Primary school Auties: into 2020! - thread 4

[LightTripper]

This is the continuation of the thread for parents and carers of autistic children in Early Years and KS1. Most of us are parents of children in Reception or Year 1, but all welcome!

Here are the links to the previous 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

Thanks for the shiny new thread Light [santa]

Ds went to school with no issues today. Long may it last!

Thanks for new thread Light

That's fantastic open!

Hi. Hope everyone is ok. Might download the app again, I’m bored not posting

Ds is doing ok, he’s gone on a school trip today an hour away he’s there for the day, they phoned me at 10.30 to say they had arrived safely and he was enjoying himself. He has 2-1 when they leave the school grounds so I don’t worry so much, they are really good with him, the head teacher has followed the coaches in her car and has a box of toys for ds packed into her car should he need to chill out. So I hope all has gone ok, I’ll know at 3pm!

Ds having a good few accidents (wee / pooh) school had to change him 3 times on Monday, they haven’t changed him that many times in the last month combined, having the same here, he’s waiting for his bedtime nappy and then poohing it. One step forward 10 steps back as always.

I got his final ehcp this week after his review first week of September. Not sure I can add a pic of the main site I might have to do it off the app but just shows his progress.

Be back later. X

Thanks @LightTripper

Thats Brilliant @openupmyeagereyes

@Littleswede We have a communication book but they refuse to write anything but his accidents in it as it apparently takes up way to much of there time thats was after they had said that he had a ta in class for his needs.
I also agree With light that trying to record them would be good we tried it a few times but ds attacks anyone who tries to get there phone out even if you try to hide he seems to always find the phone.

Ds is doing afternoons. School arent happy. The meeting on monday was silly in changed from a update meeting to a meeting about his bowel and bladder in the course of that morning and the time changed from 11:15 to 11 that morning to there was only the school and senco that seemed aware of the changes. The incontinence nurse surprised me by saying things like he shouldn't need to go to the toilet during lesson time and that them taking him to the toilet when he gets to school before break before dinner after dinner and before break again is to much which is 5 times and in between these 5 times at school hes wetting and soiling. But the school and incontinence nurse where only really bothered about him not being in school and how us not forcing him in was us not doing what was best for him. The senco didn't like a question my dad (ds grandad) asked then turned it back to a this is only about his bowel and bladder and shut it down.
I am sticking to my guns and working with ds though and hes going in 1 till 3.15 school are tried to push as he went in ok for first time yesterday that he would be fine to go back to full time at 9am it didnt go as they wanted and i refused to let them push it and lose what we have gained i have told them the best steps forward are to work back wards like going in at 1 the slowly work back to 9am over a period of time. I have tried to explain that ds's anxiety is heightened due to lack of control and that he finds the structure of year 1 to much as it is all out of his control and that we need to work cleverly to get him able and comfortable and think hes in control when really we are and its not easy.

How is everyones dc's doing at the moment?

That's ds updated tracker in his ehcp which I received this week. School sent it to the LA as part of the review and I got a copy.

Obviously he's still behind given his 6 yrs old in 8 weeks but he has made a lot of progress. Think they said at his review his mostly working at a 3.5 year to a 4 yr old level now.

Whoop whoop to your DS's fantastic progress Danni! Great to hear from you. Sounds like the school trip is going well too. What a supportive HT to bring a box of toys for your DS. Hope the toileting issues if just a phase and thing improve soon.

Harley Good on you for sticking to your guns with school. Shame they are still so unsupportive and difficult. can't get over how schools are so unreasonable!

I have recorded the meltdowns in the book now, we had some last night and a few emotional outbursts this morning. It's all in the book now.

Spoke to a lovely and supportive lady from the Autism Team (I know through work that she is quite senior too) and she is finding out who our case worker is so that they can get in touch with us asap. She said that she wasn't surprised that DD find lunchtime difficult, and school should have support in place for this. It was actually the same CAT (communication and Autism Teacher) who came to see DD a couple of years ago when we were going through the diagnosis procedure. She write a report on DD for the paediatrician and she remembered meeting DD! Off for the school run now!

Hi everyone. Sorry a bit behind in keeping up with the thread. Thanks for the new one light.

Brilliant job danni, you must be so proud of ds!

Sorry you are still having problems with the school Harley.

It sounds like you are really on it littleswede. I hope it means dd will get more lunchtime support soon!

We've been having ups and downs here. Ds has made a friend in his class, which is lovely. So I think we're going to try and organise a play date, but nervous about that.

Our annual review is finally going to panel this week, so hopefully we'll find out whether we can move him to the new school in September soon.

I just found out that the class trip this year is going to be a nearly 2 hour long play! Not sure how many kids in reception will make it through that!

Liv live that your DS has made a friend. Best of luck with the review meeting this week, fingers crossed! 2 hours is surely too long for a bunch of 4 and 5 year olds DD would definitely struggle with that for sure.

Lovely, not live

Thanks littleswede.

That's what I thought, they seem to think it's fine as it has an interval. I'm really not sure if there's any point in even trying to wrangle ds into a theatre

liv aside from anything else - the toilet breaks 😱

danni ds has improved across all areas, that’s brilliant. You must be so proud

Post properly later.

danni I hope ds enjoyed the trip. Very impressed with the HT taking toys for him. They seem to have really stepped up this year. It seems neither of us won the euromillions this week - I’ll keep trying!

Harley I’m sorry the meeting didn’t go as you thought and that the continence nurse was not helpful. I guess for ds to feel comfortable going into school they need to be making changes, keeping him off won’t be enough in and of itself. What do you think the school should be doing that they aren’t?

Little glad you seem to have found some support, hopefully they can help.

liv how lovely ds has made a new friend. I hope a play date goes well. Fingers crossed for a place in the new school - keep us posted.

Ds was upset when I collected him from school today. Over a toy I think, I need to get the full story tomorrow. We went to the dentist and he was a star. We had a long wait as they were running late and he was fine and then let her have a good look in his mouth. So far he’s always been ok but you know how things can change...

He’s still refusing to go out at school. I don’t know how we get him over that hump.

Outside that is.

Hi, everyone

Thanks for creating a new thread Light

Glad to hear of your DS's progress Danni

Sorry to read that you're still struggling with schools Harley and LittleSwede

Liv fingers crossed that you get the right outcome

Open that must be a relief

My biggest concern at the moment is that DS has started pulling his hair out again and now has a large bald patch. It really upsets me. We saw CAMHS about it a couple of years ago and they advised to carry on doing what I was (upping sensory activities and not making a fuss about it).

In better news DS has become a spellings star. I can't remember who suggested Squeeble but thank you! DS loves it and as been getting 10/10 on spellings each week at school since we started using it. It is quite amazing. Two years ago the Ed psych assessed his cognitive abilities as being on 1st centile. I would never have thought this possible. In other jaw-dropping breakthroughs after 6 years of avoiding any mark making activities DS has decided in the last few weeks that he likes drawing and writing (it's mostly scribbles but he's happy!)

dimples it was me that suggested Squeebles. I’m so happy it’s working well for him, what a

Sorry about the hair pulling though, it must be so distressing.

Thank you Open

@open they don't acknowledge his anxiety at all. They give him zero support. They don't even ensure he understands whats going on. They don't use the visuals he needs at all. I think they need to support him use his visuals. They don't even use the the SALT tool kit that was provided. I want them to meet his need help and support him instead of being so dismissive and refusing to acknowledge his anxiety and his autism.
I havent been keepin him off. We have been trying to go ds has been find it to difficult and running away. When the head or receptionist suggests to phone his class for his ta or tecaher ds screams no don't get them as hes scared as they grab his arm and pull him into school and have continued to tell him of for being a minute or so late or get annoyed when hes struggling. I want them to support him properly.

Sorry Harley, I didn’t word that well.

@open no need to be sorry i didnt mean to come across like that. Feeling abit exhausted and to top it off school are going to be even more annoyed as ds has be sick and having diorea (sp?) Since 6 so he won't be allowed in the rest of the week. I am gutted to he had gone in at 1pm okish last 2 days as well.

Oh Harley it's relentless isn't it. Two of our local schools have closed today due to the norovirus

Hello all

Thanks light for opening the new thread.

Dimples I'm so sorry to hear about hair pulling , that's very tough to witness. The spelling and mark making progress sound fantastic.

My DS has had a second incident hitting the other autistic lad in his class. I'm very low about it, it's just never a scenario I ever imagined my child would be involved in. We're trying to unpick what's going on. The other lad pushes his face into DS's face and hits him, pushes trucks into him etc. But I think the other lad does this to all the kids, it's just that my DS gets locked into responding and it deteriorates.

DS says the teacher's told the class the lad "has a different brain " and that's why he behaves as he does. DS has somehow translated this that the other lad is a "baddy". He tries to categorise everyone. It really hurts my heart to hear my DS so busy discriminating and writing off another autistic child. The irony is painful.

Mapland Ds has had a few incidents at school recently, he grabbed a girls face over excited and marked her face and when she cried (he doesn't like crying. Well - now I'm starting to think he actually does like crying and him doing what he's doing is to provoke the reaction he's after! Ive been noticing a pattern!) he then grabbed her by the neck. I got collared about that at pick up time.

Then he's been making a beeline for a particular boy, pushed him over in the playground and the boy grazed his knees, and last week ds pushed him from the top of the climbing frame, the boy fell off on the floor.

And this week he's been spitting at school, I was pulled about that one on Monday.

I feel it's one thing after another with him. Although to be fair to school they aren't at me about it more just letting me know, they are not hassling me about his behaviour.

He always says 'we don't hurt our friends do we' that's what school tell him they always chat to him about it, then I reiterate that at home and tell him to be kind and careful, his dad always talks to him about it too so he's getting it drilled in from all angles etc etc then he has one of those days and goes on a rampage mowing all the class down. This is why most of his peers are shit scared of his unpredictably. Which I totally understand why.

Just alienates him even further him doing it though because then no one wants to play with him.

I do hope one day (soon!) he learns to keep his hands to himself. I am so glad I take ds in through the office at separate times, I'd 100% be the most hated parent on that playground!

Dimples sorry to hair about the hair pulling, ds is a skin picker, he scars himself and has given himself 3 skin infections needing antibiotics since the summer. Absolute nightmare to stop him so I can imagine how your feeling. The minute ds has any sort of scab or cut he digs it all out and it gets manky and infected and needs the drs. He has had a scab on his arm about 8 weeks now that's not cleared up because he won't leave it alone it was bleeding after his bath because he was picking again and it's spread a bit, only a matter of time before that one starts oozing!

Harley I'm sorry ds is poorly, hope he's better soon. Is homeschooling an option for you? (It wouldn't be for me, totally selfish reasons on my part ie needing the break more than anything )

Liv ds wouldn't cope with that, no chance. He's been on a trip today to a museum and he had to go play with a marble run and pirate ship outside because he was bored and wouldn't sit and listen. To be honest I get bored sitting still I would probably struggle with watching something for 2 hours, my legs ache and I get irritable and need to move around

Little swede ds has plenty of meltdowns, does anything in particular trigger dd's? Can be anything and everything here. Still none the wiser what actually sets him off. I've said this before but even looking or breathing near ds will cause holy war! If he's in a mood it doesn't take a lot.

Open hows ds sleep? And reading? Ds sleep is still hit and miss mostly miss and the reading is just the same, still struggling with level 2 books. He sees so many words on a page now and just switches off and won't engage. His reading book at bed time had 17 pages that will probably take us a month to read

Unpredictably = unpredictability.

Dimples hair = hear. Don't know what I'm doing tonight!

Harley does ds have a diagnosis? I’m sorry I can’t remember. Is he even on their SEN register? I honestly can’t imagine a school being so unsupportive of a child’s needs, they flip flop all over the place.

Do you know any other parents with SEN children that you can talk to to find out their experience? I hope ds is better soon.

MapLand I’m sorry that you are low about ds hitting, hopefully it’s a phase that will pass. There are definitely incidents of NT boys hitting in ds’ class so it’s not unusual at that age. Ds has not hit any other children this year that I’m aware of but he’s had three instances where he’s hit his TA and that makes me sad. They will learn emotional regulation, it just takes time. As for the teacher telling the class this boy has a different brain, I don’t think that’s ok. Even if it’s technically correct it’s othering. Last year a child in a different class told me, just outside school, that Ds had something wrong in his brain and that’s why he messed about (ironically I think that dc has ADHD). I spoke to the HT about this (I didn’t tell her who the child was) to get more clarity on what the message is at school and she was very upset. She said no adult would use that language and that they talk about all children having strengths and weaknesses, that she doesn’t find labels effective. In this instance they could simply say X is still learning about y and z, that sort of thing.