Welcome to the Sunflower Conversations. My name is Chantal and I am your host. And today I am being joined by Hannah Jewell. So first of all, before I proceed, I'm going to give a quick visual description of myself. And then when Hannah begins to speak, she'll give a description of herself. So I am a female. I am middle-aged. I've got brown skin, long brown curly hair. I'm wearing a dark blue blouse, I've got silver jewellery on and I'm wearing clear framed glasses with bright red lipstick and I should say I'm smiling. I always forget to say that, so I'm smiling. So Hannah, thanks so much for your time today. Hannah is going to share her experiences of a mum of two autistic children and the process of transitioning from secondary school to college. So this is going to be a really interesting~ insight into what that process is like. Hannah, how are you? Hi, good morning. I'm good, thank you. I'm really well. brilliant. So could you please give a visual description of yourself? Yes, of course. I am a white female, I'm 36 years old and I have dark brown hair, I have a fringe and I have black framed glasses and I'm wearing a black dress and a Sunflower lanyard around my Thank you. Okay, so autism. Let's begin. Can you please explain what autism is? Just for anybody who is not really quite sure what it is and what it means. Yeah, of course. So I work with a lot of autistic children as I am an occupational therapist and I have a master's degree in autism studies. So a lot of the clients that I work with are autistic and a lot of their families are autistic as well. So yes, I work with lot of autistic children and autistic families. I am an occupational therapist and I have a master's degree in autism studies and I will soon be a sensory integration practitioner as well. I do have two children, they are autistic as am I and I would say that autism is a lifelong neurodevelopmental difference that influences how some people experience and interact with the world around them, it can involve communication and social interaction differences and it can influence interests and behaviours, how children experience things like routines, predictability and change. A lot of autistic individuals struggle with sensory processing difficulties, around 85 to 90 percent of individuals, so it can be a really significant part of an autistic person's experience. Someone might be less or more sensitive to things such as sound, light, touch, smells and movement but it can vary from person to person. I think it's really important to understand that autism is a spectrum and it means that autistic people can have very different combinations of strengths, differences and support needs. I think it's really important to remember as well as a mum of two autistic children that you can't necessarily tell if someone is autistic just by looking at them. Someone might appear to be coping very well, but there can be an enormous amount happening underneath. And I know we're going to talk a bit more about that in particular with my daughter. And she's a teenager as well. So there's lots of things that play with her. But also interestingly, the National Autistic Society have very recently just released a statement saying that autism is in fact genetic, which is a huge step forward. So I urge everybody to go and read their statement around that, which is on their website. Thank you, yeah, thank you. that's, there was even, this is another neurodiversity, but often there were comorbidities. I know that there was a report as well about ADHD that's just been announced this morning. So it's really great to see that there are so much insight and research being done into autism and you covered such a lot there in your description of what autism is. So thank you very much. One of the things that I was just ~ relating back to, I'm going out to do a work event after we've done this podcast. So I'll be in a public space and it's about, you said the sensory issues. I think some people don't think about the smells because I picked up the perfume and then I put it down because I know that that can be, and obviously I don't know who I'm going to come into contact with. So it's really great doing these podcast because you just every time you learn something else you know that you can help to hopefully make somebody else's experience a bit more pleasurable. So we are specifically talking about your about the secondary school transition from primary school today so we're going to focus more on your daughter who's the older one of your children. How old is she and could you describe some of her autistic traits? Yeah, of course. So my daughter is 17 and I think what I have learned through being her mum is that autism isn't always obvious to other people. I actually raised the possibility of her being autistic when she was around seven years old. And at the time I was laughed at by her teacher and I was basically told in essence that she wasn't autistic. She wasn't diagnosed or supported until she was around 11 years old. And that's basically because I'd paid for a private assessment myself funded it and it cost thousands of pounds and she was diagnosed with ADHD as well so like you said about the comorbidity of diagnosis like yeah absolutely but I think my experience with my daughter has really shaped my understanding of how easily autistic girls in particular and especially those who are coping well can be overlooked by professionals like she can appear very capable and independent but there are things that take a huge amount of energy for her behind the scenes and sensory processing is a big big part of her experience particularly around sound she can get very overwhelmed and she has differences with her communication and processing information changes and uncertainty can be very difficult for her so as we as we're talking about secondary school and that transition to college We can touch upon that more but yeah, she she has lots of strengths too. She's got very strong interests and passions and and when something matters to her she can become incredibly focused and she's very knowledgeable about it. Like she loves motorbikes. There is nothing she can't tell you bike. Yeah, and I think it's something I really want people to understand is that autistic young people you can look at someone and think they're coping brilliantly without necessarily seeing the amount of effort that's gone into getting them through that day. And I think that's important to say, as I'm describing my daughter and her experience, and that autism can look very different from one person to another. And I wouldn't want people to hear this and think that that's every autistic person's experience. My gosh, that's so important. That's crucial. The word individual, you used that when you spoke earlier and that is the essence of it, isn't it? Everybody is different. We all have our own individual and unique attributes, personalities, everything. So yeah, these podcasts are really, are just to kind of give a glimpse into one person's experience and to just open our minds to like... Okay, well, if this that's how somebody feels somebody else might have something similar or they might have something different.~ And I'm interested in looking. Did you say she has communication ~ difficulties? What's that? we were seen by a speech and language therapist and they have given her a diagnosis of a language disorder in association with autism. So yeah, can find speaking and advocating for herself quite difficult in new environments, although she's getting a lot better at that. And I'm very proud of that, that she, yeah, she recently started college and she was, she needed a laptop and she did go up to the correct team which was amazing in itself that she found the team but then she she advocated for herself and said that she really needed her laptop so this is a new thing that's starting to come out which is amazing. Yeah, so you must be very proud of her. So proud, so proud, because I was very worried, very worried, as we all do with our children. But yeah, she's showing me that actually there's no need to worry all the time. Well, I think especially with communication, I mean, communication is everything, isn't it? And there are so many different communication differences, you know, if you have a stammer, if you're nonverbal, delay, understanding processing information coming in, then it's going to be, you know, a delay in actually responding to what's being asked of you. So, at college, there's no mum at the school gates is there and so yeah ~ what was her experience at secondary school and what kind of supports were there for her then? So secondary school has been quite a journey for us. I actually had to take the local authority to tribunal because I was trying to secure specialist provision for my daughter. And ultimately we didn't get the specialist placement we were originally seeking. But we did end up with a one-to-one in a mainstream setting for year 11, which was really important in helping her access education around her GCSEs. And I think one of the things that people don't necessarily see is how much work can go into getting and maintaining the right support. The EHCP process, making sure that the EHCP accurately reflects the child's needs and continues to be upheld is not for the faint-hearted. It can be incredibly gruelling for any parent or carer. Endless meetings, meetings to discuss her needs, meetings to review provision, making sure that the EHCP is actually being implemented and meetings where I've had to advocate for her when something isn't working. But I also want to say that we have met some incredibly supportive professionals along the way. Her SENCO was incredibly supportive. We had a speech and language therapist who went above and beyond for her, above and beyond and attended additional meetings because she could see that support just wasn't really in place before her and even when her direct therapy sessions ended she continued to check in with us because she knew how much my daughter was struggling and she felt a duty of care towards her and she wanted to make sure that my daughter's communication needs were properly understood and supported so we were so grateful for her, so grateful and those professionals made a huge difference because they didn't just look at their individual area of expertise they really looked at the bigger picture for her and worked with me to make sure that my daughter was supported as a whole. So that support has been really useful and having people that genuinely understand her needs and listen to her, advocate for her, listen to me as her mother, and they're just willing to work collaboratively. yeah, ups and downs, I'd say. And I don't say any of this to criticize school or professionals, because we've had some really positive experiences, but I think parents can end up becoming the person who has to hold a lot of all the information together and continuously advocate for their child and it is difficult. It is so hard but it's something that we have to do and keep going with. But having an EHCP is one thing but making sure it accurately reflects a child's needs and that provision is actually delivered is a whole new ballgame and that can be an enormous amount of work for families. Well also, ~ as we spoke about comorbidities, you've said that you are also autistic. Depending on what that EHCP is for the child and what the needs of the parent is, mean, it feels like it's a huge job and it's a huge responsibility. Of course having a child is huge responsibility, but as a parent you might be facing your own challenges which might be... organisational, a myriad, I'm not even going to suggest what they might be, but to be able to kind of keep on top of your own life and just do the regular things of paying the bills, making sure you've got the shopping, the children are safe, they're clean, they're healthy, that kind of thing, that's hard enough. But then having to be this huge advocate and like you said, hold all this information and continually make sure that the need to be in met, it must be a very big strain emotionally and mentally. Absolutely, really is and we touched upon the fact that autism is genetic and these comorbidities are in play in my family. Both my children have been diagnosed with autism and ADHD and so have I. So absolutely and the things we're thinking about with our children about overwhelm and sensory sensitivities and executive functioning difficulties I too have and trying to advocate for them with my own executive functioning difficulties is tricky and I know that a lot of families are experiencing that and yeah it is really difficult, really difficult but we don't have a choice we don't have to do these things for our children. And it sounds like having ~ a joined up approach between the parent, the school and the SENCO. So just for anyone who's listening to this outside of the UK, a SENCO is what? special educational needs coordinator that works within the school. But usually, to be honest, there's not usually a separate SENCO. It's not usually an additional person. It's usually, I don't know, like in my son's school, for instance, it's a class teacher that has the SENCO hat on as well. And in my daughter's secondary school where she went, it was an English teacher who then had the SENCO hat. And it can be very difficult for them as well to be juggling all these different things and all these responsibilities. Yeah, so that was secondary school then we're looking okay choosing this at college what were some of the must-haves? We actually chose the college because my daughter had been attending a Saturday club there for about four years. She loves theatre and drama and it's really good for her confidence actually but she wanted to go to that college because that's where she's been going for years and she knows the layout, she knows where the toilets are and all the different things where the library is because she's been there, she's familiar. So that is the reason we chose that college, well she chose. She had already built familiarity with some of the people there as well, some of the staff that work there for her club also work there in the college as well, day to day. So in a way a lot of the transition work had already been done for us which was a huge advantage. When we went to look around the college properly though it was really important for us to go beyond looking at the course and the classrooms. We went up to the study skills section in the library, we spoke to the support team, we went to the bursary team to find out what support there actually was available for her. We wanted to know things like what she could access, what software she could access, whether she could go to study skills sessions, what the learning support was available, what it was like and what was available and who she would go to if she actually needs some help. I think something I'd really encourage other parents to do is don't just ask what support do you offer, ask specifically what the support looks like, who provides it, how your young person accesses that and what happens if they aren't able to advocate for themselves or they just don't know who to ask. I was reading through the National Autistic Society and they recommend speaking directly to a disability advisor or the SEN team, learning support team and asking about their staff knowledge and understanding of autism and their available learning resources and what additional support or equipment is available, because it is there, it is there. My daughter has a laptop funded through the college and things like that with all the additional software. So for us, it was a really important consideration was the ongoing support team. And it's not enough for me as a mum to know that the support exists somewhere. I actually need to know how accessible that support is and whether my daughter in particular will realistically be able to access that. So yeah, was one of the challenges we're sort of finding at the moment is on paper, her EHCP says about the level of support she should receive. But in practice, there doesn't seem to be the same level of one-to-one support that was available to her in secondary school. So that is one of our challenges. And in college in particular for us, it seems to be more focused on her being able to seek out support independently if she feels she needs it, rather than what's stated on the EHCP. And I think for us, that's a really important distinction because she might not necessarily recognise that she needs support or she might not be able to go out and seek it when particularly when she's feeling overwhelmed and be able to find the words and find the language to do that. So, yeah, for me, a must have is ongoing support that is actually genuinely accessible alongside staff that understand autism and understand individual students. because that's one of the things at colleges. My son went to college, he doesn't have any additional needs, but it's a real stark change from school, secondary school, because how the teachers speak to the students is very different. I remember him saying, ~ my God, they swear. And you call them by their first name and all of that. It's such a huge, huge change because you're really... are regimented at school. Yes, that's what you've done since you were ~ four or three if you went to the nursery. So you're just regimented and this is what school is and this is an education environment. And you go to college and it's just like, wow, what's happening here? This is so different. And they really seem to want to push home the facts of like, this is not school. We're not going to baby you. You have to be independent and I think if you haven't got any challenges, that's still quite mind blowing. But then to expect somebody who specifically needs extra support to then just be like, yeah, okay, fine. That's a big challenge. Yeah, absolutely. And it's the masking at play again. For instance, my daughter, I hadn't really heard much from her. Like, how was your day? Yeah, good, good. And assumed everything was going really well for her. And then the weekend just gone meltdown, a massive meltdown that to me felt like it came out of nowhere. And turns out she's four weeks behind on her written work and she didn't know where to access support. She didn't know what to do. She was just, yeah, really struggling. So I've sent some emails to the SEN team and to the staff and they're like, we had no idea. She's been perfectly fine. And I'm like, yeah, but it's masking. It's all internal and to the point where it just all bubbled over and she just couldn't cope with it anymore. And we did have a good weekend where like really supported her through, got her some extra tuition. And so moving forward, it's all good, it's just such a shame that it has to get to the point of overwhelm. Yes, yeah, yeah, ~ it would be really helpful if somebody could be checking in with her and actually sitting down doing a one-to-one, how is it going? Let's have a look at your work. And actually it's given her the opportunity to say, I'm struggling with this, or I didn't understand that, or whatever it might be. So it just goes to show that that parental, guidance and stewardship doesn't end with college, it continues doesn't it?~ you have to still be there being their main advocate and well done for getting that all sorted and getting her back into a more confident and comfortable place. Were there any sort of tools that... because we've spoken about what is available, was there anything that you were specifically like, right, I need to make sure that my daughter is aware of this and of that. Yeah, so when I went to the particular college years and years and years ago, more than I care to admit, and when I was there, in the library there was support staff there that could take your work and they would proofread it and things like that. So I feel like I was at an advantage that I kind of knew that that service was available. So she's been accessing that and extra maths tuition because she needs to retake her maths GCSE. So she can go in, but again, it's actively seeking that on her day off as well. And Yes. what 17 year old wants to go in on their day off and do extra math? But luckily she is willing to do that. So she's been doing that. She also accessed a laptop which has been really helpful for her, really helpful to be able to access that work. So definitely the laptop. But more than just tools, we're working on her independence, trying to practice how to get there, how to access bus services, navigate journeys over time. So hopefully she can become more confident and travel independently. So it's more, she's got tools to access college and an EHCP but it's more the life skills and tools to access life skills to be honest. Downloading the correct apps for the bus and so she struggles to tell the time. So it's just all of those tools to help her access day-to-day activities that we've sort of been working on at the moment. I want to just make sure she knows who she can go to for support to find out what other tools are available for her. And from an OT perspective, I'm also thinking about sensory and executive functioning demands of the college day and managing her timetable and moving in between environments and processing information and strategies on how to cope with noise and sensory input, organising herself, recognising when she needs a break. How do we keep her safe but build her independence without frightening her? It's a lot.~ trying to find a balance in between supporting her when she needs it and giving her independence to develop those independent skills, which is tricky. It's hard, but most importantly, I just want the college to understand rather her individually rather than just putting generic autism support in place, whatever that looks like. And the real test will be how accessible the tools are. and how responsive that support is now she's started. Yeah Hannah it sounds like you're doing a great job you're on it you're on it you. and your family where's the Sunflower? Yeah, absolutely for us we do. The Sunflower is really useful. It can communicate that there may be something going on that isn't immediately obvious, especially with my daughter or myself as well as an autistic female. And you can't necessarily look at my children and know that they're autistic or what they're experiencing in terms of sensory overload or anxiety or difficulties in processing what's happening around them. And I think it's really important with the Sunflower that it doesn't have to mean this person needs help or it simply means just be patient, give me a little bit more time, understand that there might be something going on that you can't see and that's particularly valuable for us as a family in places like airports, public transport, shops, busy environments where you don't necessarily have the time or the capacity to explain everything that's happening for you individually or for your children so for us it's just about creating a little bit more understanding and reducing the pressure to constantly explain ourselves. And do you find with the communication, allowing a bit more time for ~ that processing of communication, is that something that is supportive to you? Absolutely, absolutely. I definitely for myself, I need that additional processing time to really think about that, take that in and then think about what I'm going to say in response and I definitely need a little bit longer and so does my daughter. My son not so much, he has chronic anxiety around speaking and especially demand speaking but definitely for myself and my daughter, yeah, 100%. Hannah, thank you so much for your time to record this on a Friday morning in between school drops and school runs with your younger child. This is going to be really, really valuable to so many families who are navigating the education environment and reassuring as well to know that an experienced OT still has to do the research. You've referenced National Autistic Society several times. So it is tapping into the charities and those experts that are doing this on a daily basis and just really trying to glean ~ relevant information that will support you and your family, isn't it? Yeah, absolutely. And you're so welcome. It's been lovely coming and chatting with you again and really highlighting to other parents that they're not alone. They're not going through it alone. It's so difficult. It's challenging being a parent to autistic or ADHD children. It can be a lonely place. Sometimes you can feel really isolated. So I'm really happy to come on and talk about these things, talk about my experiences with my children. Also, if anyone wants to get in contact with me for any help or any advice or even just a chat, my inbox on Instagram is always open and I will link my email address below as well so people can contact me. in the show notes for your Instagram handle is OT by the sea, isn't it? Yeah, absolutely, and there's just full stops in between the words. But yeah, I can pin that below. Thank you very much. You're very welcome. Thank you for having me.