Here some suggested organisations that offer expert advice on SN.

Can we talk about MNSN, and the community/support/chat etc?

(1000 Posts)
silverfrog Tue 05-Mar-13 11:23:43

This thread may not be a good idea. I am severely sleep deprived (ds has decided yet again that sleep is for the weak, and I have had about 4 hours sleep since Sunday), and had the morning from hell getting dd2 off on a school trip - change of routine, needed ot wear tracksuit not uniform, different drop off/pick up - you all know the score. If you all think it is a bad idea, please feel free to report and have it deleted.


Can we have a thread where we try to sort out some of the perceived isues with MNSN?

I keep seeing, on the main boards, posts saying that MNSN is not suportive. That some faces don't fit. That it's not all it's cracked up to be.

Fine. I get that not everybody is the same, and may not want the same things form this board as me, or other posters. But it isn't really said here, and so we don't reallt get right of reply.

It's a bit like talking about us behind our backs.

I know there have ben disagreements and differences over the years. I have been part of some of them, but on the whole I thought we muddled through quite well - expcially given that we are all under a reasonable amount of stress most of the time, and that we all face fairly different challenges on a daily basis.

So - what do people want form MNSN? Is there anything we (as a community) can do to welcome people who feel left out? Anythign we can do to help posters who lurk rather than post?

I am rather hoping htis might be a moving forward discussion, rather than a re-hash of any he said/she said grievances. BUt as I said earlier, maybe this is entirely misguided. Sorry if it is.

signandsmile Sat 09-Mar-13 20:20:40

interesting posts, ds has always loved the subtitles, even before he could read grin I remember one day when ds kept saying "sutata" repeatedly and I couldnt' get what he wanted, till I realised I had the telly on minus subtitles for once ...

Maryz Sat 09-Mar-13 20:45:50

Ineed, pick your battles. Compared to some things, having control of the tv is probably something you can give in on.

My younger two are very tolerant of ds1. They know that if he is watching something he can't change mid-programme. They often just chuck the remote at him if they can sense he is stressed. We have a family computer and my ipad, so they can go online if he is here and watching something.

I can't imagine having two of ds1 in one house shock.

ouryve Sat 09-Mar-13 20:54:42

DS1 likes to control the channels, given half a chance, too. We've recently been able to watch channel 5, again, after he realised he liked Police Interceptors and Stobart Trucks & Trailers, but Milkshake is still on the Disapproved of list. Tweenies, Cloudbabies and Baby Jake are just plain banned. For some reason, we see no point in arguing with him about that grin He tried to ban Everything's Rosie, then remembered how much he likes it!

He Disapproves of anything on TV or radio that makes DH laugh. IT'S NOT FUNNEEEE!!!!!!!!

He also Disapproves of Liza Tarbuck, Jeremy Vine and Paul O'Grady on Radio 2, so we have to turn over when they're on. Unfortunately, if it's 6 Music and there's something with a bit of rap on, he really Objects to that. So the alternative's often one of the Absolute stations, which carry highly Disapproved of adverts. He's had to learn that if he complains angrily about those ads, ads on TV or the confession or interviews on Simon Mayo's show, mum looks cross and turns the radio or TV off because she knows how he feels and doesn't need to hear about it at length, every single time.

He goes bonkers when I've left BBC News 24 on after collecting them from school, but I quite truthfully tell him I had it on for the weather forecast just before 3pm.

Ineedmorepatience Sat 09-Mar-13 20:54:49

Thanks maryz,you are right of course and I guess that is what I have been doing subconciously, its just when it creeps up on you and you realise that she is chipping away and getting more and more control over household things.

Dd1 left home 5 years ago so its been a while since I had both of them at home but when she comes round she expects to be in control as soon as she walks through the door, which of course doesnt go down well with Dd3. Also Dd1 has a Dd who is nearly 5 and she and Dd3 are polar opposites and dont get on well at all.

Hey ho, they are all here for dinner tomorrow! So that will be restfull, wont itconfused

Maryz Sat 09-Mar-13 20:58:14

About five years ago, I was at my mum's house with dh and the kids, and my brother's family. My brother walked into the sitting room, picked up the remote and changed the channel.

I just looked at him like shock and then realised - he had been doing it all his life. He was the oldest, he was a little obsessive, he always controlled the tv.

It was quite funny, really.

ouryve Sat 09-Mar-13 21:01:41

Maryz - we're so glad that DS2 is far more passive and less dramatic than DS1. He has his moments, but they're usually down to communication breakdowns. They happen easily when you're too dyspraxic to speak or sign clearly and too OCD to allow a PECS card to be moved away from any other PECS cards.

ouryve Sat 09-Mar-13 21:03:32

Ineed you need a secret bottle of wine and a long straw. I have a backpack with a special hole in for long straws. Maybe you could his the bottle in something like that grin

ouryve Sat 09-Mar-13 21:03:48


moosemama Sat 09-Mar-13 21:07:43

Ouryve, I get told off if - God forbid - I have watched the tv and failed to set the box channel back to CBeebies when I switch the tv off. Ds1 hates CBeebies now and doesn't watch it, but it's he only feels safe enough to switch the tv on if he knows only a CBeebies programme will come up on the screen. He has a lot of fear and even phobia around tv and films, so it tends to be automatic to just switch over before I switch off, but if it's late and I'm exhausted or having one of my 'moments' I forget and I am in trouble! hmm

He won't even walk through the room unless I tell him I am only watching Neighbours. blush It's not usually Neighbours at all, but that's what he remembers it being safe to watch from when I was bf ds2 many moons ago and he never sticks around long enough to find out I've fibbed. He has liked the ITV retro programmes though, as I have been watching some real old rubbish this month, like The Upper Hand and Only When I Laugh, although I had to have a real power struggle with him to be able to watch them without a huge fight every single time. I am of course also permitted to watch The Big Bang Theory. grin

Ineedmorepatience Sat 09-Mar-13 21:08:45

Lol, @ your brother maryz my step dad is the same, he controls the tv and at 10 pm at the latest he turns it off and all the lights and goes to bedgrin

I had to stay with them for a short time when ex dp left me and Dd1 with a house about to be reposessed. I had left home for about 4 years and he still turned all the lights off and left me sitting in the dark. He is a nightmare! I dont know how my mother puts up with him.

Ineedmorepatience Sat 09-Mar-13 21:12:29

If only ouryve I am teetotal and have been for years.
I am thinking in terms of doing all my years good deeds in one day!

I may resort to headphones if it gets too stressfulgrin

ouryve Sat 09-Mar-13 21:52:59

Oh, Big Bang Theory has joined the Disapproved list, too. We have to try not to say "sorry, Sheldon" when we get lectured about it grin

We've worked out that it's safest to just record anything we want to watch when the kids are around. Of DS1 doesn't forbid it, DS2 will probably drown it out, anyhow. (He might be easy going, he might have limited speech, but quiet he aint!)

Ineed your halo will be so well charged I'll be able to see it from up here grin

Ineedmorepatience Sat 09-Mar-13 21:56:37

grin thats funny ouryve

Jamillalliamilli Sun 10-Mar-13 12:26:58

The threads clearly moved on from it’s original point, so I hope I’m not now derailing it. (I'm sorry if I am)

I’ve never said what I think before, but it’s very clear to anyone lurking that this board is hugely supportive to parents of newly diagnosed or younger children, and there is huge support going on for and from some people, so I’ve never wanted to do or say anything to damage that, but I’m afraid it is easy for an individual to feel there’s a set of invisible ‘rules’ to posting here, (some posters do imply this) but not know where to find them.

This thread has explained a lot of things that have added to the barriers to me posting here. Thank you.

TheNebulousBoojum Sun 10-Mar-13 12:30:20

Are the barriers still there for you?
Or do you feel a little more comfortable?

Jamillalliamilli Sun 10-Mar-13 12:57:32

Some of the barriers are from our end, our situation and remedies often feels out of kilter and my SN children are no longer legally children, though daily reality begs to differ, and my grandchildren are not my direct responsibility, but the uncertanty of what's going on with honking ( at one point I thought this was mweant to be a form of LOL) and carrots makes more sense, but tbh I'm still not sure what may or may not be posted about. At the moment I think it is ok to post about a specific problem and ask for opinions on what to do, but not sure about anything else.

lougle Sun 10-Mar-13 13:04:19

"I'm still not sure what may or may not be posted about. At the moment I think it is ok to post about a specific problem and ask for opinions on what to do, but not sure about anything else. "

This section is simply for parents of 'children' with special needs. Those children do not need to be children in the legal sense -adult children are just as important.

You can post to:

-Ask advice about a specific situation
-Ask for other people's experiences in a certain area (ie. who has tried x therapy?)
-Offer information that might be useful to other people (ie. great conference in Manchester next month...I read a report about the new funding....Did you know that DLA qualifies you for more tax credits...)
-Ask for advice about school/college/work issues
-Generally rant or moan about how groundhog day it is to deal with x situation every day
-Tell everyone about a lovely thing that happened which made you feel more positive.

There really isn't very much at all you can't post about. MNHQ don't allow links for your own business within talk sections or general advertising links, but if it's part of an overall 'this is really useful' post then it's a bit different than if someone just rocks up with 'go here for fabulous SN cures' wink

TheNebulousBoojum Sun 10-Mar-13 13:09:56

'my SN children are no longer legally children,'

Mine are 18 and 22, and the older one is investigating being diagnosed as an adult.

Jamillalliamilli Sun 10-Mar-13 13:16:08

Thanks Lougle, it does actually help to have it spelt out as various things have left me (and I suspect others) a bit unsure, and I've no desire to upset anyone. smile

Ineedmorepatience Sun 10-Mar-13 13:20:23

Hi just, can I make a suggestion?
If there is anything you are not sure about, ask.

If you ask specific questions people can nearly always come up with an answer.

The honking thing is maybe a bit odd to newbies but it is harmless and not definitely not meant to exclude people and make us seem cliquey.

I think by the very fact the we all have children with Sn's we are all in it together and I have definitely never seen anyone being put down or made to feel unwelcome.

Sometimes we may be outspoken but I think many of us have been made that way by the system.

Ineedmorepatience Sun 10-Mar-13 13:22:59

We did talk about getting the story behing honking pinned at the top of the board, I think that would be a great idea, it talks about the way geese all pull together and work as a team smile

Jamillalliamilli Sun 10-Mar-13 13:23:44

Nebulous I confess to quietly following some of your posts under your previous name and having taken heart from them, but they were in chat.

18 yr old (asd) HE ds is remaining at level 3 education for another year, so a child and not a child at the same time, and mid 20's dd fluctuates between 2 and 5 in real terms.

TheNebulousBoojum Sun 10-Mar-13 13:57:53

I'll post anywhere, me. grin
I'd hate to think anyone was uncomfortable with asking questions though, because sometimes I do woffle on and lose the plot rather.

We are beginning to enter the stage of DS and wimminfolk. I'm braced and fortified...

Jamillalliamilli Sun 10-Mar-13 14:18:07

Ineedmorepatience, unfortunately my experiences here of just asking what people felt about x haven't been so simple, and I get enough daily grief to not want to add to either mine or anyone else’s, so assumed it was me and quietly withdrew, but will have another go. smile

Nebulous good luck with that, we have the joys of dd and boyfriends who also have SN and appropriate behaviour. Rule 1, as a result of experiance, you will be leaving your phone/camera where I can see it. hmm

So far with ds it's been more likely he'll bring home a puppy!

zzzzz Sun 10-Mar-13 15:01:55

I think if the honking or carrot talk is confusing, I think I will be stopping. I'd hate to think anyone couldn't post just because we were messing around.

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