am have another relative with classic autism,he is a cousin,fifteen years old and lives in Dublin.
he has big problems with understanding what is real and what isnt,he imagines a lot of things in his head about real people,and has got them into trouble because to him it really did happen.
for example,he accused his dad of beating him every day to his social worker,and being social workers they took it seriously.
dad was mentioning this to one of the more autism educated staff here about Alan and how he has got his family into trouble without meaning it,and the staff said it sounds more mental health than autism.
but then again,the staff isn't that educated about autism,as dad also told him he has had a long obsession with the twin tower attacks,and the staff said that because of that, he is not autistic and is more on the mental health side, which is rubbish as classic autism can include obsessions to-more so for objects sake than informations sake,and it is needed criteria for another form of autism-aspergers,so it's hardly 'mental health',the subject shouldnt come into it as autists are not affected in the same way by things so whilst one subject may bother a non autist,it might not bother a autist.
what does everyone else think?
could not understanding that the made up memories in his head are fake be part of his experience autism or is it more on the mental health side?
his mum and dad dont know anymore than what am have wrote here,because of the lack of autism educating there.
he wasnt even diagnosed until a couple of years ago,even though he has 'obvious' autism.
Monday, 30 June 2008
Things are going to get better
Today,usual staff from NAS came,and she told am that her boss had come around here last week to drop purse off as she had forgotten to leave it,and come in to see am,but am had been completely unaware she was there at the time.
She noticed that left leg was now mostly all dried blood from deep cutting last week,and asked if am knew the reasons why had done it,so am typed out it was mostly staff related,living here related etc.and she said that her boss had actually said to her this place was completely unsuitable last week to her,and had saw am in a neglected state.
She said she and her boss,and the national autistic society overall are going to be fighting for am for whats gone on within learning disability services,are going to try and get am out of here into a suitable adapted specialist autism home as soon as possible and before then they're going to complain about the staff here,the poor treatment against am as an autie with high complex needs,and the lack of autism understanding.
She said no one should be self injuring themselves because of things like this.
Am really cannot believe something is finally going to get done.
For over a week staff had been leaving messages with one of the managers saying to visit am urgently,but she kept saying she was too busy,it says a lot about the learning disability services when a manager cannot have time for it's residential home residents.
Not only that,am have been awarded funding for more hours for residential support staff from the NAS, am will have them three days a week now,and am know who they are-the NAS unlike learning disability services introduce staff slowly to get into routine.
She noticed that left leg was now mostly all dried blood from deep cutting last week,and asked if am knew the reasons why had done it,so am typed out it was mostly staff related,living here related etc.and she said that her boss had actually said to her this place was completely unsuitable last week to her,and had saw am in a neglected state.
She said she and her boss,and the national autistic society overall are going to be fighting for am for whats gone on within learning disability services,are going to try and get am out of here into a suitable adapted specialist autism home as soon as possible and before then they're going to complain about the staff here,the poor treatment against am as an autie with high complex needs,and the lack of autism understanding.
She said no one should be self injuring themselves because of things like this.
Am really cannot believe something is finally going to get done.
For over a week staff had been leaving messages with one of the managers saying to visit am urgently,but she kept saying she was too busy,it says a lot about the learning disability services when a manager cannot have time for it's residential home residents.
Not only that,am have been awarded funding for more hours for residential support staff from the NAS, am will have them three days a week now,and am know who they are-the NAS unlike learning disability services introduce staff slowly to get into routine.
Wednesday, 25 June 2008
Overdose
Not the on purpose type of over dose.
It was the stupid bastard with a crap short term memory over dose.
Tonight staff were giving am last medication of the day,and am had the usual big tegretol with small tegretol,and a red and white,due to having a short short term memory,am had forgotten had just taken the big tegretol tablet,and there was one lying down,so took it.
The staff started looking for it,and said it had fell out of the packet [on big plastic sheets of tablets] and wanted to know if am was hiding it.
Shit.
Am have been on different forms of tegretol since teenage years,and have had quite a lot of wrong overdoses,so knew what to expect and wasn't bothered.
It just made am drowsy and in a couldnt care less way [like having a little morphine] and it was a good thing had happened as all the residents who live in the downstairs unit decided to have their meltdowns,and also the usual banging of the doors,stereo up full etc.
Am actually going to see if the CPN could get the tegretol increased until am can get the new medications added,as there hasn't even been a sign of the neuro appointment letter yet.
It was the stupid bastard with a crap short term memory over dose.
Tonight staff were giving am last medication of the day,and am had the usual big tegretol with small tegretol,and a red and white,due to having a short short term memory,am had forgotten had just taken the big tegretol tablet,and there was one lying down,so took it.
The staff started looking for it,and said it had fell out of the packet [on big plastic sheets of tablets] and wanted to know if am was hiding it.
Shit.
Am have been on different forms of tegretol since teenage years,and have had quite a lot of wrong overdoses,so knew what to expect and wasn't bothered.
It just made am drowsy and in a couldnt care less way [like having a little morphine] and it was a good thing had happened as all the residents who live in the downstairs unit decided to have their meltdowns,and also the usual banging of the doors,stereo up full etc.
Am actually going to see if the CPN could get the tegretol increased until am can get the new medications added,as there hasn't even been a sign of the neuro appointment letter yet.
Tuesday, 24 June 2008
Have had some good news...
Today,am had two lots of good news,which has helped a shit day seem a lot better.
The National Autistic Society sent one of their staff around to say am have been awarded more days with their residential support staff.
She wanted to tell am,but am was told was too out of it [in own mind/world/whichever stereotype want to use] for her to get the attention of,apparently she is going to be working with am as well.
The people who deal with benefit stuff also phoned staff today,and said am owed a big backpay of money from income support.
As long as the managers dont dare putting it towards the stupid care debt,am like this very much indeed.
Also,am was a 2-1 yesterday/had two staff from the national autistic society,they took am out in the NASs car,am always go to sale water park after pets at home but wasnt great at sale there this week,some sort of machinery started up in a nearby field as am and both the staff were walking down the paths,Dawn later said it like helicopters although said it was a tractor.
am had gone into severe meltdown and shutdown so was good there were two staff this week,when am came around from it,am heard strangers stopping and asking if am was ok and one stranger offered his phone without asking,am didnt need anymore help but it is nice that they offered help,am often get offered help,is this a Manchester thing?
Am was restrain walked back to the car by them both and Dawn drove to Jacksons boat pub just down from the car park and brought all drinks of pepsi to the car,am ended up covered in most of it as post meltdown am cant swallow well,am got hold of Dawns finger and tried to pick nose with it,she said she thought am just wanted to look at it!
Am had also covered self and bedroom in johnsons baby powder,as am like the smell of it a lot, and tried to cover Dawn in it,but she was too quick,and stole the bottle off am,nice end to a day.
Today,had had a meltdown because of staff changes,am had been told all day yesterday who was coming on this morning and they phoned in sick this morning,it set am off instantly,am was also sent into another meltdown because of the usual residents banging doors all day and being allowed to get away with it.
Shitty day,maybe baby powder shower will make it better.
The National Autistic Society sent one of their staff around to say am have been awarded more days with their residential support staff.
She wanted to tell am,but am was told was too out of it [in own mind/world/whichever stereotype want to use] for her to get the attention of,apparently she is going to be working with am as well.
The people who deal with benefit stuff also phoned staff today,and said am owed a big backpay of money from income support.
As long as the managers dont dare putting it towards the stupid care debt,am like this very much indeed.
Also,am was a 2-1 yesterday/had two staff from the national autistic society,they took am out in the NASs car,am always go to sale water park after pets at home but wasnt great at sale there this week,some sort of machinery started up in a nearby field as am and both the staff were walking down the paths,Dawn later said it like helicopters although said it was a tractor.
am had gone into severe meltdown and shutdown so was good there were two staff this week,when am came around from it,am heard strangers stopping and asking if am was ok and one stranger offered his phone without asking,am didnt need anymore help but it is nice that they offered help,am often get offered help,is this a Manchester thing?
Am was restrain walked back to the car by them both and Dawn drove to Jacksons boat pub just down from the car park and brought all drinks of pepsi to the car,am ended up covered in most of it as post meltdown am cant swallow well,am got hold of Dawns finger and tried to pick nose with it,she said she thought am just wanted to look at it!
Am had also covered self and bedroom in johnsons baby powder,as am like the smell of it a lot, and tried to cover Dawn in it,but she was too quick,and stole the bottle off am,nice end to a day.
Today,had had a meltdown because of staff changes,am had been told all day yesterday who was coming on this morning and they phoned in sick this morning,it set am off instantly,am was also sent into another meltdown because of the usual residents banging doors all day and being allowed to get away with it.
Shitty day,maybe baby powder shower will make it better.
Thursday, 19 June 2008
Flesh biter? autistic friendly gloves might be of help
Have mentioned this on WP before,but haven't here so will do in case anyone would eventually be interested.
Am slowly getting around a gloves project am doing with staff,especially for hand biters who have extra sensory needs,aka autists,SIDers etc,and am hoping to give the finished pair to somewhere that could make them/sell them,possibily even the NAS could want something to do with them,haven't asked Dawn or Hayley yet.
Hand biting is common in Autists,and gloves are often used as an aide for it,but there aren't any that are based on the sensory needs of autists,neither have they been designed for teeth contact.
Am used very thick full length gloves for years [took them off dad] but after changing to laptops,found that the tracking pad didn't sense the movement,so changed to part finger gloves and this is the type am looking at making,as they have the long term useability as well as protection.
Sister will be putting them together,she's got a machine to do it with.
The main things am thinking about before messing about with any material are:
If have any other needs that should be thought of,please post them here,and post what sort of things would like to see with a pair of autist friendly gloves,and what things would hate to see.
Am slowly getting around a gloves project am doing with staff,especially for hand biters who have extra sensory needs,aka autists,SIDers etc,and am hoping to give the finished pair to somewhere that could make them/sell them,possibily even the NAS could want something to do with them,haven't asked Dawn or Hayley yet.
Hand biting is common in Autists,and gloves are often used as an aide for it,but there aren't any that are based on the sensory needs of autists,neither have they been designed for teeth contact.
Am used very thick full length gloves for years [took them off dad] but after changing to laptops,found that the tracking pad didn't sense the movement,so changed to part finger gloves and this is the type am looking at making,as they have the long term useability as well as protection.
Sister will be putting them together,she's got a machine to do it with.
The main things am thinking about before messing about with any material are:
- The colours-choosing the right colours that wont overload visual perception of autists
- The materials-making sure they feel great in contact with the skin
- How tough they are-making sure they are made to last but fully bendable.
If have any other needs that should be thought of,please post them here,and post what sort of things would like to see with a pair of autist friendly gloves,and what things would hate to see.
Thoughts...and stuff
The managers must have been smoking something when they gave am a placement here, what other reason is there for putting am in one of the most sensory overloading parts of Manchester,in a residential home with a resident who likes nothing better than banging things all day?
She likes to slam her wardrobe door and pulls out and slams her draws fast and loud -she will do this all day,whilst shouting to herself,unless staff stop her.
Her room happens to be right under this one.
There was the talk of soundproofing the place a while ago,but because they're looking for a specialist home for am they're expecting am to put up with it till then-even if it takes a long time to get moved.
Yesterday was one of the worst experiences of it ever,she kept slamming her draws and door from morning till night with a few breaks in between, and staff only bothered to do anything when am went into meltdown,had been head banging on the wall all day [controlled] though not sure if was trying to communicate about what was going on,if it was just the affect the banging was having on am or some other reason.
She slams them so heavily that the whole room shakes.
Am had a walk planned with staff at night and had tried to put as much strength together as possible after the early meltdowns, and headbanging to make sure could get out as its the one time in the day am able to without getting too overloaded,but the lady maxes it-she increases the power in her banging,and the randomness of when her bangs happen,another meltdown,
another much needed daily trip out of the house wasted,a pile of backed up overload made bigger,and added sickness and extreme tiredness.
She is not the only one here who likes noise,another resident has a powerful hifi and every evening [around the time everyone else starts to quieten down] he puts his hifi on and shakes the house with the bass from it.
am always used the time everyone else settled down [turned sound down,stopped making noise etc] to recover as much strength as possible.
Am had had a lot of meltdowns,head banging and self injury before staff worked out what was causing it,they make am out to be a burden to him and see it as wanting own way and control over other residents,am got so fed up with the way am treated about something am cannot help,am 'abscond' everytime he puts his stereo on,it means am cannot be called a burden if he is not made to turn it down,am will be hidden in the usual spot,and end up meltdowning or cutting up flesh with sharp stones,glass,screws,whatever can find on the ground until am dragged in by staff team.
Am dont think bad of either residents-the lady is old and isn't able to know the noise she makes,and the male is just doing what a lot of others do,but am wish staff and in fact anyone else would understand this problem more,what they say and what they actually do are different things.
Am wish staff were able to experience the sensory difficulties that am do,just so they would then be able to understand it's not about control,being difficult or worse words than that,maybe then they would start to realise autists weren't put on this planet to burden them.
The autism specialists used to emulate all sensory difficulties during autism training with staff,but as both of them left it's mostly an untouched subject apart from Dawn giving them some training.
To quote the great Dream Theater:
"To those who understand, I extend my hand
To the doubtful I demand, take me as I am
Not under your command, I know where I stand
I won't change to fit your plan, Take me as I am"
She likes to slam her wardrobe door and pulls out and slams her draws fast and loud -she will do this all day,whilst shouting to herself,unless staff stop her.
Her room happens to be right under this one.
There was the talk of soundproofing the place a while ago,but because they're looking for a specialist home for am they're expecting am to put up with it till then-even if it takes a long time to get moved.
Yesterday was one of the worst experiences of it ever,she kept slamming her draws and door from morning till night with a few breaks in between, and staff only bothered to do anything when am went into meltdown,had been head banging on the wall all day [controlled] though not sure if was trying to communicate about what was going on,if it was just the affect the banging was having on am or some other reason.
She slams them so heavily that the whole room shakes.
Am had a walk planned with staff at night and had tried to put as much strength together as possible after the early meltdowns, and headbanging to make sure could get out as its the one time in the day am able to without getting too overloaded,but the lady maxes it-she increases the power in her banging,and the randomness of when her bangs happen,another meltdown,
another much needed daily trip out of the house wasted,a pile of backed up overload made bigger,and added sickness and extreme tiredness.
She is not the only one here who likes noise,another resident has a powerful hifi and every evening [around the time everyone else starts to quieten down] he puts his hifi on and shakes the house with the bass from it.
am always used the time everyone else settled down [turned sound down,stopped making noise etc] to recover as much strength as possible.
Am had had a lot of meltdowns,head banging and self injury before staff worked out what was causing it,they make am out to be a burden to him and see it as wanting own way and control over other residents,am got so fed up with the way am treated about something am cannot help,am 'abscond' everytime he puts his stereo on,it means am cannot be called a burden if he is not made to turn it down,am will be hidden in the usual spot,and end up meltdowning or cutting up flesh with sharp stones,glass,screws,whatever can find on the ground until am dragged in by staff team.
Am dont think bad of either residents-the lady is old and isn't able to know the noise she makes,and the male is just doing what a lot of others do,but am wish staff and in fact anyone else would understand this problem more,what they say and what they actually do are different things.
Am wish staff were able to experience the sensory difficulties that am do,just so they would then be able to understand it's not about control,being difficult or worse words than that,maybe then they would start to realise autists weren't put on this planet to burden them.
The autism specialists used to emulate all sensory difficulties during autism training with staff,but as both of them left it's mostly an untouched subject apart from Dawn giving them some training.
To quote the great Dream Theater:
"To those who understand, I extend my hand
To the doubtful I demand, take me as I am
Not under your command, I know where I stand
I won't change to fit your plan, Take me as I am"
Sunday, 15 June 2008
Autism,out and about
After mum brought am home in a taxi tonight,am was thinking of some of the top hates that am experience,when out of the home,and yes,taxi is one of them.
So here's a a small selection of a very long list!
*Taxis.
-These are the main form of travel am use,besides car [and walking],but it is a battle with the drivers of them because they do not understand severe sensory [in this case,hearing] problems and the need to have the radio turned off,despite family or staff telling them am have autism and cant cope with the radio [music/talking radio,not the radio they use to contact other drivers] being on in a car.
Some of them say 'cant she put those head phones on',they mean the ear defenders am have- which am wearing at the time,so staff say am wearing them,then they say,'well cant she put ear plugs in',well being the pyschics that they seem to be,am already wearing them,and their radio is still making am meltdown.
It can take a lot of arguing from staff and their car getting head banged before they switch it off,am should just get another taxi instead as they dont deserve the money.
*Cues/ques [not sure how to spell it]
-Who exactly would like them.
For an autist,these can be extremely challenging in many ways,with cues in different places being worse than others.
One of the worst types of cues,is the type at post offices,as if the place isn't torturing enough,the cues are forced into line by barriers so are unable to get out until get to the front.
There is already enough overload in the place,but add the noise from those in front,and those behind and it is unbearable.
The last time am ever went in one am ended up in meltdown as some screaming things had joined the back and there was a shouting lady at the front,am barged through the whole cue in front,the only reason am had to go in one is because am not allowed to be left on own and had to go in with staff,it was to pay a care bill,it is partly thanks to the inaccessibility of post offices that am have the huge debt to the council as they wouldnt take the payment any other way,the post office is disability friendly when it comes to physical needs,but not others,maybe it's time to get the DDA at them [and the council].
*Communicating with shop assistants.
When am went to get a new laptop earlier this year at PC world,as soon as the assistant realised am was NV,she said everything to the staff who was with am,and she knows nothing about computers,am was using PDA to ask if they had the toshiba equium two gig ram deal laptop left,and as soon as the staff said it to the lady,she kept trying to sell some crap norton 360 software and windows office software.
Am wrote out on the PDA,no...use AVG free and open office,and she then said that they were both unsuitable for use with vista and they dont work-am had to tell her-no they weren't, they were installed on dads vista pc and they were going fine,but she kept trying to force that other laggy crap.
She kept saying to the staff with am, 'tell her....' FFS,when did am become deaf? am can hear every bit of crap she is saying.
She then took the staff to the side,and said 'she needs this...',and the stupid woman had added it onto the bill,the staff with am said she thought she was giving it for free as part of the deal.
it was took back the next day and a complaint was made,so they gave a free months of insurance [am forced to use computer insurance by home managers due to a habit of laptops getting in the way of meltdowns].
Shop assistants are not all bad,there are some really nice ones,but of the bad ones,they need to learn- not to force themselves on customers,dont assume all customers are idiots about whatever it is they are buying,dont keep following them and bothering them and dont treat disabled customers who have support staff like they're invisible [eg,showing things to staff instead of buyer].
*Feeling like are cursed.
-Wherever am go outside,something that sets am off-always happens,it doesn't happen before,it doesn't happen after,it always happens just as am next to it.
For example,car alarm going off,house alarm going off,lawn mower/leaf blower/other tools starting up,the beeping noise of things reversing [thats what staff said it is],building work going on,a plane going over,a dog barking,those big drills to get up concrete [staff said theyre called jack hammers?] a child screaming,a teenage girl doing.....those teenage girl noises..and so on..they all start up just as am go past,am really do think am cursed because it could happen at any time but it happens at that exact moment am go past.
*Doctors appointments.
-Especially as they are now mostly big super health centres,they are extremely overloading and am always used to leave there in a post meltdown state.
Am have a very supportive GP which is good and she will come out and see am for appointments,which is usually reserved for emergency appointments,so the only time am have had to go there anymore is to pick up the paper thing for emergency supply of painkillers.
They are making doctors surgeries more and more autistic unfriendly by making them into these huge health centres,with screeching beeping noises coming from those electronic boards to wake up whoever has gone to sleep because of the long time they've been waiting for their appointment,the screeching children,echoeing of the building,whistling,all the noises from everything grouping together and attacking,waiting too long for appointment,and depending on the GP-not being explained to slowly and clearly enough or given enough time to let things process etc,they were better when they were small doctors surgeries with hardly anything in them.
*Road works.
-Am hate road works for a few reasons,not only for their torturing noise,but also for their routine disrupting abilities.
They can completely change the way the traffic goes,when have always gone that way,it is a major set off for am especially at the moment-there are a lot of them where am live as they are rebuilding the area.
There was no warning they were going to happen either,and are supposed to be here for a while.
Not good.
*Shops that play music.
-There is enough overload in them without adding to it.
*Places that ban wearing hoods.
-Am can understand they are trying to keep out the bad kids who try to hide their faces from camera,by banning hoods,but am wore these for years as extra protection over headphones,ear plugs and ear defs. and was suddenly dived on by a pack of red coats at the trafford centre,who treated am like a criminal,and demanded that am removed the hood there and then or would be restrained marched out of there by them.
Sister explained the disability side to wearing of the hood but they werent interested,and just as am was removing hood,a few muslim ladies wearing the entire islamic dress which only has a slit to see through [don't know what it is called] had walked past and were allowed to carry on.
Why is it perfectly ok to wear the full islamic dress at the trafford centre,but not ok to wear a hood over the ear defenders for disability reasons when face was on show at all times?
Again,it's another thing am should have got the DDA at,bastards.
So here's a a small selection of a very long list!
*Taxis.
-These are the main form of travel am use,besides car [and walking],but it is a battle with the drivers of them because they do not understand severe sensory [in this case,hearing] problems and the need to have the radio turned off,despite family or staff telling them am have autism and cant cope with the radio [music/talking radio,not the radio they use to contact other drivers] being on in a car.
Some of them say 'cant she put those head phones on',they mean the ear defenders am have- which am wearing at the time,so staff say am wearing them,then they say,'well cant she put ear plugs in',well being the pyschics that they seem to be,am already wearing them,and their radio is still making am meltdown.
It can take a lot of arguing from staff and their car getting head banged before they switch it off,am should just get another taxi instead as they dont deserve the money.
*Cues/ques [not sure how to spell it]
-Who exactly would like them.
For an autist,these can be extremely challenging in many ways,with cues in different places being worse than others.
One of the worst types of cues,is the type at post offices,as if the place isn't torturing enough,the cues are forced into line by barriers so are unable to get out until get to the front.
There is already enough overload in the place,but add the noise from those in front,and those behind and it is unbearable.
The last time am ever went in one am ended up in meltdown as some screaming things had joined the back and there was a shouting lady at the front,am barged through the whole cue in front,the only reason am had to go in one is because am not allowed to be left on own and had to go in with staff,it was to pay a care bill,it is partly thanks to the inaccessibility of post offices that am have the huge debt to the council as they wouldnt take the payment any other way,the post office is disability friendly when it comes to physical needs,but not others,maybe it's time to get the DDA at them [and the council].
*Communicating with shop assistants.
When am went to get a new laptop earlier this year at PC world,as soon as the assistant realised am was NV,she said everything to the staff who was with am,and she knows nothing about computers,am was using PDA to ask if they had the toshiba equium two gig ram deal laptop left,and as soon as the staff said it to the lady,she kept trying to sell some crap norton 360 software and windows office software.
Am wrote out on the PDA,no...use AVG free and open office,and she then said that they were both unsuitable for use with vista and they dont work-am had to tell her-no they weren't, they were installed on dads vista pc and they were going fine,but she kept trying to force that other laggy crap.
She kept saying to the staff with am, 'tell her....' FFS,when did am become deaf? am can hear every bit of crap she is saying.
She then took the staff to the side,and said 'she needs this...',and the stupid woman had added it onto the bill,the staff with am said she thought she was giving it for free as part of the deal.
it was took back the next day and a complaint was made,so they gave a free months of insurance [am forced to use computer insurance by home managers due to a habit of laptops getting in the way of meltdowns].
Shop assistants are not all bad,there are some really nice ones,but of the bad ones,they need to learn- not to force themselves on customers,dont assume all customers are idiots about whatever it is they are buying,dont keep following them and bothering them and dont treat disabled customers who have support staff like they're invisible [eg,showing things to staff instead of buyer].
*Feeling like are cursed.
-Wherever am go outside,something that sets am off-always happens,it doesn't happen before,it doesn't happen after,it always happens just as am next to it.
For example,car alarm going off,house alarm going off,lawn mower/leaf blower/other tools starting up,the beeping noise of things reversing [thats what staff said it is],building work going on,a plane going over,a dog barking,those big drills to get up concrete [staff said theyre called jack hammers?] a child screaming,a teenage girl doing.....those teenage girl noises..and so on..they all start up just as am go past,am really do think am cursed because it could happen at any time but it happens at that exact moment am go past.
*Doctors appointments.
-Especially as they are now mostly big super health centres,they are extremely overloading and am always used to leave there in a post meltdown state.
Am have a very supportive GP which is good and she will come out and see am for appointments,which is usually reserved for emergency appointments,so the only time am have had to go there anymore is to pick up the paper thing for emergency supply of painkillers.
They are making doctors surgeries more and more autistic unfriendly by making them into these huge health centres,with screeching beeping noises coming from those electronic boards to wake up whoever has gone to sleep because of the long time they've been waiting for their appointment,the screeching children,echoeing of the building,whistling,all the noises from everything grouping together and attacking,waiting too long for appointment,and depending on the GP-not being explained to slowly and clearly enough or given enough time to let things process etc,they were better when they were small doctors surgeries with hardly anything in them.
*Road works.
-Am hate road works for a few reasons,not only for their torturing noise,but also for their routine disrupting abilities.
They can completely change the way the traffic goes,when have always gone that way,it is a major set off for am especially at the moment-there are a lot of them where am live as they are rebuilding the area.
There was no warning they were going to happen either,and are supposed to be here for a while.
Not good.
*Shops that play music.
-There is enough overload in them without adding to it.
*Places that ban wearing hoods.
-Am can understand they are trying to keep out the bad kids who try to hide their faces from camera,by banning hoods,but am wore these for years as extra protection over headphones,ear plugs and ear defs. and was suddenly dived on by a pack of red coats at the trafford centre,who treated am like a criminal,and demanded that am removed the hood there and then or would be restrained marched out of there by them.
Sister explained the disability side to wearing of the hood but they werent interested,and just as am was removing hood,a few muslim ladies wearing the entire islamic dress which only has a slit to see through [don't know what it is called] had walked past and were allowed to carry on.
Why is it perfectly ok to wear the full islamic dress at the trafford centre,but not ok to wear a hood over the ear defenders for disability reasons when face was on show at all times?
Again,it's another thing am should have got the DDA at,bastards.
Thursday, 12 June 2008
The Resident awards
Thought it was about time, especially about the staff as they get more bad than good.
Click reply to this post and post own entries!
THE MOST UNDERSTANDING [OF AUTISM AND SELF] AWARD.
-GOES TO: Dawn.
-Dawn is NAS residential home staff who comes here to support am every week.
It takes am a while to get used to new staff,but with Dawn it took less.
She understood am without having to get things wrong for years first [like with learning disability services] she respects everyone equally no matter the level of autism and disability.
She is a truly awesome staff!
THE NICEST STAFF AWARD.
GOES TO: Neil.
-Neil is very nice and has never judged am,even when he gets caught in the meltdowns or when nasty staff have told him untrue things,he has always believed in am.
He has never seen am as a burden [one of..two maybe who havent] and he fought to get am high rate mobility of DLA and a motability car,which would have put anyone else off because of the amount of work involved in it.
He is also am keyworker,and has fought to get am more help for the meltdowns.
THE NICEST NIGHT STAFF AWARD.
GOES TO: Bolla.
-Am often have problems with agency staff [and so rarely ever have them] but Bolla is from an agency and is nothing like other staff am have known from the same place.
Bolla is very nice and understanding,she also takes am out at night for a walk,as she knows am housebound almost all day from the day time overload so she takes am out at night and GFB often comes along to for the whole walk.
She never judged am from the first time she came here,even when the bad staff were gossiping to her about am and staff they dont like.
She used to work as day staff here [before am lived here] but changed to night staff because she got fed up with all the nastiness off the bad staff.
THE NICEST RESIDENT AWARD.
GOES TO: David.
-am share upstairs with David whilst everyone else is together downstairs [David is overloaded by noise as well],David is very nice and is never nasty to anyone.
He is so nice,he has a problem with saying he doesn't like something,he doesn't like to be bad to others.
He always looks out for am,and makes sure am ok,and am hate being a burden on him.
David has DS [downs] and wrongly gets treated like he can't do anything from certain staff,so he doesn't get to do the things he wants,for example,he got interested in laptops/computers after seeing am using them and wanted one,and the automatic line from some was 'he's not intelligent enough'....they see the downs 'look' and not him instead,he does go through a lot yet he doesn't fight back over it,he is the nicest resident am know here.
THE BEST SPECIALIST AWARD.
GOES TO: Andrew.
-Andrew was the autism specialised speech therapist am had,until he moved out of the city,and no one has ever replaced him,in a way,no one really could replace him.
Andrew did so much for am,more than just speech therapy,am had known him for years and in that time along with Donna [second social worker],he had done more than own family had.
He did everything from getting respite and institution placement,to training staff about am and autism,nothing in routine/life was allowed to be changed or removed without it being agreed with first by Andrew.
The staff of the institution used to say to am,that Andrew was horrible but am never had that at all with him,they only saw him as horrible because he complained about them for what they did to am a lot.
So yes,awesome guy,need more like him in the Autism world.
THE GFB AWARD FOR RESIDENT KITTEHS.
GOES TO: Smudge.
-Smudge is a sixteen year old tortishell and white lady-cat and she lives down stairs.
She still looks like a older kitten and acts like one.
She has a boyfriend [GFB] and he uses it as an excuse to sneak in when staff open the door and steal her food all the time.
She likes attention,and sleeping.
Click reply to this post and post own entries!
THE MOST UNDERSTANDING [OF AUTISM AND SELF] AWARD.
-GOES TO: Dawn.
-Dawn is NAS residential home staff who comes here to support am every week.
It takes am a while to get used to new staff,but with Dawn it took less.
She understood am without having to get things wrong for years first [like with learning disability services] she respects everyone equally no matter the level of autism and disability.
She is a truly awesome staff!
THE NICEST STAFF AWARD.
GOES TO: Neil.
-Neil is very nice and has never judged am,even when he gets caught in the meltdowns or when nasty staff have told him untrue things,he has always believed in am.
He has never seen am as a burden [one of..two maybe who havent] and he fought to get am high rate mobility of DLA and a motability car,which would have put anyone else off because of the amount of work involved in it.
He is also am keyworker,and has fought to get am more help for the meltdowns.
THE NICEST NIGHT STAFF AWARD.
GOES TO: Bolla.
-Am often have problems with agency staff [and so rarely ever have them] but Bolla is from an agency and is nothing like other staff am have known from the same place.
Bolla is very nice and understanding,she also takes am out at night for a walk,as she knows am housebound almost all day from the day time overload so she takes am out at night and GFB often comes along to for the whole walk.
She never judged am from the first time she came here,even when the bad staff were gossiping to her about am and staff they dont like.
She used to work as day staff here [before am lived here] but changed to night staff because she got fed up with all the nastiness off the bad staff.
THE NICEST RESIDENT AWARD.
GOES TO: David.
-am share upstairs with David whilst everyone else is together downstairs [David is overloaded by noise as well],David is very nice and is never nasty to anyone.
He is so nice,he has a problem with saying he doesn't like something,he doesn't like to be bad to others.
He always looks out for am,and makes sure am ok,and am hate being a burden on him.
David has DS [downs] and wrongly gets treated like he can't do anything from certain staff,so he doesn't get to do the things he wants,for example,he got interested in laptops/computers after seeing am using them and wanted one,and the automatic line from some was 'he's not intelligent enough'....they see the downs 'look' and not him instead,he does go through a lot yet he doesn't fight back over it,he is the nicest resident am know here.
THE BEST SPECIALIST AWARD.
GOES TO: Andrew.
-Andrew was the autism specialised speech therapist am had,until he moved out of the city,and no one has ever replaced him,in a way,no one really could replace him.
Andrew did so much for am,more than just speech therapy,am had known him for years and in that time along with Donna [second social worker],he had done more than own family had.
He did everything from getting respite and institution placement,to training staff about am and autism,nothing in routine/life was allowed to be changed or removed without it being agreed with first by Andrew.
The staff of the institution used to say to am,that Andrew was horrible but am never had that at all with him,they only saw him as horrible because he complained about them for what they did to am a lot.
So yes,awesome guy,need more like him in the Autism world.
THE GFB AWARD FOR RESIDENT KITTEHS.
GOES TO: Smudge.
-Smudge is a sixteen year old tortishell and white lady-cat and she lives down stairs.
She still looks like a older kitten and acts like one.
She has a boyfriend [GFB] and he uses it as an excuse to sneak in when staff open the door and steal her food all the time.
She likes attention,and sleeping.
Tuesday, 10 June 2008
OT health and safety craziness?
The OT [occupational therapist,or old trafford-which ever one prefer most and doubt its that last one] came last week and demanded? that a head board be put on the bed as there isnt a proper official one,for 'health and safety reasons' which is a bit stupid as they;ve all broken up in head banging fests and meltdowns,the old red padding am use now for a head board 'isnt good enough' for health and safety despite the fact it keeps am further away from the wall than a head board.
The last bed got knackered in a meltdown and the OT made sure the new one was a single duvan/divan whatever they're called,and had it stuck to the wall/padding panel [maybe nailed down,dont know how its been done] to stop am from pulling it out and getting underneath,but the bed has been put the wrong way around and the things the head board sticks on is at the wrong end.
But that doesn't stop health and safety,no way.....the OT has complained to the manager about it not being done yet and said it had to be got and stuck on today.
One of the staff went out with David today and ordered one from argos,not letting ignorance get in the way,they ordered it without finding out if am could tolerate the feel of it,as most of them are too painful,wood is the only one am go for,and not allowed the harder than wood ones because of head banging.
Might as well just pad the whole floor and sleep on it.....problem solved.
The last bed got knackered in a meltdown and the OT made sure the new one was a single duvan/divan whatever they're called,and had it stuck to the wall/padding panel [maybe nailed down,dont know how its been done] to stop am from pulling it out and getting underneath,but the bed has been put the wrong way around and the things the head board sticks on is at the wrong end.
But that doesn't stop health and safety,no way.....the OT has complained to the manager about it not being done yet and said it had to be got and stuck on today.
One of the staff went out with David today and ordered one from argos,not letting ignorance get in the way,they ordered it without finding out if am could tolerate the feel of it,as most of them are too painful,wood is the only one am go for,and not allowed the harder than wood ones because of head banging.
Might as well just pad the whole floor and sleep on it.....problem solved.
Monday, 9 June 2008
retreating for a bit
am going to be spending a lot less time on WP for a bit,due to being very unstable for the past few months because of a lot thats going on in life,and because of a users posts making head manic, though am not sure whether they had actually meant am in their posts now,and would apologise if that was true,but it still has worsened head,was already going through a difficult time and hating self for being such a problem to everyone else [being made to get stuck into that thinking again by staff here and family],so even though it usually would mean nothing,it pushed am further into self hating.
usually the self hating is mostly inside echolalia of what heard others say,over and over and over..
nothing will change until this whole nasty situation of living here changes,and a lot more.
though today overall was better..
am had 2-1 support staff from the national autistic society today,they have the NAS' car so took am to pets at home,got sam some royal canin sensitive cats biscuits [designed for cats who get diorreah from most food,found out about these from the cat magazine],a pile of tins of Applaws natural cat food [sams favourite wet food but can only find in pets at home or online],went for a drive to a big garden centre,had a meltdown there as the bastard thing had a powerful,humming fan system across the whole ceiling and music everywhere.
after recovering,went to sale water park,sat down on the side of the river,near jacksons boat pub? think thats what its called,one of the staff went and got pepsis for all,and am covered the staff in piles of grass as it had just been cut.
then drove to KFC, for the usual,got home,the staff had theirs, and then went.
am went outside a bit later with the regular staff to sit outside with GFB,he was in super attention seeking mode tonight though did not put in as much effort because of the heat.
usually the self hating is mostly inside echolalia of what heard others say,over and over and over..
nothing will change until this whole nasty situation of living here changes,and a lot more.
though today overall was better..
am had 2-1 support staff from the national autistic society today,they have the NAS' car so took am to pets at home,got sam some royal canin sensitive cats biscuits [designed for cats who get diorreah from most food,found out about these from the cat magazine],a pile of tins of Applaws natural cat food [sams favourite wet food but can only find in pets at home or online],went for a drive to a big garden centre,had a meltdown there as the bastard thing had a powerful,humming fan system across the whole ceiling and music everywhere.
after recovering,went to sale water park,sat down on the side of the river,near jacksons boat pub? think thats what its called,one of the staff went and got pepsis for all,and am covered the staff in piles of grass as it had just been cut.
then drove to KFC, for the usual,got home,the staff had theirs, and then went.
am went outside a bit later with the regular staff to sit outside with GFB,he was in super attention seeking mode tonight though did not put in as much effort because of the heat.
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