Soph's School of the Mad: Week Thirteen

The fifth and final household birthday of the year took place on Saturday. Alex was FIVE! We went to see his grandparents, and he reacted completely normally to being sung to...


On Monday, I asked him to sound out this word:

"SUN-KUH! CUNT!"

No...not quite.

This week, as the end of term draws near, Jimmy has been asked to do a piece of creative writing so his teachers can assess his English ready for year seven. On Monday, we started with some planning, and also looked at Cinnabar moths. Our garden is OVERRUN with cinnabar caterpillars, but apparently they'll all eat each other soon so we won't have a garden of beautiful red moths. Boo.

Jack's topic this week is SPORT. Ostensibly, the cancelled Olympics, but he has requested to learn more about rugby as well. So...I guess we will.

On Tuesday, a relatively quiet morning. Jim worked on his MAGNUM OPUS, screeching with indignation because I disabled the autocorrect grammar tool on Word. He WILL learn what punctuation means.

Jack had to interview me about lockdown life. He asked some good questions: "Do you like Boris Johnson?" (NEWP), "How much beer or wine have you drunk?" (ONE BOTTLE, JUST ONE). We also took a lovely SELFIE:

God, I need to dye my hair. I haven't been this blonde since 2011.

We also got word on Alex and Jack's class allocations for next year, which sent me into a panicked spiral. HOW CAN HE GO INTO YEAR ONE WHEN HE DOESN'T KNOW WHAT A SENTENCE IS???

On Wednesday, Jim got up at the CRACK in order to finish his Great Work. Jack watched some videos about bullying and nouns. Alex did absolutely nothing, because (and I'll own it), I fucking forgot. Jim can go into this mode of being so absolutely overwhelming that you lose the will to live. Full Colin Robinson style. And on Wednesday, he did this with such FEROCITY that I was close to tears by midday.

I also bought some school uniform. Who knows if they'll ACTUALLY go back to school in September? Who knows anything anymore? What ARE plans? What IS the future? Based on this instability, I have refused to pay £6.20 for a single, tiny logo'd polo shirt, and bought supermarket crap. SUPERMARKET CRAP ALL ROUND. Jim gets to wear black polo shirts next year, because he's in year 7. I don't know who's more delighted: him for getting to wear black, or me because I don't have to do a white wash every week.

On Thursday, Jim edited his Great Work (reluctantly):

And illustrated My Shadow by Robert Louis Stevenson. Jimmy HATES this poem. It is for 'babies' apparently. No taste:

We also looked at how far two metres is.

About four times further than he initially believed.

Jack was asked to do a sport related newspaper frontpage, and WE WENT ALL OUT MOTHERFUCKER:

Look, it's been a really long week and sometimes I like to overachieve on my children's behalf.

Alex has spent the week in a post-birthday comedown. Yesterday, he VERY SLIGHTLY grazed his foot and went around for the rest of the day wrapped in a fleece. Then he fell asleep, so we couldn't get him to bed when the time came. Then he had a bath and WOULD NOT PUT HIS SLIGHTLY GRAZED FOOT IN THE WATER, so spent the bath on one leg, like a fucking flamingo. Sometimes, parenting autistic children is a voyage of discovery and genius. Mostly, it's trying to persuade your kid to do things like PUT BOTH FEET IN THE WATER.

C'est la vie.

FRIDAY, FRIDAY, GOTTA GET DOWN ON FRIDAY. Jim did some beautiful botanical drawing, as he's supposed to be learning about plant biology, but apparently 'already knows it all'. Steady on there, Carl Linnaeus:

Yes, that's the real poppy alongside.

He also has some FEELINGS on time travel.

At one point this morning, I turned to see Jack's book review descending into madness:

QUITE.

Anyway, one more week, and it's mostly a week of doing FUCK ALL, THANK GOD.

The EHCP! Part One: Applying

In the olden days of pre-2014, kids with Special Educational Needs and Disabilities (SEND for short) got Statements of Special Educational Needs. These were legally enforceable requirements to assist children through schooling. But the government got rid of most of these because they were legally enforceable and sucking up budget like nobody's business.

And now, instead, most SEND children get very little support at all. Schools are expected to fulfil children's support needs out of their budget. If they can't, they can apply for an Educational Health and Care Plan, which covers children until they are 25 and is supposed to be a more holistic representation of needs than statementing ever was. EHCPs have no force in law, but they do have to be agreed with the council and budgeted.
The government expect 2% of all school children to have needs that require an EHCP, which sounds suspiciously like a target to me, but I cannot be ARSED to do all the FOI requests to prove it.

To get your kid an EHCP, you first have to apply to the council. You can do the application yourself, or the school can do it. I have wanted to apply for an EHCP for Jim for two years, but this was the first year the school agreed they couldn't manage without one anymore. I would strongly advise getting the school on board before you apply, or getting them to lead the application. Your SENCo will know whether your child is likely to be awarded one and on what grounds. The application form is long and requires evidence. Lots of evidence. Evidence with clear links showing what has been done, what is in place and why this is not enough. For Jim, this ended up being seventy pages long. If you are even considering an EHCP in the future, check that your papertrail and the school's papertrail is in place. Get copies of every letter that pertains to your child. Be involved. Be honest.

Now, when the council get your request, they have four weeks to get it to panel. The panel comprises various experts in children's health and they decide whether or not your child gets an Education and Health Assessment (EHA). If your child does, then the assessment process begins. If not, you can reapply entirely or appeal. The council usually phone you with the results of the panel, and will advise you to get in touch with their parent-council advisor (also known as SENDIAS or SEND Partnership) for help.

Guess what happened when Jim's case went to panel?
They rejected it because the paperwork didn't demonstrate that his difficulties were due to his autism.
Yeah.
So, after taking advice from the school and the SEND partnership lady, we decided to go to mediation.

First, I had to apply for mediation with an independent charity. Although I did this immediately after receiving the letter from the council, it took me a week to get through to the charity because of being on holiday, and another week to set up the pre-mediation chat about whether to go for mediation or a tribunal. If I had decided to go to tribunal, I would have been issued with a certificate to say that mediation had been bypassed.

The mediation charity then set a deadline of when the mediation had to be done by, and got in touch with the council for a date.
I waited.
I waited a bit more.
Eleven days, in fact, I waited.
And then they sent me two dates, both after the mediation deadline date. Not only after the mediation deadline date, but in the first week of the summer holidays. Call me cynical, even paranoid, but it felt calculated to minimise the ability of school staff to attend.


I er...expressed my displeasure politely, agreed to the date and then waited.

While I waited, I spoke to the school, I spoke to the mediator in a premediation chat which formed the outline of my case and I spoke to the SEND partnership lady. And I stressed and I vexed and I worried. The problem with being Jim's sole advocate is that it is all on me. One wrong sentence, one form filled in on a bad day, and he gets nothing. The SENCo was confident that the council would overturn the decision but I was not.

Mediation day dawned. I had a very stressed week before, worrying. I mean, ultimately if you're unsuccessful, you just reapply. There's nothing stopping you applying every month until they give up if you want to. But it doesn't feel like that.

Mediation requires someone with decision making capabilities from the school and the council, the parent and the mediator. The parent can invite other people, including the child at the centre of the case. I invited the SENCo, Jim's TA, and the SEND partnership lady (who couldn't come). I decided not to bring Jim as the first day of the holidays is not the time to be dragging an autistic kid back into school. In addition, a man from the council who hadn't sat on the original panel attended, and the mediator. The mediation was held at the school, but you can request it to be held elsewhere if school is not neutral.

And so off we went. We started by signing forms - whatever is said in mediation cannot be used if the case goes to tribunal, no minutes are taken, and it's entirely confidential. We discussed Jim, and his issues, at great length, for two hours. I took my Giant Folder o'Jim and was able to evidence how long his issues have gone on for, and prove his behaviours have deteriorated. This is all important and useful. The decision was overturned.

An action plan was formed. In September, we will proceed as though the rejection and mediation had never happened and I will tell you all about the rest of the process when it's finally done.

If the mediation had not been successful, we could have proceeded to a court tribunal. As this is just for an assessment, the judgement would have been done on paper only - we would not have had to attend and all the paperwork from the initial application, the initial decision, and the mediation would have been used to make a final decision.

The other time you can request mediation in the EHCP process is if you do not agree with the provisions the council are prepared to make. The process is the same, but if you then go to tribunal, it is done face to face in court.

It's such a stress, but it's so necessary for a child like Jimmy with such a classic autism presentation. He's going into year four in September, puberty looms in the future, and it terrifies me. We began this process in April. It's now July and I feel like we're finally getting somewhere.

Racing for Life

Me, my siblings Eliza, Jess, Sooz and George and my sister-in-law Rosie are doing Race for Life 5k at Peterborough on Sunday in memory of our Mum.

My mum never saw an oncologist. She wouldn't go. She knew there was nothing they could do, so she wouldn't go. It made no difference. But it meant we were never offered genetic counselling or testing to find out if we carry the genes that make some women more susceptible to ovarian cancer. We don't even know for certain where Mum's primary cancer site was; the histology was not clear. Having endometriosis means I have an increased risk of ovarian cancer anyway, but my gynaecologist is reluctant to test me for the genetic fault on the NHS until someone else in my family gets it. As the oldest ovary-containing child of my mother, the test case is me.

My mum's type of cancer was unusual and incurable. Even if she had been diagnosed two years before, when we suspect it started, she would have been dead within five years. And she would have hated that. She would have hated the tests and the treatments, the desperation and the fear and the hope that led nowhere. I am glad she didn't know. As we come up to the anniversary of her diagnosis, I am glad that we didn't know.

But now we know.

We are not just racing for life. We are racing for hope. Hope for ourselves. Hope for others. Mum has not been the only cancer death close to us in the last year.

So we run (/walk) the Race for Life, and we hope that we live to be a hundred. We will walk around a field on a Sunday morning in the hope that we never have to go through this again. We will walk, we will sweat, we will giggle, we will pant because we are hopelessly unfit, and we will hope that if it happens to us, they will be able to help.

As of today, we have collectively raised £815 (+£167.50 gift aid) and we are so grateful. That's the cost of two MRI scans. The cost of two colposcopies to diagnose cervical cancer. Four prostate biopsies. Eight sessions of chemotherapy.

It's a lot. It's not a lot.

Please donate if you can, if not to us, then to someone who else who is racing or directly to Cancer Research.

August 2016 <3

"We Didn't Have Autism In My Day"

If you browse articles on autism, or follow any social media discussion on it, someone will show up and tell you that autism is new. This someone will usually be a 50+ bloke, who thinks it's all a load of old codswallop; poor parenting, too many chemicals in foods, vaccinations, labelling every kid who's a bit odd. Autism is new. Autism is a new invention that doesn't really exist, except in the Rain Man savant stereotype.

Autism isn't new. Autistic behaviours have been described in individuals going back at least 500 years. Just as epileptics were considered possessed by the devil, autistic people were considered soulless demons. Until relatively recently, disability was widely categorised as deaf, blind, crippled or imbecile/insane/feeble minded. Autistic people were broadly defined as mentally subnormal, where it obviously disabled them, and weird or criminally insane where it was less disabling. It was formally discovered and named almost simultaneously by Hans Asperger and Leo Kanner separately in 1938 (hence the confusion between Aspergers syndrome and Autism - they are the same disorder, described slightly differently by two people on different continents at the same time). Autism was initially thought to be the result of distant parenting, and was classified as "infant schizophrenia" until the 1980s. This idea of autism being the fault of parents, or a psychiatric disorder, still resonates in public discourse. But autism is not a psychiatric disorder, although it is usually grouped as a mental health condition - it is a pervasive developmental delay, pervasive because the person cannot 'grow out' of it. One significant change in the last twenty years has been a fine-tuning of diagnostic methods, which has enabled more subtle cases to be differentiated, diagnosed and helped. I know several adults who have discovered, sometimes to their great dismay, that they score highly on autistic diagnostic tests - the stereotype of the mute, asocial autistic person is not really accurate now. 

I read a comment from a man on twitter who said that there was nobody autistic at his school, and he was 37. I am five years younger than him and I went to a large primary school, and a large secondary school. There was at least four autistic people in my primary school yeargroup and many more in secondary school. Once you have an autistic person in your life, you begin to recognise the signs in others, but when you don't know the signs, you just think they're weird. The autistic people in this man's school would be the ones who were bullied, the ones nobody hung around with because they were strange or said the wrong things, the ones who never went to birthday parties, the ones who were regularly out of class, the ones who turned up for two terms and then disappeared. Jimmy's classmates know and broadly accept that he's different, but they don't necessarily know he's autistic - autism isn't a common word in an 8 year old's vocabulary. Autistic children are supported more obviously in mainstream schooling now, and there is far more help available if you qualify for it. 

But formerly, the only real option for autistic children was residential institutions. 

For those of us born in the last forty-ish years, institutions are a distant spectre. Huge Victorian asylums still stand in most towns, often converted into flats or hospitals, the residents broadly unaware of their history. But for our ancestors, institutions were a normal, if feared, part of life. If you had an obviously disabled child, you were encouraged to send it to an asylum as quickly as possible. Autism isn't usually apparent until toddlerhood at the earliest, but children were still sent away to residential hospitals. Parents were not encouraged to visit - a relative of mine was put into an asylum in early childhood because she had Downs syndrome, and lived forty miles from her parents. Her mother visited once a week until her death aged 13, in 1952. This is recent history. In the 1980s, the people who had lived in institutions for most of their lives began to be released as part of the Care in the Community Act. Many ended up in sheltered housing, having never been taught the skills to live independently. The issue with living in an institution is that you become institutionalised. Ironically, this rather suits autistic people, although it has the potential for horrific abuse. 

If Jimmy, my beloved eldest boy, had been born in 1949 instead of 2009, he would have been institutionalised by now. He would be living on the site of the old District hospital, in the vast Victorian workhouse and asylum complex that has been completely redeveloped. He would be considered dangerous and insane. 

Autism is not a new disease, and the reason older people claim they didn't have it in their day is because it was hidden away, concealed behind huge walls and gates, in stigmatic buildings, buried under sedation and restraint. There should be no pride in claiming autism wasn't around in the good old days - it shows how invisible and suppressed disability was, and how uncomfortable it makes some people that it's now 'mainstream'. 

Tax Credits

So, I signed the petition to repeal the 'rape clause' that forms part of the tax credit policy now. And today, I received a government response which amounted to "you should have complained about this eighteen months ago, tough shit". But one paragraph absolutely INCENSED me:

LET US PARSE THIS STATEMENT

"Families supporting themselves solely through work" are either not claiming the tax credits they are entitled to, or earning more than the income threshold (£25000 for one child, £35000 for two). Look at those thresholds: they are Quite High particularly as the average annual income is £27000. The vast majority of working class families qualify for tax credits. Remember the 'hardworking families" trope? That's them.

"do not see their incomes rise automatically when they have more children". No, but by earning more than the income thresholds for tax credits, they already have a considerable scope for a much higher income. Two children on £35000 a year is very different to two children on £45000 a year. There are always people who fall into the cracks of being just over the threshold, but frankly if you struggle on £36k p.a. with two children (as one who has been doing so on much less for years) learn to budget better. A great deal of necessary public sector jobs have low and locked in salaries - an MAU staff nurse in Peterborough can expect a starting salary of between £22 and £24k; a newly qualified teacher's income is capped at £22k in their first year - which automatically classifies them as both poor and according to this government, an idiot with no idea how to control their fertility unless you threaten them financially.

"The policy encourages families who receive benefits or tax credits to make the same financial decisions about the number of children they can afford to support as those families who support themselves solely through work"

WHERE TO FUCKING BEGIN? The fucking PATRONISING language - "we ENCOURAGE the IDIOT POOR PEOPLE to STOP BREEDING". The whole idea that Only Rich People are sensible enough and rich enough to have more than two children. The idea that people have children for tax credits - yes, the difficult pregnancy, birth and eternity of care I invested in my third child is definitely worth the £50 extra a week. And separating those who claim tax credits - 4.43 million households out of approximately 18 million in the UK at the last ONS count - from those who don't need to as though that is a fair and just way of dividing the nation's fertility choice. Previously, those who were on income support or JSA were the Undeserving Poor of the nation. Now, apparently, it's to be extended to anyone on a low income regardless of how much they work or what classification of job they have.

"while protecting the vulnerable by retaining extra support for families with disabled children." DON'T MAKE ME FUCKING LAUGH. I have a disabled child, and believe me, I had to TAKE THE DEPARTMENT OF WORK AND PENSIONS TO COURT AND THEN THREATEN TO DO IT AGAIN to get them to pay the money rightfully owed to my disabled child. They don't give a single solitary fuck about disabled children.

None of this stops me or anyone else from having thirty two children if I want to, but the fact is that most low income households have included tax credits as part of their forecast income when deciding to have more children, and now they will have to stop doing that. There is an uncomfortable element of eugenics inherent in this policy that reminds me of the Victorian era when it was widely believed that poverty and poor moral behaviour were genetically linked. Stop the poor people having loads of kids and maybe there won't be any more poor people to worry about! Never mind fixing the causes of poverty and social inequality, just financially sterilise them!

But for a whole host of women, this family cap is going to be a real fucking issue. You see, it is applied to children born after 7th April 2017 and to "any new claims". So, if your circumstances change in the near future, and you suddenly find yourself applying for tax credits for the first time, little Imogen the Third Child won't be counted. If your partner moves in, or out, that counts as a new claim, so you may be absolutely fine now as a single parent of four, but if your boyfriend moves in, you will suddenly find two of your children are apparently not eating all your food, requiring clothes, using energy etc.

My situation six years ago was nothing uncommon - boy meets girl, boy marries girl, boy impregnates girl, boy fucks off without a backward glance. I only had two children when I was dumped, but had it been another two years down the line, it could have been three. We could have easily afforded three children - indeed, we both now have three children - but I cannot stress enough how terrifying it was to suddenly lose 4/5s of my household income. My monthly wage didn't cover the mortgage, nevermind anything else. I relied on tax credits. Nobody should have children they cannot afford, but having children when you can afford them does not act as insurance against any financial or personal misfortune in the future. Women with more than two children in abusive relationships will have to think long and hard over whether they can afford to leave their partner.The Tories have also cut bereavement benefits, so if your husband or wife dies leaving you with more than two children, you are doubly fucked.

It will be women who suffer the most through this tax credit amendment. Two million lone parent households exist in the UK - that's just under half of all tax credit claims - and 91% of them are headed by women. Not only do women suffer the brunt of single parenting, they also have this fucking rape clause bullshit to overcome, where their third child only gets benefit if they are a product of rape. Never mind marital rape, never mind the ethics of being obliged to report your rape just to secure a little extra money, what sort of fucking government decides the only reason a poor woman might have more than two children is because she was raped?

It is a toxic, classist, eugenic and misogynist amendment and I loathe it and the party that instituted it with all my heart and soul.

Mother's Day

Mothering Sunday, to give it its proper title, marks the halfway point of Lent. The halfway point of the slog through the days of denial, of sacrifice, of fasting. The day where the end draws into sight, the joys of Easter just over the hill. The day when you should visit your home parish, your mother church, and historically, for many young men and women away in domestic or farming service, your mother.
Of course, fewer people observe Lent each year and the original point of Mothering Sunday is lost in a sea of greetings cards, floral bumf, and internet offers. Just this week, the internet has suggested I should buy my mum flowers, clothes, wine, gig tickets, and cookies.
I would buy her a book. A book of social history, or food, or better still, a mix of both. A book she wouldn't have seen in her semi-regular trips to the shop, or advertised in Sainsbury's magazine. I would buy her a book I know she would love, the sort that she would take to bed, packet of crisps in one hand, book in the other. I would buy her something like the history of the playground I saw in Jarrolds on her birthday, that made my heart hurt with longing that I would never get to give it to her.
I would buy her a card and I would write how grateful I am, and how much I love her, and hope somehow that words would be enough. I would take it round, and all her cards from all her seven children would be lined up in a row on the windowsill, and she'd be nagging my dad to go and see his mother before it got any later, and tea would be prepared, and she would be content.
That is what I would do if I still had a mother.

But I don't. And I don't like today. Today hurts.

When your mother dies, you don't merely grieve for the person. The wonderful, hilarious, intelligent woman I grew up with, who was my guardian, my educator, sculptor of my life and my personality, my friend. How I grieve for her. Her phone number in my 'last called' contacts falls further and further down the list and will never come back up. Her things are still where she left them at home, but they don't move a few inches to the left or right, the way things do when they are in use. I still expect to see her when I go in my dad's garden. I call it my dad's now - it was always "mum's house". Although we have inherited the look of her, her voice and her image are now only in recordings. The smell of her lingers in her clothes, but it will never be replenished.

In a million tiny pinpricks and sledgehammers of pain, I grieve for Jo, a woman who happened to be my mum, who was hundreds of things to hundreds of people.

But I grieve for the loss of my mother, for the loss of a mother's love, for the loss of a mother's guidance. For the loss of the person who was there first, who recognised my presence before I had a brain, who felt my first fledgling movements, and who knew me best. For the loss of the stability and foundation you only have through good parenting, through good grounding. Many people are not lucky enough to experience this type of attachment, but I did. We did.

I feel at sea: lost and abandoned and young and frightened. The fear on a child's face when they lose their mother in a shop momentarily, only magnified. When I was little, I was plagued by nightmares, and I would pad up to my parents' room and try and wake my mum up to tell her. She would rarely manage to wake up - poor woman was shattered - so I would sit by her head, and snuggle in to her until I felt safe enough to go silently back to bed. And that is what I long to do, to go and snuggle up to her for a bit until I feel safe enough to go back into the world.

Five months tomorrow. I feel like it has been five years and five minutes. But what really bothers me is that this is for always. That she won't come back. I can't have her back. Maybe if I wait a really long time, and be a really good girl, maybe we will be back together. Maybe.

When Mum was dying, she said she didn't mind dying herself, but she minded terribly about how it would affect us. She knew what it would do to us. I didn't mind Mum dying too much in the end. It felt very natural for her to die. It felt very unnatural to try and prolong her life. There comes a point when it doesn't feel wrong anymore, much as when you are pregnant, there comes a point where you really want it to all be over. So many parallels between entering and leaving the world.

But this grief, this all consuming and powerful grief: that's something to mind. That's something to tear you apart. Particularly on Mother's Day.

My Chemical Menopause

I was diagnosed with endometriosis last August, after an ultrasound scan showed that my ovary and bowel were sticking together within. That's an...unpleasant mental image, but bear with me, it gets worse. I had a diagnostic laparoscopy in November to confirm the diagnosis, and my surgeon found various patches of endometriosis around my left ovary. He BURNED THEM OFF. After two uncomfortable weeks of healing, I ovulated on the right, and all was well. The following month, I ovulated on my left side and it quickly became apparent that if anything, the surgery had made it worse. And I did DESPAIR.
I returned to see my gynae a couple of weeks after that and explained that it seemed not to have worked. I have wanted my ovaries removed since my mum died. The combination of her Unusual Pathology Ovarian Cancer and my endometriosis rendering ovulation unbearable seemed to suggest that just being shot of them would be helpful. A preventative measure, if you will. But my gynae was unconvinced that the pain I've been having was caused by endometriosis.

Let me tell you of endometriosis. A uterus is lined with endometrium. This is what nourishes an embryo until the placenta develops, so it builds up every month and should no embryo appear, out it comes as a period. Yes ladies, that is your body complaining vigorously that it BUILT THIS NURSERY AND NOW THERE'S NO DAMN BABY. With endometriosis, the endometrium has gone walkabout. It's still lining the uterus, but it also pops up in strange places. It can go anywhere, even your lungs, although generally around your pelvis, and it comes back even when it's been cut or burned away. As it swells each month and then bleeds, it can get in the way of fertility, cause immense pain and bizarre periods. It's like a harmless cancer that nobody quite fathoms. Until you get it, and every ovulation has you screaming in agony, vomiting and crapping yourself for a week. I told you it gets worse. I would rather have ten massive babies than ovulate.

And so, my gynae had a plan. A plan to prove whether my pain was caused by endometriosis or...gulp...birth injury. To my bowel. Eeeesh. And to prove this, he would give me the gift of menopause.
I was...a bit surprised. A bit terrified. A lot terrified, actually. You see, to give a woman of 31 the menopause requires injections. Four-weekly, implanted and irreversible injections. No deciding eight days in to say fuck it, this is shit, and stop.  The injections are a drug called goserelin, more commonly known as Zoladex, which is usually used to help treat prostate cancer in men and breast cancer in women. Zoladex flattens your oestrogen and testosterone production by overstimulating production, so your brain thinks it doesn't need to make those hormones anymore. Your ovaries stop. You are menopausal. Woop.
Now, the nice thing about Zoladex is that it does wear off, so I wasn't facing menopause forever, just for six months to see if it fixed my abdo pain. And if it did, then hurrah. If not, on to more clinics and tests. So, I decided to give it a go.

This is my diary of The First Month of Going Through The Menopause Really Really Quickly, Long Before Biology Dictated I Should: 

Two Weeks Before
I don't know why I'm so scared. I'm getting exactly what I wanted - no ovarian use and HRT - but in a nice reversible way, so if it doesn't work, I've still got my innards and haven't had to have more surgery. But...the menopause. That's a scary thing, right? I'm going to turn into a flame-breathing, sexless dragon. My boobs will shrink and I'll get fat(ter) and I'll break all my bones. I'm not bothered about hot flushes, because it's FUCKING FREEZING, so it'll be nice to be warm. But I am worried about being a flame-breathing sexless dragon. I have already told the children I might be a bit cross for a few months. And poor Alex has no idea his booby is about to vanish - another side effect of being an old woman, biologically speaking. Also, I am slightly irritated to learn that I could still get pregnant despite having dead ovaries. I suppose having no sex drive ever again will be an adequate contraception *wails into wine bucket*

A Week Before
I wish I could talk to Mum about this. Mum would have loathed the very idea of it. She would have shrieked about how she'd suffered all her life, and hormones could give you cancer (the irony!), and you shouldn't mess around with these things. That was Mum's philosophy on reproduction - let it sort itself out. Part of the reason her cancer wasn't diagnosed for so long was because she ignored her ovarian symptoms as 'normal'. That's part of the reason I want to try this out. I don't want to ignore the symptoms of (potential) cancer. I don't want to live half the rest of my fertile life in pain, and the other half waiting for pain. It's just not right.

Still A Week Before
I saw a lovely GP today, who told me that I only really have to use Zoladex for a few months and if it doesn't help the pain, I can stop. That's a relief. She prescribed everything for me, including tasty HRT and now it's just a matter of waiting for the appointment. I am nervous. I have booked it to go in on Valentine's Day because nothing says I love you like being neutered.

The Day Before
Last night, I dreamt my mum told me that getting Zoladex would tear my life apart and I was being a twat getting it. So, thanks, subconscious ghost of Mum. I'm so anxious. But resigned. I'm dreading speed-weaning Alex, but he's infinitely less bothered about breastfeeding than his brothers were. I will miss feeding him. I've been pregnant, breastfeeding, or trying to get pregnant for eight and a half years, and I will miss that part of my identity. I knew this day would come, of course, but not as a side effect of medication.

The Day Itself
I had it put in this morning. It's not a bothersome procedure. I was anticipating an ENORMOUS needle, but it's really not - just a scratch, then a slight pressure. It's in my stomach, just under my navel in my nice soft STRETCHMARKS. The implant is the size of a grain of rice, and it dissolves over time, so no need for painful removal. The nurse assured me I wouldn't start feeling anything for a while. She was wrong. Two and a half hours later, and the pain I associate most with the endometriosis set in, gnawing and clawing down my back and hip. It's now been four hours and I feel hot, dry-mouthed, sickly and like I'm about to have a massive period. Lord knows what tomorrow will bring.

Two Days On
Still got awful pain. It better bloody piss off soon. Otherwise, I've settled down a bit - hot flushes and headaches seem to alternate, but don't last long. I've still got the driest of mouths. I have no libido. Not even a little bit. I was expecting HAEMORRHAGIC FLOODING but I haven't bled either. I feel rather calm, really. I thought I would be furious. My breastmilk is more or less gone, much to Alex's sobbing distress last night, but he slept great last night regardless. Actually, so did I. I haven't slept well since I was pregnant with him, over two years ago now, and the last two nights I have slept like the Actual Dead. Who knew sleep could be influenced by oestrogen?

One Week Later
I have survived the first week. It's not helped my pain. I mean, the cyclical element has gone - my period would normally be due around now and I've had nothing related to that, but the general post-coital and random bursts of crippling pain are still there. I've had no bleeding at all, which I wasn't expecting. I haven't started HRT yet, because I'm a bit scared of the potential side effects, but I think I will soon. See, I feel alright, but I also feel entirely dead inside, and I feel like this is a bit...much to be honest. Chemical castration is all very well until it makes you feel like you're in a weird emotional void. And my skin is FUCKING AWFUL, so there's that. Hot flushes are intermittent and a bit like the build up to a fainting fit, which is EXCITING. I've had a lot of headaches though. I've decided to have two months of treatment total and, if there's no effect on the pain after that, then fuck it.

Eleven Days In
I started HRT yesterday in an effort to beat the migrainous headaches. It worked. It has also made me bleed. I grow weary of side effects. I know it's to be expected when you fuck with your reproductive system (as, my mother shakes her head from heaven) but I can't drink alcohol because I'll lose bone density, I still have to use contraception, and I'm still experiencing the same pain I went on the medication to try and fix. So. Yeah. And I'm spottier than I have ever been in my LIFE. I look LEPROUS.

Twenty Four Days Later
Right, so, the verdict after (almost) month one?
Obviously, it took a while to settle in. I started HRT, promptly BLED LIKE CARRIE AT PROM, and then felt awful because of the sudden anaemia. And then...normality. I feel...normal. I feel fucking GREAT. No pain, no nausea, no diarrhoea, no problems after eating dairy, no spots, no hot flushes. My mood is fine, I no longer feel dead inside. I feel a bit more aggressive, and I get cross occasionally, but I always HAVE been FURIOUS, so that's fine. The only real issue is headaches, but they're not too bad or too often. Also, dry skin, but that's nothing I can't manage. I cannot tell you the difference no pain has had on my life. I actually get stuff done. I don't spend four hours trying to wake up because I have such severe abdo and back pain. I haven't shit myself in weeks. I am going to continue treatment and hopefully it will continue to be alright. I still have minor symptoms. It still hurts after sex, but not in the prolonged and disabling way it did. This means I may have some birth injury as well as endometriosis. But taking my cycle away has been amazing thus far.

Of course, I can't stay on zoladex forever. Even in cancer patients, it's not licensed for long term use. I can stay on it for six months, which chimes in nicely with my next gynae appointment. HRT also has risks, namely of breast cancer and uterine cancer - the one I'm on is more typically used for women who have already had a hysterectomy. It would be ironic indeed if the medication I'm taking to stop my ovaries wrecking my life killed me with uterine cancer.
If it continues to work, the logical next step is an oopherectomy - having my ovaries out - which is usually done with a hysterectomy. And that scares the crap out of me, however little I want my reproductive organs. But that's a bridge to cross when I come to it.

It is Endometriosis Awareness Week. 10% of British women have endometriosis, and many of them will be fobbed off by their GP, told it's just 'women's problems', told that since they're not permanently anaemic, it's not a problem. Many of them will suffer unexplained infertility, and if they're among the group of women who have severe endometriosis with little pain, may not consider their own uterine tissue is choking their fallopian tubes. Some won't realise that their digestive and urinary issues might be caused by their uterus, particularly if they haven't had kids yet. My own GP only referred me to gynae because I insisted on it, otherwise I would still be struggling with two weeks of severe pain out of every four. It takes seven years, on average, to get diagnosed. I was incredibly lucky to be diagnosed within six months of first going to the GP, although I have been living with steadily worsening periods and pain since I was 15. I thought it was just normal. It's not, and you don't have to put up with it.

Life

Quality of life is difficult to define. In conversation, particularly when discussing degenerative illnesses like dementia, you often hear phrases like "I wouldn't want to live like that", sometimes to the point of being asked to be euthanised if they occur. Nobody wants to suffer. Suffering looks awful.
There are scales that are used to try and quantify what constitutes a life worth living, mainly as a way of channelling resources into palliative and end of life care. It should be noted that palliative care is any care that is intended to provide comfort rather than cure and can be offered alongside curative treatment, whereas end of life care means just what it says. Many people who are disabled or seriously ill may find that they have no quality of life according to these scales.

When discussing the theory of quality of life, what tends to be discussed is what makes people feel they are experiencing good quality lives, rather than focusing on the physical limitations they may have. These things tend to change throughout the life course, and are usually classified as hedonic (focused on immediate pleasure) and eudaimonic (focused on long term fufilment). I find my children immensely important to my quality of life in a way that my teenage sibling does not, indeed cannot. Fifteen years ago, my quality of life depended solely on my ability to be able to go out and get ratted. That is...slightly less the case now. Then you can take wider environmental concerns into accounts; things like living in a decent quality house, being able to find work, living in a low-crime area. It's difficult to have good quality of life living somewhere that makes you frightened. It's difficult to have a good quality of life if your main goal is wealth but you are poor. It's difficult to have a good quality of life is you are not able to do what you want through disability or illness.  Quality of life is a multifaceted idea that can't really be quantified. Though, sociology being what it is, they keep trying.

My mum's quality of life at the moment is objectively crap. She can't eat much. She's mainly confined to bed. She's on some hardcore pain relief. Using the various oncology ratings for quality of life, she scores very poorly. She has hospice nurses coming in to cast their knowing eye over her medication and help support my dad. She has district nurses coming too, for clinical care. It would be very easy to look at her life at the moment and sadly shake your head and sigh at how bad she must feel.

You'd be dead wrong.

She has my dad. My mum and dad have been married for almost 32 years. They weren't together long before they got married, and I daresay a few people shook their heads and muttered that it wouldn't last, but it has. They are still in love, still in tune, still in harmony.
They have seven kids. Seven! They have nearly ten grandchildren, and some of their children haven't even got started yet (we breed like Weasleys). And believe me, if our love could heal, she'd be fine.
She has her twin back, which has completed her.

She lies in the garden, come rain or shine, with a cigarette in one hand and a book in the other, plumped up on cushions and watching the birds (or sometimes, the cat EATING the birds). When it gets dark, Dad puts on the fairy lights and she lays in her grotto and she's happy. Tired, sometimes in pain, but happy.

Cancer has stripped away most of the stresses of life. Now she is living for now, with no eye on some future anxiety, with no grief for what she cannot have. She is not afraid. She has faith in God and believes that she will go on.

The day I found out Mum had cancer, my friend (unknowingly) shared this poem on twitter and as I have watched Mum come home from hospital and take root in the garden, it becomes more and more apt.

The Peace of Wild Things by Wendell Berry

When despair grows in me

and I wake in the night at the least sound

in fear of what my life and my children's lives may be,

I go and lie down where the wood drake

rests in his beauty on the water, and the great heron feeds,

I come into the peace of wild things

who do not take their lives with forethought

of grief. I come into the presence of still water.

And I feel above me the day-blind stars

waiting for their light. For a time

I rest in the grace of the world, and am free.

When A Child Is Born

I've written up all my own birth stories, but this is the story of the first birth I watched.

My little sister Sooz was 38 weeks pregnant with her third baby when Mum first got ill, and it became very quickly obvious that Mum was not going to be able to be her birth partner this time. So I volunteered, since I'm unphased by blood and gore and Have Had Babies Before.

Naturally, being a Sooz-baby, this one took her sweet time and things eventually got going eleven days after her due date. Sooz decided to go and be in labour round Mum's house, so Mum could be included, while I waited for news. After receiving some text messages that made me do this:

I got a message saying she was ready to go to hospital. So I loitered in the road, awaiting collection, and off we went to the maternity unit.

The maternity unit clearly don't believe women who ring in saying they're in labour, and so we spent some time sitting in the waiting room. Well, we sat: Sooz marched up and down, stopping every couple of minutes for a contraction, and then carried on marching. This is what is known as an active labour, and it is excellent for getting labour established. Sooz, like me, finds contractions much easier to deal with standing or leaning into something, so we had lots of stops for her to cuddle the reception desk or the bookcase.
After about half an hour, we were called to triage and Sooz continued to march until they put her on the monitor. It's hard to know quite what to do with someone in labour. When she was marching, I rubbed her back through contractions, but when she was lying down there wasn't a lot I could do, so I just pathetically stroked her hair until she told me to bloody stop it. She started to need to poo, but since she only felt this when she had a contraction, it was fairly obvious to me that what she really needed was to have a baby. She was not convinced. We sent her beloved partner out because he looked like he was going to faint, and then she suddenly went intro transition. Transition, if you're not aware, is the part of labour when the cervix stops opening and the uterus begins to push, and for some reason it makes women go a bit mental - pleading to go home or trying to leave is very common. Sooz just demanded to have the monitor off because she wanted to march!
So, the midwife had a feel and discovered that Sooz was indeed ready to push and her waters were on the cusp of breaking. She ran off to find a room while Sooz started shrieking about how elated and euphoric she felt because she was going to have a baby. She waddled across the hall to her delivery room, got on the bed, her front waters went splat and began to push before the midwife had even got the computers loaded up. She didn't make a sound aside from a tiny bit of groaning when the baby crowned, and then behold! A baby girl on a tide of water!

We arrived at hospital at around 8:45pm, went to triage at 9:15pm, went to the delivery room at 9:40pm and Evie Jo was born at 9:54pm.

I cut the cord (in one cut, which impressed the midwife) and helped Sooz get her on the boob and then came the difficult delivery of the placenta. She had ragged membranes around the placenta, which isn't unusual in deliveries where the waters break as the baby's born, but they didn't spot it until after she haemorrhaged. Sooz does not appreciate being stitched after delivery, and although she only needed one stitch for a first degree tear, FREAKED OUT at the very IDEA of it. After having the baby without so much as a murmur and no pain relief, she was huffing entonox like a teenager at their first rave. And, betwixt freaking out and crying with pain, she rode the wave of high and SQUEALED about being BOLD. It was fucking hilarious. I cannot tell you how much I regret not having entonox for any of my deliveries.

The doctor sat at the business end, fishing out all of the clots and membranes (squeamish to watch, unbearable to experience), while Sooz alternated shrieks and giggles. Her partner sat with the baby looking bemused and I looked on with interest. They started her on a syntocinon infusion and then finally left her alone to feed the hungry gurl!
I left around 11:30pm, having done my duty and aware that the parents needed to enjoy their new baby alone.

Not before snuggles though

So, how did it compare to my own labours? After all, you would think that being sisters, we would be similar in how labour and delivery worked, and we both have three babies.

Well, first as far as pain management goes, we are similar. Neither of us have had pain relief in labour, preferring to use movement and positioning (I dance and squat, she marches) to deal with the pain. I have been stitched without pain relief each time, although now I kinda regret that, whereas Sooz always has entonox because she hates it. 

Sooz tends to go into labour shortly after having a show, whereas I have never had a normal show, and what I have had has been anything up to ten days before the baby. My labours are much shorter and sharper. Sooz tends to have early labour in the morning, active labour by teatime, baby at bedtime. With each baby, her waters have only properly gone at the end. For me, labour has started with my waters breaking and once the contractions have started, progressed extremely quickly. Now, whether I would have laboured more like Sooz if my waters hadn't broken first each time, I don't know. I'm not going to do it again to find out!

She is much, MUCH quieter than me. It's characteristic for women to be vocal in the final stages of labour: it's one of the main signs midwives look for. Sooz is almost silent, aside from tiny murmurs. I tend to scream and swear and yodel my way through.
Transition is different too. Sooz had a very definite break between transition and beginning to push. I need to push before and then during transition, so I don't get any break. I do experience the feeling of calm once transition has passed, but not for any length of time and certainly no euphoria. Boo.
The biggest difference is probably in terms of the third stage. The WORST stage for me, because my uterus goes into atony and needs rubbing up (such a vile thing) to get the placenta out even with the active management, then I haemorrhage and it's just a bloody mess. Sooz has had two simple third stages, although this one was more complicated because of the retained membrane and untreated anaemia. She did extremely well.

Watching her go through the predictable stages of labour then birth really reminded me of my own experiences. I remembered more viscerally the pain and stinging and waves of contractions and the relief of getting the head out watching her, than I ever could just thinking about it at home. I felt it with her. It's a hell of a thing to watch someone push a baby out, but I really enjoyed it. When everything in our family is tinged with sadness, this was a moment of total joy.

Sooz was an absolute hero; brave and bold and noble Sooz, and Evie is a beautiful little piglet.

If

If we acknowledged that every time we saw someone, it could be the last.
If we put that much meaning and significance into every encounter, every quick chat, every hug.
If we recognised the ubiquity and unpredictability of death.
We would all go mad.

It's not sustainable. It's something we all unconsciously reject day in day out, because it is too painful. Imagine. There would be no such thing as a quick phone call, no such thing as 'just popping in', no such thing as a nod and a smile in Tesco. Every "see you later" would become racked with meaning and significance. We would all go mad.

My mum could have easily died three and a half weeks ago. In fact, protocol dictated that is what should have happened, but thankfully Mum's surgeon decided to turn a blind eye to the shadows on the xray and save her anyway. We consider this 'extra life' that she's been granted a huge boon, and we are so grateful to the team at Scarborough Hospital for doing us that enormous service. But it is not going to last long.

The greatest thing that has come out of it is that Mum can see how much she is loved. How deeply, how extensively she is loved. How many lives she has touched, how many people adore her and admire her. Too often we leave it too late to let people know how much we love them, tearfully gathering at the graveside with regrets, wondering years later why we never took the time when we had the time. You always think you will have more time.

Mum has the privilege of experiencing her posthumous tributes while she is still here to enjoy them, and she loves it. She has stopped batting away compliments.
Meanwhile, we have the privilege of being able to concentrate all our love and care on her as she has always given it to us.

This week, we have reunited with family we haven't seen in decades, and my mum is so overwhelmingly happy. It's a strange paradox, that this awful time makes us all so happy. Sometimes, I feel as though I'm full of wet sand and I can't breathe because I'm so afraid and so upset. Mostly, I am emotional yet joyful that Mum is still here, still baffling the doctors, still joking and giving out recipes, and making enormous lasagne, still full of love, still here. Still here.

I told my older children that Granny isn't going to get better yesterday, and that was difficult. Difficult enough, but when you have to take all the calming euphemism out of it for an autistic child, more difficult. And they told me that as long as we remember her, she will never leave us. I expect they heard it on a TV show, but they're right. We continue to make memories, (which is a phrase I FUCKING HATE under normal circumstances), to take photos, to be together while we can.

I don't really have a point today except to encourage you to tell your family you love them while you can. Maybe you already do tell them. Maybe you think they already know. Maybe you don't see them as often as you'd like. Maybe you don't have the words. Just tell them. Regret is so much more painful than embarrassment.

And please donate to Macmillan if you are able and want to do something help.

Mum

This blog has been written with the full consent of both my parents. My mum would love to read any (nice) comments or messages you would like to leave, either on here or twitter/facebook.

Food is inextricably linked to both memory and comfort. What's the best thing you've ever eaten? This isn't a question where the answer is likely to be "the tasting menu at The Fat Duck" or "lunch at Le Manoir aux Quat'Saisons" (though Lord knows I wish it was). This is likely to be a question where the answer is so personal it's almost secretive. An answer that requires all the senses and memory. An answer that won't necessarily tally up to anyone else's idea of a good meal.
Christmas dinner when I was about 7 and still believed in Santa, high on the magic of the thing, eating in the dining room by candlelight as it slowly got dark, with fairy lights and people everywhere. Every Christmas dinner for that matter, especially the one when my kids gave me a round of applause afterwards, even though most of it came from Messrs Marks and Spencer.
Soft beetroot sandwiches in the old van - not like a people carrier, but a Transit with seats bolted in the back, the only thing we'd all fit in - on the way to the seaside, where more beetroot sandwiches and squash awaited.
Chips in the back of that same van. Chips that I didn't like because, for some reason, I had a mortal hatred of them until I was about 14. I used to eat monstrosities like pineapple fritters to avoid the horror of chips. On holiday, we would sing all the way back to the caravan at the tops of our lungs, full of chips and warm coke from a sandy plastic cup.
Then later, much later, a massive cheese toastie, a kitkat and a pint of tea, after a night of illicit drinking down the Wellhead.

My mum's roast beef dinner, with all the trimmings and homemade cheese sauce. A meal to revive the soul. A meal I won't get to eat many more times.

My mummy is going to die.

We all know our parents will die. We have that factual knowledge, because that is what happens. Death is the trade off for life. Everyone dies, hopefully in a generational order. It is the right way of things. We reach adulthood under the care of our parents, and then the caring reverses (eventually) and we look after our parents as they die.
But really, we all think our parents are immortal. We think we will have them with us until we are old ourselves, and being old ourselves is such a distant concept that it translates to near-immortality. We've heard the statistics. We see the Macmillan cancer adverts on TV. We know so-and-so's daughter died of cancer when she was only 15, 25, or 40. But until it happens to you, you do not think your parents will die until YOU are ready for it to happen.

My mum found out she had cancer in an unusual, and quite dramatic way, after a few weeks of illness explained away by other causes. She says she's had a good idea about it for a while, but was afraid to get it confirmed. Afraid of the tests, and the internal prodding, and waiting for the results, and the grave consultations. So, instead, she waited until all hell broke loose within and found out off her merry head on morphine in an ICU, far from home. Her official diagnosis is metastatic ovarian cancer. She prefers to simply say she's dying. We don't know how long she has left yet.
But, we will have no false hope here. No platitudes. No denial. There will be no mad dashes to America for some bizarre, unproven treatment.

What we will do is look after her. My mum has had a lot of babies. Our ages range from 37 to 15. She has an army of carers, not least my wonderful dad. The joy of a big family is that when this happens, it's not one or two of you bleakly staring at each other over a deathbed; it's a platoon of you giggling over memories, being able to take over and stop each other getting too exhausted. It's a web of support that you don't need to go and look for, with different skills and styles of care. Mum doesn't want to be in hospital, surrounded by strangers. She wants to be at home with us, so she will be.

But back to food. My mum has been cooking professionally for years, mainly in care homes but also for weddings, parties, christenings and wakes. If you've been to a family 'do, you've probably eaten Mum's sandwiches. If you haven't, then you are Missing Out. Her illness has recently meant she's stopped enjoying food, because she hasn't been able to eat. She's even stopped thinking about food.
I can't think of my mum without thinking about food. This is a woman who's most common phrase is "GET OUT OF MY TRIANGLE", meaning sink/oven/surface. A woman who once, halfway through a family quiz, fell asleep until the question "How do you make a roux?" came up.  She opened her eyes, recited the ingredients, and went straight back to sleep. She taught me how to roast a chicken, how to poach eggs properly, and how to manage a kitchen. She has been bulk catering regularly since about 1990. She gave me my own obsession with cooking books - I used to read her hideous 80s cooking magazine collection as a small - and then plundered it to read herself.

I can't eat now. It's not exactly grief because she's not dead, and we shouldn't waste our time wailing about her being dead until she actually is. It's a grief for the future that would have been, if this disease hadn't happened. It's a selfish grief for the imminent  loss of such a wealth of advice (particularly with parenting) and love and care. It's fear. It's a little disbelief because how? She's 54. I thought I might get another twenty years, at least. I can't imagine myself without her.

Let me tell you something about my mummy. She is as strong as an ox. She has given birth to eight babies (my tiny brother Thomas didn't make it) and never had pain relief - one of us weighed nearly 11lb. She has had this cancer for an unknown amount of time, long enough for it to really take hold, and carried on working full time and caring for her home and children. She has coped with her parents dying, with having all these children, with all our dramas - god there's been some dramas -with faith and humour. She has had an acute life-threatening illness and dangerous operation that would have killed less hardy people and sailed through it. She laid in her hospital bed, still very physically unwell, bitching merrily about everything, expecting my dad to be psychic, totally her normal self (aside from immediately after morphine when she started asking about Uboats and hearing tingling). She has taken this awful news on the chin, with black jokes and sorrow and love. She says she's not strong. She says she's not brave. She says she's a coward or she would have gone and got it sorted out before. She is wrong. My mum is being strong and brave and an example to us all.

Mum has requested that, if you feel inclined to do something and can afford to, that you please donate to Macmillan Cancer Support through this link. They are truly being wonderful at the moment.

Blame the Mother

Last August, I was just about to have a bath when I heard a bang and a scream and my husband yell for help. My middle son, in his effort to somehow FLY into bed, had overshot, bashed his head on his chest of drawers and cut his forehead open. A combination of extremely blonde hair and gushing head wound meant it looked far worse than it was, but after a trip to A+E and some glue, he was fine. No harm done. Accidents happen.

A few years before this, I was making a cup of tea, turned to put something in the sink and my eldest (who would have been around 20 months) pulled a cup of just poured boiling water directly onto his head. I stripped him, put him in the sink under cold water (poor child was baffled, but this is the best thing to do with a scald if ice isn't immediately available) and then went to A+E. He suffered very very minor burns, but otherwise, no harm done. Accidents happen.

Many years ago, when I was five, I fell through a window under the watchful eye of my father and was millimetres from death. The awful injury sustained still gives me a lot of problems. But accidents happen. I'm alive and well, that's the important thing.

In none of these cases was any fault attributed to a parent. They were accepted as accidents, because everyone knows accidents happen with little kids. Little kids are unpredictable. They are not rational. They don't fathom danger, or apply it to themselves. Sometimes, the accident is fucking awful and someone dies. Recently, that someone was a gorilla.

First off, much loved family dogs have been known to murder children so I don't know why people are surprised a gorilla might be hostile to an invader. Gorillas have some genetic similarities to us, and a lot of people have said he was protecting the toddler. How would you react if a large, unknown mammal suddenly fell into your house? How about it a great crowd of similar mammals bellowed at you about it? I'm guessing you might feel intimidated, and afraid, and probably defend yourself in the way you do when a spider runs across your bare feet in the night. Stop anthropomorphising a gorilla. Gorillas are dangerous. There's a reason they aren't given free rein in a zoo.

Second, it is a mystery to me why the enclosure wasn't properly blocked off. I dislike zoos at the best of times, and I would much rather have a huge electrified fence protecting me from the big animals than have them in a moated hole. In fact, I would much rather have the big animals living in their natural environment, not locked up in some faux-forest-clearing in Cincinnati, but that's just me. The safety of the enclosure seems to be in doubt.

So, a four year old got into the enclosure. Four year olds are not wise beings who can gauge danger. Four year olds are very much of the age when they see a gorilla, want a gorilla, and go to see the gorilla. Only a few months ago, I had to rescue my idiot then-four year old from a huge pile of masonry in Ludlow Castle where he had taken up residence. Four year olds do not think about the consequences of their actions. The four year old's life was endangered by the gorilla. The zoo did the only thing they could reasonably do in the circumstances and killed the gorilla. Poor Harambe. The little boy survived.

And now his mother is being absolutely ripped to fucking shreds by social media. People have called for child protection to investigate her for neglect. People want her head, mainly because of the death of the gorilla I think, rather than any real concern for the child.
Just the mother, you'll note. As is so common in these sort of cases, the father of the child is just a blameless simpleton who couldn't possibly be expected to share in the management and safety of his children. This is an extraordinarily common narrative in any story castigating a feckless mother, and it is both misogynistic and generally damaging to the state of fatherhood. Surely we have progressed from the 1950s, where Father has a flat cap, a pint of ale, and the stub of a rollie and doesn't know his children's names, let alone where they are at any given moment?! I wonder what the narrative would be had the child been in the sole company of his father, perhaps on a weekend-daddy-day? I'm sure the mother would still be blamed somehow, probably with a headline like "HARAMBE BOY'S MOTHER DRUNK WHEN HE GOT INTO THE ENCLOSURE".

So, the mother is at fault, because honestly, who expects a zoo to be safe in this day and age? Surely they just let the animals roam about freely and you have to dodge out of the way of marauding lions and whatnot!? My main concerns when taking my boys to the zoo are losing them, traffic if it unexpectedly turns out to be covered in roads (Whipsnade, I am looking at you), and Jim having a meltdown. The idea that they might be able to actually get into an enclosure wouldn't occur to me. Does this make me stupid, that I assume a zoo has taken sufficient safety measures to stop my kids being mauled? This isn't like the case where the man deliberately climbed in with some lions in an elaborate suicide.. That child should not have been able to get into the enclosure. I think it is reasonable to expect a zoo to be safe, even if the safety measures are invisible. Compare this with the Smiler accident at Alton Towers last year. Nobody was screaming that the people on the ride should have known better than to go on such a clearly dangerous ride, or tried to blame their parents for allowing them to go to a theme park unaccompanied. There are expectations of safety from public attractions.

But still, definitely the mother's fault. She should have been watching him! Well, yes, and I know this is a foreign concept to the childless, but you do OCCASIONALLY have to look at OTHER THINGS when you have children. Like, where you are going, checking other people in the vicinity to make sure nobody's being abducted, other people if they start a conversation, your phone if you get a call, your camera to 'make memories' (urgggh that phrase), or even your other children. I can think of literally thousands of reasons to stop looking at your child for ten seconds, and as any parent knows, a child can cause absolute chaos in ten seconds.
Now, imagine watching your child being mauled by a gorilla. Most parents really do love their children, even if they never post a meme to tell you how much. Social media animal behaviour experts seem much more willing to attribute a gorilla with mammalian emotions of love and protection than the child's own mother. I can't even imagine what the hell went through her mind (or the boy's dad's mind, or his siblings for that matter) seeing her son so in danger. That is punishment enough.

Yes. it's a tragedy that Harambe had to die so a boy could live. Yes, there are lessons to be learnt. But it's not the mother's fault, unless she pitched the kid into the enclosure herself. Sometimes, there is nobody to blame, and that's what really gets on everyone's tits. 

Education. Not employment.

When I was a child, my dad was obliged to work for most of August, which meant our family holidays generally took place in May or June. We were pulled out of school en masse (there's seven of us), and returned, slightly sunburnt, a week later. The school probably complained a bit to my parents, but gave us consent to go and we didn't suffer for it. Quite the opposite, in fact. My childhood holidays are some of my happiest and most vivid memories, moreso against the backdrop of my primary school experiences.

Now, of course, this is forbidden BY LAW and also THE COUNCIL. If you take your children out of school in term time, you and their other parent can be expected to be fined £60 each per child. In my family's case, that would have meant a £840 fine, doubling to £1680 if my parents hadn't paid within three weeks. Most people don't have seven children, so for an average family with two children in school, that's a £240 fine.

Compare that to the cost of a holiday in term time vs a holiday in August. Here's a handy price comparison for a week's holiday, for a family of four. The first price is the second week of June. The second price is the second week of August. 

CENTREPARCS ELVEDEN:  £1138 vs £1878

STATIC CARAVAN IN YARMOUTH:  £173 vs £599

BUTLINS SKEGNESS: £382 vs £1234

PRIVATE COTTAGE IN ST IVES, CORNWALL: £464 vs £769

CARAVAN IN SOUTH OF FRANCE: £190 vs £1081

MAJORCA WITH THOMAS COOK INC FLIGHTS: £1506 vs £3142

LEGOLAND RESORT (two nights, midweek) : £889 vs £1121

DISNEYWORLD FLORIDA INC FLIGHTS: £2550 vs £4114 

(Prices correct on 18th May 2016, identical accommodation compared)

Suddenly, that £240 fine seems a fair price to pay for an affordable holiday. Or a tax on parenthood. Whichever.

The government have become obsessed with attendance in schools. My eldest son got sent home from school yesterday and isn't allowed to go back in until Friday because he had a small episode of diarrhoea and is now absolutely fine (and driving me mad). But every week, the newsletter tells us to send our kids to school even when they're ill, because apparently teachers will send them home if they're not well. It shouldn't be a teachers' responsibility to either judge the severity of a child's illness or to have to shepherd a load of unwell children through the day. More to the point, it should be a parent's prerogative to decide when their child is too poorly for school.

Primary schools do not employ children, yet the rules of employment seem to apply more and more to kids. Too much sickness: BAD. Too much holiday: BAD. They can't SACK the children for persistent absence, but they can persecute the parents, fine the parents, make the parents harass doctors, and take the parents to court. 

The jargon of the board room is even filtering down to the taught content. I flicked through the sample KS2 English SATs paper earlier. What is the relative clause of a sentence? What is a prepositional phrase? I don't know and I studied English Language at A Level. Do 11 year olds need to know what an antonym is? What's wrong with saying opposite? What's the active voice? What's a determiner? 

I was stunned last year when my six year old told me about split digraphs. He meant 'magic E' as taught by Wordy and Look and Read. I suppose Magic E is too rave culture for the modern Department of Education. 

Jargon is most commonly used as a signifier of special knowledge, to exclude others and exalt the group who understand it above others. A good example is medical jargon, frequently used to talk about patients without them understanding it, as well as to give status to the medical profession. After all, a fracture of the 5th metatarsal sounds a lot more interesting than a broken little toe. Jargon is frequently used in office conversation to try and improve the status of relentless administrative meetings. "Let's touch base, yeah, before the close of play" sounds like something interesting, something...productive, unlike "we need a meeting before you go home". Jargon is endemic in academia, which is perhaps part of the problem.

English is now taught to little kids in linguistic jargon. Now, there's some stuff like synonyms that don't really have a simpler form. Verbs and nouns are just that. But the present perfect tense? When parents - well educated parents with relevant qualifications - don't have a fucking clue what children are being taught anymore, then perhaps it's time to have a rethink and stop treating children like they're in higher education, or work, already.  

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.