Primary School Auties 11: 2023 is here

[openupmyeagereyes]

Thread 11.

This is a thread for the parents & carers of children with additional needs. Most of us have autistic/ADHD children in primary school, but anybody is welcome to join us to chat x

Links to previous threads below.

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
Thread 9
www.mumsnet.com/talk/special_needs/4502988-Primary-school-auties-thread-9-spring-summer-2022
Thread 10
www.mumsnet.com/talk/special_needs/4592899-primary-school-auties-10-summer-and-beyond-2022?page=1

Hi @Jules912 im sorry to hear that you have had such a long wait.
I was very excited when I got the call for the appointment for paediatrician after 13 months of waiting!

Sorry you guys are having to wait such a long time for assessments. It can’t be easy.

Thanks - that's really helpful

I'm told the current wait in our area is around 4 years.

Hi hope everyone is ok, to the person who asked about DLA, you should definitely apply, my ds has had high rate since he’s been 3. (He’s 9 now) he gets low rate mobility too, although I do question that rate to be honest….

Ds is being a dick at school again.

He went swimming at school today, first time in 15 weeks, (always a reason why he hasn’t been, pools broken, swim teacher is sick, not enough teachers for the staff to child ratios etc etc, I’ve had to mention it 3 times now as it’s in his ehcp for him to swim at least once weekly! So missing it for 15 weeks is a total piss take and I’m sick of hassling them about it all)

So today, ds went in, did his 30 minute session, got out when asked, teacher dried and dressed him, he held the teachers hand to go back to the classroom. Got to the pool door decided to rag his teachers hand away and ran and dived head first into the pool fully clothed with trainers on too, then 3 staff spent half hour trying to get him out. They were going to phone me at one point, what do they expect me to do? Travel 20 miles to get him out the water 🙄

They sent all his clothes back in a giant clinical waste bag not even rung out and it’s soaked the taxi on the journey home and fucked my washer as it’s too heavy to spin, I rung it out and spun it before the normal wash and now my washer door won’t open 🥹🤣

They’ve said he can’t go swimming again for the foreseeable.

Also he’s spent the afternoon hitting all the staff and kids and according to taxi at 3pm they chucked him at her and ran away 😅

@RaisedOnADietofBrokenBiscuitsOh sorry it was you who asked about DLA, just been back to check.

I think I'm so used to to how things are at home that I'll struggle to understand what to put on the DLA form!

raised the Cerebra guide will help you understand the support & prompting that you do. The assessors will understand the NT baseline and how your situation differs.

Just put exactly as it is on the forms, they know what’s standard for each age. That’s there job to know all that because it’s that what your award is based from, do they need more care than a standard child of the same age, so (I think you said your ds is 7?) they will know what is standard for 7. So just write everything as it is at home.

So for instance, If I were to describe my ds now, at 9 years old, I would put he needs fully supervising at all times for his own safety, needs dressing, drying, bathing, he needs everything done for him as he isn’t independent at all, I would input all the care he requires at school, so he’s in a specialist school, small class size, 3 teachers to 8 children and lots and lots of 1-1 time, he goes by taxi needs a Pa in the back with him for safety, has a harness to keep him safe in the car,

I would list all medications he takes, explain about the night time care he requires, ie awake at silly o clock, despite being on 2 sleep medications, requires someone with him at all times he is awake due to supervision etc,

I would explain all the care he needs out of the house to keep him safe, I would explain what would happen if he wasn’t supervised (ie his immediate death 😂)

Just really spell it out, nothing you write is too much, send in as much evidence as you can, reports, copy of ehcp, I got ds school to sign the statement inside which said he requires 1-1 care and he was a flight risk etc, just back up as much as you say as you can.

You can ask citizens advice to help you with the forms they have specifically trained people to do this.

I never used a organisation. I used the cerebra guide open mentioned.

@RaisedOnADietofBrokenBiscuitsOh think of any adaptations that you make for DS. E.g. my DS chews every now and then so we have to buy special Chewelry. Packaging changing upsets him so we have to buy the same things. Same lunch, every day. Still buying water bottles at 7.
Re: care, does your DC need help over send above age related expectations? E.g. I still have to wipe bottom, help to get dressed (and offer choices in a very specific way so we avoid getting dressed seeming like a demand), watch v closely near roads, no play dates without me or DH, constant co regulation to avoid hyper episodes, strict routines that are also very long and require parental input, having to walk the same routes to get to places, making social stories for new places, not having any rugs or cushions as they trigger hyperness, etc etc etc. Go through an average day and be honest about how much care you have to give. It's a horrible form to fill in. What I did was, after I'd written down all the things my DS struggles with, I wrote another list just for me full of all his good points and strengths.
Great username by the way, are you a Pulp fan?? I've always been a huge fan! I'm seeing them this summer, v excited!
@danni0509 oh dear, DS was so close to having a perfect experience! Sounds like something my DS would do, the impulse is just too strong! Hope he's OK otherwise.
DS has come home with social stories about hitting and throwing stuff, sigh! I can tell he's ready for a break, i am too. 2.5 weeks to go!

That should say over and above, not send!
Good advice @danni0509 ,x post!

Sorry danni. So stressful to get this feedback. Likely though, if it wasn’t such a novelty he wouldn’t behave like that - ie if they took him every week.

I agree with Open, the novelty and the long wait probably made him more dysregulated Danni. How disappointing though.

I had a meeting re DS today with his therapist and adoption social worker that just went around in circles. A more senior therapist observed our therapy session last week and she felt that his behaviour (which was good that day) was more about ASD/ADHD/sensory or learning disabilities or something yet to be diagnosed (think that she was hinting at FASD) rather than trauma/attachment so perhaps the therapy should stop. I explained that I don't know the cause of some of DS's difficulties eg when he pushes over DD and his little cousins - is that sensory seeking coupled with lack of impulse control, lack of empathy and unawareness of how much force he is applying and poor cause and effect thinking or is it that a trauma response. In the end it was just left that we'll talk about it again next week.

I was wondering if any of you had ideas about activities we could do to redirect his desire to push the littlies over. I will have to dig out my copy of the Out of Synch child has fun

Sorry gone quiet, work v busy but I’m reading! Will reply more later but just on that Dimples, I find the more his whole body is regulated by ‘hard work’ activities the less he will do things like that. We had similar last Fri it was bloody freezing but I let him go on the trampoline for 30 mins, he was bouncing so forcefully and throwing his whole body weight against the sides. But was much calmer when he came off. In terms of specifically pushing, sometimes in the house we will do things like wheelbarrow walking on hands and standing on hands with support to feel that pressure. I think with my DS he doesn’t understand the implications of things and doesn’t understand how hard he’s doing them. I feel and have aways felt that the answer has got to be to teach him that you just can’t do that, but actually achieving that seems impossible. His desire to do it far outweighs any social stories or consequences. The so called professionals never seem to like my approach! When I said in the last meeting well he needs to understand that socially he just CANNOT we and poo his pants even if he personally doesn’t mind the OT looked at me like I had proposed chopping his head off and said something about children need to be taught the routine of toilet using so they get used to it as a routine rather than ‘socially unacceptable.’ 🙄🙄🙄

Uno I read a couple of things you said with particular interest around hyperness and triggers. Im forever trying to identify them. What do you mean by coregulation with DH exactly? I was interested to read about cushions and rugs, how does this work? What if you take him out and other people have them? DS had a good period but school remain saying he is (I’ll use their exact words) ‘excitable and bouncy.’ Often he will come home and really just want to run around/ charge around often banging into things, sometimes throwing himself on the floor or the sofa or so on before resuming. Jumping up and down most likely. Do you have that? What then would your co regulation approach be?

On the plus side in between being excitable and bouncy for the first time ever he’s started to show his ability in school, they are absolutely amazed at what he can do. He’s also started using an AAC. What I’ve found is that it’s actually helping his speech because he finds it easier to say the word if he can read it than if he can just hear it. So if I say to him do you want x, DS? Yes or no? He will struggle. But if he can press a button that says ‘yes’ but also has the word written on the button he finds it easier then to read it and say ‘yes’ back to me than if he just hears it

That’s fantastic news carrie!

Amazing @carriebradshawwithlessshoes !
DS is better now with cushions etc but when he was younger, I used to put them away at other houses!! We don't often visit family, they come to us as he's more settled.
Yes to throwing himself on sofa etc, less so now generally, but I redirect when I can to e.g trampoline. I also hug him in a big hug and he likes the sensation. I guess that's what I mean by co regulation, I try to absorb some of that hyperness so we can both ground ourselves again. Saying calm down is a trigger so that just gets him more pumped up! I liken it to DH telling me he thinks I've had enough wine, makes me want another glass! I think telling DS to calm down makes him think, they think this is hyper? I'll show them hyper. I think I understand DS the most because my brain is very much the same!! I just froze as a child, I didn't go hyper or run, but I remember the adrenaline and anxiety of being at school. But no one noticed because I was a quiet little thing. As a teen and an adult, if anyone ever told me not to do something, I'd think fine im doing that then. Its like a trigger in my brain. I still react badly to being told what to do, I've just learned how to hide the feeling until I'm alone and can process it.
Anyway, sorry to waffle on!! Just to explain that's how I often, not always, get how he's feeling, because fundamentally we're quite similar.

Just dashing for lunch with a friend but yes, that makes sense Uno…..

That's really interesting Uno and fantastic progress Carrie. We're regularly doing heavy work - it just never seems enough. But I think that's the thing isn't, with some types of sensory input his cup is never full and with others it's overflowing. I think that I am going to contact the private OT who works with DS at school each week to see if we could have a few sessions with her outside of school.

What is happening with your children's schools next week on the strike day? DS's HT seems determined to stay open despite nearly all the teachers being on strike. All children have been told to go in all day apart from DS's year and one other year group who are to go in for half a day (2 classes in each year so one morning, one afternoon). Clearly the TAs which I am sure includes DS's 1:1 are taking the classes and I am loathe to send him in. They have said if you keep your child off it is an unauthorised absence (think that is government policy).

dimples we are waiting to hear from our school. In your situation, and if I was able, I would keep ds at home. Unauthorised absence or not.

Our school have gone for the simple closing the class where their teacher is striking which means DS is in but DD isn't. She actually took it remarkably well for now but will see on the day. Mind you, Wednesday is a P.E. and PPA day and she's not keen on those anyway, and I'm slightly worried it'll make it harder to get her in in future.
If it had to be one not the other that way round is probably best. DS is as far as we know NT, but really did not cope well in lockdown.

Cheeky bastards.

Keep your kids off = unauthorised absence.

They take the day off = authorised absence.

Ds school close for any weather over 12 degrees and close for any weather under 10 degrees so yes they will definitely close. 😂

Ds school need no excuse to take the piss.

Actually not heard about ds school closing or not, but they will be.

Waiting to hear about DS' school.
Don't know what I'll do if they close, take the day as unpaid probably!

Like one year when ds attendance was 61% due to all the illegal part time hours that went on 4 years, never once had education welfare officer in all the years they did that, it’s so corrupt.

It’s a double standard isn’t it danni