Monday, 15 September 2014

fundraising,help is needed!

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.

 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;
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.

Tuesday, 26 August 2014

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.

Saturday, 16 August 2014

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.

Friday, 15 August 2014

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?
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.

Monday, 11 August 2014

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.

Friday, 8 August 2014

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.

Tuesday, 29 July 2014

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. ;)

Friday, 25 July 2014

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.

Thursday, 24 July 2014

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-
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.

Tuesday, 22 July 2014

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.

Saturday, 19 July 2014

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;

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.

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.

Wednesday, 16 July 2014

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.
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.

Tuesday, 15 July 2014

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.

Sunday, 13 July 2014

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.

Saturday, 12 July 2014

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.

Thursday, 3 July 2014

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-

Sunday, 29 June 2014

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; 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.

blog under construction-business as usual though

have decided to alter the blogs design a bit because it was so small that it hid some of the choices, am also in the middle of redesigning the logo because it features tito;the beloved hand reared pet cockerel who was kidnapped last july along with other babies of mine and am going through a lot of pain with what happened lately,plus the background itself is shit-am not very good at graphic design and only use GIMP.

have also turned comments back on; so that everyone who is registered or uses an open id or something like that can post,the reason had not done so far is the blog was getting spammed and coudnt work out what was a genuine question and what was bullshit.
if anyone with a blog has got any ideas on fighting spam,please share-woud be very greatful,thanks!

Wednesday, 25 June 2014

special olympics competing

finaly have an update on the special olympics front.
am now a athlete of both the cheshire north & bury special olympics clubs.
from next week am starting swim training with cheshire, and with the bury club am doing boccia from july.

Sunday, 15 June 2014

getting thanks off the NHS for activist work

had been given a letter yesterday from the head of nursing at the hospital that started the UKs NHS; trafford general hospital-otherwise known as park hospital back then [was born there in ninteen eighty four and have a shitload of history with that place. :P ].

the letter was in easy read format,which meant for the first time was able to follow a NHS letter, am not able to read from paper because cannot read on a white background,theres to much writing which causes a processing overload and the font sizes are small so family/staff have always read letters.

the letter thanks for the recent activism work had done at trafford general hospital,when had teamed up with trafford social services ID team [along with two other service users] and mencap;the national intelectual disability charity of the UK to train up the hospital on intelectual disability.

its great to be actualy thanked for doing something even though am not in activism to be thanked,its nice to know its been recognised.
here is the letter,

Friday, 13 June 2014

communication PECS have finaly been updated

finaly have updated PECS/symbols so am back in business,current PECS were all almost specific to the last residential home had been living in and was also made pretty stressed by seeing them because of the circumstances around the last place.

so thanks to a program have used for years;a completely free program called picto selector have managed to update a lot of PECS to ones that are far better than board makers.
still have many more needed but do not have a laminator here nor colour printer; last laminator hasnt ever been given back by last place as they used to borrow it all the time.
am being given a board [like in the following photo] to put in bedroom for the PECS,but for now have just stuck them all on the staff board.

Monday, 9 June 2014

bee aware of the hot weather-a bee allergy rears its ugly face

yesterday,was at the petting zoo at walton house and gardens,in warrington [can totaly vouch for that place by the way for those who love animals],its free to get in and it was hot weather so we always have a plan in place for that.

was being pushed around in the wheelchair by one of the staff who was overcome with mentalness because a male peacock kept spreading its arse feathers out at her and as a result was rolled into the fence a few times as she let go-thwack!
unknown to self it had quite rightly pissed off the bees who had been nesting in the fence [that was also unknown to self until we came across a sign and the staff read it out],and unknown to self again- had had no idea the little shits had unleashed its fury on an arm of mine.
can just remember this unbearable pain spreading throughout arm and it swelled up massively. had never saw the bee at all so he was pretty ninja at his job-but the jokes on him anyway as everyone knows what happens to bees after they lose their sting.

it turned out there wasnt just one bee there were two of them involved,so was stung in two places on arm very close to each other however managed to get most of the sting out from one of them.
we went to an NHS 'walk in centre' at the hospital and was advised to take an extra anti histamine as soon as we got home but had just nicked one of dads instead because we did a detour his way first to drop off a present for the nieces of mine [a swing from asda].

the pain was unbearable from the sting site and it was giving off some serious heat.
anyway,today woke up and it was seriously inflamed, they phoned NHS direct as being in protective care they arent allowed to use any over the counter medications on it,NHS direct said its just a normal reaction to the sting and to draw around it to monitor how bad it gets,so staff goes and gets a permenent pen marker of all things.

had also been feeling sickly today on and off-and had a really painful neck/under the jaw.
we ended up back at the NHS walk in centre this evening and it turned out the 'natural reaction' is a severe infection,the neck pain is the infection having spread to glands and have been prescribed high doseage anti biotics for at least a week.
picture included [the red and green marker doesnt show up as bright on the photo];

its an absolute fucking good job am not badly allergic to bees,am not even the type to go mental when they land on self so how the hell all of those running children hyperactive on ice cream and their poor parents following them closely behind got away without getting stung will never know.

DSUK; adventures into disabled snowboarding & other sports

am going to be starting disabled snowboarding soon,at the chillfactor in manchester;
we are already in the middle of sorting it out,costs are expensive until have got annual membership but am saving up and cant wait.
in about a week or so,will start doing the special olympics training twice a week,and then the snowboarding once a week and ten pin bowling once a week as am pretty good at that and have only just started.

hoping to save up for a three wheel recumbent [low level laid back position,bit like a pedal go kart] bike as well.

Friday, 6 June 2014

a bracelet that senses epileptic seizures?

recently was given a epilepsy sensor bracelet by the social services epilepsy team and it has helped staff know straight away several times when they have gone to the office or lounge so they have been able to rush in.
this is it;
it looks like cheap plastic crap but is a fantastic bit of kit,life saving.

Wednesday, 4 June 2014

ridiculous ignorance and discrimination from a swimming pool staff

went swimming yesterday at the manchester aquatic centre with the two support staff of mine,its standard for both carers to be allowed in for free as they are there to support.
however,this lady at the desk started arguing with staff asking why am in need of two support staff; as aparently disabled people only ever have one carer-thats news to loads of us then who are on two to one support.

staff sorted it out with them in the end and both got in free,but its a small sign of a bigger problem, most places do not allow two support staff in for free as they think every disabled person only ever has one staff- knowsley safari park,blue planet aqairium, and lego land at the trafford centre to use some examples are guilty of this and am expected to pay for the other carer which isnt possible at their prices.

when will the general public understand that not all disability is equal,many of us have higher support ,behavioral and physical needs that require two support staff.

Wednesday, 28 May 2014

a short post;finaly in with a special olympics GB swim team

am now completely,officialy an athlete of a cheshire special olympics GB swim team.
its just took a while getting it completed as the head coach has taken two of the athletes to america to compete.
cant wait.

Tuesday, 27 May 2014

epilepsy; its serious business

have gone two days without having a tonic clonic epileptic seizure,it seems the worst might be over.
have been suffering with severe epileptic cluster seizures for two weeks and have been in hospital multiple times,one time had had a trachea tube put down throat,and another bad time;attached to an IV and on every monitor going in resus [the intensive care of emergency medicine] due to suffering from quite severe tachy cardia after the seizures and not having come around due to having so many of them.

the heat seems to be a major trigger for them,and am not sure if they are directly causing them-which mum and dad seem to think because they saw it happen when was a toddler,  or if the heat is causing stress and the stress is causing the seizures.
luckily the weather has changed from heat waves to colder weather,its a common difficulty for people with autism to control their body temperature but that hasnt been looked at as doctors in that area of medicine arent disability specialists.

have been increasingly suffering with the seizures ever since had had epilepsy medication halved to just over one thousand mg whilst was detained in greenways intelectual disability hospital,though doctors didnt have this in their notes,used to be on the maximum possible doseage of tegretol.

have been refered to the neurologist again,but if they request yet another bloody EEG am never having another one as far as live,last time had had one to see whether severe challenging behavior was being caused by the epilepsy [it wasnt] they had to keep using a special knife to cut off the super glued on electrodes then reaplying them several times a day for three days because had had so many challenging behaviors due to being put in a different environment and in a different routine, the neurologist said it was the worst damage he has ever seen to a scalp,still have a patch on head now which hair wont grow through.

Monday, 12 May 2014

a 'new' diagnosis

have finaly come across the assessment that was carried out whilst was sectioned at greenways LD assessment & treatment acute hospital,and discovered something surprising.

as regulars to the blog know,am living in the UK and what we call learning disability is what america calls intelectual disability.

was rediagnosed using the ICD10 from the UK definition of learning disability to mental retardation, and it also said mild mental retardation whereas previously had been told was under severe LD, because people were unable to seperate having severe autism from LD so had always assumed was under the severe LD bracket.
am not bothered in any form but just wish had known because have been using that label on self, have never really questioned what have been told by experts.

heres the assessment info and result forms.....though it was jan the twentyith had finaly ended up getting discharged on,they have also been edited by social services LD team to remove all personal information because this form is actualy being used to join a special olympics club swim team and the SS dont want super personal info on it.
am missing quite a few diagnoses to.
and have personaly edited the names and stuff out that do not want posted on here-
first page of the assessment
the diagnosis.

so,am now able to OFFICIALY call self intelectualy disabled or learning disabled;under the UK definition, am certainly not going to refer to self under the painfuly offensive mentaly retarded though, have got to much self respect for that.

thanks so much to L for bringing this form over today,will be great to finaly start competition swimming.

realising a painful past through film

last night had watched the autism film; the black balloon; 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.

Saturday, 10 May 2014

helping mencap and social services to educate a hospital on intelectual disability

this coming monday am going along with the UKs national intelectual disability charity; mencap, plus a buddy of mine-whose a fellow service user of the social services intelectual disability team... PLUS the intelectual disability team themselves to help educate a whole hospital on ID.
we both have severe communication impairments;his being much worse so it will be a challenge to get our views across,am going to be getting a new laminator this weekend hopefuly to make new symbols to help us and it will also hopefuly remind them that getting a book of symbols in every ward and making sure all frontline staff know about it shoud be a minimum;there is a book of symbols in accident and emergency but very few of them know of it.

cant wait to do this as have got a lot of history with the hospital;mostly bad though was born there thirty years ago to,when was born;they told mum was going to be a violent child because of the fact am red haired and they also said woud have a very low pain threshold,ahhhh the eighties.

Friday, 2 May 2014

pimped out rabbit mansion

this is the rabbits home to be;a eight foot by four foot runaround run,a properly secured eight foot run-hutch runaround connector tube with cat flap things on both ends to shut at night,and a double level hutch.
its a rabbit mansion.
we havent put mesh under the run yet as we are playing wait and see,not all rabbits will burrow plus for some reason some muppet built the garden ontop of concrete near the top so its impossible to do that.
dad has built it all apart from the run,the support staff did that,but dad paid for all of it.
heres a picture of the whole setup just before the connector pipe got joined up with the hutch;

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;

Sunday, 20 April 2014


am on meds morning and night time plus have PRN meds for any time throughout the day/night, this is a photo of morning meds-

Saturday, 19 April 2014

photos of new rabbits

went to visit the rabbits of mine at the shelter today, theyre beautiful lion head bunnies.
here they are; bluebell [the blue/dark grey looking bun] and snowdrop;

new motability vehicle;part two with photos

several days ago the allied motability adaptions guy called around with a working/show room model of the new van am getting,its a peugeot horizon,and have got to pay over one thousand pound advanced payment on it then they just take the DLA high rate mobility,luckily its a five year contract instead of the usual three as its a adapted model,for those who dont know what motability is have a look here-

its got a ramp and wheelchair hoist so no staff have to push,two back seats-have to pay three hundred for one of them to be added as we are often going out with mum and dad and behind the back seats self will be sat in the wheel chair which has front and back locks on it and a seat belt,we went for a drive in it and its the most smoothest drive have ever had,the guy had said it has car suspension instead of van suspension,the last car of mine is acutely bumpy on the road as he said the nemo MS has van suspension.
have ordered it in a nice metalic blue colour.

the power of attorney has got to sign all the forms and it shoud be applied for on tuesday hopefuly.
the guy is also asking motability for an extension on the contract of current car whilst waiting for the new one.

heres photos-

Friday, 18 April 2014

easter bank holiday;shit

a small post but am fed up today,all the swimming pools close early for easter bank holiday, and the only time am able to go is late on or extremely early,its bad enough its the school holidays but now bank holiday as well.

Wednesday, 16 April 2014

getting even closer to final swimming goal

managed yet another swimming goal yesterday,the final goal is to go to sandcastle waterpark in blackpool,its a lifelong wish.
went to a PUBLIC swimming pool to see if woud be able to manage coping with it, and did indeed manage.

firstly,we went to stretford leisure centre in manchester,they coudnt do more to accomodate self, they were so helpful.
they let the two support staff of mine in free without asking for company ID [unusual,for a business-they usualy think all disabled people only ever need one carer and charge for the second staff]they also were extremely helpful for mum and offered her as many floaty type things as she needed for free.

however,after self had got wetsuit on,and we went to see the swimming pools,we noticed they were all laned off and the shallow pool was completely taken up with kiddies lessons.
so they phoned through to urmston leisure centre and were told in half an hour all of their lessons were stopping and their pools woud be open swim so we went along and didnt have to pay as we paid at the other pool.
urmston were just as accomodating and they had a permenent hoist fitted over the pool which is good to know although had just thrown self out of the wheelchair and onto the floor and slid into the pool but the hoist is needed for getting out.

had an awesome time,so calming,we had the whole shallow pool to ourselves as everyone was just heading to the main pool.
despite being only the second time to have swum,am able to do the 'doggy paddle' now although only using arms and can do the back stroke but in an adapted way-and not a float in sight,mum just uses the body board now as it gives her more confidence,she is really phobic.

had worked out that once the person starts over thinking and stressing it knocks them off balance and makes them sink,so its about keeping breathing slow and staying calm.

am looking forward to when the school holidays finish as it means the kids will bugger off back to school and the pools will be free for us adults again,as am looking forward to checking out both the manchester aquatic centre [its laned off at evening/night and full of kids during the day during easter holidays]  and DEFINITELY sandcastle waterpark,it just so happens that the day the kids are back in school is the day am due in hospital to get three teeth out under a general anaesthetic and also to help train nursing staff on intelectual disability,shit happens.

heres some photos of self at urmston swimming baths;