The Residential Autist

Medication upgrade,and meeting coming up

2008-07-10T10:38:00.000-07:00

GP yesterday upgraded the tegretol to the maximum allowed dose [2000 mg] ,but am having to start off with half of the upgrade first,and then upgrade it again in a month.

It's to help with the meltdowns/shutdowns and self injury,am still waiting to see neuro for the other meds.

Am hoping it will actually give am a little more tolerance with living there,am have been having a 'respite holiday' at dads/mums from tuesday till sunday this week,and the tablets are all being delivered to the home so am won't be able to start the extra one until sunday.

Am have been told that there is a big meeting going on on the eighteenth of july,between the residential staff,home and service managers,social worker,the NAS bosses,and Dawn if she doesn't have a 1-1 that day.

the NAS are going to be questioning them all about the abuse,state and neglect am left in,and the complete non understanding of autism/w HCN they have,about the complete unsuitability of that home/staff for am etc. and they are hoping to get agreement to move am from council residential care to NAS residential care.

A question- is this part of autism?

2008-06-30T14:13:00.000-07:00

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.

Things are going to get better

2008-06-30T12:18:00.000-07:00

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.

Overdose

2008-06-25T17:02:00.000-07:00

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.

Have had some good news...

2008-06-24T10:35:00.000-07:00

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.

Flesh biter? autistic friendly gloves might be of help

2008-06-19T17:12:00.000-07:00

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:

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

2008-06-19T05:14:00.000-07:00

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"

Autism,out and about

2008-06-15T18:58:00.001-07:00

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.

The Resident awards

2008-06-12T15:23:00.000-07:00

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.

OT health and safety craziness?

2008-06-10T15:24:00.000-07:00

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.

retreating for a bit

2008-06-09T14:13:00.000-07:00

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.

Meltdowns and shutdowns-under EEG

2008-05-30T16:33:00.001-07:00

Back in april,am stayed in hope hospital for another EEG only this time it was two nights/three days long and they were going to induce what they called 'attacks' as the neuro didnt want to use any terms that hadn't been medicalised yet.
Am had a mobile EEG box strapped to am,and a load of nasty wires and glue.
During the first 'attack' aka meltdown and shutdown,it was so severe it ripped off all the glued and taped down electrodes and pulled away scalp with it,it happened so quick,the machine was not able to read a lot of it,during the second MD/SD,it had happened that night without any electrodes attached as the neuro had gone home for the night.
During the third MD/SD,there were some electrodes attached.

It is an experience to forget,but the results of the EEG came this week.
The neuro has sent the staff a copy of the letter that they have sent to the doctor so it is all in doctor speak,but am took a photo of the letter and gave it to sister over MSN [who knows about this stuff due to her job].
The Neuro said on the bottom of the letter: "the conclusions were that the EEG was abnormal showing focal slow waves and some sharp waves over the right mid anterior temporal area."
Sister said the right mid anterior temporal area was around the ear/just above,and that part controls hearing,speech and other things [forget the rest].

Am have an appointment coming up with the neuro about the results and medication stuff,though just from the little bit sister said,am think it is great that an EEG could pick that up and know exactly where it was.
And am hoping am finally will be able to get some decent meds added,to numb the senses and to reduce meltdowns,it is very bad how in the UK,have to fight to get even melatonin when have severe sleep problems and they are able to prescribe it yet choose not to,yet in america,drugs can be prescribed and got so easily.
The LD CPN am have is coming with am and keyworker to the neuro appointment so that should be even more backup,but the neuro is probably one of the most understanding.

It would be great? to see what results others have whilst having MDs/SDs under EEG.

GFB awareness week

2008-05-30T12:30:00.001-07:00

Am have decided to make it GFB awareness week here,as today was the first time in ages am have been able to be with him due to the extra meltdowns everyday,and also because he has been put on a special diet by his family and their vet-so the only thing left that he really likes is awareness of him and attention,if he isnt getting it,he will shout for it,and when hes getting it,he will dribble all over,and then suck the wettest spot.

he likes tight hugs,belly rubs,head stroking,lying down on the path with him so he can get close,dribbling etc.
he also likes to fart and clean his bum a lot unlike other cats,he likes to spray wee on things to but he gets a lot of splash back and ends up getting it on his furr,it smells like dads aftershave.

he has a girlfriend called Smudge,she lives here although in a different unit,she is a old lady cat but doesnt look it,she is a tortie and white,she acts like a kitten and can jump high,she will only eat one type of cat food and one flavour,she didn't like GFB for a long time but she likes him now,she lets him eat her dinner if he sneaks in.

GFB gets a lot of calls for fights off other toms,they will come and scream at him right in his face,and he will just sit there and do nothing,he doesn't fight or attack at all.

here is the most recent photos of him [taken tonight] and to answer any questions-no he's not on 'nip, no,he's not available and yes,he welcomes dinner dates [minus the cat though,just the dinner]:
GFB sat on knee

GFB dancing on knee,slowly sliding off

So if anyone would like to do am a favour and leave nice messages for him whether in english or cat,please do here and am will make sure he sees them.
he could reply himself,but itd only be 'FFFFFFFFFFFFFFFFFFGGGGGGGGGGHHHHHHHHJJJJJJJKKKKKK....',typing and most human language is not his thing.

National Autistic Society-outreach support staff

2008-05-06T15:40:00.000-07:00

Am finally have staff from the NAS!
the lady works in the NAS' residential homes but also does the out reach support where she comes into other residential homes or peoples own homes and supports them.
She is very very nice,she is coming every monday until am have got her into routine,then it will be twice a week.
She also has the use of the national autistic societies' own car to take am anywhere am want,
which will be good until am get own motability car.
She is very understanding and instantly understood am,where am have known staff in the learning disability service for years and they still treat am like shit because of their selective ignorance [or selective stupidity,dont know which].

Am have been told by some staff that she is training the staff here on how to treat,work and cope with am [as all the autism specialists have left the LD service and none have replaced them yet].
Though am cannot see that working because the worst staff here did not listen to autism specialists before and they carried on being the abusive ignorant bastards that they are.

Anyway,she is very nice,she treats everyone on the autism spectrum as individuals and does not see the stereotypes,and thinks how am have been treated by LD staff over the years is disgusting.

The NAS are great!

It's official-the council are crapper than crap

2008-05-06T15:15:00.000-07:00

Some might think this council/borough is great,some might think it's awesome.
These are humans who have not yet experienced their support and care services.

Trafford council has been running up a care bill debt for am since am lived in the institution,
and they have not been taking the money.
They have now just said [this is after it becoming a huge debt,thats what home staff and one of the council has said anyway] the reason its getting worse is because am do not go in post offices for it to get paid-for one thing,it should not matter as staff who are going are supposed to take the stuff,
and another thing,am cannot cope with post offices for both sensory reasons and the long cues.
The blame is being put on am,when they have never mentioned it.
They said they are trying to set up a 'direct debit' account now,bit late isn't it.

They really are bad.
They said this is the reason am do not have the motability car [a ford focus] yet,because they are trying to get the debt paid off.
What right have they got taking the disability benefits am get and putting it towards the debt they caused? DLA is supposed to be used for disability needs only and debt that was caused by someone else is not one of them.
They are making a poor quality of life even poorer by not getting am the car yet,am would like to see them have to stay inside day in day out and still be affected inside [cant go outside,cant stay inside,it's not nice].

Finally-new padding fitted

2008-04-24T08:48:00.000-07:00

The new padding was fitted today.
They put on a big layer of wood onto the wall first,and then the padding was attached to it,as it can come off,and the cover can come off and be washed.
The padding is never as high as head height because it's written in guidelines that staff will restrain am lying down if am headbanging etc.

The material and padding both look great and feel great.

Here are some photos of the new padding [the blue and purple looking one is showing the
back of the padding,can see some velcro there a little bit]:

This is the old padding-

It is now very old,falling apart,plasticy and noisy if sitting near it on bed.
The padding which has been custom made,is so much better.

Another adaption they were going to make was full professional sound proofing
and triple glazing windows, but it is looking like they are moving am to
another res.home instead and getting the work done there.

And am still waiting for the motability car, the council have been trying to
force am pay a debt off that they caused [a care bill, which they let build up before
looking for payment] first.

OT visit

2008-03-10T14:48:00.000-07:00

Finally got the first look at the new custom made padding for bedroom today,it has been in the making since early december.
The OT and designer came with it,to see how it fits,but part of it was too long so it's had to go back for a slight change.

They have to drill hooks [?] along the walls so the velco strips can be put through and then attached to the bed so am do not fall down in a meltdown and it protects from head banging as well.

The colour is great,had chose it from a book of samples the designer had,it's a purple check [?] design.

He said the cover can be taken off and washed easily,but that they had designed it around hospital/metal style bed [am not allowed the metal type because of injury from meltdowns] and need to change some of the loops so they wrap around such a wide wooden plank bed.

It looks so much better than the current protection that is used now,as it's been used for years-and is falling apart [a special mattress,and loads of pillows].
They are arranging a date for next week to come,will be out whilst all the banging and drilling is going on.

Will put a photo of it on here when it's all finished,it will be far easier on eyes than the bright red padding already.

Laptop

2008-03-10T11:27:00.000-07:00

Not very Autism related,but am going to be off the internet for some days again [last time it was a few weeks],as am bringing back laptop to PC world tomorrow/tuesday.

Bought it last week,it's a crappy Advent laptop,feels cheap and nasty,looks cheap and nasty,it's got one dead pixel in a very obvious part of the screen,the space bar is almost knackered [it sticks], and the battery does not hold any charge at all.
Had only bought it because had been desperate to get back on internet and they were all out of every other laptop that could afford.

But PC world are delivering the original toshiba one am wanted [there had been six available on wednesday,on thursday when went down with money,they said there was none left] as there is one left in another store and the offer on it ends tomorrow.
No idea how long it's going to take to sort it all out,don't know whether will be getting the laptop this week before going to family home at weekend or not,so will be without main communicative source until at least later this week .

The acer travelmate [that got its motherboard damaged in a meltdown] is having its memory taken out and put into the new laptop [if slots are available],and the techy is buying the rest of it off am.
New laptop will have extra insurance taken out,as well as being under the homes' insurance for extra safety,so if it gets in way of a meltdown again,it can be fixed or replaced easier.

Motability car

2008-03-10T08:57:00.000-07:00

Have found out today that am finally going to be getting very own car [from the Motability scheme] around end of April,for those who do not have in own country or do not know of this service,motability cars can be applied for if have severe need for own transport,the person also needs to be recieving high rate mobility component of DLA.

Am have been told for a long time that the mobility component covers all the taxis am need so do not need a motability car,which is rubbish because it does not cover near enough.
So the home and service managers have finally listened to staff and are sorting it out [Mark who lives here recently got one,which was wheel chair adapted for his manual chair,but it doesn't have enough space] .

It's the best news have heard in a long time,am will finally get at least some quality of life with a car and staff will not have to argue with drivers to turn off radios anymore because it won't be a taxi,am will be able to go to parks,countryside and shops for food that doesn't use up money too quick as there is only one little shop here now that am able to cope with going in,it's all stuff many people treat as easy everyday things,but am have been unable to access.
The car will be insuranced to all staff,it would be nice if it could insuranced to anyone as then Rach or Chris could drive it to.

Am have asked for a Ford Focus as it's the car am used to rent a lot through the council with another Autie to go to parks,and like the shape of it a lot,but staff have said it all depends on how much money it is.

Am getting the motability car based on all non physical/mobility disabilities [although am do have a mild CP like impairment in left leg,it's nothing in comparison and it isn't on any DLA or income support forms] ,which should be proof enough that adult Auties [and possibly Aspies,at least should be because DLA isn't supposed to be judged on label] can get motability cars without actually having a physical mobility related disability.
Am recommend applying for one if have high rate DLA and severe complex needs as a result of own disability [whether it's Autism,Aspergers,whatever]-get citizens advice or the NAS' new help service to sort it out.
It can give back some quality of life!

Sister training

2008-03-09T16:11:00.000-07:00

Last week/this week [not sure what to call it], sister went to London with some other staff from her work [as drugs councilors for Phoenix Futures] to do training on aggression,and the specialist who was doing it [not sure what type he was as she did not say] turned out to specialize in Autism.
Sister said she spoke to him in a break about Autism and talked about am for a while,he said what am had was called 'explosive autism'.
She said they then got onto the subject of both Leo Kanner and Hans Aspergers' work,then the autism spectrum and he said both Autism and Aspergers are seperated by very little in criteria and are really the same thing.
He actually said a lot more than that in better detail but sister couldn't remember anymore,she said it was very interesting,will text her for the specialists' name next week when phone has credit on it.

Have never heard the term 'explosive autism' before,has anyone else heard of it?

Assuming

2008-02-22T13:52:00.000-08:00

Some things about Autism/ASD forums. <><>>>>><><><><><><><><>
One of the things am hate about 'Autism'/'ASD' forums,is the assuming that all Autistic users are aspie or HFA.

And when people often write topics about Autism,they really mean hf aspergers,they write many topics on 'Autism is a difference,not a disability' -with something like 'Autistics shouldn't get disability benefits' attached,in the UK at least,a Autie or Aspie would not get DLA unless they had support needs,so it's not like they can get it just because of a label.

HFers do not speak for am,they do not speak for the whole spectrum,they cannot speak for the parents of Autistic children either,but the same for both ways also.
People on all ends of the spectrum have different experiences to the other,some things are shared,others seperate Autistics.
The cure issue is something am not against,as am would like a partial cure if one ever came along to remove what is keeping am in no quality of life,but leave the autistic core there.

Am not against idea of full cures,and think the choice should be there for those that want/need it,no one can tell another that they have to live with no quality of life and go through torture every waking day because some high functioners want it all to be seen as difference and not disability.

Am against the idea of assuming LFAers should be automatically cured,whilst aspies and HFAers should be given the choice [one common belief on WP that am have tried to speak against] ,as an LFAer,am believe am should have the choice just like any HFAer/Aspie and every other Autie who is able to communicate in some form should be able to choose [that is, if the time ever comes],people on the spectrum should be united against discrimination,not causing it at one another.

This comes back to the assuming that more obvious Autistics cannot possibly be using forums so do not exist on WP or anywhere else,so all are aspies,it doesn't help on WP either that the logo at the top says for aspergers syndrome,but the description at the index says for the whole spectrum and other things.

Am see Autism [meaning spectrum] as being both difference and disability,but further down it gets,the more disability and complex needs get added,why is it people have long campaigned for Autism to not be seen as the static classic autism only label,and be seen as a spectrum that differs greatly,and now it is being seen that way, some of them only want it to be seen as the static 'difference and not disability'?

People should not be offended at idea of cure [if it ever actually becomes possible] because the idea of the cure is meant for those who go through very tough challenges with their autism and have a poor quality of life as a result.
It would not be used on people with higher functioning forms,government think in funding [am have heard this often enough off council staff who work here] and would only pay for those most affected enough to make it worth it,it's about money and not humans to them.

Offence should be directed at the lack of support services for autie and aspie adults,the lack of understanding for autie and aspie adults,and the support acceptance of everyone on the spectrum,no matter whether they're LFA with profound MR,up to those who are on the spectrum but don't have enough traits to be diagnosed.

Another thing.......NTs.why so much hate to people with an NT brain?
Whether are NT or Autistic,it's flesh,bones,blood,and the squidgy bits inside that make NT and Autistic the same,they are not different in that way,so why let such a pointless difference change the way think about humans?
People who think the only cruel bastards out there are NTs clearly have not met enough Auties or Aspies yet,to end up meeting some of the Autistic edition.

Finishing,with a list of Autism facts/tips,whatever they would be called-where am use Autism,am also referring to Atypical Autism/PDDNOS.

Not all Autistic users of forums are hf or aspie,remember the lf/mf Auties,PDDNOS Auties and those who are on the spectrum but so lightly affected they don't have a label for them.
On forums,not everyone who doesn't hate the idea of a cure for Autism is a 'troll' or parent.
Not all Autistics can use computers or even like them [including aspies].
People with Autism or Aspergers can get benefits for support needs,if they are hfa/aspie it doesn't automatically mean they can work [there are lots of reasons why not,including complex needs] and they should not be abused for accepting SSD/SSI,DLA etc.
Auties and aspies all have an individual experience of Autism/Aspergers and so should not be considered the same as the next Autie and Aspie-treat them as them with their own set of difficulties,challenges and differences,and not as the manual criteria for Autism or Aspergers.

Birthday

2008-02-14T16:08:00.000-08:00

[Edited]
A non autism related post>>><<>><<><><><><

Have now got a xbox 360 [the limited edition halo 3 one,only because of the colour and not halo], Halo 3 and a great LCD HD TV to go with it-for birthday presents for self.
This would never have happened had the regular home manager [who hates am getting anything and has stopped am from getting an xbox since she became manager] not gone on holiday to America,as it's one of the others who has authorized it,thanks to her for going on holiday-could never have done this without her!

Halo 3 wouldn't work [and probably most 360 games] with other tv,because it's old,and wasn't NTSC speed? compatible,so they allowed am to get the TV today:

Gaming in high definition is great!
Have mostly being been playing Turok [demo] which looks very great-despite using outdated graphics, and Halo 3 [looks even greater].

Anyway,games on the list to buy- Assassins Creed,Viva Pinata,the new GTA [in April] possibly Bully [already have it on ps2],Crackdown,Bioshock,Oblivion,Ninja Gaiden 2.......

Getting games for birthday off family,sister is taking am out and am going to get some original glazed donuts from the Krusty Krab [Krispy Kreme in Trafford Park,but am always get it mixed up with sponge bob as they sound the same might as well keep it that way]

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Now playing: UNKLE - Lonely Soul
via FoxyTunes

Overreacting?

2008-02-14T08:31:00.000-08:00

Yesterday,they put agency staff on with am again [when they know this is a major cause of problems and pain],and am managed to make it through the first one by hiding in room [except am cannot lock them out because they broke the handle off ],and without a meltdown,but, unknown to am,they another agency lady came on shift after her and was sent to am [especially when they know what happens,and have been told not to by two autism specialists,a behavioral specialist,one of the managers,sister and dad]-that was when it set am off,am ran out the home and to usual spot in the alleyways,am sat down and rocked for a while with kooshball hoping was not going to meltdown,but one of the neighbours let his dog out and his constant barking triggered it.

Cannot remember much of it,apart from finding self not being able to move [had been restrained by the regular staff team who had come out looking for am]they asked the man [who they know] if he could move his dog away and bring him into his house,so am could recover,when am fully came out of it,they brought am back to home,and am refused to go in,and dropped to floor rocking,-they eventually worked out from all the attempted dragging that am did not want to go back in cause of the agency inside,but another staff came out and said she had spoke to one of the main managers,and they said "just get rid of her in an ambulance and away from there-let the paramedics deal with her".
The staff also said, "who's going to go with her",other one said "just send the agency staff with her" WTF........and they say am very slow at learning,they obviously hadn't took any notice of what just happened then.

Am tried signing [they haven't been taught it,no surprise there],and they said "look,shes trying to communicate" and asked if am wanted to go in,to speak via laptop,so they both restraint walked am in [one person on each side,which am find comforting when held tight] and got am up- told them [after this very slow laptop managed to load everything] what had heard,that no way am going to hospital,and what had caused am to go out.

They then got it sorted that am not having agency,for today [which havent had] and the manager is going to fight to get am the regular staff rather than agency-it's all because am get funding a bit different to everyone else in house,am get the most support,so they had to make some of it up with direct payments which is not allowed to pay for social services care,it goes through agency only,they are going to try and change that.

The manager who told the staff to phone the ambulance-have known for years,and even though he didn't work in this or the last home,he often came to see am,and also took am out for drives to stop am having meltdowns when that 'aspie bitch from hell' was doing her attention seeking screaming.

He knows am have an extreme hate/phobia? of hospitals and ambulances-due to sensory,unfamiliarity ,and close attention-again,all the specialists,family etc have told them of this and it's been written down for years,so they know as soon as they even try that,it's going to put am into attack mode,so they were risking paramedics and staff as well by wanting that to happen.

What am do not understand is why the same manager [and the rest of them],can say trying to kill herself and trying to make others attack her by torturing them [and a lot worse] is "part of her aspergers"[the aspie bitch from hell,from previous home],but they want am put in the pysch. ward for a meltdown which is not a pyschiatric problem-and are known to partly involve seizures,as well as being set off by autism and the enemies of autism -the setoffs such as routine changing.

Am do end up with a lot of damage from meltdowns,but this was a mild meltdown compared to usual,am had been self injuring,but recovered quicker than usual [definition of mild to am]-so they are going to have to get some other excuse of getting rid of am from here,they are looking for every excuse,but social worker is still trying to find somewhere more specialist in autism,the reason manager wanted am to be taken to hospital is because they can refuse to have am back home,so then am have to be found a place from there-it just shows how little understanding this particular manager has of autism doesn't it? that is the sort of torture that would end up with am being chemically restrained and strapped down so hard can hardly breathe.

Today,am met new CP nurse,she is going to see am every week to try and help with coping,and with all sorts of other things,she's also going to try and get am melatonin prescribed via the doctor.

Am going bird watching tomorrow [birds of prey] with the resident bird expert staff ,and am hoping no problems come up,just one day to go right,with no meltdowns,no overload,no bad?
There is a sparrow hawk [the bird expert said it was] who lives in the garden here,first time have ever seen a bird of prey,it's massive,one of the staff has seen it flying off with a sparrow in its claws.

No pain,no gain

2008-02-05T17:49:00.000-08:00

Tuesday.......am was woken up to be told one of the other residents here is having a new door put on [drills,hammers etc],no warning,they know am need warning and have even been told this from parents,to the manager to autism specialists.
The men were already here,and am was in a state [not meltdown],ran straight out to usual 'sanctuary',a maze of back street alleys.

Two staff found am and said they would take am to Urmston to get some shopping,whilst the door was being put on.
So just as got across the road to the wall of the local junior school,a agonising screeching sound tore through head,it was a alarm,it set meltdown off immediately and am was KOd via what must have been head banging and/or punching,the staff restrained am on the floor whilst some community police officers who were passing by came over,and asked if they could help,they went and asked the person whos' alarm it was if they could turn it off,and went home to get cushions and pillows to put around am to stop any further damage.

When am came out of the meltdown,am overheard the staff saying how it is completely the wrong place for am,and need to be moved somewhere that can cope with am.
Hearing it from someone am really like has become typical,and used to it,have been called a burden to others since early childhood,then again,am sure sister would say the same thing about mum.

Am was brought back to home,but downstairs to recover in the lounge there,the manager came in and said she thinks am definitely having seizures during some meltdowns.
Am was left there for the rest of the day,until it started to get dark,the people who were fixing the other residents door hadnt even finished till then,unfortunately one of the residents downstairs came in the lounge,and kept banging and shouting,am couldn't run anywhere because the drill was going outside the main door.

Am ended up in another meltdown in the lounge and skull and brain got another smashing as it's badly bumped and bruised and am feel extremely sick and dizzy still,was restrained again,and finally got to go back upstairs after being like that all day.
Before am went up,am overheard staff downstairs say they can't do anything in the building when am about,it's not fair on anyone else-as if haven't overheard that for the past 23 years,yes,autism is the entire fault of the autistic and they exist only to cause other people problems-thats exactly what it always sounds like.

And wednesday........
they tried to put agency staff with am-who do not know,am need to have the same staff ,and have to be inducted with new staff on a 2-1 level,until get used to seeing them around,but the manager has not arranged this as she still thinks the previous agency lady am know for a long while is coming back.

Am locked self in room and tried to sleep until the regular staff came on for am,no chance of that,she started banging away at the door and shouting,am started cutting away at arm but the ring pull broke and then ended up in meltdown,the regular staff who had just come on kicked the door in and he,the staff team and the manager restrained am,they later said they had saved the laptop from a smashing and soaking[which had been on the bed at the time],am had just started drinking a can of redbull before meltdown,and when am came round from the MD,thought am had pissed in pants-quilt was soaking to,but no,just wasted a whole can of redbull [another one got wasted in one of yesterdays MDs to],there was redbull and water all over the floor [which is okay as it's the wooden stuff].

The manager has arranged for GP to come tomorrow to get all this stuff sorted out- the neurology visit,the ensure prescription [so no more complan],sleeping meds,and so on.
Think they want am to go on more meds for MDs,not sure what to think about that.

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Now playing: Above & Beyond - Trance Around The World #193 (Guy Ornadel Guest Mix)
via FoxyTunes

Social worker

2008-01-15T08:31:00.000-08:00

As from today,am have a new social worker [third social worker].
Previous social worker was/is the most experienced of,and the manager of the LD team,but she has got too many cases and am not getting stuff sorted out anymore by them so they decided to change to give am a better chance.
Am remember meeting the new social worker a long time ago,he was 'shadowing' the autism speech therapist who worked with am,he seems very nice and nothing at all like the first social worker.
He is going to arrange times for having 'getting used to' visits- so can get used to the change,and get to know him better.
Hopefully,will now be able to finally start going to victoria house now as well,as the reason have not gone yet is the other social worker hadn't sorted out the staff to accompany am.