Primary School Auties 10: Summer and beyond 2022

[LightTripper]

Thread 10.

Ooops, sorry, filled up the last thread without noticing - here we are at THREAD 10!! (How did that happen?)

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

It is hard not to 2nd guess yourself isn't it.

I guess because I adopted DS I don't have the same wonderings about causes. In my darker moments though I do wonder if another family could have met his needs better.

At the moment I would most like someone to observe us to work out how to improve toileting. At 9 years old DS is still having accidents 4-6 times a week but only when he is at home with me. The continence
service has been pretty useless so far. We were meant to have a telephone call on Monday but they didn't call or contact me to reschedule. I hadn't thought that I would go ahead with the funeral but I have also never heard back about the home visit they were meant to do in July and never showed up for.

Sorry that’s ongoing dimples I hope you make some progress soon.

danni I meant to comment on your ds’ award for being so helpful in school . You must be really proud. How is his eating now, has it improved?

Yes sorry - I was thinking of causing behaviours rather than causing a neurotype - I didn't mean to imply otherwise but I worded it clumsily! It's definitely an interesting discussion, and it can be good to think about "what we'd do differently" in terms of parenting so we can learn for the future (write our own parenting books!!) but I don't think we should beat ourselves up - we're doing our best in a world where everyone else has an opinion on our parenting and what they "know" is right for all children we know is absolutely wrong for our children. It's not easy.

Does anybody else follow Kristy Forbes? She's Australian and her whole family is ND and I think she is very good on parenting Autistic and particularly PDA kids.

Light you weren’t clumsy at all. I’ve followed Kristy on Instagram, thanks.

Rubbish night here after a pretty decent week with ds sleeping until 5ish a few days. He woke at 2:30 having wet the bed (rare for him) and then wouldn’t go back to sleep.

@LightTripper agree not clumsy at all hope I didn't sound like I was criticising you!

Thanks for the follow rec. I need to have an insta refresh. Follow quite a few US pages but can be a bit much sometimes. Australian sounds like a nice balance!

Bad night here too. DD1 settled around 11 but was up at 3, seemed to be trying to get undressed and had her arm stuck. Settled by 0330 but DD2 was up for the day at 4! I think maybe it's the colder nights. With DD2 I expect it will pass soon enough but the combination is killer...

Have a networking type work event this evening - shoot me...

Sorry you had a bad night too ahna

rubbish day here already and it’s still early. Ds worried by behaviour of older kids again and saying he doesn’t want to go to school any more. He did end up going in though only stayed less than an hour. On the way home I stop to get petrol and while I’m putting my card in he runs off out of my car door. I had to run after him and then abandon filling up. Queue of cars behind me. Having been calm all night and this morning I lost it on him in the car on the way home and spoiled it all. He’s been so dysregulated since he woke up early hours, frustrated quickly, shouting. Ffs, this is why people drink! Send help.

Thanks for the recommendation light, will check out her stuff.

Well done to your DS danni!

Sorry some of you have had bad days/nights, also not been a great couple of days for us. Lots of meltdowns, destruction and hitting, shouting, and she tried to escape the playground whilst I was waiting for her older sister's classroom door to open. At least her teacher witnessed that one so there may be hope they don't think I'm making it all up.

I'm feeling sorry for myself today. The continence nurse called today and concluded that she didn't know how to help DS and that perhaps DS will get better in time so maybe he should just be discharged. So that's really helpful, accidents most days and wet every night at 9 after 5 years of toilet training. She had said earlier that she could consult the psychologist aligned to their team so I asked her to do that rather than discharging him.

Later as I was driving home from work my windscreen was cracked by a stone and my attempt to make tea was rather hampered by the hob dying (and tripping the electric which enraged DS as the Internet was off).

I would just like to go to bed now!

I've been reading through the discussion about how's and whys. It's the strangest thing but for whatever reason I always knew I'd have a child with autism. It was always somewhere at the back of my mind. It's probably why I was always certain I'd only have one child. When he went for his check ups at six months and I told them he had autism they thought I was crazy and that there was no way to know at that age. It was only with the chaos of lockdown and its impact that anyone took me seriously.

Just quickly catching up after a day in the office, sorry to those having bad days/ nights… tomorrows another day. Sometimes when one thing goes off kilter the house comes down.

dimples shoot me for asking what you may say is a stupid question, but given he’s verbal and articulate do you ask him? Why didn’t you go to the toilet? Why have you wet your pants? Why didn’t you tell me? What does he say? I always credit so many issues to NOT being able to ask DS these things but perhaps I’m in La La land?! It’s something we are looking at with the school nurse after the Oct hols… I will of course pass on any info but I do feel with DS a lot of the issue is he can’t tell me in a coherent way that he needs to go. If he could and was still having accidents I’m not sure if the advice would be different?

Glitter absolutely the opposite here. I didn’t even know what autism was, had no experience of it, no family or friends with it or know any children with a diagnosis. Out of all the things I considered (downs etc) it was something that never entered my head.

Open it’s so hard going back to sleep at that time if something wakes you! The other night something happened and I was wide awake for hours even though I was trying to get back off!! I lay there thinking I will sympathise with DS next time this happens!

Bloody hell @dimples76 what a day.

Hope you are in bed and DS has a good night. I will annoyingly misquote Anne of Green Gables who said that "tomorrow is a new day with no [disasters] in it." (I'm going to be optimistic and cut out the trailing "yet")

Carrie he literally doesn't give a shit. Some of the things he does around toileting just baffle me. This is a common scenario:
DS lying on the sofa after school watching TV. I tell him to go to the toilet (or give him a picture of a toilet as that sometimes works better). Some days he will pretend he hasn't heard/completely ignore me/tell me he doesn't need it/starts raging at me, occasionally he will go to the toilet and actually have a wee (all those responses make sense to me). Often however, he goes upstairs to the bathroom, pulls pants etc down says 'nothing's coming' then comes back downstairs and then 10 mins later he wees on the sofa- why oh why?! There is no mileage in asking DS why he has done it. He always just shrugs or gets angry if questioned about anything like this.

@dimples76 my DS is like this too if I mention to him that he might need to do anything!! We reckon it's part of his PDA profile. Also sensory interoception can play a part because, for a long while, DS didn't know when he needed to go. He still sits on the loo for ages sometimes. He went through smearing phases when younger, we gave him yoghurt and paint etc to snear on his tuff tray instead which helped. Could you build it more into a routine so it's not seen as a demand? E.g. we always go to the loo before we go out etc. Im sure youve tried it though. Sorry for a tough day!

@carriebradshawwithlessshoes that must have been so bloody difficult. I've worked with people with autism for many years, did my dissertation on lack of supports for families of children with autism and had read hundreds of books and articles before my son was ever born. I was still in no way prepared or ready to cope. People assume I have all the answers because I'm very good at my job but none of the rules apply to my son its just a completely different ballgame.

Autistic people, please!

Thanks Susan. I agree a lot of it is about interoception - DS also doesn't recognise if he is too hot or cold until it becomes overwhelming, doesn't really seem to register thirst either. I can see the PDA side of things too. Going to the toilet is built into our routine in that he will go straight after every meal, before leaving the house and before bed. However, the danger point is normally when he is enjoying screen time in the afternoon/evening. I think that I need to supervise him a bit more closely then as I will put timers on TV and ipad (which are intended as a toilet prompt) but if I am not paying attention he will switch to other device. I just get distracted then by DD who wants to play and sorting tea etc.

I can't imagine how hard it is with two DC! DS also doesn't recognise if he's too hot or cold, although hes getting there a bit now, but also same re thirst. Like he will just drink drink after drink if they're there. I showed DS how to pause his kindle and pause the TV...that helped a bit with his toileting aa he realised he could just pause it while he went (although for a while we all had to.pause too like statues ha!)

@SusanStoHelitsPoker hi Susan I'm sorry if you find my phrasing offensive I know autistic people is preferred by most. My nephews and brother just prefer to be called people with autism so I've just gotten into the habit of speaking in a way they are comfortable with.

No problem @glittereyelash but autistic people is the preferred term across the ND community. Its late and I don't mean to be grouchy, but i do find sentences that start with 'I'm sorry if you...' to be a bit gaslighting and not very genuine. Sorry if this isn't what you meant, but just FYI for the future.

How is the wording better/ worse Susan (very happy to be told im a bit dense, MN is my learning platform!). Just thinking about other contexts… deaf children/ children who are deaf…. blind children/ children who are blind… happy to be told, I can’t see it just at the minute….

yes I get that dimples and I think Susan’s view of less of a demand is a good one. DS also does the sit on the toilet thing for ages then wees, it’s so frustrating!!!!!!

And yes fingers crossed for a better day for all!! And it’s the weekend!

@SusanStoHelitsPoker I apologised, acknowledged that autistic is generally the preferred term and explained why I myself tend to use different phrasing so I'm not sure whats disingenuous. I'm not here to argue or offend anyone I just wanted some support. My choices are going to be different from yours because we are in different situations.