BIB - Emma part 2
[00:00:00] Ashwini: Thank you for joining us for another episode with Emma Pilling. Emma is Corporate Fundraiser at the Child Brain Injury Trust and is also mum to Charlie, who we discussed in the last episode and their experiences since Charlie's hydrocephalus and acquired brain injury diagnosis. So last episode, we were talking a lot about your experiences as a parent going through that.
And one of the things that you were talking about was the lack of information and follow up support at the time and having to find all of that for yourself and how much learning you've done since then. But through that, you became aware of the Child Brain Injury Trust and you now work for them.
And so, what I wanted to talk to you about today was just the sort of support that is out there for parents who might be going through something similar to what you went through six years ago and how that support, that understanding the awareness can make a difference to people's lives. And you know, I think towards the end of the episode, last time you were talking to us about just the difference that, you know, the accommodations that are being made in Charlie's school can really make to him and to you and to the children around him as well in terms of learning about Charlie.
So I think I'd like to pick up from there really. So, perhaps you want to just start off with telling us a little bit more about the Child Brain Injury Trust, who they are, what they do, and how they support parents such as yourself.
[00:01:33] Emma: Yeah, so the Child Brain Injury Trust was my luckiest Google.
I think they were probably the first step on our understanding path, if that makes sense,, and through them, we did find other charities, which I'll talk about later. But essentially, they support any child that have suffered a childhood acquired brain injury. And what that essentially means is any child that's had a period of normal brain development and then the brain is injured after that.
So that can be like Charlie through illness. I've met other families where children have had encephalitis, meningitis, brain tumours, and also children that are affected by injury, road traffic accidents
So the Child Brain Injury Trust has, I think at the moment, about 22 acquired brain injury coordinators and they work in different geographical areas and in 19 major trauma centres in the UK. And their role is to support the family and the child. So, not just the child and the child's needs, but also helping that family to accept, understand, adapt.
And that was probably the first real thing they did for us was to take us through that path of grief and acceptance.
[00:03:22] Ashwini: I mean, I think the very first thing they did for you was to actually confirm that Charlie has an acquired brain injury.
[00:03:28] Emma: Yeah. And through that, you know... My Nana always used to say, ‘You can deal with what you know’. And I think that's very true. I think, you know, there's a certain power in having the facts.
And I do vividly remember her saying, we take this at your pace. I'm here as much or as little as you want me because, you know, I think as a charity that humanity shines from them and they understand that brain injury is one of those things where for six months everything might just go quite swimmingly and then all of a sudden you need that support again so they never go away.
And I think that's quite unique and quite special. You know, they accept referrals up to 18, but there are still families and children in contact with the child brain injury trucker children that are now in their 20s. Because, you know, that need for support doesn't just end with saying, yes, your child's got an acquired brain injury, or yes, your child's going to need physiotherapy.
Because the way it was explained to me initially, um, by the Child Brain Injury Trust was the brain at Charlie's age as it was, was developing and it had a number of things, almost like sleeper cells. that haven't come online yet. And over the course of the next 18 to 20 years various things are supposed to kick in and work.
One of the ones is like logic and reasoning I think in your mid teens. And the way it was explained to me was, we won't know if it's broken until it doesn't work. There's no real, there's a way of saying, right, this part of the brain was damaged, but in Charlie's case nearly all of the brain was damaged.
So there isn't a way of saying, oh, actually, it's just his language that's going to be affected, or it's just his motor skills. It was everything. So for someone to say to you, actually, this isn't going be a quick sort of journey for you. In the next 20 years you're probably going to have several periods of time where things don't go like they're supposed to and at that point you can pick up the phone and we're here.
Um, so they work within the hospitals, they will deal with schools, um, Charlie's ABI coordinator has been into various nurseries and schools and supported people with understanding his behaviour, his complexities.
The most special thing for me was they never approached this with a maintenance viewpoint. They never said, you know, we're just going to work out how you manage your diary with all these appointments. Or we're just going to tell you what it looks like in black and white. They look to a future and they still do, and they still look to making it better. Giving Charlie and the children that they support the best life that they can have, not just a life because they deserve more than that.
We were referred into something called the Rainbow Child Development Centre when he was quite small. Um, and basically they do a developmental assessment and things on your child and look at where there's delays. And we were very lucky that the lady that did these assessments just saw the need and she was putting in referrals left, right and centre, God love her.
And she was like, he's going to need physio, so I'm going to refer him now. He's going to need portage. It's a long waiting list. I'm going to do it now. So because of her, he was probably through the door so much sooner than he should have been. Then on the back of that, you know my oldest friend is a teacher in a SENDCO. So she was feeding me information in the background. I think he's the first child to have like a SEND plan at one. We had some funding at one.
[00:13:29] Ashwini: Special Educational Needs and Development. Sorry for just, uh, yeah.
[00:13:34] Emma: She was saying, you know, he needs to be on this specific tracker that will show his delays. She said it's a really rubbish system, but you've got to prove he's failing to prove he needs help. So get all your paperwork.
So by the time portage even came through the door and they are kind of an early year support service for children with developmental needs. We already had stacks of paperwork. So by two, we'd applied for an education and health care plan, which apparently is also wickedly early. But you know, we weren't going to let this thing lie. We were going.
And the Child Brain Injury Trust actually had input into that, into, you know, some of his needs. And I did an awful lot of e learning with the Child Brain Injury Trust, um, and some of that still I quote to people now because it helped me understand him.
I remember them doing a session on the upstairs and downstairs brain, um, and that when he is panicked it's his downstairs brain. So it's like being on a plane, doing a crossword, and they tell you you're going to crash. So you brace, and you throw your crossword in the aisle, and then the plane lands safely, but you're still in that flight or fight, and someone passes you the crossword and says, so what's 12 across?
Your logical brain isn't working, so don't try and reason with him in a logical way. Make him feel safe, and then try and You know, use logic because at that moment he hasn't got any, he's trying to stay alive in his world. Um, so little things like that helped me deal with kind of the new reality, the differences, because all of my friends were on the normal.
developmental path with their children. All of the baby books have set milestones that my child wasn't going to meet, didn't meet, didn't look anything like my motherhood journey. Um, and through going on sort of virtual training courses, I then remember being in one and it popped up someone was from Shine and I thought, Oh, what Shine?
Um, and it was the spina bifida and hydrocephalus charity, and I thought, Oh, I've never heard of that before. So Googled, joined up, Charlie got a lovely little teddy bear. Um, and they now have a thing called the Shine Little Stars, which is a community for the under 12s, essentially, where you can get help and support for schools and nurseries, and they'll tell professionals what to look for with shunt failure. They did a lovely little presentation for Charlie. And they actually asked me for pictures of him so they could personalize it, which I thought was really lovely. Um, and then. Like I say, we, we went through the highest of highs and the lowest of lows, and I think you're on a progression where until you've fully made your peace with it, there's some quite painful times, and there's painful times that even you don't want to admit you have any of that make sense.
[00:20:30] Brooke: Yeah. What people see is like. I don't know. Is it like a volcano going off or like, it's like, it's like the end isn't it? If you, if you've, you've had all these thoughts and these sleepless nights and then it's that.
I think what I want to say was like that explosion at the end.
[00:20:49] Emma: There's an element of breaking and I think you have to break to go back together if that makes sense
[00:21:33] Brooke: If you bottled it up all that constantly though, you wouldn't it wouldn't do you any good, would it?
[00:21:37] Emma: No, no And I think I mean you might Know this a little bit better because you you know been through it firsthand, but I think you build walls to protect yourself initially from exactly what's happened. And then over time, those walls just fall down. And then, like you say, it's like a volcano. Eventually it all comes rushing out and then it comes out and then people don't know what to do with that.
Um, but yeah, you're, you're right. It's kind of an eruption, isn't it? Of feelings, emotions.
[00:22:10] Ashwini: I guess, you know, you're at a time when you need. support. It's a very vulnerable time. You're looking for support. You're wanting to know you're not alone. But at the same time, you kind of need the right support as well.
Not just the negatives. You need to know, and you know, for someone like you, who's very pragmatic, very practical, well, okay, what does this mean? What? Can I do, how can we move this forward? So, you know, having the right support from charities, from groups, which are set up for that. And I should say as well, we will be putting links on the show notes for some of the charities that you've mentioned, as well as of course, CBIT, but you know, I think having the right support sometimes can make the world of difference and you can still meet people, you know, share experience.
Have an understanding of other people's stories, so you know you're not alone. But it doesn't have to be the doom and gloom side of it.
[00:23:05] Emma: so I decided to start a bit of a blog. , and then I thought I'll start a Facebook page because it was one of those things of no one knows what hydrocephalus is. No one knows what acquired brain injury looks like. And I want to share this with them. I want to share the reality. And I didn't think anyone would read it, I'll be honest. I thought, you know, it would be quite cathartic for me to just let it all out, and my friend promised me she'd read it, and my husband, so I thought, two readers, that'd be fine, we can do that. And somehow it just naturally evolved, and it found its audience.
And then I met a lovely lady called Caroline, whose son Harry also has hydrocephalus and a shunt. And she was starting up a charity, Harry's Hydrocephalus Awareness Trust, which rather cutely turns into Harry's HAT. Their symbol is a bobble hat, obviously synonymous with the head growth thing. And she said to me, you know, I've been reading your blog and we're going to do a book.
Because as I explained, we went home with an eight page leaflet that didn't really tell us anything about the reality of having a child with hydrocephalus. And she said, would you like to be part of it? And I said, yeah. I absolutely would. Yes, thank you. So, it's a combination of parental stories, hints, tips and tricks, neurosurgeon, feedback, a glossary of all those words and explanations that you don't understand as well because they're going to throw those at you.
And it's called Hydrocephalus, What I Wish I'd Known. And it's a lovely book and it looks like a friendly book and it's got little cartoon pictures in it.
But I was very proud of that because it meant that the parents that come next don't have to have an eight page leaflet.
[00:26:13] Ashwini: Yes.
[00:26:22] Ashwini: Yeah, I just wanted to move on to some examples of how awareness in wider society, just acceptance, understanding can make a difference.
And for our listeners, just so you’re aware, these sorts of things came out in a conversation we'd had, I think, about a month or so ago, where, you know, you were talking about experiences when going to the theatre or when you went to Warwick Castle. So if you could just perhaps elaborate on some of those.
[00:26:48] Emma: Yeah, I think at first, I was always a little bit, I couldn't say it out loud, if that makes sense. If I asked someone something, I used to cry. So, I remember going to a wild bird park, and my little boy loves owls. and I remember hunting down this woman on the other side of the bird park to say, he can't queue, he's in a pram, he loves owls, what can we do?
And as soon as I said, my little boy's got an acquired brain injury, he's mainly non-verbal, but he can say owl, and I could feel the tears, and I'm trying to hold it together, and she was lovely, and she ran across this wildlife park, and she flew the owls to his pram. And we've got some lovely pictures of the owl sort of sitting on the bar of his pram.
And over time, I've gained confidence in thinking actually... because it all goes back to that thing of, he looks okay. You know, when you're using things like, he has a ride access pass in theme parks, because he can't queue. He doesn't understand queuing. And to be honest, he gets carried a lot as well. He's not the most stable on his legs most of the time.
But people look at him and think that man needs to put that child down. He's quite large or they think, why can't he queue when he's waiting at the exit? And over time I've learned to think, do you know what? It's not your business. He needs this and it's not your business. So, we're going to do what we need to do to make this work for him. So, I've learned to be quite proactive. I've learned to be a planner. So, wherever we go, I make phone calls, I send emails, I say, what can you do to help us?
So an example of that was, he loves Frozen. So, we were in London the other year, and we thought, you know what, we're not going to be in London with him that often. Let's go and take him to see Frozen the musical. But I rang up beforehand and said, I've got a little boy with an acquired brain injury and autism, and I need to get him into your theatre calmly, otherwise his whole day is going to be ruined if he gets dysregulated, he just won't be able to come down from that.
And they were lovely. They were, they said, we've got accessibility hosts. We'll put you on a list with the London theatres. If you come to the side door, see the guy in the red coat and we'll sort it out. And he had his own designated accessibility host during his time in the theatre. She took us up in a lift out of the main thoroughfare. So he didn't have to do all of the stairs and things. She showed him to his seat. She got the little booster seat. She came back in the interval to check he was okay, to take him somewhere quiet so he could just decompress for a little while. And the thing that she said as well that I thought was really thoughtful, she said Disney have recorded the entire show on an iPad, basically.
Um, And if he can't cope, we have a quiet room, and he can watch the end of the show on the iPad, so he doesn't have to miss it. And I thought, that's pretty good
[00:31:55] Brooke: How have you found the lanyards? Are they any good?
[00:31:59] Emma: Um, it was. And then COVID hit. So we've got to a point where Charlie used to use it pre COVID, and we were getting to a point of education where people were starting to understand the relevance of it.
And then the main prevalence of the sunflower lanyard during COVID was masks. And at that point, the message that sat behind it seemed to be lost. And we have had situations where, you know, we've taken him in somewhere with his lanyard, and people have just not recognised what it was for.
The Child Brain Injury Trust have these cards and we have them in our wallet and they're the best thing I've ever seen. They're so clever. It says, my child has an acquired brain injury and can struggle in unfamiliar and busy environments. And then underneath it just says, thank you for your patience.
And I think, you know, with the blog, one of the things that we're very clear on with people is saying, we know every single day that there's going to be a bad bit, because at some point in every day, he will struggle to either regulate or understand or deal with, that busyness, that sensory overload.
Um, and in that moment, he'll almost certainly go into a fight or flight response, and it's going to be quite epic. So, the number of floors I've sat on, and, you know, my husband's been lying on the floor of butlins sometimes, and, and I honestly don't care who's looking anymore. Years ago I would have done because people do look, um, but now I just think it's what my child needs so I will do that and I'm not going to make his life smaller because of other people's opinions.
No. Other people can just accept that he's having a tough time and to be honest I don't have to explain him. I shouldn't have to explain him.
I think the overriding message that parents have really embraced on his page is you can still have a good life if you just find the ways to support what you need to do
Like you say, Warwick Castle, we didn't know until... because Charlie does jigsaws to calm himself down and we'd asked because it was raining, if we could do it in the corner of this great hall, you know, in amongst the armour. Can we just sit in that corner? And the woman was really lovely and she said, do you know what, we've got a sensory space. Would you like us to take you there? And it's tucked in the bottom of a tower in the castle, and they just let you in, lock the door, and say ‘When you're ready, just leave’, basically. And it's got cushions and sensory toys. It's got a sofa for mum and dad to just sit and chill if they need to. It's got a changing bed because at Charlie's age, not everywhere has changing spaces and that's something that you need to consider because he's entitled to his dignity.
He's six. He's not, you know, there isn't an age limit on when you deserve to be treated with dignity. And, you know, trying to get a six year old changed on a baby change isn't ideal, but Merlin parks, for example, all have changing spaces that you access with a radar key.
I suppose the bonus of having a blog, if you tag people in it, some people do respond.
And we've had some really positive... Eureka, the children's museum, for example, saw something that I put on about a comment about his hair. Um, and they very proactively said, Can we talk to you? We're going to do some staff training and can we talk to you about the things that you think are important and the things that we can take on board? And every time that I've been back, you know, there's that evolution in what they do and how they approach it that takes into account that brain injury side of things. That difference, you know, the, I call it the no sudden movement thing because for Charlie he needs things explaining and a routine.
So they now do things in the same order and the way that they gesture to put a stamp on his hand. So, you know, there's definite bonuses to publicly analysing what you do and how it works because some places want to grow and change and adapt and I think they are getting better, but I think parents need that confidence to ask the question.
And I think my proudest thing was a mum that I met through the page and through Harry's HAT. I'd said to my husband, I was like, Oh, you know, they always take their little boy out. They're just like us. And she said to me once, she went, Oh, you know, we do that because of you. Because you gave us the confidence to know that it's okay to take a little one that's different out.
So yeah, I think the overriding message for me is just have that confidence to ask the question, because if you, I used to think it was cheeky, but it's not, because I don't expect the world to bend to Charlie, and Charlie shouldn't expect that either, but he should expect a level playing field. And if there's things that people can do to help him access the world, then it's well worth asking the question, because they may not have even thought about it before and it might be something they can do quite easily. Um, you know, that, that sensory space in the Warwick Castle, it's very simple, but it saved our day that day. And we wouldn't have known about it had we not had that conversation. So I think I'm much more confident now at saying, do you know what, we do need help.
And a lot of places now are a lot more proactive in saying, we have a sensory space if you need it because there is a lot more training that goes on with seeing maybe an overwhelmed child and recognising those signs and offering that help. It's a work in progress, um, and I'm happy to kind of prod it in the right direction.
[00:42:51] Ashwini: The final point I wanted to touch on was just in relation to the importance of your own support network. So we've talked about support from organisations, charities, you know, that sort of almost peer support in a way. But, you know, thinking more closer to home in terms of friends, family, and, you know, asking for help, accepting help, and also how dynamics can change.
Could you just sort of talk to us a little bit about that?
[00:43:15] Emma: Yeah, I suppose for us we, we were in kind of a position where we don't live close to family, so it is kind of me and my husband and Charlie, and I'm very proud of us, we are kind of like the three musketeers, but it is hard also because we haven't had an overnight away from Charlie since the day he was born.
So, if you add into that the kind of parenting plus that comes with acquired brain injury, it's tiring. We don't have that opportunity to almost recharge and do the things. I think over the last six years, we maybe have had a handful of opportunities where we've been able to go out, just me and my husband, for a couple of hours.
I have a few close friends that I'm able to be absolutely honest with.
That, you know, I feel like I can say honestly how I feel, but a lot of the time, like say the friends that you made in baby group and things you, over time you try and maintain those friendships and I'll be honest, you know, you do gravitate apart. Because your common ground is that developing child, and when your child isn't developing like their child, that common ground gets further and further apart.
And part of it may be my fault as well, because it's hard to see sometimes. When you actually put them in a room together, it is absolutely glaringly obvious where all those delays and differences lie, and you almost for a second can glimpse a different reality and it's painful because then you think what he should have been, what he could have been, what it would have been like.
So, you know, they're not on the same wavelength anymore, so the play dates don't really work. So you don't have that network of play dates and you can't go to a play gym, for example, and sit and drink coffee while your child goes up the play gym. My husband, bless him, has been up and down more play gyms than I care to remember, um, because he can't go on his own. He has to be supervised at all times.
You know, my closer friends. We've probably got quite dark sense of humour anyway, so when I do, you know, a dark sense of humour joke moment, they don't take it in a bad way, but other people might, if that makes sense.
You know, if I call Charlie a tiny maniac that's just headbutted me with a bowling ball, they get that, to me, that's my way of coping with it. Whereas other people might go, oh, you can't say that about him. I'm like, that's a weapon. Do you know what I mean? It's huge. Um, so yeah, I think everything in that social sense will change and does change.
And I think until I sort that network out by creating that page, it's very difficult to explain the nuts and bolts of what it's like.
Um, so yeah, I think it will always change your social networks because as Brooke said, it's an uncomfortable topic. And you will always find that quite a lot of the people surrounding you don't want to hear it, can't hear it, and I think it is that thing of, it could happen to anyone. So to sit there and acknowledge that is uncomfortable because you almost have that moment in your head where you go, what if?
[00:51:27] Ashwini: And I guess from your perspective, it's also allowing yourself that grief period to adjust to that. That, you know, that acceptance that things will change, dynamics will change. And this is your new normal, as I think we've discussed in many other episodes, this new sort of way of living and adjusting.
And it's still a worthwhile way of living, it's just different.
[00:51:47] Emma: And I think I wrote once, I think it's on the Charlie's story on the Child Brain Injury Trust, I think one of the lines I wrote was, I lost something that day, the day that I walked into the pediatrician's office, I lost something and it's something I'll never get back.
I just didn't know it that day. And it is, it's a whole new reality, but it's not a quick adaptation to that. You've got to go through stages, you've got to go through phases and seasons of it. And eventually, It's like I say to people now, I can, I'm very proud to do the job I do and I'm very, very honoured that Child Brain Injury Trust let me do that job and stand in front of those people.
But I can do it now because I've made my peace.
[00:52:40] Ashwini: Yeah, you would not have been able to do this six years ago.
[00:52:42] Emma: The only reason I can stand on that stage and give. A real insight into childhood acquired brain injury and its impact is because I've made my peace with it. But the only reason I've made my peace with it is because I was supported to do so.
[00:58:20] Ashwini: Well, thank you, Emma.
That's, um, that's been really, really quite wonderful. And again, you know, just that insight into your world, into the support that's out there and some really important messages, I think, for our listeners as well, in terms of seeking support, not being afraid to ask for support. But I think, you know, the point that you made as well about not having to always justify the need for that support is really important.
As I said before, we will be putting links on the show notes to the various charities that have been mentioned in today's episode and contact details as well for the bit, links to your blog, etc. So once again, thank you very, very much for your time today. It's been really a privilege to listen to you and your story.
