutic supports that were kind of non-invasive to try and support her. But as you say, it was so expensive and it's hard for parents to keep that going. So I think really that is a key issue. And I guess the early intervention or any therapeutic supports that are there help parents understand their children more and they also help them manage some of the challenges because often the difficult behaviour that you may have to deal with can be a consequence of not having the right kind of support and place for your child. And it's just not available. So that's been one of the major issues is early intervention. I guess the other one is the long waiting list for diagnosis. I've always been the case since... Always. My voice started in 1999 when we settled the school and that it's always been the case since then. And then so many different, like it's been on the BBC and the wait times are going to be short. And you know what, I've never ever seen short. It's just always been the same. It's just constant between three and five years. Again, very much a postcode lottery. And as I've said, some parents have waited 10 years or some parents have even waited even longer. And you've got adults as well struggling at work or whatever it may be and then they go to the GP and then they say, oh, what do you want to diagnose this for? You've got this far, you don't need one. It's just like, I've come to you for some support. I'm asking you to refer me. It's not like, what do you need it for? That's right, that's right. And as I say, for some of the parents who were unable to get a diagnosis, they weren't able to access any services. I guess for me, the big challenge for me was when we got our diagnosis forever, I got a big red line put through all the potential services to say, actually, you've done everything you can with her. Just carry on doing what you're doing. And I remember thinking to myself, this cannot be the experience for parents. So they were saying, you've done everything, big line through this one. There's no support for you. And I remember feeling really isolated at that point. So everything we'd done thus far was thrown back, but it was very, very difficult to have that as an experience for somebody who is, you've been told in one hand, your child will need support for the rest of your life. But actually, in the other hand, there's a big red pen. You don't qualify for any support. Yeah, it was like when we first started out with setting up the school for my boys. Obviously, we never do anything like that before. And because the boys were at home, they were just getting in five hours. And then at one point it sort of went to 10 hours, but a very short period of time of home education where we had two tutors that came to the house. So like 10 hours wasn't enough, but it was mainly five hours. And then I was getting three hours of respite, which wasn't a lot if you're trying to set up a school. And then once we did set up the school, the local authorities took the respite away because they said, oh, you don't need it anymore because you've set up a school before. Oh, that's unbelievable, isn't it? I just thought, oh, dear. But that was at that time, you know, and I had two boys, very different needs, you know, very poor sleep patterns. And it was just like, I don't even know half the time I would have got through some of the days. But hey, you just keep going, don't you, one day at a time. The sleep deprivation is definitely hard. That is a definite challenge when you're trying to hold down a permanent job or you're working full time, but you're also then trying to set up the charity and get no sleep. I know. Oh, goodness. I was 29 and his still sleep pattern is still bad. We're having particularly bad time at the minute, last few weeks, because he's got some gut issues and we're on a big, long wait at least a season one. But it's just like, you know, you just have to sort of keep going and try and grab, you know, 10 minute nap here and there when you can. So let's focus on positive stuff. So what is your most excited about for the charity and the parents that you support? So tell me something. If you can share some stories. Yeah, of course. But without sharing names. Of course. I guess, I guess for me, what's been what I'm most excited about is actually creating something that's designed with parents for parents. I guess that's something that I'm really interested in is for the, you know, the parents that I'm working with now for them to play an active role in shaping the charity that I've taken. We introduce some, we introduce some. Can you hear me? Yeah. I can now. You just went off for like a second, but you're back. All right. Okay. So yeah, I guess that the main thing is just about creating something with the parents collectively that they own so that they are designing services for themselves in essence. So I think that's something I'm looking most forward to with the charity. And I guess the other thing with the charity is we've introduced some of these parental connection days, so family connection days. And that's been something that we've uncovered organically, which was childcare has always been a difficulty for some of the parents that want to engage in our services. So we started to organize events where there's things that have been organized for the children with a view to giving the parents a rest. So respite and getting a break is a big part of what our charity's about. So these family days, these family connection days that we've been organizing have been really well attended. We've had over 150 people at certain events at one of the events that I was at last time, one of the young children who was at the event came up and says, this has been the best day that I've had in such a long time, thanks for organizing it. So it's stuff like that. It's finding out that initially our main focus was respite and we've had to get creative around how we deliver that. One, because we're a small charity and two, because you can put lots of events, one for parents, but if they're unable to get the childcare that they need to attend our events, then we had to look at a different way to solve the problem. So finding opportunities to put things in place for the kids as well as the parents has meant that we've created some space for the parents to have that downtime, which I think is really important. How are you finding fundraising for the charity? And the reason I'm asking this is that I've spoken to a few charities where they've had to close because they're just not getting funding or they're not getting the donations in, so are you struggling if that's outside and if COVID had a bit of an impact? Well, COVID was actually okay for us. We had to change direction after COVID, so what we originally intended was we were going to pilot some early interventions with some of the schools. That's originally what we intended to do, but when the school's closed, we couldn't do that. So we put a questionnaire back out to the parents to ask where the biggest challenges were. And basically, as you had said, mental health was an issue because they were at home, they were isolated, they had no access to the usual services that they were used to accessing. So that's where the idea for the wellbeing programme came around and delivering it online meant that we could still reach people, which was a major priority for us. So in many ways, the COVID situation, we did navigate that well. From a funding perspective, we managed to get some funding for the lottery and we're going in for our next set of funding with the lottery again. So I'm hopeful that we can qualify for our next set of funding. I guess the challenge is when you're a small charity, they want you to have a track record before they give you access to funds, and it's almost that chicken and egg scenario where you've got, you know, so we've managed to deliver a lot of positive outcomes with what we've had. I think we need to do more on the fundraising, that's for sure. But I feel like now as a charity, we've now established ourselves as somebody who can be given a pot of funding and to create something well that's evaluated in it and it delivers positive results for the people that we're supporting. So I think that's been a slow build for me, is doing that alongside working and other things. It's been the challenge. Yeah, so who's the team? Do you have volunteers that support you? Yeah, at the moment. So I've got a lot of us looking at our board as well as some of the other parents that provide some support and we get a lot of volunteering support with the school as well. So that's starting to pick up pace. So some of our family events, some of the schools come along and the teachers come along to volunteer as well. So we're definitely making great progress and I think what we would like to see going forward is for the parents that take part in the wellbeing programme, if they would like to provide peer mentoring for others in the future, that would be something we would definitely like to explore. So if I said to you, where can you see your charity? In five or ten years time, what would you like to see? Oh my goodness. Wow, that's a great question. I think for me, I would like us to be in a position where we're offering different types of programmes for families that, you know, I guess, and I'd like to be offering support to people across the UK. That was always what I wanted to do, but as a small charity, you kind of have to grow where you're planted. So we're trying to work with the theme of deliver some great results in the area that we are located and will grow out. So in five years time, I would love to be supporting families across the UK in a number of areas, but certainly providing respite and providing viable opportunities for respite would be something I'd like to do, and providing more solutions to improve wellbeing and generally things. If I could, some more things on the early intervention side would be something that I would really like to be doing. That sounds great, and respite is so key for parents, I don't think. When I speak to parents all the time, they've got no respite, oh, I wish I could have some respite, or had the respite and it was taken away, or I can't find somebody that can look after myself because of their complex needs, or, you know, when they're given a pot of money. It's just there's so much around respite, and it's just so key for everyone. So what have you seen some of the parents that you've been working with doing that you think that other parents, because we're always, one thing about Women's Radio Station and talking old things also, we're always trying to give advice, tips and advice, and parents are always looking for that. So what have you seen with some of the parents that you've been supporting? What type of things that you've seen that they've been doing that might benefit some of all this news? Yeah, well, I guess it's what, I mean, every parent that I've been dealing with is different because they're dealing with so many different issues, I guess. But I think a couple of things that I saw that was quite good was that one of the parents's child in the Go Talk, they're kind of almost the communication tool. I don't know if you've seen that. They use them a lot more in America than they do here, but she's been using that to help her daughter develop. I think it's called Go Talk 20 Plus or something. It's maybe a talker, so it's a communication pad that they use for. And what's interesting about it is, again, she's got kind of limited language, and this idea is that people are able to see more than they potentially can. So to show them how to use the talking device, it can help them. Your children express their needs, ask for things that they want, because there's a range of options on the tablet that can help your child communicate. So that one's been quite good. Another thing that's been really successful is the, I don't know if you've ever seen this, but the speech and language app called Gemini, I don't know if you've ever heard of it. No, I don't know that one after. It's excellent. And again, for me, I guess the challenge is, when you've got a speech and language and you're paying a lot of money, I was £70 every session, which was money well spent at the time, but then I was looking for a different solution. So I've been using the Gemini Speech and Language app, and again, there was a lot of Teach Your Children language through video, so they watch video, and Eva's very visual as well. So I've used the app, and it's helped develop Eva in areas that I didn't think she would develop. So kind of personal skills, learning to speak, all of these things that we kind of struggled with, the Gemini apps being really worthwhile. So again, there's a cost to that monthly, but it has been worthwhile, and it means that you've got... If you can go Gemini, then please speech and language therapy. That's right. So I think they call it Gemini education systems, but if you put that in there, it's an Americanized app, but I have to say it's been fabulous for us. It's helped Eva develop in areas where we were really surprised. You know, life skills as well as speech and language. So it was, again, she's a highly visual learner. She learns through video, and that's a great tool for us to have alongside other things as well. So I think that's been good. Most of the parents that I've had support and dealings with have all paid for early intervention themselves, sadly, because they've had to. There's been no other option, and most people have felt the benefit of that early intervention. So I think it's still worth doing it. For me, I think Eva's got more language now than she ever would have if we hadn't done the early intervention. So I think that's another important strategy, but it's not always possible to do it, and I get that because cost is a difficulty. So if you were to go back, and if I said to you, what would you do differently with Eva, with hindsight now? So starting the journey again, would you do anything different or are you quite happy with what you've done so far? I'm happy. I guess I suppose if I could do something differently, it would be maybe not to have as much of a grieve, an actual grieving process. I guess I don't know whether you can change that or not, but I think for me, I knew there was something that needed support, and I knew something at the time wasn't right, that she needed additional support, but I guess how I dealt with it, I did feel it was natural for me. I went through a grieving process, and I guess if I could change anything, it would be to not grieve for so long and just to try and enjoy it. I think my sister gave me a really good piece of advice. It was very challenging at the time, but I remember when we were sending her to a different school, so we had her heart set on a school we were going to. She ended up in another school, and I was upset about it. I remember my sister saying to me, you're so busy grieving what you didn't get, you're not enjoying what you have. That was really challenging, but actually really important. I think that was something for me that was really important to take on board, was you're missing all the good bits because you're not enjoying what you have. I think if anything, it's just pay more attention to the good things you have, even though it's hard, try and enjoy it more because if you pay attention to those things, great things can happen. So that's the best advice that you've received, you reckon, from your sister? I thought, well, it was challenging advice, yeah, but it's almost like enjoy yourself. We've got limited time and enjoy as much as you can. I know it's maybe not what you expected, and I know it's not easy, but also appreciate what you have because you're sad in our first day of school when you should be happy because she's learning. There is milestones here. You just need to learn to see them, and I think that was a great learning in the whole autism journey. I think they're called small victories, aren't they? A lot of parents pay attention to that, as you have to reprogram the way you think. If you compare your child to the journey that you think they would have made, you'll spend a lifetime in misery, whereas if you pay attention to the milestones that they're just achieving themselves, you feel differently about it. You feel more joy, and actually you can see the progress, so I think that's an important lesson too. At the beginning of the programme, I was talking about some books that people have sent in to me. Is there any books that stick out in your mind that really helped you, or websites, or any useful links? Yeah, of course, yeah. Books out overnight and the SOFT app, so just for people listening in? Yeah, so I really enjoyed, when I first was going through this process, I was reading a lot of scientific books as ever just to try and understand it, but I found that that was quite a negative read. There's a lot of focus on the deficits, so a couple of books that I read that I found really useful was The Autistic Brain, with Temple Grandin. She wrote The Autistic Brain, which I thought was really interesting. It balanced out understanding what was going on in The Autistic Brain, as well as some of the gifts that reside there as well, and I found that to be a great read. A couple of things, another few books that I did like, and again, this was because my daughter was non-verbal. I couldn't understand everything. I wanted to ask her questions. I couldn't always get the answers I wanted, so I read a few books from children who were non-verbal. I think one of them was called The Reason I Jump, and I've read another one called How Can I Talk When My Lips Don't Move? So again, there's a variety of different books out there that I wanted to read from somebody who was non-verbal, because I felt that took me closer to understanding my daughter, and it helped me make a lot of good decisions, actually, because in the early stages, I was wanting Eva to go to mainstream, and after I read The Reason I Jump, I think the writer that talks about one-on-one learning being much more beneficial than being in big groups, so after I read that book, I made the decision to put Eva in a communication unit where she would be smaller classes and she would have more one-on-one attention. Just by reading that book, it gave me insight into potentially what would be better for Eva rather than what would be better for me, so that was, again, another great read. Okay, so the holiday season is upon us, the summer holidays, families love it, some proud families dread it. Yes. Are you going on holiday, or have you been on holiday, and I know just a lot of people, I have spoken before about the lanyard that people don't know about it because we spoke, so can you share any experiences? Of course, yeah. We went to Spain just recently there, so we went a couple of weeks before the schools closed just because it was going to be quieter forever, so we decided to go and hold you there, and we went and signed up for the lanyard with Glasgow Airport, and I have to say they were exceptional. I was worried about getting on to a flight as well because I was worried that all the press was showing cancellations, long queues, and as any parent who's got a child with autism will know that that can be a really stressful situation, definitely for Eva, so when we got to Glasgow Airport, they gave us the lanyard, they made Eva feel like a VIP. They wrote her name on it, they said she was a VIP, and they left us in a waiting area that was really quiet, and when the place to check in opened, they took us over at the front of the queue, we got through in no time at all, and then they put us through the fast-track process, so it just took all the pain out of the travel for us. They were exceptional, so a big shout out to Glasgow Airport because I thought they'd done a terrific job in looking after us, and it certainly made our travelling with Eva much more bearable, so for any parents out there who are travelling this year, I would certainly encourage you to look at the lanyard. Yeah, I think it's the sunflower lanyard, isn't it? Yeah, it's quite easy to apply for one. Did you find it? Yep. Will you just go up to the desk as soon as you arrive? I mean, my husband, he went online prior to get into the airport so that they would expect us, but I think you can go for it. I think it's an idea to go, you know, prepare before you go there. Well, he did. He done it online, and it stated that we were looking for that, and when we got there, they were so well organised. It was excellent, so yeah, I would definitely, definitely encourage that. So I was reading that you're dedicated to maintaining your own personal fitness. I am. And it's completed several endurance events to raise money for the charity. That's right. And so, Glasgow and Edinburgh Half Marathon, the Four William Marathon, and the Five Peak Challenge attempting to climb five of Scotland one row in 24 hours. That's right. Tell me a bit about that. That's right. Well, I mean, that's been great. That's been one of the things about getting involved in the charity that's been good for me, is that in order to raise funds for the charity, I've had to take on big challenges that, you know, can gain some attention, but actually also help me get fit along the way. So I think that's been a big thing. Working with a coach was a good thing for me because it got me to focus on my fitness. So I spend a lot of time to recover. I do a lot of running. I do a lot of kind of body balance type yoga stuff. I do a lot of meditation. And I'm also involved in, I do a lot of cobalt and shivering and so on because it really does help with your kind of mindset. So those events have been exceptional. Each one of them challenged me in different ways. But the most important thing and the driver behind it was to raise money for the charity so that we could start to offer services to other families to make a difference. So I think it's combined a lot of, you know, the need to do something in the charity has encouraged me to get better along the way because I've had to, you know, I've had to do these things in order to fund some of the programs we want to deliver. Now that's a superwoman now and they're running. But running's been a big deal to me. Mine's more dancing and exercise. Well, the weird thing is about running, I don't think anything, it totally transforms my mind if I'm having a bad day and I go for a run. I never want to go for a run, but it's always after the run. I think I'm so glad that I've done it. So I do love running. And weirdly enough, I love the kind of meditation side of things and the body balance and the yoga side of things as well. So I think it's a real balance and I do a wee bit of cycling as well. So that's another thing that I'm interested in. Oh, brilliant. So you're currently writing a book titled Light and Shade, which provides a parental perspective on raising a child on the autism spectrum. So how far have you got with it? Well, I am on the way. So I've written maybe about 10 chapters and I'm in the process now of looking at getting that edited and getting it put out there. I guess the challenge was that I know lots of parents have written about autism, but one of the main things for me was that I think there's a personal journey as a parent that you have to go through and then you have to think about the other aspects, which was making sense of this to try and do something that would make a difference to other people. So it is pretty much going to be my own experiences of what it was like in those early days and then what I was able to do in order to put the charity in place to support other parents. So, yeah, really just doing it to raise the awareness of the charity and the need for families to get the additional support that they need, I guess. Oh, brilliant. I wish you all would look in the world with that. Thank you. Well, you'd have to send me a copy when you've completed it. I will. We have one of our charity champions, Beverly. She does the book reviews first. She writes really good book reviews. Wonderful. So once it goes through, she can write a review for you. And we can put it up on the charity website. Oh, that would be excellent. Oh, you just got a lot of little extremes to your bow. So that's fantastic. I love to hear stories like this. So I just wanted to remind people about Autism's Got Talent. And that's going to be happening on October the 15th at the Mermaid Theatre. I can't believe it's 11 years we've been doing it now. So we've got 20 performers that are traveling from all over the country. Tickets are on sale. So if you're interested, they're on the charity website. That's www.annaKennedyonline.com. We have our resources page on there. And lots of information. Check out the latest news. Or if you want to subscribe to our newsletter, it's free. Again, all on the charity website. If you want to follow me on social media, it's at AnnaKennedy1 on Twitter. AnnaKennedy Online on Facebook. And at AnnaKennedy will be on Instagram. Just also wants to remind you about our new project, First Steps. The closing date is the end of August. So if you're autistic adult and you want to set up an online business, you are sending your entry. Let us know what it is that your ideas are and how you feel that you would be able to approach it. And then the winner by four judges of which I am won will receive a thousand pounds and we will mentor them along the way. And then at the end of the year, we will share with everyone how they've got onto it. It's called First Steps. It's on the charity website. Closing date is end of August. So the winner will receive a thousand pounds to kick off their business. And also I'm working with Daisy Chain again, who I'm one of their ambassadors. November the 19th is the Roadshow that we're doing on some Scott Talent with them as well. So that's going to be at the Globe Theatre, a wonderful theatre. I visited it almost. It's been a few weeks ago now. Amazing theatre. And yeah, if you're interested, information will be on the Daisy Chain website or the Anna Kennedy Online website very soon. And I've also just become patron to a golf club. So it's Warren's dreams, golfing dreams. What an amazing young man I met. Started volunteering at Godstone Golf Club when he was 10 years old. He's now 22 years old and he teaches autistic children and adults and other individuals with a disability. He's such a lovely young man. So a fantastic golf club. And I hope to go there with Angelo at the end of August. So I just want to say, Pam, it's been a pleasure talking to you. And I hope that your charity grows from strength to strength. And looking forward to seeing you both as well. And you're a busy bee. And I love it when I hear stories like yours. So congratulations with everything you've achieved. Thank you so much. It's been a pleasure coming on and talking to you today. And I'm going to be advertising a wellbeing programme on social media. So it starts on the 16th of August. So keep an eye out on social media for that, for anyone that might be interested. Quickly, what's your social media handle? Oh, I was supposed to get that ready for you and then I didn't do it. So yeah, I'll say... Oh, the website is Avalon. So it says Avalon.scot, really simple. So if you go to Avalon.scot, so www.avalon.scot and you should be able to get in contact with me there. We're going to be promoting it on LinkedIn. We're going to be promoting it on Facebook as well. So thank you so much. Oh, thank you. Thank you very much, Pam. And thank you everybody for listening in once again. And keep going one day at a time. We will get there. Bye.