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

Oh and had booked expensive theatre tickets for today for me, DH and DD. Felt so shocking this morning I told DH he would have to go with DD! DS got dropped with mum and he’s apparently been bouncing off the walls all day…

Christmas itself went really well. Yesterday we had some friends over in the afternoon and DS really couldn't cope. He went up and got into my freshly changed bed - which would have been fine but he weed and didn't tell me. Today we have come away for 3 nights with my Mum, siblings and their families which is 17 of us in total. DS is understandably being challenging and my siblings and Mum try to help. I shouted at my siblings earlier when they were being singularly unhelpful re sleeping arrangements. I am currently trying to settle DD but my family is too noisy!

I'm really fed up with myself. It was stupid to think that this could work. Can't get DS to go to sleep and have decided to go to bed myself. Definitely one of those days where I am mourning the life I thought I would have. Better end this pity party!

dimples I hope both children went to sleep in the end. Maybe just keep them up later tonight? Though I know that has a different sort of stress! Are any of your db’s kids ND? I hope you can enjoy the rest of your trip.

carrie sorry you’ve been poorly, I hope things are better today and ds more settled.

Uno I hope you are all feeling better today too.

Dh has been a bit poorly the last couple of days. Ds is fine but spending too much time on screens! We have already played 3 board games this morning though which he’s really enjoying at the moment. That reminds me more of my childhood Christmas, where we played board games and cards (for pennies) amongst the TV.

@UnoQueenie yes a weird in between time but nice to be going away, hope that’s nice.

@carriebradshawwithlessshoes aww sounds really rough, but if it was a work event you were looking forward to of course your have wanted to go (and tbh you can pick up anything anywhere this time of year). How is DS today? The guesswork when ill is so tough when like you say they can’t tell you.

@dimples76 was sad to read your message, sounded like a rubbish moment for you. Are your family generally supportive? Hope things are a bit brighter today. Christmas period is the worst for having an image of how things will go and feeling crap when it doesn’t. Family dynamics are tough even without ND DCs in the mix.

we are doing ok, illness passed for now I think. Had a busy outdoorsy day yesterday and DD went to sleep v quickly when in bed but (probably predictably) that meant a 3am start. Having a lazy day.

Ahna glad dd is better. Have some for the early start.

Ds has been waking earlier again - 4-4:30. Hoping it moves closer to 5 again!

Once asleep the kids slept well. DS is on good form today but DD had an epic tantrum before when we tried to get all 17 of us out for a walk. I had to give up in the end as she was just thrashing on the ground. To be fair it wasn't the biggest sacrifice as it is very rainy here.
There are a lot of ND children in family but DS's behaviour has been a lot more challenging than any of the others on these hols and also I am also the only solo parent. My family do try to help but their interventions are not always helpful.

To be honest I just wish we were at home - DD keeps asking to go home too. There is a big whiteboard in the living room and we have playing an improvised game of pictionary which has been v entertaining for all ages (3-72).
Hope that the early starts improve

@dimples76 how long until you are home?

i am having a tough day. Have had quite a lot of one on one time with DD which is nice but also reinforces the fact that I really don’t know what she wants / feels / just can’t communicate at all. We also seem to have been ‘ghosted’ by a speech therapist and somehow it all just feels relentless today.

I remember reading something about encouraging communication and one of the first rules was ‘presume competence’ - it said if you feel yourself failing at this (starting to doubt if DC is capable of developing communication) then you need to change this. Makes sense, but I feel like that’s me right now, doubting if she will ever communicate with us.
feels like no progress in more than a year and backwards in some ways. How do you guys get yourself out of these thought cycles (if indeed you get them at all..)?

Ahna I think sometimes I get too focused on what we need to work on that I don't appreciate the achievements enough. My auntie and cousin popped over to the holiday accommodation today and they could not get over how much DS had matured.

We're going home tomorrow and have had some really good moments too.

Ahna it’s a good idea to keep a journal of all the little positive changes and progress (keep any negative stuff separately). It’s easy to think things are the same but they likely aren’t, even if one area has stagnated a bit.

I took ds for his flu vaccine today and he was a bit nervous but did it with no fuss.

dimples glad you’ve had some good bits of the trip.

Bloody fireworks woke ds up. He initially got into our bed but now we’re up ffs.

Happy New Year everyone!

Happy New Year all!
@openupmyeagereyes I hope you get chance for a rest today!

I managed to get him back to bed and eventually he went back to sleep for a couple of hours.

@openupmyeagereyes thank goodness!

Happy New Year to you all. Hope that 2023 is a good one for you and yours. DS stayed up to see the new year in. I did regret saying that he could at 9pm when he was asking every minute when it was midnight but he enjoyed it and slept through til 9. DD didn't get the memo that we needed extra sleep and woke me 05:30.

I feel ready for bed again but am making a special lunch with my Mum. The diet starts tomorrow...

We convinced DS it was midnight at about 10pm. Good job too as he still wanted to do games and books once he'd gone up!

Happy new year all! open that is exactly why we never let DS go to sleep before midnight any nye. Last year I had to put him in the shower! We have had experience of the 12.01 waking then up for the night. Never again!

In fairness, fireworks have never woken him before so it was a new experience for us.

A pin dropping would wake DS!!!!!

Whereas my DS would sleep through an earthquake! Just as well as I am on tooth fairy duty tonight

dimples that makes it easier for you! I always do ds’ right after he’s gone to sleep as he always seems quite sound at that point.

We had a better night, thankfully, though ds still waking just after 4. We’re all getting over our bugs too 🤞

Dh back to work tomorrow, ds back to school on Thurs as they have an inset day Wed.

Happy new year all! I was in bed by 10 after a 2am start to the day. New Year’s Eve she slept well but last night again a 2am. So I’m feeling like a zombie, still off work at least but dreading next week already. Am very lucky that my boss has autism in the family and some understanding of the challenges, but I do wonder how much longer I can manage a busy job for if things don’t improve

had a couple of engagements in the extended family over NYE, just fills me with dread for the weddings with DDs ha. Not a good reaction is it!

@Ahna65 i meant to reply to your penultimate message. When I started reading MN long before I posted i remember one poster writing that what ever her DC could do or could not do she always assumed that one day they would be able to do those things simply because to assume they wouldn’t would be too depressing. It was a simple statement but one that’s stuck with me. Wherever DD is now isn’t where she will stay even though no one has a crystal ball. If the SALT isn’t up to the job then she’s not right for DD. We had a couple like that. If she isn’t in DDs corner 100 pc then it’s no loss.

I do feel that there is probably more you can do re the sleep issue if you pursued or wanted to. Some people manage very well on minimal sleep but it’s a big issue for us so I’m like a dog with a bone with DSs paediatrician if needs be when it comes to this. So many things I can’t do anything about but this is one that provided we are prepared to medicate I know we can. There’s melatonin obv but other things too, think I’ve mentioned alimenazine which is what DS takes in v small quantities. Appreciate it may be different out of this country but there are so many sleep meds, no one though will (here) willingly prescribe unless you convince them you are on your knees (which we were.) Id look at those things if you feel you need to, and you can, plus pushing her bedtime on as late as possible to break through the night. It’s incorrect to say you can’t give her more melatonin if she wakes in the night, you can BUT it’s well knows melatonin only works if the child is slightly drowsy/ coming up to natural sleep time. In our experience it will not work if they are totally wide awake in the middle of the night which is why it’s never worked for DS in the night because once he’s awake he’s awake so the aim for us has to be to stop the night wakings. He could have a tonne of melatonin in the night but it wouldn’t work because once he’s awake it’s game over. Hence why things like the fireworks are a massive thing for us.

DS back to school tomorrow and I’m glad. I find my own MH with him is far worse if I’m not well. Fortunately I’m not a generally unwell person but this Christmas has been a corker.

And yes I feel your pain re the weddings. My cousin is getting married in Spring and I’m stressing already. His fiancé who has never met DS asked if he wanted to be a page boy ffs! At the moment we are back to struggling to sit still, completely oblivious to surrounds/ expectations. So he would be wanting to get up and leg it during the ceremony, during the speeches, during the meal and so on. I cannot see currently how I can take him. I cannot forcibly keep him still.

I do find it ironic that although it’s often obvious that other DC have additional needs they do not seem to act like this! Like on the school bus it pulls up and they are all just sitting there!! That astounds me. He did get better but for weeks DS was laughing, wanting to run up and down and finding it hilarious to roll on the floor laughing his head off. Perfect wedding material is that….. ☹️☹️☹️