Primary school auties: summer and the new academic year - thread 7

[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

When people, usually drs at his appointments, ask me what time does he go to sleep? What time does he get up?

Depends what day your asking me, today’s answer will be different to tomorrows. Varies wildly!

All I know is, lately. It’s the worst it’s ever been sleep wise.

Ps I was going to bed, I’m now laid looking at blood pressure monitors & Googling how to get children to swallow tablets (this extended release isn’t allowed to be mixed, it stops it being extended release ffs)

But of course ds won’t swallow it, I’ve been trying nearly 3 months to get him to swallow the ones he’s been on (I crush it and mix it in smoothie instead) it’s a capsule he’s got for tomorrow, can he opened and sprinkled onto a spoon of yoghurt but not mixed into a drink. That makes sense

If I sprinkle it into smoothie and give it a little stir to disguise that’s probably going to have to do. I don’t see how that’s any different to adding it into a spoon of yogurt?

His smoothie is thick anyway (Tesco strawberry one) I’ll report back tomorrow.

Danni don’t look at blood pressure monitors now, it will be going up before bed 🤣🤣. Sorry your posts do make me laugh sometimes. When you said about you trying it on at DSs appointment I knew what you were going to say!! Reminded me of a work friend who went to see a friend in hospital he was in bed. Work friend came over all hospital quesy (sp) and passed out, sick friend was asked to move into the chair out of the bed whilst work friend laid on the bed for a dr check over…. 🤣🤣. Joking aside yes keep an eye on it.

Open amazing news, so pleased!

Dimples you may well be surprised when you look round, some settings are really impressive.

Random qu… I know our DC have different presentations but do any of you ever think about an adhd/add assessment? I understand v little but even some kids who just have focus/ attention/motivation issues apparently can benefit from meds. So they say!! Not just the ones bouncing off the walls. DS has the former all of the time and the latter some. Christ he can’t even sit down in school!! I’m hovering over making a private appointment… what’s to lose??!

If ds woke at 7/8am I would be too scared to enter his room to check he was still alive (that’s how rare that occasion would be!!)

Yes, me too. I’d be awake and worrying long before that.

I would hope if they thought I was barking up the wrong tree they would be qualified enough to know and tell me. It’s been an ok few days but he is at the moment just incessantly moving/ jumping/ running. When I pin him down he can do so much but sometimes I literally have to sit on him almost to just keep him still!

DS just gone to sleep here!!
@carriebradshawwithlessshoes does he have proprioception issues? DS does and so the constant movement is related to that and trying to get that input. Sensory circuits helps, and weighted blankets and trampolining, but he fidgets a lot still so we have fidget toys etc but drives me mad with the fidgeting! DH us the same, always messing with something or peeling tape off something etc. The OT advice I got was to try and redirect not stop, so chewing random stuff becomes chewing the chewelry, and weighted blanket gives DS so much input it really calms him.

Ha ha Magrat you have a fidgety house!!! Yes he does… I know some people are quite fidgety and for DS that would be ok but sometimes it’s just all encompassing. Like he’s been out today for lots of exercise (park, walk) yet still had persisted for hours this eve just running into every room then in the kitchen he’s pulling open freezer/ fridge doors, oven doors, cutlery drawers, rummaging in the cutlery, running to another room, there’s been 4 adults here (parents) and it’s literally like someone has to be chasing him round. I got out a couple of toys snd he just screamed his head off because I was halting him, I gave in. Then even if he’s in one room he’s just jumping on the spot constantly. He’s a little climbing frame and we have it in a room, even when he’s watching tv he’s climbing over and over. DH says I know we criticise them but how is school supposed to work with this?!!!!!

He has a weighted blanket at bed but like this eve I don’t think it would calm him. Don’t laugh but DH bought as a fad one of those weighted exercise vest things, I was literally in the verge of strapping it on DS this eve just to slow him down, DH was like you can’t do that, it’s about 10kg!! 🤣🤣🤣🤣

Might be if there's too many people too, Mt DS gets v overwhelmed with too much family etc. His new craze is opening the fridge all the time ha! Look into sensory circuits. They do them every morning at DS' school to regulate the kids at start of the day. I also just let him spin when he wants to, which helps!
Yes, they are both fidgets!! I live it on my own sometimes as I can just be still ha (but then I get bored!)

danni I hope you had a good night in the end, keen to hear.

dimples so much depends on the teacher doesn't it, the difference between and good year or not. I hope you find a great local school.

Ds awake at 4:15 today but stayed in bed for about 30 minutes before he got up.

carrie I don’t know much about an adhd diagnosis but I expect there is a list of behaviours and a threshold that needs to be crossed. Possibly there’s a pre-screening involved.

My ds is often very bouncy and fidgety, his current thing is jumping all over the sofas and back into the floor but he also does the zoning out thing too, which we’ve talked about upthread. The movement is part self-regulation and part excitement I think, a stim. Hopefully the new school will be able to identify if there’s anything else going on.

Oh Magrat opening the fridge is not a good habit. My DS loves crunching ice and is always on the hunt for ice lollies or cubes in the freezer. Last night after spending only about 10 mins settling DD I came down to find the freezer open, water all over the bathroom floor as DS had flooded the washbasin and also that he had scribbled highlighter all over the wall.

We're at music therapy now. The therapist always looks tired after half an hour with DS. She actually just said that she can see real improvement in his concentration.

With my DS it seems that he is at 100mph or 0!

Interesting @dimples76 we have the ice thing too. DS is lollipop mad in the summer (I've told him the supermarkets don't stock them in winter otherwise it would be all the time!) And he loves crunching ice. I thought it might be a sensory input type thing? Great the music therapy went well.

Crunching ice can be a symptom of anaemia if that’s a possibility? Most likely just a sensory thing though.

I speak from experience!

Open and Magrat interestingly he had a blood test earlier in the year which showed he was mildly anaemic however, there was no reduction in the ice habit when he had iron medicine. I think that it it is sensory seeking - he is always chewing his clothes, nails etc - anything other than the sensory toys which I buy to be chewed!

Sorry I didn’t update, I wrote a ranty message out at 1am this morning then deleted it before I posted as didn’t want to say things I would regret writing when I got up. At one point in my ranty message I was threatening to call social services in the morning to take my child away as I’d had enough … I was exhausted.

Ds sleep is actually worse on these two sleep medications.

He was awake until quarter to one this morning. Hitting me, having angry trantrums, banging on the walls and waking the neighbours up etc. I took him in my car at 11pm and was just driving the streets.

He would only sleep in my bed and as I say went to sleep just before 1am and then I’ve had to wake him up at 7.30am for his medication this morning.

It’s his adhd medication 100% keeping him awake.

I think going forwards, I’m going to medicate him Monday-Friday for school then let him have the weekends off, for me his medication is causing more problems than it’s solving.

I’ll medicate him for a school as even if it’s only a small difference in him I could do without him being turfed out of school when there is nowhere remotely close that could take him.

I’ve read quite a bit on here and some parents do only medicate on school days, so I think I may trial that and see how his sleep is on a weekend without adhd medication. For a weekend or two.

Equasym XL is like a blue and white capsule and you twist it apart and it’s little white balls and you can add it into soft food if they won’t swallow the pill and he 100% won’t do that, so I tried it in his usual smoothie his old adhd meds went into and it was a nightmare, all the balls stuck around the rim of the cup and I had to keep filling the cup up with water and smoothie to get some more down him, he was getting suspicious after his 3rd drink can’t be doing with that faff every day. If he knows I’m adding stuff to his food or drink he’ll not eat or drink again and it doesn’t dissolve, just sits swimming around sticking to the sides of the cup.

So I’ve used an activia peach creamy yogurt this morning, he likes those, I put it in stirred it and he ate the whole thing including medication and thankfully didn’t realise.

Now I’m having to make a thing of yogurt being part of his breakfast routine because he will eat it some days and absolutely refuse other days. So I’ve told him he needs to eat a yogurt every morning, king thistle told me that’s what Ben and holly have for breakfast etc etc 😂 things you have to do.

Oh danni, you must be so frustrated that none of this medication is helping. My heart goes out to you.

Ds was awake at 3:15 yesterday and 4:20 today, it's not easy. I didn't sleep well myself last night either which didn't help when I heard his dulcet tones this morning.

Hi Danni, I’m really sorry to hear this. Ok ok I’m thick here, but just to reason it out… presumably the meds are to work on the parts of the brain that are over stimulated/ over excitable which contributes to the signs of adhd. So a calmer, essentially? If that’s right how are they stimulating him this much? I’m sorry I didn’t digest properly upthread but did you say there are stimulant and non stimulant types? Is he possibly on the wrong type? What did the dr say when you presumably tell him about the sleep? Do they suggest anything?

Open I’m sorry to hear about the early starts. I know if DS has been up in the night I can’t sleep because it’s like I’m anticipating him waking. Can you ask for some more melatonin, try the crushing as we discussed, esp if it’s a weekend… for eg, DS has form of being up 3 hours when he wakes so if he was up at 3 he would possibly, with melatonin, be asleep again at 5/6, if no school we would just then get our heads down for another couple of hours as would he. Stupidly simple thing to say but does him going to bed later not help? If it was DS I’d be keeping him up til 11/midnight (I appreciate that is in itself a total ballsache but at least it’s a time I’m up) to try and break the cycle. It’s the same no of hours but midnight to 7 is far more bearable than say 8 til 3 if he only needs 7 hours sleep??

None of the above is probably at all helpful but just thinking aloud.

DS has to go back to school tmrw which is filling me with dread. Actually more than, its making me really unwell at the moment. Also just stupid thinking on my part at the moment seems to have taken over, imagining worst case scenarios for him for the long term future. The Dr prescribed me some ADs a while ago, I’ve not been taking them but may need to rethink. I find it very hard not to stress about him as an adult, I seem to have seen a lot of adults with (v severe) issues out and about recently and I keep thinking will that be him? Is it just me who is this daft? He was having a paddy yesterday eve and I caught DD watching him and crying. She also said about something they did at school on Friday when I kept him off that he would have loved it (then glared at me.)

Anyway I’ll take my cheery self off now…sorry.

carrie ds still wakes early when he goes to sleep late. Last night he didn't fall asleep until 8:50. I don't think I could bear to keep him up until 11. Dh and I are usually asleep at 10ish so even if he wakes at 4 it's a good six hours and only every other day as we take turns. When we have a super early wake we tend to do shifts and that compounds it a bit, especially when there's a few over a week or more.

Ds is actually fine with taking the melatonin tablet. If I crushed it I'd have nothing to add it to as he eats no suitable foods really, apart from rice pudding and not sure I could give him that at 3am. I think the liquid would be better assuming it tastes ok.

carrie I'm sorry you're dreading back to school. Try really hard not to worry about the future, it's hard but whatever the future is it likely won't be as you're imagining it. Think about what skills he's going to need as an adult and make a plan for trying to teach them at an appropriate time. He will grow and change so much and from what you've said he's very bright. Bright and quirky is not so bad. Once he gets into a better school I'm sure he will thrive and they will teach all sorts of skills

Open ds melatonin is liquid, it’s strawberry flavour. The brand name is Ascomel. The Promethezine (phenergen) is orange flavour and you can buy that in boots OTC so I’m told. They sell the tablets too & it does say on the packet for children over age 2 to aid sleep.

Carrie, when I told the consultant his sleep is affected, he just told me to increase the dose of Promethezine and to give him melatonin at the same time. Which I’ve been doing and it’s having no effect. No idea why it keeps them awake, obvs it is a stimulant but it doesn’t stimulate ds behaviour as in like it would you or me if we took one, but it is keeping him awake, but that is quite a common side affect so I’ve read. Just not a side affect I can be arsed with when he’s so full on in the day.

The non stimulant one I could try eventually but the one he is on is the main one to treat adhd so the dr wanted to keep him on it. (For now, anyway)

I’ll see how tonight goes, he’s had a bath. Looks a bit tired, I’m going to give him his medication and see…. Be back at midnight ranting! 😂

Carrie, yes I wonder about ds as an adult, makes me feel ill.

www.boots.com/phenergan-25mg-tablets---56-tablets-10298435

Here open, it says children under 5 to have the liquid (which is what ds takes) and children over 5 to take 1 tablet per night. It says for sleep etc.

I’m not suggesting you drug ds or anything but handy to have if really needed.

It’s the same brand ds is prescribed, same packaging etc.