anyone seen this? Child with CP in nursing home.

[lisad123isasnuttyasaboxoffrogs]

here

Im not sure why but feel very sad that this little lad will spend life in a nursing home. I know I cant judge as Im not in the position.

She trying to get SS to pay for carehome and not FC as she thinks they are doing it because its cheaper (they might well see it that way)
But I think I would rather my child be able to form close relationships in a family setting than a care home with countless carers :(

Im sorry if I have upset anyone posting this. I havent commented on OP as I dont think I would be flamed

I wouldn't presume to judge this mum for her decision. There have been plenty of times when I have felt I can no longer cope with my ds1, despite the overwhelming love and desire to help him. I think she is fighting for what she feels is best for her child. She obviously trusts the residential home staff to provide the right care for her ds. if she didn't care she wouldn't be on here battling the powers that be for what she sees as the best thing for her ds, like we are all doing in different ways and with differing opinions.

I cant believe this family came to their decision lightly. They have cared for him for most of his life, perhaps the 24/7 care was just too much.

Either way they are happy that their son is thriving in his current environment, attending school and enjoying the company of familiar (not faceless) carers and the other children in the care home and enjoying lots of activities. No loving parent would leave their child in an environment where he was not happy, and they have done their best for him for most of his life, why should their attitude change now.

Regarding whether he would be better in foster care. Firstly he would need to get to know 2 strangers. He'd be in an environment where there would be lots of faceless carers helping the fp. A possible lack of other children to interact and stimulate him. Possible friction between the parents and extended family and the fp as they would have to see their son when it suited the fp rather than the open visiting he currently has. Possibly leaving his school. That is all before the medical considerations involved in his care. It seems to me foster care is the worst of 3 options.

Yes it would be ideal if Miles could be supported in his own home by his parents and carers 24/7, but for reasons it is unfair to speculate on, this didnt seem to work out for them.

I think the parents should be supported in their decision to keep their son where he is happy. It has been very unpleasant seeing the same judgemental views posted here as I have seen on other theads.

have to say if I had to choose between residential care and foster care I would choose residential.
when dd was little she had a link family(cheapest option for SS) but because of something that happened within the family it stopped overnight, this was horrid for us and dd, who had grown to love the family.
it is much better now that she has respite at at school,. staff change but she accepts that as there is always someone else she knows.
now she only goes fro the odd night, but if a child lives with people and they change thier mind or something happens to mean they can't do it anymore, it would be awful for the child and parents.

Precisely 2 shoes, foster care is a lottery, and the 3rd best option for this little boy. If his own parents could not cope for various reasons, maybe lack of support, where he is now is his best option, as the fp would also be struggling and the fc may break down.

He would need a night sitter at least, plus care through the day. As he got older maybe 2 carers to help with the turning at night. SS maybe saving a few pennies but what is really in the best interests of the child?

Not everyone has the strength, physically and mentally to cope with a seriously ill child, people and families are different. The bottom line is, after months in and out of hospital from home, has his health been better since being in the hospic?. He looks happy and well nourished so I hope this is the case.

shame the op didn't come back on that thread and say more.

Agreed, Starlight, r3dh3d, cansu and sneezecakesmum.

Bloody hell- I read a thread on MN once that used the phrase 'special needs top trumps'. I couldn't quite see what that meant. Well, unfortunately now I do.

Of course we all can have an opinion, but some posters have been very harsh about this mum's situation. Who cares if you have managed to cope, she hasn't.

I think one of the real issues is that foster parents of children with disabilities of one sort or another seem to get an awful lot more support than birth parents.

I can see why. From an economic point of view [nb I am not supporting this approach!!] what you would need to do would be to offer birth parents just enough support (A) so that they don't give up and say they can't do it, but to offer foster parents enough support (B) to persuade enough people to take on the role. Clearly B is going to be a lot more than A. And my hypothetical evil economist in the social work department is rubbing his hands with glee listening to the 'a child is for life not just for Christmas' stuff; the more it can be made socially unacceptable for a parent to give up, the lower he can keep his A.

In the meantime it must make it even harder for families like this; to not be able to cope with your son's complex needs; to put him somewhere which can cope and which you think is the best place for him - then to see foster parents take him out of that somewhere, and once they do, to see those parents get loads of support which was not available to you as birth parents..... very tough.

No idea how to change anything though; the underlying economic argument won't change and the cost of actually responding to need in a fairer way has to be pretty astronomical, overall.

oh I love the dig at me again.
yes I posted that a child is for life not just christmas.
so fuck it.
flame away.
hope it makes you feel better.

Please dont 'arse' me Riven. Read what I said " As he got older maybe 2 carers to help with the turning at night".

Kindly read the post before swearing at people who are just trying to give support and not be condemnatory.

Its an incredibly difficult postion for the parents to be in, perhaps they felt so crushed by the system that they thought their son would be better cared for where he is. People can only do the best they can do.

when dh was seriously ill , he spent 18months extra in hospital due to lack of funding for carers. he needed 24hr specialised care which i think this young boy also needs. bringing dh home was wonderful but also very stressful as some of you may recall. Ideally he would've been placed in a care situation with trained carers, nurses etc on hand, but due to the nature of dh illness this was impossible. There was 2 options, specialist hospital or home. It took months to sort out the home situation to be able to bring him home. And it failed. i dont want to go into details, but it was very srtessful and not ideal.

I support the families decision to place their ds in the best possible care setting for HIM. Just because its not a decision that someone on here would make or not make, doesnt mean its the wrong one iyswim.

I think she meant Arse as in "oh heck" not Arse as in "what piffle". (Struggling here to evade the Naughty Words Filter but ykwim)

i am sure the when riven reads this, (I think she is off looking after her dd) she will feel like me, that if this the way the sn topic treat us, we might as well give up.
I wish the new poster well, and hope she gets the right outcome, although having just battled to keep dd in her school, I can't see an online petition signed by strangers will sway anything.
I am so pleased you think this is a game of top trumps, that you would rather just ignore people who might have an idea what they are talking about, rake up old posts and treat people who have been helping on here fro years with contempt.
tba cba

I don't think anybody's treating you with contempt, 2shoes. I think the contempt's been directed at the OP of the other thread, tbh. I don't see the relevance of a poster being new or being on here for years either, sorry. I don't see how people are treating you badly, except by disagreeing with you which, as you've said, does happen when people post on a public forum.

We don't have to be divided on this. Like you/ Riven said before, we are allowed to disagree without it dividing the board outside the thread.

I think we all agree that more support should be put in by SS so that people don't face situation's like that family's, for example.

OP has come back on the other thread and said this, among other things:

"to all the people i seem to have offended, I WOULD HAVE MILES HOME TOMORROW IF IT WAS POSSIBLE BUT IT IS NOT:
*our house cannot be adapted
*i cannot turn a child every half hour throughout the night each and every night
*there isn't appropriate social services respite available to us
*we do not have the money for my husband to give up work
*social services offered 9 hours a week direct payments
while i agree a child is for life not just Xmas, please feel free to judge when you are in my FULL situation.
Karla"

R3. Sorry I read it how it says.

'You reckon kids with quad cp need 2 people at night to turn them?'

Maybe 6 years olds dont, but 13 year olds certainly would.

The OP has put on the original post how poor the services were that she was receiving. Everyone should fight for adequate care and provision - I would sign any petition for anyone fighting for the care of their child or loved one of any age. The OP didnt deserve the flack she got, it is enough to say you dont wish to sign the petition.

Well I for one wonder how we will cope with dd when she is 13+.

She has PMLD and CP. I can't imagine that residential school won't be a serious consideration for us as a family - dd is surprisingly mobile given her condition and it really will take two people to get her washed, dressed etc. Already our OT has specified that it needs 2 people to hoist her now.

I hope we won't be judged for saying 'you know what, we need more help now'. The last thing we will need when making what is probably the most difficult decision of our lives is condemnation from other SN parents :(.

I think (she said, shamelessly trying to drag the thread back onto the original topic before it degenerates into an unseemly brawl) this just shows how far your idea of what is best for your child is influenced by your early experiences of their care and the knowledge you have access to then.

I'm sure if DD1 had spent her first year in hospital and focussing on nursing and operations I'd be thinking of her more in terms of nursing care than I do now. As it happens, as she was physically very good in her first year, a lot of my effort goes towards keeping her mobile and trying to resist the medicalisation of the home and school environment. I will NOT install a stair lift, if it takes me the next 10 years to teach her to climb stairs. I will NOT give school a wheelchair for her, because they'd never get her out of it. But if she hadn't ever walked I would only have the vaguest concerns about those things.

'Course it's more complex than that - my choices for her are also driven by eg my foolhardy assumption that all medical knowledge can be mastered by an averagely intelligent person with internet access, and my deep suspicion of the limp touchy-feely nature of SN education. Etc. But my point is that in the Land of the Norms, though they bicker about breastfeeding and baby-led weaning and the best sort of pushchair, fundamentally they are making tiny choices based on universally available information. Everybody knows you need a carseat. And all carseats are pretty damn similar. The sort of decisions we have to take for our kids are in a different league. We are dealing with Really Big Issues from the off, and we all start with limited information and less support; you make the best choices you can based on what you've been told and then the next day you have to make another set of choices based on the mess you've just got yourself into.

What am I saying? Er... I guess that I'm surprised we manage to agree as often as we do, really.

r3. I know what you mean about the wheelchair. One of the saddest moments ever was seeing a gorgeous little boy we know in a wheelchair for the first time. He wasn't bothered! He was busy doing 3-point turns and handbrake turns and chasing his brother!

I guess it is about acceptance, not just of the CP and the child, but also of parents' decisions about what is right for their child.

2shoes
I'm guessing the raking up old posts is aimed at me - well, it wasn't supposed to be in a nasty way at all. My point was that nobody would judge riven for feeling how she's felt at times - it was hardly brought up in a way to make her feel shit, more a point about how far people feel pushed to the edge at times. I'm afraid my brain remembers most things it reads and so it's just info that is there, not sought out for a sinister reason. I'm certainly not judging her, as you said somewhere - that was my entire point. You seem determined to misinterpret.

Parents are often exspected and left to manage, whilst employed carers health (and backs) in theory would be protected. I am not allowed restraint training (to protect impulsive ds 11 from injury/death) because it takes 2 to safetly restrain.

I think we all make the best decisions we can for our families given our set of circumstances.