S2 E7: Speech Delay, Tongue Tie and Social Media: Nicole Bateman chats with Jenna Farmer

In Season 2, Episode 7 of "Conversations with a SEND Mum," host Nicole Bateman engages in a conversation with fellow mum Jenna Farmer, owner of Mumernity. Together, they explore topics ranging from speech delay and tongue tie to the power of social media advocacy and addressing parent bashing.

Episode Highlights:

• Journey Through Speech Therapy: Jenna shares her journey of navigating speech delay in her son, reflecting on the challenges and the triumphs of early speech therapy interventions. 
• Impact of Tongue Tie on Speech: Nicole and Jenna delve into the topic of tongue tie and its impact on speech development. Jenna shares personal experiences and insights into identifying and addressing tongue tie in her son, highlighting the significance of seeking professional evaluation and treatment options.
• Power of Social Media for the SEND Community: The conversation shifts to the role of social media advocacy in the SEND community. Jenna and Nicole discuss the positive impact of social media platforms in raising awareness, sharing resources, and building supportive networks for parents of children with special educational needs and disabilities.
• Addressing Parent Bashing: Jenna and Nicole address recent comments made by individuals on social media platforms, highlighting the importance of empathy, respect, and support within the parenting community. They advocate for kindness, understanding, and solidarity in navigating the challenges of parenthood and advocating for children with SEND.

Follow Nicole on www.instagram.com/conversationswithasendmum for exclusive peeks to weekly episodes. Please do send feedback and rate this podcast to help it reach those who would benefit.

Check out our sponsor The Super Sensory Squad who support kids in understanding the eight sensory systems and emotional regulation using their penguin squad at: www.thesupersensorysquad.com and www.instagram.com/thesupersensorysquad

Transcript

0:00

Hello and welcome to Conversations with a Send Mum with me as your host, Nicole Bateman. Today I am joined by Jenna Farmer. She is a mum and she runs Mumernity and she is also a fellow podcaster. So welcome. Hi, thank you so much for having me. That's all right. So first of all just wanna share what is your connection to the SEND community? So I have a son who is just turned five and he's autistic. We started our journey a few years ago talking about speech delay on like TikTok and Instagram. And then we went through the pathway of having an autism diagnosis as well. My slip also has tongue tie and where. looking into a dyspraxia diagnosis, but we don't have that anytime soon. So we've got a few different things going on. Okay. So yeah, thank you. So lots of, different links there, focusing on first of all, I suppose, right at the start of your journey however many years ago what were some of the things that maybe you noticed or that you were feeling at that time? Well, it started before my son turned two and I just noticed that his speech wasn't really progressing. He wasn't able to communicate in different ways compared to his peers. It was a little bit hard because we was in lockdown. So it was difficult to know. How much was to do with that and also what his peers were actually doing because he wasn't going out much but we started to definitely notice that as he got towards his second birthday that he wasn't really speaking and that's sort of how we started that we sort of had some private speech therapy that ended up being a longer journey than we had thought but yeah it was mainly in the beginning sort of his lack of speech and communication which is where we sort of started to think perhaps he had an additional need. And what are some of the kind of challenges that you've faced along the three years, yeah. Yeah, we've had a few different things. Just before he turned four, it was found that he had a tongue tie, and it was so frustrating that that wasn't picked up earlier, because That would have really, although it wasn't the cause of all of these issues, cause obviously he's still autistic, but it was definitely something that was making his pronunciation much more difficult to understand and the clarity of his speech. So that wasn't picked up until much later, which meant that we wasn't able to have. surgery on it until fairly recently. And because it was left so long, it's not necessarily a quick fix because of how long the child has been tongue tied. So that was one of the challenges. And another challenge has been schooling. So we're thankfully in a really good school now. But when my son started in September, it was just horrific really. It was a really Terrible school and just was really the opposite of inclusion really. So just as I sort of thought I'd got everything sorted, starting school, getting my life back a little bit. I had to take him out of school because he just hated it and they just wasn't getting him at all. But thankfully, thanks to the power of Facebook, I literally went on Facebook and I was like, right. Who in this area has got autistic children? Where are you sending your kids? They all told me you've got to send him to this one school. Thankfully they had an opening. It was a mainstream school, but they've just got a really good reputation. And yeah, he absolutely loves it. And we've gone from strength to strength since Reno. Yeah, that's amazing. And, and that impact, isn't it, from, from that being in that school where actually he wasn't being supported to now, that's a massive win that he's now in that school and being supported, for sure. That's so good. Going back to the tongue tie thing, because I think it's important. So tongue ties, my son had tongue tie, so he wasn't feeding well. And I, as a, this is slightly off on the tangent, but very relevant to mums generally as well, because, felt like I was doing something wrong, all of these things for feeding. And actually it was a tongue tie and I definitely think that every baby, should be checked. to know for that penta because like you said because for your son it was picked up so late. It must be physically harder for, for the healing and everything like that as well. Yeah. Well, and the, the studies show that, that there is probably a chance that my son's tongue tie will reattach probably because of how long it's been left, it's obviously a lot harder to get like a 4-year-old to crop. Right. As opposed to a baby. And the second it was cut, I thought that like he would be absolutely fine, but he's had to almost learn to reuse his tongue again because he just wasn't. Sure of how to do it and he still has some support in school with like his feeding and things like that because he was so used to not using his tongue properly to eat and things. So, although my son's probably quite a severe case, I remember when the doctor saw him it was quite a severe case. It is really frustrating, I think, the amount of people who are told that a tongue tie won't impact anything, just leave it be. Because I always give the example, like, if you're trying to talk, and your tongue is literally stuck to the roof of your mouth, how can you tell me that doesn't have any impact on speech? Because when the doctor cut his, he literally like gasped because it was literally stuck to the rear of his mouth and it just like leapt into action. It's a bit like ridiculous really, remembering. So it's like, the number of people that told me it wouldn't impact. And of course there will be children with mild cases and things like that. But yeah, when it is literally rooted to the nose for that long, it really did have such a big impact. Yeah, absolutely. That's a massive, yeah, I can imagine. You're trying it. Yeah, I'm like, go on, go on. Everyone listening might be like, oh yeah, let's try this now and see, how it is. So yeah, you were talking about the, Facebook and, the power of social media sometimes. And you've created a community, haven't you? Like, from TikTok. And then tell us a little bit about, like, Mermernity and, because this may be very useful for some people who are listening. Thank you. Well, it was really just me trying to navigate this journey, really, you know, I think I got all of my advice from social media. And so I just started posting on TikTok and Instagram at that handle at Mermernity, just sort of sharing things that work for us, but also honestly, just sort of my frustration at the system a little bit. often poking fun and sarcasm and just trying to create a bit of light relief because it can be really stressful and sometimes you are in these meetings or paperwork and it is almost comedy in some ways the things that you're saying so i thought okay what if we just turn it into comedy it doesn't really take much of a stretch to turn it into comedy sometimes i did a tiktok yesterday on the joe frosty bait i mean that was she handed that to me on a plate really you know the things they say you like Is this a parody? And then you're like, no, okay, I will create a parody from it. I haven't seen your, I've seen her comments and just been like horrified. I commented, I think people with a following or, some influence over people, they have a very, important job to not spread misinformation. Yeah. It was like Joe Wicks or something with ADHD. And now Joe Frost with, well, I think she said neurodivergent conditions, didn't she? Right. So she was like any and it's, yeah, it's just so frustrating. So it's good that Good that you are kind of countering those. And also, yeah, we have to laugh sometimes because the fight and the struggle that we sometimes go through to try and educate people to help them understand, actually, no, like I commented with the facts, like for my son, it's a Y chromosome and, that then links in. And so it's genetic, causes. Literally has nothing to do with screens. It's just part of the DNA. In my case, we didn't, have genetic testing, but I've talked about this on Instagram. I give zero thought of my day as to what caused my child's autism. So if I'm not worried about it and my child's autistic, what are you worried about it for? How does it impact you in any way? You know, we're just getting on with it and it really baffles me that people need to come into a debate that haven't got the lived experience of it. It's just absolutely baffling. Yeah. What's it even got to do with these people? It's really, really crazy to me. You know, those parents are just getting on with the day to day, and they don't need another stick to be beaten with, and that's all of all this stuff is, it's just literally, how else can we make parents feel bad? It's the same with speech delay. I mean, the number of people that would say to me, they would say it was quite innocent, but they were like, oh, my child's really, speech is really advanced, because I talk to them a lot. What do you think I do with my child? What do you think I do? And it's just little things like that. Which sometimes, you know, I think people don't always get. But actually you have a, I'm not expecting everyone to, do a degree in autism. But it's just little things to understand that actually, the little comments that people are saying to you on a day to day, really make a difference. And these little comments about, you know, the cause of autism, it's just not needed. Yeah, absolutely. And you're so right. It doesn't matter why. I mean, we just, as a side note, we were looking at epilepsy with his uncontrolled epilepsy, and they were looking at genes. And then it was just a side thing that they were like, we haven't found a gene necessarily yet. We're still going through the genome sequence for the epilepsy cause to then try and work out treatment options. But they were like, Oh, we found this. And we're like, Okay, that was just a, yeah. side thing, but you're right. It's literally just making comments, especially on social media, it can be used for good, for absolutely good to bring that community together, but it can be used in the wrong way for people if they're spouting misinformation. So it's good job that we both have. Great real life experiences podcasts because what's your podcast? What what is it? Yeah, it's much newer than yours. It's just a little thing that I've started It's called not another leaflet. And I think if you have a child with additional needs, I probably don't need to explain the name to you Yeah I think that was one of the most frustrating points over the last few years that you would go to these appointments and you would just either get a form to fill out or a report or a leaflet and there is just very little of the day to day support. So my plan as it grows is hopefully that people can listen to it. Whether they're going through a diagnosis or whether they're, struggling with a certain aspect and they'll be experts and parents and replace that sort of community that they're just not getting. Even if they do get a diagnosis, they're not necessarily getting that community and follow on support. Yeah, absolutely. It's so important, isn't it? And if you hear someone, if you hear someone and you're like, oh yeah. They get it. they've been through that as well and then these are some of the things that they did. Yeah, I think it's so powerful because I know that for me, you know, even with. people around me that are, I've got nice friends, family, etc. Sometimes when you're in it and when you're fighting the local authority or school to support my kids needs, you just need to speak or offload or like, listen to another parent who like, literally is, It's been there and done that and has those frustrations. Exactly. And luckily for some of the issues that we talk about now in general, but I have come through the other side a lot, but it hasn't stopped my need. I'm always really conscious. I never want to like brag or anything like that, but I do post a lot of videos of my son side by side for people to just see what progress is possible with the right speech therapy, and I hope it always comes across as that. Obviously I'm really proud, but I remember when I, he wasn't speaking, I would Google like, you know, I would, I would change it every month. So, like 23 months not speaking, what happens 24 months? And I would just devour these stories because I think the one thing that you cannot do, whether it's on a podcast or anything like that. is just know the future. And I think that's one of the hardest things. So, I'm still very much trying, campaigning for people to get speech therapy even though my child doesn't really have it anymore because there's still, huge amounts of people that have just got no idea what the future looks like. And I could remember those days and it was, it was really, really scary. Yeah, absolutely. And that's so good, isn't it? And we've been through it. You're still passionate about making that change. And if we all, you know, those of us who are passionate, if we join together and we can make that bigger noise and try and make that change, which is really, really good. So, those listening, who maybe are in that state of like act right now, that overwhelm, what kind of message of hope and, things that you can share with them? I think there's two things. I think the intervention, early intervention really does work. The problem is that for many people, it's just a phrase, early intervention works, but we're not going to give you any early intervention. So I'm always aware that I'm coming across as a place of privilege that I could pay for private speech therapy. And, you know, it probably costs us like 10, 000 over several years. So I'm well aware that it's easy for me to say that like early intervention matters, but, even if it's, trying to find online or I know someone's fit service will give you just an assessment, you know, trying things for that early intervention. Because one thing I really don't love is where, parents are worried about their children not speaking and they'll get lots of comments like mine didn't speak before, just wait, just wait. And it's okay to just wait, it's for some children. But if you get that early intervention in, there might be some children that actually just waiting isn't good enough, it's not going to work necessarily. I always say like, if you get the early intervention, even if it's fighting your health visitor, a lot of health visitors will say they won't see you till three, it's not true. My private speech therapies, wrong with the NHS themselves and got them to go back to the house visitor to change their mind. It doesn't make any sense as well because, you know, they might say you can't be put on the list till two, but you're not going to get seen till four. So I think the biggest takeaway is to just not delay, because if your child then, you know, does start speaking overnight, which it happens to lots of children, I'm not saying it won't, then all you've done is maybe, been put on a list or you've reached out for a bit of support. So, It's not trying to scare Munger, it's just making people realise that, you know, I kept wanting reassurance and wanting reassurance, and it got to the point where I don't really want reassurance anymore, I just want to take action. And as soon as I started to take action, you know, that's when my son's speech really flourished. And so some It will be different. You know, we tried Makatan and we could just not get on with it at all. So we use visuals. And as soon as we use visuals, my son's speech just really, really expanded. It's, it's really about just trying to access that early support. I think as well, it's really hard, but. Realizing they really can change so quickly. So it's not about I'm ex behind or comparing to other people. It's so interesting, all these people who I've met on this journey and you couldn't really predict where those children are. I used to find it so interesting, I'd go You know, I'd go meet with the mom and maybe my son was sort of speaking and hers wasn't but mine You know had 50 words and and then he'd meet again and hers had jumped over mine and not that I was keeping a comparison But it was so interesting like some were slow and steady Like my son was slow and steady for ages some had a massive jump Some went up and down up and down. And so I think that that is the biggest thing. It's Understanding that you can't you can't necessarily compare. It really is just your child. But I think the early intervention, is a really big one if you can access it. Yeah, absolutely. And I wish that what I wish for the general system, education, health, with mental health as well, if a lot of places took on that proactive approach, Yeah, long run. then we'd all be better equipped, the children would be better equipped and like, supported from an earlier age. but unfortunately a lot of it is reactive and waiting and seeing and, and, and things like that. Look, I had to turn comments off of TikTok the other day within like 10 minutes because, I posted that, you know, there's these generation of people. I don't know how old your children are, sorry. How old are your children? Seven and five. Okay, so funny. You know, you've got these generation of five year olds where. There was a lockdown and you couldn't even speak to a health visitor on the phone. I still remember going to the children's center once and you could go to eat out to help out, but you couldn't go to the children's center. It was locked up. And then they're surprised that this generation of children starting school aren't party trained and aren't speaking. And then it's how can we take that back to the parents? And it's like, you literally left this generation of children. And of course And I had to turn it off within 10 you expecting everyone to part your drowning child? No, but it doesn't take a rocket scientist that, you know, those parents would be able to call a health visitor and go, you just got 10 minutes. You know, I remember before lockdown, I could walk to the end of the road and every two weeks there was a health visitor in a drop in that never came back. It gets reported, but no one correlates that between the complete, like, decimation for young children, so, it's so frustrating. Yeah, absolutely, a lot of passing the, passing the baton off. Yeah, it's like, how can we blame parents who get any better? I don't know any parent of a five year old that's like, I'll just wait till you start school until I potty train. Yeah, I mean, we struggle to potty train, I know lots of people that struggle to potty train, but, We were trying, we were really trying with a little help, so it's really, yeah, it's a very frustrating narrative. Yeah, absolutely. And we want to banish narrative, please. Definitely. Well, thank you so much for joining us. And yeah, definitely, if you want to, connect with Jenna, where's the best place to connect with you? So you can follow me on TikTok and Instagram at Mumernity, which is a little bit strange to say. So it's mum and then E R N I T Y, so it's a play on maternity and mum. And then you can listen to my podcast, which is called Not Another Leaflet. Excellent. Good. So yeah, thank you. I will be back next Wednesday with another guest. I hope you have a lovely week.