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

Open I get you there. Ds did another all nighter last Tuesday. Went to sleep at 8pm woke at 11.30pm and stayed awake until the next night. I’d gone to bed at 10 so when he woke up I’d only had an hours sleep myself. Thankfully he doesn’t do that often enough, but he’s consistently waking at 4 ish again. 😒

Currently 6.40am 7.40am and he’s dressed and we are going to the park in half an hour, he’s had his breakfast and his iPad and he’s getting restless now so few goes on the zip wire on the park (which he loves) I’m hoping it calms it.

I prefer the park really early on as we don’t meet a soul and don’t have to worry about ds getting handy with the other kids.

I’m ordering a tuft tray and stand tomorrow when ds gets his dla, will be delivered by Friday I’ve wrote a load of activities down (mixture of sensory & educational ones) from Pinterest and going to order some supplies from eBay to go with it, should help fill the time a bit. I’m ordering the waterproof cover too so it can stay outside.

Love his dla day 😂 I write ‘dla lists’ and tick off when I’ve bought it for him, that’s how we’ve accumulated so much shit over the years!

danni I hope you enjoyed the park. Tuff tables look great, I’m sure ds will have lots of fun. I still haven’t done a DLA application, I really must.

Ds awake at 3:30 today (his usual 4:30 really). Hopefully he adjusts in the next day or two.

I have the call with the private EP tomorrow, I’m not very well prepared for it. She said it’s best to talk about a couple of issues initially so I’m choosing school refusal - how to handle it at home, and how to prevent/deal with tantrum situations that end up with him becomIng physical.

Ds has been diagnosed with overflow constipation.

His pooh has always been weird, hard one day, runny the next, some days he goes 3 or 4 times in a day then not at all for 4 days, when I self referred to incontinence earlier this year they sent a load of leaflets and said to make sure he drinks 6-8 cups of water / squash a day and when he’s not being regular give him high fibre foods (hard when so fussy) but anyway we do our best.

Well the past few weeks he’s been saying his tummy hurts and I realised a pattern it was when he needed a pooh as it stops as soon as he’s been, then for about the last week he keeps getting really agitated and saying his bum hurts right before he goes in his nappy as he still won’t use the toilet then when he does go it’s like diarrhoea, sorry tmi!

Anyway I phoned gp and he has put him on laxido sachets and I had to send 2 stool samples off so I’m going to start him on those sachets this morning, does anyone else’s dc have the same issue?

I’ve been reading him that poo land video he doesn’t like the sound on so I play the video on mute and make it up as it plays, I change ollies name for ds’ name and he likes the arrow pointing at the bum then the toilet, he actually went and sat on the toilet yesterday after watching it but nothing happened so I’m hoping he might start using the toilet again 🤞

Hope the EP appointment went ok open? X

Ds name isn’t Ollie btw that’s the character in poo land if your not familiar

I mean I usually write ds name several times a post and go back and delete before I post so you should all really know it by now 🤣

danni I don’t think I’ve ever seen your ds’ name so your editing skills must be good.

The session with the EP was good. Initial consultation so more theoretical but I’m going to have some follow ups where, hopefully, we can discuss things on a more practical level. We talked about autism and how it manifests for ds and about his school.

We discussed reasons for school refusal and she said that ‘Emotional (or anxiety) Based school avoidance’ is the gold standard theory which looks at the different push and pull factors. She sent me an article on this but I will google it some more. It doesn’t go into the specifics of what practical steps you can take but I guess that’s where it needs to be individual to the child and the school situation, hence the need to google & explore more.

Alongside discussing how to diffuse crisis behaviour the key things she talked about in relation to both were:

• stepping into his shoes - what is the child trying to tell us? She said that most behaviour is because they lack a particular skill or there is a problem that needs to be solved. That they are usually seeking something or avoiding something. The tricky bit is to work out what for each given situation I guess. She also said that there will be an element of ordinary naughtiness too but that mostly there will be a difficulty with something.

• to aim to balance the 2 ‘dials’ of tolerance and situational context and adjust demands based on how well they have slept for instance.

• consistency - have a base level of what is and isn’t allowed. Possibly using social stories to help reinforce those rules.

Books she recommended were The explosive child, how to talk so kids will listen and The whole brained child. I have all of these and need to re-read. In fact I started reading The whole brained child at the weekend so that’s a good start. My challenge is always putting things into practice. Especially as I feel I haven’t had any head space to be able to do so since March. This feels like an excuse though and I need to prioritise it.

danni hopefully if you can get the constipation sorted then he will become more comfortable and a bit more regular and you will be able to get him to use the toilet.

EBSA - posting a link here incase it’s useful for anyone.

We’re not in West Sussex but it seems to have some useful PDFs.

schools.westsussex.gov.uk/Page/10483

I haven’t read the whole brained child (I do have the other two) so I’ll look into that one.

The explosive child although good is a bit to ‘old’ for ds right now, so I’m thinking it may be useful when he’s older, when I see someone mention the explosive child or hear someone mention it all I can think about is Jennifer and her waffles 🤣

You deffo need time to think about how to implement things, I try when ds is in bed but usually too knackered by then so mostly I write stuff down and try figure it out when he’s at school and I can think a bit straighter.

Sounds like she gave you some good advice. The dial bit makes sense. I only have to look at him to know the mood he’s in and know what I can and can’t do with him that day x

I write stuff down and try figure it out when he’s at school and I can think a bit straighter

This is the bit I haven’t been able to do since March. I had a rough few weeks health wise in September (likely stress and/or hormones) and the last several weeks I’ve been trying to prioritise self care for the couple of hours I’ve had while he’s been at school (going for a walk, meditation).

The dial bit makes sense. I only have to look at him to know the mood he’s in and know what I can and can’t do with him that day

Absolutely, it’s important that school are also aware of this though.

I’m going to speak to her again in a few weeks.

It’s nice to have someone independent who is engaged on your behalf and with no ties to the school or LA. It’s absolutely a luxury though as it isn’t cheap.

@dimples76 I hope you’re ok and things with dd are going in your favour

That’s it open, you have had him home 6 months then when he’s gone back it’s only been for a minimal amount of hours so you haven’t had chance to really catch your breath. Hope things look up a bit more this next term for you and you feel better from September.

Also, dimples, yes I hope things with dd are going ok and any recent court hearings / meetings have been in your favour x

Thank you Open and Danni. Unfortunately things are not going to plan re adoption proceedings. It was meant to go back to court on Monday but has been postponed for 3 weeks. Feeling rather low.

On the bright side DS is on pretty good for form. We have had a lot of fun over half term so far ...

I did find some of those books (I haven't read the whole brain child one) seemed more targeted at older more articulate children. DS has developed more ability to identify how others might be feeling but it's hard to get him to talk about his emotions and senses. Yesterday we drove to a nearby country park. DS was v happy but 5 mins into the walk he started screaming to go home. After walking along with screaming child stomping behind I offered him a breadstick. Magically he was transformed - when I wondered out loud if he had been cross because he was hungry he was really surprised.

I’m sorry dimples, that must be very difficult.

Funny you should mention it but I’ve noticed that ds seems to have got hangry a few times, having some big tantrums on days he hasn’t had a snack. So now I’m trying to make sure he has a decent snack mid afternoon and morning.

I really need to start keeping a log of these things!

And very hard to get ds talking about emotions too.
There’s a How to talk so little kids will listen. I have that as well.

I am just imagining what all of our bookcases look like although under my bed is where all of my books live in reality

Sorry things aren’t going to plan dimples

danni I always find my Kindle interesting as you can see the story of my life (since I had it) scrolling through the titles

How has half term been for everyone?

All ok here though weather has been pants and we haven’t been out much. Ds still waking early. He had shifted to 4/4:30 but 3:30 again today 😴

Hope first day back went ok for everyone?

Ds refused his flu spray yesterday, I always consent but know he won’t take the offer up. Same every year, me and his dad get vaccinated so that it’s less likely to bring flu in to our house to protect him iyswim that’s what the school nurse told us to do 2 years ago.

Anyway, first day back all 3 people who have ds were off so he had to have his actual class teacher as his 1-1 yesterday morning and his class had to be covered by another teacher and then he had a dinner lady he’s never met in the afternoon.

I know circumstances etc but nothings consistent, he’s having who ever can have him a particular day.

Nothing I can say or do as they are having a staff crisis by the sounds of it. No idea what the situation is today until I get there.

2 weeks until SS panel I’m hoping it still goes ahead? Actually don’t know! Unless they can do the panel working from home I don’t really know.

I can’t complain really anyway as regardless of staffing issues he’s still got someone with him at all times so I just keep quiet. Ds doesn’t seem to care!

danni on the positive side, at least he’s spending some time with his teacher! Ds also refused the flu spray last year, I’m hoping he will have it this year but it’s not until December. I need to see if I can organise one for me and dh but I’m not hopeful.

Ds went to school today, we had a bit of resistance but not much. He was a bit up and down at school but not a bad first day. He stayed for lunch today for the first time since mid-September. I managed to book him in for a haircut yesterday too.

I spoke to a sleep consultant yesterday, will have a proper assessment on Thursday. Not sure if it will help but it’s fairly cheap so we’ll see. It will mainly be around sleep hygiene I think but she seems confident she can help us. He actually slept from 6:45-5:00 last night, his longest sleep in ages which was very welcome after yesterday when he was up at 1:30 and didn’t go back to sleep

I’m sure they will do the panel by Zoom or MSTeams.

We've been isolating since last weekend as my nephew (who is in our support bubble) had a covid rash. Have not enjoyed reopening the home school. Wish I could say that I had learnt my lessons from last time but I really haven't. Hopefully only 5 school days left til he is back at school....It has highlighted to me that school are really not differentiating work for him. I messaged his teacher that he was struggling with the maths and that he really needed to be more secure with number bonds to 10 and simple addition and subtraction before double digit addition she just said to do what I like!

How helpful of the teacher dimples

Sorry you’ve had to isolate (again?). I hope you are all well. Good luck for the second week of homeschool

Maybe his teacher is reading this thread. She has messaged me this weekend that she is looking for other resources for DS and offering two half hour sessions a day for DS with his 1:1. Not sure how well DS will engage in online teaching sessions but it's worth a go and at least they seem to be listening.