[Speaker 2] (0:01 - 5:15) Hello, this is Anna Kennedy. We're talking all things autism, and we are promoting mental health and well-being during this difficult period of COVID and lockdown. So what have I been up to? I'm still a busy bee, but I'm still missing talking to people face to face. I've been zooming here, zooming there. I'm doing a new one on Wednesday. I forgot what it's called now, but I've just seemed to find all these different ways of communicating with people. So we have been finishing our competition for our Christmas cards. So we've got now five really lovely Christmas cards. So last year's cards from designed by Harvey Price and by Patrick. And this year we have two lovely designs. So if you check out the charity website, it's www.AnnaKennedyOnline.com. You can see our 10 Christmas cards, two of each design, three pounds 50 plus one pound 50 postage and packing. So this is helping the charity because obviously at the moment I was reading somewhere 60 percent of community groups and charities have now closed because of the lack of funding. And how sad is that? Because a lot of our smaller charities are the backbone of society. So if you can help us out with purchasing some of our Christmas cards, all the designs are on the charity website. I've been doing my chats online. So my recent guest was Brian Chandler, such a lovely gentleman who's diagnosed with Asperger's syndrome. He's got a really great supportive group, community group on Facebook. And he also has been supporting his mom who has dementia and he was talking about moving as well during lockdown. So it's been a bit stressful for him, but he's coped really, really well. So if you want to check out Brian's chat with me, that is on our Anna Kennedy online YouTube channel. So we've got lots of different chats on there in the past with Richard Milan, with Carrie Grant, with Casey Ainsworth and with John Paul Hoseley. And now with Brian Chandler. We've also been promoting our anti bullying campaign. Give us a break. So we've had so much support from everyone. So we've been working in collaboration with Watford Football Club. So we created a video with them and also our anti bullying single by Lauren Lovejoy. We're going to be speaking on men's radio station. So we're excited to do that. And also the last thing that I'm going to share is our young charity patrons. So I put a shout out for young charity patrons who would like to support our charity and help me spread awareness and acceptance on autism. We were inundated with lovely, lovely entries. I wish I could have chosen them all. I was only supposed to choose two, but I chose seven. And just want to give you some of the backgrounds of some of the young people. So we've got OJ Bridges. So first of all, I want to just say that I'm so honored to be part of the patron team for Anna Kennedy online. It's such a great achievement and can now be a massive highlight to my life. I love working with Anna at Autism's Got Talent and now support the charity even further is beyond a dream. It's an amazing thing to happen. I think I can also bring a lot of motivation and empowerment as when I need to be there for people or need to speak about things. I'm very passionate and motivational in what I say. And it's OJ's birthday today's 15. Happy birthday to OJ. Another of our patrons is Daisy. Daisy, I met a couple of years ago and she shared she's over the moon in being chosen to be patron for Anna Kennedy online. This will be a wonderful opportunity and I hope the charity benefits from my bubbly, enthusiastic and imaginative personality. I'll enjoy being part of this wonderful team and one other. If you want to check them all out, they're on the charity website. Callum Carage. Callum, I'm so happy and proud to be chosen to be a young patron of Anna Kennedy online. Callum's mom was actually one of my guests on women's radio station. Callum was adopted from Romania and he's an amazing street dancer. And he's come so far. He's got a diagnosis of autism and ADHD. He shares that this charity has helped me a lot and given me lots of opportunities and helped me believe in myself more and given me confidence. I want to help other people to understand that being different is OK. So please check out and you can read all about our seven charity patrons and my overseas ambassador. And and that is Austin and Austin's from Canada and he's the first autistic racing car driver. So I'm really excited to see what all of my patrons and ambassadors are going to bring to the charity. So today my guest is Brenda Beko. Is that how you pronounce it, Brenda? Is it Beko or Beko? It's Beko. Thank you so much for coming along and chatting to me on women's radio station. So Brenda is the founder of Apparent Pathway and she works with parents, raising children, living with individual differences and needs. And she supports them to navigate through procedural challenges so that they can stay empowered to support their child. So Brenda, before we talk about all the wonderful things that you've been doing, tell everyone who's listening in. Who is Brenda? [Speaker 1] (5:16 - 6:17) Hi, everyone, and thank you, Anna. My name is Brenda and I am firstly, I'm a parent to an immensely wonderful son who has specific educational and development requirements, which include ASD and ADHD and possible PDA. But that's not diagnosed. And recently he has been experiencing seizures, which are currently undiagnosed. Yes, I am born and raised in the UK. I grew up in the 80s. I went to a faith school in the suburbs of London. And so what my son's condition and how he experiences his learning is something that is quite what was new to me upon diagnosis. But growing up, it's something that I don't recall like experiencing. [Speaker 2] (6:19 - 6:38) So had you ever heard of the word autism? I always ask parents this because some parents say, oh, no, I've never I've never heard of autism before. I've heard of it, but I didn't really know what it was all about. So how old was you? So when he got diagnosed and then had again, had you heard about autism before or did you know any other children and adults that were diagnosed on the spectrum? [Speaker 1] (6:39 - 8:15) I didn't know anyone that was diagnosed on the spectrum. I didn't know what autism was. I think as an adult, so he was diagnosed at four and a half. So he was quite young and the diagnosis itself is a bit of a journey. So, you know, when I saw him, he will you know, when he was at home, he was he was first of all, it was his obsessions and his constant discussions around like dinosaurs, dinosaurs and things like that. Yeah, I recall it and it's just great memories. And and I think it was things like not getting his attention and things. So he went through some assessments. They came back with, you know, he's a typical young, like two, three year old at the time. It wasn't until when he started school and he had a lovely teacher that did the whole procedure of coming to the home and sort of talking with the parents. And and I mentioned that, you know, at that time that he had he had gone for assessment. I had these concerns. There was no diagnosis, but just sort of to let her know. And his first day of school, he ended up turning all the taps on and flooded part of the building. And and then the teacher came back to me and said, let's have a chat about what we discussed before. And then the diagnosis happened from there, which all sounds quite smooth because I'm so aware that a lot of parents, that's not the case. [Speaker 2] (8:16 - 8:18) But so did you get straight away or did you have to wait? [Speaker 1] (8:21 - 10:11) It pretty much happened all within the first year. And I mean, this would have been back in. So he's 16 now. So this has been back in 2009, that particular time. And so, yeah, I mean, it was I guess and then when that happened in the beginning, once he had the support, but the challenges over the years then became apparent because he did get he got a statement straight after that because that's what it was at the time. But then there was a time because in that first year, there was a lot of changes for him and for myself. So at that time, I was made redundant and had separated from his dad. So then I became a sole parent. And then he had his diagnosis. There was a lot of new things for me to experience. And then, yeah, where he was at school, he was in a mainstream school. He was enjoying it. And then some things happened. A change of head teachers, ethos and things just got missed. And it was quite traumatic in the sense by the time he got to year five, so many things had gone on that local authority intervened and they made the decision during a time where it's very close to exclusion that they will put him in an independent school. And where he was for four years and mainstream school to begin with. He was. Yeah. Up until say year five and then went on to independent school. And then I guess living arrangements. I made the decision to move out of London. So then lived in. [Speaker 2] (10:11 - 11:05) So I went to move to Oxfordshire and there he went back into me because I'm just going to say because I've spoken to a lot of families where the move like you had to plan well ahead because obviously your son is on the spectrum. Like, for example, we lived in the same house for 19 years. So moving was quite stressful. Having two sons who were very different from each other. So let's say, for example, with Angelo, we do we'd have to like drive there, just sit outside the house for a while and do various different things. Put a toy in the room that was going to be his bedroom and all those sort of things so that we could build up to him moving into a house because it can it's moving house stressful enough as it is without having two young men on the spectrum. And even my husband, who's on the spectrum as well, he's got Asperger syndrome. He found it difficult and it took him a whole year to settle into our new house. [Speaker 1] (11:06 - 12:36) Yes, no, definitely. No, it was the case. It was a lot of because me and my son are very close in terms of communication. So explaining everything, every single thing that like I intend to do and we sort of talk about it. Even with that being the case, he did very well because the difficulties were that these things take time. So transferring from an independent school to a mainstream school required like the local authorities to do a lot of I guess a lot of paperwork and things like that. It didn't have to happen straight away. So he was commuting backwards and forwards. And that was really good because it's allowed him to have some independence and experience, but it was exhausting. But in terms, I guess the I don't know what the word is. The impact of the initial change came a little bit later because about a year after that, there were he was experiencing a lot of anxiety where he hadn't experienced it to that extent before. There was a lot of involvement from health services and it was it was really difficult. So when he did transition into the mainstream school, he wasn't actually engaging in education for a good six months. And so it was just really getting him into the school. [Speaker 2] (12:37 - 12:52) And then it was a big change for him. So a change of home and a change of school, a change of environment, all those sensory things that are involved with the change. So, you know, for us, it's difficult. So it must have been hugely difficult for your son. [Speaker 1] (12:52 - 13:47) Oh, no, definitely. It was it was for him. And he he did he did so well. I mean, he what he wanted the support and he wanted the help. And it was me. And he did he did receive some of the help. And a lot of the other the other stuff was just he had to wait. So it was like the lengthy waiting list. So the introduction of medication, a different type of medication was put in place. And then the option of talking therapy, but the waiting lists and the changes in the lack of staff and the availability prolonged that. It took him 18 months before he was able to receive any of that. So that was quite yeah, that was quite challenging. And so, yeah, he he he continued to stay where he is in 16 now, I believe. [Speaker 2] (13:47 - 14:02) Is that right? He is. Yes. Yes. So what's your son doing now? And what what what can you see him doing in the next few years, you know, reaching the milestone of 18 and 21? You know, has he got any aspirations? What's something that he might like to do in the working environment? [Speaker 1] (14:03 - 14:59) So he's very creative. He's into creative writing and with him being 16 at the moment. Unfortunately, with this year's situation, he wasn't able to do his GCSEs, but he did get predicted grades and he's now in college. And he's currently studying for his A levels. And there is a lot of support in place to sustain that, because the level of need is, I guess, through my my son's journey, it's more the social aspect now that's come to light, that's more of an impact rather than supporting him to learn. Like, even though that's still there. So at the moment, what he's finding challenging is the social communication skills. And even though he so wants to do everything independently, so it's just making sure that he, yeah, that he's able to. [Speaker 2] (14:59 - 15:21) So does he have like a key worker or a mentor that you can go to as and when, like, say, for example, when my son Patrick went to college, he had somebody, but he didn't. He said, I don't want somebody sitting next to me. I just want somebody as and when I need them that I can go to them and say, look, I'm struggling with this. Or can you explain this to me? I don't quite understand what they're going on about. So has he got somebody like that? [Speaker 1] (15:21 - 16:32) He has exactly as your son said. So he had a lot of support in the school setting. So when he came here on, he said, even though the support was available to him, he said he didn't want the TA because he felt that his experience of the TA was that, oh, they'll just say, come on, focus, look up. So with his experience, he said, I don't want that. However, I guess the part like me coming in and sort of liaising with like the staff to sort of recognize that because I know for a lot of parents that that part is if you sometimes if you decline service, you feel that, oh, you're not going to get it back if you ask for it later on. So it was a case of just making it clear that just because he says no, it doesn't mean that he doesn't need it. So it's a lot of communicating about having perhaps somebody there to sort of, yeah, oversee and just to let him know what the requirements are and things like that. Because I think for him, I think also it's like he didn't want someone sitting next to him all the time. And I think that's why he chose to go to college. He sort of felt that that would be able to give him a little bit of independence. [Speaker 2] (16:33 - 17:17) Yeah. Well, I've spoken to quite a few parents where their children weren't doing so well in secondary school, but once they got to college or were doing an apprenticeship or whatever it is that they've gone on to do, it's like they've coped better and they've become more independent. So, yeah, some teenagers and adults, you know, it works better that way. But for others, obviously, it doesn't work. So the thing with autism is they're all so different from each other and they all need different support. So it's not like one size fits all. So tell me a little bit about something that you've created and it's quite new. It's called a parent pathway. So what does that mean? And what's the reasoning behind it? [Speaker 1] (17:18 - 19:43) Yeah. So I set up a service really to solely support parents to stay empowered while they navigate through the challenges. So like from say so I previously my work experience was working within social services. So I worked as an independent advocate that would support children like on behalf of children to represent them in like challenging situations. And then I also took on a role working in a council borough where I was working as a family support worker. And those experiences I found quite challenging because from the parents perspective supporting these parents, I could see that in those challenging situations, there were barriers where their needs and their support were overlooked. Because quite rightly, the, you know, the aim of a lot of these professional roles is to work on behalf and for the child. So I think for me, it left me feeling very empathetic to support them. So bringing all that together and my background is in psychology as well. So I studied that and was really wanting to create a service that would provide like say one to one mentoring for parents and also group workshops where they'll be able to gain like insight into how these experiences and nuances impact their ability to stay empowered so that they can actually be present to respond to possibilities in creating going forward for their child's pathway. So what I recognized was and also as a parent, knowing that as well, how they would benefit from having insight and resources to be able to manage the situations that they're in. And so that would be including because go into reviews, meetings and, you know, panels, you know, there's lots of like tribunals and things. So there's a lot of really intense situations that parents have to deal with as well as attending to their child's needs. [Speaker 2] (19:43 - 20:07) So I minefield really, isn't it? It's just like you have to juggle so many hats. So you have to juggle the job part. You have to juggle the mom hat. You have to juggle like, you know, looking at all these documents that almost start the process. It's like it's been written in a different language. So if parents are listening in now and they want to find your website, a parent path, where would they look? [Speaker 1] (20:08 - 21:35) Yep. So the website is currently www.apparentpathway.com. So that's my website. And on that website, if they want to book a discovery call, so basically what that is is really just a it's a free call, just really a discussion about their current situation. So if a parent is in a position where they're feeling perhaps disempowered in the sense that there's things going on at the moment, you know, whether they're and that's impacting their emotions and how they feel about that. And sort of in a position where they want to have more agency, like ability to act more independently and to make decisions in their child, their child's progress, whether that's choices around the schools that they want to attend, the services that they want to receive. And also just feeling coming away, feeling a bit more empowered. Yeah, that discovery call is a free discovery call, just really to sort of discuss that and then going forward if parents want the option to work one to one over a period of time to look at how they're currently and try and perhaps approach things in a different way and seeing how they're able to feel empowered for the duration of supporting their child rather than in those particular moments. So it's just really having those skills. [Speaker 2] (21:36 - 21:52) Okay, so could you give like a little example of somebody that has contacted you without giving their name and where it's worked for them from the way that you work with them? Is it possible that you could share just a little example so people can get a little flavor of what it is that you do? [Speaker 1] (21:53 - 22:57) Yes, so when working with parents, we look at what they're, so first of all, it's really sort of bringing it back to them and looking at their, so I would look at their needs and their wants and their must. So looking at what is it and bringing it back to, so it's to have some sort of plan going forward and having that as a compass to move through things. So we would perhaps, the priority will be around, so with the parent that I've worked with, it would be they, you know, all they want is their child to stay in this particular school because that's where their cousin is. However, the support is not available. So we would work through some strategies where we would look at, so we're looking at the thoughts and how the parent would perceive the situation and then move through that and then practice that to be able to go forward and experience things in a different way. [Speaker 2] (22:58 - 23:04) Okay, so can I ask you, when did you start it? Did you start it before lockdown or after lockdown? [Speaker 1] (23:04 - 23:22) After lockdown, so it's all online. So in my previous roles, I did work with parents on a one-to-one as well, but this one is more focused and specific to parents raising children with individual needs and the challenges and nuances that they experience. [Speaker 2] (23:23 - 23:30) So can I ask you, how was lockdown, first and the second, impacted on you and your family life and your son? [Speaker 1] (23:31 - 24:55) It's actually made a massive impact in terms of a change of his health conditions. So in the first lockdown, we were staying with family members that were shielding, so he had his first seizure during that time. So at the time, didn't know what that was. And it brought it back to the first diagnosis because for me, what I felt was after so many years, once you gain the knowledge about what it is like living with ASD and ADHD, you sort of, it becomes second nature somewhat and there's always new experiences. But when the seizures presented itself, it was like, oh, it's something, a whole new thing that having to learn again. So he had his first seizure and he had another one. And at the time, it was, yeah, at the age of 16, it was a shock because it's not something that he's had up until this time. So when paramedics and health professionals, there's all new people coming back in and introducing and finding out and then going to research information. So it sort of reminded me of what it was like previously. [Speaker 2] (24:57 - 25:32) So the experience to seizure. So people listening in, what signs happened initially, is there anything that you can sort of, because what I'm trying to think of is this program that we have, this show that we have, I'm always trying to give advice to parents or give them tips and advice of what to look out for. So what happened? How did it impact on you? And also how did it impact on your son? And now, after the first, what would you do differently? Does that make sense? Yeah. [Speaker 1] (25:34 - 26:51) So were there any signs? There weren't any signs at all. I think in hindsight, because there is no sort of diagnosis and is still waiting for some information, I would say stress. But I don't feel he didn't necessarily show it in an obvious way, because at that time, he was due to do his GCSEs and then the lockdown happened. And I think at the time, everyone was waiting to find out, will they, will they not? He had anxiety, that sounds like to me. Yes, definitely. And it was a lot because just before the lockdown, there were like revision classes and there was that whole. Yeah, that whole thing of, you know, you've done your mocks and now you're doing this. And in hindsight, definitely the pressure was on. And I do recall him asking me, what's the decision? Have they decided, are we going to, are we going to still do the exams? Are we not going to do those? So I remember the first season being around that time. OK. So I'd say that, yeah, the stress, even though life had stopped because he was at home. And and then he's had, yeah, three more since then. And so, yeah, and I think each time, so. [Speaker 2] (26:51 - 26:58) So he had a lot of karma after the then the first time it happened. So are you more prepared? And what do you do with him? [Speaker 1] (27:00 - 27:15) So I am I've taken in the knowledge of what they've said that I have to do. So when he does, I mean, at the moment, the situation is cool. And I think that's that's quite difficult because that's that's like a real emerge emergency, of course. [Speaker 2] (27:16 - 27:16) Yeah. [Speaker 1] (27:16 - 27:44) And now it's so basically, ironically, he had one yesterday. So and he has an exam. Well, he had an exam this morning that they made the decision for him not to take it. So that definitely ties in with my belief around the stress. And I think for me, it's at the moment, it's very difficult because I don't know the triggers. And he's had a couple of MRI scans and they've been inconclusive. OK. [Speaker 2] (27:45 - 28:49) So and I think it's waiting at the moment for you to know exactly what is wrong. How was he finding learning online? Because I say, for example, like my son Patrick, he started a paleontology and earth science high diploma at Birkbeck University. And obviously, he's supposed to be going into uni, but now they're doing it online. And the first few sessions he found quite difficult for learning online. He said it's three hours, ma'am, online. I feel like I've got to really concentrate. He was obviously stressed because he was worried he wasn't going to be good enough. All those anxieties that you have around as well. And because of his Asperger's and then he said he felt like his eyes were being sucked out of his head. Now sort of weak. I think he were in week four now and he's coping it with it a lot better. And he's actually said, I think I like it better online now rather than going into the university. So I'm thinking, oh, once, you know, that everyone can go back into uni. How is he going to deal with that? But we'll deal with it at the time when it's going to happen. So how has your son been dealing with? Learning online. [Speaker 1] (28:49 - 30:15) It's actually something quite difficult for him to initiate. And I think for him, he didn't necessarily I don't know what the cohort of 16 year olds because they weren't they didn't have they weren't going into the next sort of provision in September. So he would have gone into college. So he wasn't given anything to get on and work with. But I always make sure that like he's doing his activities. So what he likes is music and things like that. So it's doing that. They're all online now. And I think he because the social anxiety is quite big. And I think it's the initiating going on there. But once he's on there, he's OK. But he's quite bored very quickly to sit there and go throughout. And I think with like the PDA the PDA side, like he would take a lot of toilet breaks, which he does whilst he engages at school and college. And that's something that he's always done. And those breaks sometimes they can be an avoidance because he's in there for too long. And then he'll come back in and then he'd miss out. And then then the anxiety kicks in and it's all very. Yeah. But it's interesting. It's completely new. And I think going forward, I think the right side is going to take a lot of getting used to because he didn't do it continuously over lockdown. But I think that will be. [Speaker 2] (30:15 - 30:33) And how do you keep motivated during lockdown? Because obviously it can get quite lockdown when I've spoken to lots of different parents. Some parents are dealing with it really well. Some parents are just not dealing with it well at all. How is it impacting on you, on your work and also as being a mum? [Speaker 1] (30:36 - 31:40) It is impact. I think being in the same space is like most parents. That's really challenging. I think initially I assumed that for my son it would be perfect. It's exactly how he likes things. There's no one around. He stays in the same place. But he's become very fidgety. I think managing his time. So I'm constantly not focused on what I'm doing because it's just sort of more focusing and making sure that he's. OK. Yeah, that he's OK. Yeah. And being able to take those breaks. And then when I'm in a flow at work and then I'm like, oh no, I'm feeling that guilt that I've got to focus on that. And I know structure would help, but it's just something that's not always easy to have in those moments. But I would say I think his mind has been more free to sort of wander. [Speaker 2] (31:41 - 32:44) Yeah, I noticed my son's like he's talking to you, then he's going up on a tangent. I'm just trying to bring him back to what we were talking about in the first place. But what he's finding difficult as well with the uni is the amount of emails that he's getting. And what's happening now is, you know, we've been seeing seed into the emails because he's he's working full time. And then he's got all these emails coming in from uni for the work he's got to do for the, you know, the courses that he's doing at night. So he's feeling really overwhelmed with the amount of emails. So I'm having to keep on track with them to say, Patrick, have you handed that piece of work in? Patrick, you know, they're going to get you a mentor so that you could, you know, all these various different emails that are coming through. And he's feeling a little bit overwhelmed with it all. So and then that's when the anxiety kicks in because he thinks he's stupid. But it's not that it's just that, you know, it's he he can only focus on one thing at a time, like whereas mothers and women, I would believe we can do a few things at a time because we have to. [Speaker 1] (32:45 - 33:31) Yeah, definitely. It is exactly it's exactly that. I mean, we have a parent account that I'd log in and I'd check and I'd be like, have you seen that email? And oh, yeah. And then it's like, oh, and then going back and having a look and stepping back and like, oh, yeah. It's it's quite which I don't I don't mind because he like he's here with it's sort of manageable in that sense and see it as an opportunity to sort of like just build that sort of just build on those skills to just have it continuous with me being nearby him. But yeah, definitely the emails I would then get one into my private email, like, oh, just to let you know. And then it'll be like, yeah, sort of things like it's pretty much the same. Yeah. [Speaker 2] (33:31 - 33:53) So with reference to parents, how do you help them dealing with setbacks? And I would imagine there'd be quite a few setbacks at the moment because of the way everything is delays, doing everything online, especially where special educational needs are. You know, like my husband's a barrister and he's having to do tribunals online. He just found it really stressful. Definitely. Yeah. [Speaker 1] (33:54 - 34:43) No, in terms of setbacks, what it is is so it's going back to giving that insight into how it does impact parents and then letting them know what they can actually do within those setbacks, because what you find is a lot of parents, you know, they they wish that standalone service to be able to support them. But it's just really allowing them to respond inside. So it's identifying where in those setbacks, they're able to make changes and impact. So that could be, you know, like in terms of guiding, like one thing is like blind spots. Parents are really good at identifying blind spots because there's a lot of professionals that don't necessarily see those things straight away and bring in that. [Speaker 2] (34:44 - 34:46) What do you mean blind spots? I don't understand what you mean. [Speaker 1] (34:46 - 34:58) So they could be things that a parent sees that the professionals don't see in a situation and they wouldn't have considered that as an impacting factor. [Speaker 2] (34:59 - 35:18) Parents listening because you've got to appreciate that we've got parents that are listening in that their kids have just been diagnosed. So they just start in the process. So this programme is also to help parents who are listening in, you know, to help them navigate because obviously we've got the experience. So can you can you sort of give an example so they know what to look out for? [Speaker 1] (35:19 - 36:56) Yeah. So a blind spot might be not taken into consideration a part of their diagnosis. So, for example, you could be sitting at a meeting and someone could point out that, oh, they haven't, like your child hasn't done this. And they would be and then a parent would be able to identify something that's been going on at home or something that they've spoken about with another professional that might be written in a document somewhere but not actually available in that moment. And the thing is with parents, they're like the main consistent thing through the whole process. Those things are really even though it might seem a very small thing, actually, like it can make a mess. It can turn things around. So depending on the parent, because there are parents that, you know, they might not want to speak up or they might not want to say because they, you know, concerned about impacting people's feelings. You know, or maybe the way they say it, they don't know how to say something that's perhaps quite complex in terms of, you know, without making people feel like that they don't know something impacting their pride. So it's just really sort of like just making sure that parents are able to mention those things and guide the process, really, because they've got a massive impact. That's where they have impact the most. [Speaker 2] (36:56 - 38:11) I think these meetings can be quite intimidating as well, especially when you don't know the system. So I always recommend parents take somebody with you. Like, for example, if I'm speaking up for another parent, you know, that's fine. But sometimes when you're speaking about your own son or daughter, you can get quite emotional because obviously they're your son or your daughter. So I always say, you know, make notes as well because sometimes you can go into a meeting and then you'll think, oh, I wish I'd have said that. I wish I'd have said that. So give yourself little prompts so you make sure that you get through all your list. And then I always also say back it up with a letter or an email because sometimes, you know, they'll they'll say something, some of these local authorities or professionals. And then you will come back to it and they'll maybe deny it or whatever. So at least if you have everything in writing, then you've got evidence for if you have to go to a tribunal. So how do you help parents to stay empowered within these sometimes difficult meetings? Because, as I said, they can be intimidated and they can be quite stressful. They, you know, they can really suck the life out of you. These meetings. So how do you help them to stay empowered? What tips and advice can you give? [Speaker 1] (38:12 - 40:35) So I would advise, firstly, to trust your instinct. And I know that's more easily said than done. Yeah, because definitely, yeah, definitely because there's no you don't go into these meetings. It's even though, you know, you're you know, there's something about the situation or what's been said and you know, that's how you feel. But then if you walk away and you don't address that, you know, there's that feeling of betraying yourself. So it's just really like I would advise definitely to step into that. Another one would be not to take on other people's emotions and things like that, because that can be quite challenging in those meetings where, you know, because we know that, you know, budgets are a concern for everyone. And if we take that on board, we'll definitely feel disempowered to make decisions because we will be going into that narrative and therefore going down a whole rabbit hole of all of a sudden like, oh, I've taken that into consideration. Therefore, I've missed those opportunities where perhaps that, you know, I could highlight it for my child. And then another one would be not really to step into the fear of things, because there is a lot of scarcity going on. So there is a lot of, you know, there's a lack of services, provisions, you know, postcode, lotteries, lengthy waiting lists, eligibility, criterias. You've got like goalposts that are moved at last minute. So it's very easy to sort of, you know, step into that. And I think what I would advise is really spending more time in joy, which is another thing that's quite difficult, but that's something we can work on is really spending time with your child because they're the most joyful moments. And through that, you'll be able to recognise like within your child, you know, what it is all about, because as parents, we're there to provide, guide and, you know, protect our children. And I think in those situations, the fear really makes us feel that that's not something that comes quite easily. [Speaker 2] (40:35 - 41:36) I think within these meetings as well, it's like they blame, oh, we haven't got the money for this. We haven't got the money for that. And I know there's been cuts and I know it's difficult, but for me, I think, well, I know you've had cuts and all the rest of it, but I don't care. I care about my son. I care about my daughter. And they're entitled to have the best education that you possibly can give to them. So you need to find the money from somewhere. So stick to your guns. Yes, like really push because they do try and play with your emotions as well. And I hate it how they go. And how's mum feeling? It's like, mum, my name's Anna, you know, when, you know, I don't know my wife, but I'm still Anna. So in your when we was having a chat, you were talking about a plan and the benefits of parents having a plan. So what would this plan look like? Again, for our listeners, listening in, thinking, oh, right, I need to have a plan. So what do I need to have in this plan? So can you give some advice on that? [Speaker 1] (41:37 - 42:41) So the plan is it's individual race. So it's like each individual child. So it's really it comes from the parent. And so what I do is that we'll work together on creating that plan, because then we'll be able to keep parents focused and see where they are and where they go with the situation, because a lot of us parents feel stuck, like, you know, misunderstood, unheard. And so it's really a plan that will allow you it's it's consistent. So in those moments, you're not distracted by the things that are going on, like, oh, actually, that's a problem in this area. We don't have that. But at the same time, if you're focusing on that and your plan is really to stick to if any decisions that are being made, you're able to be there and recognize, actually, this doesn't fit in what my plan is. So my my focus is not necessarily on, you know, like, I don't know, like conflict or just avoiding someone altogether. It's more about communicating it in a way that it becomes it becomes apparent. [Speaker 2] (42:41 - 42:54) You've got a goal and you stick to it. So say, for example, I came to you and I say, I need you to help me, Brenda, with the plan. So so how would we how would we kick it off? How would how could you help me? [Speaker 1] (42:55 - 43:32) So I'd help you by looking at what you've experienced currently and sort of picking all the little bits that, you know, all the things that are going on and taking the background. Yeah, get the background and get in a prior like looking at what the priority is, because, yeah, because there may be things that that you might want, not you might want, but it might not necessarily be what you need. So it'd be identifying that with your particular individual case and working to make sure that that everything that you do, everything that you communicate is in a way that aligns with that and aligns with your goals. [Speaker 2] (43:32 - 43:41) OK, so again, if people are listening in and they're interested to find out a little bit more about Apparent Pathway and about you, where can they find you? [Speaker 1] (43:42 - 44:05) Yeah, so you can find me on my website ApparentPathway.com. You can email me. So as I mentioned before, like Discovery calls, you can email me ApparentPathway at Gmail.com. And and I am on Instagram and I've got a Facebook page. So again, is it Apparent Pathway on Facebook? It is, yes, Apparent Pathway, yeah, something. [Speaker 2] (44:05 - 44:41) If you've if you haven't got a pen handy to write this down, don't worry. If your message is in on Anna Kennedy Online and our contact form, we can pass all the messages on to Brenda and you can check out the website and also the social media. So obviously you're juggling being a parent, you're juggling being a mom, juggling jobs, juggling everything that's going on. So obviously that can take a lot out of you. How do you let's talk about how did you relax before lockdown and how do you relax now, if any different? [Speaker 1] (44:43 - 44:57) Before there is, I'm quite a chatty person, so it's a lot of friends and catching up with friends. That for me was like my my like my respite. That was really important. I enjoy the gym, spinning classes and hiking. [Speaker 2] (44:59 - 45:00) Wow. Tell me a bit about that. [Speaker 1] (45:00 - 45:41) Yes. Hiking. I discovered that like, yeah, about three years ago. So I would join like meetup groups. And so we would just we'd go off and I did Mount Snowden. I wouldn't I wouldn't do that again. And I think I would do that. But I've never done a mountain before and I didn't realise how it's the endurance. And it was. Yeah, I just found it. It was it was lovely. I mean, it's lovely seeing people that like, you know, all walks of life and dogs and children and elderly people and everyone. And yeah, I think. Yeah, I've done. I've done it. That's just something. [Speaker 2] (45:41 - 45:47) How long did you take you to do Mount Snowden? Was it like a day or did it take you a couple of days? How does it work? [Speaker 1] (45:47 - 46:22) Oh, sorry. It was just a day. Yes. I think you started off at nine o'clock and then by five. So I think because there's there's routes and we did there's one route that wasn't as long. But yes, no idea. I did that. And I think I do like the coast walks. So I know your son writes the Jurassic Coast. So I do like that as well. And yeah. And we did. Yeah. And I do. Yeah, I like to do a lot of that. And then where I live, there's really beautiful which ways. And what I notice with my son and myself, I'm very much I like the longevity of it. Whereas he likes to just look. [Speaker 2] (46:22 - 48:08) And does he walk really quickly or does he walk? So because Angelo sometimes because I've got two sons. So Patrick likes to walk along the coast and he's very into the Jurassic Coast. It is holiday this year. And Angelo, we tend to go to parks because Angelo always going to need one to one support. He has no sense of danger whatsoever. So we go to various different parks and then you tend to bump into people that you've seen walk past hello and all that sort of thing. So we were saying as well just before we came online that it's a lifeline for me to go walking with Angelo. And the reason being is there's not a lot of things that you can do during lockdown with Angelo. And obviously he needs a stress buster because he's very energetic. So we do go on walks to various different parks. And I must admit, I didn't really do walking until about seven or eight years ago. But I really do enjoy it now and stopping off at the little cafe and getting a sausage sandwich or a lemon drizzle cake or whatever. It's an Angelo expensive. But what he was finding difficult was that when lockdown came you couldn't sit at the benches. They were all taped up and he was like looking and then obviously everyone was wearing masks and what have you. So it was a bit of a change for him. But he's got we can still go walking and you can still sort of get a snack. So, for example, we went to Burnham beaches yesterday, which is a nature reserve. It's really beautiful there. And we walked. We went to get our little snack and then there's a bench that we always go to and he knows it. He just goes to that route. We sit on the bench and we have our little drink and we have our sausage roll or whatever it is that we have. And so I am grateful that we still can do that because I think without that I would find it really, really difficult with Angelo. [Speaker 1] (48:09 - 48:38) Yes, no, I understand that. Yeah, with my son, we do. Yeah, it's just to go out and just breathing in the air and they're hearing the wind in the trees and stuff like that. And yeah, he so appreciates that. And the fact that, yeah, that is free and you just go out and you do it. I think that I'm doing it more, I guess is sort of incorporating it into the day. Really makes makes a difference because otherwise it's something that, you know, you get home and it's dark and you can't do things. So that's been really lovely. Yeah. [Speaker 2] (48:39 - 49:07) So where you're living, I'm always interested in diagnosis and how long it takes because I've been talking about it for years. And they're always saying they're going to improve the process, but people are still waiting two years, five years, ten years or however long it is. And again, it depends on where you live. Some people are really lucky they can get a diagnosis between six months and a year. So where you're living, what's the diagnosis process like? Do you know? [Speaker 1] (49:08 - 49:38) No, I'm not too sure. I think when I meet with parents at forums and things like that, they it varies. I feel that like schools, they have other creative ways of sort of supporting that. And I know that like for myself, my son had it quite a while ago and I can see the same challenges. So, yeah, I'm not particularly sure. But I think what I noted is that people are moving away from diagnosis and doing things that are more creative to accommodate situations. [Speaker 2] (49:39 - 50:04) They're doing everything seems to be online at the moment, doesn't it? Like meetings, diagnosis, a bit of everything's online. So if you could go back to when your son started the journey of going on the autism diagnosis when he was two and a half, three, four. What would you do differently and what advice would you give to parents now that we're just starting out on the process? [Speaker 1] (50:06 - 50:50) I wouldn't depend on individuals. So I wouldn't be like depending on one person to ensure that things happen. I would have more like more people, different perspectives involved. And I guess what would I do now? I would get the same. Trust my instinct. I think I would not feel that. Yeah. So dependent on one area is going to provide everything. I think just be comfortable with what I know and take it wherever I go and just seek what's available and not restricted to what people would say is available and what's not available and base my decisions on that. [Speaker 2] (50:51 - 56:06) Yeah. I think the thing is you need to do research, don't you? You need to research and become an expert in the special needs and disability system because it is a minefield. And, you know, and as we've said previously, always take somebody with you if you can find somebody from a support group or from a charity that will support you through the process because that's really, really useful. Again, just log everything. So when you speak to people, back it up with an email, you know, times and dates of calls made or and then keep everything together if you can in chronological order as well. So that if you do end up in tribunal, that you have got all of your evidence together and it's easy to find as well. So you're not like flicking through, looking through, you know, because it's all piggledy, piggledy. So I'll keep it on on file on your computer, whichever the best is for you to work to go. So I just wanted to quickly jump in and talk about born anxious clothing. So I am an ambassador for born anxious and a lot of children and adults do not like labels within their clothes. They find them irritating and, you know, can affect their senses. Like, for example, Angelo used to get a pair of scissors and cut big holes in his T-shirt to get the labels out, whether they were at the back of the neck or whether at the side. So Born Anxious was created by a lovely mom. Her name is Kelly, so Kelly Baucher, and she has a son that has autism and epilepsy. And she's created this clothing line and it's just growing and growing. And I'm really proud to be an ambassador for it. And so they have T-shirts, they have sweatshirts, they have jogging bottoms, they even do school uniforms. So if you're interested in checking out Kelly's clothing line, she even does rucksacks as well, backpacks. It's just building all the time. The clothing rages get bigger and bigger and she runs it from her home. So it's www.bornanxious.co.uk. So you say that again, www.bornanxious.co.uk. If you'd like to be a speaker on women's radio station talking all things autism, please contact me via the charity website. That's www.annaKennedyonline.com if you might like to write an article for me on the charity website. Very grateful for articles that people might like to write about, about living in lockdown, whatever the topic is. We have a resources page as well on the charity website. So if you check that out, lots of information on there. If you feel that isn't on there, that you feel that you might have a link for, please again send that in to the charity website. And we will update the link. The charity website actually is looked after by one of my charity champions, Marla. Marla is a parent to two young men on the spectrum. She's living in Croydon and she's doing a fantastic job on the charity website. Everybody that works within our charity is a volunteer, including myself. So nobody gets paid. And we're all very, very passionate about raising awareness about autism and about acceptance. So we have various different events. We've had to postpone all our events this year. We're so gutted that we haven't been able to do autism's got talent. We haven't been able to do the Hero Awards, but we are doing the Hero Awards next year. So we've booked the Chelsea Harbour Hotel already for November. So if you know somebody that goes the extra mile that you might like to nominate them, there's 12 different categories. So please check out our charity website. We have a specific page for the Hero Awards, which is called the Autism Hero Awards. So 12 different categories. So it could be a mom. It could be a dad. It could be a carer. It could be a business. It could be a reporter that writes particularly well about autism. So if you know somebody that you would like to nominate, we have seven judges that have the headache of having to choose three finalists for each category. They always have such a tough time. They always ask for extra time because they find it difficult. And we always have to provide a box of tissues because sometimes it can get quite emotional reading all of the entries. So if you'd like to enter somebody, somebody might be like Brenda for the work that she's doing. Please send in your entries to our Autism Hero Awards. So hopefully next year we'll be able to do all of our events because this year we haven't been able to. So obviously we haven't been able to raise any money. So we're trying to think of different ways to raise money for the charity. So just to remind you about our charity Christmas cards. Again, they're on the charity website and we will be having a raffle very soon. So we'll be sharing that on the website. So is there anything else that you would like to share for the last few minutes, Brenda, about something that you're doing, something you'd like to promote? Because this is your opportunity now to tell everybody about a parent pathway and about the work that you're doing. [Speaker 1] (56:08 - 56:28) Yeah, I mean, a parent pathway is really a service that I want to be able to support parents. So they feel empowered. So going forward, we can change society's views on that parents are just disempowered by everything that goes on. And we're actually quite powerful in what we can do to support our children going forward. [Speaker 2] (56:29 - 56:37) OK, so if I said to you, right, here's a magic wand. And where can you see your company going in five to 10 years time? What do you want to achieve? [Speaker 1] (56:38 - 57:13) I want to achieve other companies supporting parents to be more. I think parents raising children with individual needs to be more like just more awareness about what they do and their challenges and positive things about what they experience and how things are. And yeah, I guess going forward, I just want there to be a lot of that. And our narratives will change more around that we're not necessarily victims of the situation, but we're actually achieving great things for our children. [Speaker 2] (57:14 - 57:19) Brilliant. And again, if I give you this magic wand, what do you want for your son? [Speaker 1] (57:20 - 57:33) I want him to pursue his interests in film studies, creative writing, and I want him to just embrace all the experiences that life gives him. And yeah, that's it. [Speaker 2] (57:34 - 58:47) So I hope that your son achieves everything that you want him to achieve. And I hope that you get to the bottom of his difficulties that he's having at the moment with his seizures. I hope that your apparent pathway supports lots of parents that need support who are finding it difficult at this moment in time with Covid. And I hope this dreadful Covid-19 just does one because it seems to be lasting longer than we thought. And I just want to thank you so much for coming onto my show, taking the time out and sharing about your life and about what you're doing. Thank you, Anna. And the same to you. Your organization is amazing. Thank you. Thank you very much indeed. So again, don't forget, if you want to read about what Brenda's been doing, she's going to write an article for me. It's going to go on the charity website. So just to remind you, www.annaKennedyonline.com at AnnaKennedy One on Twitter, AnnaKennedy Online on Facebook and at AnnaKennedy OBE on Instagram. Stay safe. Stay strong. One day at a time. We'll get through this. Bye, everyone. Bye. Thank you.