Sarah's story - wheelchair use and other journeys

My guest this week, Sarah Perry, is an author, lecturer and mum to two-year-old Zangi. She overcame a challenging birth, an extended hospital stay and inverted nipples, to meet her breastfeeding goals and continues to feed to this day. Sarah is also a wheelchair user and in this episode she shares some of her powerful writing about her experience of motherhood.

We talk about breastfeeding with limited mobility, feeding positions in a wheelchair and other people’s reactions to mothers with disabilities.

You can follow Sarah on Instagram at @__Sarah_Perry

My latest book, ‘Supporting the Transition from Breastfeeding: a Guide to Weaning for Professionals, Supporters and Parents’, is out now.

You can get 10% off the book at the Jessica Kingsley press website, that's uk.jkp.com using the code MMPE10 at checkout.

Follow me on Twitter @MakesMilk and on Instagram  @emmapickettibclc or find out more on my website www.emmapickettbreastfeedingsupport.com

This podcast is presented by Emma Pickett IBCLC, and produced by Emily Crosby Media.

Transcript

This transcript is AI generated.

[00:00:00] Emma Pickett: I'm Emma Pickett and I'm a Lactation Consultant from London. When I first started calling myself Makes Milk, that was my superpower at the time because I was breastfeeding my own two children and now I'm helping families on their journey. I want your feeding journey to work for you from the very beginning to the very end and I'm big on making sure parents get support at the end too.

Join me for conversations on how breastfeeding is amazing. And also sometimes really, really hard. We'll look honestly and openly at that process of making milk, and of course, breastfeeding and chest feeding are a lot more than just making milk. Thank you very much for joining me for today's episode. I'm going to be speaking to Sarah, Sarah Perry from Leeds.

Who is a novelist, and a poet, and a writer, and a mum of a nearly two year old. And still breastfeeding, so we're going to be talking about natural term breastfeeding, we're going to be talking about Sarah's breastfeeding journey, and we're also going to be talking about the fact that Sarah is a wheelchair user, and what that has meant for her breastfeeding journey.

And I'm hoping by having that conversation, we will also inform those of you who are Peer supporters and health professionals who work with parents and mums who are wheelchair users because I think it's important we always have those guys in mind. Thank you very much for joining me today, Sarah. You're welcome.

Thanks for having me. So before we get started on talking about your poetry and your writing and all the other work you do, um, let's talk about your nurseling. So tell me who you have today. Who, who's, who is your little nurseling? So my little one is called Zangi. 

[00:01:42] Sarah Perry: Um, he, yeah, he'll be two next week. Um, although I know by the time this comes out, he'll have been two already.

Um, but he is, yeah, he's great. He's so much fun. Um, he's full of life. He's got like the biggest laugh in the world. Yeah, he's just great. He's just great to be around, really. 

[00:02:02] Emma Pickett: And he's still breastfeeding at the moment. For those people who are in the world of breastfeeding, a two year old, nearly two year old, what are his breastfeeding patterns right now?

[00:02:10] Sarah Perry: It's variable, which I think is probably normal. Um, he will always feed at bedtime and first thing in the morning. I say first thing in the morning, like he'll feed from like 4 a. m. until he decides we're getting up. Like he's a, he's a kind of very active early morning feeder. And then he'll feed if I'm with him during the day, so I'm, I'm with him, uh, two weekdays and at the weekend, um, he'll feed at nap time, he'll feed when he has an injury, when he needs some emotional support.

And then like his feeding just shoots up. I mean, it's so interesting cause we just did like the kind of Christmas, New Year period. I live in Leeds, but our families are down South and, um, we did lots of kind of moving from house to house and seeing, seeing people he loves and saying goodbye. And he was just nonstop feeding the whole time, um, which I found really challenging.

But I knew it was just a phase and I understand like, obviously it's, it's cause he's getting loads of comfort and constancy from that and I'm really happy to give that to him. Uh, but it was also a lot like, I think being around relatives, some of whom are maybe less comfortable with breastfeeding a two year old and, uh, yeah, it's just a lot, isn't it?

I think like dealing with all of the, all of the dynamics of being at a Christmas dinner table and having someone being like. 

[00:03:32] Emma Pickett: Mummy milk! Yeah, yeah, I totally relate to that. Yeah, lots of parents I work with tell me that um, it's that, it's that holiday period where things really come to head and, and people who previously have been really supportive of the fact you're breastfeeding either go kind of mysteriously silent or you get kind of funny little glances and um, do you, do you, I mean do you mind me asking, do you have anyone in your family who's actually saying this isn't good, this isn't right, or is it more just sort of subtle than that?

I think that there are a few people 

[00:04:00] Sarah Perry: in our collective families who at times in the last two years have voiced discomfort with extended breastfeeding, who aren't necessarily saying it now. Do you know, I'll be completely honest, before I breastfed, and I'm a peer supporter now, like I'm very passionate about breastfeeding, like, if it's the right thing for an individual, I like, have learned about natural term weaning, is that what you call it?

[00:04:24] Emma Pickett: You can call it that, yeah, natural term weaning, natural term breastfeeding. I think you get to own the term, Sarah, if you want to call it carrots and peas, you can call it carrots and peas, but yeah, I would say natural term. And 

[00:04:34] Sarah Perry: breastfeeding, and the fact that it is. you know, extremely natural for it to go on multiple years.

But before, before that, like I really didn't know people breastfed even till one. I think like when you're in this world, it's easy to forget how few people breastfeed. Um, and I think that actually, like, it was just not my experience that I don't think I'd ever seen anyone feed like a big infant. So I do get it.

I understand why people might feel confused about it and they want to be supportive, but they don't, they don't really know how or they like want to ask questions, but they don't want to say the wrong thing. And I do understand it. But yeah, it's, it's just one of those things, isn't it? It can, it can feel a bit uncomfortable.

[00:05:17] Emma Pickett: Yeah, I think that's, I think that's a really important message to highlight. I think, I mean, if you grew up in the UK, most people do not see older toddlers and older children breastfeeding. And when I say most people, I mean, 99. 99 percent will not see people. I mean, you know, before I became a lactation consultant or became a peer supporter, I think, I remember one mother breastfeeding a toddler in front of me.

That's the only time in my life I remember seeing that happening. Um, you know, you don't see it on telly, you don't see it in, in media, it's just, but I guess social media's changed that a little bit, but because of algorithms, you're not in it unless you're in it. So, you know, if you're great Aunt Nellie and your idea of going onto the internet to, you know, look at curtains and, you know, research your holiday to Tenerife is how you spend time on the internet, you're not going to run into, you know, Fabulous Tomorrow, the celebrity who breastfed their three year old and And it just doesn't, and as you say, what isn't normal to us is uncomfortable and weird.

And when they don't know how to talk about it, that comes across as possibly disapproval, when actually it could just be, as you say, not wanting to say the wrong thing. So having empathy for that point of view I think is really helpful, because it helps us to understand how to have conversations. Because if we are immediately defensive, They go into panic mode, and then you just get this negative vibe rubbing off each other.

Um, whereas actually, maybe if we come from a place of empathizing with them, it helps us get to the right place for having that dialogue. So Fabulous Zangi was using breastfeeding as his kind of regulation tool, which is totally normal. Um, what's a typical night for him? So you mentioned that he breastfeeds at bedtime.

Breastfeeds in the morning, that classic 4am grazing on and off, which everyone will be nodding at while they're making their breakfast while listening to this. Um, what happens in between that, if you don't mind me asking, what's a typical night for you? 

[00:07:00] Sarah Perry: I, I feel like I remain endlessly optimistic that we're entering a new era and then like, he catches a cold or he gets teeth.

teeth coming through, and teeth seem to take like 75 million months, like one tooth, like, um, I really thought teething would be like 48 hours, boom, it's out, but these back ones, man, he's been teething for so long. I love 

[00:07:23] Emma Pickett: the idea of 48 hours, boom, my, my, uh, husband's mother claims that, no, my husband's grandmother claimed that one of her children had all her teeth out overnight, one night.

Can you imagine if that would be true? That would be amazing. It would be amazing but also flippin terrifying, like, you know, American wealth in London type territory, if they all arrived in one night. Yeah, sometimes they just take such a long time and the word teething implies you're gonna see teeth at the end of it and sometimes nothing happens.

It's just 

[00:07:51] Sarah Perry: dribble and gums. He wakes definitely, you know, between going down and the like 4am beginning, I would say that up until the last Probably up until October, he would wake four or five times between those stretches. We've had like really bad sleep with him. It's sort of now, it can be like that, it can be like that if he's ill, or if, you know, when we first got back from Christmas and he was, you know, it's the similar, it's all the same times that he ups his best breastfeeding, he also ups his nighttime comfort seeking.

You know, on a good night now, he'd probably wake once between us putting him down and 4 a. m. I would say on an average night is probably twice, maybe three times, but it's better than it was and 

[00:08:40] Emma Pickett: I feel like, you know, we're on a path. Yeah. And are you co sleeping? 

[00:08:45] Sarah Perry: Yeah, me and him sleep together. Yeah. 

[00:08:47] Emma Pickett: Yeah.

Yeah. That all sounds so normal and so very, very typical. Doesn't mean it's easy though. It doesn't mean it's, you know, easy going. I mean, waking up even once or twice can be tough depending on, on your sleep patterns. Um. But yeah, so, so let's talk about Zanki's very early breastfeeding experience. So you've, you've touched on the fact that you didn't necessarily have a lot of personal experience of, of certainly natural term breastfeeding before you got pregnant.

Um, what were your feelings about breastfeeding before you had him? 

[00:09:17] Sarah Perry: Yeah. It's so interesting to look back on that because I felt very, um, conflicted and knew I was going to try and like give it a go, but I wasn't like, I guess I wasn't conflicted. I just, I wasn't putting any pressure on it. I have like really, like people really close to me who chose not to breastfeed and have obviously like gorgeous, beautiful, bonded relationships with their kids.

And, you know, I could see all the positives of that decision for them and like made me feel in a really nice way, like not under pressure about it because I could like see this alternative that could work. My mum breastfed me and both my brothers, but for different lengths of time, for different reasons.

And, you know, was, was super supportive about me trying, but was also like, not it's the be all and end all about it. Um, and so I sort of felt a bit like, let's see. And because I have lots of, um, I have multiple health conditions and quite a complex health landscape, and I'm a wheelchair user, like you've mentioned.

There are lots of other things going on in my body, which are a bit complex, but I have a set of symptoms, which is called dysautonomia. And, you know, in the quickest way possible, that means I have autonomic dysregulation. Your autonomic nervous system is all the things that kind of happen automatically in your body.

Things like blood, blood pressure and heart rate is an example. My blood pressure is really, really very seriously impacted by dehydration. Um, and I had no idea how breastfeeding would impact those symptoms. Um, I didn't know how safe it would be for me to have broken sleep. And I think also, I have a history of eating disorders.

Yeah, I really have now. Um, but I, I was conscious that breastfeeding can, um, can can be complicated for people with eating disorders. I'd read a book about how breastfeeding can kind of accidentally put you in a calorie deficit and that for people who have a history in particular of anorexia, that can be quite triggering because the calorie deficit is a feeling which can be quite addictive.

If you've, if you've had those eating disorders and it can accidentally trigger a relapse. Um, and so I was like very cautious. I was kind of like, let's see, like, let's see how I feel. Um, I was under perinatal mental health care during my pregnancy for a variety of reasons, and I think that my, um, my kind of team were also quite cautious about it, and were very concerned about how, um, Kind of putting pressure to breastfeed might, might negatively impact my mental health.

And so it was a very like, it was quite a laid back thing. It was like, yeah, we'll give it a go and we'll see, we'll see what happens and maybe it'll be great. And maybe we'll combination feed and, you know, I really want to try it. So let's give it a go and see. And I think like once. Zangie was born, like, it just did not feel that way.

It felt urgent. It felt like 

[00:12:06] Emma Pickett: And that urgency was coming from you and from him. It wasn't coming from an external place. From me. From me. Like, 100 percent from me. 

[00:12:14] Sarah Perry: Um, I, I just, all of the ways I'd felt before, like, I couldn't really access them and it felt like something I needed to do. And it, it was like a really Yeah, really strong.

It became like a real compulsion that breastfeeding like needed to happen and it needed to work and I needed to do it. 

[00:12:36] Emma Pickett: Does that feel positive when you word it like that? Or does that feel maybe not so positive? Because I guess the word compulsion is not normally a word that We've been broider on pillows and think of it as a positive word.

I mean, do you, does that, when you look back on that, does that, does that feel like, wow, my body really wanted to breastfeed amazing, or does that feel like, Oh, I lost some of that laid backness and that isn't comfortable. 

[00:12:57] Sarah Perry: I think it's so hard for me because breastfeeding now is so great and it's such a wonderful, like source of joy in my relationship with my child and he gets so much comfort from it.

And we have like a laugh about it. And like, that just wasn't the experience in the beginning. Like, I don't think it was very healthy and I think, you know, we can, we can go into it a little bit, but. I think the extent to which it had become a preoccupation and a really mentally detrimental one, I was worried to share with my mental health team, and I kind of hid from them because I was scared that they would try and get me to stop.

And I think that there was a lot there around, like, Yeah, I think some of the kind of natural, hormonal and quite challenging things that can come up for us all in the postpartum period, um, for me kind of got misdirected with a, with a kind of, and you know, breastfeeding wasn't going very well. So I think, I think it's partly because of that, right.

It became the thing I had to fix. It became the thing that I needed to make better. It became like, the project that if I solve this, then like, you know, I would, I would be doing it right. You know? 

[00:14:10] Emma Pickett: Yeah. Do you mind me asking you about your birth experience? How was, how was the birth for you? And was that a similar situation in that you had to be, you know, you had lots of conditions that had to be thought about during birth.

I guess your blood pressure was a concern as well. Did you feel able to kind of take control of that birth process? 

[00:14:27] Sarah Perry: Yeah. So I, I was under obstetrician care. Um, and I was considered high risk and I didn't have very many choices about like where I could birth and really wanted to have a water bath and was, it was kind of an extended conversation that each time came back to quite a hard no.

Um, yeah, it was, I was, I was very scared of birth for lots of reasons, lots of them to do with past trauma as well. Um, and I worked with, uh, with an amazing midwife called Lisa, a perinatal mental health midwife, um, around kind of processing some of that trauma and preparing for birth and preparing a plan that really, because I didn't have many choices about, you know, what was happening with my body, like a plan that enabled me to communicate what my mental health needed and what my boundaries were.

And so, that's It's a really, it's really amazing, really, that I felt that I did have that control considering how few choices I actually had. But I did, and, um, the midwife who delivered Sankhi was called Rebecca. She was absolutely cracking, um, really good fun. I just remember like so much water just pouring out of me and just being quite concerned that she was getting so wet.

Um, but she was obviously used to that. But it was very, very quick. It was, I think the like medical term is precipitate, um, and it was quite frightening cause it was like extremely intense kind of, uh, Um, and, uh, that was, that was the only really kind of, uh, I guess the most difficult aspect was just how fast and how extreme it was so quickly.

Um, but yeah, I, I, I had a vaginal delivery and, um, it was, I don't know, I guess. It was a birth. It 

[00:16:21] Emma Pickett: was a birth. There's someone called Two, he got here somehow, we don't know, we've seen him around, we know he exists. Yeah, you're describing it with some humour and some, obviously you connected with the people that were supporting you during that period, which is great.

Sadly, too often on this podcast we have people who tell negative stories, so it's lovely to hear that you really had that connection with Rebecca, that sounds great. Um, and then you mentioned you had some early breastfeeding challenges. Tell me about some of those. 

[00:16:47] Sarah Perry: So we were in hospital for 10 days after Zangi was born.

He had some health issues and, um, being in hospital with a newborn is just immensely challenging. Like, I think that I know a few other people who have had, have had extended stays in hospital longer than that. And, um, You know, it's, it's a really challenging context to be recovering from pregnancy and birth and finding, you know, getting to grips with all of those hormones and all of the feelings of, of kind of being a parent and it's like, he's my first child.

So, you know, there's all of that as well. And also where he was unwell and we were in hospital because he was unwell, that was quite scary and I think that, you know, there was just a lot of emotions going around. So I, when I, when I first, first had him, I actually, this is like, this is, this is a bit. This is a tricky thing, but I wasn't allowed to breastfeed him in the beginning and I wasn't even allowed to give him my express milk because I was on lots of medication for my health stuff.

And I'd spent a lot of time with my obstetrician and my midwife ensuring that all the medication I was on was breastfeeding friendly because I knew it was something I wanted to try. But because that wasn't in writing anywhere, the hospital were like, we can't let you. Breastfeed him. Oh, Sarah, that sucks.

It really rubbed in the shower. And so that was really challenging for the kind of first. day, probably he was given formula, which I'm all for formula. Like I'm not anti it. Like I think it's, you know, obviously incredible and when it's necessary, then or wanted, then that's great. But in our case, it wasn't necessary or wanted.

And so that was really hard. Just 

[00:18:35] Emma Pickett: because a letter didn't exist. I mean, gosh, anyone who's in this situation supporting anybody on medication, that is. That's the big red, the big, yeah, the big highlight of this conversation, even if you stop listening now, gosh, you've got to have that in writing and you've got to have copies of that letter and you've got to have it in your file and you've got to staple it to your baby's cot.

[00:18:54] Sarah Perry: Because I just assumed it would be on my record, you know, because I'd had these conversations with the medical professionals multiple times, um, but it wasn't. And, um, so that was that. And then I have, so I have inverted nipples. Um, they're actually no longer inverted. 

[00:19:11] Emma Pickett: I was going to ask you, I didn't want to necessarily get too personal, but yeah, that's lots of people who start out with inverted nipples.

Never see them inverted again. Once you've breastfed for two years. Yeah. Um, so. So you, in pregnancy, had you had conversations about inverted nipples and, and what that might mean for breastfeeding? How prepared did you feel? I 

[00:19:30] Sarah Perry: had, 

[00:19:30] Emma Pickett: I had. 

[00:19:31] Sarah Perry: Um, I thought I had them and I mentioned it a few times, but I never like whacked them out and showed anyone and people were a bit like, well, you might do, but like, no one really was like, Okay.

Like let's, you know, but, um, I, I'd sort of had like a couple of brief conversations. Someone from the health visiting team would come out to talk to me about breastfeeding and, um, they, you know, we had a brief conversation about nipple shields. But when, so when Zanki was born, like he absolutely could not latch on.

I mean, there was like it, you know, they were very inverted and he could just couldn't do it. So the, the kind of midwives, we, we had three days in transitional care and then we had less than 24 hours at home and then we came back to hospital and then we were on a peds ward. And in transitional care, I had lots of people there kind of.

Obviously engaging in the feeding process, both me and Zangie were like patients because he was having health stuff and so was I. And so we, I had people coming to monitor me and people coming to monitor him. And some of them were like, no, he's, he's not doing as well as we would want. So we're going to bottle feed him because we need to get food into him.

And some of them were like, we really want to help you establish breastfeeding. That was quite complex. It was a lot of mixed, a lot of mixed messages. Lots of, of course, the nature of, of hospitals and underfunding and under resourceness is that the teams are constantly changing. You don't necessarily see the same people even day by day.

And everyone had a different approach. Everyone was telling me different things. Everyone was telling me to try different stuff. Um, and, you know, by the time we left transitional care, I felt, I thought he was feeding fine off of the nipple shields. And then when we went back in to the peds ward, there just was none of that support obviously, because we weren't, we weren't in a ward where there are people there to support breastfeeding in the same way.

Um, and I was no longer a patient either, so I, I didn't have anyone kind of looking out for me. It was just Zangie, Zangie on the ward. And I think at that point, I just had this really strong feeling that it wasn't going well, like, I'd um, I'd heard, I'd had someone come and see me just as we were discharged, who later became like, an absolute, I mean, anyone in needs will know about Debbie, like, she's just an absolute legend, she's like, one of the people here on the infant feeding team who supported like, thousands and thousands and thousands of people to have a breastfeeding journey and like, a hundred percent like, Attribute to her, like lots of the success of those early days, I used to just aim to like get to Thursday so I could see Debbie again.

Do you know what I mean? And, um, but she'd popped in to see me just before I left transitional care. And she, one thing she'd said with me that really stuck me was. with me was like for every kind of three sucks you want to swallow. And so I was sat there in the peds ward and he was feeding and feeding and feeding and of course cluster feeding is a thing but he did not stop like he was just on 24 hours like constantly trying to feed super unsettled crying loads or being taken away for examinations or having you know medical checks and all this stuff going on and.

I, I could just not, I, I just didn't think he was swallowing enough. I was like, we're getting like 15 sucks before we get a swallow. 

[00:22:48] Emma Pickett: Okay. 

[00:22:49] Sarah Perry: And. You know, it just didn't feel like it was quite working, but it wasn't until we were discharged and then we were back at home and the, um, perinatal midwife team sent their breastfeeding specialist out to me and she said, yeah, no, he's not, he's not feeding as well and he's lost weight.

[00:23:09] Emma Pickett: I'm so sorry that's your experience of being in the paeds ward. I know Lindsay Hookway would have a few words to say about that. She's been doing a lot of work trying to improve care in general paediatrics. I mean you're, you were going back into hospital with a less than two week old baby. He was three days old.

And you were going to the General Peds ward with a three day old baby and being put in an environment where you weren't going to be getting breastfeeding support. I mean, that is, I mean, what's more important than how he's being fed? And it's just, it's just mind boggling, isn't it? It's just so hard to get your head around how the system developed in that direction.

I mean, and why someone on the General Peds ward can't say, right, you've got a three day old, obviously you're going to need breastfeeding support. Let's make sure we get somebody up from the, you know, this particular ward. I mean, it's, it's a case of getting in a lift. How hard should that be? 

[00:23:54] Sarah Perry: Well, we were there for more than a week, and I, every day I asked for help and I asked for mental health support and, and feeding support.

And we did have a midwife from transitional care come one time and, and spent a lovely half an hour with me and they were really supportive. But it wasn't enough, and it wasn't the infant feeding team who I did, I do think I really did need to see at that point. 

[00:24:15] Emma Pickett: Yeah. I mean, if you're identifying 15 sucks per swallow, and you know, as a brand new mum, you sense that, you know, you'd already been given the information that wasn't right, and then you just didn't have anywhere to go with that.

What impact is that going to have on your mental health, let alone on Zaggy's feeding? Yeah. I'm just really sorry that you were in that situation. Can I ask you a little bit about your nipple shields journey? Yeah. Is that something that someone had talked to you about antenatally, or is that something that someone had given to you after he was born?

[00:24:43] Sarah Perry: Yeah, antenatally and then after he was born. Um, and um, I mean, you know, they were really helpful, I think. I also was keen to stop using them, um, and I mean, you know, fast forward, however many weeks down the line, he had a tongue tie release and, um, we went cold turkey and I never used nipple shields again.

[00:25:07] Emma Pickett: Okay. I was just about to ask you, how did you drop them? And your answer was, you just went cold turkey. So, so that combination of inverted nipple and tongue tie is. Very difficult combination. That is, that is tricky to, for a child to latch on. And 

[00:25:22] Sarah Perry: then throw in like my wheelchair, my health staff, like it was just a lot going on, I'm not gonna lie.

[00:25:27] Emma Pickett: Yeah. So when you were using the shields, um, you'd had help sizing them, you were happy about, you know, how you were putting them on, that all felt good and positive, but there was something in your gut that said, I don't want to do this forever, this doesn't, isn't my long term. We definitely started off using them wrong, but Debbie showed me how to do that right.

For anyone who doesn't know, can you tell us what, what you mean by doing them right? What's your, what are your tips 

[00:25:51] Sarah Perry: for using shields? Yeah, absolutely. 

[00:25:52] Emma Pickett: So turning 

[00:25:52] Sarah Perry: it inside out and popping it over the nipple and then sort of like using the suction. I'm like, I'm gesturing now, which obviously you're gesturing, which on a 

[00:26:01] Emma Pickett: podcast is very helpful, Sarah.

Thank you. But yeah, we know exactly what you mean. So 

[00:26:05] Sarah Perry: twitching my breath. 

[00:26:07] Emma Pickett: So rolling the sort of shield down a little bit. So you're losing some of the height of the nipple of the shield. So slightly turning it inside out. Some people compare it to like a sombrero. Mexican hat type thing. So you're rolling it down and then when you put it over the nipple and you let the shield create its full length, it's going to naturally have some suction that will pull the nipple inside.

So you're going to get, if you've got an inverted nipple, that may even be enough to avert the nipple entirely and hopefully then fill the shield. And by having that bit of suction, it's also going to help the shield to stay on as well, which is also super useful. Um, yeah, cause shields falling off and flying, you know, two meters away from your wheelchair is not the most useful experience to have as a new breastfeeding mom.

Um, so going cold turkey for the shield thing, some people will be listening to that and going, yikes, how did that work? Did you have a really difficult 24 hours where he just wasn't latching as well, or did he, he was in a place after his tongue tie where it just happened? He could manage fine anyway.

[00:27:02] Sarah Perry: Well, we waited a really long time for the Tang Tai release and in the end, my parents paid for it. Um, like just, you know, I think you've got to be frank about these things sometimes. Like, we, we got, we got it at the point we did because we had the resources to have someone else finance it. He was like five and a half weeks or something.

I don't know. Like it was quite far in. And so I guess at that point, maybe like his mouth was a little bit bigger. Um, but what had happened was that before we had the tongue tie release, he'd latched on without the shields, maybe three times. And the first time it was a complete accident. And I actually talk about this when I'm peer supporting, because I was sort of told later that it's a technique, that he'd had a bath and I'd like, I was just in my pants giving him a bath.

And I got him out and we wrapped in a towel together and he latched on. And, um, yeah, later it was explained to me that that's called rebirthing and that sometimes kind of both being wet together in the water and then coming out of the water can trigger the instinct to feed that, that birth can as well.

Um, and so that had happened a couple of times and I'd started to try, like, to just be a, be kind of like topless around him when he came out of the bath to see if that would, and he would latch on. And, and so I knew he could do it, like, and I think that that was like that, that was something again, Debbie said to me, it was like, we know he can, like, he can do it.

He's done it and he feeds well in those moments. So like, you know, he can. And so I kind of held on to that. And then as I was leaving a breastfeeding support group. The day before the tongue tie, someone else just said to me afterwards, go cold turkey, never use them again. You know he can do it. And like, I, I'm very, very literal.

And I, I was like, Oh, okay. That's an instruction. Like, so I don't think I realized that was a suggestion. I thought it was like, Oh God, I'm glad someone told me. I didn't realize I had to do that. So I was like, okay, so now once we've had the tongue tie, I can't use the nipple shields anymore. Oh, wow. Okay.

That's what I just thought. Yeah. But to be honest, I think I found them to be a bit frustrating. When I read my writing in a little bit, you know, they were just always all over the house. I was very, very worried about bacteria, I think, because we'd been in hospital in this early phase with a very unwell baby.

Um, I was terrified of infection. I was like washing my hands like, you know, 10 times an hour and, um, was very like stressed about the nipple shields as a possible, um, contaminant, which, you know, is not grounded. In fact, I just want to say for people listening, you know, like, um, that was very much me, I think kind of being a little bit unwell in that time.

But I, um, I found them quite stressful and also because we were like, we were doing all this other stuff, you know, we were using formula, we were pumping, we were putting that milk in the fridge, he was trying to feed, all of these different things. I was ready to like, let something go. Yeah, 

[00:30:05] Emma Pickett: I can imagine, yeah.

And he was too, obviously, from what you described. He was absolutely ready as well, and he was obviously feeding effectively without them. A little advert, just to say that you can buy my four books online. You've Got It In You, A Positive Guide To Breastfeeding is 99p as an ebook, and that's aimed at expectant and new parents.

The breast book published by Pintra and Martin is a guide for 9 to 14 year olds and it's a puberty book that puts the emphasis on breasts, which I think is very much needed. And my last two books are about supporting breastfeeding beyond six months and supporting the transition from breastfeeding. For a 10 percent discount on the last two, go to Jessica Kingsley Press, that's uk.

jkp. com and use the code MMPE10. Makes milk. Pick it, Emma. 10. Thanks.

You mentioned that you were pumping and giving formula for a while because you were worried about his weight gain. How did things carry on after the tongue tie? Did that, were those things able to sort of fall away as well once the tongue tie procedure had been 

[00:31:13] Sarah Perry: done? It took a little while, so I think I was given some, some patchy advice when, when we got home from the hospital and he was, um, had lost quite a lot of weight having, he'd regained his birth weight in the beginning and then he lost lots of weight.

Which again, I think is quite common with, um, babies with tongue tie where, where maybe it takes until like week two or three for, for that struggle that they're having to kind of play out in terms of the amount of milk that they need. Whereas in the beginning, maybe he was getting enough to regain his birth weight and then, um, and then it really, really dropped off.

And I think I was told like, quick, get some formula in him. And so I did. And. Maybe I'd forgotten or I didn't understand or, you know, I was sleep deprived and scared. And I just didn't realize if I, when I was giving him formula, wasn't also pumping that that would impact my supply. And so there was a little gap then between them and seeing the infant feeding team.

And obviously those little gaps, even if they're a week are quite, um, instrumental in those times. 

[00:32:13] Emma Pickett: Um, 

[00:32:13] Sarah Perry: and so I like had a, had a big dip in supply and had to rebuild that through pumping basically, but we got there and, uh, And I think, again, that this is where maybe if I'd been able to retain some of my chill from, from pre having him.

[00:32:29] Emma Pickett: You were chill. Your chill came out in a different form. It went, it went to different places. It went another way. 

[00:32:36] Sarah Perry: I think at that point we could have been like, right, let's combination feed, cool, that was always on the cards. Here we are. And instead I was like, I will eliminate all formula. I will get my supply up.

I will feed my baby with my boobs. And I think like, yeah, it was a bit, it was a bit of a, it was a bit of a, it was a bit Uh, what should we say, a passion? Yeah, 

[00:32:55] Emma Pickett: yeah. But, but you listened to that instinct that said that's what you wanted to do. That, I mean, that doesn't feel unhealthy. I mean, did it, did it feel unhealthy?

You mentioned that you were under the care of the perinatal mental health team. How was your mental health at that, during this stage? It was, it was up and down, I think. Um, I think, I think probably. 

[00:33:13] Sarah Perry: You know what, maybe I'll read my writing to you, and 

[00:33:16] Emma Pickett: then we can Yeah, let's do that. That would be lovely.

So, as I mentioned at the beginning, you are a novelist and a poet, and you do different kinds of writing. Before we hear what you've written just now, tell me about your novel. 

[00:33:25] Sarah Perry: Um, yeah, so I publish as S. K. Perry. There's another Sarah Perry who writes, and I'm not her. Okay. My novel is called Let Me Be Like Water, and I wrote it a very long time ago, more than ten years now.

But it, um, is set in Brighton, and it It follows, um, a young woman in her kind of early 20s, she's 22, through the first year of grief after very suddenly losing her long term boyfriend. And so I wanted to write about, um, kind of, uh, intimate partner loss, but from a very young perspective, which is often uh, not talked about.

Um, I wanted to write about grief and I wanted to write something kind of lyric, um, by which I mean, yeah, focusing on feelings and, and what it is to be a person really. So yeah, that's, uh, there's lots of crying, but there's some jokes as well. So that sounds like your kind of thing. 

[00:34:18] Emma Pickett: Yeah, that sounds great.

I love that. Okay. So, so did you say let me be like water? Yeah. Yeah. Okay. That's a beautiful title. Um, And is a novel something that kind of bubbles up onto the surface again for you, do you think? Or does poetry feel like your sort of main, main bread and butter? What sort of direction do you think your writing will go in in the future?

[00:34:38] Sarah Perry: No, I mean, I've nearly finished my second novel. I'm working on it. I'm a creative writing lecturer at Leeds and I teach prose. That's my, that's my, um, my kind of, A niche, I guess, but yeah, I write poetry, um, more for myself, for the process. And I use, um, I use like writing poetry in workshop settings and kind of, uh, community environments as a tool for kind of therapeutic.

work. So processing things through creative writing and, um, 

[00:35:09] Emma Pickett: okay. You mentioned you've done some, you've got a therapeutic writing group for, for new parents and mums as well. We've been 

[00:35:17] Sarah Perry: meeting for almost nine months. We're about to finish this round, but yeah, um, kind of thinking about the perinatal period and indeed before that thinking about conception, um, all the way through to where, where the parents are at now.

And actually, you know, one of the people in the group has a, as a kind of eight year old. So it's not, um, it's not an immediate postpartum, not always, but for some of us it is. So, 

[00:35:42] Emma Pickett: yeah. Yeah. I mean, anyone who's listening, who is a writer and a new parent, um, if you've been writing the novel since you've given birth in the first couple of years of Zanki's life.

[00:35:52] Sarah Perry: When I went 

[00:35:53] Emma Pickett: back to work, I went back to it because I have to, 

[00:35:56] Sarah Perry: um, but I thought I'd write loads during, um, And actually, I, like, wasn't ever able to put him down because he just wouldn't allow it. Um, and I was too tired and I just didn't, I didn't have the brain. But, um, but yeah, I'm writing now and I have been actively writing for almost a year now.

Yeah. 

[00:36:15] Emma Pickett: Okay. I have had lots of, I'm in North London and the number of North London mums who tell me antenatally, Oh, I think I might write my novel in maternity leave. And I'm like, yep, good luck. I hope you do. I genuinely hope you do. But it's surprising how often people don't. And I think when you're a writer, forgiving yourself for that and allowing yourself not to write is actually important and then taking that pressure off yourself, as you say.

Um, there's a lovely book by someone called Naomi Stadlin, which is all about what mothers do and how sometimes it doesn't look like they're doing very much, but that's absolutely not true. We're doing 500 things at once and, and letting go of tasks being how we define ourselves is, is a really important part of mothering and parenting, I think.

[00:37:00] Sarah Perry: Although if people do want to read writing about becoming a mum, there's a poetry book about to come out called Surge by a friend of mine called Maria Ferguson. And I've not read it all, but the bits I've read are just beautiful. And I think that it's going to be a really powerful book for people processing this period and certainly like reading a novel is quite challenging, but maybe reading a couple poems might feel a bit more manageable.

And so yeah, that's worth checking out. And I think like, I mean, I don't normally write, I write fiction, so I don't write about my real life, although obviously the fiction I write is informed by my life. Um, but my poetry is often quite autobiographical and I think that I haven't fully found like, The edges of what I want to share in writing and what I want to just write.

Um, and so yeah, when I said to you this isn't quite a poem, I'm not sure what it is. I think it's, I think it's some writing that I've done and we'll see. Like, let's see in ten years time I'll probably write a novel about motherhood and it won't. You know, like, these poems that I'm writing now will probably become something else.

Like, a long, long way down the line. We'll see. 

[00:38:03] Emma Pickett: Well, I'm excited to find out. Um, there aren't many novels about new motherhood actually. I mean, I read quite quickly and I read a lot and it's surprising how, how many kind of happy go lucky, you know, women running around London kind of novels there are, but they are very rarely people worrying about where they're going to next do their pumping and how they store their milk in the workplace and you don't often see breastfeeding being incorporated in real life.

It is an idea 

[00:38:29] Sarah Perry: A short story collection about breastfeeding as my next project. It's like on the, on the back of my mind as a, like, let's see when this novel's done, let's see whether have a play and see what comes out. 

[00:38:41] Emma Pickett: Okay. That would be great. Right. Okay. Let's hear what you've written. All right. Thank you very much for sharing this.

I'm going to sit silently and stare at you while you read and I'm looking forward to it. Go ahead. We change 

[00:38:52] Sarah Perry: nappies. We have interrupted sleep. We feel inadequate in the face of crying. We struggle to feed our babies and then we are the ones crying. We piss ourselves. We shit ourselves. We have too much laundry to do.

I have never known love like this, so expansive, so peaceful. I do not know how I will leave the house in my wheelchair with my baby, and then so soon I have to because feeding won't work. My sling holds him close and I steer along pavement swearing at parked cars pulled in so close I have to find the drop curve and swerve out into the road with this only just living breathing tiny baby closed in my coat.

We feel awe at the unwieldy and intricate way that life begins. We are breathless in the knowledge of its precarity. I clench my jaw over every tiny bump my wheels encounter, and every metre or so I check he is breathing. I am so scared I cry, and then I cry because I am crying, and it's useless to cry when there's an appointment to get to, and my baby is hungry because I can't make enough milk.

I count ounces of pumped milk, subtract them from formula ingested, do more division and multiplication than I have since school. I make intricate charts on the fridge and we sterilize, pump, wash up, mix powder with boiling water. We eat flapjack and fennel and learn hundreds of facts about supply and latch and duck.

I wash my hands hundreds of times a day, I find nipple shields all over the house. I cry, we cry, I dream about the charts on the fridge in the minutes I manage to sleep. I count millimetres of milk while stroking my baby's head, I love him, I love him. We dread the times of day that tiredness breathes anxiety in the gut, the same time as darkness lands around the trees outside.

I am obsessed and afraid and so happy when I look down at his perfect cheeks and he is breathing. He is so small, people say, and he is, and I weigh him three times a day, like his body is my body back when anorexia made my mathematics do loops round calories and minutes and pounds. His fat is a victory.

We gather in breastfeeding group and hug each other and feel courage you only feel with another person's eyes looking into your own. We are terrified of mice infestations on sepsis and SIDS. Everything is a threat to this new and precious life. We run out of nappies just when there's shit everywhere.

We forget a change of clothes the day pee leaks out. We don't really care about piss and shit. They are nothing in the face of attachment theory and the sense we might not be good enough at love. He is getting bigger. He is growing. I am less obsessed, but still terrified. We go outside as the weather gets warmer.

We warp out our breasts in public places. I warp out my breasts in my wheelchair. I warp out my breasts as he screams on my chest. The eyes all around like accusations. You shouldn't be a mother. You can't be a mother. No pram, just a lap, just a body and those faces, those women on the bus saying poor child with a mum in a chair.

My milk is a spell, my love is unending. We drink flat whites and block out the doubt. We eat cake, we rock, we nurse or we bottle feed or both and we do our best with what we have. Nose to nipple, sun hits tits and we smile. 

[00:42:09] Emma Pickett: Wow. Thank you, Sarah. That powerful is a word. Gosh, there's, you've really captured the mixed emotions and the fluctuations in emotions beautifully.

Sun on the tits feels like a something has to be, I talked about embroidering something on a pillow earlier. I think we need that on T shirts. Thank you. So, I mean, obviously some of that is Is really raw and painful. And some of that is a celebration of love and a celebration of progress. Um, you, you touch on the sort of judgment of other people when you were out and about with him in your wheelchair.

Um, can I ask you a little bit more about that? You, um, obviously sling wearing a baby wearing has been absolutely essential. Tell me about your journey with that. 

[00:42:52] Sarah Perry: Yes. I was so worried when I was pregnant about how I was going to carry him. Um, I use a power chair. So one of my hands is busy driving. You know, if you're a manual wheelchair, then use them.

Both your hands are busy driving. Um, and I just didn't know what I was going to do. There's not a single pram on the UK market that is compatible with a wheelchair. And I've subsequently found out it's, it's because there's like a kind of strange law within. a subsection of the highway code that means it's illegal in this country to carry a child in a power chair.

You're allowed to wear them in a sling but if you're not wearing them in a sling and the sling is holding their weight then it's against the law. Um, now I don't know if this has ever been tried in a court, and I think that if it was, you'd probably be able to use kind of human rights law and the right to have a family to argue against it.

I think that it's extremely archaic and discriminatory. But what it did mean was that it was almost impossible to find anyone to help us figure it out. Um, because people can't, because they wouldn't be insured and it's not legal and, you know, they could have liability brought against them. Um, but there's a Sling Library, um, in Leeds, as there is, I think, in lots of places across the country.

And the person that runs the Sling Library, um, works with Um, specifically with, with, with parents and with children with kind of additional needs with broad strokes. But one of the things that she knows about is supporting wheelchair using gestational parents who want to breastfeed or chest feed. And um, so she came out to our house and was just an absolute.

like magician. I mean, just to be completely clear, nothing she's doing is illegal. It is legal to wear your baby in a sling. Um, so, you know, that's not a liability issue for her at all, but she was just an absolute expert. She was incredible. She thought about, you know, how my back will be against a chair.

And so some buckles might be uncomfortable between my back and the chair. She thought about, you know, she, she'd researched my medical conditions and, you know, there are some, some things, especially when I'm. when things are quite bad that it's dangerous for me to do. And, you know, she, um, had thought about how my particular body could get the sling on and off because obviously all wheelchair users are different.

And, you know, some, some people have extremely different mobility in terms of their upper body and what, what we can do to get us a sling on and off. Um, she thought about, you know, all these things was incredible. And she recommended a sling to me, um, which we, which was a Najell, N A J E L L. Um, sling, and it's like a material sling that you'd wind around yourself, but it's like, it's already made and it goes on like a t shirt would and you tuck your baby in and tie them.

And it was just amazing. We ended up buying two of them. Um, and you can't, they're an EU product so they're not imported here anymore. But my brother lives in France so we got him to order one to France and then post it to me. But the Sling Library did have one, you know, it's just, um, I knew that I was going to use it for like a year.

Do you know what I mean? And it made sense to have my own. And, uh, yeah, so that was how I got around with him. Um, for, I mean, we used that sling for a very, very long time, um, maybe more than a year, to be honest with you. Um, because Different to if you're wearing a sling and standing and walking actually didn't need to like hold him because your lap could hold his waist.

Yeah, yeah. Okay. So it became, over time it became more like a seatbelt than, than a, than a carrier. But in the beginning, like absolutely it was holding him, you know, as a, in a, in a sling in the same with all the same safety precautions you'd take if you were like fully ambulatory. And yeah, that's, that's how we got around.

And I think it's a really interesting one, like one thing. I mean, one thing I really. noticed, like if, you know, I, I have lots of friends who don't use wheelchairs, obviously, who had prams and who would like walk with their baby in a pram. And, you know, often they'd put their baby in the pram and the baby would fall asleep whilst in the pram and maybe, you know, the baby might cry a bit and perhaps would want a little bit of milk, but they might settle because they were in the pram and or the car seat or whatever.

Um, but if you're wearing your baby on your chest in, in the wheelchair out and about moving from A to B, and I, I didn't drive, I actually do drive now, I passed my driving test a couple months ago, but you know. For the first, like, 20 months of, of Sangi's life, I didn't drive. We, we would just go everywhere in the wheelchair, you know, on the bus or on the train, but me and my chair and him attached to me.

Um, if he, if he was on my chest and he wanted milk, There was no space that could be created. Like, you couldn't even just pass him to someone else while you, like, went for a cup of tea and got a wee, you know, like, he's there, he's attached, and he, he, he's, like, on your chest, he wants it. And so there was a lot of, like, just having to kind of stop in the middle of a pavement and feed him, because I couldn't just keep going until we got somewhere.

Like, he's in the pram, he, okay, he wants a feed, but we'll just, we'll just get to the coffee shop where we get this, because he, it wasn't safe, like, he would be thrashing on my chest, like, give me the milk! And that was like something, um, yeah, quite unexpected, I think, to, do 

[00:48:14] Emma Pickett: you know what I mean? Yeah, no, that makes sense.

So, so you were doing a lot of public parenting of a little dysregulated person or maybe breastfeeding in public more than perhaps your mate whose baby would be settling in a pram. And you mentioned that you're not driving. So obviously there's a lot of bus stops and trying to get on the bus and waiting for space on the bus and people grunting because you're taking up space and, um, you mentioned the looks of other ladies on the bus in the piece of the writing you've just shown.

Is that was that based on a particular experience? Well, there was 

[00:48:43] Sarah Perry: one encounter I had where I sat in the wheelchair spot of the bus with Zangi on my chest and two people at the back of the bus had a conversation I could hear about, like how, how unfortunate it was for him that he had a disabled parent and how kind of, you know, that, that was, you know, I think, I think that.

Probably most people listening to your podcast aren't going to think this, but I don't think it's any secret that there are people out there who believe disabled people shouldn't have children. It's, it's cruel and wrong and that, you know, you're going to give them a terrible childhood because you're disabled.

And I think like, um, you know, what I will say is. I don't believe that obviously, but it takes a huge amount of resilience to exist as a disabled parent because 95 percent of places that are designed for families, like aren't wheelchair accessible, you know, like most baby groups happen in, in ways that in spaces that you can't access.

And I think like there are no prams, there's no, there's no advertising. I mean, my God, my Instagram knew I was pregnant before I did. And I think like the algorithm. Just fired products at me for, you know, a year and there was never, ever, ever, ever, ever a mother in a wheelchair. There was never any visible disability.

And I think you just get told over and over and over again, well, no, like you, you're not in this space. You don't belong here. Like there are no disabled moms. And I, I had to tell my insurance company that my wheelchair insurance company that I was having a baby because my wheelchair is insured in case something happens to it.

And, um, the company I was with at the time wouldn't insure me and they, because I said, you know, sometimes my baby will be on my lap and I know I'm not allowed a passenger under this insurance policy, but what can we do? Cause I need to carry my baby and they were like, well, this isn't really something that people come with very often.

It's not very normal, is it? For a wheelchair user to have a baby. Yeah, I know. And of course, it's just one person, but I think, you know, these things you, you, you, it happens over and over again and the discourse is there and it's like, it's hard to avoid and I think you have to be quite, quite resilient and quite, quite able to sort of, And no one's resilient when they first 

[00:50:52] Emma Pickett: have a baby.

[00:50:53] Sarah Perry: I was just going to say, 

[00:50:55] Emma Pickett: I'm just imagining you on that bus and even the most feisty wheelchair user who's, you know, been feisty for 15 years when you've got a tiny new baby on your, you know, on your body and you're feeling vulnerable in that postnatal period. You know, you've got to be superhuman to be able to brush that off and not let that affect you and I 

[00:51:13] Sarah Perry: think that those things were really hard.

And so I guess I don't even necessarily know that I had a baby that was more dysregulated than my friend with a pram. What I know is that, like, if I have a baby crying on my chest and I'm in a wheelchair, people are going to look at me differently than if you have a baby in your pram crying. And I, I know that there are people that are like, well, that baby's crying cause they've got a shit disabled mum.

Do you know what I mean? And they're wrong, of course they're wrong. Of course they're wrong. And like my, you know, my message to like anyone who is a wheelchair user or who's disabled, who's like thinking about having a baby or has one is like, we can absolutely do this. We are phenomenal mums. We like, we, we, we have things we can't do and we have things that we do do and can do that.

People who aren't disabled can't or don't because they've not had to, you know, grow those skills or learn that language. And I know my baby is going to be like compassionate and accepting and, um, and have a lens for the world that will, will serve, will make the world a better place. Like, you know, like. I, I, I know all those things, but then, you know, your baby's crying in a public place, on your chest, you're in a wheelchair, people stare at wheelchair users anyway, people stare at babies crying anyway, and the combination of the two at times felt like extremely challenging.

Um, and so, yes, there were physical things that were hard and, you know, I have, um, hypermobility, which means that my, my joints experience a lot of pain and aren't very stable. There were, there were challenges with holding and there still are actually, um, and kind of holding Zangi in ways that were safe for my joints and that were safe for him.

You know, there was the physical challenge of getting around, there were, you know, like, of course, there are challenges around the kind of infrastructure of the world and moving through it and being a mum in a wheelchair. I think the bits that I just really flawed me and I guess that really intersected with breastfeeding in ways that, that kind of, I hadn't really thought of was, was that emotional side of thing and the kind of heightened visibility and the, and the kind of, you know, I would, I would regularly.

I have to say, I remember doing this in the Leeds covered market. That's like this beautiful covered market in Leeds. And I'd gone there, um, I don't even know why. And I was in the covered market and Zanki needed a feed and there was no corner. Like I just had to stop in the middle of like the market and feed him in my wheelchair.

And on the one hand, like, magic, like, you've got a built in chair. I mean, my God, like, breastfeeders everywhere, chest feeders everywhere need, need more seats in City Centre so that we can sit down and feed our baby, right? Like, I never had to look for the bench, like, it was obviously there already, but at the same time, it's super urgent.

Like, I, there's no way I could get to somewhere a bit more discreet because he's, like, on my chest writhing, like, I need milk, I need milk. Now it's not safe for me to continue moving around in my chair. So I stop and just go. You have to get my boobs out and go for it then and there and I think like Yeah, like, that's, that's fine.

That's great. Well done me. But also at times I felt quite vulnerable, I think, um, as a wheelchair user, as a, as a feeding mum, as a mum. 

[00:54:18] Emma Pickett: So public on about three different levels. And as you say, people notice somebody in a chair, and they notice somebody breastfeeding, and they, and you're You know, you've got, you've got the double whammy and then how did things change as he got older?

In terms of positioning, can I just ask you about your, your favorite positions when he was little? What was, um, you said he was quite big and quite long, um, earlier. Did that mean that he was, his feet were starting to whack on the side of the chair? Did you have to change your positioning as he got older?

[00:54:45] Sarah Perry: Yeah, I mean, he kind of snuggles, it's a really beautiful thing someone said to me as well. Kids of wheelchair users know how to ride on your lap because they were riding on your, on your lap when you were pregnant, right? Like, I got around everywhere in my chair when he was in my tummy. Like he got used to riding in my wheelchair and feeling how my body moves when I go up or downhill, how my body moves, you know, in certain ways before he was even born.

And so I think, you know, me and him just work that out together. It's, um, Yeah, I guess, I guess his feet, but he just sort of snuggled in and kind of, I mean we did a lot of kind of cradle holding and I would like to just support my arms with, with kind of jumpers or whatever. It definitely helped when he could start to sit on my lap.

and kind of be upright and feed like a koala kind of position. Yeah, exactly. And that happened quite, quite young, to be honest with you. Um, he, like he, he had like net control from very, very young. We were very lucky. I actually think that as a wheelchair user, that made a massive difference to me. Um, because.

If I was in my chair or I was struggling with my body a bit, I wasn't also having to negotiate kind of really supporting his head for very long. But, uh, yeah, I mean, it's, it's now, now we rarely feed in the wheelchair anymore. Um, if I'm at home, I don't use the wheelchair in my house. My house is set up in such a way that I don't need to use it in here.

Um, and we'll, like, lie down together on the sofa or in bed. Sometimes we'll sit, you know, with my body very supported in a chair. But Yeah, positions wise, the hardest thing with positions was just my joints. And I, I think actually I've spoken to other people who have hypermobility or have, you know, issues with their joints and joint pain or, or joint, um, instability who also felt the same way.

I mean, you know, if you think even how much you might use your hands and if you have unstable joints in your hands, like so much pressure on your fingers and on your thumb, um, on shoulders on, you know, all of that. So. 

[00:56:59] Emma Pickett: Were you able to feed him in the sling? Did you do feeding with the sling attached, or did you have to remove the sling to be able to feed him?

Bear in mind in the beginning I was using nipple shields, so I was like 

[00:57:09] Sarah Perry: taking him out of the sling, getting my boob out, whacking a nipple shield on, popping him on, sat there in Nando's, you know, like, a lot, there was a, um, It was a learning experience for everyone around me and, um, but no, I, um, I didn't really ever manage to successfully feed him in the sling.

Um, I think I was very, very, um, combination of conscientious and anxious about him being in an extremely safe position in the sling. I guess he was in it so much he needed, I needed to make sure that his hips were in the right position and you know, all of those things that we should all do anyway. But I think when you have additional circumstances, you're probably like a little bit more, um, on top, like worried about those things.

I'm wanting him to be really secure. So when we would stop, I would kind of get him out and move the sling a bit and get, get myself out and help him feed. And then I would like pop him all back in again and secure him. So we didn't ever really do that. No. 

[00:58:06] Emma Pickett: Okay. And, and you mentioned, you know, obviously you're still breastfeeding now, he's not breastfeeding so much when you're out and about, so not so much of an issue these days, but as he was getting bigger, we've, we've now got the triple whammy of a wheelchair using mum, breastfeeding with a bigger child.

Did you, did that change, do you think, how the sort of Vibes you got from the public? A hundred percent. And 

[00:58:28] Sarah Perry: you know, I do still feed out and about, like I'll feed him. It's just not the same, is it? Like he's not feeding as much or as often as when he was little. I mean, you know, if he needs comfort, if we're in a new environment, if we go on a long journey, like on the train, you know, there's lots of instances where he wants milk and I'm in the wheelchair.

It's much harder for us both to be comfortable. Um, but. But like, I, I, I also sort of feel like we just both just kind of wriggle around a bit until we get there. Like, it's not as like, uh, maybe this is true for all people feeding a, an older baby or a toddler. Is that like, you don't really think of positions in exactly the same way.

You just like do what works in that moment. And then when it's not quite working, you have a little wriggle and you. Try something else. And, um, uh, so there's that, but I don't, I totally do. I feel way more self conscious feeding him now than I did when he was a baby. Um, and I think that's probably true for lots of people who, who feed beyond, I don't know what, six months.

[00:59:24] Emma Pickett: Yeah. Sadly in the 

[00:59:25] Sarah Perry: UK, that is true. Yeah. Um, he's 

[00:59:27] Emma Pickett: really 

[00:59:27] Sarah Perry: tall. Like he wears like size three clothes a lot of time. He's not even two yet. You know what I mean? Um, so I think probably. you know, if someone's a bit judgy about people feeding older babies, they probably think he's even older than he is. But in a way that's irrelevant.

Like, I think like once you have a a bigger baby or a toddler who's walking, who's maybe communicating, or, you know, and obviously not all older babies walk, but who just looks bigger is in a bigger body. I think that If someone's going to judge you, they're going to judge you whether they think your baby's like two or three or four or whatever.

I guess I just feel a bit more self conscious. I think we're so visible in any space because of the wheelchair and being a mum and I'm like, I mean, I don't think it's ever happened yet that I've been in a space where there's another wheelchair user who's also a parent. Like, I'd love 

[01:00:18] Emma Pickett: that. I feel like we should have a party and get together.

Gosh, so you have literally never breastfed alongside another parent who was feeding? 

[01:00:27] Sarah Perry: But I have a really good friend who's, um, who's baby uses a wheelchair and we spend loads of time together. Um, and that's been like a really beautiful relationship and, you know, we've had different but similar overlapping challenges the whole way through.

Um, and, uh, the, the, the babies is similar, like a month younger, a month older than Zangie. And, you know, it's been like really precious to have that relationship, I think. Um, but no, like, you, you know. And, and people don't handle it very well, like, you know, they're, they're often visibly shocked, visibly uncomfortable, like, you know, say awkward things and, you know, whatever, like everyone's a person.

I don't, I don't like write anyone off or think that's, you know. Any individual is an issue because of that. We live in a society where people just don't understand it and there's not, there's not very much literacy around, you know, your average, uh, little one, your average, say, four year old probably can name like digger, truck, combine harvester, um, motorbike.

bike, you know, boat, but they may not have the word wheelchair. And I think like that, that is a real issue. And yeah, so I think anyway, we're in, we're in a space that often we're in environments, but I can't join in with everything. So you're visible where like, we maybe need a little bit of extra help. So you're visible because you've had to ask, Oh, could you put the ramp down or could you move this thing?

Um, where a child's pointing, going, Oh, what's that mommy? And the mom's going, Oh, well, uh, Oh, um, yes. Well, it's, uh, do you know what I mean? And struggling with the word. 

[01:02:04] Emma Pickett: Yeah. The mom trying to be kind. Cause maybe I can just that world of, we don't want to draw attention to you, but also we're feeling awkward because the child's asking and, and what, and if someone is in that moment, what would you love them to say?

What would you love the parent to say? And if the child's going, Oh, look, mommy, look at that lady. What would you love the mom to say? 

[01:02:22] Sarah Perry: Oh, it's a wheelchair. People use them 

[01:02:23] Emma Pickett: to help them 

[01:02:23] Sarah Perry: get around. Hey, look, aren't her 

[01:02:25] Emma Pickett: shoes 

[01:02:26] Sarah Perry: cool? 

[01:02:26] Emma Pickett: Cool. I bet they're, I bet your shoes are cool. I can tell your shoes would be cool.

Um, so you're a peer supporter and obviously that means the groups where you're supporting are wheelchair accessible. Have, have you come across breastfeeding spaces and new parent support spaces that haven't been accessible? Oh yeah. Hundreds of them. Like 

[01:02:41] Sarah Perry: I would say the vast majority, but what I will say, I love So much about our breastfeeding group is not only is it wheelchair accessible, but the disabled toilet has a changing height, changing mat at wheelchair height, which I love so much because obviously, as we all know, and all parents are super frustrated by the fact that like changing mats often in the same space as the disabled toilets on the bus, the pram space is the same place as the wheelchair space on the train.

There's a wheelchair space that you might be able to put your pram in. As long as there's no wheelchair user, we're pitted against each other. Constantly. It's rubbish for everyone. But what I will say is that as a wheelchair user, you go into the disabled loo and you're like, cool, I'll go for a wee as a disabled person in the disabled loo and then I'll use the changing mat.

Oh, but the changing mat's not Yes, 

[01:03:24] Emma Pickett: a metre above where I can reach. Yeah, that's a bloody good point. The changing mat is always in that room. So it's rubbed in your face every single time you go to the loo that, of course, you don't have a baby and you do not need to change your baby. Yeah. 

[01:03:35] Sarah Perry: And I can stand, so I, I can change my baby in a, in that situation.

Not all wheelchair users would be able to, and it's not always comfortable or particularly safe for me to either, depending on how things are for me, um, in a given week. Um, but anyway, this, this place where we do our, our peer support there, the, the changing mat is at wheelchair height and it's so delightful.

[01:03:56] Emma Pickett: Yeah. Yeah. And that should be just normal and boring and something not even to comment on. So if someone's running a breastfeeding support group. We often think about, oh, is it pram accessible? Is it pram accessible? But we don't always think, uh, you know, wheelchair accessible, which presumably might mean a wider door, is going to mean ramps, is going to mean possibly a lift.

And I think lots of people think, oh, well, we never really had anybody in a wheelchair, so we didn't even, you know, we didn't think about it. Well, they probably didn't come. It's a bit chicken and egg, isn't it? That's why you didn't have anybody in a wheelchair. And if somebody is having a conversation, with a parent about their, you know, their feeding journey.

I mean, it goes without saying, and you've touched on it many times. People use wheelchairs for so many different reasons and with such a range of conditions, and you shouldn't make assumptions about arm ability or wrists or hands or anything. And you've just got to, and not feeling embarrassed about asking the questions directly, just saying, what do you need from me?

Tell me what you can do. Tell me what you'd like from me in this conversation. And have you found any literature online about feeding in a wheelchair that's been helpful? Are there any resources out there or is it too difficult to generalise because of the variety of issues? I haven't found any and I have looked.

I mean, maybe 

[01:05:08] Sarah Perry: I've not, there is stuff and I haven't found it, but there's certainly not a wealth of stuff. And I think, um, yeah, I think that it's It's a shame, I think. It's a real shame. There are practical questions, aren't there, like, um, that you could ask, like, uh, are you, like, have you found positions that are comfortable to feed in your chair?

You know, like, um, I guess that's an obvious one. I think also as peer supporters. Asking open ended questions about well being is important, right? Like, you know that, I know lots of people are feeling a bit self conscious in these early days, like, how is that for you? Does, does kind of being visibly disabled make that harder?

Like, I don't, I don't think that people should be scared to ask that, because it's not, there's no disabled person who isn't going to have, that thought isn't going to have crossed their mind. And they might be like, oh, no, actually, it just doesn't bother me. But they're not going to be like, sad that you asked.

Do you know what I mean? If anything, I feel like. It's a way of acknowledging someone's complex humanity, isn't it? To like, it's okay to ask, like, how has that been? 

[01:06:11] Emma Pickett: Like? Um, I think that's such an important message because I think people are kind of, they feel self-conscious about asking. Yeah. I think, I think maybe partly because we come from a world where we don't, we think drawing attention to difference is, is the wrong thing to do and is uncomfortable and we should sort of, you know, that all cliche about, oh, I don't see disability, or I don't see color, or, you know, that's, that's not helpful.

And, you know, maybe conversations around sleep as well, as you say, there may be people who are wheelchair users for whom sleep is more important and, and, you know, talking about nighttime parenting is more important and just asking the questions and not being embarrassed to ask the questions and a disabled person is quite capable of saying, nah, not, not relevant for me, but thanks for trying.

Let's move on to the next one. Um, and just, yeah. You know, all good peer supporters should be able to individualize their conversations with parents and understand that every parent's situation is different, whether they're in a wheelchair or not sitting in a wheelchair. 

[01:07:05] Sarah Perry: And do you know what also, like, I think what's really interesting is that birth can be a disabling experience.

You know, there are people who will have a birth, have a birth experience, that means that they're temporarily or long term disabled because of it. And I've, I've met people in that situation, you know, and, um, it's, it's one of those times where like, we do need to be literate around disability because, you know, sometimes people can't walk more than a few steps after they've given birth.

Maybe they can't walk at all. Maybe they're not sure if they will, you know, like that. I don't think that that's. I mean, obviously it's not, you know, you hope it's not, you know what I'm saying? Like it happens. It is a thing. And I think if we're scared of, of kind of thinking broadly about how mobility and breastfeeding might interact with each other and how, you know, if you, if you aren't.

If you don't have mobility, you know, I, I had to get out the house because I had to go to this infant feeding team appointment that, that was at my local breastfeeding group. There is no way I would have gone if that hadn't happened. Like no way, absolutely no way. I wasn't ready to leave the house in my wheelchair.

My partner was back at work. I certainly wasn't ready to do it on my own. I was terrified. I was so scared of being out in the chair with him on my own. I felt so vulnerable. And I think like people's limited mobility. Because of birth or otherwise can be a reason that people get extremely isolated as well.

So thinking about all those things, you know, it's I've been in spaces where people have been asked to leave their prams in the car, for example. Well, you might not have a car, but also lots of people in those early days are using their pram for mobility. You're using your pram like you would a rollator or a walker because you need to lean on something.

No, I think we've all just got to think imaginatively about bodies, that there might be loads of things going on that we can't see, and that, and that, like, that is just something to, like, be okay with. Do you know what I mean? 

[01:09:14] Emma Pickett: Yeah, that's a really helpful way of summarising it. Thank you. Right, I realise we've gone, gone over our hour and we might lose some people, gosh don't say sorry, blimey, that's the last thing you should be saying.

Um, I could talk to you for ages more. Um, let's just finish with me asking about your plans for Zanki's breastfeeding. Are you going to go for child led? Are you hoping to bring, wind things up at a certain point? Is everything working for you right now so you need to make changes? Cause you probably know that I like talking about the ending of breastfeeding.

What are you thinking will happen in the next few months? 

[01:09:43] Sarah Perry: I wish I knew, but you know what? I actually don't mind that I don't. I feel like I finally re entered my let's see what happens era. I feel like, I don't know, like right now it's fine. Will there be a point where I would like to kindly and carefully encourage the end until it.

comes to a slow, if, if, if I do that, we're going to be, we're going to be like super loving and caring about it. You know what I mean? And it will happen slowly and it will happen with loads of open dialogue and, and we'll, we'll get there in a way that feels okay for both of us. I can see that that might be possible, but it's not on the horizon.

Like, um, I don't know how I would feel. You know, at three, at four, at five, I think, um, you know, my, my body is struggling a bit. I am sore. I find, you know, lifting is so challenging. There are like physical aspects of breastfeeding right now, which are getting harder and will only get harder the bigger he gets.

Um, and there might come a point where. That isn't going to work for my body anymore. And I think that he may also, you know, tail off and stop that. That happens too, right? So let's, let's just see, um, let's just see what happens and make decisions as and when we need to. 

[01:10:58] Emma Pickett: I hope that's sensible. That's very sensible.

You've slightly, you've re engaged with chill a little bit and, and just letting us, yeah, to see what happens. And as you say, respond to your body when it feels right to do so. That sounds very wise. Thank you so much for your time today, Sarah. I'm incredibly grateful. And we will watch this space when it comes to your next novel and your future writing.

And I look, I'm looking out for that book about short stories on breastfeeding. Because that sounds like it would be very valuable, um, and yeah, I'll put your Instagram in the show notes. I know you're not a massive Instagram person, but I presume when the new books come out they will at least be mentioned on Instagram and people can connect to you through there.

And yeah, and anyone who runs a breastfeeding group, please just be a little bit more imaginative as you say. Don't make assumptions. Even the person that, that looks externally like they don't need mobility support, as you say, could be using their pram in a way you don't realize and just, just take your time before you make assumptions about anybody.

Yeah. Good advice. Thanks Sarah. I'm sure they will though. They do. Breastfeeding supports. Good people man. Yeah, definitely. Good way of finishing. Thank you, Sarah.

Thank you for joining me today You can find me on instagram at Emma pickett IBCLC and on twitter at makes milk It would be lovely if you subscribed because that helps other people to know I exist and leaving a review would be great as well Get in touch if you would like to join me to share your feeding or weaning journey, or if you have any ideas for topics to include in the podcast.

This podcast is produced by the lovely Emily Crosby Media.