Primary school auties step into Christmas and the New Year - thread 8

[openupmyeagereyes]

New thread.

This is the continuation of the thread for parents / carers of autistic children / children with additional needs. Most of us are parents of children in year 1 / year 2.

Links to old threads

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

I am sure that someone far more knowledgeable than me can answer that Open esp when I don’t have a child taking that medication. My understanding is that yes, it controls the response BUT should be used alongside always the usual therapies and strategies to work on the anxiety. My understanding is it’s really a last resort when behaviour is so unmanageable for the child and family and strategies to work on the anxiety employed by home and school are not when used alone effective.

I wonder then if they try anti-anxiety medication first then. I do understand, of course, that some situations are so extreme and need a stronger approach.

Hmm not sure. Is there a separate class of anxiety meds? I really don’t know!

Yes it’s very helpful for anxiety open

Adhd stimulant medication can make anxiety worse. Hence why I said I want to try a different adhd medication to start with.

But really, if I think about it, I don’t think his anxiety is any worse than it was prior to starting adhd meds, so it hasn’t made it worse, it’s just no better.

My problem is. When you take all these medications, as young as ds is, you have no were left to turn if things get any worse. (As he’s getting older, more challenges, teenage years etc) so I would prefer to try other options available first; such as starting with his adhd meds and trialling others etc etc.

I would rather have the ‘big guns’ to fall back on as a last resort. Crisis management situation! I don’t feel we are quite there yet. I’m not saying i won’t give ds it, but I’d rather try other available routes first than giving in for an immediate quiet life.

I need to try get his adhd meds made in liquid form too, that’s my next task. I know it can be done, it just costs more and takes longer to be ordered in and pain in the area getting the dr to agree because of the £, but I’m sure I’ll bend his arm.

School have a long term issue with him drinking it all depending what mood he’s in, so he’s a bit hit and miss, liquid will be no problem, he takes calpol, melatonin etc no issues whatsoever!

Pain in the arse* (not area! Stupid phone!)

open sorry I missed your post regarding anti anxiety medication. Yes they can prescribe this type for anxiety in ds age group. It has to be severe anxiety (which it is) and all other avenues must of been exhausted first. (Not so sure on this part, I would think they would try another adhd med first then after we can safely tick that part off too)

I just need to speak to CAMHS next month and discuss what’s the best options available.

danni I think it makes sense to get him settled on the ADHD meds first, especially if they may help. Your situation sounds very difficult though.

It does sound very difficult @danni0509. I can understand giving in on certain things where it's easy to accommodate - but obviously you cannot stop breathing or talking to DH so in the long term DS will just have to find ways to manage that! Do you think it's a sound sensitivity thing (in which case could things like ear defenders work) or more that he is not in control/can't predict what will be said etc?

I remember desperately not wanting my Mum to talk to strangers when I was young (not with the same response - I would just shut down or cry) and I think it was much more about the latter. I felt totally ashamed and just overwhelmed with cringe even if my Mum just e.g. asked in a shop where the loo was or the cafe or something like that, or did they have something in a different size. I found it absolutely excruciating/unbearable. I'll still avoid that kind of interaction as an adult if I can though I am able to do it obvs. It's hard to really rationalise why it's so bad though, to try to think through what would help DS.

It does sound like meds might have to be part of the answer, if it can help tackle the kind of "chemical" part of the overwhelm if that makes sense. But I have no idea how they actually work.

Tricky time getting DD into school this morning. She really didn't want to go. A couple of little things went wrong on the trip in but only small so she would normally handle them fine. Anyway, her teacher says she was fine once she was in!

light it’s definitely the latter, the control aspect, he likes me to say things he tells me to, so he says mummy say to me ‘x y z’ he does that a lot. He likes to know what’s coming at all times, but of course the world doesn’t work like that and he needs to learn to manage these things, I can adapt a lot for him, but not everything! x

light pleased your dd settled eventually.

open how’s school gone this past couple of days?

I think you will find the book interesting Danni when it lands. There’s a chapter on co existing conditions with adhd including anxiety and another on how meds for adhd can help other things and vice versa. It’s quite readable.

Thanks carrie x

DS's appointment didn't start well today and I worried that they wouldn't be able to do the EEG but eventually he settled on my knee and he had 3 absences during the test so hopefully we can start medicine soon. When the clinician was asking about DS's medical history it really hit me how much he has to contend with. It was also strange as in our tour of hospitals of the North East this was one we hadn't had an appointment at before but DS was born there. DS had actually remembered that and recognised the building from a photo in his life story book - his memory can be incredible.

Aw well done to DS Dimples x

Glad EEG went well in the end dimples and that they were able to see the episodes.

danni ds has had a good week. He's been in most days for around 90 mins I think, except for Wed which was three hours. He even did a bit of maths with his teacher yesterday when he didn't go to forest school.

Light glad dd had a good morning in the end.

We just popped to the garden centre to get out and ds chose an orchard toys board game from the toy section. This is quite big for him. He's much less obsessive about new toys and there have been times where he hasn't wanted to get anything at all or has chosen something quite small, which is real progress as our house is so full of tat!

Can I ask another random qu… esp to those with Dc at SS. Do your children get asked to birthday parties of peers, do they go???

We have a flurry at the moment. I say no to all. Mostly because if we went to a soft play or whatever I’m sure DS would love but he wouldn’t comply with instructions, may not join in, would need constant supervision etc. I know I could stay but I don’t want to be the one parent shadowing when all others are sitting drinking coffee or most probably not there at all. It’s not that I think DS would be anxious , not at all, but he would be off causing havoc, doing his own thing. I would be on top of him and conscious that other parents would be watching all that.

What happens for you guys?? Just wonder if in a SS there are more children like DS and so parties are different or maybe not at all? Read the WhatsApp group messages all pm and photos of oh, it was fabulous!!! Little Jonny loved it! I felt guilty then… whilst knowing that’s daft and it would not be worth the stress….

Carrie I took DS (who is still in mainstream) to a party today at a trampolining park. He enjoyed himself. He did spend quite a lot of time by himself but he also joined in playing tig, singing happy birthday etc. Most of the parents stayed today (it was 30 mins drive for most of us) although quite a few take it in turns with each other and bring a car load of kids. I think I'm lucky that DS's classmates mostly seem to get DS and accept him as he is and their parents know us and are supportive. Birthday girl's Mum bought me a coffee and told me she would keep an eye on DS whilst I had a sit down. DS is v bad at trying to access all areas at the moment, at the party tea he kept trying to get into the kitchen but other than that he was quite easy to manage.

At mainstream, he was rarely invited bless him. Now, he goes along and his friends are all quite similar in their challenges, e.g. listening to instructions and wandering off! All the parents stay despite ages because the kids all need that level of support.
DS only went to sleep 30 mins ago!! He messes about on purpose as he finds it do hard to sleep. We are trying the sleep fairy tomorrow...DS has a letter saying how grown up he is now so its time for the next level of bedtime where he gets to say goodnight to the grown ups! He has 3 passes to call us but he has to stay in bed. Otherwise no tick so no toy at the weekend...wish us luck!!

Good luck Magrat, I hope it works for you 🤞

carrie we haven’t been there that long and no birthday invites yet. I’m hoping to have a mid year party for ds as he’s missed so many so will update on that when it happens. In his ms school we had a few invites and I just put my big girl pants on and took him if it was something he would enjoy. Yes he needed more supervision and we sometimes left early if he’d had enough but that was ok. If it was something I know he wouldn’t like, like a pizza making party, then I declined.

Ds never got invited to parties in mainstream and he doesn’t get invited in special school either. He only got 2 Xmas cards from his special school despite me sending them on ds behalf. Even if the kids can’t write (which I think most can) I don’t think it would hurt the parents to make an effort to write one and return one back..

Ds has been awake since 3, again.

I bought a couple more books from Amazon last night.

Avoiding anxiety in autistic children & the declarative language handbook. I’m going to try work my way through them this week whilst ds is at school.

Ugh danni, sympathies. We’ve had 4:45 for last two days which is a relief. Probably due another early one tomorrow…

From what I’ve read open it’s rephrasing how you speak to them, it helps with anxiety / pda / autism etc. Can help with them discussing their feelings and other things when you model it for them.

80% of the language you use should be declarative and 20% imperative language, can help reduce meltdowns and refusal etc.

I do a bit of it naturally, but deffo not 80%, so I thought I’d give it a try, why not ive tried most other things 🤣