Living With SMA

Transitioning into School Part 1 (Nursery to Primary)

• Spinal Muscular Atrophy UK (SMA UK) • Episode 27

Share episode

Welcome to our next episode, where we explore the exciting and sometimes challenging journey of transitioning into school, from nursery to primary.

In this episode, we'll be diving deep into the many aspects of this significant milestone in a child's life with SMA. We'll hear from Portia Thorman and Charlotte Lavelle, as we explore the social, emotional, and academic dimensions of transitioning to primary school.

We'll discuss the practical considerations of preparing for school, from selecting the right school to managing the logistics. We'll also explore the emotional challenges that children and parents may face during the transition, and offer strategies for coping and thriving during this time of change.

Through it all, we'll seek to build a deeper understanding of the importance of this transition for a child's growth and development, and how we can work together to support children and families during this exciting and sometimes daunting time.

So if you're a parent or caregiver navigating the transition to primary school, or a teacher or professional working with children during this critical phase, then join us for this engaging and informative episode.

Tune in now and let's explore the many dimensions of transitioning into school from nursery to primary.

#TransitioningToSchool #StartingPrimary #ChildDevelopment #LivingWithSMA 

THIS PODCAST IS NOT JUST FOR PEOPLE WITH SMA
This content is not solely for the SMA Community.  We hope this discussion will be helpful to everyone. ❤️

You can contact SMA UK on the following social media platforms ⬇️⬇️
▶ | INSTAGRAM:  https://www.instagram.com/sma_uk
▶ | TWITTER:  https://twitter.com/SMA_UK_
▶ | FACEBOOK:  https://www.facebook.com/SpinalMuscul...

If you do have any questions for Portia, Charlotte, and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk

Living With SMA disclaimer:
The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or its employees.  All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK.  The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.

Hi everyone and a big welcome to the Living with SMA Podcast. We talk about all things spinal muscular atrophy related, but topics discussed are not exclusively for individuals with SMA. So there should be something here for everyone. We also do things differently. For starters, our charity, SMA UK uses different hosts and everyone involved gets a final say in the creative process of making these episodes. We cut through the jargon and the content is accessible for everyone. All the stories are individual and we are committed to sharing as many different perspectives as we can for our listeners. So if you're listening to this and have a burning desire to talk about a particular subject, then please reach out to us on our social media channels or send us a quick email. And remember, no topic is off the table. If there is something the SMA community wants to talk about, this is the place. We really hope you enjoy the podcast. And please do connect with our charity and share your comments online and let us know what you think. From all the team at SMA UK, thank you for listening. Hello everyone and welcome back to a brand new episode of the Living with SMA Podcast. And we're in for a treat today 'cause we have got some brand new guests and we've got a brand new topic to discuss as well. So the topic of conversation, today, is we're gonna be taking a look of early years education and the enrollment of your child into nursery and primary school. But we're gonna be taking a little bit of a spin on things today, because we're gonna be looking at that process from a parental point of view as well. So hopefully, by the end of today's episode, you'll come away thinking, "I've either learned something new or it's sort of eased," 'cause it can be a stressful time when it comes to enrolling your children into school. Or maybe you'll just be able to relate to some of the stories we're gonna share today. So let's kick things off with some introductions. I might as well start things off. So my name is Ross Lannon. I'm a Lifestyle and Disability Blogger, as well as a Radio Presenter. And I'm gonna be the host for today's session. Now I have SMA type 3. And whilst I don't have any children myself, I have gone through the mainstream education through nursery and primary school. So hopefully I can still contribute along the way. But my next two guests are definitely more than qualified in this topic of conversation. So, Portia, can I start with you, by giving us a little introduction to yourself and your family life please? Hi, yes, thanks Ross. So, yeah, my name's Portia Thorman. Probably quite a few people watching will know me as Advocacy Lead at SMA UK. Before I had the wonderful job that I have now, which I absolutely adore, I was a Primary School Teacher. So I can see this process sort of from both sides with my teacher hat on and with my mom hat on, because my little boy lives with SMA type 1 and he's six. So we've gone through nursery and he's now in year one at mainstream school. And he lives with fairly complex needs so it's been quite a lot for the school to come accustomed to, shall we say, as well as Ez. I have, three daughters. My eldest daughter is 22, can't quite believe that. And then I have another daughter who is 19 and we had a big gap and I've got Martha who is nine and Ezra's closest sibling in age. So, yeah, busy household. Very busy. Brilliant stuff. Charlotte, your turn. Hello. So my name's Charlotte Lavelle and I'm mum to Elsie, who's nine years old and lives with SMA type 2. And she is in year four now at primary school, attends mainstream school and has done ever since starting. And when I'm not being mum to Elsie, I am a Secondary School Teacher. So again, bit like Portia, have the inside intel to some of it, which in some ways is helpful and other ways it can be... There's a little bit of a curse that you know a bit too much sometimes, but hopefully we'll be able to share some of that experience with you. Brilliant. So guys, I wanna start off, obviously, right back at the very beginning. We're talking sort of enrolling into a nursery here. So at what stage do we start thinking about, potentially enrolling in a nursery or a preschool? The age ranges can vary. So Portia, can I start with you? At what stage did you start thinking about it? Yeah, sure. So, I think you start getting the vouchers for nursery school funding when your children are three. I think, with special needs, you can start a little bit earlier than that, but my son was quite poorly when he was very little, so I thought we'd start him at three. So I started looking for nurseries when he was two. So quite early on, really, I reached out to a couple of nurseries, one of which was a private nursery. And it was quite clear from when I went to meet them without my son, just I had a sort of a face to face meeting with them, that they weren't really ready for... To sort of embrace the complex needs that Ezra brought with him. And I could tell that everything I said that they were like, "Oh yes, but, oh, I don't know about that." Or... And I just got the... I didn't get a very good vibe from them. So I then wrote to our... Probably, the closest school to us, actually, that had a nursery attached to it. And I wrote them a very long email, probably about two sides of a full sort of length, describing every sort of need that Ezra had and every sort of worst case scenario that there might be expecting a sort of mixed response. And I actually, the email I got back was from the headteacher of the school and he said... All he said was, "We're here to serve our community and we'd love to meet you." And that just... It was so lovely. So, yeah, so that was definitely my chosen nursery. So we went from there really. Great. And Charlotte what was the process like for you when it came to choosing a nursery? So, I think for me, trying to find a nursery for Elsie was in line with going back to work after maternity leave. But that also tied in to the same sort of time that we were starting to realise that things maybe weren't quite right with Elsie. And so the two became very much intertwined. I think, as Portia said, you can get funding for children with special needs from two to access nurseries. So, basically, up until she was two, she was sort of at home with grandparents. And then somebody at my school said, "Look, if you're dealing with disability, you need to make sure that she gets an education healthcare plan in place which you can sort of start the ball rolling. You can fill it all in." She was very adamant in saying how at my school that we must, must, must put the worst case scenario of everything that we were dealing with in there and then send that off to the local council. And whilst that was happening, I approached a bit like Portia, a private nursery but it was attached to the local hospital. So all of the doctors' and nurses' children went there and it was on my way to work. So I felt quite comfortable with approaching them. And I think, again, another sort of common theme is about this vibe that you feel. I think I got a very, very different vibe. They were very helpful. They just said, "Look, as long as she has this healthcare plan we can tap into the necessary funding. That will mean we can have her here and she could be safe and all her needs could be met. And we're more than happy to do that for as little or as as much as you want." So she started there just after she turned two, with a one to one for most of the time that she was there. And, yeah, it was a really positive experience and she stayed there until she was able to access the funding in the school nursery place at three. Okay. Because sort of... Probably, a common theme here, probably, for most parents is, enrolling any child into a nursery or a school for the first time is quite a nerve wracking... It's a big moment. It's big decisions as well. But I think once... When you've got a child who's got some sort of medical needs as well, it's an added pressure and stress to it as well. Is that something you agree with, Portia? Yes, definitely. And because Ezra had been so very poorly from being... From forever, it seemed up till he was sort of two, he was able to access continuing healthcare. So we actually had nurses at home overnight. So he has 12 hour care overnight with night nurses from six months old, I think. So for us, it wasn't as important to get the EHCP to go to nursery. Because what happened was, we... So like once a year, the funding goes to a panel and they decide whether we still get it for the following year. So when it went to panel when he was two, we said, "We are going to send him to nursery when he's three. So we would like a one to one nurse at nursery. So can you add that to his care package?" And that was approved. So because the NHS funded continuing healthcare, funded his one to one nurse at nursery, it meant the school didn't have to worry about the medical sides of things. So he could start without having an EHCP in place to get that funding, 'cause it came from a different pot, if that makes sense. So it was almost easier for us. 'Cause he could start with his one to one nurse, all his medical needs were covered and all the school had to worry about was his educational needs. Okay. And this sort of word, this EHCP, that sort of this is gonna crop up a lot. This is probably one of the core things that I think a lot of people say, once that's in place things are much easier. Charlotte can you sort of break it down for people who maybe haven't heard of that before, what that is and what that involves? So, basically, it's a document that means anything that... And it's a legal document that schools have to adhere to. So if your child is deemed as needing a healthcare plan, then whatever is on that documentation that's... People that contribute to that are initially you as the parents and caregivers but then it would really... They involve education psychologists, they involve all the doctors and the professionals that help your child. So physios, OTs, literally everybody gets a say in it and then they meet with the setting, whether that be a nursery or a school. Well, once the council have looked at it... I think the only thing that baffles me still is we had a very straightforward process in getting a plan in place for Elsie. Now whether that's because I had the inside knowledge of being a teacher and somebody saying, "Look, go with worst case scenario and never ever sugarcoat it. Put all the things that could happen, that you've been told could be an issue for your child with their condition. And then put that to the council." So ours was approved and it was never a problem, but I know of children that have got, I suppose, more severe symptoms and more severe types of SMA than Elsie who've been refused for that. So I know that it's very much a postcode lottery, if that makes sense, as to what you get. But the healthcare plan itself when it is in place, anything that is on there has to be a adhered to by the school. And if they can't meet those needs, then it's the local authorities job to provide the funding to make sure that that happens. Brilliant, thank you for explaining that. 'Cause I think a lot of people maybe wanting to know what that is or once they know that that's in place, that might make the process potentially a little bit easier as well. Portia, I wanna talk about some of the priorities that... What are the priorities in looking for a nursery? I know Charlotte mentioned the nursery she looked at, it had a hospital sort of nearby. What other factors do you have to consider when looking into sort of what education setting you decide? I think, we've probably already touched on one of them, which is that sort of can do attitude. That sort of, "Yes, we don't how we're gonna do this. We don't how we're gonna include your son, but we're gonna give it a go. We're gonna work together, we're gonna think out the box to come up with solutions because it's important that he's here." Just that attitude, I would say, is number one. I think secondly, to me was quite important, especially at that time when he was quite a poor little boy, that I could get there quickly. And so, yeah, closeness and, yeah, that attitude and that willingness to try different things. And, obviously, it has to be accessible to a certain degree. 'Cause even in nursery, Ezra drove his own a Wizzybug around, and just them accepting that in the classroom was a big thing, because the other nursery that I looked at, they said that would've been too much of a risk for the other children. But they were willing to teach the other children about him, about his condition. They were also willing to have me come in as a mom and I actually spoke to the other children about SMA and why Ezra couldn't eat dinner with them, why he needed a BiPAP mask at lunchtime. And just sort of normalizing it for them and answering any questions that the children had, and answering them at their level. 'Cause they're so inquisitive, age, sort of three, four year olds. Like "Why does he keep dwindling? Why can't he... Why don't his legs work? And why has he got that thing on his face? So just being able to answer those questions and allowing me in to do that was really special. Yeah, definitely. I think from my personal point of view as well, obviously, I can't remember a lot of my nursery process. I, prior to this podcast, I sat down with my mum and I was like, "I need to quiz you. I need to know what was my nursery process like." And because I wasn't diagnosed until I was two and a half, I was already enrolled in a nursery before I even... Before we even knew of my condition. So for me, I had already sort of settled and become fairly comfortable. But we knew something wasn't quite right because I was falling over a lot and things like that. Once I had my official diagnosis, I sort of said to my mom,"Did anything change in the way the staff were and the... "'Cause once you have the diagnosis, there's almost... There is that potential panic of something could go wrong. And all my mom sort of said to me was that once we had that diagnosis, she actually stayed in nursery with me 24/7, which we're talking... This was nearly 30 years ago. So I know times have obviously changed a lot since then, but yeah, having that one to one support. Everyone's different, obviously, but that's what worked for my mom's peace of mind. She wanted to be there to make sure I was okay. But also that took a lot of the pressures away from the teachers and other people as well. So, yeah, it was quite interesting for me to hear my story from my mom. 'Cause you don't often remember those little things. Charlotte, I wanted to ask you, how did Elsie cope with the transition from sort of being at home all the time to then being at nursery? Yeah, she loved it from the minute she went. She's always been, even though she's an only child, she's very very chatty, very sociable, quite tenacious. And I think, again, she was given a very young, very enthusiastic TA who just loved her. She became a very big part of our family life as well, this TA 'cause she actually wrote to me when I was transitioning Elsie to the school setting and said,"Look, I hope this isn't out of line, but I've built such a bond with this little girl. And I imagine you don't have a massive amount of people you feel confident leaving her with, but I'd like to offer to come and look after her at home, if ever you need any help or just to come and be a befriender and follow through with that journey with her." So she loved it. And again, a little bit like Portia said, I think there were times when I wondered, "Do I go in and speak to the other children?" But I think the nursery was so good at handling... They would let Elsie choose a partner first so she never got left out. And she had a Wizzybug like Ezra and they let her use it and they taught the other children how to not go behind the wheels. And there were a few bump notes given to the other children where she did maybe reverse over a few fingers a couple of times. But everyone was really accepting and understanding and that made a huge difference. Yeah, I bet. And was there ever a moment when it was... When you were considering which sort of education route to go down to and which location, was there ever a moment where you considered that the mainstream versus sort of specialist school? Portia you're nodding your head there. Yeah. And to be honest, I still wonder if I made the right choice because especially schools have swimming pools. They have like eight children in the class. They have more space, they have hoists everywhere. Practically, for Ezra, special school would be better for him, I think. And... But what he wouldn't... He's a very highly intelligent young man. He loves the social sides of school. He's got a girlfriend, it's quite serious. Love it. And I think that the special schools near us really are for learning disabilities. And he doesn't have any cognitive impairment at all. And I don't think the atmosphere would've suited him in a special school. Not to say that it wouldn't suit anyone living with SMA, not at all. But I think, for Ezra, that we made the right choice. But it's hard. I'll never know really, 'cause I haven't seen both sides. But, yeah, I hope we've made the right choice for him. Yeah. And then sort of moving on a little bit away from the sort of that transition from nursery to primary, Charlotte, what was that transition like for your family and did you manage to get any help with that through any sort of professionals as well? So, again, I think because she was already in the private setting, once we dropped her over into that for hours... The funding when she got to three and knowing that we wanted her to go to that school. And then the difficulty came then 'cause we thought, "Well, if we pull her out of the setting where she's really happy and send her to one where she's not, what are we gonna do? We can't go back 'cause this is the school we want her to go to." But when I was considering it, while she was still at the private nursery, so I visited the headteacher there at the time, just off my own back head, just got in touch with them and said, "Look, we live close to you. We'd like our daughter with quite severe physical disability to come to your school." I had done all the Ofsted reports and looked at all the other things and listened to other people that had children with needs that had gone to the school. So yeah, when I went to speak to them, they were just really lovely and they said, "Look, if you've got a healthcare plan in place, you can take her anywhere you want. It's sort of a golden ticket that you've got access to wherever so long as that setting can meet her needs. And it's not gonna cost an absolute arm and a leg to redo everything." And when I took Elsie around, the school's all on one level. They've got a hygiene suite. They'd had a boy with SMA type 2 there. Well, he was still there when Elsie joined the school. So I knew that they facilitated trips and things for that boy to be included. And, yeah, I just got a really positive feel about the whole place. And so when we did transition her, we did it a little bit at a time so she was still there. And she took her one to one from the nursery with her to the school for a little bit to make that transition easier. And so then she was sort of a constant. And she went on about five visits with Elsie and did several afternoons with her. And by that point, Elsie was quite happy and didn't really even realize that she wasn't there anymore with her when she transitioned. And I think the biggest thing that we had to deal with was sort of re educating all those other parents and children about what the wheelchair was, 'cause she then got a bigger powered wheelchair, which did more damage if it ran over anyone. But for the most part, again, a really positive experience. I think just because we communicated with people, I think that's the biggest thing. You can't be a wallflower. You've got to be their advocate so that, they're like that and see the other parents and the other children and explain. Yeah. It's really nice to hear sort of a positive story as well because there is... It's one of those situations, isn't it? Where, again, sometimes the struggle can be can be worse for others and sometimes it can be a smooth transition and it's not something that has to be feared. Sometimes it does work smoothly. And in your case here, that's that's great. And similar to my story as well, when speaking to my mum about it, she said my transition to... Into a primary school happened quite naturally because I've got an older sister who's two years older. She was already in the primary school and it was just a natural... "You're gonna go to that school because your sister's already there. We know that the access is okay." And funnily enough, the school that I went to, I wasn't actually... I was actually the first person in a wheelchair in that school. So, yeah, that was different. And Portia, can I come to you and sort of ask your process into primary with Ezra? What were some of the barriers that you faced? Yeah. It wasn't easy. They were very worried about the amount of equipment he needed and, strangely, very concerned about where they were gonna put it all, seemed to be a big problem for them. So he had his power chair but in nursery, it was a very big space, whereas reception was a much smaller class. Then they told me he couldn't use his power chair in the classroom, which I felt took his independence away a little bit. But I didn't want it to stop him from moving on in that school because, similarly actually to Elsie, his nursery teacher is gonna move up to reception with him, which I thought would be really lovely. But without a power chair in the classroom, he's restricted to his sort of supportive sitting chair, which they can push around. So I said yes for the time being. And I sort of picked my battles, if you like. They also said to me,"We can meet his needs in reception, but we might not be able to meet his needs as he goes up through the school, because we don't know what's gonna happen, basically." So I had to really focus on the here and now, I would say, and pick my battles. And it's still not perfect. We've got... They've put a hoist in the care suite now and they've... There was a period where, for example, he couldn't access the music room because there was a step and they've put a ramp up to there now. So we have sort of, as we've gone along, approached another problem and solved it. And we've had a lot of professionals around us. There's been a... There's a specialist teacher who works in a school for disabled children up near London. There's not many of them. And she comes down and advises the teacher on inclusion. And that helps a lot. But I think without those professionals supporting us, there may well have been barriers that were too big to manage. Because I think on paper when you look at Ezra, it's quite scary for a school. And I think with my teacher's hat on, if I was presented with a child like Ezra in my classroom, I would've been terrified. So I think I always remember that and I try and understand their perspective and just sort of tackle one thing at a time. But, yeah, it's definitely not easy. Yeah definitely. And Charlotte, you've sort of got both hats here, because as a parent but also as a teacher, what advice would you give to somebody, sort of any sort of tips for the whole transition into primary ed education? I think the biggest thing, and I've talked about it a lot, is the communication. But I think it's the way that you approach it. And I think Portia has just made a really good point. It's really difficult. But I think back to when Elsie was diagnosed, we were those rabbits in that headlight of like, "What does this mean?" And the information that we were given at that time was very different to the life that we live with Elsie. And I think for a school, giving them a worst case scenario diagnosis and an EHCP on paper that's got all the worst stuff in because you need it to say that, in case you need that support, that giving that to a school is pretty terrifying if they've not been familiar with that before. So I think as that parent it's the saying, "Look, I know this is what it all says and I know that this is scary but actually this is what life is like most days. This is what living with our child actually means. These are the things that they're really good at, that they can do. And we don't always get it right. And there will be things that will be difficult. And actually let's just talk, let's communicate. If there's something that you are going to do on your curriculum that doesn't naturally lend itself to a child in a wheelchair, maybe speak to us and give us enough of a heads up so that we can maybe think of a way around that or we could suggest how you do something else with them at that point that's beneficial to them so they don't feel like they're excluded." And I think that's the biggest thing I would say. It's very hard not to have a chip on your shoulder all the time when they need so much and the the world isn't easily adapted, is it? For people in wheelchairs etcetera. And I think we have to try as their parents as well to have that can do attitude rather than just getting really cross and angry and saying, "You're not doing this." It's trying to say, "Have you thought about this? Or what about this?" Yeah. Definitely. And I think, probably something that we can all take away from the chat today as well is, we've talked about the importance of that communication and also that sort of TA support. I wanna touch a little bit on that, that one to one support is vital. And there are battles when it comes to funding and things like that. But there's also the debate between having sort of a carer support or a nurse support as well. Portia, where do you lie on that TA support? Because I know personally my TA was like my rock throughout school. And I know Charlotte said the fact that Elsie's TA could go from nursery to primary was a massive help for your transition. So Portia, what are your thoughts on the TA support? Yeah. I feel really lucky because we've always had one to one nursing. In a way, we're also not lucky 'cause that means his needs are very very severe and complex because you have to meet a certain criteria to qualify for NHS funding for one to one support in schools. And I also know lots of families where this has been their biggest struggle, is finding and keeping that good one to one TA support or carer support even. And that has been the biggest struggle, schools recruiting somebody that can be reliable to do that. So it's really luck of the draw, getting the funding in the first place. I know lots of parents who have to fight really hard and I think knowing where to go for help for that... And I know SMA UK have helped lots of families, writing letters of support for funding for one to one and I know we've created a pack at SMA UK that can help parents who are going into this process, this sort of overwhelming process of applying for schools and for one to one funding. So, yeah, I'm afraid I don't have an answer for how to sort it out. 'Cause it really depends where you live, where your funding comes from, who the school is. There's so many individual differences that make finding and keeping one to one support, yeah, make it really hard for people and I'm incredibly lucky that we haven't had a problem with that. Yeah. And Charlotte, I suppose one of the benefits, I'm gonna look at this as a benefit, but I know every school is different and they have people who are good at their jobs and people who aren't. But I suppose with primary schools, you have to have a SENCo, isn't it? And you would think, generally speaking, when there's a dedicated person who's technically responsible for children who have sort of additional needs, that opens the door to help a little bit, wouldn't it? Yeah. So, as I said, the SENCo who was at the primary school we enrolled Elsie in was amazing. She was so good. She wasn't there for very long before she got promoted out of the trust. And since then, I think, we're on SENCo number five now. So it hasn't been the smoothest. However, what I will say is that the leadership in the school and the communication that I've had with that leadership has made it that, even when some of the changes haven't always been brilliant, they have listened to the things that we've said. So we had... Elsie's only had two teaching assistants in her whole time at school. The one that she had for a long time, I think they were worried that Elsie was becoming too reliant upon this person, that she was becoming very familiar with her, and that it wasn't enabling her to be as independent as she might be had she had someone different. So they tried switching this person, but then we had all these issues of manual handling, training wasn't updated, and then there were only certain times that they could go on these courses. And then the person that they replaced her with had quite ill health. So there were a couple of times when I took Elsie to school and was greeted by somebody that was quite unwell and I was like, "I can't leave her with you because actually respiratory wise this... She can't be around you." And her old one to one knew that. And so I would say we had only a couple of months of me tearing my hair out and saying, "Look, you can't do this to this child. And she was... There needs to be continuity. If you need somebody to do everything for you in terms of personal care and to be like a fly on the wall the rest of the time, they've got to be really intuitive and discreet and this person is none of those things." And so thankfully they switched her and we've then had the same one again since. And I'm not saying that that's the only option because I am now thinking, "Crikey! If that continues until we go to secondary school, we're then gonna have that problem on our hands when she comes to transition, of who will she get?" And I know it's a completely different ball game when they get there. But yeah, I think that continuity, the person, and you've said it yourself, it's just you've got to fit. If you need somebody to be your arms and legs and to advocate for you, you have to trust that person implicitly. Yeah. Definitely. And I wanna touch a little bit on inclusion as well within the school environment and the curriculum itself. Portia, what has sort of your school done to ensure inclusion? They're brilliant. They, the Ezra's one to one nurses, do a lot of transfers. I'll say that. He loves to sit in a normal chair around the table with the other children. And although that's not recommended by, probably, any of the professionals in the OT or the physio, the one to one nurses will make sure that he is included by putting him in that chair, sitting him on the carpet with the other children. And at the moment that's brilliant, but obviously that's not gonna be able to go on forever. So look, I try not to look too much forward to the future, 'cause there will probably be a time where he'll need two to one support to lift him and he won't be able to sit with the children in the way that he wants to. But an area for instance, like PE, which is obviously gonna be very difficult to include a child in a wheelchair in mainstream school, they do really think out of the box. If I give you an example, they were doing like aiming with a ball and so the children were running and they had to throw it in different directions. And the PE teacher had looked at and thought about it and had got sort of a half pipe, if you like, and had given this half pipe to Ezra so he could angle it and roll the ball down to his partner. And so they... I do find that they really do think out of the box. School play was another one. So all the children on the stage... Stage isn't accessible to a wheelchair and you wouldn't have been able to see him sitting down. So they got the gymnastic horse, the big horse, and they sat him on top of it with his nurse behind him, making sure he was okay so that everyone could see him. And he absolutely loved it. He was really the center of attention up there. So it really has... They do try and think out of the box. And I like the way that they don't worry about... They don't over worry about the official rules of what you should be doing with him. And they make sure he is safe, they make sure he is having fun and in an inclusive way. And at the moment it's brilliant. I'm looking forward to hearing the secondary school episode so I can get some tips for inclusion when they get bigger. Yeah. I know my mom said a lot of the time it's a lot of the... It comes down to the attitudes of a lot of the others, not only the other parents within the courtyard, it's also a lot of the staff and those little things can make the big difference. Yeah. Charlotte, how has your experience of inclusion been? So, I don't want to say things that will be negative, and I think probably a little bit like Portia, when Elsie was smaller, it was all a lot easier. And then she got to year two and the manual handling people went into school and were like, "Look, you can't keep doing this. You can't keep lifting her out of her chair. You need to do two to one. You need to do this, you need to do that." And things did change for us quite a bit then. And then obviously she was getting ready to have spinal surgery as well. So we had quite a lot of other things that meant things were changing for Elsie. And it was a difficult transition 'cause Elsie was... She just wanted to be doing what the other children were doing, like as with sitting on the floor with them. But I think the school overrates that she would get injured or that something would happen. And obviously I had to stop being all put,"Why aren't you helping... Why have you gone on a trip and she's just sat in a chair and they're all on the park?" But then they sort of said, "Well, look, if we lift her out and this happens, or that happens, who would you blame if you are not there?" And so I do understand and I think that they're worried, but what I will say is since those things have happened, the one to one who's remained constant, she, any trips they've done anything like that, she goes in her own time to vet the place to make sure that they can take the portable hoist and that they can do whatever. And she'll always say to me,"Look, are you happy with us doing cuff or sit to stand transfers? Because if you are, we'll do them." And they'll... If they think Elsie needs to take her manual chair because then she'll be able to get around more, even though she can't be as independent, they'll give us that option. So they'll say, "Look, we could take Elsie to this place on this trip, but she can't get around in Snappy, that's her big chair. Would you rather she came but be pushed in the manual or that she didn't go at all?" And our attitude is always, "It's better to be included, even if you can't be as fully as independent as you would normally like." So I think, yeah, as they get bigger it is something that does become more difficult. But again, I think if you've got the right staff, the right school and you are willing to show them what you're happy for them to do and walk them through it, then I think it's still possible to be included. Definitely. I think that's... I really do appreciate you both sharing your stories there. That is really important, and I think a lot of people will either relate or also just it's sometimes it's nice to hear other people's version of events. So it's definitely, definitely been helpful. Unfortunately, we are coming to the end of today's episode. On a final note, Portia, I just wanted to come to you 'cause I know you mentioned earlier on, that SMA UK do have some resources that can facilitate parents that are looking into enrolling their children into nursery or other schools as well. Can you just tell us quickly a little bit about those resources? Yes, absolutely. We wanted to design something to really help parents self advocate, I would say, because I found and I know other families have found, when you go to these schools, you find yourself repeating the same story over and over again. And, as I was saying on paper, it can look scary. But actually what we've created is some resources just to sort of get the school to understand and to know the child as a person, as who they are, their day to day, what that looks like. And we've provided with sort of some ideas for a typical day in school, the kind of things that the school would need to do. And just to make it all sound a lot less scary, I think is the aim of these resources. So it's a template that parents can fill in, all about their own child and their individual differences and in a really child friendly, school friendly way. Yeah, and there's also lots of information about applying for schools and all the different agencies, signposts to other charities that can help and give advice as well. So hopefully it will be useful. Perfect, brilliant stuff. And of course, if anybody listening or watching along today, if you have any questions or if you think there's anything we've missed out or just anything you wanna get off your chest in regards to the topic of enrolling your child into nursery or that transition into primary school, please do get in contact with us. There'll be an email address in the description of this video. So, yeah, don't hesitate in contacting us if you need any support at all. I just wanna take this moment to thank you both. Thank you so much for sharing your stories. I'm sure it's been very helpful for lots of our listeners today. So thank you very much for that. And, yeah, stay tuned because there will be a part two coming up in the near future where we'll be taking a little look at the secondary school process as well. So you don't want to miss that. Thank you for watching, everyone, and we will see you again very soon. Goodbye. Thank you. Goodbye. Bye. You've been listening to the Living With SMA Podcast. We hope you can join us again next time. But in the meantime, don't forget to like and subscribe, so you don't miss an episode. You can find out more on our website @smauk.org.uk.