Slowing down for the summer

This year, conscious of the fact that my blogging had previously slowed to a trickle of posts, I've been trying to post three times a week whenever possible. But even that is becoming a chore at present. The current financial and physical limitations of real life mean that I rarely have anything exciting to report. The warm weather has now triggered a recurrence of the leg spasms, thankfully not yet quite as painful as earlier in the year but very frustrating all the same and I can't get out and about as much as I'd like.

I'm in the nowhere land of waiting in respect of novel one. I'm still in the planning and research stage of novel two and, with the advent of the school holiday at the end of next week, I don't expect to start actual writing until September at the earliest. I have at least set up a folder for novel two on my computer and I have a new notebook, so that's a good start, right?

I've decided to slow down on the blog for a month or maybe two, to give myself breathing space. A summer holiday, if you like, as I shan't be going away. I will still post, but only as and when I have something worthwhile to say, not because I feel I should be blogging (those posts are always the worst, aren't they?). I am still reading your blogs, mainly through Google Reader, and apologise for not commenting more often. I've become a lazy blogger, seduced perhaps by the speed and ease of communicating on Twitter.

I may, however, be commenting less on Facebook and Twitter too. I'm still there, reading, but just feel I have little of interest to share right now. My eyes are also telling me I spend far too much time in front of the screen. I love social media, but sometimes it's necessary to step back just a little, to concentrate on real life and those around you.

Invisibility

There's been a lot in the media in recent times about how women become invisible in the media when they reach a certain age...some say 40, others 50. There was been quite a fuss last year about ageism at the BBC where older women seemed to be particularly targeted. Most women's magazines seem to want articles about younger women up to about 35, there are only a few magazines targeted at the members of the slightly older age group who are not quite yet ready for Saga magazine and its like.

All this made me start to think about fiction and commercial fiction in particular. After all, we always hear that there is no market for books about middle-aged women and many writers of chick lit or women's fiction seem to write about characters younger than themselves. With my first novel, I was no exception.

For a number of reasons I've actually been feeling quite invisible in life lately, so this lack of older characters was something I wanted to address in my second novel. As I'm planning the book, the two female characters aged in their 50s and 70s are proving far more interesting than those in their 20s, though I'm sure the younger ones will develop more fully in time, especially when I start to actually write.

Older women have so much life experience, so many talents, it's a shame if their voices can't be heard...

Travellers' tales

The travellers returned home at 10am yesterday and at 10.45 I was out of the house to meet the lovely JJ for lunch in London.

After a very easy journey, enlivened by a train driver on the Bakerloo line whose clear, well-spoken announcements made both me and a lady sitting opposite laugh, I arrived at Charing Cross with plenty of time to spare. JJ introduced me to Leon restaurant, which I shall definitely visit again for the healthy fast food. We finished off with coffee in Waterstone's, an ideal location for writers.

Then it was back home to hear about exploits in Florida and look at the photos. Son 2, having been calm whilst they were away, duly threw a wobbly when he returned from school, though that was aimed at YouTube which was misbehaving, rather than at anyone in particular.

I woke up this morning with a new burst of energy towards my writing, as I so often do after meeting other writers. I've returned to the short story that has made me struggle and although it's still not quite there yet, I'm gradually beating it into submission, while Hubby and Son 1 sleep off their jetlag...

Keep on going

I was searching back through old emails at the weekend, looking for some filed information, when I came across one written to a friend four years ago, almost to the day.

It described what is now believed to have been an early MS relapse, but which I largely ignored back then. It also brought home to me how ill Son 1 was at the time and how naive I was in thinking then that once we had the proper professional input he would get better and back into education quickly. It took so much longer than I ever would have believed and affected my life in so many ways.

In the email I was excited about my OU A215 Creative Writing course, in which I was getting good marks despite everything going on around me. I was full of enthusiastic writing plans for the future...write a novel (tick), do an MA (shelved), use these as a springboard to other things, perhaps teaching.

As I read I realised that some of that early enthusiasm has been drained from me. I've become much more realistic about life, some might even say negative. Don't get me wrong, I'm still enthusiastic about writing, I'm excited about the plans for novel two which are coming together and I know it will be a challenge to write. But all this is tempered by the current state of publishing and media, by the difficulties of breaking in and the urgent need to make even a little money. I also have to take into account my physical need to pace myself nowadays.

But I'm not going to let all that put me off. I'm a persistent person and I usually achieve what I set out to do in the end...

Of summer grumpiness

I was going to write a certain post about language today, but realised it would just make me sound like a grumpy old woman.

So I'm not going to write it. I'll keep my grumpy thoughts to myself. And in my defence the heat is making my legs both wobblier and stiffer (not necessarily at the same time), my eyes need frequent breaks from reading and it's going to be a very long, boring weekend for me.

Hope you all have a good one.

The sunshine state?

It's dark and gloomy here this morning, with spots of rain. As I rubbed the suncream into Son 2's face and arms as usual, I wondered if it would actually be needed today.

Hubby and Son 1, however, will need suncream because they are in Florida. For a week. At least I hope they are, as the last I heard they were in the departure lounge at Gatwick yesterday morning watching the aircraft being repaired...

Son 2 and I are home alone for what is likely to be a long, tiring week for me. Luckily he has school, because I need to rest during the day. I'm not sleeping well and combined with the heat and a possible infection, which is being treated, I'm feeling pretty bleugh.

Son 2 and I don't mind not going to Florida. The climate would probably aggravate my symptoms again and I certainly couldn't walk around theme parks all day. Son 2 has always hated holidays, even in this country. He loves the security of home and gets distressed if the word holiday is even mentioned. He was very unsettled yesterday morning until he realised that he wasn't going with them and he cheered up immensely after they'd driven off, taking their suitcases with them.

We've never taken Son 2 on a plane, he doesn't even have a passport. Perhaps we should have tried it when he was younger, but he was even more aggressive and difficult then, albeit smaller. I've done risk assessments in my head and I still don't think it would be possible. He is too strong, too determined, far too noisy, a nightmare for anyone to have to travel with. He couldn't even be sedated for the journey, as sedatives have the opposite effect on him, as they do with many children on the autistic spectrum. So in many ways it is better to stay within his comfort zone.

This is the second time that Hubby and Son 1 have gone to Orlando together. The first time was just 6 weeks after 9/11 and I was very scared for the whole week. This time I'm much more relaxed. The current trip was promised to Son 1 as part of his recovery from mental illness and they should have gone last year, but with Hubby's business failing and my health issues, it just wasn't possible, so we put the money to one side. It may well be the last 'family' holiday that Son 1 wants to take, so I hope they have fun...

Seizing the moment

I spent most of my twenties trying to travel as much as possible. Having been brought up in a family which never holidayed abroad, my experiences to that point had been limited to a couple of school trips to Europe and two exchange stays in Germany to improve my language skills. So, whenever I eventually did get the opportunity to travel, I had an urgent need to take in as many of the sights as I could, to absorb as much of the culture as was possible in a short stay. No opportunity was ever missed.

When we had a two centre holiday in what is now Croatia and Slovenia, but was then Yugoslavia, one of the excusions offered was a day trip by coach to Venice. It was a long way and only a few hours would be spent in the city. Hubby (who was not yet officially Hubby) had been before and didn't want to do the trip. But I had a gut feeling that it might be my only chance to see Venice so I pushed and pushed, I may even have had a little tantrum. We made the trip, the weather wasn't brilliant, but I saw Venice and I'm so glad I did.

I've been thinking a lot about seizing the moment over the last few weeks and days. Not just because of what is happening to my parents, but also because I heard some sad news at the weekend, which reminded me that we never know how long we've got to be able to do things. It's reinforced the feeling I've had recently that I need to take opportunities whenever they arise, that I want to see more of my friends, that I want to meet more of my online writing pals while I still can, that I want to concentrate solely on writing.

Because nobody ever knows what might lie just around the corner.

A very welcome distraction

As you've probably guessed from the last post, I've got lots of family-related problems to think about and research over the next few months. I'm used to dealing with health and social care services but not those relating to the elderly, so it will be a steep learning curve.

But there's still time to tell you about meeting up with the lovely Helen M Hunt who had invited me to be her guest at the launch of Leigh Russell's latest book, Road Closed last night. We had a pizza beforehand and plenty of time for lots of writerly chat, so it was a very enjoyable evening, which took my mind off the other worries for a while.

Do you believe in karma?

I don't. That's just as well, because if I did I would be seriously worried about what I could have done in a past life to deserve all the bad things that have hit us in the last twelve months.

The latest is a potentially very difficult problem with the ageing parents. Now I know that many people of my age are starting to face such challenges, but let me put it all into context.

I grew up in a small town in a beautiful but very isolated part of the country. We had to travel fifty miles by road to find a large hospital or decent shopping. There were few employment opportunities except farming or seasonal tourism, so it was inevitable that most sixth formers went off to university and never returned. Although my parents moved closer to civilisation on retirement, they are still about 200 miles away from both me and my sister and I only see them briefly once a year. For a number of reasons we don't have a close relationship.

But now they are struggling and they are turning to me (and my sister) for help. The sort of practical help they have never offered to us. Distance and my own circumstances mean that I can offer little day to day assistance, except finding things out and making phone calls if necessary. But I'm already feeling guilty about that, because I think they will be expecting much more. I have noted the comments that they have made in the past about other families in a similar position.

I'm planning a visit in September and will need to be on standby in case a real emergency occurs, but my health and own family have to come first. There is no point suggesting to my parents that they move closer to me, as my mother has always hated London with a passion and anyway they have many friends where they are. They live near to where my father grew up, it is his part of the world. I'm sure they will stay there, by the sea.

And in amongst all this I am slowly losing my mother, at far too young an age, to a cruel disease. Perhaps it is no coincidence that a complicated and difficult mother-daughter relationship is central to my plans for novel two.

College boy

This afternoon Hubby and I went to visit Son 2's new sixth form/further education placement for September. The ethos of the unit won't be entirely new to him, as it is part of the school he has been at for the last five years, but it is located in a separate building in a different area and has its own staff team.

The unit is in a building situated on the edge of a mainstream FE college campus and there are possibilities for a little integration for some students. A focus of the unit is on performance arts ...dance, drama and music...but it also has an IT suite and a fantastic teaching kichen, both of which will probably be much more to Son 2's taste! The students still have some literacy and numeracy lessons and get the opportunity to work towards basic OCR qualifications.

Although the premises are old and somewhat battered, probably inevitable given the autistic client group, we felt that Son 2 should be happy there. The transition will be difficult for him, but the consistent approach and teaching methods should make it easier and it will be a good preparation for adult life.

We are very lucky to have such a specialist placement for him. All we can do now is keep our fingers crossed for September.

The Hive

See that fabulous new widget on the right? It links to The Hive, the new social media game for Like Bees to Honey by the lovely Caroline Smailes.

I was lucky enough to have the chance to be one of the testers of The Hive yesterday, and whilst I am far too much of a techno-numpty to explain how it works, all the details and The Hive itself, can be found here.

Go and have a play, ask a question and create a bee (mine is pink, by the way). And if you haven't read the book yet you really must, it is amazing.

Have fun and I hope to see you in my hive!

Disability benefits and the Budget

Yesterday's Budget has shown that the current Government does not understand the nature of disability or the purpose of Disability Living Allowance. The proposed changes will potentially have a wide ranging impact, especially for families of disabled children and anyone with a hidden disability or one which varies from day to day (such as MS).

DLA is not, and never has been, related to the ability to work, which is covered by Incapacity Benefit (now Employment Support Allowance). Instead DLA might contribute to the cost of special equipment, of having to take taxis, of replacing household items broken by a challenging child. It might help with the cost of a cleaner or occasional carer. The money (and associated Carer's Allowance) might enable a parent to stay at home to care for a disabled child for whom finding childcare would be very difficult. People perhaps assume that all these things are automatically provided by the NHS or Social Services. Well no, they're not, in fact most disabled people don't even have a social worker. The other truth of the matter is that many people who should be entitled to DLA don't even claim, either because they don't know about it or find the form-filling too complex.

I could write a huge blog post on all this, but Anne Wollenberg has already done so in this excellent piece for Comment is Free for the Guardian. Read it, please.

Slowing down

I seem to have hit a slow patch with the writing, where nothing is quite coming together. The words just aren't flowing, even in blog posts.

That may be because I'm very tired and have increasing family concerns on my mind at the moment. It may also be because I'm in something of a limbo, with novel one out on submission and my planning on novel two not yet complete enough for the actual writing to be started.

I've been trying to plug the gap with a short story or two, but am frustrating myself with my inability to make one particular story work. I keep taking a break and coming back to it, but it is still tantalisingly out of my grasp and a deadline is approaching.

So, ever mindful of my need to pace myself nowadays, I'm taking a step back this afternoon and watching Wimbledon...

Through The Barricades

This was one of my favourite songs of the 1980's and I've been listening to it a lot recently. That may, or may not, be writing related...

Pieces of a jigsaw

I was chatting to a friend this morning and she asked what novel two is going to be about. So I started telling her about the settings, the main characters and the backstory and she became very enthusiastic. As I spoke I realised that, although I'm still short on plot detail, I do have the makings of a decent novel there.

I just can't make up my mind whether to plan this one in much more detail than novel one, or whether to start writing and let the characters show me the way. I know from novel one that this might lead to non-productive periods as I wait for the next plot twist and conflict to present itself to me, but I still have some background reading and research to do, so hopefully it will all be clearer then.

I probably just need a few more pieces of the jigsaw to fall into place before I can begin writing seriously...

Peace at last?

Son 2's half term was only two weeks (yes, I know, he gets just four weeks holiday in the summer) but it seemed endless.

It wasn't that he was particularly difficult, in fact he amused himself very well. But he was LOUD. At almost any time of day he would have the television on at one end of the room and his computer playing video clips, noisily and repetitively, at the other end. He wouldn't let us turn either off, he is indeed Mr Control Freak, and he would also 'shout' loudly and nonverbally over the top, especially if anyone was trying to talk.

I used to be able to switch off from all his noise and let it wash over me, but recently I seem to have lost that ability. Even though my desk is upstairs, the sounds are very disturbing if I leave Hubby in charge and try to work. I did escape to the library one day last week but it was full of toddlers and students on exam leave. So in the end I had to accept that the story I am writing was not going to get done during half term and I just got down to some novel research instead.

The difference today is amazing and although I normally take Son 2's first day back at school off to recover, my concentration is rapidly starting to return. Until, that is, the football is switched on and I have to suffer the drone of the vuvuzelas...

While you were gone...

I've had a redesign, after playing around with the new Blogger templates.
What do you think? Please do let me know if you have any problems reading it.

Teaching

Yesterday I spent most of the day teaching at City University in London. Perhaps teaching is really too strong a word, as I'm not professionally qualified in any way to teach. But I, along with two others, spent time talking to a whole year group of student speech and language therapists about our experiences of parenting children with language and communication difficulties and helping them understand how to communicate with parent carers in their professional lives.

I've been doing these occasional sessions for about five years now and find them very enjoyable. Yesterday, as I was recounting some of our experiences to the room, it struck me how much easier it had become. Not just to speak out to so many people, but to discuss the past without getting upset. That, I think, is a measure of how far son 2 has come and perhaps also of my ability to deal with his autism.

The first year students always seem to appreciate our input. We guest speakers arrive after they've already had a short academic session and we then take turns to tell a little of our histories. After lunch the students undertake a fun written exercise in smaller groups and we circulate the room, helping them and enabling them to ask lots more questions if they wish. It works well and the students all seem to enjoy it.

As always, I was impressed by how well the students had taken in the themes under discussion and the intelligence of their questions. There is no doubt that they are all entering their chosen profession with genuine motivation. But there were also fears being expressed privately about the uncertain future of the NHS. There is already a shortage of speech and language therapists in frontline services and the future does not look bright for either therapists or service users.

Although I never had any desire to be a teacher like my father, I really do enjoy my brief forays into higher education teaching. It's fun. Maybe I actually missed my vocation somewhere!

Researching

I was on sole parental duty all weekend, so I used snatched moments to research online for novel two.

Without wanting to give too much away, the novel will be set in two cities, one of which is London and the other is a city in Europe I visited many years ago. I now need to research that city at two very specific points in the last century. It is proving a challenging and fascinating task, since for plot reasons it is critical to get certain things right before I start writing. Today I visited our small local library for more information and I'm also planning a couple of research trips into London at some point.

I didn't have to do so much research for my first novel, as the setting was fictional and the timeline wholly contemporary. But I've always had a strong interest in history, so I'm enjoying researching these elements and look forward to being able to apply creativity to them in due course.

In other news, it's still half term here for another week and I'm teaching in London on Wednesday, so my writing time will be somewhat limited. Normal service (and hopefully more interesting blog posts) will resume properly next week!

Allergic

When I was a kid my best friend used to be allergic to sticking plasters, which was highly inconvenient when first aid was required. I married a man who has a number of food related allergies, including certain types of chocolate and red wine, and on one occasion I had to take him to hospital after a severe reaction. I was always very glad that I didn't have allergies.

Then about ten years ago I developed a nickel allergy, an angry heated rash under my watch strap. I had to buy a new watch with a stainless steel strap, I can now only wear jewellery made in precious metals or steel. But that isn't too hard to live with.

Yesterday, after taking the last tablet of a seven day course of antibiotics for a sinus infection, I came up in a lumpy red rash. I took an antihistamine tablet but the rash remains today. I visited the doctor yesterday evening, who suspects that I may now be allergic to penicillin, however the only way to be certain is to see if I react when given it again.

I don't think I'll be trying that in a hurry. We have had exactly the same question hanging over Son 2 since he was a toddler and I always say he is allergic to penicillin, for safety. I'll now do the same for myself, even though it means I'll be cutting myself off from a whole family of potentially life-saving drugs, and it will be flagged in my medical records. We can't take risks, not just for him but also for me as his main carer.

In the meantime, I'm hoping this irritating rash departs soon.

Internet fail

Our internet connection had been slowing up for a while, a week, perhaps more. Then last Thursday it began to seriously fail. It wasn't that we couldn't get online, we could, but pages weren't loading properly. Some sites, a seemingly random selection, we couldn't access at all. It was all a bit of a disaster.

Of course this threw me into a total panic. Not only did I feel isolated, but I couldn't do the things I needed to do, such as internet banking. Half term was on the horizon and we rely on the internet completely to keep Son 2, a YouTube addict, amused. I couldn't read my emails to confirm he had a couple of days respite this coming week and I was unable to get hold of people by phone. Stressed doesn't even begin to describe how I was feeling.

Luckily I do have a Vodafone mobile internet dongle thing so all was not lost. I eventually discovered I could access my emails via that, but we wouldn't all be able to get online and the costs could potentially be huge if Son 2 had to use it all day during half term. Hubby has been trying to persuade me to cancel the contract when it expires this summer, but this has proven to me that it's a worthwhile investment as a fallback.

In the end we managed to get Son 2 online but the rest of us suffered. I spent an hour on the phone to BT who were polite but didn't solve the problem. They seemed to think it was probably our router (not a BT one) but I was sure it wasn't. They also muttered something about BT Yahoo server maintenance. In the end that is what I think the problem was, as yesterday morning our normal service suddenly came back (fingers crossed).

It's been scary to realise how dependent we are on our computers.

The computer downtime did, however, give me a chance to carry on reading Like Bees to Honey, which I finished yesterday. I'm still trying to process all my thoughts, but what I can say is that Caroline has written an amazing book and one from which I suspect each reader will take a different message. I'll come back to it later in the week.

Time to refocus

I've had a busy week, so gave myself a break from writing. Now that novel one has finally left home, I need to turn my attention back to novel two, which has been forming gradually in my mind for a long time.

I've got many of the elements, the main and some secondary characters, the principal settings, some of the plot elements, but there are still more to find before I can start writing. Novel two, unlike novel one, is also going to need quite a lot of research. Over the past months I have been doing online research at odd times and I have quite a few websites bookmarked for further reading. I also have a few books to read or revisit and a DVD to watch.

A two week half term is about to start, so I think I've got the perfect excuse to escape to the library now and then...

A perfect book launch

It was the London launch party of Like Bees to Honey yesterday and despite a brewing sinus infection I headed happily off to Wood Green, a journey into the centre of London then back out again!

The Big Green Bookshop was full of chattering literary types, some of whom I already knew, some I recognised from Twitter and others I didn't know at all. I managed to speak to quite a few people including a number of Novel Racers, past and present, Sue Guiney and Julia Williams. I only wish there had been time to talk to many more.

Caroline did a beautiful reading and signed many, many copies of the book. There was wine and Cisk beer from Malta. It was a happy, celebratory evening which finished all too soon.

Caroline's own account of last night and her other launch events can be found here and it's fascinating to read about a book launch from the author's point of view.

Believe

I use iGoogle as the homepage on my laptop and amongst my calendar, email and various links and feeds I have a couple of gadgets which provide daily inspirational quotes for writers.

But at the top of the page the words which inspire me most are a constant. Written on a 'sticky note' gadget the first words I see each morning are 'writers...write!'. I've already blogged about the significance of those words here and I can truly say that they motivated me to complete my novel.

This weekend I added another word beneath them.

BELIEVE.

Because that is what I have to do now.

Like Bees to Honey - Chapter 3

I'm honoured and excited to be hosting Chapter 3 of Like Bees to Honey, the new novel by my mentor and friend, the hugely talented Caroline Smailes.

If you haven't already started your journey through this unique literary event, the first excerpt can be found here on Caroline's own blog and the whole novel will be posted around a total of 32 blogs today. Just click on the book to view.

Open publication - Free publishing

Continuing on your way, as you truly must, Chapter 4 is to be found here on Jon Mayhew's blog.

Enjoy.

(You can also buy a traditional copy from Amazon or other booksellers)

The buzz is growing...

Come back tomorrow and all will be revealed...

Getting ready to submit

This weekend I've been doing further research on agents. I'd already spent hours reading the Writers' and Artists' Yearbook and checking out agency websites to find where my book might possibly fit, but this time I was doing something more specific. I was looking at how the agencies which interest me want work submitted.

It's something that is common sense but also very important. We all know we need a synopsis and a covering letter, but beyond that there does seem to be a lot of advice on the web, some of it conflicting. However, every agency has its own specific requirements and we should follow them to the letter. There is no point in failing to do so, or trying to submit a book before it's ready, because we just end up jeopardising a chance with that agency and in the current market nobody can afford to do that.

Just a little heads up that something very exciting is going to be happening on this blog on Thursday and it might just involve my lovely mentor Caroline Smailes. Please check back then...

Ankles and awesomeness

I had to see a physiotherapist at the hospital yesterday. Now I thought I knew our local hospital quite well, both boys were born there and have been inpatients at one time or another, as have I. But yesterday I discovered a whole new area, a long corridor dedicated to adult therapy services, and found myself in a huge gym for an assessment of the ankle pain and spasms I've been suffering. I didn't get any real answers, but as it seems to be getting better on its own I'm not so bothered, and I'm being given exercises to do at home to strengthen my muscles.

Afterwards I popped into the new hospital branch of Costa for a reviving coffee and browsed the magazines and paperbacks in WH Smith before heading for home. It never ceases to amaze me how a large hospital is almost like a small town, with places to eat, things to buy and even a hairdresser. I've probably told you before that allegedly an old lady once dialled 999 to get a lift to a hair appointment there?

Earlier this week I was given the awesomesauce blog award above by Clarissa Draper. I think I'm supposed to pass it on to five of you, but as so many of my readers write awesome blogs, I really can't make a decision. So I'm going to cheat and tell all you awesome bloggers to help yourselves!

May madness

May is promising to be a crazy month, in the nicest possible way.

First there was the election, but that is finished now so let's move rapidly on.Then there are book launches. I have an unprecedented three to attend.

The first, held on Saturday, was a party to mark the launch of Keris Stainton's first novel, Della says:OMG. If you haven't already done so, do read this guest post by Keris as part of her blog tour. I've followed Keris' blog since just before she got her agent, so attending her launch was inspirational.

The party itself, in a pub near charing Cross Station, was great fun. It was lovely to meet up again with Helen, and also to meet several online friends for the first time, including Tamsyn, Claire and Keris herself.

As far as my own novel goes I'm still fine tuning, in preparation for a final paper edit next week. I've got a hospital appointment tomorrow, so will aim to print it out on Friday and start work on it on Monday, when the house is quiet. My synopsis and cover letter are both ready, this is all starting to become very real.

The penalties of early arrival

Eighteen and a half years ago, son 1 was a tiny baby wired up to a bank of machines in neonatal intensive care. We were lucky that he survived, even though at 5lbs 1oz he was one of the biggest babies in the unit.

He received nutrients and medication via drips and later through a tube down his nose into his stomach. A ventilator breathed for him, expanding his lungs to the danger point of bursting. He became part of a medical trial of a lung treatment. He had a cannula on his hand through which blood samples were frequently taken to check on blood gasses, nutrients and medication levels. So much blood was taken that he had to be given a transfusion to replace it. He must have suffered pain and discomfort, despite being sedated.

So I was interested to read this article in The Times this morning about ways such care can have a lifelong impact on premature babies. I can't honestly say whether Son 1's pain threshold has been affected, though it is certainly possible as he does seem to experience certain types of pain intensely. But my eye was also caught by the tiny mention of an increased risk of mental health problems. I haven't yet seen that research and will have to have a look for it one day, because that too makes perfect sense to me.

We were one of the lucky families. Son 1 was only 6 weeks early and has had no serious lasting effects.Or has he? Who knows.

Post-election musing

So we did our civic duty and voted, knowing perhaps that none of the options were what we really wanted. And we are left with one big mess, it appears.

On a local level, I'm happy that our MP was re-elected and control of our local council has changed. I'm also happy that the neighbouring electorate delivered a resounding verdict on one of the worst expenses cheats.

But I fear for the future, for the services that we, our elderly parents and our children will one day need. I fear that son 1, who voted for the first time with such enthusiasm, is already becoming disillusioned.

I have no idea what the solution to the mess will be and I don't think the politicians do either.

Bah! Brilliant Book Bonanza

Our family has been lucky enough to have suffered rarely from cancer. But I lost one of my best friends to breast cancer, I know many others who have suffered, some of whom died. It is a cruel disease.

Last autumn I thought, for just a few weeks, that I might have breast cancer. The NHS swung into action, I was seen at the breast clinic within two weeks, I had all the tests, including a biopsy. A week later I returned for the result. But for those three weeks all I could think was, what will happen if...?

Just a few months I ago I discovered the blog Bah to Cancer and then I started following Stephanie on Twitter. I have been humbled by the courage and honesty of her account of fighting cancer and the charity work she has undertaken.

Her latest initiative is the fabulous Bah! Brilliant Book Bonanza a scheme to raise money for cancer charities through a blog draw for uplifting reading material aimed at those who might be in need of a boost. The books themselves are donated by authors and publishers and the first draw takes place this month.

I love the concept of the power of reading and creative writing in times of need (long term readers may remember that it was a career path I once hoped to pursue myself via a specialist MA) and the Bah! Brilliant Book Bonanza is definitely a project to follow and support.

Everything changes...

Back in 2008 a group of Open University students were swapping book recommendations on an ever changing forum and from that moment the idea of Bookersatz, a blog where the recommendations could be archived in the form of short reviews, was born. I was one of the co-founders and enjoyed editing the blog.

But I am well known for taking on too much and last year, when I was on the final course of my OU degree and diploma and also feeling unwell, Bookersatz became rather neglected. I had no time to chase up or write reviews, my personal reading time was consumed by my studies. I put out a plea for assistance amongst writing friends and lovely Helen M Hunt came to my aid, admirably taking over the editorial functions.

Life has moved on. The OU creative writers who were the original reviewers for the blog have moved on to other things and the focus of the blog has changed slightly. A new group of contributors and readers has come forward. I fully intended to return to a more proactive co-editorial role as my health improved, but real life has got in the way yet again and I have had to make a conscious decision to devote far more time to my own writing.

So, after much agonising, I came to realise that for family reasons I still don't have the time I would wish to devote to Bookersatz. I've formally stood down as co-editor, although I will continue to be involved as an occasional contributor. I've left my baby in Helen's capable hands and I know it will thrive.

Guest post: Keris Stainton

Today, as promised, I'm delighted to welcome Keris Stainton as part of the blog tour celebrating the launch of her first YA novel, Della says:OMG!

Over to Keris:

When Cathy asked me to write about motivation, I happily agreed. And then I started to think. What *is* my motivation? What motivates me? It's not something I've ever really thought about, to be honest. I'm not even 100% convinced what it means, but I was told at university not to start an essay with a dictionary definition (after I'd started an essay with a dictionary definition...) so I'll resist looking it up.

Instead I'm going to look at it like this: what makes me write? What gets me to the computer, opens the document, finds me trying to create characters and put together a plot?

Well good writing does. Reading someone else's good writing, I mean. When I read something like Meg Cabot's The Princess Diaries or Lauren Oliver's Before I Fall or Marian Keyes' The Brightest Star in the Sky it makes me want to write. I know I can't write as well as any of those three authors (yet), but reading their books makes me want to try.

Another thing that makes me want to write is New York. I don't know where it comes from, but I love the place, always have. When I'm there I feel inspired, I feel like anything is possible. I want to write when I'm there and I want to write even when I just think about being there. If I, say, wander around Greenwich Village on Google Streetview, I want to write. So I try to do it just enough to inspire me and not so much that I lose a whole day.

I also find I'm inspired, more and more, by interiors. I don't know if this is a sign of age or of being settled with a husband and children, but Living, etc., magazine is like you-know-what to me. I'm inspired by other people's creativity, but it also makes me want to improve my home, to find or create my dream home. Which leads to...

Money. Yes, I'm motivated by money. I'm not making a lot, but I hope - and intend - to one day. And since I feel like writing is what I'm supposed to be doing in life, I have to assume that writing is where the money's going to come from.

But my main motivation is love. Love of books. Love of reading. Love of writing. Love of that moment when I forget I'm writing and it feels like the story's writing itself. Love of the times when I read my writing back and I think, "Bloody hell. This is pretty good!" But also love for my family. Wanting to support them and provide for them, yes, but also to inspire them. My motivation for giving up work to write was that I didn't want my son to have a mother who was to afraid to follow her dreams. And that motivates me to keep following them.

Thanks Keris! You can find details of all the stops on Keris' blog tour here.

Young Adult heroines

Although it’s currently very hot, I have to admit that I’ve not read much Young Adult fiction and what I have read has been predominantly by crossover authors such as Mark Haddon, J.K. Rowling and Meg Rosoff. I’ve equally never had a desire to write Young Adult fiction myself simply because, despite having teenagers in the house, I don’t think I would be very good at capturing the ever-changing teen voice. So I’ve been fascinated to read two new Young Adult books by my online writer friends Tamsyn Murray and Keris Stainton, to see how they go about it.

Lucy Brown, the heroine of Tamsyn Murray’s My So-Called Afterlife is a ghost. But apart from that she is a typical streetwise London teenager, full of bravado and outer-confidence which masks any insecurities. I see and hear girls like Lucy every time I leave the house and was immediately able to relate to her, despite the supernatural elements of the lively narrative. The story of Lucy’s Emo ghost friend Hep (aka Rosemary) also had particular resonance for me and a difficult subject was skilfully and emotionally handled (it made me cry).

Della, the heroine of Keris Stainton’s Della says:OMG!, is witty like Lucy, yet at the same time she has unwarranted low self esteem. Della is a sweet, innocent character who sometimes seems younger than her years, particularly in comparison with confident best friend Maddy and gorgeous new boyfriend Dan (who I thought seemed very mature for his age). The unfolding of Della’s first romance and sexual relationship is depicted with absolute honesty at the centre of this story, so Della will be a reassuring character for less socially confident older teens.

Two very different characters, but I enjoyed both books very much and suspect it won’t be long before I’m looking for more Young Adult fiction in the library...

Tomorrow Keris Stainton will be visiting here, as part of her blog tour, to tell us more about writing Della says:OMG!
So be sure to call back...

First time politics

Don't worry, I'm not going all party political on you. In fact it's just a quick post as our internet connection isn't good at the moment and often won't let more than one computer online at a time. In fact I'm having to use my mobile broadband dongle (why does that word always make me snigger?) to get online now, as both the boys are home.

But I thought it was worth noting that Son 1, who is eligible to vote for the first time ever, is showing an intelligent interest in the election. As Son 1 is not a great reader (I know, I know, we tried our best), the reason for this is, I'm sure, the televised leaders' debates. Son 1 has watched them with us. He has been intelligent enough to form his own views and independently remarked on last Friday morning's biased print media response to the previous night's debate.

If he has become this engaged by the TV debates I wonder how many of the other young first-time voters have done the same and what difference, if any, this will make?

Rowan Coleman's Short Story Competition

Lovely Novel Racer and talented author Rowan Coleman has just launched a short story competion for writers without an agent or publishing contract to submit a 1000 word story on the theme of 'Starting Over'. There are some fabulous prizes up for grabs so it's well worth looking at.

Full details can be found here on Rowan's blog.

Head down working

I got my edit back from Caroline at the end of last week, so I am now going through the whole novel, once again tweaking and expanding. It was a relief that no major surgery was needed and I hope to be finished with the edits by the end of this week (I've had today off, as I was meeting friends). Then there are just the synopsis and query letter to complete...

This morning my friends asked me about progress and I told them I was not too far away from being able to start sending it out to agents. They then asked what I would do next and looked horrified when I said I would probably start writing another novel...

Ashes to ashes

Watching and reading reports about the travel chaos caused by the cloud of volcanic ash from Iceland, I have been forcibly reminded why we just don't travel with Son 2 nowadays.

I used to love to travel. I've even lived abroad for a while. But anyone who travels regularly will know that from time to time difficulties will be encountered in the form of delays, breakdowns, missed connections or even, as in this case, a totally unpredictable 'act of God'.

Over the years I've had my own share of travel difficulties. A missed connection in Germany while travelling alone at the age of 17 necessitated spending hours on Cologne station in the dead of night. A broken-down plane enforced an extra 24 hours in Hong Kong when all hotels were fully booked and the airline tried to book us into a brothel. A delayed ferry meant ultimately spending an uncomfortable night on Victoria Coach Station. And of course there have been many more frustrations in the form of traffic jams and vehicle breakdowns.

But Son 2 couldn't cope with any of that. Like many people with autism he needs life to be totally predictable, because he has a constant high level of anxiety. There is nothing he loves better than the security of home and he just doesn't 'do' holidays. If he is stressed and unhappy, we are stressed.

For years we did go on holiday, because we are lucky enough to have family living by the sea in a beautiful part of the country. But for the last few years staying in that sort of 'home from home' has not been possible, so we have stayed here.

Of course, not all people with autism are like Son 2 and I have friends who do travel successfully with their autistic offspring. But trips have to be planned like a military operation and recent events have left me wondering how they would cope if stranded abroad by a flight ban, or cooped up in a stalled Eurostar train for hours on end.

Perhaps I am being overly negative in worrying about such things. But I used to return from even our straightforward trips with Son 2 feeling mentally and physically ill from the stress of trying to prevent him doing damage or escaping the building. It was never, ever a holiday for me.

A writing heroine

I think I've probably mentioned before that I love Maggie O'Farrell's work. She writes exactly the sort of fiction I aspire to create myself, namely complex, intelligent, beautifully written and commercially successful books.

So I'm excited that she has a new novel, The Hand That First Held Mine, due out later this month. It will certainly go straight onto my wish list. In the meantime I can whet my appetite with the beautiful book trailer:

What a difference sunshine makes...

We all know that warm, sunny weather lifts our spirits. But in my case it seems to give my muscles a boost too.

I've written before about how I've been suffering very painful spasms in one leg for close to three months now. I've always suspected that the onset of this annoying symptom was related to the exceptionally cold weather we had in January and medical opinion has confirmed that it could indeed be the case. Over the last week or so, as the weather gradually got warmer, the pain has receded. It's not gone completely, but I finally feel that it eventually will, which is a huge relief.

On Saturday I went into town and was able to walk around much more freely than I have since the onset. Just to prove it wasn't a fluke, I was able to do the same yesterday. I will have to build my activity up slowly, as fatigue may also be a factor, but I no longer feel scared that the intense pain could prove to be permanent. I've also found that just using a simple tubi-grip elastic support on the ankle (around which the pain now locates itself) is a huge help and I regret not having thought of that before. I'm to be referred for a proper specialist physiotherapy assessment, so when that it happens it will be interesting to see if they have any further ideas.

The end of the school holiday has also brought a return to my novel. Over Easter I wrote one short story, but didn't look at the novel at all. Now I can no longer put off writing the dreaded synopsis and I've made a start this morning...

Frankie Boyle - social media strikes again

I've held back from blogging about this for a few days, because it's a subject upon which I know that, due to my family circumstances, I might not always be objective. But having given it thought over the weekend, I'm now sure about where I stand.

On Thursday morning I logged into my Twitter feed to find that a blog post was being retweeted. I duly read the post and was horrified.

We have watched Mock the Week for a long time and I'm well aware of Frankie Boyle's humour. He is the sort of comedian who takes his material right to the boundary of bad taste and often beyond it. Sometimes he makes me laugh a lot, but just as often he makes me squirm in discomfort. So I wasn't really surprised to read that he thinks that making a string of jokes about people with Down's Syndrome is acceptable. That laughing about people who will almost certainly neither understand the jokes or be able to fight back is acceptable. To me it is definitely not.

But perhaps what shocked me most of all was the way he treated the blogger and her husband, the fact that he said he didn't 'give a f*ck' that his material had upset her, even after she had calmly explained why.

The power of Twitter worked, as it did in the case of Jan Moir's remarks about Stephen Gately. The story was soon picked up by the mainstream media. India Knight wrote an excellent column in yesterday's Sunday Times. A blogger who just wanted to make sense of a confusing situation was plummeted into a media whirl she neither wanted nor expected. But hopefully it has made at least a few people think.

I wonder if Frankie Boyle gives a f*ck now?

Randomness

A mish-mash of news and random things today.

Firstly and most importantly, I completely forgot to blog about World Autism Awareness Day, which was a whole week ago. If you are interested in finding out more, the UK website is here.

We're all currently a bit under the weather with cough and cold viruses. However, a nice man has removed the virus from Hubby's laptop for a very reasonable fee.

Tesco decided that macaroni cheese was a good substitute for Chinese crispy fried duck in our order today. Why? The macaroni cheese was sent straight back. To be fair, we usually do get fairly sensible substitutions, this was just one of the most random ones we've ever received. But home delivery is such a blessing during school holidays when it is almost impossible to get to a store.

Finally, I now appear to have been married for 22 years. How on earth can that be?

School holiday, week two

This hasn't been a very productive holiday so far. Last week I regularly decamped to Starbucks or the library to escape the noisy chaos at home. I had good intentions of writing, but none actually got done, although I did read a lot and plan a little. I also learnt a lesson about how much I can do at present without exhaustion setting in.

I have subsequently written a womag-style short story from one of those ideas, which I'm quite pleased with, although it still needs some tweaking. I've also been investigating a future direction I might want to explore with my writing.

Actually, perhaps I have done more than I realised...

Our Easter so far...

Coughing. All of us, but particularly Son 1, who I sent to the emergency doctor on Saturday morning as he sounded so bad.

Chocolate. Though not as much as usual, we've cut down this year.

Coffee. Too much.

Computers. Hubby has managed to get a nasty worm or virus on his new laptop which will need professional attention. I then spent ages ensuring my own machine was thoroughly scanned for nasties.

Dr Who. First impressions of the mad new Doctor were good. Potentially great chemistry with the feisty new assistant and some fabulous one-liners in Steven Moffatt's script.

Sleep. After rushing around possibly a little too much last week, I spent the whole of Easter Sunday afternoon asleep. Of course my daily 5.20am starts with Son 2 haven't helped either.

Writing. None actually, I've been too tired to form words into logical sentences. But I have been doing some more research for the next novel and thinking up some more potential themes for short stories. All I need to do now is sit down and write them.

What writers really earn

So we all know we're not in this for the money, right?

I was interested in this blog post by Gary Smailes of Bubblecow, showing that according to published data the typical (median) annual earnings of a writer is £4000.

That figure struck me particularly because back in 1982, when I left university and started training as a Chartered Accountant, my initial salary in outer London was exactly that, £4000. Even then it wasn't enough for a single person to live on and I only survived because the bank gave me an overdraft, presumably on the basis of future earnings.

Mind you, at the moment even £4000 would be very welcome and actually compares favourably to what the government thinks carers are worth (£2761 in 2009-10 for 35 hrs+ of care a week). It seems that both writers and carers should be working for satisfaction rather than a living wage. Perhaps I really should go back to accountancy.

Competitions

I've been wondering whether I should enter a few more writing competitions. I have to say I have a love/hate relationship with the idea and up to now have entered only a handful, one of which was the Bridport Prize (well I can dream, can't I?).

I think for me a competition needs to have a prize element which might enhance my writing CV, eg publication in a reputable magazine or in an anthology published by a good indie publisher, or simply be a 'big name' competition. Entry fees to competitions can mount up, particularly important in our current difficult financial circumstances, and for me entering lots of smaller competitions would just be a financial lottery. You might be lucky enough to win a small cash prize, but would you ever recoup the total outgoings?

Sally Quilford is the queen of all things to do with competitions in the UK and I regularly take a look at her useful competitions calendar. I was also interested to see that she is the judge in the current Slingink Prize competition and to read her views on what might catch her eye as a judge. I'm not sure whether I felt encouraged or put off by reading so much detail, including her dislikes (sorry, Sally).

Personally, I think that trying to tailor an entry for a named judge can be quite difficult and take away from a writer's natural style. After all, a judge doesn't want to see a clone of their own writing and may enjoy reading many other types of story, a point made here by Tania Hershman a judge on the Bristol Short Story Prize this year and by Sally Quilford herself.

I have to admit that all my own competition entries so far have been either work rushed out at the last minute, just before the deadline, or pieces already written during my Open University creative writing courses. I've not put too much agonised thought into them. I'm not sure if that is a good thing or not, but I have had some success. So if I carry on entering competitions, I suspect I will continue in the same haphazard way...

School holiday escapes

Son 2's Easter holiday has just begun, so for the next two weeks (and one day) the house will be noisy, messy and generally chaotic. Although my desk is upstairs and Son 2 prefers to be downstairs, I still find it difficult to concentrate on any work.

So this holiday I'm taking advantage of the fact that Hubby is home and I'm going to take my writing out. Sadly there is no nice coffee shop in walking distance of our house, but the small local library is less than ten minutes on foot. Just a short bus journey or one stop on the tube, in either direction, can be found coffee and shopping, so I'm spoilt for choice.

Today I had a browse around five charity shops, picking up some kids and young adult fiction in an attempt to further broaden my reading (it's a while since I had to read children's books out loud). Then I retreated to Starbucks where I read and drafted some ideas and themes for future short stories over two mugs of coffee, only returning home when I felt caffeined out.

I'm hoping to repeat this later in the week, but tomorrow I might try working in the library...

Gone

As you all know I've been editing the novel on and off for about two months. Although I think it's about as good as I can get it on my own, every time I open the document I find something else tiny which needs tweaking.

But you can't go on like that for ever. Yesterday Hubby told me it was time I let it go and as it happens today was the date I'd agreed to get it to my lovely mentor Caroline for her final edit. It's gone.

So now I'm going to begin drafting my synopsis and query letter (though possibly not during the school holiday, which is about to start) and prepare myself for another round of edits when the novel returns.

And in the meantime my head is buzzing with ideas for future writing projects, which I need to pin down and prioritise...

Lesley who?

I was sorry to read last weekend of the death of Lesley Duncan. Lesley who? Well, she was singer/songwriter and session singer with a beautiful voice, who recorded the vocals to one of my favourite songs ever, If I Could Change Your Mind by The Alan Parsons Project.

It's really old now, but this song is one I consider to be part of the soundtrack of my life. It saw me through the end of a serious relationship, the words just seemed to express everything I was feeling at the time. I still like listen to it and now Son 2 seems to enjoy it too.

The Future of Publishing

You've probably all seen this clip already as it's been doing the rounds of blogs and Twitter ( I first discovered it via Nicola Morgan), but I thought I'd put it up anyway, simply because I love it.



For anyone who might be unfamiliar, you MUST watch the clip right to the end to understand it properly. It's very clever.

Living life to the full

Whether you agree or not with the legal and moral issues for which she has been fighting, Debbie Purdy is an inspiration (as is her husband Omar Puente). Whenever I read about the couple I am struck by how their positivity is enabling her to live life to the maximum for as long as she can, as this article so clearly shows.

I'm just not sure whether I'm yet ready to read her forthcoming autobiography. Maybe I'll buy a copy and put it away until I'm a little further down the line, perhaps to be pulled off the shelf if my own well of positivity starts to run dry.

For me, at the moment, it is far more important to remember the words of my GP that there are very many people living with MS who are much more mildly affected than Debbie Purdy (or Jacqueline du Pre for older readers). I'm currently lucky enough to be at that mild end, I don't have the same concerns as Debbie Purdy. I hope I never will.

Sleep deprivation

I'm feeling exhausted. Son 2 has decided that it is cool to get up between 5 and 5.30am, almost every day. A recent lie in to 6.30 was a luxury.

We don't know what wakes him. A neighbour does drive off in a van at a ridiculously early hour, but that is around 4am. I sometimes stir and hear the vehicle but go straight back to sleep. Does that disturb Son 2 as well?

Because he can't be left unattended I have to get up too. Now strangely at Christmas, when he was sleeping better, I went through a phase of waking at 5am myself. I had a huge burst of creative energy and wrote a significant chunk of my novel on those mornings, before anyone else rose for the day.

But now I'm too tired to contemplate early morning writing. I just crave a shot of caffeine, not least to damp down the muscle spasm I usually have on waking. And I need to find something even more effective to cover my dark shadows.

Mothers

So, on Saturday afternoon I was to be found sitting in a coffee shop, nursing a large black Americano and reading two great short stories by my lovely friend Helen in the latest issue of Woman's Weekly Fiction Special. Then I started to draw a spider diagram of some of my rough ideas for novel two and a few new developments emerged, which was pleasing.

That led me on to thinking about Mother's Day (which was yesterday in the UK) and whether either of our mothers, who both now have some level of dementia, would appreciate the cards we'd sent. Actually they both did...one has already rung twice to thank us and the other also remembered to say thank you after a prompt about what day it was yesterday.

Then I moved on to thinking about mother-daughter relationships and how important they are in creating self-esteem and helping girls learn to function as women. Sadly, in our generation, there isn't a healthy mother-daughter relationship on either side of the family and it's something I'd always hoped to remedy if I had a daughter. But I don't. So that led to lots of 'what ifs' and...well, that's what writers do, isn't it?

A day off

Today started really badly. There was an argument in the street because a rather selfish driver was blocking our road, preventing son 2's special needs school bus getting to the house, and she refused to move. Then I overheated some cooking oil, almost setting the house on fire in the process.

I've decided to give myself a day off, a whole day away from the writing. I'd already got a lunch date arranged with an old friend and she will be collecting me very soon.

So I'll leave you with what I have finally realised is the theme tune to my novel:

Making a difference

It's only the middle of the week, but already there have been a couple of occasions where I have spoken to people and what I have said has made a real difference or will hopefully do so. I find that hugely satisfying. I get so much help and advice from others, it's lovely to be able to give back sometimes.

Other things have fallen into place too. I have my first appointment with the MS nurse booked for a day in April. When I agreed the date I hadn't realised that Son 2 would still be on holiday. Nor had I realised that it would be a home visit rather than a clinic appointment. So when I got the confirmation letter last week I must admit I panicked a little.

I could, of course, have changed the date. But I've waiting to see the nurse since my diagnosis last summer, as she had just gone on maternity leave then and has only now returned. She will be the pivotal health professional in my future care and I am already needing her advice, so I didn't want to postpone.

Luckily I have managed to book Son 2 into a playscheme for that day, so I should be able to have a calm appointment where I can think and talk with a clear head as she assesses my needs. Hopefully it will be the start of a relationship that will make a difference.

Too old to be published?

There's an interesting debate on Nicola Morgan's blog today about the difficulties that older writers might face trying to land an agent or a publishing contract in today's market.

For me it made depressing reading because, if it is correct, both my age and my recent diagnosis will put me at a significant disadvantage. Obviously I don't need to disclose my age (and I am told I look younger anyway), but my MS will most likely be evident to anyone I might meet, as I now usually walk painfully slowly, often with a stick.

But then I looked at it another way. I have had so many life experiences, in a professional career, as a mother and a carer. Elements of all of these have fed into my novel. In other words, I couldn't have written the book I have just finished when I was much younger. Neither could I have done the OU distance creative writing courses, which built my confidence enough to attempt a novel, when my boys were very small ( apart from anything else they didn't exist then).

I've been writing seriously for five years. My writing has come a long way in that time and will no doubt continue to improve. I have been published, with my work having been selected for anthologies by writers I admire. The potential must be there and, unlike many other jobs, there is no need to retire from writing at a particular age. I have many, many writing years ahead of me and due to changes in family circumstances I now have more time to devote to writing than I ever did before.

I just hope that when I start to submit my novel in the next few months, agents and publishers will be able to look beyond such prejudices. So how can I sell my ability not only to write but to promote my work? Well I blog. I'm on Twitter and Facebook. I network with other writers. I live in London, not the middle of nowhere which could be more restricting while I can't drive. For the first time in 18 years I am not the sole carer in the family, which gives me much more flexibility. Perhaps most of all I now have more hunger to get it right and have been willing to invest time and money to do so. Finally, I write Women's Fiction which I hope would appeal to women across a wide age range rather than a narrow demographic.

Would all that convince you?

Adult Autism Strategy

Following on from the passing of the Autism Act in 2009 the Government has now published its Adult Autism Strategy for England. I haven't yet read it, but this is the take of the National Autistic Society.

One of things that amazes me is that over the years no one has kept accurate records of how many adults have autism. This has obviously been affected by the fact that diagnostic procedures have improved and many people are diagnosed in adult life. But given that the diagnosis rate in children is 1 in 100, according to the National Autistic Society, there must be a lot of adults with autism out there, most of whom are not getting appropriate services. Anything which recognises this and makes progress towards increasing support has to be welcomed. But nothing is going to happen quickly, and current budget restraints will no doubt slow the processes up even further.

One of the biggest difficulties is there can be no 'one size fits all' solution. People on the autistic spectrum can range from profoundly disabled to university professors, with most slotting in somewhere inbetween. Have a look at Temple Grandin's TED talk on autism for a wonderful view of autism from a high functioning autistic adult. But remember that for every Temple Grandin there is also an adult who can't communicate and needs 24 hour support.

On and on...

I'm still editing. It's slow, painstaking work largely involving small tweaks and the moving of commas. I make changes and then the next day change them back again. Some days I read my work and think it's not too bad, the next day I hate it.

I know I've got to take my time on this edit, to get the novel into the best shape I possibly can. But it's causing far more self-doubt than even the actual writing did, and that at times was like pulling teeth. Some days the right words come, sometimes I can't think of even simple expressions. I don't know if this a side effect of my MS or just a deficiency in my writing skills.

To cheer myself up I've been researching agents to whom I might wish to submit. But if I feel like this about the novel now, how on earth will I be when it is launched out into the world on its own?

Thaw Blogsplash

Ruth's diary is the new novel by Fiona Robyn, called Thaw. She has decided to blog the novel in its entirety over the next few months, so you can read it for free.

Ruth's first entry is below, and you can continue reading tomorrow here.

*

These hands are ninety-three years old. They belong to Charlotte Marie Bradley Miller. She was so frail that her grand-daughter had to carry her onto the set to take this photo. It’s a close-up. Her emaciated arms emerge from the top corners of the photo and the background is black, maybe velvet, as if we’re being protected from seeing the strings. One wrist rests on the other, and her fingers hang loose, close together, a pair of folded wings. And you can see her insides.

The bones of her knuckles bulge out of the skin, which sags like plastic that has melted in the sun and is dripping off her, wrinkling and folding. Her veins look as though they’re stuck to the outside of her hands. They’re a colour that’s difficult to describe: blue, but also silver, green; her blood runs through them, close to the surface. The book says she died shortly after they took this picture. Did she even get to see it? Maybe it was the last beautiful thing she left in the world.

I’m trying to decide whether or not I want to carry on living. I’m giving myself three months of this journal to decide. You might think that sounds melodramatic, but I don’t think I’m alone in wondering whether it’s all worth it. I’ve seen the look in people’s eyes. Stiff suits travelling to work, morning after morning, on the cramped and humid tube. Tarted-up girls and gangs of boys reeking of aftershave, reeling on the pavements on a Friday night, trying to mop up the dreariness of their week with one desperate, fake-happy night. I’ve heard the weary grief in my dad’s voice.

So where do I start with all this? What do you want to know about me? I’m Ruth White, thirty-two years old, going on a hundred. I live alone with no boyfriend and no cat in a tiny flat in central London. In fact, I had a non-relationship with a man at work, Dan, for seven years. I’m sitting in my bedroom-cum-living room right now, looking up every so often at the thin rain slanting across a flat grey sky. I work in a city hospital lab as a microbiologist. My dad is an accountant and lives with his sensible second wife Julie, in a sensible second home. Mother finished dying when I was fourteen, three years after her first diagnosis. What else? What else is there?

Charlotte Marie Bradley Miller. I looked at her hands for twelve minutes. It was odd describing what I was seeing in words. Usually the picture just sits inside my head and I swish it around like tasting wine. I have huge books all over my flat; books you have to take in both hands to lift. I’ve had the photo habit for years. Mother bought me my first book, black and white landscapes by Ansel Adams. When she got really ill, I used to take it to bed with me and look at it for hours, concentrating on the huge trees, the still water, the never-ending skies. I suppose it helped me think about something other than what was happening. I learned to focus on one photo at a time rather than flicking from scene to scene in search of something to hold me. If I concentrate, then everything stands still. Although I use them to escape the world, I also think they bring me closer to it. I’ve still got that book. When I take it out, I handle the pages as though they might flake into dust.

Mother used to write a journal. When I was small, I sat by her bed in the early mornings on a hard chair and looked at her face as her pen spat out sentences in short bursts. I imagined what she might have been writing about; princesses dressed in star-patterned silk, talking horses, adventures with pirates. More likely she was writing about what she was going to cook for dinner and how irritating Dad’s snoring was.

I’ve always wanted to write my own journal, and this is my chance. Maybe my last chance. The idea is that every night for three months, I’ll take one of these heavy sheets of pure white paper, rough under my fingertips, and fill it up on both sides. If my suicide note is nearly a hundred pages long, then no-one can accuse me of not thinking it through. No-one can say; ‘It makes no sense; she was a polite, cheerful girl, had everything to live for’, before adding that I did keep myself to myself. It’ll all be here. I’m using a silver fountain pen with purple ink. A bit flamboyant for me, I know. I need these idiosyncratic rituals; they hold things in place. Like the way I make tea, squeezing the tea-bag three times, the exact amount of milk, seven stirs. My writing is small and neat; I’m striping the paper. I’m near the bottom of the page now. Only ninety-one more days to go before I’m allowed to make my decision. That’s it for today. It’s begun.

Continue reading tomorrow here...

Taking pleasure in small things

This week my lovely mentor Caroline blogged about why she gets so excited about 'little' things. I'm not going to paraphrase her moving words, if you haven't read the post and the lovely comments that followed then please do.

And it got me thinking. As parents of children with special needs, we too have to learn to celebrate the smallest of things. Son 2 should now be approaching his GCSE exams, yet as we sat in a meeting at his school yesterday, we were asked to celebrate the fact that, just occasionally, the teacher can get him to focus on a task for up to 30 minutes. He should be planning for sixth form and university, instead it was hinted that due to his lack of engagement he may not qualify for short term funding at a residential college when he leaves school, something on which I had been planning.

But hey, you know it's fine. Because ever since he was one we have had to adjust our expectations. We have learnt to take pleasure in his small successes. Every year he does make progress, even if it is entirely on his own terms. Before the meeting he had filled in a sheet, by selecting and sticking symbols, to tell us all what he likes at school and wants to do next year. He enjoys ICT and Food Technology. He wants to do yoga. All of this made perfect sense to us, they were clearly his own choices.

So at the end of the meeting we came out celebrating the fact that in his almost five years at that school he has made lots of progress. He might not, through his own choice, shine at English and Maths, but he is learning life skills which for him are far more important. As the formal part of his education draws to a close the school will be focusing more on getting him doing fun things in the community, something which he often finds rather scary.

We will all, school staff and family, continue to celebrate his every small achievement. It's something that perhaps only those parents who have been there can truly understand.

A visitor

The visit from the Department of Work and Pensions took place this afternoon and was relatively painless. The lady took one look at Son 2 and agreed that his disability benefit can continue to be paid into my bank account, no additional legal documentation is needed. I hope the transition will be painless and that they won't stop the next payment (due after his birthday) as the result of technicalities.

She also discussed what other benefits we might be eligible for since Hubby's redundancy, but I think we are already claiming everything we are entitled to, having already taken advice.

In other news, I am now going down with the dreaded cold, the last member of the family to succumb. I had really hoped I would escape it. And tomorrow Son 2 returns to school. Hooray!

Short but sweet

It's still half term for Son 2, who has a rotten cold, so I have little time to blog. But I just need to mention how much I loved these writing tips from the Guardian this weekend (don't forget part two here.)

Lots of common sense from successful writers there.

Sixteen

In the midst of all my editing and lots of other things going on, it almost escaped me that Son 2's birthday was rapidly approaching. In a couple of weeks he will be 16.

That will bring all kinds of changes. For a start the Department of Work and Pensions wants to know whether he can in future manage his own disability benefits. Well doh. He doesn't speak, read or write his own name. The answer is no. So next week they want to visit to check this out for themselves ( because obviously we are not to be trusted to act in his interests) and he has to be here. On what should have been his first day back at school.

This seems like last minute stuff, but to be fair to the DWP a meeting was originally arranged before Christmas but I had to cancel, as it turned out to be on the same day I needed to be at the hospital to find out if I had breast cancer (for new readers, I don't).

Later next week we have the annual review meeting at Son 2's school where no doubt his future will also be discussed. In September he will move up to the post-16 unit on a different site where he can stay until he is 19. With all the economic and political uncertainty in this country, it currently seems impossible to think much beyond that, but we will have to start.

Then yesterday I realised that he will most probably lose his regular holiday respite at a special needs playscheme, as he will be too old. That will be a huge gap to fill and I'm not at all sure there is anything suitable to replace it. We currently don't have a social worker but I think we might just need one now, though how much use one would be is debatable.

There are probably going to be a lot of changes for Son 2 this year and I just don't know how he will cope. Like many people with autism, he just doesn't do change. We may be in for a rocky ride.

Perfectionism

Yesterday I finished my first run through of the book. I've actually made quite a few changes. No major surgery, but lots of little tweaks and I know there will be many more to come. I've spotted a few inconsistencies, mainly caused by me fiddling a little with my original planned timeline part way through the first draft. I've tried to enhance the language a little.

All that has led to yet another major crisis of confidence. These seem to be happening roughly weekly at the moment, as I read through what I've written and think it's rubbish. Maybe that's one of the downsides of having studied creative writing, you actually have a good idea of what you are trying to achieve, even if you can't always put it into practice. Maybe it makes me too perfectionist.

Can you be too too perfectionist? I think possibly you can, because it can prevent you ever letting go of your work and sending it out into the big wide world. On the other hand, I keep telling myself this story has been a long time in the making, it is one which is intensely personal and I only have one shot with it. It deserves to be the best I can make it and that is a huge responsibility.

This morning I received a link to this article on editing, which I think I shall use in my next run through. It encapsulates so many of the things I already knew, all on one easy to check page.

So, today it will be back to the beginning. Eek.

Taking a break

No, not from here!

But I did take a break from my editing over the weekend. Partly because I had lots of other things to do, but also partly because I felt I needed to get a little distance from the novel. I've been making very good progress on this first run through, but that does mean I'm now editing sections I've written more recently, since I was ill last summer, so I've only had three or four months break from them. That should be enough, but is it?

My writing style changed a little as the novel progressed. I think in the early stages I was conscious of an OU tutor sitting on my shoulder and as a result the writing came out a little self conscious, over-written even. I hope that the tweaks I've made, initially after Caroline's edits and now in this full edit will improve the balance between the two halves of the book.

But I won't know until I get to the end.

Still

Yesterday I walked into a shop and this was playing. I had to just stand and listen until it had finished. So many memories - still.

(I love this longer album version)

Changes

It's been a strange week so far.

A meeting on Monday signalled the beginning of the end of something I've been involved with for 10 years, something I've worked at for love rather than money. I'm afraid I can't be more specific, but while I know that what is happening is for the best and was partially my own idea, the change inevitably brings sadness.

Added to that I have been hit hard with the realisation that I need to try to make a little money from my writing. Up to now I have only submitted very selectively on an occasional basis and mostly to non-paying markets, but once my novel editing is complete I really need to start trying to write for paying markets. In our current position every little bit of extra cash would help.

Just to add further to the joy I am suddenly feeling very fatigued today. Now this probably has something to do with the fact that Son 2 has got me out of bed between 5 and 6am every morning since Christmas, as some of my Twitter friends may have noticed. But severe fatigue is also a symptom of MS, so I'm keeping my fingers crossed that it's just something an early night might help, rather than another new symptom to add to the leg spasms.

I'm just hoping that Friday won't bring any further changes...

Editing the novel

I'm well into my edits now. It's going to take a while, but I'm pleased with progress so far.

I have to admit that I enjoy editing. It is something that was drummed into us on the Open University creative writing courses and I do find the process of revision satisfying. Tweaking a sentence to make it flow better or replacing a single word with something even more suitable can be just as creative as getting the words down in the first place.

So I'm back at the beginning of the novel, working through chapters I wrote some time ago and can barely remember. I've had some pleasant surprises as well as finding parts which are not so good. For me the process of editing usually involves adding in more detail, so I'm inserting little flashes of description or dialogue. I have even, shock horror, deleted a whole paragraph which didn't quite fit.

This is a first run through to improve the flow of the language and boost the characterisation. Then I plan to start all over again to look at the timeline, plot and structure before going back to the language again.

So far, so good.

The mysteries of MS - 3

The leg spasms have not gone away, so on Monday I decided it was time to report them to the GP. My appointment was yesterday. As I thought, there is nothing much she could offer to help, other than advice to keep moving and stretching the leg, and to carry on as I have been with heat pads and hot drinks, which do help.

Any treatment plan is in the hands of my neurologist, who I'm not due to see again until June. The GP didn't feel the new symptom warranted bringing forward that appointment, which is, of course, good news. At present the consultant's plan is just to deal with individual symptoms if necessary as they arise.

The thing is that although there are some treatments to alleviate MS symptoms they are apparently not very pleasant. Even the first option, in the case of a big relapse, would be high dose steroids. I'm keen to remain unmedicated for as long as I
can and to just be careful with diet and exercise and look after myself to the best of my ability that way.

Then there is another mystery. It appears that there is a possibility that my MS may not be MS at all, but another disorder masquerading as MS.

I had a slightly abnormal blood test last summer, which the neuro wasn't too excited about. It was repeated in December but I've not yet heard the result. This may mean that it was normal or more likely the hospital have lost the results or screwed up the test yet again.

If the result of the first test is replicated then apparently the abnormality could be at least partially causing my MS symptoms. Or something like that. As the GP says nobody really knows what MS is or what causes it. It could be a number of underlying issues which all produce similar outcomes.

My MRI scan and other symptoms were certainly indicative of a diagnosis of MS, the brain lesions were clear on the scan. I suspect that if the blood irregularity does prove to be part of the cause, then the overall diagnosis won't change but maybe the treatment plan will. Haematologists will probably become involved as well as the neurologist and the MS nurse who I am due to see for the first time in April.

It's just a game of wait and see.

My celebrity lookalike

You know that celebrity doppelganger thing that is going around Facebook this week? Well I can't be bothered to change my picture there so I thought I'd put mine on here instead, for posterity.

Yes it's Sigourney Weaver, more specifically, Sigourney Weaver as she was in the late 1980's (think Gorillas in the Mist and Working Girl).

Now it is a little known fact that Hubby has always had a thing about Sigourney Weaver. So guess when we got married? Yep, 1988.

Shame that it didn't work both ways, I'd have loved to marry a George Clooney (or back then Harrison Ford) look alike...