Primary school auties: summer and the new academic year - thread 7

[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

Oh I’m definitely on the spectrum. I would of been diagnosed with Aspergers / HFA when younger.

I realised about 3/4 years ago. All my research with ds. Loads of my childhood makes sense now I know what I know. My mum said I was a very strange child (and very clever, not sure what happened there) she even said to me a few years ago I didn’t know what autism was but now she knows what it is and the symptoms / all the quirks, she knows that’s what was going on with me as a child.

I talk confidently online, but hate talking to people in real life, I say the wrong thing all the time, very socially awkward & I joke a lot but that’s how I make myself feel better with situations I feel awkward in, i often say things without engaging my brain and think what a dickhead why have you just said that then replay it over in my head, i hate eye contact with a passion and avoid it, I have only 1 friend in real life, I hate interacting and I much prefer it that way. Couldn’t do interacting all the time, literal hell. I’m a nightmare for talking about myself / life (if you hadn’t noticed ) I think to myself, right! quiet now ask someone else a question you’re coming across as a twat. like when I’m on the phone to my mum / sister I don’t let them get a word in edgeways. I even do it when school phones, I keep interrupting them to get my point across, I know I shouldn’t do it but I cannot help myself.

I often read my posts back on here and think jesus 😳😂 I don’t mean to do it.. I just have a habit of telling people my life story / oversharing, again I’m sure you’ve noticed 😂

If I’m going anywhere new especially in my car (which I try to avoid) I have to google street map it a few times first so it’s familiar, otherwise I’m an absolute wreck, if I google map it first it helps me feel like I’ve been there before and takes some anxiety away. It took me from age 17-29 to learn to drive. Then I only passed in an automatic. I’m brill with paperwork / written work but practical stuff I’m terrible at.

I have set routines every fucking day, everything has to have a place, it causes me massive internal anxiety if it’s out of place. For instance simple things like dh hanging his dressing gown on my door it makes me itch, it doesn’t go there! Put it where it belongs! I write to do lists a lot and tick them off as I go along, I’m a very organised person, I’m early for everything and always prepared, i cannot allow myself to be late and rushing really stresses me out, the time they picked ds up late for school in the taxi honestly when he left I came inside and had a mini meltdown and cried I phoned the school in a panic and they were like chill! It’s fine. To me though being late isn’t fine.

I’m good at working people out / good judge of character and know instantly when someone is trying to take the piss, or use excuses. Dh says it’s my special talent lol. This is why things like schools, when I say I know they are taking the piss and being manipulative by them saying it’s in ds best interest, I’ve worked out long ago it’s not in ds best interest it’s in theirs and they are using ds as their excuse. I can smell their shite a mile away.

Loads more, i won’t bore you. My Dh knows the score, I’m not 100% certain he’s NT either but not autistic, (he’s the opposite to me but still similar in ways) he’s more adhd. (Poor ds didn’t stand a chance did he!)

I’d not get a diagnosis or anything, it would be of no benefit to me. I cope perfectly well and I don’t think anyone realises about me or if they do they haven’t said anything. I think girls / women present differently? I’ve read about it before.

I definitely masked when I was a child, I can remember not wanting anyone to think I was weird at school and would keep it together.

I would sit in my bedroom when younger, exactly like magrat and have pretend conversations, my mum used to say why do you always talk to yourself? Etc.

Magrat a lot of what you say really resonates with me x

Sorry long post. x

So interesting @danni0509, thanks for sharing, weirdly it took me ages to ride a bike and now I can't remember how to do it! Like, I can't balance or work it out in my head. I can't judge distances or gaps so never passed my driving test, I have no sense 9f direction, and I can't work out aerial maps! DH, an architect, despairs of me as I can work out what is what when he shows me buildings on plan! Although he memorises car number plates without meaning to so...!

But I can do yoga, so the bike thing isn't about balance, more about the mechanics of how to ride it I think it's like I have a gap in my brain re things like that are directions.

And directions, not are directions!

Magrat, that’s hilarious, dh is a town planner and despairs totally of my complete inability to know where I am (I even get lost in hotels, start walking the wrong way down corridors etc) he says he is not going to answer the phone any more when I’m driving and lost as it’s just ridiculous that I’m so inept 🤣.

Joking aside I’m not remotely on the spectrum (well, don’t they say we all are just some further along than others?). I’ve totally changed since DS because of DS but before that I was an extrovert, the first to suggest hosting a party, getting together with friends etc. I hate zoom/ Teams meetings because I can’t get eye contact with people or read their body language as well as I would like. I’m pretty flexible with most things, no huge hang ups, really interested in people and what makes them tick (I read books/ watch films just about someone’s personal journey, DH sits there in the cinema wittering ‘is something going to happen soon, I’m bored out of my mind, where’s the action’). I’m the freak of the department because I don’t mind public speaking at work so get landed with it. I’m happy to talk small talk in the office it’s no big deal and I’m genuinely more interested in what people tell me that vice versa.

Job sounds good Magrat… no commute sounds lovely! I know what you mean about a distance bet home and work, we live within walking distance of a town and see the same faces all the time (I don’t work there tho). If you do see someone from work I’m sure a cheery ‘hi there!’ whilst keeping on walking gets the message across. Hope you are not a Dr.. my friend who is used to get lots of grief from generally older patients stopping her in Tesco asking if she could just have a quick look at….. 🤣🤣

But for what it’s worth I passed my driving test 4th time so not great, can’t ride a bike or ski or stand on a paddle board, my balance is terrible. So who knows… a bit dyspraxic maybe?!

I love a short commute! Struggling a bit with being back on the bus with kids (I used to walk!) When work calms down a bit it will be better I think.

I'm pretty sure I'm autistic. I had thought I wouldn't get Dx as no point, but I am wondering a bit more now if I might. Would have to do it privately though as I couldn't justify using NHS funding, and it's a lot of money if I don't need it. I just feel it would be useful to know, and DD might like to know too.

It's funny though, I'm never 100% sure as I do see autistic traits everywhere since becoming more aware. It's so hard to ever know really what another human is experiencing and whether it is the same or different to you.

I am definitely quite sensitive though (less so than as a kid), quite rigid (will often stick to my Plan A even when facts change and make Plan B or C much more sensible, always have a spreadsheet to plan my holidays and do lots of research for any task/situation that is outside my norm). Definitely an over-sharer (I LOLed at you saying that @danni0509 and thinking how long are our average posts compared to everybody else's!! ) Very clumsy/poor proprioception. I hate Go Ape or anything like that. Feel terrified even on kids play equipment - I won't even go on things DD will go on, and she's got similar issues!

I do think it's hard to untangle childhood experiences too. I have a local friend who has wondered if she's autistic, but she also had a narcissistic mother and so she's not sure if it's just her childhood experiences or her own neurology. My cousin (who's an art teacher and teaches a lot of ND kids) said she thinks her Dad and my Mum are probably autistic - but I always thought my Dad was where I got my traits from (and my Mum and Uncle had a very weird upbringing too, from too very outgoing/wild party-loving parents, so I suspect to the extent they have autistic traits it's probably more to do with that - that's probably why my Mum was drawn to my lovely autistic Dad who is calm and likes planning things and small groups and hates gossip!)

I definitely feel different sometimes but as you say Light it's hard to really understand how others experience life. Although I generally had a happy childhood I also experienced significant trauma which may be part/whole of the cause. That said I am v clumsy/badly co-ordinated. It took me 5 attempts to pass my driving test. Pre-parenthood I arranged some private swimming lessons to learn the front crawl. I told the teacher at the start that I thought I was probably dyspraxic and after 5 lessons he agreed with my self-diagnosis!

Have any of you gone down the retained reflexes/chiropractic route for your children? As part of the specialist assessment DS had funded by the Adoption Support Fund we saw a neuro motor development consultant. During the assessment it really hit home how poor DS's balance is. The guy appeared very confident that he could make a significant difference to DS. Oddly although the ASF funded the assessment they won't fund the therapy (I would have thought it should be all or nothing). Part of me thinks we should give it a go but I am also a bit sceptical.

I'm so fed up with my job right now. I feel so unsupported and disrespected, I wish that I could just quit.

Yes, I know a fair amount about retained reflexes - we are doing this with DS. I'll PM you Dimples so I'm not wittering even more on this thread than what I usually do!! :)

Ah, just logging off and its frozen so I will say here but keep short! Do PM me if you need more info Dimples.

In Jan last year a friend mentioned BIRD (google them) in Chester who assess and work on retained reflexes. We took DS and they assessed him and gave him a scoring of I think 76% (the higher the worse it is). We do exercises each day that they recommend - you can do them for your child if they can't do them themselves, they are a bit odd (opening and closing fingers and lifting knees at certain times) and need 2 people to do them if your child can't/wont do them themselves (DS could not do it accurately).

We go for assessments from time to time (more so now, we had a big gap during COVID) and his reflexes have dropped by 24% which apparently is really good. He has improved in a lot of things, most noticeably gross motor like now being able to scoot, track and kick a ball etc. Is that linked to the reflexes that have fallen away due to the exercises - its really hard to say. Possibly? Probably? Unfortunately the "biggies" for DS (speech, attention and focus) don't seem improved but its apparently a long game.

Sorry about work Dimples and do PM me if you need more info x

I've heard about retained reflexes but never tried it with ds, it would interesting to know if it helps dimples.

There's a lot of autism/neurodiverse people in my family (and dh's) so unsurprisingly I have some traits I would say are similar but I don't think I'm autistic. I definitely have some sensory issues, also I've noticed how similar to ds I am about 'special interests' and I do find eye contact very difficult but I think that's where it ends really.

It was ds's birthday on the weekend and someone bought him a marvel 'infinity gauntlet', which he is now wearing the whole time! Thankfully it came off for school today.

Thanks

Carrie sounds similar in terms of approach. He said that he would need to do a more detailed assessment first to determine the baseline and then I would do 5 mins of exercises with DS every day and have monthly appointments. DS adores the therapist as he has a car with a sun roof (DS's current obsession) and he let DS sit in his car and play with the sun roof at the end of the appointment. I think that I will give it a go as I feel that DS's motor skills are really holding him back especially with some life skills like dressing.

DS just spat in my face so I have had to walk away.

Ds had tricky morning at school apparently, usual hyper manic stuff. Teacher messaged me. Surely they see this stuff at special schools though?? Where are the solutions?? Parents evening is soon so I'll be asking. And no I don't know why he gets like it, probably adhd or anxiety based though! Argh. Feel like its all happening again like in mainstream and with starting a new job and covid figures rising, I'm having a wine tonight!! Just made the mistake of watching the sqid games on Netflix though...very good but has anyone else seen it?! Won't be able to sleep now ha!

I would think so Magrat! Can I ask what you mean by hyper manic? Trying to pick apart DSs current behaviour which I would describe as the same and if so can we share solutions?!?! Does he behave like that at home? Or in any particular situations?

I have to say and I’m using words really carefully here that I see a lot of children with noteable SEN but they are actually still… focused, engaged. Like you watch Mr Tumble, the children are sitting nicely waiting to meet Mr Tumble, answering questions, pressing the red dot etc. Even if they do have speech/ cognitive issues or whatever. DS’s whole demeanour (often not at all linked to stress or anything) is like he’s been plugged in to a mains switch… jumping, shouting, fidgeting, moving, twirling around, hiding, it exhausts me to watch him! Tbf I can see why school can’t manage that! He’s often not like that but often is. Is that what you mean Magrat?!

I hope you're having a better day today dimples.

Magrat I would definitely expect a plan rather than just a comment on behaviour. Ds gets manic for a range of reasons but mostly of he's very anxious, tired or happy. You would hope the school would be tracking behaviour to work out a cause/solution.
Haven't seen squid games but it sounds interesting!

Ds has been waking up super early the last few days between 3-4am. What's quite nice though is that he's more able to explain why. So he told me about one of his dreams the other night! Something I wasn't sure he'd ever be capable of a few years ago.

@carriebradshawwithlessshoes it's much like @livpotter describes, episodes of heightened behaviour typically with decreased impulse control and sometimes challenging behaviours. It happens usually when he's excited, angry, or very happy. He gets into giddy moods. Parents evening went well but another message today to say he's been heightened on and off today so they took him to calm down etc. AIBU to suggest that he just needs this help for now as he can't regulate himself too well?? His anxiety spikes too. School say they don't see demand avoidant behaviours but I think what's happening is he's doing everything they want but all the demands cause the anxiety to build up. Leading to more heightened states. Argh. What's the solution though?? Has anyone seen an EP privately? We had one assessment when DS was 3 then nothing and I'd love to find out whats actually going on with DS!!!

Thanks Liv

Magrat DS hasn't been seen by an Ed Psych in over 4 years either. School did say that he would be seen again this term...

I am still v stressed with my work which makes me less patient with my children which makes DS worse and I just feel like I'm stuck in this vicious circle.

Had a phone call from SENCo yesterday she said that she'd been trying to chase EHCP caseworker up but had just got an out of office reply, not back til 27 October. If I appeal lack of OT provision I only have until 15 October.

DS seeing the Ed psych today at school. I’m sceptical that anything will come from it that’s positive it never does for DS in a school setting.

Magrat, playing devils advocate (about my own DS who also behaves like this), is there a solution other than a) medicating to stop him having such hyper behaviour (and I’m watching dannis story closely re this) b) less sensory stimulation/ taking him out to a quiet environment to calm down or some sort of distraction technique? You would think and hope that the calmer nature of SSs naturally would provide (b) so behaviour would be better. If not (and I say this about my own Ds who can be hyper in a room of one) then what’s the answer? I know all your DC are verbal and can have 2 way communications, talk about things etc but DS can’t so for him I honestly don’t know the answer. Much as I understand Dannis reservations about medication, as I sit here at the minute I often feel that is DSs best chance of those behaviours being controlled (assuming they are occurring with a frequency/ to an extent that they need to be).

I do agree tho that a SS shouldn’t be emailing a parent all the time though about this, it’s classic I would have thought par for the course behaviour! I was really hoping getting DS into a specialist environment will negate all this feedback from school crap but then I read some posts on here and worry it won’t.

Really interested to know how others think their DCs can be helped with behaviours like this and what schools do suggest as maybe I’m missing something! 😬😬

I do hope that maturity and being able to cope better with age is the long term answer I should say!! But for my very tiny, very young, totally immature just turned 6 year old that seems an age away.

Gosh, just trying to catch up.

dimpes, sorry work is difficult at the moment and that it's impacting on your home life. I hope you can find a better balance soon. Have you spoken to anyone at work about it?

Magrat ds saw an EP at nursery, aged 4, for his EHCP assessment. He was seen again, virtually, last December and the report was very good which I hadn't expected given she'd not been in to see him. It had some great observations on how the TA was working with him and recommendations for the school. Over the last year I've spoken a few times with a private EP, who has not seen ds at all, just to get support around the school refusal mainly. She was lovely and quite helpful.

I'm not much help for those struggling with manic behaviour as, thankfully, we don't get too much of it

Ds has been in mostly for three hours daily this week. At this point I don't want to increase it beyond that as I think it's not in his interest and it will only backfire. Once he's more settled, reliable and is productive for most of those three hours (i.e. not sitting in the library listening to stories) then we can think about increasing it. I've no interest in a box ticking exercise.

We had a few hairy days again of tantrums when it's time to turn off TV/games but this seems to have settled again for now.

Magrat, we seem to get more complaints from his special school than we did his mainstream its wearing thin……

He said at school this week, ‘tough titties’ and they made a drama about it (not to me, to the taxi driver telling her if he says it to ignore it and don’t laugh, not to show him any eye contact etc) the taxi driver was like I thought they were going to tell me something really bad…..

And to be honest that’s watered down in comparison to some of the things he says, although some of the things he says are not right, I know, but he could of said worse (he called blippi a bastard the other day at home for instance) he doesn’t know what titties are and he’s saying it because he’s heard me say it to him. I say it jokingly, when he’s protesting about something or another I say ‘tough titties’ I didn’t think it was the end of the world, I’ll not say it to him in future so his school aren’t frothing but honestly I always hear people say it, my mum used to say it to me..

There’s seems to be some issue or another quote often, like when they phoned me about ds taking a Lego figure home in his pocket, I was half expecting the school to send a cop car and put ds in prison 😂

Sometimes it’s a bit OTT..

I did get an email yesterday though to say he’d had a nice morning so it’s not always bad. Just some things I think they are dramatic about and it’s not what I expected in a special school. I don’t expect him to get away with everything of course, but come on, is it the end of the world for a child to put a tiny battered plastic Lego figure in his pocket (that I would of sent back as soon as I washed his cardigan) and did it really warrant a phone call home!

That’s hilarious danni I say tough titties all the time usually to DD. Then again I’m no example, I was saying something far worse about the Head as we drove along and passed him, DD muttered in the front ‘it’s a good job the window is not down mummy, isn’t it’??. I might have replied tough titties to her… 🤣🤣🤣

Carrie, I am definitely no example. 😂

I got an email from ds school last week to say a child in ds class had head lice (it was a really patronising email to say it’s contagious and you MUST check your child’s hair bla bla, much more over the top than what I used to get as a quick text from old school) I checked ds hair, he didn’t have headlice. (No big deal if he did, he’s had them before)

Later that night he said, xxxxx (teacher) said I had spiders in my hair in the sandpit. (He calls head lice, Spiders) I was like omg they think ds has dicks! And then I thought that email was about ds.

I was like ds repeat after me, you say to your teacher. I don’t have ANY spiders, my mummy checked my hair!

Fuckers! 🤣