Visible and Hidden disabilities: Nicole Bateman chats with Dani Gibbs

In episode 7 of season 1 of "Conversations with a SEND Mum," host Nicole Bateman engages in a candid conversation with Dani Gibbs, a resilient mother whose daughter is a double amputee with epilepsy. Together, they explore the nuances of hidden and visible disabilities, the challenges of managing epilepsy medications, the impact on parent mental health, and the importance of accessibility for those with physical disabilities.

Episode Highlights:

• Hidden and Visible Disabilities: Dani shares her journey as a mother of a child with both hidden and visible disabilities, shedding light on the complexities of navigating the world. They discuss the importance of raising awareness and understanding about both types of disabilities.
• Managing Epilepsy Medications: The conversation delves into the challenges faced by parents in managing epilepsy medications for their children. Dani offers insights into the daily struggles, concerns, and coping strategies involved in ensuring her daughter's well-being while managing her condition.
• Parent Mental Health: Both Nicole and Dani explore the impact of caring for a child with complex medical needs on parent mental health. They discuss the importance of self-care and seeking support.
• Accessibility for Physical Disabilities: The dialogue extends to the topic of accessibility for individuals with physical disabilities, highlighting the need for greater awareness, inclusivity, and accommodation in society to ensure equal opportunities for all.

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Transcript

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Hello, and welcome to Conversations with a SEND Mum, brought to you by the Supersensory Squad, helping support young people, parents and educators understanding the sensory systems and emotional regulation. In this episode, I am talking to Danielle Gibbs, who is a mum of two, and one of her daughters has epilepsy and is a double amputee. So, Danielle, Welcome to the podcast. Hello. Thank you for having me on. That's all right. So first of all, can you tell us a little bit about you, your family and your story, please? Yeah. So Danielle 31. I nearly said 30 then, I keep saying I'm 30, but I'm 31. Married yeah, two daughters. So I've got a 13 year old. So just entering the teenage years, which is, quite tricky to navigate itself. And then I've got a six year old Freya who, she is a double 3D amputee and she has epilepsy as well. Okay. We live in West Wales, so like nice farmland and in the middle of nowhere, basically. So it could get quite lonely, so it's nice to hop on here and Yeah, thank you. Yeah. And Danielle and I, because my, my son has epilepsy and so it's nice to chat to a fellow epilepsy mum. So we've had a lot of, yeah, you feel like that too which already even before we've, we've recorded this. And so any other mums of kids who have epilepsy hopefully some of the things that we, we will chat about as well will resonate with you. So. So yeah, any kind of common misconceptions that you have encountered, you know, with regards to, you know, amputation, epilepsy, anything in your journey? Probably. So more, because obviously epilepsy is a hidden disability. People, only if people like know for it and know that she's got epilepsy. So I guess naively for me with epilepsy, I just thought like we were saying earlier, it was flashing lights, that sort of thing that, and you would have a seizure and your body would convulse and things like that. But hers is all focal. And. She isn't triggered by flashing lights and things like that. It's completely different. So that was my own personal misconception. So I guess I'm still learning. I mean, we're only a year and a half into her diagnosis and there's like still a minefield of stuff to learn and we still can't pinpoint things that trigger her, I guess misconception for her amputations with the public. Cause obviously that's her visible disability. Thinking that she isn't able to do things, like, when they see I mean it's getting better now because obviously they're people with amputations and wearing prosthetics on telly, and you see the Paralympics and things like that but we still get a lot of People thinking that she wouldn't be able to do something and you can't tell her she can't do something because she will Yes Strong will like you can do it. You just gotta find your own way of doing it like and you'll be able to do it So yeah, I guess that's probably the biggest misconceptions and people saying sorry Like, I, I, I don't like that. That's, that's, that's another like misconception, like, you, you, it's not sorry, you don't need to be sorry, because I'm not sorry, like, she's amazing, so. It's, like, that's one thing I'd like people to take away from this, if they're listening. Like, don't apologize for someone's disability because, like, there's nothing to be sorry about, is there really? No, no, and it's amazing that, you know, she'll just do anything that you, you know, anything that you say, you know, if you don't say she can't do anything because she'll do it, like, love it. Love it. Yeah. She's. She's a bit like me, actually. If you tell her she can't do something, she will want to do it even more. Like, and I mean, she's six, so there's that. She's going through that, oh, what can I push boundaries on sort of thing, and climbing things that she shouldn't be climbing, and jumping off sofas, and Yeah, she's quite a daredevil as well. So, yeah, she's, this girl can, she's crazy. This girl absolutely can. Yeah, and she will. Yeah, exactly. Yes. And she will, that's the thing, she will. Yeah, which is, which is great. So, you know, any, any unique challenges or successes that you want to share with anyone listening? Challenges is sort of like, you'll nourish yourself, like, Every day is a different thing, like, even just like navigating life, like, we were just talking now about like hospital appointments, like, I work full time, trying to hold a job down, like, thankfully I've got such like amazing employers that completely understand but I was at previous employment that they weren't very good with it. And yeah, you'll go for like a month or two with like no hospital appointments and then you get like five in a month or something and you're trying to navigate your life and obviously I've got an older daughter as well. It's getting easier. She's getting older because she can, I don't need to go and pick her up from school. Like she gets the bus home and she's okay to be at home for an hour or two. So just try and navigate life is probably the biggest challenge. Yeah, I. And I, I agree absolutely so many, the hospital appointments, the chasing, I don't know about you, but with, with meds, but for us, there's been multiple times where. The meds haven't been ready, like the meds for epilepsy, like if you don't have them then it's, it's potentially life threatening, they could have way more seizures, you can't just stop the meds like that, you'd have to wean off and even, even just a few months ago, we were told by the pharmacy. That the meds, one of the meds that he's on, so my son is on two meds for his epilepsy. One of the meds he's on was discontinued, apparently. And you can imagine, I was like, what? Like I was crying. I was literally going to meltdown. Yeah. I would I would be like complete meltdown. Yeah. Like. Uncontrollable. Yeah. And I, so I went to a different pharmacy to check cause I was like, no, like they can't just discontinue a medication that is like life, you know, if you just suddenly stop so many seizures, status epilepticus, which is a prolonged seizure, all of those things could happen. So I went into another pharmacy and again, they said the same. Changing manufacturers of meds, even is quite dodgy because even though it's the same base drug, if it's a different brand, it can be made up of different fillers, which could then have different impacts on the child and everything like that. So my head was racing with what are we going to do? We're going to have to wean him off that one and put him on this one. And just, it was, it was an absolute nightmare. So. Being someone who chases and someone who doesn't take no for an answer we, we rang the actual pharmaceutical company of the drug and we were like, is this discontinued? Is this true? They said no, they said it just changed, yeah, they said it just changed its name. So yeah, so it's the same drug formulated in the same way, but a different name change. And for us as a parent having to ring, that's terrible. They should be doing it. Exactly. So, even things like that, that cause undue stress a lot of, a lot of tears. Yeah, I can imagine. And then I had to try and convince the doctors and the pharmacy that the drug wasn't discontinued and that they just needed to now prescribe me this new name of drug, which they didn't believe me. Did they not ring themselves to start to find out? So I suggested that and fortunately one of the hospital doctors then did but the GP wouldn't, the pharmacy wouldn't. No, thankfully, touch words. None of that. I did, we did have it. Because I can't even say the drug, the name of the drug that she's on. It begins with an L, it's like levescapum or something, but basically it's the Keppra. So Keppra brand, but we, she doesn't like the Keppra. She didn't get on with the Keppra. So I always ask for the it's basically the bog standard. Drug of it. It's the same, like you said, same thing, but they're different manufacturers. Yeah. And now when you see a prescription, it's like in big bold letters, like do not do Keppra because the amount of times that I went into the pharmacy, like this is the wrong one. Like, thankfully I've got my mom and dad close and quite often I'll be like, Oh, can you. pick up for a prescription for me because I'll be working or something like that. And mum and dad like, yeah, yeah, it's fine. Obviously don't check it because you, they just think that what's been given's right. And then I'll be coming home and I'll be like that, that's not the right one. Like marching to the pharmacy, like this isn't the right one. I've put on the prescription. So I've had a lot of that, but thankfully nothing has been discontinued because I've. That's a meltdown. Yeah. And I did. And yeah, Kepra. So my son was on Kepra, the first drug that they put him on. And he's on his like fifth drug now to try and stop the seizures. But Kepra, I took him off it. After six weeks, because the rage, the, it was, yeah, it was real. It was so real. And so, but it is advocating as a parent, isn't it? I'm sure, you know, you've got to go down to that pharmacy and say, no, that's the wrong drug, or, you know, I've got to ring the people to say the pharmaceutical company and say, no, what, what's happening. And that takes a lot of energy. A mental headspace, doesn't it? It does. And I guess like a lot of other parents of children with different disabilities and things like that will probably understand. You go from being a parent to then like you have to be like medically trained basically, don't you? When you then have a child with a disability that you like with Freyer's leg condition she was born with, like I knew more than the consultants that we were going to see. Yeah. Because I'd done so much research. And I, like, you become that fountain of knowledge of your child's condition and you do end up knowing more than the medical professionals. It's quite scary because you don't train to be that. Like, I never left school, went to uni and was like, I'm going to be a doctor. I don't know medicine, but you are brought into this world and then you have to, have to learn it. It's, it's scary. Yeah, I totally agree. And I think, you know, with epilepsy, I don't know whether you've, you've seen this, but you know, there's 40 different types of seizures, whereas people just think of one. Is it that many? Yeah. And, but other doctors, GPs, et cetera, aren't specially trained in epilepsy. So. Like you said, we definitely do know more about their specific types of seizures. And I love the campaign from Young Epilepsy. Understand my epilepsy is their hashtag. And it's so true because each person's epilepsy will be different. Each person is an individual and it impacts them in a different way, like any other disabilities as well. We can't just, you know, often things are caught together but actually understanding how seizures impact the individual and also the abnormal brain activity all the time that we, we were just saying that both our kids on, on the EEGs which is where you put wires on heads and you stick glue on them, oh, and that glow. takes years to get out. Yeah. Sensory, absolute nightmare for the kids. My daughter had to be sedated to actually have that test because she's very tactile sensitive, but it's, it's things like that and advocating and learning so much about your child's conditions. Yeah. And I don't know about you, but like Freya had epilepsy. It was, Farrah's got epilepsy here's a prescription for the medicine, goodbye. And it was like, okay, like, what do I do now? Like, thankfully, like, both myself and my husband have, like, got first aid training and things like that. And first, with quite a lot of first aid training now, epilepsy is quite a big part of it because it is becoming, like, more known. So I did know, like, the first aid. what to do like when she was having a seizure and things but didn't actually and I still like a year and a bit down the line I still don't understand it like I'm still having to do my own research to find out, there's no one that, and I mean, we've just been given a nurse now, so yeah, April last year she got diagnosed, so we're well over a year so now I've finally got someone I can like, ring and talk to and ask for advice, but before that there was no one. And you're just sort of like left because there is no one available for you, basically. And yeah, it's terrifying. Yeah, yeah, no, absolutely. And we were saying that it's that being on high alert is very unpredictable, isn't it? When seizures might occur, might not, you know, triggers our general life stress, excitement, all of those things can trigger. And. It's, it's that constant state of high alert, taking its toll as a parent, because you want to protect your child. After all the stuff that Freya's been through, like her amputation surgery, her heart surgery that she had when she was a baby, like multiple hospital administrations, like, epilepsy was the one thing that, like, got me. just flawed me and I didn't cope very well and did have to go to therapy because of the anxiety around it and things like that. Yeah. Yeah. And, and I think it's, it's Saying that's okay. Cause I also, I refer myself to steps to wellbeing because of that anxiety surrounding that, and I'm sure any others listening here, I'm sure many of the send parents listening will, will resonate with that because it's that extramental emotional load. Because we want to provide, we have to advocate for our kids. So we have to, you know, learn all this stuff that we never thought, never thought we would have to. And so therefore looking after ourselves and, and sharing our concerns and our anxieties is really important. Yeah, and, like, never feel bad for thinking, like, that you need help, like, I went on for so long thinking, like, oh, I don't need help, but, like, not, I guess not the stigma around it, because that is changing, thankfully, around, like, mental health and things like that, but there's still a sort of, like, it's your inner voice saying to you, like, oh, you can't cope, you're sort of failing as a mum sort of thing. So just not feeling that, like it's okay to go to therapy and ask for help with them sort of things and finding the right therapist as well that deals with anxiety or people even get like PTSD from Certain things that happen to their kids and things like that. So finding the right person to help you and like, yeah It's okay to go. Yeah. Yeah, definitely. Absolutely. So I mean, you said you shared a few things along the way, but what is something you want to kind of end with encouraging, inspiring other SEND parents on their journey? Oh, there's just so much isn't there? Like, I mean, Freya's only six, so not being, I was very naive before having Freya. very naive that I thought that the world was very accepting and because that's how my brain was, I thought the rest of the world was like that. So I was very naive into the fact that disabled people still, still had a struggle with just normal day life. Like we have a struggle with schools, like getting her into just like mainstream school because. mentally, like she's fine, but her disability is obviously like her physical one is the main one. So getting her. Even, like, when she, when she went to the school, I mean, we live in a very rural community, the school's a very small school, I wanted her to go to that school because her sister went to that school, um, they had to get the council in to put ramps in, to put handles, to put a lift in to the, one of the outside doors, all these things that wasn't there before that she had gone, and without these things she wouldn't be able to go, telling, not just send parents, but everyone, like. just help make the world more accessible for people with disabilities because if you make it accessible for them it's accessible for everyone. And that is the biggest thing, like, you face something every single day that is a challenge when you're out and about, like at shops. Like I used to get annoyed with, like, pushing the pram around to shop, like, now it's with the, if she's using a wheelchair it's even worse, like. Just make the world accessible for everyone. Yeah, and that's, that's an amazing message that everyone needs to hear. Like you said, make the world accessible for everyone. Yeah, don't be naive like I was. And I'm not, I'm not, not ashamed to admit that I was naive because I guess unless you're like pushed into that world, you don't fully understand. But I don't feel like there was enough people talking about it. I feel like there is now. There are a lot more people talking about it now. But when Freya was born, certainly, like, there wasn't. A lot of noise about it. So I think the noisier we are, the better. Just to get it out there. Yeah, definitely. Definitely. Absolutely. We've got it. We've got to, because, you know, there are kids where we're fighting for their rights and you know, accessibility, like you said, you know, for, for Freya and, and, and, and everyone else. So yeah, definitely be noisy. Yeah. Yeah, and don't be afraid to be. Like, don't feel like you can't stand up and say something, because I've been quite outspoken, like, my whole life. Anyway, I've never had that issue, but sometimes I would be a bit reserved about how I was, but now I'm like, no. If it's accessible for Frayer, it's accessible for everyone, it's accessible for everyone with a disability. Like, before Frayer went to that school, they couldn't have even had an adult work in there. They were, had a physical disability because they wouldn't be able to get around because of the stairs and things like that. It's just simple things that we all take for granted. Yeah. Yeah, absolutely. Yeah. Thank you, Danielle. If people want to, no, no, it's good. No, it's, it's very important. It's very important. Absolutely. If people want to connect with you, you know, if, if anything they've said, you've said resonates with them, where, where's the best place to do that? So on my Facebook, I've got Instagram and TikTok, but I don't, I'm not very good on them, but yeah, my Facebook is. I'm always on Facebook. Okay. So yeah, don't ever feel alone. Yeah. Yeah, absolutely. And, and what we've got is, you know, because we're sharing, you know, I'm having the privilege of chatting with mums like Danielle and everything else over these, over the season one. And there's also a Patreon community that is set up for you guys four pound a month where we have. Can gather together and not feel alone. And as well, there's some different resources that are in there to help support different, different aspects throughout, through, from some different guests and things like that. So definitely have a look down in the in the blurb and, and see, see that too. So thank you very much, Danielle, for chatting with me. Thank you. And and I will see. You all in the next episode. Thank you for listening to conversations with a SEND mom brought to you by the super sensory squad. Have a lovely week.