Category Archives: Featured

Planning A Future Without You

Podcast Episode 75 If not now when? Planning for the future can be scary for anyone but it’s especially hard when that planning is for a young person who we know will face any number of challenges as they navigate towards their ideal life.

In this episode Carol Wakeford from Heartventure shares her story about how she and husband have planned and then worked towards providing an independent future for their son. Carol talks about the original idea she had of starting a dating agency and why that original model didn’t work and how it has now transformed into a different model which provides not only a social life for her son and his friends but also helps to break down barriers and build wider understanding in the local community.

Carol also talks about independent living in terms of how to create a supported living house for young people. She discusses the practical challenges of making it work and how to find the right people to work with.

Planning for a future, we won’t always be a part of, isn’t ever going to be easy. Planning though can not only provide our young people with the security of realistic options it can provide us with peace of mind and help us stop asking what happens when I’m no longer around.

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Podcast Transcript
DEBRA: Welcome to Episode 75 of the Journey Skills podcast. This episode is all about planning for the future, it’s also about thinking about the future where you won’t always be around to help with that planning. I spent quite a lot of time thinking about the messages in this episode and honestly keep coming back to something that I think most parents of a young person who has additional needs think about quite a lot. It’s a really important question. It’s very, very, very scary and it needs to be dealt with sooner rather later, and that’s the question of what happens when I’m not around. And like many families, we have an extended family, my daughter has a sibling, and I know that they would always be there to make sure she was okay but should I have to do this? And more importantly, would she want them to do it?

And I think the answer is no. She wants her independence. So I see my job, in part, is to help her build the life that she wants. And of course, it’s partly selfish because once the question of what happens when I’m not around is answered, and I can enjoy some time watching her live the life that she deserves.

So I’m talking to Carol Wakeford about how she and her husband have gotten their son, Daniel to living a much more independent life and one that he can sustain when they’re not around. We talk about relationships and we also talk about housing. Relationships because you’ll hear Carol started a dating agency called HeartVenture and should explain why the original idea around the dating agency didn’t work and how it is moved into something different and something that works really, really well. And she also talks about supported housing and how Daniel now shares a house with friends, how that works, some of the challenges of getting it up and running. And I think she does a very good job of reminding us that so much is possible. But it isn’t easy but I think we’re all up for the challenge anyway.

So it’s all about future planning and helping our young people move away from us because like it or not, they need to. It’s the right thing for them and it’s the right thing for us. Scary? Absolutely! But the right thing to do.

DEBRA: Today I am talking to Carol Wakeford from HeartVenture. Welcome, Carol!

Carol: Hi.

DEBRA: Can you tell me a little bit about yourself first of all and then all about Heart Venture?

CAROL: Yeah. Well, I’m Carol Wakeford as you say and I’m married to the wonderful Barry Wakeford and we have a wonderful son called Daniel Wakeford. And Daniel who’s been autistic all his life obviously. We realised at about the age of.. I think it was round about 18 months really and took a long, long time to get a diagnosis. Then he got the diagnosis and fought where we can go from here. We did all the school years and that’s really great because school there, they’re all in compensin, they take over social life for them. Everything works around school and then basically they leave school and everything comes to a bit hefty halt.

So, we kind of “Okay”, looked at each other and thought, “What can we do?” So, we tried a couple of places to Daniel, residential places because I firmly believe that all children should grow up and move on. They need their lives and we need our lives and we tried a couple of places; one was very good but only for a short term and then we tried a smaller supported house which we thought would be ideal but actually we soon realised it wasn’t. So, we got talking to people that we’d work with throughout the years and we all felt we could do a better job. So, we thought, “Okay, let’s do it!” So we put together our own supported living house 7 years ago for Daniel and we built it up now to.. there are 5 of them now living there and now Daniel and Lily will be getting married next year so there will be 6 of them. And we just built an extension on to accommodate that.

But it was whilst we were doing that, that we’re also talking to people and realised that there wasn’t enough around them being able to socialise and form relationships, help people to form relationships. So my friend and I got together and we’ve thought, “Wouldn’t it be good if we could do a dating agency originally with our idea, our plan for adults with learning disabilities. So we’ve set up HeartVenture but unfortunately, within I say a year to 18 months, we realised that it was not going to work because we had over a hundred male members on our books and only 3 females. So we tried everything; we went rounded presentations at various organisations but unfortunately, we just couldn’t get any more females to subscribe. So we had to end that side of our organisation and we realised that while this was going on, the events which we were only going to do every so often, were very, very popular. So we got them then organised to once a month minimum and actually through the events, we’ve had several couples pair up.

So, we just decided we’re wasting all our time and efforts and resources into something that’s not going to work. So let’s do something that does work and so that’s what we do now. We run HeartVenture. Every month, we do disco karaoke night at the local pub and that’s really come on. It kind of worked organically. In the first place, we had the events room for the disco and people will come along. We did that for about 6 months (I think we were with that) and then Wednesday, they had one night, a karaoke going on in the next bar. And one by one, our guys could this and they started gradually going into the next bar and joining in. And it was a fabulous night. And the landlord ran me a few days and said “All the locals can’t stop talking. They loved that night and could they bring some guys along to the next karaoke night which we did. And then, he got back to me and said, “Look, it’s such a success, what about if we do once a month on a Tuesday, we have the disco in the events room and they have the karaoke in the main bar and we open all the doors and everybody can just wander around freely.”

And it’s been a huge success. So we’re very proud because it isn’t just about a night for adults with learning disabilities, everyone comes along; the locals, everyone, and it’s just about breaking down those barriers. And the thing that brought it home to me was PJ that was doing the karaoke at the time said that when he was first asked to step in and do the karaoke because he was there the first night, and was asked to do it the second time, he was dreading it. He was trying to think of ways to back out and he did it and he said he had the best night in his life. Thought I was gonna come along, there were people rocking and screaming and really weird behaviour and he said, “They were the nicest people I’ve ever met.” And that is just is all, doesn’t it? And now, as I say, it’s a regular event. PJ’s there, most mums, and we all know each other and it’s the busiest any pub would be I think on a rainy January Tuesday night.

DEBRA: You think it’s as simple as that then? That sort of simple thing; just breaking down the barriers. Suddenly people change their perception.

CAROL: I think it is and I think you can organise it as much as you like but it doesn’t kind of work that way because then you only get the people participate that really understand that in the first place. It has to be gradually, gradually get those people in which is how do you do that? I don’t know how. I never plan that. It happens. We’re always thinking how can we do that again? I don’t know! I haven’t got the answer.

DEBRA: Yeah, it’s interesting what you said about the dating agency because as a parent of a young woman, I can understand why there are probably more guys but was that the reason? Was that because parents of girls feel that they’re a little bit less likely to say to the girl, “Go out and date”?

CAROL: Mothers and fathers of sons are pushing them and bringing them along and say, “Please, find my son a girlfriend.” The parents of the daughters, they just put barriers up and say, “Oh no, they wouldn’t like that”. And I said, “You ask them.” “Oh, no, no, I know they wouldn’t.” And you know, with the right support and the right help, we’re so lucky, with Lily, Daniel’s fiance because her parents are so like-minded. And they just wanted her to find someone that she could share her life with. And they have and they’re so happy. And we just want other people to say, “Why can’t that be our daughter?”

I understand it’s scary but in the first place, we’re offering chaperone dates so that they wouldn’t be alone. We were offering all kinds of advice such as don’t swap phone numbers. There was a lot of safety measures put in place but they just can’t get past the fact that their young person is vulnerable (which we agree), there’s just that big fear. So, they don’t let them do it.

DEBRA: Which then stops them becoming independent and in a long term impact on the parents because … one of their great fears, or at least mine is, is what happens when I’m not around.

CAROL: That is the one. And I haven’t had a lot of people and I’ve upset a lot of people, I know I have. We’re having lovely chats and then they said “We are keeping ourself at home. We couldn’t bear to let them go. You know, we love them so much”. And then I’d say, “That’s great! But what’s gonna happen when you die or you physically cannot involve them anymore?” And they just… they has to be something there, they want it. I say, “Sort it now while you can.” When we first started HeartVenture, we were interviewing members for the organisations which have gone to the database, there was a young lady come to us. She was adequacy young lady, she was about 52 at that time, but her parents died suddenly when she was 44, I think it was, and she was put in an old people’s home. She stayed there for about 4 years and basically now, you talk to her and it’s like talking to an old person because authorities did not have anywhere for her at the time and they just found that the only option they had and so that’s where she ended up.

So, sort it now, sort it out while they’re young. And yes, it might not work the first time that you try. We are the same we try two. We have to risk a little bit to voice with the other. None of us skip the first job we take. It is very unlikely to be the first job for the rest of our life but you have to be open to risks, you know. And if you’re there to support them, then you can help them through that but they won’t be if it’s done with emergency and you can’t look after them anymore.

DEBRA: Did you start with friends then getting this together when you were doing the karaoke? How did that work? The actual getting the social activity going, you said it was accidental that it all worked so well?

CAROL: A lot of it was though about achieving things so they would be different courses going on, different activities whether they could do sports. It was about achievement but there was nothing about just going out and having a good time, you know, letting your hair down and chilling like the rest of us do. We go down to the pub, we meet our friends, we have a drink. There was nothing about that. And the nearest it came to was a few things that we went to and they were always invariably like jungle and there will be a table set up in the corner, with a few cans of coke. These are adults! They want a beer! You know, they want to go in and we noticed that it reflected in a way they were, they weren’t overdressing up, they would just go along in what they’re wearing all day; jeans, t-shirts. Yeah, that’s fine, but that’s the attitude.

And then, we’ve decided why shouldn’t it ever be a glam? Why shouldn’t they do what you and I do? So we thought, why shouldn’t they have what we have? You know, go down to the local pub. Why can’t it be a mainstream venue? Our criteria, we don’t go anywhere unless it has a bar. If it hasn’t got a bar, we’re not there. And they don’t all drink. And so we opened up, we launched it all. We did a big gala night and we did James Bond themed ball. Everyone got into spirit and we had the best night ever.

We had our resident DJ who is autistic. We also got several bands together made up of all the various guys that we know that full bands and groups, done with some dance and singing and some mainstream. You know, other people that don’t have learning disabilities joined in as well, did some singing. And we had an amazing night. And then we went forward, and we spoke to various places that had events rooms attached to pubs or whatever. And said to them, talked them into, “Let’s have it for free” and that’s basically what we did!

It’s a win-win situation for everyone because on a Tuesday night as I say, it’s absolutely burst in at the scenes, whereas you go any other pub, you know. So you could talk to your local landlord and say, “Look we would be bringing all these people, they’re gonna be eating and drinking, give us the place free and you’d be surprised what they do.”

DEBRA: Can we talk a little bit about the shared housing then? You said that you got to a stage where you didn’t want your son to live at home with you. Obviously in a fortunate position that you could do that but how did you do it and what were some of the biggest challenges for you in getting that up and running? And what’s the challenges even today with the guys living together? And what kind of sport do they get? That sort of thing.

CAROL: So, basically we wanted them to live as independently as possible and we’re about supporting them to live their lives. We tried previous to doing this and there were so many loops and hurdles come up that we actually gave in. And then, over a period of time, I kept talking to people, different support, companies. We spoke to the local social services and bit by bit, we got more and more information together. And then, I spoke to support workers that had been working with Daniel over the years that we built up quite a good rapport with. And talking to them, and we said, “You know, if we could only do our own.” So we kind of said, “Look, if we put the house together, would you come in with us?”. And they said, “Absolutely!” We put the finance in and they gave us their knowledge and skills and we just worked together and it’s a case of work on a lot of reports with social services team. They made us go away and put loads of policies and procedures together. They give plenty of things as we spoke. But we did it! It took months but we did it.

And Barry and I went out and found a house. Mortgage ourselves up to the eyeballs did it on a buy-to-let mortgage. And we converted the house so that it was 5 bedrooms with 5 bathrooms. My thing is, they’re adults, they need their own bathrooms. So, that’s what we did! And we found the perfect house, it’s opposite a bus stop to get them into town in 20 minutes and that’s what we did! When we started off, we only had 3 tenants in the first place, Daniel being one and then his 2 friends and then we had another young man come along and then Daniel’s best friend came along, and now, Lily. But that’s it, now went full to fasten.

Brighton and Hove are so pleased of what we’ve done that they actually asked us if we would consider opening another house. And I said, “We’d love to but can they provide the house because we can’t afford anymore.” There lies the problem. But having said that we do know of people that have done this that haven’t got property and had privately rented and that’s been quite successful as well. So you don’t have to be in the position to be able to buy a house, you can go out and find a landlord that will be happy to do this. And if explained properly to landlords, if they’re looking for long-term tenants, it’s perfect!

DEBRA: What kind of support do you provide? You said it’s a supported house, what kind of support do they get?

CAROL: We have 6 people here now and we have 9 staff and so it’s 24 hrs a day support. There is always someone sleep-in, a member staff sleeps in but it’s a sleep-in staff. Our guys are quite able at night. So, we’re just here in the case of emergency or oversee prompting to take meds at night. We don’t do personal care but lots of prompting. It’s a bit like you do when your kids are going up. You know, “Have you got your phone on you? Is your phone charged? Have you got your wallet on you? Bus pass?” So which constantly— it’s a military position. Organisation. Sometimes we have to… one member start to be out with someone and another member staff meets them with another person and they’re going from somewhere and that one goes back to meet someone else. We’re in contact the whole time with each other. All these, our service users have all the members and staff phone numbers. We support them with their cooking. We support them with their shopping. Every day to day thing really— clothes buying, toiletries, their room cleaned. If you just said to them “Go and clean your room”. He would be 2 minutes cleaning it and the rest of the time with his computer because he is easily distracted. And then there’s a good side where we go on holidays with them.

DEBRA: But assuming though that there’s a cost to all this. [Absolutely!] With Classly that would be a big challenge for anybody trying to do it.

CAROL: Well, you see you got to remember, I’ve always said to people, “Think 3 parts”. So there’s the rent (which gets paid by the local council, it’s housing benefit), then they have their benefits in their own right (their ASA, their PEPS). So that, they pay all their own household bills with that. So that’s another thing we support them with. We put all the bills together every month. We pay them and then we a portion as usual like the electric that’s just a straight for divide between 5,6 people, and food, they all said they’d like to do it that way. And then there will be some other things that we might get fair tickets. So that all get a portion to whoever has that extent.

So every month, they pay their share of the household bills. So that all comes out of their benefits and then you’ve got the support staff. We’re contracted to Brighton and Hove. We have divide contract with them. And we negotiate their support. So there’d be a set amount of hours plus we negotiate how many one-to-one individual do they need and the social services pay that. Parents don’t need to pay anything. These people, they are their adults in their own right. And because there’s 5 and there will be 6 soon, you know, they can afford to do it and they can afford to save and go on holiday.

DEBRA: Do you think that’s the right thing that people don’t see. I mean these are obviously only parts of UK but generally, do you think there’s a perception that it won’t be affordable because they need support, they won’t be able to afford it?

CAROL: Yes. Long issue can get that funding from the social services and they agree to funding to have max where you have to fight. That’s the biggest fight. Because the ASA and the PEPS, you have to go sometimes for medicals and whatever but normally, that’s not a problem, so they get that anyway whether they’re living here or living at home. That’s the big cracks, it’s getting the funding to support them within the house. And that’s where it always is a lot of negotiation has to go on the social services as to… they will assess them as to what they believe that they need support whilst you assess them to what the reality is. That is the tough bit to get. Sometimes, people are lucky. The social services accepts that they need help and sometimes they’re not . Social services obviously everywhere strapped for cash now. Funding’s been squizzed and squizzed and I don’t envy them because it must be a really hard task deciding who gets funding and who doesn’t. But obviously, all the time parents all say, “Oh okay, they can stay at home. That’s what’s gonna happen because it’s the cheapest option.” But you know, at the end of the day, sometimes, we have to say “I’m making my young one homeless”.

DEBRA: I mean, I don’t want to put words in your mouth but it seems to me what you’re really saying is that when it comes to something like socialising, when it comes to something like housing, sometimes as parents, we just need to do it.

CAROL: Yeah, no one else is gonna do it for you. That is it. And you have to do it. You’ve got to think of the greater good. And I can’t tell you the difference it makes. And other parents that I speak to, “Once they’re in a place and they’re happy, you see them having such a great social life.” I can tell the difference when we do HeartVenture between the ones that live at home with their parents and the ones that live in supported living residents. And I’m sorry if this upsets people but the ones live at home stay next to their parents and the ones like our guys are out there. They’re having a good time, they’re socialising, they’ve got all the skills. And that is the difference. There are some that live at home and they have been able to find the balance but I think it works more if they’re more independent. If they need someone to accompany them wherever they go, it can’t be sustainable forever at all. You haven’t got the energy yourself and they need to get out and socialise with people their own age.

DEBRA: Carol, thank you so much for your time.

CAROL: Thank you.

DEBRA: Key takeaway? Well to borrow it from popular saying If not now, when? Even small things matter. Putting in our young people’s minds that they’ll be moving out one day, it may not be soon but it will happen.

Resources
HeartVenture
HeartVenture Facebook

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Managing Mental Health

Podcast Episode 74 We all appreciate the importance of good mental health but sometimes lack the toolbox and even the support to consistently achieve it. This is often the case for young people, particularly those with an additional need. In this episode we are talking with Kimmy Obo from Kooth a UK based organisation offering an innovative way of delivering support when and where young people want it.

Kimmy explains what Kooth offers and how it supports young people particularly at those times where they are not sure who to reach out to. Kimmy also discusses healthy coping strategies that young people can use to manage their mental health and activities that contribute to positive feelings of well-being.

Kooth is an innovative service taking advantage of the benefits that technology can bring to all of us when used in the right ways. But even with the use of technology it is all still about people reaching out and supporting each other reminding each other as Kimmy does that we all have good and bad days and we all need to work on our own positive mental health.

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Podcast Transcript
DEBRA: Welcome to Episode 74 of the Journey Skills podcast. This week we’re talking about mental health and innovative way of enabling young people to manage their mental well-being, get the support when they need it, learn from other young people, and do it all in a non-invasive way.

I’m talking to Kimmy Obongonyinge from Kooth which is a UK only based organisation. So I imagine some of you are now thinking “Well, that’s not much used to me” but bear with me, although maybe you’re not surprised because if you’re a regular listener, you’ll know that we pretty much go around the world. Maybe you’ll even be like me and have the same thoughts that I often have after listening to a few episodes all from the same part of the world and thinking “Right, we need to move there.” There was certainly a moment for me a while back when New York was top of my wish list but I hope that’s what’s unique about the podcast and that we’re sharing so many stories and solutions from all around the world and not everything will apply to everyone, not every story will resonate with you, not every solution will work for you. But even if they don’t, they inform you and I think in every single case they inspire you. It’s all about learning from each other and realising the possibilities out there. And it also gives me hope that somewhere young people are getting the support that they need to live as independently as I want to.

So it’s really about sharing and there are so many people and organisations doing the work needed but all too often we’re unaware of them. Of course, they can always be more options and I know there is a long way to go until we get all the changes we want but it isn’t quite the days I’d imagined when I started up this podcast. So please become a collaborator and if you have an idea, don’t start it without looking around to see if there’s someone gone before you, that someone that you can learn from.

This conversation with Kimmy, she offers some practical tips about how to help our young people manage their mental health, also I think there’s some wider issues that play here, it’s about looking at how technology can aid our young people and make independence a probability, not just a possibility. Many of us, myself included, have a very much love-hate relationship with technology. It does all for our young people better options for independence. My own daughter’s independence is been really aided by being able to use things like contactless payments and accessing online train timetables but then, of course, there is a dreaded social media minefield that presents its own challenges as well.

But in this interview, we see how technology can be utilised into something that could connect people in a positive way. Another thing I’ve been flipped by saying that it probably saves lives as well. This is an amazing idea and I kind of imagine it will take too long before it expands into a much wider audience and helps more people and supports more people with their mental health.

DEBRA: Today I am talking to Kimmy Obongonyinge who works for an organisation called XenZone which is helping young people with their emotional well-being. Welcome, Kimmy!

KIMMY: Thank you, Debra. Yes, just a bit of introduction, my name is Kimmy. I’m incredibly passionate about mental health. I had been since the age of 13 so it’s really great to be working for mental health company like XenZone which provides this really wonderful national service that I’m gonna be telling you more about in a moment. So yeah, I just want you guys to know about it, to know kind of that it is available to you and that it provides completely safe space. It’s very unique to a lot of other services. So yeah, I hope you guys log on later and find this information helpful.

DEBRA: Can you just tell us a little bit about you said you’re passionate about helping people with mental health, can you tell us about your background and how you got to work for this organization, really?

KIMMY: When I was growing up, I was really interested, I’ve always been interested in kind of pediatrics and supporting young people but like most young people, I kind of didn’t know which direction to go in, but when I was diagnosed with ADHD, then I was kind of going through the process of diagnosis and that is when I first kind of really became passionate about mental health because I start to look into my own mind and kind of how my behavior and mental health was linked to things like that.

So yeah, then I studied Psychology at college, I then went on to study Psychology at university, I did an undergraduate degree and when all I came out from university, I worked in a mental health crisis centre called the Haven Centre and where we’re supporting young people who would describe themselves as in mental health crisis, a lot of them did have additional learning needs. We did get a lot of young people with autism, we got a lot of young people with dyslexia and things like that because there is definitely a link between sometimes additional learning needs and mental health as well. It’s because there’s a lot more first to consider if you’ve got an additional learning need.

And then eventually, when my contract was up I went for 3 months and did an internship with the aid support organization there to learn about the relationship between physical health and mental health. And then when I came back, I was looking into jobs and I came across this really amazing role in XenZone where I get to go into schools, raise awareness of the service as well as provide mental health provision in those schools. So that’s how I got involved with this organisation.

DEBRA: Can you tell us about the organisation and what exactly they do?

KIMMY: XenZone is a mental health company but with a twist because a lot of it is about digital mental health support. The reason it came about as an organization was because we saw that actually was this huge gap in mental health provision because a lot of it relies on you being able to meet with individual safe space but we know that actually there were a lot of different barriers that individual’s experience when accessing mental health services and one of the biggest barriers that people experience is just that discomfort of meeting with a complete stranger the first time feeling like you have to divulge and give away all this kind of puzzle information about yourself about your deepest fears and concern with a complete stranger.

So we thought you know what let’s actually create a service that looks about how we can reduce those barriers, let’s make it an online platform. So if we do get an individual who does really struggle from anxiety, who maybe doesn’t feel super confident in social situations, they have a space in which they can talk to someone about how they feel and get support and don’t necessarily have to leave the comfort of their own homes. So we provide the service. At the moment, our strongest service is Kooth which is for (and our most developed service) it’s for young people but we’re also developing service for adults called Qwell in addition to a service specifically the students called Kooth students.

DEBRA: So exactly what happens… what’s the process if someone… so this is all done online, so do you have people online? How does it actually work?

KIMMY: So with Kooth, there’s no voice involved, there’s no video calling involved because we know that just as adults, we can feel a lot of anxiety when it comes to calling people and video calling and things like that. So, we’ve actually made it all what we call asynchronous messaging which is very fancy way of just saying text messaging.

So the way that a young person, if they are looking for support and they do wanna talk to a counselor, the way that they would do that is to something that looks very much like an iMessage conversation or Facebook Messenger conversation or Snapchat conversation, it’s all text-based.

DEBRA: So they just go on the website and they type in their concerns and then someone will come back and feedback to them?

KIMMY: Not quite. So what happens is the young person will type in www.kooth.com then go to kind of the homepage and they would have the option from there to sign in. When they sign in, they have to select the place they live because we are already available in very specific areas of England at the moment because we’re funded by those local authorities. And then the young person would put in other data about themselves, about their age, their ethnicity, and how they perceive their gender. We never any point ask for their name or their exact address. We just ask the place they live so for example if you’ve got a young person who goes to school in London in Harringay, that box there, they’d put Harringay area.

And then once they’re logged in, they have access to loads of different resources, peer-to-peer support as well but if they did want to chat specifically to a counselor, maybe he just wants the space to vent, you could go to Chat Now option which is very, very big and bold. There’s no way you can miss it. And from there, you’re going to small waiting queue. Usually, the wait is from 5-10 minutes, and when a counselor becomes available, they’ll let you know that you have 5 minutes to jump into a chat with them and then from there, you would get the support that you need. And the first kind of conversation would be a very informal assessment just to find out what your concerns are, what is your level of need, what support you want over the next few weeks.

DEBRA: So what kind of things do people contact Kooth with? What kind of concerns do a lot of young people have?

KIMMY: So we got a lot of young people who are struggling with anxiety. I think that in itself is one of the more common mental health disorders that we’ve seen in young people today and that is definitely reflected in the young people that utilize the service. We get a lot of young people who are struggling with exam stress and anxieties around exams, stress around options and often linked to anxiety.

We do see a lot of young people talking about some harm and looking for ways to overcome or to find a more healthy coping strategy. So we get a lot of young people using it for various reasons but I think the most common is definitely anxiety.

But we do get a lot of young people who in situations where you kind of feel like “I don’t know who I can talk to, I don’t know where I can get support from”. We get a lot of young men involved in gangs utilizing our service because they don’t know where else they can get support and it is a completely safe space because it is completely anonymous. Those young people who know that actually they can talk to someone and this information isn’t gonna leave that safe space. So we do get a lot of young people who are involved in situations where they might usually feel like there’s no one who can understand or relate to them and might not know where to go to for support.

DEBRA: Is there a sort of set of strategies that… say for something like anxiety, is there a set of strategies that you guys would recommend people to sort of start with?

KIMMY: So generally, a lot of what the counselors do is to empower the young people to be engaging with face-to-face services and school counselors and things like that or talking to parents, talking to friends about what they’re going through but our counselors are all highly qualified and trained staff so a lot of what they do is not so much talk therapy which is someone what we perceive counseling to be but actually it’s all about being proactive and actually managing your mental health so the counselors will go through cognitive behavioral therapy technique, dialects behavioral therapy techniques (DBT) to enable the young person to kind of look at the things their lives that are causing them maybe stress or anxiety and then go from there, looking at how they can kind of disassociate anxiety with those things that make them feel anxious and maybe helping them to have a more positive perspectives of those things that make them feel anxious rather than focusing on the negative thing.

DEBRA: So you said there’s resources as well available on the website, is that from other people talking about their own experiences like case studies or is that again tactics strategies? What kind of things do you have available?

KIMMY: So there’s a variety, we have a space called Kooth Magazine. I mean, it’s a really great space, we have a huge and a really collective community of young people who use this space. I mean, it’s a space for young people to write an article maybe, to write stories, spoken word piece, a rap, whatever it is that they want to do to express how they’re feeling. So it doesn’t even necessarily have to be directly about mental health and well-being. It could be about a topic they’re passionate about so, for example, the other day I saw a really great article on Black History month where a young person was talking about why it’s important to her and educating other young people on why maybe they could engage with things going on to their community that was related to Black History month.

So, it provides people with a space to share things that they’re passionate and interested about but directly if we’re talking about mental health, there’s also loads of things that young people post on that space relating to mental health so I saw a really nice poem the other day it was called Dark Poem and it was written by a young person who was sharing their experience of depression and loneliness and it was really great because at face value you might think actually that’s really negative but actually, it provided this young person with a space to express how they were feeling and also it provided other young people who are reading that with the opportunity to know that they weren’t alone. That if they ever feel that way, that actually there are other people that feel that way.

So there were comments underneath the poem like Thank you so much for sharing this, it’s really brave of you and there were other comments that said I know exactly how you feel and this is what I do in those situations: I listen to music, I go to the gym, I do this. It’s a really great platform for peer-to-peer support. And then we also have forums as well where young people again can express how they’re feeling in one place under a theme and other young people can comment and post and give advice and strategies on how to deal with that.

DEBRA: And obviously, it’s a much safer than the sort of broader online forums that young people can access generally.

KIMMY: Yeah, definitely. So everything on Kooth is monitored 24/7 and we do something called pre-moderation. So before an article goes up, before a comment on the site goes up, it’s moderated prior to that so we can make sure that the site remained safe and supportive. So nothing will go out without being monitored by our online team if we do think something’s not appropriate we’ll send you a private message and just say “Hey, maybe you want to rethink how you say this.” just because we want to remind you that this is a safe and supportive space. So there is no opportunity for any abuse or anything like that to be on the website because it’s pre-moderated. All of our articles are also monitored by our clinical team as well to make sure that the support and advice that’s given on them is appropriate and is safe for young people too.

DEBRA: Just to talk I suppose in more general terms because as you’ve said this service is only available in small parts of the UK and we’ll come back to where you want Kooth to go in the future but what sort of suggestions would you have for a young person or a parent more likely listening to this and they’re concerned about the mental well-being of their young person who has additional needs. What kind of strategies or what kind of suggestions would you have in a more general sense?

KIMMY: So I think the first step for a parent and for a young person who’s going through a mental health challenge would be to acknowledge that. We all have good and bad days, that mental health is something that every single human being has and just like we can engage in activities that improve our physical health like eating healthy food and exercising. And there are lots of things that we can do, practical things that we can do every day, to contribute to a positive mental health. And also acknowledging that you might be feeling really rubbish today but you might not feel the same way tomorrow. A lot of mental health conditions they’re not chronic, you might be depressed, you might be more vulnerable to feeling depressed but actually there is always a way out.

So this is in general things that I always advise young people to do. They’re really practical and really easy things. They don’t require to go out of your way in any way, it’s just something that you can put into your daily routine to achieve good mental health. And one of the kind of top thing is to get seven to eight hours of sleep. So I know it sounds really, really boredom, really general but sleep has a huge impact on our overall well-being and sleep is important because it enables our bodies to repair, to be fit and ready for another day but alternatively, the lack of sleep can make us grumpy, it can make us feel really rubbish just emotionally and it can make us difficult for us to focus and learn. And regular poor sleep can have a huge impact on our physical and mental health as well going on to the future. That more often than not, a lot of young people aren’t getting seven to eight hours of sleep and that in many ways does contribute to poor conditions like depression and anxiety because your body is not having the opportunity to repair and recuperate.

Another tip would be to try and engage with your hobbies and interests and if you don’t do that already, to find something you can engage with, to find something that you enjoy doing. There’s so many opportunities in your local communities, so many things that young people can access for free, whether youth group or music group. There’s so many things that young people can be doing to keep their minds healthy and to keep our bodies healthy as well and it’s really important to engage with our activities that we enjoy. Even when life is busy because I know when life is busy we can avoid doing the things that we can enjoy or we can neglect those things because we’re trying to keep up to date with our homework or coursework. Then in the process we’re not taking care of ourselves. It’s really important to encourage your children and to encourage your friends or to just to encourage yourself to get out there and to make time for those things that you enjoy doing.

It’s really really important as well to stay organized. So these, like I said, they’re very very general things but staying organized is one of the biggest contributors to anxiety. We get a lot of people using Kooth who anxious because of exam stress because of course back stress, and a lot of the time they could have prevented themselves from being in that situation just by remaining organized.

And just a final tip is to avoid avoiding things that make us feel comfortable or anxious. So today, like I said anxiety is one the more common mental health disorder in children and young people and in adults as well. And many of us avoid the things that make us feel anxious but by avoiding those things that makes us feel uncomfortable and anxious, we’re actually not helping ourselves at all because we’re not training ourselves to build the resilience we need to overcome those situations and it can mean we missed out on a lot of great things and the only way to overcome anxiety is to face it head-on.

I’m not talking about jumping straight into a situation that makes us feel super uncomfortable and super anxious but rather trying to slowly expose ourselves to those situations where we go anxious. So for example, maybe school makes you feel anxious and because of that you’ve been avoiding going into school for a significant amount of time. Instead of avoiding school, maybe try going in one day a week over a couple of hours a day to slowly get yourself back into the routine and build up the resilience to deal with that situation.

DEBRA: Okay, because you mentioned before about the fact, a lot of people are lonely, do you think that even though we’re connected in a social media sense, it seems to me that particularly for young people with additional needs, they can get lonely anyway because they’re sometimes cut off from their peer group because they don’t necessarily have the same freedoms to go out and do things. Do you think that’s a real big contributor? People feeling lonely and thinking that they’re the only person that has felt like that?

KIMMY: Definitely. It’s definitely one of the biggest contributors to depression because we’re then left with ourselves and our negative thoughts that can kind of spiral out control when we’re on our own. So it is really important, but alternatively, there are lots of things that young people can get involved in. Even if you do you have a physical disability and maybe you do you feel trapped in your own home, you feel like you physically can’t get involved in things. There are a lot of opportunities in your community that are accessible for you to get involved in and there are loads of young people that can relate to that feeling of loneliness regardless of why they’re feeling lonely. Sometimes it can be difficult to fight but it’s always worth logging on to your computer or talking to your teacher or your home school worker or whoever is to find out what opportunities are available to you because it is really difficult to go through life on your own. It’s so important to be talking about how we feel but we can’t do that if we don’t have people around us and a network of people around us.

DEBRA: Which is I think why your sort of service is so unique in lots of ways because it can bring people geographically, you don’t have to be there, you can just log-in. Which kind of brings me to the final part of what I want to ask actually was around, what’s the future for the organization because I understand that you get the funding from parts of the UK but being an online service, do you see that being you’re able to offer that service in a much wider geographic way?

KIMMY: Yeah so I mean, actually there are very few parts of the UK that aren’t covered by our service at the moment. The service we provide, it isn’t specific. We don’t, for example, offer one level of the service to some areas and not another to another. We provide the same service in every single area that we’re funded to operate in but the service is undergoing a lot of exciting developments. We’ve got an amazing contract with a charity that supports deaf young people. So our counselors are all undergoing training at the moment to communicate with deaf young people because we understand that the way that you guys communicate via message– the structures and sentences are very different to how we would construct our sentences if you’re not deaf. So when the moment our counselors undergoing that training which is really exciting so we’ll be accessible for deaf young people who are a vulnerable group. I mean, who do struggle more with loneliness as well.

We are really trying to make sure that our service is able to support young men, they’re one of the target groups that we have at the moment. So we’ve got a lot of feedback from young men across the country to find out how we can make sure our service can be more engaging and accessible for them. And we are always working with young people to constantly develop our service. So our service changes a lot from year to year because we’re constantly getting feedback from people and we have Kooth ambassadors as well who provide us with all the feedback too, on how we can make sure that our service stays current and up to date and accessible for all young people, essentially.

DEBRA: Thank you very much for your time, Kimmy.

KIMMY: No problem. Thank you for having me.

DEBRA: Key takeaway? Mental health support can be delivered successfully in different ways in this case online. I think it’s an important takeaway because there’s clearly funding issues around mental health and support that are out there so this is a really innovative way to be able to do it.

Resources
XenZone
Kooth

Please subscribe to this podcast and if you have a story you would like to share I would love to hear from you just email debra@journeyskills.com

Please Review Us On iTunes

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Learning to Relax

Podcast Episode 73 Emotions are part of being human. But for many of us there are times when we wish we had better tools to manage our emotions. This can be especially true for young people with additional needs who often face extra internal and external emotional triggers. In this episode we hear from Dana Bishop a Relax Kids coach on some of the strategies that can be used to not only manage the way we feel but to harness these feelings and increase our mental health wellbeing.

Dana shares the 7 steps model of Relax Kids explaining each step and providing examples of how has used it. The steps model work around the idea that you can’t just decide to relax but rather you need to go through a series of steps which will help you get to that relaxed state you are after. Some of the tools Dana talks about are one’s we have all heard of like breathing exercises and affirmations but she provides a timely reminder that it’s the simple ideas which are still the best.

Being able to understand and manage emotions is key for our young people in their daily lives and a skill that most will need to explicitly learn. The Relax Kids model of understanding that to relax is a process not just an end, and knowing what the steps are, will be for many people an invaluable addition to their emotional toolbox.

Show Full Transcript
Podcast Transcript
DEBRA: Welcome to Episode 73 of the Journey Skills podcast. I recorded this episode a while back but kept it in the bank so to speak because I felt this would be an ideal one to put out just before the Christmas holidays in preparation for a period that we can all find a bit emotionally overwhelming. But it’s also a time where we have more time to reflect, more time to spend together, and to do the kind of things that we’re talking about in this episode.

I’m talking to Dana Bishop about the Relax Kids program. Dana is a Relax Kids consultant and she shares the 7 steps that the Relax Kids program actually uses. Dana was just really sharing some simple tools and I think it’s really easy to forget the simple tools are often the ones that work the best. So she’s just talking about things like affirmations, and this is one of the things I took away from talking to Dana. And I’ve actually been working on this with my daughter. And it’s a really simple thing to have affirmations everyday but it can make such a difference to a young person particularly if they have some confront issues.

There is some other great ideas she shares as well so I hope you get something that you can takeaway and use over the holiday break. Of course Relax Kids is a business, so I should say that this is not an advertisement or endorsement of the program but also like to say that I really appreciate Dana being so generous in sharing her knowledge.

DEBRA: Today I am talking to Dana Bishop from Relax Kids. Welcome, Dana.

DANA: Hello.

DEBRA: Can you tell me, first of all, a little bit about yourself and then about Relax Kids?

DANA: I got involved with Relax Kids about 18 months ago now and I found out about it through a friend who has got a daughter with medical needs because my son himself has got long-term health conditions and was really struggling with his emotions and he was saying horrendous things that he wanted to die and he just wasn’t coping with life at all. And we weren’t actually getting any support for him emotionally. So I thought I need to find something to help him.

And then my friend told me about Relax Kids which I hadn’t actually heard of. It’s actually been going for 19 years, believe it or not, but still some people don’t know about it. And I looked into it and I thought this is what he needs. So about a year later, I did the training and very quickly I noticed that the techniques which I’ll talk about in more detail in a moment, was starting to help my son deal with his anxieties. So really, it’s been absolutely fantastic, not just for him, but our whole family, for his brother as well who was hearing these horrific things that my son was saying. I wish I’d find out about it sooner, really.

DEBRA: So can you talk me through, say for example someone comes to Relax Kids, what’s the process and where do they start?

DANA: So, Relax Kids follows 7 steps. So we take children from high energy through to relaxation. These 7 steps include movement, play, yoga stretching, self and peer massage, affirmations, deep breathing techniques, and relaxation. And to find that it’s a natural.. the steps, take children then from not suddenly being high energy to expecting them to relax really quickly. You’re more naturally coming down to relaxation by following those 7 steps. When I carry out the sessions with children that by the time you sort of get to the stretching and the massage, they’re starting to calm down getting them ready to go into the deep breathing and the affirmations and relaxation. So all sessions follow 7 steps.

DEBRA: So, the 7 steps, can you just go through them and talk about what happens in each step?

DANA: Yep, so for example we start with movement and play. This includes high energy and fun and games so children increase in their heart rate, might to do with some team building with the group and really the movement and play are the two lively steps. But if I was doing this with a one-to-one (because I do one-to-ones as well as groups) what I tend to do with the movement and play is I include quite a lot of games where I’m getting to know the child. A quite mindful games like Jengga or Solitaire and I’m talking to the child as they’re playing as well. And often children, when they’re playing a game, they don’t actually realize that they’re opening up because they’re more relaxed.

So I adapt the sessions because obviously the games that I might play in a big group of children aren’t always going to be suitable for a one-to-one and actually I work with a girl who was nonverbal and what I did for the movement and play part was I used a lot of sensory activities. So we played with multi-coloured rice, pasta, slime that actually really enjoyed the sensory aspect of it because obviously the normal games that I would have picked into place weren’t necessarily going to work with her being nonverbal.

And then we go onto the stretching which is basic yoga stretching to stretch out the body and awaken the body ready for the rest of the session. I’m not a yoga teacher but I’m able to teach them basic stretches. And these can actually be really good because you can adapt them again for the classroom. So, say for example, a child gets seem restless and all their hands are aching with lots of writing, I can teach them exercises to stretch out their hands or stretch up to the ceiling. Just things that they can do that they’re seated instead of having to move around. So again, it can be really adaptable.

And then the feel part is the massage, which actually, with children as well that I’ve worked with sensory issues and the parents might say to me, “I don’t know if they’ll like the massage.” I’ve actually found that the massage is often the favourite part. And I teach them how to do a massage on themselves like a relaxing phase massage or hands or feet. Or if sometimes in my sessions, it might be the whole family session or with a sibling. I’ll teach them how to do it on to each other or if the parent isn’t there, I’ll teach the child how to do it so that they can do it on a parent or parent can do it onto them. And we include massage because again massage can be really relaxing and really lovely bonding activity between a sibling and a child or a parent. And again, if a child didn’t like massage (I haven’t found that yet), I would adapt it in a way in which I say, “Well let’s do it on a teddy bear” so that they don’t have to do it, touch themselves if they weren’t too keen. But I do actually find that they really enjoy the massage.

And then we go onto the deep breathing technique. I say that this is one of the really important steps because it’s the deep breathing that can really help to calm you down. And I sort of explained it, when you’re taking the deep breaths, it’s because you’re focusing on that breath, that you’re concentrating on that instead of being really whine up or angry or really anxious about something. And I make it in a fun way, so we use feathers. Yesterday with a little girl, she was blowing her worry bubbles away. We use things like a breathing ball, which basically is showing them visually what’s going on with a diaphragmatic breathing because when they’re breathe in, the ball goes out and when they breathe out, the ball goes in. So it’s very visual.

So I’m not just necessarily just making the child sit there and just do deep breathing, I make it fun. And as I said I think the deep breathing is one of the most important steps. And things like hand-breathing where they trace up and down their fingers and I’ve had one little girl who was going back to school having been home-schooled. Her mum was saying, “She would sat in the car, focusing on doing her hand breathing before she went into school.” And again, that’s something that you can use anywhere because obviously some of the things like using the feathers and the props, that’s not adaptable but you can just use your hand breathing under the desk. So, I include activities that they can use anywhere as well.

And then we move on to the affirmations. And a lot of children have absolutely no idea what affirmations are. So I explain to them, we call this step Believe actually. The affirmations are about saying kind words to believe in yourself. And they’ve often find this quite strange at first because saying to yourself, “I am amazing, I am calm” can be quite alien because you might have somebody saying positive things to you but teaching somebody to say positive things themselves is quite new for them.

But I say things like looking into a mirror so you really believe in yourself. And my youngest little boy from four years old, he would really confidently do this because he started from so young. And actually, that step I find really powerful with my eldest and his health issues because one of his conditions is he’s got a really severe skin condition and he gets very itchy and he would keep calling us and calling us for help but now he would say, “I’ve said my affirmations, I’ve said I am calm. I can do this but mommy I’m still itchy, can you help me?” So, he’s really using those to help him. I often give children affirmation cards at the end of the sessions to take home so they’ve got the visual representation or I put them into my boys’ lunch box so they can see it at school. So affirmations are really powerful.

And then we end with the relaxation. And the relaxation, we use books from Relax Kids and relaxation is obviously great as the word says the relaxation book. Fantastic also for children using their imagination because all of their meditations are written around themes like amazing hues, the happiness way. So I had one child recently who said to me after the relaxation, “My goodness, I was really there. I was really in that worry balloon. I could really feel myself and see myself there.” So, it’s fantastic obviously for relaxation but the imagination side of it as well, it’s fantastic.

DEBRA: So, you say you’d deal with younger children, when it comes to older children, how can they use the same sorts of things?

DANA: So Relax Kids is really adaptable. Some coaches going to care homes and do relaxation with elderly people with Dementia. There is a specific program for 10 year olds and sort of going into the teenagers called Charge Up but we still follow the 7 step techniques but obviously it’s adapted to the older age group.

DEBRA: Have you found then some of the children you work with, they’re starting to use that without you being around, they’re using all these techniques. All the techniques or do they pick out, you said about the breathing techniques, do they pick out individual bits or do you think they’d run through the whole thing or they just find something that they can relate?

DANA: I think what you’re saying is true actually that often there might be one aspect of it that really touches a child and it might be like with my son, he tends to use the affirmations a lot and then I got a message from another parent who will say, “Oh, so they really practicing their breathing and they love using their worry bubbles or the different props.” or again, another child loves using the relaxation books. So I think you’re right. Not necessarily that they follow those 7 steps because actually when I do a session whether it’d be one-to-one, community, family, or in a school, they tend to be 45 minutes to an hour long, so for a child to sort of run through that themselves is a long amount of time.

So, it seems to be that they dip in and out of what is the favourite step or again the massage actually I get quite a lot of parents who say, “Oh, we’re loving the massage. We’re doing that every night as part of our routine before we go to bed.” So I think it is more… I think the most popular seems to be the massage, the breathing, the affirmations, and the relaxation because I think with the movement, the play, and the stretching, that tends to be something they’re doing more as a group or as part of the 7 steps. I mean, they might use these steps– the stretching in school if they’re at their desk and they’re getting restless but I certainly think that actually the more calmer step are the ones that they’re using more often.

DEBRA: Because the other ones they don’t necessarily need all the time…

DANA: I think that’s what it is actually and they find the movement and the play, and the stretching— they’re great because they’re part of the 7 steps but I think, often my feedback (because I ask for feedback sort of at the beginning and end of my session) they love those steps but they’re the more lively and fun steps and I think you’re right, the other steps they’re using to put into place when they’re in those difficult situations and struggling with those difficult emotions.

DEBRA: This seems like quite a simple idea doesn’t it? Going from a very stress to unstress but having those different steps. Putting you on the spot, do you have a favourite? Do you think there’s one that actually you find makes the most difference to people? I know you said your son prefers affirmations but is there one that you think for example parents who are listening to this could take away and go actually ‘Just use this one and this will really help you straight away’.

DANA: I mean I think I love the relaxation because I remember when I first started doing this, we live in such a busy world. You know, everybody having to work and juggling work and school and being parents and children have a really busy lives with all the after-school clubs and hobbies that they have. And actually seeing children laying down at the ends, snuggled up with their blanket with cushions and cuddlies and often now laying there for a walk can be up to 15 minutes, relaxing and calm, I found that really powerful and I know that Marneta, the founder that was one of the main reasons that she developed and created Relax Kids because she was actually a clown and she was doing children’s parties and finding that even in a really sort of fun, lively situation the children just weren’t focusing on her as an entertainer and she just sort of “What is going on?” So when you’ve actually got those children calm and listening to a relaxation and being at the moment, I find that really powerful with us all having such really busy lives.

DEBRA: But when you say that, it does sound like you couldn’t get to that last point without doing a couple of the other things.

DANA: You’re right. I do think that the seven steps definitely are created because they get you to that instead of some schools are really trying their best I know with all the time constraints that they’ve got and the children were coming from the play time and they might say “Alright class put your head on the desk.” and trying do short relaxation but the children are so sort of whine up and lively to suddenly go from being lively to put their head on the desk and trying to relax is really difficult which is why the seven steps work. But the relaxation can be still really effective by itself. It just does work better if part of the seven steps. Saying that at bedtime using the relaxation, Relax Kids CDs or the books can be really effective at bedtime. You know, when you’ve got to that calm place with maybe bath and reading and then putting on a Relax Kid CD or using one of the books. One of them as well the Dream Machine is more interactive where the child goes on a mindful journey. There’s a hundred thousand different story options and there’s use of meditation, the breathing, the affirmations and even though that is more interactive that one is really popular as well for bedtime. So you certainly can use it as a standalone step and I think once a child has been introduced to the 7 steps, they are then more able to use it by itself but I’m just saying especially when you’ve got a big group of children to get them through to those seven steps through to the relaxation is just more effective because it’s their natural energy state. Especially for doing it at a different time in the day when they may be more lively.

DEBRA: Can you tell us about the resources that are available, you just quickly mentioned there books but what else is, where would people go to find out more about Relax Kids and what resources are available for them?

DANA: So for example relaxkids.com you can see the store on there with all the different books that have been written. There’s a fantastic new book coming out. Right now I think it’s in pre-launch called The Imaginarium which is going to be brilliant for the teenage age group. There’s also cd’s on there as well. And also, there’s often free resources for example a 21 day program for relaxation. October affirmations so you can print that out and read different affirmations. There’s usually at the beginning of the year an affirmation calendar for the whole year. So there’s lots of different resources on there. There’s also our Relax Kids Facebook page and also I’ve got my Relax Kids Facebook page which is Relax Kids Tadworth and Walton with Dana and I often put ideas on there and resources but the relaxkids.com, there’s a lot of information and resources on there that parents can buy and use at home.

DEBRA: Dana, thank you so much for your time.

DANA: Thank you.

DEBRA: Key takeaway? Often solutions aren’t just one thing, sometimes it’s steps to solutions or a few different things working together.

Resources
Relax Kids
Dana’s Facebook Page

Please subscribe to this podcast and if you have a story you would like to share I would love to hear from you just email debra@journeyskills.com

Please Review Us On iTunes

If you liked this podcast and would like to help us, please do the 1, 2, 3:
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Attracting The Best Person For The Job At Specialisterne

Podcast Episode 72 Everyone has unique skills; everyone is a specialist in something. This is something this week’s guest Thorkil Sonne from Specialisterne understands completely. Specialisterne translates from Danish as “The Specialists” is an organisation focused on helping young people with additional needs find meaningful employment. The focus is on matching the skills of the individual with the role not trying to make the person fit the job.

Specialisterne have also developed a unique approach to assessing the skill of individuals in a way that enables them to showcase their individual skills as well as show how they work in a team. This is in recognition that traditional interview approaches limit the opportunities for young people with additional needs to fully illustrate what they are capable of.

Specialisterne also work with employers proactively, to not only help them maximise the skills of their employees but, with practical support around what reasonable adjustments might be necessary in any workplace.

Specialisterne also has a much wider purpose than just helping people find work, they are on a mission to show employers how they are missing out on utilising an incredible pool of talented individuals with specialist skills that could give their organisation a competitive advantage.

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Podcast Transcript
DEBRA: Welcome to Episode 72 of the Journey Skills podcast. This episode, I’m talking to Thorkil Sonne from Specialisterne which is an organisation that aims to change people’s mindsets around what makes a great employee. Thorkil explains why and how Specialisterne came to be, but this one to highlight a couple of things that I think are really important. The first is about the interview process. And speaking for my own personal experience with my daughter, I can already say that a formal interview process won’t really bring out the best in her. It won’t show potential employer what she’s capable of. So one of the innovations that Specialisterne has is an interview process that actually doesn’t include an interview.

And second, the idea of training and supporting employers. I think this is really key when it comes to increasing employment options for young people with additional needs. There are already schemes out there that help people get into work. The challenge for many seems to be staying in their jobs. And one reason I think for this is (and this is really coming from speaking to lots of employers on the podcast interviews) is an employers need to be trained as well and they need to be supported. And making this a key part of what we do to increase employment opportunities is in my opinion key to going forward because as it is being said by many people on the podcast, it’s about understanding, it’s about awareness, it’s about acceptance– acceptance of an individual’s skills, acceptance of the individual, and also seeing what they bring to the workplace and to a team. And Thorkil talks about that as well. Certain more about how Specialisterne is helping employers to harness the under-utilised talents of so many young people.

DEBRA: Today I am talking to Thorkil Sonne from Specialisterne which is based in Denmark. Welcome, Thorkil.

THORKIL: Thank you, Debra.

DEBRA: Can you tell me a little about the story of Specialisterne?

THORKIL: So 20 years ago, I was technical director in an IT company. The traditional family life– 3 kids. When my youngest son was diagnosed with autism, the idea of a perfect family was challenged because we didn’t know better at that time. Suddenly to have a disabled child among us, it made us reflect on a lot of things and we’d read books about autism and that kind of documented why we should not expect too much and why our son should not expect too much. But even though we as parents took some tumbles then nothing changed for our son. He was the same wonderful child the day before and the day after the diagnosis.

So when we realised that, we skipped the trap of pity that many fall into at that time and we thought, well the most important thing is how can we support his development and how can we do what we can to make sure that he’s included like everyone else like his older siblings, like everyone else. So we came to a conclusion, instead of trying to train our son to behave like a non-autistic child so he could get a job, one day rather see if we could change the labour market so be more understanding and accommodating and creating zones for everyone where they can excel instead of having a few standards to you had to fit into.

In my career as an IT professional, I knew how difficult it is to find people who will hide pride in what they do, high accuracy, attention to detail, critical thinking, honesty.. they’re hard to find. But I also learned that there are a lot of people out there with those characteristics who don’t get a chance just because they don’t live up to the social expectations in any occupation. So I decided to try to change that and I quit my job and started as a social entrepreneur with Specialisterne in 2004. Specialisterne by the way is Danish for Specialists who want to create a room in the labour market for those who are not just generalists and fit the expectations from recruiters.

DEBRA: When you started the organisation, did you partner up with employers? How did it kind of started?

THORKIL: It started in a way where my former employer, I went to the HR Director and said, “I love working here but I feel I have to do something else.” And I told him about my son. My experience from them when I was acted being in Autism Denmark, so many who don’t get a chance while there are so many unfilled jobs. And I feel I need to try to make a change here. And then, my former employer we agreed that I should discuss with managers in my former employer company to see if they could be the first client and so I had talked to my former colleagues and a lot of them said, “Makes sense. We need to have tasks sort and many of these tasks good be a good fit such as software testing, data-analysis, data entries.”

So when I signed my resignation, I also signed the first client contract. So that gave me room to work on the essentials; how do I organize. I never went to business school, I did not know how to start a company but I feel I had to. So I tried to figure out how do I figure out what autistic people are good at? My competitors, they’ll hire the ones with the best resumes, CVs, job experience, education. I claim that there’s a lot of raw material among autistic people that can be utilized but what is it, how do I find it and how do I create environments where autistic people can excel, what they’re good at instead of trying to predict how to interact correctly the next situation.

So I went to Lego because I found out when meeting with other parents that one of few areas where many autistic people excel is when they play with Lego, so there’s some kind of systematic that could be a window to view on what are autistic people good at, motivated for. Communication is one of the challenges and when they’re not good at selling themselves and writing above themselves, how do I find out so that it would end. I thought if I can make them show me instead of telling me about themselves, that’s one way to grow.

And I went to Lego and came back with a Lego mindstorms robots that turned out to be a wonderful tool for creating playful environments where autistic people thought they were playing but actually they were showing us a lot about motivation, vulnerability, individual skills, shared skills and professional skills. So that worked out well.

I started up in a small city. I didn’t have any startup capital, I had to ask my wife if it was okay to mortgage the house. She said yes and we’re still married but I had no money when we started, only the contract with the employer and upfront payments. So whatever chances came we have to sold it because it was not a parking ticket it was a family’s economy that was at stake almost from day 1.

So I went to employers and with the case from my former employer that’s now called TDC in Denmark. I went and got my second employer and third employer and then BBC Worldnews came along and suddenly it was a story globally. And there I receives requests from all over the world from more than a hundred countries who were saying, “For our kids’ independent future, please come and do something in our country.” And when families contact me I cannot say no because I’m also a parent. I do understand their frustration and their hope. I guess I can say, “Be patient.”

And then I founded Specialisterne and the foundation in 2008. The goal to generate 1 million jobs for autistic people and people with similar challenges around the world. So this is now the platform where I’m the chairman of the foundation. I’m associated with the world economic forum as what the foundation social entrepreneur and Ashoka fellow global network of social entrepreneurs and Specialisterne Foundation is associated with United Nations. So we have some big stages to work from and then we started Specialisterne in other countries. We now have operations in 12 countries. We worked with big employers around the world and we’d been copied by so many. We love to be copied. So probably my estimate is that probably 10,000 autistic people have gotten a job because of what we started back in 2004.

DEBRA: Let me go back to the bit about the robot, so what you got was the guys I’m assuming playing with the robots and from that you work out what their skills were, what did you then do in terms of going to the organisation and saying, “We have a person with these skills, these skills, and these skills.” How did that work? Because obviously you’ve identified in the young people what they can do, how do you then translate that to the employer and say, “This would work with this job.”?

THORKIL: Well we basically have two models: one is that we assess and hire the autistic people ourselves. And then we go out and offer consultancy services to clients. And in that situation, then we would know very well what the autistic people is good at and then we’ll go and sell that as a service. And then we can target clients that has a need in the area where the autistic people excel. So that’s kind of straightforward. We are the managers, we are responsible that everything works. So that’s one way. It’s a kind of a low-risk way because we’re in control of it all. But 90% of the autistic employees work at the client’s site so that’s a lot of engagement but it’s our employees. But it’s hard to scale and it’s very cost-heavy. The most scalable solutions is to help pick companies recruit autistic people. And in that case, if it could be Microsoft, SAP, EY, PWC, there’s many examples out there who have said, “Well, the autism in my brand it’s sounds interesting to us so we have some jobs here, maybe inside the security or in data design or data mining or something, could this be a good fit with autistic people? Then we go and visit the company, we meet the leadership, the management, the grass roots in the company because in all companies, there are family members who have a big patient for autistic people or people with similar challenges. And we like to contribute as buddies or mentors or somehow else take part in this.

Then we go through the job descriptions and kind of feel–“Do you really have to have many balls in the area to be flexible, to be good at selling yourself for a role in data mining?” And often they say, “No, actually not.” But this is kind of a standard job description. So we take some parts out typically that is not really relevant. And then we get an impression from the employer is this an employer who is willing to adapt the management style in order to support autistic people in the workplace. We don’t want to work with any employer. We expect 4 values; one respect that autistic person can add value to a diverse team and that yes this person has a formal disorder but you should expect the same as you would from anyone else because you should work with us because of talent acquisition and not because of CSR.

The second is accommodation. We had to create workplaces where autistic people excel so if it’s an open office environment, it should be okay to have noise-canceling headsets and small dividers if that’s what is needed for the person to feel comfortable in the work zone. And of course, there are flickering lights, we’ll have to deal with that but there’s always a solution to organise that.

The third value is clarity or transparency. It has to be understandable what is expected from you. So, say what you mean, mean what you say. Set expectations clearly. In return, you will get a very honest feedback and you will learn to appreciate that. And the fourth is accessibility. So if there’s need for guidance, if the person is getting stuck, the person should always know where to go.

So with respect, accommodation, clarity, and accessibility– this is really good management and what the examples from employers is that it creates a better workplace for everyone in that department. So, we claim that a workplace where autistic people thrive will be a better place to work for everyone. So, we have a 4 week standard assessment and on-boarding program where it all takes place at the employer because many autistic people have never been in a workplace before. Some have but that had been a bad experience. So we need time to kind of create the individual’s comfort zone in the workplace.

We train Lego Mindstorms, we get settled in the workplace in week one. Week two, we grow from an individual to a team comfort zone. We introduce Lego Mindstorms robots in a scrum setting. Scrum is an agile development framework where you learn how to work with others, how to optimise your own contribution compared with what is the capability of your team members and you learn how to deal with rapid decisions that takes place in most workplaces. So we have a scrum week where we give the challenge. They have to solve with Lego mindstorms robots in a team setting framed by the scrum methodology. So that’s actually it. Very often, I make it a moment when someone realise that they can actually work in teams and contribute to teams. They may have been told otherwise until then. But when you create these environments where people thrive and think they’re playing then a lot of things are possible.

And then the last two weeks we engage more in the assessment of professional skills, individual skills, motivation, work ability and we train the manager, buddies, mentors. So the workplace, it’s introduced to how to understand and work well with these new colleagues. And then we set up a support structure. So, the autistic people when hired, they have peers, a go-to person for understanding daily routines, a go-to person for kind of workplace questions and there will be HR person connected and then we’ll have connection to a professional outside the workplace. Someone who have more expertise in autism and can deal with (if there’s) anxiety issues or something else.

Beyond the 4 weeks we describe a personal business profile of the individual and we translate that to the employers. So we create these environments where autistic people feel welcome and we do not just depend on one person, it has to be real inclusion.

DEBRA: So you very much sound like it’s focused on IT, is that the only thing that Specialisterne does or do you have other industries that you operate in?

THORKIL: We operate in many industries but the IT was the starting point and it has been hooked on to our brand, so far. Also thanks to the first big clients like SAP and Microsoft and these IT giants but we work very much in other industries as well. We have a lot of experience in the financial sector in Australia. We’re also strong in pig farming which is one of my favourites because in the outbacks of Australia, it can be difficult to recruit people who want to do a career in pig farming, but there’s a lot of autistic people who love working with animals. They’re just not thought of pig farming as a career but it has been a fantastic match and the autistic people have all enjoyed of work that has had a positive impact on the whole of the organisation.

So, from cyber security to pig farming, you can just imagine where good memory, sometimes better recognition skills, high accuracy in repetitive tasks, but also new ideas to solve traditional challenges. And honesty, and dedication can be used all over. I claim that in any business area, you would be able to find at least 5% of tasks that would be very well suited to autistic people and no one have clip me wrong in that assessment.

DEBRA: You talked about having specialists and I think there has been a trend, hasn’t there in the workplace to go to sort of generalist being able to do different tasks in any job, do lots of different tasks and that’s obviously something that a lot of people with additional needs don’t find very easy to do. So the whole idea that you could specialise must be key part of it as well why it’s successful because people can focus on what they’re good at.

THORKIL: Yes, that is the way you build your comfort zone but my experience is that as you build your comfort zone, you will feel more comfortable also to try out other things. So it’s important for us that it’s not enough to get a job, you should also kind of grow your comfort zone and your self-confidence and your skills so that you can also try out other things because in this job of mine, things change. That’s the only thing we can say. And it’s not enough to be an expert in one area and then close the door and work on that, you have to be ready to kind of find your opportunities as things change over time.

DEBRA: You’re saying that people’s skills just develop anyway because their confidence develops. A lot of people don’t have great social skills as you mentioned but you would get those just by being in an actual, real-life workplace.

THORKIL: I think so. And the way we grow social skills is a two-way streak, really. So, we help the autistic person understand how the workplace works but we also teach the workplace how autistic people think and how they can contribute the most. So, it’s not a one-way saying, “We have to practice social skills for the individual.” We’d like to do that but we also… it’s just as important to focus on preparing the environment because autistic people, they have their specialties that should be an asset in a workplace that competes in a global knowledge-based market economy, where being the same will be more of a problem that being different.

So I think autistic people can add value to most teams in a knowledge-based market economy. No one have to be able to excel in everything. So if you’re really good at your expertise and you’re good at working in teams and finding out how can your knowledge benefit beyond the task itself or if you’re in an environment where others can help you will contribute the most, then that’s the best way to prepare for the development in the labour market.

DEBRA: Yeah, I think it’s interesting what you said before about jobs specifications always saying the same thing like must be able to work in teams, and good communication skills. And there’s many people don’t have those so it’s stop from getting into jobs that they would excel at, as you say, so it’s actually about making the job fit to the person rather than the person have to fit to the job.

THORKIL: Yes, but I also think, we used to assessing autistic people who are outside their comfort zone, and then we can see a lot of challenges. But how does it look like if you get autistic people in their comfort zone. So, being outside the comfort zone for example communication is a challenge because it can be hard to read what is not had been expressed so that scene has a problem today. But actually, it’s a problem for everyone. So, if you’re in a workplace where there’s a lot of ambiguity, then you never know what you’re getting in return. So, if workplaces get more used to setting expectations clearly, then they can, I think, improve their communication capacity in the whole department. So, an autistic person well included in a team could actually raised the whole department; communication capacity and if the workplace understand how to get the most out of this autistic person, not just the skill sets but also the kind of personality.

So I think workplaces can learn a lot from autistic people but we have to turn things on their head sometime and say, “Okay, so communication is not a problem for this individual or is it the canary in the mine shaft saying if that’s a problem for this person, is it also a problem for everyone else?” And often, it’s the latter and if we look at the eyes at the world through the lens of autistic people sometimes, then I think we can see a lot of room for improvements in workplaces that could reduce the stress-level and grow efficiency into one.

DEBRA: You talked a little bit about the future, so where does Specialisterne go now? What are the plans for the future? You said the foundation, so I’m assuming that the organisation that does the consultancy and gets the guys in there is just running itself in a sense? Or are you still actively involved in that?

THORKIL: I’m not actually involved. My last involvement was to start Specialisterne in the US. So, I lived for 5 years in the US but I’m back in Denmark now, and I’m working on models that can lead us to a one million job goal by 2030. We still have 990,000 to go. But the next focus area will be large populations in the developing countries and we have most of our experience from the Western world, but we also have some experience from Brazil and India and China. But now, we need to invest more in learning what we have learned over the first 15 years, 12 areas, and what is the experience working with partners and how can we support employers and followers who want to follow our example. And then how can we work on the supply side with governments and the school system because we want to remove the divide, not just build bridges. So how can we get back to the roots and say how can we help families realise that there are some other learnings in life you will get out of this. Some will hit you, some will give you a lot of joy.

We have to create environments, not just in the labour market where autistic people will be welcomed, but also in the education system. So I think, that is the long-term contribution from Specialisterne and the foundation, that we will try to help companies with more inclusive workplaces and help the education system and governments kind of looking at this area from another angle.

DEBRA: You mentioned before as well that people have copied you, a lot of people will do amazing things but then, they’ll do it by themselves rather than taking information from other groups. So I’ve got some examples of employers over here in the UK that started something and then they’ll go and talk to someone else who started something similar and they never talk to each other. I mean I’d imagine, that you’d rather that people sort of came and looked at what you’ve done rather than sort of trying do something themselves… because it’s 15 years in and you’re still as you say, learning.

THORKIL: Yeah, I think what we’re looking for is more capacity in our foundation to kind of see not just what has been done in the Specialisterne and the group but also, a lot has been learned from followers, so this is one of our ambitions; to see if we can grow the market together instead of working as individuals. So, this is also I think one of the major areas to focus on. And another way is to see how can we use technology to help identify personalities and skill sets, and how can we also use technology to match the tasks with the talent. Not just jobs with job seekers because jobs are often a bundle that includes a lot of things that autistic people may not be so good at, but if we can identify tasks at a more differentiated level, then a lot of autistic people will feel they can contribute more.

Lots to bid on but I think the biggest effort will be to change the mindset globally that this is a different journey and there’s a lot of untapped talent that societies, employers should not miss out on. It’s too costly not to benefit from this talent anyway.

DEBRA: Thorkil, thank you so much for your time.

THORKIL: You’re welcome. Thank you.
Debra: Key takeaway? Employers need to be embracing new ways of assessing the skills of potential employees. By not doing this, I am missing out on many talented people– some of them specialists, who would enhance their workplaces.

Resources
Specialisterne website
Specialisterne on Facebook

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Flipping The Switch At Spotlight Brewing

Podcast Episode 71 Sometimes it’s the small ideas that can have the biggest impact and this is certainly the case with this week’s guest Ric Womersley from Spotlight Brewing. Ric founded Spotlight Brewing to make great beer whilst providing genuine employment opportunities for people with additional needs. Not only is Spotlight Brewing doing this very successfully but through their products they are educating their customers about the challenges people with additional needs can face.

In this episode Ric discusses some of the practical issues around setting the brewery up and running it. He also talks about the challenges they faced as a small business finding equipment, training as well as the obvious challenge of how to fund everything they needed. Spotlight Brewing is a social enterprise and Ric also outlines why he chose that structure over other options. He also talks about what’s next for Spotlight Brewing.

Spotlight Brewing is a perfect example of taking an idea and flipping the switch to get it started. The results are already amazing. Spotlight Brewing might be small now but it’s growing fast, not only in sales and the reach of its products, but, in influencing opinions and changing perceptions of what people with additional needs can contribute to business and community.

Show Full Transcript
Podcast Transcript
DEBRA: Welcome to Episode 71 of the Journey Skills podcast. I hope you’ll agree that this podcast has always been pretty diverse in the terms of the people and organisations that I’ve spoken to. If you listened to the last episode which was about Yoocan which is a global initiative to encourage collaboration, it makes this episode even more poignant in my opinion.

I’m talking to Ric Womersley from Spotlight Brewing which is a small social enterprise in the North of England. So one extreme to the other, really. The reason I mention this is because I think it’s important to remember that no dream is too big or too small when it comes to our young people. These projects couldn’t be more different but they used to do something amazing; they provide opportunity, they provide hope, and they provide all of us with the knowledge that if we want to do something similar, we now have that example to learn from.

We all want the same thing for our young people — a positive future, and interestingly I was somewhere last week where I heard parents talked about how they weren’t sure about what next. And I think we all get to that when we get near that infamous cliff edge after full-time education finishes. So really what this podcast to in a way share a light in what’s happening out there. Because there is a lot. And every single time I interview someone, I’m amazed and inspired by what people are actually doing.

Talking to Ric was no different. What he has done was simply amazing. I call this episode Flipping The Switch, partly because it’s about Ric just deciding to get on and do something but it’s also about Spotlight trying to educate people as well. But perhaps switching the light on for them that people with additional needs are capable of so much more when given the right opportunities.

I’m not sure if I’ve mentioned that I don’t actually drink beer. Yes, and if you’re wondering that’s the reason I was asked to leave Australia but it seems to me that this one of those industries with low barriers to entry and it has task that are labor intensive and to extent, there’s a sort of system– a systemised way of doing things. So I wonder if that’s one of the reasons why I fell in a lot of brewers to talk to in the podcast.

What I also like about Spotlight (another brewers I’ve spoken to), is that they all say that people are buying the product. They’re buying the beer, they’re not buying it because of who made it. And in my mind, that’s the true definition of a social enterprise. Ric and I are gonna discuss that but he also talks us through some of the practical issues around what Spotlight does and also the challenges he has faced along the way. You’ll also hear that when you listen to Ric that he’s managed to get to where many of us wanna get to– doing a job that he really loves.

DEBRA: Today I am talking to Ric Womersley from Spotlight Brewing. Welcome, Ric.

RIC: Thank you very much for having me.

DEBRA: Can you tell me first of all about yourself and then also about Spotlight Brewing?

RIC: My name is Ric. I’ve set up this social enterprise called Spotlight Brewing. I come from a background with working with people with learning disabilities. My parents set up a care home when I was about 4 or 5 years old. Ever since then I’ve been involved somehow with people with learning disabilities. Obviously, first job was working for my parents but also we’ve lived on site so I shared a home with you know these twelve people that lived with us. I’ve always been involved people with learning disabilities.

I got to the point where about I wanted to a separate project away from what my parents have done. I wanted to do something where… work is quite out in the state from where we are and there’s not that much for people with learning disabilities to do for the day in a lake farm. So, I came with a concept of trying to… a social enterprise which would pay for itself but would involve a few people with learning disabilities. I’m also quite keen on sort of meaningful activity. A lot of times, these guys and girls can end up doing activities that are bit blunt– you know sort of activities that, that said activities, I wanted to create something which are a bit more meaningful and then I thought, “Right, what can I do? I’ve got to say my life was into the beer, love home brewing. Why not set up a brewery?” And yeah, and then we ended up with Spotlight Brewing.

DEBRA: Okay, so how long has Spotlight been going?

RIC: It’s been going about a year and a half now. The idea is maybe sort of 3 years old and it took a while to get the project running. I know, I involved with the guys sort of we’d sit down and we’d create recipes, we’ve had them brew them on my home brewing equipment, sort of taste test, we’d go out and visit local bars with our bottles, see if they were interested in the beer, see if they were interested in the concept.

And that sort of process maybe took about a year, a year and a half. And then we had to build the brewery basically so we had some availability of some premises which were some old sort of farm building damages which we changed into the brewery. So, the 2 main brewers in the project, Kevin and Neil, were involved from the beginning. So they helped with brick laying, with painting, clearing out, cleaning and just turning this old farm building into a suitable premises for a brewery.

DEBRA: What would the biggest challenges then in setting it up? What would you say the biggest challenges were?

RIC: So many. The first one was finance. I was hoping to be able to get some sort of grant for doing what we’re doing but unfortunately, never managed to lay my hands on anything. I think the fact that we were working with alcohol seems to be a little bit of a hurdle for some of the organisations that can provide grants. So, finance was very hard. I ended up putting a lot of my own money into the project and also a business of my own.

It was a selection of many hurdles along the way and because I didn’t have the amount of money to finance brand new equipment which was the first plan, ended up getting hold of some secondhand equipment but that secondhand equipment had lots of problems so ended up having to get a new equipment to sort of budget together. Finally, ended up with some great brewery equipment and which is.. it is half secondhand but we’ve been able to customize it to our needs. So, in the long run, it’s turned out really well but back then, it was like “Oh no, another issue with this equipment”.

I’d say it’s challenging but it’s all part of the process was getting the two guys that are in the brewery up to a safe standard. Myself as well. I had done a few days work with different breweries, done a few coasters but didn’t have lots of experience in the brewery so the first few brews were quite intense I mean to concentrate on providing a service to the guys in the brewery making sure that they were safe, learning and enjoying their time while they were here. And also, try to create a great deal at the same time, so that was the first few brews are very tricky. But we soon sort of fell into the great. We soon fell into sort of working well together and a great routine. And as the brewery gone on with all the people learning which is what it’s all about then. The goals that we’ve got to social enterprise is to get people with learning disabilities to focus on their strengths and hopefully create somebody who’s employable in the future.

DEBRA: So, the two guys that you have working for you who had been with you from the beginning, they’re the brewers?

RIC: Yes, so we’ve got Kevin and Neil which I mentioned which they work in the brewery during the brewing. We’ve also got a chap called Matthew, he’s a very entrepreneurial guy. He’s our salesman and he sort of comes along to sort of farmers’ market and Christmas market and things like that; selling out bottled beers. Also, to look into customers and accounts that we have and sort of he work on that side of the business. We then have a chap whose got bit more severe learning disabilities but he’s a very sociable guy and he’s sort of like my assistant tradesman. He loves sitting and driving around, a perfect assistant tradesman. He’s great company but he’s also a real good laugh, so whenever we deliver, we can always have a laugh with people, have a laugh with the landlords, with customers. So, that’s everybody that we’ve got involved at the moment.

DEBRA: When you’re brewing the beer, what kind of processes do you have involved because you mentioned you’ve got your brewers so they’re obviously involved in the creation of the beer, do you automate the bottling and things like that?

RIC: Unfortunately not, no. We would absolutely love a nice bottling machine, but no, we’ve got a quite basic set up again due to costs but it does involve everyone. So we set up a nice production line with everybody with their own individual jobs on bottling day. So we’ve got one guy pre-rinsing the bottles, I run the little bottling plant that we’ve got then the full bottles go over to Neil who got say taps on the bottles, they then go to be checked for the volume of the beer in the bottle by Kevin who checks that and then put some away to dry in a box until we will spend sort of half a day bottling. I mean, it’s quite a slow process and we maybe due sort of 200-300 bottles in the morning and then we spend the afternoon after lunch labeling the bottles and dating them. It’s very hands on.
But it gets the guys involved; we’re doing tasks, learning new skills and we have a laugh as well, the music’s always on roll, we’re having a joke.

DEBRA: Your accounts, you mentioned, so you sell to pubs, go out and selling at various places, what are some of the accounts that you have and how have you got those?

RIC: Most of the customers are sort of smaller premises that focus on good quality beer. 90% of that beer goes within 30 miles of the brewery in cask and crate. So you know, the best way to go out and gain customers is go out and speak to the landlords which means taking a visit to a pub which isn’t too bad and that’s not how we’ve gained most of our core customers. Some does go out for field so during festival season, we get a lot of beer going all over the country to different festivals and then we just started a little bit of wholesale as well with beer sort of going all over the place with wholesale but yeah, most of it is in the local area.

DEBRA: I assume that when a landlord or a pub takes your beer, they’re most concerned about the actual beer rather than who made the beer.

RIC: Yeah, I mean, I try not to push too hard. I let people know what we’re about. I try and let the beer and the quality of our beer speak. I don’t want people to sort of chooses us as a charity case, if that makes sense. I’d rather a landlord buy a cask of our beer, it goes down well and then go, “Wow! Look at what they’re doing. This is amazing. The beer is good.”

So yeah, I mean, no matter what you do, you can’t tell it’s hard to sell a beer at price we’re asking but it’s good quality beer is important like a brewery our size and then I’m just hoping that social enterprise side is a little bit of a bonus for people. And also, helps educate as well. So, if you look at what we do, we’ve got a range of cold beers which are related to different learning disabilities and our goal apart from providing a meaningful activity at workplace with people with learning disabilities is to raise awareness. And so, each cold beer has that relationship that takes us session pale ale for instance it’s called One More and that’s related to people with Down Syndrome because they have one extra chromosome. On our bottles, we then got a paragraph sort of explaining some simple facts about Down Syndrome, got a little bit more information on our website. It’s just a chance for people at the end of the day to sitting down with one of our beers to be drinking it and have a little read and hope they’re learning something as well.

DEBRA: You’re a social enterprise, so when you make money, does it go back into the business? Do you pay your brewers?

RIC: The money is all gets reinvested into the business, nobody gets paid at the moment. It’s all on like a voluntary basis that’s including myself at the moment. There’s no money taken out as profit because we never got any grants or anything like that. It’s been sort of a quite organic growth that we’ve had and every penny we make then just straight back into the business to help grow it, get more equipment so we can keep up with the demands. And yeah, that’s sort of the stage our business that we’re at at the moment.

DEBRA: But I assume that long term your plan is to have more people involved and I would assume eventually pay people because it’s a social enterprise so it involves making money as well as providing you said activities but I’m assuming that you’d like to pay your brewers at some point.

RIC: Absolutely, yeah 100%! And also, our aim over the next year or two is to open up a couple of taprooms in the local area. This will help with the profit from a social enterprise but it will also provide new establishments for different people to get involved with. When we look at working with us is a certain individual, we look at their strengths and so, you know, the guys that work in the brewery and maybe not the most sociable by people but they’ve got great strengths; Kevin is fantastic at cleaning, Neil is really good at picking up practical spiels really quickly. And if we open up some taprooms, we can look at all their strengths that individuals may have to really help them play to their own strengths and involve more people. And if we can get a little more profit out of it, start paying a wage.

DEBRA: Let’s talk a little bit about what you plan for the future, so we’ve sort of covered that but can I just ask you if someone’s looking at doing something similar because you clearly taken this from sort of nothing and created something amazing, if someone else was around the country or overseas or wherever, because I know that… one of the reasons I’m talking to you is because there was an article about a number of different breweries around the world that were doing similar things to what you’re doing. But what advice would you give someone who’s in the situation when they think, “Actually I would like to do something similar for either my son or daughter or for a group of people I know” or you know, something like that. What kind of advice would you give them? Where would they start? And what are the things that you’ve learned that would help them?

RIC: Well I think, take the time to plan it out and really get it in your head how your project is going to work. If it’s for people with learning disabilities, get to know, make sure you fully know the people that you’re going to get involved in the projects because it’s very important that they’re happy in what they’re doing there and gotta figure out if everything’s gonna work together, where you look at their strengths and also prepare for their weaknesses. Maybe choose something with a little bit less health and safety issues in a brewery. That’s my take. A lot of investment has got into making the brewery as safe as possible than you know, there’s lots of processes within a brew day which really slow us down compared to another brewery because there’s sort of like there’s a dangerous section all about ethics, close off the section of the brewery whereabouts here no bringing this and that or anything like that. So yeah, think about what your project is, how appropriate is for the people that you’re wanting to help and how it can all fit together before diving straight in maybe a little bit like I did.

DEBRA: It’s interesting you’re talking about social enterprise, can I ask why you didn’t go down the charity route? Why you chose a social enterprise over a charity approach?

RIC: I did consider the charitable approach. When I was looking into it, I wanted it to be… the brewing industry at the moment is actually quite tough. There’s a lot of small breweries around, a lot of people who produce and brew brilliant products. And my concern with going to charitable route was extra red take and not be able to (with the business head on) make the charity work as a business and that was a sort of a challenge that I wanted the business to run on its own sort of two feet, if that’s making sense. I wanted to create something which isn’t asking from all over the place and I want a little business to run itself and involve the people that we work with. And that was sort of more my goals. I wanted an enterprise to solve the issue that I saw in the area.

DEBRA: Thank you very much for your time, Ric.

RIC: Pleasure. Thank you very much for taking the time to speak to us .

DEBRA: Key takeaway? If you have an idea that you think is worth starting, you should just go and do it. There are other people out there that will help you, there are other people out there like Ric that have done it before you. And no doubt would support you along the way.

Resources
Spotlight Brewing Website
Spotlight Brewing on Facebook
Spotlight Brewing on Twitter

Please subscribe to this podcast and if you have a story you would like to share I would love to hear from you just email debra@journeyskills.com

Please Review Us On iTunes

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Promoting Collaboration At Yoocan

Podcast Episode 70 We can sometimes feel that we are alone in our journey but often by simply looking around we realise we are not. The focus of this week’s podcast, Yoocan proves this in the way they provide an online space to share stories and to inspire each other. In this interview, Moshe Gaon co-founder of Yoocan explains why Yoocan exists and what its primary aims and objectives are.

Moshe also talks about how important collaboration is in advancing the way we do things and helping speed up the pace of change for young people with additional needs. He explains why we need to look outside what we know into other areas to find solutions that have been created for other reasons but help us to solve our own problems.

Moshe also talks about why Yoocan is a social enterprise, not a charity and why this is important in the long term not only for the success of Yoocan as a platform for collaboration but also why social enterprises are a better way to bring about real sustainable change.

The hint in the name really but actually Yoocan is about more than what each of us can do it is about understanding that you can do more when you look at what others have done before you or are doing beside you.

Show Full Transcript
Podcast Transcript
DEBRA: Welcome to Episode 70 of the Journey Skills podcast. I hope you’ve already heard of the organisation which is the focus of this episode, if not, then like me you’ve been missing out on some great resources and generally, just the website that offers so much in terms of ideas and inspiration. If I had to use two words to describe what I’m talking about with Moshe Gaon, the founder of Yoocan, it’s about connection and collaboration.

Over the last two years of doing this podcast, I’ve noticed an awful lot of replication of amazing ideas. To me, this seems such a waste because we need to be learning off each other. And this is not a criticism in any way at all. A full of admiration for everyone I’ve spoken to who is basically stopped talking about an idea and just got out and done it. But I do think that we need to realise that often the beginning of a solution is already out there for us. And we need to be tapping more into each other’s knowledge and experiences. This is only going to help all of us move forward quicker and help us get our young people to where they need to be quicker as well.

It’s a kind of hope that this is where the Journey Skills podcast fills a bit of a gap; making more people aware of the various projects out there and the various people that doing amazing things. And purely from a personal point of view, I’m starting to feel myself that I am so much better equipped to go out and help my daughter achieve the level of independence that she actually wants.

Moshe and I talk about a variety of issues including why there isn’t’ as much collaboration as they should be. We also talk about connection which is incredibly important as we navigate some pretty rocky roads at times. We also discuss this social enterprise idea and why charities can’t solve some of the issues and why we need to be talking more about enterprise and how doing that and having an enterprise changes perceptions, not just for ourselves, but for our young people and actually in the wider community as well.

DEBRA: Today, I’m talking to Moshe Gaon who is from Yoocan. Welcome, Moshe!

MOSHE: Hi, it’s my pleasure.

DEBRA: Can you tell me a little bit about yourself first of all and then what Yoocan is all about?

MOSHE: Sure. I’m a businessman, an entrepreneur and an investor in early stage companies. I’ve been involved in many, many areas in my lifetime working in advertising and marketing, working with innovative startups here in Israel and investing in numerous areas in industry, financial businesses. And about five years ago, I decided that there is a need out there to start a startup that will help people with disabilities solve two major problems in their lives: one is the frustration of search, looking for different things. They may not find where they are and the second thing is the loneliness; the feeling that people have, that they are all alone and when there is a problem that they’re trying to solve, they cannot find the right people to speak to so they feel alone and it doesn’t make a difference where they’re from in the world, it doesn’t make a difference what they have and it really depends you know if they have a child or it themselves.

Those two things; their frustration of search and the frustration of loneliness are equal around the world. So when I’ve learned this from personal experience from my family which I’ll tell you in a minute about, I decided that there’s a need to start this company that will solve these two major problems. That’s how I started with Yoocan.

DEBRA: Can you explain exactly what Yoocan is? I mean you said before it’s obviously a resource centre but what exactly is the purpose of Yoocan?

MOSHE: Okay, so once I explain the need, the need was to try and give this problem a solution. The idea was to develop a collaborative community; a place where people can actually share their stories, learn from other’s experiences and to put together a community that would bring in solutions from around the world to help one another. It could be solving people’s needs for empowerment, to believe in themselves and to believe that they can do things that’s why we called it Yoocan.

And the second thing was to find the resources to help them achieve these dreams of theirs, their goals. So it could be somebody wants to travel around the world, it could be somebody who wants to play music, it could be somebody who wants to dive or to surf, or it could be somebody who wants to learn about fashion or anything that you would like to do. And it starts from early age, from very young children who wanna do things and their parents wanna help them but they don’t know how to do it. And it goes into older adults who have this dream to do things and they wanna learn from others.

So if you go in Yoocan, it’s really a collaborative resource centre that allows people to learn from other’s experiences, to learn from their empowering stories and an access to solutions from around the world, it could be products, services, activities. That’s what Yoocan is about, that’s why we call it You Can Do Anything.

DERBA: So it’s obviously a business startup, so how did it get started? What did you actually do to get things moving? Because you need to market it, you need to get people involved, how have you done that?

MOSHE: Well, my vision was that the problem with a lot of projects that are starting the disability community is that people feel that it’s Philanthropy. This is something that you need to raise money from philanthropists and it’s not something that you could stand on its own and there is no real business model for it. So, usually, as you go along, you waste most of your time trying to raise money rather than actually build a business or build the solution.

So the idea was that we need to learn from other startups from other industries and build something that has the potential to be a business, something that can stand on its own, something that can actually earn money. So we are in what we call the For-Profit Business; a business which is an impact business, it’s designed to do good and is designed to solve people’s problems and to give them solutions but it’s really also designed to be a business that stands on its own and earns money that we can sustain the business as we go along.

So we’re not profitable yet, I mean we’re still building the business but from the beginning it was designed to be something with a business model and our business model is very simple; we provide free solutions to the community but we hope that eventually suppliers, sellers and people themselves will use the platform to buy things or to sell things. And by doing that, we are able to get a commission from the sales and that commission goes into helping the business sustain itself. So that’s the logic of it. The logic is that but the logic is that it will eventually be a business that will provide people solutions on one hand and on the other hand, by the fact that people find those solutions on Yoocan, we will be able to sell things like a marketplace, and from that commission, from those earnings that we will get, we will be able to build a business, increase the potential of it, build more services into it and sustain the business, rather than raise money from philanthropists.

DEBRA: Can we explore that a little bit more because it’s an issue the whole idea that people expect things like this to be a charity as opposed to being a business and that you have to justify that it is a business and not a charity because people think that people with disabilities need a charity to support them as opposed to a business. Is that something you’ve found as well?

MOSHE: Yeah well there are two problems that have to do with for-profit businesses. One is that the investors that are used to investing in startups which are in other industries, you know like crypto or into marketplaces or into internet businesses, they are used to investing in those businesses and they don’t ask questions about what’s the potential, what’s the risk because they’re more used to it, they are more familiar with these businesses and it’s much easier for them to make a decision on investing.

But when it comes to disabilities, it becomes completely different stories because people are used to the idea that when you’re talking disabilities, this is about Philanthropy, this is about not making money, this is about government’s investing. So why should you invest in these companies? And my vision to the world is that people with disabilities are a very big community around the world. They are buyers and they are people with buying power just like any other communities around the world. And they buy a lot of things just like anybody else buys. When you have a family with a disability, you know that there are much more needs. You usually buy things that others don’t really buy, maybe different things. So your buying power maybe bigger for those areas that are relevant for people with disabilities.

So I think that when you actually explore farther into the disability community, you find that many products that are sold for people with disabilities have a very big potential of selling around the world and becoming very good businesses. So, as we look around the world today, because of the innovation, making in 3D, in internet of things, in driverless cars, people are starting to understand that these are industries that have a lot of potential for products for people with disabilities in video, in smart homes. So, if you look at wheelchairs that are becoming more sophisticated, if you look at hearing aids these are becoming more sophisticated, vision aids becoming much smarter and many other areas as well. I think that we will see much more development, much more innovation in these areas. And people will start getting used to the idea that this is a very, very big business.

So, Yoocan is really an innovator in a sense that we still need to convince people that this is a business and we have invested a lot of money into building Yoocan from private investors, myself included. We’ve put a lot of money into building it because we believe that this is something that we invest in something that has a credibility of becoming a business and not just being a business on its own but also being a promoter of other businesses and allowing other businesses, other innovations, other startups to present themselves on Yoocan.

So, if you go on Yoocan, you will see a lot of innovation, you will see a lot of companies, you will see a lot of startups, you will see a lot of technology that we are actually allowing others to present themselves for free. So I hope that eventually, we will be a place where everybody that is involved in disability will appear, will be taking part in and will collaborate with us.

DEBRA: You mentioned before about taking note of what other startups have done in other industries, do you think that’s a bit of an issue when  a lot of organisations seem to go from the very beginning rather than finding out from others so it seems that Yoocan would have a good thing with collaboration of businesses learning from each other even if they’re not doing exactly the same thing.

MOSHE: It’s a very good point because I think that there are a number of problems in what I would call the disability community but also in the Philanthropy area as well; that people are raising a lot of money for many, many things that are duplicated efforts. And if you look at what people are doing, there are so many people who are doing the right things and from the right place in the heart but these are duplication of efforts. They do the exactly the same things that others are doing maybe in their own neighbourhood or definitely in their own country.

So I think that there is a lot of room and a lot of potential for collaboration. We’re doing things together because I think that could also save money but also can save time and efforts because there are many, many things that you may think that you’re doing innovative but somebody else has done it already or somebody else is already has the database or the marketing effort or the knowledge for something that you think you’re starting from the scratch and you need to build up.

So I think that Yoocan is also about telling people that we don’t have to do everything from scratch, we can actually collaborate and the more we collaborate together, the more the efforts will be effective. You can save money, you can build businesses together, you can build marketing efforts together, you can provide services together.

I’ll give an example you know I find people that are working on developing a product because they may have a child with a spinal cord injury and they want to help them surf. But if you go on Yoocan, you will find maybe ten companies around the world already developing surfing boards and you can actually find many, many surfing boards for people with spinal cord injuries already on Amazon and many of them are actually available around the world. So why would you go investing money now in developing something from scratch if you can actually go on Yoocan and find the solution and just order it and get it in two weeks’ time? Instead of working out three months to develop it. That’s just one example.

It goes to music product, it goes into fashion products, it goes into medicine, it goes into wheelchairs. In many industries, I find that people are trying to develop something from scratch where this product exists somewhere else in the world. And when I go around the world talking to people and they come to me and say, “Moshe, do you know of a vision product that can help my child that has this problem?” and I say, “Sure, there’s this company in Israel. We’ve developed this product, why don’t you just you go on Yoocan and talk to these guys.”

So, I think that it’s amazing that it wasn’t done before and nobody has actually done it and it’s also amazing that Yoocan is trying to do it with very limited efforts because we only raised a million half dollars for Yoocan and it’s not too much and we’re not doing it every year in raising funding efforts and celebrations. We believe that we need to be very effective. But I think that we’ve actually achieved so far is pretty amazing compared to the limited time we’ve been around and the money that we’ve invested in it.

And I think that if we get more companies to collaborate with us and we get more partners to work with us and we get more organisations around the world to help us, I think we can actually build the world’s largest resource centre and collaborative community to benefit everybody and the good thing about it is that it’s provided for free to the people. So that people have to pay for it, they’re getting it for free. The only thing we need to do is to get people more awareness to know about us, to share their stories on Yoocan, to look for things on Yoocan and even maybe to buy through Yoocan so we can actually make some commission on it and build a business for them.

DEBRA: I just want to explore that a little bit more the whole idea that we end up doing things from scratch so do you think it’s because people just genuinely think there’s nothing out there so I’m going to  do it all myself?

MOSHE: It’s that as well, yes, I think that many people think that they’re smarter than others so they want to try it on their own. That’s definitely one of them. They think that they know better and they will do it differently. And people don’t understand that it really takes a long time to learn how to do things and it takes a lot of money to build things right so one of the frustrating things that I learned is that many people try and then that after a while they fail and then their efforts go into the garbage and it’s a waste. And I think that many people need to say to themselves, “Before I start something, maybe I should look around and see what’s out there and maybe we can do together rather than start from scratch.”

The second thing is that I think that people think that their needs are different than others and what people do in one place is not similar to what they want which in many cases is not the right thing. I mean, in many cases, they think they’re different but they’re not because what we find is that the problems that may be in one disability may not be solved by the same disability maybe but from another disability that you could find a solution for it.

For example, if somebody doesn’t have a leg because of a disease, I don’t know if its diabetes or an accident, the solution for its problem may come from another disease that created the solution for somebody that lost their leg because of that disease. If you understand what I’m saying. Because the problem was that the person has one leg, it’s nothing because he has diabetes. So what you need to do is to look for what is the problem that somebody is trying to solve; is he trying to ride a bike, he is trying to surf, is he trying to jump from an airplane. What is the problem he is trying to solve, what is he trying to do rather than what disease he has. And my brother’s son, Erez, who is the inspiration for Yoocan, was born 11 years ago with a very, very unique disease. He has multiple disabilities but is still is a very, very sweet kid, he’s smart, he knows how to do many, many things and he likes to do many, many different things but his disability which is multiple limits the way he can move around. So, if we needed to solve his problem, we may find that solution in a disease which is completely different than his because his disease gives him limitation in movement. So, he could actually have a solution riding a bike that comes from a disability which is completely different which is also about movement disability. If you understand what I’m trying to say.

So I think we need to be very, very creative in the way we approach this rather than say, “Oh my kid has this disability I must find him a solution.” Rather than say, “I’ll look around and see other kids who have a movement disability from different disciplines, from different disabilities and see what they’re actually doing and maybe I’ll find a solution which is better for my child.”

DEBRA: Do you think that that’s partly because we have labels and those labels are quite rigid so a person might have autism and that’s what they have?

MOSHE: Yeah, it comes from these structures of how Philanthropy was actually created is that you have a charity that’s about autistic children so the only focus on autistic children and if you have a charity about spinal cord injuries, that is about that. So each one of them is focused and very, very nervous about protecting its investors or its philanthropists and not sharing knowledge and not sharing services, and not sharing databases. And I think that we need to break that, we need to get everybody together to say, “Here’s what we’re doing, here’s what we’re doing great, here’s what we learned that doesn’t work and doesn’t work for us. Once we share that information with one another, I think we can actually build a bigger community. And it’s amazing because disability around the world is about 25% in every population, almost in every country and it’s a huge power community. I mean, there’s a lot of people, a lot of families, it’s every 5th family disability catches on. And still, if you look at its impact on governments, it’s leverage on companies. It’s very limited.

And I think that companies talk about doing things but compared to what they can do is very minimal; corporations are not investing enough money in this community, they’re not investing enough money and find solutions for this community and these are billion dollar companies. We’re doing very, very little compared to what they can do. So I think it’s all because everybody talks about it– collaborations but there’s very little collaboration and I think that what I see the vision for Yoocan is, to be at the head front of telling people what collaboration is about and if you go in to Yoocan, you will see how many companies and how many organizations are already collaborating on Yoocan. We have now more than 1000 organisations on Yoocan. We’re collaborating with many organisations from around the world, you know, UK to Australia to the US to Israel to Germany to every country around the world almost. We have 105 countries participating. We have storytellers, almost 2000 storytellers now on Yoocan from around the world– sharing their stories from every country in the world regardless if these countries talk to one another, the people talk to one another which is pretty amazing.

And I think is what the vision is about. So I think that if we start collaboration, if we break down barriers, if we share information and knowledge, if we allow people to share their stories with one another, if people create awareness for Yoocan, I think it can really change the way people are actually behaving and sharing knowledge and that will solve people’s problem around the world.

DEBRA: Thank you so much for your time.

MOSHE: Great, I appreciate it and share Yoocan story!

DEBRA: Key takeaway? Well I don’t need to reinvent the wheel to solve some of the issues that I’m looking at solving for my daughter. There are already people out there doing some amazing stuff and I need to go and talk to them and learn from them.

Resources
Yoocan website
Yoocan on Facebook

Please subscribe to this podcast and if you have a story you would like to share I would love to hear from you just email debra@journeyskills.com

Please Review Us On iTunes

If you liked this podcast and would like to help us, please do the 1, 2, 3:
(1) Click Review on iTunes (2) Click ‘View in Itunes’; and (3) Click on ‘Ratings and Reviews’ (just to the right of ‘Details’) and leave a review.

Seeing Below The Surface

Podcast Episode 69 Accepting ourselves by embracing our strengths and understanding our weaknesses is key to our own happiness. How to do this is the theme of this episode with Alis Rowe founder of The Curly Hair Project.

Alis talks about her own journey from when she was diagnosed in her early twenties with Asperger syndrome. She explains why she created The Curly Hair Project, what is does, and how it aims to help people on the autism spectrum and their families. Alis also shares some practical ideas that she has implemented to enable her to navigate difficult situations and live the life she wants. Some of the ideas are simple, and could apply to any young person with additional needs, but they make a massive day to day difference to someone’s life once they start using them.

Alis also advocates the importance of putting yourself first and making decisions around what is best for you, not others. She acknowledges this won’t always be the easiest option because it requires you to sometimes be very honest with those around you and often with yourself.

Finally, Alis reminds us to be ourselves because, as she says, “Where the magic happens in life is where you embrace the natural strengths and interests that a person has.” We could all do with a little more magic in our lives and listening to Alis should serve as a reminder to all of us that we are so much more than what the world sees on the surface.

Show Full Transcript
Podcast Transcript
DEBRA: Welcome to Episode 69 of the Journey Skills podcast. Although my focus is often around talking to people who provide solutions or resources in three areas that Journey Skills focuses on which is work, relationships, and daily living, the other part of Journey Skills is very much about sharing stories. When I started these were mainly from parents’ point of view because you always start with what you know, but recently, I’ve been really fortunate to be able to speak to people who have additional needs and see these as an asset and something that they can work with, and that’s a positive message that I definitely want to share with my own daughter.

As a parent, I find this actually as much of a help as finding yet another amazing employer or volunteer organization really helping to change the lives of people because I hope that one day, my daughter will come to see her additional need as an asset and part of what makes her an amazing human being.

So this week, I’m talking to Alis Rowe, the founder of the Curly Hair Project. I’ll let Alis tell her own story but for me personally, this was about talking to someone who shares her story to inspire other people and talking to someone who’s living the kind of life we all want, regardless of any needs; a life of purpose.

The other thing I got from our discussion was the value of tools and sometimes how it’s the very simple things like a To-do list that can really help a young person manage their lives. So Alis shares some very practical solutions as well, but really why this podcast is worth a listen I believe is to hear Alis talk about how to get rid of the things that don’t matter in life.

So the podcast isn’t just a story but it also offers proven solutions that have worked for her and may work for your young person. This is a podcast I’ll ask my daughter to listen to because I think it will resonate with her and I hope it will resonate with you as well.

DEBRA: Today I am talking to Alis Rowe from the Curly Hair Project. Welcome, Alis.

ALIS: Thank you very much.

DEBRA: Can you tell me a little bit about the Curly Hair Project and how it got started?

ALIS: So the Curly Hair Project is a social enterprise that supports people on the autistic spectrum, their families and professionals; so teachers and doctors and anyone working with autistic people. I started it just after I was diagnosed with Asperger’s syndrome in my early 20s because I couldn’t really find many resources in particular for adult women so I created my own. And it was sort of like a way to teach myself about autism but it happened to teach a lot of other people as well. It just grew from there really. So, I’ve written a lot of books; my autobiography is really, really popular. And I’ve written about 25 books and make films and now I’m making rap songs. And it’s just really grown over the last few years.

DEBRA: What’s the main purpose of the Curly Hair Project?

ALIS: Just to educate people, really. I think a lot less now that it’s directly for autistic people, everyone tells me that my work can benefit everyone. It can just make you a more insightful and empathetic person and I really focus on equipping people with practical strategies that can actually change your life and make your life easier. And it’s also to educate people that not everyone sees things in the same way, that someone who appears very shy and unsociable on the surface, might be having some quite severe challenges underneath.

DEBRA: Can we talk a little bit about some specific issues that young adults might have on the spectrum or otherwise (as you said it can apply to other people not necessary people who have autism) things like prioritizing tasks and managing deadlines, have you got some tactics that you could suggest that might help people to manage those issues?

ALIS: So autistic people in particular might have difficulties with this because these skills are all to do with executive functions which is the area in our brain that’s responsible for things like planning, memory, prioritizing, and not getting distracted on regulating our emotions but I think a lot of people have problems with those things anyway. So I think we can all learn to get better at prioritizing and meeting deadlines.

So prioritizing tasks can be difficult because a person may struggle to recognize what’s important, for example, an autistic person might just think that everything’s important otherwise why would they be doing it. So, I think it’s really important to help someone recognize what important means and to determine the value of things because that will help you know what to do first.

Managing deadlines can be really hard because a person might have a bad sense of time. They might not realize how long something is going to take. Sometimes I have a problem where I might have a lot of tasks, for example when I was at university and I just kind of had the assumption that every task was going to take the same amount of time when if I had just maybe taken five minutes at the start of every week and seriously looked at each task and properly considered how long it was going to take, how difficult it was, I think that would have been a really good tip for me to use and for anyone to carry on with.

I’ve also read about something called The Urgency Important Matrix which was created by an American president. So, it’s all about working out which tasks are most important to do based on how important they are and how urgent they are and getting rid of things that are not urgent and not important. So, I find that really useful as well. I also really like to do tasks that are really quick done straight away because it gets some completed straight away and that can be really empowering and freeing.

One thing that was really important and helpful to me with regards to learning to prioritize was actually deciding in my life what was important to me because it’s really difficult to prioritize things if you have to do so many different things every day and your diary is really full. And one of the reasons my diary was always full is because I was doing too many things to please other people or I was doing things that I thought I should be doing rather than things that I actually wanted to do.

For example, spending a lot of time with friends or trying to make new friends when inside I knew that really wasn’t me and I needed a lot more alone time. So, as soon as I started thinking about what was seriously important to me, it really helped me sort of declutter my life and then I had a lot less to do each day. So that was really important. It’s okay to use some hours for other people sometimes but we should always remember that it’s our own needs that come first and if we’re not looking after our own needs, then we can’t really help or support other people either.

Another strategy that I always have when I prioritize is thinking about what’s the worst that will happen if I don’t do something and if the consequence is really bad then that’s an obvious sign that I should do something straight away. Another good way to prioritize or think about what’s important as well so if not doing a task will hold up other tasks for other people, that’s another way to make sure you know what to focus on. I think that’s really helpful as well.

DEBRA: Another area that you provide resources on your website is around diet and exercise and a lot of people struggle with finding the balance between diet and exercise and how to stay healthy, you got any tips that you could suggest to help people in that area?

ALIS: I totally relate to that. I think a lot of people over-complicate nutrition and being healthy. I think eating properly is really important for mental health. A lot of people can have quite bad moods and they don’t sleep well and they get distracted a lot. And a lot of that can be attributed to them not getting enough exercise or having a bad diet and they don’t always realize that. So, I think eating well is really important.

I really just focus on eating the five food groups in moderation and making sure I get enough protein (I’m a weightlifter so eating a lot of protein is really important) and healthy fats because they’re really good at helping you to concentrate. And I eat a lot of vegetables as well. But I don’t really think it should be more complicated than that because life is so complicated already, so I think that’s fine, and obviously, I eat sweet things as well.

DEBRA: As you’re a weight lifter what are the benefits of sports do you think?

ALIS: The benefit is obviously the physical benefits and depending on what’s you do, there’s also a really strong social benefit as well because it can be a means of making friends and socializing but there are other benefits as well that people might not necessarily realize because sports by its nature is very technical and in order to get better at it, you have to actually dedicate to do it on a regular basis. So, it teaches you a good work ethic really of being disciplined and practicing and being persistent  and they’re really, really important skills that transfer to other aspects of your life.

DEBRA: One of the things that you talk about is not expecting the world to change to fit around someone who has autism. People adapting in working together and understanding each other, and that’s sort of big area, isn’t it in general when it comes to additional needs, and the whole idea of how much do you have to adapt. Do you think that there have been changes in terms of people accepting differences? You mentioned very early about people becoming more aware, but do you think there’s more understanding or acceptance?

ALIS: Definitely. When I think back to when I was at school like twenty years ago or even ten years ago when I was at university, even in that time, I don’t really think anyone really knew the word autism, let alone knew what to do with it. So I think so much has changed in the last five years really. I hear a lot of stories now about families with children and their children get all the right support and I think autism is a very open subject now and no one would really be surprised if you talk about or said that you had it because it’s quite widespread now, that knowledge which is excellent. And in turn, I think that has made people more empathetic of people who are different which is really important.

I think that where the magic happens in life is where you embrace the natural strength and interest that a person has so that they can end up sharing their true talents with the world, I think that’s really important which is why I love what I do now because I think I love writing and it’s what I was made to do. So, being able to do it has been amazing. So I think nurturing someone so that they can use their differences, their uniqueness in a positive way is really important rather than trying to change them or make them more mainstream for example.

DEBRA: Do you think there are still stereotypes around autism and what people are like when they have autism and people make assumptions?

ALIS: Yes, I do. I think the worst assumption that kind of affects me is some people think, they assume that I won’t want to do some things so they won’t even bother inviting me out or something. Of course, they think, ‘Oh, she’s autistic, she might not want to do that or be too much for her’. Someone actually said they deliberately didn’t invite me because they thought it would be too much for me. I know they were well-meaning but I didn’t like that assumption. I would much prefer to be asked, you know what I mean?

DEBRA: Yes there’s a saying “If you’ve met one person with autism, you’ve met one person with autism.” and not everybody. That’s the reason I asked because I just wanted whether or not you thought that there are still assumptions.

ALIS: That’s another good point as well. I think, as you say, we should always remember that everyone is different and I think sometimes an assumption that autistic people are very quite and introverted and always want to be on their own (and even I thought that as well). It was only very recently that I realized that a lot of them are not like that, they’re actually very extroverted and chatty and they want friends, they just maybe don’t have the social skills to be able to do that. So I think that’s really important to make people aware of as well. And it’s sort of fascinates me how autism is so diverse in that way but it is!

DEBRA: It’s sort of as you say there’s so many different assumptions about people that are not necessarily true because as you say, someone would think that maybe someone with autism doesn’t want to go out and do things when in fact, they could be very sociable. And someone else would be the opposite and go ‘Actually I don’t want to do that’ and you don’t have to have autism to not wanto to go out all the time with other people either.

ALIS: I always think that we should remember that everyone has their own personality as well and is a human being at the end of the day.

DEBRA: I suppose someone gets a diagnosis then that’s when assumptions get made because if you are diagnosed with a particular additional need then everything that goes with that maybe takes away from your personality and makes you someone who has, for example, autism.

ALIS: I definitely agree with that and I think that’s one of the drawbacks of having a diagnosis and the decision to tell people that you have ASD is one to think about really because unfortunately, a lot of people will also change their behavior and their thinking about you as well once you have a diagnosis in a way you don’t want them to as well. So, that can be really hard.

DEBRA: Just finally then, can we talk a little bit about the resources that you have available and the kind of things that you do, you mentioned you did rap songs and things like that, but what else do you have available for people and where can they go to find them?

ALIS: If you go to our website thegirlwiththecurlyhair.co.uk, you’ll find all the resources there. So, as I said, I’m primarily an author that’s what I love to do and I have a lot of books and they’re all really well-reviewed and endorsed by the leading psychologist, Professor Tony Attwood. In the last couple of years, I’ve also started making animated short films and that’s been very exciting; all based on the character, the girl with the curly hair and how she interacts with the world around her. So, we have little series like A Day at Primary School for the Girl with the Curly Hair all the way going up to A Day at Work with the Girl with a Curly Hair.

And we do training as well around the UK, so we do courses and again, they’re all to do with autism but I think a lot of people can benefit from it as well and we’re just sort of going into unconscious bias and empathy training as well. And we do webinars so you can access our training from your home, your computer, or your mobile at home if you don’t live near to our training courses. As I said, I’ve just started making rap songs as well, so that’s awesome.

DEBRA: Is that just something that you decided you wanted to do and tried?

ALIS: When I was a teenager, I was really into rap music and I used to study lyrics for hours every day and I used to rap to my favorite songs and I sort of got out of it as I started working but I had an opportunity last year to make a theme song for The Curly Hair Project so that kind of set me off again and now I’m working on an album. So that’s very exciting. And I think it’s a really cool way to get the message across as well about autism because a few of the songs are about autism.

DEBRA: Yeah, people accept information in different ways, don’t they? So someone might find that an easier way to get the information than some other way.

ALIS: Yeah, definitely.

DEBRA: That’s a really good idea. So, just very quickly, so the plans for the future, rap album, more books?

ALIS: Can’t really think of any more books that I need to write. I kind of covered most of the topics for the time being but I always say that and then within a few months, I write something else because I can’t stop myself but yeah, definitely songs and I really want to make of each a length film as well. That’s my aim for the future.

DEBRA: About the Curly Hair Girl type thing?

ALIS: Yes, a proper like 60-72 animated films.

DEBRA: Alis, thank you so much for talking to me. I really appreciate. The website is amazing and obviously, I’ll put links to everything. Thank you very much for your time.

ALIS: Thank you so much.

DEBRA: Key takeaways? Well, this week I’m going to take a quote from Alis, “Where the magic happens in life is where you embrace the natural strengths and interests that the person has”. I couldn’t have said it better myself.

Resources
The Girl With The Curly Hair website
The Girl With The Curly Hair on Facebook

Please subscribe to this podcast and if you have a story you would like to share I would love to hear from you just email debra@journeyskills.com

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Stay Up Late

Podcast Episode 68 One of the best things about becoming an adult is that no one can tell you what to do, when to do it and what time to be home. However, that’s not always the case for young people with additional needs. Often they still have rules in place that don’t apply to their peers. Stay Up Late is all about changing that and making it easy for anyone to stay up late, stay out late and enjoy the social lives they want on their terms.

Paul Richards the founder of Stay Up Late explains where the idea came from when he saw first-hand what happens when people are not able to have choose how they spend their evenings.Kate Ogden the manager of Gig Buddies which buddies people up so they can go to gigs in a safe and supportive way discusses how gig buddies works, how they make sure people are safe and how they are expanding the model around the world though a franchise model.

Stay Up Late is such a simple idea but one that does so much more than what it says it does, it promotes integration, acceptance and provides people with additional needs a solid base upon which they can start to build a social life of their choice.

Show Full Transcript
Podcast Transcript
DEBRA: Welcome to Episode 68 of the Journey Skills podcast. Often these podcast interviews are about serious issues, not this one. Well, there are some serious parts but essentially this is all about having fun. This is all about how we can help our young people with additional needs have more fun and do what their friends do, which is stay up late.I’m talking to Paul Richards, the founder of Stay Up Late and Kate Ogden, manager of Gig Buddies. And as you hear, it was a pretty fun interview because there’s some great stories in here. And it should be fun because this is all about our young people getting out and enjoying themselves.

What is Stay Up Late? Well, it doesn’t need that much explaining. They’re an organisation that support people through the Gig Buddies program to access a variety of social activities that most people take for granted. It enables people to widen their taste of music, enables people to develop their social skills and it enables people to refine their social scripts.

It’s also about integration for the person who has additional needs, for the buddies that they go to the gigs with, and in fact, as Paul and Kate explained, for everyone that’s actually in that venue. And that if you like as the serious part of our chat where Paul talks about why he believes that we should be focused on integration, not segregation when it comes to how young people with additional needs enjoy their social lives. They do say music brings people together and in a sense, that’s what Stay Up Late is doing.

DEBRA: Today I am talking to Paul Richards who’s the Director of Stay Up Late and Kate Ogden who is the project manager of Gig Buddies. Welcome.

BOTH: Hello.

DEBRA: So, Paul can you tell me a little bit about Stay Up Late, how it got started?

PAUL: Stay Up Late got started when I was the bass player in a punk band and three of the members of the band have learning disabilities. We were called Heavy Load and we started in the mid nineties. We used to play a lot of disability club nights, up and down the country and at nine o’clock, often before we even got on stage, half the audience would leave and that wasn’t because of our highly chaotic performances (which were an acquired taste it must be said). We always thought it was to do with the fundamental problem with the way that social care was organized and people couldn’t stay up late and we were right. That was what was going on.

So, what happened was in the early 2000s, a film company got in touch with us and followed us around for a couple of years, made a film about us. And one of the stories in the films was about how we were getting more and more fed up with seeing people leaving nights out early just because support was inflexible. And so that was a story in the film and the film came out, it was on the BBC, it was in cinemas, it was on TV in the US, International Film Festivals and so we got out this to a wide audience of people who all agreed with what we were calling for. Because the issue isn’t about how late you stay up late, it’s about having a choice over how you live your life.

So the band ceased to exist in 2012 after 15 years of anarchy and mayhem. Our last gig was in Trafalgar Square, as part of the Paralympics and not a bad way to bow out So we created the charity because I knew the band couldn’t carry on forever and I felt like we’d started a really important conversation and to me, it felt irresponsible to just stop things.I wanted to be a part of trying to do something about it and literally the week after our last gig, I got a letter from the City Council in Brighton and Hove saying that we got funding approved to start our Gig Buddies Project and that led to us employing Kate and the team of people who now support the work.

We do two main things, one is campaigning against inflexible systems that restrict people from living the lives that they want and the sort of institutional practices that happen where adults are told what time to go to bed, when to go out, what to do, go out in groups. Then the other thing is Gig Buddies being our sort of practical response to it by also saying people with learning disabilities have every right and probably want to do all of the things that lots of other people regularly do anyway; going out and seeing great music, going to clubs, going to pubs, doing those sort of mainstream stuff in a non-segregated way and that’s what Gig Buddies does.

DEBRA: Gig Buddies how does it work?

KATE: So, Gig Buddies matches volunteer with somebody with a learning disability to go to gigs together once or twice a month. We match people usually based on a shared interest in music, but occasionally it’s other hobbies as well. The main thing is that they’re both choosing to do something that they enjoy together and it’s fun for both people.

The idea being there is if there’s somebody with a learning disability who wants to go out late, go clubbing, it’s not the barrier of a staff member saying “I have to finish at this time”, the volunteer will say “I’m up for that and we will stay as late as you want to”. So that’s a simple answer to how Gig Buddies works.

DEBRA: How do you find the volunteers?

KATE: Lots of different ways but often it’s word of mouth. So, if somebody’s volunteering for us and they tell their friends, they say that it’s a great, fun thing to do, it’s an easy way to volunteer and lots of people do it because they know someone who has done it. We also have quite a lot of volunteers that understand the barriers because they might have a sibling with a learning disability or they’ve grown up with relatives with learning disabilities so they believe in this social campaigning side of things and they want to help. Sometimes people see a poster at a gig. There are lots of different ways. Social media is a really important way for us to recruit people.

PAUL: We’ve got a couple of people who run venues as well, haven’t we?

KATE: Yeah, that’s true. So people that have seen Gig Buddies come into their venue and so thye promote us tand join as volunteers as well.

DEBRA: So you mentioned a little bit about social care, do most people come through that system so they’re not necessarily living with their parents?

KATE: It’s mixed, actually. Most people are living in supported homes but we also have people that are still living at home with their parents and their parents will refer their son or daughter who’s over 18 as well.

DEBRA: When volunteers get together with the young person with additional needs, is it just about going to a gig or do friendships develop outside that?

KATE: It’s not just about the one-to-one relationship although its really key they build up a good rapport together and have fun going out. But with the volunteers, we ask them to help their gig buddy to make friends outside of that one-to-one relationship. Partly because there’s no guarantee that the volunteer will stick around long-term. We ask for volunteers to be a buddy for at least a year. We’ve got some amazing pairs of gig buddies that are still together five years after they started. But obviously, life changes people move or they have different life commitments and if the volunteer leaves, we found it’s much more successful if their buddies are part of the wider community through going to gig buddies’ socials or making friends with other gig buddies. So the way that we do that is we have monthly socials in different towns across Sussex. We encourage the volunteers to bring their gig buddies to these in the hope that they’ll eventually come to those independently, make other friends and be able to go out not just not with their gig buddy but with other people who are part of our project.

DEBRA: Is it about developing social skills transitioning from having that one gig buddy into making your own friends, going out with other people, not necessarily your gig buddy.

PAUL: Yes, being confident about going into new places and chatting with people. I always say if you went into a busy pub in the UK and you had come from another country, never been here before, you would sit down at a table and you would be there for about two and a half hours thinking the table service in this place is awful. There are no written rules about how any of this stuff works and I think a lot of people with learning disabilities, they don’t know always what the rules are about; how you go in and queue up and try and attract someone’s attention, make eye contact. All of those little nuances about just what goes on in our communities.

So it’s about equipping people with those skills by enabling them to go out with somebody else who does know how it works and they can navigate it together and learn. Whilst it’s called Gig Buddies, like Kate said, it’s not about gigs at all, it’s that shared interests, it’s the hook on which to hopefully support people to do much wider things, both within the project and without it.

And I think, there are lots of nights for people with learning disabilities and they’re really well-intentioned and well-meaning and many of them are great but if you love hardcore punk or drum and bass, are you going to get that, is there going to be booze (alcohol) there and are there going to be other people without disabilities there? Those kinds of nights are a well-meaning, well-intentioned form of segregation but with support and planning, people can go out and go out clubbing and go to music festivals and these things aren’t as dangerous as people make out if you prepare and plan for it.

And then it’s about people saying “What do you want to do with your life?” and try to enable that to happen rather than telling somebody while you have a learning disability, therefore, you must go to this disco, this is for you.

The more I think about that sort of thing is that perhaps we need to communicate and educate in the wider community of a message which is a bit more around, get over yourself a bit, be more accepting and understand that if somebody makes a loud noise in the supermarket then they can’t help that, that’s just how they are.

DEBRA: Have you had examples of where you’re seeing people change their opinions in the wider community?

KATE: One of the things that have come out of the Gig Buddies project particularly in Brighton and Hove is venues changing the way that they approach customers with disabilities. So for example, we had a pair of gig buddies at one of the big venues in Brighton, watching a pop gig, it was loud, there was dancing downstairs, people were stood up and taking photos. And one of the gig buddies in the upstair seats stood up to have a dance and take a photo and was asked by the steward to  sit down and stop taking photos. A member of the public saw the volunteer in the Gig Buddies t-shirt and complained and said, “Why was that man asked to sit down? There was no signs up saying you’re not allowed to take photos, you’re not allowed to dance. It’s a pop concert.”

And the venue got back in touch with us and apologized and said, “What can we do to be more inclusive?” So, it ended up being a bit of work with them about training their staff and making it clearer to people. So, is there an area that people can sit? But if they want to stand, they can or if they want to take photos and dance, they can. It’s just making it clearer to people because if there’s no explanation people don’t know what the rules are.

PAUL: These rules that aren’t always written down, or if they are written down they’re not very accessible.

DEBRA: Can we talk about the all-important funding and how that works?

PAUL: At the moment we’re funded solely really through grants and also we get some funding from Brighton and Hove City Council and West Sussex County Council, and then a few small grants and donations from trusts. It’s an ongoing hamster wheel kind of situation of keep applying for funding and we’re looking at new ways at the moment of trying to broaden that out and see if there are any companies and people that would buy into what we’re doing and help us out.

I guess it’s a fairly young and small charity. We can’t compete with some of the massive charities but we work hard at it. And at the moment, we’re doing okay. We employ 13 people, many of those are part-time but 5 have a learning disability as well. So, we really try to use that money in a way that is living out, what our vision is of how the world should be.

Another smaller project that we do is a team of people with learning disabilities does quality reviews for a local support provider. They used to do those in-house but now, we run it for them. What we’ve found in doing that sort of work is the quality of answers that you get back from people when a question is asked by a peer is completely different if the support work or managers were to ask that question. It’s completely different. It has so much more value to it because of that.

DEBRA: I want to ask is how someone might replicate this, but one of the issues that I think that parents would have, is the security risk when you have volunteers and you have young people who are sometimes a bit more vulnerable. How do you guys manage that?

KATE: So, we actually started Gig Buddies in a box, which is a franchise so other people have started gig buddies around the country and actually in Australia as well. We’ve got Gig Buddies Sydney which was the first pilot project. And that all came out of Paul talking at a disability conference and a woman who works for a disability organisation in Australia thinking “I want to do that”. And I guess, similar to your question really, we want to make sure that the ethos and the values are kept the same and that we don’t lose the quality of what we’re trying to achieve. We’d much rather that we consult people and train them properly to be able to start it. So, we charge a license fee for other people to use the Gig Buddies trademark. But it’s not something we ever expected to do because it’s such a simple idea who I thought “Well, other people must be doing this.” It’s kind of an obvious solution to the problem but maybe it was called different things, but actually, we found out no one else was doing something quite like this.

When we offer it to other organisations to run Gig Buddies in their town or their area, we try and go through all the things like how to do it, risk assessment for individuals that’s kind of dynamic, and making sure that volunteers are DBS checked, we get references from people, we train all the volunteers, ourselves. So we interview them and it’s a kind of a long process to make sure we get the right people.

And that seems to work really well so far. We got hundreds of pairs of Gig Buddies going out in Sussex and then we’ve got 12 other Gig Buddies organizations around the UK and another one about to start in Scotland. So, it seems to be working quite well.

PAUL: We insist that it’s part of the volunteer training, that safeguarding is covered. And also, actually, what our experience shows is the process of safeguarding does more. We originally thought it’s to protect people when they’re going out, so they’re going out to a late night club and it’s led to people drinking and stuff like that, that could be a potentially hazardous situation. So it’s about making sure that people are equipped with emergency phone numbers and have thought about what issues might be.

But what we’ve also found is that it keeps people safer because we’ve had volunteers come back and say, “I’m worried about my buddy, they’ve been getting weird texts” “I didn’t like the way the support workers spoke to when they got home” and things like that. It’s enabled us to go back either to that setting or even to social services and flag up issues. So it’s actually created another layer of safety in people’s lives rather than put them at more risks. I do think Kate, you’re a bit of an expert at planning for risks, we’ve done 7 Glastonbury festivals now, and we’ve still not lost anyone. (laughs)

Glastonbury it’s colossal and there is so much that could go wrong but you can’t plan for every eventuality. It’s about having that mindset of make this happen and let’s think about how we can make sure that this is a great experience for someone. Because it would be very easy to just turn it round the other way around and say, “There are lots of things that could go wrong so let’s not do it.” You know and I think that generally seems to be the default situation sadly for a lot of people.

DEBRA: I would suspect that’s the first thing parents go is “I’m not sure that will be safe for them to do that”, so that must be a little bit of a barrier that comes when young people approach you.

KATE: Occasionally but actually most of the time, parents are really keen for their grownup child, their son or daughter to be part of Gig Buddies. Lots of parents are really keen to see their young person go out and have fun and experience all the things. Most people are really positive and if they are anxious, then we work with them to find out why they’re anxious and how we can help them overcome those anxieties. For example, one of the people that we took to Glastonbury this summer, we just had one-to-one meetings with her and her mom and talked through all the possible situations and her mom said, “I felt really reassured and not worried at all” and that she was really excited for her on her behalf to be able to have an experience of a lifetime.

So it’s just about having good communication with people and talking things through.

PAUL: We’ve had that in the past, haven’t we? Looking at Glastonbury as an example where parents who have expressed a fair degree of anxiety about what could happen. We’ve listened and we’ve worked through those as well. I think when we first started the project, I was also mindful of that. We were a new project without any track record and so parents would quite rightly say, “Who are those people?” So we worked with some people we did know, parents that we did know and who trusted us and knew our backgrounds and used that to start building that foundation and also being really clear and transparent with people about the steps that we do take.

DEBRA: Not everyone’s going to have access to Gig Buddies, hopefully soon it’s gonna be worldwide in every town, and clearly you’ve got the model for that, but what could parents do to help their young person as an adult, what kind of things would you recommend?

PAUL: If you’ve got like a network of friendships or something like that. And also, thinking about perhaps going out and starting off with things that aren’t going to be really challenging and create loads of anxiety so if someone’s never been to a gig before, you know, maybe don’t go to the local arena where there are 10,000 people screaming their heads off and crowds surfing. Maybe go and do something like go to the pub or something like that. Maybe just try stuff out as well, you know, reflect on what people do and don’t seem to like. So when we typically ask people what they’re into, as one of the first questions we ask people, it’s generally X factor. But that’s what people watch on a TV, listen to on the radio and it’s on Youtube and all of that sort of stuff.

And I see our role is about to try to widen people’s perspectives as well and going down the town to local pubs and see what other sorts of music they do or don’t like or other things they can try. So I would say, you know, ideally, if you can hook them up with somebody who would be happy to go out with them, just go and do buy up the small things and see how they go and just get a bit more adventurous.

DEBRA: Thank you very much.

PAUL: Thank you.

KATE: Thank you so much.

DEBRA: Key takeaway? It’s the simplest ideas that can have the biggest impact. This is on the face of it, a very simple idea but when we think about it, it could change young people’s lives in so many ways. And also, I think to change other people’s lives around them.

Resources
Stay Up Late
Gig Buddies
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Increasing The Options With Scope

Podcast Episode 67 Did you know what you wanted to be when you grew up? Most of us didn’t but we figured it out along the way because we were given opportunities for part-time work or work experience. For many young people with additional needs, this doesn’t happen, meaning they don’t always have a clear idea of their options.

In this episode, Guy Chaudoir from Scope explains why this shouldn’t be the case, and discusses some ways to help young people increase their options. This includes changing the way they approach applying for jobs and the interview process. It’s also about changing the perceptions of employers and Guy explains the work Scope has been doing in this area.

Scope provides a bridge to employment by helping young people with additional needs to find their own path into work. They also help open doors with employers, so the path can continue forward for both the young person and their employer.

Show Full Transcript
Podcast Transcript
DEBRA: Welcome to Episode 67 of the Journey Skills podcast. Back to my favorite topic which is you know by now is work but from a slightly different angle. I’ve spoken to quite a lot of people recently who I would describe as social entrepreneurs who have started up social enterprises. And we talk about that in this episode, we talk about the importance of social entrepreneurs and social enterprises. I’m talking to Guy from Scope which is a UK-based organisation which is focused around helping young people with additional needs get into work. And although this is a UK-based organisation, I’m sure wherever you are in the world there are very similar organisations.

It’s great to have people starting up small businesses from scratch, maybe you even saw my Facebook live last week from Ignition Brewery in London that was celebrating the one-year anniversary of their taproom and they’re a really great example of social entrepreneurship and social enterprise. Nick and Will have created a sustainable business which pays the people they employ so it’s not a charity and it survives because the product is something people want. It just happens to provide employment for people with additional needs.

So what Scope is, I think it’s a bridge between employment and if we’re really honest, that proverbial cliff that people talk about, that young people with additional needs can fall off when they move from education and they don’t necessarily have anywhere to go after that. And Guy explains all the things that Scope helps young people with and they are the essential things that we think about; CV writing, interview skills and things like that. But he also talks about the importance of helping young people identify where they really want to go because as he explains, sometimes they haven’t really sat down and thought about exactly what they want to do, they’re just thinking about ‘I want a job, I want to work’. And I believe that organizations like Scope are key.

If you listen to any of the podcasts where people have started up businesses which make money so they can spend money on employing more people, all of those organizations have behind them in some way shape or form another organization helping young people develop the skills that they need. Scope are a charity and they play a really important role, not in providing employment itself, what Scope and other organisations do really effectively is not create jobs, they help create the employees. They help develop the skills of young people so that they can see themselves as employees, so they can see themselves as someone who can go out and get a job.

DEBRA: Today I’m talking to Guy Chaudoir who’s from Scope which is an organization based in the UK. Welcome, Guy.

GUY: Hello.

DEBRA: Can you tell me a little bit about yourself first of all and then also about Scope?

GUY: I’ve been at Scope for nearly seven years, managing all of our employment services but previously to that, I’ve worked in apprenticeships both here and in Australia and also supporting people get into work and in my previous life I was a retail manager working for a big organizations like Virgin. So, Scope, we’re a national disability charity and we operate in England and Wales and our real aim is about equality. So, it’s about equality for disabled people so that they have the same rights and access as non-disabled people, be that in getting the best start in life, being financially secure, or to be able to live the life they choose.

I work on, along with my team, around employment.  I manage Scope’s support to work service which is a national digital employment service which supports disabled people across England and Wales, to help them find paid work in something they want to do. So my team really help people to identify what skills they have, identify organisations in areas and career paths that people want to work into and then really with the nitty gritty things about finding work from creating and evaluating a really good CV, developing a really good cover letter or working through application forms to things on interview skills and making sure that people are getting the right support, be it reasonable adjustments when they start work or getting the right support in terms of any adaptations they might need for an interview or for an assessment center as well.

DEBRA: So how do people come to Scope?

GUY: We have quite of presence on the High Street with the Scope retail charity shops which raise funds for the organization but also, we do a lot of digital marketing and have a digital presence, through Facebook and Twitter. We try to make sure that when people are looking for disability employment through search engines that they find us as an organization.

So when someone does find my service, the support to work service, they can sign up online and once they sign up online within forty-eight hours they’ll get a call from one of the team to arrange an initial appointment with an employment advisor, over the phone or it can be via Skype or via email depending on people’s needs or in terms of barriers to employment.

DEBRA: So what kind of things do you talk about in that first phone call?

GUY: The first phone call of Scope session is really about what people have done before, what they’re looking for. So there’s no real kind of hard and fast rules, it’s very much about having an initial conversation getting to know the person to see what they perceive their barriers to employment are or what the barriers they found previously and then really working with them to create an action plan that’s really personalized to themselves.

So, the first tool to finding a job even now and has been for a long time is a CV. If you’re not getting interviews, there’s possibly an issue with the CV, it’s not doing the right thing or you’re not applying for the right jobs. So the team really take that back to basics, look at CV’s, are they the right kind of thing, are we applying for the right thing, are people limiting their job search or are people just going in the market and not being savvy in terms of what jobs they’re applying for and just applying for everything, which then doesn’t help at all.

DEBRA: What would you say to these challenges that it’s the CV, is that something that they struggle with?

GUY: Not necessarily. I think some people just need a little tweak and it can be just a little tweak from an unprofessional email address to too much on it. We’ve seen some CVs going back a good twenty years not very useful. That’s just one kind of barrier sometimes it’s barriers of perception of people applying for jobs.

And I think it’s also about the availability of what people want to do in their local area so there might not be the opportunities that they can see in the local area and sometimes that’s a real barrier. Unfortunately, there’s not a lot, all we can do about that in terms of creating those kinds of jobs. How people apply for work especially how people perceive themselves is also sometimes a real barrier. We see a lot of kind of negative language on CVs of people saying “I can’t do this, I can’t do that, I can’t do this” rather than talking about what’s unique about them and talking about what they would bring to an organization.

DEBRA: Can you talk a little bit more about that then, the big question that people often have with their CV is whether or not they talk about what their additional need is?

GUY: Yes and I always think it’s personal choice and I think there are lots of really good organizations out there who really want to employ more disabled people and if they are saying that on their job advert, then I think this is something you would mention in the cover letter or  the application form rather than sticking it on your CV. I think knowing when to talk to an employer about your disabilities is really important and we have got lots of information about that on our website.

But I think it’s really about that personal choice but also thinking about “If I am to get to an interview would I need an adjustment for the interview?” It could be a physical adjustment in terms of if you’re a wheelchair user and there isn’t a lift or there isn’t a ramp, that’s probably not going to be the best place for you to work anyway.

But thinking about what you need to tell someone so you might tell them when they offer to take you to the interview stage. So, I, as a rule of thumb wouldn’t put disability or barrier on the CV but I’d really think about having a strategy of how you are going to talk to your employer about your disability, about what adaptations you need.

We’ve worked with a lot of deaf customers who have text-only written on their CV and that’s a need for them because if someone rings them and they don’t answer the phone then they are never going to be able to get into employment. As a rule of thumb, I’d say not in a CV but really think about when you are going to talk about it if you are going to talk about it.

My suggestion would be to obviously talk about it if it’s a guaranteed interview that is the organisation is saying “guaranteed interviews to disabled applicants”. Then definitely you need to talk about it otherwise you’re not going to get that guaranteed interview. But also if you need certain adjustments when you’re going to start work but it’s really a personal choice if you want to talk about it and it might be once you’ve started work, that you talk to your line manager about your condition/disability/impairments or you talk to your team, or you don’t talk about it at all because it’s your business at the end of the day.

DEBRA: When it comes to interviews though, for some people who have additional needs,  say something like autism, it might be something that they’ve mentioned in the cover letter though.

GUY: Yes, definitely, we’re working with someone at the moment for who an interview’s quite a petrifying experience. He is on the autistic spectrum and he was sent to an assessment center and they just said in the email they wanted him to go to an assessment center. He didn’t know what that meant he had no perceptions or ideas so we worked with him. We didn’t do this for him we said: “Go back to them and ask what exactly is going to happen”. Then he knew that it was going to be a group session and then it was going be one to one talk and then they were going to ask questions.. So it was more about him saying “I’m autistic. I need to know what this is going to be  like exactly so I can plan and organize myself.”

And I think sometimes recruiters not necessarily trying to trick people up but they just don’t think about these things and I don’t think anybody does it with any kind of malice. I think it is about people going “Oh, this is just the way we do it” And I think a real reasonable adjustment is a change the interview process. And that’s something you can definitely request.

So if you think you’d be better to show someone that you could do a job then requesting a work trial or a trial shift is a really good way to show “Yeah, I can do that” rather than somebody who’s really good at sitting in front of someone and telling them they’ll be good at their job or being asked competency-based questions or hypothetical questions could be a real struggle for someone on the autistic spectrum.  If somebody is saying “Can you tell me what would you do in a situation?” then they might respond “I don’t know, I’d have to see”.   So it’s better if they can talk more about their previous experience. I think asking for adjustments in interviews is really important I don’t think people do it enough.

DEBRA: I was just going to ask you, what do you think is the biggest challenge? You mentioned things like people going for the wrong jobs and maybe putting too much on their CV, but what from your experience is the biggest issues for young people looking for work?

GUY: I think it’s sometimes and it goes back to school and especially people who have additional needs or special educational needs who don’t necessarily get the same opportunities as their peers in regards to work experience or summer jobs and that kind of thing. So, they haven’t got anything to put on their CV because they got excluded from doing work experience. So, I think that can be a real challenge because when you apply for a job and put in a CV and you haven’t got anything to put on it that’s really difficult.

I think it’s also just about opportunities so it’s about grasping every kind of opportunity that you can. I think access to apprenticeships is really difficult because apprenticeships, until recently, required people to have some level of Maths and English but there has been relaxation on that around people with learning disabilities. But I don’t think that it’s been well enough communicated, especially to apprenticeship providers and employers so it’s about making sure that people are aware of that they can access on an apprenticeship even if you don’t have the level of Maths and English they’re requiring if you’ve got a learning disability and if you have an educational and health care plan.

But also, it’s just a bit about employer attitudes as well. It’s just people thinking “Well this person’s going to be more difficult. This person’s going to be harder to help.” We supported someone in recent years who wanted to work within a creative field but was finding it really challenging to find that opportunity and we worked quite closely with an employer to really talk to them about what needs he had and what they could do to make the environment more accessible to him and that was really good. They came to us and said “We don’t know what we need to do” and one of my team sat down with them and said, “Well, think about breaks, think about quiet places, think about lights that might affect people.” That kind of stuff is often what employers can buy into and really help that person to be successful in their role and really develop.

DEBRA: Do you think there’s a misunderstanding of what reasonable adjustments are?

GUY: I think people don’t know what they are. I think in the field that I’m in and you’re in that we know what it is and we can see it but I think the average person on the street who might own a small business or shop or restaurant or cafe doesn’t know what a reasonable adjustment is  and wouldn’t understand what it is.  I think that’s a big education piece for us as an organization but also from a policy point of view from the government for them to be able to say “This is what a reasonable adjustment is, this is why you have to do it by law.  I think the problem is that the term reasonable is very varied in people’s minds so that doesn’t help. I think once people are aware of it, they’re like “All right. I understand now.” But I think the awareness isn’t there.

DEBRA: You think there’s not a clear definition?

GUY: Well I think the definition is whatever is deemed reasonable so it’s not a clear definition to me. That’s kind of a tricky part of it as well and I think there is that support and there’s support through access to work which I think is a really important scheme that also one people aren’t aware of. Unfortunately, it is sometimes the case of the person looking for work having to educate an employer and saying “I’ve got these additional needs, I’ve got these barriers or I’ve got this supporting needs. But this is what we need to do, here is a fund from the government from access to work that will pay for this. All you need to do is agree to it” and then I think they will go  “Alright. Fine.” And I think that unfortunately the onus is being put on disabled people to push that rather than people understanding this in the wider business community.

DEBRA: Do you think that’s a big issue then, cost?

GUY: I think that it costs sometimes but the research we’ve done as an organization has said that, that employer’s attitudes are a big barrier and I think it’s more about the employer’s understanding as well and that’s what we really want to change as part of our Work With Me campaign. This is really focused on employers to show them that there is an untapped pool of disabled talent out there and that by being aware of reasonable adjustments and different schemes and different support that’s out there that disabled people can be an asset to an organization. They are shown to stay longer in positions and be more productive as well so it’s a real win-win for employers, they just need to get on board with that.

DEBRA: When you try to persuade them, do you say “These young people will stay longer?”

GUY: Yes and  we talk about that (and we’ve got a lot of research around that)  but we really talk about the person, we talk about why they will be an asset, about how they can show they’re an asset, how they can speak positively about themselves and show themselves as a positive motivated person that’s going to be the best fit for their organization. And that’s what everyone should do in any interview situation.

DEBRA: Have you got some examples of employers that you think are ahead of the game?

GUY: We work a lot with Virgin Media and so they have really committed to becoming a better employer of disabled people and are doing a lot of work in that space. Where I’m seeing a lot of really good work is in kind of like the social entrepreneur field so lots of organisations that are setting up things like cafes or valet services and I think those are really good and I’m seeing some really good growth.

We work with a partner called Unlimited and they are really keen to promote social entrepreneurs for them to go on to employ more disabled people and then create more disable entrepreneurs as well. Because self-employment and working from home is a really good opportunity for disabled people who might have access needs but also might have a fluctuating conditions so that working from home or being home-based is a real kind of bonus. And the internet has opened up those kinds of opportunities. Skype meetings and conference calls means that you don’t have to be nine to five in an office to be able to do a similar job. We have got people who work for us who are home-based and can do exactly the same as someone can in the office and probably get less distracted by everyone else around them anyway.

DEBRA: In terms of helping people, you help them with CV writing, with getting interviews and talking about reasonable adjustments. When they’re actually in employment, do you provide support to the employers?

GUY: On our support to work service, we don’t because we’re national service and it’s more a kind of advice and guidance service but we offer three other employment services which are much more localized face to face support. We work with employers to ensure that somebody is comfortable and in employment and any kind of barriers or bumps along the way that come along so we definitely do that with those ones.

We’re just about to launch a new service, just so new it doesn’t have a name yet which we’ll be launching across the whole of London for young people who are in education and it’s more career advice service because we’re finding that the people coming to us who are coming out of school with special educational needs or additional needs and they haven’t been given any kind of careers advice. We are going to be working with schools across London to work with disabled young people to give them kind of career advice and goals and really work with them to think about what’s their next step.

DEBRA: If you had to talk to parents who maybe won’t have access to Scope or can’t get help getting the young person access to Scope, what kind of tips would you give them in terms of getting the young person ready for employment?

GUY: I think it’s about confidence and motivation. There aren’t many jobs where you won’t have to talk to somebody at some stage so it’s about being comfortable in those kinds of social situations to be able to talk to someone and then that can develop into interview skills. I think volunteering and work experience is really key, to give people that stuff they can put on their CV. It also builds that confidence around meeting new people, learning new things and really kind of seeing if that’s the right kind of career goals to consider. I think it’s about opening your eyes up to all opportunities that are out there. Make sure that they’re in touch with local councils to see if they’ve got any kind of schemes to support young people. All the councils I know are interested in recruiting young people and apprentices into their organisations. Is the university route right? Is straight into work right and how does that work?’ and looking at other supported employment services or looking at really just any kind of community groups that are doing anything to develop those kind of skills as well.

Because I think with most jobs you can be taught how to do the job on the job.  A lot more what people looking for are attitudes and attitudes, about looking at where this person fits in the team. And so, that kind of confidence to communicate with strangers is really kind of important because that will really help in terms of developing those kind of social skills and social networks. So it’s really about thinking about those social kinds of networks and I’m not talking about getting a LinkedIn profile, I’m talking about just knowing your friends and where they’re going to or the people you’re in a club with, or an organisation that can really help you, that kind of networking as well.

DEBRA: I’m getting the impression that often young people with additional needs then aren’t really preparing for work in the same way that someone else might.

GUY: I think that’s where we’re falling down is that people aren’t being given those kind of skills to transition into work, understanding about applying for jobs from CVs to cover letters, interviews to managing money, to understanding the wider world. I think that’s where the focus needs to be about making sure that people are prepared. If they’re able to and they want to work and knowing how to work, how work works. We do a lot of what we call World of Work sessions where we take a group of usually young people to different businesses that we’re working with and they get an understanding of how the business works, how’s the different parts of it fit, how’s the different functions of the organisations fit together and what work is like.

Also, the understanding that someone’s work is quite boring and sometimes you might just be sat in front of a computer all day and typing and sometimes work isn’t that exciting and understanding that what you think might be really exciting is after getting some experience  a case of you going “Oh no, I definitely don’t want to do this”. Having a real perception of what work is like is really important, I think.

DEBRA: You’re suggesting that we need to give young people more chance of doing work experience, the big challenge there is of course, perceptions among employers especially when  work experience means something you tend to do in a smaller organisation.

GUY: I think lots of large organisations do have work experience schemes abut it is about challenging that perception again, similarly with employers, but I think work experience is a real kind of feed into it. And it doesn’t have to be two solid weeks of work experience. It could be a taster a day or just to see what a day might be like in an organisation. And I think it’s really about community engagement and about corporate social responsibility. It doesn’t hurt to ask and I think that’s the key as well and saying why you want it and how it would be of benefit and then how it can be of benefit to them so selling that. But it is a tricky one,  and I don’t think that barrier is ever going to go away A lack of awareness is the barrier unfortunately but I think that’s something to try and work with and try and make sure that people are getting the right opportunities.

DEBRA: And I would assume that the more employers that take on young people with additional needs, the more perceptions change?

GUY: Yes. Definitely and the research we’ve done says that lots people have never spoken to a disabled person or knew a disabled person, when you’re looking at this there’s forty million disabled people in the UK, that’s a lot of people. And so, I think it’s all about perceptions. It’s about the perception in the media, what people see on television, in soaps, in current affairs, in dramas, where the disability doesn’t define the person, it’s just part of them and I think that really helps in terms of attitudes.. its about changing people’s perceptions to ensure that there is a equality and that people can see that that and it becomes a norm.

DEBRA: Thank you very much for your time.

GUY: Thank you.

DEBRA: Key takeaways? It’s essential that young people have the opportunity to explore their options to try and figure out exactly where they want to go and that they have the resources and the assistance to do that. And also, that it’s important to try and get experiences of work along the way. And I think this is one area where, I’ll be honest, I don’t think I’ve cracked it yet, I don’t think that my daughter has had enough experience of work in her life.

Resources
Scope Employment Services
Work Advice
Writing A CV

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Taking Off The Mask

Podcast Episode 66 It’s fine to be aware and even try and understand autism but actually what matters most is acceptance. This is the view of Kieran Rose, also known as The Autistic Advocate. Kieran has autism so he speaks from personal experiences and explains why he believes that acceptance is what is needed even more than awareness.

Kieran shares his personal journey and provides practical advice for both parents and young people with autism on how to manage the challenges they will face. He also discusses the way people with autism are often stereotyped and the impact that has. He also talks about what he sees as an industry that has been built around autism, and how that is actually contributing to delaying real change.

Kieran might be talking specifically about autism, but the really his message applies to everyone with an additional need. Barriers would fall much quicker, especially in things like employment, if people focused on positive acceptance of each individual’s strengths and their weaknesses, not just passive awareness.

Show Full Transcript
Podcast Transcript
DEBRA: Welcome to Episode 66 of the Journey Skills podcast. This week, I am talking to Kieran Rose who’s known as the Autistic Advocate. Kieran was diagnosed with autism later in life so he’s able to offer insights on how that feels and how autism impacted on his early life and how it impacts on his life today.

Not only that, Kieran, as the autistic advocate is on a mission to change perceptions about people with autism. He talks not about awareness or understanding but about acceptance. Because as he explains, he has autism and he still doesn’t understand it. As he also says, most people are actually aware of autism now so the next step now is acceptance. And accepting people as they are and for who they are.

This isn’t just relevant for anyone who has autism or any additional need; this is about every single one of us. As a parent of a young person with additional needs, I think her focus is about being able to do what every other person does and that comes straight back to acceptance of her for who she is.

You’ll also hear that Kieran has some very strong opinions on not only the way people with autism are stereotyped, but also the industry that’s been built around autism. This is definitely a podcast to get you thinking about some of the bigger issues.

DEBRA: Can you just tell me your story, your journey?

KIERAN: Absolutely. I was born in Essex in the UK and struggled all my life from pre-school. Kept a lot of it inside me and sort of always felt on the outside of everything but just kind of try to stuffed it within me and carry on going and carry on going. Until eventually, I was diagnosed as autistic at the age of twenty three which was sixteen/seventeen years ago.

And at that time, there were very few autistic adults publicly around. Obviously, the internet was just beginning back then so I didn’t really know what to do because everything that I read was about children and so none of it was relatable to me really. So I just popped it and carried on, went through a cycle with getting jobs, losing jobs, burning out, going through quite severe mental could kind of mental health crisis and things like that.

And then, when I was 33, I was constructively debarred from my job and my third baby on the way in obviously kind of panicking at that point and realized that I needed to sort myself out and find out what was going on with me.

So I stumbled across the autistic community online and learned an immense amount about myself and found so many relatable situations in people’s experiences that were the same as mine and eventually I kind of pushed on through that and have become an advocate. It’s my full time thing now to the point now where I also serve the social enterprise now to support parents and autistic adult like diagnosed autistic adults and I consult now for the North East Autism Society, Durham Constabulary and quite few organisations as well.

DEBRA: So, what kind of things do you do as an autism advocate?

KIERAN: Lots of autistic people advocate online and share their experiences and try to support parents where they can and I do those things but I also try to platform as many people as I can as well. So 3 of my blog I quite have guests blogs come on and I kind of blog while I was having this conversation so I have other autistic people come on share their story who don’t have a platform of their own or don’t want a platform of their own but just want to get something out.

I run campaigns. Last year, I did a social media campaign called #TakeTheMaskOff which is about autistic masking which is basically suppressing who we are and kind of going through life like that. I mean that was huge. That had to reach some blog 5 million over across all the social media platforms and things there. They’re a lot of public speaking and then the consultancy as well. I do training and helping organisations to support autistic people better.

DEBRA: So when you say training, what you do when you go in to organisations? So you’re making aware of some of the issues?

KIERAN: Yes. A lot of it is around talking to employers and like schools, businesses, public sector organisations, things like that. Going in and basically talking to them how they can support their autistic employees better or for schools, how can them support their people and students better. Things like that.

My training is very different to most autism training because a lot of autism training is very theory-based. It’s about raising awareness and I just crumple that up and throw it away. Theories are theories at the end of the day. They are effectively irrelevant. They don’t practically help people. So, I what I deliver is a lot about identity and the importance of acceptance over awareness because awareness is passive, it’s you know, you’re aware about something, that’s where you need to be. But acceptance is actually doing something. So a lot of my training is about collectiveness and actively supporting people.

DEBRA: What do you mean by acceptance?

KIERAN: Acceptance is things like well, autistic people we stim which is a physical movements, vocal movement, vocal repetition, things like that. We might make noises in things and I jiggle awful lot and a hand flat is kind of a.. the stims that I do were quite kind of traditionally what you’d expect them; the physical side of all autistic people would do.

So accepting that we have very different communication styles quite often we can be quite blunt and honest, very direct and honest and quite often just different behaviors and things which are sitting by society as abnormal. Where I come from a position of…I’m very big on neurodiversity. Neurodiversity explains that everybody in the world has slightly different brain, we have different personalities, we’re all different people but within that neurodiversity, so things like autism where our brains work very differently from the rest of the world. And a lot of what I talk about in acceptance is about accepting the fact that there are very different people in the world and just because they act differently, behave differently, speak differently, communicate differently, it doesn’t mean that they’re broken or wrong, it just means that they’re different.

DEBRA: You think we’re still at the awareness stage as opposed to the acceptance stage then, in general?

KIERAN: Yes, I think kind of. I think we just need to push past awareness completely, kind of just push it to one side. And pretty much everyone’s heard the word autism, that’s awareness. That’s it! Take that portion. Then someone acts in a way that you think is strange then you automatically start pre-judging things. Things like eye contact. A lot of autistic people don’t make eye contact with other people because it’s actually physically hurt us to do so but we judge them that. All those kind of prejudgments that come with people who act differently and acceptance is about placing the same to people you care. If someone is not looking at you, it doesn’t mean that they’re not listening.

DEBRA: So you’re saying that the sort of understanding is fine but if you’re not accepting people.. because you can understand why someone does it but you’re not necessarily accepting that it’s okay for them to do it?

KIERAN: Yes, absolutely. A lot of autistic advocates say about acceptance. People think that everybody has to understand autism. Nobody can really understand autism. I’ve been doing this my whole life and I don’t really understand autism still. Actually, we lack a lot of acceptance from a lot of people and we prejudge a lot of people and it all kind of fits into the same things.

DEBRA: Just back to the sort of thing where you said about work and you were working and then obviously didn’t keep jobs. Was that because of that general lack of acceptance of I guess of the way they were?

KIERAN: Yes, to a degree. I burnt out of college, couldn’t cope with college anymore, lots of sensory pressures and I was struggling to understand myself obviously at the time of things. And I got a job working for a customs and excise. It was two weeks on, two weeks off, just processing the IT forms so I can sit with my headphones and listen to music for two weeks and then go home for two weeks kind of thing.

It was absolutely perfect for me but then I got a promotion, transferred over to the office of fair trading so I had an hour and a half commuting to London and obviously walking through the big city and being an office with new people and it was a really, really strange environment as well because if you didn’t ask for work, you didn’t get work. So effectively, I could have sat in the office all day and done nothing which was a really hard thing for me to do because I like to be at projects and be active and so I burnt out of that.

And then started working in schools as a teaching assistant and that’s where a lot of my career’s been now, around education. But a lot around that was around before I disclose to people, attitudes change towards me. They treated me differently. Explain as I was going along and so like I was hiding, I was acting neuro typically and acting normally. Everything was fine then but the moment I stop doing that or the moment I told someone I was autistic, that was it. It was kind of everything changed. And I was pushed out at a lot of jobs, I would say my whole life after that. So that’s been a kind of path, being pushed away.

DEBRA: Can I just talk about that then, the idea of disclosure. Do you think that is something that we need to be talking about more so that people feel that they can say, ‘Actually, look I’ve these, I’ve got autism or I’ve got an additional need’. Do it upfront? Rather than and I’m kind of speaking a little bit of my own daughter thinking that she would rather that she didn’t say anything because she didn’t want people to prejudge her ability.

KIERAN: My attitude towards work if you have any kind of disability is to put on the application form. Autism is a kind of a gray area because it you know some people say that’s not a disability, some people say it is. I think it kind of is a mixture of both because society disables an awful lot of us. But there are aspects of autism which are kind of disabling so I think you need to be upfront about that and if an employee takes you to interview knowing that you’re autistic or knowing that you have a disability then at least they know that upfront they’re taking that on board.

I think a lot of the issues arise when people don’t want to disclose then they might get a job, they might make it through the interview, they might actually get into the workplace but then issue start coming up and they still don’t want to disclose but more issues start coming out and then it becomes a reason to get rid of you and then if you do disclose then obviously like I said it’s that prejudgment. There’s this assumption that goes with autism and work that autistic people are going to lead loads of financial adjustments and loads of support and it becomes a big effort for the employer to actually keep that person on or to take that person on.

When actually, that’s not true. I saw a lot of reasonable judgments are very easy to make and actually benefits lots in and lots down a little bit. You know, not having open plan offices where everybody’s talking across each other and phones are ringing and all those kind of little tiny things that make a huge difference to an autistic person. A lot of non-autistic people benefit from that as well.

So, a lot other things that when employers think about taking on autistic person, just a more mess for them, don’t be afraid that it’s going to cost you a fortune because actually the positive side of autistic people is quite often they’re very focused. You know, like I said about projects, lots of this love projects and things we can get a tiff into and manage and control, you know. So there are a lot of positives to employing autistic people but again it’s that pre-assumption that there’s negatives attached to it.

DEBRA: Back to there you saying that put it on the application form, but I guess a lot people’s mistake is that they go actually they don’t want to because I won’t even get to an interview for a start.

KIERAN: But then the question you got to ask yourself then is that if you put it on the application form and then they’re not going to give you an interview because of it, why would you want to work there in the first place? It’s a very basic and easy thing to say because obviously, there is a record statistically huge unemployment rate amongst autistic people.

Part of the reason for that is lots of autistic people who are in jobs aren’t engaging with the statistics about employment first of all because they’re safe. So that kind of excused it anyway. But to my mind, it’s kind of a lot of autistic people are out of work and part of the reason for that is because of employers and because of attitude. So, it is to admit to say kind of you know, you don’t want to work there, they’re not going to give you the job in the first place. What’s the point of them applying to them kind of thing.

It’s about weighing up your financial situation and weighing up your mental health because if you’re going to work for an employer that doesn’t want you there because you’re autistic, that’s going to break you. It really is. So, it’s kind of your life is worth much more than that.

DEBRA: Do you think it’s changed, our employers becoming better at making those reasonable adjustments?

KIERAN: Obviously, it very much depends on the employer. I think more people (this goes back to awareness thing) becoming aware of the benefits to employing autistic people and other neurodiverse people as well. Neurodiversity has become a bit of a buzz word in the in the world of work. They have a lot of employers use it but they don’t really understand what it means, either. I think things have improved but we have a very long way to go before autistic people are given equity.

DEBRA: Do you think that’s because of the employers or because when people getting I’m thinking it’s kind of like a macro/micro to me, but macro where you got the employers understanding that someone with autism can be a valuable employee and it doesn’t cost that much but when they get into the workplace, don’t you then need that acceptance of your fellow employees?

KIERAN: Absolutely. I think it’s huge societal issue. I talk a lot about there’s a negative narrative around autism and it’s driven by a lot of autism professionals, it’s driven historically by the diagnosis and about how autism has been looked at. Society has a very binary way of thinking. You’re either one thing or you’re not. Quite a lot a lot of aspects of society, binary thinking is something that autistic people are accused quite a lot. And a lot of it is a big projection I think. So, in terms of societal culture, autism is looked on negative thing, it’s looked on autistic people are incompetent, you know we can’t advocate for ourselves, we can’t talk for ourselves, there’s a lot of issues around the lack of support, the lack of money, autism, the rising diagnostic rate.

So the negative narrative, there’s lots of assumptions and expectations made around autistic people and there’s an autism industry that makes a huge amount of money out of autistic people and their families. It’s worth billions around the world. So there’s negativity that is carried around autism which is driven by this industry is actually having this social impact.

You know, all of this kind of thing that’s carried with it and that feeds into the whole employment thing as well because you put the word autism on the application form and the majority of the employers are going be like that runs through their heads, subconsciously. All of these negativity, they’re like ‘No, we’re not having that’ but then, you get into the workplace and maybe disclose to your employer or your coworkers, your colleagues, and then all of that negativity is running through their heads. Or they know a child that’s autistic who might have meltdowns, might have sensory needs, and it’s like ‘You don’t look like autistic, you’re not like this’ and so all of these kind of feeds into their head.

You’re absolutely right, this awareness (going back to the question) but you need that, you need the awareness from employers first of all, you need that understanding that there isn’t these negativities or hype and is actually not a rear reflection of is actually happening in the world. But from colleagues and things, you do need that acceptance, you need to understand that certain people just communicate differently. They might read emails rather than being spoken to. Or you know, they might like to sit quietly at lunch time and not coming to the staff room and things like that. It’s all these little tiny things that really add up and make a huge difference to autistic people and how happy they are.

DEBRA: Can you give some advice then for parents because kind of what you’re basically saying there is that there’s lots of negativity around autism in general, about the impact it has on the individual and the impact it has on the family. I know what you mentioned before about some employment (maybe some of the figures are a bit fudge) but genuinely, there’s very low rates of employment for young people with autism. So, can you give some ideas to parents and how they deal with that, their young people as well, what can they do to help change those ideas and think more positive for themselves?

KIERAN: Absolutely, I mean a lot of it like I said the negativity tends to stop when you stop accessing the diagnostic pathway and we have a child confessing by the mental children health teams are that there’s no support. There’s a lot of negativity, you know, so it’s like if you get a diagnosis no one’s going to be there to help you at the other end. So, a lot of the support comes around peer support, from parents and things like that but there are amazing parents in this world and I work with a lot of amazing parents that don’t understand their children necessarily but are desperate to and really want to, want to make that difference in their lives but with the problem with things like peer support groups is that a lot of the negativity that I spoke about before can be passed around. Those peer support groups and it becomes very like negative cycle. And that affects how you view your child and affects how you view their futures as well. Because you look at a small child and you make assumptions about, you know, you have expectations about what you want for them. Their pathway is they’re going to school, they get a job, they got a family, you know, your grandchildren and you have this whole life mapped out for your child before they’re even born really.

And a disable child comes into that mix and then smashes all those thoughts. You go for a kind of grieving process for that which is absolutely natural. You now have to live your life very differently but a lot about supporting that child is understanding that what you see in your child right now isn’t necessarily what you’re going to see in them when they’re fifteen or when they’re twenty-five or when they’re forty-five. You know, people grow. Everybody grows and changes over the course of their lives and so you look at your child as a child all your life and you make assumptions about them but you can’t do that.

What you need to do is to instil in them positivity about themselves. You need to help them understand themselves as best you can. I mean for autistic kids, the best way for them to learn is for their parents to go and engage with the autistic community and so many blogs and vlogs and people doing things like I’m doing all over the world. So, there’s so much information out there to be found which is really positive, really engaging, practical advice and things and instilling that in your child, making them understand that autism isn’t just part of them, it’s their whole neurology.

I talk about autism being neurology. Autism is neurology and neurology describes brain, nervous system, fingertips to toes kind of thing. All of that is autism. Your whole child is autistic. That’s their neurology. They have completely different way of thinking, completely body works in a very different way, they process information in a very different way and trying to carve a part of that out is actually really negative for that person because it’s smashing their identity effectively.

And I spoke about masking earlier and lots of parents will understand what masking is and lots of autistic children go to school, they buckle everything up for the day and then unleash it when they get home or hold it in for years or whatever it is that they do. And it’s about helping them understand that they don’t have to mask, that what other people think really isn’t that important, that they need to be happy within themselves and accept themselves. Keep yourself safe, yes, that’s the most important thing but just that understanding of themselves and about recognizing, embracing that autistic identity is really, really important.

DEBRA: As an advocate, where do you think we’re going in terms of acceptance?

KIERAN: I see it at the minute there are, not being binary, but there are kind of two trains; one struggling forward with positivity, understanding, wanting to accept autistic people and there’s another one channelling backwards, especially in the UK as well. The reason the education system is just tumbling bounce into behaviour and zero tolerance, DNA test with its 10 year plan is once it’s roll out behaviour therapy, the front row treatment for autistic children.

So, you have this one train that’s going forward and understanding that autistic people needs to be accepted, the difference is okay, that everybody needs to wants to compromise together and then you have this other train which is about making autistic people behave, making them acting the way that isn’t autistic. At the minute I think, in the UK especially we’re in a really kind of balancing on a knife edge of where to go and I’m hoping because just from the reactions of things that happen on social media or on online, a lot of people hopefully are changing their tuner and jumping on the acceptance train rather than heading backwards, because there’s a legacy or the impact of normalizations of things as we do have a huge suicide rate amongst the autistic community.

All of these things, all of these negativities are feeding into early death rates and mental health issues and things, so embracing the positive side of it, not just accepting. You know, obviously like I said, there are disabling aspects and there are negative points to being autistic, but it’s about not focusing on those all the time and actually looking at these people and say, “Oh hold on a minute, you have strengths. You can do this. You’re amazing at this. Let’s embrace that. Let’s let that lead. Let’s follow that lead. You look at what you need to make yourself happy.” It’s about shifting that attitudes. So like I said, I’m hopeful. It’s going to take a long time.

DEBRA: Do you think that those inspiring stories of someone who’s done well that has autism, do they help?

KIERAN: It’s kind of a 50/50 thing. I think sometimes it helps parents to look at other children or autistic adults to say ‘You know you’ve achieved something’ but I think the problem is, from my perspective and from an autistic person’s perspective, you see things like that and it’s kind of… There was one I saw the other day and it was the ffirst autistic person to pass the bar in the US to become a lawyer and I was like I’m sure there’s plenty of other autistic people that have passed that bar.

You know, it’s become a kind of “Well done, you’ve done this despite being autistic”. And probably because she was autistic that she passed the bar, you know, because of her intense focus or her ability to do these things and to have a creative and out of the box way of thinking. They’re the huge skills. It’s inspiring for some people but then it also has this really negative effects on the community, on the autistic community. Everyone who’s disable has that kind of negative kind of connotations to it and that child rightness, you know what I said before about kind of making assumptions about people’s lives and it’s that kind that feeds into that. The masking plays into that because it’s assumed that we go out of autism, but we never do because it’s us.

DEBRA: Those inspiring stories always strike me as what you just said about a well done you rather than actually that’s to be expected.

KIERAN: The connotation there is that you have the assumption that someone who’s autistic could never do that thing. When you actually look at it from that perspective, it’s actually a really, really negative thing. It’s really obviously the achievement should be applauded, everybody’s achievement should be applauded but you know, when you see something like that around social media and there’s 10 million people saying ,clapping maybe it’s good for that person but as a way of changing that societal filter power autism is looked at, it’s actually negative.

DEBRA: Yes, because it’s almost like what you said about that person is kind of fitted into a box, haven’t they? And had done a job that other people do so therefore they’re okay, people say fit in to that box as supposed to doing something a bit different and being congratulated for that. Or, you know, that sort of job is seen as being aspirational, isn’t it?

KIERAN: Absolutely, yes, it plays into a kind of a whole hierarchical thing, doesn’t it? And that we’re having that culture. You’d never celebrate an autistic person being a bean man, why not? Why would you have these assumptions about certain job. This is why I do what I do. It’s obviously very focused on autism but it’s not just about that.

I see it as a civil rights movement. It really, really is. And say alongside like feminism, race issues and it’s kind of that acceptance thing there as well because obviously you wouldn’t celebrate a woman for becoming a lawyer. The whole 10 million people on social media don’t applaud that so why would you assume it with other things as well? It’s really that kind of that thing.

DEBRA: You’ve kind of touched on tips for parents in that but what about a young person who’s struggling at the moment, going through some of the things like you went through. What kind of things can you say to them to help them or maybe their parents can tell them?

KIERAN: It’s obviously very hard in the moment, thinking back to where I was in, just a trigger warning for your listeners. I took an overdose at 14. It was because I’d muffed for years, I’ve never melted down, I was shut down, I’m selectively mute as well so I went a long period of that without actually speaking to people and sometimes week. And all of that related to kind of anxiety and things and I understand in the moment, as a child and feeling the way that I did, I couldn’t see that there was a way through that or way out of it.

It’s taken me a very long time to get to where I am and to fully kind of fully accept myself and understand there are just some things that I can’t do and there are things that I need help with and that’s not necessarily my fault. And a lot of that is about blame. A lot of autistic children aren’t given the opportunity to learn about themselves. A child gets a diagnosis, teachers get training, parents get training (it might not be very good training) but you know, they have general awareness, and the one person that never gets any training is the child. It’s expected that the parents going to pass all this information on to the child. It’s kind of it’s difficult for parents because the parents can’t get their heads around it either. And so a lot of it is about learning to accept yourself and just be yourself.

And again it’s a very easy and simple thing for me to say because it took me so long to do it but out there right now is a wealth of support and information that I never had at a young age. And I think a lot of parents don’t actually realize how much positive information is out there. I would find blogs by autistic adults and there are blogs by autistic young people, autistic teenagers, all the people who are out there putting themselves on the line and putting their life out there in public but that’s all out there for you to learn from and there are such a wealth of positive brilliance out there for you to learn from.

DEBRA: Kieran, thank you so much for your time.

KIERAN: Lovely talking to you.

DEBRA: Key takeaway? Acceptance over awareness and acceptance over understanding. It’s nice to have the first two, but in reality, only acceptance will move things forward especially when it comes to things like work for young people with additional needs.

Resources
The Autistic Advocate Website
The Autistic Advocate on Facebook

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