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Amber, Where Are You?

12 replies

TallulahToo · 20/05/2009 20:33

Not seen you around for quite a while now and just wondered if you are okay?

Please let us know how you are doing.

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Are your children’s vaccines up to date?
amberlight · 21/05/2009 07:57

After a bit of time off, I rejoined two threads yesterday. If asked to rate how I am on a scale of 1 to 10, I'd give it a 2, but that's better than it was. Funeral of two of my friends today, so . My autism team and friends have been so fantastic this last week in trying to get some of my confidence back, bless them. Have missed everyone very much.

TallulahToo · 21/05/2009 14:07

Amber, so glad to hear from you! Sorry you're having to go through so much just now and hoped to return the favour of a little bit of support away from RL if ever you need it.

Please see the SN board if you feel up to it...

How is RL at the moment? a 2 is very low! But I hope you are able to take comfort from having somebody there with you.

Not sure how good I am at expressing myself here but just wanted to send a hug.

OP posts:
sc13 · 21/05/2009 14:15

Hello Amber!!! Sorry about your friends.

Interested in this thread?

Then you might like threads about this subject:

amberlight · 21/05/2009 14:17

I haven't got the confidence for the SN board, I'm afraid. Just not sure that I have the skills right now for saying what I need to say to help anyone without making a right old mess of it. All my 'rules for what's ok' seem to be in chaos and I can't risk getting things wrong for people.
RL is a struggle...been too close to collapse and can't afford to. Very glad indeed to have people with me - every bit of support has helped so much, so thank you for your kind words. Trying to keep ds going through his GCSEs too, which isn't really going to plan that well. At least he seems fairly relaxed about the problems he's encountering.

TallulahToo · 21/05/2009 14:28

Oh poor DS bad time for GCSE's! Glad he's not letting it get to him. Don't worry about 'getting things wrong for people', I really am not that great at it myself! Stopped worrying about other people years ago & kind of figured that those that know and genuinely care will take me as I am. Just so long as I mean well and try to be a good person....

Don't worry about hurrying back to the board, it's there when you're ready and not going anywhere. You can e-mail me directly if you like - anytime. Just make sure you give yourself time and space to feel the grief. Blocking it will only risk it coming back later much more magnified than even this. (from experience).

Mail me anytime & take care.

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amberlight · 21/05/2009 14:42

So hard to explain why my brain can't do the "stopped worrying" thing. It just can't. I have to know the rules for what is ok to say and what isn't, and when there's a big group where some say things are fine and others say they aren't, it feels like one of those old shows where they fed two different instructions to a robot and its head starts to overheat from the stress of trying to work it out.

Scared sick of getting things wrong, always have been. Can be a useful trait if it means I get good at things, but it's also absolute hell to live with when I have a big crash. Really, really hope people will understand that I'm not trying to reject all the kindness and help and good things that they said about me - I'm just totally lacking in confidence in handling big boards and all the different dynamics and names on there right now. I really hope it will come back with time, because I do miss everyone on there.

amberlight · 21/05/2009 18:57

and I'm aware from what I've just been told that nearly 50 people said they wanted me to come back . Not a lot of use having a brain that can't handle stress, is it...

TallulahToo · 22/05/2009 12:24

Amber - In any language, think this means they want you back just as you are!

I was always glad of your posts which gave parents of ASD children an insight into how their world is. It's not something the children find easy to express themselves and I certainly felt you were almost speaking up for my own child.

Know exactly what you mean about conflicting views from two groups - was in that situation in RL the other day. Really couldn't win whichever way I turned & got quite bably flamed for it. But now figure that so long as I remembered my own views and stuck to that, then the rest didn't matter. Sometimes think that I should take the ASD tests as I am aware that I certainly would score points on it too!

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MsF · 22/05/2009 14:04

Hi Amber ( i am MUM23ASD...but am sticking to my original name)

and do you know who helped me 'get back my old self' ....YOU

I believe i AM on the spectrum...and ethe recent problems you had really hit me hard too!
I know we are not meant to great on empathy...but i felt your pain.

(I thought of you when i went for some lunch the other day...I was unable to hold a conversation cos the tiled floor pattern wasflashuing in and oout of my periferal vision...it felt like i was sinking and the floor was rising!)

amberlight · 23/05/2009 07:21

I'm eternally grateful for all my friends here. Truly blessed to know lovely people. And I really do count everyone on the SN board as a friend, for my part, though I'm sure some have despaired of me.

So hard to go through a real aspie catastrophic-thinking patch with almost no "spoons" (see the Christine Miserandino 'Spoon Theory' for an explanation of that - you can google it fairly easily). My brain switches back to to visual imagery and a visual way of encountering the world, and my ability to connect different social things together or handle conflicting ideas and situations is then very bad. I guess I've been through so many emergencies so fast that the panic-switch just ended up permanently switched on. Was just so scared and so sad, and not much good at saying that correctly either. And cross at a world that is forever so very difficult to encounter safely for so many of us. But there isn't a perfect answer to that.

It was great listening to Dean Beadle at a conference recently. He was talking about how he does an 'Aspie Egg Whisk' style of thinking, and it was such a good way to explain it: Take a little bit of egg white. Whisk it like mad, and you get a huge froth. That's what happens. When stressed, one probably smallish problem gets whisked by our brains into the End of The Entire World, then he said we need about ten repetitions of reassurance over time before it'll shut up. Yup. 'Normal' brains can apparently feel reassured by people saying something once. No idea how. How does that work? How do you get it to switch off the panic thing after only one repetition? That's an amazing skill.

Parents see these things all the time with their children, but I think they hope we grow out of it .

Had to cope with a hell of a day yesterday. It was not only the funeral day of my two old friends, but also the big disability conference, so I had more than 60 guests and many national and international speakers turning up to speak. Thank goodness for the brilliant team I have, and for the quiet space in the prayer room at the centre which me and Aspie colleagues were able to retreat to when we needed it. Brought along the z-bed and covers, and big squashy cushion to hug. I think the security guard and centre manager hadn't had a conference organiser like me before . They coped. So good, though - I think it might help make a big difference to the three counties, thanks to the excellence of the speakers. And it ran on time to within two minutes, which they hadn't seen done before. Phew.

TallulahToo · 24/05/2009 18:27

Amber, I am in awe of you at times! Can't think of anyone who could get through a day like that without melting down.

10 repetitions of reassurance? Well from me, here's one to the collection.... No matter how bad things have been or how bad they are right now, nobody deserves happiness more than you. If what goes around really does come around, then you have certainly earned yours...

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amberlight · 24/05/2009 19:08

Not just me, we had another Asperger lady with us who was speaking at it, and the pair of us were in a 'right old state' at times.

Nothing special about what I do, really. If I were amazing, I could do it all without the weeks and months of planning and the support team and the squashy cushion and the tablets and the prayers and the pleas to the nice security guard and the lady that runs the centre to help me from time to time. That would be amazing, and I know aspie speakers who can. Dean Beadle, for example.

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