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?
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to wave, but there are a couple of things which did used make life so much easier for us, but which have recently been withdrawn.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Also, since his transportation has been withdrawn, the transport for the respite care we receive at Braddon has also been withdrawn.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?