A message for Riven

[violet101]

Hi Sweetheart,

I'm an older Mum that used to come on this forum but rarely do these days.

I just wanted to say that I have walked in very similar shoes to you and I want you to know that you are amazing.

My daughter also had CP, was quadraplegic, peg fed, epilepsy, unbearable reflux.. oh the list goes on.

I only managed a few months with daughter at home before I became ill ,exhausted, depressed - I too asked for respite, not actually because I needed the break but because my daughter condition hadn't been stabilised. I knew she could couldn't get any better but I couldn't bear the thought that she had to live in so much pain.

I too asked for respite, and I too, was turned down. I too had to 'throw in the towel' and told SS if they didn't do something to help I couldn't be held responsibile for what I might do. Well that got their attention and respite was applied for again... and turned down again. Eventually a multi disciplinary meeting was scheduled to discuss our case. I insisted on going and insisted on taking my daughter so they could see we were talking about a little girl, not just a name on a piece of paper.

Finally I got respite. I got 3 months whilst they played around with her meds until they could stabilise and keep her relatively comfortable. After that I got 2 nights a week on account of my then husband travelling.

You will get there too - but you do have to fight. You should be so proud of what you have achieved...

My daughter passed away when she was two and a half, so I was only two and a half years exhausted - but like you, I never had more than a few hours sleep per night, I spent many a night either in or going to hospital -it is a relentless treadmill and the hardest job in the world.

I tried so hard to raise awareness - you have achieved where I failed. and I wish you all the luck and love I can. I am sorry to waffle I just wanted to let you know of my outcome so that it might give you something to aim for, that is possible.

Ironically I work now for SS and I see the other side of the coin, but there is no exscuse for the way that families like you are treated.

David Cameron sit up, stop hiding behind politics and cut to the chase. if every family threw the towel in, this country would be on its knees. You NEED these families much more than they need you.

Hi Riven and family

I wholeheartedly agree with the lovely Violet. I too was in a very similar predicament 18 years ago. I was a single mum with a severly disabled 5 year old and a 2 year old. I got 1 nights respite every 6 weeks. When I asked for more, I was told 'you should think yourself lucky your getting the help you are'.
I ended up going that step further, and had to put my child into voluntary care. For all our sakes. It ended up costing the State around £1,800 a week. And all I wanted was a few extra hours a month.
Riven, please, please, keep up your fight because the alternative will stay with you for the rest of your life. Not a day goes by when I don't feel guilty. Once you get into that system the rollercoaster starts. The questions, and then the accusations start. They don't seem to see that a few extra nights a month make life worth living. That to be able to have one, and heaven! two nights uninterrupted sleep, and be able to spend 'normal time' with the rest of your family is the making or breaking of your whole family.
Keep up your fight Riven. Your daughter, you, and your family deserve it! They will back down. And I bet, that by now, the offers of help from the public are rolling in! Take all the help you can get, and embrace it, and never forget (not that you will) that you and your family are more important than any penpusher sitting there deciding whether your family stays together or is ripped asunder. Good luck Riven, from the bottom of my heart xx

God Bless Riven and family,
Thank God someone has spoken up and made awareness of the problems with the pen pushing system and how wrong the system is.

to even consider to get the country out of a
debt by looking down the road of cutting help in respite, dla and carers allowance is beggers belief
we carers are all behind you. xxx

Hi Riven

Good for you for standing up and shouting. My son had the same condition as your wee girl but with added complications i.e., Crohns Disease and a shunt. Sadly he passed away in Oct 2009, aged 12. The last nine months of his life were very difficult for us. We watched him getting weaker everyday and it was very hard. He was in and out of hospital every month. I started to take panic attacks and just wanted to run away from everything. I was lucky I had a brilliant social worker who was there for me and my family.

I admire your courage for standing up and saying enough is enough. Society is very good at putting their head in the sand and ignoring families like ours. Keep shouting Riven, and I know how much energy it takes to do that, but if you keep shouting maybe eventually they will waken up and start paying attention to us.

Come on other parents start shouting, support Riven let society see they have a big responsibility too!!!!

doing a bump for Riven,
take care x

bumping for Riven

Hello Riven

I know you didn't ask for this media circus around you and your DD but take comfort from the fact that many people are noticing how much you (and other parents just like you) have to do in order to care for your children.

Parents like you need much much more support - we all know money doesn't grow on trees but let's be honest - it would cost the country a lot more if parents and carers threw in the towel.

Much love to you, your family and especially DD. Stay strong and take care xxx

Hopelessly (aka JollyPirate or Amanda)

I have a 30yr old son who is severely disabled. Up until October 2008 (Breaking point) we had received no services from our local authority.

When I became suspicious of a social workers motives I decided to research for myself through the internet ?Fair Access to Care?. I discovered that my son had been entitled to a Direct Payment going back to 2003 when it became a duty of the Local Authority to offer an alternative way of meeting care needs.

It has been a real struggle, but my son now receives over £700 per week to pay for his care, and we can choose how his needs are met and by whom.

We have complained, and recently the Ombudsman has found maladministration by the council. It is simply down to the social worker involved and the eligibility criteria they assess you as being in i.e. substantial/critical.

They will not offer direct payments, you must ask and stand your ground. If you are exhausted and not up to it find an advocate on the councils website or better still get a solicitor

Riven you are an amazing courageous person to have poured your heart out.We are all behind you.We all know exactly how hard a life it is.Keep fighting Riven.God bless.

Boobaby - can I just say (I work for SS) and it is their intention that everyone should be offered direct payments or personalised budgets (names vary from county to county). We are piloting the system at the moment because the gov't actually does want to empower people with managing their own personal care, choice etc.

So please everyone, ask about them. They weren't an option in my day but are seen as the way forward now.

I am shocked you've had no help or support until now but relieved to see your son and you are finally getting the support you deserve. You obviously had a poor SW but there are some good ones out there too.

Take care x