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

That is really helpful thank you.
DS actually asked if we could do the eye drops at home (instead of at the opticians) so I'll call them and ask. Would definitely be the least traumatic option for everyone, I think.

@NameChange30 yes that’s a point! I think sometimes the whole different environment can exacerbate problems! Last time DS had to lie on that bloody bed at the GPs he thought he was trying to tickle him and all hell broke loose! I’m drops at home too now 🤣🤣

I’m thinking

It's a tough one. I wouldn't hold DS because I'm teaching him about consent and bodily autonomy. How can I do that one minute and then hold him like that the next? In his mind, that wouldn't make sense. We just have to keep talking until he understands the why of something.

Yeah, DS wouldn’t understand those concepts, he has no idea. Unfortunately talking for him at that level isn’t something he understands. I think we all have to do what we think is right in the individual circumstances.

My DS is similar Carrie - he can't understand. When he had infected chicken pox that was the worst as he was v poorly and kept refusing to take the medicine.

DS is tiring me out at the moment- not terrible behaviour but relentless, eg messing with my Mum's blinds, then went to kick the dog, then screamed at his cousin, hit his sister and on and on. I tried to get him to do various things with me or just going on the TV but he wasn't having it.

It's almost 3 months since the CAMHS 'diagnosis' meeting when they advised that they were still deciding re ADHD and learning disabilities. Really hoping for something more soon.

dimples blimey, that 3 months went fast!

carrie have you had the EP home visit yet? Glad ds is more settled and calm.

We’re doing ok. Sleep is still up and down and school better in some respects.

Ahna I hope dd’s eeg goes well.

EP home visit was in the middle of DSs awful stomach bug so a disaster. Tbh I’m doubting she will add anything. It’s 3 months since she saw him in school and so far as I’m aware she’s fed back zero to school.

open is DS still on the 2mg melatonin? Do you think it helps at all?

dimples adhd is such a grey area. He may really benefit from an adhd medication some say it’s a game changer. Hope they move quicker for you both going forward.

That’s a shame carrie

He has 3mg (2+1). I think overall he’s been more settled for a while but we still have periods where he’s up early. Weekend was difficult but he was unwell.

@carriebradshawwithlessshoes totally agree. You asked what I thought and I told you based on my experience, which I said, but yes of course all our situations will be different.
@dimples76 things can feel relentless at times can't they?! Hugs.
@openupmyeagereyes hope DS feels better now.

NameChange30 I didn’t reply to your query about resources to help family members understand autism better. The thing that springs to mind for me is the Chris Packham series from last year if they haven’t seen it. IMO it’s very watchable and has a range of presentations.

Thanks Elizabeth, was just a short-lived bug.

Oh, and I saw on IG that Chris Packham is planning a follow up on ADHD and dyslexia so that should be good too.

Sorry NameChange30, I think the other good thing about that series is that because it’s about adults it shows that this is not something children grow out of. That autistic children become autistic adults. It’s obvious isn’t it but as the focus is so much on kids, the adults often get completely overlooked.

DD1 found that documentary so helpful for understanding herself, which was quite lovely.

dimples
Sorry you've had to wait so long, 3 months is ages to wait for the outcome of an assessment! Have you chased them?

openupmyeagereyes
Thank you for the recommendation - funnily enough the Chris Packham documentary was shown on BBC2 on Mon & Tue evening so I mentioned it to the family, don't know if anyone watched it. DH and I watched the first episode on Monday and found it a bit of a hard watch tbh, found it quite negative although of course it is important to acknowledge the difficulties that people experience. We didn't want to watch the second episode last night but will watch it. It will be interesting to see what the people featured in the second episode are like. The two people in the first one were lovely but nothing like my DS! Of course that saying is so true, if you're met one autistic person you've met one autistic person!
Chris Packham is brilliant though isn't he? If he's doing another documentary on ADHD, too, that'll be great!

GrouchyKiwi
I'm glad your DD found it helpful. Definitely something for us to watch with DS when he's older.

I found the Chris Packham documentary helpful but found I identified a lot more with the Christine McGuiness one, don't know if that's still available somewhere. Not one for children or younger teens though.

Looks like it is
https://www.bbc.co.uk/programmes/m001k31t

There were two McGuinness documentaries with more of a focus on the masking/female presentation, so it depends on your child’s specific traits as to how useful it is regarding getting relatives on the same page. They’re all worth watching though as general education and easier than committing to a book.

Another good program is The reason I jump, the book is fantastic too.

Ooh, I only remember one, shall have to investigate. I actually prefer books as easier to dip in and out of than try and find an hour to watch something so will look up The Reason I Jump, but documentaries are good for DH.

I found the other one - looks like this was made first (and they split soon after)
https://www.bbc.co.uk/programmes/m00122vl

Happy Mothers Day everyone. Just a normal day here, not even seeing my Mum as she's away. I am taking her out for brunch on Friday though so that should be nice. We're going swimming this morning which tends to be great 90% of the time and disastrous 10%.

I loved the Chris Packham documentaries. I found them very moving. None of the adults featured were like DS I guess due to his (undiagnosed learning disability) but it did give me insights re life for DNs.

CAMHS keep calling me with 'updates' but the update is that they are still waiting on the Learning Disability team. I think that I will call them this week as DS has been aggressive so frequently over the last week.

Happy Mother's Day, everyone.

Today is actually DS's birthday, too. He was very sweet and wanted to give me my card and present first.

I always get emotional on birthdays for some reason! My baby is growing so fast! (And when I was a kid I would always roll my eyes at my mum getting sentimental )

Happy mother's day all you lovely ladies!
DS very sweetly gave me the card he made at school, so lovely, and great handwriting which I know he finds hard so it's lovely that he put so much effort into it. We're seeing my mum and dad later and giving gifts, but a very low key day, just how we like it! Only 2.5 ish weeks to Easter holidays now, can't wait!!