Perambulator,Mikomi,velodog,Danielismyname,886,Followthereaper90 and larsenjw92286,
thanks for replying!
Perambulator,
am have never been tested for allergies-could it be?
have a very restricted diet,mostly am have liquid and not solid,often have complan milkshakes in place of solid food because of sickness from the meltdowns and sensory overload-complan is gfcf,and full of only the needed stuff to make up a meal,am use it with cravendale milk-can milk cause problems?
Thanks Mikomi,
would be great if they finally listen to these problems as they never did at any of the last places [they all share the same staff,managers and specialists].
velodog,
they;'re not nice,am have had physical abuse off them as well and they got away with it as they said am had done it to self,or it was an accident.
Danielismyname,
am agrree completely,it would be great if a lot of the 'extreme deniers' were to experience it in this way so they could see what it's like,with the stuff that is known about autism today there is no excuse for ignoring a autistics sensory needs,especially by those who have had a lot of training in autism.
-will post the results when next see the neuro,no idea how long it's going to be but got that stay in hospital quickly,hope it's just as quick.
886,
unfortunately no cats live at the home apart from smudge downstairs as they keep saying david doesnt like cats,GFB owns some humans nearby so he is getting fed off them,he also runs into the downstairs part when the door is open to steal smudges food,Biscuit,Goldie etc live with parents.
thanks larsenjw92286!
Followthereaper90,
am agree,they get away with a lot more with people who have no family or outside support who can speak for them.
am know of one resident in another res. home in this service and borough who had LD and severe epilepsy,the council put him with agency staff rather than regular/council staff [from a crap agency called primetime] even though he shouldnt be with agency,if he had outsiders complaining for him he would have had the right staff,his agency staff spent most of the time using her phone texting and speaking rather than helping him [this is common with a lot of agency staff],when she got him in the bath,and her phone rang,she went out to answer it even though his guidelines say to never leave him on his own because of his seizures,when she got back he was lying under the water having had a seizure,and was dead,this was kept quiet and never made public,it got listed under 'accident'-the only people who knew about it are the council and residents in the LD service.
a lot goes on in residential care,but there's not enough done to keep bad ones from working as staff.
too many 'accidents'.
---
A few good things happened at hospital,one of them was favourite home staff came in-Leanne.
she kept farting,am had some adidas deodorant,and Leanne was turned around,am sprayed it down her arse thinking it;ll make her farts smell the same,didn't know the deodorant is the type to make a white mark,and she had this very big white line outlining where the middle of her arse is-on navy jeans which showed up well.
she went around the hospital with am scratching the middle of her arse a lot to try and remove the mark,other home staff thought she had worms.
and ended up having two severe meltdowns on thursday night,one of them forced-am refused to put earplugs and eardefenders on,to make sure that would end up going into one [it is difficult to do that,it#s having to override a lifetime of the opposite],and the next one happened just as was trying to go to sleep,a crippling siren/alarm went off outside,it set off probably the worst one that had there,when am eventually came out of it and vision returned,noticed was lying on a special thin matress type thing which is used to winch people on to beds.
am wasn't able to move,the nurses came in and said am have had a severe one [it had ripped all the wires off head and these things were superglued and taped on],they said they were going to winch am onto the bed [am lose the use of legs after having a lot of meltdowns together,and hands have no strength but do seem connected with brain],and the night staff said just leave her there,she'll get back on the bed later on when she's got the feeling in her legs back.
the nurses argued with her,said am should be in the bed,away from the walls and anything else solid for the obvious reasons [not so obvious to the clueless nightstaff],and couldn't believe what the night staff said to that- 'no,she can stay on the floor as she has to do this herself,she'll get on the bed herself later'.
am could not believe she was saying this,she put some stupid belief above being safe and comfortable-am had no function in legs [they disconnect from brain after having multiple meltdowns close together] and very light movment but no strength in hands-it can go all day before legs reconnect to brain again,and was definitely not in any state to lift self to any level.
the nurses came in later again and asked am [rather than night staff] if am wanted to be put in bed,that was a definite yes,they got am into bed,and put metal sides on it-they said am should have had them from the start as it's hospital policy for anyone who is high risk of falling out of bed,staff at home apparently did not give them the information,their excuse for not doing anything about this-they said to the nurses 'she likes lying on the floor',cannot remember ever being asked that.
head is really cut up from having to have electrodes reattached and being headbanged so often,the neuro said he's never seen worse damage,the worst he's seen is little blisters,though it isnt a problem for am,it seems to be worse for those that can see it.
when am got back home yesterday,am felt very sick,the doctors had given am tablets to stop the long sickness from meltdowns [am going to see if gp will prescribe them] but didn't have any for home,was also supposed to go to the trafford centre to get the new grand theft auto game when got back but the sickness/tiredness changed that.
found out vicky was put on to work with am for the evening [she's one of the ones mentioned here],how much of an insult is that? just get out of hospital having gone through a crap experience and get put with the one who everyone knows what am think of her.
am typed to staff that am want the main manager,so am can tell her about not wanting to be with vicky or wendy [the other really nasty one] or live there,she saw am,and said wendy and vicky are great..she cant do anything about it,she cant change the staff team rotas because it messes things up for all of them,which is crap because wendy and vicky are constantly swapping around who works with who in the length of one day [another thing that sets am off and they know it does],she said they are actually looking for a specialist autism with high complex needs res. home,rather than one for general /any disability,but that they cannot rush it,and its going to take a long time to find a suitable home that is close enough to Biscuit,Sam etc.
she said she cannot do anything at all till the [LD]CPN am have comes back from her holiday [not for weeks yet],she's not allowed to change anything without CPN say,am did tell her am wanted to die to get away from them,but that made no difference.
so,staff took am to old home/family home,to stay rather than stay back there and be made worse by Vicky,most of them understand because they dont like her abusiveness either.
dont know what going to do when go back,well,am do know what am want to do,which involves a foot and vickys' and wendys arses,but wont,both of them would like having one extra thing to use against am.
_________________
>severely autistic.
>>the residential autist;
http://theresidentialautist.blogspot.co.uk
blogging from the view of an ex institutionalised autism/ID activist now in community care.
>>>help to keep bullying off our community,report it!
30 Apr 2008, 2:58 pm
Unfortunately the rest of your post was not. There's a lot I don't know about Autism, especially LFA. Your Blog has helped me in getting a handle on that even though I still don't know much. If I had not read your blog and was to meet someone mostly non verbal like yourself, I would have made some assumptions that would not be correct. Thanks for doing that. Keep us apprised on how well your head heals up. Talk to you later KOR.
