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

I don’t think school have any academic expectations for the group DS is in. They have said it is a high sensory needs/ low cognition group. DS is the exception as they have said he has some (selective) amazing cognition but as said prior can just jump and screech and run around all day so rightly he is in this group. It’s just depressing tho as his school reports read wholly similar to his nursery reports at 18 months of age….

he’s been awful today, constant vocal stimming every few seconds laughing hysterically and falling around. And yet this is home, where he should be most settled. I hate seeing him like this esp when there is no obvious reason for it. He was so great over Xmas too. I often think it’s the impact of school… one week in.

i need to press for the EP update

carrie do they do extra work with him in the area s they he is more able?

Did you meet with the EP?

Thanks Open, the outing went very well. DS was uncharacteristically compliant. Now he's in the bath and looking forward to all being in pjs early, lighting the fire and putting a film on. Is there any chance of getting my DC to watch a new film or will it be Tangled again?

Not met with the EP yet I need to sort that.

school say he has to be in a state to learn and often he isn’t so they do just try and get past that engagement barrier and often fail. When he is engaged then they say they try their best but it’s still basic stuff.

Without knowing all the detail, or being a fly on the wall, that sounds reasonable given where he currently is? I know it’s not what you want or expected.

I hope the EP has some useful insights.

dimples enjoy Tangled

I received a call from CAMHS yesterday. It's been a month since DS got the Autism diagnosis and when they advised that they needed to have further discussions/assessments re ADHD and learning disabilities. So when the caller said who it was, I thought hurray, hopefully some more answers. Unfortunately though they were just calling to say that they (Neurodisability CAMHS team) are chasing LD CAMHS team and that DS hasn't been forgotten about

I also received the draft EHCP following the transitional review in October although weirdly it names his current primary school as the placement..I am chasing his case worker to find out what schools have been consulted and outcomes..

In more positive news I had a meeting with Early Help and a therapeutic social worker from the post adoption team, called Full Circle. Full Circle are going to take over the psycho-education/emotional regulation work with DS. I am thrilled as it is with the same person DS and I worked with about 4-5 years ago and I really respect her. I am hoping that this will be much better for DS and supportive for me.

It's the third day off work and school for DD and I with a horrible cough and headache bug. I think we might be getting better. I am taking DS to his first OT appointment at the clinic today.

Just reading Dimples and thinking back to our earlier convo re paperwork and if we are all doing the right things. You mention a lot. If/ when DS is in a SS do you think that this will negate a lot of this, do you think a lot more is offered to adopted children and there is therefore the expectation to follow up on it?

so for eg, I am not really sure what ‘psycho regulation’ work is, but I assume DSs school work on all of this, it wouldn’t occur to me to look outside school for any support re this, I’m not sure if that is just because I’m not aware of what there is? Or perhaps because I don’t understand the issue 🤣. School pull in Ed psychs as we have talked about so those ‘services’ are under the school umbrella. What do you hope CAMHS will offer? over and above what you have at present? Is it the diagnosis (adhd/LDs) that you think is important or do you want him to be able to access adhd meds??

it’s interesting to know whether those who have DC in SS really do see it as a ‘one stop shop’ or whether they too look beyond/ outside for ‘other’ things and if so what, where, why?

I think my only outside school pursuance’s are where I think there’s something specifically not working in school ie their SALT provision isn’t generating results. Not sure if others are the same or not?!

Full circle sounds good @dimples76 l know you’ve had a gap for a bit of time now where the adoption therapist went awol - will that sort of fill that? Sorry about all the chasing and the sickness too.

Yes @carriebradshawwithlessshoes know what you mean re what SS set up offers. Of course different country here but indeed DD has a lot of her support via school - at least OT type stuff for example. SALT in theory too but it’s quite patchy so we also do it on the side (not much help so far). In the past we dipped into ABA. Did a hanen parents course. We’ve had random one off appointments with sleep therapists / people to teach massage techniques.. there tends to be names mentioned that lead to more appointments.. I guess that sort of thing adds up. When we went through DD’s records / diagnosis paperwork at a recent appt w that doctor it did read like we had been through a lot of random things / providers, but I think that was more the early days of finding our way around.

hows DS this week @carriebradshawwithlessshoes ? I relate to how you described last week - DD is in a phase of so much stimming - verbal and otherwise - and just generally very much in her bubble , feels quite intense , have had 2 cabinets and a curtain broken so far this week. I try to see the stimming as all ok when it’s not doing any harm to anyone but equally if she’s spinning something for like 3 hours (this is not even an exaggeration) I do wonder if it’s ‘good’ for her / if we should be discouraging? I know that might sound controversial, but I honestly don’t know what’s best . In general we very much let her do her thing when it comes to stimming.

I think you go for outside therapies if the typical SS offering doesn’t seem to be enough and they can’t access 1:1, or more intensive support there that you think they need. Of course you need to be able to afford it if you can’t get it in the EHCP.

If you can access stuff via adoption funds then you absolutely should.

Ds will stop 1:1 OT at the end of this month as they do it in blocks. I’m tempted to try and get someone private in (if school would allow) because I think blocks benefit the staff but not the kids. Ds enjoys these sessions and he gets upset when they end. He needs consistency and I do believe he benefits from OT.

Has anyone applied for short breaks or direct payments and the like? I hear others talking about it but we never have.

He has made some progress at school this week, with a bit of bribery. Small steps and too soon to be anything permanent but nice to have a positive week.

@Ahna65 hes not been as bad but hasn’t been very well. DH started with a bit of a sniffle today and has just tested positive for covid so for all I know DS may have had it too, I do find things pass around us in the house. I don’t routinely run around with covid tests if anyone is under the weather, do you all?

The stimming thing is an interesting (and obv controversial) one. I remember reading a post on here years ago about a poster who would stop her DS who was v young jumping (excessively) and flapping (excessively) esp in public. She wrote that currently he was very young, small, looked cute, the outside world was (largely) tolerant and kind. She wrote that she did not, however, believe that society would be as kind and tolerant to her 30 year old 16 stone 6ft son behaving the same and so she wanted to curb that behaviour now, for his own sake. She said she knew society wouldn’t change (unfortunately) and she couldn’t bear the thought of him being teased and laughed at at a time when she may not be around to protect him and fight his corner. Some posts stick with you and that was one. So whilst I do let DS do things to a degree I do intervene. That all said I would emphasise that for DS stimming is often a boredom thing so I can ‘distract’ him out of it quite easily without upset (such as giving him a food he likes or going out.) He doesn’t get upset or fazed by me moving him on.

Ahna this is the section on spinning from the book understanding your child’s sensory signals. I read in balanced and barefoot that some spinning is organising for the brain - levels that a typical
kid does but obviously this goes beyond that.

This book is from 2011 so I don’t know how out of date the info is.

Carrie, there are definitely additional resources available to adopted children- even if you have to fight hard to access them.

I guess for me the main thing is that DS is 10.5. So he is the age of criminal responsibility in the eyes of the law. His violence towards DD and me and cruelty to animals all give me sleepless nights. I am really worried about the impact of DS's behaviour on DD and DS's future. So I guess I am just scrabbling around for anything that might help! I am hoping when DS is at SS there might be less work for me....

Whilst DS had his first in clinic OT appointment I read the draft EHCP properly. I think that the LA have made a mistake as they have included weekly sessions with an OT. The most recent incidents in my fight with LA re OT are
September - EHCP issued with no OT included (havjnv been awarded it at Tribunal the previous year)
I appealed and made formal complaint.
October Response to formal complaint - we will reinstate OT
December LA - reply to appeal - no OT needed
January LA issue draft EHCP following October transitional review including OT.

DS seemed to really enjoy the OT session today - I could hear him giggling away. Next week I will watch the session on a screen. However, he spent the journey home shouting at me and outlining the ways in which he is planning to kill me. Fun times!

Thanks for the clipping @openupmyeagereyes interesting. Mostly DD is more object spinning (fidget spinner type stuff) which I guess isn’t as big an impact on the body, it’s more that I question if it’s good to let her do that and nothing else for so long. But it’s hard to stop it , other things don’t get her attention atm and interaction is pretty limited. It makes me sad to watch her just spinning things but then she is relaxed and happy when doing it so maybe I shouldn’t feel that way.

great ds enjoyed OT @dimples76 . @danni0509 how are things? Feels like haven’t seen an update in a while but I am bad at catching up sometimes

Ahna sorry, my misunderstanding. It must give her pleasant feedback, be it physical or visual. I understand the friction between letting them do it and wanting them to do other things. Ds is the same with screens.

dimples great news re the weekly OT. Does ds tell you why he says these things?

@Ahna65 can you turn the spinning into intensive interaction? If you ‘join’ her will it engage her with you? I used to be v sceptical about this but have to reluctantly admit with DS when younger and now to some extent it does work.

Hi all. I wouldn't try to stop the stimming, it's a self regulation strategy. All the feedback from the neurodiverse community shows that stopping it causes huge internal pressure and upset at being made to feel not normal. What is normal anyway? I get that people staring can be uncomfortable but it's an opportunity to educate people jn my opinion. My DS spins a lot less now he's older and we have more regulation strategies but he used to spin and spin. I tried to stop him a few times but he would then descend into a hyper manic meltdown so he obviously knew what he needed to do to regulate himself. I notice now that he stims more after school as I think he's more stressed and his main thing st the moment is repeating sounds in different ways. But that's fine. It works. When he's very excited or happy he will still hand wave. I think it's adorable. I'm certainly not going to tell him not to be himself so that he looks more neurotypical. It's quite obvious he's not once you spend much time talking to him anyway! E.g. intricate rules of chess, Roman army facts. I don't honestly agree with the idea that the world will never change so we need to make our kids look more NT. The world will never change unless we change it. And there is a thriving ND community doing just that.
We're fine. I told DS off for throwing stuff inside (he's obsessed with trick shots) but ironically it was me who broke a plate yesterday by accident! Going to the forest later on as its sunny here. Just finally found a place to stay for our trip in April so looking forward to that!

Sorry that came across a bit polemical which I didn't want it to! And a big yes to the intense interaction. I did that all the time with dS when he was younger, not realising it was a technique to be honest, and it really helped to build our relationship and give me insights into his world which at that point was very private to him.

@ElizabethBennetsBoots yes i do agree it’s very much regulating and I’m not worried about other peoples reaction just if it’s good for her. Def will try more and more w the interaction but the fidget spinner doesn’t offer itself to much - I try a spinning top but she’s less interested. Will keep trying !

Agree with the intensive intervention. Try to find different things that spin.

Elizabeth I totally agree.

Can you have a fidget spinner too Ahna? Sit next to her. Spin it. What does she do, does she look up? Can you pair it with something funny, I’m thinking about me and DS, he’s never been a spinner but I’d spin exactly what she is in these circs then maybe make a funny noise… ‘DD’s spinner….whhhhhhhhooooosh! Mummy’s…. ‘Whhhhhheeeeee!’ That sort of thing?? DS has been known at this point to bugger off which is fair dos but v often in that circ at that age he would stop and glance at me and smile or laugh. I’d then, if she will, do a swap. Mummy’s turn with DDs! DD’s turn with mummy’s! DDs goes whhhheeeee! Mummy’s goes whoooo, oh no, mummy’s is slower and so on.

I’ve not been on the wine (yet), honestly.

I just used to let DS lead it all. So if he was spinning something or playing with playdo, I would just copy him un parallel play which he thought was funny and liked. His demand avoidance means I still can't really set up or lead the activity but the early parallel play was a great way for us to interact

Thanks guys - yeah we have seemingly unlimited fidget spinners around the house so il def try copying along !