Raising the SEN-Betweeners: Nicole Bateman chats with Lisa Lloyd

In this episode of Conversations with a SEND Mum, Nicole Bateman is joined by Lisa Lloyd, author of Raising the Sen-Betweeners. Lisa shares her personal journey of raising two very different autistic children and the unique challenges they face navigating mainstream school settings when their needs don't quite fit the criteria for specialist education.

Key Highlights:

• Lisa’s Parenting Journey: Lisa discusses the emotional and practical realities of parenting children who fall between the cracks in the system—kids who struggle in mainstream settings but don’t have high enough care needs for specialist schools.
• The Hope Behind the Book: Lisa reveals her motivation for writing Raising the Sen-Betweeners and how she hopes it will offer comfort and validation to parents in similar situations, letting them know they are not alone in their struggles.
• Humour and Connection: Lisa and Nicole chat about the importance of humour in navigating the ups and downs of SEND life. Lisa shares how she uses her social media platforms, ASD with a G and T, to bring light-hearted moments to the SEN community while still being honest about the challenges.

Follow Lisa on her social media channels ASD with a G and T for more stories, tips, and relatable humour.

Follow Nicole on www.instagram.com/conversationswithasendmum for exclusive peeks to weekly episodes. Please do send feedback and rate this podcast to help it reach those who would benefit.

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Transcript

2:08

Hello and welcome to Conversations with an SEND Mum. I am your host, Nicole Bateman, and today I am joined by Lisa Lloyd. You may know her from her funny and engaging videos, ASD with a G and T. thank you so much for having me on, my love. That's alright. So, first of all, I would love you to explain what is your connection to the SEND community, please? I have two autistic children. Very different. I've got a boy and a girl. Both very different needs. One was advanced with their speech. One was delayed. One went to mainstream for primary school. One's gone straight to SEND. Very, very different. And I've also now been referred myself. So I think it's in our family quite a bit, to be honest. Yeah, often it's the way, isn't it? Parents, I'm waiting for. An assessment too, because you investigate, you support your child, don't you? And then you're like, I may be neurodivergent too. Exactly. And the more I look at my family, I'm like, Oh, that makes sense. they make you learn so much about yourself. especially us as women, we've been very good at masking our whole lives and learning to fit in our children have been amazing at bringing it out of us and saying, actually, you don't need to fit in. Being different's okay. yeah. And that is a key message that I wish all of society would, take on board. a hundred percent. I've spoken to you about this before and it's, trying to teach our kids and especially, teenage years and things like that, you so desperately want to fit in to what your class is like, the norm. And then your adult life, you spend your whole time trying to not be like everybody else. absolutely. So very excitingly, you've done so much, so much amazing campaigning with Send Reform and all of those things. But something very exciting is happening in a couple of days time, isn't it? On the 11th. of October. Can you tell us? Yep, I have a book coming out. I'm very excited! Yay! It is a book called Raising the Send Betweeners and it's basically about our journey that we've been on so literally from birth up until now. And our journey in particular of raising the children that are in between because When we first found out the kids were autistic and things like that, obviously I looked for books and everything to help us and support us. And there were fantastic books out there about autism, but not any that I could really relate to because my children, Finn was not non verbal. He was, you know, he was meeting all his milestones, but socially he really struggled. And There was just nothing out there about the battles of getting support, getting people to listen, getting people, you know, the schools to listen. And I really want this book to be for people that are feeling alone with this, because I think there's so many of us raising the ones that can't cope with mainstream, but also don't fit into SEND. And I think it's important that we talk about these amazing children could obviously achieve so much if they had the right support in place. Yeah, I think it's amazing. And, I really resonate with that title, The SEND Betweeners, and I think many will, because that's, that's my son, he finds it a bit tricky in mainstream primary, but he's kind of okay. When he gets to secondary, I think that that's, that's going to be too much. But then on his EHGP, it's mainstream, not, specialists. And that's what exactly our journey with fear and it was a real battle to get him into a SEND school for secondary. But the SEND school that we found is one that is actually for the in between children, which are practically unheard of. And this is what there needs to be more of because, you know, this school is for the children that are academically okay, but cannot cope in a mainstream environment. and that is so many children like that. Yeah, absolutely. if someone's listening right now, and they're like, okay, this is my child, like, I resonate with that. What, what kind of tips would you give to them to help them find somewhere that their child can actually thrive, if there is any in their area? Yeah, well, the first thing that I would say to anybody is EHCP. The EHCP is the thing that will make the world of difference at school, especially if they're at mainstream school and they need that extra support. You can apply for an EHCP yourself. If the school don't do it, you can apply through the GP. And the thing that really helped Finn at mainstream school for primary was the mainstream had an SRP, which is a specialist resource provision, and that made a huge difference as well. It's basically a classroom within it that the children with additional needs can go to get away from the noisy environment. You think most mainstream classes have got what, 32 children in them? That is a lot for an autistic child. So, the SRP allowed him to go there, he could stim he could let off some steam, he could work in a quieter environment, and I really would suggest to anybody to look out for those schools. Obviously, everybody wants to send school, but we know the reality is there's just not enough. places and not enough funding for them. But you have to keep fighting for everything, unfortunately. Yeah, absolutely. I mean, you said you were, what, 11 years into your journey? Yes. So with Finn, I, mean, again, he's saying about the children being the opposite. I've actually had the opposite with the support they were given as well. So with Finn, he was referred at two and diagnosed at six. So it took four years, whereas Poppy was, within a year she was diagnosed, and that is simply because she, she was nonverbal. And she showed all the stereotypical signs and again this is the problem with the kids that are in between that are verbal and give eye contact and all the sort of stereotypes that we know about autism. It's a lot harder for them to get a diagnosis, harder for them to get an EHCP, whereas with Poppy we got it very very easily, we were really lucky to be honest. Yeah, yeah, and that's, with your two children, you've had so many different journey with them and getting that support. Going right back to the beginning, because there might be some people right now, just in that state of desperation, not getting any support. How did you feel then, and what can you say to support those people? The thing that I want to say to them is that they are not alone. There are so many people out there in the same situation, but you need to find those people, and I cannot tell you how helpful it is to find the people that get it, and the people that understand, because it is so isolating. And, you know, I spent a good few years Beginning of the years feeling completely alone. I couldn't see friends, couldn't see family because it upset Finn too much. And like I said, we felt like we didn't fit anywhere. We didn't fit with the neurotypical families that we were around. We didn't particularly fit in with the SEND families and we just felt completely lost. So, I mean, online can be a horrible place sometimes, but it can be an amazing place as well for finding People that do get it and, look out for Send Coffee Mornings, things like that in your area. There's usually charity groups and stuff like that that you can find and they are a godsend. I mean, we were lucky that we had children's centres and things like that as well that provided groups and things for kids with additional needs. But I don't even know if the children's centres are going now. I know there's been so many cuts. Yeah, I think in a lot of areas it's, it's not, that's the thing, it's just heartbreaking, isn't it? And, you know, if you can't find a group Make one. And I know that sounds terrifying, but simply putting on a Facebook site in your local area. I'm going to be at this coffee place trying to meet other SEND parents. And I guarantee there will be some people that turn up because there's going to be other people feeling just as lost and isolated as you. Yeah. Yeah, absolutely. And I don't know about you at school gates that's a time when, so I gravitate towards the people that also have kids with additional needs and we kind of gather and so I know people from like different year groups because we just see, we just see each other, we get it. Yeah. I mean, I've done posts about this before where I'm, you know, I'm basically stalking people in the park when I can spot a child that's got like ear defenders on or something like that. Because you're so desperate for other people to understand and, you know, the school runs can be a thing, especially when your child is at mainstream. It can be a really depressing. Place you're looking around the, all the children running in up to each other saying hello. And you know, my child would never do that. I wouldn't engage with the other children. And you do feel heartbroken because you want your child to make friends and things like that. And a lot of the time that was more. My worries and insecurities, Finn was quite happy to not talk to them. Whereas I, I wanted that for him, and, but it is important to find those people. And trust me, there will be people at that school with children with additional needs, because there's going to be at every school now, really. Yeah, absolutely. And it's for me, my daughter, she's younger and the difference between my daughter, who I can literally send in. I don't even speak to the teacher. And then with my son, you're like, this has happened and this happened. And then you see, like I didn't until she's in year one now. So until a couple of years ago, then I saw that difference more because. You just kind of are used to, okay, I've got to follow up with this, or I've got to do this, or I've got to, and then when you see that difference, you're like, wow, okay, for some, it's just send them in, see you at three, three o'clock, and that's done. So I've, seen this difference more and more just over the last couple of years since my daughter has just gone to school. And yeah, there's, there's a lot of extra things that you have to do. In order to get that support for your child. And I, I wish it was different. Yeah, and I think that's the thing for all of us. It sort of becomes the norm, doesn't it? We've having to fight for everything and like, and really that shouldn't be our norm. You know, life is hard enough as it is, especially for our children that already have additional needs and grown up in a very neurotypical world. Yes. And on top of that, we have to prove everything, we have to fight for the bare minimum. The bare minimum being a school setting that's correct for them. I mean, it sounds crazy when you think about it, that, most Parents of children that are neurotypical would never even think that they wouldn't find a school place for their child, that they may have to travel an hour to get there. And these are things that are the norm for us. And so many parents are obviously being forced into home educating because school is just not correct for them. And that should never be something you're forced into. It should be something that's a choice. Definitely. Absolutely. So, for the people that might buy your book, what is your hope when they read that book, when they have it in their hands? What do you hope for? I hope that they don't feel alone anymore. I hope they stop feeling guilty. You know, I had so much. guilt in the beginning and kept thinking it was my fault, something that I had done, and I don't want anybody else to feel that way. I'm very open and honest in it, and I've talked about things that I'm very ashamed of, to be honest. Things, because I'd, I'd never, as far as I was concerned, I'd never even met an autistic person in my life before. And you're sort of, you've thrown into it. There's no rule book that, that you can follow, even other parents of autistic children may give you advice and things, but whether it would work for your child, because they're all so different. And I just want people to be able to see, like, you know, the funny side of things as well, and also feel that they are not alone in this. That is the main thing, because It's so isolating and, all the thoughts that we have privately by ourselves, I've put that down in my book and, I just hope that it reaches people whatever part of this journey they're on and, you know, I've had a couple of my friends who've got high care needs children as well that are non verbal. And I've actually got them to read a couple of my chapters because I was unsure whether this would be right for them, because of obviously raising children that are in between. And they came to me sobbing and said it had reached them, they could relate to everything and they didn't realise how similar our journeys were, even though we've got very, very different children with different care needs. And I hope that it opens that. those discussions up a little bit as well and makes people realise that actually we're all in this together and we can all relate. Yeah, absolutely. That's, that's really interesting. And it's good to get, those different opinions because all our experiences are different, but then there are some core factors that bring us together in how. So you say, you've got the vulnerable bit, you've got those feelings that we don't necessarily share with others, but you've also got some of the light relief. And that's what, great about your, channel, the ASD with GNT. That's what. That's my love. Do you use humour to kind of, is that just something part of your personality or is it something to help you cope and process with things? I'm just interested. It's a bit of both to be honest. I mean, I don't want anybody to ever look at my page and think I don't have down days and things like that because oh I do and I've sobbed and and I go through getting stressed and I shout at the kids. So I'm not just. Jumping around happy all the time, but humor does get me through and especially, you know, some days out are horrific, let's be honest, and you think, why the hell did I leave the house this morning, and, mistakes I've made, even from A couple of weeks ago I posted that we went to the fair and I just thought it'd be a good idea to take Finn on the waltzer. Yeah. Definitely not a good idea at all. Don't do it. No. I thought he loved spinning around. He's gonna love this. Yeah. Absolutely not. Yeah, so he ended up having a meltdown on the ride and obviously during that time it was awful and I was panicking. We couldn't get off of it and it was Terrible. But, I can laugh about these things afterwards, and I think we have to, to get by, because otherwise it can be so depressing, because like we've spoken about, we're fighting for everything, and, schooling the government, and It can get you down. It can really get you down. And I think we've, we need that laughter and to be able to laugh at some of these things, because, it's what gets us through, hindsight is a brilliant thing. I think, so many times I've made so many mistakes along the way. And then afterwards I thought what was actually going through my head and why I thought that would be a good idea. But yeah, just trying to find the funny side of things, things that can sometimes be quite embarrassing and stuff like that as well. And you think, do you know what? We're only here once. Like, we just have to laugh it off and get through it somehow. Yeah, you need that release. You need that, it's good for your nervous system to laugh as well. So if you're in flight all the time, you need to get that laughter in there and just enjoy it. So. Your book, when's it out? So it is out on the 11th of October and it's going to be out on Amazon First. Possibly some bookshops soon. Yes, definitely on Amazon First. Excellent. Definitely go and follow as SD with the g and t. It's got underscores, hasn't it? What is it? Yes. It's a very annoying, a very annoying title to be. Yeah. As SD with a GT, with underscores in between. So go and follow and then you'll see, and Lisa will be, and I'll post, you know, when, when it's out in a couple of days time on the 11th of October. And thank you so much for chatting with me and sharing. Your ups and downs and what you hope for the book. So, Yeah, thank you so much. I really appreciate this and, I would love to get people's feedback. So please do, if you're getting the book, please do put some reviews and share your stories and things like that as well. And yeah, I just hope that it goes out and reaches a lot of people that might, want to read it. Be a bit more understanding of the kids that don't necessarily show but actually they, are going through struggles as well. Yeah, absolutely. And that, that's a good point. It's like actually it'd be interesting and useful if you give it to, teachers and, medical professionals because I'm sure many of us have stories where maybe the understanding, if someone, you know, doesn't have a neurodivergent child or isn't neurodivergent themselves, sometimes the understanding isn't fully there. So yeah, definitely. You know, we've heard things like mild autism things like that before and there is no mild. Very much so. So I hope it just opens this up a little bit more gets people to see the reality of raising the sen between us. Yeah. Absolutely. Thank you so much, and thank you for listening to this week's episode of Conversations with an SEND Mum. A new episode launches every Wednesday, so I will see you next week.