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Original poster

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

198 replies

EnglishRose1320 · 07/02/2017 22:41

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.

OP posts:
FrayedHem · 18/04/2017 20:06

He's not wrong is he! What was their complaint about that, the truth hurt their feels?!?

Original poster
EnglishRose1320 · 18/04/2017 20:13

They seem to think he is switched off from school and doesn't want to engage. It was hard not to reply 'no shit Sherlock'
It transpires he also informed them he has been answering practise papers wrong on purpose because the results only matters to the school not him and they deserve to look bad.

Basically they want to get him on board in time to get the top sats results they know he can achieve (and now they can put him on the Sen register, the results they want to make the school look good) Sats are in a week and a half ish, it's not going to happen, I have always said they are too reactive and not proactive but they never listen.

They seemed to think I was going to say, oh gosh, how awful, I'll speak to him and all will be magically well. Of course we tell him that being rude to teachers and not doing your work is not acceptable (even though sometimes we want to high five him) we support the schools behaviour policy, we say the right things to him, it doesn't make a blind bit of difference.
So I told them they were right he doesn't want to be at school and I couldn't see that changing, he is too anxious to do Sats and I don't want him to sit them- they want medical proof.

OP posts:
FrayedHem · 18/04/2017 21:46

They really are something aren't they. No concern for your DS at all. All one way, nothing about what they can do to support him better to make his last term at school as bearable as possible.

Can you get someone to provide some medical proof? DS1's school were similar but even they've managed to understand that a lot of the problems stem from them not supporting DS1 properly (despite a statement since he started) and there's a good chance he won't complete the SATs.

Original poster
EnglishRose1320 · 18/04/2017 22:32

I'm going to phone the gp tomorrow and make an appointment. He has only just had an appointment about aniexty and self harming so I think it is quite clear he isn't coping.

DS is still up and completely refusing to take his medicine, put his PJ's on or do anything that means settling down ready to wake up for school the next day.

The more I think about the meeting the more annoyed I am.

OP posts:
FrayedHem · 19/04/2017 08:59

I hope the GP is helpful. Did DS go to school? Would who you saw for his anxiety write a letter if the GP won't?

I'd really think about putting in a formal letter of complaint. It's quite breathtaking that for a child with ASD who has anxiety and has self-harmed they are only concerned with SATs and want to add pressure for him to perform well for them.

Original poster
EnglishRose1320 · 21/04/2017 10:01

Gp can do a letter but do to practice policy will have to charge £20. That's fine, happy to pay it if it's gets sorted, part of me feels I shouldn't have to but it just needs to get done.
Ds has gone to school everyday they have been back this week but it has been a massive battle every day and I left him climbing the fence to get out this morning.
Was very tempted to take him home but am not feeling at all well and need a few hours to rest. Have agreed to call the school at lunch time to see how things are.

OP posts:
Original poster
EnglishRose1320 · 21/04/2017 12:02

He still hasn't gone in to school, the school just called and asked me what they should do. They are going to try and get him in one more time but then may have to physically move him, I have said that would lead to a tantrum so we will see.

OP posts:
FrayedHem · 21/04/2017 13:04

Oh blimey. Poor DS. If you do have to go and get him I'd be tempted to say to the Head you assume DS not being able to go into school is enough medical evidence to excuse him from the SATs.

Original poster
EnglishRose1320 · 21/04/2017 13:24

No call yet and my friend has just spotted the only Pips trained member of staff in town on his lunch break so who knows what's going on.

What will really make you laugh is a friend who's son is in the same class has been told by the school they don't think he should sit Sats because it will be too distressing for him, he's not gonna get the grades they want and if he doesn't sit them his 1:1 can look after the other two children that aren't academically able to do them. So it's okay to be anxious if you struggle with learning but if your bright tough shit. My friend is having to fight to allow her DS to sit them because he wants to, he wants to be the same as everyone else.

OP posts:
FrayedHem · 21/04/2017 14:21

?!?!?! The school is seriously bizarre. I've never heard anything like it.

I really hope DS is ok when he gets home and today doesn't impact over the whole weekend.

Original poster
EnglishRose1320 · 21/04/2017 15:10

The deputy finally called me back at half 2. She spent ages telling me how it had taken 5 members of staff and over three hours before I could stop her talking and ask her to confirm he was okay now and calm enough to walk home otherwise I would have to book a taxi.
The one thing he is looking forward to is the residential trip, well they have decided they probably can't take him with his current behaviour.
The one positive is they seem to have finally got the fact he won't be sitting his sats.

OP posts:
FrayedHem · 21/04/2017 19:25

How is DS since he got home from school? Does he know he won't have to do the SATs now. I don't know what to say about the residential, it would be heart-breaking for your DS but is there any staff going he has a bond with? Have they been using the residential as a threat? I wonder if that is adding to his anxiety as that would be the worst thing they could do with an anxious child.

Original poster
EnglishRose1320 · 21/04/2017 19:50

When he got home he burst into tears and sobbed until he was hyperventilating, says he is never going to school again including secondary- which he has been really excited about.
He knows he isn't doing Sats, he is worried the school don't know and will still make him so he needs to hear it from them.
Yes it turns out that today was almost totally avoidable and that not only did they shout at him mid panic that if he didn't behave he couldn't go on the trip but various members of staff contradicted each other so he wasn't sure what he was meant to be doing anyway, one said he could calm down outside, another said he couldn't etc.

OP posts:
Original poster
EnglishRose1320 · 21/04/2017 19:51

He is a little calmer now, playing with the cat but every now and again starts shaking and just repeating 'no, i cant go back' over and over

OP posts:
FrayedHem · 21/04/2017 20:03

Your poor boy. FFS at them contradicting each other and using the residential as a threat. They sound more like squabbling toddlers than adults. That's probably unfair to toddlers!

Original poster
EnglishRose1320 · 21/04/2017 20:12

I was all set to fight for his right to go but now I think I might just fight for my money back and take him away instead.

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FrayedHem · 22/04/2017 00:03

They've really put you in a difficult position. If all went well on the trip it would be a really positive thing for DS and help him to connect back with school. but they are just so unreliable at supporting him I can see why you'd not want to risk it. How long is the trip for?

Original poster
EnglishRose1320 · 22/04/2017 00:09

The trip is Friday to Monday morning. So I would be available to be near/go with them Friday evening to Sunday evening if they felt they needed me to. Like every situation with school recently it's not that I don't have concerns about the same things as them safety/his learning etc it's that we come at it from such different angles. I do try and take a step back, imagine it isn't my DS and is a child in the school I work in and I still wouldn't ever handle things the way they do.

OP posts:
FrayedHem · 22/04/2017 00:28

Everything you've said about the school strikes me as management being very defensive about their approach and determined to push their failings on to DS, rather than accepting they need to change. DS1's first school was run in a similar way and it was beyond frustrating to try and deal with. His current school have had some shocking moments, but the Head is a fair and reasonable person so it's been possible to get things sorted.

Do you think the staff actually going on the trip would be open to and willing to follow a plan that you put together?

Original poster
EnglishRose1320 · 22/04/2017 00:35

When DS lost his place at after school club I checked with the staff that will be on the actual trip. I said I am due to pay the final installment and I just want to check you are still happy and feel confident in taking DS. They had absolutely no problems with taking him. I feel they will be fine and have the skills to manage. They are also putting things in place before hand, chatting about food/beds etc and DS is very calm about it. If he is going to get upset you get warning signs before hand. Any fears he has had about the residential we have discussed and sorted and I truly feel he is happy and confident to go and feel it would really help restore his trust in the education system.

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FrayedHem · 22/04/2017 11:12

So those that know your DS feel confident and understand what he will need. It does sound like a power play from the senior management, as it's the only trump card they hold. When are they intending to make a decision by? I'm guessing once SATs week has started and your DS then knows he's not doing them, then that will remove a lot of anxiety. But if they continue to dangle the residential trip it will cause understandable anxiety there. Do you think a formal complaint will result in them digging their heels in further?

How is DS this morning?

Original poster
EnglishRose1320 · 22/04/2017 15:16

DS is okay today, trip to the zoo for his brothers birthday which I thought might be stressful but he seems happy with grandad whilst i sit with my feet up in the café. Have had a few little wobbles but has responded well to the usual tactics and got on with things in a matter of minutes.

I have requested a meeting for first thing Monday and I'm going to make it clear that if they need to make a decision about the trip that is fine but they can not use it as a threat when he is struggling to cope.

I am also going to request a timetable for the next few weeks so we can navigate the sats practice.

OP posts:
FrayedHem · 22/04/2017 16:05

I hope DS2 is having a lovely birthday. That's great DS1 is coping so far after a very stressful day at school yesterday.

Your plan sounds very sensible and I hope you get a satisfactory response from them. I'm drafting out term-time holiday request for DS1 & DS2 for the week DS1's class go on their residential. Theirs is a full school week and DS1 will not cope with staying behind so I hope we at least avoid a fine for him. DS2's is more debatable but we can't really leave him home alone!

Original poster
EnglishRose1320 · 22/04/2017 21:30

I think they will have to accept ds2 as well, even if they don't unless his attendance is very low I think fines are few and far between.

Ds2 had a lovely day thank you. It was lovely watching him read all the info boards out to oh, made me realise he wasn't our tiny boy anymore, although he will always be my baby.

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FrayedHem · 23/04/2017 09:30

DS2's attendance is o.k. but a school newsletter came out on Friday saying any unathorised absences of 10 sessions or more will result in a fine. Perfect timing! I'm hoping they at least authorise DS1's so then we "only" have a fine for DS2.

Sounds like you all had a lovely day. A much needed family day away from all the school hoo-ha.