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.

Hopefully it's just a case of they have to write that to try and put people off. But as you say they should at least authorise ds1 so only half the fines.

Yes it was a much needed day, ds2 got loads of attention which he needed and ds1 was engaged in the animals so didn't react to ds2 getting extra attention.

Back to school tomorrow, so we are currently having a sobbing sleep refusal, medicine refusal kind of evening. We thought the cat was missing as well but thankfully he has turned up.

Well I've handed the letters and forms in so I shall see what happens.

Did DS go to school o.k? Hope you've managed to get a meeting with them.

Yes DS went in okay, we agreed he could go straight in to help with the infants and not into the sats revision.
They have agreed to have a meeting at 11, just getting ready for it now.

I hope you get the time authorised.

Huzzah super successful meeting. Started off on a low the HT said 'ds1 is doing sats' but by the end of the meeting I had confirmation that he would not be doing the sats, he would be going on the trip, they would do his visual timetable and they would liaise with the secondary school. It wasn't an easy meeting and it was hard work to get to that point but it was worth it. The youth worker from the youth club ds1 attends came with me and it really helped to feel I wasn't alone.

Well done! That's a brilliant outcome given how they've been so far. So pleased for you and DS.

Grrr it's definitely a case of one step forward two steps back. So the outcome from the meeting was successful but as I said it wasn't an easy meeting. The evening afterwards some more information came to light from my DS and I am fuming.
When we arrived for the meeting the HT walked past and we had to wait an extra 20ish minutes, she then came back took us to her office and started the meeting all smiles with 'to make things clear ds1 will be doing his sats, it's my decision' we discussed back and forth about the fact he wouldn't, mentioned doctors notes, self harm etc. She asked if it was okay for her, the deputy and the senco to leave the room to discuss it for a few minutes. Came back in and said 'yes your right, ds1 will not be doing sats, I'm sorry he is a bit upset because I told him he was doing them, I've let him know now but he is still a little upset' (thought it was odd she had gone out and told him he was doing them then not but was pleased with the result so didn't ponder on it) then went on to discuss the residential/timetables and other such things.
Meeting finishes and we go to leave, find ds1 in the entrance hall, face is very red and blotchy and he is refusing to go to class, has a t.a and a member of the support team with him. I gave him a big hug, reinforced the fact he wasn't doing sats and was going on the trip and he agreed to go back into class.
So all afternoon it's bugging me what did the HT mean she told him he was doing them, when did she tell him, when she nipped out of the meeting? So I checked with ds1, she told him straight after assembly, assembly finished when we arrived, so when we saw her wander past us that must have been when she told him (before the meeting to discuss what was happening) she then left him in a total state, crying and repeatedly saying 'i can't' whilst destroying a display on the wall, walked back to us and held the meeting not mentioning that my DS was in a totally distraught state. Then presumably left the meeting to see if he was still upset and on finding that he was decided to finally believe us and realise he wouldn't be able to manage them. So in essence using DS for some kind of unethical Guinea pig. She basically played with a vunerable child's emotions to find out whether the reactions we mentioned were true or not. That's not on is it? Also although he is pleased he doesn't have to do them I think he is a bit anxious she will change her mind again

Sorry for the extremely long post

That's just so awful, your poor DS. She knows he has anxiety. She knows he has ASD. She knows he self-harms. She knows that qualified health professionals have said he shouldn't do the SATs. She knows the SATs preparation has caused him distress. And yet she still decided to do a quack pseudo-psychological test to see for herself? I'm not surprised you're angry, I'm not sure what I would do in your position but I'd really struggle to let it go.

Oh wants to make a formal complaint. A member of staff spoke to me outside of school and suggested I made a formal complaint. It's so tricky, I know technically she can't hold a complaint against us or DS but I feel really wary of doing anything until he has been on the trip.

Yes, I can see why you'd not want to risk it now, as she may provoke DS1 on purpose find an excuse for DS1 not to go (i'm thinking if there's a minor incident between now and then). It's not that long until the trip is it? I'd get the complaint all prepared and hand it in when you collect DS1 on his return. It's really, really poor, imagine if DS1 hadn't been able to tell you, which is always a possibility with ASD.

Yeah only a couple of weeks until the residential so going to hold off until then but as you say have it already to go.
DS was asleep by half 9 last night, the earliest in months, it really was the Sats that was at the centre of his aniexty. He doesn't exactly skip for joy going to school now but he is certainly a lot less reluctant.
Feeling rather annoyed the dcat has woken me up at 4 instead!

Brilliant news DS1's anxiety has reduced so much already. And it didn't cost the school a penny! I hope you managed some rest after your early start, how is your recovery going?

I've hit a wall of non-communication. I am waiting to hear back from the school (on 3 issues), the specialist teacher, the secondary school and also the mental health service. I'll chase them all up again next week, but I'm starting to wonder if it's me, if they're all ignoring me?!

Sorry to hear your having to chase people up, I get so fed up of chasing people and also begin to wonder whether they are all ignoring me. Hope your managed to get everything sorted.

The deputy told me that ds1 was like a different child and it was so nice to see him walking into school happily. I really had to bit my tongue and resist the urge to go 'told you so'

Still nothing back from the school, I shall be going in tomorrow. Nor from the mental health service either. We have had confirmation that DS1's transport application has been accepted and have agreed some dates for DS1 to do some visits to his secondary so that's something.

I admire your restraint with the deputy! We had similar after they made a couple of tiny adjustments for DS1, the class teacher couldn't believe the change. Yes, amazing how a tiny bit of understanding rather than discipline can work wonders.

The residential trip must be soon now? I hope DS has a brilliant time.

Glad to hear you have some things sorted with secondary, currently we are finding it easier to set things up with secondary as well. Hope you have heard back from everyone else as well now.
We had a fantastic week, DS walked into school on Monday and said 'now I haven't had to worry about Sats I think I'll give them a go' he also said he didn't want to be different to everyone else. He got to do them in a small one with one friend and a bowl of Haribo, he was happy with the English ones, stressed a bit more on the Maths but did them and feels proud that he did.

Just wanted to add to this thread for you!

I've also been in the situation where a school feels an SLT ambush and telling me what is happening will solve the issues rather than discussing the issues.

However you'll be pleased to hear once ds was out of that environment he flourished.

It's quite astonishing how one child can be 2 different people in different environments.

That's fantastic news, well done to your DS . Just shows how the pressure is counter-productive for some children. Same here, DS1 has been going into school bouncing and really tried hard. English went better than maths but tbh just getting through them is a massive achievement in itself.

I've heard back from everyone now, the big one is the holiday has been approved as special circumstances for both of them so we won't get fined. Really surprised and really pleased.

How's your recovery from the surgery going?

I'm so glad they have authorised the holiday for you, that's fantastic. Glad to hear your DS had a good week Sats wise as well. Yeah Ds1 found English much more manageable than the maths, did get a bit stressed about the maths papers (particularly when the lead maths teacher asked if he could actually try on the next paper after he had tried his very hardest)

Recovery is slower than I would have hopped, been signed of until half term. One foot feels nearly back to normal the other is still quite swollen and sore. Apparently I'm not resting and elevating it enough- not quite sure when the Dr expects me to do that!

Thanks. Although school admin had told me it was going to be approved the LSA told me the Head had said it wouldn't so the letter confirming was a welcome relief.

Wtf, I can't believe a teacher would say that to any child, but saying that to your DS is so out of order. Only upside is at least DS hasn't got long left there. Have you had any progress with his transition to secondary? DS1 is starting weekly visits next week. They've arranged it so another child who is starting in the unit has visits at the same time. Just an hour a week, but I'm hoping it will make him less anxious as all his classmates will be going to the local secondary so he won't know anyone at his new school.

Sorry you're recovery isn't going as fast as you'd like. I hope you're able to get some extra rest, but I can see it's pretty difficult to achieve.

DS starts his transistion the week after half term just lunch with the deputy and social stories with her for an hour the first time and then will plan some more sessions after we see how that goes. Definitely two full days in July but playing the rest a bit by ear.

If he is on the autistic spectrum a clear routine could help. Timetable with expectations of what, when and how long. Rewards of what he likes to do for reaching small goals, eg homework at 6 for 30 mins with no fuss = 30 mins own choice activity.
Join a autism support group in your area for parents in similar situation who might be able to support and share tips.
Bet wishes to you.

Sounds like a good transition plan in place for your DS. DS1 had his first session today. He was not happy about the idea of it, and was quite upset going to school this morning so I was none too hopeful, but it went well. He gave me a thumbs up and told me it was o.k when he came out and they said he settled and engaged well. Phew!

Glad to hear that despite a slightly rocky start his day went well, must be such a relief.

Tomorrow is ds's residential trip! I think I may be more nervous than him, which is probably a good thing. He went to sleep by 11 which wasn't too bad. School let him stay at home today to just chill which has really helped, only one melt down- he has left his coat at his friends, said friend has gone on holiday so he had to choose between an old coat in the cupboard or getting a new one. New coat purchased and packed and I'm fairly sure it will stay in his bag the whole time but at least he has one now.

I am panicking over silly things. Will he be teased for having a childish bag/suitcase set? (He won't use any others)
Does it matter that he has so much luggage? (Won't take a sleeping bag, taking his duvet and two pillows)
Will he manage to pack everything to come home? (We have had to wedge it in)
How many things will he loose? (Most of it really doesn't matter)

I really hope DS has a fantastic time. Normal to worry but I'm sure it will all be ok.

And their off! Saw the coach off just after lunch, he was chatting away as they loaded up and on he hopped. Then just as they were pulling off his face started to crumple and he was doing his best to keep waving but was shaking his head at the same time. Haven't heard anything though and they should have arrived by now so fingers crossed he has settled and is ready for a weekend of manic fun and very little sleep.