CAN MUMSNET HELP US???

[gilly3]

Dear mumsnet,can you help the the parent/carers on your forum,by possibly sending all of our stories to the pm,or helping us to keep the stories in the media,it would be a great help and i,m sure you would have all of our support.
WHAT DO YOU SAY MUMSNET?ITS GOT TO BE WORTH A GO,HASN,T IT?.XX

I think this has been a bit of a misunderstanding. So many of us cherish the anonymity of the SN board, as there are things we can discuss here openly that we can't in RL. So when someone brings up media, people tend to get a bit jumpy. Let's face it, the media can be a good thing, but it can be intrusive and twist things around as well.

I don't think anyone on here has any problem with a concerted effort to fight for rights of disabled. They simply do not want this board itself and their individual posts to be highlighted in the media, which is completely understandable.

Perhaps those who are looking to "up" the profile of disabled rights and such can have a specific thread that can run in this board that has updates on laws and things that would interest everyone and information on media interests in this subject matter. Then those who want to get involved in that way can go on that thread, and those who are not comfortable with it can avoid it. Perhaps a link to the main MN page or the MN campaigns page as well for it, so that particular thread is available for other MN peeps to see as well.

gilly3

goblinchild crossed the civility line with comment. Each an individual with their own individual view on matters. No need for snapiness or aggressiveness. After all the common thread here is, we are all carers' of a DC/Children.

Agree maybe to with Triggles about some of us who may want to "up" their profile with a specific thread.

What else does anyone think?

doricsue

Your last comments spot on. Is quite daunting for us new members.

thanx gotchababe and triggles,agree the "up" profile sounds good,i am a new member myself ,so this has been quite a baptism of fire..xx

Well it is quite daunting I expect but you need to balance that with many of us having eihter big back stories on here the press could pick up on against our wiishes; or the fact that many of us are or were friendly with the lady in the press so are very aware of the whole thing ATM.

Plus- whsilt I hope I am friendly etc it's not actually any of us's role to be that: maybe there should ideally be some kind of MN chaperone but the whole MNMentor thing died a very rapid death when tried a few eyars back, and we are also (well I am) a little wary of newbies who simply want to use MN as a profile raiser: CHAT may be OK for that but SN very definitely is not, which is why it is an opt in section.

If SSD felt sufficiently forced to intervene with us given ds1's beahavioutal issues they could quite conceivably take away my NT children as a 'safety issue' becuase they'd be far easier to foster. I;d far rather fly slightly under the radar and get skilled at coping myself tbh.

tbh the idea of mn getting involved again in anything which could end in more loss of privacy is not one I like.
I think there are quite a few threads on mn offering viable alternatives(Like the stop DLA cuts campaign)
the trouble with using peoples personal experiences is that they could end up being ripped to shreds.
posting this just after the media furore of last week is going to make people wary.

sorry peachy i dont understand, profile raiser ?? it may not be anyones role on here to be a mentor, and chaperone but i dont think its anyones role on here to be nasty and snipey either, were you not a newbie yourself at one time, the case in the news might have made a lot more people with sn children use this site but is that not a good thing ?? the more input the better, you cannot say that you do not trust new people ( especially when their profile is public )when you your self profess to be a fairy living in a garden )my DS social worker does not even bother to return my calls, if i told her he was hanging out the upstairs bedroom windwow threatening to jump i still very much doubt she would care less so to come on here looking for people in the same situation is supposed to be a positive thing but i find it very negative, we are all in the same boat but unfortunately some of us are sinking faster than others and after all the negativity from LA the last thing people need is to be sniped at for joining a site where you dare to be new and not agree with all the oldies, a lot of people with SN children are vulnerable and lonely and the snipey comment can be the thing that pushes people over the edge.

sorry peachy i dont understand, profile raiser ?? it may not be anyones role on here to be a mentor, and chaperone but i dont think its anyones role on here to be nasty and snipey either, were you not a newbie yourself at one time, the case in the news might have made a lot more people with sn children use this site but is that not a good thing ?? the more input the better, you cannot say that you do not trust new people ( especially when their profile is public )when you your self profess to be a fairy living in a garden )my DS social worker does not even bother to return my calls, if i told her he was hanging out the upstairs bedroom windwow threatening to jump i still very much doubt she would care less so to come on here looking for people in the same situation is supposed to be a positive thing but i find it very negative, we are all in the same boat but unfortunately some of us are sinking faster than others and after all the negativity from LA the last thing people need is to be sniped at for joining a site where you dare to be new and not agree with all the oldies, a lot of people with SN children are vulnerable and lonely and the snipey comment can be the thing that pushes people over the edge.

I disagree that I was at all nasty or snipy.

Actually I wasn;t ever really a newbie no, as been here fairly much since start but that is of no relevance.

And I;m neither a fairy in a garden though have just reclaimed my name and forgot I did that . I'm actually just a very tired mum of 4 (2 disability) who doesn't fancy being a poster girl.

Oh and if it's info you want fire away: i'm pretty clued up ( doing AM in ASD, used to work for parenting charity)

Just- sn for sn; thre are a lot of very strong reasons why sn is a locked space you see- it used to be that when it wasn;t you'd get people posting 'How do I get my 8 year old toilet trained' and someone would come and go 'OMG you terrrible mother you ahven;t trained your 8 year old?'... not noticing they were in the SN section. We also got a few trolls and that side of it has been better since.

The not trusting newbies- I didn't say that and I don;t mean it: I meant I didn't trust people who simply want to use mN as a profile raiser without contributing in any way or needing help: some people seem to think MN = help, if only. people who want to join in the community are more than welcome: in fact if you scroll down in SN you will find a thread titled welcome newbies started by me.

Uncivil?
Did I swear, rant, call you rude names and cast aspersions on your intelligence?
However,if as a newcomer you felt I was uncivil, I apologise for being shocked that a newcomer made a general appeal to the administrators to send all of our details to the media.
And when another poster said they'd leave if that happened, the response was

'fair comment wetaugust,but since we are all annons on here,could it hurt.x'

So when I said the same thing again, but with more emphasis, suddenly you are all hurt and upset?
There's already an exodus of longer-established posters on the way, if the sn forum is going to change beyond recognition I don't see the point in staying either. I'm not flouncing, I'll wait a few months and see what it metamorphoses into.
My son and I have fought our own battles long and hard for over 16 years, we have supported others along the way, and as a teacher I also do the best I can for the children with additional needs I come into contact with.
My anonymity is very important to me, and to feel it's in danger from thoughtless enthusiasts who take a negative response as unfair criticism is very annoying.

goblinchild I am completely with you. I may not have been here as long as you - just over a year - but I have really appreciated all the advice I have had directly and from lurking.

The SN board has changed out of all recognition. I used to enjoy coming on here to read Star's latest pearls, Lougle's wisdom, etc. It's just not the same anymore. And it's a shame. I'm still in mid-battle for many things and it won't be as easy without MN SN

Well, let's wait and see what the transformation ends up being like. Perhaps it will shake down again and the wanderers will return. Or not. Then I'll just escape to the main boards with a new name, and anyone that wants me will have to pm me if I can be of any help. < ambles off to consider namechanging possibilities>

Goblinchild don't you even think of leaving here, I will not have it, I might have name changed this week for my own sanity, but you are someone who I really need on here as our teens are the same age group iynwm. you were not snipey or rude.
for some reason people seem to want the the sn topic to be all fluffy, it can't be sorry, we are people who are used to shouting, we can't just go all fluffy.
the op was well meant but I can't imagine anything worse than sharing my story with the PM .

Well im just going to leave you to it because i dont think this is for me, if i needed to know how to toilet train an 8 year old then i dont think i would be a fit person to be caring for them in the first place, i dont care about staying anonymus as i have nothing to hide, in fact i would love SS to threaten to take my sn son away because at least then i would be able to get my side across but there is no chance of that happening with my ds social worker as it would involve meetings and paper work, i am in the process of complaining to her boss with the help of the head of special needs at my ds sons college though, i dont really need any advice as my instincts have served me well untill now, my ds ASD head of department at his last school got sacked for gross misconduct so dont hold much trust in ANY experts but was hoping to hear from some parents in the same boat, not for advice, more to compare whats on offer from different LA

Nope, I wouldn't like to do any such thing.

One of the reasons I enjoyed posting in the SN topic was because there were likeminded people fighting the same causes for their DC. Not because we have a bone to pick and get out there in the media.

I am keping allow profile atm, it is crazy on here, and I have enough crazy at home thank you very much.

Well lots of people with a sn child need help on toilet training- I have no idea what DX you are dealing with but certainly kids with say an ASD have very different elarning styles often. My ds trained at 6; I was lucky.

We had a similar SENCO: used to yell at us in front of classes, lied- allsorts. Luckily we've managed to find ds3 a decent Sn base where he is thriving (in his own way) and ds1 starts an ASD Base in September but it's been a bloody long haul and I don;t mind sharing what I ahve learned with people, as well as asking when I met hurdles.

But it's not for everyone: I hear special kids in the UK is good but am sure there are other boards about.

Ah 5intehbed tell ema bout it LOL- ds's TA is away with ehr other charge and ds1 not coping; just trashed kitchen. Have got a pic so might post it on profile later. After clearing it all

I think the key here is that while you doricsue don't care about staying anonymous, some of us do. Some of us prefer to remain under the radar for our own particular reasons. I would say that it's nice to have new people, but those new people need to understand that a lot of these posters on SN have been here quite some time and it's not a good approach to immediately start dragging in the media approach, especially when we've recently had a media frenzy on here that created some discomfort for some as it is.

Just try to remember that while it may be something you want, you can't speak for everyone.

It would be great though if tehre was a thread in chat with people's stories on; chat because so many people cannot see the SN section.

My ds1 is very aggressive and I don;t want him asociated with in the press; I also am studying and sort of working in the field so it would be really bad for me.

but others I woudl say go for it- but Sn section really is seen at a guess by quite a small % of posters so saying chat isn;t saying go away but a helpful suggestion. In Sn you get SN people.

Sorry, I must have x posted with Doricsue before. Need to comment on this, and no I'm not being snipey or rude or uncivil.

"if i needed to know how to toilet train an 8 year old then i dont think i would be a fit person to be caring for them in the first place"

That is very condescending of you. A lot of parents on the SN threads have children older than 8 who are still in nappies, and they are the most fantastic parents I know. Just because their child isn't conforming to the norm does not make them an unfit person. FFS, do you not think they get sick of this in RL, they don't need to hear it from other parents of DC with SN. We are supposed to support each other, not criticise!

Well I amnot going and if that annoys people so much the better.

Seriously i tried to ignore that comment as I;ve already managed to upset people without intending to but come on Dor, that's just ridiculous. I am lucky ds3 is now dry; many aren't so. And it is luck- muscles, brain processing, sensory- all sorts.

And you know I am ATM trying to potty train an NT 9ish) 2.8 year old and finding it quite rtrying enough. Potty training, as I recall, is rarely easy.

I would but my story is pretty boring, I doubt the media would be interested. then again ds is only 2 and we haven't got to the point where I need to do a bit of fighting!