I Got The Moon

I treasure this photo of my four babes, it's so hard to believe they are all teenager's now!

All have grown, and three have matured - only my Sweet Sam is still as innocent as on the day this was first shot.  Yet he has grown, and so have I.  

We are both in a much better place than in way back then. 

Last night, having tucked my brood up, I locked the house up tight and propped up by a multitude of pillows, settled into bed with my trusty book.


All stayed quiet for the best part of an hour.


Until.

A clang and a commotion came rattling from the garage.

Did I mention our house is in a pretty isolated spot?  My husband works from the UK mainland every other week?  My dog never barks, and loves strangers (possibly burglars)?


And yup, this week I'm the only growdie-up at home?


Shit.

Seeing no need to rush to my doom, I don my fluffy slippers and robe, go for a quick pee (wouldn't do to wet myself in the face of being slaughtered), and tip-toe down to the kitchen for the carving knife. 


The garage has a door leading directly into the house, one I lock up every night.  Whoever had been in there had obviously found their way through it, as I could hear them clattering about inside the hallway now.


Okay, enough is enough - time to stop the buggers where they stand, it's time for my (silent, hesitant) chaaaaaaaaaarge!


"Oh, hello Mum."


"Sam??"


"Can you help me get the ladder out?"


"What the- what are you doing??"


He's struggling to lug the step-ladder round the passage and out again through the back door.


"I want to climb up to the moon."


"What?"


"I want to go up and hug the moon."

I can't help but to laugh.

"Sweetie, I think we'll need a longer ladder for that."


"No we don't.  Come see."


His face is lit up almost as bright as the cloudless night.  Excitedly, he pulls me outside, and as I stand there gazing up through his eyes, I almost grasp what he sees.  Sure enough, it's certainly got to be well worth a try. 

Besides, aren't we here now?


So we prop the ladder against the house, me standing sentry behind, as he climbs up, one wobbly step at a time.  I can hear him giggle as he reaches the top - his arms reach up and spread (my heart in my mouth) - as he turns, pure joy in his eye.

"Look, I got the moon!"


And laughing, suddenly I'm blinded by tears.

Sweet Sam, Mine

 It's stormy out, the ferries are cancelled, and I see the trees are fair lashing about down in the glen.  Sam is not a happy camper.

"The wind wants to sleep with us tonight."

I promise to have a word with it.

He's not convinced, "No, it's shouting too loud, it won't hear."

"Well, we won't let it in, okay?"

Agitated now,  "That's no good, it'll just bang the door and knock on the window all night!"

"Sam, please DO NOT open your window tonight."

Upset, "It wants in!"

"Oka-aay, well, it can come sleep with me then, alright?"

"Promise?"

Looking him squarely in the eye, I find I can't lie, this lad's had to wear far too many broken promises from me as of late. 

"Och no love, I'm sorry.  But how about if I put a mattress down in my room and you come in to sleep with me?"

A frustrated sigh,  "No."

"Why not?"

"You snore."

(Bloody cheek!  That's a heinous distortion - I do NOT snore - he tells EVERYONE this!  I may breathe a little heavily at times, but it's his dad who's the champion snorer!  As far as Sam is concerned, as his daddy walks on water, that God-awful racket in the dead of night simply has to be from my throat, not from his precious father's, oh my, no, for you see his daddy - unlike me - is just as perfect as perfect can be, and even then some, with a flaming halo attached to the top.  Um, oopsie, I'm ranting, aren't I?  Sorry.)

I sure hope the roof doesn't blow off tonight..

                                   _____________________

Turning eighteen is not proving easy.  As an "adult", Sam no longer qualifies for a placement in full-time education, well, he wasn't given that last year, either - full time education that is - but he did at least have a four day, part-time placement on a life-skills course at our local college, where he was able to mix and to socialise with other folk such as himself.  

This course ended in early July, and Sam's been offered no other daily outlet from home, other than the two part-time days he's only recently begun (three weeks ago) back at college.  A third day was then later added, working at a garden centre - which he now absolutely loves.  They give him a wage-packet (£2) at the end of the day, which he is SO proud of.  It makes him feel validated, useful and worthy, and is building his self-esteem up no end!

So yes, that's great, and certainly a welcome change from the months of having had only his boring, old mother to hang out with all day.  Thank God for his evening clubs, those run by several charities, otherwise he may have gone plum stir-crazy.  (Of course, it still falls to me or to his dad to get him to where he needs to be, and home again.)    

So yes, three days a week Sam is now given a purpose to his day.  However, we were promised (months ago) he could count on having a five day week in place by now, and Sam is keenly aware of that.

Over the summer, at the urging of Sam's newly-appointed social worker, we visited with and enrolled Sam up to attend a scheme we are all very excited about.  We were given to believe this would begin on the same week as he re-started college.

This place is a recently opened new venture to the isle, specifically geared to offer work-shops and social outlets, to young adults who live within the autistic spectrum.   They cover everything from bicycle repair, painting and decorating, computing, or cookery, to loom-weaving, carpentry, gardening or pottery - all taught in this shiny-bright, wonderfully equipped, purpose-built centre.

His social worker recommended Sam have a full two day placement there, and after meeting him, the centre happily endorsed this.  We were delighted, as Sam has fallen in love with the place.  I can't tell you what a great vibe there is there, the energy, warmth and dedication of the people running these workshops is obvious.               

So yes, poor Sam has been asking me every day, "Is it this week I  start at the centre?"    I invariably tell him perhaps, but I'm not sure, because I'm still waiting to hear back from them.  Sam is lost without his time-table, he doesn't comprehend uncertainty - in his world things are either black or white.  And he TRUSTS me.  I have lied to him.

I call Sam's social worker at least twice weekly to ask what's happening, but he always seems to be on the brink of waiting for his line manager to approve it, or for her to have a meeting with her boss to give us the go-ahead, but then it seems that he, her boss, must now chase the bean-counters down, to release the funding required for his placement to happen there..

And so it goes on..

Being told it was a given, I've allowed Sam to set his heart on this place. Last week his social worker came back to tell me he can only hope to secure ONE day a week there for Sam now. Imagine how betrayed Sam felt. I had PROMISED him two days.

On Monday his social worker expressed concern there may not be enough money in the pot to secure any place at all now for Sam there, but that he's still working on it.

Wednesday, he told me everything is on hold. The centre manager had to leave due to personal circumstances, and until the staffing issue is resolved there, nothing can move.

I am so verily tempted to apply for this position, myself.   What do you think?

Serendipitous

So, this weekend, clad only in my trusty robe and fluffy slippers, I go to grab my first brew of the day, and near scald myself as Sweet Sam thunders up from behind to scare the bejesus out of me.

"Mum, come up the drive mum, quick, quick, take the camera!"

"For fuck's sake, it's barely 9.15 of a Sunday morning." 

"Eh?"

"There's lotsa' folk n' bikes up there.."

"Yeah?  Whoopee-do.  Pass me the milk, will ya?"

Oh darn.  I forgot.

"Happy Birthday, Sam."

Now I feel a shit. 

I didn't really forget, he still has presents and cards and cake and stuff, but it's real EARLY for a relaxing weekend morning, y'know?

"You've gotta' come!"

Sure, like I'm about to greet my public half-naked, bare-faced, and wearing this haystack for a hair-do?  Get real, I'm going no-where without my shower, some slap, and a hair-drier that works.

"Och, you know your dad would be disappointed to be left out, go.." wake him up and leave me the hell alone   "..And tell him."

And that's how I went and missed the whole bloomin' thing.

Apparently, Beccy tells me we did have a note shoved through our door about this a week or so back.  She swears blind she almost told me.

Hmph.

Ah well, at least Alan's lie-in was well worth the interruption of (insert evil grin), he and Sam managed to take some great pic's for us..

The Governor of the island 

Yup, you can tell it's him by his Manx tie.

 was standing at the top of our drive, complete with a dozen photographers in tow.  I've never seen so many folk milling about the place - they even closed the road to traffic for the occasion.

Look, look, look, that's MY hedge right there! 
 

A plaque  was unveiled on the house directly opposite (yeah okay, I was a little bit miffed, but seeing as how we don't own an actual wall, just the hedge, I'm trying not to take it too personally).

I had no idea the original starting point for the TT races lay right outside my own front door.

This has an etching from a photograph taken at the start of the first ever TT

And before you ask, no, I have no idea what the "4 Inch" refers to.  

I might not have got the plaque, but at least the TT Trophy sat right outside our drive..

Past winner's posing by the coveted trophy

 After all the speeches and the unveiling was through , the vintage bikes set off on a lap of honour - only the one mind - it's rather doubtful any of these bikes would make it over the mountain a second time!  See the plumes of exhaust they spat out?

And here, peeking through our neighbour's drive, you can see OUR HOUSE!!  (Yeah, yeah, yeah, it doesn't take that much to excite me these days..)

Did I mention this is our house?

Let me remind you of where our drive is..

Just in case you missed it - that's our drive..

Sweet Sam keeps popping up in most of these shots as in a "Where's Wally?" look-alike mock-up.

Bless.  What a great start to his birthday!

I claimed we'd set all this up in special honour of his birthday, and he was ever so grateful!

WHAT??  Oh, get over it, it made him happy..

Besides, we were struggling to top his birthday disco of last week..

I caught myself in the reflection!

After all the hoop-la died down, he managed to get down to opening all his cards and pressies.

And we did treat him to his beloved take-away pizza, plus yet another birthday cake, come the eve.


And so yet another year has crept up upon us.

She Went as a Cave-Woman in the End

Which is kind of fitting, since they seem to always travel in a tribe.

(Don't worry, they weren't let loose on the general public looking like this - we dropped and collected them from an adult supervised bithday party,  held at a school-friend's house!) 

And no, I did not take this picture, despite their pleas.  They had to seek out lil’ sis’ Abby, (the sensibly dressed Zombie) for the photo.

I’d sloped off for a rare, precious early night.  Propped up against a multitude of pillows,  happily snuggled up reading a gruesome, true-life murder (hey, c’mon, we all have our own way of celebrating Halloween, don’t judge!), and having just emerged from a glorious long soak in the tub, with face-mask applied, and toe nail-varnish still a-drying, I’m settling back into Shrinky-heaven.

Then, BLAM, all hell breaks loose!  Suddenly my bedroom is invaded by a bunch of cave-girls, all screaming for a photo-shoot. 

Well sod that, is nothing in life sacred? 

With hubby lumbered to ferry them around for the night, I’d thought I was safe.  Naturally, I told them all to bugger off and sent them packing  (inadvertently splintering my face mask into a thousand cracks in the process).  

"Hey Mum, you should come along, you're a natural for a Witch!"

Oh my, did they laugh - hmph, so much for dignity, eh?    
            

All the same, payback is mine (smug grin).

Seems no one told them there's good reason cave-girls don't hunt wearing four inch stiletto’s.

(No, I’m not gloating, not really – well, okay maybe just a teensy, tiny little bit.)  That's Karma, that is, for her laughing at me.  It’s okay, there’s no real lasting damage ‘tis only a bad case of the blister’s, but it doesn’t look like she’ll be playing much hockey this week.

                   ________________________________


Moving swiftly on..

Say hi to Squirt, Abby’s new room-mate.  I’ve been a very busy bunny this past week, re-decorating her and squirt’s new living quarters.               

Wish I had thought to remove my jewellery, and pin my hair up before starting in on the ceiling, ah but what the hell, it’s sure served as a sharp learning curve, hasn’t it?  

Staying on the home front, it appears Sam’s new college friend has taken quite a liking to our place.  Sam keeps showing up at the car with him in tow, assuring me his mum said it’s fine for him to come home for tea with us.

I’ve yet to meet his parent’s, as it’s proved rather difficult to talk to them.  On the rare occasion I have asked A. to pass his mum on, she’s refused to take the phone, claiming to be too busy.

 WTF??? 

I eventually managed to have a brief conversation with his dad, who, without even enquiring where we lived,  happily gave me Cart-Blanche to have A. back to our house anytime he pleased.

Hmmn. 

A. is a sweet lad, very gentle and caring around Sam, but he lives 15 miles away, and I truly have to juggle to drop him home again.  Sam has clubs after college, and the girls invariably need a ride after school to their various sporting activities, frankly, I’m spread pretty thin as it is with hubby off the isle.  That said, this is the first real “friend” Sam has ever made, and I have never seen him so happy as he’s been over these past few weeks.

A. joined Sam’s life-skills group in September, along with a group of other kids from a previous school.  I believe he lives with Asbergers’ (a form of autism), but it isn’t coupled with the severe learning difficulties which Sam and most of his peers have.  I’m told integrating these new kids into this course has proved challenging to the tutors.  Far more able and independent, most of these teenager’s have been excluded from previous mainstream school(s) due to disruptive behaviour.  The majority  of these guys appear to suffer from ADHD (attention deficit disorders) and have special needs very different from the ones Sam and his regular group live with.
 
As a teacher recently confined, “I now count the day a success if I can reach the end of it without serious incident.”  As you might imagine, this has given me more than small cause to feel worried.

That said, A. is not at all the stereo-type I expected.  He may lack some crucial social skills (a common trait in those living with Asberger’s), but he is kind, eager to please, and very easy to be around.  True, he does get bored and has a short attention span, always jumping from one activity to the next, but he does have the ability to focus on those things which do interest him, and one of these, as luck would have it, is PlayStation.  Sam and him both share a mutual love of gaming, and can happily spend hours together playing on it.

He does invite himself round far more than is convenient, and asks to sleep over every time.  I usually parry this request by saying I need to clear any overnight stay with his parents first.  Last week A. phoned me, and passed his father on the line.  He had no objection to A. staying Saturday night with us. 

Sigh.      

It’s not that I mind him sleeping over, not exactly, it’s just that it’s hard work explaining to him why Sam doesn’t enjoy the same freedom as he does.  For example, Sam is functionally illiterate, and unable to so much as cross the road on his own, he never goes out without a responsible adult to accompany him.  A. on the other hand, makes the fifteen mile journey into college on his own, and his hobby is fixing up motorbikes (seems his parents are keen bikers).  A. gets restless here, and tries to entice Sam to go out with him.  I can never allow that to happen.  So it wasn’t without a little misgiving that I agreed to have A. spend the weekend with us.  Setting a Saturday drop-off time for 3pm, I figured I could probably summon the energy to cope for the day.

Both he and Sam were very excited at the prospect, and could talk of nothing else.  I reminded A. to pack his PJ’s and toothbrush, but it turns out he usually sleeps in the same clothes as he wears during the day. 

Everyone to their own, I guess.

On the appointed day, despite his father having agreed to the 3pm drop off, A., very conspicuously alone, landed up on our doorstep a full 5hrs earlier than expected.  His dad hadn’t even seen fit to ring the doorbell before driving off.

Luckily for A., least we were at home.

The weekend was fine, there were no problems at all – it was tiring, but successful – both the lads got along like a house on fire.  However, on the ride back to A’s home, a few things came up in conversation that almost had me crash the car!!

 
Oh hell, I started this off as an up-beat post, now look to where it’s heading!  Truth is, A. behaved himself impeccably well during his visit, I truly like this kid, and am (okay, was) thrilled Sam has a friend.  

Driving along, I attempt to make small talk.


Me:  So do you have any brother's or Sister's, A?"

A.  "Yeah, he's 18.  I hate him."

Me  "Surely not?  He's your brother, brother's should stick together."


A.  "He used to smack me about, but I can flatten him now.  He's not got ADHD or nothing, he's normal, but he still got expelled from school."


Me: (warily)  "Yeah?"


A:  "Yeah, he's racist.  But I don't like them either - what do you call them, them who speak funny?"

Me:  "Um, immigrants?"

A:  "That's them, yeah.  Steal our jobs, don't they?  And they got him kicked out of school."


(Long silence.)


A:  "My brother got a job, but they sacked him for stealing mobile phones."


Me:  "He stole the boss' phone?"


A:  "No, it was a mobile phone shop."


(Even longer silence.)


Me (brightly attempting to change the subject):  It was nice of you to help Sam out when he was upset at college last week."

I'd found A. comforting Sam, who was in tears, when I'd come to collect him.  A girl he likes had told him to shut-up.  A. had put his arm around him, telling him she didn't mean it.

A:  "That's alright, I've known Sam for a long time, he went to (Sam's old school) with me."

Me (puzzled):  "Really?  How come I never saw you there?"

A:  I only went there two afternoon's a week, they wouldn't let me go full time."

Me:  "What?  That's terrible, why ever not?"

A:    "Dunno.  They sent me there after I broke my teacher's arm. My mum told her not to get in my face.  If I ever get mad, all you gotta' do is hug me, everybody knows that.  Even mum said it wasn't my fault - served her right."

(Panic - panic - panic - eeeeeeeeeeeeeeeeeeeeeek - keep drivng Shrink,  focus, focus!)

Me:  "Shall we just listen to the radio for a bit?" 


           ____________________________________

(Mental note to self:  NEVER leave Sam alone with A. ever, ever again.)

Happy Families

Sweet Sam was very muted on our trip away.


It’s quite a conundrum finding a holiday to suit all our family’s needs. The girls wanted a sun, sea and sand get-away, a place where they might mix and mingle, make new friends, and generally spend a lively time.


I had doubts. Sam doesn’t take too well to change at the best of times. The way he is wired, he doesn’t filter out the noise of crowds in the way most of us do, he is easily overwhelmed, and most often unable to cope outside of his safe and familiar comfort zone.


Plus these days, looking far, far better with my clothes on rather than off, the thought of strutting my stuff by the pool side, measured against lithe, nubile 20-something-or-other bodies, well, it hardly appeals, y'know?


We are blessed to live in a house large enough to be surrounded within our own grounds, where Sam and I are mostly shielded from the outside world. Aside from school and his occasional social outlet, (his special needs clubs where he feels safe and accepted) he is perfectly content and happy to contain himself to walking in the garden, perhaps so far as to the glen, and even to sit by the river to watch the fish swim by. If not doing that, he is in his element simply closeting himself to his room, where he either listens to his beloved Manx radio, or watches various points of the island via web cam from his laptop. He also enjoys his Play Station 2, (so long as it involves cars or motorbikes), or watching (part of) a Man United footie match on the telly, 'though if the opposition scores, he fast loses all interest and switches off.


It can be quite a challenge to persuade him to vary this routine.


Holidays are rarely easy.


Yet.


I so wanted to have a “normal”, enjoyable week, one where we all could look back on as a happy, bonding vacation together. My first preference would have been a villa, one with a private pool, but alas, outside of Sam, no one else voted my way.


Understandably, the girls are weary of always stepping down for Sam’s needs. I understand that. They are mostly gracious, and usually look out for their big bruv’, they do love him dearly and tolerate much in his name. Something I am acutely aware of.


This is the first year my eldest elected to vacation away from us, and having already spent a week abroad with friends, he was happy to stay home alone and without us (to doubtlessly continue on with the party) whilst we were away. And yeah, you betcha’, passing my home over to an 18yr old to sit certainly made me nervous!


Anyhows, long story short, I caved, taking the cheap and cheerful, most popular option of us booking ourselves off on an all-inclusive family package holiday to Spain. The girls were in seventh heaven.


And poor Sam landed in hell.


Abby, the kindest of my lot, had already volunteered to share a room with her 17yr old brother. Not many 13yr old girls would be so sweet, but she knew how it would be either that or he’d be sharing a room with us – and having the insight to know her parents would already have spent most of the day sitting with and keeping him happy, she claimed she'd be fine in accompanying him overnight. Besides, as she said, she could always directly phone us if there was a problem.


And there was of course, but not too often. She only had to share my room once, with hubby sleeping in with him.


Below is a very amateur video of our first two days out there. You might note Sam is very withdrawn. It was a battle to even have him wear a daily change of clothes (he clings to the familiar, and much more so when he feels under pressure). He refused point blank to wear swimming trunks, the pool (although he swims like a dolphin) was far too scary for him to contemplate joining in. On the second day, and despite his protests, we somehow coerced him into wearing his trunks - but not without him loudly declaring, and repeatedly, how "uncomfortable" they were.


It paid off.


No amount of coaxing from either hubby or me could tempt him into the water. It was Beccy who miraculously convinced him to join both her and Abby for a float around, for with her standing guard, and Abby checking below for sharks, feeling safe he wouldn't be either ambushed, drowned or eaten, he actually managed to relax for a bit and allow himself some fun.


See his happy face?


I told you our girls are amazing. However, one excursion into the pool proved enough, he dug his heels in thereafter, not feeling the need to repeat it.


With us continually “jollying” him along, he occasionally sat outdoors with us, but he rarely spoke unless spoken to, and when he did, he hung his head down low, answering in barely a whisper. He decided he wanted me to watch TV in his room with him. Sam NEVER follows a TV programme, it’s not something he focuses on, but it was a way for him to be excused from what had became, increasingly to him, an intolerable situation.


So it was, a great deal of my week was spent in a room that had no Internet connection, only one English speaking channel on TV, and with a balcony that never caught the sun. And heart-wrenchingly, with a monosyllabic, traumatised son, staring blankly at the wall for hours.


It was a whole lot easier at mealtimes if we spent them outside of the noisy, all-inclusive hotel dining room buffet. We mainly ate out.


By the third day, both Abby and Beccy had made their own set of friends by the pool, and outside of meal-times, from there on out we barely saw them at all. Those two truly had the time of their lives, and didn’t want the holiday to end. It felt wonderful seeing them having a “normal” time with their peer-group, laughing and carefree. Beccy, true to form, attracted a bunch of adoring admirer's to vie for her attention. Fifteen year old boys have a crappy way of showing devotion, when they weren't either running off with one of her sandals, they were taking it in turns to chuck her in the pool - not that she seemed to mind. I was at least thankful she had one French, and another Spanish lad in tow - she has her GCSE exams coming up soon, and can use all the practise she can get. As for Abby, ever the clown, she also had no trouble in finding her own set of friends.


Unsurprisingly, around the same time (I had felt it building), Sam succumbed to a total melt-down in the crowded foyer of the hotel. By now he had already started to display facial tic’s, which people had begun to stare at. He is self-aware enough to realise he is different, and he hates it, his tic’s were the final straw, well, that and me. Actually, (hands raised up) it could easily have been prevented, I triggered it, well knowing the result, if only I had taken the trouble to think it through beforehand.


Except you don't, do you?


Not when you are mad.


I had one Gin and Tonic too many, actually one Gin and Tonic is too many for me, ordinarily I never drink hard liquor, I'm strictly a wine girl, meself (did I mention it was a free bar?).


Having arranged to meet up with him in ten mins, hubby, having seemingly forgot, ran off to do his own thing for the best part of over an hour, and without first having had the consideration to leave me with the key to our room.


This caused me several trips to the reception desk, then on up to our room, and all the way back down again, before finally gaining a successful entry there - and our room was three long flights up and back down again to, with a lift (elevator?) that was virtually useless waiting for. (Reception desk took three tries before coming up with the correct key for me.) It’s what I’m sure all married couples do, get annoyed with each other from time to time.. but Sam is far too fragile to ever hear a cross word between us, and he simply disintegrated when I sniped at him. I didn't raise my voice, it was far from a row, more of a hiss if anything. But I know far better than to do that in Sam's presence.


Howling, wailing and screaming at the top of his voice, whilst holding me in a vice-like grip, he demanded I, “Hug dad, be nice to dad!”


Believe me, the last thing I wanted to do was to hug (his insensitive, idiot of a) dad right then, especially considering the audience we’d drawn.
Hey ho.


Soooooooooooooo, all things considered, gee, it’s good to at last be finally back home again (inserting a shaky smile)..


Feel free to skip the video if you want - I'd quit trying to tape "happy families" by day three, anyway. 

A Bright Ray Of Sunshine

Sweet Sam captured a shaft of sunlight in this shot, which I only noticed as it came to be processed.  He also caught another..



.. but Jake was having none of it!

I thought maybe the fairies  had hitched a ride with him, (well, we all know he is pure of heart), but then a dear friend of mine (it’s okay, Chewy, I won’t tell anyone who), reminded me of a more ominous, possibly sinister interpretation..   In “The Omen”, photo’s with a shard of light spearing the head, prophesied  imminent death.

Yikes.  Maybe that’s why our Jake-the-wonder-dog is sloping off so sharply to the shade?  Ah well, that’s settled it then, no more jay-walking for me, this week..

Monday was a Bank (Public) Holiday over here, which meant no school for Sam, nor work other than the multitude of chores I’d lined up for him to do at home, for his dad.  There was an added bonus for Sam, because unlike every other school on the island, the ones his sib’s attend doesn’t honour Bank holidays. He was delighted to unexpectedly find he had the pair of us all to himself, for the day.



The local name for this glen is “Molly Quirk’s”, but now I’m regretting telling you that, since some bright spark is bound to ask me why.  I’ve no idea, okay?  Go Google. (If you find out, holler and let me know.)

I confess, being so sorely afflicted with the malady of laziness, I rarely take advantage of our National Glens, I mean, it’s a bit like taking coals to Newcastle, when you already are lucky enough to have your very own glen at the bottom of your garden, isn’t it?  But today was Sam’s day, and as he wanted us to go out for an “explore”, who were we to argue?



And very peaceful and pretty it was, too.
 
I wish I could say I always listen when Sam speaks to me, but a habit many folk living with autism have, is to talk more “at”, than “to” you.  He has certain fixations he will happily discuss at length, repeatedly, and for as long as the day will stretch.  I tend to tune out a great deal of this - simply inserting the odd nod or yes seems to keep him happy, because most of the time he is more caught up in what he has to say, rather than interested in having an actual two way conversation with anyone.  But he does gain reassurance from my echoing his words back again, a validation that I understand and know that the topic (usually one of three)  is important to him.

Today was different.



My seventeen-cum-seven-year-old waxed lyrical, not in a monotone, but with a genuine excitement to his voice.  He was curious to name each bird, to seek out every wild-flower, and all the while he wore an ear to ear grin plastered all over his face.

Physical contact is very difficult for Sam, he never initiates it, and he generally jerks away should anyone try to touch him.

But look, see?  I have my arm around him, here (insert watery smile).

(At 5’7’’. I am no short-arse, it amazes me how he now towers above me – did I blink, when the hell did all that come about??  On second thoughts, scrub that, I find I’m asking the self same question as to how  I’ve suddenly come to arrive at the grand old age of fifty, too.  Appears time always marches by when you least welcome it.  I am frightened at the prospect of Sam approaching adulthood,  the world is callously unforgiving of a child who is forever destined to be trapped within the body of an adult.)



Sam virtually worships his father, they have a very special bond between them. When Alan is on the island, come rain, hail or shine, once the work day is over, he takes off with Sam for an hour or two.

Alan is so very patient and gentle with him.

They watch the ferry leave port, or visit the Grandstand (the starting point for the T.T. motorbike road racecourse), sometimes they hike up the mountain, or climb down a glen, they often stop off to feed the ducks, or simply call off at the airport, to watch the planes as they take off.

I virtually never go along with them on these jaunts, in truth, I enjoy the break it affords me – Alan plans these little explorations as much for me, as he does for Sam.

Maybe that is why I rarely see Sam this animated and engaged,  and it was such a delight!

We made it Sam’s call where we should eat for lunch.

 

After a little stroll along the quay-side, trying out the odd table here and there, Sam opted to take us to eat indoors, at a Tex-Mex restaurant.  Once inside, he immediately, gleefully requested a huge, fizzy Pepsi-cola with ice (a rare treat for him).

  

The waiter here knows us, and he always makes Sam feel very welcome and special.  We ordered a couple of mixed platters to share, which I believe Sam demolished the bulk of (grin). .  No pudding followed.  Sam had an appetite to save..

 

.. Apparently (according to Sam), this shop serves the bestest ice-cream in the whole, wide world!

So yes, we enjoyed many rays of sunshine on this magical day out, but it was the brightest and best one of all that arrived home with us, and he was just in the nick of time to greet his siblings back, as they piled through the door all fresh, demanding and ravenous again to be fed.

(If you care to read more of  life with Sweet Sam, more posts can be accessed by clicking on the label below.) .

In Answer To Your Question

Isn't photo shop wonderful? (Grin)


"XYZ" is a government minister I met at a party we were all invited to on New Years Eve. He asked me to call him, but I thought this email would probably serve better.. what do you think?

Hello XYZ,

You were kind enough to give me your card, at Eileen's party on New Years eve. I'm the daft bint who got all choked up when you asked if there was anything you could do to help, concerning Sam (eyes skywards). Sorry about that, Champagne and me are not always a great mix!

I really did appreciate your kindness, because, in truth there may well be a couple of things which might be worth my asking of. I realise you don't have any magic wand to wave, but there are a couple of things which did used make life so much easier for us, but which have recently been withdrawn. To be honest, as Sam's mental capacity has not altered one jot, it came as quite a blow at the time.

Sam started attending a life skills course at college last year which has proved to be a huge success, I am happy to say he is positively thriving there, it was a very good move for him. Unfortunately, his transportation to and from college, something he always had when he was at school, has been denied. When he attended the special needs unit at Castle Rushen school, because it fell outside of his home area, it had been automatically granted. I'm told this no longer applies because the college is in Douglas.

Alan, Sam's dad, works in London one week out of every two, and we have four children, two of whom are younger than Sam. My case for continued transport is that were Sam fully able, at sixteen, he would be perfectly capable of making his own way to college and back. Should I be penalised because my son is disabled? Sam is very vulnerable, and is prone to panic attacks, he has no road sense whatsoever, nor the confidence to ever set foot outside without an adult to escort him. He is also functionally illiterate, and unable to read street signs. We live slap bang in the middle of the Quarterbridge Road, with no access to a bus route without a considerably lengthy journey. I've been given a journey plan which the college has suggested he attempt to take alone, it involves a mile walk and two buses. That is totally out of the question, so I have no choice but to drive him.

Also, since his transportation has been withdrawn, the transport for the respite care we receive at Braddon has also been withdrawn. Sam stays for tea there every Thursday, but this is no longer any respite at all for me. I take him there, then a few hours later have to pick him up again - frankly, it is much easier for me for him NOT to go now, but as Sam has little other social outlet, and enjoys his time there, I feel it is important he maintain the contact. The only other social outlet he has is at PHAB club, every Tuesday, something he also enjoys. By a sad coincidence, PHAB club has also withdrawn transport, as priority is given to those living outside of Douglas, and due to a recent increase in numbers, this facility is also no longer available to him. This means my girls must suffer, as I cannot split myself in two, and they are not old enough yet to attend their sports fixtures without also being ferried there and back by me.

Sam has severe learning difficulties coupled with all the added quirks that his living with autism brings. For over ten years he was granted a disabled driving permit, but when we last went to renew it, it was declined on the grounds Sam can walk and is not blind. His circumstances have not changed from when we were initially granted it, other than he is much bigger, and I can no longer pick him up if he decides to curl up on the pavement and refuse to move! His GP is very sympathetic and is fully aware of Sam's disabilities, but in order to challenge the decision to revoke his disabled badge, Sam would need to be subjected to an examination from a doctor he does not know. Sam has a phobia of all things medical, it has taken years for him to trust Dr. Bull, and as it would be far too damaging to subject him to this, we felt unable to go that route.

When I say damaging, perhaps I can give you an example? Last time Sam was subjected to a situation he could not cope with, he regressed to speaking in gibberish and became doubly incontinent for over six weeks. We lost the use Sam's disabled badge over two years ago, and since then I tend not to make any car journey with him, not without his father also coming along, unless it is absolutely necessary, which serves to only further limit Sam's already much restricted world.

(Oh dear, this is turning into quite a litany, isn't it? Bet you are regretting asking now!)

Al and I have a meeting on Monday morning with the head of Adult social services. We have chased for over eight years (and still are) to have Sam assigned a permanent special needs social worker. Over the years we have met several well-meaning, dedicated would be case workers for him, mostly this has been years in between us meeting the previous one, and each one we have met has been on rarely than on more than one occasion. Even if do we finally manage to track someone down, we are told there is no record of Sam, and any paperwork that may have existed on him has been completely lost or mislaid by his predecessor. Because Sam is not living "at risk", he is not a high priority. (I did offer to kick Sam hard in presence of a social worker, but was advised that wouldn't prove useful.)

We NEED a social worker for Sam to be "in the system", and to not slip through the net.

(Okay, I am nearly through - promise!)

There is one last, vital concern for Sam which plagues us deeply. Much as I would be happy for Sam to live with us forever, we all know that is not always going to be possible. I need to see him settled and secure for the future, when both his father and I are no longer around. I had assumed at some point, perhaps around his mid-twenties, he would have the option of moving into some form of assisted housing scheme - somewhere he might live a semi-independent life, under the security and safe supervision of a live-in "house-parent" or some such other. I've been crushed to learn from the last social worker we raised this with, that the only actual realistic housing option for Sam, will be to put his name down on the housing list for a Council/Commissioner's house, where he may be paired up with another similarly impaired adult to share it with. As he is physically able and not considered at high risk living with us, this is, it appears, the best we can hope for, that and the promise of a social worker popping in to check on him once or twice a week. Although supported housing exists, demand outstrips supply, and it is given only to those whose need is the greatest. We are told this wouldn't include Sam.

Aside from him having no concept of money, he cannot be trusted to safely use so much as a microwave oven, never mind to cook for himself (he almost set our house on fire a little while back, and that was with me IN the house, believing he was safe). This is unlikely to change. He would be an easy target, doubtless parted from his money between the post office and his doorstep by any group who saw fit to take it from him. Needless to say, this type of living arrangement is never going to happen, we MUST find a better, more suitable alternative for him, though frankly, at this point I am at a loss as to where.

Bill, you have met my son, you came upon us as I was trying to calm him down away from the firework display, you saw first-hand how vulnerable he is - and were courageous enough to step in to offer help. I am sorry if I appeared to react badly, but I am sure you realise I was kind of distracted at the time, it wasn't that I didn't know you truly meant well. As stated earlier, I don't expect any magic wand from you, (though if you did happen to trip over one, please do pass it on!) but if you could assist us in any of the above, I sure would be eternally grateful.

Oh boy, I've just remembered I promised to recount a story to you about "legal highs". Darn, seems I've rambled on long enough for now, aw well, maybe next time, eh? (Smile.)

I am so glad to have met you and your wife, it was a lovely crowd at the party, wasn't it? I've sent a bunch of photo's on to Eileen, but I am still processing the bulk of them (I like to give all the girls a little "air-brush" first, needed or not). Thanks for the support you offered, it really did mean a lot.

With kindest regards,

Sure hope it doesn't get caught up in his spam filter, eh?

It's Christmas

Sweet Sam marks out his year from one special occasion to the next.

Weeks (often months) before any event, he's up and running in a state of full anticipatory excitement. Easter, Halloween, Guy Fawkes Night, Remembrance Day, two weeks over the T.T Races, another two weeks over the Grand Prix Races, every family birthday (including pets), Mother's Day, Father's Day, Red-Nose Day, our wedding anniversary - you name it, each and every one of these gets the humongous count down.

Exuberantly compulsive, it's what Sam does best.

Our happiest teenager, he never mopes, rarely throws a tantrum, and is completely unmaterialistic. The only complaint I have is that he talks. Talks and talks and talks. Non-stop. Always on topic. The same one. Over and over again.

Weeks before our bikers arrive for the T.T., he is clutching his calendar to mark down the days. He follows me from room to room, repeating the same conversation, which I then must echo back to him. Not that he can help it, it's who he is, his entire life is a countdown to the next party.

He is totally and utterly fixated.

With it comes the rituals. He has a mug for each occasion, and Lord help me if I get the wrong one (not a hard thing to do, since he has over a dozen) not only will he not drink out of it, he'll throw the entire untouched cuppa' down the sink, he HAS to have a fresh one in his right mug. Same with his clothing, for example, he must wear a commemorative t-shirt with the correct year on it for the T.T. I am talking about him wearing this self same shirt over the entire two week period, up to and even including him sleeping in it. Yup, it gets pretty ripe a few days in, and that's when he throws his annual melt-down, when I virtually have to sit on him to pry it off for the wash.

He has boxes and boxes of decorations for every occasion. Not that we encourage this, but earning pocket money from his various chores, I guess it's his call as to what he opts to spend his hard-earned cash on. Despite energetically encouraging him to limit most of these to his room, they almost always spill over and multiply to take over our living quarters.

For Sam, unquestionably the biggest party of all, and the complete and utter highlight of his year by far, has just got to be Christmas.

Which begins in October.

(Inject deep heart-felt sigh.)

His room is transformed into a Santa's grotto. He has his own (gold) tinsel tree up there, laden down with the gaudiest baubles ever known to man (his motto is, "the louder and glitzier, the better"). He has yards and yards of fairy lights strung up to cover virtually every square inch of window and wall. I tell you, it's brighter than walking into Blackpool's illuminations stepping in there. But hey, if it keeps him happy, eh?

It's the Christmas CD that drives us bonkers. He's been playing it for weeks. See, Sam doesn't watch telly, well, not unless it's the football, and even then, he'll lose all interest if a goal is scored against his side. (Naturally, he has to wear the full kit and to have all his mascots out around him before any game starts.) In fairness, Sam does mainly listen to his Christmas Carols up in his room. The trouble is, another of Sam's rituals is to constantly come down to check we are where he last left us. Every ten minutes or so he slams the door open to yell, "Alright?", before almost knocking it off it's hinges, as he slams out again.

This can be slightly distracting when you are settling into a good drama, but it is even more so when it's accompanied by a full-volume rendition of "Jingle-Bell's" from his portable ghetto-blaster.

Drive's you bloomin' demented.

Still, I love his logic. At sixteen, he's heard the rumours Santa isn't the guy who actually brings his presents, but he is very philosophical about it. He's worked it out that Santa needs our help, "'Cos it's a very busy time of year for him, that's all." It still doesn't stop him leaving a carrot and a glass of milk out for him on Christmas Eve. And every year he is always just as awe-struck as the last, to discover nothing but a few crumbs and an almost drained glass left there, come the morn. (Grin.)

Forget the fancy lap-top's, i-pods or designer clothes: all Sam ever wants for Christmas is chocolate - lot's and lot's and lot's of it, please!

The trouble is, this year Sam has spied and fallen in love with a new tree for his room, a full bells and whistles flashing lights number, and it's plain knocked his poor golden, once loved old tinsel tree way out of favour. He has nagged, begged and pleaded for this must-have bit of bling, and since he's even been good enough to stamp up his own good money for the purchase, it seemed nothing short of churlish to deny him.

What's the problem?

Hmn.

He only wants to "gift" his old one to us, doesn't he?

It's a complete monstrosity.

He's even selected the perfect place for it. Slap-bang in the conservatory window, so it can be the first thing every visitor to our door will see. Knowing we always erect a real pine tree in our living room, he was sage enough to seek a place where he felt we could use it. (No flies on him, eh?)

It wouldn't be quite so bad if our drive wasn't already littered with countless illuminated Santa's, reindeer and Frosty-The-Snowman's. This is in November for Christ's sake's, we are clearly the laughing stock of the neighbourhood as it is.. there HAS to be a limit, right?

Even our regular tree is the subject of huge mirth. Forget those colour coordinated, tastefully decorated centre-pieces that grace most people's homes. We have the usual home-made offerings our once young children brought home from school, and I am still proud to hang them out for all to see.. but, erm.. well, Sam still makes them, big, bold, bright and numerous, more and more, each and every year. Seriously, people laugh (and yes Chewy, I am looking at you, too, Ms. Tasteful Artiste, and don't you give me that innocent stare, as I recall you almost wet yourself laughing at my tree last year, so you did. Aw, don't worry hon, you were far from alone, everyone does, it's par for the course)!!

Ah, what the hell, so what if Christmas is forced early upon us? I sure have the happiest boy in town right here with me just now, so why should I care about what the neighbours might think? (wink).

The angels Who Touch Us

One of my four children here has special needs, but can you tell which one?

Matt is the little monkey swinging in the background, Abby and Beccy are painting with Sam. It was a beautiful day at the Chelsea playground, a very special place where I could go with my family to relax and to enjoy. No judgmental stares, no disapproval, no pressures for Sam to blend in and to be "normal".

(Strange thing is, he always "behaved" himself when we were there, with love and acceptance a given, he felt no threat or fear once inside those grounds.)

All my children enjoyed this place, but for me? I truly believe it salvaged the little that was left of my sanity.

Most every Saturday, and almost every summer break, I turfed up with our bundle of nappies (three of my children here were still nappy bound!) and five packed lunches to camp out and to chill.

Back then their daddy worked round the clock, it was his way of coping. It didn't always stay that way, he just took a little time to set his head on straight. We all got through as best we could, just like the many other families I met down there. We all had had a bomb explode on our lives, it took a while to clear the wreckage away, realise the future still held promise.

And it did. Oh my, it did.

It wasn't long before my "normie" kids began dragging their playmates along there too. It is open to all family members of disabled children, as well as to their friends. Their motto is "The more the merrier". Safely gated off, and with a high ratio of staff, it provides a desperately needed sanctuary for both the parents of, and to the children of special needs.

It's a truly magical place, run on only a wing and a prayer, funded solely by fund raising and private donation, it is constantly under threat of closure, subsisting hand to mouth (which it has done for well over thirty years now). Without the dedication of the parents and their supporters there, it would have long since have been thrown to the wind.

Even little Abby played her part - oh Lord, did it rain that day! The helpers at the Chelsea Playground were only the first link in a long, long chain of back up and support that's been there for us.

Sam has grown, developed and matured far beyond my brightest hopes were for him back then. So many people have had a hand in that; good, giving, caring folk - those who were able to see the boy behind the disability, and who have strived to help this fine young lad emerge.

Next term he starts a "Life Skills" course at college, which upon completion I have every confidence he will find a job-placement from. I can't believe those four cherubs of mine are now all teenagers. It blows my mind!

My son celebrates his 16th birthday today in Ireland, watching the bike racing with his beloved daddy. They have such a special bond between them now, it's precious and deep, so obvious for anyone to see.

Our family has travelled such a long way since our first wobbly steps at The Chelsea Playground. It opened a path to so much more for us, and was nothing short of a lifeline for me back then. I've met many Angels in human form, Penny Smith who ran this place was only the first in a long, long line of them. She held me when I cried, listened when I yelled, and had the wisdom to never offer platitudes. She held her tongue, never thrust advice, and was simply there - completely.

And now, just look at where we are! So much water under the bridge, so far we have come.

(Happy birthday my Sweet Sam, you can have no idea of how proud I am of you.)

Some Things Never Change

Bear with me, I feel a rant coming on. First, here is an excerpt from a post I published way back in in May 2007:-

"She's new to the job, all bright-eyed, fresh, full of enthusiasm. (I made a point of vacuuming before her arrival, after all, you never can be too sure with these social worker types can you?)

I settle her and her clip-board at the breakfast bar, and offer tea, coffee? Water it is, then. Out come the forms, her earnest explanation as to why these need filling (again). I know she's a good person, her chosen profession attests to that, so I stifle the reflexive urge to throttle her, and instead smile, nod, and try to be non-threatening, tuning her out as best I can.

Yes, I will jump through the hoops, what choice do I have? Sam still hasn't been allocated a special-needs social worker. He did have one briefly for a couple of months, but she left over two years ago, and ever since then, there has been no one available to assign to him. The only aforementioned one he did have, kindly spent hours with me, evaluating a "core-assessment" of his needs, and of our combined plan for his hopeful future support and transition through in to adulthood. It was a draining, emotional ride for me, but knowing what a crucial step it was towards securing his long term future, I happily complied.

I know this girl before me is not to blame. She didn't lose the paperwork. She didn't wait two whole years (two freakin' years of my constant, persistent chasing), before deciding to finally fess up and to confess. It's not her fault, truly it isn't. I know this. I also know how happy it would make me to shoot this cheerful, bright little messenger, the one twittering away in her high, smiley voice, as she sits, pen-poised, here in my kitchen. I freely admit this may not result in enhancing Sams already crippled social life (he's fourteen, for goodness sake, of course he doesn't want to be with his mother all the time), nor will it supply that non-existent respite care I'm always being told of, but it sure as hell would force someone to pay attention, and Lord knows, I've certainly tried everything else.

Like others before her, she'll probably quit next week. Luckily, I don't have that option."

'Course, I was right, she did quit. Sam is now fifteen. Last week, after having had no follow up whatsoever, following dozens of phone calls, I finally succeeded in tracking yet another social worker down in the hopes she might keep me abreast of where our sweet Sam is currently logged in their system. See, it's vital that he is. I won't live forever, and he needs to have a solid support system around him, one I know that will work, for when he is on his own. Besides, he leaves school next year, I must find some outlet for him - work placement, a social club, SOMETHING to ensure he won't be left to vegetate indoors. If we don't plan ahead now he'll be hung out to dry, sadly that's how it works over here with the vulnerable in our society. I KNOW this, I have personal knowledge of far too many like Sam who have already slipped through the net.

So we started again. All the forms, the clipboard, the apology that she could not access one shred of paperwork to his name on file, together with the regrets that lack of funding cannot ensure any supported housing will be made available to Sam as an adult. Social clubs were discussed, one looked hopeful. She didn't want to raise my hopes, it was already oversubscribed. I pressed her about the long term. Quoting another case of hers, one of a lively autistic, middle-aged son presently living with loving but ageing parents that could no longer cope nor care for him, she said having tried long and hard to find a suitable, happy home for him, all to no avail, she had instructed his parents to write to her, officially making him homeless, stating they were turning him out on the street.


So, that's how it's done. Apparently.. (insert a deep sigh).




I am used to frustration. Parents like us come to expect it. I'll skip to spare you the early years, first the denial until he was almost two that he was anything but perfectly healthy (and that I was clearly insane), or of the subsequent mis-diagnosis's along the way, one of which informed us he would die long before adulthood (pregnant at the time, it didn't help to also be informed this condition being genetic, stood a one in four chance of being passed on to my future children). It was over a year before we had that sentence lifted.

I rarely wax lyrical about having a fifteen-come-five-year-old. People familiar with my blog will know I have much more to my life than seeking identity solely as the mother of a disabled child (those who do so set my teeth on edge). But there are some occasions when I want to scream. Not because of Sam, Sam is easy. It's the way he is dismissed and ignored that angers me. In my previous blog I did try to briefly address how it has been for Sam (and us) living with autism. (You will note I say Sam "lives with" autism" Sam is not "autistic". Autism is a condition, not the sum total of who he is. )


"Sam spent half the evening hunting under the breakfast bar, trying to make amends. Earlier, he had demolished Abby's supermarket, which she'd so painstakingly constructed in the playroom. Not that he did this out of malice, it was because it took up the space he needed for him to line up his cars. She came barrelling through to find me, distressed and outraged, sobbing and demanding redress. Sam is no fool, he knows when best to make himself scarce, but he's easy enough to find. I caught up with him in the garage, and requested his version of events.

Naturally, he did as he does best, and denied all knowledge. Frustrated, I informed him that thanks to his handiwork, his little sister was currently crying her eyes out in the kitchen, and I'd like him to go and apologise to her. So he did, he apologised profusely, truly repentant, and very upset. Then he set about trying to find Abby's eyes for her, horrified he'd been the cause for her to lose them. Finally, we convinced him she'd found them again, and much to every one's relief, he abandoned the search.

Most of the time, we barely notice how surreal life with Sam can be.

I call him Sweet Sam, because he truly is. He will always be my innocent child, a fact which tears the flesh from my bone. I'm done with howling at the moon, I've already mourned far too much for the child he should have been, but I will always carry this primal maternal terror for him, etched deep within my soul. He is utterly defenceless, and people are so casually cruel. Sam has changed me. His fourteen years have taught me to fight, jump up and down, and bang on a loud drum. Whatever it takes to make it better.

But he can't be "fixed", I accept that now.

The majority of marriages do not survive a special needs child. It's usually the father who bolts, and most people are quick to pass judgement, but then, people who don't live in that reality, can never understand. My marriage has survived, but it's not been without cost. We were the golden couple, our glowing future assured. We had friends and ambitions and no doubts at all about the perfect family we would raise. We were like everyone else, we were not born as parents of a child like Sam. When life threw him a curve-ball, we had no idea how to help him to catch it.

I chose to have a home-birth, because I thought I hated hospitals. I do now, but back then my yardstick was rather different, I just believed I hated them then. He arrived three weeks early, to a dry birth, my waters inexplicably absent. When he was given to me, my perfect healthy little son, the mid-wives had weighed him, checked him, and ticked all the correct boxes, this, his sure guarantee for a bright and solid future.

Later, I felt very angry about that, someone should have told us, why didn't we know?

I was so desperate to find someone, just anyone, other than myself to blame.



First came denial. My eldest sat up at four months, and yet Sam couldn't even support his own head.





We knew.





Of course we knew.





I kept waiting for someone to acknowledge something was not right. I was his mother, I didn't want to betray him, point out his damage, that's not in the job spec, surely? What about all the professionals? The mid-wife, the health visitor, our doctor? Why were they all so complacent when I presented him to them? What was all this, "Every child develops at their own pace" bullshit? I gradually dropped out of the mother and baby groups, coffee mornings, and visits with friends. I didn't want him compared next to all those achieving, bouncing babies. I couldn't bear the platitudes, and I despised the pity.






I purposefully closed the door behind me, it hurt too much to be out there.







I needed to bleed alone.


Birthing four children within the space of five years, doesn't leave much room for introspection. It's only in the past few years that I've surfaced from that fugue of early motherhood, and begun to actually enjoy my amazing off-spring, particularly Sam. My boy has achieved so much, far more than any of us, considering from where his journey first began. Each and every one of my children hold my heart firmly in their hand, they have little idea how easily they could crush it, I hope they never will.

I often wonder, having being baked and cooked to the exact same recipe, how each child has all turned out so unique. It defies all logic, doesn't it?


They are my miracles, and I am their God. It is down right churlish of me to ask for anything more. "




Well, okay maybe not. You see, it's the bureaucracy that makes life hard, like this example when some unqualified office clerk had the power to decide whether or not Sam should have his disabled parking badge renewed. Everything is a battle, it pisses me off













"Ooops. Don't tell hubby.



We kind of lost track of the time, but hey - we were parked in a blooming CAR PARK, it's not as though we were causing a major traffic-jam or anything, was it? We even paid and displayed! (Obviously not enough for that extra fifteen minutes we took, but sheesh - £50???)




The real rub is that up until this year we could park pretty much anywhere, and no one said diddly-squat about it. For almost ten years, Sam has qualified for a disabled parking badge. It has made life so much easier. It never crossed my mind that one day, some renewal clerk in a government office, would suddenly up and decide that he is no longer disabled enough to have it any more. I mean, it's hardly as though his circumstances have changed one jot from when we last renewed his badge. There was no question he certainly met the criteria then. Sure, we can appeal. Simple, eh? This involves an independent assessment from a doctor the government selects. I've no doubt he would pass that assessment with flying colours. I also have no doubt about how much trauma this would inflict on him. He flies in to major panic-attack mode at the merest hint of anything medical. It isn't just the immediate hurricane of dragging him through that, it's the longer term damage that we'd need to see him through.



The last time he was subjected to a situation he could not cope with, he became doubly incontinent, and reverted back to nappies for over six weeks, he couldn't be left in a room on his own for so much as a minute, and he talked in gibberish for months. All of Sam's problems are well documented in the book of a form I submit each time I renew his badge. This book of a form is also verified and signed by Sam's own GP, someone who is well aware of his needs.




But this little anonymous clerk sitting somewhere in Douglas, has decided we don't need a badge after all. Sucks, eh?




Thing is, Sam CAN walk. What he CAN'T do is to be left outdoors unsupervised for as much as a minute (read, my hand clamped to his) because he is a danger to both others and to himself. He has no idea of traffic, is prone to bolt, and suffers terrifying panic attacks at the drop of a hat. Parking close to where we need to be is essential since he towers above me and I can hardly carry him back to the car. I also have three other kids, two younger than him to supervise. It's a regular circus act at times.



Little wonder I hate shopping."





Okay (sorry), I'll step off my soap-box, lecture over. I promise to endeavour to be my usual acidic but more humorous self when I next post. Today I just needed the rant.