Cant think of a title

[TuX]

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.

Edited March 11, 2008 by TuX

[mum23]

Have not posted on here in a while...have a few things to over-write about.

 

Hello TuX,

It is good to find out that the OT has sorted out the room padding for you, did you get a protective helmet sorted out I do not recall sorry? If not I found some in the 'Rompa' catalouge, I think they have a web site.

About 'explosive Autisum' I wander if it relates to people that react quickly and forcefully to stimuli, a bit like a person with epalepsy can react to flashing lights, just a thought. You mention about having to have electrodes placed on head and being monited, I think this is to see if when you go into a meltdown you trigger a chain reaction that causes some form of seizure, if the Neurolagist can find where you are 'missfireing' (on an neuro transmitter level) from may be they could give you meds that target only that area! I know it sounds like the Dr. wants to turture you, but the idea is to have one time of recorded meltdown in hope that they can see from all the equipment where your problem is origanatining from. I have had to have an EEG, the test with all the electrodes on head, to rule out myoclonic epalepsy(sp?) I will say it was not very nice but I keeped in mind that may be this would help them find out why my body kepted moving so much without my say!

There are lots of sound proofing matirials around, so it would be possible to have your room sound proofed, but you will need to make sure your care manager sorts out some sort of alarm system that gives a warning to stuff, when you are having a meltdown so that some one can check to see if you are unhurt after meltdown.

Good news about the car.

Anna

[TuX]

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.

[Suze]

Hi Tux...............what colour is your room?..............the red padding might be affecting your mood...........my son has a bad reaction to red things.He uses blue glasses to help this.Have you tried ear defenders to help with the noise problems?

[mum23]

Hello Tux,

Firstly I would look at the ROMPA web site helmets cost around �60 but would be worth it I think. Ask the OT about one it is the sort of thing they can help you with.

About the EEG you can walk around for the long test infact they want you to move about to help trigger an episode, that is what they want to catch on the EEG.

Hope you get the padding sorted out soon.

 

Anna