Please or to access all these features

SN children

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

Not everyone is nice

49 replies

spatlese · 25/02/2009 20:17

I would be very grateful if you would allow me to tell my story.
My son is adopted and has quadriplegic cerebral palsy and complex congenital heart defects.
In September we were told that his heart condition had deteriorated and there was nothing more the doctors can do. We have to prepare to lose our boy.

I initially joined a support group/forum for parents of children with special needs early last year. First appearances seem that it is friendly and supportive.However, cracks soon began to appear. One person in particular only ever replies to the post's made by the inner group, if she does ever respond to others her replies are at best nasty and sarcastic and at worst bullying. I noticed more than one person disappear after one of her attacks.

Recently a friend and fellow member has been experiencing a very traumatic event obviously she turned to the forum for support. Their response was to delete her post's and anybody else's who referred to her or her situation. Subsequently they suspended her access to the forum and only allowed her to return if she agreed not to refer to the matter in" any way shape or form"

As an experienced nurse, counsellor and mother of 10, I was horrified by their attitude. I emailed one of the trustees and expressed my concern. I told her I thought their attitude showed they were naive regarding the matter and that perhaps despite all the "hugs and vibes" maybe they were not as sincere as they appeared.
I received a reply from one who said she was offended and angry ' she then wrote a very self pitying post on her blog directed at me (i have never known people who feel so sorry for themselves) Of course any reply in response was met with them attacking like a pack of wild dogs.
Subsequently my membership has been terminated and members told that my name must not be mentioned on the forum. Friends I thought I had made have
not been in touch!!!

It is not a support group it is a very select mutual appreciation society and anyone who does not join in the adoration is quickly flushed out. It operates like a cult, anyone who disagrees with the leaders is expelled and then shunned by other members who fear the same thing happening to them.
I am surprised that I have found this so distressing but I have! I find it quite astonishing that grown women behave in such a unprofessional manner
This has taken place whilst they are aware that we are caring for our terminally ill child.

I am in discussion with the Charities Commission regarding my concerns.

OP posts:
mynametoday · 03/03/2009 22:46

I completely agree. I am sad to hear of her son but this woman has upset many (assuming it's the same which I believe it is). There are genuinely lovely supportive people on there, who ALL understand what (as parents of sn kids) what we go through. There might be the odd person who may not be quiteso friendly but I HONESTLY haven't come across.

I suggest the poster walks away from this before they make it worse for themselves.

2shoes · 03/03/2009 22:48

I haven't been on there much, as at the moment I am ok iynwim. but in the past I have and people have been very welcoming. I know that others on the sn topic post there.

wannaBe · 03/03/2009 22:56

have no idea what this is about, but:

To op, I find it very hard to believe that administrators/moderators of a website would act in the way you say for no good reason. But if they did this to everyone who wasn't one of them then surely word would get around soon enough and people wouldn't consider it to be such a haven of support. And in reality the answer is simple, if you don't feel welcome there then don't post there.

To those talking about other websites and stickies etc, perhaps it would be wise to ilaborate more on this? Otherwise there's a risk of this being a thread that is split between though are on op's side and will most likely accuse people of bully/being nasty to op etc, and those who know what it's really all about.

longcroft · 03/03/2009 23:00

hmmm If it is that forum,I found it very good.Although I requested to leave it out of choice!

longcroft · 03/03/2009 23:05

I must add I made some lovely friends on "that forum" and I have been really supported over the past months i have been on there. I left for personal reasons not because it wasnt a good site.

2shoes · 04/03/2009 08:13

wannabe , just not sure if I can name it on here, have emailed you, so let me know what you think

FioFio · 04/03/2009 12:08

This reply has been deleted

Message withdrawn

2shoes · 04/03/2009 12:11

This reply has been deleted

Message withdrawn

2shoes · 04/03/2009 12:12

fio I do think your comment was a litlle bit uncalled for.

FioFio · 04/03/2009 12:13

This reply has been deleted

Message withdrawn

2shoes · 04/03/2009 12:14

have you had a look as it seems they have had a lot of problems on there

FioFio · 04/03/2009 12:15

This reply has been deleted

Message withdrawn

2shoes · 04/03/2009 12:16

oh I think we are x posting

wannaBe · 04/03/2009 12:27

At the end of the day though, not everyone is going to have the same experience on every website. You could equally post similar threads about mn after all, because while some people are accepted and welcomed and find their way into the "core group" (whatever and whoever that might be), it is also certainly the case that not all newcomers are welcomed here with open arms, and that not everyone sees mn as a positive uplifting experience. So this could equally be true of another site that claims to offer support to parents of children with sn.

And if this site is a charity, and are receiving money from donations, and people feel they are having a negative experience there, then perhaps it is not unreasonable to voice that.

2shoes · 04/03/2009 12:30

I do aggree.
but should people not be aware of what they are defending iynwim.
also I believe the op is not just posting this on mn.
main thing is now people can draw there on conclusions.

spatlese · 04/03/2009 16:37

I keep saying that I am going to stop worrying and going on about this but what has happened over the last few days has really, really upset me. Perhaps I shouldn't have posted this on other websites or on your forum but to be honest seeing as I don't have the right to defend myself on their forum I did want to put my side of the story across to others. And actually it has been helpful to receive messages and emails from others who have been treated the same way by the same people. honestly I thought i was going mad because I agree with what some of you have said, why would people act like this for no reason??

I am just so upset about what has been written, lots of it is simply not true and I can't understand why they have said it, I have lost friends over this. It's easy to say that its just a forum, move on, but the friends I made on there are people i have spoken to on the phone, they have come to my house and my children's birthday parties so it does hurt to have these lies told about me, and have lots of people believe them.

I can't prove what I have or haven't done, you'll just have to believe me, or not believe me if you want to. I did send a complaint, which had nothing offensive in it at all, if anyone wants to see it and make their own mind up just ask, I will happily send it. And yes, there was a conversation on somebody's facebook, but there were no names mentioned, of people or forums, and there were a lot of angry messages, from a lot of people. Mine didn't have any swearing, my comment said that I thought they should stop feeling sorry for themselves and support this one member, that I thought that they had a moral obligation to support members who are struggling because of something that arose on their forum. Perhaps this wasn't the most sensitive thing to say, and I wouldn't have framed a complaint in those terms, but I was talking to friends and the conversation was deleted pretty soon anyway... I just don't know why I was singled out.

And I will admit that I joined again under a false name, so I could access the forum but of course there was no sinister reason behind this, I'm still a parent of children with special needs, I still want information about equipment and wavs and everything.

That is it, that is what I have done, whether you think that it is a heinous crime is up to you. There was no vicious attack on the charity or any of its members, no starting arguments, no nastiness, nothing, really. I had no communication with the charity aside from 1 very short email asking for the outcome of the meeting, I will also happily send a copy of this to anyone too, but it is a bit of nothing really. If they really were sent threatening emails, they certainly haven't come from me, by any stretch of the imagination, but I'm sure they will have copies of them and can address it with the person who sent them or the police, rather than imply it was me. I really don't know where they've got all this from. I can't believe they are saying these things about me, I don't what to believe myself, I find myself wondering, has somebody been corresponding with them in my name?? i'm just baffled. I don't know really what i'm even accused of because they will not talk to me about it, even after I gave them my phone no with the original complaint.

well now at least I have been able to reply to the things said about me, I hope that others will read it and think about it.. I can't make you believe me, I know it's their word against mine and when it comes down to it who are you going to believe? it just beggars belief that a group of people, trustees of a registered charity, would just downright lie to justify themselves. i'm not really sure how all this has happened myself.

but this is it, I don't want to deal with it any more, I'm tired. this has upset me far more than it should have done. my daughter has sent a complaint to the charity commission because she has seen what it has done to me, they can deal with it from now on. sorry for using your forum for this, just ignore if you want to, thanks for keeping an open mind

and I AGREE that there are lots and lots of wonderful supportive people who use the forum and I have also made very good friends, this is why i am so upset about it. i'm not attacking its members at all.

OP posts:
FioFio · 04/03/2009 16:54

This reply has been deleted

Message withdrawn

ilovemywav · 04/03/2009 18:38

you have just agreed with almost everything the statement said, apart from threatening emails, so not lies according to you and admitted to joining under a false name, which is wrong too

I've seen another post on a different place where you say there are using charity money for themselves, now that could get them in lots of trouble, so I can see why they don't want you back or talk to you tbh

Stay here and be supported or find another forum if mumsnet is not for you that can help you through the sad problems with your son and put it behind you

FioFio · 04/03/2009 18:40

This reply has been deleted

Message withdrawn

2shoes · 04/03/2009 18:44

ilovemywav is right
stay here, there is loads of support and people are nice.

spatlese · 05/03/2009 08:55

I suggest the poster walks away from this before they make it worse for themselves.

This post is particularly nasty and bullying and not one that portrays the charity in an attractive manner

I've seen another post on a different place where you say there are using charity money for themselves, now that could get them in lots of trouble,

You seem to have put your own interpretation on my comment. Only if an allegation of this nature is found to be true will any one get in trouble, if it is untrue then there is nothing to worry about.

you and admitted to joining under a false name, which is wrong too

They know I joined with a false name because i told them. There is a big proportion of the membership who never post, but not everyone is going to be honest and tell them the details are false. This illustrates how vulnerable the members are who post lots of intimate details about their family.
My complaint asked them to allow members to post on a thread of support for my friend and to warn members that the information the post is not guaranteed to remain on that board. It could be read by anyone,this is the Internet not a private medium.
They now have done this but only because they feel their reputation is being tarnished

Even taking into account the fact that I have lost friends, lies are being posted about me and I feel bullied and intimidated. I would do it again in a heartbeat if it prevents just from family from going through the trauma my friend has experienced

OP posts:
anniebear · 05/03/2009 09:25

stay here, just dont post anywhere else lol lol

;)

2shoes · 05/03/2009 10:23

i don't imo think it is a good idea to carry the fight on on mn.
just drop it and use mn

FioFio · 05/03/2009 17:33

This reply has been deleted

Message withdrawn

New posts on this thread. Refresh page