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!

They turned you down for a statement?

Sorry you and dh are having such a rough time. The summer holidays are too long IMHO. Even my usually placid and rule-bound ds1 went into meltdown yesterday.

Ds2 goes into what we call "contrary mode" when he is tired and/or stressed too. If you say something he will argue that the opposite is true. When you eventually agree with him for the sake of some peace he will then start shouting that what you said in the first place was true instead. It drives me insane. I haven't found any solution to it yet though, other than to just leave him to argue with himself.

aloha I don't know if you remember my friend who posted with frighteningly similar tales at the end of last school year? Well she finally got the ed psych, who recommended full time one-to-one, and the school are finally seeming to be more co-operative. But she has had to really really push them every step of the way. She was getting so desperate that she had contacted a lawyer who specialises in educational cases, who is also a mother of a child with SEN. She didn't have to use her in the end, but I've e-mailed you with my friends e-mail in case you want to contact her for the details, or just for a chat with someone who has kind of got somewhere.

Ct ds does that too - drives me nuts

I wish I could be confident that school will be ok! Am really looking forward to gettign back into routine though. Dd is starting morning nursery two days a week and is so keen to go. Plan to up to to 3/4 if she likes it.
The pointless arguing and contradicting will send me to teh funny farm, it honestly will.
Thanks Prufrock, will reply when i get your mail.

The anxiety level does lead to more quirkiness and ASD type behaviour and he has had the anxiety of a holiday and the anxiety of school. the constant questioning is to ensure the answer is the same. It drove me absolutely batty. However, I have to say it has improved although he STILL will say at early afternoon 'what shall we do tomorrow'

I also (and still occasionally do with my chap) have yelled and screamed, pushed and pulled because sometimes that seems to be the only way to get them to do something. Sometimes they only seem to 'get it' if they can see that you are at the end of your tether.

Does he do anything that might calm him. Mine liked(s) timers - those ones with blobby liquid in them that falls through holes and wheels and they used those when in infants a lot. He also loves swinging and this holiday is the first ever hol we have had when we didn't HAVE to go and find a swing - guess he's beginning to grow up.

I've just told him to stop squeeking - its driving me potty - very squeeky today (goes back to school next Wed - that's why).

I do remember that 6 and a half was particularly revolting and my NT son, who has just had his seventh birthday has been VILE this week - I think they have a testosterone burst round about this age. Also my chap (the ASD one) is always worse when he is growing and/or tired.

The school sound like shits. Linden Bridge in S. London do outreach service to schools within a reasonable distance - if that helps - they were really good with suggestions. There are things your school can do - frankley I can't see why they won't given that they have got a really disruptive child. If they exclude him it may be good for you because the LEA will have to listen more and may well place him the school that you are out of catchment.

Many many hugs sent to you. Sorry i've drivled on.

Aloha

You need to contact IPSEA and get them on board again. Undoubtedly they will advise you to appeal the LEA's decision. I would appeal the LEA's decision as a matter of course and longer term preparing to go to Tribunal (IPSEA can again help in this regard).

The school that your DS currently attends clearly does not want him there thus they are acting the way they are. I would think as well they are angling for permanent exclusion for your DS.

BTW School Action plus is not worth the paper its written on in my view. Its completely useless for a child with AS.

Hi, haven't read all the posts properly but have you tried a 'Wait Bag'. I see you mention fiddle toys. I was told to make up a bag with several things for my ds to keep him occupied. things like waiting in a cafe for a drink can seem like an eternity to him. I never really got round to doing it properly because with 3 kids I seem to have too much stuff as it is and his dd would just want one as well.

One thing he did like for ages was BluTack which is good because it doesn't dry out. However he would steal it if we were out in the library or a cafe, surreptitiously picking away and I always had visions of us leaving and the door slamming and all the posters falling off the wall! Anyway its good for keeping hands occupied and quite portable. What about drawing, a small sketcher maybe? You can get these squidgy balls that light up as well. All these things put in a bag may help when out in shops or anywhere where he may fiddle with things you don't want him to.

Regarding the getting things out of proportion, sounds very much like my ds at that age. It was exhausting trying to forsee what may or may not happen. Hard when dd is 2.9 years younger and constantly says things 'wrong'. However it seems to have slowly got better. He turned 8 last month and I'd say round about 7 he started to become more aware and be able to listen to me. He rarely has massive tantrums but gets angry in a different way now.

I'd guess that your son will gradually grow out of this so don't feel totally stuck in limbo just now and get all the support/help you can of course.

Am also considering changing schools for my ds too so am in the same boat. Sorry rather long and rambly...

Another post to say it is the lack of structure I think aloha, and going on holiday rather compounds that.

DS2 tries to keep it together but always has meltdowns on holiday, even though we've made his 'safe place' on arrival.

DS2 has been hardwork this holiday too. He just keeps going off about things like that conversation about Mars, and rants and raves is a like some terrible verbal download. I used to engage with it, now I just stand back. Though it is really really difficult around other people because they expect you to do something. He screamed and tantrummed for about an hour a few weeks ago because he said his grandfather's shoes were squeaky. Both grandparents open-mouthed with horror.

Bundle - oooh, I need a rubbery knobbly thing please! Can you look into it for me? We have tried various things, but he complains strongly about the texture of many, many things. . .

Is there any chance that he's fretting about going back to school?

Sorry things are so hard aloha. I found that going away on holiday made dd2 worse until we established some kind of routine for her-she was just so miserable I felt guilty for taking her. She has a lot of the traits you describe in your ds but not so severely and I get worn out and tearful with her so I think you are doing fantastically to be hanging on to your sanity at all. Sorry I can't give practical advice but we havn't even got past the first hurdle, having waited three months for a referral and still no sign of an appointment .

I agree it gets worse over the summer, was much embarassed when a neighbour (who doesn't know the boys dx because she's one of the few normal people round here I can chat to, and its nice to have a convo that doesnt include ASD sometimes) commented how much easier it will be when ds3 starts school at Easter.... clearly concerned about the noises coming from our house (I love or house but never again will I choose one not double glazed and that fronts onto a road LOL). AS Easter is when baby comes, I was very

You'll probably remember all teh saga's we ahd with school prior to ds1 getting his statement- lying that they had registered him on the Sn register with the LEA, lying that they ahd applied and been turned down- some schools seem very reluctant to work with Sn kids (or is it the LEA frameworks)? , in our case I think it ws inexperience- ds1 was only one of the first children to get a statement there (one was done for another child simultaneously, one child came with one but for physical needs only iyswim- mild CP, no LD). The good news is that they applied for 5 this year so something has changed!

Anyway. Iw ouldn't panic just yet. One thing i've l;earned with my Sam is not to try andrpedict too much what he'll cope with and not, andd certainly transitions cause a delayed response in him- as if he needs to establish safety before he can let loose, iyswim?

Sadly though it sounds like this school is going to need a humungous meltdown for changes to be amde- seriusly unfair. So I woudl consider the moving school. we did almost move Sam, only reason we didn't was that DS2 was very settled and he'd have to swap as well (basic logistics) and we figured that just for once, he couldtake priority. Hard decision though.

Hi Aloha,

I'm sorry things have been so tough , really sorry. I hope it didn't utterly ruin the holiday.

We still get this with DS1 a bit - blow-ups with no apparent reason and no warning, often about something that I've said (well, according to hhim, anyway) - very like the gold box incident. E.g. the first time we went to the autism-friendly play session at Sommerford Grove he got incredibly upset because he claimed I'd told him we were looking for two playground, not just one and he wouldn't have it that I'd never said anything of the kind!

I think Eidsvold's suggestions are really good - DS1 has independently found various fiddle toys such as plasticine, Blu-tak and modelling clay, pieces of string, little stones etc (I cleaned out the washing machine the other day and found half of Hythe shore in the door bit ).

We also try very hard to minimise waits (that's why I was such a bag of nerves when I met you that Sunday!) and never to do anything which is unscheduled and spontaneous.

If it's any consolation, though, DS1 has got so much better about things in general and difficult behaviour is now very much the exception rather than the rule. I'm sure it will be the same with your DS.

Another thought - DH is going on the NAS Earlybird course soon and there is also a shorter NAS course which they run several times a year on Saturdays called "Help!". Good for suggestions on how to manage difficult behaviour, and lots of books to borrow too.

My ds1 always finds adjusting to holidays difficult. Firstly being off school, then being on holiday, then back home, now I'm also worrying about him starting school on Monday. I really sympathise - and the school sounds shit IMO. We had to move ds1 when he was in nursery, it was a really traumatic time. but the school he is in now are excellent, thank goodness - we are really lucky.

Just re-read my post and it sounds really negative - sorry Aloha.

Hi Aloha.

I'm sure I'm just saying what you already know, but it is hugely important to get the school to start the paper trail ASAP with regards to applying for statutory assessment. I'm not a parent of a child with SN, but have worked as a Learning Support teacher in secondary schools, so have seen the statementing process through from that side. And I know we are not the most popular people on this board, but some of us really do try our very best .

Push for an Ed Psych meeting as soon as term starts. If they are like us, the school will have a limited number of hours, and the LEA won't have enough Ed Psychs to go round. IEPs with very clear targets based on the advice given in that meeting, and regular meetings with the school to see if they are being met. The fact that he has had to be collected from school must be documented by the school and put in his file.

It is ridiculous that the school seem to be obstructive, and would explain why we had children coming to us in year 7 who had to have a statement rushed through when it was blindingly obvious that they needed one.

Although the number of hours support is often pitifully inadequate and the advice from the Ed Psychs not much better...

Whenever I read about children with special learning needs I want to mention this:

sunflowertrust.com

Its a much more holistic series of remedies which in my limited experience do make a difference. Certainly my son had issues and I really believe that this has hugely helped him and is continuing to do so. They are a charity so and give out funding.

hi aloha - sorry to hear of your shitty holidays and school. i'mfinding the book

ASPERGER SYNDROME AND YOUNG CHILDREN Building Skills for the Real World For people who know and care for three-to-seven-year-olds Teresa Bolick PH.D. ISBN1-59233-062-2

-very helpful because the other books so often seem to be about teenagers with AS.
It also compliments the RDI stuff we do with our ds1 - RDI isn't for everyone and is a big financial drain, but it's given my dh and I hope there's info on RDI-connect.com

• i could honestly relate to all the things you said - yelled at my ds1 in the car today after 4hrs of a screaming boy impersonating a sat nav whilst kicking my seat - we're only doing familiar hols - same cottage in norfolk and we did a pre long hols weekend to it - where my motto was'let him get all the screams out now -then there'll be less in august - and there really were.I did the same with our visit to my mum's - had a really tiring weekend on my own with him there in july, but it laid the way for the 5 of us having a reasonable time there last week.i take photos of him everywhere so he's got positive memories to reduce his anxiety the next time we do it - he has his own albums. i found the other 3 weeks when we weren't away the hardest - i think he finds home the most stressful when there's no school and the only solution i've come up with is exhaust him - so he's having walks first or last thing with me or dh as well as what else we do.

hope it gets better with the school - i'm so impressed with what you did re his assembly, but sad that you had to.

i kept ringing my paed and saying we couldn't cope ( i think i gave the impression of coping too well at first) - i think i may have given the impression that the worst things/ days were happening every day - and in the end we were referred to a psychologist that we see every 2 months - she's been very helpful with the practiocal stuff - as in how can we spend more than 10 mins on the beach without anxiety related punchups and indiscriminate weeing? answer - buy a pop up tent for him to retreat to and go to a beach with a long walk up to it to tire him out first - it worked.

i've babbled- so good luck and i really believe you often have to get to crisis point before things get better ( or is that before people will help you )

omg aloha, i cant believe the school are being so difficult, sorry havent read all replies but have you tried to go over the schools head, its ridiculous he doesnt even have a statement when he is obviously struggling so much with school, i honestly didnt believe how lucky i was till i read some of the posts on here, both my ds's were statemented in time for school, guess lancashire isnt as bad as some peeps think. aloha, my ds3 is 6 in november, he was always quite an easy child in many ways, learning difficulties associated with nf1 and speech and language disorder apparently, but school agree that he is as, i have to say this summer has been a nightmare, he too is much more challenging, much more violent towards ds4, generally really hard work, i really do feel for you, i think he may have been harder towards the end of term as for the last few wks, the routine completely goes doesnt it, they are busy getting ready for sports day etc and the structure is suddenly no longer there, i know other peeps have struggled with this and my ds3 certainly did, heres hoping the new term is easier for him, and that you get the support both you and he need soon.

DS1 went very like this aged 6. Massivley compulsive.

I haven't read the replies- but I found that I couldn't stop the compulsions but I could limit them. Start using countdowns- so he has to stop after a coundown from 10. Get a Time Timer and start using that to set limits to compulsions. He's not able to control them so you have to.

What are you doing diet wise? Ds1's compulsions are worse when fogged up by gluten.

yeah gess, ds3 has been on gluten free and even school noticed a diff in his behaviour, have to say that has slipped over the hols so thats prob made matters worse, am waiting for appt for allergy tests, see if anything shows up, but it has definately made a difference with his behaviour.

don't expect allergy test to be revealing. Have you had an autism research unit urine test (not necessary- if its working they would say stick with it anyway).

Aloha, did he go back to school today, and if so how was it?

Thinking of you x