Inverness schoolboy battling cerebral palsy says "not every illness is visible"
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00:00Hi, I'm Lennon, I am 13 and I have Leplegic Cerebral Palsy.
00:06Obviously, kids have noticed that I've got it and have maybe had a couple of comments about it and my weight and that.
00:16I've always wanted to be a bit heavier.
00:19Before I told people, they didn't really know I had anything.
00:23So, it's good to make people aware of things that are not visible and disabilities that are not visible.
00:32When I have a bad day and it's a school day, sometimes I stay off because I just can't do anything and sometimes I even cry.
00:42That's how painful it is.
00:44I mean, I never used to be able to ride a bike. I never thought I'd be able to ride a bike.
00:48I couldn't even cut my food and now I can cut my food better.
00:52I mean, there was a lot of doubts that the doctors thought I couldn't do and I've just, I guess, pushed through.
00:59When he was born, he was actually induced 13 days early and he was born, he wasn't quite well when he was born.
01:11He was told that he was probably better suited to getting general anaesthetic at five, so we waited for him to get the scan.
01:20Because it was safer for him to get it at that age.
01:23We were told before that there was possibly hypermobility, which he has got as well.
01:28The scan, didn't it? It came back with, it showed shadowing on two cortexes of his brain, which is how they came to the conclusion that he had brain damage and cerebral palsy.
01:43People sort of take for granted with Lenin, sort of walking in a straight line and stuff.
01:47Because he's got coordination and balance problems, he's kind of compensating for that all the time.
01:51So, yeah, he gets particularly tired after doing, not even physical activity, just the sort of basics, you know, day to day.
02:00Walking to school and back or, you know, he doesn't, like, he won't stop. He'll still try.
02:07You know, if there's a football game, he will go right in there and it doesn't matter if he's knackered at the end of it, he does try.
02:13That's testament to Lenin.
02:14You know, if he powers on too much, then he ends up, it costs him, like, two days of being at home, being in bed, being absolutely exhausted.
02:22And he's done that since he's, you know, since he's been little, really.
02:27From when he was, the second he was born to right up until him starting pre-school, there was always something that was different.
02:36Like, there was a delay, you know, there's a delay in his walking, there was a delay in his arms if turned in.
02:43Just see, we went to the park and back, for instance, you know, like, Lenin would be completely in that report.
02:48Yeah, so the nasal gastric tube, it's been fed up his nostrils, down his throat, into his stomach.
02:54Yeah, so the purpose of it is because, like Gillian said, he dropped down to, like, 29 kilos, so for his height, that's quite a dangerous weight.
03:04But he does struggle and he does, he needs that little bit of help, you know.
03:11And people need to be aware that just because you might walk down the street and see Lenin and just think, oh, there's nothing wrong with him,
03:19but they're not seeing the other 24 hours of the day that we see him and the seven days a week that we see him.
03:26So they've seen him for five minutes and they're not understanding how tough it is on them.
03:31We do, we see it, you know, we've got a care plan for him at school because sometimes he can't, he doesn't manage at all.
03:38He just can't manage, it's just too much for him, you know.
03:40I think he's very brave, you know, I think he's taken it all with a pinch of salt.
03:44I think he's never sort of complained about the situation.
03:48He's just got on with it and pushed forward and just made the most, ever since he was little, you know, he's never let it hold him back, you know.
03:56He would love to be able to go and play 90 minutes of football, you know, and he will try, but it's just not physically possible.
04:03So it's a shame to see that, you know, obviously it's heartbreaking as a parent to know that he can't exert himself that way.
04:08Awareness is not just, like, what is cerebral palsy, but like, the fact that, like, kids can be cool.
04:15When I was going through a heap at school, because he was low in weight and stuff like that,
04:19people thought because they came from about that they were allowed to do that and they needed to understand that they weren't, you know.
04:24I believe it's probably more common than people realise, through our journey personally,
04:28we've met quite a lot of people who have cerebral palsy or their child has it, you know, and it's different for every case.
04:36Because it's a brain damage, you know, it can be different parts of the brain, so people can have different symptoms.
04:42A lot of people maybe think of the squastic cerebral palsy, where people are more wheelchair-bound and they're twisted up with their muscles and stuff.
04:49So that's a more common one. So Lennon's just as relevant, because when he gets tired, then his muscles can twist up and we can see it in him.
04:56So his hands, his wrists, his feet and stuff like that can turn him, and that's all part of the condition, you know.
05:01You know, they're suffering in silence, you know, but people don't get it.
05:07People don't get how the parents feel about, and how the child's feeling as well.
05:12You know, especially if you're in a large setting, you know, and let's say Lennon starts getting really tired or just like falls asleep,
05:22or a child gets really knotty and things, people stare, you know, or they'll get an opinion across, you know.
05:30Instead of understanding that, you know, the bigger picture.
05:34I just think that the more adults, children, people, the more awareness that's out there about children with needs that aren't so visible,
05:47I really think that there needs to be more addressed.