please help my 8 year old son with cerebral palsy (I'm not asking for money!)

[kakamg]

hi my name is karla griffiths and my son has severe cerebral palsy and other complex health problems, he lives in a nursing home where i placed him in 2008, social services do not agree with this and are continually hunting for foster carers as it is a cheaper option, the people they bring in are not experienced or qualified enough let alone equipped for the job. in short my son needs the 24 hour MEDICAL care and attention he currently receives.

please read this and if you support this cause please sign the petition and pass on to your friends.
the more people, the more impact we will have against an extremely flawed system.

please follow the link to

Keep Miles Griffiths In Footprints.

many thanks for taking the time to read this i will answer any questions you may have.

Karla xx

I have signed it and not been asked for a donation??

Karla I am very sorry about your son but foster parents are paid to care for the children because they cost a lot to look after. They make an absolute pittance. I agree that it's insane that you are not able to access the same funds but I think that you are being very unfair on foster carers who largely do a very tough job with kindness and love for the children they care for

i-petitions, the host site for the petition asked me for a donation to fund them, but only after I'd signed.
I closed it without donating, and my signature has shown up on the list.

Karla the site takes signers to a donation page once you submit a signature. It seems to be a voluntary thing to do with the running of the site. No-one has to do anything but close the page as the signature has already been added.

Think I did too Jas. Probably didnt notice the donation request!

Have signed. Good luck with your campaign x

but surely you cant be the only person with a disabled child in your area? how has everyone else managed it?
Can you just calify, is it a nursing home or a respite centre?

Yes its unfair that FC get more support than parent but its their job, they should be paid well and tbh they arent!

Is he at school all day?

I'm sorry, but I can't sign.

If you have made this decision and as it isn't being funded by yourselves, well then really I can't see how you should have a say.

If you feel unable to care for him, then it's up to the proffessionals who have taken on this role to decide what is best for him.

If, like you, they cannot afford to care for Miles as they are currently, then they are doing the same as you by looking at another option.

Life deals a hard hand to some of us, but that is just how it is.

while i agree a child is for life not just Xmas, please feel free to judge when you are in my FULL situation.
Karla

Several posters are, karla. 2 on this thread indeed (that I know of) You have made your choice, they have made a different choice. Do not assume that nobody here has a child with severe cp.

They do.

Is Miles being nursed on an airflow mattress? If so, he shouldn't need turning every half an hour. What does he do when he's in his wheelchair for longer periods than half an hour?

Have managed to sign now. Good luck with your campaign. What a heartbreak for you all but your little boy looks so happy.

would one of these self turning beds help with the turning issues? no carer required apparently

I'm confused by you saying 24 hour medical care. If your son needed 24-hour medical care it would be provided by the NHS (probably somewhere far away). Also by half hour turning, and presumably no fundo or a failed one?

[Not getting into a debate about GJ tubes, as many people live in the community with those].

Without however many years of private funding of a very expensive (and some would argue, not best for a child) option, long-term fostering would probably have been the first option anyway (52-week residential school is usually for those with more severe behavioural or medical needs).

So sorry, I can't sign either (although I do feel very strongly about the lack of care hours people get to keep their kids with them).

My definition of 'medical care' would mean Doctor-led.

I have signed.

I cannot begin to imagine how difficult it is to look after a child with severe special needs. Clearly some families find ways of coping at home but if kakamg and her family have decided that it is best for the whole family, including Miles, for him to be looked after like this, then they have made the right choice for them.

Can I clarify? Footprints is a carehome, so does it provide short breaks or long term residential care?

It provides long term residential care for children with profound and multiple disabilities and also holidays for children (so I guess that is respite care?). It's a charity, not run by the council.

I have signed.

My ds has quad CP, but is not severe, It must have been an agonising desision to put your son in care. You do not deserve all of the negative comments on here.
I hope you come back to up date us on how your petition is going, and how your DS is getting on.

I really don't want to come on here and bash you as I think that has been done and I know I can't know every detail of your situation therefore I have to respect your heartbreaking decision.

However, as others have tried to point out, there ARE people on here in very similar situations, looking after their highly dependent, severely disabled chidren round the clock. My DS has SLD and challenging behaviour, which means that he has to be watched nearly all the time and we are subjected to violence daily. Others have children with severe CP and high health needs who require 24 care.

Some of us have moved house (interest only mortgage here as we can't afford anything else), lost our houses, reduced our hours at work or stopped altogether and watched our other children suffer. My younger son was wandering around the house last week with a cardboard box on his head with eye holes cut out to stop DS1 hitting him. Funny and ghastly all at once!

From my own perspective, while I wish you success in your battle, I can't sign the petition because I would rather support those parents who are struggling to keep their children at home and I would rather fight for better respite for families so they are not forced into decisions like yours.

Your post has really stirred up emotions because it has highlighted that those who are looking after their children at home are getting the worst deal possible.

You may not be asking for money, but you are hijacking our forum.

There are many people on mn in difficult situations- quite a few on this thread already in fact, but they contribute a great deal to the community here, whereas you appear to be here for the first time.

I am sorry you are facing a difficult situation, but that does not give you the right to make this request- there is a charities noticeboard if you want to raise awareness of your cause, but I feel that as a community we should support valued members of our community IYSWIM.

I make no judgement on your choices- I have never faced such a difficult choice, for which I am thankful.

I have signed and wish you luck.

I am absolutley flabbergasted and distressed at the high handed and hurtful attitudes on here from some posters, along the lines of "well I would never do this, so I am obviously a better person than you OP" and "you handed your kid over so its none of your business anymore".

So, when you send you kids to school and put them in the hands of the teachers you absolve responsibility for them for the day do you?

For what its worth, my brother has severe and multiple disiabilites, and with the help of our local authority, we have managed to keep him living at home with my (elderly) Dad for now, with lots of respite. My parents were of the generation in the 1970's that were told to leave the child in hospital and go home and forget him (I am not exaggerating this, these were the doctor actual words). I grew up in a loving home, but spent my childhood watching my mother and father work themselves to the bone to care for him, all the while fighting with the council for every little bit of help. My brother has had and continues to have a great life, but my mum died from worry and hard work at 66.

How dare anyone come on here and dictate to the OP what she should do or feel with regards to the son she loves and wants the best for? If you can't bring yourself to support her then go away and read another thread.

stillbobbysgirl - I think that some people - like myself - are just explaining why we won't be signing the petition. I think that is fair enough on a public forum. Unfortunately, the OP has suggested that no-one is in as bad a situation as she was, which is simply not the case. To compare school to permanent residential care is obviously nonsense.

The situation your parents found themselves in is not dissimilar to some parents on the special needs forum who are working themselves - ourselves - into an early grave as families with disabled children still do not get the support they need. Yet they fight to keep their children at home like your parents did, and get so little in the way of help. They fight to keep them at home because - like your child/ren - that is where they belong. In their family, in their community. Just like every other child.

The thread has brought up strong and difficult emotions for some of us who feel that we would be better off in so many ways if we put our children into care, but cannot do it. Notice that most of the 'hurtful' posts are from those who are hurting - parents of disabled children. I respect your experience as a sibling but don't think that being a sibling is the same as you don't feel the full weight of responsibility and ultimately, you can walk away. Most parents can't, just as you would find it impossible to walk away from your child