Lady and Thomas had a Jujitsu class, so Duncan and I went for a walk in town together. The sun was shining and we were full of joy and energy. We chatted about our plans, Duncan requested a visit to the toy shop and I consented. But we had some business to attend to first, returning a shirt to a men's clothes shop and buying some fruit and vegetables in the greengrocer's. Duncan had a story going as we went along, all about working at the harbour and quarry masters and cheeky engines who are too big for their boots. He didn't like the greengrocer shop, preferring to stand outside while I paid for my Bramley apples (we'll be having apple crumble tonight).
We like to call into the charity shops in town, and he usually spies a video he likes the look of. This time he chose a work of Canadian evil entitled Polka Dot Shorts. We carried on down the hill to the shopping centre housing his favourite toy shop. After checking out almost every Thomas & Friends item on sale, he asked to have a Take Along Whiff. The canny folk making the Thomas films have created (or resurrected) a load of new characters, just to keep our Thomas obsessed children supplied with more items to collect.
Leaving the shop we passed a woman collecting for Save the Children, I gave a few coins to Duncan to place in the box and asked if he wanted a sticker, which he did. The lady gave him the sticker, and he said "Thank you...I love you!" which made her smile, and made me laugh. My little smooth operator!
One of my favourite charity shops was across the road. I often buy books there, using it like a long lease library. We found a couple of Disney themed back packs, one with Mickey Mouse (Thomas's favourite) and one with Chicken Little, which may have been a daft film, but Duncan likes the character. I also saw a lovely photo album/project file for Lady and a Manchester United wallet for Thomas. All these will be useful for our Florida holiday.
Duncan was sitting on the floor near the door looking at some books. A car was parked right outside with its window down. A miniature schnauzer (same breed as our Pippi) in the front seat let out a loud wail of pain or complaint, which disturbed Duncan tremendously. He ran out of the shop, crying about the dog saying "Dog is safe, miniature schnauzer will not die, it will be fine!" He shouted and wailed and stomped about a bit. I assured him that the dog would be fine and safe, that it was not hurt any more. He said he wanted to go away, I had a fair idea that he didn't mean that he wanted to leave that place right away, but that he wanted the bad feeling to go, but I confirmed this by asking if he wanted me to take him back to the car straight away, but he didn't.
As this was happening, a woman around my age walked past us into the shop. She looked at Duncan then at me and made some comment which I didn't make out, but her reprobation was written clearly in her twisted face and in the the harrumph and tutting that I did hear.
Well bugger that. My boy and I were doing the best we could and I wasn't going to let some ignorant woman's mistaken superiority get the better of us. I said directly, "pardon, I didn't quite catch that." She walked on, so I followed her (my ire was up) and said again, "excuse me, did you want to tell me something?" But she ignored me and left the shop.
I probably shouldn't have said anything, but I do get fed up with the looks and whispers sometimes, even though I have a merry attitude that whingers can all take a flying leap as far as we're concerned.
Anyway, I still felt good and Duncan was fine, even though he decided that the naughty man in the car had upset the dog. We met a friend of Lady's in town, to whom Duncan proffered the top of his head for a kiss, we picked up the remaining children, went home and had bacon, lettuce and tomato sandwiches for lunch.
28 Sept 2008
26 Sept 2008
A Friend Like Henry: My thoughts
It took me a long time to read this book by Nuala Gardner. It's short and simple, but it's the opposite of compelling.
I found the writing dull, flat and pedestrian and the only person whose characterisation felt real and alive, was Nuala herself. The book consists in the main, of an account of the autistic child's birth and childhood and closely follows my how-to-write-a-parental-autism-book template.
I had hoped to find some inspiration from this story, especially since we have recently had a canine addition to the family. There is surprisingly little about the dog Henry, named after a Thomas & Friends engine, a strategy I wholly approve of.
Yes, it's nice that Dale (the autistic boy) and the dog had a good human-animal relationship, but it wasn't anything all that astonishing. It just seemed to me that when the Gardners brought Henry into Dale's life, they happened upon something that interested and engaged him. They had the great idea of giving Henry a voice, as Dale was more inclined to heed them when they spoke through Henry. They used Henry as a teaching aid, maximising all those little teaching moments as they arose, and so helping Dale to develop and learn.
There were no miracles. It's likely that even without Henry, they could have found another way to reach out to Dale and find a way to engage him and support his education.
The story proceeds to describe all the struggles Nuala faced, first to understand just why her son was so different, and then to have her worries for him taken seriously. There's a lovely account of how her mother helped Dale learn to say his first word-tree-by patting a tree and labelling it with a single word. She then encouraged him to finish the sentence "it's a ..." giving him time and space to say the word, and he did. This is hailed as a miracle, which I suppose is fair enough when your child's first word comes at 26 months.
(Duncan's first word-train, emerged when he was nearly 3 years old. We played lots of ending the sentence games, a favourite was to sing the Winnie the Pooh song, letting him sing the very last word -bear, which he loved to do.)
I felt for Nuala when she described an incident at a playgroup when Dale didn't want to give up a plastic spoon when they were tidying up the toys, leading to a tantrum and condemnation from the other mums. I remember such things myself.
The moment a professional gave voice to the word "that petrified" her, autism, she says that "something inside me died," but her mum, an eminently sensible person from the sound of things, reminds her that "he's still our Dale, and we'll do whatever it takes to help him."
Unfortunately, Nuala struggles with this and describes how she cried and wished she "could find a way out of this hell...wishing I was dead. I loved Dale so much, but while I respected his disability, I hated his autism," a sentiment that makes no sense to me. Shockingly, to her, he laughed as she cried because, apparently, of his "lack of empathy and low comprehension of emotions."
Just as in part 8 of my template, Nuala explains how awful things were, "despite all our efforts to break into his world, autism was now engulfing him-and I was losing him to it."
I wonder, do parents of children with other disabilities ever speak about their children in that way?
For a book ostensibly starring Henry, we don't hear much of him until quarter of the way through the story and he's barely mentioned in the second half. As a pup, he approaches Dale, Dale strokes him and so the bond begins. Whereas Dale (like Duncan) learned lots via Thomas & Friends, Henry is a living companion, so there's lots of talk and play which both enjoy.
But bad things are a-stirring, and we enter the chapter corresponding to point 9 on my template. Dale kicks the dog one day, and everyone is shocked, and it's a turning point because Dale is desperately sorry for what he did, apologises to the dog and is devastated when his mum pretends that she's calling the breeder to return Henry. But most amazingly, the child who was said to lack empathy, tells his dog that he loves him, and, stop the press, tells his parents he loves them too. Wow, they can do that?
(Just so people know, Duncan's been telling us that he loves us for years, without any of these miraculous interventions.)
Time passes and things happen and we're told about almost all of them in this book. There's a huge cast of characters and schools mentioned and I was losing track of who was who before long. There's a lot less about Henry than I expected, and more about their struggles to have a second child and various family traumas. Much emphasis is given to their efforts to have Dale attend mainstream school as he was "regressing, in that he was picking up autistic mannerisms and copying inappropriate behaviour from the other children" who were also autistic. We couldn't have those awful children contaminate him now, could we.
The Gardners were not fully immune to the autism-biomed quack theories and Nuala tells of a conference with the Grandaddy of autism-vaccine nonsense himself, Andrew Wakefield. She knows that his notion of a link between MMR and autism is bunk as Dale was clearly affected from birth but she believes in his invented disease of autistic-colitis. Later, she spoke with the star attraction who recommended that they get Dale checked out, which led to an appointment at a private hospital for some unnamed medications which soon resolved his unmentioned problems.
Moreover, by now Nuala has a second child, who is not exposed to the MMR, as they "took the informed decision to give her single vaccines at six-month intervals (my emphasis)."
The Gardeners did their best to help Dale learn and progress academically and socially, enrolling him in drama classes and extra maths lessons. Dale was eventually able to attend mainstream secondary school, where he "passed" (my word) as non-autistic. He didn't even know he was autistic until he was around 12, when he is said to have asked his mum why he was struggling so much with his school work, "Why did I get born with problems? Do these problems have a name?" They had hidden the truth about his neurological condition from him for so long, it was a terrible shock to him when he was finally told the truth.
It can't have helped that his mum was even then depicting autism as some sort of troublesome add-on. She told him "if you didn't have such a strong desire to be like everyone else, you'd never be where you are now."
Way to go at bolstering his self esteem there. Let the boy know that the aim is to pass, to hide the autism.
Dale was concerned that his sister "had it" and Nuala assured him she was "all right and doing well." But no, it turned out that her "worse nightmare unfolded as I watched Amy [Dale's sister] slowly slipping away from me."
What is it with these changeling metaphors and autism-parent authors?
But never fear, for Henry is brought back into the story at last to save Amy as well as Dale, and when he's old and ill, Nuala's thoughts were, "How do you let go and say good-bye to someone who has helped give you back your children?"
It's clear that Henry was a wonderful pet, gentle, loyal and well trained, but it's an exaggeration to say that he gave her back her children, who after all, hadn't gone anywhere, but just had some growing up to do.
I found the writing dull, flat and pedestrian and the only person whose characterisation felt real and alive, was Nuala herself. The book consists in the main, of an account of the autistic child's birth and childhood and closely follows my how-to-write-a-parental-autism-book template.
I had hoped to find some inspiration from this story, especially since we have recently had a canine addition to the family. There is surprisingly little about the dog Henry, named after a Thomas & Friends engine, a strategy I wholly approve of.
Yes, it's nice that Dale (the autistic boy) and the dog had a good human-animal relationship, but it wasn't anything all that astonishing. It just seemed to me that when the Gardners brought Henry into Dale's life, they happened upon something that interested and engaged him. They had the great idea of giving Henry a voice, as Dale was more inclined to heed them when they spoke through Henry. They used Henry as a teaching aid, maximising all those little teaching moments as they arose, and so helping Dale to develop and learn.
There were no miracles. It's likely that even without Henry, they could have found another way to reach out to Dale and find a way to engage him and support his education.
The story proceeds to describe all the struggles Nuala faced, first to understand just why her son was so different, and then to have her worries for him taken seriously. There's a lovely account of how her mother helped Dale learn to say his first word-tree-by patting a tree and labelling it with a single word. She then encouraged him to finish the sentence "it's a ..." giving him time and space to say the word, and he did. This is hailed as a miracle, which I suppose is fair enough when your child's first word comes at 26 months.
(Duncan's first word-train, emerged when he was nearly 3 years old. We played lots of ending the sentence games, a favourite was to sing the Winnie the Pooh song, letting him sing the very last word -bear, which he loved to do.)
I felt for Nuala when she described an incident at a playgroup when Dale didn't want to give up a plastic spoon when they were tidying up the toys, leading to a tantrum and condemnation from the other mums. I remember such things myself.
The moment a professional gave voice to the word "that petrified" her, autism, she says that "something inside me died," but her mum, an eminently sensible person from the sound of things, reminds her that "he's still our Dale, and we'll do whatever it takes to help him."
Unfortunately, Nuala struggles with this and describes how she cried and wished she "could find a way out of this hell...wishing I was dead. I loved Dale so much, but while I respected his disability, I hated his autism," a sentiment that makes no sense to me. Shockingly, to her, he laughed as she cried because, apparently, of his "lack of empathy and low comprehension of emotions."
Just as in part 8 of my template, Nuala explains how awful things were, "despite all our efforts to break into his world, autism was now engulfing him-and I was losing him to it."
I wonder, do parents of children with other disabilities ever speak about their children in that way?
For a book ostensibly starring Henry, we don't hear much of him until quarter of the way through the story and he's barely mentioned in the second half. As a pup, he approaches Dale, Dale strokes him and so the bond begins. Whereas Dale (like Duncan) learned lots via Thomas & Friends, Henry is a living companion, so there's lots of talk and play which both enjoy.
But bad things are a-stirring, and we enter the chapter corresponding to point 9 on my template. Dale kicks the dog one day, and everyone is shocked, and it's a turning point because Dale is desperately sorry for what he did, apologises to the dog and is devastated when his mum pretends that she's calling the breeder to return Henry. But most amazingly, the child who was said to lack empathy, tells his dog that he loves him, and, stop the press, tells his parents he loves them too. Wow, they can do that?
(Just so people know, Duncan's been telling us that he loves us for years, without any of these miraculous interventions.)
Time passes and things happen and we're told about almost all of them in this book. There's a huge cast of characters and schools mentioned and I was losing track of who was who before long. There's a lot less about Henry than I expected, and more about their struggles to have a second child and various family traumas. Much emphasis is given to their efforts to have Dale attend mainstream school as he was "regressing, in that he was picking up autistic mannerisms and copying inappropriate behaviour from the other children" who were also autistic. We couldn't have those awful children contaminate him now, could we.
The Gardners were not fully immune to the autism-biomed quack theories and Nuala tells of a conference with the Grandaddy of autism-vaccine nonsense himself, Andrew Wakefield. She knows that his notion of a link between MMR and autism is bunk as Dale was clearly affected from birth but she believes in his invented disease of autistic-colitis. Later, she spoke with the star attraction who recommended that they get Dale checked out, which led to an appointment at a private hospital for some unnamed medications which soon resolved his unmentioned problems.
Moreover, by now Nuala has a second child, who is not exposed to the MMR, as they "took the informed decision to give her single vaccines at six-month intervals (my emphasis)."
The Gardeners did their best to help Dale learn and progress academically and socially, enrolling him in drama classes and extra maths lessons. Dale was eventually able to attend mainstream secondary school, where he "passed" (my word) as non-autistic. He didn't even know he was autistic until he was around 12, when he is said to have asked his mum why he was struggling so much with his school work, "Why did I get born with problems? Do these problems have a name?" They had hidden the truth about his neurological condition from him for so long, it was a terrible shock to him when he was finally told the truth.
It can't have helped that his mum was even then depicting autism as some sort of troublesome add-on. She told him "if you didn't have such a strong desire to be like everyone else, you'd never be where you are now."
Way to go at bolstering his self esteem there. Let the boy know that the aim is to pass, to hide the autism.
Dale was concerned that his sister "had it" and Nuala assured him she was "all right and doing well." But no, it turned out that her "worse nightmare unfolded as I watched Amy [Dale's sister] slowly slipping away from me."
What is it with these changeling metaphors and autism-parent authors?
But never fear, for Henry is brought back into the story at last to save Amy as well as Dale, and when he's old and ill, Nuala's thoughts were, "How do you let go and say good-bye to someone who has helped give you back your children?"
It's clear that Henry was a wonderful pet, gentle, loyal and well trained, but it's an exaggeration to say that he gave her back her children, who after all, hadn't gone anywhere, but just had some growing up to do.
23 Sept 2008
Tyrone GAA win
Photo by Margaret McLaughlin and pilfered from the Irish News showing the Tinnies statues in their Tyrone gear.Pubs and houses in my home town were packed with cheering fans, the atmosphere was marvellous and everyone was having a great time celebrating the victory. Across the land, people north and south from 31 counties were cheering on the Red Hands, well, maybe not the Dubs.
Even my sister in London enjoyed the match from a pub jammed with other Irish folk, sports fans and people just soaking the atmosphere.
While all this was taking place, I was with Gordon at a nice and sedate wedding in Cambridge, England where talk of Gaelic games was not on the agenda. Gordon's best friend from his school days was the groom and Gordon was honoured to be his Best Man. It was a beautiful wedding, and I had a lovely day. My sister was kind enough to text me updates on the match and I was unable to withhold a small cry of joy when the final result came in while we were having dinner.
At least it wasn't during the ceremony.
Our friend is a super smart mathematician, runner and musician, and it turns out, a great speech giver. He assured me that his talents didn't stretch to dancing; he wasn't wrong.
While I was enjoying a sedate and short recital of chamber music, my siblings no doubt were engaged in a baser and bawdier type of entertainment. There was a great band at the wedding too so I did enjoy a chance to dance a bit myself.
I'm glad I was able to go to the wedding, it was far more important to be there than bounding about with a gang clad in red and white, but I wish they'd taken place on separate days.
How to write a book about your autistic child
There have been many books written by the parents of autistic children. I admit that I have read few of these parental accounts, knowing from the reviews and book descriptions that they would bore or irritate me, perhaps even anger me. I have enough to be angry about already. So I know less than many about how Clara Claiborne Park would would "use every stratagem we could invent to assail her [autistic daughter's] fortress, to beguile, entice, seduce her into the human condition" as described in her book, The Siege. I never got to read how Catherine Maurice's "two children were rescued from the tragedy of autism" (as described by the Amazon UK blurb) or grasp the irony of a woman writing of her anger with "professionals who ... prey on desperate parents by offering false hopes and anecdotal accounts of miracles" in her own version of just that, Let Me Hear Your Voice. And I certainly wasn't going to waste my time with Jenny McCartney's woeful Louder Than Words.
I have endured a novelised version of the parental autism story as described in gory detail here and I think I know enough about the genre to see that they all follow a particular template:
I have endured a novelised version of the parental autism story as described in gory detail here and I think I know enough about the genre to see that they all follow a particular template:
- Baby is born
- Everyone rejoices
- Baby grows
- Mum realises baby is somehow different, something is not quite right, or,
- Baby develops entirely typically but is vaccinated after which Mum realises baby is somehow different, something is not quite right.
- Mum struggles to get anyone to take her concerns seriously. Her husband might think she's worrying about nothing and that no child of his could possibly be anything less than perfect. All the doctors she encounters are callous and all the other professionals are harsh and unhelpful. Eventually one special therapist or teacher (but not a medic) comes along who understands and for the first time, really listens.
- After much effort and heartache, Mum and Dad are devastated to learn that the explanation for all the child's problems is this terrible curse known as Autism.
- Just so we know how hard their lives are, how terrible this Autism thing is, several examples of the child's terrible behaviour are described, the tantrums and self-harm, the strange humming and abnormal interest in trains. This makes the book "gritty" and "unflinching" in the newspaper book reviews and is generally thought of as a good thing.
- The best way to garner sympathy and to dehumanise the afflicted child entirely is to describe in vivid detail, some time when the child hurt a member of the family. Mum must never write about any time when she (or any other adult with power over the child) lost her temper or lashed out at the child.
- The warrior phase commences. Mum finds out stuff the doctors don't know, or didn't want her to know. She arms herself with superior knowledge, garnered from a motley crew of brave mavericks or comes up with some self directed plan, and goes medieval on the autism.
- Mum is a lone crusader, challenging authority and staying strong and calm in the face of what to ordinary mortals would be insurmountable obstacles. But Mum reveals in her book, the real terror she felt, the depression and anxiety, the tears and sleepless nights, all due to the autism which has seized her child and holds him or her hostage.
- The intervention phase commences. The child gets older and matures, hopefully with lots of love and good education as well. But the intervention is credited with effecting a miraculous cure.
- The story ends by recalling just how far they have all come and how it would never have been possible without x, y or z (ABA, the companionship of a Golden Retriever or certain biomedical treatments). The child is said to be normal or recovered, as measured by a place in the Valhalla of this type of autism parent - mainstream school.
THE END.
I wrote a short version of this myself in my tale of the magic ketchup.
Does anyone know of any other books that fit the template?
I wrote a short version of this myself in my tale of the magic ketchup.
Does anyone know of any other books that fit the template?
Autism book: A Friend Like Henry
I was asked during the summer if I wanted a review copy of an "inspiring, true story of an autistic little boy, Dale Gardner, who conquered his autism with the help of the family’s golden retriever puppy named Henry."
The attached press release for the book didn't inspire much hope, with lines like these:
But more than anything, my inherent thriftiness didn't allow for the turning down of a free book. So I asked them to send it, telling myself I'd keep an open mind and hoping to be pleasantly surprised.
I'd say anyone who has read more than 3 posts here might guess what happened.
The attached press release for the book didn't inspire much hope, with lines like these:
While most people associate dogs as family pets and even helpers for those who are physically disabled, not many people think of these gentle beasts as great therapy for a disease as complex as autism. I’m happy to share with you the remarkable true story of a dog who brought a boy out of the shadows of autism and helped him conquer this debilitating condition (my emphasis).The people writing to me had obviously never read any of my blog (shocking, I know) or they might have known that I'm not going to be too enamoured by that type of depiction of autism. But perhaps the publishers were responsible for giving the book a certain spin, trying to cash in on the growing market for autism recovery tales, in which autism must be presented as nothing less than demonic possession and natural maturation as a miracle. Perhaps the book itself was a much more open, honest and thoughtful depiction of the development of an autistic child and his family's efforts to support him. I was interested too to read about Henry since we had recently bought a dog.
But more than anything, my inherent thriftiness didn't allow for the turning down of a free book. So I asked them to send it, telling myself I'd keep an open mind and hoping to be pleasantly surprised.
I'd say anyone who has read more than 3 posts here might guess what happened.
22 Sept 2008
Westward bound
I decided to check out the prices of a(nother) family trip to Disneyland Paris this autumn/winter. It was do-able, so I set to convincing Gordon of the benefits of a few more days of rodent-based corporate jollity, emphasising lower prices and crowd levels and claiming that we're tough enough to withstand the cold and inevitable rain when suitably attired.
Gordon agreed that it would be great to go away, but he craves sunshine and suggested we look into getting our fill of Disney somewhere rather hotter and drier than Paris in November. So we checked out the possibility of going all the way to the USA. We have also collected a whole heap of supermarket/credit card vouchers than can be used to offset the cost when booking via Virgin Holidays, so we pondered and looked at the climate data for that part of the world and made our decision. All five of us are heading to Orlando this November.
I ordered the vouchers and checked out all the board options, opting to rent an apartment near Disney World, so we have enough space and flexibility to meet our family's needs. Waiting for the vouchers, I was concerned to see some prices rise as tourists let down by the collapse of travel company XL, rushed to rebook. Thankfully there were a few seats left on our preferred travel dates and at the original price, so it's all booked now.
I just realised I need a new passport if I'm to get into the US under its visa waiver programme, but the rest of the family are OK. As well as all that official stuff, we've been investigating the various attractions of the area and trying to figure out some sort of an itinerary, knowing well that plenty of REST must feature prominently. There'll be much more planning over the coming weeks. This is the kind of project the kids and I enjoy best, home-education of the finest variety.
I feel a bit anxious. This will involve a lot of travelling, changing aeroplanes in London, lining for security checks and checking in as well as a flight time of over 9 hours. I've already spoken to a travel advisor at Virgin Atlantic, and she explained some of the very helpful accommodations the airline make for their autistic customers.
You know, I think we can do this.
Gordon agreed that it would be great to go away, but he craves sunshine and suggested we look into getting our fill of Disney somewhere rather hotter and drier than Paris in November. So we checked out the possibility of going all the way to the USA. We have also collected a whole heap of supermarket/credit card vouchers than can be used to offset the cost when booking via Virgin Holidays, so we pondered and looked at the climate data for that part of the world and made our decision. All five of us are heading to Orlando this November.
I ordered the vouchers and checked out all the board options, opting to rent an apartment near Disney World, so we have enough space and flexibility to meet our family's needs. Waiting for the vouchers, I was concerned to see some prices rise as tourists let down by the collapse of travel company XL, rushed to rebook. Thankfully there were a few seats left on our preferred travel dates and at the original price, so it's all booked now.
I just realised I need a new passport if I'm to get into the US under its visa waiver programme, but the rest of the family are OK. As well as all that official stuff, we've been investigating the various attractions of the area and trying to figure out some sort of an itinerary, knowing well that plenty of REST must feature prominently. There'll be much more planning over the coming weeks. This is the kind of project the kids and I enjoy best, home-education of the finest variety.
I feel a bit anxious. This will involve a lot of travelling, changing aeroplanes in London, lining for security checks and checking in as well as a flight time of over 9 hours. I've already spoken to a travel advisor at Virgin Atlantic, and she explained some of the very helpful accommodations the airline make for their autistic customers.
You know, I think we can do this.
11 Sept 2008
Duncan tells us how it is
Duncan made a few more pictures so I put them into a film. I thought it might be nice to have him talk about them, so I asked him if he wanted to tell me about his pictures. He was ever so happy to comply, and I recorded his thoughts on my MP3 player.
He loves the end result. He likes watching the other films we made of his own pictures but this one is his new favourite.
He loves the end result. He likes watching the other films we made of his own pictures but this one is his new favourite.
9 Sept 2008
"Let's go!" said Duncan
Duncan lives much of his life as if he's starring in a film. He has an ongoing script that he mutters to himself as he goes along. When he's riding his bike he's really Percy the cheeky steam engine and he crashes into buffers or goes too fast and comes off the tracks. As well as the Thomas Tank stories, an assortment of other characters and scenarios are played out.
Recently he's taken this a step further. In the past few days when he answers me or tells me something, or just is scripting one of his myriad adventures, he puts his own words in quotes. As we walk into the shop together he says, "'Let's go!' said Duncan."
When I don't get him a book he wants, it's, "'You're a nasty woman,' grumbled Duncan."
When he can't get a new Trainz engine downloaded he says, "'Oh dear, it's all wrong' cried Duncan."
At bedtime, when I ask him to turn the computer off and come to brush his teeth, "'I don't want to go to bed,' moaned Duncan."
Recently he's taken this a step further. In the past few days when he answers me or tells me something, or just is scripting one of his myriad adventures, he puts his own words in quotes. As we walk into the shop together he says, "'Let's go!' said Duncan."
When I don't get him a book he wants, it's, "'You're a nasty woman,' grumbled Duncan."
When he can't get a new Trainz engine downloaded he says, "'Oh dear, it's all wrong' cried Duncan."
At bedtime, when I ask him to turn the computer off and come to brush his teeth, "'I don't want to go to bed,' moaned Duncan."
Thomas & Friends Down the Mine
This post and its title, were dictated to me by Duncan:
This new programme was especially made for video in "James and Duck and Thomas's ABC," the tank engines teach young children using rhymes and songs to understand and enjoy learning!
So now you know!
This new programme was especially made for video in "James and Duck and Thomas's ABC," the tank engines teach young children using rhymes and songs to understand and enjoy learning!
So now you know!
7 Sept 2008
Autism: It's just life
Every so often, real life intervenes and blogging is the last thing I feel like doing. My head is too full of thoughts that are beyond the boundaries of what I share here.
Also, I find it easier at times, to write when I have something to complain about. I suppose it's easier to declaim than to extol. I know I write positively about my children and make a point of focusing on the positives of raising a disabled child. As well as being my reality, I think it's important to redress the all too common narrative of "devastation." I'm pleased that even now when I'm almost full of worry, my post about Good Stuff had 9 more entries than my list of Not Good Stuff.
But here's another example of that narrative. Published in Saturday's Daily Telegraph is a story called Autism: A different life featuring the people behind a magazine pushing the unproven biomedical theory of autism and stuffed full of advertisements and articles on supplements, extra enzymes, detoxification and a host of other dodgy quackery.
I was introduced to Polly Tommey by my health visitor when Duncan was diagnosed with autism six years ago. I met her and spent a long afternoon listening to her theories and her detailed regime to rid her son of his autism. Back then I was impressed at her zeal and ostensible knowledge of autism's causes and treatments. Her son had had intensive ABA teaching. He had a host of supplements daily. He was fed only organic food and water from glass bottles, lest any pesky toxins intrude.
She talked about his numerous infections and how she believed the many courses of antibiotics he'd taken as a baby, together with vaccinations, were connected to his autism. She asked if Duncan had taken antibiotics and yes, he'd had two courses. She asked if he looked frail and had dark rings below his eyes. Yes, he looked frail as he ate very little and was well below the average weight for a child his age. I remember that I also said that he did have dark rings, even though I hadn't noticed such a trait, because I was caught up in her pitch and wanted to think that she knew how to help me help him. She warned me against joining the local NAS group where they refused to believe in cures and whose acceptance she interpreted as negativity.
She was a very kind lady. She welcomed me into her home and really did want to share what she knew in an effort to help. She presented me with a glut of her magazines which I read religiously for the next week or so. I tried to get Gordon to take an interest in it all. I showed him the article by the nutropath, advocating various vitamins and minerals. I showed him the articles about the labs which tested autistic children's hair, blood and stools and found all sorts of non standard levels. He scoffed at the lot of it. He just knew too much about microbiology, statistics, pharmacology etc. to be taken in by any of it. He pointed out a pile of what were (to him) ridiculous assertions contained in the magazines, and since he really knows his stuff, I dumped the lot of them. I considered it safer than taking the risk of passing them on to another unsuspecting parent, one without the benefit of an in-house quack-buster.
But times have changed since then. What could be attributable to ignorance back in 2002, is less excusable today. The science has moved on. Numerous studies have failed to find a link between vaccination and autism, while as many have found more evidence for the genetic basis of the condition. Those who cling to environmental explanations in the face of the evidence are coming from a faith based position.
The Telegraph article describes the efforts Polly and her husband Jonathon made to treat their son Billy:
Young Billy was also the first child in the UK to be given secretin, ye olde wonder treatmente. It was a nineties thing and was later studied properly and found to have no effect.
But the Tommey parents are unfazed:
The Tommey's magazine is popular and is about to go on sale in Sainsbury's and Tesco. It's also said to sell well in the USA, no surprises there.
The article continues:
The "apparent" growth in autism is discussed, with increasing awareness and diagnostic substitution mentioned as possible explanations, but the Tommey's have their own ideas:
I also think the needs of our children and all autistic people can be met without resorting to using the terrible cases of Ryan Davies and James Wardle as examples of what happens without support. Ryan Davies was murdered and though what exactly happened to James has not been made known yet, it's likely that he died unlawfully too. These deaths can't be excused by saying that their parents were driven to despair.
The article ends by describing the Tommey's latest venture, the Autism Trust, a multi-million pound project to build a village for 50 autistic residents. They foresee the local authorities paying £80,000 per year to care for each resident. On looking through its website, I don't think it demonstrates the best use of resources. There's the Wellness Centre "where in–house experts including nutritionists and therapists will practise alongside behavioural, educational and developmental experts" and "vocational opportunities...ranging from organic and eco-friendly agricultural and horticultural work through to technology and design enabled work stations within the office and administration area."
We'll find another way thanks.
Also, I find it easier at times, to write when I have something to complain about. I suppose it's easier to declaim than to extol. I know I write positively about my children and make a point of focusing on the positives of raising a disabled child. As well as being my reality, I think it's important to redress the all too common narrative of "devastation." I'm pleased that even now when I'm almost full of worry, my post about Good Stuff had 9 more entries than my list of Not Good Stuff.
But here's another example of that narrative. Published in Saturday's Daily Telegraph is a story called Autism: A different life featuring the people behind a magazine pushing the unproven biomedical theory of autism and stuffed full of advertisements and articles on supplements, extra enzymes, detoxification and a host of other dodgy quackery.
I was introduced to Polly Tommey by my health visitor when Duncan was diagnosed with autism six years ago. I met her and spent a long afternoon listening to her theories and her detailed regime to rid her son of his autism. Back then I was impressed at her zeal and ostensible knowledge of autism's causes and treatments. Her son had had intensive ABA teaching. He had a host of supplements daily. He was fed only organic food and water from glass bottles, lest any pesky toxins intrude.
She talked about his numerous infections and how she believed the many courses of antibiotics he'd taken as a baby, together with vaccinations, were connected to his autism. She asked if Duncan had taken antibiotics and yes, he'd had two courses. She asked if he looked frail and had dark rings below his eyes. Yes, he looked frail as he ate very little and was well below the average weight for a child his age. I remember that I also said that he did have dark rings, even though I hadn't noticed such a trait, because I was caught up in her pitch and wanted to think that she knew how to help me help him. She warned me against joining the local NAS group where they refused to believe in cures and whose acceptance she interpreted as negativity.
She was a very kind lady. She welcomed me into her home and really did want to share what she knew in an effort to help. She presented me with a glut of her magazines which I read religiously for the next week or so. I tried to get Gordon to take an interest in it all. I showed him the article by the nutropath, advocating various vitamins and minerals. I showed him the articles about the labs which tested autistic children's hair, blood and stools and found all sorts of non standard levels. He scoffed at the lot of it. He just knew too much about microbiology, statistics, pharmacology etc. to be taken in by any of it. He pointed out a pile of what were (to him) ridiculous assertions contained in the magazines, and since he really knows his stuff, I dumped the lot of them. I considered it safer than taking the risk of passing them on to another unsuspecting parent, one without the benefit of an in-house quack-buster.
But times have changed since then. What could be attributable to ignorance back in 2002, is less excusable today. The science has moved on. Numerous studies have failed to find a link between vaccination and autism, while as many have found more evidence for the genetic basis of the condition. Those who cling to environmental explanations in the face of the evidence are coming from a faith based position.
The Telegraph article describes the efforts Polly and her husband Jonathon made to treat their son Billy:
Jonathan's response was to do everything he could to improve his son's health by testing and treating the biomedical disorders that contributed to his condition. He put him on a gluten- and casein-free diet, treated various funguses, viruses and bacteria in his leaking gut, and gave him zinc supplements to increase his appetite.None of these therapies have any basis in evidence. Her son now sounds much like Duncan who has not had any behavioural or biomedical therapy.
Young Billy was also the first child in the UK to be given secretin, ye olde wonder treatmente. It was a nineties thing and was later studied properly and found to have no effect.
But the Tommey parents are unfazed:
Nine years on, Jonathan Tommey has completed training as a clinical nutritionist and, last year, he set up the Autism Clinic where he has tested and treated 500 children. Some of them have done so well that he now calls regressive autism - autism that is not evident at birth but begins during childhood - 'a biomedical disorder with a psychological diagnosis'. 'Some children,' he says, 'have improved so much that you could call them recovered.'Well you could call them recovered, or you could call them older, more developed. Or has Mr Tommey, like Leo Kanner and Hans Asperger, really discovered a new condition?
The Tommey's magazine is popular and is about to go on sale in Sainsbury's and Tesco. It's also said to sell well in the USA, no surprises there.
The article continues:
'It's important to be international,' Polly says. 'It's only by putting our heads together that we will find answers to the questions I want answered.' These include: why are so many children becoming autistic? Why are parents having such a struggle? Where will all these children go? And why are parents committing suicide with their children?Apart from that last, it's a set of reasonable queries. But by "parents committing suicide with their children" do they mean parents who murder their children and kill themselves?
The "apparent" growth in autism is discussed, with increasing awareness and diagnostic substitution mentioned as possible explanations, but the Tommey's have their own ideas:
...the Tommeys believe there are more than ever before; the survival of premature babies and an increase in births to older mothers may be partly responsible. Environmental factors may also explain the rise.Ooh, a timebomb! Look out world. Forget about climate change, global poverty, war and fuel shortages, worry about scary autistic children growing up.
These might include vaccines (including MMR, as suggested by the gastroenterologist Andrew Wakefield), pollution, antibiotics and other challenges to immature immune systems. 'Whatever the cause,' Polly says, 'with all these children growing into adulthood, we are sitting on a timebomb.'
Battling with local authorities for schools and respite care is wearing for parents with autistic children, but fearing for the future is worse. The day will come, they know, when they will no longer have even a quiet few hours while their child is at school. And what will happen when they die? 'People with autism have a normal life expectancy,' Polly says, 'though a fair few die young in accidents: they run across roads, unaware of danger.I too worry about my son's future but see the best way of supporting him as putting pressure on those in power to change work places to make them more autistic friendly and to arrange workable living support systems. I do not think it's worth mentioning that autistic people have normal life expectancy. If we parents of autistic children all focused our energies on enabling them to live as independently as possible as adults, and ensuring they have a good early education together with opportunities for life-long learning, then our time would be well spent. It has got to beat harping on about the MMR, secretin, chelation and dodgy American mail order labs.
I also think the needs of our children and all autistic people can be met without resorting to using the terrible cases of Ryan Davies and James Wardle as examples of what happens without support. Ryan Davies was murdered and though what exactly happened to James has not been made known yet, it's likely that he died unlawfully too. These deaths can't be excused by saying that their parents were driven to despair.
Some parents find the prospect of a lifetime of such misery so unbearable that they take their own and their children's lives. Two years ago Alison Davies took the heartbreaking step of jumping off the Humber bridge holding her 12-year-old son Ryan, and the discovery this April of the bodies of Heather Wardle and her 22-year-old autistic son James once again drew attention to their plight. But there remains no systematic planning for the estimated 135,000 children with autism in this country, three quarters of whom are boys.Polly talks about her own son:
'But I don't want Billy hidden away and institutionalised. It's such a waste. I want him to feel useful - and to be able to give something back to society. Often children who appear very severely impaired, and are completely non-verbal, have wonderful abilities that shouldn't be wasted. I know one little girl who is brilliant at weaving, another who does wonderful graphics. Some are good at circus skills because they have no fear; others are very good at maths. They would all be much happier if they could be productive.'People have innate worth, even when they don't seem to have any useful skills, but it's very important to help people enjoy life and develop their skills and interests.
The article ends by describing the Tommey's latest venture, the Autism Trust, a multi-million pound project to build a village for 50 autistic residents. They foresee the local authorities paying £80,000 per year to care for each resident. On looking through its website, I don't think it demonstrates the best use of resources. There's the Wellness Centre "where in–house experts including nutritionists and therapists will practise alongside behavioural, educational and developmental experts" and "vocational opportunities...ranging from organic and eco-friendly agricultural and horticultural work through to technology and design enabled work stations within the office and administration area."
We'll find another way thanks.
Creative Camp Belfast
Yesterday, I had the chance to go off for a few hours to Creative Camp in Belfast, an event billed as bringing together "technology and creative enthusiasts who want to make things happen with web, mobile, open source, new media, music and design."
I was unsure whether to attend, not knowing if my web endeavours really fit that description. But I decided that with this blog, I aim to make things happen, specifically by challenging assumptions, in a very small way for a few people. But mainly, I felt it would be good to get out and hopefully meet a few folk whose online identities I could fit to a real world face.
I enjoyed the talks I heard, and the atmosphere of untapped possibilities. One man discussed soluble dresses. Strange topic that! He was an artist involved in a project hoping to highlight the problems of our throw away culture. It's very worthy, but he showed a film of dissolving dresses making pretty colours in (now toxin laden) water tanks and it dragged on for rather too long. He made me laugh when he said that working on the project had alerted him to the dangers of plastics, and we shouldn't give babies milk in plastic bottles as it can harm them some way, by "damaging their DNA or something." I shouldn't scoff, but hey ho.
For another talk, a man described with near evangelical glee, a system of project organisation called Getting Things Done. And yes, it does require capitalisation. I could do with following some of his tips.
I came in half way through a talk on creativity in the work place. As some people mentioned the importance of team work, socialising as a way of getting to know your colleagues and getting the proper balance of control and flexibility, I thought about those workers who have lots to offer employers but who prefer not to socialise down the pub or who can work with a team but like to do their part in a project alone and communicate via email. Basically, I thought about autistic and disabled workers and how they can be accommodated. I never spoke up though, I'd come in late and was a bit too shy. Perhaps at another one of these I'll think it through properly, get some advise and give a talk.
The event was well organised, and it was great to meet people from the local region involved in all sorts of clever and creative activities. I enjoyed chatting with Grannymar and Alan, both of whose blogs I read regularly. I met Phil, another regular read and Damien, blogging maestro and the guy who runs the Irish Blog Awards and the new Irish Web Awards.
The whole thing, including a decent lunch, was free. When I explained to one of the organisers, a woman called Mairin, that I was "just" a blogger, she demonstrated the spirit of Creative Camp by deciding to have a panel discussion about blogging with Grannymar and myself, whom I suspect were the only people there not to be in paid employment. It was cool. I mentioned why I started to blog and what I get out of it, and enjoyed hearing others discuss their own views. One guy was a bit waffly and too keen to share, but there's always one of those.
I left after that as Gordon's mum was minding the children for part of the day. I missed the first train home so dandered around a book shop for a while, picking up a book I've been meaning to buy for a while now. Borderlands is a detective novel set in my home town and surrounding areas. I started to read in the shop and almost missed the train again.
Sometimes it's nice to be reminded that I have a life beyond these walls.
I was unsure whether to attend, not knowing if my web endeavours really fit that description. But I decided that with this blog, I aim to make things happen, specifically by challenging assumptions, in a very small way for a few people. But mainly, I felt it would be good to get out and hopefully meet a few folk whose online identities I could fit to a real world face.
I enjoyed the talks I heard, and the atmosphere of untapped possibilities. One man discussed soluble dresses. Strange topic that! He was an artist involved in a project hoping to highlight the problems of our throw away culture. It's very worthy, but he showed a film of dissolving dresses making pretty colours in (now toxin laden) water tanks and it dragged on for rather too long. He made me laugh when he said that working on the project had alerted him to the dangers of plastics, and we shouldn't give babies milk in plastic bottles as it can harm them some way, by "damaging their DNA or something." I shouldn't scoff, but hey ho.
For another talk, a man described with near evangelical glee, a system of project organisation called Getting Things Done. And yes, it does require capitalisation. I could do with following some of his tips.
I came in half way through a talk on creativity in the work place. As some people mentioned the importance of team work, socialising as a way of getting to know your colleagues and getting the proper balance of control and flexibility, I thought about those workers who have lots to offer employers but who prefer not to socialise down the pub or who can work with a team but like to do their part in a project alone and communicate via email. Basically, I thought about autistic and disabled workers and how they can be accommodated. I never spoke up though, I'd come in late and was a bit too shy. Perhaps at another one of these I'll think it through properly, get some advise and give a talk.
The event was well organised, and it was great to meet people from the local region involved in all sorts of clever and creative activities. I enjoyed chatting with Grannymar and Alan, both of whose blogs I read regularly. I met Phil, another regular read and Damien, blogging maestro and the guy who runs the Irish Blog Awards and the new Irish Web Awards.
The whole thing, including a decent lunch, was free. When I explained to one of the organisers, a woman called Mairin, that I was "just" a blogger, she demonstrated the spirit of Creative Camp by deciding to have a panel discussion about blogging with Grannymar and myself, whom I suspect were the only people there not to be in paid employment. It was cool. I mentioned why I started to blog and what I get out of it, and enjoyed hearing others discuss their own views. One guy was a bit waffly and too keen to share, but there's always one of those.
I left after that as Gordon's mum was minding the children for part of the day. I missed the first train home so dandered around a book shop for a while, picking up a book I've been meaning to buy for a while now. Borderlands is a detective novel set in my home town and surrounding areas. I started to read in the shop and almost missed the train again.
Sometimes it's nice to be reminded that I have a life beyond these walls.
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