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

Toilets is a tricky one, there really should be more family toilets! My DS is NT and fine to go on this own, but I didn't let him until he was about 8. DD still can't be trusted in a separate cubicle, but it's only an issue if DH takes her out on his own. She's also a tiny thing so can't reliably reach the loo roll/sink.
I've often wondered if DD has PDA as she's definitely demand avoidant but some stuff doesn't quite fit.

Gosh Jules, I hadn’t thought about the other way, DH can’t exactly go to the ladies can he!! Sorry I’ve started a toilet debate this morning!

PDA is complicated isn’t it… what doesn’t fit Jules? I sometimes wonder if DS is demand avoidant for other reasons, such as he feels disgruntled that he can’t communicate to us what he wants; because he knows refusing something gets a reaction and gives him some control in a world where he can’t effectively make his feelings and desires known and so on. Or just because he doesn’t understand the typical hierarchy of a child doing what the parent asks of them. It seems a grey area but I am uneducated as to it, I admit.

The main one is that she does response quite well to rewards (punishments have little to no effect). Also she'll usually do something she enjoys.

Yes, toilets are challenging for me as a single Mum. DS is obsessed with toilets and would play in them all day. I usually use disabled but DS would prefer to go to Gents. I have let him do this occasionally when we're in a contained space such as a restaurant. However, one time a man came out - I was loitering outside the door and he asked if my lad was inside and said that I had better make sure that his hands were well washed as he had been playing in the urinals! I have also had to go into the gents to extract DS before.

Personally, I think for loos it's fine in ladies due to the cubicles. It's trickier for dads with girls and changing rooms. Fortunately all the pools near us have mixed changing rooms - no way would I allow DS to go and get changed by himself, far too vulnerable, I would probably never see his clothes again and is swimming shorts would be inside out and back to front.

Sorry Dimples, I’m smiling at the thought of you loitering outside the gents 🤣. It’s a minefield isn’t it?! 🤣

@Jules912 DS likes rewards too and star charts, but only if we make sure it's full kn a Fri so he can get his present! He won't do things that are my idea though, even if he likes doing them. It usually has to be his idea unless it's in a routine. He loves routines but only ones he has created really. He has lots of opportunities for doing that at school to help him feel in control.
I think the light bulb moment came for me when i was reading the pda society stuff and thinking, blimey that's me too! I feel the same way and I can't say why really. It's like not being in control floods me with anxiety. If a friend I was meeting for drinks suddenly suggested a meal too, it makes me feel anxious just thinking about it,and not just because I'm not good with last minute change. It feels like, omg someone else is deciding my evening, and I'd already planned to eat xyz so now when will I have that? Will it keep? Will it go off? And just a really uncomfortable feeling if I can't choose what I want to do when.

That's interesting, I'm the same with last minute change. I'd always assumed it was a general autism thing. Seeing DD's issues seems to be making mine more pronounced (that or I can't be arsed to mask anymore).
DD is still waiting for her assessment so I'll mention PDA to the doctor when we get to the appointment.

Kristy Forbes does good stuff on PDA too I think - I think she's PDA and at least one or more of her children. She's got a website and I think she puts stuff on Instagram - definitely on social media somewhere (maybe Facebook?)

We're lucky our swimming pool is all mixed changing too (it's brand new so hopefully that's the "new normal"?) I don't think I'd let either of mine go in by themselves until closer to secondary age - even DS who is NT. Maybe I'm being weird like that I don't know - I just feel younger than that they wouldn't know how to respond if somebody did something inappropriate, so I'd want to be accessible? But I suppose I probably went in by myself younger than that...

Absolutely agree that some people will always huff though! We sometimes use the disabled loo with DD if the hand dryers are really bad somewhere, especially if it's busy and she's already a bit overwhelmed. Her tolerance for these things really varies depending on what else is going on.

I think it’s a tricky general point, when do you let your child do x. DD is 10, very mature and sensible and some of her friends are now ‘out’ for the day around town without parents and so on. DD has mentioned it. Maybe I’m too over cautious but I don’t fully trust her in that situation, if someone spun her a half viable story convincingly I can’t bet my life she wouldn’t believe them. Plus she’s totally spacially unaware and would be run over in a millisecond. I can’t remember when I went out without an adult, can you?! My memory isn’t that good.

had parents eve for DS, it was alright. Teacher said he’s v hard to assess… they use different bands and he’s apparently across 3! Not doing stuff re some things that a pre reception child would do yet showing at least age appropriate reading/ maths skills apparently (they test comprehension via non verbal routes.) They said he was def calmer than back in Sep so keen not to jump back to adhd meds just yet.

happy half term to all, woo hoo!

Letting ds go places by himself fills me with dread. I’m sticking my head in the sand for the forseeable! 😆

I used to go out on my bike, swimming etc. with friends before secondary school age, plus I was left at home from a youngish age. Different times, not just a different parenting approach.

carrie a spiky profile is common in autistic kids, probably other ND profiles too. Great that things are improving with school.

Our half term is not for another week!

I remember going into 'town' for the first time with a friend when I was 10/11. I bought some pretty horrific make up (to be fair it was 1986/87). It was an easy walk from my home and although it is technically a city it is v small and compact. I think that it is a bit locality and child dependent. I am the eldest of 4 and was nearly always v sensible

I can just see if someone said to DD there had been an accident her going with them despite everything I’d tell her beforehand. She also walks around looking up, left, right, and is totally oblivious to traffic! She would stop at a main road but we have lots of little side streets where we live, she just steps out 🙄🙄.

ha ha re the make up Dimples!!! Bet you thought you were the bees knees at the time!

We are the same age so bet that was most likely me too 🤣🤣🤣.

We used to get the bus into town and go to miss selfridge to buy lipsticks when I was young teens.

Ah that sounds like things are improving with the school indeed @carriebradshawwithlessshoes are you in a better rhythm with the level of feedback (outside of parents evenings?)

toilet logistics are interesting. We are still a bit behind with both DDs in nappies (probably DD1 will be for a while though). It can be tricky in some places when the nappy change is in the female loos - think that’s a European thing. Means that it if DH is out alone with them just have to hope there’s no poos!!

we have had a tough week with DD1 the sleep mostly and the meltdowns get louder and longer. When I left for office one morning it reminded me of years gone by after clubbing - my ears were ringing so bad

Apart from meltdowns, we have entered more of a phase of her pushing us to what she wants (sofa for TV, kitchen for food) which is new (and therefore I guess, progress, in a way?) Often still have no idea what she specifically wants though (TV especially, trial and error). She also often brings us both to sit / lie with her by the TV - and really loses it if one of us leaves. Seems to give her anxiety. Again that’s new - logistically hard though with DD2 around too. Anyone have this sort of separation anxiety around age 3?? Or maybe it’s a type of control thing?

Happy half term to those who have it, not for us in pre school land

Ahna things sound tough with dd1. Remind me how long the waiting lists are for diagnosis in the NL?

We have now started half term holidays, hooray!

Ds has slept well this week, awake at 5 for last several days - that IS good for us. I just wish it was more consistent. I do wonder whether our boys will hit that teen period where you can’t get them out of bed and they sleep until 11 at the weekends. I guess that brings its own issues though.

Ahna has the home visit person been any more helpful?

@Ahna65 yes better communication with school I think.

in some ways (communication) that sounds good with DD. I find it hard to remember but at that age I don’t think Ds demanded/ communicated much, he was happy to ‘just be’ and as discussed previously sometimes still is so could happily go without a drink or TV unless I instigated it. Even now if he wanted food he would go into the kitchen and look for it, see if he could find/ reach anything which he usually can, we have climbing on the chair then the kitchen table to get to the fruit bowl and so on. That’s his behaviour more than directing ME to the kitchen iyswim. He does though like to be with us and again as said upthread is very touchy feely, he is like this with staff at school apparently. They have said he’s seeking reassurance that someone is there (an adult), but also he likes the tactile sensation of leaning on someone/ holding their hand etc. it’s something he does with my mum a lot, I’m always telling him to stop hauling her places.

sorry about the nighttime episodes still.. do you manage to avoid any issues with neighbours or can no one else hear? Just thinking back to the woman who knocked on our door at 8pm (she was on the street!!) 🤣🤣.

great re sleep open!!!

We are lucky to be semi detached and the detached side are bedrooms so I think nobody can hear luckily. I often think back to our tiny flat which was previous home and how stressful this would have been there

@openupmyeagereyes diagnosis is underway, so I’m expecting a few more appointments and overall probably a diagnosis in the next couple months

home visit person seems to have ghosted us!! Tbh I’m ok with that but it is a bit depressing. She did seem totally out of her depth and i don’t think it was a good use of council funding. In other news the speech therapist that had previously ghosted us came back (I think bc I contacted a lot of others who all said she was the one with most experience in this type of thing, and she prob worried about her reputation when I said she wasn’t replying). So that’s something - weekly sessions at home.

@carriebradshawwithlessshoes yes the same re tactile - so tactile - sometimes gives me some weird face massage tapping me and stroking me haha.. that’s kinda nice tbh

we are going to watch ‘this is why I jump’ this evening! Been on list for a while.

That sounds very tiring Ahna. Hope that the speech therapist can help.

I called CAMHS earlier to find out where we were on assessment waiting list - after just over 2 years of waiting it will apparently be in 6 months time ....The only good thing is that she said they would assess cognitive too 'if appropriate' - which I am sure with the GDD 'diagnosis' and the EHCP description of needs they will.

Last night I was lying with DD and had just got her off to sleep when DS burst into the room, yelling there's somebody at the door. I had forgotten to lock the door when I went upstairs- which makes me feel awful. Any way it was our neighbour from across the street to say that he had driven into my car (which was parked on the drive!) So, I worry about being bad neighbours due to the noise but others are not without fault.

Oh no Dimples, it’s a hassle isn’t it (the car!). How did he manage that?!

CAHMS wait times are the sane here too…

And don’t worry I’ve gone OUT and forgotten to lock the door. It happens.

Hello
I wonder if I can lurk a bit here, I am trying to support my Sil who has 3 autistic children but is fearful of the online space
Please know I will be respectful and understand why sen isn't in chat etc
Tia

Oh no, dimples. Did he reverse into it? Was there much damage?

Gabrielle I hope you find the thread useful.

Gah, I have grazed all afternoon as ds didn’t want to go out and I didn’t do much that was productive and was bored. Feeling bloated now.

I find it interesting how others diagnosis process is different from my ds’. He saw the SALT a couple of times (at an GP surgery and at nursery) and then we had an appointment a couple of months later at the CDC with a developmental paed and the SALT’s boss and we left with a diagnosis. I guess it must have been obvious.