S2 E8: Tips for filling out DLA and finding your community: Nicole Bateman chats with SENDMummies Jemma and Lisa

In Season 2, Episode 8 of "Conversations with a SEND Mum," host Nicole Bateman sits down with Jemma and Lisa from SENDMummies. Together, they share invaluable tips for filling in the DLA (Disability Living Allowance) form, discuss their personal stories, and emphasise the importance of finding and building your community.

Episode Highlights:

• Tips for Filling in Your DLA Form: Jemma and Lisa share practical advice and insights for parents navigating the process of filling in the DLA form. They discuss common challenges, key sections to focus on, and how to effectively communicate your child's needs and challenges to ensure the best possible support.
• Personal Stories: Nicole, Jemma, and Lisa open up about their individual journeys as SEND mums. They reflect on the highs and lows, the lessons learned, and the resilience required to advocate for their children's needs. 
• Importance of Finding Your Community: The conversation highlights the significance of finding and building a supportive community. Jemma and Lisa talk about the creation of SENDMummies, a platform dedicated to connecting SEND parents. They discuss how having a network of understanding and empathetic parents can provide emotional support, practical advice, and a sense of belonging.

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

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Hello, and welcome to Conversations with Send Mum podcast. I'm your host, Nicole Bateman. And today I am joined by the Send Mummies, who are Gemma and Lisa. So welcome. Hi. they have a great Instagram account, that shares so much information on EHGPs, DLA, like life. Out and about exploring with their children and lots of things that help us as parents. So I want to invite them on and share all that goodness with you. So first of all, can you, explain a little bit more about your connection to the SEND community, please? Yeah, I'll go first. So I have five children, five boys. My eldest is diagnosed autistic and he is 16. Then I have two neurotypicals, age 14 and 12, and then my two little ones are six and four, and they are both diagnosed autistic with a severe learning disability, global developmental delay. Yeah, I have a sibling who, well, I call him my little brother, but he's like 20s now. Who is autistic and was diagnosed when he was six. And that's kind of I'll probably talk about that more later, but that's where I went into the profession. But then I have two boys and my eldest is a hearing impaired bilateral hearing aid user and autistic. And my youngest has global development delay, autism, hypermobility. So yeah. You've got lots of, lots of kind of lived experience there. And what about kind of professionally, Lisa, you said you know, make it go in. Yeah, so it was, so there's a bit of an age gap between me and my brother and I'm nine years older than him. And so I was doing my A levels when he was diagnosed and back then he was diagnosed with autism and it wasn't as heard about as it is now. We're talking 20 years ago. And it just, at the time I was doing my A Levels to go to university to be a midwife and then I was so fascinated by what he'd been diagnosed with that I went and got loads more information and I ended up changing my career path and did a degree in inclusion. You couldn't at that time, there wasn't like an autism specific degree that was around. The master's was just coming out as I graduated, but I did my degree in inclusion and then I focused my dissertation in my last year around autism and inclusion of that into mainstream schools at the time because he was starting secondary school at the time I was graduating. So yeah, so then I went on the career path and worked for the National Autistic Society. I've worked in schools, I've worked in adult services, children's services, I've worked in lots of different places. Lots of experience. And I think there's a lot of us, isn't there, like, that maybe have siblings or are parents of kids who are neurodivergent. And, and we, I know for me and you guys, you know, you've got that passion to like, I want to, I want to educate others. I want to make sure that we're building this awareness. epilepsy awareness to me is like. Oh, I'm always like, come on, there's lots of different then we often, you know, a lot of people I've spoken to on this podcast often then go into the profession and helping others and like, like Julis is studying. What about you Gemma? So I don't have a professional background in anything to do with SENN. Me and Lisa met when our younger, my two youngest and Lisa's youngest started at a specialist nursery here in Hertfordshire where we're from. And this place is absolutely one of a kind. It's the only early years provision autism specific that we have. in, in our county. And I don't think there's probably many across country to be fair. No, no. And they are bridging that gap where they, we always say that early intervention is best. They are actually providing that. And, and they are small, but they are in, in the process of trying to expand. So we met there and just realized that this place is incredible for what it does for the community, what it does for autistic children. So we now run the PTA for that nursery. And it started off that we were helping all of our nursery parents to navigate the SEND system through EHCPs, getting all the support that they needed, DLA, blue badges, all things like that. And we just took that idea and. Yeah, because there were so many parents that just, they were, they were new to this. And if you think of the age that the nurse should take the children is from two. So if your child is diagnosed or on the pathway of diagnosis at two, this world is new to you. So you need all the support you can get and all the things to make life easier for your child. Like Gemma was saying, EHCPs, DLA, blue badge, all of that. But we had the knowledge of that because we've been doing and been in this world for years. So we were feeding that to the parents and we always meet up at, there's a, a certain calf that we always meet up at. We should have shares in it by now. We do all our paperwork there. We meet everyone there. Then it just went on from there, didn't it? We do like coffee mornings now where everyone brings their forms. We have like formal mornings. We just get it all. We get it all done, and that's where it started from. Yeah. I love that lived experience, isn't it? It's just all your own knowledge of the system. Yeah, absolutely. Because probably most people have some kind of fight at some point, but all of us have had different experiences. So therefore, if you bring, with you two, having your shared experiences and different experiences as well, really useful, really valuable. I mean, the nursery that your kids go to sounds amazing. Both our boys leave in July and we're just devastated. You're not going to get rid of us. We're just going to hover around the nursery and like, expand, definitely come to different areas. Everyone needs it. It sounds like so needed. But we we're not leaving, we are continuing to run the PTA even though our children aren't there. Ah, well that's gonna, we'll just let them know that, that we're not leaving We just, we're just gonna be here forever. Well, I think it's so useful and it's, and it's great to take all of that advice and, and everything like that, that you're sharing with the nursery parents on online, because then it's reaching more people. So I know that you talk about lots of different things and definitely check out the Instagram and tiktoks and mummies. But can I give you, quiz you a little bit about DLA? So like, if someone was like, one, can I even apply for DLA? What would you say? Yeah, you don't need a diagnosis to apply for DLA. DLA is awarded based solely on care needs. Okay, so that's, that's something that maybe some people may not know at all. a lot of people don't realize that. They think that they need the diagnosis first. And it's from three months, three months old, like you can apply. That's for the care element. Obviously that's different with the mobility. Mobility is you can get high rate at three, low rate at five. But the care element of it, you can apply from three months old. Excellent. So I'm sure there's quite a lot of people that are probably listening that are eligible. And so how would they start then? What would you suggest as a few tips when filling it out? Because I know that we're like, we've got DLA and the form is massive. It is, yeah. So the first thing we always recommend is to call up for the form. Because if you ring for the form, it means that when you send the form back, if you, all the forms are date stamped, if you get it back by that day, it means that the money awarded will be backdated to the date that you called. As opposed to if you were to print it offline, it would only be backdated to when DLA received that in the post. So that would be the first thing that we recommend. The second thing we always recommend is. Before you write anything in the form is to start keeping a diary just for about a week or so. And you want to be writing down everything that you do for your child, everything that you've noticed about your child that might be a little bit out of the ordinary or not quite age appropriate. Because that will help you fill out the form later. Yeah. So I think we do lots of stuff for our children that we just do because we know our children so well, but it's not actually until you write that down that you realize just how much you put in place over and above what other parents are doing. And it's not until you write that list down, you think, wow, I do all of that in a day, but you're just such an autopilot every day that you just do it and you just know that your child needs that. But putting that on paper, you realize just how much over and above you do. Right. Right. Yeah, definitely. And I think I was actually chatting to a parent on the school run today and She was saying, oh because I said about writing it, you know the day in the life, what you do, etc She's like, oh, I'm just really not great writing I was like right do a voice note do voice notes for your husband just every little thing because you I love voice notes. They're my fave Because I can just say something quickly and do that. So yeah write it down voice note it But definitely, I think that's so useful. And also chat if it's your own, if it's your first child, it's sometimes hard to know what it's like, for other parents. So chatting to other parents who have kids that maybe, you know, neurotypical and things like that, and don't have any disabilities or anything like that, maybe see like, what do you do in a day? So you can have that comparison. You can also Google for like neurotypical milestones. Yeah. And kind of compare that to your, to your own children to see like where, where a neurotypical child would be at the age that they are. Yeah. You get lots of them emails anyway, don't you? Because when you're, you're pregnant or whatever, you sign up to all of these accounts and they, email you saying your child's reached this. I mean, I, I choose to delete them after a while because I'm like, my child is not there. And then it's just another reminder that your child isn't there, but they are useful for when filling things out like DLA forms. Yeah, absolutely. And just on that point, actually, because I know that for some parents that, like you said, it's stressful. It's stressful for me sometimes getting that and seeing that, you know, if they're in that space right now, any advice for them? If they're not hitting milestones. Yeah. It's just to remember that every child is different. Whether they're neurotypical or neurodiverse, everyone's going to get there in their own, in their own time. And you shouldn't compare children. I think it's hard, isn't it? Yeah. It's hard to acknowledge that actually my child's not meeting those milestones, and my child's different, and I think on a, I can't talk for everyone, but on a personal experience, I think with every milestone, another grief cycle comes around, and when your child is not meeting them because my eldest is in secondary school, and I think when I'm looking now at what all the other year sevens are doing, and my child's not able to do that, or have the independence, and It's just another wave of grief that hits you. So it's difficult to, to say how to manage that. I guess that's a personal thing of how to manage it, but it is difficult. And I think it's nice to speak to people who acknowledge that also acknowledge just how hard that is to accept because it can be, it can be really difficult. Yeah, absolutely. And sometimes filling out the forms where you have to think of the worst day, it's like, and we've heard that a lot because the DLA form, you're not writing all the amazing things our children can do. You're writing all the things they can't do. And I think that's when it really does, it's really difficult. We've had that from a lot of parents that say, Oh, it's just, it's, I'm so negative about my child, but obviously that's the purpose. They want to know, where the support is that your child needs, or their care needs, or their mobility needs. They don't need to know the amazing things they can do, and there's other areas to celebrate that. There's other ways to celebrate that, but the DLA form is not, the purpose of it is not for that. So it is, it is tough to do it. It is tough to go through it and we always tell people to take their time with the form you don't need to sit there for hours and fill it all out in one go. Do little bits at a time and keep coming back to it and then when you have finished sit down and write a list about all the amazing things about your child all the things that they can do it just for you to read it so that it's not all that negativity. And probably have a drink. Yeah. It's like, ooh, regulate. Whatever you like to regulate. Yeah. Regulate yourself, definitely. Yeah, definitely. So, even just, you know, what you've said so far with the, you know, calling to get the form so you can backdate the money, like that is, that could be the difference of like three months worth of payment. That's amazing. Writing down. The different things, like a diary of, yeah, what's, so then when you're filling out the form, any helpful? Yeah, so I think one of the main things that we can't come up against from parents, and we certainly felt the same when we first did the DLA forms, is they're very geared towards physical disability. So when you have a child who has a neurodiverse disability, it's almost like a lot of the questions don't make sense. So it's kind of, and this is what we try and do with our page, where we try and break down the information and kind of interpret those questions for a neurodiverse child. So I think, yeah. Yeah, I think taking your time to read that question and see what information it's actually asking for. And we can help with that with our videos or our inboxes are always open. Yeah, there's a lot of case law around which we've shared around DLA and which will support Some of the answers or some of the things that you're writing in there, because obviously like Gemma was saying, especially in the mobility section of it, that's difficult to prove when your child doesn't have a physical disability. And there are ways around it. It's just knowing how to answer those questions and evidence those questions for your child and satisfy all criteria. But I think the care needs one. I think for us, and like we say, we will highlight different things to parents, and it might be little things that you don't notice. So like, I know in my house, for example, of being here in Gemma's house, we've got locks on our windows, additional locks on our windows, additional locks on our doors. Gemma's still got baby gates in her house to keep her children out of the kitchen, locks on the kitchen cupboards. Now that's over and above now age appropriate. So our children are turning five, our youngest children. You would think now we don't have to have baby gates, we don't have to have locks on cupboards, we don't have, but we do. And it's them little things that you don't always understand or know to write down because you just have them in your house to keep your child safe because our children have no sense of danger. So children, if you think of a, I always try and think of a child starting reception and actually these, some of these children, you know, are, do you know how it always notices for me? And I don't know if this is a personal thing. Sometimes I'll, walk around and or I'll be driving and I see a child on a scooter or walking ahead of the parent and instantly I'm like oh no because it's getting to a road and then they just stop and I'm like oh my child doesn't do that and it's all these little things I notice of a child around their age and I'm worrying about it. But then I think, oh no, that's fine, they're fine. Because my child wouldn't be fine doing that. It's little things I think you start to pick up when you're out and about, and you see other children around the same age as yours, don't you? Yeah, so true. I'm ready to leg it, like I, and I have done. Yeah. Other kids, and then I'm like, oh actually, I was like, sorry. That's not my child, and that child's fine, yeah. I don't have to run after that child. You're in that kind of fight or flight mode of like, let's, let's run. Even this morning, I thought this, this child was getting to. Closer, and I think he's three maybe, but I was like, is he okay? Like, will he stop? I said to the parents, and they were like, yeah, yeah, he'll stop, and I was like, okay, I won't, I'll stop kind of getting ready to run. Yeah, that's what we're forever like, we're forever. Oh dear, at least we're not alone. If we see any, if we see any parent running. We're just like this outside the nursery, outside the nursery, obviously all the children that attend the nursery are either autistic or on the pathway to being diagnosed. And all of us parents, so we're just like guards, like bodyguards around the nursery waiting for the door to open. So one child, if, if you blink and one child's gone, all the parents know where that child is. It's quite, it's a nice little community of doing it, of being together, sorry, yeah. Yeah, absolutely. And that's, that's definitely something a community, I think is. It is, isn't it? And, this is why, you know, this is why I started the podcast, to help people not feel alone if they're listening. That's why, you know, I'm sure with your page, you want to help the community. You want to. You know, let people, I know, I watched some of your reels and I'm like, yes, you get it, you get it. We get it. We do get it. Yeah, which is, which is really powerful and I think much needed as well. What are your kind of, so slightly changing tact, unless you have any, any more tips for the DLA actually, before I change tact. I think an important thing to remember is like your interpretation of the word care. We did do a read on this as well. So it's not just the physical help that you are providing. It is assistance, it's guidance, it's prompting, it's encouragement and supervision is classed as care. And with a lot of our children, they are so unpredictable that we are having to provide that supervision 24 seven. all hours that they are awake, that is constant care. Yeah. And I think it's I know that it's always a tip that you always do first of all, is to write it in pencil first, little tips like that to write it in pencil before you write it in pen. Just to always take a photo of it. So when, cause of these, you know, you'll get a three year award, but that three years you blink and it's time to do the 72 page form again. And It's good to have that of, to refer back to as to what support you put in place. It's just kind of a stepping stone, isn't it, to the next form so you can see where you're at and what's changed and add all the changes to it. Yeah, always make sure that you're sending photocopies of evidence unless DLA has specifically requested the birth certificate, which they don't do all the time and it's, it's not, I think they do it as an audit purpose, it's not a mandatory request. and always send the form by special delivery. It comes with a free post envelope which doesn't always have the address on it with the postcode. You do need the postcode in order to send by special delivery, but you can find that online or you can inbox us. We'll give it to you. I'm sure it's on one of our reels somewhere. That way we hear a lot of forms that get lost. Or they get delivered and then they're not scanned onto the system properly, but if you've got that proof, then you've got that standpoint to challenge DLA when they're refusing to backdate an award to the original date the last bit is obviously the form is filled with tick boxes. Little boxes for you to write minutes and things don't feel restrained by those boxes. You can write outside the boxes. If something is asking you for a measure of time in minutes, but it might take you days to prompt and encourage your child to get in the bath, then write days. Don't try, don't be limited by the fact that it's asking for minutes or hours. Don't be limited by the small boxes to write in. You can write outside. If there's tick boxes and they don't quite apply for a different reason, you don't have to tick anything. You can just write next to the tick boxes how it is for your child. If it's, if they don't fit into the box, don't try and make them fit into the box. I think you can always add, you can always add further information, can't you, with to the back of it. So if you wanna write down or type up some more information regarding that question, just kind of staple it to the back of the form. Absolutely. And I was gonna say that comment that Gemma said, you know, if your child doesn't fit into the box, that don't fit them into the box, I think that's a general kind of good, good point, isn't it? About, about our children and. Helping them thrive, but it doesn't necessarily mean fitting them into a certain box as a comment. So that leads me into kind of thinking just to end, what are some of your, I suppose, hopes for the future encouragements for parents who maybe are feeling alone right now, going through all the paperwork, fighting for their kids. What's some encouragement that you would share with them? I suppose the main thing is like, you're not alone. We have all been there and even when we've got years of experience behind us, we still have those moments where we melt down and things get really, really overwhelming. But like, you're not alone. It's really important to surround yourself. With other SEM parents, like they have literally been our saving grace to have people around you that just understand what your life is like, understand what the world is like, how your children are and, and it comes with no judgment. Like, because they're dealing, they're dealing with the same thing. there are so many support charities out there. You know, our, our inbox is always open. We, we. respond to every single message that we get. The SEND community is a small community, but it is an incredible one. We say it all the time. It is the strongest community that we know. Everyone is so supportive. Everyone is right there with you celebrating every little milestone and supporting you through the toughest of times, like we, we've all been there. Yeah. And I think from when, if I look back to when I started and, you know, 20 years ago, times changed for, for the better. And there's still a long way to go. If I look back to when my brother was diagnosed and the support my parents had, it was nothing compared to now. There wasn't social media like there was back then. People wasn't able to to interact the way that they can now. There wasn't all this information out there that they could seek. It was just, a Google was a thing back then. You would just do a Google search of what autism was. But I think there's so much out there now and so much support and join the communities, join the Instagram pages. Everyone's kind of in it together. And I think it's just what Gemma said. Surround yourself with people that, that understand, that get it because they'll be the people you need. Going forward. Yeah. Absolutely. It's, it's funny, isn't it? Like at my son's school, I end up seeing, like one time I was in reception and I saw someone wearing a Cendroform hoodie or like, and I was like, ah, yeah. And then we had a chat and now then she's introduced me to that and her kid is in year six, whereas I've got in reception in year three and then just, you just kind of gravitate towards each other cause you just, like I've got friends in all the different year groups and they're, parents of kids with SEND. So, you know, Yeah, we always say, like, we kind of need a signal. Yeah. So you just get it. You know, like the Yeah, like, whatever it is. From just experience, I do think That's a little bit trickier when your child's in a mainstream school to a special provision. I mean, we obviously our children are in a specialist setting and that looks incredibly different to my child setting who is in a mainstream school and a fantastic mainstream school at that, you know, he has a great senko. But I don't have anything in common with the parents there. It's very, you're a very small community of parents when you're in a mainstream school, whereas when your child is in a specialist school you know, everyone's in that same situation. So I think if your child's in a mainstream school, have a look at what's offering SEND sessions. You know, we have local trampoline parks and we have, you know, swimming sessions and lots of things going on. And we have something called space and advance and stuff in Hartfordshire. Sometimes communities like that. are good to find other parents in them and see the SEND session so that you don't feel as alone especially on weekend school holidays, things where it can be really isolating for you. Yeah, that's a really good point because, yeah, it is a minimal group of parents that it's like two in each year group or whatever that you kind of, I know and gravitate towards, not that, you know, I don't know all the parents in the school, but it is harder. Yeah, it's harder to relate, isn't it, to people who don't understand it, and it's not that, you know, they're being judgmental, they just don't live the life that we live. Exactly, and I mean, I see the difference. My daughter's just started school, and I just sent her in to school. I just go, here you go. I'm like, wow, I don't talk to the teachers. It's just, here you go. Whereas it's a very different experience of, of all the chasing and things like that, that I do and chatting and emailing and calling for my son. So yeah, if you don't, if I just had that with, you know, with my child, like with my daughter, I wouldn't have the understanding of all of the other things. So yeah. Yeah. Awesome. Yeah. Thank you so much for chatting with me. And if you want to, find out more about Send Mummies, then they're on Instagram and TikTok. I think the same handle. Yeah. Yeah. Yeah. Yeah. Excellent. And definitely go and see them, follow them. They are great. They do respond to messages really quickly, personal experience and and definitely reach out and remember that. And if you're listening to this podcast and you want to have sneak peeks into upcoming episodes, then follow conversations with Ascend Mum on Instagram as well, where we'll show reels and encouragement and different real life mum, parent stories. So definitely, Come and have a follow on Instagram of Conversations with Sendmum and Sendmummies, and I will see you next Wednesday for another episode. Thank you both for joining me. Thanks for having us. See you soon. Bye. Bye. Bye.