ds (Aspergers, almost 6) behaviour deteriorating and feel at wits end and very worried about school in Sept!

[aloha]

Hi, have found ds very trying on holiday (short break in France) and generally of late. He has become much more compulsive, obsessive, argumentative, emotional and generally unreasonable.
Examples: Go into shop with dd and ds to buy some clothes for dd. Nice independent shop, empty, most stuff indestructible, pleasant owner. Ds obsessively rearranging stuff, then on the floor, having found the metal flaps that hide the electrical sockets, starts repeatedly flipping them open and closed. Woman behind counter looks nervous, but I can't stop him. If I drag him off one, he goes straight to the next. And SCREAMS and sobs if I try to stop him, which I do find mortifying.
At the supermarket, which he used to enjoy and was fine at, he now throws everything into my trolley. On holiday he became obsessed with fiddling with a grandfather clock in the hall and hiding small items in boxes. Also screamed if I tried to prevent him. I spent too much time physically dragging him away from places while he screamed. I just couldn't take my eyes off him. It was very wearing.
He also contradicts everything I say and repeatedly asks questions without waiting for an answer (ie will repeat six times until I scream at him).
He is far, far less distractible, cooperative and amenable than he used to be. He is much worse when even vaguely hungry or thirsty, though will never admit to hunger or thirst.
It is driving us mad tbh, and I think it's making dh quite depressed. We both hate yelling at him, but are finding it very hard to make him take any notice of us otherwise.
Normal sanctions (threats of consequences etc) don't work. And he seems really controlled by his obsessions with fidding and grabbing rather than able to control them. Have got an appointment with his paed in Sept, but am absolutely dreading his going back to school. Help!

oh aloha, how exhausting!

if it's any comfort at all, my girls' behaviour has deteriorated over the summer, I think it's the lack of structure and tbh being with me 24/7

hoping someone else will be along soon with more constructive advice from their experiences. good luck with paed, xx

I always find that ds gets worse over the holidays. i think its partly down the the lack of structure which he struggles with. Its horrible when it gets this bad and I really feel for you. Threats of consequences often don't work with him either. He knows that we will follow through and he's always gutted when it happens but he cant seem to stop himself.

The end of term in July was such a disaster for us though. We ended up taking him out early as they couldn't cope at all and we were being asked to take him home most days.
My mum has them today and they are at the theatre. Fortunately he should be OK with that, which seems odd, I know. I have never been so happy to get back to cbeebies! My lifesaver!

I found this book really helpful

I cant remember whether he has a statement or not aloha. If not has he been assessed?

I remember your end of term out-of-the-blue call, it was handled v badly. In spite of the way they were (mis) handling him at school, the structure of the day probably did "help" him a bit iykwim. have they said anything about the new term?

It's out of stock! Wah!

Agree that the lack of structure can be a huge thing. We've had quite a summer of it with dd1 ( ASD - we had issues with her nursery shortly after you had issues with your ds' school...), and I am simultaneously looking forward to her re-starting pre-school and dreading it as the settling in period will also be difficult for her.

Your ds had a difficult end to his school year - is it possible that his behaviour now is tied up with that? That he is himself dreading going back (apologies for stating the obvious). Dd1's behaviour deteriorates so much when there is something she is stewing over, especially all compu,sive behaviours.

I hope things improve soon, it can be so wearing.

I got mine from waterstones - they ordered for me.

Just had our application for assessment for a statement turned down.
School told the panel (or whatever) that he was top priority for ed psych and that they were putting all sorts of measures in place, yet told us they hadn't even got a classroom assistant in place for him with one week to go until end of term and has intitially refused all our requests - ie home school book, social stories in classroom etc.
So we have been turned down on teh grounds that it will take time for new measures to take effect - which means appealling will be v difficult as they can use the same excuse again.
Feel the school has deliberately sabotaged our attempt to get ds a statement and don't know why.
At school he was totally out of control. Literally running out of the classroom, kicking and screaming.
I find him uncontrollable in the sense that I can't make him stop doing things unless I got totally ballistic (even small things like loudly banging a fork on the table in a cafe) but at school his behaviour was more extreme.
Dh said he wished ds had been a girl the other day, as then he probably wouldn't have Aspergers
Dd is two and naughty, but not infuriating and impossible like ds. He hasn't always been this bad by any means.

Just done a search and I see that they've said no Sounds to me like he really needs one.

oh aloha, that's ridiculous

We had this at ds first school and i am convinced it is becuase they didnt want him there. He was only 4 at the time and the head was clearlt building a case for permanent exclusion before we could get a statement in place Your ds behaviour sounds so like my ds when he first started school - he was definitiely worse there than at home becuase the "strategies" they put in place made things worse but they wouldn't listen to any suggestions from us. They wouldn't even listen to my Mum who is an experienced SENCO herself. Can you move him to a new school?

a boy with ADHD (improving, on medication) had similar treatment at our school, I think the school couldn't be bothered with his complex needs and made life intolerable for him/his mum

From speaking to other local parent I have found that ds old school has done this sort of thing before. They make it so the parents feel they have no choice but to move their child. I think that if i hadn't been clued up they wouldn't even have officially excluded ds but would have made it seem like they were doing me a favour by keeping it off the records. They were only interested in keeping their records looking good

am thinking of different school, though obviously haven't been able to do anything over the holidays. There is a school not too far away (though out of catchment) that has a better rep for ASD (though didn't know this at the time of finding a primary, obviously), but is oversubscribed generally. Plan to see the head there when term starts, but am not v optimistic he will get a place there. The other very local school is quite sought after generally but is known for being 'stricter' and v hot on behaviour so, I suspect, not very SN friendly. When I went round there was someone on the 'thinking chair' in every classroom and I just thought 'that would be my ds'.
We have been so cross with ds recently and I find it upsetting, and so does dh. He just won't LISTEN! The screaming and sobbing is alwo extremely wearing. Last night he went doolally because dd's pyjamas were too big for her
He cannot differentiate between small oddities and big problems and reacts in the same way to all of them.
Leaving the place we were staying, I told the owner that if she couldn't find some of her small knick-knacks, she should look in a certain box, as ds insisted on putting them there (and would scream if I tried to stop him). I said to her 'Sorry we couldn't find something yesterday, but when I woke ds this morning and asked about it, he said he had put it in the gold box' and ds went MAD screaming that he hadn't said 'gold' (which he had) and even when I said 'Ok, you didn't) still had to be literally dragged away screaming and crying. It's so embarrassing and tiring.
Sorry for marathon posts!

Its such hard work sometimes isn't it

wrt pyjamas, is there any "coping" mechanism you could help him to learn, to redirect his feelings about "wrong" things - eg write down cross on chart every time there's something "wrong" - at end of day - talk them through (and talk about all the things that went well & he liked) and get a reward? (sorry have no sn experience, just prodding around in my woolly brain for something that might help )

Yes, the school is constantly on our back re taking him home, yet point blank refused to let me try to help by coming into the school to see his behaviour.
Just at the end of term, I was being told that they expected to have to take him out of his year assembly (he was obsessed with fiddling with and shouting into the microphone) and I was distraught. Every other child in his year was doing an assembly and all the other children were watching and so were parents, and I couldn't bear the thought of the humiliation of seeing him dragged off. So I MARCHED into the school, talked to ds, made a social story and cue cards and insisted he be reminded of the story and given the cue cards for behaviour etc, and he did get through it (though they loaded him up with far too many fiddle toys so he fiddled instead of taking part ) but I had to really gatecrash to make them listen to me.
Aaargh!

aloha
I think the holiday thing is difficult and my AS son is far more obbssesive when he is stressed. I try really hard to look at his compulsive behaviour as him desperately trying to some structure to his world when he is feeling adrift. We went on holiday recently and while he coped really well he started repeating how long it was until he went home - counting down the days. So every morning it was " six days home to Guildford" then "five days...blah blah.
Every change - a new restraunt, a trip to a different bit of beach, was stressful so the repeating would begin.
It is hard but if it IS the lack of structure then the return to school routine may help.
We have tried going back to the same holiday venue which helps him hugely. When he came home he just spent days carrying all his favorite stuff around to comfort him . I have gone out as little as possible and made sure that trips out are explained in advance and there are no surprises.
Maybe - like my son - you need to increase how much you prepare him for unfamiliar trips and outings. My DS did quite well for a while but now we agree exactly where we are going and I check he understands before we go out.
When a child seem comprehending I think it is really hard to understand their illogical fears. I just assume now that DS will be thrown and plan accordingly - and then if he breezes it I can relax.
I don't know if any of that helps - but I do know exactly what you mean and you have my empathy !

He seems to be losing control of himself to the extent that sanctions don't work and he cannot get enough of a grip to consider rewards.

I can't believe we are doing this but have written to his paed to ask about medication.

I know this is hard but it may work out the best in the end if the school do fail ds and his behaviour continues to be unacceptable at school because this will increase his chances of getting a statement. I think if ds has started in the school he is in now he would have struggled but things would never have escalated to the point they did in his first school. As a result he wouldn't have a statement and I think it would have been years before his needs were picked up on if at all - he would probably just have been seen as difficult. The way things happened meant that hopwever awful it was ata the time (and it was by far the worst time of my life) things have worked out well. He has a statement and fulltime 1:1 in the classroom and is doing really well.

I know what you mean re: he's losing control, but could you start it with something small, where there's less risk of him losing it, just to establish it as some sort of comfort blanket?

don't beat yourself up re: meds, you only want what's best for him. you are not letting him down, just trying to make life as normal as possible for you and your family. it must be very, very hard.

OMG my typing is all over the place - you can tell I get emotional about this subject.

The problem is, the behaviour can be pretty appalling wherever we are - home, supermarket, shop, holiday, school. He was falling apart at school so the structure thing doesn't seem to hold there.
He can be wonderful - calm, cheerful, his sweet eccentric self, but atm we are constantly bracing ourselves for another outburst. And it's really unpredictable. He'll ask a question, eg 'Is Mars hotter or colder than Earth?' (actually he knows the answer to taht one, but you get the picture) and I'll say, casually 'colder', and he will start to shout and cry and say 'not it isn't'. Oh it's a hard life!