fundraising,help is needed!

greetings,
have got something to announce and am looking for help from bloggers to dig deep into their e-pockets and support a good cause.

recently in the UK,a evil little pyschopathic waster set fire to the UKs biggest dogs home outside of londons battersea and the result was the death of over sixty dogs,mass destroying of many buildings, mass tranquilization of survivors due to the acute stress it caused and mass smoke inhalation injuries.
http://www.independent.co.uk/news/uk/crime/manchester-dogs-home-fire-teenage-arson-suspect-bailed-as-dog-selfie-donations-pass-12-million-9730930.html

 was really affected by this,went out and bought dog food for one of the collections our local ASDA was doing for the home and also donated some money through pets at home.

have decided to a sponsored swim for the dogs as well and last night had started a just giving page;
https://www.justgiving.com/em-scott1
if anyone coud donate-however small or share the page somewhere woud be truly greatful.
am going to do the swim when have collected enough sponsors.

an open letter to companies; RE two to one support

dear companies,
please!! consider looking at the way support staff are accomodated when those of us with two to one support [or three to one in some cases] pay our money to access the companies services,we are being left out of accessing many services because of ancient company regulations that do not recognise our needs.

those of us with severe disabilities are already on very little money as we have to pay all of ours towards care,mobility and disability needs,we dont get extra money to spend on paying for two support staff to come with us into services like the cinema or an aquarium for example.

we have two support staff because we have high behavioral/support needs,its a NEED not a luxury, the second support staff isnt just coming along for a free ride,theyre there to work with us and keep us safe while accessing the community.
so why is it companies have great trouble recognising that disabled people often have more than one support staff?

yesterday,had gone to the cheshire game and country show in knutsford,cheshire and they said they woud accept one support staff in free but not two,if it hadnt been for dad being with us who was a paying customer woud not have been able to go in as needed to be supported by two people in there.

why cant service users with two support staff have their support staff show their work identity badges to show they are working or require a service user registration system so that we are flagged up on the system as needing two staff? knowsley safari park has a similar sort of system in place for those of us who have a lot of support staff so why cant other companies put something into place? we are paying customers after all and it isnt fair we are being isolated out of society.

visit to knowsley safari park again; wild animal photos!

went to knowsley safari park near liverpool again today;am owner of a annual membership card there and can go as many times as want.

borrowed the iphone of one off the staff because tablet wasnt charged.
the baboons tore away at the car which was funny but staff were banging on the window telling them to get off,also telling them am going to end up paying for their damage when am trying to save up for a top of the range wheelchair,pretty funny as doubt the babboons understood that rant or cared about a wheelchair

anyway,heres the photos;

 a baboon with his?/her? nips out.

 camels sheltering from the heat,their bretheren and sisteren from afar woud laugh at them for finding english weather hard.

 some kind of deer? both enjoying basking in the sun.

 a mighty lion heading over to hump one of his mistresses, unfortunately spoiled by the reflection of a pets at home magazine on the dashboard.

 some type of deer again,beautiful spots.

 baby riding baboon,he is able to walk but kept diving on mamma.

 a toddler baboon who has obviously grown to big to ride daddy,but he didnt give up without a fight.

 tiny baboon baby,the support staff was pointing at the streak of baboon piss down the window.

 baboons just chillin, support staff in passenger seat kept trying to touch the paw through the glass even though it isnt ever going to happen, them bolton folk are strange.

 how cute is this little baby?

 we thought this baboon had been run over by one of the nobhead drivers who were busy speeding along,we banged on the window to try and get its attention,fortunately it got pissed off by the noise enough to look up slightly,huff at us and put his head back down again.

 we got mooned by a baboon while he was trying to rip off the rear wind screen wiper.
they managed to break plastic off the car and ran off with it as one of many trophies to put in their collection but got nothing else thankfuly.

swimming video

was at swimming today,special olympics isnt on in august so am renting out a private pool for some watery fun.
cant wait to go next week.

the 'r word' again

hey,its the old r word in the limelight again.
robins? rollercoasters? roosters? rhinos? roombas?
no.
robbing bastards? rigormortis?
not quite.

its retard/retarded.
have been seeing it rear its ugly head on forums the world over in recent months,including on a disability forum;AKA wrong planet where most recently one user today instructed people to act silly but not to 'act retarded'.
in this useage,its not a direct insult but it ignorantly and offensively insults those of us who have intelectual disability by people relating us to childish behavior,we arent children,we are adult with adult brains and dont deserve to be what people think of when they want a representation of stupidity,we deserve the same basic respect as everyone else,and woud especialy expect more from people who also have disabilities and know what its like to experience prejudice,stigma and disablist ignorance and insults.

am sure the support staff of mine will say am anything but stupid when it comes to general computer problems and having a visual sat nav in brain which has got them out of trouble time and time again.
the only stupid thing is the way we are continuously believed to be children in adults bodies, compare people to computers;we are the ones who have a single processor;we have a limited capacity to process things which has a impact on our functioning, non intelectualy disabled people are those who have dual core or quad core processors,being a single processor unit doesnt make us worser people it just makes us more limited-we age and become adults the same way as everyone else,just because we arent functionaly adults doesnt mean we are stupid or adults with child brains.

stupid is using a group of people have got no understanding of as a comparison for something- especialy when negative.
stupid is using a disability to represent a behavior that can be found in even the most highly inteligent adult.
stupid is when people are ignorant of a group of highly vulnerable people and choose to tarnish them and their disability by association; on the internet,knowing the majority will not have the capacity or the equipment to argue their own view back at them.

some photos of a sting ray and poisonous frogs

was at blue planet aquraium on friday,and managed to get some photos with the tablet even though it was dark.

 sting ray photobombing

 frog stuck to glass,sleeping.

being LFA and against the idea of personaly having a 'cure'

am pretty disapointed.
it seems am completely ignored by parents whenever have wrote am against the idea of the whole concept of a autism cure on self;am not against others having the choice or a best interest decision by their specialists and profesionals made in their favour if they have no mental capacity to make the decision themselves.
they go on to write as if they havent even read the posts of mine when am often campaigning for our view to be heard, they say their child is LFA,that LFAs cannot state how 'they' feel and its not something that shoud be lived with and shoud be cured-as if theyre blanking the fact am a living breathing LFA posting in front of them,they dont want to take in opinions that differ to their own nor accept that some of us are actualy able to communicate well in text form.


people say they wish their son/daughter/people with LFA coud speak and tell them what theyre thinking but when one does they blank it out of their minds.
people are still using LFA as a throw back to meaning just profound autism and a description of someone with total lack of communication and the most complex severity of autism known to man,LFA is a spectrum just like HFA and we are affected very differently-the only thing we all share is that we all have some level of intelectual disability and this is what makes our autism present the way it does.
someone with extremely complex profound or severe autism will have severe intelectual disability on top,mine is mild so the severe autism appears differently to severely autistic people with much worse ID.

am completely against a cure of self,because have lived a life as a severely disabled person, have developed experiences and thoughts and interests based on the way am today, woud not be the same person or have the same strengths and qualities that have now if it wasnt for being this person.
am also acutely against the idea of change and woud never accept something that means change, and nor woud everyone else with severe or profound autism who have good support and specialist equipment tailored to their needs available to them,change to us is like a dog chasing a cat,we will run as fast as we can or we will stand there and fight it-we wont let it happen.

am feeling not good that am not able to be understood by many parents of severely autistic kids as always thought they woud be allies against the sea of ignorance and misunderstanding that recieve in the autistic community.
please parents;please prove this wrong and sympathise with what am saying.

am very sympathetic of parents,mine are still affected by the disabilities of mine even though have not lived there in many,many years,mum is severely depressed;something she developed when em was five years old and she wasnt able to cope any longer,her religeon disowned her and blamed her for having a child posessed by the devil,the doctors had said she had a severely disturbed child who needed punishing,including for the non verbalism.
yes it is very hard for parents to cope with our needs and difficulties especialy when they lack the support and knowledge,but we can have good quality of lives and improve greatly with the right medications,the right support staffing behind us,the right secure environment,the specialist equipment,supportive and encouraging therapies etc.

as adults away from the family home we tend to develop much better friendships with our families, had never recognised dad as 'dad' until a few years ago,still dont ever use it though apart from online.
am just wishing to be understood,it is hard to feel good when are misjudged by the autism community and the autistic community.

managing a basic lifeskill

today,had gone to the cinema to see the purge;anarchy, awesome film woud recommend any thriller fans to see it.

but had also done something meaningful and something am pretty damn proud of,most people wont see it as a big goal but then it has to be remembered we are on different levels.
-staff made a roast dinner for mum and dad today and self/em had cut the potatoes before being put in to the pan to boil by staff.
am proud,no matter what other people think.

mum was drunk when we dropped the dinner off,but she stood there nibbling away at it saying how gorgeous it was and 'amazin grace' over and over,think she liked it. ;)

the challenges of severe autism;needing behavior friendly furniture

have been after a brand of furniture for years;called 'tough furniture',they make furniture for people with severe challenging behavior.
we had a corner cabinet made by them in the lounge of the last residential home but was told it was to expensive for a resident to buy for their own room,have always been unable to have tv/games consoles in bedroom because had smashed every one had had.

am unable to have a normal bedroom and because of behaviors live in whats called a low stimulous clinical setting.

thanks to being in a supported living care home rather than residential care am now able to afford tough furniture through back pay or saving,but yesterday thanks to a certain area manager from bolton who knew am waiting to buy a TF wall mounting or floor standing TV and games console cabinet with back pay, put a call out internaly in the support company and found out the company has got a number of mint condition TF cabinets stored away at their HQ.
so we went along today to check it out and imediately bought it,it only costed ten pounds when even second hand/slightly used it woud cost hundreds in a external/mainstream arrangement,am very very greatful.

heres some photos of the cabinet [its upside down by the way], the black tray at the top pulls out and stores things,the tv and xbox three sixty will go in there [once have managed to source a damn power brick plug,got another HDMI cable and got a game pad for it]

with doors shut;

with doors open;

moving onto next phase,a behavior friendly chair.
had had a small sofa put in bedroom when moved in but ended up trashing it along with everything else so it was all removed,a single seat of some unbreakable kind woud be better,its ridiculous that these special needs companies charge so much to buy stuff,taking advantage of the most vulnerable.

attended a cinema for the first time

and it went amazingly well actualy.
yesterday/tuesday afternoon,went to an odeon cinema to watch how to train your dragon 2 with two support staff.
have never been to the cinema before,but had got a CEA card- https://www.ceacard.co.uk/
before going which allowed support staff to go in for free,however as common with most companies; it seems they only recognise disabled people who have one support staff and not two, as only one was able to get in for free and had to pay for them which isnt fair because they are there to support self not there to specificaly watch a film.

had had a lot of haliperidol before the film so was able to cope with the cinema.
they showed lots of good trailers and woud recommend to everyone to watch out for 'paddington' which is out at christmas aparently, it looks amazing,its about padington bear but has slightly rude bits in it to so it isnt just for children.

the film itself was awesome,one of the staff went to sleep and snored through half of it,her face looked like one of those persian cats-and the other staff cried through it all plus we both laughed at the other staffs sleeping face.

am a huge HTTYD fan;have got the first film and the TV series;riders of berk on dvd and have got toys to,and a computer game,am specialy a fan of toothless because he is very cat like,and have also got a A2 size poster of toothless and hiccup.
heres one of the toys of mine;

looking forward to many more trips to the cinema.

the challenges of severe autism;low mental capacity with rigid thinking

today/monday,self and two support staff were out food shopping in asda,before we left for asda had taken two haliperidol anti pyschotic pills as normal which always do before going anywhere to lessen severe challenging behavior and its causes.
we got in asda and had planned to buy a few things,including a pack of four ice creams and sweet corn as treats for the children [AKA binky and mabel].

for some reason there is a specific lump sum of money for spends each day with three pound of that for activity money but it has always been spent on anything because am not able to do activities every day, recently we got a new house manager who does everything by the word-which means changing a routine of mine that has always been there because she was on shift as support staff today with a regular support staff of mine,and as often happens staff always act mega strict when around managers.

was in the ice cream isle when was told that had got to the maximum money and had to have three pound left over for an activity that didnt exist,so to get ice cream was going to have to take away somethings from the basket-these were all items that were on a visual list in mind and was impossible to wipe and become unfocussed on-its impossible to remove or swap any.

they started removing goods and had felt very very bad because of it, started hitting out, punching everything as well as head banging and was trying to stop them from taking the stuff out the basket;was sat in the wheel chair thankfuly so did not end up throwing self to the floor and head butting it like old times but ended up kicking,punching and biting support staff who were invading the basket,and then threw something from the basket on the floor in frustration.
am very sorry if had hurt them,and will always feel guilt for any actions towards others but their attitude towards self really hurt,they dont truly understand this aspect of self,and assumed was being challenging for the hell of it.
they said they were going to take em/self back to the car without any shopping so quickly put the breaks on the wheel chair and got really frustrated so more behavior came out,ended up having another two pills of haliperidol.

the thinking is,its a visualy planned mental list,and removing any of it makes no sense to self plus its very distressing to cope with.
they usualy calculate as we go along so we dont get this problem but they made a guess at it this time.
wish people were more open minded instead of using threats.

pulled into the twenty first century for AAC and autism apps

am not having to relie on laminated PECS and limited makaton anymore for AAC or timelines, recently/a few weeks ago had bought a asus memo hd...something tablet which has android running on it,its been bought purely for aac and autism apps but have added a few games to aid as distraction when having to wait for anything-which is a major cause of anxiety and severe challenging behavior for self.

these are the best free apps have come across so far;

autiplan:

this is a photo of tomorows timeline which am able to put together with staff support,they can also make the timelines from the office pc and am able to sync the tablet via the laptops mobile data connection.
its extremely useful and better than carrying around a clumsy laminated board with PECS that easily fall off.


alexicom;

its the best android AAC app have got,its easy to use and although it hasnt become a part of daily use as am still getting used to using high tech AAC again, its a favourite and hope it to become a regular part of communication.

if anyone knows of any decent free AAC programs for android,please post.

reprizentin special olympics

a small post but finaly got the athlete polo tshirt today,feel very proud to be representing the special olympics even though am at a low ability level.
hope to represent us in the next nationals but even if dont manage to get in,in time will go along and watch it,as know quite a few athletes.

rabbit cuteness;photos included

here is mabel and binky orally accepting some new tasty apple tree branches that their grandad had cut off for them.

 lady binkerton AKA binky playing the role of alex poleski from the hotel inspector, inspecting her house after a deep clean,she stormed the place before being able to put bedding in.

mabel digglesworth AKA....mabel carrying out the complex rabbit procedure known as the binky, when a rabbit binkies, it means they jump in the air and their body twists; in a fit of pure rabbit energy.

adapted cycling; autism friendly

went to the usual adapted/specialist cycling club today though attended a park in north manchester instead of wythenshawe park and rode a semi recumbent bike around the athletics track with support staff,whilst the other support staff sat and furiously washed her hands over and over with alcohol hand wash [she is OCD and a half].
heres some photos;

woud strongly recommend to anyone who can get to manchester,UK to try out this cycling club; wythenshawe wheelers is the best but its also based at longford park and north manchester to.
http://www.simply-cycling.org
theres no membership needed,just turn up and its two pound,plus any support staff with an individual can cycle for free with them.

a communication barrier of severe autism; pain

am getting really fed up of trying to communicate experiences of pain across to people.

as with the previous post written,the past few days have had very severe acid reflux and heart burn that was bad enough to present like a heart attack and had been in hospital as well as back to the NHS walk in centre yesterday to finaly get prescribed omaprazole.
whilst in the hospital,was shown a symbol based pain chart by the nurses and asked to point to the one am at in terms of level of pain,and was one step below the highest,she was like 'REALLY?, are you sure? its more like this level,not that level...bla bla bla', no amount of insisting worked and got really pissed off with her.

the problem is,am unable to communicate pain in any manner to other people,am unable to translate it into language let alone have the natural inbuilt prompting to tell others.
it doesnt show physicaly either and am not sat there shouting,the only way it shows in self is through severe challenging behavior when it gets extreme but that is always blamed on the disabilities and not pain.

am in constant pain due to the nerves injury in the lumbar region of the spine,have severe headaches throughout the day caused by sensory & information overload as well as head banging and none of this is recognised as real pain,people think am taking the piss because it doesnt show in a stereotypical way and this is why had ended up with the label 'addict' tagged onto NHS records thanks to a consultant having no fucking clue why am using pain killers every day despite being told by a specialist of mine and support staff who see self every day.
these painkillers dont even begin to cover the pain am in,theyre a very mild level of kapake co codamol and can only take six a day.
am fed up of being in pain and people not taking it seriously because am not writhing around shouting ow.

in hospital,yet again

was in the hospitals acute medical unit yesterday/monday from morning till night.
woke up in the morning experiencing severe crushing heart pain,had to sit up as lying down made it worse,took some gaviscon and it didnt work.
was very worried because am overweight and have always had a shit diet,the family has got a very big history of heart problems from heart attacks to angina and mum had a bad heart attack last year so we went to the NHS walk in centre and was pushed to the head of the cue which pissed off a lot of people,was told am tachycardiac and it needed further investigation so was made a inpatient next door in the main hospitals acute medical unit.

they said woud have to be kept in that night and was absolutely refusing that point blank and they didnt seem to take it in.
eventualy they did the blood test to see if it had been a heart attack as heart attacks show chemicals in the blood after a number of hours but because have got bad veins they had to take it from a vein over the thumb knuckle so its now a bit swolen and bruised there.
had had ECGs done and a chest x ray.
was severely anxious which showed in severe challenging behavior, had used up a lot of PRN halperidol and diazepam and then had just decided had had enough of people saying it wont be long until we have got the results and can go,so had just jumped into the wheelchair and wheeled self out,was told by the nurses because of mental capacity am not able to self discharge and had to wait for a consultant to do it,and if end up leaving the hospital they woud have no choice but to call the police as they can legaly force self to come back.
the two support staff with self told them that woud be the biggest mistake possible to get police involved because of PTSD caused by them and instead was persuaded to just wait outside accident and emergency instead-absolutely cannot tolerate being in a hospital ever since was locked away in one for four bloody months!

earlier on had been given two medications for severe acid reflux and severe heart burn,which removed the pain.
eventualy the blood test came back and they said it had had an error so they didnt know what was in the blood,but they said because had had a positive reaction to the medications it was most likely a severe flare up of acid reflux and heart burn,and they didnt want to cause more problems by having to do a blood test again.
was told if experience severe heart pain again to go back again though because of family history and to not feel like a time waster.

disapointing search for a good waking night support staff

for those who dont know,have got two support staff at all times and at night there is one waking night [someone who stays awake all night] and one sleep in staff [someone who sleeps in the office].
waking nights are always the worst shifts to find good support staff,especialy agencies because they think they can get away with sleeping as they often get moved around a lot.

recently,had gone to bolton head office to help interview a possible waking night for self, the lady has a young son with severe autism as well so had some understanding as to what it is like for self,and she said she wanted to use what she learns with em/self to use on her own son.
on the face of it was the best waking night staff had ever seen,she had very clear english-easier to understand than many native english people that know,explained things in a way was able to understand and she was just very caring with out the patronising and gave a damn.
it wasnt just self that liked her but so did the manager and other staff in the interview to.

have just found out one of the references the company recieved from previous job places she has worked at were asked if they woud employ her again and they said no,but for legal reasons aparently they cant put why.
am gutted because really liked her, does anyone know what kind of reasons woud make a company say they woud not employ a person again?

am going to ask the manager to see if they can hunt down what went on,if she has made some mistakes but learnt from them woud see no problem in having her here.

taming severe challenging behavior

in recent weeks had been experiencing very high levels of SCB because of changes that were being discussed.
this week ended up back in hospital seeing the crisis team but because am under the learning [intellectual] disability team not the mental health team and they are not experienced with ID and this level of autism they didn't want to add any medications and mess up another teams protocol but surprisingly they said to take the remaining nights painkillers to help relax until was able to see the psychiatrist the next day,its funny because had been offensively called an addict and removed off all painkillers last year by a stomach consultant because he didn't understand how autism and ID causes sensory and information overload headaches,then ended up in greenways intellectual disability hospital and was treated like shit for that very wrong label of addiction and although had been put back on painkillers there they reduced them down to a mild dose and only up to six a day.
its funny because was suddenly being told to abuse the things that doctors said had originaly been doing.

am now on a much higher dose of the anti psychotic; haliperidol and thankfuly it is helping self to stay stable in behaviour and have not hurt anyone though did end up smashing up bed the other day.
have now gotten back into gaming and have bought several games including 'goat simulator' and 'saints row IV' but am getting really pissed off as goat simulator is the only one have been able to get working the others need to update massive files and being on a one gigabyte maximum dongle at ten pound a time it isn't possible,am absolutely fed up of not having a proper internet connection have been asking since before even moving in for one.

the last residential home have lost all the xbox three sixty games of mine AND the power brick cable which is very hard to source/buy because its got to be made for that specific xboxs date;was told that by a game shop.
they also lost the laminator AND sat nav of mine to,plus many dvds-am really pissed off with them it isn't fair to say theyre lost-how the hell can stuff go missing when they were locked away? they shoud pay for them,they took the laminator and satnav all the time without asking yet they woudnt let self have the wifi password until had used the program 'cain and abel' to get it,it was funny to go into the router admin page and boot staff off the network when it was getting to slow.

am not allowed to get anymore shooty/first person shooter games because of the violence in them but unfortunately that's all have got installed on the laptop; assault cube,saurbraten, nexuiz,smokin' guns etc-all open source stuff.

besides that,am greatly obsessed with how to train your dragon and in particular; toothless the dragon, have got the film and the dragons of berk tv series on dvds as well as toothless toys in large and small form plus have finaly added a bit of decoration to the pure white bedroom walls;a large breaking bad poster-another thing am still very obsessd about.

finaly,first day at special olympics training;photos included!

started special olympics swim training tonight,got one to one teaching in the water by an awesome coach,finaly met the two people in charge of the team and got to know some of the other athletes as well.
didnt think it woud be possible but thanks to the specialist help from the coach was able to learn different strokes in an adapted manner,they think will be in their fastest class in six months,heres some photos-