The Iron Chicken

almost an update of sorts

2011-11-02T10:07:00.002+02:00

milk - can't live without it

new iPad :)

new ball, a proper one. So far only nearly broke nose once...

tween years - go away mum.

finally...a wheelchair (there are ups and downs to this)

this is what the cat thinks of current Greek crisis....

Another One Bites the Dust

2011-03-23T07:53:00.000+02:00

So, last night, there I was somewhat hopefully drying an mp3 player with the hairdryer. Yes, well, that didn't work. Dimitri had rather nonchalantly dropped it into the (full of water) bathtub as he passed by. I was not so nonchalant as I said "well that's the last one your getting" (10th?, 11th?). Dimitri frowned and pulled a sad face. This morning he was positively cross when, after his request, I said it was broken. Luckily he was assuaged with a croissant.

Last Friday when I met up with Kristina, she had mentioned getting a waterproof case for the iPad(?), I guess should have been paying more attention. Although it's not the first mp3 player that's met with a watery end (and at least it wasn't the toilet), I was starting to think we had passed that stage. So it goes.

This may be of interest to some, there are now keyguards for the iPad, specific to some AAC programs, you can find the info at Teaching Learners with Multiple Special Needs.

This morning when I got up I nearly fell over sideways. I've reached that age where you need to sit for a minute after waking before attempting anything more daring. I also woke up with books about UFOs merrily buzzing away in my head, which is probably meaningless to most people, but possibly means I need to go and fight of my mid-life crisis with a big stick. So it goes.

March Hares.

2011-03-11T13:36:00.000+02:00

I took this photo on Tuesday (I think?), Dimitri was home from school. The weather had become cold and snowy over the weekend, and on Monday, (which was a bank holiday "Clean Monday" the beginning of lent) the school secretary called us to ask how the weather was where we were and if Dimitri would be going to school on Tuesday. As the brief snow flurries in Athens weren't much to talk about, not much problem for us, but it also turned out his teacher had headed out of Athens for the break and was stuck, somewhere...So Tuesday (and Wednesday) Dimitri stayed home and watched the snow flurries with fascination. We briefly tried checking out the snowflakes from the street, but Dimitri wrinkled up his nose and closed his eyes tight shut so we quickly turned back home Fascinating from the window was fine enough. Dimitri was positioned at the living room window, the cat at the kitchen window, both watching. I watched them watching.

The night before the winds had been extremely strong, and the noise from the awnings around the balcony kept us all awake pretty much all night long. In the morning Christos ventured out and rolled them all up (a bit closing the barn door after the horse has bolted I might say). They are hardly ever rolled up. Partly because we are lazy and partly because I prefer the half light. It softens the world and creates warm shadows were I feel more...at home. The harsh bright sun that is currently beaming in reveals all the dusty corners, cracks, smudges on the walls, carpets fraying at the edges. In the bright light of day you can see where things are starting to fall apart.

I'm still listening to Husker Du, when Dimitri allows me to take the REM CD out of the player that is (Shiny Happy People is his favourite). I saw both Husker Du and Rem in Liverpool (not at the same time), 25 years ago. I had to double check the figure, it didn't seem quite right. It's almost as shocking as hearing a teenager refer to 1980's clothing as "vintage".

Whatever. March seems like a good month for listening to loud music and "jumping vertically for seemingly no reason"

I'm in the Mood For

2011-02-24T12:24:00.000+02:00

Husker Du

Not that I'm feeling pissed off or anything.

2011-02-22T09:50:00.001+02:00

This video is in Greek but I think you get the idea from watching the first minute. The rest is bullshit "reportage" talking to people from KEPEP Lechaina and the current health minister. Blah blah blah. Nothing of note will come of this latest "revelation" (google KEPEP Lechaina, it's been in the news repeatedly for years but nothing changes).
KEPEP - Centre for Child Care....
The centre is for children with "severe/profound intellectual disability and or multiple disabilities"
77 people - 70 adults 7 children (oldest 43)
The adults arrived as children.
30 people have died since it started working in 1988.

13 nursing staff ,4 therapists.
1 speech therapist
1 physical therapist
2 occupational therapist

The people are restrained to "protect them from themselves". blah blah blah blah blah.
The health minister has given an order to allow reporters in to all the institutions in Greece. Well done. I'm sure that will help.
And he is sending 5 extra nursing staff (should have sent by now that is), and another 3 in the "close" future.
His words, the problematic situation will improve, but not be solved.
Elli Stai, our intrepid reported refers to the people repeatedly as "plasmata" i.e. creatures.

A volunteer physical therapists from the UK spoke to one news paper, the Google translate is not great but if you have the stomach for it you can read it here

Some people are now saying how they believe it's wrong for the Greek Government to give money towards the Special Olympics which will be hosted in Athens this year whilst this situation continues in KEPEP Lechaina. I don't think the money has anything to do with it, the same people were restrained in there beds whilst money was spent on the Olympics the Para Olympics and countless other projects which we could all survive without. Why pick on people who wish to take part in the Special Olympics. I object to the government using the Special Olympics to give itself an image of "sensitivity" towards people with intellectual disability which is clearly doesn't possess. And it's not just this particular government, all the parties are the same. They just use Lechaina as ammunition to bicker amongst themselves.

On this subject, see you same time same place next year.

Technical Error

2011-02-15T08:57:00.000+02:00

My latest blog post is, due to a fuzzy head, over at The Artistic Chicken

In the meantime, heres some music

Eleven

2011-02-08T07:41:00.000+02:00

Oh!! Here we are again, another Birthday!!! Dimitri had more motivation today to wake up as I cunningly used his birthday present as bait. The pictures are a little blurry, it was 5.40 in the morning after all.(present - a Buzz Lightyear which I had panned to get Dimitri for Christmas - better late than never)

It's now 7am, it was around 7am when Dimitri finally made an appearance 11 years ago, 24hrs after my waters broke, a week after his due date (Dimitri takes after me maybe - better late than never).

I have to say, I'm not one of those women who found the whole labour/giving birth experience wonderful. It didn't help that I vomited on a midwife (never give me anesthetic by gas, I'm warning you) and the doctor was obnoxious. He said I wasn't pushing hard enough because I been given too much drugs....

After about 23hrs of contractions - starting, stopping, being restarted artificially, he said if the baby wasn't out in the next hour or so I would be having a c-section. Before this moment though, it was decided to be worth trying turning Dimitri's head so he was in a better position (crown of head first instead of forehead). He was turned, and there you go, one push and he was out! Not pushing hard enough my ass.

Dimitri was flopped on to my belly where he didn't move or cry, was taken away, and given back a few of minutes later with the unsettling comment "he didn't need oxygen, he started breathing by himself" (the umbilical cord had been round his neck). The Doctor, still busy doing stitches or whatever, handed to the midwife the instrument he had, minutes before been using to cut a rather sensitive area of my body, with the comment "take these to be sharpened, there blunt"....

Birth stories.

But that was just the beginning of the story, the best parts come later.

Wednesday Whitterings

2011-02-03T09:52:00.000+02:00

On Saturday my husband said to me "we need to think about moving to England", I said "yes! we need to move before Dimitri is 14!".

Then I woke up.

The feeling of excitement and relief was replaced with - not much to be honest. I used to be much more enthusiastic about change being possible, now, I'm taking the "bury your head in the sand" attitude. I wonder if there is a government policy entitled "wear parents down with red tape and bullshit until they give up and fade away into the background"? I feel like I'm fading.

Is my belief that "things in the UK" would be better(for Dimitri) unfounded? Hum, don't think so, but maybe that is just a foreigners view of "things in Greece".
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On Sunday we went to the party held by Noesi, the internet hub in Greek for all things pertaining to children with disabilities. It was created by Aggelos Koutoumanos, and I, like many other parents I'm sure, am grateful to him for providing central place for information and a place for parents to meet, which was nigh on impossible to find otherwise.

I managed to meet up with Marilena who I haven't seen for ages (briefly saw Riko who was very busy in the ball pit) and met Poppy, her husband and two beautiful daughters for the first time in person! As it turned out though, Dimitri was feeling less than social, he is not keen on sharing his ~~toys~~ ~~resources~~ parents, and took turns dragging either me or hubby away from the action to a quiet corner where he was happy to sit with his iPod.

A couple of weeks ago I got the Understanding and Changing Behaviour in Angelman Syndrome interactive dvd (I don't like the interactive dvd style by the way, and the videos won't open with Google Chrome, but do with internet explorer). This kind of excessive attachment was mentioned as being frequent in Angelman Syndrome. As shown on the videos, if two people are chatting and ignore the third person with AS, you are likely to get your hair pulled or some such thing. I probably don't have to tell this to other parents of kids with Angelman syndrome.....

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I was looking up where to buy a book entitled "Developing and Using a Communication Book", cos' you know, after 8 yrs of having a communication book for Dimitri, it's probably about time it was laid out in a more functional manner, instead of the random scattering of laminated velcro-ed pics.

In my search I came across the site Inclusive Technology where I also happened to see this
the Inclusive Slate!

Tablet pc with Windows 7.

I wish I'd seen it before, it would have saved me a lot of time surfing the web for a tablet pc that works with Windows 7. I can't see any particular brand name on it, so no reviews available of how well it functions or how sturdy it is, but looks like I could put The Grid 2 (communication software available in Greek) on it. The other option I had been looking at was the HP slate 500 (not available just yet - here at least). HP Touch Smart computers have been used successfully in schools in the US, I'm assuming they work out cheaper than some other touch screen computers which are used in special education? (check these computers at Inclusive Technology).

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Well, that's enough waffling for one day.

Monday Morning Mumbling

2011-01-17T08:28:00.001+02:00

School days, I wake Dimitri in the mornings by turning on the bedside light and saying a few "good mornings" and "hey theres". Usually that doesn't work, so after leaving him for a few minutes I start pulling back the covers, I have to pull them off the bed completely or Dimitri will just pull them back over his head again.

If you have to help your child get in the bed the right way round, get out of the bed the right way round, or make sure they are covered with the blankets and duvets properly, don't give up hope for your child learning these things just yet. Dimitri learned all these things much later than would be usual. But we got there. Now the problem is prising the duvet out of his hands (and of course, Dimitri didn't sleep that much when younger, those days, going to sleep was the problem, not getting up)

He does need help getting to the bathroom and getting dressed, and he is always a bit stiffer and slower in the mornings (do I need to say so am I?). This takes quite some persuasion. Sometimes, after the above, pre-getting-up routine, Dimitri will lie face down on the mattress and grip the sides of the mattress. Trying to get him off would be like trying to prise a limpet off a rock - so I go drink some more coffee... Usually he gets up at this point, we have to be quick to get him to go to the bathroom before he rushes into the living room otherwise it's very hard to persuade him to use the toilet.

This morning Dimitri was sleeping lying on his back with his arms thrown up over his head. From the tips of his fingers to the elbows his hands felt like ice. Every night I try and tuck his hands in the bed, even in his sleep his will pull his arms out again in a slightly irritated manner. It doesn't seem to bother Dimitri that his hands are freezing. It bothers me. I'll be attempting to tuck his hands under the covers tonight as usual.

The first day Dimitri wore the above new ~~jumper~~ pullover, he kept point too his chest and looking up at me with a slight smile. "yes, new jumper" (pullover, I meant to write pullover*) I would say. I don't know if he is trying to say he likes the pullover, doesn't like the pullover, is observing that it's new or whatever. I like to think he is saying he likes it. Well I did chose it after all. What are the young folk wearing these days? I need lessons in "what's cool for kids to wear".

cat with mud

wet pissed off cat

still wet cat

dry but still pissed off cat

dry sleepy cat

So we heard the cat fighting outside, 30 seconds later it runs in covered in mud. It needs lessons in self defense. I washed it. It wasn't happy.

*pullover in Greek is..... pullover, only spelt** funny . You would think as it's the same in both English and Greek there would be no problem, but I'm stuck with using the word jumper out of habit.

** spelt or spelled? Spell check doesn't like spelt.

Post Christmas Anxiety

2011-01-10T10:43:00.000+02:00

We set the alarm for 5.30am in preparation for Dimitri's first day back at school after Christmas and new year. He woke up at 5am coughing, as he has been doing for the past week, but got up chipper and smiling. He got dressed (with help) ate a few spoonfuls of porridge and took his meds (with coercion). Although he was not over keen on going downstairs to meet the school bus, school, apparently was not in his plans.

After Dimitri was off on his way, I sat down at the computer to check my neglected e-mails blogs and forums. I suddenly felt like I was having a panic attack. Where to start?? Really I shouldn't be starting at the computer at all, but 6.30am is an anti-social time to be getting the vacuum out to make a start on the 2wk, 24hr a day attack Dimitri has made on every room in the house. And that Play Doh probably isn't going to come out of the carpet anyway. And what about all those months of receipts that need sorting out for the tax forms??? Shopping? Ironing? Long list of appointments for various doctors and dentists?

I had been thinking to myself that after the 2wks of Dimitri being at home, the second week of which we were both sick and were pretty much stuck in the house, that I would be feeling a little more relaxed being able to do things at a casual pace today without having to do the "constant vigilance" thing.

The shocking revelation is that even though I never seem to be doing that much, is that there are always, always things that need doing. Bah humbug. And no matter what I'm doing it never seems to be enough, or rather, substantial, as in being able to say "hey I did/achieved this, that or the other today". It's all a bit, well, flimsy really, especially as other people do this stuff and work (paid work that is).

Conclusion -I find being a SAHM difficult (you have no idea how long it was before I realised SAHM was an acronym for stay at home mum). May be I should blame society for undermining the role of mothers.

Whilst me and my buddy (who was increasingly becoming something of a despot over the vacation) were glued together making things out of play doh etc, I was thinking to myself that "I really need to do something this year". Which is exactly what I thought last year. And the year before that and the ye... et cetera and so forth. Double bah humbug.

I need to say something about Dimitri being a "despot" but will save it for another day, today I'm doing the "me" thing.

A taste of Christmas in pictures:

slacking about on the sofa

inclusion of table and chair for Barbara and Dimitris PT ;)

the Christmas tree which remained upright for the duration of the holidays

the dreaded play doh

tips for removing ply doh from carpet welcomed

electrical circuit toy for Christmas

lasted 10days before Dimitri (who was moving things all over the house) sat on it

bah humbug

Senbazuru (two posts in one day!!)

2010-12-23T09:09:00.000+02:00

Some time ago (good grief it was November, I've lost all sense of time) Elizabeth wrote a post A Thousand Paper Cranes, I kept it in the back of my thoughts with the intention of folding one or two when I remembered. I finally remembered!!

I was very pleased with my self...

I had actually made more, but my husband, bless him, was in a strop whilst unable to find something or other (car keys, phone, wallet?) and decided to clear the table (something he generally doesn't do unless in a strop) somewhat aggressively... I'm used to this kind of thing. Every time I buy interesting looking fruit to draw, he eats it. Strange man.

Senbazuru "There is a legend which says that folding a thousand origami cranes will make a wish, like for example long life or recovery from illness or injury, come true."

For all my friends, a few cranes. Who knows, by this time next year I may have made a thousand (if my husband doesn't keep clearing the table)

Wishing you all a Happy Christmas (if you celebrate it!) and a wonderful New Year. Good health to you all.

Not a Particularly Seasonal Post

2010-12-23T08:46:00.000+02:00

The Doldrums - The Doldrums is the region of calm winds, centered slightly north of the equator and between the two belts of trade winds, which meet there and neutralize each other.

In the Doldrums - In low spirits, feeling dull or drowsy.

Harrumph....

the wind has gone from my sails?

Well that's enough feeling sorry for myself for one day I think. Life is tootling along, just checked my last post, I see the supermarket was mentioned... In a small twist of fate something similar happened yesterday (well, a repeat performance really). There are two supermarkets where I live, practically next to each other. One, I have decided, is always cause of great stress and consternation - mostly mine.

Although Dimitri is prone to being overstimulated easily, which can cause him distress, in this supermarket, there seems to be a lot more stubborn as the proverbial mule going on...I'm assuming this from the amazingly quick recovery Dimitri makes, followed by continuing stubbornness as in - "I'm not moving uh-uh so there and there is absolutely nothing you can do about it" attitude. Also this is not the "friendly" supermarket and I'm getting tired of being looked at askance. So I think it's time to do a self imposed exile from the place, Dimitri won't be happy as it's the bigger of the two supermarkets on two floors and has an elevator....and toys....and dvd's....I'll be planning detour routes in advance.

It's Dimitri's last day of school today before the hols, two whole weeks of not getting up at 5.30 in the morning - hooray!! (assuming Dimitri sleeps in that is).

Dimitri + Marble run

Notes for November

2010-11-29T09:13:00.000+02:00

you looking at me?

(in no particular order)

Husband sneezes, Dimitri takes a tissue from the kitchen table and attempts to wipe his (dads)nose. Thank you!

For 4 days Dimitri was more involved with getting dressed. Rather than just pulling trousers up from knees (or ignoring me completely or rolling around on the floor...), took a hold of trousers by waistband with one hand, put one foot in, exchanged waistband to other hand, put other foot in, pulled them up! Rather than just position head and arms while I put his pullover on, took pullover with both hands and pulled it over his head and found the sleeves. Of course it didn't last, back to passive or completely uncooperative. However, "All of this has happened before, and it will allhappen again." (Peter Pan or Battlestar Galactica take your pick).

Look2Learn on the iPod was deleted. Again. Spent several hours reinstalling and editing.

Husband eating dinner, Dimitri running back and forth from kitchen to living room. Dimitri stops at the bread bin, takes a piece of bread and gives it to husband to eat with dinner. Thank you!

New eat-in-take-out macaroni place in Peristeri. The staff know us already.

Small incident inside and outside supermarket. The lying on the floor outside was a bit much, hurt my back (better now but a bit dodgy)

Really? Puberty. Already? Whilst I'm there, (ehem theoretically),(mentally prepared that is), for puberty, sexuality, adult life and all that, is it really necessary for puberty to start early?

Despicable Me trailer has been watched - a zillion times - on YouTube. Will be going to cinema shortly.

Should we go and see Stomp? (Remembering success of the Kodo Drummers)

DVD's and books ordered from Amazon for Christmas, Buzz Lightyear to be aquired later (this week?).

Painting progress report - ........................................ ah, yes well.

Still Here

2010-10-22T09:10:00.000+03:00

View from the roof yesterday evening

Still here but been kind of occupied (supposedly being creative painting - but that's another story). But just to prove we are still here, a couple of photos of Dimitri on the roof.

For some reason Dimitri always seems to be wearing the Spiderman t-shirt in photos. He does have other clothes I assure you and he does wear them. Just not when in photos apparently. Fun game - "kissing" the plastic awning thing (yes, he does sometimes "draw pictures" with saliva. Is it bad to mention this?)

Still sorting through the AAC and VOCA info, found out the Grid 2 in Greek is around 500 euros (booh!).

One day last week Dimitri got home from school as per usual. Usually I have food ready prepared as he comes home pretty hungry, but as lunch was to be an "egg in a basket" there was a little waiting to be done.

Not happy to wait, Dimitri got his school bag, opened it up with a little assistance, found his iPod, and using the newly added app "Tap to Talk" that I'm trying out, said "I'm hungry"! A new phrase for Dimitri, for whom "I want" followed by item required is the usual means of communication. He may not actually know the phrase I'm hungry, but used it as it automatically leads to food items, but even so, the "train of events" leading to the food items provides modelling of the appropriate use of phrase, no? This is the app which requires a years subscription to be able to have access to more phrases and make alterations. I'm still considering, as it does run nicely from one phrase to a selection of following phrases or words. But in the end I'm not sure if a more complex program can be adapted better to suit his needs. One thing is for sure, he is more than ready for more phrase and word choices.

AAC, Hardware, Software, Operating System (I'm too old for this)

2010-10-13T09:55:00.001+03:00

AAC Augmentative and alternative communication

"Augmentative and alternative communication (AAC): 1) The supplementation or replacement of natural speech and/or writing using aided and/or unaided symbols...The use of aided symbols requires a transmission device. 2) The field or area of clinical/educational practice to improve the communication skills of individuals with little or no functional speech."
(Lloyd, L.L., Fuller, D.R., & Arvidson, H.H. (1997) Augmentative and Alternative Communication: A handbook of principles and practices. Boston: Allyn and Bacon. pg 524)

Hardware - the physical device

Software - the AAC program you want to use

Operating System - the intermediary between the physical device and the (AAC)software you want to run

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Okay, this isn't what I was intending to write, I was hoping to write a short list of apps for the iPod or iPad which work in Greek (or other languages), but after some googling and chatting with Christos I now have a worse headache than yesterday and need to write things down in basic steps. This old dog doesn't learn new tricks easily.

The recent flurry of excitement in AAC is largely, completely, due to the release of the iPod and iPad, in conjunction with AAC software that will work on it. It's a cheap touch screen device. The quality and complexity of software available varies as does price.

Proloquo2go - $189.99 (139.99 euros)

Look2Learn -$24.99

Tap to Talk - basic app is free (I'd call it a free trial personally, there are not many phrases or choices), but, to create your own library you buy an on line yearly subscription for $99.95. It was originally designed to work on Nintendo by the way (and still does)

There is a run down of apps at TLMSN, it was written last year so there have been some changes and additions, one to note is possibly Sounding Board which is from Ablenet, an assistive tech company.

So back to my problem, finding something that works in Greek, well, it's a small market, there are no apps for iPod available with a prerecorded Greek voice, so forget that idea. Some apps have a voice recording options so you can laboriously change all the spoken words to Greek, which is what we have been doing.

The most complex and flexible app, Proloquo2go, is only available in English, and does not have a record your own voice option. It may be available in other languages eventually but unlikely to be Greek. They are not developing it for other operating systems.

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So back to why we all want an iPod, it's a cheap touch screen with apps for AAC (that are also relatively cheap). But what you pay for is what you get. Also, you know, I like the iPod, it looks nice.

You can do the same thing with an Android if you have the apps, but as it has a different operating system you can't use apps for iPod and vice versa unless they have been developed to do so. (this is probably really basic stuff to most people but I'm old. And a Luddite).

Voice4u works on both.

Cheap touch screen, software that works with operating system.

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Dedicated devices.

Yesterday, during my googling phase I saw the new Dynavox and started drooling (even though computers aren't my thing)

The Dynavox Maestro is cool. I want one. I mean Dimitri needs one. Fat chance, no price tag on the website, I know it's in the 1000's.

So what is it. An expensive touch screen, with a few specifically adapted features, that runs on a Microsoft operating system. Plus software that runs on a Microsoft operating system.

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Software

Boardmaker has been developed for both Microsoft and Mac (but I believe the OS for a mac pc and the iPad are different, no? So it runs on a Mac pc but not iPad - and still waiting for Mac tablet computer). It cost $749 -$865

The Grid 2 as far as I know works on Windows. Cost 360gpd $570(?)

The Grid 2 is the only software which has been partially translated into Greek

Languages available here. Sorry, I don't know what languages Boardmaker and other software are available in, too tired to Google any more.

There are other software options available, these are just two. Just giving an idea of cost.

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So given that the Grid 2 is the only option for a more complex AAC software in Greek, I just need to find a hardware it will work on.

Dedicated device from Zygos with the Grid 2 costs $4250. Hardware on it's own $2650. EH?(and the Zygos operating system is an old Microsoft XP or some such thing)

or I could just wait for new touch screen tech to become available and add the software myself?

Asus Eee pad $409.00 from Amazon

The Grid 2 $570

Total $979

iPad from $499

proloquo2go $189.99

total $688.99

iPod from $229

look2learn $24.99

voice4u $29.99

stories2learn $13.99

(plus whatever future purchases in ever increasing number of small apps which turn out to be, sometimes useful to a degree, and sometimes useless.)

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Ah.... still confused.

Cooking with Augmentative and Alternative Confusion

2010-10-12T12:05:00.000+03:00

I just found myself whisking up a cheese sauce (for macaroni with courgettes and carrots to be cooked in oven disguised with said cheese sauce to look vegetable free) with an energy and fury which I have to say my cooking doesn't usually possess. And I forgot about the macaroni, wandered off while it was boiling and discovered it some 20mins later looking rather soggy. At least the pan wasn't destroyed this time. I'm becoming very absent minded.

What was I talking about?

Ah yes. The energy and fury. My son is non-verbal. That is, he does not speak. He has trouble communicating. He doesn't/can't sign. His receptive language in better than expressive. He has trouble expressing himself..

We started using Pecs with Dimitri many years ago, and it was helpful, to a point. The possibilities of PECS and other such laminated icons for communication, are limited for Dimitri. You can only get so far before getting annoyed if you also have problems with movement and co-ordination. And it's slow. And not as portable as one would like. And lamented icons only survive so many dunkings into the bath/sink/toilet. And you end up with pictures velcro-ed to yourself or the carpet. And retrieving them from under the cushions/sofa/bed is not good for my back. And I keep forgetting where I've put the spare pictures.

So obviously all this new fangled technology starts to look good. Opening the horizons and all that. Maybe Dimitri would have much more to say given the right device? Maybe it would just help him with the few things he would like to say? I'm not necessarily looking for the "key" to Dimitri which "will unlock his world" or anything like that. I'm looking for something that is functional for Dimitri. He can say what he wants (or not) after that, but he needs the vehicle to do so.

The iPod and iPad, with the new apps that are coming along really do look great. I mean, about $200 dollars for and iPod and $190 for the Proloquo2go is a super advance in AAC if you think about it. I have seen great dedicated devices, and they do have advantages, but you know, lovely as the dedicated device Jive is, I don't have $5,900 sitting around the house and I don't think our insurance company will be to willing to fund it.

But either way, iPod or Jive, do these things work in Greek. Ha! Answer me that!!

Proloquo2go, ~~the new wonder device~~ offers an extensive communication program, much more than one word requests but, it is only available in English at this point. Bum. There are a few apps for the iPod which you can add voice recording, so language is not a problem, although sound quality might be. I've found myself saying "what did that say" to something that I have recorded. And these apps are, unfortunately, very basic, you can't make sentences, just individual words, or "I want" before request. It's hardly encouraging communication in all it's forms.

These apps have been helpful, I'm not saying they are not, but if we should always be building on what Dimitri has achieved, reaching for the next step, where do we go from here? Dimitri, it seems to me, has been raised for the last 10years believing communication is, for the most part, all about requesting. Well that can't be right.

I spent quite some time this morning searching for apps for the iPod which use voice recording, it gave me a headache, and the macaroni got overcooked.

Tomorrow, if I remember I will try to put up a list AAC products and apps that can be used in Greek or other languages. If I remember.

Any knowledge or suggestions are welcome.

The Good Patient

2010-10-07T11:59:00.001+03:00

Ah yes of course, the kids have been back at school for 3 weeks which is plenty of time for the swapping of viruses etc. Dimitri was off school Monday and Tuesday, with a bit of a cold, nothing dramatic.
Although I still live with fear and loathing of colds and illnesses - I'm mentally scarred I guess. Until around 6 or 7yrs Dimitri seemed to have a cold or something or other at least once a month. Plus fevers always came on suddenly with "chills", other wise known as shaking-like-crazy, blotchy skin and blue lips, these things aren't so uncommon but it still scared the crap out of me. It's probably because fevers are also accompanied by a lowering of "seizure threshold", so both myoclonic seizures and myoclonic jerks would return for the duration of the illness. Over the years the frequency and effect of colds etc has lessened - it does get better. So I'm more relaxed. But not completely.

Anyway, I diverse, Dimitri was a good patient this week. He became mighty attached to the fluffy blue blanket, attempts to remove it only increased his grip on the darn thing, and suggestion of getting up to go anywhere where met with a swift move to pull the blanket up over his head. Giggling could be heard from underneath. A lot. "Dimitri, where are you?" - giggle. "have you seen Dimitri?" - double plus giggle ". "Who's feet are these?" - double giggle plus raucous laughter.

We did get out to the supermarket to replenish supplies of milk, macaroni and chocolate croissants. You can't live without the basics. I have to say these expeditions were much less fraught than they have been of late. The only real problem was the checkout, Dimitri had picked up a Barney colouring book, okay I thought, choose your battles - he can have a book today. At the checkout however he didn't want to hand it over for the bar code, not an uncommon problem... After a bit of wrangling the book was "beeped" through and I commented to the cashier that we were still struggling with the checkout, she replied a long the lines"he'll get it eventually". This is the same cashier who during the summer had commented that a lot of my anxiety was possibly from worrying about other peoples reactions (to our somewhat dramatic escapades). "Don't worry about what other people think" she said.

Today I woke Dimitri up at 5.45am to get ready for school, he stomped into the kitchen, flicked the lid of the bread bin open to check for croissants, no luck, stomped out again. Dimitri doesn't always speak in the mornings. I know - he's non-verbal. But even so he can say so much without words, today it was obvious he was not in the mood for speaking. After he turned his nose up at the Quaker porridge oats, I decided it was more important for Dimitri to have something in his stomach before leaving for school and retrieved two croissants I had stowed away (in a saucepan in a cupboard) yesterday which cheered him up a bit...

Today when Dimitri gets home I'm pretty the first thing he will do is - check all the saucepans for croissants.

This and That

2010-09-29T14:02:00.000+03:00

I don't know what came over me this morning but I thought it would be a good idea to make chicken soup. Even though my husband doesn't like chicken, Dimitri ~~never~~ rarely eats anything but macaroni, cheese or chocolate croissants, and my cooking is notoriously ~~appalling~~ unpredictable. I certainly wouldn't be taking on such a Mrs Beeton role if I could find somewhere that sold Campbells tinned soup.

As Dimitri is unlikely to eat chicken soup in the raw, I'm considering pouring some soup over macaroni and then cunningly disguising it with cheese...Cunning as a fox with two tails?
The husband will have to eat what he is given.

Last Sunday we ventured to the botanical gardens for the first time in many, many weeks, now the temperature has dropped I would like to get Dimitri out walking again. As soon as we turned on to the main road to the gardens Dimitri let out an "wahhh!' of dissent. Aha, I thought, here we go. What I said was "we'll just take a quick look, if you don't want to walk we'll just go home". As we parked there was another, more prolonged "waahhhh!" from the back of the car, I said "we can go and take some photos with the camera", "huh-huhhh" came a happy reply.

As soon as we were through the gates Dimitri plonked his bum down on a seat, demanded water and generally tried to distract us from going any further. Luckily, there were two groups of scouts conveniently spaced further along one path, they were making enough hubbub to persuade Dimitri that they were worth checking out. Of the older group he caught the eye of a couple of girls who started waving at him. He's a bit of a flirt flashing a smile with a twinkle in his eye. I suppose I may have thought how sad it is that Dimitri is not joining in. But on the other hand, he is a people watcher, he enjoys to be the spectator on the sidelines, so you know, it's okay.

Dimitri took these two pics amongst others, I slung the strap of the camera round my neck tourist style to prevent any accidents, Dimitri squeezed in between me and the camera. He knows to look through the viewfinder (thanks in part to Fisher Price's View Master) gropes around for the shoot button and fires away. Meanwhile I tried to remain in a relatively upright position and prevent my head from being separated from my body by said camera strap.

I took a couple of shots myself, I've had the camera a year and still don't know what all the buttons a for...

I'd like to know how people get butterflies to stay still long enough to take a photo...

Bushy Park, Bikes and Rose Tinted Dreams (updated - bottom of page)

2010-09-21T10:46:00.001+03:00

Dimitri watching

Last week I was sitting in the living room watching Dimitri watching Something Special. Dimitri was fascinated, making all kinds of strange facial expressions and giggling a lot. I like watching Dimitri. I was watching him last night too as he slept, his face relaxed, mouth slightly open. As soon as I left the room he woke up...

I'd ordered this DVD along with a box set of Pingu (total running time of 253mins, urgh) in a moment of "what shall we do now" summer holiday desperation. I had been unable to locate an old Pingu DVD in our house, Dimitri is rather ~~obsessed~~ fond of Pingu and its loss was noted by him somewhat forcefully for several days in a row.

The DVD's turned up last week, when Dimitri was back at school. Typical.

Dimitri has currently abandoned Pingu in favour of Something Special, I'm not to fond of clowns or slapstick humour but I'm at least learning a few more Makaton signs (although I prefer Dave Benson Philips personally). Greek Makaton is different from English, but as it's something which I use to support language only occasionally (when we are out usually) I'm not worrying about this too much.

I was feeling a bit nostalgic though, watching Something Special, one episode is about riding bikes and is filmed in Bushy Park, which I visited on a few occasions whilst staying with my Gran and aunt Margaret during the summer as a child. Well, I'm pretty sure it was Bushy Park, maybe Richmond Park? Or both?

What made me green with envy though is the accessibility  and the really cool bike they used which enables a wheelchair to be carried on the front. These can be hired in the park. The bike is from a Dutch company, where I guess they have some experience in using bikes..

Back to harassing the husband about getting Dimitri a bike.

Liz Carr from BBC's Ouch webpage has been trying out adapted cycling in another London park, read here

Accessible Shopping Areas (not)

2010-09-20T08:39:00.001+03:00

Choosing a school bag

Sunday we took a trip down to our local shopping area in Peristeri, the weather was warm and sticky, so we didn't venture further afield as the heat and light makes Dimitri go into "I'm melting I'm melting" behaviour mode. He checked out some school bags. He is not responsible for the smashed door (replaced by that white board).

This is the main shopping area. Ahem, pedestrian shopping area. Usually there are more bikes and cars, parked and in motion. However, the city council has a new plan to defeat the vehicular violation.

Voila. Nice Bollards

Disabled access

These bits are designated for pushchairs and wheelchairs. Dimitri thinks they are for practicing his skills at "ducking".

size matters?

Hubby conveniently demonstrating width between bollards. People with crutches and walking frames obviously have no need or desire to shop or go out for a coffee.

Nice idea, the traffic really does need to be stopped in what is supposed to be a pedestrian area, but seriously, who comes up with these "solutions". Christos commented that the appearance of the bollards mysteriously coincides with local elections, hmmm. And this is not the first attempt to place barriers, they keep appearing, are found to be ineffective, disappear, only to be replaced by some other hare-brained scheme. May be it is some kind of job creation scheme? As I can only assume is the placement and removal every few months of the decorative fairy lights strung about all over the place. I mean, who minds their taxes being spent on badly thought out ideas and fairy lights?

Cute Stuff

2010-09-15T13:57:00.000+03:00

Photo and video editing at www.OneTrueMedia.com

I found this old video and I can't resist putting it on here. It's taken me ages to work out how to get it on the computer (it was on one of those little tape thingys from a camcorder, I'm sure there must be an easier way of uploading these things but I'm pretty clueless).

Dimitri had discovered his voice! He went through phases of vocalizing, which would last a few weeks then stop for months. He still makes vocalizations, but not so often like this. He is more the strong silent type now.

Long Hot Summer (or confessions of a bad parent)

2010-09-13T12:06:00.001+03:00

It has been a long hot summer. School closed on the 9th of July, it opens again today, September the unlucky for some 13th

Am I a bad parent? I don't know. I'm doing the best I can, what can I say.

How do we fill 9weeks? That's not a rhetorical question - give me some ideas.

If the weather is too hot to go to the park (if you have one near by that is), your child refuses to leave the house (on foot, I need to learn to drive, this is a serious problem), and you and your child have few friends in the vicinity (because you are socially inept and your husband is just plain antisocial) what do you do?

Above photo is a small sample of our summer (on those occasions that I persuaded Dimitri to relinquished the remote control - what is it with men and remote controls?). I suggested drawing, Dimitri, if he could have, would have rolled his eyes. He proceeded to ignore me and decided to peel onions. Okay I thought, that's good enough for me, can't be bad for fine motor skills can it?

Voices have been raised this summer (both mine and Dimitri's), yes, I know I shouldn't, it's not helpful. Rolling of the eyes and muttering to myself "how many times do I have to say..." is not what I should be doing, but under stress it happens. I feel guilty but the only thing to do is move on, "can do better" as my school reports used to say.

I can't help but feel that when things are going badly, "disability" ends up being the easy target. If Dimitri wasn't disabled we wouldn't have these problems right? Wrong. I don't live in a vacuum, not everything is directly related to being the parent of a disabled child. There are other things influencing our lives, and how we feel.

For instance, is Dimitri responsible for my inability to drive, which leads to unpredictable expeditions in 38degree temperatures, only to be met with insurance company employees who look at you like you just crawled out from under a rock? I don't think so. But we are all human, I don't always manage to leave the house armed with the tranquility of a Buddhist monk*.

So you know how it goes. I'm stressed which makes Dimitri stressed which makes his behaviour less than calm which makes me more stressed which makes him more stressed which makes his behaviour worse which makes my behaviour worse which makes us both stressed...Lalala.

So anyway, it's been a long hot summer, It wasn't a complete disaster. It wasn't a never ending nightmare, but less than perfect and yes I feel like a bad parent which I just need to get over and get on with things now. So that's what I'm going to do.

*I'm sure I read this in A Spot of Bother by Mark Haddon?

Signs of Life

2010-08-30T09:58:00.004+03:00

I'm still here - sweating (when is this heat going to end?). I haven't been able to get to the computer much of late, Dimitri objects to me using the computer for anything other than Kido'z, he is currently trying to push my hand towards the mouse...

However, Ellen from Love That Max kindly asked me if I would like to write a guest post for a series entitled Kids With Special Needs Around the World. It's kind of exciting being asked to write a guest post! Thank you Ellen.

My Montage 6/22/10 at OneTrueMedia.com

2010-06-22T14:25:00.001+03:00

Make video montages at www.OneTrueMedia.com

Summertime Celebrations

2010-06-21T07:02:00.003+03:00

Friday was Dimitri's schools "End of School Celebration", so off we went...

In Dimitri's assessment he was described by his teacher and therapists as "sweet" which, of course, I completely agree with. And also co-operative (I have to say, not always the case at home). And having a love of the new - this I did know, Dimitri loves to try out new toys, games and activities, and it can be handy to use "novelty value" for reinforcing something Dimitri may be trying to learn/master.

Twice a month on Saturdays Dimitri goes with the school for horse-riding, bowling and lunch "out" (socialization, you know).

The horse riding club they go to (for therapeutic riding) were kind enough to bring two of the ponies down to the celebration for the children to demonstrate what they have been learning. Dimitri is buddies with the pony in the photo at the top, Willy. I have to say it, he is doing great, for one thing Dimitri is wearing a riding hat! The other, I thought Dimitri may be inclined to get off after 30 seconds. Well, maybe he did do that when he first started (not sure) but right now he seems quite at home on a horse. Although I won't be booking a trip to Mongolia just yet .

After the school show, (of which Dimitri took part of course), we all sat down to be entertained by the band Aerika, the band members comprise of people with and without disability and have been performing in Greece and abroad for many years. They also have a cd Aerika kai Filoi Diaforetikoi and for those who may be interested, the program Music for All was inspired after Aerika's participation in a festival in Bulgaria.

Dimitri sat back in his chair enjoying some snacks and watching the band, he was entirely relaxed and obviously felt right at home. He has been at this school for a year, and things seem to be going, really, quite well.

(I have a short video of Dimitri riding Willy, do you want to see it?)

Piggy in the Middle

2010-06-16T08:07:00.005+03:00

Yesterday I wrote a post, published it, decided it needed more info, went to edit it, realized it was too hot to be sitting at the computer and couldn't be bothered. Today it seems somewhat irrelevant anyway. So it goes.

This morning, it's already hot (actually it's hot in our house which never cools down overnight during summer months - outside it's probably better).

During the summer we spend a fair amount of time on the roof (which, in case you don't already know, is flat. We are not precariously clinging to the side of a inclined roof). So far we have been sticking to playing ball on the roof with Dimitri, but it does seem the time has come to get out the paddling pool. Last years paddling pool has seen better days, but I have seen a Spiderman paddling pool in the local toy store which I'm sure Dimitri will like (better than the pink one we had last year I'm sure!).

The only thing is, once Dimitri is in the paddling pool, he won't get out...I guess we'll cross that bridge when we get to it.

As we don't have a usable paddling pool yet, yesterday we were, yet again, playing ball. New development - "piggy in the middle". Me and Christos tried throwing the ball over Dimitri's head, something to which last year, he would have thought "sod this for a lark" and walked off in disgust. I guess it seemed like something of a cruel joke, throwing the ball so he couldn't reach it...This year, Dimitri now has the confidence to raise both arms in the air and attempt to stop the ball, he managed to do this successfully many times and was thrilled (as were we) with the new game. I've no doubt this seems a little dull to most people. Similarly, I found myself amazed last night at Dimitri, who was wiggling his feet up and down whilst lying in bed (not sleeping...). Toes towards shins. Small things. You don't always realize the importance of small things.

Still struggling to catch Dimitri on video

If you are interested in motor skills and throwing a ball you might like this link Motor skills - throwing a ball (thx to Barbara for finding it)

Strategic Public Rehabilitation Services, in a "Third World" Background

2010-06-14T19:23:00.009+03:00

The nature of medical and welfare services offered by the National Institute of Rehabilitation of Disabled Persons (EIAA) in Ilion, to a large extent establishes and maintains public rehabilitation services in our country. Unfortunately however, the lasting damage of poor or no maintenance of premises and assets of the EIAA, form a haunting picture of abandonment that is in stark contrast to the strategic role /raison d'être of the Foundation.

The above contradiction, if anything, brutally offends the Institute - a benchmark rehabilitation service in the country that owns and operates 130 of 180 domestic public rehabilitation beds. Documented on Friday June 4 with photographer Hydra Parnes, is an endless trek / autopsy to the indicative areas within the EIAA.

First stop for us, the doctors "efimereio" (on-call station), located on the first floor of the main building. The exterior walls are "watered" by damp, the damage indelible, and lead to an abandoned “warehouse”. The door to the efimerieio is wide open "it doesn't lock, it's been broken for a year" we are informed by our guide, doctor Nasos Tsivgoulis. Inside, a 20 year old bed, suitable for soldiers in wartime, is available for doctors to rest whilst on duty. The ceiling fan is broken since last summer; now during the heat doctors bring their own. Next to this is an 8-9 square meter room which is defined as the food area. Walls are damp due to lack of maintenance, squeezed in the middle is a wooden table for two, further on a very old, empty fridge. "Here we eat 7-8 times a month, when we are on-call" shares the young trainee. "We don't ask for luxuries, just humane workplaces" are the poignant words of farewell.

Our second stop, the Institutes hostel. Our guides are two "old" staff of the EIAA, of 20 years and counting. 19 people with mobility disabilities who have no other shelter reside there. The dining room which is supposed to be the site of assembly / socialization, is more like a field house uninhabited for years. Damaged wall sockets, a table for four becoming more and more lop-sided and chairs not worth looking at. Infinitely worse are the things in the toilets. Rickety doors, windows broken, sinks in a terrible state, basins and baths are dirty and/or damaged. "For several decades, since its construction, building repairs have been minimal, especially in recent years there has been nothing" explain the two "old" staff - our guides. Residents call us for a drink in their rooms, we stop by all of them briefly, and we come to the room of 60year old Magda. Our hostess, who is already five years at the hostel, feels it is her final home. The room has a fan in the roof, the only one in the whole hostel. "I bought and installed it with my own money," answered Magda to our questions about the unexpected luxury.

The 3rd stop on the autopsy, the outdoor spaces of the EIAA: Off the hospice are four abandoned cars, they have been in the spot for four years. 150 meters further down "resides" an ambulance that was retired two years ago when a problem was found in the air conditioning. Now, because left abandoned, it no longer moves, and to be repaired more than a 1000euros is needed, which is not available. To the west of the main building stand two unused buses, one with a capacity of 28 seated plus 10 wheelchairs - the other 33 seated plus 10 wheelchairs. For transporting workers and people with disabilities, the buses broke-down three years ago, and have since been abandoned and left rotting. In the front, finally, the main building, the...ancestral ornamental fountain, completely resembles a trough for mud fights! No drop of water has run in recent years. This also broke and (what else?) was left abandoned.

Our last stop is the main building of the EIAA to ask the position / explanations of the governor. To our reasonable question, "what disaster caused these conditions of neglect?" The answer from recently appointed George Tsioumbes is more than vague "I will try to re-humanise the conditions as soon as possible. We insist on obtaining a view / position of accountability, "no comment" is the monotonous reply. We return to the subject of the immediate need for the renovation of the, third world image, neglect. Clarification of the "when" is not forthcoming. Instead - by way of distraction possibly - we are presented with the recent ministerial decision approving 492.000 € for renovation of physiotherapy and occupational therapy departments. Remaining persistent we reply - "we are not asking about the academic and welfare services the EIAA provides, but the restoration of the EIAA from these third world images" - same answer: As soon as possible ...

"The "as soon as possible" refers to the indefinite future," says the satirical chairman of the National Federation of physically disabled Nikos Skonis, explaining that "similar assurances have been given many times before, they have lost their meaning." The final sentence / request of the President of the Greek physically disabled is more than clear: "These Third World images which assault thousands of Greek citizens with disabilities should be rectified here and now."

from the column Επι Ισοις Οροις by Antonis Skordilis, at Enet.gr

Television - Drug of the Nation

2010-06-10T07:26:00.005+03:00

"breeding ignorance, feeding radiation".

Anyone remember The Disposable Heroes of Hiphoprisy? No? Okay - moving on....

Our TV broke last week.

It would be nice to think we can survive without the stranger in the living room for a couple of days. Apparently not. Conspicuous by it's absence, Dimitri has been asking for the TV almost constantly. In particular he wants to watch Pingu. We have spent more than a little time at the computer searching YouTube....

Then yesterday, like a knight in shining armor, the delivery man turned up with the Thinner, Better, All Singing, All Dancing, New source of Entertainment and! and! and!........we watched Pingu for while and then Dimitri, finally, tootled off to his play area. He pulled me by the hand with him and we started going through his books and toys. Whew.

I would like to say I don't watch television, and of course the new television is of absolutely no interest to me - but that would be an out and out lie.

Anyway, the one thing Dimitri could concentrate these past few television-less days was playing with a ball.

This video is from last year, I need to try and make a new one, Dimitri skills are so much better this year, you wouldn't believe it!

2010-06-08T16:26:00.000+03:00

I Know That Feeling

2010-06-08T09:36:00.004+03:00

I hopped over to 5 Minutes For Special Needs this morning, doing the rounds. As I scanned the page my eyes, somewhat automatically, settled on:

"Setbacks are heartbreaking for parents of children with special need. We're transformed from proactive optimist to frustrated cynic in moments."

Yes indeed. I was worried for a moment that maybe Laura Shumaker could see me....

Trying to Make Sense of Psychiatric Reform UPDATED!

2010-05-31T12:19:00.005+03:00

UPDATE: As the translation wasn't great, I've redone it - hopefully it makes more sense now. I've also added a couple of paragraphs at the bottom as to why APCHA requested for the closure of it's hostels and sheltered accommodations.

I'm trying to make sense of it, but failing. Below is news from Sundays Eleutherotypia, translated from Greek using Google, which I then tweaked a bit to make sense .

I even find who comes under the term "mental health" in Greece, slightly bemusing, many people with disabilities come under mental health, including those with physical and or intellectual disability and autism. There doesn't seem to be any separate structure within the welfare system for supported living of people with intellectual disability, physical disability or autism....odd, no??

Anyway, here is the news published on Sunday.

------------------------------------------

Up In the Air - Psychiatric Health Services
The structures most strongly affected by the economic crisis since 2008 are those of mental health care, created under the psychiatric reform program and passed under the authority of the State over the last five years.

the policies of deinstitutionalisation are in danger of being shipwrecked

The future of hundreds of patients who are accommodated in hostels or sheltered apartments, and thousands of other people, who are supported by other mental health programs, seems uncertain. Most services are functioning at below capacity due to insufficient funding. The payment of wages to employees only recently reverted to normality. The EU is threatening to cut its subsidy to Greece if the pact signed last year with the Ministry of Health to address the problems within the mental health services, is not fulfilled. The ministry has not even proceeded to the consultation with the involved parties (service providers, service users and their families etc) that had been announced.
Recently closed were two homes for adolescents, one belonging to SOS Villages and the other belonging to the association APHCA. In March APHCA applied to the Government to suspend operation of a further five units*, which have been in operation for the past 17years.Three hostels designed for the deinstitutionalisation of adults (mostly from the Leros mental hospital), one protected apartment and the hostel "Melia", which houses for a few months children of parents with severe mental illness.
Four trade unions representing staff from the mental health associations SEPSAEKO, PEPSAEE, Perivolaki, and APHCA) describe a "tragic situation" in the field, which compromise "the stability, security, continuity of therapeutic care and respect for people suffering from mental disorder”. The de-institutionalization of patients and their reintegration into society has been achieved after many years work, but this work is likely to be blown sky-high if the sheltered accommodations are closed or if the staff change. One unit leader of those which are threatened with closure explains, "Patients who have roots together in these neighborhoods will be uprooted if they go elsewhere or if they lose people who are reference points for their treatment" he says.
The worst, however, indicate the employees, is that if the existing structures within the mental health service are reduced during the current economic crisis, they will not be replaced by something else. And this will be a great loss for society, who, maybe after the injury to its pocket inflicted by the economic crisis, will perhaps also see the injury to its mental health.
Agg. B.
-------------------------------------

*Regarding APHCA’s request to suspend operation of the 5 units, I have included the first two paragraphs from “ΕΝΕΚΑ ΛΟΓΟΥ” which explains the decision:

The Board of Directors of APHCA decided to file to the Dept of Health and Social Welfare a request for suspension of service of the hostels (psychiatric health units) Thetis, Ariadne, Odysseus, Iris and Melia,
The board came to this decision taking into account the now severe problems that have arisen in the functioning of the above named hostels and apartments, due to the prolonged underfunding (which has continued for the last three years until today) from the Department of Health. This development reflects the impasse that the years of effort for psychiatric reform in Greece have come to.

My own brief summary - they goes on to explain that chronic underfunding has lead to a decline in the quality of services to a dangerous level. Under these circumstances it is impossible to maintain the services for which the units were designed. The result being the services will return to the style of “psychiatric asylum”, that is, the style of care for which they were designed to replace.

A line has been drawn in the sand so to speak – whether the Government chooses to take any notice I guess is another matter....

The Tin of Bugs

2010-05-27T08:52:00.005+03:00

Dimitri is a bit of a budding entomologist.

He really, really loves bugs. We often stop in the street to check trees for bugs, and in the summer at my in-laws house, can spend hours in the garden looking for cicadas. Personally I'm not so keen.

Anyway, some years ago I bought Dimitri a "tin of bugs" - minibeasts .

Both Dimitri and the cat are in the habit of leaving the darn things camouflaged on the carpet or marble floor. So there I will be in the morning, bleary eyed, coffee in hand, just preparing myself for the day at hand and then - BAM!! Scarey bug.

Coffee goes flying, hair standing on end, general creepy crawly flesh feeling. Only to discover it's not a cockroach (which are a constant problem in Athens), and I can in fact stop searching for a shoe to beat the thing to death with.
Strangely enough, one time, as I was dusting Dimitri's shelves of toys, I was quite calm as I picked up the desiccated shell of a dragonfly, until I realized it wasn't one of Dimitri's minibeasts....

This is the one that really freaks me out. The cat loves it, Dimitri prefers the dragonfly. All get left around the house. I think they are conspiring against me.

I Am Superman

2010-05-25T08:56:00.004+03:00

Avocado!!!

2010-05-21T09:49:00.005+03:00

More recent photos of Dimitri's kitchen exploits (yesterday that is) as the previous posts photos are from various ages.

In reverse order.....

Food Glorious Food!

2010-05-21T08:26:00.004+03:00

Dimitri, when a toddler, never asked for food. He was something of an opportunistic eater. He would be found in the kitchen investigating the surfaces for crumbs, food that had been foolishly left out, or a dirty cup in the sink to drink from (yes, yuck).

He was also a child who never "copied" in the traditional sense (I would have put a link here to imitation in child development, but when I googled imitation skills, 99% of references were to "deficits" in autism), but he did, and does "copy" what we do in other ways.

Dimitri will be there with a screwdriver as his dad takes apart a computer, up the ladder like a shot if we are putting things in the loft, brushing the cats teeth with his tooth brush (errr, yuck again), adding things to the casserole.

At this point it may be worth adding that I don't make a habit of leaving Dimitri unsupervised in the kitchen or anywhere else - he is just quicker than you can think.

We have lost a fair few meals due to the addition of washing-up liquid, I have crunched down on a magnet, the colander of macaroni has ended up in the sink before I managed to get it on a plate many times, and various other inedible objects have been tried out for taste and texture in whatever I may be cooking.

As Dimitri has show a certain interest in this area from a young age, we have been known to "cook", starting with the simplest instant mousse mixes (or even at the table, giving Dimitri a separate bowl of cheese or ketchup to add to the - obligatory - macaroni), moving on to cakes, the odd sandwich (although the cheese usual gets to Dimitri's mouth before touching the bread). Making bread or pastry has been less successful because of the yuck-sticky-fingers factor, both used to make Dimitri vomit, but he has improved over time.

These days Dimitri is quite good at getting ingedients from the fridge (it's hard to keep him out of the fridge), but they are not always the ingredients I asked for as he tends to make a bee-line for the cheese. He often helps out to make his favourite, avocado, tomato and cream cheese dip (still got the Annabel Karmel cook book...), he likes using equipment (boys and their toys), so I help him out to use the button on the mini blender, although as it turns out the electric whisk is more of a hazard to the kitchen (walls and ceiling).

Although it seems these days that Dimitri is not so interested in making a cake, he stills is always willing to help out with the daily meals. It seems in a way that he sees the "cooking together" as more childlike, or "staged", when he prefers to do "the real thing", help out with what mum or dad are doing. I think that is the same with all kids as they get older, no?

2010-05-10T11:53:00.003+03:00

Yesterday, Dimitri spilled* milk on the carpet. As the weather is getting warmer I had been intending to take up the carpet anyway and send it to the cleaners. However, I don't think the carpet cleaning company is prepared for large quantities of dairy products.

So, this morning at some unpleasant hour (7.30ish), I dragged the carpet to the taratsa* and washed the carpet with the hose and few litres of carpex (I know this isn't good for the carpet). The cat came to watch, sitting on the opposite side of a plastic awning which stops the gusts of wind in the winter, and also prevented its paws from getting wet.

After an hour or so of wielding a sturdy broom I decided the carpet was cleaned and rinsed enough (it's a big carpet and by this time I was bored).

I went downstairs, and rather than scuttling off immediately to the computer, made some gemista*. I was starting to feel quite Greek. Maybe I am being assimilated into my ~~not so~~ new environment after all? Which is odd, as I have been missing England of late. Fourteen years of distance and rose tinted glasses will do that to you.

After such a display of housewifery (circa 1940 - I'm just missing the housecoat and headscarf, although there are plenty to purchase down at the local laiki agora*, may be I should nip out now and get the appropriate attire?) I felt the need to return to a more digital era, hence todays contribution to the Blogoshere.

Must dash though, I still have the front step and several metres of pavement to scrub, apparantly it's customary to wash the pavement in front of your house (and if you are my neighbour, the road too - although she does this from the balcony with a hose and will aim at other peoples cars, or people for that matter).

* spilled=poured carton of..

*taratsa=flat roof

*gemista=stuffed tomatoes and peppers

*laiki agora=peoples market (not market selling people)

To Blog or Not to Blog....

2010-04-26T10:29:00.003+03:00

Yeah yeah yeah, get on with it.

After briefly checking the computer this morning to see what's up with fellow bloggers, I realised the urge-to-blog has vaporised, "poof" gone into thin air like the magicians rabbit. So I headed off to the living room clutching a duster hoping that doing something which has a physical result - a haphazardly less dusty house - may seem more.....substantial?

Whilst dusting I considered the possibility that I'm depressed??? "Nahhh..." just mildly disillusioned I think. I reconsidered the possiblity of depression when this song popped into my head

OK, I was thinking P.J.Harvey but this version is better.

Then a few Kurt Vonnegut gems popped into my head mostly involving thoughts on "meaningful labour". Actually, and fairly unsurprisingly, I find caring for and raising my son to be the most meaningful thing that exists in my life ~~childless teenagers will no doubt believe that to be a sad indication of my bowing down to societies preconceptions of women and, a pretty sad life~~. Be damned maternal instinct for continuation of the species and all that. Anyway, apart from the obvious raising kids is meaningful, I think maybe I would feel better with some form of paid employment. Show me the money!!

However, my chances for employment are fairly slim, and please don't mention teaching English to Greek kids, I don't know how to teach. Painting, I have to say, isn't entirely lucrative especially in the current economic climate (I keep seeing these bizarre "adverts" giving a bank account number for writing off Greek debt - forget ActionAid, donate to the Greek government??)). Also working from home means I'm frequently distracted by other things (ehem - "move away from the computer with your hands where we can see them")

Really I have no right to complain, here I am, at home, farting about on the computer, the bills are paid (just about) there's food in the fridge - life could be much worse.

Should I give the woman who sits outside the local supermarket everyday with her baby a bag of food? Not because she needs the food, I just figure to have several hundred people walk past you everyday, without a even glance to acknowledge your existence on this planet, must be pretty de-humanizing, no? But I digress.

So, anyway, if nothing much happens on this blog from here on in, it may be because I'm looking for a job (snorts loudly) or painting (possible) or clutching a duster (oh crap, a gender stereotype). So it goes.

A Brief Interlude

2010-04-20T08:26:00.008+03:00

I find myself wondering what to write about, in which case really, I have nothing to say....

I have been thinking about the conference on supported living that I went to, but nothing coherent is coming out of it (my head that is). What to say - without a more organised system of social welfare, supported living is available to very, very, very - few people. So talking about Person Centered Planning, which came up a lot at the conference, seems something of a moot point.

However, it may be worth mentioning that research from the UK on de-institutionalization, saw one long stay hospital in Scotland take 30 years, to successfully complete the process. The problems being lack of planning - in particular person centered planning, which meant not identifying what the individual wanted and required, resulting in persons returning to the hospital when the supported living failed.

Also, the mistake of de-institutionalizing people seen as "easy", that is, people with less support needs, first. Leaving the people seen as "difficult", that is, higher support needs (and or challenging behavior), even more segregated than before. This lead to an unequal distribution of funding (funding which we don't have in Greece I might add), the program ran out of money and for four years was put on hold, leaving those people seen as "difficult, stuck in the institution. The speaker/researcher pointed out that he saw this happening in the examples of supported living here in Greece.

So, yes I can foresee (and without the aid of a crystal ball) the passage of at least 30years here in Greece before successful de-institutionalization, and I may be being optimistic. In 30years time if I haven't shuffled off this mortal coil already, I may be in need of support myself. The kid, who ~~is difficult~~ has high support needs, what are his odds are for supported living?

So, back to my not knowing what to write, here's my kid, doing his thing, along with various other photos.

Blogging Against Disablism Day

2010-04-19T08:58:00.003+03:00

Blogging Against Diablism Day (BADD) will be held on 1st May 2010, and is open to all to join in,

Write a post on the subject of disability discrimination, disablism or ableism and publish it on May 1st - or as close as you are able. Podcasts, videocasts and on-line art are also welcome. You can cover any subject, specific or general, personal, social or political. In the previous three BADD, folks have written about all manner of subjects, from discrimination in education and employment, through health care, parenting, family life and relationships, as well as the interaction of disablism with racism and sexism. Every year I have been asked, so it's worth saying; the discrimination experienced by people with mental ill health is disablism, so naturally such posts are welcome too.

Click on the image above to find out more about BADD from Diary of a Goldfish, and if you are up for it,why not join in.

Mac and Cheese

2010-04-16T15:13:00.003+03:00

So Dimitri just got home from school, I got his iPod out of his bag, he immediately took it and asked for Macaroni.........

I see we may be consuming vast amounts of macaroni whilst integrating this new method of communication into our lives.

Have you ever dreamed of your child calling you mum? It's something many parents of non verbal children mention.

Dimitri's second comment (using the iPod) "mum", yes! It's me!! "mum, mum, mum".

I don't really know why Dimitri comes home and says mum (three days in a row as soon as he gets in - after macaroni that is) but I'm not complaining.

iPod Adventures and Other things

2010-04-14T08:35:00.003+03:00

Ah yes, back to the iPod - it hasn't been abandoned in a corner yet. This video is more to show the kinds of problems that can happen with a touch screen if someone doesn't have very accurate fine motor skills (I'm hoping I put the right video). Yes I need to steady the iPod with something, still working on that, and, as one of the points of the iPod is portability it needs to be easy to move about and set up. I may order a wrist band to try although I'm not at all sure Dimitri will accept this. Anyway, the problem, the touch screen doesn't work if Dimitri has other parts of his hand (or his other hand) on the screen at the same time - I mentioned it in an earlier post, but I think it something that needs reiterating. Of course there is a big learning curve still going on but it is something to be considered before investing in something like this.

Tomorrow and Friday I'm of to the "Moving to my Home" conference about supported living, and, hopefully progress to be made in Greece in the future. Unfortunately it comes at a time when the future of Thetis, the home (supported living environment) for people who were deinstitutionalized from the appalling Pikpa on Leros, because of chronic underfunding. Thetis is a part of the Psychargos program, many other areas of the Psychargos program are also underfunded and in threat (this is a complete understatement - but I don't know where to begin)

On a more positive note, I was pointed in the direction of a series of videos about The Brain by Barbara over at TherExtras. The Charlie Rose Brain Series, so far I have watched only one about visual perception (too much time at the computer as it is), but it's well worth watching, it gives a very good insight into the complexity of sensory systems, the "hierarchy" of functioning. Some interesting stuff on facial recognition and how visual perception can be "fragmented" which may also be of relevant to those with an interest in autism. I'm sure there must be some connection going on there....

A Mixed Bag

2010-04-12T08:50:00.007+03:00

Dimitri is back at school after the Easter break! I feel uncomfortable and more than a tad guilty at the degree of relief and um, happiness I'm feeling at this occurrence. I hope Dimitri is happy with his return to school too...

I have my computer back! I've been watching Dimitri draw on Tux Paint over the past week, I would be sitting next to him, doodling on a piece of paper. We have had a few arguments over the excessive use of the computer, there have been some tears and tantrums. I have decided the best reaction to hair pulling is to place Dimitri in his room for a couple of minutes, he seems to appreciate the chance to cool down. Only when he has cooled down can we "talk" again. Whilst all fired up, anything I say really just adds fuel to the fire, and the two minute separation also stops me from nagging, which I know I'm not supposed to do but the urge to point out Dimitri's "wrongs" occasionally overwhelms me.

I should point out the week wasn't a "never ending nightmare", they were good days, with good, bad and sometimes indifferent moments. There was much tootling and pootling about, a few walks, cinema, et cetera and so forth.

I bought Dimitri the air pump rocket for Dimitri may be a couple of years ago. He is now learning to use it! In the photo he is squeezing the pump, but he is also now learning to stand on the pump with a bit of force! And of course, standing on one leg to stamp on it is a good exercise for balance! Unfortunately the cat is pretty much obsessed with all things made out of foam rubber, neoprene etc, and keeps running off with the darn rockets. They are now full of teeth and claw marks. That darn cat.

I now have a weeks worth of ~~wanton devastation~~ housework to do. Ah well, off we go.

Easter 2010

2010-04-08T11:00:00.005+03:00

the road to the beach

cat holiday

sand play

ent?

the drive down

the house is down there somewhere

on the road again

No Time for Cornflakes

2010-03-30T07:31:00.005+03:00

I don't seem to have much tome for blogging of late, I don't know why, nothing seems to have dramatically changed to my daily program. Maybe I'm just moving slower and slower?

Yesterday was the end of term parent teachers meeting, which was interesting.

The speech therapist is very enthusiastic to learn more about Dimitri's iPod, which is such a relief as we have been met with a lot of negativity in the past regarding VOCA (voice output communication aids). She is all set to provide us with pictures they use in school and whatever we can't find for home on a memory stick, and to program the voice for us (my Greek accent is not too great) - so really I can't complain. I'm not sure what to write when I have nothing to complain about?? Hopefully, we will get enough practice using the i Pod at home and school to see if it is a viable option for communication for Dimitri next term. Cool. (I really am extremely happy that the speech therapist wants to work on this with us)

There were comments regarding how Dimitri has more potential than they had believed on first impressions. The first impressions were influenced by, 1, he was still settling in to the new school, and 2, Dimitri was ignoring people if he did not like what he is being asked to do.........which gave the impression that he understood very little, (or that he was confused as he is from a bilingual family).

I think being a manipulative little toad is probably a good indicator of Dimitri's cognitive potential.

Occupational and physical therapy, continue, work in progress as always.

We met the art therapist for the first time and talked about...... Dimitri's interest in and love of all things musical. He knew how to make us parents happy by saying that, Dimitri has a degree of sensitivity towards music which is unusual for his age (of course I fluffed up with parental pride). Dimitri 's mood is very obviously affected by the tempo and tone of music, I've noticed the same at home. With what music asks the art therapist? Ah - well, Dimitri does not like Tom Waits and is so-so towards The Pixies......... He likes Sakis Rouvas and Greek Folk music, in particular the music of Pontus. The art therapist also prefers the Pixies to Sakis Rouvas, so I'm now judging his qualities as an educator based on his musical preferences.

I already knew that art is not so interesting to Dimitri. As it's one of my favourite things to do, I have been inclined to proffer the paints and paint brushes at any opportunity, hopeful that Dimitri will share my interest, to little of or avail. However he has been drawing on the computer pretty much every day for the last couple of weeks.

Better late Than Never

2010-03-23T08:02:00.003+02:00

Photo taken by Dimitri at the Botanical Gardens.

News from the weekend, a little delayed, what can I say.

On Friday I had the opportunity to meet up with Kristina and Marilena, fellow bloggers and mums. Marilena came from across town, Kristina from across several European countries and the Atlantic (not just for a chat - she was doing other things too). Blogging knows no boundaries.

I don't get to meet up with other mums that often, and I like it when I do. I like bragging about my son as much as the next parent, sharing those funny everyday day stories that make you laugh and make you cry and make you slightly crazy. Everyday life. I do have "everyday life", it's not that different, just sometimes more, and it is good to be with other mums who understand that more part. I also got a new book to read, Gravity Pulls You In (thank you, to be read as soon as I finish The Speed of Dark ), and chocolates to eat (ate them already - thank you).

Saturday was a day of supermarket visits - me, husband and Dimitri set forth into Saturday shopping chaos, which Dimitri likes, he has one person to lead around while the other shops. He is fair and shares his attention with both of us. Shopping was followed by lazing about the house and cooking, followed by eating. And a visit to the DVD rental store, which went quite smoothly (although he has one spot in the journey which is becoming a regular problem), followed by, of course, watching movies.

Sunday being a lovely day saw a return to the Botanical Garden. Dimitri was not impressed at first, he ran to and sat at the first bench he saw. Pointing at us with both hands, enthusiasm and a big smile he communicates: "come here!". We pointed back, all four arms, translated as "no, you come here!". He held out for about five minutes then slowly untangled himself from the picnic bench (they take some effort for him to sit at) and came over, still smiling.

Repeat scene at next available picnic bench.

I personally wanted to avoid going this way:

Dimitri of course wanted to go that way. There is a certain "fascination with water" which should be mentioned. This fascination generally means some kind on immersion into. One benefit of Dimitri's growing is that he shoes only fit with difficulty between the steps. Although I'm sure one day we will all end up in that slimy water.

There were lots of tortoises.

And daisies.

Weekend movies - Dimitri liked Coraline, I did to, but he also liked the movie involving rodents, which was.....not so great.

Steady Pace

2010-03-16T13:28:00.005+02:00

And life goes on.

So yesterday, my husband called me to tell me he'd be late home from work. That sent my plan of quickly nipping up the road to return the DVD we hired the previous night, right up the spout.

After umming and ahhing for a while I got ready and said to Dimitri "lets go to the DVD shop". He understood straight away and was quite happy to go downstairs, leave the house and go in a direction that does not lead to the supermarket. I was surprised and pleased. Any mention of DVDs is often interpreted as watching them, right now.

There was some confusion as we passed our former DVD rental place which is now closed (as so many shops seem to be closing during this unpleasant economic climate). Dimitri ignored the guy from the "roasted pig on a stick place" who said hello (he always gives Dimitri a soda when I go there to buy a chicken).

We crossed several busy roads safely and successfully, entered the shop and, after a relatively short time we left with Dimitri walking out voluntarily and with only the occasional not-so-happy-about-leaving noise. We are still training the new staff there that Dimitri's reluctance to leave before rattling through all the (thousands of) DVD cases is not something to be worried about.

There was some bulking at the fruit shop where we had to cut through the stalls because of the truck unloading on the pavement - Dimitri thought we were going in to buy something. His eye was then attracted to the basketball pitch on the opposite side of the road where school kids were playing a game. To prevent Dimitri from dragging us both into oncoming traffic I decided to get off the main road. Which Dimitri was not too happy about in the beginning, but after letting an olive tree know his opinion of this detour he settled down to walking again. The tree is doing fine, it only lost a couple of leaves.

I don't know, but the relative ease of this journey may have been due to my singing "Kung Fu Fighting" for the entirety, with ahem, accompanying kung-fu-style moves. Well, we had been watching Kung Fu Panda.

To The Limit

2010-03-15T09:41:00.003+02:00

Sunday was kind of damp and grey. Dimitri had slept well (after 5.30am!),we all did, which is always welcome. A good sleep meant Dimitri was full of beans and running about, so a walk and stop off for a coffee and toasted sandwich seemed in order.

The three of us took the car to a local shopping area, it's not far, a 5 minute walk, but Dimitri likes the car so we drove round in a couple of small circles before parking.There is a trick to getting Dimitri out of the car, once I undo his seatbelt a swift, seamless move is required to take him by the hands to help him out before he has time to think about lying down on the back seat.

Dimitri remembered the new DVD rental shop (new to us since our usual one closed), so we went that way, only to find it still closed. We are amongst the few who wander around at 10.30am on a Sunday, 10.30am on a Sunday is not a lively time in Greece.We headed back to the shopping area, with a somewhat disgruntled Dimitri, who had decided I was to blame for the shop being closed and promptly took his dad's hand and ignored me.

In the pedestrian area I spotted "another mum" - that is, a mum, a parent like me, of a child with a disability, a difference, high support needs......the word severe comes in here somewhere.

We have bumped into her her many times on our comparatively early Sunday morning walks. Like me, she always used to be with her husband and son. It's what we do. There is a small segment of the population out walking. Wandering. Meandering. Pacing. Trying to find an outlet for that pent up energy that other kids would be expending on the basketball court, football field, Taekwondo lessons, games in the street with their peers. We walk. Filling in the hours? We are all filling in the hours one way or another.

I stop to chat while Dimitri and my husband carry on, Dimitri is not one for exchanging pleasantries.

But it wasn't exactly pleasantries, I knew it wouldn't be. The last time I bumped into her she was alone then too, and fighting back the tears. And this time was the same.

Her son, now 15 with a diagnosis of severe autism, has become "too difficult" for her to be able to take him out. Her husband has taken him somewhere else, more open, less people, less property. She is alone.

Her son has been in private "education" all his life, when she first started looking for a school, the public schools just turned them down flat "we can't help him". For years he has 4 hours a day of one on one tutoring - 20 hours a day with his parents. She used to do a lot..... she can't do it any more. Burn-out, health problems, depression........

At 15, in a couple of years the private education will end too. Other places that they have looked at, "don't take severe cases", or they say "we have too many severe cases" already. There is a new "autism specific" school locally, but she is worried that a change to a new environment where there is not a one to one staff to student ratio could end up being disastrous for her son. Other families have told her stories of an increase in self injurious behaviors on starting new schools (public schools) with less staff

I ask her about someone else we both know who I haven't seen for a while. They are trying to find residential care, the mum "can't manage" any more.

Pushed TO THE LIMIT.

There is little I can say and much less I can do to help or support this mother. We part, she carries on walking, I go find my husband and son, we carry on walking.

There is an uncomfortable thought in the back of my head that I suppress. The one that asks where we will be in 5 years time.

Learning and Relearning

2010-03-10T08:16:00.005+02:00

I think I'm suffering from iPod voice4u fatigue......

Anyway, still early days, we are working on using it (all of us - not just Dimitri). Dimitri has mastered how to ask for the television - constantly - I'm trying to find a way to temporarily turn off certain pictures..........going on the basis of how we introduced laminated pictures, we have been promptly answering Dimitri's successful requests with the iPod app, but right now picture availability seems to be an all or nothing mode.

One problem we have is fine motor skills. After years of helping Dimitri to gain the stability and strength to be able to press buttons so that, for example, he could press the buttons on a pop-up toy, Dimitri now, quite reasonably, thinks all buttons need to be pressed with force and persistence. Touch screens are a whole new thing.

He is learning to tap the screen lightly, he is learning that he needs to remove his finger from the icon for it to work, he is learning that to scroll through the pictures he must slide his finger from one side of the screen to the other then lift his hand off the screen and replace it back at the beginning again (and scrolling horizontally is easier than vertically for Dimitri).

These are all small but tricky movements that require repetition - practice practice practice. These repetitions and practice-runs are - painful to watch and require patience. Patience patience patience (which I am ever learning and re-learning)

Talking of fine motor skills, it took hard work for Dimitri to be able to hold a sponge and squeeze water out of it. He went from:

squeezing water out of a sponge to

squeezing water out of a bottle

holding empty bottle under water (tricky) and squeezing the air out

taking lids of Tupperware (sometimes I regret helping the Fridge-Raiding-Monster with that one)

unscrewing lids off jars

unzipping zip-lock bags

Possibly, if touch screen monitors had been available when Dimitri was 2years old, it may not have been asserted that Dimitri's failure to use and lack of interest in, pop-up toys, was because he didn't understand "cause and effect", and that in fact, he had a lot of motor and sensory issues that were hindering his progress and needed work on (I'm not bitter, honest).

We still have to keep practicing motor skills, there is always room for improvement.

More on the iPod

2010-03-05T10:11:00.005+02:00

The video is a little dark, the best I could do at the time.

This is Dimitri trying the Look2learn application on the shiny new iPod.

I'm not saying anything as Dimitri is concentrating on working the touch screen, how to scroll, prompting would not have been helpful but would have been unwelcome. This app is working out easier for Dimitri as he has fine motor problems, with the other, Voice4u, the pictures and words appear as a list and it's easy to activate icons by mistake.

This is his first real go, I thought he did great! Lining up one photo in the middle was tricky, but as I said the pictures are big enough for it to be "do-able". With practice I think he should develop good skills for handling and using the device. As my husband pointed out this design works out similar to the way Dimitri goes through the pages of his PECS book.

Dimitri spotted straight away a picture in there for popcorn! Then of course caught on to the electrical appliances (rolling my eyes)

The difficulties are in going back to "files" and choosing the right file (I can change the pictures for these for it to make more sense to Dimitri). When I tried to help Dimitri return to files it was slow as he doesn't want help and doesn't take his fingers of the screen. He is also steadying the ipod with one finger which can accidentally cause him to exit the application.

With the Voice4u, this can be a problem as there are options for editing and deleting the pictures on screen all the time. With the look2learn, editing is turned on and off separately through the ipods "settings".

The Look2learn program is basic, it has a "I want" icon on screen with "select an image" underneath. It's not for complex language and it would be nice if there were options with different verbs, but, as a starting point it's great. If you are introducing "requesting" (or haven't progressed much beyond it like us) it's perfect. I think it's also good for those who don't have perfect fine motor skills.

This is very important, as an AAC or VOCA device, it should be promoting independent and spontaneous communication, . With the iPod, from what I can gather (will take advice of course), the complexity of the language also increases with the complexity or "fiddliness" of use and size of icon. Does that make sense?

Someone may have complex language but not have the motor skills to use smaller icons - that sounds better. Example, the "browse" and "categories" icons on Voice4u are tiny and not particularly meaningful to Dimitri, the edit button can be activated very easily.

Well, more to write and more to check (the proloquo2) but no time.

I'm enjoying the comments about the iPod and other AAC, it's good to hear what other people are trying and what you think about it.

Gadgets continued

2010-03-04T07:56:00.005+02:00

(I was going to write this in comments to the previous post but thought it would be better here)

I'm sitting here going through the video tutorials for the Voice4u and Look2learn :) - So far managed to add pictures (hooray!) but as its an iPod I need to get an external microphone to add a voice. Not too much of a problem though, if I can work out how to add photos and voice then I think it's safe to say that it's easy to use!

We added a second program, the Look2learn, which seems as though it may be easier for Dimitri to scroll through and has the "I want" which he is familiar with from PECS.

Dimitri's skills at using a touch screen............. will take some work, he is a bit forceful, but is already catching on to the scrolling. The difficulty is he gets frustrated if someone else tries to help him - how sturdy is an iPod? (We've put a protective cover on it, but it's not Kevlar)

The two apps were 25dollars each, plus cost of the iPod. I think depending on how long the iPod survives will determine whether this is economically better than a dedicated AAC device. The ability to add pictures and voice are what makes the applications worth while I think, plus the portability.

Gadgets

2010-03-03T08:53:00.006+02:00

I'm not good with gadgets. My husband loves gadgets.

I mentioned to him that there was a new aac program for the ipod and iphone called voice4u - he went out and bought both the iPod and the application the next day. He has never shown the same enthusiasm for Gotalk4. Strange eh...!

He now wants an iPhone. As my mum used to say, "I want never gets".

Along with the e-mail confirmation for the i-tunes and Voice4u app, came some links to "similar items". If only I had read Barbara's post more carefully I would have noticed there is a whole flotilla of special education applications for the iPod and iPhone. Take a look, take a look!

Bummer (an American expression replacing my foul mouthed English reaction). Look2learn looks more appropriate. Anyway, I can upload my own pictures on to the app we have and add a voice. All I need now is to find some teenager willing to explain to me how to do that.

(I don't know if Dimitri be able to use the iPod as a communication device, this is a new move for us, and it's quite small and fiddly. If not he can still use for music and movies as the old mp3 player is on it's last legs, unless my husband appropriates it for himself that is!)

2010-02-28T18:32:00.000+02:00

Rare Disease Day 2010

2010-02-28T18:19:00.003+02:00

Rare Disease Organisation

Info about Rare Disease Day in Greece

From Επι Ισοις Οροις

Το βασικό μήνυμα που κυριάρχησε στην φετεινή αφιερωμένη στις σπάνιες παθήσεις Παγκόσμια Ημέρα ήταν ποσοτικό. Ούτε λίγο ούτε πολύ προσδιόριζε σε 10% του πληθυσμού τους πάσχοντες από κάποια σπάνια πάθηση.

Το ως άνω ποσοστό είναι προϊόν ενός τεχνικού ορισμού που έχει επιβληθεί από την Ε.Ε. και ορίζει ως σπάνια πάθηση την εμφανιζόμενη σε αναλογία μικρότερη του 1/2000 στο σύνολο του πληθυσμού. Αθροίζοντας λοιπόν όλες τις “περιπτώσεις” μπορούμε να μιλάμε π.χ. για 1.000.000 περίπου “σπάνιους” στην χώρα μας. Το παραπάνω νούμερο είναι παραπλανητικό και υπονομευτικό των διεκδικήσεων μιας και αφαιρεί απ’ τους σπάνιους το βασικό διεκδικητικό/διαπραγματευτικό τους “όπλο, δηλαδή την σπανιότητά τους.

Εξηγούμαστε για να μην παρεξηγούμαστε: Η καλή προαίρεση των διεκδικούντων υπέρ των σπάνιων (αυτοάνοσων ενδοκρινολογικών) νοσημάτων, δεν αμφισβητείται στο ελάχιστο. Η παλαιότερη και μαζικότερη όλων Πανελλήνια Ενωση Σπανίων Παθήσεων (ΠΕΣΠΑ), μέλος του ευρωπαϊκού οργανισμού σπανίων παθήσεων EURORDIS, δεν θα μπορούσε παρά να υιοθετήσει καλοπροαίρετα το μήνυμα περί ύπαρξης 1.000.000 “σπάνιων” στην χώρα μας.

Στους οποίους εντάσσονται άπασες οι χρόνιες, εξελικτικές, εκφυλιστικές, συχνά θανατηφόρες με υψηλά επίπεδα πόνου παθήσεις. Οπως δε μας πληροφορεί η ΠΕΣΠΑ, σήμερα ανά την οικουμένη δεν υπάρχει θεραπεία για 6000 – 8000 σπάνιες παθήσεις εκ των οποίων το 75% προσβάλλουν μικρά παιδιά. Εστιάζοντας στα της χώρας μας οι της πανελλήνιας ένωσης διαγνώσκουν – και ορθότατα – ότι για τους “σπάνιους” τα ελλείματα σε επίπεδο έρευνας, επιστημονικής γνώσης, θεραπευτικής αντιμετώπισης, κοινωνικής και ασφαλιστικής κάλυψης, είναι κραυγαλέα. Και επιβάλλεται να γίνει προσπάθεια ώστε να καλυφθούν.

Διαπίστωση κοινής λογικής: Το αίτημα διαρθρωτικών αλλαγών στο όνομα της παροχής αξιοπρεπών υπηρεσιών υγείας σε 1.000.000 έλληνες είναι μεν αυτονόητα δίκαιο πλην όμως δεν είναι στο ελάχιστο εξειδικευμένο. Επί της ουσίας, η έμφαση στον αριθμό/άθροισμα, αντί να εξυπηρετεί την διεκδίκηση εντάσσοντάς την στις πρώτης κοινωνικής προτεραιότητας ανάγκες όπως ασφαλώς είναι στις προθέσεις των διεκδικητών, την καθιστά ρητορική. Διότι κατά το κοινώς λεγόμενο θέτει στο ίδιο τσουβάλι όλες τις περιπτώσεις που θα μπορούσαν τεχνικά να ενταχθούν στους “σπάνιους”, ενώ στην πραγματικότητα δεν είναι όλες οι περιπτώσεις στην ίδια μοίρα με κριτήριο την επάρκεια των παρεχόμενων υπηρεσιών. Επιπροσθέτως, δεδομένου ότι οι πλέον πολυάριθμες εκ των αθροιζόμενων στους “σπάνιους” περιπτώσεις, έχουν ήδη επί χρόνια αναπτύξει συλλογικές δράσεις και ατζέντα διεκδικήσεων, υπάρχει σαφής επικάλυψη των εκπροσωπήσεων και συνακόλουθη σύγχιση.

Η τελευταία φράση χρειάζεται στοιχειωδέστατη ανάλυση. Συγκεκριμένα: Είναι τελείως διαφορετική υπόθεση η χρήση των αριθμών από πλευράς επιστημόνων ή ερευνητικών κέντρων ή εταιριών ώστε π.χ. να διεκδικούν/εξασφαλίζουν μεγαλύτερες χρηματοδοτήσεις για έρευνες, από τους αριθμούς που εκφράζουν συλλογική διεκδίκηση και εκπροσώπηση. Οι δύο τελείως διαφορετικής προέλευσης αριθμοί δεν μπορεί και δεν πρέπει να συγχέονται, διότι αποδυναμώνουν την εμβέλεια του μηνύματος συμπαράστασης/αλληλεγγύης προς την κοινωνία που είναι ο αντικειμενικός στόχος των φορέων συλλογικής διεκδίκησης . Για παράδειγμα, με βάση τον τεχνικό ορισμό των σπανίων παθήσεων (αναλογία μικρότερη του 1/2000) σε αυτές εντάσσονται και οι θαλασσαιμικοί (3000 περίπου στην χώρα μας), πλην όμως τα συμφέροντα των τελευταίων εξ’ αντικειμένου εκπροσωπούνται από τους ίδιους, το κίνημα των οποίων έχει σημαντικό αγωνιστικό παρελθόν και μικρά η μεγάλα επιτεύγματα στο διάβα των χρόνων. Το δια ταύτα είναι απλό και αυτονόητο. Η διεκδικητική εκπροσώπηση πρέπει να είναι στον απόλυτο βαθμό εξειδικευμένη ώστε να είναι καίρια και “επικίνδυνη” έναντι αυτών απ’ τους οποίους διεκδικεί . Σε αντίθετη περίπτωση και με τις καλύτερες προθέσεις δεδομένες από πλευράς των διεκδικούντων προσφέρεται 1ον) δυνατότητα χρησιμοποίησής τους από τους έχοντες επαγγελματικό ενδιαφέρον για το παιχνίδι των αριθμών 2ον) προληπτικό άλλοθι στην πολιτεία για την μη εξειδικευμένη παρέμβαση υπέρ των δικαιωμάτων συγκεκριμένων πολιτών που με συγκεκριμένο τρόπο παραβιάζονται.

Περί εξειδικευμένης πράξης ομιλώντας, υπάρχει μία που εκ των πραγμάτων είναι επιβεβλημένη αν θέλουμε στην χώρα μας να μιλάμε για στοιχειώδη από πλευράς πολιτείας βούληση αντιμετώπισης των “σπάνιων”. Ρητά και απερίφραστα : Δεδομένου του σχεδόν “τίποτα” μέχρι σήμερα υπάρχοντος, είναι επιτακτική η ανάγκη δημιουργίας ενός Κέντρου Αναφοράς για τα σπάνια νοσήματα, στο οποίο θα προσφέρονται βασικές υπηρεσίες ενημέρωσης και υποστήριξης. Αν μη τι άλλο οι “σπάνιοι” και οι οικογένειές τους που ελέω της απίστευτης ανεπάρκειας του συστήματος υγείας στην χώρα μας έχουν επί χρόνια βιώσει απίστευτες και προσβλητικές της προσωπικότητάς τους ταλαιπωρίες, θα γνωρίζουν ότι υπάρχει ένα οργανωμένο“κάτι” στο οποίο θα μπορούν να απευθυνθούν.

Οι πιθανότητες βέβαια δεν δείχνουν καλές. Ακόμα και το πιό μικρό οργανωμένο “κάτι” σε ότι αφορά τα δικαιώματα των “σπάνιων” σε τούτη δω την χώρα δεν προχωρά ωσάν κάτι να το παραμποδίζει . Από πρόπερσι ο βουλευτής Φώτης Κουβέλης έχει αξιώσει επιτακτικά από την τότε ηγεσία του υπουργείου υγείας να πράξει το στοιχειώδες και απειροελάχιστο: Να προσθέσει 5 σκάρτες γραμμές στην υπάρχουσα νομοθεσία οι οποίες αναγνωρίζουν στοιχειώδη δικαιώματα (π.χ. είσοδο με ποσόστωση στα πανεπιστήμια) στους ανθρώπους με σπάνια νοσήματα. Ανευ της παραμικρής δικαιολογίας και παρά την απαίτηση ενός μικρότερου συλλόγου για τα σπάνια νοσήματα που τότε είχε συσταθεί (με την επωνυμία ΠΑΣΥΦΑΣΜΕΝ) το πράγμα να προχωρήσει, δεν έγινε τίποτε! 6 Οπως τίποτε δεν είχε γίνει μερικά χρόνια νωρίτερα, όταν η γλυκύτατη Ελένη Τ. από ένα μικρό χωριό της Πρέβεζας που ήταν μιά από τις 300 στον κόσμο όλο πάσχουσες από Fish Odor Syndrome, αιτήθηκε να μεταγγραφεί από την ιατρική σχολή της Κρήτης όπου είχε εισακτεί στην ιατρική σχολή Αθήνας. Παρότι η πάθηση της ωραίας Ελένης παρακολουθείτο εξειδικευμένα σε νοσοκομείο της πρωτεύουσας, η πολιτεία της αρνήθηκε την μετεγγραφή υποχρεώνοντάς την επί χρόνια σε ένα διαρκές πήγαινε – έλα για την προστασία καθεαυτής της ζωής της. Τελειόφοιτη πλέον η Ελένη δηλώνει διαθέσιμη να αγωνιστεί ώστε να γίνει πράξη για τους “σπάνιους” το στοιχειωδώς οργανωμένο “κάτι” που η ίδια με ρίσκο της ζωής της επί χρόνια στερήθηκε...

Article continues at Enet.gr Επι Ισοις Οροις (leveling the playing field)

Errr?

2010-02-25T09:11:00.002+02:00

we are currently experiencing some technical difficulties

please excuse me while I go find the instructions for the camera

Children in Alternative Care - National Surveys

2010-02-23T09:51:00.003+02:00

I've put below the pages concerning Greece in a European wide report from Eurochild

The most noticeable thing about this is that, from the 241 page report, there is hardly any information available about children in care in Greece.

One wonders if the Government feels that lack of information and statistics is good at convincing others that there are no problems regarding children in care in Greece? (well, following the example regarding the economy, who knows).

In the report the is no information regarding children with disabilities

Contact details of person responsible

Name: Mary Theodoropoulou

Organization: ROOTS RESEARCH CENTER NGO

Email: moira@hol.gr

Phone: +306945414493

1. NUMBERS OF CHILDREN IN ALTERNATIVE CARE

 Full-time care in residential homes (paid staff with 16 or more children)

 Full-time care in residential home designated for children with disabilities (paid staff with 16 or more children)

 Full-time care in residential home designated for children classified as “young offenders” (paid staff with 16 or more children)

 Family-type care in small residential home with paid staff with 15 or fewer children

According to the research of Roots Research Center NGO for the YOUTH Programme 2001, the total number of healthy children in residential care is 2,500, including the public baby centers (3 in total) and orphanages (religious and private) orphanages, foster care families and SOS villages.

We do not have specific number of children in care with mental disabilities. A large number of children with disabilities go to day-care schools and return home every afternoon.

Generally there is a lack of information and available statistics.

According to Roots, many disabled children stay at home and do not go to school for several reasons: parents fear their children will be excluded; the school is too far away; there is no special school in their home area; parents have no money to spend on transportation.

 SOS Villages (or similar) care

SOS – Children‘s Village Association of Greece operates the following programmes:-

SOS Children's Village, Vari, Attica. Opened in 1979. Includes 13 family houses for 95 children, a house for the Village Director and a Community House which contains offices, library and playground facilities.

SOS Children's Village, Plagiari, Thessaloniki. Opened in 1995. Includes 10 family houses for 75 children, auxiliary houses for the Director etc., the Community House which contains offices, library and playground facilities.

SOS Children's Village, Thrace, Alexandroupolis. Opened in October 2005. Includes 6 SOS family houses, a Day Care Centre for children with special needs and a Social Centre for children and families in crisis. It is the first Greek SOS Children's Village that combines closed social services together with open care and protection.

Youth House in Paleo Faliro, Attica, functioning since 1992, consists of 6 apartments for 36 youngsters, gym, library etc. The overall goal of this project is to prepare adolescents for adult life in self-sufficiency, to help them make realistic plans for themselves and to achieve their aims, and in general to teach them independence, responsibility and the skill of decision-making.

Youth House in Thessaloniki is functioning from September 2004. It consists of 2 apartments for 14 youth, library, office etc.

GREECE

EUROCHILD - Children in alternative care - National Surveys-2nd Edition January 2010 79

Social Center in Kypseli, Athens covers the needs of the local community, as far as it concerns children and families in crisis by providing psychological, educational support and vocational counseling. This program is helping more than 120 children on a daily basis.

2. PROFILE OF CHILDREN COMING INTO ALTERNATIVE CARE

 Does child welfare legislation exclude poverty/material deprivation as a reason to be taken into care?

 What are the stated reasons for children coming in to care?

According to Roots Research Center NGO, the law provides that children may not be taken away from their families on the grounds of insufficient material or financial conditions. Children are taken away from their families for reasons such as neglect, abuse and if the parents are unable to care for them.

 How long is the average length of stay in care?

The average length of stay in care is 3 to 18 years. There is no specific data, because each institution keeps statistic information for private use only.

 What are the socio-economic circumstances of the family?

The social-economic circumstances of the family may include: one parent family with financial and social problems; parent or parents in jail; abandoned babies of unknown parents (single parents, illegal immigrants); abandoned ill babies of low profile parents.

 Are children coming from a certain geographic region or belonging to a certain minority over-represented in alternative care?

No evidence.

 Are statistics kept of the ethnic origins of children placed in alternative care? If YES what do they show?

Officially it is not possible to collect specific data about ethnic origin, but there are estimates for Roma children, Albanians or other minorities. The total legal Roma population is estimated to be between 200-300 thousand with no specific number of children under 18. There are an estimated 1.5 million legal immigrants and 0.5 million illegal immigrants.

No data is provided on the numbers in alternative care.

3. WHAT IS KNOWN ABOUT OUTCOMES FOR CHILDREN IN ALTERNATIVE CARE?

 Education

Children in care go the public school of all levels; a high percentage finish high school but only a few go to Universities. We do not have statistics on children in children‘s religious and private homes. The boards insist that this information is private and do not answer questionnaires.

 Conflicts with the law

We have no data on children in conflict with the law.

4. WHO HAS RESPONSIBILITY FOR CHILDREN IN ALTERNATIVE CARE IN NATIONAL GOVERNMENT?

 Which Ministry/government agency/department?

1. Ministry of Health and Social Welfare, Department of Social Welfare

2. Ministry of Justice, Department of the Public Prosecutors office for young children

GREECE

80 EUROCHILD - Children in alternative care - National Surveys-2nd Edition January 2010

 How are responsibilities shared? At which level – local/regional/national?

Responsibilities are shared between the national and regional level. Co-operation between national and regional level is generally very poor. There are too few social workers: there are only 7 social workers for the prefecture of Athens with 4 million inhabitants, for example. There is no social worker at the Public Prosecutors office for young children, and only three cities have Public Prosecutors for children. Local authorities have to send children to the main cities. There is a large number of Institutions in Athens and a few in different areas of Greece. There are no alternative care homes for young children between the age 12-18 with social disorder.

5. ARE THERE SPECIFIC REGULATIONS/ STANDARDS/ GUIDELINES ETC. TO PROMOTE AND PROTECT THE RIGHTS OF CHILDREN IN ALTERNATIVE CARE? ARE THESE AVAILABLE?

There is no specific regulation, though NGOs promote the rights of children. No campaigns for children in need and in alternative care.

 Do the quality standards include provision for involvement of children and parents in the decision-making process? If so what are they?

We do have quality standards which include the involvement of children and parents. But we do not have data regarding actions. There are parents associations but they are poor on decision-making and they do not have any connection with them. They are not consulted and cooperation between institutions and NGOs is generally poor.

 Are the standards included in the national child care legislation?

There are standards at the national child care legislation, but the Social Welfare uses these differently at each case and we do not have information or statistics

6. PARTICIPATION

 Is there a peer-lead group of children/young people who are living /have lived in institutional and/or foster care?

There are no such groups to our knowledge

 Is there a peer-lead group of parents with children in care?

There are peer-lead groups of parents with disabled children in day care. They are active in their children‘s rights.

7. HOW ARE CHILDREN IN ALTERNATIVE CARE DEALT WITH IN (A) UNCRC COMMITTEE RECOMMENDATIONS TO YOUR NATIONAL GOVERNMENT (B) NAP/INCLUSION

 UNCRC: 29th session: 01/Febr/2002

Respect for the views of the child:

The Committee is concerned that children‘s opinions are insufficiently taken into consideration in the context of judicial or administrative decisions, including in the context of child custody procedures following parental separation and decisions to place a child in a State institution, foster care, or another form of alternative care. The Committee is also concerned that the Youth Parliament does not represent the views of a sufficiently wide spectrum of children in the State party.

The Committee recommends that the State party: (a) Strengthen its efforts, including in respect of legislation, to ensure that children‘s views are heard and taken into consideration in all judicial, administrative and other decisions affecting them and in accordance with the child‘s age and maturity; (b) Ensure that the Youth Parliament is representative of all sectors of the State party‘s child population, including children from distinct ethnic, religious, linguistic or cultural groups.

GREECE

EUROCHILD - Children in alternative care - National Surveys-2nd Edition January 2010 81

Alternative care:

The Committee is concerned that: (a) Alternative care provisions for children, such as foster and institutional care, are inadequate, including as a result of inadequate funding and insufficient staffing; (b) There is a lack of systematic and effective coordination between welfare services and the courts; (c) The ―juvenile protection societies‖ are inadequately resourced to fulfill their mandates effectively; (d) That children from some groups, such as Roma and illegal immigrants receive particularly limited protection of their rights in the context of alternative care mechanisms.

The Committee recommends that the State party: (a) Continue to strengthen further its ongoing efforts to improve the protection of children‘s rights in the context of alternative care proceedings; (b) Strengthen the effectiveness of its efforts to prevent and reduce the recourse to institutionalization for children in need of alternative care; (c) Strengthen collaboration and coordination between the various relevant governmental and non-governmental bodies in the context of alternative care including, as relevant, with the courts; (d) Ensure that children‘s views are heard and taken into consideration in alternative care decisions, in accordance with the principles and provisions of the Convention.1

 NAP:

The Greek long-term care system foresees both direct provision of care through social services and coverage of needs through social security funds as well as specific support for indirect care services through tax relief measures. Standard services are offered by state services, by Non-Profit Private organizations and Profit making Private Organizations. From an institutional perspective, there are neither discriminations nor access restrictions insofar as the accessing persons reside legally in the country. However, in practice there are deviations from the general model to the extent that most services are concentrated in urban areas while semi-urban and rural areas suffer from serious shortages and scarcity of specialized services (e.g. After-Care or Rehabilitation Services). This means that there is a need to extend the successful structures and services which have been created as pilot projects, but also to use the important experience gained through reform actions in the Mental Health sector.

The National Social Solidarity and Cohesion Scheme foresee a series of measures to safeguard integrated access to healthcare and long-term care. These measures include:

 preventing and combating institutionalization by mitigating the stigma effect and dealing with the medical-social consequences of referring such individuals with family medical problems to closed-type care services;

 redesigning of adoption and fostering programmes;

 establishment and operation of ‗supported living‘ houses.2

8. DATA/ SOURCE OF INFORMATION

 Are there official sources of information on children in alternative care and how accessible are they?

There are some (poor) official sources of information on children in alternative care for public institutions supported by the Ministry of Health and Social Welfare. Private institutions do not give information. Religious institutions do not give information, though all of them belong legally to the Ministry of Health and Social Welfare.

 How relevant is the information from different sources and how consistent is the methodology used by different sources for collecting information?

It is not easy to collect information as each source does its own research. Only the National Statistic Office provides public statistics. Much information is restricted access.

1http://www.unhchr.ch/tbs/doc.nsf/898586b1dc7b4043c1256a450044f331/7ad07bede689f193c1256bd70037dce9/$FILE/G0240976.pdf

2 http://ec.europa.eu/employment_social/spsi/docs/social_inclusion/2008/nap/greece_en.pdf

Lack-0f-Sleep-Day

2010-02-23T08:29:00.006+02:00

Yesterday was a lack of sleep day.

Sunday night Dimitri went to sleep around 10pm, woke at 1am and stayed awake until 9am, had a 2 hour nap until 11am, then went about the day rest of the day trying to Rule The World (well, DVD the player).

I had made an appointment for the pediatrician as I'm suspecting some kind of tonsil problem. To achieve the goal of getting to the health center, I cunningly used the ploy of returning a DVD which would be in the same direction.

This was a dangerous game to play I knew, as "Let's go to the DVD shop" can be easily mistaken as, "let's watch a DVD now", having the opposite of the desired effect with Dimitri firmly planting his butt on the sofa and refusing to budge.

"go out to the DVD shop".

Dimitri whooshed around the living room, under the DVD shelf, past the TV, past the sofa, returned to the sofa, picked up a discarded computer CD (with TUX the penguin on it), swept past the TV again looking hopeful.

"out, to the shop"

Aha! We have it, off to the shop it is.

The Journey There

With the CD clutched firmly in his hands, Dimitri happily helped put his coat on, passing the CD from one hand to the other to be able to place his arms in the sleeves. Happily went down the stairs and along the road without pulling in the direction of the corner shop or super marker and beyond the 50 meter "crying perimeter". (the 50 meter perimeter around our house, whether coming or going, is usually cause for contention)

We passed where the old DVD rental store used to be with a mere grumble or two and made it the the new DVD store quickly and happily, even managing to wait (sort of ) to cross the roads.

We entered the DVD rental, I gave back the old DVD, picked UP a new one, and we left -presumably without incident as there are no painful memories indelibly burned into my head, or automatic sweaty armpit responses at the thought of the DVD shop.

Dimitri had kept hold of the TUX CD in one hand and his mp4 player in the other for the entire journey, he gave up the CD in the store and I put it in my bag.

We made it to the health center, doctors opinion rhinitis (I'm raising an eyebrow, but anyway)

The Journey Back

I was hoping for a short trip back but Dimitri was unphased by our backwards approach to Peristeri and recognized the road leading to "our coffee shop" - we had to go for a coffee and toast. Dimitri often doesn't bother to eat the toasted sandwich, but this time he did, and then decided to leave, which was fine by me as I really don't do well without 8 hours sleep a night.

I decided public transport would be best, as, of late Dimitri has been asking me to carry him after walking short distances - this is not an option: 36kilo child, 42yr old less-than-perfect-physical-specimen mother - it's not going to work.

Bus stop - of course the first 3 buses weren't going our way, never a good thing, but as we had a seat I just kept a tight hold of an upset boy hoping the pressure of hugging would be comforting. Our bus: busy, no seat and....... as we prepared to get off the driver braked very, very suddenly. Dimitri started to cry, 3 women went to comfort him (n.b. an orthodox priest had been trying to chat to me in an attempt to bring up the subject of Dimitri having special needs - I knew he was trying to bring up the subject of special needs so I was trying to keep the conversation short - the other passengers had been listening which explains their sudden interest at Dimitri being upset)

Off the bus and down the road - there was a need for some show of unwillingness as we were back within the 50 meter perimeter of our house. But we got there:-)

the photo is of Dimitri watching UP on our return home - a movie the first 10 minutes of which I find incredibly touching, should I blame this on old age, hormones, being an over emotional woman, some other stereotype or what?

Alterations to the DSM V

2010-02-19T11:26:00.004+02:00

Just found out from NOESI that the changes to the DSM V from mental retardation to intellectual disability have been translated in Greek to intellectual incompetence. What the *##*.

For the Greeks, read. I'm hoping some one can tell me this is a mistake or mistranslation or I'm reading it wrong?

Small Pleasures

2010-02-19T11:24:00.000+02:00

L o n g Weekend

2010-02-16T07:04:00.004+02:00

Yesterday was Clean Monday, so we had an extra day without the obnoxious 5.30am wake-up, which is always welcome. However, long weekends can be a struggle and this was one of those topsy-turvey, not quite as successful as it could have been weekends.

For one thing, due to an oversight on my part we ran out of melatonin - thus proving it works really quite successfully - as Dimitri didn't go to sleep until after 11.30pm on Saturday and woke up an hour later mumbling and grumbling. On Sunday and Monday night he didn't want to go to sleep at all, so I just stayed in his room all night (eventually he settled down enough that I could lie next too him and he slept) (the cat was overjoyed as it slept in his room too). Dimitri is back to the arm thwacking against the pillow which makes falling asleep very difficult - I will be off to the shops shortly to see if I can locate any melatonin.......................

Yesterday turned out to be a good example of Not a Community Walker - we had been heading to the park to join in with the Koulouma (eating, dancing and flying of kites) - turns out that Dimitri's dislike for the smell of balloons has spread to carnival outfits too, as every time he spotted a child dressed up for the last day of Apokries he started retching like crazy and was actually sick.

So...off we went in another direction. He walked very well for a long time, we stopped for breaks along the way on conveniently placed benches - but then we realised that the batteries to the mp4 player had run out, soooo, we decided a stop off at our local coffee shop was not a good idea, but Dimitri struggled with the idea of going straight home. We got there eventually.

Carnival - Clean Monday - kalouma - I'm confused, not surprised Dimitri is too. At least I managed to cook some calamari with some success (well - the husband ate it!).

Things Dimitri's Physical Therapist Would Scowl At

2010-02-11T11:48:00.007+02:00

Things Dimitri's physical therapist says on entering our house

"Dimitri, get off your knees"

"Dimitri, get up" (from the frog leg sitting position)

"Dimitri, why are you lying on the sofa?"

Ahem, what happened here to good posture and correct positioning, and sitting recommendations?

Positioning: The body is placed in a specific position to attain long stretches. Some positions help to minimize unwanted tone. Positioning can be done in a variety of ways, including: bracing, abduction pillows, knee immobilizers, wheelchair inserts, sitting recommendations, and handling techniques.

2010-02-10T08:51:00.001+02:00

Distinctive Gait? Updated!!

2010-02-10T08:37:00.005+02:00

OK, I often feel a bit iffy about putting photos and videos of Dimitri on the web, there are questions of privacy (Dimitri's and ours), and there are some not very nice people out there in the world, on the web.

But............ I was just reading TherExtras post Changing the Gait of Children with Low Tone and Cognitive Impairment.

Children and adults with Angelman Syndrome are considered to have a "distinctive gait", that is, they walk with feet wide apart and arms raised. When Angelman Syndrome was first recognised as a distinctive syndrome it was referred to as "Happy Puppet" syndrome, in that, people with AS walk as though attached to marionette strings. The walk is part of the clinical criteria, "experts" can recognise patients with AS sometimes by the walk (I also have recognised a child with AS at a playground).

So is the "distinctive gait" inevitable? Maybe by assuming that people with AS have a distinctive walk we lower our expectations of what is achievable? May be health insurance or service providers don't provide what is needed as it's seen as a waste of time?

Dimitri has received PT twice a week since the age of 2 (I'm sure Babara may have something to say about that!). We have never seen or been offered a piece of adaptive equipment, orthotic or whatnot. Although Dimitri has had dysport injections in his legs for high tone and toe-walking.

And we have never had a wheelchair.

So, we have to walk. Although I can tell you if we did have a wheel chair (and we could actually use it in this damn inaccessible country) I would certainly have used it. Not having a wheelchair has caused much stress to both Dimitri and myself - Dimitri walks but it's not easy. Persuading my son to walk can sometimes be the biggest difficulty (difficulty would be an understatement).

At an AS conference when Dimitri was about 4, I was struggling to keep a hold of his writhing body which was intent on getting inside an elevator. I looked across at the family nearest, their daughter was in a wheel chair, as I looked up with a no doubt desperate expression I caught her mums eye, my look had obviously given me away as she said "yes, sometimes it's easier". Guilt ensues.

Dimitri walked early compared to many children with AS, his tremulous movements, myoclonic jerks and other odd movement patterns are not very pronounced. All this came naturally, and has helped tremendously with his mobility. What I would like to know though, is how much all that exercise has helped? Would he be such a good walker today if we had been using a wheelchair? and if he had received different therapy or mobility aids, would he be walking better now?

All people with AS are different, some will have better mobility than others, some will be great climbers (not Dimitri's forte), others may be able to jump or run, some will be high speed bum shufflers.

Finally. My rather long and rambling post leads to, are we getting the right kind of therapy and equipment, and sometimes are we getting too much equipment? (too much equipment meaning - if the equipment is available such as wheelchairs, may we rely on it too much?)

(we are still working on mobility - it never really stops. Going down stairs, and standing without pulling to standing our still big goals, onwards and upwards!)

!!Updated areas in this strange pink colour!!

A Decade

2010-02-08T07:41:00.006+02:00

so..............here we are

A DECADE

has passed. I'm not sure where the time went.

I could write about Dimitri's no-so-easy entry into the world, the trials and tribulations of development, not enough development, diagnosis, prognosis, progress, not enough progress etc.

But today there is no need, I'm just glad we are here.

Yesterday Dimitri was reading the Sunday supplements,, I found him hovering over a picture of a wooden puzzle like those he has used in the past. I showed him the next page and pointed out Rikos, Marilena's son, who took part in an article about autism. Dimitri has his finger pressed on the picture of Riko, who he has met a few times.

Today our celebrations will be quite, understated, and will pass with no particular fanfare (although we will be consuming cake). I've no doubt I will be looking at Dimitri's baby pics, and although I miss all the years that pass, the baby and toddler stages, and sometimes wish they had lasted just a little longer, I also loved and love seeing Dimitri grow into this fine young boy. We are exactly where we should be.

That's Interesting

2010-02-03T08:53:00.004+02:00

I'm generally skeptical by nature and this includes skeptical of research, or more significantly how it affects us.

but

Rare Disease Day org has nominated Dr Edwin Weeber for the Rare Disease Day 2010 Hall of Fame. His work as a neuroscientist includes research into Alzheimers, schizophrenia, bipolar disorder and Angelman Syndrome, recently a lot more into Angelman Syndrome.

What I hadn't really picked up on before is that, the biochemical "malfunction" in AS is something which starts after birth, the extract below is from an article at Rare Disease Day.

There are important ramifications for humans with Angelman Syndrome from this research. The conclusion that this particular enzyme is not produced until after the mice are born, which also may be the case for humans, means that AS may not be developmental in nature, but rather biochemical. This discovery then opens the door for future ongoing research into a therapeutic intervention to assist individuals with Angelman Syndrome.

I had always thought that, as AS is caused by malfunction in an enzyme that it was "biochemical" in nature, what I hadn't noticed was the suggestion that this enzyme is something that is only produced after birth (in mice anyway). I imagine that for future research and possible treatment, early identification of AS will be extremely important.

Because AS is not well known, quite often diagnosis is delayed, particularly for those who have AS through more unusual mechanisms such as Imprinting Defect or Uniparental Disomy where the clinical features are sometimes describe as being more mild or atypical. However when my son went for testing at age 3 he was also described as atypical, although it turns out he has deletion which is generally considered as frequently having a more severe, or "classic" phenotype. He didn't receive a conclusive diagnosis until he was age 4.

Although I have noticed of late that more children are being diagnosed at younger ages, there is still a need for more awareness of Angelman Syndrome and many other rare disorders, whether or not in the (distant) future there will be preventative or ameliorative treatments. Early diagnosis, early intervention, better control of seizures in general have led to better progress for individuals with AS and other developmental disorders.

There is a good article here that can be downloaded in full about AS from Bernard Dan, Guy Cheron, and Karne Pelc

Sex and Drugs and Rock and Roll

2010-02-02T10:44:00.002+02:00

Sex&Drugs&Rock&Roll Trailer from Sex&Drugs&Rock&R oll on Vimeo.

So, I'm not sure that I can do justice to Ian Dury, I heard about the movie through Bad Cripple. I also found out about the song Spasticus Autisticus, from William. I never knew about it at the time, probably, because it was banned. The movie is now out in the UK, I'm wondering if it will show in Greece? Anyway, William wrote a post Punk Rock and Disability History, which explains about the song Spasticus Autisticus, and how it was misinterpreted, and there is also a You Tube video about the song being banned here

2010-02-01T09:47:00.005+02:00

Barbara at TherExtras mentioned bamboo and it's qualities in this post, which is enough of an excuse for me to put this picture, of Dimitri in the bamboo at the botanical gardens.

He is a big fan of bamboo, it's the one place he heads for in the gardens, otherwise he actually find the outdoors and nature quite stressful. It's always odd, as I let Dimitri touch, shake and pull at the plants (hopefully I'm steering him clear of anything not safe to touch) when I hear other parents tell their children not to touch. Maybe as it is the Botanical Gardens and the gardeners will undoubtedly not be pleased at wanton destruction, but isn't it good to actually let kids touch, smell and feel what the plants and trees are all about?

Growing up in the 1970's my brother and I were tree climbers in the local park, adventurers in the fields at the back of our house and alchemists of mud, stones and twigs. My mum was less than thrilled when I showed her the mouse nest I found a short distance from our house, complete with pink baby mice. We weren't hindered with "don't touch" when out in the open - mud was OK. (although "don't touch" was drummed into us in shops and visiting friends and relatives).

People round here may think we are a bit odd as we start-stop, start-stop down the street with Dimitri, to let him check tree trunks for ants and other bugs (bug boy), or to check under cars for cats. If possible we always leave (for where ever we may be heading too) in good time, so that I can avoid the nagging "hurry up" to a young boy who can't "hurry up" even if he wanted to. This way he has had time to absorb his surroundings, and learn new words, and overall for all of us to be less stressed (although things don't always go perfectly I should add).

flexibility and adaptation = bamboo

I'm trying to flex and adapt too.

Transition

2010-01-29T08:26:00.006+02:00

My husband keeps complaining about the shaving foam. Or lack thereof. Young kids love shaving foam, Dimitri too.

Dimitri also loves having a bath (fascination with water can be found amongst Angelman Syndrome clinical criteria - but I've always thought that most kids love water - until they hit the teen years). Dimitri also loves diving face down on the sofa every time I say "it's time for a bath". Being obstreperous is a great way of getting attention and so much fun!

Rather than wrestling my nearly 10year old son of the sofa and in the direction of the bathroom (which is a lesson in futility), I poked my arm round the living room door and waved the shaving foam can enticingly. In a moment when Dimitri raised his head to check my location, it caught his eye "huh huh" says Dimitri - but still hoping for a game of "go on - just try and get me off the sofa", flopped back down again. "Shaving foam?" I said. "huh huh" came the reply.

30 seconds later Dimitri was up and following me to the bathroom, me a couple of steps in front as early acquisition of the shaving foam will lead to a mountain of the stuff in the hallway. Dimitri was disgruntled that he couldn't empty the entire can of foam into the bath, but had a good soak in the tub, made sure I was thoroughly soaked too, and smelt absolutely lovely.

Repeat scene 7 times a week.

I'm wondering what will happen when the shaving foam will actually need to be used for shaving?

A Pretty Normal Morning

2010-01-22T09:31:00.005+02:00

I went into Dimitri's room at 5.40am to make sure he was awake. I sat on the edge of the bed, he kicked me off with his feet. To avoid an escalation of the "try-and-make-me-get-out-of-bed" game, which Dimitri enjoys and will prolong as long as possible, I decided to leave him to it. He soon got up (which is unusual), and after a visit to the bathroom he made a dash for the kitchen before I had managed to get his clothes on, immediately opened the fridge, took out the tupper with the remains of yesterdays macaroni, put it on the table and was ready for breakfast.

I sat bleary eyed with my coffee next to Dimitri and wrote the above. It was still before 6am, so please ignore the state of the writing and spelling. I'm writing in (very bad) Greek after some(more) complaints from teachers about my speaking in English. I don't know why I wrote in Greek as most educators I've met consider literacy and numeracy beside the point for Dimitri and believe he should be concentrating on "life skills". Maybe if they see my spelling they may change their minds.

Dimitri can't read as such, he knows a few words by sight (Disney, Pixar, popcorn and the like), but I keep writing like this for him - with words and widget symbols. For one thing he finds it interesting (just how much time can one spend threading beads without getting a little bored), and the other, you never know, he just may absorb some of this stuff.

I can print out the same kind of thing on the computer using Widget, but as it turns out Dimitri enjoys watching me write and draw the symbols, even if the printouts do look much nicer, neater, shinier (laminated) and more appealing to me. Anyway, due to the new-computer-situation, at the moment we are without Widget's Communicate in Print. so it goes.

2010-01-20T11:51:00.007+02:00

It took me so long to find the pictures, and then the program to change the size of the pictures, I now can't think of anything to write.........

I remember it took Dimitri a very long time to be able to turn pages in a book. His ability to turn pages was hindered by fine motor control, and the extra long time it took for him to lose interest in books as tasty and rippable objects.

The cat likes to sneak into Dimitris room for a catnap! It is not easily detered.........despite a clear and present danger of tail pulling and bone crushing hug (the tail is conveniently grippable to bring the cat within range for a bone crushing hug). The cat is not mistreated, it has every opportunity to move if it wants.

General Randomness

2010-01-19T07:24:00.006+02:00

My husband built me a new computer, one never knows why he does these things, for amusement? Cos' he wanted the other one back? Cos he's turning the spare room into some kind of ~~geek haven,~~ ~~space station,~~ work place. Anyway, I don't like the new one. I can't find my files, the keyboard is odd, for some reason something called "bing" has replace google, and I've managed to magnify everything on screen and have no idea how to un-magnify it.

For some reason I've been inspired to try using Html - I'm sure it will all end in tears.

Yesterday when doing the ironing, I found a laminated picture symbol for "television" in my jeans and a 20 euro note in Dimitri's trousers. I can understand the pecs symbol (now useless, the laminating didn't survive), but how did 20 euros get in Dimitri's trousers?

This talking photo album has been lurking on a high shelf in our kitchen for the best part of a year. I was inspired to try to make some kind of AAC device for Dimitri, but with limited money and resources, choices were few. For a few days Dimitri has been hovering under the shelf, pointing here and there. The usual response for this particular shelf is "there is nothing of yours up there", (it's where I ~~hide things~~ keep things out of reach, such as my house keys, and Dimitris picture symbol for the computer (I know I know - I'm not suposed to hide them).

I eventually realised my error and spotted the dusty photo album. I had programmed it (with my dulcet tones) last year. It has a few basics, "I want", "eat" "drink", "milk" (Dimitri loves his milk), "macaroni" (Dimitri loves his macaroni) "music", "television" and of course not forgetting - "marbles".

The reason Dimitri hasn't been using the album is because the buttons are too tricky, you really need to be able to hold one page between your finger and thumb to press the button in a "pincer" style. If your press a button with one finger from the top it tends to catch more than one button at once, causing a blather of mixed up words.

Anyway, Dimitri was determined to try it out, and successfully managed to hit "I want", although it's in Greek so........... "θελω - θελω - θελω - θελω - θελω - θελω................." was heard echoing around the kitchen for several minutes. But then Dimitri got over his amusement at "θελω" and quickly moved on to put it together with "television". I'm impressed. Although television is not the most constructive use of AAC, but you've got to start somewhere.

Impaired Airway Clearance and CPT

2010-01-06T09:32:00.003+02:00

A couple of links which may be relevant to some Angelman Syndrome families as well as other children and adults with disabilities.

Children and adults with disabilities may suffer from respiritory problems more frequently, quite often due to restricted mobility, dysphagia or an ineffective cough. There is a very good summary here

Chest Physical Therapy is often used to help loosen and expel secretions. Quite often parents may have to learn to perform some of these exercises on their children, in particular "percussion". As Jen rightly pointed out in a comment, if you haven't been taught to do this properly then it's quite likely completely ineffective. Although nothing replaces instruction from a qualified physiotherapists, I found this link on performing CPT worth taking a peek at. It pointed out to me, that I haven't been instructed properly.........

As it turns, out performing any kind of exercise on Dimitri is not that easy, as he is nearly 10, and a strapping lad! So instead I've opted to trying to keep Dimitri as mobile as possible. That would be: me chasing him around the house, bouncing on the furniture (him, not me), or on the therapy ball, tickling, and trying to get Dimitri to copy me cough (which he does sometimes as he thinks it's funny to hear phlegm gurgling in his throat - although sometimes he may copy a complete stranger on the bus and then laugh, which can cause some misunderstanding)

New Year

2010-01-05T09:42:00.003+02:00

This is how we started New Year...............fever, cough, and a truck load of medicines. Bleargh! Dimitri is still quite lively, but sickly. My google search for "how to give medicine to uncooperative children" wasn't that helpful so there has been some begging , pleading and (ultimately) wrestling going on. Dimitri usually wins.

Dimitri, like many children with disabilities, doesn't cough as much as you would expect given that his lungs are full of phlegm. So.........as per doctors instructions, I have been attempting to whack Dimitri on the back for 5mins morning and evening. At first Dimitri gave me a dirty look and whacked me back thinking I was in fact hitting him, then decided it was a hitting "game" where he was allowed to whack me back as frequently as possible (which he found quite amusing). Since then he got bored of the whole thing and runs off as quick as possible.

The fever has gone, thank goodness, as I have never gotten used to the rapid fevers which make him go blue /purple and uncontrollably shakey. On the bright side, as Dimitri's epilepsy has been under control for some time, he has not had any breakthrough seizures and the shakey movement disorder hasn't come back as it used to when he was younger. But the cough is going to take a while to shift, and for some unknown reason, this morning Dimitri is also sporting a runny nose and sneezing. What? A new separate virus? Oh joy.

Dimitri is understandably, not a happy bunny....................................

I am a somewhat frazzled bunny.

Writing about Dimitri being sick, or not as sick as he has been at other times, makes me uncontrollably supersticious, and I now hoping that I'm not going to be invoking some kind of sod's law

2009-12-29T19:10:00.002+02:00

opening presents (DVD's)

getting new DVD's off the shelf with cunning device.....

Left Handed Revelation - (at the age of 42 I finally learned to write)

2009-12-28T14:10:00.003+02:00

Seriously, I've been writing "wrong" all my life.

I came across the following video from a link in a comment on Rich Shulls blog (convoluted). I have been practicing how to write "right" since then, but maybe you can't teach an old dog new tricks as the writing looks very childish. Not that my usual writing is great........ and it makes my hand hurt after about, um........ 30 seconds (as does the right handed mouse on this computer). So that teacher who insisted that my work book should be kept "in line with the desk" was completely wrong, and partially to blame for my bad writing skills -harumph!!

If you have a left handed child, this video is probably worth watching (don't know if teaching has changed since I was a kid - maybe lefties are taught properly now?)

Happy Holidays

2009-12-24T19:42:00.005+02:00

Merry Christmas, hope everyone has a great holiday..................and apologies to those who I haven't managed to send messages to. I'm a slacker with "time management" difficulties, may be that should be my new years resolution "work on time management"?

Festive You Tube

2009-12-22T18:08:00.001+02:00

Watchin You Tube with Dimitri:-)

2009-12-22T08:34:00.004+02:00

Picture removed per request from Hanen due to copyright laws

That's familiar...(the one on the left)

Yesterday Dimitri was pulling books of his bookshelf, flicking throught the books and then showing me some pictures, sometimes as a question "what's this", others as a request "Sponge Bob?", to which my answer was "No, not now" (whilst thinking, not now! not ever! Sponge Bob must die!)

I noticed he was absorbed with something, looked over and saw the above picture. Fate? Whatever. The book - You Make the Difference by Ayala manolson from Hanen. It's a simple book, mostly common sense. But it's common sense that I need to be reminded of quite freqently. It's all too easy to fall into the trap of being crazed-looking-mum, even if I want to be super-cool-easy-going-mum.

UPDATE - this post makes no sense because there was a picture, but now is none - you'll just have to try and visualise something :-)

Resistance

2009-12-18T15:02:00.004+02:00

There was no school today for Dimitri as they are preparing a bazaar and (I assume informal) parent teacher meeting later this afternoon. We won't be going, husband is away and the stress of searching for a taxi there and back just to hear how Dimitri is doing "great" and that he is "a great kid with wonderful smile" really isn't worth it.

So off we went for an Athens "shopping spree". Most of our day has been great. A small amount, a total of a few minutes of difficulty was also included. I'm still recovering from the altercation I had with some fellow shoppers in the supermarket on the way home.

Resistance. There seems to be a lot of resistance in our lives in many forms. Dimitri is often physically like a watch spring that has been wound too tight. There is a kind of constant pull. When we are out I hold his hand, for balance and guidance. There is almost always resistance, a pull, to the side or back. No matter how slow I go Dimitri is a couple of steps behind, a tension between his hand and mine. Or alternatively to the side. If he is next to me and my arm is relaxed he will stretch are arms to full extension and often be leaning outwards too. Tension. Does he need to feel the tension?

I remind myself it's not deliberate but sometimes it annoys the hell out of me. On the positive side people have commented on my arms being toned and ask what kind of exercise I do............My back hurts.

We went around Athens, bought Dimitri a pair of trousers and a top, the top has a 4x4 jeep on the front and the trousers are "camouflage pants". I've been thinking it's about time he stopped wearing all those track suit pants with elasticated waist, even if they are more practical. Stopped off in Eleftheroudakis book store for a coffee and cake for Dimitri (I think I've mentioned before it's one of few places with a disabled access toilet where we can both fit inside). Dimitri as usual lined up and got the tray ready at the self service counter, checked out the food through the glass counter and settled on cake (shame they don't have better food choices).

On the way home on the metro Dimitri was opposite an old guy with a string of worry beads. Dimitri sat quietly - slowly he reached out a hand, I wagged a finger, Makaton "no", he sat back again still quiet, but I was relieved when the guy got off at the next stop. Dimitri likes to press his face against the windows, I'm sure he feels the vibrations of the moving train, and possibly the sound is different (if you have a child who puts a slinky in their mouth, try it yourself and twang it a bit, you'll soon see why). Dimitri has also been a bit more vocal of late (no, nothing like speech), and was also apparantly making train noises, as the train got louder so did Dimitri.

Getting the bus back - I saw the bus pull up, we were a short distance away, "the bus Dimitri! Run!", these are words that Dimitri knows, and he can run but kind of awkwardly and not very fast, but as I went slightly faster (I wasn't trying to make him run full pelt or anything), the resistance increased, his body tightened, his legs "got stuck". Bo#*#cks. Sometimes it works, sometimes it doesn't, sometimes Dimitri is as light as a feather holding my hand and keeps apace. Not today, it's back to resistance. I can only imagine that there are some days where Dimitri's "wiring" is running smoothly and others when there is interference. As time goes by the interference seems to be less in intensity and frequency, but it's still there, lurking in the background.

2009-12-17T08:25:00.003+02:00

ALL PEOPLE WITH DISABILITIES HAVE THE RIGHT TO LIVE IN THE COMMUNITY, WITH CHOICES EQUAL TO OTHERS.

Article 19 of the UN Convention on the Rights of Persons with Disabilites

Petition for the Closure of Long Stay Institutions in Europe

2009-12-17T07:57:00.004+02:00

The European Network on Independent Living and the European Coalition for Community Living are running a campaign calling for the de-institutionalsation of Persons with Disabilites.

"the segregation of people with disabilities in long stay residential institutions is in itself a violition of disabled peoples human rights"

You can read more and sign the petitions here

If you want to read more about it in Greek then check Psi-Action

Please sign!

The Iron Chicken

almost an update of sorts

Another One Bites the Dust

March Hares.

I'm in the Mood For

Technical Error

Eleven

Wednesday Whitterings

Monday Morning Mumbling

Post Christmas Anxiety

Senbazuru (two posts in one day!!)

Not a Particularly Seasonal Post

Notes for November

Still Here

AAC, Hardware, Software, Operating System (I'm too old for this)

Cooking with Augmentative and Alternative Confusion

The Good Patient

This and That

Bushy Park, Bikes and Rose Tinted Dreams (updated - bottom of page)

Accessible Shopping Areas (not)

Cute Stuff

Long Hot Summer (or confessions of a bad parent)

Signs of Life

My Montage 6/22/10 at OneTrueMedia.com

Summertime Celebrations

Piggy in the Middle

Strategic Public Rehabilitation Services, in a "Third World" Background

Television - Drug of the Nation

I Know That Feeling

Trying to Make Sense of Psychiatric Reform UPDATED!

The Tin of Bugs

I Am Superman

Avocado!!!

Food Glorious Food!

To Blog or Not to Blog....

A Brief Interlude

Blogging Against Disablism Day

Mac and Cheese

iPod Adventures and Other things

A Mixed Bag

Easter 2010

No Time for Cornflakes

Better late Than Never

Steady Pace

To The Limit

Learning and Relearning

More on the iPod

Gadgets continued

Gadgets

Rare Disease Day 2010

Errr?

Children in Alternative Care - National Surveys

Lack-0f-Sleep-Day

Alterations to the DSM V

Small Pleasures

L o n g Weekend

Things Dimitri's Physical Therapist Would Scowl At

Distinctive Gait? Updated!!

A Decade

That's Interesting

Sex and Drugs and Rock and Roll

Transition

A Pretty Normal Morning

General Randomness

Recommended Reading

Impaired Airway Clearance and CPT

New Year

Left Handed Revelation - (at the age of 42 I finally learned to write)

Happy Holidays

Festive You Tube

Resistance

Petition for the Closure of Long Stay Institutions in Europe