30 Apr 2016

Where History Is Annoying

I love history. It is a weekly regret that I didn't do a history degree, although I have done a history module. I'm seriously considering doing either an MA or a postgrad certificate in history next year, depending on funding/grades/confidence. In the mean time, I am voraciously reading primary sources and history books. I think the census, for example, is one of the most beautiful resources our country has, particularly the 1881. God I love the 1881. This makes me strange, allegedly. I also have a penchant for royal history and biography, chiefly because the sources are such good quality. 
But there are a few things that really HACK ME OFF. I'm a total amateur, and may be entirely wrong, but bear with me here.

There were extra letters in the Old English alphabet. One of them was thorn, which was shaped like this: Þ. Thorn was pronounced 'th', like in thick and they and THE. In Middle English, which was pronounced very similarly to modern English, despite looking like gibberish, thorn was retained in some dialects, and on into early modern English. However, it began to be written more like a y than a Þ. It looked like this (apologies for teeny tiny picture)

Doesn't that look just like a y? WELL IT BLOODY ISN'T and the amount of times PROPER HISTORIANS translate it as ye instead of the makes my BLOOD BOIL.
So think on, Ye Olde Tea Shoppe.

2. Life Expectancy Is Unrelated to Biological Ageing
In 1900, the average life expectancy of a man was 50. In the middle ages, it was around 35. For women, it was a little less. Some people have taken this information and conflated it to mean that a 35 year old man in 1500 was absolutely WITHERED with age. This is bollocks. A natural lifespan, without accident, severe illness or birth defect, has always been around 65-70. Modern medicine, better midwifery, and improved living conditions means our present life expectancy is around 81.
The biggest factor in the difference between life expectancy and natural lifespan is infant mortality. When you have one in five babies dying in infancy, that drags the life expectancy right down. When you add to that the very high childbirth mortality (one in ten) for women, and then the lack of safe working conditions, monotonous and vitamin-strapped diets, no antibiotics, frequent battles, poor heating and inadequate medical care after injury, it's not surprising a lot of people died in their prime. But plenty of them did not. Edward III lived to be 64 in 1377. His mother lived to 62. These were impressive ages for the time, but mainly because of the vast amount of things that could kill you then. 

3. Fertility and Childbirth Were As Complex Then As Now
I recently read a biography of Isabella of France that stated that she had no more children because she was too old at 34. NO. WRONG. The same book (by Alison Weird) makes the assumption that Isabella and her husband, the much derided Edward II, had infrequent sex because Isabella only had four known children. Fertility, as many women know, is a capricious beast. In my opinion, Isabella was not a terrifically fertile woman who is known to have suffered a slow recovery from the birth of her last child. It is far more likely that she suffered some sort of birth injury that compromised her fertility than she went through the menopause at 28. Fertility is linked to living circumstances - menarche happens earlier in well-nourished women, and menopause a little later - and the menopause certainly didn't happen nearly two decades earlier in the middle ages. Isabella's daughter in law Phillippa had her last child in her 40s, as did Eleanor of Aquitane (who lived to the exceedingly ripe age of 81, in the twelfth century), Eleanor of Castile, and Elizabeth Woodville. Except where women were widowed, infertile, or died young, this seems to be the rule rather than exception. 

No, you've got PMT. 

28 Apr 2016

The Best Sandwich

It's been a bit heavy round here of late, so let us lighten the tone. I think sandwiches are the greatest food on Earth. Whether it's a simple snack, or a meal in itself, a good sandwich is a beautiful thing. A bad sandwich, conversely, is an oral horror.

So, here is how to make my best sandwich. It may not be your best sandwich, but it's good. It's so damn good. I had to share it. 

Steak. Some form of salad leaf - I use baby leaf salad bags. Mayonnaise. Dijon mustard. Ketchup. Garlic. Ciabatta (or other bread roll).

So, steak. That covers a variety of meat. I usually get rump, because it's cheap and comes in relatively small piece, but you might be rich and therefore can buy sirloin or rib eye or...fillet. Pure greed ordains the amount of steak you will use. Don't get a really fatty piece - get a piece where you're left with enough steak once you've trimmed the fat off. Fat on steak is simply NOT NICE when cooked quickly. 
Take your steak out of the packaging, trim it of big fat lumps, put it on a chopping board and SMACK IT with a rolling pin until it's of reasonable thinness. You are going to eat this between bread slices; you need to be able to get it in your mouth. 
Once your steak is thin. put your pan on the heat and let it get good and hot with a bit of oil in it. Some people oil the steak rather than the pan, but I am not one of those people. Crush a clove of garlic.
While the pan gets hot, plop a couple of tablespoons of mayonnaise into a bowl, add a big teaspoon or two of mustard and mix it well. Adjust the ratio of mayo to mustard according to taste. If you don't like mustard, use French's American mustard, which doesn't really taste like mustard but does add the requisite tang without burning your mouth out. 
Put the steak in the nicely hot pan, with the crushed garlic. I like my steak bloody as hell, so I don't cook it for long, but because the steak has been pounded thin, it doesn't take long anyway. Turn your steak regularly by the way: shun these people who reckon you should leave it on one side for a month to 'seal in' the flavour. They are lying, that is not how science works. I flip my steak every minute or so and it's perfect. PERFECT. Watch the garlic doesn't burn - flick it about a bit with the steak. 
Slice your bread in half while the steak cooks. 
When you think your steak is done, take it out, cut into it and have a look. If it's underdone, put it back in. If it's overdone, you must lump it. 
Take your slices of bread and wipe the cut sides around the pan. Garlicky steaky oil is a much better lubricant than butter. Now you are ready for assembly.
Spread mustard-mayo on the bottom piece of bread. Add salad. Add steak. Add ketchup. Add more mustard-mayo. Add top piece of bread. Squish it down a bit. The best sandwiches are always squished.

And then you can feast. AND HOW!

Swap the steak for sliced flat mushrooms. Fry them in loads of butter and garlic until they're thoroughly cooked, then use as THOUGH THEY WERE STEAK PIECES in the sandwich. This may actually be better than the steak version. It's probably mildly healthier.

20 Apr 2016

Being bullied

TW: Sexual assault, violence, self harm.

When I was five, I looked like this.

Then, when I was eleven, I looked like this:

Now, I look like this (on a good day):

But in my head, I will always look like this:

You see, I was born with a malformed top jaw. Not something you notice much when your milk teeth come through, but my god, when I got my adult teeth, it was about as noticeable as you could get. I developed trichotillomania when I was 11 and scalped myself. So, going into secondary school I had the teeth of a deformed chipmunk and the hairline of Friar Tuck.
I suppose, all things considered, bullying was inevitable.

But this is the thing. I was bullied from starting school.

I don't know why. I was a fairly innocuous child. I was probably fucking annoying and a know it all because some things never change, but for some reason, a few girls in the year above me took against me and took up arms. I remember, aged five, being held, face-first, against a wall. I remember them telling me to come to the toilet with them in lunch, to be told a secret, and instead called names until I cried. 
Then my adult teeth came and lo, the bullying went up accordingly. I was already an easy target, probably because I didn't have many friends and didn't socialise outside school. But it's one thing to be targeted by a couple of bored girls, and something else to be targeted by everyone. They even stole my fucking lunch. It reached something of a nadir in year six, when I was first sexually assaulted on school grounds, and later had the shit beaten out of me by four boys, on the local park for the crime of being there. It followed me everywhere. At least when I was on holiday or at home, I could get my older brother to come and look threateningly at people. At school, I was mostly on my own. 
No wonder I ripped out half my hair.

And then. Secondary school. Oh the endless fucking DELIGHT of starting school looking like a morlock and having six foot tall, sixteen year old boys think nothing of calling me names across the playground, because all year seven girls need that on their plate. I developed a cruel and crude sense of humour to deal with it, and tried to give it back as good as I got. It occasionally got me into trouble, and being called names is not the worst thing that's ever happened. Of course, it felt like it at the time. Nobody ever had a crush on me, for example, because of the awful shame associated with being attracted to a morlock. I used to get in fights outside school, because I didn't want them to call me names anymore. There was a small crowd of 'cool' boys, who really took umbrage at my existence, particularly in shared lessons. One of them decided the best way to make his mates laugh was to put a piece of the cheesewire we used for cutting up modelling foam in DT around my neck. I couldn't breathe. I nearly knifed him in the face with a handy craftknife. I believe they left me alone after that.

I developed a few bad habits to deal with the constant angsty pain of existence. A bullied teenager is a most unhappy sight. I drank. I drank a lot. I drank often. I used drugs, now and then, mainly to deal with crippling social anxiety (sorry mum). And I beat myself bloody, because I hated myself so much I wanted to be anything else. 

Now. I am 31 years old. I have grown up. I have three gorgeous children. Despite being so hideously ugly, it has been constantly remarked on since I was five, I have got through two husbands. I know! The greed! Three years ago, I went back to my old secondary school for a reunion. I didn't want to go. I got so drunk the night before, I ripped a hole in my stomach lining. Then I got drunk in the car park before we went in. I couldn't bear the thought of being back in the torture chamber. I drank more as we went around to deal with it, disguised as orange juice. Then we went to the pub. It was that sort of a weekend.
And do you know something? There were quite a few of my former tormentors there, and none of them said a thing. They smiled. They nodded. They moved on. They remembered me, because I'm fairly memorable, but they don't remember every word they said to me fifteen years ago. That would be silly. They have moved on.

I have not.

I will never be wholly comfortable with the way I look because I was told every day for twelve years that I was hideous, either directly, or through a look, or a snigger, or a whispered comment. I will never really believe that I am worth a second glance. I hope I will stop hating myself for the way I look, but then worry that my children will be bullied in turn when people tell me how much they look like me. I doubt I will ever be cured of the anxiety I now recognise has been part of my life since I was pre-pubescent. Anxiety that people will shout at me, that they will follow me down the street threatening me. Anxiety about walking through a group of teenagers, because even at 31, they make me feel fourteen and a target again. I rarely go back to the town I grew up in, partly because it's a shithole, but mostly because it's full of memories. That's the alley I ran down when those boys were chasing me. That's the street those men threatened me on.That's the part of the park I was beaten up on. That's where I used to sit on my own with the dog because I had no friends. That's my loneliness. That's my pain. That's my lack of safety. That's my teenage years in a shitty nutshell. 

And therein lies the problem with bullying. Kids will be kids. Kids will shout names at others. Kids will take against what is different. Kids will hurt. Kids will fight.  Kids don't mean it. 
They didn't mean it.

19 Apr 2016

How To Appeal A DLA Decision In Eight Easy Steps

One of the things that has struck me most over the last four months of fighting this appeal is how bloody archaic and unnecessarily difficult it is. I suspect this is deliberate to discourage people from appealing. So here's how to appeal, and what happens when you do.

1. Ask for a reconsideration

If your child is turned down for DLA, they don't tell you why. You have to ring up and ask. I rang the number on the letter, spoke to a helpline operator, and a lady called me back that afternoon. You have to give reasons as to why you want a reconsideration,  but they won't tell you why they turned your claim down until they call you back. So it's easy to get flustered. Your reasons are used in issuing the reconsideration and are used in your appeal, so make sure you fully explain to them why you want one.

2. Wait for the reconsideration decision to come through

For us, this stage took five days. If you're lucky, they will reinstate your DLA immediately. If you are not lucky, you will get a letter that tells you how to appeal, and, separately, a Mandatory Reconsideration Notice. You get two copies of this notice, and you must send one in with your appeal.

3. Do your appeal paperwork

THIS IS THE CORRECT LINK TO ACCESS APPEAL PAPERWORK (valid April 2016). The link in the letter was wrong, and it took me ages to find the right paperwork. You need form SSCS1, which is the first listed. You then download it with a left click:
Courtesy of justice.gov.uk
The form is reasonably simple to fill in. You are your child's representative, so you don't need to fill out Section 4 unless someone else is helping you with the appeal and willing to deal with the paperwork for you (e.g. a social worker). You have a small box to fill out with your reasons for appeal. You can write as much as you like: just attach it on separate sheets, with your child's name and date of birth at the top.
My advice is to write the reasons you are appealing in as much detail as you can. If you can get people to write supporting statements (e.g the consultant, the teachers and SEN staff from school, psychologists involved in care) then attach those as well. Take the reasons the DLA have given you for turning your claim down and refute them. We were turned down for mobility and care allowance, so I contested both separately.
You also need to decide if you want to go to the tribunal. Since Jimmy is autistic, there is nothing additional to be gleaned from the courts seeing him, so I decided not to go. If your child's disability is obvious, or you are more eloquent in person than in writing, it may well be better for you to attend. It is entirely up to you.

All this paperwork must be submitted within one calendar month of receiving the Mandatory Reconsideration Notice. You need to send:
 - The form, signed and completed
- Any additional supporting documents
- A copy of the Mandatory Reconsideration Notice

Send it by recorded delivery.

4. Wait

First, you will get a letter from the DWP acknowledging your appeal request and telling you which tribunal court your case will be heard at. It all gets a bit legal at this point. You should receive a letter from the tribunal court asking you to confirm what kind of hearing you have requested.

Within a month of your appeal being acknowledged, you will receive a truly terrifying wodge of numbered paperwork from the DWP. In it will be a copy of your original DLA application, all the supporting documentation you have sent, a copy of your reconsideration request, and the DWP's arguments against your appeal.

This huge wodge of paperwork is your case, as it will be presented to the tribunal. Keep it: you need to take it with you if you go to court, and it is also useful for reference.

5. Wait Some More

About two weeks later, you should get more information from the Courts and Tribunals Service. If the DWP are being particularly shit, they will demand an oral hearing and you will get a letter inviting you to attend. This completely threw me - I didn't realise they COULD do that, but they did in our case.
I did not attend. I did send a final statement, however, which refuted each of the DWP's reasons for not awarding DLA, systematically and concisely. You can do this, and also send through any additional evidence you might have gathered in the interim, as long as it reaches them at least a week before the court date. Send it recorded delivery though.
I also spoke to the Court twice and found them to be absolutely lovely and helpful. If you have any worries, ring them! If you do go to court, there's lots of information in the letter about how to claim your costs back.

6. Court Day

I don't know what happens if you attend, because I have other things to do smack bang in the middle of the Easter holidays than blush and fluster through a hearing, but rest assured, I sat worrying all day. The hearing consists of you (if you go), a DWP representative (if they turn up), a disability expert, a clinical expert and the judge. They decide the outcome there and then. The court write up the decision and send it out to you by first class post. Our tribunal was Tuesday, we had the decision on Friday.

7. The Decision

The decision is on one side of A4 paper, which came as a bit of a surprise after all the bumpf we got before. It tells you what they decided, and any extra notes. Ours was super short - it told us that the paperwork and case was in order and safe to be heard, it told us what they had decided to award our son, and that was about it. There is a lot of detail in the extra notes about what happens if either side dispute the ruling, how to appeal the appeal, and that the tribunal court cannot enforce the decision.

8. Next Steps

We won. The following Monday, DWP rang up and asked a few questions to confirm the rebate of funds and said they would be with us within ten days. I also phoned Tax Credits to get that part reinstated - they can decide whether to backdate your payment four weeks or for the full amount it was stopped, but if they're kind, they'll give you the full amount.

4 Apr 2016

I Fought The DWP And I Won

DLA is a non-means-tested benefit awarded to children with disability based on their physical care needs. There are two parts - care element, which is awarded according to high (24 hour), medium (all-day) and lower (intermittent) care needs, and mobility, which is awarded according to either high (cannot mobilise) or low (cannot safely mobilise) mobility needs. These needs are compared to those of the normal age cohort - so you wouldn't expect a two year old to be able to wash their own hair, but you would expect a twelve year old to be able to. You would expect a six year old to be able to go to sleep on their own and sleep through, but not a six month old.
Last year, Jimmy was awarded high level care and low level mobility for two years duration. This was because, in addition to his daily care needs, he was waking up repeatedly in the night and needing supervision to be safe and get back to sleep, and because he can't safely go anywhere on his own because of his sensory and communication issues. 
In October, I was sent a new form in order to apply for a renewal before his old award ran out in February. I filled the form out, I asked the school to write me a letter to send in with it to pre-empt them asking the school for more information, I attached all the hospital letters we have (albeit, no new ones since his last application since he was waiting for his autism assessment) and I sent it off.

Filling out a DLA form for your disabled child is fucking hard work. The only way to get through life as an autism parent (indeed for any parent of a disabled child) is to focus on the positives. So that's what I do. Yay, Jim has finally started sleeping in his own bed, he's sort of making friends, he's not been in trouble at school for a week, he can READ!, he doesn't hurt himself so much. 
But when you write the DLA form, you have to focus on what they CANNOT do. He can't safely walk down the road on his own. He needs 24 hour supervision to stop him hurting himself or (more likely) others. He isn't generally aware of other people. He won't get dressed for school without help. He won't brush his teeth without help because he hates the tingle of toothpaste. If he wakes up in the night, we ALL wake up in the night.
The DLA form is not read by a medical professional, who might understand the condition you're describing. Instead, it's read by an administrator who has a handbook of useful phrases to help categorise your application. Now, I used to be a clinical administrator and you learn a hell of a lot about care needs and medical conditions when you read about them nonstop, so I don't think that's inherently a bad idea. Well, I didn't until I sent the DLA form off.

Within five days of them receiving it (compared to the four months it took the initial claim to be sorted), they had written to me not just not renewing his DLA but stopping it completely, effective immediately, three months before it should have been. 
I phoned them, confused. After all, his needs have changed a little since originally applying, but not to the point where he's entirely able and normal. Autism doesn't get cured overnight. They said someone would phone me back within two days. 

Astonishingly, they phoned back on the same day and I spoke to a pleasant woman who told me the reason his claim had been rejected was because he hadn't been seen by a doctor in almost two years, ergo there's clearly nothing wrong with him. (The exact wording was "No hospital evidence to support intermittent behavioural problems" - INTERMITTENT?) I don't think they even read the form, since I had written on the form that he was awaiting assessment, his appointment date (received the day before I sent it in) and included a recent letter from the neurodevelopment team stating he was on the waiting list for a full assessment. 
Pleasant Woman was very pleasant about it. I explained that he needs full adult supervision, self harms, hurts other people, and has no road sense (all important parts of the needing-care element of DLA) and that his autism assessment appointment was THE NEXT DAY. She said that I would need to submit the written verdict of the autism assessment as soon as we received it and they would reinstate and backdate his claim based on that. 

I have real issues with this. You see, I get that care needs can be transitory, and that a long absence of hospital information could mean someone is trying to get substantial money they don't need. I understand that all non-means-tested benefits are open to being abused, because bitches love money and they're less financially scrutinised that means-tested ones. 
But DLA is not supposed to be awarded based on a diagnosis: it is supposed to be based on real time care needs (as the DWP told me, patronisingly, in their own appeal paperwork).
The enormous gap in time between referral and diagnosis for autism patients is a known issue, and as CAMHS and the school keep arguing amongst themselves, diagnosis doesn't make any fucking difference to the daily life of the child. They were autistic before, they are autistic after. A diagnosis is not a doorway to treatment and cure, it's just a label that is useful for getting more help, and many children with well-managed autism don't see clinicians for years at a time.
We use Jimmy's DLA money to fund educational resources to keep him up to date during school holidays and to broaden and personalise his learning. We use it for holidays themselves; for days out, and for the various sensory toys and tools we use to keep him happy and calm. It also takes the financial strain off us, which when you're fairly poor anyway is the difference between autism being part of life, and autism being too much to cope with.
I had to phone them to find out why his claim had been stopped - they don't tell you in the letter - because I knew based on the information I'd given them, it was a bad decision. Imagine how many parents DON'T QUESTION IT because they don't think there's any point, or they're scared to question it and be scrutinised, or they think it's set in stone. When I wrote about this on social media, friends who work in social work and medical fields said it now seems normal for claims to be rejected, and require appeal for reinstatement. I'm not sure whether this is a bid to cut the benefits bill or if that's just cynicism. I did make a FOI request to try and find out how many DLA claims were declined, and how many of those were appealed successful, but apparently this is information the DWP simply do not have to hand. My arse.

After a week, I got another letter. My request for reconsideration had been denied. They detailed why, and to be honest, it was a load of bollocks. He had his mobility stopped because his care needs outside were the same as any six year old. When was the last time you saw a six year old run off because of a horn, stop dead, walk into people, lie facedown on the floor because of a dog, in the street?
He had his care allowance stopped because
1. He hadn't been to the doctors in two years
2. A letter from school said he was a pleasant child who struggled with transitions

Now, as mentioned, he hadn't been to the doctors in two years because they told me there was nothing they could do until he had an autism assessment. He needs occupational therapy to cope with noises? Nope, needs the ADOS. He's biting himself because he's so anxious? Nope, ADOS first. I literally don't know what to do anymore, help me? Wait for ADOS. Three separate times I phoned the hospital asking for help, over the course of a year, and three separate times they told me to wait. So, what would be the point in going to the doctors?
Then the letter from school. In the week I received the decision on reconsideration, I had been called in by the teacher because Jimmy had kicked a chair into a teacher and he'd ripped a display off the wall. Schools always want to believe the best in children, and have been open about not really believing Jimmy has autism. When they say he struggles with transitions, they mean he has a loud meltdown everytime it's time to change activity or move to another area. He's better at school than home, because of the routine, but he's still unsafe and difficult.

So, how to appeal this decision? The letter said I would need to go to justice.go.uk/tribunal and download a form to send off for appeal. So I went to the link, and found nothing useful. I had to search the government's site for ages before finding the correct form, and downloading it.
I filled out the appeal form as concisely as possible, and asked the school to write another letter describing his more negative behaviour. I had a diagnosis by then, so I could include the psychologist report as extra information. This, I should add, was the day before the end of Christmas term and I had one calendar month to get the appeal submitted. Stress central.

I got the appeal submitted. I then waited. After a month, I received a huge sheaf of paperwork from the DLA. And dear reader, in my vexation, I didn't read it properly. I read the first two paragraphs of the covering letter (which said it explained the decision), then read the first few pages of the paperwork (declining his DLA) and assumed the tribunal had ruled against us. I cried. I sobbed. I worried. I stressed. I drank. Six hours later, I read the letter properly and found that actually, it was just the Dept of Work and Pensions' response to the appeal, and the case prepared to send to court. Erm. Oops.

So. Let me preface their reasons with a note about the ADOS assessment. It is one 45 minute, constantly guided play session, used to grade behaviour on the autistic spectrum. It cannot be used as a diagnostic tool in it's own right, hence the FOUR HOUR ADI-R that followed a week later.  Jimmy scored highly on his ADOS in terms of communication and reciprocation, but lower on the restrictive and repetitive stereotypies element that is characteristic of autism. Jimmy has a strong history of stereotypies, repetition and restrictive behaviour WHEN HE IS ANXIOUS: when he's happy, he doesn't demonstrate them so much. Aside from to talk constantly about food, to stuff his face all the time, and to chew himself up in lieu of food. And anxiety tends to be triggered by doing anything unpredictable, like go outside, go to someone's house, go out for the day, etc.

With that in mind, and being aware that I repeatedly referred to these elements in all the letters I sent them, here are the DWP's official reasons for not awarding DLA:

1. Autism does not mean an automatic right to DLA. 
Well, I never said it did. I did say that he's autistic and his lack of hospital appointments in the last two years doesn't mean he's magically cured, but that's not the same as demanding DLA because he's been diagnosed.

2. Jim stops in the middle of the road and has no road sense and that's totally fine because his ADOS demonstrates he has no 'temporary paralysis of will' (their words)
No, I have no idea how they made that leap either.

3. Jim needs guidance when out and about and, because he didn't show any evidence of stereotypies in his ADOS, that's fine.
No, seriously DWP, how do you make this leap? What do stereotypies have to do with the constant unpredictability of going out?

4. Jimmy doesn't need enough help during the day to qualify for the care rates because he didn't demonstrate any self harming behaviour in his ADOS appointment. Although he needs some help at school, he is also a nice child and thus does not need substantially more help than a normal child of his age. 
However, his ADI refers constantly to his patterns of self harm and injuring other people. But apparently, that doesn't count because HE WAS FINE IN HIS ADOS! The amended letter from the school also states that he now has a one to one TA all day, but that's TOTALLY NORMAL AND THE SAME AS OTHER CHILDREN. As is requiring sensory circuit therapy every day. Totally standard.

5. Jimmy is not at risk of sufficient danger during the day/night to require constant adult supervision because his ADOS doesn't demonstrate any self harming or repetitive behaviours. 
No really. That's it. That's their whole reason.

And so...we waited.

After a couple of weeks, I received a letter from the Tribunal service telling me what date our case would be heard and that if I didn't attend, it would be decided without me. I was a bit surprised, since by this point I had told the court twice that I wanted the case decided on the paper evidence, so I emailed them for confirmation. They rang me a few hours later and explained the DWP had requested an oral hearing, although they don't often turn up, and I didn't have to go but I could submit more evidence in writing as long as I got it in a week before the court date.

I can only assume the DWP do this to bully people. Honestly, it is BAD ENOUGH doing this as the able parent of a disabled child; I cannot imagine how shit it must be if you are claiming for yourself. I felt like I was on trial for the whole of this case, like I had done something terrible rather than try and get my son's disability money reinstated.
So I wrote a long essay based around the points listed above, but more academic, better referenced, and with less sarcasm, to submit as my final statement on this case. And the waiting recommenced. A lot of lovely people offered to help me go to court, and encouraged me to go, but I couldn't. By this point, it had built up in my head to a terrible demon that I would rather not face. After all, if I didn't go, I couldn't fuck it up and be blamed for any bad outcome.

When the tribunal date came round, I just kept myself busy, constantly aware of the time, and then came down with a terrible virus that stopped me thinking about anything for three days. Which just so happened to be the same amount of time it took the court's decision to be sent to us. I got my husband to read it; I couldn't bear to look.

We won.

Jimmy's lower rate mobility has been reinstated from the date it was stopped, for the next three years. His care rate has been reinstated at the highest level up until February (when it was due for review anyway) and now reduced to medium level for the next three years. It means we have to potentially go through all this again in another three years, but for now, we are done.

The relief is beyond compare. The vindication. The feeling of pure, righteous joy. This was a few days back now, and I am still elated. The court judgement is rather plain, but does say that the DWP didn't attend the hearing it demanded, and the case could have been (and was) determined by the paperwork alone. I wonder why the DWP decided to waste taxpayers money in such a way? Is it really just an intimidation technique? If it is, it's genuinely a worrying tactic. Nobody claims disability benefits for a laugh and a doss, not in the current political climate of LOATHING THE DISABLED, so to target and bully vulnerable children , at the taxpayers expense, seems extraordinarily underhand.

But we won. WE WON! I don't need to write any more 3000 word essays on what Jimmy cannot do and why. I don't need to rail at friends, family and passers-by about how fucking crap the DWP are at legal reasoning. I don't need to sit during every meltdown thinking "well, if the DWP could see you, maybe they'd believe me". I don't have Jimmy screaming he will KILL the government for taking his special money, after I explained that's why he couldn't have a tablet for his birthday. I don't need to doubt my own ability to reason, or whether I'm qualified to actually DO this because I'm a sociologist by trade, not a bloody lawyer. No financial decisions need to be held off, or just abandoned, because of waiting. We can live again. For four months, I've been holding my breath, flinching at every brown A5 envelope that's come through the door with (Appointee) after my name in the address line, worrying, being furious, feeling like a fraud, feeling fucking hard done by, feeling aggrieved on behalf of Jim and every other family that's been through this.

It's done. Until next time.