Primary school auties thread 9 - spring / summer 2022.

[danni0509]

Thread 9.

Links to previous threads below.

For the parents / carers of children with additional needs, most of us have asd / adhd children in primary school, but anybody is welcome to join us to chat x

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

Thread 7
www.mumsnet.com/Talk/special_needs/4303826-Primary-school-auties-summer-and-the-new-academic-year-thread-7

Thread 8
www.mumsnet.com/Talk/special_needs/4422100-Primary-school-auties-step-into-Christmas-and-the-New-Year-thread-8

Oh no carrie. I hope he perks up soon.

Susan I haven’t read any of those.

How is ds on his meds danni?

Hi. Ds is fine thanks open just his usual self, no better / no worse but I’m pleased he seems ok taking them. I think it’s another one that takes 6 weeks or so to work, he’s been on atomoxetine for 5 weeks now and I can’t say I’ve noticed any difference with that yet, but last 2 days of school before half term he had good days both days which was suprising as they had consistently complained every day for the past month.

I figure that nothing is going to be miraculous with ds so I’m happy to take any improvements really!

I cut his fingernails whilst he was awake for the first time in 6 years today! Lots of planning and texting maisys mummy (dh) again and him replying as maisys mummy. Basically maisys mum text and said hi ds maisys had her fingernails cut this morning, maisy wants to know if your mummy can cut your nails and do you think you can send maisy a picture of you sat having them cut?

1 hour and LOTS of coaxing later. Ds had his fingernails cut with nail scissors! we sent ‘maisy’ a picture 🤣🤣 (dh phone on silent thank fuck, not that I think ds would suss us out, he’s not the sharpest knife in the draw bless him! 🤣)

He’s going to legit go to school on first day of term and talk about this. She’s going to be thinking wutttttt 😂😂

He had been terrified I was going to hurt him and no matter what I’ve said all these years he’s not let me anywhere near. I have to faff in his sleep taking weeks to get them done then they’ve grown again! So I kept saying see I’m not hurting am I? That’s not bad is it ds? See what was all the fuss about! Etc.

Im hoping that’s one problem solved. I’ll not be too ambitious just yet and try to do his toes, fingers will do.

Carrie I hope ds feels better soon. Ds doesn’t get poorly very often but absolutely guaranteed it happens when you really don’t need it to happen! I hope his antibiotics works quickly.

I don’t particularly like using ‘maisy’ as it’s just fuelling his obsession with her, although not sure that it could possibly get any worse!, but genuinely for the minute. I don’t care, I’ll use it!

If it’s going to make him comply and get used to doing things he really needs to do. Then happy days.

I should say, when I say I haven’t noticed anything with the atomoxetine. I mean with his adhd symptoms, but he is definitely more level with his moods, so less erratic, less angry for 5 mins / happy for 5 mins. He’s just more on an even keel. He can still be in a bad mood but he’s less up and down.

Clear improvement on his mood from when he took the other stuff.

Glad to read that the mood fluctuations have remained better Danni.

I received the LA's Ed Psych report. Unfortunately it paints a very rosy portrait of my 'engaged and enthusiastic' boy. It seems like a v light touch assessment. They appear to have only done a couple of formal assessments both of which DS appears to have performed v poorly on but the write up still seems positive...it almost feels like they're trying to brain wash me. One of them was the Blank Language levels DS was secure in levels 1 and 2 but miles off 3 and 4. When I was googling it suggested that 65% of 5 year olds can do levels 1-4 so given that DS turns 9 in a couple of weeks (how can that be?!) Isn't this a significant level of difficulty. Honestly the whole report feels like it was written by Pollyanna!

Dimples regarding blank language levels, we did these with ds for a while, it was an activity salt had introduced us too so I’m familiar with it all.

Ds is similar can do level 1/2, some of questions 3/4 if worded appropriately. But doesn’t understand most of 3/4. I would say yes that does show that your ds is significantly behind given his age. Salt explained to me that with an asd diagnosis they do expect a degree of lagging behind with this because it requires theory of mind for some of the questions. Especially those in levels 3/4. I think 1/2 is more concrete and 3/4 is more abstract which is why my ds struggles with it. Ds speech has improved dramatically over the years and when I say things like he talks the leg off a donkey, he does. But in an autism kind of way! He still has lots of deficits and I’m sure he always will. They have a certain style of speech don’t they?! It’s nothing like talking to an ordinary 8 year old. Hard to explain.

It used to annoy me when salt wrote positive reports about ds speech coming along, all rosy as you say but at the point in time couldn’t even answer his own name or his age!

Keep advocating for him dimples you know his deficits better than anyone. X

Actually I’m crediting the wrong person, ds salt eventually gave us blank levels to do, but it was the speech therapist that used to post on this thread a couple of years ago that gave me the idea to do them. I’m sure it was.

Ds school use the colourful semantics programme with him now for salt. He doesn’t have formal therapy anymore they discharged him a year ago.

Thanks Danni my sister was saying that too about the results being more related to ASD than cognition. DS's vocabulary is good, he speaks in a grammatically correct way but reciprocal conversations, following anything other than 1-step instructions, drawing inferences etc are way beyond him. DS had SALT when he was in the infants at school but I could never get any information about what exactly they were working on! DS's new favourite word is unfortunately. This morning it was 'unfortunately, there is milk all over the floor in kitchen'. How did this happen DS?

I will DS's teacher to ask if she can tell me which classes in the week DS participates in with his classmates. I'm thinking that even if school can say they can meet his needs if he is following a different curriculum for most of the time surely that is evidence that he really does not belong in mainstream

Ds uses words like unfortunately, actually, possibly, perhaps, probably etc etc. He sounds so grown up. And on the face of it (but only if you close your eyes 🤣) you wouldn’t know autism immediately going from his speech. But then as you say, you ask WHY or HOW something happened? And it’s that sort of thing ds cannot answer. They sound quite similar with speech dimples especially when I read you writing about the thousand questions a day 😂

Ds couldn’t answer why or how for a long time, he can a little now. But only really basic questions. And he needs me to prompt him / change the way I’m asking the question to simplify it a bit for him. I always do that, I ask in a specific way then I realise he’s not quite getting me so I ask him it again but change the style and he’s got it.

Bless them! It blows my mind how complicated autism is.

Another thing I often do is, if I know part of a story and I’m not getting the rest of the information from ds, I relay the bit I know to him in the wrong manner so he corrects me, then I’m getting what I need. Usually works.

I’m so sneaky! 🤣

How irritating dimples! I'm sure if anyone can sort it out you can!

Glad the medication is going ok danni.

Ds still gets extra SALT, they use colourful semantics too. It is amazing how much his speech has developed considering he was completely non-verbal only a few years ago.

danni glad ds is on a more even keel and allowing you to trim his nails.

dimples I'm sorry the report doesn't highlight the issues you see with ds. If it were me I would contact them if I had details. God help them trying to help diagnose a girl or champion masker if they consider being engaging with adults the threshold.

I've not tried the Blank levels of questioning with ds, he can be so tricky with questions anyway. I think that he speaks very well and with a fairly good vocabulary but I agree, it is not like a conversation with a NT child as he can be very single minded and repetitive and just ignore anything he doesn't want to answer. I've printed off some level 4 questions from Twinkl based on the Cinderella story. I'll see how I get on!

Oh and we've had a rubbish couple of days sleep-wise. He was up at 3am yesterday and had a meltdown about 3.45am which was horrid. Then up at 3.15 today. Hoping for better tonight.

Ds hasn’t had a poo on the toilet for about 2 years. Always in a nappy. He refuses to go anywhere near the toilet for that, but will for a wee. Anyway its been a long term problem. Incontinence been trying to help us with it for 2 years. We don’t get anywhere. He just will not co operate. And I try often to get him on the toilet.

2 days running he’s done it on the toilet, first day took a while, second day he requested the toilet for a poo.

Thanks maisy, I owe you. 🤣

I do think the medication must be helping this somewhat, because we have done the whole x poohs on the toilet, so does x. Why don’t you. We’ve done the rewards. The Ollie goes to Poo land. Laxitives. Social stories. Everything possibly imaginable.

Im thrilled! 😂

Sorry regarding sleep open. Was last night any better?

I must say ds is being a nob with sleep this week. 4.30 jobs.

Hes been sleeping 9.30-4.30 roughly. 🙄

But he’s not being badly behaved this week so I’ll quit whilst I’m ahead and try not to complain.

I just like my 😴

Wow, that's great danni. I hope you continue to see other improvements

Ds was up at 4:15 today, so still early but an hour later than yesterday. He went to sleep about 7:50. Who knows what causes it, there seems to be no rhyme or reason. I was going to take him to soft play this morning but then spent over an hour building a Lego set for him. We'll do something this afternoon instead, though yesterday he didn't want to go anywhere.

I’m finding with ds he doesn’t want to go out anymore. If we do make it out he cries to come home and it spoils being out as he’s just crying and causing a massive scene. Doesn’t matter if it’s the Park / beach / walks / anywhere, even the Easter egg hunt he had he didn’t want it, just wanted to go home.

Hes never been like this before but last 2/3 months he’s not really wanting to leave the house.

Unless like today, he’s happy to come to Morrison’s with me in a bit, because he knows he’s planning on absolutely rinsing me for shit he wants. I’ve heard him talking to himself about what I’m apparently buying him! Kids not daft 🤣

It’s deffo anxiety with him, the more anxious he’s got the more he wants to stay at home, which I understand. But hopefully that calms down.

What a breakthrough Danni. Hope sleep improves for yours and Open's DS.

We stayed at my Mum's for the last couple of days to pet sit. I am on my knees - I think I'll just have to say no next time. My Mum does so much for me and asks for so little but the hyperviglilance required to protect the animals from my 2 is too much and I have had to leave a list of things broken by DS that I couldn't fix. I have to say his single minded pursuit of his own pleasure (including things like pulling the cat's tail) totally regardless of anyone else's feelings has really got to me today.

On a more positive note my Mum, sisters, bil and the kids are coming over tomorrow to help me sort out the garden and hopefully have some fun.

dimples that sounds a fun way to get the garden tidy but I’m sorry you got pressured into doing it. Hopefully your dm will understand about the pet sitting.

We have an extended family bbq this weekend and I anticipate we’ll be there approximately 20 mins, though that may be optimistic.

Good luck with your garden today dimples

Id be very tempted to post some weeds or worms through your neighbours letterbox, I don’t care she’s 80 odd. If she can give it she can take it! 🤣🤣 joking obviously before anyone calls age uk on me.

open Good luck with the Barbie, I said that in an Australian accent btw. 🤣

I took ds to M&S this morning to buy some corgi chocolate things we’d seen advertised for the jubilee, that he requested, and he bit my arm in the queue, took a right chunk. I was furious. Still am actually. He’s broke my skin and bruised it. No reason whatsoever, he was fine one second then behaving like a piranha the next.

Hes on his iPad now. I’m going to attempt to fix the trampoline soon. (Smyths sent us a new jump mat) then he can go out there, and he can take his teeth with him

Ouch danni, that sounds painful.

We managed an hour and a half out this afternoon before ds wanted to go home. Not bad for him. He's definitely anxious around other children though. I'm sure this is the impact of his new school. Many of the children there are unpredictable and he has lost his confidence. I have already asked the school if I can talk to the SALT about this.

Snap open that’s exactly why ds is anxious around other kids!

Prior to him going to SS, no other kids hit him or anything as he went to mainstream and at year 2 sort of age they know not too. Plus for the last year of old school he wasn’t with any other children.

He started here and they all wallop each other. Make loads of loud noises and are as you say very unpredicatable, ds just doesn’t cope very well with it.

His anxiety has spiralled since starting SS last may and medication in the September. Just can’t for the life of me work out which is the cause. Maybe a combination.

Do you sometimes wish you didn’t change his school? I know of course it wasn’t going well with old one.

I know ds 100% belongs in SS but our problems have intensified so much since he started unfortunately.

I don't wish we hadn't changed school because something had to be done given he wasn't even going in, and in theory it sounded like a good move. It does make me wonder if this is the right school for him though. I think they are making a few changes to his class for next year so I'll be interested to see what and hope that it's a positive change for him.