Primary school auties : spring 2021 and beyond - thread 6

[danni0509]

Hi. 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

Everyone welcome x

Who’s going to do the honours of the new thread?

I won’t be greedy, I did this one x

Well ds has refused to go in today. I have spent a bit of time feeling sorry for myself for having had no time to myself for nearly two months and with 6 more weeks ahead. Sigh.

Still, on the plus side we managed to find somewhere reasonable to book for a week away in August. Really hoping we won’t be at peak Covid by then!

danni I don’t mean he got better than expected standard for those two things. He just made better progress than they expected him to in those areas. Who knows what they actually expected from him. Your ds is streaks ahead of mine in maths.

Oh yeah I knew you meant that, better than what they expected.

I know what you mean about what they actually expect though, they have their bar set really low for ds. Annoyingly.

That’s good you have something booked for august. Does ds like going away? My ds likes to go away.

danni he loves going away somewhere on holiday. So much so that we had a couple of times when it was an absolute nightmare getting him to leave when it was time to go! Hopefully we're past that stage now but we will have to think about incentives just in case we need them.

How do you cope with the awfulness of some other children? At ds' insistence this afternoon we walked down to one of the local parks. I braced myself, I knew it would be difficult. Ds tried really hard. He was obviously a little bit different but he told children his name, he really tried to join in and play but they all just ignored him pretty much. It absolutely breaks my heart. I don't know if part of it is just that they don't know him and it's the price to pay for not putting him in the local school, or if it's just because they know he's a bit different. I don't know how I'm going to get through the next several weeks that there's no school. The thought of going there regularly fills me with dread but maybe if they saw him more frequently they would warm up a bit and I just have to put on my big girl pants?

We can and will go to other parks. If we go to parks where he goes to school then he's more likely to see kids he knows and it will hopefully be easier. I will have to try and keep him busy, but I know he's going to want to go back there too. To top it all he absolutely refused to leave because he was still having fun. I had to get dh to come and help and even then it took us half an hour to get away.

Open, first fab re the holiday! That sounds lovely. Well done on finding it everything is ridiculously scarce at the moment. I’m sure you will have a wonderful time.

Re the park, I think it’s great your DS introduces himself and so on. That’s really nice interaction! I think kids can generally be funny… my DD aged 9 (just) and NT every day tentatively approaches a group on a morning which she goes to school with ffs, she is quite shy, she says hello! They blank her and carry on their conversation so she comes back to me and holds my hand. It annoys me no bloody end I even mentioned to the teacher recently. I just think some kids aren’t very nice or are very cliquey. Carry on going to the park, lovely your DS enjoys it. It will no doubt be another group next time you go…

carrie my dh thinks it’s just kids being cliquey too. I just wish one of them had been kind to him. On the way there I reminded him what he should do, because the last two times we’ve been to a park he’s acted very differently. He did everything right, bless him. Right towards the end some boys who had been playing football had a bit of a water fight and it was a bit better but this was after a painful (for me) hour really. I need to grow a thicker skin don’t I? Unlike your dd he doesn’t really take the hint and will just persist and persist and not listen to me or be distracted away. This particular park is in the middle of a housing development so the kids there are all local to it.

We were super lucky with the holiday home. It’s only got a little courtyard rather than a garden but otherwise nice and, amazingly, the price we’d usually pay. I guess everything is going to be much busier out and about than usual. We’ll need to book some tickets.

Tomorrow afternoon we are meeting one of ds’ friends so that should be good. It would be nice if he went into school for a while in the morning.

I had a terrible night with ds last night.

He finally went to sleep at 9.30pm after much fucking around, I came down and had an hour doing what I needed to do went up at 10.30pm myself. He was up at 11.30pm and stayed awake until 5 this morning then went back to sleep but only for 2 hours.

I tried him off the melatonin the other night, the night after I said I was giving him a break and he didn’t go to sleep until nearly midnight so sacked that idea straight off.

He was shouting really loud last night, singing, spitting at me, not just laid quiet for the time he was awake, just being really hyper and horrible.

He’s making me depressed.

I can’t do him all day AND all night not with how bad his behaviour is. I’ll crack up.

Or should I say making me MORE depressed.

danni that’s really hard. What’s your plan for getting through today?

Ds has gone into school. It’s Zoom leaving assembly so goodness knows how that will go!

I took him to the park at 9.30 with my mum, he hit her in the face and broke her sunglasses and then chucked his shoes from the car window driving her home, he didn’t play in the park he just kept bugging me and my mum on the bench saying swear words so he got a reaction from either of us, so that trip out was a pointless disaster.

He’s just on his iPad now and once I’ve sorted the washing he’s coming out to help me hoover my car to pass a bit of time.

I’ve ordered him some pop tubes (like a sensory toy) from Amazon they are coming later, I’m sure they’ll amuse him for all of 15 seconds

I’m going to do some sensory work with him in a bit, squash him with some cushions etc! See it chills him out a bit.

Good luck for your zoom assembly x

Danni sorry it's so tough. You really need a break, don't you. Can your Mum or husband look after him at the weekend to give you a break?

That's good that your DS went into school today Open.

Today was meant to be a work day but I have been up most of the night with DD coughing. So obviously no nursery for her, drive thru test centre instead. DS was meant to be at Granny/Auntie's house but my sister had to go to fracture clinic after a horse riding accident yesterday (she now needs to rest as shoulder is broken). My Gran who also lives with them is waiting for the Dr to come out as she is v unwell. I feel bad because I can't help them (and they can't help me!). I have decided to get a coffee delivery as I'm so tired and have foolishly given in to DS's campaign of attrition and got the bouncy castle out again.

Coffee delivery? Sounds fab!
That’s tough dimples, I hope dd is -ve. How many times is this now?

Open I’ve completely lost the plot, I meant to log onto here and type your name on a post to type something to you but instead I typed open into google

Anyway, I’ve just been reading about melatonin, did you know (you may already) that giving melatonin and then watching any kind of tv / iPad after cancels out the affects, same as having the light on after giving the medicine (which makes sense as melatonin is produced by the body in the dark)

usually i give it to ds, he has a drink, then has his teeth cleaned / nappy / pyjamas and he gets in bed and I give him his iPad whilst I tidy around then after about 30 mins I take his iPad then he lays down with the light ON (he doesn’t like it off)

So I’m going to change that.

I also read you can top up their melatonin if they wake in the night, by giving 2/3mg.

Also melatonin is best to be given 30 minutes before you want them asleep, (although his consultant said 60-90 minutes, I don’t do that long but I also don’t do 30 minutes in advance) I tend to give him it then try lay him down 1 hour later.

I think I may try a new approach…

Dimples I want one of those bouncy castles.

I hope dd is ok, sorry about your sister / gran / your work situation x

Hi danni, I didn’t know that. Because in the past we never had issues getting ds to sleep we used to give him the melatonin closer to bedtime and his was slow release anyway. We haven’t got any currently. We took a break for a year and when we had it for couple of months recently the doctor didn’t put it on repeat prescription.

I have done something a bit different today.

Ds usually has a chocolate bar after his tea but I said he had to have it after lunch today and he’s not allowed chocolate that late anymore. He wasn’t happy but tough. I haven’t given him his iPad after tea either, he’s glued to the freaking thing and causes so many issues before bed so I’ve said before tea and not after, so he had his tea (which I gave him a bit later at 5.30 rather than 4.30 because I think that’s a bit too early and then he wants snack after snack nearer bedtime) and then he had his bath, afterwards he played with those pop tubes (which he loved!) he had a drink and got ready for bed and I gave him his melatonin at 7.15pm then I gave him his books on his bed and whispered he had to read quietly, at 7.45 I took his books and said sleep now no getting out etc.

He only went straight to sleep like within 2 mins flat 😂

Just hope he stays asleep!

I mean he could’ve gone straight to sleep because he was awake most of the night. We will see.

If he wakes tonight I’ll try giving him half a dose of melatonin just to see if it works.

Least I have a couple of hours now (fingers crossed) to sit in bleeding peace before I go to bed.

Enjoy your evening danni. Hopefully you’ve found a successful new routine.

Ds has gone to sleep at 8 the last two nights. He still gets up and comes downstairs but goes back after 5 minutes. This morning he was up at 3:30. Hopefully later tomorrow.

Fingers crossed Danni. I think the whole melatonin debate is trial and error… DSs paed says to give it when he’s slightly drowsy also as you say just calm after giving it to him. We do have the TV on but low lights etc. If he wakes up we crush any more melatonin to make it fast working. We also find keeping him in his room though a total battle gets him back off again quicker than activity in the house. I’ve said before but we do string it out. So dS had his melatonin 5 mins ago but I’m reading in bed with him and trying to string out bedtime. For DS we do find a later bedtime gives a better chance of a later wake up time and no night waking. But they are all different.

Something happened this morning which has set me worrying (more). I think I said DS got an epilepsy diagnosis when he was 3. He’s been on a v v low dose of epilim since but his Dr said to watch out for anything odd.

Do you find that your Dc ever do zone out, almost a behavioural/ asd thing, just a characteristic? This morning we went into the garden, it was hot, DS was running around. He came over to the patio table which was roasting and put his hands on it and just sort of looked at the table. I think he was enjoying the sensory feel, I said DS it’s hot! He didn’t react to me but kept looking at the table. I grabbed my phone and hit record, the clip is like 15 seconds. In the end I touch his face and he jumps, like I’d suddenly got his attention and runs off.

I sent it to the Dr who is reviewing but the nurse made some comment about him being unresponsive. Normally he does respond to his name etc etc but can get engrossed in things like looking at an image or feeling the heat then he can for a short time zone out/ get lost in his own thoughts, I’ve never thought of this as epilepsy, more I suppose a sensory dysfunction now I’m worried…

Danni fwiw I do ease off the sweet stuff in the pm. Yesterday was an exception, DHs bthday. We had family over, DS was being v good. Then when the cake came out I felt I should give DS some, it was 7ish. Honest to god I saw it happen… 10 mins after eating it he was racing up and down the garden like a lunatic, jumping, flapping etc. He calmed down but I’m sure it was that…

Carrie. Ds had to have an evaluation with epilepsy clinic because of zoning out, his old school made me take him to the gp in reception.

The epilepsy consultant said he didn’t have epilepsy and it’s really common in autism to ‘zone out’

but obviously if your ds does have epilepsy then it’s obvs best to get it reviewed like you have done, hopefully everything will be ok x

Since I was up I thought I’d start the new thread - thanks ds . See you there.

www.mumsnet.com/Talk/special_needs/4303826-Primary-school-auties-summer-and-the-new-academic-year-thread-7?watched=1

Thread closed.