Brooke Trotter: Hiya and welcome to Brain Injury Bites, where we provide help and advice for people after a brain injury. My name's Brooke and I've lived with a traumatic brain injury since 2007.
Ashwini Kamath: Hi, I'm Ashwani and I'm a trustee at Headway Warrington. I'm also a Senior Associate Solicitor focusing on catastrophic injury, including brain injury.
Today on Brain Injury Bites, we're bringing you something a little bit different to some of the episodes we have been brought you before. And in this episode, we are focusing on the perspective of a parent of a child with an acquired brain injury. We're delighted today to be joined by Emma Pilling. Emma, perhaps I can hand over to you to introduce who you are and what you do and a little bit more about your son, Charlie.
Emma Pilling: Hi, thank you for inviting me. Onto brain injury bites today. My name's Emma as you've said and I have a six year old little boy, Charlie who suffered an acquired brain injury roughly at about seven and a half months, probably prior because it was due to hydrocephalus and if you don't know what that is, hydrocephalus essentially is something that, a blockage that stops the cerebral spinal fluid from leading, leaving the brain So that fluid can build up and cause pressure and that pressure can cause damage essentially to the brain itself, which is what's happened to Charlie.
So over the last five and a half years, I've been on a bit of a voyage of discovery. It's actually six months. At the end of this month, six years, sorry, even, since his brain surgery, and it has been a roller coaster and due to Charlie's illness, diagnosis, and subsequent sort of journey, It's changed my life, obviously our family's life but it's changed my career path.
I now am the Corporate Fundraising Manager for the Child Brain Injury Trust. I'm very proud to work for the Child Brain Injury Trust because they supported us and that's why I wanted to work in the charity sector because of the help and support they gave us. So I do feel quite blessed to work for the charity that, that helped us, that saved us.
And I'm quite passionate about other families possibly not having to walk that road alone. In the first instance because that very much was our story initially. It was, you know, pediatrician appointment on a Monday, Blue Lighted to Leeds on a Tuesday, brain surgery Wednesday, and released home with a pamphlet on Thursday.
No discharge meeting, no explanation, no real emphatic statement of your child has suffered a significant injury to his brain. It's been I would describe it as almost like Chinese water torture. It's been drip, drip, drip of things being told to us, discovering things by accident and it hasn't been an easy journey and I'm quite dedicated to making that story different for other people.
Ashwini Kamath: Yeah, I just wanted, we will be covering that journey in more detail in a moment, but I just wanted to pick up. On something you said at the beginning, how it's changed your life and your family's life. And just thinking about going back to our series one, where we looked at Brooke's story and who Brooke was before his collision and the impact on him, his family, and.
his life adjusting to post brain injury and no doubt a lot of what you do, what you talk about is obviously your journey through supporting Charlie and just trying to get lots of information but I'm curious to know more about you and your family life. Before all of this, because I think it's, it's that that kind of also brings a lot of the human side to the to the stories that we hear is, you know, you were somebody before you were mom of Charlie who has who had hydrocephalus, you were a Emma, you were mom to Charlie, you know, but you were many other things and I'm curious to sort of know more about you.
Emma Pilling: Yeah, Charlie is my only child. We had suffered loss before Charlie, so you can imagine very precious little boy did all the normal stuff during pregnancy, you know, where you basically map out your child's life until about 35 full He was never leaving home got him a place at university, was clearly going into the medical legal something, you know, really quite impressive progression.
And I think when you're pregnant, you do that unconsciously perhaps, you know, you, I mean, just having a child probably changed me because people will joke about me years ago, not very maternal. And I suppose naturally I'm not the person that, you know, someone brings a baby into the office and naturally you gravitate.
Emma Pilling: I'm not that person, but I think that's possibly because there's a big age gap between me and my brother, so I had a very real understanding of what babies did. They weren't dolls. They weren't cute. They cried. They were nappies. So, you know, I waited until later in life to have Charlie. I had a career in housing that I was very proud of.
I loved to help people. Quite often the people that people didn't see, and I really thrived on getting to know those people and trying to make their lives better. And when I had Charlie, I did the normal. Mum things, you know, I joined baby groups. We made friends. Charlie had a little girlfriend at music class.
We did baby massage. There was a lot of things that we did, just regular maternity leave, mum and baby stuff. And I think the hardest part of what happened, it was almost an unravelling because I tried to explain things. to my employer what had happened and, you know, flexible working, reducing days, compressed hours, medical appointments.
And I think because nobody really understands what acquired brain injury is and nobody's ever heard of hydrocephalus, people were like, well, it can't be that serious because I've never heard of it. And I did spend an awful lot of time because of the type of person that I was. I was a strong, independent woman saying, I know he's my problem.
I know I'm, I'm coping with some, I'm coping with this. It's okay. It's just, I need you to. Kind of understand that all my annual leave is being eaten up by appointments or whatever it was. So I spent a lot of time, I mean, I don't know if it's part of my psyche because I have to be in control, and I am, I'm a control freak, I don't deny it, I'm terrible.
But I just, for a long time, because it wasn't explained to me, I used to say things like, He's had brain surgery, but it's not real brain surgery, because he just had a shunt.
Ashwini Kamath: Can you just explain for our listeners what a shunt is?
Emma Pilling: So, Charlie has what's called a ventricular peritoneal shunt. The shunt, essentially, it's almost like a straw that sits inside his brain.
and takes the fluid that his body can't naturally direct down his spinal column. Normally your cerebral spinal fluid will recirculate up and down your spine through your head. Charlie's got a blockage at almost the bottom of his head, so the shunt is inserted into his brain. And drains that fluid like a straw.
Ashwini Kamath: I guess it was quite hard as well, trying to explain to your employers, you know, I need all this time, I need this flexibility. At a time when you yourself was trying, trying to figure out what it all means, because you weren't getting the information and support that you needed. That, you know, you're now in a position to be able to provide to others.
But at that time, you didn't know, like you said, you'd never heard of hydrocephalus. And it was just drip feeding information to you. So to then be in that, try to be in that position to explain it to others, to get them to understand why you needed the level of understanding you did must have been very difficult.
Emma Pilling: Yeah. And I think it's a conversation. That is uncomfortable for people anyway, and what I found, and understandably so, the illness of a child really makes people uncomfortable. The illness of a child, where it could happen to anybody, and you wouldn't know, just makes people feel uncomfortable. sad and vulnerable and uncomfortable.
So those conversations tend to be quite short. And like you say, when we left, he had his brain surgery at seven and a half months. I went back to work full time at nine months old. He went into nursery full time. He still had visible on the back of his head. And in some ways, I'm glad that I didn't fully understand, because I think if I had, the chances of me handing him over at nine months old to a nursery when he couldn't sit up, he was just, you know, in one position, and that amount of trust, I don't think I'd have done it.
On reflection, I think I was in shock.
Ashwini Kamath: Were you given any sort of follow up advice at all? Or, you know, just that feeling that, yes, you know, we're discharging Kim, but we're here, he will be followed up by anybody? Or was it just, see you later?
Emma Pilling: Yeah, he has open access to the neuroscience ward, but that is purely for his shunt.
So in terms of the brain injury, we had a pediatrician that saw him that first time and sent him over to Leeds, who kept hold of him for, he said, development. But again, the words brain injury were never used. emphatically stated to anybody. There was no signposting. There was no bridging between Leeds and our community services where we are.
And a lot of it, and this is possibly why I went on the path I was. I'm quite driven and tenacious and my way of dealing with a problem is to fix it. So I did a lot of Google. I did a lot of calling. I did a lot of email. I remember phoning somebody and saying, you know, this is the situation, what's available?
And the person on the other end of the phone said, when we prepare him for special school. And I said, you have never met him. He was born perfect and they broke him and you now need to help me fix him. So, No, that, that, that's not what we're doing here. We're doing something else. And eventually I rang the Child Brain Injury Trust from a Google and they said they'd bring me back.
And when they did, I think I must have been having a much better day because I said, oh, thanks for the call. But you know, I was just having a bit of a panic the other day, but it's all right because my son's got a shunt. They fixed him. So there'll be other children that need you a lot more than Than he does, but thank you for ringing me back.
What I now know is they have to check medical records before they can take family on. They have to check there's a diagnosis of acquired brain injury, and I vividly remember this person at the end of the phone just saying, right, okay, that's not strictly true. Okay, and we're going to unpack this because your son does have an acquired brain injury and we're going to discuss what that means, but that was the first person to lay that out for me.
Ashwini Kamath: I was going to say, was that the first time you'd heard that term acquired brain injury?
Emma Pilling: Yeah, and it's funny. Until I started working for the Child Brain Injury Trust, in the back of my head I always thought, what if I've misled these people? Because no medical professional has ever actually sat me down and said, your child has an acquired brain injury in this area, this area, this area.
And I kept thinking, I might have misled them. You know, I might have told them he's got something and he hasn't. I now know he clearly does. I've seen the scans and I know from. later appointments, but I think initially I felt a bit of a fraud. I was like, you know, she's saying he has, but how does she know he has, he might not.
And I think, you know, from a parent's perspective, it shouldn't be that way. And there's an awful lot, I think, with pediatric brain injury, particularly the viewpoint is almost wait and see, wait and see. If problems develop, wait and see if development's affected, wait and see if there's a problem. When clearly if someone's brain tissue is compressed to the extent that his was and there's, you know, slices in the brain tissue from pressure, it's injured.
It's, it's injured. You need to be doing that early intervention, but the systems aren't set up to approach the recovery in that way. It's very much a wait and see if a problem arises. we will deal with it. And I think it's only because I pushed and got people on board before that he's doing the things that he is doing because they didn't expect him to, but they didn't tell me.
And I think that's unfair, that level of
invisibility, I suppose, you know, you almost should be prepared for that, but then it's a balancing act because maybe if someone had sat me down and said, actually, there's this much damage, I wouldn't have pushed. I don't know. It's a very fine line, but I should have definitely heard it from someone other than a charity, I think.
Brooke Trotter: I can relate to that. So many things that you're saying, particularly about, you just don't have a clue, do you? You don't, you don't know what's going on at the start. I mean I remember the days of, yeah, it's, Literally, you'd been given a pamphlet and then told to go home, and it's, it's just, you know, we had literally nothing, I'd never even, I'd never even heard of a brain injury, and mine was like, what was mine, 2007 and we came home, we went from, well, Salford Royal, which was Hope Hospital at the time in Manchester, and then we went back to, my mum and dad's house, Scarborough where I'm from, and then, Scarborough's, you know, it's only a small hospital there, so we just, we just, tried to keep in, you know, with, you know, we didn't, we didn't, we didn't want to be in a position where we, you know, we were offered some help and then we refused it.
So they offered me, I got to the stroke unit and because I've had like weakness on one side, weakness on my right side, they were giving me like exercises to to sort of strengthen the album, so this is not helping at all, but we're just, we're just, yeah, just having to Google it all ourselves, and it's
Ashwini Kamath: I think that's it, it's the, with both of you, I mean, your direct experience and your experience as a mum, it's, It's that void of information of having to Google what does this mean rather than being sat down by somebody who just gives it to you straight that these are the things this is what these are the potential impacts that these could have and I mean we know you know from the discussions Brooke and I have had over the series that no two brain injuries are the same each brain injury is unique in itself but at least having some Kind of idea of this is what you could expect, or these are the things to look out for.
And if this change has come back, it just having that information. So you know that what you're experiencing it, you're not alone. And this is actually. The new normal. It's it's okay. These things are happening.
Brooke Trotter: A lot of the stuff was just like, especially when you Google it, you say you Google brain injury, and you get like the worst type of brain injury.
And it's just like, does not that does not relate to me. Google is not your friend. I do
Emma Pilling: joke that, you know, Google's one of those things, four clicks and you could be dead.
Brooke Trotter: Yeah.
Emma Pilling: Yeah. It's one of those things that you don't necessarily. If you Google Hydrocephalus, the pictures are horrific.
Brooke Trotter: They don't want to show you where, you know, they don't want to tell you how it's going to be alright.
You can get better from this. It's not going to be that bad. That doesn't get a click, does it? So you want something No,
Emma Pilling: and I think, you know, a lot of The images are from potentially developing countries where there is an intervention, but it makes you feel, or as a parent, it made me feel like I've been punched in the stomach.
It was really quite, Yeah, and I think there isn't an understanding, per se, of brain injury, like you've just said, Brooke, you know, people are trying to rehabilitate your arm, but they don't really understand.
Brooke Trotter: I think they wanted to do something, but they didn't know what, so.
Emma Pilling: And I think, you know, with Charlie, over the years, with education, etc, there's so many boxes that education wants to fit a child into.
Yeah, and Charlie doesn't fit into those things. One thing is brain injury has a massive crossover with autism of the traits of autism So a lot of children with brain injury some people refuse to assess which I think is unfair We were quite lucky eventually that his speech therapist and put in a really long document saying, you know, X, Y, and Z and he needs to see someone.
And when he got assessed, they basically said, yeah, it's most likely the brain injury. However, the traits are there. We need to scaffold around those. And the best way to do that is to give him the diagnosis. And that is simply because people don't understand brain injury. So, But then once you pin that diagnosis to him, then they're trying to say right, well the autism textbook says, if you do this, it will fix that.
But he's not autistic. Yeah. So I'm constantly fighting against the I understand what you're saying. However, he has a brain injury This is a this is a whole new ballgame and like you said, you know I try and explain it to people like Charlie is unique if you write a book on Charlie today You couldn't use it to help another child because his brain injury is like his fingerprint You will never find another child that has had the pressure in that formation that has damaged his brain in that unique way.
You won't. It's, it's him.
Ashwini Kamath: I think that's a really good analogy though, the, the fingerprint that, you know, because like we say, there's no two brain injuries that are the same. And I think that's it. It's, you mentioned before that education wants to fit him into boxes, but his brain injury means that he can't be.
put pegging around whole sort of scenario.
Emma Pilling: He's a million different things that make up him, but you can't just flick to page 37 and say, right, what we need to do is this, which makes it hard. It makes it hard for us. It makes it hard for the people around him. But, so, yeah, I think education is geared up to have set ideas, possibly.
And we fought hard for Charlie to sit outside that. So, for example, Charlie is in a mainstream school. He possibly, on paper, has some of the most complex needs you've ever seen in a mainstream school. He's classed as non verbal. He's got more words now, but it's what they class as a lack of functional language.
So you can ask Charlie questions and have a conversation, for example. He, he's not really able to articulate if he's in pain or cold or hungry and things like that, but he can label things. He's partially deaf. Again, something that came up later than we would have liked. And again, something that I've learned with brain injuries and Brooke, you've probably found this.
People tend to rely very heavily on writing everything off to a brain injury. So when I was saying, are you sure he can hear? You know, are you sure that he's not there? No. No. He's fine. He turns around when we say this and he does. And eventually I asked his new speech therapist, I said, are we sure we shouldn't check his hearing?
And at the time, I think he was about three and a half, and she said, has no one done that? And I said, no, not since birth. He passed at birth, but obviously the brain injury happened after. And she said, well, we'll look at that. That's normally the first thing we check with a nonverbal child. And it came back that he has high frequency hearing loss, which is generally associated with illness or something post birth.
Brooke Trotter: What does that mean? High frequency?
Emma Pilling: Yeah, it basically means above certain frequencies. So Charlie can't hear fire alarms and smoke alarms. A lot of the speech sounds, so like, sss, and fff. He can't hear those, they're too high frequency for him. He has hearing aids, but he won't put them in, because he's stubborn.
He lip reads, but we didn't know he was deaf, so during lockdown, obviously masks. He was frantically.
Brooke Trotter: Oh, nightmare.
Emma Pilling: Yeah. So now we know. And when we found out immediately it was a case of Sunflower lanyard on when we were out and, you know, if people had something to say, trying to explain, look, he's Definitely's got a brain injury and he needs to lip read.
But it was that thing of thinking. He's got an acquired brain injury, so that's why he's not speaking. So hindsight's wonderful, and that's why we share our story, so that we can say to people, look, this is what it looks like, or this is what might happen. And, you know, just to give them that A little bit of awareness and support going forward, I think.
Brooke Trotter: Did you find that, like, the dismissal thing to be quite awful, really? Because I got the impression that, like, some doctors, they're kind of, they're busy. And I remember I got diagnosed with like, partial sight. And they told me I was, like, I can't see much on my left side or below. And they just sort of said, like, oh, you know, he's partially blind.
Next patient, you know, get on with it, go finish your life.
Ashwini Kamath: I guess there's also dismissal because, you know, you're coming at this from the perspective of a parent and as a parent, you're the best person to know your child and what's normal for him and what's not normal for him, what's new for him that hasn't presented before.
So were you kind of coming up against that dismissal, as Brooke says, from a medical perspective that, well, no, we're, we're the medics, we know More about this.
Emma Pilling: And I don't think it's purely within the medical community. It transpires from my experience that most professionals that you come across in this new walk of life assume that you're in some way uneducated.
And I remember saying to someone once because they were like, you don't need to know that. And I said, I need to know everything. Yeah, I'm his mother. I said, I now know about brain surgery, so please don't tell me what I do and don't need to know when it concerns my child. I need to know everything. And some of the attitudes are a bit like, well, you know, you don't understand that.
And I remember saying to someone in an email, you're absolutely correct. I don. Because it's not my forte, it's not my speciality, it's yours. However, I'm intelligent enough to know that when you don't know something, you come to the people that do, and you ask the questions, which is why I'm asking you, I would expect you to help me, but I know they cared.
And I know they. They treated him with compassion. They kept his hair and they popped it in a little tube and when I went to recovery to pick him up, the nurse said, the doctor, the surgeons left this for you. And I remember at the time, obviously being in shock, thinking, why are you giving me a test tube of hair?
What's that going to do? And she said, he said, first haircut. And I was like, wow. Yeah. Yeah, no one's ever touched his hair. And, you know, his stitches are so neat on his tummy and his head. So I know that when he looked at him on that table, he looked at him as someone's baby. Yeah. I know that he realised that he was seven months old and he wouldn't have had a haircut.
And I know when he came round on ward rounds and I said thank you to him. He was just so humble, almost, he just shrugged and said, First haircut, he's a baby, it's what we do. So, to an extent, I know that in his case, it's a routine, and he's amazing, and he did a wonderful job, but I think to him, that other side of it, It's almost that silo thing.
He takes care of that shun, and he's always done it wonderfully. But the stuff that goes after that isn't his thing, a bit like the forte's that I was talking about before. So, to him, he'd fixed the problem that he'd seen. And, so, would he have? told me at that point that Charlie had damage. I'm not sure.
I'm not sure whose job that would have been, but equally I have sat in front of medical professionals. that have been quite disrespectful to me and have made me feel dramatic or wrong or I think, you know, we raised a concern with the NHS and when the complaint response came back, I think one of the lines that will always sit with me was, it is difficult to ascertain how much mum understands.
Brooke Trotter: You're a number, aren't you?
Emma Pilling: And I was so upset because I'm a little feisty. I said, right, I want to meet you. And they said, who? I said, anyone who put their name on that document and signed it is coming to meet me. Because we're going to establish how much I'm capable of understanding, because before you wrote that sentence, you didn't bother to speak to me.
Ashwini Kamath: How can you understand everything if you're not even given the information in the first place?
Emma Pilling: And, and I think that is the thing that kind of, you know, stuck with me is that assumption of incapability. That assumption that you accept the status quo, you take what you're given. And I suppose we wanted to send the message out of actually, no, you know, your child's got an acquired brain injury, but they deserve better than the status quo.
They, the way I always look at it is. He deserves me to give him back the potential that was lost. Now where that takes him, what that ceiling looks like, nobody knows. Professionals, us, nobody. He does. And one day he'll reach his level and that's fine, but I think for professionals to I assume he's incapable for professionals to pop him in a box and write him off.
He's unfair, you know he's got a future and I think he deserves for that future to be supported and scaffolded around to make it better. The best that it can be for him, it shouldn't just be thank you next
Brooke Trotter: on some levels that has to happen because there's such The amount of patients but it just seemed I just remember thinking it was very cold that They were just like
Emma Pilling: It's quite mercenary because that's something that is going to change your life Forever and it deserves more than a clinical.
Yeah, you're right. You can't say Yeah, you're right. You've got reduced peripheral vision.
Brooke Trotter: There's a pamphlet, but you can't see it, so you probably won't be able to read it. LAUGHS
Emma Pilling: It's that thought process!
Brooke Trotter: Yeah.
Emma Pilling: You need something where it's humanity, that's the way I describe it, and that's the way I always say why the Child Brain Injury Trust has such a part of my heart, because they're human, and that humanity was what helped us deal with it, because the thing is, your child has brain surgery, your child has an acquired brain injury, and all of a sudden, you don't actually probably realize it, In our case, I mean, if your child has suffered an injury because of an accident, it's probably more apparent in that moment that your child has suffered a major injury.
In our case, we went to a routine appointment and then you know, this chain of events happened. And it was all so low key, apart from me throwing up in an ambulance, that, I mean, I think my brain protected me a little bit and put up a few walls after the event and said, yeah, you don't need to remember that right now because that's quite horrifying.
But in essence, initially, I don't think we even realized the extent of what had happened. So when you say about us before, we came out of that hospital thinking, right, life just picks up now. He just needs to catch up. His head needs to get smaller and he needs to catch up. I think that was my thought process, which is bonkers now I think about it.
But we did, we hit the ground running and we just carried on. But in actual fact, with a brain injury, your life's just smashed to pieces and there isn't, Anything that isn't going to be affected by that, your relationships, a child's development, you know, their education, their social, you know, the babies grew up with a baby group are all developing so much differently to him.
And it's, It's a little bit heartbreaking.
Ashwini Kamath: Yeah, and I guess as a parent, you know, like you were saying before, you had his life mapped out to age 35, and as a parent, you want to do everything you can to protect your child, but when something like this happens and it's completely out of your control, and everything that happens thereafter is out of your control in terms of his development, it, it must be really quite difficult to, and then when you're, you know, on top of that dealing with a bit of an information void just to try and get to grips with how do we do this?
And you know,
Emma Pilling: I think there's a grieving process if I'm honest, and that's the way it was explained to me later. And There is also guilt that sits with that I'll be honest because society will go oh well he's all right now
because they can see this child and I'm very biased but he's beautiful so he doesn't look like brain damage should look to someone.
Ashwini Kamath: Yeah, I think Brooke can probably relate to that as well, can't you?
Brooke Trotter: Do you find it's a bit like isolating as a family as well, because you, you all, you go to these appointments, you know, you, you know, as you said, that you don't know anything about it at first, but then you become quite sort of an expert on the brain injury, the process of brain injury, and you go through all sorts, don't you?
And then that kind of isolates you from everybody else, those around you, because they don't know anything what you're talking about. But to you, it's the community, for the community, if you It's, it's just, that's very, very normal, but for anyone else ain't got a clue what you're on about.
Ashwini Kamath: Yeah, and I think as a society, we sort of look at, you know, like you were saying, it's easy to see in some cases when somebody's injured.
And we've talked about this before is if you've got a broken leg, it's an easy to see. obvious injury to point to, but with brain injury often, you know, you're dealing with the walking wounded. It's like, well, you look fine. There's nothing wrong with you. You're walking, you're talking, but actually, no, there's a lot that's changed and a lot of things that people struggle to deal with.
But a little bit about what you were saying before as well, that, you know, you kind of want to fix things. And I think society can be like that, that, you know, well, you're sorted now, carry on.
Emma Pilling: And I think the people that you are surrounded by, family, friends, co workers, employers, it's a very kind of narrow perspective.
You know, your child's had surgery, ergo your child is fixed. You're at work, therefore this can't be a bad situation. , and those conversations, I remember saying to someone once, and it was, you get to a point where it's very matter of fact, because You're living with it and just there's a couple of instances that stick in my mind I remember one friend saying God you take a lot of photos, don't you?
And I was like, yeah, but I didn't used to But I faced almost losing my child. I still could I could wake up tomorrow His shunt could fail and it could all be over So I document everything. I celebrate everything and I'm not sorry. And the look on her face was just like, huh. And then I almost felt guilty and I was like, oh, I'm sorry.
It's just that, you know, we, and I think during lockdown, I said, To one of my managers, you know, I know people might think this is strange because he's a medically complex child. But we just want to get back out there because we cherish every day and we make the most of it and we have plans. And, you know, when tomorrow is not promised, you can't waste today.
Brooke Trotter: Because you've been through this, this massive journey, hate that word, but you've been through this massive journey and yourself. And then. to try and convey that to other people. It's just, I guess people are just embarrassed, aren't they?
Ashwini Kamath: Yeah. And I think as well as a society, and maybe this is more kind of a British thing, you know, you, you ask someone how you're doing the standard responses.
I'm fine. Yeah.
Brooke Trotter: You don't prepare for anything else.
Ashwini Kamath: but, you know, I think it's right that you have to be honest about it. And you know, what you were saying before, that if. If, if tomorrow's not promised, you know, you have to take every moment, you have to celebrate every step and I think it's important to do that because yes, Charlie, you know, is now living with the after effects of his brain injury, but he is still Charlie, he's still making progress in his own unique way, and it's important to celebrate that.
Emma Pilling: I think it's important for us to recognize that Charlie's just a little boy and he deserves to be a little boy. Yes, he's a little boy with 12 professionals that surround him and numerous appointments, but he's a cheeky, determined, lovable little boy. Everybody who seems to become involved with him just loves him.
adores him. He has this effect and I think that's lovely that Charlie is almost educating those that he comes into contact with. Several people have done fundraising for various houses because of Charlie. People have changed their processes. because of Charlie, you know, children are a little bit more aware of what difference looks like because of him.
And I think that's quite special. So when we started to share his story a little bit wider, I think it was more to say to parents, do you know what? You might have a bad day, but it's not a bad life. You know, it, It's a different life. It doesn't make it bad. And everybody has bad days. Absolutely everybody.
And actually, because he's delayed, because things look different, have I seen things that other parents probably overlooked? Absolutely. Because I'm always paying attention.
Brooke Trotter: Yeah.
Emma Pilling: So, you know, it, it's not always, bad.
Brooke Trotter: It's good that he's in a mainstream school as well, isn't it? You know, rather than being hidden away in a special school.
Emma Pilling: And I think, you know, we're, we're fighting against the tide, if you like, with that, because there is a push to say, you know, shouldn't he be, not from people around him, but society at the moment have got a bit of a push around if you've got special educational needs, then you need a special setting. In Charlie's case, in my mind, I mean, there will come a time probably when he will, but what we've always said is we'll be guided by him and school.
And we've got a very, very good relationship with school and open communication whereby if there was a problem, They'd absolutely come to us and tell us, but because of them, because of the support from his support assistant, he can read now and that's amazing, you know, and it, it makes no sense. This nonverbal child can read and he loves to read and he loves books and his support assistant adapts.
the curriculum to him. So whereby some parents might say, well, you know, he's sat in a separate area. I don't think that's right. Actually it is. It's right for him. Yeah. Because He has open access to that classroom whenever he wants to and he can go in whenever he wants to but he also has His own desk space, his own little rocking chair, his own whiteboard, his own bookshelves, his own cushions, teddies His support assistant goes around the charity shop buying him jigsaws to help him regulate and he loves school and he loves school in a way that works for him and the children are so supportive of him and they come up and give him a hug in the morning and they invite him to birthday parties it's not always his thing and he never ever goes into the Party room and blows a candle out, but he's there.
Ashwini Kamath: Yeah.
Emma Pilling: And I think, you know, for those children as well, that's important.
Brooke Trotter: That's what I was going to say, for the kids it's a really good thing.
Ashwini Kamath: Yeah, yeah.
Brooke Trotter: So they're involved in it, yeah.
Emma Pilling: And his wraparound nursery just adapt to him, so he's there for half term this week. And he's in the preschool room, because that's where his learning level is at.
And that's where he's safer. He can't go on the trips with the other children right now because he doesn't understand that. And it would overwhelm him. So he's playing with his friends in preschool and that's right for him. And this morning he ran into his carer's arms and she lifted him up so he could wave goodbye to us.
And he's having a great time. And you know, when we moved him to that setting, it was so scary, but the amount of effort they put into understanding him talking to people and. You know, I think him being in that mainstream setting and in that wraparound is good for everybody because brain injury doesn't mean that you need to be locked in a room somewhere and doing things differently.
Actually, the neuroplasticity Getting a bit technical here, because I've learned a few things. It tells you that there's an ability to remap that brain, but if he doesn't see neurotypical behavior to learn those processes, then that remapping won't happen.
Brooke Trotter: I like that he's, he's almost got like his own chill out room, the ability to chill out if he wants, because I've been in, like, all I've wanted to do, I mean, it happened to me when I was at university, and all my main, The thing in life was to get back out drinking with the lads, that's what I wanted to do, just re join main society.
But like, every time I sort of tried to do anything like that, it just overwhelmed me and it made me really depressed because I didn't understand it, but Yeah, quite often you want to just, you want to be out with your mates, but you want to just, you want to just nip to your bed for five minutes and then come back.
But I think that's perfect, what he's got.
Emma Pilling: I mean, it's so special the way that they've created this space over time. And for the first couple of years that he was there, it was in like cloak rooms. Right. But when he moved to year one, and they didn't know whether he would take the change. permanently deferred so he's kind of a year behind but he is a summer born as well so it was a bit of a perfect storm and when he moved down to year one his support assistant took a lot of time to think about how do I make this work so she almost created as you say like a chill out area a safe space using the whiteboard and the bookshelf with all these things on but then cushions lots of cushions and teddy bears and things that just make him feel safe and nurtured.
And I think to me, mainstream education can work as long as people take that time to understand the person that they're supporting. And as I said to her once, I was like, he's very, very lucky to have you. And she just said, no, I'm lucky to have him.
And I think, you know, I said, but you, you change what you do for him.
You understand him. And she was like, No, we're learning together, aren't we, Charlie? And I just think that's all it needs to be with brain injury. It's accepting that things are going to be different, but not being afraid to approach them differently. Because, you know, another parent said to me recently, you know, there's a shortage of special school places for reception, and parents are really worried.
And she said, why don't you show them, Charlie? She said, I think they've lost a little bit of faith. in education. Why don't you show them it can work? And I was like, well, that's what we're trying to do. We're trying to say, you know, actually there's no reason to say he can't go to mainstream school.
There's a, he goes to theme parks, he goes to theaters. There's no reason to say he can't do those things as long as you put little bits of scaffolding in place along the way. Like you say about going out with your friends, if you had almost like. a breather in between where you are, they found somewhere that maybe had quieter spaces that you could reserve that would be out of the main busyness of a pub, you know, just finding those ways to do what you want to do, but do it in a way that works for you.
And that's kind of what we're trying to do and what the people around Charlie are trying to do. And I'm really proud of them for that. It's those little things of understanding that inside there, you know, he can learn, he can grow, he can change, and it might, it might look different, but it doesn't make him less.
Ashwini Kamath: Yeah, he's succeeding against his own benchmark, I guess.
Brooke Trotter: One thing I think is important to say as well, picking up on his support worker as well, something that I've obviously read different times, Charlie, but. Something that I've always really appreciated is anybody who's taken a bit of time to, like, educate themselves and read up on the condition and, yeah, and you always really remember them people and it's people who, yeah, people who go that extra mile and make a bit of an effort rather than just thinking, you know, what's wrong with you, you've got brain damage and, yeah, kudos to them.
Emma Pilling: Because it, it means a lot and she really has. dedicated herself to him. It's so lovely to watch them together. But actually he used to have two, which was her and her daughter, which is quite a family affair. And her daughter has now gone to work at a different setting, but we still see her.
Regularly, we saw her at the weekend. We went to the Eureka Children's Museum and he adores her and she's one of his favorite people and I think, you know, like you say, those people that just become invested in you and your outcomes and making things better. I call them Charlie's Angels.
Brooke Trotter: Yeah, there you go, perfect.
Emma Pilling: They absolutely are, you know, this, this line of people that through his life, just nurtured and loved, and those people that take that time to make it work for him, without just simply saying, this isn't the right place for him, let's not do it. pushing somewhere else, the people that try to understand and do the training and make the differences.
It's life changing, it's life saving, you know, he's a different kid because they've taken that time to educate themselves to be able to educate him.
Ashwini Kamath: Thank you Emma, I think that's It's been really insightful. I'm going to admit, I did actually shed a tear, especially when you were talking about the first haircut.
But I think, you know, I know I took a lot from that in terms of the perspective of a parent trying to navigate your way through this complex world, through an information void, trying to get as much as possible whilst also trying to just maintain a new normality for your child and, you know, learning from him, growing with him.
as he progresses through his development, so thank you very much. We will be returning to to chat to Emma to look more at support that's out there you know, you've talked a lot about some of the lack of support that you had at the time, but you're now in a situation where you're working for the Child Brain Injury Trust, so the support that they can provide to parents going through similar experiences, and very much.
The sorts of ways in which support and understanding and more awareness around acquired brain injury has made a difference to you and your family, so we'll be covering that in another episode. But for now, from Brooke and myself, I'd just like to say thank you very much.
Emma Pilling: Thank you for having me on the show.
Ashwini Kamath: Please don't forget to follow, subscribe and share our content. If you do have any suggestions for topics that you'd like us to cover, why not drop us a line at hi at braininjurybites. co. uk.
