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Not sure how to get support for ds - masking in school.

(53 Posts)
PhilPhilConnors Fri 06-Nov-15 11:32:20

Ds has HFA/PDA.
I spoke to Ds's head teacher this morning, as we're still having loads of anger and meltdowns at home following school, and got what I feel are some very unsatisfactory answers.
In school O completely masks, comes across as NT (although can be rude).
Academically he's doing ok.
He gets on with his teacher as she's generally PDA friendly, tries to get the best out do all the children. He doesn't like it when he's told off and will be angry at home most evenings, and it will be difficult to understand what it is about as from the teachers' point of view, the day will have gone fine.
He has problems with certain teachers, not sure why exactly, maybe they are a little stricter, not as familiar, speak in a way that he takes offence at, but won't show any signs of this at school, but melts down at home.
The HT says they need to carry on as they are as this will help him learn that he has to do as he's told, particularly as he will start secondary next year, and no-one will take the time to word things differently, or take a different approach.
I feel that certain strategies, different ways of wording things (strategies that we've found in the PDA resource website), need to be put into place so that he doesn't feel as anxious.
We know at home he only learns to do as he's told when demands are stripped away and he is allowed some control. At school things tend to build up until he's more suicidal and making threats against those he dislikes.
Because no-one in school can see any behaviour, and he is unable to tell them how he feels, even when 1:1, they don't think he needs support.
So what do I do?

(If you've seen this post somewhere else, it's because I'm trying to get as many thoughts as possible, we're so worried about ds, as masking isn't the same as coping, but no-one in a position to help will listen!)

PhilPhilConnors Fri 06-Nov-15 11:33:54

Wanted to say as well that he tends to be very violent, which is one of the reasons we're so worried. We have other children at home, and as ds gets bigger it's getting more difficult to deal with the violence.

PolterGoose Fri 06-Nov-15 11:48:56

Message withdrawn at poster's request.

PhilPhilConnors Fri 06-Nov-15 12:08:17

Thanks Polter.
They want him to explode in school, but I don't think he will (yet!). He tries to show it, but it looks like he's being rude or giddy, and they don't understand.

I think he needs teachers to understand that when he's being rude, he's actually anxious and may need choices so he feels more in control. He responds better to being asked rather than told.
He finds supply teachers and strict teachers very difficult, but I'm not sure what can be done about this - perhaps them being given some specific info about him so they can understand him?
There are things that work at home, but we're seen as pandering to him, but if we don't do that things get more and more unmanageable (because he has PDA, which I kept saying to the HT today)
I've given a notebook for someone to fill in when he's told off, or if there's been an incident with another child, but nothing has been done.
The thing the ht said was that he is fine in school, has friends, engages fine with everyone, and is very unusual for a child with ASD, as he's not on the periphery at all, he's right in there, looking fine.

He won't do the 5 point scale in school since a teacher at the last school looked at his number 4, laughed at him and told him he wasn't because he looked fine. He will sometimes use it at home, but it's not as successful as it was.

I am very worried about secondary as he has a real issue with less familiar adults.
We're worrying about next term as his teacher (who he likes) is going on maternity leave so there will be changes.
The Ht says that this is life (I know) and he will just have to get used to it (but he has PDA! hmm)

It's difficult to get people to understand.
One day, when I'm grown up, I'm going to get some qualifications that will mean I can research masking and spout about it with credibility.

NiceCupOfTeaAndASitDown Fri 06-Nov-15 13:27:48

I'm not sure how much I can help but I do understand. DS is as yet undiagnosed but similar in that school don't see what we see. We get the explosions at home, they have a very sweet, confident and popular boy (never mind the fact he thinks he's got no friends) and we are looked at like we are mad when we suggest that he's anxious or the hall is too loud etc.

Have you seen the Luke Beardon thing on masking that PolterGoose often links to? There's a few bits on another site I have printed out somewhere - I think it's the NAS one, I will try and hunt them out for you.

The thing that bothers me is that surely schools should have the wellbeing of a child as a priority? Forgive me as DS has only been in school since September so I'm being naive- but if there's the behaviour we are seeing at home then there are things wrong at school and I feel it's our (parents, teachers, TAs etc) responsibility to find out what's causing stress and anxiety and work together to find ways to manage it. If that happened there would be less shaking up of the Coca Cola bottle all day and our children would be able to behave better at home which would cause a hell of a lot less stress to us as parents. Like you say just because they're not seeing distress manifest itself in a typical (NT?) way - and most of these kids aren't able to verbalise what's troubling them, maybe they don't even know sometimes - doesn't mean that it's not there.

I hate this word FINE. What they mean is not causing significant trouble and not struggling too much academically. If they could take a peek at what happens the minute our kids are somewhere or with someone they deem as safe they would be flabbergasted and would definitely not think they were FINE ffs

I agree that a meltdown or something might make them see sense if it happened in school but I also think some schools might see it as bad behaviour and it be treated as such. I have no idea what the answer is but masking is a genuine thing (Jesus I think I've been doing it my entire life and even fooled myself in many ways that I was 'fine')

I've been lucky enough to get DS teacher to agree to a home/school communication book and it's absolutely right that they are seeing a completely different child to the one we see at home. But whether they see it or not the anxiety driven behaviours are all there and causing stress to the entire family.

Is the Senco involved at all? Is there really no way we can get staff on board with the whole idea that anxiety isn't always obvious???

I really feel for you, we are only a couple of months into reception and I'm already feeling exasperated, confused and stressed out with the whole thing.

Oh I've just remembered I've seen a mind map for teachers about PDA - maybe on the Twinkl website? I'll try and hunt that out too

NiceCupOfTeaAndASitDown Fri 06-Nov-15 13:34:11

Here's the mind map

PolterGoose Fri 06-Nov-15 13:38:20

Message withdrawn at poster's request.

NiceCupOfTeaAndASitDown Fri 06-Nov-15 13:38:39

here and here
If you google different behaviour school ASD or PDA there are lots of people going through the same thing, perhaps something there may be helpful

PolterGoose Fri 06-Nov-15 13:40:13

Message withdrawn at poster's request.

NiceCupOfTeaAndASitDown Fri 06-Nov-15 13:43:30

Sorry Polter I thought it was. You've helped me so many times I wanted to credit you if it was. this is the one

NiceCupOfTeaAndASitDown Fri 06-Nov-15 13:44:48

There's also some stuff on the autism discussion page on Facebook but I don't have a link for that I'm afraid

PhilPhilConnors Fri 06-Nov-15 14:33:21

Thank you.
They already have the Luke Beardon document, the NAS page about different behaviours in school, the PDA mindmap, they've seen a video made by Jane Sherwin about covering up the behaviour in school, they've seen it all, but if he doesn't behave autistic, or at least tell them what he's feeling (he'll only tell us what's going on once in a blue moon and we're "safe", so why on earth is he going to tell them?) they can't do anything, as he needs to learn to tell them.
I've sent this photo too.

Sorry, I feel like one of those posters who asks for advice then says "no, done that, doesn't work".

PhilPhilConnors Fri 06-Nov-15 14:35:19

Your second link at 13:38 is a new one to me, so I'll send that on too!
Thank you smile

ChowNowBrownCow Fri 06-Nov-15 20:22:15

I am sorry to hear how your child is and how it is effecting you. Its really awful isn't it when the school tell you how everything is fine, good, happy, no problems and when as the parent you tell them otherwise they tend to get defensive and think youre making it up! I used to tell senco and ds teachers that ds was having daily meltdowns after school and they simply ignored me, with the attitude of disbelief and 'well its not happening on my watch so we're not bothered'. Homework was causing many meltdowns at home which we felt didnt warrant the stress it was causing him and us. After lots of chats with the school the Senco said 'well good luck with him in secondary then.' very helpful angry. so I filmed him after school with the clock in the background to show how soon after school he changed. He had a serious melt down. I insisted the head watched it. They honestly couldnt believe what they heard and saw. ds no longer has homework. I used the video evidence at a recent meeting with EHCP professionals just to show the happy boy they wave off home each day after school is holding it until he gets home and can release the anger and frustration in the safety of his own home. Again, they were shocked. My advice is to try and film him on your phone and then show all that need to see it. Its awful to say, but quite often they need to see it to believe it.

PhilPhilConnors Fri 06-Nov-15 22:19:52

We've filmed him, we've done voice recordings, we've written diaries - they won't accept them. They think we're setting up situations to cause meltdowns, and seeing them as evidence of poor parenting (him swearing etc) rather than evidence of him not coping.

He's had another big meltdown tonight and ended up wanting to be squashed under cushions, hoping they would kill him sad
He's refused melatonin so he's still wide awake and angry.

I sent an email to the diagnosing paed and psych, who have emailed back some advice, so I think I'm going to try yet another email to school explaining why "learning to do as he's told" isn't going to work for us.

We're trying to make things ok for him long term, not just for the 8 months he has left at this school. We know he's going to have to learn, but the way they're proposing doesn't work with him.

PolterGoose Fri 06-Nov-15 22:38:11

Message withdrawn at poster's request.

PhilPhilConnors Fri 06-Nov-15 22:48:47

I'm so pleased things are better for your ds. It must be such a relief for you and him.thanks

I'm really frustrated with things, because I don't feel I'm asking for anything impossible, or costly, just a bit of understanding and rephrasing demands.
Maybe I'm asking too much.

PolterGoose Fri 06-Nov-15 22:53:29

Message withdrawn at poster's request.

PhilPhilConnors Fri 06-Nov-15 22:56:50

I feel that that's the problem in school, ds appears so NT and eloquent, they can't understand why he can't advocate for himself, and seem to think that telling him he has to will magically make him able to. We're having the same problem with CAMHS too.

I asked the ht what happened with non verbal children, how do they advocate when they can't speak up for themselves, but it's ok because children who can't talk will show their behaviour in other ways.
So poor ds, who can't say how he feels and can't show it either will carry on feeling angry for a large part of the day because I'm not allowed to speak for him.

Mrsmoneyworries Sat 07-Nov-15 10:30:22

What a horrid situation to be in. I've been there and really feel for you.

I ended up searching for an independent behavioural type person, and she just happened to be up on PDA - massive bonus! I wanted her to watch DS in school and advise school on the actual cause of the behaviour.

Your school won't admit it, but they are seeing glimpses of his ASD-PDA - his behaviour! The only difference is, they're treating it as naughty rather than anxiety related. It's them who need to change their mindset. He has that diagnosis for a reason, and they need to remember that! Every behaviour has a reason and I think they need some training on SEN - maybe try the "I realise your in no way medically trained and are just teaching staff. However, it's been medically researched about masking and you may be able to help other children as well as mine, by getting some knowledge on this"

ChowNowBrownCow Sat 07-Nov-15 10:31:16

I'm sorry op for what's going on. It all depends whether the school listen to us parents - most often they don't!

PhilPhilConnors Sat 07-Nov-15 12:17:38

Mrs money, that's a good idea, thank you.

I've written a long letter, mostly to get this out of my head, and I'm ringing parent partnership on Monday, see if they can help at all.

DolphinsPlayground Sat 07-Nov-15 13:13:21

I feel for you . We had the same thing, down to them not accepting evidence and not believing us. We ended up home edding him although his siblings are still in the same school.

NiceCupOfTeaAndASitDown Sat 07-Nov-15 13:44:01

You're not asking too much and it doesn't matter that you've tried lots of these things already because by posting you are getting support and possibly somebody will come up with an idea you haven't tried and also threads like this will help others in the same boat. I just don't get why this is a problem for so many and yet nothing can be done. There needs to be a national campaign on 'invisible SEN' and some proper training for teachers and sencos. Our poor children. And it's so hard for us as well. I hope something from this thread helps

PhilPhilConnors Sat 07-Nov-15 13:56:47

Yes I agree there needs to be some awareness for children who look "fine".

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