Makes Milk with Emma Pickett
Emma Pickett has been a Board Certified Lactation Consultant since 2011. As an author (of 4 books), trainer, volunteer and breastfeeding counsellor, she has supported thousands of families to reach their infant feeding goals.
Breastfeeding/ chest feeding may be natural, but it isn't always easy for everyone. Hearing about other parent's experiences and getting information from lactation-obsessed experts can help.
Makes Milk with Emma Pickett
Weaning a neurodivergent child - Eleanor’s story
Are there additional challenges to weaning a neurodivergent child? What strategies can we employ to wean with care and kindness when neurodivergence is involved? In the next two episodes, I’m sharing two different perspectives, from Eleanor and Faith.
In this episode, I speak to Eleanor about weaning her first child, Anna. Both Eleanor and Anna have recently been diagnosed with autism. We discuss the prevalence of neurodivergence in the breastfeeding supporter world, the similarities and differences between weaning her neurodivergent and neurotypical children, and Eleanor shares some resources that can be of help to parents and supporters.
Find out more about breastfeeding and chest feeding older babies and children in my book Supporting Breastfeeding Past the First Six Months and Beyond: A Guide for Professionals and Parents
Follow me on Twitter @MakesMilk and on Instagram @emmapickettibclc or find out more on my website www.emmapickettbreastfeedingsupport.com
Resources mentioned in this episode -
Eleanor Campbell is @Eleanor.ibclc on Instagram and her website is www.eleanor-campbell-breastfeeding.com
@DrAimeeGrant on Twitter
Reframing Autism | Celebrating & nurturing Autistic identity
This podcast is presented by Emma Pickett IBCLC, and produced by Emily Crosby Media.
Hi. 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 to join me for conversations on how breastfeeding is amazing. And also, sometimes really, really hard, will 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 today, I'm really pleased to be joined by Eleanor Campbell. Eleanor is somebody who I know in real life a little bit as well, we used to be on the central committee together for the Association of Breastfeeding Mothers. And Eleanor has now taken over as Chair of the Association of Breastfeeding Mothers. So she wears lots of different hats. She's not here today with her chair hat on, or her lactation consultant hat on necessarily, she's also an IBCLC. She's here with her parent hat on talking about her experiences of being a parent to a neurodivergent child, because we're talking in this episode about weaning a neurodivergent child from breastfeeding. And mindful of the fact that for some parents said is particularly challenging, and can be a real barrier to giving yourself permission to end breastfeeding and to know how to go about supporting your child through that weaning process. So that's the plan for today. And thank you very much Eleanor, for for joining me on this episode.
Eleanor Campbell:Lovely to be here.
Emma Pickett:Let's start by talking a little bit about your family. Tell me a little bit about who you've got and what their story is.
Eleanor Campbell:So my neurodivergent child is Anna, who is now nearly 11. And a lot of what I talk about when I think about how that presented when she was a baby and a toddler and young is obviously in hindsight, because when you're feeding six month old, one year old, two year old, you're not necessarily going to have any sort of diagnosis. So you might just have a child in front of you, who is presenting quite differently to what you were expecting. And it's also with the hindsight of knowing that I then had to further children who were not your charity. So that gave me another different frame of reference. So I think it's just something that anybody who, who's going through that for the first time will be experiencing that quite differently to with my knowledge of where we are. And with all the history that has followed through the now makes perfect sense. That didn't necessarily make a lot of sense at the time. So it's very easy for me now to say, this is what happened, and this is why, at the time didn't make a lot of sense at all. So I think if I was a parent, hearing someone at this stage, I'd be like, that all makes so much sense. And this makes no sense whatsoever to me. And it's also that I, since Anna started on the pathway towards being diagonals, I spent a lot of time going, that's completely normal. Everybody feels like that and ended up with a diagnosis of my own, through that process.
Emma Pickett:Okay.
Eleanor Campbell:In that classic kind of, you know, adults, particularly females, were not diagnosed. And now, you know, there's much more of an awareness of what that can look like. So I spent a lot of time explaining away what was happening with Anna as that's completely normal, I'm exactly the same. When in fact, that was something that for her was about you that diverse aspect of how he was that I didn't understand wasn't what everybody in the world experienced, because it was also my normal.
Emma Pickett:Okay, that's really interesting. So, so that obviously has affected your approach to weaning and your approach to ending breastfeeding as well. And, and for all of your children, not not just your daughter, and how old were you when you were diagnosed? It was this year. So I'm brand new officially. Obviously doesn't change anything about your home and who and what I am. But it makes a lot of sense of things that, you know, in the past, why was I finding particular things very challenging, but obviously, you know, in my head obviously I couldn't be someone who, who was neurodivergent because I have empathy and I can do social situations and a lot of these things that you can do but they're very very effortful. When you're autistic. I do I do find and correct me if this is wrong, I do, I think there are quite a lot of autistic breastfeeding supporters. I find that when people become feeding parents, they quite often go down a rabbit hole of really wanting to know everything about it and autistic people are brilliant at that and really researching and becoming experts and and these are the people I think who will often become peer supporters and become breastfeeding counsellors and become lactation consultants just because they're so good at that deep dive. My gut feeling is we've got proportionally more autistic breastfeeding supporters than we have autistic people in the general population. I mean, is that hunch what you think too?
Eleanor Campbell:I think that's absolutely true, actually. And, you know, we recently did a diversity survey for the ABN. And that was exactly true, that we had a much higher number of people who identify as being neurodivergent you would expect for the number of people responding. And I think it's exactly that that sense of, of hyper focus and your very strong interests that can maintain for a long time. And yeah, there's definitely, I think, an over representation of people who, who are not neurotypical in the breastfeeding supporter world as well. And also, I think, because those people are likely to be able to have that sense of you know, if this is a challenge for you. It's not fair. You know, a lot of people who are autistic have a big sense of justice, and things being you know, if that's right, for someone, it should be available for everyone. So there's a big sense of, Well, you know, that's not right, we need to fix that. So we're the ones going around, metaphorically throwing the starfish back into the sea, until we can get the systemic change happening.
Emma Pickett:Yeah, well, we definitely need the starfish throwers, thank you for being a starfish thrower. Tell me a little bit about your, your breastfeeding experience with your daughter.
Eleanor Campbell:So when Anna was a baby, we had quite a difficult birth, she was in special care for the first 18 hours. So I didn't meet her until I was, you know, able to mobilise after the emergency section and things like that. So it wasn't the start, but I'd envisaged. And she was given formula before I was conscious. And my plan had always been, of course, I'm gonna breastfeed and blah, blah, blah. And I think, for all new parents, you can't anticipate what it's going to be late until actually happens to you. Because everybody can tell you, it's gonna be super intense, and you're gonna be tired, and it's gonna be draining and whatever. But that doesn't feel like the reality of how that actually is, you know, so you can hear and you can understand intellectually, but until you're actually there and you feel it. And then you say, why didn't nobody tell me and people said, couldn't conceive, they're actually telling the truth. So I think I found it all incredibly intense, and very, very draining. And Anna was on very, needy child. So she was a child who would not go in a buggy ever. She hated it. She would scream and scream, and scream and scream. Ands she was also a child who needed fed all the time. And I can remember, you know, much later down the line when she was like, 10 months old, or something like that. And someone saying, you know, I'd read something about, you know, when you're starting solids about how many feeds you'd have in a day and things. And I thought, I'm just going to count how many feeds she'd have in the day. And we got to about two o'clock in the afternoon, and I was on 23. So I gave up. And I remember thinking, Oh, well, that's just what it's like, because at that time I just kind of leaned into it and go through, this is what we do. And that's fine. And then since realised, with hindsight, that's not typical experience, either. Because she was a child who I thought I was a champion breastfeeder because we'd go through the health visitor, and we'd have her weighed and she'd put on a pound since the last week. And I was like, well, that's marvellous, obviously, I'm doing the right thing. And she was the fattest child in the world. And in hindsight, that's because she has no appetite control, as he still doesn't. You know, she doesn't recognise when she's full. But she enjoys the sensory feeling of eating and feeling full. So she just kept doing it. Which in some ways was very gratifying. You know, as a new mom at the time, because I'm, it was concrete evidence, I was doing something really, right. You know, this child was getting really big and you had all the overalls and whatever. The health visitor made all these comments about, you know, you have gold top milk and things like that. Well actually she just feeds for about 72 hours in every 24. But, you know, that was that was part of how that played out for us. She was also like, we called her the magical stripping baby because she couldn't bear to be hot. So it was, you know, it'd be the dead of winter, I'd be meeting the NCT friends in a cafe or something like that. Their babies would be in snow suits in the prom having a snooze and maybe would be stripped to her vest screaming because she was too hot in this cafe. So there were all these kind of sensory things that, in hindsight, make perfect sense and have continued throughout her life. That just made it it was quite challenging from a point of view of parenting at that stage.
Emma Pickett:Yeah, yeah. Especially that first time parent where you're just really hyper aware of other people's judgments. And you know, the baby not wearing the coat gets the glance from someone else at the bus stop. And it's really hard, isn't it? So you're at 10 months, she started solids. She's still breastfeeding really frequently. Breastfeeding through the night as well? What were night times like around the age?
Eleanor Campbell:Yeah. Nighttimes were intense. Sshe would wake up running about every hour. And like lots of new parents, I kind of held out that it's all gonna be fine. You How old was Anna at this point? know, at six months, you'll start solids and then she'll sleep. And then it was a year when they get past this tooth, then they'll sleep and so on. And Anna's sleep just kind of got progressively worse and worse, actually. She took to solids really well, unless I tried to feed her from a spoon. I, again, coming to this blank had had taken the view that she was gonna have a mixture of finger foods and purees I'd lovingly made with expressed breast milk and frozen in ice cube trays, which all ended up in the bin, because she would not be fed from a spoon. And I kind of anticipated I'd have She was 10 months old. some control over that. And that it turns out, you can't spoon feed a baby who will not open her mouth or have her head facing towards you. So she loved solids. But we ended up baby led weaning by default, which I hadn't even heard of at that stage, because it was ten years ago, and I'm not sure many people were really very aware of that stage. Certainly your health visitors were not encouraging you to do that very much. So it was always kind of, you know, when she's eating more foods, and then it's kind of you know, maybe she's feeding too much during the night, and you're not feeding her enough during the day. And that's why she doesn't sleep well, which is why I never refused her feed during the day just on the off chance that that was the one that was going to make a difference to sleep. And she just wasn't a sleeper. And I didn't enjoy that. And again, in hindsight, it makes sense for me that I find it very difficult to regulate, when I haven't had enough sleep. And I would do things like I would, I would lose spatial awareness, walk into walls and fireplaces and things like that. And I would lose the ability to form sentences, which I now know is an artistic thing as well, losing your words. And we made a decision at the time which I'm kind of conflicted about now, but at the time, we felt like we had to sleep train, and it was the only thing anyone was telling us. And you know, we were promised to be very gentle and very wonderful. And we'd do sitting by the chair being in the room being present, not not feeding and not really picking up and things like that. And actually, that was something that my mum supported me a lot with, because I wasn't able to do it. So my mum sat by the chair and helped, and it wasn't
Emma Pickett:Okay.
Eleanor Campbell:And I think you know, the first night she particularly traumatic. cried for about 20 minutes. And the next night was about 10. And that was it. So it wasn't actually very traumatic. But I'm not sure that it was necessary, either. I don't know if it was the be all and end all that we had framed that to be in our heads. And I suspect that we could probably have done a bit more scaffolding around and slightly gentler techniques that would have had the same effect over a slightly longer period of time.
Emma Pickett:So that came from a place obviously of you really finding it tough. I mean, let's, let's be kind to Eleanor of 10 years ago and say, you know, it's very easy to say hey, look at all the research and sleep training is evil. But when you are walking into walls, and you can't finish sentences, you can see how you know, your mum wants to support you and help you to get to a better place.
Eleanor Campbell:Yeah, absolutely. And it was a decision that with the same knowledge, I would have made the same decision, you know, so I can't imagine being in that place again, and not doing the same thing. So the fact I did differently with my other children was from that experience and from other experiences, which I wouldn't have had. So I think it's with all things parenting, you've got to be kind to yourself, you've got to say that you're doing the best you can in the moment with the information you have at the time, and you can go back and you know, research might come out years later that you did the wrong thing. But if you didn't know it at the time, it's not really a lot of use to you. So that was where we were. And then actually, she turned into the best sleeping child in the world. So she would consistently do the kind of 13 hours overnight and then two and a half in the afternoon. So she's she's always been a child who needs her sleep to regulate herself, like her mom. So if she doesn't get enough sleep, heels, she finds it challenging during the day, you're more likely to get tears, she's more likely to just kind of shut down even now. That's a kind of inbuilt part of who she is. That that that need for lots of lots of sleep. And the other challenge that it had at the time was that she was very inflexible as a baby. So I had had visions of you can take this baby out to a restaurant you can park in a buggy. Why would you have to go to bed early? Why are all the people putting the children to bed at seven o'clock? And I quickly discovered that it was because the child that is in front of you if you try and keep her up like three quarters of an hour, you're not going to have a fun evening. And that I think socially was quite challenging because I think a lot of people expected you to just be more flexible. So you have inlaws who're saying we booked, we've booked it early, so you can still get home on time at half past six and you're thinking your bedtime is half past seven. This is not gonna go well. And again, I had had this vision of the baby who'll sleep anywhere you don't have to go home and reach out for naps and things like that, but she desperately needed that routine. And if we didn't have that in place, it was miserable for everybody. So although I'd kind of become this parent, I didn't have kind of any sense of in the sense that, you know, it's like, no, it's two o'clock, we really have to go back to the house now, because you're gonna need to sleep in her cot, and you're being that inflexible, why aren't you just letting the child sleep in their buggy? I don't know why you do that, you know, and that kind of thing that you do with parents when that's not the child you've had. But it was very much relayed by what she needed, rather than how I wanted to parent. So that was an adjustment as well, the sense that the parent you think you're going to be might not be the child your parent needs.
Emma Pickett:Yeah. Yeah, that's a good to hear phrasing it. So she turns one, and what's happening with her breastfeeding in the sort of second year of her life?
Eleanor Campbell:Yeah, so she still is a very frequent breastfeed her, you know, she eats lots of lovely foods, but she still probably breastfeed a good dozen times a day. Not at night. And one of the things that we did do during the kind of sleep training process was shift the order of bedtime, because we'd always done the whole if you do a bedtime routine, she'll definitely sleep well. Hollow laugh! So one of the things we did as part of that was moving the last breastfeed forward through the routine. So it started that, instead of being last thing at night, it was before she got her job, and then moved before the bath. And that was where it stayed.
Emma Pickett:And was she resistant to that? Did you have any periods of her being very distressed by that, or how did that go?
Eleanor Campbell:It was actually better than than we thought, because I think she was quite a child who, she wasn't verbal for a long time, but her kind of sense of language was always good. So she did Baby Signing, and she obviously understood things, and you could give her your instructions to go and get this thing, and then she obviously understood even though she wasn't speaking in return. So you know, we'd had a conversation about, you know, we're going to have milk after the bath. And, you know, and then, you know, doing the stories and everything else as normal. So I think that helped a lot, just making sure that before anything happened for two or three nights, we talked about soon we'll have milk after the bath. And really kind of trailer trailers, you know, if you're doing a social media campaign in advance, this is what's gonna happen in the future. So, you know,for that very first thing, I'm not sure it necessarily helped. But certainly going forward with other changes around feeding that we're going to introduce that kind of really, you know, trailing what you're going to do made a massive difference. We had one night feed, actually until she was about 18 months old. And that was one that I quite liked. And I quite enjoyed because it was very late, you know, five, half, five, six in the morning. And the reason I loved it was because you'd go back to sleep.
Emma Pickett:So you you'd move the bedtime feed and you weren't feeding directly to sleep anymore. And you'd be night weaned for a while. At what age had she night weaned?
Eleanor Campbell:So she night weaned around about 18 months. So that was about eight months after she'd done the kind of sleep training and was broadly sleeping well. And I've kept that feed in because it got me more sleep because she would go back to sleep in the morning and sleep for another couple of hours. Whereas if I hadn't set her back to sleep I'd have had to get up at half five. I didn't fancy that much. And I found it quite sustainable as well. Getting up once a night was absolutely fine.
Emma Pickett:So are you co sleeping at this point?
Eleanor Campbell:No, she was in her own cot in her own room.
Emma Pickett:Okay
Eleanor Campbell:Because she did not sleep well in a room with anyone else.
Emma Pickett:Okay
Eleanor Campbell:She didn't enjoy having me in the room with her. So she until she was about six months old, slept on a cot in my room. But I think was ready to move to her own room in the sense that she didn't enjoy snuggling at night very much. She wanted her own space, I think. So I would get up and go and feed her in the middle of the night and then come back to my bed.
Emma Pickett:Okay. And you were doing that once in the night, around 18 months. And then did you remove that feed? How did the night feed go?
Eleanor Campbell:That feed fell away by itself.
Emma Pickett:Okay
Eleanor Campbell:So it gradually became that it wasn't every night, so we'd be doing six nights a week. And it became five nights a week and four nights a week. And probably over a period about three months, it just stopped all by itself without any intervention from me. And I think it was just when she was able to sleep that little bit longer, you kind of wake up and it's kind of dawn and you look around once she was ready to just go back to sleep by yourself so that that was completely painless, thankfully.
Emma Pickett:Good. Luckily for you you're getting lovely sleep as well which is obviously really important for you which it sounds like you need to be able to cope with all the daytime feeding that was still happening.
Eleanor Campbell:Yeah, yep. So yeah, it was still a lot of the time feeding. There was a lot of carrying her around on a hip seat. So she wanted to be held almost all of the time. So I discovered that you could get these little things that looks like a bum bag with plastic in it. It forms a little shelf on your hip.
Emma Pickett:I remember it well, my currently a 19 year old was on one as well.
Eleanor Campbell:Yeah, yeah. Because that that kind of need to be, you're in contact all the time, was still quite intense. And in some ways still is to be honest, you know, like one of her regulating things is I lie on top of her, you know, squash her, you know. So that's still one of the things that she feels a really strong need for. And I think you know, that the big challenge was always finding space where I wasn't being touched, and space where there was there was no demand on me because I think knowing what I know now like my way of regulating is being in a room with nothing happening at all. And like playing some repetitive game on your phone like Candy Crush or Solitaire or Minesweeper or something like that. It's that kind of sorting out sort of thing. And I definitely found that when she was a toddler, I was doing that quite a lot, which gave me the guilt for not paying her complete attention at all times. But it definitely was something that you know, I'd be feeding her and she'd be doing her standing on one leg with one in the air and trying to get hand up your nose. And I'd be playing a game to distract myself from this.
Emma Pickett:Gosh, that's really interesting. So at the time you this is, you know, this isn't what good mothers do. You're meant to be looking lovingly into her eyes. But now you know more about yourself and and what you need to regulate, you are desperately trying to regulate this well, so heavy, heavy sensory experience was happening.
Eleanor Campbell:Yeah, yeah. And it's one of the things I would read things about people saying about, you know, how do you stop them nipple twiddling and things like that? And I get this gut reaction to the very thought of it, it's like, well, my child is never going to develop that habit, because the minute that happens, I will throw them across the room. So it's one of these things that I think I had a very low tolerance for the other stuff from quite an early stage. So you know, she did try her hand. And then the other cup of my bras had to be through it just, you know, there was there was no negotiation, negotiation happening. Because it was just unbearable. I didn't mind the gymnastics that was okay. Because actually, that was less intense. Because she wasn't on me as much. Because she's balancing on the floor with her bum in the air in a downward dog position or something like that. So that was actually much more manageable. And I think those are quite common techniques that people use when they're feeling a bit kind of touched out and overdone. Like, even with a tiny baby, you hear neurodivergent mothers, you're like having a baby on the cushion slightly away from them. So they're not being as touched, you know. So I think those are not uncommon kind of strategies, even though at the time it just felt like, you know, why are you not being more snuggly? Why not gazing lovingly, lovingly into their eyes? And at the time, I just put it down to the fact because I'm spending a lot of hours a day doing this. And I can I can do about two hours of loving gazing. But beyond that, you know, I'm kind of running out. But I think no, it makes sense in hindsight as a tool that I was using to kind of rebalance.
Emma Pickett:Yeah, yeah. When did she start to feed less frequently in the day? When did you, when was there a transition? Or did you need to just bring things to a close? Tell me about how things progressed, as she got older.
Eleanor Campbell:As she got older, it became more predictable. So we had lots and lots of routines. And because that's how I live my life, which obviously is a completely neurotypical way to be. And so I would always, you know on a Monday, we would do X, Y Z. On a Wednesday... and we do things in a very predictable order. And what that meant is there tended to be times that in and of themselves were feeding times, you know, so if we're in Sing and Sign, you can feed as much as you like, you know, if we're in Sainsbury's, that's not what you need. And I think that there were places and times that she learned were feeding times and places and times that weren't. So if we're in bed, it's a free for all, you know, if we're sitting on the couch, yeah, no problem. And I think I was very conscious, you know, as you got bigger, that I didn't want people seeing us breastfeeding, because I wasn't one of those moms. I was still very much in a headspace that, you know, it's a bit extreme feeding your two year old, you know, isn't it?
Emma Pickett:That's the tagline! Chair of Association of Breastfeeding Mothers says it's a bit strange to feed your two year old! Yeah, we're all allowed to feel that way. And at some point in our breastfeeding or chest feeding journeys, quite often, people go through phases of not always ticking all the boxes.
Eleanor Campbell:Absolutely.
Emma Pickett:It's very hard when you live in a society where we don't see it. And we feel like we have to be the, the trailblazer. Not everyone has the capacity to be to be that trailblazer and that is okay.
Eleanor Campbell:Yeah. And of course, at the time, I wasn't an IBCLC or the Chair of the Breast Feeding Mothers Association. I was just someone who had started a peer supporter course, in thinking that, you know, I still had a lot of preconceptions about what normal which was based on kind of British cultural values. You know, I didn't know anyone who'd ever fed a two year old. So as far as I was concerned, I was the only one doing it. And it was very much your part of the kind of social aspect of ABM that made me see that it wasn't just this, you know, article in Heat magazine about someone feeding till the child was 22 just for scandal purposes, you know, that actually it was completely normal. And you did some reading and discovered that yeah, there's a reason we call them milk teeth and they don't fall out till they're five. And I never had that feeling with my other two. Because I've normalised that within myself. And also, among the people who I was becoming more and more surrounded with as my dive into the breastfeeding world go deeper. So it was very much a rule when Anna was two that you only fed at home. Whereas with my others, it's like, do you know, if you need to feed you need to feed. You know? So that was our progression for us. And I think, probably for a lot of people, I don't think most people who start out breastfeeding now think oh, yeah, I'm definitely gonna breastfeed till the two. That's my that's my target point. I think for a lot of people, it's much more like, it's gonna be six months. And then they surprise themselves by feeding to 13 months or something like that. And I feel like if anybody had said to me at the beginning, so really, you need to aim for two, I'd have been like, you're a strange person. I'm not in a place like I can hear that, what are you even talking about? Because it wasn't how I conceive of it happening.
Emma Pickett:Yeah.
Eleanor Campbell:And it takes a bit of time to change my mind about these things. And, you know, I need to I need a drip drip drip for quite a long time about these kind of fixed ideas that come from your upbringing and things like that.
Emma Pickett:Yeah.
Eleanor Campbell:And that was with a mother who breastfed her children, you know, but you know, that kind of 80s upbringing wasn't necessarily conducive to thinking about long term breastfeeding being normal.
Emma Pickett:Yeah, no, that's very, very familiar to me as well. So the idea about location boundaries, and breastfeeding happens at home and breastfeeding happens, this place and not that place, suited both of you, it suited what you needed. And it suited what Anna needed as well, you both had that solid foundation of knowing what breastfeeding was and what it wasn't. And how did things progress from there?
Eleanor Campbell:I think some of them would naturally naturally just fell away. Because as she got older and more interested in other stuff, other things were more interesting than having a breastfeed during the day. In that way that I think toddlers do because they want to walk away from you and go and look at the conkers. And that's just much more interesting than mummy's boobs in that moment, you know, and so that that kind of, you know, that did naturally fall away. But it was very predictable that if she came into my bed in the morning, there would be breastfeeding, that was definitely going to happen. And if you tried to not for whatever reason, because it's like, actually, you know, I've got 10 minutes to go out the door, it was going to take me much longer to get out the door, then just take that five minutes for that short feed. And because she would just have a very huge reaction to it, to the No, in the context of where she was allowed to feed on her head, than you would otherwise. And even if in my head, there were reasons why we're not doing this. And it was another situation where I learned that it was easier to go with the need is more time efficient than to try and, you know, just move aside, move on, carry on with my agenda for what I thought should be happening. And the same was true, you know, if we sat down in the afternoon to watch, there was a lot of Mr. Tumble in our lives, she watched what seemed like all the episodes and didn't really want to watch anything else. So we kind of got a lot of him on repeat which you know, we'd been encouraged to do because she was nonverbal. So it was teaching Makaton and I could justify it in my head. So that was fine. But it was, that was her programme that she watched. And if we were sitting down on the couch that was feeding time as well. And what that all meant was later on, I had a bit more control over when I chose to feed because I could choose not to sit down on the couch. So if I didn't feel like that was a goer in that moment, or even if I was just in a rush or whatever, I could just be in the kitchen. And we didn't feed in the kitchen. So that was okay.
Emma Pickett:So she didn't have the, not because she wasn't nonverbal, it wasn't that she wasn't able to ask to go to the couch? In her mind, she didn't see it as a feeding time because you weren't on the couch. Is that, is that what was going on?
Eleanor Campbell:Yeah, yeah. So very much my sitting down was a trigger for her to feed as opposed to her thinking I would like a feed I'm going to find mummy. And you know, because she could do she could sign in sentences. So she could say things like you know, run away fast, or I want something after that, you know, so she wasn't you know, she didn't have expressive mind words verbally. And we called in the speech and language therapist and they said well you know she's got the receptive language, she knows you can sign, so we know it's not a brain development thing. She'll get around to it eventually. So we had that level of communication but she never asked you know it was always kind of yeah, I would trigger it when it was time and could distract her by your simply continuing to not be in bed. So you know if I needed to get out the house quickly, if I got up out of bed and dressed, she wouldn't wake up and think it's time for breastfeed because mummy's not in bed.
Emma Pickett:Okay.
Eleanor Campbell:So those kind of fixed ideas that she had meant actually I had quite a lot of leeway compared to a lot of parents in that scenario whose children have more of their own agenda. And so that was quite different for us, I think. Because I think the kind of the idea you always read about this, don't offer don't refuse.
Emma Pickett:I was just thinking that does not work for you. No.
Eleanor Campbell:I don't know who it does work for to be honest. You know, it's because you're, they're gonna ask, you know, in some contexts, and most people I know, with, you know, two year olds or older, aren't going around randomly saying, do you fancy a breastfeed, you know? There is no offering involved, it tends to be very child led. So yes, there were definitely times she'd try and call me over to couch. That was definitely a thing. But I think the reactions from her were always when she thought something was going to happen, and then it didn't. So if I sat on the couch and said, No, that would be much harder than if I hadn't sat on the couch. So that was never actually agreed in that sense.
Emma Pickett:Yeah.
Eleanor Campbell:So that that was that was how that would that would work out for us. And over time, she would just, it was just less of an issue for her. It was just something she asked for less and less. And I don't know exactly when she had her last breastfeed. It was somewhere around two and a half. But I don't know. Because there were the months leading up to that were fewer and fewer feeds. And you know, the feeds were, you know, suddenly, you'd have a day of three feeds. And then there'd be no feeds for four days.
Emma Pickett:And this isn't because you're, you're not busy in the kitchen, avoiding being on the sofa? So this wasn't, this wasn't parent led weaning. This was just it just naturally happened?
Eleanor Campbell:Yep. This was just something that happened. Yeah.
Emma Pickett:So there were days when you'd sit on the sofa and she just wouldn't ask or wouldn't indicate she wanted to feed? I guess it's maybe people listening to this going well, how did you get to that place? What was going on? Why did she not want to feed on those days? Did she have other things that she would physically do? Did you have other kinds of regulation tools that she was choosing instead? What was going on for her when she was sitting on a sofa next to you, and not asking for a feed what was happening instead?
Eleanor Campbell:So Anna has always been very story oriented. She loves a book. And I think it got to the point where she'd rather hear a story. So when we're sitting on the couch with a book, she would rather do that. And I think I definitely used that as a tool. And because I was feeling like, you know, I was kind of getting to the point I was I was happy for her to let that fall away. And if I was reading a book to her, she wasn't asking, and I felt like that was such a good thing for her language. And to try you know, keep engaging with that, that that line was happening. So I felt like that was a really good thing to do. And I think she has always had this capacity to get really lost in stories. So I think it was a motivational thing for her that, you know, mum wouldn't be reading to me if I'm having milk.
Emma Pickett:So she wasn't trying to get you to breastfeed while reading a book, which is what's, what some children attempt? She wanted to really enjoy those illustrations properly and not, not half look at them.
Eleanor Campbell:Yeah, absolutely. And, you know, she, when she focuses on something, she focuses on something. She's not a multitasking sort of a person. So I think, you know, from her perspective, why would I be drinking milk and reading books at the same time, because they're different activities? Doesn't make any sense. That sense for me of not even necessarily choosing not to feed but feeling like I had the option to choose not to feed made it easier to continue feeding. There's quite a circular sentence, I'm aware. But it was that same sort of you know, it's kind of like knowing you've got an emergency something in the kitchen, you know that you're not necessarily going to use it but knowing it's there is reassuring. And I think, had I not had that sense of I don't have to do every feed, I think I would have had to take a harder line earlier because of it being too much. So I think it kept us going longer.
Emma Pickett:And that morning feed that sounded like it was particularly emotionally important to her. How did that end up fading?
Eleanor Campbell:So that one, she started at nursery when she was about two and a half. And so there would be some mornings when her dad would get up and give her her breakfast and drop her off at nursery. And I would have a long lie because I wasn't working outside the home at the time that he would do nursery drop off. And she was always perfectly happy with that. So on a morning when daddy got her up, perfectly happy that breastfeeding wasn't involved. On mornings when I got her up, that was that was when breastfeeding was involved. And so I think a greater proportion of her mornings started happening in that way. And so he always used to do the weekends so I could catch up on a couple of hours. While he was at work during the week, obviously I got out of my bed. And then when nursery happened that then meant there'd be Thursday, Friday, Saturday, Sunday, where it didn't. I think that that natural longer break was habit forming. So it's that kind of, you know, if we do this for four days regularly, we stopped thinking about it so much on other days.
Emma Pickett:Yeah, I think that word habit is really key, isn't it? Because I think, I think for some children, you know, daddy getting me up for breakfast is not on the cards, not not not acceptable. Absolutely not. Okay, they will scream the house down until Mummy gets out of bed. But it sounds as though and correct me if I'm wrong, for Anna, this was a daddy morning. This is what happens on Daddy mornings, it wouldn't occur to her to look outside that box. Because in her mind, she had those habits of that Daddy Day, sort of in her head.
Eleanor Campbell:And those habits predated nursery by years, you know, so you're even when she was very tiny. And we're still, you know, in the depths of absolutely no sleep and things like that, you know, Daddy got up some mornings at the weekend, or even if on the days when he wasn't going to work particularly sharp. You know, when she woke up, he'd take her for a couple of hours. So I could grab a couple more hours sleep until he had to leave. So from very early on, during this time, when you get up and you spend time with daddy, that isn't mummy time. And mummy comes later and appears on the scene. So that had been something that had been in place for years. And wasn't a new thing that we were trying to introduce to manage it.
Emma Pickett:Okay, that's really helpful. I guess there was some people hearing this thinking, what do you mean, you didn't know when the last feed was that? That's I think that's bananas. How does that happen? But just it's so gradual, one day, then three days and then four days?
Eleanor Campbell:Yeah, I don't know for my others, either. I can tell you I kind of ballpark was like two and a half ish. On my last one, we might have stopped but we might not. It's not, you know, it's been a week, but who knows? You know?
Emma Pickett:Oh, right now, right? You're right in the middle of it!
Eleanor Campbell:Yeah.
Emma Pickett:Okay. So with number one with Anna, you didn't have any particular physical or emotional impacts of ending breastfeeding? That sounds like it was all wound down gradually enough that you weren't particularly impacted? And, and now you're right in the middle of weaning the last one? How long has it been since your last feed?
Eleanor Campbell:It's been about a week.
Emma Pickett:Okay. And how are you feeling?
Eleanor Campbell:We've been going kind of three or four day periods for a few months now. Where, you know, she's just kind of distracted. And having come full circle from my first child who I felt it'd be really odd to breastfeed to two, I felt like I wouldn't have my proper IBCLC chops unless I got to at least three with this one. So that was actually, you know, an element of parent led offering, you know, which, you know, is absolutely the opposite direction, this time. And I feel like I'm happy for her to take her time. So I don't feel like the fact it's been six days means that has to be done. If she wants to come back, that's fine. I'm sure she'll certainly asked me if he wants to and probably will if she catches me getting in the shower, one day she will ask or something like that.
Emma Pickett:And has breastfeeding post your own diagnosis changed how you view yourself in that breastfeeding relationship, if you've given yourself different permissions, has it done anything different?
Eleanor Campbell:I think it's very different in terms of what I find acceptable in myself, and what I'll beat myself up over. So I think it's, it's different from the point of view that exactly what you said earlier about, I need to be a good mom, why am I? You know, I'm beating myself and saying, Actually, I will be a better mom, if I take the time to make sure I'm regulated. You know, I won't be ranty, shouty, grumpy Mum, if I'm feeling calm. And in a place where I'm on a solid baseline. If I'm on shifting sands, I can't possibly give them stability. So I definitely give myself more permission to say, do you know what you're all screaming out, and the other
Emma Pickett:Yeah. three children asking me things at the same time. And it's just not working right now. So watch TV, I'm going to hide, I'm going to hide for 20 minutes. And when I come back, I will be properly present andable to manage whatever you will need. So I definitely give myself permission with that more. And I think you have to when you have children, and you're trying to balance their different needs. And I think this is common to everyone, not just people who are neurodivergent, that sense of being pulled in different directions a lot. But, you know, all seven year olds don't have a volume control. Three year olds don't have a volume control. My 11 year old, doesn't have a volume control, and are very persistent. So if you're
Eleanor Campbell:So she hears that she's got dyslexia and answering a question from one of them, and another one asks you a question, and you don't answer instantly, they'll just ask it again. And that can be really overloading and really overwhelming. And I think when that happens, I feel a physical reaction in myself withdrawing from them. It's like I'm trying to back away in a way that it feels like there's a physical threat or something. There's something physical that's that's clamping in on you and pressing in from the outside, and that you just have to remove yourself from so you can kind of kind of feel that grounded. So I think I definitely give myself a lot more permission to, to centre myself in order to be a better parent. And I think it's the sense that there's a reason why things are low level uncomfortable a lot of the time. You know, if it's the week when everybody starts back at school and school are sending you 17 different emails, changing things, and saying this happens that day and you don't know what's happening for the rest of the week, it's okay to feel uncomfortable with that and not just feel like it's literally, I'll roll with it, I'll turn up on Wednesday morning, I've not got anything in the diary, it's fine. But just it's okay to feel like that makes you feel uncomfortable. And you can acknowledge that that's how you feel about that. And you don't need to have that internal narrative of blaming yourself for not being better at dealing with things. And I think it very much informs my interactions with Anna because she needs to see me giving myself permission to do the things I need to do to self regulate. Because one of the reasons we kind of sought out a diagnosis for Anna was because there have been a lot of years of talking about speech and language difficulties, executive function difficulties, sensory processing difficulties, a lot of descriptions of what was happening in her life without any kind of causation, or explanation. And in the lack of any sort of explanation, she'd come up with her own narrative that she was stupid, which was, you know, she's an intelligent child. And if we're not giving her an explanation for these things, she will come up with one herself. And it wasn't helpful. dyspraxia and this disorder and this difficulty, and she just thinks, Well, I'm just not as good as the other girls. So for us, that was the trigger to sa, Okay, well, we need to talk about the overarching theme here, as opposed to just the individual difficulties that she has. And I don't think she necessarily likes the idea. She doesn't see it as an inner autism as a superpower, she very much thinks of it as something that prevents her from doing things that the moment
Emma Pickett:When you were diagnosed, how did she find that? How did she take that?
Eleanor Campbell:I think it helps. Because she has a prewritten version in her head of me. And that isn't as someone who is stupid or incapable or whatever. So I think it helps, because, and that was actually why I went down the road, because I thought that you will need to see that this is not something that has to be disabling. It's not something that has to mean things are off the table. And I think that was how she perceived it at the time. And there'd been an assembly in school that was aimed at raising awareness of autism. And there had been a lot of description, there have been some of the kinds of things about you know, people with autism, they were, they were using that terminology, you are very creative. People with dyslexia are better at drawing or whatever, you know, like all of these things about, you know, that actually felt more like putting them into boxes than anything else. But also a lot of discussion about things that you might find hard. So her perception was either you have, you know, one very good thing that you can do very well. And other stuff will just be more difficult forevermore. So I felt that was something that we need to counterbalance. And that kind of made me think, Okay, well, you having done all this reading around you, and recognise myself and a lot of that I maybe need to kind of bite the bullet and, you know, not face up to anything, but I didn't necessarily think a diagnosis would add anything to my life in a formal sense. Because I knew I was becoming aware that, you know, there's all these things like imagining this way. And that's, that's part of our arm, and that's fine. But I think in terms of sharing with her that was really important.
Emma Pickett:Yeah,
Eleanor Campbell:because of the narrative that she'd developed.
Emma Pickett:Yeah, I can see how that will be really powerful. I just want to ask you a question about one particular time in your parenting. I'm just trying to imagine what life was like when you had a newborn, number two, newborn, and Anna was four ish. I'm trying to do my maths...
Eleanor Campbell:she's about three and a half
Emma Pickett:so three and a half and a newborn. And you're someone who desperately needs your sleep, and you're dealing with being potentially sometimes feeling overwhelmed. What was life like for you in that moment? And were there any strategies that sort of helped you cope with that phase?
Eleanor Campbell:Yeah, so barring the COVID lockdown, where we had a newborn and two homeschooling, that was actually the most difficult time. So I think because Anna was very unregulated, and I hadn't recognised the strategies that would help her and from about three to four, and then there was another baby on the scene. So there was a lot of change and a lot of you know, the things we would usually do had had gone out the window and a lot of having to be reactive. And that was when we kind of discovered scaffolding, and you know, not all right, we're ready to leave the house, discovered the, you know, the painful way that that doesn't work. And that was definitely the, the time that I found the most challenging. Because I feel like right, I've finally got everything ready to go, I've got the bag packed. And that was something I found very hard, because I felt the need to plan everything and have everything I possibly needed in the changing bag to make sure nothing went wrong. And you know, when my husband left at the weekend with a nappy and a packet of wipes from the bag, I'd say, but you don't have all the things you need. And he's like, what's gonna happen, you know? So I definitely had that kind of sense of needing to be ready for facing the world. And that combined with, you know, a baby who might do a poo at a random moment, when you're ready to leave and saying, you know, you can leave when that episode of Octonauts has finished, meant that there was a lot of times when I just presented something to Anna, saying right we're going now, or it's time to do x, that led to her absolutely losing it. And I didn't deal with it well, because I didn't understand why it was happening. So I can remember, you know, pulling her out from under the sofa by the ankles to try and get her clothes back on again, because she'd have taken them off again, and things like that. So there was a lot of trial and error in those years of realising things don't work and a lot of confronting my own expectations that, you know, I have this expectation that because she can, you know, speak and understand she will bey because that's how it works. You know, so I had a lot of challenges to how I thought things should be, and a lot of Why can't she just, you know, why can't she just get dressed when I ask her? Why can't we just, you know, go out the door? When I say we're going to park it's a nice thing, you know, so even things that were good things, you had to flag up in advance and scaffold and saying, we're going to do this, you know. So there was a lot of things like you could say, we're going to the park and having ice cream, but not giving her any warnings that would that would lead to melting down, even though it was something that I perceived as this is a lovely thing, why is it a problem? Because it'd been kind of slung in her lap and she wasn't expecting it. And then of course there was this kind of conflict, because on days when she went to nursery, and I just had the new baby, I felt like because she didn't ask me any questions. She, she demanded very little except feeding. She wasn't a sensory seeking baby. I was convinced she was going to starve, because she fed about every two and a half hours for 10 minutes. And that was about it. So I was sure that that was not enough to sustain a baby's life. So that contrast was really, really huge. And it actually meant that your times when I was looking after a newborn, it felt like times where I really was getting space to regulate myself, which is the opposite of I think most people's experiences of that, but it was quiet. So that was a lot of contrast. And I think that's going to continue to be a theme and I don't have to manage my second child in the same way. So there's not as much, you know, preparing for things that might be going to happen, there's almost kind of like, it's time to read your reading. Okay, I'll read my reading book- what happened there? She just did what I asked! And it's, it's very much about one being in a place where she can just react to things in a very neurotypical way and doesn't need that kind of warning, and one just needing that much more. So I think that that also brought the idea that there might be something going on to pan out into focus, you know, when you had, you know, someone who's in reception, so they're like four or five years old, able to cope with the vagaries of life more easily than a much older child who is much more sophisticated in their understanding. And that kind of clarified to me that there was something out with the realms of expected there, as opposed to just you know, I'm doing it wrong. So that was that was an interesting experience as well.
Emma Pickett:Yeah, yeah. I'm presuming lockdown disrupted the process of Anna getting necessary diagnosis as well, because there was lots of time when she wasn't around professionals or in those kind of spaces where issues would have arisen?
Eleanor Campbell:Yeah, we did occupational therapy via Zoom, all sorts of different things like that. Again, it was one of the times where it made it really clear to us that that neurodivergence was there because even in very early lockdown when there was no home schooling or anything like that, she was so unhappy and unregulated until I drew a timetable and stuck it on the fridge. And it said things like,
you know, snack 10:15. And, you know, do some art, play in the garden. And the minute we had that in place, she was just in a happier place, because that complete freedom, and you know, I might ask for a snack and mum might say yes, or she might say no and I don't know, made her very, very uncomfortable. And her behaviour was very poor at that time because she wasn't able to regulate yourself. And that was one of the things that again, was a real kind of clarifying moment that this is a child who needs a schedule, and needs that predictability. And other children might just say, Yay, freedom, I can do whatever I like, is not a good thing for her.
Emma Pickett:Yeah, that's really helpful. Thank you, Eleanor. I'm aware there are some people listening to this, who don't recognise themselves in your story, but I hope there are people that do and we're certainly not saying that, you know, you represent all neurodivergent parents, Anna represents all neurodivergent children. But I think there are some themes here are really helpful. And I really appreciate
Eleanor Campbell:And I think everybody has these spiky
Emma Pickett:Yeah, I really like that comment about what you you. should do for everybody is what you should do for an autistic profiles, those aspects that for them are big, and but for other people who are tested are not big at all. So you'll have, you parent as well. You know, everyone deserves the know, for every child who is sensory seeking, you might have one who is avoiding, who has the absolute opposite experience, and who are really difficult to breastfeed because they don't want that touch. You know, so you might get absolute opposite. And I think, you know, when I'm working with parents who are neurodivergent, it's always about kind of, I think what most people who are in lactation support should be doing anyway, in the sense that you ask what works for a person in front of you, you know, and you do what works for the person in front of you. So you don't say, This person is autistic. So I'm going to talk to them in this way and suggest these things. You say, what are your usual coping strategies? How can we roll that in and you don't touch them without asking because you wouldn't touch people without asking anyway, you know. It's, you know, so I think a lot of the things you were doing, do for people who neurodivergent are just good practice, you know, so, actually, you don't say to people, you know, go and have a lovely long bath, if actually, they're just not someone who loves a bath, that's not being relaxed, and maybe you want to go for a run instead, you know. So we don't dictate what the people we're supporting want. We ask them what works for them. And if you've got someone who says, Yeah, you are usually like, you'll go into a darkened room and do X, Y, and Z, or you've got someone else who says, usually I will bounch about and stim or something like that, then maybe you do suggest, well, if you've got a birthing ball, you could be bouncing on that maybe that would work, you know? So it is about kind of working around the people who are in front of you, and not assuming that, Oh, that's, that's what happened for her. And so that's what's gonna happen for people who are autistic. individualised support and listening and listening, and what works for them on an individual level. Are there any particular resources that you would recommend? So if perhaps, if somebody's autistic themselves, and they're about to become a parent, or they're a new parent, or if somebody's thinking about whether their child might be neurodivergent? Are there any resources? I know, that's a big question, because there's a million resources. But is there anything particularly you would point to?
Eleanor Campbell:Yeah, so there's a couple of, I think, there's been a kind of explosion of, of resources through the past few years as people are new as a lot more people getting diagnosed. And there's more awareness of what that looks like an adult, it's beyond the typical presentation that I think you're most of us, 15 years ago, would have understood that, that is autism. And there's lots of research being done now as well by both autistic researchers and people who have experienced in from their family and things like Aimee Grant in Swansea is doing amazing work on the experiences of autistic parents. I think it's still kind of to come to complete fruition in terms of what it means in terms of providing resources for those parents. But I think it's really interesting reading for anybody who either is going to be coming into that world in a support context, or looking for that might be. Because I think she's got a lot of narrative about what people have experienced. And I think that sense of reading what other people have experienced, is really normalising and, you know, it's one of the things I have always done, you know, someone says, I got stuck in the airport, I say, I got stuck in an airport once too and it's like, you know, it's this kind of making it all about me thing that I've discovered is a very autistic thing. That you're empathising, by saying it happened to me too. And I think that reading and hearing about what happened to other people is really important to knowing that that's what happened to this person. That's what that person experienced was really important. There's a couple of websites - Autistic Parents UK, and Reframing Autism have a lot of kind of parents' stories, and you know, things like that. And also, like your kind of, there's#ActuallyAutistic, where you can get access to other people who either are or are living with people who are autistic. That can just mean you can see that variety of experiences and you can internalise the idea that it doesn't always work like this, it might look like that. And if that's the way it is for you, that's totally fine. And you, you and your experiences are valid. And I think that if you're about to become a new parent, I think actually, for neurotypical families becoming a new parent is probably the most kind of levelling experience in terms of imagining what it might be like to neurodivergent. Because actually, that sense of unpreparedness, not knowing what's going to happen, feeling like everything's all at sea and you're totally unregulated, I think, probably for neurotypical parents, that's a time in your life, you're most likely people to empathise with that experience. So I think for neurodivergent parents, it's the same but amplified. So it's just that the amplification of that newborn experience anyway.
Emma Pickett:Yeah.
Eleanor Campbell:And, and understanding that you know, this being challenging might not actually be about your neurodivergence. It might also be about the fact you've just had a bomb go off in your life. And just thinking of remembering your usual strategies, and remembering that they're all still valid and appropriate. And even though the circumstances around you have changed.
Emma Pickett:Yeah, that's really helpful. Thanks. So we'll put some of those links in the show notes. And Dr. Aimee Grant, we'll put that link in the show notes as well for that Twitter account, which do we call it Twitter? I'm still calling it Twitter. And, yeah, thank you very much for your time and I really appreciate it. And you're not hard to find you're Eleanor CampbellIBCLC in various places...
Eleanor Campbell:I'm@Eleanor.ibclc on Instagram. And yeah, if you search Eleanor Campbell Breastfeeding, there's not another one. There is an Eleanor Campbell who's the Duchess of Argyll, but she doesn't do a lot of lactation support.
Emma Pickett:Excellent. Thank you very much for your time.
Eleanor Campbell:Lovely. Thanks Emma.
Emma Pickett:Thank you for joining me today. You can find me on Instagram@EmmaPickettIBCLC and on Twitter@MakesMilk. 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.