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

[silverfrog]

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.

Anyway.

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.

yep I was well i my 40 somethings too polter!

shhhhh have some cake you will be fine

THAT was directed at zzzzz

No talking about cake in the middle of a thread. It's bullying behaviour!!!

is it? LOL I have missed something clearly! Actually I like having my cake and eating it.......:)

If you start your thread Maryz,
'Explanations for ASD behaviour from a 19 year old who has survived, maybe?'
perhaps I could chip in on it too?
DS is 18 and was an explosive Aspie with a death stare.
Now he's a managing in RL well, with a good understanding of how to cope Aspie.
But it's taken a long, long time.

That is all so interesting, Maryz. See, who said that you would have nothing relevant to offer?

DD2 is interesting. She, on lots of levels, behaves as if she thinks that we all think what she thinks. However, when I asked her once what her teacher would think of something, she said quite indignantly: "I don't know! Her brain isn't my brain you know!"

She couldn't imagine what someone else might think about something, but to her that was entirely logical, because she didn't share her brain!

It must be fascinating hearing the reasons for behaviours which must have driven you up the wall and caused much heartache at the time.

I found observing DS and working out what the triggers were a completely fascinating activity, and it took away a lot of the sense of helplessness and bewilderment for me. Less reacting to symptoms and more analysis of why things happened, so that we could work with and around his areas of difficulty.

Maryz, re the sorry thing, that sounds just like my son!

Either nothing to say sorry for in his eyes, or he meant it anyway!

I had to acknowledge his point but explain that its one of the 'rules' of polite society that regardless of your intentions, if what you did/said meant someone was upset/hurt, then you apologise. he kind of accepts that, as he is a bit of a stickler for rules.

The other stuff you've said is very interesting, Im a firm believer of there always being a reason for behaviors, I 'get' a lot of them, I think that if Id been at school now then I would have probably been diagnosed with ASD myself, so I understand the way he sees things, but its still hard because I have to help him do the 'right thing' to get by.

I think if you did a thread about behaviors etc, it would be very helpful to parents of younger children.

Oh yeah, Ive done that AQ test twice, I got 42 and 45.

I remember having to teach my v hf autistic DSD that a question like "can you see if the newspaper is in the living room?" was really a way of asking her to bring it back to me (rather than just shouting to confirm to me "yes, it's in there"). Odd how we just assume everyone gets the sub-text

What do you do if you knock someone over in the playground? You stop. You say "Are you ok". You don't run on until they get up

Yes that has been an issue for us too, he would also laugh if someone fell over which obviously wasn't nice for the person concerned, he would say that people falling over is funny, I had to explain that you need to make sure the person is ok first! things like that are only funny if no one is hurt and everyone sees the funny side [or if its on 'you've been framed']

It is still an issue though, his first reaction is to laugh, but god forbid anyone else laughing if its him that falls over!

Ive had that in my basket on Amazon for a while, must get it soon.

I saw the young man who wrote it on a programme about autism, he was lovely, as was his Mum.

I have been hiding from this thread as have been having a bit of stinky time in rl, but just came back and read a few posts back.

Maryz, my ds1 is just like that with the tv remote! Not only does he walk into a room mid-programme and turn over, but he also pre-organises and dictates what my other dcs can watch at the weekend.

Some of it is routine-led, as in he always watches Pokemon, the Clone Wars and a selection of other programmes on a Saturday morning before we get up.

He also genuinely believes he is helping his brother. When ds2 came home from school yesterday and wanted to watch tv (they don't usually bother during the week) then couldn't find anything on - so put on some catch-up tv, ds1 became all agitated saying first telling him to stop then ranting "Why can't ds2 forward plan, can't he tell what he's doing?". It turned out that ds2 had put on a programme that they normally watch together on Saturday morning and he was worried that ds2 either would be upset on Saturday morning when he had nothing to watch or would be bored having to watch it again. (Yes they had to watch it again, because that's what ds1 does on a Saturday morning!)

Quite funny really, seeing as the only thing ds1 is capable of forward planning is his tv viewing for Saturday mornings.

He is also 'Lord of the Volume Button' and repeatedly turns the tv up as he's watching. I try to be patient with that one, because I know he struggles to isolate sounds when there is a lot of noise in a room, but honestly, if someone so much as moves in their seat, his finger is on the trigger and after half an hour of watching tv the volume is positively deafening.

He currently has the loudest cough tic I have ever heard in my life - he can cough at mega-decibels all the way through the programme, but if I turn the page over on my book - up goes the volume.

Poor old ds2 is only just learning how to use the remotes and navigate the cable channels at the grand old age of 8 (well nearly 9 really) thanks to ds1 always being the one in control.

My DSD uses subtitles on telly a lot

I've tried subtitles, but he has a thing about being able to see the whole screen and doesn't like the fact they cover up the bottom portion.

It is not for me to say, as I don't know all the facts, but I think if he is having all his own way on the tv (volume and programme choice) maybe he is going to have to compromise on the subtitles? But a v loud telly gives me a migraine, so this may be more my issue than yours