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.
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.