All Things Autism - Neeraj Sharma, Daisychain Charity.mp3 ========================================= Speaker 2 00:00 - 00:17 Hello, this is Anna Kennedy. We're talking all things autism and we're still in the middle of lockdown. So my guest today is the CEO of Daisy Chain, Neeraj Sharma. And before I go to Neeraj, just to give you a little update about what's been going on. Speaker 2 00:17 - 00:48 So on Saturday, I took Angelo to the Snow Centre in Hemel Hempstead. What a lovely place it is. I have been before and what the aim for Angelo and I is for Angelo to get on some skis and to go skiing. So they have an organisation called Snowbility at the Snow Centre which is run by Richard Featherstone and I have been watching children and adults on skis and some of them have taken a little bit longer than others but it's such an amazing place. Speaker 2 00:48 - 01:33 and even if you don't want to go skiing you might like to go there for a spot of lunch you can watch all the skis through the window it's like being on holiday it's absolutely amazing so if you want to check it out it's called the snow centre and it's in Hemel Hempstead and obviously we can't go at the moment because it's going to be locked down very soon so but I'll definitely be taking Angelo back and I'll keep giving you progress of how he is getting on. It took us a little while to get him into the building because obviously it was somewhere new he'd never been there before but then when we sat down and we ordered something to eat he started settling down and then he was mesmerized by the snow and all of the skiers so that's something if you're interested and you live in that area for you to take your son or your daughter too. Speaker 2 01:33 - 01:50 We'll also be sharing the winners of the Christmas card competition. We had so many entries in. They were digital, they were sketch, they were 2D, they were 3D. So we're going to be choosing two more Christmas cards to add to our pack. Speaker 2 01:50 - 02:22 And last year, the lovely Harvey Price designed some of our Christmas cards. And also Patrick, he designed some of the Christmas cards. So we'll have six Christmas cards in a pack. If you're interested we've just created a little shop on Anna Kennedy online where you can buy the Born Anxious t-shirts because we work in collaboration with Kelly who is a mum who's got a son on the spectrum and she basically has created this fantastic range of disability-friendly t-shirts, Speaker 2 02:22 - 02:45 jogging bottoms, caps, backpacks, you name it, it's on there. So if you want to check it out, that's www.bornanxious.co.uk. And another piece of amazing news, our amazing ambassador, Sienna Castellon. She is one of three finalists for the Children's International Peace Prize for her neurodiversity advocacy. Speaker 2 02:45 - 03:43 How proud are we? of Siena and we'll hopefully be hearing the results of who's going to be the final winner because there's only three people that have been shortlisted so keeping our fingers crossed for Siena and if you want to check out Siena's website it's com and it's to mentor bright students with a learning disability and autism and basically she launched her neurodiversity celebration campaign which encourages schools to recognize the strengths and talents of children with special needs instead of focusing on their weaknesses and difficulties and so far 350 sorry 340 i'm sure it's probably 350 now since the last time she wrote this article Schools have actually signed up and over 314,000 students took part in the first ever Neurodiversity Celebration Week across the United Kingdom, United States and Australia. Speaker 2 03:43 - 04:12 Lots of information on our charity website about Siena. So that's www.annakennedyonline.com. So my guest today is the CEO of Daisy Chain, of which I am a patron and have been probably about five years now. And it's from Yeah, from my hometown, the North East, because my mum and dad are obviously still living in Middlesbrough and my sister and the centre is amazing and it's in Stockton. Speaker 2 04:12 - 04:27 So Neeraj has trained as a solicitor, spent the last seven years at the helm of the Citizens Advice Bureau in Darlington and has been able to bring his skills, knowledge and talents to Daisy Chin. So welcome Neeraj. Good afternoon. Speaker 3 04:27 - 04:30 Hi Anna, thank you for inviting me along today. Speaker 2 04:30 - 04:50 Oh thank you so much for taking the time out because you're probably a busy bee as everybody is and trying to think of different ways of getting the word out with our charity. So before we talk about autism, before we talk about the charity, tell me a little bit about yourself so our listeners can get a snapshot of who is Niraj. Speaker 3 04:51 - 05:30 Well a little bit similar to yourself Anna. I was born and brought up in the northeast of England. My parents are of Indian descent but were the first generation in terms of, you know, myself and my three siblings were all born in Darlington so very much, sorry, very much northeast raised really. So my background really growing up in the northeast of England has been very varied in terms of I've had the opportunity to work in the locality but also nationally working in London and working you know right across the country really in different different guises. Speaker 2 05:32 - 05:36 Wow so have you got any children yourself? Speaker 3 05:37 - 05:48 I have. We've got two boys who are, it's going to make me sound really old now, but two boys. One's 23 and the other one is just gone 20. Both of them are studying medicine. Speaker 3 05:49 - 06:14 Wow. Actually in Newcastle. So I've got one in year, fifth year of medicine and one going into the second year. But as you can imagine with everything, all things COVID, you know, there's a lot of work in respect to being in and out of hospitals and the activity that they've got, obviously working in very, very difficult times. Speaker 2 06:15 - 06:49 coping in different ways. I noticed with the charity a lot more parents are ringing in and sometimes it's not that they want advice they just want to chat to somebody, they just want a listening ear. I've spoken to quite a few autistic adults as well online and on the phone and some of them are saying to me it's not really that much different you know I spend most of my time at home anyway or you've got at the other end where they want to go out socialising and they want to go out with various their friends and whatever it is that they're up to but it's obviously difficult and everything's so restricted. Speaker 2 06:49 - 06:55 So what's it like in Middlesbrough in the North East and how are you coping? Speaker 3 06:55 - 07:30 pre-lockdown so lockdown number one we were predominantly face-to-face services so all of our services are face-to-face and for our team kind of telephone support in a big way was a bit of an alien concept and our care team would have argued probably you know to the blue in the face that it wouldn't be the right method of support. The lockdown that we were last we couldn't, you know, leave families and children, young people and adults abandoned without any support services. So what we did, we launched almost telephone support, but actually virtual support at the same time. Speaker 3 07:31 - 08:25 So that's involving a lot of activities around Zoom support groups, opportunities for young people to come together in a social environment via Zoom, um and to really just to talk about what lockdown was meaning to them in addition to that we also had to do we dealt with a lot of families that were um really struggling in lockdown and were in crisis because there you know there is you're right there are two skills of thought there will be you know some people argue actually for their young people lockdown you know might have been a nice experience because they quite liked being in their home environment and actually all the work that they've done over the years to try and get them to communicate, to be involved with the greater community has kind of been undone by lockdown and it's almost a harder proposition to get that young person to leave their bedroom and actually engage with the world. Speaker 3 08:25 - 09:23 So it's been mixed in terms of what the feelings of lockdown have been, but I think one of the key things or the key differences is that this lockdown, at the same time, mum and dad are home, all siblings are also home, overload with the home, which formerly, you know, there might have been areas where they had a safe zone or they could escape to, it's a very over, you know, a place where they don't have sensory separation. So we've seen that that's been one of the many issues that have come forward via the last lockdown. And actually coming out of lockdown, I know we're going back into another, one of the major issues have been around young people feeling unsafe, issues around you know some of the news that young people have been watching and then the fear in terms of contracting COVID and the Speaker 3 09:23 - 10:03 need to sanitize and wash hands and leading to a whole host of new anxieties and new issues which are actually really impacting on their mental health and well-being. and that's something that we've seen coming out of lockdown. I think one of the great things for us is that we ran a summer program and it's a really good way that our young people could actually you know re-engage in support services but pre the return to school and the feedback that we've had from the schools in September was that for those young people to access that support the transition from lockdown back to school was so much easier. Speaker 2 10:04 - 11:00 I think we're lucky as well weren't we with the weather in the first lockdown we actually had decent days you know sunny days but now obviously it's winter so different kettle of fish really. Weather hasn't been too bad last you know a few days or so but I think when it starts getting colder because I know with my son Angelo he likes to go walking and we go to various parks and for him the difficulty was seeing that oh I can't go to the cafe or the benches are not out they've taped them all up you know what's that all about that's not what it normally that's not what we normally do so it's getting used to changes all the time yeah and then also not wearing a mask you won't wear a mask so with born anxious they've actually created these t-shirts now and jump um what you call them uh sweatshirts and things and basically on it it says mask exempt please be kind so um it's just different ways or you could carry a card i suppose Speaker 2 11:00 - 11:11 is there any have you got any cards at daisy chain if people listening in that if they live in the northeast that maybe they could get them through you or do you know where you can get them from yeah absolutely i mean it was some of the things that we did you know um Speaker 3 11:12 - 11:52 coming you know coming out of lockdown in terms of you you're absolutely right because there is a lot of stigma and sometimes people were reporting particularly young mums that they you know were approached by complete strangers in the street and had to have really difficult conversations or had to try and explain themselves which actually added to the whole anxiety of that shopping experience or that community visit. So it's one of the things that we've been looking at. We haven't, I think the initiative that you're talking about there is fantastic Anna about the t-shirts and sweatshirts because the problem that we found with the cards is that you know it's not immediately visible, you have to actually physically present the card to someone so I think that Speaker 3 11:52 - 12:25 initiative that you're talking about is certainly something I'll bring back to our team. Okay that's great. Because I think more and more families are particularly coming out this second lockdown hopefully as we go into it, it's going to be so important because you're right you know you were talking about young people and you talk about Angelo there but you know even for our young people it's so very hard for young people with autism to move to move into employment and they face so many barriers but one of the major barriers is obviously oh sorry one of the adjustments is routine and public transport but with the last lockdown obviously you'll see it Speaker 3 12:25 - 12:46 more in London the loss of their public transport and that disruption to routine for those that are traveling to work and that are permitted to work it really impacts them in terms of the young people in terms of you know just that the stress levels and the anxiety levels that many young people are facing just trying to get to work. Speaker 2 12:47 - 13:20 I know and the changes as well like for example Angelo when he goes into college before he goes into the actual college you know they take his temperature so there's all these different things where you know it's just little changes like that can really cause triggers as well to upset for our sons and our daughters and the other thing talking about those sweatshirts there are a lot of them that would wear them but then you've got adults who might think I don't want to wear that I don't want to draw attention to myself so you've got to you know find different ways and think out the box all the time to protect our young people as best as we possibly can. Speaker 3 13:21 - 14:22 Yeah absolutely and you know one of you know one of the things that we've got to think about move you know coming into the second lockdown from Thursday is that really don't know whether it'll extend beyond you know December into the Christmas period and it's the issue of food as well and again thinking about you know that some of the sensory issues is that for many for many young people and for many children that in terms of shopping I'm not trying to encourage people uh rush out and you know panic buy but it's really considering the sensory needs of food and just making sure that we've prepared as we go into Christmas that we've got in our supply base those elements of food which you know last time I know a lot of families were reporting that you know people would panic buy for pasta but for seeing young people that really could only eat pasta and softer materials or softer food types it suddenly meant that some young people were facing issues where they were refusing to eat So it's just really thinking ahead really about some of the food sensory needs and again Speaker 3 14:22 - 14:32 you know don't need to panic buy but that bit of planning about what food sources you need to stock up in your cupboards is pretty important at the moment. Speaker 2 14:32 - 15:27 the one thing that I remember from the first lockdown was that obviously McDonald's wasn't open and a lot of our kids liked their chicken nuggets and chips and there was just like parents asking please can you let me have some chicken nuggets and chips and then someone discovered I'm not sure how true this is but corn nuggets actually taste quite similar so they were um they asked if they could have some of their boxes and they were putting them across nuggets in the box so the child would eat the chicken nuggets thinking it was a happy meal so this is the type and then I've been asked so many times to share things about tins of some spaghetti hoop things apparently that they couldn't get hold of or whatever it was and it was like Anna please can you share and then people would come together and say oh I've got some I can send you some so that's the thing I like about the social media as well I know there's a lot of negative aspects as well but the autism community they do tend to come together and support each other. Speaker 2 15:27 - 15:36 So let's talk a little bit about Daisy Chain as in why it was set up because people listening in might not know why Daisy Chain was set up, what's the background behind it? Speaker 3 15:37 - 16:45 So Daisy Chain was set up on the concept of a lady called Leslie Hanson and her husband Dwayne uh they had a a son called Jacob and they were really shocked by the lack of facilities and support for young people with autism um and effectively 15 years ago in the northeast of England you know there literally was nothing uh in terms of the support that was available and they very much wanted some opportunity for young people to have a place a safe place where they could actually seek out respite both for the parents but actually the children got to be themselves without any stigma without any any any barriers to um their kind of support needs and where they just felt that they were in a if you like um a safe space so it was it's a really interesting story in terms of you know Des Chen now is um six you know 16 years later is a large charity that brings in over 2 million a year and supports about 3 000 people but when we first started 16 years ago they didn't even have you know um any accommodation or any premises Speaker 3 16:46 - 18:02 and just on the benefit of Leslie Hanson who was our founder who essentially went from different rotary group to rotary group to church group to church group and really spoke about what the needs were and what her vision was to create a very safe space with an animal petting zoo and a sensory support service and a respite area that we had the land donated to us by a group which was the Dickens group who, if you like your precursor to your B&Qs, they donated essentially was a brown site with their old farmhouse to Daisy Chain and from there in those 16 years just from the community and from business they've been able to have the land transferred over to us as a charity. and to build this wonderful site of 5.5 acres where we've got animal petting zoo, creative spaces, sensory rooms, outdoor sensory areas, horticultural centers and a real place that families and children can come and access the support they need without any stigma. Speaker 2 18:02 - 18:34 And I've seen a big difference only in the last sort of five, six years that I've been coming to visit and you know the outdoor area that you've got like there's a trampoline outside and obviously the animals then you've got adults on the spectrum who either volunteer or working at the site so it's such a lovely place to be and it's obviously founder and that she would have been so proud of what's been achieved there. It's such a lovely project. Then obviously you've got the shop, the big shop, so tell everyone about your shop. Speaker 3 18:34 - 18:57 We do. Another part as any charity and particularly more so than ever now is that we, without an income source, we decided to venture into social enterprise. So about five years ago we set up a charity superstore, the first of its kind selling everything from textiles to brick and brack to furniture. It's 15,000 square foot. Speaker 3 18:57 - 19:27 It's a very busy centre. We receive over 300 bags of donations per day. and we provide employment opportunities for young people with autism and placement opportunities there. We also have a coffee shop that actually runs from the centre and uniquely for the very first time during lockdown we've launched our own high-end kind of vintage and designer online store which is called daisychainstore.co.uk. Speaker 2 19:28 - 19:29 Is that currently running now? Speaker 3 19:30 - 20:26 It is yeah we launched it a month ago and we've got so if you if you log on that store on daisychainstore.co.uk there's opportunities to wherever you are and we I think we just made our first um sale to the Netherlands the other day and uh it's been really interesting I mean it's very different from our day-to-day store because the items have been hand-picked by the team of volunteers and staff members that are working in the design area and really focusing on design and we've also you know launched our depop range as well but the exciting thing is that you know in these really hard times fashion doesn't have to be expensive and you know it can be sustainable on every single penny that we know we raised from this initiative is ploughed back into autism services so it is a really sustainable model and yeah something that we've been uh really excited about during lockdown. Speaker 2 20:27 - 20:34 So can I ask um has lockdown impacted on funds coming in or volunteers or the workforce what what's been happening? Speaker 3 20:35 - 21:13 Yeah I mean lockdown has been a massive impact for us we you know overnight we went from really successful charity that was doing really well so I think when I took over two years ago we were struggling when I took over two years ago and I had to look at bringing about a whole raft of changes about adult services which I'll talk to you about in a moment but in terms of children's services we really needed to make sure that we had a viable superstore. So I've spent a lot of time building the superstore up to the levels that we currently are. But obviously going into lockdown, that meant closure of our store. Speaker 3 21:14 - 21:27 During closure, we were set to have lost 400,000 for the year. Wow. So, you know, that's, you know, 20% of our overall income, so it's massive losses. So it's a bit of a double-edged sword. Speaker 3 21:27 - 22:07 On the one hand, if you look at anybody looking to go into the world of charity, previously, you know, Daisy Chair would be held up as an exemplar, if you like, in terms of, you know, here we have a charity that's generating its own money, but actually it also becomes a challenge as well, because where your income is self-generated, if you're suddenly hit by an epidemic, you know, that we've been hit by such as this, you're forced to close overnight you suddenly lost that income of which you're not insured for and there's just no way that you can recover those losses so it's been hence the reason that we really started to look at the online trading as an opportunity to kind of weather any future lockdown storm. Speaker 2 22:08 - 22:12 So has it affected morale amongst your organisation amongst the staff? Speaker 3 22:12 - 22:26 Do you know what? I would say not, to be honest. I think the staff have really risen to the challenge. They have been kind of quite creative and innovative about the way that we provide support. Speaker 3 22:26 - 23:27 been really good at kind of challenging it's been a good opportunity to challenge why we've done things in a certain way because you do like any charity you get used to you know providing support and you think that support is well received and well regarded so you get into a routine of providing that support but then if you start removing some of the building blocks and it becomes impossible to deliver certain items you then start to question was that delivery correct in the first place and you start to come up with lots of innovations and different ways of working and I would say our staff have responded really really well you know even coming back for the summer period where staff were also anxious about Covid as well a lot of them are really I would say you know 99.9% there are people that do struggle of course with mental health but I think the key thing has been really open with them in communication, sharing what the challenges we've got financially and sharing the challenges that we've got some of our young people have we've also the easy decision that we could have done Speaker 3 23:28 - 23:49 would have been to furlough our staff and we didn't do that we kept going through Covid and I'm so glad that we did because we supported over 3,000 people through the call system just through lockdown so it's you know and professionals so I think the morale at the moment obviously leading into this next lockdown is going to be the question has been good. Speaker 2 23:50 - 23:53 I think the people in the north are tough cockies anyway Speaker 3 23:53 - 24:38 Absolutely Anna, you know that more than anyone. Very resilient and very, you know, there used to be a joke that I once worked in London and I remember, so I worked for Citizens Advice National on advice and debt and I remember you know, doing a radio show and somebody was asking me a question about the move of the North East to London and I kind of made a joke that, you know, if I'd fallen off a, you know, a bus, getting off a bus in London, central London, you know, I'd be lying there for, you know, a day. But if you fell off a bus in the North East of England, you'd be invited into somebody's house, you'd have fish and chips supper, you'd know all the family members and you'd be getting cards every year at Christmas time. Speaker 3 24:39 - 25:02 different environment really. It's a lovely place, it's lovely London as well but I think there is something distinctly special about the North East and about the resilience as well and you know in terms of some of the hard times that people are facing. I mean it is you know the area that we live in you know it's some of the most deprived wards in the whole of the country really, the areas that we operate in the North East of England. Speaker 2 25:03 - 25:41 I was saying to my staff and volunteers that when I went to the shop for the first time, when I came back, I said the amount of stuff that's been donated, I said the people in the north are always generous, even if they don't have a lot, they will try and give you something. that I would that's the bit for me that I was overwhelmed when I went there the amount of stuff that's been donated to you I think I was chatting to one of your girls and they were saying sometimes you have too much stuff and you just don't really have time to filter through it so to be honest with you that has been the major challenge so coming out of lockdown we we had to have um police control Speaker 3 25:42 - 26:12 you never see anything like it because I think like everybody, I bet you did it as well, we all did it, when you went into lockdown you're looking around your house and you're thinking why do I need that? So basically everybody decided to declutter and then obviously the added complication with Covid we have to put everything into at that time 72 hours worth of kind of isolation so anyway it was a real challenge trying to keep up with everything uh trying to to manage that process through but we got there we got there. Speaker 2 26:12 - 26:14 So have you had any government intervention? Speaker 3 26:16 - 26:55 Yeah I mean from a government perspective the intervention has obviously been the the furlough scheme you know the the furlough scheme I have to say has been a godsend really because I think without the furlough scheme not just as a lot of charities would just simply would have gone under they wouldn't be able to afford to continue um so that has been really really important and is going to be important going forward. It doesn't, as I've said, you know, we can't use it completely because we have families and adults to support that we, it's not as simple as saying we're going to follow all our employees. We, you know, I would say that providing autism services is providing crisis support. Speaker 3 26:56 - 27:48 If we don't provide this support in the world that we all work in for autism, this will mean that more and more young people and adults will fall into crisis which ultimately puts more pressure on the NHS and we're going to support the NHS and I think this is one of the hard things about a charity, I don't think we get enough support for the work that we do because the work that we do means that frontline NHS staff can work with COVID patients instead of being directed to acute mental health support and I think that certainly the feedback that we've had and we've had a lot of safeguarding issues that come up during you know, during lockdown as well. And, you know, the support that we've been providing to families with, you know, everything from, you know, creating social storyboards to help, you know, people, you know, deal with everything, even dealing with, you know, a family member that passes away because of Covid. Speaker 3 27:48 - 28:04 And I think um yes we've had the support back to your question and it's been good from the government but I think there needs to be some special recognition of autism services of how we're supporting the you know the NHS with with mental health support Speaker 2 28:04 - 28:07 Yeah, I think furlough's been extended now, is it till December the 2nd? Speaker 3 28:08 - 28:09 It has, yeah, it has. Speaker 2 28:09 - 28:39 Apparently it has to stop and that's law that it has to stop, so I've read, not sure, because some of this, some of the stuff that's coming out, you know, obviously news-wise, it's all very disjointed and mixed messages and I said if the news came out from the government that how you speak to people on the spectrum nice and clear and structured that I think everybody'd understand it more it's just this one pick one or is it Wales is doing one thing Scotland's doing something else Ireland is doing something else and it's just like it's very very confusing. Speaker 3 28:40 - 29:43 Yeah no I completely agree with that and I think it's that lack of consistency and the constant news updates as well so you know you will hear a Scottish news update you'll hear the Welsh news update and then you'll have your area-wide local update also It is a source of much anxiety for many people, but obviously someone with autism and definitely our adults. Obviously since I started two years ago, one of the things that I noticed coming into Daisy Chain is that we provided support for young people transitioning to adulthood, but not enough. So I changed our charity rules, which we call Memenarts, to allow us to support adults um and yeah so we now provide uh extensive support helping adults to either move into employment but with independent living skills everything from you know enterprise for young people that can move into Speaker 3 29:43 - 30:08 enterprise to support with with female focused support such as um you know um anxious girls group that we run on an evening and then more recently we're starting our equalities group where we were creating a daisy chain committee which is user-led from our young adults with autism where they will look at equalities based in daisy chain to make sure that we are really operating at the forefront of equalities. Speaker 2 30:09 - 30:17 Okay so with reference to Covid as well have you had many members of staff that have actually been diagnosed and had to quarantine? Speaker 3 30:18 - 31:16 We, yeah, we, recent, it's obviously attached to recent, you know, figures. Last week we had a staff member who came down with COVID based on a community-based infection, but as a precautionary measure, what we did, we contacted, we did our own internal track and trace basically, essentially, Anna, and we, um isolated the staff members who had worked with that staff member and we contacted the children that had been with that staff member to a different point within the last fortnight and we put their parents on awareness and since then we've had another staff member so we've got now two staff members with that have had COVID uh within you know children's service children and adult services but you know like anything we we've worked with Public Health England and we've worked with um with our local councils to make sure that we have done everything that we can to make sure that we create that safe environment Speaker 3 31:16 - 31:43 here at Daisy Chain and we're continuing to do so. Even as we move into the new lockdown now we are going to continue to do educational placements and one-to-one support so that will just continue to provide that support. Obviously like what's just happened to us if we didn't have know staff members that God we just have to work around that unfortunately I think that's going to be the new reality for whatever wherever you work that is a new reality for the until we find a cure. Speaker 2 31:44 - 31:54 Yeah with reference to businesses in the northeast do you think they're receptive towards either providing a work experience or jobs for our adults? Speaker 3 31:55 - 33:02 I think they are, I mean we've had some really good successes so we've been working with employers to kind of change the rhetoric, most recently you know I have kind of been talking to employers around really making sure that they are creating an equal platform so you know stereotypically if you know if somebody with autism that goes to interview you know there may be there may be a barrier facing them at the actual interview in terms of not recognizing that that young person has got autism and therefore someone who's neurotypical might have the edge over them at interview because they come across with greater communication skills however the person that actually would have been better at the job, you know, an IT job or whatever that job might be, might have been the individual with autism. So we've been having the conversations with employers about actually employers are missing out on autism talent and they should really be working, you know, in a more considered way to make sure that they access the very best autism talent. Speaker 3 33:02 - 33:24 So how we've done that is that we've been working with employers to train the employers around their recruitment practices, but also to train the employers to actually take young people on as placements. So it means that we've placed, you know, several young people in the last few months with employers, but also provided the very first apprenticeships? Speaker 2 33:25 - 33:41 I think apprenticeships are great I really do because obviously they're still going to get some money obviously for working but also get the training at the same time and it's experience so for me I just think we should be doing more and more apprenticeships because I just think it's such a fantastic thing. Speaker 3 33:41 - 34:24 I think we should be I mean the other thing that employers should be doing they should be looking at the government kickstarter scheme to make sure with the government kickstarter scheme they should be including you know well, opening up the Kickstarter programme so that they include, you know, charities such as Daisy Chain that are working with young people with autism that have got immense talent should be given the opportunity to join that Kickstarter scheme. So I think it's something that, you know, we've been talking to Jobcentres, Jobcentre Plus and the Regions Employer and, you know, ultimately the Tees Valley Mayor to try and ensure that that, you know, there is that unfettered access and that, you know, young people with autism, I just don't think it's acceptable that some of the barriers that we see, they're in place. Speaker 3 34:24 - 34:29 are still there, not in 2020 and we really need to push and do more. Speaker 2 34:29 - 34:59 Yeah, my worry is because so many people are losing their jobs now, like we're just hearing about it every day, that it's going to be harder for our autistic adults to find work because you know you're hearing about things like oh 600 people are going for one job or you've got a thousand people going for another job and that's for me, that's my worry. that our young people are going to be finding it even more difficult to try and find a position in the workplace. Speaker 3 34:59 - 35:34 Yeah I completely agree and I think that's why that these initiatives such as apprenticeships and kickstarters we should be really open about young people you know if young people are happy to do so about the fact that they have autism and they should be making adjustments and they should be the employers or the recruitment team need to go on autism awareness training so that they can ensure that they are asking the right question and they understand that the, you know, the responses that are coming from the individual in front of them. A lot of employers now are moving to a position where they, you know, they share the interview questions with the applicant before the interview. Yeah. Speaker 3 35:35 - 36:07 Such a good idea to kind of put the young person at ease, but also give the young person to the opportunity. question beforehand. You know, I often say, you know, we will often say that somebody with autism, they, for project planning and detail and consideration and structure, you know, they can achieve some fantastic things for employers and employers just need to understand how to access that support because they've got so much to give and actually could possibly, you know, many times outperform the candidates they're actually employing. Speaker 3 36:08 - 36:16 um because they've employed people just on how they performed an interview with communication skills and I it's it's just a barrier that we need to overcome. Speaker 2 36:17 - 36:29 So if someone's listening in and uh they're you know they've heard that you um offer volunteer opportunities or possible positions uh do you have any vacancies for volunteers that you know if they're living in the northeast they might like to apply? Speaker 3 36:29 - 37:25 Yeah absolutely we've got a load of vacancies which are on our website we've just recruited new volunteer manager Adele and should be happy to hear from any of you that were looking for volunteer opportunities. Everything from upcycling, fashion and textiles, coffee shop, working with animals, working you know within our one of our polytunnels so that you can actually develop horticultural skills or you know the skills necessary that you can go on and either go into college if you want to go on to further education or access work through our employability and placement skills so there's lots and lots of opportunities across Daisy Chain in a whole raft of things and obviously our most recent one is our e-commerce so we've got a couple of young people have joined us for our e-commerce team and they who are very keen on photography to be involved in photographing items. Speaker 3 37:25 - 37:58 We did a photo shoot during lockdown there was an opportunity for young people with autism to take part within that photo shoot either as models or as part of the team that are putting together the looks, picking the outfits, describing the outfits whole host of things on there that they can be involved in so I would say the message is you know go on our data chain website and you know email our team either email adele at data chain and or you know email myself and I'll happily pass on your details to the relevant person. Speaker 2 37:58 - 38:05 Thank you so have you got the website address and if they want to follow the group on social media could you share that as well? Speaker 3 38:05 - 38:58 Yeah absolutely so if they want to contact us it is daisychain www.daisychainproject.co.uk that's our site and if they want to email myself they can do i'm quite happy and i'll pass on the details it's niraj n-double-e-r-a-j dot sharma at daisychainproject.co.uk email me and i'll pass on your details to adele she'll happily pick up anything that we need to and pass your information on and don't feel discouraged if you're sat in London you want to volunteer for us happy to hear from you happy for you to join our growing number of people that are involved and love fashion and want to be involved in our e-commerce team you know that don't let the distance you know discourage you from joining in as a volunteer. Speaker 2 38:58 - 39:07 Oh thank you and if there's an adult feeling that they might like to talk to someone or feeling in crisis would they still contact the website? Is there a contact form? I'm sure there is on there. Speaker 3 39:08 - 39:24 There is but they can also give us a call. We've got a free phone number which is, are you okay for me to share this? Yeah absolutely fine if that's all right with you. Yeah yeah absolutely that's 0800 031 55443. Speaker 2 39:25 - 39:28 Just say that one more time in case they didn't have a pen handy. Speaker 3 39:28 - 39:36 So that's 0800 031 544 3. Speaker 2 39:37 - 39:57 Thank you. So if you feel that you might like to give Daisy Jane a call or you want to chat for some advice or you're looking for some ideas for work experience even, I can definitely recommend Daisy Jane. I've been there. Everyone is passionate about what they do and it's such a warm and welcoming place. Speaker 2 39:57 - 40:01 I'm a bit worried about the money that you've lost. So how do you think you're going to recoup that and is it going to have an impact? Speaker 3 40:02 - 41:03 um it is but before we go on I just wanted to add one thing there Anna is that you know you can also use that line if you're a parent and you're struggling you might not have had a diagnosis yet and you might want we've got a bank of resources including visual timetables and a whole access of self-support including you know some mental health and well-being tools as well so just let you know you if you're a parent too you can ring up and access that support and we will be starting our um parents support groups as well which will be virtual ones on an evening as well as kind of and then you know they vary from um you know information about autism but then there's also friendlier ones and i'm saying friendly ones i meant informal ones around virtual coffee and that's just an opportunity for parents who are not meeting anyone at the moment the opportunity to come together as a group so there's a whole host of things that will be starting now as we go into lockdown number two so sorry Your question about income, yeah, I think, you know, Speaker 3 41:04 - 41:57 it will be a case of really trying to give a further push to our e-commerce. We will be doing more click and collect, more items to be sold online and really looking at, you know, ways that we can recoup. I mean, the other aspect of Daisy Chain is we generate a lot of our income through events and, you know, charitable events, whether it's charitable balls, collection, community fundraisers, Unfortunately with Covid all of those have stopped too, so we've got initiatives and we're doing one at the moment which is a really exciting initiative and it's again fantastic generosity of the North East where we've worked together with a hotel group hairdressing groups, a beauty therapy and car firms and come up with when a wedding scheme and this is this is an opportunity where young you know Speaker 3 41:57 - 42:24 anyone really you don't have to be young anybody who is looking to get married next year has the opportunity to enter into a fundraiser and win a wedding and that's a fantastic initiative which we just launched so we're hoping that that's going to rent you know pick up in them over the coming raise income for us to really just address our shortfall and we're going to have to do more and more to address the shortfall that we've got looming unfortunately. Speaker 2 42:24 - 42:29 Do you think the recession is going to affect the North East? Speaker 3 42:30 - 42:56 Yeah and massively. North East has always been an area where we've struggled jobs wise. It's you know we it's classic you know back from the cold mining days to lots of industry and steelworks, the loss of chorus. We've been battered for a number of years but I think the biggest concern is that the service sector is is one of the largest employers and obviously the loss of the service sector is immense but The other issue for the North East is that, you know, we have Speaker 3 42:56 - 43:29 a lot of, you know, back to the 2007 crash, there was a lot of properties that were under what are called suspended possession agreements. So this is where their mortgage properties, but they've previously defaulted on mortgages. So obviously the concern is that as we start to see the job losses is the correlating impact it's going to have on home repossessions and repossessions in general so you know it is we have got a difficult time in front of us but I'm you know I'm sure as a as a region we'll work hard to try and you know come back. Speaker 2 43:30 - 43:37 And how do you think your charity is going to work differently when all of this is over? Speaker 3 43:37 - 44:16 I think our charity is going to work differently because I think we're more innovative than we've ever been before and more prepared to kind of look at our business plan and our rule book and rip it up and start again and I think that's the way that we have to move forward. We have to be able to embrace partnerships more and work on new initiatives and really not be prepared to do what we've always done and I think we've learned that from lockdown number one and that sounds quite dismissive because we weren't it was not that we were doing anything wrong I think it's just about that spirit of innovation and trying to continuously evolve. Speaker 3 44:16 - 44:52 I mean you know coming out of lockdown one of the things that we have been able to do is bring in funding so we've got extended funding so that the temporary call centre that we put into place previously during lockdown which we did out of our own funds is now funded for a further six months. So I think that's quite an exciting opportunity where we can hopefully extend the range of support beyond Teesside and provide that support across the country. In the last lockdown, we had families calling us just through Facebook from Milton Keynes and Nottingham, and we were really amazed about how they'd actually could stumble across our details. Speaker 3 44:53 - 45:16 So I think it's something that we're going to see a lot of growth of in terms of our telephone support service being manned by individuals who are not just providing triage, so they're not just directing them into other places, but actually are care trained and able to talk about strategies and have the autism expertise. So I think I do see that as our future growth area. Speaker 2 45:17 - 45:29 The last time I spoke to you, a little while back now, and it was at the early stages I spoke to you when I met you last year, you were talking about an overseas project. Is that still on the go? Speaker 3 45:29 - 46:22 It is, I'm currently looking at setting up a community interest company, so this would be separate from daisy chain and how this came about is that we were actually visited by the Cambodian government and they wanted to see first-hand autism services So they came over and they were just basically you know just amazed by what support we provided and this was Cambodian hospital in Battambang and a doctor who's head of child psychologist services who was very much interested in you know developing the support provision around children with autism. So as part of that kind of those conversations, what they did, they invited us as a team to come across as volunteers. So outside of the charity, we went over to see them in Cambodia, we went independently as volunteers. Speaker 3 46:22 - 46:52 Coming back, we presented our findings of what we saw in Cambodia, what kind of support we could provide, Consequently our board were very interested in providing the support and this is not for Daisy Chain to deliver in Cambodia, this is for Daisy Chain to share the information that we have. with the Cambodian people so that they can actually benefit from our learning and they can use our resources and use our information. So it's a shared approach. Speaker 2 46:54 - 47:20 Sounds exciting, so keep me updated on that. I'd like to hear a little bit more about that. So obviously you're a busy bee and because this program is about mental health and well-being What do you do to take time out because I'm always saying to parents that because you know a lot of us parents and carers are linchpins to the family, more so now that you know some of our children are adults they're at home, what do you do to relax for time out to recharge your batteries? Speaker 1 47:21 - 47:35 If I'm going to be really, I should give you the right answer. I think just in general ever did. Speaker 3 47:35 - 48:06 It was the amount of what, I just don't think we were embracing the great outdoors and we really are now, so we're out all the time, we go out on really long walks and it's, you know, the kind of sense, I get probably more reaction out of the dog than I do for my own children when I go home. It's just wonderful just to have that companionship and kind of Always be energized and no matter how bad your day has been, you're met by this wagging tail and this puppy dog when you come in. So that's been amazing for me. Speaker 3 48:07 - 48:56 Other things I would recommend is obviously having a really good sense of humor and having the ability, no matter how bad things are, to be able to actually laugh at yourself. I think that's something that really carries me through every single day, really, is having the ability to laugh at myself and actually being brave enough to talk, even talking to my team, to point out my own flaws or my own shortcomings or something that I might have done that was hazard or silly or stupid. I think that puts everybody else at ease as well because it spreads that, yes, we're living in difficult times which we can't control, but actually we're all human mistakes happen and yet we just have to just just smile and laugh and move forward and I think that's been Speaker 3 48:56 - 48:57 my approach throughout really. Speaker 2 48:58 - 49:02 Yeah I was going to ask you one positive message you could share with what would be but I think you've just answered that now. Speaker 3 49:03 - 49:50 Yeah yeah it is it is absolutely just you know we can't control our environment but we can control how we feel in that environment and if you feel as though it's getting too much and just go out and just you know embrace the outdoors and yeah. and just have that ability to have that support group around you. I mean, one of the things that we've been saying to our adults with autism as a major tip is that as you go into lockdown, think about those people that you call on for support now and make sure you maintain those links via social media or via Skype. Don't let those links disappear because it's really important that you continue those links even though you're not going to see those people on a daily basis. Speaker 2 49:50 - 50:13 Definitely. So we're going to talk a little bit about Autism's Got Talent because I have been to the North East. We came to, actually I've been twice, Teesside University and then we went to the Arc Centre. So we are hoping, keeping our fingers crossed, that we can bring Autism's Got Talent Roadshow back to the North East in collaboration with Daisy Chain. Speaker 2 50:13 - 50:36 But before we chat about that, I just wanted to share with everyone that one of our Awesome's Got Talent performers, Lauren Lovejoy, who was also on, oh, she was on The X Factor. And that was a few years ago now. And she was, I don't know if you remember her, she was a lady that had a fantastic voice and she had beehive hair. She's on the spectrum and she thinks of everyone as animals. Speaker 2 50:37 - 51:05 And she was given on the panel, a name for an animal so Simon, Louie and the rest of them. She's just such a talented young woman but also she's a vulnerable young woman and been bullied in the past even by managers that she's had so she decided she wanted to write a song for anti-bullying week which is in the next few weeks and I'm going to the studio tomorrow to hear her record the song. I'm so excited. Speaker 2 51:05 - 51:36 I said to her how long did it take you to write? She went 20 minutes and I said how long did it take you to write the melody she said oh about the same so I thought wow so she's written a song and the melody in two lots of 20 minutes so I'm going to Wembley tomorrow to listen to her record the song and then we're going to be sharing it in the next few weeks so that's something exciting that's happening within the charity and obviously we'll be raising awareness about our anti-bullying campaign which has been going for quite some time now it's called Give Us A Brick. Speaker 2 51:36 - 52:32 I first launched it with the Anti-Bullying Alliance and the NSPCC and then we've continued to raise awareness so West Ham took it for one year and then each year I give it as a project to our members of the charity so we've had videos created we've had all sorts created every year So this year Lauren would like to write a song and also Watford Football Club they are going to be sending out a message and also support and give us a break so look out for that and within the next couple of weeks and lots of other bits and bobs that we're doing to raise awareness and I know bullying is not about just that week you know we should be raising awareness and what I have noticed as well from many families that have contacted me and adults that bullying is on the increase especially online now because more people are online social media The only things I can say to you about social media on Twitter or whatever is don't engage, just block them because that's what they're trying to do. Speaker 2 52:32 - 52:43 They're keyboard warriors, they're trying to goad you and just tell someone if you're struggling. So I was just going to ask you as well with Daisy Chain, what's your policy on anti-bullying? Speaker 3 52:45 - 53:10 So we work We would love to join your scheme though, you know, we were talking about give us a break, I think that would be a fantastic initiative that we could, you know, forward, be part of and probably have a conversation with you off air, Anna, about that. Okay. Or we could do more with skills. Certainly with the autism awareness, we talk to employers and we talk to schools about this, but I think there's so much more that we could do in terms of joining up with that campaign. Speaker 3 53:10 - 53:53 So that would be something that I'd be really interested to do. Okay. On a day-to-day basis we provide, we just brought a small project in for counselling support, so that support service is designed around working with young people one-to-one around bullying and very much our work is around providing that support, if you like, after bullying but I would really be quite interested in doing more about the preventative agenda, particularly about what we, you know, as you say it's not just a week, it's whole place including the social media platform where people can be excluded as well by bullies in terms of the way that they operate and as Speaker 3 53:53 - 54:08 you say keyboard warriors is something that we've seen on the rise too. So I don't I think we could learn so much from you there Anna in terms of what we could do on the preventative agenda rather than providing the full support which is what we currently do. Speaker 2 54:08 - 54:20 Yeah so maybe next year we could do something together and yeah definitely okay that's exciting so that put that on the on the agenda. Speaker 3 54:20 - 54:28 On my notes here I've written on my agenda to include you in the Cambodia agenda as well so I'll be talking to you about that as well. Speaker 2 54:28 - 55:16 So we spoke, not get my teeth in, you know what Angelo didn't because he's gone back to college today because I kept saying when you're going back to college I don't wonder and his sleep pattern is awful anyway but he didn't go to sleep till like 2 45 3 o'clock so I'm just so tired today but hey ho that's our life and that's how it presents itself with Angela, so we spoke briefly about Autism's Got Talent and for those of you who don't know about Autism's Got Talent, I was actually born from the anti-bullying campaign, give us a break, and then from that people were writing in to me about how they taught themselves how to sing and dance, musicians taught themselves how to play the guitar, either acoustic or electric, set up bands, poetry, actors, you name it, so it's been going now. years next year, so we'll be celebrating 10 years of Autumn's Got Talent. Speaker 2 55:16 - 55:55 It's not a competition, it's a showcase of talent and now we have talented individuals that come to our main show in London that come from all over the world, so I'm so sad that we had to postpone it this year. all of our shows, all our Autism Hero Awards, everything's been postponed, so that'll be happening next year. We've booked for Autism's Got Talent in May and then we've got our Autism Hero Awards, so if you feel that you'd like to nominate someone that goes the extra mile, whether they're a professional, whether they're a carer, whether they're a business, a charity, please nominate them and all of the information is on the charity website under Autism Hero Awards. Speaker 2 55:55 - 56:44 and then the judges, our seven judges, will have the difficult task of choosing three finalists for each of the 12 categories and then the finalists are invited down to London at the Chelsea Harbour Hotel, lovely hotel there, and it's such a lovely evening where there's music, Autumn's got talent performers, a meal, celebrities, it's an amazing event lots of tissues needed because there's quite a bit of crying going on but yeah so that's again on the charity website so if you want to check that out it's www.annakennedyonline.com so we're hoping to bring Autumn's Got Talent to the northeast again because I have had quite a few emails from parents saying when are you coming again it was such a great evening so hopefully we'll be doing it sort of the latter part of the year we were talking about September October we were thinking about weren't we Speaker 3 56:44 - 57:26 Yes we were yeah we were um and we're all the team here is so excited it's just we need to make this happen I know I think uh we've been telling parents as well yeah and everybody is really really excited we're starting a new speech and drama project which is just January so yeah we're all gearing up to I think the crescendo will be autism's got talent so we can bring forth the new Laurens really of the future so people is to go by we've got lots of young people who are promoting autism and you know challenging preconceptions just really promoting autism across the UK. Speaker 2 57:27 - 58:11 Yes keep looking out on our websites it won't be yet but what will happen is that we will be putting out application forms to say if you'd like to enter so then you'll know it'll be definitely be happening and then we'll have the hard task of choosing probably 10-12 performers from the North East and then we'll bring others from across the UK as well so that'll be exciting. Wow we're almost at the end of the show so thank you so much Neeraj for coming along to chat to me and taking time out of your busy day and it's always good to chat to you and hear what Daisy Chain's going on so and thank you also for keeping me on as patron and next time I'm in Middlesbrough when it's not locked down I'll pop over and see how you're all doing. Speaker 3 58:11 - 58:21 No thank you Anna, your amazing help to us as a charity and continue to be inspiration so yeah we've just been honoured to be invited to be on your show so thank you. Speaker 2 58:21 - 58:33 Okay thank you everybody, stay safe, stay strong, keep going one day at a time and support each other please. Alright then thank you, bye Neeraj, thank you so much, bye.