Primary School Auties 10: Summer and beyond 2022

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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

Aw @carriebradshawwithlessshoes , I know what you mean. I'm still on some whatsapp groups back from original NCT days and they have always been quite bad for the 'humble brags'. I feel like I'm ok with being a recluse for now but sometimes I wonder how much the lack of social support / just friends to have wine with is impacting my general mood

I’ll have a remote glass of wine with you ahna 🍷. Know what you mean, it’s a balance isn’t it.

Cheers to that!

And yes such a balance. Although I have a few really good supportive friends back in UK, who are great via whatsapp and occasional visit / chats, without a real support network here I do find that I can be a bit of an oversharer (e.g. with colleagues, my language teacher etc) - I guess that's telling me that I do need / value friends irl to talk to about it all.

Ahna, DH says to me ‘Carrie you just need to know when to stop talking!’ 🤣🤣.

re DS I find with colleagues etc I say very little as I do hate that ‘I feel so sorry for you’ look that comes over peoples faces the more I say. I tend to stick to ‘yeah he’s fine’ tho after the last parents eve when a colleague asked me how it had gone I did add ‘about as successful as Liz Truss’ appointment.’ No one asked more after that not hugely surprisingly….!!

@carriebradshawwithlessshoes I know it sounds cringy but try to find your tribe. I have a couple of great sen parent groups now, one via school and one locally formed, which are great as you can chat with other parents who just get it. I found myself drifting apart from nct mares etc because our parenting experiences and styles are so very different. I used to feel quite sad about how a couple of them seemed to basically dump me when DS started having challenges but that's life I guess and it meant thry weren't real friends in the first place.

Thanks uno. Not cringy at all, one Head said to me you need to find your people. Do you find though that mixing with such groups causes any worries in itself? Like, for me, I can see myself getting more stressed if there’s children twice DSs age still not speaking/ communicating etc. I’d think that will be him and be quite depressed about it if that makes sense.

I have a mix of friends with NT and autistic dc and I value both. The friends with NT kids are understanding and supportive, otherwise it wouldn’t have worked out. Like others have said, when your child has sn’s often parents aren’t interested in being more than superficially friendly. I find being older doesn’t help much either.

Even when you have friends with sn’s kids there are still things that their kids can do that yours doesn’t, and vice versa, obviously.

I see less of them all at the moment since I have ds with me most of the time. Hard to get out for coffee alone.

Not in a place to post at mo' but just wanted to say again how much everyone's insight and experience on this thread helps - thank you.

Sorry if things are tough @StarDog but glad you are still here in spirit!

I think I'm lucky that most of my good friends either have older kids (so going through all the teenage horror) or no kids. And in fact several of my friends with older kids are now getting ADHD or autism diagnoses as teens. It also turned out that in our group of 4 NCT friends who stayed fairly close, 3 have SEN kids, so we were crazy lucky there. I'm also on a MN WhatsApp for my birth month with DD and weirdly there is quite a high proportion of SEN parents on there too (several autistic or ADHD girls), so I'm really lucky to have that, it definitely helps. It's not that our experiences are the same but it's a space where you can talk about weird parenting stuff that probably wouldn't apply to most parents and there's no risk anybody is going to correct you or ask if you've tried something stupid, as can happen in real life!

As my assessor said, I do seem to have created a bit of an ND bubble around myself - but it really feels more like luck than judgement. I guess those are just the people I'm comfortable with and vice versa. I do feel very lucky to have them all though, even if we don't see any of them a huge amount because parenting/work/time....

Hope you’re ok @StarDog x

Ugh more school shennanigans that I've had to push back on. Apparently DS getting overwhelmed still at times and doing unsafe behaviours which meant he's missed out on lots of fun things this week, which of course has only upset him more. I mean, we all know he shouldn't do the unsafe behaviours including him, but I have to ask what is causing him to get into that state there again when just before the end of last half term he was calm all the time.

So, message from teacher tonight saying they're giving more choices in lessons but he's still up and down. So I ask, why? I asked DS too. Turns out, they're short staffed and so have been forgetting to do his specific regulation times throughout the day as activities have overran etc. So I said, well, that would explain it then. What has got on my nerves is that they know he needs these things to regulate, but they don't have time or whatever, then they seem perplexed as to where the seemingly 'out of nowhere' unsafe behaviours are coming from. I mean, I would have thought it's pretty obvious - you don't give a child the tools they need to regulate then they won't stay regulated will they???

Argh. What's getting to me is that they're blaming him again it seems to me for the behaviours when it is to quite a large extent outside his control in the moment. So I had to push back and ask for timetables to be sent home so I can keep a closer eye again on what he's doing when etc. And I don't really see why he should miss out on things when he has the equivalent of 121 support and is at a special school in the first place. Worryingly, apparently with the wages they receive and the cost of living and schools finding generally, 50% of TAs are meant to be leaving the profession over the next year so...I mean, DS really needs a high level of TAs in the classroom.

I have to wonder whether any school setting will really be right for him moving forwards. Does anyone have any experience of EOTAS? Does the school have to agree? I'm not necessarily meaning for now, but I mean in the future it might be an actual possibility I think.

Uno I don’t know if the school needs to agree, I guess the problem is whether the LA would agree without the school saying they can’t meet his needs. I’m sorry this week is tricky too. Are these regulation activities specified in his EHCP?

Yesterday ds was crying at bedtime again about going back to his old school but he’s actually been doing ok this week. We still had some of his old class photos up so I’ve put them away for now. I’m not yet convinced we won’t need to do EOTAS.

The things he talks about missing are not standard school things, they are things they let him do while trying to get him in & stay in.

He stayed 2.5 hours today and at bedtime he did say he was happier there now.

Just reading in a hurry but yes I’m curious re EOTAS too… I bet if you posted with that as a heading as a new thread you would get quite a bit of response. Thatsnotmycar has a v successful EOTAS so I understand with her DS1 that she talks about in other threads x

Urgh it's just so hard isn't it to know if the thing you're doing is the right thing.

@UnoQueenie eurgh that is super frustrating for you.. you would indeed hope that the school would make time for (and prioritise) the regulation activities. I'm interested what type of things these are / how long do they take? Do you do the same ones daily at home too or is it more to regulate when in the school environment?

We just got a call that DD can start the SEN school (/preschool) in December. That is a big step forward to have her in the same place 5 days but I always get emotional with change. Even though the mainstream place can't handle her anymore, there are a couple of really good people there that have known her ages and are very invested in her. I think it will be an emotional moving on.

The school will finish at 3 and I don't want to do any after school care yet, think it's too much for her, so going to speak to work about making my hours flexible. I usually start the day super early anyway so hoping they will be OK with it, probably split the days with DH too.

Ahna great re the SEN school. It will be sad but probably better in the longer term.

Ds has had a pretty good week, the best this year so far I think.

Hi all.

dimples I hope your nephew is doing ok?

We took ds for a walk to watch the fireworks, no display (too much going on for him) just a general walk for an hour to look in the sky, he safely held a sparkler (with my close supervision) beats the other year when he tried to put the end out with his fingers, he chucked it right away when it went out, he also went halloweening, that went ok, although he’s got no filter and said to one house ‘I’m sick to death of the same sweets’ 🤣 but he did well and dh did most of the doors with him whilst I stood in the street keeping a distance. (Trying to let dh do more with him since he’s off work atm)

He’s been getting on ok in school, just his usual silliness, unfortunately he’s taken to shitting his pants on a daily basis there again, (hasn’t at home for months) after back and forth conversations with school we’ve come to the conclusion he likes to be cleaned up by the teachers, they aren’t accidents, he’s doing it deliberately. He says he thinks it’s funny. So I’m under the impression the teacher is making a fuss (probably annoyed with him) and ds is reacting to it. Anyway hope that stops because I’m sick of clinical waste bags every afternoon.

Hope everyone’s ok.

DH (Mr Diplomacy in our relationship) had a word with school about communications and agreed it should be scaled down to once a week unless there was anything groundbreaking good or bad. So now we have radio silence all week which is(a) better, I don’t hear from DDs school which means I can close them off in my head and not get that knot in my stomach at 3.20 when messages go out but (b) worse in that he’s obviously not doing anything amazing or they would be letting me know. On balance tho I would rather have it this way.

SALT and the continence nurse called today with plans for him in school so will see what that comes to. Open and Uno I note you don’t mention the toilet, do your DSs have no issue here? How nice that would be. They both understand then the social side of it and don’t like being wet? Really DS doesn’t care about either. The nurse did say if a child is completely oblivious/ indifferent to being wet or dirty it makes it very hard as there’s just no incentive for them to use the toilet consistently and I see that.

I think DS is perplexing school still, they say he’s a hard child to figure out. His SALT is very experienced and she said on the phone today that he doesn’t respond often as expected which confuses her. So he will do something that looks like obvious sensory seeking and they will move in quickly with whatever, a ball for him to bounce on, a bit of cheweley etc but he will then flatly reject it. She said all sensory seeking children would usually take it enthusiastically to satisfy that need but the fact he won’t makes her wonder why. He’s definitely a puzzle. She did say she wonders if there’s an element of demand avoidance, or not accepting what’s being given to him because he wants to be in control and do things his way and not take what’s being offered by the adult.

uno how is school this week?

danni glad Bonfire Night and trick or treating went well for you. Ds comments on the sweets made me smile! Hoping the toilet trouble sorts itself out quickly.

carrie good move from dh, though of course, as you say, you are stressing over there being no amazing good news daily...

We don't have big issues re toileting, thank goodness. I posted here a few weeks back that ds had had a few nights wetting the bed which was a pain but it stopped after that and hasn't reoccurred. Hes been toilet trained since before he turned four, though nights didn't follow for another couple of years - he'd have dry periods and then start wetting again. Now what happens is that sometimes he'll hold it too long and then go to the toilet when he's made his pants a tiny bit wet. He never wets fully though. He doesn't like getting even a tiny bit of water on his clothes, if he does they have to come straight off.

Would that be the case Open in other situations, like if he stood in a puddle and wet his socks? An aversion to that must be helpful! Took DS out yesterday for a long walk, we went through woods and he was wearing shoes not wellies. He didn’t react/ cry and it was only when home did I realise his trousers and socks were sodden, didn’t bother him in the slightest…….

Yes, he would want to strip them off there and then.

@carriebradshawwithlessshoes hope that you find a better rhythm with the feedback. That sounds a bit tricky w the SALT but great she seems experienced and also that she’s honest with you. Hopefully she makes progress as he gets to know her a bit more.

we are OK. Had a really nice outdoorsy sunny Saturday but a terrible night last night and meltdowns for the last 2 hours too. DH met a friend of a friend whose DS is autistic and didn’t settle into SEN school well, prefers mainstream - now DH is frantically signing DD up for mainstream schools. I find it a total waste of time tbh - it’s clear that that is absolutely not an option at least for a few years. Sometimes feels like he listens to everyone else’s opinions more than mine. I think he’s mentally where I was 6months ago re finding it a bit disappointing not to be sending her to mainstream / different expectations etc. But yeah I was kinda irritated maybe that’s unfair.

DD2 has had a tricky week of tantrums and resisting sleep. Hard to tell if just normal 2yo behaviour or something else. Trying not to overthink.

Thanks Danni, my nephew is doing fairly well but his oxygen levels are still a bit low and he remains v swollen from the steroids.

Carrie toileting is driving me around the bend here. I feel really let down by the continence service - I get a phone call every few months but it is always a different nurse. The home visit by nurse and play therapist about 2.5 years ago has yet to materialise. DS hasn't had a toileting accident at school for years and never has one with me outside the house. My Mum actually got DS to talk about it the other day. He told her that he likes the way that it feels when he wees and poos in his pants. Obviously he recognises that it is not acceptable to do it at some level and he clearly does recognise his body's signals. But at home he seems to think that it's okay to go in his pants, doesn't care about my rules and doesn't want to try and please me/avoid upsetting me. As he has no intrinsic motivation to change and ignores my instructions I am at a bit of a loss as to how to improve things. I have considered some kind of reward but that goes against most of the training I have done on a therapeutic training to deal with the trauma.

I don't feel v well but DS is just amused by my croaky voice.

DS seems more reluctant to leave the house. We went to a National Trust place we haven't visited in years yesterday. It was a beautiful Autumnal day here and I was desperate to get out. As soon as we arrived DS asked to go home. Fortunately they had a water play area so DS was soon in heaven.