Primary School Auties 11: 2023 is here

[openupmyeagereyes]

Thread 11.

This is a thread for the parents & carers of children with additional needs. Most of us have autistic/ADHD children in primary school, but anybody is welcome to join us to chat x

Links to previous threads below.

Thread 1
www.mumsnet.com/Talk/special_needs/3080753-DS-with-ASD-starting-school-Sept-2018-I-am-feeling-overwhelmed
Thread 2
www.mumsnet.com/Talk/special_needs/3451020-Reception-auties-2018-19-thread-2
Thread 3
www.mumsnet.com/Talk/special_needs/3628263-Auties-transition-to-Year-1-thread-3
Thread 4
www.mumsnet.com/Talk/special_needs/3748449-Primary-school-Auties-into-2020-thread-4
Thread 5
www.mumsnet.com/Talk/special_needs/3953023-Primary-school-auties-summer-and-beyond-thread-5?pg=1
Thread 6
www.mumsnet.com/Talk/special_needs/4166833-Primary-school-auties-spring-2021-and-beyond-thread-6?pg=1
Thread 7
www.mumsnet.com/Talk/special_needs/4303826-Primary-school-auties-summer-and-the-new-academic-year-thread-7
Thread 8
www.mumsnet.com/Talk/special_needs/4422100-Primary-school-auties-step-into-Christmas-and-the-New-Year-thread-8
Thread 9
www.mumsnet.com/talk/special_needs/4502988-Primary-school-auties-thread-9-spring-summer-2022
Thread 10
www.mumsnet.com/talk/special_needs/4592899-primary-school-auties-10-summer-and-beyond-2022?page=1

CAHMS has a 2 year plus wait so a development paed referral (even if it’s just for sleep meds as a singular issue) would be worth it.

this is what I asked for last time but that’s not what I got. I will be more direct this time.

I appreciate all the advice, thank you.

Just waiting for ds parents consultation, his teachers phoning so just typing quick.

Carrie there are loads of sleep meds, CAMHS told me, atomoxetine is supposed to help with sleep too, so ds is on phenergan & melatonin and his adhd med is also supposed to help, yet he’s still an arsehole through the night 😆

I 100% get what you say the earlier he goes to bed the more chance of him waking up at midnight, ds is the same. We don’t flush the toilet upstairs on a night after he’s in bed either because if he wakes up then he’s awake for the rest of the night. I walk round so quietly after 9pm flinching if I hear him turn over in bed. Or if he coughs or something I lay there thinking ffs ds please please please don’t talk.

Also ds doesn’t like toys, he has loads, he’s not interested. He doesn’t really know how to imaginative play other than acting like a roblox figure but I don’t think he’s actually acting, I genuinely think that he thinks he is one 🤣🤣 He prefers the trampoline / playing in the garden (hard in winter) / scooter (which he nearly broke his arm on Sunday going over the handlebars, week old and we had to send it back as the handle bar snapped, it was a micro scooter aswell so not cheap!), or his iPad / PlayStation, but he couldn’t care less about toys. unless he’s stealing them from school 😅

The sleep feels so complicated sometimes doesn’t it - there’s just no easy solutions it feels like

we gathered 2 weeks of sleep data and shared with a sleep coach who is also a sensory OT (was in a way quite gratifying to see it on paper as people often suggest we misremember how bad it is when things are tough - out of 14 nights, she was up for 3 or 4 hours from 1am on 12 nights and bedtime made no difference)

so far I’m not won over by the coach, her first suggestion ‘DD might just be somebody who needs to start her day at 3am or 4am’.. 4am I could just about do but 3? Come on… also DD looks and seems exhausted, so I just don’t buy the idea that she doesn’t need the sleep

starting to notice the tiredness more and more myself, have had a series of minor accidents - burns / falls etc. Just sleepwalking my way through the weeks basically !

Ds wears his Fitbit for bed so it tracks his sleep, it’s so up and down, one night he’ll sleep 5 hours next night it’s 8, next night it’s 3 and so on, it’s all over the shop.

I’ve got it linked to my phone so I can check it, it tells me how many times he’s been in deep sleep, how many times he’s been restless, how many times he’s been awake etc etc. really useful.

Just a quickie to say good luck with the call Danni x

so far I’m not won over by the coach, her first suggestion ‘DD might just be somebody who needs to start her day at 3am or 4am’.. 4am I could just about do but 3? Come on… also DD looks and seems exhausted, so I just don’t buy the idea that she doesn’t need the sleep

Ahna I agree. My ds copes most of the time but he definitely needs more sleep than he gets too. I could make my peace with a 5am start frankly but earlier than that is hard going.

danni I hope school have some positive things to talk about. Your ds has a lot going for him.

How did it go with school Danni? Good luck with getting the right referral with sleep meds Open
Welcome Usernameqwerty. Carrie the thought of going camping fills me with horror - I am very low maintenance but I like a comfortable bed and a bath.

I had a review with DS's adoption therapist and supervisor. The senior therapist was v supportive. She said that it was appalling DS still did not have diagnoses and that he ought to have a Disabilities social worker. She is going to contact his post-adoption social worker to try and get things moving. Do any of your children have a Disabilities social worker? I don't think that any of yours have a learning disabilities diagnosis do they? I guess that's what I need to push in addition to the ASD/ADHD. Her view was that DS's more challenging behaviours stem from learning disabilities and ASD not trauma/attachment - when I was first requesting ASD assessment I kept getting fobbed off with 'it's probably developmental trauma'.

dimples that sounds like a productive meeting, how do you feel about it? Can they push for a diagnosis? Is he already on the pathway?

Ds has never been assessed for a learning disability. I sway between thinking he might and that he doesn’t. It was on my list to discuss with the EP, should that discussion ever happen.

Thanks regarding teacher.

She was nice and positive, said ds had met half of his ehcp targets so far and she expects he’ll meet the rest by the summer term ready for his annual review, barring 1 but that’s surrounding safety (ie stopping in a dangerous situation when told to do so) he never meets the safety ones! They simplify them year after year.. so yes all good, she just said he need’s permanently watching to ensure he’s ok and others but other than that he’s getting on ok. She said his reading is good and he helps her read stories to the class at circle time.

dimples ds has a learning disability diagnosis, CAMHS say a significant learning disability on all his paperwork, I would assume that means severe using the word significant, but he’s no way severe, he’s moderate. Ds doesn’t have a social worker, he should have and I’ve been told to get one more than once for help accessing respite etc, but since he’s been full time in school I don’t feel like ringing his neck as much as I did so haven’t got round to it yet 🤣 I will do for when he’s older, deffo need one going into adulthood.

Ds ehcp targets are basic mind you, turn take with 1 friend for 3 turns or more.

Attend to an activity for 2 mins or more.

Follow a 1 step instruction for at least 50% of the time.

I mean not very difficult to meet the target for…..

danni that’s great. Even though they might be basic he wasn’t meeting them in his old school, at least he’s getting the chance to take turns with a friend there. Remember too that the targets only include things they are not yet doing and all the stuff he’s already good at doesn’t need to be on there and you know he’s bright.

Ds and I went for a walk to the post office today, so nice to be getting him out daily. We saw our first snowdrops.

There’s a thread on this so not just me but I’m always confused by LDs . So what behaviours dimples is she referring to when she says these indicate a LD? Impulsivity? Being more than a certain number of years behind academically? Needing more help than the average child of the same age? I know there’s a technical IQ test but beyond that how are LDs ‘diagnosed’?! What would a child be doing that makes someone knowledgeable say ah, he has a learning disability as opposed to ‘just’ asd/ adhd/ dyspraxia etc etc?

@carriebradshawwithlessshoes

This pic is from mencap charity.

(Here, it’s global development delay until age 7 (to give them chance to catch up) then after that if still delayed to an obvious extent then it’s learning disability)

They learn / pick up skills much slower pace than somebody without a learning disability, and often need support to learn / pick those skills up.

Meant to say that’s great re the call Danni! I’d have been inclined to have asked if they are so happy why they were moaning 2 days ago so much about sleepless nights and so on. They are dramatists aren’t they?! 😆😆

That sounds a positive meeting Danni

DS is still on waiting list for ASD assessment (it's been almost 2 years). Not waiting for learning disability assessment- saw Ed Psych last year but they didn't do any cognitive assessment (which was what I wanted). I think DS probably has moderate learning disabilities. The therapist today was asking if anyone had assessed what age he is functioning at - which no one has. At school in Yr 4 he is working towards Yr1 in maths and writing, he is a little stronger in reading. Carrie, yes the therapist was talking in particular about lack of impulse control where DS functions more like a toddler.

I think you’ve posted that before danni. Looks like possibly mild to moderate for ds then, though tricky because when he’s motivated he can pick up things very well. I think that even with LD it doesn’t mean that they can’t be smart at all, just that they possibly learn in a different way to a NT child. It’s not actually black & white, but a spectrum like many things in life and growth and maturity happens. I don’t know if LD is only present if IQ is less than average or if it’s separate to that. Will have to Google.

Ds used a knife for the first time last night, he asked to. It was pretty amazing. We’ll be working on that for Feb if he’s willing. Though he does only eat one food that needs cutting with a knife 😆

Some NICE document, may be out of date:

“ICD-10 defines 4 degrees of learning disability: mild (an IQ of 50– 69), moderate (an IQ of 35–49), severe (an IQ of 20–34) and profound (an IQ of less than 20).”

70 is considered normal I think. I don’t really know what 50-69 would look like in a non-autistic person. I find it hard to think that ds’ IQ is less than 70, let alone 50 but I don’t have a baseline to compare him to.

No school in the end for ds today as not enough staff for proper ratios.

It’s very blurred isn’t it. I’ve loads of books saying non verbal kids will almost always be labelled with LD because the language skills they need to perform the test isn’t there. I think even with the testing though, is it not the case that many (probably my DS!) just wouldn’t even engage with the testing so therefore would automatically score zero?! Also impulsivity as per dimples last post is a classic adhd trait isn’t it (as opposed to LD.) I’ve no idea though. One thing I do dislike is slapping labels on children which are very hard to shake off (Dannis example of the consultant writing ‘significant’ LDs…), based on what test/ assessment? And what other factors may be at play for that test? Surely not a one day only test?

we have a nightmare day today. DS having a sleep deprived eeg so we’re told to give him no or less than half his average sleep and no melatonin last night. Interestingly on no melatonin at all he was still bouncing around last night at 12.30 so that’s what a day would look like for us without it. He dropped off then and we got him up at 5. He’s like a Duracel battery though, there’s still no guarantee that when they try to do the test at 1 pm (they give melatonin then) he will sleep which means the whole exercise may be a waste of time!

Info on learning difficulties. Further down the page there’s a link to definitions for a learning disability. The distinctions are not clear though. Something like dyslexia is pretty straightforward but not when it’s more general.

www.datadictionary.nhs.uk/nhs_business_definitions/learning_difficulty.html

carrie I shouldn’t speak for danni but I think that was given when her ds was younger, much less verbal and also showing more challenging behaviour. Which makes the point that he has since progressed a lot and the original diagnosis was not accurate.

If a child is NV then they probably have to use other more hands on methods, like puzzles? I think if the child won’t cooperate then they wouldn’t be able to make a definitive conclusion.

Good luck today, sounds tough.

Oh I’m not sure, is it danni? I thought it was his first CAHMS assessment which was in the last year??? But time goes so quickly doesn’t it so it possibly was longer.

yes, DS wouldn’t do the puzzles though either! And he may do some work but only in set environments (with me, not in school etc). I doubt it would be a good outcome!

thank you for the good wishes, I’ll let you know… fortunately this is once in a blue moon event!

Ds had an IQ test when we were having him assessed (so around 4 years old). She said he had average to above average intelligence. Having said that her report show that he didn't manage to complete a single kind of test so she used three or four different ones.
I totally agree Carrie, I don't think IQ tests are really made for autistic kids.

Dimples it's really rubbish that they haven't given your ds a diagnosis for anything yet, I hope this new person can push it through for you.

Carrie I think ds finds everything outside the house massively overwhelming and a sensory nightmare. Everything in the house is controllable for him, everything outside could change at any second.
Good luck with the assessment today.

Danni sorry ds has had a run of challenging behaviour. Great that he's meeting targets though.

The tiredness is very debilitating Ahna. Sorry it's difficult for you at the moment.

That's brilliant about the knife open!

Ds has gone to school today but we have dd home. I've picked up the lurgy that she had last week though so feeling pretty sorry for myself. Thankfully the grandparents are coming to stay today so hopefully dd won't be too bored!

That’s interesting liv. Would you say that ds is behind academically even with that IQ, or not? When ds got birthday cards from his classmates I was heartened to see that many of them had a similar level of writing as ds who is very behind.

Sorry you feel rubbish. Dh has been poorly the last few days too. We seem to have had constant colds here since Christmas.

That does not sound like a fun day, Carrie. Good luck

I kept DS off school despite being told to send him in for the morning. We're going swimming shortly which I think will be more 'enriching' than school today.

Liv was that IQ test part of a CAMHS assessment or did you go private for that?

I was just thinking that in DS's EHCP description of needs it starts with due to global developmental delay it takes him longer to learn things, needs over-learning etc. So I think GDD would be replaced with learning disabilities at some point. But then in addition to that his ASD/ADHD traits impair his ability to concentrate and as his OT recently observed he is hyper-vigilant about sensory inputs. It must be so exhausting to be him.

My gorgeous boy very happy to be off today and danced around the house singing when I told him the plan.