Has He Always Been Like That?

Portrait

2011-03-31T10:06:00.000-07:00

Jordan's dad knows the artist Marc Quinn and recently commissioned him to do this poirtrait of Jordan. It's a photo-realist picture that measures about 3 feet by 4. We're knocked out by it!

At last.

2010-12-23T01:19:00.000-08:00

Good news!

Sanity has prevailed.
Steven Neary will be home for Christmas with his dad.

Hillingdon Council should hang its head in shame.

2010-12-07T05:34:00.000-08:00

Don't bother knocking on the door of Hillingdon Council and expect common sense and expertise knowldge to answer.

Apparently they don't have any. Oh, and that goes for respect for the human rights of those with autism.

Read the following link and weep. If you get a 404 message, it's the post on the Orwellian Present you should read.

When you're done weeping take a moment to sign the the petition.

For shame.

It's an outrage!

2010-11-10T04:13:00.000-08:00

Yes, you'd think the boy would know when he was well off...

Here he is in the embrace of his lovely PA, Honor, who has become a veritable lynchpin of the household. She accompanies Jordan to Surrey Docks Farm on a Monday to chase the chickens and fettle the ferrets.

Cutbacks

2010-11-02T08:11:00.000-07:00

Now I could be wrong, and I'm very happy to have my opinion disproved but I really feel that tolerance of, and provision for, people with disabilities and their familes and carers, is about to take a big whacking. This is due to current financial constraints. In a time of plenty, everyone is more than happy to empower disabled people and trumpet loudly when an autistic man is manipulated by so-called friends and killed by them, or be horrified when a mother and her disabled dughter die in horrific circumstances in a buirning car after decades of abuse from neighbours and indifference from the police but I wonder how much all this will fade away with the tightened budget now proposed by the current government? DLA mobility removed from those in long-term residential care, for example. Well, I suppose they don't wat to upset the normals do they, with their inconvenient demands to move about in society. Really, shame on the PM, you'd think he'd know!

I'm telling you now, all the advances disabled people have achieved in the last few years are about to fade away, slowly but surely. Fortunately disabled people are often a mouthy lot. They may not be able to get out and about (and for some, that freedom will be constrained still further) but they can use the internet. Over on Twitter @bendygirl is a locus for protest. I urge you to follow her and her #BofB campaign. Let's protect the hard-won rights that disabled people currently (I was going to say enjoy) but really, I mean NEED in order to live their lives in the way they choose.

That is all. Rant over.

New developments

2010-10-11T09:54:00.000-07:00

Well, Jordan has settled into college very well, I'm very pleased to say. In fact, I was the one sick with nerves and wittering inanely on his first day there, not to say completely unable to find my way out of the building once I'd dropped him off. Doh!

On Mondays he goes with his lovely PA Honor to Surrey Docks Farm to do a little animal husbandry. I commend it to your good selves as a cracking day out!

College!

2010-09-06T10:16:00.000-07:00

The boy starts on Wednesday! He's dead keen. I'm in a nervous state.

In other news, I applied for a Freedom Pass for him last November. After a mere ten months, it's here. Or rather the ominous-sounding Letter of Authorisation is here, after many phone calls and finally getting someone to intercede for me. Not that I'm ungrateful for the initiative, you understand, it's just very frustrating to keep ringing only to get no further down the line.

Now all I have to do is get the boy to a Post Office in person. It's one of the Places He No Longer Goes To, so shall attempt major bribe to get him in there.

Any road up...

2010-08-30T04:44:00.000-07:00

Well, would you look at that! No sooner have the blissful summer hols begun than they seem to be racing towards the inevitable end with considerable velocity. I had a week of overlap with my Tefl course and the first week of Jordan's hols which took some organising to get care arranged, but arranged it was and all seemed to go well. In fact, I was scarcely missed, which bothered me far more than it bothered Jordan. Then we had a week to pack then off to Wales for two weeks, which was fab, thanks for asking. No one had a prima donna tizzy, not even me, and I went on a steam train. Now, holidays are not restful in our family necessarily, as no one lies about on beaches reading Michael Crichton or gawd 'elp us, Dan Brown novels (which are burnt ceremoniously at the England/Wales border anyway). And thus we ruturn to a rather inclement August, even with London's micro-climate. Good heavens, I've even had the heating on! It's an outrage...

Jordan has the day well organised: French toast (his new culinary obsession) for brunch, lashings of hot tea, a go with MY iPhone, if you please, then off he goes on his iPad, which he manipulates like Tom Cruise in Minority Report. He adores YouTube and just the other day found one of his all-time faves, Heigh Ho from Snow White set to an animated film of lego characters which I present below for your viewing pleasure...

Updates and thoughts

2010-06-03T02:40:00.000-07:00

I am ashamed to see how long it is since I last blogged!

Any road up, the boy is doing extremely well. Speech and syntax coming along in leaps and bounds. He took part in a Globe production of Midsummer Night's Dream and lost his hat in Lanzarote on the school trip this year. We know this because we have the photographic evidence. It was a big deal to him as these things often are to a person with autism. In other news, he is definitely going to Lewisham College in September and has possibilities of work placements too. This week he has been working with his dad instead of being at home with me. Do I feel left out? Well yes, actually I do, thanks for asking, but that's my problem, not Jordan's.

Thanks for reading.

On My High Horse.

2010-01-11T10:16:00.000-08:00

I'm getting pretty fed up with people who, with the kindest of motives, are often to be heard saying 'how you must suffer/worry/wish it had never happened to you' etc., ad infinitum. Ad nauseum actually.

It's not that I'm rejecting the kindness/blindness of strangers but I really am up to here with the pessimism of the 'normals'. By which I mean that band, that happy band who either don't come across disabled people that much in the course of their daily lives (what sheltered lives they lead!) or if they do, immediately adopt that pitying attitude that assumes we sit about quietly martyred and suffering and waiting for social services to take up the slack.

I don't do martyrdom. Fearfully ageing, don't you know. I do having a laugh. I don't think anyone with neurotypical children must be living the life of Riley. No one is. I'm fortunate to have a close family and some good mates who are happy to rock up and be with Jordan when I need to go out. Strictly on the understanding (imposed by the boy) that they don't actually talk that much to him or cramp his style. I pay them too. Above the odds because I value their help. None of that minimum wage malarkey here thank you very much.

My disabled son is a delight. There I said it! He has exceeded every single one of my expectations. I'm really looking forward to the next decade with him.

And so, into 2010 my friends. Having a laugh, cracking jokes, getting annoyed occasionally. JUST LIKE THE NORMALS! Gosh, who'd have thought it..?

Out of the mouths...

2009-09-29T06:50:00.000-07:00

One of the many joys of living with a person on the autistic spectrum is the refreshingly frank way they say exactly what they think.

JORDAN: Egg, I'm not going to have sex with the cat.

ME: Well, that's good. Having sex with cats is against the law.

JORDAN: Yes, and the cat would burst.

Silence as we contemplate this image.

JORDAN: Egg, can you make a sound like a cat bursting?

Fancy that...

2009-09-21T09:02:00.000-07:00

Jordan is very much wedded to routine, which comes as no surprise to anyone who is familiar with autism, I'm sure. Though interestingly, he has allowed some alterations over the last few days which have surprised me.

We got to the dentists without too much fuss AND tried out the Gourmet Burger Kitchen in East Dulwich too - a first for us. Click the link for a voucher! This also went well as Jordan enjoyed his burger and admired the VW Van-style graphic art on the walls. Hats off to GBK for this. Most restaurant chain art is dull beyond belief.

Today, he has a day off school but actually consented to come with me to get passport pics done at the local chemists, Kristal Pharmacy (is there anything they don't sell? We found pasta in there today). Not only that but we went to the butcher's, the baker's but alas there is no candlestick maker down Nunhead Lane or we'd have gone there too, trust me. May not sound much but this break from routine is a huge step forward for the boy.

Back to school

2009-09-07T06:27:00.000-07:00

Yes, it's the end of the holidays. I often feel I am the only mother who really enjoys having the kids at home! What's not to love? We get up earlier than term time, wander round sipping coffee and chatting. I can write, the boy can chill. Most relaxing and indeed conducive to literary inspiration. The house is now MUCH too quiet...

It's the holidays...

2009-08-03T06:32:00.001-07:00

Yes, indeed. I do love the hols. Ironically we all get up much earlier than we would do in term time. I asked Jordan what he had planned and he replied 'I'm going to watch videos and then relax' Talk about multi-tasking. Working from home, this frenzied activity is not at all stressful to manage and quite often, I find myself next to Jordan as I write. At the minute he is watching his new obsession Mr Bean and developing a very fine impersonation of his catchphrases, if I say so myself.

In other news, the search for chromosomal definition continues. It turns out that there is extra material on chromosome 9 but we are no nearer any kind of definitive diagnosis for its significance for Jordan. Oh well.

Happy holidays all.

He's back!

2009-06-16T10:57:00.000-07:00

Yes, the boy has returned. He had a great time. He reported that girls in bikinis were not much in evidence. Possibly because the clubbers are up all night and asleep all day. He talks a lot about having a girlfriend but as I said to his neurotypical sister, he may have to leave the house once in a while to find one...

Still waiting on results of blood tests for possible genetic conditions. In one sense, it doesn't make a whole heap of difference. Nothing alters in Jordan's educational provision or his daily life. I suppose it's one more piece of the jigsaw.

It's too quiet

2009-05-13T07:22:00.001-07:00

Yes, the boy has departed for sunnier climes. See post below. It's far too quiet in the house.

Jordan was ecstatic to be going. I think it's weird that he's going but think it's a good thing. It will challenge him to be more independent. I'm not even convinced that he thinks about us that much when he's away; his autism means he lives very much in the moment and deals with the here and now.

The person who is really suffering is his father who hates it when his son is away.

Off on his hols

2009-04-28T02:39:00.000-07:00

Yes, it's that time of year and the boy is off on the annual school trip. last year it was Lanzarote, this year Ayia Napa, if you please! Electra Village to be precise. Reviews and photos here The school have been before and always had a good time. I won't be able to stand the silence so I'm off to Wales to see my mum. Jordan looked most put out. He clearly expected me to be weeping in a darkened room until his return...

Impersonations

2009-03-27T05:29:00.000-07:00

Jordan is currently developing several impersonations which is interesting as he has always had problems with expressive speech. Maybe repeating certain well worn favourite phrases bypasses the usual linguistic pathways.

His three voices of choice are Cartman, Jimmy and Timmy all from the mighty South Park. Crude? Oh yes. Staggeringly offensive? I should hope so. NO ONE is spared. Some of the best characters (with disabilties) that we've seen in a very long time? Why else would we be watching...

The lads

2009-03-24T07:03:00.000-07:00

So anyway, I was at a coffee morning at Jordan's school yesterday to have a look at their shopping and independence photos.
Sure enough Jordan spent the entire time trying to trick me into saying the word 'arse'. Sigh.

Here is a pic of him and his best mate Luke.

Aimee Mullins

2009-03-18T05:11:00.000-07:00

Chromosome 9

2009-03-03T08:59:00.000-08:00

Well, the plot, as they say, thickens!

Ongoing genetic testing has revealed that Jordan has extra material on Chromosome 9.
Testing continues and we should know more in a couple of months. Looking it up on the web revealed this could be the cause of Jordan's developmental delay! Blimey! Not the meningitis then.

'Other changes in the structure or number of copies of chromosome 9 can have a variety of effects. Intellectual disability, delayed development, distinctive facial features, and an unusual head shape are common features. Changes to chromosome 9 include an extra piece of the chromosome in each cell (partial trisomy), a missing segment of the chromosome in each cell (partial monosomy), and a circular structure called a ring chromosome 9. A ring chromosome occurs when both ends of a broken chromosome are reunited. Rearrangements (translocations) of genetic material between chromosome 9 and other chromosomes can also lead to extra or missing chromosome segments.'

Annual review

2009-02-26T05:32:00.001-08:00

Today was Jordan's annual review. As I've blogged previously the next couple of years are crucial as they are concerned mainly with transition. Jordan's statement of special educational needs ceases and his funding passes to Adult services. I've heard many bad reports of how help falls away when the disabled young person becomes an adult. I certainly had the impression from the Connexions representative that she would work flat-out to prevent the support from breaking down during this process.

Anyway, it all went very well. The school is pleased with Jordan's progress. His father and I find him a delight. Jordan came to the review from his careers lesson where they were exploring road construction as a job. Nothing like a bit of role play! Jordan said he does want to go to college, that food tech was his favourite subject and he would like to make pizzas for a living. The Connexions rep said that there were various organisations such as Remploy, Bede and Toucan who support the disabled young person in job placement, which was very heartening to hear.

And that's the funny thing, as a parent I've always kept my ear to the ground and picked up all sorts of information over the years. Apart from Contact-A-Family, is there a one-stop-shop for all info relating to the raising of a child with disabilities?

Narrow-minded parents scare mother of disabled son...

2009-02-25T06:39:00.000-08:00

There's been a right to-do about Cerrie who presents CBeebies because she's missing part of her lower arm. My lovely three-year-old niece was born without her right hand. Whilst playing in a ball pool over the Christmas hols (watched by her grandma), she was surrounded by other little kids who had a good look at her affected arm. In response to their questions, my niece replied "It's alright, it no hurt!" whereupon they all ran off to play together.

And that's all I have to say about that.

Good day to you.

Leaving school

2009-01-30T08:49:00.000-08:00

Jordan has the rest of this academic year plus one more then he is hopefully off to Lewisham College.

I had a good chat with a lady from Connexions who is there to support us through the process, which is a relief. Fortunately Jordan will go with two fellow students, one of whom is his best mate at school. So, more relief! In their final year, they will do a link with Lewisham College one day a week to help the transition. It's all looking good on paper.

He is 18 on Monday and appears to be growing a beard! I don't know where the years have gone, seriously.

Ooh what a kerfuffle!

2008-12-12T08:05:00.000-08:00

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

2008-11-25T09:56:00.000-08:00

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

2008-11-24T03:43:00.000-08:00

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!

2008-11-17T11:42:00.000-08:00

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

2008-11-04T07:07:00.000-08:00

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!

2008-11-04T04:27:00.001-08:00

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

2008-10-27T03:26:00.000-07:00

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

2008-09-30T05:34:00.000-07:00

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

2008-09-25T06:40:00.000-07:00

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...

2008-09-19T07:33:00.000-07:00

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

You know you want to...

Collaboration

2008-08-20T04:07:00.000-07:00

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...

2008-08-12T04:26:00.000-07:00

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

2008-08-04T04:35:00.000-07:00

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!

2008-07-21T04:30:00.000-07:00

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

2008-07-08T08:03:00.000-07:00

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

2008-07-05T04:22:00.000-07:00

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

2008-06-26T06:30:00.000-07:00

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...

2008-06-23T05:07:00.000-07:00

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!

2008-06-02T05:48:00.000-07:00

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!"

2008-05-26T05:24:00.000-07:00

...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!

2008-05-16T04:23:00.000-07:00

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...

2008-05-08T04:20:00.000-07:00

...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

2008-05-01T09:03:00.000-07:00

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!

2008-04-29T07:00:00.000-07:00

Jordan now has a definite diagnosis of Autistic Spectrum Disorder.

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

Dental Health Issues

2008-04-09T07:09:00.000-07:00

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

2008-04-04T09:42:00.001-07:00

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

2008-03-23T10:30:00.000-07:00

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

Woo-hoo!

2008-03-06T07:54:00.000-08:00

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...

2008-02-24T06:06:00.000-08:00

...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

2008-02-22T05:53:00.000-08:00

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

2008-02-19T03:33:00.001-08:00

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...

2008-02-06T06:37:00.000-08:00

...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

2008-01-22T07:19:00.000-08:00

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.

2008-01-17T09:07:00.000-08:00

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...

2008-01-16T06:55:00.000-08:00

...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...

2008-01-14T03:10:00.000-08:00

...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

2008-01-03T05:15:00.000-08:00

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.

Fragile X

2007-12-28T07:13:00.000-08:00

Interesting article on a potential cure.

HAPPY NEW YEAR

2007-12-21T02:09:00.000-08:00

Autism

2007-12-13T08:39:00.000-08:00

We are hoping that a possible diagnose of Fragile-X might account for Jordan's autistic traits. Here is the National Autistic Society's website which I haven't had a chance to explore yet but I will. Oh yes.

OUCH! It's a disability thing...

2007-12-11T05:47:00.000-08:00

I get their e-mails. I laugh and sometimes I cry (with rage, that is). Fans of disability stereotypes need not apply.

INDIA KNIGHT...

2007-12-11T02:36:00.000-08:00

...has an excellent blog over at Times Online. Mouthy? Opinionated? You bet.

Contact-a-Family

2007-12-10T05:08:00.000-08:00

We joined this branch of the organisation whilst it was in its infancy in Southwark. It was a relief to go to functions, meetings, days out and pantos and NOT feel like your family was the only one affected by disability. I haven't been for ages but the website is excellent.

MENCAP

2007-12-07T09:58:00.000-08:00

I've only just come to the website as Jordan has got older. They have a really useful advice section. I was desperate for a strategy to help Jordan cope with bereavement and found it here (The Makaton Vocabulary Development Project has an excellent brochure on this subject too).

What a week that was...

2007-12-07T08:06:00.000-08:00

the day after we saw the geneticist, Jordan had a nasty fall on his hemiplegic leg in the bathroom. The following morning he couldn't walk at all so we called an ambulance. He has reduced sensation in that leg and is pretty stoic where pain is concerned. However, just because he can put up with a lot of pain doesn't mean that he should. So, off to casualty where I must say everybody was very good to the boy. Certainly no 'does he take sugar?' attitudes. He had an x-ray to confirm that nothing was actually broken and home we came. He's been sleeping downstairs and scooting about on a swivel chair for a week. Today he started walking again - hoorah! I don't mind telling you, I shed a tear. I don't know if anyone else has felt this but when your disabled child goes down for the count, you do tend to fear the worst, or I do, anyway.

HEMIHELP

2007-12-07T01:25:00.000-08:00

This is an excellent site devoted to all issues relating to hemiplegia. I simply cannot recommend it too highly.

FRAGILE-X SYNDROME

2007-12-03T06:07:00.000-08:00

We saw a geneticist at Guy's Hospital on Friday who took a detailed family tree and felt there was enough evidence to make a blood test worth doing on Jordan. Now it must be said that when there is blood to be taken Jordan is usually the one clinging to the light fittings and screaming but between his father and two doctors Jordan had blood taken! He certainly didn't like it but it is for the greater good...

Check the link on the left for more details of the syndrome.

UPDATE: Excellent support group courtesy of FRAXA with thanks to Sally.

MAKATON

2007-11-28T07:33:00.000-08:00

is a very useful system of language support. When I have used it with my son, it slows my speech down to a mnageable speed for him to assimilate and I only sign the key info. Despite anything well-meaning people tell you, as in 'Why are you teaching him another language?" - you're not. You are reinforcing spoken language. You speak and sign. Even if your child has no speech, signing and speaking to them keeps the linguistic pathways open in the brain until the child says their first words and even if they never do, they can still communicate with you.

HELLO...

2007-11-22T08:32:00.000-08:00

...and welcome to the blog.

I'll post links that I've found helpful.

If anyone finds anything that's helped them, let me know and I'll add it to the list.

Any organisation ticked you off on a disability-related matter? Here's the place to sound off.