Primary school auties : spring 2021 and beyond - thread 6

[danni0509]

Hi. New thread.

This is the continuation of the thread for parents / carers of autistic children / children with additional needs. Most of us are parents of children in year 1 / year 2.

Links to old threads

Thread 1 - www.mumsnet.com/Talk/special_needs/3080753-DS-with-ASD-starting-school-Sept-2018-I-am-feeling-overwhelmed

Thread 2 - www.mumsnet.com/Talk/special_needs/3451020-Reception-auties-2018-19-thread-2

Thread 3 - www.mumsnet.com/Talk/special_needs/3628263-Auties-transition-to-Year-1-thread-3

Thread 4 - www.mumsnet.com/Talk/special_needs/3748449-Primary-school-Auties-into-2020-thread-4

Thread 5 - www.mumsnet.com/Talk/special_needs/3953023-Primary-school-auties-summer-and-beyond-thread-5?pg=1

Everyone welcome x

He blocked the toilets up every time he went to the toilet & tried to break the class lap top, then demanded all the other children leave the class and got really stressed so he had to be taken out and he calmed down playing trains with the class teacher then when they tried him back in the class it all went to pot again and rinse and repeat.

I just feel like shit and worry they won’t keep him.

Oh danni that sounds tough. It's a huge change for him and hopefully he will settle in soon once he gets a bit more familiar with it all.

Does he already have an adhd diagnosis?

Liv he doesn’t have a formal diagnosis yet, they can’t refer for formal diagnosis for medication until 6 so they did that last March 2 months after he turned 6 and he’s only been seen March / April / May this year because of covid and waiting lists, the child phycologist has done 2 home ‘virtual’ visits. 2 video calls with his old school and 1 school visit to observe ds in the last 3 months.

She is having a multidisciplinary team assessment for him Tuesday 1st June to discuss the findings and decide upon a diagnosis and will phone me after that to arrange a clinic appointment to discuss medication. I’m a million percent sure he’ll get a diagnosis it’s just going through the protocols.

But yes I’m going to medicate i wasn’t so sure but what do we have to lose. Ds behaviour is just getting worse and worse x

Poor DS and that can't have been easy to hear. In a way though it must be very distressing for him being in a room with all those children when he is used to having a single adult in his own space (and usually outside by the sound of it?) It's really a failing of his previous school not giving him any exposure at all to a classroom environment, so not surprising it is hard for him to adjust. Hopefully given it's a small school and a calm environment he will in fact settle in.

How do you feel about medication? Would you give it a go assuming he gets diagnosis? Sounds like that might actually not be far away? A friend of mine has ADHD and said the medication was life changing for her (in a positive way!) but I know it's different for everybody and it must be different for children.

I totally agree light. His old school have royally fucked him. He’s been sheltered from everything and it makes me really sad what they’ve done they’ve only made their own lives easier.

Ds is saying he doesn’t like his new school and he doesn’t want to go tomorrow so I’m going to be in for some fun and games over the next few days / weeks getting him there.

I’m worried about adhd medication because of the fact he needs to see a cardiologist every 3 months as it increases heart rate and blood pressure but other than that worry I’m definitely going to try it. His class teacher said today if he could diagnose a child with adhd he would of rubber stamped it today, he’d only known ds 3 hours.

He also said ds class are mixed age 7-9 year olds and most have been with the school since age 4 so have lost the toddler type behaviours and are a lot further on developmentally than ds, that was hard to hear.

Oh Danni and Liv so sorry to read about your difficult days.

Danni it's such a big change for your boy isn't it. Hope that tomorrow is a better day.

Thank you.

Ds been awake since 1, doesn’t look like he’s going back to sleep at all 😴

liv I hope things go smoothly today. Ds also seems to get headaches when he has teeth on the move.

danni it’s such a big change for him he’s bound to act up. The testing boundaries is all about him working out his new environment and expected I would have thought. Things are bound to settle once the new routine is more familiar.

My friend’s dd has 1:1 in special school so it does happen. He may only need it during the settling in phase.

Try not to be disheartened, hopefully this is just things getting worse before they get better

That’s it, I fully expected him to play up anyway and that just what he’s like as standard then throw the biggest life change in for an autistic child!

The headteacher has read his ehcp and thought yep sounds fine can meet needs. But they are not aware when they read he is impulsive or has no danger awareness and needs constant supervision what it means for ds, they know he has these needs as it’s documented but not what these things entail for ds and what behaviours it comes with and now they are seeing.

I’m not really sure what they were expecting to be honest. The more I think about it the more I’m getting annoyed. He’s going for a reason grrrr.

He can do the reduced hours I’m not moaning about that. I was taking him / picking him for the fortnight anyway which is fine, then 7th June the transport will have to do the reduced hours, I’ve emailed the transport manager and it’s basically tough they will have to sort something! It wasn’t the deal I took him full time and I’m not. They placed him in an out of borough school!

Ds stayed awake from 1 so I dread to think how this morning will go.

I’m also dreading his teacher phoning, he phones everyday for 5 minutes feedback. I just hope things are more positive.

Oh @danni0509 that is tough but I would have thought the school should expect it, such a big change for an autistic child is bound to cause behaviour etc as behaviour is communication. DS started acting up again at the weekend and so I said what is the matter then I realised DH and I had been talking about these houses and had gone for a short drive to look at them. I said tovDS is this about the houses abd it turns out he thought we were moving there that day and had got himself into a right state about it! Hence the behaviour!
With the teacher phoning, I understand and recognise the dread, but can you take back control to help with the anxiety? So when he calls, ask him what measures have been put in place that day to help DS settle, were they effective, why or why not, what therapies are coming up etc. They don't really need to worry you with the ins and outs of the challenging behaviour, they should be talking with you about how to help him feel safe and secure there so as to minimise those behaviours.
@openupmyeagereyes DS' top teeth have been wobbling for ages but still not out. He goes through periods of wobbly teeth and most times he gets teething symptoms with it.

I would steel yourself for it not being positive today and then hopefully soon you’ll be pleasantly surprised - expect the worst, hope for the best. Did you find anywhere nice to have a coffee yesterday?

I always expect ds to have an awful day when he’s been up all night but most of the time he’s perfectly fine. Last time I got a note in his comms book ‘he was no more tired than usual’

Good luck getting him in today danni.

Ds practically skipped onto the bus this morning, which is a huge relief!

Thanks open it's good to know that it causes headaches. Obviously not for your ds but that he can articulate that to you.

Magrat yeah it's so difficult to express when things are happening to our kids. I can only tell ds things just before they happen or he gets too anxious about it.

Fab that DS went in happily this morning @livpotter!

Good luck today @danni0509. I think everybody is right: it's a huge adjustment and he'll probably be fine when he settles but that is bound to take some time. It might be worth exploring whether they could find a 1:1 just for his transition phase while he gets used to a classroom. It would be worth emphasising to the school that he has basically never been in a classroom environment before, so it's to be expected that it's a difficult adjustment for him. They may not realise just how little his previous school actually did for him.

liv you must have let out a big breath after that.

Ds has gone to school with no cajoling the last two mornings. I’m sure it won’t last.

Light I told his new old if they carry on school a few times he’s never been in the classroom and about the set up. I reiterated it again yesterday when he phoned me, I’ve told the head about it once before when she phoned me.

His teacher bought ds out today at half 12 with another staff member, I said how’s he been and they both just gave me an awkward laugh and he said I’ll phone you between 3/4pm again.

They wouldnt tell me anything and by the laugh they did i know it’s not good.

What’s the fucking point in acting like your 5 years old laughing and not telling me anything?

Just say not so good but we will talk later or yeah fine talk later.

Just makes me worry all afternoon.

Honestly I'm disliking this school more than the last.

Pleased he went on the bus liv and open hope ds continues to go with no issues x

That’s a bit unprofessional danni, they could have just given you a heads up as you said. On the plus side he came out calmly.

Basically 30 min chat in a nutshell.

Ds bit a member of staff on her boob today because he was in the nappy bin pulling nappies out so she stopped him and he grabbed her and bit her ffs.

Ripped all the work & children’s individual timetables off the wall, climbed on all the tables jumping up and down so they were rocking side to side & they couldn’t get him off the tables, he found a random hot chocolate sachet in a cupboard in the classroom and ripped it open and poured the powder all into his mouth then was spitting hot chocolate powder / spit at everyone, kept telling his teacher he was going to smash his car up etc.

So basically his teacher said he’s not getting a rise from any of us and he doesn’t like it, so his teacher hopes that by keeping on ignoring his bad behaviour he will get bored, then every time ds does something good (he played a problem solving game on the lap top for a few minutes nicely) so his teacher took him outside for a 5 minutes chasing game.

He’s not in the classroom but is drip feeding in every half an hour for 5 or 10 minutes until they can build him up to full time but he said it will take months.

He said ds needs to unlearn every single behaviour he’s learnt in a mainstream school and start again and this will also take a long time. He’s been controlling all the staff at his old school running the roost and he can’t do that here so he doesn’t like it.

He said he’s not learning anything now and he won’t be for a while he needs ds to feel secure, settled & trust everyone and calm down before he can learn.

Fine by me. I’ll leave it to them.

It does make perfect sense.

danni how do you feel? You probably didn’t expect things to be this extreme. How has ds been since he got home?

Open he was up and down when I got him home trying to pour a bottle of water on my mattress / chucking stuff in my bedroom etc then I put him in the bath after his tea and he kept putting the taps on and slamming the shower screen to break it off as he said. It’s not anything out of the ordinary with him as he often does stuff like that but it’s been more frequent iyswim.

But after his bath he had his melatonin and bought 2 aeroplanes downstairs and sat really quietly on the sofa watching quatar on YouTube on the tv then he looked exhausted so I took him up at 6.30 and he was fast asleep by 6.50. Not heard anything since, bless him x

I’m feeling a bit shit about it all open. I knew it wouldn’t be plain sailing and I did think he would be like this to some degree as he behaves the same for everyone.

I just didn’t think the teacher would be phoning me for half an hour a day with a list of issues. Not sure what I was expecting but I don’t think it was this.

Danni that's so tough. Hope that you can get some rest tonight too. Good that school is keeping you informed but that must be rather overwhelming. Take care.

Thanks dimples x

I'm sorry danni that sounds like a hard day. The positive though is that the new school seem like they want to help make ds progress. Annoying that they weren't that helpful at pickup but maybe they didn't want to upset ds by rehashing it in front of him?

Hopefully he has a good sleep tonight and has a better day tomorrow

Open I definitely did! Brilliant that your ds went in well the last two days. Finger's crossed for the rest of the week!