31 Jan 2008

Daniel Isn't Talking

I happened to pick this up in the local library. 'Daniel Isn't Talking' by Marti Leimbach, is a mother's story. It features the typical account of the mum, this time an American in England, sensing something about her child just isn't quite right, followed by the quest to gain a diagnosis and explanation from a cold and unfeeling medical profession. Even worse, her husband and her hostile mother-in-law are adamant there is nothing amiss with the child saying the mum is worrying unnecessarily.

So anyway, I'm just going to go ahead and reveal the plot of the book, because to be honest, it's not exactly a page turner, and I wasn't enamoured of the whiny Melanie, nor convinced by the astonishing, no, miraculous intervention of the handsome rascal, Oirish therapist, of whom she has to say, 'He makes me laugh and he fixes my kid.' This roll-up-smoking, sexy maverick falls for the mum; ethical qualms about sleeping with your client's mother be damned. Anyway, he's presented as a far better catch for her than the uptight, cheating Brit she's married. That's the gist of it anyway.

So what about the depictions of autism and disability in this novel? Well they pissed me right off. The author has every right to create her character and make her think and say what she wants, but I'm also entitled to react as I see fit, and I didn't like it...with one exception.

Chapter 5 starts, "Do everything you can in life to avoid ever visiting a developmental paediatrician, especially one in the NHS."
She then tells of the unattractive car park, the imperfect decor of the hospital, and even worse the "posters about various conditions - dyslexia, Down's syndrome, schizophrenia - until you enter playrooms full of badly damaged children. These children do not often smile, cannot easily speak, play not with each other but with objects that are not toys." (my emphasis)

In chapter 7, she visits "a supposed centre of excellence for autistic children" and is asked if she wants her son enrolled in their programme. The readers have just been given a precis of the flawed theories of Bruno Bettleheim, and the programme in question uses psychotherapy, so is obviously useless to her, and brave Melanie tells the smug shrinks just that. I wonder why she bothered meeting them in the first place. Later she writes a letter to Bettleheim; "I didn't know I could love so much as I have loved my son, my daughter. Why do you insist this isn't the case? Why do you openly despise me, despise all mothers of children with autism?
I would give my life publicly if I thought I could lift from my baby this appalling diagnosis. If it were that he could be normal - just ordinary like other children - I would climb the scaffold myself..." (my emphasis)
Not that Bruno will ever know her thoughts, him being dead and all.

There are many references to the role of vaccines in this novel. Melanie feels guilty for having vaccinated her son and is convinced it contributed to his autism. But, it's a work of fiction, and she can invent causes of autism if she wants. If I was the author, I'd have had my character worrying about eating grapes in pregnancy or some other random and non-related event. (I recently read online somewhere, some tool's theory that children who watch cartoons are made autistic!)

One of the silliest parts of the novel, if we are to think this is based on what might happen in a real life situation, is the meeting between Melanie and a speech therapist. The speech therapist says all sorts of daft things like, "If I were you, however, I'd be thinking about special school and about respite care. You really have no choice." (my emphasis)
I just couldn't imagine any SALT worth their salt (I know, that was pathetic, but I'm not a writer) even saying that. But it gets worse:

"I'm telling you for a fact this is a big one, autism. Regular speech therapists like me can't even touch it.
I'm not qualified to treat this kind of thing."

This speech therapist, we are led to believe, has no advice or recommendations to give the mum. Nothing.

This is just bollox.

I know it's a work of fiction, and set in a parallel world where it is likely that vaccinations cause autism, so it's just as likely in such a world that a SALT would have zero advice for the parent of a non-verbal 3 year-old beyond 'put him in a special school.'

But the speech therapist is really just a plot device to introduce us to the lovable Irish rogue and ABA therapist, Andy. He's going to draw Daniel out of his autistic state and fall for his mother. He's expensive, but he's worth it.

Melanie says, "Autism turns out to be an expensive condition. That is, if you treat it."

But what is it she's paying for; ABA therapist, a therapist for herself, a cleaner, bills for private doctors, homeopaths, kinesiologists craniosacral therapists, oh and gluten and casein are excluded from Daniel's diet. Obviously. The only thing in that list of any proven benefit, is a cleaner. Thankfully Melanie can raise cash to waste by selling some of their stuff and she happens to have a spare country cottage.

The book is set in England where the NHS provides free health care so why is she forking out for doctors? There are also free schools and nurseries for those who want them and disability benefits are available though the claims procedure is a nightmare.

At least Melanie did buy Daniel the 'girl's' buckle shoes he wanted, though the dragon-lady sales assistant was over-done.

So I didn't like this book, didn't like how autism is portrayed, the 'devastation rhetoric' used, the disablist language, the improbable love story, the way it's assumed that autism is not just an evil thief of innocent children, but an expensive one at that.

Wouldn't it be nice if there was a book where the child happened to be autistic, which caused challenges and meant that the family had to make choices they might not otherwise have made, but where there was fun and silliness, where education and parenting are deemed all that are necessary to ensure the autistic child's optimal development and where expensive unproven quack therapies are scoffed at, not embraced.

There's a line in the book; "Other people don't have children with autism. They're not entitled to have an opinion."

Well I do, and I am.

The Speed of Dark

Last autumn, I read 'The Speed of Dark' by Elizabeth Moon, and just last week, I borrowed 'Daniel Isn't Talking' by Marti Leimbach. Both are works of fiction with an autistic character, but they are very different in style and tone, and I much preferred the former novel.

'The Speed of Dark' is set in the near future, and all genetic disorders are prevented or cured in early childhood. (This fictional future is like the realisation of all the fondest dreams of the wealthy organisation, Autism Speaks. Its co-founder Suzanne Wright has said she hopes for a future when autism is merely "a word for the history books."
(link: www.autismspeaks.org/sponsoredevents/new_decade_for_autism.php)
In a recent interview she said, "we try to stem the tide and ultimately eradicate autism for the sake of future generations. If we continue our current trajectory, we’ll get there in my lifetime." That'd be about 20 years from now.)

Our protagonist, Lou, is a young autistic man, born just too early to be cured of his autism so he and his work colleagues are among the last generation of autistic people alive. He underwent intensive training as a child to help him conform as much as possible to the non-autistic majority. He works for a pharmaceutical company, in a small section where all the employees are autistic, and where their autistic strengths, like pattern recognition and attention to detail, are used to benefit the company. A few work place accommodations including a trampoline in a recreation room and allocated parking spaces, help to keep these competent employees content and productive. However, the company is promoting a novel treatment for autism and is pressuring their autistic employees to opt for the surgery.

I enjoyed the insight into Lou's inner life, his friendships, enemies and interests. I cared about this character, though I didn't find some of the other characters so convincing, especially those depicted as all good or thoroughly rotten. The ending (and this is a bit of a spoiler) was horrific and chilling, to me anyway. It jolted with the rest of the book, but that may have been the author's aim. It certainly was not what I expected, and I found it just so upsetting. Others may differ and consider what was depicted as the best possible outcome.

30 Jan 2008

Anxious days

We headed off to W5 (cool science play and exploration place) yesterday with a few other HE families. The children enjoyed their day out. Thomas was so excited when he woke, wanting to leave immediately to see his best friend J. whom we haven't seen for a while. While there, I stayed by Duncan as he explored where and when he wanted, while Thomas and Lady hung out with their friends and the other families. Occasionally our paths crossed. Duncan enjoyed filming himself in front projected images of a hurricane or volcano. Mostly, he pretended to be flung around by the 'wind' but he kept breaking into song; Kooks by David Bowie, as heard on his picture video. He doesn't get the pronunciation quite right, but what he's singing is instantly recognisable. He particularly likes the lines,

'And if you ever have to go to school,
Remember how they messed up this old fool.
Don't pick fights with the bullies or the cads,
cause I'm not much cop at punching
Other peoples dads.'

He hears the word 'cads' as 'cats' and it always makes him giggle.

We had lunch in the pizza restaurant and Duncan ate ice-cream. He got really loud and angry when my friend's 2 year old son was upset, he frightened the little boy, which made Duncan more worried and aggressive behaving, shaking me and shouting. He calmed down quite soon and I had to reassure him multiple times that A. (the 2 year old) was OK.

He has for a while now become very distressed when he hears anyone crying. It can be tricky when we're out somewhere and he's near a crying baby or child. He has also become more anxious and worried about things in general. If he hurts himself he asks over and over, 'Duncan will be fine, Duncan not die?' He asks the same if he hears Lady or Thomas hurt themselves. A few days ago we were playing and he scratched me by accident, causing the skin to break. I told him he had hurt me and he said sorry and went to kiss me better. But them he noticed the mark and became really distressed, running off and getting tissues and a cloth and rubbing the mark and crying. He didn't want to see the (tiny amount of) blood and it took repeated statements that I was fine, I would not die, the new skin will grow, to help him settle. Since then, he's regularly checked the progress of healing on the little mark.

He's also stared to worry about the house burning down, especially if he's spilled something, and asks for reassurance about that regularly.

I have noticed that he seems to feel compelled to tap twice with the side of his fists, whenever he makes a mistake in setting up his toys or if he drops something. That doesn't bother him though so it doesn't bother me either. I am concerned about his anxiety though. I'm looking forward to more daylight and nicer weather and getting outdoors more. I think we have all been inside too much over the dark winter months and fresh air and exercise will do everyone good, but especially Duncan.

24 Jan 2008

Lots of Blogs about Joseph Chikelue Obi

To expand on the previous post, apparently it helps to link to other people posting on this, so here they are;

Dublin based quack threatens blogger

The Quackometer is an excellent blog where the claims of quacks, con-artists and pseudo-scientists are evaluated and dismantled. Last autumn its author was forced by a legal threat from the Society of Homepaths to remove a post critical of them. Once more, someone from 'Big Quacka', this time a character called Joseph Chikelue Obi, has used legal intimidation on the same blogger, whose ISP have again caved in to baseless threat and removed the page. The Google cache is available here.

Here's an interesting section of the nasty letter his lawyers sent to the blogger's web hosts;

Kindly note that Google has already blocked the highly defamatory material from appearing on its search engines in the Republic of Ireland, and is currently in the process of extending the ban to other countries.
(My emphasis.)

They can do that?! What the hell is wrong with the world.

Obviously like loads of other people interested in free speech and fair play and not bowing to bullies, I'm going to repost the article. I missed it first time round so am grateful to Joseph Chikelue Obi for his actions and his efforts which have served to ensure that many more people all over the world will have a chance to learn exactly what his reputation is. More people will read the Irish Independent article detailing his fictitious Dublin-based Royal College of Alternative Medicine (heh!), or this article describing his frankly freaky claims of intimidation, or will realise he was stuck off the GMC register for “serious professional misconduct.”

He has a raft of blogs and web pages, nothing less than gloriously, outlandishly pompous and bizarre. If you're in need of a laugh, cut'n'paste these links (he'll get no Google juice from me);


But for lots more about this "doctor/provost/strongman/activist/Qualified Wellness Consultant/World's Most Controversial Doctor", read below the line for a copy of the Quackometer's post.

Irish readers will enjoy the bit where he claims some crank post at "
a highly respected International University in one of the British Commonwealth Protectorates."
I think he's talking about Dublin there. Did you all know Baile Átha Cliath is in a British Commonwealth Protectorate? Mad stuff this!


Right Royal College of Pompous Quackery - Dublin

Thursday, September 28, 2006

I had to share this with you. Following on from my recent Quack Word ‘Doctor’ blog, I came across the Royal College of Alternative Medicine (RCAM), a Dublin based - well, I'm not sure quite what it is...

What caught my eye was just the shameless aggrandisement of the site. It is quite hilarious, if not a little repetitive at times. Calling yourself ‘Doctor’ is somewhat pompous when all you have done is paid for some international postage. However, the man behind RCAM has absolutely no shame and titles himself as the:

Distinguished Provost of RCAM (Royal College of Alternative Medicine) Professor Joseph Chikelue Obi FRCAM(Dublin) FRIPH(UK) FACAM(USA) MICR(UK)

Wow! Probably, just Joe to his mates. Naturally, when you Google the qualification FRCAM(Dublin), there is only person who appears to revel in this achievement. I'll leave the rest as an excercise for the reader.

The distinguished provost looks like he is just another pseudoscientific nutritionist, his spin being “Nutritional Immunomodulation”. This is obviously a lot more clever than Patrick Holfords mere ‘Optimum Nutrition’, but having only one ‘omnipill’ is probably a poorer commercial decision that Patrick's vast range of supplements.

Obviously, Professor Obi has had a few problems with what probably amount to bewildering comments about his site as the legal threats and press releases concerning his ‘ethical’ responses to criticisms cover more space than anything else. ‘Ethical’ is a favourite word on the site.

The most recent press release states,

7th September 2006 : The Distinguished RCAM Provost, Professor Joseph Chikelue Obi FRCAM(Dublin) FRIPH(UK) FACAM(USA) MICR(UK) has formally accepted appointment as Chief Professorial Examiner for the Doctor of Science (DSc) programme in Evidence Based, Alternative Medicine (EBAM) of a highly respected International University in one of the British Commonwealth Protectorates.

This new qualification is primarily aimed at Medical Graduates, Physicians, Surgeons, Pharmacists, Dentists, Osteopaths, Chiropractors, Opticians, Wellness Consultants, Herbalists, Acupuncturists, Naturopaths, Healers, Podiatrists, Chiropodists, Scientists, Healers, Therapists, Homeopaths, Chinese Medicine Practitioners and Nurses wishing to ethically upgrade their current Qualifications in Alternative Medicine over an exceedingly intensive 12 - 36 month period of study.

British Commonwealth Protectorates? Could that be Dublin?

I really have no idea what this organisation is all about. But it looks like it could be getting quite big soon...

RCAM currently has International Vacancies for One Million (1,000,000) ‘Foundation Fellows’ (‘Movers and Shakers’); who will independently play a highly pivotal role in diligently mentoring (and regulating) its future Global Membership.

So if you really think that you seriously have what it takes to become a ‘Leader’ in Alternative Medicine, then (perhaps) RCAM may definitely be exactly what the Doctor ordered for you.

One million. That's a lot of quacks! And they are just to mentor (and regulate) the wider quack membership! This man has ambition.

The Big J really hates real doctors. This is his most recent press release...

RCAM would like to warmly commend the various Chieftans of the National Health Service of the United Kingdom for ethically and appropriately ignoring utterly misguided calls (from a rather amusing Group of thirteen Clinical Yestermen) to compel Hard-Working (and Tax-Paying) British Citizens to additionally pay for Life Enhancing Alternative Medicine Interventions out of their very own pockets - rather than get such treatments free via the NHS. RCAM would like to also categorically state that such exceedingly flawed ‘G-13’ demands that the National Health Service of the United Kingdom expediently abandon Alternative Medicine altogether (in total favour of Conventional Medicine) be diplomatically treated with the very utmost contempt which such unguarded verbal flippance duly deserves; as none of these 13 ‘Eminent UK Scientists’ behind such calls has professionally attained Globally Acceptable Fellowship Qualifications in Alternative Medicine and as such cannot be deemed competent enough to make such sweeping ‘Shilly-Shally’ statements about the noble independent specialty of Alternative Medicine.

RCAM therefore publicly advises the General Public to lawfully go about their normal Wellness-Seeking Behaviour as usual - without any unwarranted prejudice or fear resulting from such highly self-serving, morally unethical, abjectly crude, totally unprofessional, utterly unstatesmanly, morbidly barbaric, wantonly uncivilized, profanely undemocratic and unspeakably sacrilegious perpetual affronts on the therapeutically formidable institution of Alternative Medicine.

Now, I do not have ‘Globally Acceptable Fellowship Qualifications’ in Santa Clause Studies to know he does not exist. But hey. I must be a morbidly barbaric and profanely undemocratic, unethical duck.

So, struggling around the acres of pomposity I find one place where Prof Joe might be making some money. You can call him to seek his wisdom, after pre-booking an hour's slot (and handing over your credit card) for a mere €300. Alternatively, you can pay by the minute on the contact line for a trifling $10 per minute.

It's going to cost you $20 just for Joe to say Hello and to read out his numerous titles, qualifications and names. Not bad ‘ethical’ work.

Ethical Quackery, the Monarchy and Kate Moss

Thursday, October 12, 2006

No, this is not about our Defender of Quackery, our Quack-in-Chief His Royal Quackiness, Prince Charles, but about the Distinguished Provost of the Royal College of Alternative Medicine, Professor Joseph Chikelue Obi. And yes, it is just a rather lame story written solely to get a picture of Kate on my blog.

I've written a rather lazy blog on the distinguished professor before that was just a bit of a gawp at his quacktastic website and what looks like a health phone-line scam.

Well, I've done a little more digging with Google and it has revealed a few quack gems. It has been pretty hard work, since Google returns some 6,000 pages, the vast majority just appears to be Prof Obi's self-promotion. However, if you persist in digging a few interesting facts turn up.

So, what has the little black duck found out about the “most Controversial Retired Physician and ‘A-List’ Medical Celebrity, Dr Joseph Chikelue Obi”?

Here we go...

  1. The Irish Independent reports that his college does not exist at the Dublin address given on the web site. There's a surprise! It's just a front.
  2. The Independent goes on. “In January 2003, he was suspended by for serious professional misconduct at South Tyneside District Hospital. Among the allegations made were that he failed to attend to patients, wrote strange notes about colleagues and at one point gave a dating agency phone number to a psychiatric patient.”
  3. He was being investigated by the police for taking thousands of pounds off a 58 year old woman to in order to cure a long standing illness.
  4. The GMC strike Dr Obi off their register for “serious professional misconduct”. So much for him being retired.
  5. On another tack, Dr Obi has been involved in a little cyber-squatting. This looks as if it took place while he was a doctor - always after a few quid!
  6. Since then, now self-titled Prof Obi, a few new avenues have been opened, including trying to entice Kate Moss away to one of his ‘safe-houses’ in Ireland. Hat's off! He is quoted as saying:
    “Under the European Convention on Human Rights, Miss Moss still has fundamental rights, just like anyone else out there, and as far as I am concerned, she is not guilty of anything until an Ethical Jury says so.”
    (I mentioned before that ‘ethical’ was one of his favourite words.)
  7. Prof Obi has been developing a Penis Enlarger (watch out Kate) that his own Royal College has now endorsed.
  8. At least one person (out of the targeted million) has paid Prof Obi the fees for his college to accredit him. Dr Michael Keet (8 Canards) of the Central London College of Reflexology handed over ‘hundreds’. Do we feel sorry for out-quacked quacks? I guess we ought to.
  9. For those of you wanting to see behind the grand titles and see the real human being, Joseph lists his interests as Comedy in London, Whole Food Nutrition and Christian Music. On this ‘Meetup’ site, he describes himself as “Just a very ordinary guy...”. That's nice.
  10. His name appears very often on the blog Abolish The General Medical Council (GMC), often reporting something he has got up to. The blog describes itself as:
    An ethical blog for those who publicly feel that the General Medical Council (GMC) should be Statutorily Abolished in favour of a Medical Licensing Commission (MLC) to solely register and revalidate Doctors who practise Conventional Medicine in the UK. The Blog also recommends that the GMC/MLC hands all disciplinary functions over to an Independent Clinical Tribunal (ICT) in keeping with the EU Convention on Human Rights; to avoid (both) Institutional Bias and Multiple Jeopardy.

    Oooh. There is that word ‘ethical’ again. And ‘European Human Rights’. No name is given for the blog author but the avatar is a portrait of the queen. Another apparent obsession of Prof Obi - royalty. Could the author be none other than the Professor himself, a little agrieved for his ticking off? I hope you all click through to the blog. Maybe we will show up in his stats and whoever the writer is can get in contact and confirm one way or another.

    I rather hope he is, as the final thing I turned up would just be fantastic...

  11. Is the Distinguished Provost of the Royal College of Alternative Medicine, Professor Obi now selling ethical ring-tones? I do hope so. Watch out Crazy Frog! Here comes the Crazy Provost...


It does look like Prof Obi has read this blog. He claims on the blog ‘Abolish The General Medical Council’ the following...

And now we have the GMC sending the ‘half-wit’ Quackometer Bloggers after me, who (by the way) don't even know the very meaning of the word ‘Quack’.

Excellent. So I am a GMC Shill now to add to my credentials. Black ducks are not that clever, but half-witted is a bit harsh. And I don't know the meaning of the word quack. As usual for a quack, not a shred of evidence to support his claims that I have anything to do with the GMC.

I have a feeling this story will re-appear. But first, I must download that ringtone...

22 Jan 2008

'Autism Speaks' charity bully autistic child

I just read this on Abfh.

The massive charity, Autism Speaks, was founded just over 2 years ago by Bob Wright (formerly chairman and CEO of NBC Universal) and his wife Suzanne. They have raised and spent millions, with charity walks and huge celebrity-soaked galas; the latter tending to cost more than they raise, but hey, it's all about awareness right(!) Their extravagant use of funds is evident on a 2006 tax return (pdf link). Autism Speaks are proud to have James Watson quoted on their web site saying, “Autism is the worst thing that can happen to a family.”
(Link; http://www.autismspeaks.org/inthenews

I will never understand that.

This organisation are also responsible for the infamous 'Autism every day' film, in which a group of mums whine on camera about how hard their lives are because they are raising autistic children. The film was staged, and deliberately set out to make things look as bad a s possible, yet it was selling itself as an honest look at the lives of everyday folk. One fabulously wealthy mum spoke on camera about how she considered murder/suicide with her daughter, while that daughter was in the room!

The mission of Autism Speaks is displayed on their web site;

At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders.

We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.

Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle.

Autism Speaks. It's time to listen.

It should be clear to anyone reading the above, that when they call themselves 'Autism Speaks' they really mean, 'anyone aside from autistic people speaks.' This extremely wealthy charity is concerned solely with the prevention and cure of autism and not with ways of helping people live with autism. Many people opposed to the aims and methods of this monstrous organisation have supported a petition, Autism Speaks: Don't Speak for Me. I would urge you to sign it.

Recently, a 14 year old created a low key parody web site called 'NT Speaks' lampooning the ridiculously mis-named objectives of Autism Speaks. How did this huge and powerful charity and lobby group react; why they sent the lawyers after her! Yes, the charity who want 'to bring the autism community together as one strong voice' have made it very clear they do not want to hear the voices of autistic children who disagree with them!

The bully tactics employed included a letter signed by 30 lawyers
suing her for $90,000 for copyright infringement, funds lost and loss of supporters. This is how a multi-million dollar charity spend their income. When they realised her age, they dropped the monetary claim, but insisted that she destroy the source code and give up the domain name. The girl felt compelled to comply and the site has been destroyed.

What this child had done was entirely legal and Autism Speaks had no right to bully her in this way. Under US laws, parody is not considered a copyright violation. They have also threatened to sue anyone else who uses their logo or trade marked material; sites like this.

So anyone considering supporting this group in the future, or any celebrity thinking they're doing a good turn while getting themselves exposure and brownie points for doing some charity work, think about where the money may be going.

19 Jan 2008

More of Duncan's drawings

I don't remember if I have ever mentioned here how Duncan is interested in logos and titles, especially for films and TV programmes. He will replay the opening scenes on his DVDs and videos many times, pausing to have a good look at the logos. Youtube has once again proved its marvellousness, since lots of other logo fans have made films of the idents and logos. Right now, I'd say his favourites are the VCI and Ragdoll production logos on his Tots TV and other BBC films. He draws these often, on the PC, on paper, on the steamed up car window and sometimes creating versions made from lego.

Here's a film he and I put together of some of his most recent PC produced logo pictures. I have not yet bought him a graphics tablet (must do so soon) so he has managed to create all these using a rather wonky mouse and the not-too-user-friendly Windows Paint program.

He has also drawn loads of other pictures, saving and naming them for himself. I love how he draws people, how expressive the faces are. He always draws PC pictures by first zooming into the background (usually a screen shot of his Dogz game) so the finished pictures are very small when viewed at actual size.

For these films, he chose the music and told me what to write on the titles.

17 Jan 2008


Like many other people who have heard of Katie McCarron, I have been thinking about her and her family often over the past few weeks. Katie was a little autistic girl, whose mother suffocated her with a plastic bag. The jury has just announced their verdict that the murderous mother is guilty. Katie's dad and grandparents and others in her family have spoken of their beloved child with dignity and pride. I hope that they will receive a small measure of comfort from the outcome of this trial.

In my previous post I wrote of the Dr Suess book I read to my own autistic son. It contains the lines, 'A wasn't just isn't. He just isn't present. But you...You ARE YOU! And, now isn't that pleasant!'

I didn't write it before, but it just made me think of Katie. She wasn't 'a wasn't.' She existed and it was 'pleasant' for all who knew her, though it's oh so hard to deal with the cruel and terrible lose. She was lovely and loved. SHE WAS SHE!

She will always be, because there are people all around the world, who were so moved by her loss, so touched by the words her grandfather shared, and who will often look at their own children and hug them that bit tighter to remind them of how precious they are. Katie will be remembered for a long time to come.

What's worse than having an autistic child?

NOT having that autistic child.

Duncan has enjoyed Green Eggs and Ham by Dr Suess since I bought him a CD Rom of the story a while back. Before Christmas when I asked him what he wanted Santa to bring, he said 'Green Eggs and Ham book and K'nex roller coaster.' Santa was very obliging, even managing to get an older edition of the book with the required orange cover, as seen on the CD Rom. Duncan knows the story off by heart, but has read it to himself loads of times anyway. He carries it about with him, taking it to bed to put under his pillow. He never goes in the car without the orange book on his lap.

I spotted another Dr Suess book in a charity shop a few weeks ago, Happy Birthday to You! I read this to him yesterday for the first time. Wow, what a book! It's got all the usual funny, silly rhyming lines, it's got the weird and wonderful illustrations, but it's also got some of the most profound and amazing lines. I am a total soppy fool for this kind of thing, but I had to gulp back the tears a few times while reading, and I kept stopping to hug my wee man sitting beside me, enjoying the story.

If you'd never been born...
Why, you might be a WASN'T!
A wasn't has no fun at all. No, he doesn't!
A wasn't just isn't. He just isn't present.
But you...You ARE YOU! And, now isn't that pleasant!

I hope that the time will come when all children and adults, no matter what they look like or what they are capable of or sound like or who they're attracted to or who their parents are or whatever- will be able to, (in the words of Dr Suess);

Shout loud at the top of your voice, "I AM I!
I am I!
And I may not know why
But I know that I like it.
Three cheers! I AM I!"


I am what I am! That's a great thing to be!
If I say so myself, HAPPY BIRTHDAY TO ME!

15 Jan 2008

Remember Brent Martin

(Thanks to Dave Hingsburger, for bring this to my attention. It wasn't mentioned in the national news sources I follow.)

Last August, Brent Martin, a 23 year old man with a learning disability, was beaten to death in an English city. One of his attackers is currently on trial for the murder, the other 2 having already pleaded guilty to murder. The prosecutor is quoted in a local newspaper as saying;

"They behaved like a pack of animals as they repeatedly punched, headbutted, kicked and stamped on Brent Martin – and that man, Brent Martin, never lifted an aggressive finger towards one of them.

"They did that to him until he was dead."

Mr Hedworth said the 17-year-old was one three assailants who carried out the attack.

The others, William Hughes, 21, of Washington Road, Sunderland, and a 16-year-old youth, who cannot be named, have each admitted murder.

"The three of them were, from start to finish, in it together," said Mr Hedworth.

"They did it for their own sport."

The defendant and the 16-year-old had each trained as amateur boxers and knew the consequences of violence, Mr Hedworth added.

"They set out quite deliberately to do serious harm to Brent Martin for their own amusement and to make themselves look big in front of their friends, even inviting others to hit him.

"As the attack went on its nature, its ferocity, and its perseverance made it quite clear they were not going to be happy till he was dead.

"Subsequently one or more may have regretted they went as far as they did but at the time they had no such sensibility – no restraint, no qualms and no mercy."

The court was told all three youth were bragging and "seemed pleased with themselves" immediately after the attack.

This was a disability hate crime. I can only hope that sentencing will reflect the terrible nature of this crime, and the need to challenge discrimination against disabled people.

I have just read that the Scottish government plan to update their hate crime laws to include attacks on people due to their disability or sexual orientation. Northern Ireland hate crime laws already cover attacks due to disability. I also just came across an organisation called Respond who seem to be doing good work (I have merely browsed their web site) and who are in favour of more recognition for the offence of disability hate crime. They have discussed the murder of Brent Martin in their evidence to the Joint Committee on Human Rights inquiry into the human rights of adults with learning disabilities.

What can we do about this? There are people who feel it is acceptable to harass or physically attack people for all sorts of reasons. How can we do our bit to make such behaviour less common and to promote respect and decent treatment of everyone? I've been told that I can't change the world and I should try to help Duncan (because obviously I worry about people taking advantage of or hurting him when he's grown up) progress as much as possible. Presumably this is so he stands out less and is not so much of a target.

I think this attitude excuses the people who commit the crimes from responsibility. It's the same approach that says women who are raped are sometimes at least partially responsible for dressing wrong/being in the wrong place/putting themselves in danger, when really it is always all the rapist's fault because it is always wrong to rape someone, no matter what they are wearing or have been drinking or whatever.

Over the few years, I have been reading about disability issues. Every time something comes up in the mainstream news sources and discussion forums, I have been appalled at the attitude of many people who would think of themselves as decent and/or liberal, but who seem to see disabled people, especially those with a learning disability as much less worthy of their respect and understanding. They talk about 'mental ages,' describe people as 'vegetables,' excuse unethical medical interventions. There's a blog I read occasionally; the author recently wrote a post explaining why he was going to continue to use the word 'retard' whenever he wanted and slagging off the 'PC brigade' who might be offended. Jeez. Now these people would not go out and beat up their neighbours with learning disabilities, but it all promotes a culture where it's acceptable to make fun of people for being different, and in which some thugs take things a bit further and do real harm.

I'm like an ant shouting in a shoebox here for all the difference this will make. I can only try my best in my own life, raise my children to be respectful and understanding and challenge the discrimination when I see it.

My thoughts are with the family of Brent Martin. RIP Brent.

9 Jan 2008

Neither therapy nor treatment required

Not for autism anyway.

A few weeks ago I got a comment on a post I wrote about a year and a half ago. The post called Novel Treatment for Autism, was about how Duncan's natural maturation coupled with parenting appropriate to his learning and living styles, was responsible for his development, as opposed to any 'treatment' or 'therapy'. The comment writer, Lynne, had a major problem with my attitude towards my son. She wrote (referring to my post);
This article cracks me up. The author ostensibly wants to give her child time to "just play or ponder." Then cites how her child uses a TV/DVD player which he watches a lot.

It's scary this mom is rationalizing letting her kid watch TV endlessly and then do video talk as an educational process. Wow. Yeah, I bet that is a lot more effective than those crazy moms who are trying to keep their child engaged.

Be sure to forward this article to all the lazy moms so they can feel better about not taxing themselves or their child. No need to spend your time trying to teach your child, do like her and lock those internal doors to avoid unnecessary battles. Apparently no effort is the key to expanding a child's reading ability, vocabulary and even, diet.

I doubt that Lynne, having been so scared and cracked up by what I had to say, will be back to see any reply I might make. It's odd how she makes the leap from what I wrote to calling me a lazy mum who makes no effort. She seems to have real issues with my son's use of TV as one of his learning tools.

It's like this Lynne, and anyone who might think she's right. Duncan is a highly visual learner. TV and DVDs are great tools that optimise his individual learning style. The worst thing for Duncan would be for me (or a series of strangers) to sit across a small table from him, armed with a bag of sweets, training him to respond to a series of discrete trials in exchange for a reward. For Duncan, the rewards are intrinsic to the task. He wants to find films about cuckoo clocks, so he has to spell the words properly on YouTube, rewarding him with a fun film about the manufacture of clocks in the Black Forest of Germany, or whatever he digs that day.

Duncan plays and ponders much. I came across him sitting on the floor of my bedroom this afternoon, dressed only in a pair of pants (he was playing at being Tarzan) and staring into space in a daydream with a pile of Lego spread out in front of him. Who knows what he was thinking about just then. I left him alone to his thoughts, and turned quietly away. He was standing beside me soon after helping me cook a fried egg.

In the past few years Duncan has continued to develop and I stand by everything I wrote in that post. I no longer have to lock any internal doors. I can trust him not to stuff food or toys in the DVD player or to throw something at the expensive speakers. I have moved all the boys' toys into their own room so he can access whatever he wants. He no longer throws every single toy on the floor when he's playing. He can help me put them away at the end of the day too, though he doesn't like doing this!

He now enjoys books and will frequently approach me with a book to read to him. His computer activities, including looking up his topics and characters of interest on YouTube and Google, his CD Roms and online games, together with a few short teaching sessions with myself have all helped him learn to read and write. Yesterday, he read a Hansel and Gretel story for me. It was entirely new to him, and he was able to decipher and understand almost all the words himself.

His speech has come on so well. Repeating scripts from films and games has helped him make sense of different words and sounds. He used to try to say the lines, in a garbled, mixed up way. Once I figured out what lines he was on about, I would say them for him, slowly and clearly, giving him time to hear the components of the words and learn how to say them for himself. That, combined with lots of time spent together, playing and getting on with life, have given him many chances to hear words, for me to listen to him and to interpret and if needed show him how to pronounce things. I'm now finding that his writing, much of which is still using 'invented spelling' ie, phonetic spelling, is showing me what words he has heard wrong. When I show him correct spellings, he gets a better idea of how to say these words. His reading, writing and speech are all helping each other and are going to make communication much easier and more successful for him.

He plays more complex games, enjoys being with his siblings and extended family as well as a few close friends. He has developed an individual and amazing ability for computer produced art, creating a few lovely pictures every day.

All in, he is a great boy, loving and mischievous, clever and committed, with a love of learning about so many divergent topics. He makes me smile, laugh, worry, rant and proud, sort of like how all children affect their mums.

This process is called parenting and education. There's no need for therapy.

8 Jan 2008

Tarzan Times

For the past few days, it's been all about Tarzan for Duncan. He has watched loads of clips from the Disney film on YouTube. He then found other versions of the story, including a cheesy 70's animation. I've listened to (endured?) countless Phil Collins songs. I actually really like the soundtrack, and the Disney film which I bought on video for Lady when Duncan was a baby. The scenes of the baby at the beginning of the film remind me of those days and my own wriggly boy and I can't watch them without getting a bit teary eyed.

He must have listened to this slice of euro-pop a hundred times today. (Be warned, clicking that link may irritate!) Somehow I've managed not to go bananas.

And of course, the pictures are produced and the Dogz are adopted and named. On the left are Tarzan dog, wearing his little brown loin cloth, and Jane dog, pink skinned and pretty in a yellow dress and Panama hat.

On the right we have Tarzan rescuing Jane, who is gripping her yellow umbrella.

The bottom picture shows the lord of the jungle himself, strong and wild, swinging on a vine with his hair flowing free.

I wonder what will catch Duncan's imagination next?

7 Jan 2008

The Past Few Weeks

We got over the holiday season. It was mostly very nice, but everyone has been sick in various ways for the past week; not quite so nice.

So what were the highlights;

  • Obviously, Christmas morning, and the children delighted with their haul, even Lady who earlier in the year reasoned out the truth about the man in red.
  • Playing and watching the others on the new Wii game, our first games console and a fabulous bit of kit.
  • Lady in her new dress-up 'ballgown' ('cause 9 year olds still like that kind of thing) and Thomas in his Quidditch robes.
  • Duncan enthralled by Roller Coaster Tycoon 3 PC game. It is just so right for him!
  • Christmas dinner, once it was on the table!
  • Heading off with my sister on Boxing day and going out with a gang of cousins and our brother in the home town and yapping and laughing and drinking (cokes only for me, my SVT episodes were frequent and I didn't want to risk alcohol) and dancing and being benignly rowdy. That was great.
  • Having my 4 year old nephew C. stay with us for 2 nights while Lady stayed with his big sister in their house. He and Thomas get on well, and more than a few games of Doctor Who and various super-hero type games were played out. C. made me laugh by putting on an American accent for these games, as opposed to his usual, shall we say, broad north west Irish one!
  • Visiting with my family. We had a lovely visit with my aunt P. Duncan loves her house because they have a cuckoo clock. He didn't want to leave, saying 'no go home. Duncan stay in P's house, Duncan sleep in P's bed.' We liked their little dog too, a sweet if rather shy miniature schnauzer. I could see one of those in our house! Even Gordon is saying we need to think about the dog thing again.
  • Duncan's many, many new computer generated pictures. Every night we look at what he produced, marvelling at the attention to detail and laughing at his titles. I will make a slide show soon to preserve them.
  • Having the whole family together for so long. We've adapted our spare room to be a serviceable study and Gordon will work from home more this year, and he won't travel abroad anything like as often. That'll be good for everyone.

2007 was a good year, I have every hope that 2008 will be even better.