Wednesday, September 10, 2008

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.


Berthddu Suit said...

The helps never there when you need it, yet someone will always manage to slap a ticket on your car. Just about sums up this country doesn't it? I do feel for you and I hope you find a resolution soon.

Kit Courteney said...

We all need a rant at times.

Some of us rant about silly things and some about real, big, scary things. But ranting is essential.

I'm learning a lot from your blog, so I thank you for being so open.

RiverPoet said...

Having dealt with the bureaucracy myself because of my "special" kids, I feel this rant deeply. We were fortunate that our son is high functioning and figured things out - to an extent. He will always be "different" but has surrounded himself with friends who appreciate him.

I especially liked this line: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?

Our daughter is mentally ill and has been a complete handful for many years. Now she is out there in the world making a complete mess of her life. I don't know how she came to this, but it certainly wasn't because we didn't try as hard with her as with did with the Boy.

I wish you well as you continue to navigate the red tape.

Peace - D

Suldog said...

You call that a rant? Some folks in your position would have covered the page with curses and left us all spattered in blood.

You have what is known in some circles as "grace under fire." I applaud you. Feel free to "rant" anytime the mood strikes.

Fletch said...

Thanks for resurrecting the older posts to remind us regulars why we visit your page. My mind immediately leapt to the Sam & Kicoo/Lynus story.

You've also managed to remind me of my reason(s) for keeping 'Snivel Servants' at the top of my shit-list!

Akelamalu said...

Oh God damn and blast it I just got so mad reading this post! How dare some jumped up little clerk decide your son should not have his disabled parking badge renewed! Never mind appeal you should write to your MP right away and demand that it be renewed, tell the press, the television anyone who will listen,it's an absobloodylute disgrace.

I'm sorry to rant but I had two disabled grandchildren I cannot help but fume against injustices done to disabled people.

On a calmer note, your son is a very handsome young man with a very obvious loving family. I hope his future will be everything you wish for him. x

Jules~ said...

Shrinky, hopefully it helped you a bit to be able to rant and get it all out.
I can tell just by his picture and how you describe him that Sam is a wonderful cherub to have around. You are very right. Autism is something he deals doesn't define his entire being.
I am so sorry that the system is rediculous as it is. So many hoops to jump thru and rolls of red tape. I wish there was a way I could help you stomp feet and make it all better.

pat houseworth said...

Aren't Bureau-Rats Great?

david mcmahon said...

You and Sam are SO special to us.


Hilary said...

Oh my, Shrinky. That's not a rant. It's an articulate expression of frustration. While punching your hand through a wall might be more satisfying momentarily, your "rant" exudes class. Feel free to rant any time. It's acceptable, understandable and hopefully therapeutic.

Mushy said...

I've told you this before, but I'll remind you that God only gives special children to special people. He knows their true hearts and that they will take care of their special wards.

My love and my prayers are with you my dear.

Robin said...

i'm sorry.

Alex L said...

If anyone deserves a soapbox moment its you.

Jay said...

I would like to say it's all down to money, but sadly it's partly down to the politically correct lobby.

Now, what I'm about to say will no doubt be deeply unpopular with some people, but I believe it to be true. Feel free - as someone with real experience in the matter - to set me right, slap me down, or whatever.

Not so very long ago, there were special places for people like your son. Not just autistic, but with varying degrees of disability, both physical and mental. We recognised that many of these people needed different living arrangements to the rest of us and dedicated people to take care of them. We had places which went by various names, the most emotive of which was 'asylum' - but the word simply means a 'safe place' and that's what many mentall ill people need.

Don't worry, I do know your son isn't mentally ill, it's just that he's wired slightly differently to the rest of us. But he clearly will need a special place to live and they're just not there any more.

We still have one or two here in the UK, but to get a place in one is like winning the lottery. One such is Botton Village, where the residents are cared for, but can live as independently as they are able, and go to work and take part in the normal social activities with other residents, while at the same time they're sheltered from the parts of life they can't cope with.

I think we need more places like this, but sadly the current thinking is to integrate ALL people with disabilities into everyday society because everyone MUST be equal. The fact that some people are different, will always be different, and may actually not be able to take care of themselves properly without a sheltered community seems to escape them.

Shrinky said...

berthddu, (laughing) yup, you can say that again..

kit, I am so glad we've tripped over each other in here, the net is an amazing place, isn't it?

Yes riverpoet, the curse of parenthood is that we always pick up the blame for things way beyond our making. The blessing is in the knowledge we know we're doing the best we can. I also had a family member living with a mental illness, I know the heartbreak and the feeling of helplessness it brings. I do so hope your daughter finds the help she needs as you continue to watch over and care for her. x

Ah suldog, you always know how to say the right thing! (Hugs)

Fletch, you are WONDERFUL, thank you so much for putting up this link, you make my day. (Big smile.)

Shrinky said...

akelamalu, you are so funny girl! Yeah, there are times I wish I could do JUST THAT. (smile)

Cheers jules, I DO feel better for having a moan, it does help to vent occasionally. Life goes on and it isn't so bad really. I just wish there weren't so many unnecessary obsticals always blocking the way. It gets frustrating. Shrug.

Pat, you got that one right, my friend!

Aww, just as you are to us, David. x

hilary, I can punch walls too, you know (grinning). Thank you for understanding, sometimes it's good to let off a little steam..

Hey mushy, I'm gonna' have a few words and suggestions for the "Big Man" when my time here is through, just you wait and see if I don't! (Hugs)

Oh robin, it's nobody's fault love, it's just the way it is.

alex, you are such a love (thank you).

Jay, Jay, Jay (I'm jumping up and down and aplauding everything you've said) - YES, you get it! Ironically, long before Sam arrived on the scene, when my father-in-law retired, he became a voluntary worker at Botton Village (he lived just outside Harrogate). I have been there and am very familiar with the place. I also have a bunch of tapes that I took from there to pass on to other parents who have kids like Sam. I know a setting like that would be an ideal place for Sam to live and thrive in. Sadly, living off the mainland as we do, although he would only be an hours flight away from us, the distance from his family would prevent us from spending weekends together and feeling we are able to step in on times when he will need us.

There is a wealthy family on our island who currently have an adult son living in Botton. They are finding the travelling distance problematic, although they do believe he is in the happest place for him to prosper. They have offered our Government land and building costs to create a similair model to Botton over here. Sadly, it is one hurdle after another, and despite on going negotiations over seven years, nothing as of yet has been agreed. I am watching with a wishful eye, hoping by the time Sam is of age, there may be something existing where he can go that is not too far away from me.

Places like these are essential for vulnerable adults to survive and contribute to society. They need a safe and structured envioronment where they can feel valued and worthy.

On the subject of mental illness, the only place open to those who present a danger either to themselves or others is to cram them into an already overfilled prison system. They are given punishment for being ill, and are turfed out at the end of their sentence to usually land up on the street.

There was a lot of improvement needed in the asylums of the past, but closing them down without putting any alternative solutions in place was nothing short of madness. Care in the community? That's virtually non-existent, nothing but a joke.

Mojo said...

My first and last thought as I read this was "That Sam? He's one lucky kid."

'Cause he's got the greatest mom I've met in a really long time.

No way can I fully comprehend the frustration, but I can feel it radiate from every comma here.

So rant on. Rant until you can rant no more. It's no more than the faceless, nameless bureaucrats deserve.

And when you're feeling completely defeated (which I'm sure happens at least once a day) here's a smile and a hug for you to keep in your pocket and use whenever you need it. (Shh... don't tell hubs... he might not understand that it's just a friendly hug.)

You're a beautiful human being Shrinky... I wish I knew you better.

mrsnesbitt said...

i wouldn't call this a rant it is an account of the ridiculous hoops we have to jump through in order to be heard and taken notice of. It sounds a bit like a plate spinning just about manage to have all plates spinning then "the system" throws in another plate!

Hugs to you honeybunch.


mrsnesbitt said...

Me again...Botton Village is only a couple of miles away from us.

Daryl said...

Rant on ... you sure deserve to let it all out .. and let me tell you this .. if I ever meet that dweeb who didnt approve the parking pass I will rip him a new one ... lets hope that 'what goes around, comes around' really works ...

As for the social services .. they are just as bad here in NYC ....
not that THAT makes your's and Sam's situation any easier ...

I dont know how women who are not as strong as you cope ...

I often stop by to read and dont take the time to comment ... but I am BIG fan .. and this rant really sums up why ... you are an amazing person and mother ....


Jay said...

Thank goodness for that! LOL!

It's an opinion I've formed over the years, just from what I've read and from having friends with children who have Down's Syndrome or autism or some other difficulty, but not having a child with serious problems in our own family. I know things look different from different perspectives.

I wonder if it might be worth contacting the Camphill Village Trust about the situation on the island? Could they perhaps work with your government on this? Maybe then there would be a community for Sam to join when he's older. One can only hope.

Shrinky said...

Oh mojo, you've brought a lump to my throat (a happy one), thank you my friend!

Shrinky said...

Denise, yes, funny I didn't link Botton to near where you are, it is, of course it is! Smile.

I like that analogy - spinning plates. Yes, it is a bit like that sometimes. Smile.

Daryl, you are my kinda' sassy woman - you give it to 'em hon, and don't spare the punches either! x

Sadly jay, I am way ahead of you there. The Camphill Trust's headquarters are outside of the UK (I forget now where, it is in somewhere like Sweden I think). Years ago I set out on a mission to convince them to look at the Isle of Man. Numerous emails and letters went unanswered. I then moved on and tried contacting any powers that be at Botton, who were very apologetic and sympathetic, but who in the end could only forward my correspondence on to their HQ again.

It is not a perfect world in which we live, but you do make a very valid and consturctive suggestion here. Anyway, I still haven't given up - watch this space (wink).

Anonymous said...

How can one not rant at the myriad 'job's worths' whose small powers make them Napoleons. How they strut and pose and suck air through their teeth and care only for 'the rules.' You are wonder woman and Sam is a marvel.

Anonymous said...

(Big Hugs)

SJ said...

I would give you big hugs like chewy but your husband might object :)

My sister is mentally ill too and it does affect the lifestyle. Since one parent had to stay with her all the time we rarely had times when the entire family could go out and that's just one example.

Wishing you and Sam my best.

The Future Was Yesterday said...

I came here a dozen times, meaning to leave you a comment. Trouble was, I couldn't find anything to say that didn't sound like it came from a complete idiot.

To be truthful, I don't know what to say now. Your courage, your relentless fight against the system, and most of all, your undying love and dedication to and for Sam, is inspirational beyond words.

I am in the presence of a great human being, displaying the greatest of human talents, in the face of the worst of human behavior, and not giving up.

You are a lesson book for all of Humanity to learn from!

Shrinky said...

Hey moannie, you're swelling my head! (Grin) How lovely to see you in here, and thank you for the encouraging words..

Hugs back to you too, my BFF. X

SJ, yes bonny lad, siblings do experience a severe knock on effect of having someone like Sam in their family. For what it is worth, I do believe they grow to be a far more caring and compassionate person because of this. x

Shrinky said...

Darn it Dan, you've gone and reduced me to tears! (Swat) But you are mistaken hon, I am no different from thousands of other parents just jumping through the hoops.. we're not given any other options!

Granny said...

Rant away. I've seen first hand what the bureaucracy can do.

Scott from Oregon said...

Sam's gonna end up making you live longer, you'll see...

imbeingheldhostage said...

Sometimes a good rant is like an elixir.
This is the best place for it too-- you get it all out and then walk into the other room and love your family.
I'm with suldog-- even when you rant, it's done with grace.

Shrinky said...

Hey Granny, with all the experience you have with bureaucracy, I should have given you a call - you would have sorted everything out in no time! x

Yeah Scott, you may well have a valid point there.

imbeingheldahostage, aww, you saw the nicest of things (big cheesy grin across my face) - and you are right, this place is the best of platforms for a good, safe rant, huh?

B.T.Bear (esq.) said...

Oh boy.

Mummy knows that kind ov frustrayshun, a bit. She is ment to see a trik-cyclist evry 3 munths cos ov the bi-polar-bear. But so far this yeer she hassent seen eny cos they keep sendin appoyntments to her that ar at the rong hopsikol. Finally she haz wun for this week or next- I carnt remember but it's on the calender.

BUT! She sez, it duzzent matter enyway, cos she always sees a difrent person. She haz had mental helth problems since she waz 13 an now sheez 40 but she carnt get to see sumwun abowt it properly. She seez a diffrent person eech time, eech wun a student doctor. She haz to say the sayme stuff evry time, like, how menny bruthers an sisters do yu hav an how waz yor childhood? An it ownly larsts half an hour, so nuthin mutch gets dun, then that's it for 3 mor munths, then she sees sumwun new agen an starts agen.

It suks. I think sumwun shud help her proply. That's wat theyer payd to do issent it? But insted its left mostly to us Bears, an Daddy.

Yu an my Mummy both need peepol hoo want to carfter proply an see sumwun over yeers an yeers an see that they ar helpt. Not peepol hoo fill in forms an then moov on.

It is very frustraytin. I hope yu hav Bears to help an mayke yu tea. I mayke Mummy tea. She always sez that helps.

BAd luk abowt the parkin tikkit. We yewzly leev Dilly in the car. If enywun coms too close she snarls at them an they bak away. It werks wunders.

Sumtimes we com bak to the car park an all the uther cars hav gon an just ours is thare. Dilly sez that theevs took the rest but they wuddent dare tutch ours wiv Dilly in it.

Nose hugs!


Shrinky said...

Bob, I know your mummy, she is the fiercest, bravest dragon in the whole wide world.. unlike Dilly, your mummy keeps the fire deep down in her belly, and saves it in there for when things get really tough. When the hurricane is really raging about her (and after a few fortifying cups of tea from you and greyum), she opens her mouth up wide, wide, wider.. then after breathing deeeeeeeeeeeeply in, she takes up that fire and throws it all back out again, all that blinding white heat, 'cos she's a demon-scorcher, and she knows just how to see them off with thieir tails burnt, blistered and on fire. It's what she does (again and again), your mummy.


Easybreathingfella said...

The world needs more people like you to jump up and down on their soap boxes.
I like you, really get p****d off with the under graduate do gooders within the social services. They say how it must be, but have no concept of how life really is.

Unlike you, I rant for in the main my own situation and the way disabilities are treated within our system.

Where as you fight for Sam's needs whilst you cope with the knock on effect that impacts on the whole family unit.

You have my greatest respect Carol. God bless.

Rachelle said...

Dear Shrinky,
Been there, been to court with my baby brother when they cut his Social Security benefits.
Was there when they wanted to institutionalize him (and we're talking state institution here, read "big-bad-ugly" in the US) and said he wasn't going to be able to do anything in life.
Was there when he won his case and the judge said shame on the system.
Saw him graduate High School.
Saw him get a degree in welding, get a truck drivers liscence, and manage a pizza place.

What do they know, eh?

Here's hoping someone finally *sees* Sam- and does the right thing by him.

You keep on loving him, and know that you are a phenomenal women of great courage and love.
A shining beacon for me my friend!

Shrinky said...

Keith and Rachelle, funny you should both come in here at the same time as each other. Both of you have had years of frustration battling through "the system", you know first hand what a fight it can be. It's never stopped either one of you from still trying though, has it?

Thanks for your kind words, but all I can say is it takes one to know one, huh? Smile.

San said...

I'm so glad you ranted, Shrinky. Your rant is beautifully written, it came straight from your heart and emerged perfectly. Sam is perfect too, in a more profound way than most of us.

Your love for him is profound. My heart goes out to you, and my anger at the little clerks of this world who haven't a clue of the way they alter people's lives by checking a certain way on a form. Or maybe they do. Maybe that's the only power they have.

You, on the other hand, are wielding tremendous power in raising your beautiful children, all of them, with boundless love.

Carol said...

He is a beautiful beautiful child....and so are you! I'm glad you 'ranted'!! I learn so much from you every time I read your blog. Thank you.

Catmoves said...

Jay seems to have a grasp of the terrible realities all of us (the handicapped, anyway) must tolerate from well meaning (but half cocked idjots) when we'd really just like to up and slap 'em silly.
What we are asking for is a bit of thought on the part of the civil servants. We're getting very tired of asking "what were you thinking of?" Just please pay attention to what I am saying to you. Extrapolate and then answer our enquiries. The frustration, Dear Shrinky, lies with the non-existent training not the person.
(I'm all for you whacking a few of them least verbally.)
And "rant" does not fit your thoughtful and wise remarks.
Remember "I have not yet begun to fight."

Shrinky said...

catmoves, I can hear the ring of endless experience echoing through your wise comment. You are right of course, there is far too little training and even less funding available to provide what should be the informed and effective departments that their hapless "clients" are sadly forced to navigate through.

It's lovely to hear from you again, my friend. (Grin)

*Goddess* said...

My sister had Downs and I saw what my mother went through on her behalf. I'm grateful that she was in my life, though, because she taught me never to judge a book by it's cover and to have compassion for what others are going through. Invaluable lessons and I'm sure Sam has taught you quite a few, too:)

Shrinky said...

Hey Goddess, it's been far, far too long girl (hugs), welcome back!

And yes, my God has Sam taught me much, he teaches me more by the year. x

CJ said...

Thank you very sharing your story with us. I didn't think of this as a rant at all, more an expression of frustration at all the redtape you encounter along the way to provide Sam with the best life possible. He is beautiful gift whom the universe entrusted with your care. I can see why.

Merisi said...

You had every right to runt!
I read each and every word of it.
Government employees, paid for with our taxes, should be subjected to defend their decisions when they are as random as that clerk's who "decided" you'd need no more special parking permit for your son. I hope that new social worker actually follows up with whatever she's supposed to do.
I hug you for being such a brave and strong and loving mother,
may you always have someone to lean onto!

Shrinky said...

Merisi, thanks for putting a big wide smile on my face, if the world had more merisi's running it, it would be a far better place! x

Maalie said...

This post humbles me. I cannot imagine how I might have coped under similar circumstances.

i beati said...

all too true

Fletch said...

I came back to read this post again because of something that happened today.

I took the dog for his usual walk on the 'common', casually noting that there were several teams of gardners pruning, raking and generally tidying up before the man on the large motor-mower could do his bit.

It was only when I neared one of the groups that I realised that, although they were all youngsters, they weren't horsing-around like teenagers normally do. In fact they were totally focussed on their individual tasks, and only occasionally lifted their heads to ask advice from an obvious adult supervisor.

To shorten this comment - they were all kids from local homes who were living with Autism, Asperger's, Down's and other chromosone deficiency related problems, all physically healthy, but in dire need of 'occupational therapy'.

Chatting with the supervisor I learnt that here in Portugal the state takes on the responsibility, and with qualified adults in charge, they take them out to do this sort of physical work, tiring but not brutally so, amongst their peers with whom they have already formed a bond. And they pay them too - not a lot, but it is considered a way for them to 'earn their keep'.

I am beginning to like this country a lot!

Shrinky said...

Maalie, hugs to you my friend.

Sadly so, Sandy. Sigh.

Fletch, thank you so much for coming in to tell me this, it is enough to give us all some hope, eh? It makes perfect common sense, such a practical, simple solution that works well for everyone. The kids are kept active, stimulated and solcialised whilst being given a routine (something vital to most of these kids) - and the health benefits are great, our kids mostly don't participate in sports and can tend to gain weight more than most others. They are also gaining a lot of self worth by being seen to be doing a valued job that pays a fair (however low) salary. The community also gains not only from the jobs they are doing, but by taking these guys away from some of the benefits they would otherwise be forced to claim, and by the decreased future pressure they might otherwise place on the healthcare system due to years of foced inactivity.

Yes, I think I like your adopted country too! Perhaps the UK might take a few lessons here..?

Jorgo said...


"I stifle the reflexive urge to throttle her" made me laugh.

"informed us he would die long before adulthood (pregnant at the time, it didn't help to also be informed this condition being genetic" caused me pain.

"lives with" autism" made me positively reflect.

The whole post touched me deeply.

Thankyou for it.