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

Sorry people are having a tough week. The weather doesn’t help as you can’t get out and about in the same way. Hang in there

Yeah we're definitely struggling a bit here too this week. It's taken a lot of bribery to get ds to go to school. He's happy once he's there but the morning transition has been hard this week.

We are at home today. Poor DS full of cold and no appetite (most unusual for DS!) Cat v confused that we are at home!

I went to the GP in hope of antibiotics as my chest infection won’t clear. They wouldn’t give them (kinda get it, but have had before and clears straight up) so hopefully my immune system kicks into gear. For me, not being able to exercise is so bad for my mental health and I’ve really struggled last couple weeks.

one of those weeks which seems full of appointments for DD. Today it’s the intro meeting at her new school. Lots of paperwork I think and unfortunately the key worker doesn’t speak English. Wish me luck…

wishing everyone better days!

That sounds challenging Ahna are you able to take someone with you to help translate?

Sorry to read of everyone's struggles.

We had a very full on adoption therapy session yesterday. DS was pretty amazing at the time but I feel anxious for him today trying to process everything without me. I wish I could have taken the day off and kept him off school but that was not possible

Well we have a magical solution to the shite week!!! Crappy cheap Wi-Fi headphones 😂 DC is amazed and enthralled ... playing duplo whilst listening to Pixar movie. No moaning about the headphone strap or material and actually looks happy! Now is this because I ordered them for me or are we just really slow luddites and everyone else has been doing this for ages???!!

Great news about the headphones @StarDog!

Hope you feel better soon @Ahna65 and the meeting went okay.

Another one having an awful week here. Worst school pick up today I think we've ever had. DD in meltdown mode the second she got out the classroom, screaming and hitting, sitting down on the ground, refusing to move. It took us so long to get home because she kept sitting down every few steps! She said some really awful things which I try so hard to brush off as I know she doesn't mean them, but it's tough to hear. One minor plus is that the teachers witnessed the whole thing so hopefully there will start to be a little more understanding there.

Hoping for a better end to the week for everyone!

Sending you hugs Cathster
Don't know any miracle cure for those meltdowns but we've all had to deal with them in the most public places and we all do the best we can in the moment.

thanks all meeting was fine and yes DH came too so language not a bit issue. The key worker seemed nice although not necessarily hugely informed (she seemed not to have heard of a regression before, which I found odd). DD will be joining a class of 4 (she's 5th) with 2 staff, so hope that will suit her well. They seem big on pictos and I don't think she's ready for those (or that they suit her really) but guess it doesn't hurt to try. She's the only girl in her class but I guess that's neither here nor there!

@dimples76 that indeed sounds intense, for you all - do you go to the therapy session together?

Nothing to report other than to say thank god it’s the weekend! Day off work so sitting in a cafe on my own with a large coffee….. peak excitement of the week ☕️☕️☕️☕️

dimples how did ds manage yesterday? Hope all was ok.

StarDog hope headphones are still working a treat.

Ahna glad meeting went well. Hope you’re feeling better.

Cathster hope dd was better coming out today. Meltdowns in the playground are so hard.

carrie coffee shop alone sounds lovely.

We’ve been swimming today which was fun. Ds has had an ok week at school, some ups and downs. I’m glad it’s the weekend too. Wondering about a takeaway but it feels very lazy…

@openupmyeagereyes do it!! Not lazy at all. That said I always end up disappointed! Feel like food doesn’t end up travelling well. Could do a pizza though. You’ve got me thinking now!!

swimming sounds nice. We are trying to look into some casual lessons or quiet opening hours - no way will she be ready to learn yet but literally every time we are near water she’s trying to go in so I think we need to at least start the learning process…

I want takeaway now!
DD had a surprisingly good week at school, which is great but I'm not aware they've changed anything so don't know if it'll last!

Ooo take away!! Go for it Open! We have a few within just a few mins drive plus a very good fish and chip shop so do partake from time to time. Have to say certain pizza take aways always taste far better than cooking them and then having a big cheese stuck to the oven clean up!!

DS came out of school saying that he had missed me and gave me a big hug - v unusual for him. We had swimming lessons after school which went remarkably smoothly and then have had takeaway pizza snuggled on the sofa watching the Tiger who came to tea. Kids are already in pjs and it is a very rare moment and peace and harmony chez Dimples.

Hope that you are enjoying the end of the week.

Carrie I am so jealous of your solo trip to a cafe!

Not to rub salt in the wounds of those of you with early risers but I am having to wake DS up on school mornings - can this be the same boy who used to wake at 04:30 like clockwork? Sadly still no lie ins for me yet due to DD but maybe one day!

No salt dimples, it gives me hope! Sounds like a lovely evening.

I didn’t get a takeaway, I made my stir fry. It didn’t take long.

We've ordered a second back up pair Open !!
Amazing how easily you get used to buying back up versions of everything.
What is lovely about this thread is that some of us are having a good day and some of us the worst but we all know it could reverse tomorrow. But tomorrow everyone is still here and offering sympathy or suggestions or just a "hang in there"

Sounds like a lovely afternoon @dimples76! How old is DS - also gives me hope that maybe one day we will get past our 4am wakings!

Our day yesterday was also surprisingly peaceful after such a rocky week. DD was happy to delay her usual after school routine to see her sister run a race and for the first time ever we did not have a meltdown after bath time - I'd bought a giant fluffy hooded towel that I whipped on her as soon as she got out so she didn't have time to get cold, and it meant she could just run round in it to her hearts content until she was dry herself

@dimples76 yes like others the good sleep anecdotes are appreciated.. gives hope :-)

Cathster, he is 9 now. It has been a gradual progression and of course because it's the weekend he woke just before 6 today. But we have probably had about 2 years now of waking up after 6.

Today's challenge is to get the Christmas decs down from the attic as I need to get the refillable advent calendars out ready for Thursday

Probably jinxed things typing this and I know it won't last but DS does seem to be quite calm at the moment

School are just really getting me down at the moment. Don’t know if I’m being unreasonable.

but to recap I never wanted him to go there, his MS forced him out. But everyone said how he could really progress in this SS, the school itself made some big statements, he would change ‘very quickly’ there, we would be surprised in the change we saw, that I shouldn’t be working at home with him, that was their job and so on. It has been left from a couple of weeks ago that I don’t want messages every day, just once a week a round up and ideally just to know something he’s done well or learned that week.

he’s been there now 3 months which I don’t think is an insignificant time. Not for major changes, but for something. After our chat re emails they went quiet but now aren’t even mailing to say what he has accomplished or done or done well. Or even any incremental progress. So all I get is factual ones about toilet accidents, factual ones like ‘he is now having SALT at 9 am every day.’ And the generic one about what the syllabus is. And he is no different for being there, no different at all in my observations. In some ways I see behaviour I didn’t see before.

appreciate he is being exposed now to services like SALT when he wasn’t before but day to day is no different, no more positive, no more uplifting or encouraging than at MS. All the while his clothes are constantly in his bag covered in crap like glitter or sand or water like he’s in play school. So why have I moved him??

everyday I’m looking at the clock at 3.30 and logging off work to actually work with him in the lounge on maths, reading, etc because I can only assume he’s not getting this in school. I feel very resentful I’m still here doing this given their great promises and reassurances. Ultimately I’m glad I do do it because it reassures me that he does understand etc but I’m thoroughly fed up I’m still having to.

DH and I are at loggerheads as he says I’m just pissing them off and they are his only chance now. Very depressing. It’s really getting to me and sorry for the rant!

Re sleep, as DS takes sleep meds he must by virtue of that be a poor sleeper but we do see a definite pattern. Maybe once every couple of weeks he will wake ‘in the night’ which I would define as before 5.00 and then he is up for good. However those are always nights when he has gone to bed before 9pm. So last Monday, typical eg, he was tired and in bed at 8.45 which is amazing for him. It makes me laugh when people say ‘oh but we want our nights without the kids’ because yes, we did have our night, glass of wine, watched TV for a couple of hours, great. He then was up at 3.30 for the day so given we had only gone to bed at 11 meant we had had 4 hours sleep which each to their own and all that just killed both of us the next day.

in contrast to last night say… as always dS didn’t seem tired, never does, so we gave sleep meds at 9 he went to bed at 10 and was asleep 10.30. Didn’t hear a peep until DH woke him up at 8.30 which for a weekend suits us and DD will stay in bed as long as she can too, so yes, Dimples, we are then waking him up too (even when it’s school he can get up at 7.45 and we still have loads of time as don’t leave until 8.40). We often with a 10 pm bedtime have to wake him at 7.45.

which really on a 10 til 7.45 sleep still means he is getting 10 hours sleep so I think how can I expect him to really go any earlier?

carrie I agree, disappointing that they made such statements, surely it’s in their interest to be cautiously optimistic and then over deliver. That said, I wouldn’t assume he is not doing reading or maths, I think you should ask them outright, or get dh to. Then you will know if you need to be logging off at 3:30 or not.

In ds’ class I’ve seen kids sitting playing with sand at their desks while listening to the teacher. For many kids with ADHD busy hands helps them concentrate.

What other changes are you expecting to see at home? You’ve said before that apart from ds being non-verbal that your lives are pretty normal as ds eats well, happy to go out, go to restaurants, on holiday, bright etc. Apart from speech I’m not sure what improvements you were expecting?

He is still very hyper Open and things like not being able to leave him on his own in the house, impulsivity, like how I described in the hotel a couple of weeks ago, grabbing stuff, unable to sit and concentrate or occupy himself. Stuff like that in terms of presentation I would have expected would or could have got better. If anything that’s got worse.

He is not adverse to things and that is what I mean when I say our lives are ‘normal’ as yes we do all of those things, eat out, go out, go on hols etc. he is not having a meltdown/ crying etc so we do them. But he is impulsive/ has no grasp of social norms and cannot be left for a second whilst we are out doing normal things (my hotel example). So yes, things like that I had hoped school could work on or even use their skill to find something non destructive that will keep him occupied long enough for me to be able to go to the toilet without needing to watch him….

Also stuff like…. Teaching him in 3 months to be able to use even a couple of signs or pecs. I’ve worked really hard on some pecs (my 3.30 cut off!) which he’s using a little and school have remarked on this but it’s what I’ve taught him. Having even less toilet accidents. All things like that would make home life a lot easier.