Primary school auties step into Christmas and the New Year - thread 8

[openupmyeagereyes]

New thread.

This is the continuation of the thread for parents / carers of autistic children / children with additional needs. Most of us are parents of children in year 1 / year 2.

Links to old threads

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

Very frustrating re the taxi Danni but good news on the increased hours and well done DS on the swimming progress!

I’m so pleased with him swimming with a float like that. I didn’t learn to swim until I was about 10, I did swimming at 11 in year 7 I think it was and I wasn’t very good then, took me ages to get grade 1 badge, and even now I can swim but I’d be fucked if I were drowning! I don’t jump in either. I worry I’d not surface to the top 🤣

So for him with all his issues to be doing that at just turned 8 I think it’s amazing really! I’m so pleased he’s doing it twice a week too, double the learning time! I let a little squeal out when his teacher said it 😂

Extra hour is a bonus too! 5 and a half hours peace a day. Feels like Christmas

danni that’s great, sounds like ds is making good progress. How has their feedback been generally lately?

We’ve had a good week. Ds has done about 11 hours in total so almost two days (their day is only 6 hours). Really pleased with that and just hope it continues.

open it’s hit and miss. They email usually on average 3-4 times a week. They always have to get a little comment in there about him being hyperactive despite medication and him not following instructions etc but overall not too bad.

Every so often they’ll phone and have a moan.

He said today ds has made tremendous progress since he started but still a long way to go, and up and down will probably be the cycle going forwards.

I’m pleased ds has managed 11 hours. How are they doing it, when he’s had enough getting you to take him? Do you have to wait in school? X

Yes danni, I’m in school. When he’s had enough they bring him to me and we go home. It’s working quite well but I’ll be glad when I can drop and go for the morning

I just read on the news that the education secretary has said he will offer 100,000 Ukrainian children a school place in the uk.

No disrespect intended to the Ukrainian children, but to him indeed.

How’s that going to work then when they can’t even offer British children a school place? Ds having to go somewhere 20 miles away because there is nothing local. And if this placement fails somewhere further than that.

Some SEN kids have no school place at all. Fuck them though. Of course.

Mind boggles sometimes with this utterly shite government.

You’ll feel like you’ve lost a limb when you finally have time on your own!

Fucking hell. Ds awake at midnight, fussing about a stuffy nose and ranting because he’s still half asleep. Refusing to go back to bed so we’re trying half an hour of TV and then attempting to go back to bed. This week has been rubbish sleepwise. I was so tired I went to bed at 8:30 yesterday and now this. It’s shit.

He went back to bed for about three minutes and then refused to stay there and got up again. Words fail me.

Did he manage to go back off open ?

I feel for you it’s the worst.

Nope. He’s still going. No desire at all to go back to bed or even doze on the sofa. He’s going to be a wreck later and we’ll need to try and get him to nap in the car. I think this is his earliest all nighter, previously was 1 or 1:30.

I knew you were frustrated when I see you write fucking hell 🤣 think it’s the first time I’ve seen you swear. I think when they have sleeping issues it makes everything worse. You have all of my sympathy!

Ds has had a tantrum at 6am because he asked how old he has to be to fly a hot air balloon, I said 18, but it wasn’t the answer he wanted (he wanted me to say 13)

I mean I suppose I could change my name to mystic meg by deed poll but that’s the only thing we’d have in common…. 😅 ffs one of those days already. Send help. Lol x

It’s just so frustrating danni because there’s nothing we can do to try and force him to stay in bed that wouldn’t result in a shit load of noise and anger. We will talk to him about it when it’s a more decent hour. Rubbish start to the weekend, we are just going to be tired and grumpy.

It must be frustrating but your ds cracks me up. He’s an interesting kid.

Sorry Open, you must be exhausted. What a frustrating start to the day Danni. DS came into my bedroom naked this morning. I asked why he was naked and he said he just felt like it. Went to his room and discovered that he had stripped off in the night (he wears nighttime pull ups). Sheet, duvet cover, duvet all soaked in wee. DS's response 'oops'. I fear it may be a long day here too.

Oh dimples

I’m having an issue with night time wetting too. What ones do you use? I have ds in size 7 pampers pull ups (best I’ve found that fit him) he’s soaking through at least 4 nights a week. Not done deliberately though.

I’m sick of changing sheets in a morning or middle of the night if he wakes up wet!

I limit drinks after 5pm, make him have adequate wees leading up to bedtime and an additional wee right before bed then pull up on at the last minute. No drinks before bed. So I don’t know what is happening.

I spoke to incontinence about 4 weeks ago and she said I could try an incontinence nappy but they aren’t pull ups, they are tape at the sides and they don’t suit ds, they always come unstuck when he’s moving around and he has no nappy on at all then.

Meant to add i tried a pack of size 8 pampers pull ups (boots only seem to stock these) and it wasn’t any better. I might have a look online today and see what I can find.

Just PITA having to order online. It’s easier to just grab a pack when I’m shopping etc.

I found drinites the best but we still had the occasional accident. Thankfully ds is dry at night. He wets occasionally but that’s it

You must be exhausted open. I hope you manage to have a nap today.

Dimples not fun. If it makes you feel any better both my kids have norovirus so I have been cleaning a lot of bodily fluids the last two days.

Danni that's very funny about the hot air balloon.

I actually have covid this time. (Never tested positive last time even though I felt awful). I have completely lost my sense of smell, which with all the vomiting going on in the house is no bad thing!

Oh no liv, I hope you are all better soon. I got some extra sleep while dh took a turn with him but still tired and headachey.

Oh dear Liv hope that you are all better soon.

I use Drynites. DS is still v small so wears 4-7. They only occasionally leak. I don't know how I am ever going to get DS dry at night as DS refuses to go for a wee before bed. He will go through the motions but then say nothing is coming. I don't want to turn that into a battleground as unlike the majority of you my child sleeps - I cannot afford to jeopardise that.

We are under continence but nighttime is not discussed as we need to sort daytime out first - I am so fed up of cleaning up after DS. We had about a year of virtually no poo accidents but since Christmas it's a few times a week. The wee accidents have never completely gone away but now he only has them at home with me which makes me feel even more crap. DS also keeps blocking up the toilet with toilet roll - he'll go for a wee and then put half a roll of toilet paper down the loo. If I am not cleaning up after an accident I am fishing paper out. DS is going to be 9 in June - he still has zero motivation to go to the toilet and zero shame/embarrassment about the accidents. DD is 2 years 8 months but not showing any readiness for toilet training yet - I am really dreading that. I have another phone consultation with the continence team the week after next but I am already following all of their advice with no success. Feel like I am failing and really struggling with this alone.

dimples ds does that, stands at the toilet, pants down getting angry saying nothing is coming out (but he can have had a drink earlier and not had a wee for a good while so I know that’s not true) it makes me cross because I know if he doesn’t have a wee he will just wet his pants.

I spoke to continence nurse regarding this issue. Advice they have given is to use a small sand timer for 1 or 2 minutes and they must stand and try until the sand has run out. And she said to make him sit down to wee. That’s just met with loads of screaming though and I could happily flush the sand timer down the toilet along with ds!

Ds did actually flush our sand timer down the toilet once! A little tooth brush timer from eBay.

I sometimes resort to threats if you don’t have a wee no iPad or insert anything else. Which isn’t helpful nor great parenting on my part and actually definitely isn’t helpful for a pda kid. But it is very very frustrating, when you know that you’ll be the one cleaning the accidents up that wouldn’t be happening if they would just use the toilet.

Ds teacher said it’s plain demand avoidance, your making me wee so I’m not going to do it kind of thing, which isn’t helpful when using strategies to help that don’t work.

Other than ordering and fitting him with a catheter bag I’m not sure what to do either. 🤣