How could we help ?

[travellingwilbury]

Firstly apologies for posting in here , but I keep reading on MN about the lack of support a lot (all?) of parents with SN children receive in the uk . I was under the misguided illusion that things were a lot better than they appear to be .

It has been mentioned that parents of NT children really need to get on board and try and get things changed but I am sure I am not alone in being willing to try and do something but I have no idea where to start .

I am assuming maybe naively again that there are pressure groups out there that are fighting already and I would be grateful if someone could point me in their general direction .

Again I apologise for putting this post in your haven but I didn't want it getting lost on the main boards and I was after opinions from people that know rather than guesswork from people like me which may well be well meaning but not right .

TIA

Hi Sphil,
Horse Boy Camps link:

www.worldwild.co.uk/horseboy.html

travelling wilbury very good of you to start this thread. You might be intrested in volunteering with children with special needs to, for example, enable them to access activities they couldnt otherwise, or enable them to access activities without a family member having to stay with them at all times etc. Dont know where you are based but this site gives a general idea how www.workingwithkids.co.uk/special-needs-volunteers.html

thanks for the thought

Thanks!

Travelling wilbury,
Thank you, this is a great thread. I have made contact with someone who lives quite near me and we have spread the news about Surfable and Horse Boy Camps.
I hope the links we have given provide a starting point for you. Do let us know what you decide to do.

The hope is that in the future horse boy camps will be free btw. (I met up with the person running them a couple of weeks ago).

Or at least free for those who can't afford them. Not sure when that will happen - obviously it takes time to organise that sort of thing. Will pass on information when I get it. They do look fantastic though, we are going to try and go next year. They will be run all around the country, so there should be something near everyone eventually.

Thank you all of you , I will let you know what I decide to do , One of the first things I am going to do is to find out more about this ridiculous 4 nappy rule . I know it is only a small thing but it is completely nonsensical to me . I will ask my friend about how she manages to get round it , I am sure I can find quite a few people locally to write to the mp and complain about it .

Starlight that is interesting what you say about the percieved support . I am wondering if I am guilty of that with my friend who has a daughter with cp , I first met her and her daughter when I was working in home care and we used to go and help out . I do know she has fought like a trojan to get the assistance she does get and tbh I don't know where she gets the strength sometimes .

I do keep going back to this 4 nappy rule and I know it is a drop in the ocean compared to other major problems parents with SN children have but it just feels like it would be a straight forward thing that parents of nt children could get a handle on . I am going to speak to a friend of mine who is in charge of fundraising for the NSPCC in the south east and see if she has got any ideas on where to start . I know her line of work is completely different but I am sure she will have some ideas on where to start .

www.mumsnet.com/Talk/1374/860668-Mumsnet-campaigns-and-alliances

Can anybody who would like to get the 4 nappy rule changed please come over and shout . If enough people add their opinion before someone comes along with another idea it might just happen .

thankyou travellingwilbury

re the 4 nappies thing - does anyone elses pct offer them stupid bloody sheets to stick in the nappies as a way of making em go further? Like expecting you to siphon out the shite is some sort of helpful solution

I can't believe on top of this dozy rule, it isn't actually made clear at the start. ie you are asked how many nappies you use / how many you reckon you need - but makes bugger all diff cos you'll get 4 anyway. Maybe they hope someone'll go 'ooh we only use the 2 a day. Maybe we can whittle it down to one if you give us some of those shite filters'