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

Original poster

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:
wrinklytum · 25/02/2009 20:33

Oh dear,that is very sad.

Hopefully you will find the Mumsnet sn board a lot more friendly.

I have always found it so.DD doesn't have CP but there are several posters on here with dcs who have CP.

Welcome to Mumsnet

FlorenceAndtheWashingMachine · 25/02/2009 20:44

That's shocking. I belong to a group specific to my DD2's condition and the support on there is tremendous. We had one rogue poster (religious extremist) who was quickly and sensitively encouraged to deregister by the founder.

I am really sorry that you have been treated this way whilst going through such a dreadful time and when you need the support so much.

I hope that you will find Mumsnet a very different experience.

kettlechip · 25/02/2009 20:58

Welcome, I'm sorry you've had such a rotten time elsewhere. I've always had great support from this board, I hope you find the same.

2shoes · 25/02/2009 21:11

well you are here now
we are nice.
(well sometimes lol)

coppertop · 25/02/2009 21:33

I'm sorry you've had such a bad experience.

Welcome to the SN board. I hope you can find the help and support you need here.

HecateQueenOfGhosts · 25/02/2009 21:40

Welcome to mn.

I know the type of thing you are talking about, I came across groups like that (autism) and buggered off pretty quickly. I don't like pity parties and I don't like bullies. I can understand how pissed off you are!

Hope you enjoy mn.

donkeyderby · 25/02/2009 21:59

Blimey, who needs enemies with 'support' like that!

I had a vaguely similar experience (though nothing like as extreme) with a group where I live. I was so desperate to meet other parents and it looked promising at first. However, it had a big political agenda - inclusion - and anybody who dared to suggest that sn schools or specialist activities had their benefits, was shouted down or treated as woefully ignorant for not understanding the politics of inclusion. That word 'cult' is very apt - It had the feel of an evangelical religious sect and the parents who started the group, (one of whom I was fond of), very much wanted total control. They lost the ability to listen to any alternative viewpoints and went cold on people who disagreed with them.

It was a mind-fuck and it ended in tears. I am pleased to be involved with a group of parents with a good sense of humour now, and no political agenda, just having the best time possible with our families.

Tclanger · 25/02/2009 22:05

This reply has been deleted

Message withdrawn at poster's request.

dontgive2shoites4daftpricks · 25/02/2009 22:11

Unfortunately, being a parent to an sn child doesnt necessarily mean they will be a thoughtful, compassionate person to other people, as I have found to my misfortune. There are people in this world who are embittered, or who like to have followers, or like to think that they are unique and will try and extinguish anyone from their 'group' that they see as 'competition'.

It's tremendously sad when that happens amongst a group of people that rely on a bit of sister/brotherhood from time to time, and should be there for each other, and support each other no matter what.

People are people whatever their circumstances, and their true colours will, eventually, shine through - be it good or bad.

I'm so sorry you've had such a negative experience. x

bullet123 · 25/02/2009 22:49

This is a very supportive board so I hope you find it better here.

TinySocks · 26/02/2009 07:11

So sorry about your child. I hope you find some support here on mn.
It is unfortunate that there are bullies, in real life, and on the internet.
The best thing is to avoid them, try to surround yourself by nice people and try to avoid internet forums and threads that are negative and embittered.

mumgoingcrazy · 26/02/2009 08:33

Hello from me too, I have found MN nothing but a massive help and huge source of support. I'd have been totally lost without all these mums. Welcome xx

mrsturnip · 26/02/2009 08:45

Sounds very familiar.

I think the best way is to realise its not you, it's them & thank the lord you're not like them. People feeling sorry for themselves all the time is always a warning really.

Hope you find somewhere you can get some support. Such a shame when something which could be mutually beneficial goes pear shaped.

I have found support groups good places to find individual friends who I then ring/meet with etc and get the support there. Most support groups I've attended in person have been negative, self pitying, competitive whinge fests BUT I have made some very good friends at some, and we meet up and bond over the awfulness of the group we met in. And occasionally you find one that works and is positive and a good place to be.

Original poster
spatlese · 26/02/2009 11:27

Thanks every one for your support.Well, they have really shown their true colours!!!

I sent some poems via PM to a friend who's little boy passed away late last year. She was saving one to put on his grave for his birthday. They have deleted them from her PM box. She is heartbroken. Luckily I will be able to email them to her.

What wonderful bunch of lovely supportive people they are!!!!!

OP posts:
Woooozle100 · 26/02/2009 15:45

hi spatlese. I like it on here. Hope you can find some nice like minded folk too. Big welcome to you

FioFio · 26/02/2009 16:29

This reply has been deleted

Message withdrawn

Original poster
spatlese · 26/02/2009 18:07

Thank you so much for all your support and thank you for allowing me to tell my story.
I have been overwhelmed by the number of people who have told me that they were subjected to bullying and intimidation whilst being a member of this particular "support" group.
I can't abide bullying of any kind , it is because I stood up to the bullies that my membership was terminated.
I intend to pursue my complaint these people must be accountable .

OP posts:
anonandlikeit · 26/02/2009 20:50

Hi Spatlese, the support on here is wonderful & mutual & there are no expectations or hidden agendas.
I hope you find it a good place, with support & the opportunity to air your thoughts without judgememnt.

Lulah · 02/03/2009 22:00

as an experienced nurse and counsellor can you not empathise with some parents who do feel some amount of self pity and negative feelings !
any bunch of mums and dads of special needs children no matter how severely disabled or poorly who try to bring everyone together to try and help in whatever way possible is a good thing.
each group will offer something different to each situation this obviously was not the right one for you. move on find another or form your own.

2shoes · 03/03/2009 08:22

don't get the last post!!

sarah293 · 03/03/2009 10:39

This reply has been deleted

Message withdrawn

2shoes · 03/03/2009 22:02

Lulah I get it now

2shoes · 03/03/2009 22:23

how very odd, if you go onto a very good forum, what do you see.....
a sticky talking about this.....

mynametoday · 03/03/2009 22:36

It is very odd indeed. If it happens to be that forum that I find it very hard to believe.. i have found the complete opposite.

2shoes · 03/03/2009 22:40

It has to be sadly.
the shame is that if people had known, I doubt if the op would have got sucha warm reception.