Thoughts on the Bedroom Tax

All this talk of spare bedrooms - sorry, under-occupancy - reminds me of a press article a couple of years ago about the MP for Devon East, Hugo Swire. In this capacity he is my sister's MP. He was apparently disgruntled that his allowance was cut to £9,756pa, the equivalent of a one bedroom flat. It was also, coincidentally, a little more than the annual rent my sister was paying for the rather small house she was thrown out of after the initial 6 month let because the landlady saw the opportunity to make a bit of money with a cash sale! 

This is in addition to his main £1m family home in London. Apparently, if 'forced' to give up his Devon home, a rather splendid - and large - farmhouse near Sidmouth, he would be unable to bring his family down at weekends and his constituents would see less of him. Of course, he could move the family to Devon (it's not like he's going to lose his seat any time soon) and keep a flat in London - Devon has a load of independent schools they could attend, and even one state grammar school!

The story about his 'whingeing' was, of course, denied, but it got me thinking - surely his reasoning that he needed somewhere for his children to come and stay at weekends is exactly the same as all those social housing tenants whose children/grandchildren visit them on a regular basis, but who are now being told that this is no excuse and that they should just put their family up on a sofabed? 

While it's undoubtedly true that MPs are in a unique situation where they are 'dual-sited', one can't help feel that some are still taking the piss somewhat. 1) Decide where your family home is (constituency or London) and keep your family there and 2) have a one bedroom apartment at the other 'site.' If your family want to visit, just make sure you have a sofabed handy!

Excerpts from Life: Meltdown/Absconding

NOT AS FINELY CRAFTED AS MOST POSTS. JUST NOTES I'VE MADE OF WHAT WENT ON THIS AFTERNOON, SO I CAN REMEMBER IT WHEN SOMEONE ASKS, "ANY IDEA WHAT CAUSED IT?"

Insisted on being taken to Hobbycraft to buy Modroc

Bought that and 3 sheets of Xmas felt

Once through the door, insisted sewing machine be set up

Local authority called. M shouted, slammed doors, throughout call

I went to eat lunch. Complained she couldn't find the scissors. Left lunch to look for them

Abandoned sewing as machine not working well

Started making another plaster cast of hand using sock

Didn't work, so suggested she used clingfilm instead

Shouted because clingfilm wasn't in drawer. Left lunch again to find it (on worktop in plain sight)

Made plaster cast too tight. Told her it would need ot be cut off before it set. Came downstairs to do it. Complained I was cutting her (don't think so) slammed cellar door. Broke panel.

Eventually cut cast off herself

Now demanding I pay her back the £1.59 she spent on it as “my fault” it hasn't worked

Short break:

“Can you top my phone up?” Point out she's just caused xx amount of damage to a Victorian door and thrown wet plaster all over the kitchen.

“Fine. I'll just bugger off.”

Log on to Orange website to top up phone. Then see her leave the house with suitcase

[Phone call from her sister asking for lift, as she'd just been sick. Told her she'd have to walk]

Went to look for her. Checked railway station. Managed to call her. Said I was “behind her”. Phone OH who confirmed he'd spoken to her and she was OK. Went home again.

She came back, dumped bags in hall. Fair amount of verbal abuse. Demanded sewing machine be threaded again.

Didn't work. Demanded toy sewing machine be threaded instead.

Now sewing.

[I'm now hiding in box room with computer.]

Remembrance

Armistice Day, 11 November, was my late grandmother's birthday.

Born in 1888, she lost her fiancee, Bill, to the Great War. He wasn't killed, but returned so changed by his experiences that he was not the man she had waved off. Shell shock (what we would now term PTSD) had left him a broken man. His (understandably) over-protective mother became another obstacle to their lives together and granny reluctantly broke the engagement. Had she not done so, "that red-headed sailor" who kept coming in to the shop where she worked might never have had the chance to become my grandfather. While looking though a recently-discovered photo album a few years ago, my mother pointed out a picture of Bill. Granny had clearly cared enough to keep his picture and to tell her daughter about him.  It cannot have been an easy decision - my grandmother was a wonderful, caring person, and I just cannot see her breaking the engagement through self-interest. 

Her three brothers, Harold, Percy and Ernest, all volunteered and all survived.

Harold and Ernest, Canadian Expeditionary Force

Percy with his wife, Bessie

Through sheer good luck and the right birth dates, our family has been fortunate - we did not lose any family members in either World War. My maternal grandfather Albert (the "red-headed sailor") served on Royal Navy minesweepers, but came through unscathed. My mother remembers him talking of seeing men's hair turn white overnight through shock/cold and the guilt he continued to feel about the sailor who tried to commit suicide on his watch. The man had asked my grandfather for the key to the armoury. When Albert asked why he needed it, the man jovially replied, "I'm going to top myself, sir." Unfortunately, he wasn't joking. In the ensuing attempt to save him, a panicked young rating asked my grandfather what he could do to help - "Should I put a tourniquet round his neck, sir?" - the phrase passed into the family as shorthand for those occasions when all hell is breaking loose and no-one can think clearly what to do. Again, there is a photo of this victim in the family album - I don't know his name, but he is remembered. 

Albert

My paternal grandfather had 'a good war'. Prior to the outbreak of war he had been a chauffeur to the Earl of Guilford. He became an Army driver in the Royal Army Service Corps and was ordered to drive across France, which he did without apparent incident, and spent the rest of the war in Cyprus where he "barely heard a shot fired in anger" (according to what he told my father). 

When World War II threatened to take the sons of those who had survived the Great War, we were again a lucky family. My dad, born in 1930, was too young to serve, but claims to be Maidstone's first civilian war casualty due to the cut knee he suffered running home from choir practice at the declaration of war in 1939. The news reached the choirmaster who urged the boys to "hurry home to your families!", which they did. In his hurry, dad tripped over a gravestone and went tumbling....

My lovely uncle Bill was 8 years older than dad; he loved technology - gramophones, crystal sets, etc, and he and his friends heard about men being wanted for war work - "something to do with radios". When he was called up he found himself released on detachment as a civilian to Beamanor in Leicestershire.

We never really knew what he'd done in the war (when asked as a little girl what her daddy had done in the war, my cousin replied, "He wasn't in it!"). It was only much later that we discovered that Beamanor was part of the Bletchley Park operation and that Uncle Bill had spent his war intercepting the transmissions which the Bletchley Park team then analysed and de-coded. Of course, this work was still classified until recently, but he was such a modest man that he would never have bragged about it. He was immensely proud of his work there, though, especially when the work was recognised in 2009:

After the war, he (like my grandfather) joined Kent police and spent his career as a village bobby (the family called him The Chief Constable of Plaxtol) and spent a long and happy retirement in Devon.

So my family will have a lot to give thanks for on Sunday. That our loved ones came through two world wars makes it all the more important that we remember those who did not. 

I don't need a celebrity-style glitter poppy to demonstrate that I care - just quiet reflection on our good fortune and the sacrifice made by others.

Jolly Japes with an Autistic Teenager

Image courtesy of Simon Drew, Dartmouth

http://www.simondrew.co.uk/

A trip into Manchester this morning, as I needed to buy a cheap white T shirt for younger daughter and pay two (very rare) cheques into my bank account. OH has also suggested that it might be a good idea to take the half dozen CDs M wants to sell into Vinyl Exchange, so we bag them up. M announces she wants to go the the building society to take some money out to buy paints and canvases for her art work. Not convinced this is the best use of her limited savings, but as a) I don't have the money to buy them for her and b) she's still not getting any work from school, I agreed she could.

"Oh," she said, "and they wanted to see my birth certificate next time I go in, so I can update my signature." Cue unexpected hunt for her birth certificate just before we should be going to catch the train....

We get into town and catch the shuttle bus with no problem, although her insistence on me always walking ahead of her can cause some logistical problems getting on and off the bus. I, being well brought up, always hold back for her to go ahead of me, forgetting she can't cope with going through a door first. Catches me out every time - you'd think I'd be used to it by now. We look a little like Laurel & Hardy negotiating a swing door!

First stop is her building society. Once she's taken her money out she wants to head to the shops, but I tell her that I have to deposit the cheques into my bank account. She refuses to come in, choosing to hover near the doorway. Instead of staff, the bank now has lovely shiny foyer filled with self-serve machines and piped music playing "My Boy Lollipop" (can't help feeling that this lacks gravitas - not that I'm advocating a return to the fusty old, pre-Mr Banks-in-Mary-Poppins-style bank, but still....)

After two failed attempts to deposit my cheques, the machine tells me to seek assistance from a human being. Said human being comes over with a lad she describes as her "colleague", who looks about 12 and is probably only there on workfare; she also makes two attempts to deposit the cheques before taking them into the inner sanctum to process them manually. "We don't get many cheques these days," she says, "and if they aren't a standard size the machine can't read them." Ah, progress.

By this time I have a rather grumpy M waiting outside. We head off to the Arndale Centre first, where she marvels at how many people are there on a work day (I was just thinking how dead it seemed) and why weren't they in work? Explained about retirement, unemployment, annual leave, etc, but she is unimpressed by these lame excuses. Sounds just like a Tory.

We spend £3.99 on some canvases and paints in The Works (a godsend for cheap art materials!) and she then wants to go to Affleck's to look for some Hallowe'en gear with her remaining money. I suggest Vinyl Exchange first, as it might mean she has more money to spend in Affleck's. She doesn't like this idea (even though the entrances are within sight of each other) and says she will murder me if we're not offered any money for them.

Unsurprisingly, nothing in her CD collection is of any interest to them and we leave empty-handed; she is grumpy but thankfully doesn't follow through with her threat to murder me!

In Affleck's, she buys some red stripy tights which use up all but £1 of her money. As we head back to the station, she notices that it is approaching 12 noon and, therefore, her lunchtime (Lunch HAS to be at 12pm, even if we would be home by 12.15pm), so she wants to get something from the Greggs at the station. Much as I loathe Greggs, they do have a cheap baguette for £1.30 so I pick that up and give her £1 towards her £1.80 sub she has her eye on.  By this time, the largely empty shop we walked into has a long queue, at which we are to the side. Not wanting to appear to be queue-jumping I try to get her to turn round and go to the end of the queue, but she cannot/will not* turn round, so we stand there for several seconds, both unable to move anywhere. She then says, "it doesn't make any sense paying separately, why don't you pay for both together?" And this is where it starts getting really difficult.....

"OK," I say, give me your baguette and the money, then."

She hands me the £1 I gave her earlier.

"And the other £1" I say, "or there won't be enough to pay for it."

"But that's my £1. I don't want you stealing it."

"But I'm not stealing it. I'm using it to pay for your sandwich."

"But it's not yours."

"I know, but I am buying your sandwich with my sandwich, so you need to give me the all money for your sandwich."

"But it's mine!"

There really is no way around this very literal sense of money that she has (we had the same thing last year, when she left her £10 holiday spends at home and would not accept a £10 note from anyone else, because then she would lose 'her ' £10 when she had to pay someone back. In the end we had to mail the actual £10 note to her rather than me lending it to her and OH bring the original down when he came to join us!) she understands the concept of money, and of 'change', but just not the transferability of coins/notes. 

So we put the baguettes back and caught the train. She scowled at me for the whole journey and deliberately put her feet on the seats (one of my pet hates).

If anyone tries to tell you that someone with high functioning autism is 'easier' to manage, please pass them in my direction. We get versions of this kind of episode every day, along with the door-slamming (her door frame is fast disintegrating), the outright denial of things we've seen her do, the pilfering of any food which is not actually locked away, etc. Imagine every awful moment you've had with your teenager and then amplify it by about 5 times!

True, she does not need 24 hour care in the sense that the government class it. Continence doesn't always translate into being able to manage one's own hygiene, though, and just because someone doesn't need 24 hour physical support doesn't mean that we're ever off duty.  In some ways she is very competent and self-reliant, but we can never guarantee that she won't suddenly panic, and we have to be on hand if/when she does. Five months stuck at home hasn't helped, either; the social/coping skills she had acquired are atrophying

She is currently sleeping in her day clothes and is refusing to change her clothes until *I* find her a school (followers of my Twitter account will know how much I've been trying to do this). It's been five months now since she left her mainstream school and although the Amended Statement of SEN is due today, we know already that it will name the one autism-specialist school in the city which is currently over capacity and with no idea when a place will become available.

[As I type this, she is currently slamming my bedroom door, having thrown all the towels and a can of fly spray on the floor and and jumping on my bed 'until [I] go with [her] to Sainsbury's to buy Hallowe'en stuff']

I have been wondering lately how I can get back into the workplace, to get  IDS and his anti-scrounger chums off our back, but even once she is in school again, it's going to be difficult getting something that will help us keep family life together as well. How will it benefit us if we end up never seeing one another because of work? These outbursts can crop up at any time of day or night and the effect on the whole family can be immense. Unfortunately, autism isn't a 9 to 5 condition. The lack of recognition of the role of the full-time carer is dispiriting. £58 a week is a derisory amount for the work we do and the money we save the state. I'm really not sitting at home baking bloody cupcakes all day - it's damned hard work with little thanks and - seemingly - derided by  those who govern us**!

Oh, and amid all the kerfuffle about CDs/sandwiches, etc I forgot to buy the T shirt, which was my main reason for going into town!

*these two terms are pretty much interchangeable - sometimes it's defiance, but most often it's simply an inability to comply, even if she feels bad afterwards

** Her Majesty's Opposition have a way to go on this, too. Not exactly challenging the 'scrounger' rhetoric themselves....

Just another Caring day

Thought I'd write this one up. In a day or so, it will have melded with all the other meltdowns. After the event, it's hard to remember what happened or what caused it, so....


Back Story: A has wanted her ears pierced for ages. We have resisted it, given the pain in the arse school rules are on earrings and PE, but increasingly all her peers have them and she had even started saving up for it (quite unlike her usual spendthrift self). This summer, as she pointed out, would be a good time to get it done as it gives us the 6 week holiday for them to heal before school starts again. I had made stipulations about behaviour and room tidying and she's spent the first week of the holidays trying to be good.


Suddenly, M decides she wants her ears pierced as well, having never previously shown any interest in it being done. A major bout of room-tidying yesterday resulted in three bin-bags of discarded art work to go to the tip. A, in the meantime, is still trying to tidy her (much smaller) room, but has the spatial awareness and enthusiasm of a three-toed sloth, so it's not been going well.


M, who has already baked cookies this morning (without clearing the mess afterwards), is now bored and wants her sister to record a song on Garage Band; her sister refuses (rightly guessing what my reaction would be), at which point M.....


Hits her sister repeatedly with a bag


Hits me as I try to restrain her from hitting her sister


Throws a shoe at the light fitting


Slams her door so hard that more of the paint falls off


Throws stuff around her previously tidy room


Chases her sister round the house until she locks herself in the bathroom, at which point M hammers on the door, resulting in petrified screams coming from A.


Announces that she won't be going to visit her grandparents/aunt/cousin next week, and that even if she did she would be rude to them; she also won't be going to her new school at all unless they let her in for September and would rather be  "in a mental home"


She then retreats to her room, and all is quiet.... until she emerges and throws a toy at the back of my head. A bear with a bean-bag heating pad in it which therefore has quite a bit of weight. That hurts when it hits you unexpectedly from behind.


5 minutes later, a neighbour knocks at the door asking to play. As if a switch has been thrown, she is all sweetness and light, "Sorry, mum!" and "Can I play out?"


Another meltdown ends.


This is just one of  hundreds of episodes we get from her. They arise from seemingly nothing, cause untold  upset and can then be gone just as quickly. You can hardly ever anticipate them and can't always diffuse them. We just have to react as best we can. 


I wonder if Ian Duncan Smith gets punched and has heavy objects thrown at him as part of his job? Does he have to worry about other family members being at risk? Does he know what a weighted stuffed toy does to the back of your neck when thrown with force?


I thought not.

Not disabled enough... life with 'high-functioning' ASD

About a month ago, we reluctantly reached the conclusion that M and mainstream education had gone about as far as they could together. Even before the police got involved, we were about to approach her school with a view to changing provision. 


She has been at home for nearly 6 weeks now and is refusing to engage with the work set by her school on the not illogical grounds that if she's not going back, there is very little point to doing it (ASD does not necessarily mean lack of critical analysis). Technically, I am home educating until the school we all agree is where she should be has a place available (Manchester's penchant for closing special schools means that the only ASD-specialist school is full to capacity, having recently had to take 30 new pupils at once). She is bored and resentful, and has consequently been pretty aggressive and difficult to manage. Having always said the last thing I wanted to be was a teacher, I am now having to fulfil that role with no training or experience and with a 'pupil' who refuses to engage. I have no resources (and no income to buy any), but have been trying to engage her with the art/design work which is her real strength.


In order to give her a bit of a break (and me a bit of respite!), I took her away to my parents' for a few days, in the hope that getting out of her normal surroundings might cheer her up a bit. She spent some time with her cousin, I got a night off when she had a sleepover at my sister's and she was generally pretty well-behaved (odd non-compliance/sulking events notwithstanding).


We came home yesterday, at which point she insisted on going out on her bike as soon as we got home. I was reluctant, but as she had been cooped up in a hot car for 250 miles I though it might do her good to get some fresh air.


This morning, we're back to normal routine. She is still refusing to engage with any school work and wants to be taken to the local Hobbycraft shop to buy art materials. I said "maybe" (in reality, I am all spent out this week) and that this would depend on behaviour during the day. Then she asked to go out on her bike again. I said not during the official school day. This is when it kicked off. Things thrown, swearing. she has now stormed out of the house, with no watch and no phone - I suspect I will soon get a call from school saying she is hanging around the grounds again, but I'm not sure what I can do - she is taller and stronger than me and I cannot physically restrain her.


This is the trail of destruction she has left in her wake....

The tape measure she threw at her keyboard

The stuff she pushed off of the ottoman in our bedroom (in case you're wondering about the bare plaster on the wall, just another job we don't have the time or money to do)

"Is there anything breakable in here?" "Probably, yes." Drops crate and breaks it.

....and her sister's pottery.

All these may seem low-grade, but they are an almost daily occurrence and the cumulative effect is hard on the rest of the family. Her sister's birthday is coming up this weekend and she's supposed to be having friends over for a sleepover. Quite how we manage that one will be interesting....

 She hasn't (yet) attacked me physically, but the pent-up rage is palpable.  She has to try and get to grips with her emotions before she reaches adulthood - imagine some hapless Tesco manager trying to get her to do something she objects to as part of her open-ended "work experience" - and being cooped up with me is not helping. She needs the place at the right school - we just have no idea when this might happen.

The irony is that she is classed among the coalition's "not disabled enough" - those who do not attract high-level care/mobility and whose benefits are being reduced to ensure it goes to those "most in need" (how's that for divide and rule?). She may not need 24hr supervision, and is perfectly capable of preparing a meal (if she wants to!), but that doesn't mean that her demands on us are less, just different. A friend of mine once said, "My god, you're never off-duty, are you?" While we do get glimpses of "normal" family life, and while she can be delightful when she's on form, don't let anyone tell you that caring for a person with 'high-functioning' autism/Asperger's is easier than any other form of disability.

Once Upon a Time...

We took the children to the Imperial War Museum North yesterday, as it has an exhibition of children's books about war, Once Upon a Wartime, in which they had both expressed an interest. Wandering around the exhibits, I noticed this poster:

It struck a chord with me, being a carer and all that. And it made me quite sad that attitudes have become so hardened against those in need today. This same poster could be used in reference to those people who care for sick or disabled people - "It Might Be You" is certainly just as true in terms of sudden ill health or disability - and yet rather than considering this to be 'a national service', our current government (and, shamefully, some of the Opposition) see carers as part of the 'scroungers' demographic.


For the princely sum of £58pw (lower than JSA), carers provide an invaluable public service, saving 'taxpayers' (of which I was one for 20+ years) much of the cost of caring for the most needy in society. I am 'free' to work as well, as long as I don't exceed £100 per week. Of course, finding a job which is compatible with my caring responsibilities (term-time only, with the beginning and end of the day free and where the employer is happy for me to have to dash off at a moment's notice to deal with a crisis) is pretty much impossible at the moment, so the level of pay becomes irrelevant.


My daughter's school see me as very much part of the team helping her to access education (indeed, I spend as much time there some weeks as the staff and pupils), so why does the government see me as a problem? 


"Ah, but that was wartime!" you might say. But even so, both the hosts and the billeting officers received payment for taking/placing evacuees. This wasn't people taking in East End kids out of the goodness of their hearts (Indeed, there are some instances of hosts treating their evacuees very badly), not an early version of the Big Society, doing good works for free. What there was, though, was a recognition by government, that caring was valuable 'work'


By the way, I would recommend IWMN. It's a fine place and especially good if you need to find inexpensive days out!