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 autism. Show all posts
Showing posts with label autism. Show all posts
Sunday, November 18, 2012
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.
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 21, 2011
Having a teenager with ASD
I was warned by friends that the teenage years with Son 2 would be hard. But he's 17 now and up until Christmas I thought we'd largely got away with. So the change from a calm boy into an often manic whirlwind, who seems to need no more than four to five hours sleep a night, has come as rather a shock.
All this comes at a time when the old support systems start to crumble. Support groups, whether online or real life local ones, tend to concentrate on families at the start of the journey and there are few parents attending who are embarking upon the challenges of decision making for their child's adulthood. Every young person presents with a unique set of circumstances, every local authority offers different services and the spending cuts add an unwelcome additional uncertainty. We should all be supporting each other, yet as parents further down the line we start to feel excluded.
Parents with younger children often seem to find hearing about the challenges of adolescence and adulthood upsetting, they don't want to look into the future. But I have a different take on this. When Son 2 was about three and very difficult, a parent introduced me to his son, who was then about 20 or 21. The young man was calm and well behaved in the presence of a stranger. Although he was largely nonverbal he was clearly bilingual, he could point out items when asked in either language and he appeared comfortable in his family home.
I couldn't imagine Son 2 ever being like that. But the father assured me that his son had been as difficult as Son 2 at the age of three. He'd gone to the same school that Son 2 now attends and his father was helping other parents to fight for a specialist education for their own children. That meeting gave me a glimmer of hope which I held on to and now, despite Son 2's current mania, I can see that he too is nearly there. I have high hopes that when the hormone rush subsides he will be like that young man.
I'm lucky that I have several friends who have adult children with moderate to severe ASD. I know who I can turn to for advice outside my previous support groups, from which I am gradually withdrawing as they seem less relevant. Everything moves on, services change, and some of the input we were lucky to receive when Son 2 was small would not be available today. I guess every new generation of parents has to fight its own battles and parents of teenagers with disabilities will continue to float away from these support groups to find advice wherever they can, unless their needs are recognised too.
All this comes at a time when the old support systems start to crumble. Support groups, whether online or real life local ones, tend to concentrate on families at the start of the journey and there are few parents attending who are embarking upon the challenges of decision making for their child's adulthood. Every young person presents with a unique set of circumstances, every local authority offers different services and the spending cuts add an unwelcome additional uncertainty. We should all be supporting each other, yet as parents further down the line we start to feel excluded.
Parents with younger children often seem to find hearing about the challenges of adolescence and adulthood upsetting, they don't want to look into the future. But I have a different take on this. When Son 2 was about three and very difficult, a parent introduced me to his son, who was then about 20 or 21. The young man was calm and well behaved in the presence of a stranger. Although he was largely nonverbal he was clearly bilingual, he could point out items when asked in either language and he appeared comfortable in his family home.
I couldn't imagine Son 2 ever being like that. But the father assured me that his son had been as difficult as Son 2 at the age of three. He'd gone to the same school that Son 2 now attends and his father was helping other parents to fight for a specialist education for their own children. That meeting gave me a glimmer of hope which I held on to and now, despite Son 2's current mania, I can see that he too is nearly there. I have high hopes that when the hormone rush subsides he will be like that young man.
I'm lucky that I have several friends who have adult children with moderate to severe ASD. I know who I can turn to for advice outside my previous support groups, from which I am gradually withdrawing as they seem less relevant. Everything moves on, services change, and some of the input we were lucky to receive when Son 2 was small would not be available today. I guess every new generation of parents has to fight its own battles and parents of teenagers with disabilities will continue to float away from these support groups to find advice wherever they can, unless their needs are recognised too.
Saturday, April 02, 2011
World Autism Awareness Day
As most of my readers know, autism is a subject close to our hearts. I've lived with autism for 17 years now and worked with autism for 10 years, as a volunteer for the National Autistic Society, helping to support other families in our area and set up local services. Over the years I've tried to raise awareness of autism by writing about some of our experiences with Son 2 here on the blog, my first novel has autism as a central theme and I've given talks to parents and professionals. Autism awareness is a powerful tool in the fight for understanding and acceptance and I've tried to make use of it. Today, World Autism Awareness Day, I'd like to direct you to two other blogs, written by friends I've made in the blogosphere. Although she doesn't blog often now, Casdok's blog Mother of Shrek is some of the most powerful writing I know on the joys and challenges of living with a young person who has severe autism. Please go back and read the archives if you are not familiar with it.
Crystal Jigsaw's blog celebrates her daughter Amy, who is living what must be an idyllic childhood for a person with autism, on a farm. The author of this blog, Kathryn Brown, has just had a novel, Discovery at Rosehill, published and for April is donating all profits on the book to the National Autistic Society in celebration of autism awareness. I've already read the lovely sample on my Kindle and am going back to download the full book. Full details of where to buy the book in print or ebook format are here.
As a family we have received tremendous benefit from the work of the National Autistic Society, as Son 2 has been educated in two of their their specialist schools since the age of four. But most families are not lucky enough to have that level of support, they are fighting for help in a world that does not yet truly understand the differences of autism or make allowances for them. Anything we can do to raise awareness, however small it might be, has to help.
Saturday, January 22, 2011
Who cares?
There is currently a big campaign being mounted about the projected future cuts to disability benefits, and rightly so. But until this week less was heard about the stealth cuts being made to other services, such as respite for the carers who save the state a fortune.
Unless you have been a carer, you will have no idea how hard it is to get respite. Not just a respite service which is suited to the child or adult cared for , but any respite at all. At the moment the only respite we receive is a fairly heavily specialist playscheme in school holidays, usually two five hour days a week if we can book a place. We are very lucky to have that.
This week there has been a bit of media interest following a plea for help on Mumsnet by a lady called Riven Vincent, who had reached the point of desperation in caring for her daughter, who has huge physical care needs due to cerebral palsy. Riven is herself disabled and as a fellow MS sufferer I know I couldn't cope in that scenario either. There are families caring for adults who are similarly struggling and it is happening all over the country. Health and social care has become budget rather than needs led.
Most of my experience of caring is for my children. I was lucky to have been given advice early on about Carer's Allowance, for which I was able to apply once son 2's severe needs had been identified about 14 years ago. This little bit of cash has been a lifeline, as due to his needs I was unable to return to anything more than a few hours part time work from home. At the moment I am not even earning from the writing work I now do after losing my job.
So yes, I get Carer's Allowance. That is £53.90 a week and is taxable if you reach the tax paying threshold. On top of that I can earn up to £100 a week (should I be able to find flexible work) but not a penny more, otherwise I lose the Carer's Allowance. To get the benefit the cared for person has to be on the middle or high rate of Disability Allowance for care (i.e. considerably disabled) and the carer has to be caring at least 35 hours a week. I did a quick tot up this morning and worked out that Son 2 needs a minimum of 80 hours a week care in term time and considerably more in school holidays. By care I mean that due to his non-existent sense of danger one of us has to be in the same room as him or within earshot and constantly checking. We live our lives in fight or flight mode and after 16 years it is taking a toll on our health. You'll notice that I haven't included night time hours in my calculation, as these vary, but again he needs supervision if awake. Whilst Hubby has always helped out with care in non-work hours, only one of can claim the benefit. If you care for more than one qualifying person, as I did for a few years, you can only claim the benefit for one of them.
We can cope with Son 2, just, but he is not as challenging as many severely autistic children. We were lucky enough to get specialist educational help early on which has helped his ability to cope a little. Hell no, we got that help because I, as his carer, fought tooth and nail for it. Carers are constantly having to fight bureacracy and advocate for the person they care for. In the next couple of years the process will start again to find adult services for him and I just don't know how I'm going to do it. Like so many carers, the constant battles have taken all the mental and physical energy from me.
Through his late son, David Cameron has personal experience of disability and being a carer. I really hoped that this might just feed through into policy, but instead the government seems intent on dismantling financial and practical support for disabled people and their carers. Please read this blog post by Catherine Hughes for lots more insight and links on disability cuts.
Life sucks.
Unless you have been a carer, you will have no idea how hard it is to get respite. Not just a respite service which is suited to the child or adult cared for , but any respite at all. At the moment the only respite we receive is a fairly heavily specialist playscheme in school holidays, usually two five hour days a week if we can book a place. We are very lucky to have that.
This week there has been a bit of media interest following a plea for help on Mumsnet by a lady called Riven Vincent, who had reached the point of desperation in caring for her daughter, who has huge physical care needs due to cerebral palsy. Riven is herself disabled and as a fellow MS sufferer I know I couldn't cope in that scenario either. There are families caring for adults who are similarly struggling and it is happening all over the country. Health and social care has become budget rather than needs led.
Most of my experience of caring is for my children. I was lucky to have been given advice early on about Carer's Allowance, for which I was able to apply once son 2's severe needs had been identified about 14 years ago. This little bit of cash has been a lifeline, as due to his needs I was unable to return to anything more than a few hours part time work from home. At the moment I am not even earning from the writing work I now do after losing my job.
So yes, I get Carer's Allowance. That is £53.90 a week and is taxable if you reach the tax paying threshold. On top of that I can earn up to £100 a week (should I be able to find flexible work) but not a penny more, otherwise I lose the Carer's Allowance. To get the benefit the cared for person has to be on the middle or high rate of Disability Allowance for care (i.e. considerably disabled) and the carer has to be caring at least 35 hours a week. I did a quick tot up this morning and worked out that Son 2 needs a minimum of 80 hours a week care in term time and considerably more in school holidays. By care I mean that due to his non-existent sense of danger one of us has to be in the same room as him or within earshot and constantly checking. We live our lives in fight or flight mode and after 16 years it is taking a toll on our health. You'll notice that I haven't included night time hours in my calculation, as these vary, but again he needs supervision if awake. Whilst Hubby has always helped out with care in non-work hours, only one of can claim the benefit. If you care for more than one qualifying person, as I did for a few years, you can only claim the benefit for one of them.
We can cope with Son 2, just, but he is not as challenging as many severely autistic children. We were lucky enough to get specialist educational help early on which has helped his ability to cope a little. Hell no, we got that help because I, as his carer, fought tooth and nail for it. Carers are constantly having to fight bureacracy and advocate for the person they care for. In the next couple of years the process will start again to find adult services for him and I just don't know how I'm going to do it. Like so many carers, the constant battles have taken all the mental and physical energy from me.
Through his late son, David Cameron has personal experience of disability and being a carer. I really hoped that this might just feed through into policy, but instead the government seems intent on dismantling financial and practical support for disabled people and their carers. Please read this blog post by Catherine Hughes for lots more insight and links on disability cuts.
Life sucks.
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.
Thursday, October 28, 2010
Back to the day job
The last two weeks have been half term, so my waking hours have been consumed by being Son 2's carer. It is something of a mental leap from being merely a parent to a carer but Son 2 is now 16, he should be trying to sneak out to the pub rather than watching CBeebies all day and when I look at the independence of his brother, I can make that transition. I can accept that it is a day job, if a very poorly paid one.
This holiday has been about broadening Son 2's musical tastes. He loves music, he actually spends all day plugged into an mp3 player in a most age appropriate manner, although for a long time his musical choices were not so age appropriate. Then a few months ago he stole an mp3 player from me. Yes, it's a pink mp3 player. Get over it. On it were some of my favourite tracks of all time, the soundtrack to my life. Son 2 loves it. But again, the music is not exactly what your typical 16 year old listens to. I'm out of date, I don't know what to offer him.
So this, dear readers, is where you come in.
Son 2 likes ballads and more up tempo tracks with a definite tune and perhaps a little bit of drama. As he is nonverbal the music is more important than the lyrics and he likes classical music and chillout tracks. I have found him listening recently to Amy Winehouse, Duffy and Adele but he also really likes Take That (Patience), Coldplay (Viva la Vida) and the Motown and soul of the Sixties and Seventies, while yesterday he was listening to Lady GaGa's Bad Romance over again on YouTube. I realise that his musical tastes are currently somewhat limited by our own and I want to download more contemporary tracks for him.
Any good suggestions?
This holiday has been about broadening Son 2's musical tastes. He loves music, he actually spends all day plugged into an mp3 player in a most age appropriate manner, although for a long time his musical choices were not so age appropriate. Then a few months ago he stole an mp3 player from me. Yes, it's a pink mp3 player. Get over it. On it were some of my favourite tracks of all time, the soundtrack to my life. Son 2 loves it. But again, the music is not exactly what your typical 16 year old listens to. I'm out of date, I don't know what to offer him.
So this, dear readers, is where you come in.
Son 2 likes ballads and more up tempo tracks with a definite tune and perhaps a little bit of drama. As he is nonverbal the music is more important than the lyrics and he likes classical music and chillout tracks. I have found him listening recently to Amy Winehouse, Duffy and Adele but he also really likes Take That (Patience), Coldplay (Viva la Vida) and the Motown and soul of the Sixties and Seventies, while yesterday he was listening to Lady GaGa's Bad Romance over again on YouTube. I realise that his musical tastes are currently somewhat limited by our own and I want to download more contemporary tracks for him.
Any good suggestions?
Monday, October 11, 2010
Hmm, I wonder...
I often wonder why son 2 has autism. There is no obvious genetic link as nobody else has the diagnosis on either side of the family, even though one or two family members might be considered to have some quirks. But don't we all?
I've got past the guilt of wondering if it was something that happened during pregnancy. I do believe that son 2 showed some signs of autism right from the earliest days, but it was a planned pregnancy, I was ultra-cautious and I wasn't even working at the time, so was as stress-free as one can be whilst looking after a toddler.
But I went into early labour with both my boys, so I was interested to read the new research on a possible link between neo-natal jaundice and autism. To summarize: a full-term baby born between October and March, who has suffered neo-natal jaundice and is not the mother's first child, is 67% more likely to develop autism.
Now let's look at my evidence. Son 2, born in March, was not full-term, but at just over 36 weeks he was only a few days short of being considered so. The only issues he had were jaundice and minor feeding problems. Unlike Son 1, born in October, who was a 34 week baby and spent 6 weeks in the neonatal unit where the jaundice was the least of his problems.
So, both boys fall into the risk category for month of birth and having suffered jaundice, but Son 1 was born earlier, was more sick and was my first pregnancy. You'd perhaps expect him to be more vulnerable but the antibodies would not have built up and according to the research that would have protected him.
Son 1 has, of course, had his own issues, some of which may have a root cause in his prematurity (there is research to support this too). But he does not have autism, in fact he is a very sociable young man now. Son 2, however, had all the risk factors and is severely autistic.
Perhaps there is something in all this research...
I've got past the guilt of wondering if it was something that happened during pregnancy. I do believe that son 2 showed some signs of autism right from the earliest days, but it was a planned pregnancy, I was ultra-cautious and I wasn't even working at the time, so was as stress-free as one can be whilst looking after a toddler.
But I went into early labour with both my boys, so I was interested to read the new research on a possible link between neo-natal jaundice and autism. To summarize: a full-term baby born between October and March, who has suffered neo-natal jaundice and is not the mother's first child, is 67% more likely to develop autism.
Now let's look at my evidence. Son 2, born in March, was not full-term, but at just over 36 weeks he was only a few days short of being considered so. The only issues he had were jaundice and minor feeding problems. Unlike Son 1, born in October, who was a 34 week baby and spent 6 weeks in the neonatal unit where the jaundice was the least of his problems.
So, both boys fall into the risk category for month of birth and having suffered jaundice, but Son 1 was born earlier, was more sick and was my first pregnancy. You'd perhaps expect him to be more vulnerable but the antibodies would not have built up and according to the research that would have protected him.
Son 1 has, of course, had his own issues, some of which may have a root cause in his prematurity (there is research to support this too). But he does not have autism, in fact he is a very sociable young man now. Son 2, however, had all the risk factors and is severely autistic.
Perhaps there is something in all this research...
Friday, October 01, 2010
Interview with DJ Kirkby
I'm delighted that DJ Kirkby has agreed to be interviewed here to celebrate the official launch of her debut novel, Without Alice which I found to be a compelling read, written by a true storyteller. The interview is long, but please bear with us, as it covers subjects close to both our hearts.
You make no secret of the fact that you were diagnosed with Asperger’s Syndrome, dyspraxia and dyslexia as an adult. Asperger’s Syndrome is a disorder on the autistic spectrum and people with autism generally have the ‘triad of impairments’ which means that they have difficulty with ‘social communication, social interaction and social imagination’ (National Autistic Society). Do you think that the self-understanding which must have followed the diagnosis has impacted on your writing in any way and do you find writing therapeutic?
I think that my diagnosis was one of the most life enhancing things to have happened to me, and yes it did have a huge impact on my writing. Once I realised just how well I had been coping for my whole life I realised that I could go on to write that novel I had been dreaming of. If I could function in a predominantly neurotypical world so well (as opposed to so badly as I’d thought for many years) then there was no reason why I couldn't write a novel and do a good job of that too. Writing has always helped me make sense of the chaos I see the neurotypical world. Maintaining a neurotypical facade for the entire workday is like performing a play in a language that I have a working knowledge of, but one which is not my first language. So whilst I might come across as outwardly believable, inside I am double guessing myself, questioning my every move and having to interpret the response I get into my ‘language’ to try and establish what, exactly, the person I am interacting with actually meant.
As the parent of a severely autistic young person I've read a number of books written by people with autism, but they were all non-fiction or memoirs (including your own amazing From Zaftig to Aspie). Do you think you are unique in being a person with Asperger’s Syndrome who has had a novel published?
I think every human is unique but as far as I know I am the only openly autistic person who has had a novel published, although there are many talented published autistic authors such as Temple Grandin, John Elder Robison, Claire Sainsbury and Wendy Lawson to name just a few.
Many people with Asperger’s Syndrome suffer from severe anxiety, but I'm always impressed by your energy, enthusiasm and promotional ability. You don’t appear to suffer from the self-doubt which troubles so many new writers. You had setbacks on the road to getting Without Alice published, but do you feel that it was your confidence which got the result in the end?
I am not obviously self doubtful ( it is very easy to hide emotions on the internet) because I have been told by a few successful authors whom I trust that if a writer wishes their work to be taken seriously, then they first, must appear as if they believe it worthy of that. I think the fact that I have always behaved professionally while on the internet has helped me overcome the setbacks I endured with getting my novel published. The writing/ publishing world is very small and most of us have heard of one another to some degree. What my readers don’t see and perhaps do need to know, is that I am as fretful and anxious as the ‘average’ autistic person, and not a day goes by where I don’t suffer sensory overload and question whether I have what it takes to carry on promoting myself as an author. To carry on means that I have to keep putting myself in the spot light, and under scrutiny. Fairly easy to do on the internet where I can take my time and write out my responses – run them past my husband for a social acceptableness check - much more difficult to do in real time during non internet public appearances. For particularly challenging ones such as book launch parties where sensory overload is guaranteed I have my husband or another carer with me and make sure I’ve booked the following day off work but for things like book signings I have to go to them alone and just ensure that I identify a quiet room where I can spend time when it becomes necessary. Usually it is the staff toilet!
I find that people with autism either follow rules to the letter or tend to disregard them totally. Do you follow the so-called ‘rules’ ( e.g. ‘show not tell’) when you are writing and editing, or do you prefer to write more freely?
I think that I am good at showing the reader the scenes simply because I am an outsider in the world about which I write. My characters are neurotypical non autistic people so when I write from my perspective I am showing my readers what I see as an autistic person which works wonderfully in terms of getting a novel written the right way. The areas I struggle with are portraying communication believably, and I tend to use less dialogue than other novelists. If the lack of dialogue is significant from a neurotypical aspect then this is picked up in editing (I paid to have Without Alice professionally edited before submitting it to my publisher), and I then expand the dialogue in the identified areas.
I've tried to plan my own fledgling writing career, starting with courses to learn the craft of writing followed by targeted submissions. I know many people with autism like their life to be highly structured, so have you taken a similar approach or have you just taken advantage of opportunities as they have arisen?
I have written for so long that it is part of the structure of my daily life. I feel highly anxious if I don’t get time to write. I use it as a method of stress relief and a way of sorting through the events of the day, a way to learn from my mistakes. However, I have never taken a writing course as that would mean even less downtime than I have now. I work full time and having to take an evening (or weekend) course whether in a class or via distance learning would still mean that I have to do more intensive work after a hectic and stressful work day. All I want to do is spend more time with my family, not less and I know that I couldn’t cope with the extra work involved in taking a writing course. I do read a lot of writing books and blogs and learn a lot of what (and what not) to do in relation to writing as a result. This method seems to have worked for me and Without Alice is a novel that I am proud of.
You have launch parties planned for Without Alice. Do you find the face to face promotional aspects of being a writer particularly daunting?
As I mentioned earlier, I am very anxious about the promotional work for Without Alice. I also know that it is as much a part of being an author as actually writing the novel. If I don’t get myself out there and meet my readers, then how do I engage with them and get to know what they want from me as an author? Additionally, because I am published by an independent (small) publisher, if I don’t do public appearances then word of mouth about me as an author wont happen and I need it to for my book sales to happen. I know that even authors who are published by big publishers (with big marketing budgets) have to get out and promote themselves which means that this has to be done even more intensively for an author published by a small publisher. Writing a good novel is only the first part of the job.I consider myself very lucky to have found a publisher who was willing to read a submission from an openly autistic author in the first place and then for him to believe in my writing enough to take a risk in publishing me. After all, all the work and money involved in making my novel actually physically available for readers to buy has come from my publisher. I feel I owe it to both of us to make sure that I do everything I can to engage with readers and hopefully have them like me enough as an author to tell their friends about me and my novel (s). Having said all that, self promotion is one of the hardest things I have ever had to do.
First I have to get readers interested enough to come in and see me, then I have to get book shops to agree to let me come in for a signing and once there I also need to approach random people who come into the shop. Once I have done so I then need to engage with them in such a manner that they are willing to buy a copy or two of my novel! I do spend time in my bolt hole freaking out until I calm down enough to get back on the shop floor and carry on.
At the book launch parties I will drink wine and wear ear plugs as both help to smooth out the sensory overload long enough to get me through the event. Having said that, I often appear distracted and sometimes talk nonsense. This is because I am paying attention to the sensory overload instead of the person talking to me. I apologise in advance to anyone that I may do this to. I struggle to hear things sometimes because all I can hear is everything around me due to the fact that my brain doesn’t do a good job of tuning out unnecessary noises, so I can hear all the conversations at once, the phone ringing, the door opening, the cash register working the air conditioning or heating, traffic noise, smell people’s perfumes, colognes, bad breath, hair products, hear their clothes rustle, drinks being poured, scents from the street outside and so on. So if it seems like I am not fully focussed on what you’re saying, it’s not that you’re uninteresting, it’s just me being me.
You not only write prolifically, but hold down a high-powered day job and care for your family. What life advice would you give to a young person with Asperger’s Syndrome?
Don’t be afraid of failure. Think of it as an excuse to go back the way you came until you find a more successful way around the obstacle. Don’t be ashamed to ask for help but never use autism as an excuse. You know it isn’t an excuse, it’s our way of being and that means we have to go about things differently to be able to function in society. We know ourselves best and so it’s up to us to find our own way of coping with functioning in a socially acceptable manner. We are all individuals with unique desires and dreams and with the right support, you can do anything you wish to do. Once you get there you may realise that it isn’t actually what you did want and that’s ok too because you can start over and go get something different. Everything will probably seem like very hard work but that is what life is all about and you’ll find coping strategies along the way if you’re willing to try things out until you find the ones that work best for you. Make sure that you have some things that are easy and make you happy, and treat yourself to these things when you need a break but don’t let yourself obsess on them or you won’t get anything else done.
DJ Kirkby has dedicated Facebook pages for her books Without Alice and From Zaftig to Aspie.
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...
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.
Monday, June 14, 2010
Peace at last?
Son 2's half term was only two weeks (yes, I know, he gets just four weeks holiday in the summer) but it seemed endless.
It wasn't that he was particularly difficult, in fact he amused himself very well. But he was LOUD. At almost any time of day he would have the television on at one end of the room and his computer playing video clips, noisily and repetitively, at the other end. He wouldn't let us turn either off, he is indeed Mr Control Freak, and he would also 'shout' loudly and nonverbally over the top, especially if anyone was trying to talk.
I used to be able to switch off from all his noise and let it wash over me, but recently I seem to have lost that ability. Even though my desk is upstairs, the sounds are very disturbing if I leave Hubby in charge and try to work. I did escape to the library one day last week but it was full of toddlers and students on exam leave. So in the end I had to accept that the story I am writing was not going to get done during half term and I just got down to some novel research instead.
The difference today is amazing and although I normally take Son 2's first day back at school off to recover, my concentration is rapidly starting to return. Until, that is, the football is switched on and I have to suffer the drone of the vuvuzelas...
It wasn't that he was particularly difficult, in fact he amused himself very well. But he was LOUD. At almost any time of day he would have the television on at one end of the room and his computer playing video clips, noisily and repetitively, at the other end. He wouldn't let us turn either off, he is indeed Mr Control Freak, and he would also 'shout' loudly and nonverbally over the top, especially if anyone was trying to talk.
I used to be able to switch off from all his noise and let it wash over me, but recently I seem to have lost that ability. Even though my desk is upstairs, the sounds are very disturbing if I leave Hubby in charge and try to work. I did escape to the library one day last week but it was full of toddlers and students on exam leave. So in the end I had to accept that the story I am writing was not going to get done during half term and I just got down to some novel research instead.
The difference today is amazing and although I normally take Son 2's first day back at school off to recover, my concentration is rapidly starting to return. Until, that is, the football is switched on and I have to suffer the drone of the vuvuzelas...
Thursday, June 10, 2010
Teaching
Yesterday I spent most of the day teaching at City University in London. Perhaps teaching is really too strong a word, as I'm not professionally qualified in any way to teach. But I, along with two others, spent time talking to a whole year group of student speech and language therapists about our experiences of parenting children with language and communication difficulties and helping them understand how to communicate with parent carers in their professional lives.
I've been doing these occasional sessions for about five years now and find them very enjoyable. Yesterday, as I was recounting some of our experiences to the room, it struck me how much easier it had become. Not just to speak out to so many people, but to discuss the past without getting upset. That, I think, is a measure of how far son 2 has come and perhaps also of my ability to deal with his autism.
The first year students always seem to appreciate our input. We guest speakers arrive after they've already had a short academic session and we then take turns to tell a little of our histories. After lunch the students undertake a fun written exercise in smaller groups and we circulate the room, helping them and enabling them to ask lots more questions if they wish. It works well and the students all seem to enjoy it.
As always, I was impressed by how well the students had taken in the themes under discussion and the intelligence of their questions. There is no doubt that they are all entering their chosen profession with genuine motivation. But there were also fears being expressed privately about the uncertain future of the NHS. There is already a shortage of speech and language therapists in frontline services and the future does not look bright for either therapists or service users.
Although I never had any desire to be a teacher like my father, I really do enjoy my brief forays into higher education teaching. It's fun. Maybe I actually missed my vocation somewhere!
I've been doing these occasional sessions for about five years now and find them very enjoyable. Yesterday, as I was recounting some of our experiences to the room, it struck me how much easier it had become. Not just to speak out to so many people, but to discuss the past without getting upset. That, I think, is a measure of how far son 2 has come and perhaps also of my ability to deal with his autism.
The first year students always seem to appreciate our input. We guest speakers arrive after they've already had a short academic session and we then take turns to tell a little of our histories. After lunch the students undertake a fun written exercise in smaller groups and we circulate the room, helping them and enabling them to ask lots more questions if they wish. It works well and the students all seem to enjoy it.
As always, I was impressed by how well the students had taken in the themes under discussion and the intelligence of their questions. There is no doubt that they are all entering their chosen profession with genuine motivation. But there were also fears being expressed privately about the uncertain future of the NHS. There is already a shortage of speech and language therapists in frontline services and the future does not look bright for either therapists or service users.
Although I never had any desire to be a teacher like my father, I really do enjoy my brief forays into higher education teaching. It's fun. Maybe I actually missed my vocation somewhere!
Monday, April 19, 2010
Ashes to ashes
Watching and reading reports about the travel chaos caused by the cloud of volcanic ash from Iceland, I have been forcibly reminded why we just don't travel with Son 2 nowadays.
I used to love to travel. I've even lived abroad for a while. But anyone who travels regularly will know that from time to time difficulties will be encountered in the form of delays, breakdowns, missed connections or even, as in this case, a totally unpredictable 'act of God'.
Over the years I've had my own share of travel difficulties. A missed connection in Germany while travelling alone at the age of 17 necessitated spending hours on Cologne station in the dead of night. A broken-down plane enforced an extra 24 hours in Hong Kong when all hotels were fully booked and the airline tried to book us into a brothel. A delayed ferry meant ultimately spending an uncomfortable night on Victoria Coach Station. And of course there have been many more frustrations in the form of traffic jams and vehicle breakdowns.
But Son 2 couldn't cope with any of that. Like many people with autism he needs life to be totally predictable, because he has a constant high level of anxiety. There is nothing he loves better than the security of home and he just doesn't 'do' holidays. If he is stressed and unhappy, we are stressed.
For years we did go on holiday, because we are lucky enough to have family living by the sea in a beautiful part of the country. But for the last few years staying in that sort of 'home from home' has not been possible, so we have stayed here.
Of course, not all people with autism are like Son 2 and I have friends who do travel successfully with their autistic offspring. But trips have to be planned like a military operation and recent events have left me wondering how they would cope if stranded abroad by a flight ban, or cooped up in a stalled Eurostar train for hours on end.
Perhaps I am being overly negative in worrying about such things. But I used to return from even our straightforward trips with Son 2 feeling mentally and physically ill from the stress of trying to prevent him doing damage or escaping the building. It was never, ever a holiday for me.
I used to love to travel. I've even lived abroad for a while. But anyone who travels regularly will know that from time to time difficulties will be encountered in the form of delays, breakdowns, missed connections or even, as in this case, a totally unpredictable 'act of God'.
Over the years I've had my own share of travel difficulties. A missed connection in Germany while travelling alone at the age of 17 necessitated spending hours on Cologne station in the dead of night. A broken-down plane enforced an extra 24 hours in Hong Kong when all hotels were fully booked and the airline tried to book us into a brothel. A delayed ferry meant ultimately spending an uncomfortable night on Victoria Coach Station. And of course there have been many more frustrations in the form of traffic jams and vehicle breakdowns.
But Son 2 couldn't cope with any of that. Like many people with autism he needs life to be totally predictable, because he has a constant high level of anxiety. There is nothing he loves better than the security of home and he just doesn't 'do' holidays. If he is stressed and unhappy, we are stressed.
For years we did go on holiday, because we are lucky enough to have family living by the sea in a beautiful part of the country. But for the last few years staying in that sort of 'home from home' has not been possible, so we have stayed here.
Of course, not all people with autism are like Son 2 and I have friends who do travel successfully with their autistic offspring. But trips have to be planned like a military operation and recent events have left me wondering how they would cope if stranded abroad by a flight ban, or cooped up in a stalled Eurostar train for hours on end.
Perhaps I am being overly negative in worrying about such things. But I used to return from even our straightforward trips with Son 2 feeling mentally and physically ill from the stress of trying to prevent him doing damage or escaping the building. It was never, ever a holiday for me.
Friday, April 09, 2010
Randomness
A mish-mash of news and random things today.
Firstly and most importantly, I completely forgot to blog about World Autism Awareness Day, which was a whole week ago. If you are interested in finding out more, the UK website is here.
We're all currently a bit under the weather with cough and cold viruses. However, a nice man has removed the virus from Hubby's laptop for a very reasonable fee.
Tesco decided that macaroni cheese was a good substitute for Chinese crispy fried duck in our order today. Why? The macaroni cheese was sent straight back. To be fair, we usually do get fairly sensible substitutions, this was just one of the most random ones we've ever received. But home delivery is such a blessing during school holidays when it is almost impossible to get to a store.
Finally, I now appear to have been married for 22 years. How on earth can that be?
Firstly and most importantly, I completely forgot to blog about World Autism Awareness Day, which was a whole week ago. If you are interested in finding out more, the UK website is here.
We're all currently a bit under the weather with cough and cold viruses. However, a nice man has removed the virus from Hubby's laptop for a very reasonable fee.
Tesco decided that macaroni cheese was a good substitute for Chinese crispy fried duck in our order today. Why? The macaroni cheese was sent straight back. To be fair, we usually do get fairly sensible substitutions, this was just one of the most random ones we've ever received. But home delivery is such a blessing during school holidays when it is almost impossible to get to a store.
Finally, I now appear to have been married for 22 years. How on earth can that be?
Wednesday, March 17, 2010
Sleep deprivation
I'm feeling exhausted. Son 2 has decided that it is cool to get up between 5 and 5.30am, almost every day. A recent lie in to 6.30 was a luxury.
We don't know what wakes him. A neighbour does drive off in a van at a ridiculously early hour, but that is around 4am. I sometimes stir and hear the vehicle but go straight back to sleep. Does that disturb Son 2 as well?
Because he can't be left unattended I have to get up too. Now strangely at Christmas, when he was sleeping better, I went through a phase of waking at 5am myself. I had a huge burst of creative energy and wrote a significant chunk of my novel on those mornings, before anyone else rose for the day.
But now I'm too tired to contemplate early morning writing. I just crave a shot of caffeine, not least to damp down the muscle spasm I usually have on waking. And I need to find something even more effective to cover my dark shadows.
We don't know what wakes him. A neighbour does drive off in a van at a ridiculously early hour, but that is around 4am. I sometimes stir and hear the vehicle but go straight back to sleep. Does that disturb Son 2 as well?
Because he can't be left unattended I have to get up too. Now strangely at Christmas, when he was sleeping better, I went through a phase of waking at 5am myself. I had a huge burst of creative energy and wrote a significant chunk of my novel on those mornings, before anyone else rose for the day.
But now I'm too tired to contemplate early morning writing. I just crave a shot of caffeine, not least to damp down the muscle spasm I usually have on waking. And I need to find something even more effective to cover my dark shadows.
Friday, March 05, 2010
Adult Autism Strategy
Following on from the passing of the Autism Act in 2009 the Government has now published its Adult Autism Strategy for England. I haven't yet read it, but this is the take of the National Autistic Society.
One of things that amazes me is that over the years no one has kept accurate records of how many adults have autism. This has obviously been affected by the fact that diagnostic procedures have improved and many people are diagnosed in adult life. But given that the diagnosis rate in children is 1 in 100, according to the National Autistic Society, there must be a lot of adults with autism out there, most of whom are not getting appropriate services. Anything which recognises this and makes progress towards increasing support has to be welcomed. But nothing is going to happen quickly, and current budget restraints will no doubt slow the processes up even further.
One of the biggest difficulties is there can be no 'one size fits all' solution. People on the autistic spectrum can range from profoundly disabled to university professors, with most slotting in somewhere inbetween. Have a look at Temple Grandin's TED talk on autism for a wonderful view of autism from a high functioning autistic adult. But remember that for every Temple Grandin there is also an adult who can't communicate and needs 24 hour support.
One of things that amazes me is that over the years no one has kept accurate records of how many adults have autism. This has obviously been affected by the fact that diagnostic procedures have improved and many people are diagnosed in adult life. But given that the diagnosis rate in children is 1 in 100, according to the National Autistic Society, there must be a lot of adults with autism out there, most of whom are not getting appropriate services. Anything which recognises this and makes progress towards increasing support has to be welcomed. But nothing is going to happen quickly, and current budget restraints will no doubt slow the processes up even further.
One of the biggest difficulties is there can be no 'one size fits all' solution. People on the autistic spectrum can range from profoundly disabled to university professors, with most slotting in somewhere inbetween. Have a look at Temple Grandin's TED talk on autism for a wonderful view of autism from a high functioning autistic adult. But remember that for every Temple Grandin there is also an adult who can't communicate and needs 24 hour support.
Saturday, February 27, 2010
Taking pleasure in small things
This week my lovely mentor Caroline blogged about why she gets so excited about 'little' things. I'm not going to paraphrase her moving words, if you haven't read the post and the lovely comments that followed then please do.
And it got me thinking. As parents of children with special needs, we too have to learn to celebrate the smallest of things. Son 2 should now be approaching his GCSE exams, yet as we sat in a meeting at his school yesterday, we were asked to celebrate the fact that, just occasionally, the teacher can get him to focus on a task for up to 30 minutes. He should be planning for sixth form and university, instead it was hinted that due to his lack of engagement he may not qualify for short term funding at a residential college when he leaves school, something on which I had been planning.
But hey, you know it's fine. Because ever since he was one we have had to adjust our expectations. We have learnt to take pleasure in his small successes. Every year he does make progress, even if it is entirely on his own terms. Before the meeting he had filled in a sheet, by selecting and sticking symbols, to tell us all what he likes at school and wants to do next year. He enjoys ICT and Food Technology. He wants to do yoga. All of this made perfect sense to us, they were clearly his own choices.
So at the end of the meeting we came out celebrating the fact that in his almost five years at that school he has made lots of progress. He might not, through his own choice, shine at English and Maths, but he is learning life skills which for him are far more important. As the formal part of his education draws to a close the school will be focusing more on getting him doing fun things in the community, something which he often finds rather scary.
We will all, school staff and family, continue to celebrate his every small achievement. It's something that perhaps only those parents who have been there can truly understand.
And it got me thinking. As parents of children with special needs, we too have to learn to celebrate the smallest of things. Son 2 should now be approaching his GCSE exams, yet as we sat in a meeting at his school yesterday, we were asked to celebrate the fact that, just occasionally, the teacher can get him to focus on a task for up to 30 minutes. He should be planning for sixth form and university, instead it was hinted that due to his lack of engagement he may not qualify for short term funding at a residential college when he leaves school, something on which I had been planning.
But hey, you know it's fine. Because ever since he was one we have had to adjust our expectations. We have learnt to take pleasure in his small successes. Every year he does make progress, even if it is entirely on his own terms. Before the meeting he had filled in a sheet, by selecting and sticking symbols, to tell us all what he likes at school and wants to do next year. He enjoys ICT and Food Technology. He wants to do yoga. All of this made perfect sense to us, they were clearly his own choices.
So at the end of the meeting we came out celebrating the fact that in his almost five years at that school he has made lots of progress. He might not, through his own choice, shine at English and Maths, but he is learning life skills which for him are far more important. As the formal part of his education draws to a close the school will be focusing more on getting him doing fun things in the community, something which he often finds rather scary.
We will all, school staff and family, continue to celebrate his every small achievement. It's something that perhaps only those parents who have been there can truly understand.
Friday, February 19, 2010
Sixteen
In the midst of all my editing and lots of other things going on, it almost escaped me that Son 2's birthday was rapidly approaching. In a couple of weeks he will be 16.
That will bring all kinds of changes. For a start the Department of Work and Pensions wants to know whether he can in future manage his own disability benefits. Well doh. He doesn't speak, read or write his own name. The answer is no. So next week they want to visit to check this out for themselves ( because obviously we are not to be trusted to act in his interests) and he has to be here. On what should have been his first day back at school.
This seems like last minute stuff, but to be fair to the DWP a meeting was originally arranged before Christmas but I had to cancel, as it turned out to be on the same day I needed to be at the hospital to find out if I had breast cancer (for new readers, I don't).
Later next week we have the annual review meeting at Son 2's school where no doubt his future will also be discussed. In September he will move up to the post-16 unit on a different site where he can stay until he is 19. With all the economic and political uncertainty in this country, it currently seems impossible to think much beyond that, but we will have to start.
Then yesterday I realised that he will most probably lose his regular holiday respite at a special needs playscheme, as he will be too old. That will be a huge gap to fill and I'm not at all sure there is anything suitable to replace it. We currently don't have a social worker but I think we might just need one now, though how much use one would be is debatable.
There are probably going to be a lot of changes for Son 2 this year and I just don't know how he will cope. Like many people with autism, he just doesn't do change. We may be in for a rocky ride.
That will bring all kinds of changes. For a start the Department of Work and Pensions wants to know whether he can in future manage his own disability benefits. Well doh. He doesn't speak, read or write his own name. The answer is no. So next week they want to visit to check this out for themselves ( because obviously we are not to be trusted to act in his interests) and he has to be here. On what should have been his first day back at school.
This seems like last minute stuff, but to be fair to the DWP a meeting was originally arranged before Christmas but I had to cancel, as it turned out to be on the same day I needed to be at the hospital to find out if I had breast cancer (for new readers, I don't).
Later next week we have the annual review meeting at Son 2's school where no doubt his future will also be discussed. In September he will move up to the post-16 unit on a different site where he can stay until he is 19. With all the economic and political uncertainty in this country, it currently seems impossible to think much beyond that, but we will have to start.
Then yesterday I realised that he will most probably lose his regular holiday respite at a special needs playscheme, as he will be too old. That will be a huge gap to fill and I'm not at all sure there is anything suitable to replace it. We currently don't have a social worker but I think we might just need one now, though how much use one would be is debatable.
There are probably going to be a lot of changes for Son 2 this year and I just don't know how he will cope. Like many people with autism, he just doesn't do change. We may be in for a rocky ride.
Subscribe to:
Posts (Atom)