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

isn’t it then incumbent on the LA to move him somewhere where he can attend FT?

You’d think, wouldn’t you. The problem is lack of suitable schools and places. They ought at least to be offering some sort of top-up club or something.

I’m not ill yet. Ds sick twice so far.

@danni0509 I don't blame you for sending a "shitty" email. My daughter goes in a bit late though she does do a full day - and whenever it takes 10-15 mins for someone to come and get her she becomes increasingly distressed and hides / tries to leave the building. I know we're not fitting into the usual timetable but it's so stressful. The taxi driver sounds good though?! I love that he stood up for your DS...

And yes, it's exhausting, emotionally and physically - the bloody bureaucracy, paperwork, appeals, appointments. And having to defend your family the whole time. Someone raised a concern about my kids to NSPCC which got referred to Childrens Services a few weeks ago. They found nothing to worry about and closed the case, but god it was SO stressful! Clearly someone who didn't know my daughter was SEN. The additional hidden labour we have to put in - as well as actually supporting our kids

Yes open I’ve raised reduced hours with LA loads over the years, they know about the current school too as they received paperwork of ds attendance being 62% and they wanted to know why education welfare weren’t involved so school said because of a reduced timetable (ie not instigated by me!) so that’s ok….

He has his appointment soon, I’ll update when I’m done x

That’s terrible Florisse!!! Do you know who and why? I probably would be serving time behind bars if I knew that!

But Dannis DS is being placed in a SS who why isn’t it ‘suitable?’ And if it isn’t what is ‘suitable?’. I would have thought once you are a SS it’s a very hard task to argue you aren’t ‘suitable’ for a sen child (unless there’s an obvious reason like a non asd child going to a school that specifically needs an asd diagnosis etc).

They’ve upped ds meds to 5mg x 3 a day. He’d only started ds on 2.5mg x 3 to make sure of no side affects, he said that he doesn’t think 5mg x 3 will make much difference for his severe adhd either but they will move him up slowly, which is fine. He thinks optimal dose will be somewhere around 10mg morning & 10mg lunch and 5mg teatime.

I’ve got another review appointment in a month.

He has stopped ds’ melatonin now and wants him to start that Promethezine tonight, 10mg a night. He said that helps to induce sleep but keeps them asleep too and ds brain needs a rest. It’s like a antihistamine in lower doses, but he said 10mg is sedating, which I’ll have to see it to believe it first because ds was actually sedated at hospital with midazolam and it didn’t bloody work at all!

Still nothing back from school about his hours, they’ve just completely ignored me again, rude bastards!

Carrie all special schools suit different types of kids, ds school is for moderate learning disabilities predominantly, they obvs do have autism there. They also believe it or not ‘specialise’ in challenging behaviour.

There are autism specific schools, nothing around here though. If this doesn’t work out for ds, which I don’t think it’s going too then god only knows, won’t think too much about it for the minute.

danni sounds like things are moving forward. When will you review again? I hope he sleeps well tonight.

carrie there’s a massive shortage of schools. The two special schools nearest me are full with waiting lists. Kids present in such a wide variety of ways, and for many kids even though they have learning difficulties, their behaviour isn’t challenging. Finding a suitable school close enough can be difficult I think.

Ds has been sleeping pretty well for him. Yesterday he actually slept until 6:10 am

Sorry, I saw in a month’s time

florisse sorry that happened to you. It happened to a friend of mine recently. Must be such a worry.

I’m surprised my neighbour hasn’t called SS at times, some of the shrieking that (mostly!) ds does.

@carriebradshawwithlessshoes & @openupmyeagereyes I don't know who. I avoid thinking too hard about it because it's a road to nowhere - but in all honestly I can see why, out of context, someone would be concerned. DD gets very hyper, and she and her brother went through a phase early in the summer of having bottom slapping competitions, and generally behaving in a really inappropriate way trying to grab each others privates. He would copy her "crazy" behaviour - they both think bottoms and willies are the most hilarious thing ever

Anyway, a couple of months of responding with "that's so boring" and changing the subject / distracting means it doesn't really happen now but it was pretty embarrassing at the time. So I get it, but feel a bit sick that someone would see that and not understand that it was sensory and attention seeking behaviour - not abuse.

@danni0509 I hope he manages to get some rest tonight - so hard when they just cannot switch off to sleep...

How did last night go danni?

It’s tonight I’m giving him it, last night we went to my brothers for tea and didn’t get home until 8.30, by the time I’d showered him and got him sorted out it was 9.45 so I just gave him melatonin.

I need to cut his nails tonight and clean his ears out when he’s asleep so I’m hoping it knocks him out and I can get it all done in one night rather than a finger nail a night

He’s had the 5mg methylphenidate each dose today and he’s no different, he’s been angry / crying all afternoon over his iPad (I’ve turned safari off on the settings) because he’s started going on safari and typing things in then it’s bringing all sorts up, he’s writing covid, vaccine, needle, things like that in the search bar then all sorts keeps coming up, I caught him looking at loads of pictures of needles on the internet, he’s put needle because of the covid vaccine, but obviously you don’t just use needles for vaccines, so I didn’t want him looking at stuff like that in case it brings anything inappropriate up for him to see / read.

So all afternoon he’s been raging at me over disabling the safari. Feel like chucking his iPad out the window sometimes, causes so many horrible tantrums.

Oh dear danni. Great that he's writing so well but a bit worrying yes. It's a shame the increased dose hasn't made a difference yet, hopefully it still will in the coming days.

Ds has been fine today but a bit annoyed that he couldn't go out anywhere. Thankfully we're going out tomorrow morning. I did actually take him to some local woods for a walk this morning because he wouldn't have been going near anyone but he deemed it too cold when we got out of the car.

It was pictures of needles / flu vaccines going in peoples arms he was looking at, not crack dens or anything, just wanted to mention that i just know what google is like and what sorts of stuff it brings up when your searching so I’ve blocked safari before he sees anything he shouldn’t. If he doesn’t know how to type something he presses the microphone and speaks to it instead, he’s not daft!

He’s just had that Promethezine (it’s orange flavoured liquid) he knew it wasn’t melatonin and got really arsey but he’s swallowed it, so I’ll see how he goes with it.

It has been cold today open. Glad you had a walk, enjoy your trip out in the morning.

Ds is still awake 40 mins later. He’s not looking sleepy in the slightest.

Florisse what a horrible experience.

Danni I hope that he settled quickly. Fingers crossed with the new meds.

lizonions.files.wordpress.com/2019/09/180515_edaq-en.pdf

Just wanted to put the link of this demand avoidance questionnaire, for pda, it gives you the info to score it and interpret scores. Quite interesting.

Ds took 2.5 hours to go to sleep after those sleep meds last night, so not the wonder I’d hoped for, took longer to settle than on melatonin. I’ll keep trying!

Blimey @danni0509 thanks for that, DS is almost a full house on those questions!! Sorry sleep was still tricky. If it makes anyone feel more 'normal', DS is rarely asleep before 9.30pm and I have to stay with him until he drops off! I hear my NT friends chatting about watching TV while DC play quietly upstairs and it's so totally alien to me. Still, I tell myself I will miss these bedtimes when he's older! Going to try for a daddy bedtime tonight so I can indulge in a bit of strictly!!

danni what time did he wake up? I hope tonight is better.

Magrat one of us stays with ds until he's asleep too. We take it in turns but he goes through periods when he only wants me. He's usually asleep about 8:30 at the moment but it gets later every year or so.

Thanks for the checklist danni. Sorry about the sleep, hope it goes better tonight.

Thankfully ds likes being allowed to do his own thing in his room and often actively pushes us out so he can get on with playing with his stuff.
Sometimes though I'll go down to bed at 10pm and he'll still be up (even after melatonin) playing. Sometimes I think it's because he's made some super structure on his bed so he doesn't have anywhere to lie down and sometimes I think it's because he wants everyone to be in bed and asleep.
It's definitely better than the pre melatonin days where he'd be up destroying things until midnight!

He's still banging on about Christmas even after showing him the app. Maybe it's a new verbal stim for him.

@livpotter we have the Xmas thing too!! Trying to focus on Halloween first though! Just bought this magic mixes thing he wanted that he saw on TV...I said yes father Christmas will.bring it but then I checked and it was 70 quid!! I think santa might have to stop accepting new orders soon! No daddy bedtime for me tonight as DS just wanted me so catching up with strictly now!