Friday, 10 December 2010

update on neurologist visit

A update to the hellish neurologist visit have posted about at an earlier date:

-Have been sent an apology by him for going home,he said he hadnt realised we were in the hospital as the receptionists hadnt bothered to pass it on.

-the hospital finally seem to be understanding how difficult it is accessing the hospital-the neuro has offered to do a home visit,and said after that appointment,wont need to go to the epilepsy clinic as staff will be able to go on behalf.

Laptops and dirty minds

needed something good to look forward to,yesterdays purchase was a good distraction-ordered an acer ferrari one ultra slim laptop [size of a netbook, power of a good non gamer laptop,with awesome colour and the horse badge],expecting delivery tomorrow hopefully all going well seeing as paypal was being DDoSed like crazy yesterday.

Today was pyschologist day [see her every week at home],she is very funny and nice.
She is trying to help with loads of issues, and she writes everything down.

she was asking the staff how to spell another staffs name who had been on last week to find out about a incident off her,and she said to pysch " starts with...*thinking*...S..H......*thinking*" whilst she was in her own world [as they say about us] being of the helpful type had quickly said to the pysch "I..T" to finish off the word,and she writes it down whilst looking at the staff for approval,not realising what it said.
the staff nodded her head and said "yeah,thats it",so the pysch looks down to carry on writing but then realised what she had written.

both of them said they hadnt had enough sleep,and funnily enough at the same time was being shown PECS based stuff on why am lacking sleep and what happens through lack of sleep,didnt realise was going to get a live demonstration as well,value for money!

speaking of swearing,either this week or the last,we were making christmas decorations,to be put up on this coming monday and they were big letters that had been cut out to spell something or other [no idea what] -was given the job of doing all the arty stuff on the letters.
once they were done and dry,the finger unfortunately slipped a few times and before we knew it had spelt out 'shit' on the table with the letters-our manager seen it and said it needs rearranging incase someone sees it,so he swaps the I for an A,to make 'shat', [to use in an example if have never heard this word before-"biscuit has shat over the side of the litter tray again"],he never noticed until it was pointed out.

Friday, 3 December 2010

a winters walk

every friday have got a routine of going out for a walk in the village, with some 'goggy' friends [owned by one staff,and his mates unfortunately], and even though it was severely icy,the attitude was-fuck it why not, anyway.
so we went for our walk,prepared with walking stick things of course because of how dodgy the ice was,they dont get gritted or anything like that there,its the real country.

we went along with others we know who took some photos of us for the ASDAN towards independance course am doing- unfortunately cant show it in full as it has one of the staff on but it looks very christmasy:
-the chocolate labrador is ralph,the smaller black dog is ralphs brother called hugo-who sometimes visits,and the other black dog is rocky.
rocky is a rotweiler X labrador,but has none of the rottweiler nasty in him,he is a super friendly dog with doggy ADHD who also thinks even cows and horses are dogs,and attempts to befriend them [video of this coming up shortly].
-the only true woofer of the group is hugo,but he wasnt to bad today so had a good walk with him.

it wasnt long before we came across our equine friends along the trail,
we know who owns them just not their names,theres a shetland and young skewbald cob,rocky is naughty-he teases them by running around the field and gets them playing chase-though despite that they are friends,heres a photo from today as well with the ponies and ralph:

after we finished walking the dogs,we went for the usual end part of the routine-a coffee,in the best tea rooms in the whole of the UK.
lounged with the owners cats harvey and nicks [her kittehs] and maisy-a awesome cocker spaniel X puppy with an identity crisis,she thinks she is a cat.

having a difficult time at the moment,it helped a lot getting out.

progress with the helmet

the wait for an extremely long awaited aid [though not all the NHSs fault] is finally coming to an end!
was due to go to hospital again tomorow to get head measured for the padded helmet,but they had contacted earlier this week to say dont have to come staff can just measure with a tape measure instead.

have had head measured before in robinsons when buying jockey skulls and on the current skull/helmet am using [pro II] its got the size sticker on there but everyone thinks itll be different because its a riding thing.

still having those stupid funding issues at the moment,going to kick this bloody councils arses in if they dont sort it out as they are through their choice saying that have to be housebound and dont need to go out the door,by having removed the little outdoors funding that had.
fucking conservatives,thanks to not getting out the major depressive disorder is getting worse again,though was the last one to know-only the pysch noticed today.
stuck inside,fuck all to do,what person woudnt go crazy seeing the same walls of their bedroom, getting no mental/hands on stimulation and exercise? plus have lost so much tolerance in terms of sensory stuff since being severely restricted by this funding loss,have lost all tolerance had ever had for outdoors.
not their fault in the slightest but its unbelievable that am living with others who due to the borough they are originaly from they have no problems with this funding,this complete lack of equality of fairness in care is disablist and very wrong.

think will be writing a letter to MPs about this.

Saturday, 13 November 2010

going into hospital and coming out worse than went in?

on friday it was the usual epilepsy review at hope hospital,a big neurology specialist hospital in a shithole called salford.

we were supposed to have been there on time,but had not been told about the lack of disabled parking,with most spaces available being taken up by non blue badged cars.

we were driving around for ages looking for a space,and found one eventually near by.
the hospital had told staff all week a sound proofed room was sorted for the appointment,and to phone them when we were going to set off so the waiting areas in neuro department coud be kept as quiet and empty as possible.
in reality,the noise hit as soon as we got out,lots of building work going on on their new buildings.
going in the door is hard enough as they have fans on which sound like wind tunnels.
though was being comfortingly restrained on each side by manager and a staff-who both make self feel safe and secure,was still hitting out though hopefully had aimed it at self.

when we got into the main general reception bit,it was rammed with people,have been a user of that hospital since a toddler and can never remember having heard it like that before-it was extremely noisy and overloading,one of the staff who went to sign in and to beg for a quiet room whilst we were in reception was told there werent any rooms avilable and it was required now that everyone has to sign in that area first before signing into the unit are having an appointment in-was later told the cue here was huge,adding more time on the waiting,they eventually told staff it was to late-that the neurologist had gone home,but it hadnt of mattered anyway as had end up kicking off but quickly shut down sue to being so severely overloaded.

apparently,a older lady staff of the hospital who was very nice had tried to help in every way possible,she grabbed a wheelchair [due to being unconcious and likely to have todds paralysis afterwards],and was put into it by staff,and brought to a quiet room in the nearby cancer unit.

when had recovered and woken up,it was clear was not going to be able to walk,so it was decided to go home,and was wheeled out by own staff.

its a long while since have had such a bad experience of hospital, some of them are great people and go above their job to help whilst others coudnt care,they woudnt allow us to go through short cuts to bypass the overloading areas and corridors like other hospitals do.
am already hateful of hospitals,and this is just going to make it so much worse,trafford general,the walton neuro institute and the nightingale building at wythenshawe hospital shoud get awards for how they accomodate autism needs,but there are only specific staff of hope hospital woud personally give them to.

anyways,enough whinging,off to give this bugger:her anti pyschotic medication [some rubs and head scratches].

theres a rat in the house

unfortunately,have not gotten any pet rats [not for the past few years any way].
no,this is a RAT of a different kind,its sneaky,quick and easy going [much like the real ones] but this RAT is on the computer,and provides some great entertainment if happen to have computer challenged relatives or others.

RAT stands for remote administration tool,its a piece of software that once installed on a computer,can by controlled and used exactly as it shows on their screen-from anywhere in the world,and if theres anyone using it the person remote administrating can see what theyre doing.
so,today had installed 'logmein' on dads computer,moving the mouse thingy around and so on.
showed mum how it worked,and she said its a good thing to have as he supposedly spends so long on there he must be looking up pictures of naked women,no-he just listens to tipperary fm and downloads lots of crappy 'bogger' music off amazon.
-a full size screenshot of it here in action [click on it to see full view, he knows am posting it here-just showed him-he wanted everything identifyable to his computer removed-due to being paranoid from having had his bank account wiped out from online buying before]:

its pretty awesome software,not in a hacker sense which is what many people use RATs for,but for connecting to own computer when somewhere else and transfering files easily enough or playing music from the hard drive of the host computer.
wish had known about it when had had a PC RAID set up [multiple hard drives,so coud have transfered a lot of non replaceable photos had stored PCs in the shed allowing them to go damn and ruin].

Wednesday, 10 November 2010

horse business

had a good day once again with jas.
jas,for once was actually going over jumps and not ploughing through them like she usually does-the sun was shining for once,didnt get to ride due to the sensory nightmare last week [rain].
she had been such a good madam that we got her a bucket of her favourite horse nuts,was running with the bucket back to her stable in front and poor nat was being dragged along in the dash for food.

have uploaded the jumping video to youtube:

have been told have been given an award for riding due to how much better have gotten,and theyre presenting them at christmas,its pretty awesome stuff,had even been recommended for the paras and specials [paralympics and special olympics] in horse riding if sensory side ever improves.

going to visit the usual pro show jumpers yard again hopefully next week with the owner of the residential organisation am under,as shes friends with them-we did a trade sort of thing,if woud go back on the ensures and drink at least one in the morning and one at night- for a week or so,woud be taken to the yard,and also have a riding lesson with her to look forward to hopefully and a trip to a racing yard to.

the adventures of lottie

its not often that get to visit lottie at the farm,thanks to the current fund cutting scumbaggery of the council which am having to go through at the moment,but today had been able to go visit the madam and she must have thought it was christmas when she saw some boxes of her favourite kitteh food-whiskers being taken out,she doesnt usually put all the effort in coming over to greet us:
here she is lining up for a big jump,as she is a food lover and cant wait for the door to be fully open.

this is often the end we usually see anyway,when she shoves it in our faces:

a post dinner/pre barf hug for lottie,dont get many pictures of her with self at all [apart from one],and she doesnt like doing front hugs like this usualy,shes more of a bear hug cat,like self.
we filled her water dish up,and left her to rest her overworked belly, have found out she has another boyfriend on the go now,and dont even know his name-hes one of the semi ferrals,looks like her other boyfriend kai.
he comes in and steals her food from under her nose and she lets him.
all in a days work for lottie.

Wednesday, 27 October 2010


am still at mums till sunday,but aunty/uncle and cousins went back early this morning,its been a nice experience.
some people have family over all the time and whinge about them,mum does that but no one listens to her thankfully.

we all went to blackpool on sunday afternoon,sister and her boyfriend came along to.
we were at the complete opposite end to where all the rides and stuff are,it was so busy there werent any disabled parking spots free at all anywhere [something which became a larger issue later on].

we had walked all the way along the beach,then all those greedy bastards wanted to stop and stuff themselves,so was sitting on the beach,with sister and dad whilst the rest went and ordered stuff [sorry the family arent really greedy bastards theyre just the opposite of self with food].

took this as a chance to get some photos of the beach before it got to dark,unfortunately the camcorder has no flash so didnt to many good ones but will stick up some super awesome ones that uncle took with his new d-SLR camera-might take him a few years to organise it and work out how to copy and paste to his computer,seriously tempted to get a digi SLR now.

as soon as it got dark,and the infamous 'blackpool lights' came on,it was a very different scene to how it had just been,was suddenly left coping with booming music and PA systems going off from all the bingo halls/arcades,stalls and shops,the lights were flashing at the pace of strobe lighting-but was determined to buy something from blackpool as always have done,had fancied an airgun but dad was having none of it.
was also trying to buy a stick of rock for each staff [which unfortunately didnt manage to do so because of the music].

was getting quite agressive from the overload and attacking out so was physically restrained on both arms by sister and dad,the thing that ended up buying in the end was a cat tshirt,
but had paid a heavy price in having routine-being forced into a never ending squealing moshpit of kids with more flashing lights than an illegal rave-a tonic clonic seizure.

the car was parked very far away,and the only drivers in our group had all buggered off with the kids to the pleasure beach [where the rides are] so was left to be dragged back to the car by sister and dad.
still...being a stubborn git with routine has it good points,got some awesome blackpool donuts out of it as well as the kitty tshirt,and got to laugh at everyone else who came along to who did not stop moaning-they all brought just a jumper,no gloves or anything,had personally come prepared with the deep pressure vest,a coat,a heavy hoody,a hat and gloves-what pillock woud go to a UK beach and think itll be warm with the winter wind blowing on the sea.

its been great having aunty,uncle and cousins over-theyre planning to come over for the birth of tiddles next year [what have called sisters unborn baby,due march-though she isnt liking the name somehow],looking forward to it already.

Saturday, 23 October 2010

family stuff

got relatives due in any moment now,from tallaght in dublin,staying at mums for a week.
-an uncle,aunty and cousins-one just turned adult age with classic autism and teenage cousin has learning disability.
rarely ever see any relatives as theyre all mostly in other countries [ireland,new zealand and canada] and cannot use planes or ships.
have bought aunty and uncle a bunch of flowers and cousins a big tub of chocolates as presents,was going to get a bottle of bollinger,moet or krug for uncle/aunty but dad mistakenly told staff she doesnt drink champagne.
got loads of stuff planned with them.

Thursday, 21 October 2010

discovering life in a different way

havent posted on here for a while due to a very accute problem that had become a very difficult journey mentally.

since last year,have been developing worsening mental health symptoms which had all been put down to the non existant diet [no eating at all for almost a year now] and refusal to drink most of the ensure [refusing due to the company changing the bottle and flavour which is now unstomachable] but it had all started before had stopped eating completely.

since early last year or possibly even earlier,have been severely depressed without realising because of the level of difficulty have got with understanding feelings and missing some, had only recognised it when it got to the point was suicidal but it went so much further and deeper than that,including developing pyschosis where had ended up attacking staff whilst having some very accute episodes of it.

people had thought it was past problems [like with the past residential homes have been in,and much older history] causing the issues,and was refused a chance to find out about medication because was told no medication woud help,but in recent weeks had been suicidal every day,constant suicidal thoughts,cutting every day, barely moved out of bed or own bathroom [where hide away in],and was also accutely paranoid,paranoid delusional and halucinating [tactile and visual] ,was unscrewing door handles with a flat knife had managed to steal as felt in serious danger from staff [delusion]- was attacking them and baracading self in bedroom and smashing the place up,and so much more fucked up stuff.

every day was wanting to disappear so badly.
to add to it all,those bastards at the council had not even gone through with what they had promised,as we have to have seperate funding for getting outdoor time-to pay for extra staff,was promised the funding but they had turned around and gone back on it,every other resident has the funding as they come from different boroughs,
and am expected to stay in the building everyday seeing the same walls and ceiling with nothing at all to do inside but sit and think, whilst everyone else has priority and can get out and do activities-am only taken out if theres any spare time left over.
the bastards had refused to pay for the extra single pane of glass without going halves with the organisation am with,and they cheated self out of this funding!
am not putting up with it any longer and have typed a letter for social worker,and want to contact MP as well,as the managers have been fighting for this small amount of funding and still get the same answer.

so recently,was at lowest point,had managed to finally convince staff that need to see GP as was so fed up of this-had actually gone with sister in the end to the appointment,she heard every detail off sister and did not judge like others have done,was diagnosed with severe major depressive disorder with pyschosis,and said the pyschosis had probably developed through the depression being left untreated.
she said the only action possible is medication and was prescribed a quick acting SSRI that was compatible with all the meds am on- a maximum doseage of cymbalta.

was refered to the LD pyschiatrist by own LD pyschologist,as the GP said pyschosis is to specialist an area for her to treat-so need to get meds via the pyschiatrist,appointment shoud be in a month have been told.

the cymbalta has been life changing in differing ways-am becoming like old self again,the suicidal obsessive thoughts have disappeared and havent attempted suicide,and it has completely removed the cutting-have not cut once since the drug had kicked in-which has been a way of coping since early adult hood [infant age if include cutting with fingernails and teeth] ,and its also completely stopped the carotid strangling,staff say they can see the change to.
the pyschosis hasnt changed but had never realised just how much the depression had taken over life.

have got depressive history that can trace back to teenage years,when had taken a box full of co codomols,but as was not able to tell anyone nor wanted to,it didnt get found out-not even the puke up the wall with stomach lining and partly disolved pills were noticed by mum when she cleaned it up,only sister really knows and understands.

people think only aspies have depression but from own experience, and a number of other classic autists have lived/live with,we are not immune to it and people shoud always look out for it in classic autists as it isnt as easy for us to understand or communicate,
its usually always put down to challenging behavior and we are punished severely when we may already feel severely punished by our own heads.

Sunday, 12 September 2010

motability car at last [slight update]

finally got it at last!
it had to be changed from metalic blue to metalic red in the end,as citroen said they didnt have any more blue for months,but had finally got the car on friday.

its a citroen nemo multispace,and is huge in
side-looks smaller on the outside than it is on the inside!
its an awesome smooth ride,a very quiet car,easy to get in and out of.
the seats have modern fabric on them,and being a tall backseat only passenger can say have never been in a more comfortable car-huge leg/head room.the driving staff say exactly the same thing as well
as its got an arm rest for that seat.
the floor isnt carpeted,its plasticy,rubbery sort of which is great as it means am able to help clean it instead of doing what everyone else does and taking it to cleaners.

still waiting for an OT visit to get the crelling harness for the car sorted out,as it has to go through the
m,CQC [the police of uk residential centres/homes] treat the crelling harness as physical restraint and have to get it written down by the OT as a need,so CQC cant complain,otherwise they woud have to be informed everytime it was used in the same way they already have to everytime regular restraint is used.
the only real issue have got with it is the radio,it automatically turns on everytime the engines switched on,a lot of people dont notice radio noise,really need to find a way to keep it turned off without pulling it out.
was given a boquet of flowers along with the car by the citroen garage,which was very nice as not many shops
woud do that,the colours are very nice to look at.

have only got a few photos of it but they identify home to much,and because have gotten into a lot of trouble with photos [though no idea what for],will only stick this one on for now,until can get better ones tomorrow....yea its a shit
looking one of the inside,but will edit some better ones in tomorrow.

Some more photos of the car,finally worthwhile to show relatives as well,mum was wanting to put on her good trousers to come out and see it when was dropped off at the weekend,cant take them [parents] anywhere.

have got a thing about the patterns on wheels,and become instantly tranced by them,so took a photo of the citroens:
theyre a bit shit and plasticy,as far as these things go,they are just wheel trims not alloy wheels,had wanted to get some alloys added on as well,but everyone says they are to expensive and with this being on motorbility there may be some issues over replacing wheels like that as its on contract.

have found some awesome looking alloys,very nice patterns will just make do with looking at all the alloy patterns on the bentleys/mercs/jags or whatever in the sainsburys car park for now.

teeth and other stuff

havent been on since july,it doesnt seem good that cant remember anything apart from this week.

this week finally had to part from an old friend for good.
was in hospital for another round of day surgery again,though this time there wasnt any root canal as far as can remember,had to have first ever tooth removed [and have some fillings done].

the disability dentist that have,was awesome as always and came to visit a few times to discuss what was going to happen,staff had gotten film of the all the routes woud be doing inside the hospital on the camcorder which always helps.
the learning disability nurse from the hospital had come to visit to go through everything,as well to bring a pecs schedule of the visit,and to drop some equipment off so coud get used to them again.
was not feeling very well about it,partly because of uprooting to hospital for the day,but also because had never had a tooth out,and having a severe nerve condition which is always triggered by dental work.

had gone in the minibus with staffs that felt very safe with,and brought quilt and other things to try and feel as at home as possible,luckily was on the top of the op list so it was so early it was when all the kids were being forced out their houses and going to school.
it also meant was well out of it as hadnt slept the night before,which in some ways had helped as did not have a lot of power to be triggered,and slept more than head banged or ticced.

was let in the back way to the ward,and into the same side room that always go in,was also looked after by same nurse that was looked after last time,which was awesome!

one thing that had kept self going,was thinking about when biscuit got some teeth out,she had a few out-if a big wuss of a cat can cope with that then so can an adult.
we all walked down to the room where they do the injection,was very glad they didnt do any of the BP testing till was out.
they had quickly put the canula in hand no messing with putting it in like what usually happens,then they shot some tiny bottles of clear liquid through it,then a syringe full of white liquid,then like that was coming around looking up to staff and nurses,was told was in recovery,then brought back to the side room,felt well out of it.
took ages to come around from it this time,everytime kept getting a bit of strength was just sent back to sleep again,was given morning meds as soon as possible as was not allowed to drink redbull with them before being put to sleep.
had never tasted anything as sickening as redbull and a mouthful of blood,jesus-coud not get rid of that taste,disgusting!!
then after waking up again, for some reason felt like was burning up-extreme,had never had this after a GA before.

was supported over to the chairs,where just rolled over to sleep again-burning up and feeling sick from temperature-staffs and nurses all said they had actually felt quite cold so it was obviously self just being weird.
the nurse got hold of a fan which helped self to cool better,and come back to normal better-that was a very weird experience.
the next day,the dentist rang to see how was doing,she is a very nice person all the staff are at the hospital-am making them a hand made thanks card for all the help they did.

that was wendsday-the pain was quite bad as it had set off the stupid facial nerve,felt like ripping off face it was that bad.
mouth is covered in ulcers,throat is scarred from having the tube down [a usual side effect of GAs for self] which was probably the worst pain,was also dribbling constantly on one side from the local anaesthetic still having an effect-dont know where it all came from.

today is saturday,and its only just feeling a bit better now,but the tooth area has got a bit worse,sisters boyfriend [a dentist] thinks from what have told him over msn it might be infected or 'drysocket' developing,well fuckthat.

in a few months theyre putting a implant tooth in [after it heals],they have to screw that into the jaw,am not allowed the clip on ones because of high risk from head banging/punching and seizures,as they said this woud break all the teeth it was attached to.

-tooth stuff out the way..................have been given some very weird news,am going to be an aunty,as was told by sister this week she is having a baby [due march next year] ,saw her first scan,looks like a proper baby and everything but everyone is saying its not bigger than a hand right now-actually think will like this aunty thing when it comes out.
am planning on spoiling it,maybe get it a little toy every week,and buy it some clothes for when its born.

Wednesday, 28 July 2010

wendsday again

went to the new riding school today.
slowly starting to get used to everything there,though not ready for riding there yet.

walked around the indoor arena with staff,the riding instructor and ozzy,it was very busy with kids in the joined cafe as its unfortunately the school holidays.
ordered the libra bareback pad today,to use whilst riding ozzy.

am not seizuring badly every day anymore,as the anti bs stopped the illness that had probably been helping to make them worse.

have also just ordered some PECS software,its nearly impossible to get hold of the board maker disc as its shared out between so many people [even though it also needs installing board maker wont work without a disc in,probably anti piracy thing-not like most people who have it are likely to be sticking it on bit torrent any time soon].

also on plans,is some new youtube videos.....
the speech therapist came recently, and mentioned she had seen the old makaton video that had made years ago with support staff-and have been encouraged on to make more,plus some on PECS as well [thanks if are reading this].
so am going to get back into it again,and have got good ideas for the videos.

hopefully very soon,am getting a webcam/CCTV-IP? camera setup in lotties mannor at the farm,so will be able to watch her from anywhere in a non stalker way,it will allow us to see how many boyfriends she has got stealing her food as well.
woud be awesome if we coud have one in all the main animal areas, to see what they get up to when people arent there,as they all go crazy when people arrive.

finally,am hoping to get a specialist bed,as current one is knackered and not safe to use,was told the ones we had been looking at [kinderkeys padded ones] woud use up to much of savings,so we are looking into hopefully getting something like it through OT as that is where all of own wall padding originally came through.

Thursday, 15 July 2010

piss,doctors and freecycle

the gp came today,wasnt a great experience,as was starting to get quite out of control from yet another day of new mostly unplanned faces about, luckily had beaten up the table and not the doctor or staff,as woud rather knock self out than harm anyone else.

they tested a piss sample there and then,which didnt show anything [other than it being piss],and at the end of it,they said the signs are deep dental infection which can cause all the symptoms am having, so have been prescribed amoxycilin liquid [that yellowy banana stuff].

nearly made the mistake of drinking the piss as it was in one of the disposeable cups that drink redbull in,and it looks exactly like redbull which had been drinking at the time,no loss if had done,probably woud have been spat all over someone else,needed something to laugh at today.
afterwards was ticcing very badly-the usual,normal stuff.

not been as bad tonight as was last night,but have had the fever and sickness on/off all day,think might have had abscense seizures as well.

was mums birthday this week,and had been thinking about getting her something off freecycle,as she will whinge about anything that buy not been good enough,have bought her hugo boss perfume before and she complained about it [though doesnt stop her wearing it].

have been thinking of whether to put up some wanted item posts on freecycle, an old large enough bucket-shes always wanted a downstairs toilet,so nows her chance? might just buy her one from the worst shop possible to give her something real to complain about this time,and cant forget some cheapo sandpaper like toilet roll either,but she already buys that so may just actually buy her sand paper.

she is actually serious about that downstairs toilet,might just dig a hole in the back garden,stick a wendy house over the top [that have gotten from freecycle],and itll be like old times for her [her house,as a child had outside toilets].

Wednesday, 14 July 2010

wendsday,yes its a shit title

had a better day today-no full seizures at least,though have got a fever and feel knackered all the time.

this morning had finally gone to start the part-changeover to the new riding school,had had a few meltdowns already ontop of feeling not well so was trying hardest not to show it as otherwise woud not have been allowed out.
did get to go out,but it wasnt mostly a good experience-nothing to do with the riding school,who are very understanding and willing to support in any way,nothing to do with the jasmine cob will be riding most of the time [called ozzy],and nothing to do with support staff it was because was not able to do usual routine which is starbucks afterwards,they said it was to much of a risk to be out for that long with the way the seizures are right now,as soon as got back just went into own shower/toilet room and smashed head off the wall to knock self out-as was going to end up triggered by the building crap in head about it.

have not been out since wendsday last week because of not being well or had a starbucks since then,and have been getting low blood sugar [frapachinos are full of sugar was told once before by a dieting staff] so one of these woud of helped,though might have just been desperate to use that as an excuse anyway.

the horsey visit...
his name is ozzy,he is the friendliest horse? pony? [coudnt work out which but he is a cob] around-he is another jasmine cob,which makes it a lot easier in getting used to him-here is a photo of him,he was wanting to see the stable cat as well,which was what had bent down for:

shannon,the horse was supposed to be riding,is to be used as backup for when ozzy is ill/in use,though woudnt be able to just swap like that so hope it doesnt happen.

besides all of that,have broke part of the laptop again,one of the boys was set off right next to self,which in turn set self off-so must have kicked out from the pain at the nearest thing/laptop.
bloody tracking pad and one of the mouse buttons is knackered again,
is lucky it has lasted this long,through this much damage as well, as was told the hard drive is under the tracking pad so can easily make it not work.
will be getting it fixed as soon as possible,at least its useable,just abit of buggering about to get do it.
for some reason it wont drag down,or to the sides,but will do all the other movement.
the last time it was broken it was that bit that got damaged,these things shoud come with protective cases.

Tuesday, 13 July 2010

same old crap

feeling very bad at the moment.
since last week,the paramedics have been called out most days,due to having multiple worsening seizures-they stopped without needing to go to hospital to sort them out which is a huge bonus,but have been told its heading for status epilepticus,unless get meds sorted as soon as possible,and GP wont add on anti epileptic meds,apart from prescribing benzos for emergencies.

paramedics had told staff to phone as soon as the seizure happens, so am unconcious and able to be brought into hospital,as otherwise will refuse to go in,but luckily had come around by the time they got here.
the medics today were very experienced in autistic adults and children,and were probably the most understanding paramedics have ever known.

one of them is dropping off a print out photo of her fluffy cat [like biscuit different colour],and she really understood the issues was having ,but was fucked up to badly react anyway.

they said blood sugar level[?] was low,and temperature was high,and think might have an illness which is what is making seizures worse,so GP is finally coming out-they had to force him.

am not riding tomorow,its the introducing to the new riding school thats going to be happening [slowly],will be first time out since last wendsday mostly because of the seizures,cant wait to get out.

Saturday, 10 July 2010

medication changing

due to being helped to see what am doing to self by not taking ensures,as well as the warnings off paramedics that one day soon will wake up in hospital after a seizure [am extremely hospital phobic for sensory,change,new stuff and history-reasons],have slowly started to take them again [since wendsday?] anyway,today,boots brought the new box of them around and coud not believe it-after having built up some strength with them-was told that the company has changed the bottle,so it was put into an old ensure bottle.
all was well soon enough.
then tasted it,never woud have thought ensure coud taste any worse than it does already [a sick strong yogurt taste that stays after in the same way fish oil capsules do],but they have gone one better.
it tastes fucking disgusting!
puked it back up,showed staff-tried to get them to try it as they thought just did not want to take them again,but they woudnt try it as its classed as medication.

so after the long time have spent not eating anything,or taking ensure-getting the strength to start back on the liquid-and the company changes them?

why do medical companies do this?
am fed up of them changing stuff,it might not mean anything to people not like self,but to self it hits faster than anything and makes all the difference between having them and having some shit symptoms from not having them.

Thursday, 8 July 2010

new riding school stuff again

officially start visiting from next week,but not looking forward to it and am denieing it in head.

the plan is will be spending time for some lessons with staff,shannon in the indoor arena,and then the instructor until have got them both and the place into routine,before doing any actual riding.

they do not have bareback pads,but-have been allowed to buy one,which is awesome as had thought theyd say its against insurance.
am either buying the sheep skin lammfelle one jas uses-

or,the libra:

hope to get more visits in before the proper visit.

time travel with seizures

have worked this one out-the past few weeks feel like theyve disapeared and am back at mums at the weekend again,due to the amount of seizures am having,so time travel really exists or so it seems.

during riding this week,was having a long pattern of abscence seizures throughout the whole lesson,the instructor [who is one of the people am led by] got a steel toe cap up his bum as he bent down to put a mini block jump up with jasmine still plodding on-he didnt realise had just skipped time.
have been having bad ones every day throughout the day very recently,and yesterday they called an ambulance as GP does not do out of hours for some reason,we were expecting some emergency eppie pills whilst waiting for the neuro appointment to come up to sort meds out,as already get prescribed diazepam for noise anyway but the gp was rubbish and the paramedics just tried to encourage to go to hospital with them,was out of it for most of it,as if was on a different speed to everyone else,didnt even notice when they stuck the temperature thingy in ear-which makes a loud beep-that woud usually trigger a meltdown if was in a normal state.

they then said they think part of the reason the seizures have got worse,is because am not on any food at all,and have been refusing the ensures for a long while,they said that liquid food like ensure and solid food helps the medication go through body,or something like that-and without any type of food at all,its stopping the medication from working.
have to admit,they coud be telling the truth,and not just trying to encourage taking the ensures like everyone else,but have noticed recently am getting more TN attacks [a fault in the face nerve]-which is part of the reason am on tegretol.
so have managaed to have some of a bottle of ensure last night,had some of this mornings and evenings,and a little of tonights.

they also said am not drinking enough,though that isnt controlled- when feeling the before-seizure signs do not like to drink.

was completely knackered today,and worn out and for the first time ever? had lay in bed during the day-have never done this usually [unless have been severely sick but cant remember last time] as lying in bed is night time routine for self.
had a few seizures today-but only the bad one tonight-just after had had night time medication-this one has left head dented,and it took a while to unstiffen arms and legs,hand is still difficult to use now,and it feels like whiplash in neck,matress has been moved to floor since yesterday so was lucky.

the gp had been phoned today,as he was supposed to come out today,but they said they cannot do anything until the neuro appointment,apart from prescribe supositories of diazepam,fuck that-have had them when younger and woudnt wish them on anyone.

so hoping the little ensure will help cut them down a bit at least,and hope wont be as knackered tomorrow,or seizuring so can at least go out,dont think had cared less about it today with the wya was feeling though.

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 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-

Monday, 31 May 2010

a goal has been reached...sort of

its bank holiday in the UK today,so what is quite unknown to horse riding shows,there have been a few today/monday,including the big warrington horse has been a goal to be able to go to a horse show [and not be dragged off by staff as soon as we get there],and the owner of this residential service is hugely horse mad,not forgetting has many horses and ponies on the farm and collects them like am collecting breyer model horses so she found out about this smaller show today also in cheshire,as the warrington one is to big for self to cope with.

had gone with staff,as well as one of the kids and staff from the childrens side,unfortunately though it had been to noisy to get out the car,because of the constant talking on loud we sat opposite the show jumping arena in the car and just watched those classes,as cars werent allowed further up.
service manager knew wasnt going to be able to come up to her truck,and brought the pony she was showing down to meet self,as he is a new boy which was awesome.

we watched a lot of 'jasmines' going past as well,so many skewbald and piebald cobs on show,and they all looked great without even having their manes done up.
had to miss out on the shop/stalls they had,because of not being able to get out,which had been hoping to do.
had also been offered to help lead the pony around as well before it was known how bad to ground was.

s/manager is now looking out for more accessible shows to go to with did fuck head up for the rest of the day,because am fed up of being unable to access stuff due to noise,had a very new pair of top of the range peltor ear defenders and earplugs but that made no difference.
its just lucky the warrington show was on at the same time,as most people had gone there. least had got there,and stayed for a while,did have meltdowns but they were not severe,no seizures.
got some photos and video of it,but being sat in the car,the fence got in the way most of the time,anyway-heres some photos:

still cannot stop laughing at this last photo,the lassie dog was walking up the path with his owner and stopped exactly opposite the car to have a poo,after trying to drag him and turning around,the owner noticed he was trying to have a crap and she turned away to watch the horses instead.
had had the camcorder fixed on that spot for the horses,only for lassie to walk in on it wanting a piece of the action, still cant stop laughing at it,staff dont agree with it though.

Friday, 28 May 2010

the sensory equipment came today

the several items had ordered from the ROMPA sensory store came today [friday].

its awesome stuff,took some quick photos,didnt want to take the vest off for photo so just did a one handed shot.

one of them is a special type of rocking chair,called the rock n fold chair:
have to get used to having it around first,before using it but everyone else tested it and really like it,apart from one person who complained about it being to much to get into for his old age.
it can be filled with water to stop any chance of it moving,but wont be doing that.
will be able to bring it in the car as its portable as well.
it fits all ages and sizes,as long as are not obese.

the other item,is the southpaw bear hug deep pressure vest [shown quite loose in photo here as there were only male staffs on the time and they're not allowed to do this sort of stuff when it gets close to tit area,have had it tightedned up now by female staff]-

its made of neoprene and is a bit like those neoprene knee supports which just strap together like velcro.
was instantly affected by the pressure of the vest,had been having quite a bad day-wrecking toilet rolls,hitting out and cutting self, but as soon as the vest went on it calmed self down instantly,really cannot recommend getting one of these enough-either for self or an autistic child if are pressure seeking.

have just found out these vests have added southpaw weighted straps for add on,so will be getting some of these.

woud highly recommend checking out ROMPA,though one issue- its not exactly got alot of options for pay.
if are a visa electron debit card owner,ROMPA do not give it as an option but staff put it through as a 'visa debit card' [this is the higher up visa debit card that banks wont give to people on benefits cause we're not posh enough],and it still worked on both sides.
think am going to get addicted to buying something from them every week now,like ebay.
we're still waiting for the bloody fan to come.

Thursday, 27 May 2010


thinking TRA is becoming a log for seizures lately,am having so many of them.

today,had gotten the warning signs this morning to expect a seizure, and had to stress out all day not knowing when it'd happen.
it finally happened tonight,but they were several big TC seizures,staff had been with self in bedroom most ofthe dy because of what were expecting,had been sat on the bed next to the padded wall as well which was a big help.

usually,when expecting a TC seizure,will go into the wetroom/shower room and sit next to the toilet with the door closed hoping no one hears them because of history in previous service where woud be coming around from seizures to the sounds of 'its attention seeking',or 'its task avoiding' or some other ignorant shit,but this option ends up with blood,and suspected fractures.
trying to remove this thinking,but its hard-that past has had a huge mental effect on self.

apparently its going to be a few months for the neuro appointment for meds sorting to come through,which is stupid as am getting severe seizures almost every day now,surely thats a bit more important at least than the lowest level of priority.

hot weather

cant really be more fed up with it than right now currently.

today,had missed out on horse riding due to having a number of abscences and one big TC seizure,the hot weather has been triggering them badly.
was told had been restrained to avoid injuring self whilst in the TC seizure-this was in the car,so was lucky that it wasnt on concrete,or the minibus.

it has caused a lot worse post seizure dyslexia symptoms than usual today,ontop of the aquired spelling fuckups through brain injury, really cannot be bothered with it, or this bloody weather.

on the good side,managed to get the usual frappachino from star bucks today,woud have to be in a coma to not get one of those though,curse those bastards for not doing a delivery service.

Wednesday, 26 May 2010

ROMPA update

Have finally managed to order several items from ROMPA this week [they're a big sensory store,we've had a sensory room among other things off them here,plus the NAS day centre that used to go to uses them],have ordered the bear hug vest,and 'rock n fold chair'.
the bear hug vest gives strong pressure and can be worn under clothes,whilst will be able to bring the rock n fold chair anywhere in the car/minibus as its portable.
cant wait for delivery,supposed to be this week.

still waiting to get social workers approval of the padded fibre optic safe room/cabin,and theres something else hes been asked about but cant remember,its due to the backpay that had built up from when the high rate mobility was put back.

Monday, 24 May 2010

Tics and horses

not talking about those fat white squishy things that attach themselves to animals for dinner,but movement/vocal tics.

the heat and increased seizures has brought them on severely lately, and last night was not in a very good way,beating up both self and what was surrounding self due to being fed up with body being well out of control with was another bad day for this-had a seizure this morning whilst out [not to bad as had gone out before the sensory overload was able to build up]
but after that,was ticcing all day again.
this evening,was able to go for a drive with staff because of the effect heat has on the seizures and tics,so we had gone out to see the local gypsy horses,and as always-had camcorder with self,so took some photos of them busy munching away in the sun:
the horse at the bottom looks like he's giving birth to a white foal!

we stopped off at an old regular that used to go to see with NAS support staff,a shetland pony-

The tiring adventures of Lottie and Biscuit

This week and last week,Lottie and biscuit have been busy getting tired in the heat that is going on in the UK right now.
today,was at the farm to see Lottie and had brought her a treat [some ham] which she scoffed down with her posh food [part Iams wet food and part Applaws dry food] along with some whiskers kitty milk,by the time she was finished-she was tired out and came outside for a sunbathe-so got some photos of her.Here she is practicing her 'today,sesame street is sponsored by the wonky letter L' routine and the fine art of kitty yoga..........or she coud just be giving her crotch a wash.

Biscuit was in her tom cat avoiding panic room on saturday,but the doors were opened by dad as the heat is even worse that way,though she likes it hot,the silly cat,then again its the maine coon in her that does it.

Heres the photos-