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

Extra time probably didn't improve the mood but I hope the wine helped!

Great news on the transport and DH new job/your part time confirmation though.

I don't know what I would have done if I hadn't been part time this last month with all DS's nursery isolations. Absolute nightmare. As it was it was just a bit stressful but basically manageable. If I was full time I would have had a complete meltdown.

I'm a bit nervous about summer childcare. All it takes is one person to test positive or have to isolate and there goes at least a week's work (and it's clear there are going to be a lot of cases around). I think both the people I'm using are fully vaxxed, so that's something. Anyway, what can you do? That's just life now isn't it.

Argh I'm furious with DD's school.

She is currently in near enough full time and in class for the majority of the day.

LA agreed with me that she is better off doing an extra year there and moving at next key stage transition. School aren't happy.

School informed me Thursday that as of September she will be taught in isolation except for 15 break time time, 15 minute assembly and 30 minutes at lunch time. The other 5.5 hours in isolation.

I have spent the weekend writing my complaint and submitted it last night. I absolutely will take this to disability discrimination court level if needs be.

The head is a

Hello all, thank you for the welcome last week and sorry for taking so long to come back. Hope everyone is hanging on in there...DS's reception bubble has just gone down so its fun here. Plus 2 hours sleep last night. A whole 2. And now I'm trying to work and not sound drunk which is how I feel due to complete lack of sleep. Also debating a shout at the pharmacy about DS's new brand of melatonin that seemed to work as effectively as a smartie last night (though that may not be to blame for last night I suppose!).

Danni, I don't (and probably won't) post as much as you all do but I do love to read and relate to so much of what you all say. I'm a bit useless with technology (need the laptop open, not just my phone) but to answer what you asked me last week (sorry to hijack current flow of chat....)

DS is 6 (just gone). In reception. And no, no diagnosis of anything other than epilepsy (well controlled with meds) and most recently speech dyspraxia. That is, I'm sure, because I've not pushed for a diagnosis rather than he doesn't fit the bill (the bill seems so wide for ASD I don't see how he cannot). But that's maybe another thread...

So - pre verbal (my biggest sadness), sensory seeking, sociable, affectionate, tantrummy if doesn't get what he wants. Has failed really to master any other communication system. Just loves "hanging out" with us, can take or leave most things, hence no desperation to tell us he wants X. Poor fine motor (no interest in holding a pen so still at mark making stage - really no interest in drawing, or writing so its a losing battle). Will wee and poo on toilet if taken but really happy to do it in his pants if not. Terrible social understanding - just wants to do what he wants to do and doesn't understand social norms (I use the example of just picking up fruit in the supermarket and eating it because he fancies it at the time). Has to be watched like a hawk 24/7. Would happily just grab food off someone's plate when out in a cafe, that type of thing.

At home - not so bad though impossible to find him something to do because he is not remotely interested in anything other than following me around and dive bombing on the sofa. Sees toys (even the sensory ones) as no more than a bit of plastic. We go out a LOT because at least that's somewhere to go (which is why isolation is killing me at the moment). When he's focused he's shown he is very capable academically.

At school (MS) - they want him out. Say he is out of control, runs away, down corridors, won't sit down and listen. Sensory seeks all day, in sand, water, puts stuff in his mouth, flaps bits and pieces around. They have had enough of him and that is our current battle.

There are so many bits of your chats that apply to DS and so I read with interest!

Danni - your recent move for DS, his amazing abilities but his challenges for school. All the same for DS, in many ways. Oh and your cake eating. I can beat that, after hearing that DS's bubble went down last week I bought 15 massive morrisons cookies and have polished off most (aaaaargh). You only had 6 cakes Danni, that's more than fine :)

A few of you - sleep issues. DS last night, asleep at 9, up at 11. And that was it. I'm a zombie. And trying to work.

Magrat - I'm holding my breath for your DS at his new school! We have chatted on the PM and there are so many similarities with DS. Especially the school/sensory overload stuff - I'm so interested to see if the change in school works for him!

Liv - language development and play skills that you told me about for your DS. I'm so hoping for DS that will come (more than anything). He can tell me to f off a million times a day how I feel at the moment, I just want him to say something :(.

Magrat - bizarrely, your book club! Oooo would love to join one of those. Reading is my escapism. You may spur me on to join one.

Mumof....yeah, can say that about DS's head too.....

And the battles I know some of you have balancing your DC with an NT child. I have one of those too - a 9 year old DD. Who deserves a far better mum than the one she has.

Anyway, I'll stop hijacking - just wanted to say hello and keep talking (God that didn't sound right, I don't work for BT but you know what I mean :) :)). x

Another day, another school refusal...

Dh and I had a meeting today with the specialist teacher that we spoke to last week and one of her colleagues, to discuss in more detail the home side of ds' refusal and routines etc. I was a bit nervous because I thought they might be critical of some of the things that we do but they were lovely. It's put some clarity about what we are doing here and should do in the future which is mostly the same but will involving formalising a process and script for what we do this end to take the pressure off both us and ds. So we will have a script to use with him and a toolkit of the strategies that we are already using and we will try to get him ready in the morning. If he refuses then we try again in an hour and then another hour and then we will try again the next day. At the moment we are spending 45 mins to an hour to try and encourage him to get ready first thing. It sometimes works but usually doesn't and is frustrating all round.

They acknowledged that because ds wakes so early he has several hours to build up his anxiety around going to school which doesn't help the situation.

They have some suggestions for school too to help tighten things up that end and we discussed the potential move to the new school that is opening. If they seem to think it's a viable option then hopefully that means that it is. I don't know if either of them would be on the panel for making a decision.

I hope everyone is having a good day. Shame about the result last night

Whoops, I didn't see there was another page of posts.

Magrat bedtime is becoming a PITA for us too at the moment. Ds went to sleep about 8:35 last night so I missed most of the first half of the match.

Light glad the part time hours have helped a bit during this time. Hopefully your summer is not too disrupted. Are you taking any time off?

Mum how unpleasant of your dd's school - and that's supposed to be for a whole year? I hope you get somewhere with your complaint. Make sure you send it to the governors.

Carrie I'm glad our chat helps a bit, post as little or as much as you want. Have you started to look at any other options for school? Have you looked at a sensory diet for home?

Yeah the impact on other child is a major source of guilt/worry here. DS is screaming so much at the moment and often directs it at DD who then cries hysterically which DS hates and screams even more. I remember when I did the sensory smart parenting course it indicated that I was particularly sensitive on the auditory side so this is not a good combination.

MumofSend that is appalling. Have you spoken to the LA?

Magrat so sorry about the sleep problems. I don't know how you and the rest of you with problem sleepers cope. I do wish that our days could start a bit later than 04:30/5.

Open fingers crossed that the new school placement can go ahead. I really feel for you.

DS is all over the place as his 1:1 is self isolating and he has different people supporting him every day.

Carrie bad luck with the self isolating. We need to go out a lot too so feel your pain.

I agree Light no way I could work FT. I have just reduced my hours again so now doing 3 days a week over 4 days. I had to beg and in the end was just really blunt. I'm feeling overwhelmed with DS's needs if work pressures increase too (I have been doing 0.6 on phased return using accrued leave) then it'll push me over the edge.

Open, yes we are looking at schools. Stupidly nervous about a full move from MS even though I hate the place. Looking at dual placements/ units at the moment. But worried that DS may be too challenging for some of the speech units. Can’t face doing this all over….

For those with DCs with sensory issues, do they have a sensory diet that has worked? We have paid DS’s OT over the years ££££££ and she has supposedly put together a sensory diet for school that supposedly involves DS doing whatever then something else then on to work. Well he’s done her first bit (jumping, running etc) but it’s not made one iota of difference to his behaviour thereafter. Still impulsive, still sensory seeking.

Day off tomorrow, in with DS all bloody day. He has a heap of bthday toys but won’t play with one. Anyone else?? I get on the floor with my most animated play skills and he actually cries like I’m forcing him to do something terrible. DD will play with her dolls forever. DS favourite thing at the mo is to balance on the edge of the arm of the sofa on his knees literally teetering, grabbing the door, steadying himself etc. He can do this for ages, that feeling of will I fall, won’t I… it’s going to be a long day.

We have lots of playdo, kinetic sand, jigsaws, board games, they get played with more than traditional toys. Lego, too, but free flow play. I find @carriebradshawwithlessshoes that the more DS has sensory play, the better he deals with sensory seeking. We've got chewelry as well and fidget toys and those new pop mat things. If DS starts chewing something, I just wordlessly switch it for the chewelry, as if I say anything it's taken as a demand and that doesn't end well! Ooh and he loves his stopwatch and calendars now. We definitely have phases of certain things being more popular so I just roll with it, trying to.push my own play agenda goes down like a lead balloon!

They do a sensory diet at school apparently. I'm tempted to buy a trampoline for his bday.

Thanks Magrat, I’d go with any of that, he’s just so not interested. Lego just gets banged on the table or flung. If your DS chews do you not find he mouths the dough and sand? The number of calls I’ve had from school to say DS has nearly choked to death on playdough he now has to have 2.1 when it comes out. He’s no patience for board games, I doubt understands them. Ditto jigsaws. I got him one of the pop things, he did it once then it got discarded. There is literally nothing that keeps his attention other than a numberblocks/ alphablocks dvd. And stuff like the sofa balancing. He’s really hard work because there is literally nothing he will do himself that I can leave him with (and he won’t play with me either).

Sorry about DS sleep… I know you get no evening but I nowadays really try and keep him up til some ungodly hour 10/10.30 as I do find there’s less chance of him getting up in the night. 8.30 bedtimes just seem to bring on midnight wake ups….

What about a wobble board? Exercise and he gets the proprioception input? Or aquadoodle? Chalking on the patio? We have a mud kitchen that gets used a lot. Numberblocks is good here too! One of DS' fave toys are those plastic mathlink cubes, he makes Numberblocks characters out of them and acts out stories that way. Or what about torches, light up boards, or magic wands that light up? Also don't feel bad about screen time!

Ds loves numberblocks too.

One of the best things we got for ds was a gorrilla gym. It was expensive but totally worth it. You also need the right kind of door frames. Swinging seems to be the most calming activity for ds. We also have this big bucket thing that he can spin around in which is meant for toddlers but him and dd still use it.

So ds's school got flooded in the storm last night. Apparently there is a lot of damage so not sure when he will be going back in!

Oh gosh liv… it’s crazy weather certainly up here!! I was piling on the sun cream 2 days ago now it’s floods here too (north York’s).

Thanks for the suggestions. Do you think anyone can do anything to bring about play skills?? (If that’s the right word). So DS really won’t do much involving fine motor. I often think if I really encouraged him each day to do something he didn’t enjoy now but was really good for fine motor would this skill improve enough for him then to enjoy it?? Rather than leaving him to watch numberblocks and not improve fine motor if that makes sense?

Like, DD hated her bike. Couldn’t balance. Cried and protested. We had lots of pain before the gain but once it clicked she loved it.

We did have a play therapist once but she was bonkers, very deep and meaningful. Just wanted to talk about our marriage and did we really want DS?? DH was involved in first meeting but shot off after 10 mins under the guise of a ‘very important meeting’….

Hope it’s a good day for all. DS in bed at 10 but only just up. Crazy how if he had gone at 8 I’m sure he would have been up…

I don't think I could make DS interested in something but eg a good fine motor activity with sensory could be to get dinosaurs out of ice? Sorry, cat has just been sick so have to go :/

Magrat!! 😬😬😬🤢🤢🤢🤣🤣🤣

Another numberblocks fan here. @carriebradshawwithlessshoes the people at nrich (maths educational charity) talk about benefits of using BIG things to do maths in early years. E.g. instead of moving fiddly things make a pile of sofa cushions and count those. See how many wheelbarrow loads it takes to move earth from a to b. Balance a mattress and see when it falls over. That sort of thing. Just possibly might appeal?

Also, just in case you haven’t seen these:

5minutefunshop.co.uk/collections/numberblocks

And I always recommend cuisinaire rods.

Carrie I think the best recommended approach for improving play skills is a floortime / intensive interaction approach. I don't know if you've read about these but definitely worth doing so if you haven't already. You need to start micro small and build slowly rather than expecting too much too soon. Even five to ten minutes might be too much to start with. The same with fine motor activities. Try getting him to so something tiny for a while and then build. You need to start with things that he's already interested in rather than trying to get him interested in something you want him to be interested in even though it's really tempting.

The out of sync child has fun has lots of sensory ideas for each type of sense. There's a book called Understanding your child's sensory signals which is great for looking at a specific behaviour and then it tells you what input they are seeking or avoiding with alternatives you can direct them to where necessary. The recommendation is that if it's not hurting them or others then perhaps just let them do it.

liv it never rains... I feel for you.

Ds not in again today. I can't wait until the end of next week, they break up on Thursday. I managed to get him to do a few bits of work again in exchange for half an hour of TV time. He grumbled more about this than yesterday though.

Ooo lots to look at there thank you! X

Oh liv! If it were ds school I’d be down there with a mop and bucket helping them get it open again 😂 jokes aside, I hope they can manage to sort it out soon, I see those storms on the news this morning. Hopefully he’ll get some time in before they break up. Fingers crossed. One disruption after another.

Open, sorry ds didn’t go in again, ds came home at lunch, I did 10 minutes maths with his whiteboard and pieces of Lego, adding / subtracting, he was being awful screaming at me, throwing the Lego and white board trying to bite the nib off the whiteboard pen, I felt like binning the bloody lot. Don’t know why I bother most of the time.

They have booked his annual review for September, they have given me a date and time and says it’s unable to be changed. (Wtf, if I need it changed I bloody well will when I have to attend it, dictating to me without checking with me first, I could have a date with Ronaldo or anything!) the time they have given is 11.30am, he is home from his taxi at 12.20.

So I had to email back a list of professionals involved in his care that they requested and on the bottom of the email I wrote I can join at 11.30 (it’s online) that’s no problem, but you have literally got me until 12.20, once his taxi pulls up I’m off. If it’s a problem take it up with school who send him home 3 hours early every day. Blunt and to the point. I haven’t had a reply…

His other annual reviews have taken longer than 50 minutes.

Bedtime messing around is in full swing here. Ffs. Fed up with it. I think I need to speak to the doctor about melatonin again. Even if it doesn’t keep him asleep it will probably help with this crap.

He’s so tired, was out walking and in the park for two hours this afternoon. He fights it all the way.

We had an awful day here too open. Many meltdowns ans a lot of violence. Some days just suck! Thankfully school will be reopening tomorrow