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Primary school auties thread 9 - spring / summer 2022.

1000 replies

danni0509 · 12/03/2022 09:23

Thread 9.

Links to previous threads below.

For the parents / carers of children with additional needs, most of us have asd / adhd children in primary school, but anybody is welcome to join us to chat x

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

OP posts:
LightTripper · 14/07/2022 23:16

That does sound like a great review @dimples76 and I'm glad your AR went OK @openupmyeagereyes. And I hope you are out of hospital soon @danni0509 that sounds really scary. I'm sure DH will be able to juggle somehow - hopefully his employer will be understanding under the circumstances?

DC finish school tomorrow but have summer club at school next week, so I have one more week to do things! I've got extensions to finish the last 3 modules of the autism course, so I'm going to try to get at least the one I'm half way through finished next week, and maybe the next one too (though it's on "Positive Behaviour Support" so I hope it's not annoying...) I think the chance of the house getting materially tidier before autumn is now very low, but I have managed to do a charity shop and fabric recycling run, so at least some of the junk is out.

Then I have to figure out what to do with the kids. My sister is also off with her kids for the first week I'm off with the kids so hopefully we can do some stuff together as they will all really enjoy that (as will we!)

livpotter · 15/07/2022 06:48

What a nightmare danni. I hope you are ok today!

Light it's an endless battle here to get rid of things. Both dh and dd are total hoarders so I often have to do stealth charity shop runs!

Glad the annual review went well open. I hope it makes things better for you and ds next term.

That's so lovely dimples. It's so nice to have positive meetings.

Hope you feel better soon Esme.

Welcome acronyms!

We're ok here. Kids break up next Thursday. Dd is booked into summer club but I'm not sure that ds's school can do anything this year. I can't believe how quickly the summer has come around!

danni0509 · 15/07/2022 16:00

Thank you. I’m fine, I don’t have a dvt, I have a twisted varicose vein. I got home late yesterday afternoon. Still have a swollen painful leg but could of been worse.

Ds school have really annoyed me, sent a text at 9 this morning to say they are closed next Monday, Tuesday, Wednesday. (they only break up for 7 weeks on the Friday!!!) because of the predicted heatwave.

Taxi collected ds and they told her and she said well my kids are still going to school and the pa said hers were still going to school too and his teacher said well dfe told us to close, we have vulnerable children here.

How does autism make ds more susceptible to a heatwave? Other children there maybe but not for ds specific disabilities, so it shouldn’t be a blanket policy. Ds is supervised at school anyway so any extra drinks / staying in the shade would be par for the course in usual circumstances. If other children are more prone to complications due to a heatwave tell them to stay home but why for ds?!

I’ve checked dfe guidance and they have advised AGAINST closures so I’ve sent his school an email.

3 day closure because the suns out?!

We were in Turkey last week 42 degrees on 2 of the days. That was on the beach and by the pool, not in a classroom, teachers are snowflakes!!!!!! And want days sunbathing clearly.

Wednesday next week in the town ds school is in its forecast 22 degrees and rain, so why the closure on the Wednesday too?

OP posts:
danni0509 · 15/07/2022 16:07

Keep the children indoors or in the shade, ds takes a hat, has suncream on, takes a drinks bottle with him.

The taxi has the air con on.

I don’t get why they are closing for 3 days right before the 7 week summer holidays.

This is the same school that didn’t let any child in during covid even if parents were working. They practically shut up shop for a full year. So I shouldn’t be suprised.

OP posts:
livpotter · 15/07/2022 16:18

Glad it wasn't a DVT danni! Sorry it's still painful though.

Monday and Tuesday I could just about understand, but Wednesday is ridiculous, particularly as it's just before the break! Ds's school have offered home learning if you want to keep your child at home or think they can't manage in the heat but are otherwise open. Dd's school are also open but have said to wear whatever they like to keep cool.

dimples76 · 15/07/2022 16:29

Oh no Danni. I am sure that they possibly have some more vulnerable children but not the whole school and couldn't they let the parents decide and treat it as an authorised absence if people choose to keep their children home.

We are too far north to be included in the weather warning but DS's school have said kids to wear PE kit and take in change of clothes so they can play in water. The friends of the school is buying them all ice lollies. DS breaks up on Wednesday. I feel tired at the thought of it. I am working Monday and Friday every week bar one when DD is in nursery and getting my family for help for half days and then half day ipad/drawing/sewing. We have 1 week away in Scotland. I have signed both children up to an intensive swimming course. DS is also going to a free SEND group on Thursday mornings, 6 children with 3 adults - I haven't tried anything like that before.

openupmyeagereyes · 15/07/2022 20:54

We’ve been notified today that our school is shut Mon & Tues too.

LightTripper · 15/07/2022 22:56

Around here some schools are shutting early on Monday and Tuesday, and some are giving parents the option to keep their kids off just on Monday (i.e. it would be an authorised absence if you want to keep your kids home).

I'm not sure why it should be assumed that kids are less likely to overheat at home than at school TBH. Schools also have blinds to close and windows to open surely? But I guess every school is different and maybe that plays into the policy.

Wednesday seems totally nuts: it's not forecast to be at all an unusual temperature here (falling from 37 on Tuesday to 25 on Wednesday, which is pretty normal for July)? Even Tuesday is forecast to be within the bounds of temperatures we've seen before - Monday is the really extreme one.

danni0509 · 16/07/2022 08:04

Im over it now. 🤣 I’ll find something to do with him.

Ignore the week ds had off for holiday, it was booked in 2019 (and it’s ok when it’s instigated by myself 😂) but his attendance must be less than 50%. It was 60% at his annual review. Then since that, the week off for holiday and now these 3 days. Barring the week he had off for Turkey and 4 days in March when he had covid and wasn’t allowed in, the rest of the attendance is down to the school with part time hours, then these days off next week. Nobody has ever mentioned his attendance though, oddly…

On a positive note, can you remember when I said in January I had high blood pressure at the drs, then it was checked again and was high. CAMHS always said it was high when they were doing mine to persuade ds to have his. My gp was talking of giving me medication, but I said I was losing weight and I’d book back in for a recheck in 8 weeks (I never did go back to get it checked again.) in hospital on Thursday they did my blood pressure 3 times and it is now perfectly normal.

I’ve lost just shy of 2 stone so far, so must be why! (Still have 4 stone to lose mind you)

OP posts:
dimples76 · 16/07/2022 08:51

Danni that's amazing weight loss. Well done, you!

openupmyeagereyes · 17/07/2022 17:02

danni congrats on the weight loss and your bp reducing to a normal level.

dimples the weekly send group sounds great. I'd love ds to go to something like that (wishful thinking!). How did you find out about it?

I'm looking forward to taking ds swimming and seeing how much he's come on since we last went. He's been swimming almost every week this term. We have our gazebo up over the paddling pool ready for tomorrow. I totally forgot that we had one.

31 here today. Mon/Tues forecast is 39/40.

TopCatsTopHat · 18/07/2022 06:09

Hello there, I'm new to the thread and also new to getting my head around how to help my dd. She is in year 4, will be year 5 in September. A year ago the school flagged autistic traits, she's not diagnosed but it is now clear to me that things I was hoping she'd grow out of are actually part of her character. I wanted to ask this group for advice because for a while now she's talking about suicide (oh god, she's 9 😭). She is experiencing socially acceptability issues which have her self esteem on its knees.
When she experiences difficulties I try to talk to her about things she might do differently but the reality is it doesn't come naturally and she can't see what I'm taking about (and then just feels like I'm criticising her), or she can but can't fix it.
I also talk about the stuff she's good at and support her doing things she loves.
The reality is though that her traits put friction in her relationships and if she ever manages to overcome that it will be a miracle.
How do I help her come to self understanding and acceptance so she can find constructive coping mechanisms and hopefully arrive at a point where she can find friendships where she can offer her many brilliant qualities and manage her tricky parts.
I wonder if there is any help for youngsters her age to deal with such an enormous thing like the knowledge you will always struggle to do what others find easy? I wonder if there is any counselling or reading available to help her through this rejection she is living and the fact it is making her have suicidal thoughts.
Please if anyone can offer any advice I'd be so grateful. 🙏

openupmyeagereyes · 18/07/2022 11:49

Hi TopCats, how heart-breaking for you and your dd Flowers have you been referred to CAMHS at all?

I hope that someone with good advice reads and posts but the things that come to my mind are firstly, are you currently going through the diagnostic process? I think that if she were to receive a diagnosis then she might understand herself a bit better and get some validation with that. She may also be able to find friends, online or in rl, who are like her. Alongside, you could try introducing social skills via the comic strip approach:

www.autism.org.uk/advice-and-guidance/topics/communication/communication-tools/social-stories-and-comic-strip-coversations

Scroll down for the comic strip bit. If she's more of a visual learner then this might help her more, doing it in third person might also make it easier. There's a book called 100 social rules for kids that might help give you some ideas of what to tackle, though probably loads to be found online too. Light always has lots of advice on books to help in this area.

I think it's important when reframing tricky situations that it's done in a positive way to try and support her confidence. The truth is we are all always learning and adults get social situations wrong too.

TopCatsTopHat · 18/07/2022 14:54

Hi openupmyeagereyes thanks so much for replying. It is tough talking your child down from suicidal thoughts knowing the cause hasn't gone away. I know I'm not the only one too. 😢
She was assessed but the assessor said it wasn't clear it was autism at this stage and she should be reassessed when she's a bit older in a couple of years, so currently in a wait and see. But that she does have some sensory and processing differences going on.
Thanks for the resources I'll take a look and see if they can be useful, she actually gets a lot of social communication right and does it well. But when things are going wrong she doesn't handle it well and her emotional outburst causes people to distance themselves as they are wary of her. She will get upset very quickly so there is little warning and this is the main issue that puts a rift between her and others. Understandably people don't want to risk an emotional outburst. Add that to the fact that though she uses humour well, but she doesn't always recognise when other people are doing that so the risk for offence is ever present.
I don't think she will ever be good at that but maybe she can learn her limitations and find strategies to minimise the impact on others and therefore her social isolation. I hope so, because if she is feeling this way at 9 where will she be at 14 etc, she loves people and is really gregarious so this is particularly painful for her.

openupmyeagereyes · 18/07/2022 15:55

It must be absolutely awful, my heart goes out to you. No, sadly you are not alone. I know of someone whose dd is also suicidal Sad

If you have the funds I think professional help is best, but of course not everybody does and even then it can be hard to find support. Sometimes only places that have an inpatient facility will accept patients due to insurance issues.

My layman view is that in time, and with a lot of support, she can probably learn new skills and strategies to cope. She may learn an element of masking as time goes on. Not usually a positive thing but something we all do to a certain extent I think, though maybe that's the wrong terminology. I certainly don't want to offend anyone autistic as I know autistic masking can be much more extreme and harmful.

I do think that even though she's not been diagnosed you, might still be able to talk to her about neurodiversity and the fact that we are all differently wired. This might help her understand herself more even without a diagnosis.

At my ds' special school they use Zones of Regulation, but the OT there much prefers something called Sensory Ladders. This apparently teaches them more about how to recognise the feeling in their bodies when they feel certain emotions, or when they start to escalate. This might be useful for her as she must start to feel within herself when her arousal levels are increasing prior to emotional outbursts. It maybe something useful to look into.

Otherwise I'm not much help I'm afraid. On the SN_chat section there is a long running 'pub' thread where many of the posters have older teenage dc and more girls than we have here. If you post on there you might be able to get more specific advice. Please do continue to post here too if you like, of course.

dimples76 · 18/07/2022 19:23

How's everyone coping with the heat?

Enjoy the swimming and pool Open. Gazebo over it sounds like a good plan. I keep dragging the sun umbrella base around the garden to try and keep pool and areas they play in, in the shade. My 2 are having a lovely play in the pool now but I am not looking forward to bedtime. How to get DS to surrender his duvet?

Tophat sorry to read of your DD's struggles, absolutely heart breaking to hear her talk like that. I am lucky in some ways that my DS doesn't really see himself as different to others and regards everyone in his class as his friends. Are there any clubs she could attend with neuro diverse children? There are quite a few charities in my area which run lego clubs, baking sessions, arts and crafts etc for autistic children. I am only just starting to try them out with DS. Or do you think something like equine therapy might be beneficial. My niece is 10 and autistic and she loves horses - it seems like when she is around them she can happily interact with just about anyone. When they assessed and identified sensory issues did they have any recommendations? I am really hoping that when my DS starts his weekly occupational therapy at school it might help him being better regulated. He was raging when he came out of school today.How helpful have school been?

openupmyeagereyes · 18/07/2022 20:35

dimples we had to bin our garden umbrella because it got manky and I haven’t got a new one yet. Must order but I don’t want to drive anywhere until Wednesday.

hope bedtime went ok. Tried to get ds to have duvet cover only but he’s insisted on a blanket. It’s 33 degrees in his bedroom 😆

dimples76 · 18/07/2022 21:01

Thanks Open bedtime ongoing here. After a long battle I thought I had won the duvet argument. I am going to pull it off him when he's asleep. I am so tired and I could really do with doing some work and housework. I have a lot of work to catch up on today as I had to keep DD home, she was coughing a lot last night and vomited over the bed twice. We have the continence nurse coming around at 4:30 tomorrow and the house is rather messy. I am lying with DD who is tossing and turning.

EsmeWeatherwaxToYou · 18/07/2022 22:59

Well done on the weight loss @danni0509 and welcome @TopCatsTopHat ! I don't have much advice really aside from continual positive reinforcement and building up confidence but resilience and confidence can be tricky here too.
Not coping well in the heat and DS' school is shut tomorrow, probably for the best, but it's going to be tough as DS always wants to be on the go and often doesn't recognise he's too hot until he's very hot! He's gone to be with duvet and weighted blanket, managed to get him to leave the pyjamas but he wasn't happy at the change in textures and routine. DH is also being a mardy one at the mo as he's far too hot, I mean we all are but you know, he has it the worst obv despite wfh so not actually doing the childcare! I have ordered a pool due at some point tomorrow so who knows when!! It's still too hot here though. Argh! And they break up on Thurs here too!!

openupmyeagereyes · 19/07/2022 08:31

Gah, ds up since two. He usually sleeps better than I expect when it’s so hot. I hope everyone else had a better night.

openupmyeagereyes · 19/07/2022 08:33

And it’s already 29 degrees at 8:30am Hmm

dimples76 · 19/07/2022 10:17

2! Poor you, Open. DD was coughing a lot in the night so I didn't get much sleep. Gave up at 4am and started work then.

Work plans this week have really gone to pot and I'm currently looking after DD and DN as my other DN is in hospital- chicken pox got infected and turned into cellulitis.

LightTripper · 19/07/2022 10:44

That is amazing on the weight loss and BP @danni0509 ! Hope everyone is still doing OK with the heat - one more day to go, and sounds like this evening should be a bit cooler than last night thank goodness.

Welcome @TopCatsTopHat ! My DD is 8 (going into Y4 next autumn) and although she was Dx'd young they actually sound rather similar in almost being super-sensitive to some things but a bit oblivious to others. DD does quite often say she is being bullied and sometimes she is but sometimes it's just other kids being silly and DD taking it to heart, so it's really hard to guide her, because I don't want her to put up with nastiness, but also it's hard to form friendships when you are sensitive like that, and I do see the other girls doing playdates and sleepovers etc. and it's notable that it doesn't really happen for DD. She is fantastic and funny and lovely though, and does get on really well with her cousins and her best friend from outside school - but I suspect all those people are all also wired a bit like DD so they just understand each other better.

I do think some kind of out of school club around her interests might be worth a shot. Even if she doesn't socialise there (DD does ballet and martial arts but doesn't really speak to the other kids much at either) it will help her build her skills and confidence in areas she enjoys. Partly I just try to accept that DD doesn't need as much socialisation time as the other kids and needs more down time just by herself or with her brother/cousins/family.

As others have predicted I am now going to suggest a massive slab of books. They are all written by autistic authors, so quite apart from the content hopefully they will help your DD see that while being different is really painful as a pre-teen, it doesn't have to be as she gets older.

Of course I guess you would need to explain to her why you are giving her any of these books you like the look of. Personally I would tell DD that you think she might be wired differently to most of her friends, and that this can lead to misunderstandings (it's called the "double empathy problem" - it's not that autistic people lack empathy, but rather that all people tend to assume other people think and behave in similar ways to them, and for neurotypical people that's largely true, but because autistics are a minority it's often not). I'm also autistic and as I've come to realise that I suddenly see autistic and ADHD traits in lots of my friends. I do think there is something to the idea that friendships are just easier within these groups.

So anyway, I would explain that there isn't a hard line between "typical" and "not", and the science is constantly changing, but there is a good chance she is wired differently and learning more about the different ways people are wired can be helpful in understanding herself and others - hence big dump of books. 😂

So I'm going to start with fiction because if she is resistant to the idea that she might be different it could be a good way in. There is an amazing author called Elle McNicoll who has written 3 books all with neurodivergent main characters (autistic in "A Kind of Spark" which is realist, autistic and ADHD friends in "Show us Who You Are" which is sci-fi, and Dyspraxic and autistic characters in "Like a Charm" which is probably my favourite and is a kind of magical fantasy set in Edinburgh. These are all really cool neurodivergent characters and their neurodivergence isn't really poured over but is important to the story and is looked at in a very positive (but not rose-tinted) way. Honestly I would recommend them to anybody but for ND kids even more so. She has won several awards and they are just fantastic books in their own right - I really enjoyed them myself.

If she's less keen on reading there is also a graphic novel for kids called "Frankie's World" by Aoife Dooley that she might like. It's short and quite fun and the main character is an autistic girl. Aoife is a professional comedian as well as an illustrator so the humour definitely comes through. It's a bit like Tom Gates in style, if your DD likes those books.

"The State of Grace" by Rachel Lucas is also really good though it has a teenage main protagonist so is probably for slightly older kids and I haven't given it to DD yet. The "Geek Girl" series by Holly Smale doesn't mention autism but Holly was recently diagnosed and says that Harriet is based on her younger self, so is also autistic. Again possibly for slightly older kids though as the characters are teenagers. I really like Matt Haig's children's books - although they are not explicitly about ND characters, he was recently diagnosed as autistic and ADHD and I think a lot of his characters probably are ND (hmm... Truth Pixie - need I say more? There is a newish one called "The Truth Pixie Goes to School" which I really fancy for DD. "Evie and the Animals" and "To Be a Cat" are also excellent - though not specifically about ND).

Then there are (finally!) lots of great factual autism books written by young autistic women:


  • "A Different Sort of Normal" by Abigail Balfe (brilliantly illustrated and very fun/not too heavy - this is my favourite)

  • "Perfectly Weird Perfectly You" by Camilla Pang (again illustrated though not as charmingly: Camilla Pang is a scientist and looks at things through that lens - so if your DD is into science this might appeal to her).

  • "The Spectrum Girl's Survival Guide" by Siena Castellon. This one is a bit more grown up and has stuff on relationships so maybe it's a bit old depending on where your DD is at. DD did read it though and just skimmed those bits I think - I tried to talk to her about them but she didn't seem very interested so I didn't push it!

  • "Can You See Me" (by Libby Scott and a non-autistic co-author) - there is a set of three of these and they are fiction but based on Libby's experiences.

  • "The Secret Life of Rose" (by Rose and Jodie Smitten who are mother and daughter, and each write different sections of the book I think).

  • "Wired Differently: 30 Neurodivergent People You Should Know" (by Joe Wells who is autistic and had OCD - he's a comedian and has a great podcast on neurodivergent creatives, so I'm looking forward to reading this one at some point - it covers not just autism but ADHD, OCD, dyslexia, dyspraxia, etc.)


There are also some good books with parenting advice - e.g. I really like Luke Beardon's books - most recently on "Avoiding Anxiety in Autistic Children". I think he may actually not be autistic himself - but he's a Senior Lecturer at Sheffield Hallam leading one of the best known/respected Masters courses on autism and has really led the way in taking a more inclusive approach to autism research.

There is an autistic lady called Emily Lovegrove who specialises in bullying who has written "Autism Bullying and Me" which is also good, if your DD faces any issues like that. She actually didn't find out she was autistic until after she got into helping neurodivergent kids which seems quite common!

I haven't personally found the social skills books particularly helpful - as you say, it's really difficult to suddenly just start "doing" socialisation in a way that isn't innate. I do agree that some form of "masking" is almost inevitable if you're in a neuro-minority, and not necessarily harmful if it's done knowingly and with enough time to decompress and relax with people who accept and love you as you are - but I think it generally takes a bit longer to figure that out. However, one book that DD did enjoy a surprising amount was "Diary of a Social Detective" by Jeffrey Jessum. I think it's out of print (we got it at World of Books) and a bit American - but the idea is the author is an autistic boy who has learned social skills and uses them to help other pupils at his school to deal with particular social problems they are facing (falling out with a friend, not having anybody to sit with at lunch, or whatever - I can't remember now!) I found it a bit clunky but DD really liked it for some reason and still goes back to it occasionally!

EsmeWeatherwaxToYou · 19/07/2022 10:48

I would second Elle Mcnicoll

LightTripper · 19/07/2022 10:50

Sorry, one more thing: one of the authors above (Siena Castellon) runs a website called QL mentoring which used to do autistic peer-to-peer mentoring (pairing young autistics with an older autistic mentor). I'm not sure what ages it covered though, and looking at the website I can't see any details on the mentoring side - but it does look like there are some good resources more generally there, and it may be worth contacting her to see if the mentoring is still available as I can see on Twitter she was looking for mentors as recently as last year:

www.qlmentoring.com/

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