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a mothers love is not enough tv programme
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hi my name is paula i am 41 yrs old and i am a parent carer well i was until i sadly lost my daughter in april 2007, i have just watched the above tv programme and sat and sobbed my heart out , as a parent odfa child with severe disabilities i totally understood where all these parents were coming from and totally understood their siuations , my daughter was multiple both physical and mental needs with severe behaviour proboems and 24 hr care i aslo have other children whom i neeed to care for .
since the sad loss of my daughter i helped set up a service with my friend supporting parents in our borough to get then all the help they need before it gets to breaking point as it did for me in the past i got the help eventually but it came to late so i will spend my time making sure its not to late for other parents as it was for us ,, luckily for us we had alot of happy times before the lord came and took her away but in past years i got into the same situations of breaking points as the parents you saw tonight .my heart goes out to all parent carers out there who do an absolutley fantastic job looking after their sons or daighters with a disability x God Bless You All xx -
Thank you Rosa. For years I've played the 'everything is fine' game with everyone, including myself. Now I am off work with anxiety and depression. We need to stop the super-mum myth. We are just parents, poorly supported, doing our best. But we are tired, struggling to cope and with little or nothing to look forward to. My reaction when I hear of tragic deaths of disabled children at the hand of a parent is suprise that it doesnt happen more often. I love my boy, but it is so hard. Keep up the good work Rosa and thank you for this brave programme.
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I'd also like to thank Rosa for a well balanced programme which seemed to serve in part as a highlight for the ridiculous situations we treat as absolutely normal.
It's been many years since I've been able to look objectionably at my family lfestyle from an outside perspective, but this show helped me see my own life through someone elses eyes.
To be honest it's pretty bleak. I also find it quiet painful to realize that our families distance themselves from us rather than help, and angry that we (all of us not just my family) seem to spend so much time fighting a system that, far from making a stressful situation easier, just makes a desperate situation worse.
Better stop writing before I get tearful again.This is a reply to this message.
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This is my first time doing this so I hope I'm doing the right thing! I came home after a lovely evening out last night and watched the programme and also found it amazing. I thought it raised the profile of those of us with disabled children and was a brilliant overview of the things we come up against. My daughter is 9 and is profoundly disabled. I love her to bits and she is a complete joy but I am so ground down by the constant battling over the years - you get over one hurdle only to be confronted by the next. I try to stay positive and I choose my battles or I think I could easily come to breaking point. I think the programme highlighted lots of issues without being patronising in any way. The lady presenting was lovely and because of her experience, all the more effective. My only problem was that it was on so late - when, normally I would be trying to sleep, exhausted!
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I have just watched the programe too. and really enjoyed it. It was touching in so many ways, and reminds me of why I want to become a socialworker.
I am a social worker who specializes in disablities, and was literally shouting at the TV at some of the injustices in some of the cases presented. I really enjoyed the programe, and deeply respect all carers of those who have a disablitity.
programmes like these brings me back to earth, and reminds me of the responcablity I have to my clients, to fight for everything on there behalf.
I really enjoyed the show BCC, however it could have been on earlier during the day. But it was fantasic!This is a reply to this message.
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hi i would just like to say i admire you for writing those words and you are absolutley right! please dont be tearful alone as we are all tearful with you , my best regards go to you and yours and i want you to now you are not alone take care sincere regards to you and your family x Paula
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Hi I am a Parent to two children with disabilities with a 9q34.3 Chromosome deletion. This is a rare chromosome deletion that is just starting to be diagnosed. We do not get the support we need and both me and My wife are at breaking point. Over the last 3 - 4 days we both have only had about 5-6 hours sleep, as the youngest has been up all night. Our eledest does get respite but this is only every 3 or 6 weeks, but we cannot get anything in place for the youngest. We get support through the day, but this is not what we have asked for, its the night time. Our eldest son since he has been 1 years (he is now 8 years) is constantly up through the night, but not so bad as at least we can put him back down. Now to top it all off, since waiting for an OT in JAN they came in yesterday, just to say that we do not need their services. Our youngest has low and varied muscle tone from the neck down. He can sit ok, but when placed in a high chair, he does a lot of extending, where is arches his back and throws his head back, but just told that he was winding us up.
We have had undated calls to the Social Work, but nothing to help.This is a reply to this message.
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What a programme. Just realised Im not alone. I needed a towel for the tears. It was too close to home.
I could not get to sleep all night as I was so angry how Social Workers in Cornwall treat families with disabled children. Unless you are brocken and physically hurting your child you have no chance.
Every Socail Services Department should be made to watch this programme as a training session.
This is our lives! This is reality bringing up a disabled child.
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I posted a message earlier, I have 2 sons with disabilities, I agree that the Social Work Depatment does not help. We are in Scotland, so this must be a national thing, Is there anyone who knows what we can do? I think this programs has opened a can of worms, making us Carers/Parents realize that we are not alone.
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rogerjames are you anywhere near ayr
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This is a message to Katacia,
Yes we are outside Glasgow North LanarkshireThis is a reply to this message.
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This programme has touched the hearts of so many parents of disabled children, and I joined the many who cried watching it, relating my own feelings to those brave parents who agreed to take part in the documentary. I have the most wonderful 13 year old daughter who has severe epilepsy and SLD. Caring for her with such a severe condition that cannot be controlled has, over the years taken me to breaking point on several occasions. I have very recently made the hardest decision I have ever had to make......to make moves to pursue a resedential placement at a specialist school for her. I only wish there was more support in every aspect of caring for her including the move to resedential school which already feels the loneliest route ever for me.
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rogerjames I am moving home to Ayr from Cornwall in 2 weeks time. I am moving home for family support. Heres hoping things get better x
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The families featured in this programme touched my heart but unfortunately I found the presenter Rosa someone I could not relate to. My 7 month old baby has Down's Syndrome and I have loved her from conception. Any baby no matter of their condition can keep a parent awake for 5 nights but Rosa seemed to think her daughters disability was an excuse to "shake her". Any other mother would be charged for this. Then again Princess Diana wouldn't be their godmother!
This show could have been so much better if an effort had been made to push social services to help the families featured!This is a reply to this message.
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Thank you for the programme, Rosa, and for the honesty and openness. Being a parent of a very vulnerable child can be an isolating experience. It is a relief to hear of others experiencesand not feel alone.
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Hi I'm new and I also watched the programme and whilst I think it was a very good programme, I can't help getting a bit angry. Everywhere at the moment there seems to be doom and gloom articles on being the parents of disabled children. How about more of the positive side and more about the therapies that really do make a difference and can completley change the life of a child and therefore the family. I'm not talking NHS therapies here which seek to make the best of a bad system, but "alternative therapies" that are restorative - seeking to make a bad system better. I have seen the transformation in my own son and many others after the scotson technique exercises and I know there are other therapies out there that can make a real difference. So how about a programme from the BBC on this side of life with a disabled child showing the joy as progress is made.
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Hi,I did not see the program but live in Cornwall.I have a daughter who had behaviour and sensory problems,and I made the mistake of asking for help from social services.Their response was to take me to court to try and take her into care.It turned out that she had Asperger`s.No apology for wrecking our lives.As far as I am concerned,these people are little more than thugs.
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I think this programme did a good job of highlighting the issues for parenting a disabled child. In fact it was courageous of Rosa Monckton to be open about the incident of her reaching the end of her tether and shaking her child. Nobody condones this action, but it did highlight the point that even she felt this way with all her material advantages (and therefore presumably extra help), then how much more difficult it is for those of us managing with 'normal' resources. I too have a child with Down's Syndrome. Thankfully, I have never reached the point which Rosa described, but I definately related to her talking about being 'beyond tired'. This is certainly how I feel at the moment! I also appreciated that the programme highlighted the issues for siblings. I think much needs to be done to raise awareness further about the needs of siblings.
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