Who Cares? With Niamh and Sara Podcast
Two friends discuss the highs and lows of life as mothers to severely disabled children with dark humour, a unique insight and brutal honesty
Who Cares? With Niamh and Sara Podcast
Summer catch up
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We are back! After a busy few months, we catch up on all that’s been happening in ours and our youngsters lives
Good afternoon, Eve. It is afternoon. Afternoon it is. It's been a long time. Um 14 years, three months and two weeks since I saw you.
SPEAKER_00Yeah, it's been how long has it been since we've done a podcast?
SPEAKER_01We did an Easter catch-up, then we did a couple of others, so it's been a long month.
SPEAKER_00A couple of months, and we've just time has just run away with us, isn't it?
SPEAKER_01But back by popular demand.
SPEAKER_00Because people can say, Well, when are you coming back so I can leave the country? But yeah, just time just ran away. It was like I couldn't do it this week, couldn't do it this week, and then next thing you know, it's what the 3rd of August today. Incredible.
SPEAKER_01Um I don't actually know where July and June went, and I think this heat wave thing has made us all I don't know, made our brains a bit fuzzy and just it's coping, it's coping with the heat's been a really bizarre thing. Yeah. Almost like a lockdown in some cases.
SPEAKER_00Yeah, well Oliver don't cope well in the heat. And he had a week the first week we had the hot sun. Um he was the school was shutting early, I was picking him up early because it was just too hot in school. There's no air conditioning in that building, and he was at school and he was just he was having a lot because he has lots of seizures when he gets hot. Oh god, yeah. So that's one of his triggers, tiredness and seizures. Seizures make him tired. It was just I was getting him back home because my house is really cold.
SPEAKER_01How are you keeping him cool then?
SPEAKER_00I have got air conditioning in his bedroom, which we had fitted in March, and I couldn't have picked a better year to have air conditioning fitted for him. We'd been talking about it for the past few years because every time it got to that summer bit when it was hot, and it's just like when it's hot over night, he won't have even though he loves fans, he won't have a fan on his bedroom. It distracts him too much. So he won't sleep. Right. And then he keeps getting up and turning it off. And then he's up and down. Then I tried putting a putting a because he's got a staying. I have fans, but I don't want them on. No, not in the summer. He likes them on in the winter.
unknownYes.
SPEAKER_00In the summer, he toes around turning them all off. Oh in the sum it like he will sit, we've got a fan in the living room. He will be in his bedroom, he can't hear it.
SPEAKER_02Yeah.
SPEAKER_00But he gets up, comes into the living room, turns our fan off and goes back in his bedroom. No. It's like he's and he looks at me and goes, hmm, he's the fan. Yeah, like well, we call him Greta. Greta Fimbox. He's saving he's saving the planet. Bless him. He turns all the lights off. Bless him. He turns the telly off. He shuts all the windows, shuts all the doors. Good for him. And then he and yeah, he's got a bit obsessed with the air conditioning unit because he's pointing at it for me to turn it off, but he can't turn it off. He knows it's a remote control and he points at the remote control because I have to hide it out of his bedroom so keep it on. But he is getting used to it, and it's so much colder in his bedroom. And I just I'm not worrying about him getting overheating in the night because he won't sleep with no cover on. So if it's hot, he still wants his quilt on. I've tried even putting a sheet on his bed so that he's got something on him, but he he wants the full quilt experience.
SPEAKER_01They get the whole thing of like this is what I normally do, don't try and make me do and he doesn't understand that he's getting too hot because the quilt's on him.
SPEAKER_00So now I can put him in his pajamas that he likes wearing, and I can put the quilt on him because his bedroom's cold. Yeah, yeah, yeah. So it was money well spent. Oh you is everybody queuing up to a veil of your air. Oh, but the other day I was laying in his bedroom reading my book just to kick.
SPEAKER_01But it has been mad. I mean Sorcia's hub have actually cancelled sessions. I've lost count how many times now they've run up and said, Look, it's going to be too hot today. We don't have air conditioning in. They don't have air conditioning in their minibus. Imagine that. Imagine that. That must be a really old mini-bus then. Uh it's not a new one, but apparently the air air conditioning only works at the front of the bus. So the kids at the bus, at the back of the bus, the kids at the back of the bus get hot. They get hot, they get hot. So they don't bother taking it out. Um so the kids are stuck in the center.
SPEAKER_00You would think if it's got air conditioning at the front, yeah. And they've got all the windows shut. If I was to put the air conditioning on 15 minutes before they all got in, it would cool the whole business.
SPEAKER_01I have no idea. I don't understand it, but she it's been cancelled several times because the option has been go in and sit at the base all day doing nothing because we can't go out too hot.
SPEAKER_00Have they got air conditioning?
SPEAKER_01Yeah, but it's pretty basic. And why does she want to sit there all day? No, she can be at home doing her own thing. So yeah, today was another day that ran out. Today it's gonna be 32 degrees today. So I thought, okay, I'll keep her at home. I took her out to the shop this morning first thing. She got what she wanted to come home and that's it. But it's been a summer of having to try and keep them comfortable, hasn't it? It really worked out.
SPEAKER_00Yeah, I took him swimming a couple of times just to I took him for a drive in the car with air conditioning on to skip out. Um but it was like it's it's too hot to go in, even in the garden, to go in the paddling pool because it's like he wants to sit at the side of the paddling pool throwing stuff in it, and it's just too hot.
SPEAKER_01Yeah, we had, I mean, we had a very hot show this year. Very hot. It was what it must have been about 30 degrees, was it? Oh, it was at least. So we had we had seizures and meltdowns and hysteria and all sorts, but the heat was just ramping up.
SPEAKER_00Well, I was wearing a hat a wig, a costume, a coat. It was who were you, Sarah? I was Captain Jack's Farrow Neve. I loved my costume, but it was hot. Um, but my my moustache melted off halfway through the show. Was that a wig hot? Really hot. All I kept saying was, I'm just so hot. I'm just so hot. It was ridiculous. And I didn't want to take it all off in the interval because of putting it all back on again.
SPEAKER_01And those halls don't have air conditioning and they don't have air conditioning.
SPEAKER_00But it went it it went well. I mean, considering how hot it was that day.
SPEAKER_01Yeah.
SPEAKER_00Um it went well.
SPEAKER_01It absolutely just had to try and keep cool, but you could see the effect it was having on all the kids. So anybody who's got kids with special needs knows what they're having to do to survive this uh because Oliver doesn't understand that it's too hot, so he'll point to because he likes to go down the summer house to play with the fans.
SPEAKER_00It's too hot in there, yeah, and he's pointing and he wants to go and the the decking's boiling hot and the grass is boiling hot, and he wants to walk across it and he doesn't understand that that's gonna burn your feet. You it's put too hot in there, and he'll just sit there and get hotter and hotter and hotter till he has a seizure because he doesn't understand that he's got to keep cold.
SPEAKER_01Yeah, oh it's night, so Saucia has a fan up in her room directed at her.
SPEAKER_02Yeah.
SPEAKER_01At hers. I'll put the blind down to keep the room cool, but she's got her DVD on, her record player on anything emitting heat she's got on, so it's uh just gotta do what you do. She's sitting there like Lady Mutt, but at least I've taken off her um the duvet I've taken away, so she's only got the cover. Yeah.
SPEAKER_00So she's gonna be. Well I've tried that, but Olive because it's so thin, Oliver ends up getting wrapped up in it. It goes even hotter than he should be. Yeah, and he d and he's not happy because it's not that heaviness on him. Yeah. So tell us as well. You have some big news about your marathon running. Yes, I am I've gonna do the marathon again. I've I've signed up to do it next year. 27 is your year. 27, 25th of April 2027. I'm running the London marathon. How's the training? Because I couldn't. I'm not really training at the moment, I'm gonna start in October.
SPEAKER_01You couldn't because you had a mishap on holiday this year. Yes, well, we talked about that, didn't we?
SPEAKER_00Yeah, so uh and it's the knee all. And I pulled out of this year's marathon, but then my so-called friend, I went round there. My the lady that does my hair, um, she's she ran the marathon this year. Oh, right. And I went round to see her, and um she was sitting there and she's always signing up for different runs, and she went, Oh, there's a half marathon in because I'd started running again, and I said, Oh, I've got to have to test my knee out to see how it is, thinking I might do a 10k or something. She went, There's a half marathon on the 14th of um June. I went, How long ago how long is that away? She went, eight weeks, and I thought, oh, it's not really long enough to try. Yeah, because I'm starting from the beginning again, yeah. And um anyway, she came I went round there to get my roots done, come out, signed up for a half marathon, but I did it.
SPEAKER_01That's the one at South End, yes.
SPEAKER_00I did that, I did that on the 14th of June, and I ran it in a better time than I thought I was gonna do it, and my knee was fine, so that was it then. I went to do the full marathon. ADHD kicked in and I went, Oh, let's do the full marathon. Good for you.
SPEAKER_01So, yeah, I'm running it for Haven House. And we've had a big event for Oliver. Oliver has finally left school.
SPEAKER_00Oh, Oliver left school on the 16th. Oh, I was emotional that week. I was really emotional because he had his prom the week before. What did he look like for April? He had on a little taxi doll? No, he had a uh trousers and a shirt with a tie and then a little waistcoat because it was so hot and a little waistcoat and he looked so smart. Oh and then when he got it all on I started crying, and then I took him to the prom and left him there. Then I come back about half an hour before the end because the levers, because that that this year they had 14 levers. Oh wow, normally it's only about six or seven. Well sometimes it's only two or three, isn't it? Wow, but that's 14 livers. So it was a big thing for the school because like a lot of these kids had been there since they were little, yeah, and so everybody knew them really, really well. Oh so there was yeah, there was 14 leave-in, so they had 14 prom king and queens.
SPEAKER_01Um and how was it? There was was it like a carry moment or was it all smooth and lovely?
SPEAKER_00No, it was all lovely. Olive went round, obviously went around turning on the lights on.
SPEAKER_01Did he?
SPEAKER_00It was his prom in his wall cut.
SPEAKER_01His prom, he can do what he wanted. Did he have any concept of of it?
SPEAKER_00I don't think he was really confused because I got he got home from school. Well, who got this shirt? Yeah, no, he got home from school in the house because he finished at one, so he got home from school in the afternoon. So we'd had our little lazy duck, lazy afternoon in the air conditioned room, laying on the bed. I was going, oh yeah, it's lovely in it. And then at half past four he had his dinner, and then at half past four, five o'clock, he had a shower, thinking he's gonna get in his pajamas because that's what he does. Yeah, and then I put a suit on him and then got him in the car and drove him back to school. No, no, no, me, me, this boy, I'm going out tonight. All the teachers are there and they're all dressed up, like ready for prom. And they was all crying. They was all because I'm with his lights. I know he must have been thinking because he was laughing. They was all crying because like obviously there's some some TAs have been in his class for like three had him for three years. Yeah, um, some of them have no known him since he was he'd been there since he was three, some of them have known him since he was little. Oh god so there was ones that were that there was crying, and then I come in, I had all tears in my eyes, and then that was that week, then the following week was his last week. So we had the levers assembly, cried then.
SPEAKER_01Oh my god, it is emotional, isn't it?
SPEAKER_00And then on the last I think it really got me on the last day because it was I drove into the car park to pick him up on the fr on the um Thursday and um his teacher brought him down, or his two TAs brought him down, they was crying as they come down the ramp, they was crying, and then I looked at someone else and I just thought, this is the last time I'm gonna do this. Wow, this is I mean not how many years? Sixteen years he was there.
SPEAKER_01He started when he was three, huge, huge, huge.
SPEAKER_00So it was sixteen and a half years, um, and also it was like it's been a big part of my life. That school has been a big part of my life because it's like it's not just dropping him off and picking him up, yeah. It's it's not so much, you know, like uh a like a um a main street, yeah. A mainstream school. Yeah, you've got to get the city. You talk to some of the parents at the at the gate and the mum's talk, yeah, but it was like I got to know all the staff because I'd drop him off in the car park and they'd come out and get him and take him in in his wheelchair. So I'd talk to the some of the teachers that have looked after him, and then other ones that I've known for years have come out.
SPEAKER_01The relationship is completely different in a special needs school. And even with the other parents, you you've got to know them and all of the problems that they've had because you're all there. Yeah, you're there. It's it's not a lot of people.
SPEAKER_00And also, even like when I'd pick him up from after school club and I'd sit and I'd have a chat with the receptionist. Yeah. And the people that work on reception, I knew the receptionist, I knew the teacher's pit the head teacher's PA, the physiogue.
SPEAKER_01Oh, it's completely it's it's so much part of your life.
SPEAKER_00Yeah, and it's like that I that's when I realised that that's it. I did say to um one of the teachers, because I'd see her every morning, we'd have a chat every morning when I'd drop him off. And um, I went, I might just come once a week when they go back and just drive in the car park, shout a load of abuse at you all, and then just drive back out again just so I can see ya.
SPEAKER_01Without Oliver. So you left all emotional.
SPEAKER_00Yes, I was all emotional and he finished.
SPEAKER_01You know what they did, don't you, in the staff room? She's open a bottle of champagne. Oh, that's the bloody big thing.
SPEAKER_00It was more upset that they weren't gonna be seeing me anymore.
SPEAKER_01Oh you tell yourself that five times a day.
SPEAKER_00But then you had some really good news because Well, he he got accepted for his funding for his um centre.
SPEAKER_01Not without a fight. Not without a fight.
SPEAKER_00No, it's been we're please tell us the situation now for Oliver's This has got to be told, Oliver's transport.
SPEAKER_01Let's sum up. First of all, he got the place that you wanted in the world.
SPEAKER_00Right, he left he left on the Thursday for school, yeah, and he was starting his new centre on the Monday.
SPEAKER_01Yeah.
SPEAKER_00But ongoing from this, transport was because it's a 45-minute journey away. Right. So transport was supposed to be sorted out for him, but there was a discrepancy like there always is between health and social care. Yeah. Social care was saying health needed to pay for it because it's a health need, because Oliver's got epilepsy, and he has to have a chaperone with him in case he has a seizure. Yeah. And then health were I mean and RM, whether they was gonna pay for it, we're gonna pay for this, but we're not paying for that. So there was a big argument, and I'd made multiple complaints, yeah. Um, because I think two weeks before he was supposed to be starting, I was told there was no transport yet. Yeah. Because social care are not allowed to organise it, because health have got to do it, and health are ignoring my ears. So they're all having arguably pay for it. So he started on the Monday, and I'd prepared myself that I probably wouldn't be able to go to work because I was gonna have to take him.
unknownOh god.
SPEAKER_01So on the Monday I'll say 45-minute drive. How many miles is that?
SPEAKER_00So it's 22 miles. There, 22 back. So it's 88 miles a day, and it's an hour and a half. Well, uh by the time I leave, so I'll leave about half past eight. By the time I get there, it's it starts at half past nine. By the time I get home, it was nearly half past ten. And then at half past two, I've got to leave again to make sure I'm there for half past three when he comes out. So how long did this joyous thing have? Oh, I only did it on Monday. So I did it on the Monday and the Tuesday, and I've got a phone call on the Monday night, and I think health have panicked because they know that they have got to pay for it. Yeah, they'd they'd admitted it the week before, but they still hadn't done anything. Yeah, there's no way around it, yeah. So she phoned me and said, We've sorted out some transport. An ambulance will be picking Oliver up on Wednesday, and I went, What? Me, mommy. I went, I'm not thinking an ambulance, this is a bit dramatic. Um with two staff on it, one driving, one to support Oliver. It's like um, you know, like the ambulances, the ambulance transport they use attack. It's takes you for your appointments and things like that. Yeah, but so it's got a stretcher in it and it's got chairs in it, but it's not like an ambulance with lights on top. It's it says ambulance down the side. Are there people on it when they come to it? Oh, yeah, they're fully in paramedics uniforms. No, but are there people getting on it going for their appointments? No, Oliver's the only one on it.
SPEAKER_01He's got he's got the whole ambulance to himself. Yes. And they send the ambulance to my house to pick him up.
SPEAKER_00Right. And then they pick him up again at our past three and bring him home. Oliver is over the fucking moon. He can't wait to get out there in the morning and get on an ambulance to himself in his own little chair. Does he love it? Yeah, he loves it. He loves it, absolutely loves it. But it is a bit dramatic, considering like most kids and young people go on a bus or a taxi or when do you get on the ambulance? Does he have a like his own favourite seat? Yeah. Does he? He goes, he goes up the ramp, he comes out and he walks out of my house. I have to hold his hand because he wants to walk up the ramp, and he walks up the ramp and he goes right to the front of the bus. So there's like the the front of the ambulance where the driver sits, and then so that's got three seats, and then there's one little seat that swivels and turns round that sits right by where the sliding doors are, so he can see everything. This is automatic.
SPEAKER_01So if anybody's driving along in the morning or the afternoon and they see an ambulance going past them, and there's one kid sitting on it, give him a wave. Oh no, he's got black tap windows, you can't see him. Oh can he see out? Yeah, he can see out. Oh, that's absolutely mad.
SPEAKER_00So at the moment, the the provisional temporary solution is a ambulance.
SPEAKER_01Yes. And uh well, what can you say?
SPEAKER_00Look, I can't I'm not saying anything because he's getting there and he's getting home.
SPEAKER_01Yeah, his needs are being met, but how ridiculous is it? Ridiculous, it is ridiculous. Is this um and they had they knew they were aware that this placement was coming out? Oh when?
SPEAKER_00Well, I We're in July now. It was supposed to go to panel in December last year. Last year, and then they put it, I was put, I think they was gonna put it off till January, and then they didn't go to the panel until May. But May it was agreed. Yeah. So they've had the whole of May, the whole of June, they just and the beginning of July. Well, at least as you say, he's going, he's enjoying it. He's enjoying it for driving. He seems to be, he's do I mean he goes there five days a week. That's amazing. Um at the moment. It has to be reviewed again in September just to see how it's getting on. It's not too much for him. But he's um he's been ice skating. He's been to Ice skating, yeah.
SPEAKER_01Come on, tell me how does he do ice skating on a wheelchair in a wheelchair?
SPEAKER_00He goes, right, so they put the wheelchair on this like um it looks like a big massive ski. Like not like ski, it's like looks like a big tea tray, massive tea tray. Probably isn't it? Yeah, and they put that on the uh that's from what I can see from the picture, because I haven't seen him do it, and then someone pushes him round. So it's wheeling on ice, yeah, wheeling on ice, and Oliver Light's going fast anyway, so he'll be like that. Have you ever heard of that? That is amazing. And I think they hire out the actual rink so that it's only them that died. So has he ever been before? Only once. So me and his carer took him to um Canary Wolf, they have the outdoor rink in the winter, and we took him there and they said we could wheel him on. So he just went on with his went on on his that stops you falling over on your ass. Yes, because I got the carer to do it. Because I always used that penguin thing. Yeah, well I got the carer to do it, and he was um he was adamant that he was a really good skater. But he looked like he was really leaning on the wheelchair, and I went, go and once on your own, and he went, Oh. And he's a really tall guy as well. That must have looked.
SPEAKER_01But I did go once, like you say, these outdoor rinks. I went one time to Saw Shop and I just I clung to the edge all the way round. Then finally I realised she could have this penguin thing to support her. Yeah, yeah, yeah. I've seen the little kids have it, didn't they? This big kid had one as well. Oh, you didn't have a penguin. I couldn't go on the phone I don't know how anyone does it, but I fell down and I was holding on to her, and she came down with me. She didn't let me forget it for about a month. She goes, You pulled me down, you pulled me down on the ice ring. Evil mafa. I know it's all all I heard her say. So that is really great news that he's driving. I mean, Saucia's about to start a new with a new centre as well, because she's kind of outgrown the one she's got. And she's excited about that, isn't she? She's really excited, and I said to her, they do lots of activities, she's met up with the people, and there are people who go to it that she knows as well. Yeah, that's gonna make it much better for her. But they're more her age group, more her ability. Because this is the other thing we often find, isn't it? Special needs is not one size fits all. Sometimes you you need to be she's got a Down syndrome, it's gonna be really nice for her for a change to be with lots of other kids her age with Down syndrome because she's not had that thus far. So she'll be starting. And I said to her, What activity would you like? You can choose lots of activities. I said, What would you like to do? She said, Taekwondo. Where the hell the tae I didn't even know she knew how to say taekwondo. Let her alone know what it was. So she's obviously seen it on the telly or something. So um she's gonna go. They do go to the gym. They do go to the gym. She saw the picture of the gym and she said, so then she turned around and she said, and boxing. Yeah. So my darling little princess. It's gonna be kind of doomed. The other day she was watching the telly, she's obsessed with it. World strongest man.
SPEAKER_00I don't have to remember it was Jeff Capes when it was. Yes, yeah, you loved that when I was a kid.
SPEAKER_01Oh, she loved it. And you can hear when she's gonna pull along the car. She's pulling the bed round. Yeah, leave the bed for it's off. You'll come that one day and she'll be to drag the bed down for she'll have a great big stone pole in the hand. But so she's gonna be starting that this week, so we're really looking forward to it. And she's doing that once a week. Once a week. Is she staying at the hub for once a week as well? Or are you gonna phase that out and then I'm gonna let her stay at the hub once a week and then do this once a week so she still gets the two things twice a week. Um and we'll see, we'll see where it goes from there. Um, but I'm really glad and she's positive she's now 26. She has completely changed over the past year or two.
SPEAKER_00She's grown up. You told I briefly spoke to me about um you've spoken to a social worker about getting more help for her. Yeah, fine. So what have they said?
SPEAKER_01They've said um they're going to look into respite for her at last. So respite's for you. Well, for me, yeah. And I said, wouldn't I be able to have a choice? Like, can I go in and visit the places you're planning on putting her in? And she went, Oh yeah, I said only ask thinking, oh I want to put in some place, you know, high on a hill.
SPEAKER_00Yeah, no, you will you will and you'll get to that. You can research places and then ask them I've seen this place, this place, I want her to go here.
SPEAKER_01Yeah, so that I I'm definitely gonna get that. Oh, I'm going to be assessed with the care package, the carers package, blah blah blah blah blah. Well, here we are now in August, so we had the assessment three weeks ago. We're in all I expect to hear back from probably February 2027. No, you shouldn't chase it up. Oh, I I will, but this is here we go. We'll begin this, we'll be promised this and promise that. But in the meantime, like you, you get on with it, you investigate it yourself.
SPEAKER_00Yeah, you put it. Well you've got time now to start looking at respite places because they've they're quite few and far between. It was really hard to find respite for Oliver. But you have a look. I'm sure there was a was there one in I can't remember now. But I'll have a look.
SPEAKER_01Yeah, I will I will absolutely start doing that now because she said no, you're you're entitled to it. We will get it, and it's nice and then you'll see. When she rang me up, she said, I'm coming to I said, She doesn't have a social worker. And she said, No, no, no, but uh she's on our list, so I'm gonna come and see her. And I said, What exactly are you coming to see her for? She said, an annual review. I said, Well, you saw her four years ago.
SPEAKER_00Not annual, is it?
SPEAKER_01Nothing annual about that lady, but anyway, we'll see what happens. And then the other new thing that we have, oh my god, we got a puppy. Ah Little Jeff. We got Jeff Buckley, or Jeff Buckley, as Sortia calls him. Jeff Buckley. She comes down and she goes, Hello, little man. Hello, little man. I've had a cuddle in this afternoon. And that sort of yeah, he's a gorgeous little ball of golden retriever. And um he's just who is now locked in the other room with your daughter. Because we don't want him in our studio, so we're making a noise.
SPEAKER_00Can't have him breaking our microphone.
SPEAKER_01No, no, we can't. Chewing. He's chewing, chewing the microphone.
SPEAKER_00So so far we've had All this technical stuff we've got in here.
SPEAKER_01Yeah, he'd he'd definitely chew that microphone. He'd swallow everything. So we've he's had chewed skirting boards, chewed the leather chair he thinks is a giant chew. He's had my jeans, he's oh my god, it's he's eaten a broom, he's eaten a mat.
SPEAKER_00And Solcha wasn't happy first of all, would you?
SPEAKER_01She was not. In fact, yeah, she was more anxious about the cat that we have. She gets What the cat wouldn't like the dog? The cat wouldn't like the dog, the cat would be frightened of the dog, and that was really well she's changed her tune now, though, hasn't she? Yeah, but the cat hasn't. Does the cat not like the dog? She's hissing and growling at it. But give it time, they'll settle down. I mean, he's been really, he hasn't gone for the cat. He's kind of gets excited, and she's just been all deeper giving him date looks and everything, but we just keep lying to Sortia.
SPEAKER_00Yeah, they love each other! That hiss means hello, I love you, puppy, I love you, puppy.
SPEAKER_01She's like, Okay. So Sortia's fallen in love with him. Yeah, absolutely. Because you was a bit worried, wasn't you? Yeah, because she kept saying, No, no dog. No dog, no dog. And the weird thing is he already, even though he's only four months old, he already knows, he seems to know, to behave with her in one way. It's weird, isn't it? His sister in a like more boisterous way, and me, he kind of just goes, Oh, if she comes, I might be in trouble again. But it is how they sense it.
SPEAKER_00Yeah, it's incredible. So he's really gentle. I think dogs sense when someone's not well and when someone's got special needs. Yeah. But my mum's dog used to be with Oliver. Yeah, they they absolutely must do. So that is keeping me very busy. Also, that's what I wanted to ask you. Um sortia's hearing aids?
SPEAKER_01Dare you ask about the hearing aids?
SPEAKER_00Oh yeah, because this has been going on for over a year, isn't it?
SPEAKER_01Yeah, she still hasn't got them. Oh, it's a joke. She still hasn't gotten them, and when I saw the the the people in the hospital on when was it? It was it was the middle of May. They checked the hearing aids have arrived. They're in the hospital. So why have you not gotten an appointment? Because she's got to be seen in a complex needs clinic, which only happens once a month. So fine, okay, we'll put her down for an appointment. Still waiting for that appointment. We're all used to getting appointments that are six months away, but I've had no appointment at all, so now I'm gonna have to make an official complaint. That's how ridiculous it's got that this child is still waiting for her hearing aids. Because that would that that that would open up her world so much and enhance her life completely. So again, that's a battle. So let's uh chances are she'll get them and the dog will eat them. You hear through his mouth. You just talk into his mouth. So holidays? Have we had any holidays?
SPEAKER_00Um have I had I don't Oh, I did have a holiday in June, didn't I? Where did you go? We went to Lanzarote. But it was was it just you? Yeah, just me and Dave, yeah. Oliver was in West Bright. Yeah, we went we went away in June. Um and then when Oliver finished school, uh he finished school on the Thursday, and we went to the caravan for the weekend before he started his new place. So we enjoyed that. My mum came and visited down for the day with my brother and my stepdad. Um, and I took my we would we took Oliver out in one of those, you know, you get the little go-kart y bike things that you've got four people can go in. Me and my mum thought it'd be a really good idea to go and get one. She's 74. She's I mean, she give it, she gave it some. We couldn't get it. We our caravan was on a hill. We could get out the air to get out and push it. And when then when we went and got my brother and Oliver, me and my brother were peddling it. My mum and Oliver were sitting at the front, it was so heavy. We're peddling four people now, and um, yeah, we did get stuck a couple of times. I thought we were gonna go backwards, but Oliver loved it. Every time we went over a speed bump, he was laughing. But um, yeah, we went there, we went to um Great Yarmouth for the day. Um, and that's a great place. Yeah, we went there and we took Oliver actually. I've never thought about it before because he would he wouldn't have tolerated it before. It just shows how much he's grown up. Yeah, we took him in the um aquarium. Oh, but it did make me laugh. He weren't even looking at the fish. He was looking at you know the pump that pumps the water out.
SPEAKER_01Fanboy meets pump. Hello, pump.
SPEAKER_00Look at that fish, look at that, look at that. What's he looking at? And he's looking at the where the water comes out. Did he look at any of the fish at all? He did, he did look at them, but he wasn't he was more interested in the pump.
SPEAKER_01That's hilarious.
SPEAKER_00But um you know he was really good at and the lat uh it's a lot of people. What did the job is taken to being cute? It just shows you how different some places are to others. Yeah, so we went to this aquarium and I thought I'll go in first and see how much it's see how much it is because I don't want to pay like 70, 80 quid, and then Oliver's in there two minutes and wants to come out. I didn't know if he would like it or not. Anyway, the lady behind the counter, she couldn't have been more helpful. She was so lovely, and I said to her, like, she said, Have you got proof you've got a pip proof of people? And I said, No, he's outside in the wheelchair, and she went, Oh no, if he's in a wheelchair, she said, No, don't worry about it.
SPEAKER_01Oh wow, yeah.
SPEAKER_00Um, but she used her initiative, yeah, and she said, she was an older lady, she was really lovely, and she said, We'll stamp your hand, yeah, so that if he gets it's too much for him, you can take him out and you can bring him back in any any time so you can go and have a rest and then come back again. Yeah, believe. Um, and then she said, Um, so you'll just pay for Oliver, yeah, and Kara goes free, right? So I'd pay for Dave as well. Yeah. And then she went, Have you got an access card? And I went, Actually, yeah, I have, because I'd spoken to you about an access card. And I got the access card and I haven't used it, I just put it in the front of his bag. And because Oliver is two to one when we're out, yeah, they had put two to one on it, so he's he needs two carers, and she went, Oh, it's got two on it, neither of you have got a pay. Results, so we just had to pay for Oliver.
SPEAKER_02Oh wow.
SPEAKER_00So but I wouldn't have even thought of that. She went, and I said to her, I said it didn't even cross my mind that I had the access card, and she went, Well, you've got enough to worry about. She said that In fact, it's funny you should say that about the carers.
SPEAKER_01I don't know if I mentioned this before or not, but recently she has also had a membership for a zoo. And a zoo. What's a zoo? A zoo. Oh, the zoo. What is a zoo? A zoo is where there's lots of animals. All different animals. With different sizes. And an azo. No, an azoo, it's a zoo, darling. So the zoo. And it's full of animal the zoo. The zoo. The zoo and it's full of animals. So she loves it, so I take her there. And every year, for some reason, we have to keep proving that she's disabled. It gets a little bit tedious. One year it's because they were going digital, another year it's because they've changed the name of the zoo, it's now a different name, blah blah blah. Anyway, this year went to renew the membership, annual membership. And she said, Have you got in can you bring your documentation with you? And I went, Oh, what again? Because of course now, so much of it's online. Ringing up the DWP and saying, Can I have a certificate? It's not that difficult. But in this age of paper-free, you know, uh admin, it's very hard to actually have a lot of fun. And they wanted one in a date as well. Yeah, absolutely. So that's all hard. It's a bit of a faff. So I said to her, I brought this again, it's obvious she's got Down syndrome. Why do we have to keep doing this when she's on your files as having especially? She said, No, it's not her that we need to prove is disabled. We we know that. She said, It's to prove that she needs a carer. Oh, okay. She said, because we give free carers passes, which they do for the carer to go in free with the person. And she said, it's being abused a lot. Oh, okay, which you and I have known have talked about uh time and time again. So she said, so now we need to see that there is a component on their uh their pip statement that says they need to be cared for. So in that mobility bit where it says they need to be assisted on a journey or whatever, she said that's what we need to check before we give out the free carers pass. So I said, Oh, so finally you're tightening up. She said, Absolutely. It's just but it just makes it harder for it makes it harder for everybody else, doesn't it? That really does need it. It does, but of course, if we do really need it, it will be on that component. Well, that's why I got the access card.
SPEAKER_00I think I either got social worker or a nurse or someone to say that Oliver needed two to one when we was out, yeah, because it does it it's got all little symbols on it, and all the symbols mean different things. So some is for mobility, some knows that they can't they can't do steps, some need they need um accessible toilet, yeah, um, and they've all got little they've got little and it I think it was 15 quid, but it lasts for three years.
SPEAKER_01Yeah, it's a it's a brilliant thing, isn't it?
SPEAKER_00But then it's got Oliver's picture on it, and it's got it's a little it's like a little credit card, and then wherever I go, then I haven't got to take his pip his pip form or prove or anything. You just say I've got an access card. Some will accept the two to one, yeah. Not all. Right. Because they think you should be paying for one or two. I don't know, I suppose so. And because sometimes it makes it difficult because if you want, say you was going to a concert, which I'm unlikely to take all of the two, if you was going to a concert and it had a he had a wheelchair seat, yeah, it only normally has one carer seat. Oh, of course, yeah, there are things like that.
SPEAKER_01Yeah, yeah. So it's a great idea, the card is a great idea, and I must I must get one. But I thought it was really interesting that now there is that this change of view that you don't automatically assume because you've got a disabled access card that you're going to be able to get the carer in free.
SPEAKER_00Yeah, it has to say the access card tells you how many carers they need, or if they or if you need a carer. But we've said this for years. I I've you know really Because Oliver's 19 years old and ordinarily, if he was going to Thought Park or Legoland or whatever, he'd be going on his own now. Absolutely. He wouldn't be going with his mum.
SPEAKER_01But also, if you if you've got somebody who may be in a wheelchair who is still able to get around um on their own, goes to work on their wheelchair, you know, all of that kind of thing. They don't let's let's say the division line is learning disability or no. Yeah. So they don't need carers for disability. They don't need a carer with them.
SPEAKER_00I t I I will tell you when we went to that aquarium in um Great Yarmouth. The so they had a change in places in there. And I'm you know what I'm like about the changing places because there's so few and far between. I said, Have you got somewhere we can because we got him outside and then I realised he'd wet through and I went back in and she went, Oh, it's over there. I went, it was brand new. It had a bed that went up and down. Get this, it was it was pristine in there. It was so lovely to go in and comfortably change him on a bed. Oh, how nice. I like to take all his clothes off and change him. Yeah, it was to comfortably change him on a bed, it had all the the paper stuff that you put down. Yeah, and it was just like, oh my god, why can't more places go like this?
SPEAKER_01I think they probably will if they have to update. Yeah. They probably do that, but it's just that so many they don't bother to update, so that's where you're stuck. So um we are planning what to still interview people. We are, it's just it's just the logistics of getting three people into a studio.
SPEAKER_00Well, it's not so much the three people into the studio because it's quite a spacious studio. Your front room would be.
SPEAKER_01Um no, it's trying to get everybody in one place at the same time.
SPEAKER_00And everyone's got a lot of it. It's very complicated. Yeah. But we will, we will. We'll carry on doing our um little podcast chatting, especially when stuff comes up. Um, but we'll try and we are we are back.
SPEAKER_01We are back we can say we're back, and we will be putting out some over the next few weeks, and um yeah, all good.
SPEAKER_00Yes, so I'm gonna go off. You're gonna go and uh see to Jeff Buckley.
SPEAKER_01Jeff Buckley needs his feeding, feeding time at the zoo. A zoo. A zoo, feeding time at a zoo, right and I've there he goes, feeding time at the zoo.
SPEAKER_00Right okay then, see you next week. See you next week. Bye bye.