 Good evening. Welcome back to the nest. My name is Maureen Waititu, your host. On 2nd of April we mark the world autism day. It is a day that marks neurological developmental issues mostly in children. Are we failing as a country to bring this neurological developmental matters to a day of awareness? Is it just a paper that is signed for PR? But just imagine a parent who hasn't had one but two children who she's raising on her own who have autism and a different neurological development disorder. She has an incredible story. Not only has she overcome a lot of these difficulties but she's decided to become a voice of matters autism with her organization. I cannot wait to hear her story and I'm sure neither can you and so let's have a sit and meet her. Autism is a neurodevelopmental disorder that impairs social skills, communication deficits and interfering repetitive behavior. Intellectual disability often accompanies autism. Autism spectrum disorder impacts the nervous system. Research shows that autism does occur more often in boys than girls with a 4 to 1 male to female ratio. Autism symptoms typically become clearly evident during early childhood between 12 and 24 months of age. However, symptoms may also appear earlier or later. Early recognition as well as behavioral educational and family therapies may reduce symptoms and support development and learning. Some of the symptoms of this disorder include repetitive behaviors like hand flapping, rocking or jumping, hyper behavior. Fixations on sit and activities or optics and being fixed to routine to the point of getting upset when a routine is changed even slightly. Extreme sensitivity to touch, light and sound. Autism is caused by genetics or environmental influences. As the world commemorates World Autism Day on 2 April our motive is to raise awareness on this condition. I hope that gorgeous woman, a beauty queen, a queen mother of three lovely boys and that she is very passionate about all matters autism and I cannot wait in her own words for her to tell us what she is all about and I will not waste another minute and I'm going to introduce Sylvia kindly tell us all the crowns you wear because I hear there are quite many. Who are you? Okay, Sylvia is my name, Sylvia Moramo Chabo. I'm a mother of three who I have raised single handedly and I'm very proud of that. I'm a divorcee and on top of that I have a business woman. I have my own company called Tech Hub Holding which is in graphic design branding and events management. Nice. And then I run a foundation for championing for persons with neurodevelopmental disability because of my three boys, two of them are autistic. One has autism, the other one has ADHD and this has been an experience to say the less. I sit in the board for Sense International. I am the patron for Makadera sub county scouts. I like to say I am the reigning queen. I am currently reigning as Miss Africa Elite 2020-2021 Miss Africa United Nation 2020-2021 and Elite Face of Africa 2020-2021 COVID extended my reign for other women. Absolutely. See how good works. I got goosebumps as you kept introducing yourself and I can't help but notice what a strong woman you are and you keep yourself together and you raise these boys and you run all these things. Indeed women do run the world and I've just met one. We do run the world. Peribusana. Thank you very much. Yes. And also to top it up on Friday, I was awarded as the first runner-up for national inclusion and diversity individual in the champion. That was another feather on top of... A jewel. Another jewel on my crown. I am Azurino Mimi and also top women in business in CSR. Congratulations. Thank you very much. I cannot, you guys. I'm in the presence of everything powerful, everything good and I'm really, really honoured that you could honour our humble request to have you on board so that we can speak about autism today. And as a mother myself, you can imagine when you're experiencing the journey or you're praying for a healthy baby and you do everything you can to make sure that the baby comes to the world and they're healthy, but these things are unexpected. And then what and how do you jump the handle? And I'd love to hear your story from, you know, the journey of motherhood from the day you got your first born when you got your second born and maybe noticed, oh, something is off. Could you walk us through that? I had my first born when I was 22, I think. They're about... I'm an Ali Bluma in everything. That's everything. Way to go. This is a bouncing baby boy. I tell you, I was first scared. You know, when you get pregnant the first time, we always have our scares. For me, my phobia was stretch marks. And sorry to say this, but I'm light-skinned. I was a light-baby and I'm like, okay. I'm being very brutally honoured. No, no, no. This is a very safe space. Okay, yes. God had me, but I don't have stretch marks right now. He's an intelligent, awesome human being. He is grown to be a man, a man of the house. We've walked this journey together. He's been my pillar and support system in raising his two brothers because going through a divorce and special needs kids, you can't go at it alone. Absolutely. And most of the time, sadly, you find yourself in a kuhun by yourself. So he's been a pillar in my life. He's called Daniel. So I always say like, yes. This den of lions I mean, he walks me out. Wait, I was just thinking of the same thing. Yes. And then my second born is called Andrew. After my dad. Oh. And Andrew came and he's beautiful. He's a boy, but he's beautiful. Yes. No way to be. He's a pretty boy. Yes, he's a pretty boy. They were like, why are you putting lipstick on him? Like, dude. He doesn't have any lipstick. I didn't have any lipstick. That's how good it is. Yes. And he now came out. When I wanted light. Now he's him, he's uko. Yes. So he was like an awesome child. You know the child you want. But I was walking being a wakaholek when I delivered him a bit early. Okay. Because I was handling a very tough project at the time. And I think that also caused a lot of complications for me. Although the pregnancy had been smooth, I had my evening, mine was evening sickness. Okay. I had evening sickness. Interesting. Yeah, actually had to drop out from, I was doing evening classes. Okay. I had to stop. Okay. Because my nausea used to come at like five. You live, work and your system can't just function. That is interesting. Yes. Every child is different. Yes. And then I was craving water. I was laughing at that. I would finish a whole little mountain and cut a chicken and fry it. Oh my God. Alone, like don't mess with this. No way. So the bus, I just, my water's drained. Okay. You know, I had not experienced water breakage because even for my first born, they had to break the water. Of course. Yeah. So I had no experience of that. So I just signed off the project. Okay. Then when I stood up, I'm like, I see a spot. I'm not forced to have a spot. I just went and pulled my boss lady. Yes. And I'm like, I think there's something. So she came, she was like, okay, it's not a lot, but let's call the doctor. Yes. So doctor says, come, we need to do a scan and check like how much of it has. Yes. Because I have no experience. Like, is it supposed to be a lot? You know, in movies, there are things you see. And they all look like the water breaks. Yeah. It's like a girl's job. So I'm questioning like, okay, it's something right from, you know. So then the doctor. So of course at that time I was still married. Yes. So I called her and I'm like, hey, need to come pick me from work. Yes. And we need to go straight to the doctor. So pick me, we went. Then they were like, no, we have to keep you. And we did the scan. They were like, yeah, the water has drained. But let's see within the week. Okay. Because it was at week 37 there about 36. Oh yes, I was going to ask, okay. Yeah, week 36. So they were like, let's give it some time. Okay. Because it was just starting. So until we clock 36 like this, then we make a decision. Yes. But there's no labor at this point. No, at this point there was no labor. Okay. Just the water. Okay. So after that, I was like, okay, so let's do this. Right. So we waited whole week. No improvement in the liquids. No. So they were like, okay, let's just inject to that oxygen thing to make his lungs able to breathe. Yes. So we get him out. Yes. Okay. Then now they induced me. Nothing. No. Second induction. It was now, it came like the labor pain. Yes. Then it disappeared. Third induction. They were like, I was not the lady. Yes. I was stuck at three centimeters. Yes. So they were like, okay, let's try third and final. Okay. So after this we have to think otherwise. Okay. So when this is over days and that pain was in 10. Yes. You know. Yes. So it was like, it's here, it's here, it's here. And it disappeared. So they were like, okay, guys, we have to go to Piatra. So how long is this? This was a whole week. No. Imagine, as into the week. Like we waited like three days. No. The water didn't come. So another, because I remember, it was on Friday. On Friday evening. Yes. Because they were like, I know we have to get this baby out now. Yes. Because they were checking. And know how uncomfortable it is being checked by different people every other time. And I'm like, I can't. I can't. There's a lot of going back there. Yes. But anyway, it's called the experience of giving, you know, life. Yes. So time came and I was ready to see us. They refused for my ex to come in. Okay. I went in. I just remember them counting and knocked off. And I woke up. I think like the next day at around midday. That's how long I was knocked off. Okay. So what time did they knock you out? At like 6 pm. Oh. And you woke up the following day. The next day at like 11. What? Because I remember my dad came. That means he was visiting us. Yes. Yes. So I, the first thing I was like, how's my baby? He said she's fine. Yes. You know? But then there is a way you're told. Oh no. And you're like, okay. I know. Matano instinct is never wrong. Yeah. Okay. Okay. He's like, not sure he's in an incubator. And the way they rushed out, because they rushed out with him, I wasn't even able to see him. Yes. But I've seen him after they've said him. Yes. Also he had been put on oxygen and stuff like that. Oh I see. I was like, okay fine. Can I go see him? Mm hmm. They were like, yeah sure. Then I tried to stand. And my whole world went black. Oh my. So I was reacting to the anesthesia. No way. My heart rate went up. I couldn't move. So they had to sedate me again. I remember my dad had come. Uh huh. So I just told them, when I woke up again, they weren't understanding what was going on. So I told my ex, please go take a photo. Yes. At least I see. Yes. Oh he's so tiny. Yes. They come out so wrinkled and stuff like that. Yes. Okay so cute and tiny. Yes. Then they were like, please may I hold him? They were like, okay so let me bring him. So they brought him out. Okay. Then after a while, they didn't actually, he didn't get to me. They were like, we can't get him out because he started turning purple. Oh no. So they put him back. Okay. So now I had to gather all my strength and my dad was there. Then I had to go and see him. Okay. And you know, after CS, I always say I'd rather normal any day. CS is drama. Yes. You know you forget. You're used to your normal body. Oh no. So of course you have cut and you're like, everything is incredible pain. Yes. So when I see my baby, I'm like okay fine. So how long they have to be here. They said we'll keep checking. So of course we stayed for a while. Okay. He had jaundice after that. Oh my. Then he was having a lot of gastro issues. Yes. And this is one of the telltale signs that no one tells you. Jaundice. Uh huh. Gastro issues. Yes. That is tomak issues where kids are having a lot of quality and reflect and stuff like that. Yes. Yes. Yes. Those are the very first signs of autistic characteristics that we should be aware of. Of course. And I think even our the system should be able to teach our lessons. To teach them? Yes. So, that is the thing that we should be aware of. Yes. So, at least when you go into the doctor, it's marked like follow up with caution. Exactly. Yes. Because especially with jaundice and I know this because my first bond got it. Uh huh. And I was reading. Nobody was telling me in the hospital what's going on. They just tell you where he was. Right. You know? Eventually they put him under the UV light. UV light. You can't. It's horrific. And then when you hear of the final, final consequences We agree, they should continue. Okay, so here you are, your baby. So we were in and out of hospital for like the longest, then one day when I'm holding the baby, his dress was just chilling at home, and he started shaking. It was in the first time, like shaking. You know the way when you're feeling cold, if you're a tiny baby, I'm like, okay, this is what. So when I went for the gastro check, because now he was lactose intolerant, I had to stop taking milk. Yes, yes, yes. I had, you know, there are all these new things, and then now you put on special, like, what is that thing called? The expensive canned milk. Oh, the formula? Yes, formula. Yes. So it's a very specific formula you have to give. Okay, for the baby now. Because of the complications he had. Yeah, because of the complications, because you're trying this, you're trying that, and because with all this as a mother, it stresses you, of course your milk production will not be the same and stuff like that. Yes. So one day it really went, when I mentioned it to the gastroenterologist, he's like, no, it could be a habit. It could be a habit. It was a habit, like kids have habits. What? You know? I'm like, okay, so what? Then one fine day when he was around five, six months, he gets a full blown convulsion, you know? No. Like all body shaking, his eyes roll back, you know, all you can do as a mother is climb times together. Yes, yes. You don't know what to do with the tiny things. Yes. I thought my child was dying, because that's how it looks like. Yes. And you know, the thing with convulsions is no matter how many times you see it, it's the same pain of the first time. Yes. Because you don't know how bad, you don't know how much side effect, you have no idea. Yes. This is a child who was meeting his milestone. I know he's neck, because I remember one day my dad was like, hey, his neck is a bit, you know? It's not as strong. And you know, we don't like being told such things. True. And it's scary anyway. I'm like, what are you talking about? Yes, yes. So I was like, no, he's fine. You've seen your own thing. Yes. But he caught up. But then after this seizure, you know, they start ma, they start crawling. Right. We lost everything. So I went back to zero. All the milestones he had achieved, nothing. No. So that's when I'm being told, you know, you leave the hospital with a list of tests that have to be done. Yes. And you're like, what is going on in my life? So just to take you back, baby is five months old at this point. This is a five, six months, yes. Okay, okay. So we start first of all, that's finances, because I don't remember. I don't think I had a medical cover. Right. At the time. So you're thinking, looking at ECG, you know, all those things, you know, CT scan, MRI, and you're thinking, 15,000, 10,000, whatnot. Yes. And you're thinking the way you're earning bare minimum at the time and it's not going to work. Yes. So anyway, I'm very, very glad I was working at elite preparation at the time when my bosses, we were like a family, you know, so like, okay, I'll need to do an advance because remember, it was a CS, I didn't plan for. True, true. So that means take you back to zero. These are some of the strains that these medical conditions bring in life that we never foresee. Yes. And we don't see the effects until maybe way late. Absolutely. So we went, I remember after, the day before, I went to take the test, I'm like, I'm not feeling quite okay and my peers have not come and I'm like, let me check. And I'm like, you're told, you're pregnant. No way. And I'm like, you know what? No way. You know, I'm like, I'm ready for this, not for the things I'm handling. Yes. God, this cannot happen. Oh my. Look at that. Just like, no, you can't do this. You know that time? Yes. You're trying to negotiate with God, like how now. Yes. You know, all I'm dealing with, this I can't handle. Yes. And at this point, you've not even figured out what's going on. I've not even figured out. Yes. So I remember during the day now when we went, I have a very special photo and you seated on top of a car and you're looking at him like, how can he be this cute and have all these issues? Yes. So they refused for me, of course, to go in because I was paid. Yes. So he had to go in. Yes. I was just watching him being put in that MRI tube. Yes. It's quite scary. It breaks your heart. Yes. First of all, feeding him. Yes. Because you see, they have high tolerance for a lot of things. Exactly. Yes. So they can control things beyond normal human capability. Sure. So they're trying to put him down. Dude is not going down. No way. No. So they have to... What? Yes. So they had to up the dose until he knocked off. No. And even when he was there, they had to go and top up again because he started moving. No. Yes. He's been a fighter. Yes. That's a fighter. Yes. So we finished that then it comes out apparently he had asclerosis in his head and there is some liquid that wasn't enough in the brain. Okay. Could you explain to us what that is? Asclerosis is like a scar. Oh, I see. You know, a what? Just say he has a scar. Yes. Then they were like, oh, asclerosis is like a scar. And you know, it's not a lot. Maybe over time it will go and for the liquid that we are seeing maybe it will regenerate. Let's give him time. So they were like, okay, so these are the reasons why he's getting the conversions. They were like, okay, so he's going to be put on medicine for the next at least bare minimum five years. No. Yes. Wow. So this is news, you process. Yes. You process your past. Yes. Then you think of how you're going to tell everyone else. Absolutely. And then there's another little one. Then now there is another story. Yes. Now after that you're being told now you have to stop breastfeeding this one. I'm thinking, I've just been told he has what not, what not. You tell me to stop breastfeeding. You know, you're losing that contact. Of course. I feel like someone is taking him away from me. Yes. And anyway, I was like, I have to do what I have to do. But the sad thing is from there it was downhill. Depression. Of course. I had lost a baby between the two. Oh no. Yeah, I just got a blighted over between my first and my second. Okay. So it was like, God, this can't, like you can't do this to me. So sorry. You know, other times there's so many things that go through your mind. Right. So I'm like another child. I went and told my mum I can't, I'm sorry, but I can't do it. I told my friend I want to get rid of this pregnancy. Yes. I can't, I can't, in all sincerity. Everything that's going on is too much. Too much. You know, I went to start with my mum so I told her mum because my mum is and my best friend has always been, I always tell her everything. Even now when I'm being hit on I'm like okay. At least I know her. That's good. Like that's one person who will never leave my friend. Yes. So I told her mum I can't I'm thinking XYZ and she's like please don't. You know, I'm kissy. So there is that culture of boys, blah blah blah. And now I have two boys and she's like you know, I've always wanted I really have one boy now. I'm like just get the baby give me I'll take care of you if you can't if you really feel that. Yes. Just carry to tam and give me. Okay. So I prayed about it and I was like okay God, you know why and however I'll do this but I need you to walk with me. Yes. Otherwise I can't do this on my own. And suddenly like I mentioned that's when So obviously during all this time and all this is happening you still your marriage is breaking apart. Yeah, you're still yeah, you're still fighting that battle. Yes. So you're really working hard to get things going and you're still dealing with all the things. Right. Anyway, I survived through but at week 35 but you know when I was five months I was just in pain, constant pain. I was put on medications from week. Yeah, not week that when I was five months pregnant. Okay. No one could understand I just had pain and my doctor was like I'm doing everything I can I don't understand what is going on with you. Yeah. So I was like okay, so we got to a point he was like, chick, I can't pump anything. Oh no. I can't add anymore. Right. I need to enhance pain. Yes. You know. So he was like we gotta get this baby out. So we're waiting week 35 because I was admitted for like a whole week I think I can't. Okay. And this is when baby you're 20 weeks or they're about six months there about six seven now. Okay. I've been put on pain meds for so long and they're like it's not healthy for this child. Yes, yes, yes. We'll try to manage it. And that's when when I discovered ice cream is actually medicine for the lower abdominal pain. Yes. Mama's at home. Now you know ice cream, ice cream, ice cream. I wish I knew during my time. I was like I used to remember that day I told her I want ice cream it's like midnight. I don't care it's like midnight to be very present. Wow. Oh God. Yes. He was it. I saw him until when he got to that week 35 and I felt like those are totally ill. So they admitted me for a week and they said next week we get this baby out. We're just waiting for time. Okay. So like this hour so I set an appointment. So the actual time would be 35 weeks. 35 when I was I was admitted 34 until 35. So another week another week at home. Yes. Of course that is when the baby is full time. Yes. And then there's still this other baby at home. Then I'm still dealing you're still dealing with medication. And you still have a toddler. I still have another yeah it was a four year old maybe at that time. My goodness. Yes. So I remember I went to hospital around midday captain was reeling this time I said I have to see I'm not doing this story of going waking up to view each other. Yes. I'm seeing everything. Yes. So they agree they're like to be a bit uncomfortable. Yes. So I remember but then looks like my kids get that gumufu because even me going down you know like I said I was fine I can hear them cut you know they you feel just movement and just feeling things then I had the doctor say Jesus Christ and I'm like okay what's going on then he's like you'll be gone both of you. No. So now that's when they found out what was going on so apparently because the cakes came so close remember I had the first 6 months 18 months later bare minimum of yes back to back should be 3 years. Yes. So my womb was opening so all the pain the intensity inside no. the child was slowly getting exposed imagine imagine. Mama. So and he had flown out he had dealt with a case like that in the UK so I was like God comes through in a way I was like I just experienced I've heard of this when I was out there I'm so glad I did because I did not have figured it out Yes. So they were like by that time Yes. I started feeling the pain so of course they had to knock me out now but I'd seen my baby and I was like of course of course yes yes and very tiny it was tiny oh yes it was like 2 kilos 2 kilos you know so cute and tiny yes I was like ok at least I've seen him yes if anything yes and then they knocked me out yes so I woke up and I was like first thing oh baby same story in cuba incubated but at least now I had the experience yes I got out slowly yes and I didn't react to this sedation of course like mothers there they went and saw him he was now in HDU oh my goodness he was the next yes who the next they came and the baby wasn't there no and you think your child is next then yeah yeah have you ever prayed yes that days you pray yeah so every time you go hmm and you look at this tiny yeah human being yeah with so many you know yeah every morning evening you go and your fingers are crossed yes you know no normal incubation yes actually we made it yes because this lady used to meet the baby was out like when she was like four months pregnant and she had to tie the baby and so tiny so that's when you count your own blessings yes because I made it this far yes how good we are like God you know we had a deal yes I keep it to take care of yes so anyway we got out finally but then now you're leaving you have this huge bill yeah insurance is max yes because no implants for high dependence no no implants and for child to be in HDU ataga kan per day I don't even want to imagine I don't even want to until today I still have a debt yes my doctor was gracious oh yeah God's grace again God's grace he always comes through yes anyway take my baby home I still have my pain so they still can't figure of course so the week after that I'm nursing my CS and I still have to see an ufrologist all the gist you can think about right I will sing I go to this minute you tell me all your leg you have appendicitis so we have to get your appendix out so back to theater no oh my back to theater within that week don't go too far this incredible story continues right after this break