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Primary school auties: summer and beyond - thread 5

999 replies

openupmyeagereyes · 29/06/2020 11:18

This is the continuation of the thread for parents and carers of autistic children in Early Years and KS1. Most of us are parents of children in Reception or Year 1, but all welcome!

Here are the links to the previous 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

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5
openupmyeagereyes · 13/11/2020 11:56

danni and what are these ‘new techniques’ when she’s given them the same ideas they’ve already tried? I’m not sure what her motive is, maybe the assumption is that most parents prefer mainstream (I’m not saying that’s true) or maybe it’s just that SS places are limited and they try to fob/put off parents as a first course of action.

I think you should stand your ground, school are on your side (because it makes their life easier). Your key arguments include:

he is not integrating at all with his peers. School do not seem to be facilitating this at all. Because of this his social skills get no chance to improve.
he is developmentally behind his peers.
he is not accessing the curriculum (at all?).
the school say they can’t cope and he often needs 2:1 whereas SS said they could see potential in him.
he is on a reduced timetable with no pathway back to full time despite EHCP funding.
he clearly has sensory needs which would be better met in a SS with specialist facilities.

I’m sure there are many more.

I’m sorry all this is so hard. I hope that this time next year it will all be a distant memory.

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LottieBalloo · 13/11/2020 12:22

Flowers and Cake @danni0509
As @openupmyeagereyes has said, I'm finding it hard to see the EP's true motives too. Perhaps it is the assumption that most parents want MS. I certainly don't now for DS, looking at how much he is struggling with it, and now he's in a separate space mist of the time working on activities with his 1:1, which is upsetting him as he wants to be like all the other kids...but it's the only way school can manage him as he gets overwhelmed in the classroom which leads to challenging behaviours...I'm going to push for the special school that we want too, senco is behind us as the best long term choice for DS, but it's the LA hurdle.
The argument about having access to NT peers kinds of falls down when our kids are being segregated at MS anyway because they are so baffled by NT kids and don't know how to.interact. special schools teach those skills explicitly. That's probably why places are so sought after (and they have smaller classes so fewer places from the start etc). Got DS' class photo today and he looks so cross and uncomfortable bless him. You can make all the adjustments in the world in MS but they just aren't resourced or experienced enough to give children with complex needs the right type of educational and school experience. Fingers crossed for you for Tuesday danni.

openupmyeagereyes · 13/11/2020 12:34

When I say he’s not accessing the curriculum I mean because they are just letting him play. I’m sure it’s not the same approach as in reception class where they are playing and learning.

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danni0509 · 13/11/2020 13:01

He doesn’t access the curriculum open no, he’s not on national curriculum in any areas, he’s on p scales so his is all still learning through play like in reception, his class are all bums on seats doing loads of interactive whiteboard work and following the curriculum whilst he’s still outside chalking letters on the floor and painting etc which he’s been doing for 3 years now.

I’ve picked him up today and they bought him out 7 minutes early, I got there early (they don’t know I’m early though as they wouldn’t know from his classroom area it’s at the back of the school, so didn’t just see me and say oh ds let’s go mummy’s here kind of thing) id been to the shop next to the school so left the house a few minutes earlier so when I got to the office door they had him already waiting in his coat nearly 10 mins before his time. Not unusual but since he’s only there a short amount of time I thought they would maybe maximise the time spent learning. Arghhh

danni0509 · 13/11/2020 13:02

I’ve bought a cadbury cake mix so we are doing that this afternoon and I forgot eggs! So need to take him to lidl now to get eggs which will be fun, he’s helping me put the decorations on the tree tomorrow so he’s excited about that.

LottieBalloo · 13/11/2020 13:17

Hope you have a lovely afternoon @danni0509 I think it's so hard sometimes when everything is hard but I'm trying to focus on positives. I hope you and your DS make some lovely memories with the baking and tree decs and that you can forget about school stuff and everything for a couple of days x

danni0509 · 13/11/2020 13:24

The Ep seems to not want kids going to the SS and I’m getting the feeling she’s fobbing me off / delaying the inevitable bcos she told me before there were over 80 children waiting to be admitted at the moment and the la must decide who needs the places that become available, they base it on needs and they look into which children are already out of school etc and I think I mentioned on here before that I was told some kids have already been waiting up to a year, anyway I know what I was told is a load of shit.

I couldn’t care less how long some have been out of school just like their parents won’t care about my ds. I’ve only got 1 priority and that’s my own child.

So I think that the la are thinking (they did offer ds school an additional £2000 in October which the senco said isn’t what they were asking for) we will give some more money and maybe offer some more pointless shit and that will keep him were he is.

School don’t want that and nor do I.

It doesn’t solve anything, what’s £2000 going to achieve! He’s already having 2-1 so even if they used the additional money towards support staff wages it’s not going to work as he has that already, school have paid for specialist teaching service to visit and her recommendations didn’t work out, it doesn’t solve anything as he shouldn’t be in mainstream,
So the la can go around and around in circles all they want.

danni0509 · 13/11/2020 13:25

Thanks Lottie x

danni0509 · 13/11/2020 13:32

Last message and I promise I’ll stop Grin

Ds hasn’t met any of his ehcp targets ever, they were carried forwards last year and still not met this year so he’s got the exact same ehcp targets on his ehcp as he had when he got his plan age 4, he’s 7 in a few weeks. They aren’t very stretching either they are really basic.

So if that’s not enough evidence just that one point without me mentioning everything else then I don’t know what is.

Anyway he will be going to special school, I’m not worrying about it much more as there’s too much evidence for him not too.

openupmyeagereyes · 13/11/2020 13:34

It sounds like they need to open an additional school if they have so many on the waiting list.

I hope you have a lovely weekend with these fun activities and forget about school for a bit. Good luck in Lidl.

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openupmyeagereyes · 13/11/2020 13:40

We have had a good week. Ds has been doing 8:45-12:45 since the holiday. Next week we’re going to try extending it an hour after lunch.

He’s still waking at 4am. Last night I set my alarm for 3:30 to go and do a ‘scheduled arousal’ (wake to sleep) and he still woke at 3:55. The sleep lady said to keep at it.

He’s been much more settled the last couple of weeks with no big meltdowns. He also seems to have a back tooth cutting through though he has not lost any teeth yet.

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danni0509 · 16/11/2020 11:34

Ds got referred for adhd assessment 9th March (child has to be 6 here before you can be referred for adhd) Even though every consultant he’s seen has wrote adhd on his paperwork and the consultant neurologist he see about 18 months ago wrote severe adhd on his report, it still has to go through the proper channels for diagnosis.

Today November 6th I’ve had a letter to say he’s been accepted to the waiting list to be discussed at a panel (panel here, panel there, our LA have a lot of panels don’t they) and they work through the list and when it’s ds time they will be in touch (they then visit school and home and the child visits the clinic)

Ridiculous, 8 months just to be acknowledged and added to another list and god only knows how much longer for an assessment and diagnosis.

Wouldn’t be bothered but his consultant threw a diagnosis at him for autism when he was 3 (thats unheard of here, no professional persons believes me when I say he was diagnosed at 3!) then the diagnosis i actually need (for the medication to chill his boots) takes 15 years Grin Least the adhd part you can medicate.

School ‘forgot’ to get ds this morning, 15 minutes late they came out, I had to knock on all the class windows and phone the office. I was not happy when his teacher came out, ds was running off from me being a complete pain in the arse he was running around a picnic table when I went one way he went the other so when I went the other he went the other way I just dived over the bench to grab him in the end, it was freezing cold to top it off and schools excuse was the dinner lady had an emergency and she was supposed to let someone else know to collect him but didn’t, I said not good enough, kissed ds and walked off.

EP phoned me and she’s sent ds senco a sensory processing questionnaire this morning so the EP is going to try get an OT to go into school.

danni0509 · 16/11/2020 11:37

Just read your last post open, must’ve missed it.

Hope the extra hour at school goes ok and he’s settled.

Ds has a couple of big back ones through and a couple are half out. He’s lost 4 now the front 4 and has 4 adult ones what I can only describe as grave stones making there way in. He doesn’t have enough room in his mouth and looks ridiculous Grin

danni0509 · 16/11/2020 11:40

The OT thing, I’m aware I sound like I’m never satisfied probably won’t help, we do loads of sensory things at home and school focus more on the sensory side than the education side! But if it’s free, why not. But I doubt it will change much.

openupmyeagereyes · 16/11/2020 14:38

danni the OT’s don’t deal with sensory issues here, they do parental talks. Take whatever you can get from them.

What a pain the school kept you waiting today. On top of everything else!

Ds had a good day at school though we nearly missed our drop off time as he was difficult when we arrived.

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LottieBalloo · 16/11/2020 17:09

Glad your DS is doing ok at school @openupmyeagereyes and well done for keeping going with the sleep ideas. DS woke up at 2.30am this morning do I took him back to his bed and settled him for a bit, but he was tossing and turning bless him. Then he was back in our bed by 6.15! And I still never learn and go to bed earlier!
How annoying about the adhd assessment @danni0509 I guess at least hes on a waiting list now but still. Six is the earliest they'll assess for adhd where I am too, overlooked because DS fits the profile at times, although mostly his impulsiveness comes from a reaction to anxiety we think,so it's really hard to unpick the causes. An OT observed DS in school and sent us a sensory questionnaire to fill out. It was quite interesting because some of the questions on it were things I hadn't even thought about as being not neurotypical, like leaning on things more or always playing with stuff on the floor with his feet or not being aware when someone comes in a room while also being scared of hand dryers. I think the idea us that the OT will try to determine some root causes and whether motor skills are tied up with sensory issues. Good luck with it all. My DS scored higher that most across the board, which really highlighted for me how just processing the world when overwhelmed with sensory stuff must be so hard for him.

LottieBalloo · 16/11/2020 17:10

Oh and also rubbish of school not to get DS ready @danni0509

LightTripper · 17/11/2020 00:23

Hello everyone! It's about a month since I've been on, so loads to catch up on!

Is it your panel tomorrow @danni0509? Will be thinking of you and keeping everything crossed. As you say the situation is completely untenable, it's crazy if he doesn't get special school. If somebody who is being failed as badly as your DS isn't a priority then they clearly need a LOT more special school places. Glad you've got the SENDIASS lady and your SENCO on your side.

I agree the Early Bird + is super-basic. The idea that should make any difference is crazy. The only thing I liked about it was that DD's TA came along with us, and it was great to hear stuff from him first hand (as obviously normally you never get that much time to talk to TAs and find out how your DC are day-to-day at school, and also so he could understand things she had found tricky in the past, or at home). So that part was great, and it was nice to meet other parents - but in the end as you say everyone has such a different experience it's not that helpful. The main thing though as you say is that the content is so basic it's pretty pointless if you've been waiting 2+ years for it. I think we did it 2 years post-diagnosis, so 3 years after we were first told she was autistic, and 4+ years after she was first referred to paediatrics. I had read and watched hundreds of hours of information by then (probably thousands, I was pretty obsessed!) so the course content was generally not very interesting (and in some places wrong/insulting: though I think they are supposed to be updating it to remove the more offensive stuff and luckily our trainer was good and managed to take out/talk around most of the dodgy bits). I really think they need a shorter course that they give to parents within a couple of months of diagnosis (or even pre-diagnosis actually). That could actually make a big difference.

You asked about the poo-holding thing. DD was on Laxido for ages (maybe a couple of years: from about 3.5 until she was 5.5 maybe). I think the problem is once it's a problem it takes a long time to unwind, so you just have to be patient and keep going. What worked for us was:
(a) Laxido and keep going with it: even if things seem stable don't start experimenting with lower doses until you are really sure and even then just reduce little by little. We ended up on sachets then half sachets then teaspoons, then half teaspoons - if we faded it out more suddenly she always got bunged up again. It's just a whole horrible feedback loop between sensory sensitivity and then anxiety I think, so as soon as it gets even a little bit uncomfortable they kind of panic and can't let it out, and the whole cycle starts again. So you just need to keep everything soft for a looooonnnngggg time - long enough that he's actually forgotten to be stressed about it.
(b) Put lots of fibre in his diet if you can: we do whole wheat everything now (bread, pasta, rice - whatever can be wholemeal is plus as many veg as we can persuade her to eat!) She still has a tendency to get a bit bunged up when we're on holiday and food options change, for example, so we always end up packing weetabix and shreddies and dried apricots and stuff whenever we are away from home.
(c) Absolutely no pressure. We tried reward charts and cajoling and "let's just sit on the toilet until it comes" at the start and I think it made it much worse. Even when we had huge accidents we'd just say oh dear, that's a shame, come on, let's go and have a shower. We did give her praise if she told us she needed the loo, but that was it: praise for communication, regardless of whether she soiled herself or not as that was totally out of her control, but it took a while for us to realise that.

I will see if she even really remembers it and has any more thoughts. It seemed to last forever but we have very few accidents now and she's probably been off Laxido for a year or so now. I do know people whose kids were on it until much older (11 in one case!) with no ill effects, so no rush to get off it if it's working. DD liked the sound effects on Mr Poo goes to Pooland but I don't think it made any difference to her ability to let it out in practice!

@dimples76 I'm glad DS's teacher thought better of the glib response: were the new materials any good?

@openupmyeagereyes, glad DS had a good week and hope the extra hour goes well. DD hasn't lost any of her baby teeth yet either.

@LottieBalloo the special school sounds great! Really hope you can get the EHCP sorted as that sounds like a good solution medium term.

We are all good here. Not too much to report. DD like many of our DC won't do the flu spray at school so I've booked her and DS to have it at the GPs in the next couple of weeks (and DS also needs his pre-school jabs ... we were watching about jabs on Operation Ouch today and it was a great opportunity to put his mind at rest, I thought I was doing really well and then DD said "It's going to really hurt you know" and I was like "err... thanks for undoing all my good work" Hmm Grin. Anyway, we'll get through it Grin. Also got DS's first "school" photo from nursery. Such a weird feeling as DD has never agreed to be in one (if anything she's getting more anti-photo as she gets older). One downside of NT children: school photos are bloody expensive! Anyway, I suppose we ought to get one but we can't really put it out anywhere as we won't have an equivalent of DD. But I think I will get one and just put it in an album for when he's older (though there are so many photos of our kids these days, I wonder if they'll have any interest at all?!)

LightTripper · 17/11/2020 00:23

God sorry, that was a marathon! I will try to post more often and less long Grin

dimples76 · 17/11/2020 10:12

Great to hear from you again Light. Hope that the longer days are working well Open. Danni I have all my fingers and toes crossed for you. Good luck Lottie.

It's a good week here as our isolation is over. Yesterday DS returned to school. There was a hearing yesterday for DD's adoption and it went our way. It's not over yet but I think it's just a matter of time now. Hopefully I will be able to sleep again.

Unfortunately DS seems unsettled and screamed at me most of the way to school today. He wanted to wear the gloves that he left at school yesterday. He kept changing his mind about which way to walk to school. Everyone was staring at us - I don't care for my part but I worry about some of DS's potential friendships at school.

I need to contact school now as they haven't given me a parents evening appointment. Last week all his non-SEN classmates had theirs and they had said his would be this week. 5 mins for non-SEN, 10 mins for SEN! Don't see why SEN should be last (and now forgotten about)Angry. One good thing that came out of isolation was more communication with class teacher and 1:1.

danni0509 · 17/11/2020 15:57

I haven’t heard a bloody thing. I have emailed the senco at 3pm and she said she emailed them about 2 o clock to find out and hasn’t heard back but would email me as soon as she has. I phoned the review team myself but got no answer it rang and said to leave a message (it did that once before) so I’m not even sure if anyone picks up the phone.

It’s not like the the parents are sat waiting patiently or anything is it!

They’ll probably expect me to wait for the letter in the post which will arrive when he’s in yr4 Grin

LightTripper · 17/11/2020 17:33

Gaaargghhh how annoying! Really hope you hear today or at very latest tomorrow.... We're all on tenterhooks for you!

openupmyeagereyes · 17/11/2020 17:42

Waiting here too... Halloween Angry

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openupmyeagereyes · 18/11/2020 05:16

dimples I’m so glad the hearing went well, it must be such a relief. Is it likely to be over by Christmas?

Light good to hear from you, I’m glad the dc are well. Luckily ds has always sat for his school photo and they’ve been lovely but this years is quite funny as he has the most bored expression on his face. We bought it anyway but I’m hoping next years will be better.

danni I hope you get an answer today and that it wasn’t postponed. Fingers crossed for you.

We have parents evening this week too, 10 mins for all. Last year I organised a more detailed catch up session with the teacher and SENco but with everything that’s happened I didn’t do that this year. I think I’ll try and arrange one before the end of term when hopefully he’ll be back to full time. This year there has been much more communication from the teacher (via class email which they didn’t have pre-COVID) which makes a huge difference anyway. We got the mini report and of course he’s not hitting year 2 targets for anything which is expected but still stings a bit. Still, he’s making good progress with his reading which I am really pleased with.

It’s early days on the extra hour, I’m hoping he’ll have a good week but I think we should wait another week to increase it any more. He’s still waking at 4am which is very tiring even with dh and I taking turns to get up with him. I started doing 16:8 intermittent fasting a week ago and it’s hard work being awake so early and not eating until 10am! I’m currently drinking black coffee.

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LottieBalloo · 18/11/2020 07:39

Oof @openupmyeagereyes! Drink all the coffee!
We organised a zoom catch up with senco and teacher, would they be up for that?