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I am actually sick that I can no longer pick up a newspaper without the focus being entirely onthe enormous pressure of carers. I have yet to read one good thing said about Patrick Markcrow in a national rag.

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I agree, it would be good to hear positive stories making the news.

Please don't shoot the messenger :unsure: , I think more articles about the pressure carers may be under can only be a good thing, especially if the cash for support schemes is being used to mend roads !!

If more support was made available then perhaps there would be more positive news to report ?

 

wac

Edited by waccoe

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We can not ignore the fact that people who are carers are often under HUGE amounts of strain. It is very demanding caring for someone 24/7 while our own needs (I can no longer actually remember if I have any needs) come last. It is a fact that Carers often suffer many health problems as a result of their caring. Only it looks like we count for nothing.

 

I apologise if this sounds terrible but it is the way I feel. I do not expect a star spangle banner for caring for my sons and my mum, but I also do not want to be made to feel like the lowest of the low for feeling sorry for a mum driven to despair. Of course I care about her son and what happened to him but there but for the grace of God..............

 

Carole

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That's exactly I how feel Carole,

I'm entitled to a flu jab as main carer for my son, this to me is an admission that I'm indispensable :rolleyes: So surely my mental health is just as important ? The support is needed for the child/adult AND the carer. If I pop my clogs through the sheer stress of caring, then the cost will be far greater than with me around with some support !

Needs ? what are they ? If it doesn't have 'special' in front I'm lost :wacko:

 

wac

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I think it is worth mentioning at this point that the president of Autism Society Canada has been quoted saying to the effect of 'Until the national coverage of the murder of Charles Antoine-Blias by his mother, we were hardly recieving any money, now they are pouring in'.

 

I'm afraid the kind of attention being given here will take Britain down the same road as Canada when it comes to the rights of the disabled. I am not thinking for a minute that all this can 'only be a good thing'.

 

I could tolerate a mother being allowed to walk free after murdering(and she did murder) her disabled son, IF the same kind of empathy could be shown to Autistics or other disabled people put in the dock. It isn't.

 

I could tolerate the attention, coverage and public focus on the needs of carers, if EQUAL efforts are given to portraying disabled(particulary the communication disabled) as people whos needs include the premise of inherent infinite value and worth, just as the carer is.

 

None of this has happened and I'm disgusted that I've yet to even read a letter to the editor defending Patrick Mackcrow's right to live and be free of denigration during and after his life. I'll write one myself in the morning to as many as I can, I doubt ANY will be printed. Patrick's death is a signal flare that's illuminated a previously obscured danger to disabled people; Britain will become like Canada, we are not wanted.

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I agree with you, Lucas :(

 

What value does our society place upon the lives of its most vulnerable members?

 

I have not read one article or letter in the press that expressed any sympathy towards Patrick...in fact, he is hardly mentioned at all other than in terms that make him seem almost subhuman :(

 

I feel that I can't even post my true feelings here, because I am so much in the minority :( This is the first time I have ever felt like this on our forum :(

 

Bid

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Bid,

I haven't read anything at all about Patrick in all of this. Did anyone bother to ask people who knew him about his life ? I doubt it.

I didn't post this article becuase of this particular case, more that I connected with the stories of being a carer.

I don't agree with what his mother did, she might as well have been locked up for the rest of her life because I imagine she is now living her own life sentence every day in her head.

I'm just sad that she saw murdering her son as the only option. What sort of society are we living in if she felt she had to keep everything so private ? I think we all know the answer to that question.

I don't think you are in such a minority,

 

wac

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Hi to all :)

 

Well being a carrer is hard job and being a suffere is even harder specially if you are deny the right to express your need. :(

I found it difficult to draw the line I am at the moment in touch with a young adult with AS and try to advise him but then he seems to get upset that I want to tell him what to do I think as well the expression pb makes it harder for me to get the full picture and for him to understand my point of view fully. :unsure:

 

Lucas could you explain what you consider a good advise and communication for young adult with AS and how we can really help bear in mind that unfortunatly changing this selfish society :devil: is beyond my power even if I would like to so much.

In fact I found as my son grow older less friends are coming around especially the one with boys the same age and I have overheard once at the phone one of the boy saying no I don't want to see H he is weird :tearful: . Just to say that I felt so upset because any way the one who said it is quite weird to me just a fooball adict but I suppose this is the best fit for this society what about the one like my son who cannot and does not play football ??? :oops:

Unfortunatly I am not sure what to do, Sometimes I feel like screaming to them I hope for your sake that you will never know what it is to be different because for sure you would realised how selfish you all are... .. :angry:

 

At least Lucas leave the carer a chance they are the only one who cares may be not so well but we are human too and far from perfection.

 

 

Take care. :)

 

Malika.

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I would bet that if either mother or son had died of natural causes then this would not have even made local news; even though the fact is that if the mother had died the son would have been left without a carer. It is my guess that that scenario is what drove her to do what she did. Nobody knows when they are going to die, I bet she worried about that constantly and was driven to take control over the situation by first killing him then killing herself, which she failed to do. Yes she was driven to despair by the lack of support, but she'd lived with that for all of his life, it was probably fear for his future in her absence that lead her down the route she took. Equally tragic but a different perspective. My heart goes out to both of them in equal amounts.

 

Lauren

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Bid

 

I do (I think) understand where you are coming from, but the subject uder discussion is the provision of care that vulnerable people are unable to provide themselves.

 

This can only be done through carers unless as the artice says the Government makes an additional �57 Billion a year available. I think the article was remiss in not talking about the people who are being looked after, but the central point of the article is a fair one, in that many carers ARE at breaking point and this needs to be recognised at a National level.

 

The overwhelming majority of these carers love and care about the people they care for with a strength and tenacity most of the population will never understand or acknowledge, but I don't think we should shy away from recognising that it can be very very hard, at times overwhelmingly so. And the best way to deliver a better quality of life the the people being cared for is to provide more assistance to carers.

 

Simon

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Whilst I am pleased the pressures on carers are highlighted I feel the same as bid does on this one. I am yet to see any article mentioning Patrick apart from just his name as part of his mothers case. Carers do need more support to stop the desperate measures some have taken over recent years, but it seems they have almost ignored this Man's human rights to a life.

 

They also highlighted the financial implications on carers, a friend of mine mentioned this after reading the article, she pressumed carers allowance was over �100 I have no idea where she obtained this figure.

 

I know he has been portrayed as a challenging self harming violent Man but I am sure they had some nice times, that he had some sort of quality of life. I don't wish to get into an arguement about this of course and maybe its just the media who have showed lack of interest in any story about Patrick, we all know how nasty and insensitive journalists can be.

Edited by lil_me

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My son is profoundly autistic and requires 24 hour care. He left school 16 months ago and we are still battling with social services to provide him with some kind of day care service.

What really irritates me is the emphasis they place on my needs as a carer. My sons needs are never referred to. Its as though they are doing me a huge favour by taking him out for a ride in the mini bus for an hour. If they could provide an appropriate day care service for him it would improve his quality of life and have a knock on effect on mine.

I think to a large extent the issue is historical. As unpalatable as it sounds 10-20 years ago people with learning disabilities were place in large institutions where they lived out their lives. The whole social structure has changed (thank goodness) and children now live with their families. The problem is that the funding,backup, expertise has not been put in place to help these families and they are left to fight for help.

In my area the facilities for the physically disabled are brilliant but those with learning difficulties were cared for by large hospital until its closure a few years ago. However the care that these people would need in the outside world just didnt exist. Due to lack of forward thinking, Care In The Community has been patchy at best and a disaster at worst.

I am an optimist and I believe that things will improve. Strangely while writing this Ive just had a call from SS who are going to take my son to a local activity centre with a view to taking him canoeing. Another little step forward.

Love Lorainexx

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I think the way forward on this is to push for the right to independent living. It really is crucial.

 

As for being a carer, I generally put my own needs first. This was a lesson hard learnt, but someone somewhere likened it to the advice you get about an emergency on an airplane: when the oxygen masks come down, put on your own before going to the aid of someone else.

 

It actually makes me a better carer to do this, raises my status with the rest of the family (who don't see me as a general dog's body, more a general) and allows some kind of fulfillment.

 

Poor Patrick, he didn't deserve to die. Neither should his mother felt that it was a better option. I think they have both been abandoned by a society which does not care.

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As for being a carer, I generally put my own needs first. This was a lesson hard learnt, but someone somewhere likened it to the advice you get about an emergency on an airplane: when the oxygen masks come down, put on your own before going to the aid of someone else.

 

 

Poor Patrick, he didn't deserve to die. Neither should his mother felt that it was a better option. I think they have both been abandoned by a society which does not care.

I agree with this. It is a tragic situation and there is little purpose in taking sides and attempting to decide who is the most/ least deserving of sympathy. This could easily have been a murder + suicide - the mother clearly itended to take her own life. Showing compassion to her is not devaluing her son's life. And I don't see how heaping vitriol on this poor woman's head is going to help a single autistic person get a better deal in life. The needs of carers are inextricably bound up with the needs of those they care for.

 

Let's reserve our anger and energy for trying to change the system and the way society perceives disabled people. As for journalists - they're probably completely ineducable - a lost cause.

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The thing is, if a carer is given support and help, the person with the disability will benefit from that too. If my child goes in respite for the night and I have a good nights sleep and maybe get the chance to socialise with friends, then when she comes home I am better able to cope and she gets my best efforts. She is happy and comfortable in her respite home so I have no worries while she is there and she gets a change of scenery and a chance to be with other people, just as a child without her difficulties would probably sleep over at a friends house.

 

Without that night of respite, especially during school holidays when I don't get a few hours to do things/relax a little, I would very quickly become exhausted. Things I get done e.g. shopping while she is at school would become very difficult as she can't cope with it for long enough for me to get around and buy what we need. Having a shower, having the chance to recover from minor illnesses, being able to cook a meal etc. It is all so much more difficult when I am in my caring role. That leads to nerves becoming frayed, increased tiredness, frustration and, ultimately, the tragedy which has happened with Patrick and his mother.

 

So, Lucas, while there is an emphasis on carers at the moment, it is not to the exclusion of the disabled person, it is for their best interests as well as the carers'.

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Disagree, the focus at the moment is not merely excluding the rights and needs of the disabled person but threatening them.

 

One of the needs of a disabled person is that their carers are able and happy in caring. This is not what is being focused on. This is being focused on as solely the need of the non-disabled carer and not inclusive as a need of a disabled person aswell. A refreshed and coping carer is a need of ours, not a stand-alone need of the carer themselves. We're being portrayed as part of the problem.

 

Well of course disabled people tend to be part of the problem when the problem is erroneously identified to be a carer not recieving adequete support.

 

The problem is NOT that carers are neglected. The problem is that disabled peoples' need for coping carers is being neglected. But there is a powerful invisible lobby in this country that just want disabled people marginalised by placing carers on high pedastals, dulling their senses with egotistical fantasies about being heroes and martyrs so they never understand their role is not to be a hero or martyr but a helper to a person who needs their help. It was the methods of Stalin and Hitler which pioneered switching attention from those they persecuted and re-directing the sympathy towards their keepers.

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Hi Lucas

 

I feel that somehow we are all taken for a ride here :devil: the gov closed the residential care system saying to give more right to the disable while in fact they just wanted to save money :wacko: if they had been sincere the same money could be spend in respite care and day centre activity as well as learning stucture, and support for job for all disables then both disable and carer would have most to benefit from it. B)

Instead they close the residential care kept the money and to keep the carer quiet they tell them how much they apreciate their good work and how amazing they are, most of disable especialy the severely disable are not a problem as they cannot make too much noise :( the other are far too busy struggling to solve the problems in their life to have extra energy to fight the gov, and by making the system so complex the carers are as well kept running around like mad with no time to think and create any agravation. :hypno:

It is sad to say but it is only when there will be so many families affected with those difficulties that the gov will feel the pressure and do something

:angry::wallbash:

In the mean time disabled are not listen to, and carer are kept quiet with some good work but no help, the all thing being agravated by much more restrictions placed on the judicial system (legal aid) and any advising body.

This is the work of the political system giving a voice to the majority and if you are minority.. good luck, may be they will listen when they will really need your vote.

Sorry for being so sarcastic but it was a time when I thought the election system was so good well not when you understand the pbs of a minority, nobody wants to listen to, the solution is trying to raise awarness with the public about the all thing and sad stories like that one may just achieve this. The fact that they do not speak about Patrick from his side is as well because most journalist havn't got a clue about what was his life and his difficuties, it is true that most talk are pushing the negative like "look what this poor thing is doing..." and this is once again show how the system is (not) functionning as if you want any little help you have to show only the negative point :devil: anything positive you feel should be kept secret if not the little support you manage to get for yourself or the one you are caring for will soon disapear. :tearful:

As they said to me some years ago "you are coping very well according to the circonstances I think we will just close your file"... :oops:

 

Silly me who was so reluctant to show anything negative about my children. :tearful::wub:

 

Well Lucas I still would like to know how could be the best way to advice somebody with AS without being patronising... could you help please??

 

Thanks take care.

 

Malika.

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so they never understand their role is not to be a hero or martyr but a helper to a person who needs their help.

 

Lucas

 

You seem to be saying that a carers job is just to put up, shut up and get on with it, and on the way remember to be a little more grateful for all their childs positive attributes, and on no account should they ever imply there are some negative ones.

 

As I have said before, your insights into the world of Autism are invaluable, but you have no experience of being a carer. Carers have the same rights to have their needs met as the person being cared for You say that is is not about the needs of the carer it is about the needs of the disabled person for a refreshed carer. In actual fact it is both. To say that it should only be about the needs of the disabled person is no more intellectually or morally sustainable that it is to say that it is only about the needs of the carer.

 

Mailka,

 

You make some good points, but despite everything that has been said above, most parents of Autistic children want to provide much of the care themselves, and the Autistic person prefers to have the care provided by someone they know well such as a parent. Carers would be enormusly grateful for more backup and assistance when it is needed, but most carers do do an amazing job, in circumstances that can be vary challenging, and it is crass and insensitive of Lucas to suggest that it is the Tactics of Stalin and Hitler to acknowledge the fact.

 

Simon

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Thank you for that wonderful example of selective listening Mossgrove, next time please open your ears all the way. You are not a carer without somebody to care for, so to portray the needs of a carer as a stand-alone issue puts disabled people in a position where they are part of the problem, this same way of thinking cost Charles Antoine-Blias and Patrick Mackroy their lives.

 

Malika, I'm sorry I didn't answer before; I just don't understand exactly what is being asked. I should have mentioned.

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It can be very difficult looking after an aggressive and challenging person. However parents tend to put up with so much more than would be tolerated if a disabled person who is aggressive and challenging were being looked after in some form of residential care. I know of places where those who are aggressive are simply medicated. Believe me this is what happens to some disabled people. Most of us parents would never do that. Generally we put up with far too much because of the great love we have for our children (I also include adult children in this) even when our children are ungrateful and abusive. So if Carers are continually put down and their needs are neglected you may well find many more disabled people being placed in residential care and medicated. You cannot tell someone how to feel and if you are caring for someone who has very challenging behaviour you cannot tell the person caring for them to be grateful. NT people are human beings and not machines.

 

I personally find it VERY challenging looking after children who never realise just how much I am giving. I fully understand that this is part of their condition and accept it. But that does not stop me from being very sad about it :( or angry :angry: when Carers are being told what nasty people we are for daring to say something.

 

There are parents here who fight tooth and nail every day for the rights of their disabled children. But it is NEVER enough.

 

Carole

Edited by carole

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Hi Simon :)

 

I would never say that parents do not want to care for their disable children far from this even under extreme pressure most parents are very reluctant to send their children to residential. :(

I just meant that the gov took the opportunity to reduce the spending without backing up the one who are now doing the big job while the money should have been diverted to give help to the family, of course it is nice to be said that we as carer are amazing :thumbs: (and we are despite what some people want us to believe) but when you feel it is a way of not providing for everybody's needs, carers and cared for, well may be a bit less praise and more action would not be so bad ( mind as far as parent with ASD children are concerned we got it all wrong we are not praised and we receive little or no help. :devil: )

 

As for you Lucas I think you are just reinforcing the gov job ;) by denying the carer to have their needs met for you the only problem to this seems to be that as a consequence the cared for will suffer ( so may be some kind of robot would be more appropriate), I hope you don't really see the probleme this way and can recognized that carers have a right to some form of independance an happiness as much as the cared for, except that in many instances the cared for does not always realised the pressure his carer is under, and cannot speak for his carer needs while the carer will always battle and speak for the one he/she cares for. :wub:

 

The fact that yourself suffer from the problem that people may see you in negative should not make you turn against :angry: the only one who recognised your positive point and really care. You can bring lot of insight :thumbs: and help us to understand where we go wrong I really very much like to have some feed back.

 

Take care.

 

Malika.

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Lucas

 

I do not feel it is me that us guilty of selctive listening. I have made it clear that the carer and the person being cared for both have rights to have their needs catered for , it was you who has concerntrated exclusively on the needs of the person being cared for.

 

Perhaps you would care to read my posts before dismissing them so contemptuously?

 

Simon

Edited by mossgrove

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My disabled child is much-loved, possibly more loved than my other children ( :oops: did I just say that?) because of the very special challenges to achieve things which my other children (even the two year old) do with ease.

 

My greatest fear is that he is not living independently by the time I am unable to care for him, and if I have a purpose in life it is to make darn sure that his needs are met.

 

Other people who do not have this 'very special challenge' in their lives are able to do things like go to work, have a social life, travel to more exotic places than a caravan park in Dorset, invite people into their homes.

 

Life is passing me by. Should it be sufficient reward that my son is happy? Where's my happiness in all this? Does my son's happiness have a greater value than my own?

 

Of course not. But he is the problem. To say that he isn't is naive. He needs care. I give it. In no way are his needs neglected. My needs do get neglected until I make time and space to address them. What is so sinister about that?

 

Ignoring the needs of carers, or saying they are sub-ordinate to the needs of the cared for is inequitable. I would not wish for my needs to be treated more favourably than my son's either.

 

...understand their role is not to be a hero or martyr but a helper to a person who needs their help

 

How come I didn't get to check out the job spec? Why is this vital role valued at �45 a week? This is slave labour, nothing less.

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jaded, I totally agree with all of you have just said, not just agree, relate to it.

 

I constantly neglect myself to care for my children (both the ASD ones AND the NT daughter).

 

People who care about us are constantly telling me that I need to take more care of myself, look after my own needs etc etc. However, it's not that we set out to ignore our own needs, it's just that by the time we've cared for all the needs of our challenging children, we don't have the time, resources, or energy to do anything other than catch up on some sleep (if we're lucky!!!!).

 

The fact is, that most of us as carers are already giving more than 100%, what more can we possibly do?

 

It's our very selflessness with regard to our children that we are defending; and the core of that is that our autistic children's needs are being met by us resulting in our own needs being ignored. So for anyone to suggest that the carers are getting all the sympathy, then if that is the case why the hell not?? We are the ones who are giving, many of us 24/7.

 

Lauren

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I did read everything you said Mossgrove and now others have repeated the same disgusting utilitarian dogma. You did however confirm that whilst you listened to what I said, you didn't at all hear it.

 

I'm sorry I and others like me are such a ungrateful burdens and cause problems. Keep moaning about the wrongs whilst you so eagerly promote the attitudes that created them.

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Lucas

 

Sadly you have once again resorted to cheap invective rather than engaging with the argument.

 

It seems we will have agree to disagree as you are unwilling to acknowledge that carers are people too. We have strengths, weaknesses, hopes, fears and ambitions for the future in exactly the same way as those we care for. A good carer will find a balance between the two.

 

You may dismiss my argument as utilitariam dogma, but the alternative is to assume that a carer should waive all rights to self-determination at the point of becoming a carer which isn't the answer either.

 

Ensuring that the needs of carers and the cared for are kept in balance provides a way forward. I am still unsure whether you feel a carer has any rights at all unless the relate directly to the provision of care.

 

Simon

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I don't want to argue or be part of any trouble. But I have to say Lucas, that while we are all entitled to our opinion, you are making out that between the carers and the cared for, there is a them and us situation. Let me tell you, that as far as I'm concerned, and I'm sure others will agree, that nothing could be further from the truth. I have two boys with ASD and nobody on this planet is more on their side than I am. There is nobody else on this planet who will fight for them, care for them, love them, appreciate them than I do. I'm sorry Lucas, but your attitude is insulting to the parents and carers on this forum who all are here because they want the best for their children.

 

Lauren

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Not sure if I should be posting in this topic or if what I am about to say has any relevance but any way hear goes;

I do not have a child with a disability; I have a girlfriend who I chose to be with. I can leave at any time. I choose not to. I love her and yes I guess I am her carer and if I was offered help I would take it as it is hard work but so what! I love her and that?s all that matters. What ever this world throws at us we will fight through it, together. I?m sure a lot of you will agree your parents / guardians first and carers second. My girlfriend is not an inconvenience, yes sometimes she can cause a problem or be a pain but so can every �normal� (hate that word) person.

Sorry if all that was out of context of this thread!

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Oh Hell -

I really dislike threads like this one, because while on the bigger picture everybody's in agreement, the details are so personal, so complex and so emotional, that it deteroirates into something else...

If I did have to throw my hat into the ring, I'd have to say that for the most part I'm with Lucas and bid on this one...

This boys life should NOT be allowed to become a footnote in his mother's story. That would be a gross injustice...

I agree wholeheartedly that this tragedy underlines graphically the pressure carers are subjected to, and the mother is totally deserving of a compassionate, enlightened and merciful response to actions she took in extreme emotional and psychological distress.

The thing I can't agree with, can't accept, is the apparent focus on the son as the CAUSE of this tragedy, as if he is somehow to blame for what is fundamentally a social failing and injustice. As has already been pointed out, the media focus has concentrated almost exclusively on how his mother was let down by the system... Excuse my (self moderated) french - but that's b*****ks. It was the son who was let down by the system, and he paid for that with the loss of his life. His mother also bears that cost, both in terms of the loss of her son, and the lifelong sentence she will undoubtedly serve - regardless of any court judgement - because of her part in his death.

One thing I would ask every parent to consider is the implications of newspaper coverage that allows the son to be sub-humanised, devalued, and portrayed in such a blanket, negative way. Others may look at OUR children through the same lenses...I for one don't see any disabled person that way, and i have spent many years - both before and following Ben's dx - arguing against prejudices that do....

 

Apologies for soapboxing/sermonising/oversimplifying, but I needed to get that off my chest. If I've offended anyone, I'm sorry...

If i look at this again tomorrow, I'll probably realise that what I wanted to say got lost in translation, or at the very least got said badly... In a nutshell, my main point is that we shouldn't allow anyones life to become a footnote. We are all far too valuable for that.

L&P

BD

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Baddad

 

Thanks for that - you've summarised the issues so clearly, and I have to agree with what you've said. I am ashamed to realise that I had failed to pick up the point about the dehumanising of Patrick, and the failure of the system to meet his needs (as opposed to his mother's).

 

The needs of carer and cared for appear to have been put into opposing corners in this debate - but clearly that's wrong. Both sets of needs have to be dealt with - and this tragic case is the result of failure to meet either. There's always a danger of emotion allowing us to polarise our views - particularly when the forum has contributions from those who are carers and also people who need some degree of care. Thanks for putting some balance into the debate.

 

Elanor

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I shall add no more to this thread other than to say that, from my perspective, this thread should never have been about whether the child or the parent was let down, the family was let down by the system. I am still uncomfortable with the notion that acknowledging the needs of carers is dehumanizing the child, but I have to respect those of you who see it in those terms.

 

Going to bed now!

 

Simon

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Hi

 

Ive been reading this thread, but not wanting to add a reply in case I upset anyone.

Thanks baddad for putting it so clearly, none of us are on opposite sides of the fence we are all on the same side and like DAS999 said we are parents first and foremost, but still need some support sometimes as do our children.

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