Epiosde 13: Coping through connection and community with Melanie Dimmitt

~music - “Wake me up, loud as clouds..all my love for you. You’re a dreamer, I am too. it’s f**king normal we could rule the world”...

Rina Teslica  00:26

This is the Fucking Normal podcast. I'm your host, Rina. 

Lauren Fenton  00:30

I'm Lauren. 

Rina Teslica  00:31

And on today's episode we'll be talking about a subject that is the Fucking Normals' raison d'etre- coping through connecting with others and building community. It was back in episode 1  of the podcast that we talked about Loneliness, and why finding others that get it- is so important for us. It really is one of the best things you can do when you start down this less-typical parenting path. It doesn't have to be face to face or a proactive and specific diagnosis related-group, which can seem daunting in his early days, but even something more passive like a book, film or a podcast. When you are struggling, there is such comfort in realising you're not alone. Hopefully those listening are finding out that there are so many cool families out there similar to you, people that you would hang out with anyway that are doing disability their own way that can share their war stories, their moments of joy, their wisdom and collective parenting knowledge to help you along the way.

Lauren Fenton  01:21

And our guest today is Australian author and journalist Melanie Dimmit, who has done so much to build communities in the Disabled Parenting space. Mel, who is mum to seven year old Arlo, who has cerebral palsy, and Odie, who is five, and, as Mel puts it medically boring (I love that). When Arlo was diagnosed Mel coped by connecting with others in a big way, using her journalistic skills to interview and write about others who had trodden this path. And so her debut book was born- Special- the antidote to the obsessions that come with a child's disability. Candid, validating, and really fucking useful, it is something I'd recommend to any parent to a disabled child, particularly at the beginning of their journey. Since Special, Mel has continued to do so much in this space, and amongst her achievements are an award-winning podcast, helping parents to navigate the Australian disability benefit system, NDIS. And last year, as Arlo had recently started tube feeding, what did she do? She went and launched a magazine, The Blend- an annual lifestyle magazine, designed to inform and inspire the tube feeding community. Absolutely amazing. So, so happy to have you on the podcast, Mel. Hello, welcome.

Melanie Dimmitt  02:42

Thank you both so much for having me. I feel right at home being on a podcast that has 'Fuck' in the title- I'm just giving you a warm embrace- you're my people.

Rina Teslica  02:55

I think I knew it, like, in the first paragraph or so of your book. And I was like, yes. She is my type of person. 

Melanie Dimmitt  03:03

Pretty early on first page, I'm sure. And then on many pages within again and again.

Lauren Fenton 03.06

If you can't..I mean, you know, each to their own but if you can't swear and laugh and rant, then you know, what's the point? You're making Disabled Parenting way harder than it needs to be.  Can you start Mel, and maybe I'll just mentioned now that Mel and I actually know each other through a mutual friend from the days when Mel lived in London. So it's like amazing to be  connecting again after all of this time. And I'd really like to hear just how you are doing now and to know bit more about Arlo and your family set up and what are the things like?

Melanie Dimmitt  03:45

Yes, Lauren, so awesome to reconnect, like you say.. We knew each other- It feels like a million years ago- through a mutual friend who was my housemate. Hi, Vics, if you're listening, I really miss you. We're good. Arlo is still up, so we could be better. And I'm sorry, if you hear noise in the background. It's night over here. We're good. Everyone's relatively healthy. We're very busy. My partner Ro and I both work pretty much full time. He's in the media too, he's a newspaper editor- and I write and we both do it from home, work remotely most of the time. So we're here, with our kids, pretty much all the time, with zero boundaries, and it's really fucking stressful. But amazingly, amazingly flexible. You know, we got a call from our school today saying he's not quite right. And we were there within you know, 10 minutes so it's beautifully flexible. I think it suits our lifestyle really well. We can drop everything and head into hospital or do whatever we need to do. I'm making it sound like our life is a disaster. We've had a pretty good run of no hospital for a while now. But yeah, I'd say we're having a good patch. Arlo is loving school down. He's in the local public mainstream school, in year one. This year, he's got full time one on one aid with him the whole time, which is wonderful. He adores school, he's always been a really, you know, social little guy. And his sister Odie joined him this year. So it is so cool to drop them off, you know- we get to go into the rock star amazing disabled parking area now with our van that we just got that has this incredible ramp that just automatically slides out like it's red carpet rolls out and Arlo comes down, and Odie insists on walking down the ramp as well. And they think it's so cool. And it's just you know, now that I thin that they're both at school, I really feel like we're in a bit of a- I don't want to say easier because, you know, I'll jinx it. Yeah, it's got different challenges but it's definitely simplified things- them being in the same place at the same time, most days, and we don't have sickness. So you know, things are good. I'd like a bit more calm. We definitely work too much and we need more holidays and more date nights. We have zero at the moment, but generally, we're pretty happy. We're laughing every day, which is good. 

Rina Teslica  06:05

Oh, lovely. 

Lauren Fenton  06:06

That's beautiful. And not to kind of jump from that beautiful positive image of now but can we now rewind to back to how things were at the very start and how you, Arlo's diagnosis and how you coped with that. And I guess how you decided to go and write Special? I have to say, I'm so impressed that you're kind of, what appears to be, way of coping with things is to use your tools to go and create something. It's amazing, but tell us at the start. 

Melanie Dimmitt  06:43

Yeah, so look, back when Arlo was diagnosed with cerebral palsy at six months, if you'd have told me what my life would look like now- that I'd be talking about ramps coming out of cars and wheelchairs... So Arlo has got quite profound cerebral palsy, he's level five on the jmfc. I always say this wrong, but that scale. So physically, he's quite impacted. So he needs to be in a wheelchair all the time, he can take steps in his walker, which is really cool when he's in the mood, which is not always. He's also non- speaking. So he communicates a hell of a lot through his eyes expressions, the gorgeous sounds he makes and he also uses this incredible AAC device, where he's talking with his pupils, which just blows my mind- that if you told me any of that, back when he was diagnosed, at six months old, I would have died. I wouldn't have coped with it. When we got his diagnosis. I did not handle that information very well. I didn't know what cerebral palsy was. We were warned he had a really shitty birth. My pregnancy was pretty normal. I think we were four days past our due date and I could feel that he wasn't moving around as much and I'm guessing it's the same there. They say, you know, if your baby feels weird go into the hospital. So we did and they checked him out and they said oh no, he looks alright- go home and we were driving back and I was like, no, no, it's definitely feels wrong. So we wenr back again. They kept me in overnight, kept checking on him and he seemed okay, but they said look, we'll induce you in the morning. And they that next morning, they have me hooked up to the foetal heart monitor- we were just about to be induced. And out of nowhere his heart rate just dropped dramatically. And then it was button pressed, the emergency Csection called for, me under, within what it felt like 10 seconds and me just watching my partner Ro's face sort of disappeared down the hall as I was being taken off to theatre and being put under. So it was a very dramatic entrance. And I woke up in the NICU, they placed gorgeous Arlo on my shoulder. He looked straight into my eyes, and it was just love. And I was like, this is fine. He's alive. We're all good. He was in NICU for a week, they did a scan of his brain and it showed there was bilateral damage to the motor section of his brain. And they said look, we'll just have to wait and see what happens. They said worst case scenario, it'll be cerebral palsy and I just let that slide right over me. I was like, I'm not having to buy that, that's not going to be us, he's alive. We're fine. It will all be fine because everything is always fine. I could not cope or even think about cerebral palsy, whatever that was, as being you know ,what our life is going to be. And as the months went by, gorgeous Arlo, so smiley, so engaged, so wise- did not hit hit a single milestone, so he never rolled over, never sat up, couldn't hold his head up. He still can't do those things. So at six months, we were given the diagnosis and I thought the world was over. I did not see any way that my son could be happy or having a meaningful life. I hate talking about this now because I'm like, what an idiot, that girl. But at the time I thought this was it and I wasn't accepting it and I was bargaining with the universe and being like, this is okay as long as he can walk and talk and no one can tell that he's got a disability. I'm guessing you guys might have felt something...

Rina Teslica  10:03

Exactly the same. It was hell on earth. And then I also feel terrible for that girl, seven years previously, just, yeah, it hits, you hit the right spots. And it's just it's like, it's really fucking weird, but it's like being seen. And it's also so valid these like, Fuck man, I was an absolute bitch. But it's totally normal to feel that way. So thank you. 

Lauren Fenton  10:32

If you haven't had exposure to disability, and, you know, I guess we're all kind of a similar age that also in our upbringing, there's probably a lot less kind of visible people with disabilities on TV or anywhere. It just, it's just a different world that you don't understand. And you know, the kind of views I didn't think I had overt, kind of, like ablest views, but I definitely had those internalised ablest views, just because of the way that I'd been socialised. And you just.. Yeah, I think it's, it's good to remember that in a way though because I think, when you're up against other people now, or you know, you get the looks or whatever, it's good to kind of remind yourself that it's only through educating yourself and being immersed and and your child educating you. And, you know, waking up to the fact that this is not the end of the world and that every child is just as valuable regardless of ability.

Melanie Dimmitt  11:36

Yeah, that's it. And that's what I love. I love that Arlo is in mainstream. And I love that he has all these friends. And I love that he has a sister because I just, I already see how these kids get it. And I wish that I'd had more awareness of disability, I wish they'd been disabled kids in my class, I wish they'd been at uni, I wish they'd be more at my workplaces, because then I do not think I would have freaked out the way I did, and thought it was the end of the world. I'd just sort of seen that it's another way of being on this earth. And you know, in a lot of ways, it's a lot more interesting. And you get all the fields at both ends of the spectrum. And I certainly think we're getting a much richer life as a result. But yeah, at the time, I couldn't accept it. I was so sad. I was so frightened, I would have given anything for a glimpse at the future. All I wanted was to know that he'd be walking and talking and be fine, and that this wasn't going to be the nightmare that I thought it was, the thing that came up when you Googled quadriplegic cerebral palsy. And that's when I thought, look, and it's something. I really wanted quotes. I love quotes that make things you know, like inspirational quotes that matter. And you're thinking that's, I just need words, I need words, like, where am I going to get those from? And I just thought, well, look, I'm not the only person on the planet doing this. I don't want to go to those, you know, disability or special needs parents support groups, I'm not ready to, you know, admit that I am a parent who should be one of those groups. I am a writer, I'm a journalist, I love talking to people interviewing people, I'll say I'm writing a book, I'll reach out to people I find in the real world or on Instagram, or wherever and interview them and say I'm writing this book, and I had no real intention of actually writing a book- it's really just an excuse to talk to parents and say, Help me, how did you get through these early months? Please tell me this isn't what I think it is. Please tell me your child is okay. Please tell me that there's, you know, any chance of happiness in my future, and oh, my gosh, the session I started talking to these parents, I felt so good. I just felt light, I felt understood. I can feel it. I have it with you guys, like we don't know each other very well but there's this instant rapport that you have with parents who are raising kids with disabilities. And as soon as I started having these conversations, phone, on Skype at the time, it was before zoom. I was just like, there's something here. There's something about this connection, this community and people were saying, you know, they're in vastly different scenarios, and different countries with different kids with all kinds of things going on different diagnoses, some of them without diagnosis. But the same things were coming up. And I was like, these are themes. These are chapters, and a book started forming and post-its it started going up on my walls. And I was like, There's something here. And it was so amazing to have a project to sort of disappear into as well.

Lauren Fenton  14:28

Did you find it easier at the time to talk to parents who had a different diagnosis, or were you kind of keen to latch on to those that had that same diagnosis?

Melanie Dimmitt  14:38

Well, it's an interesting question- both. I remember talking to a mum with a kid who had a similar diagnosis to Arlo. And that was harder. You're right. And I remember being so disappointed that she said that her son wasn't walking. And I'd be nervous to sort of ask like, so what's happening? What are they doing? But then I kind of got past that. It took me a while but when I started writing Special, I wasn't ready to hear that my son, I really wasn't there, like I probably shouldn't have written it as early as I did. I was very much writing from my wounds, not my scars. But I, I couldn't write that book now. I can't look at it. It's the parents at the start of this but I think it needs to be that way. So it does something. So that helps parents at the start of this. It's all well and good me saying everything's great now. But you know, how does that help someone at the start? When we know it's just, there's nothing worse than what you're going through at the start of this. When you think your child isn't going to have a happy life? I don't think there's anything worse than grappling with that. So you're right, I did find it easier to chat with the parents who had kids with completely different things going on but

Lauren Fenton  15:45

I think we found that as well. Suddenly at the start, I completely avoided that. So Bea has 18 Q deletion syndrome. I just did not go to any of the groups online. Any of the information I looked at the case studies were given, I said nope, we were we were not one of those case studies. We will be our own case study. I think it's just- you don't want to define a set of expectations and, you know, in either direction for your child. And yeah, it's I found it much easier to to be away from something that had a direct comparison. I know Rina was very different in her approach.

Rina Teslica  16:22

Yeah, I was on that Instagram, like Noonan syndrome, Noonan syndrome UK, Noonan syndrome America, trying to find as many kids with Noonan syndrome as I could. But the thing with our diagnosis is Lua has the rarest form of Noonan syndrome. So it's incomparable. All these kids with the standard Noonan syndrome are so different, but it just did give me hope, like, Oh, it's okay. She can, she will be able to walk, eventually, she might be able to talk. And so I had, I don't know if it was a good thing or a bad thing. But I did have expectations. Well, you know, if this kid in America has got Noonan syndrome is doing this, then you should also be able to do this. And it did take me quite a while to be like what actually, you're a rarer form of Noonan syndrome, and it's gonna take you time or a different pathway, or you might not even get there. But in the beginning, it was very much like I needed to see parents living a normal life with a child who has Noonan syndrome. So yes.

Melanie Dimmitt  17:27

Cheers to that. And thank goodness for Instagram, is all I can say. I do not know how parents did this before that, and it's interesting you're talking about it again. I haven't thought about this in ages but at the start, I was like we're gonna be mild, mild CP, mild CP and I was looking at loads of mild things. I'm like, this is okay, we can manage this. But now I almost feel that parents who do have kids with milder things, struggle more, because it's almost like when you're closer to the typical, you keep trying to get there, you keep trying try and try to go by the milestones. And I'm like, we just had to chuck out the book, like Arlo has just led the way. And we've just, you know, followed his lead and just, you know, he's shown us who is going to be and what he's going to do or whatever, like we had just have zero expectation, which is actually it was lovely as well, when we had our daughter, just not worrying about milestones or anything. Like it was really nice that he set us up for parenthood like that, which I think is just a good way to approach parenthood anyway, without all these horrible milestones and expectations that we automatically have.

Rina Teslica  18:24

 And the comparison. 

Melanie Dimmitt  18:26

Oh, yeah, comparison. Bloody hell.

Lauren Fenton  18:28

So coming back to connecting then and the people that you connected with, was there a moment when you, because obviously you were really dealing with your own Denial? Can I say denial all the time? 

Melanie Dimmitt  18:41

I love denial. 

Lauren Fenton  18:42

Yeah, denial, I was the same. So dealing with your denial in those early days and then reaching out to people, obviously, things were looking to be brighter than you'd perhaps imagined. Was there a particular interview or a particular moment where you went, 'Aha', like you sort of flipped into that acceptance zone, if you like?

Melanie Dimmitt  19:03

Yeah, all of them did that a little bit. For me, there was a couple that really stood out. One of them was with this incredible woman who called Ondine Sherman, who's an author, who wrote a memoir about her experience raising her twin boys. It's called the Miracle of Love. So I'd read her memoir, and that really helped me. Her boys have a genetic thing, but really similar needs to Arlo. And when I interviewed her, you know, she had two I think, 11 year old boys at the time, both in wheelchairs, both really profound, you know, disabilities. And she said to me, I'm living my worst nightmare, and I've never been happier. And when she said that, I was like...Hold on, I'm even getting goosebumps now. And I put that in the book because I was just like, I was preparing to interview her and I was like, I hope this isn't my future. I don't even know how she's coping right now. And I think when she wrote her memoir as well, it was hopeful but there was definitely ,no she wrote wrote it early. But yeah, when she said that, and I could, I could see I could see how happy she was. She was like radiating through the Skype. And I was like, wow. There's hope here. And you know, she she was amazing for that. And another interview that really helped me was with Debbie Elnaton, who is the inventor of the Upsee, which is, I don't know if you guys have seen it, It's this contraption where you can strap your kids on to yourself and walk around with them. So your child gets the experience of walking. And she has a son with CP, quite a bit older. And she sort of said to me, you know, people, and at the time, I was obsessed with Arlo walking, I was just like, he just has to walk no matter what it will keep working on it. We'll be turning him around all day, every day. And she was like, when you talk to disabled adults, they don't actually care about whether they're walking or in a wheelchair or whatever. What they care about is having a social life is, having friends, is having fun. Like what kind of a childhood is Arlo going to have if you just have him doing physio exercises all day. What kind of a childhood is his sister going to have if she's just being carted around to therapies or watching her brother get propped up against the couch. You know, therapies are important. But Debbie made me realise it's much more important that Arlo has a sense of humour, and is nice, especially as someone who's going to need help his whole life. No one's gonna want to help him if he's an asshole, we need to develop social skills, we need to develop a massive social circle and same with us, you know, we need to get out and, and that really flipped my thinking. And we're lucky that Arlo is very likeable, very popular. He does have loads of friends, but we're really conscious of like, making sure we nurture those friendships have the playdates, which I'm not the hugest fan of, but we do all the, you know, the parties and the playdates and things like that, because he loves it. And I now think that that's more important than his little body that was never meant to walk by itself walking.

Lauren Fenton  21:49

And do you find, I mean, I'm not surprised that he's sociable and gregarious and everyone loves him, because I'm sure you know, the apple doesn't fall too far. ..And cheesy. But no, actually on that on those lines. Obviously, it was your craft, your trade was, you know, journalism and writing, but reaching out to people, connecting- Is that something that kind of you've always been good at and came naturally to you? Because I think, you know, it's all very well us three as quite sociable, I'm assuming you're quite sociable Mel, from our past lives, But it's all very well for us if we are naturally able to do that. But I know there must be parents that don't have that kind of, I guess, social skills or nervous about reaching out to people. And it's, I guess, what would be your advice to people who are perhaps less or more reluctant to want to connect and join communities.

Melanie Dimmitt  22:46

That's what your podcast is for. Look, at the start of this, I wasn't ready to talk to anyone, not the groups, not interviewing people. But I just listened to stuff and I read stuff. I think podcasts are so much easier to get into than books, especially at the start when you're so freaking tired, and you can't focus on words, let alone read a book. I just think podcasts like yours are the way, like the first step, where people can listen to them at any point, when you're up, rocking back and forth with your kid, being puked on, whatever. You can have the podcasts and instantly be plugged into this community of people who get you and you can hear them saying the thoughts that you're having.  My suggestion would be like, get on the podcasts and get into the Facebook. And it's I mean, I'm more of an Insta gal, I find the Facebook groups can be quite negative, which has its time and place. I think it's great that there's a place for people to rant but I found they were kind of bringing me down, whereas Instagram, pretty pictures, captions and things. I was like, this is more my vibe, but I say linking to any social network, you can and through that. I mean, like how did you guys meet? How did that happen? Did that happen in real life? Or did that happen on social media?

Lauren Fenton  24:04

We're on this big Whatsapp group, which was kind of some friendship groups and people who'd met through chance encounters. Rina went to school, her kid goes to school with another friend of ours. So it was like kind of everyone was brought together into this Whatsapp group. And I'm not saying WhatsApp groups are brilliant, but this one was, so and it was pandemic-time. Yeah, during the pandemic, if you didn't have face to face opportunities, so it became our rant rave. And I think what you say about sort of being more passively engaged with something is really important. I think almost even in social media circles, you can you can join a facebook group without having to go like posting you can without being like really creepy. You can like spy on people on Instagram. It's like your Yeah, I definitely...

Melanie Dimmitt  25:01

Yeah, I lurk on heaps of Facebook groups, big time. But I'd say as well, I feel really fortunate that we did start this journey before COVID  a lot of the friends I did make, were just through sitting in the waiting rooms at therapy centres, like waiting to go into physio or OT and just exchanging like a tired glance with another parent sat across from you, and their glance would turn to a smile, the next time, the smile would turn into a hello the next time and then eventually you're going for coffee, and then you're going for a wine. So,in those therapy centres and being in, you know, big gyms, where you can see other families, with kids like yours, or, you know, with other things going on, doing exercises, that was a huge part of me realising I wasn't alone in this. So you know, you're gonna get your kid into early intervention. Anyway, you've got hope gonna hopefully be in these communities in these big therapy centres. And that's a lovely way to actually meet people IRL, and just how friendships organically develop, like the olden days.

Lauren Fenton  26:00

I have a few IRL start up in in waiting room friendships. Yeah. And, and weirdly, also a friendship that started when a physio put me on a blind date with another one of their mums, which was 

Rina Teslica  26:14

I've had that too, 

Lauren Fenton  26:16

I think, Oh, my God. Any therapist should do that. Like, please do it. Yeah, it's really, really lovely. And you can tell I think when you know, two people are gonna get on. That's really cool.  Yeah, that's a sign of a good therapist right there. I think if they're match making- that's a really good sign of it. Yeah. It's a real holistic approach there. Yeah, exactly. And tell us a bit about what you've done since Special, like in between special and the Blend, and then we'll move on to talking a bit about your experience.

Melanie Dimmitt  26:48

Yeah. So after Special, like a Special kind of got me into the disability space. And someone I interviewed in Special was a guy called Jordan O'Reilly, who was the founder of a disability support organisation over here called Higher up. And he grew up with a brother Shane, who was a lot like Arlo, and he had this amazing new concept for disability support where you, it's like dating. I work for this company. Now they hate when I compare them to Tinder, but it is you set up a profile for your kid or yourself. And you match with disability support workers, I don't know if you'd call them like care workers over there for the Disability

Lauren Fenton  27:24

Support Workers.

Melanie Dimmitt  27:26

Yeah, and like, as a parent, I wasn't even told that support workers were a thing, I thought that we'd be looking after Arlo and the only people on the planet who knew how to meet his needs for our entire lives, I didn't realise that there were people in a profession, who would be there to support your child and be as good as you if not more at certain things. So I was really excited to chat with Jordan, about his company and about his concept of matching families with support workers where they shared something in common, where they got along, as friends where, you know, the support worker really became part of the family. And after I wrote Special, he asked me if I'd help write his company story into a book. So I wrote a book with him, really got to know the company really well. And from there, he just kind of kept nudging me into the company. So now I work part time for Hire up, producing their news and features platform. So I commission writers with disability to write opinion pieces in response to the news. So you guys might have seen that Beyonce changed that lyric in her song. That was because of a piece that we commissioned that little old Higher Up, from how that got picked  up by the Guardian.  So we're making big waves. Yeah. So we're a tiny chain, but we're doing really cool things. And I do the NDIS podcast through them. So it's the National Disability Insurance Scheme we have here in Australia, which is incredible. It basically means all of our lifts, therapies, the new ramp that's coming out of our car now, his support worker, his equipment is all covered by the government by taxpayer dollars. So we're super lucky to have that here. We're fighting to keep it. So I do a podcast where I chat with other parents and people who are on that scheme about- it's great, but it's really fucking complicated. So you really have to know how to work it and make it work for your family. So I have a little podcast that sort of decoding that scheme and helping families do it better. But yeah, I guess I started working and writing in disability from a parent perspective. Obviously, I can't speak, I try and I'm trying to understand it better. It's interesting working with writers with disability as well. Hannah Devaney, who wrote the article that got Beyonce to change her lyrics is a friend now and always asks about him. She's really interested in Arlo and always asks about him. She's got CP as well, and I can ask her stuff, like why does he get so shitty with his sister sometimes when she's like, running around. I was like, is that because he's jealous? And she was like, 100% Like she said, I still have that with my sister 100%. He is just jealous that she can run away with ease. And having someone to you know, be able to like, try and tap into what he's feeling is just so valuable. So I'm learning so much from disabled adults, you know, better ways to support Arlo. So it's been really good for me. And I never thought I'd be working in the disability sector. I went from, you know, women's magazines, really into this space, but I love it. I love what I'm writing now, you know, before I was writing, like, you know, 10 ways to start your morning better. And now, you know, I'm helping to publish opinions from people with disability on important topics. I'm writing stuff I care about. So I never planned to be working in this space. But here I am. And it's been incredible.

Rina Teslica  30:43

Oh, my God, it sounds incredible. It's I'm just in awe of you. Just

Melanie Dimmitt  30:49

You're a writer too.

Rina Teslica  30:51

I am. So I'm doing that 10 ways to make your week look better. So yeah.

Melanie Dimmitt  30:58

They are fun to do a bit of that. Don't get me wrong. But have you started like, do you write about your experience as a disability parent?

Rina Teslica  31:06

No, but I feel like talking to you, I should start doing that. Like, yeah, I wrote a blog when Lua was born because I was sick of people just sending me WhatsApp like, how is she, okay? Oh, and I was like, leave me the fuck alone. So I just wrote a blog instead. And I was like, if you want to know what's happening in our lives, then just read that so I don't have to deal with the million messages that I get. Yeah. But then I think I just got to. I did it all the while that we were in hospital. But then once she came home and the responsibility of looking after her then on me and her dad, it was just way too overwhelming. So I was like, I can't do. So I still, I think I should, should get to it.

Melanie Dimmitt  31:50

Definitely do. And it's such a great way to build awareness around what our experience is actually like, does the parents like us at the beginning and read more this stuff and say it's okay, like you can do this this life is I mean, challenging, but still happy. So yeah, please do- we need more writing from parents like you out there.

Lauren Fenton  32:07

They're going to do it. It's amazing how many parents have a pivot? Like, I mean, it's kind of not surprising, but it's also like, incredible that, you know, you have kids, I guess your whole life view changes, potentially, in most cases. And that's going to change what you want to do with your life. But it's also, I guess, there's a lot of gaps. Which kind of leads us nicely to what happens when Arlo got a new diagnosis for his tube. So can you tell us a bit about the how that diagnosis came about and how you felt and then how you ended up doing The Blend magazine?

Melanie Dimmitt  32:52

The most random magazine in the world? It's a tube feeding magazine. 

Rina Teslica  32:56

I wish I wish that I had found this or that you had made it like maybe three years previously, that would have been really helpful.

Melanie Dimmitt  33:06

Well, I was still, we were still shoving food into his mouth three years ago, when we shouldn't have been, we thought he was really good at eating and he seemed to be enjoying it. And you know, if I'm honest, we were avoiding the inevitable. Everyone was always surprised that he achieved this with his level of disability. But we're like, No, we're good at this. The speech teachers were all saying yeah, it looks like he's developing a stronger chew and kind of anyway- just before he turned five, we did a modified barium swallow X ray that showed that he was aspirating on every single bite of food and sip of water that was going in and yeah, it was like nil by mouth. We're really lucky we didn't have to go through the NG horror and just said no, just get us into the G Tube surgery if we're doing this we're doing this. Within two weeks, he went from spoon fed to G tube and I don't know if it's the same there but the second they put a kid or a person on a tube- Even if you were eating regular food prior- they put you on a diet of commercial formula. Arlo went from breakfast, lunch, dinner, snacks to six bottles of a really disgusting smelling commercial formula. That was it just like drip fed through a pump. Yep. And there was something about this-  like there are a lot of things, like Arlo doesn't talk and doesn't walk. We're okay with that. We get, that we're on board. We see that that makes sense for him but there was something about eating that was truly fucked- that just really hurt.

Rina Teslica  34:31

Oh my God, believe me because I studied nutrition, so food is such a big thing for me, the family or whatever. And kids with new Noonans always have feeding issues. So like we knew, and she had a peg kind of from when she was four months old. They wouldn't let us go home without having that so I was like fine, but I will get her to eat. And just the milks were just disgusting and it felt so inhuman like just It's not normal to be having basically a smoothie of vanilla smelling, shite shoved down our stomach, like literally eight times a day. And it was like, I can't do this but she was so not interested in food. And it was such a struggle, mentally and just, I hated the whole concept. So I did give up. I was like, right? This is just how it's going to be. And I'm just going to have to suck it up. I tried blending. And I tried to like, take some sort of onus, if I can't control that you've got a peg and that you're gonna have to have smoothies, I may as well just make you something healthy. But then it was, she was so used to having the milks that it was such a terrible transition to get her to food. And at the same time, I was trying to orally feed her and it was just a fucking shit show. So I stopped completely. I was like, right, that's it until she decided, November last year, that I'm ready to start eating now, out of the blue, like it was just, nobody expected it. We had no clue that that was even in her mind frame of wanting to eat, she picked up the spoon opened her mouth. And she's been eating orally ever since. And now we're in the person removing the peg. But it's been like a yes.

Melanie Dimmitt  36:16

That is an amazing story. And you were totally going in the next issue of The Blend. That's very cool. I think a lot of parents want to hope for the tube to come out. And they're working toward that. We're very much with this. Again, we've thrown out the book right now- this is clearly once we got it right. Right. This is actually amazing. At the start when he was connected to a pump with these bottles, it just felt like he was dying, like we're end of life. And I think part of the problem there is that tube feeding needs a rebrand because so often it is associated with sickness and hospital and deaths. And there are sooner now I've met so many people and families to feeding where the tube is the reason they're healthy and having an amazing life. So my magazine was a part of yeah- the rebrand of tube feeding for families, so you're not feeling like this is the end. And yeah, we had to be really brave and kind of go against medical advice. And I went into the Facebook groups and was like, What is going on? My kid is like, the formula was terrible. He was puking, so much reflux, and then he was aspirating on the puke and reflux. And we were in hospital even more. And I'm like, apparently he was silently aspirating before- there was nothing silent about the way he was aspirating once we were on this formula, so it was such a low time. We were just like, What the fuck? Wait, we can't, we can't feed our own child. And that's just such a terrifying thing. It's the basic thing you need to do as a parent. So one night, I'd like put him to sleep. He had vomited to sleep. Basically, he was so sick. And I was like fuck this and like drove to Coles, like a local supermarket. Right before it closed, I bought his usual breakfast like yoghurt, WeetBix I was I'm just going to put in his mouth in the morning. And I did just like, stuff it like, I fed him which I'm not meant to do as he's nil by mouth, but I have no other option. This is bullshit. This was meant to help and it didn't. Anyway, luckily got advice from other parents, other families doing this through Facebook who said the formula is just not going to work for your kid if this is happening. Because we kept I kept saying to my dietician, what do I do? I've heard about these blended feeds and she's like, You can't try that until you get the formula right and this the formula was never going to be right. But the medical people kept saying it has to be right. Anyway, we just blended up with stuff he was eating before. So it was thin enough to go through a syringe. We put it in way too fast, the first time- it just came straight up but then we did it slowly. And from that moment on, his colour came back, his sparkle came back. He was himself and then he just started thriving. And now he just has normal food blend up, super thin with our Vitamix. He's back to breakfast, lunch, dinner and snack he eats with his sister, usually in front of the TV, and they're together and it's lovely. She's there with her little bowl and her little table that we call Cafe Odette. It's just made meeting normal again- it's not all medical. Yes, there are a heck of a lot of syringes involved and I'm like a chemist with my little mortle and pestle, like with his million medications, but we've got it down, like I don't even think about it anymore and I remember at the start the tube feeding seems so intimidating, even like how the clamp and you know there's so many bits of kit, there's so much going on. I cannot do this, it's so overwhelming. It's so scary. It's so medical. Now, we've just got it down and it's just again like a normal part of life but it was a lot of mess- you know when you bang the air bubbles out of a blend you end up with crap all over your ceiling.  Terrible.  A lot of learning but we got there and now he's never been healthier. He's, you know, he's thriving, being able to put it all straight in there when he's sick. Oh my gosh, like the medication side- he's hydrated. The poor kid was not getting any water, like we were there with his cut out car but it was mostly, you know, thickened fluids. I never want to hear the term thickened fluids again, it like triggers me. He's just getting so much water now if you can top dab, so it's been great. But yeah, at the start a bit rubbish and again, just like Special, I needed to know this was going to be okay. So I interviewed families, people who achieved, the professionals in the space. And I was like, why can't we have like a sexy magazine? Why can't we have, you know, the Vogue Living for tube feeding? They reached out to Ed Swann, who's this incredible designer I used to work at a magazine with- I was like, would you make this with me and sent her some ideas I had for the aesthetic and she designed it. She's my creative director. Now the two of us are making this thing annually. And yeah, my latest cover stars another UK talent. Loretta Hobbs, who's the nearby mouth foodie, who's this incredible person in the UK, she's a chef who's fed via her heart, she's on TPN. So she doesn't put any food in her mouth. And she's this amazing chef, sort of showing people, there are many ways to do this thing. And tube feeding is not the end, and you just make it work for you. And yeah, so it's the resource I wanted when we entered this space. And my hope is to just get it into the hands of as many tube feeding families, you know, preferably before they even get the tube in so they can see what this you know, all the options that are available to them.

Rina Teslica  41:24

And it's so difficult in the UK, because so it's been, it would have been three years ago that we would have started like the blended diet, but there is absolutely no support. And dieticians here don't like you doing it. And there's a big push back. So if you are to do it, they kind of sign off and say, that's your responsibility. If anything happens that's on you. Don't do it. But you know- they give you nothing. So at the time, so three years ago, the space was so there was nothing in the space, I couldn't find anything I found, like the most awkward book on Amazon that I bought, which was terrible. But it had some really nice recipes, but it was just, like really depressing. And it's like, shit, man, what am I doing? I don't even know what I'm doing. And then the fact that you know that if you're making it too thin, you're cutting down the calories, which means you have to give them more. And nobody tells you any of this. So it's...Yeah, I think that's why I gave up because it was just too too much. And when you're dealing with all the other medical bits, it's just way too much responsibility. So I was like I've had enough. But if I had had your magazine, it would have been different.

Lauren Fenton  42:35

Is it available in the UK like Is it is it a digital magazine or physical?

Melanie Dimmitt  42:40

It's free to read online, the Blend mag.com. You can read it there, you can get to get the first ones up on Amazon if you want. I didn't think people would care about it being in print, but they really liked the print magazine. So,you can buy it by Amazon or get the second one up there as soon as I can. I do like it print run of 1000 copies here in Australia and it's distributed through businesses that are in the tube feeding space, this incredible, accessible fashion label called every human send it out with every order during Feeding tube Awareness Week, Wholesome Blends, which are these great like pantry or shelf stable pouches of real food that you can feed your kid on the go, which is amazing, so you don't have to get out a frickin blender for every meal to be fine, and Tubies, which makes these gorgeous little G Tube accessories and things. Do you guys know about Bluey over there?

Lauren Fenton  43:31

Bluey as in the cartoon? Yeah, I love Bluey is like amazing. 

Melanie Dimmitt  43:40

So she makes `bluey accessories for all the tube feeding businesses and I give it out to some therapy centres. So it's a limited print run. But yeah, available on Amazon and there to read for free for anyone who wants to put in the details.

Lauren Fenton  43:54

We'll put in the show notes because I'm sure loads of people are going  to want to. I mean, I, so I'm not a tube feed- Bea is not tube fed, she eats orally but I had a look through the first copy. And it was incredible. I found it really really like I felt like I learnt loads and just felt like I understood so much more than- you know- I've got several friends, including Rina whose  kids were tube fed. And it's really good to kind of, I don't know, I think as a resource, not just for the parents, but for those around them, you know, for other kids to see. And because I'm sure you've experienced, you know, I know certainly even my kids, or my older kids asked about it like, what are you doing? How like, how is that, why is there food going in there? I think just for like family, friends anybody that's got any connection to the tube feeding community- its a wonderful resource- and I say resource, but it's also just like lovely to look at. It's just glossy and like it's the sort of thing you'd want on your Coffee Table like yeah, that's very nice.

Melanie Dimmitt  45:02

I hope so. Like we need sexier resources in this space as you guys know well- you either get a dodgy pamphlet, something that it looks like it's made for children with rainbow writing all over if you get anything, so I think

Rina Teslica  45:15

Why is the paper always grey? like it just makes it even more depressing I don't know if it's just me but

Lauren Fenton  45:20

I think it's the NHS, I think colour printing isn't exactly ...you know we're trying to trying to save money here in the NHS, so yeah black and white grey pamphlet.

Melanie Dimmitt  45:32

But even the brands,like the the disability brands the people that, you know make the equipment and like, why can't it look like Nike or why can't it look like you know, respite look like Airbnb- like why can't we have sexy branding? Certainly in Australia, like we've got the NDIS now and there's the money there- so you services need to be lifting their game. Why not focus on, you know having awesome brands and not even make it, you know, disability, just make brands that are inclusive for everyone. We don't even need like a separate sector. Why can't just everything be incredibly- this is like big, big or whatever but it was just so depressing, like looking even at some of the pieces of equipment that we'd have to have in our house. And being like that is so like looking at that just makes me want to die. Why can't the stuff be cute? There's been huge improvement but still I think there's a long way to go, to like find it attractive and standout. And I'll yeah, I will be very happy that at the moment ours looks like Frankenstein's monster should be in it. I know it It feels like it could be another project for you Mel. Like you've done so much. I mean, clearly so that the I guess the aims for The Blend, Special and your podcasts are all very similar. It's like connecting people and helping people and supporting people. What's next? What's world domination of disability, parenting space are you're going to? Ah, well, I'll keep bringing out The Blend. So that's become an annual magazine, which is great, because I love magazines, I really miss working in mags. And I just love putting it together. And working with Edie is really fun. But I think, long term I love the idea of starting some kind of agency, where businesses and disabilities, say can come to us and say we want to make a resource for our community. We want it to look cool, whether it's a magazine or book a podcast, and we help them do that. Help them with brands and connect them with cool designers, connecting you know, with, people they can consult with, adults in the disability space, make sure that they're factoring in a hell of a lot of lived experience, bringing in disabled talent into their projects when they're creating these resources. So I love the idea of yeah, like a production company agency that makes stuff but also helps other people make beautiful resources that showed the full, you know, a bigger, vaster breadth of experience within a certain space, whether it's shoe fitting or a particular disability diagnosis. I just love the idea of having a lot more, you know, hopeful, really sexy looking resources out there for families like ours.

Rina Teslica  48:22

Amen, yeah..

Lauren Fenton  48:26

 Yeah, I'm sure there are so many parents at home listening to this or wherever they are, thinking yes, I want that. I mean, it's even I'm just thinking like, even for B for her AAC device. Like why did he have to have stupid voices like what you know, like, 

Melanie Dimmitt  48:43

Why doesn't apple get behind that? Imagine if Apple made the devices, they'd be gorgeous. I feel like the technology that we have for AAC is like 20 years ago, when you compare it to mark when I might Why is Apple not moving in on this space? Seriously when we're a huge market? It just, It blows my mind and of course it costs about 10 times more for this clunky piece of kit than it would for like a sleek iPhone, so there's a lot of work to be done, ladies, I'm telling you what but your podcast. I must, like the second I saw it I was like yes, because your branding is gorgeous. Your tone is fun. It's so relatable that I was kind of sad that with our recording I didn't get to hear your jingle at the start because like you got that made right, it's the coolest like song.

Lauren Fenton  49:32

that's AE Mak. Shout out for recording that especially for us. We do love it.

Melanie Dimmitt  49:41

It's so cool. Just imagine a parent new to the space and you find this like, bright pink neon podcasts and you tune in and it's this cool song and it's you two, like having fun, like that just will make a world of difference. So I think more podcasts like yours, more. Yeah, attention to branding and making things fun and relatable. I think we need so much more of that.

Lauren Fenton  50:06

I'd love to have a festival where all of this stuff came together. Yeah. Yes.

Melanie Dimmitt  50:13

Like felt like yeah, like some kind of. Yeah. Where are we doing it? Like a Glastonbury?

Rina Teslica  50:19

Yeah, that's

Lauren Fenton  50:23

A Fucking Normal Glastonbury but

Melanie Dimmitt  50:25

But completely accessible. No mud because it doesn't work with a wheelchair like

Lauren Fenton  50:28

yeah, hoists everywhere. It's just gonna be all inclusive, obviously. Yeah, I don't know. I just think it's and it has to be sexy and have lots of really cool bands. And yeah, I mean, yeah, 

Rina Teslica  50:46

Just the dream

Melanie Dimmitt  50:48

We have Ability fest here, which is pretty cool. There's Dylan Alcott, so he was like a pro tennis player in Australia and like Paralympian. I think he started an all inclusive Music Music Festival in Melbourne, called Ability fest, which , Yeah, I haven't been but apparently it's like, fully inclusive there, supporting people there to help. A lot of the bands have disabilities. That's really cool. Yeah,

Lauren Fenton  51:17

Fantastic. We just need to go to Melbourne or he might need to do a UK one or a European one. That sounds amazing. Oh, gosh, yeah, that's it. I have to say, talking to you Mel and looking at everything you've done it. It's really, it's just so positive and uplifting to think that, you know, things are evolving. There are people like yourself who are trying to make things better for all of us because they're producing stuff that's going to you know, make everybody feel less alone and normalise it, make it feel like it's just part of life, having additional needs.

Melanie Dimmitt  51:58

Yes, it's just unacceptable- the resources out there. Like I remember when I first got his diagnosis, a social worker came out to us from the organisation we were linked in with and she gave us a DVD. And you know, this was six years ago, we didn't have anything to play a DVD with. And when we finally managed to play it, it was all about families living with kids with CP and it was so depressing. And that DVD is like the reason of Special. I was like this cannot be ,this cannot be what when we're staring into the future. This thing is like, we need a new DVD. I can't make DVDs. I made a book but we just need.. Yeah, that we need something with hope. And it's something we can relate to. I was like you can't be giving this to your families. And the other things she did was read to us from a children's book about a little girl with curly hair whose legs and arms didn't work like the other children's legs and arms. And she sat there reading

Lauren Fenton  52:53

Oh, Jesus.

Melanie Dimmitt  52:54

Oh, love, like read the room. This is so patronising, and she meant well. This person just going out to new families with a kids book and a dusty DVD and I was like, this cannot be, it's not good enough. And it's parents, it's like you guys saying that this stuff needs to exist. it's not good enough that we're sort of just left on our own with awful Google, which you just need to stay the hell away from. We need, we need better things thrown at parents who are new to this, so they don't think it's the end of the world.

Rina Teslica  53:24

I think it's, what I find really frustrating with the whole world. I mean, the disabled world is there's so much support for our children, they're thrown into like the therapy, this that this the support workers care workers, la la, and the parents are just sidelined completely and I find that, it just it pisses me off basically, it just really pisses me off like I am also here. I also need support, I also don't know what the fuck I'm doing. And yes, of course my child is the number one priority I understand completely but there needs to be more support for parents and stuff like the podcast, the books that just to show that there are others like you that are going through something similar and you're not alone is just yeah, the cherry

Lauren Fenton  54:16

And even just fucking learn my name. I'm not being funny, but that used to like really piss me off. And maybe that's unfair because I think you know, it's about your child when you have a therapy appointment but just constantly like, Mum, What do you think? Mum- are like mum's going to stand down, mum's going to do this. It's like, Come on, just learn my name, please make me feel like I'm part of this too. I'm not just like 

Melanie Dimmitt  54:40

I understand that in hospitals because I'm like, of course they're not going to remember every patient say but- yeah to say that. It's like what you said before, like you know it's a good therapist if they like our ones, they will always ask and how are you going? As well as Arlo, they get it, they get that the kids you know wellbeing is all is very connected to your well being and that this is a family experiencing this. And that's how it has to be looked at. And you're right. I remember that in the early days going to therapies and like, Arlo was loving it. He was living his best life, smiling way. And I was just like, miserable and didn't know, you know, it was so sad. And we need support, like you say, like, once the kids in therapy, they're good that they're having fun, a lot of this high worth, we're just off on the sidelines just dying. So we need we need a bit of love in those, certainly in those early weeks and months, my God,

Rina Teslica  55:32

I remember, it was a physio appointment. And I was super depressed, I chopped off all my hair. And I was like making a statement, like this is, I'm just not okay. And the physio was like really lovely, super, super lovely. Did the therapy and she saw me and she obviously saw the hair and she was like, you've cut off all your hair. And then she put her hand on my shoulder. Are you okay? And then I just like, oh, and then she like put me to therapy, whatever. But if she hadn't asked or made that kind of wish she'd noticed. I mean, that kind of hair short is like a big statement. But still, she was like, What the hell is going on? Are you okay? No.

Melanie Dimmitt  56:16

Yeah, that's when you know, yeah, you're on to a good one. And I find like, once you find that one good therapist, that's when things start turning around. And we found this physio Sarah, when he was eight months old, and she just loved him, got him, asked me how I was, got very involved with our family. And it was like, everything started turning around from that point, because these are the first people you meet in this space. It's so important, everything they say you remember and the way they make you remember and I just wish. We still see her now via telehealth because we're like, we're not letting you go- she's moved to a different city but like we will always have Sarah  as our physio because she is, just was an absolute angel from day dot and made such a difference.

Lauren Fenton  56:58

So important, so nice. Well, is there anything else that you wanted to say about projects that you've got going on Mel or

Melanie Dimmitt  57:07

Just that he's a cool kid, like for anyone who's you know, I guess if you think about quadriplegic, cerebral palsy, wheelchair nonspeaking. On paper, like it looks pretty, you know, like scary bad stuff, but he's just taught me, you do not need to be a walking talking body to have a happy, meaningful life. He's an incredible kid, smart kid, really ordinary kid, in a lot of ways. So I guess if anyone is grappling with, you know, a CP diagnosis. Yeah, I wish I'd had that perspective that even with us, you know, I am now like on Dean Sherman, that wonderful brother I told you about where I'm living my worst nightmare. I was one of those parents who, you know, if I'd known I was gonna have a disabled child, I would have never had children. And I hate saying that now because I would have missed so much and it kills me. But Arlo is the light of my life. I would I honestly would not change him. I don't want to know Arlo without disability. And it took me you know, years to realise that- he showed me, it just took sort of letting him teach me and show me who he is. But he's the best and everyone who meets him just adores him. He's the most popular incredible kid and he, you know, we have gorgeous Odie as well and they have a lovely relationship. So there is certainly so much happiness to be had when your family has a profoundly disabled child in it, which I thought was impossible. But yeah, like I said, we laugh most days, it's really challenging. I'm not gonna sugarcoat that there's a lot of times when it's really unfair, like when he's sick and he misses out on stuff. But I think you know, the highs certainly balance that out and we just get this incredible life and this incredible perspective on the world and I get to meet parents like you and I just have this incredible network of worldwide other parents doing this thing and we have this instant rapport and there's something pretty magic about that. I think.

Lauren Fenton  59:03

Oh, incredible. 

Rina Teslica  59:05

So beautiful. 

Lauren Fenton  59:08

Well, thank you so much for coming on and sharing I mean, I don't know about you Rina but I want I want to jump on a plane to Oz now.

Melanie Dimmitt  59:19

I need to come to you. I miss London so much. Oh, I need to come back sometime so I'll come and visit you and we can hang out in real life. Yeah, sure. Sure. Yeah.

Lauren Fenton  59:31

Beautiful and can you finish then just by telling us your- you've listened to the podcast so you know that we always end with asking our guests for their Fucking Normal, so just short,snappy. What is your Fucking Normal, Mel?

Melanie Dimmitt  59:50

I love how you guys say 'fucking', it's so much better with an accent. My fucking normal is having superhuman strength in my thumbs from shoving food through syringes. I have like Arnold Schwarzenegger thumbs- they are so strong and it is the most, it's like the fittest part of my body is my thumbs. It's completely useless unless you're pushing really thick blends through syringes  and so it's just you know, it's a skill that I've developed over the last couple of years. I'm quite proud. Super strong thumbs is my fucking normal

Rina Teslica  1:00:20

I love, because I could totally understand why. Yeah. I could never develop that. I've always developed that one, with the palm of my hand. Oh, yeah, I've got the

Melanie Dimmitt  1:00:34

Like this... Again, sorry, bad for podcasts, both thumbs gone on the syringe, you get your own you get your groove, don't you, whatever way it is.

Rina Teslica  1:00:43

Amazing. Oh, well, thank you so so much for being on the podcast.

Melanie Dimmitt  1:00:48

Well, thank you guys. It's been very fun. Thank you so much for having me and yes, let's definitely give away some books to the community if you're keen. Well, I'd love to gift a couple of copies of Special.

Rina Teslica  1:01:00

Oh, that would be amazing. Thank you so so much, Mel. Bye, everyone.

Transcribed by https://otter.ai