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!

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 a clever and talented daughter who I hope will appreciate that she comes from a long line of feisty women, who weren't afraid to be a bit different.

An 'aide-memoire' for Chloe Smith

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.