This program offers a clear and compassionate look at autism, effectively replacing common myths with scientific facts and a call for social inclusion. It is an essential resource for dismantling stigma and promoting evidence-based support within the community.
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Breaking The Myths of Autism - Untold Stories | The Elevate Show追加:
Hello and welcome to the Elevate Show.
Every single Wednesday night, we sit here and have conversation that sometimes you find them uncomfortable, sometimes it's taboo. But you know, if the one, the only Benjamin Zulu is in the building, we'll talk about it. with her son.
>> Lovely to have you.
>> Today we are talking about breaking the myths of autism and we are focusing this on a mother's story on their journey.
And when we think about autism for many parents this word comes with a lot of confusion, fear. I do not know what to expect. I was not ready for this. This was not what I anticipated. And in most cases, the reaction after that, there's a lot of stigma. You don't know how to explain this to the people around you, even yourself trying to navigate and understand that. True. But today, having this conversation is creating awareness and just breaking down that stigma and understanding. And you know what, the more honest or the more open we are, >> the more readily um we will be to accept the situation and what uh recommendations or solutions are there for us. clearance. I don't know why the father was left out but we >> it is the guest today.
>> But you know in this first part of the conversation you know we can talk about both. Why not?
>> Yes because >> I think it is touching on the realities of what follows after what follows after relationship what follows after we you know we started life. Okay.
We are very excited about the love side how we met stories and you know that part is very glamorous.
>> Yes.
>> But nobody tells us now behind the scenes after you go start life.
>> Yeah. I think when I look at it from the angle of um I look I saw some percentages on how autism has increased over the years and they are staggering.
Yeah. Hundreds percentages that are running to hundreds.
>> Yeah.
>> Those days um it was a very rare thing.
You needed a lot of explanation to bring it to our awareness. But today it is very rampant. It is one of the problems.
People arguing is it increase of population overall but the percentages without even arguing they're increasing which means as we prepare to get children and do parenting start families. This is something these are one of the some of things we need to be subconsciously prepared for. It's unfair to get a child with a woman then because the child came with a condition you run away >> or you take a backseat or you act like she's bewitched or you start bringing exorcists because lack of understanding makes Africans that's like innocent people makes you think that you did you try to abort what did you do are you were you not blessed d because you don't even have the word I told you our language like language or local by the time we come up with words that tells you how well you understand the concept so when you don't hear words for autism when you don't hear words for these neurodyivergent conditions because there are many autism is one of them but there are many yes it just we don't understand and today's a good time for us to prepare for parenting in all its spectral absolutely today's a good time to talk about partnership in bad time in good better for worse this is what it means because we call them boss of joy sometimes before they become bundle of joy because when I read her profile our guest today it's one of four children earlier she also adopted another one >> who is also on a spectrum and I'm like >> this kind of compassion I'm glad you're getting stage to express it that to know this is not a place to run away >> this is she took it as destiny >> yes she changed her life and adjusted but many people they don't accept it they don't embrace it let me tell you another experience I've seen it closely my friends >> yes pre-term babies because sometimes autism is a lingering thing that comes after preterm complications of birth.
Other times you can't explain where it came.
>> Yeah. Some people say it was after the vaccines you know sometimes diagnosed later and we're trying to guess where it comes and what is the severity. But I've seen my friends who the baby did not arrive as expect sooner than expected complicated pregnancy. I saw the love the marriage tested to the to the to to to the end and I I could see them I knew the age >> but it is that time. It is that time you test whether it was really love or it was just sensations. That's why I don't understand what say we started living together. We moved in cohabiting. I'm like where is the covenant life? What if the child say he told me to get a child?
What if the child comes with a condition?
>> Yeah.
>> Do you guys know that sometimes life does not just go in straight lines? This mother was getting babies normal. Then they follow the wife's different.
>> What if you say want a big family but the big family has one person who is different. Before these children can be independent because before we can train them they trainable many of them accorded where they in spectrum and what level of care I'm sure she will tell us more about that they do develop abilities of their own or abilities to cope you know I saw one of the best images handdrawn of New York it was by an autistic boy who was flown with an helicopter for 20 minutes and didn't shoot it with his hands when they so you think it you must be told this is not camera work also another autistic lady has been designing the uh she she's just connected with animal solid as if she can see what they're seeing. So she designs the the the capital deep equipment and half of all the US equipment are designed by her patents.
What she and she's autistic from the beginning. She loved animals and all that. They they have their own world which you need to understand. M is a good time to to sound a silent call.
Stop rushing to parenting thinking about love. How we feel together it is so real. I feel it. Think about the law the long term the children you get. And the other side of the other side of this is somebody said sometimes God hides genius in conditions that we call diagnosis.
>> Some of these children have abilities that are just you know outstanding. But if you don't care for them, if you if you throw them away like the one she was helping because if you weed like that they stand no chance. So I think this is a good time to say I tell people you know this thing you're despising calling wedding that ceremony where people say for better for worse for richer for poorer for sick for health you despise that expression yet it knocks some sense when they try to get married and they went to that home and and the gatekeepers of the home the men start across and they ask you who are you and what do you want in our home >> it knocks sense in our in your sense this daughter we have taken care of her now you are carrying her away how will you take care of her what if the family you are building what is your plan >> I want to address people to stop risking ending this kind of circumstances alone the pain is multiplied >> make sure you follow the process that people can promise why people grow cold feet when you try to marry in a procedure and they run away they they're doing you a favor they're showing you that they were not ready for the real task and I want to ask men in particular to stop making women pregnant so they can marry them stop break stop cornering her and I told them to also stop overdoing Don't send her 20 messages. If she's not reply, don't call to no 72 week call. Don't don't be a weirdo.
Don't don't don't bother me. We can't get at the work because she's refused to talk to you at the coffee and and if she's not talking, she's not interested.
It's a very simple business. I don't know where we a woman wants marriage actually will listen to you.
>> She's also in the market. You can't go to the market and you're trying to the seller of the shoes and they're looking away. They're clinging at you. They're insulting you and you're insisting. This is a market. If you don't sell, thank you very much. Marry a woman is ready because this mother embraced motherhood.
>> Yes.
>> And talk even another mother's child who she drawn away because she was ready.
Brothers this mothering journey one of the my friend couples when they got a child extremely premium where the chances were 80 20 the doctor said don't put so much hopes we do what we can but please um we don't promise too much 20% chances of the woman said verbally I accept this child. This is my child.
give them you know some some some hospitals give you an option there's an option you know um because the bills will go into millions they tell you what what might happen these bills go into millions you you're not sure and but the mother said this is my child this is what God gave me I will be there and I will stand and should be there doing what if you don't have a mother who accepts children like that my brother you will suffer so >> you may say she's pretty you may say you like because of oh this and that these things they go to put in Brazil those things they call whatever They add them you may I hear theyated Brazil I want to sit in Brazil but whatever those things you like and you're following her on the street because it is beckoning you you know as you follow her can she accept a child in this kind of circumstances find out woman who has made up her mind to go into marriage leave college girls they also children they don't know what they're doing you know they easy to to deceive with 500 shillings marry for printing because you said for printing and now she has falling up with you and you have taken for coffee. She has taken pizza, share a pizza, photo, Instagram, my boyfriend pizza. So those girls who can get a pizza don't know what is they don't know what pregnancy means. They even sometimes trouble it so much.
They're not there for you. I've seen men washing the baby doing everything because they got the children with another child. Brothers, stop getting children with the children.
>> Yeah.
>> Make sure you get children with a mother who's prepared to sacrifice like this woman. Not only does she do it for her children, she moves around campaigning for other children. Absolutely. I don't predict that for you. I don't wish it for you. But I'm telling you, the mothering journey, the the body of a woman must be opened to to remove another human being inside there. And then she must continue taking care of that one while he's still healing from that kind of experience. Brothers, let's learn that mothering or parenting requires a partner which is committed because you don't know what life might bring.
>> Absolutely.
I don't know. I I think it's the girls who are not clapping. that those printing papers is a box and I don't know if it's an age thing, Zulu, but where I'm at, it's conversations that I'm willing to have now because I'm seeing it with people around me. I'm seeing it with my friends and it's when we get a child, if we get a child that will need extra love, extra care, are you willing? Are you ready?
Mentally, I know where I'm at with that.
But when you're younger, you don't think about that. It's about love and what you feel about this person. So, it's not the time, especially for the demographic in here. So, the question we're asking you today is, why is autism still treated like a secret in many families? Why is autism still treated like a secret in many families? We're going to take a quick break even as you indulge us on our question of the day. When we come back, our guest will be joining us and I'll tell you all about her after the break.
Welcome back. Welcome back to the Elevate Show. Like I said, our guest today, I hope you guys are ready. We're talking about breaking the myths of autism, a mother's truth. And the question we're asking you is, why is autism still treated like a secret in many families? Wise autism still treated like a secret in many families. NTV Kenya on all of our social media platform. Our plan is also open. Please do feel free to indulge us. Now our guest today is an autism ambassador 2026. She's the founder of Mali Therapy Center. She's an autism mom. Ladies and gentlemen, please help me welcome Pauline Elizabeth Wamukoa.
>> Lovely to have you on the show. And just so you know, Zulu Tuli College St. Wow.
Wow.
>> We are alumnus Kenya Institute of Mass Communication.
>> Yeah. Lovely to have you on the show.
>> Thank you.
>> You've been doing great things. You're breaking news left, right, center, >> giving, giving, giving, giving.
>> Yes.
>> I mean, the recent one was I think in was it around February this year?
>> Which baby Mitti?
>> Oh, yes. Baby Mitti. Such is such a wonder.
>> Yeah. Uh there was a story that was trending.
>> Yes.
>> Of a child in Meu who was caged.
>> Yes.
>> Was actually put in a chicken shed. You know, you know the way chicken the cached is small.
>> Yeah.
>> So I didn't I woke up in the morning and I found I've been tagged in like a millions of platforms. Then I was wondering what is going on. When I went the first thing being a behavioral therapist, the first thing I saw is this child is autistic or uh delayed milestone somewhere and uh I'm in a support group and everyone was calling on to poll in P. So I asked them what do you want me to do and they're like we have to save this child.
>> Yes. So the question, so Eric Mundi was able to save the child, bring the child, but the question was uh all the other cases he's handled. He's able to build houses or start a business, take children to school. So what do we do with baby Mitti who is unregistered? He doesn't even have a first name. He does the the mother gave birth and disappeared. And uh the grandmother has been struggling with a condition that she knows nothing about. So the only way because of this activity is and he's nonverbal is to c him.
>> Yeah.
>> So sometimes you ask yourself should we punish the grandmother or uh should we save uh Mui because the grandmother did the best.
>> Yeah.
>> At her level. I keep telling people actually that boy was very clean. His skin was flawless and everything. So I was looking at uh the positives. So we were able to take Multi >> Yeah. at Mani Therapy Center and he's now able to communicate through signs.
You know, if he's hungry, he's able to tell me he wants to eat. That is uh we took him to a neurologist and uh they have not really put the order in there.
Yeah, you said development developmental delay because of the environment and the environment is such a a big factor in how we raise our children even in pregnancies, you know. So, yeah. So, that was um when I saw him, I have four children of my own.
>> Yes.
>> And I I just wanted to get right in there because >> um it's not just for children. You're an autism man as well.
>> Yes. And having had children, you sort of expect, you know, the flow of things, been there, done that, you know, but this was different. How was it for you? And at what point did you notice that something is not the same as what I expected? It's not as I've raised my other kids.
>> So Mali uh Daniel Marley is my second born. Yeah. Yeah. So the first pregnancy I can say I was listening to Benjamin and I agree with him. I was young. I didn't know anything. I was excited. I was an my child and um >> the milestones I walked through those milestones with my mom actually. So when I got this uh second pregnancy I was depressed.
>> Okay.
>> And uh by 6 months the child was not growing.
>> Okay. So the doctor give you um an option and do we solve the situation or are you ready to you know they give you the options and they're not so good. So I went to the option that uh I thought was better I went for anti-depressants.
>> Okay >> because I was not sleeping I was not eating and the child was crowing >> and at uh 6 months that child had to grow. So uh even by the time I was delivering I was very weak because in the anti-depressants you can't take more than one they will affect the brain development of the child. So uh by the time I was giving birth I was not able to push I passed out. So remember how the pregnancy was and then now this was uh an emergency CS and the child was put in oxygen. So later I learned that now things are better. If a child is put uh in oxygen then there's a chance she'll be told what to do but then there was nothing. So by the by the time he was almost 2 years old, my mom visited and she was like this child is not mine.
>> Okay.
>> And I was working, you know, being a journalist, entertainment, all this. I honestly had no time to even notice there's a difference. And um when the first option for any parent is take your child to school. If a child is not talking, take them to school.
>> We need other kids. Seriously. And you know mothers they're like you you need to add another one so that they grow up like >> take me slowly. What do you mean? That's so >> cuz this other one is in school and whatn not. So we took Mali to school.
took Miley to school and it is in school that uh there was a child who had the autism diagnosis and the therapist called me aside and told me I have a feeling that your son is not okay and uh you need to do something you can go to one to three places but I was in denial I was like no it's none of your business really why are you looking at my child even in those angles >> so but after a here in school. There was no progress. There was no progress. And now he started holding his ears. He had a a leaking gut. He would diarrhea endlessly. He was screaming. He was tiptoeing. We were still on blended food. So I said, "Okay, you know what?
Let me go to hospital." So I went to hospitals who are neurologist and we did all kinds of tests. It is not cheap.
>> Yeah.
>> If you don't have insurance, even if you have insurance, it is still not cheap.
Autism is not cheap. So, we went and we got the autism diagnosis.
>> Okay.
>> Honestly, I locked myself in the room for like 10 days.
>> Yeah. Cuz I didn't know for me, you know, you given the diagnosis and you are told what is it? It is the first thing that I heard from the doctor is there's no known cure. Yeah.
There's no cure for autism. Oh my god. I was like, my son is going to die. Yeah.
my son is going to die and then they're telling you you have to start with occupational therapy and speech therapy >> to speech you cannot go to speech first now I've learned that you can do them okay >> together but you're told you can't do this because he has settled down and I'm looking at this boy he's cal my son wasn't hyper and so I didn't really understand so I went to depression but I think your training as a human being comes out and I remembered research so understand research. I started watching videos of autistic kids and let me tell you those videos are not good.
>> Okay, you go there and you're like okay is it going to come from this to us? You know you see children drooling, you see children uh hitting their heads, you see that is why it is a spectrum disorder.
So, I was able to get an occupational therapist who really walked this journey with me because uh uh my partner did not want to hear that.
>> I was going to ask this whole time we're talking about the man.
>> He was in the picture.
>> He was in the picture.
>> Okay.
>> I do not want to say that I did not have a supportive man.
>> He was there.
>> Okay.
>> He was there. We went to hospital. We did test. But now acceptance is a personal journey.
>> That's true. Let me tell you. Yeah, >> I will not lie that he hasn't been in the challenge, but we accept things very differently. For me, I wanted a solution and a quick fix. My son, for him, he did not believe in that and he opted for prayers and yeah, so I think I've come to learn in life that we all walk different journeys. We all have our our ways of accepting and mine was research and solution solution solution. Him was I think it it took maybe let me just say 9 years >> to ever admit and stand in one of the forums and say that my style is resistant and the reason I'm saying this is because he's speaking.
>> Yeah. So for him every therapy we would go for he would just say can you make my son speak >> when he's told no he will leave me in that moment >> he will go because speech is like the coloring on the pole it it is he has to the child has to get cognition >> has to learn the surrounding has to learn play has to learn feeding so that because what are they going to speak >> where are they going to get words we all learn from the environment so the the kind of support that you had. You know, you have you have uh the father of the child, >> there's a mom there.
>> Yes.
>> You're doing uh therapies. But in terms of community, did you know anyone else that you could talk to that could understand this?
>> Oh, let me tell you.
>> Community is the last. Sometimes we prefer keeping to ourselves, >> okay?
>> Because immediately it is known that we had so many people around us. I come from a big family. I'm the last born in a family of nine.
>> Yes.
>> And I can tell you until today, none of my siblings have stepped in Mali therapy center. L.
>> No.
>> Yes. None. And it is okay. We have come to the level of acceptance that it is okay.
>> My in-laws uh their solution was get another child.
M >> you know if I remember my mother-in-law told me that the only good thing you've given my son is not complete why don't you try and get another one yeah and it was the most painful thing like why do you why are you calling him incomplete there's nothing wrong to your face but I with time I understood that it is lack of information there's nothing wrong with an autistic uh person I think it's just being unkind. You're being nice.
>> Well, there's >> you're being nice. It's outright unkind, but you know, >> it is true.
>> Yeah.
>> But um but you he was also looking out for his son.
>> You get I want my son to have a child. I want their expectations when you are carrying that pregnancy. There was praise. The child was named. They were saying they'll go to this school. And then now when the child comes out and it is not what you are expecting the child is not speaking the child cannot go to school the child cannot eat I love cooking I cook for people all my children birthday I cook and you can imagine you're cooking and there's one child who's under the table under the table because he loves his private space so he cannot eat the food there's so much disappointment and you start facing rejection like that because everyone had the expectation when when uh uh when my son gets married, I have expectation for his family you know but it takes you uh maturity and I think I don't know what I'll call it for you to just say okay let me support them >> so that is where you remain alone that is where you remain if you do not have a supportive partner you remain alone with your child if you do not have finances uh you get stranded and People resort to doing so many things. If you go to Facebook, you'll see solutions for autism are from here to >> the end of the world. You know, we have tried everything. We say autism parents are the best researchers in this world.
If they come to you for a solution, you better have your facts right because before they come to you.
>> So, it's uh the community.
I can tell you now we are building our >> I think you are building you started building that >> I could tell you about I remember there's a uh I did a Facebook post >> yeah the first time I spoke about my son I was actually doing a haram bit to take him to India for stem cell therapy >> and I lost friends oh yes I was removed from some groups I'm embarrassing people yes yes yes it is the reality it is the tangible reality I was remove my very good friends. I I used to call them my kitchen cabinet. They removed me from the group. They were like, "How can you do that to us? How can you embarrass us?
You should have just called us and told us. But you people come to my house and you see I have a problem and I've been telling you I want to do this." So, and in a day in two days, I had every coin I needed to take my son to. And from that I started getting messages from my cousins in Rwanda from who even me I have a child even me I have a child what can we do and that's how the community that's how we started we formed the support group that has around 3,000 parents right now.
>> Yeah >> cuz I said I'm not going to die alone.
No I'm not that kind of person.
>> And uh if someone knows maybe you know people are saying there's no cure. Maybe there's someone somewhere >> who has a cure. Yeah. So, let me go speak up and I'll get help.
>> Absolutely. So, I'd like to just rope you in looking at community, looking at the support system that you have and even you as a person going through as a parent going through understanding this and knowing that this journey because even the solutions the direction that my partner wants to take is absolutely probably different from mine.
You see I'm still stuck at you get a child with a person and it takes him 9 years.
>> 9 years to lord you men are sl >> or so we think maybe they're playing games on us men and somebody takes religious escapism.
>> Yeah.
>> Because the child is growing every day.
Brothers I want to ask us one thing. I think I think fatherhood is tested when conditions are not perfect.
>> It is that father who steps in and leads the wife in the adversity rather than leaving her in the adversity.
>> When a child needs special care, let us men be closer to the case.
>> And I told you I was that friend who any time he could be called by the hospital and he instructed them to call he, not the wife.
>> Yeah. Yeah, >> because the baby is on those things and at night and he's the phone >> and he's wearing >> and he has a brother some of us he could send things like that go do this if he had let the wife who is also recuperating to be the one to deal with potentially for dead his computers were watching and being anything >> I tell you I've seen babies survive because the man stood there >> sometimes they lose the baby but the mother is stronger for the next battle Because the woman stood because the man stood there. I am disappointed when a man is denying and arguing and the baby is here. Men, we don't argue with facts.
We face bullets and armies at war. Let us stop this culture of normalizing weakness. I don't know. Pauline is such an empath. She's not emphasizing the pain she has gone through. She's not even talking how she has healed herself.
She's not even talking where she ever did therapy. Whe how she the mother, you know, talking funny, the husband funny, people have removed her from their groups are the one fundraising. She has she's hinting at psychology me as a therapist. I'm saying that's a pain.
Another wound. Another wound. Another wound. Another wound. But she's here trying to give to help 3,000 people mobilizing them. I'm like, where will this woman heal from?
You know, I think we did another show where she's studying how herself. Yes.
She's evolving as a person because she's been changed to her career. She sent us that profile see changed her career from the screens show they said in the media and you can see she's media like, isn't she?
>> Yes. But now she's doing media for autism, isn't it?
>> So >> yeah, >> how will that loss of the future you had planned?
>> Yeah.
>> And another thing I want to highlight here when you have a special child other children. I like the way she said I'm cooking for my children when one of them may not. So she's balanced mom trying to take care of all that because a special child can draw the parents away.
>> Yes.
>> You guys have seen children are not quite special. They just misbehaved. So they are taken to they are the ones parents go to school for because they have a case every time. The principle is you parents never come for you but the kid who is always misbehaving and being sent home the parents are always coming to case at the office. So they receive more attention effectively more than you who is behaving well.
>> So I like the way she's carrying the whole the whole burden and she was not afraid to take case number two when she's already case number one. Brothers I'm just saying this let us change the narrative. Let us be the men who come close. Don't just go for prize giving day when your son has all the badges best investig my my blood actually I think there's more glory in raising a child who needed to be formed after outside the womb some children are formed inside the mothers need to be formed in India hospital fine raising here you're still forming that child I want to ask brothers even when bills are mounting and you're being given funny figures I want the man to stand there that's what will prove that you are man enough and that's why I was inviting brothers to come on this stage and talk how family went through things and they shielded their woman you shield your girl you didn't let one one lady the the plot was invaded by by this so there was close and the guy went under the bed literally and told the lady to take mongi yamai and put on the door and the chairs so the guys don't break him I think we have that case that's a story I had from from the m I don't read there are men who telling run under the bed they just go under and they start and then their mother start giving them that's what you know she has given you a child is not complete go find another one you give a child is complete I just want to ask us men let us begin another narrative of being a champion in our own homes being present and the men who attending because today men are the majority >> brothers again please clap for us >> men are attending conversations not just as it's not the men are attending real conversations not just a you know this time we are also pioneering piloting life itself I want to ask us women like Pauline will you forgive us the male clan who keep talking about men conference and you're not about the men who run away this time around we are going to be the men who stand in and if you are there and your father left and the the son be there support your mom I'm not saying you have bundled your family but don't don't run away if your mom had the husband run away you too as a son Don't run away. Don't marry somebody separating you from everything that shielded you, that made you. And I think Pauline is also proving sometimes this mothers made us who we are. The father was somewhere in the picture. We are grateful. But the person who made do or die in your life was the mother.
Let's not forget these women who sacrificed this much. Brothers, let's change the narrative.
Thank you. You you you bring out something beautiful, Zulu, and we are not going to ignore it today, but to just understand how you as a person put it together, how you show up for yourself, because you show up for you create a community of over 3,000 people.
>> Yeah.
>> But then when we look back at the people that you've depended on, that you've hoped that will stand with you, they don't. So, how how do you how do you forge forward? How do you show up still representing, still adopting kids, still taking care of other people's children?
>> Uh do you have enough tissue?
>> We do.
>> We do.
>> Well, um I think uh sometimes we avoid talking about ourselves.
>> Yeah.
>> Because the reality is very painful.
Uh this has been a very lonely journey and the reason I went back to school to study psychology is because when a parent comes to money I see myself in them. You know it is a very painful and very lonely journey because first you have to remember how you carried that pregnancy.
>> Yeah.
>> Okay. And then uh the the journey that you just went to just get the child from simple things from eating blended food to eating our normal food >> from not sleeping all night to having now 8 hours of sleep.
>> Yeah. you know, from um this boy from diarrhea having a running stomach for three straight days, not sleeping to now being a healthy able child in a classroom almost sitting for his uh grade six exams.
>> From uh not being able from crying a whole night to let me tell you the reality is is cruel.
The journey is cruel and sometimes we feel like let me just help someone and forget about what I went through because I went through it. I went to therapy. I I had I went to therapy for two straight years just to accept that this is my reality. I'm going to be a lifetime caregiver. Do you know what lifetime caregiver for? That was not my plan. I was planning by me because I had said my sons they hit 20 they're out of my house >> you start living life >> and then now my eldest son is there still and you know that you're going to be a lifetime care thing really bothers me.
>> Yeah.
>> Even when I'm helping and uh I look at that boy and and I'm like sometimes like uh this season now we just got a message today morning that he's not doing well.
is what in school you just he's not able to communicate at the level of an 11 year old.
>> Yes.
>> He's not able to really say what his needs are or what happened. He's having a headache. He's not able. So you just have to every time he comes home you just sometimes I strip him to just check like come. Are they anywhere else? Is he itching? Is your stomach okay? there's living with that uncertaintity that will it ever be okay >> you know.
>> Yeah.
>> And uh right now I'm doing it alone. I separated from uh uh my husband and I can tell you balancing also with this other children because they're also children.
>> Yeah.
>> Do you understand? They're also children. They need your attention.
>> Yes. And uh I traveled for almost 4 years and I left a 9month-old >> one >> because I had to sort out this one.
There there's so much sacrifice. I sold my house, sold my cars because the money was not enough.
>> Yeah.
>> But the what I got out there.
>> Yeah.
>> I went back to school. I got a I became a music therapist. Uh I think for me the kind of person I am is if I find solution I get better.
>> I'm afraid of of not doing anything.
>> Yeah.
>> So if he cannot eat I have to find out what is the result.
>> Yeah.
>> Of him. I didn't even know we had uh mouth what are they called? Uh mouth the there's a specialist.
>> Yeah.
>> That a feeding specialist. Swallowing.
Swallow. I didn't know we had swallowing disorders. Yes. So my son got a diagnosis of swallowing disorder. So he doesn't chew. Even if you give him anything that he's never tried, he will even if it's whole like this. Yeah. He will swallow the whole thing. So you have to give him and tell him chew chew chew chew. Okay. Now swallow.
>> Okay.
>> That so you can the reality then you have younger ones there on your face. It it is it is grueling. And uh my solution is to always sleep. Sleep gives me so much peace. We're even thinking as moms to look for sleeping ps.
>> Well, I have booked my sleeping pad for 2 hours.
>> Yeah. Until you log in. Someone told me you just go and you log in, sleep, pay, leave, and go to work. Cuz Yeah. We don't sleep. We don't sleep because um uh we taught him I remember in December we taught him the national anthem and another song. So he would wake up at 4 a.m.
So you don't know if you want to cry or feel sad or >> or be happy that he's actually >> or you sleep and you know from that time he will not go back to sleep.
>> Yeah. And if he doesn't sleep well just know in school he's going to have issues. So the reality is is sickening.
It's it's a it's not a good reality sometimes. It's not that people don't want to talk about it. It's just that they'd rather deal with it in spaces that they feel safe and people understand them better.
>> Absolutely. And I'd like to also understand a bit more on uh the Mali uh center uh when we come back from the break. Just before we go, Zulu, when Hey, the acceptance is is is there a timeline for that? And because she's she's she's here 11 years later and she's like it's it's thinking about taking care of him all my life is still something that I need to >> accept every day. I accepted yesterday.
Today I wake up again. I'm like, "Okay, yeah, yeah, yeah, yeah. We accept today.
We're doing it again." That journey, is there anything that can help? Is it a shift in the mind? What is it?
>> I think uh Pauline did two years of therapy and that's something worth clapping for guys. Some of us some of us sitted here >> we suffered traumatic things.
>> Yes.
>> But we ashamed of therapy still.
>> So we are so stiff and you want to act like you're okay. Suddenly you lost your parents. Suddenly you are you dropped off school suddenly. Pauline, congratulations for giving yourself some attention in the midst of it all. But I want to highlight this. There's a woman in the Bible whose name is not mentioned. It is a situation that became her name. The woman with an issue of blood. Be careful that you don't become the woman with an autistic child. Be careful that your problem does not become your identity. She has talked about sleeping pads. And I saying that comes close to what I want to propose. I want to propose another space that you're not going with a child.
>> Yes.
>> You're not going with other people. It's just selfare space.
>> It may not be for sleeping. It may just foring something. I want you to find a place where you just appear there and there you're not discussing a problem.
>> Yeah.
>> Maybe it's your media career or you're just doing something girlfriends or if you love nature. There should be a routine in your week and a routine in your day where there is self care. If you don't, you become the woman with an issue of blood. All your quotes, all your posts, all your dialogue become about that problem. And society flows with what you give them. Society likes those those identities that carry a problem.
>> An issue, an issue, an issue. We have issues. We issues. No, there should be that talent. There's another talent you have.
>> Express it.
>> This something people should know that also in another side of life, you are that.
>> Yes. As you form other communities, I just want you to know that you did counseling. You can be a counselor. You just cancel people through life.
>> Absolutely.
>> You just inspire people through life.
Guys, I just want to say this when when life attacks you, don't let it carry who you are. Let let things happen outside.
But your identity and who you are, let it not be carried away. The polling the girl with dreams and then there's a mom there. There's also a counselor there.
That girl should remain buoyant and and and and what was cut go for that therapy now that coaching now that redefineses her life.
>> Yes.
>> In a broad way to redefine her life.
>> Y >> the man who was taking years to Lord finally left.
>> We have announced it. No surprise.
>> But this girl needs to now decide the place for love for her.
>> She needs to make a decision. Don't just sit there. You know guys my situation as you can see one guy was asked by Jesus do you want to be well I've been this way for nobody comes the one asking you is the healer and explaining the problem I'm the solution keeper you see my problem has been so persistent that it you don't understand do you want nine make sure that your the problem does not become your vocabulary >> oh yeah >> I want you to take that space and decide I would like joy I would like a rich life >> together with being a caregiver you have now taken the boy to a place where he has a level of autonomy that he can do school congratulations to yourself Now, can you also now take some attention to this inner girl? That girl wanted another kind of life. Can you now talk to her so that you have more to your children from a place of joy?
>> Make sure as you deal with the problems, you don't sink in them. You pull yourself out and say, "This is who I am." Nonetheless, >> I even have a question for you. How >> great. Ah, fantastic. And we will start the next part of the show without question. Right now though, we're going to take a quick quick break. We'll be right back.
Welcome back. Welcome back to the Elevate Show. We are asking you why is autism still treated like a secret in many families and TV Kenya on all of our social media platforms. And just before the break, Pauline had a question for Zunu before we even open up the floor.
uh the audience to open up the floor to the audience to ask the questions. Uh Pauline, >> how do I separate myself from this?
Because it is a reality I live with in the morning, in the afternoon, in the evening. Uh how do I even find myself in in that? Because I think I lost my identity there >> cuz now I identify as I'm an autism ambassador. I'm a caregiver >> and uh sometimes I even forget the other three children and say I'm a gang giver to an autistic child. So yeah, I've written a book, a children's book. It is about autism. So I thought I was actually finding myself in the same journey.
>> First of all, you should change the language you used to describe yourself.
When you came here, you mentioned the child who is 11. I don't know the age of other children. I want you to start mentioning I'm a mother of >> 18 is among them. The term autistic mom I don't like it because what about other children who who are not autistic? Where is their mother now? No, their mother became autistic mom.
>> Okay. I I would rather you just mom.
>> Yeah.
>> Okay. And then you mention just start expressing you know she's coming from a rescue operation. If she did not do what she did that child might not have headlight. That is true.
>> So she was sucked in to go rescue. If somebody's drowning, you really have to get in there and try to rescue. So what you did was necessary. We are not at all blaming it.
>> As you rescued, as you help them also you know the good Samaritan we keep forgetting.
The good Samaritan the Saman helped and continued the journey >> and delegated the sick person saying I'll come to top up the bed. I've given him when I have a journey which I will not cancel your journey of life. This child also requires you to have a large identity and there are other gifts you have beyond this mothering. So as a child begins to be kind of dependent you can do a show here continue now used to be in the screens go back to the screens >> do your thing nowadays we have free TV social media you can do your and this girl is so she's so camera friendly isn't it >> she's just at peace she's easy with the camera she's not even struggling go back to that element so that now you have that part and this part because it is the the child is becoming more delegatable so the first step is simply change how you describe yourself change that don't narrow it because a rescue operation is becoming more relieving and secondly go now for coaching. There's counseling.
Counseling is more sometimes situation and pain oriented. Coaching is goal and life like a football coach, okay? Or a nutrition coach, okay? Now do coaching to design your life, a blueprint for the second half of your life. As you talk about mom, I don't want to hear that forgetting that you're a lady >> who doesn't want to be wife or lover or girlfriend or just you also deserve romance. Who said no that you don't deserve, you know, to be taken out for dates? who said that you cannot talk about you know you you there are some single guys here and they're wondering now that you are separated sure so I think I would encourage you to now broaden your life you're not neglecting you're just broadening your life when he said I have this sheep and other sheep I have also that's what our Lord was saying this one I have and other sheep also when he left 99 to go look for them that's what you did you let the others go look for the one who sp them you come back and feed the other 99 >> come back but now the rest also you being among them so I'm just saying now go for another coaching this time to broaden your perspective of life >> I love it and the floor is open we'll start we can start with you since you're holding the mic you can start with your name >> Daniela is my name I'm a facilitator of journey to wholeness program which aligns with today's show yeah my heart goes to Paul thank I would like to ask a question. Is inclusion of autistic people in Kenya practical or still theoretical?
>> Wow.
>> Fantastic.
>> Uh I guess yes. Uh it is theoretical.
>> Okay. And uh I want to to it's not even about autistic individuals only.
Disability is uh a topic that most people do not want to discuss even most people in uh spaces where they can make a lot of change. So last year is when we passed uh the disability act which was in parliament for 22 years but >> yes so it's because we pushed and we lobbyed and I thank God that uh the position of the women reply supported us in this. So it is theoretical but uh we have seen strides >> in uh those spaces we are talking about autism here >> you know so yes that's what I can say >> and she have another question okay my name is Mary Joy Wend I'm a thirdyear student in Kenyata University currently pursuing aerospace engineering and also a student leader >> um first of all I would like to begin by questioning we have been talking about how the man is adapting to this situation. How you adapted to this situation? But now what about the other kids? How are they ready and willing to incorporate this other kid who is who has come up has turned their light just made it about him? How what is the feeling of this children towards now the other kid? You understand?
>> Thank you for that. I saw that coming and um I must say that uh earlier on it was a bit difficult cuz they felt uh neglected. Uh I was locked out uh during COVID time for 9 months. I was not able to see my children and before that I was away many years but when we came back we decided that uh every child is going to have a date with me. So Friday I have a date uh with one child on Friday, Saturday and then during the week the older one when she's available we have a date every week and it is mandatory trust me they have it on their calendar so that I can spend time with them. I can just know who they are.
So when we got that balance and the solution came from them because honestly as I thought I was doing enough >> sometimes like he has said sometimes you go to rescue and you don't really >> see the effect uh your rescue uh mission has cost on the side >> and uh we had to sit down and uh I've also engaged them in what I do they I go to work with them so that they can also appreciate that uh the life they living you know is uh is uh is not uh is not permanent anything can happen so they help me uh do a lot of autism awareness >> programs I can tell you my house when you enter there's a lot of information about autism and it helps them also with their acceptance and also accepting their brother they have really spoiled him he's a very spoiled boy he's over loved and uh yeah so what I've is just letting them have solutions >> for whatever issue they're having because I think as a mom I would be a bit selfish when making some decisions cuz I panic anytime I think of disability >> there thank you so much my name is Calvin Juma fifth year medical student in Kenyat University and also an entrepreneur uh and So my question will be in line of finances cuz now from the question that we were we we were asked initially is why uh parents or other people living with people with autism tend to put it as a secret and I think finances can also be an issue. So my question to you is how did you manage to handle all this uh financially? Thank you.
>> Okay. Uh it was not easy. I think I've mentioned that I did haram sometimes being there for people also helps you in a way that uh when there are those changes in the group when uh people are asking you to do 500 please do because when your time comes then uh people will show up so people have shown up for me uh financially and uh I did haram I sold my car I sold houses and I also had to start uh businesses as you're seeing me here. I've sold chicken.
>> I've made fresh juice. I've cooked food and sold. I've um uh I think autism has uh taken all the shame >> from me that I know because when you look at uh speech therapy is 500 5,500 per hour and you are being told you need a minimum of three sessions in a week otherwise you are doing nothing.
Remember you have to do occupational therapy which is between uh 1,500 right now it's 1500 then it was 35 3,35 and then there's also behavioral therapy behavioral therapy is now that one is the cheapest you'll get is 4,000 all these people are telling you minimum of three sessions per week you we are still Africans so you still want your child to go to school so you have like a homeschooling teacher who comes is every day.
>> It is very expensive. So, you need to have a a plan. You need to have a financial plan to get to be able to access therapist. I am glad now with the disability act, we have the disability card. And if you have disability card, you can go to Kate and have free therapy. You have also level four and level one uh medical centers that you can also go with a disability card. That that one is is at least helping us.
There's also cash rep which uh we've been complaining because it's 2,000 only but you will I will say 2,000 only but then if you gave me that 2,000 >> you know. Yeah. So the there you have to look at your community. You have to look around you and you have to find ways of you cannot autism cannot allow you to be less. That's what I can say in place.
>> Thank you. You see have one more question.
>> So thank you. Um my name is Barak Kanga an alumnus of the great light academy and my question for you is uh how is the approach of churches in Kenya and the government to uh autism and if they approach it on a lower scale should they like boost it or what should they do? Thank you.
>> I love that you're covering all bases today.
>> Yes. me. I was just out of touch.
>> Uhhuh.
>> Yeah, that is a conversation. I've even written it on my Facebook. Yes, I was called and I was told I am not welcome like this. I was told because >> and uh I was those people who were sitting uh for two reasons. One got separated.
>> Yes. And two because my son was uh let me just say a nuisance in other I was told uh we when I was married there's we had a specific sitting position and uh they could accommodate the boy accommodate because of them changing church yes I'm not I've written it on my socials >> but when the separation occurred I was told one, we are not going to be able to allow your son to be interrupting the services and two because uh this man the one who brought you to this church, he was our son, you're not welcome. Those were the exact words. That thing pained badly.
So, but on the other side, I've gotten a new church, >> a new family. I go to Nairobi Chapel, Long Road, and we even have a class for it's called Enzy. And uh anyone who's watching this and they're looking for a church, please come to chapel. They have provisions for parents, for children, and you can come leave your child and go attend service.
Yeah. And uh the government the government is doing a lot for us.
Yes. Uh the once the disability acts was passed we have now persons uh living with disability not only um autism getting tax uh exemption. That is very good for them. For any adult they can start a business. they can we also have a law where every company has a percentage of person with disability >> we have seen that buildings are made to be disability friendly friendly there there's so much that is going on and I am very happy because when I got the diagnosis things were not like that so I am hoping as we continue advocating as we continue pushing as we have more women in uh positions and power like uh CJ then we are able to make great strengths when it comes to God.
>> Yeah.
>> Yeah.
>> Yeah. That was not Christlike.
We have >> which church I was trying not to go there.
>> Look follow me. Look for that post. It's >> your post your church.
>> They even sued me >> and they told me to Yes. They told me to to pull it down.
>> Pull it down and apologize on that platform. And I still did another post and they said, >> "They're telling me to apologize, guys."
>> Your handle, I'm a journalist.
>> What do you your social media handle so that they can follow you on there?
>> Uh, Pauline. Just look for Paul on call.
>> Pauline Elizabeth Mali Therapy Center Mali autism. Yes.
>> Okay.
>> I think this will be our last question.
>> My name is Damaris Cavete. I would uh I am an event organizer and I'm helping Pauline organize an event that is called All Colors are blue a family hangout for caregivers. But uh the question that I would like to ask her today is uh the discussion is around why they kept a secret. I believe there are so many myths out there around autism. I would want to hear have you experienced such and what would you tell any other parent that is experiencing such things have been talked about h both from uh the medical aspect from the traditional aspect from very many things parents are told so many things is that something that you've experienced and what can you tell >> any other parent that is bringing up a child with any disability thank you >> thank you very much okay before I go to the myths I just want to say maybe this is where I would have started that autism is a neur neurodedevelopmental disorder.
>> Yes, >> it is not a disease.
You do not require medicine to treat it because there's no known cure and there's no known cause also. And uh what does it mean? It means that uh the brain is developing at a slower pace than any other child. I've said this so many times. I look at an autistic brain as a brain in a pod that has not been exposed and once it exposed it learns colors, it learns language, it learns feeding, it learns all this because we have said that the environment is very important.
The meats, yes.
I was married out of this country. So I was told that the you know Yes. So that was the myth that the reason why I was not eating from that point is because someone looked at me with bad eyes from my in-laws sides and sometimes you tend to because if you see the way they know they're treating you like >> hey you need to pierce me >> you know yeah some there's that there's also that you have spoiled the child >> you know people uh have assumed that autism is for rich people it is before they would say it is a rich man's disease. How come we don't have it at home?
>> But we don't have it in the villages or the the because there's no diagnosis there.
>> Yeah. There's no language business.
>> Yes.
>> So there's no and the stigma there is so real that no one wants to talk about this. It's a taboo to even have a child with a disability. So who is going to tell you mine has a disability?
They don't. As long as it's a disability, they all categorized as one.
So there's that. There's also that um >> maybe the family did something you know like um you guys have money so how come it's one child who's like this did you sacrifice the child's voice honestly I was like there's something like sacrificing the voice >> there are things that I've heard that I just uh that really surprised me and also when it comes to the medical aspect I learned that even doctors are learning from us Mhm.
>> Okay. When you are told there's no known cure, there's no known uh diagnosis, there's no known uh cause.
>> Yeah. You understand that even as you're going to the pediatrician, they look at the character traits of your child and they'll they'll make a there's there's no scan that can tell you this is autism. There's one that can detect down syndrome very early. Yes, >> they're making strides but none that can tell you okay your child is prone to have >> autism.
So even in the medical field the doctors are still learning. There are others who will tell you just wait but you see we've gotten to the level where diagnosis can be done as early as 18 months.
>> Yes. So all that I think is just because of lack of information.
>> Absolutely.
>> Um thank you for that question because I think it answers um the question of the day. The whites still being and Mitti's case was one of those ones. We do not know what it is and because they are their behavior is erratic. They are violent. We're just going to catch them because we can't communicate and all of that. But having gone through this journey on on a personal level, walked with other moms as well, what would be the thing that you would want the world to know or maybe idea kind of thing or even the community as well? What would that be? What would that thing be for you? Uh for me uh it would be that we don't want to be to be we want to be included.
>> Okay.
>> Okay. include uh okay uh I've been told to >> oh you caught yourself you say something >> I'm a good student I would like to ask the society >> the community the government the churches to include persons living disability to include autistic individuals in their planning when you're making a budget when you're planning for when you're opening a school please have a learning importance when you're planning for Sunday school for for other children please think of the neurotypical children of the CP children of the down syndrome children where do you want this families to take them >> and the reality is really bad you can see the numbers are surging >> and men also need to take part as much as uh my partner was there then >> there are very many families that where women are raised using the children on their own. And the worst thing I I love giving numbers. So I have 35 children at my center right now and only two are girls. Oh, so who's going to raise the boys for you?
>> You see? So men need to be to take part in the raising of the families. It's very important as as even if we have separated, he has to see his children.
Yeah, >> it's very important for me to have that uh the father angle >> in the children. So, >> uh that is what I would say and also to tell the parents do not be afraid. Early intervention is the key.
>> Yes, >> autism is not a disease. M >> with early intervention with therapies be sure your child will speak be sure your child will fe will feed well be sure your child will sleep at night will toilet train all those things are able to achieve if you start early >> absolutely >> yes thank you so much for that Paul Zelu >> I'm glad that uh we we are managing to bring Pauline to to expand her personality and now that it's not just about her but all of us >> to remind us that there's something we said here another day that I wish it was not true but I'm discovering day by day you see glamorous people you see people living life you admire them but when you come close you realize we have battles we don't talk about >> sometimes people like Paulina have been forced to really talk about their battles >> because it's visible but some of us have a silent battle that just something like low self-esteem that we keep mentioning casually on WhatsApp status we keep mentioning posting anyhow don't sit with it sometimes She said um autism does not allow you to be broke because it is demanding it pushed outward to become creative and to shed off the shame and just do whatever she has to do. I think we can we take her challenge and identify our own struggle and then get out fiercely against it as if you are saying this is the battle for my life. I must get out of that poverty. Some of us is just the dysfunction of the families we come from that you can't even build anything. Anytime you build they come carry away. They curse you for having money when they don't have it. They cast you right to to do anything you know I just want you to take her courage and she's naturally soft she's not that kind of person who would shout people off like me I can tell you off that's my nature >> this lady can't when the church said oh so you have written we are going to she wrote another one you know but she's not that aggressive that it means this don't matter you just have to be strong in what you want we this is my my my parting note to us that struggle you have we came here to tell You you have a struggle. Other people have a struggle. Don't let it swallow you. Let it let it just harden you in the sense that you lose shape. You stop holding back. Get out there. Create yourself. We are living this life once. You're not going back other years back. This is the only time you have to make your time count. Stand up and converse it. I used to have an addiction to gambling guys.
I'm here. I no longer gamble. I used to have an addiction to women. I do that. I used to follow to believe I am to marry.
I stopped that nonsense. I used to live with a boyfriend.
Get out of that nonsense of your own and give it a name. Eventually, you will reclaim your freedom back.
>> Absolutely.
I have nothing else to add to that. That is how we end the show. Thank you so much Pauline and Elizabeth for joining us today. Thank you Zulu as well for always putting us in our right lane and you know imparting wisdom every single Wednesday and for amazing audience today. Yani Leo by the way guys. Thank you so much for coming through. Yeah, look sharp and all the questions were really amazing and your engagement as well. Our audience at home as well as Antennis for choosing us every single Wednesday at 9:30. See you to see you next week. Same time, same place. Adios.
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