A while back [it was either in march,may or april],am had to stay in hospital for a two night EEG test stay,and spoke on here later on,when staff got the results letter he sent to the GP,which stated it had showed part of the brain [right mid temporal] as abnormal during some meltdowns.
Today was the follow up appointment with Dr Rog,the best neuro they've got at hope hospital.
Am went with Dawn [from NAS],Neil [other support worker] and Anna [disability nurse].
When am got to the neuro part [that hospital is very very big on many different floors,and like a maze],it was overload from the people noise-a nurse said am and the staff could go in one of the doctors offices whilst waiting for the doctor,am thought that was great they offered that,though when am had to be an inpatient there am got nothing but nice treatment there to.
Dr Rog said that am definitely having full seizures during meltdowns-that was what the abnormality is-but not in all of them.
He said some of them are not epilepsy based/seizures,and classed those ones under [behavioral] meltdowns, though understands am do not have any control and often no awareness in them.
He also said migraines could be making the sensory problems worse,as am get a lot of them from meltdowns and headbanging,but staff gave him the idea that the migraines were random,rather than mostly happening after the meltdowns,head banging etc.
So he's adding Amytriptilyne? [not sure if spelt that right] onto the drugs pile,and he has got the staff some forms to fill in which type of meltdown it was,if it was a seizure,if am rocking 'normally' etc.
Am found out during the appointment thingy from staff who had all the daily reports and ABCs,am have had ten meltdowns this week [from tuesday to friday,as came back from parents on tuesday] but they're not sure why.............am know why,the noise has increased around living in this home -with three neighbours next to the home all deciding to knock down part of their houses and redo them-angle grinders,saws,lots of other different tools-from morning till night,weeks on end,the lady down stairs banging her draws and wardrobe-from morning till night,the CPer downstairs-playing his music on full volume/full bass,Marie up here shouting and banging every day again,how anyone could miss those easy setoffs,even deaf people?
Am also going to be getting a few more 'goodies' off the OT thanks to him,which will help life a lot.
Am glad they have finally made the epilepsy official,as am have been told-on off for years,it is epilepsy,it isn't epilepsy,it is epilepsy.....it was only because am had the long stay in hospital am managed to get diagnosed,as those short EEG tests are shit-they only work if happen to have a meltdown then,and am definitely not going to be having one whilst sat on a chair,in a nice,very quiet slightly darkened room.
Friday, 29 August 2008
Sunday, 24 August 2008
Autist guides-DLA [A UK benefit]
This guide is just a basic understanding of DLA,the technical stuff is here:
Click here
DLA [Disability Living Allowance] is the disability benefit designed to pay for all the things that disability needs,it is made up of different parts/component.
They are supposed to look at the impairments,before the labels-which also means those who are not diagnosed with a disability can get DLA as long as the problems have been noted by doctors.
This also means that just because some is diagnosed with autism/as/pddnos,it doesn't give them automatic right to DLA,as someone may have an ASD but not be impaired enough to be classed as disabled and get DLA.
There is the care component-which has Low/Middle/High rates,and there is the mobility component which has only low/high.
Under care,high rate is given to those with the most severe/life affecting impairments which requires full night and day care,middle rate is given to those who do not need night and day care,and low rate is for those who have less impairment still.
The mobility component does not mean only those who have problems with walking physically,
but for those who might have problems getting out and about for any reason related to their impairments.
Low rate mobility covers from mild to severe impairment because there is no middle rate.
High rate mobility covers profound impairment,and is very very difficult to get on even though it's supposed to cover non physical problems,they're very biased if are not a wheel chair user.
If think needs are profound,and want to try for HRM,get as much backup from specialists,
paramedic reports [if have any that are related to the impairments]the NAS-if a service user of them,social services-if a service user of them,support staff,doctors etc-as many letters can get as possible.
It took staff three refusals and a huge amount of backup to get am on HRM-the NAS support staff and bosses had added to it,they said they do not understand Autism,and unless a wheel chair user,they make it very difficult to get it even if own needs are profound.
Autists who have severe enough impairment, may want to look at getting:
*Motability
-A service for those with high rate mobility,they provide a car [chosen by the user] and insurance [can be open insurance for support staff to be the drivers,or whoever are driven by]-the user pays only partly for it using some or all of their HRM component,depending on how good the car was.
They will change it for a new car every three years.
*Blue Badge parking permit
Quite a lot of Autist difficulties and issues can make a blue badge parking permit a life saver,or at the very least-safe from injury,definitely worth having if need it.
Possible to get without high rate mobility.
Click here
DLA [Disability Living Allowance] is the disability benefit designed to pay for all the things that disability needs,it is made up of different parts/component.
They are supposed to look at the impairments,before the labels-which also means those who are not diagnosed with a disability can get DLA as long as the problems have been noted by doctors.
This also means that just because some is diagnosed with autism/as/pddnos,it doesn't give them automatic right to DLA,as someone may have an ASD but not be impaired enough to be classed as disabled and get DLA.
There is the care component-which has Low/Middle/High rates,and there is the mobility component which has only low/high.
Under care,high rate is given to those with the most severe/life affecting impairments which requires full night and day care,middle rate is given to those who do not need night and day care,and low rate is for those who have less impairment still.
The mobility component does not mean only those who have problems with walking physically,
but for those who might have problems getting out and about for any reason related to their impairments.
Low rate mobility covers from mild to severe impairment because there is no middle rate.
High rate mobility covers profound impairment,and is very very difficult to get on even though it's supposed to cover non physical problems,they're very biased if are not a wheel chair user.
If think needs are profound,and want to try for HRM,get as much backup from specialists,
paramedic reports [if have any that are related to the impairments]the NAS-if a service user of them,social services-if a service user of them,support staff,doctors etc-as many letters can get as possible.
It took staff three refusals and a huge amount of backup to get am on HRM-the NAS support staff and bosses had added to it,they said they do not understand Autism,and unless a wheel chair user,they make it very difficult to get it even if own needs are profound.
Autists who have severe enough impairment, may want to look at getting:
*Motability
-A service for those with high rate mobility,they provide a car [chosen by the user] and insurance [can be open insurance for support staff to be the drivers,or whoever are driven by]-the user pays only partly for it using some or all of their HRM component,depending on how good the car was.
They will change it for a new car every three years.
*Blue Badge parking permit
Quite a lot of Autist difficulties and issues can make a blue badge parking permit a life saver,or at the very least-safe from injury,definitely worth having if need it.
Possible to get without high rate mobility.
Autist guides-different support available for UK
Am writing a few basic guides,designed to be autism/as/pddnos friendly.
This guide is about the support services am know of [and am a service user of-apart from creative support].
A common thing on ASD forums written by UK users is 'theres no support for autistics' or those who automatically tell undiagnosed adults not to bother getting diagnosed because there's no help at the end.
This is not true,do not believe it,there is a lot of help out there,but it isn't automatically given,a care assessment is needed first.
First,am recommend getting a social worker,they give access to so many things and fight to get the things that need,some services will not help if do not have a social worker because of funding needed.
Aspies or Autists who do not have what the SS call 'personal care needs' may struggle with this,in the learning disability team-most councils have strict IQ and functioning related criteria.
Get the council contacted and ask for a community care assessment,they use this to judge whether are in enough need for help or not.
Autists who are refused a social worker within the learning disabilities team can try the mental health team if they have a mental health condition as well as their ASD.
The assessment must be done by someone who understands the main disability/ies that have got.
Within the learning disabilities team,if are found to need them,they will give self a speech therapist,pysch.,occupational therapist,behavioral specialist,CPN etc.
Am find them much more understanding under the LD team rather than through the way everyone else gets them.
One main organisation that helps Autists on all functioning levels in the UK is The National Autistic Society.
They have many different forms of support,including befriending,outreach support-full support in own home or residential care depending on care assessment,NAS residential homes,NAS day centres,NAS social clubs,NAS assessment centres and schools,their own job service,advocacy etc.
There is a lot of support offered,but a lot of it requires funding,if are unable to get help from social services and want to use an NAS service that needs funding,speak to them about it as they may offer ways around it or get the funding on behalf of self.
Autists can also get support from Autism Initiatives and Mencap.
Mencap have a lot of different types of support like NAS-but they are not autism specialised,they have day centres with great adult swings that are impossible to fall off/other garden stuff, and for those that like loud music-things like discos.
Autism Initiatives is the same sort of organisation- specialised for Autists but,it's newer,and is limited to certain parts of the country for most of their types of support.
An organisation who have group homes and outreach support,am can think of that helps Autists would be Creative Support.
They are more into mental illness,than developmental disabilities,but sister used to work for them in their MH projects and said they have quite a few homes just for people with learning difficulties and/or ASDs.
Those without a social worker can apply for a place,but the company gets involved with them on behalf of the client.
This is something some Autists who haven't been able to get a social worker may want to try.
This guide is about the support services am know of [and am a service user of-apart from creative support].
A common thing on ASD forums written by UK users is 'theres no support for autistics' or those who automatically tell undiagnosed adults not to bother getting diagnosed because there's no help at the end.
This is not true,do not believe it,there is a lot of help out there,but it isn't automatically given,a care assessment is needed first.
First,am recommend getting a social worker,they give access to so many things and fight to get the things that need,some services will not help if do not have a social worker because of funding needed.
Aspies or Autists who do not have what the SS call 'personal care needs' may struggle with this,in the learning disability team-most councils have strict IQ and functioning related criteria.
Get the council contacted and ask for a community care assessment,they use this to judge whether are in enough need for help or not.
Autists who are refused a social worker within the learning disabilities team can try the mental health team if they have a mental health condition as well as their ASD.
The assessment must be done by someone who understands the main disability/ies that have got.
Within the learning disabilities team,if are found to need them,they will give self a speech therapist,pysch.,occupational therapist,behavioral specialist,CPN etc.
Am find them much more understanding under the LD team rather than through the way everyone else gets them.
One main organisation that helps Autists on all functioning levels in the UK is The National Autistic Society.
They have many different forms of support,including befriending,outreach support-full support in own home or residential care depending on care assessment,NAS residential homes,NAS day centres,NAS social clubs,NAS assessment centres and schools,their own job service,advocacy etc.
There is a lot of support offered,but a lot of it requires funding,if are unable to get help from social services and want to use an NAS service that needs funding,speak to them about it as they may offer ways around it or get the funding on behalf of self.
Autists can also get support from Autism Initiatives and Mencap.
Mencap have a lot of different types of support like NAS-but they are not autism specialised,they have day centres with great adult swings that are impossible to fall off/other garden stuff, and for those that like loud music-things like discos.
Autism Initiatives is the same sort of organisation- specialised for Autists but,it's newer,and is limited to certain parts of the country for most of their types of support.
An organisation who have group homes and outreach support,am can think of that helps Autists would be Creative Support.
They are more into mental illness,than developmental disabilities,but sister used to work for them in their MH projects and said they have quite a few homes just for people with learning difficulties and/or ASDs.
Those without a social worker can apply for a place,but the company gets involved with them on behalf of the client.
This is something some Autists who haven't been able to get a social worker may want to try.
Monday, 18 August 2008
Moving homes...........again
Have written about this on WP before...but,am going to be moving back to the old institution am first moved out to-in two weeks if the manager has her way.
The council/learning disability services shut down the institution a long while ago [which got am moved out of it] and have since been in two community based residential homes,but they haven't been able to cope with am and am haven't been able to cope with them,so they have been looking for a better specialist place,they said it's going to take a long time and the NAS have forced the council into doing something about it instead of letting am suffer at current home.
So they have opened up the institution again just for am,no other residents will be living there although Manchesters' respite unit is still based there.
Am will be living in the secure unit again,most of the staffing will be usual specialist/autism staff as well as LD residential staff who work with am here who already know and like.
Am will be having the same waking night staff as well-so no changes in staff,though have been told am wont be having most favourite staff from here.
They know am not moving in unless they get the sky broadband installed there as every home have been in now,they've waited months before doing it,am not letting them get away with it again as it is the only way at communicating with family and having a connection with outside world.
The place is massive,it's like having a bungalow mansion all to self [and all the managers,and the respite users,but they're in a different wing and managers are in an upstairs part].
Am going to see about making the old sensory room back into what it was as well,and will be seeing about getting a cat!
The council/learning disability services shut down the institution a long while ago [which got am moved out of it] and have since been in two community based residential homes,but they haven't been able to cope with am and am haven't been able to cope with them,so they have been looking for a better specialist place,they said it's going to take a long time and the NAS have forced the council into doing something about it instead of letting am suffer at current home.
So they have opened up the institution again just for am,no other residents will be living there although Manchesters' respite unit is still based there.
Am will be living in the secure unit again,most of the staffing will be usual specialist/autism staff as well as LD residential staff who work with am here who already know and like.
Am will be having the same waking night staff as well-so no changes in staff,though have been told am wont be having most favourite staff from here.
They know am not moving in unless they get the sky broadband installed there as every home have been in now,they've waited months before doing it,am not letting them get away with it again as it is the only way at communicating with family and having a connection with outside world.
The place is massive,it's like having a bungalow mansion all to self [and all the managers,and the respite users,but they're in a different wing and managers are in an upstairs part].
Am going to see about making the old sensory room back into what it was as well,and will be seeing about getting a cat!
Thursday, 7 August 2008
2-1 Vs 1-1?
The NAS bosses are trying to get am onto 2-1 support [meaning am would have two of their support staff to self,instead of one] but have heard to get 2-1,they would have to cut the number of days am have the NAS staff because the social services/council are being the usual bastards over funding again.
Am used to get 2-1 quite often at previous home with the regular learning disability staff,but the council refused to make it official so that they could get away with 1-1 most of the time.
Is it illegal or disablist and against the DDA to not provide the extra funding for 2-1 if have been assessed as needing it?
Am could not deal with less days with autism staff as most learning disability staff treat am like crap and was regressing before the NAS staff started.
Am used to get 2-1 quite often at previous home with the regular learning disability staff,but the council refused to make it official so that they could get away with 1-1 most of the time.
Is it illegal or disablist and against the DDA to not provide the extra funding for 2-1 if have been assessed as needing it?
Am could not deal with less days with autism staff as most learning disability staff treat am like crap and was regressing before the NAS staff started.
Sunday, 3 August 2008
Almost free
On saturday,had been given some very big news by dad,though he wasn't supposed to say anything.
He and sister had been contacted by the service manager last week and were told about the plans they had for am,because the home and area that live in now is completely unsuitable-am house bound for most days there,and being house bound meant being kept around the torture that was the noise from other residents and selfish support plan breaking staff from morning till night.
The manager has said they are going to reopen the first place had lived in and move am in there until a permenant residential placement can be found-it's a big modern LD/DD institution with lots of green/grassy land around it.
the National Autistic Society Bosses had argued to get that place at the review meeting.
It's the best news have ever been given from them-will be the only one living there,and will have usual staff routine [both council and NAS residential staff]- even though its near the same area as where am already,it's completely different,will not be house bound anymore because it's like it's own private countryside,plus it is more secure so staff probably wont be complaining about am "absconding" as often.
The institution is also the home for all the LD/DD residential managers and service managers,and it still has a respite unit but because it is a big complex it doesn't have the noise would expect.
Am have already been going through the usual expected problems with moving,as had been told a month after moving into current home that would be moved out,do not know when they will find a permenant placement,it could be this year or next year.
Have also found out they're trying to get the motability car adapted [eg,soundproofed ,padded etc] as Motability only ever focus on the physical adaptions such as things to do with driving.
He and sister had been contacted by the service manager last week and were told about the plans they had for am,because the home and area that live in now is completely unsuitable-am house bound for most days there,and being house bound meant being kept around the torture that was the noise from other residents and selfish support plan breaking staff from morning till night.
The manager has said they are going to reopen the first place had lived in and move am in there until a permenant residential placement can be found-it's a big modern LD/DD institution with lots of green/grassy land around it.
the National Autistic Society Bosses had argued to get that place at the review meeting.
It's the best news have ever been given from them-will be the only one living there,and will have usual staff routine [both council and NAS residential staff]- even though its near the same area as where am already,it's completely different,will not be house bound anymore because it's like it's own private countryside,plus it is more secure so staff probably wont be complaining about am "absconding" as often.
The institution is also the home for all the LD/DD residential managers and service managers,and it still has a respite unit but because it is a big complex it doesn't have the noise would expect.
Am have already been going through the usual expected problems with moving,as had been told a month after moving into current home that would be moved out,do not know when they will find a permenant placement,it could be this year or next year.
Have also found out they're trying to get the motability car adapted [eg,soundproofed ,padded etc] as Motability only ever focus on the physical adaptions such as things to do with driving.
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