Unpaid care work, Guardianship and Legal Capacity: Exploring the experience of women with disabilities within the global pandemic
Recorded April 21st, 2020
Full Audio-Text Transcription
Hello everybody thank you so much for joining our conversation in PAZA. PAZA a Swahili word meaning to amplify is an initiative by This-Ability Trust seeks to document and create visibility for the experiences of women with disabilities globally. We look forward to hearing from you so remember to show your support and feedback on your social media platforms to continue this conversation please follow our Twitter page @PazaPodcast
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Now let’s get into today’s topic of discussion
Lizzie: Thank you so much for joining us this afternoon, and today we wanted to discuss the role of unpaid care, work, guardianship and legal capacity, particularly exploring the experience of women with disabilities within the global pandemic. And we are very pleased that we are able to be joined by amazing speakers who are amazing champions for children with disabilities, and I will let them introduce themselves. So can we start with you, Silvia, could you introduce yourself please and the work that you do?
Sylvia: Good afternoon, everyone. My name is Silvia Moraa Mochabo. I am the founder and the speaker for special needs persons. I’m a graphic designer by profession, a mother of three boys, two of whom are on the autism spectrum. And raising the children is exactly what led me to do what I do in terms of advocacy.
Lizzie: Great, thank you very much, Caroline, would you like to go next?
Caroline: Good Afternoon. My name is Carolyn Makana. I’m a mother of three boys, my eldest son, Ethan being on the autism spectrum. I’m a lawyer by profession, and my husband and I also run a school here in Nairobi for special needs kids. And I’m pleased to join you this afternoon.
Lizzie: Thank you very much. We have the team from This-Ability joining us as discussants Maria Rosa, would you like to introduce yourself, please?
Maria Rosa: Thank you, Lizzie. Good afternoon, everybody. I’m Maria Rosa. I’m from Ecuador and I’m the Project Manager in This Ability.
Lizzie: Thank you, Millicent.
Millicent: Good afternoon everyone. My name is Millicent Ojwang, Operations and Admin manager This Ability.
Lizzie: And Clarence.
Clarence: Hi, everyone. My name is Clarence Okune Media Officer, This Ability Trust
Lizzie: My name is Lizzie Kiama. And I am the Managing Trustee at This Ability Trust, and our work really is to advance the rights and inclusion of women with disabilities in Kenya. So to get into it, Sylvia, you run an organization. Andy Speaks if I’m not wrong, yes.
Could you tell us about what led you to start the organization, some inspiration behind it, and you’ve alluded to it, but please give us some more detail.
Sylvia: Sorry for that, so I am a single parent just to add on to that. And starting off this journey was a bit confusing at first, the minute you get the diagnosis, and you do not know where to start, who to turn to where this came from what this is, because most of the time it is progressive. In my side of the story, first we had Compulsive Disorder before we discovered that my son, my, my second child, who’s called Andrew, was on the autism spectrum. And by the time I was being given this news already pregnant, it was actually almost the same day with my last born who after his birth, Also we saw that his milestones were delayed, although he’s one not as severe my son spoke at five, and the journey by the time I could get a grip and get evaluation, and actually get to see the right doctors in the sector, the journey of actually getting him to school because you would be accepted and admitted into a school and after a while, you see there is no progress, then that comes at the demand from the schools. Then when you see people parent teacher conferences and you’re being looked at like they cannot handle the child anymore. They don’t understand what’s going on. So let’s just say the journey was a bit frustrating, coupled with trying to get through a divorce at the same time. was not one of the easiest things. So I tried to find my way through that forest because that’s what it felt like you’re just put in the beginning of the forest and you’re told, let’s meet on the other side. There is no mark, there is no thought just figure your way out.
Sylvia: So when I said in the tried to figure out how the journey had been, I wonder how many of the parents are going through similar situation? How is it across the country because there was also the stigma that comes with it in the social setting, and also within the families. And we did within the school setup also because by now the children could see that because of the development we’re also getting frustrated. And apart from that, I’m a prayerful person. So I kept receiving this message of Proverbs 31, 8-9, which was speak on behalf of those who cannot speak for themselves and fight for their justice.
For me that was it back in 2018, I knew deep inside, I used to do social on social media advocacy and just talk about what autism is, and not many people actually believed that my son was autistic because he looks like a normal child. And that’s how slowly but surely got to connect with other parents and by the end of the 2018, and my sister also has a child who has Down syndrome. And I spent some time with her. And I finally decided, Okay, when I was I didn’t need to be with the Daily newspaper. And from there the with this story came out, you know, when you take a retrospect and look at the story from the outside, that’s when I was now everything made sense about the conviction of doing something, the Bible, but the experience that was going on around me, and that’s when I decided okay, so because the title of the article that was done in the daily nation, that was the last day of December 2018 was my son finding calls me mom. That’s how the name and Andy speaks came about. So we want to be the champions on the ground and the voice for persons with developmental disabilities.
So it’s not only just autism, but the full neurodevelopment disorder group two, just looking at the rules and regulations that are there, there is a lot of lack of inclusion. And at the same time, look at the education systems, they’re not sufficient schools. When we look at the health system, it was quite a daunting task to actually find a doctor who knows what it is that you need. So you sent from one place to another before we could find out what was the best intervention for him. And so to see how best this could be corrected, I decided I will take up the mantle and to the Andy speaks for special needs persons Africa. We started the work for advocacy so that parents can come out We can enter stigma because we are better. I’m in bigger numbers and indigent government and other bodies that are responsible for looking out and setting policies for children so that we are also included in all the decision making that is going on at the moment. So that’s in summary what this is all about and how it came about.
Lizzie: Wow. Thank you. Thank you so much. That was amazing. Thank you very much. Caroline Could you tell us about your experience, you know, both from a professional and personal standpoint.
Caroline: I relocated back to Kenya. I lived in the UK in around 2008. At the time, my youngest brother was very ill in the UK. And I had just had my son, Ethan my first son. And after about 18 months in after he was born, I noticed that there was a bit of a of a difference with him in terms of his receptive behavior, you know, playing with other children, there was something that was different.
But because I was so overwhelmed with my youngest brother being ill at the moment at that time, I sort of put it behind my mind and said, Look, when I get to Nairobi, I’ll feel what’s wrong. So when we came back to Nairobi, I then started sort of researching to find out what was wrong with my son so he went to see our pediatrician and he said, Look, your son seems to be on the autism spectrum. And I was like, What is that? So then we were referred to the gate roads in Muthaiga, and we went there. They run a program called a Special Educational Program, which involves different professionals, occupational therapy, speech therapy, pedestrian, and they sort of sit with you in a room and they assess your child, and, you know, try to figure out what might be wrong with the progression of the child.
So after a meeting, I was told that Ethan is autistic. And I think that was the hardest, probably one of the hardest days of my life. And, you know, the first question you ask is, you know, what do we do about it? Is there any medications? Is there any treatment for it, and then you’re told there’s no treatment. So then that that’s how the journey began. And, you know, sort of getting back and trying to settle down trying to figure out life. And I was a single mother at the time. I was lucky enough to get a, a job locally in a bank and you know, getting child care the time was also difficult because your child is nonverbal. And just getting people who understand how that how that works. It’s very difficult. You go to work, you come home, the child is very unsettled. But eventually, by God’s grace, I got a very good nanny. And then we got a really good routine going. So I was raised. At that moment, I was settled, and then subsequently joined the judiciary, and I had to travel a lot, but thankfully, I had a really good nanny at home and a really good support system.
My parents and my siblings are very supportive. So that allowed me to work and focus on on on providing with ease. And as the years went by, you know, he was quite stable. He was at a school in Nairobi, and he had settled in quite well. So we had a good routine going on. And I felt like he thrived from that. And just that stability and the structures really helped and then also put him on a good diet that had been suggested for him. So hyperactivity reduced, and so that was good. So subsequently, I met my husband about four years ago. And the funny thing is that he had actually volunteered and worked in the UK at a school for autism. And as God will have it, he also had a dream of starting a school and so he did I. And so it happened that after Ethan had been to a few schools, and we just felt so So we’re not getting the support that we required for him, we decided we’ll start out on it just started very small in terms of like a homeschooling environment and then other parents joined as well. So down the line, it’s been very, very fulfilling to see our children coming into our space and just being able to benefit from whatever my husband learned and what he knows about autism and other children as well have joined with other conditions, cerebral palsy Down syndrome, and it’s been very fulfilling to be able to do that and also, you know, sort of have my career going on at the same time. And we also have two younger boys as well. And it’s, it’s been a it’s been, I think, I think finding out that my son was autistic was the thing that turned my life round. Think he made me the best version of me I’m pretty lucky and privileged to have him as my eldest son. And I think I think that’s, that’s about it in terms of the journey so far.
Lizzie: Great. Thank you. Did you have any prior experience with disabilities before your children? Sylvia?
Sylvia: Personally, no, never. Not even like in where we were leaving. Before growing up, I knew I’ve only seen one person, but you know, the African culture most of the people just random as that’s a mad person and stuff like that. So literal respect is when you’re like, actually this person could have been that person could have been, you know, to sit here and part of the strife that came in the family when there is a lot of the finger pointing of escape from your family. This came from your family, you know, because it’s usually reaction after the diagnosis.
Lizzie: Right and yourself Carolyn.
Caroline: When I lived in the UK, I did. We I lived in a very closeknit neighborhood. And I think while I was I was raising my son, a couple of people at our church did point out that they thought maybe he was on the autism spectrum, but I didn’t take In sort of serious, thought to that, being that I was already, you know, going through the issue with my brother, but thankfully where I lived, it was a very open thing. You’d see people on their wheelchairs and my brother was also in a wheelchair because he had multiple sclerosis. And when he went into a care home, I also got to interact with other people with disabilities. So I did have some personal experience on that level. Yeah.
Lizzie: Okay, thank you. Um, just a follow up to you mentioned the school. Could you tell us the name of the school and, and well
Caroline: The school is called Haven cottage and we are located in Kileleshwa
Lizzie: Yeah, okay. Okay. Do you have any non disabled children in the school?
Caroline: No, at the moment we’re doing purely special needs.
Lizzie: Do you think it’s an environment that you would bring in non disabled children? Do you think it’s something that would probably add value to them as well.
Caroline: We’ve had, we’ve had vocational training. And we also have a holiday training program.
And we’ve partnered with a friend of ours in ICT and she’s a family ICT consultant. And we have to after the normal time is over, we usually have a two week vocational training program, where we integrate our children with other children. And, and, and they and they get on quite well and it’s been very, very, very great to see other children learn about children and special needs and learning to be more inclusive. Learning to be more patient. Just seeing children grow up, you know, having that mental capacity to be inclusive, this is very special. And I think when we start now, it will become, the stigma will go out the window. And I think as we’ve been raising our children with really, you know, seen a little stigma and countered a little bit. But when you’re more inclusive and more open about your own story about your own journey, I think people are more understanding and more inclusive. And not talking about it is really very counterproductive, I think. So we’re very open and we talk about it a lot.
Lizzie: Great, thank you. So in this situation where we are social distancing and isolating. I’m wondering what your experience has been in terms of the burden of unpaid care work some of the things that you do for your family As women as mothers, could we have a conversation about that? And if you think it has increased that burden, you know, in this difficult times has it reduced having? Do you have support at home, you know, is your partner at home? Do you have extra help from family and things like that? So I’m just wondering, from your perspective, is that something that you feel comfortable sharing. What’s going on?
Sylvia: It’s everything has gone by tenfold in terms of, you know, you had routines before because children on the autism spectrum thrive on routine. And right now, okay, it’s easier now because it’s been a month for our family right now. The fact that we are all now bundled up living in an apartment setting makes it even harder because the space we’re playing is not there like they usually go out to play over the weekends. So they’re not seeing their regular weekday routine. They’re not seeing their Saturday routine. They’re not seeing their Sunday routine. So it was like every their world came to a standstill. I’ve seen regression in my son regression in terms of now there’s no therapy because he gets speech therapy and occupational therapy from school, which is subsidized. So you can’t even think of calling in the therapist to the to the home because of course the risk of exposure. Personally I was so panicked because when this means broke out. I just had a meeting where we were at an award ceremony with very many people from everywhere, and had a personal contact with with an in- law who had come from London.
So that’s mental debilitation on fear that oh my god, maybe I carried it. I picked it from somewhere. So it took two weeks first of all to settle mentally. I was so scared that I personally started seeing symptoms and my son was recovering from a flu. So on top of the flu, the fear of women going into a hospital was also heightened. I was like, No, I’ll just this medication review this before. And because you’re trying to keep saying teenager who’s come and home and he’s not following a timetable, because he thinks it’s totally they totally the time and you’re like you need to continue with your studies. Business was interrupted majorly because I’m self employed. We’re the first ones who got to hit where we have just organized a medical conference special children 6500 special kids, which is supposed to happen on Saturday, this is Friday with everything is ready . Oh, then you’re told it can’t happen. So by the time you can consolidate all these cancel with suppliers cancel with people’s schools, children, busses. So let’s just say my life was upside down for a bit. Then now you start adopting and you have to be a teacher, you have to be the doctor. I still have to be the mother and all this the point because now all of a sudden there is no income stream because so I’ve tried to find solace currently by I use my graphic design skills to communicate and push for the advocacy and awareness to doing posters and caricature. So that is now where I found my Sanity and stability because I’m locked up. The Kids Are All I have a child with ADHD major who settling down of the window we’ve had so much broken items in the house that you can’t shout anymore.
So you find you’re using so much energy trying to control these children because the level of meltdowns are intense. Andrew wakes up screaming from morning to evening, he’s nonverbal. I can figure out what he wants you to try to give him everything. And don’t know if he’s sick because he can’t express his emotions. He only has three words, which will be more of items like I want this or he will just give you one more to figure out the rest of it. And let’s just see if I haven’t gone crazy so far. God is great. And is trying to lead right now up to try to come up with a different routine. Yesterday I was being a teacher and a therapist, today am trying to sit in the office. So you see when you have routine you have time for you For self care, during the regularize your mental state. And then for a front liner like myself, I still have other parents who are looking up to me for support or. So you have a lot of burdens to carry, but like to say we’re women are expected to be able to sail through everything.
Just trying to restructure and see what we have to do and see was an extremely good day, no drama from morning to evening. This is one month later. So today’s is Me time, not really me time is my day at the office. So that way I’m able to balance myself. So when I’m here, I’m able to deal with other parents and also try and cause working on proposal to how to support and be a support system to them. So we’re working on that. Remove this coat and become mommy.
Lizzie: Wow. Thank you. Thank you so much for sharing. I don’t know how we can lift you up as well because you definitely. You definitely need lifting. I will lift you up in prayer.
Caroline: That’s a lot to bear
Lizzie: Caroline, would you like to share?
Caroline I can totally relate with Sylvia. Keeping the kids keeping them structured throughout The day every day in the same environment is very monotonous. And you also feel very anxious. So you can imagine how they feel like our eldest son, Ethan, I find he thrives with monotony, it’s very interesting. He, he’s very secluded, he doesn’t mind being secluded to do his own thing, as long as you structure him and give him activities throughout the day. He’s very okay with that. We’re very lucky that we live also in the same place where the school is, so we have a lot of space for the kids to play on the playground is, is sufficient. And we have a garden and we have dogs. So I feel for them. I when I look at them, I don’t feel like they’re anxious or they feel like anything is missing.
Although a couple of days ago, they did get into the car and said, You know, we’re going and they wanted to leave and they wanted to go and you know, they were screaming the heads of the toddlers especially, but Even even the eldest seems to be quite settled. Because we have all these materials, he’s doing a bit of music, then at the moment you’ll go and play then you’ll do a bit of gardening then before you know it, the day is over. And and and we just we just rolling with the punches, taking it a day at a time and, and just enjoying our family time together with their dad myself. And thankfully, we have an amazing nanny for the toddlers and a manly for Ethan. So there’s a lot of support and everybody sort of able to take time out for themselves and just do what they need to do. And I do feel for Silvia, I wish she could bring the boys over and they can all play. But now with the social distancing, it’s really difficult because everyone is sort of just keeping to their own space to reduce an infection. So, so far, I feel like we’ve managed quite well.
Lizzie: So the next the next question was about how the children are managing their solution, but you’ve kind of talked about it in your in your last response. But I’m wondering, I’m wondering, in this current situation, are there any opportunities? We’ve talked about challenges quite a bit? Do you think there are any opportunities and could you share some tips with mothers or guardians that are also going to you know, similar, a similar situation.
Sylvia: Sometimes, you know, you can try to see through the smoke but the smoke is so thick that as much as you try, you’re just waving your hand and you can only see like 10 centimeters from where you are, as there is the good side is because you have spent time with your children, you realize things you didn’t know about them and you get to see Like new developments that maybe have missed, you know, your attention because of the usual busybody we are. So that’s one thing I’m grateful for. And trying to be a teacher as much as it’s not my cup of tea because of my level of patience. And for sure, because it can’t be enough. I can only teach adults children is not my cup of coffee.
But the other way I say we look into smoke is like we had tried to develop a routine whereby after two days, I’d put the kids in the car because they’d start saying we go to the car we go swimming. We go around, you realize okay, they’ve noticed that and and read things out loud, like That’s the hospital This is our routes to doing this. We make small plates together. But then you see now the government also throws in the spanner. We right now we have limitations of how many people can be in a car, you know, so I think in my case, yes, my nanny can’t leave any of the children behind. I can’t go on my own. So I have to come with my eldest because he’s now like my support system at the moment when it comes to caring for them. So when they say that, you see without considering us it’s quite a blow. So what are the other thing that I tried to do is take them to I spoke to their school because there are no people there. So I take them there with the bicycle and then they at least they have the place structures they go and drum there. So there you go. You just, you know, just you as a family, and you’re walking with your hand sanitizer like to liberate the goddess Don’t touch they will not attach. So that was just a dream. So you have to just weigh your wrists and trying to determine you can do but then we have to do we have close and now I’m trying to leave with adopt to the new environment and the challenges and embrace them. And the good thing that I can say that has come out of it is also now I think my neighbors are not shouting at me anymore. I am not getting mode of keeping it down, especially after the feature we did on TV the other day, because that means our awareness has gotten out there people are trying to see and they can understand what it is we are going through. So I’m just hoping that it will not end no it will end now. And even after when by forgive arises people will remember that the children as to who they are, and they still need that love and understand. Yeah,
Lizzie: Yeah. Amazing. Thank you. Caroline, do you have any tips, any opportunities that you’ve seen?
Caroline: I think the change has been hard for us who we have to admit, you know, sort of being cooped up in the house, and only maybe stepping out to do grocery shopping or essential, you know, purchasing of whatever is needed. But what we did as a family is that we made small adjustments for the children’s schedules, so they don’t feel overwhelmed and then you know, try and do fun things together. If we’re baking with big together, they’ll make a mess, but then we get to spend quality time together. And then, you know, just going on YouTube to see what fun things we can do. We have extra toilet, toilet roll, you know, the toilet roll holder, the brown bits in the middle. We use that to do a bit of painting and a bit have creative stuff. So the kids have really enjoyed the quality time and just us being home a lot. Although for us, it feels like okay, our routine has been changed, but I think the children are thriving a lot from it. And I’m also enjoying the time and the quality family time. And I think the children are more settled when they see you at home, and they’re getting all that lots of TLC from you, I think I find that they enjoying it a lot. So although we feel overwhelmed in terms of you know, being uncertain about tomorrow, I think this is a faith walk, we just have to roll the punches, take it a day at a time and just do the best we can.
And you know, take all necessary precautions like Sylvia said, walking around with that sanitizer and sanitizing every two minutes wiping down the house, you know, with Jik and cleaning up all the time. I think that that’s a bit of the anxiety that we need to manage The best way we can and, and probably also, you know, minimizing on social media, what you know what message is out there, what news is out there and just trying to see what making you be anxious at the moment and just trying to minimize, and then, you know, what you’re striving for what makes you happy and sort of increasing more on that as well. Yeah. And also, what we’ve been doing is, you know, lots of phone calls, lots of video chats to regularly Connect, say with the grandparents, other family members and other close friends as well. So that’s been very helpful for us.
Lizzie: Thank you, um, has either of you, just to follow up on the tips that you’re sharing has either of you seen has had access to targeted messaging that caters to your children during this during this period,
Sylvia: I think like Gemini so we like especially for apps and stuff like that. Or this could be you getting a lot of like speech therapy programs being being thrown your way in terms of I know I got from Gemini I got from your speech bubbles or something like that. But the thing is you get so excited because you’re seeing an outlet like hey, something’s I can do something they can do that who built them, you know, because now, electronics have become more like a comfort. So you have any more screen time as much as they think we should be reducing. Some of us that’s the only time you will be able to take arrest for so. That’s what they want and they learn different minor, heavily visual and sing along is the thing but then controlling all the time. So with this one as much as you want to engage with them. Once you start filling in information to get somewhere, then there is a big price tag on it. Of course, finances are tight. Okay? on trade everyone but for us, in my particular family setup, right? Right now we cannot as much as it is important. It feels more like a luxury to just get to write to ensure that they have everything else that they need, what messages are coming, and maybe maybe one of the other things on the tips that we see is that they’ve seen a long games trying to match and now for the kids to be singing and try to use the online other free online tools for parents to use to get them engaged because anything visual actually gets a
Lizzie: Great thank you Caroline you want to add on that?
Caroline: I find that the more screen time the kids have, the more like our toddlers, they get very anxious and they want to constantly be on the screen on on the iPad on the phone. So for us with just when the weather’s bad, then we try and do a lot more activities like, you know, something, they can do practical things in the house, but we really minimizing on the screen time. For us, we find that it’s just not been very good for them. It makes them a lot more anxious, because then when we introduce other other activities, they’d rather be, you know, sort of on the screen, as opposed to doing other practical activities. So we’ve just been focusing more on the practical activities for now. I think that’s for them as been created a lot more stability and kids are different. And what works for us may not work for other people, but we find that that works for us.
Lizzie: Are there any initiatives that are targeting families with children with disabilities or you know, families of persons with disabilities? I’m curious I am I’m not sure what is available out there.
Caroline: I think if you look at the international media cause it depends on where you what which platform you’re on. I’m on like on social media that you will find we have advisories on how to handle and how to try and deal with the children at this time. But locally, first of all, the, I think we’ve been segregated for lack of a better word as the neuron diverse community for a very long time. If you look that yes, we’ll talk about the blind like that, but our children are not being considered. I see, only the past few days after the President announced about funds is when you’re seeing a lot of discussion around disability. But then if you look at it till from there is this a survey that I’ve been doing for the past one week, and the question that most parents are feeling left out is even as this discussion is coming, there is so many people suffering. You know, we have parents who lost so Because out of the many groups that is all I’m saying is this frustration frustration. And we actually have a platform where we’ve seen nothing to do with COVID to be posted here is just support of each other because it’s also becoming so much and it’s so negative you already have enough for in my house we only watch like the briefing to know where the numbers are. And we get back to like our time taking off this one likes this this
Lizzie: Thank you, Carolyn.
Caroline: I haven’t seen much locally. In terms of support from the government, for families, with children with disabilities, or families and grownups with disabilities as well, people living with disabilities, and I have been wondering, you say, see, for example, my son did get the COVID. And, you know, he was required to be admitted, you know, how is the structure on the ground for, for children with disabilities? How are they supporting families? Are you allowed to go and stay with each other? Of course, you’d have to, I mean, there’s no way around that because they can’t even manage our kids without our help. So all those things do go on behind our minds. And we worry we do worry. Because, you know, apart from dealing with a normal day to day things that we have this particularly a thing that we overburdened with on a daily basis, you know, And I think that mothers and fathers who are taking care of children with intellectual disabilities are really at risk of increased mental health issues because you know, we don’t have an outlet, no one’s talking about it, no one’s following up for you. We have our support systems, maybe with the family, but a lot of people are burdened by themselves and keeping information to themselves and just feeling a bit overwhelmed. Because, you know, we also feel like, you know, that many places and really, sort of supporting us like they should. And I found in the UK when I lift their parents, they have a proper social welfare system going on. And they really do care about their people and they care about their disabled more than anything. And and they do put proper structures in place and they support you financially. materially and they’re they’re not here, you might be unemployed and you have to support this child and you have to be there and their care like you said unpaid care work is just, it’s it’s like nothing like you’ve ever experienced, especially when you have a child with a disability, it’s it’s really challenging, it’s very hard. And the services, the services are just aren’t enough and, and, you know, we really, really just need to stand up and come together and, and just really push for this agenda. But you know, as it is, I feel like the government is already struggling to manage the situation and you know, they’re not really sort of thinking about the nitty gritties of people with disabilities and how that work. I think when they’re faced with that situation, then they deal with it, but in terms of, you know, I plan for us I’m not sure they have one really
Lizzie: The levels of preparedness within our governments are, you know, it’s very clear that we we are not prepared for crisis situations otherwise, for me it I think it would have made sense to ensure that the most vulnerable in the society is taken care of, you know, we start with that as a default setting and then build on top of that
How do you as mothers, with children on the spectrum, how do you support them to ensure their autonomy and that they’re able to make, you know, decisions?
Caroline: Children with special needs have different capabilities regarding their own decision making. But I feel like they can make choices with support. And that’s really what we’ve been trying to do with our mission and the children at the school. So we have quite a few older boys at our school and what we’ve been doing is just trying to get them to learn life skills, because I think that will be the basis of how they will be integrated into our society. Because at the moment, there is actually no plan for our children in terms of how they will go out there and how they will live their lives. But if they’re able to support themselves and learn a skill that we’ll be able to help them in, in regards to, you know, being able to, you know, be structured and support themselves.
I think that will be, very important and key, and we need to start doing that now. I have a friend who lives in the Netherlands and we talk a lot about autism. And, you know, he tells me that they have industries there, that and companies that only hire people on the autism spectrum, for example, and they have a proper social welfare system, proper infrastructure that works it, you know, impeccably if the bus is meant to be at 10 past 11. It’s here 10 past 11 and our children thrive on routine, and if we had such a structure, it would work but you know, in the absence of such a structure, we just, we’re just managing the best way We can and the reality is that we will have to be our children’s support for a very long time. But if we can teach them to be more self sufficient and to be able to do things for themselves, then you know, they will begin to know that they can do things for themselves and be able and are capable of doing a lot more than, you know, people would imagine that they can do but with encouragement and support, and that constant, you know, pushing and, and, and encouragement and just routines doing the same things over and over again, they will be able to do things for themselves. So, you know, one day they might even have families who knows and they will be running their own businesses, I think they could be very good entrepreneurs as opposed to being in employment. And I think that’s just how we see it. And that’s really what we’re doing in terms of being able to support our children in decision making for the for themselves.
Lizzie: Thank you. Thank you, Caroline Silvia, do you have any thoughts?
Sylvia: Um, for me at the moment considering the stage I’m at with my kids, that is we add the pre, though it’s now that they’re grasping the concept of understanding there is yes, there is no, that I I have a voice also. So as much as we are trying to give them the freedom to know that yes, they have a voice. We’re also trying to teach responsibility at the same time. So as you as they’re trying to communicate what they want, give them options with repercussions that you to get them to understand like at this time, I want to play and I want to go outside so you try with the simplest way to explain to them that you can’t go out because XYZ and try and relate it to something they’re familiar with. So this is just the beginning of molding. Then for decision making skills so that they’re able to make the wise choices. My youngest is easier because his truck is starting to communicate faster since we put him in a special school. So he understands the decision. So you can give him options like either this or that. And he’s, he’s able to articulate what it is that he wants. So mostly the challenge will be with Andrew. But when it comes to the future, I am I am saying that let me work so hard to see an influence policy and structure so that it is so inclusive that if anything happens, God forbid that I’m not here, at least I can rest in peace, knowing that there are structures that will sort of take care of the children, because not everyone will embrace him for who he is. Not everyone will understand that he would be slower to process like questions and the pressure that’s around. So if we do it now, and it will mold the future generations to be more Understanding and to embrace difference, then that means the future will be brighter for them. And so we pray that at least there will be some change in the community.
Lizzie: Great, thank you and to piggyback on the policy advocacy, what would be, you know, some of the best ways and some key messages that should be disseminated now, and possibly in building this critical mass that we’re talking about, you know, the strength in numbers.
What can we do in our various spaces to amplify the situation of children with disabilities in this particular context? Sylvia
Sylvia: The moment I think as, as we’re trying to speak up, if we could get back up in terms of let’s see what we exposed to the media platform we’re championing so that at least the media is more inclusive trying to explain what Corona virus is in there, and that you could have people who have access to media to amplify and give, give a voice because this is sometimes when you’re a lone ranger and you’re trying to shout, you can shout or you can, but not many people will hear you. Of course, they’re more heavyweight than more experienced people in the field. It’s a time where we have to come together as one, right? Because if we continue with the divisions that already are even in the disability space, from personal experience, we will expand for unity. It’s time to advocate more and harder, be in the spotlight be known. You know, despite the thing, always in the background and hiding our children due to stigma. There’s more time for playing or I need to be private and stuff, because we’ve seen parents committing suicide. We’ve seen a mother die and leave a nonverbal child and the body discovered 3 days later, we’ve seen going on, I have parent calls and say that they’re about to be evicted. They don’t know what to do. Another one got laid off. They’re already struggling and they’re wondering, what else do they do? From here because you have a sick child, you don’t know where your next income is going to come from and just been laid off, your contract has been terminated. So all these stories need to be given a platform to be voice so that at least government that there are people who need their support and everyone else who’s around you needs to know that there is someone who needs help, and also just being neighbors. If you’ve ever realized that Oh, that child looks like they are different. Then check up on them even if you know you maintain social distance go with the mask but just knock on that door. Because the level of loneliness right now is soaring up top and people don’t know, Yeah. One of the parents So yes, we are the voice on the ground. But then I personally don’t have the capacity to carry someone else’s. But I have my plate right now. So where do they go? You try to do the best you can. But you see the same government that’s supposed to be helping that is still referring this spirit for us to continue working with them. So who the one who is standing for you? When self is my mandate? And so, yeah, that’s that those are some of the challenges, right, like at this point, what needs the government needs to the structures, we can’t rely on the past. We need to readjust the structures that are there now to ensure we get everyone, everyone meaning that inclusion should be totally inclusion. It’s always been about physical disability. It’s about time that the neuron diverse communities also looked into because at this time, we are the ones who are suffering it last
Lizzie: Thank you. Thank you very much Caroline.
Caroline: Um, I don’t know if I can add a lot more to what Sylvia said really. But I think what we need to do for each other is just to be our brothers keepers and check up on people you know might be struggling right now, or going through difficult times because we are going through that. And you know, send a message, quick phone call. If you have something extra you can send to somebody do that. Because we it’s such an uncertain time so uncertain for all of us. Because also kids are not going to school. Some parents are not working. Parents who are running businesses are struggling to make ends meet. employed people have no job security right now. It’s just really difficult for everybody. So, as a nation, we just need to stick together and be more patient with each other be more inclusive, and, you know, share information that will be beneficial for, for example, parents on, you know, taking care of children with disabilities. And just see where you know where opportunities are and just being able to share that information with other people as well on how they can benefit as well. So for now, you know, just taking it a day at time and just hoping for the best and just hoping we get past this in one piece, and we’ll see at the end of the tool, that’s my take.
Lizzie: Thank you so much, ladies. I really enjoyed this conversation.
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