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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:
openupmyeagereyes · 21/08/2024 16:15

Ahna so sorry dd has broken her ankle Flowers

carriebradshawwithlessshoes · 21/08/2024 16:16

@Ahna65 i wonder how the aba schools got the kids to ‘get it’? Do you know? I appreciate there may be the toilet then reward type thing but for DS really, the juice isn’t worth the squeeze which is why I don’t think he’s aba material…

LydiaWickhamsBonnet · 21/08/2024 17:11

I'd be really careful of ABA, research it fully. It can cause long term anxiety disorders.

dimples76 · 21/08/2024 17:57

Ahna what rotten timing. It always seems the way, doesn't it.

Re toileting I think if there are a lot of difficulties with interoception then it is hard to see how they will ever toilet in the normal way. The continence service was always trying to persuade me to stick to a fixed timetable for going to the toilet with DS. It makes a lot of sense ...however, at least 50% of time DS would not go to the toilet when asked (whether I used visual aids, now & next or whatever). I think for my DS it's just been time and repetition. He had it down about 75% of the time by age 5 but it's taken another 6 years to get it almost 100%

OP posts:
Ahna65 · 23/08/2024 09:18

@LydiaWickhamsBonnet very much agree, I'm not at all pro ABA, I just feel inclined to take a look more out of interest given it's the only autism focused provision in the region, and also given that atm our options seem limited to the care place. But agree on ABA

We've had such a weird week with DD's leg in the cast. She's incredibly calm during the day. Doesn't seem frustrated by lack of movement but instead has WAY more attention for things like books, music.. it's honestly so striking. We are like howww can we get to this state without a leg in a cast? I wish the daycare had accepted having her with the cast because I think they'd be amazed! I've seen her passive before when she's been sick or something but obviously this is different because she's not ill. Flipside is nights have been grim. Possibly because just not phsyically tired, or maybe some pain / discomfort (itching?) but she's been up from 1-5 the last 3 nights, even when we put her to bed at 11 or so.

Yes @dimples76 I think on toilet a lot of DD's problem would be interoception. I think that continues to be a bit challenge for her.

LydiaWickhamsBonnet · 24/08/2024 07:47

@Ahna65 I'm sure you just want what's best for DD, I just get so concerned about aba approaches. DS struggled with toileting for a long time and a lot of that was around poor interoception (alongside demands etc) but it came with time.
On holiday at the moment in the Orkneys, somewhere I've always wanted to go. DS moaned yesterday about it being boring but then we found this amazing little beach so he was happy! To be fair, the main museum wasn't very kid friendly! Got a full day of outside things planned today! Hope everyone has good weekends!

openupmyeagereyes · 24/08/2024 19:12

Orkney’s sound wonderful Lydia.

Ahna how has dd been? The difference in her behaviour is interesting isn’t it?

All good here. Ds had a massive tantrum yesterday morning about something he wanted. He shouted a lot but it didn’t last that long and he didn’t hit or anything. He’s doing so well.

Ahna65 · 25/08/2024 02:05

agree, orkneys sound lovely

DD’s calm streak didn’t last and she’s been very frustrated and meltdown-y today. Has massively picked away at the cast too made a real mess of it

its 3am here and she’s still awake showing no sign of sleep - nights have been like this all week with the cast, feel like I’m going insane tbh… DH away this weekend so harder than usual, I just hope to god the sleep settles a bit when she changes cast

openupmyeagereyes · 25/08/2024 07:03

Oh Ahna, I hope you got some sleep. I think if I were in your position I’d be trialing melatonin bought from the internet or driving somewhere in Europe where you can buy otc if you can’t in NL.

Ahna65 · 25/08/2024 08:16

@openupmyeagereyes got about 1.5hours. She slept 0345 to 530 then had a long long meltdown and is now still awake.

we did try melatonin a while back albeit low dose but it did seem to make the night wakings worse so I was put off. But maybe it’s worth trying again. Although in general her sleep has improved a bit, it’s just the bad nights are so very bad !!

openupmyeagereyes · 25/08/2024 09:03

That’s rough Ahna Flowers

Iirc she was prescribed 1mg? I suspect that just wasn’t enough to be effective. Melatonin doesn’t work for all but the right dose and perhaps prolonged release is the way to really establish if it’s useful or not. Next time you see a doctor regarding the break you need to tell them exactly how it’s been, maybe they can help.

Ahna65 · 25/08/2024 10:44

Yes agree @openupmyeagereyes and think it was actually 2 years ago now we tried and there’s quite a difference in medicating a 3 vs 5 year old I think. I’m also intrigued about any other medication we could explore - anything that can help her reach the regulated , calm state she was in this week briefly!! Weighted blankets and such don’t have a huge effect for her, so I’m really not sure what it was about the cast / injury. Maybe her body just busy repairing. We are getting an iPad sent to us soon with the speaking Type program and we both said it was such a shame it hadn’t arrived for this week, might have got a snippet of her attention!

all the paralympics buzz made me come across a book about Dutch swimmer Marc Evers. He was NV as a child , he grew up really near us. The book is a lot about the parents pushing back on advice and it’s very inspiring especially as a parent of a fellow water baby :-)

carriebradshawwithlessshoes · 25/08/2024 17:38

Ahna, when DD received her asd diagnosis was she assessed for adhd? If not, why? I think this is the route you need to go down if you are looking at calming/ focus meds. How would do get that done now? Privately or is there a similar CAMHS system? I had a very long discussion with DSs paediatrician at our last appointment about that exact question. She got quite annoyed and said the lack of focus/ inattention/ movement etc is part of his condition… then said incredulously, do you really think you can medicate that? Those comments followed her saying that the only route would be adhd meds which wd have tried and didn’t work. She was very clear there was nothing else (beyond adhd meds) and implied I was a lunatic for thinking there might be 🙄. But adhd meds MAY work for DD.

@LydiaWickhamsBonnet what was DSs experience of toileting? When did he ‘get’ it? How? What were the challenges (for him?). Any advice? I hope you enjoy your hols, sounds fabulous!!

I am not sure about ABA. I would definitely look at it provided and here is the key proviso it was teaching him the right things. No disrespect to Lydia but being blunt I think it’s easy to warn against it when you have a child who communicates and speaks and is toilet trained and so on. I’m not saying I do (but many will) when you have a child in double digits age who is still unable to communicate that they are in pain or hungry or sick and you are up to your elbows multiple times a day in shit (which is not let’s be honest like changing the nappy of a 3 year old) would you consider a teaching method that may just be able to teach them these things when all other methods have failed? Hmmm let me think about that… 🤔. Not because it would make life easier for you as the parent although it infinitely would make your lives better as a family but because it would make your child’s life better if those skills were attained. If I was told that spinning DS anti clockwise on his head daily would lead to him being able to communicate I’d do it! A zillion times over. Of course there’s the ‘well let’s try other teaching methods first’ and yeah, let’s try them, bring it on, but when there comes a point after years and YEARS that they are clearly not working, what then?? Do nothing? Schools box of tricks only contains so much (as the OT told me this summer…..)

Of course that is different to teaching an asd child to lose stims or appear NT and so on which is clearly wrong. But it’s not the ABA that’s wrong, it’s the attempted outcomes. My view anyway. So I’d look at it Ahna. You can then rule it in or out can’t you.

Ahna65 · 25/08/2024 18:31

Good point @carriebradshawwithlessshoes , no, she wasn’t assessed for ADHD. But I think there’s a lot of overlap isn’t there and indeed can see there would be value in assessment. I’m not sure what CAMHS is as such, our doctor network is pretty fragmented tbh. I think the slightly out there consultant we were seeing would be the best to discuss medication with as I get the sense he’s more pro bespoke medication than some doctors here. We have a appt end of September with him.

Yeah, I know what you mean on Aba Carrie.
although at the same time the negative impacts worry me. However I do think it’s sometimes a slightly blurred line where aba meets eg floor play / Hanen style stuff or other methods where behaviour is reinforced in some way. I’ve heard some psychologists say the same on podcasts etc but then of course have heard huge criticism too. I’d imagine it depends to a degree on the place / people rather than broad brush bad? Hard to know.

had a chat with someone who used to work at that care place we were looking at , and who we are exploring using for some weekend help. She felt it would be not the place for DD, she seemed surprised that was the advice we had. The search goes on.. have emailed a couple more places.

carriebradshawwithlessshoes · 25/08/2024 18:43

Crikey Ahna it’s complex re placements… so why did this lady think it wasn’t the place for DD?!

openupmyeagereyes · 25/08/2024 18:52

carrie i totally get what you’re saying. I have seen black, American mothers on Instagram say that they have no choice but to use ABA to try and prevent their autistic young adult (and beyond) children being shot by police; it’s a very real threat for young black men acting atypically and not understanding social
conventions. I know the circumstances are different but absolutely you need to walk a mile in someone’s shoes.

Ahna65 · 25/08/2024 20:00

@carriebradshawwithlessshoes basically, just that she thought she had more potential, that most the kids there are more severely disabled than DD , in her words. She did think it would suit for overnight respite tho

gosh @openupmyeagereyes never even thought in those terms but yeah indeed, a mile in shoes etc

LydiaWickhamsBonnet · 25/08/2024 20:03

I would just respectfully say that my DS was very late to talk, he was a hyper dysregulated ball of energy for many years, and he still gets like it now when he's excited or anxious. He's currently saying the same sentence over and over again. So I do know how it feels.
The problem with aba is that it addresses the person's behaviour and not their needs. All it teaches children is that their needs don't matter and that their way of interacting with the world is wrong. This person explains it better than me here: https://neuroclastic.com/invisible-abuse-aba-and-the-things-only-autistic-people-can-see/
Floor therapy and TEAACH approaches are.much more positive and useful to look into.

young child lining up playdough in the colors of the rainbow from red to violet.

Invisible Abuse: ABA and the things only autistic people can see

One of the most hotly-contended points of division between the adult autistic community and the neurotypical parents of autistic children: explained.

https://neuroclastic.com/invisible-abuse-aba-and-the-things-only-autistic-people-can-see

openupmyeagereyes · 25/08/2024 20:36

Lydia I don’t disagree, I just don’t think it’s always black and white - hence my example. For me, the most problematic issues are intent and intensity.

I do also think that as parents of autistic children we are often held to a much higher standard. Parents of NT children do not always have to put their child’s needs front and centre. NT children have expectations that we are often encouraged not to place on our ND kids. It’s an interesting dichotomy.

openupmyeagereyes · 29/08/2024 18:48

How’s everyone doing?

Ahna I keep hoping things are getting easier for you.

Ds is not keen on starting back at school. I think it’s going to be tricky and am really not looking forward to it.

This summer has been really good tbh. Ds has been generally very calm and we’ve had some lovely days out and meet ups with various friends. Very satisfying.

dimples76 · 29/08/2024 21:29

That's great .Open*.

This summer has mostly felt like an endurance test with some lovely moments/outings. However, I still feel sad that it's coming to an end.

DS starts his new school on Thursday. Still waiting for taxi company to confirm timings etc. Bit stressed as to the logistics with DD's school run and also DS who is not talking much about it. Also waiting for Mum's biopsy results and my PhD viva is only a month away now. Just to add to the chaos we're getting a new roof and scaffolding is going up on Monday....

Having my daily calls with CAMHS. I can't say it is a pleasant experience recapping the key behavioural challenges every day, especially recounting the details of the death threats. DS started hitting DD during the call today so at least they're getting a true picture. They're coming out for a home visit tomorrow.

OP posts:
openupmyeagereyes · 30/08/2024 07:47

dimples daily calls with CAMHS are a bit much. What’s the goal of them?

dimples76 · 30/08/2024 08:41

Open the idea is that we do this for 2 weeks and then they identify triggers and help me develop strategies ...Not sure quite how that works, for example a lot of DS's violent outbursts occur if his wishes are not granted immediately, eg yesterday we were at a NT place with my Mum when DS decided that it was time to go to the cafe. We were on our way to visit part of the property on the opposite side which DD (and Granny!) were excited about. I told DS that first we would go to the Secret Garden and then the cafe. DS's response was to scream threaten to punch me on.the face and push me into traffic and then hit and kicked me.
Perhaps they might say that the whole outing put too many demands on him but if we stay at home he is constantly attacking DD or damaging the house ..

OP posts:
katiewil · 30/08/2024 22:53

DD 4 was diagnosed today with autism and referred further for a possible diagnosis of adhd.. even though I knew the diagnosis has hit me hard because I thought they would tell me what to do and where to go for more help but no.
DD has repetitive behaviours, is driven by a motor(doesn't stop from morning till night) and has social communication difficulties- she can speak and say what she wants (juice, dinner, biscuit etc) but has no actual conversations and she also just repeats songs, rhymes and cartoon programmes all day..
The ND team basically said speech and language will be no use to her but didn't offer any further guidance on how I can support her?
Anyone got any advice on what I can do to support with bringing her language on?
Thanks

oliviaxxx · 31/08/2024 06:39

Hey! Jumping on 👋
I've a 3 year old with autism. She's also a gestalt language processor 🥰
Hoping yous are all well!

Did people get offered genetic testing at their diagnosis app? And do they check iron levels etc? She didn't give much info as Millie was in meltdown mode so we rushed at the end 🙁

Thank you!