Stephanie McInroy is feeling tired after a disrupted night's sleep. Her three-year-old brother Lee, who suffers from autism and a number of health problems, kept the family awake until 2.30am. The toddler, who can't speak, often finds it hard to sleep.
"He can't decide which is night and day," says the 15-year-old Perth High pupil. Jim, her six-year-old brother, has a milder form of autism and can't stand noise, so Stephanie helps to calm him down when Lee is unsettled.
"I am always busy helping mum in the house," says the teenager, the eldest of four children, who spends a good deal of her time being a carer. She lends a hand with the shopping, getting the boys dressed, changing nappies and preparing dinner. Mum Mandy and dad Colin are grateful for her help. They don't know what they'd do without it.
Stephanie is one of more than 100,000 young carers in Scotland, one in 10 of whom is a secondary school pupil. This weekend, more than 500 of these youngsters will gather in West Linton in the Borders for the first Young Carers Festival to be held in Scotland. As well as providing a well- deserved break and fun - from taking part in bungee runs to setting up a radio station and surfing - the event will give these children an opportunity to speak directly to key decision-makers about how young carers' services should be delivered in the future.
The move to consult young people is part of the Government's response to the Care 21 report, commissioned by the former Scottish Executive to outline a 10-year agenda to improve the lives of Scotland's 600,000 unpaid carers. Launched in September 2005, the report, which reflected the views of over 5,000 people, made 22 recommendations including calls for young carers to be one of four priority areas and for them to have their own national forum.
At the festival, which will be attended by Shona Robison, minister for public health, and Adam Ingram, minister for children and early years, MSPs will be put on the spot during political speed dating, where groups of young carers will have four minutes to get answers to their questions. "The festival is a good way of getting carers together," says Stephanie, who for the past 18 months has been receiving support from the Princess Royal Trust for Carers. The trust offers practical help and organises fun events and meetings with other teens in her position.
"It is not just good to meet people in Perth and Kinross, but to meet young carers from across Scotland, people who know what it is like. I am really looking forward to it. For me, it is a way to let people know that there are young carers out there who care for people with autism."
Stewart McFarlane, one of two support workers at the Trust's Young Carers Project in Perth, hopes the festival will lead to better funding for resources and services for children like Stephanie. The project currently supports 60 young carers aged from seven to 18, who live in Perth and Kinross. Another 30 children are on the waiting list. "I don't like to have a waiting list," he says. "Why should a child be identified as having a need and then be put on a waiting list? Young carers have to have access to support. Children have the right to be children."
According to research carried out by the Princess Royal Trust for Carers, which is organising the festival on behalf of the Scottish Government, only 3,000 of Scotland's young carers currently receive support from the 50 young carers projects in existence north of the Border.
A policy shift over the last few years has been towards mainstreaming support for young carers rather than the Government giving money to dedicated projects, says Louise Morgan, the trust's development manager for Scottish young carers. She believes more awareness training is needed for teachers, so they are fully aware of the issues.
"Projects are not funded to be able to deal with the capacity," says Ms Morgan. "Dedicated services for young carers have mostly developed within the voluntary sector."
Across Scotland, young children are taking on responsibilities beyond their years and this can go unnoticed by professionals, partly because children are good at hiding the fact that they are carers and because people don't always spot the signs.
The Care 21 report found that 21 per cent of young carers spent between 30 and 39 hours caring a week. In 2006, another survey found that almost one in five in Scotland receiving dedicated support services were aged between six and nine. A further 41 per cent were aged 10 to 13. The average age of a young carer is 12.
"It is difficult to give a typical day in the life of a young carer because of the range of conditions they are looking after," says Ms Morgan. "You can get one who is doing physical duties to help, or you get the other extreme, where it is emotional support. It might be slightly over the norm for helping in the house but at the very worst end, it is the loss of childhood."
Looking after a family member can have a huge impact on a young carer's social life and relationships with their peers. Having friends over or going out can be difficult, making it hard to maintain friendships. It can also interfere with school and home work.
Young carers are 45 per cent less likely to leave school with any kind of qualifications than their peers, because their caring role can mean they miss a lot of school and often struggle to keep up with homework.
It was Stephanie's guidance teacher who picked up signs that she was a young carer when she began to be distracted in class. The school put her in touch with the Young Carers Project. However, pupils can often be too self-conscious to divulge details of their home life.
Initially, Andy Howard, a young carer and pupil at Cardinal Newman High in Bellshill, didn't tell his teachers about the situation at home. For the past seven years, the 15-year-old has helped look after his mum, Kate, who has bipolar disorder, a long-term mental-health problem which can result in her needing to be hospitalised. He gives her emotional and practical help, from listening and talking to her to walking the dog, cutting the grass, making a meal once a week and keeping the house clean and tidy.
Andy can find it difficult to get to school on time and to keep up with homework. "When I was younger, I used to make up excuses," says Andy, who is planning to join the fire service when he leaves school.
"When you are younger, you are embarrassed to say you are a young carer. You just want to be like everybody else. Now I tell the teachers. I have had to give up a number of lunchtimes to catch up on things, which is not good. Sometimes I just want to go down to the gym and chill out. There are just not enough hours in the day."
Andy says there are around 20 young carers in his school. He can spot them a mile off. "They come in with bags under their eyes, they often need to rush home at lunchtime and they have no time to do their homework," says Andy, who urges teachers who notice tired or distracted pupils to enquire discreetly if there are issues at home.
Support from school is vital for children to have a chance of getting a good education and fulfilling their potential as adults. Those who slip through the net can end up missing out on work, higher education and social opportunities later in life.
While some schools offer help, including different homework and additional one-to-one time with their teacher, the level of awareness and support can vary, says Mr McFarlane. "There is still work that needs to be done in high schools," he adds. "Some have more resources than others. The biggest thing for young carers is to have an environment where they are understood, where they do not have to explain themselves on a continual basis, especially in secondary school where you have so many different teachers."
The Scottish Government says it has been working to improve support for carers by increasing breaks from caring and providing information and training for NHS staff on supporting carers. In the past 12 months it has provided Pounds 9 million to support NHS boards in identifying carers and signpost them to sources of local support. And in June it pledged Pounds 4 million to help deliver 10,000 extra respite weeks per year.
The Additional Support for Learning Act, it adds, identifies young carers as a group who may require additional support at school, and a self- evaluation guide has recently been developed for young carers to help education authorities and schools assess the provision.
In advance of the festival, Shona Robison paid tribute to the important role played by young carers whose dedication was, she said, to be applauded. "It is, however, important to recognise how this can impact on a person's physical, mental and emotional health," added the minister. "Particularly for young carers, their role can restrict their own future opportunities. That is why we have been working to improve support for them: increasing breaks from caring, providing information and training for NHS staff and publishing a toolkit to help ensure young carer services are as good as they can be. However, more needs to be done to improve support for young carers in Scotland."
Further support in school is one area the Government is keen to look at, as it develops proposals for the new carers strategy next year.
Young carers have to be emotionally strong and make many sacrifices, but Stephanie and Andy are keen to point out that their life is far from grim. "I feel really lucky that I have a loving family," says Stephanie whose eight-year-old sister, Abbie, is also becoming more involved as a carer. "The only thing that stops me from being a typical young teenager is that my brothers have disabilities. Apart from being a young carer, I am a typical teenager."
Like normal teenagers, they are both looking forward to having fun at the festival. "I guarantee you hundreds of people will make friends they will never meet in a lifetime," says Andy. "Peer support is very important. A festival of that size should not be serious it should be fun."