The Residential Autist

PECS

2009-07-12T14:30:00.000-07:00

A delayed post but had posted about this on the usual forum...

Some time ago,am was taken to the NAS HQ to use specialist PECS software they have,am had a very limited supply of PECS and wanted more.
The staff entered all the words they know am would use [all the ones am tried entering were too naughty for the software and had no pictures available,but it's not like 'poo' and 'fart' are that bad] -PECS pictures would come up for each one.
One of the staff came up with the idea of joining another picture onto one which made a sort of naughty word.

They then laminated them on another day,and brought them to am.
Am started trying to cut self with them to see if they could cut flesh,and then had them taken back straight away where she then rounded all the edges so theyre a bit wussy,typical first thing think of doing was 'does this cut through flesh'.

She mentioned a bum bag being a good thing to get to carry them in,and had had no idea where to get one,neither do understand why it isnt called fanny pack here when people wear them over that,not their arse end.

Turned out that the great- sports direct sells them,and think had gone in there for something else but found a good fanny bag.
Here's some photos:

The fanny bag-there's a pocket on top,in middle,and at the bottom,and
have split all PECS into different pockets in order of need:

The top pocket,which am use for keeping the most needed PECS,
spare ear plugs and painkiller stash though don't have any in it at moment:

And these are own favourites,should be no surprise.
'Kittens' was used either because staff forgot 'cats' or software
didn't have 'cats' but it was close enough,'coffee shop' is
favourite as like to go there for mocha-
caramel frappachinos as often as possible,did
not know what 'up yours' meant but staff said it was like a
swear word so that became favourite, 'shut up' as it was another to
add to the naughty pile, and 'rat' because
they're great.

Horse riding

2009-07-12T12:51:00.000-07:00

Am officially back in the saddle,and back doing the greatest therapy of them all,and it's all thanks to thieving bastards on crimewatch UK.

Am had left RDA [riding for the disabled association] riding some years ago,due to being moved to another area,it was an RDA group within a mainstream riding centre/school/whatever they're called,and it was quite a high class place with one of it's owners [also the man who was lead around by] having worked with John Whitaker,and his sons a championship show jumper as well.

But one of the main staff there who sorted the RDA sessions and ponies/horses for it wasn't very nice and treated am and the others had gone with as non human,none of us refered to by names,am was 'the ginger one' [am white-not ginger,but have ginger hair],the fellow autie lady from own home was refered to as 'the black one' [having black skin and hair] and the rest who sometimes came along from the local day centre were equally dehumanised.
Luckily she didn't come out on the rides [hacks,not lessons].

Recently,whilst channel skipping in the morning,there was a crimewatch UK roadshow programme on the BBC which reports big crimes to try and catch the people who did them,and a bit of it was about a stables for disabled people having almost all it's specialist tack stolen one night,a stables called millers nook-here's what happened:
http://www.horseandhound.co.uk/news/397/278780.html
Am went to visit the place first and found out a bit more about it,it's a non mainstream charity status RDA stables and has a huge outdoor arena.

The day came to have a lesson there.
Am went with two support staff but they were not the usual staff for that day-as only want to go with the horse expert staff.
The staff and helpers there are great,and understanding even if they don't really know some of the problems.

Am was able to be with the pony was going to be riding whilst she was being groomed and tacked up-she's a skewbald pony called Jasmine.
Jasmine was tacked up with a special sensory saddle-it's a special fleece soft saddle for riding as close to bareback as can get,it also helps to better riding ability and does not use stirrups [these are the type that were stolen].

The arena had panels along the fences with letters as well as pictures on [used for knowing where to go] which am found helped so much as letters are a struggle to process but simple pictures are so much easier.

Am had a helper,and instructor,and as the lesson went on,was called a natural at it and was quite advanced,nice to know have got a skill am very good at,some RDA riders are so good they do mainstream olympics.

At the end of the lesson am gave Jasmine lots of pats and hugs for carrying am around,got off,went to Middlebrook and got a mocha-caramel frappachino from starbucks and went home.
Am had noticed a lot of improvements for that day-on the car ride to the stables am was having to wear earplugs and ear defenders on the motorway there because of the noise,but on the way back,it was like hearing had been calmed as well as self-and did not need to use them constantly.

Unfortunately for the staff,am was interacting with them more,and didn't get any tics till night time.
Am had a great time and got so much out of it,am really recommend everyone out there with a disability at any severity check out RDA groups or centres,some of them do cart/trap driving if are unable to ride for whatever reason.

Am getting a new hat this week as old one is falling apart [though not getting rid of it]-it's going to be a jockey skull and will be getting a silk for it,and some jodphur boots.
Am also thinking about fundraising in some form for Millers Nook.

May update

2009-05-17T14:34:00.000-07:00

Haven't blogged in ages.
If not guessed from title already,this is may,unrelated to post-Scuzz [tv channel] is showing Metallica:from the beginning...is good...well not all of it,but some of it.
anyway.....
Have not been back home [as in res. home,not family home] for a long time now,the decorators had been into decorate when am was at family home and they changed the colours of the entire inside building,so have been unable to get through the door way even.

People have thought am being everything from fussy to,controlling,to lazy over it,and have had nothing but mental V signs in head for them,most do not seem to understand how changing things mean nothing to them,but means a huge amount to KoR.

Dad is desperate to get am back to residential care,as he cannot cope again when NAS staff are not here,mum is drunk every day,and trying to steal from the money dad gets,as he has to leave it here for staff to pick up when am going out with them...just like old times.

Am fighting with him a lot [also like old times],he is extremely controlling and gets abusive when anything doesn't happen his way,and he goes and tells Rach [KoRs sister,not his] that am have attacked him,broke a door or had a meltdown etc...without saying what led to it,and then am get a load of crap off her when next see her or over MSN making am out to be an evil burden on him.

He's told her he's fed up of am being here,am feel exactly the same thing back....am ended up physically fighting him today after he set am off saying the very last things needed to hear when was in extreme pain from neighbours banging with hammers and using power tools next door.

Then had gone up stairs and started doing what had tried to keep away for some time now,broke open a razor and got some blade out,started cutting again-on left arm and hand,and because am do not feel pain and had not done it for a while,had gone a bit too deep because it was spilling down onto grey trousers.

Own social worker came last monday to have a meeting with dad about how far along the move to Fairfields was,it's all sorted now,apart from fairfield staff needing to get trained with am,and they wanted to do it whilst am at the other home,so the NAS support staff have been bringing am every day to try and get used to the building changes,but cannot even get near the door,even though am trying very hard.

There's also the problem of the amount of time it would take to actually get used to being there again [if possible],because by the time thats done would need to be getting used to another new building at fairfields again.

Social worker is trying to see if Fairfields will just allow visits instead-eg,they can shadow the NAS staff when am out with them,or am can go there,and can slowly get used to it as well.

Also,still waiting to get the motability car,it's now decided on a one point six vauxhall zafira exclusiv,there is no pale blue option though which isnt fair.

Grand Theft Auto,with less blood

2009-03-27T12:45:00.000-07:00

This blog writer has now become one of the many who owns a car [well in own case,give it some weeks as haven't ordered one yet] -am finally getting a car through Motability [a scheme where can order a free car if get high rate mobility component of Disability Living Allowance....actually not free,they use the mobility component towards it].

It's finally going to give some life back.

Motability have a big long long long... list of cars to choose from,from the crappiest things that sister would say look great- up to the jags ,the BMWs,the mercs,the alfa romeos,the jeeps and maybe even bentleys [have never checked for that one]-obviously they're for disabled people who have more standards than sister when it comes to cars [though that isn't hard to beat].

Am looking at getting the ford C-Max which is this one: http://www.ford.co.uk/Cars/C-MAX
though the Ford Focus is also an option,and the vauxhall zafira is on the list to,depending on whether the zafira has a big advance payment on it or not [that is where also have to put a one off payment towards it].
Have been to a ford dealer today with NAS staff,and got some brochures on both the ford cars,
and the motability guy told staff that the C-Max has an advance payment on it but not a big one,and the Focus is free.

The C-Max has got a lot of things can have added to it like this sound reduction thing,and a laptop/psp etc power connector thing in the back of the car so would have both those included as well if end up going for that car.

Am will not be driving it,as much as everyone would like it-because would end up driving into the local school,of course it isn't the children that care about-do not want to get the hopefully pale blue paint scratched or splattered with children-it's having open insurance so all the staff can drive it.

Sister doesn't like it as she knows will drive up to hers a lot,she said she is going to turn all the lights off to look like she's out.

Moar update....

2009-03-18T17:28:00.000-07:00

Am may have just found out how the meeting between trafford and the new autism organisation went yesterday [as in,if am definitely moving there/getting the funding for it].

One of the staff told am today she was at diabetic training [for David] with a few other staff,and the home manager had mentioned to her,'there are two service users who are going to be moving very shortly from upstairs',so have got an early announcement on the move before the manager has got in,cannot believe how great this is,trafford are finally getting off their arses and funding things,
they had refused to fund a placement with the national autistic society saying 'they cost too much',

well this home is a lot better than the ones the NAS have got anyway,only shit thing about it is it's in Partington-they don't just put their cars on bricks there,they put the houses on bricks to.
Luckily,it looks nothing like Partington where the home is,they've built it to look mega awesome and cut off from the residential areas.

Does anyone have ideas on getting a cat? as it will be kept on the farm?
Do not know what the farm is like yet-if and how many buildings its got for cover,or if kitty would need something building.
Would still like a pedigree,maine coon or norweigan forest.
Will update as soon as get visit of the place.

New home placement...nearly officially confirmed!!!

2009-03-16T16:47:00.000-07:00

It's took over a year,but am finally have a place almost officially confirmed-with the conditions that the council [trafford] sort the funding out,and fund sound proofing for bedroom-as no placement is going to be allowed without sound proofing.

Have mentioned who they are in previous blog post on them,but if anyone else lives in trafford and lives in the same/similar situation,pm am on wrongplanet if want name of the organisation.

There are going to be four young adult auties in total in the home,no one is in it right now as they are just getting the residents together,it has another big building next to it for the children/teens residential.
am being reserved for the downstairs bedroom,due to physical needs from s/overload induced paralysis in legs and staff risk assessments on am having meltdowns on stairs.
Two others are profoundly LFA [as in,severe MR as well as full time non verbal],and the other
is a fully verbal autie who tics [physical and verbal] am think they could mean echolalia as well-no idea what their other needs are as the managers were trying to think of what may affect am.

They've got a lot of land around the buildings,and a farm-with their own horse and pet chickens for residents [for therapy,skill building and companionship].They've even got their own sensory room.
Am not allowed a cat because of the possibility of other residents coming in being allergic,but they said am will be allowed to get one and keep it at the farm instead,a farm kitty-cant argue with that its better than none.

Am overheard in the meeting- will be allowed to keep the staff team have got from the NAS,wouldn't have accepted a no anyway,and the managers said they would be able to work on [sensory] desensitising am after getting settled there.
But...am ended up being restrained in front of the new managers on the floor after nearly smashing this laptop as well as anything else not pinned down,and flipping a sofa in the lounge then having a seizure on the floor when a stupid..fucking idiot driving a ring and ride bus decided to slowly reverse [instead of going forward] all the way down here-with their reversing sirens on full volume,and pull up under bedroom window,only to reverse their way back out of the street again,not exactly what managers should have seen till they at least had got to know am,luckily it is not the sort of stuff that would bias whether am get a place or not as thats' pretty much standard stuff [and mild] compared to others anyway.

Had then went for a drive to find the home tonight with NAS staff,it all looks awesome from the limited amount was able to see.
Once the funding is confirmed,they're going to start their transition process,allowing am to get used to the place,others and the staff-and for the staff to get to understand am-don't know how long have got left in this shit hole...please let it be under two months.....CAN'T WAIT to get away from the residents and some of the staff here.

Ignorance on forums

2009-03-15T17:06:00.000-07:00

Haven't wanted to cause more problems on wrong planet by posting about this further there,so here is a post to let off what would have wrote,anyone else from WP who is experiencing problems with other users-please join in.

There is a user on WP who has made it a campaign to include am on most posts she rants through.
It all started on a thread of a decent community respecting user-about the treatment and differences between aspies and auties [cant remember exact details],am had wrote a post giving own view on why auties get better treatment for similar problems-and have always fought for equal rights of all autistics on wp-so had wrote in usual,neutral way.

But this user decided to ignore the post that am wrote and pick out words she didn't like,and called am prejudiced/in hatred of/ignorant of etc against 'high iq AS',and that someone like am should not be going into the majority of topics in wrong planet,just stay the fuck out-in other words.

If she had cared to find out instead of picking and choosing what offended her,am come from a family of 'high iq aspies' including sister who acts as an advocate for am as well as a friend,have an autie teenage cousin in dublin,and have lived with high IQ aspies and auties in residential care-am see all things as the same/having the same worth and could not care less on what IQ or disability someone has,thats' up to those who are petty and silly enough to argue 'who is the highest',the best etc.

Every word she used in that post described exactly how she writes,and her behavior to others,and the reply am gave to her was asking why she was taking it out on am,and why didn't she ask am directly if she had a problem? had stayed out of that thread from then on out of respect for the user who started the thread as did not want to be the cause of their thread getting ruined.

Am very easy going so have not reported her for any of it,but may do so if she carries on,as am fed up of coming on the only true communicative sanctuary am have [besides this blog], and reading constant hidden insults about am to wrongly inform others,her major issue seems to be about the fact am pro choice [to do with the idea of the cure],because am believe choice should come first if there ever is one,she has got it in her head am want to cure aspergers when am have only ever said those who would want one should have that choice-but the focus is always on strongly impaired aspies and auties whos' quality of life are low-has/will not be/en improved by any amount of specialist help,disability aides, support etc,never included mildly affected aspies who have little to no impairment and are anti cure,but again-believing in choice,if there was enough funding would believe in choice for all levels if that person wanted it-their body and all that.

She also sees the experiences am give on WP as negative/depressing,am don't have self esteem,
and am only giving the younger users bad examples which they will end up like and so on.
It's nice for her if she is able to lead a NT-emulating,independant life as a 'hidden aspie' like she has said,but she has excluded and abused the many aspies on WP who are not at the same level as her,as well as others like am who are classed at the severe end of the spectrum,with high complex needs.

She's wrong on the self esteem thing as well-stocked up on plenty of it,am able to see any side whether it's bad or good without bias,if she read the blog or had met am-she'd see exactly why it isn't all sugar and spice and all things nice.

And also,not forgetting-isn't the idea of a forum for each user to give their view,not just pick and choose the views that agree with the elitist few [unless that is what the forum has been designed for,and wrong planet is definitely no playground only for the 'high iq' last time am checked].

Another one from her-apparently am need to get a life,damn straight about that!
Have got almost no quality of life at all,though don't need to quote the blog for answers why.

The night time meds induced moral to the story [that most on WP know] is-don't judge anyone elses experience by own experience.
-don't treat others like shit for having different needs,a different form of autism,or a different experience [which is likely given that everyone has a different experience].
-don't treat them like shit for having different ideas about autism related things to self when it isn't breaking any rules.
-don't treat them like worthless shit if they're younger users [won't mention user names here who do that],but just because someone is a lot older doesn't always mean they will have more experience of life than a teenager.
-treat others how would want to be treated.

New home found.....possibly

2009-03-11T16:06:00.000-07:00

Got news of this yesterday,a small..ish cheshire based residential home and respite organisation got in contact with staff to say they want to come and assess am,to see if am suitable for one of their residentials,they're coming on monday.
They take on autistics 'with high complex needs and challenging behavior',and are NAS and BILD approved,they also own a horse as a resident pet for the human residents,to provide therapy and companionship.

It's in a 'semi rural area',they've got their own land [quite a lot of it],no idea what part of cheshire it's in,would do anything [or most things] to get a place there,or if not there then another home of theirs,it would mean finally get out of traffords hellish learning disability residential services.

All depends on what the people are like who live in those homes,because am was told not long ago have to live on own with own staff team because of the problems am cause for others,but won't know anything further till monday.
Now off to check the organisation out on CSCI.

The search for a unvomitable ensure drink is over

2009-03-06T11:10:00.000-08:00

Having an extremely limited diet for sensory and routine reasons,and going for up to weeks without eating [due to changes],am prescribed special milkshakes from the dietician,called Ensures,they're food replacements and most commonly given to people who have got cancer or are very underweight,am neither of those.
Anyone who has ever tried a few different flavours of Ensure before,will say how disgusting they are,am often hear people say it has a chemical mediciney taste,but am find it has a slight taste of what its supposed to and the rest of it is a strong taste of nuts.

So J [new keyworker to take over from L who neglected to do this] has had some new flavours from the chemist ordered in-there's only one of each/coffee,vanilla and chocolate [which is the horrible one have always ordered before] to see which one want a boxfull ordered of,got them tonight,tried the coffee one and there was almost no taste of the vitamins and stuff thats in it-just the coffee,drank the lot very quick though had a few sips of redbull alongside just to even it out a bit.
Awesome stuff,have now actually found an ensure flavour that am able to drink without puking back up.

Most of the staff never get the name right,they ask if want to have an 'esure' now, which is the name of that stupid car insurance company with the shitty adverts.

A compliment from management....what she after?

2009-03-04T16:36:00.000-08:00

On monday night,the usual waking night staff am have wasn't able to come in,and the evening staff were busy trying to sort it out 'behind the scenes'.
They tried the other waking night am have but she was doing something else.
They realised am had had a rough day already and instead of contacting the agency to send someone new [which always results in major meltdowns and doing a runner,but it's what they usually do because the manager doesn't want to pay one of the home staff to do waking night] they decided to contact one of the home staff instead-and it turned out to be favourite staff from here/Jo.

Am still had a meltdown but it wasn't major,probably because it was Jo-someone am see most days,and have been with since living at KW where she worked also.
It was awesome having Jo as waking night,the agency waking nights both do so many things that would get them removed from their job as well as never being allowed to work with 'children or vulnerable adults' ever again,it was just like being back at KW [without that nasty bitch,Jane].

Am got Jo to do the most official-like IQ test on the internet,and when she eventually finished,she was told she had an IQ of seventy,eg,she's in the club [mental retardation],well not really as she has undiagnosed dyslexia so that made it harder for her,but haven't stopped messing with her,made her a certificate.
She knows am had an official IQ of seventy,and has gone around telling other staff,she's got the same IQ as a service user.
So..today,she tells the manager about the IQ test,saying she got the same score as am,and ignoring MR, the manager said,Jo will be smart if she scored same IQ Emma has.
Hows that for coming off a home-and service manager? more of that please.
Don't know if she's after something.

Got another staff to do the test tonight,lets just say the MR club is filling up-and not with service users.
Shows how pointless they are [not the staff,well some of them are...the IQ tests],they dont test for other intelligence,like ability with different objects [such as computers] or animals,or in Jos' case-people because she's the most caring person in the world.

A very feline victory

2009-02-25T14:01:00.000-08:00

One step closer to being a fully kitteh accessible home!

The cat hater and nasty staff who hates KoR has lost her cause,and it's all thanks to her deciding to piss off on holiday this week,so thanks L if ever read this.

Today,at a staff meeting,the manager of this home [also the service manager] and a few of the home staff were talking about why am not allowed a cat and how it's unfair excuses have been made by biased staff to stop from having one,when they did exactly the same thing in the last home was in as well.

One of them had been on autism training yesterday,and got backup from one of the trainers on how am see cats as friends rather than humans because am not able to connect to humans in the same way,they also said it's very theraputic.
So the manager has finally allowed GFB to be an official guest,his humans couldn't care less [they know he's here but he's infested with worms,and they've left him covered in tics before],

On a side note,have been told by manager,own social worker is coming with one of the LD nurses
on friday to investigate the treatment and neglect from L,and have been told it's looking likely am will not be moving into a home with other people anymore because of how am affect them,they're looking for a sound proofed detached bungalow of own in countryside with own full staff team,and they're fighting to keep am under learning disability services which am do not want because of the hell am go through with the staff-am think am have it difficult living here but then wonder about auties who are fully non verbal and very limited in communication,of the ones am live or have lived with,they are forced to put up with shitty staff because every behavior they do to show they don't like what's going on gets written down as 'they're challenging staff again'.
Just some thoughts...

The Makaton project

2009-01-27T18:26:00.000-08:00

First part [Part A] has now been made and is online:
http://uk.youtube.com/watch?v=Y_4Olfz4L7s
This video am made with staff features some of the basic Makaton signs,not many because the memory stick is so rubbish it won't hold much video,getting a proper digital camcorder as soon as can get manager to authorize/get the money [next week maybe if she's in],so won't be limited in memory space then.
Make sure to have volume on,as the night staff am have supplied the vocals for each word,there's no subtitles.

Other Mak/videos will be made soon.
Am have been teaching some staff who don't know any sign-Makaton,though am do not know the entire 'language',only ever bothered with the basics as it was mostly what needed.

Wanted-a speech to text program

2009-01-23T14:13:00.000-08:00

The first wanted post have ever made and it's keeping with tradition of the blog [autism].

Am wondering if anyone knows of a GUI based text to speech program in linux,one that has speed/volume settings,and would be good if it had different voices to.
The reason am asking is because have gone back to linux [dual boot,not deleted vista] though didn't have to get dads techy boss to do install it this time,did it self using WUBI.

the distro am using is Xubuntu [which uses Xfce if that makes any difference] have got espeak installed but that is not GUI/runs off CLI so even though its useable,it's not what am really after in a TTS program,need it to be less fiddly with a lot more options.

Am want something as close to JTalk as possible in linux?
Am have heard about the festival engine and some GUIs for it,but couldnt find festival on synaptic package manager and do not have the skills to install via any other way.

Also,are there any basic programs out there which allow people to make their own programs [a visual drag and paste type one rather than one involving numbers/code],as would really like to be able to make a linux TTS designed for NV/SI autists.

Thanks a lot.

Will sensory difficulties ever be taken seriously

2009-01-23T12:44:00.000-08:00

One support staff who am have known for years through the shawe road institution and present-has never got on well with am,or understood am-especially when it comes to the sensory difficulties,and more so especially when it comes to the hearing side.
Just now [the reason for this post] she came in and said, am lazy and have to start getting out more without a car to exercise,and that am not allowed to go in the car to the bank with the NAS staff anymore.

Can anyone who is reading this see the faults in:
Expecting an autie who is severely affected in sensory difficulties [so much,is actually housebound by the hearing side of it most days] to walk through one of the most crippling and sensory torturous parts of manchester-becoming extremely fatigued,visually impaired from the sensory scrambling and often falling to the floor in a meltdown-all from walking down one road?
Can someone please explain how wanting to avoid this agony is being lazy?

She said am need to go on public transport again to stop relieing on a car which had been one of the biggest tortures for am-meltdowned and self injured everytime am used to go on the bus/ring and ride,and family and support workers also got abuse for not 'disciplining their child'.

she assumes because am used to go on it when lived at the kenwood residential[but misses out the important part-was not able to cope with it,why should getting dragged off the bus in a frothing at the mouth state by support staff be treated like its ok to force?] am faking the need for a car,and am just being a lazy bastard.
the support staff who has said this is a right fat bastard who gets the car everywhere,right,am just being lazy-the concrete head banging and severe tonic clonic seizure in front of them are just a way of saying am a lazy bastard..yeah,whatever they say,idiots.

She like many staff dont seem to realise either,the hyperacusis am have got worse and is diagnosed at profound level,she and the rest of the ignorant ones say 'her hearing didnt used to be as bad as that' and say am faking hearing,even though a hearing test a few years ago showed hearing was even higher than what hospital software could test up to.
The NAS support staff who come here have given all the home staff info on hyperacusis because this is a comorbid of autism,which clearly states it can get worse coming into adult age which is the exact pattern that happened to am.....but of course,they're going to ignore the experts and believe their stupid shitty gossip.
They're fucking morons.

So how many other autists have had the same sort of problem-not having sensory problems taken seriously by ignorants? what is everyone elses stories on this?

If only everyone knew what the reality of living with the extreme opposite of deafness was like.
If only autism awareness courses for support staff and whoever did a lot more on the sensory side.
Am so fed up of constant sensory attacks with living in such an unsuitable residential and area-all because the service managers didn't understand the sensory side either and put am in the noisest home in the service.

A disability site that isn't so disability friendly

2009-01-20T15:33:00.000-08:00

There are many of these,designed for disabled people of all types,but never quite get there with accessibility and understanding of how their users are affected by their site.
A site may do everything possible to help the visually or physically impaired but don't go further enough into the spectrum of disability,in fact,some sites do not seem to know the meaning of the word disability-they think it's something that requires a wheel chair,hearing aid or cane and thats it-every disability covered! not likely.

So here's the point of this post,tonight,a certain organisations' major uk disability forum that am use [which has users with anything from terminal cancer to spina bifida to autism,epilepsy,schizophrenia etc on there] had a bit of a problem with one of it's community networkers,that is someone who is from the community who has to welcome new people,start topics etc,they're not the organisations' staff and don't get paid.
Anyway....she baited and attacked a certain user on there,in different threads,and when the user made a complaint to the organisations hosts-she got emails off her 'boss',she then posted them all publically.

Instead of temperarily banning her the mods have closed the whole forum,and buggered off for the night,they have not even stickied a thread to say what is happening,and why it's closed.
Am have been using that place for years,and visited every night as part of routine- taking turns on there then WP,there then WP and so on,visiting more so since they went full time.
So the usual happened-meltdowned,or to be exact-the wall got a beating with head and am ended up restrained on the bed.
The mods etc know there are many people like am on there as this has often been discussed-not just autie/aspie who for some reason or other need it kept to routine and predictible opening times and/or open at night [and are all actually paying for it],so to close it all down instead of just deleting the threads and banning the networker temperarily is..really stupid.
The networker has severe mental illness,and am think she may be having an episode,so that needs understanding,but there was no need to shut an entire community down,if they overreact like that to something small,what would they do if the place got hacked or spammed with tub girl?
So fuck it,not good.
Have been speaking to dad about it on MSN as he has just got off night shift,not a good night [or day] at all.

Agency staff

2009-01-18T15:43:00.000-08:00

For the past week or two weeks [can't remember which,short term memory challenged],am have been getting used to a new agency waking night staff [waking night is someone who has to stay awake at night],they're not here for everyone else so they have to wake the sleepin staff up if they want something.
She's from the cheapest possible agency called Primetime,doesn't take much to work out why the council always use them.
Am supposed to have council staff at night but there's a long term shortage of them,so they get the worst agency around to be waking night instead.

One of the two waking night staff left suddenly,with no warning causing a lot of meltdowns,a pile of smashed glass all over bedroom and several smashed draws.
She later said her mum had been looking after her baby for her in london,and her mum got ill meaning she couldn't look after the baby anymore-not sure how the baby got up to Manchester,can babies fit in the post box?
And the first night the new staff came,am had ran off,didn't realise had very little clothing on,ran through many twisting alley ways and got to usual place-a childs park,like to sit up on this covered climbing frame slide thing.

The police eventually caught up and took am home,was told had hypothermia-had not realised because do not feel the cold-ice had been forming on face and arms/feet.
The evening staffs had stayed on to look after downstairs unit,whilst the sleep in night staff stayed with am to warm body up slowly and change am.
She then left to go to sleep when night meds had kicked in and settled am down,and new night staff lady stayed.

Am still having problems with the new night staff lady,but am not running off from her which is good.
Am find with each new night staff accepting them gets worse because they always leave with no warning,or say they're going on holiday back to their country but don't come back.

Am also cannot understand most agency night staff as they're all from other countries and have strong accents,don't use the language am understand and don't recognise makaton-some of them have thought am was playing charades even though they are told am a makaton user in the communication passport they are required to read by managers? was asked 'is it a film?' when signing for drink!

Sometimes,am have thought fuck this,grabbed the keys off staff and got in the cubord to get a can of drink out [they lock away cans to stop am cutting through self with the metal off them],but then get into trouble off the manager for grabbing off staff.

Can't wait till move to NAS residential care,no more agency.

How not to race an RC

2009-01-16T16:46:00.000-08:00

Not good-today,had broke an awesome remote control truck have been using every day since christmas-an electric thunder tiger phoenix ST,am was outside with staff on the road-started it at full speed at one end,was stood in middle and didn't think to get out the way,it smacked straight into just below ankle-am felt leg bash to the side but hadn't realised what happened till one of the staff shouted 'the wheel has come off',it hadn't really it just looked like that,-that force on leg was the car-and that stupid leg was responsible for breaking the axle on the car,one of the pins has come out as well but dad said on msn tonight he's going to have a go at fixing it tomorrow.

And have actually been wanting to get a HPI baja [a very high end RC buggy] that goes super fast [though in reality,even though have been told can afford it,could never get one cause it's petrol driven=sensory killer] no way,will have it written off quicker than sister and her boyfriend write off their cars [dont suppose read TRA rach? avoid that line please,don't want the free taxi service to stop].

So here's the photo of the damage [with body off]:

UPDATE
Dad managed to fix the car at the weekend,he used a special type of extra extra extra strong glue [amorate? looked something like that],and used some pieces off a black coat hanger as a splint in case that mega glue falls apart.
He looked in the manual and said that the part that is broken can easily be replaced,so if it does fall apart again someone can go and get the part off model zone.

Getting away from this hell?

2009-01-16T15:21:00.000-08:00

Have just been told by the NAS that have been put on a new scheme they have just started, D had told am the managers had brought name up in the meeting of another service user who is needing to move to a new residential home,so am on the list!!! finally,a new placement,after that big fuck up with moving back to the shawe road institution [they decided to completely re design the place instead,and have been back since-they not even started on it].

the NAS will be running several new residential homes as part of this scheme,they're for autistics with high complex needs who are too C/N and challenging for their other residentials [end up clashing with others easy],they have got their own developers in on the scheme,who are willing to adapt all the homes to suit autist needs [not sure if they were also meaning the homes were going to be built or whether they are just going to adapt some],including things like padding the walls and sound proofing.

Here's the shitty part,this scheme will only be happening if the council agree to fund the homes,but the NAS has said that the council will make profit on them unlike with their own council residential homes so this should be a big help as the council care about money most of all.
theyve also got to convince the council to transfer am over to NAS care completely,which they have had trouble doing up to now because council don't want to pay the extra money.

Also,have now got a new autism specialist [pyschiatrist] called Dr Raja,part of the ss LD team-she has taken over from previous autism pysch am had who retired [John Birkett],she is going to be sorting those council bastards out to make sure they move am somewhere suitable in not too much time,and she's coming to sort out all the constant changes that goes on here,as well as the extreme sensory overload in this place,just one example-none of them care that by replacing the table and chairs in the lounge set off meltdowns and has meant have not been able to go in the lounge for over a week,it will take months before being used to this change-they knew about this but did it anyway-they didnt even say they were getting a new table-thats twice in a row,the other one got broke,in other words she's going to make this place autistic friendly!
She is also going to help am with lots of things,and also going to prescribe something for sleep-those who know am will know have been trying desperately to get sleep medicine off doctors for years,so this will be a big victory.

The Autistic kit

2009-01-14T17:18:00.000-08:00

First post in months,have been busy on catster and getting out in the car a lot with the NAS.

Here's many 'essentials' that may not have thought of trying before,all part of one autistic kit.
First off........

Ear defenders

These ones have had all the padding chewed off the headband,but can get them from places like B and Q- building shops,these help so much with sound when combined with ear plugs,but do not recommend constant or long term use of them,it causes tinitus.
There are childrens ones available online.

Ear plugs

These are laser lite earplugs,made of smooth foam,there are better ones out there ,as in ones that have silicone in the middle,but am use these under ear defenders which makes a huge a difference.
Both ear defenders and ear plugs take some getting used to to be able to wear themwithout thinking,and a lot seem to give up quickly on them but keep trying,may find get used to them,it took am two years to properly tolerate wearing ear plugs.

Helmet

Highly recommended for those who regulary head bang or punch/hit their head.
The one am have is a Nike-Bauer ice hockey helmet [no face cage though some may
find these helpful-for biting problems etc].
These can be bought in many places,but mum and dad had got am that one from Altrincham ice rinks' ice hockey/skating shop,am assume then that most rinks
should have a shop or one near them.
It provides better protection than padded helmets,and they cover all of the
head,the only downside to them is can't wear ear defenders with ice hockey helmets, whereas padded are customiseable.
There are other helmets available that offer some protection against head banging/hitting,such as rugby helmets,but the problem with those is they're split at the back-a weak spot in them.

Gloves

These are finger less wheel chair gloves,and are great for protecting against hand biting.
It is ok to wear full length gloves but a problem with them if relie on laptop a lot, is their tracking pads don't track movement through them so a comprimise is wearing
fingerless gloves.

TTS [Text To Speech] program on laptop

For those who need speech backup,or don't have any at all-TTS gives communication independance to those who are limited verbally.
The one am using there is JTalk which is completely free and completely customiseable.
The main problem with TTS on laptops or PCs is windows [the latest/vista] now has only has one voice to use,whereas with XP had had a choice.
And although it does understand most words am use,the speech engine doesn't say some words right.

For Autists who are completely verbal,but have a reading or writing difficulty such as dyslexia-try STT [speech to text] instead,of STTs-am only know of Dragon-which costs,
but there should be some free STT out there.

Medical ID

Am wear this because of 'absconding' regulary,so the police can find out am not a drunk, illegal drug user or pysch ward runaway,and explains why they think am ignoring them.
Recommended for both children and adults,it doesn't matter how low or high functioning an autist is,emergencies can be very different to normal for autists leading to wrongful
arrests or restraint,it's also good for paramedics to see,and other emergency people.

Favourite sensory and stim toys

These are own favourites,a koosh ball from the shop at knowsley safari park,a dog chewy toy,and a rat teddy from ikea.
Am chew them all,feel them and spin them,the rat teddy tail feels very close to a real rats tail.
Make sure have got enough sensory and stim toys,and cannot go wrong with fibre optics either! am not able to buy any anymore due to smashing them all,but the NAS often book the sensory room just for am and them at victoria house-another option am recommend,if are able to access them [sensory rooms].

The meltdown/incident rucksack

This is kept in bedroom and is what staff will take out with them if they remember, everytime they take am out.
It's a rucksack full of emergency things,there's a big foldable warning triangle they bought from a car shop in case am have a meltdown or seizure on the road,there are some squashed in pillows to help against head banging or kicking out.....a meltdown/incident rucksack could be tailored to anyones needs.

Xbox360

When they're not RRODing,they play great games,great for autists because they are calming,and have games for all abilities and ages,the ultimate stim toy.
The xbox in the photo is a halo3 painted limited edition 360, nearly a year old and not one crash.

Doctor visit

2008-09-23T14:45:00.000-07:00

The staff took am to the doctor yesterday to find out about getting medication for bonfire season [it used to be bonfire night,but bastards set off fireworks from august till about february at any time of the day/night] ,and other stuff.
The staff there give a spare private room to stay in whilst waiting for appointment.

Neil [one of the home staff team] was also speaking to the doctor about every single diagnosis am have [including health ones like migraine and TN]-needing it written down officially by the doctor to put into the files at home,the doctor didn't write the letter,but was speaking into this little black thing,he started with 'severe autism',he then got onto the subject of IQ score with Neil-[seventy four], he went through the rest-apart from severe tonic clonic epilepsy because Dr Rog had not sent him a letter with the final results yet to say what the diagnosis was,-Neil is waiting for the letter so he can get the other one,but it also means having to wait for new medication,because the doctor won't prescribe it until he's seen the letter.

As for the medication for bonfire season,he is going to prescribe vallium for two weeks around bonfire night,he said any longer and its too addictive,he also said to try a herbal drug called Kalms but am not allowed to have medication that hasnt been prescribed by a doctor,staff have to have them listed on MAR sheets,and the doctor said they don't prescribe herbal stuff.
Don't want to do yet another bacardi breezer plus co codomol combo mix again this year.

Change? the vermin to autism

2008-09-21T18:30:00.000-07:00

Over the past week has been one big meltdown and seizure festival.
Am found out one of the waking night staff am have had suddenly left and gone back to her own country-with no warning because her working pass had run out-and they never told am till she was due on-that change was bad enough-to find her replaced with staff am did not know....?
Am ran off-or as the staff call it 'absconded' and hid behind a transit van on some dark road-sat down speed rocking,am had no idea had not put the bottle of bacardi breezer [the small one] down -had just started drinking it before being told what had happened,is supposed to be illegal or so had thought.

Someone came over to am from their house and asked if am was ok,which home am was from,name... he phoned police and they came out-am had no idea what was going on until a extreme bright light was shon into eyes-and the police then set about trying to persuade am to go with them,they didnt care that was holding opened alcohol.
am went with them as the night time meds had kicked in,and couldn't be bothered with anything,so they drove am home.

One of the managers was there and he held onto am to walk am upstairs,he said it's ok he understands,am not in trouble etc.
He then explained what had happened with the staff,and to try and give the new lady a go-am found out she had been day staff with am before but because of the change at the time [had also been another quick change] and also being an agency staff [they're not allowed to work with am apart from as waking night staff,but this home tries to get away with anything],am had got in state,attacked her and self over it so she wasn't there for long.

Last sunday,am had also ran away from staff again,and was brought back by police.
And last friday,am find out-not even the smallest bit of warning [not that it would have helped but still] that the manager had not put a regular staff on-well no,will rephrase that-she had not put a regular staff on that am new-every one of them was new,am had never even interacted with them before-and so it begins......

Unfortunately,the NAS staff am have on a friday-who said she was just about to finish at the time-got a lot of it.

Am got into usual state,started smashing up room,everything that wasnt screwed down was throwable,everytime staff tried to come in,am hit back with stuff.
Am locked the bedroom door [they have a unlockable from the outside lock on the door because of what am like with them-though am had snapped the flat blunt knife they used to unlock it to try and get something to cut self with after sensory seeking a while ago] and trashed the draws in the desk,and squashed under it-so was up against the wall,am started head banging on the wall-out of trying to communicate rather than meltdown,by the time the staff and managers managed to finally get in,and restrained am-the wall had been headbanging on was almost completely splattered in blood,haven't seen as much blood before,is not something am bothered by,neither does the head banging hurt though do get post headbanging vibrating migraines in head along with tinitus-the cocodomol helps with that.

The Manager brought am to mums that evening because of the staffing problems,so got to theirs one day early,dad had locked the front room so wasn't able to turn the router on till he got back at night,couldn't be bothered in the end.

Throughout this whole 'festival',every day had been suffering from the usual multiple severe meltdowns-partly because of the constant banging and shouting caused by Jeanne-who bangs all of her doors in her bedroom from the moment she wakes up till the moment she goes to bed [and then gets up again to destroy the only bit of recovery time am have in a day] and daily tonic clonic seizures as a result-Jeanne should be in a nursing home because she has Alzheimers-she is closer to the advanced end of it and her needs are unsuitable in a home for LD,but they wont move her from here because she's been here for years-this is the same excuse they gave for not moving Jane from the previous home,despite the hell she put am,and the other residents through-yet they are quick to move am around when they know it's the last thing they should do,they are complete shit.

FE College

2008-09-21T14:56:00.000-07:00

This is something that has got am thinking again,because am failed it the last time around,and have had 'regressions' since the ASDAN life skills course a few years ago,which has completely destroyed everything am learned.
Am thinking of going to a special college,am cannot do the disability courses [courses for people with disabilities] at North trafford college because they cannot cope with the needs am have,and South Trafford-have done their disability courses before-they have less teenagers in ST than NT so there is not the shouty surroundings like with NT,but am not allowed to repeat any courses even though it is like have never done them-they have got rid of the courses am could have done because of losing the funding.

Have been looking at Bridge college and David Lewis college amongst others-as am meet the disabilities criteria,but not sure about age limits on them yet,am going to show Dawn this tomorrow,but won't be doing anything until have been able to move,settle into the new home and have got the motability car.
They usually only give funding for a special college place if local colleges are unsuitable for whatever reason, so given that have tried the local ones-with no success,hope would get it,it is difficult getting funding for anything as it is.

Neuro visit today

2008-08-29T15:01:00.000-07:00

A while back [it was either in march,may or april],am had to stay in hospital for a two night EEG test stay,and spoke on here later on,when staff got the results letter he sent to the GP,which stated it had showed part of the brain [right mid temporal] as abnormal during some meltdowns.

Today was the follow up appointment with Dr Rog,the best neuro they've got at hope hospital.
Am went with Dawn [from NAS],Neil [other support worker] and Anna [disability nurse].
When am got to the neuro part [that hospital is very very big on many different floors,and like a maze],it was overload from the people noise-a nurse said am and the staff could go in one of the doctors offices whilst waiting for the doctor,am thought that was great they offered that,though when am had to be an inpatient there am got nothing but nice treatment there to.

Dr Rog said that am definitely having full seizures during meltdowns-that was what the abnormality is-but not in all of them.
He said some of them are not epilepsy based/seizures,and classed those ones under [behavioral] meltdowns, though understands am do not have any control and often no awareness in them.

He also said migraines could be making the sensory problems worse,as am get a lot of them from meltdowns and headbanging,but staff gave him the idea that the migraines were random,rather than mostly happening after the meltdowns,head banging etc.
So he's adding Amytriptilyne? [not sure if spelt that right] onto the drugs pile,and he has got the staff some forms to fill in which type of meltdown it was,if it was a seizure,if am rocking 'normally' etc.

Am found out during the appointment thingy from staff who had all the daily reports and ABCs,am have had ten meltdowns this week [from tuesday to friday,as came back from parents on tuesday] but they're not sure why.............am know why,the noise has increased around living in this home -with three neighbours next to the home all deciding to knock down part of their houses and redo them-angle grinders,saws,lots of other different tools-from morning till night,weeks on end,the lady down stairs banging her draws and wardrobe-from morning till night,the CPer downstairs-playing his music on full volume/full bass,Marie up here shouting and banging every day again,how anyone could miss those easy setoffs,even deaf people?

Am also going to be getting a few more 'goodies' off the OT thanks to him,which will help life a lot.

Am glad they have finally made the epilepsy official,as am have been told-on off for years,it is epilepsy,it isn't epilepsy,it is epilepsy.....it was only because am had the long stay in hospital am managed to get diagnosed,as those short EEG tests are shit-they only work if happen to have a meltdown then,and am definitely not going to be having one whilst sat on a chair,in a nice,very quiet slightly darkened room.

Autist guides-DLA [A UK benefit]

2008-08-24T10:21:00.000-07:00

This guide is just a basic understanding of DLA,the technical stuff is here:
Click here

DLA [Disability Living Allowance] is the disability benefit designed to pay for all the things that disability needs,it is made up of different parts/component.

They are supposed to look at the impairments,before the labels-which also means those who are not diagnosed with a disability can get DLA as long as the problems have been noted by doctors.
This also means that just because some is diagnosed with autism/as/pddnos,it doesn't give them automatic right to DLA,as someone may have an ASD but not be impaired enough to be classed as disabled and get DLA.

There is the care component-which has Low/Middle/High rates,and there is the mobility component which has only low/high.

Under care,high rate is given to those with the most severe/life affecting impairments which requires full night and day care,middle rate is given to those who do not need night and day care,and low rate is for those who have less impairment still.

The mobility component does not mean only those who have problems with walking physically,
but for those who might have problems getting out and about for any reason related to their impairments.

Low rate mobility covers from mild to severe impairment because there is no middle rate.
High rate mobility covers profound impairment,and is very very difficult to get on even though it's supposed to cover non physical problems,they're very biased if are not a wheel chair user.
If think needs are profound,and want to try for HRM,get as much backup from specialists,
paramedic reports [if have any that are related to the impairments]the NAS-if a service user of them,social services-if a service user of them,support staff,doctors etc-as many letters can get as possible.

It took staff three refusals and a huge amount of backup to get am on HRM-the NAS support staff and bosses had added to it,they said they do not understand Autism,and unless a wheel chair user,they make it very difficult to get it even if own needs are profound.

Autists who have severe enough impairment, may want to look at getting:
*Motability
-A service for those with high rate mobility,they provide a car [chosen by the user] and insurance [can be open insurance for support staff to be the drivers,or whoever are driven by]-the user pays only partly for it using some or all of their HRM component,depending on how good the car was.
They will change it for a new car every three years.

*Blue Badge parking permit
Quite a lot of Autist difficulties and issues can make a blue badge parking permit a life saver,or at the very least-safe from injury,definitely worth having if need it.
Possible to get without high rate mobility.

Autist guides-different support available for UK

2008-08-24T09:38:00.000-07:00

Am writing a few basic guides,designed to be autism/as/pddnos friendly.
This guide is about the support services am know of [and am a service user of-apart from creative support].

A common thing on ASD forums written by UK users is 'theres no support for autistics' or those who automatically tell undiagnosed adults not to bother getting diagnosed because there's no help at the end.

This is not true,do not believe it,there is a lot of help out there,but it isn't automatically given,a care assessment is needed first.

First,am recommend getting a social worker,they give access to so many things and fight to get the things that need,some services will not help if do not have a social worker because of funding needed.

Aspies or Autists who do not have what the SS call 'personal care needs' may struggle with this,in the learning disability team-most councils have strict IQ and functioning related criteria.
Get the council contacted and ask for a community care assessment,they use this to judge whether are in enough need for help or not.

Autists who are refused a social worker within the learning disabilities team can try the mental health team if they have a mental health condition as well as their ASD.
The assessment must be done by someone who understands the main disability/ies that have got.

Within the learning disabilities team,if are found to need them,they will give self a speech therapist,pysch.,occupational therapist,behavioral specialist,CPN etc.
Am find them much more understanding under the LD team rather than through the way everyone else gets them.

One main organisation that helps Autists on all functioning levels in the UK is The National Autistic Society.
They have many different forms of support,including befriending,outreach support-full support in own home or residential care depending on care assessment,NAS residential homes,NAS day centres,NAS social clubs,NAS assessment centres and schools,their own job service,advocacy etc.
There is a lot of support offered,but a lot of it requires funding,if are unable to get help from social services and want to use an NAS service that needs funding,speak to them about it as they may offer ways around it or get the funding on behalf of self.

Autists can also get support from Autism Initiatives and Mencap.
Mencap have a lot of different types of support like NAS-but they are not autism specialised,they have day centres with great adult swings that are impossible to fall off/other garden stuff, and for those that like loud music-things like discos.
Autism Initiatives is the same sort of organisation- specialised for Autists but,it's newer,and is limited to certain parts of the country for most of their types of support.

An organisation who have group homes and outreach support,am can think of that helps Autists would be Creative Support.
They are more into mental illness,than developmental disabilities,but sister used to work for them in their MH projects and said they have quite a few homes just for people with learning difficulties and/or ASDs.
Those without a social worker can apply for a place,but the company gets involved with them on behalf of the client.
This is something some Autists who haven't been able to get a social worker may want to try.