Primary School Auties 11: 2023 is here

[openupmyeagereyes]

Thread 11.

This is a thread for the parents & carers of children with additional needs. Most of us have autistic/ADHD children in primary school, but anybody is welcome to join us to chat x

Links to previous threads below.

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
Thread 9
www.mumsnet.com/talk/special_needs/4502988-Primary-school-auties-thread-9-spring-summer-2022
Thread 10
www.mumsnet.com/talk/special_needs/4592899-primary-school-auties-10-summer-and-beyond-2022?page=1

It’s weird isn’t it… I still have the SALTS report of DS at 2 saying he showed no signs of autism. She was the owner of the practice. V experienced. She wrote his speech delay was most likely to be because of his ongoing ear infections. 6 months later another SALT saw him who was part of a CDC panel and said don’t waste your time or money going private, he will not get a diagnosis.

For a long time it wasn’t about what DS was doing but rather what he wasn’t if that makes sense. He wasn’t playing with toys or speaking but he had good eye contact, was sociable and so on. He wasn’t acting in any way ‘unusually’ (don’t mean to offend anyone by that word I just can’t think of another.) No stimming, no obvious sensory issues, normal eating, etc etc.

open yes I have days like that, often I’ll nibble with the kids, pick at their food and so on then have dinner with DH. It’s v easy done when you are around the house.

So when did his behaviour change carrie? I wouldn’t say his behaviour now is typical if he can’t be left alone in the house & needs constant supervision etc. etc. it all sounds exhausting to me.

For a long time he was very very passive. Almost not noticing things. So I remember vividly going to see a friend when he was turning 2 and she had a 2 year old. It was summer, she was in the garden with her boy, when I got there she said she was shattered. Her Ds had pulled all the books out of the bookshelf several times over and just wanted to run onto the road. She had been chasing him down the drive and dragging him back. He thought it was hilarious. DS was barely walking and was just happy to sit on the warm grass, smiling, interacting (albeit not talking.) she had an older child who said about DS mummy why isn’t he doing anything?? My DS wouldn’t have noticed the bookshelf, wouldn’t have given two hoots about running off! It never occurred to Ds he could cause mayhem, never interested him.

i think he would be maybe 3/4 when the penny dropped. Prior I actually thought I was lucky in that I’d never had that behaviour but with hindsight perhaps DS should have been like that other child at 2. He was like the other child at 3/4 and still is now as you say. But often I feel his main issues are around doing now what he should have done then …so I remember nursery saying all the 2 year olds were rampaging, wouldn’t sit still. But now he is like that, still, at 7. In a way (and I know Danni etc says her DS is still like that at 9) I do hope those behaviours Open may fade if he’s behind on the timeline. But who knows. I actually feel if he was communicating and talking I could put up with most things.

I was the only one of ny friends who had a girl first. All others had boys. DD would sit there drawing and my friends had lads literally destroying the house! I remember my best friend coming over and her son practically destroying my dining room aged 2! My friend was literally going ballistic. They used to laugh at DD drawing and say Carrie if you ever have a boy you will get the shock of your life. So re the behaviour now I often think it’s not the behaviour that’s abnormal iits the age he’s doing it!

Sometimes I think maybe he isn’t autistic but maybe he has GDD/ LD / ADHD or whatever. That’s not to say things will be better for him, if he can’t communicate I can’t see how things can be worse tbh. I suppose it’s not about what the challenges are attributed to, it’s what the challenges actually are and how, if at all, they can be overcome or helped if that makes sense.

Ds was almost 4 when he was diagnosed. Depends on the child of course, but I think it often becomes more obvious at 3-4 onwards.

Re. behaviours, I suppose it’s how long they persist. Two year olds may tear up a room but by 3/4 they’ve mostly grown out of that behaviour.

I have a friend who has two boys and she used to say she didn’t listen to any advice from mums of girls

My two are the other way around. DS sounds a bit like yours Carrie in some ways, up until the age of 4 he was so placid. Always smiling but he wouldn't really investigate things or hunt out things to play with - nearly all our play was led by me . At about 4 the raging started and the sensory issues became much more apparent. He was under the same paediatrician from 9 months and her line was always that the focus should be on meeting his needs rather than seeking a diagnosis (but she did arrange genetic testing). I also got 'but he has great eye contact a lot'.
DD (3) is like a hurricane, she is constantly on the go and wants to play (and for me to join in).

Very possibly re your friend! I don’t suppose you can generalise but my DD was very different to my DS and she was very different to my friends DSs! Even now like when I did a SALT course last year and was saying how DS never played with small world stuff (when DD did) the course tutor cut me off and said look, very often NO boys do!

Persist is a good word. I’m finding lots of things persist with DS that I would have hoped would have died a death long ago. DD had plenty of issues but she moved on from them. She was ever changing. I don’t feel DS is.

Dimples, yes… the same, age wise. Does he still have that dr, has her view changed as he has changed in terms of presentation?

Open, playing devils advocate I’ve talked to a lot of people on here who had a diagnosis very young and then by 4 their child was actually presenting very typically. One mum if I can quote her said by 5 she actually used to ‘forget’ the diagnosis her child was given, very categorically, at 2. By 5 he was indistinguishable from peers.

I find it very hard to fathom sometimes.

Persist is the word isn't it.

Carrie, no the paediatrician discharged us - once DS got his EHCP she was kind of like over to education. And then there's nearly always been at least 2 other consultants involved - ENT, urology, endocrinology, neurology (just the last 2 at the moment - phew!).

It’s hard work isn’t it Dimples. He does sound a lovely boy from what you write.

I think (last word of the night I’ve waffled too much!) that wherever our kids start as their benchmark, surely we think they will have an upward trajectory. I often feel that hasn’t been the case for DS.

I'm a bit biased Carrie! But I feel incredibly lucky that I got to be his Mum. Just need a magic wand to make life easier for him. DS is completely different now to 3-4 - in many positive ways such as his curiosity and being affectionate but then his emotional regulation appears much worse (guess that's the opposite to NT kids)

Enjoy half term - I'm trying to decide where to go at Easter.

carrie there’s no diagnostic test for autism - it’s a term for a collection of ‘symptoms’, so I guess there are going to be children given a diagnosis that they then grow out of, or intensive intervention improves things (I don’t know their stories). I wonder what happens as the child then gets older and demands change.

carrie ds emotional regulation is much worse at times than when he was younger too. We have phases where he’s very agressive and then phases where he complains, sometimes loudly, but is not agressive. Much more typical behaviour.

Sorry carrie, that was a stupid post. I know you know there’s no test. I’m not sure how often they diagnose at 2 vs adopting the wait and see approach. I guess if a child is locked in their own world, head banging etc. then it may seem clear cut. Hard to imagine a child having symptoms like that and being completely typical at 5. There are other conditions - mistreatment, attachment issues - that can cause asd type symptoms, but again, those things aren’t easily rectified either.

I don’t think my ds would have been diagnosed at 2 but I don’t know obviously. His symptoms have definitely become more obvious as he’s got older.

Yes the diagnosis stuff is interesting. I feel with DD they will likely be able to say ‘autism’ (I could be wrong but most professionals seem to think it’s fairly obvious) but if they give a level, I don’t know how ‘future proof’ that is. I still feel like we would benefit in various ways from having the diagnosis though rather than wait and see.

both girls played in the garden a bit today, first time really this year. Made me look forward to spring - so much easier than entertaining them inside

Ahna I think levels are likely to change for many individuals that are diagnosed young. They weren’t given when ds was diagnosed. He would be considered high functioning by many I suppose. He’s verbal, communicative and he’s come on so much, but emotionally he’s younger than his peers and needs a fairly high level of support. I hope that lessens as he matures but no idea of course. I just hope he’s able to work and live a mostly independent life, even if it comes later for him than most.

How is half term going for everyone? Good here so far. We’ve had a lovely play date, some downtime at home and a few more things planned this week. I went out and had some fun at the weekend.

Ds still mostly sleeping better. My call with the GP is next week.

Such a lovely day today here.

Good here too. Yesterday we went to some rhs gardens and then baked (and ate!). Today I’m working but the kids are on a long dog walk with my cousin which is nice as it’s a lovely day too, also they enjoy spending time at hers so it’s a change of scenery for them to me/ home.

Not so good here, DH and DS have covid! DD seemingly does not and has been climbing the walls, though she has gone to holiday club today. Tomorrow will be hard though as I have to space out the holiday club days as she can't manage multiple days and I obviously can't take DS anywhere.

Oh no Jules, I hope that you and dd don’t get it too. Are dh & ds very poorly?

carrie glad things are going well.

We are good thanks. Went out with friends yesterday to a local farm type place so having a home day today. Might go out tomorrow and then home again for the end of the week. Got some red roses from DH this morning, my fave, and some chocs. So I'm happy!

Sorry crossed post @Jules912 joke everyone feels better soon!

Thanks, DH is over the worst of it now but still very tired. It's pretty much just like a bad cold for DS and thankfully not as bad as when he had flu in the autumn.

DF in law just sent me a link to a new story about treating autism...so upset, I know it's only well meant, but it's like he's saying oh wouldn't it be great if we could make DS NT. Like, no, it wouldn't because then he wouldn't be him. I wish he'd just accept DS for who he is, I just think we're making progress then bam, I get sent something like this. Feeling very rejected too as I'm most likely on the spectrum, if that makes sense? Not great!!

Sorry Uno. What does dh make of it? Can he have a word with dfil?