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Open letter to Raun Kaufman of Son-Rise

30 Sep

I read your press release today Mr Kaufman and I just wanted to pass on a few thoughts to you. Your PR piece for an upcoming tour of my country begins with:

Parents of autistic children around the world face daily prognoses of hopelessness. Recent media stories highlight this: In April this year, Alison Davies, 40, leapt to her death from the Humber Bridge in northern England, taking her 12-year-old autistic son, Ryan, with her. In the U.S., Karen McCarron, 37, killed her three-year-old autistic daughter, Katherine, by placing a plastic bag over her head and then tried to overdose on over-the-counter medication a day later. She faces two charges of first-degree murder.

Every day around the world, parents like these are told that their children will never speak, attend a typical school, make friends, or even learn to dress themselves. Raun K. Kaufman tells parents something very different. He offers hope, help, and a concrete blueprint to reach “unreachable” children.

I am sickened and angry at your attempt to ‘justify’ two murders by passing them off as the end product of some alleged hopelessness. Ryan and Katie were murdered. Nothing – I repeat, _nothing_ – can justify that or make it understandable and your attempts to coerce emotional empathy from people by using their murders in so baseless a way is an appalling and reprehensible act of moral cowardice and cynical emotional blackmail. Your message seems to me to be clear: come hear me speak or you’ll end up killing your kids.

I’ve had the honour to become close with Katie’s Grandad and I would like to speak from the position of adopted family: this is not appreciated, wanted or deserved. After Katie was killed, Mike contacted Stephen Drake to let him have some photos of Katie. The terms of their use was made clear:

They do not wish for the photos to be used in any way suggesting Katie’s death is associated with a “problem” arising from a lack of services, or a symptom of “desperation” felt by other families. Using Katie’s picture in these ways would only be an insult to her memory and cause more pain to an already grieving family.

Whilst you stopped short of usurping photographs of Katie, you did the next worst thing and usurped the memory her family have. What gave you this right other than the ‘right’ you took upon yourself to emotionally blackmail parents?

You owe the family an apology Mr Kaufman. I hope you can make it sound as sincere as your pious whining about hopelessness.

Grandmas

29 Sep

I spoke recently about Grandad’s and how Nat’s Grandad, Katie’s Grandad and Megan’s Grandad all helped their kids and their grandkids just through being there and accepting. Grandads bring calm and perspective.

What about Grandmas?

Its no exaggeration to say that without Naomi’s mum we would’ve been sunk a long time ago. In so many ways she has helped us and therefore helped Meg. She was calm when we were stressed. She brought food when our freezer broke, she used to pick me up from work sometimes. She comes over at least two or three times a week to help Naomi educate Meg and look after Tabby. All day. Not just for an hour or so.

Whenever she goes shopping she buys presents for the girls. Just a little something so that they know she’s thinking of them and indirectly that we know she’s thinking of them too. When we went through our bad period with Megan’s school last year she was there to listen. She made sure we knew she was outraged on our behalf. She understands exactly when the right time to approach Meg is and when the right time to leave her alone is. When Meg was diagnosed she kept reminding us in silent ways that Megan was who she was. She bought her nice clothes. She bought her toys that she knew Megan would like (toys that spun mostly;o) ) and always treasured and valued her. Long before we came to terms with the fact Megan was autistic and that that wasn’t a bad thing, her Grandma had. She reminded us that having children is not a right but a privilege but she never did it in a way that made us feel bad. She led by example.

Some people never get awards, or knighthoods or recognition and these are people who usually richly deserve that very recognition. Naomi’s mum hasn’t solved world hunger or absolved the debt of developing nations or found a cure for cancer but she is a hero to us. I said once of Mike McCarron’s relationship with Katie and now Meg that everyone should have such a Grandad. I’d extend that to Naomi’s mum – everyone should have such a Grandma. We love her very much.

Autism Podcast Interview

28 Sep

Autism Podcast Interview

Michael from Autism Podcast interviewed me yesterday. It was the first time I’d been interviewed via Skype or trans-atlantically which was a novel experience. I was a bit concerned at how well the connection would hold up with VOIP still being a technology in its infancy but I think both Michael and I were pleasantly surprised at the quality of the voice connection.

The interview itself was very interesting and thought provoking (for me anyway) – its always good to examine (or re-examine) your own ideas and motives I think and Michael asked me some good questions on the purpose and aims of the Hub as well as asking me about Megan and how we approached raising her.

I tried to lighten my voice and flatten my local accent for US audiences (my voice is stupidly deep and Midlandsy) but I still come off as a cross between Robbie Williams and Barry White. Bah.

Also, here’s a little snippet of Meg :o)

Grandads

27 Sep

After the murder of Katie, one of the things that shone through clearest of all in news reports and in blog comments sections and most of all in my private correspondance with him was the unquestioning love and total acceptance Mike has for Katie. My family nd Mike’s have swapped pictures of each other and in one of the many of the McCarron’s we have had printed and framed is a picture of Katie sitting on Mike’s knee. The expression on Mike’s face is something to behold. It is total and utter pride and happiness. He’s looking at his beautiful granddaughter, not the camera.

Another picture Mike sent us was one of the extended McCarron clan holding up a sign with a message for Megan, their newest granddaughter, on it. The message is private, the act one of pure unquestioning acceptance and love.

Megan’s other granddad is a Captain for British Airways. A quiet, reserved, very British man he personifies the unflappable Englishman in all he does and says. His life is one of quiet pragmatism in all matters. Except when it comes to his granddaughters. For Megan he recently walked the streets of New York covering a distance of fifteen blocks searching for a toy that Amazon.com did not carry because he knew that Meg would get a lot out of it. He should’ve been resting between flights but elected to sacrifice that time for his granddaughter who he dotes on.

Today I read an entry from Susan which demonstrates once more what grandparents can do to help their children and grandchildren. The poem Susan wrote is very very good. The picture she posted of her Dad and her son exchanging a look of mutual love is pure gold.

Understanding autism

25 Sep

Understanding Autism article (917kb).

I was asked by a journalist from Action Network if I would write an account of our lives with Megan and what role autism played in our family which I was happy to do. I elected to write about our familial transition from grief to acceptance and how it had benefited Meg’s progress (and ours) tremendously.

They did a bit of judicious editing (I have a tendency to waffle on occasion) and (oddly) described this site as a ‘company’ but its a good article and I’m thankful to Action Network for giving me the opportunity to speak about my favourite subject – one of my kids – without fear of encountering a stream of abuse directed towards her.

In My Unending Quest

15 Sep

To turn the web purple (must be a phase) I’d like to introduce you to my latest redesign. Lets face it, the site needed it. It was getting just a tad ramshackle around the edges.

Where the old design was heavy on colour, this goes back to my more minimalist roots. I’ve ditched SIFR in place of dynamically generating images for headings on the server. I’ve made sure shorter blog entries don’t look like crap, the underlying code is tighter and more robust and generally its all a bit spick and span.

The biggest change was upgrading from my creaky WordPress 1.5 admin engine to this sleek lovely WordPress 2.0 admin engine. Its a big improvement and was really the main reason this whole redesign was done. Thought I might as well tart up the whole thing.

For those of you with the new Windows Vista default font sets installed you should be seeing them. For those visiting in Firefox, Moz and Safari, things are golden. For those visiting in IE6 and 7 there are minor layout issues with the right column. Same for Opera. If this was a clients site, it wouldn’t be OK to leave these things unaddressed. But its not. And frankly, I can’t be bothered :o)

Have a dig around, let me know if anything’s broken.

Better Late Than Never

12 Sep

Joseph meme-clobbered me with a book meme awhile ago. This is a serious thing as I love books. Fiction, Non-Fiction, prose, poetry – love it all. I had to think long and hard about this.

One book that changed my life

Fiction: Lord of the Rings. My mum read it to me and my brother when we were kids and I was utterly captivated by the depth and strangeness of it all. It sparked a life long (so far) deep abiding affection for fantasy, sci-fi and horror novels and films. Its one of the books I re-read at least once a year.

Non-Fiction: HTML 4 For the World Wide Web by the wonderful Liz Castro. Up to this point I’d been flashturbating like crazy. This book changed my whole approach to web development.

One book that you’ve read more than once

Fiction: The Dune series (not the shitty new ones just the Frank Herbert ones). These are the only works of fiction I know that even approach Tolkien for depth and pure story telling. The first in the series is as close to perfection as a book can get.

Non-Fiction: Simon Schama’s History of Britain Book II: The British Wars – It’s Tudor-tastic!

One book you’d want on a desert island

Sorry, this is silly. One book? I refuse to divulge anything less than a top five. I would recommend everyone has these books.

1) Koko by Peter Straub (probably the best chiller/horror ever written. Classy, reserved, menacing).
2) Flashman and The Dragon by George MacDonald Fraser (if you ever need cheering up Flashy will do it. He’s a literary character – from Tom Browns School Days – placed in Victorian Britain at the height of the Empire. Coward, bastard, rake, hero, poltroon).
3) Only Forward by Michael Marshall Smith. Better known for his ‘Straw Men’ series of chillers, this is an innovative and witty sci-fi. His first published novel.
4) The Shining by Stephen King. His best book IMO. I still can’t look at the numbers 217 without shivering.
5) Fever Pitch by Nick Hornby. A book of empathy. I gave it to my wife to try and explain why football matters. She loved the book but still thinks footy’s crap.

One book that made you laugh

All the Flashman book by George MacDonald Fraser. Seriously, buy one. Read it. You won’t regret it. Oh yeah – Catch 22 as well.

One book that made you cry

OK, here’s where I reveal my inner big girls blouse: Little Women had me in bits.

One book you wish you had written

None really. Pleasure is in the reading.

One book you wish had never been written

Can’t think of anything bad enough to warrant never having been written.

One book you’re currently reading

Fiction: The Last Witchfinder by James Morrow. Great book for skeptics ;o)

Non-Fiction: Designing Visual Interfaces: Communication Oriented Techniques by Kevin Mullet

One book you’ve been meaning to read

The Design of Sites: Principles, Processes and Patterns for Crafting a Customer-centered Web Experience by Douglas K.Van Duyne is top of my Amazon Wish List :o)

Autism Speaks: Don’t Speak For Me

17 Jul

Following on from the furore created by the very misleading Autism Every Day film, I’ve set up a petition to make sure that the film-makers realise that not all parents of autistic people, or autistic people themselves, or professionals who work with autistic people are harbouring thoughts of murder. Neither do we appreciate our lives being intentionally misleadingly portrayed in order to gain a pressure group a bit more money.

Signatories will be stating that they:

Utterly repudiate the notion of murder being an acceptable response to disability.

Vehemently deny that most parents of autistic – or otherwise disabled – children harbour thoughts of murder

Testify that the false ‘reality’ concocted by Autism Speaks film ‘Autism Every Day’ is not a true reflection of the reality of parenting an autistic child.

Call for a public apology from Lauren Thierry for increasing ignorance regarding autism.

Please sign the petition.

Autism Hub Updates

9 Jul

I’ve introduced a few changes to the Hub over the last few days.

Firstly, the whole site has had a substantial redesign. This has (I hope) made things a bit easier on the eye, a bit easier to read the content you’re interested in and generally behave better across a wider range of devices.

There’s still some ongoing backend work which needs to be completed before I start accepting potential new members and there’s a few more front end tweaks to get slotted in to make users lives even easier but these won’t require any substantial aesthetic alterations or any downtime at all.

Secondly, I’ve introduced a range of t-shirts that you can buy via the Hub. Its a very small range at the moment but I’ll be designing and adding more over time.

The reasons I’ve done this is mainly due to the unexpected success and popularity of the Hub. It took me very much by surprise how quickly it took off and the long and short of it is that the Hub needs to start paying for itself fairly quickly.

There are several ways I could’ve gone about getting revenue but I despise adverts on sites (or – even worse – in RSS feeds) and I ‘m very much against the idea of paid-for content in this context so this seemed the best solution – the buyer gets something and I get a cut to go towards the cost of running the site.

I’ve no idea how (un)successful this idea might be as I’ve never done anything like this before but if I do make any money beyond the requirements of the site to sustain itself then I’ll be donating the excess to pro-neurodiversity websites and projects at the end of each year.

Lastly, I’ve just set up a new part of the Hub which is free for anyone to use.

It’s called the ‘autisticus’ and it works in exactly the same way as del.icio.us – it allows you to save interesting stories and blog entries to a central location.

All you need to do is head to the autisticus site, create an account and then add pages/stories/blog entries you want to bookmark. You can tag entries in exactly the same way as del.icio.us and there’s even a draggable bookmark shortcut for your browser. Over time, as more entries get added and tagged, there’ll be a big resource of searchable tags and entries to read and research at your leisure. You cn even add any existing del.icio.us entries you may already have.

So, go join up and start adding entries!

Indefensible And Unprotested

26 Jun

The McCarron family and the Leitch family have become close over the last few weeks. We have never met. We have never heard each others voices. We have only seen pictures of each other and communicated by email but in that communication has been a sharing of warmth, emotion and desire to connect such as some people never seem to get in their lives. We have swapped addresses as well as photos and they know should they ever want to come to the UK they have a home here. We know that the reverse is true also.

And yet I wish it wasn’t so. A part of me heartily wishes I’d never spoken with Mike. I’m sure he feels the same. This is because of the circumstances that led to us meeting. The murder of his granddaughter, Katie McCarron. If I could ensure a return to life in the arms of her dad, sister and grandparents by swapping that for the friendship of one of the kindest, bravest families I’ve ever met then I would do it in an heartbeat.

Mike refuses to see Katie portrayed as a burden, or as someone in pain. This is because she wasn’t. He also refuses to let people directly or indirectly attempt to absolve Katie’s killer by making murder the responsibility of an uncaring society. This is because it wasn’t. It was murder.

Recently, Stephen Drake of Not Dead Yet, wrote a press release calling for restraint when reporting these kind of murders – i.e. murders of disabled kids.

Researcher Dick Sobsey has documented an increase in the murders of children by their parents in Canada in relation to well-publicized and sympathetic coverage of the murders of children with disabilities. Articles about the alleged murder of a person with a disability should not contain more about the disability than about the victim as a person. More space should be devoted to grieving family members than sympathetic friends of the accused killer.

And yet, yesterday, the Chicago Tribune released a piece of journalism that can be best described as callow.

The piece starts off by portraying members of the mercury/autism connection as the inheritors of the sort of stigma that those who actually were persecuted by Bettlehiem underwent:

It has been nearly 50 years since mothers shouldered the blame for their children’s autism. Yet for many parents, echoes of that painful era remain……

In the 1950s and ’60s, the medical community accepted University of Chicago psychoanalyst Bruno Bettelheim’s assessment that “refrigerator mothers”–those with a supposedly cold, unloving demeanor–brought on their children’s disorder.

Although we now know that autism is a neurological disorder and not the result of bad parenting, the exact cause remains a mystery.

Many parents, however, are convinced they’ve found the answer. And most experts are on the opposing side.

Indeed, few medical battles are more charged than that between parents who believe mercury in their children’s vaccines brought on autism and the medical establishment that has found no evidence to support that claim.

Where the ground really starts to shift is the next association made – that it was this society induced guilt that led poor heroic Karen McCarron into killing her vaccine-injured ‘heavy toll’ inducing daughter.

Some who knew McCarron through her work with an autism support group say the physician blamed herself for allowing her daughter to be vaccinated, and feared that the available remedies wouldn’t make enough of an improvement to her daughter’s quality of life. Others suggest that perhaps working among other doctors skeptical of the vaccine connection created an emotional tug of war for McCarron

I think I know Mike well enough now to be absolutely sure that he and his family would be _outraged_ at these utterly vacuous statements. To besmirch the memory of Katie McCarron by trying to empathise with her murdering mother and to try and absolve her and by implication blame the mainstream medical community is appalling.

In fact, the reverse is almost certainly true – the utter hopelessness that groups such as Autism Speaks like to foment are much more likely to have led to any depression Katie’s murderer might’ve had. And if she felt that vaccines caused her daughters autism then she long ago crossed the line into quackery. In this case, fatal quackery. There is still absolutely zero evidence that vaccines cause autism. Anyone – and I mean _anyone_ who has had a hand in perpetuating that myth bears some responsibility for the murder of Katie McCarron.

On the 22nd of June, Kellie A. Waremburg attempted to kill her four year old daughter. Thankfully she failed. Her daughter has cerebral palsy.

Shortly afterwards, the same barrage of testimonials commenting on how good a mother Waremburg was came out and how difficult it is to parent a child with cerebral palsy:

“She’s always been a good mom. She’s always interacting with her (daughter),” said next-door neighbor Katie Gardiner.

Families face challenges, there’s no question about it. Children have varying degrees of impairment. For some families, there is a minimal impact to families who need to take every aspect of their child’s care – feed them, dress them, toilet them,” said Morgan, who also is the chief of the section of child development within the Department of Pediatrics at University of Illinois College of Medicine at Peoria.

So? So what? Get over it, get on with it. If you can’t, then hand your child over to family members or social services and let someone who doesn’t put themselves first get on with it.

I want to clue these killer parents and those parents and groups who ‘understand’ killer parents into something: Your child is not your property. You have no rights over them. You have an obligation to parent them, love them, feed them, clothe them, teach them and let them be who they are. When you have a child, you put yourself last. If your career suffers – that’s not their fault. If you can’t go out as much as you used to – that’s not their fault. If money is a problem – that’s not their fault. Stop transferring your unhappiness about the way your life has changed into excuses for killing, or understanding the killers of, children.

I’ve had two themes running through this blog of late. One is this one – the murder of disabled children. The other one is what’s going on at the Judge Rotenberg Centre where electric skin shock is used to punish autistic and non-autistic students. People who believe in the concept of neurodiversity have been outraged and blogged both of these events continuously and thoroughly.

There is however, one section of people who has remained utterly and totally silent on both issues. The self styled ‘autism community’ who perpetuate the ongoing myth of vaccines causing autism.

Autism Speaks released a short movie about the horrors of having to live life with an autistic child. I’ve seen no movies about the JRC, or investigations into electric shocks for autistic people.

The NAA who regularly (and falsely) denounce good science and promote bad released a damp squib of an online petition and then fell totally silent on the issue.

Safe Minds? Nothing.

ACHAMP? Nothing.

These, don’t forget, are the people who call themselves the autism community. Seems to me like they care about one issue and one issue only.

And how about the anti-mercury bloggers? The grass-roots ‘autism community’.

Adventures in Autism? Nothing.

UPDATE: Ginger informs me that she’s temporarily not blogging at all and hadn’t even heard of Katie McCarron. In this light, it doesn’t seem fair to place AiA here.

Injecting Sense? Nothing.

Whilst these people continue their obsession with trying to find some kind of spurious link between vaccines and autism the world continues to turn. Whilst they present themselves to politicians and media outlets as the autism community, the world continues to turn. Whilst they attend single issue conferences, the world continues to turn.

Unless you’re Katie McCarron. Then the world doesn’t turn at all.

Unless you’re Lexus Fuller. Her world is shattered as she must grow up knowing her mum tried to kill her.

Unless you’re a student at the JRC where the world and time must appear to stand still as you are electrocuted for non-compliance.