I can't believe how unsupportive this board still is!!!!!

[devientenigma]

We are supposed to be here to support one another, cheer people up where possible, give advice where possible.
I have been on this board years and I would say the last year has been terrible!!
It doesn't matter what the ability or the need is we all still go through similar issues and feelings.
There seems to be a lot of jealousy and striving to be the best!!
The board has put me off posting a lot of my issues, due to the lack of support and hurtful comments that people have and haven't been giving.
I can not leave the board as my situation is desperate, however I have become more of a lurker, please also think what this has done to regular advice givers and supporters, people who have also been around for years...........gone!!!!!

but here's the thing - i do worry that a general rule of thumb that 'professionals are useless' is going to make it much much harder to raise a child with sn. there are fantastic professionals out there who will bend over backwards to help. to give new sn parents the impression that at all professionals are money-saving autobots that don't care about your child can't be a good way to build relationships, can it? or to ensure good support for your child?

i know relationships with professionals break down - and taking a hard line in that instance is perfectly reasonable, but starting off a new relationship with such a pessimistic view (not a realistic view for a parent who has never met the professional concerned before) doesn't exactly get it off on a mutually trusting note.

i don't believe for a minute that the midwife that broke dd2 did it on purpose, for example. and i don't distrust mws as a result. i feel very sad for her. and for dd2 of course, but the mw must feel dreadful.

that said, ot's seem to be getting warm and fuzzy vibes here recently

maybe more support and less doom would be a good thing?

Agree totally madwoman, I think there is generally more support here and some of the encouraging stories around the CP areas have been lifesaving!
DD had a go at SKINUK and its got a wierd registration thing, but she will try again. One oldie we miss terribly is the lovely glittery but she is on SK so even more reason to give it a go. DD was invited a while ago onto some fb by an oldie, she doesnt post but laughs as they are even tearing themselves apart there.

If I'm fair though I think sometimes the stress of dealing with some of the more severly affected SN children or those with challenging behaviour can colour your outlook on the world and sometimes it comes out in unhelpful ways that is just how they feel on the day. Other days were good and it showed in the posts.

All our professionals are lovely (except the community paed who is glass nearly empty all the time, and DD has refused to go - her DH has that pleasure!

I think this has improved lately and will continue to do so. Every one of our children and parents deserve kindness and support, in an outside world that is sometimes unkind.

How sad that this is happening . I am more of a lurker than a poster here on the SN boards and the same on the FB page too.
As the parent of a child with SN I think it is so important that there is somewhere we can support one another. I didn't see the thread that sneezecakesmum is talking about so can't comment beyond saying it's sad if a Mum felt so unwelcome she has not been able to come back.

I appreciate the fact that SN are a spectrum in themselves and some of us deal with severe physical as well as learning disabled children. I am fortunate that my son is on the higher end of the autistic spectrum but this in itself brings it's own challenges as he is not obviously disabled.
Would you DD return here sneezecakesmum - you say it seems a better place now?

I thought most oldies were as friendly as most newbies. There just seemed to be a little spat post Riven, where a couple of posters on SN got nasty. Seems to be back to business on the whole.

By the way, I'm DonkeyDerby, just namechanged cos I left for a bit then changed my mind. I left because I waste too much time online when I have important things to do, and I found out via AIBU the extent of crazy goings on on MN, with people rallying support on Twitter etc., just to pick on new posters. Sick stuff. But I'm addicted so came back!

About SKINUK - I tried to sign on recently, after not going on for ages and it seemed to suggest you had to pay. Is this correct and if so, how do they ever get new people to join?

oo, really? not sure - i was a member from before, but have never paid... i'm not on there much now, just pop in for a look every now and again. will try and have a poke around later i know they had to formalise things a bit (something to do with their charitable status or events or something) but didn't realise it had become inaccessible as a result! that would be a shame...

im still here! thats the first time i've ever had a mention i think!
i do linger over on SKITUK more now i must admit tho!
there is a one off £10 verification fee on there now for people who want to become charity members as they have tightened up security on the forum but the public forum is still free and isnt searchable by google so not actually that public IYKWIM?

oh yeah if you havent been on for a while you would need to re-register with them if you havent since the Forum was upgraded, but it is still free

Sneezecakesmum - the 'some oldie' who invited your dd to the book group was me. Ihad never flamed her and indeed exchanged PMs with you offering her support, which is why I invited her to the group.

So to read that you two are sneering and laughing at is pretty off.

Your bitterness about this is quite astounding and I believe it is now surpassing the flaming your Dd got over a misunderstanding,

I'm still here, albeit a bit more of a lurker since I was called a bully for disagreeing with someone when they said they were being picked on because she said those who didn't toilet train their DC with SN were pathetic

SNMN should be a place where you can come and vent and not get flamed, whatever your opinion, however when your opinion is mocking those who struggle on a day to day basis, maybe the SN MN board is not for you.

Sorry for rambling, I just feel like my safe little sanctuary is no longer safe. I do try give advice if I can though.

Sneezecakesmum if you think everyone here is vile & gives crap advice, offer no support & you enjoy watching them having difficulties then why do you post here at all?

Fanjo hope you & your lovely dd are well :)

This was a unique place - one of few places on the internet not full of feel good crap. Somewhere you could get really solid advice on the tough stuff - legal, education, evaluating the efficacy of therapies, dealing with professions who aren't doing their jobs. That expertise came from years of accumulated experience from the 'oldies'. New posters will miss out on that. I'm okay, I have a fabulous therapy programme running for ds, I have badgered and cajoled and complained until ds gets support he needs from good professionals, I have had the confidence to to say 'no this isn't good enough, you need to do better'. I learnt that from the oldies here & when we run into difficulties in the future - which I'm sure is inevitable - I'll still have 'you are your child's best & only advocate' ringing in my ears because it has served ds very well so far.

It's will be a crying shame if new posters don't get to hear that.

Thanks for the SKITUK - I'll look again, but I never found it as user-friendly as here.

5inthebed, the toilet training poster got - rightfully - shouted down and life went on. Don't let someone like that put you off. That was the post-Riven 'blip' I was alluding to, but I haven't seen anyone else with such ignorant views post on here since. Hopefully, a one-off.

Phlebas new posters also often speak from experience so have lots to offer. Let's give them some credit

agree with the posters who say this is a period of transition

and not surprisingly so: this is a time when families dealing with SN are under suspicion from the rest of society, we are all feeling a bit raw, I imagine it must have been similar to have been a single mum in the mid-90s, or gay in the late 80s; it's simply not a good time to be us, tensions are building up

it will pass and the "disgusted of tunbridge wells" faction will lose interest in us

but at the end of the day we will still be there and support each other

I'm an 'oldie' that left in the wake of the Riven thing and came back to look at the board this week following the SEN Green Paper. I especially wanted to see WetAugust and Starlights' reactions as I know that, like me, they automatically look at the legal implications.

I don't know whether the OP is right because I've kind of lost the right to comment, as I have left and have no intention of coming back properly.

I will say that part of the reason why I left was the 'backstage' bullshit. I had an experience last year of the SNMN Facebook connections being used to slag me off - turns out it wasn't me they were meaning to slag off - they thought I was someone else, but it left a bit of a nasty feeling that it could have been me.

So, the Facebook bitchery pissed me off quite a bit. Then, in the wake of the Riven thing, the censorship by MN, hypocrisy of certain posters and the deliberate twisting of things that were said for people's own agendas annoyed me.

Plus, again, the backstage 'leader of the SN clique' stuff, on yahoo boards and then on the FB group set up for certain special favoured MNSN members, and used (as confirmed on here by Lougle and others) to slag off MN members just made me think fuck it. I have enough crap in my life without feeling rubbish when I turn on my computer.

I used to come on here every day and tried to help people when I could. I wasn't an expert, only really useful on ASD, Statements and DLA, but I did try.

I'm just not a person who can manage to sit politely if I see someone else lying, exaggerating, bullying or stirring, and so I would comment, and then that earned me the criticism of the SN Mafia - which did exist, regardless of what anyone says. I can see that sometimes, if you didn't know the background, it looked like me who was the problem. I guess I couldn't face having to defend/ explain myself every moment, especially as some posters would run to MNHQ every time I spoke in my defence.

I don't think any board should be unconditionally supportive. I think challenge is good and healthy, and Starlight said to me once that I did that for her helpfully, even if it knocked her a bit at first. But I do think that the majority of discussion should be done above-board and on-board, and it certainly wasn't that way by the time I left. It was all 'x is my friend so you can't ever ever not agree with her or I'll come and tell you off' and 'you can't be part of my off-MN group because I'm in charge ner ner ner ner ner'. If you weren't on FB and you weren't part of the clique, you didn't realise the subtext beneath every discussion and I know a lot of people weren't comfortable with that.

This board will evolve and I think that new doesn;t necessarily mean bad or unknowledgeable. I miss it in lots of ways, but I miss it how it was for me: a board where I believed that everything was OK to take at face value. Once you realise that there's a whole lot going on elsewhere that you aren't part of, and that what you say here is used against you on other websites, it can't ever feel the same. If you can accept that from the start, I guess it's probably not an issue.

What I do wish is that the disabled/ carers community in the wider sense was more united. It's become divided and hierarchical and that's not going to achieve good things long-term.

I hope that, once the dust settles, this board will become something good for people again. People need knowledge and unity with others and there's precious little to be had in RL right now! It's never going to be what it was for me, but I wish the best of luck to others.

It will be a lovely place again. There's been a bit of turnover and people are finding their feet, that's all. When everyone knows each other you get much more of a community spirit (one reason I never namechange, even if people think "oh, it's that idiot r3dh3d again" at least I'm a familiar idiot iyswim) and, crucially, there are less misunderstandings and misreadings because everyone knows the background - which has to mean less spats and unpleasantness, imo on a board like this most of them start with misunderstandings.

Re: professionals - I think even before joining the world of SN, all of us have had run-ins with professionals (teachers, traffic wardens, delinquent builders, call-centre staff) which leave us frustrated and angry. So I think most people will have the common sense to realise that not all Health Visitors are dozy and not all Social Workers are useless and not all GPs are dismissive and not all SENCOs are ignorant of SNs. It's just most of the posts will be about the ones that are, and the ones having off days. At least if you know they are out there and how to route round them it's easier when you - inevitably - come across a useless professional yourself.

'one reason I never namechange, even if people think "oh, it's that idiot r3dh3d again" at least I'm a familiar idiot iyswim'

Likewise.

To be honest I don't care what other websites are doing or saying. They don't know us in RL unless we have chosen to tell them or have been a little too careless in giving out personal details. I just want to get advice, give advice and let off a little steam in an environment that is understanding. And in 99% of cases that's what is has been since I joined. Can we let this thread slide off into page 2 now, so as not to put off new posters who really need some help? And sorry I've put it back up there, temporarily.

fanjo Was not having a go at you, and thank you for your previous PM. I'm admittedly still very angry about how DD was treated.( letting it go now, as the people who perpetrated it are gone) Putting DDs comments on facebook was the final straw for her. She did note that (not you) but some posters on your fb were not being helpful to each other, which did make us as that is what drove her off MN. I'm sure you can identify with a mother (me) defending and fighting for her DD?

phlebas quote 'Sneezecakesmum if you think everyone here is vile & gives crap advice, offer no support & you enjoy watching them having difficulties then why do you post here at all?' wtf???

Point out where I said that in my posts? Quite the opposite, everyone seems nice and supportive, the oldies were some that were as you say vile.

DD is off the DKITUK asap, me too.

r3dh3ad

I name change, but always have the 5in bit at the start. I', not that clever to namechange to something whitty.

I hope this place calms down, it has proven so helpful to me in the past.

ghostof - the fb issue would explain a lot then. despite spending blinking hours on here most days, i had no clue what was going on. my aversion to fb obviously sheltered me from the worst of it. all i could see was threads saying 'that was terrible' but couldn't work out what was terrible.

i de-regged when mn installed the fb and twitter buttons. then re-regged from a different e-mail and username as i didn't want mn connected to my rl identity. after ages i did ask mn for madwoman back, but i do wonder now.

ho hum.

The real probelm regarding SEN and educational professionals goes back to 1984 whjen the government of the day decided to make "Special Education" an optional extra rather tan a compulsory part of the Teacher Training Corricullum (can never spell that word) as a cost cutting measure. As a result new generations of teachers have not taken up the voluntary option and as a result have very little or no idea what SEN is about.

None of the later governments have reversed that decision because to do so would first incur extra teacher training expense, and even worse a great deal more expense if teachers could really see what our SEN children require.

To complicate the further some lobby groups are more interested in pursuing a single gaoal that they sometimes provide educational disinformation to further their own cause, which can make thing a great deal worse for children whose SEN issues are ignored as a result.

The biggest problem has been the promotion of the concept that children are all the same, and it is only bad behaviour that causes any difference. This in one stroke falsely states that there is no need to identify any learning differences, and that a single teaching program will best suite all. This is pure marketing hype to sell a specific program or type of program. You can see these professionals on most teaching forums and even on MN, telling everyone that there is only one program or type of program to teach all children, which is neurologically impossible.

There is no SENCo qualification as such, and you would be alarmed if you were to join the senco forums to see the questions being asked. I a great many case I think most parents know more about their childs difficulties than many sencos i have come across.

What these uninformed professionals do not like are research papers which prove that they have no idea what they are talking about. Some even invent a new conditions so that they do not have to admit their lack of information about a specific problem which is worse for us as we can not find any information about this invented condition.

Unfortunately there is very little educational research done in the the UK nor a central educational advisory or research body like the medical research council to work with the various neurological research establishments who try to understand the working of the brain and the different ways we learn.

Over the last decade to help my own SEN children have have created some online research paper collections to help explain how research explains the problems my children face on a daily basis, at PubMed which has over 6 million research papers, and a very good search engine, and you can create your own research paper collections.

Due to my own SEN issues a thread like this one has too many contributors and too many posts for me to process easily so it becomes too stressful for me to follow.

I have never come across this dolfrog...

'The biggest problem has been the promotion of the concept that children are all the same, and it is only bad behaviour that causes any difference. This in one stroke falsely states that there is no need to identify any learning differences, and that a single teaching program will best suite all.'

in three decades of teaching, other than in very limited and hidebound individual cases.
I'm horrified that you think this is the status quo in mainstream schools.

quite. given that mine have attended 7 schools between them (eldest is 11), differentiation seems to be quite the norm. it's how the differentiation required is identified and implemented that is sometimes problematic - mostly to do with funding for TA/LSA for small group or 1-1 support. all of our schools have identified individual support requirements, (and have in fact differentiated appropriately) but there has been some angst on the school's part as to who will pay.

Am amazed that sneezecakesmum doesn't tell her DD to return here. If all the oldies (who she evidently despises) are gone and the "board is a better place now" why not return. Or are you too busy running the older members down to think of this?

Why come here to say "I am off and so is DD"? Or are you specifically doing so in order to flounce and make a point?

sneezecakesmum - you said yourself the new people here are helpful so what is the issue? There are people here who have been part of the board a long time and want to continue supporting the new people who join. Not all are part of other groups on FB or anywhere else. Likewise there is still room here for your DD.

I find this board a friendly place and want it to continue being so. It won't remain so if people are raking up grievances regarding members who have left for goodness sake.

I don't give a flying f* who's a newbie or an old member. We we are all here surely because we might just might be able to help one another, in this incredibly hard life we're all in with SN kids?