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!

Sorry don't have time to read thread as just finishing bf then have to go out but ds 2 has asd and has been a complete nightmare over holidays, I have been in tears some days when he has gone to sleep because I hate to see him so unhappy. He was really bad at the end of school but worked it out that had changed all normal routines and replaced with fun end of term stuff, and as this is his 1st summer hols he has coped really badly with losing his school routine too. Dp and i have decided that we will have to find a summer camp for him next holiays he just can't cope and tbh neither can I. I'll be thinking of you x

Do you have a support group near you?

he is SO unpredictable. ie the bit about my telling the owner of the place in France where we were staying that he'd described a gold box. I was smiling, telling it as a gentle anecdote as part of our goodbye, ds just standing there, when suddenly he is shrieking and sobbing! It's very hard to predict that sort of reaction.
And the fiddle, fiddle, fiddle drives me INSANE! "Ds, leave that. Put that down. Please stop banging that. Ds, no. Ds, I said put it down NOW." - He just ignores me. I take it, instant screaming and sobbing. I leave it, it gets broken. I just want to cry with frustration half the time.
Sorry - can you tell I've found it a bit stressful of late??

I can see I'm not alone!!

Sorry to hear you are having such an exhausting time.

Does your son have contact with any outreach teams - there are so many different ones with various local names (behaviour management, SENs team, Autism outreach etc) These teams as well as being able to offer practical stratergies to school are also provide useful information for statementing. They are part of the LEA so schools tend to be respectful of them.

As far as informal exclusions go they are illegal. Schools will try and say it is in the childs best interest not to put negative information on their records. It actually means schools can get away with not putting stratergies in place and takes away a parents right to appeal.

hope things go better than you are anticipating

Ds would be a disaster in a summer camp.
No, I can't find an Aspergers support group near me.
There is one in a nearby borough but they told me I couldn't join. Bastards.

One thing I have found is that ds absolutely hates us talking about him - even if its about something nice. Thats why we have a home/school book because he just cant handle it and will fly off the handle.

oh, just remebered - a friend (also a teacher who has SN responsibilities at her school) with an older child (but not much - he's 8) got a rubbery nobbly toy from a conference on dyspraxia so he can use it at school - shall I ask her about it for you?

They said that? What a bunch of tossers! Well you've got us - I know thats not the same but if I hadn't found mn 3 years ago when i was going through what you are now I dont know how I'd have got through it.

tibni, the LEA autism support woman has seen him and offered NO useful advice. Nada. Zilch. Just sits there like a pudding. Actually NOBODY has offered us any advice at all. Even the paed just shrugs at us.

on holiday I was coming into the place we were staying and I was loaded up with heavy stuff and ushering in dd and ds and said, 'come on, upstairs' - dd just goes but ds marches straight over the sodding antique grandfather clock for a good fiddle, so I reach out and grab his hair and literally pull him with me. I felt TERRIBLE (ds didn't seem to mind - is a bit hyposenstive tbh) and sick at myself, but I felt absolutely driven to it.

Bundle, he has a fiddle toy (much chewed!). Actually the ONLY person who has been of ANY practical help is his lovely antipodean OT. I think she is a naturally practical person and has provided fiddle toys and a sensory programme for the school.
But even she finds him exhausting and uncooperative and that was one on one. He had two sessions of group OT (not with her, but two other OTs)and they asked me not to bring him again as not only was he so uncooperative it wasn't doing him any good, but they couldn't help anyone else while he was there.

You are most definatly not alone (still bf need to go out !!) I feel horrible keep repeating stop that, put it down, blah blah by the end of the day i sometimes just want to scream !! U can't begin to explian the frustration and exhustion to anyone else unless they are in it .Then there is the guilt because he takes up so much time and his siblings have to be so patient??? Argh

bloody hell aloha,no wonder you're knackered and feeling low, having been rejected left, right and centre. i really hope someone comes along with some proper helpfor you, x

IT just makes you feel so helpless and frustrated doesn't it. My DS will start this thing of repeating "nobody said stop" which is just an anxiety thing but he repeats it and needs you to comment back to him but if he does not get enough comfort he gets louder and louder.Then he pinches me and then cries becuaes he does not want to hurt me. The worst bit is when the two sibs are just trying to enjoy them selves and i can calm him but the more anxious I get the longer it takes. ho hum...
I guess I am lucky in that DS like holding certain objects which comfort him...although the 5 DVDs he held at the beach each day were something of a talking point amongst the bewildered french bathers

It sucks sometimes though , it really flippin sucks

I also feel so guilty for not being patient because it's not like he asked to be like this
Dusty have recently found mn changed my life

I worry that dh gets quite depressed and low about it. We seem to take in turns to get shrieky and mad.
Luckily dd still loves him to bits. I feel awful that I constantly tell him off and not her. It must seem so unfair.
I do feel so frustrated that nobody seems to be able to really help.
That's why those 'ASD diagnosis, what next?' posts make me laugh hollowly. The answer is usually, IME, 'nothing'. But posting 'don't get your hopes up, love' is a bit negative, eh?

Are you going to fight the LEA on their decision not to assess him?

Yes, plan to appeal, but know they will just say 'we said before the new strategies will take time to take effect' and reject it again, and I don't know what we'll do then.

Ask them to give you a timescale for how long it should take before you see an effect

That's a good idea. I also have to get a definite time and date for his appt with the ed psych and I also want to meet him/her beforehand (that'll be popular )

Oh god. Makes we want to go for a lie-down.

Also if they do keep refusing you can always try writing to your MP. I did this when i complained about ds old school (after i had removed him) and she wrote to me and to them asking to be kept informed of the results of the investigation etc.

Just some ideas that may or may not work. (sorry if you have already tried them) probably most suitable for school.

Does your son have a workstation / chill out Zone for when things get to much. This varies depending on childs need. My son has an in class work station as well as a seat on a class table and also a traffic light system. When stuff just gets too much for him he knows to get the green for go light and give it to the teacher. At this point he (and his TA) will leave the class and he will go for a run round the playground or a walk round school. (this has to be monitored carefully as ds will take liberties if allowed.)

Some schools will have a chair or beanbag in a quiet safe place with books or toys of interest.

Depending on the child some children have a sliding scale where they track their emotions 10 being im going to explode! My son wouldn't be able to do this.

Behaviour management teams can do really good work with children helping them (using games and fun stuff) explore emotions and friendship issues. If school express concern it maybe worth asking for referral to them.

Have school put in place a behaviour management plan?

Sorry about unorganised post - thinking as im typing and trying to keep an eye on kids LOL.

Have you had contact with CAHMS - they often run social skill workshops - might help!

I remember only too well - in fact it makes me feel stressed out now just thinking about how hard it all was Don't give up though Aloha. It wont make you popular with the LEA but who cares about that if you can get ds the help he needs.

Hi Tibni, there is talk of setting up a workstation when he starts Yr1. This may or may not happen. not sure atm.
Traffic light system sounds useful if he is not exploding too fast for it, iyswim.
No behaviuor management plan at all. I had never heard of them until I contacted IPSEA and the woman was aghast he didn't have one, even though he's supposed to be on school action plus.

I am SO stressed Dustystar. We are both drinking far too much for a start. And I grind my teeth!