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Carers I interview - Page 11 - Carers UK Forum

Carers I interview

Share information, support and advice on all aspects of caring.
112 posts
Fran- you should check out the amazing Barry West. A man who's been paralyzed from the neck down for the past 15 years who got to the summit of Ben Nevis with his band of human huskies pushing and pulling his chair and Ben Nevis is just for starters!
I'm all for everyone no matter what their disability having access to whatever is out there to make life fuller and more enjoyable. However, not all can access everything. There are some folk, like my daughter, who endure extreme and constant pain and suffer allodynia/hyperalgesia which makes being even lightly touched excruciating.
[quote]We have always avoided special schools, and that has meant that my son has been challenged at every turn to struggle to make his own way in society - he is not specially gifted, (bottom 1% IQ according to one educational psychologist) but I have always pushed physical fitness hard]

I am finding this thread both interesting and disturbing in part, however I guess that it is standard practice on any type of forum that there will be differences of opinion.

I have highlighted your thread Excaliber as I need to ask, what exactly do you consider to be "soft options"? I would not dream of criticising your methodology as you know your son better than anyone and you have obviously have his life mapped out for him and have organised everything down to the last detail, if it works then I commend you for it.

But as has been said many times before, everyone is different, carees and carers. Your ideas of soft options may be my ideas of workable solutions..who knows? Another question if I may..how would you manage if your son refused to go along with what you wanted him to do, I mean physical refusal? What would you do?

Look forward to hearing from you. Image
Youngest is profoundly autistic with severe learning difficulties, non verbal etc, there is no way he could go to a mainstream school other than if we were just insisting for the sake of it, it certainly wouldn't be fair on him and probably not fair on the other children either.
OK, in your situation I would be writing to Social Work and asking them to provide full time care for my child. Not because I wanted it, merely to up the ante and as a starting negotiating position. This is a poker game, you have to keep your cards close to your chest. Very close. It would cost social services approximately £150,000 a year to provide the care that you are providing, give or take £50k each way. That puts you in a very powerful position. Know what you are worth. Decide what you really want and need to keep your child at home, ask for it in full, then settle for half. In your case I would be willing to settle for around £50k - enough to provide a team of workers and pay for all activities. Yes. I'm being totally serious. But if I got £30k I wouldnt be crying. And your Social Services Director would be claiming his bonus for getting a great deal for the public purse ... I kid you not. And tell your son that he WILL be going ski-ing, and Scally will be taking him! Image
Do you know what? I am just going to do that! I have had a major run in with LEA these past couple of months that I can't post about but you have jogged my memory on how I got to this spot in the first place. I'll post back on this when I have an update, lets put it to the test, eh? Edited to say, are you aware of the looked after child status, specifically designed to scare the bejeezes out of all parents asking for too much.
Vicky
Too many questions...!!
are you aware of the looked after child status, specifically designed to scare the bejeezes out of all parents asking for too much. Vicky
Never bothered me, always looked at it as a form ticking kinda thing... if social work want to take charge of my boy now they are welcome to him, honestly. I suspect they dont, and normally plan on that basis.
by frandrake » Tue Apr 26, 2011 10]
How would I know ... why not ask them yourself, I am not a ski instructor!
I don't begrudge you a single thing of what's available, why shouldn't your son do everything?
I just think you're very lucky.
This isn't a competition to see who's looked after the most disabled person.
OK, thats cool. I don't actually regard myself as uber-lucky, you know. My son has a diagnosis of Downs Syndrome, - its a bit of a bummer given all the prevailing negativity, and I have shovelled a fair amount of pooey pants in my time, but that was then and this is now, so I'm learning to cope and thrive !!
ladybird » Tue Apr 26, 2011 1]http://www.carersuk.org/images/icon_smile.gif[/img]
Ladybird (edited) I havent got the faintest idea what you are talking about. Soft options ... I dont do maps or all that social worker stuff, I just ignore the negatives, focus on the positives and work on them. My son is perfectly capable of vetoing any of my fancy ideas, in fact I have been working on that for some time in the hope that he will oneday tell me to bog off and go find a flat and job of his own without my help, however, that may be some way down the road. In the meantime, we have a fairly chummy relationship, albeit he still thinks its cool to nick all my stuff when my back is turned. If in doubt, I just bribe him into compliance with chocolate or a small bottle of low-strength Belgian lager.
Scally - I haven't the faintest idea what you are talking about. I think you are confusing me with someone else! Or someone else has confused me with someone else. I haven't made any comments about your son and am very supportive of your efforts. The only comment I have made on this topic was to highlight a very inspiring man who doesn't see his disability as an obstacle in enjoying winter sport.
Dragonlady/Ladybird confusion sorry !! Its the pale background I think. Thats what comes when you try answering several Q's in the same post, easy to come unstuck!

I remeber pushing a wheelchair half way up Snowdon once - (to the top of the Miners Track from where it gets impossibly steep) it was hard work but very rewarding!
Ladybird (edited) I havent got the faintest idea what you are talking about. Soft options ... I dont do maps or all that social worker stuff, I just ignore the negatives, focus on the positives and work on them. My son is perfectly capable of vetoing any of my fancy ideas, in fact I have been working on that for some time in the hope that he will oneday tell me to bog off and go find a flat and job of his own without my help, however, that may be some way down the road. In the meantime, we have a fairly chummy relationship, albeit he still thinks its cool to nick all my stuff when my back is turned. If in doubt, I just bribe him into compliance with chocolate or a small bottle of low-strength Belgian lager.
I'm sorry if my questions weren't clear enough for you Image You mentioned in your post that you had never taken soft options and I wanted to know what you considered these are.

Also wondered how you managed if ever son didn't want to follow your ideas for him but you have given the answer to that quite clearly in this and your previous posts.

Glad to hear the chocolate and mild booze are doing the trick for you, thanks for your reply.
I also found that chocolate, mild booze ( and money!) also did the trick for my sons when they were 16- and they don't have Downs Syndrome or any other disability Image
Oh, right, er: "what are soft options" ?
I guess handing over childcare to Mr Nintendo would be fairly easy ... that plus a plentiful supply of fast food, zero physical challenge, useless drugs, too much uncritical love, and a total lack of intellectual stimulation. I mean, the conventional wisdom is that our kids are destined to be obese and dim and die young, sort of like Elvis, innit? My soft option is assuming that my son will never become an Olympic athlete, Brain Surgeon or Rocket Scientist, but I'm broadly in favour of assuming that he will do all of these things until proved otherwise. He only has Downs Syndrome, it's not as if he has a serious problem or anything. He's just a late developer !!! Image
112 posts