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

Ahna it must be a relief to get the diagnosis, one less thing to take up mental space. Sorry sleep is still poor, even if different.

carrie with communication I think it might depend on whether the child can communicate their needs - e.g. hunger, thirst, toilet. I do think that needs can change over time, some individuals might start out relatively high needs but later need less support so I don’t think this sort of classification should be a once and done thing, it probably needs to be reviewed periodically.

dimples I hope you got your toilet unblocked. Very disappointing from the caseworker, have you heard from them yet? Good school are on board, it sounds like a no-brainier. Hopefully you can find the right placement.

Ds slept until 5:35 today but dh and I were both awake before 5 - he’s trained us well! Yesterday he was up just after 4. He had OT this week and has the first proper play therapy session tomorrow. Both of these will be weekly this term.

Open, yes you have said that before which I think is a really good point (about needs changing). It makes me cringe a bit (and thoroughly puts me off pursuing a diagnosis) when I read things like what Ahna says about them saying her DD has high needs ‘and will have in the future’ or whatever the wording was. She’s 3 ffs!

great re the school services for DS!!

Carrie it’s very hard to understand. On paper it’s seems quite simple. Highest level would need most support, lowest level would need least support. I thinks it’s just a guide, remember it’s a spectrum and on different days they will be different levels!

Ds is now somewhere in the middle on paper, (was significant when 3/4, not as severe now he’s older) very verbal as you know and can communicate most things, he’s quite switched on with a lot, but in his class of 8, he’s the one who needs the most overall support, 3 of the children are non verbal and communicate via iPad / makaton. Full time nappies etc. (I say ‘overall’ support, as it’s obvious the other children need more support with speech language and communication than ds)

I always thought the more able child would need the least support, but in ds case he’s the one who needs the most. Bizarre isn’t it. For instance, there isn’t another child in ds school that has 1-1, ds is still on 1-1 two years later.

Each teacher he has had at his SS school tells me the same, that he needs the most support, But then In a way I do understand it to a degree, what I mean is - some of ds class friends are completely oblivious to the world around them, as an example of something that happened, ds was balancing books on one of the children’s heads once and the child was completely unaware ds was doing it, his teacher told me at the time that he made ds take all the books back to the book shelf and told him not to do it, he turned his back and ds had done it again but with more books, the child he was doing it to was sitting completely oblivious to what was going on around him (or above him!)

With ds, he is very aware of the world around him, but doesn’t understand it, and I think that’s the point, it’s exhausting trying to make him learn / understand. He’s very aware but very unaware at the same time and it’s trying to get him to that point of awareness. What’s the point in knowing about the world around him but not knowing what to do in the world around him?

He totally understands cause and affect, and he’s wanting the affect from whatever he causes but then doesn’t quite understand the affects of his causes 😂

I know exactly what I’m trying to say, and I don’t think I’m making it sound like it sounds in my head, in fact I know it’s not sounding like that 🤣 I’ve read it back 3 times and told myself to STFU.

I hope you kind of understand what I’m saying.

Short answer - depends on the child, what kind of day they are having, ds could go to an appointment on a Monday they’d think he was middle of the road, he could go to an appointment on a Friday and he severe, all depends how he presents at that moment in time.

I think that’s really well written danni I totally get it. God I wish DS was a bit less aware and then may keep his bloody glasses on!!!!!!!!!

@openupmyeagereyes how is your ds doing with no night time nappies? Is he completely sorted now? Does he still have accidents?

Ds has worn no nappy for 2 nights now, he’s been perfect both nights. He has a last drink of water at 6pm, he goes to bed about 8.30pm, has a wee just before getting into bed, and has woke up about 5am, dry. Then gone straight for a wee.

His pull up has been dry in a morning for about a month (barring morning, but I think he’s probably done that in the morning as it was quite a fresh week iyswim)

His incontinence nurse said once that happens where he’s mainly dry, then the night time hormone is working, so to try it.

I made a fuss yesterday to him, wow big boy, how smart are you etc, he said ‘how much cash am I getting for it’ 🤣

Bless him. Ds wants glasses! His friends all wear them, he kicks off to fuck about getting a pair. He was wearing George pig sun glasses to school last year at his insistence, I think he felt left out. Lol.

danni ds hasn’t worn a pull-up in, I don’t know, three (?) years. A good while anyway. We do very occasionally have an accident. I’ve taken to trying to bathe him earlier in the day because he drinks the bath water. After years of not drinking a great deal, he’s taken to downing bottles of water sort of unconsciously while he’s watching TV so we have to watch that in the evenings too. Generally he’s fine thank goodness. It sounds like your ds is making progress.

carrie I think it’s very unprofessional when doctors make comments like that because they really don’t know. Plenty of kids make significant progress, not all, but enough so that these sort of dismissive comments should not be allowed. The key thing is to work out what support the child needs to help them thrive. That’s where the system massively falls down.

Oh, and danni your explanation was very good. Spot on.

Open Has it really been 3 years since you took your ds out of night time nappies! Jesus. I remember you mentioning it like it was only a few months ago. Time goes too quick.

I’m really not certain danni I feel like it was pre-pandemic but I’m not certain. Maybe it’s only 2 years.

Toilet remains blocked. Think I am going to have to call a plumber. I really don't need to add more tasks to my never ending to do list. I think that I am going to have to keep toilet roll outside of the bathroom - but that's hardly going to promote independence....

My DS is still wet virtually every night. But then his body seems very immature - height, bone age, only lost 4 milk teeth and he turns 10 in June! On the other hand DD3 is dry 4/5 nights.

I think that our children's profiles are too spiky for simple categorisation.

No word from school or caseworker...I am sure that I will need to appeal to get SS (and aksobto reinstate OT if LA pulls the plug) so I need the LA to issue the EHCP ASAP so that I can lodge my appeal and minimise delay in moving.

That’s it dimples, uneven profiles of learning. Can be so on the ball in one area and so behind in another, ds was like a 7 year old in one area and a 2 year old in another, same child but 5 year deficit between 2 areas.

I was explaining this to my sister, her ds (he’s 2 now, 100% autistic, not diagnosed yet, but has regular appointments and will be soon) he can play on his iPad, finds what games he wants, swipes away what he doesn’t want, but doesn’t speak or communicate he literally just makes loud noises and bashes stuff and stims 24/7, he’s very obviously delayed, but she couldn’t understand how he could do that on his iPad but none of the rest. I explained at his age ds could play a cafe game, I had the old video and sent her it, ds is 2 years old and serving people there orders, collects the coins moves to the next customer, he’s bloody mastermind at it, it’s unbelievable really when I watch the video, then I think of him at 2 and he was like her ds is now, but could do that on his game.

Sorry about your toilet, ds blocks mine up regularly, but with his bowels, no fun sorting it out. What have you tried? I’m quite the pro at unblocking toilets 🤣

Open it probably was 3 years ago.

I feel like something has happened with time since covid. It’s like everything was yesterday but it wasn’t if that makes sense. The days are long the years are short is so true.

I feel like I’ve been in a time warp of school issues since Covid. Feels like it’s been going on forever but has flown by.

Danni I have tried: plunger (2 different ones in case my Mum's was better, hot water, coat hanger and currently waiting to see the results of bicarb and vinegar ...Any other ideas?

Dimples I am like a maniac with a plunger, I don’t like all the other remedies, plunger for me is the best way, when you don’t think you can plunge anymore, keep going. I’ve not yet called a plumber. My toilets clog easily anyway, where we live the drains are all blocked with pines, the street we live on has loads of trees and everyone’s drains are blocked. Both neighbours have the same issue.

I blocked my kitchen sink with some fat a couple of weeks ago, wouldn’t drain at all, dh was like you have been at it for an hour now it’s not going to unblock give up, bollocks to that, after 2 hours it unblocked. That was using my plunger. I admit it is a ball ache doing it for that length of time though.

Hope you get it sorted.

Open how is school going these days? How long is he staying for now?

It’s slow going danni, he’s still not in for a full morning. I met with school and complained about things that were not happening that were supposed to be in place. Hopefully we’ll make more progress this term. He’s more settled this year and has friends, though it’s still often difficult to get him to do his work. EP is hopefully play therapy will help with anxiety and get him into a more steady state. She said he will not fully engage with learning while he’s anxious.

liv how has your ds been about going in to school?

Great excitement here - the toilet is unblocked!

Open I hope that the inclusion of the therapies will help. My sister just had a conversation in a similar vein. School wanted my niece to go to booster sessions before school but my sister's view is that she can't really learn until her anxiety is reduced/managed

dimples what’s happening to try & help her anxiety?

I had a missed call & voicemail from CAMHS today. I’ll call them back tomorrow.

Unfortunately not a lot Open. My DN (and her twin) are in year 6 so moving to secondary in September. They are both autistic but her brother has an EHCP so gets a lot more support than her. She is having some counselling at school. She is very lonely. She has one 'friend' who is nice to her when they're alone but I think embarrassed of her/their friendship. As my niece is just below average academically and does not present any behavioural problems at school they are quite dismissive of her struggles.

Yes @danni0509 that description makes a lot of sense. Agree @carriebradshawwithlessshoes it does seem have to know 'level' for a nearly 4 yo but I guess the report doesn't necessarily seek to predict.

It's quite hard to read in some places, I guess it's worded a certain way so that we can use it for funding applications, and also because the nature of a diagnosis is to focus on what is not achieved / not met, but there were a couple of places I found it particularly tough. It refers to 'a high risk of something breaking in the family' (bad translation) - I think mostly because of the dire sleep situ but not the nicest thing to read.

It's been a weird week with it all, like you all know, not at all a surprise. I think DH was 'hoping' for a lower level (or he didn't really know about the levels) / generally he's been hit harder by it than me, so have been trying to manage that a bit. I think he's been constantly thinking in a year MS might be fine, etc. He's very very focused on her getting a proper 'education' which I understand but atm am trying to be realistic about.

Had a rough night, she's really into banging her head against mine atm. Painful for me (and her I expect).

Ahna I remember how hard I found it when ds got his diagnosis at 3.11 despite the fact that I was expecting it. I cried a lot for the first couple of weeks, blamed myself etc. it was a rough period but it did pass. Anything you’re feeling is ok, please take care of yourself.

Ahna, I think too that Opens words about no one can predict are really wise ones. It’s just in the here and now that we are all focussed on doing the right thing. I had a SALT meeting earlier this week and was bemoaning various things. She said to me which surprised me really look, I know you are saying all this and no promises but I’ve seen children talk much later than DS. 8. 10. 13. I never really think that’s possible but anything is really, isn’t it.

Re DS I’m at my wits end as the screaming has returned. Well it’s not screaming now, it’s a variant but it’s doing my head in. Imagine asking an opera singer to hit the highest note they can manage, hold it for a fraction of a second then stop then do it again? It’s like that. He finds it hilarious when he does it but is doing it for eg on the bus all the way home. The woman practically threw him off the other day and said ‘my ears are ringing.’ All the other poor kids are holding their ears and DS is laughing his head off. This then continues at home. They went swimming yesterday and he was apparently doing it in the pool and driving everyone insane.

he doesn’t do it I’ve found…

1. if there’s just us at home (no audience?)
2. if he’s preoccupied with something else (so distracted)
3. if we are out and about (he’s happy being out, not bored, things to do and see.)

😖😖😖.

well done Dimples too re the toilet, that was brilliant news and Danni, I’m impressed with your plumbing skills!

Maybe not to this extent but do your Dc make noises? What and in what circumstances?