Wednesday, January 26, 2011

The Good News and The Bad News

So the good news is, I'm told, having finally tracked down a temporary stand in special needs social worker, one necessary to help Sweet Sam's transition over from the "care" (a term I use loosely and laughingly) of child services, through in to the provision of adult services (when he turns 18 this year), that he is eligible to claim an incapacity benefit of £70 per week.

The bad news is,  Sweet Sam has been eligible for this payment ever since turning 16 - except NO ONE  thought fit to tell us.

Yes, I am as mad as hell.  Know why?  On his 16th birthday all of his transport services were completely withdrawn.  Unlike most 16yr olds, Sam needs escorting to and from wherever he needs to be (his various social clubs and to his part-time college placement)  requiring a responsible adult with him at all times.  He's far too vulnerable to hop on public transport, be trusted to cross a road, or to be left unattended even inside, never mind outside of the home.

Couple that with a dad who works most of his time based off the island, and with two younger siblings whom (quite rightly) also require ferrying around to their various after school activities, I have been repeatedly asking and asking for some form of assistance to help me with Sweet Sam's frequent transport needs.  Each and every time I've been told the buck rests firmly in my corner now, and I must drive him everywhere.

Without the input of my conscious effort, my son would be unable to attend his life-skills course at college, or to even have any semblance of a social life outside of the home.  The very same agency who has repeatedly (and with sincere regret) assured me there is no help with transport available to us, has also been sitting on this little (costly £70 per week) nugget of information for almost two freakin' years now.

Great news, yes, don't get me wrong, I am overjoyed at this discovery - but WTF??  Why, why, why wasn't this information given to me as a solution to funding Sam's transport needs at the very outset?  I can hire the regular help of a friendly cab driver with this cash.  Du-uh.

Arghhhhhhhhhhh.  Sometimes I honestly feel like pulling my hair out at the roots, at the incompetence and lack of care my lad receives from the very agencies meant to be set up to "aid" him through life.


I know I have been very remiss on posting as of late, but with the new year, a few distractions have also rolled in.  My usually sunny lad appears to be encountering a spot of bullying at college, something he has never encountered before, and his emotions are all over the place.  Appears he is not, as is required in his care plan, always supervised by an adult, especially over the lunch break in the canteen. Yes, of course I have been down there - several times, and after today (which I am too upset over to even begin to go into), I intend upon setting up another meeting to try to resolve this.  To date, I am very disappointed at the dismissive attitudes I've met.

Hey-ho, sorry to be such a Debbie-Downer.  Those who know me also know my posts are usually far more up-beat (which is why, having lost all sight of my sense of humour as of late, I've wisely ceased blogging for a bit).

I could rant and rant about at least a dozen other things concerning Sam's (un)welfare, like as to how next year there are plans to offer him training at a workshop for the disabled, involving one, or if we are very, very lucky, perhaps two days a week.  It will teach him to make wooden limbs for third world countries, or how to recycle aluminium (depending upon his abilities) .  The irony is, once the year is up, he will not be offered any employment there.  There are not many workshops making wooden limbs for third world countries on the island, in fact, as far as I am aware, this is the only one in the entire UK, ditto for any recycling aluminium plant on the island.  Any training he gets is completely redundant before he even embarks on it, since he'll never be given the opportunity to ever use it.

When he turns 18, all his present social clubs will bar him from membership, as it falls under "child services", and as he will soon be classified an adult, they will no longer be open to him.  Scrambling as I am to find any alternative outlets, none appear to exist (I'm still digging, I know there has to be something out there).

I'll pass on listing the rest of my gripes, for fear of losing what's left of my readership.. just take it suffice to say, I am not a very happy bunny at the moment.

Okay, enough of this lousy excuse for a post, I have bucket of wine in the fridge a-calling me.  Back soon, but with FAR more cheer, this I promise!


Chantel said...

Sometimes, my love, life chucks eggs at your head. We dodge, we shield, and then....we sneeze. Smack. *sigh* Damn eggs. xox

Leslie: said...

I can imagine your frustration and angst over all this. Currently, I'm tutoring a young lad who is behind a grade, but really should be 2 or 3 grades behind. I truly believe he has multiple problems, his low IQ the least of his worries, but the parents can't/won't accept that their little darling needs more than just homework support. I worry about when he goes to high school and will become a target of bullying. But my hands are tied as well as his everyday teachers because of the government support that is lacking along with his parents not accepting his limitations. *SIGH* Here's to you and all others in similar circumstances! (raising glass)

Jinksy said...

It's good to let it all out - no need to apologise to Blogland! Good luck with finding the best solution for you all...

Portia said...

Ranting is perfectly acceptable behavior in a blog. You need to let off steam and we're here to listen and offer support!

It seems you did not ask the correct questions of your government agency. You see, they cannot connect the dots from a. they need transportation which requires money to b. Oh look, here's some money they can have!

I sure hope everything gets better for you and yours.

Robyn said...

I'm pleased that you have taken the opportunity to use your blog as a vehicle to have a little rant.
I say little as I think you have been very restrained and polite.

I can completely understand the frustration that you must be experiencing and the sadness that goes with it.

I sincerely hope that you will be back paid for the error... and will get to enjoy a nice lump sum.

Take care and thanks for being a loving Mother to your children.
People like yourself make for a better community and life in general.
Best wishes for better weeks ahead.

Anonymous said...

Oh, Shrinky, you've posted. A real proper rant it is. It's all a game "they" play to drive you nuts. With Matt off to uni, you might consider decorating his room with soft white padding and sound proof walls.

Pat Tillett said...

I'm really sorry to hear that! It SUCKS! It's your blog, you can say and do whatever you want here... It sounds to me that you have a valid reason to feel as you do.
rant away! we aren't going anywhere!

secret agent woman said...

You've good reason to rant. How incredibly frustrating!

Kate said...

Rant on, Shrinky. Sounds like you've got good reason. Lift a glass for me, will ya?

Hilary said...

Ugh.. I can sure feel your frustration over this. Perhaps there is a way to get the two lost years of funding retroactively since you were entitled to it. It might be something you can look into and acquire. Go in fighting!

I'm so sorry to hear that Sweet Sam is having trouble with bullies. There seems to be a universal cruelty among some kids and it's so disheartening. I hope this resolves very soon.

Pour me a glass, please. We'll drink to an end to your woes.

Lori said...

Are you kidding me??? Of course you should rant about these things....this is your place..and not one of your readers expect you to me merry sunshine all of the time...actually I would find it odd for you to be merry sunshine in the middle of all this.

You are fighting for your sweet Sam and he deserves all the opportunities available. No one should step in front of us mother bears, that will do whatever it takes to protect our loved ones and to advocate for them. You have to fight for him because his life and future depend on it.

This is an area I feel passionate about because I have a special needs brother. I have worked in the field with special needs non verbal children, respite children and very high functioning young adults and so I know your fight all too well. All the forms, all the red tape and all buracracy are all hoops people must jump through to get help. Sad. Especially when people like Sam are waiting to move on with their lives.

Good for Sam that he has you to fight for him. I pray that doors will open where doors are closing. Enjoy the wine and take care of yourself in all of this because if your no good, you will be no good to those who need you. XX

Grayquill said...

Hmmm...Really? We gotta always be happy? Are we all really that unwilling to see hard tough emotion? Sadly you are probably right.
As you know I am still new to your blog and I have not heard much of your struggle. It certainly is at a minimum, profound. I don't have any magic - sorry. But I do believe we grow into our challenges. I hope you will hang onto hope, and use that anger to fuel you forward.

Rock Chef said...

Had similar things with our daughter, especially once she was taken ill. Aged 17 no one seemed to know who was supposed to be dealing with her! We are still paying off the debts that we accumulated at that time.

Go and kick some ass at the college - zero tolerance of bullying of any sort!

Hope you find something good for Sam to do. Just something to give him some sort of routine would be good.

Glad to see you posting, even if it is to complain. Hey, no one can be happy and funny all of the time!

Kristina Hughes said...

Hey Debbie-Downer! It's always lovely to read your posts and anyone who is always jolly and fa la le la is either on drugs (that I'd like to know the name of!) or Timmy Mallett! Life is full of ups and downs and it IS your blog and you can rant if you want to (80's song?!)

Blimey, though - you sound like you're having a tough old time. Poor Sam. Poor you. No wonder you are cross. I think the answer is cloning - a little army of Super-Shrinkies? Sigh. It shouldn't be this way. It terrifies me that these agencies are run by morons.

I hope you put something into place for Sam - poor chap. If anyone can, you can Mrs. Keep blogging too - rant or rave - I love hearing from you. xxxxx

Fen said...

seems these damn bureaucrats are the same usless breed all the world round huh. Big cuddles to you m'lady xo

mythopolis said...

My heart goes out to you. Social assistance and federal aid problems are hurting many people here in the states with inadequate staffing, funding, etc. The whole educational system here is in great disarray for that matter, and special needs go unmet. Good luck to you in trying to plow through the bureaucracy of it all.

Akelamalu said...

It just makes you want to scream!

Great news that Sam can get the £70 per week. Can't you get it backdated? They're quick enough to claim it back when they've paid you too much.


how insane..teach him a job he can't find..sigh*
I hope that you get the money from the day he was able to get it..

ED BULEY said...

SWEET SAM is cool and he has a terrific handle (Hobo Name). We're vibing all of you now. Talk to Jesus about this challenge. I don't know why but it works. Until then, be thankful for unanswered prayers, they work great too. SWEET SAM rocks! Here's hope... from a HOBO for you all. It's going to be fine but a pain nontheless, That's life and we're all HOBOS while we're in it, not just SWEET SAM. Switch the last two letters in the word "BELIEF" around. What did you get? That's right. Now, you just got some help.

Skunkfeathers said...

Sounds like I'm not the only one starting 2011 with obstacles.

Hang in there, Shrinky ;)

Joanna Jenkins said...

I yiyi, how frustrating. I know you know that the squeaky wheel gets oiled and kicking and screaming, so to speak, helps bring your needs to the full attention of the "service" people. Ugh-- It's a shame but that is how it works in the US-- If you don't ask for it they sure as heck aren't going to offer it. If it's been approved and they can get away with not actually providing the service they will. And the second they can wash their hands of you they slam the sorry shut.

That's why warrior moms like you deserve an extra high five and support. Hang in there and keep pushing-- As they saying goes-- When the serivce providers see you coming, they should say "Oh sh*t".

I'm cheering you and Sam on... and I'll be your wing man if you want help kicking ass at the canteen.

xoxo jj

TechnoBabe said...

You have your hands full. Sweet Sam must be having a devil of a time at the canteen. He seems to be at an age that services end. I know you will find something that is available. Just a shame you have to search it out and spend your energy and time when it could be brought to your attention before you do all that work.

tattytiara said...

Oh man, I'm upset for you. Rant away, my dear.

Middle Child said...

Oh dearie me - I do understand - Our situation was so different as Don was an adult when he became a Quadriplegic - but so often we were not told about what was there for us and it was only when desperate I went searching I found things - I won't tell you my opinion of social services or bureaucrats as it would be a list of swear words...

What is Sweet Sam's condition - ? He has such a happy face to think of him being afraid or bullied is awful. What people do not realise is that those with disability of any sort are already doing it tougher than the rest of society - and then more is inflicted... This very reason is why I fought so hard and am still to get justice for my husband - like Sam but in a different way the odds were already against him...we will be able to call ourselves civilised when these things do not happen - until them our civilisation is in the Dark Ages

Shrinky said...

Thank you dearest bloggie-friends, I feel cleansed and calmed for having spewed out all that is bad (dabbing my mouth).. I am so glad you understood where this came from.

Therese, I forget not everyone knows Sweet Sam lives with autism, this is also coupled with severe learning difficulties, giving him a mental age of around 7yrs. That said, he is usually a very happy lad, and an absolute joy to be around.

Ami said...

Love the happy picture.
I can see why you call him Sweet Sam.

So sorry that the people who are being paid to HELP aren't helping at all.


You must remember though, that many public servants are, um, stupid. And have NO idea who they actually work for.

As far as ranting and being pissed off and using your blog to say so?

Go for it.

It makes me feel more normal when I use MINE to rant.


Suldog said...

My prayers for success, Shrinky. Lord knows you deserve some goodness after finding out the first bit.

Shrinky said...

Ami, cheers, sweet lady.

Jim ((((((((thank you for that)))))))))))) x

dykewife said...

there's a blog, "mother of shrek" written by a mother of a (now) man who has autism (is autistic?). she's in england (yes, off island) but she might be helpful in things useful to you or know of resources. you probably already have the link, but just in case:

sorry i'm not more help.

Shrinky said...

Hey dykewife, how great to see you back here! Yup, I know Casdok well (thanks) - her circumstances are rather different from ours, as her C lives in residential care, which alters the type of benefit claims we are elegible to seek for our kids. On a day to day basis, Sam is easy as pie to live with - it's just the frustration of accessing the services he needs that drives me demented!

SJ said...

Your ranting is very understandable. Some people would have gone all violent and vendetta on the govt department(s) in question.

Shrinky said...

Haha, SJ, maybe I'll save going "postal" as a last resort!

Anna said...

Hey Shrinky instead of 'Sometimes I honestly feel like pulling my hair out at the roots' - you should go and pull their for keeping you in the dar for two bloody years ....

I am sure all will work out on the end, just keep up the good spirits. Anna :)

Shrinky said...

Oh Anna, I can't deny that thought has more than once crossed my mind (grin)!

Land of shimp said...

Oh Shrinky, don't worry about grousing a bit. It's a scary time in anyone's life and even more so when a special needs child crosses the legal threshold into adulthood vs. childhood. None of them ever seem ready but I can understand why it's even more stressful for you with Sam.

I hope some good answers reveal themselves soon. I don't know if this would be a possibility for Sam but in the U.S. the grocery store chains employ people with developmental delays or disabilities as baggers and people who collect the carts in the parking lot. Are there corporations that have programs like that where you are? You've mentioned Tesco.

I just know Safeway, which is a grocery chain here in the U.S. has very good programs for employment and training. Just a thought, I'm sure you've looked into everything.

But please, feel free to talk about troubles. I'm like you, I tend to withdraw when I feel like I'm not at my best...not at my know, have all the right armor in place but it does help to know how many do care.

I have every faith that things will work out for Sam, if for no other reason than he has you. You are clearly one of life's warriors :-)

Parabolic Muse said...

you listen here. You blog about this. This is LIFE. For cripes sake! No apologies!!


I sure hope things are better. I would be mad as hell. freaking morons.