SEND in the Spotlight

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  Nuala McGovern: Hello, Nuala here with SEND in the Spotlight.

  (Theme tune)

  This is where we explore why the special educational needs system is so widely considered to be broken and how it might be fixed. We are also creating a space where families can share their experiences of raising a child with special educational needs. Now to help us do that this week, we have Andy and Gaz from the AutismDadCast. They, probably like you are thinking about Christmas and the joy, but also the challenges it can bring for your children with SEND. It can be a time of sensory overload and general overwhelm, plus changes to routine and possibly health and care arrangements. The dads will share how they plan to make it all a bit more manageable this year.

  Also joining us, Katie Ghose from Kids Charity, who is a gold mine of information on what can help you and your children across the festive season…. including the value of a half-wrapped gift.

  You will also meet Elvi and her mum Sam. For Elvi its Christmas 365 days a year. We're going to hear how Sam and Elvi bond through the trappings of Christmas.

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  But to start, I want to take a moment to say thank you for all the messages following our last episode on EHCPs - Education, health and Care Plans. I think it's just brilliant that so many of you have found us and also that you have taken the time to get in touch. The SEND in the Spotlight inbox is [email protected].

  Our regular contributors, actors and mums Kellie Bright and Anna Maxwell Martin have been reading some of the messages with us. Kellie's up first.

  Kellie Bright: Here's one comment left on the Woman's Hour Instagram… “The rules and laws surrounding EHCPs are completely ignored. We have been told that our local authority have broken the law six times this year alone on my daughter's case, but it doesn't matter. They do for everyone all the time. The laws might as well not be there. The system is entirely broken and not fit for purpose.” And Sarah says on email, “I'm fortunate to be able to tackle the immensely complicated and often obstructive system in order to get an EHCP. Do I think it was worth it? Yes, in as much that I got my son, the support he needed to achieve his GCSEs, but as for whether it was worth all the anxiety and stress that I and my son had to endure to get to that point, I’m doubtful.”

  Nuala McGovern: Also, Holly was in touch. She says, “I've been trolling through Facebook this evening, as I often do once the kids are in bed, decompressing from the bedtime battle. I've seen numerous clips this week from the podcast, and I wanted to say thank you for drawing attention to the issues and battles SEND parents face every day. I sit here having received my son's final EHCP draft today. I wept when I opened it. It's not perfect. But it's a start.” Well, I'm glad you're feeling hopeful Holly. I want to turn to Anna Maxwell Martin, she brings us a comment that came into her via Instagram.

  Anna Maxwell Martin: “Hi. I've recently set up a group for parents of SEND Children in our area. It's literally just a chance to meet up once a fortnight informally, and to support each other through this crazy ride of raising individual children. I've had parents turn up who are at absolute breaking points and have nowhere else to turn. I'm not a specialist. I don't always have the advice they need, but it's more about people knowing they're just not alone.”

  Nuala McGovern: Thanks very much to Anna for recording that voice note on the go and also to Kellie. They're not in the studio with me today as they're both shooting scenes for their other jobs that they have.

  I also want to bring you an important different perspective from a post on the Woman's Hour Instagram account. It says:

  “We have families getting private diagnosis and paediatricians telling the LA a child needs x y and z, expecting the tax payer to fund this through their plans. When the school tries to contact the paediatrician who works at a large well-known provider of private therapy, they are unavailable to discuss in a multi agency meeting. How do schools and health services action this if the professional isn’t available for comment - as the private medical professional wants paying to talk to anyone! It’s very frustrating.”

  So says that message.

  Well, if you would like to get in touch, email, [email protected] to find us on Instagram it's @bbcwomanshour.

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  With me in the studio are Andy and Gaz, they are dads, they are friends. You might have heard them already, co-hosting their own podcast, it's called AutismDadCast. Welcome to both of you.

  Andy & Gaz: Thank you very much.

  Nuala McGovern: Really good to have you with us this week. So how did you meet?

  Andy: Whoa.

  Gaz: Go on.

  Nuala McGovern: Andy.

  Andy: Yeah, I'll take this one then Gaz. We’ve both got autistic children. We were being bombarded, well, I personally was being bombarded with reels and signposted to different accounts regarding autism. Lydia's mum at the time noticed that Gaz had been sharing some of his personal experience of being an autistic father and it was the first time I could relate to somebody who was similar to myself basically.

  So, we exchanged a few messages and then out of the blue I just messaged him saying, “look I've got a place at the Paris Half Marathon in March do you fancy doing it?” and you weirdly said “Yes”. And then the first time we ever met was actually at Birmingham Airport, half past midnight in Costa Coffee, where we just had three hours, just unloading and realising that all the things that we were concerned about or felt were unique to, to our personal situation was actually being felt by another father.

  Nuala McGovern: Your daughter is Lydia, Gaz's son is Thomas. What made you Gaz take up this kind of crazy offer?

  Gaz: Uh, honestly, I've always been one of these people that I just, I like control of my life, so we always just kinda say no to everything and I don’t know why something about this and the fact that it was a charity for autism…

  Andy: Mm-hmm.

  Gaz: And, and out of the blue, Andy, who I had never met in person, said, “Do you want to do a half marathon?” I just went, if I don't say yes now, I won't do it, so…

  Nuala McGovern: You know, I'm kind of fascinated Gaz that you talk about that you're somebody who likes control in your life.

  Gaz: (Laughter) I know where you're going!

  Nuala McGovern: You know, because the one thing I am learning throughout this podcast and these conversations on SEND is that you kind of have to go with the flow at times.

  Gaz: Yeah, a hundred percent. You have to go… That's something I'm, I'm learning very quickly as an autism parent. Absolutely.

  Nuala McGovern: So, how's that working out for you?

  Gaz: Yeah, it's getting better. It's getting easier.

  Andy: (laughter) Good days and bad days.

  Gaz: Yeah, yeah, yeah.

  Nuala McGovern: Well, you know, I noticed on your podcast, which I loved, so energetic and honest, and each week you chat about what's coming up in the coming days, and of course now you have Christmas coming. For some families it's the highlight of the year. For others, it's something that is looming, perhaps slightly with a sense of dread.

  Why can Christmas time, the end of term if your children are in school, (that's a conversation we've been having of course), or at least, that great gear change that can happen when the holidays start, be so difficult do you think?

  Andy: I think there's two aspects to this, isn't there? There's the, the aspect of the child itself trying to regulate them and make sure the environment that they're so used to and accustomed to remains the same. And then there's, um, as adults, there's a pressure, a social pressure, if you like, that Christmas has to be magical. It has to be done traditionally or a certain way. And unfortunately, those two worlds collide massively when you have a child that's SEN, or in our cases autistic. Um, so it does produce a fear factor, I would guess, or a sense of dread.

  Nuala McGovern: Is that fair? Gaz?

  Gaz: That’s 100% fair. Yeah, absolutely.

  Um, you know, you're sticking a tree up in your house, and your lights and the candles and everything's changing, And we all have expectations, don't we, about what we think Christmas is going to be like.

  Nuala McGovern: And it's often about, I mean, many people will say Christmas is all about the children.

  Gaz: Mm.

  Nuala McGovern: But, but that, that's a different scenario when you have a child with SEND.

  Andy: Very much so. You open your phone and you can see all your friends are posting the highlight reels of how amazing their Christmas is, and you want to try and still have a bit of control and have that with your family, and ultimately, you find out the hard way that by doing that, at the end of the day, you feel very kind of deflated, disappointed, and slightly guilty that you may have not given your child the Christmas that you thought they deserved or needed.

  Nuala McGovern: Yeah. Gaz, you, you're feeling that one?

  Gaz: Oh, big time. I think the expectation thing, again, if, if you kind of reflect afterwards if you like…So our first Christmas was horrendous!

  Nuala McGovern: Why was that?

  Gaz: It was because we were basically, I mean, I've got a video of me where I'm trying to force him to open his presents. He's in the middle of a meltdown and I've, I'm, I'm trying to force him, I'd forgotten I did It, to go and see his presents. Because I just thought, autistic or not, when you see your presents, you're going to be happy. And it, and it didn't work.

  And essentially if you reflect afterwards and you kind of go, who have I made this about? It's very easy sometimes to realise, I thought I was doing it for my kid, but I wasn't. I was doing it because I wanted my kid and me to have this wonderful magical day.

  You could still have that magical day, it's just going to be slightly different to the one you might be used to.

  Andy: And it may take a couple of years or a couple of Christmases to work out, right this worked, this was a complete failure. I won't do that again. So it's kind of trial and error and hopefully after a couple of Christmases, you work out what's right for you. And secondly. You do grow a set of thick skin and you're very much like, okay, I don't need to go visit that person. I will do what's right for me and my family this Christmas.

  If my child wants to stay in pyjamas all day, so be it. I'm not going to force them to wear a flashy Christmas jumper or anything along those lines there.

  Nuala McGovern: And you know, Gaz was talking about that disconnect, which shall we say, between what you wanted and what your child wanted. I feel incredible compassion for the parents. You know? Like I'm sure there is a disappointment there that you have to manage in yourself while also trying to help manage a small child's emotions. Gaz?

  Gaz: Yeah, a hundred percent. I mean, my first year we were sobbing.

  Nuala McGovern: Yeah?

  Gaz: We were sobbing and it was just because it was that disconnect between the one we expected to have and the one we actually had. But you very quickly learn, a little bit like what Andy said there, we stripped it all back for the second time….And then incrementally, as the years then go by, you add a little bit more of Christmas in and you kind of find your own way.

  Nuala McGovern: Mm-hmm.

  Gaz: And you just end up having a Christmas that's unique to you and, and that your kid's happy. I mean, Thomas went from stripping all the decorations off the tree to now he just walks in after school, stares at it, and then walks off, you know?

  Nuala McGovern: Now Kellie Bright has some advice for some of the parents listening after her experience this year.

  Kellie Bright: I want to reach out to anyone that has a demand avoidant young person in their household. I have one of those. And, um, Christmas can be a particularly tricky time because actually even though they can be really wonderful, lovely things, they are still things that can be seen as demands, such as advent calendars. And I recently had an incident with my son and his advent calendar, and he did not want to open it because that's a demand, right?

  Everybody else, everyone expects you to open your advent calendar. It has to be opened on this day and actually at times in the past, I would've really reacted to that and told him not to be so ungrateful and that he was lucky to have an advent calendar at all. And actually, I've learned that the best thing in those moments is to step back, not push it, and allow him to decide when he wants to open it. And actually what happened this year was a few days later, he decided to open it and then he was very complimentary and grateful.

  Nuala McGovern: (Laughter) Kellie, thanks to her. But you know, so illustrative and I think echoing some of the sentiments that Andy and Gaz, that you're telling us as well. Um, what if there are other children in the house who want their version of Christmas?

  Gaz: Okay, so I've got an 18-year-old now so I'm lucky if I see him on Christmas Day, to be fair. But, when he was younger, it's difficult because, I mean, it's difficult in life anyway, but around Christmas you have got to be very careful to give them the Christmas they want, which is a very traditional Christmas we're all used to, and used to having as children and not over stimulating the autistic child.

  Nuala McGovern: Mm-hmm.

  Gaz: And your other child is typically jumping through hoops as the years go by anyway to try and fit around everything that, that their little brother or sister needs. So yeah, Christmas is definitely one of those days where, where you have to watch out for that.

  Nuala McGovern: Yeah.

  Andy: There is also another thing, isn't there? Like if your neurodiverse child is happy and you know exactly what they want, don't feel bad if it only costs a fraction of what you bought your other children as long as everybody's happy at the end of the day.

  Nuala McGovern: Any other tips?

  Gaz: I mean for me, that's a really good one. We're buying cardboard boxes for Thomas this year because we're going to make him a cardboard box slide. He will not care. He'll just.. you just gotta think whatever's bringing your kid the most happiness at Christmas. He's getting a slide made out of cardboard and he's going to love it.

  Nuala McGovern: Okay. Thanks very much Andy and Gaz for that. You're staying with us. I want to turn to Katie Ghose, who's also in studio with us. She is the CEO of Kids, a charity for children and young people with special educational needs and disabilities and for their families. She's also Deputy Chair of the Disabled Children's Partnership, which represents a hundred plus charities supporting disabled children.

  Um, really interesting to hear Andy and Gaz's experience. Tell me a little bit of what you've heard from parents.

  Katie: What we hear is, make your own magic, a bit like Gaz you’ve said, we are talking about all kinds of kids with all kinds of disabilities. So some of the parents I talk to, they might say, my child is blind, so the sparkling lights on the tree isn't going to cut it for them. What about a sensory experience at Christmas? Some of the parents with children who have rare health conditions and need complex care round the clock will be worried at Christmas. What if there's a medical emergency? Having thought about that in advance can give a little bit of assurance. And then for kids with significant learning disability may not know it's Christmas in the way we would understand it, for them what might work would be a lovely, ordinary routine and just spending a little bit more time with mum and dad and the siblings.

  Nuala McGovern: Mm, because there can be, for example, a child who feels very anxious or overwhelmed by the sensory overload that can be Christmas.

  Katie: I hear this time and again from mums and dads, and I heard from a mum, Michelle this week, she said she'd had to put aside all the expectations and recognise how overwhelming the run up to Christmas is. Dial down those expectations, it's Christmas dinner on the sofa anytime you like, and it's the half wrapped presents because surprises don't work for every child.

  Nuala McGovern: Let's get into the half wrapped present, because I just alluded to it.

  Katie: Yeah. It's a genius idea, isn't it? And it is about thinking what works for, your kid.

  Nuala McGovern: Can you explain it?

  Katie: I can, half wrap the present because then you can have a peek and see what it is, but you still get the lovely joy of unwrapping the present.

  Another lovely one I heard, a kid for whom a typical Christmas doesn't work. They do a little walk round the block and there are some little things hidden in bushes.

  Nuala McGovern: Lovely.

  Katie: That works much better than stiffly all sitting around the Christmas tree.

  Nuala McGovern: Because gift giving can be fraught. Do you want to get into some of the specifics of why that might be for a kid?

  Katie: Absolutely. We shouldn't forget that gift giving is preceded by weeks and months of a buildup to Christmas and an expectation, and kids at school.. “What are you getting? What are you getting?” And that might not be very meaningful. And we've heard this lovely example about how a cardboard box slide…

  Nuala McGovern: Yeah.

  Katie: ..Is going to work really well for one kid. So, for some children the buildup to something actually creates a lot of anxiety and a worry. And it also doesn't work because then we worry as parents, we want the lovely please and thank yous, if your child is nonverbal, they're going to be communicating in a very different way. And the expectations around the gift giving and the thanking can all be a bit tricky.

  Nuala McGovern: Yeah. Which I think Kellie also told us really with the advent calendar, of what she expected and what was the reality.

  Okay. Let's go on to some of the other aspects and trappings of Christmas, different food.

  Katie: Different food. A lot of the children we work with, they need different diets, that may be for a medical condition, it may be around certain preferences, and they have to be very, very careful about that. If you're going to visit friends or family, they may not understand that. So again, a little bit of thinking in advance. And again, if chicken nuggets is gonna be better than Turkey, then why not?

  Nuala McGovern: Mm-hmm.

  Katie: Let's bring a bit of that magic into Christmas. Thinking about some of these things in advance can really help.

  Nuala McGovern: You know, Andy mentioned going to visit some people, which many people do around Christmas. You have different people coming into your home or you are going to unfamiliar surroundings, w hat's your advice on that?

  Katie: If you want to stay put, stay put. Some of the families we work with, their children are not mobile. They may only be able to go somewhere in a car. One of the families, the adaptation they've done, their Christmas treat, is driving in the car with their child and they see the lights from the car and that's something they're able to do with quite significant disabilities. But if you want to stay put, you can FaceTime the grandparents and then you could do a calmer trip in January. Not everything has to be done on Christmas day.

  Nuala McGovern: Mm-hmm. And for families that are trying to familiarise the child with some of the routines that might be disrupted? What are your thoughts on that?

  Katie: Yes, so mums and dads say to me, use visuals, use pictures, and again, for children who communicate in different ways, but it can be a reassuring, you can even show a picture of the Christmas dinner or a picture of the new house that you're going to be going to. Visuals can make a big difference, and it can signal, and then something doesn't feel so dramatically different when it happens.

  Nuala McGovern: And what about for parents? You know, I think Gaz and Andy described it so eloquently, that there can be a feeling of isolation or disappointment that you go through at Christmas because of, I suppose, the expectation versus the reality. Where can parents get support or what can they do in those situations?

  Katie: You are not alone. There are other parents out there. One of my colleagues says “We are bobbing around in different boats, but we're in the same sea”. My charity Kids organises relaxed panto trips and other stuff, and then the mums and dads meet each other.

  Nuala McGovern: But relaxed panto, what's happening there?

  Katie: Well, it's, you can, you can mess around and you can run around. You're not having to be in a seat all the time, and it's as simple as that. There are lovely activities out there and through that you can meet people in your local area. So please don't feel you are on your own, to be honest, whether you have a disabled child or not, there's a lot of people not having a picture perfect Christmas. They're getting through it and they're finding little adaptations to give them joy.

  Nuala McGovern: Yeah, because I think social media plays into it so much. That was something I suppose that people didn't have to deal with a number of years ago.

  Katie: It is, it is. And you can help yourself out. Some of the young people give lovely tips to us and they say, actually take a break from social media.

  And if you don't feel up to going to a big gathering, one of the young people said to me, have a little comfort pack that you can take with you with some things that will give you security and also have a little code or signal with a trusted adult so if you are somewhere very busy and it's all too much, you've got a way to get out of it.

  Nuala McGovern: Thank you very much, Katie Ghose.

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  Nuala McGovern: Well SEND has been in the news a lot this year. BBC education reporter Kate McGough is here to recap on 2025’s most significant developments. Welcome back to the podcast, Kate.

  Kate: Thank you. Nice to be back.

  Nuala McGovern: Well, is it feeling Christmassy up in Salford right now?

  Kate: Just about got a couple of last minute presents to get, but I think people are getting what they're getting at this point.

  Nuala McGovern: (Laughter) Fair enough. Right. Let's jump into, I suppose, some of the developments this year. What do the stats tell us about SEND in 2025 in terms of numbers of children and also those crucial costs?

  Kate: Yes. Well, we do get a lot of stats throughout the year about SEND, sometimes just kind of annual updates, and a lot of them are moving in an upward direction. As you might expect, a few record highs in there.

  Let's look at the numbers first, so in terms of special educational needs in schools, we've got about 1.7 million pupils in England who are getting some kind of support for special educational needs. That's about one in five pupils. That's an increase of just under a hundred thousand really since the year before.

  And when you look at EHCPs in particular, so those are education, health and care plans. There are about 638,000 of those among young people up to the age of 25 in England. And that's a record high, and that's an 11% increase on the year before.

  We've also got about 200,000 pupils who are currently in special schools in England. And we had some new tribunal stats last week as well, which showed that they're at a record high, about 25,000 SEND appeals tribunals last year.

  And when we look at costs, you know, they're also rising. So, we've got overall funding for high needs rose by about 13% last year. The Office for Budget Responsibility said that's up to about £11 billion, and if you consider 10 years ago that overall figure was about £5 billion, you can see how far costs have been rising.

  Nuala McGovern: We do know in September, the Education Select Committee released a bumper report into the SEND system in England. There have been lots of other reports too. Kate, do you think this is an issue that is gathering momentum?

  Kate: Yes, I think so. And we had quite a few reports come out this autumn in particular, I think because we were expecting reforms to be coming around then. They've obviously been pushed back to the new year. So, like you said, the MPs, we had the Education select committee, they had about 95 recommendations for improving the system, including urging that EHCPs should not be scrapped. Um, the government did give their response to that recently, but the chair of the committee, Helen Hayes, wasn't happy with it. She really wants a much more detailed response from them when we get the reforms in the new year. And we've also had a lot of parent protests this year, you know, in September.

  Nuala McGovern: Mm-hmm.

  Kate: And again, in November. Lots of parents protesting outside parliament, but also outside council buildings, you know, leaving pairs of shoes to represent young people who, who didn't have the right support for their education.

  Nuala McGovern: SEND could be seen as a political football. There's been a change really in the way that the different political parties have talked about it this year.

  Kate: That's right. It's, it's definitely becoming more of a prominent political issue.

  Nuala McGovern: Mm-hmm.

  Kate: I think I said before that the Prime Minister said, it's the issue that he gets the most comments about and contact from the public about. But in terms of political parties, I think there is a bit of a concern in the Labour government that there could be a backlash to any reforms that they put out from Labour backbenchers if they're not happy with them. Similar to what we saw with the welfare reform backlash earlier in the year. And the Conservatives have spoken about the need for increased investment and building of new special needs schools. That's a policy that they had in place when they were in government. The Liberal Democrats have been really vocal on this as well, often calling for the government to look at private SEND providers in particular. And Reform as well, they're in charge of 10 councils in England and their Deputy Leader just this week held a press conference, kind of apologising really for previous comments he'd made where he'd spoken about a crisis of over diagnosis, and he said that he wanted to establish a working group looking at the SEND system. So, it's definitely climbing the political agenda.

  Nuala McGovern: Yeah, change there as well, Kate. Thank you so much for joining us.

  Kate: Thank you.

  Nuala McGovern: Merry Christmas to you.

  Kate: You too.

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  Nuala McGovern: Now every week we put someone in the spotlight who needs to be celebrated! This week it's a young woman called Elvi.

  Now, as we've been hearing, many families find Christmas one of the toughest times of the year. But it isn’t the case for everyone. 24 year old Elvi is a young disabled woman with a rare genetic disorder who has just moved into supported living and she loves Christmas – she lives Christmas - three hundred and sixty five days a year.

  Elvi's mum Sam is here in the studio with me. Hello.

  Sam: Hello.

  Nuala McGovern: We're going to hear more from you in just a moment, but first, let's jingle some bells with Elvi

  TAPE: Elvi and her mum Sam singing along to Jingle Bells (DUR: 01.02)

  Nuala McGovern: So lovely! Sam, thank you so much for sharing that with us and Elvi's joy really that she has when it comes to Christmas and some of the aspects of it.

  I should let people know, as well as being Elvi's mum, you run communications for the Disabled Children's Partnership of which I said Katie Ghose is the Deputy Chair.

  So now talk us through what does Elvi's Christmas all year round look like?

  Sam: Well, Elvi has learning disabilities, so normal rules don't apply. Calendars don't apply. Social niceties don't apply to Elvi. And Elvi has very strong feelings about what she loves and what she likes, and what she really loves is Christmas.

  Nuala McGovern: And that goes through spring, autumn, summer, and obviously winter.

  Sam: Absolutely. We could be walking along the beach in Brighton along the pavement there, and she'll have her iPad and we'll be blaring out Ding-dong Merrily on High and everyone will be thinking “What on earth?” But she loves it and you know, why not?

  Nuala McGovern: Um, and so I know she likes to interact with Christmas themed videos.

  Sam: Yeah. So, um. All year round. She will wake up, it could be four o'clock in the morning. She'll come in into the living room, bum shuffle through from her bedroom and want videos on, she'll want YouTube on, and it will be a very specific thread of Christmas carols and Christmas songs.

  Um, there's a particular red screened, white, sort of lyric video for about 90 different Christmas songs and carols. Who knew there were so many!

  Nuala McGovern: Mm-hmm. You do!

  Sam: I do!...

  Nuala McGovern: (Laughter) Elvi does

  Sam: All year round! And that will be playing all day, but then she'll sort of say, you know, she might choose Jingle Bells, for example, as you heard.

  Nuala McGovern: Mm-hmm.

  Sam: That's a favourite. She will want to hear a really specific version. And there are so many versions of Jingle Bells online..

  Nuala McGovern: And she knows which one..

  Sam: She knows which ones, but that can change.

  Nuala McGovern: Okay. She keeps you on your toes.

  Sam: She keeps us on our toes, so she can say jingle.

  Nuala McGovern: Mm-hmm.

  Sam: She has limited vocabulary, but she has very many of those words are Christmas words. So, um, she'll say “Jingle” or she'll say “Gloria” or you know, so you know which one she wants.

  Nuala McGovern: Another one she loves is Walking In The Air.

  Sam: Yeah, absolutely. We'll be in the car, that seems to go with the car.

  Nuala McGovern: Yes.

  Sam: So quite often we'll be driving, again any time of the year, whenever it is, could be Halloween. And we'll be driving along and the windows will be open and out of our car we'll be… Aled Jones will be giving it loads.

  Nuala McGovern: (Laughter)

  Sam: Um, and again, everyone's just looking at us going, okay. Right!

  Nuala McGovern: And how have the people that are around Elvi been with it. I know maybe strangers, the car, in the other car might be one thing, but I'm talking more about, you know, her carers, her teachers…?

  Sam: They've really leant into it. She's known as the Christmas Queen.

  Nuala McGovern: Oh.

  Sam: She was known as the Christmas Queen at school. So, she left an amazing special needs college this year, and they had a party for the leavers, and it was a Hawaiian themed party. Mm-hmm. But of course, for Elvi the palm trees weren't palm trees, she had a Christmas tree. A Christmas kind of palm tree, and the lights were all up and they did some...

  Nuala McGovern: Christmas in Hawaii.

  Sam: Christmas songs. Yeah, as well. So it was Christmas in Hawaii.

  Nuala McGovern: That is lovely. But when this time of year, when Christmas actually comes around and the rest of the world catches up with Elvi, how does that look?

  Sam: Well, I guess we ramp it up to 11.

  Nuala McGovern: Okay, good.

  Sam: It's like more Christmas. So during, during, um, the year, she has one Christmas tree in her room all year round, a fantastically bright pink tree with balls and lights and everything. And then at Christmas, that is then four Christmas trees. So at the moment she has two in her living room. So she's moved to supported living?

  Nuala McGovern: Yeah. Yeah.

  Sam: And she has one on her balcony and there's millions of lights in her flat and her carers, her amazing team of carers went out and they bought stickers, like Christmas stickers for the windows and they, they did that with Elvi. They put everything up with her. She kind of art directs all the Christmasness. There's wreaths everywhere. All the music is playing as well, obviously.

  Nuala McGovern: Right so we're in Elvis's great place right now, the week before Christmas. But what about after Christmas? How do you come down from that rush?

  Sam: It's a little bit tricky.

  Nuala McGovern: Yeah.

  Sam: So we have to do it quite slowly. Um, it's always going to be there, but the trees are taken down sort of very slowly one at a time. A few less lights and um, the wreaths come down. But yeah. But it will always be kind of there.

  Nuala McGovern: Kind of dimming Christmas a little bit.

  Sam: Yeah. But that comfort that she gets from Christmas, that we all get from Christmas, you know, that sort of sense of family and, and just warmth and light and joy will be there still.

  Nuala McGovern: It's very lovely to think about.

  I want to bring another little bit of Elvi and you.

  TAPE: Elvi and her mum Sam counting the number of Christmas trees in her flat.

  Sam: Elvi. Can we count how many trees you have? How many Christmas trees? You do Christmas tree. Christmas tree. How many trees? What? How many is that? That's…?

  Elvi: One.

  Sam: One. Christmas tree. What about that one? Elvi is there one over here? Two Christmas cheese. What about the one out there?

  Christmas?

  Elvi: Tree.

  Sam: Tree! That's three in here. And you've got one in your bedroom, haven't you? So that's four Christmas trees.

  Elvi: Yeah.

  Sam: Merry Christmas, my darling. I love you. (Kisses)

  (Jingle Bells)

  Nuala McGovern: I find it so moving, I have to say, listening to that little piece of tape, quite something. Andy and Gaz.

  Andy: Oh, it's absolutely beautiful to hear yes, having the spirit of Christmas every day.

  Gaz: Yeah, it's lovely. She like, really loves Christmas, doesn't she?

  Sam: Gaz are you going to cry?

  Gaz: I'm such a wetter (Laughter)

  Nuala McGovern: If we can't do it at this time of year, when can we shed a few tears?

  Gaz: It's Christmas.

  Andy: It because it’s Christmas.

  Nuala McGovern: Very dusty in here!

  Um, Sam, again, thank you for bringing us Elvi.

  I do want to let people know you can listen back to other people in the spotlight, the wonderful 9-year-old Henry in our first episode, or the family praising their amazing teacher, Mrs Robinson last week. All those episodes are on BBC Sounds. It’s SEND in the Spotlight. And that is it for this episode and for our episodes of 2025.

  Again, thank you so much for listening. We will be back in the new year with an episode about the concept and the reality of inclusion in mainstream schools. I know you'll have a lot to say about that. That will be out on Monday 12th January but until then, we wish you all a peaceful and a festive season. Goodbye.

  All: Goodbye.

  (Theme tune)