Tuesday, 29 June 2010

social worker visit

social worker came today.
am not very good with social worker visits,as in the past [before living here] head had attached the visit with being told am being moved to a new home everytime.
it also attached social workers to being refused needed funding-whether that was an extra days funding for NAS support when was back living at home with parents temperarily, or getting the sound proofing installed in bedroom here...head has just not built a good picture of social workers even though they are mostly nice people,and do just want to help others.

today,it was building and building,coud not cope with not knowing what social worker was going to say,so ended up head banging on the hand rail of own toilet,had cut self earlier because of it but that piece of metal had been removed,dont know why exactly had been head banging [whether was trying to communicate whatever,get pressure,
distract etc], but am also known to do it to knock self out to avoid a very bad situation,KO didnt happen but ended up with a bruised swolen and bloody head.

was communicating via text [coudnt be bothered with TTS,just used notepad] thankfully social worker was very nice,and calmed head down,but the meeting was affecting self alot,kept expecting someone to say cant have that,dont need it etc as its what had always experienced before.

social worker has to be the main view with anything health related or stuff that costs alot,so there was a few things on the list that have been after for years [well most of them].

-one was a wheelchair,for when paralysed from waist down through seizures and meltdowns.
-one was the crelling harness,to use in the cars/minibus,as am not able to use a seatbelt fully due to sensory reasons and need restraining into one place incase of meltdowns,seizures,tics etc.
-one was a padded safe cabin from ROMPA,cant even remember what its called exactly,but it near the back of the ROMPA catelogue,its orange in that [want pale blue], it has those sensory star lights built into the roof of it,staff always say its expensive so it had to be asked for.

not sure if there was anything else,he is going to start assessment for them all by OT.

found it very difficult,as head had gone completely blank as it always does in meetings,and was being asked about why was still not eating,or having washes with cloth and not baby wipes-it felt like was being forced into doing things that am really not ready for,not good felt very bad.

was worn out at the end of it,but ticcing very strongly,tried to hold them in as much as possible as they hurt ears [the shouting ones] and can look like bad behavior [punching/kicking ones].

everyone including social worker has tried to get a visit to a and e or doctor at the least today,because of the head injury,but didnt see how it was different to any other time,and am not putting self through a doctor visit for something thatll be gone in a bit [concussion again].

earlier today as well,was made to feel like was restricting the others from being able to go on the beach day out again,and how shoud make self go as its not fair on them,am really fed up of this-why is it people
can not understand why am refusing to go into a tight,shut off space with someone else who screams,which can happen randomly?
why is it ok,if am left getting fucked up all the way over thinking when the screaming is going to happen,smashing head off the minibus,having a seizure and losing use of legs so woudnt be able to do anything but stay in the mini bus thinking about bad things,just so the other service user/resident can go?
why shoud anyone put themselves through that for someone else to have fun?
dont care if it is seen as selfish anymore,but am able to fuck self up enough on own without anyone else helping.

as soon as she gave up trying to encourage to go,she said something long on why hes still going to go anyway with the other resident,as if am doing this to control other people.

then was told by someone else have got selective hearing though not in a bad way [whatever that means],really wish people woud understand that just because a sound can affect more on one day than another,it doesnt mean its selective hearing.
when noises build up without the overload given time to recover,it means am more sensitive to noises,and can include ones woudnt usually be sensitive to.
the seizures also affect the noise,as they are suposed tobe affecting the part of the brain that controls sensory understanding.
not only that,when tinnitus is going,it affects noise tolerance to.
wish people woud understand better,instead of thinking its selective,this always brings back bad memories of a past where was treated like shit for having what they called selective hearing.

Monday, 28 June 2010

shaving tiem for biscuit

here she is pictured recently in hot weather,the sheat next to her head is a bed sheat cross anti fly sheet to spread over her and the chair as she is very noise sensitive,and the flies seem to have a thing about going straight for her all the time.

she was extremely hot in the sun at the weekend,so much that she was lying flat squashed to the ground,all her legs spread out,her tiredness level was very high more than usual,and she was not coping.
so have decided to get her clipped.

got up the details of the lady that had come come to visit sam and give her reiki when she had cancer,she is an ex RSPCA officer and her main job at her shop is clipping cats and dogs,so shes either going to do a home visit or hes going to bring biscuit there,am going to pay for it-he woud never bother doing such a thing,for anything that isnt to do with serious illness/injury.

the thing is,if they ever start diagnosing autism in cats like they do with other human stuff already [OCD,epilepsy,dementia...], biscuit is probably first in line,as she is an autistic cat,everyone says it.
no idea how they will manage getting her clipped due to her sensory issues with touch and sound.
dad can only groom her with a american brush designed for grooming hating kitties,called the kong zoom groom,as it doesnt give her light pressure,it massages her,but she will only allow it around her sides and back and tail for so long,she wont even allow her belly fur to be touched,or her neck ruff thingy.

cant use fans to cool her,even mild kitty fans as she hates the feeling of wind on her [doesnt mind allowing it to come out of her though].
so she definitely needs shaving,it means she wont be able to use her fluff as an excuse for her flab [poor cat is on diet biscuits already].

Thursday, 24 June 2010

riding stuff

was at horse riding [usual RDA place] this week again,on jas as usual.
due to a meltdown,and possiblyl a mild seizure [no idea,as went out of it quickly],had gone to sleep quickly afterwards,and a whole team at the school were having to hold self on,as woud have fell off otherwise.
legs had become partly paralysed,but managed to recover enough to carry on lesson,am always on lead rein due to risks-such as these,so it didnt matter that legs were gone,have developed a awesome skill anyway known as seat aids,which are especially good for those with limited leg use,as the horse can be controlled through the seat,am able to start/stop jasmine through this.
they were so much more helpful than usual,and really do not want to leave if can expect this understanding, and help when needed.
am still going to go to the new riding school,but just never even dare think of leaving current school in future,but do need access to a indoor riding school as well,due to the sensory issues have got.
have gotten a new school polo top as well [will get picture of it tomorrow].

went for another visit to the new riding school this week,had a look in the indoor arena today,and the cafe where are able to watch the indoor riding from.
they sell a lot of things with pictures of their horses on,so straigt away bought one of shannon [thats the horse will be riding when go there,
will get a picture of the magnet photo tomorrow],the indoor school had a load of birds flying about in and a black cat stalking them.

for a mainstream school they definitely are accepting,though one staff did have some sort of thingy,over the problem with dogs barking,as they said the farm dogs are security and cant be locked away-turns out they dont bark randomly anyway,only buster does but his owner wasnt there that day.

complaint for the week.

am getting really fed up with other people.

even though like the people in question alot,cannot understand how am able to know more about them about certain stuff.

to this person-am not even disabled and only have some issues here and there,because.... am not physically disabled [even though besides everything else-have got full todds paralysis,which happens after seizures,severe sensory overload and meltdowns],mentioned to them about the fact that DLA is our registry of proof for disability, proving are disabled if claim it,and they said only physical disabled people experience real disability problems.
next,pointed out the fact am on life/indefinite HRM/HRC [though dont get care due to being in residential, but that is still on award],is proof of the needs have got through severe disability,they then said that the residents am living with dont even get that as far as they know,and then said if anything-they shoud be getting the HRM/HRC and self shoud be on lower,as 'am very able',according to them.
am so fed up of people taking better understanding [than those that live with] and better awareness of self,as their 'proof' that am in need of less help,just because we are all different and some are more severe than others.

the same person also said [after was feeling shit from a tonic clonic yesterday,and today straight after having cut leg up badly during a pre seizure aura,and ticcing constantly]-that they arent even real seizures,as one of the other residents [kids] 'has it severe' and needs injections always ready,she then said she fainted once a while ago,and
asked if thought they were fainting instead?
right then.....the neurologists are just lying because am not as severe in seizures as others,that explains it,guess the fact am on the highest and max dose of tegretol retard doesnt explain how bad they can be then,and the fact they're not as effective anymore.

the same person also arranged a trip out next week,but said both other residents had to go to,after pointing out the obvious,that his screaming sets self off leading to a missed trip for self as well as a lot of damage to self,and that was really not comfortable traveling with him though like going out with the other resident often,they said was being selfish and by not agreeing to go with him am not letting him have the chance.
let someone know about this today as did not find that comfortable at all,to self it said they were seeing the severe noise difficulties have got as nothing,and easy to get over by choice.
have not got any problem with living with him,and think he is a very nice person,but being in a very small shut off area with him such as a car or minibus,when have got big problems with noise is impossible.
even if he doesnt scream,am still building up so much inside thinking hes going to do it any moment,that will be easily triggered by anything or ticcing alot,or missed out on a trip out.

they always say am getting out the most more than anyone as well, which may or may not be true but it always feels like am being made to feel as if stopping the resident that screams from getting out due to being unable to go out with him,and the other resident cant go out unless enough staff are on as he needs two to one all the time when out,am often asking for him to come along when possible as can get along with him easy,so do try to think of others as well.
it also doesnt help that the resident that screams,doesnt like going out,unless a reward is involved as hes not so much into the getting out side like self.

getting out actually helps self in many ways,it helps to distract head which am having a lot of problems with,due to seizure auras,a shit diet [that shoud read no diet,as am not eating as normal and not even able to take the ensures right now and it affects seizures,MH which do not have problems with normally and behavior]-getting out,and the sensory side to the movement of being in the car all helps self,and it also can help lessen chance of a seizure whereas the others at least are able to get out and go for walks or in the garden a lot more,am not able to go for walks and rarely able to go in the garden because of a nearby place that has noise as part of their job.

this probably sounds very selfish or being seen as very hard on self,but am just getting out what is in head as am so fed up of being misjudged all the time.
have been in the disability community for many years,and always try to understand a person instead of judging them badly or ignorantly where possible,so why is it people without disabilities who work with us can have less an understanding of disabilities than us?

disability is a huge spectrum,and covers so many different types,it also split into different meanings-there is social or medical.
a person with learning disabilities,developmental disabilities,mental illness disabilities etc,can have alot more disability than someone with basic physical disability-because non physical conditions are often difficult to adapt for and do not get the same acceptance under the DDA as physical impairment,with physical disability-it is often a lot clearer as there are so many aids that help with the physical side, and once using these aids-it can get rid of the disability though not always the discrimination they get.

now this isnt the end to this complaint,the person-though very nice and genuine,also is easily offended.
am constantly being lectured at for offending them,when have got no idea what they are on about,have had it a few times today already and am so fed up,am feeling like just not interacting with anyone at all-anymore,if it means everything am doing will offend.
a lot of this is even over echolalia that am not even aware of the meaning of-as that part is not processed to self,she thinks am making fun of her if copying,and the last time this happened today,was over blowing against arm so it made a farting sound,so got a lecture on how it offended her,but she then said she wants self to think of how others feel,and it didnt actually offend her it just coud offend someone?
am feeling extremely confused from all the offended lectures have had off her recently as have no idea what they are on about,as well as being judged as offensive,when woud never choose to be-unless someone is directly doing it to self.so yeah,fuck this anyway,really dont have the mental energy right now for coping with this.

am so glad have got a keyworker who understands self more than anyone,doesnt just assume anything,and is really fair and unbiased unlike others who can take their views from others rather than fact.
not saying think aynone here are bad,but she is the only person here besides one other staff that feel able to speak to about anything, and get facts and unbiased views heard,-used to try with other people but instantly got judged as not being to able to have the differences or issues was saying,am already struggle to ask for help for different reasons related to having autism,but also struggle due to the past have had in residential care where was neglected as staff automatically said was lazy and not in need of the help due to being able to work a computer,and it makes it very very painful to actually ask for help as it always feels they will say the same if they are not able to even look past one side of self.
it means am more likely to struggle in silence to do something such as get boots off,instead of asking if someone coud just undoe them.
not that am bothered about actually having help,just being faced with
the same old ignorance.

really wish people coud see others as they are,and not judge on stupid bloody stereotypes,as most of us do not fit them.
thats it for now.

Friday, 18 June 2010

new stuff

more new stuff going on,this time its a sat nav and new nappies.

have finally bought a sat nav for the car am still waiting for off motability/citroen-that is still being sorted,just waiting on a number as the organisation and apointee need this to finish it off.

got the sat nav off ebay,like most stuff now days,its a ex display tom tom XL,has a few small scratches/chips but dont care as its otherwise awesome.
its for staff to use,as one person especially is rubbish with directions but coudnt have a car of own with just any old sat nav now,it was a choice of getting a brand new basic/classic tom tom with smaller screen,or this better one.

as for the nappies,have changed again,though dont think will be sticking with them for another pack.
got a big pack of tena flexs today,these are velcro taped,which lasts longer than the tape of the tena slip,but theyre more confusing.
need help with normal taped ones already,but thats just with putting them on-these are more difficult, not sure if will stay on these long or if will just keep them as emergencies,as have run out almost of the slips.
coudnt believe found nappies for heavier control in the chemist though [a lloyds],they can order them in within the same day if theyre at their warehouse.

Wednesday, 16 June 2010

new riding school

have finally started the long change,to a new riding school,only as of today in fact.

last week we were told they have brought in a new rule,where riders will have to pay for half of their lesson the week before,so that if they miss their lesson they will lose the money-staff asked them about the fairness of this,given they are a purely disabled riding school and things can change unpredictibly through disability,eg-in own case coud quite easily have had a meltdown or seizure before riding,which are both out of own control,they may be treating everyone equally by saying everyone has to do it,but what about those of us who are unpredictible through disability?
can understand how it affects them in costs,and how they are a charity,but dont agree with this at all.

they're also very unpredictible as well with how am treated every week,some weeks they are more helpful than others,as in.... one week they will have the barking dogs put away,make sure phone is off hook,no one is brushing the concrete etc-the next week they will be saying come riding next week instead when its not as noisy,not even a bit helpful.
am getting fed up of this treatment,and being made to feel like its fussyness rather than impairments through disability,as the yard owners son has classic autism as well,and he pretends to have sensory issues to get out of doing things he doesnt like so that means everyone else with autism is the same bla bla bla,same old shit that everyones heard before.

anyway,today a new riding school was sorted out,at least the start of the change,am not on rider terms with the place yet as have to build up a routine with everyone,the horses and the place first.
it is mainstream,not RDA-which am usually avoidant of because of the treatment and turn downs have had from mainstream RSs before,but this school is possibly the most accomodating one have ever been to from first experiences,however they do accomodate disabled riders in all forms.

the manager? owner? dont know who he was but he did a lot of stuff there,took us on a tour of the grounds today,and even though they admitted they had never had someone with sensory issues like this before [they do have someone else with autism there],they were very helpful about the yard dogs and put them away.
he even said which horse woud eventually be riding when start lessons,forgot to get a picture of her as was tranced by seeing all the new horses,but she is a brown/bay coloured cob with a white stripe on her face-she is called shannon.
she reminded straight away of jasmine,must have been the cobby belly.

there were a lot of kids there,because they get homeschooled in as well,it was so much quieter than the usual riding school am at-what a difference,dont understand it either because this one is mainstream and huge,the other is small and designed for disability in all forms [and it aint disabled people being the noisy ones there].

they have several indoor and several outdoor arenas,they have their own big horsey shop on the grounds,and they also have a pony club based there in their own large cabin,cant believe the amount of stuff at this place and its quieter than a disabled riding school.

they had loads of yard cats,had a long conversation with one-it went something like:
self: 'rowww'
black and white kitty: 'rowww'
self: 'rowww'
black and white kitty: 'rowww'
self: 'rowww'
he got lots of rubs of course,and buggered off for attention off someone else when we left.

am only hoping now they have bareback pads instead of saddles for use,and allow stirrupless riding,and if they dont have the pads-if they woud allow one being bought.

am not going to fully swap riding schools,it will be going between both
with one on one week and the other on the next week,as do not want to leave jasmine or the riding instructor but maybe that will eventually change when fully set into routine with this new place dont know.

had hoped to go robinsons [the large horsey shop near haydock race course] today,but was having multiple seizures in the back of the car, so we ended up being local driving around instead.
still had good time being out,got another frapachino-had one this morning as well,was a great treat.

Tuesday, 15 June 2010

swinging and cats

went to see the little madam [lottie] the other day.
the park bit of the farm is finally being set up,the fencing,special bouncy ground stuff has been laid down and the awesome swings have been built.

am not able to use normal swings,because of being unable to hold self up on them [usually tipping off it backwards,probably because find it very difficult to sense self/body],so think these swing seats for children or adults with disabilities is an awesome addon to any garden,wish it was our garden [only the kids side have got one because of the cost of the bouncy ground stuff] but whatever.
first got to try one of these out at a mencap day centre,but theirs were fully adapted for adults only-they were harnessed and padded,and at adult height off the ground.

was sat trying to swing on the ground and hold onto a frapachino at the same time,mostly impossible because the swings are at kiddie height.
then the little madam came running, she jumped up on knee partly and wanted a lift up-never known a lazier cat apart from biscuit,it must be a tortishell thing-she laid down straight away,purring,dribbling and sticking her crotch up at the camera,she likes gentle rocking-just as well as its all we coud manage at that height from the ground.

went to see her today again,and she was doing a lot of sunbathing, think we might have done some swinging again but cant remember.

am going to ask dad if can get one of these swings [a single set] put in at his garden to use at the weekend,as its huge and we only need the soft bouncy stuff at home/here because of health and safety rules, bet he will whinge about it wrecking his turf,will just show him the hand controls can get for it so feet dont have to be involved-any excuse.

Thursday, 3 June 2010

wendsday complaints

riding was a disaster again today.
we got there late again,but they were fine to still go ahead.
only thing is,its the school holidays and theres lots of children running around screaming,but they also had the dogs running wild barking as well,the noisy pet birds were in their cage outside for fresh air [cant have anything against that one],and were wildly brushing the ground with wire brushes.

its no ones fault,am like this but it doesnt make the pain and frustration of not carrying out routine [and what is both therapy and hobby] any better.
didnt even get to see jasmine.
we went to starbucks though afterwards,at least did not miss that.

another issue to speak of,why is it parking attendants in carparks are either one of the extremes-and not in between,as in why are they either so desperate to catch disabled bay users they will harass genuine users,and at the other end of it-why are some no where to be seen>?

the other day was at sainsburys,and we were waiting for usual space to come available in the disabled bay area,when had noticed there was no blue badge on the dashboard of the car we were waiting to take the space from,the owner was a speedy mother,with a young child, the disabled parking was completely rammed with cars,and disabled people were being turned away because of it,its unbelievable that people like this person who does not have a blue badge can think its ok to take already limited spaces from severely disabled people, the mother and child parking was at the opposite end,dont know if this is anything to do with it,the child was fully independant so did not need pushing/holding,how can people be so selfish and lazy?

have been told to mind own business,when pointing out those with no blue badges in other disabled bays,but shoudnt people be looking out for other disabled people,who woud otherwise be turned away from a place if they arent able to park there because some lazy bastard has taken a bay?

Wednesday, 2 June 2010

sensory plans

had got a new koosh ball today,an extra large one,which has the most awesome feeling,and is also scented very nicely,it certainly helped to cover up the smell of shit wafting in the window from the sewers boiling,photo we took of it here-

it has already become a solid favourite with everyone,got it from the website thenoveltywarehouse [a sensory toy website] but via ebay, only ordered it yesterday or day before.

next on the list we're looking at is a ball pool.
managers want to get the organisation to buy one for all of us to use [adults and children],as they dont think shoud bother spending own money on one of the specialist ones from ROMPA,as it will use up some of savings,but am not liking that idea much as it means itll get put in the childrens building,and we are not allowed in there if one or more is off school for any reason,or if they're in there/back from school,so dont think that woud be fair.

we dont have our own sensory room or any garden stuff other than a plain bench so am going to see about getting own ball pool instead for outside,am thinking of getting it on the cheap-buying a new big paddling/swimming pool off ebay or somewhere and filling it with the balls.

padding the bedroom floor is being looked at again,dont know how much of a possibility it is,as NAS said it woudnt work doing the entire floor.
still getting the padded cabin to go in the corner,cant wait for that as it has fibre optic stars inside.

have been using the rocker every day,all day and the bear hug vest every day from morning till night,and it is helping to be calmer,a picture of them in use-have got almost everyone addicted to the chair now,but will be damned if theyre getting hold of this bear hug vest,it comes back looking like a fur coat at the weekend due to biscuit being all over it.

woud buy almost everything else in that ROMPA catelogue,apart from the old people stuff at the back,and the music stuff.
just a pity they are aimed at organisations/sensory rooms/special schools etc,as am always being told theyre to expensive for everything have pointed out as wanting.

autistic hair cuts,the old fashioned way

it has never been clearer that am in need of a hair cut.anyone who knows how thick red hair can get even when short will know what am going on about.
add to that, the extreme sensory difficulties have got with electric/battery clippers [noise],and scissors [tactile],its not exactly easy getting a hair cut.
so enter the views of a few men who are from 'back in the day',the 'golden years',eg dad and a manager.
was told about manual clippers-ones that run on hand power only, no
electric or battery.
this had been unbelievable to self so had began checking them out on the internet.
the majority did not want manual clippers anymore due to electric ones taking over,so they stopped being sold in shops,and only to be seen on ebay as vintage used stuff.

had been looking through a robinsons or derby house catelogue one day,when came across a pair of WAHL manual clippers,coud not believe what was seeing!WAHL now sell what were originally designed for humans for noise sensitive horses,that being the reason they were in a horse catelogue.

so had to get a pair,others thought theyd be useless as they thought they were just designed for horses,but they were wrong,these are the old style human ones,coud never imagine someone having to clip a whole horse with such a short blade on it.
have not been able to give them a go yet,because stupidly....did not realise they require 'clipper oil',they only came today,and we may have some with the electric clippers but have got to wait till tomorrow at least to be removed of this heavy,scratchy stupid burden.
will post back on results.
for now [as long as they work],woud highly recommend getting a pair of these clippers,for anyone who is to noise sensitive and/or hyperacutic for the electric/battery ones,these woud be extremely useful to autistic individuals.
will find them here:
they're also at robinsons:
if are after a pair,choose whichever shop as theyre both highly reliable.

took a photo of them tonight [though they have to be kept locked away],they work like scissors-