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

Totally agree @openupmyeagereyes

Haha at the spanx, never again, I wore some once and almost passed out!!!

Thanks all ! Yes we have actually ordered a mini indoor trampoline, think that will be good for her. Wobble board sounds like one for the list but maybe when she's slightly bigger @UnoQueenie . Also the problem is DD2 wanting to play with any of these new things too! Hard to keep her away and she's a bit smaller so not always suitable. Would be great to have a dedicated room / space only for DD1 but not really realistic in current home.

Funny you say that @openupmyeagereyes as she spends sooo much time upside down, hanging off things. She just seems happier upside down! She also loves lying on hard things - window sills, tree trunks etc - I guess that's the deep pressure type thing. So in a way I do feel she's sort of learning what she needs but we do definitely need to help her more. Swing would be good but not sure if we have space indoors.

@carriebradshawwithlessshoes Yes I do indeed think there's a frustration element with the communication (lack of). I think it's very much a combination of sensory / sleep deprivation / frustration re communication. She won't do PECs or hand over hand. She wouldn't tend to bring us a cup or anything (if her water cup was empty she would just scream and cry, unlike DD2 who would bring it) but I have noticed her bringing the remote (probably a sign that she watches too much Peppa, but also a sign of 'communication' so we end up putting it on to reinforce that..). I guess the remote example shows it has to be something that she is really keen on to motivate her to try and communicate. Sometimes she will climb into her chair which we take to mean she's hungry. So occasional 'clues' but not always clear at all

And yes the Hanen woman did make suggestions and she also has arranged to come for another visit this week, which is nice of her as I expect she doesn't get paid extra to have to do any repeat visits. And to be fair the earlier visits she really helped us observing how we interact with her - think she just chose a bad time when the meltdown was already on its way. The Hanen stuff generally I think does help a bit, all of the back and forth type things, trying to reinforce that, but to be honest (a bit like you with your cards I think) we sometimes feel a bit overwhelmed and probably are not trying as much as we should. Or obviously we are trying but sometimes on 3 hours sleep it's easier to just let her build her blocks on her own for 15 minutes than push yourself into her bubble and make a game of something. I can be critical if I come in and DH is on his laptop instead of trying to engage but I know I do the same too and you can't sustain 100% all of the time, if that makes sense.

Sounds like your cards went well this weekend though @carriebradshawwithlessshoes ! Hope that gave you a bit of a boost, I know it can be hard to be focused on 'communication' that isn't verbal.

ahna the OT butterfly on IG has a fold up camping swing/hammock type thing which she says is amazing and looks great. I had a half hearted look to find something similar here but no joy yet. Have a look and see what you can find.

bubbles Ahna? I had a SALT say once in her whole career she has only known one child not motivated by bubbles…it’s an easy one to pick up for them too. Re DD2, if supervised it may be quite nice social interaction for DD1. DD and DS love to hold hands and bounce on the trampoline or (it’s a bigger one as outdoors) play tig on it or chase each other round. DD actually tried to bounce yesterday with DS on her back I was like, aaaaargh!!!! No!!!!!

I did once have some very effective Spanx pants a bit like cycling shorts but omg what a nightmare when you needed the loo! That said I find the same issue with jumpsuits much as I love them!

Open I agree with what you say, but I just think the worry over DS has turned me into a monster raving lunatic with no logical thought process. I’m not like that with DD, I’m a good mum to her and follow what you say well most of the time. But the big black shadow of worry and fear and often downright desperation with DS has really turned me into a very different parent when it comes to him.

Uno I had the same issue with Spanx. I have since come to the conclusion they were probably too small.

The good thing about bubbles (apart from the fun) is the breathing. The long, slow out breath helps regulate the nervous system by stimulating the vagus nerve.

carrie I get that. We’ve had these issues for longer with ds and he is older, so I really do understand the worry.

All you can do is the best you can given what you know now and no more. You’ve moved him to a new school, give it time for him to settle in before you come to the conclusion that it’s not working. Remember too that there are many ways to be successful in life, and many definitions of successful - you have talked about this before.

The communication is really coming on so carry on with that.

Can’t cut and paste but re your Spanx conclusion my personal conclusion is that I just need to bloody well eat (and drink) less! 🤣🤣🤣. And get off my bum more.

Thanks Open. Sometimes I do wonder if there are hidden secret professionals on these boards put here designed to help/ keep sane crazy and desperate parents. If there are my bets are on you 🤣. Joking of course but your advice is good. I think my driver just at the minute is to get DS past these very basics (communication/ being consistent with the toilet, stuff like that.) the rest is what it is but it’s very hard for him to still be not meeting those very low/ young age expected targets.

I’m definitely not a secret professional, I’m just a couple of years ahead of you on this and have more time to read since I’m not working.

I really think that focusing on the comms with things that motivates him (as you did) will make it easier to transfer that skill to other areas later. Don’t try to push past that too soon maybe.

That is brilliant about the party @dimples76 - and glad everyone had good fireworks nights too (barring a bit of misplaced wee!)

We had a weird half term so kids just back to school and desperately trying to catch up with the rest of life! I do think constant feedback is hard to deal with. When you are parenting an NT kid you simply don't get it - parent's evening once a term and even that often says very little. I'm sure they are also having good weeks and bad weeks but as long as they are not disruptive and in the normal range of output/achievement the school just gets on with it. It is a very different parenting experience to have constant feedback on a SEN child and definitely demands a lot of us emotionally. With DD we've had periods of both constant feedback and much closer to an NT experience and the latter is definitely easier (even independent of how DD is actually doing). If you're getting daily or even weekly updates it's really hard not to obsess about it.

But then if the alternative is thinking everything is fine and then having a shock at parent's evening that's obviously not good either...

@UnoQueenie lately Ds has been saying : ‘you’re always bossing me around, ds do this, ds do that’ etc. Now he isn’t demand avoidant, happily does other stuff when asked but this response is primarily about screen time and going to school. What script do you have for your own ds for the more non-negotiable demands?

@openupmyeagereyes I just say that they're not my rules but the rules for everyone. E.g. he has to go to school and I have to go to work because those are the rules, we all have to be safe so we have to follow certain rules, etc. It unfortunately includes a lot of modelling behaviours and DS needs to feel like everyone is being fair so we all have to follow the rules and explain them. So if I say no one can eat chocolate before dinner because we don't want to ruin our appetite, and then I walked in eating some, he would be upset and demand some!
So I just explain why something is important, explain that everyone follows that rule, and model following it. Oh and we make visual books where we agree on the tasks and timings of a routine, e.g. bedtime, then I refer to that if he avoids a demand like brushing teeth and it seems to help as we are following the written routine that we both created rather that me just nagging!

Uno that makes sense, and I think we do say that but also get involved in a lot of wheedling and trying to persuade when he still doesn't comply. I guess if they still refuse, I'm unsure what my next step should be when I don't want to punish.

Transitions are sometimes hard for him, once he's through it he can be ok.

Tough titties, when you have a child you can tell them what to do, that’s what parents do, that’s what mine did, that’s the drill. I say that tongue in cheek because I say it of course to DD. UNO’s response is far better.

fab day today. ‘dS has tried to bite several members of staff whilst outdoors playing happily.’ This is what I mean. So now I feel thoroughly fed up. He’s had such a good weekend too and not done anything like that for as long as I can remember. They add he was happy so I have absolutely no idea.

Tough titties, when you have a child you can tell them what to do, that’s what parents do, that’s what mine did, that’s the drill

said by someone who has two compliant children 🙄

Sorry open, I’m joking, I do say it to DD but she’s obviously NT. She’s not compliant tho at all, and DS is def not!! DD rolls her eyes as I did with mum and dad, in fact mum still says it to me 😀. So I’m just being lighthearted, clearly not what to say to any of our children. I’m not sure with DS it’s really tough isn’t it. I think unos reasoning is really good as always and I guess it’s trial and error. I think it’s tricky with all children. I don’t feel sadly DS is at the stage of really understanding reasoning so with him I keep it short, with him it’s usually qualified with something not being safe etc etc.

Ahna your ds sounds so much like my ds at that age, he was constantly upside down or sitting in weird positions. We have a gorilla gym doorway swing and it's brilliant.

Dimples the wedding sounds great!

Carrie the Spanx comments make me laugh.

Yeah people with compliant children can do one open!

We're ok got to get ds to the dentist again tomorrow to have a crown fitted. The last appointment on Friday was an emergency one because, ds being ds, had managed to get rid of the spacers without me noticing. The last visit was a bit of nightmare, trying to run away, collapsing in the doorway and eventually the dental team had to work on him in the waiting room! Lesson learnt that I need to feed him in the car on the way there and have better bribes! I hate the bribing thing but sometimes it's the only way to get him to do something non-negotiable.

Crumbs liv, I think bribery is fine in those circumstances, no? It’s the everyday bribery that - here at least - is unsustainable and becomes ineffective.

It looks like our ds is going to need braces (thanks dh!). God only knows how we’re going to deal with that when it comes.

dS has tried to bite several members of staff whilst outdoors playing happily so he’s just seeking some sort of sensory feedback, rather than trying to hurt anyone?

I think so Open. Tho you would think they could just identify that and then deal appropriately. Whatever the reason it’s not behaviour they want I’m sure ☹️. As said before I just find it really grinds me down although your earlier comments about it being a long game are of course right.

What I have come to realise with my own ds is that there are probably always going to be tricky days or times. In January I was hoping that everything would magically sort itself out because we changed schools, but that was just naive looking back. It would be nice of course for there to be no issues, but it’s just unrealistic I think. I think I also have to accept that even if he goes to school most of the time, there will likely be days, or even times, when he struggles to. Hopefully the straightforward days outnumber the tricky ones.

Open you are spot on. I definitely give up too quickly on some of my changes - especially the ones which are hard work for me!

Ahna my DS had portage and for me it was the most effective support I have had. Actually based at home using what you already have/borrowing things and for me just having a cheerleader for DS and me. She would notice all the tiny improvements. I cried when DS reached the age limit and they had to stop. I hope that your home based support is as beneficial for you.

Liv good luck at the dentists. We were meant to go last month but DD was ill so I had to postpone. I am dreading it. DS has got terrible about brushing his teeth at the mo. I am currently sporting a bruise from him throwing his electric toothbrush at my head.

Light it's so different in terms of feedback isn't it.

Yesterday I glanced at my phone and saw 30 messages on the class WhatsApp group all about how the homework isn't challenging/interesting enough, they're planning to raise it at parents evening. I used to chat to a lot of other parents in the yard at pick up but I now just feel like I am living such a different life it's not always comfortable chatting. Mind you I don't envy them their crazy after school activity schedules they seem to be constantly running to some class or other.

You see that kind of feedback would drive me nuts @carriebradshawwithlessshoes - what are you supposed to do with it? As you say, I'm sure NT kids also have days when they are more or less engaged or helpful or concentrating or whatever, and I'm sure the teachers notice, but we don't get daily feedback because what are you supposed to do with it? But the biting is really the same: there's nothing for you to do with the information so why share it? Maybe a weekly or 2-weekly update - or if he seems really dysregulated mention it to see if there is something going on at home. But with the biting, either they are dealing with it, or they need your help to deal with it (e.g. "have you ever tried chew toys or chewlery with him - we were thinking it might be helpful with regulation at school - can we discuss?"). But if it's just a comment then it just worries you to no benefit.

@dimples76 Ah that's great to hear you had such a positive experience with portage! Thanks :)

I’ve just looked back Light on their words, they have said ‘just for your awareness’ . What I just find so 😥😥😥 is that yes he did do it at his previous, terrible, didn’t know how to handle him school… 2 years ago! So why is he going backwards?

Yes Open there will always be ups and downs but what drives me to distraction with DS is that for every one positive comment there are 100 negatives. With DD for every one negative comment there are 100 positives. And her negative one is never that negative! That is soooo draining. I said to DH this morning I didn’t expect wonders but in 2 months I would have hoped for even a little bit of tracked progress… that they had taught him one or two signs/ pecs that he was using consistently in the day; that he was having fewer toilet accidents (even if not completely resolved); that he was following consistently one direction at school that he hadn’t been following at the start. Is that really so much to ask? But then you are between a rock and a hard place because whilst I would love to launch into all of this with them I don’t want to annoy/ cheese them off to the extent they are trying less with DS because I’m a too pushy/ neurotic mother.

yes Dimples I’m totally with you, I no longer talk to the mums and in fact don’t really socialise with many friends any more. I’m tired of eating overpriced croque monsieurs whilst listening to tales of how little Johnny does 20 out of school clubs which improves his athletic prowess as he’s training for the county under 10s rugby and wouldn’t it just be AWFUL if he didn’t get a place? Or little Annie who is just so stressed as she’s competing in the local piano playing competition the day after her grade 3 exam. Then they say, finally, oh how’s DS Carrie? Oh AMAZING!! Bitten 3 teachers, still not talking, still having regular toilet accidents and I’m thrilled to say after 2 hours of stress and tears managed to repeat ‘b’ yesterday, I’m just thrilled! 😡.

so I’m now a recluse! As another poster wrote a while ago on here ‘the juice isn’t worth the squeeze.’

hope everyone’s week is going ok so far!