Thread 13: autism and any other additional needs A/W ‘23

[openupmyeagereyes]

Thread 13.

For parents / carers of disabled children, autism, adhd, and all other related neurological conditions. Most of us have children in primary school. But everybody welcome!

Chatting about anything and everything related to SN!

Links to previous threads.

Thread 12
https://www.mumsnet.com/talk/special_needs/4816294-thread-12-autism-and-any-other-additional-needs?page=1

Thread 11
https://www.mumsnet.com/talk/special_needs/4711291-primary-school-auties-11-2023-is-here 

Thread 10
https://www.mumsnet.com/talk/special_needs/4592899-primary-school-auties-10-summer-and-beyond-2022?page=1

Thread 9
https://www.mumsnet.com/talk/special_needs/4502988-Primary-school-auties-thread-9-spring-summer-2022

Thread 8
https://www.mumsnet.com/talk/special_needs/4422100-Primary-school-auties-step-into-Christmas-and-the-New-Year-thread-8

Thread 7
https://www.mumsnet.com/talk/special_needs/4303826-Primary-school-auties-summer-and-the-new-academic-year-thread-7

Thread 6
https://www.mumsnet.com/talk/special_needs/4166833-Primary-school-auties-spring-2021-and-beyond-thread-6

Thread 5
https://www.mumsnet.com/talk/special_needs/3953023-Primary-school-auties-summer-and-beyond-thread-5?page=36&reply=104240251

Thread 4
https://www.mumsnet.com/talk/special_needs/3748449-Primary-school-Auties-into-2020-thread-4

Thread 3
https://www.mumsnet.com/talk/special_needs/3628263-Auties-transition-to-Year-1-thread-3

Thread 2
https://www.mumsnet.com/talk/special_needs/3451020-Reception-auties-2018-19-thread-2

Thread 1
https://www.mumsnet.com/talk/special_needs/3080753-DS-with-ASD-starting-school-Sept-2018-I-am-feeling-overwhelmed

Belated happy birthday @carriebradshawwithlessshoes champagne sounds great hope you enjoy it at a better moment and sorry it’s a tough time atm.

re the respite - no, sleep is not the only reason although a big one. Although on melatonin we have already tried that with DD and it didn’t help the sleeping through. There’s no way she would swallow something whole for the slow release version either. But no it’s not only the sleep but the intensity of the evenings with her too, and the general lack of headspace for ourselves or for DD2, which I think would be helped by a bit of time to reset. It’s increasingly difficult to do stuff with both DDs together. But at the same time I wouldn’t say we are at actual breaking point - ask me tmro might say different.. but I would say long term without some regular respite there’s a risk for both DH and I mental health getting worse, probably our relationship becoming more strained, impact on DD2 being greater, etc. But of course I don’t know how much it would help and if my guilt / feelings about it would counteract the benefits. If more family help was an option we’d go for that but MIL is really too old to be doing anymore overnights now that DD1 is ever bigger and so more of a physical challenge.

@dimples76 .. July - wow. That sucks, I’m not surprised you could cry. Rubbish.

dimples July is awful and, what, a year after your appeal? A whole school year will have passed in that time. I’m really sorry.

Sorry your birthday was spoiled Carrie. In mine and my sister's (with her 3 autistic kids) they never seem to cope well with it being our birthdays. Especially with my sister - she generally only has a good bday if she is not with her children! I went to London with my sister (childfree) this year for my bday and it was bliss! I agree that with Open that there's always a reason, it's just that they might not be able to articulate it/know what it is themselves and we might regard it as unreasonable grounds for that reaction.

Open, re your comment on reasons, don’t you think the ‘reason’ may just be the brain being wired in a ND fashion? So to use another example, someone who has depression but has no reason to be depressed is depressed because of a chemical brain imbalance or whatever you want to say. So you could take them out on a spectacular day, they are given everything they want, but they experience depressive thoughts.

I suppose what I’m saying is despite all support, help, tactics, therapies, love and the rest is how DS behaves really out of our control because of his brain constitution. That’s really scary if so.

I’m not sure I’d say negative behaviours i would say inappropriate or not the norm behaviours or just unfathomable ones. It can include as is happening a lot at the mo laughing or over excitedness (the latter a lot) for no reason, for eg when just walking down the street (and it’s not a gelastic seizure he’s fully with it). Or he will often do stuff like go on his slide, he’s happy, enjoying himself, doing what he wants but then just randomly starts crying. Does anyone else have this??!

dimples that is a long wait, just ridiculous!!

Thanks Open and Ahna. I am so frustrated. My doctoral thesis is also due to be submitted in July. It reminds me of the time that I told DS's therapist that 'Surface Pressure' from Encanto summed up my current life. To make things worse, as she didn't know the song I sang it to her! I have DS's transition to secondary EHCP review on Friday. The secondary school should be named by 15th February. I have all my fingers and toes crossed that they name an appropriate school but as this is my 3rd EHCP appeal I have little confidence in the LA. After initially refusing her help I have asked my sister to come as I am rather tired and emotional this week.

Good plan to ask sister @dimples76 must ask for help if it’s there.

Wish you were nearer Dimples you could could come and share my champagne (goes for all of you).

We have just watched Encanto so I can relate! I cried near the end, proper sobs. We tried out this new rolling pin with a pattern on it I got online...not great, but the biscuits were nice!
I think behaviour always has a reason too, it just might be a neurodiverse reason. E.g. I've realised lately that I like singing the same riff from a song or saying a certain word over and over again when I'm doing something repetitive, as DS does (he got stuck on Happy New Year as a phrase last week). I think the reason for that is, it's pleasurable, but a NT mind might struggle to see that. The over3xcitement we have too with DS but I prefer to reframe it as disregulation because I find it easier to be calm and empathise then.
Maybe go away for your bday @carriebradshawwithlessshoes or near it? I went away on my own for the weekend in Feb this year and it was weird but bliss!

we might regard it as unreasonable grounds for that reaction.

You’re so right dimples.

carrie if you’re simply comparing NT behaviour to ND behaviour (like for example stimming) then, yes you can say it’s because of wiring differences. Each child, ND or NT has their own individual baseline, don’t they. How they behave when they’re content, regulated, not tired or hungry etc. So when they act in a way that’s not in line with that then there’s likely to be an underlying reason: physical, emotional, anxiety, sensory, testing boundaries, desire for independence, whatever it may be.

Also I don’t think clinical depression is that simple. It’s not always about the here and now, though it can be of course, but often it’s about unaddressed issues from the past.

@Ahna65 sorry just to pick up on the melatonin point when you said it didn’t work didn’t she only try 1mg? I’m not even sure that’s a therapeutic dose, it may be she needs (for it to work, plucking random figure out of the air) 4 or 5mg potentially plus another sleep med such as those my and Dannis DC take .

@carriebradshawwithlessshoes it was a low dose (in line w doctor recommendation) but it did knock her out pretty quickly - like we could really see the impact in terms of getting to sleep. So I wouldn’t want to do loads more given that - also doctor (and many others anecdotally) did not expect it to fix the through the night sleep.

Dimples I'm not surprised you're emotional. What a nightmare! Good luck with the secondary review, I've got everything crossed for you.

I think with the behaviour Carrie that my ds doesn't necessarily think in order. Naoki Higadashi explains it really nicely in his books. So maybe the thing that has caused ds to cry 'out of nowhere' was actually something that happened at a different time? Just a thought. But like others say there's always a reason for it, just not always an obvious one. We still have no clue what it was about school that made ds not want to go in and we may never know. Or more likely in a few years time he'll tell me why completely out of the blue!
Oh and belated happy birthday!

liv that’s definitely the case for my ds too. He will randomly mention things that happened some time ago. I say ‘randomly’, there’s probably something that’s triggered the association in his head but it’s not always obvious.

And yes to finding out reasons later. We had a framed print up in and one day years ago ds took a complete dislike to it and we had to take it down and hide it, we didn’t know why. I didn’t get rid of it because I really liked it and a few months ago I showed it to him. He said he’d had a dream that something in it talked to him. He’s fine with it again and it’s back on the wall now.

Thanks, yes it’s a good point. Open, so glad you kept the picture 🤣

Happy birthday for the other day Carrie. X

Open similar thing, ds tv on his wall had to be covered with a blanket for years as he was terrified of it, later when he could talk and explain he said during the night a black baby climbed out and kicked him and hit him with a crow bar, the black baby had an orange pushchair apparently,

he obviously doesn’t understand dreams aren’t reality, and it’s tricky for him to understand this sort of thing. So that’s why he’d been frightened of his tv. He’s ok with it now.

How’s everyone’s half terms?

Ds has had a nice week overall. Nice and regulated, not interested in playing with his tablet at all, so he’s mainly been building Lego, and we’ve been on a few walks. (Hate this shitty weather as we can’t get to the park or beach) but considering we’ve been limited in what we can do, he’s been pleasant. He’s been mostly in his ‘high functioning’ mood as I call it.

He has his once a year autism appointment this morning. Then he’s told me there is a maze he wants to go to, apparently it’s local at the beach, I haven’t a clue where it is and I’m fairly sure it does not exist, but after his appointment he’s going to give me the directions! 🤣

He’s told me I’m to wait at the entrance and he’s going ‘maze exploring’ by himself. Yes of course you are ds.

Then we have 2 pumpkins to carve when we get home.

I obviously banned his iPad 2/3 weeks ago, as it was causing a lot of hassle, I replaced it with the Amazon tablet and he’s not fussed by it, he maybe watches clangers on the CBeebies channel on it for half an hour a day and plays tt rockstars for about the same, but mostly he’s playing with toys and drawing when at home etc, if I ask him to have his tablet when I’m cooking tea and need him sat down for instance, he’s saying no he doesn’t like it it’s boring etc.

So I’m wondering if his more relaxed mood this week is because he’s been on his tablet much less. (1 hour a day max of usage this week, opposed to whenever he wanted previously) Or the no stress of school, or a combination? I think back to previous school holidays and he’s not been this chilled, so I’m leaning more towards the much less iPad time. Plus a sprinkle of less stress due to no school. Anyway whatever the reason, I hope it continues!

I’ll explain further.

Usually we will have the very occasional day ds is easier to manage, by very occasional, I mean not very often at all. perhaps once or twice a month max.

Me and dh have both agreed in the week he’s been off, say out of the last 6 days we’ve had 4 decent days. Of those ‘decent’ days we’ve still had certain challenges but I fully expect that due to autism / adhd.

I’m comparing to usual if that makes sense. For example he hasn’t hit me since Sunday, (that sounds so bad written down, like that’s something to be proud of) but if we say over the last 3 months he’s hit me almost every day at least for one reason or another. Then going 5 days without hitting me at all is an achievement in itself. Then other things, he’s been less argumentative to a degree and generally more pleasant to be around.

I know this sounds bad but I like to be honest. Sometimes ds is utterly unbearable to be around and I don’t enjoy him being in my company, he will argue the toss about anything and not leave me alone, constantly pecking at my head. We’ve had much less of that this week..

danni you’re probably right that it’s the lack of screen time. I’m impressed you’ve managed to get there. Ds would literally be on it all day if allowed, it’s such a battle.

Fairly quiet here. Ds did not want to do one of the outings we planned with friends. I’m going to take him swimming to a different pool today as his lesson has been cancelled and then maybe McDonald’s.

What have you decided about school next week?

Ds has been the same regarding his iPad for the past few years, it has caused many battles, he wanted it all the time. It was good for him to have when I had bits to do in the house and needed him sat, but it came with lots of other issues. I’m pleased he’s having less time. Although I have less peace, but I can’t have it both ways.

He’s going to go to school as usual next week. His teacher always phones after a half term, they ring all the parents for a catch up within the first couple of days of a new term. So I will discuss with her the classroom environment / the children ds is being paired with and anything else at that call. I would like to know what they have planned for him for the future. I’m also going to have to really point out the obvious (which surprises me that I’m having to spell it out since they are so ‘trained’) that pairing ds with certain children is going to cause behavioural issues in itself. They know ds personality and surely they must realise this. They are literally creating problems for themselves.

His send caseworker was ringing me at 12 yesterday, she failed to phone. I made sure I was home in time aswell so I could talk undistracted. They are such shits. She was only ringing for an update on how ds settled with the transport, but I was also going to talk to her about the above, and see what she suggested, but she clearly can’t be bothered.

Sounds like a good week @danni0509 , nice and wholesome !

wnat does the once a year autism assessment entail?

@Ahna65 Just to check his weight and height, review any medications (they only prescribe his melatonin from there) see how he’s getting on, that sort of thing.

Ah ok @danni0509 . With a paediatrician? Hope it goes well.

not much news here, also bad weather. DD2 bday at the weekend, bit of a balance between making it fun and festive for her but not too intense for DD1. Will just be around home so should be ok. At least she won’t be jealous of presents as she has no real interest in that type of thing !

settling into the new job more, although a couple of colleagues have irritated me with comments about DD when I’ve shared that she’s autistic (the usual - ‘can she be cured?’ ‘Will she have to go into care?’ ‘’wouldn’t it be best for her if you weren’t working full time?’). I know people don’t mean things badly but I struggle not to get annoyed.