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

@carriebradshawwithlessshoes Argh another with the gloves! Yes at least it's only a few weeks a year really. Just so much easier to be outside with her if possible and it does get in the way of that. Maybe fingerless..? Just for a bit of extra warmth? Will keep experimenting..

Yes I agree with you on the schooling. Even though the NL system is that the "cluster" of SEN school that includes autism is broad (serious behavioural problems / mental disorders - that is how they word it, not me), from what I could tell / what they described, a majority of DD's group is autistic. We did view another school which was pretty different in that respect, including e.g. visual impairments in the same cluster. But I think you're right in what you say. And yes, it wasn't working in MS nursery and at least she will be in one place now. I think all that we can do is hope it goes well and continue to try and do what we can at home too.

Very bad sleep weekend for her, up from 3am every night since Thurs. Sometimes went back down around 0530/6, sometimes now at all. Big meltdowns and really awful screaming. Pushing my phone at me as if she wanted a screen but then she didn't seem to. May try talking to a sleep coach (again) but I don't hold high hopes, I Think it's just her sensory profile and the process whilst we / her learn to regulate it a little.

You've all got me in Xmas tree mode! must get onto that this week.

Thanks for the mentions, given myself a kick up the arse and back in the ring. Re gloves ... don't know if they have a special name but they are like mittens but you can fold the finger part back? We had to hunt far and wide for them though! Miracle break through with hats - reversible fleece/velour bucket hat (omg it's awful 😞) hasn't been taken off all day - that includes lessons!!! Thank god I bought two of them!

Ahna I hope today goes well. Did the journalist say why his child was damaged?

It is tricky when they won’t keep gloves/scarf/hat on. We’ve had periods of that but atm ds will wear all of them. Maybe try mittens and gloves in different fabrics to see if there’s something that suits her.

And I hope you had a better night’s sleep last night, it’s so hard. So far this December is proving better than the last few for us. Really hoping it lasts 🤞

Thanks @openupmyeagereyes last night was actually better yes. However she was in an awful mood this morning even after the rest - sometimes there seems to be no pattern. She was happy enough being dropped at the new school, we sat there a bit but she was busy exploring so we slipped out. For December there will be 4 of them in the class (2 supervisors) and then I think up to 5 in January.

Yeah the journalist was very focused on having deprived his son of an education. He had moved him for a year to the US as a child (bilingual family) and had a great experience of the autism care / education there and credited that with the boy speaking English, but when he moved back he felt he went backwards. He also never picked up Dutch language. To be honest in my view that could say more about the bilingual thing than the schooling system but I know most don't agree with my reservations on bilingualism. I just have such a feeling that it is really making everything a ton harder for DD that's all.

Hope everyone has good days! The bucket hat sounds pretty cute @StarDog . Good idea on the fingerless fold back - I know what you mean - will have a Google for some...

Hope she goes on OK @Ahna65 !! Update us later x

Hope that she's having a good day Ahna

First day went ok thanks! Lots of discovering her new things to climb / corners to hide in I think. But seemingly all fairly smooth and had a few happy looking photos. They had a good amount of outdoor time despite the rain, think that will be good for her if it continues.

thanks for all the good wishes really appreciate that! Feel tentatively positive about the new start for now. Now just thing to figure out a nanny to cover some of the early finishes as I can’t do that every day with work (well maybe until January but not when things pick up again). But tough to figure out how to start with that- want someone with some autism experience not just a ‘girl next door’ type (also because I’d like some continuity not someone who is going off to uni or something). There are a few agencies for it but nothing in our area seemingly - they recommend to ask the council but I’m not optimistic they will be helpful.

That sounds great Ahna, well done DD!!!!!

Are there any SEN parent groups @Ahna65? It seems like somebody with an autistic sibling could be good - you don't need an "expert" in terms of training etc. but somebody who just understands the differences and will keep DD safe and help her get regulated if needed? We actually did have a "girl next door" type who helped us with holiday cover/babysitting and was amazing but she was a pretty special person I think (her Mum is a nanny, which is how I met her, and she has been around children from a very young age and was always wise beyond her years). How you find a person like that other than through blind luck is tricky (and of course there is always the risk that they go off to do something else - but I think that's always a risk with part-time roles even with NT kids, from what I've seen friends go through), but even something like Nextdoor/neighbourhood groups/parenting groups could be worth trying, as well as any childcare agencies?

Glad the first day went well anyway, and glad everybody is surviving the Christmas chaos! I can't believe how frantic I feel even though I'm only working about a day a week at the moment. I keep thinking of additional things I need to do faster than I can tick them off!

@LightTripper agree, experience via a sibling would be ideal. Just want the expectations to be OK and yes a bit of an understanding about regulation and meltdowns etc.

I have tried nextdoor in the past but probably worth a refresh. Not in any parents groups but will ask around at the school. I asked the house help lady if she knew of anything but she didn’t have any tips. Again not a very helpful visit from her - I get the sense she also doesn’t know if she can really help but I guess she has a period of being more in observation mode.

Seemingly an ok day for DD again but she has just made my face bleed (not necessarily deliberate but sharp nails and hysteria in a meltdown). This is a nearly every night thing now, these hour plus meltdowns and we have absolutely no clue how help her, it’s total hysteria and so distressing for her and us. Absolutely awful feel like we have utterly failed her tbh

Ahna you haven’t failed her, it’s so hard

OT Butterfly on IG did a talk on meltdowns not that long ago but it doesn’t seem to be available now, it might be worth going through her podcasts to see if there is anything relevant. Others can chip in if I’m wrong, but I’m not sure there’s much you can do once one has started other than try and keep them and yourselves safe (bear hug or similar if needed) and aim to stay calm and regulated yourself (easier said than done, I know). The key is to identify the triggers (also not always easy) and try to put measures in place to prevent them occurring. The rational brain shuts down when they’re happening so you can’t reason them out if it. I don’t know if singing a calming mantra (idea from Dr Becky’s deeply feeling kids chapter) would help, but might be worth a try.

Thanks @openupmyeagereyes will have an insta hunt. Just feel so defeated by it - last night was full meltdown from 12-1, and then again 2-4. Just awful. I guess it is maybe linked to new school but then last week was also nearly as bad. By the end of it she was clearly just desperate to fall asleep and found that hard to so. You’re right re letting it pass but I find it really hard to stay calm (don’t mean I get angry, but upset).

In which case these are maybe just about tiredness and resulting frustration? It’s hard to know, isn’t it. Did she go back to sleep between 1-2?

SO hard to know @openupmyeagereyes . Not sure if she actually slept then - I put music in her room so could be she was just calmed for a while by that. I do think there’s a tiredness link yes but I think in combination with other things that I’m yet to get to the bottom of…

feel increasingly in need of respite care (which new school offers) but also reluctant to do that when she’s in a patch of being likely to be distressed for hours. Bit of a catch 22 that.

Ahna have you ever spoken to an OT that specialises in sensory integration? I can’t help but think it would be beneficial. Have you done a sensory profile for her?

Ds upset before leaving school today. It all feels like rather an upward battle at the moment. Getting the full story is not easy.

Oh Ahna don't blame yourself. I think that this time of year can be so tricky for our kids and then with the new nursery as well things are bound to settle down. I have always been given the same advice as Open re what to do during a meltdown.

We had a huge success yesterday - a calm visit to the dentists. And even better as teeth brushing is a battleground with DS his teeth are fine

This morning however, I read on the class WhatsApp that choir (which DS is in) are doing a little performance for parents this afternoon. I have teaching this afternoon so I can't go but I probably could have arranged cover if I had had more than a few hours notice. I explained to DS that I couldn't go and he started to cry. So I dropped him off feeling guilty - even though I know it's not my fault. Choir includes kids from yrs4-6 and I think the children are expected to pass messages on.

To make matters worse today was DD's nativity and I had arranged time off for that - DD kept saying to DS 'Mummy is coming to see me'. DD seemed to thoroughly enjoy the nativity. She refused to wear her costume, was jumping about on the stage, shouting to her friends and bounced down the aisle to see me repeatedly. I did get a bit of a 'here we go again' feeling.

dimples congrats on a positive dentist experience, always a relief. I do think it’s poor for them not to tell parents about the choir performance, you (clearly) can’t rely on dc that age.

Ahna I’ve been mulling over your situation but no words of wisdom really. The fact that it’s the middle of the night makes it infinitely harder for you, obviously. All I can say is don’t take the meltdowns personally, it’s not anything you’ve done. Also, don’t catastrophise. It doesn’t mean she’s always going to be like this, tell yourself it will pass

Sorry meant to post again but got distracted!

Thank you for all the nice messages about my mum. It really is rubbish being an adult sometimes!

Ahna I agree with Open and dimples, when it gets to that stage you just have to ride it out. I always used to repeat in my head 'this too shall pass'!
Like I said your dd sounds so much like my ds at that age. It just sort of happened that at some point almost without us noticing it started to get easier and i put most of that down to ds, who is an amazing little human being. It is so so hard though when you're in it.

Dimples I'm not sure that any child that age would tell you what's happening. Rubbish of the school to not send a reminder! Well done on the dentist.

Open sorry it's difficult right now. We need extra bribes to get ds in every day. This time of year can be so demoralising.

School sent a message out at about midday apologising about the lack of invites. As it turned out my sister was there (in her work capacity) and said that he didn't sing at all.

I hope that you have a more peaceful night Ahna

We've almost made it to the weekend. It was snowing here earlier!

dimples do you still have snow? None here but v cold, obvs.

Ds did not go to school today, mainly due to yesterday I think. Hopefully he goes Monday, we will see. Tues & Wed he will be keen due to activities happening on those days.

Thanks everyone for the thoughts. Thursday night wasn’t as awful, but last night just terrible. That was after a day off with me with plenty of outdoor time together but nothing extreme. The OT at her SEN nursery did make a sensory profile a while back which was in line with what we already knew really but we haven’t taken it to the next step with any sort of specific sensory diet, maybe we should

i am also wondering about revisiting melatonin. The doctor recommended very low dose and also said giving it 30min before bedtime but I know the dose can be higher it’s just not recommended here. Also wondering if any reason not to give it her at eg 1am if she wakes. I know it’s not instant effect but she’s usually still wide awake 3 or 4 hours after waking. But then at the same time it seemed to make everything worse last time and I did have the sense it didn’t agree w her somehow. DH is talking about us looking to rent a flat nearby to take it in turns but that sounds (1) very bleak and (2) unaffordable

super cold here, not sure we will get outside this morning!

No more snow Open but what we have has frozen in place. We went to our local outdoor museum yesterday evening and it was picturesque. We had expected a v brief visit, basically grotto visit, tram ride then home but we were there for nearly 4 hours and didn't get home til 10pm! The children were fabulous. Today we went to see a screening of the Snowman accompanied by a youth orchestra and choir. That was great too - DS loved it, DD was a bit challenging! Definitely a quiet day at home tomorrow. DS and I are excited as our new TV is coming- a few days without telly has been trying

Ahna I think that it makes a lot of sense to investigate other ways to improve sleep. DS enjoys deep pressure before bed so I do things like rolling him up in a duvet to make a 'sausage roll' and rolling a big exercise ball over him whilst he lies on the floor. I think the sensory stuff is quite individual though and some of it has been a lot of trial and error, eg DS hates weighted blankets toys etc