tonight BBC 1 When Mothers Love Is Not Enough

[lorryw]

I caught a glimpse of this on breakfast TV and thought it may be of some interest. One of the families featured have a 17 year son with asd who is not getting the services he should. I think it will be very difficult to watch but it seems to draw attention to the lack of help and care available to families struggling to care for children with disabilities.

I have just read an article by the programmes producer (who has a daughter with downs). She commented on the fact that the families she visited all had large files containing letters from those who should help but never do.

[JsMum]

 

 

 

I watched the BBC new this morning too, it was upsetting just from the few mins they showed, the little girl with a undiagnosed brain disorder her mother got so distressed she attempted suicide, it is going to be a very difficult documentary to watch, the new coverage went into how some parents are pushed to the point of no return, it is on late too, 10:35pm so might record it and watch it during the day, as it may keep me awake.

 

I think it is going to be a very painful documentary so be careful I cried this morning just with a few mins, I will try and watch it though because it is going to hit nerves we all here experience.

 

I have no daughts others will be returning to this OP later on in the evening.

 

JsMumxxxx

 

[Paula]

Ive set the sky plussed it and will watch it tommorrow........................thanks for the reminder.

[justine1]

Someone from my course said there is also a programme on Autism on More4 I believe on Saturday,I will try confirm this,or someone else may correct me if I am wrong.

[JeanneA]

Hi I will check both these programmes out, set up my sky plus for tonight!

[A and A]

Someone from my course said there is also a programme on Autism on More4 I believe on Saturday,I will try confirm this,or someone else may correct me if I am wrong.

 

would it be this one??

 

7:25pm on More4

 

125 mins

 

This double Emmy-winning film, part of the More4 Arts season, follows one woman's pledge to lead a group of autistic children to write, rehearse and perform their own full-length musical.

 

 

[mygifts1306]

I am watching this programme, very touching...

[Mumble]

I thought it was generally excellent. I hope that 'outsiders' take note of the comments at the end. I found the abuse these families get disgusting.

 

I found some of the sections on siblings hardest to watch. I don't have the same sense of needing to care or be responsible for my brother - perhaps that's being AS myself, because I know my sister does have that partly for my brother and also for me. It made me feel guilty that my sister might be feeling that way and also that she hasn't had any normal sibling relationships growing up.

 

The only thing I found really difficult about the programme was the portrayal of AS and autism. Both of these cases appeared to me to focus on the violence as a major feature of ASDs. As far as I'm aware, violence isn't part of the dx criteria and occurs as a reaction to aspects of the ASD rather than because of. Certainly in the case of the boy with AS, he appeared to me to be self-harming which was allowed to escalate and be seen as violence rather than for the original behaviour it actually was. Violence was being labelled as a behaviour where actually what was happening wasn't violence in and of itself - I hope I'm making some sense here. I'm concerned that people watching this without a better understanding of ASDs will take away the message that ASD = violence. We have enough poor stereotypes without this.

 

[justine1]

I was crying I was just relieved that other people feel the same.I was grateful that these mothers could be so very honest.I used to be horrified that mothers could kill their children I always thought "who do you think you are taking a life" that was until 20 months ago when I found myself looking after three kids alone and expecting a fourth.It is so stressful and draining to look after kids all on your own,I cannot imagine the difficulties the mother with the 12 yr old who has cerebal palsy must go through,and her other son seems to be taking on the role of "dad" I felt so sad for him.The mother I really cried for was the mum of the little girl who has an unknown brain condition,the crying oh my goodness,the poor women!She wants to communicate with her little girl and she cant.The story she told of how she wanted to end her life was terrible.I always say we are very fortunate to live in a country where children do generally get alot of help and support regardless of their disabilitys,where I grew up many children are abandoned at birth and raised in institutions never getting any type of education.However I do believe that the government need to stop spending money unnecessarily and focus on the children and familys like in the story.I am now so grateful for what I have and even feel guilty for complaining about my situation!

[trekster]

http://www.bbc.co.uk/iplayer/episode/b00nt..._is_Not_Enough/

If you missed it watching on I player at the moment

[Paula]

Ive just watched the programme this morning....................so so very brave of these mothers to be so utterly honest about things i for one have often fealt but wouldnt dare speak of for fear of judgement.I no longer feal alone in thinking these things at my lowest moments.

 

 

 

I fealt in the case of the asperger lad that he was getting upset over the fact he wanted to be the "cute loveable nice baby /toddler " he was once thought of by his parents which was kinda enforced by them as he watched old videos of himself.My son now 15 is become more self aware that hes different and embareeses his sister something she constantly tells him ............... i tell her of but shes 17 and a paine.............a few days ago my son out of the blue said to his sister you should try being in my shoes its not easy..............and then went back to playing xbox..........a small insight into his inner mind and one that made me a little upset.

 

 

 

I thought david cameron spoke brilianlty over his son ivan and you could realy see he was genuinly emotional and it came from the heart................and i thought it was good that he made a point of saying he realised he was lucky to have money and the resources to get in help ect and others didnt.

 

 

I cried a heck of a lot my heart went out to the parents,the siblings and the kids............and i realised that ive not got it too bad theres people in a worse position than me. <'> <'>

[JsMum]

I cried too, felt rather sick and unwell when the mother who has the little girl with the brain disorder that she wanted to kill herself, I guess because it brought back personal issues for me, she was indeed very brave and very honest and in no daught her story may well of well saved some other mother going throw the same plight, I couldnt believe that the mum didnt get any respite too, and only after the programme had been given 10hrs OT and referred finally to GOShospital.

 

It is no wonder she brokedown, no one on this planet could cope with what she had to deal without a break, her story made me feel very privilidged for the bond with J which I always know I have, but this programme just made me realise just how much more J interacts with me than her little girl, I find my life already a real struggle so she has done amazing, it was very inspiring but soo sad at the same time.

 

The boy who cared full time for his older brother again upset me too, especially when the kids in his neighbourhood yelled abuse at him, he soo much needs to be an ordinary kid but no one is letting him, his mother depends on him sooo much, she would struggle so much more without him, yet he is missing out on his presious childhood too, its a very distressing sacrifice but he is a wondeful human being, caring, sensitive and loving, what a lovely lad he is and his mum fighting for Nappys was disgusting, she has to write down his input and output, that is totally degrading.

 

The teenager who had Aspergers Syndrome upset me because the Father said he couldnt contemplate residential school, for our family we had no choice otherwise my sons future would be very bleek, for us residential has given both of us our lives back and J has a much better future prospect and our relationship has improved too and he has access to proffessionals who can deal positivily with his Aggression and anger, he is finally recieving Anger Management for example, when J was in mainstream I was seeing a private clinical child psychiatrist for a five week intensive course as an emergancy because he had become soo violent I was contemplating placing J in care, but I wanted him to recieve support not just crappy LAC accomadation, where he would probably become worse stuck in a system that doesnt support them so I payed privately as the waiting list for play therapy was over 18months long, we wouldnt of survived another day without any intensive support.

 

So in a way residential school has ensured he has accessed other therapies J needs including his Speech and Language Therapy, and accessess a variety of activities, yesterday he went horse riding for example.

 

I was hurt by the Father because he was suggesting parents who do contemplate residential school cant really care about them, which is obvously not the case for us.

 

The boy needs some proffessional support, my betting is all the psychiatrist will do is place him on some psychotropic medication when what he requires is a therputic enviroement where he can access a range of therapies.

 

Adult mental health is ###### for AS they wont help him, thats my honest opinion.

 

So by the end of the programme I just got angry at both parents and the system, Obvously more towards the system, what the documentary did for me though is made me see that Im not the only one they have let down, they have many others and families clearly with a lot more care needs than my sons, however I still do require support for us to not need increasingly more support in the future, as it always seems the case, let things get to a crisis point before the SS act.

 

It was a very difficult documentary to watch and it stays on your mind doesnt it.

 

JsMumxxxx

Edited November 11, 2009 by JsMum

[lorryw]

I found it very difficult to watch and my husband had to leave the room. My heart went out to all those parents and I recognised bits of my self in all of them. We are wrestling with the prospect of our 24 year old going to live in a care home. The guilt and pain is overwhelming at the moment, but I felt humbled by the strength of those parents who were able to face a camera and talk about how they felt.

[Paula]

Haveing to fight for the nappies was disgusting................but hey theyd given her 6 a day now.................big wow ..............its utterly dispicable..........what happens if he uses 7 or more does he have to lie in a soiled one..............i was gobsmacked that this thing is going on ..............

 

 

 

I thought david cameran made a valid point when he said parents should have a kinda pass thingy that meant they woulodnt have to keep answering the same old questions over and over againe to get whats due to them whilst careing for a child that once theyd been assessed once that was it.................makes you wonder if he gained power weather hed put some of his ideas based on his own experiances into practice.........the realy cynical bit of me thinks he wouldnt........but i hope id be wrong.

 

I think the programme went out too late and should have gone out earlier and been more publised i doubt many people watched it unless theyd an interest due to being in the same situation and therefore kinda knew how rotton it can all be and the fight we have to get help..............we realy need people who havent a clue to have watched it..............

[MelowMeldrew]

I cried too, felt rather sick and unwell when the mother who has the little girl with the brain disorder that she wanted to kill herself, I guess because it brought back personal issues for me, she was indeed very brave and very honest and in no daught her story may well of well saved some other mother going throw the same plight, I couldnt believe that the mum didnt get any respite too, and only after the programme had been given 10hrs OT and referred finally to GOShospital.

 

It is no wonder she brokedown, no one on this planet could cope with what she had to deal without a break, her story made me feel very privilidged for the bond with J which I always know I have, but this programme just made me realise just how much more J interacts with me than her little girl, I find my life already a real struggle so she has done amazing, it was very inspiring but soo sad at the same time.

 

The boy who cared full time for his older brother again upset me too, especially when the kids in his neighbourhood yelled abuse at him, he soo much needs to be an ordinary kid but no one is letting him, his mother depends on him sooo much, she would struggle so much more without him, yet he is missing out on his presious childhood too, its a very distressing sacrifice but he is a wondeful human being, caring, sensitive and loving, what a lovely lad he is and his mum fighting for Nappys was disgusting, she has to write down his input and output, that is totally degrading.

 

The teenager who had Aspergers Syndrome upset me because the Father said he couldnt contemplate residential school, for our family we had no choice otherwise my sons future would be very bleek, for us residential has given both of us our lives back and J has a much better future prospect and our relationship has improved too and he has access to proffessionals who can deal positivily with his Aggression and anger, he is finally recieving Anger Management for example, when J was in mainstream I was seeing a private clinical child psychiatrist for a five week intensive course as an emergancy because he had become soo violent I was contemplating placing J in care, but I wanted him to recieve support not just crappy LAC accomadation, where he would probably become worse stuck in a system that doesnt support them so I payed privately as the waiting list for play therapy was over 18months long, we wouldnt of survived another day without any intensive support.

 

So in a way residential school has ensured he has accessed other therapies J needs including his Speech and Language Therapy, and accessess a variety of activities, yesterday he went horse riding for example.

 

I was hurt by the Father because he was suggesting parents who do contemplate residential school cant really care about them, which is obvously not the case for us.

 

The boy needs some proffessional support, my betting is all the psychiatrist will do is place him on some psychotropic medication when what he requires is a therputic enviroement where he can access a range of therapies.

 

Adult mental health is ###### for AS they wont help him, thats my honest opinion.

 

So by the end of the programme I just got angry at both parents and the system, Obvously more towards the system, what the documentary did for me though is made me see that Im not the only one they have let down, they have many others and families clearly with a lot more care needs than my sons, however I still do require support for us to not need increasingly more support in the future, as it always seems the case, let things get to a crisis point before the SS act.

 

It was a very difficult documentary to watch and it stays on your mind doesnt it.

 

JsMumxxxx

 

 

I thought the fact that at some point for parent/s of autistics, residential is an only way of supporting the child effectively, this was echoed by the woman who did the program in that a number of parents obviously at breaking point still dug in, and refused to accept this may be the only way, albeit mostly because they carry guilt, which is not theirs anyway, and the fact people outside the autistic area are cruel, and unforgiving, even your own family can be like that. As we none of us want to be seen as parental failures, we drive ourselves into the ground to prove a point ? Going on until you crack is no use to you, or your child. It is knowing at which point that decision has to be taken. Mostly it is not a decision we have to take because there is nowhere for these children to go, that is the main issue. At schools level is where the work HAS to be done, it has to be set up there for the future, but I still find schools doing one thing and parents haven't to struggle doing something else. Autistic schools develop regimes honed over years of dealing with a variety of levels of autism from the quiet and uncommunicative autistic to the violent ones, only by these strict regimes can the school function. If the child devlops m,ulti-obsessions at home,you can be greeted by "Oh he never does nothing like that at school.." which immediately undermines what you do, if you persist, they say ignore what he or she does, chance would be a fine thing !

 

In part it hones the autistic child to that sort of set up, who can then arrive home where choices are more, options are wider, regimes a little less strict, we want our kids to be themselves don't we, and in many cases they aren't the only child in the house despite demanding all your time. The conflict occurs because the regimented autistic cannot then function effectively at the home. We may disagree on what level of bending to the autistics demand for a place for everything and everything in its place... or else ! we weren't encouraged to read that after 18 you are back to square one again,"not our responsibility' etc from the system, which has up to now not accepted much anyway ! As one parents stated they get older so do we, but they get stronger, we don't !

 

I don't just see myself as a carer, I am his father. I don't want to be a home help to my own son.... Sad for the mum's filmed but, let's hear it for some Dad's too, I've spent my entire time since my son was born attending to his need and supporting him and Mum, who is not able in many respects to do that due to being ill herself, not ONCE did anyone ask "Is Dad managing OK ?"... If they are like me, they go away to a quiet room once in a while and shed tears, then come back and do the best you can, because, that's all there is, and few men are going to admit they cannot bring up his own son.... If we show signs of cracking, then the game is up.... I don't really worry what will happen if I struggle, I only worry how he is going to manage if I do and cannot get relief from that. To have him say just once "I am going out to play.." would make his entire life, and our love and support totally worthwhile, it is worthwhile in that these kids teach us so much about love and caring for others, things many women say Dad's just aren't capable of. It would be a very tough Dad indeed that would go on a TV screen and break into tears, we don't do it, tears don't solve problems, actions do..

 

I wouldn't change my kid for anything, but I get tired too. To some, it's incredible a child can be like that, they just do not know, and neighbours, kids on the street just think you are someone to abuse all the time. The people with a 'nutcase' down the road.... I've moved twice already to protect my son from peer abuse, so I was angry at seeing the woman and her non-disabled child get it by proxy, what sort of parents have these kids got ? certainly nowhere on par to the loving and very caring parents we see and read here.

Edited November 11, 2009 by MelowMeldrew

[lisac]

MelowMeldrew , sadly you are in the minority. More dads/men need to speak up , x

[Tally]

I'm not really sure how I feel about this. These parents are working so hard to get the right support, but still not getting it. At the end when they talked about some of the progress the families had made, I suspect that had only happened because the programme makers allowed them access to advocates who many people can't access.

 

So many of the siblings felt a huge burden of responsibility, even when the parents made it clear that they did not need to. My brother wants to live abroad. I would hate for him to change his plans because of me, yet I also kind of need him to.

 

I didn't like the way autism was linked with violence, and worry what people might think about me if this is the only thing they know about autism. But at the same time, this was the reality for the families featured in the programme, so it wouldn't have been right to do it differently.

 

The 18-year-old with Asperger's was clearly struggling and was embarrassed about the way he behaved. At the end he was saying to his dad that he wanted to change, but he clearly needs the right support to do that.

[szxmum]

Just finished watching this on IPlayer - hard going but it did help me to see other Mums stating openly how they felt. It is good (?) to see it out in the open.

 

The programme brought it home to me that to all intents and purposes I may as well be a single Mum going through this - dh has attended two appointments with me. All the telephone calls, letters, emails, appointments and paperwork has fallen to me. All ds's day-to-day care falls to me. Planning ds's present and future falls to me. Dh is in denial. My own Mum and brother don't want to know. The number of times I have heard from my hubbie and family - it's not that bad, there are people worse off out there (yes there are, ds will never be classed as having high level needs and that brings a whole host of problems of its own) , the professionals should sort this, social services should sort this - errr no, that'll be me. I really am on my own with this - how can my family ignore and deny this - no wonder I am emotionally exhausted, depressed and burnt out.

 

Oops that tuned into a bit of a rant - back to the programme - it's always good to know you are not alone.

 

Szxmumxxx

 

 

[bikemad]

Just finished watching this on IPlayer - hard going but it did help me to see other Mums stating openly how they felt. It is good (?) to see it out in the open.

 

The programme brought it home to me that to all intents and purposes I may as well be a single Mum going through this - dh has attended two appointments with me. All the telephone calls, letters, emails, appointments and paperwork has fallen to me. All ds's day-to-day care falls to me. Planning ds's present and future falls to me. Dh is in denial. My own Mum and brother don't want to know. The number of times I have heard from my hubbie and family - it's not that bad, there are people worse off out there (yes there are, ds will never be classed as having high level needs and that brings a whole host of problems of its own) , the professionals should sort this, social services should sort this - errr no, that'll be me. I really am on my own with this - how can my family ignore and deny this - no wonder I am emotionally exhausted, depressed and burnt out.

 

Oops that tuned into a bit of a rant - back to the programme - it's always good to know you are not alone.

 

Szxmumxxx

 

O my god I could have written that myself.......I watched this on iplayer n yup antoher who cried n the lad with aspergers was like watching my lad at times. And dp turned round n said 'others are worse you got it easy'...could have killed him tbh!!!!!!

 

[Mumble]

So many of the siblings felt a huge burden of responsibility, even when the parents made it clear that they did not need to. My brother wants to live abroad. I would hate for him to change his plans because of me, yet I also kind of need him to.

I'm in exactly the same situation with my sister. She wants to go abroad for part of her post-grad studies then work abroad. I'm terrified of this because she does so much for me and provides so much subtle support that others don't see but I could never allow myself to limit her life. I feel that she's already had to put up with so much both with me and my brother that she needs the opportunity to create her own identity separate of us. It feels wrong to me that I'm even thinking of wanting her here because she's the little sister (by a long way). I should be looking after her and preparing her for the world, not the other way around.

 

 

David Cameron talked about the model for support in Austria and Denmark whereby they essentially have a one stop shop for all the different supports following dx. Why is no-one in Government here seriously questioning why we don't have this? Are they that clueless as to what it going on? Surely it would save millions in wasted bureaucracy to have such a system in place and that money could be ploughed back into helping the people who most need the help.

 

[chris54]

I don't just see myself as a carer, I am his father. I don't want to be a home help to my own son.... Sad for the mum's filmed but, let's hear it for some Dad's too, I've spent my entire time since my son was born attending to his need and supporting him and Mum, who is not able in many respects to do that due to being ill herself, not ONCE did anyone ask "Is Dad managing OK ?"... If they are like me, they go away to a quiet room once in a while and shed tears, then come back and do the best you can, because, that's all there is, and few men are going to admit they cannot bring up his own son.... If we show signs of cracking, then the game is up.... I don't really worry what will happen if I struggle, I only worry how he is going to manage if I do and cannot get relief from that. To have him say just once "I am going out to play.." would make his entire life, and our love and support totally worthwhile, it is worthwhile in that these kids teach us so much about love and caring for others, things many women say Dad's just aren't capable of. It would be a very tough Dad indeed that would go on a TV screen and break into tears, we don't do it, tears don't solve problems, actions do..

I could have written that.

Few people really believe you when you say you are your child's main/sole carer. That you are, have always been the one to do everything for your child, the one that got up in the night, bathed, dressed, fed, oh yes and change nappys. Well yes dads do that but they are only playing at it aren't they. Well no, I do it for real, only had 6 days(and nights) off in the last 9 years.

I could go on, but.

And yes I do feel, have been discriminated against for being male.

Well I'm going off at a tangent.

Have not had time to see the program yet so cant comment on it.

 

[trekster]

Hello

 

Wasn't the 17 year old tourettic? Im surprised it wasnt mentioned in the program since stress can cause the tics not autistic behaviour.

 

Alexis

[Paula]

I want to speak up for dads too who as the poster suggested often get forgotten about as all the focus goes onto the mum.

 

 

Yes im the main carer for my son,im the one who deals with the school all the drs all the appointments all the hospitals,baths ,dresses him deals with the tantrums ect ect ect................

 

 

Thing is im able to do all this because im a stay at home mother who since my son was born................he was born with bi lateral choanal atresia and needed round the clock care and had numerous unsucessfull operations then we realised hed aspergers...............hasnt done a single days paide work.........i can do all this because my husband works bloomeing hard and is the sole earner........ all that responsabilitys on his shoulders...............he was the one who would still be woken in the middle of the night..........night after night...........even if it was ultimatley me who would get out of bed to deal with things.............and still hed get up sometimes at 4 am to go to work and work a 12 hour shift utterly wrecked whilst i could in some peoples eyes take it easier at home .

 

 

Mums may do at times the bulk of the daily care and school stuff...............but its a hell of a lot easier to do this with the support of a good man and excellent father.............evreryones role is important.

 

 

 

I also thought the asperger lad featured in the programme had feautures of tourettes.

Edited November 12, 2009 by Paula

[Sally44]

Hello

 

Wasn't the 17 year old tourettic? Im surprised it wasnt mentioned in the program since stress can cause the tics not autistic behaviour.

 

Alexis

 

I also thought it looked like tourettes. And he obviously did not want to say those words. That seemed to make him want to return to his childhood, to a time when he was 'cute' and everyone liked him.

[MelowMeldrew]

I could have written that.

Few people really believe you when you say you are your child's main/sole carer. That you are, have always been the one to do everything for your child, the one that got up in the night, bathed, dressed, fed, oh yes and change nappys. Well yes dads do that but they are only playing at it aren't they. Well no, I do it for real, only had 6 days(and nights) off in the last 9 years.

I could go on, but.

And yes I do feel, have been discriminated against for being male.

Well I'm going off at a tangent.

Have not had time to see the program yet so cant comment on it.

 

 

I still do not see myself as a carer, I am his father first, and whatever I can provide is part of being a father. I Often think that the term 'carer' is second hand a title, there is no glamour to it ! It seems a 'remote' title, it also does not identify the child is yours, and the care you provide is some sort of 'job'. Most correspondences I get are addressed to Mum, when they go to meetings they talk as if I am not there, how is mum coping ? they either do not read the notes they have which clearly id I do near all the caring, because MUm's health is a real issue, and I care for her too, or they choose to ignore it, and they are ALL women ! Anyway (!) I've been a 'carer' for many many years, looking after two terminally ill parents until they died, one with 3 forms of cancer, I've washed my mothers under-clothes, changed blood-soaked bed linen because she hemorrhaged a lot, cooked all the food, arranged and picked up all the medications, hospital visits, taken her shopping in wheelchairs, on short holidays....etc, and looked after my father with a wasting lung disease. Sons/Dad's we do our bit, and like others got no recognition whatever, I don't want blinkin fame, just an acceptance I am doing my bit. They would not even give me an allowance for caring when my parents were ill, they said "A man cannot be a carer, it is a woman's role...", my mother was a difficult person to care for and would not allow nurses into her home, or stay in hospitals, I lost many jobs as I had to take time off, the DWP harassed me to put my parents in a home, and I wouldn't do it, my sister offered to look after my mum when I had to go on a short course for my work, she got paid an allowance in 36 hours, and she only did it for 18 days, I did 12 years.... I was fighting the DWP for an allowance when I was unable to work.... I Met total opposition. Men were treated appalling, it is not that we don't care, we weren't allowed to, no wonder the situation is still men won't teach in schools, won't become nurses, won't become social workers, or paid carers, etc, it's too much hassle and suspicion thrown at us, then men can get called 'uncaring' and leaving women to do it all, we are never going to win. Role reversal doesn't really work because women often prefer to go their own way. It's a sign of the times, there is no desire for 'Mum and Dad' and for life anymore.

[justine1]

I still do not see myself as a carer, I am his father first, and whatever I can provide is part of being a father. I Often think that the term 'carer' is second hand a title, there is no glamour to it ! It seems a 'remote' title, it also does not identify the child is yours, and the care you provide is some sort of 'job'. Most correspondences I get are addressed to Mum, when they go to meetings they talk as if I am not there, how is mum coping ? they either do not read the notes they have which clearly id I do near all the caring, because MUm's health is a real issue, and I care for her too, or they choose to ignore it, and they are ALL women ! Anyway (!) I've been a 'carer' for many many years, looking after two terminally ill parents until they died, one with 3 forms of cancer, I've washed my mothers under-clothes, changed blood-soaked bed linen because she hemorrhaged a lot, cooked all the food, arranged and picked up all the medications, hospital visits, taken her shopping in wheelchairs, on short holidays....etc, and looked after my father with a wasting lung disease. Sons/Dad's we do our bit, and like others got no recognition whatever, I don't want blinkin fame, just an acceptance I am doing my bit. They would not even give me an allowance for caring when my parents were ill, they said "A man cannot be a carer, it is a woman's role...", my mother was a difficult person to care for and would not allow nurses into her home, or stay in hospitals, I lost many jobs as I had to take time off, the DWP harassed me to put my parents in a home, and I wouldn't do it, my sister offered to look after my mum when I had to go on a short course for my work, she got paid an allowance in 36 hours, and she only did it for 18 days, I did 12 years.... I was fighting the DWP for an allowance when I was unable to work.... I Met total opposition. Men were treated appalling, it is not that we don't care, we weren't allowed to, no wonder the situation is still men won't teach in schools, won't become nurses, won't become social workers, or paid carers, etc, it's too much hassle and suspicion thrown at us, then men can get called 'uncaring' and leaving women to do it all, we are never going to win. Role reversal doesn't really work because women often prefer to go their own way. It's a sign of the times, there is no desire for 'Mum and Dad' and for life anymore.

 

Your post has really saddend me,not your fault but society.I just finished a care course which spoke of this very descrimination you talk of,its absolutley disgusting,it is more so in that people dont seem to realise carers like yourself save the government £56 million every year!!!Good on you for caring for your parents,I know that must be so hard and many people cant do this (nothing against them because it is hard when you have other commitments.)I realise you must have given up alot to do this. I also wanted to say about the residential care for AS kids,I also dont really like the idea,and cry at the thought of it,but now I am actually considering it,it is a place where my son could probably develop more as an individual instead of relying on me and his older brother,I also think it will be more routine and structure which he thrives on.He is six and I have seen a lovely residential school for 7-16 yr olds,I do fear it will look like I am throwing him away,or trying to make my life easier and worry how he will react later when he is older,like say why did you care for my brothers and left me,but I think whatever I chose to do it should be my choice and nobody should critisize it,I do feel for parents who have had to make the decision.Seems like your damned if you do damned if you dont!

Edited November 12, 2009 by justine1

[MelowMeldrew]

Your post has really saddend me,not your fault but society.I just finished a care course which spoke of this very descrimination you talk of,its absolutley disgusting,it is more so in that people dont seem to realise carers like yourself save the government £56 million every year!!!Good on you for caring for your parents,I know that must be so hard and many people cant do this (nothing against them because it is hard when you have other commitments.)I realise you must have given up alot to do this. I also wanted to say about the residential care for AS kids,I also dont really like the idea,and cry at the thought of it,but now I am actually considering it,it is a place where my son could probably develop more as an individual instead of relying on me and his older brother,I also think it will be more routine and structure which he thrives on.He is six and I have seen a lovely residential school for 7-16 yr olds,I do fear it will look like I am throwing him away,or trying to make my life easier and worry how he will react later when he is older,like say why did you care for my brothers and left me,but I think whatever I chose to do it should be my choice and nobody should critisize it,I do feel for parents who have had to make the decision.Seems like your damned if you do damned if you dont!

 

we carry guilt, and there is no need at all to do that, it is the way the cards fall, in the respect of my son, it came up trumps, I am actually more concerned how I will cope if a decision is made for the residential option than for him. Many autistics as is their way, may enjoy being apart from the family, I remember they covered 4 autistics recently on TV and one lad was really looking forward to being away from the family, it is no reflection on how you approach the child, they just need a space we cannot give them. My son shows signs of not wanting us to include him in anything at all, and says "I don't want to mix with other people, I won't do it, and don't make me go there (inclusive play and support areas).." We in turn are desperately responding to a 'need' which increasingly is showing me, is our and society's need, NOT his. They don't want to be a part of it... end of. I ask myself at times, why go through the motions of encouraging his inclusivity in 'society' ? it is not what he wants, then I would face the system that says we aren't trying and have him residential where he is LESS included than he otherwise would be.. out of sight, out of mind...

Edited November 12, 2009 by MelowMeldrew