Saturday, 30 March 2013

Back to the Planet(s)

Woah - where have I been?

Gawd - I'm so sorry.  I don't really know.  I think I went into a kind of hibernation.

You know what I reckon?

Sometimes so much happens so fast in your life that you don't know where you live anymore.  But you just carry on and exist in this strange new world (like I have for the last few years).   And then one day it hits you that it wasn't all a dream or a nightmare or  a weird experiment or part of a plot - it's your actual life forever.   For better or worse and all that shit.

And whereas 'once upon a time' you had a life like THIS you now have a life like THIS.  And that might very well not be a bad thing at all.  BUT it might make you feel a bit weird and a bit vulnerable and it's winter and it's SO FREAKIN COLD DAY AFTER DAY and you never see daylight and you go out on placement in hospitals and live in the twilight world of 13 hours shifts (16 hours some days) and night shifts and then you get flu - proper flu where you lie in bed and think 'god if I was old I'd be dead by now' and then you get better and you go back to the twilight world and you life in a way where you have no time or energy for very much else but somewhere in the back of your mind is your blog and all the amazing and fantastic people who have stuck by your story for so many years and then guilt sets in ...... I need to write, I need to tell them..... but on you go falling through the days and thinking 'I'll do it tomorrow' when everything feels normal again.... but then you realise that you never actually feel normal and that's what this blog is actually about and who it's for - the people who get it - who never really feel quite 'normal'.   So you get your arse in gear and when you are supposed to be writing a 3000 essay you crank up itunes and get back to that thing you love - writing from your heart (rather than writing from 'Evidence Based Research' - excuse me while I fall into a pit of puff adders and think it more enlightening).

So here I am.....

I stuck at this blogging through thick and thin, for all those years, but I needed a break.  A break where I stopped telling a story and faced it.   And you know what? It's a wonderful story - I just hope it carries on being wonderful and uplifting and as hard and shitty and 'weep into a pillow and 5 pints of Strongbow' as it can be I hope it keeps opening doors in my mind and challenging and giving me this amazing ride. For better or worse.

So where were we were? Ah yes I think it was Christmas and I had a very long motorway built the length of my house by my eldest son.  Out of Lego you understand.  Not actual tarmac (yet).   I did manage to erect a Christmas tree around it - there were negotiations about the new route but I won my planning application.   The Christmas tree wasn't the most erect though and actually fell on my head whilst eating my dinner somewhere between Christmas and New Year.  There is a photo somewhere on Facebook to verify this - I'm seen peeking out beneath bauble lined branches and smiling grimly into a plate of turkey curry.  

And then it was Easter (as quick as that!?) and I tidied my whole goddam house (this is worth writing about as I don't think it's ever actually happened before on a real scale, only a 'sling stuff in the cupboards scale'  - let us call it the 'Innagrual tidy') yet within moments I have what is apparently 'The East Coast Mainline' built through it.  Complete with Lego constructed overhead power cables.   It even had a 'first train of the day' and 'last service to Edinburgh Waverley'.  All very marvellous but IT'S THE GROUND FLOOR OF MY GODDAM HOUSE.  

For those of you who don't quite get this, my oldest son as something called Aspergers syndrome.

 Aspergers is about being somewhere on the Autistic spectrum.   If you want to know the official line on this syndrome then Google it - I'm not sure what they say but what I say is that you are a different kind of normal.  You don't 'get' peer pressure.  You don't fall for advertising hype.  You don't give a shit about the 'latest craze'.  You still think Thomas the Tank Engine rocks at age 10 and you have huge admiration for Mr Bean.  You'd rather make something work properly or perfect a system than any kind of frivolous activity like making glitter pictures or doing crafty shit with bark rubbings (I long ago packed the 'children's craft activities' away in a cupboard marked 'fail' and let him get on with constructing the First Great Western rail network out of drinks straws whilst everyone else got pissed in the bar).

Biggest lesson of parenting I can give you?  Don't try and make a cat into a dog and vice versa.  Please.  Just don't.  

Now I've never spoken about my children's real names on this blog as I think they deserve their privacy as I write about my life so frankly it could all turn out jolly unfair (after all, they might not want their school mates knowing that mummy pissed in her jeans and that Grandma's springer spaniel ate Mummy's special rope.....) but we have a nickname for him - the Eggman  (because he had a head like an egg when he was born - obviously) and so I will now call him that from now on.  

His brother meanwhile is known (by EVERYONE) as Spuddy (can you guess why?? Yup head like a potato - good job I'm done at 2 or we'd be on to melon heads).  

Anyway back to the Eggman.

Those of you who have read this blog long and hard will know he has always occupied a somewhat other universe where he is resolutely sane and the rest of us are bonkers.  He likes structure and pylons and days out to nuclear power stations and motorways and maps and trains and is saving up to go to Hamburg.

Hamburg I hear you cry!? Yes Hamburg - home of the world's largest model railway - 'Wunderland' - oh the hours of that we have viewed on You Tube (yes the hours that cost me £89 because I had minimum data tariff... oh dear).

Other kids dream of Disneyland... maybe one day we will get to take a train to Hamburg.

The thing is I had never had a child before I had him.

How was I supposed to know that this wasn't 'normal'? I just thought the education system was inflexible and teachers are pushed into this shit because it presumes everyone learns in the same way and Ofsted is a pile of crap..... (oh hang on.... I might have a point there).  And I thought I was really bloody lucky because I had a kid who didn't want ££££ spent on him going to Alton Towers  - he wanted to drive down the M5 and view the 'at least 5 consecutive miles' of pylons stretching across the flat lands somewhere north of Junction 23.

I had a kid who breathed a sigh of relief at traffic jams and could stand on a bridge for 4 hours.  WAIT!!!! I HAD THE BEST KID EVER!! (Ok I'm ignoring the fact I'm often found screaming PUT YOUR SHOES ON BEFORE I KILL MYSELF or WE CAN NOT SPEND OUR WHOLE LIVES ON THIS GODDAM BRIDGE - MOVE!!!).

And then 'they' told me there was something 'wrong' with him.

'What are you doing Eggman?' said the paediatric consultant

'Building a motorway' said the Eggman from the floor (where he'd been for the whole hour long appointment)

'Where does it go?' enthused the paediatrician, filled with 'what kids like' jollity and enthusiasm

'Erm from that side of your room to the other side of your room' said the Eggman rolling his eyes and looking at the doctor like he was the one needing help.......

And I thought 'well the Eggman has a point and you know what I'm trying to cope with my whole life imploding and the fact that the rest of society finds it odd that my child can draw maps of everywhere he goes from an aerial point of view and loves pylons and trains and thinks jolly phonics is pointless frivolity and can direct you to Carlisle even though he's never been there but YET can't write a sentence you can read but GET OVER IT - on the scale of world problems this is not actually me and the Eggman's problem. Why do you hold writing higher than BEING FUCKING AWESOME?!?!'.

But as any parent of a child with different needs will tell you, the older they get, the more difference shows.  

I watch him walk into school - he hitches up his trousers so they are ALWAYS 2 inches higher than the top of his socks.  I don't actually know how he does it - it doesn't matter how long his trousers are he makes them look like crazy people's trousers (because I suppose they are 'crazy people's' trousers now..... and then he has his hood up (whatever the weather)... and then he asks a 9 year old if they want to play 'selling train tickets' and then a reception age child wrestles him to the floor and he looks up at them and raises an eyebrow and says 'just WHY would you do that? This is MOST unsatisfactory'.  

As more than one person has said to me 'he's like a smaller wilder looking version of Jack Dee'.

And let me tell you people - the world needs more smaller wilder looking versions of Jack Dee.

It could save us all.

And god I love him.  I think he's freakin brilliant.  I think he has the key to a better, less consumerist, non 'keeping up the Jones's' way of being where we aren't sold down a river of debt in the name of progress.......

But anyway back to Easter.  Where according to the Eggman Jesus was killed by an Inter-City 125 (followed by much chortling at the sheer hilarity of such a concept) and for those of you who still need to know more about Aspergers here is a real life Easter-themed practice based learning exercise provided to you courtesy of The Eggman:

A class of school children are told they will all being getting a real life chocolate egg once they have designed a box for it - they can design ANY BOX THEY LIKE!!  Think of the possibilities!! Think of the creativity!!! Think of fun you can have!!!!

So the class get to work....they make dog kennels and JCB buckets and nests and Justin Bieber's thong (ok I made that one up but you get my point....someone probably did)...

...and one boy made a box.

Just an egg sized  box.

A box with a best-before date and a weight and a bar code and ingredients list.

And when asked why he didn't do 'more' he simply stated that somebody else had already designed the perfect Easter Egg box - it fitted just right onto supermarket shelves and into lorries and complied with the law.  So what on earth were the school playing at making them waste time on this nonsense?

And I'd like to publicly thank the amazing Sian (you know who you are) who told me ages ago that I'd need to change his school and gave me the boost to actually do it and put him in a place where they GET his awesomeness.  And don't just say 'your child is like a Sloth'.  

I spent all those years unknowingly having my vision of childhood deconstructed... and I built a new one around the amazing planet Aspergers but I didn't know it had a name and I didn't know that society didn't think it was 'normal'.  I thought it was just the way it was........ which in the Eggman's case it is...... and then I got given another child...... a child who I never tried to do 'normal' stuff with.... because I thought it was all a con!! And then the other child (the one with a head like a Spud) got madder and madder and the official people told me the original child was 'different' and I thought 'ahhhh so THIS is a normal child!! The one I thought was bonkers!!!'.  But by that point the 'normal' one wasn't being quite so normal anymore.... if he ever was goddam normal......

And then the Childminder said 'have you ever considered that your Spud child has ADHD because I've never come across a child more boisterous and crazy and risk loving and bloody MOTOR MOUTHED before - he is incredibly hard work.  You do know that don't you?'.    No I thought - I didn't - I just thought that being a parent is incredibly hard work (because it is!).

And  then I thought 'oh shit, don't tell me the one I thought was bonkers and was then persuaded was normal is actually bonkers after all? Just LET ME REST!'.

But then as several people have pointed out..... he's not got a 'disorder' love, it's just that YOU'RE his mother. Whether he does or not he's who he is and he is also frikkin awesome (at this point I'll leave aside the bit where I said to my mum 'Jesus - for the way this whole child raising shebang is going I may as well have kept on drinking and taken up Crack for the way these two have turned out).

And Amen to that.

And all the people who don't fit the box.

And to all the people who embrace the way of being we have inside our head as good enough.  

And to all the people that challenge society with regards to it's values of what is 'a good life' or what 'adds value'.

The world would be a far poorer place without people who gain pleasure in staring at rows of pylons.

If you don't believe me then you are missing out.

Life would be freakin dull if they didn't exist.


  1. Aww, you & the boys are freaking awesome! I love the way aspergers kids look at life from a different angle, & whatever they come out with, you can't fault it :) My son is nearly 20 & has just finished building his first rather amazing computer, & just think, a few years ago I was told dismissivvly that he would never even learn to tie his own shoe laces ;)

  2. Your boys sound awesome...more power to them for viewing the world differently.
    I'm so glad you found a different school for Eggman - the education system doesn't like children to be "different", they prefer the ones that fit perfectly into a nice little box that can be ticked.
    I am in total awe of you - you go girl!!
    Hugs xx
    p.s. I thought the answer re the Easter Egg box was perfect....why re-invent the wheel?

  3. So brilliant to find a post from you, often wonder what you are up to........Happy Easter to you and your brilliant boys

  4. What a fantastic life-affirming Easter post. There's a lot to be said for being original and different. I'm glad the Eggman is in a school that appreciates this. He sounds a cool kid.

    I hope that you and your awesome boys had a lovely Easter.

  5. Us parents of youngsters with additional needs all have raised a knowing eyebrow or two at our education system.My 14 yr old has just been ceremoniously kicked out of his school because he is being naughty; Heads speak for we dont understand this ADD and Aspergers stuff.So now I am trawling the schools to find one that will understand what a truely fantastic son I have, and that when he corrects the teachers he's not being rude he just know's he's right, in his world.
    Keep plodding it doesn't get better, we just get better at plodding on; and they are worth it. Hugs Lizzy x

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