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 they will stick to all of it this time. Have the autism assessment team called you back yet?

No I'm going to chase them again on Monday. Half term means I will have more time to chase all the different people I need to speak to.

Chased the autism assessment team and have had not only one call back but several and they actually seem to be listening, still no date but have added him to a few extra clinic lists to try and get him seen sooner. School wise things went massively down hill on Friday and each day he wakes up and checks it's still half term because ' I am never ever going back to that school' normally we get a bit of a break mid holidays but his aniexty is sky high and preventing him from enjoying anything.

I'm glad the Autism team are being responsive; I think someone really just acknowledging how difficult things are can make a whole lot of difference. Hopefully the wait won't be too much longer.

Was there any particular trigger at school on Friday or general overload?

I think it was general overload with a few triggers throughout the day, the first being that it was crazy hair day for charity, the second being that he had to go outside at lunchtime and the final one and the one that resulted in a meltdown was getting into trouble at after school club for hitting someone over the head with a toy because the child in question had picked them and when he told the staff the replies oh well I'm sure he didn't mean to so my DS felt it hadn't been sorted and he needed to sort it. I told him that he can't just hurt people but I have told him a million and one times and it makes no difference.

First day back after half term and I am completely broken, I can't juggle everything anymore and I can't see my DS so upset. Don't even know where to begin with explaining.

Oh no. Sorry to hear it's been such a bad day back. You sound understandably overwhelmed, I totally get if it's all too much to try and post about right now, so just a no pressure here to listen if it would help.

Thanks for replying, DS is still up atm so will try and write a post that makes a bit more sense later.

Hope he settles and gets some rest soon.

He's asleep, didn't brush his teeth but did put his pjs on and take his medicine, so on balance not too bad.
Over the last couple of days things have been pretty stressful, doing the whole getting ready for school thing so I felt pretty good when both DS' were ready for school on time and only a bit grumpy. Got to school and ds1 realised straight away that the playground was different and that was it he refused to go into breakfast club, dropped ds2 in and took ds1 round to the office to meet his point of contact, she was busy, head came out, was totally useless and couldn't persuade him not that she actually tried, three more members f staff late, all trying half heartedly and I'm now late for work, DS is getting more distressed and I have no idea what to do because everyone I try and leave he just follows me and no one does anything about it, gets to 9 and the gates are locked which means I can buzz out and leave him, he is still very unhappy and climbs the fence trying to get out, I am now very late for work so have to drive off leaving the head trying to persuade him down, I hated driving off but equally felt I had no choice because they won't do anything when they think I will deal with him. Expected a call to let me know he had calmed down/hadn't etc, no contact all day, get to after school club to find that he has had a falling out there and is kicking off, ask where his tent is and the staff no nothing about it, despite the fact I was told he would have a tent to relax in at after school club by now. After school leader was aware of what went on in morning because she saw not because any of the teachers told her, no message for me, nothing in his communication book and one very sad and weary DS who is point blank refusing to consider school tomorrow.

Sorry that is so full of typos and grammatical errors, hopefully you can make some sense out of it.

That really was a spectacularly shitty start back.

Have you ever made a written complaint? I really hated doing it, but in the end it was the only way I got the promises kept.

It must be so hard with the added pressure of getting to work. Can your emergency childcare take him tomorrow? If so I'd probably keep him off and tell school he is just too anxious.

Has school ever asked for any help from the LA? Ed Psych, behaviour support etc

My only emergency support are my parents who are an hour away and a close friend near by who has only just come out of hospital so I feel really bad asking either of them. I will if I need to though and she has offered to pick him up when he has got like this before. I have been thinking about making an official complaint, like you I don't like the idea of doing it but yes I may well have to.
As far as I am aware the only time the school have ever asked for any input from the l.a was when they wanted me to speak to the attendance officer r.e ds1 attendance, all absences were either hospital apps or late in due to aniexty. They wanted me to meet with them so I could realise how much attendance made an impact on learning.

It's never easy to ask, but there's only so much you can cope with too. It's obviously not a long term solution, but if you knew tomorrow DS1 won't be at school and you can trust who is caring for him, you can get to work on time, it would give you a tiny breather. I think when you've had do many meetings that end in the same result (nothing changes) a written complaint is the only way forward.

FFS at the attendance stuff. Are they being strategically incompetent or just ignorant and incompetent? I'd dig around your LA website and see if there are any SEN departments that will speak with parents. I know parent partnership type organisations (here it is SEND IAS) usually have some LA funding so you have to be a little mindful of that, but they may be helpful to your situation in applying some pressure to the school.

Was today any better?

He wanted to go today, still wasn't keen about actually going in the morning but didn't want to miss chess club which is Tuesday lunchtimes and is on his plan as one of his lunch breaks from being outside, so turns out they have moved it to Wednesday, didn't feel the need to tell him, or me or change it on his plan. The senco did leave me an answer phone message to make an appointment though.

I would say it was unbelievable they would forget to tell you chess club had changed, but really it's quite standard for them atm. Did she say what she wanted to meet about?

I requested a meeting before half term so I think she is finally catching up and making it. Im very comcerned that they aren't coping with DS and the changes that yr6 bring and that is before he finds out which secondary he is going to, before sats and before the residential so I am eager to sort things out quickly.

When do you find out about secondary?

I am dreading SATs. It's been nothing but SATs prep since October. They keep going on about improving his writing for extra marks and don't seem to understand it will be a miracle if he gets through the bloody things without losing it!

I think I find out on the first of march. Sorry to hear SATs are so stressful for you as well, yes the preparation seem to start stupidly early didn't it.

DS1's school got v poor results and an inadequate ofsted so they have gone totally nuts.

Fingers crossed you get your first choice and you get the ASD assessment date soon too. Have you decided what you are going to say to the SENCo?

Meant to say yesterday the only good bit of news has been that we do have a date for the autism assessment now! They have managed to fit him in a clinic next month, it's over an hour's drive a way but I am very grateful to have the appointment.
I'm going to ask the senco to make sure she is meeting the targets from his tac meeting, ask her to refer us to early help for support and ask her to arrange a transition meeting when we do know which school he has got.

That's great news on the assessment. I hope you get a good result from the SENCo and things actually get done this time.

DS has totally lost it this evening, has beaten me up and is currently destroying his room, don't think I can cope any longer