Primary school auties: summer and beyond - thread 5

[openupmyeagereyes]

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

@Mumofsend, I agree with you, and it's why after 7 years together, I'm going to call time. We had a Zoom call organised for 9am with one of DDs specialists a few weeks ago, and he missed it because he couldn't be bothered getting out of bed on time!

While DD needs a lot of support, I don't think I'll have to give up work, as I'm planning on buying a new house within about the same sort of distance to my parents, so they should still be able to help us out, plus I'll buy in extra where needed.

I've finally taken a deep breath and decided I am going to walk away and do it on my own, and expect nothing from him.

@Mumofsend How old are your DD and DS now? Are they in mainstream or in special schools? How are they finding it?

@itsovernowthen it was the most weight removing thing I've done. Terrifying at the time but I absolutely don't regret it.

That's great you have help local too. You will settle in to your new normal very quickly. I hope it goes well (not sure that is the right word!).

@itsovernowthen DD is a few weeks off 6 and just about hanging on in mainstream. She desperately needs specialist and is only doing 2 hours a day in school.

DS is a new 4 and I'm just starting his EHCP request. He should be fine in mainstream but I think he will need quite a high level of support to manage.

Hope ds has had a better week open. Does he have half term at the end of the week?

I'm sorry Lottie. Did they officially exclude him? I'm sorry he and you are having such a tough time. I hope that today goes better.

Itsnotover I felt the same way with ds when looking for schools. He suddenly makes great leaps in developments so I was unsure where he was best suited. I was also worried that going to special school would hinder him as I know that he's a very bright little boy. I must say now that having a curriculum which focuses more on social emotional and physical development is really suiting him. He actually wants to go into school now. At mainstream he was so stressed in the environment it's a wonder he learnt anything really.
I'm sorry you're having a stressful time with 'd'h, it sounds like you've made the right decision.

My dh is very supportive of me but he had very little to do with any of ds's 'admin' mainly because he's rubbish at forms and tends to focus on details and not the bigger picture. I was self employed and after a year or so I gave up working because it was too stressful going to all the appointments/meetings/doing paperwork. Like mumofsend I'm now doing a remote learning degree in the hopes that I can get myself back into work once everything is more settled with the kids. I also do some volunteering.

Mumofsend I'm sorry the school are being so unhelpful. Have you managed to find any more schools that might suit your dd?

Hope everyone else is ok. We're on half term from Friday. Can't believe how quickly this half term has gone!

Thanks @livpotter no they said they would if I didn't come and pick up. He was totally out of control when I got there, to be fair,beside himself. He really tried today but had to have 1:1 for a lot of the afternoon apparently due to not much self regulation. Apparently he was having no sensory or 1:1 in the afternoons lately due to staffing...so lots of things are becoming clearer!! DH and I are starting to think about special schools because we just don't know if he'll cope as he moves up through the school. He only has to read a book about cops and robbers to set him off for weeks on a thing of going hyper to stop people helping him because he's acting out the story. We do so much to distinguish clearly between what is real and what is not, we had a nightmare over Supertato, I had to put the book away in the end! How did you go about transferring your DS to special school? As far as I can see, it all has to fall apart at MS first, which seems so grossly unfair on everyone. Hopefully we will hear about the EHCP soon.

A school that teaches self regulation, social skills, anger control sounds perfect! My DS can count to 100, read, knows all the capital cities, but the emotional side is a different story and it's so hard for him in mainstream I think, he often complains of too much noise and he doesn't understand the other children (not language but just how they act). Le sigh!

That sounds difficult Lottie but not surprising he's behaviour is all over the place if he's lacking the right support.
With ds at the end of reception we had his annual review and the SENCO thought he wouldn't cope with year 1, I asked if he could repeat reception to give him a bit more time and they agreed. So he did two years in mainstream reception but by the end of the second year (last year) it was pretty clear he was still struggling. It wasn't a total breakdown at all, they just knew that he wouldn't be able to cope if he moved to a different year and he was finding it hard to hold it together.
As my LA hadn't ever legally finished the annual review (almost a year later!) i forced them to finish it by requesting a school move. Basically I made myself very annoying by emailing them once a week and quoting the law at them! Eventually they agreed to consult with the school I wanted and then it all went through pretty quickly. He was supposed to move at half-term in the summer term but we had to delay because of Covid.
To be honest if they are asking you to pick him up they should be making it an official exclusion and giving you paperwork. If he is being officially excluded then you have more grounds to show that he needs alternative provision.
If he has an EHCP you can call for an emergency review at any time if you feel the placement isn't working.

Lottie sounds difficult. Remind me, does ds have an EHCP? I don’t think you can access a special school without one.

I know, I think the thing about me picking him up was based on the idea of him coming down with something. But also yep, parent picks up, then they can get on with their day, which is not fair on DS. I made it clear to the teacher and senco that when he got home he said about getting out of school just like afterschool club (by using my silly behaviour mummy) so they know he was testing what would happen. I think he needs proper support to avoid him getting into that state but also sending him home just makes him feel like he's won. Argh. We need the EHCP so that he can get his extra 1:1 funding as at the moment I don't think he's getting enough. Poor love. Thanks for sharing your experiences @livpotter that's really helpful.

itsovernowthen I don’t work so I can’t answer your question on how people manage to do it all. I know that I absolutely would not be able to do the job I did before I had ds, even without the long commute.

I hope that I can work part time at some point but with all the uncertainty about school attendance it’s not possible right now.

Oh, I do volunteer too but it’s school related and not many hours.

liv yes we have half term next week. I’m looking forward to it tbh. This week has gone well so far, we’re up to full mornings and ds is saying he’ll stay for packed lunch after the holidays... he’s happy, engaging, hopefully we’re getting there 🤞

Lottie where are you in the EHCP process? When you get the draft EHCP, your LA will ask you what school you want and you could at that point request a special school. Then they have to consult the schools for you.

Well done open! That sounds like progress.

@openupmyeagereyes the LA have agreed to assess for an EHCP, we find out about it all soon. He needs one and he needs more support. He's just so unlike all the other kids, no wonder he struggles to cope. @itsovernowthen it is really hard. I work full time,mostly at home due to covid, and have shifted my hours to fit around school runs. My parents used to help when I commuted but now they're worried about covid do wont go near the school. I used to be self employed and might go that way again, although that is also incredibly tough in terms of income and finding clients etc.

Hi. Just a quickie. Sendiass phoned me yesterday to say ds panel for special school is now 18th November and she will find the desicion out that day and phone me so I don’t have to wait for the letter.

I then got a letter this morning called a notice of amendment off the LA to say after carefully reviewing ds recent annual review they have decided a change is needed to make sure ds educational needs are being met they would aim to have this done 8 weeks from the date of letter and they would be in touch.

Is that standard?

I mean I know I’m not supposed to count chickens but I am.

I know ds has to go to the SS and there is no way they can fob him off. So even if i need to appeal or whatever he’ll get to a special school at some point soon.

I don’t think they will can refuse him with the evidence the senco submitted (the 11 page report from that SEND guy who went in was shocking from start to finish)

danni that sounds promising, it looks like he could be moving soon?

Lottie hopefully the assessment will be soon. Do you know if they will go into school to assess?

Ds had a good week, he’s much more settled now. Hopefully the holiday won’t set us back too much. Both the head and his teacher are pleased with the progress he’s made.

We also found out that the year 1 phonics assessment has been moved to December so we will be attempting lots of phonics work this holiday. Ds is happily reading daily which is great.

Also the early bird plus course.

Save your time. It’s normal day to day shit we all do as standard which I did pretty much think would be the case.

It’s embarrassing really, I’m joined up to a few other families on video call with EP as the trainer and the other families are really new to an autism diagnosis and haven’t a clue (which obviously we are all like that at some point, I certainly was when ds was about 2) but for me to do this course after 4 years of daily research is v irritating. It might of been helpful to me in 2016.

Some of the families have minor issues in comparison to with what I’m experiencing with ds at the moment, which they were sharing with the group (god I sound so awful!) and obviously I’m not such a cunt I told them their issues are minor and that they were boring me getting upset that there 3 year old was taking 45 minutes to get to sleep I felt like saying 45 minutes? 😂 but I bit my tounge and offered advice aswell but I feel like ds is way beyond this sort of course with the challenges I have day in day out, I thought it might help our circumstances hence why I signed up.

Nothing in the parent manual I couldn’t of wrote myself (I read all 6 sessions in one night) so rather than drop out as it’s quite rude on my part when the La have already funded my place, I’ll just continue it for the next 5 weeks then it’s another tick box exercise complete.

If you were wondering what it entails, it’s all about routines, star reward charts, de escalating techniques, spotting signs of impending meltdowns and acting before crisis point, sensory breaks, movement breaks, weighted blankets, ear defenders, chewy toys etc etc. Like everything on the list we all already do. x

Brill that ds has settled down open, fingers crossed it continues.

And that’s great about the phonic screening being in December, I’m sure all the work you put in at home with him will pay off x

Oh danni that’s a shame. Like you said, it would have been useful at the beginning but not now. We could write our own courses!

And that’s great about the phonic screening being in December, I’m sure all the work you put in at home with him will pay off

I’m not sure about that, it very much depends how he feels on the day. Plus there are some phase 3 sounds he doesn’t know. Over the summer he was learning tricky words but not picking up the last phase 3 trigraphs. Apparently if they fail they can take it again in June. They need 32/40 words to pass.

Sorry, I sounded horrid belittling the other families problems just then didn’t mean for it to sound so rude. Everyone’s issues are just as important as mine.

Just having one of those weeks with ds this week, his sleeps shocking and his behaviour is draining 😒 he’s been off 11 days already and we still have another 9 days to go.

He’s playing in his room at the minute so I’m sat having a cuppa on the landing watching him catching up on here he’s more or less playing in the dark as he’s shattered his bedroom light so i replaced the bulb and it’s his new game throwing things up and smashing it so not putting another in now, so not only does he no longer have a bedroom door handle he’s not got a light in there now either.

poor kid! 😂

Open, ds does bug club every night he does 1 book then he can watch geckos garage on YouTube (he loves that no idea what it is, some sort of cartoon) the kids YouTube channel search bar he types in ‘gecko garig’ when he wants it on. He’s obsessed with the purple bus called Bobby.

So that’s the only way I get him to read his book, book first then YouTube, no book = no gecko 😆.

He still doesn’t know a few sounds, air and ure his teacher wrote on his journal thing he’s struggling with at the minute.

Confusing for them though, oo as in moon and oo as in book. Same bloody sound written down, different sound when you say it.

Danni we didn't have a light bulb in ds's rooms for about three years! Just put one in a couple of weeks ago and the first thing he did was smash it!
I can understand about the course too, things that would've been really useful a couple of years ago are old hat now. Hopefully there will be something you can learn from it.

I can believe they have a test like that so early on open. Sounds like quite a lot of pressure!

liv we will try and push him a bit but what’s the worst that happens if he doesn’t pass? He’s still learning to read. He reads daily with a TA as well as with us and that’s what matters.

danni everything is relative but you have much bigger issues than many so don’t feel bad. It always gives me the rage a bit when people complain about their kids waking early and it’s 6am. Ds was up at 3am two mornings this week and has now settled back to a more typical 4:30am 😴