The Makaton project

First part [Part A] has now been made and is online:
http://uk.youtube.com/watch?v=Y_4Olfz4L7s
This video am made with staff features some of the basic Makaton signs,not many because the memory stick is so rubbish it won't hold much video,getting a proper digital camcorder as soon as can get manager to authorize/get the money [next week maybe if she's in],so won't be limited in memory space then.
Make sure to have volume on,as the night staff am have supplied the vocals for each word,there's no subtitles.

Other Mak/videos will be made soon.
Am have been teaching some staff who don't know any sign-Makaton,though am do not know the entire 'language',only ever bothered with the basics as it was mostly what needed.

Wanted-a speech to text program

The first wanted post have ever made and it's keeping with tradition of the blog [autism].

Am wondering if anyone knows of a GUI based text to speech program in linux,one that has speed/volume settings,and would be good if it had different voices to.
The reason am asking is because have gone back to linux [dual boot,not deleted vista] though didn't have to get dads techy boss to do install it this time,did it self using WUBI.

the distro am using is Xubuntu [which uses Xfce if that makes any difference] have got espeak installed but that is not GUI/runs off CLI so even though its useable,it's not what am really after in a TTS program,need it to be less fiddly with a lot more options.

Am want something as close to JTalk as possible in linux?
Am have heard about the festival engine and some GUIs for it,but couldnt find festival on synaptic package manager and do not have the skills to install via any other way.

Also,are there any basic programs out there which allow people to make their own programs [a visual drag and paste type one rather than one involving numbers/code],as would really like to be able to make a linux TTS designed for NV/SI autists.

Thanks a lot.

Will sensory difficulties ever be taken seriously

One support staff who am have known for years through the shawe road institution and present-has never got on well with am,or understood am-especially when it comes to the sensory difficulties,and more so especially when it comes to the hearing side.
Just now [the reason for this post] she came in and said, am lazy and have to start getting out more without a car to exercise,and that am not allowed to go in the car to the bank with the NAS staff anymore.

Can anyone who is reading this see the faults in:
Expecting an autie who is severely affected in sensory difficulties [so much,is actually housebound by the hearing side of it most days] to walk through one of the most crippling and sensory torturous parts of manchester-becoming extremely fatigued,visually impaired from the sensory scrambling and often falling to the floor in a meltdown-all from walking down one road?
Can someone please explain how wanting to avoid this agony is being lazy?

She said am need to go on public transport again to stop relieing on a car which had been one of the biggest tortures for am-meltdowned and self injured everytime am used to go on the bus/ring and ride,and family and support workers also got abuse for not 'disciplining their child'.

she assumes because am used to go on it when lived at the kenwood residential[but misses out the important part-was not able to cope with it,why should getting dragged off the bus in a frothing at the mouth state by support staff be treated like its ok to force?] am faking the need for a car,and am just being a lazy bastard.
the support staff who has said this is a right fat bastard who gets the car everywhere,right,am just being lazy-the concrete head banging and severe tonic clonic seizure in front of them are just a way of saying am a lazy bastard..yeah,whatever they say,idiots.

She like many staff dont seem to realise either,the hyperacusis am have got worse and is diagnosed at profound level,she and the rest of the ignorant ones say 'her hearing didnt used to be as bad as that' and say am faking hearing,even though a hearing test a few years ago showed hearing was even higher than what hospital software could test up to.
The NAS support staff who come here have given all the home staff info on hyperacusis because this is a comorbid of autism,which clearly states it can get worse coming into adult age which is the exact pattern that happened to am.....but of course,they're going to ignore the experts and believe their stupid shitty gossip.
They're fucking morons.

So how many other autists have had the same sort of problem-not having sensory problems taken seriously by ignorants? what is everyone elses stories on this?


If only everyone knew what the reality of living with the extreme opposite of deafness was like.
If only autism awareness courses for support staff and whoever did a lot more on the sensory side.
Am so fed up of constant sensory attacks with living in such an unsuitable residential and area-all because the service managers didn't understand the sensory side either and put am in the noisest home in the service.

A disability site that isn't so disability friendly

There are many of these,designed for disabled people of all types,but never quite get there with accessibility and understanding of how their users are affected by their site.
A site may do everything possible to help the visually or physically impaired but don't go further enough into the spectrum of disability,in fact,some sites do not seem to know the meaning of the word disability-they think it's something that requires a wheel chair,hearing aid or cane and thats it-every disability covered! not likely.

So here's the point of this post,tonight,a certain organisations' major uk disability forum that am use [which has users with anything from terminal cancer to spina bifida to autism,epilepsy,schizophrenia etc on there] had a bit of a problem with one of it's community networkers,that is someone who is from the community who has to welcome new people,start topics etc,they're not the organisations' staff and don't get paid.
Anyway....she baited and attacked a certain user on there,in different threads,and when the user made a complaint to the organisations hosts-she got emails off her 'boss',she then posted them all publically.

Instead of temperarily banning her the mods have closed the whole forum,and buggered off for the night,they have not even stickied a thread to say what is happening,and why it's closed.
Am have been using that place for years,and visited every night as part of routine- taking turns on there then WP,there then WP and so on,visiting more so since they went full time.
So the usual happened-meltdowned,or to be exact-the wall got a beating with head and am ended up restrained on the bed.
The mods etc know there are many people like am on there as this has often been discussed-not just autie/aspie who for some reason or other need it kept to routine and predictible opening times and/or open at night [and are all actually paying for it],so to close it all down instead of just deleting the threads and banning the networker temperarily is..really stupid.
The networker has severe mental illness,and am think she may be having an episode,so that needs understanding,but there was no need to shut an entire community down,if they overreact like that to something small,what would they do if the place got hacked or spammed with tub girl?
So fuck it,not good.
Have been speaking to dad about it on MSN as he has just got off night shift,not a good night [or day] at all.

Agency staff

For the past week or two weeks [can't remember which,short term memory challenged],am have been getting used to a new agency waking night staff [waking night is someone who has to stay awake at night],they're not here for everyone else so they have to wake the sleepin staff up if they want something.
She's from the cheapest possible agency called Primetime,doesn't take much to work out why the council always use them.
Am supposed to have council staff at night but there's a long term shortage of them,so they get the worst agency around to be waking night instead.

One of the two waking night staff left suddenly,with no warning causing a lot of meltdowns,a pile of smashed glass all over bedroom and several smashed draws.
She later said her mum had been looking after her baby for her in london,and her mum got ill meaning she couldn't look after the baby anymore-not sure how the baby got up to Manchester,can babies fit in the post box?
And the first night the new staff came,am had ran off,didn't realise had very little clothing on,ran through many twisting alley ways and got to usual place-a childs park,like to sit up on this covered climbing frame slide thing.

The police eventually caught up and took am home,was told had hypothermia-had not realised because do not feel the cold-ice had been forming on face and arms/feet.
The evening staffs had stayed on to look after downstairs unit,whilst the sleep in night staff stayed with am to warm body up slowly and change am.
She then left to go to sleep when night meds had kicked in and settled am down,and new night staff lady stayed.

Am still having problems with the new night staff lady,but am not running off from her which is good.
Am find with each new night staff accepting them gets worse because they always leave with no warning,or say they're going on holiday back to their country but don't come back.

Am also cannot understand most agency night staff as they're all from other countries and have strong accents,don't use the language am understand and don't recognise makaton-some of them have thought am was playing charades even though they are told am a makaton user in the communication passport they are required to read by managers? was asked 'is it a film?' when signing for drink!

Sometimes,am have thought fuck this,grabbed the keys off staff and got in the cubord to get a can of drink out [they lock away cans to stop am cutting through self with the metal off them],but then get into trouble off the manager for grabbing off staff.

Can't wait till move to NAS residential care,no more agency.

How not to race an RC

Not good-today,had broke an awesome remote control truck have been using every day since christmas-an electric thunder tiger phoenix ST,am was outside with staff on the road-started it at full speed at one end,was stood in middle and didn't think to get out the way,it smacked straight into just below ankle-am felt leg bash to the side but hadn't realised what happened till one of the staff shouted 'the wheel has come off',it hadn't really it just looked like that,-that force on leg was the car-and that stupid leg was responsible for breaking the axle on the car,one of the pins has come out as well but dad said on msn tonight he's going to have a go at fixing it tomorrow.

And have actually been wanting to get a HPI baja [a very high end RC buggy] that goes super fast [though in reality,even though have been told can afford it,could never get one cause it's petrol driven=sensory killer] no way,will have it written off quicker than sister and her boyfriend write off their cars [dont suppose read TRA rach? avoid that line please,don't want the free taxi service to stop].

So here's the photo of the damage [with body off]:

UPDATE
Dad managed to fix the car at the weekend,he used a special type of extra extra extra strong glue [amorate? looked something like that],and used some pieces off a black coat hanger as a splint in case that mega glue falls apart.
He looked in the manual and said that the part that is broken can easily be replaced,so if it does fall apart again someone can go and get the part off model zone.

Getting away from this hell?

Have just been told by the NAS that have been put on a new scheme they have just started, D had told am the managers had brought name up in the meeting of another service user who is needing to move to a new residential home,so am on the list!!! finally,a new placement,after that big fuck up with moving back to the shawe road institution [they decided to completely re design the place instead,and have been back since-they not even started on it].

the NAS will be running several new residential homes as part of this scheme,they're for autistics with high complex needs who are too C/N and challenging for their other residentials [end up clashing with others easy],they have got their own developers in on the scheme,who are willing to adapt all the homes to suit autist needs [not sure if they were also meaning the homes were going to be built or whether they are just going to adapt some],including things like padding the walls and sound proofing.

Here's the shitty part,this scheme will only be happening if the council agree to fund the homes,but the NAS has said that the council will make profit on them unlike with their own council residential homes so this should be a big help as the council care about money most of all.
theyve also got to convince the council to transfer am over to NAS care completely,which they have had trouble doing up to now because council don't want to pay the extra money.

Also,have now got a new autism specialist [pyschiatrist] called Dr Raja,part of the ss LD team-she has taken over from previous autism pysch am had who retired [John Birkett],she is going to be sorting those council bastards out to make sure they move am somewhere suitable in not too much time,and she's coming to sort out all the constant changes that goes on here,as well as the extreme sensory overload in this place,just one example-none of them care that by replacing the table and chairs in the lounge set off meltdowns and has meant have not been able to go in the lounge for over a week,it will take months before being used to this change-they knew about this but did it anyway-they didnt even say they were getting a new table-thats twice in a row,the other one got broke,in other words she's going to make this place autistic friendly!
She is also going to help am with lots of things,and also going to prescribe something for sleep-those who know am will know have been trying desperately to get sleep medicine off doctors for years,so this will be a big victory.

The Autistic kit

First post in months,have been busy on catster and getting out in the car a lot with the NAS.

Here's many 'essentials' that may not have thought of trying before,all part of one autistic kit.
First off........

Ear defenders

These ones have had all the padding chewed off the headband,but can get them from places like B and Q- building shops,these help so much with sound when combined with ear plugs,but do not recommend constant or long term use of them,it causes tinitus.
There are childrens ones available online.


Ear plugs

These are laser lite earplugs,made of smooth foam,there are better ones out there ,as in ones that have silicone in the middle,but am use these under ear defenders which makes a huge a difference.
Both ear defenders and ear plugs take some getting used to to be able to wear themwithout thinking,and a lot seem to give up quickly on them but keep trying,may find get used to them,it took am two years to properly tolerate wearing ear plugs.


Helmet

Highly recommended for those who regulary head bang or punch/hit their head.
The one am have is a Nike-Bauer ice hockey helmet [no face cage though some may
find these helpful-for biting problems etc].
These can be bought in many places,but mum and dad had got am that one from Altrincham ice rinks' ice hockey/skating shop,am assume then that most rinks
should have a shop or one near them.
It provides better protection than padded helmets,and they cover all of the
head,the only downside to them is can't wear ear defenders with ice hockey helmets, whereas padded are customiseable.
There are other helmets available that offer some protection against head banging/hitting,such as rugby helmets,but the problem with those is they're split at the back-a weak spot in them.


Gloves

These are finger less wheel chair gloves,and are great for protecting against hand biting.
It is ok to wear full length gloves but a problem with them if relie on laptop a lot, is their tracking pads don't track movement through them so a comprimise is wearing
fingerless gloves.



TTS [Text To Speech] program on laptop

For those who need speech backup,or don't have any at all-TTS gives communication independance to those who are limited verbally.
The one am using there is JTalk which is completely free and completely customiseable.
The main problem with TTS on laptops or PCs is windows [the latest/vista] now has only has one voice to use,whereas with XP had had a choice.
And although it does understand most words am use,the speech engine doesn't say some words right.

For Autists who are completely verbal,but have a reading or writing difficulty such as dyslexia-try STT [speech to text] instead,of STTs-am only know of Dragon-which costs,
but there should be some free STT out there.


Medical ID

Am wear this because of 'absconding' regulary,so the police can find out am not a drunk, illegal drug user or pysch ward runaway,and explains why they think am ignoring them.
Recommended for both children and adults,it doesn't matter how low or high functioning an autist is,emergencies can be very different to normal for autists leading to wrongful
arrests or restraint,it's also good for paramedics to see,and other emergency people.


Favourite sensory and stim toys

These are own favourites,a koosh ball from the shop at knowsley safari park,a dog chewy toy,and a rat teddy from ikea.
Am chew them all,feel them and spin them,the rat teddy tail feels very close to a real rats tail.
Make sure have got enough sensory and stim toys,and cannot go wrong with fibre optics either! am not able to buy any anymore due to smashing them all,but the NAS often book the sensory room just for am and them at victoria house-another option am recommend,if are able to access them [sensory rooms].

The meltdown/incident rucksack

This is kept in bedroom and is what staff will take out with them if they remember, everytime they take am out.
It's a rucksack full of emergency things,there's a big foldable warning triangle they bought from a car shop in case am have a meltdown or seizure on the road,there are some squashed in pillows to help against head banging or kicking out.....a meltdown/incident rucksack could be tailored to anyones needs.


Xbox360

When they're not RRODing,they play great games,great for autists because they are calming,and have games for all abilities and ages,the ultimate stim toy.
The xbox in the photo is a halo3 painted limited edition 360, nearly a year old and not one crash.