Bedrooms

[mand65]

My eldest has learning disability and aspergers, yesterday i cleaned her room, litterally everything on the bed and a"good" sort out. She will not throw anything out, sweet wrappers, newspapers, even a bit of curly gift ribbon off a pressie "i need that", my gal is messy and she stacks things, i got quite a lot of recycling done paperwise and also found £40 in envolpes and hidden in files. I do tell her that i will be cleaning, she's not happy ....and yesterday was not a happy bunny but towards the end of the night settled down. But its got to be done for health and safety( my gals health.. my safety )....is your loved one a stacker and knows where everything is, like my gal.... or a neat and tidy person, she still amazes me how she works things out in life and spots allsorts even the tiny things ......mand

[nelliejo]

I have two boys and although they are both on the spectrum they are chalk and cheese in absolutely everything

Son No 1is AS and ADD and his bedroom is 'after the earthquake' state - can't even see the carpet, but he knows where everything is

Son No 2 is ASD and has a very tidy well-organised room, but can never find things as if they aren't where he expects them to be he doesn't make any attempt to look anywhere else

They used to share a bedroom but neither one could cope so had to separate them for the sake of my sanity

[no1mum]

We have a 16 year old (aspergers) who has gone from one extreme to the other, used to be very tidy and organised and now is very messy and blames everyone else if he can't find anything, but goes nuts if things get moved.

[Caring_Mind]

Hmmm, not sure, but my son who is now nearly 35 has gone from being a very messy and untidy, clumsy child to a 'Parent' who now knows that these cleaning and tidying things need to be done to keep his children safe and well

[Lazydaisy]

Ben is 25 and has Downs Syndrome. He is very messy, but he knows where everything is in his room.
We had a clearout a couple of weeks ago, and he did not want to get rid of anything. I had to find a reason to give him to throw things out. (he didn't mind if anything was headed for a charity shop, he just hates throwing stuff out for the rubbish).

[nelliejo]

Son No 2 will only allow clear-outs if he knows his stuff is going to the charity shop too.
In fact he insists on taking it there himself just to make sure!!

I don't think he trusts me

Son No 1 doesn't allow clear-outs at all

[mand65]

I had taken my gals clothes to the local charity shop......a few weeks ago she was at the same shop with her auntie, she was pleased with her purchase, she took it out of her bag to show me .........only a flamin scarf i took there the month before .......she cracks me up.....my niece and i were howling laughing

[no1mum]

Awwwwww Mand

[AspieMum]

We need a 4 bedroom property even though it is just me and my 3 boys. The reason: 2 out of my 3 boys have Autistic Spectrum Disorders (one of which also has ADHD). We have tried living in a 3 bedroom house. It does not work. They don't leave the other person's things alone, they won't let him sleep, etc and if put in together then they play loudly all night (or at least until 4am as we gave up at that point- thankfully we were renting a detached house at the time). My oldest son had to sleep somewhere other than his bedroom as he had to share with one of the twins and my bedroom was being used to keep everything out of the way of the kids that needed keeping out of their way (so was out of bounds to the kids). He now has a lot of stuff that needs to be kept out of his little brother's way and needs somewhere to do homework. My stuff would have to go in his room and I would have to have the loung/living room as my bedroom. But that would mean my 11 year old twins would use my bed as a trampoline which would wreck the matress I need for my bad back as well as being dangerous. They have managed to wreck the sofa that way. The lack of sleep from the pain would mean I'd be likely to crash the car. That is what the government want as they want to charge us for any extra bedrooms even if needed for someone's disability unless they are in officially disability adapted accomodation by reducing our housing benefit to whatever the amount is for a property of the size you officially need- 3 bedrooms in our case as it does not allow for disability (or it didn't when we were applying for Housing through the council about 5 years ago).

[sarah malone]

This made me My daughter is 8 she has Aspergers ADHD and loads more, she is a terrible hoarder pieces of paper that have been cut up/shredded, bits of material, clothes that don't fit pretty much anything and she stashes them (we call her Squirrel) She loves bags and has tons of them which she uses to put her things in then hides the bag and forgets where My earliest memory was going into her room and it stunk after much searching we found a bag with a lump of moldy cheese in. Jazz used to come home from school and when she took her shoes off they would be full of things she had found stones, coins, blue-tack, bits of her lunch, pencils pretty much anything!
I have given up trying to sort her room while she is home as it is impossible as everything is so important to her And I always avoid jumble sales e.c.t because I know we end up with more than I donate. I got my partner to put up 3 of the canvas shoe holders on her wall as the pockets are small (she is obsessed with miniature things) and just perfect for her 'treasures' also I don't have to hunt very far for things.

[Deborah Gordon]

My nearly 20 yr old with GDD and autistic traits likes a very tidy room but he hoards strange things. For years he had a huge box of toilet roll tubes in his wardrobe. i had to discreetly take a few out every now and then or they would have been over flowing!

The problem comes once they leave home.... I also have a 40 yr old brother with cerebral palsy (mild physical disabilities and moderate learning difficulties) coupled with autistic features and he's now living in his own flat with support for 6 hours a day. There's no sign at all of what the support does! They won't do anything unless he asks them to so he lives in an absolute filthy pit! He can't get his head around planning cleaning. laundry etc and they refuse to do anything without him taking the lead. Without being too graphic he has bowel problems and there's often 'mess' all the way from his bedroom to the bathroom but they say they're there to support him and not clean up after him so it stays like that til my mum (63 with fybromyalgia) goes and cleans for him.

My mum suggested drawing up a weekly planner and having it on the kitchen wall so that R could see what was going to be done each day but the agency won't even do that. R will do things IF there is a clear plan of action but he can't get his head around making the plan up. Next problem is R has extremely challenging behaviour and this is only agency left prepared to work with him. My mum raised the issue of health and safety and said R was at risk of infection and the agency said that was his problem if he chose not to clean!

The whole 'care in the community' thing is a farce IMO.

[AspieMum]

This made me My daughter is 8 she has Aspergers ADHD and loads more, she is a terrible hoarder pieces of paper that have been cut up/shredded, bits of material, clothes that don't fit pretty much anything and she stashes them (we call her Squirrel) She loves bags and has tons of them which she uses to put her things in then hides the bag and forgets where My earliest memory was going into her room and it stunk after much searching we found a bag with a lump of moldy cheese in. Jazz used to come home from school and when she took her shoes off they would be full of things she had found stones, coins, blue-tack, bits of her lunch, pencils pretty much anything!
I have given up trying to sort her room while she is home as it is impossible as everything is so important to her And I always avoid jumble sales e.c.t because I know we end up with more than I donate. I got my partner to put up 3 of the canvas shoe holders on her wall as the pockets are small (she is obsessed with miniature things) and just perfect for her 'treasures' also I don't have to hunt very far for things.

Not only are my 2 on the spectrum hoarders but they will touch, play with and break other people's stuff if allowed in their room without realising they shouldn't have touched it in the first place. Also they can't settle for sleep unless they are the only one in the room.

[Melly1]

Deborah,

it sounds like the agency don't really understand asd. Having poor organisational skills, being unmotivated to keep the house clean by the importance of health and hygiene and being unable to direct the PA are all typical of asd. An agency that did understand asd would put routines and schedules in place to support your brother.

Would it be worth involving the LA in this as they are the ones funding the care which is currently not meeting your brother's needs.

Melly1

[AspieMum]

This made me My daughter is 8 she has Aspergers ADHD and loads more, she is a terrible hoarder pieces of paper that have been cut up/shredded, bits of material, clothes that don't fit pretty much anything and she stashes them (we call her Squirrel) She loves bags and has tons of them which she uses to put her things in then hides the bag and forgets where My earliest memory was going into her room and it stunk after much searching we found a bag with a lump of moldy cheese in. Jazz used to come home from school and when she took her shoes off they would be full of things she had found stones, coins, blue-tack, bits of her lunch, pencils pretty much anything!
I have given up trying to sort her room while she is home as it is impossible as everything is so important to her And I always avoid jumble sales e.c.t because I know we end up with more than I donate. I got my partner to put up 3 of the canvas shoe holders on her wall as the pockets are small (she is obsessed with miniature things) and just perfect for her 'treasures' also I don't have to hunt very far for things.

Twin1 keeps all kinds of rubbish and calls it 'memories' (his diagnosis is Autism and is also suspected of having ADHD)

[AspieMum]

I have two boys and although they are both on the spectrum they are chalk and cheese in absolutely everything

Son No 1is AS and ADD and his bedroom is 'after the earthquake' state - can't even see the carpet, but he knows where everything is

Son No 2 is ASD and has a very tidy well-organised room, but can never find things as if they aren't where he expects them to be he doesn't make any attempt to look anywhere else

They used to share a bedroom but neither one could cope so had to separate them for the sake of my sanity

If my twins shared a room we'd be kicked out of the house for disturbing the neighbours sleep as no one would get any sleep at all including the neighbours. My oldest can't share with either of them either.