Signing, APD and PTSD: Nicole Bateman chats with Shelley Ensor

In this empowering episode of "Conversations with a SEND Mum," host Nicole Bateman engages in a heartfelt conversation with Shelley Ensor, a passionate SEND Mum and the owner of Little Signers Club. Shelley shares her journey as a parent advocating for her child with Auditory Processing Disorder (APD). The conversation delves into the world of signing and the fight for the rights and needs of children with additional needs.

Episode Highlights:

• Auditory Processing Disorder (APD): Shelley opens up about her experience as a SEND Mum navigating the complexities of Auditory Processing Disorder. She shares insights into the challenges faced and the importance of raising awareness about this often misunderstood condition.
• Signing as a Communication Tool: The conversation explores the significance of signing as a communication tool for children with additional needs. Shelley discusses how signing has become an invaluable means of expression and connection for her child.
• The Fight to Advocate: Both Nicole and Shelley delve into the challenges and victories that come with advocating for a child's needs within the educational and healthcare systems. They discuss the resilience required in the face of hurdles and the importance of building a supportive network.

You can access a code for a free signing picture book from Little Signers Club on the 'Conversations with a SEND Mum' Patreon Community. You will find additional resources in our Conversations with a SEND Mum Pod Patreon community  at patreon.com/ConversationswithaSENDMumPod . Join the community for only £3.50 and get access to bonus content from our guests and sponsors The Super Sensory Squad, exclusive episodes and a monthly zoom chat.

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

0:01

Hello and welcome to Conversations with a SEND Mum, hosted by me, Nicole Bateman. Today, I'm joined by Shelley, who is a SEND Mum herself, and the owner and founder of the Little Signers Club. So, Shelley, welcome to the podcast. Hello, and thank you so much for welcoming me along here today. Excellent. So, can you start by telling us a little bit about you and your connection to SEND, please? I've been a SEND mum for 17 years now. That's how old my eldest daughter is, and I have three children all together. So my journey actually into SEND started off quite, at quite a young age for my daughter. We had a terrible road crash when our, she was 11 months, and I was actually seven and a half months pregnant with my second daughter. And at the time, obviously, it was very traumatic. And we didn't really think much of it, but fairly shortly afterwards, at around sort of two, two and a half, it was noticed that Ebony, my daughter, wasn't really meeting milestones as expected. Now, she had been a failure to thrive right down to the ninth centile which had obviously been its own journey with silent reflux and other complications along the way. But it was really from sort of two, two and a half that we started noticing that things weren't quite right, but we couldn't pinpoint it. And that started a very, very long journey into as I'm sure most parents and professionals listening on your podcast will understand, you know a very intense journey of circles within circles and misdirection. And eventually we got there, but it did take us until she was nine to get a diagnosis. And that is of auditory processing disorder at a level which is classed as hearing death. Wow. Yeah. So that nine. From two till nine, seven years. Wow. That's, yeah, that's a lot. And, and that's the thing, isn't it? Like you said, many listening will have gone through those different circles, jumping through those different hoops, to try and get that support and diagnosis. So how did Little Sinus Club then come about? I think I can make a connection. You would think so, but it's not quite as straightforward as you might think from hearing my story. So, in actual fact, I was made redundant when I was pregnant with Ebony, so that would be 19 years this year. And at the time Dr. Joseph Garcia was UK, so babysitting was all over MSN, Front News, and things like that. And because I'd been made redundant, And because I was pregnant, I started looking into it. And I actually then went to franchise for another organization, which then subsequently went into receivership. So Little Signers Club started in 2010, but I've been using baby signing and teaching baby signing since 2005. So the irony, I mean, is it irony? Is it coincidence? I'm, I'm not a big one on coincidence. I always think there's a reason behind everything. So in actual fact, my daughter has signing on her side right from birth, right from before we even knew what her diagnosis was which is, is just incredible, really. But obviously my interest deepened and developed as we went through. our journey, especially when I was joining some of the APD forums who were advocating not for using signing because children with APD have to learn to get along in the real world. Wow. Yeah. Wow, that is amazing that you already had that integrated, that's interesting. Cause that, that links in with my next question really about the kind of the misconceptions that you've kind of come across within your journey and some of those things like in that forum saying well you should just learn to get on in the real world without signing how do you deal with those kind of things i'll be honest i have a very long journey with ptsd and i do tend to keep my head well below the parapets i have found it very hard to put forward other ideas, especially in a world that isn't always receptive to the way that I have seen and worked things out for myself. I'm more confident with that now, but I did an awful lot of smiling and nodding and just carrying on anyway, because I know that. Baby signing, signing, signing with speech works for all children, regardless of their hearing ability. It meets their needs. It helps them communicate their needs. And as we all know, you know, learning to speak is really, really, really hard. But for children with auditory processing disorder, and you know, there are correlations because it's comorbid with ASC and other conditions, very much so, is signing completely cuts through the URL. You've got a visual cue for what is happening. So whether your child chooses to sign back to you or not, they are still having that visual cue of what is needed. I do advocate for signing with children with auditory processing disorder. And I, I think one of the things that I found hardest is, is just two years ago, I found out on one of the the deaf signing Facebook pages that a child had gone to deaf school. And, and was given that as their education opportunity and because it wasn't discussed in the APD forums, because signing was frowned upon, I never knew, I never knew that that was even an option. And that's actually quite upsetting for me as, as, as a parent to, to not know that that could have been an option that, you know, deaf schools equally support. Children who, you know, do you have hearing impediments, but they're also children like my own child who, who isn't deaf and who can hear, but has this processing disorder could have benefited from that. So, yeah, it's it's a difficult one. We've gone our own way. But I do think that information needs to be more open. Yes. Yep. Absolutely. Because if we know the information, then we can make those informed decisions. Whereas if we don't know those, the information, we have no idea what's available and that You know, that is, that is the case in a lot of the services and things like that. So it's great that, you can share that information right here, cause that might actually help someone listening and, and things like that. And we just need to be vocal about the different options and the different support available for our kids. Absolutely. We loved, I loved baby, I did baby sign with my son. And his first, his first sign was milk, like that's what he did, that's it, we were always on about the milk and more, and different things like that, and yeah, it was so helpful for that early communication as well. Definitely, and the absolute wonderful thing about signing with children. is that it meets needs at all ages. So you were just obviously saying about milk, milk tends to be a first sign, you know, for many, many, many families, more graduates into a gain as, as babies become toddlers. And I think the, the one thing that I absolutely love about signing with little children is the window into their world. Communication is really hard. Learning to talk is really hard. And when you know that 93 percent of communication is non verbal, that's an awful lot for all children, even some adults to pick up on. So the more support we have in place for communication attempts, the better. And signing is. You know, easily accessible, you, you literally just need your hands and maybe a little bit of Little Science Club magic or magic from somewhere else and you have just this wonderful opportunity to share in your child's world to understand exactly what they need before it becomes a problem. You may well obviously have seen that we're seeing much more about, behaviour is communication, but I'm, I'm really an advocate for communication before behaviour and that's what the beauty of signing it really does help all children communicate at a level that is easy for them and for their grown ups to understand. So as you experience for yourself. And as thousands and thousands of parents have, done as well. So I really do think it's something that should be open to everybody. And I know that the BSL GCSE is due to come into schools in 2025. And I'm really hoping that we're going to see a bottom up approach to that so that we start seeing more signing. British Sign Language in schools and in nurseries and in early years settings, because how can children learn to love a language if they don't get to experience it sooner? But the, the knock on benefits of that, of course, are confidence, communication, curiosity and supporting all children to access the curriculum, which can only be a great thing. Yeah, definitely. And I can hear your passion about that. And it's great. I, when I read about the, the GCSE I was like, that is so helpful and so useful. I know that my daughter in her preschool setting, she definitely did a lot of signing there, which is great. And she enjoys it. And she comes and tells me different things. And they do it in reception as well, actually. She says, this means this mummy and things like that. And they love it. So like you said, that bottom, bottom up approach starting young and then building up just really does. They do engage with it so much. I've seen that in my kids as well. So what, what do you think are the most kind of crucial aspects of support that send families, kids need, in your opinion? Honestly, from my point of view, it's really hard to say. My daughter is a child who's very much slipped through the cracks with you know, the NHS and education systems. They can't fix her. So therefore, there seems to be a reticence to support long term. She's a child who needs, for example, weekly speech, language and communication intervention. She was offered once a year with the NHS. You know, trying to fund something like once a week intervention. Yes, we, we get DLA and now PIP for her, but it isn't enough. She also needs occupational therapy support on at least a monthly basis for fine motor skills and, and other things. Again, you know, there's only so much budget and. There's only so much help. We all know that the NHS is chronically understaffed and underfunded, but when there's no interest in supporting children like my daughter, because there either isn't the expertise or there isn't the knowledge or there isn't the, you know, she's, she's a child who is supported at home and therefore doesn't need an intervention because there are children who need it more, it very much leaves. Children like my daughter behind and the parents, you know, me and my partner who support her floundering, what do we ask for? Where do we go? Where are the signposts? You don't know what you don't know. I still don't know an awful lot of what could have been available for us. You know, just going back to deaf school for children with APD. I would have loved a therapy dog for her, you know, think things like that. And as she becomes a young adult, a vulnerable young adult at that. There are different conversations to be had. How do we support her moving into adulthood and into the life that she wants to live? And again, not knowing the services or, or where to look. And I really do think for all SEND parents that there does need to be a very cohesive. You know, if you, if you know a condition, or even if you don't, you know, these are the difficulties that we're experiencing. This is a list of people who can help you. And these are the grants that are available. And these are the people that you should be talking to. And You know, real proper supportive help. Send parents are chronically under supported and it's well known. I mean, I have PTSD from my road traffic accident, but send parents, you know, they have a similar thing because they're constantly being undermined. They're constantly being. They're constantly having to fight and fight and fight for things that if they had just been provided in the first place, because they are eventually when you get to court or just before court, why, why do that? Why put people through that? And so that's not really very helpful, but I think we all feel that struggle of, of why do you put us through this? Do you think we're lying? Do you really think that we are going through this amount of pain to lie to you? I don't get it. I really don't. No, I feel that pain. I feel it, like, I totally agree. And many listening will also feel that because, like, we're going through the EHCP process, my son, that's been delayed and delayed and delayed. We got a no to assess in July. the day before schools broke up then everyone went on holiday. I was chasing the whole summer trying to get through to the council, LA, all of that, trying to get someone to give me a reason why it was rejected. I, you know, I used the send law, the two things that needs to go through. And no one could give me an answer and then went to mediation. I shared my point of view. All summer I was dizzy. The mental strain then affected me physically. It was, it was such a shame because it's meant to be a really fun time with my kids on summer holidays, but I was not 100 percent because mentally and then physically I was not feeling great. We went to mediation. I asked them, can you tell me why he definitely doesn't need an EHCP? Because that's what you've got to prove. Because Send Law says, they may have SEND needs. He has two diagnoses, so you can't debate that. He has epilepsy and he's autistic. And then they may need an EHCP. okay, tell me why he definitely doesn't, because that's what you've got to prove. And the person said, I can't. So I'm overturning it. And I cried. I cried so much, because I was like, oh, okay, you believe me? She was like, I don't know why it was rejected, all of these things. This is 10 weeks of my life that Are just full of stress, dizziness sickness, headaches, all of those things. And you can't even tell me why it was rejected, and that's only one tiny example of 10 weeks compared to like, other bits that we've all gone through throughout trying to get people, like you said, to believe us. We do know something. And actually we know our kids the best for sure. Yeah, definitely. And in actual fact, it was a question that I posted on on my page the other day. You know, what was the best piece of parenting advice you've ever been given? And the the answers that are trust your instincts, you know, your child better. Another one was, you know, don't pick your battles. I think we're all very aware As SEND parents authorities, if you like, that we have to fight and it leaves us exhausted. And we're already exhausted because being a parent of a SEND child is utterly relentless. And if you have no support network and no backup, it's even more overwhelming. And I think You know, these conversations that you're having with, you know, people like myself and the other guests on the show, they're so important because we represent so many different types of people across a whole spectrum in the UK. But the one thing we have in common, apart from the, the send child that we're, we're trying to bring up to the best of our ability. is that we're all struggling. We're all on our knees. We all need help and none is forthcoming, but there seems to be plenty of money trees for other things. Yeah. Yeah, absolutely. I totally agree. So what is something that you can share just to end, to encourage and inspire, send parents listening right now. It's not going to resonate for everyone because we all have our own journey. I am a chronically undersupported person. I have no family and my best friend lives 200 miles away. So it is just myself and my partner and our children. And I would say, look for the little things. Date nights aren't possible for us due to You know, childcare and money because we're on a single income and things like that. And so that lovingly made cup of tea, right when you needed it the most, your partner coming home half an hour early, cause he can see how many appointments you've got on your calendar, the softest of pajamas. Watching the little birds go to the bird feeder, sometimes those things have to be enough. And if you create enough of those little moments, they really, really do help. And I'm talking from the perspective of someone who has struggled with PTSD years, has been a send mom for nearly 18 years. And yes, my difficulties, in terms of our journey are, are perhaps not as severe. As other peoples and I recognize and understand that, but it's always down to the little things. Yeah. Yeah. I love that little things. And we all have our, you know, we all have our different journeys, like you said. But we do, we have that connection with other send parents because we get it. We get those, those struggles. They're, they're different for different people, but we get it. And so thank you so much for, for sharing that. That would definitely help me. I'm like, Oh yeah, I need to, need to just, Those little things, when we're really stressed in those days that are really hard, just Those little birds like that's what stood out to me. I'm like, oh, yeah So so much Shelley. for joining us today And if people want to connect with you, where can they find you best? So I'm mostly on Facebook because I'm old Facebook. com forward slash little signers club. Or my website is little signers club. co. uk. And if you pop along there, I will give Nicole a lovely free post code because I produce the most beautiful sign language with English picture storybooks that are eminently suitable for send and definitely for under sevens. And if you use the code that I give Nicole. You'll be able to access that. Those there as well. Excellent. Thank you so much. I will pop your details in the show notes as well so that people can people can access that. So thank you very much for that. To those of you listening, remember you can join the conversations with the Send Mum Patreon. community for just only 3. 50 a month. And you'll get different bonus episodes and different resources to help you along on the Send journey, as well as our monthly, just check in and chat with other Send parents. So thank you so much, Shelley, for joining us. And we will see you. Next Wednesday where I'll be speaking to another guest. Thank you to the Super Sensory Squad for sponsoring this season. And we will see you soon.