any idea to change things

[doormat]

calling all ladies affected by all types of sn ( not just autism)
just read the tragic tale of the boy and his mum thread

do you girls have any ideas how we can lobby/pressurise govt to hear our needs so see this kind of tragic tale will not happen again

it can be done ( my mum did it re alder hey scandal)

any ideas at all

[chonky]

Count me in, it's something I think about a lot, but haven't managed to get the energy together yet to do something about it.

There may be something about lobbying in this quarter's Contact a Family mag, will go and dig it out. I think we need to decide first exactly what we're lobbying for, so that we can all write similar letters to our MPs. HAs your mum got any good ideas? How did she get started?

[doormat]

thanks chonky
my mum is all whacked out but could ask her for ideas,
i know what you been about being no energy but we can all try and make some kind of difference

any others with some ideas
please

[Davros]

I'm at a loss to suggest anything. What about Carers UK? Should be the prime organisation to deal with this. I might bring it up at an NAS meeting I'm going to soon. Its so difficult as Education is much more tangible and subject to law.

[misdee]

I was invited to a carers event last week. but with no childcare and the event being between 2-4pm and one child at school to pick up it was a no-no.

[doormat]

davros and misdee I have always felt that I am being patronised abit by carers orgs (apart from contact a family)especially local ones

the offer of a coffee and chat and being told
what a wonderful job I/we do
are you getting all your benefits
has just bored me now

how about dressing as wonderwomen up and down the country
hanging off rooftops
and that is if i could fit me fat arse in the cozzie
only joking

[misdee]

ah yes, they ask what support they can offer, but not entitled to help with the kids as the kids arent the ones ill, not entitled at help at home as peter isnt home atm. so thats leave me exhausted trying to visit, run errands and looks after 3 kids.

[doormat]

good point misdee about other children as they are all affected ( cant think of kinder word at mo so apologies)too

[chonky]

doormat - you have made my night, the image of all of us (no idea what you all look like though!) kitted out in Wonderwoman outfits and climbing tall bridges and rooftops has made me pmsl. It has bought a tear to my eye.

[coppertop]

i'd look more like Bella Emberg than Wonderwoman (she says, showing her age!).

Letters to MPs sounds like a good start. Some kind of media interest would help too but I have no idea how you would go about it.

[eidsvold]

I think I am more a 'supergirl' type of woman

But can appreciate where you are coming from - we had the opportunity to take part in a Hanen programme - invaluable and I wanted dh to come too rather than having to do it myself and then educate him also.... our problem we needed childcare - family had existing longstanding prior commitments.

The govt respite service quoted us a ridiculous amount and then said they could possibly care for dd1 but not dd2 - fgs - it was 6pm - 9.30pm... how hard can it be to look after dd2 who would already be in bed asleep......

so the people providing the Hanen programme funded nannies to come and look after BOTH children - we were so lucky.

[Davros]

I get sooooo fed up with meetings being at times that clash with school pick up, never mind what I'm supposed to do with DD. They will usually give me money to pay for a carer but I can't usually GET a carer! Disability organisations are just as bad as they often focus on adults, I had to turn down an invite to something to do with transport recently due to the times, grrrrr. I think I will ask Virgina from PACE if she's got any ideas. PACE specialises in campaigning etc for education, maybe a similar organisation that could steal their ideas and contacts etc could work to campaign on respite, social time, families etc.