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

The only enhanced provision secondary in the county is part of an enormous school. It is also for children where autism is primary need - it appears to be for children who are academically okay (unlike DS). I think that he needs SS so that he actually has peers to study with.

Another reason DS doesn't have accidents at school is that he barely drinks anything at school. More often than not his water bottle comes home untouched. It is also v rare for him to poo at school. But I think it is just the routine of going at school doesn't seem an issue whereas my demands are unacceptable and means that he has to stop doing something he enjoys. I think that at school it's any excuse to leave the classroom!

The continence service has tried to discharge him (after not doing anything to help!) If the play therapist has some good ideas I will pass them on.

I tried to train DD before but she just refused to co-operate at all - eg would not sit on potty or toilet and screamed the house down if I lifted her on. I have some time off in lieu from work so she's going to be off nursery until Thursday...fingers crossed that's long enough. She seems on board this time ....

for those of you who cracked this at a normal age (open,Uno) what do you think it was about your DC that made it not an issue? Their dislike of being wet or their understanding of the social norm?

For ds I think it was both. I don’t think he has any big interoception issues, maybe that helps.

Another great morning for ds at school. I’m really happy.

Good luck with dd dimples!

That’s great Open!

and thank you Dimples.

carrie what’s the ongoing situation with the consultant you saw, are you likely to want to use them again? That might determine how you respond.

If the thing that is preventing ds being a candidate for this med (like epilepsy) was discussed at the initial appointment and said not to be a problem, then I’d be tempted to write and remind them that you organised blood tests to the cost of £x based on this. If the specific thing wasn’t discussed then it might not be worth it but they should have done the admin before you booked the bloods.

Yes @carriebradshawwithlessshoes I think open has it exactly right re using in the future, and/or setting out the costs of the blood tests.

Toilet training sounds like a minefield. DD still doesn't seem to have any awareness (or at least care) if she is wet or even if she poos. Will probably try to potty train DD2 during the summer as she has started to tell us before pooing / is probably ready, but I think there's not really any point even trying yet with DD1. I guess will be interesting to see how she responds to the potty etc.

Was just chatting with DH and we are both feeling so downbeat about the sleep. Feels like we enter the weekend not really looking forward to it which is sad. Just one ok night would be so welcome!!

I've been treating myself to various anti wrinkle creams and things haha. Probably won't get me anywhere without a bit more sleep but figured I could justify it. A colleague thought I was 10 years older than I am this week...

Any weekend plans? Not a lot for us. DH's bday so I will cook for a change. Weather doesn't look great

Open, happy to share more details as it was the other way around. The med is primarily for drug resistant epilepsy but also has speech etc benefits. She mentioned at her first meeting and I then read up. I said in Feb but DS doesn’t have drug resistant epilepsy. Is that an issue? She said not all. There is no harm in him taking it and seeing if he will get the benefits around speech even though he does not have drug resultant epilepsy and indeed is being weaned off meds. The colleagues reason for refusing to get involved is DS does not have drug resistant epilepsy which is the primary purpose of the med!

well we were to have follow ups with the consultant after he had been taking 3 months but she may now totally wash her hands of him…

Ahna just waiting for Ds and I know this sounds extreme but can you try and keep DD up mega late? So if she’s up 12 til 5 try and keep her UP til 12, to try and break the cycle? See if you could get even a 12 til 7?

Could be worth a try - have tried til 10 before and she used to struggle getting to sleep so was often up til 11/12, but yeah mahbe worth trying again… anything at all is worth a try !!

Fingers crossed Ahna.

I know what you mean about the lack of sleep aging you. I think I’d look five years younger if I had had more sleep over the last five years.

Tell colleague to bugger off Ahna! I have a colleague, she’s v good for her age (50s). I’ll call her Susan. The office is always full of the same hushed tones… ‘Susan looks so good because she doesn’t have a husband or children.’

makes me laugh. Perhaps true!!

Hi all! Been in London for work all day, rare for me, very enjoyable but happy to be on the way home now!
@carriebradshawwithlessshoes I would make a complaint that you proceeded with the blood tests on unreliable information given to you by the consultant, which caused totally unnecessary distress to your DS. We did not crack toilet training easily at all either. DS hated the demand of being asked to try for a long time. The more we or school asked him, the more he'd hold it etc. He also when 2 or so went through a poo smearing phase once we'd put him in his cot, cue me going in his room at 9pm once he was asleep and silently cleaning!! We solved that one by letting him play lots with slime etc.
He has interception issues but these are gradually improving with age.

Sorry for all the sleep issues, it totally sucks.
DS has had a tricky week at school, ready for holidays probably, so we are hopefully having a very low demand weekend!

My best friend is the same age as me. Married but no kids. She works ft but has so much time to spend on herself and get proper sleep. It’s definitely a thing!

Uno, I wonder to whom we would complain? Hope you enjoyed London!!! In the north we do seem far removed from all that!

that’s great Open that you have stayed so close. My best friend and I were really close for years, went to law school together, hols every year etc. I then met DH and had kids, she didn’t which made no difference to me and I’d even still do long breaks away with her in the year leaving kids with DH. She was my only bridesmaid at my wedding. She then used to say how depressed it made her seeing me with Dc and eventually just went NC. DD still looks at my wedding album and says who is that mum? Why don’t you see your best friend any more? No answer really. A common mn thread tho.

I think it’s common carrie. Luckily my friend has always been very gracious and not said anything. We’ve known each other since we were 12 ish. Went to different uni’s and live in different parts of the country so don’t see each other often because of that. Maybe that helps.

Did she want/ does she want children? I think if it’s a conscious decision it’s possibly different too…

I think she would have but it didn’t turn out like that for her due to a failed long-term relationship. Nearly didn’t for me either hence having ds later.

@carriebradshawwithlessshoes could you raise it with the GMC or whichever professional body the consultant claims to be regulated by? Start by examining if they have an internal complaints policy and then escalate?

carrie I’d complain to the consultant in the first instance. Give them a chance to put it right. Like I said, depends on what you want to do going forwards re. ds.

Thanks. Just spoken with SIl who is a consultant, she said give it til mon. If I had had a work email like that I would have had to sort before the weekend for my own sanity. I suspect she knows she’s fucked up (at worst) or been incredibly careless (at best). I think she’s prob hiding.

ah ok Open, did you say you met DH at uni? I may have made that up! I suppose despite not meeting DH til I was 31 it was then quick for us (married 33, pg 34, DD 35, pg 36, DS 37). No problems getting pg but plenty after 🙄🙄🙄🙄.

No, I didn’t meet dh until mid 30’s that’s why it nearly didn’t happen.

Oh I’m sorry Open im totally confusing you with someone else! No idea who!!! 🤔🤔🤣🤣

I wonder if the friend with no kids/ friend with kids then friendship breaks down is so common. I always feel really embarrassed telling people like I’ve really done something wrong that I’m not telling. SIL is like this though. It’s like people go from being ‘normal’ around families to then just being incredibly bitter when they don’t / can’t have them. I remember my friend just saying all the time (as SIl does) God, I hate it when kids/ parents with kids…. . Generally the next bit is a something completely normal. Why are they crying? Can’t you shut them up? What’s wrong with them? Why were they up in the night? Why are you carrying a bag that’s got so much crap in it? I used to say to SIl she’s 4 weeks old not 45. Then best friend would suggest a 2 week hol in Italy, why can’t Dc stay with DH??

really really hard when you are such poles apart. Not that life revolves around my DC, I want to talk to my friends about far more but I found it v polarising.

I was on the train today and everyone was obv a vommuter. Family got on with two kids and a baby. I was the only one who moved do they could just about sit together. One woman rolled her eyes every time the baby cried so I gave her a hard stare! Honestly, no one showed any empathy.

Commuter! Haha re vommuter!!