Cerebral Palsy: Mike & Helens Story

In this episode, we sit down with Mike and Helen, devoted parents who share a remarkable journey as caregivers to their son, Delano, who has been living with cerebral palsy since birth.

Join us as Mike and Helen open up about the challenges they've faced, navigating the unknowns of Delano's condition, and the resilience that has defined their unpaid carer experience. Despite the hurdles, what shines through is their unwavering positivity and infectious humour.

Tune in to gain insight into their unique journey, be inspired by their resilience, and discover the beauty that can be found in the midst of life's challenges. Join us for an episode that will touch your heart and leave you with a newfound appreciation for the unpaid carers in our community.

Your Voice Matters! Share Your Thoughts and Help Shape the Future of our Podcast on Unpaid Carers' Journeys. Complete the Survey Today

For more information about unpaid carers please visit - https://caretrain.co.uk/unpaid-carers

Transcript

Lewis  0:00  
Hi everyone. Welcome to this episode of carers voices My name is Lewis, I'm joined by our co host cheryl today, and today we are joined with Mike and Helen. Thank you for having us today. Would you be able to maybe tell us a little bit about your caring journey and from what you started off like and where you are now?

Helen  0:19  
Wow. He's now what 13 is? September so it's quite a long journey.

Mike  0:26  
Yeah. Well, there was normal pregnancy. Yep, everything going fine. Nothing to say that anything was wrong. And then during the

Helen  0:39  
Yep, 10 centimetres dilated. He was sitting there eating rhubarb and custards

Mike  0:47  
 but yeah, then bang monitors gets dropped.

Helen  0:50  
Yeah. Oh, we had a poor trainee doctor in with us.

Mike  0:57  
I have not come into a birth. It's okay. If I sort of watch it and sort of take notes. Yeah, no problem. Come in. Bang. The monitors went down. The doctors were sitting going woah!!!!  it was quite quite funny.

Helen  1:11  
I think that was the best training you could ever have.

Mike  1:14  
Yeah, he had training.

Helen  1:16  
Yeah, so raced off. They managed to save Delano. Well, of course. He went straight up to Glasgow, and they put them on a cold mat.

Mike  1:25  
Which if they dropped their temperature down, it stops brain damage from continuing doesn't stop it from actually happening. But it stops it sort of getting any progressively worse. And

Helen  1:40  
I went to the wrong hospital because they took me in an ambulance up the next day. And they took me to the wrong hospital.

Mike  1:48  
I got their first but lost the car.  My brain wasn't  really with it. So I was just I parked the car lock it walked into the hospital and it's like wheres the car? Eh Dunno

Helen  1:58  
The problem was my maternity bag was in there. So I had to like survive off of not much.

Mike  2:04  
we found the car eventually it's not like I've left it there. Yeah, there we got it back.

Helen  2:10  
Yeah, it was a bit of a shock. A bit of a trauma. Yeah. Like, what do we do? Yeah, so it was up there for about a week wasn't we  before we came back down to Dumfries.  Oh the horrible Thursday. Yeah, that was that was the worst. So it did, Delano had they they said that it's best to take him off all the life support machines and bits and bobs. And they didn't know if he was gonna survive or not. So

Mike  2:38  
The weird thing is during the pregnancy, we'd already named him.

Helen  2:41  
Yeah. I used to go around singing  to  him all the time, say you knew his name.

Mike & Helen  2:45  
And they actually sort of did a brain scan. And it was literally just flatline. Until you said Delano. Peak. Yeah. Right up. So it was it was minuscule. But every time you said his name, it peaked. Yeah. And it was like, Oh, okay. Yeah, he's there. On that Thursday day. It was just. They turned all the machines off. And it was, it could be two minutes. Two hours. Two days. Yeah. We just didn't know. And it was not one of the

Helen  3:21  
Its a horrible sort of thing to sit with. So we just said to ourselves, if he survives an hour wasn't it

Mike  3:26  
Yeah, he survives an hour then we have to live as if he's gonna survive the rest. And that's it. So every little every little thing was a celebration. You know, first poo we had cake. First pee, we had cake. He made a guttural noise. We had cake. You know, it was a full on just every little thing was a celebration. And I must admit, I think that's how we've continued. Cuz the other side of that, which, when you're in hospital, you do see two sides of things. You see the people who aren't necessarily coping well. And I don't want to say we coped well, because trust me differently, everyone COVID We've got wicked sense of humour, which does help. But you see people going on a spiral downwards. And we thought we don't want that for the for the kids for the other two as well. It's just like, we've got to really sort of pull together.

Helen  4:30  
I think really, that's the way forward is positive thinking. You just got to try and forget. Forget all the worries and just live in the moment and it's really hard, but you

Mike  4:41  
get what you can whilst you can Yeah, and we sort of expected of literally a couple of days we are 13 years later so so it can happen

Helen  4:51  
 Yeah. He did it.  Well done Delano!

Mike  4:57  
Yeah, it's hard. Yeah.

Helen  5:00  
Yes, hospital life's hard as well i must admit

Mike & Helen  5:03  
And our doors are open. Yeah. Now you have people who give birth the first time. Oh, yeah, we had lots of people. And they get to shut their doors. Yeah. We didn't. We literally have how many people? Yeah. OT's Physio's  Everybody coming in one after another. Your literal (community nurses) became a family. Which is why we're such an open house. It is literally just this is normal as it is.  we just say the truth.

Mike  5:32  
Yeah, we don't tend to hold back we it is as it is. We, the whole political correctness. No, we just say it because life is too short to try and work out what people were meaning. Say it - they know it's a lot easier. And it's done. But we've Yeah, but that was us so far. And we got to hospitals. Yeah. Bit by bit, he's got older we've had lots of operations, which have been

Helen  6:01  
ups and downs  all over the place. Operations -  they get cancelled, bless. But again, positive thinking you always got to try and think

Mike  6:11  
if one's has been cancelled, it means somebody else has had a really bad day who needs it more therefore.

Helen  6:17  
So the amount of times we've gone to Edinburgh, and yeah, I mean, even down to bless him he had an enema didn't he.

Yeah, clear out for pre operation had the enema.  Oh sorry, it's been cancelled. So poor Delano's, like yeah thanks. She didn't even take me out to dinner. But yeah, so it's been a journey. Yeah. On hospitals operation. Yeah. Yeah.

School, we got a fantastic school. It's got a hydrotherapy pool for him. And your staff are fantastic. Aren't they bless them?

Mike  6:54  
Yeah. So we're, he's, yeah, we've got to a place now where we're sort of starting to be comfortable. He's had an  operation not too long ago. Yeah. So we haven't got another one for five to seven years. Yeah. So yeah, we're

Helen  7:09  
not doing anything for the scoliosis. So we're gonna just leave that. But he's got such a big bend in his spine now. But his rib is now touching his pelvic bone. So he can't go any further. And so our decision was sort of based on the fact that you know, he's not in a lot of pain.

Mike  7:09  
is he in pain?No.  Can it get any worse? No. So there's no point operating, because then there's the risk of oh, this is now caused pain and other issues. And the benefit of actually having anything done wouldn't benefit him. So

Helen  7:43  
that's another thing is sometimes deciding what operations to have and what not to,

Mike  7:49  
we're not trained? No, this wasn't sort of a life choice. Went to school, you know, got trained in this. And then, you know, this is just two normal people doing normal things and suddenly,

Helen  8:01  
having to make adult decisions.

Mike  8:05  
It's not something that I was ready for. I still don't see myself as old but apparently I am. In your head, you're still that sort of young person and turn this off and do this? And should we have this operation? And it could be life threatening? You know, you've you're not prepared for it?

Cheryl  8:25  
And what makes you make the decisions as yes or no? How do you make they decisions?

Mike  8:34  
Logic, we just try and weigh it up? Isn't it? Is it gonna benefit? If there's no actual benefit to it, then there's no point in putting any risk involved.

Helen  8:47  
It was always we said about our medical team, we are like family. So I'll ask them, honestly, yeah. What do you really think is?  Oh the cuddly doctor? Oh, yeah. He's our scoliosis guy. And it was like, What do you think? And he's like, No, because you could end up doing more damage than then

Mike  9:08  
we asked him to medically first get your medical opinion ever, blah, blah, right now, personal level? If this was your child  What would you do as in sort of, you know, trying to gauge because I mean, obviously, we're not trained in scoliosis. So someone who knows about it will give us a better understanding. But they're normally bound by medical thing we actually just want to know, we want to get the information so we can make the decision. And unfortunately, trying to get that information is hard. Nobody wants to tell you. Everyone's too worried about being sued.

Helen  9:45  
It's like classic. Bless the NHS.

Mike  9:47  
Yeah, but they're more worried about big of the law and sort of everything. We just want to know. Tell us what it is. What's the what's the bottom line, right? What What's the worst that can happen? What's the best that can happen? And then we need to talk to work out the middle ground to try and sort of work out what we need to do. And it is difficult. And I must admit, our team, we've built up a rapport enough that I can say exactly what they think, which has helped us give us the information to make the decisions. If we didn't have that, going medically, I mean, go and do a search on scoliosis or dystonia. And then try and make a decision. You know, it's, it's first

Helen  10:33  
The first thing that comes up is lawyers. Yeah, that's, that's the worst thing. Because when, when I popped frog bless him, I did some research. And that was the first thing we seen.

Mike  10:42  
we want to see about cerebral palsy and seek help, how to deal with it. And it's like, oh, we know how to sue how. And it's just like, it's not about that. It's about that. It's about your child, making sure they are supported. And unfortunately, financial support isn't necessarily what they're needing. They couldn't care if they've got the bank balance that they are looking for support and nurturing and bringing them through the trauma, because it is trauma, I won't lie to you there.

Helen  11:17  
we've adapted like, we live life differently to other people.

Mike & Helen  11:23  
Which we find this with a lot of people. You have your friend group. But something like this happens. People can't understand.  They don't know what to do. Yeah, I suppose I wouldn't. Yeah, they don't know what to do. They don't understand. I mean, if you said to me, oh, we'll go out for a drink on say, Wednesday, but Wednesday might come about, well, sorry, had seizures, other bits and bobs gone on, to have to cancel, but this will happen regularly. And after a bit of time, your friends stop talking to you or stop inviting you out because they know you're probably not gonna be able to make it which then you become very isolated. So yeah, the situation does put you in.

Helen  12:08  
But we've got each other and i must admit  that's that's, we've got a good family. sort of circle. So I think that's actually pulled us through. Yeah, I couldn't have done this on my own. I don't see how single parents with a child. Yeah, hats off to them. Because I couldn't do it. I don't know what I'd be doing.

Mike  12:31  
Yeah, we even takes her tag teams, wherever you are one person.

Helen  12:35  
Literally I'd boot him  out of here. Your up.

Mike  12:40  
I've landed on the floor to take my shift. Yeah, yeah. When we because I mean, he used to. He slept for an hour a day. If that. one hour a day,

Helen  12:52  
you might get like 10 minutes. But what again? We didn't know What was going on? Did we? 

Mike  12:56  
Yeah, it was also constant crying as well, to get to literally hold him into a ball. Yeah. That was for him to end he'll fall asleep for an hour, and you're literally in that position for an hour. And then after that bang, goes back to crying again. So it was like, right, I've done 12 hours -  takeover.

Helen  13:14  
And then he goes stiff as a board and they were spasms. Again, we're not medically trained. So it's kind of like, what's he doing? And we'd record a lot of things. We found one thing that worked.

Mike  13:25  
 we had our phone and if you tell a doctor, oh, I've got such and such a rash? Or what colour is it? Oh, it's this colour. You ask someone else about that. And they go, Oh, well, it's a different colour. And it's a different rashes. So the doctor will actually get two different reports for the same thing. So it's a case of right. Well, the doctor actually needs to see it. phone. record. Right. Send. Andhe's like right? I can actually see from what you've actually sent me not from what you told me from what you've sent me. This is going on?

Helen  13:55  
 We got some dodgy pictures in our history. 

Mike  14:01  
They are medical. Yeah. So we have to send them and because I like is this normal for someone with a condition of such and such, etc? And they'll say okay, yeah, right. We need to test for this a little bit more or that's actually normal. It should be sort of more burst blood vessels and whatever, that they'll actually tell us. And we've tried to explain things to doctors before.  Doctors have to deal with parents who aren't necessarily fully clued. So they're like, yeah, so they're wanting to listen, he's actually limited. So if you start talking and blathering on about stuff, they'll go they'll shut off Okay, watch that hurt foot right so badly we'll be done. They won't actually listen to the whole thing. So we've really had to sort of To show them that this is happening, this is happening. Right? And I think we've got a rapport where they've actually knows, we need you to see, such as like happening, right? He needs antibiotics. And because they've already aware that we've done all the bits and bobs, we've sent them information that they needed. And then we'll sort of pop down and see them, oh just pop in quickly. And you know that they're actually very, very good for that. 

Helen  15:26  
Yeah, they listened to us. 

Mike  15:27  
But I think that's that's a build up. That's taken time. And being in this situation, we are at the hospital a lot. 

Helen  15:37  
We could leave Delano in the foyer a bit. Yeah. He he'd be known by loads of people

Mike  15:43  
He'll go straight to the ward. And he'll be sort of molly  coddled.

Helen  15:48  
Oh, gosh. Yeah. We love sitting up at the nurse's station, doesn't he

Mike  15:52  
He hears what went on at the weekend? Yeah, it's it's nice that yeah, we do have a team.

Helen  16:03  
Yep. And we've had such great times. I'm thinking, yeah,

Mike  16:07  
no hospital trips by our holiday. Because we go do stuff.

Helen  16:14  
DGRI my Hotel? Oh, yeah, we've

Mike  16:16  
we've had to really, and I mean, the other kids, we have to bring them along. Because,

Helen  16:23  
again, we always have loads of fun as much as we can.

Mike  16:27  
Yeah. I mean, we, as parents, you have to mask the trauma from the other kids. It is so nerve racking. But when you're not at home, you're in say hospital or hotel near the hospital. You're on holiday, raid the minibar! No don't raid the minibar  if you see the prices, the fun things and you've had to actually sort of push that side of things. So our kids haven't had a normal upbringing. upbringing is slightly slanted from everyone else's. Luckily, we have the young carers for them

Helen  17:05  
The young carers project.

Mike  17:08  
That's very, very good for getting kids like ours together. Where they can actually say something and not be looked at strangely. Cuz it gets like the silly little things like, we've got a shower tray for washing and doing and doing personal care. Well, of course, our youngest will go into the shower tray and have great fun. There's a shower, it's all slippy slidy. So it is like a bath with shallow. if she says to one of her friends Oh, and a shower tray. they go What? You know, they've don't have that, whereas someone in the same situation, yeah, like up and down. And they'll know all about them. So the kids don't feel sort of like, Oh, if I said something wrong, or they don't feel sort of so isolated again.

Helen  17:56  
But we also let the kids play well not play with the equipment, but

Mike  18:01  
it's part of the house. Yeah, part of our, our history and our sort of journey. They need to know it

Helen  18:07  
they have friends that come round, even like the little kids, they love playing with the hoists. they love the up and down

Mike  18:12  
the fact that it moves. It moves my ceiling. Yeah.

Helen  18:17  
So I put some of the kids in the slings and we'll just play as such, but then they

Mike  18:23  
understand. And when they see someone else out and about being hoisted. It's normal. Yeah, yeah. I mean, I did work in care a little while back. And some of the training was very useful. But it wasn't just a lot of the academic training. It was things like, I got put in a wheelchair. And for the day, or for your shift, you were in the wheelchair. So you were told you're not allowed to walk, you're in the wheelchair. And then you have to talk to the carer, it could be one of your colleagues to get everything done, and then you swap out the next shift. And it sounds good. What a waste of a shift. You've never realised how scary is in a wheelchair when someone's crossing a road because the person behind you walk to the end the road. They're pushing a wheelchair, you are actually in front of that. And you're thinking that cars getting rather close. And it's not until you actually realise how close this thing is. And it was little things like that you. You start thinking actually putting the kid in a sling at a young age. Get some to understand that it cuts the back your knees if you're in there a long time. So it's very nervous because you can't see behind you. And if you're swinging quite happily and you can't see behind you, if anyone walks up, it's very, very sort of makes you jump. Putting the kid in. They learn this. They know the feeling. And then they don't do it to Delano. They walk around the front of him to talk to him and it's little things like that, that we've, we that sort of thing. I think he should be taught in schools to be honest Sign Language sign language should be taught in schools. Half the stuff about financial institution and money should not be taught in schools but done by the banks. When how to take out a loan. I'm sorry. I digress. But yeah, simple things like sign language should be taught in schools. That way, everybody is able to communicate with other people. You know, the bait school should be basics of human society. And I think a lot of things like the hoisting, being in a wheelchair. That's something people need to experience to understand. And people now they say, Oh, we have to be inclusive. Have you ever tried it? And I want to have never been in a wheelchair, try it. If you want to be inclusive, try it and you will see why people should why things should be inclusive.

Helen  21:03  
disabled toilets. O the other day bless. Yeah. That seems to be the definition for a disabled toilet is it's got a handrail,

Mike  21:12  
yeah. It's a broom cupoards with a hand rail.

Helen  21:17  
Which is no good for the likes of Delano. Again, I think a lot of people need to be educated on

Mike  21:23  
if you have to give personal care to someone with cerebral palsy wants to be bigger than a small child. You're changing them on a toilet floor.

Helen  21:32  
Yeah. We didn't think that.

Mike  21:37  
 there's no sort of pretty little sort of trolley your pool round behind you. Everywhere you go. You are going to a public toilet and laying your child on a floor. The size of the toilets, disability toilets.

Helen  21:54  
the amount of times my bum sets off the air dryer. Very off putting when you're trying to pick Delano up off the floor.

Mike  22:04  
They're not designed for, I mean, you have to leave the wheelchair outside. Yep. Because you physically don't have space for

Helen  22:13  
someone was sitting in it last time

Speaker 2  22:16  
came out to find our daughter sitting on her phone. Yes, its  mounlded. It's fine. But yeah, so it's all the little things that you don't think of. But that sort of thing should be taught.

Helen  22:29  
Yeah. Just a bit more open. Yeah. Yeah. Because we went to it was the space. Oh, nice. Dark Space. Got Yeah, dark space. Yeah. And she felt so bad because we was changing Delano on the floor. And when she saw us picking Delano up and sort of placing him on the way she felt rotten, didn't she?

Mike  22:51  
Sorry for me because i was grunting.

that's the other thing of course, if you're trying to lift Delano in  and out chairs and bits rather than two people come up with toilet after grunting and groaning.you do get some looks Luckily, then you wheel the wheelchair out . Yeah, that's good.

Helen  23:12  
Do you remember the chemist? Which when you had Delano in the Papoose and he had a Strider Have you ever heard of Strider? So Delano sounded like this where the muscles so do is quite tight around the airway. So Mike's standing there

Mike  23:29  
I've got the papoose so you can't see the Delano from behind. So this poor lady with behind me, I'm saying with this lovely little lovely little person thing. This thing is I'm trying to bounce Delano to sleep and all the person behind me can hear is the strider from Delanos throat.  Yeah, so we try to have a bit of fun with it as well.

Helen  23:57  
Do you remember the time when it was so he grew out of the popoose. We got the backpack thing. Have you seen the backpack one? Well, should we got Delano in it, but we went to the cafe to try out didn't we.

Mike  24:14  
We tried to sort of get him out and about as much as possible. Yeah, the backpack was fab, just pop him in then

Helen  24:21  
I couldn't get him out. because he'd spasmed. got his legs straight out in the middle of the cafe. Oops sorry.

Mike  24:38  
Yeah, so yeah, he's literally stuck in it Yeah, then we had the uppsie.

Helen  24:44  
yeah the uppsie oh the uppsie

Mike  24:47  
The Uppsie is fantastic.

 Is that the walking one? Yeah

to see the Delano. Walk up to his sister. And his sister to actually dance for the first time was amazing. The look on his face 

Helen  25:07  
If you want any pictures of anything Honestly, we've got some gorgeous pictures of like the Upsee. And yeah, even the scoliosis and things like I can send you so if you wanted to sort of put it in, but yeah,

Mike  25:17  
the that gave him the ability to do something he'd never do. Unfortunately the Uppsie he's only to a certain height, because after that it's

Helen  25:26  
so it run out of me quite quick. Yeah.

Mike  25:30  
Yeah, the uppsie he was.

Helen  25:31  
So he was standing in the ward. So you've got these nurses. And again, Mike, standing there with Delano in the Papoose who takes about here, and all the nurses. So when I walked along, all I saw was the back of Mike, and all these nurses bend over.  You couldn't see Delano.

Mike  25:56  
I got a very bad reputation

Helen  25:58  
you have.

Lewis  26:04  
 So for some of our listeners who maybe don't know, would you be able to explain what cerebral palsy is?

Mike  26:10  
 Good luck.

Helen  26:12  
It's a it's an umbrella word.

Mike  26:14  
It's an umbrella word. It can go from I can't move my little finger to say full spectrum or spectrum of quadriplegic. There's

Helen  26:25  
there is actually a scale there is a G. C s something scale, which I tend to use when I'm trying to tell people professionally, what where Delano sits on it. So because he's in a wheelchair and needs full support, he can't eat, he's nonverbal. He needs head support really doesn't he suffers spasms. He doesn't actually he's, he couldn't tell his brain to move his arm. But his arm might move. But that would be his brain just telling it.

Mike  27:04  
The problem is his brain would pull one muscle and then in your eyes, brain would say right, I'm putting that one I'm gonna let that one go. in Delano is I'm gonna pull that one. Oh, well, I'll pull that one as well for humour value. And then they'll get to a point where he's actually spasming so hard, it can snap the bone. So he's that's why he's on the baclofen pump.  He was on baclofen for quite some time orally. But the problem is with spasms and reflux. If he was to throw it up, you couldn't give him any more. Because it's overdosing. But they then may have probably thrown up most of it. So he wasn't getting it. And then he was going into spasms where you could actually hear like things crunk who pulled both his hips out,

Helen  27:51  
both his hips popped out. He used to sort of be kind of twisted, so you'd have his leg over and sort of twisted wasn't straight, you could hold him like that.

Mike  28:02  
If you put your head in the middle, and he would lay straight, he was that sort of get a six pack. I mean, there was it was a little bit sort of harsh for him at that thing. But we that was our first operation. first real big, big one. Because I have to go into oh no it was the hips they had  to break his hip. Because if you imagine here's your pelvis you and me you've got a little bit of bone that makes a socket. So it sort of cups it. He didn't keep kept rubbing, rubbing and breaking down. So he actually had to break his leg, take a piece of the bone, graft it onto the top of the hip to make that cup, nail it all and then made it back together. So it's quite harsh but

Helen  28:53  
some people can actually live with the sockets out.

Mike  28:57  
Depending if its painful 

Helen  28:58  
again, you've got to decide what it's doing for Delano.

Mike  29:02  
Yeah, so it was a harsh operation. But he was very, very pained since having the operation. He's not been. So we made some good decisions. But then again, it is just a case of you've got to roll the dice. Yeah. It could have been fantastic decision. It could have been oh my god, we've actually made a major mistake here. But we don't know.  And that's that's I think that's the bit that plays on your mind because you think you didn't make the right decision,

Helen  29:31  
the baclofen pump, because also all the medication is on his having such a hefty sort of impact on his liver. 

Mike  29:38  
And if you have any medication orally, you're it's poison. So your body's trying to get rid of it. So even if you have say paracetamol or anything your body is trying to get rid of most of it and only a small fraction of what you actually swallow gets through to your system to give you your pain relief. Because of the the amount of medications he's on the more you have, the more it impacts liver, kidneys and everything else. 

Helen  30:06  
So, another reason why we had the pump was because it goes

Mike  30:09  
it goes directly into the spinal column, which then goes completely past all of your digestive system. So instead of having say 20 milligrammes however many times a day, you've gone to 0.2 milligramme direction to the spine, and he's getting the same amount. But he's not having the physical amount that's going through his liver and kidneys. So even that we've had to sort of think long term, if we don't do something like that. Now, when he's older, he could actually hit end up having kidney failure, liver failure, but it is, these are quite hard drugs to have. So making sure we're thinking long term, we had one of the operations with these legs. They said, right, there is one of the muscles you can cut. Yes, they did cut the muscle in end Yeah. And it's the one that helps say, you're me, run. Yeah, if you want to run, these are the muscles you'd be using. But they're not necessarily the muscles that you'd need to walk. But the problem was with the spasms, these were causing a lot of pain. So we said, do we get them cut? And they gave us the decision? It's just like, Well, honestly, is he going to ever walk again? Or walk ever? And we sort of made that decision. We don't know what he's capable of. He's, he had shocked us a few times. Do you make that decision, and we came to the conclusion, he's never going to be world class athlete, athlete, he's not gonna be a runner. So cut the running muscle if you can still walk, bonus. But I don't think we've what we've seen and what we were discussing with other medical people, the chances are slim to nothing of him sort of getting out that chair. So making that decision was like, Oh, that wasn't too much. There wasn't too bad a choice yet. But it's a harsh decision. Because you're stopping somebody from doing something possibly later on. But who knows? But that yeah, the the other ones, the baclofen one was a definitely, for me, the the big one that was putting a pump internally. And of course Delano at the time was tiny. And they showed us the size of the pump, and it's like a can of tuna. And you're thinking that's not gonna fit in there. And it's, it's quite a size and you sort of think, okay, so you've got to put it in. So it's quite harsh operation. Oh, but then they've got to push a catheter right around the back and put it into your spine. Well, as soon as you start going into spine, you can risk infection. If the spine gets infected, that goes straight to the brain. You know, the, the possibilities for fatality is increasing. Are you thinking? Did you need it? But oh, that was the best thing we had best thing we ever did. Yeah, I mean, actually saying that for him as well. Because having gone through having to hold him into a ball, and the nights of like, 24 hour crying, and there is nothing you can do normal sort of parental worries or to do 2 spoons of calpol. Oh, you'll be good in the morning. Know, you've got this and you know, there's nothing you can do. He's nonverbal, so he can't even tell you what's hurting. That is a mental drain. Yes, yeah. That is something I wasn't prepared for. I've worked in care before I understood the medical side, a little bit of the medical side of things. I've done training on a lot of the medical side of things. So it was like, Oh, this is not too bad. That I wasn't expecting, because it's your own child. And there's nothing you can do. And it's not a case of Oh, I'll phone someone they can fix it. No, you're on your own that there is nothing that can be done. And to see him from that to the baclofen where he was actually he can move his arm he can move his leg. He kicked his sister. we had Cake that day as well. But it's the little things. But yeah, the change from before and after the baclofen box was immense. But then again, we've also had friends of ours who have had the baclofen box put in, got infected had to have a whole thing removed and had to traumatic experience. So I think it is luck of the luck of the draw really? And what's best for the child and what's actually going to suit each individual person. But um, yeah, it's Don't get me wrong, it scarred us. We've got scars from way back. Which you never forget, but you just live with now. Think is part and parcel of life. Yeah.

Cheryl  35:33  
And just you two are sitting looking at each other. So you're obviously having that silent conversation of what those scars are.

Mike  35:38  
Oh, yeah, we're we're scarred. We weren't too good to start with. But yeah, it's definitely been an eye opener.

Cheryl  35:51  
And did you see yourselves starting as being parents? Or did you see yourself starting as carers? Where did you see where was the shift from being a parent to becoming a carer?

Mike  36:02  
To be honest, to be honest, I would actually say we've always been parents, the care of myself, the carer side of thing is something you do naturally, as a parent. The problem is, the caring side is if you're working in care, you get a lunch break, you get time off, and you get to go home after your shift. As a parent, you're done. As a normal parent, because my oldest was pre Delano. I could say, right, okay. Mom and dad, or you could you could sort of do what the kids deal with themselves. Whereas when you're a carer for someone like Delano, that's not an option. You are there. 24/7 you are on call 24/7. Even down to you know, oh, should, one of us got to work. Were there 24/7? At what point of our day? Could we actually say right we've got this amount of time free. Right now we we've said about the phone's been turned off. That phone could go any moment. He's had a seizure at school. Okay, we're in the car, we're gone. Now, not not nine times out of 10. I was up till about three this morning. Which is actually pretty good. Normally, so I would then sleep through till say one two o'clock, while Helen is doing the morning bits, and then would swap over and she'd have a nap and I'll do the next bit. And we do we roll it. Tig Yeah, tig that with a normal parent you wouldn't have because the kid right kids bed. Bed. They go upstairs, they get into bed. Right? And relax. That's not never been an option.

Helen  38:19  
I think the only time I refer to Delano as a job sometimes is when people question whether you work or not. Yeah. And even down 

Mike  38:30  
social aspect of it.

Helen  38:32  
Yeah, you don't work. Oh, I do. Yeah, that's when I say that I'm a carer. That was my job.

Mike  38:39  
There's a stigma. Yeah. Oh, so you don't do anything. I would love to see these people. And then suddenly realise what a real job is. I've worked, I've worked abroad. I've worked in London, I've worked hard jobs. And they are nothing. The status the money doesn't make anything. This is a proper job. And if you can do this, you've actually earned something unfortunate, it's not money. You know, it's people don't really understand the little things in life that you take for granted. Even down to things like stupid things, and it's gonna sound really selfish, but your hopes and dreams like I've always wanted to have a little house in the middle of nowhere. Buy a big piece of woodland, right do that with a wheelchair! Can't! Oh, gotta be close to a hospital. You know? So your you will actually end up as a carer losing all the little things you wanted in life, but you actually then suddenly realise. Did you want those? Are those the important things and all the things you've strived for yet, sort of indoctrinated as school was like, right, you've got to get a good job. You've got to get high money. You've got to go and do this. You've got to be successful. Yes. Success. Yeah. And it's just like not

Helen  40:14  
success to us any no definition changed.

Mike  40:17  
 successes. Like, are all the kids still alive at the end of the day? Yeah, we done good. You've really got to sort of change the perspective. You know, the pigs are happy. The kids are happy. We all the little things.

Helen  40:35  
But that makes us happy that we're in.

Mike  40:37  
Yeah, yeah. Priorities definitely changed. Yeah. Yeah.

Helen  40:40  
 It's not monetary. It's not. It's not everybody else's expectations. 

Mike  40:47  
It'd be nice to have some money. Yeah. Yeah.  Not going to happen.  Right Next question.

Helen  40:56  
You went into a little dream world there

Mike  40:58  
oh there was Three seconds of from the beach

Helen  41:04  
Oh the beach and a book. And the weird thing is, I don't think,  I'd miss my kids, if I yeah,

Mike  41:14  
I must admit, we've done that before. So it's like, oh, we'll look after the kids and we've actually had times where some actually been able to take the kids. And we've gone out it's just like, where the kids or I've been pushing the shopping trolley in because doing that.

Helen  41:27  
Yeah the rocker. I think every parent does you can tell with

Mike  41:32  
with a wheelchair you so you do it for more years. It's inbuilt. Now, you know, I properly rock the milk. Shake. Yeah, it's yeah, it's quite bad now. Yeah. But yeah, there's still little things I've done that I could do that the kids now know. Even when Oh, will go to bed early. You can have like date night? No, because we sit down. Wonder what the kids are doing? they're quiet, Yeah, we don't do peace and quiet now.

Helen  42:00  
 And you'd have to talk to me.

Mike  42:02  
Oh God cant do that.  can't be doing that.

Cheryl  42:06  
I was gonna ask if there was any moments due to your caring journey that made you laugh and smile, but everything is a laugh a minute.

Mike  42:10  
everything. We've, we've we've had, we've had to have humour in everything. Because unfortunately, it would get you down. You've got to stay happy. Even in times where they've really gone downhill rapidly and it is traumatic. We try and find the funny side. Just to just to push forward because to dwell on anything drops you down. If you drop down. There's a lot of stuff there waiting to push even further. So you've you can't afford to do it.

Helen  42:55  
Also, Delano does pick up on Happy moods. And if you are low, Delano picks up on that, and that makes him low, and then you're in for a really crappy day. If you allow that to happen. If you stay happy, he's happy. And your days happy. So yeah, you start it, you'll end up with

Mike  43:18  
if you've got chronic pain. If you allow yourself to become low, you feel it. You ask anyone with chronic pain, they'll say, if I'm happy, I can do things. The moment I stopped being happy, that's when the pain is noticeable. Not that it's not noticeable, but it's manageable. It's manageable when you're happy when you're not happy. It's not and I think that's where we have to we have happy we have to remain happy which is also then another drain you don't always want to happy sometimes i just want to be miserable. You just don't get the option. So yeah, it's I have a shed, I'm miserable to my shed. And I've got a tidy so yeah. I've tried

Cheryl  44:13  
and lastly, do you have any top tips that you would give to any other carers or any other people who might find themselves in the same situation as yours and I know before Mike you had said about building that trust and that rapport? Yeah. How honest you are with your your doctors. Is there any other top tips that you could give people?

Mike & Helen  44:34  
I mean, hang in there, don't don't fight the doctors. Work with them. I'll say it's everything works differently for different people. We've found humour works great. Some people it doesn't work for. Top tip

Cheryl  45:00  
It's about like celebrating your little wins. 

Mike  45:02  
Oh we always celebrate wins. Every every day is a celebration. Look for the positives. The negatives always gonna be there. And trust me, you can, you can sit and count them all day. But the positives, the ones to actually sort of aim towards.

Helen  45:21  
You're not on your own. Yeah, loads of people out there that are in the same sort of, or similar boat. And none of us know what we're doing. I think someone's just hold your hands up and say, Look, I don't know what I'm doing. But I'm doing my best and accepting that you feel more successful in yourself. Rather than waking up to be a failure.

Mike  45:46  
Don't panic, when you have a disabled child, you will get a social worker some of our friends because I'm I gotta give me a social worker. And they Stop, Stop panicking, they're gonna take the kids, the social worker, is there to help. And we've had some fantastic social workers absolutely amazing. And don't feel as if you can't say things or try and hide things, because they will spot stuff a mile away. Just say it as it is. And I mean, we've just said random things, which would probably make most people go what our social workers  like, Yep, I understand why. It's not a problem. And it's been fantastic. build a rapport with your team, that team is going to help you through a lot of the trauma. And keep going forward. There's always going to be something else that's going to be troubling. But there's also going to be something else that's going to put a smile on your face. 

Helen  46:49  
Our kids do that 

Mike  46:51  
and the wrinkles and grey hairs.

Helen  46:54  
Well deserved  their well earned 

Mike  46:55  
Yeah. Oh, yeah.  I'm only 18

Lewis  47:04  
Oh, guys, thank you so much for sharing your stories. I could honestly sit here and listen to them all day.

Mike  47:09  
Now, can I ask you a question? Oh, have you learned anything? From what we've been saying that you didn't know about people who are caring for disabled children?

Cheryl  47:20  
I think for me, you have just reiterated how important a role that you play with that. And your daily struggles that people don't actually see from my work that we do with unpaid carers, we see it quite often. And you're just you're not another number. But your story is so similar to how other people are feeling. So somebody listening to this will, we'll be able to gain something from what you've just told us. But for us, I don't know if you feel the same Lewis as but certainly what you've been telling us is, across the board, everybody has the daily struggles, they might be different daily struggles, and their coping techniques will be completely different from yours. But everybody's in the same boat as an unpaid carer. 

Lewis  48:03  
Its eye opening. It really is. I just can't believe how just how much is involved about it. Every time I hear an unpaid care story, it just blows me away of how much commitment and dedication you guys put in and it's it's outstanding, really, really is. So thanks for sharing.

Helen  48:20  
Thank you. 

Cheryl  48:21  
Thank you. Is there anything else you want to tell us before we finish up?

Helen  48:26  
Don't give him the opportunity. 

Mike  48:32  
I'm good.

Cheryl  48:36  
Thank you once again for being our guests.