Am struggling a lot at the moment-still very slowly going through the move to the new residential centre,some think am want to rush but that is the last thing am want.
Someone had brought the bed from previous home over to new home already,which did not want as had smashed part of it some time before was forced out of there,and needed a new one.
Staff who were taking am for arranged visits to the new place asked in advanced if it could be removed before the visit as am going to get confused and end up wanting to keep the bed once have seen it.
That is exactly what happened as it wasn't removed,so now am not getting a new one.
The mattress had really needed to go-it is stained with piss and coke and its all lumpy and noisy from the springs being bad.
After the visits,am go to see travellers ponies nearby,am get a frappachino before the visit,and end up getting it all over self or the staff if they are lucky.
The new special window that was put in is good,every house should have them.
am like the place a lot,one of the managers has bought am a patch work quilt with a cat on each patch and put it on the bed-not even the cats protection league sell things as great as that.
Am checked out the sensory room for the first time,which is awesome though not as big or filled as Vicky Roads or Anglo [NAS day centres] but they fund raised for those.
The pet chickens were awesome,the pet pony isn't based there but is close by.
Am found out they do life skills classes there for us which is also awesome,as am was removed from the last one at a college.
am still have not got the motability car yet,though nothing to do with high rate mobility as won that a long time ago.
Am have been keeping certain biased sainsburys staff busy of late with the blue badge due to the new rules they have brought in against BB fakes,and this is not at all because they believe only severe physically disabled users get blue badges as there is no way to even spot that from being inside a car,it is because a few of the old staff are biased against younger people using BBs.
Am found this out when an old man in a shit looking red car parked next to us in the disabled bays-he didn't park straight-it was like this: / but worse.
So much so he was taking over another bay as well,which would affect another car user who needs to get support to get in/out or a wheel chair in there.
Another thing am noticed,there was no blue badge on it,grey sainsburys guy [as will call him] was stood there propped up on a sweeping brush,watching all of this,the man rushed inside,grey sainsburys guy came over and instead of ticketing the old mans car,he came to the car am was in [with a male and female support staff] ,and started shouting about needing a blue badge to park there,then he went on about there being a fine for doing this,the blue badge was perfectly in the right place-he could not miss it,staff grabbed hold of it stuck it out the window to show him and he asked to see the photo side,-there's a clear BB fraud going on in the next car and he's there assuming only old people get blue badges,idiot.
Am found out off other users am know on a forum [who all have BBs for physical reasons] that they get the same treatment as well,though they have worser luck than self with age biased parking staff.
And finally,horsey related-am have been improving in riding as have been doing some jumping if it can be called that-Jasmine is jumping high over trotting poles often instead of lifting over,this is with no stirrups and a saddle pad-so it's like bareback-not fallen off yet once which is awesome,not sure if can use stirrups with that custom saddle pad as would need to for jumping fences/crosses.
Also,they have just rescued a new pony [all of the horses and ponies there are rescues they have built up],she had been full of worms,hooves bad,teeth bad,fleas and ribs sticking out when they got her but the yard owner said she's improved a lot in just a week,am wanted to take her home of course as she is a very friendly pony,cant believe people are treating horses badly, especially when they expect them to carry them or drive traps for them.
Sunday, 13 September 2009
Sunday, 2 August 2009
Last week
Last week,am went to the stables for usual riding lesson,and as usual,am stay with Jasmine for a bit and brush her,before lesson.
Had forgotten this was the school summer holiday,but that was quickly remembered upon entering.
Lots of children and teens running about and screaming with each other [and that was the helpers,the disabled riders were no problem].
So what happens when a:
*Autie
*hyperacutic
*epileptic
is thrown in the mix?
Answer:am hit the concrete floor in a seizure from where had been standing.
Am luckily was able to recover enough to still ride as the only thing that would stop self would be coma [even then,suppose could still do it in a coma,if were tied on].
Had legs held down due to them spazzing out from the paralysis [which was only slight-not full, otherwise some poor bastard would be lying on the floor with a damaged back from trying to lift am on Jasmine],and because of the seizure-had very little balance left.
But there was one thing am gained out of the whole experience,and have not told anyone this because: havent thought to,dont want to because would be stopped from riding and unless am unconcious am not going near hospital.
Am fairly certain the bit between hand and wrist is fractured,as have done it a few times,and its the same feel,must have landed on it or smashed it down on the concrete as fell.
Have now had the lesson moved to their quietest day,as am had not been able to get into a routine with lessons yet due to it having to depend on when the most suitable for-going-there-staff were on.
Had forgotten this was the school summer holiday,but that was quickly remembered upon entering.
Lots of children and teens running about and screaming with each other [and that was the helpers,the disabled riders were no problem].
So what happens when a:
*Autie
*hyperacutic
*epileptic
is thrown in the mix?
Answer:am hit the concrete floor in a seizure from where had been standing.
Am luckily was able to recover enough to still ride as the only thing that would stop self would be coma [even then,suppose could still do it in a coma,if were tied on].
Had legs held down due to them spazzing out from the paralysis [which was only slight-not full, otherwise some poor bastard would be lying on the floor with a damaged back from trying to lift am on Jasmine],and because of the seizure-had very little balance left.
But there was one thing am gained out of the whole experience,and have not told anyone this because: havent thought to,dont want to because would be stopped from riding and unless am unconcious am not going near hospital.
Am fairly certain the bit between hand and wrist is fractured,as have done it a few times,and its the same feel,must have landed on it or smashed it down on the concrete as fell.
Have now had the lesson moved to their quietest day,as am had not been able to get into a routine with lessons yet due to it having to depend on when the most suitable for-going-there-staff were on.
Friday, 31 July 2009
Cannot think of a title so this is it
Have been around even less lately to reply to messages on here or anywhere else, because of some very big and tiring things going on at the moment,am have even less com/interactive energy left to reply to messages [though have read them],and had left WP some time ago mostly due to this,going to try and get back to messages as soon as possible,sorry for not replying yet.
Am very close to getting the motability car finally ordered,the appointee problem which was holding it up looks sorted-so should be getting it as soon as possible -getting a v/pale blue large [but not the grand version] citroen picasso,staff said to get lowest engine size for petrol reasons,but have heard off someone who owns one and knows them well that the lowest engine size struggles to pull a picasso [any expert comments here on them would be welcome].
The new residential home is finally being sorted,slowly,this is where all the big and tiring problems are coming from,due to SS holding back on funding for adaptions.
Am have to spend some time visiting there,once they put a sound proofed window soon,to see if it is enough against the noise,but it is hard trying not to believe it will work on its own without sound proofing the hole room,because they dont seem to understand the overload that am get through an entire building,they don't understand either that the hyperacusis side of it had got worse to a profound level,it feels like people think it cant get worse,and am told well this noise wasnt as bad to self a long while ago,so why are finding it a problem now,why do people find it easy to understand those who have the opposite problem-hearing DIFFICULTY,also known as deafness,hearing impairment,hard of hearing etc.-why do people find it easy to accept that hearing can get lost easily enough,but not get worse the other way.
Am lucky that one of the support staff am have from the NAS now has hyperacusis,and she understood before,but she understands even more now what its like,she gets the constant build up overload headaches with it to,so am so glad she can at the same time prove to others that am not a painkiller addict [that being something one nasty support staff had got am labelled as a long time ago because she took needing more pain killers than other people to mean =addict].
And one last thing,am may have been doing less writing on computer,but have been building a animal photo gallery,made up of mostly own photos-but some taken by dad and sister as well,am made it because am find pictures a visual therapy,especially of cats-so for anyone else affected in the same way,here's the link:
http://www.flickr.com/photos/because_theyre_great/sets/
Just in case a certain BSL expert is reading this,the photos that asked to see last week of horse riding are on there.
Am very close to getting the motability car finally ordered,the appointee problem which was holding it up looks sorted-so should be getting it as soon as possible -getting a v/pale blue large [but not the grand version] citroen picasso,staff said to get lowest engine size for petrol reasons,but have heard off someone who owns one and knows them well that the lowest engine size struggles to pull a picasso [any expert comments here on them would be welcome].
The new residential home is finally being sorted,slowly,this is where all the big and tiring problems are coming from,due to SS holding back on funding for adaptions.
Am have to spend some time visiting there,once they put a sound proofed window soon,to see if it is enough against the noise,but it is hard trying not to believe it will work on its own without sound proofing the hole room,because they dont seem to understand the overload that am get through an entire building,they don't understand either that the hyperacusis side of it had got worse to a profound level,it feels like people think it cant get worse,and am told well this noise wasnt as bad to self a long while ago,so why are finding it a problem now,why do people find it easy to understand those who have the opposite problem-hearing DIFFICULTY,also known as deafness,hearing impairment,hard of hearing etc.-why do people find it easy to accept that hearing can get lost easily enough,but not get worse the other way.
Am lucky that one of the support staff am have from the NAS now has hyperacusis,and she understood before,but she understands even more now what its like,she gets the constant build up overload headaches with it to,so am so glad she can at the same time prove to others that am not a painkiller addict [that being something one nasty support staff had got am labelled as a long time ago because she took needing more pain killers than other people to mean =addict].
And one last thing,am may have been doing less writing on computer,but have been building a animal photo gallery,made up of mostly own photos-but some taken by dad and sister as well,am made it because am find pictures a visual therapy,especially of cats-so for anyone else affected in the same way,here's the link:
http://www.flickr.com/photos/because_theyre_great/sets/
Just in case a certain BSL expert is reading this,the photos that asked to see last week of horse riding are on there.
Friday, 17 July 2009
Horses....and stuff
Yesterday had gone to Robinsons,in Wigan [near Haydock race course/Liverpool] ,which is a superstore that sells all types of horsey stuff and they even sell horses/ ponies through adverts all over a wall.
Could have bought the lot given the chance,but instead,came out with these:
A pair of brown Justtogs steel toe capped jodphur boots,as do not have any suitable riding shoes/boots:
A charles & owen 'young rider' skull cap,which had the black silk free with it,but am going to be going back for a pale blue/navy silk they sell,dad did not give staff enough money.
Have always had riding hats from the 'young rider' range before,but have always found they never fitted well as head is not the same shape.
Have always had riding hats from the 'young rider' range before,but have always found they never fitted well as head is not the same shape.
So today was riding day.
Am got out to Millers Nook and as soon as got into the car park,it started to rain...very heavy.
And it did not stop.
The stables currently only has an outdoor arena,so in the end,staff canceled it for this week because am not able to cope with the feel of water dropping/flowing on skin,but as usual the stable staff were extremely understanding.
Went for a drive instead,around bolton,wigan and all that area.
A ambulance had been stuck behind us for ages,and there was only both lanes for cars going either way to use which were moving very slowly,so what seems to always happen-happened-the ambulance suddenly flicks it's siren on [when it is right next to the car,and it isn't going to get anywhere by doing that because of the road and traffic],and sent am into a meltdown.
Not only that had only just opened a can of redbull so the thing shot straight to the floor-along with self,and spilt everywhere [that bit-not self].
The meltdown had been mild at worst-so recovered a lot quicker than usually do-there was no paralysis in legs.
...There's always next week,hoping weather will behave itself.
A ambulance had been stuck behind us for ages,and there was only both lanes for cars going either way to use which were moving very slowly,so what seems to always happen-happened-the ambulance suddenly flicks it's siren on [when it is right next to the car,and it isn't going to get anywhere by doing that because of the road and traffic],and sent am into a meltdown.
Not only that had only just opened a can of redbull so the thing shot straight to the floor-along with self,and spilt everywhere [that bit-not self].
The meltdown had been mild at worst-so recovered a lot quicker than usually do-there was no paralysis in legs.
...There's always next week,hoping weather will behave itself.
Sunday, 12 July 2009
PECS
A delayed post but had posted about this on the usual forum...
Some time ago,am was taken to the NAS HQ to use specialist PECS software they have,am had a very limited supply of PECS and wanted more.
The staff entered all the words they know am would use [all the ones am tried entering were too naughty for the software and had no pictures available,but it's not like 'poo' and 'fart' are that bad] -PECS pictures would come up for each one.
One of the staff came up with the idea of joining another picture onto one which made a sort of naughty word.
They then laminated them on another day,and brought them to am.
Am started trying to cut self with them to see if they could cut flesh,and then had them taken back straight away where she then rounded all the edges so theyre a bit wussy,typical first thing think of doing was 'does this cut through flesh'.
She mentioned a bum bag being a good thing to get to carry them in,and had had no idea where to get one,neither do understand why it isnt called fanny pack here when people wear them over that,not their arse end.
Turned out that the great- sports direct sells them,and think had gone in there for something else but found a good fanny bag.
Here's some photos:
The top pocket,which am use for keeping the most needed PECS,
spare ear plugs and painkiller stash though don't have any in it at moment:
Some time ago,am was taken to the NAS HQ to use specialist PECS software they have,am had a very limited supply of PECS and wanted more.
The staff entered all the words they know am would use [all the ones am tried entering were too naughty for the software and had no pictures available,but it's not like 'poo' and 'fart' are that bad] -PECS pictures would come up for each one.
One of the staff came up with the idea of joining another picture onto one which made a sort of naughty word.
They then laminated them on another day,and brought them to am.
Am started trying to cut self with them to see if they could cut flesh,and then had them taken back straight away where she then rounded all the edges so theyre a bit wussy,typical first thing think of doing was 'does this cut through flesh'.
She mentioned a bum bag being a good thing to get to carry them in,and had had no idea where to get one,neither do understand why it isnt called fanny pack here when people wear them over that,not their arse end.
Turned out that the great- sports direct sells them,and think had gone in there for something else but found a good fanny bag.
Here's some photos:
The fanny bag-there's a pocket on top,in middle,and at the bottom,and
have split all PECS into different pockets in order of need:
have split all PECS into different pockets in order of need:
The top pocket,which am use for keeping the most needed PECS,
spare ear plugs and painkiller stash though don't have any in it at moment:
And these are own favourites,should be no surprise.
'Kittens' was used either because staff forgot 'cats' or software
didn't have 'cats' but it was close enough,'coffee shop' is
favourite as like to go there for mocha-
caramel frappachinos as often as possible,did
not know what 'up yours' meant but staff said it was like a
swear word so that became favourite, 'shut up' as it was another to
add to the naughty pile, and 'rat' because
they're great.
'Kittens' was used either because staff forgot 'cats' or software
didn't have 'cats' but it was close enough,'coffee shop' is
favourite as like to go there for mocha-
caramel frappachinos as often as possible,did
not know what 'up yours' meant but staff said it was like a
swear word so that became favourite, 'shut up' as it was another to
add to the naughty pile, and 'rat' because
they're great.
Horse riding
Am officially back in the saddle,and back doing the greatest therapy of them all,and it's all thanks to thieving bastards on crimewatch UK.
Am had left RDA [riding for the disabled association] riding some years ago,due to being moved to another area,it was an RDA group within a mainstream riding centre/school/whatever they're called,and it was quite a high class place with one of it's owners [also the man who was lead around by] having worked with John Whitaker,and his sons a championship show jumper as well.
But one of the main staff there who sorted the RDA sessions and ponies/horses for it wasn't very nice and treated am and the others had gone with as non human,none of us refered to by names,am was 'the ginger one' [am white-not ginger,but have ginger hair],the fellow autie lady from own home was refered to as 'the black one' [having black skin and hair] and the rest who sometimes came along from the local day centre were equally dehumanised.
Luckily she didn't come out on the rides [hacks,not lessons].
Recently,whilst channel skipping in the morning,there was a crimewatch UK roadshow programme on the BBC which reports big crimes to try and catch the people who did them,and a bit of it was about a stables for disabled people having almost all it's specialist tack stolen one night,a stables called millers nook-here's what happened:
http://www.horseandhound.co.uk/news/397/278780.html
Am went to visit the place first and found out a bit more about it,it's a non mainstream charity status RDA stables and has a huge outdoor arena.
The day came to have a lesson there.
Am went with two support staff but they were not the usual staff for that day-as only want to go with the horse expert staff.
The staff and helpers there are great,and understanding even if they don't really know some of the problems.
Am was able to be with the pony was going to be riding whilst she was being groomed and tacked up-she's a skewbald pony called Jasmine.
Jasmine was tacked up with a special sensory saddle-it's a special fleece soft saddle for riding as close to bareback as can get,it also helps to better riding ability and does not use stirrups [these are the type that were stolen].
The arena had panels along the fences with letters as well as pictures on [used for knowing where to go] which am found helped so much as letters are a struggle to process but simple pictures are so much easier.
Am had a helper,and instructor,and as the lesson went on,was called a natural at it and was quite advanced,nice to know have got a skill am very good at,some RDA riders are so good they do mainstream olympics.
At the end of the lesson am gave Jasmine lots of pats and hugs for carrying am around,got off,went to Middlebrook and got a mocha-caramel frappachino from starbucks and went home.
Am had noticed a lot of improvements for that day-on the car ride to the stables am was having to wear earplugs and ear defenders on the motorway there because of the noise,but on the way back,it was like hearing had been calmed as well as self-and did not need to use them constantly.
Unfortunately for the staff,am was interacting with them more,and didn't get any tics till night time.
Am had a great time and got so much out of it,am really recommend everyone out there with a disability at any severity check out RDA groups or centres,some of them do cart/trap driving if are unable to ride for whatever reason.
Am getting a new hat this week as old one is falling apart [though not getting rid of it]-it's going to be a jockey skull and will be getting a silk for it,and some jodphur boots.
Am also thinking about fundraising in some form for Millers Nook.
Am had left RDA [riding for the disabled association] riding some years ago,due to being moved to another area,it was an RDA group within a mainstream riding centre/school/whatever they're called,and it was quite a high class place with one of it's owners [also the man who was lead around by] having worked with John Whitaker,and his sons a championship show jumper as well.
But one of the main staff there who sorted the RDA sessions and ponies/horses for it wasn't very nice and treated am and the others had gone with as non human,none of us refered to by names,am was 'the ginger one' [am white-not ginger,but have ginger hair],the fellow autie lady from own home was refered to as 'the black one' [having black skin and hair] and the rest who sometimes came along from the local day centre were equally dehumanised.
Luckily she didn't come out on the rides [hacks,not lessons].
Recently,whilst channel skipping in the morning,there was a crimewatch UK roadshow programme on the BBC which reports big crimes to try and catch the people who did them,and a bit of it was about a stables for disabled people having almost all it's specialist tack stolen one night,a stables called millers nook-here's what happened:
http://www.horseandhound.co.uk/news/397/278780.html
Am went to visit the place first and found out a bit more about it,it's a non mainstream charity status RDA stables and has a huge outdoor arena.
The day came to have a lesson there.
Am went with two support staff but they were not the usual staff for that day-as only want to go with the horse expert staff.
The staff and helpers there are great,and understanding even if they don't really know some of the problems.
Am was able to be with the pony was going to be riding whilst she was being groomed and tacked up-she's a skewbald pony called Jasmine.
Jasmine was tacked up with a special sensory saddle-it's a special fleece soft saddle for riding as close to bareback as can get,it also helps to better riding ability and does not use stirrups [these are the type that were stolen].
The arena had panels along the fences with letters as well as pictures on [used for knowing where to go] which am found helped so much as letters are a struggle to process but simple pictures are so much easier.
Am had a helper,and instructor,and as the lesson went on,was called a natural at it and was quite advanced,nice to know have got a skill am very good at,some RDA riders are so good they do mainstream olympics.
At the end of the lesson am gave Jasmine lots of pats and hugs for carrying am around,got off,went to Middlebrook and got a mocha-caramel frappachino from starbucks and went home.
Am had noticed a lot of improvements for that day-on the car ride to the stables am was having to wear earplugs and ear defenders on the motorway there because of the noise,but on the way back,it was like hearing had been calmed as well as self-and did not need to use them constantly.
Unfortunately for the staff,am was interacting with them more,and didn't get any tics till night time.
Am had a great time and got so much out of it,am really recommend everyone out there with a disability at any severity check out RDA groups or centres,some of them do cart/trap driving if are unable to ride for whatever reason.
Am getting a new hat this week as old one is falling apart [though not getting rid of it]-it's going to be a jockey skull and will be getting a silk for it,and some jodphur boots.
Am also thinking about fundraising in some form for Millers Nook.
Sunday, 17 May 2009
May update
Haven't blogged in ages.
If not guessed from title already,this is may,unrelated to post-Scuzz [tv channel] is showing Metallica:from the beginning...is good...well not all of it,but some of it.
anyway.....
Have not been back home [as in res. home,not family home] for a long time now,the decorators had been into decorate when am was at family home and they changed the colours of the entire inside building,so have been unable to get through the door way even.
People have thought am being everything from fussy to,controlling,to lazy over it,and have had nothing but mental V signs in head for them,most do not seem to understand how changing things mean nothing to them,but means a huge amount to KoR.
Dad is desperate to get am back to residential care,as he cannot cope again when NAS staff are not here,mum is drunk every day,and trying to steal from the money dad gets,as he has to leave it here for staff to pick up when am going out with them...just like old times.
Am fighting with him a lot [also like old times],he is extremely controlling and gets abusive when anything doesn't happen his way,and he goes and tells Rach [KoRs sister,not his] that am have attacked him,broke a door or had a meltdown etc...without saying what led to it,and then am get a load of crap off her when next see her or over MSN making am out to be an evil burden on him.
He's told her he's fed up of am being here,am feel exactly the same thing back....am ended up physically fighting him today after he set am off saying the very last things needed to hear when was in extreme pain from neighbours banging with hammers and using power tools next door.
Then had gone up stairs and started doing what had tried to keep away for some time now,broke open a razor and got some blade out,started cutting again-on left arm and hand,and because am do not feel pain and had not done it for a while,had gone a bit too deep because it was spilling down onto grey trousers.
Own social worker came last monday to have a meeting with dad about how far along the move to Fairfields was,it's all sorted now,apart from fairfield staff needing to get trained with am,and they wanted to do it whilst am at the other home,so the NAS support staff have been bringing am every day to try and get used to the building changes,but cannot even get near the door,even though am trying very hard.
There's also the problem of the amount of time it would take to actually get used to being there again [if possible],because by the time thats done would need to be getting used to another new building at fairfields again.
Social worker is trying to see if Fairfields will just allow visits instead-eg,they can shadow the NAS staff when am out with them,or am can go there,and can slowly get used to it as well.
Also,still waiting to get the motability car,it's now decided on a one point six vauxhall zafira exclusiv,there is no pale blue option though which isnt fair.
If not guessed from title already,this is may,unrelated to post-Scuzz [tv channel] is showing Metallica:from the beginning...is good...well not all of it,but some of it.
anyway.....
Have not been back home [as in res. home,not family home] for a long time now,the decorators had been into decorate when am was at family home and they changed the colours of the entire inside building,so have been unable to get through the door way even.
People have thought am being everything from fussy to,controlling,to lazy over it,and have had nothing but mental V signs in head for them,most do not seem to understand how changing things mean nothing to them,but means a huge amount to KoR.
Dad is desperate to get am back to residential care,as he cannot cope again when NAS staff are not here,mum is drunk every day,and trying to steal from the money dad gets,as he has to leave it here for staff to pick up when am going out with them...just like old times.
Am fighting with him a lot [also like old times],he is extremely controlling and gets abusive when anything doesn't happen his way,and he goes and tells Rach [KoRs sister,not his] that am have attacked him,broke a door or had a meltdown etc...without saying what led to it,and then am get a load of crap off her when next see her or over MSN making am out to be an evil burden on him.
He's told her he's fed up of am being here,am feel exactly the same thing back....am ended up physically fighting him today after he set am off saying the very last things needed to hear when was in extreme pain from neighbours banging with hammers and using power tools next door.
Then had gone up stairs and started doing what had tried to keep away for some time now,broke open a razor and got some blade out,started cutting again-on left arm and hand,and because am do not feel pain and had not done it for a while,had gone a bit too deep because it was spilling down onto grey trousers.
Own social worker came last monday to have a meeting with dad about how far along the move to Fairfields was,it's all sorted now,apart from fairfield staff needing to get trained with am,and they wanted to do it whilst am at the other home,so the NAS support staff have been bringing am every day to try and get used to the building changes,but cannot even get near the door,even though am trying very hard.
There's also the problem of the amount of time it would take to actually get used to being there again [if possible],because by the time thats done would need to be getting used to another new building at fairfields again.
Social worker is trying to see if Fairfields will just allow visits instead-eg,they can shadow the NAS staff when am out with them,or am can go there,and can slowly get used to it as well.
Also,still waiting to get the motability car,it's now decided on a one point six vauxhall zafira exclusiv,there is no pale blue option though which isnt fair.
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