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

I swear, ds drops an hour of sleep every other year. When he was two and he dropped his lovely two hour nap he didn’t start sleeping longer at night. Since then bedtime has gradually got later and waking up time earlier…

Open, to answer your questions yes they are smaller class sizes. But the option 1 one just worries me that it’s a primary speech need… they say children can have other needs but speech should be the driver. I do think sensory is a big player because he doesn’t behave at home like this… the head was making out he physically cannot be distracted from a water tray whereas we have the paddling pools out at the mo cos of the heat and yeah, he’s a bit interested but I can’t say overly so. School say he won’t engage with anyone whereas for eg we had someone see him from the aac nhs salt dept a couple of weeks ago and her parting shot was as she left how amazing his engagement and eye contact was. So I can only say it must be the surrounds…???? To some degree.

Danni is your DS’s behaviour at school consistent with at home? Things like the cables example and so on? I know near us as I’ve mentioned this before that there are schools who really focus on taking children with challenging behaviour and have really good success stories. You still too might be really surprised if he takes adhd meds… some people on here say it was a game changer…

Yes Carrie what you see with ds is what you get wherever he is, his school where suprised and said they expected him to be tamer as they usually are in their natural environment but when they did the zooms and see him hitting me in the face and trashing my house they phoned afterwards and said they thought he would be calmer at home as they usually find children are.

No idea what they mean by that but he’s no calmer at home.

Yes I’m literally praying medications works for him because I just don’t know what else I can do anymore.

It’s got to surely. That’s what it’s designed for. X

Open I can remember when ds was a toddler like 18 months, I used to take him up for his nap at 12 and like clock work get him at 2pm. He was always hard work then like hyper and into everything, he got banned from baby group around the same age for example and it wasn’t long after he got referred for development delays so the issues where there already BUT he used to sleep!

Good god it feels like such a lifetime away.

Do you use melatonin danni or do you find it doesn’t work? Sorry I can’t remember what you said

Yes he’s on 5mg a night and no it’s useless.

It used to simmer him down, not make him sleepy as such but just knock down his hyperness a gear or two but it’s just not effective anymore. He’s been on it 2 years he was on 2mg, then 3mg then 4 now 5.

I need to speak to his consultant again about other options. If there are any!

danni have you tried giving him a break for a while and then seeing if it’s effective again?

I haven’t open not recently, the last time he had a break was about 18 months ago when we went to turkey for a week.

We are going away during the summer holidays to York for a few days I don’t usually take medication with us so I’ll give it a break then.

It might need longer than a few days but I don’t really know.

Is it slow release danni?? Does he take it without crunching etc etc…?? Apparently (so they say) children can get used to melatonin then it’s less effective. But I really don’t know.

Where are our summer hols if we are going on any? Danni, York will be fab. Just down the road so PM me if you need any tips! If you also feel like escaping PM me and I’ll see you for cocktails…

We are heading to Devon in aug. Our usual haunt.

Fingers crossed for a better night. Tbf it’s sooo hot!!

And thank you again to everyone for being so kind! I feel like you are the only people on my side at the moment! X

Danni I also sympathise re the tv. The number of programmes I miss that I want to watch is huge. I never watch them on catch up or if I try to watch when the kids are about guaranteed there’s a tirade of 4 letter words, DH dives for the remote. I don’t get these people who have millions of channels on their TV package, plus films etc etc. I can’t even watch what I want on bog standard 5 channels!

So much messing around at bedtime tonight. Went to sleep about 9 in the end. So tired of it all, every night is such a battle. Argh.

Sorry to read of some of your sleep woes. I am grateful that I normally get a couple of child-free hours in the evening. I know how much I need that time so I don't know how you manage without that respite.

Carrie what an appalling headteacher. I hope that you can make some head way with the LA this week. I currently work 3 days a week but over 4 - that lets me have one day off with DD, I can take DS to school every day and collect him 3/5 days. I would love to work less but I am a sole parent and I can't afford to.

Open I don't have the report yet. Our next appointment for an assessment to feed into the report is not til 21st September so I don't know if I have to wait until after that. I'm hoping that they'll maybe issue an interim report.

@carriebradshawwithlessshoes I'm sorry about that meeting - it sounds horrible. I can't believe they did that in front of the LA person too! And to flat out say they've been lying to you about positives? I mean, if they're a bunch of liars who say whatever feels convenient in the moment, how do you know they're not lying now too? And how did they feel they were benefitting you or anybody by lying before?

Really hope the LA can be helpful or you can get some support from SENDIASS/SOSEN to kick bums until something else gets sorted out.

Well ds went into school for an hour today. I am thrilled but won't hold my breath for tomorrow. We got his year end report and he got expected standard in reading which is great. Everything else was working towards, but he made better than expected progress in reading and maths 'number'. So far a good day!

That sounds really good! Especially in this heat. Well done DS (and on the report)!

What great news re your DS's reading, Open

That’s fab Open, how brilliant! X

Thanks. It’s the one thing we’ve been able to be consistent with during everything. We’ve gone from him refusing to do any phonics work at home during his reception year to idk, months and months of him sounding out every single word to meeting ARE. We have always read loads to him, they say that’s the most important thing don’t they.

But he did fail his phonics screening this year.

Open, unfortunately DS is going the other way in Reception and Yr1 he was meeting but now working towards. He is stronger in reading than maths and writing where he is still working towards YR1. DS failed phonics screening, by 2 marks. They said that they would re-test in the summer term but I haven't heard anything about that so I suppose that they didn't ...

dimples in reception I'm sure ds was ARE in ICT, one of the maths elements and something else. Last year I think it was all working towards but hard to assess I suppose because of lockdown. They will have their own trajectory.

Ds went into school for an hour again today. He was not as keen as yesterday but had fun apparently, they were just outside playing games. Two more days to go...

Well done to ds open that’s fab that he’d got better than expecting especially with the Rocky school year you’ve had x

Ds hasn’t been age related in anything, ever. It’s really disappointing.

Just before he left old school in may I had a parents evening call and I asked where she thought he was and she said a mish mash of reception / year 1 / early year 2 depending on what it is. I would say it’s only a rough estimation though. He was adding hundreds yesterday, 500+275 etc how that can be any less than an early year 2 I’ll never know..

He didn’t get any levels on the report I got last week from new school (it was only 3 lines to say he was happy, active & very inquisitive and asks lots of questions) but then he hasn’t been there long so fair enough. I would of taken their levels with a massive pinch of salt though since they didn’t even know he could read until I told them so 🙄

Ds breaks up today. He’ll be home in an hour and a half for 7 weeks 😂

Ds didn’t do his phonics screening, the old school didn’t enter him and didn’t tell me either. I asked why he hadn’t done it and got some shit about his attention span / unable to co operate etc.