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Should it be this difficult to ask for help?
Caring for a brother with a learning disability
My Hypo Brother, my brother has ADHD
Should it be this difficult to ask for help?
I am a young carer to an older and younger brother with complex learning difficulties, but I also have to be the other responsible adult in my family because my father also has learning difficulties and cannot deal with events and the boys. My family has suffered and struggled with situations that no family should endure, but more importantly these situations could have been eased, or in some cases prevented, if professionals in care fields had supported us and done their jobs.
As in the beginning we were naïve to all the services out there which could have helped us, my mum was not told about any help available until my brother was 11 years old. We idealistically thought this would then enable us to get help - how wrong we were. The social worker firstly did not take we siblings into account at all, even though due to John's (my older brother) disabilities, my life was consequently disrupted: I could not have friends round my house, I could not go to clubs and at times my mother could not help me with every day simple things, as she had to sort out my brothers.
No one was helping my mum to get the correct provisions needed, even though she tried every possible avenue for help, resulting in me taking action into my own hands at 10 years old - I wrote a letter to Kenneth Baker, then our local MP, for help. I think I had just had enough - I had my first big school disco and my mum could not help me get ready for it because my brother was having seizures. For a 10 year old girl, the disco was the biggest event possible and I couldn't even get ready for it!!
It was lucky I wrote to Kenneth Baker as he turned out to be our hero. He helped arrange meetings with the heads of education and social services so that my brother could be safe in a school for his needs and for both my brothers to attend special needs' schools miles apart. He also got taxis so that I could get to school on time, as previously I had to wait at a bus stop until my brothers had gone to school. It was due to his intervention that the professions started to take an interest for a while.
Unfortunately after a while, when I was 11, we moved to Leatherhead. Suddenly we lost the little respite we had had and there was no contact from the professionals. This also meant that I had to start travelling to and from school on my own, as my mother had to be there for my brothers. This meant me getting the train and either walking from the station to school or the half an hour walk home.
The one professional who, during my life has been of any help, was John's community nurse. He tried everything within his power to get the social worker to help, although this amounted to nothing. More importantly, he took into account the whole family, as he knew what we were all going through and the different disabilities of my brother and dad. He realised my mum and I were both at the end of our tethers. He called multi-disciplinary meetings but the social worker again did not turn up and although minutes were taken, stating what needed to be done, such as the Children In Need and carer's assessment, years on, nothing has happened. Through my experiences as a young carer, I have seen many failings within social work first hand. The biggest thing is that these people hold a position of trust with the families, and sometimes they are seen as a beacon of hope. So you can imagine it causes great distress to desperate families when what they have promised and what they do does not happen in practice.
They also need to visit families regularly to get to know their client's family, as they are affected by all that occurs. Although this seems obvious to a casual observer, it is yet to be realised by the social services. If those in the family who are caring break down and cannot cope any longer, then this will cost the state much more as placements will be needed for all the family members. Also, by taking the siblings into account, it can allow them to have a life as well, which they are otherwise restricted from having. Professionals also need to keep proper and accurate records of all involvement, whether by visit or phone calls. As my mother and I have recently discovered, this was not done in our case. There are no records of certain serious situations concerning my brother. If my mother could manage to keep records and documents of everything, and it is not even her job, then surely a social worker can too, as it may otherwise be assumed to be incompetence.
All professional bodies must start communicating and acting together to help, otherwise what is the point of them? If they had done more for us then we would not be in the turmoil we are now in. John's files were supposed to have been given to the adult services in 2000 and they were meant to become involved, however it wasn't until 2003 that they were finally handed over.
The change between children's work and adult's work - transition - is not effective. At 19, when John got his adult social worker, the first time he met him, the social worker told him that he could not go home, causing great distress to John and our family. This was because the social worker had not read his files properly, so knew nothing about our situation. However, just reading files is not adequate enough for the social workers to understand the situation and 6 monthly visits are not enough. If my brother had been living alone, for all his social worker knew, he could have been dead! It makes you query whether social workers have the ability to look after family members with disabilities later in life. One thing that all social workers should be made to do is live with people with learning disabilities so that they can experience first hand what it is like for the families. You can't just turn up every now and then to see how they are doing. You have to appreciate the every day problems and conditions that these families cope with. As many judge a book by its cover, professionals have to look deeper and really understand how their clients' operate. To a casual observer John could be passed off as 'normal' but this is most certainly not the case.
I would love to go to university and have a life on my own, but because I know there will then be no one to help my mother look after my brothers, as well as my grandparents, and also no one for her to turn to, it makes me feel guilty. So I have to keep two separate lives - one at school, where I appear to be just a normal carefree adolescent, and one at home, where I take the position of the second parent. This should not be the case. We should be allowed to have a life of our own without feelings of guilt. Young cares should be able to have a normal life, which they all secretly wish for, but instead, we - the siblings - are not taken into account and so this is just not possible.
Caring for a brother with a learning disability
I'm one of the young carers who care for a sibling with a learning disability, but I am one of a staggering 175,000, young carers in Britain. And many young carers (I think) have many similar difficulties, whether they care for parents with physical disabilities or grandparents with sensory depravation.
Chris, my brother, was diagnosed autistic at a point I had never heard of the word. But now its part of my life - probably too big a part - and I am grateful to Young Carers who have provided chances of otherwise rare respite, even if I can’t always take them.
I’m lucky in some ways. Those who care for parents I imagine have it harder because there is often no-one to take their place once in a while. My brother does have three other ‘viable’ members of the family, and writing this at the beginning of September, 2001, he is about to go off to boarding school at the Forum in Dorset. Though I sometimes am ashamed to admit it to myself, I am glad he’s going. We often feel we just do not have proper control over him any more.
He is 11 years old, and nearly as strong as me (I’m 15). He’s begun to realise that if he wants to do something, we can often do very little to stop it. I constantly get frustrated because he will just grab something, not ask for it, let alone say please. It’s just the small things that irritate you the most, and so I get irritated a lot of the time.
Towards the end of primary school, certain responsibilities began to fall my way, as I am the eldest child. They weren’t necessarily created by Chris - often I would have some menial task whilst may parents dealt with whatever Chris had done. And he did a lot of things. Somehow, along the line, I found I had to entertain myself more at home, and, though I didn’t become anti-social, I was non-social. That’s something I want to rectify ASAP, and Young Carers also helps me this way.
It would be misleading to give you my full experience as a young carers, as what someone has to deal with can differ so much. But I also know that I would have missed out on so much, and not met so many wonderful people, if Chris did not exist in my life, so I thank him over-excessively for that. I love him tremendously, and I think he loves me too.
I have an 8 year old brother who has ADHD (attention deficit hyperactivity disorder) which means he has a shorter attention span, has a very short fuse and can be very obsessive. Many people don't see the good side of ADHD although there are many good sides of ADHD; my brother. Christian is very caring and loyal like most other children with ADHD also my brother has endless amounts of energy which is great when you want to have a laugh and fun; but can be bad when you want to go to sleep at night!
But bad things like mood swings and endless swearing can be avoided by the change in diet. If we keep my brother away from oranges, pepparami, and the ticking time bomb - smarties, his tempers are far shorter and not so common. But if you want to have a sweet lovable, loyal, caring brother you have to ignore the ignorable and deal with the I cant believe you just did that!
But however annoying my brother can be, I wouldn't live without him,
Daniel
Hi I am Ten years old and I live my mum, dad and my brother; my Brother has Aspergers. This means that he finds it hard to concentrate and is not as kind as some people can be. Sometimes he can be nice but usually he is quite mean towards me.
It is awkward living with some one who has Aspergers because my brother calls me names and try's to hurt me. He does this when he can't get his own way; he argues with mum & dad when they ask him to do something, he says this is because they do not ask him nicely; but I think they do. When we go on holidays he has ruined it by being grumpy, shouting and hitting people. At dinner time if he does not want to eat he starts to swear and argue.
It's hard for me to play on my own because my brother always want me to play with him, if I say no he gets grumpy. Sometime he steals my things and hide's them and doesn't say where he's put them until he feels like it.
I usually can't have friends home to play or stay the night because he always hurts them and ruins our games, he also turns the T.V off if he can't watch what he wants, if we go out to restaurants he is rude, It makes me upset when he behaves like this and I wish he wouldn't.
I am 15 and have a sister of 10 with a learning disability, which means that although she is 10, she has the mental age of about 6. When she was born she had some breathing difficulties and this may have caused the problems she now has. No one knows what's actually wrong with her but she does have loads of symptoms of something called D.A.M.P. My sister finds it very hard to pick up things that normal children just learn naturally. Everything has to be taught to her and reinforced, and even now she is bad socially and doesn't understand what is rude and what isn't. Once we were in a supermarket and she asked a teenage boy with bad acne if he had chickenpox.
My sister is very obsessive and never knows when to stop talking about things. She will go on and on about the same thing until everyone shouts at her to be quiet, and even then she'll mutter something rude under her breath.
I don't really get on with my sister but there are times when I can play games with her and everything is fine, but then she'll ruin it all by being rude, arguing or saying she doesn't like me.
I have a lock on my bedroom door in case she goes in there to take my jewellery (to add to her obsession with rings!) or she might paint my chest of drawers with pink sparkly nail varnish.
Even though I have put up with her for all these years, sometimes she is really funny and makes us all laugh and I couldn't imagine life without her.
My younger sister has downs syndrome. She is at a special school and is really slow at learning things and doing them. She takes ages to eat her dinner, get dressed and even things like putting on shoes can be really time consuming. When she was much younger she used to wander off - once the police were called and had tracker dogs out looking for her - she was found on a nearby building site playing in a puddle! She has no road sense and can't work out how fast cars are travelling so she can't be trusted to go out anywhere on her own.
She doesn't really understand money or time very well and we know that she will never be able to lead a life independently. Even our family holidays can be awkward because someone always has to be 'in charge' of my sister. Once we were in a shopping centre trying to sort out my new school uniform and my sister wandered off and it took ages to find her - it was really scary and frightening because there were so many people about but we eventually found her. I felt really angry and resentful at the time that she had dominated MY trip!
At home my bedroom door must be locked so that she doesn't go in and scribble on my homework books.
Sometimes I have been embarrassed about having a sister with downs syndrome - all my friends have normal brothers and sisters and I was the only one who even knew someone with a learning disability. But then I saw some teenagers making fun of my sister on her coach coming home from school and I was really upset for her and felt protective because it wasn't fair. But her friends and her just laughed back at the 'normal' children because they had dyed hair and looked like punks and they thought they looked funny!
She is loving and happy and is so grateful for everything that is done for her. We just have to accept that she will always lead a different life to the rest of us.
My name is Amy and I am 13 years old. I look after my mum day in and day out. The only time I am not with my mum is when I am at school. She has MS which is Multiple Sclerosis and she finds it hard walking and cannot stand for more than about 10 minutes, unlike normal people. My mum finds the housework and gardening difficult, so I do it all. She is really bad in the summer because of the heat.
My mum was diagnosed when she was about 32/33 which is about 8 or 9 years ago and she has recently been classed as disabled - this means she doesn't have to walk long distances.
She gets annoyed when people park in the disabled area when they don't have a badge showing - mum and I assume they are not disabled and that seems really wrong as she finds it so hard to walk.
Last Updated June 2005
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