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

carrie I think if it’s literally been years and no progress then it’s probably best to just play to his strengths. Continue to encourage the outdoor play, which is really good for him and have outside adventures if you’re all up for it, which it sounds like you are. Perhaps experiment and mix it up a bit. Does he like pond dipping? Collecting nature finds? Have you been camping with him? Has he been interested in any forest school type activities?

liv sorry ds missed another day of school. How was today?

All good points Open… he never seems hugely interested in doing anything productive so for eg when we holiday in the south all the kids are fishing in the rock pools, DS has no interest just wants to swim. He’s a law unto himself. Sorry, I smiled at camping, you can tell you all don’t know me in RL. I am the lipstick/ hair straighteners/contact lenses/ won’t share a bathroom mum. DD is desperate to go and I may have to (possibly glamping? Does that get you your own toilet???). Will need some counselling and several bottles of wine first tho 🤣🤣🤣. And prob both after too 🤣. If I said to my friends in RL or in the office I was camping I think several would go into cardiac arrest 🤣. Actually I think they all would.

Thank you for your thoughts, it’s so nice to hear ideas and that anyone takes the time to bother writing to help people we don’t really know.

Pre DH I did go travelling to recover from an awful fall out on both the work and relationship front. It didn’t occur to me I shouldn’t take a suitcase or hairdryer which gave everyone I encountered in the back of beyond (and it really was) the biggest laugh ever.

Hope everyone’s having a good eve and the DC are zonked 😴😴😴

Hi all, I am new 👋. I have a son aged 6 on the assessment pathway for ADHD, autism and sensory issues and a daughter aged 4 with what appears to be emerging neurodiversity needs. Finding things very overwhelming at the moment. Lots of challenging behaviours. I do a lot of solo parenting due to DH's other commitments. Any hugs would be appreciated x

Hi @Usernamqwerty welcome!
@carriebradshawwithlessshoes I don't think it's either right or wrong, it's just how your DS is, so definitely just keep joining him in what he likes to do. My DS never got the point of role play toys or small world stuff (he would make the dinosaurs or peppa toys answer endless quiz questions or do races instead of play typically with them for example), but he loves making up his own stories so I decided to support and join him in that. Otherwise if he thinks he's 'playing it wrong', he gets very defensive and doesn't bother again. But he makes all these grumpy characters out of cubes who complain about everything, much more creative than a lot of NT play really, so I would say just keep doing what you're doing and support him.
Glamping is fun and DS loves it. We go basic Glamping though,so one up from camping but still shared loos etc.

@UnoQueenie - thank you 😊. I also have a little storyteller 😀.

My ds is not zonked

carrie I haven’t camped as an adult either, though I did backpack for three weeks during uni which was great fun. Some of my best childhood memories are two summers aged 10 & 11 when I camped at a European beach site with a friend’s family. It was as basic as you get but amazing. Different times. I wouldn’t dare do something like that with my ds, too risky.

Welcome Usernamqwerty, that sounds challenging. Hug here, how are you doing?

Uno does your ds ever get up in the middle of the night? If so how do you deal with it and encourage him to go back to bed without threat of punishment?

I am due a medication review with the GP in Feb for ds’ melatonin. In the previous one I asked for a referral to discuss other options which only resulted in being put on the CAMHS waiting list. I need to push for more this time.

@openupmyeagereyes it's tricky. I just repeat how late it is, how tired he will be if he doesn't get sleep, we read a social story about why our bodies need sleep, and then I also say we might not be able to go to the toy shop on the weekend if I'm desperate!!

Does it work?

Sometimes. He will go on his kindle in our bed if he wishes up early but anything before 5am I try to encourage him yo deep but uts usually in our bed. He sleeps quite late I guess, often not falling asleep until gone 10.15 despite our very long routines! I think we've just accepted ghis is our evenings for now!

Carrie my ds is the opposite, it's almost impossible to get him out the house and when we do it's an absolute nightmare. Family outings are impossible. But in the house ds is generally great. We often can't play games though cause he is an awful loser (which we're working on!). I agree with open playing to his strengths is the way forward.

Thanks open. We had another difficult night last night but he went to school pretty happily this morning. Did your ds get to sleep?

Hi username!

He did not go back to sleep. I went back up at 5 for a couple of hours!

Ds also a sore loser and will often cheat or change the rules to win. Sometimes he’s fine about it. It’s a work in progress.

Liv what is it about being out that you think he doesn’t like?

Open, I know I’ve said this before but there is so much sleep med out there, I know you tried the one starting with p (name eludes me), but there’s so much more that doesn’t get pushed for reasons such as ‘it’s very expensive.’ (Alimemazine which DS takes.) For us once he’s up he’s up so it’s really imperative to make sure he’s not waking in the middle of the night. He only takes 1ml alimemazine but it does keep him asleep.

And Liv, how do you manage holidays etc? Now curious…!

Open I didn’t say but I agree with Uno as a general point, late bedtimes equal for DS a good nights sleep. Early bedtimes make me nervous even with meds as it’s almost like he gets a few hours in then wakes. If I had a £ for every time we have rejoiced at him being asleep for 8pm then he’s actually got up again before we have actually gone to bed ourselves at 11 or whatever I could retire!!

Yes carrie, I’m aware. The difficulty is getting to talk with someone who has the power to prescribe.

There are good physiological reasons for everybody to be asleep by 10pm so I wouldn’t want ds asleep after that tbh.

In an ideal world not but if DS (mine) is going to bed at 8 then is up at midnight for the night he’s had 4 hours sleep. We have had none. If he’s asleep at say 10 and sleeps til 8 he’s had 10 hours and we have had 8.

I can’t remember where you got to with the prescriber, who is it? Not a community paed then? Did you ask to be referred to one?

I would love an earlier sleep time, don't get me wrong, but if i go on too much then DS sees sleep as a demand, so cant then sleep!! I just go with the flow now!

carrie I’m talking about my ds and our situation, that’s all.

When I spoke to the GP last I asked for a referral to community paed to discuss sleep options. We ended up with a referral to CAMHS and are on their waiting list. The developmental paed prescribed melatonin when he was 4. As he, thankfully, has no other medical issues he hasn’t seen a paed since.

In an ideal world not but if DS (mine) is going to bed at 8 then is up at midnight for the night he’s had 4 hours sleep. We have had none. If he’s asleep at say 10 and sleeps til 8 he’s had 10 hours and we have had 8.

in this example, surely you’d be comparing your ds sleeping 8-6 vs 10-8 if he sleeps 10 hours. I’d prefer 8-6 but that’s just me. I used to get up at 6 pre-dc for work but I appreciate it doesn’t suit everyone.

Yes but what I’m saying Open (perhaps not very well) is that if DS goes to sleep at 8 he is very likely to wake in the night so he’s not sleeping 8 til 6. It’s ridiculous as you are right, if he’s sleeping 10 hours then absolutely that should be 8 til 6 or 10 til 8, if should make no difference but bizarrely it does. I don’t know if it’s to do with sleep patterns or what but if DS has been up in the night (sometimes not gone back) there’s a very high chance he’s had an early night that night. I can practically guarantee if he’s up til say 10 he will sleep all night.

I’m just trying to help, as we all do with each other on here which is so nice. This is one thing (well perhaps the epilepsy one too where I waxed lyrical to Dimples) where I’ve successful experience so just want to share that with anyone having sleep issues. So for example I would say I know, for us here, CAHMS has a 2 year plus wait so a development paed referral (even if it’s just for sleep meds as a singular issue) would be worth it.

I also think there’s a lot of confusion around sleep meds, I for one for years thought that the only thing was melatonin. Literally years I believed that. So if DS was taking melatonin and waking I thought well it’s not working, there’s nothing else I can do other than up the dose.

I think it was Danni that educated me otherwise and when the consultant was probed oh lo and behold there’s numerous options!! Shock horror! Would she have told me that with no probing? Maybe not because alimemazine is ‘expensive’ 🙄🙄. I wouldn’t want anyone else to think what I did for years when it’s absolutely not true.