London Trip

A few weeks back, Gordon and I went to London for 2 nights while my dad and step-mum minded the children. Gordon was to be awarded Fellowship of the Royal College of Physicians; pretty impressive! We arrived on Monday afternoon and stayed in a nice hotel near the Natural History Museum, so obviously we went to see the dinosaurs. In the evening we met up with my sister and had a lovely evening chatting and having cocktails and noodles. The next day we walked around some of our old haunts, then along the river, stepping into the Tate for a while. It'd have been nice to see the Dali exhibition but having Dim Sum in the Harbour City took priority! Then we got dressed up and went to the award ceremony for an afternoon of pomp and splendour at the Royal College. It was a short and surprisingly (to me) interesting event. The president spoke to Gordon straight after, complimenting him on a talk of his he'd heard a few months back. (Look, I boast about the kids often enough, so just allow me this!)

That evening we ate in a super fine Indian restaurant in Knightsbridge called Amaya. We were seated close to the open kitchen, and saw the racks of kebabs and the variety of grills and ovens used. The food was lovely, and included the tastiest potato dish ever. The clientele looked like what used to be known an yuppies. Though to be honest, for a while there, I was one of those NIPPLES myself (New Irish Professional Person Living in England). Walking back to the hotel took us past the convoys of Lamborghinis that some of the ultra rich London dwellers seem to think of as the perfect city vehicle.

On our last morning in London, we dressed up again and went out to enjoy the highlight of our trip; lunch at the Restaurant Gordon Ramsey. This seemed to be a good spot for a celebratory meal. It was the most delicious meal I have ever eaten and we lingered for two hours. Forget FRCP, this was why we'd come to London!

We'd time to kill before heading out to the airport so we went to the Science Museum, still all dolled-up. I discovered I now have a much deeper appreciation for and understanding of, the steam engines on display, thanks to Duncan. We had a quick walk round the 'History of Medicine' display too. There was a bit written about fMRI and autism, including some typical misinformation about how those with the 'disorder' lack empathy, as well as something about developing cures. I should have photographed it. It's something I should investigate further, and perhaps some pressure could be put on them to change the wording.

We got home quite late and learned that the children had all been great. Lady had started summer scheme, Duncan and his Granda had spent a lovely long afternoon on the beach together, and they'd all been treated to trips to the park and ice-creams and the kind of loving attention only grandparents can give.

Cosmological Theory

Says Thomas, 'Mummy, I know what there is on top of space. There are loads of numbers. And after all the numbers, it's the Giant Causeway*. So you have, earth, space, numbers then the Giant Causeway.'

The Giant's Causeway, as it's more commonly known, is a dramatic collection of mostly hexagonal basalt columns on the north coast.

Stories and Speech

There's definitely an air of Harry Potter fever around here. I'm hoping it stays dry tonight as Lady and I are planning to queue up outside the bookshop at midnight to buy 'The Deathly Hallows'. We are very excited to see how it all ends, having enjoyed and discussed all the previous books in great detail. Lady has been telling me some of her latest theories, most of which involve Poly-juice potion. She's convinced Snape is evil, while I'm of the opposite opinion. Can't wait to find out! I'll read lots of it aloud tomorrow, so we can enjoy the story together. We all went to see the 'Order of the Phoenix' film the day after it was released. (We couldn't go on July 12th, since that other Order, the Order of the Orange, were having their wee walks around various towns and we just stayed at home well away from it all.) The film was great. We went to an early show and there were only a few others in the cinema with us.

As I write, Lady and Thomas are playing the HP PC game. Duncan has been customising his trains. He keeps painting them with the watercolours paints. He wanted the red trim at the bottom of each engine to be lighter, so he mixes a bit of red and white to make it just right.

One of his favourite toys these days, is a wipe clean drawing board, that scrolls between 4 screens, and allows for a short commentary on each screen. Duncan just uses it as a dictaphone. He keeps recording little songs or phrases and playing them back. It's hilarious! He has made the rest of us speak into it too, telling us what to say. Lady had to repeat the expression 'G for gow, G for gow, ow, ow.' What it means or where it came from, I've no idea. There's a song he sings, it's either, 'I'm a robber man' or 'I'm a rubber man'. But he shouts it really loud in this harsh rock star voice. As expected, there've been several word perfect recordings of classic Thomas The Tank Engine stories too.

Duncan's speech continues to improve. He now gives me more complicated instructions like, 'Put the 2 keys in the cupboard downstairs, now.' It's a far cry from when he was almost 3, and I got all excited because he looked at a plane flying overhead and muttered something which sounded like it may have been the word 'plane'. He only knew about 10 words when he was 3.

He's commenting on stories I'm reading. I was reading Snow White, and he kept looking at the picture of Snow White's mother, then one of the evil queen. After a lot of thought, he told me that 'the nice queen turned into nasty queen.' He got upset when I read about the woodcutter's instructions to kill the girl, saying 'no die! No Snow White die!' and was relieved when she got away safely. He tells the story back now, with a bit of prompting, and always emphasises that Snow White does NOT die.

Thomas was talking about something peculiar Duncan did, and said he was a bit like an alien. He didn't say it in a mean way at all. It seemed he was trying to find words to express the differences between Duncan and himself and other boys. I said, 'Duncan's not an alien. He's a boy like you. He's autistic and just does some things differently to you because of his autism.'
We'll just keep talking about these sorts of things as we go. There won't be any need for a big conversation, a big revealing of the family secret, because everyone is growing up knowing about and accepting of, autistic differences.

The Steam Train

On Sunday, (after I'd calmed down a bit, he he) we all got in the car and went to one of our favourite places, the Railway Museum. We rode in the steam train, and the children each bought a little gift in the shop. This shop is a Thomas the Tank Engine mecca.



It was nice, and Duncan loved watching the engine back onto the carriages and seeing the man couple them together. The best bit was when he was able to watch the driver shoveling coal on the fire. We rode the train twice, and the second time it was raining. We had no coats, but Duncan still wanted to watch the engine shifting from one end of the train to the other, so I had to stand in the rain with him. We were the only people out there!

Beautiful Words by Bullet

I read a beautiful post on the Autism Parents Forum by the woman who has become the heart of that growing group of people wanting to help their children, while loving them for who they are. I asked for, and was granted, permission to copy what she wrote here.

The poster known as Bullet wrote;

Do not tell me that you hope he will be cured, because then you will tell me he will lose his fantastic memory, the way he can whizz through a jigsaw puzzle after only just seeing it, the way he can recite whole poems and stories, even if he hasn't heard them in a while.

Do not tell me that he will grow out of it, because then he will lose the way he kisses with his forehead and plays with my hair and touches my face, not because he wants sweets, or to stay up for a bit longer, but because he loves me, nothing more complicated than that.

Do not say he cannot learn, because he perceives the world in a different way to you. See him remember places he's not been to in months and watch him read numbers, know colours, shapes and letters and then dare to say he cannot learn, because he can't ask for a drink.

Do not demand vocalised speech for him as the be all and end all, let it be his choice and give him other options. Do not presume that silence means compliance, that a failure to say if something is wrong means that everything is right. Let him sign, draw, write, talk, whatever he needs to get his point across and never, ever belittle him for not opening his mouth, or for opening his mouth and communicating in a way that may seem strange to you.

Do not presume to think his worth can be measured on how social he is, how much peer pressure he succumbs to as he gets older, how much he is able to network. As he grows, let his worth be measured on the respect he gives others, on his sense of justice and mercy, on his willingness to help those in need if he is capable of that help.

Do not take my smart, funny, affectionate little boy and try and mould him into your rigidly defined views of what is socially acceptable. Let him learn, let him develop and let him understand that his value in the world is as equal as yours.

Autism and the MMR; bovine excrement.

I am riled. Yesterday, I was having a nice morning, espresso and chocolate croissants for breakfast, chatting with Gordon about stuff. He started to read The Observer online and shared the top story with me; New health fears over big surge in autism.

I initially wondered what the new 'health fear' was. Had someone identified a link between autism and some illness or other? As we read, it became clear that autism was the health problem.

The article subtitle sets the agenda right away;

· Experts 'concerned' by dramatic rise
· Questions over triple jab for children

It was to be an MMR story. I was fully expecting the testimony from the USA vaccine litigation to be revealed, since it's so recent and so relevant. The expert testimony of Dr Stephen Bustin (blogged so well by Autism Diva), destroyed the credibility of those claiming to link MMR to autism, via the 'evidence' of measles virus in the tested children's guts. Dr Bustin examined the lab responsible for analysing the samples, and was able to prove that they had only ever detected false positives. There was no evidence of measles in any of the samples, whatsoever.

Also in the same trial, the evidence of Dr Nicholas Chadwick, showed just how far Wakefield went to misrepresent and just plain lie about his data. Dr Chadwick worked at the Royal Free with Wakefield, and analysed the samples taken from the poor autistic children. (Don't forget, these samples were from gut biopsies taken under general anaesthetic, and from lumbar punctures; how the hell did Wakefield get ethical approval for that?)

At the trial, Chadwick testified as follows;

Q. So you personally tested while you were in Dr. Wakefield's lab gut biopsy material, CSF and PBMCs?

A. Yes, that's right.

Q. And all the results were either negative, or if they were positive it always turned out that they were false positives?

A. Yes, that's correct.

Q. Did you inform Dr. Wakefield of the negative results?

A. Yes. Yes.

I assumed the journalist, Mr Campbell, would have done at the very least a quick Google news search that would have pointed to some of the recent articles on the issue, like Dr Michael Fitzpatrick's article,‘The MMR-autism theory? There's nothing in it.’ which tells how Dr Bustin has been prevented by the failed but drawn out UK MMR litigation, from making public his findings on the lack of measles in all the samples.

Clearly, this was all too difficult for Mr Campbell.

So on to the article.

The number of children in Britain with autism is far higher than previously thought, according to dramatic new evidence by the country's leading experts in the field.

A study, as yet unpublished, shows that as many as one in 58 children may have some form of the condition, a lifelong disability that leads to many sufferers becoming isolated because they have trouble making friends and often display obsessional behaviour.

This is rubbish. Firstly, the study is unpublished. Next, as Public Address has pointed out, it refers to a screening questionnaire called the CAST (Childhood Asperger Syndrome Test), a tool designed not to diagnose autism, but to flag up children who may turn out to be autistic. So to have screaming headlines about 1 in 58 children having autism, is just plain dumb.

I'd also take issue with the claim that this study was performed by the UK's leading autism authorities. And could journalists please stop calling people with certain conditions 'sufferers' as it really annoys them!

Seven academics at Cambridge University, six of them from its renowned Autism Research Centre, undertook the research by studying children at local primary schools. Two of the academics, leaders in their field, privately believe that the surprisingly high figure may be linked to the use of the controversial MMR vaccine. That view is rejected by the rest of the team, including its leader, the renowned autism expert, Professor Simon Baron-Cohen.

So here we have the MMR link. The study mentioned had absolutely nothing to do with MMR, but Mr Campbell manages to shoehorn it into the article all the same. What marvelous journalism.

The two 'experts' mentioned who privately believe that autism is linked to the MMR (but not all that privately, or we wouldn't be reading about it in a major broadsheet) were both paid large sums by the claimants in the failed UK MMR litigation. They are Dr Fiona Scott and Dr Carol Stott. Guess who Dr Stott now works for, oh yeah, Andrew Wakefield, in his Texas autism treatment shop, where he charges vulnerable and gullible parents loads of money for non-proven 'therapies'. For a fun bit of background reading on Stott, read Bad Science, where it's also revealed that Dr Scott is not happy about the leak.

Later (much later, you'd almost think it's been given less prominence on purpose) in the article we read;

...

Professor Baron-Cohen, director of the centre and the country's foremost authority on the condition, said he did not believe there was any link between the three-in-one vaccination and autism. Genetics, better recognition of the condition, environmental factors such as chemicals and children's exposure to hormones in the womb, especially testosterone, were more likely to be the cause, he commented. 'As for MMR, at this point one can conclude that evidence does not support the idea that the MMR causes autism.'

The other thing that is not discussed, is how the uptake of MMR is falling, while the numbers of children diagnosed with autism continues to rise. So how is there a link?

Then we get a potted history of the MMR story, and the line, 'The medical and scientific establishment denied Wakefield's claim, described research he had co-authored as 'bad science', and sought to reassure the public, with limited success. ' Why are there quotation marks around the words bad science? It was bad science!

It all becomes clear. This is a propaganda piece, designed to make people think that there is some sort of autism MMR link, just in time for Andrew Wakefield's GMC disciplinary hearing later this month.

Wakefield and two former Royal Free colleagues are due to appear before the General Medical Council next week to answer charges relating to the 1998 research. The trio could be struck off.

With any luck they will be struck off. The article also advertises a book due to be released by a GP who is cashing in on the unfounded parental fears of MMR by selling single jabs. Perhaps he's the journalist's cousin or something and he wants to give him a wee leg up.

A book to be published this month by Dr Richard Halvorsen, a London GP who provides single vaccines privately to babies of parents concerned about MMR, will fuel the controversy. It will present new evidence of children allegedly being damaged by vaccinations and linking increased autism to MMR.

It all ends with some good advice, tucked right in at the end;

But Dr David Salisbury, national director for vaccines and immunisation at the Department of Health, said last night: 'The evidence is absolutely clear. No published study has ever shown a link between autism and the MMR vaccine. It is absolute nonsense to suggest otherwise.'

Hear hear Dr Salisbury.

Mr Campbell writes a loving and respectful piece on Wakefield in the same paper, giving the disgraced doc loads of column inches to defend himself. It's entitled, 'I told the truth all along, says doctor at heart of autism row.'

Of course you did Andy. That's why the GMC are investigating the following allegations (quotes below from GMC documents);

It is alleged that the three practitioners were named as Responsible Consultants on an application made to the Ethical Practices Committee of the Royal Free Hospital NHS Trust (“the ethics committee”) in 1996 to undertake a research study involving children who suffered from gastrointestinal symptoms and a rare behavioural condition called disintegrative disorder. The title of the study was “A new paediatric syndrome: enteritis and disintegrative disorder following measles/rubella vaccination”. The Panel will inquire into allegations that the three practitioners undertook research during the period 1996-98 without proper ethical approval, failed to conduct the research in accordance with the application submitted to the ethics committee, and failed to treat the children admitted into the study in accordance with the terms of the approval given by the ethics committee. For example, it will be alleged that some of the children did not qualify for the study on the basis of their behavioural symptoms.

It is further alleged that the three practitioners permitted a programme of investigations to be carried out on a number of children as part of the research study, some of which were not clinically indicated when the Ethics Committee had been assured that they were all clinically indicated. These investigations included colonoscopies and lumbar punctures. It is alleged that the performance of these investigations was contrary to the clinical interests of the children.

Oh, so that's how they managed the issue of ethical consent for dangerous, painful and invasive procedures on small children.
The list of wrong doing continues;

The research undertaken by the three practitioners was subsequently written up in a paper published in the Lancet in February 1998 entitled “Ileal-Lymphoid-Nodular Hyperplasia, Non-Specific Colitis and Pervasive Developmental Disorder in Children” (“the Lancet paper”).

It is alleged that the three practitioners inaccurately stated in the Lancet paper that the investigations reported in it were approved by the ethics committee.

The Panel will inquire into allegations that Dr Wakefield and Professor Walker-Smith acted dishonestly and irresponsibly in failing to disclose in the Lancet paper the method by which they recruited patients for inclusion in the research which resulted in a misleading description of the patient population in the Lancet paper. It is further alleged that Dr Wakefield gave a dishonest description of the patient population to the Medical Research Council.

The Panel will inquire into allegations that Dr Wakefield and Professor Walker-Smith administered a purportedly therapeutic substance to a child for experimental reasons prior to obtaining information about the safety of the substance. It is alleged that such actions were irresponsible and contrary to the clinical interests of the child.
The Panel will inquire into allegations that Dr Wakefield was involved in advising solicitors acting for persons alleged to have suffered harm by the administration of the MMR vaccine. It is alleged that Dr Wakefield’s conduct in relation to research funds obtained from the Legal Aid Board (“LAB”) was dishonest and misleading. It will be alleged that Dr Wakefield ought to have disclosed his funding from the LAB to the Ethics Committee but did not.

The Panel will inquire into allegations that Dr Wakefield ordered investigations on some children as part of the research carried out at the Royal Free Hospital from 1996-98 without the requisite paediatric qualifications to do so and in contravention of his Honorary Consultant appointment.

The Panel will inquire into allegations that Dr Wakefield failed to disclose his involvement in the MMR litigation, his receipt of funding from the LAB and his involvement in a Patent relating to a new vaccine to the Editor of the Lancet which was contrary to his duties as a senior author of the Lancet paper.

The Panel will inquire into allegations that Dr Wakefield acted unethically and abused his position of trust as a medical practitioner by taking blood from children at a birthday party to use for research purposes without ethics committee approval, in an inappropriate social setting, and whilst offering financial inducement.

Those are some serious allegations. This little ploy of redirection and resurrection of the stinky cadaver of MMR-autism causation, is not going to detract from the GMC investigation.

I hope the originator of all this gets what he deserves.

Minerals and Mountains (and my Birthday)

It was my birthday on Monday. Gordon booked a night in the Slieve Donard hotel in Newcastle, and arranged for my dad and step-mum to come and babysit. We had such a nice time. We were away for just over 24 hours, but it was a wonderful break. The hotel was beautiful and our room (paid for with Tesco vouchers, yippee!) had views of the sea and the Mourne Mountains from all 5 windows.

Dinner in the hotel wasn't great; not what we'd expected. Breakfast was perfect though. If there was a world contest to see what country made the best traditional breakfast, Ireland would definitely win!

We spent time in the health spa (why's it called a spa?) on both days. There was a 20m pool with huge windows along one side, with views of the mountains sweeping down to the bay. It was all so luxurious.

I didn't bother with any of the 'treatments' though. I'm far too tight for one thing, but for another, it's such nonsense. Me and Gordon were cracking up, when I was reading the leaflet in our room, describing the 'Hot Stone Therapy'.

Hot Stone therapy has been used for thousands of years for harmonising, cleansing and relaxing the body at its deepest level. Volcanic in origin, Basalt lava stones are rich in minerals and can be heated and used for deep body massage and intensive energy work. They may be placed on specific energy points or Chakras to help the body clear blocked energy centres and help relax and dissolve stress, drawing excess hyper-energy away from over-stimulated areas, bringing new energy to depleted zones. Different mineralogy in cold stones may bring a cooling, clearing effect when placed on the eyelids.

Isn't that fantastical? Rich in minerals eh? Minerals must be good. But isn't arsenic a mineral? And what are the benefits, how are they absorbed? And how do you relax at 'the deepest level' and my favourite bit of all, the new physics described, whereby 'hyper-energy is drawn away from from over-stimulated areas, bringing new energy to depleted zones.'

But anyway, we loved the place. After checking out, we drove around the mountain roads, stopping off for a peaceful walk in the Silent Valley. It was a special birthday, and the best thing about it was the company. We arrived home just after 5, with a little gift for the children who had, as always, enjoyed their time with their grandparents. They'd been to the park and had ice-creams and everything! Also, my dad had mowed our seriously overgrown garden, he's such a good Daddy!

Stuff from the week

Last Friday, I went to my cousin's wedding. Gordon wasn't able to go with me; work commitments. Instead I travelled across to the west with my dad and step-mum. Gordon's mum came to our house to mind the children for a few hours, and then M. (our NAS befriender friend) came over to stay until Gordon got home. Both baby sitters said the children were no trouble at all. Phew!

I had a lovely day. My little cousin was looking utterly beautiful, as all brides must! It rained all day, but she never stopped grinning, and was a like a wee ray of sunshine all day. In between the service and the reception, we went to a cafe for a snack; my belly had been rumbling throughout the service, bloody embarrassing! Then we visited my 95 year old granny, whom I haven't seen for far too long. She was on great form too.

The reception was terrific. We shared a table with one of my aunties and a few cousins and their spouses. One cousin had just had a baby so I enjoyed a few cuddles. Actually, whenever we all get together, it seems that someone has always just had a baby or is about to get married. I suppose it goes with having a large family. As always at these things, I enjoyed the crack, chatting and catching up and reminiscing about good times and also the hard times we've shared. The bride's father, my uncle, had died when she was only 8, in a work place accident, leaving her mother to raise 4 young children alone. Her eldest brother walked her up the aisle, and later gave a short, moving speech, though he was obviously nervous.

And then we danced! Nothing beats the dancing at a wedding!

Sunday was Father's day and Lady had made a cool card. She drew a picture of her dad with a big head and a tiny body topped by a light bulb in a thought cloud. On the back she drew another version of Gordon, with a speech bubble and the words "BAX...BAT...apoptosis...mitochondria" (words he uses often at work) which went down very well!

Since then, it's just been same as usual round here. Lady has been reading about the Greek Myths, and started to write and illustrate a few of her own short stories such as;

The Magic Eye
One day the king Eurystheus saw that he was getting old. He wanted to see his grandchildren but he couldn't see them if he was dead. The king had a daughter called Aneena. She was beautiful, but she didn't want to give birth. She liked the palace and she did not want to get married. This made the king cross. So one day the king put Aneena in a box and sent her away.
THE END

I asked her if she thought she'd get married, she said she might but not 'till she's much older. She wanted to travel around the world and go diving and go to the Great Wall of China, like her aunt C!

Thomas and I were talking about letters and their sounds. I asked him if he could think of any words starting with the letter 'P' and he said 'pee, like you do in the toilet' so I agreed, that was one such word. Then he thought on and said, 'pee, like what goes under your bed'. I didn't understand this one, so he pointed to the mattress (we were in my room). I said 'that's called a mattress.' He said, ' I mean the thing that goes under it, and the loads of mattresses go on top, and then the princess has to climb up the ladder to go to bed'. Ah, pea...how was I missing what should have been so obvious!

We also had a very interesting talk about evolution, when he asked me about dinosaurs being the scariest animals and I told him that people were never on the earth at the same time as dinosaurs. He asked me who made the first people. He liked the ape story!

Thomas has worn his dad's stripy tie every day this week. He now ties it himself, wrapping it round many times so it resembles a cravat. Lady was worn a red silk scarf on her hair, topped with a pick woolly hat. She likes the way it makes her look like she has long red hair. No uniforms here!

Duncan is going through a major Thomas the Tank phase again. I investigated the lead paint on engines toy recall, but none of those we have are affected, thank goodness. He and Thomas have spent hours each day setting up the 3 different types of track and telling stories.

Duncan also lost his 2 bottom front teeth, and was pleased to receive money from the tooth fairy, which was exchanged for, well guess what, a 'Shiny Sir Handel' train.

Autistic Pride Day

Today, June 18th is Autistic Pride Day.

Autistics Speak. It's time to listen

so have a look through some of the links on the right, especially 'The Best in Autism Writing'.

And have a nice day!

Parenting is Not So Easy

Mom26children has a post which got me thinking.

When I introduce my children, I do not introduce them as Autistic children.
My children are individuals who happen to be autistic. I am lucky, they do not
misbehave in public..they learned very early that they would be removed from
situations if they could not behave appropriately in public.
Even Caitlin and Kiernan know this.

Just because you have an Autistic child does not give them free reign to disturb others in a public situation. If that was the case, we could allow any person to disrupt any situation.
If you want your Autistic children to be taken seriously, you must take your Autistic child seriously.

How can we prepare our Autistic children for their future and being accepted by society if we allow them, as children, to act inappropriately in public?

Just because your child was given the diagnosis of Autism does not mean you have to stop parenting your child....

I agree that you have to keep parenting the child. I don't agree that I cannot allow him to act inappropriately in public. Not if acting appropriately means emulating what would be expected from a typically developing child.

My son often behaves in ways that would be described as 'bad'. I don't doubt that his behaviour disturbs other people too. For example, last week I took the children to the zoo and met with several other home-educating families. Duncan wanted to sit in his Major buggy (large pushchair thing) which is good because it gives him somewhere to go and hide under a coat when he wants some peace.

We passed the playground and most of the children went on the equipment. Duncan sat in his buggy for about 10 minutes watching them, though I asked him a few times if he wanted to play. Suddenly he jumped out and climbed the steps of the popular and crowded climbing frame/slide. He screeched happily as he went. When he came down the slide, he didn't want to get off. He wanted to climb up the slide. I told him that children were coming down, climb up the steps. He refused and started to cry hard. I had to hold him to stop him from climbing up while the others were coming down. I tried to comfort him, telling him we'd see the animals. He just got into a major state. It was unexpected. He screamed and thrashed. He hit at me, though as always he held back from actually hurting me. It would have looked bad though. I sat on the ground beside him for about 15 minutes while he got settled again. The place was packed with school groups and loads of little kids were staring at us. The teachers were staring too, but more discreetly.

See, he kicks off some times. He tantrums or makes noise or flails his arms around. It looks bad. Gordon gets really upset when this happens in public, but I don't. I'm getting better at helping him, he's getting better at calming down. People can stare and tut and whatever all they like. I don't have the same expectation of him as I do of his non-autistic siblings. I would be horrified if either of them had a outburst like he does sometimes.

This is part of his autism. It's part of his developmental disability. If he were unable to walk, I wouldn't expect him to run. If he were blind, I wouldn't expect him to see. He's still learning the skills to regulate his behaviour. He gets overwhelmed. He can't explain what it is that is upsetting him, or what it is he wants. It feels to him that his world is falling apart.

While he was upset last week, I was trying some of the stuff that I've said before to help him. I empathised with his mood, told him that I knew he was angry. I told him I would help him. I tried to playfully ask him to 'take the grump out and throw it away' (it helps sometimes!) but he wanted to be angry. What eventually helped was my telling him that he is angry today, he will be happy tomorrow. He often refers to any time in the future as 'tomorrow'. That seemed to make him realise that this feeling would go away.

I seriously considered dragging all the children back to the car and home. Is that what is meant by removing them from the situation?
But that would have been unnecessary and Duncan wouldn't have learned anything from it. I have cut events short before, but it wasn't warranted then.

Afterwards, the day was lovely and we all had a fantastic time.

I find it hard to parent Duncan at times, harder than with his siblings. It's not impossible though. It just doesn't come so easily to me. I'm definitely on a learning journey. We both are.

8 things about me

I was tagged by EF and Allie to list 8 facts/habits about myself.

What kind of things shall I write about? I'm not such an interesting a person! Ah well, if you read this, and it bores you, too bad.

1. When I was 7 and making my first communion, I wanted to be a nun like my teacher.
2. When I was 33 or so, I came to accept that I just don't believe in god any more. (I blame Bertrand Russell.)
3. I clean our toilet about 4 times a day. It comes from having little boys with imperfect aim.
4. I like things to be clean, but am not too worried by mess, well as long as it's not out of control.
5. As a child, I lived in the countryside, surrounded by fields and cows. I used to like singing to the cows. They'd always walk to the gate to look at me, weird thing that I must have appeared.
6. When I was 7, my nun teacher used to frequently tell me off for walking around with my hands in my pockets. She said I'd get badly hurt if I fell over.
7. I'm doing the best job in the world right now. My co-workers are wonderful people. The pay sucks though.
8. I have a very big family. I have 5 siblings and both my parents came from large families. Unusually for Irish families, non of their siblings left the country, so I grew up with bucket loads of aunts, uncles and cousins.

Any one who wants to do this, consider yourself tagged.

Making Friends

Yesterday, we visited some home-educating friends for the first time at their house. Their home is big and beautiful, and they don't have a garden; they have grounds! Lady paired up with E, and they spent the day exploring, walking in the rain, riding bikes, practising high jumps, learning magic tricks, inventing spells, catching a frog (they released the creature again right away) and talking, talking, talking!

Thomas spent his time with J, and they walked round with their heads bent, and their brows furrowed and discussed stuff. Thomas had taken his Harry Potter robe/Doctor Who coat and his sonic screwdriver (well, what kind of Time Lord travels without one).

Duncan found a selection of Thomas the Tank Ladybird books. They were tightly packed in a large book case with only the spines on view so it was obvious they were there, right! He also managed to find a few chocolate sweets in a high corner cupboard in the kitchen, that S didn't even remember they had. But you know how some shark species can taste one molecule of blood in a million molecules of water, it appears that Duncan has instead, some enhanced sugar detection system.
He liked their rocking horse, and J's toy monkeys and Warhammer figures. He spent most of his time siting in the middle of J's toy castle, looking at Thomas books and eating crisps.

We had a really nice time. Unfortunately Duncan did manage to break a model of a barge E had made and a guitar string and...well something else no doubt :-(
The only way to ensure he doesn't cause any damage, however inadvertently, is for me to stay right with him all the time. And I was having a nice chat myself and many cups of tea.

When we went home, E asked Lady to stay for another while, and S agreed to drop her off home later. I think it's the beginning of a beautiful friendship!

Duncan is 7!

It's Duncan's 7th birthday, though he insists he is still 6. He's had a nice day. His Granda came around yesterday with a present; a Brio train set, with a level crossing! He set it up immediately and played with cars crossing the tracks.

Late in the afternoon, the whole family took him to his favourite toy shop so he could choose his gift. He picked a fancy station for his 'noisy trains'. He and Thomas played with it for hours when they got home.

When I'd asked him last week what he wanted for his birthday present, he said,'Percy runs away, Ladybird book. Henry stuck in the tunnel, Ladybird book.' So I ordered them from Amazon and hid them in my room. I gave them to him this morning, still in the brown padded envelope, which I know is much more exciting to him than wrapping paper. He was delighted with his books and I had to read the oh so familiar story of Percy the cheeky engine, right away.

It was warm and sunny today, and the paddling pool was out. The children from next door came round, and Gordon's mum joined us in the afternoon. I'd made a chocolate cake, and decorated it with an icing train track, then stuck his toy Percy on top, and jutting into a pile of the chocolate icing. This was to recreate the scene in 'Percy Runs Away' when Percy runs into a bank of earth. Duncan thought this was marvellous. We all sang happy birthday, he sang loudest of all, but covered his ears all the same!

Gordon wanted to take his photo, and Duncan negotiated with him, agreeing to pose only if he could also hold his new Ladybird book. So the first few photos were of the book covering his face, then he lowered it for, what I'm sure you'll agree, is a very lovely birthday photo!

He's my gorgeous boy, and I love him so much.

These days, Duncan is mostly singing;

Bad boys, bad boys, what you gonna do, when they come for you...

He's a tramp, but I love him, breaks a new heart every day...

Accidents happen, now and again, ba, ba to the end...

A cake-y cake-y a fav-ot shoe (oh yeah!)...
(It's the advertisement jingle for pretty but pricey, Lelli Kelly shoes for girls).

We stand, shoulder to shoulder...

Life must be good, when there's a song for every occasion.

Many children came

I watched a documentary on Monday called 'and many children came' about the local Camphill Community. The film's director wrote about the programme in the Belfast Telegraph; 'Ulster community which truly loves its neighbour'. He says;

... it was by accident that I discovered the Camphill Community at Glencraig and found out that nearly 200 people live there on about 100 acres. They have a school and a farm, grow vegetables organically and are more than 60% self sufficient. Glencraig had been set up in 1954 as a place where children with special needs could be educated and looked after. Today, it is a community that has grown to include all ages.

I live fairly close to Glencraig, and I knew it contained a school where most of the children were autistic. So 2 years ago, I went to look around the place on its open day. I had not realised that the children live at the school. Obviously, that alone meant there was no way Duncan would be going there. But the ethos of the place did not appeal either. It was all very nice, the staff seemed kind, the farm was well tended and impressive, the building's colours were muted and calm and there were wax pictures and candles and handwoven rugs in abundance. There were teachers who also had roles as house parents, as the children and adult residents lived on-site in homes of about 15 people, together with the co-workers; mostly students on a gap-year after leaving school. But where were the computers, the augmentative communication devices? How free were the residents to come and go as they pleased? Were they really helping each person develop to the best they could be? How did the children cope without their parents? The article continues;

I later discovered that Glencraig is a place where some very precious words are never preached, but practised every day: 'Love thy neighbour as thyself'. And it was only later that I got the opportunity to make a film about Glencraig, a film that might also prompt us to look at the way we live our lives.

There is no doubt it is a nice place and the people choosing to work there want to help others and create a peaceful environment. Several of the staff spoke of how they were a community, how they learned as much from the residents as they taught them. I may be overly cynical, but was it more than platitudes? I wonder if there is still bullying, if some residents are miserable. Is any place free from such problems? Do the staff have any concept of the advocacy movements by people with Down Syndrome and autism? Are they interested? They said that everyone has a say, but can the residents make decisions about anything more important than what to have for dinner? One of the staff describes how they assign tasks so everyone has a role to play;

"If someone is autistic and can only push a wheelbarrow that's OK," said Paul. "We need someone to push a wheelbarrow. Someone else can pick the peas. Someone else can pack and process them."

While watching the film, they showed a young blind woman. A co-worker told talked about this woman's role in the laundry, where she does no work, but brings cheer and light to the room. The same woman was shown playing music (a lute, I think) beautifully, with deep concentration and skill. I wondered, (accepting that I don't know anything about her beyond the short amount shown), how in a place that values the work of each person, they couldn't find a more active role for this woman. The article finishes;

Another truth was that in a world that has mostly lost its relationship with the earth there was a huge respect for it and for the rhythms of the day and of the year. The seasons were very important at Glencraig and the life of the community revolved round them and were cherished and celebrated. And then there was the truth of the light. The candle. A simple symbol that the founder of Camphill, Dr Karl Konig, loved. It was hard not to notice the candles at Glencraig, especially at festival times, gentle and tender and bright and everywhere. "We do not label people," said John. "Labelling people diminishes us. Everyone is equal here. Everyone is special. There is a light inside every human being."

I wondered if all the residents enjoy all the ceremonies, the candles and singing and joining of hands on the lawn. Were all the autistic residents really happy with that? I also disagree with the idea that a label diminishes anyone. Autism, is not an add-on, but an integral part of a person. Duncan's autism is a part of him and how he perceives and interacts with the world. To ignore his autism would not help him. I'm not at all sure that I'm being fair here. I hope that everyone at Glencraig is truly happy, fulfilled and cherished. It is a lot better than many of the alternatives, and without it, the residents might well be much worse off. But it did come across to me as a nice, Steiner-y prison.

The Joys of June

It's been a while since I last posted. I've been busy, and did much reading and thinking over the weekend.

However, life has gone on and there are several things I want to make note of before I forget them. Like, our trip to the playground last Thursday, when we met up with a gang of other home-educating families, with some old friends and some new ones. It was wet and often cold, but the children still had fun. Lady has at last mastered the art of swinging, and she played most of the time with another 8 year old girl whom she really likes. Thomas paired up with his best buddy, and I rarely spoke to him for the few hours we were there. He was much too busy playing! Duncan enjoyed it too, although he did keep running to the exit at first, saying he wanted to go to McDonald's (we'd passed one on the way there). Eventually he got into the swing of it too, climbing and sliding and having a grand old time. He was on great form, and although I stayed close and kept a careful watch on him, I rarely had to intervene. He did catch me out somewhat when he slid down the slide, ran to the grass verge, and stood to pee. But it was a heck of a lot more socially acceptable than doing it while up the climbing frame! Also, once he approached a man who was holding his daughter's toy Woody (from Toy Story) and was reaching out to touch the toy. I told him it was the little girl's toy, and he left it at that. I explained to the man that Duncan is autistic; he smiled and was perfectly nice. Our friends came to the house after and the children continued to play while we had tea and a chat and warmed up again!

In the evening I was reading to Thomas, a story about a dog taking another dog's bone. I asked him what it's called when someone takes what isn't theirs, he said 'it's called, rude!' Fair enough!

Duncan has continued to draw loads. I took photos of all his most recent art works. I like to see the progression in his ability. I've put them on Flickr here (they're public).

Lady has been marvellous lately. I am so proud of that girl. It's so nice to have an 8 year old daughter about the house, especially when she can make a fine cup of tea! Earlier she showed me a marvellous Superman story she's written. As she was leaving, I asked her for a hug and told her how much I love her and that she is a bright light in my life. She said, 'Thanks! But so is Duncan and so is Thomas!' She always wants to have them included too. So much for the 'poor damaged sibling of the disabled child' theory.

On Friday night, Gordon's Mum babysat again. She is such a star! We went to a dinner dance, (or ball, if you're feeling posh.) I got the tickets from a woman who goes to salsa class with me, and proceeds from the evening were going to the charity that pays for Gordon's research. We had such a good night out. The food was terrible and the wine was rough, but that was not why we were there. (And also, we are both far too fussy these days! I've been spoiled by Gordon's good cooking.) But there was a live, 2-man band, playing fun, wedding-type music, and we chatted and danced, and I even did a little bit of salsa. Though, I now realise that strappy sandals are not best suited for this.

Duncan was enjoying the Pixar site today, especially the short film Knick Knack. He's been singing the Bobby McFerrin music from that film for the past few days, and we've all joined in.
He sings, 'do-be-de do-be do-be do-be-de,' and we go 'wa-wa, wa-wa wa wa-wa-wa-wa.' I'm sure you get it!