Sunday, 7 June 2009

Carers Week.

So here we are in the middle of carers week, as a carer I am pleased that such a thing exists, a means of informing the world of the huge number of people who have given up there careers and livings to care for some one else.

Of course, as soon as you have children you find yourself in the world of caring and you do it willingly because they are your children and you quickly learn that childhood is a fleeting thing, you look away for a second and it is gone, and the tiny bundle of noise is grown up, self assured and making its own way in the world.

But it doesn't always work like that and the empty nest that so many parents dread never happens, and you can be left with the ones that don't fledge for one reason or another and you look on in wonder at your contemporaries who are so sad that their offspring are finally ready to leave and live there own lives thinking "You don't know how lucky you are!". By now, under normal circumstances, we would be looking forward to retirement, having holidays without the kids, being on our own again. But that is not going to happen.

Sarah will never be able to look after herself, she couldn't possibly manage a healthy diet by herself, she knows how to put her washing in the washing machine, but she has yet to work out that you need to put in detergent and set the dials and press the buttons. That bit is going to take the best part of another three years of showing her one step at a time over and over again before she will know how to make the washing machine actually wash your clothes, and she still does not know that clothes must be dried before you put them on, simple stuff for most of us but for Sarah, with all the other stuff going on in her head this series of actions is incredibly complex.

She has no idea about money, We've tried to give her some understanding of how it works by getting her to pay for things herself at our very understanding local shops, so she understands that there is an exchange of money for goods, but she cannot get past the coins all being pennies and notes are just random pieces of paper. I think she is beginning to understand what a pound coin is, but has no concept of the different values of the rest of the coins. Her first transaction involved getting change so for Sarah, subsequent transactions must also involve change, she thinks they are just giving her back the money she has paid them and doesn't like it if it isn't forthcoming. School, college, the day centre and ourselves have been tackling this one for years now, but she is not having any of it, we've gone down the shape route, we've tried colour, we've tried getting her to look at the numbers on the coins all to no avail.

We know all about independent living, and would love Sarah to be able to make use of it and make herself a life outside of the home she has here, but it is an uphill struggle and she does not want to live anywhere else, she likes living with us. God only knows why, we not the easiest people on earth to live with, we have to admit to being both headstrong and a little eccentric, and definitely no good at housework. On the upside we are good at cooking and gardening and seeing the funny side of almost everything. But this is her home, it is where she wants to be and at the moment it is where she belongs.

Above all this, she is our daughter, she is part of us and we love her to bits. Granted, our lives would be different if she had not been autistic, the choices we made would have been different and we would in all probability be a lot better off than we are now! But we did what we did with Sarah in mind, We moved to a place that showed more respect to her needs than the place we lived in, and in the process lost our livelihood, but as she grew we realised that caring for her took a lot more care and time and effort that one parent could give and stay healthy, while she is out during the day at school or whatever, you get done what needs to be done, and when she is home you are 'on duty' and because she doesn't sleep too well and tends to wander sometimes at night you work in shifts. This all becomes normal and everyday, we don't even notice we're doing it any more.

Trouble is the wages for this job are just £53.10 a week. This is called Carers Allowance, you are allowed to earn a bit more on top, but it isn't much, and we have to claim income support to make ends meet. Not exactly a living wage. We don't run a car and we don't smoke, I can't actually remember the last time Bill and I went out together, and to be honest, I don't think Bill has got the confidence to go out and be sociable with strangers any more, because when you have someone who is different from most other people your friends tend to slip away. They just don't know how to speak to you, so you end up avoiding them to save the embarrassment. The only people you talk to are other carers, because they are the only people who really have a grasp of why you may have to say sorry but I've really got to go now because something has to be attended to which is just not going to wait. You are constantly on call. And no, we haven't had a holiday together for years. Just the odd couple of days and usually either one or the other of us, and usually just a family visit.

So there you go, that is my reason for wanting to let the world know about Carers Week. I notice it will be discussed in parliament today, and I was with a group at a function in the Welsh Assembly yesterday to mark the week, but this is all just talk and discussion, it won't get close to the nub of the matter which unfortunately is money. Improving day services and the extension of respite care would go along way to helping people like us, giving us a bit of breathing space, but these services are being cut at the moment. So, if the local authorities can't afford to look after them carers have to look after them at home, so perhaps the government could look again at the carers allowance and just increase it a bit, just so that we could have a little bit of a life beyond caring, I don't think it's too much to ask.

Ok, rant over next post will be about the service users disco as promised before, honest.......

Tuesday, 2 June 2009

Ok, It Got Better!

Goodness! How things change, yesterday I was talking about the worst side of Sarah's autism, the side we have being seeing most of for the last few weeks. When she came home from the Day Centre yesterday she was giving us nothing but the best side. According to the communication book we maintain with the Day Centre staff she had a good day and was cheerful and cooperative.

She has just had a week away from the Day Centre as they were closed for half term and the last information we had from them wasn't too good, she was being as challenging there as she has been here. It is always a worry when she displays similar behaviours at home and at the Day Centre, as a rule she keeps her two personalities for two different places. Sorry that's not clear, I should explain that if we are having a hard time with her at home, the chances are that she is being an angel with everyone else. This also works the other way, all through school and college and now at the Day Centre and classes she attends from there, if they are finding her difficult we were getting the best of her.

I should also explain the communication book. It's a bit like a hand written twitter in an reporters note book, which goes back and forth every day in Sarah's bag. I tell them how she is at home and anything else I think they may need to know, and they do the same in return on a daily basis. Short and to the point, unlike this blog!

So this morning is all good, everybody seems to be happy. Onward with the week..... Next post will probably be about the monthly Day Service Users Disco. Don't laugh, this is serious stuff!! Alcohol is consumed, music is ghastly, dancing is something to behold, wheelchairs and zimmers something of an encumbrance on the dance floor but overcome. Everyone should be made to attend one of these, they would see a completely different aspect of disability/learning difficulty or whatever label you want to put on someone not the same as you!

Monday, 1 June 2009

So We'll Get On With It...

I've not said a lot about Sarah, her condition, her behaviour, her just being Sarah for a couple of weeks. The reason is that she has been exceptionally awkward, no, I should have said difficult, that would be more honest. We have had some days that have left us reeling, knowing that whatever is done is going to be wrong.

This is nothing new, it happens every now and again with no warning and can last a couple of months sometimes. She appears to be working something through in her mind, and because she cannot express it beyond herself... probably because the autism would incline her to believe that we know what she is going through and what she is trying to work out... she is is beside herself with rage.

She gets so frustrated with whatever it is that is bothering her at the moment you can see her almost graphically reaching boiling point. She shudders and shakes, gets redder and redder, becomes less and less coherent and then it all culminates in some very loud screaming and a little bout of hitting her head or biting her arm, although I have to say, there is some remarkable control involved with the self harm bit of this display, which leaves me wondering sometimes how real the rest of the display is. It could just be the best way she knows of expressing her frustration with us for not knowing what she is so concerned about, brought about because of the absence of sufficient language or rather, the inability to use the language in a neurotypical way.

In between all this there are moments of sheer joy. We spent a day in Cardiff last week, went to the cinema and saw Star Trek, had fish and chips in Caroline Street, got back to Aberdare to late for a bus home so had to get a taxi and the whole day was brilliant, nothing appeared to bother her at all. The next day was the absolute opposite as she took her frustration out on me. I've got a couple of little bruises as reminders!! She is always mortified when she gets it so wrong she hits me and I always feel so sorry for her when it happens, thankfully it is a very rare event.

This sounds awful doesn't it? But it's not all that bad, and we are used to it. It is important to say that it is not continuous, and of course it is manageable. It wears you out, that's for sure, and there are the odd moments when I consider throwing the towel in and calling social services and visiting the doctor on my own account instead of the fruitless visits on Sarah's behalf, only to be redirected back to the community nurse, who then sends us back to speech therapy. Sarah is 23 and has not seen a doctor, that is GP or specialist, concerning her autism, since she was 10 years old. We were seen to be coping and that seems to be the criteria used when assessing need.

So we get on with it. We know it will stop soon, and when she left for the Day Centre this morning you would not have thought the last few days would have been possible, perhaps we have turned the corner on this one, we shall see...