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 @ahna68 I meant that the people complaining are being judgy! Hope you got some rest in today.

Thanks Uno though we have been here before. It doesn’t take much for a setback, unfortunately.

Thanks, yes complaining annoying but I also wonder what I would have done in another life - I guess not complain bc what do you expect parents to do but I doubt I would have had a ton of empathy if it meant my holiday sleep ruined. Anyhow, glad to be home

have followed up w GP and for them melatonin was the last suggestion really. They are now sort of going backwards to suggesting sleep trainers etc but I know that we have tried everything in that respect and it’s a bit frustrating when people think There might be a quick fix. Yesterday she slept ok but only bc she had a really bad fever - she is so prone to them it seems.

hope those of you with half term have good weeks. Pumpkin picking sounds great!

Ahna have you tried over the counter antihistamines? You’d need the drousy kind. I think this is the medication that carrie mentioned, and that danni’s ds is also prescribed. Worth a try? Is melatonin available over the counter in NL? If so I would trial a larger dose.

Ahna that sounds exhausting, hope that you find something that works.

Uno how have you narrower it down to leaf mould?

Open enjoy your days out

Hope everyone's half terms are going well. I haven't really planned anything due to DN. He came home again on Saturday but has an out patients appointment today. Consultant says surviving each of those attacks was against the odds and his kidneys have been damaged. So it's all rather scary. Hope that they can identify triggers and that it's something easy enough to avoid...air quality is not good where we live due to traffic pollution.

We went to a stay and play for SEN children and families on Sunday. There were only 3 other families there but unfortunately one of the little ones kept grabbing/nipping everyone- looked like he was just trying to connect. DS was v calm about it (it did really hurt) but DD was distraught so we had to leave early. DS is going to SEN holiday club this morning at the same place, really hoping the other boy is not there

Oh dimples I’m so sorry about your dn, how absolutely terrible. Awful that these things can just happen out of the blue.

Yes dimples, hope he’s ok. I thought asthma was something that you either had in v early childhood or not at all? Obviously I’m wrong.

ahna, think the melatonin is worth revisiting. In terms of slow release, the 1mg capsules are almost the size of a sugar grain, I’m sure she could swallow disguised in a bit of something she likes. Yes, as open says we tried antihistamines, the current one is prescription but phenergan (sp) is not. We tried that for a while. Sorry your break away was stressful. Did/ could you have taken DD out in the night (or should I say DH??). We have been in that position various times and my stress levels can’t take it, I do insist DH drives DS out after only a few minutes of meltdown, he claims he has seen parts of the world at times no one else has!!!! 🤣.not because I’m bothered about other people but I would just find it incredibly stressful being up and knowing he was waking other people up too. Also, we often find a drive would calm him down, so on returning he may well be ready to go back to sleep. It sort of breaks the pattern??

all ok here, it was my birthday Sunday so we all had a night away which was with the usual trials and tribulations but overall ok. Pool for the kids etc etc.

hope everyone else is well!!!

Belated happy birthday carrie

Our 2mg slow release tablets are about the size of a tic-tac, so quite a bit larger than yours! Thankfully ds is great at taking them.

Yes, belated happy birthday to you Carrie

We have had a good day and after going swimming this afternoon both children will be ready for an early night. We are currently watching Postman Pat and all is peaceful for a little while... Saw my DN earlier and all his obs were fine at the hospital earlier. He is back on Friday for allergy testing and on Monday for follow up with consultant. The steroids are making him even more hyper. He is autistic and fairly limited in what foods he will eat and also normally only eats small amounts but is eating anything and everything at the moment. For breakfast (at his request) he had chicken and pancakes.

Open the 2mg ones are bigger the 1mg tiny. I shall try and send a pic…. He takes 3mg so one of each

2mg v 1mg

Super interesting to see the size! Thanks @carriebradshawwithlessshoes . had assumed they would be normal pill size but yes the small one could be doable.. would have to order online as not sold here. Will have a think.

yes could also try upping dosage more but when we tried increasing in line with doctor instructions it seemed to make things even worse with the waking. We were still a way off the max recommended for her age / size but somehow I didn’t feel it was going well with her, mahbe she was feeling ill with it, I don’t know. Guesswork really.

haven’t tried anti histamines so that could be something to explore. Recommended to take them on an ongoing basis though? Feels odd but then so does melatonin, I guess the benefits of sleep outweigh a lot

@dimples76 glad DN ok for now. What a worry.

@carriebradshawwithlessshoes happy birthday!

Ooooo Open I’ve just been reading your comments on another thread about toys/ games that keep attention/ neural loop/ why we pick up our phone so much etc etc. lightbulb moment re DS, any games/ toy suggestions would be hugely appreciated, that’s just what DS needs. Ha, those tests i mentioned also show he has rock bottom dopamine levels funnily. You are very well read on these things I must say!

carrie maybe it wasn’t clear from my post but I was saying it’s a bad thing not a good one. Most video games are set up to work like this, has he played any?

My mistake Open, yes I appreciate you were saying that but didn’t you recommend some toy/ real game alternatives? Sorry if I’m confused!! As you know DS has no interest or attention for toys, I often wonder if I could break the back of that with something alluring?! 🤣

carrie I suggested some stem type toys like cogs and gears as the OP said her ds liked puzzles and she was looking at educational online games. Your ds is a harder nut to crack I think. What does he enjoy and is he motivated by? There must be something that you can hook into?

Is he reading? To himself, obvs, since he’s NV.

He will not do anything spontaneously Open. Everything I have to initiate and make him sit down with it. Then he will usually indulge me by doing for a few minutes whatever it is I’ve asked before edging away and then crying if I ask him to come back. He’s a nightmare. I think part of it is he doesn’t understand the point… so we had a bit of success with one of those mini you know, football games like you see in pubs with the sticks where you twist the stick and that controls the players which kick the ball and you have to get into the goals. So the average child would understand goals, winning, trying to score most points. dS just sees it as twisting a stick, how boring is that? Just like pushing a car is like pushing a bit of plastic across the floor, I can see him thinking what’s the point of this? If you join him and race he’s like, well I’m not bothered if your bit of plastic is in front of my bit of plastic.

I just don’t know. I think it would have to be something that gives him some physical/ sensory/ enjoyment, that dopamine hit that you mention. But I’ve no idea what! I did think about you know those old fashioned sweet machines where you can twist a thing and a sweet comes out, or put in a coin and get a sweet? A poor idea I know but he will do that because of the physical enjoyment/ pleasure of eating the sweet st the end.

or maybe I just give up!!! In the past therapists have wheeled out asd toys too, so flashing, spinning things…no interest!

So on a holiday day when you had no plans to go out, and with no prompting from you, what would he choose to do?

Sensory play is one thing to look at, what sort of things does he seek or avoid? You might need a bit of trial and error here depending on what info you got from your old OT. He likes the trampoline? Try and add variation with a ball, or balls, on there with him. Get him a mini-tramp for inside and sing songs or recite maths facts as he jumps. There’s endless ideas but it’s a very personal thing to your ds.

Does he like music? Listening, making it?

You said he’s good at maths I think? Does he like maths games, physical or electronic? What about kid’s picture books that explain maths concepts? We’ve got Sir Cumference ones, how much is a million, 365 penguins, the lion’s share etc.

You mentioned he likes taking things apart (or is it just destroying things?). Can you get him some mini-engineer take-apart/build toys? What about sitting down with him with some real tools and taking apart a broken toy or radio or something?

if ‘play’ is not his thing, will he do household tasks with you like sorting laundry etc. things that do have a ‘point’? These sorts of things are key co-regulation activities if you do them in the right way.

I think the key is trying to leverage what he’s already interested in in a new, out of the box way, rather than trying to get him to do something he’s not interested in. Also starting small and building, even if it’s a minute of attention at a time. Then adding variation. If giving up was not an option, what would you do?

Thanks for this open, some really good ideas in there. But re your first para, we go out, a lot to avoid this otherwise it’s a nightmare. What would he do, well just thinking back to last Sunday night away…

wander around the apartment grabbing things, seeking out food within reach and eating it, wandering into the bathroom and trying to get in and turn on the shower/ bath, putting random things in his mouth that shouldn’t be there, trying to get out of the front door, climbing on the bed/ chairs, finding something he can pull around crashing into everything (like the ironing board), trying to open every door/ cupboard, grabbing the kettle, the cups, every cord he can find. I repeat, we go out! Can’t engage himself for 5 mins. I do wish he would sit with an iPad!!!!

That's a tricky one @carriebradshawwithlessshoes . How about something like a punchbag (though that needs a lot of space really) or one of those velcro dart boards? He might like the throwing motion and they make a nice "chonk" noise when the dart hits ... and if he's into numbers he can add up the totals, try to beat his high score, etc. - I don't know if that might appeal to him? You can also get gym equipment like hanging bars for indoors, though I don't know how safe it would be - depending on whether he would use it safely?

@dimples76 so sorry to hear the news about your DN that must be terrifying. I really hope the doctors can find a way to keep it under control - and glad he has appointments coming up to try to find out more. I know it's a huge thing to even consider but is there any chance they could move to somewhere with better air? It just seems horrific that our air quality is so bad despite the rise of electric cars and clean technologies - we can't go on like this!

Is that indicative of how he is normally at home?

If yes, then off the top of my head:

• water play - either at a table or tuff tray outside or in the bath. Washing dirty toys. Throwing wet sponges at a pyramid of plastic cups or other objects etc.
• getting a set of padlocks for him to practice opening and closing. Progress to using them to trap items inside and he has to find the keys to release them. Use hotter/colder instructions for finding them. We’ve also got some old Yale barrel locks and keys that we use for that sort of thing.
• hiding something (sweet) inside a kitchen cupboard door and trying to get him to guess which cupboard, finding it by trial and error. Really over exaggerate your reactions.
• put some different sweet items in bags or boxes and print off some pictures of them. Get him to feel what they are and point out the right picture, or get him to do a blindfolded taste test and point them out afterwards.

It’s not what the activity is, it’s about trying to build some joint attention and seeing people as interesting to engage with. But you need to start small and have low expectations to start with. I think avoiding it by taking him out all the time may not help matters long term, though I’m sure you’re not out of the house all the time. Also, he may mature in, say, 6 months time and engage better then. It’s impossible to say.

Thanks both. Yes this is how he is at home unless like today I’ve knackered him out on a 3 hour walk in which case he’s happy to slump in front of the tv.

aside from anything academic AIBU to think that the SS should be working on things to improve this sort of behaviour? I had hoped so but they haven’t suggested anything yet aside from OT. He really is exhausting. I hear myself saying , then shouting, then often screaming NO x!!! A million times a day….

What I find mad about DSs development is when all the other kids were being little shits at around 2, he would sit there smoking totally oblivious to his environment. I could have put an open bottle of bleach in front of him and he wouldn’t have noticed it, let alone touched it.

But now…..

Yeah, funnily Open at home he will seek people out and often just want to as dimples said recently ‘connect’ with them by eye contact, touching them, vocalising etc. But not in any sort of meaningful/ DS initiated interaction with toys or an activity iyswim.

Smoking????? 🤣🤣🤣🤣🤣🙄🙄🙄🙄🙄. Smiling!!!!!

What makes you think they aren’t working on things to improve that sort of behaviour?

Great that your ds will go out for a walk. I can barely get mine out in the garden at the moment!