Should all us Exhausted and taken for granted Carers of Disabled Special Needs Children finally challenge this Governemnt with a signed Petition for more Help and Resource.

[gotchababe]

I have read so much the past 24 hours on the trials and tribulations of us over worked, exhausted and underpaid carers. We love our children unconditionally and deliver the 24/7 support and care they so require. We are human and not robots. We are sleep deprived and emotionally drained, if we are seen to be coping, we are left. We have constant battles with Medical, Education, Social Inclusion, the list goes on and on. All the policies are there in theory, in practise they are not. I would urge parents/parent like myself to make their voice heard. We are our childrens voice! It starts with the very top ie the Government, they have to take responsibility for the correct implementation of Specialised Services. They promote 'The child comes First'

Oh I am no victim: my CA for the last two years has almost bought me an MA iNASD so I work in my own way towards changing things for every way.

But I could never get to London for anything; completely impossible for us. Train fare alone is 3 times what is sat in my personal account at this very moment. Well it was £100 last time I went down- and that was 2003.

And I couldn;t get anyone to care for the boys either, DH works every day- that's not giving up, it's our reality,

' Victim was used theorectically'

We have all endured so much, you do not have to tell me how hard it is. We all strive to change things for some betterness and status quo if possible. Most of us work on our own, I FOR ONE. Those in the family unit with both parents somewhat lucky? It is reality that most of us are crumbling ReclaimingMyInnerPeachy x

I tend to agree with Wet August.
I have marched on Westminster with a local carers group, pne of many that day. Rose at 4am to take the train etc...
Finally our local MP appeared and was more interested in giving us a tour of Westminster until I rather bluntly said 'I had this tour when I was doing my O levels for Govt n Politics and I wasn't much interested then either'!
finally we adjourned the the tea room, had a nice cuppa while he whittled on about nothing. Practically had to drag him kicking n screaming into the reason we were there.
Wiped the floor with him verbally.
Did it make any difference? Did it hell.
He tried to tell us he understood having been in a similar position with a close relative until I badgered him for details and he admitted he'd immediately put this rellie into a care home!!!
And he was one of the more sympathetic ones. Some didn't even bother turning up.

Oh i've crumbled; sat in the Psychs office bawling my eyes out, sat at the top of the stairs thinking if I threw myself down it woudl look like I tripped...

But I would never do that. becuase I won;t be anyone's victim. And I think as long as you are fighting you are not a victim: there is nothing about victim that defines any of the many ways of fighting- marching, letter writing, taking on SSD and the LEA and often DLA....

DLA changes will go through. I've signed, sent, written and reasoned in many avenues but they will happen. I will lose my home, that will happen too. Getting myself into a position where in two years we can cope without DLA and can even help empower others to cope with either being a carer or changes to the system is as valuable as doing the palcard waving. It takes both.

WA I agree with you entirely.

yes yes and yes...fed up with being knackered looking wizened and hearing patronising remarks from politicos who have i doubt never had to worry about paying water and heating costs associated with disabilities........however every parent of a disabled kid should also go onto the EDCM matters and take the action suggested to ensure that the monies given to local authorities is RING FENCED or our childrens lives and those of our other children and somewhere down the pecking order ourselfs are going to get a lot worse..please go to the website and take part!:)

oh a ps i am still awaiting a reply from ian duncan-smith around his plans to take away peoples mobility cars if they are away from home for more than 28 days..his argument for this course of action being that if the mobility user is still taken to "dentist/doctor/library/bank" job done..what was the point of personalisation?person centred planning?valuing people now?etc etc..sorry for grammar but very very angryx

Are you all aware that EDCM is England only?

And that many people on MN are in otehr parts of the UK?

It's noted by many charities that IDS never ever replies and he didn;t to me either.

In fact when I wrote to him I forwarded my letter to a few charities I have had dealings with and got messages back saying good letter but you won;t hear ever again.

wetaugust,i have to say,you should never take away people,s hope,if we all just decided that its pointless,nothing in life would ever change.
If people want to march on goverment then they should,because if nothing else ,it keeps media coverage high,and goverment gave the councils the green light to manage how the money is spent,so they must also have the power to revoke the same bill.
if it isn,t working,which its clearly not,then change must happen,so i,m all for shouting,if we sit back and accept,then that is what we will get.

Here Here gilly3.

Just checked my emails and more crap from LA. Fed up and deflated, but you know what I will fight and fight and fight. Have emailed everyone who is anyone at LA, and my local councillor and MSP.

I AM ACCEPTING NOTHING FROM THESE MOSTLY MACHISMIC MORONS WHOM KNOW NOTHING ABOUT MY DS. X

yuo go gotchababe,i,m right there with you{SMILE},i,m having a day of ds of school with a virus,the cat howling,the phone ringing,my ds son grabbing me every 2 minutes to watch muppets from space,the same bit over and over,and my youngest wanting to do jigsaws,must sound familiar to some of you.
so i thought i,d grab a quick 5 minutes to post,DO YOU THINK THERE IS ANY POSSIBLE CHANCE MUMSNET ???? That there is a way you could help fight the carers cause by sending a copy of all the carers stories to the pm,or helping with publicity,to give us a way of keeping the pressure on,i,m sure all would support it,WHAT DO YOU SAY MUMSNET.XXX

Hi
Me again. Every year (normally summer time)we have a carers week; media coverage, posters up, collections etc and these are generally organised by carers assc's like your local carers group. It will probably be more effective to sign up with them to do the organised awareness raising/MP lobbying etc.
Might be worth contacting them and finding out what's happening/what you can do and so on...erm, think you'd find them through direct.gov or PRTC or maybe carers.uk/carers.org...
Or even checking yell.com or yellow pages for your own nearest group.
:)