Monday, January 4, 2010

In Answer To Your Question

Isn't photo shop wonderful? (Grin)

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

Hello XYZ,

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

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to wave, but there are a couple of things which did used make life so much easier for us, but which have recently been withdrawn.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

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

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

Also, since his transportation has been withdrawn, the transport for the respite care we receive at Braddon has also been withdrawn.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

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

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

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

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

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

(Okay, I am nearly through - promise!)

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

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

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

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

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

With kindest regards,

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


TechnoBabe said...

Amazing and honest letter. It sure better not get caught in his spam. Can you give him a follow up email in a couple to assure his receipt of this?

Akelamalu said...

Email and post it - you should definitely send it! I hope he can help it's disgusting that all this help has been denied you. Have you thought about the press - maybe they would take up your cause - certainly someone should.

Good luck m'dear and I'll send Reiki to your situation. xxxx

Leslie: said...

I am so sorry you're going through this. I can empathise, not because my daughter is autistic, but because she is bipolar. When she finally had a 100% breakdown and went into the hospital for over a month, I had nothing but trouble from the psychiatrists, psychologists, and social workers. They took all her rights away from her (and me! because she's legally an adult) but would not include me in knowledge of her treatment, prognosis, or long-term requirements. It took me to the point of telling them that my daughter could not return home - i.e. she was now homeless - before they finally found her a halfway home where I could visit her every day and make sure she was okay until she could get her own place. The red tape is terrible plus she is lumped in with welfare bums, drug addicts, alcoholics, etc. in getting her disability payments from the government. She can't get into low-income housing because she does not have a child so she has to pay full rent for her place as though she were working full time in a career job. She has to survive on disability + only a limited amount for part time work. Over that, any money she gets is taken away from her! She's high functioning, extremely intelligent but so vulnerable to panic attacks and worries that her meds might stop working. Having a child (no matter their age) with a disability is so heart-wrenching and debilitating to the parents. My daughter did write to someone at the newspaper, but never got a reply back, so she was discouraged from attempting to do anything else. *sigh* I'll keep you and Sam in my prayers. Hugz

jay said...

I agree with Akelamalu. You should email AND post it. Emails can be accidentally wiped, letters can be mislaid, so do both. ;)

I would also perhaps point out that you're joking when you offered to kick Sam hard. I know it's stupid, but Social Services can be very black and white sometimes and the last thing you need is for someone to write it down somewhere that you threatened violence and have it used against you. *Sigh*

Good luck! My experience has been that MPs can actually be very useful in getting things moving. Let's hope so!

Kristina Hughes said...

Wow. Pause, deep breath and Wow again. I know I'm a few years behind but this post has given me an insight into the struggles we'll be looking at with Jude in the future. I just hope I have the same courage as you to pull out all the stops. I see that you've now had a response to your email and am delighted for you - GO SHRINKY! and fingers crossed that things start shifting... I assume you've heard of these guys but thought I'd add the link

Shrinky said...

TechnoBabe, looks like this story may get a happy ending, after all (smile).

Akelamalu, hubby works in the media, slap bang in the centre London! Sadly, we are one of hundreds, if not thousands in the same, if not worse, situation. Our island has it's own seperate government from the UK, far smaller, and much more accountable. I have faith we can be listened to, we just need to find the right ear.

Oh Leslie, my heart simply aches for you. PC has gone too far when it excludes keeping you involved and informed regarding your daughter's best interests. Who else does she have to fight her corner for her when she is unable to? I have a nightmare scenario in the future of Sam finding a mentally impaired girlfriend and of them producing a child. Did you know, as they would be adults, we would have no sway whatsoever over providing any birth control for them. I would love Sam to have a girlfriend, but there is no way he would ever be able to cope as a parent. I, or the other set of grandparents, would be the one to raise any child of his. Yet it is an infringement of his human rights for me to (in later years) request a vasectomy for him. It's nuts. I sure hope you and your daughter receive the relavent support and help for her she obviously deserves. (x)

Hi Jay! I get what you mean about the tongue in cheek reference I made about kicking Sam, but hoestly hon, whatever gets their attention is fine by me, I'm kinda' running out of any other options!

Oh Kristina, on a day to day basis with Sam, it isn't so much of a struggle at all, honestly! Sam is easy, it's the red tape that ties us in knots. The early years were hard, before we learned the hoops to jump through, most of my time then was taken trying to pin down a reliable diagnosis, and then to set about to somehow "fix" it, and to put it all right. I cannot tell you how much better life is for us now. Thank you for the link. I tend not to involve myself too much in support groups, although they can provide useful information and contacts, I've reached a place where autism is no longer the largest part of my life. Sam is Sam, different and unique, just as all my kids are. There are some dedicated parents out there who are willing to trade in their own identity for the cause (not you, I am talking about the militant variety) and I am leery of joining organisations where I feel subtley bullied into joining with them in their constant fight for the greater good. I've lost the taste and the energy for it. That is not to say there aren't some very valid, helpful orgaisations out there, it's just that I find that is not the route for me.