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

DH and I were together for a long time before DS so could do all that travelling etc but it was maybe harder to adapt to family life in some ways.
Aww thanks @carriebradshawwithlessshoes about the book! I wrote a chapter book the year before aimed at 6 to 9 year olds then my latest one is aimed at Middle grade (so, 9 to 12 roughly) I self published to start but trying to find an agent now but it's so hard, such a hard market to break into. And meanwhile, each day another celeb gets a kids book deal...!

Uno there have been many a self published success story. Here’s to you 🥂 congratulations!

Feel free to PM me details where I can buy a copy.

Well done Uno!

Carrie I think Open's suggestion about hiring help is sound but I guess it would take a very special person for you to trust them

When I was working at home this morning my next door neighbour (house is a semi and attached to theirs)came around to complain about DS blowing his whistle. He was lovely about it. He said that he had looked into sound proofing! But couldn't afford it (£2K). He said that all the other noise (yikes!) was fine but the whistle upsets the dog. Afterwards I thought maybe I should have offered to split the cost of soundproofing but I don't have any spare cash. DS actually accepted the removal of the whistles v well - not sure that it us going to last though as blowing his whistle is his favourite thing.

Thanks for your kind words Carrie. At the moment it does not feel like I am achieving a lot.

Oh no, dimples. It’s so hard. Is the neighbour out at work? Can you agree with ds to limit it to times the neighbour is out of the house?

Uno, I agree re the book, would love to read it (personally!) if you feel you can PM!

Dimples, agree with opens thoughts. Is there a part of the house he can play with it which is less audible to next door? Away from the adjoining wall?

Random thought is it the noise he likes or the blowing? Could he transfer to something else? Blowing bubbles, blowing something that has less of a noise, I know DS has stuff with his SALT that requires blowing but doesn’t produce so much of a noise.

Sadly Carrie I think that he likes both the noise and the blowing and he also likes playing schools (in which he is often blowing the whistle at his class). He does like blowing up balloons, blowing bubbles and bubble gum. I wonder if there is a toy that lights up or something if you blow into it ...I see what you mean about designating an area of the house where he can whistle. The only rooms that would work are my bedroom or the bathroom. I can't leave him unsupervised in either and also can't bear to shut myself (and DD) in a room with him whistling! So I have just said not at home

Oh @dimples76 how tricky! Yes, I think DS would be the same with a whistle, and the more you said to stop it the more he'd do it for a laugh! We had a plastic one once that disappeared...!
We went to a sen circus thing last week that was surprisingly good. Today, we have to brave haircuts before going to a different show that I booked ages ago, non relaxed performance but still for kids, but now I'm nervous because DS has a tendency to blurt things out!!

Uno, how did it go?

can I post a tiny bit more good news for us? On Friday (after a different change of tactic re toileting thanks to the school nurse) I had an email from school saying for the first time ever DS had had a full day with no toilet accidents. This is common at home but for some reason school eludes him! Just makes me feel that bit more hopeful.

Uno I hope today went well.

carrie that’s great. What did they do differently?

Open,I think because I’m so on edge about the toilet (ms school were too) I’m kind of like, let’s go to the toilet! Do you need to go? dS says yes! So we go. And then he looks jittery and so we go again. And again. I’m living in the toilet!!!

saw a urologist actually last year who said the more any person goes the more you need to go. So this is all wrong. The school nurse has said;

a written toilet plan which DS reads and to be fair he likes reading and seems to take seriously

toilet every 2 hours and no more, unless he’s obviously bursting or indicating he needs to go in which case don’t ignore

for now a little treat after success (for DS a polo)

signing/ pecs to indicate needing to go

tbh the biggest change I feel has been this stretching his bladder, the less he goes the more he genuinely holds off.

Woohoo @carriebradshawwithlessshoes great news!
Yes cheers it went well, DS had a fab time but actually moaned about the younger kids making too much noise! The singer was so hot too, so that was nice for me, but DH hates the music so that was hilarious hehe!

DS had a fab time but actually moaned about the younger kids making too much noise!

Just dropping in to say Happy New Year - has been nice to catch up with everybody's news and some good steps forward all round! Great news on the toileting and weight loss and I also laughed at all DS's little trophies Danni!

I don't feel we have anything at all interesting to report but that's a good thing really so I'm not complaining - I will be contented with "boring" under pretty much all circumstances! We've only had one week back at school here so everyone is tired, but DD has coped well with a new teacher (who seems keen to support even if a bit OTT in potentially unhelpful ways - e.g. "I don't like to see a child sitting alone at break time"... erm - but that's how DD recharges her batteries and she likes it?) But anyway, she seemed to take that on board (I said it a bit more politely than that!) and DD seems happy enough so that's what matters anyway. I will be "glass half full" and say it's nice that the teacher is interested and trying to help. DD was also being picked on a bit last term by a particular boy and school have had a word with him and he seems to have stopped, so I'll count that as a win (for now) too.

Wrote a long one last week then lost it…

@carriebradshawwithlessshoes was wishing we worked at the same firm..would love to share a wine! Re job and DH job and juggle - atm I’m In more of an advisory role which gives a bit more flex but still longish hours and some weekend work on and off. I do love the work, but the juggle is a bit much atm. I’ll give it a bit longer to see how DD goes over next year or so.

i sympathise over the what if thinking (for me more around the regression) but of course agree w others that it’s to be avoided

@dimples76 how long has DS liked the whistle for? Just thinking if it’s a newer thing maybe easier to break

tough weekend with DD as with the week prior. She just seems upset most of the time, very few happy windows. Also Peppa whcih used to be her favourite she doesn’t seem to want any more - or only very specific episodes (and I have nooo idea which). She will keep giving us the remote then going crazy when we choose the ‘wrong’ episode / show. Have tried switching language, muting, etc. but nothing helps. Anyone else had this?

DH seems pretty down. In a couple of the night meltdowns he’s said some quite dark things about not wanting to be here anymore. I know it’s just the tiredness and helplessness talking but obviously not good to hear. Generally he’s great w DD but lately seems to have found it harder and harder (me too, but I tend to go more numb and autopilot kinda)

wishing you a good day in spite of blue Monday!

@Ahna65 is she upset at school or is it a home thing atm?

we don’t have the peppa thing but I do feel when DS is in that frame of mind often HE doesn’t know himself what he wants. It’s very hard when they are not verbal and have no communication method, I don’t think anyone understands it unless they have been there. The number of times ive taken DS to the GP and said I’m just out of ideas, there must be physically something wrong? Please can you just check? It is the hardest aspect about parenting DS by far.

Do you go into an office? Is there any social network there? Just for a quick lunch out or drink after work? Assuming that can fit with DDs? Tbh I often think I’m quite different to a lot of my colleagues but that type of social interaction has a time and place and a value if it’s there.

sorry to hear about DH, I understand that too and have said the same to DH at times when things with DS have been bad. He’s probably very stressed about work also.

Argh, post got lost again !

Yes, crying / whining at school too (not full meltdowns though). Just hope it improves as the routine becomes established. They seem to view it as sorta expected, certainly nothing they find overly challenging which is good I guess

Yeah, definitely she also doesn't know what she wants a lot of the time. It's just impossible isn't it...

I do go into an office 3 of my 5 days and I definitely find the social interaction nice to have. People are mostly nice - find the law firm culture better than what I experienced in London. Also just needing to shower / get dressed properly which doesn't always happen when wfh... better for my headspace. I recognise what you say though re younger / childfree colleagues very much living the good life with trips etc. Also the complaining about tiredness... I will sometimes schedule a call for 9am and people act like it's the middle of the night !

Yeah I think this group would understand about sometimes thinking / saying awful things in the moment. I don't really know what to suggest to help - opening up to friends I guess or maybe going to the GP to talk about it. It's tough because I think ideally we'd be able to take things in turns a bit with the nights / even a weekend afternoon off for some me time, but at the moment I worry that would be too much for him and his mental health.

Happy new year everyone. Been reading along but haven't seemed to have time to post!

Ahna ds was like this a lot when he was younger, still is (now it's things like skipping the intro on videos, or not starting them in the right order).
Agree with Carrie that when ds is in a state like that nothing you can do is right, and it's much more difficult when they can't verbalise why. Ds would pick an activity that was purposefully difficult (like stacking un-stackable toys) then get more and more frustrated when it wouldn't work.
My solutions were to always try and redirect to something else (easier said than done) or just generally try and deescalate by doing something sensory/physical, like spinning in the bucket or swinging. To be honest like most solutions it's time and age that has helped ds to cope.

We're having a slightly different problem here at the moment, in that ds won't get up in the morning (sorry to those with early risers, Not trying to rub it in!) which is making getting him in to school very difficult. There is a lot of bribery happening but I feel like there must be a better solution. If he's like this now what's going to happen as he gets older and bigger?

liv what time does he go to bed? Can you get him down earlier?

V jealous as ds up by 4 most days at the moment 😴

Ahna I remember when a midwife was asking me about pnd after ds was born, and said that it was natural to feel down at times but if you feel like you are staying down and you can’t pick yourself back up then you need to seek help. Hopefully it’s nothing serious with dh, but as we have discussed before on the thread, men tend not to talk or seek help.

Open he goes up to bed at around 6.30. He's often asleep, latest, by about 9pm-ish. He completely stopped taking melatonin a few weeks before Christmas because we told him what it was for and he doesn't want it. It's only been since Christmas holidays that he's been sleeping in. Maybe he just needs to get back into a routine a bit more.

Sorry about the 4am wake ups, that's not fun.

You're right men are often bad at getting help. Dh definitely has low periods and definitely processes ds's needs differently to me. Hope it's just a passing thing Ahna.

It doesn’t seem like you can then liv. Hopefully he’s just having a growth spurt or something and it passes.

I am busy looking at blue light blocking bulbs, having got some lenses to wear over my glasses today (Amazon). I don’t seem to be getting much deep sleep according to my Fitbit so hopefully this will help a bit. Think I will replace at least the bedside lamp bulbs, it’s a bit impractical downstairs due to the type of lighting we have.

Being thick Open. Isn’t the lighting all off when you are trying to sleep? Or do you mean the lighting keeps you awake that has been on before bed? Would have thought after your 4am starts you would have been in a coma 🤣.

11.30 bed for DS last night, so I’m impressed with that liv. And that was after melatonin at 8.30! 🙄🙄🙄🙄

carrie not much stops me from sleeping these days, except ds. Blue light before bed can stop people falling asleep though and affect sleep quality. I also find I don’t get such good quality sleep if I doze off on the sofa before bed which I do a lot these days. I guess it’s the waking up again before bed. As soon as I get a blanket on me it’s fatal.

I’m hoping to improve my deep sleep duration.

Hope it works! Not sure if it’s age or what but I’m finding even one glass of wine results in poor sleep for me. Never used to be like that! Tamzin Outhwaite wrote in an article last week she had to stop drinking when she got to a certain age 😬😬😬