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.

I'd keep him off. If he gets middle rate care you can then claim carer's allowance which isn't loads but it all helps. 7

Drove him down to my parents last night and stayed the night with him, heading off now to get to work in time. As soon as we arrived last night he went straight to bed with no fussing, first time all year I think.

I hope DS got a good night's sleep and his generally feeling calmer.
Re DLA, It's been a while since I filled out DLA as I let DS1's lapse, but I'm sure there's a part for someone who knows the child in a professional capacity to complete. It may be worth taking that bit to the appointments you have to see if they will complete it. The DWP will likely write to the school anyway but as they have been somewhat remiss(!) it would be helpful to get someone other than them (if at all possible) to complete it.

Thanks for the advice r.e DLA form. He had a really good couple of night sleeps and unwinding at my parents and is back to the slightly awkward happy boy we have missed so much. The only anger/aniexty we have had today and when we tried to broach the subject of going back to school.

So nice to hear DS is feeling better. Have school been in touch?

Yes very brief call yesterday, agreed to him not coming back until Monday and have arranged for a T.A to meet him every morning next week. Not overly concerned by things like bullying/aniexty over lunches etc, said it could all be discussed at his next tac meeting, I pointed out that the date hadn't been confirmed, they said they would chase the inclusion team so fingers crossed will hear on Monday.

Where does it leave you with the after school childcare? It's frustrating they won't attempt to deal with the bullying/anxiety until the TAC meeting but I suppose having others there will force them into action. DS1's school don't agree that his "unacceptable" behaviour is anxiety-driven and it's very frustrating.

We are going to have to rely on friends to look after him from now until Easter holidays. I'm booked in to have an operation a couple of days before the holidays and we are hoping that he will be confident enough to walk home after the holidays knowing that i am at home. The plan is to hand my notice in after Easter and become a sahm at least until he has settled into Secondary school.

I'm sorry to hear your ds's school doesn't get the aniexty side of things either. I am always clear that i don't think his aniexty means he should be allowed to behave how he wants but that if they acknowledge it preventative tactics are far more valuable than knee jerk reactions to his unacceptable behaviour.

The moment has arrived, time to persuade DS back into school!

Just to add - my DD had a dreadful time at Primary. So bad that the Head took it upon himself to write a letter to her secondary "warning" them about her.
I liaised with the Secondary school, and she had a really easy transition. Got a Prize at the end of her first year for "most improved" (thanks Primary Head). And is now coping brilliantly, with only occasional wobbles.
Hopefully Secondary school will be okay for you too.

Fingers crossed the plan all comes together and I hope DS has as good as day at school as is possible

I've got DS1 at home today as he broke down last night. Really reassuring to hear secondary has worked better for your DD mummytime. Awful behaviour from the primary head. I wish I could be surprised!

Mummytime- what a horrible head teacher, but I am also not surprised. Glad to hear she is doing well at secondary. The contact we have had with secondary so far has been very positive, so hopefully all will be well.

Frayed Hem- Hope your DS is feeling better today and the day off helped.

DS went into school okay yesterday, he wasn't keen but he did go in, came home okay and went for a bike ride but dinner time onwards just kept saying I'm not going again, just about to wake him so will see how he is.

My method with my (officially not ASD) older DD is to ignore protests, and just "act as if she is going to comply". It often works, and is certainly better than arguing.

Admittedly I annoy her when I do my personal verbal reminding of what has to happen today (even if its just for me).

For secondary do be open and honest - if you are lucky it will be fine. some still can't cope even in younger DDs school, but then it's worth having a plan B, but at least you've given it a good shot.

That's really good he managed ok yesterday, hope today brings more of the same. Also great to hear secondary are being positive. DS1 has an ASD unit placement for secondary and it blew my mind to speak to people who were unfazed and seemed excited to want to help DS1.

I've got DS1 off again but I am at least getting contact returned by school. Hopefully they will get some stuff changed so he can return.

So the last few weeks have been hellish and I am totally exhausted. Today we finally got DS's autism diagnosis, today is also the day I go in for day surgery. Timing wise it's hectic but glad we know now.

Sorry things have been difficult. I'm glad you've got the official diagnosis now and hopefully that will bring support and protection for your DS.

Hope all goes well with your surgery

Thanks Frayed, operation went well, back home already.

Hows your DS doing, is he back in school atm?

I feel relieved to finally have a diagnosis and pleased that hopefully it will lead to some support but a part of me feels a bit sad, having it all confirmed, letting going of that tiny hope he might still 'grow out of it'

Glad all went well. Are the before/after school arrangements for DS working out o.k? Have you got a date for the TAC meeting?

It's completely normal to feel a bit sad too. I cried so much at DS1's dx they no longer do assessments that close to Christmas anymore . I've got DS3's assessment next week and I think it's the same team. Hopefully I won't lose the plot again!

DS1 is back at school, he was off for 3 days and school agreed to make some changes (that should have already been in place). The Class teacher went off on one at me(!) so DH ended up going up to the school and seeing the Head. To give her credit, she has taken ownership and now DS1 is a lot more settled and the teacher and TA's are feeding back positive information. And DS1 is no longer being "rude" which was what the teacher kept complaining about.

Had an awful encounter with one of the TAs at a party. Purposeful loud conversations about rude children and how wonderful the class teacher is. But as DS1 is settled and happy I am just trying to keep an eye on it to make sure she isn't taking it out on DS1. The teacher from his secondary is going in tomorrow and has another visit planned for after the Easter break. So that should keep the pressure up too (hopefully!)

Hope you get as much rest as is possible.

Glad to hear your DS is managing okay at school again, sucks that the teacher behaved like that, hopefully it all stays a bay for the rest of the year. Good luck with your ds3's assessment. They are quite draining things aren't they.

School runs are going okay ish, school had a panic when I said we wouldn't be able to send him if they stopped the temporary morning support they had put in place so that has been extended with a new member of staff focusing on him and one other child, starting today, so fingers crossed. After school is a bit trickier, involves relying on the one friend of mine he trusts quite a lot.

We don't have a date for the Tac meeting yet but the senco emailed to ask who i would like invited so hopefully things are on the move.

DS is currently refusing school and I'm stuck in bed so it is really hard to hear him.

Thanks. I loathe the teacher now and I don't want DS2 to get him next year even though DS2 will be fine.

I'm glad the school have extended the morning arrangement but I do wonder what they were expecting you to do without being able to put him in the breakfast club. Is anyone from the secondary school likely to be able to attend the TAC meeting?

I hope DS made it in ok. When do you break up for Easter? it's Friday for DS1 and it can't come soon enough.

I know what you mean, ds2 is super chilled and takes everything in his stride but I really hope he doesn't get ds1's Yr5 teacher down the line because I really can't stand her and she reported us to ss so I would hate to have parents evenings with her again.

I'm hoping someone from the secondary school can attend, although I am super annoyed with the primary school atm and have a few complaints to make at the meeting so might invite the secondary school to the one after so they don't think I'm an angry mum that's going to cause issues (I often am but don't want them to find out too soon!)

DS left the house okay with oh, but oh said the new t.a wasn't anywhere to be seen when they arrived but did turn up after he had taken ds2 into class. Yes we break up Friday lunch time, can't wait. Will probably head down to my parents so I can recover and the boys can unwind and just relax.

I'm not surprised you don't want DS2 getting that teacher. That must have been an added stress you could have done without. DH is doing all meetings that involve the class teacher now. I feel a bit silly, but I cannot be in a room with him being all polite when he is so different when it's 1:1.

I see your dilemma Re inviting secondary. DS1's class teacher actually rang DS1's secondary teacher complaining about how rude DS1 was and how he can't have him behaving like that because of all the other children in the class. I didn't hold back with my version of events!

FFS at the TA not being there. They really don't get it done they. Going to your parents sounds like a brilliant plan and hopefully you can all get some quality rest.

Your ds's teacher does sound truly horrible, fancy going out of their way to call the new school and complain about your son. Just keep reminding yourself only one more term to go!

Thankfully ds1 got on well with the new t.A, apparently him and one other child are going to be designing stickers on a computer programme in the mornings, he seems happy with that.

I wish Oh could do all the meetings but he works such long hours he can never get away for them. I am going to be taking another person with me to all future meetings, I always forget things if I go on my own.

The teacher is quite something. DH thinks he has genuinely changed his attitude towards DS1 but when he met with the teacher the Head was also present so he's hardly likely to be anything but positive. He's only been at the school since January. But yes roll on the End of Yr 6.

That's really good DS1 has already bonded with the TA and they are making use of the time in a rewarding way.

It must be hard trying to manage it all with your OH's job demands, as well as working. DH runs a business with his dad, so has a lot of flexibility but with so many appointments recently it has got a bit ridiculous. He won't be able to after the summer as FIL is retiring so I am hoping the transition to secondary for DS1 and primary for DS3 goes smoothly.