If you follow our stories you’ll know that we have chosen PKAVS as our charity of the year for 2015. I am a huge fan of all the work they carry out in the local community but one of the real pulls for me is the support they offer the young carers in Perth and Kinross. A Young Carer is anyone under the age of 16 living with a parent or sibling who requires additional care. Sometimes these children are the main carers, sometimes they help a parent look after their brother or sister; in all cases though their life is impacted by the very real demands that an illness or disability brings into a home.
PKAVS offers support for the young people involved by holding weekly respite groups and occasional trips away. These focus on fun activities and give the kids a chance to play with other children and enjoy all the normal, carefree, childhood fun that they often miss out on at home.
PKAVS also provide the young carers with a support person who is there specifically to help them with their needs and wants. Sometimes that’s just a chat, time out and a space that they know belongs only to them.
It’s a very difficult subject to talk about; the vast majority come from loving families but the sad truth is that the additional demands on their homes make ‘normal life’ almost impossible. These are kids who live with pressures that many adults would struggle to deal with and yet who are very rarely first in line for that extra special one-to-one attention all humans crave.
When Helen, Claire and I talked about who we thought might best illustrate exactly what PKAVS does in the local community, we knew our first port of call would be one of these amazing young people. We decided to chat to Holly, who at fourteen is eight years older than the youngest carer on PKAVS radar. She is an extraordinary young girl and in my six months of chatting and writing to the Big Personalities of Perthshire I have never been as moved as I was when I spent an hour in the company of Holly.
We meet at PKAVS Tuesday night respite group at Blairgowrie Community Centre and I spend a wee bit time blethering to Billy who runs the session for kids ranging in age from six to fifteen. They are exactly the same as any other group of children; some are loud and boisterous, some sit drawing and chatting and the overall atmosphere is fun and happy. Holly arrives, an elegant young girl with hair piled up into a top bun and wearing a dress and strappy green heels. She explains that she’s off to a church meeting with the family after our chat which is why she’s all dressed up for group. She’s smiling happily, lip gloss as gleaming and shiny as every other teenage girl’s you’ll meet.
Holly lives in Blairgowrie and attends the nearby High School where she is in second year. She lives with her mum, her twelve year old sister Naomi, eleven year old sister Katy and nine year old brother Noah. Noah has severe complex learning difficulties, ADHD and epilepsy. Holly explains to me that this means he has the mental age of a two year old, can’t talk and is still in nappies. Noah can’t control his emotions and often has outbursts that result in him unwittingly lashing out physically at his sisters and mum. As the eldest, Holly helps her mum care for Noah and the rest of the family.
“We moved to Blairgowrie three years ago from Stoke-on-Trent after my Mum’s best friend married a Scottish man and moved up here. We used to come up in the school holidays to stay with her and it was always so nice that Mum decided we should all come and live here! I like it here, but I prefer to be at home than school so I can help with Noah. It’s a big job for Mum on her own.”
Holly is a softly spoken, articulate young girl who was at ease with me immediately, an air of an old soul surrounding her carefully chosen words. I recall my own son in second year; prising him off of his bike to tidy his room or wash a few dishes was a chore in itself. The entire year was filled with conversations about what standard grades he was going to choose, what song the band would cover and how fast he’d just come pelting down the side of Kinnoull Hill. I’m sure anyone with teenagers has a similar story to tell.
Holly, though, is different. She has the undeniable quality of a bright girl but none of the wonderfully trivial nonsense that you are only allowed to indulge in between the ages of twelve and seventeen. I can’t help feeling that as much as I’d hate to go back to that teenage angst, it was a huge part of growing up. But I can see almost instantly that she has leapt over such minutia and has landed straight into a life of responsibility.
I ask Holly if she’s chosen her subjects for third year and if she has any plans for college or university. She thinks for a moment before answering;
“I’m taking the usual subjects like English and Maths and I’m definitely taking art. I love drawing and painting. I think I’m going to leave at the end of 4th year and go to Perth College to do my NC in Early Education and Childcare. Then I’ll be able to do my HNC and HND. I want to work with children with special needs because I understand what they need. I’m not really a fan of lots of written work because I’m dyslexic so I find it difficult and struggle with exams and tests. But I think I’d be really good at helping kids like Noah.”
We talk about what she does in the house to help her Mum and how she cares for her wee brother. Her life as a young carer is as normal to her as mine is to me and yours is to you; and yet she is carrying out a level of care that I honestly don’t think I could muster. Even at 43. I am in awe of this young girl as she chats about Noah and how she and her mum split the responsibilities of a demanding family life.
“Noah doesn’t sleep very well and he’s up most of the night; he switches between my Mum’s bed and mine and that way we can both get a bit of sleep. But when he’s been in with me from half past one in the morning I find it hard to get up for school. I think that’s maybe another reason I don’t enjoy school so much – I can be a bit grumpy if I’m tired! Then after school if Mum makes tea I look after Noah and sometimes I make tea and she looks after Noah. We all help with the dishes and I help with the housework. He needs round the clock care so there’s never really a time when there’s nothing to do.”
I wonder where, amongst all of this, Holly finds time to be herself, see her friends and do her homework?
“I do my homework when Noah goes to bed at night with Mum, or sometimes in the morning before school or in registration! The school know our situation and they are really good with me, understanding if we’re running a bit late or if I don’t get a chance to get everything done. It does limit me a bit but I do go out sometimes with my friends. I like to come along here on a Tuesday to the PKAVS group and see everyone for an hour or two. I think because everyone else is in the same boat as me they understand and it makes it easier not having to explain everything. They always have arts stuff going on as well so I really like that and it feels like you get a proper break and you can just relax and be yourself.”
I could see while I was waiting on Holly that the group was full of fun and if you didn’t know it was a respite session you’d think you had stumbled into a youth club. I ask her what PKAVS means to her and if it helps her to have them working for young carers in the area. She is nodding her head as she answers.
“I have a one-to-one person called Katy and I just meet her for chatting and talking about stuff. But it’s good to have that just for me. Sometime I feel quite stressed and isolated and then I feel guilty because I wish sometimes it wasn’t like this. You know, with all the attention on Noah. But he’s still my little brother and even though it can be tough he is the one who isn’t well. I worry about him because if he has a bad fit then he could die and when I remember that then I just forget about everything else – it doesn’t matter.
Katy helps me to let this go. Sometimes I bottle it all up but then one little thing will get on top of me and I end up really upset. I had a bit of an emotional breakdown at school once and it was horrible. PKAVS helps us all - that’s why I was happy to help them when they needed a young carer to help them explain what they do for us.”
I know a little about this; Billy had explained that Holly was invited to deliver a presentation with Raymond, the Head of Young Carers in Perth and Kinross. They were presenting to the P&K Children and Young People’s Strategic Partnership in in an attempt to raise awareness of young carers and the many challenges that they face, just as Holly has described.
I tell her I’m very impressed! It’s not easy getting up in front of people and talking and I know plenty of grown-ups who could never do it.
“It was at the council and there was this big square table and all these people in suits. I was really nervous but I did it. We just wanted to explain to them why we needed to raise awareness for young carers and why it was important to support them away from the families and in their families. I hope they listened to us.”
(How much do you want to track down who was at that table and find out what their plans are!?)
My next question is really from one girl to another. How do Holly and her sisters find time to step out and just be themselves?
“Well we all share a room so we do spend a lot of time together. We’re either all arguing or all getting on. They steal my clothes and makeup which really annoys me so I suppose that’s pretty normal.
My mum has a friend that sometimes takes Noah to her farm to play on the hay bales and tractors and then we have a girls’ day. On Mondays my mum has her friends round and their kids come too so we hang out with them and Noah just sits with us so it’s fun for all of us.”
Throughout all of this Holly has talked about her brother with much love and affection. Her admission to worrying about him and the fits he takes almost has me in tears and I think of how fortunate I am, my own little brother off fixing PUMA helicopters in the Arctic Circle as I was chatting to Holly. There is the same age difference between Holly and Noah as there is between me and Ian. I recall being fourteen to his nine, with a thirteen year old Tracey in between us. We swung between being best of friends and worst of enemies, arguing, joking, and sharing everything some days and nothing the next. Back then, as it is now, our relationships revolved equally around all three of us. Yes, at different points in our lives one has needed the others more. But that’s ok. It’s what we’re here for because I love my sister and my brother unconditionally.
And this is what gets me. You see, apart from the very real day-to-day impact on a Young Carer’s life the emotional strain of watching on as someone you love and care about deeply struggles with their illness has to be the most heart-breaking part of all of this and I can’t help but wonder just how far that worry she talked about runs. Noah may be a disabled nine year old boy but he is also, simply, Holly’s wee brother and she loves him.
Tell me something about Noah that doesn’t involve his illness, I ask her.
“Oh, he loves buses and trains. He also gets really excited whenever an aeroplane goes past. His favourite show is Mr Tumble and sometimes if he’s been up early watching it in my room the tune is in my head all day long! It reminds me of him so much. And he loves to get a cuddle, we like to cuddle each other.”
Her face lights up and she chats excitedly, proud big sister shining through every word.
I can’t begin to tell you how much Holly has touched me. She is an inspiring young woman who chatted with ease, who spoke with much thought and with real care for her Mum, sisters and Noah. What PKAVS brings to this story is a chance for Holly to step out and be a teenage girl for a couple of hours a week, to paint and draw without any demands on her and to have someone who is there only for her.
If she has moved you as much as she did me and you would like to help then you can do so in a few ways.
DONATE – Donate Online Here to make a difference.
TEXT DONATE - Text PKAV01 £10 to 70070 (suggested donation)
VOLUNTEER - Contact PKAVS at firstname.lastname@example.org and let them know when you’re free and how you'd like to help.
Finally, you can leave your comments for Holly below and let her know you care.