Monday, January 31, 2011

Small stone - 31st January

Restorative sleep eases
the mind for hours
lifting constant imbalance.

Sunday, January 30, 2011

Small stone - 30th January

Laptop sighs at my request,
like an angry child
it throws another tantrum.

Saturday, January 29, 2011

Small stone - 29th January

As the bitter cold descends in the depth of night, the strangulated howl of an urban fox echoes in the empty street.

Small stone - 28th January

For the first time ever he has learnt how to express his feelings appropriately, in language. We are proud of this achievement, though we don't want him to be feeling 'sad' and 'scared'.

Thursday, January 27, 2011

Small stone - 27th January

The rich French blue of a pretty top calls out to me from the crowded charity shop rack. When I try it on at home it fits perfectly.

Wednesday, January 26, 2011

Small stone - 26th January

In the early hours of the morning he thunders down the stairs like a rampaging elephant, the whole house shaking in his wake. I send him back to bed.

Small stone - 25th January

Savouring a few hours alone, I realise how much I miss the peace of solitude.

Monday, January 24, 2011

Small stone - 24th January

The day starts in a fog of fatigue but ends in a glow of productive satisfaction.

Sunday, January 23, 2011

Small stone - 23rd January

The green woodpecker blends seamlessly into our uncultivated grass. Only the flash of red, as it bends its head to dig a long beak in amongst the blades, gives away its existence.

Saturday, January 22, 2011

Small stone - 22nd January

The bookshop, its windows plastered with 'closing down' posters, looks sadly different. It takes me a few minutes to realise that the racks of colourful magazines have disappeared, replaced by random discounted stationery items.

Who cares?

There is currently a big campaign being mounted about the projected future cuts to disability benefits, and rightly so. But until this week less was heard about the stealth cuts being made to other services, such as respite for the carers who save the state a fortune.

Unless you have been a carer, you will have no idea how hard it is to get respite. Not just a respite service which is suited to the child or adult cared for , but any respite at all. At the moment the only respite we receive is a fairly heavily specialist playscheme in school holidays, usually two five hour days a week if we can book a place. We are very lucky to have that.

This week there has been a bit of media interest following a plea for help on Mumsnet by a lady called Riven Vincent, who had reached the point of desperation in caring for her daughter, who has huge physical care needs due to cerebral palsy. Riven is herself disabled and as a fellow MS sufferer I know I couldn't cope in that scenario either. There are families caring for adults who are similarly struggling and it is happening all over the country. Health and social care has become budget rather than needs led.

Most of my experience of caring is for my children. I was lucky to have been given advice early on about Carer's Allowance, for which I was able to apply once son 2's severe needs had been identified about 14 years ago. This little bit of cash has been a lifeline, as due to his needs I was unable to return to anything more than a few hours part time work from home. At the moment I am not even earning from the writing work I now do after losing my job.

So yes, I get Carer's Allowance. That is £53.90 a week and is taxable if you reach the tax paying threshold. On top of that I can earn up to £100 a week (should I be able to find flexible work) but not a penny more, otherwise I lose the Carer's Allowance. To get the benefit the cared for person has to be on the middle or high rate of Disability Allowance for care (i.e. considerably disabled) and the carer has to be caring at least 35 hours a week. I did a quick tot up this morning and worked out that Son 2 needs a minimum of 80 hours a week care in term time and considerably more in school holidays. By care I mean that due to his non-existent sense of danger one of us has to be in the same room as him or within earshot and constantly checking. We live our lives in fight or flight mode and after 16 years it is taking a toll on our health. You'll notice that I haven't included night time hours in my calculation, as these vary, but again he needs supervision if awake. Whilst Hubby has always helped out with care in non-work hours, only one of can claim the benefit. If you care for more than one qualifying person, as I did for a few years, you can only claim the benefit for one of them.

We can cope with Son 2, just, but he is not as challenging as many severely autistic children. We were lucky enough to get specialist educational help early on which has helped his ability to cope a little. Hell no, we got that help because I, as his carer, fought tooth and nail for it. Carers are constantly having to fight bureacracy and advocate for the person they care for. In the next couple of years the process will start again to find adult services for him and I just don't know how I'm going to do it. Like so many carers, the constant battles have taken all the mental and physical energy from me.

Through his late son, David Cameron has personal experience of disability and being a carer. I really hoped that this might just feed through into policy, but instead the government seems intent on dismantling financial and practical support for disabled people and their carers. Please read this blog post by Catherine Hughes for lots more insight and links on disability cuts.

Life sucks.

Friday, January 21, 2011

Small stone - 21st January

The middle-aged man pushing a woman down the almost-empty street in a wheelchair swears loudly. I can't hear exactly what he says and she averts her eyes as they pass me.

Thursday, January 20, 2011

Small stone - 20th January

The commuters crowd the platform so tightly that my eyes, already blurred from cold drops, cannot make out the exit signs. I go the wrong way.

Wednesday, January 19, 2011

Small stone - 19th January

The thoughtless loud words cut, like a sharpened blade, right to the bone.

Tuesday, January 18, 2011

Small stone - 18th January

A battered house clearance van stands in the driveway of a house across the road. We worry about the fate of the elderly, wild-haired resident and are relieved when we finally learn she is still alive and being cared for elsewhere.

Monday, January 17, 2011

Small stone - 17th January

I push the tiny white tablet from the foil wrapping and, for the first time, swallow it with my toast. The day is spent in anticipation, hoping that the drug will make a difference but worrying about the clumsiness of my hands. Is it all in my mind?

Sunday, January 16, 2011

Small stone - 16th January

Despite cough and temperature he uses every remaining ounce of energy on the trampoline. A sound of dull thudding, punctuated with laughter, fills the room.

Saturday, January 15, 2011

Small stone - 15th January

The spiral crazing of the vandalised shop window reminds me of an ammonite. Two empty shells separated by an eternity.

Friday, January 14, 2011

Small stone - 14th January

A sudden craving for chocolate sends me scurrying the newsagent. Hidden within a double-pack of glossy magazines is the perfect-sized small bar of bubbly sweetness. I can't wait to get home.

Thursday, January 13, 2011

My Kindle - four months on

I was lucky enough to get a Kindle soon after they were launched in the UK, so have had a few months now to use and assess it. The considered verdict is that I still love it. Initially I was unsure about how I would enjoy reading on screen, but I find it very easy on the eyes, in fact I think I actually read faster on the Kindle than I do from a paperback book.

One of the downsides of reading on the Kindle is that, unlike printed material, VAT is charged on ebooks and the VAT rate has just gone up to 20%. Partially perhaps as a result of the tax anomaly, Kindle books are in most cases not much cheaper than their paper versions, despite the fact that no trees were killed in their production. Ebooks do, of course, have fixed editorial and set-up costs, but most of the variable costs, other than royalties, of printing and distributing a physical book are lost, so I don't really understand why there isn't a bigger discount.

For anybody existing on a very low fixed income, the cost of even a paperback book has to be a seriously considered purchase nowadays. I'm therefore taking full advantage of free Kindle books and low cost promotions, such as the selection of books for £1 each Amazon offered over Christmas, but my purchase of regular priced books has not increased too much, despite the undoubted convenience of the one-click Kindle store. I have to restrain myself.

A huge benefit of the Kindle is the ability to download free samples of books. I have over a hundred on my Kindle now. Some of these samples are of books I would like to buy or borrow from the library one day, a digital wish list, if you like. Some are for reference, to enable me, as a writer, to analyse the first few pages of a book I don't really want to read in its entirety, just as I sometimes do in my local library. Some samples I just download for curiosity's sake and fairly quickly delete from the Kindle. I have already downloaded a couple of books just on the basis of having been totally hooked by the sample, Sarah Rayner's One Moment, One Morning being one of these.

I find it hard now to remember what reading was like before I had the Kindle. It could never totally replace printed books, as its back and white screen cannot translate illustrations and photographs well, but I do find it easy and convenient for fiction and some nonfiction. I also use it to store some personal documents, such as lists and pdf crochet patterns, though I haven't yet dared put my novel on it!

I'm a total convert to digital books, with the proviso that I will still buy physical books too. Best of both worlds, really.

Small stone - 13th January

Sometimes it takes far too many paralysing hours of heartache to realise that the problem is not yours, but theirs.

Wednesday, January 12, 2011

Small stone - 12th January

Patients wait, coughing, wheezing.
Head buried in book
I need to relax but can't.

Tuesday, January 11, 2011

Small stone - 11th January

It won't change anything, but the chat with like-minded friends over lunch is so absorbing that we are the last to leave the restaurant.

Monday, January 10, 2011

Small stone - 10th January

I am reminded just in time to switch on the slow cooker. By the time they all arrive home the smell of simple home cooking gives the false impression that I am a domestic goddess.

Sunday, January 09, 2011

Small stone - 9th January

Hours later some blades of grass still appear frosted with icing sugar.

Saturday, January 08, 2011

Small stone - 8th January

The automatic door is broken. A salesman stands nearby and, with a smile, holds it open for the lady whose walker is loaded with carrier bags.

Friday, January 07, 2011

Small stone - 7th January

The rain falls heavily and steadily, wrapping the city in a cloud of grey depression.

Thursday, January 06, 2011

Small stone - 6th January

The warmth envelopes me like a security blanket, numbing my senses. Only when I step outside do I feel truly alive.

The fear

Sometimes the fear gets to me. The fear of whether this is it, whether we have actually achieved all we are going to in our lives. The fear of how we are going to support ourselves financially up to and beyond retirement. The fear that with the savage cuts in services that are taking place there will be no appropriate care and support for son 2 when he leaves school and home. The fear that son 1 is never now going to have the opportunities that we had.

Most of the time I try to keep the fear at bay. I keep writing and hoping. I grab at occasional small ad-hoc work opportunities which arise and I tell myself we are lucky, we are not in debt and having a severely disabled child at home does bring in a reasonable level of disability benefits and child tax credits. Most are probably not so fortunate.

Recently Hubby met up with some old friends, there were four men in total in their mid-fifties through to early sixties. All are now sadly unemployed and of them only Hubby is signing on, even though he no longer gets Job Seeker's Allowance. If this situation is typical then unemployment figures must be seriously understated and there could be many people just scraping by on the savings they were wise enough to make in better times, not wanting to suffer the indignity of the Job Centre.

I know so many others whose jobs are currently under threat. When I wake early, suffering palpitations, I tell myself we are not alone. No one is safe any more.

Wednesday, January 05, 2011

Small stone - 5th January

The squirrel crashes in a hyperactive manner around the garden, as if he has eaten too much Christmas chocolate.

Tuesday, January 04, 2011

Small stone - 4th January

The delivery men are polite and efficient as they install our new laundry machines and take away the old ones on a bank holiday. I sigh with relief at finally being able to bury my nose once again in lavender-scented fresh washing.


Nicola Morgan has just written a great blog post about research.

Research is important for book two which, although set in the present, has flashback sections to a couple of important and sensitive historical events. I've been tying myself in knots trying to research these so as not to get it wrong, not to offend anyone.

But I can see now that this fear is preventing me getting the story down and a first draft written. I know enough to do that without the detailed research, which can come later. I must no longer use the need to research as an excuse.

For me today is the start of a new writing year. Thank you, Nicola, for reminding me what I should do.

Monday, January 03, 2011

Small stone - 3rd January

Flashes of electric-blue
as the jay branch hops
in skeletal giant pear.

Sunday, January 02, 2011

Small stone - 2nd January

Rapid flutter of my heart
wakens me like a
trapped butterfly in panic.

Saturday, January 01, 2011

Small stone -1st January

As lips struggle to express all
the thoughts in my head
it's a sign to stop and stare.