You've probably been wondering where I was. In fact for much of this year I've been wondering where I am too. I've been lost.
It has been a difficult year. On the positive side, Son 1 did exceptionally well at college and is now at his first choice university. On the negative side Son 2 regressed into increasingly difficult behaviour. His anxiety increased and his mood darkened. We still don't know whether home or school was the cause, but I suspect both. Without wanting to go into too much detail, I became a victim of abuse.
I was lucky that Son 2 currently has an excellent social worker who responded very quickly, but he and I were badly let down by another professional who was supposed to be helping with his behaviour. The crisis escalated to the point where we had no choice but to let social services accomodate him in order to safeguard me, as a physically vulnerable adult myself.
The wonderful social worker swung into action again and just a couple of weeks later Son 2 was able to move from respite care into a specialist residential placement which will hopefully be his long term home. It means that he has left school a year earlier than planned, but he can get consistent care and regular psychology input at the home as well as learning life skills and trying new activities. It is a lovely, newly renovated building and he was the second resident into this brand new service. He seems very happy and settled there and it is very much what we'd have been wanting for him next year anyway.
Of course you don't stop being a carer just because someone no longer lives under the same roof. Son 2 now lives 50 miles away from us but we visit when we can and I am in regular contact with his carers by phone. I organise his finances, liaise with his social worker and attend meetings about his placement. He is still very much part of our family, even though, like his brother, he has reached the age to leave home.
The events of this year have left me shaken and for a while I understood exactly how women who victims of any sort of abuse feel. My health is currently suffering and I have not been able to write creatively since the start of the year. I'd had lots of plans for the next year, to bring me to the place I wanted to be when both boys had left home. The timetable has been thrown into disarray, but I shall still go ahead.
But that brings me to the future of this blog. It's been a record of my sons and my writing. The boys are now both independent adults and it is no longer appropriate to write much about them. The creative writing has temporarily stalled. This is the 700th post on this blog but it could be one of the last.
I'm planning a new writing and creativity related blog to accompany what I hope will be my future life path. I'll be sure to let you know when that is up and running and I hope you'll follow me there. In the meantime thanks for reading about my journey so far and bear with me while I reinvent myself.
Showing posts with label family. Show all posts
Showing posts with label family. Show all posts
Sunday, November 18, 2012
Saturday, March 31, 2012
End of an era
I often get to the end of a month and take stock of what has happened and what I have achieved. This month was no exception and the achievement was a significant one.
Earlier this month Son 2 turned eighteen, which means that we have safely raised both our children to adulthood. Now that might not seem like anything special, but anyone who knows our family history will realise that even from the very first days of parenthood it might not have been the case and there have been other scares along the way.
Our next task as parents is to prepare them both to fly the nest over the coming eighteen months, if all goes to plan. I can no longer tick a box which says I have a child here, we now only have adult children living with us, which is legally something completely different. After more than twenty years, it's the end of an era.
Earlier this month Son 2 turned eighteen, which means that we have safely raised both our children to adulthood. Now that might not seem like anything special, but anyone who knows our family history will realise that even from the very first days of parenthood it might not have been the case and there have been other scares along the way.
Our next task as parents is to prepare them both to fly the nest over the coming eighteen months, if all goes to plan. I can no longer tick a box which says I have a child here, we now only have adult children living with us, which is legally something completely different. After more than twenty years, it's the end of an era.
Sunday, August 07, 2011
Summertime blues
We are just over one week into Son 2's summer holiday. Now we are lucky, because he gets a shorter vacation than most, four and a half weeks rather than the normal six, and we do have some respite. He will be attending a local special needs playscheme for two days, that is ten hours, a week.
Those hours are precious. They give a chance for us to recharge our batteries, for me to write. In the past I had to try to fit my own errands, as well as fun for Son 1, into the precious free time. It's easier now there are two of us around and of course Son 1 is independent, apart from the occasional lift.
Son 2 just doesn't do going out. He likes routine and familiar places, such as the playscheme which he has attended for years, but he has a huge fear of the unknown which permeates his life, whether at home or at school. This, of course, affects the whole family. For years now holidays and even day trips have proved impossible. We tried, we really did, but having to put your child through what is for them a form of torture is no fun for anyone, including innocent members of the public who happen to witness the resulting distress. As a child gets bigger the expression of anxiety becomes less socially acceptable and more difficult for carers to physically handle. And as children get older they can and should make their own decisions about what they want to do as leisure activities. But it is something that other parents, even those with differently affected special needs children, don't always easily comprehend.
Of course this time next year Son 2 will be under the adult social services team. His playscheme is run by a children's charity and not linked to his autism-specific out of borough school, so he may have nothing and that is a worry. It would be lovely to think that with maturity he will become more adaptable, but I seriously doubt that will happen.
For now we are spending our summer largely bunkered up in our own house and occasionally, as long as Son 2 can't hear any emergency sirens, the garden. I try not to get into conversations with friends about their wonderful holidays and fun camping trips. And I take vitamin D tablets to try to counter the lack of sunlight which is implicated in MS.
There seems to be an agoraphobic tendency running down my family, though thankfully one I escaped. We've developed our current approach to the summer holiday in order to preserve Son 2's mental health and existing behaviour levels, as a deterioration in those would affect us all year round, as well as his potential adulthood care. It's worth it.
Those hours are precious. They give a chance for us to recharge our batteries, for me to write. In the past I had to try to fit my own errands, as well as fun for Son 1, into the precious free time. It's easier now there are two of us around and of course Son 1 is independent, apart from the occasional lift.
Son 2 just doesn't do going out. He likes routine and familiar places, such as the playscheme which he has attended for years, but he has a huge fear of the unknown which permeates his life, whether at home or at school. This, of course, affects the whole family. For years now holidays and even day trips have proved impossible. We tried, we really did, but having to put your child through what is for them a form of torture is no fun for anyone, including innocent members of the public who happen to witness the resulting distress. As a child gets bigger the expression of anxiety becomes less socially acceptable and more difficult for carers to physically handle. And as children get older they can and should make their own decisions about what they want to do as leisure activities. But it is something that other parents, even those with differently affected special needs children, don't always easily comprehend.
Of course this time next year Son 2 will be under the adult social services team. His playscheme is run by a children's charity and not linked to his autism-specific out of borough school, so he may have nothing and that is a worry. It would be lovely to think that with maturity he will become more adaptable, but I seriously doubt that will happen.
For now we are spending our summer largely bunkered up in our own house and occasionally, as long as Son 2 can't hear any emergency sirens, the garden. I try not to get into conversations with friends about their wonderful holidays and fun camping trips. And I take vitamin D tablets to try to counter the lack of sunlight which is implicated in MS.
There seems to be an agoraphobic tendency running down my family, though thankfully one I escaped. We've developed our current approach to the summer holiday in order to preserve Son 2's mental health and existing behaviour levels, as a deterioration in those would affect us all year round, as well as his potential adulthood care. It's worth it.
Friday, June 24, 2011
Going back in time
Today I went to visit a university with Son 1. Not just any university, but the very one from which I graduated 29 years ago, almost to the day.
We went with Son 1's girlfriend, one of her friends and her mother, A, who by coincidence also studied there, a year behind me.
For A and me it was an exciting day, a trip down memory lane. Whilst there have been considerable changes for the better over the intervening years, many familiar landmarks awaited us and I think I can say we both fell in love with the place all over again. I remembered all the good times and conveniently forgot the occasional heartbreak, perhaps she did too. And most importantly for me, Son 1 fell in love with the university too. He could see himself there and I think it may be a dead cert for his UCAS application.
As we looked round the sparkling new function hall in the Students' Union I couldn't help remembering some of the bands I saw in the tatty old place. Here's The Tourists (the precursor to the Eurythmics)
We went with Son 1's girlfriend, one of her friends and her mother, A, who by coincidence also studied there, a year behind me.
For A and me it was an exciting day, a trip down memory lane. Whilst there have been considerable changes for the better over the intervening years, many familiar landmarks awaited us and I think I can say we both fell in love with the place all over again. I remembered all the good times and conveniently forgot the occasional heartbreak, perhaps she did too. And most importantly for me, Son 1 fell in love with the university too. He could see himself there and I think it may be a dead cert for his UCAS application.
As we looked round the sparkling new function hall in the Students' Union I couldn't help remembering some of the bands I saw in the tatty old place. Here's The Tourists (the precursor to the Eurythmics)
Monday, June 13, 2011
Half term blues
I'm back.
I've had some hopefully temporary problems with Blogger, which have made posting and commenting difficult.
I've also been battling my way through half term, feeling guilty about the amount of work I'm able to do (or rather not able to do). I tend to use school holiday time for catching up on reading, rather than writing, but during this long half term even that has proved difficult, due to Son 2's constant noise levels. Right now he has the radio on in the kitchen (it was a pop channel, Radio 1 perhaps, but has just been changed to classical) and at the same time is watching YouTube videos on the computer in the living room. I often feel as if my head is going to explode.
My mind is also flitting in a very haphazard manner between different writing projects, some started but none completed, and I need to rediscover my focus. Son 2 is back to school tomorrow, after 17 days at home, so that should help.
Novel one is back out there and I'm at that stage of checking my email regularly, hoping, hoping...
I've had some hopefully temporary problems with Blogger, which have made posting and commenting difficult.
I've also been battling my way through half term, feeling guilty about the amount of work I'm able to do (or rather not able to do). I tend to use school holiday time for catching up on reading, rather than writing, but during this long half term even that has proved difficult, due to Son 2's constant noise levels. Right now he has the radio on in the kitchen (it was a pop channel, Radio 1 perhaps, but has just been changed to classical) and at the same time is watching YouTube videos on the computer in the living room. I often feel as if my head is going to explode.
My mind is also flitting in a very haphazard manner between different writing projects, some started but none completed, and I need to rediscover my focus. Son 2 is back to school tomorrow, after 17 days at home, so that should help.
Novel one is back out there and I'm at that stage of checking my email regularly, hoping, hoping...
Saturday, June 04, 2011
Panorama on care home abuse
I haven't blogged for a while. Sorry, but there have been family matters to resolve.
Firstly we had to take Son 2 to see a neurologist and the appointment came through more quickly than we had expected. He has been started on a small dose of some medication so we are having to monitor him for changes and possible side effects.
On Tuesday I had to attend a meeting with Son 2's social worker and the lady from Connexions (the careers service) who deals with special needs in our area. It was a meeting to kick off the planning for his transfer to adult services for continuing education and residential care. Despite my best efforts, I went into the meeting feeling rather unprepared, having failed to find out some of the information I needed, however the meeting actually went fairly well. I don't think there was much disagreement about what he actually needs, but I am under no illusion that this is going to be easy and we have to start looking at what will realistically be available to him when he leaves school at 19. But with such savage cuts, and services which are budget-led, who can predict anything?
Then I came home to face the BBC Panorama programme about the abuse of young adults with severe learning difficulties in a specialist care facility in Bristol. I didn't actually watch it, I couldn't, as even what I'd read in advance made me feel sick to the stomach. The media reports, including this in the Daily Mail by the BBC undercover reporter, were more than enough for me.
I'm glad the abuse was exposed and I hope that the programme will lead to improvements in standards in both the inspection procedures and rogue care facilities such as that one. But I think it's also important to hang on to the fact that not all care homes are like that and Casdok has written a very good blog post about the response to Panorama from her own son's care home. As parents and carers we have a huge responsibility to search out the best for our children and to monitor it for as long as we are able, because it's possible that nobody else will give them a voice unless they are in one of the good care homes such as that one.
But when we can no longer do that, then what?
PS And while I'm on the subject of the Panorama expose, you might like to conside signing the petition the National Autistic Society has set up in the aftermath. You can find it here.
Firstly we had to take Son 2 to see a neurologist and the appointment came through more quickly than we had expected. He has been started on a small dose of some medication so we are having to monitor him for changes and possible side effects.
On Tuesday I had to attend a meeting with Son 2's social worker and the lady from Connexions (the careers service) who deals with special needs in our area. It was a meeting to kick off the planning for his transfer to adult services for continuing education and residential care. Despite my best efforts, I went into the meeting feeling rather unprepared, having failed to find out some of the information I needed, however the meeting actually went fairly well. I don't think there was much disagreement about what he actually needs, but I am under no illusion that this is going to be easy and we have to start looking at what will realistically be available to him when he leaves school at 19. But with such savage cuts, and services which are budget-led, who can predict anything?
Then I came home to face the BBC Panorama programme about the abuse of young adults with severe learning difficulties in a specialist care facility in Bristol. I didn't actually watch it, I couldn't, as even what I'd read in advance made me feel sick to the stomach. The media reports, including this in the Daily Mail by the BBC undercover reporter, were more than enough for me.
I'm glad the abuse was exposed and I hope that the programme will lead to improvements in standards in both the inspection procedures and rogue care facilities such as that one. But I think it's also important to hang on to the fact that not all care homes are like that and Casdok has written a very good blog post about the response to Panorama from her own son's care home. As parents and carers we have a huge responsibility to search out the best for our children and to monitor it for as long as we are able, because it's possible that nobody else will give them a voice unless they are in one of the good care homes such as that one.
But when we can no longer do that, then what?
PS And while I'm on the subject of the Panorama expose, you might like to conside signing the petition the National Autistic Society has set up in the aftermath. You can find it here.
Thursday, April 14, 2011
Testosterone
So Hubby is away for a few days. Son 1, as befits a teenager on holiday, has been out a lot, while Son 2 has been calmer and sleeping better. Although he has still woken at around 2am, for the last three mornings he has been happy to go back to bed and drop off to sleep again, to wake at a fairly acceptable hour. He is still jumping on his trampoline, but not with the manic level of activity we've seen over the last few months.
Anyone else spot a pattern here? Perhaps Son 2 feels that just for once he is the top male rather than the bottom of the pile. The level of testosterone in the house as they battle for supremacy is usually overwhelming and I think it has a lot to answer for.
Why, oh why, did I not have daughters?
Anyone else spot a pattern here? Perhaps Son 2 feels that just for once he is the top male rather than the bottom of the pile. The level of testosterone in the house as they battle for supremacy is usually overwhelming and I think it has a lot to answer for.
Why, oh why, did I not have daughters?
Friday, March 11, 2011
Feeling grateful
The last few weeks have been difficult, to say the least. On top of the ongoing financial worries, we are having to start planning for son 2's future, for a change which will be very difficult for all of us. As might be expected in these uncertain times the goalposts keep moving and we fully expect that to be the case for the next two and a half years. As part of the process we have had to open up our home and our lives to the scrutiny of social services, something which is never easy, even though we have nothing to hide and indeed got praise for what we have achieved with son 2.
But sitting here in front of the BBC News Channel, watching pictures of the tsunami sweeping in across Japan and listening to warnings for the whole Pacific area, I realise that for all the difficulties that the UK is facing at the moment, we have so much to be grateful for.
My thoughts are with everyone affected by the earthquake in Japan and the tsunami.
But sitting here in front of the BBC News Channel, watching pictures of the tsunami sweeping in across Japan and listening to warnings for the whole Pacific area, I realise that for all the difficulties that the UK is facing at the moment, we have so much to be grateful for.
My thoughts are with everyone affected by the earthquake in Japan and the tsunami.
Tuesday, February 15, 2011
The saga of the dishwasher
Hubby and I were both brought up in families where there was not much money and even in better times our parents continue to live frugally. Although we were more comfortably off it wasn't until we had an extension built on our small 1920's kitchen that we actually had the space for a dishwasher. The extension meant that we had a separate laundry area and could move the washing machine and bring the tumble dryer in from the garage. We filled the space left by the washing machine with a pretty almond-coloured dishwasher which matched the kitchen units well.
Fast forward about eight years and the dishwasher packed up. This was at a very difficult time in our lives, one which we've moved on from and I don't want to drag up again, other than to say that getting a new dishwasher delivered was simply impossible for a while. Hubby volunteered to wash the dishes (after I said I wouldn't) and that is how it has remained, but the deceased almond-coloured dishwasher still fills the space in the kichen and glares reproachfully at me. From time to time I have broached the subject of a replacement, but Hubby didn't want to spend his redundancy money, worries about the running cost, thinks it's not essential, complains it takes just as long to unload one as to hand wash the dishes. You get the picture.
Last December Caroline ran a giveaway from Appliances Online on her blog and although I normally only enter book giveaways I stuck down a comment. I wasn't one of the lucky ones but it started me thinking about a dishwasher again. I'm tired of the piles of dirty dishes and having to wipe down a wet counter and floor after him, but at the same time I can no longer comfortably stand for long enough to do the job myself and I now have a worrying tendency to drop things. I began to plot how I could gradually find the money and work gently on Hubby again in the meantime.
Then, between Christmas and New Year, disaster struck when our washing machine died in a rather dramatic fashion. Having a disabled child means that a washer is an appliance we really can't do without for more than a day or two, especially since the launderette just down the road was transformed into an Indian takeaway. And our tumble dryer had been becoming less and less efficient, so given the impending VAT hike we replaced both, in a package deal. Gulp.
The dishwasher will just have to wait again.
(As a result of my comment on Caroline's appliance giveaway post the company offered me a small non-electrical incentive for mentioning them on here and although I have no personal experience, I was so impressed by Caroline's enthusiasm for the company's service that I agreed. Anyone leaving a comment with contact link on this post will also have possibility of being contacted by the Appliances Online team.)
Fast forward about eight years and the dishwasher packed up. This was at a very difficult time in our lives, one which we've moved on from and I don't want to drag up again, other than to say that getting a new dishwasher delivered was simply impossible for a while. Hubby volunteered to wash the dishes (after I said I wouldn't) and that is how it has remained, but the deceased almond-coloured dishwasher still fills the space in the kichen and glares reproachfully at me. From time to time I have broached the subject of a replacement, but Hubby didn't want to spend his redundancy money, worries about the running cost, thinks it's not essential, complains it takes just as long to unload one as to hand wash the dishes. You get the picture.
Last December Caroline ran a giveaway from Appliances Online on her blog and although I normally only enter book giveaways I stuck down a comment. I wasn't one of the lucky ones but it started me thinking about a dishwasher again. I'm tired of the piles of dirty dishes and having to wipe down a wet counter and floor after him, but at the same time I can no longer comfortably stand for long enough to do the job myself and I now have a worrying tendency to drop things. I began to plot how I could gradually find the money and work gently on Hubby again in the meantime.
Then, between Christmas and New Year, disaster struck when our washing machine died in a rather dramatic fashion. Having a disabled child means that a washer is an appliance we really can't do without for more than a day or two, especially since the launderette just down the road was transformed into an Indian takeaway. And our tumble dryer had been becoming less and less efficient, so given the impending VAT hike we replaced both, in a package deal. Gulp.
The dishwasher will just have to wait again.
(As a result of my comment on Caroline's appliance giveaway post the company offered me a small non-electrical incentive for mentioning them on here and although I have no personal experience, I was so impressed by Caroline's enthusiasm for the company's service that I agreed. Anyone leaving a comment with contact link on this post will also have possibility of being contacted by the Appliances Online team.)
Thursday, December 23, 2010
A Christmas greeting...
...from Son 2.
We don't really do religion at home, but this year, for some reason, he is obsessively listening to 'Angels We Have Heard On High' by the Westminster Cathedral Choir, which is on an album of Christmas songs I bought some time ago. So I just thought I would share:
This Christmas I shall be keeping in my thoughts the friends who are currently going through very difficult times (there are several of them) and the homeless trying to survive in this weather. I shall feel grateful for everything I still have.
Have the best (white?) Christmas you can, despite the UK weather chaos, and see you all on the other side.
We don't really do religion at home, but this year, for some reason, he is obsessively listening to 'Angels We Have Heard On High' by the Westminster Cathedral Choir, which is on an album of Christmas songs I bought some time ago. So I just thought I would share:
This Christmas I shall be keeping in my thoughts the friends who are currently going through very difficult times (there are several of them) and the homeless trying to survive in this weather. I shall feel grateful for everything I still have.
Have the best (white?) Christmas you can, despite the UK weather chaos, and see you all on the other side.
Friday, December 17, 2010
A quick round-up
So Christmas is almost upon us. I'm busy cramming goodies into the supermarket order which will be delivered mid-week and praying that two Amazon parcels arrive on time. As usual we will have a low-key holiday, just the four of us. Son 2, in common with many autistic children, just doesn't 'do' Christmas, apart from the chocolates.
The snow has scuppered some plans. Son 1 was planning to travel to the Westcountry today to visit the grandparents on his own, but in the end we decided that there were too many risks...of train cancellations stranding him there and icy roads for my elderly father to drive on to pick him up from and return him to the station. He was originally booked on a 12.20pm train and at around midday it snowed quite heavily here, so I think we made the right decision and my father sounded relieved.
Writing is on hold, and has been for a few weeks, while I try to get some health niggles sorted. But I have been reading and greatly enjoyed Sister by Rosamund Lupton and One Moment, One Morning by Sarah Rayner.
In other news, I correctly predicted the first to third places in The X Factor, as evidenced in the comments to Caroline's blog post at the start of the series...
The snow has scuppered some plans. Son 1 was planning to travel to the Westcountry today to visit the grandparents on his own, but in the end we decided that there were too many risks...of train cancellations stranding him there and icy roads for my elderly father to drive on to pick him up from and return him to the station. He was originally booked on a 12.20pm train and at around midday it snowed quite heavily here, so I think we made the right decision and my father sounded relieved.
Writing is on hold, and has been for a few weeks, while I try to get some health niggles sorted. But I have been reading and greatly enjoyed Sister by Rosamund Lupton and One Moment, One Morning by Sarah Rayner.
In other news, I correctly predicted the first to third places in The X Factor, as evidenced in the comments to Caroline's blog post at the start of the series...
Saturday, September 04, 2010
Busy, busy, busy
Last week just rushed by too.
On Wednesday Son 2 returned to school, but this time to the Further Education unit on a new site. He'd been well prepared by the school, who also sent home a transition book for us to look at together over the summer. He seemed a little apprehensive just before the transport arrived, but all was well when we found his old escort had been transferred onto this new route. There were big smiles all round.
He seemed happy when he returned in the evening and the good mood continued in the following days, so we can only assume that all is well in Son 2's world. It is so hard when they can't really tell you what goes on.
Son 1 had two induction days at his new college and work starts in earnest on Monday. He showed me a photo on his phone of the view from the classroom window, this time he looks out onto fields rather than a tube station. There is a fair amount of travelling to get there, but the London Underground app on his new BlackBerry will help with that.
And finally, and most excitingly, my Kindle arrived! An early font problem induced panic, but eventually I discovered how to reset the firmware and all is well again. I will report back in more detail next week when I've explored all the features...
On Wednesday Son 2 returned to school, but this time to the Further Education unit on a new site. He'd been well prepared by the school, who also sent home a transition book for us to look at together over the summer. He seemed a little apprehensive just before the transport arrived, but all was well when we found his old escort had been transferred onto this new route. There were big smiles all round.
He seemed happy when he returned in the evening and the good mood continued in the following days, so we can only assume that all is well in Son 2's world. It is so hard when they can't really tell you what goes on.
Son 1 had two induction days at his new college and work starts in earnest on Monday. He showed me a photo on his phone of the view from the classroom window, this time he looks out onto fields rather than a tube station. There is a fair amount of travelling to get there, but the London Underground app on his new BlackBerry will help with that.
And finally, and most excitingly, my Kindle arrived! An early font problem induced panic, but eventually I discovered how to reset the firmware and all is well again. I will report back in more detail next week when I've explored all the features...
Friday, August 27, 2010
Of coffee and exam results
An exciting week has just flown past.
On Monday I met lovely Miriam for a coffee. Miriam and I discovered each other in the writerly blogosphere during the last year and I was delighted when she emailed recently to say she would be passing through London whilst over here on a holiday from Israel. I was particularly thrilled because Miriam often blogs about the social anxiety from which she suffers, so I knew that for her making the suggestion to meet up was a Big Thing.
We met at the impressive new St Pancras International station. Not the most exciting location perhaps, but convenient for both of us. And Miriam needn't have worried, as I was in one of my most chatty moods as we sat in the Costa Coffee situated in the row of smart little shops. I probably bored her to death, but I hope we will be able to meet again in the future.
On Tuesday GCSE results came out. Son 1 had taken just one exam, but his preferred college placement and course for this year was dependent upon a grade of at least C and he wasn't sure he'd done it (he already had the required result in his BETEC First Diploma). He was working on Tuesday and couldn't get to college to receive his result in person, so we had to wait anxiously for the postman on Wednesday. The news was good and yesterday he enrolled at his first choice college for a BETEC National Extended Diploma in IT, which is the equivalent of taking three A levels. He has chosen not to go back to our local college, even though academically he did well there last year, and will be facing a daily commute, albeit against the rush hour mayhem. He'll just have to learn to get up earlier.
(The picture is of the statue at St Pancras which, stupidly, I forgot to go upstairs to look at. Next time...)
Friday, August 20, 2010
Lows and highs
The past week was seriously weird, a true rollercoaster.
A fatal traffic accident at the end of our road on Monday created drama and left everyone feeling shaken. In addition two friends have been seriously ill in hospital. Different hospitals and different reasons, but each another reminder of my own mortality.
It's just over a year since my diagnosis and I've been struggling with the anniversary. I'm no worse than I was this time last year, I'm actually significantly better, as I was in the throes of a major relapse back then. Looking at the overall picture there has been little significant deterioration. I am slowly learning to recognise my fluctuating symptoms and to listen to them, to accept my limitations. But it's not always easy.
On the upside, I've been out to see quite a few friends. Although Son 1 wasn't awaiting A level results, I've enjoyed hearing of his old schoolfriends getting university places. Son 1 is now motivated and doing well in his education, his turn will hopefully come. In the meantime he is working hard in a very worthwhile holiday and weekend job which he not only enjoys, but will look good on future applications.
Son 2 has been quite relaxed and enjoying the holiday, especially his playscheme sessions. We are now starting to gently remind him about his forthcoming transition to the further education unit and keeping our fingers tightly crossed.
A fatal traffic accident at the end of our road on Monday created drama and left everyone feeling shaken. In addition two friends have been seriously ill in hospital. Different hospitals and different reasons, but each another reminder of my own mortality.
It's just over a year since my diagnosis and I've been struggling with the anniversary. I'm no worse than I was this time last year, I'm actually significantly better, as I was in the throes of a major relapse back then. Looking at the overall picture there has been little significant deterioration. I am slowly learning to recognise my fluctuating symptoms and to listen to them, to accept my limitations. But it's not always easy.
On the upside, I've been out to see quite a few friends. Although Son 1 wasn't awaiting A level results, I've enjoyed hearing of his old schoolfriends getting university places. Son 1 is now motivated and doing well in his education, his turn will hopefully come. In the meantime he is working hard in a very worthwhile holiday and weekend job which he not only enjoys, but will look good on future applications.
Son 2 has been quite relaxed and enjoying the holiday, especially his playscheme sessions. We are now starting to gently remind him about his forthcoming transition to the further education unit and keeping our fingers tightly crossed.
Thursday, July 15, 2010
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...
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...
Monday, July 12, 2010
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...
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...
Wednesday, July 07, 2010
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...
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...
Friday, July 02, 2010
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.
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.
Wednesday, June 30, 2010
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.
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.
Monday, June 28, 2010
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 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.
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