Thread 13: autism and any other additional needs A/W ‘23

[openupmyeagereyes]

Thread 13.

For parents / carers of disabled children, autism, adhd, and all other related neurological conditions. Most of us have children in primary school. But everybody welcome!

Chatting about anything and everything related to SN!

Links to previous threads.

Thread 12
https://www.mumsnet.com/talk/special_needs/4816294-thread-12-autism-and-any-other-additional-needs?page=1

Thread 11
https://www.mumsnet.com/talk/special_needs/4711291-primary-school-auties-11-2023-is-here 

Thread 10
https://www.mumsnet.com/talk/special_needs/4592899-primary-school-auties-10-summer-and-beyond-2022?page=1

Thread 9
https://www.mumsnet.com/talk/special_needs/4502988-Primary-school-auties-thread-9-spring-summer-2022

Thread 8
https://www.mumsnet.com/talk/special_needs/4422100-Primary-school-auties-step-into-Christmas-and-the-New-Year-thread-8

Thread 7
https://www.mumsnet.com/talk/special_needs/4303826-Primary-school-auties-summer-and-the-new-academic-year-thread-7

Thread 6
https://www.mumsnet.com/talk/special_needs/4166833-Primary-school-auties-spring-2021-and-beyond-thread-6

Thread 5
https://www.mumsnet.com/talk/special_needs/3953023-Primary-school-auties-summer-and-beyond-thread-5?page=36&reply=104240251

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

Thread 3
https://www.mumsnet.com/talk/special_needs/3628263-Auties-transition-to-Year-1-thread-3

Thread 2
https://www.mumsnet.com/talk/special_needs/3451020-Reception-auties-2018-19-thread-2

Thread 1
https://www.mumsnet.com/talk/special_needs/3080753-DS-with-ASD-starting-school-Sept-2018-I-am-feeling-overwhelmed

You’re right there liv

Hope today is a better day @openupmyeagereyes

that thread was indeed uplifting @carriebradshawwithlessshoes altjoufh the OP’s second post played into my anxiety that I should be spending all my time with DD trying to improve things and am selfish to be working etc.. but overall indeed a nice story to read

I am almost certainly jinxing it by writing this but DD has now slept ok ish (or at least no loud crying) for 4 nights in a row!!

We did indeed have a better day, thanks. As I said yesterday, I think TOTM caused me to overreact rather. Anyway, it is what it is. I spoke to SENCO today and she said he is making progress.

Ahna fantastic news on the sleeping. Really hope it continues for you.

That's good to hear Open - Hooe today was a good one too.

We had an initial meeting with the neurodevelopmental team. Fortunately they are assessing him for autism, ADHD and cognitive ability. So I didn't need to have a tantrum about that. In fact one of the clinicians said to me at the end of the meeting (45mins) that wfen without any further assessments she thinks ADHD will be diagnosed. Now I need to wait for SALT cognition and autism appointments. Going to be tricky juggling work nativity performances, OT and this. At last we're on our way though!

Hooray @dimples76 and @openupmyeagereyes

Glad things are progressing dimples. What did ds have to say about the appointment?

Open DS was mostly excited that there was a projector screen in the meeting room and that he was not at school and getting adult attention. That said he has been v difficult today- lots of aggression towards DD and I. I had signed up for a CAMHS course the week after next about child to parent violence but it's been cancelled. Can't wait for DS to go to bed.

Tell me he hasn’t asked for a projector screen for Christmas!

He asks for one several times a day Open. He has told me that I can buy one that recesses into the ceiling for $100! Still struggling to think of presents for DS

What are you getting your DC?

Hi all! How's everyone's week so far?
We are fine if not slightly soggy from all the rain! I was actually offered that job but not with enough flexibility of hours, so I think I made the right choice in turning it down. Hard decision though but it made me realise that I don't actually want to go back to that stage I my career, if that makes sense, and much prefer what I do now in general although people who I used to work with would consider it v provincial and less prestige etc. I actually think it's much more meaningful.
I am getting DS lots of board games and card games that he's asked for, magic.mixies stuff, some nice non fiction books, and for his main I've got a harry potter trunk filled with all harry potter stuff!

Elizabeth they sound lovely presents. Congrats on getting the job but knowing what you want.

dimples good luck with that!

Ds has written his letter to Santa. We’ve ordered a fair bit of what we’re getting him and given others to family to get him. I need to go actual shopping to get some bits for his stocking, so difficult when you can’t put chocolate and sweets in it!

Feeling really low today. I had a call this morning from the Early Help worker. He told me that he asked DS when he had felt hurt DS had said 'when Mum dug her nails in'. I explained that, that would have occurred when I grabbed DS to stop him stepping out on the road or if he was going for DD. He will often shout and scream at me on those occasions as he does in fact feel hurt but doesn't get that the alternative is being run over/me allowing him to hurt DD. I know the worker had to follow up on that. I just feel that I am trying so hard (especially at staying calm when I feel anything but - not always successfully) but it's not enough.

It has spurred me on to see if I can get help from the GP for me but the e-consult page keeps crashing. I have a meeting with DS's teacher after school. Wish that I could just head home now.

So sorry dimples. When you say you know he had to follow it up, was he just seeking clarification from you or do you mean he’s following it up elsewhere? I hope he put you at ease a bit?

This sort of thing is probably easier to talk about for ds as it’s concrete. Probably not what the therapist meant by ‘hurt’.

I do often wonder what ds says to his play therapist about us. We’re not allowed to ask about it. He tried to get Alexa to call the police on me last week but thankfully she doesn’t do that. This was for not letting him do something- probably a video game!

Hi we are going through the ECHNA assessment stage ATM. The school have said DD needs a Sen school I agree. The one they have suggested specialises in autism and severe learning disabilities along with behaviours.

I do not feel my DD would be suited to this, I do believe she can learn if taught in a way she understands. She is pre verbal and has many sensory issues which is why she struggles in main stream ie. She struggles with transition, loud noises, is still in nappies, she gets sensory overload so she doesn't participate in school trips.

I feel abit lost where to go from here she can learn she knows her numbers and her phonics, shapes, alphabet colours. The Sen school doesn't do GCSEs so I feel like putting her in a school like this will set her back. Surely autism doesn't automatically mean severe learning difficulties? She also doesn't have negative behaviours, she doesn't kick or lash out if anything she is vulnerable of other children doing it to her.

I'm not really sure where I'm going with this tbh but I wondered if anyone was in a similar situation... Would an independent school be more suited?

Agree @dimples76 with @openupmyeagereyes that it is easier to talk about that type of pain - also so much of it is how they set up questions etc. I hope it was more an update call than accusatory ? Not surprised either way it didn’t make you feel good

i really hope the GP is responsive and quick. I’ve also been feeling pretty low although a lot of it coming from DH and me having a pretty horrible patch but I do think of you (quite often!) going it alone and I’m in awe , you def need all the support you can get, practical and emotional. You haven’t mentioned your mum in a while is she still around helping a bit?

good fot you being decisive on job @ElizabethBennetsBoots but congrats in any case!!

week hasn’t started well for us, DD just having difficult days and evenings and can’t really tell why. The good run of sleep has gone bad again so maybe she’s just tired.

Thanks Open. I didn't get the impression that they were investigating it further. When I saw his class teacher after school I asked how DS had seemed and explained what he had said - they didn't seem to know about it. I agree the word 'hurt' would have only led DS to think about physical pain. I have only been with DS for about an hour this evening but in this time he has flooded the bathroom, spilled milk over the sofa and pooed in his pjs. An early night needed here.

Mummytodo how old is your DD? There is a right to a mainstream school if that is what you want.

Mummytodo has she had an educational psychologist assessment as part of the EHCNA?

Imo you need to look at all schools within a decent travelling distance and visit them. I think it’s the only way to get a feel for what’s right for her. You can look at special schools, ms with units and independent schools. Then be prepared to argue for why your favoured school is the right option.

Ahna have you and dh thought about couples counselling to help deal with the stress of the situation?

@dimples76 sounds rough.
Well, DS was splashing lots in the bath and wouldn't stop so I said to get out he said no and if I made him he would hit me. Did I want to get hit? If not, to leave him alone. So I've gone to wash up and pretend that I've gone out. DH is upstairs with him. I'm just so upset, I really thought we'd moved beyond all this but hey ho, we're back here again.

Ahna sorry to hear that things are harder again. Thanks for your kind words. Yes, my Mum is still my rock. I haven't got any relationship advice as I am perennially single but it must be hard to find time to work on your marriage with the pressures of ordinary family life and work without all the additional challenges that we all face.

Elizabeth it’s hard when they say things like this. You just have to remember that he doesn’t really mean it and not take it personally. Big hugs

That is how DS often behaves ElizabethBennett'sBoots - threatening to hit/kill/push me into the traffic if I don't give him exactly what he wants.

This evening DS has flooded the bathroom (whilst having a bath - so I quickly removed the plug when he refused to get out). Spilt milk on the sofa x2. Pooed in his pjs (so changed into 2nd pair of the evening) and made himself sick by shoving his fingers down his throat which meant another shower and another change of pj's (3rd pair). Roll on bedtime!

@openupmyeagereyes thank you. She has not seen an EP yet. I tried to sort my own but the la conceded so much quicker then I expected and now I can't see a private EP until may 2024.

We are going to see small talk tomorrow for a full salt assessment, they are also doing an autism screen and will be referring to psychologist as she has not yet been diagnosed. We are still on the waiting list.

I asked the LA to carry out an OT assessment but they have not got back to me

Can you visit schools without having an EHCP in place?

Mummytodo she should have an EP assessment as part of the EHC needs assessment. Has that been requested?

Re. SS you can probably visit but you most likely won’t be offered a place without an EHCP.

@dimples76 she is only 4, 5 in January. I can see her struggling with the amount of people but I think alot is because she doesn't have the right support... For example school have been teaching phonics since sept. DD doesn't understand how they are teaching and seem to be going abit too fast over the last 3 weeks I have sat with DD many times and now she understands phonic sounds and can do the alphabet in sign language. I just think she needs someone to understand her and show her and model things, she doesn't learn from being talked at