S2 E11: Parenting on a Different Path: Nicole Bateman chats with Louisa Stanley

In Season 2, Episode 11 of "Conversations with a SEND Mum," host Nicole Bateman chats with Louisa Stanley about her new book "Parenting on a Different Path." Louisa's book brings together 26 stories of parenting children with complex needs. They discuss the common themes and unique aspects of these stories, and Louisa shares her personal journey of parenting her daughter with a genetic syndrome.

Episode Highlights:

• Parenting on a Different Path: Louisa introduces her book, "Parenting on a Different Path" which compiles 26 heartfelt stories from parents of children with complex needs. She explains the inspiration behind the book and the process of gathering and curating these powerful narratives.
• Common Themes and Unique Aspects: Nicole and Louisa explore the similarities and unique aspects of the stories in the book. They discuss common themes such as resilience, advocacy, and the emotional journey of parenting children with complex needs, while also highlighting the diverse experiences and challenges faced by each family.
• Louisa's Personal Journey: Louisa opens up about her own journey of parenting her daughter with a genetic syndrome. She shares the challenges, triumphs, and lessons learned along the way, providing insight and encouragement to other parents navigating similar paths.

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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

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Hello and welcome to Conversations with a SEND Mum with me as your host, Nicole Bateman. Today I am joined with Louisa Stanley and she is a mum and also recently author as well. So yeah, welcome to the podcast. Thank you, Nicole. It's great to be here. I'm looking forward to our chat. Excellent. So first of all, can you tell me a little bit about your connection to the SEND community? Yeah, so I am a mum. So I'm a mum to an eight year old daughter, Anna. Now, Anna was born with a rare genetic syndrome. She got the hot blood. We didn't know for a while or so I confused her as a parent, but also I have created her book with 25 other parents of children with complex needs. So I'm coming to talk to you today about my book, Parenting on a Different Path. So yeah, so that's who I am. Excellent. And you're also a home ed tutor too. I forgot that. I am. So yeah, a teacher for 20 years. I left the classroom. I struggled to balance the life of a teacher with kids in the classroom and also care for my daughter at home. So I, I left the classroom in 2021 and became an online tutor. Yeah. Supporting the home education community. Excellent. I left in July 2021 for the same reason. Lots of connections. Yeah, absolutely. It was just so hard to juggle. You can't give yourself to the teaching world and support your, your child that's got additional needs as well. It was too much. Yeah, I totally agree. And just getting calls, I had to have my phone out in case my son had seizures and stuff and then get a call like, okay, I need to go and then try to find someone. It's not like, when you're at an office or your home, you can just kind of, obviously it's very important things, but you, you don't have anyone Relying on you like children to keep them safe. And I think not everybody understood as well and you've been feeling guilty for leaving the, leaving the school, leaving the classroom, but ultimately you're a mum and your child needs you perhaps more than other children and you're needed unexpectedly and you're needed now. It's hard, isn't it, to balance that so. Yeah, I'm in a much better place now, much better place. So I, yeah, I love it. So I do online tutoring as well. So I can pick my hours, I can do the school runs. So I get to talk to the parents, I get to talk to the teachers and yeah, still do the teaching, which I love, but I do it in a way that works with my life. Yeah, and that's so important, isn't it? I think a lot of us as mums we need, we need that. We need to be able to be a bit more flexible because we don't know when the unexpected will happen, will happen. Absolutely. You just don't know, do you, from one day to the next? What's going on? You're kind of always on edge. You're always waiting for that phone call and Yeah, so being in the classroom, it's very hard to, to do that. So, yeah, I'm much better doing what I am now. Yeah. Well, that's good. That's what we want, isn't it? It's given me time to write the book. I wouldn't have had time to write the book a few years ago. No, exactly. So what was the kind of purpose? behind wanting to, to write this book? So I wrote a blog post for a friend a few years ago, sharing my story, my journey with Anna. And I was really terrified about doing that, opening up and being vulnerable. But actually I found it a really therapeutic process. It really helped me deal with everything and acknowledge that, okay, we are parenting in a different way now. This is it, accepting it and moving forward. And I found that such a therapeutic process. So I decided, it was about a year ago, I decided, okay, I want to, I want to write my story. But I felt like I needed to do it with other people, so I put posts all over social media. I went crazy and I've managed to get 25 other parents. So it's a collection of 26 parents. I've all shared their story. And it's such a powerful book. It just makes you feel less alone. So sharing my story was therapeutic, but actually reading other stories as well, you see those common threads throughout everybody's journey. They're all very different, but the similarities that run through, and the love for the children is just immense. Yeah. And it shines through. And it's been hard. I've had to try and get the tone right. Yeah. But every, yeah, it's just so powerful. It's so inspirational. Everybody's got their own journeys, but very similar challenges. Yeah. Yeah, absolutely. And it's so nice, isn't it? And I mean, that's the purpose of this podcast as well to, people can listen or people can read your book. Kind of depending on, what you're doing. How people process information best, what's come from the book is there's a Facebook group as well. So there's a Facebook group that accompanies the book called Parenting on a Different Path. Yeah. The support that people are getting in there is, is wonderful because they're connecting with each other. It's connecting. They can ask questions. They can say, oh I live in the same location as you. Why don't we meet up and have a coffee? Or are we going through this struggle at the minute? Can anybody else relate? Has anybody got any advice? And I think it's, it's so important, particularly in, in the parenting world that we're in, that we do find those links and find those connections because it just, it just gives you that comfort that, you know, You don't have to do it on your own. Yeah, absolutely, and that's so valuable because there's so many of us that feel that, like, we are alone, especially if we're trying to get the support and we're getting dwarves in our face it's fights, isn't it? A lot of these fights are similar. Fights for school places, fights for diagnosis, fights for EHCP. I know you know these fights as well as many of us. just to understand that it's not just you going through that. Yeah. For somebody else to help you and give you advice or signpost you to a particular organization. There's a whole collection of charities and organizations that people have recommended in the book as well. So it, it's a bit like a guide, a support guide, as, as well as. You know, that comfort as well. Yeah. Yeah. It sounds, sounds great. Could you share with us a little bit about your journey with parenting Anna? Yeah. So again, the pregnancy, well, I always wanted a child. So you're pregnant, you're absolutely thrilled. And then 12 weeks we went for our scan and suddenly like, called in and then noticing that things aren't quite going the way that you want it to go. She had excess fluid around, around the body. So it was predicted that she wouldn't survive the pregnancy. So we're then scanned every two, three weeks. So you're having to kind of carry on with life, carry on teaching, carry on with day to day life, not knowing from one scan to the next, whether that, that baby is still there, which was heartbreaking. You can't kind of accept really that it's going to happen. And then a miracle happened and she kind of, you know, Kept growing and kept doing really well and everything seemed fine. Then they were worried about how small she was, so they decided to induce me at 37 weeks, multiple term. But then from being scanned all the time, suddenly I'm in hospital and the care was appalling. We were just left. We were told it's our own fault having a baby in October. That's their busiest time of the year. So at that point, I'm like, what? This wasn't, you know, I didn't plan. This is, this is, this is what it is. Don't, don't put the blame on me. So, yeah. Yeah, we had terrible care, and she came out face first, so she faced presentation, she was all battered and bruised. So, it was, it's been a rollercoaster, so from that 12 week scan, it's been up and down. So she wasn't breathing great, so she was taken straight to neonator, we were there for 10 days. So she was doing really well, sent home, and everything was fine again. So you think, okay, nothing, nothing bad happened. You know, nothing untoward. She's our first child, she's our only daughter as well. So, you don't know as that new mum, whether this is normal. I did go to all the baby groups, but then I began to see that Anna wasn't quite developing the same way as everybody else. Yeah. She wasn't interacting in the same way, her body wasn't moving in the same way. And those alarm bells start to ring, I think you, you know, as a mum, you get that feeling, don't you? And I was just getting something's not quite right. We had a great health visitor who puts in touch with their paediatrician. And she wasn't diagnosed until she was three. So, they, they thought it was some genetic syndrome, but they didn't know what, we were told. We may never know what it was going to be. So we were involved with a swan organization, which were really Are you involved with swan? Yeah, So there's an episode earlier in the season with with someone from Swan UK. So Anna was a swan for a good few years of her life. We still think of her as a swan. We're now swan graduates. Yeah, they were, they were brilliant in supporting us on our journey. And then when she was three, she got the diagnosis of Pitt Hopkins syndrome. So four in a million have this syndrome. We've been lucky that we've met up with other families in the UK. But again, you see, even when you've got a diagnosis, all those children are different. So you get a diagnosis and the diagnosis was annaturity. So you get it, you see it on paper and you think, yeah, that's, that's her. But all these children are different and it's that comparison you look at these children. You think well, maybe Anna can do that in the future Maybe she'll be able to do that. But we've learned that Anna is Anna and she will do what she wants when she wants to do it Yeah, it's lovely to have that community there To ask questions and you know to get that Get the support from other families, but she's doing really well. She's eight now. We were told she probably would never walk and she's walking independently quite a bit. Yeah. So yeah, she's doing really well. Yeah, that's great. Yeah. It's like being a rollercoaster. I talk a lot about the rollercoaster. It's been, you feel like you can, you're always waiting for that dip. So when it's brilliant, it's brilliant. She's doing really well, but you're kind of always on that edge. You're always wasting. what's going to happen next. Yeah. I feel that. Yeah. He was just like, Oh, okay. You know, for us, it's, it's seizures. It's like, okay. He's gone like two weeks without a seizure, which is like great. Yeah. Like when's the next one going to come? Cause you know, it will. And that's the thing, but then I've managed to flip it around that when it's. when it's bad and things are, you know, going through a challenging time, it's knowing that it's going to get better. Yeah. And I think it's just flipping those, those thoughts around that. Yeah, we are going to have tough times. That is the nature of nature of parenting. It's just a little bit more complicated, but you are going to have challenging times, but those good times will come again. And it's about appreciating those good times. learning to deal with those challenges. And yeah, it's not always easy at all, but it's just finding strategies and ways that, that work with your family. Yeah, exactly. And that, that rollercoaster I'm sure many listening will resonate with because, it's sometimes the uncertainty, especially when anna had syndrome without a name and all of that. And even like you said, when you did get the name, it's still very rare and there's unknown things because all our kids are individuals. They're amazing individuals. And they will, yeah, they will develop in different ways. So it's always a learning, a learning experience. And I think that diagnosis day was. It was really important actually in, in the last eight years. And me and my partner dealt with that in very different ways to him. He was going down the research route, right? We've got that. How can I solve it? How can I fix it? Whereas I was like, okay, this is, this is Anna. I just accept it and we move forward. But you do go through those. those feelings of grief, you're grieving that child because you're told so often that, okay, maybe she'll just catch up. She's, you know, she was, yeah, complications that, you know, during pregnancy, she had a difficult birth. She'll, she'll catch up. She'll, you know, do things in her own way. And then you have to then accept, okay, no, this is, this is it. Now we've got Anna, she's got Pitt Hopkins syndrome. She's going to need care for the rest of her life. But you do, you go through that grieving process. You get angry, you get upset, you get frustrated. You're confused and it's yeah, all those emotions and you have to find ways of Dealing with that and me and james dealt with that in very different ways he was like bowing his head into let's go to google. Let's find this go into research foundation It's yeah, so then you've got complications then you've got that relationship those relationships as well that you have to deal with on top parenting animals as well, so yeah, it's a, that was quite a big thing and that's taken us a good few years to kind of work through, work through that. Yeah, absolutely. That's, it's a really good point there with the, the different kind of responses from parents we have that in our house as well, you know, with different things and understanding. I'm more like your husband. And just like, right, what can I do to, you know, to like, you know, and I think it's sometimes that acceptance. Like I had to accept, I cannot stop his seizures. he has got drug resistant epilepsy, and so the likelihood is to be seizure free for, for a long time. It is, it's not that likely. And when you hear that,'cause you still wanna have hope, you still wanna be like maybe we'll try another med and a combination and we'll add that in and then that will be a, he'll stop his seizures and things like that. And as said, mom, you wanna do everything possible, don't wanna control, But then I was like, actually, I know I can't do that. But there are things that we can do to make our lives. And our kids lives, more enriched, better, you know, with, with my son, he has sensory processing differences and, and the emotional regulation he finds tricky. So I was like, right, that's why I went into, the SuperSensorySquad starting those things to be like, Actually, these are tools I can help with. I can't stop the seizures, but I can help in other ways. Isn't that amazing, Nicole, that our children have given us this new life that's much better and supporting other families. And that's why I feel that I wouldn't be doing what I'm doing now. I wouldn't have written this book. Published author. I wouldn't be supporting the home education community doing online tutoring I've got time in my day to sort out the house and the cleaning and And to have that fulfilled life, these children have given us this life, and we're so, you know, we've got to be so blessed and so grateful for that. Absolutely, it's such a good point because you just, yeah, I'd still be teaching, you probably would still be teaching, yeah, it's different now. I think that's what, that's what comes through the book, it's, These children change our lives. Yeah. They change our lives, and they definitely come with challenges, but they are so rewarding. And, and that love, it shines through the book. Honestly, I've written one of the stories, but there's 25 of the stories, so I can really sing its praises, because it's not, it's not just my book. The stories are so inspirational, you see the challenges that these families go through and that love and the support that they then give other families and other people is just wonderful, it's so inspiring. And there's stories in there stories of epilepsy, there's other drug resistant epilepsy in there. And there's muscular dystrophy, there's Down syndrome, there's rare genetic syndromes, there's so much, lots of autism, ADHD. And you see, despite all these challenges life can be amazing. Yeah, absolutely. And that's, that's great hope for people to, to hold on to, taking that pain and that, grief that sometimes comes with things. And, turning it into a purpose to, make that difference. I think a lot of us, you and I both, are doing that and living that and trying to, and many others, aren't they? I think if other families see, okay, I can make my life positive life. I think it's about showing that. It's about giving parents a voice. That was the main aim of this, it's twofold really. It's, the book is to give parents a voice, rather than hiding in the shadows and kind of battling through on your own. It's allowing parents that opportunity to talk, and I want to get these voices out there. I want to, I want to speak to MPs, I want to speak to local councillors, I want people to understand This is what our lives are like, and there's things that society can do to support us because there are battles, and there are lots of unnecessary battles that people need to be aware of, and the right people need to try and support us with that. Yeah, excellent. I totally agree. I'm like, yes, let's do it. Let's change the world. We can do it. Exactly. Exactly. So where can people find your book? So Parenting on a Different Path. It's on Amazon. I've also got my Facebook group, Parenting on a Different Path, which is a community. All the authors are in there and other people that have can relate to our journeys as well are in there. And I, on Facebook, Believe in Bloom Education, that's my education business where I support children lots of children who are outside of school who struggle with the, the traditional school curriculum. So I support them with lots of personalized learning through online tuition. So Believe in Bloom Education or parenting on a different platform. Excellent. So yeah, definitely go and follow Louisa and and, and Believe and Bloom as well. Believe and Bloom, Believe and Bloom, Believe and Bloom, Education. Education. I can't get my word right. Lots of, lots of, yes. I like my alliteration. Yeah, yeah. Well, so do I. It's the Super Sensory Squad, obviously. It's a teacher thing, I think, isn't it? Yeah, exactly. Thank you so much for sharing a bit of your journey and about the book and everything with us. I definitely, I'm sure that, it's already helped people who have read it and it's going to make that input impact a positive impact that you want. So thank you. Thank you so much, Nicole. Thank you. That's all right. And remember that every Wednesday there is a new episode of Conversations with Send Mum podcast. Please do like, do share and leave us a review because it's so helpful for people to be able to find our podcast. See you next week.