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;

Sunday, 13 April 2014

a lifelong goal reached; swimming

on friday,the self, two support staff and mum went along to ivy bank swimming pool, a private swimming pool that can be rented out.
it has been life long wish to swim and go to waterparks but the very severe sensory issues that suffer from also affect ability to have water on skin.

had wore the wet suit and took body board along,and despite never having swum before had soon got the hang of it as its a matter of keeping calm to avoid sinking.
mum was severely phobic of water and had never swum before either beyond trying to take self and sister to a pool when was a toddler,so everyone encouraged her to go in and she really enjoyed it to.

played water volley ball with the staff for a while whilst mum huffed on her e-cig and just lay there drifting which was very calming and helped self to relax.

it was a awesome experience and am going swimming again on monday-with staff and mum,heres some photos.

Saturday, 12 April 2014

getting two pet rabbits!

won a £120 grant from creative support which has paid towards a beautiful double rabbit hutch; it was ninety nine pounds at pets at home.
we got it during the week-flatpacked of course like everything now days and its only just been completed tonight/friday night.
have been buying little bits every day for weeks from pets at home for the rabbits.
am going to visit a sanctuary on saturday morning to start the rabbit aquiring process off, theyve got to make sure am not a rabbit neglecting pyschopath first and then they can come and do a house visit to make sure its not some cow shit slum.

am a big fan of bigger rabbit breeds and hope to get a medium sized rabbit at least,had a semi lop ear many years ago,had asked staff if was allowed one of those that are the size of dogs but am not allowed unfortunately,theres a gorgeous chilled out white mammoth sized rabbit that freely wanders around manchester pets and aquatics in longsight,manchester.

heres a photo of the rabbit cage,after staff finished it-

knowsley safari park; photos

several weeks ago,had gone to knowsley safari park near liverpool in the UK,had had an issue with the park before we even got in; they only allow one carer in free; why do companies still not recognise some of us require two to one support? creative support still paid for the extra one staff but still feel its discriminative and will be bringing that up with them.

had brought along dads D-SLR camera,and took shit loads of photos,then cropped them to remove useless space.
we saw everything from lions humping to support staff looking like she was trying to french kiss one of the monkeys through the glass in the car [photographic evidence of such event],we had gone the 'unsafe route' which means having monkeys jumping all over the car but it was the best experience ever.

heres the photos-

UK learning disability awareness week

for UK learning disability [US definition=intelectual disability] week this year,am going to be going to an NHS hospital and training the hospital staff on intelectual disability,some are genuinely awesome and dont need training to understand us but the majority need a lot of training in many areas and who better to give them real world experience than those of us with it?

am going to be going along with the trafford ID team and a friend of mine/a fellow service user of the team, funnily enough-well it isnt funny actualy as will be in a lot of pain--am going to be in exactly the same hospital on exactly the same day early on, am having the usual general anaesthetic/day surgery treatment on teeth,getting them sorted out plus three of the little bastards have to be removed [theyre putting in special falsies at another date when gums have recovered-the falsies will be custom made to be epileptic and head banging safe,mum always did tell doctors at a young age they shoud have just whipped them out then-hers were all removed at twenty one,mine were damaged by severe dental fluorosis;caused by a brutal lifelong obsession with eating toothpaste ever since they tried washing ems teeth as a baby/toddler].
so am going to be teaching a load of medical people about ID [and hopefuly autism] on the job as well as dozing along to the conference

am going to be bringing up issues with nurses about how they communicate to us- they need to be talking to us not around us,and if they need to talk to our support staff/family/carers they shoud apologise to us and say we arent being ignored.

they need to have PECS books of adult friendly symbols available in every ward,not just accident and emergency, and even then not all staff know of it.

they need to be trained in makaton;none of them are.

they need to recognise we have a different understanding of pain,and just because we cant explain it well or show it well it doesnt mean we cant be greatly suffering.

they need to understand that severe challenging behavior is not an attempt at making the nurses lives difficult,its a form of communication from very desperate individuals who cannot express it in any other way.

am very looking forward to doing it as have got some MAJOR issues with that hospital.

Friday, 11 April 2014

getting new motability car

getting new motability car,a peugeot partner multispace WAV,its got a ramp and wheel chair hoist.
the new car shoud have come last september but that was the month had got sectioned so motability allowed us to keep the car until this month,a great charity.

Tuesday, 8 April 2014

the hospital environment for autistics & how it can be improved

am basing this on the personal experiences of mine in a intelectual disability hospital, otherwise known in the UK as greenways learning disability A&T acute hospital,but it can be applied to pyschiatric or forensic secure hospitals to.

had had major issues within the four months had spent at greenways locked up.
greenways and any very large environments like it are no place for autistic people.
they are noisy,echoey,extremely challenging so patients always have anxiety on the go from the fear of being attacked by other patients and in many cases we are not protected enough from the people who are predictibly unpredictible with extreme violent behavior.
and our sensory issues are not understood nor accomodated for- even the hospital catering company refused to cater for the severe food sensory issues of mine so woud go days without food but they catered for vegitarians,halal,soft diets etc.

oh and then theres the hearing sensory issues.
was shouted by some staff that am being selfish for asking if the main lounge tv coud be turned down-at least just a bit to make life a little more bearable because there was a patient with hearing difficulties,in their world; hearing difficulties trumps the extreme pain we feel from sound.
typicaly staff in hospital environments are being trained in hearing difficulties but not in the hearing impairments of those who hear to much such as with autism,hyperacusis and misophonia.

 was told by staff,shoud never have been a patient there because am not sick like all the other patients, they basicaly said this to someone who was seeing,hearing and being instructed by a threatening halucinated bloke called james,theyre a fucking joke.

was shouted at very badly to stop any distressed behavior of mine-told 'OTHER PATIENTS ARE ACTUALY SICK HERE AND WE HAVE GOT TO ALL COME AND DEAL WITH YOU'.

they were always shouting about em being attention seeking and how pathetic it is; was desperately trying to strangle self with what ever bit of sheeting or clothing was wearing-not to die but to go unconcious as this temperarily stops blood going to the brain and for self anyway it makes the mind go blank for a while so woud forget the mental torture was feeling from some of the staff there and itd also temperarily stop the halucinations.

was on level three monitoring which meant having to have someone next to self at ALL times, even when on the toilet or in bed.

being a sectioned inpatient in hospital is fucking mind numbing,prisons have better services on offer than we do,they get to have their own tv and games console,they have a pool table,they get education/paid basic work, we dont get any of that,not in intelectual disability acute hospitals anyway.
these hospitals act like they have loads of shit to do but arts and crafts every day from morning till night with very limited materials and having extremely unpredictibly violent patients running in and out the craft room screaming and hitting out; causing anxiety for everyone isnt what woud call fun.

every day was pinned down on the floor in restraint with them on top and their knees forced into ribs with arm and hand twisted behind back for refusing to do staff demands or for behaviors that usualy werent harmful to anyone else and this is partly why am left with a spinal injury.
some staff are drunk on the authority they have and will restrain for any chance they can get.

 so what needs to be done in the UKs intelectual [AKA learning disability] hospitals [apply this to other hospital where it applies]?

#better training on autistic sensory issues,and accomodating these where need be.
#making staff aware of the sound levels in these hospitals and to keep it to a acceptable level.
#better training on the entire intelectual [AKA learning] disability spectrum and how these present,not just focusing on the profound.
#better training on self injury of intelectualy disabled patients and why we do it;ie,stop thinking we all do it for attention.
#reduction in full restraining of patients,diverting behavior using other ways that dont involve threatening or being nasty or bribing to the individual.
#reduction in the use of benzodiazepines for severe anxiety/severe challenging behavior-looking at different medications-we will always have severe challenging behavior but benzos become physicaly addictive and do not last anywhere near half a year of every day use before losing all its effectiveness.
#better training in addiction/drug dependancy in people with autism and intelectual disability,it might stop cases like mine happening if doctors and nurses are able to understand why just because we cant explain our pain well it doesnt mean we dont have pain and are not doing it to feed addiction,thats NT think.
#picking up families of those sectioned in hospitals who live far away,this coud be part funded by the families themselves or a voluntary service of locals coud be set up,this woud help those of us stuck in hospital see our families when we live hours away and it woud be a big benefit to patient mental health,it took mum three hours to get to mine and she only managed to come once a week.
#training staff to stop verbaly announcing a burden on patients for showing behaviors;whether challenging or not, theyre in hospital to get better not to be treated like sht,they arent choosing to do their behaviors;very few people are purposely aware of such.
#if patient activities are broken-get them repaired ASAP,this is their life for however long they are sectioned or informal inpatient for,the sensory room and and computer were always broken at mine; must have only accessed the internet twice in a total of four months whilst sectioned there.
#allow the use of patient laptops when they want to use them if they dont sleep at night and no sleeping medications are offered,they put a ten am-to nine pm limit on mine which was very wrong as the only thing was able to do then was sit and think-going crazy causing more challenging behaviors and shitty attitudes from staff.
#dont allow those who are high risk for attempting violence towards others into the public areas,of course the individual needs a break from seeing the same four walls of their room but it is much more unfair on other patients to be attacked, many of us cannot show or communicate how we feel to others so we are just assumed to be hard and dont need protection from a beating.

Sunday, 6 April 2014

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.

epilepsy protection; going high tech

for those who arent regular readers,am life long tonic clonic and abscence epileptic-severely and sometimes status epilepticus though the TC seizures get worse around warmer months and settle down better during cooler months as the heat is a big stress causer of mine.
the social services/NHS learning [USA=intelectual] disability team had learned that there had been a number of seizures being missed by waking night staff because they were busy sleeping on the job or had their music ear phones in,so in one week they had arranged a visit from the epilepsy team with a special epilepsy sensor mat that goes under the mattress of the bed and detects seizures-there is a digital unit which is plugged in in the lounge so waking night staff can hear an alarm if it detects epilepsy activity,here is a photo of it on the bed-
am greatful to the LD team,one in particular who secretly fancies harold bishop from neighbours, for getting it sorted out so quickly as it is a big worry for self when have come out of seizures and no one is there to help as theyre busy in the lounge snoring or with their ear phones in.
the epilepsy mat and unit costs hundreds of pounds so am greatful for getting it on NHS.

am also been given a epilepsy sensor bracelet which does the same sort of thing as the matt,but theyre out of stock at the moment.