Raising a Boy with Autism: A Journey Through Stigma and Strength

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0:59Welcome back to the To Be A Boy podcast with me, Elliot Ray. And me, Jolie Braley. So today's episode is one that I think will sit close to the heart for so many families. We are honouring the uniqueness and brilliance of boys with autism, while also talking honestly about the parenting challenges, the learning curves, the emotional journeys and the everyday wins that often go unseen. To help us do this, we are truly honoured to be joined by somebody who embodies advocacy, persistence and compassion in everything she does. Deborah Ottobambo is a mother of three, including a brilliant 21-year-old boy with autism.

1:42She is a childcare lawyer. She has previously worked in schools as a child protection and safeguarding officer. She's one of my wife's BFFs and an all-round super human. Debbie, welcome to the podcast. Thank you. That was a nice introduction. I worked on that. I worked on that this morning. So your son is 21 now. He's a big man. He's taller than me. But when did you first notice something was different? And how did you go about getting the autism diagnosis?

2:17Deborah Otubambo:Okay, so it's an interesting one because it was obviously a very, very long time ago, but Malachi was actually nonverbal. So it's very clear that there was, I guess, quote unquote, something different or something wrong, as some would have said at the time. But I didn't necessarily know that there was something, you know, wrong. It was just, that was my son and he wasn't talking by the age of two. um I remember him having his two-year health check and the um sort of health visitor suggesting that I take out his dummy because he had a pacifier at the time so I immediately took it out and thought okay you know well that might be you know what the issue was um but speech didn't necessarily come and um it was from then that I thought right okay let's stick you in nursery maybe you need to be around some kids your age and that would help um and very quickly well he started at one children's centre did not get on at all absolutely hated it and um after a week I sort of said this wasn't the place for him got a call a few weeks later from another children's centre and within about six weeks they called me in and was like okay we need to have a bit of a chat and we've noticed that you You know, there are some challenges and we'd like to refer him to a place called the Donald Winnicott Centre at the time, which is where you'd go for assessments for things like autism.

3:45So that's how I sort of had it confirmed, if you like, that there were challenges and differences. So from there in regards to getting like an EHCP and support through an actual formal diagnosis, how did that work?

4:02Deborah Otubambo:oh wow so at the time it wasn't an EHCP it was a statement of special educational needs so we're talking way back um but the process took some time so obviously he had to get referred he went through observations and I think for me I was expecting them to rule out a diagnosis it wasn't sort of yes we're going to go and confirm he had autism I was like well we're going to go and they're going to prove that there's nothing wrong with him so you don't know what you're talking about that was my sort of stance at the time um so it took a long time for observations it felt like there were meetings and hospital and clinical appointments every single week I mean it was just it was ages um by the time he did get a diagnosis he was diagnosed with um what was called complex communication disorder and again me being me um you know bold 23 24 year old at the time I challenged that and I was just like well what does that mean disorder means permanent this isn't going to be permanent what you're talking about sort of thing and um you know they basically explained you know what it meant so now if you think about autism it's like this blanket diagnosis and so many things come under Asperger's ASD but then it was complex communication disorder which essentially I guess has been merged and considered as autism now it's the same thing but it just had a different title.

5:28Deborah Otubambo:I didn't accept a diagnosis at the time, so I accepted that there were challenges, I accepted that he needed support, and I was more than willing to, you know, work with the professionals. But I personally chose not to accept a diagnosis for various reasons, which I'm sure we'll touch on. But one of them for me, I felt really strongly about the labelling theory and not wanted him to be labeled and just boxed off as autistic and done so I was very careful about how he was you know referred to and what was written about him I had to see every single report and nothing was allowed to mention autism you know but over the years that's obviously changed but that was my stance at the time.

6:13What do you mean over the years everything's changed do you mean it's changed in that you now have to have that included in order to get your EHCP or do you mean you would you would if you were diet if you're you had a child now that was being diagnosed you would want them to you would want it to say what is that that's a good question I

6:35Deborah Otubambo:when I say everything's changed now I think now I'm more I've become over the years more open to what a diagnosis means and what the condition means. But again, at the time, it was very much, he's not autistic and that's that. You were not allowed to call him autistic. You have to remember, Malachi's 21 now. We live in a time now where autism is so common. There's so much support, so much resources. There's so much awareness, which is fantastic. But at the time when my son was growing up, It was me. That was it. I didn't know anyone, any families that had anyone with autism. So it was such a very isolating time.

7:19Deborah Otubambo:Not only was it isolating, it was unknown. We didn't know what this was. And so the explanation, and I know we're going to touch on this slightly later, but the explanation for it at the time that I was told was you've been cursed. so you can yes it was you've been cursed this is spiritual we need to pray it out you know so if that's what you kind of attach to this diagnosis you don't want to accept that you don't want to accept that you've been cursed you don't want to accept that this is a result of the devil or something wrong that you've done and a hex has been put on you as a consequence so for me it was as my mum would call it an evil label this label I did not want to be attached to my son and of course you know you know now with you know education and with time it's absolutely ludicrous so people hearing this might think what on earth but this was how many years ago when it wasn't as rampant as it is now and certainly within my community both African and religious it was just not something you know you knew how to handle so that was that's what I mean when I say over the years it's sort of changed and it's like right okay you know in reports it will mention that he has autism but in the first first good six seven eight to probably even ten years no there was nothing reflecting that he had autism so it listed all his challenges but it certainly did not have the actual diagnosis in his reports apart from the official diagnosis.

8:59I just wondered because I have actually had somebody ask me this recently they have a certain with autism and they were questioning whether they wanted to go through the process to get him diagnosed so that it was on the report because they felt like you that he would be stigmatized and they knew he they know he's autistic but he's managing you know he's he's just about getting by in school and they were wondering whether it would make things worse for him if he then was labelled. And there were a group of us sort of talking about it and the advice from other people who had children with autism or other special educational needs was, he's going to be labelled no matter what.

9:44And so you're much better going through that process and getting the EHCP, the funding and the support that you need so that you can have that behind you because no matter what happens, your child will get labelled because he's different to the other children. So just get what you need to be able to support him. Absolutely, absolutely. And that was me as well. I initially refused the statement.

10:07Deborah Otubambo:Like I said, it wasn't the EHCP at the time. And I initially refused to have this statement of special education. I was like, no, no. But then when it came to choosing schools and not getting the school that I wanted for him, I very quickly was like, OK, I need this statement. So I definitely agree. Get the support that you need. I think for me at the time, it was the wording. It was how things were worded. It was how he was described. But ultimately, that didn't change the fact that the challenges were there. You know, so everything was still there. It was just that I did not want him specifically labelled as autistic.

10:44Deborah Otubambo:it going back now would I change things absolutely because I think that it had its pros and cons I think my stance at the time some would say I was delusional some have called me all sorts of things um it helped believe it or not because it like I said it was it was me myself against the world and so having that armor of delusion really helped me with you know my advocacy it was the fire and the driving force for me to keep going and to be able to challenge with so much confidence at my young age. I think now where we've got so much more awareness and so many resources available in such a large community, you know, I don't want to say that there aren't any challenges, of course they are, and they always will be, but they're not identical to the things that I faced at that time with that stigma and that shame, if you like.

11:35Deborah Otubambo:Again, like I said, coming from, you know the community that I did come from um so I would definitely say if you've got if a parent has a child wherever they find themselves on the spectrum because that's that is what it is it's I like to describe it as a train if you think about the different carriages people fall within those carriages and even though it's it's a train it's a spectrum and each person finds themselves differently in those carriages get that support the diagnosis doesn't change who your child is I wish somebody had said that to me at that time, you know, because it was like I said, it was very much sort of attached to this really negative idea of what they might be.

12:19But actually, it doesn't change.

12:21Deborah Otubambo:So whether they're called autistic Asperger's, whatever, they are still who they are. and essentially you still need that support. So for me, I would definitely say get the EHCP, get the diagnosis, get the support that you need, make sure everything is in place because that is what will help you along the way. And you spoke about getting into the school that you wanted. Talk to us about that process because we've spoken to parents and educators and teachers and are aware of some of the challenges that just boys in general will face being more likely to be expelled from school how the education system isn't necessarily set up for the way the way boys learn and you know boys in general are having a tough time at school now but I can imagine with the additional challenges of autism and neurodivergence that is increased so what kind of challenges did you face in regards to helping Mao through the school system?

13:20Deborah Otubambo:Yeah I mean And so, like I said, I had the statement at the time and what that does is that, which is essentially like the EHCP now, the new version. What that essentially does is it allows you to identify a school of your choice in providing that the school can meet your child's needs. So where you would get, you know, your admission process normally, you'd have to pick six schools. With the EHCP, you can name a school and say, I want my child to go to school X. providing that that school can actually meet the needs of your child say for example if you've got a child that is blind you know you're not necessarily going to send them to a school where they don't teach braille or do you know what I mean like they don't have the provisions for your child to safely get around so it's providing that the school can actually meet your child's needs insofar as that they can then you are usually going to be able to get a place in that school of your choice.

14:18Deborah Otubambo:So the EHCP is beneficial in that respect. It also legally requires the local authority to adhere to certain things. So say, for example, my child required speech and language therapy because he was nonverbal. And so those provisions were put in his statement at the time. And he was able to get, you know, so many hours of a speech language therapist each week he had a one-to-one learning support assistant with him that was able to you know support him to access the curriculum he had his sort of special corner if you like away from the class where he could learn independently with his LSA so yeah accessing the support having that EHCP is crucial you know a lot of the times local authorities will try and say that the child doesn't need it but actually the threshold to apply for an EHCP is relatively low in that it simply just requires the child to may have special needs it doesn't mean that they have it may that is the first sort of hurdle to get over which is relatively low and then once the assessment is agreed then you have the relevant professionals that come and do the assessment as to what that child might need as part of that EHCP.

15:41Deborah Otubambo:Sometimes they refuse it, so they do the assessment and then refuse to actually issue the EHCP, which can, you know, always be appealed. But then the onerous then becomes on you to actually prove as to why they do need it. Yeah, and I mean, I have a lot of friends that are going through this process. And actually, when I go out and talk to, do talks, I get mobbed by parents who have children with special educational needs because they are struggling really really struggling and so many are being refused DHCPs now because the local authorities cannot afford them so they're just their blanket response is no and then they expect you to push and push and push and push and of course when you've got a child with special educational needs particularly if you're a single parent you don't have the energy or the resources all the time to be able to do that and so you know the people that need it the most end up in the worst situation possible.

16:36It's probably worth mentioning that in the budget, actually, the recent budget, it was announced that the government are bringing all spending for special educational needs into the central government part. So they're taking it away from local authorities, which I think is a good thing, actually, because it means that local authorities are refusing it because they can't afford it. Now they're taking, the government is taking accountability so hopefully that will improve things but at the same time the government are also talking about taking away each eHCPs entirely so there's a real mess happening at the moment and parents are caught right in the middle of that mess I think you know my motto at the time was suffer now enjoy later and I live by that and I literally sacrificed

17:25Deborah Otubambo:absolutely everything. You know, I had Malachi at 20 and sacrificed my entire being. And there wasn't a day that I didn't cry. There wasn't a day that I wasn't stressed. I still have anxiety because, you know, of my experience, but I'm able to look back now and see Malachi at 21 working, fluent in his speech, picking up his sisters from school when I'm unable to do it, doing things that I never dreamed and could only pray that he would be able to do because of the push that I kept pushing because of the motivation and that was my motivation that one day this should hopefully all be over and I'm not by any means you know being unrealistic because I in the sense that I do appreciate that for some families that's not going to be an option because their children are so profoundly on the spectrum you know they require 24-hour care I do completely get that and you know there isn't really anything that I can say to that apart from just access those support groups you know get that respite protect your mental health do what you can to keep going not only for yourself but for your child in the best way possible but for me I think that sort of mentality of suffer now enjoy later is what really got me to where I am now so for parents out there you know reach out there there are communities out there there are podcasts like this there are other podcasts there are influencers out there really sort of um bring into the forefront and bring into life what autism means and they have their own communities there's lots of great people doing great things to support families now and I'll always say appeal appeal where you have had an EHCP refused appeal there are great charities that you can also access like Ipsy who I used to volunteer for and they can help you with appeals as well so I would always say appeal there's lots of resources that you can gather now and help you with your journey.

19:31We will add those to the podcast notes some of the charities that you can contact but I know that I mean the number of appeals going through local authorities at the moment is extraordinary and they get to the point where they may force you to go to tribunal and if you take them to tribunal you win like nine it's something like 92 percent cases is successful but you need over five thousand pounds to be able to do that so you get to a point where you own the option i know loads of people in this position your only option is to go to tribunal but you need five grand and where are you going to get five grand from when you can't work so you've got a child with special educational needs so you went completely stuck and although there are charities supporting people obviously they don't have that funding to people and also i mean we do the one in four children are out of the school system at the moment um and the vast majority of those children are children with special educational needs divisions in school don't exist either so it's because the budgets for schools have been slashed although when you have an ehcp it gives you that child essentially is worth more money to the school than other children that money just gets sucked into the big used for other things of yeah so the there isn't the support in the schools either so again I know so many parents whose children are completely out of the school system are school or school refusal because they go try and go to school and things happen like I have a friend who has a child with autism who was late a lot because he really struggled in the morning understandably to sort of get himself ready because there were certain things he had to do in order and if any of those things didn't quite work he'd have to start the order again and then he would get detention because he went into school late so of course he was just being punished and punished and punished and um so he's now school refusal and he's fallen out of the school system and she's a single parent and she has no clue what to do or how to help him and nobody's helping her she says she's tried everything she's been to the local MP she's been everywhere nobody is helping her and she's falling apart so I'm just really keen to lay out the reality because I thought to so many parents and I know you do and I know that lots of that will be listening will be like you know they're broken completely broken and the system is in such dire straits at the moment in terms of school in terms of funding in terms of the local authority that unless something drastic happens soon I really do you know I really I don't I don't know what many of my friends will do I I honestly know how they they will cope much longer in the situation they're in.

22:14Deborah Otubambo:Just to jump in on the the tribunal what I would say is Ipsy are really good their website has uh model letters so even if you're not actually able to get um a volunteer to help you with an appeal they have model letters on their website which can give you case law up-to-date case law which will give you templates in how to issue these appeals yourself and like you just said once you get to tribunal you win anyway and lots of times local authorities will concede before you even get to that stage so that's a tip in that a lot of the times parents are sort of deterred because they think well they can't necessarily afford it you don't have to have somebody represent you to do it you can do it yourself and Ipsy are really good in the fact that they have these model letters on their website they have the case law that you can actually quote and they it gives you almost like a step-by-step guide in how to do these appeals so I know that it's it's not the sort of um magical solution to everybody's sort of prayers but it is one step ahead of perhaps those who who may not know it at all so it's definitely worth going on that website and looking at those model letters yeah that's really helpful thank you so I've spoken about when we were having our first child just how nervous I was about potentially having a boy first just understanding what they could potentially face being a black boy growing up in and around London and you know just being judged differently you might be just living your life you're a good boy but trouble's gonna find you some some way somehow and I was pretty nervous about how I could support him in navigating that and you know you had Ma at 20 boys go through trials and tribulations in life and when you're a tall black boy um there's there's lots of challenges talk to us about some of the things that you've like done some of the concerns you've had the challenges and some of the things that done to help him like navigate through school life the ups and downs of of this world yeah so school was a really hard one so Malachi got bullied all throughout um secondary school and I sort of in year eight I thought right let's move him to a new school did that and he got bullied in that school as well um he is tall he's 6 '1 at the moment he's and he's broad um he's probably weighs about 15 stone.

24:51So secondary school, just growing up as a young black boy was really, really hard. He was from London. He wasn't your stereotypical black boy from the ends, as people like to sort of look at it. And where he didn't fit in with that sort of crowd and image, he really tried to mirror it. So a lot of the times, you know, people on the spectrum um they're good at masking and they're good at mirroring and so he was able to kind of try and mirror and mask and and behave the way that you know the other children were behaving and that worked against him as well because it was like oh well you're a big friend you're this you're that and again you know with him being so vulnerable he didn't really understand the sort of implications that doing that would have on him anyway do you know what i mean so there was the the issue of you know him doing things or being persuaded to do things in exchange for friendship so that was always a fear of mine that you know growing up being in an estate being where we are

25:59Deborah Otubambo:it my my aim was always we've got to get out of here we've got to get out of it because like I said I had so much anxiety um I never wanted him to go anywhere independently unless I was ordering a taxi for him or I was taking him myself you know he didn't have any friends you know he thought everyone was his friend but they weren't his friends and for me I think one of the things that I did to try I printed these autism awareness cards that I made for him which basically said I have autism sometimes during a meltdown I might display these characteristics I'm not being rude I'm not you know I'm not a danger please can you call my mum and it had my name a number on it as well and I put them in his wallet and I was like right if ever you're stopped by the police or if ever you have a crisis you know count to 10 breathe and ask this person respectfully I have something in my wallet please can I give it to you so that they can then call me he's never had to use it thankfully but there was a time where he had his phone stolen and he was having a complete meltdown in the street and apparently everybody was walking past him and it's really weird because I had this intuition like something was happening and then I suddenly got a phone call from somebody in the street and she was like is this Malachi's mum I said yeah she said your son's crying he's just been mugged and you know so it lots of these kinds of things that he wouldn't necessarily know how to navigate himself as a parent with somebody with send you often try to foresee all the waste worst case scenarios ahead of time to try and mitigate them But of course, you can't you can't think of absolutely everything.

27:43So, yeah, definitely, you know, bringing up, you know, a young male doesn't just have to be a black male, just bringing up a child on your own anyway, especially when they've got send. Words can't describe how difficult it is. You know, it is a constant, constant battle. There's always something you're worried about. There's always something you're thinking about. There's always something that, you know, you think, OK, we've moved from this challenge. What are the next hundred challenges ahead of us? The friends thing of my two girls, especially my eldest, like friends are the world. You know, there's always something going on with friends, good or bad.

28:20It's just like it dominates her life. And when you said that, that like Mao didn't have any friends, even though he had friends. How did you cope with that? What did you do to support him and yourself?

28:32Deborah Otubambo:listen i have i have researched like is there a befriending service can i pay somebody to be his friend i think you can in japan you know they've got in japan they do that they have people that are just friends they need to do that yeah you can get paid to go for a walk with someone yeah yeah i've tried everything everything you can think of what can i do can pay somebody to be his friend is there service is it this you know okay my friends who've got friends the same age can we get them together it's just you know what can you do I've tried to speak to him about friendships and what meaningful friendships mean and over the years he's gotten better in that you know he's more I suppose accepting of being just you know on his own and not trying to over stretch himself you know because he would have kids that you know you top up their lunch the lunch cards for like 50 quid which is supposed to last you you know a good few weeks and you've come back and there's no money on it how oh this person asked for a coke that person asked for that why have you bought that for them all because they said they wouldn't be my friend if I didn't you know that kind of thing so it was heartbreaking it still is you know at 21 knowing that he doesn't have actual friends you know he's got work colleagues who you know he says hi and bye to but they're not his friends um he now attends like a sort of a day center for young adults um with special needs which goes to once a week and so he gets to socialize in that respect there's this um neurodivergent sort of social group he attends like once a month and you know they all meet up together but they're not his friends you know so I had some concert tickets a couple about a month ago which I couldn't attend I said oh Mount you know do you know this artist he said yeah I said would you like to go to the concert and he said oh yeah but who will I go with and that was heartbreaking because he didn't have anyone to call to say do you want you know I've got front row seats to see Keisha Cole do you want to come and he ended up going with my sister he still had a good time but how much more of a better time would he have had if he had some actual friends to go with do you know what I mean so it's heartbreaking it's one of those things that I really don't have a solution for because if I did I would have resolved it by now but it's it's an ongoing thing and I just you know continue to talk to him and say okay you know there are some apps that are there for you know people who want to make friends you know sign up I'll help you navigate it and sort of you know filter out who is potentially genuine and who's potentially just disingenuous but it's what can you do it's it's an ongoing thing it's an ongoing worry that you know you just hope one day you they might just meet one good person who's their friend and they latch on to them yeah it must be so tough i have a friend of mine who has uh also some with autism and he doesn't go to school and he spends a lot of time online and doesn't he also doesn't have friends because he's like chronically online he's you know he plays a lot of games and he's in a lot of forums and he's talking to people online a lot and that's his way of building any sort of community and getting any sort of interaction with anybody that isn't his mum and of course she can't monitor that 24 7 as well so it worries her like what is what he's engaging and what's happening online does mal spend a lot of time online thankfully he doesn't he doesn't he's not really a big gamer but also i completely hear what you're saying because there are a lot of risks There are all sorts of people online and you don't know who you're coming across.

32:16Deborah Otubambo:I've, you know, known people whose children have faced some challenges because of people that they've met online. He doesn't spend his time online. I try to keep him as busy as possible. So, you know, he was going to college. He does work on the weekends. He's currently doing some seasonal work with the Royal Mail as well. So whenever things come up, I try to put him in them to keep him busy. But when he does have periods of when he's not working, because sometimes these are short term contracts. And again, let's face it, it's very difficult for people with additional needs to gain employment.

32:56I'm nowhere saying that, oh, yeah, that's a solution because it's taken us years to even get him into work. But when he's not sort of occupied with those things, I did also put him on an online IT course, which is what he's doing at the moment. I put him in a baking class to learn how to bake. So I'm constantly looking for things for him to do, which, you know, sometimes you run out of resources and being able to pay for those things. You run out of energy in being able to actually even look. And sometimes I'm just like, Malachi, I'm sorry, I don't have the mental capacity to deal with this right now.

33:31Like I've got a million things that are going on with me, myself, and I can't, you know, extend myself. I'll take a breather and then say, right, OK, what do we do now? So, you know, it comes in waves. You know, I don't have a cape where I've got a solution to absolutely everything. But I really do try to to keep him as engaged as possible. I think as he's gotten older, it's becoming more harder now because when you're younger, you know, there are lots of things. certainly when we were in Hackney, there were lots of things that were available in terms of activities. But when you become an adult, particularly where you mentioned, Jodie, you have a friend whose son is coping, so they weren't sure whether to get that diagnosis.

34:14When you find yourself in that gray area, so you're part mainstream and part send, there's almost nothing for you. Everything's sort of thrown at those who are quite severely on the spectrum or you're mainstream so you're fine then what happens when you you're still vulnerable you still need that support but you can also do things but you just need support because we've been told we're not these exact words but we've been told he's not disabled enough to access support but he clearly is you know because he's vulnerable and you know all the things that he's able to do now have come with sacrifice sweat and tears not because they're just things that he's naturally able to do.

34:54He's learned how to do these things over the years because of the structure and the things that have been put in place. So it is really, really difficult. And I sort of go day by day. It's like I wake up, how do I feel today? Do I have the energy and the capacity to do this? Then fine, yeah, we'll tackle it. If I don't, it gets parked and we'll deal with it another time. That's the only way that I can survive because I can't break down. I'm not a machine and I do have two other children that I also need to be healthy and available for. also thank you for sharing all this Debbie because you know like you Jolie when I'm speaking when I'm out there when we're doing our groups we get a lot of inquiries a lot of dads who have kids with autism and they are really struggling with it all and I think just hearing you talk like that and hearing how you've navigated it as a mother to an older son now hearing how you kind of protect your well-being how you know you look not too hard on yourself you do what you can I think that's going really, really help people listening.

36:18a.ms slash college pc let's talk about culture so deb you're nigerian that's nigerian heritage and as you said at the beginning of the podcast the conversation around autism in the uk has changed dramatically for everybody but we know there's still stigma and of course there was stigma 20 years ago in the black community in the african community talk to us about when mal was young when he was getting his diagnosis and when you were first spotting signs what was the vibe from the people around you what what was the kind of narrative they were talking

36:56Deborah Otubambo:about and how did you deal with that oh that's a deep one um like i said you know i didn't know anyone around me that had autism or had children with autism we didn't know what it was um it was you know and i looked you know i was a single mum young single mum and i looked to my mum for answers for everything and you know I come from a really big family and absolutely nobody had any um you know troubles with speech um and so my mum was we're heavy was heavy in the church still is and her thing was right okay well let's you know let's go and seek um spiritual counsel or religious council and um you know we okay fine that's what mum suggests that we do you go to your man of god priest pastor whatever and it was you know told to us multiple times that it was um a curse um and specifically because of something i had done and um you know it needed to be prayed away, that it's a spiritual thing.

38:09And that was all I heard, that it was, you know, it was a curse, a curse, a curse, a curse. And so for me, it was, I associated the term, the diagnosis as very negative, because that is what I heard every single day was you are the reason, you know, you've done this. I think there was also this, oh, you've cut his hair because before he's won, so that's done something, or you've offended somebody. And so they've put, you know, a curse on you so that you, you know, you won't be happy. He'll frustrate you. It was just all negative. And, you know, it was prayer every week during the week. It was fasting.

38:48It was holy oil. It was holy water. You know, we went to Nigeria when he was about four. This was the first time I took him. And I remember my uncle was quite an elder, one of the leaders in his church. And I remember he had two other prophets that were with him. We were in a room and there was like a bowl of water and some candles that were lit around. And we were told to kneel down and, you know, they were just praying aggressively in Yoruba, praying to rebook this spirit that was supposedly in him.

39:23Deborah Otubambo:And, you know, I'm there crying, holding onto him, really believing like, you know, let's remove whatever this is because, you know, I'm young. What is this kind of thing? And I remember, I remember Malachi was nonverbal at the time. And I remember him trying to get away and I'm holding him down. And then he said, help. And I was like, that's it. Stop. Stop this BS. No, no, no. You know, so that was one occasion. I've also had my mum, as she had suggested, we go to South Africa to a certain church there for deliverance. I agreed but then I can't remember why that fell through so we ended up going to Jerusalem went to Jerusalem on a Christian pilgrimage to pray and there was one day where I you know we were going to climb Mount Sinai we were climbing from midnight and you know I was sat on a camel for three hours, riding in the dark, you know, going up Mount Sinai, got to the very top, literally said a prayer for two seconds because we then had to start climbing down because it was just too hot by then.