#8 Kat's story - Something every mother does leaves her in a wheelchair

Meeting Kathryn Paylor-Bent was a great experience and I'm lucky to share it with you.

An injury when Kat was a young Mum left her in a wheelchair. Despite her disability, Kat wanted to be a hands on Mum for her son. Very early on in the conversation it's easy to see that Kat's a fighter. She had to fight to get her sons autism diagnosis and fight for what's right for her and her family.

Kat is a big advocate of adaptive fashion and started her own business Seated Sewing in March 2020. Please click the link below for more information on Kathryn Paylor-Bent

Kathryn (Kat) Paylor-Bent | LinkedIn

Voiceover for intro and outro by Jennie Eriksen | LinkedIn

Music granted free of charge very kindly by Music: https://www.purple-planet.com . The track is called Hope and Inspire.

Transcript

Scott Whitney: 0:49

Hello, everybody. Welcome to the next edition of the all for inclusion pod. Today I'm joined by Kat. Kat, how're you doing?

Kathryn Paylor - Bent: 0:58

I'm good. Thank you. Thank you for having me.

Scott Whitney: 1:01

No worries. Thank you for coming on. Can we start off by, by you just telling our listeners a little bit about yourself?

Kathryn Paylor - Bent: 1:09

That's okay. Yes. I'm Kat Paylor - Bent and I'm the owner and CEO of a company called seated sewing. 15 years ago, I was made disabled herniated a disc on my spinal column, and surgery to correct that went wrong. So, click of the fingers and I went from being a very active new mum with a six month old to bed bound, wheelchair bound, and disabled. So, yeah, I've got the enviable tasks have been on both sides of the wheelchair. And my son who is now 15, also, he has autism and ADHD and lots of other collections of diagnosis that that seem to come along with those two. So, just like myself, be on both sides of the, of the wheelchair.

Scott Whitney: 2:14

So, let's start off, you know, pre, pre the incident. What was your, you know, when you're kind of looking around and walking around? How much did you see people with disabilities? And how much attention Did you pay to people with disabilities?

Kathryn Paylor - Bent: 2:36

I guess I probably more than more so but mainly because I worked in hospitals as a care assistant. Yeah. So I, it didn't faze me, but I was always the one treating them and trying to make them comfortable and better. And it was always it caring. It always been in our family, my mom did the same, my aunt is the same. So disability and,people being unwell had never fazed me. But it came as quite a shock to the system when you go from being the one caring to the one being cared for. And obviously, it wasn't like us an illness that sort of came on gently. So

Scott Whitney: 3:34

I mean, you know, how did you kind of when it happened? Initially, the the incident itself as opposed to the surgery? What was your initial sort of thoughts, then?

Kathryn Paylor - Bent: 3:48

First off, I assumed it was a bad back and it will get better. And I thought with been it always goes through your head. I'm a new mom, nothing can happen to me. I'm pretty indestructible. I've got a baby. So you know, how can things change so dramatically. I was going to a private physio, who was fantastic. We've used him for years and I'd gotten a bit more function back in my legs and was pretty convinced that with a little more rest I would get over it and it was just it's just been struggling to heal. Really. Yeah. But you never ever imagine worst case scenario that that's not going to be the case. Yeah. Now that's my mind. Not that you go in for him for the operation. And and you wake up.

Scott Whitney: 4:50

Did you know straight away or you know, almost straight away that there was something wrong?

Kathryn Paylor - Bent: 4:56

Yeah, I knew. So I been on the ward a couple of days. So I'd watched ladies in my bed have the same operation that I was having. literally wake up from surgery, jump out of bed and be all boss like I'm in no pain. They're walking home at the end of the day and and I'm like, Okay, this will be me. And I woke up in high dependency. Yeah, Like. That's a bit strange. Okay. And it wasn't until I came to move

myself in bed and : 5:31

ike, I can't feel my legs here this. This isn't how this is meant to have played out. Yeah, I should be jumping out of bed and saying I have no pain and everything's fine. And then there was just, I was just aware of there being lots and lots of commotion around me and not really understanding why it was a weekend. So I had assumed for safety reasons or whatever the reason, pain control that they were, they were keeping an extra close eye on me. But the morning after, when things weren't improving the penny started to drop that. And when you saw the fear on the nurses says this, you sort of knew something wasn't quite. Right.

Scott Whitney: 6:29

So from waking up then. So someone told you exactly what happened. What was what also sort of timescale?

Kathryn Paylor - Bent: 6:38

Oh that was it a couple of days or it was a little while it was probably about a week or 10 days, I was taken back down to theatre, about a week later, just to be sure that nothing had happened. I had so many tests that were run in that interim week. But we found out later that the person who said they had done the surgery hadn't actually done the surgery, we just signed it off. And we never actually found out who had done the surgery. And I'd smell a rat. And I don't know whether it's because I was working in the hospital. I know how ward rounds go. I know how nurses in Iraq, and I've done that for like 12 years. So I could tell a dynamic that was going on every time they came in to me was different to how they were dealing with other people. And so I started keeping a diary. Yeah, every interaction that I had with a doctor or a nurse, it was written down word for word. And we started just collecting information because I just sends some that wasn't quite right. And yeah, I ultimately ended up nine months in hospital. Because they did another surgery. I then ended up with MRSA, which completely finished off my spine. I got another infection, which is to where what the bone that had left. So it all just Yeah, snowballed into catastrophe. Yeah, one thing after another,

Scott Whitney: 8:35

What have you done with that diary?

Kathryn Paylor - Bent: 8:39

I've still got it. I haven't opened it for a long time. And I tried to think what I wrote down the people in my thought process, and it was handed to a solicitor when we first tried to take legal action. But we, we were unsuccessful in bringing legal action. Because a lot of my notes had been removed. So there was no paper trail that could prove and it's just bad filing from the NHS was what we got told. So I have I have still got them. And for a long time any i i got really paranoid about visiting doctors and being lied to so at any appointment I went to, I wrote a synopsis of what had happened. But I got to the point where it's like, at some point, I've got to get over this and start living my life. Yeah. And I wrote less than less than my diary and just Yeah, terms with it and started living.

Scott Whitney: 9:46

That makes sense. So obviously, you've you know, like you said at the beginning, you've been on both sides of the wheelchair, but you've also been on both sides, being in the hospital bed and caring for people in the hospital bed as well. So I mean, when you was in the hospital bed at the time, what was your what was was your thoughts? And if you could go back now and speak to yourself when you was in that hospital bed? What advice would you give, give yourself

Kathryn Paylor - Bent: 10:19

my thought process at the time was very confused and blurry. I was on a lot of painkillers and a lot of strong meds. But I was very aware that every day I was in hospital was a day less I was spending with my baby. Yeah. And, for example, I didn't know he was walking until my mum walked him around the corner of my hospital room. And she's like, look, we've got his first shoes, and he's walking, that ripped my heart out. Because that's something that I was supposed to do. He went for his first haircut with her said his first words to her, and all of those you agree for, but I had a grief on my own in a hospital bed. And people don't understand that sense of loss of missing out on that. Yeah. But if I could go back now and actually speak to myself, I would say, I wouldn't swap being disabled for the world. And it is really random thing to say. But if I wasn't disabled, I wouldn't be doing what I'm doing now. I wouldn't be part of such an amazing community, and I wouldn't have met so many talented people. Yeah. And I wouldn't have found a passion for helping that I didn't think I'd ever be able to do because in my head. And you told by so many professionals, well, you disabled now. So you can't do that. And we you can't do that. And you can't do that. And you start to believe them, because they are the professionals. But actually, that's their opinion, you can actually do whatever you want. If you've got the mindset, you can do it. And so I just tell myself, get Oh, get over the physical disability, get yourself on an even keel. And seated would have probably been created tenure sooner than it actually was. Yeah. Yeah.

Scott Whitney: 12:31

Excellent. And then when you went home, what was your kind of support network like when you when you got home.

Kathryn Paylor - Bent: 12:42

And from day one, I've had absolutely amazing family support. So my husband has worked full time from it happened and he's never stopped. He visited me every day in the hospital, he's been to every appointment, and my health is very unstable. Even this afternoon, we had a bit of a Hypo situation, and it just takes it in his stride. It doesn't faze him, it doesn't scare him, he just gets on with it. My parents to their moved in with Nathan when I was in hospital to help raise my little boy. And family support has been second to none. Support from the NHS and from social services, on the other hand has been very sketchy, very difficult. And you have to fight a lot of battles, and it gets very wearing. And it just, it annoys me when you're at your most vulnerable and need them the more so that's when you've got to fight the hardest. Yeah. And that's when you have the least energy to do anything. So for 18 months, I lived on a hospital bed in my living room with no access to toilet facilities or water. And they were okay with that social services. They were quite happy for me to get a bed bath in a paddling pool. And I'm like this, this is inhumane isn't right. So, yeah. Those that are meant to be helping you through an incident that's no fault of your own. Actually, it's an I dread to think what it's like now that was 15 years ago, and it was bad. So I imagine it's, it may be a bit worse now.

Scott Whitney: 14:44

So sort of your son's your son's growing up and How involved was you with his with his schooling.

Kathryn Paylor - Bent: 14:58

So once I got out of hospital, we'd got the wheelchair sorted. I worked really hard because my first goal was I was going to take my son to school and drop him off and pick him up. I was going to be that mum, who was in the playground. And that's what I focused on. And I'm really pleased I did because now he's in a special school because of his autism, and I don't get to do that. It's all done by taxi. He gets picked up, he gets dropped off and I've got no interaction with any other parents. So I'm really pleased that when I could, I was able to be that mum that dropped him off and was always there. And I fought very hard for him.

Scott Whitney: 15:52

So how old was he, when you weren't either yourself or teachers started to identify traits and behaviours.

Kathryn Paylor - Bent: 16:01

So we had said pretty early on probably from about 18 months, two years that this that we felt there was something not quite right. But we were always told that it wasn't anything to do with him. And it was the fact that I was disabled. It was my disability that was causing his issues. And he was an only child, because my back soon was too unstable to carry another baby. And so that was an excuse. I had carers that came in. So we was always around adults that was given us an excuse. We were living in a bungalow at the time, which was surrounded by all these lovely old ideas who were like he had about 10 sets of grandparents. So that was given us an excuse. And we believed them because well, the professionals know what they're talking about. Yeah. And when he got to school, he was in the class. The Senco was his class teacher for the first year. And she just said he was a daydream a he was a solo interactor every excuse under the sun. And we're like, well, this lady is a same cause she knows what she's talking about. We have obviously like, we're overthinking everything. And it wasn't until the second year of primary school when an ed psych educational psychologists who come in to see another child that he said to the class teacher will when a man whenever I got an appointment with Tom. And the teacher said, Oh, no, no, no, you Tom isn't one of your children his mom's disabled, and give all of the reasons that we'd been given. And the educational psychologist said, this little boy's got autism. And they were like, no, no, no, he hasn't. And he's like he has and I'd like you. I'd like appointment with him. So we, we were shocked and devastated but also absolutely over the moon that what we had been seeing was finally had been recognised by somebody else. And it was nothing to do with my disability. Because that had killed me for six years that I had damaged my child in some way. Because of me becoming disabled and you and you live with the guilt of what how could we have done it differently? How, what if we had less care? Would that be better for and what if we moved somewhere else with a new sort of go through all these ideas and finally, someone was like, this has nothing to do with you, Catherine. This is Tom and this is the way his brain works and it's okay. It's a condition and a recognised condition. So it was a huge relief. Yeah, it must have been awful for them to or not for them to say it but for you to hear them. Ah, so horrific, absolute absolutely horrific. And, and we'd come out of meetings and I'd be in tears because it was always my fault. It was never Nathan's because Nathan didn't have the disability. And so the guilt of I'm disabled I've ruined my family's life. I've also room muscles prospects because well he can't read and write because I'm disabled now and that's rubbish. And it just completely Yeah, it plays tricks with your mind and your question every every decision you ever made. Should I have said no to surgery? Should you have self discharged early and you just go through it all and it was horrific. absolutely horrific. Yeah. And you know, it has a knock on effect to so many kinds of different things kind of relationships potentially with your family and things like that. When when they're at St. You don't blame yourself and

Scott Whitney: 20:27

it's almost one of those moments where you're kind of Clenching fists and biting your tongue or, or sometimes not biting your tongue and, you know, it's

Kathryn Paylor - Bent: 20:38

yeah, it's it's hard. It's really hard. And then it's like out I wanted to take it all out on the surgeon who I knew hadn't done his job properly in the first place. And now I'm being told that because he'd ruined my life, he'd now ruined my family's life as well. And it's like, and he sat there still doing the surgery thing, not not an ounce of apology, nothing and yeah. How can this out like, Where's your conscience? Yeah, yeah, exactly. So obviously, the, the educational psychologists came in, bang straight away, you know, we need to see Tom Tom, Tom's autistic, or has autism? How long did the process sort of take from from there to official diagnosis? Because I know sometimes it can take a while. Was it? Was it a while? It was a while? Yeah, it was two years. Yeah. Mainly because all of this, all of the teachers reports were? It's because his mom's disabled is not because this child has got a condition. Yeah. And fortunately, we ended up with a fantastic psychiatrist in comes, who had she kept Tom on her books for seven years. And she's been with us every step of the way. And she could see that it was nothing to do with how he was brought up or his environment. It was a condition. And she's been with us for every fight that we've had. And, and without her, I honestly don't think we'd have Tom in the school that he's in now. If we hadn't had someone actually, believe us. When we said it's nothing to do with us. Yeah. Yeah. And but yeah, it's still a long process. And like children can behave differently in school. So they behave at home as well. And that obviously, then just just kind of confuses things a lot more as well. Extremely. Yep. So Tom, because my health has been very unstable. Tom gets really bad separation anxiety. Yeah. And so there are times where I'll be putting him to bed. And when he wakes up in the morning, I'm not here because I've ended up taking a hospital with infections or seizures or a whole host of things. So Tom, separation anxiety is really bad. And I'd get him to school, and he literally have to be pulled off me because he didn't want to leave me because he didn't know whether mum would be picking him up at the end of the day. And he masked so well, in school school, it was a proper old fashioned country bumpkin school. Everybody loved him. And they made so many allowances for him. But his condition still shone through. And there were still times where it tolerate people saying things to him for so long, and then he'd give them a slight punch. And while he stood waiting for dinner, or indeed, his anger would get to a point where we just explored in class. So yeah, it was difficult. It was really difficult. But

Scott Whitney: 24:27

So was, was Tom diagnosed with autism and ADHD at the same time? Or did they not quite fit?

Kathryn Paylor - Bent: 24:35

No. So he was diagnosed autistic first. And it was a psychiatrist who said you should go for ADHD. And we said no, for probably about a year because in my head, if a child had ADHD, they were bouncing off the walls. And Tom was the most sedentary child had ever met. Like, he loved nothing more than just sitting in his room and making lines with his car or being in the garden pretending to be a farmer, this combine harvester. So I couldn't understand why she kept pushing for this ADHD diagnosis. And, and then we said, yes, okay, if you think it's important, and he came back with having it and we were so confused, but the older Tom's got, the more we see it. His brain never turned off. His brain is on 24/7 is constantly thinking about things and he literally it is brainless, overactive. It's not his body. And I think people concentrate on the hate you have ADHD too much and, and especially like you said, it's actually not the H in there in the mind is it's actually what they're doing.

Scott Whitney: 26:00

So how old was he, when he was diagnosed with the ADHD?

Kathryn Paylor - Bent: 26:04

And nine, nine.

Scott Whitney: 26:06

Okay, so both were still in, in primary school? Yes, yes. Okay. And then what was the transition like between primary school and secondary school because that can be quite quite hard for any child can it but obviously, with ADHD and autism, potentially harder?

Kathryn Paylor - Bent: 26:25

Well, not long after his ADHD assessment, we managed to get an HCP in place. With the plan being that school was going to get extra support for him. But they just weren't in a position to provide the extra support. So on the advice of the council, we put them into a special school which was just a generic Council run special school. Which I think was the worst thing we could have actually done to be honest, because it was also a school that was for expelled children. And we we weren't told this. Okay, yeah. So Tom's first first day at his new school with new people was a young lad coming in with a brick and smashing the the window in his classroom and telling the teacher who was in charge. So going from a lovely country bumpkin, very protected, lovely school to all of a sudden, with hooligans. It didn't go very well. Yeah.

Scott Whitney: 27:35

So how long did he How long did he stay in that school for?

Kathryn Paylor - Bent: 27:39

He was there for a year, then we went to court with the council and won a ruling to get him into a specialist autism school. Yeah. So where he is now is fantastic.

Scott Whitney: 27:52

And is that the school he went from that one to where he is now?

Kathryn Paylor - Bent: 27:58

Yeah. So they, they're really good because they work on transitions, they understand the kids inside out. And they put a lot of work in preparing them for whatever change. So every year, they know who that teacher is going to be where the classroom is going to be. And he's not honoured. A curriculum is not doing his GCSEs is on. I think they call them p levels. Okay, but their whole gist is getting them ready for an independent life. Yeah, so he's learning all the skills he'd need. So that when he leaves College, he's in a better position to be able to be independent. Yeah.

Scott Whitney: 28:43

And I guess like when you say they're introducing the new teachers and things like that, so case a lot building those routines nice and early, isn't it?

Kathryn Paylor - Bent: 28:51

Yeah, definitely. It is struggle. A lot of children with diagnoses like this struggle with change. And so it's just trying to get them used to the idea that something's gonna change and breaking them in gently but allowing that change to be part of their normal routine as well. Yeah. Because unfortunately life is like that, isn't it things change and and they've got to build up a resilience to be able to cope with that change. Yeah. So kind of going all through this kind of period what's what's life like for you during that that period it was difficult trying to balance my energy between not doing too much by myself which is partly why seated only started a couple of years ago because my whole focus was we needed to get Tom happy. That meant we needed to get him in the right school with the right support. And my whole focus once we knew that this was a condition I was just putting all my energies into getting Tom to where we knew we needed to be. Yeah. And then once he was there, I sort of took a bit of a step back my health wasn't great. So I had to concentrate on on my health for a little bit and then locked down came and we're like, let's start a company because what else do you

Scott Whitney: 30:27

Have a worldwide pandemic? Yeah. So So what's do? your then kind of interaction like with with Tom obviously, being a wheelchair user and lack of mobility and I guess lack of energy at times as well? Yeah.

Kathryn Paylor - Bent: 30:48

I think the only good thing is Tom has never known me any different. Yeah. So Tom was six months old when this happened to me. So mom's always been in a wheelchair. And anything that we've ever done has always had to be planned around my mobility issues.And I think you would have struggled a lot more. Had you known me as the mom that could play football and suddenly the mom that couldn't? Yeah. And is used to it. It was great when he was younger and littler, because he'd sit on my knee and you got to ride everywhere. So that was great. And I was this, I was this fascination in the school playground, like not everyone's mom had a wheelchair. So we'd put the kids on my knee and we take them from quick whizzes around the schoolyard. And, and it was like, my mom couldn't do that. But your mom can't. It was. It was a good talking point. And, but I think it gets harder, because the more you want to stretch your legs, the more adventures you want to go on, the more closed off the world becomes. So Tom loves going to the beach, we live about 20 minutes from the beach. And he goes with Nathan, my husband and the dog, but I can't get onto the beach. So if I go I enjoy watching them from either promenade, but then I'm like, I don't like watching them because I want to be there doing it. So I ended up not going and then it's so obvious certain activities. He loves going into the forest and going for walks. Well, my chair doesn't go there either. Very well. Yeah. So there is so much that so much more I love to do with him. But I cannot because it's just not possible for wheelchair users to do it. So yeah, it's not fun at times, but he understands. And a lot of the time he'll look at something and go, Mom, you can't do that. But that's okay. You go and have a coffee with me. And that'll do it. Yeah, we'll meet you later. So he does a lot of my records before I even get there. Like I've worked it out. You can't join us.

Scott Whitney: 33:18

Yeah, and then he's got the plan where to meet you afterwards.

Kathryn Paylor - Bent: 33:24

Mom likes a coffee. So it's like there's a coffee shop, go and have a coffee.

Scott Whitney: 33:29

Excellent. So what's the what was what was what was locked down like for Tom?

Kathryn Paylor - Bent: 33:37

Very difficult. Tom's mental health is not great. And we had assumed that this staying at home in your bedroom would have actually worked for him because on a weekend or holidays, he loves nothing more than just being allowed to stay at home in his bedroom. But suddenly, he couldn't interact with his teachers or his friends. And just the worry, on the news, you were always hearing about the statistics of how many was dying classed as extremely vulnerable. So the he always had it hanging over that well, if I got it, chances were I was gonna die. I have had it and I haven't died. But from because your brain never turns off. This is just constant in his head that this is what's going to happen. And so he did he really struggled in lockdown. As he's over playing all these like, you know, someone who's not autistic or ADHD might play one or two scenarios where he's playing hundreds of scenarios all the time. Yeah, and there was always this announcement wasn't it? If you're if you're vulnerable, you need to shelter in place. For the first lockdown, we stopped my carers coming in because well no one knew how dangerous this was. So we had to cope with having no carers which was hard as well. But yeah, this constant threat that was over the household that if it entered the house it was gonna be catastrophic. Yeah. And and his constant worry the year before we don't need just lost my husband's dad. So death was a very fresh emotion in his head. So then to hear of how many 1000s were dying every day, it was like he was feeling that grief every single day. One of those people. And it was Yeah, it took a big toll on him.

Scott Whitney: 35:51

Must have been really, really tough for him, but tough yourself and Nathan to watch as well.

Kathryn Paylor - Bent: 35:58

Yeah, because we can't fix it. And it didn't matter what we said. It didn't make him feel any better. And there was no, nobody had answers at first. So we were sort of we were trying to forge answers, but he's too clever, too clever, rezoned good. And he's like, You're lying. That's not true. You don't know what it feels like? Yeah, very, very hard. So he's back in obviously lockdowns over back in school now.

Scott Whitney: 36:36

Is he in the, like, the year? 11? The? I know, you said it's not GCSE. But is it the GCSE year? Or the year? 10.

Kathryn Paylor - Bent: 36:46

So he'll be going in yet? Yeah. We live in the levers? Yes. He's in year 10. At the moment? Yeah. Does that? Does his school go into past? You know, like a year 12 and 13? The a level type of years or? Yes. So he'll being in the school that he's in. He'll be there until he's 18. Yeah. But because of his ehcp. And there have to enterprises which are attached to the charity, he could be provided support to these 25 with them. Okay. So that is our hope is that he will want to get involved with the enterprise. And he'll he'll latch on to one of the two of them. Yeah. And you'll get support to these to these 25.

Scott Whitney: 37:37

And then what what's the what's their kind of plan like at 18, sort of 25, as you said about him sort of being fully independent? Is that independent to sort of move out and into the big world or to be independent, but still be with yourselves?

Kathryn Paylor - Bent: 37:55

Yeah, Tom will never be able to be to live independently. Yeah. So when we moved to the house that we're in now, downstairs was converted for me. And upstairs, we've converted it. So Tom has got his own bedroom and ensuite. And then we've turned another little room into his living room. So it's got a bit of a self contained flat. And he calls it his flat, so he will have his own space. But it means we can make sure we eat properly. He takes his meds, he has a shower. All of the things that he doesn't remember to do right now. But he doesn't. Yeah, he he won't have the ability to be able to live independently. Yeah. Okay. Okay. So we kind of got, obviously, we've been talking about sort of two separate things. And what I like to ask is what sort of tips you have for, for people in in similar situations, where we've got two situations.

Scott Whitney: 39:04

So if we talk about someone who's in a similar situation to yourself, first of all, what advice would you have for for people in that situation?

Kathryn Paylor - Bent: 39:14

If you are newly disabled, or you become disabled, there's only a part of your body that doesn't work, you don't stop being new. So be the person you were before you became disabled. act the way that you did. Express yourself the way that you did, and just make peace with the fact that there may be a part of your body that doesn't work, but actually you still, you're still you and be the bit that everybody loved you for pre disability. And it's nothing you can't do.

Scott Whitney: 39:55

And then what about advice for for parents with children with either autism or ADHD or both?

Kathryn Paylor - Bent: 40:05

Follow your gut. If you think that there is something not right then don't leave it like don't leave any stone unturned. check and double check until you get into the point where there's people are saying this is honestly there's nothing that we we wish we'd done it a bit more in a bit earlier, but as you said, with having two issues going on at the same time, trying to prioritise and fight hard because there's no one else gonna fight for your children. So if there's a particular school you want them in Take it as far as gone to court, make sure that you have fought as hard as you can, so that when, when they get older, you can sit back and go, You know what, there's nothing more I could have done, I couldn't have got you in or better school, or I couldn't have got you at any more support than I did. And use all the charities out there who are out to support parents whose children are autistic. And I think that's one of the key things is people don't think about using charities, or they think about the kind of big name charities only instead of some of the smaller ones, which which can really, really help. Yeah, and a lot of them are set up by parents who have already lived that journey. So some of the things you don't have to experience firsthand use their experience. They've they've done that. They've learned from it, and they've written a little PDF that you can read and you don't have to experience yourself. Yeah. Tap into their knowledge. Yeah. Okay. And you said about, you know, you've had lots of fights, lots of battles. what does that feel like? How can you kind of what advice can you give to someone who's either about to go into a battle or maybe exhausted from the battle and halfway through it. And my advice, if you're about to start it is document everything. Make sure any meeting that you've had, or any phone call that you've had make notes about who was there on what was said, and keep all of your letters. When we went to court with Tom, we went in with 250 pages of evidence, the council went in with none. So be prepared and No, no, , even to the point of making like a little timeline of the major events. It is exhausting. But just trust the process and trust that you'll get to the it will finish at some point. The fight will come to an end. But just trust that what you're fighting for is worth every single day have been exhausted. Because the difference you would see you'll see in your child after you've got the support that you're fighting for. It's priceless. Because we we actually got to see the real time the tongue that we remembered as a toddler, when he got into the education provision that was right for him. And that feeling of relief and success and euphoria that every day of the fight was worth it is priceless. Yeah. And that gives you the energy you need. Because when you have parent of a child with special needs, the fights never over. You're the Amaze, get a bit of a rest by but it never stops. So you've almost got a bottle of that feeling because you'll need that to keep you going on your next journey and your next fight. Okay, excellent.

Scott Whitney: 44:12

And there's one thing I haven't really touched upon, you've mentioned it a couple of times, but I've not touched on it. So I kind of want to finish on this is about seated. So tell us how it started, what it what it is, and where it's going.

Kathryn Paylor - Bent: 44:29

So see, Seated is a sewing company that I set up a couple of years ago because I couldn't find clothes that was suitable for wheelchair users and not on the high street. And I was having to make my own. So I started making my own then I started making for others. Tom has always just did really well to wet items or making blankets. And then parents would ask me if I'd made that child, that child so everything that we make insisted arising that we use ourselves in our own house so we make wet blankets because Tom loves them and does really well with him. I make skin protective has because I have feeding tubes and you get really bad irritations with his skin. So everything's been road tested and honed and perfected. And now we sell those today for the people's journey a bit easier. And we've also got a bit of an advocacy and disability influence line as well. Some disabled are very vulnerable and very quiet. I don't trust myself as vulnerable. And anyone that knows me, you know, I'm certainly not quiet. So I'm more than happy to do the shouting from the rooftops about disability rights and rights for kids with autism and yeah, and not let things lie when I know there's something very wrong and things can change.

Scott Whitney: 46:16

Right. Thank you very much for being that's a great great place to leave it today. And I think we've covered a lot of things and and hopefully anyone listening to this will will a be inspired by yourself in your journey. Be inspired by what you've done to support Tom and be inspired by Tom himself as well. So thank you very much for for coming on.

Kathryn Paylor - Bent: 46:46

Thank you so much for asking me it's it's been a privilege not a problem. No problem. It's been great.

Scott Whitney: 46:52

So that's it for the all for inclusion pod today. I hope you've enjoyed the episode. What I will do is I will put links to seated in the in the comments so then you can you can then look at the everything on there yourself. Thank you again Kat.

Kathryn Paylor - Bent: 47:13

Thank you