the autism show

today,am very greatful to a certain bolton lady from creative support.
despite having it saved on the browser toolbar in plain obvious writing,had forgotten all about the manchester autism show; http://www.autismshow.co.uk/ coming up and this morning we got a call from that bolton madam to say she was at the show and had got us staff passes for it-awesome.

stopped off at starbucks first to grab the usual frappachino [whoever made it sucks at making them] and then went to the show.
we got the passes,and went in,it was amazing,went to artismUKs stand first and they had an artist painting in real time whilst a lot of artworks of autistic people were up on the wall-was very surprised that not one person had painted a cat,although a lady had done some awesome sketches of her rabbits,come on, whats going on? no cats in an autistic gallery? thats just wrong.

got loads of catelogues off all the stands that was very interested in,and am going to apply for funding for some things that will really help life,such as a safe space.

a very nice lady from liverpool was there with her daughter and she saw that was wearing a heavy weighted lap blanket [was sat in the wheelchair],she wants one for her daughter and has just gotten funding to buy one but doesnt know if itll benefit her-let her try it out and tried to express what it felt like when using them as they have no access to try them out but was unable to apart from signing and one word 'relax',pity she isnt reading the blog as woud love to tell her of how much benefit they have been to life and other people all over the spectrum.

no sports groups were there which am surprised about; given how so many autistics struggle with exercising or eating obsession,woud have been good to see different sports getting represented there to show autistics whats available and to show parents we arent incapable of how adaptable sports can be,school taught a lot of autistic adults to hate sports because they werent competitive or great at it,its about time the attitude towards autistics in sports was changed.

the best stand there,in own view was the autistic rights movement,although they didnt have any easy read/symbols backed up papers to read,was glad to find out we finaly have an ASAN type group that is sticking up for our rights and had immediately registered to be a member there.
support staff read out their beliefs and goals,and straight away had related to what they were saying,cant wait to be an active member and itd be good to know what we coud do in the community to help.

there were various speakers there doing talks,but the one had wanted to see;prof simon baron cohen was on yesterday,and the autism show website said his speech was based on males with autism; jesus will people stop pushing this outdated stereotype and remember we [female] exist to?

finaly,came across a old staff [outreach manager] of mine there from the national autistic society,felt awesome to catch up with her and she is bringing the old crew with her to visit and see the rabbits.

then we left,got back,cleaned the rabbits out-and was to knackered and overloaded to go back to the show to catch john 'my sons not rainman' williams speech.


cant wait for next years autism show!

here are some pictures;

 autism rights movement badge

 freebies; national autistic society bracelet, creative supports autism awareness bracelet and two bracelets from prestons space centre sensory/soft play facility for disabled adults [been meaning to go there for years and now theyre owned by the company am supported by].

 staff pass.

a see through tube that has glitter in it and changes colour a bit like fibre optics when tipped up or down,love this-one of the best things have ever bought,the lady who owns the company ended up taking a photo of self playing with it for the stores website,cant remember the stores name yet though, will need to sift through the catelogues.

realising a painful past through film

last night had watched the autism film; the black balloon; http://www.imdb.com/title/tt0865297/ for the first time and it was very painful and difficult to watch from the start.
the character in it with autism;'charlie' is pretending to be a severely autistic teenager,was just like him as a child and adult;except was not understood and treated kindly by mum or dad until adulthood because of early wrong diagnosis [the doctors blamed mum and said because there were no signs of solid brain damage it wasnt severe autism nor any other organic condition] and their strict catholic religeon which made them feel the autism was posession by the devil for mum or dad sinning,or something like that.

had had every behavior that 'charlie' shows in the film,and still do;apart from smearing which was one of the behaviors that the intelectual disability hospital managed to wean self off of doing regulary through four months of an extreme/negative form of ABA.

'charlie' is hated by his brother,he is absolutely resented by him,even to the point his brother smashes something supposed to be loved by him [his SNES console],his brother woud try to hide the fact he is 'charlies' brother whenever anyone from his school saw them together,he truly was ashamed of his autistic brother.
this is what really pains self,as it is exactly the same experience of mine growing up with a sister who did exactly the same things as the brother, was resented by her because she felt she coud never bring her friends around into our house,she was so ashamed of her sister she woud denie she had one and woud rip and break things of mine to get back at autistic behaviors.

of course she eventualy started trying to understand when she studied degree level pyschology and there was a unit purely based on classic autism,and over the years we became like friends-like the boys in the film,but it is still very painful to think the existance of mine was resented for so long,including infant and junior school where was beaten by teachers and the head teacher every day for behaviors and difficulties that had no control over,it was a highly confusing and distressing world to be in own world and continuously brought out of it with physical abuse and rough restraint slammed onto tables or into the walls by the teachers,and to be dragged home by the wrist and get even worse treatment off dad.

had really related to the film,and feel its the best film representation of autism have ever seen; at least of the severe spectrum anyway but cant help feeling have lost childhood,not to autism but to the people who shoud have cared for self.

accessing a hospital with autism & intelectual disability

was in hospital two days ago to have two teeth out and fillings done,as someone who has severe challenging behaviors from autism & ID [have mentioned this many times on the blog and elsewhere but ID is diagnosed as LD in the UK and what the US calls LD is what the UK calls learning difficulties,confusing eh?]  am given all dental treatment under general anaesthetic.

have been stressed about this for months but especialy recently as have got big physical medical issues at the moment including the highly painful and not pain controled lumbar spinal injury, any dental work triggers the trigeminal neuralgia which is a severe facial nerve condition that is also known as the suicide disease because of how painful it is so have got a bloody big right to be worried.


the trafford ID team and the special needs dentist of mine had been preparing this for a while, regulary visiting to explain with symbols and easy read information,discussing what will happen and the path we will take into the hospital and was put first on the operation list because of the level of behaviors that result from waiting.

the day finaly came and we finaly drove to the hospital,but the the driver of the two support staff hadnt a clue how to get into the back entrance of the hospital so we ended up the wrong way down a one way street and some old woman in a car waving her fists at the staff.

was given a private side room,and allowed to wear own clothes instead of the hospital clothing because of sensory and change issues.
the anaesthetist came in for a visit to say hi-she is a specialist in anaesthetising people with ID,and it turned out already knew her from past visits in the years gone by.
then one certain CSW madam from the trafford ID team came in to support as well,and was really greatful she was there to help calm and stop self from kicking off as was getting very bad with all the waiting,so yeah-thanks L,am really greatful for rushing to get to the hospital.

eventualy we went down and they kept the environment as calm as possible and the nurses and everyone was really nice,was given the canula and IV fluids hooked up,then the general anaesthetic to-can remember ending up fighting and being partly pinned down to stop from pulling at arm when the GA went in because it felt like a shock up arm,then woke up in recovery with that familiar disgusting taste in mouth,the madam;L was there.

it was extremely painful and was given sixty mg of codeine,am greatful they understood,am fed up of people not taking any pain of mine seriously enough because am not able to communicate pain or physicaly show pain.

was then allowed to take the rest of the morning medication;had been made to take most medications of mine at six am that day,but now was finaly able to take the naproxen which also helped with the pain.

had quickly recovered and was desperate to get out of there due to anxiety,coudnt wait for the dentist to finish the next patient so was allowed to be discharged,they said will want to go to bed when get home but just spent the day doing gardening on a raised flower box and watching dad put the rabbit run and connector pipe together before collapsing on the sofa in front of series four of breaking bad.

the day surgery team rule, pity all the hospital staff cant be like that, which is why canot wait to help train on severe autism and ID them soon.

heres some photos of just waking up in recovery,and one taken just as we got home;

reaching a major goal in life

one thing have been plagued by entire life is the extreme sensory issues have got with water.
in the past,had been physicaly forced into baths with shorts on and held in there and shouted to stay in-was in extreme pain from the water.

however,as the years have past,have developed tolerance for water in the lower limb areas as these have the least nerve endings.
have always wanted to go to waterparks/swimming baths and have been held back; not just because of the water issues but also the hearing issues as swimming baths have loud echoing.

greenways intelectual disability hospital had helped self get used to water on limbs using the foot spa and it gave a real taste for water.
so a plan had been set in motion....
upon being discharged from greenways had gone along to the IIIC disability expo in manchester and the disability services lady representing blackpools 'sandcastle' waterpark said the use of a wet suit woud be allowed under the circumstances of mine,yay.

last week,the plan became reality,had gone along to decathalon and bought a 'shortie' wet suit, had also found out theres a swimming pool that can be privately hired in manchester for twelve pound per person for an hour and have booked it,its a good intro into the world of swimming as an adult whose never swum; with severe autism.
have also got a body board to.

have been getting used to being in the water by going in the bath with the wet suit on-

really cant wait to go eventualy go to sandcastle waterpark.

breaking down 'barriers'

thanks to a certain individual at the trafford learning disability team [and a lot more of the team and our home staff besides her]; had actualy overcome a barrier that is no less than thirteen years old.

today,had actualy gone to the trafford centre,in manchester,not just gone to it-but gone in it shock horror.
and not just gone in there, but sat and had a coffee.
it helped that had had a diazepam just before we went and have still not recovered hearing properly from the recent bad head injury which blocked a lot of the noise out but jesus christ had actualy got over a thirteen year old barrier!!!
am also thankful to the south paw deep pressure vest am wearing,when am in the wheelchair its used as both a deep pressure vest and a harness at the moment as we are trying to get funding sorted out for the crelling harness first.

the last time had gone in there,had only just got in the door way,was wearing earplugs,ear defenders and a hood over the top, was linking arms with sister and dad,sisters husband/bro in law was there and mum to,it was a difficult and painful challenge but still forced self.

all of a sudden the red coat security guys pounced and came between self/em and family; had began to self injury [ie,head bang,bite and hit self],family had said am disabled and thats the reason why am wearing the hood over the ear defenders otherwise woud not be able to come in,the red coats said to us am not allowed in with hood up because everyone has to have their face seen by the security cameras and if continue to leave it up will be escorted off the premises,but during this power crazy rant of theirs;a group of muslim women walked right past us in their cultural clothing-the type that covers from head to toe and has a little slit for the eyes,the red coats didnt give a damn at all-despite telling us the security camera HAS to see every persons face,so why were they ok and not someone with severe complex disabilities?  they tried to grab hold of em to escort out the door in between self and family but the less said about the end result of that;the better.

unfortunately had not understood what disability discrimination was at the time so did not know what they did was exactly so so wrong,but had felt very hatred of them and never wanted to go again, so it wasnt just the fact that the progressing hyperacusis made it inaccessible but also the disablist treatment from the trafford centre as well.

thirteen odd [probably less than that,but it was one persons guess] years on had felt the same loathing for the staff, if they had said a word about the padded helmet was wearing it woudnt have just been a fuss was kicking!

here are some photos for anyone interested,am sticking them up as a visual reminder self;as is the purpose of any photos on here especialy-

was laughing and pointing at the girl to the awesome activities support worker who is stood next to self in photo as thought the girl was going to fall in.

                  having a stimmy moment,feeling awesome for actualy getting in the trafford centre.

being autistic and a pica eater is a double challenge,am using a wooden coffee stirer from neros coffee shop for both sensory seeking and pica reasons,was unaware was being photographed here as was busy getting down to it,after the shot was taken it was grabbed out of mouth before coud swallow. :P

addicted to a ipad sensory app

borrowed a fellow residents ipad the other night,he has the most basic one as its only used for proloquo2go.
staff put on some sensory and AAC apps-all free!!!  and these are..... well theyre just amazing.

was sat playing with one from afternoon/eve till night time,it is serious sensory seeking stuff and woud recommend it to anyone,still cant work out what its called because a google search for the name on the ipad seems to come up with a load of other shit.

anyway,thanks to the power of this laptop webcam and guvcview,had filmed the app in use;as close up as possible,it looks far,far awesome on screen than in this video and woud recommend everyone autistic or not give it a go because several support staff were addicted to it this evening and theyre as non autistic as people can get.
*click here to display video*

 

now,am in need of a bit of help.

does anyone reading this know a bit about these touch screen tablets?

have been desperate for one since proloquo first went into development but am even more so desperate for one now,and have been shown that android has its fair share of AAC and sensory apps to,so am thinking of getting an android cheapy tablet.

one staff however,has been really negative of these android ones; he says unless are able to get the likes of samsungs nexus then its possible will end up getting one with a shit screen.

am not sure what to think...being a newbie to this technology,he is an apple fanboy and has more money than sense [hell,he is a glory hunter and changes his football team when theyre in the dirt quicker than his underpants which says a lot], so fellow autist and non autists.... please help, are the cheaper android tablets perfectly useable?

am liking the nabi-
http://www.ebuyer.com/414190-nabi-2-tablet-pc-nabi2-nv7a-ukhttp://www.ebuyer.com/414190-nabi-2-tablet-pc-nabi2-nv7a-uk
its designed for youngsters and has a thick rubber casing and can take a real battering off toddlers so that comes in handy, but we found a even cheaper one-
http://www.ebuyer.com/407319-sumvision-cyclone-voyager-tablet-pc-cycvoy7
this is a unknown brand one,the specs kickass and the reviews are very positive,coud get one of these and a good protective case maybe.

what does everyone think?


n/b. havent got the money yet,but this is being planned..other people just dont know that yet.

autism taboos: smearing

smearing is a habit many of us on the severe or profound spectrums of autism have done or still do but very few people understand or want to tolerate it.

many of us have been punished for smearing which in some peoples cases leads to increase in smearing because they value all attention-negative and positive as the same,for some of us it leads to confusion and hurt because we do not understand why it is wrong.

some people smear purely because it is a way to direct peoples attention away from other things directly onto them,whereas other people smear because they do not understand how to express what is in them;they do not understand how they feel in a way that can be translated to themselves and others-am one of them.

am not a smearer of shit however,there was a few times had done it when young but am very intolerant of the smell of shit; have always felt throw up come up when around the smell of it.
the things have always smeared on walls and self are snot/spit and blood.

in own case it is a desperate form of communication;both for self and to the outside of self,and also a sensory seeking issue,though people always assume am smearing spit/cough up when its because am not able to understand what to do with it regardless how often people have a go.
non autistic people take their ability to understand what is going on inside them,their ability to translate their thinking [mine is purely image based so takes a lot of time and processing effort to translate into language] and communication for granted.

the incontinence nurse of mine has helped other autistics with smearing before by managing to replace body fluids with moisturising cream but for some of us that woud be a impossible concept-they are not the same thing so do not work in place of.

one of the worst stereotypes have seen of smearers is that we are dirty, in particular shit [formal-faeces] smearers,every single smearer have ever and still know are cleaner than neurotypical people,they take at least one bath a day; some people more than one bath and in own case am constantly wiping hands with baby wipes.

a rant at the up and coming DSM

something thats been bothering for a while....the arguments in the autistic community against the autism changes in the new DSM manual.

have read reports from various so called experts saying that people with aspergers do not want to be lumped in with those of us who have classic autism.
lumped in....ugh.
firstly what makes them assume those of us who have classic autism want to be 'lumped in' with anyone? what makes them assume we are a bunch incapable of giving our views?

why is it,all these years on,people are still only seeing the spectrum in stereotypes?
sorry to use the terms but they assume those of us on the lower functioning side are totaly incapable; some people think we cannot wipe our own arse,we cant speak at all and we are all fucking clones.
they assume people on the higher functioning side are all able to be independant,all minimaly disabled in their life if at all.

people,especialy people who do not directly experience autism spectrum need to keep quiet and stop saying what we want,and stop trying to creat divisions between people on the spectrum.
am fed up of being unable to fit in online in the autistic community because of these bloody divisions which give people who do not experience more severe autism the completely wrong idea about us,and how we think,and how we live and want things.
and am also bloody fed up with the negative language that is always associated with us when other groups are compared to us,eg; lumped in.

the new DSM criteria isnt saying we are all the same,it isnt saying we are clones, aspies can still refer to themselves as that if they want; it isnt a official diagnosis so no one can take a slang word away.
am hopeful  for the long term that this may make the spectrum more inclusive instead of divisive,the seperate autism labels have long caused discrimination, prejudice,disablism  and bullying.
come march,that will be a step towards removing all of this bullshit,we need to be supporting one another not making hierarchies where some individuals think theyre better than others just because they have a different autism label.

world autism awareness day

the self and the SALT [speech and language therapist-she is in las vegas on holiday right now probably playing strip poker;paid far to much].....well em and the SALT have decided to put together something big for the organisation to host a world autism awareness day party sort of thing.

come on guys,not remember the date as well? world autism awareness day is 2nd April,as copied from google.


as the madam has selfishly fucked off on holiday have not bothered to send her the awesome plan have come up with,unfortunately as it has her name in it am not able to post it here otherwise woud be dragged into the office and told off no doubt like social services;learning disability team did for posting the truth about what happened to self in their residentials.

the plan am thinking of is similar to auttreat but obviously on a tiny scale,shorter talks and there being more interaction involved for the person attending as am wanting this to be able to appeal to all audiences-people of all ages who have nothing to do with autism as well as those who are autistic to any level,those who may have an autistic relative/friend and people who work with us.

have got various ideas for what talks they coud use including one that seems to alarm a lot of the autistic community-how the DSM changes will affect diagnosed or yet to be diagnosed autistics- if at all...a class on how to deal with offline and online hate crime & cyber bullying of autistics etc....and classes that coud help the community or people who work with interacting with those of us who are partly or fully non verbal; eg, a makaton class.
-have got a good list wrote down,and in fact that reminds,,,need to go boot up the craptop before going back to mine,and get the file emailed to SALT as our internet is as useless as david cameron.




is anyone else planning to do something for autism awareness day,or now the thought comes into head woud like to do something? 
will be very interesting to see what lydia@autismhoya does.
not interesting to see what autism speaks do as they will hijack anything to get their
autism epidemic claptrap across and thus encourage donations from the unaware.

new years day-project poopy baby

got sent photos this morning by sis.

this involves keeva [yeah,am not going to bother googling for the irish spelling,it fucks the sis off when its spelt like it sounds but thats her problem for using a language that almost all native irish people dont use].

she got poo all the way up her back again-aparently this is normal for keeva as am seeing it every visit or so.
like had said in new years day post; what is the point spending money on nappies for her when her back appears to be one itself.

sis gave her a baby wipe wash but it didnt really do it well enough so she decided on a bath.

was asked to help which was proud to do so being the auntie of this little hairless thing afterall.

sis did the washing and em sat on the toilet and was told to hold towel open and after that,to hold her on knee.

her little toes looked very strange and funny and it was funny tickling them.
anyway here is the photo-

one thing had not realised until seeing the photo,had cut selff above nose due to head banging,guess that is one of the good things about classic autism; not being able to feel pain-OR not understanding pain to be able to feel it.

farewell to an old friend

one of the days this week,possibly thursday,had done something unimaginable.
for many years,parents,sister,support staff and random people have been going on about the very long fringe that was at the sides of eyes,it went lower than head and due to its ginger properties it was far to thick.

as a young child,had realised the fringe was able to block the pain and panic from the eyes of beings or pictures/posters so it acted like blinkers on a horse,and from then on it became a permenent fixture,woud never ever allow anyone to touch them,they were a part of self. at the same time,they caused acute sensory issues and was constantly scratching skin off because the hair was always flying about rubbing skin,it also affects the use of padded helmets am not able to wear them full time because of the sensory issues of the fringe making skin feel horrible.

so this week,had came to the decision to get them clipped off,and clipped off they were-am now a skin head as support staff had to go over the rest of head with the clippers because she said it wasnt at the same level as where the fringe was.

the pyschiatrist visited that day because of the mental health worsening and from questions he was asking its clear he thought had done a 'britney spears'. am now free from an almost lifetime of this routine,and am now able to wear padded helmets full time without having to take them off for sensory issues.

this was em and one of the cochin chucks yesterday [friday] before coming to mums-

and this is what hair looked like last night [with boomer added in for good measure]-

mum was back on the drink when came to stay on friday and she predictibly went crazy about it-even though for many years she has being trying to cut them off! she hates short hair and thinks she can control other peoples hair, personaly speaking do not give a damn about the actual hair have not got any value or hold on mine like so many non autistic people [especialy females it seems] do,hair is only there to give people warmth,its crazy that people- including the bro in law spends a lot of money on getting their hair slightly made differently when the damn thing will grow out of it soon anyway.

and why do people flip their shit about hair,especialy if its gone to short like mine or someones hair cut gone wrong, hair grows back quick enough unless have got a balding problem,people need to stop giving a shit what others think of them.


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depression

this is one thing that dont talk about often but am severely clinicaly depressed with added pyschosis ontop,and unfortunately within the past few weeks at the least the cymbalta has stopped working...mostly.

the depression had been triggered by the severe online bullying had recieved from a particular individual with borderline PD and pyschopathic narcissism if am correct in remembering his original un bullshitted diagnosis list.

the doctor said the pyschosis was due to the depression having been left untreated for so long,the autism has a huge impact on how em experiences it and how its recognised by others.

this week has been the worst,had stolen as many prescription codeine tablets as coud sneak out whilst being brught back home,and necked them all later on.
the week before had also done the same at home making sure no one knew; though they all were having a go because was wanting to go to bed instead of stay up with the nieces of mine,and they also said eyes were badly swollen,luckily they didnt find out.
am desperate to go away.

 the overdose this week was unfortunatelty found out as apparently was found out of it on the bed and they had searched trousers and found the empty pack.
they got paramedics out,and the manager came in with one staff to sit with em through this,they did tests and stuff here, but said had to go hospital and that was not going to happen whether under staff or police restraint.
so was not allowed any painkillers from then on because of the amount in system and was also not allowed to take all of the normal tabelts am on in the morning until the doctor phoned up and said it was ok.
they then did a blood test here,havent got a clue what for.

the pyschosis is very bad to plus have got obsessive thoughts which are immoral and violent,the ld pysch of mine thinks the pyschosis side of it is autism related; he thinks because am not able to communicate it; the brain is communicating in another way by halucinations and delusional thoughts,
he has seen many autistic clients whom are doped up to the eye balls on anti pyschotics because theyre in unsafe and unpredictible settings-instead of changing the reasons behind their lack of safety and unpredictibility.
-its why have never been prescribed anti pyschotics as he has put behavioral plans in place instead but the pyschosis has never changed,am just not passing it on to people as much.

had to cancel visit from sister and the nieces this week,despite the fact see them every wensday and also recieve a can of relentless/other cheapo redbull style drinks care of mum and dad which probably says how desperate am being at the moment.

when everything isnt so RAD

this is the very first post have written in the mainstream about having reactive attachment disorder.

most people assume the following about RAD-

• its only a disorder involving kids who have been through adoption/childrens homes etc.
• like autism,ADHD and all those other good fur nothing fly by night disorders;it magicaly disapears in adult hood [they assume that as theres bugger all research on how it affects us as adults]. 

its only been several years since was diagnosed,had been very severely affected by it despite not having the label,most people put it down to the autism or bad behavior.

mine was probably due to the fact was severely disabled which had triggered severe depression and alcoholism in mum so didnt really know of her much apart from the rare times she was sober and the only time that dad interacted was to beat the shit out of em for behavior and difficulties he did not understand,had felt real hate for him and lacked complete attachment to both of them looking back.

the LD specialist who used to work with em was also specialised in attachment issues such as RAD and this is how it finaly became recognised,as staff here thought the disconection to humans and inability to ask others to help was going beyond severe autism.

the manager we had back then was awful in those days and he made every issue of the attachment disorder worse,such as constantly threatening to move to another place because theyre unable to help em,seeing RAD behaviors as challenging behavior,not understanding why did not trust staff and making threats all over the place to crumble the safety net of mine.

the last residential service was living with completely turned the RAD up to max because was being moved from place to place to place to place... it wasnt just because am severely autistic but it had a permenent fix on the RAD mentality to.

-almost all of their staff were very neglectful to em,was regulary left lying red raw in own piss trapped down the side of the bed all day whenever had had a seizure,many a time had been brought back from unconciousness from mouth being full of concrete having been headbanging on the wall most of the day [minus a helmet,as they refused to get services involved for one of those].
-staff woud refuse to help with basic needs that was unable to do or needed such as getting nappies,tie shoe laces [am not able to tie them as there are to many steps],they woud physicaly abuse em when being bathed so em stopped bathing all togeter.
as for nappies,untile moving here em used rolled up toilet paper which is what had always done,it didnt work well but it was better than nothing.
em need physical and constant prompting help with each step in personal care but because previous homes had neglected this had just not cleaned at all even with baby wipes and was regulary visited by kidney infections ,though because was always staying at mums at the weekend,she woud bath em there-em wore shorts in the bath because of the sensory issues with water.

throughout entire life have always refused help,even when it meant hurting or risking self,people still confuse that with militant independance and many have even gotten offended because they think its because of them.
when there was a situation of needing help,that inbuilt concept that triggered the action to go find people to help was missing,people assumed did not need help then as well and thought was a lot more able than actualy was which had led to all the problems have had here.

one of the triggers that stopped em from eating food for many years was actualy staff forgetting to make dinner but they always told staff next on that they had fed em something or other.
em wasnt having that control stripped away,though besides that it was largely an autistic issue.

 whenever em used to be desperate for something,such as drink of mine; which is in a locked cubord,instead of being able to ask for it even in sign language or PECS woud try and tear the doors off-it worked a few times but got in serious trouble with the arsehole manager who thought was being deliberately challenging and not desperate & unable to ask for help.

the boots of mine were laced ones,em woud walk around with these big mountain horse steel filled yard boots [mum calls them clod hoppers] with the laces flopping about some staff who didnt know em well woud say to tie laces and when telling them am not able to they woud say am clearly able to because am able to use a computer-they ALWAYS said this whilst doing something for one of the other residents who dont have any issues with what theyre being helped with but because one of them has infantilism [he is actualy a high functioning adult when staff arent there and isnt believed to have autism by all staff,he has borderline PD ,bipolar and the UK definition of learning disability] and another is profoundly autistic but able [he even has a laptop and an ipad and can use the internet without help], they assume they cant do anything for themselves,thanks to them they enabled their learned helplessness.

the arsehole manager made the RAD so much worse by telling staff not to help and only get involved if em ask for help.
whenever em fought against his bullshit he turned around and said 'who is the pyschologist here?' he had a fucking pyschology degree! what a load of shit,one of the support staff had a pyschology degree to and sister of mine had a pyschology degree;it didnt mean they were a pyschologist.

the LD specialist em had before current one was an expert in attachment problems and that is when things finaly began to change for em,very slowly though due to the arsehole manager still being here,he made em feel so unsafe as he continuously wined about might have to be transfered to another residential placement whenever em was feeling unsafe or going through a pyschotic or severe depressive episode-he felt that was like a form of control but it just wound em up so much woud end up exploding and either fighting him or doing some serious self injuring.
after that he woud say it' proved what he was saying' or some other bullshit.

he used to say when em came in bedroom and hid away in the wetroom of mine,that was trying to take staff away from the other residents-despite the fact no staff are for specific residents,and the fact woud go in the wetroom to isolate self in a small space which was more comfortable,em was catatonic and severely depressed in those days and he treated em like shit which made em even more suicidal and reach for something to strangle the carotid artery with but he even woud shout about that been attention seeking.
em was isolating self away from everyone at that time and em actualy hated the human race because of him.
em have no attachment to humans whatsoever-way beyond the effects of severe autism and will always put animals and even insects first.

he got sacked eventualy because he was the power of attorney of mine and ended up not paying many care bills for over a year if remember correctly,
em was in a lot of debt because of him,was actualy left with no money every week for a long time to pay it off when staff said it shoud have been him who paid it off.

his sacking has helped em get so much better in terms of the RAD.
am now able to get certain staff for help,people understand needs a lot better because am not hiding away from them anymore.


so yes,this is lifelong attachment disorder,all the chickens of mine have it, they cant seem to unattach themselves from porridge.

the tragedy that is disability

tragedy-

trag·e·dy

   [traj-i-dee] Show IPA

noun, plural trag·e·dies.

a dramatic composition, often in verse, dealing with a serious or somber theme, typically that of a great person destined through a flaw of character or conflict with some overpowering force, as fate or society, to downfall or destruction.

the tragic  element of drama, of literature generally, or of life.

 please stop feeding this mindset to autistic and non autistic kids and adults that autism in any severity is a tragedy.

some of us grew up being resented on a daily basis due to our level of autism and lack of support or education for parents,mine used their fists and anything they coud grab hold of to beat every autistic and learning disabled trait,difficulty and behavior,regulary outloud said they wished had not been born,or was like more sister,was made out to be nothing but a lifelong burden to them by the ever useless doctors,whom had told mum only brain damage caused autism.
all of their tragic attitudes rubbed off on em throughout entire life,felt was  useless and people around em were only to quick to highlight that.

mum and dad had no idea em was aware of their discusions on a possible childrens home placement.
was made to feel like the tragedy of the family,the one they piled resentment on and hate because was not intelectualy or school wise on the level with sister plus she never was any trouble at school she was just socialy impaired and shy.

it wasnt until em was in the residential services am in now that the mentality of mine changed,these guys to be specific[link to ems incubation project page,its out of date as they said theres no webspace left]- *click here*
it isnt that believed coudnt do anything but that had believed was worthless and useless and didnt deserve to be here because had caused so much suffering to the family.

the residential centre am in over the past few years has helped work on re programming that thinking.
they also have taught the family am not a tragedy,am not a stain on the families good streak.
most importantly they have helped self to accept self instead of loathe and by christ that was an achievement.

they have helped em to understand own autism and how it affects others on the severe and profound spectrums of autism to,without this understanding woud not be even near aware of how deeply it affects others and it is this why understand so many parents think we all have to fit one stereotype or another to match their idea of what definition shoud be.

the problem that thinking of us as a tragedy causes is exactly what have just wroten above,it creates such an embedded self loathing mentality and possibly depresion for the autistic who has enough awareness of language;and both deep resentment,hatred,self loathing and depresion for the parent.

just because we are born differently to the wishes of the parent,doesnt mean we cannot have a life which is comfortable,acceptable and interesting to us, it does not mean we cannot have a quality of life.
every profoundly autistic em know in this residential centre has a high quality of life.
the adult profoundly autists both have a job once a week,they even attend a mainstream [UK] FE college.
one of them is even able to use normal public transport no problem,and they both access the mainstream community.

with the right support,clear boundaries in place,sensory integration and behavioral issues worked on, chances to communicate easily and understanding and a safe supportive but independance encouraging place to live in; autistics can have a great life,there is no tragedy to our lives or condition,the only tragedy is the serious abuse some of us have recieved [and unfortunately for some will stil] in care......
....the lack of understanding,the lack of coping with us leading to some autists being spoilt all their lives and thinking they own everything......
.....the autists who are completely aware that theyre using violence to control others......
....the people who target us/manipulate us/groom us and bully us online because of our level of autism they see us as weak whilst thinking theyre 'hard' for bullying and predatarily targeting a very vulnerable adult......
....the legal lack of benefits to survive on when we live in residential care..... ........the lack of understanding off our shitty govnernment who continuously shuts down day services for us and leaving many stuk in the house because they cannot work,cutting funding on special education courses for us not to mention some years ago when they removed all funding all together for people over twenty five going to special colleges...........
.......cutting social services funding so they had to get rid of people who didnt meet the highest level of critical needs which has left vulnerable people without care.......
now THAT is a tragedy.
THAT is a tragedy we need to cure.
-see our real tragedy is other people!
-our tragedy is the media and its inability to make people aware of autism without portraying it as a kids disability or a tragedy on mankind.
-our tragedy is having organisations whom are biased towards ideas such as cure representing us,they dont give a stuff about our voice either and think even those of us with severe or profound autism need our parents to represent us.
-our tragedy is these biased organisations portraying autism as a kids disease to get more donations coming in,most of which goes on cure research AND NOT supporting the autistics who exist today and are struggling to survive.
-our tragedy is the lack of basic respect,rights,advocacy, and human equality that those of us with severe or profound autism get from the autistic community, isolating us when they develop advocacy or autism spectrum forums,or when theyre standing up for the spectrum.
-our tragedy is the autism and autistic communities arguing between each other about what autism is and "how their kid is more autistic and disabled than some other kid and how people in the autistic community dont represent their child because theyre able to use a computer and type",instead of getting together and campaigning for better awareness and understanding against the REAL problem-the bastard disablist governments of our countries.

PECS

Being a makaton user,it is sometimes very difficult if it is the only form of obvious communication on offer to self when fully non verbal,don't have quick-or no access to laptop or PDA [usually because batteries have ran out] and the person am trying to sign to will only respond to limited number of signs [eg,backwards 'peace' sign or just the one finger flipped up].
That is where PECS comes in.

Have now collected a huge pile of PECS pictures-most of which do not fit in this large PECS book [which not only has standard pages but also added ones,ones that have been adapted for the book,and also ones that have come from the smaller PECS book that had been using before it]:

Thanks to both the current autism service am in and NAS,they have made communication a lot less difficult,for self and staff,and am not having to spend ages messing about looking for one PEC in the bumbag anymore either-that is now gathering up dust.

The current autism service had also provided much better TEAACH/PECS time line/whatever service are in-wants to call them boards than what had used at home which did not have enough space for what was needed.

All spare PECS are kept in seperate mini sandwich type boxes,and have also got the alphabet in own style of finger sign,attached to
string.

Have got a very snazzy looking horsey 'disability' bag to carry the lot in, had been in a small tack shop called bits and pieces one day grabbing everything in sight when had spotted a awesome small blue!! bag from shires 'buddies' range-it is now the official 'disability' bag, taking over from the recked n retired bear camo rucksack,it holds blue badge,PDA,ear defenders,all the non booked PECS,spare velcro,ear plugs,horse bix [pepper mint flavour,looks like small shredded wheats but is for horses and they like it a lot]...
Would always recommend trying PECS if self or child has got a need for it,it would not stop self or child from communicating in any other form it can have the opposite effect and make want to communicate.

One of the big issues have got with PECS is it is not very accessible to the individual autist or parent of autist,the major programs for making own PECS,such as the board maker series [screenshot of boardmaker]:Are perfect for individuals and not too difficult to use once have learnt how it works,but they price us lot out by charging at what only organisations/charities/clubs/schools etc can afford.

And SALTs take too long sorting PECS needs out,if they even get that far,had gave up waiting for P/books from own SALT and used several small PECS books owned by the organisation instead-with a belt in one for a strap and a technics lanyard for the other-
until...had been given the large blue one near new year.

Why isn't PECS software a part of open source now,are there no programmers who can see the point of it,or maybe have PECS using family instead?
Heres hoping it catches up with text to speech,speech to text and screen readers in open source in the near future!