Hello, this is Anna Kennedy, and we’re talking all things autism. Been a busy bee as always. Just to remind you, if you haven’t seen it yet, our Overseas Charity Ambassador, Danny Bowman, is on love on the spectrum.

And if you haven’t seen it, you’ve got to watch it. It’s become so popular now, and it’s the second series, and it’s on Netflix. So, Danny, she’s been one of our ambassadors overseas, ambassadors now since 2017.

I met Danny when we did Wear it for Autism, one of our first fashion shows in the centre of London. And she actually won, she was chosen from the judges, so she came all the way from America. And that’s when I first met Danny, and then I’ve met her a few more times since then, because she has a passion for animation.

And she set up her own company called Danimation. And she set up her first company when she was 11 years old, and she lives with her lovely aunt and uncle Sandra and Bellman, sorry, Sandra and Patrick. So if you get the chance, please do watch it.

It is so good. And Danny is so pretty. She’s determined.

She wants to meet someone who’s as passionate as he is, and also as a creative future. So if you get the opportunity, please do watch it. It is very, very popular.

Also, as you can remember, I have set up a neurodivergent medication survey, because many of our families, adults as included, who maybe have autism or ADHD or epilepsy, finding it difficult to get their medication. So we have two surveys going at the moment. So one for a parent carer, and one for an autistic individual or someone who has epilepsy or ADHD.

Very short questionnaires, only seven questions for the carer and 10 questions for the neurodivergent adults. We’ve had quite a few more from adults than we have from carers. I’m just going to read you some of the responses because I’ve been going through the surveys at the moment.

So what people are saying is it’s never straightforward. I hate calling up the doctors as I keep being called a hypochondriac because I couldn’t explain my symptoms. Well, yes, I couldn’t shut my brain up to sleep.

I was seeing tarantulas on the ceiling and on cephalene. What they’re also doing is that I’ve been reading is they’re making their medication last longer and taking a lower dosage, which obviously isn’t very good. Somebody’s saying once a month it was unavailable between July and November 2023.

I’d just go without, not very good. Yearly and no often both drugs are out of stock at the chemist. At least we have to go cold turkey in mistakes without any medication as there’s no suitable alternatives available.

Missing them means no sleep and increasing distress due to ED and other voices returning in my head and it really is distressing and dangerous for me. So many comments just very, very similar to that. So if you’re finding it difficult to obtain medication for your loved one or for yourself, please, if you have time, it’s very quick questionnaire.

Please do complete it. We’re going to produce the results and then take it over to a body that is interested in what the results are from our survey. So I’ll keep you updated as you always know that I do.

I’m currently working again with Annie Sands and she used to be part of another charity but now set up her own. It’s called Dawn, spelled D-A-W-N, and she does a lot of support in housing, in benefits. What Annie doesn’t know about housing and benefits, it’s just not worth knowing.

So now she had the autism passport with the previous group but now she is uploading it and also updating it, I should say, and we are going to be sponsoring it again as a charity. So it’s called My Autism Passport, all about me. Really useful that you can take to hospital appointments or a GP or if you’re going to the dentist, it just saves you explaining everything.

As you know, you have to keep explaining everything over and over again. So it’s obviously got your name, your national insurance number, date of birth, emergency contacts and telephone number, and then how can you help me. So it’s like ticking statements, so contact My Emergency Contacts, we can give you insight on how my autism affects me, be specific and concrete in what you say.

So lots of different possibilities that would work for you. So you just tick the one that is applicable to you, how you might find it difficult to communicate, characteristics of your autism, and then also there’s some tips on how to reduce your stress. So I’m taking a deep breath and lots of useful numbers.

So it’s a useful little booklet. So when the new one is up and running, I will let you know and obviously it’ll be hosted on the charity website. And just to remind you, it’s www.annakennedyonline.com. Also to remind you about Autism’s Got Talent, we still are looking for singers, dancers, musicians, magicians.

If you’re a player in a band, we want to hear about you. So closing day is the end of May. We’ve had quite a few already, not only from across the UK, but we do get them from overseas as well.

So end of May is when everything needs to be in to us, your bio and your video link. And then we will inform everybody during the summer holidays and then the show, our 13th year, will be happening in October at the Mermaid Theatre. And then the last thing I just wanted to share is about the Autism Hero Awards.

As you know, this has been going now for five years and we celebrate people that go the extra mile, whether it’s a parent or a carer or a business or might be a reporter that writes particularly well, a sibling. We want to hear about the person that you feel that goes the extra mile for the Autism community. That again closes the end of July, but we’re not going to be having the awards until the beginning of next year.

So it’ll be February or March. We’re looking for venues. As you know, venues are a lot more expensive now, so we’re trying to find somewhere that’s going to work for us as a charity.

Last thing I wanted to say about charities is that a lot of the smaller charities now are really struggling. So if you can support your local charity, please do. I’ve read of three small charities only last week that have closed due to the lack of funding.

I’m pleased to say one of them that was actually going to close that in Sunderland it was and it was a cafe that was run by autistic individuals that’s been saved. What happened was someone put out a crowdfunding and they’ve raised enough funds to keep it going for another year. So that’s fantastic news.

So as I say, if you can, please support your local charities. For me, the smaller charities are the backbone of our society. So now I have a lovely lady.

Her name is Sally Lawrence and she’s the mother of three children and she’s going to be talking to me about something very special that she’s created. So first of all, I’d like to introduce Sally Lawrence. Welcome Sally.

Thank you so much. Lovely to be here. Oh, thank you.

So before we talk about autism, before we talk about anything else, who is Sally Lawrence? Is that over to me? Yeah, away from who is who are you Sally? So where are you from? Where were you born? Well, I was born in Cheshire, but I didn’t live there very long. I then moved to Dorset. And then when I was seven, we moved to Australia.

And then I lived in Australia, New Zealand. I’ve lived in Canada. And yeah, my job, my parents traveled a lot.

And we went to lots and lots of different schools. When I was a child, I did go to university here. In fact, I did my A levels here in England, and in Sussex, in Bexhill-Oncie.

And I went to Bexhill University. I studied French and Spanish. And then I worked as well, I then went to Bristol University, did a post grad certificate in education.

So I’m a qualified teacher, but I didn’t use my teaching. I then became a tour guide. And yeah, it was great.

So I was using my languages in a practical way, which I absolutely loved. I loved, I think the travel was in my bones and my blood. So it was easy for me to just live out of a suitcase.

And I had 50 people tagging on behind me in the coach. And I was a tour guide for four years, traveled all around Europe, all, I don’t know how many countries we did, but tours of either a week or two weeks or three weeks, even four week tours. And for those people, some of them had come from Australia, America, India, Canada, all sorts of far away places.

And for them, it was a lot of them, it was the trip of their lifetime. And they really wanted to see Europe in a short time. And it was just a whirlwind.

And it was fantastic. And I just loved that for four years, I did that. And then I worked in London as a tour operator.

So I was organizing performing arts tours. And I was putting together tours that were tailor made for choirs, orchestras, marching girls, handbell ringers, all sorts of groups like that from the States coming over to here. So I would set up their concerts and their tours.

So that was great fun, too. And occasionally, I left the office and went and did the tour with them. So I took them all around.

That’s good. Oh, you might know some theatres that are reasonably priced. Well, it was all a matter of, yes, could they have a homestay to cut the cost and things like that.

Yes, trying to get into local festivals and here, there and everywhere. But that was great fun, too. And then I had my first child, Tanya, in 1990.

And I took maternity leave. And then it was either all or nothing when to go back. And so I chose to not go back because I was they said, you can’t do part-time.

So I chose not to go back. And I had Simon two years later in London. And then we moved out of London when Simon was just under a year old.

And we moved to Farnham. And 30 years later, we’re still in the same house that we moved to in 1993. Yeah.

So moved to Farnham. And it was apparent that Simon had difficulties. We didn’t know what for the first five years of his life.

It was very, very difficult. We were thrown from pillar to post with people, the consultants saying that he had developmental delay. They wouldn’t give us the word autism.

So I remember a friend of mine saying, oh, my son’s just been diagnosed as autistic. And I said, what’s that? Here I am a few years later, knowing quite a lot about autism, just because I’ve lived it for the last 31 years. And so not to forget my third child.

So in 1999, I had Juliet, who is now 24. And so, yeah, so I have two lovely daughters and Simon in the middle, who is lovely, too, but very different because he is severely autistic, nonverbal. He did have words.

He spoke about 100 words when he was aged four and lost them all by the time he was five, which is hard. He can’t say a single word now. He just makes noises.

He’s quite vocal, usually happy. Well, he can make happy and cross noises. So he communicates through sound.

So he also has epilepsy, which didn’t become apparent until he was 17. It is touching my head here for word. Well managed at the moment, which is great.

It’s always a worry. So he has drugs with him all the time. The person looking after him has to have the bum bag with the urgent medication with him.

And he has challenging behavior. He has pica. So he’ll eat nonedible substances.

He’ll take the screw out of a chair and pop it in his mouth and swallow it. He swallowed the chain of the bath chain in the days where we had chains between the chain and the plug. He swallowed 40 centimeters of bath plug.

That was quite a good one. It did come out 24 hours later, but he’ll eat soil, shampoo, medication. Yeah, he’s eating people’s medication if they haven’t been careful enough to put it somewhere safe.

He’s, yeah, so pica is another really important reason why he is on one-to-one care 24 hours a day. What’s been challenging for you? Exactly. It has been.

And I’m just so grateful that what we’re going to come on to talk about is Linden Farm where he lives now. But we worked very, very hard, obviously, to set that up. But I’m just so grateful.

We see him every week. He comes home on a Sunday. But on a Sunday evening, he goes back and I hand him over.

And, you know, I know he’s safe and happy there. And, you know, I’m just so, so appreciative of the fact that we have somewhere for him to live, which a lot of people don’t. And this is why we’re doing the campaign that we’re doing, helping others set up the likes of Linden Farm, which we’re going to talk about, because it’s wrong that people, I mean, so we couldn’t cope with Simon when he was eight.

And it did break my heart at the time he went to prior school in Berkshire on a weekly basis, but just leaving at the age of eight with no understanding of why he wasn’t coming home that night. I mean, even thinking about it, I get emotional, but it was really hard. But we couldn’t cope with him.

We just couldn’t cope with him smearing pool over the walls and ripping his mattress and ripping books and ripping my daughter’s homework and throwing her dolls and clothes out of the window. And, you know, it was it was difficult. So he needed a 24 hour curriculum and Priors Court certainly gave that and Priors Court was brilliant.

And he was there for 18 years through the school. And luckily at the age of 19, we still didn’t know where he was going to go. But Priors Court opened a young adult provision at that time.

And he was one of the lucky six who got a place in, in fact, the second year it was open. That would be opened out and he was there so he could be there till he was 25. But in the end, he was 26 before he left because Linden Farm wasn’t quite ready.

So so, you know, we are when they say 25, though, isn’t it? It’s just like because I know quite a few people now they’re worrying about all the loved ones going to be 24, 25. So what happens after that? And I do know, like I spoke to a college where they had about seven or eight students where they have dual funding. So they can either be funded through an EHCP up to 25, or they’re obviously funded through social care and health.

But what’s happening is for the people who have got the EHCP and they get to 25, they’re thinking that, oh, well, once they get to 25 social care, and they’re going to pick up the funding, but they’re not. What’s happening now is they’re just not so that they’re going home or they’re talking about parents couldn’t cope with them at the age of eight. How can they cope with them when they’re 25? A few weeks ago in a concert and they had an autistic man, he would have been their son, he would have been about 50, I imagine, 45, 50.

And then he was sitting between these elderly parents. And I just thought, it’s so sad. You know, why should he be back at home with elderly mum and dad, you know, the siblings, if there were any would have flown the nest and made lives for themselves.

And he’s stuck at home. And it’s hard on the parents, they’ve completely dedicated their life to that person. And that’s just one that I was aware of the other day, but it’s happening over and over.

Yeah, it’s getting worse now. What happens is I’ve read that they’ve got some sort of pilot study, I think it’s Bristol, that now they’re putting adults like ours into like old people’s homes, if they call that now. That’s not the right place for them.

Because they say, oh, well, they’re going into a care home. A care home? I mean, that’s home for the elderly, really. I know.

And that’s their own relationship with autism. I know. The other one I heard of, they started doing, well, I don’t think they’re doing it so much now, is for people to foster them.

Like, no, that’s not going to work either. So talk about the Simon Trust. So what is the Simon Trust? So obviously, you hadn’t heard about autism before until your son was born.

Can I just ask that? And I ask all my guests this, that when you were younger and you were at school, can you think of people that possibly you didn’t know they were autistic, but they may have been on the spectrum now thinking about it? That’s a good question. I know people who possibly are but are not diagnosed now. I can’t think of any in my school days that I knew.

Some people do, because they thought you might have been a bit eccentric. I’ll probably think of someone later, but not off the top of my head. But no, I think, I don’t know.

I had quite a sheltered life, I suppose, from that point of view. I didn’t really know people with disabilities. And yeah, autism wasn’t really talked about.

It certainly wasn’t talked about. So eventually, we realized that Simon had autism and he wasn’t going to recover from it. It’s a lifelong disability.

We had a battle, as it was saying earlier, just to even get the diagnosis. And we had to privately for that in the end. And it was like, you know, here’s your life sentence and off you go and good luck, because there wasn’t anything, they couldn’t make him better.

But then at least we knew what we were dealing with. So Simon was five at that time. And so he just started school in an MLD, a moderate learning disability school, which he had slipped through the net to get into.

He really wasn’t able enough for that school, for to be in that school. But anyway, with the diagnosis, I then heard about the LOVAS program. I don’t know if you’ve heard of it.

It’s applied behavior analysis. Yeah. Yeah.

So it’s intensive behavioral therapy program. The controversial at the minute. Sorry? Quite controversial at the minute, ABA.

Is it? Yes. Anyway, so we took him out of school and dedicated two years to teaching him on a six hour a day, seven days a week intensive behavioral therapy program. So I employed so I found the people and employed them and to run the program.

I was one of those people. And so my daughter was born in that time. So it was quite difficult having a young baby at home and trying to be one of Simon’s tutors.

Anyway, we got through it. So we did that from the age of five to seven. We were then part of the founding group of the Jigsaw School.

Simon went to for a little while. So yeah, that’s which is local to hear. It started off in Frimley and now it’s in Dunsford in Surrey.

So that is doing really well now. But he went there for a little while while we were fighting a tribunal to get him into Priors Court. We saw Priors Court and I just knew it was the right place for Simon.

I saw it. I was about six months pregnant and I had to wear a hard hat to go around it. It was still a building site.

And I just knew that that would be the place for Simon. And eventually we got in there. But again, yeah, as I said earlier, that was a real wrench to to let him go there.

But it was the right place. So yeah, so he got to 25, 26. So yeah, so at 19 we he got there and into the young adult provision.

And then we were constantly talking to Surrey County Council. In fact, we had been since he was 15 because we thought he’d have to leave Priors Court at 19. So we were saying you must provide for the likes of Simon in Surrey.

There’s just nothing appropriate for him. There’s been nothing through all the so-called honeymoon years of education. There was nothing appropriate in Surrey then.

And now there’s nothing now that he’s an adult. So you’ve got to do something about it. We were telling them.

And there were a big group of young people, Simon’s age, all from Surrey at Priors Court. So they’re all out of county, all needing to come back into county. And what was Surrey going to do about it? So I mean, I say, sorry, it’s the same county.

Well, nation over nationwide. So eventually they listened to us. They started listening to us and said they would work with us and they would offer us a plot of land to build a home for those with severe autism.

So we said, great. We looked at the land. We chose one of the sites that they offered us.

And then a county councilor pulled the plug and said, sorry, you can’t have that plot of land. We need it for something else, maybe one day. So they said, you know, Simon can go to Yorkshire, like all the others, you know, far out of sight, out of mind.

And because there are suitable places in Yorkshire. Well, why? We live in Surrey. We wanted him back in Surrey.

We wanted to be part of his life and him part of our lives. So we weren’t happy about that. And so anyway, we decided to find a plot of land ourselves.

And we did that. And that was what we found and which Linden Farm is now sitting on in Allfold, which is near Cranley, semi rural, just in a lovely little village. And it was a six acre site.

And Surrey County Council first said, we’ll lend you the money to buy it because it was on the open market and we were going to lose it. And so we were setting up the charity at that time because we realised this is what we had to do. So this was in 2015.

And they said, we’ll lend you the money, just put in a business plan. And we’ll show us how you will raise the money to pay us back. So we did that.

And they sat and looked at that for a couple of weeks. And then they rang up one day and said, well, actually, we’re not going to lend you the money to do this. We’ll do it ourselves.

So I thought wow, that means I haven’t got to raise millions and millions of pounds. At first, I thought, this is fantastic. But at that point, obviously, Surrey took over, took the building.

It became it was in their control. So there were pros and cons. But anyway, we handed over the key, as it were, to Surrey County Council.

They bought the land. They built the bricks and mortar of the houses. And we agreed to work in partnership with them.

We aimed to raise half a million pounds, 500,000 pounds, to provide the extras, the meaningful extras, the extra essentials that these young people need on site in order to live a satisfactory life, a meaningful life. You wanted it originally, or did they change the design? Well, we were allowed to go to meetings for a year and a half during that time of every month. They showed us what they were doing.

And they did listen to us like the size of the rooms. And they really listened to what we had to say. And it all had to be single story.

And yeah, they did listen a lot to our input. It wasn’t totally how we would have liked it. But to a large extent, they did listen.

And then the county councilor told us to go away and didn’t want our money. And we would stop all those meetings. And so for the last bit, Surrey County Council did actually do it on their own.

And they had to cut about a million pounds off the cost. And so it was a little frustrating to say the least during that time, but it did get built. It took a year longer and probably it cost twice the price that we would have done it for.

But anyway, it’s up and running. It opened in 2019. And Simon and nine others are now living there.

They moved in gradually. So they moved in thankfully just before COVID hit the world and lockdowns came because they had six months to sort of settle before suddenly we weren’t allowed to see them for all that time, which was difficult for everyone world over. But so Simon moved in left prize quarter in July 2019 and moved into Linden Farm then.

And so by that time, we’d raised about 300,000. We had worked for those four years, just flat out doing all sorts of fundraising, gala dinners and marathon run, well, getting people to run marathons for us and car washing and cake stalls and local choirs doing jazz concerts and having. In fact, we were the chosen charity for three schools and a golf club and a local WI.

So everyone, we were just getting our name out there and people were raising money to give it to the council. No, no, no, no, no, we were going to know because they wouldn’t provide the facilities. They would only provide the houses.

So we were ready with our money to buy the things that they need. So in fact, now for a time they said, we don’t want your facilities. These people have to go out into the community to use things, which of course is the very fact that they can’t go out easily into the community is why they needed a place there.

So in the end, the council understood that and they have let us provide a 400 meter cycle track, which is just brilliant to get out there and let off steam. And one of the young men there loves flying a kite. There are bikes that we’ve provided and a side by side trike so they can go around with the carer if they can’t ride a bike themselves.

Simon rides a bike. He does go around it a lot. So the cycle track is used a lot and we put in a sensory room, which is lovely for them to just go and calm down and watch the ball and lots of touchy feely things.

And that’s great. And a cookery room we provided so that we get a volunteer in sometimes to help them make pizzas. So we set it up with all the things that they need in a cookery room, the baking trays and so on.

And we built the worktops and the cupboards for it as well. What else have we done? We’ve built a bike shed for the storage because there wasn’t any storage there. We’ve set up an allotment with poly tunnels and all the tools and plants that go with it and a roundabout.

So one of the young ladies who lives at Linden Farm really finds it difficult to go off site. She just blocks and just can’t get into a car, but she loves parks. And when you go to a park, often there’s a sign saying for children under eight only.

So Simon is six foot five. You know, so to start off, he’s quite scary just because he’s six foot five to a six year old. So we needed a roundabout on site.

So eventually we were given permission to put one in. So there’s a lovely roundabout there and there’s a swing and we’ve put in a wooden trim trail. So that was hand carved and just gives them things to do on site.

We don’t want it to become institutional and they don’t leave Linden Farm. We want them to go into the community, but some find it easier than others. So okay.

Sorry. How far away from the town are you to Linden Farm? Linden Farm is about three miles outside of Cranley. So it is a little rural, which does have its problems for staff sometimes, but the care provider, Choice Care, they go and pick up staff from Horsham, from Guildford, from Godlaming.

So they do go around picking them up because staff are not paid enough. That’s another big bugbears that generally social care isn’t rewarded enough for the hard work that they do. And so they can’t afford to learn to drive or to have a car.

So anyway, they do pick up the staff. But the main thing is it’s got space. So for people who have severe autism like Simon and the others who are living there, it’s calm.

It’s just a lovely, lovely setting rather than a busy town. He couldn’t cope with neighbors or noise of traffic, street lights, all those things. All the people there would really, really struggle and regress with that sort of environment.

So that’s why this was so appropriate for them. So for those with the severe autism. How many people can be there? There are 10 and it’s full.

So there are five flats, individual flats. The County Council would have had all the flats, but we said actually some people like others around them. And so we have Simon in a three-bedroom house, and then there’s two-bedroom house.

So three, a house for two and five individual flats. So it’s 10 people. And then there’s another block, which is the activity center and the staff room.

So we use that for family events. The families are all quite involved. And in fact, on Saturday, there was a party.

Two of the young people had their birthdays last week. So a lot of the parents went to and we just had a nice party there for the young people. And it’s just nice to get do these things.

We’ll do something at Easter and at Christmas, we all go to go there. But all the parents are very involved. They all see their young son or daughter every weekend.

And because they can, you know, if they were up in Yorkshire, they couldn’t. And it’s so vital that that they stay part of their family. These people don’t have friends, so they need their family.

Simon gets brought home at 12 o’clock every Sunday. And he is grinning from ear to ear when he walks in the door. And that just, you know, is just so lovely to see.

He can’t tell me, gosh, I’m pleased to be home. But, you know, I can just see it in his face. He’s pleased to see us.

But likewise, he’s happy to go back in the afternoon when we take him back. So I know that he’s happy there. And that’s very, very reassuring.

How long can he stay there for? Or how long can they stay there for? Oh, hopefully forever. We’re working at it to make it adapt as they as they get older. You know, we they’ll need different things.

But that’s why we’re there as a charity to sort of buy things that they need for them as they need them, really, that they couldn’t possibly have with their with the care package that they have. So hopefully, yeah, as long as everyone remains compatible, and, you know, we’d like to think they can all stay there as long as they want to, really. And if you do it again, would you do it again? Oh, gosh, yes, there was no choice.

We had no choice. We wanted Simon back in Surrey, and we just had to do it. So we pulled all the stops out and made sure it happened.

As I say, lots of what would you do differently? Thinking about it. Well, we were upset that we had to lose a pledge we’d been given for horticulture on site, because we wanted to be able to water tomatoes all through the year. And the council said we don’t want that.

So we had to lose this massive pledge of money for for the horticulture. So anyway, we set up an allotment down the road. So, you know, it would have been nice to have horticulture on site.

But I’m very pleased how it’s worked out. Yeah, yeah. And the council has control over who provides the care.

And the council also chose who went there. You know, we made sure that Simon got a place there. But, you know, the others is up to Surrey, up to Surrey County Council, as it is with every county council who lives there.

And they do try and make sure people are compatible. Obviously, I was going to say that need to be compatible. Otherwise, it’s not going to work.

So yes, and each person has their own care plan. And the council chose the care provider. So that went out to tender.

We weren’t allowed to be involved in choosing the care provider. But they chose choice care who we were worried, oh, gosh, they’re not a specialist autism provider. But actually, they do a very good job.

Yeah, yeah, you know, carers now, because I spoke to quite a few people where they’re looking for, you know, good carers that have obviously got some autism background and knowledge. It’s getting harder and harder to try and find carers. And a lot of it’s down to as well, it’s like, you know, money that they’re paid, you know, their salaries.

It’s not enough. It’s going on in this world at the moment. And like, for example, you know, Angelo, you’re going to get seven hours respite a week, and he had a carer, but he could no longer work for him.

So the actual manager now is looking after Angelo because he just can’t get anyone. So he’s just finding it really difficult. So he wanted to set up something like Linden Farm.

Is there a template? How does it work? Well, Linden Farm is the template. So if people want to set something up like Linden Farm, which many, many people do, we have over 300 parents who have contacted us since last summer, because the BBC interviewed me or the website, and it just went nationwide. And suddenly, just before my daughter’s wedding, so it was quite busy, busy here.

Anyway, we were just getting all these emails saying, can you set something up for us? Can you tell us how to do it? Or can you help us? And we just thought, we can’t ignore this. And so we had all these people writing in and really heartbreaking stories of people who just need something like Linden Farm. So like placements are breaking down.

Parents are just not coping. People being sectioned because they’re not in appropriate care. The wrong support and the wrong placement just causes people to regress.

And in the right support, in the right place, they thrive. And all these stories, and I think the worst one that came out that hit me was someone in a secure hospital. They saw him, and he’d taken all his clothes off, and they saw that he looked like he’d been whipped.

But in fact, it was just self-harm. He had nothing else to do other than rip himself to bits. So awful, awful.

And why should anyone be kept in basically like a secure unit, a box? It’s just not humane. It’s just terrible. And so Linden Farms allow people to be themselves and have the right care to develop as people should be.

I mean, you wouldn’t keep an animal in the way some of these secure units are kept. And I just think it’s so wrong. So how do people do it? Contact us through our website, which is www.thesimontrust.org. There’s a Contact Us page.

So our charity is three words. It’s The Simon Trust. People often forget the The Simon Trust.org. And we have put people in groups of counties.

So there are 27 different counties with people who are now in little groups that we’ve set them up to get to know each to talk to each other and see if they can be stronger united and go to their social services and say, we would like something like Linden Farm for our son or daughter. And there’s nothing here. And you’ve got to provide something.

And inevitably, the council will say, we’ve got no money, which is what Surrey County Council said to us. But now people have to be a bit more clever and find a developer, a builder who is trying to get planning permission because building has to go on. And these counties have a quota that they have to fulfill of houses that they need to build.

So the way it works is if they want to build 100 houses, they usually part of the planning permission says that they must provide something for the community and then they’ll get planning commission. So it really helps the developer to know what to suggest. Our county and the guy we were talking to recently said, well, actually, we had one of these developers who provided a school, but we didn’t really need a school.

And you think, you know, we’ve got to be one step ahead and tell them a care home is needed or a supportive living home is needed. Can you please provide one? So in able to build 100 homes or more, they say, OK, sure, we’d be pleased to provide or they either gift the land or they gift the whole thing that they they build it as well. And then they gift it to their council at the end because the developer doesn’t want to run it.

And often the council doesn’t want to. Well, the council is either the landlord or they get a housing association involved and they obviously put a care provider in so that they don’t run it themselves. But that’s how it works.

It’s Section 106 of the planning permission planning application that says that they must provide something for the community and then they might get planning permission. And so that is happening in a couple of counties, definitely. And we hope it will happen in maybe in Surrey again and, you know, and another counties because they’ve got to look forward.

They’ve got to look long term. So for us, the the five essentials that we would recommend people try to replicate from Linden Farm. And again, this is for people with severe autism, not the people who can cope with getting on a bus and can cope with neighbors and so on.

This is for people who really need that special care, really. So for Simon and the others who now live there, number one was space. As I said, this is a six acre site and that space was really, really important for them.

So they’ve got space. It’s semi-rural. There are neighbors and the lovely little community, but it is semi-rural.

So it’s not too noisy and busy for them. Back in county, back, find something close to their families because family is so important to these young people and vice versa. You know, they’ve got to be near their families and then they’ve got to have onsite facilities and it’s got to be a safe stimulating environment.

So those are five key factors that we think are really, really important for the likes of Simon. Those with severe autism. So yeah, you know, and we’re happy to talk to people, but we’ve put them into their groups.

We’ve got two WhatsApp group. Well, we’ve got one WhatsApp group for everyone. So people talk about the more general things on that one for the people.

It’s called a Linden farm in your county. You know, we get comments like, oh, you know, my we’re having to sell our home to fund the care of our autistic son and things like that. And you think that’s so wrong.

But so so we’ve got the WhatsApp group where people chat to everyone and then separate to that we’ve set WhatsApp or they set WhatsApp groups for each county so that they can get cracking together and do that within their own county. Okay. So would the family say, for example, you know, you were looking for money for the facilities, would families have to hook funds forwards of their own or how does that sort of side of it work for it to get off the ground and to the council? The council paid for Linden farm for the for the the whole, you know, they set it all up while we were busy raising money for our charity, which we have then plowed back into Linden farm.

We spent about 200,000 on Linden farm from our what we’ve raised, the money that we raised for them. So what happens on Linden farm? Do you have any say at all? Well, they listen to us. I mean, as far as the facilities are concerned, yes, now the council realizes that actually, we’ve been quite helpful.

And, you know, we’ve given them 200,000 worth of facilities. So they do listen to us. And the other day, we invited the head of Surrey properties to say to come on to site and to say, could we put a pergola up because there’s no shade there in the sun.

And so he agreed to that. And in fact, no, we’ve just got planning permission for that. But we’re talking about setting up a music arts and crafts center there as well.

So they’ve got an extra room for that sort of thing. And yeah, they they they’re quite welcoming now to what we propose. So who finds the piece of land? Is that down to the parents or is it down to the council again? I mean, it’s going to depend in each county, but we found it and, and, you know, sorry, paid for it on it.

I did the negotiating because I thought we were buying it. So I did set up the homes. But but we’ve worked with them and provided the facilities because those people need the facilities.

They can’t just live in a in a house, in a box. They need all those things. So so yeah, I mean, you can go to trust funds.

We’ve got a lot of money from trust funds. And they have money that they have to give away each year. So there’s a great big book of fundraising or fund giving trust funds.

And one can plan one’s way through that to find appropriate trusts to apply to for bigger grants. But the councils do have land, you know, they do. So obviously, when we first set up a school many years ago, they have you just asked them to say, what have you got available? And then sometimes they’ll share that information with you.

And the other thing I’ll say, so if you’re a part of this WhatsApp group, and you’re trying to set up a home because obviously got a loved one, say, for example, like myself with Angelo, because obviously, he’s 31 now, and I’m 64 soon. And I’m thinking I’m not going to be able to do what I’m doing with him at the minute, you know, for the rest of my life. So obviously, I’m thinking ahead now.

If they part this WhatsApp group, and the local authority get involved, who chooses which individual goes into the home? So what if you start because what I’m thinking is, for example, okay, I’m going to be part this WhatsApp group, and I’m thinking I’m going to get a place for Angelo. What if the local authority after you’ve done all of this, don’t choose your son or daughter to go into the home that’s been set up? How does that work? I know that was a massive worry for us. So we did get a letter quite early on to say that that Simon would get a place there.

But but no one else got such a letter. And it’s a worry. But in the end, all the people who were coming from priors court in the sort of the peer group of Simon did get a place.

We didn’t have a say as because then that left about three places. Yeah, seven of them of price court and it left three places. So we had no say in who filled those other places.

And I think they look at who’s the most needy and who’s costing them most at the moment, because if they’re out of county, it’s often a really, really expensive placement, that placement that might come to an end. And so they think, yes, we’ll put that person in there. So it’s a matter of really, really being persistent and saying I’ve got to have a place for my son or daughter there.

So if you went through all that process, you’d be hard. That’s a massive, massive worry. But you just I mean, people with an autistic son or daughter, I think from experience, have all had battles all the way through from the beginning.

And we’ve learned to, to just keep on and be persistent when something is needed. But, you know, since I say some of these desperate stories, I just feel so sorry for them. And but the councils have to listen.

They just have to listen. And, you know, it’s financially makes sense for them to be back in county. Politically, it does.

Morally, socially. I mean, it’s just for every reason they should be back in county. You know, some people, okay, they choose somewhere that’s a long way away.

And that’s, you know, if it works, it works, which is fantastic. But it just worries me. You know, I wouldn’t want Simon to be a long way away because you need to be just checking up and just being involved and just checking that things are all right.

And so you hear some horror stories, don’t you? But the council benefits from having them back in county because particularly in a supported living context rather than a care home, a residential care home, because if it’s supported living, then all the young people living there have a tenancy. They are tenants. Yeah, they pay rent from their housing benefit.

And so they’re paying rent back to Surrey County Council. And that’s coming from central government. So the council is getting an income, whereas if they were out of county in a residential care package, it’s a whole massive pot of money that they’re just funding and not getting anything back.

So it’s in their best interests to have their severely disabled people back in county because year over year, they do get housing benefit and rent paid. So it does make sense. And as people get older, as you say, we’re all getting older and we can’t be around forever and looking after them forever.

So it’s really important that something is set up. Yeah. So how do you think it would take to set up and obviously going to be different depending on where you live, but how long roughly do you think it would take to set up something? Well, it took us four years from 2015 to 2019.

It needn’t have taken quite that long. I think there were some unfortunate delays there. I would suggest, however old someone’s son or daughter is, that they start as soon as possible.

The other day we had someone whose daughter was eight, I think, and severely autistic and they said, we want to start thinking about her future. It’s never too early and start as soon as possible. But if they find a developer or builder who is ready to put in planning permission to build lots of homes and is willing to work with the parents, it could be done in one or two years.

So realistically, as I say, it took us four, but it’s a bit like how long is a piece of string because you’ve got to find the right people who want, you’ve got to have a plot of land and you’ve got to have the developer, the builder wanting, and there are lots of them. It’s just a matter of really putting feelers out and finding these people. And it’s a win-win because they need someone, they need to put these homes up because if they don’t, they don’t get the planning permission for their hundred houses.

So, you know, it works both ways. But yeah, I mean, we started when Simon was 15 and in the end, we didn’t need the place at 19 because he was able to stay at Priors Court. But those four years were, well, and then we started again when we knew where he was till he was going to be 25, 26.

And yeah, we set the charity. What does your son like to do? What’s his favourite thing? Um, he loves jumping. He’s six foot five and he jumps like Tigger.

So we have to remind, don’t hit your head on the ceiling when it’s a low ceiling. Yeah, so he likes jumping. He does go swimming each week.

It’s a real success story of the allotment that we set up near Linden Farm. Um, when he first went there, he absolutely didn’t want to be there. And it took two of the carers to sort of stand at the gate to stop him running away.

But now he goes there once for an hour a week, just once a week. And we get some pictures and it just is so heartwarming. He is digging.

He loves the wheelbarrow. So he pushes the wheelbarrow. There’s always something to move around from one place to another.

And so he’s wheelbarrowing, digging, watering. It’s a long way down for him to do any weeding because he’s six foot five. So, you know, he’s not that keen on weeding or planting seeds even.

But he’s really benefited so much from this allotment. And yeah, we just get sent these wonderful pictures. And he’s actually grinning while he’s digging with a great big spade.

So it’s just lovely. And what else does he do? He used to like rock climbing but he went off that. He goes to a farm and feeds the pigs and the sheep now once a week, which he likes.

And again, that’s a really peaceful place to go to cycling. He likes cycling around the track. He goes on a train ride once a week.

Yeah, he likes going on a train and he goes to trampolining once a week. So he has, you know, I’ve set up all the activities that he does. Yeah.

And, you know, the care providers follow the activity planner really. He likes bashing percussion instruments. And in fact, he goes, we’ve worked out a partnership with a local school and he and one other go once a week to the school and they have a sort of buddy there and they just go and bang instruments or do arts across or something, which is really nice.

It works both ways again, because the young people in the school haven’t come across people like Simon before. And you know, so it’s a real eye opener for them as well. So, you know, it’s really good that they are out, that people are more exposed to.

How do we get on with his siblings? So my two daughters are brilliant with him, brilliant with him. And he loves seeing them. He doesn’t, my elder daughter just got married and is living in London and my younger daughter is hoping to move to London.

So they’re both really, really good with him. And yeah, he loves seeing them. But it’s difficult to, you know, he can’t communicate.

Well, he uses pecs to communicate, but, you know, he doesn’t have any verbal language. But yeah, they’re great with him. And yeah, he’s very much part of our family.

And we love, you know, having all five of us together. But it’s, you know, it is challenging. He comes home for Christmas for a couple of nights.

And that is challenging. So again, I’m just so grateful that Linden Farm exists. And yeah, because he doesn’t sleep much at night.

And so when he’s home, I don’t see much either. So yeah. So do parents name deputies here? We have Deputieship.

Is that what you said? Yes. And do parents need it? Yes, they definitely do. Definitely do.

So we haven’t done that before. Can you just talk a little bit about how? There are two types of Deputieship. There’s health and welfare.

And there is property and finance. One is easier to get than the other. Which way round is it? I think it’s the property that’s easier to get.

Is that right? Have you got it? I can’t remember. I think it is. But we’ve got them both.

And it’s really, really important because you then can speak on your son or daughter’s behalf. And it’s really important. We made the mistake the first time we applied for the health and welfare of saying we wanted joint Deputieship, my husband and me.

But what we really should have put was joint and several. Because actually, no, sorry, it was for the property and finance one. Because with joint, you both have to make every single decision together.

So you can’t go to a hole in the wall and get money out because that’s only one of you doing it if it was, you know, on Simon’s account. So you can’t manage his, you just can’t do it these days with joint. So it has to be joint and several.

So one person really can manage it. But the other person is involved as well. So joint and several, that would be my big tip.

But Jess, we did it ourselves. We didn’t use the solicitor. It took about six months to get them both.

It is quite a lot of paperwork. But I’d certainly recommend if people haven’t got Deputieship yet to get cracking with that. Okay.

So are there any tips and advice that you can share with parents? We’ve got a couple of minutes. Actually, no, let’s go back to because we’re a program about mental health, wellbeing, looking after ourselves. What do you do to look after yourself? I run.

I run. I love running. And I run.

Well, not a lot. I used to run marathons. But now I do park runs, which is a nine o’clock on a Saturday morning.

And I’d recommend that to anyone to de-stress. Find your local park run. It’s free and it’s five kilometres.

And it’s just a brilliant start to the weekend. So I’ve done 320 of them. And yeah, every Saturday, I’ll be there at a park run.

So that is, I really love doing that. And it’s only 5k, which is just over three miles. So I do that and, and I do a bit of yoga, probably not enough, because it’s really good de-stressing to do yoga.

I want my dog. So I try to do a bit of exercise each day. But I go to bed far too late.

I know that. And there’s always stuff to do on my emails and so on. But yeah, certainly the best way I would recommend trying to de-stress is get outdoors and walk all around.

Yeah, yeah. So this project’s going to go on for that you’re doing, because obviously there’s a lot of parents out there that will want advice from you about how you did it with Linden Farm. So how long do you think you’ll keep going with this to try and hopefully help as many parents as you possibly can? Oh, we’re committed, you know, we want to keep going, because we just think it’s so important that, that everyone has a suitable place to live.

If they’re severely autistic, they need a home like Linden Farm. And they can’t be back with mum and dad forever more. And it’s not healthy.

It’s just not right for the family. The others, oh, we stopped. And that’s fine.

Keep on that tired of noise. You know, the others leave the nest. And why should people with severe autism be stuck at home? So we’re very, very, very keen to help people in the small way that we can, but just give advice.

And, you know, obviously it’s down to them. But, you know, councils have to listen. And I think your petition was brilliant that you took to number 10 Downing Street.

Who will look after our children when we’re no longer around? And, you know, that’s such an important question. So the councils have to take ownership of this. And, you know, we’re all in it together to help others to… To chase up letter, actually, for that, to the Prime Minister asking, where’s my response? Good, good.

I always follow things through. So, you know, because I always think you don’t try, you’ll never know. Yeah, well, I signed your petition along with 16,000, 16,000 or more people.

17,000 now. So, yeah, we’ve actually come to nearly the end now. It’s just flown by the hour.

As I always say to people, once you start chatting, it just flies by so quickly. So I think it’s amazing what you’ve done. And I’m really looking forward to coming to England and farming March because we’ve booked a day to come and have a look.

So I’m excited about that. So I just want to say thank you so much and keep going, keep doing what you’re doing and the best of luck to you and your family. Thank you so much, Anna.

It was a real pleasure. I really enjoyed talking to you and really look forward to meeting you in the near future. Me too.

So good luck, everyone. Keep going, as I always say, some days good, some days not so good, one day at a time. And again, keep checking the charity website, www.annakennedyonline.com. Bye now, take care.