Primary school auties: summer and beyond - thread 5

[openupmyeagereyes]

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

Thread 4
www.mumsnet.com/Talk/special_needs/3748449-Primary-school-Auties-into-2020-thread-4

@danni0509 I have no advice but just wanted to say I’m sorry it’s so crap for you at the moment

Ds ran off again today at pick up time and almost got to the road, I just caught him. I'm so teary tonight and still shaking. Done a social story for tomorrow. How can we keep them safe when they have such little concept of danger???

Oh @LottieBalloo that sounds so scary

I know I cant sleep thinking about it. Its not even that busy a road but still. I have a stinking cold too. He just thinks its funny. Done a social story and gone through it. Said if we do the step book (he calls his social stories step books) properly, we can have his choice of which way we turn to go home...which he will like. Just get so tired sometimes trying to keep him safe and he just has not much clue. And yet he can add double figures in his head!

Can you park on site?

We had a run of horrifying incidents and school wrote a supporting letter for her blue badge and now we park on site. She still has a tendancy to run but its less ground to tackle

Lottie ds runs away a lot, he doesn’t give a shit he could get squashed it doesn’t even enter his mind, he doesn’t get danger at all either, have you got a blue badge? We have had one for 2 years now. Doesn’t solve all the problems (the running away) but you could park a bit closer so it’s less distance for him to leg it. I park on double yellows all the time I did have reins/ wrist strap but he used to crawl on the floor in them like a dog so I just have his hand / arm tightly now.

Open glad ds had the flu spray, ds wouldn’t entertain it again and I got the school nurse on the phone asking me to re book, I said no, he refused at school he won’t have it so I’m not wasting my time.

Ds has been to the dentist this afternoon, he last went in March before covid and since his last check up he’s got about 6 new teeth through, he sat on the chair for the first time since he was a toddler he usually stands near the door and she bends down and has a quick check but he sat on the chair (only for a minute) he let her count his teeth and she got a good look in his mouth, all was ok she said his teeth look healthy which is always good to hear Bcos he’s like Willy wonka with chocolate, i worry about it especially now he’s got adult teeth, but I do brush twice a day, that’s non negotiable here and I only let him have a little choc bar (Kit Kat or similar) after his tea, were as before he would have Nutella sandwich for breakfast, penguin with his lunch bag then Kit Kat after his tea as it’s all he’d eat which was way too much, so i cut it to once a day, anyway it’s still the end of the world months after I started it and were most of our tantrums stem from but it’s tough. I’d never get him to have a filling so have to be strict.

Thanks all. Pick up today DS tried to go the wrong way but I was waiting right at the back so got him and redirected him using the steps from the social story. Bought him a Ribena to celebrate!
Yesterday he was dry all day but more accidents today bless him.
I really feel for you @danni0509 and @mumofsend as we are in a similar position, wanting a place at the local special school but apparently they have more applications than places so for now DS is in mainstream but in a separate space for most of the day as he cant cope with the loud classroom. Still, at home now chilling out under the weightes blanket, so that's nice.

Lottie how stressful. It’s awful thinking what-if isn’t it. You will at least be ready for him now and hopefully in time he’ll learn not to run off

danni well done to ds for his dental check up, that’s great

Early start today, ds ran downstairs at about 3:40

Yesterday I had a call with the LA EP. It was ok, fairly useful I suppose but I just feel they should aim to see children a few times over a longer period rather than just a one off. She basically said it’s ok for him to have more downtime in the afternoons when he’s more tired and that that’s quite common. We discussed what to do if he refuses to go to school - focus on the smaller, liked aspects; develop a script with the school; try and follow a school-like routine with work and not have it like a weekend day (yeah, right!). Prepare him for any changes in school routine in advance by working collaboratively with school and work backwards to identify underlying anxieties where it’s not obvious. She recommended a book called ‘overcoming your child’s fears and worries’ which I have ordered. She said the adults need to encourage his independence as he’s quite reliant on them. She also said we should move his annual review to the end of the spring term (from July) to allow better planning for transition and how elements of his EHCP will be provided. She will attend that so I’m hoping she may see him again beforehand.

I’m hoping we can get to the end of term without having to isolate for Covid and it dragging into Christmas!

Sendiass has arranged a meeting with school for the week ds goes back after xmas. She phoned me today, she is livid he’s still part time (as I am) she thought it was temporary (1/2 weeks max) she didn’t realise it was for the foreseeable. I had to explain to her what they’ve always done with him fobbing him off with part time.

I’m enquiring with a couple of other mainstream schools tomorrow to see if ds can move whilst he waits for specialist school. Probably won’t get an uptake but I won’t know unless I try.

I’m done with ds school, nothing will change they’ve discriminated against him for the last 27 months he’s been there. He’s done more part time than full time, final straw is not entering him for the phonic screening so it doesn’t reflect bad on the schools results, maybe if he had of done the hours he was always supposed to then he wouldn’t be so far behind. All I do at the minute is battle with them to make them treat him how they should of been doing in the first place.

Something that’s really (REALLY) wound me up this week, on Monday - ds goes in through a different door to the other kids they call it ‘reasonable adjustments’ so he avoids the noise, which is just another name for not wanting him making a scene in front of the other parents every morning so he goes in separate. Well Monday the gate to his bit he goes in was frozen shut so his 1-1 came out and we tried to unstick it but it was hurting our fingers so she said I’ll have to get him through the other door (same door as the other kids) so she asked me to walk him around, well when I got to the classroom door ds class teacher was stood giving out xmas cards to the other children (not for ds - he hasn’t had any yet again) so his 1-1 got his hand and ran (actually ran) through the classroom with him and before I’d even walked back around passed his bit the door was open and he was already outside playing.

The gate was frozen shut because it was so cold and he’s slung out there to play straight away and she ran him through the classroom so he wasn’t disturbing any of the children.

It’s such a disgrace.

I’ve emailed his class teacher (he hasn’t had a parents evening at all) I don’t know what levels he’s working at as even on his end of year report last year it didn’t mention anything, not even working below, nothing! It was half a page long with no academic stuff on and the senco didn’t know at his annual review, I asked, she was going to check with the class teacher but never did let me know.

So I’ve just emailed, to ask why no parents evening? (every other local school has had one - I’m that sad I checked) and told her I want an up to date idea of what levels he is at and any recent progress he has made.

She can take it as shittily (even a word?) as I meant it.

They probably don’t even know what level ds is at.

I know myself what level he’s at it’s not hard to check, but would just like an idea from the schools perspective.

How frustrating @danni0509 moving him if he will cope with it may definitely be a good idea. Often just a different attitude can make a world of difference to a child in school. I know our aim is to potentially just get her to a position she's OK and happy until we can move.

Re the levels. DDs school told me for her first year she's spot on academically, told her peadiatrician she was fine. Got her levels 3 weeks back.. 2+ years behind across the board.

DS has his ed psych assessment meeting with me today. Keeping everything crossed for her report

Ds never met any expectations in reception not in any of the 17 areas, they say he’s on par with a nursery aged child but he can read level 2 books which 3 and not many 4 year olds can do, so they don’t make any sense what they say.

I know he’s on p levels across the board just interested to see exactly what progress if any has been made since September (that’s what bloody parents evening is for) but they’ve just missed it off this year, they are a joke!

Hope today went well for your ds x

Could he be hyperlexic? That would fit! My friends little boy is developmentally behind a cross the board but can read (but not understand) anything!

I don’t think so mum of send, it took ages to teach him to read and he does struggle. He’s just on yellow band now so level 3 and he can barely read any words as they are longer and the books are busier so he struggles to pay attention it’s become a battle again getting him to do his reading x

I’ve just googled the education welfare officer email address for our area and I’m going to write her an email when I’ve got ds to bed 😂 when I get a bee in my bonnet!

I sit and wind myself up reading stories, I deliberately search Google for them and when I read the guidance that it’s not legal and instead discrimination it gives me ammunition. Shouldn’t be still having to put up with it all this time later.

Danni sorry to read that school are still being rubbish.
MumofSend hope that things get sorted soon.
Open I agree, it would be better to get more regular input from EP.

Not having a good week here. After a really good few months of toileting DS is having accidents right, left and centre. He is also trying to scare DD all the time and is damaging stuff constantly. I understand why he is behaving like this but it doesn't make him easy to live with. I have had DS, DD or both of them with me 24/7 since March and it's taken its toll. I have even toyed with returning to work from adoption leave earlier than planned to get a break. However, I know that I would regret that too.

Sorry things aren’t great dimples, having same issues with ds with toileting he hasn’t wet his pants for weeks (still soils often) now he’s back to wetting aswell. I agree with you about the you know why they behave like it but it doesn’t make it any easier to live with. I do have a lot of sympathy / empathy what ever word I’m looking for for ds I do genuinely feel sorry for him and understand his world is completely different to mine and I do my best to understand him and help him but it’s still so difficult to live with so I completely get you there. Ds is constantly damaging stuff aswell, it’s no fun is it. I hope you get a bit of peace once they are in bed for an hour or two, bless you x

Ds dinner lady who looks after him (which im kicking off about at this meeting in January as I’m really unhappy with an untrained inexperienced person looking after him - no wonder they are having so many problems!) keeps coming out like - no not had a great morning he’s kicking me, kicking his other support staff, he’s wet his pants again, put his hat down the toilet done this done that rar rar rar. In front of ds, loudly aswell. She’s done it a few times with various complaints and she did it again today.

No need for it. He doesn’t even understand I don’t think but it’s so negative, why say loudly he’s wet his pants again, it’s humiliating for him.

Just a quiet word or even saying it to me but in a tactful way like oh check his bag mum or something like that to give me an idea. (I know when he’s wet though I can clearly see he’s got changed trousers on)

Then he ran when she closed the door so I sprinted after him but he picked up speed and by the time I grabbed his hood he was about 2 seconds from the main road which he would of ran straight into, as he got closer to the road I chucked his bag and water bottle and ran as fast as I could screaming for him to stop, I collapsed on the pavement with him and sat there for 5 minutes my legs were so shaky and when I got him into the car I had to sit for a few minutes before I drove off as I felt all weird and my feet were trembling like mad on the pedals.

@danni0509 hugs on the running!
DS' first preschool was like that, v neg, telling me he had to be better and get better, etc. We had no clue about asd then but I took him out and wrote a horrible letter about everything (he was 2.5). Second preschool much better, attached to a school, senco etc. What they're doing at your DS' school sound v much like the people at our first preschool, ignorant and not sen trained. But now it's more damaging as your DS is older, could well understand what's being said, could be making him stressed but then he reacts in unusual ways (like my DS), and it's undermining to you. She's acting like your DS has a choice in how he behaves, but it's not a choice is it, it's a reaction to the school not meeting his needs. If he was having his needs met, he would be calmer and happier at school. Email and demand a meeting with the senco. Our DS hasjyst started sensory circuits, which seems to help, in terms of emotional regulation.

There must be something in the air. Ds ran off to the car when I picked him up yesterday. He didn’t stop when I shouted to him and ran straight across the entrance to the school car park without looking. Thankfully there’s a guardrail along the road outside the school entrance that stops him running directly into the road.

for those struggling. Rubbish day here.

I finished my early bird plus course today, 7 sessions in total, it was all pretty much standard, I’ve mentioned on here before so won’t go into it again but I think we all on here pretty much cover the recommendations anyway.

But one useful thing that I took away was (I’m guilty of giving in for a quiet life sometimes, I don’t with everything deffo not! but sometimes I have too many battles to pick and feel exhausted etc so take my foot off the gas and ignore quite a bit) but the ep said it’s ok excusing ds for xyz now but imagine this in years to come when he’s much older or him doing whatever behaviour in public or at someone else’s house when it can’t be excused or ignored etc which he’s guilty of plenty of them as what you see with ds is what you get so he often embarrasses me in public and other peoples houses but he’s 7 now but do I really want these same issues when he’s 17?

Certainly not!

So one of my examples sadly have too many is my ds absolutely hates anyone sitting on the sofa with him so if you sit next to him he’ll kick you, scream at you, start chucking all the cushions off, gets to the point ignoring doesn’t work (impossible to ignore his creations anyway) and he won’t let you get a word in edge ways and is actively shoving you or kicking you off the sofa as he can’t tolerate you being on it with him and then I don’t actually want to sit next to him with what he’s doing anyway so I get up and go in the kitchen and then he instantly stops (gets exactly what he wanted) he does it all the time, so I just get off the sofa or actually now (this is ridiculous!) but I will sit on the floor rather than sitting next to him so I’m not starting him off.

But that actually isn’t teaching him anything so it’s figuring out ways how to stop that, and then add in all the other issues your having and do the same for those, coming up with solutions and tackle one at a time, so I have pages of things to tackle 😂 but starting with the bigger issues first and working down the problems. It might take months to sort one issue but only when you have do you move to the next.

Same with the car radio he hates it so I don’t have it on, but we got a taxi to the train station one day and the driver had the radio on so he’s head butting the taxi seat, screaming for him to turn it off etc.

I think it’s just normal to come up with solutions for things we are experiencing I do it a lot, but it’s more about not ignoring the things that you don’t see a problem with or are ignoring because the ultimate goal is getting them ready for the real world when not everything can be adapted for them, so I might sit on the floor so not to start him off and not have the radio on in my own car but in someone else’s house they won’t accept sitting on the floor or someone else’s car they won’t have the radio off, so it’s getting him to a point were sitting next to him on the sofa is just a normal things to do and having the bloody radio on is ok too. (Trust me i over compensate for it when i have dropped him off I’m like a girl racer blasting my tunes on the way home 😆)

Sorry I’m shit at explanations, but really made me think actually yes I let him dictate to me too much and pacify him and tread on way too many egg shells to keep him calm and there’s many things that I shouldn’t be letting slide as it’s doing him (or me) no favours in the long term.

Sorry for your rubbish day open

Shame we don’t all live close, we could set up a baby sitting club where we all take it in turns to have each other’s kids, I can’t guarantee you wouldn’t be bald by the morning but id return the favour when it was my week

X

Sorry Lottie I missed your post, the senco is going to be at the meeting in January, she is usually quite good (she’s really the only one I have good communication with these days) she’s off at the minute for personal reasons but is back in the new year, they do do a lot of sensory stuff with ds (not called sensory circuits) but it’s very much the same x

danni I’ve heard the 10 years thing too but as a general parenting tip. As in take a behaviour and add 10 years - do you want to deal with it now or in 10 years?

With something like your ds’ sofa or radio issue there might be a gradual exposure thing that you can try but the best path is not always clear for all behaviours is it? So for instance ds today hit me and pulled my hair because he couldn’t get his way. He’s not done this for quite a few weeks. I do my best to stay calm and just prevent him from doing it but it’s so bloody hard when he stays in a temper for 20 minutes or more and also disrupting dh who’s trying to work. I always end up feeling that I’ve not handled it well but I don’t know a better way. Parenting advice seems to be for those children who transgress, are supported by a parent and then cry to release their big emotions and the parent comforts them. It doesn’t work like that with ds.