#19 SEND Warrior Mum vs MP

Marie Martin, aka SEND Warrior Mum making a difference; as she is known to her twitter followers joins me with her son Zak.

Zak is an autistic teenager, with a passion for smart motorways and power stations amongst other things. He has been fortunate to have gained some hands on work experience on the smart motorways and is hoping to gain some working with power stations in the future.

Marie has faced many battles over EHC plans, SEND, local government and even MP Will Quince. Zak has certainly inherited his Mums fighting spirit and he wants to see change !!

Co hosting this episode with me is Alastair Swindlehurst, from EZHR. Alastair is an excellent HR consultant supporting many businesses to get to the right outcome, in the right way quickly.

You can find Marie on twitter and linkedin using the links below

SEND Warrior Mum making a difference! (@martinimarie) / Twitter

Marie Martin | LinkedIn

If you want to know more about Alastair, links to his LinkedIN, podcast and business page are below

Alastair Swindlehurst | LinkedIn

The Alternative Business Review | Podcast on Spotify

EZHR | Making HR Really Easy

Don't forget to head on over to our website Home - All 4 Inclusion

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: 0:57

Hello, and welcome to the next episode of The All 4 Inclusion pod. Once again, I'm lucky or unlucky enough to have a co host with me today, we will be speaking to Marie Martin and her son, Zak, who have been smashing glass ceilings in getting things progressing and promoting all sorts of conditions for children, in particular with autism. But prior to bring him Marie and Zak on, I want to introduce my co host, or actually, I'll let him introduce himself. Alastair, how are you?

Alastair Swindlehurst: 1:50

I'm very well as I'm a co host, I'm not sort of a feature contributor, type person.

Scott Whitney: 1:57

No, I'm gonna put you as a co host.

Alastair Swindlehurst: 1:59

I take Co- host then marvellous, thank you very much. With such an auspicious introduction, I'm looking forward to this conversation. Cheers, Scott. I say my name is Alastair Swindlehurst. I've known Scott, we probably don't need to fret two years now. And I've kind of known Scott as he's been through his journey recently. And I've got my own HR business. So I kind of see some of these some of these issues that Scott talks about, from the from some of my side work with employers. And then finally, I've got a podcast myself called the Alternative Business Review, which works with kind of early stage founders to kind of talk about their experiences and understand what they go through how they experienced, what happens in that in that world, as well.

Scott Whitney: 2:48

Excellent. Thank you. Alastair. So now we're going to go to introduce the two people that people actually tuning into, to listen to as opposed to yourself. So, Marie and Zak, how are you both?

Zak Martin: 3:04

Doing good, thanks.

Marie Martin: 3:05

Great, thank you for the opportunity to chat to you. It's really great to just be able to get a voice get that message out there and raise some more awareness.

Scott Whitney: 3:15

Perfect, perfect. Do you mind just starting off really just telling us a little bit about yourselves?

Marie Martin: 3:25

Okay, well, my name is Marie, and I'm Zaks mom. I'm a full time carer and have been literally since Zak was diagnosed at three years old. And obviously, I began to notice few differences when he was just different, who was just different right from the very start to be honest. And so we've been on this journey for quite some time. And we're quite interested to to share it with you. That diagnosis was diagnosed, it's three years old, and with classic autism, and it was added to later with ADHD, and PDA pathological demand avoidance, although they don't use that as the official term. They call it the demand avoidant features, but it's all the same, and severe anxiety, trauma and tics. And it was statement to do three years old when he was diagnosed, but actually, our journey started quite a little bit before that.

Scott Whitney: 4:27

Okay, excellent. So, Zak, just before we really start going into the story. Can you just tell us a little bit about your interests, what it is you enjoy doing?

Zak Martin: 4:45

I enjoy video gaming, and I enjoy 3d modelling. Pretty much a lot is on the computer. I also like going out to different places, doing road trips and also seeing the hobbyist.

Scott Whitney: 5:02

Yeah. And where's you know, recently where have you been that there's been a highlight road trip wise for

Zak Martin: 5:08

Definitely Wigan. Well, not quite not quite at you. Wigan. It's at a place called Ashton in Makerfield. We had an overnight stay because we was paying a visit to extruder curb working on the M six junction 21 A to 26 Smart motorway scheme

Alastair Swindlehurst: 5:36

Okay, I used to I used to work on the corner from Ashton in Makerfield back in the day.

Marie Martin: 5:42

Yeah, no, I mean, just to put you in the picture. We we have an established relationship with Costian who are doing the junctions through the curb with the company who constructs the concrete barriers. And basically everything kind of and started with the Costain in the national highways, and people are starting to tap in and say how can we help? And what can we do? And Zack has impressed Costain consistently since he was about eight years old. And when he did a, one of the career day visits, so and that's a latterly it's become more and more visits work experience and their a fabulous truly inclusive company, and so on national highways, and other people are now starting to say what can we do? Can we provide some work experience and since that visit last week, we've now got another one and safe road. And they just said that they're gonna train and a gentleman there called Jimmy, who has been absolutely fantastic and, and he said, they are going to give Zak some training all in his own time. And so So yeah, it's about time that companies started to realise that there's neuro typical, neuro diverse brains are absolutely fantastic, you know, the missing out and Costain, but something that's very different is that is very unique. And they tap into that, and they think is amazing. In fact, we had an email a couple of days ago, saying we were going to come up see us at Newcastle, and do some work experience up there. So we're really busy on is at the minute.

Alastair Swindlehurst: 7:30

Awesome, amazing that I was gonna say in terms of kind of what they get you because I think it's really good because it's an opportunity to elevate people, which I think is a big part of this. What are they getting you involved with Zak?

Zak Martin: 7:45

Getting involved with? Well, the getting me involved in also, in terms of like, well, like long story to be honest,

Marie Martin: 7:57

Do you want me to try and explain a little bit. Sometimes that is Zak can struggle, unless he's talking to people literally about his special interests is autism in this PDA. I'll give him some problems. But yeah, what they do they provide him with work experience in different departments. So he does work in the BIM software and the design. And in the implementation, I do site visits. And he'll attend remotely meetings at the setup to sort of discuss ideas rubber stamp, then it was almost like a sometimes like in a proof type situation. Has anybody missed anything has ever been gone to plan? So yeah, so a whole host of things, to be honest, is worked in the camera rooms, is pretty much everything within the organisation. And whether it's drainage lighted, you know, we, we spend time in all the different departments.

Alastair Swindlehurst: 9:00

It sounds really well rounded in terms of an overall experience. And I think one of the things that I think because of Zak 's autism, it's kind of interesting, he said about kind of, he gets put some positions where he sees how people react to when things don't go right, as well. And kind of the impression is kind of is it helping sort of him to raise awareness and develop skills in that space as well to kind of kind of understand that bit more.

Marie Martin: 9:27

It's everything Alastair? And I mean, we were in a dark place when I contacted Costain four years ago. And initially it was done as a favour. And to me is acts in a dark place. I don't really know which way to turn. Can you help? And can you remember the kid from eight years old who who asked you a question on a careers day and you couldn't answer and they gave us an open ended visit? I gave it to four different schools. Nobody took them up on the offer. And obviously, when Zak was in a dark place, I had to think very quickly outside the square what can I do? And Zak, its intelligence, his thirst for knowledge. Really impressed them. We thought it was going to be a one off day. And but it literally grew and grew because as the more departments they walked him around, and the more knowledge is shared, they're absolutely astounded by it. And and then obviously the personalities to come into that. So it's it's been twofold. It helps that with his education. It's helped Zak with his confidence. Zak's independent Speech and Language Therapists, Heidi Keelin actually wrote and said this It's astounding the videos that I've watched him with when he's talking about his special interests, and how different you know, his communication is, and he suddenly becomes very at ease. It's almost like someone who's got a stutter when they talk or when they sing a song they love they don't. And that's how Zak is they'll struggle on a one to one but show and they've started to show him solutions. You know, we're struggling with this bit. What do you think? And he was like, oh, yeah, yeah, I've already thought about that. Please, spare time it's written this plan on his iPad or whatever, just because he absolutely loves it. So on the back of all that, it's helped us to have a voice. It's helped Zak with his self esteem, his mental health. And, you know, the warriors, the local authority, withdrew of funding for the second time in four years, last October. So I lost that personal assistants for the second time in four years, which is a real shame, because actually, in the last 12 months, that's really flowing. He's got his first certifications. And he's done his English from his basic to advanced, he can programme Excel spreadsheets, his passed his driving test, theory and practical, in fact, to pass your driving test is practical driving test with not a single minor fault. And so it's absolutely flown. And they've actually given this, these situations have given us like self esteem and a voice. And it's given us the opportunity to give other families hope, because I know how it feels when your child turns around to you. And it was only four years ago that Zach said to me, I just can't face another day in the system. Mum there is something I've got to tell you. I've been looking at ways to take my life, because I don't want to get you into trouble. And I know kids have to go to school, had been sick from anxiety for a few weeks before. Parents don't know what's available out there. So it's given us a voice to be able to say actually, there are things out there that you can tap into, it can make a difference. And we've overcome all of that adversity from Zack being in a very dark place four years ago, to actually impress in huge multinational and everybody wants to help. Everybody is astounded by his knowledge wherever he goes, whoever he goes to speak to. And that's all the love apart from smart motorways is electricity pylons and power stations. They haven't even attacked those marketplace. But yeah, I think it just gives families like us hope that you might be in a terrible place and not be able to see the end of the tunnel. But actually, there is some light, think outside the square, do your parents are the expert on their children. And don't let anybody tell you otherwise, you know your child better than anyone. And you can make a difference by doing things differently. These children and these young people who are neurodiverse, they don't fit into a box while one one box doesn't fit all. You have to think differently. And you have to tap into the special interests. And I can't express how what a difference that's made. And as you say, you asked me well, you know, has it what a difference it's made. It's made a difference all around really. And I think it's improving the way companies look at these neurodiverse brains. And under the inclusion side of things, because although there's a certain amount of inclusivity usually you've got to have a degree before companies will even look at you. But for children like Zak is struggling to do any formal type of education that people are missing out. Because they don't need a degree because he's better than the people who've got degrees his brain is

Zak Martin: 14:52

Elon Musk once said, you can still have a bachelor's degree and still be an idiot.

Alastair Swindlehurst: 14:58

I completely agree with that statement. I've come across them often enough idiots in this life. And I'm pretty sure most people got a bachelor's degree. In fact, I think most people got PhDs to be honest.

Scott Whitney: 15:09

I think I think also lived experience goes a lot higher than the degrees and education and having that kind of that experience that that way of thinking and the way of working to to advance things like the smart motorways, the pylons, the power stations, you know, that's not necessarily something that you learn completely from a textbook. Can we go back Right to the start, if that's okay, Marie, so you know, what it yourself that that push to get Zak tested, or was it picked up in, in like a preschool or anything like that

Marie Martin: 16:03

It was me. I just knew who was very, very different from the start. I mean, before he could sit up, he could work one of the little play centre, and that you turn twisted knobs and carried them through and things he shouldn't be able to do. It was so far advanced, it was on true, but it couldn't actually sit up at this stage. And looking back at the photographs, it really showed even then, and but I went to the doctor when Zak was very young. And I explained that I thought that maybe a touch of autism. Obviously, the information wasn't as widely available then. Because it just wasn't, I didn't really understand it. I've got a friend who was a school teacher, I asked her, and she said, you know, the maybe a touch there. And but the doctor just turned around and dismissed me really he said, Well, I don't think that the child's got autism. I think you just need to adopt Supernanny tactics and be a bit stronger with him. And he said in anyway said, if it was I can't give you a pill for it. But I can just remember feeling just completely gutted. But then my inner strength, actually saying to this doctor, who don't speak to me, like I'm an idiot, a pill now wasn't expecting a pill, probably a bit of guidance, a bit of reassurance, a point in the right direction, but no, definitely not a pill. But I can say I'm speaking to the wrong person. I won't bother. I won't waste your time anymore. But just please don't put me in that manner. Now two things could have come away from that meeting. If I'd have been a different sort of a person, I could have said, Oh, well, I've asked the doctor and the doctor said he's okay. And I wouldn't have put the wheels in motion that I did. And I didn't, I rang the health visitor and I said, Can you come and see us, I went back and trolled the internet. And I just kept looking for research and information. And I don't can't remember how I found it. But there was a tip list. And that ticked every single box on this tick list. And then I just knew, or anger or sobbing uncontrollably been to the doctors, he's dismissed me. I know, I know, he's autistic, and I need some support. And it's kind of went from there really, I also had to dig out at the local playgroup and which was like a breed preschool situation. And she was a an old friend of my mom's. And we've grown up together. And she understood a little bit more well, a lot more than me at the time. But she laughs now and it says flipping out, you know, you know so much more than me now. And, and she helped sort of to navigate the situation a little bit more. But it was just so different to other, my other friends children's. They didn't want to mix. He was spinning plates, he was lining things up. He was what I now know to be stimming by flapping his hands. And I didn't know how to handle that to start with. It was all new, there was no information. And certainly nothing like there is now and I panicked. I didn't know what was gonna happen to him. I was scared and I've got no one to talk to. So yeah, it was a really isolating time even my family said, Why are you trying to make out that there's something wrong with it, and there's nothing wrong with him. And, you know, why are you making this up? But I just knew deep down in my heart that something was right. And I'm so glad that I pursued it because the early intervention is always the best. And and when he was diagnosed at three years old. I remember the paediatrician turning to me and said, Well, you know what it is now get on with your life and never amount to anything. Here's a bottle of amitriptyline take between two and 10 mils. I'll see you in six months and see how you get on. I was horrified. I was kindly asked to come in and remote in a diagnostic nursery, and use your social care and get on with your life, Marie. Because at that point in time, yeah, I was a career woman and in telecommunications, and how it started to open up a whole new world to me that was quite shocking and has been shocking, ever since. And then I went back six months later to see this paediatrician who asked me how I was getting on with the amitryptiline to live and I said oh haven't used it. And it almost turned into an argument. And well, if you're not going to listen and take on board what I'm saying, and I said, I have listened, and I've taken onboard everything you've said, but at this point in time, I don't feel like I want to get my three year old amitriptyline. So therefore, I'm going to do a lot of research and try and manage this behaviour for as long as I can, you know, exactly just take medication now and has done since he was eight years old. But there's a time and a place for it. And sometimes not saying all experts, but sometimes experts will send you down at a certain path. And and I don't think anybody should be made to feel guilty because they've want they want to try it their way. We've always done things differently. And actually, it's always worked for us.

Alastair Swindlehurst: 21:34

I think one things, and I suppose just sort of diminish my children, it's kind of it's the if you feel like you get the right signposts as you go through that process. And it's I think, I think there's a big part of feeling listened to, as you go through that process. And I presume that's kind of that's really kind of, in some respects, probably really driven you but also kind of it's kind of configured how you feel about things at the moment, and kind of how and how driven you are at this moment in time as well. Yeah, well,

Marie Martin: 22:02

It's, it's started like that. And it's continued like that. Alastair, it's been a constant battle. And the government gives us these make these laws is legislation, child and Families Act, but there is no accountability. And there never has been any accountability. The give us an EHC, which is a legally binding document. We've got a watertight one, we still ended up with no support. And the options are to go to battle, again, to go to court. It's It's shocking, the longer I've been in the system, I think, and the more I've uncovered it, it astounds me absolutely astounds me that these local authorities can be allowed to, to get away with what they get away with. And they lose 97% of tribunals. That's shocking. That's public money that's wasted. And yet they turn around and say towards, don't waste money. Don't do this, don't do that. But they don't really care. You know, that he says that the personal budget is jointly delivered by our local authority, and myself. And all I've ever asked them to do, the only thing they've ever done is pay. And then we've lost that twice. And it's ended up with lots of formal complaints. I had 8, at social care in 2017, I had eight counts, upheld. And they said they were going to learn from it. 18 months later, they withdrew the social worker whilst he was on a child in need plan, and didn't discuss it with his professional theme or myself. His is that psychiatrist wrote to the head of service there, say in his outstanding actions, he needs a social worker Zak was being groomed online. It really, it's just horrific. And it can all be avoided with accountability. But we have nowhere to go there's people re mortgaging the house and taking out loans, just to get the local authorities to provide the support that's in that legally binding document. And I said to work with it's it's crazy. It's crazy. It's all there. What are you gonna do about it?

Scott Whitney: 24:24

And what do you say that and you say about local councils and things like that, saying about we'll learn from this? That's almost like a copy and paste paragraph, isn't it? That gets put in there. But um, that we've got here. Warrior mum. Now, Zach, you know, your mum's obviously done a lot of fighting. What? What feelings what what do you think of your of your mum?

Zak Martin: 25:00

Honestly, I'm really grateful for what she's doing. And I wouldn't be here without it. If it wasn't for me telling my mom about me wanted to kill myself. I wouldn't be alive right now.

Scott Whitney: 25:14

I think you know, I think it kind of, you know, hearing that it really hits home exactly. The amount of work that that you've done for that Marie and and also as a role model for for other people as well. And obviously when when when times were tough that yeah, how easy was that conversation to have with your mom?

Zak Martin: 25:43

Not very easy because I thought Either she wouldn't believe me or she'd send me off to be sanctioned. Yeah, yeah. Correct. mental health treatment?

Scott Whitney: 25:57

Yeah. And and throw that question the other way. How proud of Zach? Are you, Marie?

Marie Martin: 26:08

Do you know what everybody who knows me knows are proud of him is amazing, is absolutely amazing. He's proved everybody wrong. And he continues to prove everybody wrong. And for that, to be able to sit here. And to to even attend these meetings, I mean, he'll be nineteen in a couple of weeks time is he's just grown from strength to strength from that unruly child that nobody gave any hope to, to being able to be eloquent, his feelings have started to come through, and he's starting to understand that he's overcome every obstacle. I mean, his diagnosis is very complex, and his intelligence sometimes masks his diagnosis as well. And it the thing they told me four years ago, it was it's the one thing that No parent wants to hear. It's the worst feeling and, and I start to even, yeah, every I can't even say it four years later, I can't, I still can't say that, that big lump coming in my throat. And we're just starting to lay by and, and but I'm so proud that he trusted me enough to tell me what he was really feeling. And the sad thing is, it was it was doing it to try and protect me because this school refusal, lark, it's, it's quite huge on Twitter, actually, at the moment, and the masking our children are in school, and then people don't believe them, let's say the teachers will say that the kids are fine in school, when actually they don't see the real behaviour, because the child masks all day to fit in. And then when they come home, though, they're in the safe place, and they get unruly. So, you know, people have got all of that to deal with, we've got enough to deal with without having to battle constantly. Because we're still trying to keep our children on the straight and narrow. We're still trying to understand things ourselves. We're not doctors, we're not nurses, some of us are, we're just mums. And we have to learn on the go. And it's a massive, massive steep learning curve. But I think Zack, and I've got a fantastic relationship, you have to be really close to get through it. And there's been times that even I've wondered whether we're going to get through it. It's and that is spoken from the heart, I wouldn't like to think I've got to do it all again. But we're determined to prove them wrong. And we're determined like my name on Twitter, so don't worry, and we're making a difference. We're determined to do it. And I've wanted that on board with me for a while. And now we started to do it. And because the town's voice, the young person's voice is the most important thing in the world, really. Parents can say whatever. But when it actually comes from that person is so much more powerful because he's living it. Well, we all our family, it affects the whole family. Really

Alastair Swindlehurst: 29:05

think you mentioned before? So there's a lot of things that aren't happening in the system that that you'd like to see. What kind of thing would you like to see happen immediately at this moment in time, which would help the sort of the you in the future

Marie Martin: 29:20

Accountability for the government to step up and hold the local authorities accountable? And if there isn't enough funding there and make sure the funding is there? If the funding is there, and it's not been spent correctly? For what it's been spent on? Then they need to address that. To give some some parents some power regarding the EHC I mean, I asked Will Quince Are you going to give us Legal Aid then to take them to tribunals and what have you, because sometimes it's a choice between being able to afford it. And it shouldn't be every child's entitled to an education and a future. Some need more help than others.

Zak Martin: 30:00

Never be mandatory by law.

Alastair Swindlehurst: 30:03

Well, if you've got that sort of legal backing on that, but

Zak Martin: 30:06

And I want that ending

Alastair Swindlehurst: 30:10

And when you when you spoke to Will, and you ask the question about legal aid, and just putting more support in place. What was the response like?

Marie Martin: 30:20

Oh, well, he just said, Well, you know, I can't do that. And I said, Well, that's what needs to change. And accountability is the massive question because we can go through there's lots of things that need to change within the system, that actually accountability is the biggest one, because without accountability, they can make as many laws as they want. They can review as many papers as they want. You can do as many children and families act as they want. But if nobody's going to hold them accountable and make it happen, then it's we're just going to continue in this situation, aren't we? And parents have to go to tribunal. That is 96% of the tribunals. There's got to be something wrong somewhere in there allowing the local authorities to saving the money, because they'd rather need people that witness solicitors really, because

Alastair Swindlehurst: 31:12

not feeling Yeah, yeah, they want to

Marie Martin: 31:14

do that, just that just saving money all the time, because they ghost you, it takes 9 to 12 months to go to tribunal. And nobody's accountable. They don't say, well, actually, we're going to extend a time that you've missed by 12 months. So it's all a big game, and it needs to start just needs to stop right from the very top, and an accountability every time for me. And I've had a couple of meetings recently, one with what both for disabled Children's Partnership, and were Mary Foy and several MPs were there. And another one with the Department for Education, and about the sick of hearing me talk about accountability. But who is accountable, you go to the ombudsman, there's a massive list, we're on the same list as everybody else. And it gets thrown back to the local authority. After got outstanding complaints from 2019. It's gone externally twice. And the guy after two and a half hours came back in and said you've got too much ammunition Marie, I can't deal with I can't I can't deal with this is supposed to be an independent person. But it worked for a fostering agency in a nearby county. You know, how is that completely impartial, it's not impartial in my eyes, there was a touch typist, they're doing the meeting, I said come over a rough transcript to have a look over and sign it and take it away. I know that the proper minutes are going to come out in due course, no not allowed. And then suddenly, the minutes will go missing. And they're not correct. And it's a bit again without going to the High Court and having so if there's any nice rich businessmen out there who want to help me fund it and take this. I did a small request. And last year, which revealed atrocities, it just wrapped for disability discrimination without a disability, just statements. I mean, internal emails from a commissioner saying, I don't think it needs an EHC now is 16. And at the end of statutory schooling, let alone a personal budget. I mean, the EHC goes from zero to 25. That is disability discrimination. And he's the man signing the cheques. So what chance do we stand really, you know, I spoke to the head of SEND, they agreed to investigate and then they go sideways. It's it only needs to stop. It's not acceptable. And in an independent business, there won't survive it. And most of my Your staff will be on disciplinary to work for me. But I said I have to give up my 50 grand a year job to come and do yours to look after my son and provide him with the future. But at the end of it a carers just left with a pension credit at the end. Which is just just terrible when you when you look at the work you've done. If this has been my own business, I'd be a multimillionaire by now the amount of hours and time that I spend trying to make that difference for Zak and other children and trying to trailblaze and break down some barriers and say come on companies, if every one of you just took on one person or what a difference would that make this finding people that want to make the difference and do care?

Scott Whitney: 34:38

Going back to going back to the minutes now. Alastair as a HR person

Alastair Swindlehurst: 34:43

You have a really awful question I can I can feel it brewing,

Scott Whitney: 34:48

or No, I can think of one if you like. How important are having accurate minutes of meetings like, like the ones Marie and Zack cling to

Alastair Swindlehurst: 35:04

It's essential, is absolutely essential to finish you ask this question, because we're going through a disciplinary process this morning. One of the first things I was saying about putting effort is that make sure you keep good, solid, well documented notes at the start of it. And I think one of the things I'd say is, is about the sense of transparency that you talked about there. And I think whatever. I've kind of dealt with kind of difficult situations all through my professional career. And I think those you can never commit to making someone happy but you can commit to being open and transparent in the way that you do things. And there's a sense of equity See, when you do that. And I think one of the things is we're talking more things almost about it's kind of if there was just a sense of Actually, everything was shared, that the challenges that may be the kind of that the local authorities faced into were shared. And actually, if you can correct so a hive mindset that way. And actually can you find solutions together rather than kind of almost kind of drawing battlegrounds and kind of getting into into butting heads and it become, it doesn't put the, the child at the centre of what you're trying to do.

Scott Whitney: 36:20

And ultimately, it's the child that needs to be at the centre each and every time without a shadow of a

Marie Martin: 36:29

Well, they do say Every Child Matters don't leave doubt. the childs and most important in your person's voice is the most important in the legislation. But it doesn't happen. Because again, nobody's accountable to the guideline guidance, and the law. And it's the local authority and the sound issues of quite possibly the only thing I can think of who can break the law, and then it's not classed as criminal. You know, if you don't pay a speeding ticket, you're soon in court and make to pay for it. Whereas with the SEND, nobody cares, the kids are just left I've got a friend who's whose child who's I mean, He's a year older than Zach. And he's not had an education for the last, what, five years, and we're quite happy to just leave him in his bedroom his Mom doesn't know which way to turn, I've had to go at speaking to the local authority, and try and give her a dig out. It's just shocking how, and I call them they'll pick up pick up children. And then we're going down the wrong path here, depending on the vendor centres. And it's just again, thinking outside that box and creating opportunities. But there is nothing for the children, when they get towards the end of their education, there's no transition, the transition into adult care doesn't really happen. The legislation states that children's services should continue until the adult services is seamless. And the support is continued. just doesn't happen. We've had nothing since last July,

Alastair Swindlehurst: 38:11

I think one of the things I've come across a couple of times and in terms of my professional career, I met Justine Greening a few years ago, she Conservative MP she with John Dyson, who started the big issue. And one of the the agendas was actually about kind of just training and encouraging social mobility with businesses are kind of generally and they recognise that there wasn't enough support in business in sort of from the government, for training development of young people. Unless you kind of hit a certain sort of size and shape of individual, then you will you can, you can affect the system as a consequence. And they felt they had to turn around to business as businesses to help with that, and whether through donations are doing more or running their own programmes to do things. And it feels that kind of you kind of washed up in a similar sort of place in terms of not as the MP, but is it kind of invested parents saying, we need if we're not going to get the support from government, we need to find other ways to do this. And the businesses that you work with to kind of almost create a kind of like a test case to say it kind of we've got some really good young people. They just, you know, they're just the prism of work, the way they look at the world is just slightly different. And if you help them find that way to look at things you'll you'll get a lot, get a lot out of them.

Marie Martin: 39:43

Exactly. And that's what we've been trying to do. And certainly I've been trying to do is to show what's possible and try and break down those barriers and open up new opportunities. Because if they can do it for us, then they can do it for for other children and young people. And and it works. It really does work so well. So yeah. I mean, but you're always giving I'm always given a choice about self funding like last week. We couldn't afford to be not last week, the week before we couldn't afford to be late for extruder curb because they were starting. We've got to be there for just after nine o'clock near Wigan. We're in Derbyshire. And so I had to fund a b&b and it cost me about 50 quids worth of fuel to get up there. In February we were invited as VIP guests of Costain to go to the national highways award ceremony. They, it was a new experience for us, I had to hire Zak a suit, black tie to go out and get a dress because none of my when I used to work, I didn't fit in them anymore because I'm older and fatter.

Alastair Swindlehurst: 40:58

And we've had a pandemic as well, which is not been good for anyone

Marie Martin: 41:03

True. But again, it's Costain actually paid for the hotel. But I still have to stump up for the diesel. Yeah, don't work. I'm a carer. And so everything's a trade off, and everything's a choice. And as I say, these businesses do step up. But it's just shockingly sad. The fact that the local authorities whose job it is to support us, and social care to provide these opportunities. For as I don't, as you say, I've had to go to independent companies who do give us a dig out. And when we go to Costain, and the Mark Bell, the director there said, our chair in the room, you know, come up for a couple of days, it's a long way. And it's going to be at least two and a half hours for us to travel. But they they're just determined to make a difference. And, and the lovely, they're really, really nice people. And what we didn't know was we were getting we've got a surprise shout out for our invisible difference, raising awareness, actually at the award ceremony. And I've got the video of that. And that was a complete surprise to Zak and I. But but wonderful because everybody in that room is listening to hidden disability awareness and disability inclusion. And we've done a couple of presentations to Costain on to national highways, raising awareness to their people online. So, yes, we're doing we're doing quite a lot. We're doing as much as we can.

Alastair Swindlehurst: 42:43

I said, that's, I think that's also you can do as much as you can, in my opinion. And it sounds like you're, you know, you're going for a health whether you are making an impact, as well.

Marie Martin: 42:55

Well, let's hope so, because because of the small steps, everything's kind of grown and then obviously Scott approached and said, Would you be interested in doing this podcast and I'm not that well known on LinkedIn I've been I'm only just getting to grips knowing how to work it for ages I couldn't even upload photographs properly I don't know why that Twitter I'm I'm a bit more ofay with but this time last year, I couldn't work that either. So you know, these things are growing and we're spreading awareness together. And the amount of messages that I get from really credible people and private messages saying what you don't know is my my daughter has autism what you don't know is my son has autism. And I'd like to share with the fact that I know how you felt four years ago but I wasn't I didn't get to my child soon enough I've got friends who've lost the children and whose child didn't confide in them so it's it's a huge support system. So I think it does lots of things. It shows the the battles that we have it shows that the adversity that you can overcome the doors that you can open and hope hope for families like ours because four years ago we haven't gotten any we've just absolutely exhausted everything and and no parent that's hard to recover from when you've heard that because you're constantly then watching for your child or young person showing signs of going down there. But since we've we've had this personal budget for four years it's been amazing not one single panic attack has like had and yet he was having them so that he got pains in his leg screaming and I was having to message his psychiatrist when you get this message because it's in the middle of the night when you get this message tomorrow morning. Can you bring that down and what to do so so yeah, it's yeah, we've turned things around and we want to keep turning things around. And it's just like I say we've met some really really special people on our journey and Richard pad has been amazing for the last four years not forgetting Chris Hydey it all started with.

Scott Whitney: 45:28

If you was going to just send a message out to businesses, what would you want to see businesses do better.

Marie Martin: 46:01

Proper inclusion, not just a walk around, as I hear some companies doing not just going into maybe a special school and ticking the boxes, really creating opportunities, and reaching out to people and seeing and making reasonable adjustments. And when I've just had a conversation in the last couple of days with Jimmy at safe road, I keep getting that mixed up actually. So I hope I've said that the right way around. And and he's going to come in and get Zak through some certification, some health and safety, of free CICS card, I've probably got that wrong as well. But it's an industry construction, industry standard car. So it's, it's just people giving their time, their thought process, not just ticking the box and signing up to inclusivity. But showing proper inclusion, right and interviewing people differently. Not expecting them to because some people have got skills, but they can't cope with the interviewing skills. They wouldn't get through an interview. And, and also sometimes the entry levels of needing certain qualifications. That hasn't been any of those qualifications, but he can hold his own and he can do the job. And I think, yeah, just trying to make that difference. And, and thinking outside that square and communicating and reaching out.

Scott Whitney: 47:41

And Zak, what do you think, instead of a sit down interview? What would be the best way for business to see the best of Zak

Zak Martin: 47:55

To contact me through messages to be honest.

Scott Whitney: 47:58

Yeah. So like a live chat type of situation?

Zak Martin: 48:04

Yeah, possibly. Yeah. Excellent.

Scott Whitney: 48:07

So that is something that if there's any businesses on board, listening, that they will be able to sort of tap into, into their and Alatastair obviously, you work with, with a lot of founders. What's the sort of inclusivity that you've seen with the various businesses that you've spoken to on your podcasts?

Alastair Swindlehurst: 48:34

I think I think I think people are getting their head around this more and more at the moment. So there's such a one lady on my podcast called Amy Newton. And she runs a organisation called inclusively tech. And she works with companies big and small. And they come to her. And she provides a number of different things. It's everything from curated information, which is podcast books, just general things they can consume, to help them understand a little bit more. And they also should also do consultants with businesses to kind of embed yourself or team to look at processes and how you improve things. So one of the things that Amy talks about is because of her medication, she's not great at sort of doing anything before before sort of late morning. So she can have an interview. She needs that interview in the afternoon. And then kind of she's kind of with the world on that point. And I think it's I don't think there's any big fundamental shifts in what they do. I think it's more open ended questions in terms of Do you need help and assistance? And I think it sorts of stuff, where from the top tokenism as well, I think if there's a genuine intent behind that, but I also think that we, because we're talking about issues in terms of neurodiversity, and disability, I think just in general, more openly is that I think people are feeling more confidence with the hands up to say, Yes, I do struggle, or I do suffer from particular issue, and then need a bit more help on this. So I think people are asking the question a bit more. But I also think some people feel empowered to do that. And I'm constantly using the word some because it's not all. We're not quite at that point to share.

Scott Whitney: 50:17

And I think when it comes to kind of inclusivity, there's there's lots of different areas that you're looking at. So you're looking at, you're looking at gender, you're looking at race, sexual preference, and sometimes I feel that that disability kind of sits at the bottom with some businesses and using that Word, again, some. But I also feel that if you look after an employee with a physical disability, they will be more loyal to you. Because they know the grass isn't always greener. If you hire someone who's neurodiverse, what you will see is that you are starting to open up to lots of new ideas. Because going back to saying, you know, it's not about what's in the box not about looking inside the boxes. It's where is the box? And do you then sort of in a situation where, hang on, if I want to hire a team to think like me? Why would I want to do that? Because they're gonna think like me, you know, I haven't asked Alastair to come and co host this podcast, because he thinks like me.

Alastair Swindlehurst: 51:53

We think very differently about a lot of things.

Scott Whitney: 51:56

We do think differently

Alastair Swindlehurst: 51:59

One thing, and I was I was doing something, I was on a panel the other week, and someone said to me said, they asked about jobs, but job seekers on should. Business owners educate themselves, more on sort of diversity and be more inclusive. A big thing for me was actually, job seekers. And I, regardless who you actually, you've been empowering yourself to go and look at the widest possible base of businesses. And just because someone's a big sexy brand name, doesn't mean it's the right business for you. And actually, you should look at the business in terms of values, behaviours, what they do. But the big thing for me is that you take international women's day, if they've kind of corralled all the women in the business to be stood on stood in a room and you take a photo, and that's the only time that you see kind of, they talk about that, you probably know you're in a tokenistic business in that space, but actively seek out and if you've come across a business, who you sat there and thinking, Oh, I'm not sure it's the right behaviours block off for that business, because they're probably not gonna be the right people, you wouldn't have said that your personal life. So don't have said that in your, in your sort of your working life, as well. Really seek out those businesses that get it get you and will elevate you. And I think, you know, you're aware of some of the sort of the podcasts and like, I work with a charity, which works with black owned businesses. And one of the key things we talked about is elevation, but it's elevation, not just purely for the black community, but it's for everyone. And it's just the more we get people on that level playing field, the better we get. And I think you, you should not be afraid, as a job seeker, to say, You know what, I don't think you're the right person for me and walk away. Because you've got to you've got to do right by yourself in this.

Scott Whitney: 53:52

People sometimes say like, I'm not a website's like, like a shop window into a business. Now, one of the things that's frustrated me is looking at job adverts, and you see 10 people on on the job advert, and let's just say they're all white men. Let's say there's a mixture of men and female mixture of race.

Alastair Swindlehurst: 54:22

There's a phrase for that , male pale and stale. So if it's all if it's all the same, yes.

Scott Whitney: 54:29

And they're, you know, it's how many people do you see in a wheelchair? And how many people do you see that? It's showing that they're open to people who are who are neurodiverse? Say, sometimes, yes, these sort of independent businesses that they take more care?

Alastair Swindlehurst: 54:48

Yeah, I think as well as I think all the resources out there for people, I think people do it kind of overt, well, you've got the votes over stuff through like Glassdoor. I always say take that with a pinch of salt. You'll see various bits and pieces, but also look at like Twitter feeds, Instagram feeds what they put on LinkedIn, because it all tells it it all tells a story. It tells a picture. I think if you look hard enough, and you keep on looking and actually asked questions, asked questions about the support you'll get. We've all got enough kind of spidey senses, as I described it to sort of say, you know, when you've been sort of like, led down the garden path for people in got, I don't quite believe you. And as I said before, if you if you don't think it's right, walk away because if they really want you and they see the value in you, they'll come back and they'll come back and have a conversation with you.

Scott Whitney: 55:44

And what do you thinks around the corner for us Zak what's what do you want to see for yourself in the next six months a year time

Zak Martin: 55:58

To get myself into were looking at the power industry one of them.

Scott Whitney: 56:04

Yeah. And we're ideally in and around Derbyshire

Zak Martin: 56:11

Anywhere I don't mind anyway. Yeah. And what

Marie Martin: 56:14

about, I've got to pay?

Scott Whitney: 56:19

What about you, Marie, what do you want to see in the next six to 12 months?

Marie Martin: 56:24

Goodness me say, it's a tough one. And I want to see the local authorities step up. So we don't have to go to court to provide like with the backing that it deserves, in the future that he deserves. And so we can continue improving his life skills and his social skills. And this intelligence has never been in question. And ready to provide all so we can go and do more and more work experience because the more work experience, he does more exposure readers, because at the moment is just completely utterly, socially isolated. So that would be great. For more companies, and to provide opportunities, I'm looking forward to further that to be able to do the certifications that Jim has offered to, to do with him and train him, because I think they'll be fantastic. To continue with the Costain and stuff for Zak to for Zak to be well and happy. Do you know what if to continue to be happy? And to continue not to be anxious not to worry about growing up in the future? And how to be independent? Because that's always been a real worry for you hasn't it? Yeah. And and slowly but surely for for me to be able to move away and move away. So yeah, for me to move on, and use my skills to continue with the campaign and to raise awareness. I'm looking at all sorts at the minute and I'm open to open open to opportunities. I love chatting, talking, spreading awareness. I'm just not sure which way my personal situation is gonna go. But I'm to get things in place for Zak, so that he doesn't rely on me quite so heavily. So that actually I can do something for me. I doubt I'll ever go back into telecommunications, I do think the SEND arena is now my arena, and I want to be able to make a difference. And yeah, just just have a little bit of more normality, less fighting. And that's it really and just be happy. We're happy. It's life's not a dress rehearsal, we only have one, and I spent the last night it's fine. I'm sure people are the local authority think I enjoy it. If you're listening, I don't hate it. But accountability, you've got to be accountable. And I'm not going to allow you to treat that like oh, boss like this.

Scott Whitney: 59:19

So sort of, you know, you've been saying there that you want your obviously you both want to be happy. And you know, I think kind of how I look at how I look at things from outside. And whether you look at this yourself and think yeah, I'm this is me or is not. I think you're both role models. I think you're both role models to kind of go, Look, this is where we're clear on a path here to make life easier for someone else. And I think I think you should both be very, very proud of everything you do. And, and yeah, you know, I mean, that's, that's what I want to say, you know, I'm kind of in awe of, of, you know, what you guys have done, the battles you've kind of fought and come out the other side of

Marie Martin: 1:00:18

Thank you only just at times, I have to say and still occasionally your find me start crying in a car park not knowing which way to turn when I've rang the MP around the counsellors, and everybody seems powerless. Nobody seems to want to take accountability. So it's not easy. But do you know what sometimes you have to get to rock bottom to dust yourself down, and then I rebuild? And then I come back stronger than ever I'm just still awaiting my new SAR request that went in on November the fourth of last year. And they keep delaying it and delaying it. So they really don't want me to see what's in this one. And I don't know why, because I'll just go to the ICO. It's, but again, it's another battle another day show on 55 years old. I've had enough. I don't want to battle. But I'll battle for him till the day I die. And not really. And thank you for your kind words. I really appreciate it. Because sometimes it does feel like a thankless task. And don't get an awful lot back for what you do. I'm not saying a big paycheck. I just got a pension credit. So I'm probably going to have to go back to work in the next 12 months and do something, but I don't want it to be at the expense of my son or his future. So yeah, happy days. But yeah, I pull it up, please. I suppose it gives me a purpose after doing the job that I did for 20 years prior to having Zak SEND arena has given me a purpose. And yeah, given me a new zest for a new career, I think a new path.

Scott Whitney: 1:02:04

And Alastair, if you got anything, before we kind of wrap up if you've got any, any last thing you want to say or or ask Marie or Zach,

Alastair Swindlehurst: 1:02:14

I think small observation or anything to ask if I think I think from my point of view, because I've had, like I've talked about my dad in terms of sort of, he had health issues, and he had similar issues in terms of local authority and and sort of a friend grew up with muscular dystrophy and sort of probably experience of similar issues to yourself. And it's the kind of isn't for the resilience of those around that person that needs the support. It's kind of these issues would often go about unspoken. So I kind of just sort of Hats off to your fairplay and kind of I'm pleased that you've got some inroads, but I appreciate the fact kind of, there's more that you want. And hopefully you get that more as time as time marches on. And you can get some bigger wins as well.

Marie Martin: 1:03:02

Yeah, it's just the start. And I'm really pleased the way things that go in four years ago, because that was in the dark place. Now we're out and about, everybody knows this, when I walk into a London meeting and say, Hello, send warrior mum making a difference. Yes, I do read all your tweets. Yes, you do. She just tagged me in on enough of them. Well, you know, my message to Will, if he's listening to this, come on and make a difference. Because so far, we're still sat here with no support, and you've heard our story, he wants to make a difference, prove it. And then perhaps I can go to all my followers and give them a bit hope that things are going to change. And it's not just a load of rubbish. Accountability all the way please. And that start now. And if there's any businesses out there, yeah, I got 36. And I kmew nothing about disability. But it could be your child, it could be your grandchild. It could be somebody within your family that you ended up with a disability in the family. And it certainly changed my life. And I think we all need we're stronger together. We all need to make a difference together.

Scott Whitney: 1:04:13

Excellent. And, and I always like to ask people right at the end, to leave us kind of with one final thought. So, Zack, I'll start with you. What's what final message can you give to anyone listening today?

Zak Martin: 1:04:33

All I can say is keep your heads up because you don't know what's gonna happen in the future.

Scott Whitney: 1:04:40

Excellent, thank you, Marie.

Marie Martin: 1:04:45

It's a bit like it's a bit like sales the selling starts when somebody says no, you'll have a lot of nose in your life. And actually you can overcome any adversity and you only fail if you don't try. So keep trying keep the faith and make it happen.

Scott Whitney: 1:05:04

Excellent. Thank you. Thank you everyone for for coming on. Marie, Zak. Alastair is this is this a little bit different to how things go on your podcast

Alastair Swindlehurst: 1:05:18

very different so the way it's where I run these things is thats fine we are all different Scott You know, I mean, we've got we've got to respect everyone that has his first of all, I don't use cameras, because I'm quite comfortable not being filmed. So this, this this, this has been slightly unnerving to know but cameras on me for the last hour. I need to thank you. Thank you deeply for this.

Scott Whitney: 1:05:43

And I like the way that At the beginning, you said about you needed to cut and for the few minutes you kept pushing your hair back. But that's obviously something I haven't got the luxury of doing.

Alastair Swindlehurst: 1:06:00

It's thick and luscious. Give it a few weeks I won't be far away from that to be honest.

Scott Whitney: 1:06:09

So yeah, so thank you everyone for for tuning in listening. Obviously we'll be back again with another episode next Wednesday. But all that's that's left for me to do is thank thank Alastair thank Marie and thanks, Zak. So thank you. Thank you.

Marie Martin: 1:06:28

Thanks for having us. Really appreciate it.