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.

Yes we are really banking on a smooth transition to secondary school as well. I was hoping to hand my notice in after my sick leave but financially we are not sure now, I'm going to ask to reduce my hours and hope they want me enough to agree to that.

It's so hard to tell if a teacher has genuinely changed and taken on board what has been said, when you have lost trust it takes a lot to build it up again.

Oh had a meeting at work this morning and needed to be on time so typically ds1 refused to put his shoes on or get in the car, it was horrible listening to him scream the place down but I am stuck in bed so nothing I could do. Will be a challenge for the new t.a, hopefully she is up to it. I feel completely useless and I know I could of minimised the melt down if I could have got downstairs, Oh had clearly put the wrong lunch box in ds1 bag, grrrr.

I can't wait for DS1 to leave primary but I do wonder how secondary is going to work out. The secondary seem great but DS1 is just so disengaged from education I really don't know if that's fixable. I hope you get the reduced hours agreed. Did you have any joy with the DLA forms?

Sorry this morning didn't go well. The TA sounds very engaging so hopefully DS1 will have settled. Roll on the Easter break!

Yeah our DS is also so disengaged with education that I'm not sure what to expect secondary wise.

Haven't even started with the DLA forms yet, know I need to just never seem to find the time. Oh is very much head in the sand about the diagnosis and seems to be punishing Ds more than ever.

Can't wait for them to finish at lunch time today, hope you have a lovely Easter break

The forms are massively off-putting. Also having the dx report will probably be helpful for the application..Not that it helps, but DH managed to cause a huge amount of unnecessary upset this morning. Maybe when you get the dx report through it will help your OH to understand a bit better.

I hope you have a lovely break too.

Argh staying at my parents whilst I recover from my op and he keeps screaming for hours about going home. Then he is fine, totally fine, happy even and then the screaming is back without any warning normally due to some tiny thing being wrong. It's exhausting and I'm tempted to go home but I can't cook, clean, do anything with the ds's so I can't really.

Sorry DS is unsettled. I think sometimes you just have to go with the least bad option so I would stay with your parents. He may be struggling with you not being well (obviously it's more difficult for you but hopefully ykwim) so being at home may not settle him.

My parents have had to nip out this morning, the took my younger ds with them. Ds1 seemed calm when they left, unfortunately the internet went down for a few minutes, in the last hour he has run away (got as far as the top of the drive in just his boxers) Threatened me with a cable and two saws and has thrown things pushed things, including me and I am absolutely shattered, my feet feel like they are on fire and I have missed my medicine because I couldn't risk leaving him. Right now he is playing with water and washing up liquid in the kitchen, calm as can be, like nothing has happened, he was using the washing up liquid as a threat, making the floor slippy and then he sat there squeezing the bottle until he was calm and is now using the kitchen whisk to make bubbles. I really don't think I can manage many more days like this and just wished I had refused the op.

Oh no, should you get checked over? It's one of those awful but unpredictable coming together of events. Is one of your parents staying back with you and DS1 a viable option?

Sorry I didn't reply, it was a rather stressful week! Feet seem okay after everything, still incredibly sore though. Back home now and will be flying solo looking after the boys after the weekend. Dreading it to be honest. DS1 seems constantly angry and worried about everything and DS2 is ill.

No need to apologise, it's your thread and you don't owe any updates. I'm glad you're o.k but sorry to hear DS1 is not doing so great and DS2 is ill. Try and make the most of tomorrow to rest. Is OH going to be around at all for mornings/evenings? Is there anyone who can come round for a little bit?

Yes Oh will be able to do ds2's breakfast before he leaves (ds1 will still be asleep) and he will be back by bedtime.
A few friends have offered to take ds2 out on day trips but it depends whether the rash he has is a reaction or a virus.
Ds1 has one friend he can go to for the odd playdate but not the whole week.
Oh is going to cook some meals that I can microwave for myself and ds2, ds1 won't eat any kind of bake so oh very bravely (because he is a total food snob) picked up some microwave chips and such like for him- dreadful food but one week won't kill him.

Hope it all goes to plan and DS2's rash is "just" a reaction rather than viral. Lol at your brave OH and the microwave food. DS1 is exactly the same re baked food.

I know it's still difficult atm, but look how far you've come since your OP in Feb.

Thats very true, DS had a massive meltdown last night but when he calmed down he still settled himself to bed in his own room, which until recently he never did.

I'm hoping for a nice calm day today, he is still asleep atm, will let him sleep for a few more minutes.

Have had some bad news regarding term time. The only friend I have that DS will walk home with has just decided to home educate. Can't begrudge her decision but does mean up the creek without a paddle whilst I'm recovering from this op.

That's really good DS managed to calm himself, I hope today has been uneventful for you.

Argh, that is really bad timing. Has your friend mentioned the walking home thing? Is there anyway you could ask her to cover at least a couple of days next week to give you a chance to work something out? Anyone who drives that you could get a lift up and back again with DS?

I think she wants to do the whole unschooling thing so don't think she will want her ds's near the school at all.
Oh can drop of in the morning so I think I'll just have to get taxis for the afternoons, hopefully it will only be for a couple of weeks.
DS did manage to go to the library on his own for half an hour this afternoon, he would so proud when he came back with his new book. I feel like I should be happier but I have spent most of the day in tears. Feel completely trapped and isolated atm.
How are your holidays going, I hope your having a relaxing time.

Aww well done to your DS. It's lovely when they show pride in something. It's understandable you're feeling down, being physically unable to do much after an op is going to take its toll even without everything else to manage.

It's been o.kish. here. Struggling a bit as DS1 is really unhappy away from the house but the other three really need to be out and about. I've managed one "big" day out and just trying to make the most of the good weather for the other 3 playing in the garden and taking a trip to the local shop.
Got DS1's appointment with the Mental Health service tomorrow. Not expecting much from it as the letter says it doesn't envisage he will need ongoing help so no idea what the appointment is actually about. DS3 got his ASD dx last week and I managed a shrug and smile rather than out and out hysterics like last time!

I understand the not being away from the house, it's so fr isn't it. Poor ds2 is rather bored this holiday and watching far too much t.v but the only days out we could do would be to places like indoor soft play and we would have to go with friends whilst I'm not driving, ds1 would not cope with that at all.

How did ds1's appointment with mental health services go, I hope it was more useful than the letter implied.

Glad you managed to handle ds3's diagnosis well, I'm never sure whether it's a good thing or not when you get of the accepting stage, probably is for the best. Don't forget it still is okay to feel sad about it in your own time if you need to.

Ds1 ran away yesterday, only for just over half an hour but still very stressful. I hope it's not a new thing he is going to do.

Soft play is off the cards here too. Last time I took DS1 as well he spent the whole time pacing about as it was just too much. Although at the day out last week, DS1 actually joined in (until it was time to get something to eat) whilst DS2 spent a lot of time sulking. I think DS2 desperately needs some 1:1 time so I'm trying to sort that out. It's hard to balance everyone's needs and I seem to get it more wrong than right!

The appointment was actually really helpful and I got the impression they will refer us on to something else, though we don't find out until next week. DS1 was really agitated and sat growling and clenching his fists and wouldn't really answer any questions apart from to say he doesn't have anxiety and to get annoyed when we explained his favourite game incorrectly. It did make me realise how small our world has become. I tend not to see DS1 as having much in the way of additional needs but going through his sleeping, eating, sensory issues, trying to go out etc and what it means for us as a family gave me a bit of shock!

Sorry to hear DS1 ran away, you must have been so stressed. Did he come home by himself? How are you feeling? Are you recovering o.k. from the op? Is it back to school for you next week too? I'm not looking forward to it at all as I expect the SATs mania will hit new levels!

Glad to hear the appointment was better than you expected. It is a horrible eye opener when you have to discuss day to day life with an outsider and realise just how different it is to most people.

Ds1 will join in at a soft play if it's virtually empty- we have a local one that is great in the winter but school holidays are just a no. I get what you mean about ds2 needing some 1:1 time, it's so needed for other siblings but so hard to find the time to give it. In theory ds1 is still going on the school residential so fingers crossed we can give ds2 some quality 1:1 time then. I'm sure you don't get the balance wrong, feels like it a lot of the time but we all do the best we can do and I'm sure our children are happy with that.

Yes he came back by himself, two of my friends kept an eye out for him but he didn't need to found and bought home luckily. I felt so helpless, tried to check if he was lurking at the bottom of our street but couldn't even get that far!

Yes back to school on Wednesday and I fear you are right with regards to SAT's. Wish the school ds went to was more like the one I work in (which happens to get some of the best results around us) our yr6 class stopped SATs practise mid march, class teacher says any longer and you over whelm them and stress them out. I'm looking forward to them being in school because it will be easier for me to recover in the day time, I am not looking forward to the juggling act of getting them to and from school.

It was a real revelation tbh. I think as he's the eldest it's just how life has become and we have no choice but to work around him. In-laws are having a few people over their's on Sunday but I'll be staying here with DS1 as even that will get him anxious and angry.

It's a fine balance isn't it. DS2 won't join any clubs which I think he would enjoy but he just refuses. I try and make sure he gets enough 1:1 but time slips away. DS1 initially liked the idea of the residential trip but when it came to the crunch he was too worried about not having his own bed and his "tech". So we're taking a term-time holiday instead. The in-laws and my mother are coming so we will have plenty of adults to cover all the children so I'm hoping they all enjoy it. It's an activity based hotel so DS1 doesn't need to go anywhere and it has wi-fi so I am hopeful he will be o.k. Slightly panicking we may get a huge fine after the whole school time holiday appeal thing in the news, but it's done now. If we get hit for thousands you may see me in the Daily Mail with my sad-faced children

Your school sounds very sensible. Really if the teaching is going well it shouldn't take that much to get them through the SATs beyond a few mocks here and there. DS1's school put on a SATs booster class over the Easter holidays. Needless to say DS1 didn't go! Their results were particularly bad last year and they got Ofsted Inadequate so are under pressure. But really, it's all a bit too late to make any meaningful impact. I also think the class teacher is going all out to prove what a wonderful teacher he is to the Head but I see through him!

I hope you manage to get them to and from school o.k and you finally manage to get some proper rest. Is your OH off over the bank holiday?

Arrghhhhhhhhh is all I feel able to say today. Term starts tomorrow, DS is very adamant he is never going back. Had a meeting at school today, didn't go well

That doesn't sound good. Was it the TAC meeting or a general one?

Nope it was a let's get the parents in and tell them off kind of meeting. The deputy head called on the last day of term and asked if either of us could come in today to discuss going back to school, sounded okay so agreed. In reality it was actually the head, deputy and senco and the head started the meeting with a file of 'behavioural incidences' from the end of term she wished to discuss.

An ambush then. That is so out of order especially with it being 3 of them, all senior in their roles. I suppose them accepting responsibility for not supporting DS properly was out of the question. How was it left?

No one of the incidents they mentioned was apparently a member of staff asked DS how they could help with getting him back into class and he replied 'seeing as you have failed to support me for the last three years and have not done any of the things you have said you will do I don't expect you can do anything' it was very hard not to cheer for him at that point.