Are these parents right to keep their disabled daughter a

[TheDullWitch]

Story here

"I bet the website is more to do with getting publicy so they can sell the story and make a few quid later. "

What an utterly vile comment.

Well jimjams, lets watch this space and see what happens.

Try this link

The arguments put there paint a slightly different picture.

No-ones forcing anyone to believe anything, but its well worth a read to consider some points on the other side of the fence.

I wonder what would have happened to Ashley if she had been a UK citizen.

My opinion for what its worth is that this child would at the very least had been made a ward of court whilst social services, her NHS trust and lawyers saw her as a legal case to be debated over by the House of Lords and the Court of Appeal (for many years). And at what emotional cost to the parents let alone Ashley, not just a financial one?.

And if they were paid, where would the money go? Perhaps it would buy their dd equipment or therapy. Bastards.

Or do all carers have to live in complete poverty? Article from the Guardian here about how disabled children cost 3 times as much to bring up. Oh but of course if you're a 24 hour carer you can't go out to work. Nor can you swan off to the med. If they did make money out of articles what do you suppose they'd spend it on?

That's a good point JimJams- ds trashed our last house so much we were kicked out and lost the deposit. Cost us a bloody fortune!

I don't mean to inject any levity into this serious thread but have to admit that I just read Edam's "The abuse thing is a canard" and I'm sitting here thinking .. it's a duck? what?

That link gives the picture for how long you have to wait for everything as well, and how the children suffer permanent damage because they don't receive necessary equipment.

I would have thought that fears for your profoundly disabled child growing up would be just about universal.

Care is so patcy, abuse happens, and the time comes when parents just can't care for their child in an appropriate way. How awful is that? I'd have thought that anyone who didn't 'fear' their child growing up would lack a normal amount of imagination and forsight!

I know that my Father's cousin was utterly devistated when her son had to go into full time care, but she was so old and frail she simply couldn't cope.

How can you not fear that?

Jimjams, I havent implied they wouldnt spend the procceds on their daughters care, I've merely made the point I think that's what will happen.

Here's something else I THINK will happen, I'm not saying I agree with it before anyone puts words in my mouth but I THINK the family will have to at some point uproot and live elsewhere in anonimity for fear of vigilantes taking the law into their own hands.

I dont for one minute condone those actions but if you read other sites there's an awful lot of angry people out there.

Thinking about it if someone offered me a few grand for an article about ds1 I would take it. We've had to put his 6 months US therapy on credit card (after taking out a loan to clear off the previous credit card), and once the 6 months is up I doubt we'll be able to afford another 6 months. If its working well at the end of 6 months and the choice was stop through lack of funds, or get the funds together in exhange for a photograph and a few quotes I'd do it.

its fairly easy to be 'angry' when its hypothetical isn't it .. maybe anybody who's 'angry' should volunteer to help look after a seriously disabled child .. preferably one with the mental and physical capabilities of a 3 month old infant

I hope they do sell their story .. I hope they do make some money .. good for them .. its not like they're going to buy a sports car with it is it ?

Toastee I am sad to say that is a possibility, they are a religious family I note but there are some real extremeists in america, esp. in teh ultra religious communities. Hopefully they'll be OK- America is a big place.

Exactly Twiglett. How many angry people would get up every 2 hours for the rest of their lives. How many of these oh so angry people would never take another holiday, how many would accept that they could never work again. That is the situation for some carers.

Yea I'd agree whole heartedly jimjams the site does highlight the inadequacies of the system.

Like I said, it makes an interesting read.

I said the link- I meant my link toastee to the Guardian article. That is a very interesting read. I looked at your link and it was full of people with differing opinions.

I have done an artcile about the birth cok up that may be linked to ds's disabilities and gladly taken the money (although that was before the dx), another magazine wants to do a story about Sam's BIBIC therapy; will gladly go ahead if they want to do it. Won't geta penny for it, but that'll get knocked off the therapy bill.

Ni idea where bibic money comes from after next Summer. And we might have to ditch it, as ds3 will need it if we can't get his language etc sorted and can't give it to one and not the other.

From the Guardian article- this refers to the UK.

"Disabled children can wait months for a basic assessment of their requirements, and then more months before they receive any equipment, physiotherapy or speech and language support. For very young children, the delay in getting a standing frame from their primary care trust reduces their chances of ever being able to walk unaided.

Disabled children cost three times as much as other children to bring up. Yet their mothers are seven times less likely than other mothers to be in work, mainly because of a lack of childcare and early education provision. Small wonder that 55% of disabled children's families live in poverty and fall into credit card debt for food, heating and housing.

Their parents endure daily battles with multiple, uncoordinated health, social care and education providers. In the absence of regular short-term breaks, their relationships can come under strain."

The sevral months for us- well sam ahd his first referral at 2, finally saw a SALT just before his seventh birthday.

the childcare is an issue too- Uni won't let me off work experience next April (fgs- I'm hardly a 19 year old who has nnever had a bloody job!), whether I can actually do it remains very much to be seen- if I can't, they throw me off. Disabled kids don't count as an 'excuse', apparently.

We waited 4 years for SALT- for ds1 who aged 7 can't talk. That situation will get worse because they are changing the rules - so children who are not talking will not be able to access any therapy. When they start to talk then SALTS will work with them, but not before. SO the children most in need are unable to access any therapy at all. If you child has problems pronouncing a few sounds (like ds2) then they will receive a block of speech therapy because its easily fixable.

Like you Peachy I hope for everyones sake nothing bad happens out of this episode.

It just kind of worries me that the family now could find themselves faced with big problems that a few years ago they coulnt have dreamt of.

Sam's salt report says 'as his difficulties are related to ASD, there is nothing salt can do so he is discharged'

helpful

Esp. as every other agency tells me Salt round here are the social story experts.

OT referral denied as they ahve a 2 week from receipt of referral deadline for you to fill in the paperwork,a nd it took 3 weeks to get to me. PAed ahs to re-refer, after our next appointment whenever that is.

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giddy your life is not over, if I can do the access and go to Uni you could too I am sure. Your Dh is right,m you've done so very well, you have shone- maybe in a small space but with real value. feel prud of what tou ahve achieved, many couldn't.