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.

Ok, so... I have an issue at the moment with DD. She has CP and seems otherwise cognitively unaffected. She is a delightful 3.10yo in most ways.

However, she has a thing about timers that beep at the end. She's fine with the cooker and the microwave. We bought her a visual timer because she isn't a fan of finishing an activity without warning. I thought she'd like the whole 'green light means lots of time, yellow means nearly finished, red means time's about up.' However, she becomes nigh on hysterical when we turn it on. She won't actually do an activity because she is obsessively watching it. She seems terrified. She claims it is because it does a beep - although the volume is turned right down so it's barely audible.

We are making bread today - and it needs to sit and prove for 45 minutes so I've put the timer on. I have explained it is really helpful as it shows us how much time we've got and she seems to have accepted it. However, she is running through to the kitchen every 2 minutes and if I tell her to wait before going through she becomes very worried.

Any explanations? Anything I can do to help her through this? It seems completely irrational - although I do wonder whether she gets nervous and her muscles therefore tighten up which must be uncomfortable...

Maryz - DS1 doesn't "do" sorry either for pretty much the same reasons!

A very eminent ABA professional and 45-year veteran of working with autistic kids and adults explained this to me once:

One of the most important things to teach your autistic child is how to accept "no" and learn to compromise to others' wishes and agendas. The point being that, whether they end up living independently, with a partner or family, or in a residential home, living with other people involves not always getting your own way

Not easy , I know. Not easy with the NF kids either!

I stare at people's mouths when I'm holding a conversation, particularly if there are other people around. I need to do it do distinguish what they're saying from the background noise.

DS1 insists on subtitles and gets impatient with the live ones.

We had taken to living with subtitles permanently on cos of DS's noise stims, but 10 years in, I can very very cautiously say the noise stims are getting better (cross fingers, don't speak too soon)

If she can see the timer she gets hysterical and refuses to do anything. If she can't see the timer she gets worried and has to keep going to check it.

Yesterday I got her to stay on the mat for time out by threatening 'If you get off the mat I'll put the timer next to you.' It worked though

She did play the game for 20 minutes without checking the timer earlier and I thought we'd had a breakthrough. But then we were looking at the dough, the timer was still next to us on yellow and she got very scared and wanted it turned around. However, once on red she counted down the seconds from 40 until it beeped and then giggled...

kids, eh?!

I had a child who used to get stressed when we used timers in class for tests.
Not the work, which was well within his capabilities, but the timer.
I reversed it, so that in a 10 minute test it counted up not down, and that stopped his anxiety. It was the sense of running out of time that freaked him, found it hard counting backwards out loud in steps as well but he could do it on paper in silence.
I used sand timers for DS when he was younger, because he hated sudden noises, and now he's 18, he has a timer for cooking in the shape of a cat so that he doesn't forget and let things burn.

Maryz
'instead of expecting him to "know" what to do I used to teach him routines. It's probably now part of ABA, and social stories and all that - which no-one told me about at the time.'

I did this all the time as well, taught him the routine and the convention before understanding kicked in. Scripted responses for situations so that he didn't freeze and get angry.

Yes to it being the rest of the world that is wrong.
Ds has dyslexia as well and particularly struggles with spelling. His solution is to reform the English spelling system. (Although I do think he has a point there).

His current phrase for any human activity he doesn't understand - 'they're brainless oafs'.

Entering the conversation late,
and struggling to keep track of the different conversations
within this social occasion that is nothing like a library
(and I am enjoying but feel slightly anxious )

AQ=39

Did it before and was borderline, but I think I was lying had poor understanding of my own emotional states when forcing myself to do social stuff .

and Ouryve, lipreading is very handy. Almost all over-65s have some skill, hearing impaired or not.

Trouble is, the subtitles don't match the words exactly, which drives everyone in this house wild (well, not toddler ds2 yet, but I expect it's only a matter of time...)

I'm well ahead then, Mareeya (though I've just collected my varifocals after having a lens replaced because the reading addition wasn't strong enough

And the words not matching is why the live ones get turned off. He's learnt to accept that Challenge doesn't even have them. It's one of the things that DS1 Disapproves of and has struggled to accept. He thinks I should write to them to ask for subtitles.

He's also currently Disapproving of DS2 playing the last level of a game on his leapster over and over because he likes the bit where he gets to fly and likes the ending where the young dinosaur is reunited with his parents and they all have a hug, even more. DS1 is raking through his lego box and muttering away, Victor Meldrew style :o

I do agree sickof, but we expect so much of him in other ways and he really isn't allowed to rule the roost - much as he rails (sp?) against it.

The TV thing kind of snuck up on us, because dh and I rarely watch it ourselves and ds2 never complained, so it's only really since we've had our beautifully vociferous and strong-willed dd (who is now 4) that we've realised he does it and clamped down.

Now ds2 is given the controls and ds1 will try anything from surreptitious sidling up to where ds2 is sitting, to downright con-artistry to get them back off him "Shall I help you ds2, I know how to do that ... " etc.

On Friday afternoon, he was told categorically that he is not Lord of the Remote, much has he believes he is and that ds2 could watch whatever he wanted to - if ds1 didn't like it, he could go somewhere else until the programme was over. Cue hysterics about the kitchen not being far enough away to not hear the programme and him being terrified of going upstairs on his own. No dice - I told him he could watch it or leave the room, those were his choices - no arguments. He sat in the corner of the room, face like thunder, with his Nintendo Magazine over his face, thinking that I couldn't see him peeking round the other side! Then, bless ds2, they watched it again this morning.

Ds2 really does have the patience of a saint - ds1 has to push him a long way before he fights back. Dd has been good for all of us, especially ds1, as there were lots of things that we just let be, as it was easier than fighting him - but she simply won't take it, which reminds us that neither should we.

It's honestly quite embarrassing that it took a toddler to teach us how to parent ds1.

You sound like you have it all covered Moose, and DD is awesome! We had a similar stand-off today when DS was wanting the remote and syarted to tantrum. I said "you have to wait" and told everyone to ignore him and chat away as if there wasn't a screaming DS in middle of room. He is such a fundamentally happy little boy that eventually he realised the tantrum wasn't working, and moved on to something else!

Late to this havent read all the TV posts and popping out again but DS is volume potty. He wont do subtitles as cant read well. His is due to sensory annoyance? like me a ticking clock drives be bats.

one person merely tapping a keyboard and the volume goes up, door knock or phone ring and up it goes again. If DH has the radio on in the back room even we are all deafened with the volume.

Have not resorted to headphones for him :)

Hi, can I join in again too

I scored 39 and 41 on the AQ test but know I would never be diagnosed due to early childhood trauma.

I occasionally gate crash maryz support thread on the teenager board, my Dd1 is undiagnosed but I am pretty certain she has Aspergers and ADHD. Our relationship has almost totally disintergrated in the last 12 months and I am not really doing much to rescue it tbh.

She and Dd3 both struggle with sorry although Dd3 will occasionally say it if she knows she has done wrong. She absolutely will not, ever say sorry for something which she considers to have been an accident.

And as for tv buttons, I just dont even bother anymore(I just MN while she watches tv), luckily I have massive gaps between my Dd's so now Dd3 is pretty much an only.

It is things like controlling the tv that I have run out of steam with recently, I suppose I need to get back on top of it really, I know I am making a rod for my back with Dd3 and her control issues but it is exhausting to fight her everyday.

Oh and meant to say, I cant use timers or counting with Dd3, she goes completely hysterical if she thinks she is up against the clock.

interesting posts, ds has always loved the subtitles, even before he could read 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 ...