Wednesday, 28 April 2010

Self injury [cutting] outside of mental health

One of the things that people never see as being anything other than a part of mental health/illness,is cutting as self injury.

it doesn't matter how much it is explained,it is always seen as a MH thing.

in own case,am a cutter-had started doing it in some form-in infant school using finger nails to dig out flesh,it moved to using other tools late/as an adult due to not realising knives,razor blades,stones,glass etc can be used for anything but what they were made for until was living with someone who did it to.

the biggest causes behind it are sensory seeking,and pressure due to not being able to feel most types of pain [especially outer],to communicate when cannot communicate in any other form,and sensory and information overload.

am lucky in that family and staff always hide as many things that coud be used for cutting as possible,but when desperate have turned to using things they dont like to remove [PECS],and other things they never thought coud be used,plus when am actually desperate woud never be saying am lucky,woud be seeing it as people being cruel for not giving those things to cut with.

will only ever cut on left side out of a lifetime routine,and currently its looking like both arm and leg are heavily tattooed....well...if squint a bit...from a distance.

usually have to wear a thick tubigrip bandage which covers arm [the leg one doesnt work] and hand,to make cutting harder and help the scars heal,but have been getting fed up with it just sticking to scars and reopening them every night as well as when feeling desperate to cut,because am not able to transfer it to other places like other people,so leave it off now.
coudnt care less if people see them-it doesnt mean anything to self,and besides,might give them something else to rant about and make fun of other than their jeremy kyle marathons on daytime tv.

Tuesday, 27 April 2010

A new riding school?

Am going to be slowly introducing a new riding school into routine soon,which have been getting used to the idea of over time.
Staff have wanted this other one used,as its nearer,has an indoor arena so will not be stopped from riding if its raining [a sensory issue for self]and there's another service user that goes [child],have heard its an awesome riding school as well.

They wanted to replace the one am going to with the new one,as its nearer but will never leave it,or jasmine.

The new one is a mainstream riding school,not RDA,but they are very good and accepting with the other service user,so am willing to give it a try.
mainstream riding schools have always been a failiure for self, including the ones with RDA groups attached,but hope to eventually
go to the current one,one week,the new one-the next week,old one/new one and so on.

Havent even found out yet,but am wondering a lot as to whether they will have the special bareback pads there,and allow stirrupless riding,
as am very willing to buy own BB pad if needs be,but do know insurance stuff stops some schools from allowing stirrupless and even BB pad-riding.

the different 'weighted blanket'

Something woud recommend others try,as only just thought of this recently!

Am getting a heavy weight horse rug [stable] ASAP,to use as a weighted blanket [for those who do not know-many Autistic people like pressure and using weighted items ontop of selves].
good HW rugs are very very heavy,as had felt the weight of Jasmines,and thought that woud be great as a weighted blanket!
staff say they are going to have to cut the stringy and sharp bits off, but dont care if it beats dragging an old pissy mattress over self.

Like what am doing as well,woud recommend checking out a larger horsey/tack shop such as robinsons,estate supplies [they have a lot of HW rugs] or derby house instead of buying off internet,so are able to get a feel for right material,and weight.

will be posting results as soon as get hold of one!

Another one,that may work for some people-is body protectors for horse riding.
used to have one of these some years ago,until mum gave it to a charity shop when drunk [what woud banardos do with a specialist bit of gear like that?] it was one of the heavier old style cross country protectors,which covered a lot more of the body,and the pressure these gave was very calming,had worn it off the horse more,than on.

woud recommend trying a body protector out if able to go into stores,as they woud allow to try them, robinsons has a good range but they dont make them like they used to-less padding,more waterproof type material,and a zip up the front usually.

Some autistic people use life jackets,though these are not accessible to self as a every day aid because of the material.

Eppie week

Its officially an eppie free for all week and its only tuesday already.

yesterday,had had a severe TC seizure which resulted in the usual waist down paralysis,and fight to get into the minibus,as staff woud break their backs trying to lift.
it was at the farm,and never even got to stroke lottie.
was wrecked and sickly all day afterwards.

today,was at the farm again,but had had a meltdown in lotties bungalow,over something or other [cant remember what],ended up knocking self out head banging on the metal bars,and went into multiple seizures,am certain that the head injury had something to do with it and not just the epilepsy.

After the long recovery,had to be dragged back to the mini bus,and was told lottie had sneaked in already!
was then dived on by her,so lay on the ground hugging and stroking her for a while,before the struggle into the van.

still completely knackered and sick now,but was really bad when got back,legs are not paralysed anymore though.

on the good side,managed to feed henny,penny and ethel this morning,the neighbouring building is being redone,so they have usually always got their hammers and drills out in the back,and all the lawn mowers are going,making it to noisy to go out,but we fed the girls some cooked rice,peas and pellets.

Thursday, 22 April 2010


today,had gone out in the minibus got a chocolate milkshake from mcdonalds,and went to the farm.
found lotties collar on the ground,so put it back on her,and staff powdered her synulox tablet in her food.
gave her lots of hugs,her leg has gotten a lot better.

on the way back,had had a TC seizure,havent had one as bad as that for a while,feeling very tired and sick still.

went out in the minibus again,just for the ride..
because of the seizure,and head banging earlier [banging was set off by getting fed up with noises],the tinitus has raised its self,and been doing its thing very strongly since,so it wasnt a good idea to go out in a mini bus,with no seal on the doors [ripped out by the kiddies] and unable to wear any form of ear protection including fingers because they act as amps/speakers to the tinitus.

From what can work out,had been head banging non stop from home almost,to far away,and back again,had shutdown through a lot of it so wasnt always aware though was in painfully severe sensory overload.
To make a painful story short,when was brought out of it back home, noticed the window was covered in blood,and with a dropped can of coke-had soaked the shorts and pullups that had just put on before leaving.

So currently getting over another head injury,concusion,todds paralysis [waist down],and realising have got no shorts left to change into,and its to hot for trousers,at least cats can walk around with their crotches hanging out no problem,as a human are treated the same as some death row inmate for walking around with boxers or pullups on.
Maybe they just hate spongebob [thats the boxers]?

Wednesday, 21 April 2010


About the DWP [as long as its them who deal with DLA/disability living allowance].

Why is it,they are very,very,very quick to contact someone when have moved address and DWP havent been told,or some other problem,
but...............when it comes to getting an answer back from them-or benefits returned to normal,they are slower than a drunken slug race ?

Still waiting for the motability to be sorted out,the DWP has still not sent the letter yet,which is to give to the garage to show am getting HRM,but the garages system is showing the HRM as suspended till next year?
The letter is needed to make this official,and will mean the system is sorted out,finally but they do like taking their time.
Do they take bribes?


Have had a great day today.

Got outdoors a lot in the mini bus and car,the weather was great yet didnt get hit by to many lawn mower noises,and there were only a few sirens about in the whole day.

Went horse riding this morning!
Was not allowed to go last week-on tuesday there had been a new staff,but had not been able to build her into routine before she started getting to close,which ended very badly.
So was stopped from horse riding the next day,which set off another day of what feels to self as deepist torturing pain,due to the sudden change,they said it was to learn that things trigger other things,but had wanted to disapear off the face of the earth.

The theraputic horse riding temperarily calms down hearing as well as self and improves interaction/communication,so is liked more than anything as a therapy to self,even more so than the hobby side,had gone through enough-was in a state by finish,broken or ripped stuff,blood everywhere, a split head injury which had swollen so high it gave a face lift,and all the usual concushiony bits added on,then added to the next day,so woud not have seen it as a reward.

Jas was in a good mood today,but she kept biting the RI as usual,had a very good session,trotting and trotting poles,and got the usual frapachino after.

Fed henny,penny and ethel when got back, though had to round them up first as they had escaped into the childrens garden,but we had bought out a bowl of rice,so it was like they were running a marathon as soon as they heard us out with food,they got straight into their home like good chuck chucks and all of them attacked the rice,then they started plucking feathers from penny who is now bare arsed because of it.

was asked to get the eggs from the house,which did do,but because had pulled tracksuit bottoms up to knees from the heat,they all started pecking off the scabs on legs [from cuts],thinking was mobile food for them.
Ethel has got really fat,it cant be from scabs,she tried to eat a staffs mobile phones yesterday which she dropped on the floor,she must have pica as well!

Then we set up paypal and ebay finally! awesome,have finally got own pp/ebay account,the staff are in control of it,but am allowed to get whatever need/want,and it is so much better than having to go through dad.
Today had ordered a pale blue polo t-shirt,which has a skewbald horse like jasmine sewn into it,a new pair of peltor optime III ear defenders as the current optime III hi viz ones are knackered, and a pack of laser lite ear plugs.
Wasn't allowed to buy anything else,but am thinking up a to buy list and have been book marking some stuff.

After that,had got out again,in the mini bus before coming home to laptop,one thing that was mentioned is up till that point,had not been fully non verbal today,brain rarely bothers to switch on speech for part,all or most of the day due to triggers,so it has been a big goal,and does show how horse riding can help with autism.

Friday, 16 April 2010

Online autistic community

One of the problems that affects the online autistic community is the lack of a spectrum,mostly concentrating on issues,beliefs and experiences more common to the high functioning unsupported end of Aspergers.

There are a few reasons why this is,not least because of the difficulties with interaction,language,learning and communication,but a wider problem have experienced is the lack of welcoming and understanding to moderate and severe autists who have ability to use the internet.

Have also seen a lot of nastiness and lack of [trying to] understand towards those of us who are pro choice or pro cure when it comes to mod/sev/prof. autism with a low quality of life,parents of autistic children especially seem to get a hard time when it comes to this,because they get highly functioning adults-who are not/have not had the same living experience and quality of life as the parents child has/will have, being told how to look after their children,from a HF view, which doesnt work.

Another problem have experienced,is users using their own rules to what each level of autism,and label is about as they have so little experience of ASD apart from their own/family/whoever.
In classic autism,many do not understand that mild,moderate,severe and profound autism can not be put into one description for each,because they are all spectrums-even people who specialise in us often judge like this.

we are all very different in how autism is experienced,and will even find some profoundly autistic people can do some things that someone lower down on the severity level cant do.
A common belief is that anyone who claims to have severe autism online is automatically a fraud because we woudnt be able to use computers, use the internet,communicate in they also think severe intelectual disability is always attached so that woud count us out-it isnt! severity is not the same thing as functioning either.

Am limited a lot online,due to interaction and communication- can be sat here all day trying to put sentances together,and find it extremely difficult to get into interactive mode online as well to do back-forth messages,often not realising the amount of messages that go unswered,but no matter the difficulty,being online had opened up a world of freedom.

Besides being completely useless at everything including computers/ internet,staring at the walls all day in a corner,and having a severe intelectual disability,we are supposed to have no humour at all [aspies at least are starting to be understood a bit better with humour now-as it is being changed to 'different',from none at all],just as well those who think these things arent our specialists and understanding support staff,though they sound like they woud be perfect as ATOS doctors [thats those untrained doctors that use books to tell them to chuck everyone off long term sickness/disability benefits unless they are in a coma]!
What happened to judging autism as well as the person,instead of comparing against whatever autism manual they are using like a bible?

Am always being reminded about being funny [child/toilet humour],but dont try to be or notice,and cant remember having known another Autie without their own humour [though there maybe,just as with aspies].

ASD forums are not well set up for us,on the other half of the spectrum,eg-those CAPTCHA things to stop spam bots registering will often require another person to do all the registering if the autie
has limited maths or question understanding,and it takes away the freedom that we have from being online.
There are often users that are called 'grammar nazis' [think thats the word?],these are users who attack,or at the least point out all the language or spelling mistakes of another user,for those of us who have different communication styles or,a limited understanding of language,or word difficulties,dyslexia etc,this is one of the most off putting things on a forum,and is in a way,a form of bullying.
Some spectrumers have a innocent habit of doing this as part of their
ASD,but people dont come to forums to be given language tests either.

-Many users have very little experience of spectrumers beyond themselves or family,so do not know how to react to us,and the different experiences that we write.
Some have even reacted with hate or have taken advantage and bullied,because we might be easier to get information from,they have a bias,prejudice and no understanding of us and project their own faults onto us.

They may react with jealousy and hate-they think we get instant understanding and care,because their own condition,illness or ASD is less visible and they have a harder time of getting any help,we are always assumed to be understood easily,get help easily and have [unwanted] 'sympathy' piled ontop,but it isnt further from the truth most of the time.

The other side always looks nicer.
We often have to cope with being seen as heavy burdens on everyone and everything,many do not realise we may be following what they are saying,if we are trying to communicate with an alt. form,they think its attention seeking or challenging behavior.
Though this can affect everyone,we may have to see comparisons against our sisters/brothers constantly by family,on how we will never be like them,how great they are [listing all the good things they have done,and none of the goals we have done-only bad]-yes,what a bloody great disapointment we are.
It is a lot harder for us to get things out,so have to relie on those around us to know whats wrong,unless are able to translate it from head-to some sort of communication.

If are going to [example] -PC world to buy a new laptop with support staff-and are fully non verbal at the time,but do have a typer to communicate with, who do think the usual predator shop staff are going to speak to? the one showing all the computer understanding via text, or the support staff who are rubbish with computers?
That is exactly what happens as normal-a ghost to people-even to some regulars that self know well,and they turn the sympathy on overkill [for whoever are with].

People shoud never judge an Autie on their severity label,it stops those of us who are severely autistic but not the outdated meaning of low functioning from being understood and believed,and it stops severely and profoundly autistic people who are low functioning by the outdated meaning,from been given hope for improvement.

The amount of us on ASD communities is not going to improve any time soon,but when there are-please do not treat us as any less a user or worth.

Wednesday, 14 April 2010

Another month,another update

Have had a big delay with the motability car,shoud have got it before the end of last month but the citroen garage phoned staff to say they have had to suspend it for now,as they had found out that the high rate mobility had been suspended-they were not able to find out why though.

After a big mess around given by the benefits people [due to needing people to speak on behalf and having a new appointee] they finally
said what was going on.
They said because had moved addresses and not told them they had to suspend it,the previous place had not told them of the new place so
have ended up in another hold up yet again,wasnt surprised actually when was told the motability contract was cancelled as so used to messups with it by now.

The HRM was quickly put back as soon as they stopped messing around and allowed appointee to sort this out on behalf ,and will be getting the car in less than two weeks,but-the benefits people have now said shoud not have been getting the care component of DLA because am in a residential centre ,so they are now taking back whatever money has been building up,though they are putting back all the HRM since the suspension.

Another problem that has happened recently,Lottie-

Has had some sort of injury/accident,to her back leg.
Lottie was spotted limping around the farm unable to put any weight on the leg,and the farm staff had noticed a little cut between her toes so they think it might be an infection.
Its took a while to catch her as she went to lay it off,but she was finally locked in by the farm staff,and am going to the vets with her today and hope to get it sorted.

Have been giving her more hugs,and rubs than normal if that is even possible, so she is liking the extra attention but she hates being locked in again as she is so used to roaming the farm being a mouser.
Please wish her healing luck if anyone sees this!

And she has also lost her collar and the little pink heart that had her name and contact details engraved [not hers as she only speaks cattish obviously] -so need to get her a good new collar [no shit pets at home collar for madam] and another engraved thingy from the engraving machine at pets at home.

Lottie was taken to the vets today,and they said she has burnt the pads on her paw,and infection so she has a weeks supply of synulox and was given an injection of something [dont know what as its a staff that goes in with her],probably the synulox.
When got back to her house,she got out of the cage and was actually putting weight on her foot so the injection has done some good, she was also very hungry so she had a bowl of lamb Iams food [wet],and tablet was crumbled into it.
Going to leave letting her out to the guys on the farm,as didnt think it was right just yet.