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
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.
12 comments:
Hi, Emma, Seems we haven't visited for a while....
Looks like you have a few leads on tech stuff - an area I am not much use - except I have been bookmarking anything that depicts apps.
Would you be willing to put a few details on what you think 'better' for Dimitri would be?
I've seen much disappointment in government from families with members who need lifelong support. Not just my country. Barbara
The inclusive slate looks really interesting---we are quite 'iPad-ed' up here and 'Mac/Apple'd' too so not inclined to use any Windows devices. Do you think you might get one for Dimitri? I have been quite surprised at Charlie's liking for his iPad and the ease with which he has taught himself new things on it.
I didn't know Marilena has two daughters!
Charlie indeed seems to be cultivating much more 'aloofness' lately, some because of his having definitely entered teenager-hood. He likes us to be around (Jim especially, these days) but not actually doing anything with him.
Well, I guess I have the same dream regarding us ending up in California---my home state is currently having massive budget problems and lots of cuts to programs, so right now it is not good. But I think the reason we would move has mostly to do with knowing there is family out there and support.
We'll be in Athens March 17 and 18. !!
What about an iPad?
It's good to hear from you again -- I, too, often fantasize about a "better" place than California for my daughter, but I'm not sure there is such a thing.
TherExtras - Hi Barbara, been spending less time at the computer, which is not a bad thing:) I did get your message the other week, but when I replied it didn't get sent (I think it was from your mobile).
Better for Dimitri - better really just means that there are services as opposed to not. Even if they are not always efficient or functioning well or enough. Of course there are people here in Greece who will say they have been pleased with the services they receive, but this does not include people with severe or complex needs. (and who you know in Greece can be quite helpful). Finding adult services is dependent on me phoning a variety of "private not for profit" organisations hoping that they will "take us" (which most don't). Or paying for someone to come to our home to take care of Dimitri.
Of course Dimitri is still young, not there yet, but it is scary.
Kristina - my husband has a real thing against Windows:), but he hasn't gone for Apple yet(puts Linux on everything anyway). The inclusive slate is quite a reasonable price, but no idea how reliable it is, I think I will send an e-mail to ask more details.
Poppy has two daughters, not Marilena:)
I've been reading about the budget cuts, sounds appalling. I've always had a hard time understanding the insurance coverage in the U.S. anyway, to me it often seems barbaric.
March!! It's come round so fast!
Elizabeth - I know, the iPad seems so much better, the problem for us is finding apps in Greek so he can use it at school too:(
The grass is always greener as they say:) I don't think anywhere has a perfect system of care, and there are always too many who fall through the gaps....
Hi Emma ,hi everyone , my son Pavlos has autism .We have an iPad but i dont really know where to search for apps for autism.Could you please recommend me some and especially for asperger syndrome.Please keep in mind that my son doesn't speak Englsh
thanks in adcance
This is for Maria-Maria:
http://a4cwsn.com/ Apps for children with special needs
I've been on the computer less but still get further behind in all things! (Too many 'things'?!)
I guess I believe if you become more specific in what you want for Dimitri it will be easier to find it. No? One specific might be: family support like Kristina identified. Sorry to read a return to England was only in a dream.
He is young and you have already started looking - which is very good. Barbara
Me, again. If you have never read K, you are in for a treat. This post seemed to be a good one to pass on to you:
http://drycappucino.blogspot.com/2011/02/why-i-dont-hate-autism-and-neither.html
Barbara
Hi Maria - what sort of apps? The most we have are for communication and probably won't be useful for Pavlos.
One that I can think of is Pictello, which is a talking photo album, you can record your own voice so not a problem with language. You can use it for picture schedules and reminders, eg steps for washing hair or maybe a favourite recipe. Pavlos could also make his own albums of favourite things.
Hm, will have a think.
The Timetimer might be helpful too?
http://itunes.apple.com/us/app/time-timer/id332520417?mt=8
and there is (in English) for the Natural History Museum:)
http://www.amnh.org/apps/
TherExtras - yes, I'm finding it hard to narrow in on specifics, sometimes "where to start" is the hardest.
Nice post from K, "moving from the general to the specific".
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