S2 E4: Undiagnosed Children's Day: Nicole Bateman chats with Claudia Beard

For Undiagnosed Children's Day 2024, join host Nicole Bateman for a special episode of "Conversations with a SEND Mum." Nicole chats with Claudia Beard, a parent representative for the charity Swan UK, dedicated to supporting families with children who have undiagnosed genetic conditions.

Episode Highlights:

• What is Syndromes Without a Name (SWAN)?: Claudia provides insights into the concept of syndromes without a name (SWAN) and the unique challenges faced by families with undiagnosed genetic conditions. She sheds light on the emotional journey of navigating uncertainties and seeking support within the SWAN community.
• Sharing Hope: Claudia shares her personal journey of hope and resilience, offering encouragement and support to other families navigating similar paths. She emphasises the importance of finding strength in community, advocacy, and celebrating the unique strengths of undiagnosed children.

Note: Learn more about Swan UK and Undiagnosed Children's Day by visiting their website at http://www.geneticalliance.org.uk/swanuk

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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Welcome to Conversations with a Send Mum podcast with me, Nicole Bateman, as your host. Today is a very special episode for Undiagnosed Children's Day. And I'm talking to Claudia Beard who is a parent rep in Hampshire for SWAN UK. So, Claudia, welcome. Hi. Lovely to have you on here. Can you, first of all, so explain explain about SWAN. What is this acronym because some people may not, I didn't know what it was and what it stood for until a few days ago. So to be fair, I didn't know either until I came across them. So SWAN, it stands for syndromes without a name. So it covers all the undiagnosed conditions in the UK. They're the only charity in the UK that do support families like mine, because I have an undiagnosed child. They're the only charity in the UK that support families with an undiagnosed condition. And they're a great source of help. They're a great source of support. There's lots of different avenues that you can, Use to get support like a Facebook page and yeah, and it's free to join. So there's no, there's no stress. You can lurk in the background and just listen to stories or ask questions. It's just a fantastic charity. So can you tell me a little bit about your link? I mean, you said about yeah, your son can you share a little bit about your story and your link to syndromes without a name Yeah, so I have a little boy, Trent. He is 10. He is genetically undiagnosed. So he does have certain diagnoses that explain some of his symptoms, like he's autistic, he's epileptic he's non verbal, he's peg fed, but his overall genetic condition is currently undiagnosed, which if you think in 2024 is just ridiculous. However, science. Is catching up, but not quite there yet. We had along our journey, so we had a normal pregnancy. There was nothing to explain or prepare us for anything that might've come. It was a story like, it was not interesting story, normal pregnancy, normal birth. Apgol was perfect. Then Milestone started being missed. He used to scream and cry for hours. We'd go to hospital because then he'd pass out after that and they'd be like, no, it's normal. It's, he's got colic. And I'm like, this is not normal. I think I had the confidence. because he was my third kid, and then I said, as I said, he started missing milestones. He wasn't reacting to toys. He just wasn't doing, he wasn't uncurling like babies do. So he got a diagnosis of cerebral palsy, but that was later discarded. But it was quite interesting that when we got that label of cerebral palsy, we were, we were directed to the SCOPE website and we were given pamphlets and there was people that we could talk to. When we eventually learned that he was undiagnosed. There wasn't anything, the doctors that I was dealing with at the time had never heard of SWAN. So we were sort of just left in limbo, which was quite scary. Again, when you think, you know, science is what it is today, the things that they can do in the medical field, and they can't tell me why my kid is the way it is. So we then, I happened upon SWAN and it was, it was a lifeline. Yeah, absolutely. That's, that's so scary that all that support then is withdrawn. And if you're listening to this and you are in a similar position, then definitely, reach out to Claudia, to Swan how are you feeling in that? in that moment, in those moments when you realized, or when they told you, actually, we don't know. Yeah, it's so strange because, I think every SEND parent goes through the grieving process. I mean, you grieve the child that you thought that you were going to have, but then you might have an avenue to be able to go down to have a better understanding of who they are, what they might become, what challenges they might face, that sort of thing, and where you could get support in that. When you live in limbo with no, you know, I'm not one of those people that are afraid of a label for me is the signpost. So I know which way to go when we When we were left in sort of limbo, it's, it's quite scary. And then when you suddenly find a community who actually understands and who are the same boat, our children are all completely different yet overall, we're the same. And yeah, it's comforting. And you can be up at two o'clock in the morning and message on the Facebook page and guaranteed there's a host of other parents on their Facebook page. Ready just to talk to you and talking about how really hard it is. Some of those conversations that you can't really have with most people and say, this is really hard and you don't have to say, but I love my child because we know you love your children. Yeah. But to be able to have those hard conversations, as well as to celebrate the milestones you do hit or, the things that do happen and also grieve with the parents who, who go through some really hard times. Yeah. Absolutely. It's, it's so important, isn't it? Having that community that get it. And I mean, that's why I started this podcast so people can, talking to people like yourself, it's a variety of different things. Some people will resonate with certain things that people say, some of the guests say, others will really resonate with others. And it's about that, helping us all feel less alone. Like, I don't know how it feels. personally to have a child with an undiagnosed condition, but something that we both just could feel is I've said to you, right, my son's just had three seizures in 24 hours. You totally get that. And, you get that unpredictable nature of it. So it's, it's important for others with undiagnosed. conditions to find people like yourself and that charity so that you they know that you totally get it. Yeah. Yeah. Yeah. So what are some of the kind of unique challenges you would say that families of children with undiagnosed genetic conditions face? Most people will look at you blankly when you say that your child has an undiagnosed condition. Again, because you just, you can't conceive the fact that in 2024, science can't give you an explanation when all the amazing medical things happen. And they also, I think a lot of the times they can think that because you don't have that label that nothing's actually wrong or it's not as bad as it may be. I think that that's a big thing. We as parents in general of the SEND community do find challenges in terms of getting the help and that we need. But when we as SWAN parents can't tick those proverbial boxes. Yeah. We find it really difficult. So for example, in my case I fought the DWP for two years to have to prove that my son, who's not very mobile, has no danger awareness, has to use a wheelchair while we're out and about, deserve the higher rate mobility. Where they were like, no, he chooses not to walk. it was that, that misconception because he wasn't taking, because he could walk, but taking into account all those other factors, we had to prove multitudes of letters from pediatricians, from social workers, sending pictures of his wheelchair, you know, that sort of thing. Eventually we landed up a tribunal. I had a 15, 20 minute tribunal and they gave us it straight away because there was a doctor who was doing it. listening to us and send trained personnel, the person there as well. When you can't tick those boxes, we find, it's really hard to get the help, have to prove that our children need the help they need or the support that we need. That's a really big thing. And then also taking into account our siblings. My son's brothers, I've got three children, two older boys and then Trent, my youngest, they've missed out on a lot because you know, some of the places that we need to go to are not wheelchair accessible or maybe too loud or it's too far away. And you know, they miss out on a lot, so that's not necessarily unique to SWAN, that's unique to any SEND family. But those are some really hard challenges and you know, my kids, my boys are awesome and they understand. But things like that can be really hard on a, on a day to day basis. Yeah, absolutely. The siblings, is it too, they're, yeah, they're the unsung heroes, aren't they? Yeah. It's like my five year old, you know, this morning going off to school, worried about her brother cause she just had a seizure and you're just like, she's now got to go. Get on with her day, but actually she's experienced that this morning. And that's something that, she worries about him. Like I do, like, even though she's so young. Yeah, I get that. I get that. And we used to be in hospital for days with Trent and his brother, like we actually did a video for Swan a few years ago and we went in when, when my son was interviewed and the things that he said afterwards, like when we would be at, I'd be at hospital with Trent and he'd be having to go to school. Not knowing what was happening. It's just when you don't think about it and then they say that yeah, I get it. In your opinion, what do you think the most kind of crucial aspect of support needed is and how can people, if they're listening, communities, individuals, help and support other families of children with undiagnosed conditions. When it comes to the medical field, I think just understanding for me, communication was the biggest thing. When you would go to a doctor's appointment, for example, and they couldn't give you an answer, understandably, you would walk out of there, not hear from them again until your next routine appointment, or if there were, you know, that they couldn't answer the question, it almost wouldn't be addressed for me. Personally, I want communication. So even if you say, look, I don't, I don't know. Let me go and find out and then come back to me at a later stage. It's just that open communication. I had a pediatrician who was phenomenal. She listened to me. I mean, nobody knows my kid better than I do. I'm not medically trained. I've been on this, this rollercoaster for 24 seven for the last almost 11 years. However, nobody knows my kid better than I do. So when I tell you that there's something wrong, you need to listen to me. I think that open communication both ways is important in terms of the community. I think it's just, it's just support. It's not trying to fix it. Yeah. I've had a lot of people, a lot of friends, family who come from a really good place because they're wanting to, to thinking that they supporting and trying to fix trend. When I don't, I don't need you to fix him. I just need you to, when I'm having a bad day, just listen to me, you know, just let me, let me have my moment. And then, you know, And if it's a really bad day and I've been in hospital, it's bringing the boys a takeaway or, you know, just sending a message saying how you're doing it's, it's just support and listening and not nonjudgmental. That's the biggest thing I think in terms of communicate in terms of friends and family and things like that. It's just. Support, which, you know, a lot of families don't get. Yeah, no, absolutely. So, so important. Absolutely. Just being there, sending a meal. I love that. Like that's, you know, we, we do that in our church, actually for people who have just had a baby and it's just so useful for when you don't have to think about things and when you're a send parent thinking about all of the different things that you've got to do. if someone takes one thing off your list, it's like so helpful. Oh, I don't have to know what to cook because it's already cooked for me. Nothing dramatic, simple little things which actually mean the world to us. Exactly. So as we finish, what kind of hope, what would you say to parents out there listening, to give that hope to them? Specifically to, to parents, and this is not just for Swan, it's for SEND parents, I know it's hard and I know some days it seems impossible. That, you know, life doesn't seem fair, and for undiagnosed families, living in the unknown is terrifyingly scary. having to constantly be fighting for your children in the medical community who doesn't always understand, or having to constantly field questions from family and friends about why your child is the way it is All those parents, they're awesome. it sounds cheesy as we were talking about earlier. It is cheesy, I know. But every day that you wake up and you care for your child, makes you a hero. Every day that you, you get things done when you, when you're so tired, and you may be tired, but you find the strength and you may get frustrated, but you find the patience and you know, you're always having to fight and chase and keep up with a mountain of paperwork, as you probably know about our children. But you find a way and no matter how you're feeling, you need to know that you are completely amazing and your strength and your courage and your fortitude inspires everyone around you. I'm getting choked up. Absolutely. It's important to have your boohoo days, is what I call them. Grieve, cry, shout, scream, woe is me, the world hates me, why is it like this? But don't stay there. Wipe your tears, stand back up and just keep fighting and knowing that how absolutely amazing you are. Yeah, definitely. Thank you. Thank you so much for sharing that. And I'm sure, you know, people listening will be like, yeah, like I'm like, yeah, thanks, Claudia. We can, we can do this. You're not alone. And not alone. It's just one step at a time, isn't it? Each day, see what happens. It's the unpredictable can happen. But, You know, you, you, you're not alone. So thank you. Thank you so much for sharing. And, you know, definitely if you listen to this and have a look at Swan and also, you know, if you're someone who's, you know, child is undiagnosed and you, you want that support, then, then definitely connect and link that I'll put a link in the show notes. So remember that. Every Wednesday, a new episode drops on conversations with send mom. And we also have some specials like this. So definitely have a little look, give it a rating on Spotify, share it with people who you think it'd be helpful for, because you never know, who things can reach and who needs to hear that they're not alone. So thank you, Claudia. Thank you. Thanks.