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

[MrsDuBeke]

Hi @danni0509 thanks for the new thread!

[openupmyeagereyes]

Thanks for the new thread danni.

[openupmyeagereyes]

Great news you’re getting a vaccine soon. Of course we have not yet applied for DLA so it won’t apply to us 🙄 hopefully I still have some immunity.

Ds has settled back to 4ish the last couple of days. Sad to say I’m getting used to it now though my turn to stay in bed tomorrow while dh gets up.

We’ve had a pretty good day today, ds even did some drawing which he normally dislikes. The warmer weather also meant he stayed in the garden a bit longer too.

[dimples76]

Thanks for the new thread Danni

Difficult day here. DS still being aggressive towards DD, major toileting regression and general pain in the arse today. I was so glad to get DD to bed so that I didn't have to be so vigilant.

Open I don't think that you need DLA to be in group 6. GPs told me that I needed to contact my LA's carers team to get a form. I told them about DS (didn't mention that he got DLA and strangely they didn't ask for any evidence) and they sent me the form. My sister (same LA but different GPs) did the same as me and is getting her first vaccination on Thursday.

[openupmyeagereyes]

dimples thanks for that, I’ll look into it.

Sorry ds is still having difficulties, what do the adoption team say? It must be quite common? I hope you can get a breakthrough soon.

Ds got up at 11:30 last night and ran downstairs. Thankfully I managed to persuade him to go back up after half an hour or so and he was asleep an hour later. It’s easier when he wakes early (which is quite rare), if it’s 1am or later then there’s almost no chance. I’d given him some melatonin downstairs and he still woke at 5am.

[danni0509]

Open he sounds so similar to ds in that if ds wakes before 1am I can ‘usually’ get him back to sleep (takes a while) but if it’s after that then we have no chance! Isn’t it really strange most autistic children have issues with sleep / night wakings.

Dimples, sorry ds is still hitting dd, I know for a fact if I had other children ds would be exactly the same! I don’t even take him to the park anymore as he purposely whacks whoever is next to him, he even goes for the just walking 1 year olds, he’s not fussy! He gets some kind of buzz from doing it, drives me mad and does make me really worry for his future.. it’s getting worse not better!

I worry specifically about his new school as I’m almost certain on the consult forms the LA wouldn’t of told them about any of this (and it’s regularly documented) they apparently leave those kind of bits out so they don’t scare the school off! But on the new school website it says they have zero tolerance for violence 🙈

There are children with feeding tubes / other tubes that I’m not sure what they are for, I’ve seen the pictures on the school website, ds would have a field day pulling all those out! 😩

[danni0509]

If a child is hitting then most people (professionals I mostly find, the EP especially) say it’s because they aren’t having their needs met (which is what I read a lot of the time, not disagreeing as such, but also not completely agreeing that it’s true in all circumstances as I don’t think it is right to say that about every child) if it were true then i can’t be meeting ds needs AT ALL because he’s worse for hitting now than he ever has been.

Friday his 1-1 wouldn’t let him outside, he’d been out and now was time for work time, he’d had adequate warnings / countdowns, but because they wouldn’t open the door he launched an attack and started kicking her, they said he didn’t cope with the transition, but as ds mum I just said it’s because he didn’t get his own way! He’s spoilt! She smiled when I said it because they realise too sometimes it might well be transitions, but I can bet it’s more to do with the fact he’s not having his arse kissed and being allowed to do what the hell he wants.

If ds doesn’t get his own way ALL of the time he’s absolutely murder! He cannot bare the word NO, I try not use it now I say other words which mean no but he’s now cottoned they mean no so any word I use now which means no he knows and goes beserk.

Yesterday we made pancakes, I know it’s today, but im greedy, he likes to watch me toss them, he doesn’t eat them he licks the Nutella off his, he said can I flip it I said mummy will do it ds the pans really hot, he started going MAD I was saying you’ll get burnt ds, he was saying I like to get burnt let me get burnt I want to flip it I want to get burnt 😳 I put it on a plastic plate and said flip it on this, showed him how but he wanted the hot pan. It was a right shit show, I put my pancake in the bin in the end he’d put me off!

He literally doesn’t give in until he gets what he wants even if it means he’ll burn himself.

Thankfully he’s being more pleasant today which is fortunate for him as I was ready for putting him in the wheelie bin for the bin men this morning! 😂

for all

[danni0509]

To be fair to him, he doesn’t know what burnt means, he’s never been burnt so he won’t link that in his mind with pain iyswim.

Still not letting him off the hook though 😂

[LightTripper]

It's one of the things I've found hardest: you are parenting a child with unique needs that need to be met and accommodated, but you are also parenting a child who is at heart just a child and will push boundaries and try to get their way like any other child. So figuring out the difference between "wants" and genuine "needs" becomes really critical and is not at all easy! I actually have no idea how you are supposed to do it so this is not a useful statement at all, just an observation ...!!

Thanks for the new thread though! Thread 6!!!! We've come a long way since Thread 1!

Sorry to hear DS is still struggling dimples. Really hope he settles soon. I can't remember, is he in school?

And everything crossed for some decent sleep soon open!

The good weather yesterday was so so so needed. Even if unwinding this lockdown is slow, more sunny days when we can all get out will make the world of difference! We have booked the morning off on Thursday so that our cleaner can come while we are out (we have been cleaning during this lockdown but neither of us are very good at it, so the house has still acquired a gentle air of grime ... not helped by the fact that I have been going through old papers trying to throw stuff away, so there is even more dust than usual....) Of course the forecast is now pretty crappy but never mind. We'll just go and find some woods so we can stand in anoraks under a tree (EXCITEMENT!!) But genuinely, the excitement of coming home to a properly clean house. I'm already looking forward to it. Am I weird?

[livpotter]

Not at all light! I am desperate to get some cleaners in. Both me and dh are rubbish at keeping things clean and tidy and the kids are like a neutron bomb!

Sorry that is difficult dimples.

Thanks for starting the new threat danni, can't believe we're on no.6.

Hope you're getting a bit more sleep open.

We're on half term here (as if it makes a difference!). The kids have refused to leave the house for three days, so I think we're all going a bit nuts here.

[danni0509]

I know light, thread 6! Crazy.

I remember first posting when ds was at nursery.

My sister sent me a photo yesterday of ds propped up on my sofa when he was 2 weeks old, I can remember taking that photo and sending it to her like yesterday and here we are 7 years on.

Liv we are on half term too, he goes back next Monday. Do you mind me asking a few questions? as your the only other mum on this thread with a dc in special school so far.

How many does your ds have in his class? And how many staff? I’m not sure how many in dc class or even what the staff ratio is, but whether they are all really well trained or not ds still needs 1-1, I think they will soon realise this, I can warn them but I’m sure they’ll make their own judgments fairly fast, I’m not just talking for his behaviour (which I know they assume will improve with smaller classes, less demands placed on them etc) but I’m talking shoving things in his mouth trying to break everything and his constant need to make adults hearts stop in their chests! I’m not sure how he’ll survive without someone with him at all times.

All I know so far is there are only 80 children in the whole school and that’s from age 2-19. So I expect the staff ratio will be more than adequate.

They also don’t call the teachers Mr or Mrs, it’s first names. It seems so different to ordinary school.

I’m also struggling to see how my ds will fit in, although I hope I’m wrong, but the website and the researching I’ve done seems to tell me a lot of the children are non verbal (bless them) but ds is extremely verbal.

My other worry is it says on the website most of our children are working at p5 or below, well ds is p7/p8 in everything now and just on to the national curriculum for his reading.

I hope I don’t sound an arsehole it’s not my intention, just things I keep thinking of like is this the right school for him (I honestly don’t think it is, but we had no other options) I know he didn’t fit in at all at mainstream hence the move but I’m moving him so he fits in if that makes sense.

I’m looking at it this way for now though, that might as he gets older be good for his self esteem (he wouldn’t realise now) but it might do him good once he becomes aware if he’s one of the more capable pupils (?)

Still not sure how I feel about it all, could be the best mistake I made or the very worst, suppose only time will tell.

And at any point, I can request to move him, which will take years 😂 but I’ve got the option there.

[danni0509]

Anyway! I wasn’t meaning to sound judgey and I meant no harm when I said the other children are non verbal.

I hope ds being verbal can help the other children in some way, I just meant I want ds to learn from others too and if it’s not with his speech, I’m sure it will be in other subjects / socially.

I thought they put them into classes of similar children, just not sure how it will work yet.

This new school have made zero contact with me yet so I can’t ask any questions.

[danni0509]

A lot of them are autistic at this school though so I’m sure they’ll all be similar and if you remember when we went to view the special school before the little boy said to ds what’s your name? and ds said meoowwww! and the little boy said hello meowwww I’m Isaac. Hahaha!

That little boy was completely on ds wavelength, with how literal he was if nothing else!

[LightTripper]

Definitely worth a try I would have thought @danni0509! I only have indirect experience but my cousin's daughter has a chromosonal microdeletion which presents a bit like autism (she is a very sweet kid but has no filter or concept of personal space, so would struggle in mainstream). I know in her special school they have a massive range of conditions. For example, most of the kids have physical disabilities, which she doesn't.

Anyway, they have found she's still done really well there despite all the kids having such different needs. In that kind of place they tend to be really good at differentiating the teaching so that all the kids can progress. Definitely worth keeping an eye out for, but try not to worry too much. Once you get your definite start date hopefully you'll have some proper contact points where you can ask how it works and start to get DS prepared. Do they have any kind of visit so that DS could see it with you before he goes? I guess everything is hard with Covid....

[livpotter]

Danni ds has 6 pupils per class, one teacher and 1-2 support staff. All trained in special needs.
The rooms are very clear, they only have what they are working on out. So less likely to destroy/eat things. All the doors are on fob keys so even if ds did manage to escape the class he wouldn't get very far.
In terms of learning because the class sizes are so small they can tailor it a bit, but mainly they put similar children in each class. The classes are based on similarities over age groups. In the secondary school they have two wings, one for more academic/high functioning kid and one for less academic/lower functioning kids.
Ds has some non verbal kids in his class but I think they all manage to get along quite well. He seems to have made friends!

[Mumofsend]

Ooh new thread.

Trying to fill in DD's early review paperwork. Review is 31st March , school are saying they can no longer meet need. I agree. Now will the LA...

Mid big complaint with social care because well they are shockingly awful.

DS is showing zero ability toileting and the judges thread in AIBU has made me really paranoid for September!

I am TIRED.

[danni0509]

Don’t be paranoid mum.

Your ds has additional needs, I just read the thread briefly (I won’t comment, I end up arguing with strangers 😂 ) and I think pretty much it was the non sen children that were the ‘problem’.

Not that that has anything to do with any of them anyway. I do hope their perfect little darlings do a huge shit somewhere hard to find on a hot summers day though

Hats off to tibtom I think the poster was called, every page sticking up for disability rights!

Your ds will get there. Ds wore nappies to school for most of reception, and even his school changed him and have never made an issue out of it. It’s been a long process for ds with toilet training and still work in process and he’s seven now.

My best friends little lad is 5 in March and only last week she was shouting as he’d Pooh’d his pants whilst she was on the phone. He has no SN at all.

[danni0509]

Thanks liv, I’m so pleased your ds has made some friends, I hope ds is the same, he doesn’t have any at the minute bless him x

[MrsDuBeke]

That sounds so perfect @livpotter I'm trying so hard to get DS into a similar school but it's so hard! I'm so worried about when all the other kids return in March and the effect on DS.
@danni0509 it's so hard to know the right decision to make isn't it? I think it all sounds good for your DS and his new placement, we just have to try things and see I think, but it worries me too about decision making etc.
@Mumofsend I don't read aibu anymore as it winds me up so much! To be fair, I probably wouldn't understand if I didn't have a child with additional needs. Hugs.
@LightTripper and @dimples76 isn't it so hard to tell when DC with sen are genuinely upset or when they're just being kids and pushing it?! My DS has pda too we think so any demand can be taken the wrong way but he can't help his anxiety. Sometimes he does stuff just to see if I'll tell him off though (which he's honest about!), which i hate but have to calmly explain why we don't do that or why it's not a good idea etc. Or just ignore it!
We have had lovely pancakes today, covered in fruit as well as Nutella, and went for a eoodland walk so I'm going to chalk it up to a win!

[livpotter]

I feel very lucky to have got him in there mrsdubeke. It only opened last September so it's not full yet which definitely helped.

[Mumofsend]

I think I found a perfect provision for DD. Our AR is 31st March, panel two weeks later and then can consult. The provision only has one place left but it is literally the only place that could work. Going to be a stressful few weeks!

[dimples76]

MumofSend fingers crossed on that school place.

Light I am so jealous of you getting the house cleaned. My house feels like a disaster zone, I now have problems with the brickwork and have a builder coming out tomorrow to quote. This is when I loathe being single - wish I didn't have to deal with it all.

Danni I think that you are doing the right thing. As you say the options are v limited but it sounds like new school will keep him safe and included so will be a massive improvement.

We have had a better day here. We went to a park and had it all to ourselves. DS has been on much better form.

Yesterday I got upset at my Mum's house about money and cried in front of my niece (she is 8 and autistic). Today she asked my sister if she could get paid for chores so that she could give me money to get the house fixed. I was so touched but also felt guilty that she had been worried about me.

[MrsDuBeke]

@Mumofsend crossing fingers! We found a great school, wrote a letter to support our choice, but apparently they are full etc. It's so maddening as la don't have waiting lists so how are we meant to get a place? They will consult apparently but we have heard nothing in months.

[LightTripper]

I know I am very lucky @dimples76. I'm hoping today stays quiet at work so I can madly tidy ... need our cleaner to be able to reach the dust through all the piles of stuff!

Still, got a lot more old paperwork out yesterday and trucking on. Getting there! It's OH's birthday at the weekend and DS's next week so there will be more stuff inbound soon - makes me weep to think about it!!

[danni0509]

I’ve been thinking of starting a little cleaning business once ds has settled into his new school come September.

Not sure yet, as I don’t have child care for half terms, dh works alternate shifts in some weird pattern with a mixture of days and nights so he’s no use to me, and we don’t have anyone else to help us out and professional childcare for ds would cost more than i earnt, so might have to clean and say I have a child with additional needs so I’m term time only and let people know from the start. Would that put any of you off?

Anyway just one of my ideas I’ve been thinking about for a while.

Ds has been awake since 1.15am open and hasn’t been back to sleep, I laid in bed snoozing and give him the iPad next to me in the end as I was so tired. Didn’t work out he just kept shouting in my face, I’m not very happy this morning.