Ooh what a kerfuffle!

There's been a certain amount of (ahem) debate over an article written by Minette Marrin of the Sunday Times and a delightfully robust response from India Knight. Go here to check it all out. Guess which side I'm on...

The Hunchback Of Notre Dame

Sunday 30 November and Sunday 7 December at 3pm
Graeae and BBC Radio Drama North are proud to present a radical radio dramatisation of Victor Hugo's classic tale of love, betrayal and moral courage.

The Hunchback of Notre Dame is a powerful story with characters on the margins of society, whose paths cross to create a gripping tale of spirituality, truth, beauty and the power of individual faith in historical Paris.

David Bower (Four Weddings and a Funeral) plays Quasimodo, the first time a deaf actor will have played the role in a broadcast piece.

This adaptation has been penned by Graeae's Literary Manager, Alex Bulmer, (Episode 1) and Skins writer Jack Thorne (Episode 2).

Where to Listen

The Hunchback of Notre Dame will be broadcast on BBC Radio 4 on Sunday 30th November 2008 and Sunday 7th December 2008 at 3pm. You can listen again for 7 days on the BBC iPlayer.

Abnormal

This is the website belonging to Ju Gosling whose project is a finalist in the DaDa Fest. Congratulations Ju!

Go here to view and vote for your favourite.

Shut UP!

Ah television. It's taught Jordan so much.

Lately he's been saying 'Elinor? Shut UP - I love that name!'

Moreover he says it in a perfect LA Valley Girl accent.

SPECIAL NEEDS HANDBOOK

Hi Helen,

thanks for your reply.

When Jordan's in meltdown I would say the main strategies I use with him are:

1. KEEP ABSOLUTELY CALM! This is vital. Do not shout or lose your temper. I know it's difficult!
2. Maintain eye contact.
3. Lower and modulate your voice. It makes Jordan listen to what I'm saying.
4. Keep your tone and body language neutral, it defuses the situation.
5. Say something like 'we'll talk when you feel better/have calmed down'
6. Walk away (out of range!)
7. If he keeps hitting/yelling/kicking/destroying the good furniture keep saying number 5.
8. When he has calmed down, I always shake his hand and commend him on his self-control.
9. Let it go and move on immediately. Life's too short to hold a grudge or anticipate the next time a meltdown occurs.

This is my current approach. Some of which I learnt by trial and error. Other things I picked up from other parents (always a useful resource which is why your handbook is such a great idea!) I change my approach to fit the situation and always err upon the side of motivation for good behaviour rather than punishment for the bad which can be too negative. And it works! Jordan is calm and collected most of the time. It wasn't always so. When he was 14 and already taller than me he could be very violent. He once had me up against the wall with his large hand gripping my throat. I maintained eye contact, lowered my voice and informed him in calm modulated tones that he could strangle me if he wanted but did he know he didn't have any trousers on? He looked down, laughed and let go!

10. Oh yes, a sense of humour.

Hope this is of use.

With very best wishes,

Elinor.

If you would like to contribute to this excellent initiative then please contact helen@specialneedshandbook.com

When blogs collide!

I just posted about this on my writing blog but I think this is a good 'un for this blog too.

OSKA BRIGHT: A Film Festival run by and for people with a learning disability.
Visit their website here.

Yum yum

This just in...

Prolonging life and preventing serious illness.

The British Medical Journal has recently published a study that has looked at the effects of adherence to a Mediterranean diet which consists primarily of vegetables, fruits, legumes, cereals, fish and a moderate intake of red wine. Other features of a Mediterranean diet include the use of olive oil as the only source of fat and low consumption of red meats. 12 studies with a total of 1,574,299 subjects were looked at, the subjects were followed from between 3 and eighteen years.
The study found that greater adherence to a Mediterranean diet is associated with -

a reduced risk (9%) of mortality from any cause.
a reduced risk (9%) of mortality from heart disease
a reduced risk (6%) of mortality from cancer
a reduction (13%) in the incidence of Parkinson's disease
a reduction (13%) in the incidence of Alzheimer's disease
These figures are impressive, the study notes that most of the world's major medical bodies strongly promote the adoption of a Mediterranean diet in order to reduce the risk of disease but also points out that adherence in recent years has actually reduced even in those countries bordering the Mediteranean sea. This is attribiuted to the increased popularity of supermarkets and fast food outlets in Greece, Italy, Spain and Portugal. Greece has the highest incidence of obesity in Euope (26.2%).
An American study, also reported in the BMJ, found that "most deaths during 24 years of follow-up in middle aged women could have been avoided by a combination of not smoking, maintaining a healthy weight, regular physical activity and a healthy diet". Given that the number of people who are overweight or obese in the UK is increasing it would seem that the NHS should redouble its efforts to get the healthy lifestyle message across.

Thought bubble

I snapped this (to me, at any rate) amusing shop sign at Alicante Airport.

As you can see, Jordan is not very approving. I wonder what he's thinking...

A. Really mother, HOW juvenile!
B. For goodness' sake woman, I need a hamburger. NOW!
C. You are just so, like, REALLY embarrassing...

Eye Tests

I had one yesterday and discovered that as well as Posterior Vitreous Detachment, myopia, astigmatism and cataracts, that my sight has improved from - 13 to -11. Woo hoo! This being a cause for celebration, I treated myself to some Vivienne Westwood frames.

They also took a photo of my retinas which told me rather more than I wanted to know.

Come and join...

...my new FaceBook group : Don't Upset The Normals

You know you want to...

Collaboration

It's been in my mind for some while that Jordan and I should collaborate on a story book together that could be enjoyed by and relevant to students with learning disabilities and their neurotypical peers of all ages.

Jordan has been talking about living on his own in the forest so I thought an adventure story that could also be seen as a metaphor for independence would be the way to go.

ME: So, you're in the forest and you feel thirsty. Where would you get a drink?

J: From the river! (accompanied by a roll of the eyes).

ME: What happens if you get hungry?

J: Don't eat leaves. Kick a tree and an apple will fall into your hand.

ME: Good answer! Where will you sleep when you get tired?

J: Behind the tree. (Demonstrates snoring technique).

As you can see it's still in the planning and development stage. We're off to Spain soon so we'll kick an outline into place there.

P-A-R-T-Y? Because he's gotta...

We spent the weekend in Halifax at a friend's thirtieth birthday. Jordan did what he always does, which is to sit and watch it all going on around him. What with the flashing lights and loud music, I think he does well to do this for a boy with autism. One half pint of Foster's and a request for his fave tune (Hey Baby by DJ Otzi since you ask) and my boy threw walking aids and caution to the wind and took the floor in fine style. He stuck it out for three songs before heat exhaustion threatened. A BIG step forward in every sense.

BEER AND WEAPONS

Two new, ahem, developments. Jordan wants to wear armour and wield a sword. Yes that's right, a sword. Armour I can handle but weapons I'm not so sure about. For a start, we live in Peckham which has all sorts of knife issues. Not that I'd let Jordan loose outside with a sword you understand, it's just that they aren't toys (which I can't make him understand) and it's practically guaranteed that it would be my eye on the tip of it in the event of an accident. So, Jordan's going around singing 'If I only had a sword..." to the tune of 'If I only had a heart..." from The Wizard of Oz.
In other news, Jordan has tasted beer and likes it! Well, he is 17. He got very giggly and slid off the swivel chair.

YAY! It's the summer holidays!

Jordan is thrilled that the long-awaited holidays are upon us. He has a busy schedule involving checking out his favourite YouTube clips: he particularly recommends Little Shop Of Horrors, Hey Baby by DJ Otzi, The Last Unicorn and fave Elton John songs. He's also busy collating what he has and hasn't got on video and DVD. Any suggestion from mama that a little swimming trip might be in order was met with a firm refusal as he has taken a 'no-shoes' vow for the duration.

So, determined to get him to do SOMETHING that I think is important, I have a cunning plan to photocopy the titles of some of his favourite videos and see if he can recognise the words without the pictures.

Creature Discomforts

The charity Leonard Cheshire Trust has launched a series of animations to challenge perceptions of disability. You can find more here at YouTube. Enjoy!

My people will call your people

For a young man with autism, SLD and speech problems, Jordan is sometimes quite keen to communicate with others, but only when the subject is his favourite Disney film (currently Pete's Dragon) or a subject of his choosing (currently any other film with a Pete in it, like Peter Pan or O Brother Where Art thou?) or any real life Pete (a former friendly school bus driver). I'm sure you can see a theme here.

Jordan's dad having to work today, I decide to take a quick bath. The phone rang and I assumed that it would go to answerphone as Jordan finds it fiddly to answer with one hand. Imagine my surprise when he brought it upstairs to me, chatting away with one of my husband's clients (and it wasn't about Pete - any of them!) I duly praised him and nearly got my ribs broken in an almighty hug. All very positive.

My brother rang for a chat later. Jordan beat me to the receiver, pressed the right button and said 'Hello, Uncle Ralph, what can I do for you?'

How I do love a big step forward.

DISCLAIMER: The glass of wine was left out from last night!

Sports Day

Yesterday was Jordan's school sports day.

An event hitherto marked by him lying on the grass proclaiming 'I'm cold and I'm bored and I want to go home!' Trust me, he can keep this up for HOURS. A performance usually inspired by the fact that I had dared to turn up.

However yesterday he participated in the potato and spoon race, the relay and the long jump. Jordan and his fellow students were well-supported by staff and the lovely pupils of Dulwich College. And it didn't rain! A splendid time was had by all.

he's had his hair done and now he can't do a thing with it...

As the boy was beginning to resemble the Wild Man Of Borneo, I girded my loins yesterday and informed him, in no uncertain terms, that it was time for a shave and a haircut (do feel free to shout 'two bits!' ). The consumption of chicken and pasta was not to happen until such sartorial processes had taken place. He went into an almighty sulk but grudgingly agreed. I emerged triumphant from the fray. I'd cut myself with the scissors, he'd sworn vilely at me (language not fit for channel 4) and the amount of removed hair would stuff a mattress. This took three hours! How Vidal Sassoon does it, I'll never know. He probably gets more cooperative clients.

After all that, in the afternoon, Jordan decided to shave his head because he wanted to look like Uncle Fester out of The Addams Family. Sigh.

Eye eye!

Jordan had an eye test (our first successful one in 17 years!) to investigate the possibility of hemianopia. They couldn't be absolutely conclusive because ordinarily eye drops to dilate the pupils would be the way to go. Owing to Jordan's predilection for screaming and hanging off light fittings at the drop of a hat, we decided not to go that route. It was refreshing to be treated by people who appreciated that Jordan wouldn't recognise letters, so symbols were used instead.

To cut a long story short, they thought that his vision was fine and that his head tilting was more due to his physical asymmetry.
Done and dusted by 11 am and then we got the hell out of Dodge.

"I'm back!"

...which is how our little soldier greeted us last Thursday as he emerged, bronzed and smiling from the coach.

His school were brilliant, as they had kept a diary and compiled photos of activities that the students undertook all the way along to bring home to parents.

Jordan swam, walked up the slopes of a volcano, made a new best friend, ate out in restaurants, haggled in markets, did indeed ride a camel and lie about on the beach. Now that's what I call a holiday!

It could be a function of his autism but he didn't miss us at all while he was there which is a good thing, I think. His father and I suffered far more from his absence. We went to Dublin for a couple of days. Time slows right down without the boy.

Woo-hoo!

No Stickler Syndrome, which is very good news, Just disintegrating humours, cataracts and delicate retinas. I've given up karate and bungee jumping, fortunately.

The boy is off on his school trip...

...to Lanzarote no less! Y viva Espana and all that. Now he's been away on school trips before but not abroad so I'm torn between pleasure that he really wants to go, and worry well, because I can. Mercifully his father and I are off to Dublin for a little break and quite frankly, a little Guinness. It's that or I lie weeping in Jordan's bed until he gets back.

I hope he sees the camels.

Blogging against Disablism

An e-mail from the excellent website hemihelp (about speech therapy provision) got me thinking today.

About the years of 'inclusion' advocated by Dame Mary Warnock which actually resulted (in this borough at least) in cutbacks, disorganisation and pupils with special needs left somewhat in the lurch as the LEA bickered about who was responsible for what on a statement of special needs and then not having the money to implement a lot of it anyway! Trying to eradicate the special schools and absorb all the dear little disabled children into mainstream minus resources, training or suitable access rates as disablism in my book.

Fortunately, Dame Mary herself had the good sense to retract and acknowledge that special schools will always have a place in education and that they should be promoted as centres of excellence and not embarrassing necessities.

Hurrah!

Jordan now has a definite diagnosis of Autistic Spectrum Disorder.

It's like finding the last piece of the jigsaw.

Dental Health Issues

Jordan went to the dentist and I'm pleased to tell you that it all went swimmingly. Jordan's dentist is a lovely compassionate woman who has a great rapport with her younger patients. So nice to go to an appointment which doesn't end with him hanging off the light fittings, howling.

BOWEN THERAPY

Jordan had a course of this last year. It relaxed his hemi arm and chilled him out generally.

You can find out more about it here.

CEREBRA

This website is one I hadn't come across before but seems well worth a look.

Woo-hoo!

So, not Scoliosis then, but apparently a small degree of Kyphosis. That's a hunched back to you. Jordan is quite happy with that as The Hunchback of Notre Dame is one of his favourite films.

This is NOT a Hypochondriacs' haven...

...oh no. I hereby declare that all conditions and disabilities hereby described on this site have been experienced by me or members of my immediate family or close friends. Which does make us all sound a bit tragic but actually we're just getting on with our lives just like 'normal' families. Right, disclaimers over.

Today's illness is labyrinthitis which Jordan's dad was pole-axed by last summer. He is now deaf in one ear and recovering his balance but it's a slow business. He also has raging tinnitus. Click here, here and indeed here for useful links.

Epilepsy

I almost forgot this! Jordan has grown out of his Petit Mal seizures which just goes to show that good things can happen too, along with unexpected diagnoses.

Check out the website here.

DEPRESSION

Lots of people experience it yet it seems to be the one state of mind that no-one really wants to admit to.

I found this excellent website which has loads of useful info and handy links. Also this really interesting article that speaks of depression having an evolutionary purpose.

Sigh...

...just when we were basking in the negative result on the Fragile-X testing, along comes a referral for Scoliosis. I'll get back to you.

Meningitis

Jordan's special needs derive from an attack of meningitis when he was a year old. I think awareness of the symptoms has got a lot better in recent years. So here is the link to the excellent Meningitis Trust.

Let the bells ring out.

Jordan took a bath by himself! First time ever. I was banished to the lower reaches of the house. I tell you it looked like the command deck of the Titanic by the time he'd finished.

If it's not one thing, it's another...

...as flu rages through the population, Jordan's lovely PA Thomas got an infection called Orbital Cellulitis, was hospitalised and nearly lost the sight in one eye. You can read about it here. Tom is better now and out of hospital, thank goodness.

And the good news is...

...that we don't have Fragile-X syndrome, which as you can imagine, we are pleased about. However other investigations continue to see if any other chromosomal abnormalities are present. Funnily enough, the search has shifted away from the boy to the possible cause of my own eye problems: namely STICKLER SYNDROME. There is an interesting website and support group here.

New Year resolution

Mine was to de-clutter the house by a third. Not just because the gradual accumulation of useless objects was driving me crazy but also because Jordan fell again before Christmas (in a non-clutter related mishap) and if the boy is to successfully negotiate his environment with a damaged limb then space must be made for grab bars and so forth.
I tried to find a good image related to de-cluttering but kept getting Feng Shui pictures. I don't think we want to go there.