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.]

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.

#asdmornings: When a Tweet's not long enough....

We had anticipated some problems this morning. We knew that she was not happy about doing Food Tech because she hadn't done last week's class and had therefore not made the puff pastry. The suggestion that she could take in some ready made stuff went down badly. Similarly, she's narky about not being "allowed" to do PE, despite several weeks where despite the best efforts of all concerned she has either refused to take part or has refused to leave the PE building afterwards, to a point where they have arranged alternative provision for this lesson while the school is still a building site (the logistics of getting the girls to PE currently involves leaving the premises by the front gate and walking around 2 sides of the perimeter to get to the PE Dept.).

Still, I heard her alarm go off at 6.45am and when I went in at 7am, she was awake and cheerful. "5 minutes" I said and went off to try and encourage her younger sister to engage with "morning."

By 7.30am, her mood had changed and she was refusing to get up. I warned her sister that she might have to walk up to school (it's cold but dry and not the end of the world not to have a lift), and that she'd need to be ready to leave by 8.00am.

At 7.57am, M complained that she also wanted to walk to school with her sister (despite still being in bed). Younger sister (and this is where it starts kicking off) complains that she didn't know she'd got to walk. This appears to trigger something and M then chases her down the stairs and we end up with YS locking herself in the downstairs toilet for protection, with M barring any exit therefrom. Eventually, YS ventures out and puts her blazer and winter coat on, but realises she can't put her shoes on as they're in the kitchen where M is hovering....

I try to encourage M away from her sister, but as she storms past (throwing stuff on the kitchen floor in the process) she pushes her, full strength, into the coat pegs in the hall. and heads back to her room, slamming the door and knocking more paint off the door frame as she does so.

Tears (YS's and mine) and a hug, and I bundle YS out of the house, and go into the living room to phone school to warn them that M is in meltdown and to request that they don't give YS a late mark, as she has been physically unable to leave the house before 8.15am. As I'm on the phone, I hear the merry ratchet-ing sound of the Chubb key on the outside of the living room door being locked behind me (a security measure we put in years ago when we had four break-ins in as many years, coincidentally the last time the Tories were in charge of law and order).  Can hear the sound of things being thrown around, but no idea what. At this point, YS appears at the living room window. In her earlier panic, she has accidentally picked up her sister's blazer rather than her own. I negotiate, through a locked door, for M to let her sister in and exchange it for the right blazer without causing her sister any physical pain. I think I can gauge her mood from peering through the small crack in the woodwork (this one not of her creation!), but have to hope that I've called it right.

Blazer-exchange seems to go off without major injury and YS scuttles off to school.  I then phone OH who, very sensibly, had left the house for work at 7.10am so he at least knows there is a problem. Offers to come home and let me out, but this seems unwise - the last thing a public sector worker needs at the moment is to be perceived as not being 100% productive. Also phone school, and we agree that it's unlikely I'll get her in, but that I will keep them posted

During the course of these conversations, M disappears upstairs, returning fully dressed for school and announces she's going to go in on foot. She then opens the front door, realises it's only just above freezing and asks for a lift. I try to phone school to warn them of this unexpected development, but can't get through, so I drive her there and phone them from the car park. I walk her to Reception, but her route to her classroom is blocked by a class of girls assembled to make the trek over to the PE building, so we lurk in the foyer until the way is clear. She then goes down to her classroom without a further murmur and appears in a perfectly good mood.

I am acutely aware, as I talk to members of staff and her support team, that I haven't yet had a chance to wash or clean my teeth and my hair is in need of a wash. Still, living with autism means that your sense of social embarrassment diminishes as you do what it takes to get by, and at least I'm not still in pyjamas!

Today was a fairly major version of the pre-school meltdown, but they're far from uncommon. I can never be sure what reception I will get when I go in at 7am, and it can often take 50 minutes to persuade her to get up (while trying to get the 11 year old sorted at the same time), to not wear the same shirt 3 days in a row, to have to judge how serious she is when she says, "if you make me go in I'll misbehave." Mixed in with the autism are the teenage hormones which would make life difficult anyway, but unlike the teenage hormones, there is every likelihood that a measure of this behaviour will remain into adulthood. Part of it is pure manipulation (she behaved better yesterday and was rewarded by being allowed to make peppermint creams and coconut ice for the end of term party), but once the manipulation has started, she doesn't always have the ability to stop it.

Autism is an unfairly invisible disability. Those who know her slightly, and have never encountered her in full meltdown see - quite rightly - what a lovely child she can be, but have no concept of what it's like trying to cope with the mercurial changes in temperament. They see that she is resourceful and resilient, but not that she can only do it sometimes - and there'e no predicting when she won't be able to.

Her sister, as many 11 year olds do, tends to overreact to perceived slights and unfairness. She hasn't yet learned the coping strategy of quietly ignoring the extreme provocation in the interests of self-preservation. That will come with maturity, but it's a lot to ask of her.

It's days like this where I wonder how I am ever going to find work that will enable me to combine caring with gainful employment. I'm reasonably intelligent, a good administrator, even ran a team of 30+ people at one time. At the moment, though, there is no prospect of me being able to go out to work on a full time basis. Childcare for secondary-aged children is patchy, so realistically, I'd be looking at term time only and, with the issues we face on a regular basis, it could really do with being something home-based and flexible.  You're no use to an employer if you are constantly having to rush off and sort out a crisis (with my former management hat on, I know that's the case) and with employee's rights being stripped away, I don't think I'd last long in the conventional work environment, do you?

Which is why, on days like these, I so appreciate politicians and unelected 'representatives' voting to reduce the support I receive through tax credits by 50%. Makes me feel truly valued.

Getting Through

Having a conversation yesterday morning about the upcoming 'Austerity Christmas' we're going to have.


My eldest daughter has high-functioning autism (not an Asperger's diagnosis, but she has no learning difficulties other than the anxiety/behavioural issues which prevent her accessing the curriculum on a regular basis). She's almost 14, and capable of quite sophisticated and nuanced discussions about current affairs (apart from those times when all we can elicit from her is a torrent of expletives and slamming doors when we say something she doesn't agree with*).


We discussed with her the fact that I have given up work to ensure that she can maintain her mainstream education, which has pretty much halved the family income over the last 2 years, and that with her dad employed by a local authority, our one income has been frozen for the same period. Next year, he will also lose several thousand pounds due to a job evaluation which downgraded him because he doesn't "deal with the public", which is clearly more important than, say, collating all the data which ensures the authority draws down the correct funding (Me, I'd have thought both functions have equal value, but that's what happens when local authorities buy in to the 'service economy' model - style over substance). As a result, we told her, we will have to be a lot more careful with our expenditure.


M: "You need to get a job, mum"


Me: "I'm trying to get a job, but there aren't that many around and I can't get a job if I'm going to be called out on a regular basis because there's a crisis at school. I'm no good to an employer if I'm always having to take time off or leave work at short notice. It needs to be something that's home-based, so I can work around you, and it needs to be term-time only, as there's no viable childcare."


M: "Well, I'll start to behave, then."


Me: "But you can't always help your behaviour; it's your autism, and it's unpredictable. 


[We did both work full-time during her primary school career, and it nearly broke us. Despite a family-friendly employer and remarkably supportive managers - at least before I was outsourced to the private sector - it was incredibly difficult to sustain. I came to hate Caller ID - seeing the school's number come up brought me out in a cold sweat. It still does, but at least now I don't have to go cap in hand to a boss and ask for permission to disappear - again.]


OH: "There have only been 3 days in the last 2 years when your mum hasn't been available, and on 2 of those, I've had a call from school and have had to leave work to come and take you home. Do you see why it's so difficult for mum to find a suitable job?"


She didn't. Sometimes it's like trying to have a reasoned argument with a government minister.


Hey! Maybe instead of stacking shelves in Tesco on unpaid workfare, there's a future job opportunity for her as an ATOS assessor - she has at least as much knowledge of her medical/psychological condition as they do and has the necessary rigidity of thinking. She probably has too much empathy, though.


* On re-reading this post, I think she could also have a career as a politician - that sounds very much like Cameron response.

Incandescent

I don't know where to start, really.


Woke this morning to the news headline that Manchester City Council is having to lose 2000 jobs this year, due to the additional £60m savings it has to find thanks to the coalition government's disproportionately swingeing, "that'll teach you to elect a Labour council", cuts to government grants.


Therefore sent my other half off to work in the knowledge that our single household income could be about to disappear just as the last of my severance money runs out.


We are (or were) both career public servants. We're not motivated by high salaries, have no interest in being entrepreneurs and are profoundly disinterested in profit. Both of us, though, are committed to giving something back to the community and our adopted city. At some point in our local government careers, have been responsible for monitoring income and expenditure and ensuring that council tax payers were getting value for money. And we were both good at it.


I got clobbered by New Labour's ill-conceived adoption of the Tory, free-market mantra that the private sector can always provide "it" cheaper and better. My entire team was TUPE'd out to a private BPO on a multi-million pound contract which had previously been delivered (under contract) by Manchester City Council. The council lost 200+ years' accumulated experience, and we (despite the 'protection' of TUPE) lost our local government pension rights and our careers.


We were told that our experience and knowledge of the schemes we had run (at cost) under local authority control were invaluable to the success of the contract and yet less than 3 years later, we had pretty much all been paid off. It seems that the private sector couldn't provide, as first one contractor was ditched and the second realised the job was effectively un-deliverable. I was one of the first out, and had thought that I would be something of an exception. One by one, the more senior staff were offered packages to go away and shortly thereafter an announcement was made that the Manchester operation was being closed down. A few doughty souls decided to relocate, only to have the Coalition ditch the biggest component of the contract, having assured the electorate that they would not do so, putting their jobs at risk.


So far, so similar to a great many other conscientious and hard-working local authority workers who don't (contrary to propaganda from the media) earn vast salaries, retire at 60, get 'free' pensions (we pay into them, just as private sector employees do), sit around town halls drinking tea, etc, etc. (Even last night's 'Midsomer Murders' had the Planning Chief as the murderer!)


In our case, there are additional issues, though. Our eldest daughter has a rare neurological condition and is on the autistic spectrum. During her years at primary school, we somehow managed to maintain both of us working full time, although this was frequently disrupted by emergency calls to school to deal with a behavioural problem which could erupt at a moment's notice. She's high-functioning, though, and has no learning difficulties, so we were keen that she remain in mainstream schooling. My severence co-incided with her transition to high school and allowed us to manage that transition in a positive way. And it's been great being merely a phone call away in a crisis and not having to go cap in hand to an employer to beg for time off to deal with it.


We've also been able to economise on childcare as well, as I've had the luxury of being able to spend the holidays with the girls. Instead of having to rush out of the house (earlier than in term time, as most holiday playschemes start early and finish earlier than term-time provision), they get a chance to re-charge their batteries and lie-in if they need to. 


But here's the catch. As they get older, the options for childcare diminish. It's either not available or if it's there at all, they don't want to go to it, seeing it as 'little kid's stuff'. It's also tricky with a teenager with ASD. Normal expectations on behaviour mean that outbursts which might have been tolerated when she was 5, would now find her thrown out of a scheme. Yes, there are holiday playschemes for disabled children and their siblings, but I'm wary of that 'culture of disability' which means she doesn't mix with mainstream society. It's a tricky one, but in the main, I would prefer to be at home to manage the school holidays myself. 


So, in order to provide the best for the family in terms of meeting the needs of my daughter and the mental health of the rest of the family, I would be far better served staying at home (just what the Tories want women to do!). However, even before the threat of partner's possible redundancy, this was never realistic, so I'm having to look for work which is term-time only, where the hours enable me to meet childcare needs and where the employer would be happy for me to be called away at short notice and to take time off for the multiple medical appointments she has. Well, that's looking promising!


We have never claimed any benefits on behalf of our daughter, either. Although many people told us to apply for DLA, we didn't feel that we incurred any additional expense in terms of support or mobility than any other child of her age and as were on good 'moderate' incomes (let's be clear, though, we were in no danger of losing our Child Benefit) we felt it would be wrong to put in a claim. She walks a mile to school, goes into town unaccompanied (albeit closely monitored by us on her mobile), and can cook her own meal if necessary, so we really didn't feel that we were justified in claiming for her. Hers is an unfairly 'invisible' disability - she is capable of managing with most things, and is an intelligent child. 


We're hoping that she will be obtain qualifications (although this is getting less likely by the day, thanks to Michael Gove's obsession with making all pupils something out of Mallory Towers) and will be able to live independently. At the same time, she is subject to the funny looks when her behaviour seems strange and we need always to be 'on alert' for potential flashpoints. She doesn't need full time care in the usual sense, but we are never off duty - no-one in the current climate of "benefits scroungers", though, is going to accept that my time would be better used waiting at home for the times when there's a problem. In small, intangible ways, her ASD fundamentally alters they way we can live our lives and that's not something the state is willing to pick up the bill for. Profound physical disabilities are easier for the legislators (and electorate) to get their heads around - "poor little mite" syndrome, as I call it - but there are thousands of people for whom a disability is a lifelong impediment to success. How, in this new, "small-state" world where we are all expected to be entrepreneurial, will she manage to maintain a work record?


I've read a lot of people who expected that David Cameron, as the parent of a disabled child, would be sympathetic to (or at least appreciate) the difficulties that this can present to family life, and are dismayed that he appears sanguine about the cuts to disability benefits and local authority support. Now, I'm not callous enough to deny him the grief he felt when they lost their son simply because I disagree profoundly with his politics and world-view; no amount of wealth can compensate for the myriad ways in which living with (and losing) a disabled child affects you. To those expecting empathy, though, consider this. He has never been in a position of having to choose a course of action for economic reasons. For most of us, though, such a choice has to be made. I would love to be in a position where the next 5 years were devoted to my children as they move towards adulthood, but it simply isn't practical. Nor do I expect to sit at home letting the state support me. But the sad reality at the moment is that it is becoming more difficult to get a work-life balance. There were improvements to family-friendly employment of the last 13 years, but most of these gains are being undermined. The attack on existing terms and conditions, threats of further legislation to 'curb the power of trades unions' (Hang on, I thought the Tories had done that? That's what they tell us!), mean that working life, for those of us fortunate to have a job, will be meaner, longer and less-family friendly. For a much more erudite discussion of this particular topic, see this:


http://www.labourlist.org/say-goodbye-to-good-work


I know this post will do nothing concrete to change the situation we find ourselves in (and my partner will almost certainly tell me my time would have been better spent looking for jobs), but it has at least cleared my head of the rage I felt this morning when the radio came on....




UPDATE: Have now applied for DLA, despite partner's misgivings. The irony is that the more we try to help her be independent, the more we have to "hover" to keep her safe. We'll just have to see if she is "disabled enough"...