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

Sorry danni, ds wasn'r non-verbal but still helpful to hear how you went about it I think. How was he at school today?

carrie I have no experience of being the parent of a non-verbal child, so I can't fully understand how you must feel, but I have some thoughts.

Has ds been diagnosed with a language disorder? It strikes me that this is more how it presents. Personally, and I'm no expert, I don't think at this stage, working with him all day long on communication is going to be beneficial. It just sounds like a daily recipe for frustration all around. Perhaps starting with something like an hour split into 10 minute blocks throughout the day might be better. Try and make it about play, as danni did, or song works better for a lot of children. Use things that he is interested in to motivate him. It could be that he is just not ready at the moment and he needs something else to click into place first. This is where you'd expect the SALT to be useful isn't it!

danni it's funny you talking about yes/no. Ds wouldn't say 'yes' for ages. He said no from an early age and would just use a roundabout way to say yes, like repeating part of what you said. I wonder what was specifically hard about it?

They didn't call me to collect ds so he calmed down at some point. His activities today have been sensory circuits, reading in the library, playing with moonsand and a card game. We still have a long way to go... Apparently the panel re. the new school is now October sometime.

I did let his school know he’s an anti vaxxer

ds' is supposed to be tomorrow. Some years he does it, some he doesn't. I won't hold my breath.

Thank you Danni x. Did you reward him when he got it right? So if you asked for the crisps and he just laughed and ran off how would you engage him with it all?

Often I ask something and DS just laughs and fools around. I still find it hard to tell sometimes if he doesn’t understand me or is thinking why can’t you get your own red crisps you lazy sod? 😁😁.

Thank you too open our posts crossed. Yes he has a diagnosis of severe speech dyspraxia.

Sorry carrie you must have posted that upthread. As Light says, I don't think it would hurt to try an AAC device. The payback is quite instant, hearing the speech come out, so it may capture his interest. Starting with a few pictures for favourite foods etc.

@carriebradshawwithlessshoes I think you've hit the nail on the head with needing someone else to do this work with your DC. I know it's not the same situation - but over the last 18 months, because of the pandemic, I've become a child psychologist, an OT, a dietician etc. I have the appointments online, then have to do all of the work with my DD and sometimes it needs someone else to do it! I can't be all these therapists, and do a job, and be a "normal" parent etc etc. And because my daughter is demand avoidant, I can't just say "let's do some of your exercises now" because all I get back is "later" / "I'm busy" / "I'm too tired" and so on. V disheartening.

@LightTripper thank you - yes agree a sibling can help on that front! Sometimes DD sees her brother doing / eating something and whispers that she wants the same. Glad you managed to get out - sometimes it's such a relief just to know you're out of the house!

Thankfully DD doesn't have a uniform, but goes to school wearing the same couple of onesies every day. Dropped her off as Pikachu the other week. Literally the only thing she'll wear at the moment, apart from leggings and t-shirt once in a blue moon. She's so skinny and tall though it's impossible to find leggings that fit round the waist and are long enough - which drives her mad, and results in all clothes being ripped off and thrown round the room. I have on many occasions done the glass / dog poo scan in fact even now she often puts her shoes on once at school (we cycle there).

School refusal generally is a whole other topic, not just the clothes but everything about school - even though they're super helpful and supportive, thank goodness.

It’s weird tho I have some yes/ no flash cards. I managed to pin him down yesterday in the context of the wailing (tummy ache he said), I asked him possibly 10 questions with a yes/ no response.. I ask a lot that I know, so I know if he’s understanding. So… have you been to school today? Have you been to grandmas? Was daddy there? Was dd there? Did you have tea inside today (we had a bbq), are you in year 2? Is dd in year 5? Is your house colour blue? Yellow? Green? He gets fed up after so long (I get fed up with myself!!) but answered all correctly so he’s not daft. He does tho have huge trouble getting up and following an instruction, so he would ‘put the yellow ball in the red pot’ if in front of him (with a selection of items) but no way could he do ‘go into the kitchen and get me my crisps’ or even ‘go and get your shoes’ if they were not in his line of sight.

I’d so hope a SS could drill into this.

Btw I never think anyone is telling me what I know open, so if anyone has any thoughts on the whole communication thing shout at me! I can’t see the wood for the trees most days.

@danni0509 really interesting hearing you describe how you worked on language, so much diligence needed... my daughter's language is fine but the two step (hell even a one step ) instruction is beyond her...

So would he go into the kitchen if you asked him to do that? That's the first step.

Florisse, I often think if we pooled our knowledge we could set up a private practice on Harley street between us and make millions. And do a better job than a lot of the professionals we see 🤣🤣🤣🤣🤣🤣

Open … not sure… maybe because he associates with food and does go to toilet when I say toilet. But then I may say go for a bath and he goes the other way (but then is that cos he doesn’t want a bath??). I’ll do more probing. I do find a lot of the time he doesn’t do things if he just thinks there’s no point. That’s why I asked danni about rewards… I know some kids love to play the game, but no way would he just stand up, sit down, stand up, jump etc … I can see he’d be like what the hell are you on about?? 😂😂

Florisse, so would she go and get the red crisps? If no, why not? Motivation or understanding? (Sorry danni, your red crisps have taken on a life of their own here!!!!)

I think the thing is to start very small, with things they can do, and build very slowly. Like a laddering approach.

I.e. you’d first reward for going to the kitchen. When consistent with that you’d put the red crisps clearly in view in the kitchen. Get him to pass you the red crisps while in the kitchen and only then put the two together - go to kitchen to get crisps.

Thank you xx

Florisse if it makes you feel any better my ds is now 8 and only started wearing shoes last year. He would go out in all weathers and places with no shoes on!
Have you read the book 'can you see me' it's fiction written from the perspective of a girl with PDA and loosely based on diary entries an actual girl with PDA made at that age. I found it quite eye opening.
Also DD is permanently in her pikachew onesie!

Carrie when ds was non verbal. I would use one word sentences/instructions with an accompanying photo of what I wanted from him. Then we moved on to choice of two things with now/next boards. I think the hardest thing for me was reducing the amount of language I used with him.
We had quite a good Makaton app called MyChoicePad, which ds enjoyed using. Mainly cause he could press the pictures and have the associated word repeated over and over again! But it also has videos of people signing the words etc.
I hated it when he was non verbal and unwell as he couldn't tell me what the problem was. I remember once having a breakthrough when I gave him a plaster and he pointed to his ear, turned out he had an ear infection!

Well done for getting him in open.

We're having a few challenges here as ds is convinced it's Christmas and keeps getting annoyed that we are not going out to get a tree. I think maybe he just wants to have a break from school.

** open, right there with you!

@carriebradshawwithlessshoes do you think demand avoidance is in the mix too? DS will often ignore my direct questions but then answer them in a roundabout way a few minutes later on his own terms. When he was younger and less verbal, any direct attempt to engage him in communication was met with resistance, even pecs etc. Then he gotvreally into Thomas and oeppa etc and would parrot lines from the shows so I would change them to make it funny, like instead of 'Thomas and his friends' I'd sing 'ds and his friends' then he'd look and smile and laugh, then we took it from there but on his terms. Even when he went to preschool and was saying short sentences with me, he'd never talk there apparently. Now he doesn't stop chatting on but the comms issues are different (reciprocal convo is hard, mutism with peers, has to be his choice of topic etc). Try finding his special.interest and teeming something on that?

Danni I think that is the eternal problem! So hard to remember your own advice in the moment!

Magrat we did similar with our ds. He was super in to Tv and we based everything around his favourite shows. Initially he would physically act things out (very entertaining watching him re-enact the but with scar and mufassa in the lion king with his soft toys) and we would have to guess where he was copying from. Then we added words from the films/tv to his actions which made him laugh. Eventually he Started copying some lines of speech himself.

Arghhh toileting issues.. that is all

We're having a few challenges here as ds is convinced it's Christmas and keeps getting annoyed that we are not going out to get a tree

Oh no! This sounds tricky. Hopefully it won’t last until December. Will he get excited about Halloween instead? Pumpkin picking?

Open yes I keep explaining that Halloween is first, then he says 'tonight?!' And insists that there's a particular toy he should get because it's Halloween tonight.

I think it's that thing of experiencing time differently. But I also think it's probably a roundabout way of him letting us know he wants a holiday/break from school maybe.

Liv I got ds this countdown for Xmas on the AppStore for his iPad (I’ve got it on my phone too) I’ll add pic below of what app it is, tells you hours / minutes / heartbeats until Xmas. It’s cool, ds loves it and checks it every day x

Mum of send. We have toileting issues here too, ds thinks he’s a chihuahua!! Sick of stripping my sofa cushions off and it taking me all night to wrestle them back on 🤣

@danni0509 he withholds all day at school and then I get 8 accidents in 2 hours after school. He did a poo in his pants which promptly dropped out and then the bloody dog bolted with the turd and ate it. Ffs.

At my wits end