So you fancy a fried egg, and your mum isn't sorting you out fast enough so you do it yourself.
First you get the frying pan and pour in a bit of olive oil.
Then you get the carton of eggs, and a small plastic container. You don't like egg yolk, so Mummy always separates the eggs and saves the yolks for use in a pancake or something else later. You've watched this loads of times and know just what to do. You crack the egg, use the shell to separate the yolk and pour the white in the frying pan onto the oil, and drop the yolk into the plastic container. Then you go get Mummy, because even the self reliant 7 year old knows not to turn the hob on.
Mummy is rather surprised to see what I've done so far, but at last, she performs the last step and I get my fried egg white, coated (obviously) in ketchup. Yummy!
12 Sept 2007
6 Sept 2007
Monster Autism in the Daily Mail; Update
I really should know better than to take an article in the Daily Mail newspaper at face value. When I wrote about a recent diatribe on life with an autistic child, I took it to be the words of the mother whose name was under the headline. It was not. It was a selective adaptation from her book. The author of the book, Jan Greenman, commented on my post. She was polite and was keen to set the record straight about her son. I apologised to her for the absolutely unnecessary personal insult I levelled at her in my original post, when I thought she was the author of the actual newspaper article.
Jan wrote in my comments section about the paper's decision to feature her book;
She also wrote;
Isn't it a pity that these words weren't published in the paper. I had written, 'I have judged her by her words. I know this is a newspaper article and journalists can twist the story to fit the template that sells more, but she has written a book, and I can't see a single positive word from her in the whole article.' I was right about the journalist but wrong about Jan Greenman.
Jan wrote in my comments section about the paper's decision to feature her book;
I was so excited, assuming that it would be in the form of a book review and give people, as my book does, the truth about Luke's life with labels. I have written a book about all the aspects of Luke's life and the book is NOT about me, although the Mail have written it from that perspective, picking out probably all the references to me in the whole book!
She also wrote;
Luke is so brilliant at talking for himself and explaining how it feels to be him. He has written tips at the end of each chapter for parents to try and understand what was going through his head when he behaved in a certain way and everyone who has read the book says that they laughed, they cried, they couldn't put it down but they understood so much more at the end of it and had so much respect for Luke. He has had the toughest time at school and I have fought tooth and nail to get him any kind of help and recognition of his differences and how they affect him. He has many sensory sensitivities and he is acutely aware of who likes him and who doesn't and acts accordingly. He wasn't diagnosed with Aspergers Syndrome until he was 10yrs old, which is why I didn't understand him properly and he didn't cuddle me until he was 11. Because he was my first child, I just didn't know what had hit me and yet I loved him utterly.
Isn't it a pity that these words weren't published in the paper. I had written, 'I have judged her by her words. I know this is a newspaper article and journalists can twist the story to fit the template that sells more, but she has written a book, and I can't see a single positive word from her in the whole article.' I was right about the journalist but wrong about Jan Greenman.
5 Sept 2007
Goodbye Granny
My granny died on Saturday morning. She was 95 and had been getting increasingly ill over the past few weeks.
She was a marvellous woman; loving, kind, exceedingly generous, full of joy and smart as a whip up to the end. My dad was one of her 8 children, I am one of her 35 grandchildren and my children are among her 32 great-grandchildren. (I think those numbers are right; perhaps I should add error margins!)
We used to all gather at her house every Sunday afternoon when I was a child. We'd run around the field behind the house, and eat beef sandwiches and shop-bought cakes; which was a treat for me since we only ever got home-made at home. Granny lived in the same house all her life. My Granda, her husband, died 4 years ago. They had been married for 64 years. Two of her brothers never married and lived their whole lives in the house with her, Granda and their family.
Over the past few years Granny become more frail and my aunt, who continued to live at home when she married and had children, has taken such good care of her. Their house had an open door policy and people were regularly calling in and were always made welcome. Granny loved visitors; knowing what you were up to and where you were going. She enjoyed seeing us dressed up, always saying 'health to enjoy' when we showed off a new outfit. Most of all, she loved to see all the children who came to visit, or my aunt's own grandchildren whom she also cared for. Granny somehow managed to remember all of us and know where we were living and what we were doing with our lives.
Gordon wasn't around. He's on a conference in Korea. But my sister flew in from London, and went with me and the children, back to Granny's house for the wake. Lady had been to my other Granda's wake so knew what to expect, but I explained to Thomas that my Granny's body would be in an open coffin in her bedroom and we could go in to see her. This we all did, and they were not in the least bit fazed. I was upset to see her, especially when I went into the living room and saw the empty space where her chair always sat beside the range cooker.
Duncan didn't like the house full of people, which is only to be expected, so he spent most of the time outdoors. Thankfully, the weather was great. Lady and Thomas also ran around in the garden (which used to be the field I played in) with the other children who were there. I had lots of help looking after Duncan, especially from my Dad (as always) and my brother's girlfriend, who took all my children to her house for a few hours leaving me peace to talk to the relatives, friends and neighbours who were gathered or just paying a short visit. My sister was among those on tea duty. Endless trays of sandwiches and buns were dispensed along with a never ending supply of tea. It used to be worse; I can remember wakes I was at as a child, where there'd be dishes stacked with cigarettes for the visitors!
The funeral was held the next day. The church was packed. A cousin from my mum's side of the family was kind enough to stay in my car with Duncan while he watched a DVD. He'd been crying 'no go into church' when we arrived and there was no way I was going to force him into that big, scary building. Thomas made me laugh during the ceremony; the priest said the line 'where we live forever...' and Thomas said incredulously, 'We live forever?!' Anyway, for a boy not used to church, he behaved wonderfully. In fact all 3 children were marvellous the whole 2 days, and I told them when we were driving home how proud I was of them. I had so many people comment on what lovely children they are. Many of my relatives delighted in Duncan too and commented on how well he's doing. I was a bit concerned by his shouting, especially when he shouted a rude phrase in his discomfort or frustration. Mostly he was very happy, if extremely mobile, and I (and my helpers) did a fair bit of running after him to be sure he stayed away from the open path to the road.
It was sad saying goodbye to Granny. She was a big part of our lives for lots of us. She was always there. But I take comfort in remembering her, and knowing she was happy, in spite of the hard times, hard work and bereavements she lived through. She loved her family, loved a celebration, and will be remembered for a long time to come by great many people.
She was a marvellous woman; loving, kind, exceedingly generous, full of joy and smart as a whip up to the end. My dad was one of her 8 children, I am one of her 35 grandchildren and my children are among her 32 great-grandchildren. (I think those numbers are right; perhaps I should add error margins!)
We used to all gather at her house every Sunday afternoon when I was a child. We'd run around the field behind the house, and eat beef sandwiches and shop-bought cakes; which was a treat for me since we only ever got home-made at home. Granny lived in the same house all her life. My Granda, her husband, died 4 years ago. They had been married for 64 years. Two of her brothers never married and lived their whole lives in the house with her, Granda and their family.
Over the past few years Granny become more frail and my aunt, who continued to live at home when she married and had children, has taken such good care of her. Their house had an open door policy and people were regularly calling in and were always made welcome. Granny loved visitors; knowing what you were up to and where you were going. She enjoyed seeing us dressed up, always saying 'health to enjoy' when we showed off a new outfit. Most of all, she loved to see all the children who came to visit, or my aunt's own grandchildren whom she also cared for. Granny somehow managed to remember all of us and know where we were living and what we were doing with our lives.
Gordon wasn't around. He's on a conference in Korea. But my sister flew in from London, and went with me and the children, back to Granny's house for the wake. Lady had been to my other Granda's wake so knew what to expect, but I explained to Thomas that my Granny's body would be in an open coffin in her bedroom and we could go in to see her. This we all did, and they were not in the least bit fazed. I was upset to see her, especially when I went into the living room and saw the empty space where her chair always sat beside the range cooker.
Duncan didn't like the house full of people, which is only to be expected, so he spent most of the time outdoors. Thankfully, the weather was great. Lady and Thomas also ran around in the garden (which used to be the field I played in) with the other children who were there. I had lots of help looking after Duncan, especially from my Dad (as always) and my brother's girlfriend, who took all my children to her house for a few hours leaving me peace to talk to the relatives, friends and neighbours who were gathered or just paying a short visit. My sister was among those on tea duty. Endless trays of sandwiches and buns were dispensed along with a never ending supply of tea. It used to be worse; I can remember wakes I was at as a child, where there'd be dishes stacked with cigarettes for the visitors!
The funeral was held the next day. The church was packed. A cousin from my mum's side of the family was kind enough to stay in my car with Duncan while he watched a DVD. He'd been crying 'no go into church' when we arrived and there was no way I was going to force him into that big, scary building. Thomas made me laugh during the ceremony; the priest said the line 'where we live forever...' and Thomas said incredulously, 'We live forever?!' Anyway, for a boy not used to church, he behaved wonderfully. In fact all 3 children were marvellous the whole 2 days, and I told them when we were driving home how proud I was of them. I had so many people comment on what lovely children they are. Many of my relatives delighted in Duncan too and commented on how well he's doing. I was a bit concerned by his shouting, especially when he shouted a rude phrase in his discomfort or frustration. Mostly he was very happy, if extremely mobile, and I (and my helpers) did a fair bit of running after him to be sure he stayed away from the open path to the road.
It was sad saying goodbye to Granny. She was a big part of our lives for lots of us. She was always there. But I take comfort in remembering her, and knowing she was happy, in spite of the hard times, hard work and bereavements she lived through. She loved her family, loved a celebration, and will be remembered for a long time to come by great many people.
31 Aug 2007
Best Friends
But to get back to what this blog is really all about, here's a little update on the family.
First, on Monday, we said goodbye to M. the wonderful young woman who has been coming round almost very week for almost a year to play with Duncan and the others. She is starting full-time work as a primary school teacher. She had bought gifts for all 3 children (Underground Ernie engines for the boys- very much appreciated!) and had a lovely card for me, thanking me for inviting her into our home every week.
It had been entirely our pleasure. She is a delightful, kind, fun and intelligent woman. Her class is lucky to have her as their teacher. She was so open to the children, always tried hard to engage Duncan and gained his love in return. She wanted to know a bit about autism to better help any autistic children she may teach. What a special person she is, to have given up her time for free, for that, but mostly to play with a little autistic boy, and to give his mum a bit of time off on a Monday morning.
We will hopefully see her sometimes on the school holidays. I hope so, because we've all made a friend.
And talking of friends, Lady's best friend in the whole wide world came to stay for a few days with her mum and sister. Just like last year when they visited, we all just went right back to familiarity and comfort with each other. This time we went to the Folk and Transport Museums, and S. took the 3 girls on the train to W5. We don't have our 7-seater car anymore so couldn't all fit. They also went to our neighbour's birthday party. Apart from that, we all talked lots and lots, and the children played, dressed-up, created dance sequences to Mika songs...oh my.
I'm so happy that we're still in touch. I'm very fond of them all, and Lady and S. have special bond. When Gordon dropped them at the airport, Lady went too. He told me that she was craning her neck looking out the window as he drove off, and when he asked her to sit back, she had tears running down her face.
First, on Monday, we said goodbye to M. the wonderful young woman who has been coming round almost very week for almost a year to play with Duncan and the others. She is starting full-time work as a primary school teacher. She had bought gifts for all 3 children (Underground Ernie engines for the boys- very much appreciated!) and had a lovely card for me, thanking me for inviting her into our home every week.
It had been entirely our pleasure. She is a delightful, kind, fun and intelligent woman. Her class is lucky to have her as their teacher. She was so open to the children, always tried hard to engage Duncan and gained his love in return. She wanted to know a bit about autism to better help any autistic children she may teach. What a special person she is, to have given up her time for free, for that, but mostly to play with a little autistic boy, and to give his mum a bit of time off on a Monday morning.
We will hopefully see her sometimes on the school holidays. I hope so, because we've all made a friend.
And talking of friends, Lady's best friend in the whole wide world came to stay for a few days with her mum and sister. Just like last year when they visited, we all just went right back to familiarity and comfort with each other. This time we went to the Folk and Transport Museums, and S. took the 3 girls on the train to W5. We don't have our 7-seater car anymore so couldn't all fit. They also went to our neighbour's birthday party. Apart from that, we all talked lots and lots, and the children played, dressed-up, created dance sequences to Mika songs...oh my.
I'm so happy that we're still in touch. I'm very fond of them all, and Lady and S. have special bond. When Gordon dropped them at the airport, Lady went too. He told me that she was craning her neck looking out the window as he drove off, and when he asked her to sit back, she had tears running down her face.
Disagreement
I've noticed a blog post that kindly linked to my own post on the recent Daily Mail 'Monster Autism' story. To reciprocate the link love seems the least I can do!
The writer tackles autism cures;
See, the thing is, that's not what I think a curebie is. There IS NO cure for autism. If somehow one was made available, I would not administer it to my son; I would let him decide for himself when he's old enough if he wanted to have a major and drastic change in his neurological make-up.
I don't understand that last paragraph. What does he mean by 'autistic rights ... expires'? And why point out that parents didn't 'volunteer'. I don't subscribe to the notion that only those who can manage it are 'given' a disabled child either. It just happened, sheer chance. Just like the fact that 2 of my kids have curly hair, 2 of them are boys, one of them happens to be autistic.
Then there's the link to my earlier post;
I just find this odd. The arrival of any child, disabled or not, means that parents have to adjust the expectations of their own life and for a while at least, the child's needs take priority. It doesn't have to mean you live just for your children, that you are a slave to them. But you have to expect that things will change from the entirely different scenario of a child free existence.
The author could really do with reading up on the social model of disability too.
Oh and the blogger known as JB or FS (who called me an ignorant fuck and a despicable hypocrite on my blog) loved it, calling it a 'great post'!
I was surprised that the blog I've mentioned is linked to from the ASD Friendly site, which I used to read and seems to have lots of useful information, and is, as far as I can tell, free from quackery.
The writer tackles autism cures;
If, hypothetically, a cure for autism existed, would you administer it?If you would, then you are a “curebie” and you should expect a vehement response for your opinion. Neurodiversity, as the argument goes, is no less a valid principle than racial or gender diversity. Advocate a cure and you are no better than a racist, a chauvinist, or any other bigot.
See, the thing is, that's not what I think a curebie is. There IS NO cure for autism. If somehow one was made available, I would not administer it to my son; I would let him decide for himself when he's old enough if he wanted to have a major and drastic change in his neurological make-up.
There's a great post here by Abfh called Defining Curebie-ism. I'd agree with her definition of the word.
The blogger continues;
Except we have to pause for a moment and ask who is proposing this particular opinion, and why?
The answer is simple; it is High Functioning autistics and aspies, advocating it because they want to be accepted for who they are, not rejected as freaks. Damned good point. They have every right to be offended and upset by the treatment they often receive. BUT ARE THEY SPEAKING FOR MY SON?
Read this carefully:
NO THEY BLOODY WELL ARE NOT.
There is a big difference - an enormous, fundamental difference between curing someone whose disability prevents them from understanding and adopting the social niceties of life, and curing someone whose disability leads them to smear shit all over their home, beat the crap out of their siblings, and cause sleep deprivation to the point of clinical insanity to their parents.
Autistic rights and the principle of neurodiversity expires when it imposes unreasonable demands upon other people who did not volunteer, and who have rights of their own that are rejected without any thought whatsoever.
I don't understand that last paragraph. What does he mean by 'autistic rights ... expires'? And why point out that parents didn't 'volunteer'. I don't subscribe to the notion that only those who can manage it are 'given' a disabled child either. It just happened, sheer chance. Just like the fact that 2 of my kids have curly hair, 2 of them are boys, one of them happens to be autistic.
Then there's the link to my earlier post;
When I read blogs like this, with comments like this:
Having an autistic child is tough and causes you to change your expectations of family life. Parents who adapt and accept this, and their children, are more likely to thrive.then all I think of are the words “glib,” “patronising” and “bastard.”
Gee, it's nice of you to care.
The delightful man finishes with;
Since when did the arrival of a disabled child mean that parents should renounce their own expectations of life accept the priorities of their child? It doesn’t apply to parents of children with any of the other disabilities I teach - so why the fuck should autism be different?
Why? Because the service providers are ignorant, and because there are too many idiots like AFF and other ‘autism liberationist’ groups who think that their needs are best met by stamping underfoot the needs of their carers.
Wake up and smell the coffee, guys - you have a disability. It imposes burdens of care upon others that are only met by emotional bonds and goodwill. Stop taking the piss, otherwise you might find the goodwill has a short shelf life.
I just find this odd. The arrival of any child, disabled or not, means that parents have to adjust the expectations of their own life and for a while at least, the child's needs take priority. It doesn't have to mean you live just for your children, that you are a slave to them. But you have to expect that things will change from the entirely different scenario of a child free existence.
The author could really do with reading up on the social model of disability too.
Oh and the blogger known as JB or FS (who called me an ignorant fuck and a despicable hypocrite on my blog) loved it, calling it a 'great post'!
I was surprised that the blog I've mentioned is linked to from the ASD Friendly site, which I used to read and seems to have lots of useful information, and is, as far as I can tell, free from quackery.
27 Aug 2007
Happy Holiday
We all had a marvelous time on holiday in Donegal. Even the weather was surprisingly fine. Though, last Saturday, when we arrived at the caravan park, it was fairly bleak; wet and windy. We all donned boots and rain coats for our first walk around the site. Duncan got soaked, because as far as he was concerned, when you're wearing wellies, you're supposed to jump into every puddle! He was running along a muddy path, through a patch of puddles, saying 'Big Thunder Mountain!' He was pretending to be the coaster splashing through the water.
By Sunday afternoon it had dried up and from then on it stayed mostly dry with just a few light showers once or twice. Knowing the climate in Donegal, and given what an awful summer we've had so far, that was astounding...and welcome.
The site had a great playground, a couple of bouncy castles, a climbing wall and a bungee-jump-trampoline thing. There were little go-kart bikes and a bike that the whole family could ride, with the adults steering and peddling. I also made use of the laundry; just 'cause we're on holiday doesn't mean everyones bladders last the night.
Duncan loved the go-kart, and took one out for a while every day. Whoever was accompanying him had to run fast to keep up. But what was great about the place, was we didn't need to be right there at his side all the time. We could let him go off 30m or so in front of us, knowing that he was safe enough.
Lady and Thomas were allowed to go to the playground without us. It was such a big deal to them, getting that little bit of freedom. Thomas made friends immediately, he just asked the other children if they wanted to play with him. Lady did as she always has, and waited for the other children to approach her. By the end of the week they both had a little gang of buddies. The site provided a sort of summer club, with organised and supervised activities for the children. Lady and Thomas went to several of these; tennis, rounders, arts and crafts, football, dance-camp etc. Watching Thomas play football was hilarious. He was all effort and no effect. He ran around lots, always making a big dramatic start like Sportacus.
The site was in the Fanad Peninsula, a stunning part of the country and we enjoyed some beautiful views driving around. Duncan was frightened when we were on the mountain roads, especially whenever we stopped the car or when there was a panoramic view over the sea. The steep inclines worried him too. He was saying, 'brakes, brakes Mr Conductor', 'I don't want to die!' and 'hold back, hold back' as well as a few other train related phrases. I held his hand and kept reassuring him that we were fine and safe, that Daddy was driving very carefully and he seemed to be mollified.
We went to the beach a few times. One trip was to Ballymastocker Bay, right at the north of Fanad head. This beach didn't border a mere lough, this looked onto the wide Atlantic Ocean. We'd bought short wetsuits for the children, and they had such a magical time splashing in the sea and digging and rolling down sand dunes and clambering over rocks. It was actually warm and sunny that day (I topped up my farmer's tan). Gordon and I sat on the soft sand, away from the children on the nearly deserted beach, watching them and enjoying a moment of perfect happiness. (Image taken from the Donegal Ancestry Centre website; we forgot the camera that day.)
Of course we all had our moments of sub-optimal temper. But we always got over it. Even on the last night, when there was a little concert organised as an opportunity for the children to show off the songs and dances they'd learned in dance-camp, Duncan was manageable. He stayed outside the barn which was serving as the concert hall and was too noisy and crowded inside for him. He passed the time riding a tricycle up and down a wooden ramp. Gordon and I took it in turn to stay outside or to stand in the doorway, so we could keep an eye on Duncan, while watching the show.
Thomas and lady were taking part in the concert. In their first number, they were doing a wee dance. Thomas performed the whole thing with his back to the audience. It wasn't that he was shy, it just never seemed to occur to him to face us! He did better the next time (after I reminded him that we did want to see him!) and was so funny shaking his little booty. Lady had her big moment in the spotlight, when she and another girl took the mike to sing 'Chim Chiminee' (from Mary Poppins) and she did great!
Anyway, we're home again and glad to be back. When we were leaving, lady and Thomas said they wanted to go back to the same place next year. I asked Duncan if he wanted to go there again too, he said 'Yes I did!'
By Sunday afternoon it had dried up and from then on it stayed mostly dry with just a few light showers once or twice. Knowing the climate in Donegal, and given what an awful summer we've had so far, that was astounding...and welcome.
The site had a great playground, a couple of bouncy castles, a climbing wall and a bungee-jump-trampoline thing. There were little go-kart bikes and a bike that the whole family could ride, with the adults steering and peddling. I also made use of the laundry; just 'cause we're on holiday doesn't mean everyones bladders last the night.
Duncan loved the go-kart, and took one out for a while every day. Whoever was accompanying him had to run fast to keep up. But what was great about the place, was we didn't need to be right there at his side all the time. We could let him go off 30m or so in front of us, knowing that he was safe enough.
Lady and Thomas were allowed to go to the playground without us. It was such a big deal to them, getting that little bit of freedom. Thomas made friends immediately, he just asked the other children if they wanted to play with him. Lady did as she always has, and waited for the other children to approach her. By the end of the week they both had a little gang of buddies. The site provided a sort of summer club, with organised and supervised activities for the children. Lady and Thomas went to several of these; tennis, rounders, arts and crafts, football, dance-camp etc. Watching Thomas play football was hilarious. He was all effort and no effect. He ran around lots, always making a big dramatic start like Sportacus.
The site was in the Fanad Peninsula, a stunning part of the country and we enjoyed some beautiful views driving around. Duncan was frightened when we were on the mountain roads, especially whenever we stopped the car or when there was a panoramic view over the sea. The steep inclines worried him too. He was saying, 'brakes, brakes Mr Conductor', 'I don't want to die!' and 'hold back, hold back' as well as a few other train related phrases. I held his hand and kept reassuring him that we were fine and safe, that Daddy was driving very carefully and he seemed to be mollified.
We went to the beach a few times. One trip was to Ballymastocker Bay, right at the north of Fanad head. This beach didn't border a mere lough, this looked onto the wide Atlantic Ocean. We'd bought short wetsuits for the children, and they had such a magical time splashing in the sea and digging and rolling down sand dunes and clambering over rocks. It was actually warm and sunny that day (I topped up my farmer's tan). Gordon and I sat on the soft sand, away from the children on the nearly deserted beach, watching them and enjoying a moment of perfect happiness. (Image taken from the Donegal Ancestry Centre website; we forgot the camera that day.)Of course we all had our moments of sub-optimal temper. But we always got over it. Even on the last night, when there was a little concert organised as an opportunity for the children to show off the songs and dances they'd learned in dance-camp, Duncan was manageable. He stayed outside the barn which was serving as the concert hall and was too noisy and crowded inside for him. He passed the time riding a tricycle up and down a wooden ramp. Gordon and I took it in turn to stay outside or to stand in the doorway, so we could keep an eye on Duncan, while watching the show.
Thomas and lady were taking part in the concert. In their first number, they were doing a wee dance. Thomas performed the whole thing with his back to the audience. It wasn't that he was shy, it just never seemed to occur to him to face us! He did better the next time (after I reminded him that we did want to see him!) and was so funny shaking his little booty. Lady had her big moment in the spotlight, when she and another girl took the mike to sing 'Chim Chiminee' (from Mary Poppins) and she did great!
Anyway, we're home again and glad to be back. When we were leaving, lady and Thomas said they wanted to go back to the same place next year. I asked Duncan if he wanted to go there again too, he said 'Yes I did!'
17 Aug 2007
Daily Mail; 'My son is a monster with autism'
I know I shouldn't. It's in the Mail..ignore it! They always print junk. (Melanie Phillips, anyone?!) But this article is just too horrible. I left a comment which will probably not be published. I have left critical comments before on Mail articles, (autism and MMR junk usually) and they have never been published. So I wanted to copy the comment here instead.
'My son is a monster with autism'
By JAN GREENMAN
I wrote;
There I ran out of characters.
But I did so want to say, '*edited bit. Go read a bit about your son's condition, learn from people who's brains are wired like his (NOT 'wired up wrongly in many ways'). Have you ever heard of the concept of diversity?
I managed to restrain myself, until now.
(PS, We're all going on holiday for a week from tomorrow. I will pack my children's favourite foods and toys, take familiar comfort objects and it WILL NOT be a nightmare!)
OK, breathe...feeling calm. Bye!
*I have edited this post to remove an personally insulting comment I had written.
Sharon
'My son is a monster with autism'
By JAN GREENMAN
I wrote;
This is a very disturbing article using horrible language; 'monster', 'the end of safety, normality and reason', 'I have felt, at times, like killing Luke when he has hurt her.' There are no words of love or understanding for her son's needs and differences.
I have an autistic son. I have worked hard to understand his needs, his sensory preferences. Perhaps the boy destroyed the M&S coat as it felt horrible to him? Did this mum try to make things easier for him, for example, offer him a quiet room or headphones when his baby sister's crying was bothering his extra sensitive hearing? He is absolutely aware of she feels about him and it will no doubt have caused him so much stress.
Having an autistic child is tough and causes you to change your expectations of family life. Parents who adapt and accept this, and their children, are more likely to thrive.
Good luck to Luke in his new school. Be proud of yourself, and you'll find a community of people like you out there to embrace you.
There I ran out of characters.
But I did so want to say, '*edited bit. Go read a bit about your son's condition, learn from people who's brains are wired like his (NOT 'wired up wrongly in many ways'). Have you ever heard of the concept of diversity?
I managed to restrain myself, until now.
(PS, We're all going on holiday for a week from tomorrow. I will pack my children's favourite foods and toys, take familiar comfort objects and it WILL NOT be a nightmare!)
OK, breathe...feeling calm. Bye!
*I have edited this post to remove an personally insulting comment I had written.
Sharon
16 Aug 2007
Engines, caterpillars and falling over
I was talking with Duncan about Lady's birthday. I said, 'Lady is 9 now.'
'NO! Lady not 9, Lady is 5!'
'Oh, and how old is Duncan?'
No answer
'Is Duncan 7?'
'No, Duncan is 6.'
'And what about Thomas, what age is he...what number is he?'
Thomas is 1. Daddy is 4 and Mummy is 2.'
Then I got it. Duncan has assigned his own Thomas the Tank Engine names to everyone in the family, and a few friends and extended family members too, and he prefers to use our engine numbers, not our ages. Here's his version;
In fact, for any person I mention, he'll think for a while and then assign an engine or character name and he's always consistent in who's called what.
This summer, a fun fair has set up in our local town. One of the rides is a caterpillar roller coaster for children. Duncan remembered it from last year, and is fascinated by it. We have had to go down to the fair many times this year, on little pilgrimages so he can stand in awe watching this marvelous and slightly scary contraption. He asks me to 'go to see caterpillar train...sit on bench. Not ride! Just watch.'
So we go, and he delights in watching the thing, and the others run after pigeons or circle the fountain and we usually all get a ice-cream (a 99) to make it all worth while. Last week, he wanted to go a bit closer, so we went into the fair area and stood right beside the ride. After watching it go a few times, he decided he wanted to try it so on we went. He was a bit frightened and was softly saying 'stop, stop, get off, I don't want to die.' (The line about dieing is a quote from somewhere and he uses it to mean... I'm a bit worried.) I held him and told him it was safe, it's just a ride, we go round 3 times then it stops and we get off. By the end he was sort of getting used to it but we were both relieved when it was over. However as soon as he got off Lady and Thomas ran up to hug him and were all excited that he'd done it. I was telling them 'Duncan was a bit scared, caterpillar trains are a bit fast and scary' He corrected me saying, 'not scary, Duncan is happy.'
I don't think he'll want to go on again in a hurry, but he's pleased to have experienced it for himself just that once.
Right now, the boys are eating cookies that Duncan and I just baked. Lady is at summer scheme for the last time this summer. And I've just answered the door to some annoying man offering to clean the gutters and making fun of the cuts on my face; 'Did you fall over? Was there drink involved?'
Oh god how hilarious.
Oh yeah, I fell over, and there wasn't any ice involved this time. Yesterday evening I had to ask our neighbour about something and Lady came out after me leaving the front door open. So Duncan came out too and didn't want to go home. I played a bit, running after him and pretending to 'get' him. Then I managed to lead him indoors, and he asked to ring the door bell. I know he likes to do this sometimes on his way in, so I opened the front door again. But instead of ringing the bell he dashed off towards the gate. I ran after him; he stopped suddenly in front of me, and I just had too much momentum to stop myself in time. I ran into him and tripped up, crashing over him, bashing my face hard on the tarmac, ripping out the knee in my jeans and cutting my knee, and hurting poor little Duncan's side as he was trapped under me.
It all hurt a lot, and Duncan was so annoyed to see me bleeding. He said, 'Mummy no cut. Bleeding tomorrow. New skin will come.' He was kissing and fussing me, even though he'd been hurt himself. Anyway, the children were all so sweet and Lady told me to lie down and they tidied up. Gordon came home and doctored me, buying steri-strips to seal the still bleeding wound.
But flipin' 'eck, I'm not used to this pain. How do kids cope with all the cut knees and whatnot they get?
'NO! Lady not 9, Lady is 5!'
'Oh, and how old is Duncan?'
No answer
'Is Duncan 7?'
'No, Duncan is 6.'
'And what about Thomas, what age is he...what number is he?'
Thomas is 1. Daddy is 4 and Mummy is 2.'
Then I got it. Duncan has assigned his own Thomas the Tank Engine names to everyone in the family, and a few friends and extended family members too, and he prefers to use our engine numbers, not our ages. Here's his version;
- Lady - James (no. 5)
- Duncan - Percy (no. 6)
- Thomas - Thomas (no. 1)
- me - Edward (no. 2)
- Gordon - Gordon (no 4)
- Grandma - The Fat Controller (no number!)
- Granda - Henry (no. 3)
- G. (my step-mum) - Diesel 10
- M. (NAS befriender) - Oliver the Great Western Engine (no 11)
- C. (my sister) - Mavis
In fact, for any person I mention, he'll think for a while and then assign an engine or character name and he's always consistent in who's called what.
This summer, a fun fair has set up in our local town. One of the rides is a caterpillar roller coaster for children. Duncan remembered it from last year, and is fascinated by it. We have had to go down to the fair many times this year, on little pilgrimages so he can stand in awe watching this marvelous and slightly scary contraption. He asks me to 'go to see caterpillar train...sit on bench. Not ride! Just watch.'
So we go, and he delights in watching the thing, and the others run after pigeons or circle the fountain and we usually all get a ice-cream (a 99) to make it all worth while. Last week, he wanted to go a bit closer, so we went into the fair area and stood right beside the ride. After watching it go a few times, he decided he wanted to try it so on we went. He was a bit frightened and was softly saying 'stop, stop, get off, I don't want to die.' (The line about dieing is a quote from somewhere and he uses it to mean... I'm a bit worried.) I held him and told him it was safe, it's just a ride, we go round 3 times then it stops and we get off. By the end he was sort of getting used to it but we were both relieved when it was over. However as soon as he got off Lady and Thomas ran up to hug him and were all excited that he'd done it. I was telling them 'Duncan was a bit scared, caterpillar trains are a bit fast and scary' He corrected me saying, 'not scary, Duncan is happy.'
I don't think he'll want to go on again in a hurry, but he's pleased to have experienced it for himself just that once.
Right now, the boys are eating cookies that Duncan and I just baked. Lady is at summer scheme for the last time this summer. And I've just answered the door to some annoying man offering to clean the gutters and making fun of the cuts on my face; 'Did you fall over? Was there drink involved?'
Oh god how hilarious.
Oh yeah, I fell over, and there wasn't any ice involved this time. Yesterday evening I had to ask our neighbour about something and Lady came out after me leaving the front door open. So Duncan came out too and didn't want to go home. I played a bit, running after him and pretending to 'get' him. Then I managed to lead him indoors, and he asked to ring the door bell. I know he likes to do this sometimes on his way in, so I opened the front door again. But instead of ringing the bell he dashed off towards the gate. I ran after him; he stopped suddenly in front of me, and I just had too much momentum to stop myself in time. I ran into him and tripped up, crashing over him, bashing my face hard on the tarmac, ripping out the knee in my jeans and cutting my knee, and hurting poor little Duncan's side as he was trapped under me.
It all hurt a lot, and Duncan was so annoyed to see me bleeding. He said, 'Mummy no cut. Bleeding tomorrow. New skin will come.' He was kissing and fussing me, even though he'd been hurt himself. Anyway, the children were all so sweet and Lady told me to lie down and they tidied up. Gordon came home and doctored me, buying steri-strips to seal the still bleeding wound.
But flipin' 'eck, I'm not used to this pain. How do kids cope with all the cut knees and whatnot they get?
14 Aug 2007
Birthdays!
On Friday, Lady was 9. Yesterday, Gordon's mum was 80. It's been birthday season round here.
Lady wanted to have her party on Saturday and have a family day on Friday. We all went for lunch at Mc's (her choice) then on to one of those indoor play centres. They scampered and climbed and jumped for an hour. Duncan really resisted going in at first, since we'd never been to that particular place before. I asked him if he wanted to just go in to watch Lady and Thomas, which he did. Then he saw a 'Tweenies' ride on toy, which he examined for a while, then a vending machine, reminding him of the vending machine on one of their PC learning games, since he repeated the dialogue about 'entering the exact change'. Soon he was off running, though he stopped every few minutes beside the vending machine, and before we left I gave him some money to buy a bag of sweets. He knew just how to use it too!
That evening, the 'summer ball' (ie dinner and disco) organised by some gregarious folk at Gordon's work was held. We both went, and it's the first time I've met some of his colleagues. It was a good night out too. I think a few people were somewhat surprised to see Gordon dance, having pegged him as some kind of swotty professor type (which he is) but he's also big into his music. It's not as easy to categorise people as it might appear!
We had several friends over for the party on Saturday, and the children all enjoyed themselves, despite the rotten wet weather. (Lady was out dancing barefoot in the rain by the end of the day!) A new friend she met at summer scheme was the only child there not home-educated. Two sets of school going friends couldn't make it. Some of our grown up (well they act that way most of the time) friends were there too so we wiled the afternoon away, eating and chatting. I especially enjoyed playing with little A, just turned 2, and utterly gorgeous.
We took it easy on Sunday, after all those revelries. We went out for a walk on Sunday only to be caught in the rain. No surprises there! In the evening, Lady and I went ice-skating. We last went about 2 years ago and she never made it onto the ice at all. Now however, she was great. I however, fell over 3 times and drove home with a wet backside!
There were more celebrations on Monday. Gordon's mum was 80, though she really doesn't look it. We went into Belfast for dinner at the Merchant House hotel. The restaurant there is bonkers! It looks like a bit of Versailles in the middle of Belfast; gilt and cherubs and a huge chandelier. It was fabulous. E. loved it. Moreover, the meal was wonderful, so it was a lovely, special night. I'd made a little cake which the children helped me to decorate, so we did the cake ceremony in her house before going home. M, our NAS befriender, babysat.
Also celebrating her birthday yesterday, was my step-sister G. She lives in England, and is due to have her much longed for baby any day now. My dad and her mum are over for a few weeks for the big event. So birthday waves across the Irish Sea to G. too!
Lady wanted to have her party on Saturday and have a family day on Friday. We all went for lunch at Mc's (her choice) then on to one of those indoor play centres. They scampered and climbed and jumped for an hour. Duncan really resisted going in at first, since we'd never been to that particular place before. I asked him if he wanted to just go in to watch Lady and Thomas, which he did. Then he saw a 'Tweenies' ride on toy, which he examined for a while, then a vending machine, reminding him of the vending machine on one of their PC learning games, since he repeated the dialogue about 'entering the exact change'. Soon he was off running, though he stopped every few minutes beside the vending machine, and before we left I gave him some money to buy a bag of sweets. He knew just how to use it too!
That evening, the 'summer ball' (ie dinner and disco) organised by some gregarious folk at Gordon's work was held. We both went, and it's the first time I've met some of his colleagues. It was a good night out too. I think a few people were somewhat surprised to see Gordon dance, having pegged him as some kind of swotty professor type (which he is) but he's also big into his music. It's not as easy to categorise people as it might appear!
We had several friends over for the party on Saturday, and the children all enjoyed themselves, despite the rotten wet weather. (Lady was out dancing barefoot in the rain by the end of the day!) A new friend she met at summer scheme was the only child there not home-educated. Two sets of school going friends couldn't make it. Some of our grown up (well they act that way most of the time) friends were there too so we wiled the afternoon away, eating and chatting. I especially enjoyed playing with little A, just turned 2, and utterly gorgeous.
We took it easy on Sunday, after all those revelries. We went out for a walk on Sunday only to be caught in the rain. No surprises there! In the evening, Lady and I went ice-skating. We last went about 2 years ago and she never made it onto the ice at all. Now however, she was great. I however, fell over 3 times and drove home with a wet backside!
There were more celebrations on Monday. Gordon's mum was 80, though she really doesn't look it. We went into Belfast for dinner at the Merchant House hotel. The restaurant there is bonkers! It looks like a bit of Versailles in the middle of Belfast; gilt and cherubs and a huge chandelier. It was fabulous. E. loved it. Moreover, the meal was wonderful, so it was a lovely, special night. I'd made a little cake which the children helped me to decorate, so we did the cake ceremony in her house before going home. M, our NAS befriender, babysat.
Also celebrating her birthday yesterday, was my step-sister G. She lives in England, and is due to have her much longed for baby any day now. My dad and her mum are over for a few weeks for the big event. So birthday waves across the Irish Sea to G. too!
Autism and Thomas trains
A few weeks back, the NAS were promoting a small survey they'd commissioned about Thomas the Tank Engine and autism. It was mentioned in the Guardian, and on the NAS site. A PDF of the report is available here.
Not surprisingly, given the names on our blog and what any regular reader knows about my son, when I saw the questionnaire on the NAS site and in their newsletter, I decided to respond. I'd imagine many others also took part because their autistic children are so into Thomas, so it's not exactly unbiased!
Anyway, it's interesting to read and here are a few quotes from the PDF report.
Some, well seemingly many, autistic children just really like the Thomas stuff and learn from it. This is intrinsic learning in action. It demonstrates that you don't need to have a marketed therapy to get through to your child, you just need to see what interests them and go from there together. Now if anyone tries to market 'Thomas Therapy TM' I'll scream!
Some of the quotes in the report include;
Any of the above sound familiar! :-)
I like that last quote too, it's stuff that we do. That 4 year old's parent and me would just 'get' each others ways of interacting with our children.
Not surprisingly, given the names on our blog and what any regular reader knows about my son, when I saw the questionnaire on the NAS site and in their newsletter, I decided to respond. I'd imagine many others also took part because their autistic children are so into Thomas, so it's not exactly unbiased!
Anyway, it's interesting to read and here are a few quotes from the PDF report.
The research
A survey with parents of children with autism under the age of 10 was launched on the NAS’s website in April 2007 with nearly 750 people taking part. Ten telephone and face-to-face interviews were also conducted with parents of children with autism aged between four and nine years old. Four parents in England, two in Wales, two in Scotland and two in Northern Ireland took part.
Summary of research findings
Some of the main findings are:
• In a comparison with other popular children’s characters, Thomas & Friends was the most popular, with nearly 90% of children liking it ‘very much’.
• Many parents felt that Thomas & Friends played a significant part in their child’s early learning and development – in particular numbers, colours and language.
• Some children in the study have been able to learn basic facial expressions and emotions from Thomas & Friends.
• Parents have been able to use Thomas & Friends’ ‘language’ to communicate with their child where ordinary language has failed.
• Almost 39% of parents reported that their child’s interest in Thomas & Friends lasted over two years longer than siblings’ interest in the character.
• Highly important aspects of the relationship for parents were the feeling of safety and security Thomas & Friends provides for children and its calming effect.
Some, well seemingly many, autistic children just really like the Thomas stuff and learn from it. This is intrinsic learning in action. It demonstrates that you don't need to have a marketed therapy to get through to your child, you just need to see what interests them and go from there together. Now if anyone tries to market 'Thomas Therapy TM' I'll scream!
Some of the quotes in the report include;
“Thomas & Friends has definitely been one of the elements that has helped him to recognise human facial expressions and to label his own emotions.”
Parent of seven year old with autism.
...
Their intense interest in Thomas & Friends seems to have been of some help in enabling children with autism and their siblings to interact, even if this is only that they watch a Thomas & Friends DVD together.
“R will play alongside his brother and sister with the trains and tracks. His sister will tell a story with the trains and sometimes R will join in but I don’t think he really understands. He prefers to go over the same stories from the DVDs. He does like to crash the trains into each other with his brother though!”
Parent of seven year old with autism.
...
Communication connection
Interestingly, some parents have found that they can communicate with their child and manage their behaviour using Thomas & Friends’ language and terminology, where ‘ordinary’ language has failed.
“We use lots of Thomas language to communicate with B and get him to do things, such as a ‘washdown’ for a bath, telling him he’s ‘really useful’, ‘chugging up’ to bed, and ‘red light’ or ‘the signal is up’ for no or stop.”
Parent of four year old with high-functioning autism
Any of the above sound familiar! :-)
I like that last quote too, it's stuff that we do. That 4 year old's parent and me would just 'get' each others ways of interacting with our children.
8 Aug 2007
London Trip
A few weeks back, Gordon and I went to London for 2 nights while my dad and step-mum minded the children. Gordon was to be awarded Fellowship of the Royal College of Physicians; pretty impressive! We arrived on Monday afternoon and stayed in a nice hotel near the Natural History Museum, so obviously we went to see the dinosaurs. In the evening we met up with my sister and had a lovely evening chatting and having cocktails and noodles. The next day we walked around some of our old haunts, then along the river, stepping into the Tate for a while. It'd have been nice to see the Dali exhibition but having Dim Sum in the Harbour City took priority! Then we got dressed up and went to the award ceremony for an afternoon of pomp and splendour at the Royal College. It was a short and surprisingly (to me) interesting event. The president spoke to Gordon straight after, complimenting him on a talk of his he'd heard a few months back. (Look, I boast about the kids often enough, so just allow me this!)
That evening we ate in a super fine Indian restaurant in Knightsbridge called Amaya. We were seated close to the open kitchen, and saw the racks of kebabs and the variety of grills and ovens used. The food was lovely, and included the tastiest potato dish ever. The clientele looked like what used to be known an yuppies. Though to be honest, for a while there, I was one of those NIPPLES myself (New Irish Professional Person Living in England). Walking back to the hotel took us past the convoys of Lamborghinis that some of the ultra rich London dwellers seem to think of as the perfect city vehicle.
On our last morning in London, we dressed up again and went out to enjoy the highlight of our trip; lunch at the Restaurant Gordon Ramsey. This seemed to be a good spot for a celebratory meal. It was the most delicious meal I have ever eaten and we lingered for two hours. Forget FRCP, this was why we'd come to London!
We'd time to kill before heading out to the airport so we went to the Science Museum, still all dolled-up. I discovered I now have a much deeper appreciation for and understanding of, the steam engines on display, thanks to Duncan. We had a quick walk round the 'History of Medicine' display too. There was a bit written about fMRI and autism, including some typical misinformation about how those with the 'disorder' lack empathy, as well as something about developing cures. I should have photographed it. It's something I should investigate further, and perhaps some pressure could be put on them to change the wording.
We got home quite late and learned that the children had all been great. Lady had started summer scheme, Duncan and his Granda had spent a lovely long afternoon on the beach together, and they'd all been treated to trips to the park and ice-creams and the kind of loving attention only grandparents can give.
That evening we ate in a super fine Indian restaurant in Knightsbridge called Amaya. We were seated close to the open kitchen, and saw the racks of kebabs and the variety of grills and ovens used. The food was lovely, and included the tastiest potato dish ever. The clientele looked like what used to be known an yuppies. Though to be honest, for a while there, I was one of those NIPPLES myself (New Irish Professional Person Living in England). Walking back to the hotel took us past the convoys of Lamborghinis that some of the ultra rich London dwellers seem to think of as the perfect city vehicle.
On our last morning in London, we dressed up again and went out to enjoy the highlight of our trip; lunch at the Restaurant Gordon Ramsey. This seemed to be a good spot for a celebratory meal. It was the most delicious meal I have ever eaten and we lingered for two hours. Forget FRCP, this was why we'd come to London!
We'd time to kill before heading out to the airport so we went to the Science Museum, still all dolled-up. I discovered I now have a much deeper appreciation for and understanding of, the steam engines on display, thanks to Duncan. We had a quick walk round the 'History of Medicine' display too. There was a bit written about fMRI and autism, including some typical misinformation about how those with the 'disorder' lack empathy, as well as something about developing cures. I should have photographed it. It's something I should investigate further, and perhaps some pressure could be put on them to change the wording.
We got home quite late and learned that the children had all been great. Lady had started summer scheme, Duncan and his Granda had spent a lovely long afternoon on the beach together, and they'd all been treated to trips to the park and ice-creams and the kind of loving attention only grandparents can give.
26 Jul 2007
Cosmological Theory
Says Thomas, 'Mummy, I know what there is on top of space. There are loads of numbers. And after all the numbers, it's the Giant Causeway*. So you have, earth, space, numbers then the Giant Causeway.'
The Giant's Causeway, as it's more commonly known, is a dramatic collection of mostly hexagonal basalt columns on the north coast.
The Giant's Causeway, as it's more commonly known, is a dramatic collection of mostly hexagonal basalt columns on the north coast.
20 Jul 2007
Stories and Speech
There's definitely an air of Harry Potter fever around here. I'm hoping it stays dry tonight as Lady and I are planning to queue up outside the bookshop at midnight to buy 'The Deathly Hallows'. We are very excited to see how it all ends, having enjoyed and discussed all the previous books in great detail. Lady has been telling me some of her latest theories, most of which involve Poly-juice potion. She's convinced Snape is evil, while I'm of the opposite opinion. Can't wait to find out! I'll read lots of it aloud tomorrow, so we can enjoy the story together. We all went to see the 'Order of the Phoenix' film the day after it was released. (We couldn't go on July 12th, since that other Order, the Order of the Orange, were having their wee walks around various towns and we just stayed at home well away from it all.) The film was great. We went to an early show and there were only a few others in the cinema with us.
As I write, Lady and Thomas are playing the HP PC game. Duncan has been customising his trains. He keeps painting them with the watercolours paints. He wanted the red trim at the bottom of each engine to be lighter, so he mixes a bit of red and white to make it just right.
One of his favourite toys these days, is a wipe clean drawing board, that scrolls between 4 screens, and allows for a short commentary on each screen. Duncan just uses it as a dictaphone. He keeps recording little songs or phrases and playing them back. It's hilarious! He has made the rest of us speak into it too, telling us what to say. Lady had to repeat the expression 'G for gow, G for gow, ow, ow.' What it means or where it came from, I've no idea. There's a song he sings, it's either, 'I'm a robber man' or 'I'm a rubber man'. But he shouts it really loud in this harsh rock star voice. As expected, there've been several word perfect recordings of classic Thomas The Tank Engine stories too.
Duncan's speech continues to improve. He now gives me more complicated instructions like, 'Put the 2 keys in the cupboard downstairs, now.' It's a far cry from when he was almost 3, and I got all excited because he looked at a plane flying overhead and muttered something which sounded like it may have been the word 'plane'. He only knew about 10 words when he was 3.
He's commenting on stories I'm reading. I was reading Snow White, and he kept looking at the picture of Snow White's mother, then one of the evil queen. After a lot of thought, he told me that 'the nice queen turned into nasty queen.' He got upset when I read about the woodcutter's instructions to kill the girl, saying 'no die! No Snow White die!' and was relieved when she got away safely. He tells the story back now, with a bit of prompting, and always emphasises that Snow White does NOT die.
Thomas was talking about something peculiar Duncan did, and said he was a bit like an alien. He didn't say it in a mean way at all. It seemed he was trying to find words to express the differences between Duncan and himself and other boys. I said, 'Duncan's not an alien. He's a boy like you. He's autistic and just does some things differently to you because of his autism.'
We'll just keep talking about these sorts of things as we go. There won't be any need for a big conversation, a big revealing of the family secret, because everyone is growing up knowing about and accepting of, autistic differences.
As I write, Lady and Thomas are playing the HP PC game. Duncan has been customising his trains. He keeps painting them with the watercolours paints. He wanted the red trim at the bottom of each engine to be lighter, so he mixes a bit of red and white to make it just right.
One of his favourite toys these days, is a wipe clean drawing board, that scrolls between 4 screens, and allows for a short commentary on each screen. Duncan just uses it as a dictaphone. He keeps recording little songs or phrases and playing them back. It's hilarious! He has made the rest of us speak into it too, telling us what to say. Lady had to repeat the expression 'G for gow, G for gow, ow, ow.' What it means or where it came from, I've no idea. There's a song he sings, it's either, 'I'm a robber man' or 'I'm a rubber man'. But he shouts it really loud in this harsh rock star voice. As expected, there've been several word perfect recordings of classic Thomas The Tank Engine stories too.
Duncan's speech continues to improve. He now gives me more complicated instructions like, 'Put the 2 keys in the cupboard downstairs, now.' It's a far cry from when he was almost 3, and I got all excited because he looked at a plane flying overhead and muttered something which sounded like it may have been the word 'plane'. He only knew about 10 words when he was 3.
He's commenting on stories I'm reading. I was reading Snow White, and he kept looking at the picture of Snow White's mother, then one of the evil queen. After a lot of thought, he told me that 'the nice queen turned into nasty queen.' He got upset when I read about the woodcutter's instructions to kill the girl, saying 'no die! No Snow White die!' and was relieved when she got away safely. He tells the story back now, with a bit of prompting, and always emphasises that Snow White does NOT die.
Thomas was talking about something peculiar Duncan did, and said he was a bit like an alien. He didn't say it in a mean way at all. It seemed he was trying to find words to express the differences between Duncan and himself and other boys. I said, 'Duncan's not an alien. He's a boy like you. He's autistic and just does some things differently to you because of his autism.'
We'll just keep talking about these sorts of things as we go. There won't be any need for a big conversation, a big revealing of the family secret, because everyone is growing up knowing about and accepting of, autistic differences.
11 Jul 2007
The Steam Train
On Sunday, (after I'd calmed down a bit, he he) we all got in the car and went to one of our favourite places, the Railway Museum. We rode in the steam train, and the children each bought a little gift in the shop. This shop is a Thomas the Tank Engine mecca.
It was nice, and Duncan loved watching the engine back onto the carriages and seeing the man couple them together. The best bit was when he was able to watch the driver shoveling coal on the fire. We rode the train twice, and the second time it was raining. We had no coats, but Duncan still wanted to watch the engine shifting from one end of the train to the other, so I had to stand in the rain with him. We were the only people out there!
It was nice, and Duncan loved watching the engine back onto the carriages and seeing the man couple them together. The best bit was when he was able to watch the driver shoveling coal on the fire. We rode the train twice, and the second time it was raining. We had no coats, but Duncan still wanted to watch the engine shifting from one end of the train to the other, so I had to stand in the rain with him. We were the only people out there!
Beautiful Words by Bullet
I read a beautiful post on the Autism Parents Forum by the woman who has become the heart of that growing group of people wanting to help their children, while loving them for who they are. I asked for, and was granted, permission to copy what she wrote here.
The poster known as Bullet wrote;
The poster known as Bullet wrote;
Do not tell me that you hope he will be cured, because then you will tell me he will lose his fantastic memory, the way he can whizz through a jigsaw puzzle after only just seeing it, the way he can recite whole poems and stories, even if he hasn't heard them in a while.
Do not tell me that he will grow out of it, because then he will lose the way he kisses with his forehead and plays with my hair and touches my face, not because he wants sweets, or to stay up for a bit longer, but because he loves me, nothing more complicated than that.
Do not say he cannot learn, because he perceives the world in a different way to you. See him remember places he's not been to in months and watch him read numbers, know colours, shapes and letters and then dare to say he cannot learn, because he can't ask for a drink.
Do not demand vocalised speech for him as the be all and end all, let it be his choice and give him other options. Do not presume that silence means compliance, that a failure to say if something is wrong means that everything is right. Let him sign, draw, write, talk, whatever he needs to get his point across and never, ever belittle him for not opening his mouth, or for opening his mouth and communicating in a way that may seem strange to you.
Do not presume to think his worth can be measured on how social he is, how much peer pressure he succumbs to as he gets older, how much he is able to network. As he grows, let his worth be measured on the respect he gives others, on his sense of justice and mercy, on his willingness to help those in need if he is capable of that help.
Do not take my smart, funny, affectionate little boy and try and mould him into your rigidly defined views of what is socially acceptable. Let him learn, let him develop and let him understand that his value in the world is as equal as yours.
9 Jul 2007
Autism and the MMR; bovine excrement.
I am riled. Yesterday, I was having a nice morning, espresso and chocolate croissants for breakfast, chatting with Gordon about stuff. He started to read The Observer online and shared the top story with me; New health fears over big surge in autism.
I initially wondered what the new 'health fear' was. Had someone identified a link between autism and some illness or other? As we read, it became clear that autism was the health problem.
The article subtitle sets the agenda right away;
It was to be an MMR story. I was fully expecting the testimony from the USA vaccine litigation to be revealed, since it's so recent and so relevant. The expert testimony of Dr Stephen Bustin (blogged so well by Autism Diva), destroyed the credibility of those claiming to link MMR to autism, via the 'evidence' of measles virus in the tested children's guts. Dr Bustin examined the lab responsible for analysing the samples, and was able to prove that they had only ever detected false positives. There was no evidence of measles in any of the samples, whatsoever.
Also in the same trial, the evidence of Dr Nicholas Chadwick, showed just how far Wakefield went to misrepresent and just plain lie about his data. Dr Chadwick worked at the Royal Free with Wakefield, and analysed the samples taken from the poor autistic children. (Don't forget, these samples were from gut biopsies taken under general anaesthetic, and from lumbar punctures; how the hell did Wakefield get ethical approval for that?)
At the trial, Chadwick testified as follows;
I assumed the journalist, Mr Campbell, would have done at the very least a quick Google news search that would have pointed to some of the recent articles on the issue, like Dr Michael Fitzpatrick's article,‘The MMR-autism theory? There's nothing in it.’ which tells how Dr Bustin has been prevented by the failed but drawn out UK MMR litigation, from making public his findings on the lack of measles in all the samples.
Clearly, this was all too difficult for Mr Campbell.
So on to the article.
This is rubbish. Firstly, the study is unpublished. Next, as Public Address has pointed out, it refers to a screening questionnaire called the CAST (Childhood Asperger Syndrome Test), a tool designed not to diagnose autism, but to flag up children who may turn out to be autistic. So to have screaming headlines about 1 in 58 children having autism, is just plain dumb.
I'd also take issue with the claim that this study was performed by the UK's leading autism authorities. And could journalists please stop calling people with certain conditions 'sufferers' as it really annoys them!
So here we have the MMR link. The study mentioned had absolutely nothing to do with MMR, but Mr Campbell manages to shoehorn it into the article all the same. What marvelous journalism.
The two 'experts' mentioned who privately believe that autism is linked to the MMR (but not all that privately, or we wouldn't be reading about it in a major broadsheet) were both paid large sums by the claimants in the failed UK MMR litigation. They are Dr Fiona Scott and Dr Carol Stott. Guess who Dr Stott now works for, oh yeah, Andrew Wakefield, in his Texas autism treatment shop, where he charges vulnerable and gullible parents loads of money for non-proven 'therapies'. For a fun bit of background reading on Stott, read Bad Science, where it's also revealed that Dr Scott is not happy about the leak.
Later (much later, you'd almost think it's been given less prominence on purpose) in the article we read;
The other thing that is not discussed, is how the uptake of MMR is falling, while the numbers of children diagnosed with autism continues to rise. So how is there a link?
Then we get a potted history of the MMR story, and the line, 'The medical and scientific establishment denied Wakefield's claim, described research he had co-authored as 'bad science', and sought to reassure the public, with limited success. ' Why are there quotation marks around the words bad science? It was bad science!
It all becomes clear. This is a propaganda piece, designed to make people think that there is some sort of autism MMR link, just in time for Andrew Wakefield's GMC disciplinary hearing later this month.
With any luck they will be struck off. The article also advertises a book due to be released by a GP who is cashing in on the unfounded parental fears of MMR by selling single jabs. Perhaps he's the journalist's cousin or something and he wants to give him a wee leg up.
It all ends with some good advice, tucked right in at the end;
Hear hear Dr Salisbury.
Mr Campbell writes a loving and respectful piece on Wakefield in the same paper, giving the disgraced doc loads of column inches to defend himself. It's entitled, 'I told the truth all along, says doctor at heart of autism row.'
Of course you did Andy. That's why the GMC are investigating the following allegations (quotes below from GMC documents);
The list of wrong doing continues;
I hope the originator of all this gets what he deserves.
I initially wondered what the new 'health fear' was. Had someone identified a link between autism and some illness or other? As we read, it became clear that autism was the health problem.
The article subtitle sets the agenda right away;
· Experts 'concerned' by dramatic rise
· Questions over triple jab for children
It was to be an MMR story. I was fully expecting the testimony from the USA vaccine litigation to be revealed, since it's so recent and so relevant. The expert testimony of Dr Stephen Bustin (blogged so well by Autism Diva), destroyed the credibility of those claiming to link MMR to autism, via the 'evidence' of measles virus in the tested children's guts. Dr Bustin examined the lab responsible for analysing the samples, and was able to prove that they had only ever detected false positives. There was no evidence of measles in any of the samples, whatsoever.
Also in the same trial, the evidence of Dr Nicholas Chadwick, showed just how far Wakefield went to misrepresent and just plain lie about his data. Dr Chadwick worked at the Royal Free with Wakefield, and analysed the samples taken from the poor autistic children. (Don't forget, these samples were from gut biopsies taken under general anaesthetic, and from lumbar punctures; how the hell did Wakefield get ethical approval for that?)
At the trial, Chadwick testified as follows;
Q. So you personally tested while you were in Dr. Wakefield's lab gut biopsy material, CSF and PBMCs?
A. Yes, that's right.
Q. And all the results were either negative, or if they were positive it always turned out that they were false positives?
A. Yes, that's correct.
Q. Did you inform Dr. Wakefield of the negative results?
A. Yes. Yes.
I assumed the journalist, Mr Campbell, would have done at the very least a quick Google news search that would have pointed to some of the recent articles on the issue, like Dr Michael Fitzpatrick's article,‘The MMR-autism theory? There's nothing in it.’ which tells how Dr Bustin has been prevented by the failed but drawn out UK MMR litigation, from making public his findings on the lack of measles in all the samples.
Clearly, this was all too difficult for Mr Campbell.
So on to the article.
The number of children in Britain with autism is far higher than previously thought, according to dramatic new evidence by the country's leading experts in the field.
A study, as yet unpublished, shows that as many as one in 58 children may have some form of the condition, a lifelong disability that leads to many sufferers becoming isolated because they have trouble making friends and often display obsessional behaviour.
This is rubbish. Firstly, the study is unpublished. Next, as Public Address has pointed out, it refers to a screening questionnaire called the CAST (Childhood Asperger Syndrome Test), a tool designed not to diagnose autism, but to flag up children who may turn out to be autistic. So to have screaming headlines about 1 in 58 children having autism, is just plain dumb.
I'd also take issue with the claim that this study was performed by the UK's leading autism authorities. And could journalists please stop calling people with certain conditions 'sufferers' as it really annoys them!
Seven academics at Cambridge University, six of them from its renowned Autism Research Centre, undertook the research by studying children at local primary schools. Two of the academics, leaders in their field, privately believe that the surprisingly high figure may be linked to the use of the controversial MMR vaccine. That view is rejected by the rest of the team, including its leader, the renowned autism expert, Professor Simon Baron-Cohen.
So here we have the MMR link. The study mentioned had absolutely nothing to do with MMR, but Mr Campbell manages to shoehorn it into the article all the same. What marvelous journalism.
The two 'experts' mentioned who privately believe that autism is linked to the MMR (but not all that privately, or we wouldn't be reading about it in a major broadsheet) were both paid large sums by the claimants in the failed UK MMR litigation. They are Dr Fiona Scott and Dr Carol Stott. Guess who Dr Stott now works for, oh yeah, Andrew Wakefield, in his Texas autism treatment shop, where he charges vulnerable and gullible parents loads of money for non-proven 'therapies'. For a fun bit of background reading on Stott, read Bad Science, where it's also revealed that Dr Scott is not happy about the leak.
Later (much later, you'd almost think it's been given less prominence on purpose) in the article we read;
...
Professor Baron-Cohen, director of the centre and the country's foremost authority on the condition, said he did not believe there was any link between the three-in-one vaccination and autism. Genetics, better recognition of the condition, environmental factors such as chemicals and children's exposure to hormones in the womb, especially testosterone, were more likely to be the cause, he commented. 'As for MMR, at this point one can conclude that evidence does not support the idea that the MMR causes autism.'
The other thing that is not discussed, is how the uptake of MMR is falling, while the numbers of children diagnosed with autism continues to rise. So how is there a link?
Then we get a potted history of the MMR story, and the line, 'The medical and scientific establishment denied Wakefield's claim, described research he had co-authored as 'bad science', and sought to reassure the public, with limited success. ' Why are there quotation marks around the words bad science? It was bad science!
It all becomes clear. This is a propaganda piece, designed to make people think that there is some sort of autism MMR link, just in time for Andrew Wakefield's GMC disciplinary hearing later this month.
Wakefield and two former Royal Free colleagues are due to appear before the General Medical Council next week to answer charges relating to the 1998 research. The trio could be struck off.
With any luck they will be struck off. The article also advertises a book due to be released by a GP who is cashing in on the unfounded parental fears of MMR by selling single jabs. Perhaps he's the journalist's cousin or something and he wants to give him a wee leg up.
A book to be published this month by Dr Richard Halvorsen, a London GP who provides single vaccines privately to babies of parents concerned about MMR, will fuel the controversy. It will present new evidence of children allegedly being damaged by vaccinations and linking increased autism to MMR.
It all ends with some good advice, tucked right in at the end;
But Dr David Salisbury, national director for vaccines and immunisation at the Department of Health, said last night: 'The evidence is absolutely clear. No published study has ever shown a link between autism and the MMR vaccine. It is absolute nonsense to suggest otherwise.'
Hear hear Dr Salisbury.
Mr Campbell writes a loving and respectful piece on Wakefield in the same paper, giving the disgraced doc loads of column inches to defend himself. It's entitled, 'I told the truth all along, says doctor at heart of autism row.'
Of course you did Andy. That's why the GMC are investigating the following allegations (quotes below from GMC documents);
It is alleged that the three practitioners were named as Responsible Consultants on an application made to the Ethical Practices Committee of the Royal Free Hospital NHS Trust (“the ethics committee”) in 1996 to undertake a research study involving children who suffered from gastrointestinal symptoms and a rare behavioural condition called disintegrative disorder. The title of the study was “A new paediatric syndrome: enteritis and disintegrative disorder following measles/rubella vaccination”. The Panel will inquire into allegations that the three practitioners undertook research during the period 1996-98 without proper ethical approval, failed to conduct the research in accordance with the application submitted to the ethics committee, and failed to treat the children admitted into the study in accordance with the terms of the approval given by the ethics committee. For example, it will be alleged that some of the children did not qualify for the study on the basis of their behavioural symptoms.
It is further alleged that the three practitioners permitted a programme of investigations to be carried out on a number of children as part of the research study, some of which were not clinically indicated when the Ethics Committee had been assured that they were all clinically indicated. These investigations included colonoscopies and lumbar punctures. It is alleged that the performance of these investigations was contrary to the clinical interests of the children.
The list of wrong doing continues;
The research undertaken by the three practitioners was subsequently written up in a paper published in the Lancet in February 1998 entitled “Ileal-Lymphoid-Nodular Hyperplasia, Non-Specific Colitis and Pervasive Developmental Disorder in Children” (“the Lancet paper”).
It is alleged that the three practitioners inaccurately stated in the Lancet paper that the investigations reported in it were approved by the ethics committee.
The Panel will inquire into allegations that Dr Wakefield and Professor Walker-Smith acted dishonestly and irresponsibly in failing to disclose in the Lancet paper the method by which they recruited patients for inclusion in the research which resulted in a misleading description of the patient population in the Lancet paper. It is further alleged that Dr Wakefield gave a dishonest description of the patient population to the Medical Research Council.
The Panel will inquire into allegations that Dr Wakefield and Professor Walker-Smith administered a purportedly therapeutic substance to a child for experimental reasons prior to obtaining information about the safety of the substance. It is alleged that such actions were irresponsible and contrary to the clinical interests of the child.
The Panel will inquire into allegations that Dr Wakefield was involved in advising solicitors acting for persons alleged to have suffered harm by the administration of the MMR vaccine. It is alleged that Dr Wakefield’s conduct in relation to research funds obtained from the Legal Aid Board (“LAB”) was dishonest and misleading. It will be alleged that Dr Wakefield ought to have disclosed his funding from the LAB to the Ethics Committee but did not.The Panel will inquire into allegations that Dr Wakefield ordered investigations on some children as part of the research carried out at the Royal Free Hospital from 1996-98 without the requisite paediatric qualifications to do so and in contravention of his Honorary Consultant appointment.
The Panel will inquire into allegations that Dr Wakefield failed to disclose his involvement in the MMR litigation, his receipt of funding from the LAB and his involvement in a Patent relating to a new vaccine to the Editor of the Lancet which was contrary to his duties as a senior author of the Lancet paper.
The Panel will inquire into allegations that Dr Wakefield acted unethically and abused his position of trust as a medical practitioner by taking blood from children at a birthday party to use for research purposes without ethics committee approval, in an inappropriate social setting, and whilst offering financial inducement.
Those are some serious allegations. This little ploy of redirection and resurrection of the stinky cadaver of MMR-autism causation, is not going to detract from the GMC investigation.
I hope the originator of all this gets what he deserves.
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