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-

Sunday, 23 May 2010

new banner

the re-edited banner is finally up,though it had been on plans for a long time,remade the old banner today finally.
besides getting used to the idea of changing it,seeing GFB everytime logged on here was a reminder of what was missing and also reminder of where used to live.

Lottie like GFB is a natural poser so was made for it.

Friday, 21 May 2010

shit day

was knocked out unconcious today by severe headbanging due to the smoke alarm going off,and as a result of the injury had had a TC seizure.
luckily this was in the shower tray part of the semi wet room,as have been told to sit there instead of the opposite end where its all hard tiling and a toilet,the shower area at least has semi shock absorbing walls.
have got mild concusion,but memory is no way near as bad as the other day when the same thing happened but far worse.

Tshirts have come

Cant recommend this ebay seller enough-
have bought quite a few pale blue polotshirts off them up to now,they have horses sewn on to them,they take a bit longer than normal stuff to get because they're custom jobs.Here's the latest ones have gotten, which came today [the horses are completely straight but look a bit wonky as its difficult holding with one arm and taking photo with other]:
shows how bad memory is,thought had ordered a few skew/piebald horses like jasmine.
the last one had got looks like Jas,just not clinically obese.

Latest buys

Last week had torn apart the only pair of boots/footware have got/will use in a meltdown so was in desperate need of a new pair,they were already in need of replacing anyway so they luckily werent a good condition pair.

was looking into getting a pair of timberlands as had had a pair for years before which are strong and obviously last-but getting them is another thing as they are in sold places that are inaccessible to self.

Ended up remembering the equestrian mountain horse range of boots,and we decided to go to estate supplies to check out the boots there and hoped they stocked mountain horse,as these boots can be used for everything,including riding.

was in luck,they stocked the MH protective rider riding boots-

these are heavily weighted with metal in the sole of the boot to keep heel down for riding,which in turn has finally helped self walk better,as am not a heel walker,the extra weight helps to 'feel' connected to body more as well.
they're also taller so have more support which was also needed.
theyre steel toe capped to stop Jasmine deciding to have a good stamp if she ever plans to.

Estate supplies are always good for free horse magazines with horses for sale in them,so had grabbed a few-can always wish to have a horse in some way or another one day!

Also got a pale blue shirt through the post today,its only a cheap one,
coudnt care less of the brand but spotted it on ebay [brand new with tags],its a bit big as am not used to needing only large in them now,but it will be ok.
have got a few more polo tshirts with jasmine lookalikes coming as well,they just take a bit longer because of the sewing.

And ordered a brand new fan today off there-forget what one it is,but
its wall mountable [the handyman/builder here is going to mount it up high in corner so cannot break it],reviews say its ultra quiet,and its also got a remote control.
having a sound proofed window it gets extremely hot in here,and the hot weather is possibly worsening seizures,as well as making self sick and tired so this was needed.

The sensory equipment from ROMPA still hasnt been bought yet as predictibly,social worker hasnt got back in contact with manager yet to give the goahead as theyre not allowed to buy the stuff without his say as they are big things.

The motability car has been sorted-but its still stuck on one final stage-the dwp are delaying in adding appointee onto records and he cant order the car till then.

Lottie is doing well,bought her a huge bag of posh natural kitty biscuits [Applaws] recently,and need to buy her a new collar and tag as she lost them again.

Thursday, 20 May 2010

cancer free!

Today was the big day that had to go to hospital,to get the 'tit' lump seen to.
anyone who knows self will know how much of a living hell hospital is and not even the threat of a emergency sectioning from paramedics just to get self into hospital for quite serious head injury has been enough to was at a specialist cancer unit,the nightingale centre to be exact.
we had had a few visits last week and this week to get more settled with the idea,and one of the staff had took the camcorder to film the inside with so was able to see where was going to wait,the corridors etc.
the staff at the nightingale centre coudnt have been more nicer or helpful,they had been told about self having autism and all the issues woud have whilst there when they phoned to make the appointment- we were taken around the back way into one of the private and quiet 'garden rooms', which did not turn out to be a garden unfortunately, but was next to their garden.
was restraint walked tightly by both staff through the hospital,as was
attacking out a lot and having a stack of tics due to being there,it did help having that extra pressure from both as well but it didnt help with the extreme hospital smell which brought on the bad memories of hospital,it probably didnt help that was wearing steel toe capped boots either,good job no ones shins got in the way other than own.
had to have an ultrasound done,but got one of the staff to do it on their arm first,the pressure from the thing they use was nice but the jelly was one of the most painful things have ever felt [have got a sensory issue with liquid on skin].
we had to go back to the garden room to wait for doctor,so we all sat on the bed together-one of the staff mentioned that it actually had a remote thing which moves it up and down,so we sat there for ages just rocking whilst going up and down-it really helped distract,and staff got a video of it [cant put it on as it has staff in it but heres a photo:

Was nearly up close to the ceiling! was really wishing coud have one of these at home,what a ride.

The doctor then came in and said it wasnt cancer,it is a cyst and there is no chance of this turning into cancer.
He wanted to get some history of cancer/suspected 'tit' cancer- mum has had it,sister had a cyst last year and had a biopsy with hers [not cancer],and mums mum had the cancer terminally,for bits of fat and skin-they sure do cause people a lot of problems.

On the way out,was tranced by a line of those brand new three de TVs
they had different moving real scenery on them,but was stuck on the waterfall/river one,got to get one of those tvs,awesome!
Anyway,we went back out via garden again,got into car and took some photos of the glass on the side of the building which have no other word for it other than awesome:
we then rushed away as fast as possible,and was allowed a starbucks pickup on the way back because it had been very difficult.

though it was an extremely difficult day and torture to self,cannot fault the hospital staff for their understanding and home staff for all the help they did, as woudnt have been able to go in with anyone else.

Train set is up and running

Cannot even remember when had gotten it,but had finally gotten the TOMY thomas the tank engine and friends deluxe train set that had been after for ages [well after any thomas train set].
have left off the grey track which goes over and under the blue track.
put it together with staff and must have spent all day at it,for a kiddies train set woud think itd be a lot easier.very glad was not allowed to get the hornby one [because of the sharp break offable bits] in the end,it has turned out a lot better because it is more colourful and a lot bigger.
only problem with it is the batteries run down quick,and it is noisier than the hornby one so have to use ear defenders with it.
it is currently on the heavy duty rug that have used for sensory seeking/pressure for years,but it is going to be permenantly stuck onto a MDF board so it can be kept out of here when not in use to avoid breaking it.heres a few photos:

Sunday, 16 May 2010

changes to the blog

Have been writing this blog for years now,and there being nothing new-there is one service that is the cause of most of the problems had posted about.

These still affect self,even though have been living here,in a different service since November,and wasnt in the other home before moving in anyway as back in may they had blocked access by changing all the building colours and allowing one of the residents to get a pet budgie [loud squeaking noises that they had had written down not able to cope with] whilst was at mums/dads one weekend.

Am trying to move away from this,to stop getting stuck on bad memories like the one above have unknowingly just written,and because they are also partly what stop self from feeling settled here,so have decided to start anew sort of and unpublish all posts that are from before january this year,have wanted to do this for ages but did not have the strength for it as only know how to do it one by one.
Will put them back eventually when feel fully settled and do not find
thoughts being invaded by the problems of living in the other service.

May also put back the post comments sections-whatever they are called?,had taken them off some time ago because of several reasons,the main one being because rarely ever realised a reply had been posted and when had noticed it,did not have the communication /interaction energy to be able to reply,and do not think its right after someone spends the time and effort to put a post together.

May also be slightly changing the banner to if can edit it as do not have the unfinished version anymore,reason being it is of a very special old friend-GFB whom have not been able to see since not being back at the old home,its hard seeing him in picture but not been able to physically,dont even know how they're treating him if he still calls around there,because am not there to stop certain people being abusive to him to get him to go away [not residents].
If it is changed,the new banner will have Lottie,but not sure if have got any good enough photos for it yet.

Thursday, 13 May 2010


Today went ok.

Concussion has been bad [and still is] but managed to do horse riding today,went with probably one of the most understanding staff have ever had,she is one of a very few people in life who has not automatically judged everything based on the fact am able to speak in text well and use a computer well.

Jas was up to her old tricks,rearing her head and biting the RI when he tried to get her to move faster, watched as Rollo kept escaping and making a dive for the feed room,after the lesson held one of their new pups which just sat in arms shivering from the wind.

Went for starbucks afterwards,and then pets at home-got lottie a big bag of Applaws biscuits [chicken and salmon] and a big box of Iams saches,only the best for madam.

Ordered some pale blue and pale pink new shirts [not designer] off ebay,as well as some sports bras and a vest top that wear over them.
They were all needed as have got very few items left due to ripping them all.

The tit lump specialist people got in contact today,they are sorting out a quiet private room to wait in,a visit to there before the appointment day,and the appointment is next week.

Tuesday, 11 May 2010

KOed OK?

Head injury is shit.
Have had ongoing accute head injury going on since yesterday due to a lot of changes and noise,even staff coud not believe it but said had coped well,which is true,except the skull hasnt.

Today had been set off one time to many,and as soon as the noise near to self started was in severe pain-had gone into head banging the kitchen worktop and knocked self unconcious,then had had an abscence seizure,was greeted with the loudest tinnitus have ever experienced when finally came out of it all-it was actually deafening.
Eye sight is all over the place.
one of the side effects of lifelong HI [more so in adulthood due to constant issues through not living at home] has been to do with spelling-it has got a lot worse,am not dyslexic though often look it in posts.

Have not been able to access the main downstairs rooms apart from own bedroom,for a while as obvious equipment which had always been in a certain part of the room has been moved about,new sofas came yesterday with no warning,and had not been able to go into the kitchen till late today,as one of the kids decked the window in at the weekend and we had to have something covering it that [to self] changed the room entirely,they put a new window in today,saying the classic line that so many people say- 'dont worry,theres no noise at all,its just being put in the old ones place',the heavy constant banging from that triggered a meltdown, and headbanging had cut the side of head,as well as dented it.
Really wish people woud not lie,had asked over and over and over about noise and was told it was going to be quiet.
Am not even sure will be able to ride tomorrow because of the state head is in.

Am still ordering some sensory stuff from rompa along with the others,am allowed to get own safe space [a little fully padded box-room to put in bedroom,it is like a little sensory room inside it and is for when not feeling good.
Had wanted one from but one of the kids have got one,and staff said they are not stiff and padded on the sides which is what need due to head banging/behavior etc.

Getting a bearhug vest [its called something like that],its made out of neoprene and the wide straps attaches over shoulders as tight as wanted to give bear hug pressure.

Getting a plastic rocking chair [no legs so easy to get into if have got todds paralysis],it is also store away so it can be put somewhere.

Getting a sensory swing [possibly hammock type,all depends].

Getting some new kooshballs.

Not sure on anything else yet.
Woud recommend checking out ROMPA to anyone-we have the catelogue here [nicked from the childrens side,of course,though cant be blamed for that one].

They have to pass it all by social worker,which just slows things down as he isnt one for answering,maybe thats a phobia that a lot of social workers happen to have.
Am also phobic of social worker,in the sense he always turns down stuff that is to help self,for stupid reasons,with sound proofing being the last one there.

Some medical stuff is on the list as well,and had wished for an awesome adults fibre optic vibrating ball pool [from rompa still] but they said have got no space for it.
We need an alphabet zoo type place with ball pools etc for adults! theres some for disabled adults but none local.

Anyway,thats enough moaning for tonight..

Friday, 7 May 2010

Ebayin...and stuff

Been at it again today.
Have bought the following:
*Tomy Thomas & friends: thomas & cranky deluxe action train set,
its used,but in excellent condition,it is being stuck/nailed/whatever onto MDF so staff can put it elsewhere to avoid being damaged, apparently its huge,just wanted one to watch it going round and around [something self,and the prof. autistic am living with both enjoy,was told for both of us its about the predictibility and motion,
but know that it differs for other autists].

*A few pale blue polo tshirts from this seller:
have bought a pale blue one off them before,which had a horse just like jasmine sewn into it,gone for different horses this time though.
Have a habit of shredding clothes to communicate when other ways arent available,so have got very little left,which is why have bought a few.

Also,had pre seizure warning signs this evening,and havent had a seizure yet,but am not looking forward to it,think its even worse when become aware of the warning signs as its all can think of now.

Going to mums/dads tomorrow as usual,but am buying sisters boyfriend a new xbox game for his birthday first,had been hoping it woud be something decent so coud borrow it later when hes fed up of it,but then realised no-he likes all the bugged up film licence crap because its got marvel or batman on the front,and had also forgotten the matter of a TV,which had been smashed some weeks earlier.

Unfortunately car did not get ordered today because of the seizure symptoms,but the childrens building were hogging both the car and minibus today,so probably woudnt have got out anyway,avoiding problems like this when finally get the car will be awesome.
Hopefully it'll be monday now,when reorder goes ahead.

Thursday, 6 May 2010

Doctor visit

The new doctor called around today,did not interact with him but did have a manager and keyworker in bedroom with self.

They think the lump is a cyst and need to go see a 'tit' specialist about it,so he is arranging that.
he is adding on a few extra ensure plus milkshakes per day,as he says one is not enough.
And he thinks am going to have to have an extra medication added on for the seizures as am already on the highest dose can be on for tegretol retard,but because am new to the GP,they do not have records so they are having to sort through all that first.

He recommended to staff that the redbull be cut down to one a day, as it can play a part in seizures due to having no food.

Ontop of all that,we're also looking at getting a lot of sensory stuff in here including swings and a padded cube safe room in bedroom, which is very awesome indeed.

Have been told am not allowed the hornby thomas and friends train set as well,because of the track being sharp and possibility that will use it on self,so as far as know,we are looking at getting a TOMY thomas set instead.

Hopefully,will be going out to order the car again tomorrow.

Wednesday, 5 May 2010

cleaning the floor with epilepsy

Didnt manage to ride Jasmine today,because the jack russel 'goggies' on the yard started barking and staff did not want to risk doing the lesson as goggies had triggered a mild meltdown.

Almost had to cancel the lesson whilst in the minibus in the carpark because it had been pissing it down as usual [having severe sensory difficulties means am not able to ride in the rain and they only have an outdoor arena].
It had stopped raining,and was just getting out the MB when was hit by the barking.
Still got starbucks afterwards as normal,and noticed a lot of horses in super bright pink MW rugs on the way back,probably from Katie Prices own brand,was a good job they werent wearing the hotpants she sells.

Am currently recovering from a non triggered TC and combo-d abscense seizures right now,and they are saying have to have a doctors visit [here] tomorrow,not looking forward to this at all,as its all new,dont know them.

had recognised something might happen before it did as was feeling like was floating,and as if had had a stroke-am not usually able to recognise the post seizure weirdness,so this has been a good thing.
Managed to move the starbucks out of the way,as did not want to cover self in it,and have to say,one good thing about own TC seizures is they're buffing these floor tiles great!

Tuesday, 4 May 2010

Mobile sprinkler system

Every weekend,when am brought back to mums/dads,there is the same routine.

Thomas [family call him that when he's been a naughty boy,its really tom tom] has been spraying everything like its going out of cat fashion lately,and he has been trying to molest poor biscuit so much that she has gotten herself a panic room:She cant help being beautiful,and it doesnt really help when she rolls on her back to all cats to show she is not a leader/threat,as our Thomas thinks he's got a wife in the making now.

He has actually managed to spray her,once when she rolled on her back in front of him,and another time he got her in the face whilst in the house,she is well and truly now property of Tom tom.

He has tried jumping on her,s/staff said that is how they have kittens, have had to rescue her as she gets into these huge screamy hissy fits [more than normal],and hes even worse.

In the house,he sprays anything,and have had laptop,rucksack and the little horsey rucksack hosed down by him [Lottie doesnt mind when she smells it though].
As soon as dad sees his tail lift up,he picks tomtom up so that he's holding him almost like a shotgun under his arm,starts telling him off and puts him out-arse first out the door and no time to put tail down!

Have offered so often to pay for tom toms neuturing,but they keep saying that he may have an owner so think they shoud do it, but they are not much of an owner if they are letting a tom roam the streets when are able to get free or cheaper neuturing now.

Monday, 3 May 2010

Now how did that get there?

Tonight,after giving top of tit a scratch [own tit that is,not anyone elses],realised there was a hard moveable lump.
At first,thought may have got a flea bite off lottie [shoudnt have thought that poor cat she hasnt got fleas],until checking it out more and realising a lump had somehow got in there.
Showed one of the staff it, and they said its about the size of a pea.
A bit later,also remembered that had found it some time ago as well,
but had forgotten all about it.

Having just checked out a bit about tit lumps,this one seems to look and feel like a harmless one,cant remember the name of it and woudnt be able to spell it anyway.
not a doctor [obviously],but the experience of having many rats and cats with cancer,showed that cancer tumours were not moveable like this lump is,and am not bothered in any way about the thought of cancer,more to do with having to go doctors and hospital which for self is a nightmare,wonder will they just whip it out while am in there to get a tooth out soon?

Stupid tits,woud rather they just whip those off,they have no use for self and are only good for people who want babies,or extra airbags.

Just a thought,but what are other Autists,support staff,carers and family doing,when it comes to checking for tit lumps?
especially profound autists with little understanding and very limited communication ability?

Have only seen it done rarely on the prof. autistics have known when they have gone to hospital for tit scans,this sort of stuff is one thing that shoud be taken more seriously by all of us.

New pads

Have upgraded pad [as in pullup,a not to over-bulky type of nappy],
finally,and am now getting Tenna slips.

These are not pullups-they have to be taped like a regular nappy, so am getting help with putting them on,but they are so much better than pullup pads,the padding has a lot wider coverage than pullups,which is one of the main problems have got with them as they let through even smaller amounts.
Woud recommend giving these a try if do not get them free already.

Communication passport update

Today,staff were looking through the old 'communication passport' file that had been written years ago about self,by the then SALT of the time.
-communication passports are written for supported high needs service users under the learning disability team in social services.
As it was written every week for over a year,it went into more detail than any pyschologist type person ever woud,and he was an autism specialist-he knew more about self than even family.

The communication passport is still followed by staff/specialists today,even though it has rarely been updated so it confuses people when they see or are told different things to what the book says [such as being destructively hyperactive],which is why staff are now starting to update it.

it really does feel very strange hearing staff read it all out,and in some ways it is nice to hear of the goals have met by not having some bits of it anymore or on a lesser level,and the lack of awareness was showing of a lot of issues back then,but it was also very difficult because it was assessed in a time when was surrounded by abusive,neglectful and [some] advantage taking support staff,so it makes self look like a human hater,when am not [well not of all humans].

Diagnoses still havent been changed over from years ago,so they are having to trash that page and start again,and they are changing the photograph on the front of the file,because it is of self with one of the very first boys [rats] that had had from years ago,am a bit of a fat bastard on there to with long hair which does not look like self anymore,due to weighing less and having almost a skinhead,but also find it difficult seeing pictures of the boys as it brings back memories of the cancers they went through [something that has put self off ever having pet rats ever again,because of losing them so soon in such a bad way,as selfish as it sounds].

Blue badges and autism

Blue badges [thats the cards we have over here for parking in disabled bays with,they dont look anything like a badge],are always associated with those who have severe physical mobility problems,such as a wheel chair user.

One thing online mixed disabled communities and non disabled communities have in common is the amount of users who think disabled bays are only needed by wheel chair users,[the outdated disability logo of a wheel chair user obviously does not help but then what else coud be used].

Another common thing between both,is the amount of users who think only severely physically disabled people get blue badges, or high rate mobility of DLA [disability living allowance],seeing the rest of us who get both as frauds,but also badly judging many severely physically disabled people who do not use wheel chairs,or may not need mobility aids all the time.

Many of us on the severe half of the autism spectrum get high rate mobility through the severe non physical criteria,yet may be very hyper when getting out a car,so look like unworthy of a disabled bay,
we usually aren't even noticed anyway as people usually think the blue badge belongs to the driver.

Disabled people can be our own worst enemy when it comes to blue badges,because so many do not understand how having severe developmental and learning disabilities can cause severe and life threatening or injuring mobility/outdoor problems,we all have individual issues rather than the same.
The criteria for us to get high rate mobility [and thus blue badge if wanted] is extremely strict and difficult compared to the physical disability criterias so,anyone with autism who got their BB through their HRM are required to be more severely impaired than through physical need and so are not just getting it for nothing.

Before preaching about difficulties they have not got one bit of understanding of,why dont people who think autistics shoud not get blue badges,do some shadowing with the organisation am in,or with the NAS,or with autism initiatives or any of the other autism support organisations who have HRM and BB users,to see some of the reasons why we genuinely need BBs and disabled bays?

There needs to be a lot more awareness of disabled parking bays and what users of them can be impaired by,because the official ignorants criteria is made up of:
-is not able bodied,this means the badge owner will be a wheel chair,frame,rollator,crutches etc user-just anything physically obvious for the severe disability clueless to understand.
-is not young/middle aged,yes-if believe some, only old people get blue badges! so many disabled people have problems with age discrimination.

in own experience-sainsburys has been worst for age problems off both staff and customers,once we had been reported by a old age pensioner who had parked across several bays without a blue badge [and actually ran inside past the attendants who didnt care] for parking in a disabled bay and been asked to take the badge out to show the car park attendant it close up,as all of us were 'youngens' or 'little shits' or whatever their favourite word for us all is.

Lastly,not everyone with severe enough autism,has a BB even though they may have HRM, not only that,have seen some people try to start rants on disability forums,about 'all autistic children getting blue badges being a sign of how they're giving them out for anything now',yeah whatever.

Sunday, 2 May 2010

a few bits and pieces

the letter came last week,that is-the letter to prove the high rate mobility/of DLA is back to normal,but it wont start till next week,so cannot rush to order the car till then.
still need to order the crelling harness,and have made a bit of a fuck up as didnt realise the citroen nemo doesnt come with air con unless pay motability to have it put in,so am hoping they will change the order to add it as am not able to cope with windows being open,and it is to hot in this warmer weather already let alone summer.

have come to realise that am not getting anywhere with sensory stuff.
the TC seizures that have,affect the right temporal lobe,this bits main thing is being in control of the senses-in how a persons brain understands what comes in/out,after a seizure,temperarily senses are much more severly acute so needs less sensory information next time to trigger,and so on.
Have had non stop tinitus since head being smashed off a metal gate during a very bad seizure last week,so its making it even worse.

woud say to anyone with head injuring risk,to get assessed for a padded helmet,especially to parents of young autistic children who have not been brain damaged yet from head banging and seizures [or any other issues].
they can be bought privately,but get referred to a neuro for one to be assessed as to whether they think need one or not.

am currently waiting for own one via neuro and LD services,as have not been able to wear the solid nike-bauer for a while due to size issues and tinitus from having solid sides.

Communication just got better

have found out about a new program called proloquo2go [copy and paste its name into google],which is for use on the apple iphone and ipad.
it is touch screen communicative software,using PECS and TTS,and its getting increasing support already from the autism and autistic community.

given that communication devices are out of reach to many people because of cost,the developers of proloquo2go do not know how much help they will be,to the many of us who need either full speech replacements or backups.
the software does cost,but why not for what its worth? am ordering
proloquo2go and an iphone possibly next week,if can get away with it.
have not used JTalk-as a mobile communication device on the laptop for a while because of the battery life and mobility difficulties, so cannot wait to have a better handheld version at last,in own case at least,the more comms aids the better.