A new start

I’m doing new things in 2017; whether it’s due to turning 40 and feeling more mortal (need to start living more!), or simply because the time is right, I don’t know. But I’m making changes to me, to my surroundings, to my perceptions.
I decided last night (so technically on the first of the month) that I’m going to try and keep my blog updated regularly. Ideally daily, but life happens, so no pressure. And, so it’s not just me moaning on, I’m going to use journal prompts I found on Pinterest.

Here’s February’s…I’m starting with the 1st (ooh, rebel), mostly because the prompt for the 2nd will require Serious Thoughts and it’s not yet 6am… 

My favourite place.

I grew up in Ilford, Essex. We lived two roads away from my grandparents in a house built near the turn of the 20th century (we still had an Anderson shelter from WW2 in the back garden, but were never allowed in it: it did, however make a wonderful shelf to enable my sister and I to lean over and talk to the kids over the back fence and trade toys with them…The story of the Great Barbie Fiasco is for another time…)

Five minutes’ walk from our house was the imaginatively titled South Park (ermagerd, they killed Kenny!), a square-sided, late-Victorian public park with two playgrounds, a bandstand, a cricket pavilion, a HUGE field, a long, narrow duckpond, and (I remember vaguely from the verrrrrrry early 80’s) two little kiosk-shops selling pop, ice-cream and crisps.

South Park also had the most wonderful trees.

According to my mother, as a tiny baby being pushed round the park in the pram, I’d always wake up if the shadow from one particular lime tree crossed my face. I remember as a five- or six-year-old collecting the big, faintly sticky leaves to try and stick them together and make clothes like Adam and Eve had on on the big bible Aunty Iris had.

There was also The Spaceship: a fir or pine, I think, with a strong, straight trunk and low, curved branches. The way the foliage grew meant that inside the tree were big spaces where we could sit astride the branches or climb without being poked and scratched at by the branches. I’m not sure if it got dubbed The Spaceship due to the faintly spaceship-shape way trees of that type grow, or because spaceships was the game we always played there…

Past The Spaceship and just over a little rise, down the path past the bandstand (a forbidden territory due to the steps having caved in) and on the left was My Tree. Capitals totally justified, IMO. I think My Tree was a chestnut, although I haven’t sat under it for half my lifetime, and I may remember wrongly…But, regardless of species, this tree was special. 

I was an unhappy teenager, being weird, poor, not particularly pretty and naturally inclined to lonerishness. What I now know as depression was – in retrospect – present in me from quite a young age, and when life got too much, I’d grab a book, or a sketch pad, or my Walkman, and head for My Tree. I’d sit on the grass, back against the trunk, and get lost with Garion and Polgara or Simon and Binabik for an afternoon, or draw little cartoons and strange, ugly creatures, or listen to decidedly uncool music. And My Tree would help me (this is because trees are magic. There’s no other word for it). I’d sit down angry and afraid and lonely, and get back up contented and more certain of myself. 

I miss My Tree.

South Park also had gigantic spider plants (probably actually huge ornamental grasses or something) big enough to hide in and jump out at people; a massive, man-made hill with an oak at the top; holes in the perimeter fence which meant I didn’t have to walk to the gates…And memories along every path.

By the grotty tennis ‘courts’ was the best place for conkering with Grandad.

I had my first ever panic attack aged four, stood on the top step of the slide.

Walking the dog with Mum past the back of the cricket pavilion, and her in fits of giggles because no matter how I tried, I couldn’t say ‘feather’.

The long, straight path from the South Park Drive gate to the South Park Crescent gate where I learned to skate on those rattly, adjustable skates which laced over my shoes, and were not glittery disco roller boots, no matter how much I pretended.

Long, complicated games of pirates/astronauts/dinosaurs/princesses with Kristen and Amelia on the long hump of earth by The Spaceship (there was a bench in the middle where mum would sit and read, but could still see and hear us, so we were allowed free range).

Walking Dill, and later Sam, round the pond while they barked at the uppity Canada Geese; accidentally walking through a cricket match because I was reading; getting my chin cut open because I walked out of the bushes behind the swings without paying attention, and got clipped by someone swinging (three stitches, and I’ve still got a scar); my Nan, pockets full of little bags and a pair of secateurs, unashamedly taking clippings as we walked; falling through the ice on the pond one winter; never being allowed a ‘popeye’ from the ice cream van because they were too dear; and so on and so on…

It’s all changed now, obviously. Time and health and safety have worked their cruel magic, and when I looked it up on Google, it wasn’t the place I remember. But it’ll be that place for another kid in this generation, and in generations to come.
Which is kinda cool, isn’t it?

A Follow Up Blog

Bet you’re all agog now, right? No? Just nod and smile – I’ll go away faster that way.

Anyway.

I blogged on Monday about the lignocaine/lidocaine infusion procedure I was going for, and how I’d only read negative things about it and I was worried, etc., etc…

Well. Here’s the contrasting 5* TripAdvisor review:

OMG. Seriously, OMG.

I arrived at the hospital, got gowned up (wasn’t expecting that, or I’d have worn the ‘accidentally-flashing-my-bum’ Posh Undies), and was shown to a bed in the anaesthesia/recovery part of the hospital. Nurse Kim introduced herself and said she’d be sat with me for the whole thing. Sister Kim (two Kims for the price of one!) managed to put the venflon in one the second go, but that’s because my veins like to collapse, not because she wasn’t good at it. During this Nurse Kim had to squeeze my arm to keep my veins kind of inflated, which made me giggle.

I had ECG stickies attached and the first set of obs done – I was normal, so there’s a first! After which point Doctor Subramani arrived and did the bit where the lignocaine goes into an automatic dispensing gidget and then into me via the venflon.

And then two hours of chatting to Nurse Kim about all sorts, and occasionally complaining I had a headache or felt a bit dizzy. When that happened she’d take my blood pressure and get the infusion slowed…apparently, if given too fast, lignocaine can cause death, but I stayed away from the light for the entire procedure. Go, me!

(At one point my blood pressure dropped to 90/70 which was exciting, and made me giggly, but it bounced back quickly.)

I had to sit in recovery for 9omin to make sure I wasn’t going to accidentally die (I didn’t. Turns out I’m very good at not dying), then I was allowed home. For the next three hours I was hyperactive as a three year old on skittles, then I conked out. I think I woke up before the following morning, but TBH I can’t remember. Twitter will probably show if I did, and I’m sorry for anything I said/did/spent.

Enough of the travelogue! 

Ok, no need to shout.

Has it worked?!?

I’m getting to that bit; hush up a minute.

So. Tuesday was a bit of a washout. I felt nauseous, had a horrible headache, and all my aches and pains were worse. Bummer, right?

Yesterday (Wednesday), I had this bonkers rush of energy. I still needed my trusty stick to walk, but I went miles.  

What’s more, I negotiated both Boyspawns to a *new* optician, sorted out dinner, did bedtimes, and didn’t got to bed early OR nap during the day. I know, right?!? I went to sleep after midnight and woke easily just before six. I made gluten-free muffins without a proper recipe (and without a panic attack at my lack of recipe), packed lunches, did hugs, walked to school, came home, had shower, and even as I type this I am waiting for a bus to go to pain management physiotherapy – somewhere I’ve not been before, and I haven’t a clue whatll happen when I get there, but I’m going and I’m not panicking or ducking out.

Ok, I still have the usual pain: my back is as useless as ever, and my wrists, shoulders, pelvis and ankles disapprove of my actually doing stuff…but the constant, low-grade background pain isn’t there. 

My mood is massively better. Probably because I’m not on the hamster wheel of pain/tiredness/frustration/repeat, but I’ll take it for whatever reason. I feel optimistic and slightly more in control. Huzzah!

For some inexplicable reason, not only has the non-stop itching gone away, but the odd lizard skin has too. Weird or what?

I feel like I have my ‘me’ back: the optimistic, silly, cuddly, enthusiastic me who’s been MIA for longer than I realised.

I don’t know how long this will last. They’re giving me a follow-up call in three months, so let’s see. But whether this is three months or three days, it’s such a joy to feel like this again.

Oscar Moment:

I’d like to thank my family, for putting up with the worst and still loving me;

Kris especially for the FibroGoddessing;

My tweeps, who keep me straight and are there 24/7;

Andrea. Being my bestie is a hard job, and she is magnificent;

And Dr.S, Sister Kim, Sister Helen, Nurse Kim and Mo of the George Eliot Chronic Pain Unit. You guys have made me feel like I’m a person again. Thank you.

Jet Girl. I want this as a tattoo. ‘Adjust’ is my new motto 🙂

Woo/eeeeek!/argh, etc…

Morning, my little apple dumplings.
In 90minutes I’ll be at the day unit at the local hospital waiting patiently (ha, I’m funny…no?) to have a lignocaine infusion.

This should, theoretically, do something to reset my pain receptors, and if it’s successful I may be able to come off the gabapentin (woo!) and do stuff like laundry or shopping or dancing while cooking without all of my spoons getting used up.

However, two things worry me:

First that I am noticeably crap at pain relief. I ended up going to hospital to have my teeth out because after twelve injections in my jaw, I could still feel the dentist working, so I needed the industrial-grade local anaesthetic. Also, stuff like pethidine (makes me actually howl like a dog) and morphine (earnest discussion with Hubby about smiling tigers on the ceiling) make me a bit, well, bonkers(-er than usual). What will whole-body lignocaine do? (Tune in next week, sports fans!)


And then…well, I need to make a confession…

I asked Google.

Apparently, nobody who talks on the internet has ever had a good/lasting/effective result from this procedure. Everrrrrrrr. The side-effects are weird and wonderful; the efficacy ranges from nothing to ‘meh’; and O.M.G, the escalation from this to basically smoking morphine patches while bathing in cannabis bubble bath (I may be exaggerating. You can’t get cannabis bubble bath.) is freakin’ inevitable. So what if it doesn’t work?!?!?

Well, being basically an optimist, I’ve decided to view this as a bit of a TripAdvisor thing: the reason people haven’t reported the good stuff is because they’re far too busy using their sudden influx of spoons to be glued to their web forums anymore. *Nods decisively* So there. My infusion (makes me feel like a teabag) will go great, and I will feel better. So there again.

So. *Pulls Big Girl Panties right up tight like I’m a Dedicated Follower of Fashion or something – no charge for the earworm*. I’m ready.


And I’ll see you on the other side. 

A recipe for pancakes

Yesterday @agnesbookbinder posted her recipe on Twitter for pizza dough. It inspired me (fast, fairly low-cost, filling nosh) and this morning I made Good Mum Pancakes for the Boyspawns. 

Pancakes (these are American-style, and my mum calls them Drop Scones) are easy, cheap and 95% of the time get eaten (an unparalleled success rate for ANY food in my house). The recipe I use is a tweaked and gussied-up version of the basic 4ingredients one, which I give now:

1cup flour

1cup milk

1egg

Mix until thick and smooth. Heat a frying pan, oil (I use spray oil) and drop in tbsps of the mixture, well apart. When the surface starts to bubble, carefully use a spatula/fish slice/not your fingers to flip them and cook the other side. When the underneath is done, transfer to a plate to keep warm and repeat until all the mix is used up. Top with whatever you like.

That’s the basic, idiot-proof recipe. It is, however, a bit bland and boring, and (more importantly) I get bored doing the same thing over again, so…

This morning I went tropical. I used a jug to measure – the important thing is having the same quantity of flour and liquid, sometimes I use a small mug, whatever, it works 🙂 – and decided to fancy it up a bit.

SR Flour, up to the 200ml mark

two coconut actimel yoghurt drinks, topped up with milk to the same mark on the jug

1 egg

1tsp mixed spice

1 overripe banana, mushed up to a squishy mess

Best thing is, if you’re feeling lazy, this can all just go in the bowl in one go and you mix like a loopy thing until it’s a fairly even consistency (apart from random banana-lumps). Cook as above.

These came out a lot bouncier than usual, I think it’s the self-raising plus the floofing effect of the yoghurt. We like them with a little spread of Nutella on top.

According to Freckles, they taste of summer and ‘You going all weird with yoghurt didn’t ruin them!’ so there you go…

So, as long as you use 1 egg + equal quantities of flour and liquid, this should work. If I can cook it and get edible results every time, it’s genuinely idiot-proof.

Nom!

On the flip side

I am now going to attempt to balance out the negativity of my previous thread with something happy. *Puts on happy face*

Have I told you what a feckin’ fantastic support network I have?

In the ‘real’ (as in ‘have actually met them’/’am related to them’) corner I have my family: Paul and the Kids, my parents, Kris and her hubby (and Da Boys), Amelia (sis from another miss) and Andrea (parallel lives, hers is better organised!). Between them, this group of totes amazeballers (*snork*) lift me up, sit me down, offer shoulders, tissues, cake and do so much to keep me…sane. Ish.

And in the other corner there’s my Twitter family.

People I interact with almost daily – hourly, in some cases – and who make such a massive difference to my life. 

My tweeps have seen me through the good and the bad and everything in between. I have made friends for life (they just happen to live in my phone) and found, finally, people who actually get me. 

You guys; family, friends, people both actual and virtual…thank you. You make my life so much better. You give me reasons to carry on. You make me laugh, let me cry, show me love, and I love you all to bits.

Here’s to you 🙂

Oh. My. God.

(I’m now writing the rest of this post in the voice of Janice from F.R.I.E.N.D.S…just kidding! Well, i might be.)

I ‘came to faith’ in the mid-80s; a glorious time to be embracing Christianity, especially because I distantly remember everything from Queen albums to Garbage Pail Kids stickers to Dungeons and Dragons being held up as Things to Imperil Your Mortal Soul and in addition to the regular Ten Commandments plus Jesus’s Big Two (see Matthew 22:37-40) there were about a million and two other rules to remember. 

(It’s a shame about the extra rules, because these two alone are fairly awesome, don’t cha think?)

Despite the hysteria of the time, I loved church, and my church especially (we had brass band! Woohoo!) and aged ten I responded to what felt like a pretty clear ‘call’, and offered my life to God: in the Salvation Army, this meant I was saying I wanted to become a full-time minister. And I was certain this was my calling. Obviously, ten-year olds lack the maturity for ministry, so I was given some bonus rules regarding my deportment (“Show you’re serious!”) and told to wait. Fair do. I knuckled down to proving myself earnest and got on with being an awkward, ugly, Jesus-loving freak in the real world outside church. It was fun.

Aged seventeen, I offered again. Sadly at that point I was poor, scruffy and loud, so although there was more acceptance of my offer based on my age, there were…yeah, a couple more rules. Including being told I must wear full uniform – including my bonnet – when travelling to church on the bus, despite travelling alone and having been verbally harassed more than once. But who cares about a vulnerable teenage girl being shouted at and propositioned by drunk men? Jesus wanted me to wear my bonnet! And because I wanted to serve, because I wanted to prove myself, because I wanted to be accepted, I wore the damn bonnet.

(Klinger wore it better than me, and probably got less catcalls…)

Aged nineteen I got engaged to the man who is now my husband and we offered ourselves to God and the church as a unit. And (bet you can’t guess!) More rules turned up.

What followed then were sixteen years of the same pattern: hearing God’s call, responding, and being politely but firmly told that His leaders, those with their ears and hearts more firmly in line with His will, just…disagreed with Him. “Yes, God does certainly call people for ministry, and yes, He has called you, but…sort yourselves/your finances/your house/your lives out.” Did we read our Bibles enough? We should probably take some distance-learning courses to make sure. There were all sorts of jobs needed doing at church – everything from prayer ministry leadership to door-to-door collecting – which we, as prospective leaders, should be racing to do. Oh, by the way, you know how your house is a tip? Cleanliness really is next to godliness, ergo, you’re not holy enough to serve. We went on courses, led meetings, preached, served, obeyed, and got no damn closer to being accepted.

Finally, about four years ago, and following a glorious humdinger of a rejection from our then minister, my husband and I sort of drifted away from church. I’ve spent most of the intervening four years in a quasi-Catholic state of guilt, and wrestling with my many demons: acceptance, rejection, conforming, being different, not being loved, never being wanted. It’s been so painful for me. All I wanted was to serve. To give back. To fit in. And all I got back was criticism, conditions, and ultimately, rejection. It felt so good…whaddaya mean, ‘sarcasm’?

I’ve argued loudly for people’s right to have a faith over the years, but equally important is the right to not have a faith (freedom goes both ways. Revolutionary concept.) but despite my liberal stance of faith and belief and religious freedoms, oh my god, the guilt. Because I’ve spent thirty years being told how to believe. How to act. How to make sure I’m acceptable and loved. And I’ve…walked away. Who even am I anymore? Do I still have identity, or worth? 

God may or may not exist. He may or may not be interested in my life.

(If he *is* interested, I feel it’s more like this)

But if I’m going to find God again, it’s not going to be in a church. It’s not going to be by being controlled and put down and hurt and rejected in so many ways. It’s not going to be through being hit over the head with scripture…because I’m such a failure and a sinner.

These days I find myself leaning more towards Buddhism or some of the pagan religions because they make more sense (as much as religion can). You don’t know how scary this is, after thirty years of brainwashing. At the back of my head is an endless loop of sermons: I’m going to hell!!!! But if “All have sinned, and fallen short of the glory of God,” (Romans 3:23), I may as well sin my way…

Point made. Sadly.

It’s ten to nine.

I was meant to be meeting my MP in ten minutes to talk about Autism provision in our Borough, but instead I’m in the kitchen, angrily spreading marmite on toast which has gone cold and slightly wangy waiting for my attention because I’ve been having a cry where nobody can hear me then panic because I’m crying and start a crying train (like a vomit train, but less…obviously spewy).

I was meant to be meeting my MP, but I’m not,because this morning my husband is so paralysed with depression and a screaming sense of wrong that he is unable to get out of bed. At all. It took fifteen minutes nagging to get him up to go for a wee and an hour until he could speak clearly.

I was meant to be meeting my MP, but because he couldn’t give me the term-time appointment I requested, and because my mum already has Kezziah (diarrhoea quarantine, lovely) and can’t have the boys, I won’t be going because I have nobody to babysit for thirty bloody minutes.

I was meant to be talking to my MP.

An adult.

Outside of my house.

I was meant to be going out.

And now I must stop crying and whinging at cyberspace and attempt to get the spawns to eat this unappealing, cold, rubbery, slightly mangled toast of emotional displacement.

Wish me luck! (send donuts)

image

To My Daughter

Dear Kezziah…

As I begin to write, it’s 8.29 on 21st March 2016. At this time, on this date, in 1999 I was in labour.

It had been a long, difficult, stressful event for both of us. By now we were both tired, and were about to enter three and a half hours of…well, Not-Fun. But at the end of it, at exactly midday on the fist day of spring, you were finally born.

You know the story of how I heard the bells of Chelmsford cathedral ringing as you were delivered, and how there were daffodils blooming. It felt like the whole world was as pleased and relieved your were here as I was.

The next few hours were a bit of a blur. Grandma and Grandad came to see us; Grandad held you and you were completely silent, just looking at him. Grandma brought sandwiches and drinks for Aunty Kristen and Daddy (who had both had a worse time of it than either of us, as there’s nothing worse than feeling powerless), and then they took Kris home for a proper sleep.

Later on Granny and Grandad came to see us and you were cuddled and cooed over some more.

Daddy finally got to go home and get some sleep…Although I’m not sure he should have been driving, he was that tired!

And then.

And then it was you and me. On our own.

I looked down at you: small, orange-red, wrinkled and grumpy, and then (this is the point where I’m meant to say I instantly fell in love with you, so sorry in advance) I panicked.

I had a baby.

A small, vulnerable, utterly helpless person who was completely dependent on me for pretty much everything.

In modern terms: O…M…G.

I don’t think I slept at all, that first night. I was waiting for you to die in your sleep without me noticing (I understand this is a fairly traditional first-night activity for new mums), and every time you so much as squeaked, I held you or fed you so you didn’t wake up the rest of the ward (all of whom were dealing with new squeaky people of their own and probably wouldn’t have noticed).

Every so often a midwife would come to prod one or the other of us, and they’d reassure me everything was fine, stop worrying dear, and they’d go away and I’d start worrying again.

You were 8lb 12oz when you were born, and although that’s a really good weight, you still seemed so small. So inexpressibly tiny. And I’d made you!

Maybe one day you’ll get to look down and see the tiny person you’ve made, and maybe you’ll understand. Maybe you won’t. But there really is no word or concept in English to properly convey the mix of love, happiness, terror, excitement, distress and hope I felt every time I looked at you.

We were home by midday the day after your birth (retrospectively a mistake on my part, and I’m sorry) and we discovered that (contrary to popular myth) parenting is not instinctual, mothers don’t just know what to do, and it is in fact the hardest job in the universe. But we learned together. Eventually! (I said that in a Manuel-from-Fawlty-Towers accent)

The seventeen years between that day and this one have been eventful, haven’t they? I don’t think either of us could have imagined or foreseen most of it on that first terrifying day…but we’ve faced all of it and we are doing well.

You’re blessed in your family. Yes, even your brothers! Don’t ever take them for granted. Be there for them, let us be there for you.

You have more potential than you know. There are no limits, and whatever you want to do, we will support you…Unless it’s becoming a serial killer 😛

I hope every day you know how loved and important you are.

I hope every day you realise how proud we all are of you.

I hope you know that we, that I, have always got your back.

I am so proud of you. Of the child you were, the woman you are becoming, and the amazing human being you are right now.

Thank you for being my daughter, Fluffy Duck Bum, Pickle, Baby Girl…my Kezziah.

Happy birthday, Baby. Have a wonderful one, and many, many more.

All my love,

Mummy xxx

An open letter to those who could help

To Whom it May Concern:

I am writing to you as the mother of three children with Autistic Spectrum Disorder, and the wife of a husband with the same.

My daughter, who is seventeen, has also recently been diagnosed with anxiety and depression following a breakdown which means she hasn’t been fit to attend sixth form since last November. My husband also suffers from anxiety and depression which means that he has spent more time off work sick than at work over the last two years.

The main reason I am writing is to make you aware of the complete and utter lack of autism services within Warwickshire. In order to get my husband’s diagnosis we had to go to a private psychiatrist, where we paid £600 for two one-hour consultations and a letter.

My children were diagnosed via Child and Adolescent Mental Health Services/CAMHS – this is a service which does valuable work, but which is also regretfully stretched beyond breaking point, leading to long waiting times and sometimes regrettable gaps in quality and continuity of care.

The psychiatrist we saw in order to diagnose the children was wonderful. And, knowing that we’d been ‘lost in the system’ after our initial consultation and that member of staff leaving, made sure that the process was as quick and painless as possible – this meant that all three children (then aged 14, 7 and 4) were diagnosed within three weeks of each other. What a relief it was to get that diagnosis!

And then everything just…stopped.

Imagine you’ve received a diagnosis of a life-long, life-altering *physical* condition such as diabetes, or MS or kidney disease (just for example). The doctor confirms that yes, you have this, and then LEAVES YOU TO DEAL WITH IT YOURSELF. The research, the treatment, the ongoing support – you do all of it yourself. it wouldn’t, couldn’t, shouldn’t happen, right? Specialist care and information is VITAL to ensure correct management and best possible quality of life for for the person with the condition.

This is Autism Services in Warwickshire. Or rather the LACK of Autism Services in Warwickshire.

Suddenly I had three children with what is a serious neurological condition, prone to a variety of co-morbid mental health issues, and within eighteen months my husband too.

Left undiagnosed, Autism Spectrum Disorders can lead to increasing isolation as life progresses. The sense of difference can mean a higher likelihood of depression and suicidal ideation (as is shown by my husband and daughter, and my nine-year old son is already displaying definite signs in that direction).

Instead of being given signposts, information, support or guidance, I was left to myself.

A recommendation was made that I contact Integrated Disability Services/IDS (who deal with children’s disabilities in our area) and apply for the Autism Parenting course. I have applied for this course four times in two and a half years, and am FINALLY on a WAITING LIST to be trained to parent my children.

I.D.S have apparently assessed my children at school on several occasions and have informed me that my kids are fine academically. This is despite me telling teachers, teaching assistants, social workers, SENCOs…anyone, really, that my children find school incredibly difficult.

Did you know my kids, like many High Functioning Autistics, are chameleons? At school, in social situations, they have protective camouflage. They can’t entirely disguise what they are, but they sort of…blend in. They conform. They don’t rock the boat or act out, and are generally good kids.

But when they come home…BANG.

My daughter, before her breakdown, would come home, scream at me or her dad, then disappear into her bedroom for hours. In addition to the ‘normal’ issues of puberty (academic pressure, horrendous bullying) she was also dealing with the overwhelming sense of difference and trying to be ‘normal’. She was predicted all A-C grades for her GCSE’S, and got C-F grades instead. I’d spent a year asking for her to have a prompter for exams as she gets flustered and lacks concentration, but they said she’d be fine.

Instead, she was left to her own devices and didn’t get the grades she wanted for her sixth form courses, ended up taking a bunch of stuff she hadn’t planned for (this is important) and had a breakdown. (Incidentally, her practical grades were all significantly better than the theoretical papers.)

My older son comes home and picks fights. He is physically and verbally aggressive, especially towards his father and brother, and talks regularly about harming or killing himself. (Funny story: I phoned the doctors about this LAST SUMMER and he referred my son back to CAMHS…who, without even SEEING my son, diagnosed it as a problem AT SCHOOL. They referred in turn to IDS who apparently did a school observation and said the problem was AT HOME. When I phoned IDS to refer all three kids again for home support because they were struggling, without a home visit IDS decided the problems were AT SCHOOL. See why I get a bit cranky sometimes?) My son also has obsessive behaviours, and worries about everything. He cries himself to sleep worrying.

My youngest child, who is now seven, comes home, puts a dummy in, grabs his security sheep, and doesn’t speak. Unless it’s to demand my undivided attention, pick a fight, or to insist on a fair go on the games console.

Getting any of them to eat properly is a nightmare. Sensory issues and obsessions mean that the normal quirks of childhood eating (nothing but chicken nuggets for six weeks straight, only one brand of beans is acceptable, yes I ate it yesterday but I hate it NOW) are magnified and reflected and bent back on themselves.

Bathing is a nightmare. All four of ‘My Herd’ regard personal hygiene as something which does not apply to them. Bathing is a drawn-out process of negotiations, bribery, blackmail, threats and exhaustion. They will wear the same clothes for days on end. Dental hygiene is also a no-go.

My older son is obsessed with public transport; the other three won’t touch it with a bargepole. Since he was three he’s also regularly mentioned he’s going to be a woman when he grows up, and as Autistic kids seem to hit puberty harder and earlier than Neuro Typical kids, he’s currently drowning in hormone soup, and extremely miserable and confused.

My sixteen-year old daughter is obsessed with, and word-perfect on, My Little Pony. We aren’t getting her driving lessons for her seventeenth birthday; she’s getting a bear and a colouring book.

My youngest son cannot poo on a toilet. We don’t know why. Eventual referral to the school nurse led to the same advice I’ve been getting since he was three (which obviously hasn’t worked). Pooing is done in pull up pants, and involves a ritual of running round the room, kneeling, and touching his head to the floor. He’s managed four ‘proper’ poos in his ENTIRE LIFE.

As my husband gets older he is becoming more and more withdrawn. He has literally one friend, only since my husband became unable cope with attending the youth club they both set up, he barely sees him. He doesn’t phone people, talk on Facebook, use Twitter…he’s alone and happy to be so.

And the worst thing is, they struggle to function AS A FAMILY. I spend hours interpreting and mediating and negotiating between the four of them so our family has a semblance of peace and cohesion, because each of them is an island unto themselves with only occasional need for human contact.

I’ve digressed, haven’t I?

The point I was intending to make is this: since diagnosis, my family has been pushed from pillar to post.

Nobody will take responsibility for helping us to understand or manage this complex, life-changing condition.

Most of the information and strategies I utilise have been gained from speaking to other Auty Parents on social media – and a better community of Superheroes I have yet to meet.

I’ve (after eight months of waiting) been assigned a social worker to assess me as my husband’s carer. She’s trying to get my kids help via Integrated Disability Services through the back door, hoping that a social worker’s referral will count for more than a parent’s…because after all, what do I know?

I did not, do not, want OR expect everything handed to me on a platter.

I don’t want benefits, freebies, hand outs or for someone else to take responsibility for raising my family.

What I did want and still need is information.

Clear procedures and protocols for getting help from the right people.

To be listened to. (This isn’t just me: SO MANY of my friends with special needs children are treated by ‘professionals’ as second-class citizens in the care and rearing of their own kids. We may not have qualifications in child rearing, or letters after our name, but we DO have 24/7 actual EXPERIENCE of our kids. We KNOW them; their oddities and needs and personalities. Try listening to us!)

It’s not a lot to ask for, is it?

Information.

Protocols.

Basic respect.

Maybe (because every person has a dream) I could also wish for better funding and staffing for Mental Health Services, both child and adult, lower waiting times, better communication between professionals and carers…but that’s probably a dream too far, isn’t it?

Thank you for taking the time to read this letter. If you have any power or influence, I’d appreciate a signal boost.

Even if you don’t, actually – us little people have more power than we know! – but anyway, thank you from the bottom of my heart.

Kiera Bruce
Exhausted Mother, Wife and amateur UN Negotiator on a Domestic Level.