Hey MNHQ. Would it be possible to have a discussion about how SN issues/threads are handled on the main boards.

[Pagwatch]

I know you are fire fighting a bit and I'm not trying to stir things up.

I just think that there are endless threads that require you to get involved and try to (for the sake of a better word) mediate between pissed of posters with no real experience of SN/disability and pissed off member of the SN/disability community.

I think you try really really hard to be fair and even handed. It's an understandable response but I have growing doubts about it.
There have been half a dozen threads recently where posters I recognise as living with SN/disability issues deal with a continuous stream of posts from any random who pops up on a thread making the same stupid, ill informed or frankly goady post.
It's like swimming through a tidal wave of shit.
Then, as posters get increasingly exasperated by each arriving poster saying 'well I'm not putting my buggy away if my baby is asleep' or 'why can't I use the disabled toilet if it's empty' or 'but people with SN can be violent. I know of stabbing someone and attacks all the time' they get rude and the thread descends into eurrgh.

I'm still reading constant posts where anyone affected by disability is berated if they are angry, the message being 'be nice, be grateful or we don't have to be fair'

It seems to me that the status quo of 'fairness' is simply unfair.
Posters already dealing with immense difficulty shouldn't be forced to defend themselves against every person who turns up and says unpleasant things under the umbrella of debate. You said a long time ago it was not our responsibility to educate but the reality is that, with no palpable support from you guys, we are endlessly having to educate.

I am not pretending to have the answer but is it possible to contemplate methods by which you could actually say to posters saying 'if someone in a wheelchair can't use their space because I'm not putting my buggy away' that their comments are wrong and not in the spirit of the site?

You link to the This Is My Child campaign but the posters who are the problem won't care and won't read it.

I don't know - I just wonder if you could think about this.
Sometimes there are not two sides to a debate because only one side is directly affected, exhausted, distressed and having their lives and their children's lives made harder.

My 'I couldn't do it' count has sky-rocketed since ds got his dx. Now that it's all 3 of mine with ASD, people are quite open with their horror-dressed-up-as-awe. Don't know why it's so much more acceptable to say it now than it was when it was 'just' dd1, but it is.

As an aside, someone described dd1 as 'a little bit autistic' the other day. Now that one I couldn't let go - God only knows what they think 'proper' autistic is if dd1 is only 'a little bit', given her language disorder, learning difficulties and e fact she will never live independently...

I try not to let the 'I couldn't do it' or worse (let's face it, at least 'I couldn't do it' is halfway honest - I couldn't have done this before I had dd1 either!) 'you're amazing, dd1/dd2/ds is so lucky to have you' go, but my protestations fall on deaf ears, mostly.

I usually fine "no, you probably couldn't" is sufficient.

I read some of the zip wire thread.

The majority voice seemed to me to be that it was that is OK not to be able to anticipate not great behaviour from NT teens who are out unsupervised, but a parent of a child with SN should know their child may misbehave and therefore they are negligent in allowing him/her out unsupervised. Because SN seems to automatically equal badly behaved. Because parenting a child with SN means you should anticipate every possible outcome, no matter how unlikely it would be for your child.

I had a minor incident with my DS1 who has ASD a couple of weeks ago that left me . I would have bet serious money he would never have said and acted as he did. But he 100% did as I was there. At least my poor parenting doesn't include gambling!

Yes, they haven't thought it through arfarfnarf

I have never had anyone say 'I couldn't do it' to me without their being convinced that what they were saying was a compliment. When it's exactly the opposite.

*The idea that I'm the mother of a boy with SN and the expectation is that I shouldn't swear or be angry or call people fucking arseholes.
It's part of the whole 'special children are sent to special mummies' idea. The 'I couldn't do what you do' mentality.

I was 30. I worked in the city. I laughed, I drank, I loved, I fucked, I swore, I cared. Then I had my son and suddenly I'm different. I'm supposed to be ever patient, ever giving. I'm not. I'm the same person.

If you irritate me enormously I may imply you are a massive cunt. I'm just as I was. And if your child became suddenly disabled, you'd remain essentially who you are too.

You could do what I do because, guess what, you have no fucking choice.*

YY. This.

Yep Frayed

An average teenager out on their own is not great. A teenager with special needs out on thrift own indicates a deep flaw in their parent - usually their mother.
Because in spite of every professional I have ever met lecturing me on my need to loosen the umbilical cord and let DS2 be more independent, if I misjudge it I am utterly at fault.
Experts tutting at you for inhibiting your child and underestimating them. Parents tutting at you for just being shit. Apparently.

I have no direct experience of SN but it doesn't take a genius to comprehend people with direct experience of SN have a far greater understanding of SN than those with no experience. Perhaps, therefore, people should listen and accept they know what they are talking about.

I never thought I would nurse a parent with terminal illness and be able to do it and with fuck all support but I did. I was frequently at the end of my tether, angry and stressed. If somebody had said to me 'I don't know how you do it' I'm pretty certain I wouldn't have been impressed. You don't get a choice to be in such situations, it happens and you just have to get on with it.

As for the suggestion SN should only be posted about in the SN topic - insulting.

Sorry some posters ignorance and inconsideration have forced you to post this thread OP.

Agree, Arf.

It's just an extension of those times I was told (when pregnant with dd2) that people,we're so pleased, now I could be a 'proper' mum.

Or when people think that when dd2 or ds does something, it must be the first time I've experienced that as a mum.

Because dd1 isn't a 'real' person to a lot of people.

Of course, if you try to pull them up on it, they say 'but that's not what I meant...' But there isn't ever a convincing explanation of what they did mean.

It goes back to what I said earlier - there's shed loads of people who are only paying lip service to the notion of equality. They don't actually believe in it truly.

TailsUp, yep, done that one too. And yes, the sheer amount of people who told me, when I was 22 and barely out of university, that they couldn't do what I was doing (moved back home, looked after my mum, cooked (badly), did housework (even more badly) and ferried her around to/from hospital (did that bit well ).

I was completely dumbfounded, tbh. Even then, at a fairly young age, I found myself thinking 'well, what a selfish arse you must be, if you wouldn't take a bit of hardship to help out the person who spent most of their life helping you'. I probably should have said it more, tbh.

But, like dealing with disability, you cope because you have to. There isn't a choice. Well, not one I could make anyway.

I had a home start volunteer repeatedly "thank God" her grandson didn't "have it" (it being ASD) when I met her and she was also sure school would "sort out" DS1. When I very politely declined to have her as my volunteer helper, the coordinator pestered me why. I explained I understood she wouldn't want her grandson to have ASD, but it was a bit of a raw time for me (which is why my HV had referred me into first place). The coordinator got very uppity and told me I should use it as an opportunity to educate. I declined because I am selfish like that.

Pandas the 'proper' mum comment is shocking. I know people can be ignorant but that's beyond the pale. Really sorry you've experienced comments like that. Back in the 80s we had a friend in a wheelchair. Out for a meal one night and the waiter pointed at our disabled friend and said to my dad 'what does he want to eat?' My dad responded with 'try asking him'. Sadly I thought attitudes such as those of the waiter had mainly died out, it seems not.

And yes what else would we have done for our parents. Agree people must be sodding selfish to think differently.

I don't really know what to add except that I second and third so many things said here. I had a high flying career, nice house, company car all sorts of dreams and ambitions for the future then DS1 was born quirky. I'm however, not the same person. Right now l'm lacking enthusiasm and ambition for just about anything.

I belong to one or two real life support groups now and when things are going well enough, I can get to them.

Over the last decade mumsnet has been a huge social outlet and emotional support for me (not around SN either). Recently i can't tell if its my exhaustion or a real change here but i've stepped back a little because it feels like theres so much agression that i don't remember from the past. I have been selective about where I post for a while but then I got deleted from a thread as a spammer because I linked to a government page on how to claim direct payments to enable another exhausted person to try to find a way forward. I deregistered but then changed my mind and created a new account.

I'm just glad not to have clicked on the latest bashing threads because right now i dont want to deal with and defend my reality in my virtual reality/ social outlet.

Misdee

I'm sorry - it's raw isn't it.

Oh lord Flouncy, I'm sorry.

Yes, of course up you are right. It affects us deeply. I just mean we don't suddenly develop attributes like Mother Teresa because of our child.

I get the opposite. I get the minimisation of how hard things are for me and it makes me want to explode. I have autism and I've lost count of the number of times I've tried to explain my difficulties only to be told 'every gets like that'.

And don't get me started on the assumption of the lack of severity of my autism because of my ability to communicate on MN. It's like a slap in the face every time.

Re the 'I don't know how you do it' comments, I always want to respond with, well actually for a bit I just didn't do it, all I did was fall apart, until some nice big fat drugs sorted me out.

I got similar comments when I was having chemo, and was really not very well at all. Daft, I was doing absolutely nothing, just watching endless Buffy, having poison pumped through me and trying my best to avoid people.

The thing is people want you to be noble and they can't think of anything else to say. Its quite refreshing when people say 'well this is a bit shit isn't it'

Sorry Pagwatch slightly self indulgent whinge there. Going through a dont quite know who I am phase and would quite like to find the person who could shout cunt when peeved and that be the end of it.

flouncy never apologise for being self indulgent.

Re cunt shouting - ds2 is 19. Time helps you find your cunt

Hazey

Goodness yes. People I love used to say 'but you are so capeable - you don't seem like you need help' and I used to wonder 'what does not coping look like - do I have to put my knickers on my head so you can see I'm dying here, right in front of you'

and yy to 'well this is shit'

I was told i was wonderful once
Just for looking after my dd
What?

Hi all,

It's been a very busy day today and i'm not on top of this thread but I will be come tomorrow.

We will happily have a discussion about all of the issues raised on this thread in the office tomorrow.

We have been talking about adults with SN in the office and also caring for adults with SN and we have a guest post coming from SandyMumsnet who has a DS, Max, who is 23 and has DS. Sandy talks about the process of obtaining Deputyship from the Court of Protection which I know came as a shock to her but i'll leave that there as I am no expert and her GP will be going up soon.

We are very keen to host more content surrounding adult children with SN and we will be asking for your input when the time comes.

As for being more forthright on threads and not just linking to TIMC, we will have a think and a discussion in the office about that this week and feedback to you.

Hi Rebecca. Thanks

Funnily enough I got my documents for our deputyship for DS2 last week.

Can I just stress, I'm not fussed about an early or speedy response.
On the contrary I'd be grateful if you at MNHQ could try and really assess the effectiveness of the current policy re SN/disability and figure out if it's working.
I'm of the view that it's well intentioned but now past its point of usefulness. There has to be a strategy for dealing with questions which are actually prejudiced or judgemental.
Not every thread or query should be treated as benign or innocent. Sometimes a thread which looks like an enquiry is too ignorant or bigoted to be left.
And posters saying 'well I'm sorry but I'm not folding up my buggy' should not be left with the impression that that is valid.

Please figure out a way to look at this.

Thanks Rebecca.

Very much agree with everything that's been said on here, other than the suggestion of diverting SN threads to the SN boards. Adults and children with SNs should be as much a part of our communities, including online ones, as anyone else, not just popped aside away from mainstream society, in one corner.

I've figured out that actually, life is nicer having hidden all of AIBU. I have enough anxiety in my life from parenting (enough to be going to the GPs tomorrow) to be paying attention to posters like those on the zipwire thread. I drafted a helpful, reasonable post several times thinking that that's the one disability I feel I can give a little insight on. Deleted every one other than a link to ADHD myths, which, not surprisingly, no one have a toss about. Doesn't surprise me at ask that there were trolls and sock puppets on there.

Would be nice if things changed but I suspect there are too many arseholes who come on here for entertainment rather than advice for things to actually change.