HOUSEWORK - YUCK!!

Right we are back to normal; whatever that means.  In this house it means that my son has finished his two week break and is, currently, back at his training group and my partner has, after having a mid summer meltdown, back at work; so I can get back to some sort of routine.  Saying that, I'm not a lover of routine which, when you live with two ASDers, is a bit difficult.  I'm much more of a wake up and see what happens kind of person so having the house to myself for three days a week is rather lovely.

So, today, I attacked the 'so called dining room'.  It's a 'so called dining room' as we never actually eat in there apart from when we have guests.  It's actually the 'dump everything off on the table as you walk through the house room' although it does, occasionally, turn into the 'sewing room' or the 'model making room' and if there is no room on the table it's the 'dump everything wherever you can find a space room' including the floor, chairs, trolley, printer, etc; any surfaces you can find really.  Now I haven't attacked the dining room since.....I can't remember to be honest so I knew it was going to be a bit of a mess.  The table was buried under god knows what, there were a stack of cardboard boxes that I was keeping 'just in case' and I wasn't entirely sure if any of them actually had anything in them still and the printer and it's little cabinet it sits on was buried under a pile of paper.  Hmmm, cup of tea required before we start me thinks.

Anyway, three quarters of an hour later and I now have a dining room with a clear table!  Woo Hoo!!!  The boxes didn't have anything in them apart from more boxes, bits of cardboard, some bubble wrap, old newspaper and an interesting looking carrier bag which turned out to be totally uninteresting as it was empty.  Hrumph!  I did find the radiator key (??) on the table along with more random bits of paper, the mechanics of a light/magnifier for making models with, some long red candles, a wind up torch, a bag of Halloween masks (??? again as I know I've tided since then more than once), various tablecloths and a bunch of table mats and coasters, oh and several bits of broken stationery like pens, etc.  Also found my son's training certificates!!!!  Glad they didn't get thrown out by mistake.

I didn't find many dust bunnies; they were more like dust wooly mammoths.  There was a lovely silky cobweb that ran the whole length of the alcove that the printer sits in and the window sill and trolley that sits in front of it looked more like the housefly graveyard than something you can wheel your tea things around on. All in all, pretty yucky!!  But it is now done; yay!

How long it will stay that way I do not know and I'm not taking any bets on how long the table will stay clear although I don't think it will be long.  Tomorrow I'm hoping to attack the front room although that is in a much less awful state; mainly dust to be honest.

I know you are probably thinking that if I did it more regularly it wouldn't end up such a state, but, guess what, I tried that and I just ended up doing it more and more often.  The dust didn't get less, the 'stuff' didn't stop being dumped and the cobwebs still kept coming.  I hate housework, as you probably have already guessed, and for me to do it one day only for it to look like I haven't done anything the next is rather soul destroying for me so I leave it and then attack!!  It doesn't take that long before I've had enough of it and end up doing it and I wouldn't say that my house is dirty, just dusty and untidy. I don't leave food lying about and any spills are cleaned away, bins are emptied regularly and those things that have a place are put back in their place, usually!  I'm just not a houseproud, dust, polish and hoover kind of girl and if you don't like it, you don't have to come in.

Quentin Crisp once wrote “There is no need to do any housework at all. After the first four years the dirt doesn't get any worse.” and I have a little book that quotes "since housework is always there waiting for me, I might as well go ahead and do what I want."

These two quotes are my mantras when it comes to housework, especially the latter one as I'm not sure I'd have the capability of waiting four years for the dust to stop mounting up in the former.  I do housework when the mood takes me and then it's blitzed; the rest of the time I go and do far less boring things and so should you. 

Cya
xx

CAN A YEAR GET ANY WORSE THAN THIS?

THIS IS NOT A RANT ALTHOUGH IT MIGHT APPEAR TO BE!

I've had a shite year!  Thought I'd state that bluntly.  You know why?  Because it's true!  This year has been shite and I think it's about time it got better.

It started off so well.  I was feeling postive.  But after a couple of weeks the year turned into a complete landslide.  I've written about a lot of it in detail already and I won't bore you with it all again, but I want to put it down in some form of chronological order for myself; for my posterity.

JANUARY:  DLA letter saying my son is going over to PIP. So phoned to begin the process.
FEBRUARY:  Got Kent Autistic Trust to help fill in PIP claim and sent it off.
MARCH:  Still waiting!
APRIL: PIP ATOS assessment.  Think it goes ok.
MAY:  PIP refused, meaning we lose £300+ per month and my carers allowance. Chase doctors and hospital for any extra letters we could use in addition to what we have already sent to help support claim. Blood pressure goes through the roof.  Chest pains.  Betablockers and CBT for me! I'm doing it all on my own as partner is also ASD and he can't cope with official stuff.
JUNE: Visit KAT and get letter done to ask DWP to have another look at claim and send it off with all the extra additional information I have found. One of my best mates loses her battle with Cancer leaving behind her husband and young son. Unable to get ECG done as nothing nearby although did tell doc he can refer me to hospital.  He doesn't!
JULY:  Apply for ESA for my son, practically same form as PIP.  Not holding out much hope. Develop dry mouth with cold sore like symptoms, constantly tired and thirsty.  Doc sends me for diabeties test. PIP second refusal.  Send off forms to go to tribunal. Spend more time on the phone.
AUGUST: Get ESA!!!!!  But, then find out we lose Child Benefit because of it. First ever long term boyfriend suddenly dies, leaving wife and 2 sons. I'd only recently been 'talking' to him on FB!!  Get stupid ringing and buzzing in head and ears feel blocked.  Can't get docs appointment, but manage to see nurse who decides to test me for everything.  Ears are clear so probably labrinthitis! Partner decides to walk out from his job!!!! FFS!  But then returns a week and a half later after putting me through more financial fecking stress!

And I'm still waiting on a court date for the PIP tribunal.

I've lost all mojo to do anything apart from starting my novel; probably because I need to escape from the 'real' world.

Now I know I'm not the only one who is having a shite year.  A few of my friends have been having the same problems with PIP and there have been a lot of family/friends falling seriously ill or dying.

My question is what the hell is going on?  We have had a hell of a lot of celebs dying.  We've had all the fall out and fighting over Brexit and Hunting has raised it's ugly head again along with the ongoing fight with regard to fracking.  The world, it appears, has gone insane; Donald Trump anyone?

On a positive note my blood pressure is now fine (if but a little low which, apparently, is normal for me) and I've weaned myself off the Betablockers.  The buzzing/ringing has stopped and I should get blood test results this week.

Can I go and bury myself now?  Let me know when it's all over.

Cya

CAN WE HAVE A 'DON'T CARE' BOX?

Let me start by saying that this is not about whether we should stay or leave the EU.  I’m still on the fence and probably will be until the day.  Why? Well, so far, no-one has come up with a strong enough reason for me to decide either way and, to be honest, I don’t think they will.  I really don’t think that it matters one way or the other for people like me, but then that’s because, to most people, I’m probably thick.

Let me explain.

When I was 17 I had left school, albeit with 5, now archaic, O levels and had had two jobs and was heading to college.  Now, thinking about it, that is pretty impressive.  One of those jobs, admittedly, was working in a café; one was working with the Ministry of Defence.  I left the first job and went straight to the other and when I left that one (and in both cases I left, I was not dismissed) I pretty much took the summer off and then went into college to do my typing and shorthand (typing I still use regularly, shorthand I have now completely forgotten). 

My point is that my son, who has reached 17 today, is not in a world where that would happen.  Jobs aren’t there and no-one appears to want to employ a 16 – 18 year olds unless it’s on zero hours and pittance money, ie, they can only work if they allow the bosses to screw them over and woe betide they choose to leave a job; if they did they’d be tarred for life.  Even if they do manage to find a job that they want to apply for, why is it that nowadays they expect you to have a degree in rocket science just to work in McDonalds!  Two jobs that I left went on to employ people with degrees and yet they had employed me with my scrappy English Lit, English Lang, Maths and Combined Science O levels (Grade C in all but Maths which was a B).  How can employers justify this; I didn’t even have an A level let alone a degree and I did the job just fine.

Needless to say that I find the worker’s rights (ahem, we used to have unions for that until the Gov closed the majority of them down) and free movement of employment a bit of a pointless argument.  If my son can’t get a job here, then what makes you think he’d find one abroad.

And whilst on the subject of free movement of employment in Europe; are we saying that before the EU no-one worked abroad?  I’m pretty sure people still did go abroad and work; take a look at the Victorians, they were bloody everywhere (ok, some of you might be screaming ‘EMPIRE’ at me now).  And I know one of my friend’s dads used to work in Bahrain.

Plus……we also work, emigrate and travel to countries that aren’t in the EU; we have done so in the past and we still do.  I know of a family that, a few years ago, emigrated to Canada. Someone else spent almost a year working in Australia.  Neither are part of the EU, but do have the advantage of no language barrier.  Personally if I was going to up sticks and move, it would be to somewhere where I could understand what was going on around me and that would mean applying, filling in paperwork and all that other stuff you have to do to get into one of those English speaking countries, but, do you know what, I’d prefer to do that (not because I'm racist, but because I can't be bothered to learn a new language).

This brings me to the argument of free travel, as in freely without passports, visas, etc, not FREE travel. This has been another argument to stay.  Really?  Are we really that lazy that we can’t be bothered to fill in some forms?  Of course we’re not otherwise thousands wouldn’t holiday in Florida or New York or Brazil or Australia or China.  If we want to visit a place and spend time there, we’ll make the effort.  We might have to be a bit more organised and it might take a bit longer but we’d do it.  I visited Russia before Glasnost, it was a pain in the arse and some of the inflight aeroplanes looked like they were held together with safety pins, but I went!  I went because it was a beautiful country, even with the armed police on every street corner. It had some amazing people.  One in particular that will always stay in my mind is the lady that looked after our carriage on the overnight train we took. She couldn’t speak a word of English but allowed us to sit in her little cabin and shared her ‘lunch’ with us while we shared what we had, which was basically wine and chocolate; she was awesome!

So, so far the arguments for employment and travel haven’t swayed me to stay.  Neither have they swayed me to leave.

What else?  Oh yes, the EU can keep an eye on our Government!  As in it can protect us from stupid decisions!  Really?  Erm, I site Bedroom Tax, refused PIP for the most vulnerable of our society, lack of pensions and the fact that our Gov has temporary (as in permanently because we, the public, will more than likely forget and it’ll stay in place) lifted the ban on the use of neonicotinoid pesticides (which some say is killing our bees).  Has the EU stepped in? No!  The UN did, briefly, over the treatment of the disabled, but that seems to have died a death (as have many disabled people who have been refused PIP and decided that committing suicide was more preferably than slowly starving to death).  So, to me, on the things that truly matter to me, the ‘man’ on the street, they have done bugger all to keep our Gov in check.

People have mentioned trade to me and if we leave we’d probably lose our car production factories as they belong to China and they won’t want to pay the taxes.  This would also mean we would have to pay more for our tech.  Well, I don’t drive, so I’m not bothered about getting a car and I’m sorry, but paying a bit more for tech wouldn’t be a bad thing.  It might stop the throwaway society that we currently have.  You know the one where everything is still working perfectly, but we chuck it away just because there is a new one in a different colour. FFS!  So, nope, trade isn’t doing it for me either.

On reflection, since 1973 when I was just 10 and couldn’t vote and wouldn’t have understood the impact that joining would have as I was outside climbing trees, pretending my bicycle was a horse (including tying a rope to the handlebars and riding it like that – health and safety anyone?) and scrumping apples from the farm down the road (that, by the way, isn’t there anymore and is a housing estate instead), I haven’t actually seen an improvement in this country.  Like I’ve already said, I could walk from one job to another and continued to do that even after college had finished and there always seemed to be a choice of jobs I could apply for unlike today. People still travel to places with or without the need for paperwork.  The NHS is still there, although you might have to wait six months to a year for an operation in which time you could have died. We don’t have a state pension to look forward to or, if we do, it will mean we have to choose between heating and food.  We have foodbanks everywhere which we never had before.  We used to have university grants, now they are thinking of stopping them; bad enough that we are currently supposed to pay them back!  What happened to education being free? The list goes on, but so am I so I want to wind this down.

I’m not saying that leaving with make things better and I’m not saying that staying will either (as it appears that it hasn’t done much being in so far) and I’m not sure if the downturn in our predicament isn’t just the fallout from Maggie’s money obsessed government (that’s another story) rather than the fact we joined the EU.  To be honest, I’m currently more interested in having a government of our own that I trust and respect rather than belonging to someone else’s over-lording one.  I personally couldn’t give a flying fig about Brussels and what they are up to when our own Gov is driving people into an early grave.  But, I suppose I have to as it’s my son’s future, not mine, that I need to be worried about.

Perhaps, as in general elections there should be a box with ‘none of the above’ next to it, there should be a box with ‘don’t care as it makes diddly squat difference to me’ next to it for the EU referendum.  I can see me, unless someone comes up with a corking argument, going eeny, meeny, miney, mo on the 23^rd.

RANT ALERT (and it’s very long, so get a cuppa)

I haven't written this up on Facebook or anywhere else properly as, at the time, I couldn't bring myself to do it without going into complete panic mode, blood pressure hitting the roof and heart pounding in my chest so badly I debated whether to go to A&E at least three times over the ensuing weekend.  I didn't by the way as I knew what was causing it and knew that if I calmed down a bit, the pain would stop.

I knew it was coming, but the sheer incompetence, non-relevance, contradictions and total lack of understanding was beyond even my belief.  I'm talking, of course, about my son's change over from DLA to PIP (Disability Living Allowance to Personal Independence Payment for those that don't know).  As I said, I knew it was coming.  His DLA ran out when he was 16 and he would have been re-reviewed again anyway but, as PIP was so behind, they continued paying the DLA until PIP applications had caught up so it's now nearer his 17th birthday rather than his 16th.

Now I've heard all the horror stories, both from national news and friends who had gone through this before me.  I knew that the system is flawed, that it cares little about the individual and more about saving the government money (or so it would like us to think it's saving money, but we'll go into that later).  Also I hate the way that some are justifying people not getting PIP because they can work; please note what PIP stands for; personal INDEPENDENCE payment, not CAN'T GO TO WORK payment.  It is supposed, as DLA was, to be a specific payment for those that need more help and more assistance to aid their day to day living and that would include being independent and being able to get extra help, if needed, to get them to work, college or whatever i.e., a specially adapted car or a bus pass that enables them to travel with a companion, etc.  It is not a payment to replace work; it is a payment to help those that are vulnerable, physically AND/or mentally disadvantaged to integrate back into society as much as is humanly possible for them, which, of course, is what this government says it wants.  Hmmmmmm.

My son has an invisible disability.  He can walk, he has no limbs missing, he's bright; in fact in certain subjects (those that interest him) he's rather intelligent, but he does have a disability; it's called Autism!!  That, my friends, is a mental disability.  It doesn't really show unless in extreme circumstances.  Autism, ASD, whatever you prefer to call it, is a spectrum; that means there is a huge variety ranging from those that manage, on the whole, to reasonably cope and those that, not being rude of anything, will sit in the corner and rock, are non-verbal and have no comprehension of the world around them.  It's a very wide spectrum!  My son is somewhere near the OK end.  He has issues, some he can handle, and some he can't.  He has anxiety issues, sensory issues, and social issues.  He doesn't really have a learning disability, although he doesn't get written English at all; he can read, but writing is not only physically painful to him (if he has to write more than a few sentences), but is mentally challenging. He doesn't get the rules as English doesn't really have rules and those that it does, it breaks; often!  He's much more of a maths kid, it's logical, it has wrong and right answers and it doesn't have any 'grey'.

Anyway, I'm digressing; sort of. 

Under the DLA system we received middle rate care and low mobility rate.  Low mobility was because he doesn't like public transport, going to new places, requires a companion for any journey more than about 4 mins away by walking and, even then, will have had to have done the journey many times with a companion before he would attempt alone. He needs familiarity.  Middle rate care was due to sensory issues with clothing, noise, light, etc, social issues like lack of eye contact, not understanding some language (he often takes things literally although he is now learning to recognise starkly obvious sarcasm.)  He has issues with sharp objects, hot things, loud noises, crowds, flashing lights, high ceilings, long escalators, bright lights, routine changes, hates new places and meeting new people. Think Sheldon from Big Bang and you're almost there without the super intelligence.  May I add that he has learnt some coping mechanism for some of them, but far from all of them and, to be honest, all of them will never truly go away.  Autism is for life and he will always need some form of help some of the time.  On top of that he suffers from migraines which include lines across his vision, stonking headaches, blurred vision and, sometimes, a form of tunnel vision.  He also gets depressed!  The world is a scary place for people like my son and to top it off, their condition is not treated seriously for the most part due to that invisibility.

Anyway, back to where I began.  The PIP form came through.  It wasn't that much different to the old DLA form, but there were some changes and a distinct lack of certain questions, ie, sensory issues didn't come into it at all.  Hmmm.  Has anyone ever thought that if you don't like certain fabrics, those fabrics can feel like they are burning your skin; literally burning!  Well, obviously the new system hasn't!  Sensory issues like noise, fabrics, and lights are massive; they are not something you can 'just get over'.  Imagine going into a room which has spotlights on all over the ceiling; the light is almost blinding.  Then imagine that that room also has music on at full blast; you can't hear yourself think, you can't hear anyone speak, people are shouting over it.  The place is packed and you can't move, you're feeling crushed.  The clothes you are wearing are rough against your skin, the button on your waistband is boring a hole in your stomach, and your jeans are burning your legs.  All you want to do is get out.  People are coming up to you and shouting in your face; you're not sure if they are angry with you or not.  You get scared and still you can't find your way out.  THAT is what having Autism is like.  Going into a new place, meeting new people, wearing clothes that others would find normal, going into a crowd, getting on a bus.  All those everyday things we 'neuro typicals' take for granted is an extremely sensory overloaded, stressful and anxiety filling situation.  But that isn't important apparently, that doesn't count, that isn't even a consideration on the stupid form.

Anyway, again, I get a member of the Kent Autistic Trust to come over and help me fill in the form.  That's another thing that people seem to forget, us carers deal with this on a day to day basis, it's our everyday life, it's how our life is, it doesn't change and after a while it becomes 'normal' and we don't often remember what is 'normal' and what is 'autism' as we do it all the time, so I always get help filling in the form.  Form filled in, points roughly checked, under new system, we should get high rate care (??) and low rate mobility; the rates are different now.  I send it off and sit back and wait for the dreaded ATOS assessment appointment to come through.

Weeks go by.  I asked for a PIP application in January, it's now April!  I chase.  Finally get an appointment for end April in DARTFORD, we’re in Gillingham.  We’d have to go by train, six stations and then find the place.  I think not!  I telephone them, tell them my son has Autism and doesn’t like a) public transport, b) new places and c) new people.  He’s already stressed at having to meet a new person; he’s not doing the rest.  The person on the end of the line is lovely.  He states that there is an assessment centre right up the road (still means a bus journey or a very long, uphill walk, but we’ll cross that one on the day) and they have 4 appointments available within the next couple of weeks!  Why, then, did they want to send us to Dartford!  Hmmmmm!

The day arrives.  My son is stressed, but we’ve talked it over almost every day since I rebooked the appointment by phone 2 weeks ago; this is what we carers do for our charges.  We talk it over, we often have to do the route so that our charges have some prior knowledge, we ask questions, we reassure, we deal with the building up of the anxiety (this, in some cases, can include dealing with verbal abuse, physical abuse, full on depression, etc).  Luckily my son hasn’t got verbally or physically abusive, but I can see he is stressed by the lack of communication, him not even wanting to be online with friends and him constantly saying he’s tired.  He understands that whatever I say won’t be taken into consideration even though I’ve been delegated his official appointee (WTF).  I tell him that if he is stressed, doesn’t want to answer, doesn’t understand the question or needs my help in any way, he can ask me.

We get the bus, even though he hates it, he’s tired and doesn’t want to walk.  We arrive, we have to wait. He’s wearing fingerless gloves, a fleece jacket over a T-shirt, fleece trousers and his over the shoulder bag.  It’s threatening rain, but he doesn’t really need the gloves.  We go in, he sits down.  He doesn’t remove the gloves, the bag or the jacket.  The lady introduces herself and she starts asking questions.  My son does his best; in fact I’m proud of him.  He made little eye contact, fiddled with his fingers and strap of his bag constantly and only asked me a couple of times to help with the questions.  He follows her instructions to touch his toes, remove his gloves, put his finger to his nose and stand up and sit down. He falters slightly with spelling ‘world’ backwards, taking several goes but getting there eventually.  He counts down in 7s from 100 fine though.  When asked about travelling he states he hates public transport, he feels claustrophobic, they smell funny, he doesn’t like asking for tickets and only uses it if he is with someone.  He says he walks to his NVQ by himself but that is only up the road, but he doesn’t walk to trampolining lessons as they are a bit further (NVQ is a 3 minute walk I say and trampolining is about 6 minutes).  He says he gets on with his classmates (I tell her that there are only 6 in the class so about the right number for him to cope with and that he couldn’t deal with college numbers as he ‘froze’ whilst on a visit there).  She then asks him “if your mum wants you to help in the kitchen with dinner, would you peel potatoes for her?” (Loaded question I think as if he says no he would feel he is being unhelpful).  He answers with “I would prefer to wash up as I don’t like using sharp things”.  He also adds, although she didn’t ask, that he worries about burning himself on the oven and hob (he’s obviously beginning to understand what she’s really asking and wants her to know the situation fully). “So you wouldn’t cook then if you were hungry?” “No”. “What would you do if you’re hungry” “I’d get myself a snack” (I add that this would mean a biscuit or a packet of crisps or anything that was grabbable and didn’t require any preparing, he nods in agreement).  She then asks “if you and your mum and dad were out shopping and you got lost what would you do?” “Panic” was his reply.  “After you had stopped panicking, what would you do?” (For starters how does she know he would stop panicking?) “Erm, I don’t know, maybe go to the checkout.”  I turn to my son at this point and ask him “what if we weren’t in a shop?” “I don’t know”.  So I then ask “you have a mobile phone, would you think to text me?” “No”.  “Oh, he has a mobile does he?” She pipes up.  “Yes, but he only uses it to text me when he’s on the way home.” I reply.  The interview goes on like this for about an hour.  She says she’s got enough and that he has done well.  Hmmmm, what does that mean?  We leave, he frets about the bus and we walk home.  We go via Subway (his favourite) and he’s calmed down by the time we get home.  I feel ok as he answered honestly; pointing out his worries and fears.

Two weeks later, on a Saturday no less, I get the report back (I’ve asked for a copy).  It is blanket ‘NO’ across all questions.  It says he’s fine.  It says he doesn’t have a physical disability that would stop him doing any of the things that they have asked.  No he doesn’t; it’s a MENTAL DISABILITY you stupid cow! He doesn’t self-harm, so he can prepare food (WTF?).  He can touch his toes, so he can tie shoe laces (???? Magic shoes anyone?).  As he arrived by bus with his mother he can cope with journeys by himself (Yeah that’s why he has a bus pass with companion on it and I gave you a copy of a doctor’s letter stating he needed as much)!  He can count, so he can budget (Erm, I’m his appointee!  He was assessed by a member of the DWP as needing an appointee as he couldn’t budget by himself)!!  He didn’t smell and looked the correct weight for his height so he can cope with washing and bathing and dressing.  (You didn’t weigh him, so how do you know! I ensure/remind him to shower, bring down his clothes and I feed him.  What did you want me to do, let him turn up in filthy clothes, stinking and not been fed for weeks?  I think Social Services might have been on my door if I had especially as I receive Carer’s Allowance for him. He was wearing gloves on a relative warm day and didn’t remove them until asked even though indoors.  He also didn’t remove his coat or bag.) It goes on.  I have a meltdown, my heart is pounding, I’m swinging from anger, sheer disbelief and overwhelming panic.  From this report I know that all monies will stop including my carers which I get because of the middle rate; that is just over £500 per month!  The £306 he gets and the stupidly ridiculous £62 per week that I get for caring for him even though if I put him into care it would cost thousands a week (it’s not even a minimum wage). 

I can’t realistically get a job; I’ve tried in the past and had to give it up.  No employer is going to be happy with me ringing in saying ‘I can’t come in my son isn’t coping today’, ‘I can’t come in, my son has a migraine and can’t see properly’.  He already stated in the assessment that he had more than half of the week not feeling 100% as she asked him how many ‘bad’ days he had.  Maybe a part time job is possible; a few hours a couple of days a week might just be possible, as long as it’s flexible.  Maybe a job from home.   Ok, breathe I tell myself.  Hmmmm, I haven’t been to work for more than 10 years, I’m in my early 50s, I have a twisted pelvis which means I can’t stand for very long or bend down that well or lift heavy things. Hmmmmm, the options aren’t looking particularly favourable. 

I look again at the report!  It’s ridiculous!  The justifications don’t match the questions, the whole thing is riddled with contradictions, things have been omitted, and one thing is a complete lie!  I burst into tears!!

A beautiful friend reads my status on Facebook and pops round with biscuits, cake and flowers.  Many more post supportive replies.  Some send links they have found helpful.  All I can say is thank you!!  I’m feeling numb by this point.

I have to wait until Monday to deal with it, but I can’t deal with it as no official decision has been made!  It’s blatantly obvious what the decision will be!  Have they contacted his GP?  No!  Have they contacted the hospital for his old notes?  No!  Will they look at the original form; see how different the answers are?  Will they look at the justifications on the report and see the contradictions, the non-relevance of some of them?  I highly doubt it.  What they will do is look at the top of each page where she has stated ‘a) can do….unaided’ even though there is an option ‘e) needs supervision and/or assistance to do……’

I’m not asking for a lot!  I’m not asking for thousands a week.  I’m not even asking for the higher rate!  I just want what we already have.  I want his needs recognised.  I want to be able to afford his specialist clothes that I can’t buy on the high street as they don’t sell elasticated trousers for his age.  I want to be able to afford medication as he can’t take tablets and has to have soluble or nasal spray versions which, I might add, have to be specially ordered as the chemist doesn’t stock them.  He can’t buy 19p paracetamol; he has to have soluble tablets at over £3 a pack.  He can’t have normal migraine meds as they are tablets, so it’s prescription meds (admittedly these are currently free, but they won’t always be).  I want him to have his private trampoline lessons as he can’t cope with group ones and can’t attend the home ed group that he so loved and was small enough for him to handle due to his studying.  I want him to be able to apply for his bus pass, his CEA card, his reduced fare train so he can take someone out with him and not end up ‘locked’ in his bedroom for the rest of his life.  And, damn it, I want to be able to afford my osteopath so I can damn well be pain free for a few weeks at a time. Oh and now I need to pay for prescriptions for Beta Blockers as my heart is pounding which I wouldn’t need if you’d done your damn job properly!

My son has an invisible disability.  I am invisible full stop.  I’m his carer and I don’t matter at all as far as the government is concerned.  Our health doesn’t matter.  We don’t even get free prescriptions.  We deal with a wide range of difficulties and get paid pittance, saving them thousands and on top of that we have this stupid, discriminatory, criminal, new system to have to deal with.  The forms, the assessments, the interviews, the paperwork finding, the tribunals, the waiting, the fear of losing life dependant money.  It isn’t just the disabled who are suffering with this new system; it’s the families and carers behind it.  Personal Independence my arse!  They want them locked away behind closed doors, hidden, pointed at if they do go out, blamed for the lack of money this country has, blamed for the drain on the NHS, ridiculed and ostracised.

Needless to say that I’m not giving up.  My son’s care and his independence are more important to me.  I’ll ask for a reconsideration (letter already done with help from KAT again who also laughed at some of the justifications and thought the relevance of some of them was stupidly ridiculous and also got angry at most of the rest), then when they turn me down (which they will), I’ll go to tribunal. This, of course, will mean months without money, lots of juggling, going without osteo to pay for his trampolining and not being able to afford prescriptions (how that’s going to work I have no idea).  Some of the bills will just have to wait.  All of it will mean more stress!  I need vodka.  Oh, wait, I can’t afford it.  Hrumph!

I’m currently also attending Cognitive Behaviour Therapy in an attempt to keep me calm so I don’t end up giving myself a heart attack.  When asked if I felt like harming myself, I replied “no, my son is too important”.  When asked if I was a danger to anyone else, I replied “only to the stupid assessor woman as I could quite easily strangle her if I saw her, but only after I’d punched her bloody lights out”.  “Ok, I think we need some therapy!” was their response.