Tag Archives: special needs

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.

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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.


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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.

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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.

Relax Kids
Dana’s Facebook Page

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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.

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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.

Spotlight Brewing Website
Spotlight Brewing on Facebook
Spotlight Brewing on Twitter

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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.

Yoocan website
Yoocan on Facebook

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Holiday Take-Homes

Shake things upHolidays are a good time to shake it up. Normal routine is out. Normal sleeping is out. Normal food is out. So with all this disruption, when could be a better time to jolt our children to greater independence? You take more of a holiday. Let them work.

You deserve a rest. You have more time because, presumably, you’re relaxing as a family. So don’t hurry. You don’t have anywhere to be. Use the time as a slow opportunity to solve ongoing problems/issues that you don’t always have time to address. Start the day by letting them get their own breakfast.

We first did this a while back now with our daughter at the buffet breakfast area of the hotel in which we were staying. She enjoyed the adventure. First the juice – bring it back to the table. Next the cereal – back to table. Eggs and toast – table. Then pastries. We did, breakfast pastrieshowever, quickly realise we didn’t just need to show her how to get breakfast, we needed to also teach her restraint and healthy eating. We aimed for a reasonably healthy breakfast, whereas without guidance she went for the less healthy more sugar option.

After a week of this, when we came home we tried letting her make her own breakfast. We put the cereal out, and a bowl and spoon. Except for school days she has always got up before anyone in the house. So when we came down on weekends we found the scattered remains of breakfast. Bowl on the table, the dirty spoon next to it. Crumbs on the bench and a puddle of milk next to that. We realised then this was going to take a little practice and patience.

We also did some practical things to help her: we bought a small carton of milk. She was still a junior school then, and so a large carton of milk was too heavy for her to control as she poured. This is probably the way to go for all children without a lot of core strength, or even having a pre-poured small jug of milk left in the fridge with just the right amount in.

Another thing we perfected while on holiday was getting dressed. There’s ample time and plenty of opportunities as we change from clothes to swimming trunks and back again. It’s also a chance to teach modesty if your child is not as aware as you would like them to be.

Maybe if you’re camping there’s a chance to learn to ride a bike. Balance issues is often a challenge for children with additional needs. I, or should I say my daughter and I because it was a marathon for her too, spent many hours teaching her to ride. Follow the link for our download explaining the steps we went through to solve this. Learning to ride sometimes takes time and perseverance.

On holiday are other skills older children/young adults can develop too. Going to reception if you’re in a hotel and asking for more towels for example. I think that hotels are a relatively safe environment to let my children wander to experience being away from us alone, but that is your call. Independence can’t happen without us letting go to some degree.

If that’s a bit more than what you feel they are ready for, going across to the café for a cold drink while under your watchful eye from the pool might not be. This could be their chance to stroll , get distracted, take forever so whatever they’re buying for you is cold by the time they arrive back – perhaps it’s better to ask for juice rather than coffee.

But seriously though, holidays are a good time to practice independence skills. You aren’t in a rush. Sometimes we do more than we should, and on holiday could be a good testing ground to see what we can stop doing for them, because we aren’t trying to get out of the door by 3 minutes past 8. The benefits of them developing greater independence skills are for the whole family. Other children won’t feel a sibling is being given more attention. You will have more time.  Your child will feel just that little bit more independent, more grown up. In Breaking Bad Habits I talked about the habit loop. We all get stuck in our habit loops, so let’s use holidays as a chance to break some of them. Good luck!

To easy the stress of the travel, Vicki in this week’s podcast Happy Holidays gives useful suggestions on how to cope.  Vicki is a travel consultant, as well as a mother to a child with additional needs.

Is she safe online?

My daughter is safe on the internet. I know she is. I have set up the parental controls and keep an eye on her to see what websites she’s on. I get a a report each week detailing her internet activity. Yes she is safe. Or so I think so…

The ‘A Brush with Authority’ podcast has made me think about crime as it might affect my daughter. She doesn’t go out on her own into situations where she could get into trouble at the moment. So it is online where she most likely to get into trouble.

For us internet time is after school, after homework, after dinner. We have a routine. She has ‘alone’ time, code meaning she’s fed up with us. She has time on her tablet near us but not always with us in the room the entire time. Nothing unusual there.

But what does she do in her internet time. I know it’s not Facebook or other social media because we haven’t set her up on any of those yet. Like all our sons and daughters with additional needs she is vulnerable. Grooming is our chief concern, as for any parent. Yet I think it’s more than that.

She does not always split fact from fiction. She takes things literally, so ‘hit the road’ in our house can mean exactly what it says. This not always understanding language in the same way as peers her age means she doesn’t always know when something isn’t right. Some content posted online is simply not true.  The written word can lie just as easily as a politician can manipulate the truth.

Add as friend imageA few years ago she was on the Moshi Monsters virtual community and someone befriended her. Nothing strange there except their user name was offensive, certainly not something I could write here. Anyone with a better understanding of language would have known this slang term was racist. The website dealt with it very quickly once they knew but it certainly made us extra diligent.

So now we do check her internet history, and pretend to return something to her for the price of a peak to see what she’s watching. Usually not revealing much. Usually vloggers. Two girls, cooking pizza. Nothing dangerous there. But what if…

I don’t think she’d tell us straight away at least. So I’ve started to look outside for advice on how to make her safer online. Some of the websites we have looked are on our online safety page.

The National Crime Agency in the UK suggests 3 steps:
1. Create a family contract. Decide boundaries so it will be easier to keep our children safe.
2. Make sure they know how to get help. Tell them who they should speak to if not yourselves when something upsets them. If they receive an attachment of any sort they should not open it but speak to you first.
3. Continue the conversation. Speak about who their online friends are, and how they be online friends to others. Help them discover websites they enjoy. Discuss the difference between ‘public’ and ‘private’.

Clearly with rule 1 we set this up. Our daughter has her alone time but we limit it. But we don’t tell her what sites she can and can’t visit but we limit these through the parental controls. This contract idea is good, but it’s not always easy to implement it.

Rule 2 might include looking at resources such as the Thinkuknow website. The idea is if children look through this website, they will know how to report problems or concerns to the right people. While this is sensible advice, I’m not sure I want to cause alarm by going to this website more than once to show her it is there. I think I’d prefer the reporting to come about through the next rule.

Rule 3 could be regarded as ironic, especially as teenagers make it their purpose in life to not listen to parents. But for me this one is the key. This is where I can share some interests with my daughter and speak about things other than ‘how was your day at school today’. I’m going to try this one more. Perhaps we might discover we share a liking for Morris dancing, sheep dog trials, or country music.

Many of my thoughts this week have been about crime, hence the internet. Ian in his podcast, made me understand how difficult it is for our young people to report crime if they are afraid of figures in authority. He has made us think we need to do more to help our daughter with this, because it will be the police she will need to call on if she ever does get in trouble.