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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

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:

DillyDaydreaming · 12/03/2011 17:41

I need a "like" button for the last post.

Triggles · 12/03/2011 17:48

Yes, I have to agree with sickofsocalledexperts on that. I don't really know who is new or old, unless they specifically say "I'm new" . And I'm not much fussed whether someone is old or new here. We all run into issues that we have questions on and we all need the support at some point, regardless. It shouldn't matter how long anyone has been here.

sneezecakesmum · 12/03/2011 19:37

Dilly as others here have said there are a lot of issues with people playing facebook off against MN. and I for one cant imagine why plebus said what she did about my post! I no way said anything like that. To me it is just typical of some of the previous pack mentality that descended here sometimes. I can remember some very vicious threads which I wont mention, and I am pleased to say that seems to have finished and the newer and the majority of the older posters are, as I said supportive of all.

PS I am off to SK but will still use MN because as Ive already said it is a valuable and informative resource.

I only said I am glad to see the back of some people, excuse me for being silly enough to explain why I think the OP is wrong in saying how unsupportive this board is and how I feel obliged to explain why I am glad certain oldies have gone. Nothing at all to do with raking up old threads.

Goblinchild · 12/03/2011 20:13

Well,if you return with a question about children with additional needs, I'll be as helpful as I can.
If you bring the full soap opera and back story with you, I shall leave it to someone else to reply.

DillyDaydreaming · 12/03/2011 21:43

Okay - thanks for clarifying that sneezecakesmum - I hope that sneezecake feels able to use this as a resource too. I don't know all the back story as you do because I missed the thread in question. I just don't want people to feel they cannot come here.

I hope that no reporting is still going on anywhere else (FB/Twitter/any other forum) about this board. Inevitably MN gets discussed elsewhere but generally the pack mentality types leave the SN boards alone - maybe they feel we already have enough to cope with.

Lets hope this thread gets put to rest now.

sneezecakesmum · 13/03/2011 13:53

I have let it all go now! Put to bed on a personal level, tucked in and kissed goodnight! So agree that cyber bullying via fb is the lowest of the low.

amberlight · 13/03/2011 13:59

Aware that I haven't been around very much to support people recently, partly because of the chemotherapy for breast cancer taking its toll on my brain/stamina. Partly because(being autistic) I'm very conscious that I can say/do the wrong thing accidentally which made some people very angry with me, and I'm still nervous of putting my foot in it (to use an expression). But I really hope that I can still say a few useful things now and again.

HelensMelons · 13/03/2011 14:44

Amber your posts are always generous, insightful and enlightening, I think. I hope you arent' feeling too under the weather (to use another expression!) and you are being well looked after. Keep us posted on how you are and how your treatment is going x

amberlight · 13/03/2011 15:07

(I'm not bad thanks so far...really good team working with me to help with side effects from the chemo...)

moosemama · 13/03/2011 15:21

Amber you have never said anything wrong or put your foot in it on any thread I've ever read. In fact, quite the opposite. As Helen said, your posts are always really insightful and beautifully worded - I often end up asking you if I can use a quote from them, because you explain things so much better than I ever could.

I for one am really grateful for all the support you've offered in the past and please don't worry, no-one is expecting you to be around to support us just at the moment - we all want you to just concentrate on getting better.

Good to hear you have a good support team around you. Hope you continue to do well on your treatment and are feeling better really soon.

amberlight · 13/03/2011 15:53

definitely have - e.g. I wasn't putting enough specific things in each of my posts to say that 'each person on the autism spectrum can be somewhat different so what I write is a generalisation', and it led to big problems for me and some off-board hate mail which was very scary at the time. But at least it means I check my wording very very very carefully now (I hope). odd really because no-one else was made to do that.

sickofsocalledexperts · 13/03/2011 17:42

Amber, I am so sorry you having to go through chemo but am crossing fingers all goes really well. Anyone who sends hatemail as a result of MN posts is a complete knobhead and needs to grow up, please don't let such people put you off posting on here.

PipinJo · 13/03/2011 18:58

This reply has been deleted

Message withdrawn at poster's request.

amberlight · 13/03/2011 19:22

(yup, breast cancer of a tricky sort, 50/50 odds unless aggressive chemo makes an impact on it. Chemo so far going really well compared to some people's experiences - not v nauseous and only knackered some of the time)

EllenJane1 · 13/03/2011 19:28

So sorry Amberlight. I think you are brilliant still helping others when you have so much going on. Positive vibes coming your way.

PipinJo · 13/03/2011 19:55

This reply has been deleted

Message withdrawn at poster's request.

waitingforgodot · 13/03/2011 20:36

Amberlight, wishing you a speedy recovery. You are always a great source of inspiration to me and I find your posts insightful

sneezecakesmum · 14/03/2011 19:55

amber you are a shining light for mums with SN children, never, ever undersell yourself.
I wish you the biggest prayers for your recovery, treatments have come so far nowadays. You can see here how people feel about you

amberlight · 14/03/2011 20:55

thank you! but I'm no more amazing than any other mum here, honest.

ghostofoldiespast · 14/03/2011 21:17

Amber, sorry to hear that you're not well. Just to clarify, though: it was me who objected to you using 'us' about every person on the autistic spectrum but I never sent you any off-board hate mail. Your post makes it sound like the two were linked.

I was open with my points towards you at that time and don't really want to bring it up again but, as you have, I wanted to make it clear that what I said, I said on-board (like I always did - I don't tend to do the email/ FB/ secret group slagging off at all. I prefer to say stuff out in the open).

mariamagdalena · 14/03/2011 21:30

Hi amber, wanted to say that when ds's diagnosis was confirmed recently, remembering your many articulate, optimistic and common sense posts was a very strong bulwark against despair about his future. Hope the treatments continue to go ok.

ghosts, I'm not sure what your previous name was, but I'd also like to say thanks to you and all the other adults with asd who post here. And to anyone who might know me, I do namechange, but it's always maria, plus I rarely facebook. So feel free to moan elsewhere if I upset anyone, cos I won't find out . I'll stay on this board in my happy little bubble world cos my memory isn't up to MN politics.

Original poster

devientenigma · 15/03/2011 07:02

I'm sorry I have stayed away from this thread. Naively it was a cry out for some help. I am really struggling at the mo, however the thread turned into another bitching fest.
The thing thats drawn me in is amber. Just wanted to say hope all goes well, sending cyber hugs x

OP posts:

amberlight · 15/03/2011 07:35

I don't have any clue who the sender of the hate mail was - it was very well disguised, but I had no reason to think it was anyone on this thread, no. I'm a public figure and it's very easy for people to trace me here and link me to ways to contact me, alas, so it could have been anyone in the world. But the link was to what was said on mumsnet (which is of course a public forum) and I did get scared, as almost anyone on the autism spectrum would I guess. I was explaining why I don't post as often now. For what it's worth, I did apologise for getting it wrong over the use of my words and tried very hard to improve, but I can't guarantee to get words right all the time so it really is scary all the same, sometimes.

TotalChaos · 15/03/2011 08:02

Best wishes for your treatment amber, sorry you are having such a tough time healthwise.

BakeliteBelle · 15/03/2011 08:04

I don't see a 'bitching fest'. Not at all. I see a few disagreements but mainly a lot of people saying this board is supportive. Sorry to hear you are struggling devient

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