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

131 replies

devientenigma · 10/03/2011 07:23

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!!!!!

OP posts:
Goblinchild · 10/03/2011 18:56
Blush Thank you
bigcar · 10/03/2011 19:12

thanks goblin Smile

Goblinchild · 10/03/2011 19:20

'Goblin, you being a professional and all that, can I just say that I honestly would be so pleased if it were you working with ds.'

I've just read your binary thread! DD went through a phase of binary obsession, she still has this
www.thinkgeek.com/homeoffice/lights/59e0/
and can speak in mathematial tongues when the mood takes her. I could hire her as translator and have a skype link in class.
Yes, DS is the one with the dx...

Thecarrotcake · 10/03/2011 20:21

:o

see it's type of idea ( even in jest) that makes me say I would be very happy for you to teach ds :)

you just would bat a blooming eye to his quirks and I think he would latch on to you!

( I will refrain from telling him that your DD (nt) speaks in on off tongues!)

Thecarrotcake · 10/03/2011 20:23

Oh and I just showed ds that link

he droooled!

zzzzz · 10/03/2011 20:52

This reply has been deleted

Message withdrawn at poster's request.

Oblomov · 10/03/2011 21:23

Only been on sn for a short time, although been on mn for a while. Have been nothing but supported.
re you hoping that it is going to 'calm down' ?

sneezecakesmum · 10/03/2011 23:13

Personally I am glad to see some of the oldies have gone, having seen them rip to shreds my (adult) DD after she posted a lovely thread here. They wilfully misinterpreted it and as a consequence she has not posted since.

She was 100% supportive of anyone on the SN board.

I have personally found the people who have replaced the oldies lovely and supportive for the most part and I have not seen any further threads the like of which my DD suffered.

I have not seen any nasty threads (though admittedly can't read through all of them) I think the new brooms sweeping through here should be applauded for being what an SN board should be, understanding and supportive.

sneezecakesmum · 10/03/2011 23:14

PS. I said SOME not all before I get flamed too.

Goblinchild · 10/03/2011 23:27

I know your daughter's thread was well-intentioned, but as I said at the time, it was rather clumsy, lacked details and several posters read it as patronising and judgemental and reacted. Some quite strongly.
It's a pity that she didn't come back and explain that she hadn't meant to present the girl in her OP as a freak, and that she meant to be supportive of her.

sneezecakesmum · 10/03/2011 23:52

To me that says it all goblin. It was not in the slightest bit condescending, but written as a mum with a DS with CP, so written as someone who knew what she was talking about. If I could find it I would repost and I think the majority of new posters would take it as it was meant.

The majority of the posters did take it the way it was meant, and only a few judgemental oldies and yourself chose to take it the wrong way. What I found so disgusting it was mentioned on said oldies facebook page, inviting a lot of previously unknowns to attack my DD!

Again I am glad they are gone, many were judgemental, patronising and so up their own a with their 'my SN is worse than yours' attitude it was untrue.

sneezecakesmum · 10/03/2011 23:54

Of course it couldn't have 'details' as there were confidentiality issues!

Goblinchild · 10/03/2011 23:59

I didn't react strongly to the post at the time, and you and I have exchanged amicable pms about the unfortunate consequences of that post.
I have no idea what was written on fb, I tend to move on from mistakes in judgemet and let others do too, so what would be the point in going over it again.
If that's what has happened on fb, I think it's unacceptable.

Goblinchild · 11/03/2011 00:01

Your daughter did not introduce herself as the parent of a child with CP, she posted the story as an anecdote, with little explanation of her view on the incident. So people got the wrong end of the stick.

sneezecakesmum · 11/03/2011 00:02

what has upset me so much is my DD has lost a valuable resourse to support her because of what happened. And yes is was put on facebook. sorry it i was cross with you - long term memory loss!

Goblinchild · 11/03/2011 00:04

She could namechange, come back and not mention the past. Many do.

madwomanintheattic · 11/03/2011 04:20

? i'm not sure what's been going on tbh. i hadn't noticed any deterioration in support, just that a few 'oldies' had gone, some to return, some not. there was a lot of 'disgusted of tunbridge wells' stuff, but it was fairly cloak and dagger and i have no idea who/ what/ where/when, other than it followed the riv thing (don't know the outcome of that either...)

sneezecakesmum - don't think i saw the thread in question. i de-regged when they put the blardy fb button on here. bah. feel free to pm. if she isn't coming back here, skinuk is very good for cp - loads of kids to get to know. Smile

signandsmile · 11/03/2011 06:58

As ever I am 'late to the party' Wink..

I have gained so much from what I have lurked and read and what I have posted on...

For the record the only thing I would even disagree with is starters comments about professionals deserving respect. some of you will know I am a social worker and I work to train social workers and I have to say any of my students who said I deserve respect for being a social worker would get (gently but firmly) disabused of that notion Grin

as others have said respect is earned.However I also do come on and challenge the 'all SW are crap' posts as well... Crap ones and brill ones, as in any profession.

(and BTW like carrot if I had believed/accepted without challenge some of the professionals my ds would not be where he is now... and that is my mummy opinion, my professional opinion and the opinion of the other professionals now involved!)

bellissima · 11/03/2011 08:59

Agree with sneezecakes - I found the 'hierarchy of victimhood' on here too hard to take. Posters often talk about how their children are victimised at school because they are perceived as 'different', and that indeed is vile. But when those same posters all defended a (non-officially diagnosed) ADHD child for pulling the glasses off five year olds in class I realised that some conditions are far more sacrosanct on here than others. Some 'victims' are far more worthy of defence. And let's face it - glasses, hearing aids and so on are far too redolent of boring old post-war health care, horrid little pink plastic assistance aids and so forth. Not the kind of disabilities we like on MN. People even sniggered at me (and my child has a Moorfields needing sight disability, not my mild myopia, but that's not the point - attacking any child in glasses because they look different is vile). Too often 'I am my child's only advocate' becomes an excuse not to consider anyone else. Until of course they grow taller than you and then attack you - then you will be immediately advised on here to call the police - and no one seems to see the irony. The other issue is indeed the automatic insulting of professionals - how does anyone expect people to even consider training for these jobs when you read some of the nasty abuse they face on here - from the very people they presumably set out to help.

ScramVonChubby · 11/03/2011 09:19

I don;t post as much in here any more (Peachy) becuse we;ll, so much of my life is ASD that I need to start building something else for my own well being. If kids, and work are all ASD then something ahs to be a bit different no?

But I keep an eye.

interestinga bout unsupportive threads; just the title of this one gave me a minor panic attack.... mainly about some of the things that HAVE happened on Mn over the eyars but heck, tells me much.

I just though SNMN was in the embryonic stages of a rebirth; maybe I am delusing myself.

justaboutsmiley · 11/03/2011 09:21

This reply has been deleted

Message withdrawn at poster's request.

Pagwatch · 11/03/2011 09:25

I am not in sn very much at the mo either. Like scram I can't sound all my energy on sn anymore. It starts to feel overwhelming.

But tbh I think the whole of mn is fucking weird at the moment. Lots of odd posts, odd and antagonistic posters.
Thinking of buggering off for a while tbh. I spend half the time feeling like I am in a pub with people spoiling for a fight.

ScramVonChubby · 11/03/2011 09:27

bellissima I sort of know what you are saying- well, I would: known at schoolas the four Eyed Git for obvious reasons, I ahve severe astigmatism (should lose my driivng licence at some point, dreading it) and ds1 has the same. Has had glasses since 18 months, though his S means he will not wear them.

And I didn't even see that thread.

but it is quite possible to understand why a child does something without liking the action. If a child acts on impulse because they cannot control it, or understand the ramifications (common even in seemingly HF children), etc.

Posting on this board can be a thing of great complexity- quite often our children, or those of others, do things we hate but it is possible to understand if not accept or like. DS1's ASD led violene for example..... I understand teh reasons why, and I do think of it as different to another 11 year old, but equally I have spent years making sure otehr kids are safe from him and trying to stop it all.

And the respect for professionals thing... I am not a professional, because I don;t get paid for it; but I should ahve my MA in the next 12 months (ASD). I don;t expect respect. It's nice to eb able to offer up to date info and ideas but all I ahve achieved is to sit in a class a few hunderd metres away once a week for two hours. Wowee.

I ahve no idea what most of these threads are but I am in a few FB groups (heck, a decade i;ve been here: of course I have made a few friends!). So whatever is going on I annot say I have a clue.

HelensMelons · 11/03/2011 09:36

Peachy I don't think you are deluding yourself, I think that this board will become a different/re-born board but it will take a bit of time.

I feel that it is a period of transition, and that this thread, even though it has been uncomfortable to read (my opinion only) at times, it is dealing with 'the elephant in the room'- that this isn't a perfect board that it has gone tits up at times, that sometimes feelings have been hurt and posters have felt rejection(?)but the common theme is that we all have dc's with special needs and we all need practical and emotional support x

ScramVonChubby · 11/03/2011 09:46

'Too often 'I am my child's only advocate' becomes an excuse not to consider anyone else.

Interesting. As many will know I have really struggled with guilt that ds1 has aaplce in a unit that could only take 2 chidlren this year, and that the other family spent thousands to get their place.

But... what else do we do? Do I stand aside and say 'look, I know ds1 will end up in jail or worse (his bullemia seems to be abck) if he dosn;t get help but that child is technically more severely ASD than ds1 so here's the palce?'

That's wrong in so many ways!

Almost everyone on MN participates in an effective dual approach: wefight for our own kids as we must but equally we advise others, complain about services and their lack, spread news about new legislation etc.

As long as that angle goes on then tehre's nothing bad about the general MNSN appraoch.