6.Daryl and Oakley's story. How to heal a very complex diagnosis

I got teary eyed again listening to this emotional recount of Oakley's early days, and also so uplifted at hearing his amazing story of how he is slowly recovering against all the odds handed to him at 2 days old. Her energy is infectious and I am deeply humbled listening to their life story.

Daryl is a powerhouse of a mother, forging his path with him. You can find her on Instagram at @acornupdates

Oakley was born with an imperfect brain, and was on a NG tube, intubated and was having seizures. He isn't fully mobile, is registered blind and non-verbal.

This is their wonderful story worth listening to. You don't have to have everything in common in order to gain so much from their experience.

Timestamps:

0.52 Birth story

1.59 Painful diagnosis at 2 days old

3.47 Taken to NICU ( ICN)

4.25 What the MRI showed about Oakley's brain

5.19 Seizures started

7.05 NG tube placed

8.32 What he can do today: Tube free, not blind anymore

10.00 Attitude is key

14.25 Hard days and mum guilt. What works, what doesn't.

18.00 They pick everything up

21.00 How he uses a whiteboard

27.00 From NG tube to eating normally

31.00 Typical day

34.00 Improved sight

38.00 Oakfest - see @teamoakleyeventsThe Cricketer's Pub, Hitchin, Herts, 12th July 2025 11-6 Please go and support and meet Daryl and Oakley if you're living in that area.

Transcript

SPEAKER_03: 0:00

Hello and thank you for deciding to listen to this conversation today that I am going to have with a mother called Daryl and she has a son called Oakley and this is going to be a really interesting story. So hi Daryl. Hello. Can you tell everybody about your Oakley and then let's start with the birth story because I'd say that Oakley's case isn't very typical to the majority of cases I see. So let's start at the beginning. Tell us about the start, the birth and pregnancy. Okay

SPEAKER_02: 0:53

so Oakley is three next month. And already it feels like a lifetime ago. So when I was pregnant, I decided to read up quite a lot and take responsibility for my health, my pregnancy, my birth, and be very intentional about how I wanted things to be. I decided to go for a home birth and we had a inflatable pool in the living room and I labored on my own for most of it with my partner there in and out of the kitchen, filling the pool up with water. and I'd also appointed the help of a doula. So it was pretty straightforward, no problems. Oakley was very quick delivery and yeah, he arrived into our lives and that was it. Now, when he was born, I didn't recognize that there was anything wrong. I just thought that's my baby. But the midwife that was there and the doula recognised that Oakley had a very small head. And that's kind of where our story begins. He was breathing fine. There didn't seem to be any other concerns. So we were transferred to hospital and we went to see some doctors that wanted to just check Oakley over. Anyway, we ended up going back to see a different consultant when he was two days old. And that's when just our world fell apart completely. It's actually a horrible thing to think about now, to be honest. But when, yes, he was two days old, they checked him over and they said everything is absolutely fine with him apart from his head. And they went on to tell us that his head size was significantly small. And that meant there was a problem with his brain. And when I asked the doctor, OK, like, what's the best case scenario here then? He literally said, I'm not willing to discuss that. Like, I'm not willing to go into that. So then I bravely said to him, well, what's the worst case scenario? And he said, your son could be fully dependent on you for all of his care for the rest of his life. and then broke that down to maybe unable to see, move, think, speak, eat, like tube fed, deaf, everything. So we left the hospital with that information and we're basically told there was nothing we could do about it and we have to just wait and see. The advice was wait and see, take it moment by moment. And at that moment in time, Oakley seemed fine. He was able to hold my finger. He was breastfeeding. And his reflexes were there. But the man told us basically to watch out because at one point, and I think this is actually not very accurate now, knowing what I know about the brain, but he kind of simplified it for us and just said that baby are born with newborn reflexes. And once those reflexes switch off and their hemispheres of the brain take over, like intentional movements, we could lose what we were seeing now. So we took Oakley home and I phoned my doula, absolutely devastated. And at that point, Oakley had stopped feeding. He was not feeding well and I was syringing colostrum and dropping it in his mouth. And she rushed over to me with a breast pump and we're like, come on, let's just do this. We can try a bottle. We can get some like fluid in him. So she did an hour and a half round trip to come find me. And when she arrived, she said, Darryl, he's yellow. And he went severely jaundiced. So we had to pack our bags and rush to like A&E. where then Oakley was ultimately admitted into NICU where he stayed for actually just a week and I think we were let off quite a lot by in a week but in that week we had an MRI we had various other things and bearing in mind that I was the mum that was doing everything I could to have a natural intentional you know like homeschooling feet on the grass kind of mum And we were now thrust into a very, very medicalised environment. And unfortunately, it became bad news after bad news. And the MRI showed that not only was Oakley's brain very, very small, but it was also very smooth. And you may or may not know, but your intellect and your brain, like your capacity for I don't know how you would describe it. It doesn't just come from having a big brain. It comes from having lots of surface area. So you need the gyri or the folds in order to be able to store the information that the brain requires. And that's particularly the case in the upper parts of the brain. And the upper parts of the brain are responsible for more intricate abilities. There are higher levels of function. And Oakley's, that part of his brain hadn't developed. So it was completely smooth. so again the advice was just to wait we got him out it was crazy it was an intense time but we were in hospital for the week with him we actually couldn't stay with him either so we had to leave in the hospital and go home to sleep and go back and then just a few months later we're taking him home we carried on as usual a few months later his seizures began and I didn't even know to expect seizures and the first seizure he had was about 15 minutes long in a pub garden with my friends and I was like what's happening what's he doing I don't understand what's going on we phoned an ambulance we rushed to hospital and we weren't really given very good care we were told it might be a one-off and to go home anyway Oakley seizures built and built and I knew I wanted to do something else but I didn't know what because in the moment when you've got a child who's desperately unwell with a significant brain condition it's very rare how do you have the time to try and figure that out and I was I mean I was googling and searching and calling people from the hospital bed with Oakley on my lap And in the end, we went down the medical route initially because we just had no other option. Unfortunately, a couple months later, Oakley was intubated. So he was put on a ventilator. We were led to believe that he might not pull through. And we had to wait for specialist transport to take us to a paediatric intensive care unit because we didn't want to have one in our local hospital. And I literally sat by his bedside with my head resting on his head because I couldn't touch him for seven hours waiting for transport to come while he was effectively in a coma. And a very unhelpful technician came by and told us that Oakley looks like he's still having seizures even in the coma. So I asked what that meant and what was he suggesting by that? And he said, oh, I can't say. And then we just left for seven hours and that was it. So, I mean, that was in the early part of our story. We then had seizure meds and done that kind of thing. And I was looking for therapy. We've done intensive therapies. but ultimately Oakley ended up being intubated again and we had many many trips to and from hospital in an ambulance and after his first intubation he had an NG tube placed so despite my effort I tried so hard he was breastfed about three four months and then after the first intubation he lost his ability to swallow so he had to have an NG tube placed. So I'm going to stop there because I think otherwise I could just do the whole three years.

SPEAKER_03: 7:28

So I'm sorry that you've both gone through that. And I think there are some... I know that there are actually quite a few mums that will be listening to this who have gone through some similar things in that story. Tell us... So people can imagine or visualize what Oakley is now. Like, what can he do? I picture him because I watch you on Instagram. I watch your story on Instagram. What's your Instagram name while we're talking about it? Yeah, sure. It's Acorn Updates. So you can see his Instagram. progress on there and i've learned quite a few things from from watching him on there so can you just explain to somebody that um because i can see him in my mind what oakley is capable of or not capable of at this point in his life

SPEAKER_02: 8:37

okay so as

SPEAKER_03: 8:38

of

SPEAKER_02: 8:38

right now he has been tube free for two weeks and And one day and a half. He had his tube for 918 days. So it's a really big accomplishment. So I'm really proud of that. I'm really proud of him. He also is now able to, well, I'm talking more about things he's able to do. So let's get the bigger general things out of the way. He's not mobile. He's mostly nonverbal. We're getting some beginnings of sounds that we believe are words. Like I'm hearing a yes. and I'm hearing those things emerging, but otherwise you would say he is nonverbal. His vision is impaired. He has been registered as blind by the NHS service for ophthalmology. However, we've been doing lots of private therapy and we have significantly improved his vision. He is definitely not blind anymore. Although he still needs work. He is not mobile. He can't sit up on his own. um but he has such a character and such spirit and fight that boy like does not give up we've taken him through so many different therapies and things and even when he's shouting about it doesn't want to do it he still does it anyway um he's just full of full of life and he's he smiles he laughs he can open his hands now um he used to have his hands in real tight fists with thumbs tucked inside his fingers really curled up And his arms would be brought against his body, almost like a little T-Rex. They're just all tucked in tight. And that used to be really hard to dress him. But that's not the case anymore. He can abduct his thumbs and his fingers. I think, and also to the parents listening, if you're in a situation like mine, you live under a microscope. And when you talk about the little wins that your child has, they're really significant for you. But the average person, if you're talking about thumb abduction, you sound like a nutter. So... yeah I can't think of anything else right now but he's he's making small progress all the time

SPEAKER_03: 10:42

I just want to pick up on what you said when I asked you to describe and you went oh no I'm gonna oh I'm starting with the positives that that is such a key thing and I think I keep saying this in quite a few of the interviews that the mother sap i'm working with with their children have made the most progress or made gains against the odds like yours um it's all been about the mother's attitude and then for instance when i see when i see mothers for their follow-ups i will always say well let's start with the changes this is an absolute given the mothers that like to start with oh yeah well he said a few more words and he's doing this and he's doing that and all the good those children just seem to do much better and the mothers that start with well he's still not doing this and this and this just shopping us but of course i know is there which is why they've come to the session yes i need to address things that i still need addressing but it's all about for me it's all about the mother's attitude and why i've chosen um to speak to you today and really want you to share your stories. This is not just about Oakley, this is about you and your story and Daryl, your intense energy to drive this forward against the odds that were told to you when he was born is something so powerful, is so amazing. It's really quite incredible what you're doing, what you're sharing and how you're sharing your story on Instagram, all the games, all the things that could encourage Other mothers with similar stories. You don't have to have a child exactly like Oakley to gain from looking at your Instagram. A child can have one or two issues that are the same. Tell me about what is that? What is it inside of you? What is that that drives you and gives you this incredible force to help Oakley?

SPEAKER_02: 13:01

That's a really good question. I thank you for your kind words. That's really nice. I've not really given it much thought about really what drives me because I think on a deeper level, there's probably something else. But when I was pregnant, I took it so seriously that this little baby that was coming to me was mine and he was my responsibility, but not in a way that I control him, but in a way that I'm responsible to guide him. And when they gave us that diagnosis, I just felt even more responsibility. How can I do this the best that I possibly can do this? And don't get me wrong, I have bad days and I have mum guilt and I feel like sometimes I'm not doing it right or I'm not doing enough. But ultimately, I am proud of myself because we've worked really hard together and I do see it as a team effort. When I talk about things that we do, I say we do it because it is really Oakley and me as a team. And... you know like even when we was in NICU I just and I had to leave him in the hospital I just felt such a strong connection to him and for people that feel are spiritual and that way inclined I feel like our souls were meant to be together and that might seem a bit much for some but for me I really thought that's the case so I take that position with um how would you describe it um it's really important to me and um therefore I'll do anything that I can

SPEAKER_03: 14:24

How do you get yourself out of those bad days? Because I know these are the type of days that I know that a lot of the mothers listening have. And that not doing it enough, not doing it right, that mum guilt is very common and it's not spoken about enough. It's really hard to push through that. Tell me about, yeah, what's your coping mechanisms for that? Or do you have any... Tips to share that, you know, what works for you? Because I know this is, when we're talking about these emotions, like my words don't do them justice. They're so intense and so deep, but I know that there's so many mothers struggling with this. What do you do on a day-to-day basis when things are really hard?

SPEAKER_02: 15:12

I think it's really important for me to acknowledge both the helpful and unhelpful things. Because I listen to podcasts like this too, myself and other people's stories. And it's easy to think that, oh, well, they've got it. That's right for them because they're doing a good job and I'm not as good as them. It's really important for me to cover both. Okay, so I am overweight and I'm comfy. Would not recommend that. I'm working on that. But if we talk about things that are helpful, like not beating yourself up and not stuffing food in your face, going outside is very helpful. Like you just cannot even over- acknowledge how much going outside and being in nature is helpful. That's really good. It's like a reset. And I don't do it enough. But when I remember, oh, I know why I'm feeling really miserable. I haven't left the house for four days. Maybe we should go outside.

SPEAKER_01: 15:58

But

SPEAKER_02: 15:59

also music. Music has been such a therapy for me because I can just really feel the lyrics. I feel the music. And over the last three years, songs have sort of appeared within my playlist. And then they become, they hold a lot of meaning in that particular time. And I'll just play them over and over again. And I ever get the opportunity to go out driving because I've got to run errands or something on my own. I'll have my music playing so loud in the car and I'll just sing along and I'll cry to my music. And I find like it's a really good emotional outlet. I mean, I even use it to help me pull through because it's not even just about managing your own mindset and your own emotions. It's about how do you still show up? How do you still do what you have to do when you feel like absolute rubbish and you don't want to do it.

SPEAKER_01: 16:46

And

SPEAKER_02: 16:47

there's been times in this feeding journey with Oakley has really pushed me to my limit. It's exhausting. And I don't want the tube. I don't want that outcome for him. I want him to be able to eat with his mouth. Like, what's for the children

SPEAKER_01: 16:59

and

SPEAKER_02: 17:00

I had a few songs that I would play on repeat Paul Oakley would be sat at the table together and I'm spoon feeding him and he's thrashing around and he's uncoordinated and his hands are by his mouth and he's smushing it everywhere and he's refusing he's biting my spoon he won't give it back I could go on and I got these different songs on there And one of them is Something's Gonna Go Our Way. And it's a really upbeat song. And I'd be sitting there sometimes with tears in my eyes, like trying to hide that from Oakley. And just singing to him, Something's Gonna Go Our Way. And there's another one as well. I can't remember who it was now. If I go back, there's been like a, it's like a timeline in my music now. It's like where we were at that point. And I would just sing them to him. And when you said earlier on about the mothers that have that more positive attitude sort of like outlook and how their children do better like it really doesn't surprise me because and I've said this to a few people if your own mother doesn't believe in you what chance have you got and

SPEAKER_03: 17:52

that's what I remind myself exactly that oh exactly that oh that's so powerful I have said that sometimes to some of my mums it's exactly that if they don't believe in you, yeah, that's really powerful because that is all they've got. That

SPEAKER_02: 18:19

is all they've got. If we set that ceiling and they are aware of it or they hear it, even if you don't tell them that, if you act like that, they're going to pick that up. Children are smart, brain injured or not, they are smart and they are smarter than we can even possibly imagine. I truly believe that about all children. If they recognize or notice or pick up that you think there's a ceiling for them, they're never going to go above it. It's very, very unlike they're going to go above it because they'll just take that as the, you know, the gospel truth. That will be it. So it's really important for me that I try my best and I slip up, but I try my best to make sure that Oakley knows that he can do anything and not in a way that's forceful or an expectation on him, but just anything is possible.

SPEAKER_03: 19:06

If anyone takes away anything from any of these chats that I'm doing, it's that, it's this, it's exactly what you're saying about these chats about me trying to help promote that there's all the other stuff apart from homeopathy and all the other things that they do. It's the stuff that can't be bought and it's It's telling your child every day, oh, you're doing it. Or, you know, if you're potty training and wow, you know, celebrating the potty training that they've peed on the potty, like whatever that thing is that you're aiming for, just to keep focusing on that. So I've heard some really sad ways that some mothers talk in front of their children, of which there is no, there's absolutely no judgment from me because I am taking the case, but also I don't think that they're aware that their child is picking it all up because they think their child can't understand what they're saying. But having now been working 10 years with some, with children, I haven't had any patients that long, but I think I've had longest patients are probably about six, seven years. And having seen from the beginning where you think not a lot there's not a lot of potential say well that's what the doctor has shown that's what the parents come with there's not a lot of potential here too these children are now talking and communicating and going to partly mainstream schools or that shows that that intelligence was always there yeah That they may not be able to talk, but they can hear a lot, or they pick up things, or when parents are going through a divorce, they're hearing it all. But they can't say, I'm sad, I'm angry. They may not show anything on the face or any expression. Yeah. Oh, yeah, I'm so glad that you've said all of that stuff. I really hope that some others take that away. going back to your the feeding issue that he was on a tube and you were so determined for your child to eat by themselves and I remember one of these videos when I saw that video I thought oh my god one of the best things I've seen is that you had I will say what it is and you can explain what happened because I will forget it and not explain it properly but you had a whiteboard And now Oakley doesn't have, he doesn't have perfect ability to point to things, does he? And his arm movements aren't perfect. But, oh my goodness, you had this whiteboard and he was pointing to, I think it was like, I don't know what the options were, but one of them was homeopathy for teething, a teething pill. I thought, look at this kid go. But before, before that can happen it's like look at this mother like what she is doing and her expectations in the first place like if you didn't expect him yeah to be able to maybe point to something on a whiteboard you won't be doing it so can you tell the story of that because that is one of my favorite things I've ever seen you do

SPEAKER_02: 22:36

yeah sure

SPEAKER_03: 22:37

so

SPEAKER_02: 22:37

I last year Oh, I'm getting confused. I'm not sure. One year, I discovered a company called Doman International. They are a global organization. They've been treating brain injured children for over 80 years. And somehow they're still a secret to most people, which I find shocking. Anyway, I found out about them. I read their books. I cried. I booked a phone call, cried some more. Then I did their online course and then we flew out to meet them at their European headquarters in Italy. And we've been going back every six months. We've just had our third visit. So they taught me this thing, the whiteboard. And it's part of their communication model for children that are nonverbal. And as you said, Rita, yes, Oakley doesn't have perfect movement of his limbs. In fact, he can't reach out and grab things. So he's quite limited there. But despite that, they showed me that just with a simple piece of paper or I use a whiteboard because it's easier, we can write options on there. So you imagine you've got like a rectangular whiteboard and it's landscape. You draw a line down the centre, like a vertical line, and then you can put an option to the left and to the right. So we started doing yes and no. And then I would hold it in front of Oakley and I would hold his arm and support it for him. And I would show him with his hand to pull his hand to the left meant yes, and to the right meant no, and then bring his hand back in the middle. And I'd have it elevated so gravity is going to work with him. So when he chooses, it's easy for him to make a choice. We'd ask him questions and it took a little while to get practice, but he did start making choices.

SPEAKER_01: 24:06

Wow.

SPEAKER_02: 24:07

And then we started increasing the complexity of the board where we created like an X cross. We had four quadrants and we started doing more sophisticated choices and we'd have little conversations on it. And one of the things I asked him before, he was just shouting loads. And I was like, right, let's get your board out. I'm going to ask some questions. And sometimes just saying to him, I'm going to ask some questions makes him stop shouting because he knows he's going to now get to say what he wants. So, well, from my options, which is not the best, but it's better than nothing. So I gave him some options and I asked him what the problem was and we worked out that he was in pain. And I asked him what was painful and we went through that and he said teeth. Okay, what do you want for your teeth then? So then we gave him more options. And what I will add as well, if you're gonna try this, in one of the quadrants, I would leave it say something else because then he can act as a library, okay? So you might give him something to bite, I'll give him homeopathy remedy or something cold, for example, or something else. And he will just say something else, something else. And then you're sitting there thinking, oh my goodness, what else can I possibly think of that you might want? It is a bit of a problem for the parent because I think sometimes he just tests me on purpose. But he chose the remedy and I gave him the remedy and he's sharp. Like, it's so clever. But don't expect it to work every time because sometimes One of the things I think is really overlooked for families like ours is when your child is brain injured, that becomes their whole identity. But let's not forget that they are toddlers. And there is, it's like I said earlier on about that understanding. They're really smart. They might not have to show that they're smart, but they're so smart. And you're going to have a combination of brain injury symptoms mixed in with chronologically appropriate behaviour. Yeah. you know quite frankly sometimes he doesn't want to answer my questions he probably finds me boring so we've been having more conversations recently about just things that have interest to him and trying to find out what those are

SPEAKER_01: 26:04

and

SPEAKER_02: 26:05

it takes the pressure off so if you're not sure and you feel a bit silly doing it it takes the pressure off like I asked him this morning we went on holidays recently didn't we we went to here we went here which was your favorite holiday And he chose. I was like, oh, that's cool. You know, what did you like the best about Holiday? We did this and we did this. What did you like best? Like, there's no pressure then. It doesn't really matter what he chooses. You don't feel like you have to get the right answer. You can get to know your child. And I think the more that you then get to know them, find out about them, even if it's not always accurate, it doesn't really matter. Because he has to learn the cause and effect, right? And by repetition, particularly with things that are going to have an outcome to them, then he's going to quite quickly figure out if he doesn't want a drink and he keeps saying, yes, he's going to get a drink. So maybe he should choose no, no. But the more you get to know your child, I think the more willing they will be to even answer your questions. I

SPEAKER_03: 27:00

just love, I love these stories so much. They're so powerful and yet so simple. Like you haven't had to go and fly to Mexico and spend loads of money on that. It is a whiteboard and a pen. And it's just like, oh, I haven't thought of that before. You know, it's like, it's just so simple. But, oh, gosh, I love that story so much. Now, there's a few people I know that work with me have children, have some babies, some infants have NG tubes. How did you get your child to eat normal food? Because... I work with a few children that with NG tubes but once they're given the NG tube they're all like okay that's it then you know there's no there's not much attempt to get them to eat because I think perhaps it's well I've got so many problems and that problem is taken care of it's just something I don't have to think about tell me about how you managed to do this because that wasn't easy but how did you do it? okay so

SPEAKER_02: 28:11

excuse me it was a multi-layered approach i think everything in a case like oakley's requires a multi-layered approach so i discovered a therapy called vital stim and it's a type of nmes which is neuromuscular electrical stimulation that's what it is if you want to look that up um simply put It's a bit like a TENS machine. There's like a machine with wires that has electrodes on the end with stickers. And you stick these electrodes to the face and the neck to stimulate the swallow muscles. Now, when I first found out about it, there was only one pediatric practitioner in the whole of the UK. So I used to drive three hours each way for an hour therapy session to see her. There are now more in the UK. But effectively what it does is it stimulates a swallow reflex and it activates those muscles and it brings awareness to those areas. That's how we began. Before that, we were trying a little bit ourselves, but I think that really, that really helps out a lot. That gets us on a really good trajectory. So we did some intensives of that and then we did a couple more. And then we learned about other things we could do too. So it's also worth considering. Your child possibly has limited sensation. So if you're going to be trying to give them food, think about temperature, think about even like spiciness, not spicy, but even like lemon or like tartness or bitter, you know, something to stimulate them where they recognize it. So when we were working on Oakley, water with Oakley, we used really cold water. So he was more aware of where it was in his mouth when it was traveling. But we've also used something called a Z-Vibe and it's a little vibrating stick. and it has different attachments that go in the end. And we would use that on the outside of Oakley's mouth, around his jaw, his lips, inside his cheeks, his gums, again, to wake up the sensation. So even in the last two weeks where he hasn't been having any, he hasn't had a tube, before each meal, we're still doing that as like a practice, like a wake up. Okay, food's coming soon, let's wake your mouth up, wake your cheeks up, your tongue. That's really helpful too. I think now I have a whole toolkit of things that I find are helpful for feeding. So that's more like really hands on tangible things. But then if we think about the background, we need to think about why the swallow has been impacted. You know, so obviously I'm talking to Rita. We work with a homeopath. I think detox and certain things. We all know what I'm talking about. That would also be a very good start. But also considering the brain. So the reason why Oakley's swallow was impacted is because of his brain structure. So we need to resolve that. So how can we heal his brain, help it grow? So we need to think about ways to target the brain, which will then the outcome will be improved swallow. So nutrition is really, really important, but also so is oxygenation. So you need to improve your child's breathing in order to be able to get more oxygen to their brain for its development and growth. We do a bunch of respiration programs with Dome International. They help us with that. And they also give us a really good nutrition program.

SPEAKER_03: 31:28

So that's been really helpful. It's so good just to hear these stories because they're just, how do people get hold of like positive stories about this kind of stuff? It's just great. Last thing then, tell us about a typical day. Tell us about... your typical day? Because most of the children on the spectrum that I see, most of them are either homeschooled, they're quite able, physically able, or they go to school in the day and then come home. Oakley's life is slightly different to that. Tell us about your typical day.

SPEAKER_02: 32:04

So we try and create a bit of a routine, but that doesn't always work. So instead of I have a checklist of things that I hope to get through each day. And I do mean a physical checklist on a clipboard with a pen. And when Oakley wakes up in the morning, we have a morning routine of things that we go through, some parts therapy, some parts general stuff, like lifting him out of his bed and getting dressed, et cetera. And then we break the day up into four meals. And again, we haven't got set times because Oakley can be unpredictable with seizures, although he's been a lot better lately. and also tiredness and things. So we feed him the first meal as soon as we can, and then we give him the next one whenever it's reasonable to do so. And then within those food breaks, I then have to work out where I can fit aspects of his programme. So some of his therapy we do at home is physical, and he would need to have not just eaten to do that. And other parts are more passive, like I show him pictures, we do a reading programme, we do visual stimulation, stuff like that, that can be done if he's eaten. So really, if I'm honest, My life just revolves around Oakley's care and what he needs each day. Often I wake up with him and often I'll end up going to sleep when he's asleep. So it is quite full on. And like you say, we have the additional challenges of the mobility. Oakley has a wheelchair. He has a lot of cumbersome stuff to cart around. So it is a bit trickier to get out of the house. I just have a lot of things and we do a lot of things, but then we also... There's other things that I feel like we should do as well, but there's only so much time in the day. But in terms of like, I guess the therapy that we do with him, we do physical stuff. We're working on hanging at the moment. So Oakley, we're brushing his hands with like a really rough course brush, which he loves. It makes him smile so much. And I'm often like singing to him and being silly with him while I do this stuff to make it more entertaining. We brush his hands. I say we, I brush his hands and then Oakley, I have a wooden pole, like a dowel, that I'm going to put an Instagram story on soon about this, actually. And I'm trying to teach him how he can hold on to the pole. And then I'll pull him to seated with that. And the goal is we're working towards brachiation or like monkey bars. That's one of our big things at the moment. Really good cross pattern movement. While hanging, brachiation is so brilliant for developing the brain, but also handwriting as well. And like controlled fine motor skills, really incredible. We're also teaching him reading. So bearing in mind that he's registered blind by the community, his vision has improved so much now that he's sight learning words.

SPEAKER_03: 34:51

Goodness me. Now, what do you think has been the key things involved in improving his sight?

SPEAKER_02: 34:59

I think this like undercurrent, right? It's the things you can't see, really important. And then you build on top of that. The foundation is not good. It's a bit strong statement, but maybe don't bother. You need to get the foundation strong. So the oxygenation of the brain, the diet, the sleep, the detox, that stuff's really important. But then from there on, a bit controversial, medication. Opie was on a lot of seizure medication

SPEAKER_00: 35:28

and

SPEAKER_02: 35:29

it impacts the brain, it suppresses the brain. And it also is quite commonly linked to inhibited vision.

SPEAKER_01: 35:37

So

SPEAKER_02: 35:39

that's also something to watch out for. Like if you have a child and they're on lots of medication and you're trying to make them better, I get it. I was there, but actually sometimes we need to consider maybe if the medication is actually making them worse. So from there, we learn about a light reflex activity that you can do, which is where you use like an incandescent torch and you shine a light in their eye for three seconds or so. And then you cover that eye up for three seconds and then you shine the light in the other eye. And what you're doing is working on that light reflex. So newborn babies aren't born with perfect vision. We know that. When you learn how their eyes develop, you realize that actually, A disabled child needs the same thing, but on a much higher level of intensity and much more frequency. So when you see little babies and they're playing peekaboo and silly games like that and putting their hands over their eyes, they are stimulating their light reflex in a very subtle way. But

SPEAKER_01: 36:40

for

SPEAKER_02: 36:40

a brain injured child, they don't get that same experience, that opportunity. Because like Oakley, he can't really do that. He wasn't able to move his arms until more recently. So we have to create that environment for him and that opportunity. So say, for example, a neurotypical child, let's say, for example, their pupils are stimulated a thousand times and their vision improves. Oakley might need a million times and that might have to be in the form of a passive intervention from me. so yeah we've done lots of that the light reflex training and then also checkerboard so create yourself like a really big black and white checkerboard preferably loads of them stick them everywhere your baby is like around them everywhere that high contrast visual input will be so good for them it will make them bother to try to see because there's something that they've got a better chance of fixing on if something's too visually complex it's easy just to block it out, just to switch your vision off. But if you have something there that's of interest, that's easier to access, there's going to be that entry point.

SPEAKER_01: 37:49

So

SPEAKER_02: 37:50

yeah, we've built up the checkerboard and over time we've added black and white symbols and then primary colour symbols and now complex images and now he's on photographs.

SPEAKER_03: 38:02

I've seen pictures of that on your Instagram. I learned a lot there. Wow. Okay, let's tell everybody about Oakfest.

SPEAKER_02: 38:11

Okay. Okay, so as I've alluded in this conversation, Oakley has a lot of private therapy, and that is not cheap. So we found ourselves in a very, very different situation than I expected from those, you know, naive pregnant days, where I thought my baby wouldn't be on social media. And, you know, we just live a private life. Instead, I'm actually throwing a whole fundraising day in his honour in order to fund his therapy. So we expect he's going to need for, you know, the, well, maybe next 10 years or more. I don't know. So Oakfest is a big family fun day fundraiser that we're holding near to where we live. It's in Hitchin in Hertfordshire. And I mean, my planning for this is just out of control. We've got pony rides, face painting. We've got pedal go karts. We're holding it at a lovely dog-friendly, family-friendly pub. We're having play zone and crafts and hair braiding, raffle, like live music, loads of things. It's going to be a really, really good day. And it's all about bringing the community together, having a really nice time, but ultimately to raise the money for Oakley. When is the historical? It's the 12th of July from 11 till 6. It's free entry. You can just come along on the day. It's being held at the Cricketers Pub. There's lots all online about it. We have a new social media channel called Team Oakley Events, and it's where we're going to put out all our different fundraisers that we do. It's a full-time job in itself, and I'm very fortunate to have really, really generous, kind friends supporting me in pulling this off. So yeah, if you check out Facebook, Instagram, and even we're on TikTok, we have acorn updates for oakley and team oakley events for our fundraising stuff

SPEAKER_03: 40:06

right sure it'll be a success and i hope if you're in that area you can come and meet daryl now that you've listened to her story so thank you so much thank you so much for sharing your words today and i hope they land somewhere really nice somewhere that you know some people will um take some of what you've said and run with it and um It's just so nice to meet you and so nice working with you and Oakley. It's quite a special story. So I wish you both more, more healing and more, more gains. Thank you. Thank you for inviting me on. It's been a real privilege.