TuX
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Posts posted by TuX
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Has anyone else come across one of these yet?
What do think of them [whether have or have not had the experience of their.....torture]?
Am stay at parents' every weekened and this weekend was very different,had just got out of taxi on saturday morning with dad and headed towards usual spot to go into home,but,there was an extremely high pitched and brain crippling noise and feeling,fell to the floor instantly meltdowning,dad had dragged am in.
After a while,it was worked out that--dad had no idea what had happened because his hearing is not able to hear it,so he couldn't warn of it,am thought it might have been one of those anti cat boxes that people put in their gardens as dad had got one a while ago to keep the cats away from one part of the garden but removed it completely when it kept affecting am,this one did not seem as bad in terms of effect [the cat one made am sick] -they also only go off when something walks infront of it,but think it's got to be a mosquito- the noise will go on for a bit,then it goes off,then it goes on again,then it goes off----it goes like that all the time,no breaks,both mum and dad can't hear it.
There is a shop nearby that has a lot of gang problems with police out often,so it could be them [there's also a load of other shops along with it],there's also a building site at the end of parents garden and am wonder whether they would be using one,dad said no because they are well fenced in and they've got people for security,he is going to speak to the shop owners about it tomorrow to see if any of them have it.
This device started this week/last week [not sure what day it is at moment],and am not going to be forced into wearing earplugs and ear defenders in family home/old home for the rest of life and never be able to go in garden with the cats because of this.
Am think Mosquitos and other similar devices are bad,because they are used with automatically assuming the people who are affected by them are doing bad,
they are only against teenagers [but of NTs,they can be heard into thirties and over] and Auties and Aspies can be instantly overloaded by them,the only organisations campaigning against them are childrens groups,there needs to be the NAS getting in there and stating it's affecting innocent Autistics to [there was a recent thread about this on WP to].
Innocent teens,hypersensitive NT adults and Auties and Aspies should not be attacked in this way.
If anyone wants to hear it,am will find the video,it's on a sky news report video.
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Hello Anna,
thanks for replying and sorry not replyinh yret,not even sure what original post is like as wrote it with a messy head,rlreally need to stay away from forums and blogs when head is messy.
The manager wont sort out a helmet,even though it would save head a lot as the room padding only helps if it happens in bedroom.
Are able to move about a lot with the full EEG test or like the shorter test,do have to stay sat on the chair not even able to pick nose or walk around? am wasn't allowed to do that in the short test, it would be better if they could do it at home,as there is a lady here who could set off meltdown in am,she has tv up full,bangs on the door and never shuts up shouting apart from when she's fillign her mouth with food,am don't want to end up hurting people in meltdown in hospital if people there get in way.
Do hospitals allow bringing own laptops?
The padding hasn't come yet.......and the man from ford is coming this week so will get to choose car then,staff are trying to make get a fiesta,there's one around here and don;t like the shape and lines of it at all,got to be focus,or cmax which is similar shape and lines but dont know what its really like apart from that.
It would be great if room can be completely sound proofed,dad said it might make room smaller? if it works it can be very small dont care.
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They are bad people,if they cant afford something they should save for it,not take it from other people.
At least are able to get it back though,but it is not fair that the bad ones get away with it.
It also happened to one of the night staff who works here,recently,it was traced back to being used at tesco,she got the money back.
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Have not posted on here in a while...have a few things to over-write about.
Sister was in London last week doing training with other people from her work [as councilors] and the person doing the training happened to be specialised in Autism although she doesn't even work with autism and it was nothing to do with the training.
Sister told him all about am in the break and he said what am had was called explosive Autism.
Has anyone here ever heard of the term before and know what it means?
Not even the Autism specialists am used to see ever used that term.
Have been threatened with another move since january,after moving in only in december,as they say they cannot cope with am [it's a residential home for people with mixed disabilities] and although have medications-have been having severe meltdowns everyday,sometimes more than once and many of them include seizures.
The staff say setoffs are change,unpredictibility and sensory related,and this area is probably one of the worst for sensory input,but because they had ambulances out twice last week [and am fought back when they tried to drag,as have a hospital and ambulance phobia] and have had a lot of head injuries,they got am emergency appointment in hope hospital last week and the neuro said am have to stay in there for two nights [in a private room] whilst they do that horrible feeling wires stuck allover head test.
He said if am do not have a meltdown in that time,they are going to bring am to the setoffs,it's like they're allowing torture.
The managers,social worker,LD community nurse and behavioral nurse have said no more, with moving am about and they are trying to look at ways of keeping am here-the manager mentioned all this tonight,as well as saying she is going to look into getting bedroom completely sound proofed.
Does anyone know if it really works or not? the manager doesn't know anything about it.
The new custom made padding for bedroom has finally been made and was brought here for a trial last week by the OT and designer,had chose the colour/pattern of it last december,it needs a change and is going to be installed later this week,the previous padding is bright red and is not protectable enough.
The managers have also referred am to Autism Initiatives and they are coming on thursday to do an assessment.
Has anyone ever heard of them or used their services before? am already funded for national autistic society services,this other group are supposed to be like them but just don't seem to be as well known,the community nurse said she thinks they might offer respite amongst other things.
And have also found out am getting a motability car,they have mentioned getting one for ages but said the high rate mob. component covered all the taxis needed [it never did]. Am hoping to get a ford focus.
Oh,and Samianther is now upgraded to two units of insulin,and she runs around the room chasing after dad when he's got the syringe out,waiting for it.
what kind of cat likes having injections.
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Bit Torrent might have it,am have had a look on one main site but can only find HP printer drivers,although don't recommend BT unless know how to use it/what to look for etc.
Wonder if HP host the drivers etc themselves?
If PC is not booting,and it's not BIOS or hardware related,try downloading Ubuntu,use an ISO compatible burning programme [not sure which ones there are,as have only ever got ubuntu by getting them to send free copies but that takes a long time for delivery] to copy it to disc,put it in the dvd rom drive of the bad computer,and either set up as a live disc [which does not install anything to hard drive so cannot mess up] or install it,it's just an alternative operating system to Windows but it's completely free,and will load up needed drivers etc it might take a lot of effort to get some modems and wireless things working in ubuntu but is great when it works,have never had any of them problems as had basic no wireless set up and used cable broadband at the time.
Have had own share of dead computers to-bought an acer travelmate laptop last august,it got damaged beyond repair in a meltdown+seizure,weeks later [last week] managed to afford another one,but PC world had sold out of all the ones could afford,and only had one horrible cheap nasty advent laptop left,took it as wanted to get back online,it turned out to have a battery that did not work at all,a very obvious dead pixel and a space bar that sticks and makes a lot of noise when used,took it back today and they had the laptop am had originally gone to get in stock [one left ,after saying there were none] -a toshiba equium,have got extra insurance on it now.
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Sisters' boyfriend watches her programmes as he is a friend of hers via Norwich FC [he repeats this often,though it is true] ,he doesn't even like cooking but he came yesterday [to parents home] with some strange looking thing in a dish he'd made from reading one of her books,it looked like cat sick.
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Hi all..- I have another q to add to Mumble's original one...does anyone know/think that having a social worker is beneficial when trying to get various benefits/support.As a young adult with AS would it help to have one? - are they useful??
Thanks
<'>llisa32,
am adult but not AS and have a social worker under the learning disability team.
They help am in many ways,including going to all meetings am have,making sure all own specialists know what has been happening,making sure am do not have problems here,arranging specialists visits,goes to all the meetings am have including res. home meetings..
the way social services is,if the only need a person has for them is to do with benefits,they won't get a social worker because the criteria for getting one is stricter,the person has to have a high need to qualify in most places,because of funding.
There is also long waiting lists for social workers,unless have very high needs,or are going to be homeless etc.
Try the CAB or NAS for getting help with getting benefits instead.
But what do mean by support? what type? social workers definitely do help when it comes to getting support if meaning support in the community,cannot get it without unless pay for support privately-they do a assessment at the start to see if are suitable for the services,a lot of organisations won't take clients without social services referal.
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Think it should be an 'opt out' thing of being disabled,rather than 'opt in',why should those who benefit from the labels,have to fight even harder to get the aides,services or support they need? maybe there should be another label for those who are unimpaired by their ASD so they don't have to be associated with disability,would they not be on the BAP side of ASD?,do unimpaired aspies/hfers who need no support or accomodations need official labelling?
How can you have an 'automatic right' to a Blue badge...I have AS, and have never needed a Blue Badge, and the same for my son. It would be wrong for either of us to have this (or indeed any provision) automatically just because we have AS.Being classed as disabled wouldn't automatically get someone a blue badge,the person has to have higher rate mobility component of DLA otherwise it's near impossible to get, and most disabled people won't get high rate mobility.
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If do not like adverts,get a sky+ box/sky sub.,record whatever programmes want,and skip through adverts,it's great.
Not sure if Virgins box does the same as it's got a built in hard drive.
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Am do not have children apart from several cats at family home am think are very autie like [especially one in avatar,Biscuit],but am have classical autism [diagnosed with other ASDs and LDs previously] and sister,who thinks she's on the spectrum,but doesn't need any help and doesn't want diagnosis,she's also got snyeth....the thing seeing things in colour.
Dad is suspected of being aspie,some of his relatives have diagnosis others don't.
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My sister & I argue over how I should deal with Toms' behaviour in public.Like when we go to a play group or clinic appointment and Tom is banging a toy against the floor / wall and screaming, or when we have the mother of all tantrums in public where I end up on the floor rocking him & stopping him from hitting himself. My sister would happily walk around the room saying "He is autistic" but I'm not so sure.
I have the - This young person has autism ...... - cards from NAS & have used them, but I don't want Tom judged. Tom has had an ADOS assesment & scored 17, which definatley puts him on the spectrum, but we don't have an official Dx & I still feel like a fraud using the cards. I have also come across some really ignorant people...
I Quote "What like Rain Man?" "I've seen after Thomas & your son doesn't wear nappies!" "Don't let our son / daughter near that kid he is autistic!"
Ignorance like this makes me mad
How do the rest of you deal with public reaction as I don't know whether it's best to sign post Tom or have people believe I'm a dreadful Mum & he is a really naughty boy!!
Kel
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He is going to have the pre judging forever,it comes as part of being different in some way,these ignorants do not see past the behaviors and the visuals.
What can do is either choose to educate them on his autism,they might carry on being ignorants,or they might listen and be better educated for it.
Or can choose that the ignorants are being a waste of effort and move on,they don't always deserve it.
Learn to numb against words-accept words are only words,and keep telling self they cant hurt unless let them.
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Phasmid-very nice member,one of the most recogniseable,big part of Krism/asd-forum.
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They're probably using a copy of Norton Ghost,it's basic stuff to do,shouldn't really charge for it,but they all do in techy shops as standard anyway.
Are going to be buying a new laptop?
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It's on 18th June 2008.
Am currently looking into possibility of getting a Manchester APD together,as it seems no one has organised one yet,and am also have access to a few different services who might be willing to help out [mencap,they've got a hall with a big garden and great swings out the back],the NAS day centres,the older one being better as it's got more space and less sensory overload inside,but no idea whether they would be willing to donate the building for a bit.
Or it could be outside,like heaton park,as there's a lot of animals there to,only problem with outdoors is weather being unpredictible.
Would anyone here be interested in coming to this?
Am would like it to be for auties,aspies [of all ages] and families of those on the spectrum [previous ones have tried keeping it just for adults],perhaps have food,drink.. available,a quiet sensory area..have autism/aspergers leaflets and books available for people to look at..
Just some ideas have thought of,haven't said anything about it elsewhere yet.
What does everyone think of it? it could also be a krism/ASDF meetup as well.
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Isn't there a problem with getting Wiis anywhere in the country at the moment,or have they got enough in now?
Am won't bother adding recommendation as it'll just be biased.
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Actually, I could really do with a new sofa as our current one has been Beagled (by the handsome little creature in my avatar. He's already demolished the one before this one), but I'm so reluctant to get one as I know he'll Beagle it too. Now, what I need is a Beagle-proof sofa, and I ain't seen any ads for them. If anyone sees such an ad let me know....He is like Jeremy Beadle in a way-makes am remember the theme tune,with Button,it'd be more like..."Watch out...Beagles about.."
sofas.
There isn't much of a difference with sofa adverts anyway,they always seem to be on,DFS seems to have a sale on every day.
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Am going to eat more chocolate next year,especially from hotel choclat...or however it's spelt.
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He doesn't get damp! He's a great big mummy's boy who doesn't like rain. He struggles with the cat flap these days, but if I open the door he goes out and sits on the patio for a minute or two once in a while, but one speck of rain and he's back inside!He can't wash properly any more, so he does whiff a bit sometimes. I have to give him a wipe down with a flannel.
He's not very big. He's a skinny little thing really. I feed him bacon rinds and clotted cream, but he just stays skinny. It's the fluff that makes him look big.
Mr Cat is not likely to live to be 20, although I would love it if he did. He was severely neglected and underfed for the first 10 years of his life. I've had him 4 years now, and he has dramatically aged in the past year.
Fluffybum was just like that to-everyone said he must be getting fed by all the neighbours as well but he was very skinny underneath all his hair.
He was also neglected and underfed to [his dinner before am took over looking after him was scraps thrown out the window as he wasn't allowed inside the womans home,and lived outside under a bush],he died in October and people have told am he was well over fifteen.
MrCat looks like a young boy,no way would am have thought he was an older gent.
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C and the twins were helping me get the shopping out of the boot today. I lifted out the last thing, which was hubby's new computer for Xmas and reached up to give the boot door a big yank to close it. Because of the computer box, I didn't see that C had stuck his head back into the boot... well, you guessed it - OUCH! He didn't cry out or start crying, even though I knew from how hard I'd yanked the boot door it must have hit him pretty hard. So I asked if he was ok (he said he was) and I warned him about staying away from car doors and boots. It was dark (tea-time), so it wasn't until we got inside that I saw blood literally squirting out of the top of his head and pouring down his face. It was only when he saw the blood that he started getting upset. It looked horrific, and the twins started howling at the sight of him (I felt like joining them).So we headed straight back out and down to the hospital (one of the joys of island life - it's only 2 minutes away, and you're almost guaranteed to get seen right away). The nurse on duty knows C and has dealt with him before (with his allergies), so she was really good with him. The doctor glued his head back together, and did all the head injury tests. C was really upset and frightened about all the fussing and cleaning and glue, but he was very, very brave. He was dizzy and sick as well, so I need to keep a close eye on him tonight and check him every 2 hours once he's sleeping. After an hour, they let us come back home (once he started demanding his dinner), but told us to come back if we were at all worried (another joy of island life - they won't keep you in if it can be avoided, as we live so close).
He's been acting fine since, apart from a headache due to the egg-sized bump on his head.
The nurse and doctor kept commenting on how brave he was being, but he genuinely didn't really seem to be feeling much pain and was upset only because of the blood and the threat of stitches and being sick. If it had been me, I'd have been rolling about on the ground in agony.
I've always known his perception of pain was not the average, but this seems pretty extreme.
Anyone else's kids have different perception of pain?
Krystaltps,
out of every autie and aspie am have ever lived with,there has only been one hyper sensitive to pain [the horrible aspie lady who had to move away from]-she would be after the pain killers for every little problem,but she was fine with burning her skin off in scalding hot water.
Am have bitten through tongue without realising it,don't feel pain from anything that affects the outside of the body including punches,bangs,cuts etc,but am do feel 'inside caused pain' such as migraines or trigeminal neuralgia.
It's one of the possible bonuses of ASD-in some ways because the person might be able to just get on with whatever they were doing,when with anyone else they might have to rest from it [depending on what it is].
decided to add a PSP to his Xmas list.Does he like the Wipeout games?
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Coat thing is difficult because I know that R can and does put his hands and feet in a roasting hot bath (I've got to be extra vigilant/he's still only 5), problem is that his head maybe doesn't tell him he's cold, but his body does. He gets covered in goosebumps and then ends up miserable being chocked with the cold or the flu. It's less about that and more about the fact that sometimes he has no problem with putting his coat on and yet other times all hell breaks loose. That's what I don't get.Am like that to-it takes am a long while,if at all to process whether something is too hot or not,but am feel fine when out in freezing temperatures in bare minimum of clothing.
Perhaps this is something that R could be like to?
With the coat problem,it is possible he can cope with it some days and not on others,there are various reasons that might be making him less/more tolerant,
such as tiredness,sensory overloading [not neccessarily on high level],feeling too hot...
And about the lying,although this is a bit different [as it wasn't intentional lying],am have a teenage cousin who is also autie,he had a problem knowing whats real and what isn't,the social worker had asked him if his parents hit him as he was covered in bruises [from falling off a wall],he said yes,they beat him.
Uncle and aunt had a lot of explaining to do over that one with the SS,it was real to him though.
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If am remember from what have heard,correctly-the brain is supposed to be going through a lot of changes around five years old, this might be why they're not being quick to make an official diagnosis.
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Thanks Flora. Yes, it is a seriously dodgy area. There's a student forum I visit sometimes and there's a whole thread on there that's been going well over a year, entitled, "Live at <name of hall>, Get Murdered". We get leaflets from student services put under our door saying don't walk alone at night etc., but I don't really have much choice. I've taken to going by train, now I can cope with it well with the glasses, because it means lots of people coming off the train together so normally I wouldn't be alone - but it just happened that last night I was.I won't. The glasses have made such a huge difference - a difference that is incomprehensible to most people - that it would take something huge to stop me wearing them.
Mumble,
About those personal alarm things-have ever heard one of them when they're set off? am know that do have a lot of problems with sensory hypersensitivity and this could cause a problem to self more than the person who are trying to get away from.
They are extremely agonising,a.....not nice person at college a couple of years ago set one off when he was near am,and it sent am into a deep meltdown.
As for that man and his problem with the glasses,there are many people out there like him,people who just abuse a stranger because they don't like the look of them or how they are acting,one of these days they will do it to someone who is stronger than them and they will then learn what a b................ they are.
I have edited the end of this post as the content of the link contained detail unsuitable for a family orientated forum.Karen.
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What is everyones most currently played-- favourite computer games?
Own favourite is Okami and it's official sound track [have got that as well as like the music a lot].
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Thanks TuX - I'll look into it, but it was through the NAS (well, one of their partners) that I had the appalling mentoring experience that really set me back a long way. I think the NAS befriending is what DMB (on this forum) has trained for - and I seem to remember him saying something about long waiting lists - but I may be wrong.Mumble,
Can see it being the sort of thing having long waiting lists [anything worthwhile and useful always has long waiting lists] but could be worth a try even just to find out how long waiting list is in the area.
There are some good staff in the NAS,as am know two of the lady staff who work at NAS' Anglo house,they're really nice-don't let the nasty ones put off the good ones!
Thanks, TuX, but it doesnt operate in our areaThat doesn't sound fair-what does having the NAS HQs in specific areas have to do with not having volunteers in other areas-when they are not going to be needing to use the HQ anyway?
If it would help to backup what are saying to the NAS,what about starting a petition?
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Not TuX either...not a member of face book,although jaffa cake appreciater yes,they do not put enough of them in a box.