At a loss with ds1 (long - but desperate for advice/perspective)

[moosemama]

Sorry this is a massive post - I just need to get it all of my chest, as I'm tying myself up in knots. Huge thanks to anyone that managed to read it all.

I don't really know what I'm asking for here, I suppose I just need some perspective from people who aren't in the middle of what's going on here, as I can't seem to see the wood for the trees and neither can dh.

We are having some real problems with ds1. Its all so confused though and I'm not well so handling it all rather badly.

Since he's been on the omega supplements (a month now) he's been generally more centred, no mood swings - which is a big improvement on the terrible swings to the depths of despair and sudden reactive anger we were getting before. He has also seemed to 'get it' when he has it explained to him that his actions/words/behaviour has upset or hurt someone else and how they are feeling. We've had a handful of notable instances when, after having someone else's feelings explained to him he has been in real distress at having caused them to be so upset.

When he does get upset however, he is totally overcome by his emotions, as if they are too strong for him to cope with and he's unable to regulate them and get himself back on track.

My feeling is that he has been brought abruptly back to a more conscious state of being in 'our' world and its all a bit much for him to handle. Long term I see it as positive progress, but I do think its hard for him while he's going through it. We've talked lots and had plenty of cuddles and I've tried to be really positive and supportive through it all.

BUT - over the holidays we have struggled with him. He appears compliant when we ask him to do something like brush his teeth, or go to the toilet before bed, but then he bareface lies that he's done it - even to the extent of going and standing in the toilet room, not going, then flushing and coming out - even when he desperately needs to go (he will do this every time if we don't check and will not go to the toilet at all unless prompted).

Last night he did this, we didn't realise and he then went straight up to his bedroom - pulled down his pjs and weed on the floor! It then transpires that this is not the first time he's done it. This explains the horrible smell we have been trying to track down in the boys' bedroom for a couple of months now. The carpet is going to have to be ripped out and replaced - I had almost given up looking for the source and decided it must have been coming from the wall that is waiting to be replastered after a roof leak last winter.

Obviously dh was furious with him when he caught him in the act and asked him why he did it, when he'd just been in the toilet. He said he couldn't help it, it was an accident and he just didn't manage to hold his wee in. So dh asked why he had time to pull down his pjs if it was an accident and ds said he thought he'd be in trouble if he weed on his pjs ( but obviously not if he weed on the bl**dy carpet!). I went up to talk to him and ended up - much to my shame - completely losing it with him and shouting a lot. Mainly because he simply wouldn't accept that he'd done anything wrong and kept reiterating that in his view he couldn't win, because if he'd weed on his pjs I'd have been cross with him, but he took them off and I was cross anyway. He couldn't understand that by lying about going for a wee in the toilet before bed, then going straight upstairs and doing it on the floor - he had been disobedient, had lied and then had weed on the floor as a result. I'm not even sure I believe him that it was an accident - something doesn't sit right - its almost as if he did it in defiance - he obviously thought he wasn't going to get caught and has definitely done it before - more than once. Dh was the one that caught him and he said it didn't look like an accident to him.

In addition to that, I've also found out that he's been telling me he's reading upstairs on his bed, but actually playing on his DSi and quickly closing it when I go upstairs.

I've also caught him stealing sweets from the treat jar and yesterday he was caught out lying to me that his brother had punched him in the back when he hadn't. (In actual fact his brother had banged his head badly and ds just stood there and watched him curled up in a ball screaming in pain, so ds2 yelled for him to fetch me and he didn't move, so he shouted 'why aren't you doing anything - get Mum quick' and put his hand out to shove him towards the door'. When we discussed it, ds1 actually was perfectly aware that the shove wasn't a punch - he just wanted to get ds2 into trouble.

On top of all that, I've found out he's been threatening ds2 to keep secrets for him and not tell us what he's been up to.

There's more - I could go on for pages. All of it seems to be about getting one over on either me or dh, by doing something he shouldn't or not doing something he should and then lying about it. Its as if he wants the power of knowing he's managed to pull the wool over our eyes.

Fundamentally, if his lips are moving - he's 99% likely to be lying and I can't trust either his word or his behaviour.

I had a chat with mum this morning, as she is a clinical psychologist and told her I am so confused. I don't know what is AS related, what is 9 year old boy related, how the two are connected or how to handle it. We talked it through and she felt it was probably a dominance/power thing. That he might have got away with lying once, realised he could do it and liked the feeling.

The thing is, I am not in a good way myself at the moment. I am in full ME/CFS crisis, with really bad brain fog and am much less aware than usual. Because of this, he's managed to get away with little lies about things like, whether or not he's burshed his teeth properly, or washed his face, or changed his pants and socks (I found out too late that he'd been wearing the same socks day and night for 4 days, when I was ill and dh was looking after them) or one day he said he had got dressed when I asked him, but was still wearing the tshirt he slept in. I didn't notice at first because I was exhausted and barely managing to get through the day myself. I found out at lunch time when he was whispering about it to his brother and laughing at me.

There has been much whispering from him and ds2 has told me that he keeps whispering things and telling him not to tell. We have always had a big thing about not-lying in our family - I have real issues with lying and he has always known how I feel about it and that I won't tolerate it.

The thing is, I honestly don't know what to do about it. He has lost his DSi for today as a result of last night's weeing 'incident'. But then this afternoon he asked if he could have it, because he felt he'd earned it back. This despite me catching him out in two more lies this morning!

The thing is, he never used to be like this. He used to be the most well mannered, sweet little boy, everyone used to comment on how polite and well behaved he was and he never put a foot out of place. Now I feel like I can't even recognise the little boy I had up until he was in year 2 and between him starting juniors in September 2009 and now, he has become a totally different child. Yes he had issues before that, but we managed his behaviour and we were ok. Its almost like he's became more autistic at around 7/8 if that's possible?

Dh and I have been going back through his schoolwork for the statementing evidence and noticed that around June 2009 - so just when they starting transition to the Juniors/year 3 his work took a big nosedive, handwriting regressed badly and that's also when his teacher for the first time ever acknowledged there might be a problem that needed proper assessment.

Is it possible for children to regress this late? Do children with AS have regular regressions as well as developmental leaps? I just don't know anymore, I feel like I don't understand him and can't help him anymore. God knows I've tried everything I can think of to help him over the past two years, but nothing seems to work - he seems to be getting worse and developing new problems all the time.

I am worn out, ill and feel like I haven't the fight left in me to deal with this, especially as it seems to be all pervasive through every aspect of our homelife, but if I don't do something, I seriously fear for his future.

I don't know what else to say really. I'm sitting here in tears again and all I can think is HELP.

Gosh, defineme, your DS sounds a lot like my DS2 (11) who has HF ASD. Especially the getting cross when people are upset. DS3 was shaking his newly bought jellybean tube last week, at the zoo, and all the jellybeans fell on the ground. DS2 started really shouting at him, and he was in tears already! If they accidentally hurt themselves DS 2 gets really cross with them. We are trying to teach him to just say, "Oh dear, that's a shame" but even if we succeed it won't sound genuine, at least it'll be better than shouting at them!

He is also really joyful most of the time, leaping about and flapping fit to take off. He's an odd mix, fairly able academically, sort of class average, but really noticeably autistic. He doesn't have an AS DX as he was very late to talk/communicate and he's not a particularly anxious child.

Sorry, moose, bit of a hijack, but I rarely come across any other child who seems anything like my DS. He's odd but active as described by Lorna Wing. [bugrin]

Ellen, this is the good thing about MnSn, before I came here I had never spoken to people with dc's like ds2, yet here I can see great similarities.

We too have been teaching ds to say the right social things so that he has a bank of responses to draw upon.

" oh, are you okay?" and then stop and listen, is a great inclusive statement that socially fits well into aot of situations and hopefully will get him out of awkward situations. Followed by " can I do anything to help?" when he has listened, or " I can see what you mean".

There should be a little handbook of good bog standard responses for awkward situations!

Ds is more likey to try and do something practical to fix the situation, when pulling out a learnt verbal response would work just as well or even better.

We still get it socially wrong and we still go into a flappy panic, but he is learning. It's a bit odd as a parent to have to break these things down and teach him, as my 7 year old dd just does it quite naturally.

Ds is actually very intellectually gifted, yet that means nothing when his social communication skills are at the other end of the scale ( around the 3-5th percentile), because without sucess in those areas he is under achieving academically, more so considering his actual potential.

He is more than aware of this too, but at least is of an age that giving him bog standard things to say or do to access social support makes logical sense to him.

So I hopefully see a bit of light at the end of the tunnel.

defineme, I don't think you should worry - its not humanely possible to be working with them all the time. There's a lot to be said for sitting back and handling or managing the status quo sometimes. If you were constantly trying new things it would get exhausting both for you and for them, sometimes we all just need to 'be'.

Ellen hijack away. [bugrin] Lord knows I'm a terror for it myself. [bublush] Am really happy if this thread has helped you and defineme to connect with each other. [busmile]

Carrot, you should write that handbook - we'd all buy a copy.

I hadn't consciously realised it before, but ds also gets angry when others are hurt or upset. Not every time, as his other coping strategy seems to shut down and stare into space - hence the incident the other day when his brother had to shove him to go and get help. Its like he either doesn't know what to do and depending on the situation either reaches a stress point that triggers his off switch, or he gets stressed and panics because he can't understand what they are feeling and doesn't know what to do about it. When he gets cross about it, there's usually lots of shouting about the other person being stupid to get hurt in the first place or that they need to stop crying because he doesn't like it.

All quiet on the western front here today, ds has worked through his list and was up, toiletted, breakfasted, washed, showered and dressed in clean clothes and underwear by 9.30 - so not too bad a start, although there was a huge tantrum about going in the shower 'because it will make me all wet' [buconfused] ... 'er, yes ds that's kind of the whole point'. [bugrin]

Thank heavens dh was home to supervise though, because I've not been well at all this morning. Had another really funny turn, which dh decided to video on his mobile to show the GP - good idea in one way I suppose, but not so good when you are feeling vulnerable and in need of support.

Sorry your feeling so unwell moose :(

actually I think it's a good thing your dh filmed you.. Might shed more light on things for the GP

@ writing the handbook .. I am still learning everyday and stuff that works with ds won't work with other dc's. But I try and share ideas because any shred of light helps and shared knowledge is power, just when you feel so powerless and at a loss of what to even try next.
( which just adds to the stress of it all, just when you really don't need it!).

Thanks Carrot, they are much better responses than my 'oh dear, what a shame!' Might steal those ideas if I can get DS to actually give a damn! 'Oh, are you okay?' and waiting for an answer might be beyond him, but the words don't sound quite as sarcastic as 'what a shame' at least!

I'm completely addicted to MN (no, really?) A bit to the detriment of housework etc. My DH might divorce me, also. [busmile] I do have local friends with DC with SN but we only get together occasionally these days. All our DC are in different MS or SS, even now they are going to secondary there's none in my DSs school so it's harder to keep connected. MN is great for instant sympathy (or is it empathy?) and understanding to a rant.

Thanks for the permission to hijack, moose. They actually do sound quite similar, don't they? It's just my DS doesn't have the skill to be sneaky, it's all out there for everyone to see!

My bil used to photograph his strange allergic reactions to take to the docs. It's a good idea, but during an episode I think I'd prefer some tlc rather than a video camera in my face! [bushock] Were you feeling too crap to care?

Moosemama - off topic, but have you heard of tried Lightening Process www.lightningprocess.com/What-is-it/ for your ME?

My dad was daignosed with ME a few years ago he went from being very active - cycling 14 miles to work daily, to struggling/in pain doing the 5 minute walk to the local shop.

My dad is very cynical, hates spending money, but looked into the lightening process. Because of his cynicism the practitioner he saw wouldn't let him start the course until he agreed to do some additional reading and spoke to a number of previous clients that she put him in touch with. He swears blind by the process, which he had about 2 years ago, and has also met a number of other people who have benefited from it.

HTH
Minx

:) ellen.. I don't think he needs to actually give a damn ( snigger).. Just get by and sort of look like he does would be progress. And it would also give him the time to process what might be going on... A bit of breathing space in a situation that certainly makes my ds panic!

Amberlight has posted some great stuff about trying to work out what is going on and then trying to work out what she needs to do about it.
IMO it's time to process these things or have that verbal response that allows you the time to do so, or just look like you do give a damn, even if you don't.

How many times have you said " hi, how are you?" when actually you only expect the curtious (sp) response of " fine thanks, and you?".
Now if the person you asked actually started a long monolog of how they actually were, you would probably be stumped and back away from e er speaking to that person again. You were just being socially pleasant rather than asking fir information... And it's these things that keep our social lives ticking and leads to friendships and emotional support.. Which in turn allows us to achieve.

My ds would just hand out that info monolog and make people back off him and not ask the same social question back.

Hope that all made sense :)

It does, Carrot, thanks. I don't know why I'm amazed at how much there still is to teach my DS. New problems crop up all the time, it's never finished, is it? [busmile]

:) no it's not. But that's the thing with social communication issues, stuff we just know has to be taught in little chunks and that's a whole load ofstuff to teach!

( and recognise that you have to teach it lol)

I can't really add any more to this, or do better than the advice of thecarrotcake. Op, your son sounds very much like mine at that age, I found 8-10 the most bewildering years. He's HF AS and things have got steadily much better over the years, but I agree. It is never-ending and there is always a surprise around the corner.
TCC< you are doing a fantastic job of explaining all the steps and details needed.

Goblin, thank you, it means a heck of a lot from you, someone who has done a fantasic job with your ds and someone who is much further down the line than we are.

That's another good thing about MN, people like Goblin and Carrot who have been there, and done it, and come out the other side, or will come out the other side.

I've just posted a mahoosive post on starlight's parent support group thread if you fancy reading another rant, ladies.

I'm currently shoving DS through his GCSEs. He's trying to use getting cross, grumbling, not having the right equipment and everything being wrong to distract him and me from focusing on revision. A thousand and one obstacles to Getting Stuff Done
He wants me to lose my temper, so he can lose his temper and then in the ensuing cataclysm and fallout the work will be forgotten.
But I have seen through his cunning plan and am remaining reasonable and firm.
I've got to keep this up for two bloody months. There will be a lot of secret gin drinking and chocolate consumption on my part.

Oh goblin, I was going to ask how the revision was going:)

ds1 is being hard work... There is much being horizontal and procratination going on.. I am using bribary.. I am not liking this Gcse thing!
( I am also on a drop of Londons and green and blacks!)

oh moose I am so sorry you are having such a hard time. I too have ME/CFS (for the last 15 years) so I can really empathise about how exhausted you are

I dont have a lot of advice- such great advice given here anyway! - but I was wondering re: weeing...could you put a ping pong ball in the loo and make it a "game" for him....can he hit the ball/chase it round the bowl?? sorry, that makes it sound idiotic, but you know what I mean!

Is school the issue? I know ds1 was miserable at school and it took me a while to equate the hatred of that school with ds1's behavioural regression (not eating, not sleeping, very clingy, weeing the bed etc)

I am starting the omega 3 supplements tomorrow! hope they can assist his concentration levels.

xx

We are combining revision periods with bursts of cooking, half day trips to something historical or walk-based. He also has a couple of physical activities that take a half day. He's never handled heat well, so he and I are working from around 8-11pmish.
He lives in the moment, sees no consequences to failure and does not fret or feel worried. He cannot imagine failure, or what will happen if he bombs his exams.
I have told him many times that I will not keep him forever, but he really doesn't get it. It's a bugger sometimes.

Glad your just about managing to get through it.

Ds1 ( NT as far as NT goes in this house lol), also hadn't grasped the fact thathe 'could' fail and not be able to do the things he wants to ( want to go into either medicine or prosthetics), he is just assuming that it will fall in his lap, which is drivng me bonkers!

Minx, no I hadn't heard of that programme. I will have a read when I can get my brain in gear.

Beca, have you been on our ME support threadhere? There's a good mix of people with and without dx and people who have some really good insight and knowledge. Sometimes its just helpful to go and have a whinge about how bad we are feeling with people who understand what it really feels like.

Carrot, at the time I was too ill to care that dh was filming me, but when I started coming out of it I was a bit

I actually managed to take the dcs and their cousin up to the local park this afternoon and then to the shop for ice-lollies all round. Am completely wiped now though. We didn't get to stop long at the park, but they had a good time while we were there and it was nice to get out. Its awful really, it takes about three minutes to walk there (the park is behind our house) yet I never seem to manage getting there with the dcs. It was never much of an issue because all the equipment was for toddlers, but its just had an upgrade and the boys have been desperate to get there ever since.

I have been watching all ds1's classmates going past our house up to the park over the holidays and feeling a little that he can't do the same.

I don't have very much that's useful to add but wanted to offer some reassurance that I've witnessed a few seemingly age-related regressions in children with ASD (I'm a KS2 teacher). Some of it definitely seems to be down to the gap between children with ASD and NT children widening on the social side of things and the fact that it coincides with a time when children's friendships undergo some tricky negotiations and developments.

Aside from your DS being checked out for an infection (easier said than done on a bank holiday!) would something like these wee balls work? Coupled with the self-care charts you've done they might help break down the 'weeing in the loo' process to a step by step thing with a very visual reminder;

1. go into the toilet room,
2. take down pants/trousers/any other clothes covering bottom,
3. lift up the loo seat,
4. aim wee onto the wee ball (in the toilet)

etc. etc.