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Now Tess, Kratoo and Polo first perform on Autism's Got Talent in 2019 at the Mermaid Theatre where Kratoo won the hearts of the audience and he won the hearts of the audience at Crofts because he had his own agenda. He was doing everything that he wanted to do. Wasn't listening to what Tess wanted him to do. So Kratoo is a fully qualified assistance dog and Tess his own and loving friend as I said is on the autism spectrum. Been chatting to Tess quite a bit in the last few weeks and after the success Crofts Tess also wanted to do more research into the guarding breeds. He is a cross breed with as many come to the UK and are put back into rescue and sadly put to sleep as there's not enough information about their specific breed and their guarding traits. So Tess shared that she's delighted to be ambassador for Anna Kennedy online and she hopes to bring awareness for autism and assistance dogs to help the autism community understand what is involved with the training, the options of how to train as an owner trainer like herself and or how charities who can help with dog who is trained by them. Kratoo and all of her pets help her with her mental health and autism is something personal to her and she feels it's still we've got a long way to go to be understood. Also want to share another one of my overseas ambassadors which is Paula. So Paula McGowan and she's been working with the National Development Team for Inclusion and they have partnered with NHS England and Improvement to explore the state of learning disability nursing in England today. In January 2020 Paula who's also been one of my guests on women's radio is a campaigner for better health care for people with learning disabilities and autism because as you probably know she sadly lost her beautiful son Oliver and she's asking her social media followers and members of various online groups and forums as a series of questions about the profession. They aim to hear from those with direct experience of learning disability nursing whether as a learning disability nurse themselves, other health and social care professionals, families, carers or other interested parties. So what she wants to do is the way learning disability nurses are trained, the skills that learning disability nurses have, the value learning disability nurses bring to health and social care and how learning disability nurses are viewed by other professionals, families and people with learning disabilities themselves. I was invited to Nottingham about three years ago now to the learning disability nurse conference where there was over 500 nurses there and I spoke to many of the learning disability nurses there and they had been told which I couldn't believe that once they told it could be a member of the public that they were a nurse, a learning disability nurse, they said oh well you're not a real nurse then are you? I couldn't believe that's what they said to them. I was absolutely shocked. So my guest today is Shola Folarin Ogunde, she's a senior education practitioner and also an autism consultant and advocate and a founder and director of Jesse's Players Foundation. Welcome Shola. Hello Anna, how are you? You're very welcome. So before we talk about autism, before we talk about lockdown, before we talk about anything let's share with our public who is Shola. Okay Shola is a mother, I'm a mother, I'm a wife and like you said I'm a senior education practitioner. I was born in the late 60s and at the age of three my parents actually sent me to Nigeria. So I lived in Nigeria from the age of three until I was 18. So I returned to Nigeria, sorry I returned to the United Kingdom at the age of 18 and I've been here ever since but I still maintain strong links with with Nigeria and one or two other countries in Africa. I am a trained teacher, I have been a teacher since the late 90s. I also have three sons, one who's 29, another who's 25 and my baby is 17. Wow. Yes and I've been married, I've been married for over 20 years as well. A lovely man who cannot be here obviously but he knows what I'm doing today. Okay so your house is full of men. Yes I am the only woman and my behaviour is more or less like one of them. I've got trainers and tracksuits to match. Yeah because I have three men in my house so age 30, 27 and obviously my husband who's on the spectrum as well and then I have a little dog called Chanel so I have a little female doggy friend in the house. I've been trying to get one of those, I'm still working on my husband for that. Yeah it took us a little while and we weren't quite sure about Angelo because he's a little bit not quite sure about dog so we thought we'll get a small dog but she was very persistent. Six months she followed Angelo everywhere and in the end she just jumped on his lap and he thought put his hands up but I give in and then now they're the best of friends. I think that's what I'm looking for Jesse as well that we can get one. Yeah 13 years old she is now so she's getting on a little bit. She's getting on a bit yes. So why did you go into teaching? What made you go into teaching? Ah you see this is not the first time I've been asked that question and I am always totally honest when I answer that question. I went into teaching first of all because of the holidays. Do you know what you're not the first person? Yes yes I had already had my two sons and they were quite young and before I went into teaching I used to be a housing officer and I didn't quite like the hours I didn't quite enjoy the politics and the travel and I sat down and then I said I think I'll give teaching a go because I want to be at home with my children during the holidays but then the minute I stepped into teaching I just knew that that's where I should have been and that's why I've been in it for this long you know it's just you being able to have that impact on children you know and their families and you actually being bonafide if you like member of their lives you know for quite a while and you know the relationship you make with parents and because I've been teaching for like I said over two decades and it's within my local area my two older sons call me a legend because if they're standing at the bus stop or driving or they're at a party and you know they could see they're talking about a particular teacher and they just go and say that's my mom you know so it's I think it's a career that I even if I have to come to this life again it's something that I would do I will back to it yeah it's a very rewarding rewarding profession. Yeah so is it primary or secondary or boring? It is primary it is primary yes it's always been primary it has always been primary but then I've been teaching for about about 23 years but 12 out of those 23 years I spent in one school where I was where I was the senior and assistant head and you know departmental head and all that we had an all through academy so from nursery all the way to secondary all the way to sixth form so we get to see our children from babies become you know young adults yeah so yeah yeah so and then I was also on the board of directors for that so I do have a little bit of an experience with them secondary children but I haven't I haven't taught them before in that sense. Talk to me how Covid has affected the teaching profession in particular with what you're doing and how is it affecting the children? I would say because teaching is it's like you know when you're talking about contact sports you know it's a contact profession you want you want the children in the classroom yeah you know you you want to be able to have that eye-to-eye contact with them and have that impression you know that physical impression with them and obviously Covid has you know turned all that upside down and I mean during the first lockdown yes we know that you know the schools were opened to key walker children well not you know not all children you know were in school and then also the how would I put it the effect of Covid itself on on staff yeah you know it's been it's been like a rollercoaster it's been like a rollercoaster and even till now you know we have you can I mean you had to come across my if I'm talking about my school now you had to come across a class that's got 30 children every day you know so it's upside down it's and it's and then if you're now looking at the you know the mental health yeah effects that has had on staff as well as children as well you know so I think this is a time that we've said it many times it is on chatted waters and we are just just doing our best just you know with the children and if you have a school that has that has a management system that's quite sympathetic and you know empathy it's it's not bad it's not too bad okay is there any children with disabilities in your school and how's it affected them because I've spoken to some families where their children still haven't been back to school or college since March that have got a complex needs yeah we do we do have some children that we support they have been in school but then it's it's been a bit difficult because you know we have to you know there are risk assessments in place there are there are certain procedures that probably they used to do before that we can't do anymore you know but we don't have as many as you would find obviously in your mainstream special needs school yeah I know so and we don't we don't we don't even have a unit so we just have you know like a handful of children who were trying to support but yes there has been there has been some effecting or some some some impact there yeah and have you had many families of children whether they've got a disability or not contact you with their own anxieties and how how are you oh oh yes and how you can say in as well well well when the first lockdown started yeah it was it was just like something written in a book yeah you know because I only just returned with my team I just displaced from Nigeria because we went on a training on a holistic training for children with disabilities you know professionals walking with children with disabilities so three weeks after we back in February the whole country was shut down so now we had I've had you know we had parents I've got you know a group of parents that I support as well so I mean the problem there was isolation and also you know being able to have that respite which was definitely you know became really difficult with you know with parents especially parents living in in flats without gardens you know and also being able to be what one thing that we did find was the fact that I'm sure you know about direct payment you know that you know that money which really is for respite so to speak yes you get that money yes in some cases parents actually would send their children to clubs obviously all clubs were shut down yes and because I have a what I would call a good relationship with my social worker because Jess is on direct payment as well so you get a social worker because of that support package she just said to me look you can spend that money on anything as long as it's meaningfully engaging your son I mean really so I went straight onto onto social media told all the parents about a hundred of them and said look and they're not from the same borough so I said you could you could use this money just get something to engage your child if you've got a guardian get a basketball basketball what do you call it net just you know get an iPad get a computer just get anything so many of these people now or parents rather families now kept going to their own local authorities asking them obviously contacting them and saying can we do this can we do this with the money and some of them are like oh yeah oh yeah yeah of course you can let's go find out and we'll come back so you had all sorts of them because no one has actually gone through this before so we also had we had virtual forums and workshops online as well to support parents okay so talk to me about awesome now so before we talk about your son and had you ever heard of autism before before he was diagnosed yes that's that that's the question that um I guess not maybe not many parents in you know in my position could answer yes you know being a teacher my first contact with autism actually was when I was in my second year of teaching okay yes and that was many years many years before I had Jesse never knew what autism was this young man who I'm sure is in his 30s now right me and what he just sat there and he was staring at me I went to my to my head teach and I said that's a strange boy in my class you know he doesn't say anything to me he just sits there and he just looks at me and my my head being a lovely header he was just gave me a book and said go and read this book and I took the book home was about autism and a good number of the classic symptoms that we get from my children he was actually displaying in class okay you know yes so that I knew about that you know about autism many many years before so I started walking with him and and and the mum and you know we tried to get an assessment which was not difficult to get in those days yeah in comparison to now so yes I did know about autism and my my husband is also a psychiatric clinical manager okay you know so he also has a good idea of what autism is so I'm guessing a way we could say that we were I don't think anyone can be prepared but I think we were prepared or being prepared in a way for what was coming we never knew so talk to me about Jesse then so talk to me about his diagnosis and his early years if you don't mind okay Jesse oh well I guess every mother would say about their their son he's you know he's handsome gentle giant you know he can be a tease he's got agile and quite strong yeah he's 17 and he was diagnosed with autism at the age of six okay well like I said you know I kind of had my suspicions about about him before that age okay that we had some we had some particular interventions if you like that we tried to put in place for him before his statement so he he Jesse like I said he's one of one of you know three he's got two other brothers he said he's an accomplished gymnast and yeah he's been attending a gymnastics club since he was a 10 okay and you know he's he's gone for competitions he's won medals he's won trophies you know and but Jesse's autism also comes with global development delay yeah he can't communicate with you he can't sit with you and you can't get that reciprocal conversation with Jesse you know so he's quite monosyllabic in his you know in his communication but he's a lovely endearing young man you know and we just you know as a family we just want to do what we can to to support him we kind of knew that there was something quite unique about Jesse when he was two you know when he wasn't reaching those milestones and he would be doing odd quirky things like you know we're looking for him we can't find him in the room and then when we find him he's on the table you know and sitting there feeling quite comfortable you know yes and not he didn't actually start even to use monosyllabic words until he was six right you know so he was you know very very non-verbal before the age of six and we actually thought like I'm sure some of the parents would have thought we thought there was something wrong with his hearing so to give an extended you know extensive auditory test which he passed you know sorry did he have glue here no he didn't okay he didn't have anything wrong with his hearing at all okay both my boys are glue here and I've spoken to so many parents where their children have had glue here then obviously when the grommets were inserted obviously it improved right Jesse never he never had that now he's in him he attends a school run by the National Autistic Society okay and he's now in he's now in year year 13 okay you know and he's been in that school since the age of 11 okay I'm interested in the gymnastics because obviously parents have talked to me about the children that might be a little bit more profoundly affected than they're looking for outlets for them what made you go into gymnastics and how did you approach the club and how were competitions for him okay now I have to say to you that I never knew about the gymnastics club okay it was actually brought about his school when he was in a not the not the specialist school that he attends now but he was mainstream school that had a very good autism unit okay in the school and the autism specialist teacher suggested that you know Jesse you know Jesse could attend a gymnastics club which is just a mile away from them because they saw the way he was on the trampoline okay so we then got a trampoline at home and we saw that he was just doing wonders on it yeah so now the fantastic thing about this gymnastics gymnastics club and I'm sure that one might be mentioning you know they're called Falcon Spartans they are wonderful they actually have three or four sessions in a day and one session is dedicated to children with disabilities brilliant yes and that's where Jesse you know that's where Jesse you know that's what suited him and that's where he joined you know they've got they've got I mean all the coaches accomplished gymnasts when I retired you know and what they do is after the children have settled with them for a while they start to they start to enroll them in competitions so and it is an international competition so you have other young young adults and children from other countries in Europe coming for this for this competitions so and Jesse's Jesse's specialism within gymnastics is trampolining and then just recently he took up one or two other disciplines within gymnastics and he's been doing that quite well Oh brilliant yeah my youngest son Angelo loves the trampoline and I remember when he was younger he's so sure footed when he's on there and not he's like cuz he's quite profoundly affected he just throws himself no one's taught him how to do it but he just knows what he doing you can see the pure joy well I took him to a club in rise slip and he only had one session and then what happened was the lady who was teaching him who was obviously was able to communicate with him only after one session she broke her knee and she knew after that she was just unable to do anything so she cut she shut the club down I was so good I know my prayer and I and because I am Christian and I I hold my feet there and quite dear one of my prayer points every time I pray is that God will continue to sustain Falcon Spidex because because the coaches are just phenomenal yeah you know and it's not as if I mean it's not like I'm just his older brothers where you know they they were they were having extracurricular activities clubs coming out of their ears you know they could just choose one and drop one and choose one and drop but that's not the case without well you know with our special children you know so this is the only one that Jesse has been and we're quite at home there that's where everything is allowed no one looks at you funny no one judges you you know so I pray for them I pray for those ladies and you know and the the young elderly ladies and the younger ladies who are there that God will continue to sustain them because we need them yeah there's not that many clubs really do really good job working with our children are no there isn't so you mentioned your siblings and your Jesse siblings what's their relationship like one thing I think I'll say first of all is that they definitely love their brother you know they love him they they protect him yeah you know and one thing I've noticed about them as well even though it's not something they say but I just watch it or I see it in the manner and attitude they are silent advocates in a sense for their bro you know for their brother yeah you know my my eldest son when he was in University he used to have a part-time job at a shopping center where you know a sports shop and he one day he came on to me and he said mom this is young boy that came in with his the mom was speaking they've been the buggy and this young boy came in with the mom and he just ran away for something shiny and he grabbed it among the meat and saw that boy I could tell he's autistic and you know you know we parents you guys when you see a child misbehaving so to speak you know quote unquote you feel embarrassed in a sense don't you yeah so the mom was looking apologetic and my son goes one over to her and said sit down never mind let him have that shiny thing and you know what's my son let him take it out even though you shouldn't have allowed him to take it was a shiny thing that came from the trainers you know that boy just got a fixated to straight away yeah so what is about you know his brothers is that they're quite protective of him and they're advocates for him at that age now with the girlfriends and the two girlfriends you know for the you know for the two older brothers date they just love Jesse and they accept and I think that's very important and I think they talk about him to you know to their friends you know and and associates and what have you so yes they I think they well they they are on we share that understanding that we are in it together lovely and that's lovely to hear so okay now talk to me about Jessie's place and the things that you do okay now Jessie's place I'm sure you'd have had one or two hints when I was speaking earlier yes of parents of children diagnosed with ASD but we also support parents who don't have a diagnosis yet but there's a suspect diagnosis you know suspect autism going on there so we we work with them and talk them through what they need to do for the assessment process you know so and and like I said to you earlier since COVID-19 you know we've been you know we did a number of virtual workshops yeah and what we try and do is we look at the holistic care of autistic autistic children and young adults many parents don't understand the importance of occupational therapy for instance so we try and bring that out you know bring that you know into the light so to speak yeah so we have you know within the team we have occupational therapists who are highly specialists occupational therapists and speech and language therapists and social workers you know who have run a couple of workshops to parents and professionals as well what I also think is quite unique about Jessie's place is the fact that we also take our advocacy and campaign to to outside the United Kingdom really you know so like I said we just came back in February after a week's training I mean I mean this took like a year if you like in the making you know to plan so we work with professionals and and members of the government in in Africa specifically Nigeria for now but we plan to go to other places you know because there are issues when it comes to you know Africa and you know and and disability it's it's a big area that just it's very complicated yes you've areas like you've got issues to do with cultural areas and you know religious barriers and all that so basically Jessie's place you know supports parents and we support professionals yeah and we've been we've had back in 2013 before Jessie's place was actually commissioned I was at the at San Bartholomew's Hospital where I facilitated a training program with consultants and directors about what to do with families once they've been you know how do you sign post families once they've been diagnosed or once their children have been diagnosed and you know it's like in Nigeria if you don't mind me asking that this is in Nigeria where we do not have dedicated diagnosis assessment areas it doesn't exist Anna and that's that's shocking that's it is really sad so what you have is rich families who are able to children over here okay or go to South Africa for instance or America you know you've got some private organizations trying to set one or two things up but we do not have a bespoke service for autism it's like what I said earlier it's about disability as a whole and the way disabilities are viewed the way it's seen in I'll speak specifically in terms of when I say Africa just think I'm thinking Nigeria here you know now we know that there are many aspects of autism that presents itself as an invisible disability so and when you're now looking at when you're looking at that aspect and you're looking at cultural beliefs and religious beliefs I mean it gets a bit messy you know what you're saying I've spoken to some families and even like one of my team I've been working with her son this is obviously a little bit different but when she used to take him to the temple for praying because he was making noises this exactly can't be heard exactly you're not allowed to say anything I know a family that every time someone used to come to their house it would make their son go upstairs because they were sure exactly that still happens in places like Ireland in Italy some places as well you know that it's a shame on the family that you know that's it yeah sorry Anna go ahead I said I'm just I said I find that extremely that thought process very very frustrating to hear I have to say that in Nigeria things things haven't changed dramatically for us to go wow we're doing really well now but it's beginning to turn a corner okay we do have a number of active autism associations or organizations in Nigeria okay you know and even though I'll have to say that that would probably you know that's not probably that definitely is an association of people who are well off yes you know what I mean you know so I mean if you're talking about families that live in rural areas or or you know uneducated families you know you know for instance that there's still difficulties there but there are a campaign is beginning to how that puts it I'm beginning to be raised and said you know in that sense people are beginning to to speak out more and it's it's it's turning a corner it can get better but I think we're on the right path when we went to Nigeria in February for the weeks training that was actually championed by by the government oh that's good yes yes and it was really it was well received and and we even had a an implementation committee afterwards so it wasn't just going to be a tick box exercise so we have any additional committee now which I sit on the I sit on the committee as well even though what we do is virtual so we're trying to make sure that the recommendations that the team made that you know they're working on it you need a few high profile people as well that have children and adults with autism and then yes they've been touched by the experience bit yes those are the people as well it will help drive it forward for you we have that when I when I spoke to you earlier when I mentioned earlier about the organizations there's one particular organization where the the chair is actually a high profile a person yeah with child you know with autism yeah that's it so he'll get it he's got the t-shirt and so talk to me a little bit about the anchor send friendly center and tell me a bit more about that what is that what that is I have to say it's joy joy joy joy now the the anchor the anchor center is actually at the anchor same friendly center you know I was reading your your biography quite a while back where he said you know your sons well you know we're having difficulties in schools and you just ended up setting up your own school yeah yeah for your children this is what this is more or less like the anchor center now the same friendly center is actually a multi-sensory place ain't up for children and young people with disabilities you know you know we're talking about clubs earlier and the lack of extracurricular activities for our children now this center actually is for like I said children with disability but then we've got facilities that would actually make them feel at home so it's not just a center where children can just be brought into a hole and then we've got games out you know we've got a what do you call it an act sensory room we've got a stimulating and interactive surround immersion room for the children you know we've got technology computers iPads sorry we've got a sensory room as well yeah and this is a you know the state-of-the-art sensory room really you know but where is the center in the center is in Greenwich is but then because it's an independent independent provision right families and care your family's parents care carers living within Greenwich Bexley Bromley Lisham you know they're all welcome okay so it's not it's not run by the cancer is running dependently it was actually set up by two parents usually these things are yes and you know what's that okay we don't have the center we're setting it up and I just came and joined them along the journey I've just been appointed as their same director a month ago or so so and I've been working with them and it's just the the high standards that they they want to make sure that you know we are pulled when this center is opened at the beginning of the year it's just phenomenal and they wait till is this full as you can imagine Anna yeah so what age group is it for it is actually from 0 to 25 brilliant really because there's not that much out there for adults everyone exactly go for but our children going to adults and obviously you know it's a developmental disability and it's lifelong so some of our children adults need support along the way so obviously to see that when obviously all this COVID is over I'd like to come and visit oh yes yes we I think we not I think I know we have you down on our list okay go to for you to come down and and have a look and it's you know we're also going to be offering workshops for parents yeah you know and and you know support them the best way we can so that's it's a dream it's really a dream come true so as COVID affected it now that it opens it close it has affected a bit of the setup but we're still you know we're still charging on you know full speed ahead but then the opening the opening has actually been pushed forward from maybe for a couple of weeks or so but then you know when you're looking in terms of you know finishing and getting the contractors to come up and do one or two things that's left yes COVID has had a bit of an impact but like I said earlier and now we have to be positive so we are pushing you know we're plugging on people want to find a little bit more information about Jesse's place and about the anchor center the friendly center can you give me any links online yes yes for the for the task center the the anchor center friendly center it's www.thetaskcenter.co.uk is that T-A-double-S for sure no no T-A-T-A-S T-A-S and center center with a an R-E not an E-R yeah so www.thetaskcenter.co.uk and you know the email address is info at thetaskcenter.co.uk or people can email me at shoulder at thetaskcenter.co.uk and what about Jesse's place yes Jesse's place we have all our social media handles that you can you can link through straight away on our website and that's www.jessiesplacefoundation.org okay that's great so that's them that's for children and for adults yes yes yeah the task center for children and for young adults okay that's great so up to 25 that's that's amazing so yes yes and and that's just the first of more to come brilliant that's it we need more of these centers because obviously with cuts now with government things have been pulled away from families there are a lifeline even like charities and support group I think I read an article it was about 60% of closed and it's just like smaller groups are a lifeline to families a lot of these biggest groups you know that let's say pay high salaries the money would filter down to families but yeah we need more of these sort of facilities because especially out of ours clubs because there's not that many things that I mean we're having we're having a breakfast club an after-school club where the children can be picked up we're having a Saturday club as well and a holiday club and we've got also will be will be I mean it's a play it's for play is for leisure and it's for education in terms of our post 16 and our school refuses so that some of them will be educated on site okay so um can I ask you so obviously his son 17 and he was diagnosed when he was 6 there have been anything different that you felt I would have done that differently now I know in hindsight okay I think for Jesse I think it probably would have been maybe looking for more ways that he could just show what he's good at mm-hmm to be gymnastics and athletics is concerned because he trains with professional athletes as well but I see him sometimes when he's having a go at his um on his electronic drums or his piano and I'm still thinking maybe I should have got something someone in I mean we have a teacher we have a Brazilian drum teacher drumming teacher who comes to teach him at home but then that's a big gone down because of Covid but I think I would have loved to explore more of what I believe Jesse has because you see with our children they autism can be a bit um how do I put it you know they it's like they're hiding it's not that they are but they just don't want you to see what they're good at yeah and when you're turning your back or went like Jesse for instance he's got his iPad and he will record himself singing we never knew the boy can sing what type of things you know because because we've got the cloud you know anything he does on his iPad comes on to mine oh yeah and we just saw him singing so I think I would have loved to explore that avenue of you know the things that he can do and see maybe there's more that he can do because I have to say you know you know when I talk about myself and my husband I think as far as his education is concerned I think we've given him the best that we can yeah you know he what I mean he went to a he went to a specialist nursery as well you know and we decided that he would stay on there till we got him a good school that would you know suit his needs and support him and we didn't get that school until he was six so he never actually went to a reception class in a mainstream school he stayed back at that nursery where we knew that you know he would be getting the support from professionals yeah so I think as far as his education is concerned we're very happy because just as a young calm he's a calm young man we've had no issues with behavior and I believe is because everything he needs is just all in one place for him but I think as far as his talents are concerned I think there's more that Jesse can actually do and I wish I've explored that a bit more because I'm right after his diagnosis I have to say we didn't waste time yes only 17 there's plenty of time to find oh yes yes yes yeah talk to me a little bit about the barriers that you would say black and minority ethnic families are facing with their autistic children that you're aware of yes like we you know when we're talking about Nigeria earlier I mean we've got Africans in this country and I can only speak for Africans to be honest I can't speak for even the Africa African-American community or the Asian community even though I know we have there is a similarity if you like within our within our cultures but like I said earlier for for Africans it's mainly that cultural barrier and when I say that we have when I say we I'm talking about Africans now there's something about stigmatization yeah you know and and that label you know we English I like because I believe I've got the best of two cultures African and English yeah we English we talk about the label don't we you know but for Africans it's about that stigmatization and about what would other people think and and when you now you know mix that up if you like with religious beliefs it becomes quite a difficulty so that there are issues that parents or should I say even schools are going through with parents to tell them that their child might might be looking towards I mean a diagnosis for autism it's something parents do not want to hear now you know and I have I've gone through you know issues where parents have actually suddenly removed their children from school because of you know because they think the school is now trying to label label their child because they are afraid of stigma you know stigmatization and when you're looking at Africans mainly in this country as well our refuge apart from home is church or the mosque you know and that's that's our refuge but then we have we have issues with stigmatization empathy if you like as well within church leaders you know I can only talk about church because I'm a Christian so we have issues there as well you know there are issues with mental health we with African parents and I have to say that because of my I'll be bored enough to say this because of my experience in the teaching profession and with you know with families with English families you know white families black families when you're looking at the African culture the big issue we have with our children when we're talking specifically now here about autism is that many parents are single parents but dads have walked so I mean I'm in that unique category if you like where my husband and I are in this together he is just as much you know a loving parent to Jesse as I am you know I can do he lets me handle you know the areas that he knows I'm good at and I let's handle areas I know he's good at so there are issues there as well as well you know and I thought that families with autism either brings you closer together or drives you apart yeah yes and I have to say that I have no I have no statistics to you know to backward I'm saying here but judging by the picture and what I see over time it's me it's mainly mothers who are with those children and and with that they're still getting no support from the dads even even if the dads have left and then still getting that stress if you like from from families you know and like you were saying earlier you know there are things that you know there will be issues about oh that child is not ours that child cannot be from our family we don't have that kind of disability in our family you know so mothers are going through a lot yeah they're going through a lot so are they do you think there's a lot of families that are getting support from extended families or I would say that for for for what I know it's a yes or no if I look at myself because I you know despite like I said despite having the best of both worlds I am I am African I have a tight family network yeah you know and my we've got an extended family who know about Jesse who welcome him who would be sorry and that's how it should be that's how it should be yes I've got my mom my mom is 84 when she heard about Jesse's diagnosis a while back she went to the library to find a book on autism so she can understand lovely no so some grandma is there for you know for Jesse I've got I've got a handful of friends who you know who know about Jesse who would welcome him you know welcome him within their homes anytime but what I've found is that with many families they don't have that they really don't they're quite isolated I mean I know of a mother who has a son who is 19 for instance and the stress has actually made her now she now has a pacemaker you know she's she's I've got I know about other families who are mothers who are going through a depression you know so what we try and say to you know because we have I have a couple of them family support network groups you know we know we talk about you're not alone just reach out for help and I try and reach out for help as best you know as best as I can and you know with either with my team or or by myself yeah I think autism as a parent speaking for myself it either makes you that bit tougher and stronger and you you you don't realize some of the strengths that you really have and how far sometimes it can push you as in with me it's sleep it's like my biggest thing because Angelo doesn't sleep a lot and that's supposed to think that I find the most difficult but you just survive it you just strengths within yourself that you never I never ever thought when I was a you know younger growing up that you know I would be able to set up schools or a college or you know I'd be having conversations with doctors I always thought they know this is really silly but it's just I think it's the way I maybe I was brought up that they were better than me you know you know what I mean and they just sometimes they just don't have a lot of common sense but I just think it can actually push you to a point where you just like you just thinking of your sons you're thinking of your daughter you're trying to get the best possible education or care or whatever it is that you're looking for at the time so would you say now that it's harder to get a diagnosis because of what's going on within the world or do you think it's easier because you can do it online what's what's what have you found so far talking to her I think you know the story with or the case if you like with diagnosis is still the same okay no well maybe the pressure about actually having to go for one with your child physically has been removed because you can do it online yeah I mean in Bexley for instance went to initiate an assessment takes about 12 weeks assessment to diagnosis takes six to nine months yeah you know and that's changed because of Covid in fact I think that would probably just impact the assessment process you know so it's I mean if I'm looking at my my my case for instance you know I said she just was diagnosed at the age of six yeah not every parent has that privileged background in my you know like me to know that okay I know my son is showing signs of this we will put him in this school we will put him in that in that group so when he attended that nursery the the specialist nursery he didn't have a diagnosis then okay you know and even when he went into the school with the autism specialist unit the mainstream primary school the only way they could have except accepted him which is what they said was that he has to get his statement first he didn't get that statement until he got in so I think I'll call that the power of prayer and then he got his assessment after so sorry all the assessment and the process and all that and the diagnosis after so I think I think the diagnosis is still and I've worked with a couple of parents in my role as temporary Senko in my school recently the process is still lengthy and I don't think it's easier and I mean from from the time of assessment till diagnosis six to nine months that's almost a year it isn't especially they talk about early intervention you know our children need to be diagnosed as early as possible so that the hopefully the correct provision can be put in place they can flourish exactly and and I think my worry now if we're talking about Covid now and we know that funding is an issue we know that also when the government has spent a lot of money let's not let's not be I mean let's not be in any doubt about it but when they want to start to claw this money back it's it's social care that suffers exactly it's special needs special needs provisions in schools that suffers now schools are already going through a big a big problem with funding as it is yeah you know and now to have that on top it's just it's you know I don't even know what to say it's um it's I don't think it's it's going to be an easy road but like I said it's good to be to be positive yeah and we can just we have to just do what we can for our children and what I say to parents all the time yes diagnosis or not yes we have to work on that we need that diagnosis so they can get the EHCP and get what they need but we have to continue to be the advocates for our children yes you need to be the ones that speaks out for them and even without the diagnosis if some certain things can be put in place before that fight for it yeah out for it if you have to yeah I think the thing is some parents might find it a little bit overwhelming because obviously they're juggling so many balls especially if they're a single parent so my advice would be is find somebody that can help you someone that absolutely it for you if you yeah you're drowning you know you feel that just too complicated because you think about it the process is alien when somebody's starting the process and the language that's used as well the acronyms that are thrown out it is quite complicated so please don't feel that you have to do it on your own if you do need someone if you do live in the area where Shola has got her support group please contact Jessie's place and please check out the anchor send from friendly center which I'm looking forward to seeing so just to remind people it's www.jessiesplacefoundation.org and if they want to find you on social media where would they find you on if they're looking for me as Jessie's place on Twitter that would be at Jessie's underscore place okay yeah and then the task center for the task center we have we also have the anchor sent friendly center so if you put that on the Twitter search it would come up okay so let's talk about obviously as parents and you know directors or whatever role that we've got you know we're juggling so many yeah have to look after ourselves so this is a show about mental health and well-being so talk to me about before COVID what did you used to do to relax to help you recharge your batteries okay before COVID I like to travel believe it or not you know I know I have a son who's got special needs yeah and maybe that's not actually being seen as looking after yourself in the sense because when I go most of the time not all the time when I go most of the time I take Jessie with me okay I just definitely love struggling yeah he loves airplane so I like to travel now one thing that I do also is I love listening to music okay and I have I will boast about it I have a 200 watt speaker that's you know that's Bluetooth Bluetooth connected to my phone I've got my Spotify playlist gospel music jazz R&B pop it's there I've been told up once or twice by my sons mom turn it down I like to lost myself or lose myself rather in the world of films yeah you know I love watching biographies or documentaries or even funny you know funny funny films so I do that a lot and recently especially because of when we were let out okay you need to start contacting the few friends you have as in acts each other can we just go out for lunch you know we I think we take each other for granted a lot because we meet on social media we talk on the phone you know and and so I started doing that so I would just call up one of my my close friends I don't have that many but those ones who are so near and dear to me you know like I've got a date with one next week I had a date with one a couple of a couple of weeks ago or so you know so I go out and that would be obviously just me by myself and then you feel a bit guilty when you're going out I do especially when you know I mean my husband he's the most loving kind-hearted man you can you know you can come across I'm not just saying that because he might be listening it's true but they also times when he's also allowed to have an off day you know what I mean so that you could also then you could now be that it's true in that he's I'm thinking of a lot did and I'll say to him you know what I'm going out and you go but of no but I'm going out you know so I'm out you know but then you feel a bit guilty but then because I know that I I don't need anyone to tell me but you know people do tell me a lot I know I am a good mother I'm I try my best to be a good wife as well and you need time for yourself I mean things that I do also I know I'm sorry to say this to you though and because I know you suffer from lack of sleep I'm sorry about that but I love my sleep and when I say I love my sleep it's it's just that I sleep at what I call a decent time yeah which is maybe about 9 30 10 o'clock and I'm up by 5 or 5 36 you know so I don't want anything breaking my sleep in the middle Jesse used to be a non sleeper up until the age of 7 by 1 o'clock in the morning singing nursery rhymes and I'll be out there I'll be at work with this heavy head you know I imagine you have to teach a class and then I start walking you know my colleagues who like Jesse didn't sleep and yes he didn't yes he didn't you know but luck well blessed blessedly and thankfully all that stopped so I get my sleep I do what you you know I get my decent hours of sleep and since Covid I've taken up yoga yes I just can't get into it I like fast things like fast I know you're a dancer aren't you yeah I have my moments of madness where I'll dance around the house with my speak out in my music you know so I think for me it's just about trying to switch off which sometimes I find difficult yeah to do because I'm always having all this thoughts in my head about what I want to do next or maybe there's someone at the end of the phone who needs my help or you know someone who I have to go and see so but it's actually learning to try and switch off because I think since I clocked 50 I've been thinking you know which I'm sure many many other people in my shoes would be thinking as well you are not gonna leave forever start looking after yourself yeah that's for me when I hit 60 in March I just thought I was like really worried about being 60 and Lisa in the office kept telling me to shut up about it she said you're just like you don't look your age you know you still really I said yes but I am 60 and I think I suppose the thing and I've said this many times at the back of my mind I just worry about who's gonna look out for my sons when I'm gone and that's the biggest worry that I've got and I speak to many parents and they have that worry at the back of their mind all the time I said all you can do is really just put in place as much as you possibly can to help them navigate the world the best way I know that but I think for me I think Patrick you know once he's moved out we're getting there now we know he's been working for three years yes in but with Angelo I could you hear such horror stories sometimes of what for vulnerable adults that you know can't tell people what's been going that yes the back of my mind all the time and it's just like it's sometimes it can drive you mad you know what I'm glad you like you said you would never come across any parent who did not you know who doesn't think like that yeah I do but like I said to you earlier I've got my faith and I hang on to that yeah you know and and like you like you said I just put as much as I can in place you know I mean this wonderful you know initiative like the task center that's like a legacy to our children you know as well you know so it's it's about just doing the best that you can and I try and remind myself that worrying is not going to help me it's not going to do anything yeah but yeah we say that don't we but we know that but we still do it you know but I try and quickly just to myself out of it because I do it all the time worry about it all the time you know no parents will not worry about them you know the well being of their child you know once they've gone and I think that's also one of the reasons why I'm a bit resolute now to look after myself more yeah I did start the gym I used to go to the gym really justly it's kind of broken down now but I'll pick it up again you know Jim's not for me I like I like walking I didn't like walking at first but it was because I thought was a good stress buster for Angelo so we do go together we're like robo cop the purpose but it's a good stress buster and we go to various different parks and you see people and you nod to each other because you know there's like regulars go at the sort of the same time and obviously I like my dancing it just makes me feel young I like my tap dancing I like my I used to like disco and all those sort of things yeah it's just I love all that sort of music so I think that's what helps you and looking after yourself food wise as well you know yes it means all those sort of means oh you don't ask me how many I take every morning so if you've got a few minutes left so if you're a parent and you're just starting out on the journey your son's just been diagnosed or your daughter's just been diagnosed what tips what gems can you give a parent okay as I would say first of all walk through what I call it's difficult but you know walk through what I call your journey of acceptance as soon as you can because if you are not at that point where you're accepting your child's diagnosis I mean you can have that diagnosis on paper that does not mean you've accepted it you know mentally and you know physically you know you know what I mean so that journey you have to go through that as soon as you can because like we said earlier intervention is the best you know so I would also say you know do your research about services you know within your area you know there are there are fantastic organizations out there like the National Autistic Society I mean you know join join support groups jump you know parents support groups yeah you're not alone join a support group it could be for now I guess it you know we'll have to be online obviously but then maybe eventually it could be one that you know they could attend locally if this is for a child of a school age I would say use your Senko okay use your Senko in school because they are armed with information yeah definitely just you need to arm yourself with information yes yes do your research be you know when you're in meetings be calm be assertive as well yeah yes yeah I mean I also also said to parents do not be phased or intimidated by authority now you know where you don't term where you can't where you think you you know I don't know what to say here I don't know what to do here you tell them I'll be back someone who can work with you who can be your advocate you can talk on your behalf you know and we've come into the end now sure that we've got just a minute or so left to the end of the program I could feel like I could talk to you forever you just lots of positive information out there so just for people listening in it's www.jessieplace foundations.org and if you want to follow and show that it will be on the charity website as well she's gonna be writing an article for us so check out www.hannahkennedyonline.com I want to wish everyone all the best for Christmas and hopefully we'll have a better 2021 thank you so much to all of you chatting to me and I want to wish your lovely family a happy Christmas and all the best for 2021 for you too thank you Anna thank you so much for having me and all the best thank you and thank you everyone stay safe stay strong keep going one day at a time we will get there we will definitely get there bye everyone are you feeling anxious online therapy 24 7 is here to help we offer confidential support from the comfort of your own sofa our highly qualified therapists are experienced in a full range of daily challenges you'll be in safe and trusted hands don't suffer alone change your life by calling us on 0207 553 5080 and check out our website online therapy 24 7.com