27 Mar 2009

Paris

After all the stresses and strains of the past few days, I am so very happy to be going away for the weekend with Gordon to Paris.

La Lune aux Champs

We married 13 years ago, and are off, leaving the children with my dad and step-mum (blessed, wonderful, amazing individuals that they are) and escaping everything tiresome, distressing and difficult for a few days of rest, food, wine, beauty and fun.

But first I will have a day of running around like a wild thing, sorting and tidying.

Au revoir, mes amis.

But that's not what I expected!

Gordon and I took Duncan to the doctor yesterday. In my referral letter, they'd said that the building was being renovated in parts so we were to use an alternative entrance and that parking might be limited. Duncan likes going to this hospital, calls it the nice hospital as he likes playing with the toys in the waiting room.

Unfortunately, we were told to wait in a different area, crowded with people of all ages. Duncan was not pleased and wailed and cried and shouted. I asked the receptionist if we could go the other waiting room as it's what he's used to and what he expects when we go there. I hadn't known it would be so different and he was unprepared for such a change. I was told we could not.

So he cried and shouted some more and the others waiting either avoided eye contact or adopted that pursed lip, disapproving look at my "very naughty" boy and my inability to "control" him. I told Gordon (who was not able to help him either) that I was going to wait in the car and asked him to get me when they were ready. Instead he gave the receptionist our phone number and joined us in the car. After a few minutes we were called out and led to the toy filled waiting room which I'd wanted to go to originally!

What an avoidable load of hassle. Eventually we were seen, a full hour after our appointment time, and in a tiny room located right beside a load of builders wielding jackhammers and drills. All this conspired to make a very unsettled boy. Duncan played for a while but soon got upset again and was looking for a toy train he played with at a previous appointment there. I was utterly frazzled and Gordon wasn't doing much better.

I looked after Duncan in a quiet hallway while Gordon talked to the doctor. We're going to get some involvement for the first time ever from the social care team, who might be able to help us find some activities for Duncan. We also got a prescription for a methylphenidate drug at the lowest dose. I'll get the medicine early next week and we shall try it out, that is if I can get Duncan to take it, and see what happens.

25 Mar 2009

Johnny Ball, what happened to you?

I listened to Stephen Nolan's bumptious phone-in show on local radio this morning. He had a few people on discussing our climate change denier Minister for the Environment, Sammy Wilson and his latest kerfuffle in Stormont. The Belfast Telegraph reports that his department admitted that he, "did not consult any scientific articles when deciding not to air the Westminster-sponsored Act on CO2 ads."

Naw, our Sammy came up with that grand idea off his own back. He knows better that them scientists with their ungodly evidence.

He called another assembly member the 'carbon king of Stormont' because he lives 100 miles from the parliament building and has to drive, public transport links in NI being utterly pathetic, and getting worse the further west you go.

But then, once the drone of whinging politicians blended to innocuous background noise to my kitchen cleaning endeavours, Johnny Ball was on the air again, blustering about matters he doesn't understand and ruining my good opinion of him.

He used to be an exuberant presenter of children's TV shows about maths and science, and is fondly remembered by nerdy types of a certain age:



But he has turned cranky in his old age. He said today that "Sammy Wilson is right."

"People are talking about a carbon footprint. Carbon dioxide is half as heavy as air again. It falls to the ground and it feeds the plants. A tree is made of CO2, it puts the oxygen back into the atmosphere and takes the carbon. 85% of every tree is CO2...
When you're talking about CO2 you're helping the plants, you could say you're greening the planet."

I think that here, Johnny has employed the logical fallacy known as the WTF? fallacy.



But he goes on (and on and on) and eventually, near the end of the interview, he gets to the "dangers of scientific consensus." He even has examples, 100 years ago, so Johnny says, all the scientists agreed about eugenics. I think he's trying to make the point that we're more enlightened now and have moved on from those bad old days, something I'm not so sure about. He also mentions how in Darwin's day, the consensus was against him. But he neglects to mention that the science consensus changed to adopt the new ideas when they were explained, understood and backed up by huge amounts of evidence. Does Johnny really think that scientific consensus is always dangerous? What about our ideas on gravity, germ theory, what about consensus on units of measurement? What a ridiculous argument.

Silly old duffer. And why on earth has he been asked to come on to the programme to talk about climate change? Is it really reasonable for the BBC to allow this man 7 minutes to talk a load of old nonsense, just because he was once a wacky kind of kids TV presenter?

21 Mar 2009

Decisions

I've had better days. Sure I've had worse, but I'm worn out and feeling negative. Dealing with Duncan today was no picnic. He's been shouting, screaming, wanting to have things go his way and making loud protestations when they don't or can't. My head hurts from the noise. He's full of plans to act out songs and not everyone wants to play along. Lady had 2 girls over to play for a while and he was roaring and thumping on her door to get them all to line up and pretend to be marching ants or something. Later, he threw a toy and it hit a picture hanging over our bed, shattered the glass which scattered all over the bed and floor. Thankfully he'd been standing in the doorway and wasn't hurt, and it had been an accident but it made me feel closer to overload. He was very sorry and drew one of his apology pictures.

But he's been acting, I think, more loud and hyperactive recently. It might be an effect of winter weather and not having enough time outdoors, which will improve with the better weather. He has an appointment with the paediatrician soon and I have been reading about people having ADHD with autism and looking into stimulant medications. It seems from the trials that children with both conditions can benefit from very small doses of stimulants like Ritalin. I will talk to the doctor about the possibility of trialing one of these drugs with Duncan, using the smallest possible dose and keeping a careful eye on the side-effects it might have. Though I'm anxious about using such medication, at least I can be sure these drugs are approved for the treatment of ADHD. I think it's worth trying it out as it might help him concentrate more on tasks other than film making, and help him learn more easily. And if it doesn't help or has side effects, there is no noted risk to suddenly stopping the medication and we can try something else. There's always something else to try, drugs are NOT "my last hope" or anything. If this fails or if I'm advised not to try them, we'll be fine.

On a related matter, I was tidying a cupboard and showed Duncan some pictures of his old school, not the one he went to last and which he asked to leave, but the school before that which he had always (as far as I could tell) enjoyed. I had preferred that school too and only moved him as the 2nd school had opened a dedicated autism unit which I'd thought would benefit him more. But the home-school communication wasn't as good as at school 1; there were a few notes home that baffled me. For instance, I was told once that Duncan wouldn't settle down and insisted on "running around too much" during a PE class in the school gym!

Anyway, Duncan asked to go to the school and named one of the children in the picture. This is a child he hasn't seen or heard about for 3 years! I asked him in surprise if he wanted to go to school, and he said, "go to school and play with the toys and then come home again."

I got thinking, often a dangerous pursuit. Perhaps it is time to try out school again for him. (Lady and Thomas are utterly uninterested in school.) While I can take him out with me, there are no groups around here that he can be part of, unlike his siblings who are in various sports and social clubs and who see their friends from the street regularly. He went to a Saturday club for learning disabled children twice but he was just too autistic for them, and anyway, it closed.

There are pros and cons no matter what I decide, and I just want to know what is best. Again, if he does go and is not happy, I can simply stop sending him, but is it worth the potential upset to find out?

I'm going to contact the educational psychologist and ask to meet her again and then I'll take a tour of the schools and meet the teachers. He will have to go to one of the "special" schools as there is no such thing yet as proper inclusive education and he would flounder at a mainstream school. Besides, I'm not counting on school to provide the main aspects of his education, he'll still get that at home. I just want him to have a chance to go out somewhere and be with other people now and then.

No doubt I'll update here when I know more.

19 Mar 2009

Who do you love the best?

I spent most of Paddy's Day '09 with my 2 boys. We baked cakes then covered them with green icing and jelly beans. A few special "chuckie"cakes (don't bother me with the spelling M, I'm being ironic!) got the green, white and orange beans and these we took to my dad's place where we were having dinner. We all had a lovely evening, Thomas played Kerplunk with anyone willing to give him a game, Duncan jumped on the bed and pulled the rail off a wardrobe - oops. Daddy said that he had to sort his clothes out anyway. Right. Duncan also enjoyed a few tickling and tumbling games with his Granda, especially "throw me over the balcony," an exciting swinging game and "take him away" in which he kisses Granda who pretends to want rid of him and I or another volunteer try to prise him away. They invent new ones every month or so and it's all very exciting.

Duncan headed off to the loo taking the Argos catalogue with him so I knew it was a sit-down assignment. A few minutes later we heard pouring water and he'd decided to run himself a bath. He had a lovely wee soak, splashed the bathroom and got himself all nice and clean again.

Eventually I decided I'd allowed everyone to enjoy the pleasure of my boisterous boys for long enough and we headed home. It was nice to be asked out, much better than sitting home all day.

In the car, Thomas was muttering to himself then wondered aloud what his last word would be. He'd had a first word, he explained, so it made sense that he had to have a last word too. I said that my last words would probably be something like, "just another slice please!"

Later in the evening Lady returned after a very successful trip to Donegal with her pals. Unfortunately she arrived at that part of the day when I've just about run out of cheer and good will and I was giving out to Duncan for some mess or other he'd created and she was saddened to see me cross and sadder still that her Daddy would be away for the next 3 nights for meetings and lectures. But they had a great chat the next morning and she felt better again.

The next day we ladies watched Pride and Prejudice (Ehle and Firth version, yummy) while I combed her matted hair for hours. It's all nicely plaited again now. Then while the gymnasts in the family did their thing, Duncan and I went shopping, he sitting in the Tesco trolly for disabled children. Right by the trolley park was a mound of Easter eggs in Thomas the Tank boxes. Uh oh, chocolate and Thomas combined, a potent mix. He picked one up, examined it and said, "Thomas! Duncan likes it the best!" Then he thought for a while and said, "and Thomas likes Doctor Who the best and Lady likes Bratz the best." (He's a few years out of date with that last, but it's nice he's thinking of them.) I asked, "What does Mummy like the best?" He answered, "Mummy likes Duncan the best" earning a big smile and affirming hug from me.

17 Mar 2009

Happy St Patrick's Day and another new blog

Happy Paddy's Day to each and every one of you who read what I spew forth onto this blog via my cracked laptop every so often.

Our favorite leprechaun
Photo owned by Irish Philadelphia Photo Essays (cc)
I guarantee I will not be mixing with his type at any stage of the day.

I'd say the parade in Dublin will be good, but I've never been to the Belfast one and have no intention of changing that habit. Our trip to a local parade last year ended in mixed success. Since I'm at home with just the boys, we're just going to make some little cakes and cover them with green icing before devouring with a nice cup of tea.

We'll go out to see the my dad and step mum later and I think it's much wiser way to share the day with people who care for us and who won't tut at non-normal children.

Also, I've been encouraged/persuaded/forced to start up a blog for Duncan who wanted a blog of one's own. Go and have a look and say hello. You never know, he might even not ignore you!

16 Mar 2009

Encounters with friends and neighbours

We've had a few friends come to visit in the past week or so. First, a friend of Lady's, whom she met at gymnastics stayed over for 2 nights. The 2 girls stayed up really late on Friday night, chatting and giggling then both had collapsed in a heap by 7pm the following evening. Thomas did his ju-jitsu grading (he's on the orange belt now!) despite Lady and her pal going off for a walk before we needed to get out to the sport's centre and sauntering back home 20 minutes after we should have left. I was one angry mummy as we eventually got on our way. She's a good hearted girl, the very best, but phew can she make me mad with her day-dreaming forgetfulness. In fact, she reminds me of myself at her age, same desire to wander off on explorative walks, poking at holes by tree roots, collecting leaf and flower samples, and best of all, looking for wriggly things in ponds. Lady had landed back with a jar full of frog spawn that I then had to get a tank for. Kids eh.

Our next visitors were some good friends who live close by and who also are learning without school. Lady and Thomas enjoyed their company greatly. Duncan wasn't much interested most of the time, but he did get them to join him as he played out the scene from Snow White where the 7 slovenly dwarves return from work and are surprised to see a pretty girl has opted to cook and clean for them all. Patriarchy, bah!

As so often these days, Duncan requested that I film their escapades. He often edits bits from these films (at least those involving just my own brood, other people's children are safe) cut with Disney film pictures. He's got loads of them on YouTube now. One of his Robin Hood series had the following great slide:
Robin Hood
The Speicel A Dishon


I'm sure you can decipher his invented spelling.

Another family were round later for a few hours. These people live just up the road and one of the 3 children is autistic. I got to meet him briefly once as he's been at school where he stays for 3 (or 4?) nights each week when his mum and siblings were around. I hope he can visit properly soon, but I'll have to do something about Pippi as he's really scared of dogs. His mum is lovely and we got along really well. She shared my outrage over the autism manure book and the father writing that he'd prefer his kids had cancer, not autism.

Here are a few videos I took a couple of days ago showing Duncan's self devised Pinocchio outfit. Unfortunately this costume did involve the mutilation of a few innocent tops to achieve the correct layering effects. But the clothes involved were very cheap and just about too small for him anyway. I've asked that he gets my permission before cutting his clothes up in future. Anyway, it's my pleasure to introduce, Pinocchio, the dancing puppet and his pet dog Pippi.





As I was writing, he told me to out his Rugrats picture "on the blog," said with such a proprietary air. I aim to please:

Lady's gymnastics friend's mum kindly took her out with them to watch her first ever ice hockey match which starred the Belfast Giants. She arrived home elated, with a signed photo of some handsome, burly hockey player and painted stripes on her face. I'm not even sure if her team won, but they all certainly had a great time. She says that I have to take Thomas to the next match as he'd love it. She's been staying with the same family at their mobile home in Donegal since Saturday. I hope they aren't getting sick of her! She's called home twice to say what a great time she's having. No doubt there'll be further details on her own blog presently.

Gordon's Mum offered to babysit the boys on Saturday night. Not surprisingly we jumped at the chance to get out together and headed out for a really nice meal. It was kind of a special evening.

This morning Thomas wasn't feeling the best and though I'd hoped to take them to W5 to meet up with friends, after Thomas forcibly expelled his stomach contents orally all over the dining room floor, I decided that we'd be better to stay put. So I cleaned up and when he was settled again, I read him a few more chapters of Harry Potter 3. Later he declared that he was feeling a bit better but, "I'm not 100% yet, more like 50% so I've 50 still to go." How do you know when you're raising a nerd?

I must end and tidy. Gordon heads off for the rest of the week for meetings and lectures here there and wherever. No doubt, the fun and games will continue without him.

7 Mar 2009

"Special Needs"?

What do people think of the term "special needs" to mean disabilities? I don't like it. I know it's in common use. Disabled children in UK schools who need them are allotted (often after a fight from their parents against intransigent education authorities) statements of special educational needs. When I lived in outer London, we used a toy library and went to a fantastic playgroup at the Project for Children with Special Needs. In fact, in my old Borough (Richmond Upon Thames) there are a whole load of services with the "special needs" label.

It strikes me however as an anachronistic term. I don't know of any disabled person who would describe themselves as having special needs, sort of like normal people but with extra, special additional needs. It is a term I think, only parents and professionals would use and usually only when referring to young children. It has a very infantilising ring to it, to my ears anyway.

I am asking these questions now as I recently learned (via jypsy and then on Dave Hingsburger's blog )of a Facebook group created to tackle the hundreds of other Facebook groups and pages whose aim/title mocks disabled people, groups started by people with a droll wit of almost Wildean proportions with titles like "Hott Retardz" (that's humour to test one's pelvic floor right there).

The group aiming to tackle the disablism and hate these groups engender is called, FACEBOOK: STOP ALLOWING HATEFUL GROUPS THAT MOCK PEOPLE WITH SPECIAL NEEDS

I have exchanged a few messages with the group's creator about the title and asking if she would consider changing it, while acknowledging the laudable aims of the group and her right to utterly discount anything I would have to say.

In a reply she explained that special needs is the expression she always uses when referring to her daughter and that she has asked "many friends with siblings and children with various issues and they prefer special needs."

I have to highlight here the expression, "nothing about us, without us."

It is not good enough to just ask parents and siblings. Disabled people themselves must be central to the issue and effort. There are plenty of disabled people who are happy to take part and explain their concerns on this Facebook group, but these people have not been treated well. I have witnessed 3 different disabled people come in to discussions on this group who have all been told that their thinking is amiss and that they need to learn from parents what the right way to talk about themselves is.

I have also seen many people (all parents as far as I can see) complain about the discussion on words and terms as distracting from action. This makes no sense to me when the point of the group is to tackle the use of words like "retard" used in offending ways.

I'm was also surprised to read her view that to, "many people we asked, disability had a more negative connotation than special needs."

Andrea Shettle posted publicly to the group, asking the same question politely and gently. She was attacked by one group member and told that she was being condescending and stuck in the seventies for preferring the expression "disabled people" or even "people with disabilities."
When I questioned this person's dismissal of Andrea's questions and meanings and pointed out that it might be worth listening to and learning from disabled adults, he told me that I must be happy to be spoken down to.

Amanda Baggs then stepped in with a detailed and powerful series of posts explaining all the issues about how parents have too often ignored and marginalised the efforts of self advocates, about the important role we have as allies, and how damaging it is (with several eye-opening examples) to claim that we parents are at the "heart of the disability community." She explained that her posts were lengthy as she has difficulties in summarising her thoughts and that she wanted to be as clear as possible on an important and complicated issue.

The same poster who had earlier been rude to Andrea now claimed untruthfully that Amanda was attacking him, he put words into her mouth (that she wanted to let people insult his child!) and he rudely called her long winded, but did not engage with a single thing of substance that she wrote.

Wanting to tackle disablist practices and injustice on Facebook is great, but it has to start in this group before I can be part of it or invite my friends to join. Nor can I be part of a group that thinks the very word "disability" has negative connotations.

5 Mar 2009

Remembering

On this day 13 years ago my mother, then aged 49, died after living with cancer for 10 years. I think about her very often, and not with sadness either. I'm lucky enough to have had years to know her, to be raised by her and my Dad in the knowledge that we were all completely loved and cared for.

IMG_3435

Mammy (as we all called her) was amazing. It's hard, no impossible, to explain just what she meant to all of us who were close to her and loved her. She could crack you up with a little aside about someone or something, she was smart but I don't think she knew it, having been convinced by one too many nun of her academic inferiority at school. She was to me, utter safety and comfort. She believed in me and supported me, hassled and nagged when necessary. She wanted the best for us and though I know that in one thing I have let her down, I have turned away from what she cherished most in life after family, I think she'd still be proud of me now...though she'd despair of my much less stringent standards of housekeeping.

I miss her much, I miss her when there's a big event, a marriage, birth or death. Oh how she would have loved her grandchildren! When Lady was born, I was blown over by the knowledge that I would be as big a presence in the life of this child as my mother had been in mine. I miss her some days just out of the blue when something makes me remember her, a game show (she liked to see the prizes spread as fairly as possible rather than one winner taking it all) or an overblown song performance (she was irritated by singers throwing their arms around and going all theatrical) or when I catch myself parroting a saying of hers.

Some of my most prized possessions are our old family photos and the letters Mammy wrote to me when I was away at university. In these, she wrote as she spoke, same little phrases and colloquialisms (the very things the unenlightened nuns might have marked her down for). I can hear her voice clearly when I read them.

She didn't have long enough, and too much of her time was hard and involved awful suffering. But she was our Mum, the best you could have and an inspiration to me. I think I've perfected her hugs and kisses, and there's a fair number of choice chastisements that I'm passing on faithfully.

28 Feb 2009

Facebook and Twitter cause autism

Or was it dog shampoo, plastic toys, forward facing strollers, vaccinations, refrigerator mothers, TV, rain, old sperm (though I suppose it depends on what you do with it) or wi-fi?

Susan Greenfield, head of the Royal Institution, raised concerns about social networking sites in a House of Lords debate:
"Perhaps we should therefore not be surprised that those within the spectrum of autism are particularly comfortable in the cyber world. The internet has even been linked to sign language, considered as beneficial for autistic people as sign language proved for the deaf. Of course, we do not know whether the current increase in autism is due more to increased awareness and diagnosis of autism, or whether it can—if there is a true increase—be in any way linked to an increased prevalence among people of spending time in screen relationships. Surely it is a point worth considering."
But, but Susan...don't you know that people are born autistic, they don't just catch it when they're 14 and setting up a bebo account. Lolz!

I was gratified that Ben Goldacre (cutely) destroyed the argument on Newsnight.



I'd say more about how ridiculous this is but I just found a great post on Stottle's Blog and since it's so much better than anything I could write, anyone interested could pop over there to witness the notion getting a thorough smacking.

27 Feb 2009

More Manure About Autism in the Media

Sweet mother of mercy have they taken leave of their senses. Some dude wrote a totally ridiculous book, and the newspapers give him lots of space to promote his totally wacky notions. Can this be right?

The book is called "The Horse Boy" by Rupert Isaacson. The Times features the book opening with the title,
"Shamans and horses work magic on autistic Rowan
Rupert Isaacson was almost at his wits’ end over his son’s demonic fits, but a riding trip in Mongolia to visit local healers brought an amazing change"
"Demonic fits"...I ask you. How is this stuff cleared for publication, doesn't anyone catch themselves the hell on and think that perhaps such language might be offensive, inaccurate, discriminatory?! And given that the young son of a prominent politician died this week, a child who had epilepsy, couldn't they have thought to be a bit more sensitive in their choice of language.

In the first paragraph of the article we learn that,
"Rowan was autistic: incontinent, uncommunicative and given to fearsome bouts of nerve-shredding screeching, even at home."
But obviously, he couldn't possibly have been (for example) autistic, sweet, cheeky, athletic and into Formula 1. That wouldn't create the same levels of drama.

The article continues as these things tend to (see my post on how to write a book about your autistic child), by explaining how they came to notice the child was different and how he was diagnosed and they were devastated (can't they come up with a new word for this- I suggest dismayed, inconsolable, disconsolate...I'm sure the rest of you will have more suggestions.)

Actually, by the time I'd read that far, I was thinking that this all felt very familiar and I found an earlier Times article lauding Isaacson and his notions. Since then, someone has backed his plan to sell his Mongolian adventure book and film by pitching it as, not just another well-off westerner meeting the natives, but as a quest to cure his poor, suffering son.

Autism is so hot right now.

He tells about the day his child, aged two, ran into the middle of a group of horses and lay on the ground. Luckily he wasn't killed, and his Dad was able to read from the horses' reaction that actually, his son had inherited his "horse gene." I'll bet.

The son got on a horse and IT'S A MIRACLE!!! he said a few words. Why is this always presented as such a big deal? Something strange happened when he was on the horse.
“He began to talk meaningfully, not just babble or recite Thomas the Tank Engine train names,” says Isaacson. “For the time we were together in the saddle there were no tantrums. It became a place of respite and joy.”
While it's nice that the child enjoyed horse riding, his previous speech probably wasn't just "meaningless babble" but was an important stage that all children go though as they're developing the ability to speak. Duncan's early words were almost all repeated phrases for films, and much of it still is, but his speech has real communicative intent.

The article preps us for the truly wacky stuff to come though, "what happened next has no rational explanation." Too flippin' right!
"when Rowan was three, Isaacson brought a group of bushmen from Botswana to the United Nations in New York to protest against land being lost to diamond mining. Their chief shaman, or “wise man”, performed a healing ritual on Rowan. “It was extraordinary,” says his father. “For five days or so it really was like having a normal kid. Rowan’s symptoms started to fall away. The problem was as soon as we went home he tumbled back into the autism.” "
Aw, it must really gall you to see your child tumble into autism. I'm not sure how it happens, but I'll go with it for now. Not wishing to miss a chance to profit from his son inform the world of this miracle, Isaacson had a film crew follow them as they travelled to Mongolia...as you do.

Here's a but more insight into how this father thinks. He;
"believes that shamanic healing works.

“Once you’ve seen enough people with cancer, or snake bites, or dementia or whatever, healed – and the doctors scratching their heads and saying we don’t know where the tumour’s gone, you come to realise it’s a pretty valid system.”"

I'll just let the full stupid of that remark simmer, no further comment is required.

thirtyfive/threehundredsixtyfive

So this is what they did to "help" their autistic child;
"To western eyes the ceremonies they underwent appear bizarre. One Mongolian shaman told them Rowan had been touched by “black energy” in the womb and it was necessary to draw this negative energy away. Another prescribed fermented goat’s milk. A female shaman beat on a drum while summoning spirits with a whirling, dancing prayer. They were hit with reindeer horns and spattered with vodka."
I once met an old woman who called out to Duncan, and told me that he isn't disabled, he's one of the lost tribe of Atlantis and that I was trapping him in a false dimension with my greasy soul and that if I didn't let her snort snuff out of her nostrils on us both, he'd never progress.

Actually, I was lying there.

Yep, my eyes must be western all right as that shaman stuff sounds like a whole big pile of horse manure. Imagine how that child must have been feeling, dragged across the plains and subjected to all those sensory overloading, invasive, unpleasant and ridiculous interventions. He'd have been better off with a bit of The Shamen, which I think Duncan would quite like though he's big into Gwen Stefani these days.

This bit is hilarious;
"As their trek across Mongolia continued, so did Rowan’s progress, despite setbacks – intermittent tantrums that saw him refuse to go near a horse and reduced his father almost to despair. At last they reached the so-called Reindeer people, reputed to have the most powerful shamans. After a ceremony there, Rowan’s incontinence was apparently cured."
So Rowan was acting as any reasonable person would expect. How is incontinence "apparently" cured? And please could someone please teach these people about conflating correlation and causation!
(Duncan only rarely wees in his sleep now, I credit oxtail soup for this breakthrough...Not really.)

I'll bet you can't guess how it ends...oh all right. They've set up a centre to help other children benefit from horses just like Rowan.

The book/film gets masses of coverage in the Daily Mail too, where they've been publishing excerpts from the book. It's toe curling, hippy bull. Here are a few choice phrases,
"my emotionally and physically incontinent son"
Gack.
"the shaman's assistant passed her spiritual mistress a bottle of vodka, from which she took a hearty pull, then without warning spat the liquid all over Rowan's face and body."
And instead of sweeping your son up and running as fast as possible out of there you let this continue?
"But Rowan was screaming now. Genuine distress. Too much adventure, too tired, too cold, too hungry.
...
The cameraman rode up to our side, filming from the saddle. 'Put the damn camera away!' I snapped."
Had he forgotten it was he who had arranged the film crew!
"I'd taken the poor boy to his edge and he was now falling apart. 'Help!' he sobbed. 'Help me.' Rowan had his eyes tightly shut now, as he retreated into himself.

This is a very bad thing for an autistic child to do - every autism parent's worst scenario, seeing his child shut down, his nervous system overloaded."
No. This is not my worst scenario, not by a long shot. My son being really sick or in pain or suffering at the hands of another, are much worse scenarios to my mind.

And there plenty more where that came from, as demonstrated in another piece in the Daily Mail:
"My son was diagnosed with autism in the spring of 2004, when he was two. It was like being hit across the face with a baseball bat. Grief and shame engulfed me: weird, irrational shame, as if I had somehow cursed this child by giving him faulty genes, condemned him to a lifetime of living as an alien because of me.
And then came the pain of watching, horrified, as he began to drift away to another place, separated from me as if by thick glass. "
Oh pull yourself together, this is just silly, there is no glass, no drifting. There is just your child with a brain that works in a different way who needs his parents to adapt and meet his slightly alternative needs.
Now came something new: a demonic, almost possessed edge, materialising suddenly out of nowhere.
Again, the demonic thing. What makes these people think it's an acceptable way to label their own children to millions of the reading public?
"Our hope that our son would share a life of adventure with us was dashed.
Instead, our life became a mechanical drudgery of driving from one therapy and assessment appointment to another and dealing with insurance companies, therapists and our son's ever-increasing, inexplicable tantrums"
From the earlier Times article, linked to above, he's explained what these therapies are and some are far from mainstream. Before they went gallivanting east, they were pushing chelation chemicals on the boy. This stuff is dangerous and useless in autism. There is no need to spend time and money chasing a cure. Acceptance, education of self and your child, an optimised environment and knowing what makes your child tick are far more important.

And I can tell Rupert Isaacson, I didn't have to drag my son anywhere. Wherever we are, we're sharing this voyage as a family together, and there may be ups and downs, but I wouldn't want to be travelling with anyone else.

A new blog of quality and interest

Lady has started back on her blog, Looking in Rock Pools. It had previously been set to invited readers only but she wanted to go public and let everyone enjoy her erudite and informative posts. She had abandoned it for almost a year but updated again today. She says she has loads more things to write about and it's all good practise for her. So pop over and say hello to my girl.

26 Feb 2009

Irish Blog Awards- top blogs I discovered

While reading various blogs in the past month or so as part of my duties as one of the many judges, I encountered so many blogs I didn't know existed, not so surprising I know! A few were utterly dire, clearly I won't link to these, but some of them I loved.

Fist of all Daddy or Chips? which seems to be a magpie sort of blog picking up on fun, pretty and shiny things. I'm happy to be corrected if I'm missing layers of deeper meaning, some sort of rage against the system. It's got pop and well built men and more pop and I liked it a lot.

Next I want to highlight Stranded on Gaia which somehow I'd not read before. It's a popular blog, frequently updated with funny as hell stories and rants and some top quality swearing. I'll be back.

I discovered what might be the most beautiful blog of the lot, Lickable Wallpaper. It's by an Irish couple who did the most marvellous thing; quit jobs and everyday safe life to travel the world. The blog records their journey with fantastic photos and makes me so very jealous. (If you're reading Cathy, you'll love this one.)

I met Eddie at 4am or so after the awards when just 4 of us remained sitting around the skewed world-map table (Ireland was shown as x2 times Britain's size) and talking until the cleaners arrived the next morning. We only went to bed in case we were given a cloth and some polish.

I don't know what they're going to do now they have come back home, but I think it would a shame to let such a great blog sit untended.
So Eddie, g'wan and get back to it.

I looked at many amazing photoblogs. These people are all astonishingly talented, but one of those that I loved and which didn't make the shortlist was venividi, a blog by a Polish person living in Cork. I'm no photographer (which I hope doesn't make my praise too limited!) but I thought the images presented were amazing, telling stories, captivating and making me wonder what was happening and wanting to know more about the subject. There was a lively discussion on each post some in Polish and some in English.

Many of the photos were taken in Cork so as I walked around the city on Friday and Saturday, it seemed at times to be that bit more familiar as I spotted scenes and places I'd seen in the blog.

I may think of more in time but that'll do for now. Good on you all for what you've created.

25 Feb 2009

Kissing Maid Marian

Duncan continues to draw and make films on the computer. Usually these days, he is dressed in his short green trousers, and a green t-shirt he customised with a pair of scissors, cutting the sleeves shot and shaping the shirt bottom to medieval style zig-zags, finished off with a yellow hard hat. He got a grey fleece hat a few days ago, and asked me to "read it" (name it) and now he wants me to buy a yellow fleece hat with a bright red feather.

Many times he has presented me with the camera and asked me to take a photo "like that" as he does some move or other. It's videos he wants, not photos and I've made a dozen or so in the past few days. He takes the files and uses movie-making software to add a few effects, text and music then gets me to upload them on YouTube. A few times I've forgotten to log out of my YouTube account on his computer and he has renamed a file or deleted a film. Yesterday however he uploaded 2 films I had never even seen. He did everything in these entirely unaided.

The first is another in his Pinocchio series. He has combined screenshots and downloaded Disney images with his own pictures and set the lot to music from Disney's Dinosaur soundtrack. It seems he has been inspired by an evil Pinocchio YouTube film. He's got screen grabs of this video- I'm going to have to try explaining copyright soon! I hope the maker of that film isn't bothered by having his images used...



The 2nd film is part 10 of the Robin Hood series. In this, he's had me or someone else film him. For most of the film he's trying to kiss Lady, who he's deemed to be Maid Marian, but his hat keeps falling off. he keeps on trying, pausing only to replace the hat and wipe his mouth until he comes up with the solution. Lady and I are cracking up laughing throughout, but he decided in his wisdom to overlay a bit of Black Eyed Peas music. It's a hoot.



He gets his girl in the end.

23 Feb 2009

Irish Blog Awards, great times but how does it work?

I enjoyed myself so much this past weekend. Heading down to Cork for the weekend, staying in a decent hotel and meeting lots of fabulously interesting, opinionated, talented articulate and passionate people. I loved having some time with my beloved little sister and the banter and craic were mighty altogether. The Ladies Tea Party was delightful and the award ceremony was organised and enjoyable. Everyone I met was warm and friendly and all were impressed at how well Damian and all his helpers had managed everything. New friendships were made and old ones strengthened.

It was delightful to return to my family. Gordon met me at the airport with the boys. Thomas blew kisses every time I looked around and smiled at me like a matinee idol, Duncan grinned and held my hand as we drove to pick Lady up from her friend's house. It was a rapturous reception.

Later I had a quick look at the blog which won in my category and was shocked to see that it only started on December 2nd. Now I'll be honest, when the shortlist was announced, I had a quick read through the 4 other "Specialist Blogs" and I thought that the only one that didn't stand a chance of winning was the one that won, Irish Economy. The blog content, while incredibly topical, seemed to me, to be written in a dry textbook style. I fully admit that I only spent a few minutes reading it, whereas I read many posts by the other bloggers, and personally,I was more impressed at their content, style, wit and the level of engagement they had with readers. And what I had taken on first glance to be a blogroll on the Irish Economy blog, was in fact the list of contributors- 24 in total. Each of the other 4 blogs shortlisted are written by just one person.

Now I'm confused about something. Perhaps people will think this is just sour grapes that I didn't win. It's not though...

I was a judge for this year's blog awards. Judging each person's quota of the massive list of nominated blogs began at the beginning of February, only 2 months after the Irish Economy blog commenced. But crucially, the awards nomination rules stipulated that, "to be nominated the Blog has to have been actively blogging between July 15th and December 15th 2008." As a judge, I took this to mean that to be eligible, all blogs (except those nominated for best new blog and best blog post) had to have regular posts in the period stipulated, not that the blog must have had some posts at any point in that time. It never occurred to me to use the 2nd possible meaning. For each blog I judged, I went to the archives and read a large selection of the posts written between July and December and ignored the rest so when I came across blogs that hadn't started until later in the year, I gave them as few marks as possible and wrote my reasons for the low mark in the allotted space. It now seems that other judges interpreted the nomination rules the 2nd way and I fear I have discriminated against many good blogs.

I would appreciate it if Damien or someone who knows, could clarify this. It's too late to do anything about it this year but I hope that by next year, it will be more obvious to those nominating and judging, exactly what the rules are.

PS, I'm really delighted that 3 of the winners were those I nominated; well done, Maman Poulet, Trust Tommy and The Cedar Lounge Revolution, and well done too all the other winners...even if some of you might be glad you weren't judged by me.

17 Feb 2009

Shortlisted for Irish Blog Award

This is utterly smashing. The short list is out for Saturday's Irish Blog Awards and I'm still there in the specialist category. No too bad; about 50 or 60 blogs were nominated in this category, it being the one for all the blogs that don't really fit in anywhere else. This was whittled down to 20 or so in the long list and there are now only five finalists. I'm up with four exceptional blogs:

Best Specialist Blog - Sponsored by iQ Content

Each category has five finalists this year and those I've had a look at are excellent since each blog is judged by about 7 people on merit not popularity. Some of my own favourites didn't make it to the final stage though...boo hoo.

The awards party takes place in Cork on Saturday night. I'm flying down on Friday and meeting my sister who is coming over from London. She'll make sure I behave myself when I'm let loose with no children for a couple of nights in an unfamiliar city. There will be much merriment and unlike last year, I will actually know some others there. I'm looking forward to it.