My first assignment for the OU Advanced Creative Writing course was duly despatched last night. After spending time on the novel and other small bits and pieces it was weird having to write to length and to a deadline again, but I'm sure I'll get used to it. Tomorrow is a writing workshop, the first of two on the course and a chance to meet our tutor, so I'll be off into London for the day, a welcome break after a very stressful half term.
I have been inspired and encouraged by Calistro's recent wonderful news, and now that the assignment is out the way it will be back to the novel next week.
Three notable things:
1. Snow on our cars yesterday morning, almost unknown in October.
2. Our little neighbour was thrilled with the Maltesers we gave him for Trick or Treating this evening.
3. Son 1's discharge is being planned due to the fantastic progress he has made in recent weeks.
Friday, October 31, 2008
Thursday, October 30, 2008
Potentially controversial
A fierce debate on an internet forum yesterday has left me feeling quite shaky about the way the world views young people like son 2.
It is a fact of life that older people with learning difficulties can display behaviours which might be considered cute or quirky in a younger child, but are perceived as threatening in a bigger person. It is something that every carer is painfully aware of and the reason why every trip outside is planned with military precision and a view to risk assessment, including potential risk to the public. Nothing in our life can be spontaneous.
But a lot of our young people can be friendly in a way which is not age appropriate. I'm not talking about sexual here, that is a different matter altogether and should never be tolerated. But son 2 might suddenly stretch out a hand to gently stroke someone's arm for example. It his way of showing friendship and is the reflex reaction of a small child. Son 2 might be 14 but he has the cognitive function of a four year old and the social awareness of less than a two year old. I try always to be aware of this possibility, but if I am on my own with him I can't be standing on both sides to prevent it. He is also over 9 stone and too strong for me to physically move him away, as I could when he was smaller and before I wrecked my back doing so. On the rare occasions it happens, we firmly tell him no, apologise profusely and explain he is autistic. I have never yet met a negative reaction from the public if I do this.
Now of course we all understand about personal space and indeed son 2's school have done a lot of work with him on that very subject. But to find some people on a special needs forum stating that they would consider such a gentle touch to be assault, has rocked me to my core. It has made me question whether I should take son 2 out at all on my own, yet often there is no choice and our rare trips out together are limited to very familiar places anyway. Of course I appreciate there are two sides to every story, I do understand that other people don't want to be touched. I certainly do not condone such behaviour and do my best to prevent it, but it would seem that for some people that is not good enough.
Yesterday, after reading the forum I collected him from playscheme. In order to do so I had to park in the neighbouring supermarket car park and walking him back through, I found myself struggling not only with the usual worry of keeping him away from cars, but now from people as well (and those two aims are not really compatible anyway.)
So where do we go from here? Do I never take him out? Or do I risk a member of the public accusing him of assault? He is 14 now and about to hit a delayed puberty, it is a problem that will only get worse as he gets older, even though he is a child who is considered by all his teachers and carers to be very gentle and actually vulnerable himself. That gentleness is something we have worked so hard over the years to achieve, but now the world seems to want to throw it back in our face.
Sometimes your best just seems not to be good enough.
It is a fact of life that older people with learning difficulties can display behaviours which might be considered cute or quirky in a younger child, but are perceived as threatening in a bigger person. It is something that every carer is painfully aware of and the reason why every trip outside is planned with military precision and a view to risk assessment, including potential risk to the public. Nothing in our life can be spontaneous.
But a lot of our young people can be friendly in a way which is not age appropriate. I'm not talking about sexual here, that is a different matter altogether and should never be tolerated. But son 2 might suddenly stretch out a hand to gently stroke someone's arm for example. It his way of showing friendship and is the reflex reaction of a small child. Son 2 might be 14 but he has the cognitive function of a four year old and the social awareness of less than a two year old. I try always to be aware of this possibility, but if I am on my own with him I can't be standing on both sides to prevent it. He is also over 9 stone and too strong for me to physically move him away, as I could when he was smaller and before I wrecked my back doing so. On the rare occasions it happens, we firmly tell him no, apologise profusely and explain he is autistic. I have never yet met a negative reaction from the public if I do this.
Now of course we all understand about personal space and indeed son 2's school have done a lot of work with him on that very subject. But to find some people on a special needs forum stating that they would consider such a gentle touch to be assault, has rocked me to my core. It has made me question whether I should take son 2 out at all on my own, yet often there is no choice and our rare trips out together are limited to very familiar places anyway. Of course I appreciate there are two sides to every story, I do understand that other people don't want to be touched. I certainly do not condone such behaviour and do my best to prevent it, but it would seem that for some people that is not good enough.
Yesterday, after reading the forum I collected him from playscheme. In order to do so I had to park in the neighbouring supermarket car park and walking him back through, I found myself struggling not only with the usual worry of keeping him away from cars, but now from people as well (and those two aims are not really compatible anyway.)
So where do we go from here? Do I never take him out? Or do I risk a member of the public accusing him of assault? He is 14 now and about to hit a delayed puberty, it is a problem that will only get worse as he gets older, even though he is a child who is considered by all his teachers and carers to be very gentle and actually vulnerable himself. That gentleness is something we have worked so hard over the years to achieve, but now the world seems to want to throw it back in our face.
Sometimes your best just seems not to be good enough.
Tuesday, October 28, 2008
In the worst possible taste...
Call me old and boring if you like, I think I must be one of the few people in the world who doesn't 'get' Russell Brand. And Jonathan Ross' interview techniques can sometimes leave me cringing too, especially when he can't take his eyes off a female guest's cleavage.
The BBC pays these two men a lot of money, by anyone's standards. But their latest stunt was just sick. I'm not sure an apology is enough, learning some self control would be better.
Three notable things:
1. A recent disagreement on an internet forum has left me wondering yet again why some people can not and do not want to understand the challenging behaviours that can arise in people with learning disabilities but no obvious physical disabilities. Challenging behaviour can restrict lives just as much, if not more so, than being wheelchair bound.
2. The sun is shining. Hooray!
3. I've still got that pesky commentary to write...
The BBC pays these two men a lot of money, by anyone's standards. But their latest stunt was just sick. I'm not sure an apology is enough, learning some self control would be better.
Three notable things:
1. A recent disagreement on an internet forum has left me wondering yet again why some people can not and do not want to understand the challenging behaviours that can arise in people with learning disabilities but no obvious physical disabilities. Challenging behaviour can restrict lives just as much, if not more so, than being wheelchair bound.
2. The sun is shining. Hooray!
3. I've still got that pesky commentary to write...
Monday, October 27, 2008
The Picador blog
I have a post on there today.
Read it here
Three notable things:
1. My OU assignment story is written. Just the commentary to go.
2. Thanks to some extra respite care last week, I am surviving halfterm so far...
3. I'm on The Picador blog today. Did I already mention that?!
Read it here
Three notable things:
1. My OU assignment story is written. Just the commentary to go.
2. Thanks to some extra respite care last week, I am surviving halfterm so far...
3. I'm on The Picador blog today. Did I already mention that?!
Wednesday, October 15, 2008
To MA or not to MA?
Longer-term readers here will know that I had a plan for my writing career which went something like this...finish my 'accidental' OU Open degree with the Advanced Creative Writing course then try to get a place on a Creative Writing MA, all whilst writing my 'blockbuster' novel.
Well of course I was at risk of overloading myself, especially whilst juggling so many other family things at the same time. I have studied almost continuously for the last four years and I think I might actually appreciate a break from academia. There are also a number of practical barriers to accessing an MA course at this stage of my life. Not totally impossible, but not easy.
So this week I have done some serious thinking and I have committed myself to the novel. I shall still be doing the OU course, which will be complementary, but for now the idea of an MA is on the backburner.
Finish the degree, finish the novel and the MA courses will still be out there. In fact there may be even more choice. But I wonder if I will still want to do one?
Three notable things:
1. Son 2 has started rock climbing with school. I would love to be a fly on the wall.
2. I did a very small charity 'audit' yesterday as a favour. I'm so glad I no longer work full-time in accountancy!
3. I'm very impressed with the look of Caroline's new venture, BubbleCow. I'm sure it will be a great success.
Well of course I was at risk of overloading myself, especially whilst juggling so many other family things at the same time. I have studied almost continuously for the last four years and I think I might actually appreciate a break from academia. There are also a number of practical barriers to accessing an MA course at this stage of my life. Not totally impossible, but not easy.
So this week I have done some serious thinking and I have committed myself to the novel. I shall still be doing the OU course, which will be complementary, but for now the idea of an MA is on the backburner.
Finish the degree, finish the novel and the MA courses will still be out there. In fact there may be even more choice. But I wonder if I will still want to do one?
Three notable things:
1. Son 2 has started rock climbing with school. I would love to be a fly on the wall.
2. I did a very small charity 'audit' yesterday as a favour. I'm so glad I no longer work full-time in accountancy!
3. I'm very impressed with the look of Caroline's new venture, BubbleCow. I'm sure it will be a great success.
Tuesday, October 14, 2008
For those who have Virgin media TV...
...put it on to channel 109 and tell me how many hours you could watch/listen to that without going completely mad.
(Son 2 seems to think it is the only channel worth watching. He is very controlling. I am trying really, really, hard to ignore it, but I fear my mental health is suffering...)
Three notable things:
1. After a flash of inspiration on a bus last Saturday, I have written half a story for the first assignment of my new writing course.
2. I am getting excited that the course will also help me to pick up the novel writing again.
3. Over the space of three days I lost a tutor and gained a new one.
(Son 2 seems to think it is the only channel worth watching. He is very controlling. I am trying really, really, hard to ignore it, but I fear my mental health is suffering...)
Three notable things:
1. After a flash of inspiration on a bus last Saturday, I have written half a story for the first assignment of my new writing course.
2. I am getting excited that the course will also help me to pick up the novel writing again.
3. Over the space of three days I lost a tutor and gained a new one.
Tuesday, October 07, 2008
The X Factor
I live in a testosterone-fuelled household, so Saturday evening viewing has to be ITV rather than Strictly Come Dancing, which I can of course catch up with on BBC iPlayer anyway.
The X Factor is so far living up to what you'd expect. An array of weird and wonderful contestants at the audition stages. A handful of people who can sing but perhaps get further than they otherwise would because of their backstory. Judges sniping at each other from time to time. A new judge, Cheryl, who has shown an unexpected emotional side.
And at last we now know the final 12 for the live shows.
The groups - Louis
Frankly I don't care, none of them will win, but I liked the boy group best.
The over-25s - Danni
Did you notice how Danni looked a little like Joan Collins in the last programme? Anyway...Rachel, raw talent but a risk. I personally would have chosen Susie over Ruth, she was more consistent. Daniel, lovely guy with a very sad story, but not a star...??
The boys - Simon
Austin can sing but can he hold it together for the live shows? The other two don't inspire me yet.
The girls - Cheryl
The strongest category this year, crammed with Amy/Duffy wannabes (I love Amy and Duffy's music so in my mind that is not necessarily a Bad Thing, but I thought they were seeking someone original this year). There were four very strong contenders so sadly one had to lose out, but personally I think I would have chosen Hannah over Diana.
Three notable things:
1. How do I write a constructive criticism of a short story I hate ( but was written by a member of our course team)?
2. A long phone conversation with an old friend ths morning provided a good catch-up and some unexpected sad news.
3. Son 1 will be 17 tomorrow. My baby is old enough to learn to drive. How can that be?
The X Factor is so far living up to what you'd expect. An array of weird and wonderful contestants at the audition stages. A handful of people who can sing but perhaps get further than they otherwise would because of their backstory. Judges sniping at each other from time to time. A new judge, Cheryl, who has shown an unexpected emotional side.
And at last we now know the final 12 for the live shows.
The groups - Louis
Frankly I don't care, none of them will win, but I liked the boy group best.
The over-25s - Danni
Did you notice how Danni looked a little like Joan Collins in the last programme? Anyway...Rachel, raw talent but a risk. I personally would have chosen Susie over Ruth, she was more consistent. Daniel, lovely guy with a very sad story, but not a star...??
The boys - Simon
Austin can sing but can he hold it together for the live shows? The other two don't inspire me yet.
The girls - Cheryl
The strongest category this year, crammed with Amy/Duffy wannabes (I love Amy and Duffy's music so in my mind that is not necessarily a Bad Thing, but I thought they were seeking someone original this year). There were four very strong contenders so sadly one had to lose out, but personally I think I would have chosen Hannah over Diana.
Three notable things:
1. How do I write a constructive criticism of a short story I hate ( but was written by a member of our course team)?
2. A long phone conversation with an old friend ths morning provided a good catch-up and some unexpected sad news.
3. Son 1 will be 17 tomorrow. My baby is old enough to learn to drive. How can that be?
Monday, October 06, 2008
Reviving bookersatz
Unfortunately Annie, my co-editor and I were both otherwise engaged over the summer with family matters, study and life in general, so bookersatz had to take a back seat.
Today I have posted up a great review of Caroline Smailes' Black Boxes by HelenMH. I have one or two other reviews in reserve but we are now actively looking for contributions. The philosophy behind bookersatz is to post reviews of books we have enjoyed and would like to recommend to others, and to encourage our readers to add to a debate via the comments.
So if you would like to send in a review for consideration (200-300 words is ideal, certainly no more than 500 words) please contact me for details, the link to my email is in my Blogger profile. We will sort out the layout and photo, we just want as wide a range of books and contributors as possible.
Three notable things:
1. I can't believe I haven't blogged about this year's X Factor yet. Watch this space.
2. We are searching for cures for chronic insomnia (for son 1, not me!) Any ideas?
3. Reading, writing and a little bit of studying. I'm looking forward to the next 9 months...
Today I have posted up a great review of Caroline Smailes' Black Boxes by HelenMH. I have one or two other reviews in reserve but we are now actively looking for contributions. The philosophy behind bookersatz is to post reviews of books we have enjoyed and would like to recommend to others, and to encourage our readers to add to a debate via the comments.
So if you would like to send in a review for consideration (200-300 words is ideal, certainly no more than 500 words) please contact me for details, the link to my email is in my Blogger profile. We will sort out the layout and photo, we just want as wide a range of books and contributors as possible.
Three notable things:
1. I can't believe I haven't blogged about this year's X Factor yet. Watch this space.
2. We are searching for cures for chronic insomnia (for son 1, not me!) Any ideas?
3. Reading, writing and a little bit of studying. I'm looking forward to the next 9 months...
Friday, October 03, 2008
Silent Witness
Did any of you watch this on Wednesday and Thursday?
I don't want to give too much away, as it is on iPlayer for anyone who wants to catch up, but I just found the story so depressing. It depicted an area of London where some of my friends have lived, indeed one is still there. It showed the sort of society which spawns the knife and gun crime which we hear so much about, the hopelessness, the inevitability that the cycle of violence will continue.
Scary.
Three notable things:
1. I was stared at by two foxes in the garden yesterday. They are getting bolder.
2. Our next door neighbour knocked last night as her shoe had flown over the fence into our garden whilst playing football with their son.
3. This made me laugh. I never thought I would find Schiller funny.
I don't want to give too much away, as it is on iPlayer for anyone who wants to catch up, but I just found the story so depressing. It depicted an area of London where some of my friends have lived, indeed one is still there. It showed the sort of society which spawns the knife and gun crime which we hear so much about, the hopelessness, the inevitability that the cycle of violence will continue.
Scary.
Three notable things:
1. I was stared at by two foxes in the garden yesterday. They are getting bolder.
2. Our next door neighbour knocked last night as her shoe had flown over the fence into our garden whilst playing football with their son.
3. This made me laugh. I never thought I would find Schiller funny.
Wednesday, October 01, 2008
A short breather
So the final assignment for E301 has been submitted and received by the Open University. I can finally pack the books away. It has been a fascinating and challenging course and I don't regret having taken it, even though it was bloody hard at times!
Onwards now to writing again. But I decided to take this week off. On Monday I wandered around charity shops in search of play scripts and screenplays, as the Advanced Creative Writing course concentrates on drama in all forms as well as poetry and prose. I sat in Starbucks and had a coffee. I took the bus home in the sunshine. Yesterday I huddled indoors, feeling the cold. I started to tidy the house. I read lots of blogs and surfed the web. I did a little knitting. I dragged son 1 out of bed at lunchtime.
Today I went to the parent support coffee morning and managed to fall flat on my face in Tesco's carpark. Life goes on as usual...
Three notable things:
1. We continue to celebrate the tiny steps son 2 is making in his communication. On Saturday he told his music therapist that it was time to finish by pointing at her watch and then at the door.
2. I've had a bank account with Lloyds TSB since I was 18. Should I be worried?
3. Sarah Palin's political ineptitude is astounding. It would be funny if it weren't for the fact that she could end up a heartbeat away from being President of the USA.
Onwards now to writing again. But I decided to take this week off. On Monday I wandered around charity shops in search of play scripts and screenplays, as the Advanced Creative Writing course concentrates on drama in all forms as well as poetry and prose. I sat in Starbucks and had a coffee. I took the bus home in the sunshine. Yesterday I huddled indoors, feeling the cold. I started to tidy the house. I read lots of blogs and surfed the web. I did a little knitting. I dragged son 1 out of bed at lunchtime.
Today I went to the parent support coffee morning and managed to fall flat on my face in Tesco's carpark. Life goes on as usual...
Three notable things:
1. We continue to celebrate the tiny steps son 2 is making in his communication. On Saturday he told his music therapist that it was time to finish by pointing at her watch and then at the door.
2. I've had a bank account with Lloyds TSB since I was 18. Should I be worried?
3. Sarah Palin's political ineptitude is astounding. It would be funny if it weren't for the fact that she could end up a heartbeat away from being President of the USA.
Friday, September 26, 2008
Black Boxes
Last night I had a lovely evening out at the launch of Caroline Smailes' new novel, Black Boxes, at Borders in Oxford Street. Sadly I couldn't make it in time to hear Caroline read, but she looked gorgeous and had a constant stream of customers at her signing table, while her husband and three beautiful children helped out amongst the guests.
It was rather like a bloggers reunion...lots of lovely Novel Racers, of course, including Liz on a flying visit back from the Middle East, but I also met Helen - who has written some great reviews for bookersatz - Sue Guiney and DJ Kirkby for the first time, all of whom were so friendly and it was great to see Sarah Salway again ( for those of you who don't know, Sarah co-edited the book Your Messages in which I got my first pieces published in print earlier this year).
Despite my lateness I arrived before the wine ran out and I came away with a signed copy of Black Boxes, which I am very much looking forward to reading. Having just done the OU E301 course, I now have an even greater appreciation of Caroline's style and how she has brought her linguistics background to play in her novel writing. It is all very clever, but those of you who have read any of Caroline's books will already know that!
Three notable things:
1. My end of course assessment for E301 is finished. I proofread it on the tube into London last night, put a few minor adjustments in this morning, will print it over the weekend and it will go on Monday. Hooray!
2. The results of all the tests my mother has been given are starting to come in. Nothing too awful yet but no firm conclusions either.
3. If you like knitting take a look at this new online shop, Cafe Knit. I think the website design is just beautiful.
Thursday, September 18, 2008
A new autism blog
Well, new to me anyway.
Yesterday I discovered Living not Drowning, quite by chance. I happen to know lovely Karen and her two beautiful children, but I had no idea she was also a blogger. Reading her blog took me back to how it was for us ten years ago, how stressful it was finding a school placement for son 2 and just dealing with life in general. It also made me appreciate how much easier son 2 is now, or perhaps it is just that my own ability to cope with him has improved.
If you have any interest in autism or living with a child with special needs do read Karen's blog, a beautifully written and honest account of the daily struggles. Oh and she is not just a wonderful mum but a great knitter too!
Three notable things:
1. The world of finance seems to be collapsing around us. Of course I should understand what is going on, but it is so long since I worked fulltime in auditing that it is a total mystery. I'm a little concerned for a friend whose husband works for HBOS though.
2. I'm about half way through my end of course assessment, with less than two weeks before it needs to be submitted. At least I have got some sort of structure to the essay at last and know roughly where I am heading. That's a start.
3. Everyone in the house is either coughing or sneezing...
Yesterday I discovered Living not Drowning, quite by chance. I happen to know lovely Karen and her two beautiful children, but I had no idea she was also a blogger. Reading her blog took me back to how it was for us ten years ago, how stressful it was finding a school placement for son 2 and just dealing with life in general. It also made me appreciate how much easier son 2 is now, or perhaps it is just that my own ability to cope with him has improved.
If you have any interest in autism or living with a child with special needs do read Karen's blog, a beautifully written and honest account of the daily struggles. Oh and she is not just a wonderful mum but a great knitter too!
Three notable things:
1. The world of finance seems to be collapsing around us. Of course I should understand what is going on, but it is so long since I worked fulltime in auditing that it is a total mystery. I'm a little concerned for a friend whose husband works for HBOS though.
2. I'm about half way through my end of course assessment, with less than two weeks before it needs to be submitted. At least I have got some sort of structure to the essay at last and know roughly where I am heading. That's a start.
3. Everyone in the house is either coughing or sneezing...
Wednesday, September 17, 2008
Ebooks
I wandered into our local Waterstone's last Saturday and whilst I was browsing I came across the Sony Ebook reader which they have just launched there. Being curious, I had to have a little look.
I want to like ebooks. I quite like gadgets, so the idea of getting so many volumes on one little piece of equipment is appealing. It would certainly save space in our house which is looking more and more like a public library ( but less tidy). I do sometimes read ebooks on my laptop now, just to save a few trees.
But I don't think I could justify buying an ebook reader. For a start there is the cost...£200 before you've even put a book on it. Yes the Sony comes with a vast CD of out-of-copyright classics, but most classics are available to download as free ebooks anyway if you search the web. Another ebook reader available in the UK costs almost £400. Then there is the cost of the books themselves. Ebooks are only marginally cheaper than the list price of their print equivalent, depite the fact that once the ebook has been produced there is no ongoing manufacturing cost. Why, when I can walk up the road and pick up a paperback novel for as little as 39p in our local hospice charity shop, would I want to pay that much money (except perhaps for books that are hard to source)?
Then there is the digital rights problem. Ebooks come in a number of formats which are not compatible with each other. Not every book is published in every format and they can only be read by the purchaser on a small number of compatible and registered gadgets. So if you go with Sony now, you may well be tying yourself into Sony in the long term...fine if you get on with it, not so good if you don't.
I'll admit that I do have some ebooks on my computer and two different ebook readers...Microsoft Reader and Adobe Digital Editions. Many of the books are classics I have downloaded for free, others are slightly obscure writing textbooks or other nonfiction which I have purchased electronically to save space at home. I don't really enjoy reading books on a screen enough to read for pleasure that way, so for now I don't really see the point of an ebook reader. I don't commute, I don't go on long flights,I'm quite happy with just a paperback stuffed into my handbag when needed.
The only ebook benefit I can see is that because the print can be resized I can pop some OU manuals and other textbooks onto a memory stick and read them on the tiny screen of my Eee pc using Microsoft Reader or Adobe Reader, if I am away from home. For now I think that will have to do, though of course were I to be given a Sony Reader for Christmas I'm sure I could probably be converted...
Three notable things:
1. Got son 1 to the dentist yesterday. He did have to have one filling but it was only a tiny one and was done then and there.
2. The juggling the doctor's appointments on Monday didn't work out well. I just knew it wouldn't!
3. Better late than never, I forgot to mention earlier that the lovely Calistro has had not one but two bits of brilliant and well-deserved writing news recently, something to give hope to us all!
Thursday, September 11, 2008
The hockey mom
I'm fascinated by Sarah Palin. It's always good to see a woman being given the opportunity to reach a high level in politics, the workplace, anything. She's attractive, feisty, talks the talk...
BUT.
Her beliefs are reactionary. She apparently doesn't believe in abortion, whatever the circumstances of conception, even rape. She thinks that teenagers should be taught abstinence as contraception. Now I am not for one minute suggesting that Sarah's 17 year old daughter Bristol should have had an abortion, she is above the age of consent and that choice is for her and her alone. I am not too sure that I would be happy about my 17 year old getting married, but again that is the young couple's personal choice. At least I hope it is. What worries me is that Sarah Palin's conservative policy views would not enable other teenagers to have choices in future, nor help educate them in safe sex. Even the experiences of her own family have not made her get real.
What concerns me even more is that Sarah is the mother of a five month old son with Down's Syndrome. Again I respect her decision to carry on with the pregnancy, if indeed she knew the diagnosis before birth. I do not in any way believe that all disabled babies should be aborted, to do so would devalue the life of my own son. After all, many disabilities cannot be detected in the womb or actually occur due to birth accidents. But I do defend the opportunity for parents to have information and choices where appropriate.
At five months old it is surely too early to establish what that child's prognosis is, beyond recognising or ruling out some perhaps medical issues such as the heart problems which are common with the syndrome. For every happy, smiley child with Down's, there is probably a much more severely learning disabled one. A dual diagnosis of Down's and autism is not uncommon, with all the behavioural problems that can bring. All children with the syndrome will require support throughout their lives.
I have personal experience of how much attention a child with special needs requires in the early years. The importance of early intervention. The number of therapy and assessment appointments which must be attended. The battles to get the right help, the right education (though I guess a Governor/possible Vice President might not have to fight the same battles?). It's hard enough to balance all that with one other child and a very part-time job. I can only assume that Sarah Palin does not intend to take on the role of main carer herself. But what about the emotional impact of just being his Mum?
I wish her luck with her family.
Three notable things:
1. The doctor's surgery had misbooked my appointment for next Thursday instead of today. I have had to rebook for Monday and will be rushing from one doctor for myself to another to discuss son 2's x-ray...
2. I have a written a little more of my assessment today but have found it hard to concentrate because of...
3. ....Caroline's Black Boxes Widget! If you are visiting my blog from the widget please do stop and say hello in the comments, so I can visit you too! ( PS who on earth would offer the choice of toothache or migraine?!)
BUT.
Her beliefs are reactionary. She apparently doesn't believe in abortion, whatever the circumstances of conception, even rape. She thinks that teenagers should be taught abstinence as contraception. Now I am not for one minute suggesting that Sarah's 17 year old daughter Bristol should have had an abortion, she is above the age of consent and that choice is for her and her alone. I am not too sure that I would be happy about my 17 year old getting married, but again that is the young couple's personal choice. At least I hope it is. What worries me is that Sarah Palin's conservative policy views would not enable other teenagers to have choices in future, nor help educate them in safe sex. Even the experiences of her own family have not made her get real.
What concerns me even more is that Sarah is the mother of a five month old son with Down's Syndrome. Again I respect her decision to carry on with the pregnancy, if indeed she knew the diagnosis before birth. I do not in any way believe that all disabled babies should be aborted, to do so would devalue the life of my own son. After all, many disabilities cannot be detected in the womb or actually occur due to birth accidents. But I do defend the opportunity for parents to have information and choices where appropriate.
At five months old it is surely too early to establish what that child's prognosis is, beyond recognising or ruling out some perhaps medical issues such as the heart problems which are common with the syndrome. For every happy, smiley child with Down's, there is probably a much more severely learning disabled one. A dual diagnosis of Down's and autism is not uncommon, with all the behavioural problems that can bring. All children with the syndrome will require support throughout their lives.
I have personal experience of how much attention a child with special needs requires in the early years. The importance of early intervention. The number of therapy and assessment appointments which must be attended. The battles to get the right help, the right education (though I guess a Governor/possible Vice President might not have to fight the same battles?). It's hard enough to balance all that with one other child and a very part-time job. I can only assume that Sarah Palin does not intend to take on the role of main carer herself. But what about the emotional impact of just being his Mum?
I wish her luck with her family.
Three notable things:
1. The doctor's surgery had misbooked my appointment for next Thursday instead of today. I have had to rebook for Monday and will be rushing from one doctor for myself to another to discuss son 2's x-ray...
2. I have a written a little more of my assessment today but have found it hard to concentrate because of...
3. ....Caroline's Black Boxes Widget! If you are visiting my blog from the widget please do stop and say hello in the comments, so I can visit you too! ( PS who on earth would offer the choice of toothache or migraine?!)
Wednesday, September 10, 2008
Ooh...
Today a parcel arrived via DHL. The materials for the new OU Advanced Creative Writing Course, mailed out a good week earlier than we had expected.
I've taken a look. I think it will be challenging and a little scary, I can't wait for the course to start.
But until then I have packed the book away, because I've still got my end of course assessment for the current course to write. Mustn't let myself get too distracted...
Three notable things:
1. If, like me, you won't be reading the novels shortlisted for the Man Booker Prize, you can take a shortcut here.
2. This morning I had my teeth cleaned by the dental hygienist, at great expense. Son 1, who had announced that dentists were for wimps, or words to that effect, suddenly decided this evening that I should book a long overdue check up for him...
3. Lovely Caroline Smailes has a new novel, Black Boxes, coming out this month. She has a fantastic new widget on her blog ( and now on here too), which will take you on a decision based blog adventure. Go and play, it's addictive fun...
I've taken a look. I think it will be challenging and a little scary, I can't wait for the course to start.
But until then I have packed the book away, because I've still got my end of course assessment for the current course to write. Mustn't let myself get too distracted...
Three notable things:
1. If, like me, you won't be reading the novels shortlisted for the Man Booker Prize, you can take a shortcut here.
2. This morning I had my teeth cleaned by the dental hygienist, at great expense. Son 1, who had announced that dentists were for wimps, or words to that effect, suddenly decided this evening that I should book a long overdue check up for him...
3. Lovely Caroline Smailes has a new novel, Black Boxes, coming out this month. She has a fantastic new widget on her blog ( and now on here too), which will take you on a decision based blog adventure. Go and play, it's addictive fun...
Monday, September 08, 2008
Taking stock
It's been a funny old year so far. If I tried to tell someone what has gone on, they probably wouldn't believe that so much could happen in one family in a period of six months.
Son 1 and the remaining grandparents all still have health challenges ahead. Yesterday my Mum had a brain scan, today she sees a psychologist ( or maybe psychiatrist, I'm not certain). Hopefully at the end of all her assessments a clearer picture and possible prognosis will emerge.
I'm in the finishing straight of my OU E301 course, with just the end of course assessment to complete in the next three weeks. It has been a real challenge to do the course alongside all the family crises but I'm glad I stuck with it. The course has been fascinating and challenging in equal measures, but I have certainly learned a lot.
A new creative writing course is on the horizon and I hope it will banish the writer's block which E301 induced. I am really looking forward to kick-starting my creative side again. Then I have to make some serious decisions about whether to apply for an MA course for next year or wait a little, bearing in mind that I am not getting any younger...
Three notable things:
1. Son 2 went back to school this term with a skip and a smile.
2. Andy Murray has just beaten Rafael Nadal for the first time. He can obviously play tennis but I do wish someone would send him to charm school...
3. Although I am usually pretty apolitical, I am fascinated by what currently happening in the USA. Whichever side wins, there will certainly be a big step forward in equal opportunities. But...( and I may come back to this another day!)
Son 1 and the remaining grandparents all still have health challenges ahead. Yesterday my Mum had a brain scan, today she sees a psychologist ( or maybe psychiatrist, I'm not certain). Hopefully at the end of all her assessments a clearer picture and possible prognosis will emerge.
I'm in the finishing straight of my OU E301 course, with just the end of course assessment to complete in the next three weeks. It has been a real challenge to do the course alongside all the family crises but I'm glad I stuck with it. The course has been fascinating and challenging in equal measures, but I have certainly learned a lot.
A new creative writing course is on the horizon and I hope it will banish the writer's block which E301 induced. I am really looking forward to kick-starting my creative side again. Then I have to make some serious decisions about whether to apply for an MA course for next year or wait a little, bearing in mind that I am not getting any younger...
Three notable things:
1. Son 2 went back to school this term with a skip and a smile.
2. Andy Murray has just beaten Rafael Nadal for the first time. He can obviously play tennis but I do wish someone would send him to charm school...
3. Although I am usually pretty apolitical, I am fascinated by what currently happening in the USA. Whichever side wins, there will certainly be a big step forward in equal opportunities. But...( and I may come back to this another day!)
Thursday, August 28, 2008
Gadget girl
I'm writing this from my parents house in Devon on my new toy, an Asus Eee pc 901, using a mobile broadband gadget. Just because I can.
Home tomorrow and I will catch up more then.
Home tomorrow and I will catch up more then.
Friday, August 15, 2008
Well, that was easy...
On Tuesday we had to take Son 2 to the hospital for a knee x-ray. It wasn't urgent, we know the limp he displays is probably congenital, but having consulted our GP about it last week we needed to get it done.
After previous difficult experiences, I know that a non-emergency hospital visit has to be planned like a military campaign. One thing that autistic people don't do well is wait patiently, especially in crowded waiting rooms. The outpatient x-ray department in our hospital is right next door to the pharmacy, with one open-plan waiting area for both. During the day it is chaotic.
So the first part of the plan was to phone ahead and check the potentially quietest time, which turned out to be around 7pm. We then had to choose our day...both Hubby and I would need to be available to go and we decided that Son 2 would be more co-operative if he hadn't just had a long day at playscheme. We settled on Tuesday, a whole week after we'd actually seen the GP.
On the day I used our symbol software to write a social story for Son 2, explaining the timetable for the evening. Hubby bought a new DVD as a bribe/reward, which son 2 could carry into the hospital. When we arrived, we were lucky enough to find a free disabled parking space and Son 2 trotted happily into the building. The x-ray department was empty. Despite a short hold up at the desk because our GP had not put the surgery details on the form (luckily I know them by heart!), Son 2 was seen immediately. He co-operated to the best of his ability and the job was soon done with no stress involved for anyone.
Back to the car, breathing a sigh of relief, only to get caught in the heaviest downpour you could imagine. But as we finally turned into our road we we were greeted by the sight of a beautiful double rainbow...
Three notable things:
1. After a freezing cold start to the day it is warm and sunny, just as summer should be.
2. I am nervously awaiting the return of my last Open University assignment, whilst trying to concentrate on planning the next.
3. The GB team is doing quite well at the Olympics so far, despite a few disasters...
After previous difficult experiences, I know that a non-emergency hospital visit has to be planned like a military campaign. One thing that autistic people don't do well is wait patiently, especially in crowded waiting rooms. The outpatient x-ray department in our hospital is right next door to the pharmacy, with one open-plan waiting area for both. During the day it is chaotic.
So the first part of the plan was to phone ahead and check the potentially quietest time, which turned out to be around 7pm. We then had to choose our day...both Hubby and I would need to be available to go and we decided that Son 2 would be more co-operative if he hadn't just had a long day at playscheme. We settled on Tuesday, a whole week after we'd actually seen the GP.
On the day I used our symbol software to write a social story for Son 2, explaining the timetable for the evening. Hubby bought a new DVD as a bribe/reward, which son 2 could carry into the hospital. When we arrived, we were lucky enough to find a free disabled parking space and Son 2 trotted happily into the building. The x-ray department was empty. Despite a short hold up at the desk because our GP had not put the surgery details on the form (luckily I know them by heart!), Son 2 was seen immediately. He co-operated to the best of his ability and the job was soon done with no stress involved for anyone.
Back to the car, breathing a sigh of relief, only to get caught in the heaviest downpour you could imagine. But as we finally turned into our road we we were greeted by the sight of a beautiful double rainbow...
Three notable things:
1. After a freezing cold start to the day it is warm and sunny, just as summer should be.
2. I am nervously awaiting the return of my last Open University assignment, whilst trying to concentrate on planning the next.
3. The GB team is doing quite well at the Olympics so far, despite a few disasters...
Tuesday, August 12, 2008
Credit crunch
So how is it affecting you?
I was interested to read this article yesterday, saying that the food bill for the average family has risen by £27 a week, as that is exactly what I had thought. We are an average size family (although two teenage boys do eat more than average...) and I was only thinking last week that I seemed to be spending around £25 a week more, even though I don't shop extravagantly.
Then of course there are the fuel price increases. We are a two car family but getting rid of one is not an option, as Hubby uses his for work and I need my tiny old car to taxi Son 2 around, even though I use public transport myself whenever possible. We use the washing machine and tumble dryer at least once a day because of the mess Son 2 creates, though we haven't replaced the broken dishwasher. The house needs to be heated all day in winter as I work mainly from home. Our council tax is already huge and will no doubt increase even further.
But in many ways we are lucky. Our mortgage is finally paid off, five years early. We had a deliberate policy to make the most of a more prosperous cycle (Hubby, being originally an economist, is quite tuned into the cycles of the economy) and were also lucky enough to inherit some money to pay off a chunk. So we are not going to get caught out by rising interest rates or the need to find a new mortgage at the end of a fixed rate deal. Although house prices are falling, our house is still currently worth about twice what we have spent on it. After all, what is most important is having a place to live and it is just about big enough for us all (though the conservatory plans are on hold temporarily).
We live for now. What we don't have is adequate pension provision, because living on one and a little bit salaries we can't afford to pay into pension plans. Our eggs are all in one basket as far as work is concerned, since I am also employed as a very part-time accountant by Hubby's company, so if it were to fail we'd lose both salaries at once. He works in an industry that is already seeing a huge downturn, though the nature of his work is perhaps more recession proof than some. We are about to lose child benefit for Son 1 as he is not going to college yet. The complications of the benefit system and the need for after school and holiday care restrict my own earnings capacity, otherwise we could end up worse off by losing my Carers Allowance.
We are OK for now. We are not in debt. We do have some back up savings from the days when we had two well-paid jobs. But I believe the credit crunch is real and it will hit us all hard next winter when our power bills increase. I just pity anyone trying to move house or get on the housing ladder.
Three notable things:
1. Working with the BBC webfeed of the Olympics on in the background and celebrating welcome early British successes.
2. The kindness of the staff who look after Son 2 on holiday playschemes.
3. Trying not to worry too much about the news that my mother is displaying some worrying symptoms of confusion. Best to wait until she has seen the consultants and we find out something more concrete.
I was interested to read this article yesterday, saying that the food bill for the average family has risen by £27 a week, as that is exactly what I had thought. We are an average size family (although two teenage boys do eat more than average...) and I was only thinking last week that I seemed to be spending around £25 a week more, even though I don't shop extravagantly.
Then of course there are the fuel price increases. We are a two car family but getting rid of one is not an option, as Hubby uses his for work and I need my tiny old car to taxi Son 2 around, even though I use public transport myself whenever possible. We use the washing machine and tumble dryer at least once a day because of the mess Son 2 creates, though we haven't replaced the broken dishwasher. The house needs to be heated all day in winter as I work mainly from home. Our council tax is already huge and will no doubt increase even further.
But in many ways we are lucky. Our mortgage is finally paid off, five years early. We had a deliberate policy to make the most of a more prosperous cycle (Hubby, being originally an economist, is quite tuned into the cycles of the economy) and were also lucky enough to inherit some money to pay off a chunk. So we are not going to get caught out by rising interest rates or the need to find a new mortgage at the end of a fixed rate deal. Although house prices are falling, our house is still currently worth about twice what we have spent on it. After all, what is most important is having a place to live and it is just about big enough for us all (though the conservatory plans are on hold temporarily).
We live for now. What we don't have is adequate pension provision, because living on one and a little bit salaries we can't afford to pay into pension plans. Our eggs are all in one basket as far as work is concerned, since I am also employed as a very part-time accountant by Hubby's company, so if it were to fail we'd lose both salaries at once. He works in an industry that is already seeing a huge downturn, though the nature of his work is perhaps more recession proof than some. We are about to lose child benefit for Son 1 as he is not going to college yet. The complications of the benefit system and the need for after school and holiday care restrict my own earnings capacity, otherwise we could end up worse off by losing my Carers Allowance.
We are OK for now. We are not in debt. We do have some back up savings from the days when we had two well-paid jobs. But I believe the credit crunch is real and it will hit us all hard next winter when our power bills increase. I just pity anyone trying to move house or get on the housing ladder.
Three notable things:
1. Working with the BBC webfeed of the Olympics on in the background and celebrating welcome early British successes.
2. The kindness of the staff who look after Son 2 on holiday playschemes.
3. Trying not to worry too much about the news that my mother is displaying some worrying symptoms of confusion. Best to wait until she has seen the consultants and we find out something more concrete.
Friday, August 08, 2008
Ageing
I'm suddenly feeling rather old.
It's not just the hot flushes, which have hit me in a big way in our humid summer weather.
It's not even the fact that son 1 has officially left school...not that he was actually there for the last two years, but you know what I mean.
Nor is it the fact that all our surviving parents have suddenly become more frail, both mentally and physically, and are likely to need a lot more input from us in future, even though they live so far away.
Most worrying of all is the fact that I'm starting to think I would like to move away from the city. For someone who grew up in the middle of nowhere and worked so hard to be able to move to 'civilisation', that is a shocker. But, even though we live in statistically the safest borough in London, as the mother of teenage boys I worry. London no longer seems civilised. I want out, though that isn't possible due to Hubby's job and son 2's specialist schooling.
Three notable things:
1. Son 2 behaved beautifully when we had to take him to the doctor on Monday.
2. Only one more assignment and a final assessment to go on my course, then I can look forward to studying writing again.
3. One week of son 2's summer holiday down, three to go...
It's not just the hot flushes, which have hit me in a big way in our humid summer weather.
It's not even the fact that son 1 has officially left school...not that he was actually there for the last two years, but you know what I mean.
Nor is it the fact that all our surviving parents have suddenly become more frail, both mentally and physically, and are likely to need a lot more input from us in future, even though they live so far away.
Most worrying of all is the fact that I'm starting to think I would like to move away from the city. For someone who grew up in the middle of nowhere and worked so hard to be able to move to 'civilisation', that is a shocker. But, even though we live in statistically the safest borough in London, as the mother of teenage boys I worry. London no longer seems civilised. I want out, though that isn't possible due to Hubby's job and son 2's specialist schooling.
Three notable things:
1. Son 2 behaved beautifully when we had to take him to the doctor on Monday.
2. Only one more assignment and a final assessment to go on my course, then I can look forward to studying writing again.
3. One week of son 2's summer holiday down, three to go...
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