Oh dear, another week has passed with no blog post. I've been busy catching up after the half term and there was really nothing to say.
I may have forgotten to tell you that I finished the OU Introduction to Counselling course a few weeks ago. The official results will be out later this month but, as there was no exam element, I already know I will have passed.
It was an interesting course and parts of it will be very relevant to my voluntary work at the support group coffee mornings I have helped run for many years. Although we are all volunteers, we represent a major national charity and therefore we have to be as professional as possible. The listening skills learned on a counselling course, even a largely academic distance learning course as mine was, are invaluable. It is not rocket science, these are just the basic communication skills that many of us will have been taught as part of employment over the years, but a refresher is always timely.
We don't pretend to be trained counsellors, we are not. In any case, our branch can also offer a proper counselling service with a professional counsellor for those who need it. But we have to be able to listen to parents who are often distraught after receiving a diagnosis of autism for their child. We have to be able to offer practical information without seeming patronising. We have to forget that we have answered the same questions so many times in the past and not lose patience. We have to remember not to keep bringing the conversation back to our own child. We have to make our members, especially newcomers, feel welcome and to do so we have to gently discourage cliques and attention hogging.
It can be hard to support others when you are going through difficult times yourself. The experience in our small team is that at any particular time at least one of us will be dealing with some sort of family crisis or transition. At these times we may step back and let others cover to allow a breathing space. But because we believe we offer a valuable service, most of us return. I took last year off and just attended the meetings to receive support myself, but I'm back doing more this year.
If I can help just one other parent, it is worth the effort.
Thursday, March 05, 2009
Thursday, February 26, 2009
Following on ...
...from yesterday, I like this article by Libby Purves.
School was back today, after a week of half term and three staff training days. So how did I arrange to spend the day? Attending a National Autistic Society branch committee meeting this morning and giving a talk to parents of newly diagnosed children this evening!
School was back today, after a week of half term and three staff training days. So how did I arrange to spend the day? Attending a National Autistic Society branch committee meeting this morning and giving a talk to parents of newly diagnosed children this evening!
Wednesday, February 25, 2009
Brightening a sad day
Today has been a sad one in the world of special needs and I would like to send my condolences to David and Samantha Cameron on the death of their beautiful son Ivan. The loss of a child is something no parent should have to bear and as someone said on an internet forum today, we will all be hugging our children a little closer tonight.
But the day has been brightened a little by receiving this Best Blog Thinker award from Sue Guiney. Thanks Sue!
Now it is my turn to pass it on. As my blog is about both special needs and writing I would like to pass it on to bloggers representing both areas. So firstly I give it to Casdok at Mother of Shrek, for probably the best blog on autism I have read. Secondly I would like to give it to Graeme K. Talboys at grumblog, whose wisdom has influenced my writing over the last couple of years more than he probably realises.
But the day has been brightened a little by receiving this Best Blog Thinker award from Sue Guiney. Thanks Sue!
Now it is my turn to pass it on. As my blog is about both special needs and writing I would like to pass it on to bloggers representing both areas. So firstly I give it to Casdok at Mother of Shrek, for probably the best blog on autism I have read. Secondly I would like to give it to Graeme K. Talboys at grumblog, whose wisdom has influenced my writing over the last couple of years more than he probably realises.
Tuesday, February 24, 2009
When is inclusion not inclusion?
According to the Daily Mail, the BBC has received nine complaints about new CBeebies presenter Cerrie Burnell, who has part of one arm missing from a birth defect. The complaining parents apparently claim that she frightens their children, but what are they doing to take this wonderful opportunity to educate their children in diversity and disability? Nothing, it appears, except pass on their own prejudices.
Disability is a fact of life. For far too many years it was hidden away, but we have moved way beyond that. The education system in the UK positively encourages integration. In any school in the country you will find children with disabilities, both obvious and hidden. So these toddlers who are being 'frightened' will encounter disability elsewhere soon enough. Children are very accepting, they usually only need the simplest of explanations that another is different. It is so often the adults who are not understanding.
The BBC does a good job of showing disability, from Something Special and Balamory on CBeebies, through various mainstream disabled journalists and presenters...Frank Gardner and Gary Donoghue on the BBC news, Ade Adepitan on CBBC to name just a few. None of these appear to be there as a form of PC tokenism, but rather on account of their ability to do the job well. I know, from having met staff who run the CBeebies website, that they also have a strong commitment to make it as disability friendly as possible and welcome suggestions to improve it.
Back in the 1960's my father, as Head of a tiny, three teacher village school, appointed a teacher with one arm. He realised right from the start that there might possibly be one or two things this man would find hard. But he had a track record as a teacher, he was even able to teach football which my dyspraxic father couldn't, in fact there was very little he couldn't manage. The children were not in the least frightened or traumatised and it must have taught the children of that isolated rural community a very important lesson on diversity.
The BBC must continue to show and praise disability. Perhaps it should also make some programmes to educate those ignorant parents too.
Update: The BBC has a very perceptive piece on the whole storm in a teacup here.
Disability is a fact of life. For far too many years it was hidden away, but we have moved way beyond that. The education system in the UK positively encourages integration. In any school in the country you will find children with disabilities, both obvious and hidden. So these toddlers who are being 'frightened' will encounter disability elsewhere soon enough. Children are very accepting, they usually only need the simplest of explanations that another is different. It is so often the adults who are not understanding.
The BBC does a good job of showing disability, from Something Special and Balamory on CBeebies, through various mainstream disabled journalists and presenters...Frank Gardner and Gary Donoghue on the BBC news, Ade Adepitan on CBBC to name just a few. None of these appear to be there as a form of PC tokenism, but rather on account of their ability to do the job well. I know, from having met staff who run the CBeebies website, that they also have a strong commitment to make it as disability friendly as possible and welcome suggestions to improve it.
Back in the 1960's my father, as Head of a tiny, three teacher village school, appointed a teacher with one arm. He realised right from the start that there might possibly be one or two things this man would find hard. But he had a track record as a teacher, he was even able to teach football which my dyspraxic father couldn't, in fact there was very little he couldn't manage. The children were not in the least frightened or traumatised and it must have taught the children of that isolated rural community a very important lesson on diversity.
The BBC must continue to show and praise disability. Perhaps it should also make some programmes to educate those ignorant parents too.
Update: The BBC has a very perceptive piece on the whole storm in a teacup here.
Monday, February 23, 2009
Oscar, Oscar x 8
What a fantastic evening for the Brits at the Academy Awards last night. Success at last for Kate Winslet, but most of all Slumdog Millionaire sweeping the board.
Although I've not seen the movie we have a special interest, because Dev Patel, one of the stars, is a local lad who went to the same schools as son 1. What an amazing role model, showing that an ordinary kid can achieve huge success, just a couple of years after leaving school.
In other news, Hubby and son 1 are both ill with chest infections, and in Hubby's case a sinus infection too. We even had to take son 1 to the out of hours doctor at the weekend, as he has had so many chest infections in the last six months and had hardly recovered from the last severe one. I'm sneezing and son 2 has yet to succumb...
Wednesday, February 18, 2009
Family planning
So how do you decide how many children to have?
A report on the BBC website suggests that parents should take the future of our planet into consideration when planning the size of their family.
But that is probably not top of most people's agenda. The majority of my friends have one or two children, either by choice or medical necessity. But I have other friends and acquaintances with three, four or even five kids. They do say that after the second child, another makes little difference.
I loved having a baby in the house and I have to admit that after son 2 was born I instinctively wanted another. But Hubby was adamant that we stick to two, as we'd always agreed. There were of course many good reasons for this. A third child would have necessitated a bigger car, a bigger house, a bigger mortgage, not to mention increased day to day running costs of another to feed and clothe.
But above all there were other practical reasons I could not ignore. I knew from a very early age that all was not well with son 2. By the time we might have been thinking about another pregnancy, we were already caught up in assessments and appointments and his behaviour at home would have endangered a baby. So another pregnancy would have to be postponed until he started school, by which time I would not be far off 40. Although genetic counselling told us the risk of another child with autism was only around 6%, a 40 year old who has already had two premature births is not a good prospect for a healthy full term delivery.
It was actually the fear of another premature birth which put me off the idea for good, because I knew I could not go through the trauma of a critically sick newborn again. It is only recently that I have felt able to write about that time of my life. Some of you may have seen my poem here. And I have decided to do a piece of life writing on son 1's earliest days for my next OU assignment.
I may have conquered those baby demons at last.
A report on the BBC website suggests that parents should take the future of our planet into consideration when planning the size of their family.
But that is probably not top of most people's agenda. The majority of my friends have one or two children, either by choice or medical necessity. But I have other friends and acquaintances with three, four or even five kids. They do say that after the second child, another makes little difference.
I loved having a baby in the house and I have to admit that after son 2 was born I instinctively wanted another. But Hubby was adamant that we stick to two, as we'd always agreed. There were of course many good reasons for this. A third child would have necessitated a bigger car, a bigger house, a bigger mortgage, not to mention increased day to day running costs of another to feed and clothe.
But above all there were other practical reasons I could not ignore. I knew from a very early age that all was not well with son 2. By the time we might have been thinking about another pregnancy, we were already caught up in assessments and appointments and his behaviour at home would have endangered a baby. So another pregnancy would have to be postponed until he started school, by which time I would not be far off 40. Although genetic counselling told us the risk of another child with autism was only around 6%, a 40 year old who has already had two premature births is not a good prospect for a healthy full term delivery.
It was actually the fear of another premature birth which put me off the idea for good, because I knew I could not go through the trauma of a critically sick newborn again. It is only recently that I have felt able to write about that time of my life. Some of you may have seen my poem here. And I have decided to do a piece of life writing on son 1's earliest days for my next OU assignment.
I may have conquered those baby demons at last.
Monday, February 16, 2009
Babies having babies
A lot has been written over the last few days about the baby born to a fifteen year old mother and allegedly fathered by a thirteen year old. Most people, quite rightly, find the whole scenario rather shocking.
Teenage pregnancy is nothing new of course. I can well remember the scandal in the very small town where I grew up, when one of my classmates dropped out of school at fifteen to have a baby. The UK currently has the highest rate of teenage pregnancy in Western Europe, so something is going wrong somewhere.
What I have found so scary about this particular case is that the girl's parents apparently allowed boys to sleep with her, in their home, when she was clearly legally under age. Not just one, but allegedly at least three.
Now we can't always control what our teenagers are doing outside the house, but we can within our own walls. I don't claim to be a perfect parent, indeed I doubt that one exists. But parents need to know how to set and enforce boundaries, otherwise how else do kids learn to be responsible members of society?
There are many parenting courses available, in fact before Christmas I attended one on parenting teenagers, run by a local voluntary organisation. The sad thing was that everyone who attended the course was in fact already a good parent, simply striving to be even better. The sort of parents who really need such help wouldn't attend, however much social workers or other agencies refer them.
Next week I am going to be speaking to parents on a course based around understanding autism. The same thing applies, the parents who attend the course are the good ones, who want to learn how to understand and help their child. But what about the others, and how might a young teenager cope with a child with autism?
Teenage pregnancy is nothing new of course. I can well remember the scandal in the very small town where I grew up, when one of my classmates dropped out of school at fifteen to have a baby. The UK currently has the highest rate of teenage pregnancy in Western Europe, so something is going wrong somewhere.
What I have found so scary about this particular case is that the girl's parents apparently allowed boys to sleep with her, in their home, when she was clearly legally under age. Not just one, but allegedly at least three.
Now we can't always control what our teenagers are doing outside the house, but we can within our own walls. I don't claim to be a perfect parent, indeed I doubt that one exists. But parents need to know how to set and enforce boundaries, otherwise how else do kids learn to be responsible members of society?
There are many parenting courses available, in fact before Christmas I attended one on parenting teenagers, run by a local voluntary organisation. The sad thing was that everyone who attended the course was in fact already a good parent, simply striving to be even better. The sort of parents who really need such help wouldn't attend, however much social workers or other agencies refer them.
Next week I am going to be speaking to parents on a course based around understanding autism. The same thing applies, the parents who attend the course are the good ones, who want to learn how to understand and help their child. But what about the others, and how might a young teenager cope with a child with autism?
Thursday, February 12, 2009
Write what you know...
...is the conventional wisdom.
I know that my own writing is definitely strongest when it is based on this principle, because even when fictionalising the material the emotional truth shines through.
I am now faced with deciding what to write for the next OU assignment, which is a very big one in terms of the overall assessment marks. We can choose from fiction, life writing or poetry. So having discounted poetry as far too risky, I am left with a choice of the other two.
I am lucky enough to have experienced plenty of possible material in my life. But do I go with life writing or do I create fiction from my own experience?
Answers on a postcard please.
I know that my own writing is definitely strongest when it is based on this principle, because even when fictionalising the material the emotional truth shines through.
I am now faced with deciding what to write for the next OU assignment, which is a very big one in terms of the overall assessment marks. We can choose from fiction, life writing or poetry. So having discounted poetry as far too risky, I am left with a choice of the other two.
I am lucky enough to have experienced plenty of possible material in my life. But do I go with life writing or do I create fiction from my own experience?
Answers on a postcard please.
Monday, February 09, 2009
A nasty shock
The snow last week seems to have done something to my brain. Or my memory.
I looked on the calendar this morning and realised, to my horror, that next week is half term. Now it only seems a few days ago that son 2 went back to school after Christmas and of course having him home for three days last week seemed almost like a holiday anyway, certainly to him. So, another week off. And three inset days immediately afterwards.
I've got piles of work to do...OU assignments, the novel, some additional voluntary work and some other important stuff. And very little time to do it.
Time to stick my head in the sand, I think.
I looked on the calendar this morning and realised, to my horror, that next week is half term. Now it only seems a few days ago that son 2 went back to school after Christmas and of course having him home for three days last week seemed almost like a holiday anyway, certainly to him. So, another week off. And three inset days immediately afterwards.
I've got piles of work to do...OU assignments, the novel, some additional voluntary work and some other important stuff. And very little time to do it.
Time to stick my head in the sand, I think.
Friday, February 06, 2009
Lisa - an inspiration
I've blogged before about how the early death of one of my dearest friends from cancer gave me the motivation to start writing, to try to realise my dreams before it is too late.
Now I have another reason. Yesterday Lisa Ratcliffe, one of the Novel Racers, lost her exceptionally brave fight against cancer.
Unlike many of the group I had not had the opportunity to meet Lisa in person, something I regret very much. But I regularly followed her inspirational blog. I often lurked because, during a time of my own family crises, I just could not always find the right words to support her as she tackled her illness with such optimism, still finding time to enjoy life to the full. That is something I also regret, though Lisa knew my thoughts were with her.
In her final blog post, just a week ago, Lisa sent out a vital message: writers - write! It is one I intend to follow.
A JustGiving page, to raise money for Cancer Research UK in Lisa's name, has been set up here.
Now I have another reason. Yesterday Lisa Ratcliffe, one of the Novel Racers, lost her exceptionally brave fight against cancer.
Unlike many of the group I had not had the opportunity to meet Lisa in person, something I regret very much. But I regularly followed her inspirational blog. I often lurked because, during a time of my own family crises, I just could not always find the right words to support her as she tackled her illness with such optimism, still finding time to enjoy life to the full. That is something I also regret, though Lisa knew my thoughts were with her.
In her final blog post, just a week ago, Lisa sent out a vital message: writers - write! It is one I intend to follow.
A JustGiving page, to raise money for Cancer Research UK in Lisa's name, has been set up here.
Wednesday, February 04, 2009
Snow, snow, go away...
The sun is shining today, as it was yesterday. Quite a lot of the snow has melted, but there is still plenty left.The side roads and pavements are treacherously icy.
Life in London, however, is getting back to normal. The buses got back on the road yesterday. The tube lines were all running a good service when I checked this morning. After taking the tube yesterday, Hubby decided to drive today and I presume he got there, as I haven't heard otherwise. He needs to be there as the credit crunch is biting the business very hard, indeed there are very real fears it may not survive this month.
Son 1 is back at college. The college officially opened late morning yesterday, he went in specially for one class, only to find it cancelled. Today he hasn't come home, so I guess the class is running.
Son 2 is still at home. We will hear today whether his school is reopening tomorrow. There are special circumstances surrounding the closure of his specialist school...extra health and safety concerns regarding severely autistic kids with no sense of danger and also the fact that most of them have long bus/taxi journeys to get to the school from all over London and the Home Counties. We live 12 miles away and are probably one of the families closest to the school.
So it is a strange week. I should be writing, but can't with son 2 to keep a close eye on. I am too scared to drive to the supermarket in the evening, but thankfully just a couple of weeks ago a Tesco Express opened within walking distance.
They say we may get more snow in the next few days. I just hope normal service will be resumed soon.
Update: The school has just called to say that it has now been risk assessed, so he can go back tomorrow, as long as the council runs the transport. If it's not safe for the school bus, then it's not safe for me to attempt either!
Monday, February 02, 2009
Snow
So it rarely snows in London. But when it does, the city grinds to a halt.
This was the scene outside my front door at about 8am this morning. Son 1's college is closed today. Son 2's school is closed for at least three days. Hubby is at home too, because it is not safe to drive the 14 miles into Central London on what is a very hilly route, the tube station is shut and there are no buses running in the whole of London.
And spotted in our garden early this morning was a fox, knee deep in snow and looking very pissed off...
Thursday, January 29, 2009
A study interlude
Yet again more than a week has passed. But I have been busy, honest.
In that time two OU assignments have been written and submitted. Then on Saturday I attended a day school for the writing course which was stimulating and felt far too short. My mind is now buzzing with ideas for our final big piece of assessed work. Most of those who attended on Saturday met up again on Monday to continue informally. Sadly I couldn't make it, but they kindly looked over my work and fed back to me by email
I have also been glued to the BBC new channel, Obama watching. So far, so good. The same can be said for Son 1's college attendance.
Three notable things:
1. The death of John Updike has provoked a flurry of tributes. I haven't read any of his novels, though I do remember really enjoying a story I read relatively recently. I think it was online but I can't remember where, so that's not much help. Sorry.
2. I have rediscovered my Nintendo DS which had laid dormant for may months. I enjoy doing word puzzles on it but I also now have this. Not a Sony reader, sure, but actually quite readable in small doses.
3. Another birthday has passed, without too much fuss.
In that time two OU assignments have been written and submitted. Then on Saturday I attended a day school for the writing course which was stimulating and felt far too short. My mind is now buzzing with ideas for our final big piece of assessed work. Most of those who attended on Saturday met up again on Monday to continue informally. Sadly I couldn't make it, but they kindly looked over my work and fed back to me by email
I have also been glued to the BBC new channel, Obama watching. So far, so good. The same can be said for Son 1's college attendance.
Three notable things:
1. The death of John Updike has provoked a flurry of tributes. I haven't read any of his novels, though I do remember really enjoying a story I read relatively recently. I think it was online but I can't remember where, so that's not much help. Sorry.
2. I have rediscovered my Nintendo DS which had laid dormant for may months. I enjoy doing word puzzles on it but I also now have this. Not a Sony reader, sure, but actually quite readable in small doses.
3. Another birthday has passed, without too much fuss.
Tuesday, January 20, 2009
Notes to Obama: Maya Angelou
I don't usually post twice in a day but I have just found this and, like the writer herself, it is inspirational.
Positivity
Yesterday was supposed to be 'Blue Monday', allegedly the most miserable day of the year. In a world which is teetering on the edge of financial chaos, where people are losing jobs every day, the title seemed very apt.
I was brought up by parents who are prone to anxiety and negativity and I know I have inherited a tendency towards those traits too. However much I try to be a positive person, I can never quite stop the negative thoughts encroaching.
But today there are things to celebrate.
Barack Obama is to be inaugurated as the first black President of America. The world has high hopes. Even though it is unlikely he will be able to meet all those expectations, just the fact that history is being made is enough to start with. He has a huge job ahead of him, but his calm demeanour suggests he may just be up to it.
On a more personal level, yesterday Son 1 started college, the first time he has been able to access formal education for three years. Right up to the last minute I wasn't sure he would manage it, he had hardly slept at all for two weeks due to anxiety. But when the moment came he seemed quite calm, he went off on his own and we are very proud of him. Another small step on the way to reaching his goal.
If you need proof that staying calm and positive is good for you, here it is.
I'm going to try hard to follow the advice.
Friday, January 16, 2009
Computer says no
I had a true Little Britain moment earlier this week.
Last summer we lost our child benefit for son 1, because he was over 16 and attending a mental health provision with no educational element, rather than being back in school or college. I suppose he could have claimed incapacity benefit, but we didn't suggest it, not wanting him to start off adult life feeling that he has no need to study or support himself. We were very clear that we would claim child benefit again as soon as he went back to education.
He is due to start college next Monday so this week I phoned the Child Benefit office to give them the information and ask for the benefit to be reinstated from next week.
'Oh I can't take the details now. Phone back next week when he starts.'
'Can't you just take the information now, as I am on the phone?'
'The computer won't let me enter it this week. Have you got all the course details?'
'Yes, here right in front of me.'
'You'll have to phone back next week please. I can't enter them on the computer now.'
Argh!
Three notable things:
1. A lovely dinner out last night.
2. Knowing that my car is safely through its MOT for another year.
3. Catching up with an old friend today and arranging to meet another very soon.
Last summer we lost our child benefit for son 1, because he was over 16 and attending a mental health provision with no educational element, rather than being back in school or college. I suppose he could have claimed incapacity benefit, but we didn't suggest it, not wanting him to start off adult life feeling that he has no need to study or support himself. We were very clear that we would claim child benefit again as soon as he went back to education.
He is due to start college next Monday so this week I phoned the Child Benefit office to give them the information and ask for the benefit to be reinstated from next week.
'Oh I can't take the details now. Phone back next week when he starts.'
'Can't you just take the information now, as I am on the phone?'
'The computer won't let me enter it this week. Have you got all the course details?'
'Yes, here right in front of me.'
'You'll have to phone back next week please. I can't enter them on the computer now.'
Argh!
Three notable things:
1. A lovely dinner out last night.
2. Knowing that my car is safely through its MOT for another year.
3. Catching up with an old friend today and arranging to meet another very soon.
Thursday, January 15, 2009
The Daily Mail strikes again
The Mail loves to write about autism. Sometimes their articles are well balanced but more often they are stirring up even more hysteria over the MMR or promoting the latest 'cure'.
A friend has just led me to this. The article itself and the comments show what a wide range of views there are.
No, having an autistic child does not ruin your life. It profoundly changes it, certainly, in ways you might never have expected. You often do have to lower your expectations of what your lifestyle might be. But it is not that usual for both parents to have to give up work to look after the child. There is help out there in the form of specialist schools, many of which are residential, respite care from social services, foster care...
But these things don't just fall into your lap. Parents have to be proactive, above all they have to fight for what they need. It's hard when you are worn out, but it is worth the effort. When Son 2 was small I knew that if I could just get him into the right school our lives would be so much easier. With help I fought, I won, we have been supported. I started to work voluntarily for our local autism charity to help develop playschemes and other services, all of which we as a family have benefited from. My son hasn't ruined his grandparents lives, they live far away so rarely see him and we don't make demands of them. My husband has always worked, usually 12 hours a day, to support us and we deal with this on our own.
Of course every child on the autistic spectrum is different because they are a fascinating blend of varying degrees of autism with their underlying personality. For example my son displays quite different traits to Casdok's and is much less able than Crystal Jigsaw's daughter, yet we have all had to fight for what they need. There is no child who cannot be found care and an education, even if it means moving out of the family home. Often difficult autistic children blossom in the consistency of the 24 hour curriculum in a residential setting which understands their needs. Others do better at home. There is no right or wrong.
There are many journalists and writers out there who write about their personal experiences of parenting autism. Nick Hornby, his ex-wife Virginia Bovell, Charlotte Moore and many more. When they write they are honest, but above all their love for their children shines through, just as it does on so many blogs.
This piece, however, is written by an outsider, someone who just sees a child as a burden, as a barrier to a certain way of life. A child who, if a test had been available, should have been aborted.
(PS I haven't written yet about Simon Baron-Cohen's view that a antenatal test for autism is on the way, because I'm not really sure how I feel about it. Watch this space.)
A friend has just led me to this. The article itself and the comments show what a wide range of views there are.
No, having an autistic child does not ruin your life. It profoundly changes it, certainly, in ways you might never have expected. You often do have to lower your expectations of what your lifestyle might be. But it is not that usual for both parents to have to give up work to look after the child. There is help out there in the form of specialist schools, many of which are residential, respite care from social services, foster care...
But these things don't just fall into your lap. Parents have to be proactive, above all they have to fight for what they need. It's hard when you are worn out, but it is worth the effort. When Son 2 was small I knew that if I could just get him into the right school our lives would be so much easier. With help I fought, I won, we have been supported. I started to work voluntarily for our local autism charity to help develop playschemes and other services, all of which we as a family have benefited from. My son hasn't ruined his grandparents lives, they live far away so rarely see him and we don't make demands of them. My husband has always worked, usually 12 hours a day, to support us and we deal with this on our own.
Of course every child on the autistic spectrum is different because they are a fascinating blend of varying degrees of autism with their underlying personality. For example my son displays quite different traits to Casdok's and is much less able than Crystal Jigsaw's daughter, yet we have all had to fight for what they need. There is no child who cannot be found care and an education, even if it means moving out of the family home. Often difficult autistic children blossom in the consistency of the 24 hour curriculum in a residential setting which understands their needs. Others do better at home. There is no right or wrong.
There are many journalists and writers out there who write about their personal experiences of parenting autism. Nick Hornby, his ex-wife Virginia Bovell, Charlotte Moore and many more. When they write they are honest, but above all their love for their children shines through, just as it does on so many blogs.
This piece, however, is written by an outsider, someone who just sees a child as a burden, as a barrier to a certain way of life. A child who, if a test had been available, should have been aborted.
(PS I haven't written yet about Simon Baron-Cohen's view that a antenatal test for autism is on the way, because I'm not really sure how I feel about it. Watch this space.)
Wednesday, January 14, 2009
Hmm...
So a Labour MP says that dyslexia is 'a cruel fiction leading to crime'?
Son 1 has relatively mild, but very real, specific learning difficulties, mainly affecting his ability to write, spell and generally express himself on paper. I had raised queries for many years before two teachers at middle school finally backed me up and agreed there was a problem. So we had him privately tested and a couple of years of extra input, both in school and with a specialist private tutor, helped enormously. But he is still not confident with writing and his ability in this area does not reflect his overall level of intelligence and functioning.
High school didn't recognise his need and took him off the special needs register. His school career subsequently went belly up, though not entirely from that cause. He is not a criminal, in fact quite the opposite, his anxiety makes him exceptionally law abiding. I do, however, know other children with dyslexia who have got themselves into trouble, largely because they too have been badly failed by their teachers and became totally disenchanted with education.
Son 1 started reception class in 1996. The Labour government came into power in 1997. An own goal?
Three notable things:
1. I am constantly amazed by how I see all of life through my internet contacts.
2. The slow job of decluttering has begun. Bags of clothing are being sorted for the charity shop.
3. Son 1 has taken a temporary part time job helping on a scheme for younger teenagers who are experiencing difficulties in life. We are so proud of him.
Son 1 has relatively mild, but very real, specific learning difficulties, mainly affecting his ability to write, spell and generally express himself on paper. I had raised queries for many years before two teachers at middle school finally backed me up and agreed there was a problem. So we had him privately tested and a couple of years of extra input, both in school and with a specialist private tutor, helped enormously. But he is still not confident with writing and his ability in this area does not reflect his overall level of intelligence and functioning.
High school didn't recognise his need and took him off the special needs register. His school career subsequently went belly up, though not entirely from that cause. He is not a criminal, in fact quite the opposite, his anxiety makes him exceptionally law abiding. I do, however, know other children with dyslexia who have got themselves into trouble, largely because they too have been badly failed by their teachers and became totally disenchanted with education.
Son 1 started reception class in 1996. The Labour government came into power in 1997. An own goal?
Three notable things:
1. I am constantly amazed by how I see all of life through my internet contacts.
2. The slow job of decluttering has begun. Bags of clothing are being sorted for the charity shop.
3. Son 1 has taken a temporary part time job helping on a scheme for younger teenagers who are experiencing difficulties in life. We are so proud of him.
Thursday, January 08, 2009
Dementia
So, I now have a mother-in-law with diagnosed Alzheimers and a mother with some sort of early dementia, as yet unspecified.
My father accompanied my mum to the GP on Tuesday and discovered that what my mother had reported back from a phone conversation before Christmas, ie that her difficulties would not get any worse, is incorrect. Was that incomprehension ( most likely) or denial?
Anyway they are going to need some support, albeit from a distance. My dad is, quite correctly, wanting my mum to maintain her routines and keep as independent as possible, but it is clear that the deficits she has suffered in language skills make social communication and even things like shopping difficult at times.
Now that is when the penny dropped. Her difficulties now are not so different to autism and therefore the sort of strategies we all use for our autistic kids, such as regular routines, visual timetables and alternative means of communication can all come into play. She occasionally gets very confused about what day it is, so I just suggested that they actively cross each day off on a calendar, so that the next morning she can see clearly the day of the week. Simple, yes. Obvious, well yes, but perhaps not if you are in the middle of it. My dad found a suitable calendar yesterday and started straight away. I think he will need to be bringing his skills as a former primary school teacher back into practice. Let's hope it helps.
If anyone has experience or tips on helping a relative with dementia, I'd be really interested to hear.
Three notable things:
1. The GP said Son 1 has 'the worst chest infection he had heard for a long time'. Strong antibiotics and inhalers were prescribed and seem to be starting to work.
2. Pressing on with the novel, slowly but surely. The words are coming in short bursts rather than a steady flow.
3. A much better mark for my second OU writing assignment, a film script. Hooray!
My father accompanied my mum to the GP on Tuesday and discovered that what my mother had reported back from a phone conversation before Christmas, ie that her difficulties would not get any worse, is incorrect. Was that incomprehension ( most likely) or denial?
Anyway they are going to need some support, albeit from a distance. My dad is, quite correctly, wanting my mum to maintain her routines and keep as independent as possible, but it is clear that the deficits she has suffered in language skills make social communication and even things like shopping difficult at times.
Now that is when the penny dropped. Her difficulties now are not so different to autism and therefore the sort of strategies we all use for our autistic kids, such as regular routines, visual timetables and alternative means of communication can all come into play. She occasionally gets very confused about what day it is, so I just suggested that they actively cross each day off on a calendar, so that the next morning she can see clearly the day of the week. Simple, yes. Obvious, well yes, but perhaps not if you are in the middle of it. My dad found a suitable calendar yesterday and started straight away. I think he will need to be bringing his skills as a former primary school teacher back into practice. Let's hope it helps.
If anyone has experience or tips on helping a relative with dementia, I'd be really interested to hear.
Three notable things:
1. The GP said Son 1 has 'the worst chest infection he had heard for a long time'. Strong antibiotics and inhalers were prescribed and seem to be starting to work.
2. Pressing on with the novel, slowly but surely. The words are coming in short bursts rather than a steady flow.
3. A much better mark for my second OU writing assignment, a film script. Hooray!
Saturday, January 03, 2009
Jett Travolta
The news emerged last night that Jett Travolta, the teenage son of John Travolta and Kelly Preston, had died tragically on a family vacation, apparently from a seizure.
There has been much rumour over the years as to Jett's condition and true diagnosis. Not being a huge celebrity watcher myself, I couldn't be bothered to follow up all the Google links this morning, but Kristina Chew, (formerly of Autism Vox, one of my favourite autism blogs) has tackled the subject in her usual balanced manner here on her new blog.
Does it matter whether Jett had autism or not? Well, yes and no. I can absolutely understand a family wanting to keep their child's privacy. Yet at the same time a public acknowledgement, even if it is just to say yes, my child has the condition but we don't wish to sell the story, can help other parents.
When a child is diagnosed with any disability or serious medical condition, families can feel very isolated. Just knowing you are not alone, that even celebrities have children with similar problems, can be comforting. It can help parents get past the denial which is a normal part of coming to terms with the situation, the grieving process for the child you once expected.
Awareness raising is another factor. Again this might be through formal interviews or autobiographies, but it could equally just be by being an active role model. We all have our own levels of how much we want to disclose about our family lives. I feel comfortable in talking about son 2 on here, but as I'm sure you are aware, you read the edited version. My novel is tackling the subject in another way, by combining elements of our story together with things I have learnt from others and by adding in a huge amount of situational fiction. The emotional truth will be told, but in a different way.
I wonder how much more, if anything, the Travolta family will eventually disclose? It is, of course, absolutely their right to keep Jett's life and death private, yet at the same time they could in due course celebrate his life by sharing and helping others.
But in the meantime my sympathies are with them for their sad loss.
There has been much rumour over the years as to Jett's condition and true diagnosis. Not being a huge celebrity watcher myself, I couldn't be bothered to follow up all the Google links this morning, but Kristina Chew, (formerly of Autism Vox, one of my favourite autism blogs) has tackled the subject in her usual balanced manner here on her new blog.
Does it matter whether Jett had autism or not? Well, yes and no. I can absolutely understand a family wanting to keep their child's privacy. Yet at the same time a public acknowledgement, even if it is just to say yes, my child has the condition but we don't wish to sell the story, can help other parents.
When a child is diagnosed with any disability or serious medical condition, families can feel very isolated. Just knowing you are not alone, that even celebrities have children with similar problems, can be comforting. It can help parents get past the denial which is a normal part of coming to terms with the situation, the grieving process for the child you once expected.
Awareness raising is another factor. Again this might be through formal interviews or autobiographies, but it could equally just be by being an active role model. We all have our own levels of how much we want to disclose about our family lives. I feel comfortable in talking about son 2 on here, but as I'm sure you are aware, you read the edited version. My novel is tackling the subject in another way, by combining elements of our story together with things I have learnt from others and by adding in a huge amount of situational fiction. The emotional truth will be told, but in a different way.
I wonder how much more, if anything, the Travolta family will eventually disclose? It is, of course, absolutely their right to keep Jett's life and death private, yet at the same time they could in due course celebrate his life by sharing and helping others.
But in the meantime my sympathies are with them for their sad loss.
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