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...