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

Light good luck on Friday. I am struggling with what to get DS's TA too as she has been with him for 3 years. Some of the other parents were asking me if she was moving with DS as their children are v fond of her too. I wondered about asking them on WhatsApp if they wanted to add messages on Kudoboard or something similar. I thought that I'd probably get her a voucher for something. I have a photo of her and DS that I thought I could get done as a fridge magnet or something similar. As you may gather I am already feeling emotional at their separation! DS still doesn't know. He is feeling rough, poor lad so even if we get a negative test result back today I don't think that he'll be back until next week.

Open that's wonderful re the playdate. Hope that you can get him in again today.

Liv hope that they sort the transport better.

Oh no dimples. Hope the results come back quickly and that it's not Covid!

Well done for getting ds in again open and the play date sounded lovely. Hope that today goes as smoothly. We still have no idea what it was but the well-being teacher was saying that they think the delayed effect of Covid probably played a part.

Danni I'm really surprised they still haven't contacted you!

Finding gifts for TAs/Teachers is so difficult light. Exciting that the kids are going to visit the new school. Are they both going to the same one?
You would have thought the bus people would realise! All the kids on the bus are autistic!

Got the home visit today, just hoping it doesn't throw ds off too much.

Liv I’m surprised too. Just find it really odd they have sent no work, they don’t even have a home reading scheme though so I shouldn’t be suprised. What school doesn’t encourage children to read at home? Especially when they are years behind academically! They will be in touch with me Monday before he goes back Tuesday I’m sure to see if ds had a test (they were so keen on getting him tested when I told them Dh had covid) well he hasn’t been tested so piss off. I’m looking forward to the summer holidays to have a few weeks off there crap tbh, I dread there daily call / email as it’s usually about something he’s done / keeps doing. I just can’t shake off feeling negative about the whole school decision 😒

Light hope the school visits go well.

Open good luck getting ds in today.

Dimples hope ds is ok and doesn’t feel poorly too much longer and results come back quickly.

Hello anyone I’ve missed x

My pcr came back negative. So I’ve had 4 home tests and 1 pcr all negative so hopefully I’ve escaped covid from my germ infested husband (touches wood)

danni glad your test was negative.

We had no luck getting ds in today, he's so dysregulated and grumpy. I spoke to his OT earlier who suggested he may just be over-tired so we'll try again tomorrow.

He scored on the 8th percentile on the Beery VMI. The typical range is 25-75%.

So relieved that DS's test came back negative. He's still poorly. I am really hoping that he is well enough to return to school tomorrow as would like a break from being screamed at.

Great news about the test danni! I'm sorry the new school has been so disappointing so far. Are there any other options in the area?

Sorry he didn't go in open. What does that test relate to? Motor skills?

We had a good visit this morning and obviously ds acted like an Angel and had no problem going on the bus! Typical!
Apparently the seating mix up is to do with the council allocating buses and not to do with the escort/driver. Apparently they tried to give them the wrong bus again this morning and they flat out refused as they knew ds wouldn't get on. So good to know everyone's on our side.

Brilliant the test came back negative dimples. Sorry he's still feeling unwell though

Great that the test was negative dimples but sorry ds is unwell. I hope he's better soon and the shouting stops.

liv hopefully ds will repeat that tomorrow for you when there's no visit!

The Beery VMI measures visual motor integration, so basically how well his eyes and hands work together I think. The upshot is we need to continue to work on his fine motor skills but it's obviously slow going.

The first play therapy session went ok. Mainly just ds getting used to the space and the therapist. He did really well but I'm sure he'll be more confident after another visit or two then I'll step back and he'll see her by himself while I wait anxiously in the car.

Today has been tough, very emotionally draining. I hope he is a bit more settled tomorrow.

Dd's 1-1 loves gardening so we have bought her a special flower pot. Will get her a nice boquette of flowers, some chocolates and a picture by DD

I hope so too open. I hope today is easier for you! Some days are just exhausting.

Thanks liv. He’s very different today, much calmer and cooperative. He’s also gone into school. This morning he woke at 3:30 and dh went in to see him and he went back to sleep until 5:30. That almost never happens these days.

I hope you had a good morning too.

He’s only doing two hours at the moment, but it’s something.

Contrary to my expectations the appointment with the continence team nurse was v good. I felt v listened too and fortunately there was a student nurse who did a good job of occupying DS.

A play therapist is coming out to assess his toilet skills and help with ideas to get DS drinking more. He is going to have a bladder scan and the nurse is going to phone me in 3 weeks time to see how things are going. She did say observing him and hearing to his toileting issues made her think of PDA.
How have your days been?

Crap here dimples. Ds not in school today and bedtime yesterday and today a complete PITA.

Glad your appointment was useful. It all sounds promising.

Shit here too.

Ds been up since midnight 😂😒🙄

He goes back to school tomorrow. (Still not heard from school, they haven’t even rang to see if he’s back tomorrow or anything!)

He’s just gone to sleep but hes been on/off crying since tea time, getting really upset and I don’t know why! (I’m hoping it’s just because he’s tired - and not because he’s getting poorly! Although he seems fine now but doesn’t tell me if he’s feeling off etc)

I’m off to bed soon I had 1 hour sleep last night before he woke me up.

Dimples ds definitely displays pda and it’s been mentioned before but to me he doesn’t fit the bill completely for that.

He definitely fits the bill for oppositional defiance disorder though! He’s the most defiant child I’ve ever met, although half the time I’m sure he does it to wind me up.

Glad your appointment went well, how much does your ds drink usually in a day? (I know it’s a bit like asking how long is a piece of string)

Sorry that you have had crap days Open and Danni.

Danni he hardly drinks anything. When I was doing the diary sheets for the clinic he averaged about 500ml a day. I always knew he didn't drink enough and I'm always encouraging him to drink more but I was shocked when I measured it. She said that he should be having 2 litres a day. That seems an impossible dream - we shall see!

Two litres seems excessive since that's the adult recommendation?

danni sorry you had a bad night, I hope that last night was better and that ds got off to school this morning with no issues.

Ds has refused to go in again today. I have heard nothing about the specialist teaching team but have chased school again. I have emailed his EHCP caseworker and got an automated response to say they aim to respond within 5 days.

I really don't know what else to do.

That a bit crazy danni. I would have thought they would want to keep in touch more and maybe talk about transitioning him back in?!

Great that the appointment went so well dimples. That does seem like a lot of water! Ds never used to drink anything but now he has a 'special' water bottle and he constantly wants to drink out of it.

So sorry open! It so frustrating when you need help and no one is responding.

We have had some awful behaviour over the weekend. Lots of punching kicking etc. But he has got onto the bus willingly both days, which is a relief. Ds's class has been sent home due to a Covid case but luckily we only need to isolate her until end of Monday next week unless her PCR comes back positive. Dreading getting her to take it today!

liv we’ve had challenging behaviour too. Not as frequent as on Thursday but most days we’ve had something. He keeps trying to pull my hair when he gets in a temper. It really hurts.

Caseworker has replied to say hold emergency review to discuss and that the school need to provide alternative provision if he is not in school as they receive a lot of money for him.

liv it is nuts! He missed all last week & yesterday at school but no work sent / no communication. It’s really disappointed me! I did oak national academy / bbc bite size with ds (only a small amount) just to keep him ticking over and a reading book every night but I feel mightily ripped off that he has lost out on education AGAIN through no fault of his own and nobody but me gives a shit! Arghhh! Same as old school 3 years mainly part time but never anything additional sent to do! Just lose the education they never get back but that’s ok. Yet you take them out of school for a holiday and you get a fine hahaha. Corruption like no other.

I got an email at 8.30 this morning from his class teacher to see if I was ok and if ds was ok to come to school. I just replied yes and yes, thanks. Haha! Hope dd’s test is ok.

dimples ds doesn’t drink anything like 2 litres. I was also suprised when incontinence told me how much he should be drinking. They said 8 x 200ml cups and milk isn’t to be counted in that and ideally it should be plain water or very weak squash.

I tried that last summer giving him loads like they recommended but after a few weeks it didn’t help him learn to hold it / train his bladder etc he just wet his pants a whole heap more. He usually has a juice at breakfast, juice at lunch and again at tea, milk before his teeth / bed and water bottle at school in the day or if at home in the day on weekends / holidays then a cup of water or more juice after a mid morning / mid afternoon snack (just robinsons with water) he probably has between 750-1000ml a day ish? Although when he has a bath he probably drinks another 2000ml bath water on top

open I don’t know what the answer is. When ds won’t go in m, do school send work home? I know you do stuff with him anyway but is that you doing it off your own back or school sending it? I hope somebody can help you soon, how very frustrating x

You would think open with ds having an echo and always having dedicated 1-1 she would be doing zoom calls with ds every time he doesn’t attend. It’s a joke. Have they ever suggested it? Ds old school even when he had the specialist teacher costing the LA £600 a week he was being sent home at lunch and he was having fuckall in the afternoon. I hate how schools try it on. Ask the senco to book an emergency review ASAP. I hope he can get in with the asd specialist provision.

IGNORE MY SPELLING MISTAKES. I’ve got a new phone and it’s too big I’m writing all sorts of shit.

Ehcp not echo*

danni they have never suggested Zoom or otherwise. The only time he's had learning at home is during lockdown and when we were isolating before Christmas. I have tons of stuff at home but he won't do anything with me and he probably won't do anything with them either. It's so bloody frustrating.

We'll see what the school suggest. IMO the TA's will not cut it, it needs to be someone from LS or similar who has experience and the tools to engage a child in this state. This won't happen of course, there's no availability for anything else so I'd be amazed if there was here, or if the school were willing to try it.

It's not the school's fault but currently, as has been the case for most of the last 15 months, ds' ehcp funding is being used to support the rest of his class with their learning.