This week, we welcome Lucy and Linda who are both mothers of a young disabled son. They share their experiences of coping with a different life than they had ever anticipated. Lucy and Linda both reflect on the importance of arming yourself with knowledge and gaining support from fellow parents. Our guests warmly offer advice to other parents of disabled children, sharing their valuable sources of information.
This week, we welcome Lucy and Linda who are both mothers of a young disabled son. They share their experiences of coping with a different life than they had ever anticipated. Lucy and Linda both reflect on the importance of arming yourself with knowledge and gaining support from fellow parents. Our guests warmly offer advice to other parents of disabled children, sharing their valuable sources of information.
Welcome to Enhance the UK's Undressing Disability Podcast, where we strip back all things taboo on sex and disability.
Emily Yates:Hello, everybody, and welcome to another Undressing Disability talk. This time around parenting. I have two wonderful people here with me to chat to me today about their experiences. Being mums of disabled children. We have Lucy here with us and Linda as well. Well, thank you so much for joining me. So hi, Lucy, can we start with you? How are you?
Lucy Faulke:I'm good. Thank you. It's been a bit of a manic day. But um, it's Yeah, it's good. It's nice to be sitting down and having just a one on one time with a computer.
Emily Yates:Really good. Linda, thank you so much for joining us. How are you doing?
Linda Ibrahim:I'm good. Thank you. It's lovely to be here actually it's a nice day. So thank you very much for having me.
Emily Yates:So I think the first thing I'm wanting to ask you both is a little bit around your background. Of course, you are both mums to disabled children. And I just wanted to talk to you a bit about that experience, what it initially meant for you as parents, and maybe where you've got to now with it being parents of disabled children. So Linda, shall we start with you.
Linda Ibrahim:Um, I mean, before having my son, Aness who has spina bifida, he's three years old at the moment, and I didn't really have a lot of knowledge about disability. I didn't really know anybody personally, I just knew of people that had disabilities. So it was kind of like a new world for me. So I just got researching, as soon as I found out, I was still pregnant at the time. So I just got researching into it and finding out you know, what's the best way to kind of approach the situation before he arrived. So it's been a really interesting journey. I've learned a lot, and a lot about how society views disability as well. And a lot of things that maybe we could do ourselves to raise awareness and things like that. And I think I was just really ignorant to exactly what people with disabilities go through. So this has definitely taught me, you know, that things aren't as easy as maybe people may think they are.
Emily Yates:Yeah, wow, how how fascinating the fact that having a disabled child yourself kind of even puts a spin on society's perceptions in that bigger picture view. And and what's the situation now? Where are you at now? How do you feel? How did your perception change to now I guess?
Linda Ibrahim:I think now I just focus on kind of creating a path for him where he can navigate and be who he wants to be. And as well as raising awareness on that journey for others who might be going through the same thing. So we're just kind of exploring, to be honest, I mean, we started quite early. So he was in a wheelchair from about eight, nine months, we got one made for him, just because then I didn't want him to miss out on that part of you know, when you're little and you just open in the washing machine door, and you know, just getting around and just getting to know your environment. So now it's just more about kind of figuring out what, what we can what we can do for him and what's out there for other children like him, and you know, how they can kind of have their stamp on on the world, you know, like, their input as well.
Emily Yates:And isn't that so important? Not just kind of how society can be adapted, but how you can make your mark as somebody who's disabled as well. And Lucy, tell me a little bit about your journey and your experience.
Lucy Faulke:Yeah, I mean, I would say like Linda, you just want to make, you know, the world as accessible as possible to your child. And I think for me, it was it was quite different because I I didn't know prenatally about Felix's disability so he has, Felix my son, he's, he's going to be four on Sunday. And he has an autism spectrum disorder. And he also has Down syndrome, but he was also born without an anus, which I didn't even know was something that was even possible. You know, you just like, like Linda says, unless you're, you know, I wasn't aware of the world of disability really, until you're kind of it's thrust upon you. And I think it's made me so much more aware of, you know, what people really have to go through and have to deal with and actually how many more people have a disability. Whether it's hidden or not, then you might realise so for example, so with Felix, he, when he was born, we found out just literally moments after he was born that he had no anus, at which point he was, you know, taken straightaway to intensive care away from me up to London while I was down in Sussex, so I couldn't be with him straightaway, which made it really difficult. And then, thankfully, the next day, we got to see him, but he was in a really bad state. And I think my first kind of thing was, although the kind of Down syndrome, word had been mentioned, I was just more concerned that I didn't want my child to die, I wasn't thinking about any of that kind of other side of things. I just was like, I just want him to be okay. I don't care about anything else. I just want, you know, him to live and be fine. And I think it was quite a long journey, it's actually been about three years on this journey of making sure that that that kind of physical side of things has been safe and okay for him, and that he will be fine. Because I would say, so I'm going to kind of going off on one like. But I just think it's important just to kind of say that, for me, it's been really, really up and down, because his physical disability has completely overtaken anything else, just because he has had so much surgery, I think, and he's had a colostomy bag, for quite a lot of that time. He then sort of had a reversal, and then got sepsis and almost died and then had to have another one. So it's kind of been almost two things that we've kind of had to, I guess adapt to. So obviously, the physical disability and the Downs syndrome, but then obviously, he was also diagnosed with autism. So it's kind of been, like a bit of a baptism of fire. I think, from going from a world where you, like Linda said, You know, I, I didn't really have any one that I really knew that was disabled, or that I knew that, you know, perhaps I had a couple of friends that were on the spectrum with autism, but not physically disabled, or anything that you would really kind of, you know, think, Oh, I know about that. And so I think for me, it was just like, Oh, my God, I feel really, really overwhelmed. And I just want to do the best for my son. And I really need to be informed. So for me, it's been about a journey about making sure that I'm informed myself and that I can do the best that I can for him. And, yeah, just kind of, yeah, just care, care for him the best I can and give him the best opportunities that I can really,
Emily Yates:Yeah, and I think you've made such a good point about that kind of information and education. So I've got, I've got cerebral palsy, I'm a wheelchair user. And one of the things that my Mum has always said to me, I was born 10 weeks early, and the doctors immediately kind of said, Oh, she'll, she'll never be able to walk and never be able to do this, she'll never be able to do that. And it was almost like, my Mum said, Well, we got this information, and we didn't have any other information to go from so thats the information you believe is is right. And that, yeah, it's so difficult, isn't it when you don't have that previous experience or knowledge or even anyone to turn to, to get that knowledge.
Lucy Faulke:I think that's the thing and as a new parent, and that's something that I really, really struggled with, because we were also told Felix probably would never walk, we were told that he would probably never be continent. And he walks and he, we're just almost I'd say 80% there with toilet training unbelievably. So you know, I think it's also about, yes, you need to be informed by people in the know, like doctors and things. And you need to take that advice, because they obviously they do know what they're talking about. But at the same time, you need to be able to, to do that kind of research yourself. And also not just kind of take what people say at face value. Because I think if people say no, that's not going to happen, you need to be able to kind of think actually, I can make that happen, or I'm going to try and do the best I can to see if I can change that. You know, because you want the best for them.
Emily Yates:Absolutely. Absolutely. And I guess going on from that and maybe other parents might be watching or listening to this who of course also want the best for their disabled children. I think my next question was around, do you have any hints, tips hacks over your, you know, three, four years of being in this situation and having this experience that you think Yeah, that that might really help or the parents of disabled children that that really changed things up for me, that really eased a certain experience for me. Linda, can we start with you again?
Linda Ibrahim:I completely agree with everything you said, the way Lucy, I really relate to everything you just said. And I think for me, I, I felt more comfortable the more I spoke to other parents who are going through maybe similar things, but maybe just a few steps ahead of me. And their children might be, you know, three, four years older than Aness. So that really helped. Because I could kind of see I know, every child is different, but you would, you could get an idea of what's coming up, so you could prepare more. So for me, I'd say reaching out to communities with, you know, parents going through similar things, definitely something helpful. I mean, now we have the internet, even Instagram itself. And there's such a big community there now, and people putting up stories of, you know, hacks and equipment that's working for them. That's been so helpful. And I've gotten so many tips from just, you know, from tables to small little things you can add to your wheelchair for a child to make life easy. So that's really helped. Another thing would be not to overwhelm yourself and not to feel bad, and you know, Mum, Mummy guilt and things like that. And, yeah, that is, I mean, even if your child doesn't have a disability, and you're a Mum, it is something that you think about. So I would say, take it easy on yourself. Erm, and don't expect, you know, to be Superwoman all the time, it's okay to kind of take a day off two, three, whatever, how many you need, as long as your child is happy, and you're still working towards, you know, make creating a future for them where they are, you know, maybe flourishing in their own way, then that's the most important thing. So that's, that's, that's what's helped me-mindset really. I've had to change my mindset a lot. And kind of my expectations needed to change a little bit so that I'm not overwhelmed too much, really. So yeah, I would say that's the biggest thing for me, those those two things.
Emily Yates:Yeah. Wow, such words of wisdom. Thank you, Linda. And I think you're absolutely right, you know, whether whether your child is disabled or not, I think there's a lot to take from that for any parent. So thank you. That's really great. And Lucy, how about you?
Lucy Faulke:Yeah, I would say definitely would agree with what Linda was saying, in terms of support, I think it's so important, you know, I found that with Felix, having, something I did find quite difficult was because having, you know, his no anus to begin with. And that was was something that's so rare. So it's quite difficult to find another parent who's been going through that. And, and I think something that I struggled with a lot was we had really bad problems with keeping his colostomy bags stuck on. So from a young age and obviously having, he had this really sort of erm he had sort of the surgery to create his stoma but they've made it so the the loop stem was quite far apart. So we ended up having to have adult bags instead of children's bags, they had this huge bag on this, you know, he was only four pounds 11 at birth, he was tiny. You know, it was absolutely ridiculous. And I think, you know, trying to find people that have been through a similar thing was quite challenging. But you kind of, you end up finding other sort of slots so for example, you might find parents that have got a child with a colostomy because of another reason you know, and you will try and try and find sort of ways and means within that so for example, we found with the bag you know, if you use a hairdryer to heat it up first and you know, that really helps obviously not too hot otherwise that's not good. And you know, you find sort of things like even just putting it in your bra if you haven't got a hairdryer to warm up the kind of the pliable adhesive just to help stick it. You know, things like for example, we just struggled so much even with those. We asked so many different kind of parents online, and we found this amazing stuff actually, from some amazing stoma nurses at King's called Coloplast protective sheet which for anyone that's got a colostomy bag. If you're finding it hard to stick to a child, it's incredible. You can put it on open wounds you can do anything because of course when you've just had you know he's just had surgery you need to kind of make sure it is clean. So yeah, you just that stuff is amazing. I think there's so many tips and tricks around colostomy bags, I could talk to you for like hours about you know how to deal with that, especially in things like public toilets and stuff with a baby who's screaming erm but I'm not gonna, I think I will just literally talk for about 15 minutes if I do that, but I think yes, well, as Linda was saying, you know, you've just got to kind of let yourself off the hook a little bit as well, because I think, because you desperately want your child to be happy, and you want them to be healthy, and you want them to thrive, if they're doing things like for example, with Felix to begin with, it was, he was crying a lot because his skin was sore. And obviously, he was having pain with his stomach, because of all the surgery he had. You know, you feel like it's solely your responsibility that he is feeling rubbish. And I think you've got to try and take a step back and think, actually, you know, it's not your fault, this has happened, and you're doing the best you can and try and take it easy on yourself. I think, later on, since he's had the surgery, we have really bad problems with his autism, in terms of feeding, so he won't eat, he just doesn't eat anything. And I feel bad, you know, for trying to feed him rubbish that he does eat. So for example, occasionally he might, he likes ice cream. But the only thing he eats,
Emily Yates:Me to, I like ice cream!
Lucy Faulke:So you know, and I think to myself, Oh my god, you know, I'm just feeding him crap. But if he eats, that's all that really matters for stop him from having a feeding tube. You know, we make him smoothies and things to try and get things into him that he will kind of eat. But I think you've just got to kind of, like Linda said, take it a bit easier on yourself. Because at the end of the day, you're just going to go crazy. And it's you're not going to be in a good place for your child, either, if you're beating yourself up constantly about the choices that you're making to try and keep them alive, basically. And, you know, I think I mean, I could say loads of hacks about autism, the specific things, but I think, yeah, I just think it's just really important to surround yourself with people with knowledge, because at the end of the day, knowledge is power. And that kind of, you know, helps with everything really.
Emily Yates:Great, and people that are supportive of your situation, and..
Lucy Faulke:Definitely.
Emily Yates:They're best to understand it.
Lucy Faulke:Yeah, definitely, I think I think for sure, I mean, I know that. Um, so I, I actually joined a group with, for Down syndrome, parents of Down syndrome. And, and I, at first I was kind of a bit unsure of kind of how I would feel about it. And just I think, because I'd feel a bit overwhelmed and having come from kind of not really knowing much about the world of disability, I didn't want to kind of just, you know, bombard myself with everything and just be feel overwhelmed, but actually it was the best thing I'd ever done. And I think, yes, those children don't have autism as well, the ones that I kind of have met. So it is different, but, you know, it's still, you can kind of have a bit of a moan sometimes in terms of and I know that sounds awful, but not because he's, not because he's disabled. But because you find it sometimes difficult, if someone for example, you're dropping I don't know Felix off at nursery or something, and you're finding that a parent complains to you about the fact that her child's not saying fire engine properly, and you're thinking he doesn't talk at all, he's got no speech whatsoever. And, you know, I think you need to be able to kind of have a chat with other parents who are going through a similar thing, so that you're not feeling like you'll miss.. It sounds awful saying missing out because I love Felix more than anything, but it's hard when you don't hear like Mumma or Mummy like, you know, other children are talking in sentences and telling their parents about the day they've had, and you know, you don't get any of that. So I think it's good to have that support group.
Emily Yates:Ah that's great. Thank you so much, Lucy. And I guess my next question was a little bit of a personal one. I thought I'd be a little bit cheeky and just talk about my personal experience and, and what I'm kind of hoping for and seeing if you could give me a little bit of advice regarding that. So as a wheelchair user, I'm 28, nearly 29 now and, you know, I'm in no desperate rush at all, but at some point, I might quite like to have a child become a parent, become a Mum. And I just wondered if you had any advice regarding that for me.
Lucy Faulke:I think, just like I was saying the best thing you can possibly do is be informed so that you can make the best decision for yourself. I think that's the most important thing. You know, I think, like I get like I said before, you know, information is power. And I think that as long as you feel prepared, then you're going to be happy to kind of make that step. I think.
Emily Yates:Yeah, preparation is key.
Lucy Faulke:Yes, perfect. Exactly. Yeah, preparation is key.
Emily Yates:And people always say that there's never any kind of perfect time to have
Lucy Faulke:Oh, no, there's definitely not. That's true. Massively.
Linda Ibrahim:Yeah, there isn't, I definitely dont think there's a perfect time. I think every time comes with its own challenges and you know, and so it's just when you feel that, you know, this is something that you want, maybe, then that's the best time for it.
Lucy Faulke:I think that's totally right. I mean, I think with children, it's just kind of if you feel that you, that's something you really want in your life and you feel ready, then I think you kind of can't just keep waiting for the perfect time, because there is never a perfect time, you know. My partner and I laugh, because, you know, I got pregnant with Felix, when I had just given up my job for a lot of different reasons. But I just, I just left my job and we thought we were fine living in London on my partner's salary, and then he suddenly lost his job when I was eight months pregnant. So, you know, that's definitely not the perfect time to have a child, but it worked. And we're fine. And so I think it goes to show that, you know, it's, I think, yeah, you just know, within yourself that you want children and that you feel ready. I think that's enough.
Emily Yates:And I guess last question, for me, I think the one thing that I'd like to ask you is, would you be willing to be a part of our Undressing Disability Hub? And for people to contact you, should they have any questions? Should there be parents of disabled children? Where is best for them to possibly contact you? And just ask for a bit of advice, you know, start creating that community that we've we've all just said is so important.
Lucy Faulke:Yeah, absolutely. I mean, if there are any parents out there with children that have had an imperforate anus, which is what Felix had, which I know I struggled to find other parents that had gone through that then, you know, or autism or Down syndrome, then yeah, of course, can contact me with at my email if you if you wanted to, which is Lucy Faulke, which is, lucyfaulke@gmail.com.
Emily Yates:Thank you. And Linda, how would you feel about people contacting you?
Linda Ibrahim:Yeah, I'm open for anything, any questions or anything at all. And you can email me on lindaibrahim9@gmail.com. And I've got an Instagram page where I kind of, it's more of Aness's, my son's, journey, but not just him, but how it affects everybody and different angles. So that's at worldofaness. And so if you can, if you go on there, you'll see different things as well about us and our journey. And you know, what, what he's up to, and just everyday things, really, so any questions can go to there or my email.
Emily Yates:That's so brilliant, thank you. And I think Instagram pages like that just really help with normalising the whole thing as well, don't they. If people are able to watch along and, and just see how families manage and not only manage, but truly enjoy every aspect of life just as any other family, I think that is so so valuable. So I will, I will definitely be following. And if at any point, there are any other kind of hints, tips, hacks that you could recommend, we do always really recommend on our Undressing Disability Hub, that any kind of discussion that could be started can be really really useful as well to get people talking and sharing ideas and bits of information. So thank you so so much, both of you. That's been so eye opening and wishing Felix a very happy birthday. Wishing Aness a great time continuing with Instagram fame. Yeah, thank you so much both. Enjoy your weekends.
Linda Ibrahim:Thanks so much.
Emily Yates:Thanks for listening. For more information or to have a chat with us, please visit Enhancetheuk.org. From there you can also sign up to our Undressing Disability Hub, a platform for professionals to connect and collaborate in the arena of sex and disability.