Aspergers/ASD support thread

Snaggles

We have problems with bedtimes too - Ryan will stay awake for hours, chatting to himself, shouting, making silly noises, leaping in and out of bed....sometimes it really does drive me a bit mad, but then I remember I'm an insomniac too, and he probably gets that from me, so I can't really criticise!

We have the bedtime routine clearly written out and blue-tacked to the wall. It's a blessing and a curse, because he will follow it, and he often now IS in bed by 8pm (although never asleep before 10pm, and often much later), but if I deviate from the routine even slightly, you would think world war 3 had broken out.

Forgot to say that while I was talking to Ryan's teacher on Friday, he mentioned that he wasn't aware that CAMHS were going into school for a meeting on Monday......gahhhhhhh, what's going on??!!

I think I will just ring them on Monday and find out.

Savvy_Sue

Ah well, hugs to you all.

All I can say is what worked with DS1 - with the droning on and on I found the only thing really was to say "That's enough, I've heard what you're saying, and I don't need to hear it again." Or, as in the case when he spent several days saying he was leaving home, to say it wasn't acceptable, I'd had enough, NO-ONE else would have him! But he was younger than 19 then: I think I would try to leave the room if that didn't work. Or ask him to - these days I wouldn't want to be driven out of the lounge!

I do remember that he used to start talking about what he was going to do for his next birthday right after his brother's birthday - 7 months before his! So I just said we were not going to discuss it until after MY birthday, which is a month before his. Of course I used to start thinking earlier than that, but I just wasn't prepared to listen to his grandiose plans for 7 months!

One suggestion for Ellie, and please don't laugh! If you have a copy of Toddler Taming by Dr Christopher Green, can I suggest you re-read it? If you haven't got it, can you get it from the library? I do think he has some excellent ideas, and he mentions whining and whinging. If your daughter wants to know WHY you're reading it, would it get through to her that as she's insisting on behaving like a toddler in some ways, you're going to treat her like one? I don't really know enough about OCD to know if this would be helpful or not - if not, as ever, just ignore me! :rotfl: I know I am fortunate in that DS1 is a 'rules' kind of person: once he knows what the rules are, he tends to stick to them. As you can imagine, until I knew he needed to know what the rules were, life could be interesting.

As for 'friendly' interaction with other children, I fear that one answer is eternal vigilance, and reminding him again and again that the friendly ways of playing are X, Y and Z, and that tapping children on the head, biting them, scratching or poking their eyes and bashing their heads against a wall are unfriendly and hurt people, so we don't do them. If something less friendly happens and needs to be apologised for, I would probably say "He has Asperger Syndrome and doesn't always understand how to be friendly." And remove him / hold him / distract him - whatever you can. Of course not everyone will have heard of AS and some will think you are making excuses and it's all your fault, or even if they don't think that you'll think they're thinking that, but we can only educate the world one contact at a a time.

Mind you I do dislike small children running free around supermarkets: I saw two brothers tonight: one launched himself off the mechanical ride and lay flat on the floor across the main exit path from the tills, then his brother flung himself to the floor beside him, nearly tripping a chap on his way out with a box of beer in his arms. I'm sure their parent wasn't far off, but was busy packing, and I NEARLY said something to these boys about how dangerous it was to lie on the floor there where people were going to fall over them ...

BTW, should it be me who sees your child go off on one and I look across, I'm only thinking how glad I am I can leave mine at home these days! So, pretend it's me, and I'm thinking you're doing a difficult (impossible?) job to the best of your ability, and NOT wondering why you haven't got your child under control. There, but for the grace of God ...

PasturesNew

2.49 now. . . I've never ever slept well.

I can't remember ever having had one good night's sleep where I didn't wake
up.

My mother told me a number of years back that whenever we went on holiday they had to stay awake all the first night as I would always try to climb up the walls of the caravan to get out.

I can remember sleep walking a lot years ago too. Thankfully I've not done that for years.

However, having lived my entire life with sleep issues - I rarely sleep more than 2-3 hours without waking up/getting up - most nights' sleep is now 4-5 hours, I hadn't ever thought about it. But it appears that sleep issues might be part of the spectrum.

All these things, dozens and dozens and dozens of things I've always had a problem/issue with - and it seems they can be attributed to AS all this time.

Right now I am in hibernation mode. Days and nights are a rollercoaster of emotions and inner dialogue constantly churning over things. I was asked last night by somebody who I've chatted to for over 6 years (who also has a condition, but I forget what) if I actually wanted to be normal? I said absolutely, I totally did. For nearly everything that's not gone right in my life (friends, family, jobs, issues, relationships, misunderstandings, everything) I can now recognise the AS behaviour I was going through that was the catalyst. Yes I want to be normal. I want to have been normal all along. If I hadn't had AS then I'd have seen the world entirely differently and BEEN the success everybody's been telling me all my life I should be. I've spent my life with nobody understanding why I haven't been a soaring success as I am so intelligent and capable and keen, willing, hard working, accurate, perfect. And I've never known why.

It's no consolation to have a label.

I'd rather have had the life.

I am inside myself, I've always known that, like somebody looking out at life. But now I know that's not how everybody is it hurts. And I want to scream LET ME OUT!

But I know I can't.

Things will get better now I know. Now I am recognising more and more instances/triggers, life's more chilled. It's never been chilled before. My head's always been chaotic with all the constant thoughts, plans, detailed minute plans over everything. I even managed to clear my mind for about 20 seconds this morning. That was strange. Having no thoughts going on. No inner dialgoue. It was peaceful.

Sorry. Just had to type something

sarah1975uk

PasturesNew wrote: »

2.49 now. . . I've never ever slept well.

I can't remember ever having had one good night's sleep where I didn't wake
up.

My mother told me a number of years back that whenever we went on holiday they had to stay awake all the first night as I would always try to climb up the walls of the caravan to get out.

I can remember sleep walking a lot years ago too. Thankfully I've not done that for years.

However, having lived my entire life with sleep issues - I rarely sleep more than 2-3 hours without waking up/getting up - most nights' sleep is now 4-5 hours, I hadn't ever thought about it. But it appears that sleep issues might be part of the spectrum.

All these things, dozens and dozens and dozens of things I've always had a problem/issue with - and it seems they can be attributed to AS all this time.

Right now I am in hibernation mode. Days and nights are a rollercoaster of emotions and inner dialogue constantly churning over things. I was asked last night by somebody who I've chatted to for over 6 years (who also has a condition, but I forget what) if I actually wanted to be normal? I said absolutely, I totally did. For nearly everything that's not gone right in my life (friends, family, jobs, issues, relationships, misunderstandings, everything) I can now recognise the AS behaviour I was going through that was the catalyst. Yes I want to be normal. I want to have been normal all along. If I hadn't had AS then I'd have seen the world entirely differently and BEEN the success everybody's been telling me all my life I should be. I've spent my life with nobody understanding why I haven't been a soaring success as I am so intelligent and capable and keen, willing, hard working, accurate, perfect. And I've never known why.

It's no consolation to have a label.

I'd rather have had the life.

I am inside myself, I've always known that, like somebody looking out at life. But now I know that's not how everybody is it hurts. And I want to scream LET ME OUT!

But I know I can't.

Things will get better now I know. Now I am recognising more and more instances/triggers, life's more chilled. It's never been chilled before. My head's always been chaotic with all the constant thoughts, plans, detailed minute plans over everything. I even managed to clear my mind for about 20 seconds this morning. That was strange. Having no thoughts going on. No inner dialgoue. It was peaceful.

Sorry. Just had to type something

Awww big hugs to you; that was so moving xxx

PasturesNew

Glad you enjoyed it.

At least I'm not depressed.

Just reflective.

It can be hard to write down how it is as it can be perceived as the writings of somebody depressed, which I am not.

Strangely enough, often a lot of what I've said in my life has been perceived by people as "negative". I've always been very logical and presented things the way I see them, which is the culmination of experience, reading and opinion - yet people's reponses have often been that I should stop being negative.

Another thing I've found out with AS is that this is quite a common occurrence. Which is great. Now I won't feel bad when people say I shouldn't be negative and they seem to misunderstand that I am presenting a different viewpoint. I will just bite my lip and think "how normal of you to not see the other possibilities"

When everybody's giving their views and yours is pounced on as negative, that can be a very isolating experience. But now I can dismiss that feeling. So understanding and managing my behaviours will score one more point for that in future.

NoahsPennilessMummy

HI BM:D

my ds does the standing too close thing too....his eye contact has always been over intense rather than absent.
if he wants to be friends with children (or more often adults), he will put his face right up to theirs and flap his hands in their faces:rolleyes:
obviously they wonder what he is doing.

when he was first diagnosed he went to an autism centre 3 days a week for intense therapy and they used PECS symbols to try to help.
Initially they were used for him to communicate as he was non verbal but also larger symbols to give positive or negative messages to his behaviour.

it sometimes worked sometimes didn`t depending on his mood.

BTW he is still being Smudge the cat too:o .....trying to eat his food from a plate on the floor and crawling around meowing:rolleyes:

NoahsPennilessMummy

also have you been on NAS website? they have a lot of info on there regarding behaviour etc......also lots of good books re behaviour and some about siblings of children with AS and how to help them.....i look at the books for ideas on the titles then buy them cheaper on amazon marketplace.;)

samf1971

I had the specialist social worker come round on Friday, she went through lots of info with me and gave me a few leaflets about things going on specifically for special needs children in the area. We're really quite lucky I think as there seems to be lots to go to we're trying DS with soft play on Tuesday to see how he goes, it's only an hour and she said that at most there's about 6 or so children so a big come down from the 70+ that were at his mums/tots group (which apparently is no longer pc so they call it stay & play apparently lol)

There's a specific pre-nursery type stay & play for ASD children which sounds just right for DS & a few other special needs events plus she arranges trips to the donkeys where the children can ride on them which I was really taken with (hopefully DS will like the donkeys - if he does we said we'd adopt one & then hopefully when we eventually can afford a car we could go visit ourselves)

She also advised about buggies/pushchairs, DS is already too heavy for his and I've been trying to find something that takes a higher weight - looked at mountain buggy as they take up to 35kgs but they are sooooo expensive, he doesn't need to be in the buggy all the time as he can obviously walk but he's a liability near the road (we have to have him on reigns all the time as he will not hold hands) so it's much safer for him sometimes to go in his buggy - he also feels safe in it, when we went to the paed, the thing that calmed him down was sitting in his pushchair. We need an all terrain for the grass / beach etc otherwise the mac major would prob be ok.

Anyway hope everyone's having a nice weekend ((hugs)) all round xx

Ellie2758

MyUserNamesTaken wrote: »

12:10am and I've only just managed to get my lad into bed...and he's still talking at me. He's hyper right now and won't sleep. He'll be up again in about 5 hours, if i'm lucky...if not, it will be 4 hours....:|

It's a nightmare isnt it? They just dont seem to NEED the sleep. She was up at 3am the night before........................:eek: . My real worry is that she will turn day into night. THAT is something I just couldnt cope with.

shazrobo

blue_monkey wrote: »

Oh yes, thanks for the advice also about getting him to stay at arms length, I will start giving that a try too. I think he just likes being close to people but others do not see it this way - again, it is social skills that need addressing. he will also talk over other people that are talking, so if I was having a conversation with someone he would stand in the middle and speak louder about something different that he likes, I guess this is another AS thing, I think although we are going for ADHD I will mention these things as maybe there is something else as well as. this is why I initially thought Aspergers but I find myself doubting myself, I know I have a lot more of this to come

Hope everyone else is having a good weekend.

both of my sons ddo that bm, even now they are 12, they still talk so loudly and i find it impossible to have conversations with other adults in their presence.