Primary school auties: summer and the new academic year - thread 7

[openupmyeagereyes]

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

Thread 6 - www.mumsnet.com/Talk/special_needs/4166833-Primary-school-auties-spring-2021-and-beyond-thread-6?pg=1

carrie the book I’m reading says that the body reduces its own production of melatonin if it’s supplemented. I don’t know if that’s categorically true or if it’s one of differing studies. I don’t think there are any/many studies in dc for obvious reasons.

The same book also says that there can be other issues at play, such as reflux and sleep apnea, that cause night waking. It’s American so it recommends a sleep study to uncover such things. Tricky to get here probably unless private.

We are currently away, it’s going pretty well. I heard via email that the new school had received ds’ EHCP and that they anticipate it will go to panel at the end of September. We’ve not even been sent the EHCP by the LA yet so hopefully there are no glaring errors or out of date information in it. I did see a draft from the SENCO and she said she’d made the changes I’d requested so fingers crossed. I’m still conflicted about moving him. Keen to see how September goes but I know we have to look at the longer term. I just wish he was old enough to be more involved in the process.

Open I understand your uncertainty about changing schools. I generally have a good relationship with DS's school and they hold him in a lot of affection but I know that it's not going to work long term. It's good that they're moving forward though. I chased the Council this week for DS's EHCP (AR was in April). The duty caseworker replied that the relevant caseworker is on annual leave but they have the OT report and when she returns the OT's recommendations will be incorporated. I highly doubt that will happen as the OT recommended weekly OT sessions, we shall see...

You may be lucky dimples and they include it, fingers crossed for you. I wish ds could see our OT weekly as she’s good at engaging with him.

A bit of a wobble and tantrum from ds today. He’s so spoilt - completely our fault for bribing him so much. I need to find a way to slowly de-spoil him! (I don’t think we can go completely cold-turkey). It was almost blowing a gale at the coast today but ds tolerated it well. After a couple of 4ish wake-ups he woke up at 5:15 this morning. Hoping for more of the same tomorrow.

I do find wind and swimming tire mine out - they always seem to sleep well after both! Something to do with ears maybe?!?

We've got one more week before back to school. I think I'm feeling more nervous than the kids, although they are quite nervous too! We've got uniform sort of sorted (bar taking up all DS's trousers because he has short legs... I don't know how I ended up with one beanpole and one with short legs!) I think I'm going to try to get them to watch TV in it one evening as DD's is definitely less comfy than the polo shirt and pinafore dress she's been used to (now she has trousers and a proper grown up blouse). Just bought about 6 different kinds of socks for her in the hope that one of them works (as well as about 4 different types of trousers). Probably massively overthinking it all, but I just don't want uniform to be uncomfortable when she has so much other new stuff to process!

Scary/exciting light. I can't remember, are both kids going to be at the same school?

Sorry about the wobble open. I know what you mean about the bribery! It gets a bit out of hand here sometimes. It will be interesting to hear about the possible new school. I must say I was quite dubious about moving ds but now I think it's the best decision we've ever made. Not just for ds but also for how supportive the school is of us as a family, made a huge difference from mainstream.

Hope the OT report gets included dimples.

Hope everyone else is ok and having an ok break.

Ds has just spent the week doing holiday club at his school and it worked brilliantly. They are going to try and do it for two weeks next summer which would be amazing! I'm hoping it might make the transition back to school easier the week after next. Dd thankfully goes back next week, so not long to go now till I get the house back to myself!

Light ds starts back next Thursday. It’s early this year. I hope some of the trousers and socks are acceptable to dd!

liv it feels a bit strange to be consulting with a school we haven’t yet seen, but I should be able to visit at some point next term. Glad your holiday club worked well. It should help transition you’d think.

We had a good day out today. Ds has been reading bits and pieces of a new book to himself this evening and cracking up which is so sweet. Back home tomorrow, we’ve had a nice time but I’m looking forward to it now.

That's lovely about ds's reading open.

Yes consulting without seeing the school must feel very weird. Ds's school made us come and do a visit with ds before they offered us a place to make sure everyone felt happy with the placement. So hopefully they will do the same with you.

Yes hoping that going back to school week after next won't be so much of a shock after summer club. But having said that I always think the bus transition is the most challenging bit. I also have no idea whether he gets a new bus with different people or whether it will be the same escort. That could throw him a bit.

You sound v organised Light!

Liv I am jealous of the summer school.

Open you must be so proud of his reading!

Unfortunately I seem to have given DS food poisoning. I cooked sausages for tea last night which were best before tomorrow and looked fine. DS started eating before me as I was dealing with DD's food throwing. By the time I took a bite of a sausage and thought it tasted bad DS had pretty much finished two (his were drowned in ketchup). Poor mite he was vomiting a lot last night. No sickness since midnight but he is so washed out. He had a cry last night that he doesn't want to go back to school. He goes back on Friday.

On hols too… also blowing a gale Open, are you next door? 🤣🤣.

Going ok too but big black cloud re school next week. Very stressful. Can’t stand to think of sending him. It’s really affecting the hol in lots of ways (arguing with DH etc).

He’s been quite good and loving it. I’ve been watching other kids on the beach tho, all playing together. DD would love that but DS pretty much ignores her in favour of doing what he wants (messing in sand, splashing, running through the sea). No interest in sitting with her to build a sandcastle which all other sibs seem to be doing. I try to encourage him but no chance!

Anyone else have this with more than one child?! Is there any answer or is it just what it is?!!!!

Hope DS is ok now dimples! Not your fault!

Yes they are going to the same school @livpotter! I'm looking forward to taking them and having the time before and after school, though the first week is going to be a bit of a nightmare as DS is on half days and DD will be full days. I hope DS's return to school goes OK and the bus etc. is not too disconcerting.

We did the TV test @openupmyeagereyes and she seemed OK, so that's reassuring. Still feeling nervous, can't imagine the first morning will go well - but am trying not to communicate my anxiety to DD! It's lovely that DS is enjoying books so much. DD is loving her books too and sometimes reads to DS which makes me a bit gooey.

@dimples76 nightmare on the food poisoning. I've given the kids milk that's turned before without realising but was lucky they didn't get sick. Hope DS is feeling fully better now!

Is your DS stressed about school @carriebradshawwithlessshoes or is it mainly you and OH? I never know how much planning and talking to do in advance, to make it less of a shock, or whether doing too much of that will just create anxieties that might not have been so bad if I'd just shut up. And of course you never know if you made it better or worse! Fingers crossed he settles in OK when he does go back.

Not entirely sure if it was food poisoning now - we have all succumbed to sickness at different times. Typically both kids seem 100% now even though DD was up half the night vomiting but I feel awful. Totally fed up with the washing too and kicking myself for not organising tumble dryer repair.

DS starts back on Friday. Doesn't seem to want to talk much about school.

Actually had v promising email from Council re OT provision in EHCP. Trying not to get my hopes up

dimples I hope you’re all recovered now, sounds nasty.

Light glad you found some clothes dd is comfortable with.

carrie no advice on siblings as ds is an only. It must be difficult though.

Well ds has not gone to school today. We had a nice visit yesterday afternoon during the inset day but no dice today.

Thanks light. Hope the half days go ok for ds.

Hope you are feeling better dimples. I'm not sure I could live without a tumble dryer! Finger's crossed for you about the OT report.

Sorry about the school anxiety Carrie. My two seem to get on well and do play together now but I can't really remember when it started happening. I always think that socially/emotionally my two are about the same age although I think dd is starting to overtake ds now. I think it helped that dd really wanted to get ds to play, and I think eventually she just ground him down until he gave in!

Sorry about the school refusal open. Have you heard anymore about the consultation?

Dd went back today which is great. I'm kinda dreading Monday but I spoke to the new bus escort today who seems really nice. Just hoping for a peaceful start to term!

liv panel meeting is apparently end of September.

Glad you had a positive start.

Thanks, we are all better now thanks.

Sorry, yesterday did not go well Open

Carrie, my 2 sort of play together on the beach but it's more DS getting DD to admire what he has done than anything. And when DD follows his instructions he's happy but if she does her own thing (which she often does and is only 2) he has no interest.

Open sorry ds didn’t go in yesterday, any luck today? Bet you literally dread term time

Light good luck to dd & ds for new school.

Hi to everyone else / hope first days back goes well for everyone x

Ds goes back Monday. 6 weeks 6 days off school, what in the actual hell is that all about! Need some kind of respite / sn summer club for him next year!

I had an email off his teacher this morning to ask if he had started medication yet and if it’s ok if he can go back on 9.30-12 for 2 weeks and then they’ll increase as they go along, so I emailed back along the lines of that’s fine for 2 weeks to settle him back in but then I need hours increasing.

And also I asked for an OT referral. He asked me when ds first started if he had OT I said no he’d never seen one despite everything he does being sensory seeking, he seemed quite suprised and said the pastoral team would look into it and then I never heard anything else. He does regularly use sensory gym at school but he’s never had any type of assessment / direct input.

I came across a report from the EP recently that said a lot of ds behaviour is driven by his overwhelming sensory needs so I told his teacher on the email I can give him a copy of it and hopefully that will add some weight into requesting a referral, I did mention his upcoming annual review and I want it incorporated into his plan.

Anyway will await his reply!

Ds has his medication appointment with CAMHS (or whatever it’s called now) next Thursday.

His teacher emailed back and said I can request an OT assessment at his annual review in a fortnight (if my local authority refuse for whatever reason then I’ll forward them the report their senior EP wrote 6 months ago) he said the school have a visiting OT on a termly basis but she doesn’t do any direct therapy she directs the school staff.

One way or another I’m going to get him some OT!

I don’t care who delivers it, I just want him properly assessing and a plan devising and then it being implemented regularly even if that’s by school / myself.

Shouldn’t have to devise my own sensory diet and read books for advice!

I hear you Danni. It is shocking that your DS has not been assessed properly by an OT. I am still fighting to get the OT recommendations written into the EHCP.

How did it go today Open?

DS's first day back seems to have been a success and his new TA seems lovely.

During his ehcp assessment at the start of reception so 4 years ago he should have had an OT assessment, he didn’t get one nor did he get a SALT assessment, it was 1 x 15 minute visit with an EP that was all his needs assessment entailed, so bad!

I’m pleased ds first day back was a success dimples ☺️

I’ve just had to renew ds blue badge, I can’t believe the 3 years are almost up!

Anyway I did the online form, added some documents with it so hopefully that will be enough, I’ve clearly demonstrated his needs but by god if they refuse me I’ll personally hand deliver him to the blue badge staff office and walk calmly back to my car 😂😂

Somebody I know who has an autistic child who is non verbal recently got refused (I don’t think he’s a handful but he has complex needs and attends special school, so makes absolutely no sense to me why they refused him)

I don’t know how they could give ds one for 3 years then not renew it when he’s like Chucky now in comparison to his behaviours 3 years ago.

I’m joking about Chucky obvs! ( not ) 🙈

I don’t like renewing stuff, same with DLA, I know he’s more than entitled to it all, but it’s whichever pen pusher decides isn’t it. Just such a faff his disabilities aren’t going to cure themselves 3 years later unfortunately..

Ugh OT is so hard to get! If we hadn't done it privately there is no way he would have got anything on the NHS. It's criminal really as it makes such a huge difference!

Sorry they are pushing short days again danni. Do you think you will contest the placement at the annual review or see how it goes for a bit longer?
I agree all the form filling is such a faff and you have no idea about the person awarding it. Good luck with the blue badge.

Well done to your ds on a good first day dimples.

Ds was up at 3.50 this morning so I'm now having a glass of wine and it will definitely be an early night!

Ds did not go in today either. I can’t see him going back unless something drastic happens and I’ve got no ideas about what the drastic thing might be. A specialist coming to the house daily with a view to reintegration? Whatever, it won’t happen. School can only Zoom with him if there are two adults there that end which makes it difficult even though, technically, his TA is free all day.

dimples glad first day was a success.

liv commiserations on the early start.

danni good luck for blue badge renewal and OT. I dread term time because of the stress each day of trying to get him in, though I admit my appetite for that is reducing rapidly. He’s gone from being chilled out (mostly) to stressed again. Otherwise it’s not awful having him here but a bit of child-free time would be good and less whinging about watching TV. The main problem I’m wrestling with is what to do for the 6.5 hours he’s supposed to be in school because we cannot just stay at home all day Mon-Fri indefinitely simply because he’s supposed to be in school. What do you all think?

Liv when ds was at nursery we had an open day at a banardos sensory integration centre, when we enquired on prices it was £550 just for the initial assessment. Then therapies on top. So i just bought the books and tried to learn as much as poss myself, it’s so expensive privately isn’t it. Regarding the school I’m going to give it some more time, he’s only done on and off part time for such a short time so I feel like I need to give them a proper chance. I’m hoping there’s less interruptions with covid this school year and he can really get settled in, if things continue to go tits up I’ll either call an emergency review or hold on for the next years review unless they kick him out before I’ll just have to go with the flow. Enjoy your wine.

Open. What I do with ds when he’s home at lunch is give him his lunch then just do as normal, we don’t do any school work at all, i just nip out in the car / wherever / usually drive around in circles for an hour or two grab a hot chocolate park up and let him have his iPad in the back whilst I sit with a drink to pass a bit of time away. Sorry he didn’t go in again. I hope you can get some light shed on the new school soon, maybe new start might do him some good?

Open I would not stay at home. Mostly because it would drive me mad but also because I know that I can get DS to engage more in informal learning when out and about and it improves his self-regulation. What are school suggesting? Why do there need to be 2 members of staff? When we were self isolating DS's TA did 2 15 minute 1:1 sessions with him a day which generally worked well. It must be v hard.

I had a similar quote for an OT assessment Danni which I couldn't afford. School commissioned a private assessment but then have not even tried to secure funding from the Council to deliver its recommendations.

I had my first appointment with the Navigate service from Scope today. I think that it is just for parents of children newly diagnosed with ASD or awaiting assessment. I know most of your children have had the diagnosis for longer but if you do qualify it seems good and I feel less alone/more supported.