In Town

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.

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.

Tyrone GAA win

Photo by Margaret McLaughlin and pilfered from the Irish News showing the Tinnies statues in their Tyrone gear.

I'm a Tyrone woman, so I'm going to take the opportunity to gloat about our county's masterful defeat of Kerry in Sunday's All-Ireland Football final.

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:

1. Baby is born
2. Everyone rejoices
3. Baby grows
4. Mum realises baby is somehow different, something is not quite right, or,
5. Baby develops entirely typically but is vaccinated after which Mum realises baby is somehow different, something is not quite right.
6. 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.
7. 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.
8. 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.
9. 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.
10. 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.
11. 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.
12. 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.
13. 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?

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:

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.

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.

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.

"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."

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!

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:

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.

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.'

Ooh, a timebomb! Look out world. Forget about climate change, global poverty, war and fuel shortages, worry about scary autistic children growing up.

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.

Not Good Stuff

In contrast to all the nice things mentioned in the previous post, here are some things that have been pissing me off recently:

1. Reading opinion on the Tropic Thunder thing. It's clear that many of the people who have some understanding of the evils of racism, sexism and homophobia are much less concerned with the problems of disablism.
2. The stories from the USA about increasing outbreaks of measles and the pathetic responses of those who oppose vaccination.
3. The terrible comments seen now and then on pro-science sites attempting to understand the irrational attitude of those parents who blame vaccination for their children's autism, but which end up being disgustingly disablist instead, comments like this, comparing the dangers of infectious diseases to autism:
   

"To her, it probably is. Most victims of childhood diseases like measles and chickenpox either die or recover completely. Those that die ... well, their pain is over, and (in most cases) those left behind will eventually adjust to their loss. Even the diseases that can cripple or disfigure don't affect the person's ability to lead a more-or-less normal life. Hell, a polio victim once became President of the United States!

But the more severe forms of autism (or any other brain-damage condition) destroy the victim's life without - quite - taking it away completely. It's said that the worst experience a parent can endure is having to bury their child. I'm not so sure of that. It's entirely possible that having a mentally-disabled child is worse, because it never ends and there's never a chance to adjust to it or recover from it. The wound is reopened every single time the parent looks at what is and thinks about what might have been. I'll tell such people that they're mistaken, but I try to never belittle the anguish they must feel."

I had to write something about that:

"Dawn2 (an anti-vaccine stupidity promoter) made a comment that makes no sense and makes her sound rather unhinged, but wolfwalker's comment might be the most callous, disablist and bigoted one I've ever read here.

Do you really think that parents dealing with the death of their child, suffer less than those dealing with a disabled child?! And who gets to define what constitutes a "more or less normal life"? My autistic son may not have the same ambitions or abilities as his non-disabled peers and siblings, but I can guarantee you, that I am happy to have him alive and will support him as well as I can. He would not be better dead than disabled. Oh dear, I'm shocked, you actually wrote that having a son like mine might be worse than having a dead child! Think again wolfwalker. Parents who think like that have sometimes gone on to kill their children.

People who think like that are just plain wrong, always."

S/he (wolfwalker) responded to my comment with;

"Sharon, I intended no offense and I apologize if any was taken. I certainly don't wish death on any innocent, whether they're autistic or not. Being single and childless (both by choice), I literally do not know which would be worse, having a severely autistic child or losing a child entirely. All I know for sure is, I never want to experience either one and I have a great deal of respect for those who have been through either experience and survived it with their sanity intact.

Please note that in the comment that got you so angry, I said a severely autistic child. I read your linked post, and I will tell you flatly that your son's condition is not what I had in mind when I wrote that."

Wow, talk about missing the point. Aside from the fact that Duncan's diagnosis is "severe" autism, there is no way of being alive and autistic that is less preferable to being dead. S/he claims to have respect for people who have experienced such things but fails to understand that society's horrible attitudes about the value of our children's lives add greatly to our stress load.

Good stuff

1. Duncan's drawings and books.
2. Squishy little boy cuddles in bed each morning.
3. Lady growing up, taking more of an interest in the world, in music, in wanting to learn and develop and having fun with her mates.
4. Thomas changing so much over the summer, leaving more of his early childhood interests behind and spending more time than ever with other little boys.
5. Thomas and Duncan playing silly, fun games together in the mornings or just before bed, games like "ghost" and "smelly feet" that involve lots of laughing and tickling and chasing.
6. Duncan playing outside while an adult hovers by the front gate to check on him now and then, knowing that his siblings are also keeping an eye on him.
7. The neighbourhood children all getting to know and accept Duncan as he is, and answering their reasonable questions about why he does certain things or can't do other things. Seeing them greet him and sometimes play with him, though he usually prefers to just play his own game somewhere near them.
8. Pippi, our cute pup, who is starting to be much more responsive to our commands and who seems to have a special bond with the person who was least keen to get a dog in the first place.
9. Duncan's skill with his new PC game, Railway Simulator. We've figured out how to upload Thomas trains to the programme and he's having the best time recreating the stories in detail.
10. Breakfast in bed every other morning.
11. The Olympics, more fun than I'd expected. I loved the diving and the canoeing, and obviously, the athletics. The Jamaican men and women were astonishing, especially this guy. We all celebrated and cheered-on their successful races.
12. Getting our back garden sorted. The gardener who oversaw the building of new walls and mended fences came by for his cheque yesterday and we chatted about family and living here and he mentioned that his youngest child was recently diagnosed as autistic. He spoke lovingly about her chattiness and extraordinary memory and I told him about Duncan. It was nice.

autism autistic Ireland

Mini-holiday

Gordon had a few weeks off work and we intended to just spend time together at home with perhaps a few outings.

The children were looked after by their amazing grandparents and Gordon and I spent a night at a Donegal hotel called Harvey's Point. What a place. If you are ever in the area, stay there, or at least dine there. It was perfect in every way.

Once back home, we realised that it's just nice for everyone if we can leave home even for a short time and have a proper break from the routine chores and demands.

But what about Pippi? I didn't want to leave her (I mean, look at that wee face, how could you leave that?) so she had to come too. I looked online and found a house to rent where dogs are welcome. We packed up and went the next day. The house was beautiful, if rather hard to find up in the hills of Inishowen and overlooking Lough Foyle. Thankfully the owner met us at a convenient point and showed the way.


We settled in and made ourselves at home. The children and pup explored the new place. Duncan, dressed as usual these days in his self-designed Clayton-the-hunter gear, enjoyed the Border Collie who came to play in the garden, tossing a ball and his toy gun for the dog to fetch, as well as on occasion, pretending it was a gorilla and shooting it. (Clayton is the bad man in Disney's Tarzan and indulges in such vices.)


We headed to a beautiful beach for a few hours. Thomas did not want to be there, as evidenced by that face. But the rest of us enjoyed it. Duncan filled his welly boots (part of the Clayton look) with a sand and water mixture and claimed to be making toffee. Pippi, who is still kept on-lead when out, got very excited at all the other dogs and barked lustfully. One of these well behaved dogs and his owner appeared to be rather taken aback by our ruffian pup whom we've started to call Asbo pup. Ah well, we're well used to people staring at us as one of our charges makes more noise than is deemed appropriate.

Ten years ago today.

Lady was 5 days old. One of Gordon's best friends and his mother visited our home to meet the new baby. The sun was shining and the world seemed to be a kind, good place.

Then there was a call from home, a small town in county Tyrone not far from Omagh. For the first time, I heard about the bomb. I couldn't understand; why would there be a bomb going off in the middle of Omagh on an ordinary, sunny Saturday? The Irish people in the north and south had recently voted in huge numbers to accept a peace deal and in Northern Ireland, voters had elected First and Deputy Ministers for the devolved assembly. We had made it clear to the thugs with guns and bombs that we wanted an end to their rule of terror and that we were willing to accept compromises and make deals with our neighbours for the sake of living in peace. (The above photo shows the town minutes before the bomb, hidden in the red car, exploded. Several of the children on the left were killed.)

But the dissident republican murderers didn't care about what the people clearly wanted. They decided to plant a bomb in a town full of shoppers, children out getting school uniforms, day trippers and workers. They deliberately gave false information in the phone warning, so people were moved towards danger not away from it. In the end 29 people including 9 children died. In addition 2 unborn children died when their mother was killed.

A few of my family members were caught up in the carnage. One of them, only nine years old, was very badly injured and though he has thankfully recovered, he had to endure multiple major operations.

So that horrible day passed and the extent of the death and suffering was made known. Today, I want to pause to remember those who lost their lives, those who were injured and disabled, and the families left to grieve. I remember that no-one has ever been held accountable for the crime, and hope that those involved suffer for it, in some way, some day.

That film and that word

So there's this film that's just been released in the US. Ben Stiller has co-written, directed and stars in the film. It makes frequent use of the words retard and retarded. It features the stories of a white actor who is made up to play a black man and a non-disabled actor doing the whole bowl haircut, bad teeth and crap dialogue in the film-in-a-film, with the tag-line, "Once upon a time there was a retard."

The white actor who dons black-face is admonished by black characters in the film, but no such denouncement occurs for the other character. Instead he is told that the reason he failed to gain Oscar success, unlike previous actors who portrayed disabled characters, is that he went too far with the character. The line used at this point has already gained notoriety and T-shirt slogan status.

In flicking about I found this interview on Entertainment Weekly with the actors:

The challenge with that character was to find the right line. You want to make fun of this pompous actor, but if you play it wrong, it verges on being minstrel-like. Your costar Brandon T. Jackson told me there was a scene in the script where Osiris uses the N-word and that he said it went over the line.

ROBERT DOWNEY JR.: Brandon might have saved the movie that day.

BEN STILLER: For sure. We were rehearsing in Hawaii and we got to that scene and I said to him, ''What do you think of this?'' Brandon said, ''This feels wrong.'' It was definitely a constant process of feeling it out.

So the black actor advised them on what was going "over the line" on what "feels wrong" but they never thought to consult with disabled people about what might cross lines or feel wrong in their use of "retard" or the many examples of insensitive dialogue and portrayals detailed here.

I'm glad disability activists are speaking out about this. I'm not going to join them in asking people to boycott the film. I won't go see it myself. Until I knew about all this stuff, I had intended to go as the trailer I saw looked bloody funny and I really like some of the films Stiller has been involved in. Other people can decide for themselves. I know there is an important distinction between trying to ban something and deciding not to go yourself. But there is a bit of me that feels it's all a bit "down with this sort of thing." The film has already been made unfortunately, and we can't decide what other people choose to watch, read or say. But we can inform them on what we think about the controversy and why.

A blog I read had a post up arguing against the "PC vampires" and their weak euphemisms and making a case for people to use language as and how they see fit. I commented there, and I'll copy from that here 'cause I'm too lazy to write the same stuff down twice.

I don't think the word retard should be banned; how do you ban a word anyway? But like some people who have learning disabilities or have family members who are learning disabled, I don’t like the word and want to educate people as to the reasons why.

Retard is an ugly, hard and hurtful word. People can keep on saying it if they want, knowing that choosing a word that refers to people like Brent Martin (beaten to death because a few lads thought it was fun to pick on the ‘tard) or my son or the thousands of people like them, and using that word as a short-hand for stupid, moronic, pathetic, just devalues these people and hurts them.

Some wise people have explained the history of ugly words and how they cause harm. Others can clamour for their freedom to label stupidity after a term used to describe my son’s developmental delay. They can fight to call gay people faggots. It’s different when you know someone well enough and can make an in-joke. But not in a million years will I use a term associated with hate speech. Do you think when bigots attack, they accompany each kick with the PC words, or might they choose the strongest, most hateful language possible?

I don’t know why people are so desperate to be able to keep saying retard as an insult. I think everyone can say and write what they want. I can choose who I talk to and what I read. Just be aware of the reasons why some of us wish that word could just be quietly dropped out of circulation.

Please, just read this one post, then decide if moderating language can be the right thing to do.

And how do you make the distinction between hate speech and offensive speech? Yes sure retarded is a valid word. If I put sand in my car’s tank it would retard its performance. My son’s development is retarded compared to his typically developing peers. (I’m not going to refer to them as “normal” as that just makes him by default, abnormal.) Those are perfectly fine uses of the word.

But using that same word to mean disabled people like Duncan, and then using it as synonymous with stupid, pathetic, crap is not nice. If you drop your glass, or bash into a wall and your mates call you a retard or say “jeez you’re so retarded” then a judgement is made on learning disabled people as the epitome of thick.

Oh and just to round off, here’s a much funnier and less wanky way of making the point Stiller claims he wanted to make with his movie. It's the episode of Extras with Kate Winslet. Watch out at 4.40 in particular and notice the reaction of Gervais' character. Excellent stuff.