Primary school auties step into Christmas and the New Year - thread 8

[openupmyeagereyes]

New thread.

This is the continuation of the thread for parents / carers of autistic children / children with additional needs. Most of us are parents of children in year 1 / year 2.

Links to old threads

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

It can be hard to change the status quo Mumofsend. I guess the questions to ask yourself are is she learning with peers, is she making progress, does she have friends, is the school supporting her as they should be? If not then it might be best to look at a different setting.

Ds currently having a tantrum about something not working how he wants in his game. It’s a regular occurrence sadly, he gets something in his head and can’t move on from it. I hate the bloody thing but I know if it wasn’t that it would be something else.

Habits for anyone still following:
52 small changes keep a food journal, and track everything you eat and drink each day.
52 small changes for the mind be a goal setter, work towards goals.

Obviously the books give the theory behind it, each week has a different chapter.

Unfortunately Open I think that I am only managing drinking more water and listening to different music. DD has just started giving Alexa instructions and as she is 2.5 her song choices are often misconstrued, so I am hearing all sorts of weird and wonderful music.

MumofSend great news re the reading. We're in a similar position with school. DS loves his school and has a really strong sense of belonging there but I think that the environment is not right (overwhelming auditory and visual processing), the attainment gap is widening and he doesn't really have any proper (by which I mean equal) friendships. He is v popular in general but we never get any invites to play dates or birthday celebrations any more. I haven't done any home schooling when we have been isolating this time as DS has either been clearly unwell or just a bit floppy. We started watching someone reading the book that they are studying in literacy and it really made me think that I need to move him - only so much differentiation will work. The homework this week is practicing 4x times table which is being tested next week. DS can do 10x at a push.

Day 5 (for me) and 7 for DS and both strongly positive. I really wanted to send him back tomorrow. Our 8th day stuck at home has been a toughie. I am currently sitting on a bean bag in the living room as DS has weed on both sofas and DD is in my bed.

Ds has been awake since 1.10 today and 3 yesterday morning: Argh what is the point in that. 2 sleep medications aswell, never fucking ending.

What do you genuinely do when they are on max doses of sleep medications but they still don’t SLEEP ?

My friend is a nurse and on her ward they sometimes get patients with learning disability etc and they wander through the night so they give them sleep medications, one patient is a regular and she is given both medications ds takes, she said she is out cold for 10 hours she doesn’t even wake up when my friend does her blood pressure checks or anything.

Feeling hopeless at the minute and tired

dimples sorry that your tests are still positive. So hard being stuck in with young children. Are you both feeling better at least?

danni that sounds awful, is there other meds he can try? I think your dh needs to step up so you can get some rest, have you ever talked about this with him?

I’m not sure what else there is to try open nothing has been mentioned, they increased his promethezine again last week, but of course at the same time also increased his stimulant medication, it’s probably the same as us having a few strong coffees before trying to go to sleep so I’m not suprised his sleep medication is more or less being cancelled out . (I’ve been giving him adhd medication on a weekend for the past 3 weekends, I’ll come back later and explain that, typing quick cos I need to do ds breakfast / medication and get him sorted for school)

Regarding dh, he is usually awake too when he’s not at work, my house is a tiny 2 bed. 2 up 2 down. So when ds is awake we all are, you can’t not be, he’s sooo noisy! we’ve both been sat drinking coffee early hours this morning as ds would not go back to sleep and has been playing up screaming, plus dh works up to (and definitely more so lately) 60 hours a week in a physical job, he’s pretty much dead on his feet, so I don’t feel I can expect him to sort ds solely on his own, on his day off. (He’s also useless with him, despite me forever telling him to do this with him / do that with him, he makes matters worse without even meaning to )

Difficult! 😞

Danni that sounds so tough. Has the new ADHD medication regime started yet? Do you keep a sleep diary - just as evidence for the medics?

DS tested positive again! Light are you out of isolation yet? Open not feeling 100% but in normal circumstances would be back at work. That said DS slept for 1.5 hours yesterday afternoon.

Carrie I have managed to film some of DS's absences/seizures. I realised that they are often happening at meal times so I just let the camera roll at tea and in the space of a few minutes captured two. We are at the hospital the week after next.

Our EHCP appeal re OT provision continues. I was meant to be meeting DS's teacher tomorrow, postponed from last week but now I can't because of DS's isolation

Sorry gone quiet…. Work overload just at the moment unfortunately.

Dimples, good you have that. I think it will be really useful.

Open, when does DS start new school?

Danni, can you give the melatonin later/ higher dose? Sorry correct me if I’m wrong but did you say it’s the liquid? Can he take the slow release? Re the adhd meds, I talked to DSs nurse and she said they are 5 hour release, 8 hour release etc… so if given in the morning should get him through school but not affect the eve? Assuming you don’t top up after a certain time?

Took DS for the ecg this morning which was fun… managed to get it done but not without me laying on him and him eating a pack of soft mints….

We are still in isolation! I'm not hopeful we'll be out soon. DD went in to school today on Day 10 (so only 1 day ahead of the maximum). DS is still only on Day 7, so could have at least another couple at home if his tests follow the same pattern as DD's. And then I'm a day behind him. So far our tests all seem to be following a very similar pattern unfortunately (and I'm still slightly symptomatic, unlike both of them).

ECG sounds tricky @carriebradshawwithlessshoes but a packet of soft mints sounds a good strategy - it's not like it's an every day occurrence and definitely a stressful thing!

Hope today went well @openupmyeagereyes and that you finally get some sleep @danni0509. It sounds tricky with the schools @Mumofsend. Very positive on the reading but hard to know if she could be happier somewhere else.

@dimples76 hope you are out of isolation soon and DS stops distributing his wee around the living room. Only one of our sofas has removable covers (and even that one they are a right pain to get on and off) so drives me nuts when DS wees on them. Hope your tests go negative so you are released soon! DD went from quite strong to very faint in a day - but then had a further couple of days of faint lines until there was really nothing there after 15 minutes. Hopefully it will be quicker for you and DS (and me and my DS!)

carrie ds doesn’t take that one. Ds takes it 3 times a day, each dose lasts 4 hours. So he has 8am,12noon, 4pm. I don’t and never have given him 4pm.

So he has 10mg at 8am, 5mg at 12 noon. Jeeze if I gave him 4pm dose I doubt he’d ever sleep again 😂

You’re talking of the slow release, it’s supposed to last for 8 hours a day, ds tried that for a week, equasym XL it was called and it was horrible, he didn’t eat at all and his mood was badly affected, school complained every single as he was awfully behaved taking that one.

As for melatonin, he has liquid, 5mg a night, then 17.5mg of promethezine aswell. Both of these have been increased. (Melatonin isn’t slow release, they don’t do that one at our paediatricians)

Ive tried all sorts by way of administering, giving them half hour apart, 1 hour apart (as advised by CAMHS) even both together! I’ve tried one per night. Experimented with Later, earlier.

Only thing I haven’t yet tried is giving him the bottle and a straw 🤣

Ah we are on the ADHD meds discussion today at our CDC appointment. Before we can go for meds we need to try and figure if we can even get them in her. Nearly all have been ruled out for DD for various reasons and the only one left is once a day at night. It tastes gross and you can't successfully conceal the taste

dimples my sofa cover is currently in the wash, ds did the same tonight! It needs to go in the dryer and I have to wrestle the thing back on, which is such a task, I end up laid on the floor pushing it in trying not to burst the zip, it was too much of a wet patch to scrub and I don’t fancy eau de piss every time I sit down which has happened once before.

I crush ds’ and add it into a Tesco smoothie, school crush and add it into blackcurrant juice (which they are making me buy and send now, only £1 a bottle but not the point 😂 because apparently ds isn’t on school dinners so they can’t give him a juice at lunch time, even though they did for 2 weeks until they asked me to buy it - how fucking ridiculous, they have juice in the kitchen and it’s mostly water, tight bastards, he brings them enough £)

@danni0509 how ridiculous of school!

The one DD would be on is a capsule that can't be crushed. She can't have the usual go to meds for various reasons so choice is limited

Is it intuniv or atomoxetine / strattera mum they are non stimulant ones. For some reason they only want to give ds a stimulant (I suspect it’s because it’s cheaper) and they say it’s the most common one to prescribe for hyperactive / impulsive adhd, but he’s no less impulsive or hyperactive so not that good really is it

I don’t know if you can disguise those ones, I’ve read about them but don’t know how you administer I didn’t read that far, you can request liquid for some of the adhd meds, they can send it to a compound clinic to be made into strawberry or orange flavour, the pharmacist told me. It just costs more so the drs don’t like it.

Have you read Russel Barkley on YouTube? He’s an adhd dr. If you search adhd videos, he’s got some good ideas / tips for adhd / good information. I would say good for autism too if anyone fancies a read.

We went to see the school today. Ds was a bit nervous going in but we ended up staying for two hours and he didn't want to leave. It was all about the equipment for him, of course, and I knew that would be the case. Hopefully at some point he'll settle down and get on with something else...

It was as good a start as we could have hoped for but he's already saying he doesn't want to go without me tomorrow afternoon. Some of the kids are doing a really gradual start, two hours twice a week etc. so there should be no pressure, thankfully.

The place looks great, lots of good equipment with more to come apparently and we spoke briefly to the OT who will be there three days a week. One of the TA's in his class is really interested in sensory integration and seems very knowledgeable.

I still don't think it's going to be easy at all but so far so good.

Sounds promising Open, well done to you and DS

That does sound promising @openupmyeagereyes and well done DS - it's not easy starting somewhere new. Sounds like there are a few other new people starting with him though, and hopefully that (and the great equipment!) will help him settle in!

danni I hope you got more sleep last night.

I hope those still testing +ve are out of isolation soon.

Open that sounds a brilliant start!!! X

I’m interested in adhd comments as hopefully next week we may be able to start!! Danni, I know your DS has reacted badly to the slow release… do they say this is normal? I’ve drilled them for side effects and aside from the lower appetite they say absolutely none, no mood issues or whatever… just all positives! Maybe they are spinning me a yarn, maybe we just have to try it?

Re the melatonin, sorry if I’ve missed this upthread but why can’t be take cirdardin slow release? I’m not sure of the other med you mention but circadin slow release I think is the common slow release one. I know open has this too? You do have to get them to swallow whole but for us this is the one that keeps him asleep (usually not always.) if his sleep is such an issue I would have thought the drs would have given a slow release one? Maybe even alongside the other med?

Anyway hope sleep is better and those with Covid aren’t too poorly

carrie we used to have Circadin, the pharmacy now gives us Mylan. I think what they prescribe is different by area though. I was told that I couldn't get the liquid here.

Haha carrie what liars! They can affect mood (especially stimulants!) all you can do is trial them and see what works for your ds. Do remember my ds has severe adhd. (He was diagnosed with severe hyper kinetic disorder or pure adhd as they refer to it) Ds specialist teacher has said ds is as severe as they see and CAMHS Drs have made several comments regarding the severity so he’s probably not a usual case to try and medicate.

Watch those Russel Barkley videos on YouTube, I don’t often think anything anyone suggests is very good or useful to my situation, (although I am v greatful when people recommend stuff and always look into it, just doesn’t seem to suit ds) but I think this man is good in the way he describes adhd and what it means. He talks about medication (he’s American but the meds are just called different names here, but same thing) I enjoyed watching and he’s very relaxing to listen to. I’ll try and link the videos, they are a bit jumbled up and not clear which video comes next but try work it out. It’s worth it.

As for Circadin, they don’t prescribe slow release melatonin. It’s only one kind here, (ascomel liquid) i have asked before.

open I’m so pleased yesterday was a success! Ps ds slept fine last night.

youtube.com/channel/UCVCldvV9TWPPGM0kRB91G7w

This is the channel. Adhd videos it’s called, under this channel are all the Russel Barkley videos.

It says the numbers on each video but it gets a bit confusing, I think there’s around 2 hours of footage.