 We used to be. We don't know hard for you but before we move to our first test of the day, remember the battle of the best. MARARA akie Matata We have a band of sailors Just head over to our Palais twitter, or cast the vote The best today is between Matata v. Sailors do you know what to do? We have a link that we will lead you to twitter So, can you introduce yourself? I'll introduce myself. I'll be here online if you'll be in travel. I currently really have. We're about that. Yes, we're in Africa. And also Miss Elite Face of Africa for 2020. And I'll be going to represent our continent and Kenya in Miss United Nation in Canada. It was supposed to be last month. But then corona happened. So it's going to be next year in March. And we call out for voting, please. We will guys will do that. And I think I may be reigning for another one year because of what happened for Miss Africa. So, yeah. And I'm a mother of three. Really? Yes, of three boys. Interesting. And I'm an entrepreneur. I run a company called Tech Hub Holdings and I have a foundation for special needs children called Andy Speaks for special needs persons in Africa. Okay. So, all these titles, right? And you're still going to get more. What led you there? What led me there, you know, I had like a five year plan, right? So I had searched for a session and you were like, by the time this decade ends, I would like to do all my childhood dreams. You know those things that everyone tells me is impossible? Yes. So one of it was actually I wanted to walk the ramp and be me something. But when I tried to do that when I was 19, I was told I am like two inches short. You know when you're going for miss world, miss what? Yeah, there's actually a height. Yeah, there's a height. So then my friend asked me, have you ever thought of it? And I'm like, ah, I'm past that. Then she was like, no, there's actually one which encompasses everyone. Misses and all that. Because since somebody will see, there was a slope for that. That's why it's called elite. I can see your vision. That's why it falls. So I was like, yeah, I can give it a shot. I had never done modeling before. So it was my first time. And I came back with 19 awards and it is the first time it has come to Kenya. Miss Africa has always been in AC and stuff like that. To you. So yeah, and I broke two records and I was like, yeah. So that's how I ended up there. But also I wanted to use it as a platform to continue championing for what I love most, which is neurodevelopmental disabilities. Two of my boys have autism. So that's why I championed for that. Okay. We'll get to that. But before we do so, when you get the titles, of course they expect you to give back to the society. So from each title that you got, what is it that you championed for? Well, all of them have maintained it constant. So I do mentorship, especially for women. I do menstrual hygiene promotion, donating sanitary towels and education for just menstrual hygiene. And most now is I fight for the rights of children with neurodevelopmental disabilities. This is celebrity, autism, don't syndrome, learning disabilities, those things that are invisible. Because not many people will actually know our child has an issue. You just brand them something else. And because of also the African culture and if you look at our policies as much as we say it is inclusive, the fact is it's not. Because they're always left behind. So trying to raise awareness and at the same time try and let people be aware. Stop hiding your kids in the house, bring them out, and there is services that actually can give them any animal life. So that's what I championed. Most fashionable parts. And I'm a Rotarian also. And as a Rotarian, actually today is World Polio Day. And Africa has been declared polio free. And we're celebrating that. That's why I have this label here. Polio now also. We're close to ending it. Globally. Very close. Okay, so at the beginning of when they announced the lockdown and everything, I was watching a certain interview of a lady whose son had autism. And she was just talking about how had it been for her child. He can't go out. He has to remain extremely sanitary. I mean very, very clean and such things. And how is it for, how has the pandemic affected people with children who have neurodevelopmental conditions? It's been tough. I think that lady you're talking about was me. It was alone. Yes. On Citizen, right? Yes. That was me. That was me in my crazy normal life. So it's been crazy. Like insane. Children with autism need to be taught things in a specific way. First of all we're trying to explain something that's not tangible or they can't see it, they can't understand it. So you see this is a concept that is not good to them because they're used to tactile audio and visual learning. That's how they learn best. Then it was very sudden. Like if I want to change the routine of my son, like they're about to close school, I tell him like two weeks in advance. So that they're prepared. Now for corona it just came boom. We can't go anywhere. They can't go to school. They can't go outside. You can't see big people. And that enclosed space. Now like for my last one has ADHD. That is attention deficit hyperactivity disorder. So that means hyper is there. Then you're telling them I'm containing you in this space. Lord trust you me energy levels from wherever you just dwindle to a point you're like God please come through. So at least you're forced to find ways of how to adopt that. Because now you see when other people can do e-learning others can do this on TV that the government did if they are children are not considered. So for us we had to be their therapy sessions were cut out. That means I had to try and fit all this. So I have to be boss lady in the office try and figure that out. I have to be mommy because I have the eldest boy who's a teenager. He has to continue in this school. These are the two they have therapy speech therapy occupational therapy so you're trying to now learn new things and trying to teach them and teaching them is not as easy as it is for a typical child. So you can imagine parents dealing with all of this and then of course there is the economic strife that came with it and there is a komobid a komobid is a coexisting condition most of the persons with neurodevelopmental disability you find either they have another komobid either OCD epilepsy or convulsive disorder and many many other underlying conditions so and mine are all medication so they have to take medicine every day so they don't convulse because when someone gets convulsions your brain cells die and if it takes longer then a child can die even an adult because convulsions totally disrupt the entire system it's like being shocked so you can imagine that and that's one I'm just trying to summarize so the socio-economic plus now the learning plus now health wise now access to such things so it's been it's been very intense for us as caregivers and you find that who do you run to especially right now everyone is actually having their own issues many have been laid off and a good number of parents with children with disabilities have been left so you find you're a single parent now topata the job they were doing was maybe koshanguo and stuff like that and you know for us we find like most of the time that one person who's easily to be let's go from work because you know we always are I need time out to go take care of this I need to take them to therapy I need to take them to school so you're not available all the time and then you can even and you find because of the specialty like a parent who has a cerebral palsy child you can imagine how delicate that child is you can't even say you can do the therapy at home massaging and stuff like that because one wrong move you can paralyze that child you can even break you can leave my child with the neighbor because they need to understand remember the kids are need special care like special diet and stuff like that so yeah it's a lot I can imagine one parent who has children with no conditions it's a lot for them so how you deal with that personally personally I try also remember I am human because one thing first is acceptance you accept this is the situation and try and make the best out of it I've empowered my eldest boy also support and also my nani so they come through like for the first two weeks I send them to my mum because I have to to be not selfish but yeah you need your time to because it's not easy because like sometimes the child can have a meltdown when they're just screaming because you know they're non-verbal they can't communicate so also they could be having sensory sensory overload processing because they process things differently so maybe it could be sound light or texture or just internal and they can't so they react differently so I take time out a lot I love myself you have to you have to do that so that gives you rejuvenation so we survive like that yeah just love them they're the most lovable human beings by the way like just amazing so focus I always see the able and not the label so I try and focus on their abilities if you're good at this so be it let's do that you know and then you involve them in the things that you're doing especially now during Corona one of the things that you can use you can do at home ensuring you involve them in what you're doing so that they feel part of the family you know then it's so feeling like you know they get because you see what they also learn in school is something called ADL activities of daily living like dressing you know them they need to be taught how to dress until now my 10 year old needs support to be dressing they're fine motor skills there are things you can do at home that will support them so that's that's how you try and make it fun learning and the activities right okay so who is it that you have partnered with when it comes to championing for children with neuro then neurodiverse community we work with different organization depending on what projects we are having like we always have we have an annual ride last year we did our bicycle ride through 16 counties but that is our own initiative but we get partners at the point depending on who comes on board then this year we're supposed to do a motorbike one like yeah round Nairobi in and out the entire you know but then corona happened do you ride yourself a week before do you ride the motorcycle to yourself I was facing my fear you know you have to for something to be meaningful you have to it has to be a sacrifice yeah you have to do yourself so I am so afraid of motorbikes I was living life but so now I tried at least I went for a ride before long ago I was like and it's fun then it's fun I had taken my kids for a motor show seeing how they were so excited about bikes and sound I was like this is something we can do you know and it's faster so partners per se I I work with the national council persons with disability just trying to get persons with disabilities to be understood and at the same time they understand us so you find will be called upon upon advisory basis and apart from that we've worked with Sense International because they also look at multisensory disorders they focus on deaf blind but then you see also most of the time remember I mentioned the kumobit so you will find child and neurodivers child will either be hard of hearing sometimes especially like those with DS that's drone syndrome you will find they have issues in sight or with their hearts and stuff like that so yeah multisensory also and then we also call upon partners if you feel like other organizations when they have an event and they need our support we go and support them and we have like children's homes that we also now as Miss Africa because I combine the two I go and support them with the food and clothing and stuff like that actually my kids celebrate their birthdays with either autistic homes like that so we make it that there is something we are plugging in in the community how about like you said it takes a lot of a lot of energy from the caregiver what is it that are there groups maybe support groups for caregivers we have our own as Annie speaks especially its persons we have a Facebook group and every Saturday like today in the afternoon alternate Saturday I host a show called Neuro Digest where we just educate them educate raise awareness and also bring in specialists to talk to the caregivers we have a Facebook page we have because Twitter handles IG but we have also WhatsApp groups so there are several also social media platforms where parents can plug in and learn because most of the time you will find you are trying to do something like easier sporty training for normal persons for children are in diapers up until adult some of them some learn how to use the puti maybe at 5, 10 depending because it's not an easy process so we support each other that way in the different platforms so you will find there is one that's all inclusive you find there is one that is for autistic parents all need of the grandparents and CP so yeah the groups are there can you share where people who are going to the same can find the groups especially one which is all inclusive for us we do all inclusive so someone can go to our Facebook page or even our IGs Andy Speaks Twitter we are Andy Speaks 4 Facebook it's just Andy Speaks Andy that means AMDY that's the shot for my inspiration Charles Andrew so I shut his name and then also it's an acronym for something else so Andy Speaks for special needs persons in brackets SNP so that's on Facebook you can just DM or drop a message there then we can now share the link depending on which specific group you want to be in yeah in it okay let's talk about the dinner that you have in place yeah tell us a bit about that and what your what your intentions are okay so looking at the challenges that we are going through there is one thing I like focusing on that is if you're a person we are all I use this statement we are all in the same storm that is COVID-19 but we are all in different boats so you will find like some are in ships where they can survive through it some are in fishing boats some are just sailing on a plank you know so that I want us to have equity in life equity meaning meet people at their point of need right so when we did a survey amongst the groups and we realized there is four things that parents want the most there is food there is medication then there is EGC right those are what they've talked to so when GAVA is coming or sanitizer masks as we are not even there we are talking about learning that's the last thing in our mind you know because if I look at my child if they don't go if they don't get their medication it's a risk of life so those are two crucial things so those are the we've had this project where we've been distributing food diapers sanitary towels and the girls you know people think that because you have a disability you don't menstruate they still do so we were also supplying that and then now the sanitizers and stuff that we receive but the one key thing we are doing for this dinner that is tomorrow night it's a virtual dinner meaning you can join us from anywhere we are going to be it's going to be 2.5 and then per family we'll come together and the funds that we're going to be raising we're going to be channeling them to buy medication for those who need it the most you see as government is saying the numbers of how many people have covered for us in our private spaces we know how many parents are almost going crazy at this stress we've lost so many kids we buried one of our beneficiaries actually passed on two Saturdays ago you see we had funds only for like a month's medication so we were not even able to give everyone on our list so we're like can we try and make it like at least a month or two supply for everyone we have on our list I know we can't reach everyone but we've gone as far as LAMU we've sent medicine as far as CIR we've sent medicine all the way to Isiolo so you see the people have the need but then if they're not in the sacus where we're talking about there is support somewhere so that's what I was saying like on our platform you wouldn't know because we posted the link we got we have the prescriptions we have we're working in partnership with Checkups Medical so they'll call the doctor because we can't even afford taking our children for review one session of review is like 4-5 who can afford yeah, a neurologist and we have very few neurologists and on top of that you find we have therapy which accession you need like three sessions minimum one session a week a week minimum is 1,500 to 4-5 depending on which therapy so you can imagine all these costs and those are the things and the extension it's not something you can leave it out and funny enough even therapy for kids is not covered by NHIR so you can imagine how many parents are struggling so that's why we're reaching at least if we take away one burden so that they can try and do this others for therapy we brought in therapist to explain how parents can do this at home through now the neurologist I just showed that I mentioned with host and at least you see now that one and it's on our YouTube also all these lessons all these specialist interviews and illustrations are available on our YouTube channel or even my own YouTube channel they're there so what else could we what was the gap the met that's how we're coming in so tomorrow we're having dinner we're going to be having a virtual dinner it'll be like the corridor the only thing is now we're not doing gowns and stuff like that but it's for a cause yes we will sit together share and explain and we'll have also beneficiary talk to you this is how this was for me no sharing how and what they've gone through so we're also asking guys to just support us even if you buy meds buy 100 paup that's a day supply for someone we have a name Changa so if you just go online and write M Changa it's there then there is the pay bill also for M Changa you can just go to the pay bill and make a donation that's a 50 paup that's for someone who's on something like Fino Bab which is 3 paup you see we'll talk to them for one week so we have like fluctuating needs 30,000 per month yes so we're just asking guys for 2500 you'll be adopting a family for one month and maybe now if it's someone who's expense is bigger then that means 3 people can come together and so that person introduce their body we're just trying to reduce the burden we're all going through things but if we come together African Obuntu I believe we can really really make a deal sure so how can people be part of the dinner be part of the dinner we have set up the event it's linked on our page my page but you can just if you make a donation but 25 we will get the notification of course we'll reach out and send you the link for joining the dinner yeah so and then we're having people who are saying I cannot come for the dinner but I'll make a donation so either way so you don't have to attend the dinner we would love to have your company but you can also say me nikona so I want to give up it's 100 paup yeah me nikona 50 I can do 10k so it's according to what you can so if you go to Mchanga and just type andy A and D Y it will bring for you our project then you can make the donation there and we will reach out because we'll be able to get access okay um could you kindly share your social media handles and also the YouTube channel where people can join in to the conversations so my personal one is Twitter is Mura Sylvia at Mura Sylvia for the organization it's at andy speaks for number four for IG is Sylvia Machabo for andy speaks it's andy speaks just as it is on on Facebook mine is still the same my full name Sylvia Mura Machabo if you want to follow now the Miss Africa one it will be Miss Machabo Miss Africa Elite 2020 for andy speaks it's andy speaks for special needs person in brackets SNP that's the group so you will request and then we will also accept and then I know there is a page also same name haven't changed YouTube same thing Sylvia Mura Machabo my personal one and for the organization it's andy speaks for special needs person so there you will find all the interviews all the learning materials if it's something like autism you don't understand we've done clips over there to just illustrate what it is and yeah we'll be glad to have all of you come and join us and support and yeah I think I can give the pay bill number I can give the pay bill pay bill number and we get the eShort for that so that that way you find if we come together one at a time it's easier for it's way way easier yeah there is the eShort I don't know if you had it if you had it you would have just shown it so our pay bill is 328871 so if you are attending the dinner you can just write your name so that at least we RSVP but if you just want to donate you can write the account is met that way then the Mchanga one is 891 300 the account is Andy SMP so it's the same thing so you can either use Mchanga for Mchanga it's open because you can do from Airtel from you know it doesn't matter you don't have to have a Parikomia if you want to swipe if you want to pay through PayPal so it gives you all options that's why we are focusing more just go online the Mchanga there it is there you go yes so thank you so yeah there we have our pay bill there okay and we appreciate your support we still thank you so much for coming through thank you my baby we appreciate your time we appreciate your time and we wish you all the best in your campaigns and we hope to see more change when it comes to these issues slowly but surely of course we've got to get there that's for sure and thank you for having me you're welcome yeah so any final word to caregivers out there and people who are going through something similar yes so to my fellow parents and caregivers what I always want to say and always telling the rest of parents never take it like a burden look at it like a learning point God knows why He gave you this child He'll give you the energy and the grace to be able to take care of the child embrace them acceptance is the first thing because that's where it all starts you accept your child for who they are you know a child is not like an item from the supermarket you can return to sender this is what you have embrace it love that baby and they will love you back and teach you things you have no idea about I'm so impatient trust you me I'm the most patient person right now because God uses them to enrich your life so just focus on that I know there are days you feel tired I can't do this no more just take a step back when you get to that point re-energize and then go back because you cannot keep from an empty cup and also support others join others so that you don't feel alone and we share experiences so yeah together we can do better of course thank you so much once again and wish you all the best thank you as you have heard from Sylvia together we can we are taking a short musical break