Episode 4: Extreme juggling
~music - “Wake me up, loud as clouds.. You’re a dreamer, I am too. it’s f**king normal we could rule the world”...
Lauren Fenton 00:16
This is the f**king normal podcast, the cheers, tears and Friday night beers of parenting disabled children.
Rina Teslica 0:24
I'm Rina,
Lauren Fenton 0:25
and I'm Lauren.
Rina Teslica 0:26
And we're both mothers to daughters with special needs. Parenting a disabled child can often feel difficult to navigate. If this is you, you're not alone. We're here to share unique parenting stories, and chat about the things that we've learned and are still learning.
Lauren Fenton 0:40
Prepare to sometimes laugh, sometimes cry, but hopefully leave with a shot of optimism in your arm. And don't forget we are talking from a parent's perspective. We would never presume to talk on behalf of a disabled child or adult. So expect bad language, and quite frankly, some brutal honesty.
Rina Teslica 0:59
Because really, what the f**k is normal anyway?
Rina Teslica 1:15
Hello, and welcome to another episode of the f**king normal Podcast. I'm Rina,
Lauren Fenton 1:21
and I'm Lauren.
Rina Teslica 1:22
...And today's episode is all about extreme juggling. I think that's a much better descriptor than "finding a work life balance". Of course, all parents struggled to juggle work and raising a child. But raising a child with disabilities has a whole load of added pressure. You've got to juggle finding suitable childcare, organising hospital visits and therapies, which let's face it are often right in the middle of the day. And let's not get into all the unpaid care work a parent is often doing outside of their paid job. It brings it home just how difficult it is when you're looking at the stats. For example, a report showed that a third of parents of disabled children are not working, and of those 40% have been out of work for more than five years. In comparison, only 17% of people with dependents i.e. non-disabled and disabled children are not working. Another survey of 900 parents found that two-thirds of parents declined a promotion, or accepted a demotion just to balance care and work commitments. And finally, and most shocking of all, is the DWP's findings that it costs on average three times as much to raise a child with a disability as it does a child without any special needs.
Before we introduce our guest, I just want to flag that today’s episode contains quite a lot of acronyms relating to education and hospitals as well as terminology around different seizures and seizure types. Though no doubt familiar to some listeners, we have put a little glossary in the show notes to clarify these where we haven’t done so sufficiently during the course of the conversation. Enjoy the episode.
Lauren Fenton 2:55
And our guest today is our friend, the lovely Helen Gamble-Shields who I'm delighted has agreed to join us on the podcast. Originally from Ireland, Helen is mum to six year old Finn, who has a rare genetic condition called Dravet Syndrome - it is a potentially life-limiting form of epilepsy. And from the age of four months, Finn has had complex seizures of varying lengths which are difficult to manage with medication, and all too often resulted in trips to A&E. He will not grow out of the seizures. This is a life-long condition. Dravet Syndrome often brings with it other challenges from physical to developmental and behavioural and I understand that Finn recently also had a diagnosis of autism. Yet he is the most beautiful and affectionate boy and I can attest to how gorgeous and brilliant his cuddles are, having been lucky enough to have some. They live in North London with Finn's dad and Helen's husband Marcus. Helen is also - in the context of this topic it is kind of important to mention - Helen is also an architect. As is Marcus, I believe. And her and Marcus both work full-time. Helen returned to work after a period of maternity, and obviously has ridden the roller coaster of extreme juggling juggling since then. So I'm really grateful that she's agreed to tell us about that. Welcome to the podcast, Helen.
Helen Gamble-Shields 4:18
Hello guys. Thank you. It's a really lovely introduction. I'm going to start mind you and tell you that Marcus is a landscape architect and he takes it very, very seriously that he's a landscape architect. But yeah, thank you so much is no no problem he'll be he'll be he'll be absolutely fine now that we've corrected it.
Lauren Fenton 4:38
I mean, that's pretty close. Most people's husbands and partners I like, I dont have a fcking clue!
Helen Gamble-Shields 4:41
We are definitely in the same business. Put it like that we have we actually do some projects together. So yeah
Lauren Fenton 4:49
It's got the words architect in it.
Rina Teslica 4:50
You do the house and then he does the outside.
Lauren Fenton 4:53
How are you?
Helen Gamble-Sheilds 4:54
Me? I'm I'm pretty good today. Yeah, I've been. I'm actually doing really well this week. Last week was a little bit difficult because Finn had a whole bunch of seizures around the middle of the week. And I was trying to get go to work get finish school while he just wasn't really that well. And then also my parents came at the end of last week for the weekend, which was actually very good. However, yeah, it just adds another dimension I suppose to the week that you've just you've just had but ya know, this week, a little bit calmer. My folks left yesterday Finns in really good form and I think he's just gone to sleep so
Rina Teslica 5:26
Perfect, well that leads quite nicely, Helen, why don't you tell us a little bit about kind of you and your career and pre babies? What was your life like pre-babies?
Helen Gamble-Shields 5:37
pre pre babies? Um, it's I've been an architect, I suppose 20, nearly 20 years. So yeah, I know exactly. That's how old I am.
Rina Teslica 5:47
You do not look your age.
Helen Gamble-Shields 5:48
Thank you very much, Rina. Thank you. I moved to London about 18 years ago. So I've been working for the same company since then. So I guess I'm pretty, I'm pretty established in that company. So I'd be in the kind of the higher level management. I run most of my own projects and have teams that work with me. So I guess in terms of architecture, I'm doing okay. But I actually just really love the profession. I just really love, I love the challenges. I love the challenges of the different projects and seeing the you know, the work from inception to completion and the little arguments with the contractors as you go along, and that kind of thing. So, yeah, I had fun in my mid to late 30s. So I'd gone through a career up until that point, and I think my career was, and is probably still quite important for me. But obviously, having a child is a massive change, and then having the shock, and the, you know, the massive change to your life that having a child with quite severe disabilities and complex condition, that is a bit of a juggernaut into how you manage your life and how you manage your work. And I guess it totally changes your priorities as well, right? Yeah, when he was born, no, there was no real signs of anything until he was four months. And then he had a seizure. It was a long complex seizure. And that was initially a big shock. The seizures kept coming, you know, they kept coming. I'm not saying they, you know, you had one that month, then you had one so many weeks ago. And in between that point, I think, actually, I realise I'm quite an optimistic person. People said to me, it's, you know, children grow out of it, it could be a one-off. And that's what that was the line, I just, I took that I went, alright, it's a one-off. And then when it kept on, you know, they kept they came again, maybe about three weeks later, another one, and then you know, they started to develop like that. And then you suddenly realise this was a condition, a long term, potentially a long term condition. And like yourself, like both of you, he does have a genetic condition, it did need to be diagnosed. However, with his Dravet Syndrome, there's only certain types of epilepsy, I guess, that come sporadically. And that's quite common for Dravet children to start to have a seizure at that point. And they also have long seizures. So that first seizure within was over 20 minutes long. And people said, oh, maybe it's a febrile seizure, well, you don't get febrile, apparently, you don't really get febrile seizures below six months. And then obviously, obviously, people said, you know, slightly as he'll grow out of it, and things like that, but actually, he suddenly followed, he was following a pattern. He also then, he had tonic clonics, but they'd switch from side to side. And there was various different indicators that suggested it was Dravet Syndrome. However, obviously, they don't give you that diagnosis until they have that genetic confirmation..
Rina Teslica 8:59
Which took how long?
Helen Gamble-Shields 9:02
It took 16 weeks, nearly actually, but I which point we have been in so many hospitals been admitted to the Royal Free so many times, we also had, he'd had status seizures several times, as well. So that's when he a status seizure means you know, the seizure is a tonic clonic goes on for more than 30 minutes. 30 minutes is the general the cut-off point. So it goes on for longer than 30 minutes, at which point, it can start to affect the rest of the organs in the in the body, obviously. So you can get you know, things start to slow down. Breathing can be can, you know, can become subdued and things like that. And we were really lucky with Finn actually, and that he was actually quite robust because he actually generally dealt with the breathing OK. Whereas a lot of other children's Dravet, they actually, you know, they have to have oxygen immediately. Whereas, we didn't quite have to get to that, but obviously, you know, it was always you had to run the ambulance and things like that, and then you had to get to resus. But yeah, the sort of status seizures and then yeah, he also got intubated once as well. So that .. we had to go to the we had to go to the Evelina..we got transferred. You don't realise things like there's no paediatric intensive care unit in some hospitals, right. You don't realise until..
Lauren Fenton 10:28
Until you need it.
Helen Gamble-Shields 10:29
We were in intensive care for quite a few days with him at that point, and then we got transferred to the neurology ward. And yeah, I remember overhearing this paediatric, she was a professor- the consultant. She literally said, yes it's a strong suspicion that he has Dravet syndrome, yet, we didn't have a diagnosis. And I kind of thought, you bitch.
Lauren Fenton 10:52
Yeah, you didn't want to hear that.
Helen Gamble-Shields 10:53
I didn't, I didn't need I didn't need to hear that, at that particular point in time, and obviously,
Lauren Fenton 10:57
How old was Finn at this point?
Helen Gamble-Shields 10:58
Finn was probably about six months old when he had his first kind of incubation episode. And then he hadn't, he was, he had to go to intensive care, four times through incubation. But you kind of became bit used to hanging out with the anaesthetists, you know, trying to decide whether or not he needed to be intubated and needed to be transferred, or whether the seizure was going to stop, he definitely had a , you know, gold membership card at the Royal Free about, you know, at that point, and the ambulances, and paramedics, you know, that was all, we just, we would have, like paramedic parties in our living room, you know, several nights a week or you know, where you just get - you get these paramedic specialists would arrive, then you'd get the maybe get the the rapid response vehicle would have arrived, and then you get the actual full on ambulance. I know exactly. You know, we this is something I think that a lot of parents that have children that have very complex conditions like this, you know, they they experience and
Lauren Fenton 12.02
I mean..not everybody and I think don't dismiss it, and don't say that it's something you get used to, but clearly, it's not something that you should ever get used to. And you're the emotion in your voice...going back there is clear..yeah
Helen Gamble-Shields 12:13
It was really, it was really, really tough. Yeah. Like, the ICU is just somewhere where you don't want to be, you know, because there's just very, very sick children. And there's a lot of people that are very, very emotional, you know, as you would expect. It's just one of those things, you suddenly find yourself going through, right?
Rina Teslica 12:34
And you don't think you just go
Helen Gamble-Shields 12:36
go just go right.
Lauren Fenton 12:36
You’re just in Survival Mode? Yeah,
Helen Gamble-Shields 12:37
you're just in survival mode, aren't you just friggin here I am. You're like standing in a corridor watching this consultant, like, you know, he looks literally drained from what he's, you know, just had to treat your child and you're just like f**ck, well, it's just, you know, what is actually happening, you know, and,
Rina Teslica 12:56
but the way that you describe it says so much about your personality and just your positivity. And I think that's probably what got you through it and got you to a point where you were like, Okay, this is just how it's gonna happen right now. And I need to get on with it
Helen Gamble-Shields 13:10
Yeah, you just had, you've got this tiny little baby, and you just have to get on with it right? Yeah, you just got to keep going. Keep on truckin or whatever, whatever the f**ck you say you right, you just got to, you got to keep...keep on going. Because, like, he's going to come out at that seizure. And he's just going to be this little baby that wants fed and wants to have he just wants Mummy, he wants his daddy, you know, he wants to go for a walk and, you know, do do whatever else, you know, but yeah, it was it was just really constant. You possibly don't need to read the words "catastrophic" or "life-limiting" or "plateauing developmentally", or, you know, "ataxic" wo..rds you don't even understand. Right? So you're like, ataxic?. What does that mean? Oh, right. balance issues..
Rina Teslica 14:01
I didn't, you know, I didn't Google it. I because of that fear of like shit. I'm going to read something really f**king awful today. And then I'm going to be so depressed and it's going to just so what I did being f**king millennial on Instagram, I searched Noonan syndrome on Instagram. And it was probably the best thing I ever did.
Helen Gamble-Shields 14:18
Oh, that's a nice thing to do. Yeah,
Rina Teslica 14:21
I saw kids with the syndrome who were living a fabulous life. Yes. bear in mind its Instagram, and you're posting like the best part of your day.
Lauren Fenton 14:35
But maybe that's what you needed to see?
Rina Teslica 14:36
Yeah, it was just what I needed to see. And I think I followed, like, every Noonan syndrome child's account on Instagram, and I would be obsessed. I'd go on there all the time....So once Finn was born, obviously you go on maternity. What was your kind of trajectory back into work? Because you're obviously working full time now. And you have them for a couple of years. I imagine? What was that like once Finn was born and how did you manage that?
Helen Gamble-Shields 15:02
Marcus, you know, he wanted to be, you know, like most dads want to be, you know, very involved. And I think shared parental leave had just come in shortly before we'd had Finn. And that was our intention that I would do nine months and Marcus would do three or four months - whatever we could afford. We are in the landscape and architecture business, right landscape architecture?! We actually only get statutory we don't have because they're mostly small, you know, small- medium businesses, we only get statutory maternity and shared parental leave money. So we only have a certain level of finances. And then we have to try to get back to work as if we had a mortgage pay, finances to pay a small child to, you know, look after. So we had intended to do the nine months and the three months, basically with just how unwell Finn was, I think I did an extra month maternity, so I think I did 10 months. And then Marcus looked after him for three months. We also realised we couldn't put Finn in with the childminder, and we couldn't afford a nanny, we definitely have no idea what special needs nanny cost, we didn't need to know. And so our only option then was, let's look at the nurseries. So I kind of thought they just wouldn't be interested, or were they capable or what they would offer kind of thing. But I did go to see a couple. And actually, they all were very much like, oh, well, that sounds okay.
Lauren Fenton 16:39
Inspired you with confidence? Or?
Helen Gamble-Shields 16:42
Yeah, yeah. Well, "he'll probably grow out of it!" is what they said. While, I was going, "Ah, he probably won't.." But yeah, they seemed to be open. And then we found a nursery around the corner from our house that were willing. And actually she the manager, she had had a relative that had epilepsy. So she had a bit of an understanding of it. And it was, you know, a family member had had epilepsy. So she was relatively open to it. And I explained, you know, Finn had an epilepsy community nurse that could come and do the training. And with her, we got a place for Finn. And to be honest with you, he absolutely loved that nursery. And his key worker was the SENCO. And I think that was first time I just met, you know, I don't know, kind of on your journey, you meet these people, don't you that are like, literally saints or angels. They're so caring. They're so loving. And here's your little child, and they're looking after him.
Lauren Fenton 17:43
Did that mean you could go back to work then when he was..
Helen Gamble-Shields 17:47
Yeah. So in fairness, we did do the shared parental leave. So I did go back to work. While Marcus has had him for a couple of months, right. And I think actually, that made it easier. Because I knew Marcus was with him. You know, I could trust him. And you did just feel he just felt much better knowing that, you know, you were in work. And yeah, he might need to call you. But he had been on he could look after him and Finn was was safe with him. You know, he knew what to do. And then, you know, then it was time for Finn to go to nursery, which was, you know, it was another step. But I guess I just didn't have that full separation.
Lauren Fenton 18:24
It phased you in a bit. I think it's very difficult for any working parent leaving children in a nursery setting and going back to work for the first time. Like yeah, I went back to work after maternity with my eldest, Olivia, who people who don't know, or haven't listened to another episode of the podcast is two years older than Bea who has special needs. And when I went back to work the first day that I was back in work, and she was at nursery, she was bit on the face by an older child. Yeah, nursery, which, you know, it happens, right? It's like, it's one of those things, but like, way to make you feel comfortable going back to work to get that phone call on the first day. I was just obviously, like, fast forward a few years, it might have been Bea that had been doing the biting to someone else. So yeah. It's, it's different stories. But um, yeah, I just think that I can, I can imagine at least at the very least, that staging of having that time when Finn was with Marcus must have been somewhat helpful in terms of settling into the work environment.
Helen Gamble-Shields 19:34
Yep. Yeah, definitely. It just really kind of did help. Because you could phone him any point, right?
Lauren Fenton 19:42
And what was it like then when you went back? And that wasn't the case. So how was the juggling or extreme juggling, as we've named it, once Finn was in nursery? and talk us through some of the challenges that you encountered, too?
Helen Gamble-Shields 19:59
I suppose in that, that first year then was that it was actually pretty challenging in that at that point, Finn, Finn's emergency protocol for seizure was to give midazolam immediately, somebody else's phone in the ambulance, they'd phone us and, and generally, we would go immediately to the nursery, which was by our house, so I basically just leave work, which, you know, I would just go "right, I'm sorry, I've got to go".
Rina Teslica 20:32
Yeah. How was work? Because obviously, you'd been there for a while, before you'd had Finn. So you already had some sort of standing in the company where they quite understanding of the situation or after a while, would they like, right, you're gonna have to..pick?
Helen Gamble-Shields 20:48
They were actually, I mean, I would go they were absolutely, they were brilliant. In that they would go, "yeah, you've clearly got to go and sort this is clearly your priority, right". And I think also, I was very aware that I did not want to take the piss, I knew it was a business, I would not want to be taking advantage of a business, I suppose. They were actually just brilliant, right? So I would, I would have to go, I would just go. And I could be there for away for like, a day, maybe, you know, I might have to go to the hospital stay overnight, and then, you know, maybe come in, so I might, like, take my phone and like, take my laptop, and just go. And then I would try and maybe check in later kind of thing. And I have been there a long time. And I kind of knew what I was doing. I had some really good team members and in fairness my directors, they were really good. I mean, I had kind of thought about going back and do you know, before I thought, Oh, I could do five days in four. But actually, I suddenly realised I can't do five days in four, I have to have the five days because I need complete flexibility to be able to get my hours done. Because if I was trying to cram hours into four days, I wouldn't be able to achieve that. Over some of that period, I would have taken some leave, I might have taken a holiday day, or I might have take a bit of unpaid leave... I'm struggling here, I can't make this up, you know, I or or I actually need a holiday. You know, we need to go to Ireland, I needed to be flexible, I needed to be able to have that ability to just, you know, work potentially from the hospital a little bit. But generally I'm working from home wasn't as, as usual..
Lauren Fenton 22:27
What was the biggest challenge that you did encounter in those kind of early years of juggling?
Helen Gamble-Shields 22:33
When Finn turned two in his first nursery in Kentish town, which had been a really good nursery, we have had early years funding. But obviously as Finn's seizures have become more difficult, had the early years funding, but that stopped as soon as the child turned two because they could then get their education and health care plan. So in fairness to this nursery, they introduced us to the idea of this EHCP. And they said that that was you know how you then needed to go and get more funding from our local authority. They started it when Finn had turned two- it clashed with the summer months. So like nobody was there to do their flipping reports, right. So then they're supposed to do within a timeframe, it's legally required. And also there was cuts at that point in time. It just became a really, really elongated process. And eventually, they then did produce a report. And that report said that he needed a one to one. And we hadn't really anticipated that. I just don't think I was aware of these areas I just didn't know right. So then we also were really happy with the nursery. And we had said, Oh, we definitely want him to keep going there. He loves everybody. Everybody loves him. It's right around the corner from our house. You know, it's you know, that's where we want to go. And while we were doing all this Finn had turned two, he'd had so many complex seizures. He'd been in hospital so many times, Finn was on all the kinds of drugs that were for Dravet Syndrome, which are all very complex drugs. It's a concoction of about three main medications, but it wasn't really doing what it was supposed to do. You know, he had uncontrolled seizures, he was still going into status frequently, but a new drug was emerging for a trial opportunity. So the only things that was open to us we just we then embarked on this drug trial all at the same time as th like the EHCP we're starting this drug trials and things just turned to we're doing with the EHCP we are just embarking on signing the documents at GOSH to do this drug trial to help with the seizure control. The complexity of his seizures were just they were just changing just you know, just there and then you know there's nothing else coming on online here that is going to help him so we were frigging desperate. And then the nursery the nursery turned right and said we are refusing to be Finn's main setting on his EHCP I was like holy f**king shit..
Rina Tesclia 25:18
All this time. You're working the entire time.
Helen Gamble-Shields 25:22
I'm working the whole time. And well, okay, we'll go balancing it. But like at this point, Marcus had started his own business and got that uncertainty. Massive uncertainty as well. Yeah..
Rina Tesclia 25:34
I'm counting five different things of what you're going through at one time,
Helen Gamble-Shields 25:36
We were literally just crawling. And then yeah, when they said, then we won't be Finn's main setting, and they sent that letter they sent, because they sent it the worst, bit right, it was, they'd sent it to say, sorry, we won't be Finn's main setting. They also said, and you've got a four week notice by which point they'd already given it to Camden. So we had something like two and a half week notice of Finn being refused to go to that nursery. I was just so so friggin pissed off, because the letter was just like, his... just his needs are too much. They literally said he'd regressed. You know, nobody had said he'd regressed. It also said, we can't take him in our nursery because his seizures are getting worse. He's deteriorating. And it stresses our staff... Yeah. And also that just went through this friggin list of things like the nursery he's in at the moment is for toddlers, and he's getting too big and boisterous, though. He's going to go into the older children's, and then he's going to knock into them. And it's going to, it's going to basically hold them back was pretty much what it said. It was discrimination, right. And I'm so angry about it at the time. But I actually didn't have the friggin energy or the time, to do anything about it. Like I couldn't do anything about it. And I was just so pissed off. I was I was just, yeah, it was just so so shit. And so unfair.
Lauren Fenton 27:15
It's just so unfair like, I mean, like, we can talk about unfair all the time but..
Helen Gamble-Shields 27:21
So f**king unfair. And then I realised that suddenly this kind of thing started filtering through Finn's EHCP, that, you know, how am I going to get him into another nursery? What are we going to do? Where can he go? We had been allocated a really amazing key worker, I remember just going into your office and just frigging crying because I suddenly realised that there, I can't see how.... we can't work. We're being penalised for working and working and having a disabled child. And there is literally it seems to me that there's no other outlet. I'm like, This is the worst possible moment. That's happening right now. And we're getting no.. no help. I had to talk to IPSEA. You know, they're there. They they help, you know, kind of the legal things around..
Lauren Fenton 28:11
EHCPS and funding. Yeah, we'll put the details in the show notes. Yeah, they're charity, aren't they?
Helen Gamble-Shields 27:16
Yeah, they're a charity. And they have like legal advice and things like that. I mean, you can donate to them, apparently, you know, if you're so inclined, but they were actually very good as well. But they said it's very unusual for a local authority to give more than 15 hours to a two year old. But, you know, they are late and giving you the placement and everything and you know, they're in delay. You should push them and put your case to them. And they helped me write a letter, because writing a letter like that quite demanding, isn't it? But like IPSEA, and quite a lot of other organisations do have template letters. So, you know, I did kind of pen the letter. Yeah. Anyway, Finn was unwell was the middle of December, I think we'd got the, you know, he'd had seizures. We'd spent the night in the Royal Free was the 14th of December, the next day, my birthday. And then I just woke up in the Royal Free and they get the phone call, and they said, they've given me 30 hours. I went, thank you...God. And by that time, I'd found the nursery. And they, they'd agreed, and they'd given me advice and how we'd they could get the one to one, we could work some hours and balance that out. And, you know, we'd have to pay to cover the, you know, addition hours over that. But what it did was it kind of put it in something that was manageable. But it was the SENCO who had to kind of talk me through that, and how they done it for some other parents. And I kind of went well, again, it was a bit of a slap in the face like this is the most unfair thing there is that she's just given me the facts. And this is what we kind of we have, we have to do. So that was the 15th of December, it was like, Oh my God, that's the best thing that's just happened and we got we got discharged from the Royal Free and it was my birthday and it was my office Christmas party that night. Off I went to the office and my entire team were still in there, but I stopped there with them for two and a half hours and then we went to the restaurant and had our Christmas dinner.
Rina Teslica 29:50
I bet that felt so good! and on that note, lets' pause for a top up top here as it was was very positive, not perfect..
Helen Gamble-Shields 30:01
It was. It was a positive day! It was like a turning point in that day. Yeah.
Lauren Fenton 30:02
And it sounds like that. I mean, f**king hell to go through all of that. It just really highlights the challenges of childcare..
Helen Gamble-Shields 30:05
that childcare thing is such a conundrum. It was a minefield, like a minefield of you know what, what you could do, it just seemed that you were being discriminated against. Yeah, massively, you know, massively.
Lauren Fenton 30:20
What was that stat that Rina quoted? It actually costs on average three times as much as well. So you're thinking it's costing more to, like, you know, obviously, there's massive variance in that, but it costs you more with a child with special needs, and then you're being penalised.
Rina Teslica 30:30
Because you're wanting to go to work
Lauren Fenton 30:32
Part of that is because you having to pay for childcare, potentially, but the Yeah, all the additional costs around finding the right support. And like, everyone obviously wants to trust somebody with their kids. But when you've got somebody you need to trust with phoning an ambulance for your child, not like in a blue moon, or a rare freak event, but something that is likely to have quite common. And following a medical protocol. And then you have to go through a fight to get a place for that child in that setting. And the funding. Oh, I just it sounds horrific. I'm so sorry you went through all that Helen
Helen Gamble-Shields 31:11
It was such an amazing nursery. So it actually it was a happy ending. Yeah, like, really, it was a happy ending. And not long after the 15th. Like later on in December, they let us off the drug trial. And then we were actually switched on to definitely getting the drug, which was another bit of a win, but it was just a pretty pretty. It was just horrendous period. And actually, Marcus would still say he's kind of scarred, scarred from that. No, he would say, you know, PTSD, and although I was like, it's sustained, you know, it's not like it's Post Traumatic Stress Disorder is like, just keep ongoing stress disorder, you know
Lauren Fenton 31:55
You can still internalise that trauma and there are degrees of trauma that you can get through it sounds it sounds horrific,
But work was supportive all the way through?
Helen Gamble-Shields 32:14
Work was really supportive. And I guess, I mean, I know, I'm lucky on that, you know, that I was had been with that company for a while, and we were like a little community. And they were just, they were really supportive. You know, like, even my team were really supportive. They were all just lovely, lovely people.
Lauren Fenton 32:37
And sorry to interrupt but how, I guess I guess it's, to some extent, the support when you're in a more emergency situation I can imagine is there. These are supportive individuals that you've worked with for a long time, you know, you can't say no to somebody or be difficult about somebody going to meet the ambulance that's come to get their son, you'd imagine. But then the more kind of mundane stuff, how did you manage that? In that period, or post then the kind of therapies, the interventions, do you find that as easy and supportive to get through?
Helen Gamble-Shields 33:17
I think when you kind of, when you, you read the advice, don't use the Ask people to, you know, try to get your appointments at times that suit you. So I guess we're kind of fortunate in that we don't live that far away from our hospitals. I think to that point, and probably feel a little bit tied to London.. I ask them for separate appointments. So we used to have to go and get bloods for Finn, I would ask for that at 8 am in the morning. And then I would try and get some of the general...some of the other general kind of bits and pieces done at that same visit. We also had to do an echo cardiogram, which is you know, the, the scan of the heart. It's really I mean, that's horrendous because Finn would have been, you know, first of all Finn has ADHD, and lying down with Finn is like absolute challenge, right? So I would separate that echocardiogram from the other appointment, because it's just too much for a small child to deal with anyway, so I would try and get that nine o'clock appointment. And then if there were questionnaires or anything, I would go there after work on my own where I wasn't, you know, we're having to be distracted by Finn as well. And I will do them there. But I was very fortunate in that my work is only like 15 minutes away from GOSH, and also in those early years the nursery which was wouldn't have been by our house. But it was right beside GOSH. So I could actually get him to nursery by, you know, by about 1030 or 11 o'clock, and you could nip back and forth if you had to. But generally, I would have got those appointments in early. The only kind of thing around that was that the consultant part of that appointment could be at any point. So I'd be like, literally kind of going, "that consultant is causing me delay!" But then I'd have to, like, catch myself on because that consultant could literally have been in an ICU with a very sick child, right. And I'm going "or is he?!" But yeah, or her, you know, but and also, they're very busy serving small children, right. So I had to kind of catch a grip
Lauren Fenton 35:28
I love that you manage the shit out of it, though. I love that. But I like I, I never have been successful in...I'm better.,.. I'm better than I once was. But yeah, I love that you looked at different ways of doing it, I guess. So like, you break down the appointments, you and logistically make it work for yourself.
Helen Gamble-Shields 35:55
Yeah. It was easier to do multiple mornings in the one week than do it all at once. Yeah, that was like, that was like the least impactful on everything, including Finn. Because that's just to like, you know, I hope you know, he mean, he has ADHD, you know, he has ADHD, and we literally just be running around that CRF back and forth, you know, causing chaos. So, yeah, they, they would let us do that. And fair, and quite a few of the parents did it, actually. But you need to be fortunate enough to be nearby, right? Because if you're travelling to GOSH, you obviously can't do that.
Rina Teslica 36:33
I actually recently was able to so obviously, so my story is I'm now back at work, I took a six year hiatus because of having a disabled child and all of the shit that comes with that. But I just this week, so Lua's going in for surgery. And you know how you have to go in to do a pre anaesthetic assessment with with the anesthesiologist or whatever. And I find those appointments, such a waste of time, especially if they've been under anaesthetic at GOSH, multiple times in the last six years. So the woman called me on the phone like, "Oh, can you come in on this day?".. middle of the day.. And I was like, "No". And she's like.."well, if you don't agree, then we can't go ahead with the surgery". Bear in mind, the surgery is like, the most important surgery of her little life at the moment. Yeah. So I cannot miss it. And then I was like, "Okay, do you have an appointment after five?" No, cuz he doesn't work after four. And I was like.. "Right... times of COVID has changed the way things go, I want a video or a phone call consultation", I said, "because it's a waste of my time for me to come in and sit down and have a 10 minute chat. For him to just agree that she's fine for anaesthetic"... and she's like, "right, okay, I'm gonna have to speak to him". She called me back. 10 minutes later was like "Yeah, that's fine - we'll do a video consultation"
Lauren Fenton 37:54
It probably suits them more anyway if it's medically not an imperative.
Rina Teslica 37:58
No, not at all. COVID has like, yeah, COVID has massively changed massively. I've done this over COVID as well, because obviously self isolation and all of that stuff. Well, we had a couple of like, endocrinology ones where they wanted her to come in. But I was just like, No, I'm not going into hospital. Definitely. Not. And so now I know that it can work. And it's worked. And I will always ask for a video consultation. If I feel like there's no point in us travelling all the way. Not that it's far, but it's just such a waste. Yeah. So that I'm very proud of myself.
Lauren Fenton 38:41
Well done! So just to give my story as well. So kind of similar to you, Helen, I worked in the same organisation for over 10 years before Bea was born. And then, and I'd gone back there, and between Olivia and Bea as well. So I've kind of worked...maternity... gone back, went on maternity with Bea, took an extra year of like a career break - Work were incredibly supportive in terms of all the options of leave that I could take. I was fortunate enough that Patrick's could support us so I could take extra time off. But when I went back, I think I just felt so much guilt all the time that I was failing as a mother and I was failing in a work context. And I thought that maybe I couldn't think clearly about being as assertive with hospitals because it was like, well, I need to be there. And maybe as well because she was that much younger because it was a while back that I was less kind of savvy about what, how to navigate the system. Yeah, and what was required and what wasn't required, like, describe Rina. So I think I just felt I was kind of f**king it all up. So I was like when I, when I had an opportunity to be with Bea and do the appointments and stuff, I would try and navigate that with work, which, and I always found it really... Again, it was pre COVID. So I always found it really tricky. To, you know, it was always the appointments. And then if for whatever reason they'd always be, there was very little choice. And they'd be in the middle of the day at multiple different hospitals. So my job was project management, management consulting, and accounting, very, very sad to confess that I'm an accountant by background and I worked in finance and stuff. But I was fortunate in that I guess there was a level of seniority as well, where it was I had a team so I could tell my team and manage my diary and say, I'm going to be out this time. But then how, I think Helen referred to earlier, you kind of need to be there, you know, like, you need to be there with the team. And there's like a level of support that you can't give if you're waiting in a waiting room in a hospital. And then I always had clients and was expected to go to the client. Again, this is in the context of a work and you know, and people who I worked for that were incredibly supportive, but it just wasn't the work environment that that suited that level of flexibility. Maybe it does now post COVID. I don't know. I mean, it was interesting. I actually quit my job. Before COVID Have in mind. I paid job, let's be clear, I do lots of jobs right now. My previous career. And when I went in to have the meeting with my boss, she thought it was a discussion about my promotion trajectory. So my like route to..
Helen Gamble-Shields 41:46
So she didn't see it coming at all?
Lauren Fenton 41:50
No. And I think I think that's illustrative of a few things. One that it was like, it was an environment where there wasn't that it wasn't easy to sit back and coast and like, you know, coast is the wrong word, but it wasn't a sort of clock in clock out environment. There was an expectation that everybody wanted to push on in their career to move to the next level, you know, a very kind of corporate career driven culture. And, and maybe it has changed, I don't know, but but then I think it says a bit of a me as well, I think, combine that with somebody who's a bit of a perfectionist about what yeah, like, it sounds wanky, to say perfectionist, but like, I'm going to do something, I'm going to do it properly. And I'm quite ambitious and competitive and driven. So you put all of that together. And then it's very hard to strike any sort of balance or be able to manage that flexibility. I felt like it was so a lot of it was on me, you know, yeah, I couldn't figure out a way of like working flexibly. But I was working part time as well, which is interesting, what you were saying, Helen, about working five days, I managed to agree, an arrangement that worked three days a week for that period, which on paper was great, but then actually when the appointments come in, or the needs of the child are in those three days, suddenly, you know, you've got two weeks work where you're like, actually, I'm out that afternoon, and I'm out that morning and then so then yeah, the reality is, I would then flip my days and work other days. But I think eventually it got to the point where I was working kind of six days a week. I was travelling, I was going abroad. Um, and as just like the guilt was just just doing a gesture, which isn't great for a podcast, it was just mounting up and was kind of building inside of me. And yeah, it just I was waking up at like three in the morning thinking just wondering about Bea... what does the future hold, you know, all the... kind of thoughts. I think just night when I was having those thoughts and thinking what a terrible mother I was that I was outsourcing some of our care and yeah, all that shit. I And no one was doing as good a job as I could do. And that's it...there's the control freak perfectionist coming in. But yeah, as I was having those thoughts, I was thinking but actually, like some I had a moment of clarity and epiphany that I wasn't actually really enjoying my job. So like, hang on, why, why am I doing it? And yeah, I'm very lucky that I was able to make that decision, but why am I doing this job that I'm not really enjoying. And like sacrificing what I feel I should be doing for my daughter. It became kind of blindingly obvious. Of course. Now I feel like we're having walked away from that job. I don't have regrets about that. But my kind of identity was so entwined with that world. And that job for such a long time. It's really, I don't know, I suspect you maybe felt this for those six years. Rina, that kind of loss of identity other side of you that identity of more than a mum or way another role ir? Or carer?
Rina Teslica 45:37
Yeah, I had the exact same, so I had the complete opposite to the both of you. So once Lua was born obviously she was in hospital, as listeners may know, or not know. But she was in hospital for seven months until she stabilised enough for us to bring her home. And even then she was ventilated 24 hours a day, we had overnight care, which we still do...all the bits that made it impossible for me to go back to work, there was just no way that I could go back to work because my partner was obviously working full time in banking. So it's very much like a nine to five, office based, no flexibility at all. Even when Lua was born, he took two weeks paternity leave. And then I think just for his own peace of mind and his own sanity, I think he just found it easier to go back to work, concentrate on that, and be away from the hell that was going on in the hospital, and whether she'd live through the night or whatever. So he was concentrating on that while I was concentrating on Lua. And for the first three years, I was so into being there, being, the whole thing in my mind was like, I'm going to try and give her the best opportunity to survive and get to a point where she is independent. And so that was like my main goal. So then when she started going to nursery at three, even though it took me six months to leave her in the nursery, I went to nursery with Lua eight, six hours a day, five days a week, because I just could not let go. And I was terrified to just with the traccie and the bits. I was like, yes, okay, or trained people, but I just don't trust you enough. And that trust needed to be. So I stayed for six months, and then I suddenly had six hours a day to just do nothing. And that was the first time in up to that point three and a half years. Yeah. And I think it took me two years to like, get over the trauma, and to just understand everything that I'd gone through and make peace with it. And just be..and it sounds really cheesy, but be at one with my life now. Yeah, acceptance and just be like, right, this is this is it. And I think as we all know, like when you're going through hell, you just go through it and you don't really think you're kind of like a horse with the like, the I think the blinkers you're just going on and on and on and on and on. And it's years. And then once it's stabilised enough, you sort of go.. shit, that was heavy. And it just took me a while. And then the guilt from the other end is like shit. I've just, what am I? What am I doing with my life? Who am I? What do I want? Do I even know what I want? And all of those insecurities come up to the surface. So for me, it took a really long time to have enough confidence to say, right, I'm now ready to put myself in the working world and six years out of the working world. Massive knock to the confidence like you just don't even know what the working world is like. What is it like to even be in an office? Have things changed? What are people even like? What do you talk about? Because I've surrounded myself with the SEN community for so long. Yeah. Like how do you even have a conversation with somebody who hasn't gone through something so traumatic?
Helen Gamble-Shields 49:28
Yeah, how do you make friends with normal people?!
Rina Teslica 49:39
Exactly. It was crazy. But I am now a copywriter I work for I work in the beauty industry. It's fab and the company that I work for, I think because COVID has changed the way the working world is I think especially in the company that I now work for, they are so forward thinking in terms of like working from home and having flexibility, major flexibility. And I'm not talking about having flexibility for me, because I have a child is disabled, and they don't understand, you know, they're flexible with everybody. They're big on mental health and having mental health days. And I mean, here's a random fact, we've got therapy puppies coming into the office tomorrow!
Lauren Fenton 50:23
Oh, can I come and see one, please, I want to get a therapy dog. This is part of my plan. Anyway..
Rina Teslica 50:30
I will, I will tell you all, what kind of breed they are in the company and all of that. So it's amazing, they are and I think I was so honest with the director and my boss, in like, the initial interview stages, like, this is my situation, I'm going to need total flexibility. And they were on board immediately. And I think both of them had said, and they're women as well. So I think women just have a deeper understanding of what it is to be a mother.
Lauren Fenton 50:59
Look, we keep using the term work. And I like I don't believe that work is just these paid jobs or careers that we have like, there's shitloads of work that we all do. Yes, unpaid. You know, whether you get allowance for it, benefits for it or not, it's Shitloads that we do. And that whole thing about identity that you talked about six years of Rina, I definitely have gone through a lot of that since finishing my paid job. I think, yeah, I struggle with it still. But I'm trying to get better at understanding my value is not tied up to how much money I can bring into the household.
Helen Gamble-Shields 51:39
I don't know. I mean, I, I don't know, I frequently say I go to work for a break. And it's, do you feel like well, no, sometimes, sometimes you go, you feel like works a bit of a break, right? You can have like a hard, like a very challenging weekend. And you come into work, and you go, Oh, this is good. I can do some emails, I can achieve a few things. But I'm sitting on my ass doing it. Or I might be walking around a building site or something. But um, it's, you know, got a certain pace to it. It's within a level control. Yeah. So I'm just that sometimes it can be an easier option.
Rina Teslica 52:18
Right? Yeah, I think that is why Arbs went back to work so quickly. I think he needed that break away from what was going on. And work gives him that stability of like, and he's quite a control freak as well. So I think it worked really well. But now that I'm working, I totally see it as well. Like if I've had a long weekend with Lu. And then going in to the office, I always go in on a Thursday. So that means that I've done a weekend with her. And then Monday to Wednesday, Monday to Wednesday, I'm doing all the bits with her an evening or the bath and the feedings. And then on Thursday its a relaxed day. Yeah. Basically going into work is a reward. Yeah, I love it. I love it
Helen Gamble-Shields 53:10
Yeah, it can just be, it's a change as well, right? It's a bit of a change of, you know, routine that that caring role can be very demanding. And, you know, and there's a lot of kind of very repetitive or very extreme, different things, you know, and then you can go into work and in fairness, actually, I think, from having Finn and having such major trauma at very different points I deal with I deal with, like, you know, those challenges and work like, oh, right, okay, then we'll just we'll deal with that perspective. It's perspective, whereas I might have been like running around like a headless chicken before, you know, now I'm like, Okay, well, that sounds a bit challenging, but we'll just look at it for you. Yeah, you do. You just I think you grow as a person, right?
Lauren Fenton 54:00
I remember being - I used to do a call from from the nursery with, like the management team, and they will be gossiping, right? And having this like chitchat, but I was sitting in the cafe in the nursery going, "I need to go!".. it made me the most assertive kind of annoying for them to.. chop chop.."right, so is there an actual f**king action there?!" I wouldn't swear obviously... I might have done sometimes. You guys have never seen this side of me of course.. Rina?!
Lauren Fenton 54:40
I just but yeah, like that sense of perspective. And what's important, I think, really is great for like managing crises in the work environment and, and so I once sat down with..the organisation I worked for there was this I was put in touch ..we actually had a special needs parenting group? But I met the lady who founded that I remember sitting down with her when Bea was really small and talking about kind of coming back to work and what it was like, and she had listed all the skills that you learn as a special needs parent that are just so f**king valuable for any work environment. And can put, you know, the amount of navigating of systems and kind of persuasive skills that you need, the amount of assertiveness and the ability to deal with crises. I mean, you can like, I can't remember all the things on her list, but you can just, we can all think of things that you have had to learn how to do, that, clearly in all manner of work environments, incredible, incredibly valuable, but I just think. How do you convey that to people is, it's, it's great for your own kind of, I guess, maybe to build your confidence going back to work, but I'm not sure that people truly understand how much you kind of learn and grow and develop just..
Helen Gamble-Shields 56:08
.. by being a special needs parent. Exactly. I think, yeah, we need to tell them all they're amazing. And they need to realise this, right?
Rina Teslica 56:17
Yes. 100%!
Lauren Fenton 56:18
Yes, exactly. You ARE amazing. And you, you don't think of all the skills that you're building, even if you are having time out from work, you know, paid work in whatever job or field that you want to pursue. I think the other thing that I remember doing was so before I went back, after my kind of extended period of maternity would be I did actually shop around a bit and look at some other jobs thinking that maybe it wasn't the right environment to go back into that consulting environment. I remember getting the advice from one of the recruitment agents to not kind of lay it all out there.
Rina Teslica 56:59
I had the same advice recently, when I was looking for my job..
Lauren Fenton 57:05
I mean, yeah. What like, it's a really wanky phrase, but whatever happened to "bring the whole whole person to work" or whatever the f**king phrase is?!
Rina Teslica 57:13
I think, for me, he said to word it as if you were a personal assistant type role, because really, he he kind of implied that it's not looked down upon, but just "caring" doesn't have the same level of weight
Helen Gamble-Shields 57:34
Jesus, you'd think COVID would totally have changed that right?!
Lauren Fenton 57:38
Yeah, this is post COVID. Right?
Rina Teslica 57:45
Yeah. It's, it was just crazy. Crazy. But I mean, it, I listened to his advice, and I got interviewed. So things need to change, I think massively in terms of that
Lauren Fenton 57:57
Has it been better since COVID? Do you think Helen like with the context of kind of pre and post in the same work environment?
Helen Gamble-Shields 58:04
I think definitely post COVID Just that ability to be working at home and things like that is much easier. And that ability to have, as you mentioned, also, like just the, you know, hospital appointments by phone is like, that's fabulous right. But ya know, just even talking to you know, you can have phone calls while you're walking. You know, like, I remember doing that early COVID You know, when there was no help, and no schools like, I don't know, we've probably don't want to get into a COVID discussion, right? Because that's a whole different show, isn't it?
Lauren Fenton 58:38
Yeah, we'll do an episode on that.
Helen Gamble-Shields 58:42
That was horrendous. How are we supposed to work and try to look after you know, a child. You know. Finn doesn't watch the television!
Lauren Fenton 58:51
That must have been so hard. So that was COVID I guess Finn's back in school full time and does more face to face work? How is juggling all the different Helens now in this world?
Helen Gamble-Shields 59:06
Yeah, all the all the all the different types of Helen's.. God.. got help the planet right. But yeah, yeah. I guess like Mum Mum Helen, obviously Finn is back at school and I guess school is is normalising, you know, they are starting school at the proper time. He you know, rather than you know, starting late, he finishes the proper time we have school holiday so you have to just manage all of that and do the school drop offs and get the get the after school care and try and sort all that out and just me and Marcus taking turns to get into school we we try to get our exercise in by taking him to school, so we are like the freak parents who run our child to school w have like a jogging buggy that fits into he is getting too big for it. And you can see a few people looking at us going. You do know your child is pretty big for that buggy. But you do get a lot of street cred. You get a lot of people telling you. Wow, that's impressive.
Rina Teslica 1:00:05
So I have to admit it is a sight.
Lauren Fenton 1:00:09
You run up hill with the buggy with Finn in the buggy right?!
Helen Gamble-Shields 1:00:11
I know. Yeah, yeah. He is 25 kg. Yeah, so it's a bit of a it's, I actually reckon I'd be alright on a building site, you know, with those wheelbarrows just lugging things around. But yeah, that's how we get Finn to school. And, obviously, because it is a special needs school, it's not like, I don't know, my friends who work and have kids, you know, they have breakfast clubs, they have after school clubs, do all those kinds of things. Whereas special needs schools, they don't really, there's not really that.. there's no wraparound care and suddenly realise that wraparound care isn't really available to us. So Finn does, we do have about three different childminders or carers that look after Finn after school. So we do drop him off. So we do get to work, we take it in turns, three days, two days, and try to balance that out. Sometimes the meetings creep in and you have to do a bit of bartering - so me and Marcus do the bartering the night before which is generally over a glass of wine. I go "I accidentally got booked into a meeting tomorrow would you be able to do school drop off?" And yeah, sometimes it's fine and sometimes it's yeah, no, we've just then you're into a barney situation.. we do try to pre plan and try and do the same day through each week. But yeah, so we do try to balance that out. So we do do the school drop offs. And it is quite nice because you get to spend that little bit of time with Finn and he'll actually really loves going along the canal or, you know, running on Canal running through the park to school. You know, he does, he quite enjoys it. He just likes the motion. He likes the wind in his hair because he just gets the sensory feedback you know, so he does really enjoy it. I mean, like screeches down the canal and I'm like, the Ducks are getting freaked out Finn. But ya know. Yeah, we do drop them off. And that's kind of our big thing. And then in the evenings he has his carers who take him back there are actually teaching assistants from his school. So we did kind of, we lucked out there. He doesn't get bathed every night because I just can't
Lauren Fenton 1:02:23
not necessary!
Helen Gamble-Shields 1:02:28
Right. Yeah, it's not necessary
Lauren Fenton 1:02:29
It's like letting some of the stuff go, I think isn't that important? It's way too much pressure on yourself and the whole family. And you know, it's not it's yeah, it's priorities and perspective. Again, it just comes back to it isn't that. I think I'm really guilty of like, trying to do everything and having to like have a word with myself and you know, decide what's going to give because you can't you can't you can't you can't do everything the whole family is going to eat and what that everyone's had their nails cut like I did because these these nails get really long before like because it grows quickly they
Helen Gamble-Shields 1:03:15
I get freaked out by how fast nails grow
Rina Teslica 1:03:19
you know how I know when it's it's now cutting time is when Lua's got a big gash on her face that
Helen Gamble-Shields 1:03:28
they do scratch and they scratch you as well.
Helen Gamble-Shields 1:03:36
Water oh my god yeah, no that is the worst
Helen Gamble Shields 1:03:37
No yeah and then
Lauren Fenton 1:03:37
So you've got it sorted basically more or less than it sounds like.. nailed it!
Helen Gamble-Shields 1:03:43
Our big thing is we have to get meds you know, so like morning you have to do his meds evening you have to do his meds. That's the big thing, isn't it. So if we, you know you have to be home to do meds, or you have to set them up for somebody else to do the meds, you can write a dissertation on what those meds are mixing those meds, giving those meds how to give those meds if Finn doesn't want to take them. This is what you might have to do - that kind of thing. And then it's - he actually can't self settle. Finn to go to sleep. I mean, sleep is obviously a big issue we can all talk about. We could probably talk about that for ages, but Finn doesn't self settle. So we have to put him to bed generally every night which can take a bit of time. So I'll quite often sing to him and I can't sing. So that poor child has to listen to me singing..
Lauren Fenton 1:04:31
Do you want to give us a little rendition
Helen Gamble-Shields 1:04:33
No, I won’t Lauren, but I know a lot of songs. Yeah, yeah, it puts him to sleep. And it's like kind of some sort of self meditation sometimes, you know, and then you get that little moment when he falls asleep, and you're like, You are the most beautiful child there is in the world.
Helen Gamble-Shields 1:04:48
I don't want to go too negative, but like Finn does class, he has cluster seizures. So my big thing is, it's, it's the kind of the repetitive fashion of it. So, every couple of weeks, he will have cluster seizures, where he, you know, he'll have maybe 18 seizures during one night. So he'll start that up, you know, he'll go to bed until maybe 20 minutes after he falls asleep, he'll start having a seizure, a seizure. And, you know, they generally self- terminate, so they stop themselves. So there may be only last about a minute and a half. So we don't have to give him the kind of recovery drugs. But he'll have more throughout the night. So then, you know, Yeah, it's really exhausting for him. And he also can become quite, quite tormented through that period, because obviously, he's obviously having just little brain activity, probably right, right through the night, you know, but yeah, that's really exhausting. And then he just doesn't really sleep. So you don't really sleep. So. But you have to get up the next day, right. And he actually wakes up and wants to leave the house, he actually frequently wants to leave the house in the middle of that night, because he, he's so tormented by it, he kind of wants to leave as he wants to leave wherever you can see, as well as leave his body. He wants to leave the bedroom. And then he wants to leave the house. And he's like, we'll go down. He doesn't have the balance, right. So you have to be right with him, because it's really quite dangerous, because he's quite ataxic. You know, he's had poor balance he's ataxic, and especially when he's having this seizure activity. He he just wants to get out, or f**k out, right? Yeah, exactly. And his safe spaces as either like in his bed, which is clearly not safe space for him when he's not that well. So he wants to get in that the buggy, the buggy, safe space. So he will go downstairs and get in that buggy. And then he just, he will grab you and take you to the front door. Like he and then we'll get back in the buggy to go. "I want to go out!". And like it's three, you know, it could be like 2:30am 3am And you're like,
Lauren Fenton 1:07:01
Have you ever taken him out?
Rina Teslica 1:07:02
Yeah. Have you ever taken him out? Yeah, go on, be honest you have?
Helen Gamble-Shields 1:07:07
I've never done it like, past, like, 11pm. I've taken him at 5:30am. Like, I've taken a mic a couple of times really early. But I've kind of just gone no, we can't go out at this time. We, we just can't do it. We live in Camden for a start, you know, sometimes we stand at the window, and I'll look I'll go wow, the streets pretty active, you know, there's stuff going on. Or I bet you that car doesn't really, doesn't want me and my little son looking at them while they're probably doing something illegal. You know? It's the street rough streets of Camden. But he, ya know that that is he does that. And then we are I know a lot of families, you know, with epilepsy and our friends that we all know that, you know, that does happen that they just have bad nights. And then the next day, if he has settled enough, we'll take him to school. And we quite often take him to school because the school obviously has health care in the school. Yeah. And they're obviously trained to look after him if they know if he's going to be so upset in school, that they'll just phone us and we'll come get him. Yeah, you just have to you have to sleep with them. And you have to monitor them all. And also you have apps, you have like apps on your phone to monitor the number of the seizures, the length of the seizures, so that you can pass that information on so. So quite often, you can just wake up, you make sure he's okay, you roll over, you press your phone, you put the information, and then you roll back and you go to sleep. And you suddenly realise you can go to sleep between quite you know. So you get yourself in this kind of "I need to sleep" asleep, then you realise you've woken up, press the phone again. And then the next day you wake up and you realise press the phone like four times in two hours or something but you know, you went back to sleep for those like little 15 minutes. Sometimes you stay awake
Lauren Fenton 1:09:10
It's like your normal, your f**king normal almost
Helen Gamble-Shields 1:09:13
literally f**king normal for those days. And it absolutely sucks and it really sucks for Finn. And I'd quite like to get a better grasp on it. But at the moment there just doesn't seem to be the medications out there to do it. And he's also developed not eating for those periods. So he doesn't eat or drink for maybe two to three days. That's put us under a bit of crisis situation recently because he's been dehydrated twice to hospital admission levels, but we're trying to get that a bit balanced and we're about to go to see an eating specialist. He - we had tonsillitis, myself and him, last October, and I couldn't eat. But obviously I have the kind of the, you know, the, you know, I mean, I know exactly. Whereas he just went no, it hurts. I'm not eating it. Yeah. poor wee thing. Yeah, exactly. So he's kind of some sort of association. But when he doesn't feel well, that he's decided he doesn't want to eat or drink. So that's a little bit... So we've raised it with everybody. And, yeah, so we just have these bad moments for those couple of days, every couple of weeks. And you just get through it, right?
Lauren Fenton 1:10:33
It's all about learning..
Helen Gamble-Shields 1:10:36
You learn to manage it, right? I mean, I'm not. And I can go to work and be effective, like well not okay.
Lauren Fenton 1:10:44
I’m sure you're more than effective, impressive and excellent!
Helen Gamble-Shields 1:10:48
I'm probably not as effective. But I can go to work and function like the next day, but it goes over that period of time, you have to start to address it, you know, you can't keep going, you know, I might not do a 10k run that day, you know, or I might not run at all, and might drink an awful lot of coffee, and maybe eat a lot of Haribo or something, you know. So it's just all the little things you get do to kind of get through and then you just have to take it easy and possibly, you know, not drink too much to make sure you get good quality sleep and that kind of thing.
Rina Teslica 1:11:23
Helen, what do you do? Like, in terms of like, that cheesy thing of like self care? Like, what is it that you do for you? Because you're an incredible, amazing super woman, mother, the whole shebang? But what....running is 100% something that you do, but what else? When you've had those shitty couple of days? What is it that you do to take a step back and be like, right, I need this? What is it for you?
Helen Gamble-Shields 1:11:53
Um, yeah, it's probably just that chill out and the couch, maybe that glass of wine, just that literally just sit on my couch. And sometimes I think, God, I wish I can have better, I probably should spend a lot of money on a couch because my couch isn't even that good, right. But I do really enjoy sitting there with my remote control. I don't even watch decent TV because I quite often struggle to commit to a programme. So I literally just last night, I watched two episodes of Travel Man, and I really, really f**king enjoyed it. I just had a little glass of white wine. And then that wasn't like, post a massive seizure cluster, post a massive seizure cluster, all I really want to do is, is sleep.
Lauren Fenton 1:12:42
You guys are amazing, and how you try and strike a bit of a balance.
Helen Gamble-Shields 1:12:54
I do think, we've definitely got a balance. And I feel like we've had a balance for like the last couple of years. I mean, it's peaks and troughs at the moment, you know, we are, there's something new happening a little bit in terms of his not eating and drinking. But I think we'll you know, we'll deal with that. Because we know we've dealt with things before. And so it's almost that you've kind of learned through experience that, you know, you can hopefully solve these things. But also we've kind of accepted that, you know, Dravet Syndrome and you know Finn’s illness and condition is going to continue to chuck stuff at us, you know, and it's gonna continue to do that. So it's like, we can't plan stuff. But like we can like just try to. That's all you can do, right? Just try to just try and be flexible about it. And hope for hope for the best. Right? And cuz you don’t want to stop.
Rina Teslica 1:13:52
Amazing. Amazing. Well Helen. You've listened to our podcast and you know that we always end with a hashtag awkward. So what's yours?
Helen Gamble-Shields 1:14:02
I actually had quite a few of hashtag awkward I thought I can choose from, but the one I'm selecting for you is I told you that Finn frequently goes to the clinical research facility in Great Ormond Street. And he had a bit of a reputation when he was about two, three years old, of having quite a lot of seizures, and potentially while he was in there, so whenever we went in, the nurses were on on edge, because they aren't actually that used to having a lot of kind of medical emergencies. So there was one day Finn and I were in, Finn was in quite good for him. And we go to the toilet, and I've changed Finn, dones his nappy and everything. But I decided I need the toilet too. So I let my little toddler run, walk around the bathroom. The next thing is he walks over to the wall and I'm like no don't go out the door Finn don't go out the door. And he turns around, he hits the RED TRIANGLE. Right? Well, I am like, oh my god, the alarm goes.. massive alarm. And the next thing.... I am pulling up my pants and I am like standing there and there's about three nurses in the toilet. I went, he's fine! He's fine! I'm not though! It was quite funny.
Lauren Fenton 1:15:25
I'm sure. I'm sure they've seen it before.
Helen Gamble-Shields 1:15:29
They are nurses. They've seen it before. Right? They were just in shock because they literally just arrived to work. And the next thing is, boom, the alarms going off. And it's like, oh my god Finn's in the building!
Rina Teslica 1:15:42
Yeah. Amazing. That's so good
Lauren Fenton 1:15:47
Awkward moment!
Rina Teslica 1:15:51
Thank you Helen so much.
Lauren Fenton 1:15:41
Yeah. Thank you. Thank you so much for coming on the podcast and telling your story.
Helen Gamble-Shields 1:15:46
No, I really enjoyed chatting to you guys. It's good fun. With my wine.
Lauren Fenton 1:15:53
And finally to end Helen, what is your f**king normal?
Helen Gamble-Shields 1:15:58
My normal. I guess? Every day since Finn was approximately five months old. I have watched with "You can't stop the feeling" by Justin Timberlake on YouTube. And he is six and a half years old. So we are probably Yeah. Creating a lot of cash for Justin Timberlake.
Lauren Fenton 1:16:29
It's been amazing Helen. Thank you so much. Next time, we'll see you in the pub.
Lauren Fenton 1:16:36
Thank you so much for listening to the f**king normal podcast. We love making this podcast. Yes, we do. We are part of a much bigger team almost exclusively all parents of disabled children. And our goal is to reach as many people as possible and create a community of support for parents and carers who share our experiences.
Rina Teslica 1:16:57
So if you've liked what you've heard, please like and subscribe so that we can reach out to more people. You can find more information on this and other episodes at Fkingnormalpodcast.com That's f k ing normal podcast.com you can join us on Facebook and on Instagram at f**king normal underscore podcast. That's f k ing normal underscore podcast. You can get all the links and more information in the show notes below.
Lauren Fenton 1:17:21
So thanks so much for listening all the way to the end. We'll see you next time. Byeeee!
~Music continues “wake me up, loud as clouds, all my love for you”
