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

I don't know why OT provision is so stretched in this country (though I think I did look into how you could become an OT and it is really hard and takes a long time so maybe that's why!)

Part of DD's original assessments back when she was 3 or so was OT. I remember it seeming weird at the time as I had no idea what it was - I thought it was something to do with injuries at work! Anyway, we got a short report saying basically she couldn't do any of the age appropriate things (getting lids off things, using hands together, squashing play doh, whatever) but at the same time was nowhere near the threshold to get actual OT support. So that was helpful! I suspect it did play into her Dx though so I suppose that's something. She seems OK now though I do notice that she struggles more with buttons and packets of crisps and stuff than other kids, and her handwriting is not great (but that could also be her hypermobility). Anyway, none of it seems to be causing her a big problem, so I'm not saying that she should have had OT - but I know a lot of parents of autistic kids by now and I don't think I know a single one who has had actual NHS OT support. It just seems to be incredibly rare and hard to get hold of. I really hope you can get somewhere though @danni0509 as it seems clear that some sensory supports would help DS a lot - though I'm sure you're doing a lot of it already through all your reading and research!

I had to Google that Navigate service @dimples76 but it looks great, I think I would have benefitted so much from that in the year between getting told DD was almost certainly autistic and actually getting her Dx. I found that so hard and there was no support before pre-Dx and I was always second-guessing myself. Having an experienced ear to listen and reassure would have been really good.

danni in your situation I’d have no qualms taking ds anywhere. In our situation it feels like taking him out when he should be at school is rewarding and encouraging him not being at school. That’s likely what the professionals and teachers are likely to think anyway. The reality is that yesterday he wouldn’t even go in for an hour with the promise of going to Tesco to buy a toy afterwards, so it must be bad. Staying at home is not encouraging him either.

dimples I agree. It’s not that I’d take him out all over, every day, but I think that there are things we could do that would be beneficial, like a museum (if I was feeling brave) or even just going for a walk or swimming in the afternoon.

One of the main issues appears to be his low confidence in his academic ability and I feel we need to work on this and different opportunities to learn would be beneficial during this time.

The Zoom thing is about ‘protecting’ the staff. They always had an extra adult on the class Zooms during lockdown. I am going to challenge that next week. I will not have his TA’s just helping out the rest of the class as they have been all this time. We’re all grown-ups for goodness sake. If anything bothers them then they are free to raise the issue.

Oh I see what you mean now open regarding not wanting to reward him by taking him out when he should be at school, didn’t think of it from that angle.

The TA situation is such a cop out excuse, protecting themselves from what exactly? It’s not like they are changing him / giving him personal care, it’s also the same / similar as them taking him off at school and doing 1-1 work with no one else present.

They are the only ones winning here, ds being at home and they have his funded staff all day to do whatever they please with. I know you like / get on with his school etc but I hope a solution can be found because it’s not fair on you / ds at all. Even if they could do some sort of well anything then it’s better than what they are doing now. Hope you can hear from the new school soon.

I’ve just had to take ds to Tesco for an emergency trip (Dh is working and I’ve run out of stuff I need) it’s what my nightmares are made of taking him in a shop, I said he could scan the bits with one of those handheld things and get a box of cookie mix to make this afternoon to tempt him into behaving whilst I grab and dashed, anyway he ended up having a tantrum of epic proportions because his coat and shoes didn’t scan. Just does not understand what I’m trying to explain to him. I ended up weighing an onion printed the barcode sticker off and stuck it to his coat so he could scan it 🤣

Home now, thank god.

Very good improvising danni!

Protection from accusations of x, y or z I suppose. I have already emailed the SENco and asked for a meeting with her and the head teacher to discuss the next few weeks. He didn’t go in yesterday either and we didn’t hear from his teacher or a TA.

Good luck to all going back - Danni, hope DS goes on Ok today.

Open, have school given any guidance on what you should do when DS is at home with you, do they send work home if he isn't in school? I hope the new school works out - have the current one given any suggestions on the situation generally or do they just say keep him off if he doesn't want to come in? You would think (but I'm no expert) that they would have thoughts and strategies to try and ease him back in but I know from my experience with DS that school just state the problem/fact and then there is no suggestion as to what to do about it. In terms of what you do in the day, I agree I would use your judgment - learning is so much more than just being at a desk or academic learning. Do what you think benefits DS - its not a reward for not going into school, its just taking learning into a different environment, whatever shape that takes. Its all positive, all development, all learning.

Less than 24 hours to go before DS returns to the hell school and I'm hyperventilating. Honestly I don't think I've ever been in this state before. A couple of medical things that I've only been plagued with in times of extreme stress have flared up. I don't know how I am going to take him back tomorrow without being in floods of tears.

I need help on one thing - one of the MANY things school criticize about DS is the toileting situation. I've written about this before - he will go (usually) if you take him but he really doesn't care if he's wet/dirty and will stay like that all day left to his own devices. He's always gone to school in pants and every day we have between 2 and 8 wet or dirty pants sent home in his school bag. It actually fills me with dread when I pick him up, I'm feeling in his bag before I've even put it in the boot of the car how many are in there.

Anyway, the awful Head made lots of negative comments about this (and other things) in the last conversation and I'm now (having just had to strip him off this morning as he had his breakfast then ran into the lounge and pood 5 mins after I had sat him on the toilet) thinking I can't cope with this any more, do I just send him in a pull up tomorrow? What do you think?

I am beside myself with it generally (have written about this on MN before so sorry I'm repeating). Its like he either doesn't care or doesn't know he is going. I do occasionally catch him sort of freeze and I then shout "toilet!" and sometimes we catch it, sometimes we don't, but if not watched so closely he will just go in his pants and then carry on as normal. He really doesn't care/notice.

I have told him/bribed him/shouted at him (yes I know I shouldn't shout) SO many times. He just looks at his wet/dirty pants, totally unconcerned, then laughs. Then does it again. Stupid as I am, I thought school may say "Ah, don't worry Mrs Bradshaw, we have seen this before we do X!" and then X many just work. But they don't - they just take him regularly (as I do) which doesn't make a fig of difference.

So pull ups or not??

From what you’re saying - pull ups. Either he isn’t bothered in which case pull ups won’t bother him either and it’s less hassle for everyone. Or he is bothered and can’t/won’t admit it, in which case pull-ups might help?

He isn’t bothered at all.

I just feel it’s a step back but appreciate I’m not thinking logically at the moment …

I’ve asked this before so know I’m repeating but what do you do with a child that just isn’t bothered?? Rewards etc just don’t work. How long can you go on just changing pants all day, showing them to your DC, DC laughing at it then doing it all again?

It is a tricky position, but, look - you’ve tried. It isn’t working. It could magically click tomorrow, but there’s no particular reason to think it will. Give yourself a break.

Carrie we took ds daytime nappies away April 2019 - 27 months ago and we still have to take him to the toilet, he very very rarely initiates himself (maybe once every 2/3months he says he needs a wee) he will just pee / Pooh his pants and isn’t at all bothered if he’s wet / dirty.

I take him roughly every 2 hours or before we leave the house if going out, he still wears pull ups for bed.

It’s a looooong ongoing process here.

And you don’t know he’s not bothered. He could be bothered but just not have the interoception to plan for a poo or the social skills to explain that. Either way, I vote for option that sees you spending less time cleaning soiled clothing because man that is a downer.

Ds apparently had been crying all morning at school saying he misses me, he got out the taxi all snotty nosed and red eyed, I said awww what’s a matter ds? And he started again, keeps asking me why I left him for so long. Bless him.

Aw Danni, that’s so sweet! Hope you are giving him a big hug and a biscuit!!

Point taken Orino.. if he doesn’t have the interception is there anything I can do or is it just finger crossing and hoping for the best?? Sorry won’t detail this thread anymore talking about poo!

Hope all our DCs have had a good one! X

An OT might be able to help?

I was going to suggest OT too.

And that is adorable Danni.

He’s had OT weekly for 4 years… she knows this is a big issue and has never said it’s anything she can help with!!!

Carrie I definitely would put him back in pull ups. Without meaning to be depressing it doesn't sound like he's really progressing so it's not really a backwards step. My DS who is 8 has accidents every day or 2 and is in pull ups at night. We had an appointment with the continence team earlier in the Summer. It might be worth asking GP for OT and continence team.

Danni hope that your DS is enjoying his reunion with you.

I was enjoying playing with DS on the way home and then he slapped me across the face. I guess it's probably similar for a lot of you that even when things are going well I am often on edge as in a blink of an eye everything is wrong.

Carrie maybe your OT isn't fully trained on sensory issues? I don't know if all are. This is just a random selection from a search:
sensoryhealth.org/node/1073#:~:text=A%20child%20with%20toileting%20issues%20may%20actually%20be,the%20bathroom%2C%20feeling%20hot%20or%20cold%2C%20and%20fatigue.

I don't know what the exercises are to work on interoception but it would be worth Googling. I don't have any personal experience as we have been very lucky with toileting so far, but I understand it must be terribly frustrating.

danni did they say how he was otherwise? Very sweet he was missing you, I bet you missed him a lot less!

Ds went in to school for an hour this afternoon. It sounds like it was very positive but I will not get my hopes up. We Zoomed with the Senco and TA this morning and I told them that I was going to take him out in the afternoons and that it was in neither of our interests to be stuck at home until 3:15 every day.

dimples ouch re. the slap. I hope he's ok since you got home.

Yvonne Newbold is running a webinar on Thursday about supporting a demand avoidant child if anyone is interested. She’s on Instagram now.

Hi all! Popping on to say hi! DS started his new school last Friday so we are getting used to that and the transport etc. He likes how his timetable is very broken down (10 or 20 min chunks) and lots of sensory play, games, outdoor play etc. They went on trampolines today apparently! It's been nice so far to have communication from school that is positive. @danni0509 that was very sweet of your DS!
@carriebradshawwithlessshoes do you think some of it is deliberate to see your reaction? We have phases of this. Its like a power game I think that is part of a demand avoidant profile. The way that I learned to deal with it is pretend it's an accident and not make too much fuss! Sounds counter intuitive but there you go.

Thanks all, Open that’s a useful link.

Dimples, was he upset or did he just think it was part of the game? I often find with Ds that he does things as part of our interaction that he doesn’t realise hurts or is inappropriate. I remember him seeing a Dr once and Ds pinching him really hard, the Dr said it’s just part of him interacting, he doesn’t mean to hurt (also sensory issues at play).

Magrat glad all is going well I’ve been thinking about you! I think for Ds a lot of it is he doesn’t see the point and doesn’t understand the social norm. That applies to a lot of what he does. Why sit in a class if you can run around? Why go to the toilet if you can just go in your pants and it doesn’t bother you? If you are in a shop and you are hungry and there is food on the shelf why not just help yourself? I don’t feel he really grasps the concept of because that is not what we do etc. Also recognising you need the toilet and then communicating to an adult that you do or going yourself (bearing in mind he is not verbal) is effort and executive planning which is tough when you really don’t mind being wet or dirty.

Toilet wise tho it’s an odd one, like danni saying she takes Ds every 2 hours. Yesterday I took Ds out we had coffee. He then had a massive wee in the cafe, fully emptied his bladder (I’ve even had him scanned at the hospital to check he is doing so and he is). We immediately drove home, 15 mins drive. By time we got home he had wet himself! I mean how is that ffs??!!!!

To clarify the cafe toilet, not the cafe itself!! 🤣🤣🤣🤣

Open I’d booked 2 of yvonnes webinars last week, I forgot to mention it here, they were £4 each. I can’t do them at the times they are (8-10pm) as ds pisses around every night and Dh does days and night shifts so can’t help me on those dates so I can do the evening but you get a link to rewatch for 1 month so i booked them and I’m going to watch them when ds is in school so I can sit peacefully with my notepad and pen! I bought yvonnes special needs handbook about a year ago and nothing in that helped us (unfortunately) but I’m happy to watch the webinars and see.

How’s ds been? Have you managed to get him into school this week?

Carrie it took ds a good 18 months of training before his bladder could cope with waiting the 2 hours between trips. He still wets now but nothing like what he used too. He’s nowhere near perfect and not yet independently trained but he’s lots better than before. It’s such a long process for some kids. We are still here over 2 years later. But with some progress.

Ds came home today and the taxi driver said do not give him an apple he never wants an apple again, I was like erm ok, why? Ds said he run away at the school orchard today didn’t listen to his teacher and picked a mouldy apple up and took a bite and it had maggots in it. 🤮

He also said xxxxx (the child I told you about hitting him before) threw an instrument at him (he was extremely specific so 100% believe him) I said what instrument ds and he said a drum and he said the teachers had to be drag her off ds……

I wonder why said child isn’t on part days? Ds is for his behaviour and to be honest he doesn’t regularly need dragging off other children.