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.

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].

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.

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.