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A request for opinions and advice regarding Amber's departure from an outsider, but concerned friend.

340 replies

Catitainahatita · 11/05/2009 17:52

Hi.

I am one of Amber's friends from outside the SN board. We have been distressed and upset by her departure and are unsure of how to respond to it.

We know that Amber was trying to seek a solution with MNHQ for some of the problems that she has faced on the boards recently. We would like to continue this, but are unsure of how to proceed.

To be clear: We are aware that there are many, many issues here that we do not understand or know about. It is not our intention to try to do anything that would be detrimental to other users of the SN board.

For these reasons, we seek your opinions and advice. We do not wish to be presumptious or insensitive or disrespectful in anyway. We would just like to help our friend.

One final personal comment. I realise that my own participation in a recent thread here was rude and beligerant. I apologised there and do so again here. I hope this lapse of personal control can be forgotten if not forgiven.

My only motivation here is concern for Amber; although, I repeat, this does not mean that I am looking to help her at the cost of anyone else.

I really hope there is a solution that is amenable to all. Could you all give us some help on how this might be done?

Thank you very much.

OP posts:
MaryBS · 12/05/2009 10:10

Alfiemama - you haven't offended me anyway, you strike me as very sensitive. At the moment its too "close" for a definite answer, but I believe Amber if we could get things resolved in such a way that she feels comfortable, and others don't feel stifled/censored. And can I say, if Amber feels comfortable, I probably would too. I hate 'lively' debate and run a mile from it. That doesn't mean I won't debate, just that I prefer to pick and choose, I'm not very good at "grey areas".

Amber's corner, by its very name, would put pressure on her I think. She's not a "look at me mummy!" sort of person. And she accepts she doesn't have all the answers and wouldn't like people to have the impression that she does have all the answers

Just one thread, like the tearoom, would be confusing, because if there is more than one conversation going on at once, of any substance, then it'd be really hard to follow.

lingle · 12/05/2009 10:13

Sounds like a "Corner" within SN is the answer. Name to be agreed.

Anyone disagree?

2shoes · 12/05/2009 10:14

Random idea.... why not leave the sn topic alone and changed the sn adult one?
move it so it is opt in opt out and widen it so it inludes teens(would help me) then it hopefully would be better used. also allow threads about threads on it, so if for example amber is unsure of something on a thread she(or any other poster) could do a link and ask for help. there could be a warning thingy at the top so that lurkers know why this is done.

FioFio · 12/05/2009 10:15

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MUM23ASD · 12/05/2009 10:17

i for one WILL be familiarising myself with the DISABLED PARENTS section...to see wher i may fit it.

I often lurk in MENTAL HEALTH when i don't feel I fit SN

bunnyrabbit · 12/05/2009 10:26

I've been following this for awhile and have to agree that IMHO censorship is not the answer and freedom of speech is the very heart of MN. Where else can we talk about our hopes, fears and real feelings with anonimity.

However, input from adults with SNs themselves is invaluable to this board. So would it be such a bad thing to have a safe area?? Where MNHQ can remove posts which are offensive/upsetting/antagonistic?

I'm still not sure if this would work but what about a seperate section called
"The SN Tearoom". It could have notes at the top politely explaining what the board is for as as does AIBU and the SN board. It could be for posing specific questions, exchanging. information etc..

BR

FioFio · 12/05/2009 10:28

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Tiggiwinkle · 12/05/2009 10:34

But Bunnyrabbit, with regards to removing posts which are deemed offensive: I think the whole point is that the things Amber finds offensive are not necessarily offensive to others, nor would they be generally regarded as offensive.

The whole thing seems to be about a very subjective view of postings. You cannot regulate a board based on such an individual thing. It is impossible. I really do not see a clear way through this, because you simply cannot stop people posting normally inoffensive comments because someone else just might be upset. Or tell them where they must post for that matter.

slightlycrumpled · 12/05/2009 10:36

I actually think Fio is right. It was only one thread/ post that caused this. Amber has been having a terrible time in RL recently, perhaps she geniunely is just too vulnerable at the moment. She needs time and space to grieve and heal a little anyway imo.

SN teens sounds like a good idea though.

MaryBS · 12/05/2009 10:38

Fio, if a 'tearoom' is what's decided, then I think the sooner it is in place the better. If it really is a safe haven, Amber can come and join us and receive support for her bereavement as well. If nothing is done until Amber is feeling 'better', how is doing nothing going to make her feel? (I don't mean that in a harsh way).

alfiemama · 12/05/2009 10:46

I'm glad I did not offend you MaryBS

I think the teens board is a very good idea and hopefully something good can come from this.

I also think like MaryBS has said the 'tearoom' would be beneficial also for people to just catch up, make friends and chill out. I know there is a chat section elsewhere but I think to relatively new people it could be intimidating (frightens life out of me, a little like AIBU board)

So how about our own SN chat section?

FioFio · 12/05/2009 10:47

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Tiggiwinkle · 12/05/2009 10:56

Yes I must admit I am a bit confused, because I noticed Amber had started a tearoom thread, then later that day a thread was started saying she had left.

Did something go wrong on that thread? What made her change her mind about that idea?

Flamesparrow · 12/05/2009 11:02

I am getting a bit lost with all of this tbh. A big part of me is feeling that Amber has been through a hell of a lot of shit in rl these last few months, DD would be a mess if she had gone through that much change, and I get the feeling she is much closer to the NT end of the spectrum than Amber.

I think MN in general is probably too much atm. Which sucks because it is a lifeline, but sometimes it just happens.

I feel like Amber needs to go be safe in rl for a while and get her head round all the rl stuff, then maybe MN wouldn't be so traumatic for her iyswim.

HelensMelons · 12/05/2009 11:11

I think the teen idea is brilliant - there is definitely a gap here on mn for that.

I think the tearoom/quiet corner thread is a good start to get Amber back to mn, in a gentle way. I think it's important that she has the option of support whilst things are really shit for her.

Lingle's "talk to someone with your child's sn" is essentially what Amber is about. She helps as do many of the other mummy's on the spectrum.

Buddy system maybe to warn that a particular topic is controversial.

sarah293 · 12/05/2009 11:11

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saintlydamemrsturnip · 12/05/2009 11:45

Right, well I've realised that some of the people posting their opinions on how the SN board should be run don't have children with SN at all.

With the greatest of respect if your sole understanding of disability is through having chatted to Amber elsewhere on MN then you really are not going to understand the complexities of support groups and the number of diverse and very different life experiences that have to be accommodated in one place. We all have to accommodate and generally that works very well on SN.

And yes I am rather beyond pissed off to find I'm being discussed elsewhere on MN (and misrepresented fwiw). If anyone has a question about what I think about LFA and living with LFA come and ask me, don't spout off that I think my life is worse than anyone else's (I don't) on a thread behind my back. I am off to hit some red buttons.

madwomanintheattic · 12/05/2009 11:49

there are many many nt parents who need to take time away from the boards for very similar reasons.

it is unfortunate that this very normal situation has become too much for her. i assume she has internalised way too much of this ongoing situation because of her as. many posters have attempted to point this out, but as she has found herself so overloaded (with both mn and rl) she can't interpret what is going on at the moment. to be fair, nothing would be going on at all if she hadn't kept demanding someone else explained, or let her explain. someone needed to step in and call a halt, which is presumably what her own counsellors did.

that was really clumsily put, but there is a whole board of sn parents (and apparently half of mn) tying themselves in knots when the best thing to do is to back off, tbh. let the few posters who are in touch with amber give her some support, and if she feels she is able, then she can come back to the tea room thread she started, and take it from there.

i have to say i would be appalled at the prospect of attempting to flag threads or posts that may be misconstrued by anyone, in any situation. applying that to the entirety of mn would be utterly unworkable.

i didn't read the original thread, but having gathered the content, can well understand why a parent wanted to ask for opinions on why this literature was being distributed by an autism support group. the sn board of mn (where many parents of as/asd children hang out) is exactly the right place to ask such a question.

amber is the only one that knows whether providing support to parents of sn children (who will have diverse and varied views, both positive and negative about their child's disability), is something that will come at too great a personal cost for her personally. and as she said, her own counsellors will suggest that she stops posting if it becomes too much. in the same way that dd2 can walk, and walk, and walk, but i know that the continuous falls are going to result in injury or extreme fatigue and pain. i advise her to stop walking and use her wheelchair.

if it is the social interaction on a fast paced board that is difficult for her to cope with, but she wants to continue to provide support, then maybe an alternative avenue needs to be explored. like her blog, like a series of short articles on given themes, whatever. someone earlier already explained why combined support groups for 'parents of' and individuals themselves rarely work. an individual is always going to feel differently about their own disability to someone experiencing it second-hand. both viewpoints and feelings are valid and need a safe space to be explored. it is always interesting for parents of sn children to meet up with and discuss issues with adults with the same disability as their child, but it is rarely a good idea to vent about your child in earshot. we would all adjust our language in such a situation 'why does he do this?' rather than 'ffs, this is driving me mad'. a parent's support network such as the sn board has to be able to provide a safe space for 'ffs' moments (without requiring to pause, consider, and determine whether your own feelings are valid enough or warrant a flag).

amber is very welcome on the sn board, and provides valuable advice, but sometimes we all have to make a decision about what is best for us personally. and maybe that requires a more specialised niche than an open forum pan-disability parent support board.

this is not me hounding amber away, and i don't want it to be construed as such. i am worried for her, and hope that someone is making sure she is ok, particularly with what is going on in rl. i would not be selfish enough to want her back here giving advice if it was too much for her to cope with, but equally i see little chance of adjusting mn to provide a more as-friendly experience.

bunnyrabbit · 12/05/2009 11:50

Yes I agree that there does not seem to be an easy answer. I am only suggesting possible solutions for discussion.

There are other MNers, as well as Amber, with SN who may find the SN board too much. I was suggesting a tearoom board not a thread. Does anyone else have an opinion/think they would find this useful?

Riven,
I hadn't even thought of things like that yet!!

BR

saintlydamemrsturnip · 12/05/2009 11:51

"The problem for people coping with LFA is that it is difficult to see things from the child/carees pov."

I see my son's pov better than anyone else thanks. And those insights have come from reading books like that written by Lucy Blackman who has severe autism herself.

This was why I felt that Amber's posts could be very useful to many- as Lucy Blackman's books have been to me and in understanding my son. But there is more than one way of viewing and dealing with autism and you can't start saying that people who have a difference experience have it 'wrong'. My sons experience of life is nothing like someone with Asperger's. That doesn't mean I don't think someone with AS should share their experience- it will of course be useful to many on here, but I object to being told that if I see my son's life as something different than the experience of someone with AS then I'm just not understanding how he processes the world.

Oh actually I wasn't told was I, just discussed behind my back.

MaryBS · 12/05/2009 12:01

I would find a tearoom board rather than thread useful. A thread doesn't give much scope for discussion. Could you imagine what it would be like if there was only 1 thread for discussing "in the news" topics, or only one "chat" thread? It is unworkable.

A series of articles is a nice idea, but its non-interactive. There are many articles out there already, is there a need for more? And if there aren't, do they need to be in MN talk? Similarly a blog wouldn't serve anyone's best interests.

Yes Amber needs time out to recover, no-one is disputing that. But if there is no change, what incentive is there for her to return, knowing that it could happen again? And again?

Are people opposed to SOME sort of change to help her AND others like her (including me)?

I'm supporting her via email as much as she needs, if people are concerned. As already mentioned I can pass on messages/email addresses if people want. It's easier for me if you email me rather than put it on here... then I won't miss anything!

sutton mb at talk talk dot net

saintlydamemrsturnip · 12/05/2009 12:04

Will the tea room include messages like this?:

"Amber - I have read that thread. Please believe me - there are some people on MN (and in the world) who just have to be right, can't bear to be contradicted or educated and also think that they've got it worse than everyone else. No one would make them change their positions from the ones where they have concreted their feet to the floor. Please leave them there, stuck to their own ground and don't go near them with a bargepole!"

Not helpful perhaps.

Right I'm off to do some work. I think people have bent over backwards to make suggestions on here. Perhaps one of them will be acceptable.

lingle · 12/05/2009 12:15

Right.

"tearoom" also known as "corner" within special needs it is then? With its own guidelines?

+section on teens

Does anyone disagree?

wannaBe · 12/05/2009 12:22

what would the guidelines be though?

Where do you draw the line at what should change in order to prevent someone taking offence.

As far as I can see no-one has been disablist here. And while I can understand that someone might find it hard to view certain posts for whatever reason, I do wonder whether it's more a case of the place not being right for the person iyswim.

After all, if you went to a cafe and didn't like the decor/the people/the food, would you seek to have the cafe redecorated/change their menu? Or would you find another cafe?

madwomanintheattic · 12/05/2009 12:23

mary - my point was that if the social communication issues across the open forum were proving too much, then a less interactive option might be a more preferable solution for amber herself. that way she could feel that she was offering her advice for people to take, and she could just use her chat/tearoom/coffee thread for personal questions which were raised by it. that way her interaction could be more controlled, but she would remain a valuable part of mn and still provide a space where she could answer specific Q/A.

as someone else said earlier, i don't think that people realised exactly what pressure they were putting her under by starting multiple thread titles 'amber - ' and a question. nice to be wanted etc, but when you are trying to spread yourself so thinly we'd all need time out tbh. she needs to sort out herself what her limits are in conjunction with people she trusts.

a tearoom board with a couple of threads for lissie, amber, whoever else wants one would be fine - but as part of the main board? or are you envisaging an sn tea room?

i'm not against change that would help anyone, as or not, but i am fairly bemused that the hundreds of other people who get to the point they take time off mn because it does their heads in aren't extended the same amount of worry-space tbh. the last thing (presumably) anyone with as needs is a huge storm in a teacup? surely all this rehashing and personal attention is making it far worse for amber?

i have absolutely nothing against another tearoom thread, whether it's on a tearoom topic on the main boards or in the sn topic, but remain against any over-complicated and unworkable system of attempting to second-guess anyone else's thoughts in order to categorise a post and apply some sort of flag.