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

@dimples76 im not really even cheesed off at the speed of progress, it’s just that there doesn’t seem to be any … now in 14 months! Which really isn’t on is if, to still have this same old stuff month in, month out, parents eve after bloody parents eve. It’s soul destroying!

I agree that there’s no point in making any decisions until you get the EP’s findings.

The lack of attention is one thing, the rest seems to be extreme sensory seeking behaviour. Is he getting regular OT and have they established a sensory ‘diet’ for him? Is it being adhered to?

What strategies have they tried to get him to engage in a more meaningful way? Have you exhausted the ADHD meds available? This is the bit they are presumably meant to help with.

Their feedback isn’t really helpful is it, I can understand why you’re cheesed off. There must be something positive for them to comment on.

Does he engage positively with the other children in his class?

The ‘windows’ of showing a pretty high level of skill where they all go omg are there, but then the window closes and he’s gone again. Sometimes for days before they see it again.

With this, those windows are there when they weren’t previously (at school)? That does sound like some progress.

Have they kept a diary to try and work out what’s different about those days or times?

dimples hopefully they can put the projector away for his sessions!

Yes he has an OT led sensory diet which they say they do daily. I can only take their word for that. No he doesn’t engage with the other kids, he never has done (with other children). Re engaging him they use the things I’ve said upthread as reasons why they can’t engage him (no attention etc) so that is circular in argument. They say OT is the holy grail for addressing these behaviours and it isn’t working.

they do say he is randomly very up and down. I do find that at home, I’ve commented before when I’ve asked you guys if you think ‘down’ behaviour is linked to something, I’m not sure re the diary.

re the windows, ms actually did say they could see them. I just think they are so fleeting (then and now) they don’t want to really give him much credit for it!

And absolutely , I thought the negetives/ stress would end with ms but it hasn’t !

Re adhd meds we had ruled out but I’m kind of coming back around to the idea.

And I know this is controversial, but have you ever tried an ABA type approach or looked into it? Feel free to PM me if you prefer.

@carriebradshawwithlessshoes it sounds like he's really dysregulated most of the time in the setting.Is there anything that chills him out or resets him at home that school could try? Transitions could be causing anxiety and it comes out as dysregulated behaviour. Have you looked at pda? Building in choices time could help him feel in control. I would honestly be wary of ABA because it could do more damage to family relationships and make him feel less attached to you than any help it brings. On the surface it might look like it helps, but often you can just be teaching autistic DC to mask which obv has long tern issues. I don't know though. See if th4 EP has any insights?

Thanks both. Happy to be open and say we did try aba many moons ago, I do think that kind of structured work and expectation is good for DS, I understand @ElizabethBennetsBoots hesitation but I’ve always thought of the problem with aba as being if they are trying to teach the wrong things, rather than the technique per se. @openupmyeagereyes equally feel free to pm me if you wanted to talk more off thread. It didn’t work for DS (this was years ago) as then (like now) there was no motivator. No toy/ iPad interest . Sweets was the best I could sum up but they ‘rewarded’ so much it was a joke. They would start at 9am and by 9.20 he would have been offered 2 packs of maltesers, for sitting down, for eye contact and so on he was stuffed 🤣. Aba would then be finished by 9.25!! I have suggested a vaguely similar approach to school (20 min maths then trampoline) but they are v anti aba and do the trampoline anyway. Didn’t like my suggestion of edibles as s motivator.

I would be interested to see how he fared in an aba setting actually but DH says we are done with it. Tried and failed.

im not sure @ElizabethBennetsBoots . At home I would offer things like physical stuff/ play which they offer too but don’t say it works. I just don’t know… but I suppose I expected them to is the essence of it!

Elizabeth I was wondering if breaking things down into tiny steps with a reinforcer has been tried. I don’t think it has to be enforced or, god forbid, intensive. Maybe small wins could snowball into bigger wins. I think it can be helpful to look at what the tiniest next step is to get to a goal.

I bribe ds sometimes, less so than we used to, thankfully. I’m not sure it’s that different. The difference is more the intent and the delivery I think. E.g. the intent to try and make dc appear NT and a regime of 50 hours a week is one thing. Teaching a new skill in teeny steps is another. The problem is often knowing what next steps to take can be hard and sometimes professional advice can be helpful.

Would you not think Open these are things a SS should be suggesting tho too?! At least to try!!

I’m not sure they look at things in that level of detail, I could be completely wrong though.

Is dh on board about trying meds again?

Hi can I join? I find this chat so interesting but never find the time to join in.

@carriebradshawwithlessshoes i have exactly the same concerns about reports and appointments, been through an Ep assessment for my DD8 a few years ago and my nightmare happened and they found her to be lowest of the low in a few cognitive tests, even sent me off to the paediatrician to check for possible medical reasons for her inattention, I think CP, but nope, nothing physical going on. EP didn’t do a full assessment as her verbal skills are not up to it. I know my DD to be intelligent in various ways but in test situations she crumbles, doesn’t understand what’s being said, just says/points at first thing to pop in her head or repeats the last thing said to her. I explained and the EP seemed interested in her complicated profile. The EP included the results for the ehcp thingy but with a note to say they should definitely not be used to predict any future outcomes and abilities so that made me feel better. It’s absolutely heart wrenching reading this stuff though. I would try to see it as positive. You may find out some really interesting stuff about DS

RE previous discussion of depression and whether the cause of it is clear and whether that matters. I remember listening to an interview with Jon Ronson and he talked about being diagnosed with “situational depression” which I think sertraline would be used for. I think it’s a temporary depression based on a specific situation that resolves once it’s over. The situation for us is being a parent cater/concern for our children so it’s a bit different but I think the drugs work the same 😎

anyway im here really as I’m just totally confused. My DD started in a SS in September and I imagined all therapy I’ve been fighting for in MS (ot and speech) would just magically happen on site and there would be multiple therapists working there to take the kids out 1-1 but it seems this isn’t the case. The teacher looked a bit surprised when I asked what’s happening re the ot and speech mentioned in her ehcp, seems it’s all just “we try to incorporate working on those things in class” so with the teacher, not a therapist. Wondering if others here have had the same?

Hi @Dorothyparker010
@openupmyeagereyes ah I see, yep I agree qbout the smallest Epson. I think the pda approach means I'm wary of any demand led approach and what's worked most for us is mirroring DS' play in order to build trust and go from there. Him being interested in what I'm doing came years after doing this intensive mirroring approach. I honestly think theory of mind has a lot to do with it, as in DS never used topoint things out go me or tell me things because he thought I'd just know, and he's only now slowly realising that's not the case. He's done some very nice art tonight (although still not asleep!!)

Steps, not Epsom!!

Omg @Dorothyparker010 re the EP assessment! @openupmyeagereyes @Ahna65 do you now understand why I’m nervous in fact I feel like just telling school a definite no reading this. How is this a good thing for us or him?

despite being potentially interesting re his spikes did anything life changing come from the report @Dorothyparker010 ? For all that agony? I assume not…

@Dorothyparker010 we have spoken previously although I admit I’ve forgotten your exact situation. Are you me tho and is this our school? 🙄🙄Everything you say including the ‘we incorporate into our day’ is word for word what school say!

interested on the back of comments of @ElizabethBennetsBoots for those of you with Dc who do engage whether they always have done. DS wouldn’t draw he would just chew the pen or throw it down and walk off. Interested to know how you have got there, I had thought this was one for SS but surprise surprise not.

@dimples76 the fact that your DS has managed to remain in mS and will entertain any homework or stand in a choir makes me laugh when the assessor says he’s the ‘worst she’s ever seen.’ She needs to get out more or is she newly qualified??? 🙄🙄

Yeah I get it Carrie. We’ve had reports where they tried to do IQ or similar tests and she predictable scores basically zero bc she can’t do the tests. Sometimes the report is worded to reflect that, sometimes less elegantly. But yeah I imagine that gets worse with age - for her she was 3 at the time so I was sort of like whatever. I am sensitive to reading most of her reports or feedback, even the intended positive can be a bit tough - massive fanfare if she’s stacked blocks.. it’s like yeah she’s been doing that for 3 years, of course she can stack blocks.

Interesting observations re ABA and I am also now quite anti it although we did explore it for a while. But they were focused on stopping behaviours that she needs for regulation so it was stupid. However, I do think people are often so scathing about ABA but much of the method / principle is replicated in other areas within SEN therapies (maybe that’s what you’re saying too open). Ultimately we want to reinforce positive behaviours I guess. And eg all the Hanen stuff definitely reminded me of some of the same principles. I don’t think it’s as black and white as some criticism would have us believe. But I do think the narrative about ‘intensive’ therapies always leaves you thinking you’re not doing enough.

carrie ds has always engaged with us but that doesn’t mean he always does whatever we want him to. We play, read, whatever but he can still be quite own-agenda focussed - that’s just part of his ASD. He’s never been interested in drawing, colouring, arts & crafts. He will draw or write occasionally and if it’s led by him and based on his own interests he may do a lot at a time but it’s very sporadic and very much at reception/yr 1 level. Lack of experience & FMS is all chicken & egg really with him.

dimples I agree with carrie, that seems an exaggeration for your ds’ capabilities. Still, over the coming weeks they’ll get a more rounded view.

carrie I can totally understand why you might be dreading it. Only you can decide if you want to put ds and yourself through it. Are you able to talk to the EP before deciding, or speak to your own, private EP about your concerns?

I guess I’m not sure where it leaves you given you and dh have said the current situation can’t go on and school are saying they are doing all they can. Ds is 8 now?

Dorothy

“we try to incorporate working on those things in class” so with the teacher, not a therapist.

I think this is standard for a SS, it’s what they all try and do which is why they do play like sand, water, playdough, Lego in the class. Kids think they’re playing but really it’s sensory & FMS stuff. That sort of thing. Usually the therapists work With the teachers on what to provide.

That said, if a child has weekly OT specified in the EHCP then at our school that is still provided because it’s a statutory requirement. They may try to negotiate it out at the AR, especially with the move from MS to SS where there’s a completely different approach.

You see from my perspective I don’t think this ‘learning in the classroom’ business works for DS. So to give an example, they say they sign in class all the time. The teacher speaks and signs. DS is not in a month of Sundays going to sign by watching all that.

how he would learn to sign I am certain is by them pairing a sign with a massively favourable thing (initially). Let’s say for arguments sake a sweet. A member of staff sits down with him and every day one way or another he signs sweet and then gets it. Quiet environment one to one. Over and over. I appreciate this may be aba like but it would work for him. Initially for perhaps a long time he would need hand over hand because he doesn’t copy. But if they did that intensively say 50 times a day each time paired with a tiny sweet and then I did the same 50 times after school, he would I would estimate within a week be signing sweet. They could then move to something else and repeat. So in the 8 weeks or whatever since term started he would have 8 signs he didn’t have before.

in contrast he could sit in a classroom watching someone generally sign til the cows come home and not pick it up.

I would expect school to have this in their bank of strategies… but no. That just really confuses me. Is this really rocket science.

interestingly open you pushed for the EP report! Was that because you had no fears/ more confidence in your DS than I do mine or are you just more resilient/ am I too sensitive?

I’ve sent a well worded if I say so myself email to the head setting out my issues with it. Will see how she responds.

See I would consider doing the same sign 100 x a day for a week to be quite intensive. If it would take that long is it the best way for him to learn? The EP assessment, ideally, would identify what approach is best suited for him to learn effectively. I think that’s the whole point of it, it shouldn’t be to put kids in boxes.

Our situation is different because ds is verbal. I appreciate that some dc find it hard to do the assessments, I fully expected ds to. Because the EP is based at school he already knew her and I think that helped. She did it over a couple of days with frequent breaks.

The reasons we pushed for it was because he wasn’t ft at school after 18 months, school is more academic than many ss’ and we wanted to be sure he was in the right place as he’s still fairly resistant to formal learning. Honestly I just want to know the full picture as long as it’s a fair reflection of him (which I appreciate may not always be possible) so that we can make decisions and plan accordingly. As it happens we’re still chasing the report so part of me is worried she talked through the wrong results with me. We’ll see.