Podcast: Parenting with a disability

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Transcript

Jessica: You're going through a process that so many people go through, and yet you feel like in some ways you shouldn't, or society says hmm are you sure you’re allowed children?

I remember telling one of my support workers that I was pregnant, and her reaction was, she was kind of joking, but at the same time, she was like “what you’ve had sex?”

And I was like, well, yes, that's generally how babies happen.  And I just thought at the time, is this going to be the reaction that I get from everybody that I tell that I'm pregnant?

Peter: Hello and welcome to the disability download. Brought to you by Pan Disability charity Leonard Cheshire. I'm Peter Williams, and on this podcast we respond to current topics, share stories and open up the discussion about disability. Today we have a special conversation lined up as our host, Beth engages with Jessica, a disabled parent, raising two children.

Throughout the episode, Beth and Jessica delve into Jessica's journey through pregnancy and beyond, offering invaluable insight into the experiences of disabled parents.

Together they navigate to societal stigmas that often confront disabled parents and chat about support systems in place, including the role of medical professionals.

Get ready for an enlightening discussion that sheds light on the challenges and triumphs of disabled parents, like Jessica.

Beth: Hi, Jessica. Thank you so much for coming on the disability download. The first question we'll start off with is a bit about yourself. So, can you tell us about your disability and your journey as a parent with a disability?

Jessica: My name is Jessica and I have cerebral palsy. With my type of cerebral palsy, if you were to like literally split me in half down the middle, my right side would be weaker than my left side. I don't know what the official medical diagnosis for that is. But there are different types of cerebral palsy, and that's the type that I have.

But my arms and feet are all affected. I also have epilepsy. I was diagnosed when I was 31, which is quite late for an epilepsy diagnosis. I have chronic pain as a result of foot injury, and I have recently been diagnosed with fibromyalgia, which has probably stemmed from that foot injury.

So I have what I like to call the disability trifecta in terms of cerebral palsy, epilepsy and fibro, because if I don't laugh about it, I’ll cry about it. 

Some days I'm like, I don't just don't want to function today. I live in Wales and I have a husband and two children. My eldest is nearly 15 and my youngest is nearly six. My son, technically speaking, is my stepson because my husband had a child from previous relationship. But he lives with us, so I've always like referred to him, particularly since that relationship got serious, as my son.

I don't treat him any differently just because I don't share his DNA and they're close, they're really close to siblings, even though there is quite an age gap because for a long, time with my husband I was like we've got Oliver. We don't need to have another child because I wasn't really sure if I wanted to go down that route.

I knew I wanted children, but I wasn't sure if I wanted to go through pregnancy because I wasn't sure how my body would cope with it. And then we got to the point where we just thought, if we don't try, we won't know because no medical professional could tell you. Ohh, this is going to happen or this is going to happen.

Because if you ask the question relating to medical conditions and pregnancy quite often they just shrug their shoulders and go well, I don't know the answer. I'm not a specialist and yet there isn't really a specialist in that field, you know? So, for a long time we had life circumstances, like I kept being made redundant or losing my job or something would happen like I was diagnosed with epilepsy at 31 and I was like, is this a sign not to have a child?  Epilepsy and pregnancy, how's that going to work?

And then we just, we just thought, well, we'll see what happens and a couple of months later, there was a positive pregnancy test.

Beth: How did you find your pregnancy then. So, you spoke about, obviously, when you asked medical professionals, they don't have the answer. How was it with your disabilities?

Jessica: It was an experience. I think one of the main things I found is that in the NICE guidelines, the National Institute for Health and Care Excellence, I think is, is the full name.

You are entitled to give your birth plan. You know how you want to give birth. And I knew from a very young age that if I was going to have children, I would need to have a caesarean section because when I stand, I sort of lean forward because my pelvis is not straight.

So my pelvis would not cope with going into labour, it just would be really painful.

And, we'll probably end up with it being an emergency C-section. So, let's plan it instead, and then we know where we're going and there's no surprises. But I kind of had to argue that quite a lot, even though you're supposed to be able to say this is what I want and it resulted in me getting on like an examination table in front of the consultant lying down and going, I cannot open my legs this wide. I cannot do this. I cannot do that. It isn't going to work. And once she had the physical demonstration in front of her, she was like. Yes, I see what's going on here now.

But it was a bit like why am I having to explain myself quite this much? You know, it's what you can see in my notes like my notes are almost like, you know, heaps of notes, not a few pages. And yet I was having to kind of break things down into sort of baby terms for people who are meant to know more about my condition than I do. 

So that was a good one and we did eventually we got everything sorted for the C-section and I saw her and it's just beforehand because I said please not be out completely because I don't want to be awake for any of it. I've had too many experiences of surgery as a child that has left me, I don’t want to say traumatised, but certainly not particularly liking hospitals. So I was just like I want to go to sleep or I want to wake up but I want there to be a baby. I don't want to know anything else that's going on in between and my only request was as soon as my daughter was able she was given skin to skin with my husband.

Because I obviously wasn’t going to be awake straight away, but they actually placed her on me when I was asleep, so I had first contact with it and then she went to my husband straight away. So that was really cool. And they made it that I could stay in hospital for a few days afterwards to recover. And my husband stayed. They gave him, like, a camping bed type thing next to me so that he could help with everything over the few days. And I wasn't having to buzz for healthcare assistance all the time.

It was just really nice because it was just us in a little bubble getting used to this new scenario. I guess you know, there was suddenly this little human being that was relying on me for everything.

And I'd done a lot of it with my stepson. My stepson was a year old when I met him. So like, I’d obviously done nappies and feeding and bottles, but I'd not done that first. This tiny human is absolutely reliant on me for everything. And so it was. And it was also really nice- I wouldn't have minded having a son but, it was really nice that we had a little girl because it was completely different for both of us.

Beth: So, what are some of the unique challenges you face as a parent with a disability, both practically and emotionally?

Jessica: In the pregnancy stages, one of the major obstacles we had is that in the maternity unit where they saw you for scans and stuff like that. Every time you went for a scam you had to get weighed. And I can't stand on a weighing scale. So eventually after trying to do like let's stand on the scales and see what weight we get and almost guess. 

I discovered that there was a sit down tales in the Physio Department. So I would go to the physio department on my way to my maternity appointment weigh myself, get the physio to write down what the weight said and then bring that to the maternity department and they write it in my notes. The other scenario we had is that there was no disabled toilet in the maternity unit, so one time they asked me for a urine sample because they needed to check ketones and sugar. 

My mum took her 33 year old daughter into a standard sized, you know, toilet cubicle and is basically trying to hold me up, hold the bottle that you pee in to and it should have been like filmed for some kind of comedy sketch because it was just absolutely hilarious and we come out like kind of sweating buckets and stressed. And then one of the nurses goes, oh, there's a bigger cubical around the corner there. And I'm just like, well, that would have been really nice to know 10 minutes ago. It's like maternity units aren’t prepared for disabled parents.

Beth: I was going to ask you that. I was going to say, because obviously a couple of things you've mentioned, what is accessibility like in maternity areas? Is it just non-existent? Is it, is it almost like they just don't expect people with disabilities to be having children?

Jessica: It feels a bit like that. I mean, like for wheelchair access everything was fine and doorways were always the appropriate widths and stuff like that. So, for me, getting around in terms of the room was that was fine, but just like I remember reading a newspaper article at the time and it said prepared to be a novelty. It was like top 10 tips on how to cope being a disabled parent or something like that and it was basically prepare to be a novelty, that was one of the things that really stuck out and I was like, that sums up how I felt through a lot of this experience because so many of the nurses and doctors had never encountered a scenario like mine.

And then ironically, somewhere through my pregnancy I found out that one of my best friends, who is also disabled, was pregnant too, because I saw her at a maternity appointment and I was like Yay, 2 for one. I mean, I look back on it with great fondness because it was a great experience, but it was also a massive learning curve in terms of how much needs to change. You're going through a process that so many people go through and yeah, you feel like in some ways you shouldn't or society says hmm are you sure you’re allowed children?

I remember telling one of my support workers that I was pregnant and her reaction was she was kind of joking, but at the same time, she was like, what you've had sex? and I was like, well, yes, that's generally how babies happen. And I just thought this time, is this going to be the reaction that I get from everybody that I tell that I'm pregnant? If I say to a friend?

Oh, I'm pregnant. Is she going to be like Oh OK, or look at the floor or you know how is the news going to be received? And it shouldn't be about that. It should be about this miracle is happening because it is. It is a miracle, you know, to be to be pregnant and to give birth to a child.

Beth: We've touched a little bit on people's reactions. How do you deal with societal stigmas or misconceptions about parenting with a disability, have you faced any challenges or any reactions off people even that you don't know?

Jessica: To be honest, I don't pay them any attention. And I don't think I face that many or if I have, people haven't been brave enough to say it to my face. I'm quite on subjects related to disability, I will not mince my words. So, if someone will say something like oh, you can't be a parent, I will be like, excuse me. And I will fire back. Why exactly or whatever, you know? So I don't really think I've encountered much, but like I've mentioned that article earlier. About, you know 10 things to be aware of if you're disabled and want to become a parent.

And I just laughed at it because I found it funny. But if you haven't got confidence that I've got and self esteem that I had and self belief that I had and that I was gonna be OK as a parent, it would shatter you because there's so much around you that says you cannot do this when there's no reason that you can't, you know.

I was really lucky. I had a social worker who was absolutely fantastic. She was like, what can we do to help you through this process? But lots of people are scared of social services involvement and I can see why. You know, we've all heard horror stories about things that have gone wrong. But my social worker was magic and was basically worth her weight in gold because she was like, right we want to make this work for you.

This is about you and you are having a baby. And if there was ever anything of how you're going manage this with your daughter, I was like in the same way as I managed it with the son that you've ignored for the last nine years. Because they were quite happy to let me co-parent my husband's child, you know. So I was like, you've never asked any questions of how I managed with Oliver. So you can't really ask anything of how I’m going to manage with this one either because you've just let me get on with it and he's alright. He gets up in the morning and he's perfectly fed and watered and you know he's living his best life. So you know, I just get on with it. I live my life. You know, I'm very lucky. I've got this supportive family and my parents are amazing. And they're only down the road.

My brother is only down the road. My grandmother is not far away either, and my mother-in-law is literally a 15 minute drive away. There are other family members further afield. My eldest brother lives in Australia and I have to say that him and my sister-in-law sourced me some zip baby grows or zip suits rather than buttons, which I've not seen in this country, six or seven years ago and I was like, these are the best invention ever. 

Can you bring over some more when you come and meet your niece and they just, like, bought every pattern that they could find because I could actually do the zips much easier than I could, the buttons because the buttons would just get on my nerves and my fingers would get all kind of tangled up and I was just like: I just want to dress the child. So yeah, things like that are amazing. I also found something called a lap baby, which I think is designed for having you're child on your lap child during a flight more than what I used it for, but I used it as she got bigger. She was on my lap and my electric wheelchair, or power wheelchair, so she could face me or face away from me.

I could do it either way. So she was in a sling, but she was extra supported. And it just meant that I could have that. Not quite a skin to skin, because obviously skin to skin you you're not clothed, but that closeness with her.

Beth: Would you say you've encountered any specific barriers or obstacles in accessing support services or resources as a parent with a disability?

Jessica: I think it's just difficult, not just as a parent with a disability, but as a person with a disability. Generally, you know, as a woman with a disability accessing smear tests, this is hard work. I'm lucky I can transfer onto the bed and I can be poked and prodded. But I know a lot of women who cannot do that so cannot have a smear test. And yet I had to wait 12 weeks after my daughter was born to have a smear test and they found the cells that that could be precancerous. So I had to have extra treatment.

My smear was late because I was pregnant when it was due. And I just dread to think if I'd left it any later, what would have happened, you know? So I'm there with a newborn baby having a smear test, finding like, cells that needed treatment. And I could have that treatment. But I thought afterwards, you know, if you can't be examined in the way that they choose to examine you, how do you do it?

And the answer is you don't. So you could be walking around with additional problems and not know it, and when I realised that, it was quite terrifying. Yeah that threw me completely because as a new mum, you’re more vulnerable anyway. And you do think about what happens if I'm not here.

Getting a life insurance policy is really difficult when you've got pre-existing conditions. I can't have one.At the moment as far as I'm aware, I can't have one because I can't find one that will cover me for all the lovely things that that exist in my life. You realise when you become a parent that it's not just about you anymore. You do start asking yourself some quite scary questions of, you know, what happens when I'm not here? What happens if something happens to me? And my kids are left.

You know, my husband has life insurance, but I tried to do the same at the same time and couldn't do it. And yet I was seeing all over social media various, I don't know how I was seeing it so much, but I was seeing like adverts for “Are you this old and a parent?  You need a life insurance policy.” And it was like, can you shove it in my face anymore?

Beth: So disabled people often want to be as independent as possible, whilst recognising that they need assistance and that's OK. How do you balance these two things in your parenting journey?

Jessica: I think you have to kind of tell yourself very early on in the process that it's OK to ask for help. And you have to realise that you can't do everything. You literally cannot do every single feed when you've had like 5 minutes sleep. You are not superhuman because nobody is, you know, and my husband and I shared as much as we could. He would leave me the tasks that he knew I could do and he would step in when I needed more support. 

You know, I was trying do nappy changes as much as possible, but there would be times where I think I have everything under control. And then it really wasn't, you know, and I'd need extra help. There'd be times where I think, yeah, I can get this baby grow on and she’s start wriggling and smacking me one and kids limbs don’t stay in one place. And I'd be like like, can somebody help me here? 

Because I'm never gonna get this on otherwise, and we're never gonna leave on time, you know. But I was as involved as I could be in every process that I could be because I wanted to be. And yeah, it's just about trying not to feel guilty either. Now that's easier said than done. Because there would be days where I would be like, I really can't do this today and I still have odd days like that now where I'm like, I'm exhausted Amelia, can you come and read to mummy?  And try and still be around but more relaxed than full on. And she’s really good at perceiving that today is a good day, today's a not so good day as well, and she will also quite happily go and just entertain herself for hours. 

I'm not saying I would leave her in the house unattended by any means, but she doesn't need constant attention as long as she knows someone's there if she needs them, she can go off and do whatever she wants to do and then she can come and find you when she needs something she doesn't need you to be constantly sat there knowing and like constantly in view. You know you can step out of the room and she'll come and get you. Yeah, she is very independent in that sense as well, and that's totally me. I guess I think it is my husband too, but she's quite happy not to be bothered as long as she's got what she wants and she'll tell you quite happily what she wants to have at that time. If she wants this toy or that toy, or the telly on, or whatever it might be, or this pile of books, as long as it's the hand. She's more than content.

Beth: What are some of the positive changes you'd like to see in societies, attitudes and support systems for parents with disabilities?

Jessica: I mentioned earlier that when I was going from maternity appointments, there was no scales that could be sat on in maternity.

Once you've got a piece of equipment that is inclusive, like sit on scales, anyone can use it. So, if there's a mum, a disabled mum who's absolutely shattered, she can sit on scales she wants to. She doesn't have to stand. You know what I mean?

So that would be the first bit of equipment, I would say every maternity ward in the country should have and also, disabled toilet.

Because if you want someone to give you urine samples and things, the extra space is really handy when you're trying to pee into a tiny bottle, I know I’m being really kind of, you know, graphic in that in that sort of detail. But you know you got to kind of bend and contort yourself into these big positions to do these things and having that space to be able to maneuver, especially if you've got like a wheelchair that you need to transfer from or a walking frame, that you use or crutches or wherever it might be. Or God forbid you might already have one child that you need to take in with you.

You know, so that you can supervise that child while you're pregnant with the next one. There was no kind of allowance for that to happen either in that you might need to supervise child number one or child number 2 in other way or child three or four or whatever, you know.

It was just like this alien concept. But I was quite happy to smash the alien concept and be like, well, I'm here. So you got to deal with it because you know, because I’m living it. One  experience we had with the midwife was when I went to a midwife appointment, she said. So are you going to hire a nanny to help you look after the baby? And I looked at my husband and he could see the steam coming out of my ears. He was like, she's got a family and she's quite capable. And the midwife just kind of looked at the floor and I was like, I have no answer for you right now. I cannot. Can we just do what we need to do and I can leave? Yes, I'm disabled. But I can be a mum.

By contrast, the GP who I saw when I first found I was pregnant, because I was really worried about my medication I made a really quick appointment. He confirmed I was pregnant. Did all the due date and all like figuring all that out and was like congratulations. Off you go. Here's your maternity pack. Nothing special in inverted commas about the appointment. I was treated in the way that you would treat any woman who just found out she was expecting. I was asked are you happy to be pregnant because they have to ask that question. It was like do you want to continue your pregnancy? I was like, well, yes, you know, everything's fine.

I just want to know that the medication I'm taking isn't going to interfere and everything was fine other than I couldn't breast feed. That was the only obstacle and I didn't want change medication while pregnant because I didn't want be going through any additional hormonal changes when your hormones are already all over the place but you know, yeah, I think, yeah. Being asked if I was going to hire a nanny is definitely up there with the experiences I will never forget.

Beth: It's just a really unhealthy assumption, isn't it? And I just think you know...

Jessica: Yes and I think that's the message I would give professionals. Just don't assume. Yes, you know I am quite happy if someone asks me a question like if someone says what is your disability like you've done today. Tell me about your disability. I will answer.

If someone says what's wrong with you, I'll go ballistic. I'll be like, oh, well, actually, my cup of tea is cold or I'll give them some really, like, trivial answer and then go. What's the matter with you? You know? And they're like, no, that's not what I mean. I mean, I mean, and then start awkwardly, like pointing at things. And I'm like, so you want know about my disability? You know, I’m filling in the gap, but yeah, some professional attitudes have been astonishing. 

And then like you say, the anaesthetist and a couple of the other midwives were absolutely fabulous. You know. There was nothing that they were doing that was too much for them to do. And there was one healthcare assistant who I needed to help me shower as I hadn't showered for several days which sounds terrible, I'd obviously cleaned myself, but I just couldn't have a full shower and they wanted to discharge me, but before they could send me home they wanted to make sure I was OK and my husband was like, is there anybody that can help my wife have a shower? 

And I had, like, tape across my C sections scar, so they had to remove that because if I go and have a shower, there's no one to watch the baby and we’d have to incubate her. And we know she's pretty safe but we don’t want do that. So this lovely health care assistant just like came and helped me, and she was like “this is amazing and I'm getting to watch someone's hair. And normally I'm doing this other weird jobs.” So she was doing something different for the normal, but she was really happy to give me a hand, you know, it's just the individual and sometimes you just want to say to people just think outside the box a little bit and, you know, just think how, how would I like to be treated if I was in that boat or that situation and how can I emulate that to help somebody, you know.

I follow a lot of disabled people on social media and there's a few I follow who are parents or just became parents and they asked some questions and I answered them and said well in my experience, and this is very much my experience, this is what I found and it might help you it might not. You know, especially like, I can think of one person who is visually impaired or blind. I haven't dug deep enough to know how severe the impairment is. Their experiences are not going to be the same as mine. You know its not one size fits all.

Beth: It's very unique, isn't it? Because everybody in the world, you know, whether you've got a disability or not or not. We're all so unique. We have different experiences. We've grown up completely different. So I guess people just need to factor that in. All of us are different. We have different ways of doing things and we need different types of support. Not one-size-fits-all, it's very unique. Do you have any advice that you could offer to people with disabilities who might be thinking about having children or who might think ohh, you know, society says this is not for me. It's not for me. What advice would you give them?

Jessica: I’d tell them to tell society to buggeroff firstly. I’d tell them to just go for it.

Obviously be aware of your needs and your... I hate to say limitations, but you know, how you can do things or not do things and do some research. I'm quite happy you know if somebody wants to message me on social media and say how did you do this as a mum?

I'd answer the question because sharing our knowledge and sharing our experiences is how we get the society to move forward and show society that you might think this is a taboo, but actually this is our lives we're talking about here, you know. And just because you think in your small mind that a disabled person cannot be a parent doesn't mean that that is actually the case. Obviously there will be disabled people like they will be non disabled people who will choose that they do not want to have children. 

Yeah, and they will be the disabled people who, for whatever medical reason, cannot have children in the same way as they will be non disabled people who cannot have children. But if you want it and you are physically and biologically able to do it, even if you need a little bit of assistance, just do it. My children give me a reason to get up in the morning. I don't mean that in a in a really horrible way. I would get up in the morning anyway, but they give me a reason to brighten my day. Yeah, they  give me a purpose. As far as I'm concerned. And I don't really know what life was like before they were around.

I know it happened. I know there were things I did. I went to university, I got a degree. I had different jobs before they came along. But your world changes when there's smaller people to think about that you're responsible for, and I wouldn't swap any of this for the world. And I think it's brought my husband and I closer together as well because it's solidified who we are as a couple and as a team. And we have had our challenges. We've had our obstacles and we just dealt with them as they've come along and gone bash, out of the way. I genuinely would not change it for the world.

Beth: I love that. It's such a gift as well isn't it, being able to give that life, it’s just amazing.

Jessica: It’s a blessing. It really is a blessing. And I think I said earlier, there is no feeling like hearing your baby's heartbeat and feeling those kicks.

That's the only difference between my two children is that I didn't get to hear my son at that early stage in his existence. But that is the only difference between my love for the two of them.

Beth: Thanks so much Jessica, you've provided loads of golden Nuggets of information and yeah, I just want to say thank you so much for coming on the disability download.

Jessica: No, I really appreciate you giving me the chance to share my experiences and I'm quite happy if anybody is listening to this and wants to connect. I'm quite happy for them to contact you and you put me in touch or just search me on, you know, the usual social and I'll probably crop up somewhere. But yeah, I hope if I've helped one person by them listening to this then I'll be really happy because you know we need more people to realise their potential as parents and not be scared.

Beth: Amazing. Thank you so much.

Jessica: No, genuinely, thank you.

Peter: Thanks to Beth and Jessica, who are thought provoking discussion. We always love to hear from our listeners. So do get in contact by emailing us at disabilitydownload@leonardcheshire.org or contacting us on Twitter or Instagram at Leonard Cheshire.

If there's a topic or a guest you'd like to hear on our podcast, do reach out and let us know.

And don't forget to like share and subscribe to the podcast until next time everyone. I'm Peter and this has been the disability download.