I am so shocked by the ignorance, that I have had to break mn rules

[2shoes]

By XXXXXXX on Wed 26-Nov-08 09:03:00
Surely if you have a child you are responsible for its upbringing, however it turns out?

Residential care is surely the course of last resort?

I have a very severely disabled second cousin. His parents (with great regret) were forced to put him in residential care because he became physically too strong/heavy for them to handle. They did not see residential care as an "option".
and copy this from another thread, that I wish to god I hadn't read.
is this really what the "norms" think.
I am gobsmacked. do they really think that we just see residential care as an "option"
do they really think that we just dump our much loved child on the state

please discuss

[Hassled]

No, that's not what any sane person would think. Putting your child into a residential home must be the hardest decision any parent ever has to make, I can't begin to imagine how awful it must feel - and I'm sure that 99% of rational parents, with SN children or not, would agree.

Don't let the views of one make you lose your faith in the overall goodness of people.

[daisy5678]

I think it's very hard for someone not in the position of having a disabled child to understand just how hard it is and why it might have to be an 'option' for some people.
Though I take your point about the word 'option'.

It's too easy sometimes for people to say 'oh, I could never do that' without really thinking through what judgement they're making. Twas an unfortunate thing for her to say!

(I don't like the word 'norm' either though! Very divisive, imho)

[2shoes]

I used norm in anger, it was more to describe the poster (who I haven't named) than anyone else.it was that or swear.
bit wrong time for me as this is a decision I will have to make when dd is older and I only really realised that this week.

[Gettingbyjustfinethankyou]

I have a friend who put her severely autistic and very intelligent son into state care because he was a danger to his siblings.

An option? A last resort? No, actually it was sheer desperation and a few months down the line, the pain at acknowledging how much better life was as a family when the other child was away was really hard to deal with.

Do not judge if you haven't been there - it is an extreme and I know I am lucky it is not me making this decision.

[Olihan]

I have friends with a very severely disabled 19yo. She needs 24 hour care and will never be able to live even semi independently.

She lived at home with her parents until she was 17 when she began to attend a residential school during the week.

She now lives in a residential unit attached to the school and goes home once a month.

Her parents made the decision to send her to that school because her existing school simply did not have the knowledge or facilities to cater for her properly (they live in the wilds of Scotland so no other local options). She absolutely thrived at the new school - the change in her was huge and she made more progress in her year there than she had done in the previous 5 years at her old school.

They decided to keep her in the residential unit because she was 19. If she was NT she would most likely be leaving home to go to Uni/get a job (as her brother and sister did) and they felt that her disability should not deprive her of that. Where they live has very few options for disabled people and they felt she would be very disadvantaged if she had to stay in that environment forever. She is so happy in her new home and it has meant her parents have more freedom than they have had since she was born.

I think residential care is an option and should be an option for all parents with a disabled child, both for the child and the parents' sakes.

My friends have had 17 years of broken nights and constant care of their dd. As they get older they are less able to cope with broken nights and the physicality of caring for her - changing her nappies/pads, dressing her, feeding her, etc. At some point they will not be able to care for her any more.

It's not about 'dumping' her, or burdening the state, it's about finding the most appropriate care for her needs.

Just because fate meant they had a disabled child should not mean that they also have to give up the rest of their lives to care for her. The same goes for every other parent with a disabled child.

Residential care should be an entitlement for every family. An NT child will eventually leave home, why should that be different for those parents with disabled children? It's not their fault that something beyond their control means their child can not do that. It would be very wrong if they have no option but to give up the rest of their entire life to care for their child.

[HRHSaintMamazon]

2shoes tut tut.
you should know better than to try and educate the world.

you would think that mn was a safe haven full of intelligent and articulate people who had an understanduing of teh world they live in, ratehr than some bubble.

but sadly even here we are faced with people who are ignorant to the daily issues of dealing with a child with severe SN.

please dont letit upset you.

[2shoes]

Olihan bloody good post. I like the comparison with an sn sibling, I will use that when I start my battle with ss.

[TotalChaos]

agree completely with olihan - particularly "it's about finding the most appropriate care for her needs.".

[wannaBe]

iirc the poster in question lives abroad though, where it seems that responsibility for disabled relatives rests with the family - even distant family. So if this family had to put their cousin into residential care they were apparently also financially responsible for doing so.

She went on to say that say for instance if the parents were no longer alive, the financial responsibility for that relative would then rest with the next surviving relative, so potentially you could end up being financially responsible for a family member you didn't even know.

[daisy5678]

Not a criticism of you, 2 shoes, just the word really, but I get why you're angry and I'm sorry that you had to have that happen at a time when stuff's already difficult.

I think that J will need residential too at some point if the violence doesn't go, as it won't be safe for either of us once I can't safely hold him any more.

People can't judge unless they've been there themselves.

[jimjamshaslefttheyurt]

If ds1 is unable to be educated appropriately locally then he will go into residential.

When he reaches adulthood he will go into residential. When he can live a life as independently as possible. Better than being left in the lurch when we eventually kick the bucket. And no doubt more fun than being stuck at home with 2 ancient parents.

[jimjamshaslefttheyurt]

TBH I do see residential care as an option. And if it can provide something better than we can at home, ds1 will go there.

[TopBitch]

That poster did have a point. I am from Malaysia and usually if a person has a disability, it's the family's responsibility to look after that person. Family is very important in some societies and the idea of putting someone in a home is horrifying. In some cases, this option isn't available at all. This applies not only for people with sn, but also to elderly relatives as well.

i find that in really, really desperate cases, the family will put a child in an orphanage. These are the poorest of families though, or those which see no point in having a person with a disability in their family.

When dd is older, she'll probably live either with me or live with a relative in Malaysia.

[madmouse]

when ds was just born and fitting every five minutes and predictions were gloomy I did think as clearly as you 'think' in a situation like that ) 'oh well maybe he will go in a nice home somewhere', anything not to deal with this enormous thing that was crashing into my life.

now the very thought of not seeing holding cuddling him every day makes me feel sick and I have a hard job leaving him with his childminder.

I do not believe anyone chooses residential care out of anything except sheer desperation

[sunnygirl1412]

I have the greatest respect for any parent dealing with these situations, and with the choices that they face - and I would not dream of criticising someone for making the decision they thought best for their child and their family.

I have a friend whose child has behavioural problems, who is sending them to a specialist boarding school. She is really going to hurt when the child goes, but knows it's the best thing for that child - so she's putting her feelings second.

[2shoes]

TopBitch I understand where you are comming from.
but in my case there is no one who would be able to look after her.
it is just me and dh.
and we will not be able to cope when she is a grown up.

[thenewme]

My children do not have physical SN and no, I do not think residential care is a choice. at the thread that upset you 2shoes.

[Davros]

My DS is in an excellent residential school, he started in Jan 08. It was getting hard to cope at home and it wasn't going to get better but that is NOT the reason we did it. It was really because it is good for HIM, the school has much better facilities and space than we have at home and (as Jimjams says) he could no longer be appropriately educated near to home. People are so judgemental and misinformed, and not just "norms" (hate that word) but mostly people with children with SN/disability, e.g. "I could NEVER do that", "I'm the only one who can look after him" blah blah. Mind you, lots of people we know who have children with SN entering their teens have really thought again as they know we are not uncaring idiots and, if we can do it, then maybe it is a real option and NOT the last resort of dumping them. I have helped 3 sets of parents apply to DS's school since January! It is also very dependent on where your child can go and I think DS is at one of the best schools available.
As for families abroad having to look after disabled children because of their heightened sense of the importance of family, it is also likely that services just may not be available or any good AND there are plenty of places where they try all sorts of things on "evil" children who are actually disabled.

[2shoes]

"I could NEVER do that"
oh yes the times I have heard that and the " oh come to us and we will help uou"*say at christmas) and when you get there, you are left doing all the lifting as people sudenly have bad backs.
(nice to see you fio)

[MannyMoeAndJack]

Fact: we won't be able to deal with my ds when he is a grown man. Fact: he will never lead an independent life.

Answer: residential care.

This is the only option for us and the only option for him.

Fact: I could not care less if there are people who frown on residential care.

[TinySocks]

TopBitch: I also come from far away, where family is the most important thing. And I am pretty sure that if I wasn't here one of my siblings would take over.
But in countries like ours, the resources for these sort of residential homes are non-existant. (I don't know about malaysia, sorry if my assumption is not correct).

And I don't know about Malaysia, but in my country middle-class families usually can afford house help, this is not common in the UK. The very poor people are left in limbo.

I think it is wonderful families in the UK have this option.

[2shoes]

"I think it is wonderful families in the UK have this option."

I have to point out that it isn't an "option" it will be a battle.
the given is that once they leave school at 19, they go home. with the occasional day centre. leaving the aging parent with 24.7 care pretty much.
so I do think option is the wrong word.
(not having a did just discussing what to me is a very interesting subject)

[jimjamshaslefttheyurt]

2shoes. I think that is changing.

[Davros]

At least is an option we CAN battle for rather than not being there at all (and we did battle).