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Thread 14 - Autism and any other SEN

503 replies

dimples76 · 15/08/2024 18:56

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

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

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

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

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

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

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

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

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

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

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

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

OP posts:
Greenpeanutsnail · 05/11/2025 14:21

openupmyeagereyes · 05/11/2025 13:37

Greenpeanutsnail what’s causing you the most worry and stress? How old is your child?

She’s 6. I’ve got an EHCP annual review rapidly approaching. The LA haven’t even finalised the AR from last year. SLT have refused to increase hours as they say she isn’t engaging. The school say her progress has plateaued. I’m worried they could say she shouldn’t be at the school anymore. She’s in a centre attached to mainstream. She just doesn’t seem to be progressing. I’m at my wits end over what to do. My LA is awful too.

openupmyeagereyes · 05/11/2025 14:43

Is she verbal? Does she seem to like the school and be happy there (notwithstanding your comments about lack of progress)?

Greenpeanutsnail · 05/11/2025 15:52

openupmyeagereyes · 05/11/2025 14:43

Is she verbal? Does she seem to like the school and be happy there (notwithstanding your comments about lack of progress)?

She seems to love it! She runs in and wants to stay after it’s time to leave. She isn’t verbal. Still in nappies. She’s started to cover her ears a lot, but the doctor says there’s nothing wrong and she refuses to wear ear defenders or kids Loops. I’ve read so much about ASD, but feel clueless when it comes to my own child.

openupmyeagereyes · 25/11/2025 12:12

How is everyone doing?

dimples are you looking forward to Stranger Things? I’m so excited.

We are doing fine, ds still doing better at school thank goodness. I still haven’t done the DLA renewal, I really must get on with it…

dimples76 · 26/11/2025 00:16

That's great news re school @openupmyeagereyes . Can't believe that I am on a rare night out on Thursday. Will have to wait until Friday evening to watch ST.

We are trundling along okay in the main. Big headaches with school transport but otherwise school is good. DS's reading age has increased from 6.8 to 8 years during his first year at special school. So I was delighted to hear that.

Our other other main (and rather terrifying) development is that DS has started puberty. V unexpected as Endocrinology did not think that it would happen naturally and we were formulating a plan for hormone therapy in a year or so. It feels like his physical/cognitive/emotional development is all out of kilter now. He is still very petite at 12.5 wearing 9 year old clothing.

OP posts:
LydiaBennetsBonnet · 26/11/2025 16:47

Hi all! Getting over a horrible bug but otherwise doing ok! Work is busy. Been ghosted for two different potential jobs but its making me realise I quite like where I am. Trying to prep some bits for Xmas and im on the pta now so lots going on. DS is getting along fine in the main, still finding demands hard but his new teacher is much more understanding generally and wants to learn more about PDA. DS wants to talk about it a bit too, which has been interesting. Hes now taller than me and looks like a teenager. I found some old videos the other day and was quite teary, just in the sense that I couldn't believe how little he was (and so sweet) and that has gone now and I wish I'd enjoyed that time more instead of endlessly worrying about everything! I think not having other children is also making me realise, every stage is the only time I'll experience that, and I miss all those versions of him while enjoying so much the person he is now. I can't believe how quickly the years go by. We are all looking forward to getting the advent calendars out next week (I have a coffee one!) and feeling a bit more festive! Ooh and I finished my novel but no one wants to publish it bah!

openupmyeagereyes · 26/11/2025 16:47

I will have to stay off Instagram until I’ve watched the first drop of episodes so I don’t see any spoilers.

Ds has hit puberty too. He’s tall and his voice has deepened.

Great re. your Ds’ reading age, and with the puberty, it goes to show the doctors don’t know everything about our kids.

openupmyeagereyes · 26/11/2025 16:49

Lydia I totally understand with ds being an only too. I wish I could stop time.

Congrats on your novel. Can you self publish?

LydiaBennetsBonnet · 26/11/2025 16:49

Glad things are going well @openupmyeagereyes and well done on the reading age to your DS @dimples76

LydiaBennetsBonnet · 26/11/2025 16:51

@openupmyeagereyes yes I think i will self pub again, but omg the marketing is relentless and I find it so hard! This one is based on two adult sisters in the present day, one of whom is a single mum to an asd child, and two women in the 600s. Based on a real life local mystery!

openupmyeagereyes · 26/11/2025 21:11

Ds has finally written his Christmas list. As usual it’s full of old stuff that hasn’t been sold for years 😫

LydiaBennetsBonnet · 27/11/2025 18:04

We have about eight different versions of monopoly on DS' list 🤣

BellaGoth · 10/12/2025 10:45

Hi everyone, sorry for radio silence. We've all had flu (except for DD) and it's taken absolutely ages to shake off!

@Greenpeanutsnail so tricky when they won't wear the ear defenders! Would she wear a softer headband or anything like that to take the edge off a bit?

Really struggling with DS at the moment. I never expected puberty / teen years to be easy but this is something else. This morning was another massive argument about going to the Cinema (he wants to go but fails to remember that he hates leaving the house, putting on clothes etc and will fight all evening about it and I just don't have the energy. So we're not going and now I'm a horrible person 😒)

How do all of your DC cope with Christmas / lack of routine? Absolutely hating it over here!

Greenpeanutsnail · 10/12/2025 10:59

@BellaGoth Unfortunately she won’t! She just sticks her hands over her ears. Thanks for the suggestion though.

dimples76 · 22/12/2025 07:16

Hi, how is everyone? Haven't posted in a while as it feels like this thread is so quiet now. But I am still thinking of you and your DC.

This time last year we had hit a real low (when my neighbour thought that DS had stabbed me with a screwdriver). A year later things are so much better: DS is generally a lot less physically aggressive towards me and has really settled into school, DD is making me play hard, I have successfully completed my doctorate and lost 5 stones. However, I am feeling rather frustrated with myself as I am struggling a bit to enjoy the moment as it also feels like the wheels could come off at any time. DS's behaviour to DD is still unacceptable and his language to me is still very abusive. I don't appreciate being called 'a stupid, fat bitch' several times a day.

Hope that you all have lovely Christmases
On the present front I foolishly decided to create a water play thing for DS - what was I thinking? It is about 60% there ...

OP posts:
openupmyeagereyes · 22/12/2025 09:59

Merry Christmas dimples! Wow, what a fantastic year you’ve had - a doctorate and losing 5 stones. Congratulations, you should be extremely proud of yourself. I’m so glad things are better than they were, even if there’s a way still to go.

I had to have a chat with ds about Santa as he still believed but was being completely ridiculous about new things he wanted him to bring. It seemed crazy to be arguing with an almost 12yo about what Santa could and couldn’t do so I just had to be honest in the end. He’s a bit sad but less upset than when I was telling him Santa couldn’t manage a completely new list 4 days before Christmas.

openupmyeagereyes · 22/12/2025 12:39

carrie i hope you’re ok. It must be hard this year without your dad ❤️

dimples76 · 22/12/2025 16:32

@Open I have spoken to DS re the tooth fairy but have not told him about Santa yet. I think that he still really believes. He has not made any demands this year or asked any questions about how Santa does it - I was hoping that I could drip feed through my answers.

@Carrie hope that you are okay. Christmas always stirs up my grief and I have had a lot longer to process my loss.

@Ahna65 you have had a challenging year too. How are things now?

OP posts:
carriebradshawwithlessshoes · 22/12/2025 17:11

Hello everyone, I’m reading. I seem to post less nowadays simply because I find mn harder to navigate, it seems to take a day and age to log in, you don’t seem to be able to stay logged in… no, I don’t want to link my social profiles and so on. That all said I’m a technological numpty so fully accept it may just be me.

@dimples76 that’s an amazing year for you. Let me start by asking about your weight loss, how have you done it, sensible eating or mountjaro?!!! I have said before because I don’t have stones to lose I tend not to try as hard as I should, then when my dad died I just totally lost my appetite so did lose quite a lot but not for the right reason. No doubt some point it will go back on though.

We are all fine, DS still doing v well on the guanfacine. CAMHS wanting to increase it in the NY which always makes me nervous but it has def slowed him down and made him more measured, is probably the right way of putting it. Because he’s thinking more and being less impulsive that has helped with so many things, toileting, language and so on. Dimples, I think you said DS isn’t on any meds is he, so presumably these improvements have stemmed from natural development alone? DSs school nurse used to say it was crazy how many impulsive, often aggressive children totally mellowed with age, so I wonder if with DS this is at play too? We went to Costa today and he actually asked for a (hot) chocolate which is something I thought I would never hear.

carriebradshawwithlessshoes · 22/12/2025 17:19

In terms of dad yes, it’s very hard. This sounds stupid but I read it elsewhere too, I’m dreading NY also as the start of a full new year that he won’t see. Any of it. I feel (totally unreasonably I know so no need to tell me) that in my 40s with still a primary aged child it was all still too soon… I had grandparents who saw my marry and have DD. However I know that’s mad as there are awful stories of people passing at our age and so yes, it’s just an odd time of year. Work as ever carries me through as it’s so busy, never more so with workload and of course social things, it doesn’t give me time to think which in many ways I feel is good but a therapist would say it wasn’t!!

What are you doing for Christmas? We are hosting so hopefully that will work!! I hope everyone has a lovely break, whatever you are up to.

carriebradshawwithlessshoes · 22/12/2025 17:21

In early NY we are seeing an APD specialist who specialises in kids who have had hearing difficulties and speech issues after prolonged periods of glue ear. So a diversion from the usual (in DSs case) useless SALT. Nothing may come of it but I will update either way,

dimples76 · 22/12/2025 17:38

@Carrie I am on mounjaro and also doing weight training, including a session with a personal trainer once a week. It feels like a virtuous circle, in that I have more energy which makes me more inclined to be active. But also because DS is a bit less challenging and I am no longer stressing about my thesis my comfort eating is dialled down. Unfortunately still have a long way to go to get to a healthy weight but thrilled with my progress so far.

DS isn't on any meds. I am hoping to give it a go again in 2026. The impulsivity is still pretty scary. My DN (who DS looks up to) started meds in November and they have helped him enormously.

OP posts:
openupmyeagereyes · 22/12/2025 20:53

dimples however you’ve done it, it’s amazing. I have about 10 pounds to lose and find it so hard. It needs so much consistency to get any off and seems to go back on so fast. I’m walking and strength training but that’s not enough.

carrie is ds talking more? And no, I don’t think you abu re. your dad. We never feel like we have enough time with people we love. It’s always too soon when we lose them Flowers

Ds has definitely improved so much, in many areas, with age. We still have a form of most of the same issues but they are a bit different now he’s older, probably also because our attitudes and reactions have changed too. We let a lot more go than if he was NT; it’s the only way IMO.

carriebradshawwithlessshoes · 23/12/2025 09:40

@openupmyeagereyes that’s so good to read re your last paragraph. And I agree, 5 stones is amazing dimples!

I think that dreaded 10 pounds is a killer to lose @openupmyeagereyes . We have talked before about this. I think I’ve only one friend who has stayed the same weight over the 31 years I have known her but she’s the one who when we go out always has the salad, leaves half of it, doesn’t drink much wine, won’t order pudding etc. Is that the answer? I wonder otherwise if it’s really achievable… really relate to Shirley Ballas who said after a certain age you just can’t eat more than once a day and not gain weight. I thought if she says that with her history and no doubt exercise regime there’s no chance for me 😂😂.

dS is very vocal about what he wants Open. But he finds the same sounds easier to say so it’s trying to move him on from that. What has been a revelation for him and us is his realisation that vocal requests are key to getting what he wants. He went years ‘chatting’ but not really linking the 2.

openupmyeagereyes · 23/12/2025 10:18

That’s fab news carrie.

I think perimenopause is a different beast when it comes to weight gain and loss. Eating one meal a day probably leads to a skinny-fat sort of body as you couldn’t maintain your muscle mass with that approach. I want to be strong but I’d like to lose at least 7 pounds of fat and it’s hard going as it requires complete consistency IME.