Two Posts in One Day!!!

Yes, I thought my ramblings on health insurance would be better separated from the rest of these early morning ramblings. Funny how I still manange to go on (and on) after having claimed same old same old.

This is Dimitri contemplating school at 6am, he is less than impressed I can tell you. He seems to have inherited a knowledge of Greek wrestling. Every morning when I wake him up he adopts a position lying face down on the bed which he cannot be moved from. I can see this may have some repercussions as he gets older (bigger).

And as Chrismas is coming up, I thought I would mention Dimitri's new passion, Connect Four. After MiKy mentioned her son taking an interest in Connect Four as a turn taking game (see here), it occured to me Dimitri might like it, and it is a good fine motor exercise (what more can you want?). Dimitri is not interested in taking turns, but anyway, he likes putting in about 10 or so pieces before tipping them out(he aims for the box lid but most end up on the floor) and starting again. OK, yes, I now keep finding the little token things on the floor in every room of the house, but they are easier to find than marbles.

Same Old Same Old

Well there is nothing much to report on the home front. Well ,we did spend a couple of hours in the insurance place yesterday but dealing with health insurance, is universally, a long and un-necessarily painful process which needs little explanation.

Although this particular insurance building reminds me of pre-glasnost (or even pre WWII) Russia, with the queues of hangdog people, the colour strangely sucked out of them, and paperwork in triplet and official stamps of every size and description. It's a strange thing indeed when every 3-5 years people with disabilities are required to attend in person to display their various forms of decrepitude for some kind of "Insurance Freak Show". Dimitri displayed his defectiveness very fashionably, and we were allowed to pass to the other side, official disability for 3 years. In 3 years time, who knows, he may have grown back that piece of missing chromosome 15, and yes, maybe that old man will have grown his leg back.

Getting Used to Change

Me that is, not Dimitri.

Dimitri went for he second Saturday "day out" with the school. Therapeutic Horseriding, bowling and lunch at a fast food kind of place. I don't have any photos yet, but I hear all is going well, and Dimitri came home rosey cheeked and happy.

So there I was at home, wondering what to do with my newly aquired "time to do whatever" on a Saturday. I felt at a loss, so faffed about doing some spring/winter cleaning, in my usual haphazard, and therefore ineffectual manner. Moved several piles of junk to different locations, dusted a couple of above eye-level areas, attempted to cook something, hovered around the computer and the time was gone. Boy was I relieved to get Dimitri back!

It was like when Dimitri first started a day program. While he was there, I would go out to do the shopping or whatever with that constant feeling of something being missing, and hadn't I been holding something??? (answer........the pushchair!) Going out without Dimitri in his pushchair was just odd, he and the pushchair were an extension of me. I would occasionally have startled moments of "where's Dimitri?", as though I would have left him somewhere accidentally.

Dimitri is stretching his wings which is as it should be. I, on the other hand seem to be a bit.....dependent and needy.

The Pretty Simple World of an Angelman

This is a short documentary by the brother of someone with Angelman Syndrome. Although I thought he was invading his brothers privacy a bit by filming him in the shower, the movie is a nice look at a siblings point of view, trying to understand how his brother with AS thinks.

(Darren who runs Christos Concepts, which makes wonderful individualised leaflets for people with disabilities, put me on the trail of this video)

Disability Wasteland

This is where Dimitri fell down the kurb last night as we tried to cross the road

This is where the bin was put back to afterwards - see, loads of space to cross, no?

This is the same area next morning, the heavily inclinded slop is special designed for wheelchair access no doubt.

A particularly nice view from the other side.

And just for fun, the corner on to the main road where pedestresians are frequently required to navigate as there is no space between car and said bin.

I was holding Dimitri's hand and I felt him begin to fall and as I tried to grip his hand harder I felt his fingers slip through mine.

Because Dimitri is disabled, his legs are quite stiff and he fell like a tree, head first straight down. His head hit the bin so hard it moved. The height of the curb meant he was left lying face down in the gutter with his feet higher than his head up on the curb. I struggled to help him up, some guy tried to help to.

Venturing out of the house, should neither be this difficult nor dangerous. I'm sick of this.

William Peace wrote a post recently at his blog, Bad Cripple called Hostile Social Environments, I had been tempted to just write Greece in the comments but didn't. Just been back there and left a comment. Not that it helps our situation in Greece, just helps me let of a bit of steam. I'm considering sending the photos to the Mayor, my husband looked at me dubiously when I said this, the chance of a reply are slim, let alone action. I'm reminded of a story Anathanasia was telling me of a woman who visited the same person(in a position of power), every day, for years(?), with the thought that if she bothered him enough, eventually he would act. He did.

I'm still sick of this..............................................................................................................

The Velcro Wars

Actually this has less to do with velcro and more to do with the (rather worn looking) man selling it. Not that I have anything against looking worn, I'm kind of that way myself .

After a brief expedition to the equally despised bank and supermarket (both of which consume large amounts of cash), I was passing the local haberdashery shop, which is in fact about the size of a large broom cupboard and overflowing with rolls of fabric and other such stuff, asked the chap working there if he had any self adhesive velcro. He did. I have in fact purchased velcro from this shop before but the quality is a bit iffy, so I usually go elsewhere (I can be such a snob about velcro).

He asked me if it was for school (because I look school age?), I explained that Dimitri uses a communication book requiring reams of velcro and the reasons why. As I braced myself for the usual suspects - that is replies such as:

The lord doesn't give us more than we can handle

We all have our cross to bear

Oh, I'm sure everything will be fine

He'll grow out of it

If he can hear he will talk

My friends, neighbours cousin didn't speak until they were 31

So....... does it run in your family

Didn't you have tests when you were pregnant

I was actually quite pleasantly surprised when instead of any of the above he started talking about the governments responsibility towards people with disabilities and how they are not doing enough and the general state of health care in Greece, in an equally pleasant matter of fact way with complete absence of pity. It was refreshing.

He has in fact seen me and Dimitri pass by frequently, as we squeeze between the front of his shop and the periptero (and the chairs they have on the pavement to sit and have a chat), where Dimitri has on occassion been quite upset and even had a sit down strike, we are not unknown in the neighbourhood.

Anyway, I have made a mental note for any future petitions I may be waving about, he is now on the list of potential helper-outers.

Angelman Syndrome and H1N1 vaccination

The Foundation for Angelman Syndrome Therapeutics has a webpage with information regarding A.S. and the H1N1 vaccination here. No earth shattering news unfortunately, just the basics, although there is a link for how to administer tamiflu tablets to an individual who can't swallow the pill which could be important.
(FAST is now also using Twitter here

There has been bad news amongst the Angelman Syndrome community recently, and it has been in regards to the H1N1 virus and complications arising from it. My condolences, my heart goes out to the families.