Living With SMA
Living With SMA
Ep 28: Transitioning into School Part 2 (Secondary school)
Welcome back to our podcast, where we continue to explore the fascinating journey of transitioning into school. In this special episode, we shift our focus to the next stage: transitioning from primary to secondary school.
Join us as we dive deeper into this significant milestone in a child's educational journey. We'll hear from Grace McManus (mum of Sonny who lives with SMA) and our host Ross Lannon who share their insights and experiences on the social, emotional, and academic aspects of transitioning to secondary school.
Building upon our previous discussion on nursery to primary transition, we'll tackle new challenges and opportunities that arise during this period. From navigating a larger school environment to adapting to new subjects and routines, we'll explore the practical considerations and offer strategies to help ease the transition.
Additionally, we'll delve into the emotional dynamics that both students and parents may encounter during this pivotal time. With the right guidance and support, we can empower our children to embrace this new chapter and thrive in their secondary school experience.
So whether you're a parent, educator, or simply curious about the transitional journey, this episode is packed with valuable insights and practical advice. Join us as we continue to uncover the keys to a successful transition from primary to secondary school.
Tune in now and let's embark on this exciting exploration of transitioning into school.
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 another episode of the Living With SMA podcast. My name is Ross Lannon and I'm gonna be your host for today. Now today's episode is going to be a follow on from a previous episode we've done where we are looking at the transitioning period into schools and today's episode is going to be a focus purely on the transition into secondary school. Now I'm gonna let my guest introduce herself in a second and I think today's going to be a great episode. I've just got the one guest today so we're going to be hearing a very personal account and it's going to be really interesting hopefully for you to sort of listen and hear all about their experience. So Grace can I hand over to you just to introduce yourself? Tell us a bit about you and your family please. Yeah. Hi I'm Grace. I'm Sonny's mum. Sonny's got SMA type three and transitioned into secondary school in September. He's one of four. He's got an older sister who's currently at secondary school and two younger siblings. So we're a busy household. Very busy indeed. So obviously today's podcast is all about talking about that transition into secondary school. So I feel like we should start at the very beginning in the sense of like any sort of change in any child or family's life can be incredibly children are incredibly vulnerable especially at times of change. So this is a really important podcast today and especially going into secondary school when your child is getting a little bit older and more obviously aware of things. So I want to talk to you about the sort of beginning you're obviously going from primary to secondary. At what stage do you start thinking about that transition into secondary? We were really led by the SENCo team in primary school. So we actually started the transition pretty much 12 months before the sort of moving in September. So it's been a really long process, really long process. And I must admit that Sonny was so so excited to start secondary school. He loved primary school but he was so excited to start that next journey. So yeah there was all the emotions, feeling excited, scared but predominantly he was really excited to start secondary school. So he had a good primary experience to sort of set those foundations and that routine of school. Yeah he had a really, really good supportive school. SENCo team were fantastic preempted everything really, really supportive. So it was them that encouraged the start the transition really early start meeting some of the teachers and getting to know the grounds of the school and really to see what sort of adaptions needs to be put in place for him to start. And in terms of school options was you pretty set on I know you mentioned Sonny's got siblings. So was you pretty set already on the school he was going to or was there much process of finding an appropriate school for him? Yeah he's got an older sibling who's one year in front. So she had just done her first year there. So we knew it was great school academically. We did look around. Oh wait we did look around but we did have our heart set on there. And obviously Sonny does have an EHC plan. So it's kind of find the school that suits Sonny and they'll make it adaptable for Sonny. So he got that the school that we wanted. And yeah luckily we'd had an older sibling that we kind of sussed it out before having to kind of venture everywhere else. But yeah it was a perfect school for him. So Grace obviously you said the process of transitioning into secondary was started early. And it was a lot of meetings and things like that. How did you come to sort of identify the SENCo lead and make those initial connections? So again we were led by the SENCo team in primary school. However we do have a good occupational therapist a really hands on occupational therapist. So obviously it's something she does quite regularly. So we were led by them we did have a lot of meetings. So they went to the school even without me being there. They must have done 20 plus visits. Before actually starting September to identify what needs to be done in order for Sonny to start in September and as independent as possible. That included toilet works changing the toilet over to electric toilet servicing all the lifts make sure there's electric doors. Yeah. And just general making sure that the electric doors are working. The ramps and everything were in place. So those works were due to be done over the summer holidays ready for when you start in September. I see. Okay. And are these all the things that are included in, you mentioned already the EHCP, the education healthcare plan. I imagine your plan was incredibly detailed and in your head you thought, we're set up and ready to go. Yes. Obviously we went in, saw the SENCo secondary score sheet. Don't worry, September, we've got the whole of the summer holidays to get all the works done so it doesn't interfere with other children around, they've got peer space. Obviously it was all documented for the EHC plan along with their council as well. Everything was set to go throughout the summer holidays ready for when Sonny started September. The day was fast looming and he went in and nothing was done. Wow. Okay. Talk me through that process of you signed off for summer, you felt great. This is the start of the new adventure. You go back that first day and then you realize nothing is in place here. Talk me through what is going through your head at that stage? My heart dropped. I actually got a call from Sonny, first day nerves were obviously high anyway, he's going to new school amongst hundreds of children in his year class that he's never met before 'cause obviously when you go to secondary school, his time is by six. Instead of just two classes of year six, for example, you've got six, seven classes of year seven. So lots of children he didn't know. He was anxious, but so so excited. And I got a call about half an hour in from Sonny in tears saying, nothing's done. He can't go to the toilet. My heart just sunk. Obviously we'd had no communication from the school to say nothing had been done. Unfortunately over the summer holidays, the SENCo team that the person who was the head of SENCo of the school had left and they hadn't passed over handed it over to a new member of staff.'Cause they hadn't didn't have one in place for September. She left and then nothing was done. So he turned up to the school where he couldn't go to the toilet. None of the doors were working. The hoist hadn't been serviced. He was terrified and we were terrified for him. It was just, it was shocking. It was shocking. Obviously we got him home. And it's not great 'cause the first day you don't wanna be known as the new boy. Two, three days, later you are all in the same boat, aren't you, with all the other children. So he was devastated. He really was devastated and scared. Obviously we brought him home and set up a meeting for the next day. And honestly it's been ongoing for, I think we got the toilet done in February and he starts in September. Right. Yeah. This is the problem, isn't it? These people don't often realize that this is why you start the process so much earlier because these are not quick fixes. These are not things that can just be altered within a couple of days. Yep. Unfortunately, there are processes and these things take time and money. This is why you start early, isn't it? Yeah, absolutely. And from my point of view, we thought we did do it early enough. I'm not saying this happens to everyone 'cause obviously normally speaking the SENCo team don't change over and had they not, would it be done? I would like to say yes, but, it wasn't and it was horrifying. It was awful. 'Cause unfortunately we didn't want Sonny move leaving out school and not doing his schoolwork. We still had to continue sending him in to school. And then every time he needed the toilet, we had to get a taxi to go pick him up, bring him home for the toilet. Well, and what impact has that had? Obviously on you as a parent, you are essentially having to be on call 24/7. It was exhausting. It really was exhausting. Obviously I've got three other siblings, I was worried that he's gonna need the toilet that when I was picking up the other children from school or I'm a housewife so I do all the bits and stuff at home, but it was just being on call. I felt like we couldn't do anything. It was a bit like being a prisoner in your own home. You're like, you're waiting for a call 'cause, he needs the toilet at least a couple of times a day. It was... It just impacted us all. We're all exhausted. I was in and out of meetings pretty much two or three times a week. The occupational therapist was the same. It was just nonstop. It was just constant. It was constant. But also you tried as a parent stay positive for Sonny that this is gonna be a good school, this is gonna be perfect. You're gonna meet friends and on the other side of it. So yeah, it was really tough and we had to keep trying to put a brave face on for Sonny saying, "Okay, don't worry about it. We'll sort it, it's not a problem." In the meantime, we there sending a 100 emails and ringing up the council and chasing up people for quotes and, 'cause unfortunately all the quotes, the actual just initial bit hadn't been done. It wasn't just a case of someone's ready to go in, do the job, it was, they needed to have three quotes from different places and the specifics and all that sort of thing. So yeah, it was really, really tough. Really tough. Yeah. I imagine that sort of emotional drain, that sort of, from a mental health and just general well being, that must be incredibly hard over a long period of time as well 'cause like you said, it's taken all this time to... Yeah. To get this in place. And it kind of drew Sonny's excitement away as well because when he was getting up, he was anxious going to school, going like, "what if I need the toilet? Like, sorry mate. And as much as we tried to kind of not show him that we were kind of worried and stuff, he was like, "I'm so sorry mom." I was like, it's you do not need to apologize. This is not you. So it just added so much more, which could have been such a lovely transition and exciting time for going into that next stage of life. It really was one of the toughest times that we've gone through over his whole educational years. Yeah 'cause I was gonna say, obviously the impact of you as a parent and as a family must have been huge. But also you have to consider the impact on Sonny as well. It's stressful enough adapting to change in a new school and having to go into education and focus on learning. But also when you have a disability, you've got even more to think about and worry about. Isn't it the anxiety? Absolutely. Absolutely. Luckily, Sonny is quite outgoing and he'd already said, "I know mum, people are gonna look at me and people are gonna have questions and I'm really open to that" And we did find that, again, that was a struggle with staff not having the knowledge. So Sonny came up with a really good idea saying, "How about I do a presentation mum, that explains my condition, but also what I can and can't do" So when they say, put your hands up for this, he can't put his hand up without sort of struggling at times. So he used a ruler. So all these sort of little things, he said, he did this presentation that they sent to the whole of the staff team at the school so that if they saw him in a hallway and he was sort of leaning to one side, that they could potentially just sort of lift him back up or if there's a question in class, they'd put your hand up if you need this or that, that they would give him a ruler or something to use. So he was really proactive in trying to help himself as well. And very, very open to all the new people that were asking questions and things. So that side, he's been like really, really strong, really strong. We're super proud of him. He's dealt with it as best as he can and he's done fantastic. All of his new friends now are people that he is met since he's moved to school. His other friends, he sort of waves to them. They're cool. Yeah, you can always see, you can always hear Sonny before you can see him. Love that. And do you feel like, I mean that story in itself is, what a guy. To take that initiative himself to say I'm gonna teach them myself how it should be done. Do you think that this is almost like forced his hand or like encouraged him to be more independent? It's almost like, actually, I'm gonna sort this out myself. Yeah, I mean we've been trying to for years to kind of get him to be more independent and do the things that he can because obviously, when you're at primary school, it's a lot smaller and it's more compact so you have more staff. You only have sort of one teacher that teaches you the curriculum. So at primary, it wouldn't be a case of him asking for his Lunch box or his coat. It was just kind of done for him. Whereas when you go to secondary school, you don't have that constant personal teacher knowing you inside and out that he has to ask for things he has got to think for himself. So it has been, it has made him gravis. It really, really has, but for the better. So sometimes these things are sent to try us, aren't they? And I think Sonny's coped really well considering and yeah, I'm seeing him turn from a boy to a young man. Yeah. And do you think as well, like obviously when you're in the moment at the time it's incredibly stressful, but obviously thank God you've sort of come, saw a bit of light at the end of the tunnel now and you're coming out the other end where things are a little bit more positive and settled, it's easier to look back on it and think. How did we get things done? We've done this. Yeah. Made... But also do you think this is almost sort of given him a realization of what life, with a disability could be like, because even as adults we are all... Life is not as much as you don't wanna say. Life is not easy for anybody. But when you have a disability, it does seem like a constant battle. It is, yeah. Even when we go out for weekends, we have to pre know where we are going so we know they've got the changing places, toilets or that the restaurant we're going to has got a ramp and things. But it absolutely has opened his eyes to I need to kind of preempt or plan things really in advance because it's not easy. It's not easy. And there's always going to be challenges. He wants to walk to school, but we've done the route on three or four occasions, but there isn't any dropped curbs. So there isn't anywhere for him to be able to travel to school. Driving with his friends, that is safe for him to do so without having to drive on the road for a bit. So we've had to go on this occasion we can't, but as you get older and you get your friends around locally, then you can start doing it. But it's absolutely opened his eyes to the certain hurdles he may have to get over it in the future. Yeah. Like even from my own personal experience, the whole going to secondary school, you think you are, you want to be as independent as you can and you don't want mom or dad there or anything. And you want to try and be independent. And in regards to the whole walking to and from school with your friends, I went through the exact same thing. I was adamant. I wanted to, 'cause my house was maybe like a 10, 15 minute walk from the school. And I was like, no, I wanna go in my wheelchair with my friends. And there was this one piece of road that it was on a bit of a slant and every time I'd go round the corner in my wheelchair, it was just, it was too sharp of a corner that I would sort of slip out into the road a little bit and it was dangerous. And we spoke to our local council saying, "Please, is there anything we can do? It's not safe. Is there anything we can do?" And they were adamant, no, no, no, we can't, we're not gonna be altering the road. And then we managed to persuade one councillor in the end to actually just come out instead of just speaking on the phone and... Yeah, come and have a look. Actually come out and have a look and experience it for yourself. Now, I will never forget this. My mom said, I want you to sit in the wheelchair and I want you to do that piece of road and see how you would feel experiencing it. So my mom got me out of the chair and she made this councillor sit in my wheelchair and go down the road. He skids straight out into the road and they changed it within however long it took that they agreed to it. Because sometimes it takes somebody else to actually stand in those shoes to understand. Absolutely. Yeah. Absolutely. Well, your mom's incredible. So I know obviously that the process of getting to this stage was very difficult. And I don't wanna dwell too much on the negativity. Yeah. But it's also really important that people hear this side of the story because it's not all sunshine and rainbows. No. This is the reality unfortunately. Am I right in thinking that you had to not only obviously speak to the school to get these changes put in place, but you had to seek external support from like your MP and other OTs and things like that? Yeah, absolutely. So we had the meetings with school and then we were sat down or I was sat down in a room and told, I just don't think that this schools gonna be suitable for Sonny. And I said, based on what? Because academically Sonny was one of the top 10 students with his grades. So I said, based on what, are you telling me that the reason why he's not right for this school is because you won't do the adaptions. And they were kind of cornered because they knew full well that they have to do the adaptions. So I went to my local MP and I felt like we were being discriminated against solely on Sonny's physical needs. And it was literally the next day that I got a chance to then meet with the headmaster who'd received an email from my local MP and the local council saying that the works need to be done within a certain timeframe and they were done within four days. And that had taken us. Wow. Four and a half months to get to that stage. Four and a half months of picking him up from school, taking him to the toilet, taking him back to school, just being on the ends of the phone really the numerous appointments. So we did have to go that step further, which we shouldn't have done. And we did get full apologies from the school. I think really they buried their head in the sand and thought it was a lot harder than what it was. But actually when they come to look at it, it's helped with toileting and a few bits throughout the day. It really isn't that difficult, once you know, I just think it's lack of knowledge. Yeah. Across the board really, and as much support we got from the occupational therapist, not everyone's got occupational therapists that can do appointments two, three times a week... Yeah. Every week, there's hundreds of children around that need their help, so, I just had to kind of pull from every angle I possibly could. Excuse me. And yeah, so we did, we got there and now Sonny has got full one to one support at school. Who does all the hoisting, 'cause again, that was another issue that no one knew how to work the hoist or no one had done a manual handling course. The staff were scared of the equipment. They looked at it and went, wow, no, I'm not doing that. But actually once all the training had done and the staff were coming to train, they went, oh, I didn't realize it's that simple. I just think it's lack of knowledge across the board. And Sonny was very, again he speaks, he will tell them, this is how you do it, I'll show you how to do it. So he takes that kind of pressure away, if you like, because he does it all the time at home. I was terrified when I first started using a hoist. I was like, oh my god, what is that? But I'm terrified that it's gonna go wrong. But it's so simple once you've seen it and done it a couple of times. Second nature, I could do it with my eyes closed now, but yeah, I just think it's a little bit daunting at first. But you get there and now he has a fantastic one to one support and he's very much made it clear he does not want someone with him the whole time. He wants to be independent, he wants to be naughty in class or whisper when he is not supposed to, all those sort of things any teenage boy would. So she comes in, sits him up at the start of class and then at the end of class and then he'll go off and do his thing. She'll do it for the next lesson. So it works really, really well. And she's going to be going on hopefully school trips as well, so. Nationally. Yeah, so I think we're almost there. We're almost there. It's just not... Yeah. Giving up and knowing that you have got the support of like you guys or speaking to you guys who really helped with me when I just needed to go ah yeah, I spoke to the team and they were just like, right, take a breath and write it down and speak to me. Let... Sometimes just letting out just majorly helps you... Yeah. Kind of go right, I've vented now instead to the family who are all in the same boat worrying. You vented someone else and you feel ten times better and you got that... Yeah. Clear head, to start again. So yeah. Definitely. And it's such like a crucial time in his life, he's in year seven, he's 12 years old. You've got all these other factors to consider, it's puberty, it's him just growing up and yeah, I'm so glad that you're seeing that light at the end of the tunnel now because nobody should have to experience what you guys have as a family. So it's just nice to hear that things are moving forward in a positive way. Yeah. Eventually. Yeah absolutely. And I think it's made us all stronger. It's made Sonny, definitely wiser. He's got a great friendship group now, he's striving, he's doing fantastic academically and he's getting the support for the bits that he needs, like the physical side of things he's getting the support for. So now he's just like... He was poorly yesterday. He was like, I really don't feel well, it's like, okay, well look, let's get some medication, let's get back up to bed. He's like, no, as long as I've got my Neurophin I'm going into school. I was like, okay So yeah, he's... Wow. He loves it. He really does love it and he's got, like I say, really good support network now. So just every day's different, isn't it. You just take each day as it comes. But he's looking forward to it. He's doing well and that's all we can ask really. Absolutely. Are there any sort of concerns that you have still in regards to like if he's in year seven now as he progresses through secondary school, have you got any concerns over the coming? To a new site when he is in year nine, so already I'm having meetings with the school now saying, right, we need that you've done up at the other side. So they are very aware. There is no excuses there's no changeover staff, it's documented. It's actually put into the EHC plan now as well that it needs to be ready for September 2025. So already they are getting building work. Builders coming around, getting quotes, so we are preempting it well in advance. I guess we've got exams coming up, but that's gonna be just normal anxieties I suppose. We have spoken to the staff already and they've said that potentially he could get a little bit of extra time 'cause he is a little bit slow in the writing. They have also supplied a laptops that he's able to contact his one to one throughout lessons. So. I'm really confident in his future. He's very strong minded. We all going through the tough teenage years at the moment. He is testing his boundaries a hell of a lot. And I think we get it more at home than we do at school.'Cause they said, oh, he's such a polite, beautiful boy. And I'm like, you wanna see when he is on one at home? That's certain. Yeah, no, I'm positive. He does enjoy some time out like certain PE lessons that he's not able to do. They do wall climbing and stuff. They set up a little SENCo area where they've got farm animals and stuff in. So he's going in to do that in the animal sanctuary to help birds. And he's just been invited on Monday to go and interview for a SENCo for the whole of the, our area. They're looking to employ someone so they want Sonny to be on the... Oh great. Student panel for the SENCo to interview them. So he was like, my transition was terrible. What are you gonna do to stop this from happening to anyone else? He's gonna be quite brutal. He's sticking up. He'll be there and he'll be saying his part. Yeah. He is gonna look at the experience as a positive and use it going forward. I love that sonny for prime minister. That's what I say. Absolutely. Grace. As a final question now, I want to ask you, what advice would you give to other families and parents out there that are at the early stages now of starting their transition into secondary school? What advice could you give? Take a deep breath. time, patience and just, yeah, have a good relationship with your occupational therapist 'cause they really will guide you and make as many appointments as you can they get to know Sonny and the surrounding of the school is never gonna be easy. It was in primary school going into secondary. It's another massive thing is just talk, be open and lean on people really just 'cause, it's so stressful. It's was such a worried anxious time. But yeah, best relationship you can get with SENCo and stay in touch and sometimes I've found that you'll send messages and you don't get reply. You send a message again and again and again and you will eventually be heard. Brilliant stuff. I know it's an incredibly personal story, so just wanna say thank you for opening up and sharing yours and Sonny's story today because I'm sure there are many people out there that can relate and sympathize in everything as well. Thank you for coming on, Grace. Oh, you're welcome. Thank you for having me. And we just want to remind you all as well, we have some resources on the SMA UK website if you need any help or signpost into other organizations as well that can help you with the transition into school. Please don't hesitate in getting in contact with us. Like I said, you can visit the SMA UK website, or if you'd like to email us, we will leave the email address in the, description of this video. There we have it. Thank you for listening, to today's episode and we will be back with another episode very soon. Take care. 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 at smauk.org.uk.