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Thursday, October 6, 2011

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?

61 comments:

Ms. A said...

Perhaps you should! Maybe then Sam could find someone capable of sorting through the BS.

Not sure who did the sketch, but it's great!!!

Brenda said...

I thought you owned a temporary employment agency and worked there. No? Well, then of course you should apply to work with any agency that could help to make Sam happy. Think carefully also about gardening and landscaping ideas.

mrsnesbitt said...

Tossers! All bloody tossers! Tell Sam - T-shirts will be posted Monday as I have not had any transport due to me pick up being fixed hun xxxx

Who did the sketch? SO real!

Tabor said...

I cannot recommend applying for the position in the heat of the moment. It is so amazing that people are treated thus. Bureaucracies are horrible because while people work in them they are forced to follow very strict processes.

mythopolis said...

Well, I say, why not? I think it is poor practice of the center to suggest a two day program, then change it to a one day program, and then say maybe there's no money, or whatever. They should have an understanding of the importance of structure and schedule to the population they are serving. It would have been more honest and appropriate to say from the beginning, we are hoping to get him placed in the program but it may take awhile to guarantee that this is possible. So, Sam gets let down by having an exciting possibility pulled like a rug from beneath him. Its cool he is working some at the garden center and that he seems to like that.

Portia said...

How awful that these government agencies are hurting the people that they are paid to help protect. Poor Sam. The only thing you can do is be honest with him but I am sure it's not easy being the messenger of the bad news!

JeannetteLS said...

How sad to see that it's the same on both sides of the Atlantic. I'd say think carefully about applying for any position where you would also be working with your son for a) boundary issues--do you feel you could separate your heart JUST enough to make necessary decisions for all b) having the experiences you have had in your life, would it be too much for YOU and thereby possibly NOT work well for Sam?

On the other hand, perhaps it's a calling in disguise for you. But I am with the person who said that you might stop and think hard about applying for a position.

The promises others make to parents/guardians of extraordinary young people, when they cannot back them up... and the ones who suffer are the people who are supposed to be served.

I hope Sam gets what he DESERVES soon, and that you do what serves YOU as well. HOpe I made sense.

Ami said...

Oh GRRRR. When so much money is pissed away on stupid shit that helps NO one.

Grrr.

And i hate wind, too.

Anna said...

Shrinky, that's sucks. Sam sounds so so sweet. I love when you write stories about him. I don't know how much you have on your plate, you always seem so busy, but I would apply. I sometimes see with my Matthew when we don't go anywhere, he is so bored and gets sleepy. Activities are healthy. Thanks for sharing your story, I always enjoy here when I come back (after long time absence, hope you forgive). Anna :)

X. Dell said...

(1) If you snored, wouldn't you be the last person to know what that sounds like? Isn't that kinda like trying to look at the back of your elbow without a mirror?

(2) Forgive me for coming in this late, because you've probably mentioned this in an earlier post. I wondered why Sam would need a social worker until I read someone diagnosed him with an ASD. From prior descriptions of him, he seems to function on a very high level. Am I misreading this?

Barbara Shallue said...

Oh, gosh, I sympathize! I moderate a nonprofit website geared toward adults on the spectrum (Jobs4Autism.com) and I've heard all kinds of stories along these same lines. I'm sure you'll do what you need to do for Sam, whether it's working there yourself or lighting a fire somewhere! Good luck and keep us posted!

Anthony Duce said...

Like the sketch and appreciate the story with the wind. The program if it ever gets organized sounds wonderful. I hope with or without you taking over, that everything works out..

Debra said...

Shrinky, can a donation be made to the centre from some anonymous angel to secure that there is money in the pot to take Sam on?(ie. me) I would be more than happy to support this organization if they would be willing to give Sam a spot in the program.

And as a concerned mom, I say that if your applying for this job will somehow insure that Sam will get in, then I would support your decision to do that. As mothers, we do what we have to do in order to make sure that our children get what they need. Good for you for being THAT kind of mom:)

Hugs,
Deb

Rock Chef said...

You should! You have everything that is needed for the job - first hand experience of the problems that those who will be attending have to live with, managerial experience and, not least, the kick-ass attitude that actually gets things done!

Fen said...

ugh so very frustrating. I know the feeling though, sometimes I feel like banging my head against a wall when I'm trying to organise things for my clients. So much red tape, so many hurdles to battle. I have all available body parts crossed for you.

Shrinky said...

Ah Ms. A. if only if it were so simple, eh? Still, I am tempted!

Shrinky said...

Hi Brenda, a lifetime ago I was sole proprietor of a group of (permanent and temporary placement) specialist recruitment agencies, whuich at their peak payrolled 500 staff. I started my first one before I married and started a family, and continued to work full-time up until Sam (my second born) was almost 3. I then tried to oversee everything from home on a part-time basis (disasterous!). I finally quit working altogether and virtually gave the business away, to focus where I was needed. Sam in particular, as well as my other kids needed their mum, not nannies - by then my priorities had had to dramatically change.

The garden centre Sam attends is closed to the general public and is specifically run for adults with special needs - sadly, I doubt Sam would be employable out in the real world, but he does enjoy where he is at, and also helps his dad out and around the garden, too.

Shrinky said...

Oh Denise, you been having car trouble? Poo, how annoying! Glad to hear you're mobile again - and thanks, I'll tell him, he'll be chuffed!

Shrinky said...

I know Tabor, I can't leap into a job on the spur of the moment, even if they would have me - I am Sam's means of transport, plus he can never be left alone, unsupervised. Whatever salary I might earn would mostly be needed to fund a carer for him..

Shrinky said...

Hi Dan, well in fairness the centre did say he had a place subject to funding - but the funding comes from the social services department, and as his social worker had already assessed and approved him for a place, I assumed this funding came automatically - why wouldn't I?

The irony is, the people on the ground who actually deal with Sam, they DO have his best interests at heart - it is often a thankless, no-win situation for them, I know their client-load is heavy and the limited resources available are spread pitifully thin. I believe Sam's social worker is as upset as I, to have his word broken in this way (those were his exact words when we last spoke). He had no idea this would be blocked, and is as frustrated and angry as I am.

Shrinky said...

No Portia, Sam has no concept of money or the politics involved. All he knows is I promised he could "work" at this wonderful place, and that now I won't let him. I haven't told him he not be given even one day there now - I'm not done yet, I am sure there is a way, I just need to find it.

Shrinky said...

You made perfect sense, Jeannette, I wouldn't want to run any workshops with my son in it, it crosses too many boundaries, and I'm sure it would be very confusing for him, too. The post advertised is more office and meeting bound, liasing with social services, parents, the media, local business, and trying to keep a high profile in the public eye for the centre to be given full public support for what it is aiming to achieve. (Ahem, I assume, that is.. could be wrong!)

Franky, I am neither qualified nor experienced in this field, and have been out of the work place for far too long, to flatter myself I'd ever be considered for the position.

Besides, who would look after Sam?

Shrinky said...

Hi Ami, oh don't even get me STARTED on that one (eyes skywards) - that's a whole 'nother post..!

Shrinky said...

Oh Anna, it's always a pure delight to read your comments, thank you sweet lady, and I am so pleased to see you're blogging again! Yes, activities are essential to mental health, Sam is a teenager, full of restless energy needing an outlet!

Shrinky said...

Hi X-Dell,

1.

(a) For your information, being incrediblly double-jointed, I have never had need of a mirror to look at the back of my elbow, In actual fact I gaze there (unaided) quite regularly.

(b) It's impossible I snore, hubby keeps me awake all night.

2. I'm glad you asked this, because it offers an opportunity to explain Sam better to those who don't know him. Yes, luckily Sam is highly-functioning in many respects. His actual correct diagnosis was finally pronounced at age 7 (he had many prior mis-diagnoses) He has autism, coupled with severe learning difficulties, low muscle tone and dyspraxia.

In many ways he has the comprehention level of an 8yr old, but with the added quirks his autism brings - obsessions, compultions, rigid routines, irrational fears, over-sensitivity to noise, light, etc. His fine motor skills are poor, and he avoids difficult tasks such as art projects, or ball-sports, because his feet and fingers are "clumsy".

With care,Sam CAN and does copy words out unaided, but he is functionally illiterate, he is also unable to read the time on a clock, and has no concept at all of coinage, or of the value of money. He never leaves the house unsupported, being far too vulnerable to travel alone, he experiences panic attacks and the triggers to these are unpredictable - when he does have one, he curls into a fetal position, freezing until it passes.

He enjoys hill walking and gardening with his dad, or spectating at football matches, he is a huge fan of our local radio station, and loves watching the bikes fly by on race days - he has an extraordinary memory for whatever interests him, virtually encyclopediac! Sadly, due to his limitations, his interests are understandably few, he doesn't watch television or movies, can't read books or magazines, or enjoy any hobbies such as painting or drawing. Sam loves to talk, but a good deal of his time is spent talking "at" people, rather thasn as "to" them, and his conversation is often repetitive and rigid to the topic he is focused on.

I resisted having a social worker on board for Sam for many years. I felt the stigma social workers are only associated with abused or at risk, vulnerable youngsters, and didn't want to be judged as "not coping". It took me a long time to realise the key to accessing the services Sam badly needs, can only be gained by him having direct referals from an appointed worker within the social services structure.

Kate said...

Government bean counters...what are they good for? I fear more and more of this kind of BS with money being scarce and upcoming austerity measures. Too bad poor Sam has to suffer.
Love the sketch! Love to Sam. xoxoxo

Mike said...

I agree with Debra. We have a local Non-profit organization here in Norfolk,(Virginia) that employs people like Sam in all manner of jobs, from Gardening to Auto repair, shredding services and laundry. If such an entity does not exist near your location, why not consider starting one, Yes a lot of work and headache but you have the skills and the right attitude. However, this doesn't solve the immediate problem of getting Sam enrolled now.

YELLOWDOG GRANNY said...

love the sketch

wishihadakarmaanghia said...

Rushing but wanted to pop in and send you some love. Let's catch up v soon. We can have a mutual swear-off at the tittedness of the whole stupid system (that was the polite version of the original word I made up!!) Big love xxxx

A Heron's View said...

Contact your MP

Leslie: said...

Sorry to hear of the recent problems, but my take is do NOT work there - you need to be working from the outside in - and as you mention, who would be there for Sam? It's a fine line working where your child (no matter what age) is working or learning. I taught my younger daughter French when I was teaching up north one year (wilderness) and it was at times awkward. Hang in there - I do believe something will come up for Sam and he'll be happy about it.

lisleman said...

I really don't have anything to add but I did appreciate you sharing this. Our youngest daughter has had some training in this area and has volunteered at a school for autism. I learn a little bit from her at times.
All the best to you and the whole family.

Shrinky said...

Hi there Barbara, well good on you, I always knew you were one of life's good ones! I've never heard of any site like that before, what a fabulous concept - I think I'll go have a look at it, who knows? Maybe this idea will catch on, and other sites (maybe over here) will follow? Thanks for the link!

Shrinky said...

Thanks Anthony (smile), I'm sure it will eventually. That's NOT a sketch in the conventional term - I took it from two photographs which I merged and played about with in Photo-Shop, I have such fun in there!

Shrinky said...

Oh my goodness Debra, it's folk like you who restore my faith in human nature, I am completely blown away at the kindness of your offer, and thank you from the bottom of my heart. BUT, I don't think it would work in practise - the centre is government backed, the funding has to come directly from there. I think the next step for Sam is for me to lobby my local politician. Watch this space! (I am stunned at your kindness, it has completely lifted me up knowing there are people like you out there) x

Shrinky said...

Aww, thanks RC, you ever thought of working as a motivational speaker? I think you'd do great in that role! (hugs)

Shrinky said...

Cheers Fen, you know that's the saddest thing about all of this, folk like you who work on the front line, enter your profession hoping to make a difference, you care and work hard to improve life for your clients - but the tools you need are rarely in place. I guess most lose thier idealism and feel pretty disallusioned once they are working in the system for any length of time.

Shrinky said...

Hi Kate, thanks for that. Yeah, sadly, when cuts are made, it is always the weakest and the most vulnerable in society who suffer first.

Shrinky said...

Hi Mike, aww, you are SUCH a sweetie, I am so glad to know there are people out there who really do care, and are prepared to do something about it. There was a similar type of scheme operating here, where local businesses offered unpaid "work placements" to folk like Sam, but in recent years, with so many young people unemployed, these slots have been taken by able bodied kids who are desperate to gain any kind of experience that might give them a foot in the employment market.

Shrinky said...

Cheers, Jackie, tho' I didn't "draw" it, I created it from photographs that I ran through Photo-Shop - I love that programme!

Shrinky said...

Hey there Kristina, how you doing girl? Ahhh, yup, it's been too long - you about on Monday? Let's catch up, eh? xx

Shrinky said...

Hi Leslie, hmmmn, you have personal experience of this, and speak as one who knows, eh? Thanks for the advice, I think you are right - I confess I have gone so far as to send off for the application forms.. but I haven't completed them yet. I'm torn - in truth I feel passionate about this centre and would LOVE to raise it's profile and lobby for support, it would be my dream job! That said, it's unlikely I'd be offered an interview, never mind the position even if I did apply. Besides, yes, who would look after Sam?

Shrinky said...

Thinking about it, Lisleman, I am not in the least bit surprised your daughter has opted to volunteer in this field - raised by you, she obviously has been given sound values and the compassion to want to help make a difference in this world!

Furtheron said...

why not? You'd be on the inside working to help

mythopolis said...

Glad you clarified about the staff at the centre...as usual, it comes down to the politics of the larger system and the priorities among those who hold the purse strings. Here, education in general, and a great variety of human services struggle because of the enormous amount of money allotted to such things as maintaining the war machine!! Grrrr...

ellen abbott said...

So sorry. They shouldn't make promises they can't or won't keep. Not you of course as you simply relayed their promises. I hope the best for your Sam.

Shrinky said...

Ah, Furtheron, I probably would wreak more damage than good..

Shrinky said...

I know Dan, funny how our Governments can always come up with limitless funds for the killing of folk, yet are perpetually strapped for cash when it comes to enhancing the life of their citizens, eh?

Shrinky said...

Thanks ellen, we've been here before, and will be again - there is always an alternative way to achieve a result, I just need to find it. I will (count on it)..

TechnoBabe said...

Having lived with the ups and downs and disappointments with the system yourself, you would make the perfect manager for the center. If you got the job, you could add an addendum to you contract that Sam would be at the center 3 days a week.

Shrinky said...

All I'd need is a magic wand, eh? Thanks TechnoBabe, but you have far more faith in me than I do.

Anonymous said...

If Sam talks, as the conversation you typed, he has the mind of a poet. The wind is alive! Such interesting conversations...although, perhaps frustrating at times.

I read with joy that he loves the garden centre job. I totally understand, as he helps his Dad with your gardens and greenhouses.

You, yourself, can only do so much to keep him busy at home. I hope "they" get moving and find those 2 days for him.

- Chewy

Hilary said...

I'm sorry you and Sweet Sam are going through this, Shrinky. I hope there's some resolve semi soon. I wonder if there's anything like a group setting that you could organize for others in your predicament? Kind of like the Moms and Tots scenario we used to do when our kids were young. You may have to attend with him (and have other parents attend when you host) but it might be the best opportunity to come along for these kids in need, if it doesn';t defeat the purpose of having the time apart. Just a thought.

Hilary said...

Oh, and who did that sketch of Sweet Sam and you?.. the likeness is incredilbe. Or might that be a photoshop rendition of a true photo?

Debra said...

Shrinky, the offer will stand even though I know what you mean about the gov't red tape and all. It would be my pleasure to be able to help if that would be at all possible. I wish you lots and lots of luck in your efforts. Go show them what a determined mother bear is capable of!!!

Big hugs,
Debbie

Grayquill said...

Sounds horrible. I am sorry!
Wishing Sam the best! GQ

Shrinky said...

Hey Chewy, what's up, you forgotten your password or something (grin)? Yeah, although Sam was serious, I had to stifle a smile at our conversation - he sees things in his own unique way. I've just heard he may be offered something for a Friday, not at the unit, but at a charity shop that sells things on-line..

Shrinky said...

Dearest Debbie, I have no doubts of your sincerity, and I can't tell you how much that means to me, but in truth this is more a political than financial problem. As a new service, the government needs to be convinced to allocate a working budget from it's social services fund. Pressure needs to be brought to bear upon our politicians to ensure this is done. I'll start the ball in motion by contacting my local representative.. keep your fingers crossed! And thank you, dear lady, for your wonderful offer of support. (x)

Shrinky said...

Hi Hilary, that's an idea I haven't ruled out, though the logistics are horribly complicated.. thanks for the encouraging words, it's great to know how much support there is out here for Sam and his friends (smile).

No, it's not a sketch, but as you guessed, a Photo-Shop rendition of two merged photographs - I have such fun playing about in there!

Pat Tillett said...

I had a younger brother with some special needs. My wench of a mother simply gave him up. She didn't even try at all. You are quite a woman and mother to stay on his journey with him. I admire you for that...

Parabolic Muse said...

Oh, wow. This is really heart-wrenching. I'm sorry for all these ups and downs. Do you want to do that? I bet you'd be fantastic at it.