Wednesday, 21 November 2012

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.]

Saturday, 10 November 2012

Remembrance

This Remembrance Sunday actually falls on Armistice Day; 11 November, 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 earlier this year, 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, who died last year, 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 recently 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.

Tuesday, 23 October 2012

Jolly Japes with an Autistic Teenager


Image courtesy of Simon Drew, Dartmouth


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....

Thursday, 26 July 2012

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.

Thursday, 28 June 2012

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.

Monday, 30 April 2012

Once Upon a Time...

We took the girls 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!



Thursday, 8 March 2012

International Women's Day: Close to Home

This is my great-grandmother, Emily Marsland (with my mother). Born in 1848 in Sale, Cheshire, she married a local joiner, and moved south with their eight children to follow the work. She always said that he could drink away his wages, but if he ever laid a finger on her or the children, she would throw him out. He did. She did.



This is my grandmother, Frances Howitt (born 1888; shown here in fancy dress). After a broken engagement to a young man who came back from the Great War destroyed by what we'd now call PTSD, she married my grandfather in her 30s. She had always wanted a large family, but after her first child (my mother) was born, she was told that it would be dangerous for her to have any more. She brought my mother up single-handedly while my grandfather was in the far east with the Royal Navy, and was actively involved with the local Spastics Society (now Scope). She continued to help with Darby and Joan  and other clubs well into her 80s, referring to "my old ladies" (many of whom were younger than her!). Once, in her 70s, my mother mentioned that she had managed to ladder her tights. "Damn!" she said, "Must have done it while I was running for my bus." She lost her sight to cataracts in her 80s, but undeterred, she taught herself Moonwriting (a type of Braille designed for those who lose their sight in old age), and wielded her white stick like a scimitar! 


This is my mother. Denied a grammar school education by a teacher who did not enter her for the 11+ because she did not think my grandparents could afford the uniform, she attended a Commercial school and gained sufficient secretarial skills to gain employment with Royal Insurance. Since this was wartime, she soon found herself in a responsible role (she also had to do Fire Watch in the office at night to guard against incendiary attacks, although, to be fair, the nation was probably more at risk from her forgotten cigarette ends than from the Luftwaffe!). At the end of the war, the men returned and she was faced with effective demotion, so she decided to resign and start her own dancing school (what she had wanted to do all along). People were incredulous - giving up a good job with a respectable firm in order to run her own business? And a married woman, too!


She stuck to her guns though, and the business survived longer than the marriage. She met and married my father in the late 50s, although both have said that a few years later they would probably not have bothered with the wedding, but cohabitation was still not 'the done thing' in 50s Kent. They celebrated their 52nd wedding anniversary last summer. She ran not only the school but, with the help of my dad, a local theatre group; she, though, was the name people knew - dad was very much the 'consort'!


And me? I defied my teachers at 18 and refused to apply for university, choosing to attend in my mid-20s and doing a subject of my choosing rather than an extension of my A level subjects; I de-camped to the US for a year leaving my then-boyfriend/now-partner at home. I am still defiantly holding out against marriage after 24 years of happy cohabitation, and have two clever and talented daughters who I hope will appreciate that they come from a long line of feisty women, who weren't afraid to be a bit different.



Tuesday, 7 February 2012

Dickens: A Warning from History

Today's Dickens celebrations, including the news that Jeremy Hunt gave out copies of Dickens' books at today's Cabinet meeting, have got me thinking about the world he portrayed, and how far we have come since then, especially for the poor, sick and vulnerable.


As I've discussed before, there are a number of challenges having a disabled family member, and we have often reminded our children how different things would have been for my daughter if she'd been born in earlier centuries. 


We come from hearty stock, and most of our ancestors appear to have lived to a ripe old age (although one can't be certain how many babies never made it as far as civil registration - long gaps between birthdates indicate there were some stillbirths.) When I went into labour, my daughter's umbilical cord was wrapped round her neck. After 3 full days in labour and still no progression, despite lots of medical intervention and inducement, she was born by emergency C-section. The chances of a successful outcome for baby or mother under these circumstances in Dickens' time would have been pretty low. Thanks to the NHS, we got all the help we needed in a well-equipped hospital. 


Epilepsy. Nasty condition, and can still be fatal, but thanks to modern medicine it can usually be controlled, even to the point of brain surgery in extreme cases. None of this was available in Dickens' time. It is extremely likely, therefore, that my daughter would not have survived the prolonged seizures she had at 6 months old. It was phenobarbital (1902) and carbamazapine (1965) which helped stabilise her condition. 


Similarly, her Sturge Weber Syndrome (first identified 1879) would not have been noticed as a potentially serious health problem. Instead of losing the sight in one eye, she could well have lost both, as there would have been no healthcare to monitor her sight (every 3 months, from birth).


Of course, an early death would have precluded having to address her autism (a condition which was still a hundred years away from being identified when Dickens was writing). For all those people who say "Why have autism rates risen so much recently?" the answer is, in the main, better diagnosis. In the past, such children would have just been classified as 'simple' and, in an age where a child was effectively an economic unit, a burden on a poor family. High infant mortality would have prevented many such children reaching adulthood, as disease and poor conditions took their toll on those least able to fend for themselves.


So, all in all, better to be born in the 20th century. 


The 21st, however, is looking decidedly less rosy, as attitudes towards those who are "different" are becoming more hostile. Dickens wrote of the appalling social conditions and inequality he saw in Victorian Britain as a warning. His writing inspired social change. Maybe Jeremy Hunt's gifts to his colleagues should come with an inscription that reminds them that these are works of social commentary on a society riven with inequality.... 


....and are not an instruction manual.

Monday, 6 February 2012

Let Them Eat Cake: #5633 in a Regular Series.

Here we go again.....


Maria Miller, the Under-Secretary of State for Not Having a Clue says there is "no shortage of jobs"


Let's leave for the moment that fact that there IS a shortage of jobs (400,000 jobs for 2.96m unemployed is "a shortage" - you'd think, having studied Economics at the LSE, she'd have grasped this). Her assertion that it is down to people's lack of "appetite for the jobs on offer" is insulting to all jobseekers, but especially so for the disabled (or those who care for them) who want to work, but can't.


Many disabled people do work and most want to, if they are able. It is not that their 'skills' do not match; it is the access to and flexibility of these jobs which determine whether disabled people can take them, and too often there is still a mis-match here. Every time you've whinged about the attention a colleague is getting as he's measured for a specialised office chair due to a severe back problem, consider how much more you'd resent him if he gave up work and relied on disability benefits? It's simply not true that disabled people don't want to work. And have you noticed how 'flexible' working almost always means flexibility for the employer rather than the employee?  "Can you fit with these odd work patterns? Then welcome!" 


She's right on one thing - it's not just about the jobseeker, but also their family, and this is particularly important for disabled people, whose families are already disproportionately affected, and where family cohesion is tricky even without the demands of a low-paid, long-hours job.


Regular readers of this blog (and my Twitter followers) will already know how challenging caring for a teenager with Autistic Spectrum Disorder can be. This didn't evolved in a vacuum, though. When she was born, we were much more preoccupied with the diagnosis of Sturge Weber Syndrome, the prognosis for which was very variable and generally not good. Despite this we tried to lead as normal life as possible; I returned to full time work when she was six months old, despite her epilepsy, which manifested at the same time. We were advised at the time to apply for DLA for her, but we resisted, as we didn't feel that the demands on us where any greater than any other child of her age. By the age of three, and within days of starting school, it became clear that there were some fairly major behavioural issues to be addressed (not unknown with SWS). We, and school, struggled for several years to deal with this, and despite her statement and 100% (at one point 200%!) 1:1 support, it was touch and go whether we could keep her in school. Multiple exclusions, regular calls at work for one crisis or another, it was exhausting and demoralising. Her additional ASD diagnosis came in Y3, which helped a little, as we at least knew what we were dealing with and could try and devise strategies to help her. Throughout this time, we both continued to work - we were lucky in having understanding employers (we were also both conscientious and good at our jobs, which helped) and good after-school/holiday provision. Even with support, though, it was very difficult, and took its toll on us emotionally. Still we didn't claim DLA, despite advice from doctors that we should.


Oh. And did I mention the glaucoma and detached retina, which claimed the sight in one eye just before her 11th birthday? We carried on working through the operations, radiotherapy, 60-mile rounds trips to hospital, going cap-in-hand for special leave when we had exhausted both annual leave entitlements. 


Just before she was due to transfer to secondary school, I was made voluntarily redundant from my outsourced, former local authority job. We decided that as school transition was likely to be traumatic, it made sense to live off my severance money to allow me to be available to help her. And so it's proved. I stretched the severance as far as I could, and then - finally - persuaded my partner that we really should claim the DLA to which we had probably been entitled for 13 years. As the claim was approved immediately, without recourse to appeals/tribunals,  I assume I was right on this.


Adolescence isn't easy at the best of times and the additional anxiety and confusion it causes for those on the spectrum is unimaginable to the neurotypical. It would be nonsensical to try and return to full-time work for the next couple of years - she is, if anything, coping less well than she did in Y7, and it is vital that we keep her in school and (hopefully) get her some GCSEs (not the full EBacc - sorry Michael!!) if she is to have any chance of meaningful employment. As it is, her prospects are pretty bleak.


And as for me? Today she said "Why don't you get a job?", seemingly oblivious of the amount of time I expend simply trying to get her to comply with everyday tasks. A lack of empathy, sure, but then, she is on the spectrum. What's the excuse of the general public or their cheerleader Maria Miller?


It is not the skills I lack, Ms Miller. It is the availability of work which I can mould around the needs of my child. I spent ten years trying to juggle work and caring, and I sometimes wonder if I didn't put work before family too often (after all, my employers were paying me and I had entered into a contract with them). Here's what I need to be able to work and care:


Term-time only - Holiday childcare for secondary-aged children is patchy, expensive and of varying quality. Sports camps are not viable, as they require co-operative working in groups, and are frequently noisy. If she struggles in school, where staff and pupils know her, there is little chance of her coping with strange faces and (possibly) unsympathetic peers. There are some schemes for disabled children, but I'm wary of this compartmentalisation and anyway, funding for these is being squeezed. Apart from any other considerations, she finds school mentally exhausting and she needs (as do most teenagers, actually) to use the holidays to recharge her batteries. 


Truly flexible - and no, I don't mean the night shift in a 24hr supermarket. Something home-based, so I can work through the good days (rare) where I get no interruptions, yet be able to drop everything and deal with a crisis. I'm keen and willing to work, but cannot currently commit to standard hours or travelling. With 20+ years' admin/managerial experience, there should be something I could do from home (which, we're told, is the way of the future), but I've not been able to find anything so far. 


Security - the one thing you really can't do where ASD is concerned is introduce uncertainty. Any job I do will need to be sufficiently ordered that it doesn't present too many fluctuations. For that reason, self-employment isn't really a good option. Trying to build a business simply isn't compatible with caring for someone on the spectrum (especially if, like me, you are profoundly non-entrepreneurial). I know, I had a go at it, with spectacularly little success. Given how many businesses fail anyway, and given the dire economic climate of the next few years, you really need to give it your full attention, something you cannot do if you are a carer.


I may be the primary carer, but it's a family enterprise. My partner, after a full day's work, is there to take some of the strain when he gets home, and my younger child accepts that she will be subject to a level of neglect which other children could not comprehend. Her needs are not even taken into account in the DLA application process, although she is massively affected by her sister's condition. To keep the family together (and therefore avoid additional strains on the welfare budget) I need to ensure that I'm there for all of them and when they need me. After all, we want to discourage family breakdown, don't we?


I don't expect to be able to command anything like the salary I did before (which, I hasten to add, was still only just about the national average after 22 years), but we took a 50% cut to the household income to care for our child, so you can't say we didn't make sacrifices. We saved the country 13 years' worth of DLA payments, by meeting the additional costs of my daughter's disability ourselves, despite modest incomes (and yes, I am looking at you, David Cameron).  At present, I'm doing a full-time job for £55pw - no 20 days' annual leave entitlement, no opportunities for promotion, no trade union (although plenty of moral support from my fellow Twitter ASD friends). It's long-hours, I'm subject to regular verbal (and sometimes physical) abuse, and I have no recourse to any protest. We're working, but there is no money for much beyond mortgage, food and utilities. Our sofa needs replacing (the arm has split and the foam is spilling out), the carpets are nearly 20 years old and are getting dangerously threadbare; the recent wet weather has exposed weaknesses in the pointing on the front wall,which is allowing moisture to seep in. None of these will be addressed any time soon.


Now, I'm sure she will claim that she is talking generally about unemployed people , but she is the Minister for Disabled People, and so most people will assume that she is talking about the disabled seeking work. Yet another neat little smear tactic. Seemingly, Miller doesn't make the connection between getting (and retaining) a job and the impediments to that which the Welfare 'Reform" Bill creates. Almost everything she says could be justified if the WRB wasn't undermining disabled people's ability to retain their jobs.


"Every family should be a working family" says Ms Miller. Well, we are, and I am. I find the sneering assertion that I have "no appetite" to work deeply offensive.

Thursday, 2 February 2012

Why I Won't be Joining You for a Drink...

Dear Dad


I know you and mum have always voted Conservative (I don't think I ever met a Labour voter while I was growing up), and that we have, over the years, had our disagreements about politics. I also suspect you wonder where you went wrong with me - and no, it wasn't 


a) taking Sociology O level 
b) moving to Manchester; 
c) falling in love with a socialist 


that made me reject your politics. It was: 


a) working for 6 years for a Tory council (including during the Miners' Strike) 
b) getting away from the Home Counties and seeing how the rest of Britain fared under them
c) working for an inner city local authority


You may not have noticed it, but I had moved to the left before I left Maidstone. I was one of only 4 people of my acquaintance who admitted to voting Labour or Alliance (for tactical voting purposes) in '87. Presumably everyone else thought Anne Widdicombe was a better bet?


Despite our differences (and despite our family discussions sometimes resembling Til Death Us Do Part) we've always managed to agree to disagree. I know you're not comfortable in the north and don't really understand the culture (you think I don't notice that you get twitchy once you hit the M6?), but it's my spiritual home. I came here nearly 25 years ago, and it has felt like 'home' from Day 1. I guess we'll just chalk that up to us being different as well. You brought us up to take an interest in politics and the world around us, and to think for ourselves. Mum always reminded us that women fought and died to get us the vote and that simpering about "not understanding politics" was simply not on. That we eventually came to different conclusion proves that you both did your job as parents, and produced free-thinking individuals who took their politics seriously.


Of course, I should have been ripe New Labour fodder - left-leaning offspring of Tory parents (just like Tony Blair!), but the New Labour project didn't do much for me. Too relaxed about the filthy rich, too keen on bringing the private sector in (has it ever produced a better, cheaper public service? No.). But the nation became, for 13 years at least, a little less nasty, a little less judgemental, a little less selfish. 


Which brings me to the Coalition


And the Welfare Reform Bill.


Of all the ideologically-driven dismantling of the State that this shower are heaping on us, this really is the most venal.


http://networkedblogs.com/ttfa3


This, dad, is a beautifully-written piece by a disability campaigner who has been trying desperately to prevent the atrocity played out in the House of Commons yesterday. 

She and others have put their own health at serious risk to do this on behalf of people like Sally and Megan (Sue Marsh was rushed to hospital last week, when the campaigning made her critically ill).

Corporate and personal tax avoidance/evasion accounts for far more than this legislation will save, so it will have a neglible effect on deficit-reduction. It's just an act of spite by an un-mandated coalition of those who couldn't get elected and those who came a poor third. None of these 'reforms' were in any party's manifesto and some of the provisions were actively voted against by the Liberal Democrats at their conference and yet their MPs meekly followed the Tories through the lobby to condemn thousands of the most vulnerable in our society to poverty, isolation and dependence on crumbs of goodwill. 

This has nothing to do with "fairness" or "ordinary, hard-working families" (many of whom will actually be clobbered by the changes to Housing Benefit in an unregulated private rental market). When they realised they couldn't win by fair means (by, say, getting their facts straight), they resorted to lying and cheating. The BBC, which you frequently tell me is so left wing? Currently running programmes like "Saints and Scroungers" (ooh, look, Dominic has his cross face on! And look - let's see who "deserves" support!), cementing the impression that fraud is rife (the fraud rate for DLA is 0.5% of total budget), and running news items about families with 7 children. The press and TV has been complicit on doing the Coalition's dirty work for it, by drip-feeding the impression that anyone who receives money from the state is a 'scrounger' (MP's expenses, anyone?). And it's working. Most "normal" people (to use IDS's charming phrase to distinguish them from disabled people) think "Look, they've got a telly. I don't have a telly like that. Why should they have a telly?"

The principle of "anyone who's got something I haven't" determining "unfairness" is becoming entrenched in public life. Just as white supremacists in the Southern US convinced poor whites (whose only 'superiority' came from pigmentation) that black people were out to get their jobs/wives, etc, so the Coalition of Millionaires is convincing people on low incomes that the shit wages they get paid by firms making millions and shunting profits offshore, allowing HM Govt to subsidise their low wages with tax credits, are OK, and that somehow those with no work are somehow getting one over on them. It's not that benefits are too high, it's that wages (for most of us) are pathetically low. Persuading the "dumped-on bottom" to vote against their own best interests is a neat piece of sleight of hand.


Here's another blog, from the excellent Sue Marsh (as above) about their tactics:


As I seem to remember you telling us as kids, life isn't fair. It's not fair that your granddaughter was born with a lifelong disability, or that your energetic, Morris-dancing, 'running two jobs and a family' daughter should be struck down with a debilitating condition in her mid-40s. But governments should be there to shield the most vulnerable from unfairness where they can, and yet the Coalition are happy to simply asset-strip the Welfare State in preparation for their mates in the US insurance industry to come in and make a killing (how likely do you think it is that Meg will be able to get medical insurance, by the way? Pre-existing and congenital conditions will usually rule you out (or they'll take your premiums and then refuse to pay out on a technicality).

You and mum have had long and productive lives, nurtured and supported by the state (rationing to keep you healthy in wartime, the NHS, secure employment, a long, comfortable retirement). You may not have had to call on unemployment benefits, or much other state support (although the Family Allowance was useful), but the State was there, indirectly, for "ordinary, hard-working families" for the whole of your adult lives.

Contrary to what Osborne (that great economic genius) would have you believe, Labour did NOT trash the economy. Certainly they made mistakes (trusting bankers to act honourably being the big one), and, even if they had, there is no excuse for the kinds of cuts the Coalition are making. No-one but an idiot believes that no cuts are necessary, but it's where you make them, and who you hurt the most, which counts. In this case, it seems to be "those least able to fight back." 

I love you both and wish you both continued health - the NHS may just about survive you, but its future doesn't look promising. Whether my generation, or your granddaughters', will ever know job security, secure healthcare or retirement, is looking distinctly unlikely at the moment. The secret appears now to be "be born wealthy."

I survived the Thatcher years and thought we would never again go through anything as bad again, but how wrong I was. Having seen the depths to which the Tories and their LibDem enablers will stoop, I will (to borrow a phrase) never forget and never forgive. 

And that is the reason why I won't ever be able to join you at The Conservative Club for a drink...



UPDATE: In the 4 years since this was published, things have moved on. We now have an even more hateful government than the coalition, for a start. I have occasionally had a drink in the Con Club with my folks (as their advancing age limited their desire to go further afield). Dad has recently been diagnosed with terminal cancer, but we have managed to get him back to the Club for a drink before the morphine makes that kind of expedition impossible. It was a lovely session, with the whole family there (and possibly a record for the number of Socialists present - 4!).

Everything else I've said about the Tories remains valid.