Learning about Intellectual Disabilities and Health

In 2002 I heard 'Laura' give her first presentation at a local authority event. It was an important milestone for Laura - a teenager. Her presentation was so moving that I invited her to share it with a wider audience. Her only request was that her name should not feature. The following is the script from which Laura read.
Margaret Flynn.

4. CHILDREN SHOULD BE SEEN AND HEARD: A YOUNG CARER'S PERSONAL VIEW
by Laura

My name is Laura and I am a young carer. I've been involved with Barnardo's for numerous years now. I look after my mother who has epilepsy and learning difficulties.

From an early age I knew my mum was different from other mums. My mum didn't behave like other mums.

I first saw my mum have a fit at the age of four - the hospitals didn't diagnose her with epilepsy till I was eight. If they had of asked me what was wrong with my mum, I could of described to them what happened when my mum was ill. They all thought she was having black outs for years. From that point on I started looking after my mum properly. I did try to speak to the doctors but they just didn't want to listen, if they'd listened they would have known that the blackouts were epileptic fits. The thing is they would ask mum what happened when she was ill but how would she know what happens when she was unconscious? Only I knew that as I was there.

Mum used to spend a lot of time in casualty when she'd been out alone and been unwell. No one would phone to check up on me to see if I were okay, half of the time I didn't know where she was and I only found out if I phoned the hospitals when she had gone missing. This one particular time when she had gone missing and hadn't been back for hours, I phoned the hospital and found out she was there. They said she was due to be discharged so I told them not to discharge her until I come down to pick her up. I made myself very clear on this point. Me and my friend had to walk to the Royal Hospital as we had no money for the bus, I had told the hospital this to let them know I might be a while. When we got there they had allowed my mum to take herself home when she were in no fit state to go anywhere on her own. They didn't even seem to care that I had phoned with direct instructions. It was like, well, I didn't speak to you on the phone, you didn't tell me so I don't care, that's your problem. My friend and me then had to walk all the way back from the hospital. The only consolation I had was that they had made sure she'd gone home in a cab.

It was at this time that I started noticing just how confused and ill my mum was, her mental state was worsening not just as a result of the epilepsy. Mum had many appointments to see psychiatrists but wouldn't turn up and I couldn't make her go, as I was very young at the time. If she had of gone, they could have clinically diagnosed her and found out what was wrong. Unluckily the people in the area we lived in, noticed too.

All the kids started calling her 'mad Susan' and I got into a lot of stick for stuff my mum had said back to them on occasions, she just couldn't ignore them. This went on for numerous years and as everyone knew her, she was always taken advantage of and had her purses stolen from her own house. The police could never do anything about it as my mum couldn't identify the people and, even if she could, in six weeks time, when it would go to court, the story would be different. Also, as she were unwell, the police insisted on an appropriate adult to be there with her and wouldn't allow me to be that as I were under eighteen, so Barnardo's acted as that when needed.

This one time, my mum was attacked and we had to go to court to get the person convicted. This was some years ago. It took a while to claim criminal injuries and the welfare solicitor would only see my mum with an appropriate person too. Barnardo's also acted on her behalf in this matter

Mum also has trouble recognising people which has lead to problems like the ones I've just mentioned. For example, when Aileen or Louise from Barnardo's phones or comes to our house my mum can't tell the difference between them and gets very confused over who is who. If the gasman turned up to read the meter, she would tell him her life story and show him her income support books. This is very worrying as you could imagine what could happen if I wasn't there at this time. It is very easy to take advantage of her because she would either, if you knocked at the door, let you in without knowing who you are or open the door and shout abuse at you. You could knock at our door and say to my mum that you are an old friend and ask her if she remembered you. She would say yes and invite you in even if she didn't 'cos at times it makes her feel good to think she has friends when the people she invites in are only there to take advantage. Mum also say inappropriate things at the worse of times, for example, at the doctors, the social, to my friends and so on, etc. This is very embarrassing for me and people have had a good laugh at her and my expense. Afterwards I can laugh 'cos it is funny but when its actually happening it is not.

I helped my mum by cooking and cleaning for her. I also helped her to understand things and remember things as she wasn't a very good reader and if she could read it she couldn't understand what it meant. Because of this, when I was older, I had to take charge of running the house and paying bills. I had to fill out her income support forms and I filled in my first DLA form when I was fourteen.

As I had to talk to the social or say for instance, the gas, when they asked for my name, I used to tell them about my mum and that I was calling on her behalf. They told me that I needed my mum's permission or would just refuse to speak to me and hang up. This used to annoy me as because you're a young person, they see you as a child, when you ceased to be a child years ago. The sad thing about being a carer is that sometimes you hardly get a childhood, a chance to play and enjoy yourself. The sad truth is that you lose a part of that innocence that makes you a child and with no one there to support you, you lose it a lot quicker.

Because of the troubles I had come across trying to speak to professionals, I began to start pretending that I was my mum whenever I picked up the phone. It was like who am I? Am I Laura or my mum? It was like I'd lost my identity.

Talking about identity, that's one thing I don't have. My mum has never been able to provide me with my past. She has said a lot of things but when asked again, a couple of years later, the story has changed. I know my mum used to have a social worker years ago when I was very young but I also think I had one years before that when I was around 3 to 4.

This thought led me on to apply for my social services records with the help of Barnardo's. This was kind of like a quest to find out who I am, information neither my mum nor my family could provide. That was quite a while ago now and I haven't even had a letter telling me it might take a while, no acknowledgement at all, I'm still waiting. I understand how busy these people are but it couldn't hurt to take a moment of their time to write to me and tell me that they acknowledged the fact that I had wrote to them. I am eighteen at the time I wrote that letter, I still am. It isn't like I'm a little kid no more when I used to and still do, phone companies for my mum, so why am I still made to feel like that kid when I'm ignored.

I have mentioned Barnardo's a lot within this as they have been an important part of my life. As you may have noticed they are mentioned a lot, this is because they have done so much for me and my mum over the years and they have always supported us. I have been really lucky in that sense as I don't know where I'd be right now if I hadn't had been put in touch with them. What they do at Barnardo's is great and it's a pity there isn't more support like that out there.

Another issue Barnardo's helped me with was when my mum got kicked off the doctor's list and I had trouble finding my mum a new doctor. She got kicked off the list 'cos she used to go down to the doctors demanding her medication on the rare times I were in school. She didn't understand that you had to phone for a prescription and wait 24 hrs. When they tried to explain this to her she would get very abusive. She had one of those personalities where she could love you one minute and hate you the next. On this occasion that she went there she attacked a receptionist and got herself kicked off his list.

We had a lot of trouble finding her a new doctor. For example, we went to a surgery mum used to be under but he had no places left on his list so he told me a doctor in the area that did. Funny enough my mum had been under this doctor before too, (bear in mind I was told he had lots of places on his list) I went to get the application forms. When I took them back, the doctor was by reception and looked like he recognised me. When I handed in the form with mum's name on it, he handed it back to me and said 'no'. Now I knew he had room for new patients but he wouldn't take her on. He must have remembered her 'cos I know mum can be a handful and I understood why he didn't want her back on the list. As there were a limit of doctors in the area and I couldn't get her a doctor, Aileen from Barnardo's got in touch with a health service that registers you with a doctor in your local area.

Mostly things have changed now that I'm eighteen, people will speak to me on the phone now, doctors in the hospital listen to me, and I'm treated with a lot more respect as a carer than I did when I were younger. People are always telling me how great I am for doing what I've done for so many years now that I'm eighteen but the funny thing is that when I was under eighteen no one encouraged me and I was ignored. It's a pity that I didn't get this respect when I really needed it. Today children are treated as young people and not just snot nosed children that don't know a thing. I just wished people had this attitude when I was growing up, it would have made my life a whole lot better. I think all young people, not just carers, want to be just recognised as young adults.

Most people didn't understand how I felt; only my friends did. My friends were and still are there for me, especially the times when my mum was unwell, mentally as well physically. There were times when she was convinced that people were climbing in through the roof and through the attic into my bedroom. One time a friend put a light bulb up there and the lead led into the plug in my room. Because of this I had to leave the attic door open. One morning I woke up to find a light bulb smashed on the carpet and the lead gone. My mum had come in during the night thinking the lead was a rope and people were coming in so she had pulled it down.

My mum also had a fondness to disappearing with her suitcases and leaving notes saying she were a bad mother and I'm better off without her. This never used to bother me much as she would get a cab somewhere and then come back and stay with a neighbour until morning when I woke.

This one time though she never came back so I went to the police as I was very worried. The first thing they did was to throw me into foster care. Although I was fourteen and they had to do it, I tried to tell them that I was fine to look after myself but they had to do their job. The foster parents seemed very nice and it was a relief to have a break from doing everything for myself, but no matter how nice they were all I could think about was my mum.

These foster parents that seemed so nice let me down. The day my mum came back, my uncle came to the foster parent's house to collect me. They told him to go and they will tell me, this was at 1 o'clock. They didn't tell me till 3 o'clock and they knew how worried I were about her as I'd confided in them. They said to me to come and stay with them and not go back to my mum. I told them I wanted to go home and they then threatened me that I mightn't be allowed back to her. They had let me down after I had trusted them.

My experiences with school weren't so bad. I tried to get into school as much as I could but couldn't. The welfare officer used to come and pick me up and take me to school even if I told her that my mum wasn't very well on that certain day. I used to have to wait for her to drop me off so that I could run back home to look after mum. The school itself were very helpful and understood how difficult it was for me. But eventually I had to leave without my GCSEs. It was them that put me in touch with Barnardo's.

There is a lot of ways in which mum and me could have been helped.

Someone to sit with mum while I went to school and got my education
Someone to listen to me as I could have been a help to doctors
And more help for mum - a supporting figure.

Although having someone to look after my mum while in school would have been a great help, even if these services were available to me, it wouldn't have worked out anyway. My mother has always refused outside help which put me under a lot of strain and as we had no family as such to turn to for help, it made everything a lot harder. We hadn't spoken to our family in years and we have only just got back in touch a couple of months ago. The only person we had that was anywhere close to family was uncle, who I've mentioned earlier and he wasn't my real uncle. Unfortunately he died some while back which again left me with no means of support.

Another thing is that although my mum once had a social worker, no one could really define whether she had a mental health problem or a learning disability so in the end she ended up with no support as they had the attitude of, well she doesn't fit in with my job criteria. It was okay for the social workers, they could go home at night and leave all that behind them. For them it were a job, for me it's a way of life.

My mum's disability has also affected my personal life as if I wanted to get my own flat, that wouldn't be an option. With me gone she couldn't cook, manage the bills, look after herself and she would get herself into so much bother like annoying the neighbours, plus putting herself and other people in danger. I've described some of the things my mum has done with me around, can you imagine what would happen if I weren't there. That thought is unbearable.

I have recently left part-time work that I've been doing only for 3 months, as a result of my mum. I hated leaving her and constantly worried about her. It were also not fair on the residents in the nursing home where I worked 'cos I couldn't get in as much as I would have liked. My social life suffers as well and I don't get to see as much of my friends as I wish I could, but my friends understand. For the last 4 to 5 years they have been my emotional rock and have been there for me,

I have only one message to give everyone and that is 'children should be seen and heard'. Forget the cliches. A young person or child should be heard as more times than most, they have important information that can help you and their family. Children mature a lot quicker today than say twenty years ago, so why do we still use the old, over-used cliché that children should be seen and not heard, when it obviously isn't applicable to today's society?

But things have been looking up lately. I have just finished my GCSE in English language and have studied psychology at GCSE level. I am also doing volunteer work at Barnardo's this summer with the activities, and looking after the younger children. Next year I plan to go back to college and do my maths and go on to do an 'A' level in English language.

I think young people need support 'cos without it they find it hard to cope and blame themselves for times when their parents or whoever are ill. Its like, if only I'd done this or that, maybe they wouldn't have been ill today. I think its important for adults to support persons like myself, because no matter how mature or grown up a person may be, we all need a little reassurance every now and again.

I hope this has helped some of you in some form. Thank you for listening.

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