Still waiting for autism assessment, still not coping, still looking for answers

[EnglishRose1320]

So I have been hiding away from mumsnet since last summer mainly because currently life is literally just a case of going from one tantrum to the next with the odd crisis in between. Don't get me wrong we do have good times mixed in but they are getting harder to maintain due to heightened aniexty.
So before I waffle on a quick summary, my eldest DS is 11 and waiting for his austism assessment. He is in the final year of primary and started it by getting excluded for the first time ever, has since refused to go outside at school and tries to run away so often that the school have put him on a final warning for breakfast club.
This year we have to manage sats, a new school and I have to have a minor op that has a six week recovery time and all of those things seem completely impossible to me atm.
The biggest day to day issue atm is the evening routine, the screams about homework, eating and teeth brushing. Any tips on making these things easier?
Sorry this is a bit of a vague post just feeling completely drained and hopeless atm, the older he gets the harder it is and the less confidence I have to deal with it all.

Aww big goodbyes can be overwhelming, I'm sure once he's there he'll have a great time.

He's back, clearly didn't wash at all whilst he was there but had an amazing time. Feel very proud of him! Absolutely exhausted now, he is totally physically and emotionally drained but worth it to see his smile as he told us about the things he achieved including zip wires, trapeze and canoeing! He even hurt his back on the last activity and coped with it despite the fact that it clearly hurt quite a lot, had a bit of a cry when he got home last night but managed to hold it together when it happened. So amazed at how far he has come.

What a brilliant update! Really happy for you all. And what a superstar your DS is .

Arghhh Half term, that is all!

oh dear. I hope the day has improved. DS1 is happy to be off school but my tolerance for his moaning over the forthcoming holiday is rapidly disappearing! Just &

How did your half term go? Ours got a little better for the middle of it. Slowly getting back into the routine of school. Did your all go back okay?

Glad half-term improved a bit for you. We're on holiday. Go home tomorrow. Ds1 has done loads tried loads of different food and been a delight. Dreading school on Monday!

Glad to hear your holiday went so well. It makes you feel really proud when they try new things doesn't it? DS had his first transition day last week and loved it. Currently trying to persuade everyone to get up and ready to travel to a christening, in a sods law type way ds1 is quite excited and happy about the idea, it's ds2 (usually totally laid back) and oh that are grumbling! I swear they have some kind of rota so that they are never all on board/happy with plans just to torment me.

Thanks, yeah it was really amazing to see him try and do so many things, especially as he really wasn't happy about the idea of going away. He did manage to go swimming with his pants under his swimming trunks! He had packed a pair to put on after, but I failed to break down the instructions quite as much as needed. He's been glued to his PC since we go home but I'm just letting him get on with it.

That's brilliant that DS enjoyed his transition day, I hope the rest of them go well too. LOL sounds like my house, there's always someone unhappy! I hope you made it to the Christening ok. and the grumblers enjoy themselves.

Christening went well. Having an awful evening tonight, mix of things, DS has come back from school with sunburnt cheeks, he is very sensitive to the sun and is always awful if he gets burnt or is out in it too long. On top of that the bloody cat has gone missing and a parcel arrived which had oh's outfit for a wedding we are going to child free so DS has freaked out about that all over again. Currently he is lying on the sitting room floor screaming and kicking, having trashed the sofa and coffee table. He has also gone into mumble mood (do either of yours mumble) then bangs his head of I can't work out what he is saying.

Sorry you had a bad evening I hope he calmed and got some sleep. Has the cat turned up? Ds1 is awful for mumbling, particularly when he is stressing out.

He calmed down around half 11 was asleep by 12. Still no sign of the cat, he is a little calmer this evening, we went for a long walk before bedtime, not sure how long until he actually falls asleep though.
Oh is away Fri-Sun so I really hope the cat is back before then.

How are things? Has the cat reappeared?
DS1 has been very up and down, apparently at school on Friday he was very quiet until breaktime then came in shouting he has a very big IQ, continually interrupted the lesson but got annoyed when anyone looked at him. I've tried talking to him about it, but I just get a load of nonsense about only behaving like that every other day apart from the weekends?!? Tomorrow is class photos for the Yr6 yearbook and he will not be happy. He desperately needs a haircut but is not so far in favour of having it done.

Thankfully the cat has reappeared! After three days in sauntered in looking his usual smug self.
Sorry to hear Ds1 has been up and down, it's a similar story here, I know the end of yr6 would be a challenge but I wasn't expecting it to be quite this exhausting. Luckily our yr6 photos were earlier in the year, ds1 normally refuses all photos but actually piped up with 'reception and year 6 are the ones you wanted weren't they, okay just one photo' so thankfully one huddle avoided.
Ds1 is mostly refusing to go to school and we have a battle each morning. Oh and I have decided that DS is getting so stressed out that any day oh is working from home we are not going to push school, we want him to be calm and ready for secondary not stressed out about end of year productions (he didn't get a part even though he really wanted one and auditioned for one) lunchtimes (one particular child and his sibling keep targeting ds) and the complete turmoil and lack of routine that seems to be year6 post Sats.
Got his final tac this week with transiston being the focus, was really looking forward to saying a final goodbye to the useless senco, having felt fairly confident that ds2 would be highly unlikely to need her. Turns out she is going back into a teaching role next year and lo and behold who should be teaching ds2 next year! I'm really hoping she doesn't judge ds2 based on ds1 because they are total opposites.
Hope your having a lovely sunny father's day, I best get on with the housework, the boys wanted to surprise daddy with a tidy house and a home made cake for when he gets home. I haven't yet broken it to them that he was our drinking until 7 this morning and won't be able to drive home until after their bedtime.

I'm glad the cat is home. Sorry your DS is also up and down. DS1's school has just announced sports day and it was a disaster last year so I was actually hoping they'd run out of time to organise it! I'd keep DS1 off like a shot, but DS2 would be so hurt if I didn't go. DH has had loads of time off this year and I can't justify more. I think I'll just do a few rain dances!

Argh at the SENCo being DS2's teacher for next year. At least you'll be able to update her on how amazingly supportive the secondary school is! I hope they go to bed o.k. and your OH appreciates what the boys have done. How is your surgery recovery going?

Sorry for the radio silence, things went from bad to worse. DS isn't currently going to school due to the fact they have got a couple of situations horribly wrong and his aniexty is sky high and he is refusing to go in.
So much has happened in the last couple of weeks and I feel completely drained and not entirely sure how I am going to make it until the end of term.

Has your school had your sports day yet? Do they make DS do it? Or can they give him the role of score taking or some such thing?

Sorry to hear things haven't been going well. Don't worry about not feeling like posting, it's your thread! If it helps to post about it then I will always be happy to lend a sympathetic ear/eye but if you'd rather not that's cool too. Is doing more days at the secondary an option?

Sports day is next week. It is on a day DS1 is supposed to visit the secondary, but as I pick him up at 11.30am to do that and sports day is 9-12.30 I am not sure it is going to work well. He has a full visit day next week as well, so I'm thinking I will have to cancel the 1hr visit as it will just cause so much stress. I'm going to ask school what their sports day plan is for DS1. Last year he coped really well until the skipping race, which he was forced into doing despite crying. I got really cross about it so I want assurance that they will back off if he starts getting upset.

You are an amazing sympathetic ear, really helps to be able to get things off my chest.
Sounds like cancelling the hour visit might be best and hopefully they will listen to you when it comes to not pushing DS too much at sports day and hopefully they can put an alternative plan into place in case.

We are trying to decide whether to sent DS in again this term or not. Currently he says he is never going to any school again which is so heart breaking because he was so fired up about the secondary school.

The two big events that seem to have tipped DS over the edge both started will poorly supervised and poorly managed playground situations.

1. A child hurt ds's friend so DS asked him to stop and then he turned on DS and kicked him and then the child's older brother pushed DS to the floor. The older brother is in ds's class and DS was very upset. From what I can work out the younger one had been hurting and picking up ds's friend for quite some time and no one had noticed. This wasn't ideal in its self but what makes it worse is the next day ds's teacher decided to merge to of the groups together, Yeap you've guessed it ds's and the one that not only had the child that has been bullying him all year but also this child that pushed him. So DS came home in a total state and refused to go back in.

So had to go in to sort that out, they were totally baffled that it might be a problem because DS didn't say anything at the time cue me head banging the table 'he is Autistic and really struggles with communication, he will only express how he is coping to a select few'

He went back to school, with lots of reassurances, lots of explaining how the situation had been solved etc.

1. Monday this week DS was playing with a group of children and they had skipping ropes, they starting playing a game that involved chasing with the ropes and whipping each other (MTA saw and just let them carry on, walked off without stopping a game that was clearly going to go wrong) so suprise suprise it goes wrong, DS whips someone too hard, they get cross and pull the rope out his hands, he gets rope burns and completely loses it. Then tries hard to walk away saying 'i am cross, go away or you will get hurt' children crowd closes and call more people over, children start shouting and taunting DS, no staff in sight, DS starts hitting people, still no staff in sight, DS runs off and pulls up lots of plants, finally someone tries to talk to him, they try and tell him off, DS runs off into the school woods where his t.a finds him, takes over an hour to get him back in the building. They don't manage to get him back into class at all. To really cap it off, they didn't call me or my friend that is down to pick up if need be and just let DS walk home himself whilst I was at work. DS thankfully walked to my friends and she found him on her doorsteps in tears.

He didn't go to school yesterday or today, a friend kindly had him both days. He is still refusing to go back and he keeps having panic attacks and is getting very little sleep.
The Senco was waiting for me on Monday when I went to pick my youngest up from after school club and seemed to be expecting me to have a magic wand to stop him getting angry. She also suggested maybe he shouldn't go out at lunch times (tried not to laugh in her face because we suggested that ages ago) then the head teacher turned up (I felt totally ambushed) to have a go at me for telling the t.a the class teacher was incompetent. T.a asked me one morning what was up and I said 'class teachers incompetence has led to him not wanting to be in school again' okay possibly shouldn't have been so blunt but it was a completely true statement.

Arghhh this is really long and is only the top of the iceberg of things that have happened recently. Sorry to not be clearer, it's a bit of a rant.

They really are shit. I can't believe they didn't ring you or your friend and just let him go. Although actually I can! I remember you asked about him staying in for lunch and they came up with it being allowed on some days but not others. The whole wide-eyed bafflement at DS not communicating with them is a really poor deflection technique and something I have come up against a few times. They eventually got it enough to realise it just wasn't going to wash any more, but your DS's school seem intent on not taking any responsibility. The Head has a nerve having a go at you after the long list of failures they have chalked up for your poor DS.

Do you have much communication with the secondary school and would they be willing to speak to the primary? I think it's helped that the secondary are quite closely involved for DS1 as it makes primary more aware that they are being "watched" IYKWIM.

The only positive is that the secondary school came to his transition tac meeting and were amazing. My friend came along with me and as she said 'if I hadn't have known I would have guessed the secondary team were his current teachers because they clearly know him better than the current lot.'
Not sure if they would speak to the primary though, they have chased them about forms and paperwork and the like. Just three more weeks to juggle, need to decide if he goes back or not, don't want him to get anymorw stressed or end up in another situation he can't manage but am worried he will be upset to finish primary like this.

That's brilliant that they understand DS, but really poor the school he's been at still don't! I'd say it's worth contacting to let them know things have broken down primary wise. They will want him to have a smooth transition in, so if they speak to the SENCo etc it might spur the school into actually doing something. Do you think there's any adjustments they could make that would appeal to DS so that he wants to try going back?
It's a very tricky one as so much relies on the school but obviously DS has been let down so it will be hard for him to trust them again. It's especially hard when there's all the talk of moving on to secondary and end of term doolallyness sets in. DS1 got his first ever trip to the "reflection room" today. He'd got too rough playing and was being egged on. He took his punishment on the chin and accepts he went too far but he was just enjoying it all too much(!)

His diagnosis report has finally arrived in the post so I need to call the secondary school regarding that anyway so will probably update them on the situation.

How are things? Has DS said anymore about returning to school?