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

Interestingly @danni0509 about time, DS is obsessed with it, he taught himself how to tell the time years ago and now clock watches all the time and mithers anyone who is more than one minute late! I wonder if it's because he can't really tell what time it is roughly so he gets fixated on clocks to help.lessen the anxiety.
Sorry @carriebradshawwithlessshoes I forgot to say that they do that attention autism game at DS' school, they call it the bucket game, and DS' old school used to do it with him too. He gets very excited when he talks about it! It's about building joint attention. DS us much better with joint attention now but, with me, it has to be an idea of his so I get lumbered into playing elaborate pretendy games with maths cubes having various jobs etc and if I look at my phone or something, I get told off by DS for not paying attention ha!
With DS, when he was really little, the first thing I did was that I sat with him and just copied what he was doing. I let him let me into his world on his terms. That seemed to help a lot. DS has lots of stock phrases too that he picks up, to be fair is his new favourite phrase! That and shouting 'silly' in a pretendy grumpy voice when someone does something he doesn't really understand!
His new school are using these regulation colour areas to help the children identify which colour they feel and then they have options to calm back down if they need to. It's this sort of thing that I'd struggle with if I HE. And also he has a right to an educational experience and building relationships away from me is important. I read that 70 % of pda kids aren't in school fulltime. Shocking, isn't it?!

Magrat is it the incredible 5 point scale for the colours / emotions? Sounds familiar, if so ds school use this too x

Very similar to danni's DS with how good her use of echolia is. She will say something and I can tell you exactly where she's picked it from. She only tends to give it away when the phrase doesn't quite fit and she hasn't got the ability to adapt it so it does fit.

Luckily her SALT and OT both picked it up and I can see it more and more when I look at 5 year old DS just how different their speech is.

DD is PDA and technically in full time but she isn't in in full time.

DS broke my heart last night as he was sad he has no friends. I'm so used to him being my rock solid happy one its blindsided me.

@carriebradshawwithlessshoes although DD is verbal I can see some of what you say about being more social when she's not doing something. When she's engaged in an activity she is absolutely 200% focused on it as someone said up thread. And then it's very hard for her to switch. She loves her school timetable and often looks at it at home, and I think it's because she knows exactly what she needs to think about when, and for how long. We still really struggle to get her attention when she's doing something though (particularly watching TV or reading). It's so unsurprising looking back that she never really responded to her name (even if it was less obvious then what exactly she was so engaged in instead). I really like this tendrils cartoon to explain what is happening. I know it's very different in lots of different ways but this feels like one of those underlying commonalities in brain wiring across all our kids.
the-art-of-autism.com/why-its-hard-to-switch-tasks-a-comic-strip-explanation/

I feel like just getting sufficient of her attention for her to actually realise that she needs to retract the tendrils (and getting her to agree that she needs to ) is the skill I am lacking (and the fact that I still miss my name and completely don't hear/register people as an adult doesn't give me huge hope that this is a winnable battle, though I think I'm better now at somehow keeping my radar on for possible outside interruptions when I'm doing something).

I'm really sorry to hear DS is still struggling at school @danni0509. Good that you have the meds appointment but it does sound like there is a lot of need to control there too, which must be something to do with anxiety and maybe lack of boundaries to make him feel safe at his last school like you say. Hopefully you can get there with time but it does sound like meds is probably not the full answer.

I'm glad DS got into school @openupmyeagereyes and had a good play in the park. Hope it resulted in a good sleep too!

@MagratGarlikInDisguise I think that thing of masking/managing and then everything building up over time and getting too much is very common. I was reading DD's old Dx report earlier in the week (as her new school had asked about it - am thinking about sharing it with them though it's so old now), and was struck with comments about her getting upset at nursery about things that neither they nor she could really identify - but clearly something had just been the straw that broke the camel's back. Sometimes she was able to tell us later at home something that was bothering her - but she wouldn't have said anything or given any indication at nursery that it was a problem.

Mumofsend that is so sad, hopefully school can support him in this area.

Light isn’t it funny how with our dc every single little thing gets picked up and analysed? I think that for toddlers and preschoolers it’s very common for them to get upset for seemingly no reason, when in reality it’s just the tip of the iceberg. As it’s said in Uniquely Human, all autistic traits are human traits. The specialist teacher once made pains to point out at a meeting we had with them and school that some of these behaviours were only being discussed because ds was being focussed on, not because it was only him doing them.

Ds slept ok, he’s sleeping till around 5 most days which is great compared to other periods. I’ll take it while it lasts! He’s gone in again today which is great. These are the best couple of weeks we’ve had since the end of May.

That's really great @openupmyeagereyes - keeping everything crossed it continues!

I really must read that book (I think I've bought the ebook but even my physical book pile is not getting read!) I totally believe that all autistic traits are human traits. It's almost like autistic people are extremely human IYSWIM - displaying some traits in a wider range of situations than most people would, because of processing sensory information differently!

Oh sorry I missed your post @Mumofsend. Definitely worth talking to school. Maybe it was just a bad day, but maybe they can help scaffold some good interactions with the other kids?

Yes, absolutely. Or displaying them more strongly or for a longer period. Probably this is why we see autistic traits in ourselves even if we don't think we are autistic. They are just human traits to a greater or lesser extent. Uniquely Human is very good, I read it on the Kindle app on my phone which I use a lot.

I've been buying and reading lots of books with ds. He's still quite resistant to formal work so this is great way to get learning and ideas in without him realising. Having said that we did do two very short pieces of homework this week without any complaining.

Joining here for a hand hold as much as anything. We've been struggling with 4yo dd's school (including seatbelt or wearing unifrom) refusal since day 2 of starting reception. She has no diagnosis but has always had OCD/ sensory issues exacerbated by stress adapting to new or less structured routine. We've always coped with her quirks but this is something else. Young Minds have been brilliant, as have the school and the early intervention family worker. I'm currently reading the Explosive Child which is really helping me understand her better. Once at school, she is reportedly doing brilliantly and is very sociable. At home, it's a different story.

Hi @Whatafustercluck!
Well, it's our turn for the pcr test today! DS did so well but was upset. No school tomorrow while we wait for the results so I'm wfh only 3 weeks into new job argh.

@Whatafustercluck ah I could have written that post two years ago when DD was in reception. Massive handhold.

My DS is now in reception and also has sen and ehcp.

@LightTripper

He sounds like he had a much better day today and has come home much happier. We can only think that he's taken something to heart and overwhelmed him as nothing significant happened. They've said he plays alongside the other children rather than with but that's to be expected with his social communication.

Magrat fingers crossed that you get speedy results like me. On Monday our results came through within 8 hours of leaving the test centre.

MumofSend glad to hear that he had a better day.

Welcome WACF, is he attending full time?

Yes she's attending ft @dimples76

Dimples 8 hour turnaround is unreal.

Hi to what a cluster fuck x

I’m waiting for ds taxi and then need to nip to Tesco, I’ve bought a book to start reading, it was delivered last night from Amazon, it’s called freeing your child from anxiety, it’s got really good reviews and it’s a big thick book so hopefully it has some useful info in! Going to try have an hour reading before ds gets home.

Ds has been v angry and controlling me for 3 hours since he got up despite my best efforts to calm him down and my nerves are shot to shit this morning.

If my partner treat me like that he would be out with his bags and the police would be arresting him but when it’s your child it’s just ok to brush it aside and you’re expected to carry on as normal everyday.

What a life!

dimples eight hours is amazing, I though mine at twelve was quick last year.

Magrat I hope your tests are negative.

Whatafustercluck welcome. Seatbelt issues are something that a few of us have struggled with over the years (me and danni at least). Usually recommended are the Crelling harnesses which are a five point harness that you attach to your seat. You still need to use the regular seatbelt over the top for safety but it keeps them in their seat. You need to buy a specific model for your type of car.

danni I hope the book is helpful, let us know. Fingers crossed the change in environment shifts ds' mood before school and he has a good day.

Ds has gone into school today so he's done four days this week which is pretty good. He went in every day last week although an hour later one day as he refused to go in the door the first time round but changed his mind later. We had a nice afternoon together at a local park yesterday, feeding the ducks and playing. He was awake at four this morning so a bit earlier than usual and typically my day to get up...

Welcome whatafustercluck!

DS behaving very strangely, has just been sobbing on and off all week. He seems very tired and looks awful, pale, miserable. Went into the office yesterday (first time in months) and school called to ask me to get him.

He’s no temp, not Covid, eating bits ok, just keeps bursting into hysterical tears. Slept 11 hours last night, got up, had a bit of breakfast then climbed back in my bed and slept for 2 hours. He’s now falling asleep again in between crying.

So hard that I can’t ask him… he’s been like this off and on all week. At what point do you ring the docs and say I have no idea what’s wrong with my him but can you look at my child? Or soldier on???

carrie I would phone the doctor, especially with him being non-verbal. I presume he’s not holding his tummy or head and going to the toilet fine?

I would see how he is over the weekend and then phone Monday if he was still the same, I remember when ds was non verbal / not communicative, you literally have to go through everything like they are a baby don’t you. Ds is often out of sorts and I never find out why, it’s so frustrating. I hope he’s ok

Ds is better at explaining obvious illnesses, tummy ache / head ache now but often it’s still a guessing game.

He told me this afternoon he had tummy ache (he looked like he was sweating) so I gave him some neurofen and put a a nappy on him to have a Pooh (he gets tummy ache if he needs to go and will only go in a nappy) he said I’ve got tummy ache because xxxxx (same child who keeps hitting him) hit me in my tummy today and knocked me over onto the floor!

I don’t think it’s related to that, as methylphenidate can give them a tummy ache and he had one last week too although that could be a coincidence, but he’s joined the dots his tummy hurts and so and so hit him there.

Not happy about what he told me though! But then ds told me last week she hit him that day and then his teacher was like no they are separated at all times so I think ds is exaggerating a bit or getting confused as in she hit him but not necessarily the day he’s said it was.

He was very specific about her hitting him in the stomach though same as when he was specific about her throwing a drum at him!

Carrie what about teeth? Those big back fuckers play havoc and take ages to grow through? He’s about the right sort of age.

danni I wonder too if he’s thinking about an incident in the past.

Just had to send my annual ‘please send ds differentiated homework please’ email. Why do I have to do this every year?

liv does your ds get homework?

No he doesn't open. I think it would be very challenging if he did because school is very much school and home is home for him. The school does give us access to all the programs they are signed up to so we can do online reading/phonics etc but to be honest I've not really tried.

Danni ds often talks about things in the past as though they are present. I definitely think his experience of time is very different to mine.

Got DD's third final EHCP through since Sept 2020 yesterday. The school receive 26k per year for her

Are you in London Mum?
We had our final one last week. The last two years have been a good turnaround. The previous year was eleven months. Ds’ funding is £15.3k.