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Primary School Auties 10: Summer and beyond 2022

1000 replies

LightTripper · 19/07/2022 10:58

Thread 10.

Ooops, sorry, filled up the last thread without noticing - here we are at THREAD 10!! (How did that happen?)

This is a thread for the parents & carers of children with additional needs. Most of us have autistic/ADHD children in primary school, but anybody is welcome to join us to chat x

Links to previous threads below.

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
Thread 7
www.mumsnet.com/Talk/special_needs/4303826-Primary-school-auties-summer-and-the-new-academic-year-thread-7
Thread 8
www.mumsnet.com/Talk/special_needs/4422100-Primary-school-auties-step-into-Christmas-and-the-New-Year-thread-8
Thread 9
www.mumsnet.com/talk/special_needs/4502988-Primary-school-auties-thread-9-spring-summer-2022

OP posts:
carriebradshawwithlessshoes · 26/10/2022 16:12

Just because they haven’t told me they are Open… and because I can’t see any improvements. They do seem to tell me everything so would have thought they would have said something like oh, we find attention autism really helps with this, we are doing this with DS, we are monitoring his progress etc. but nothing.

aw, the weather is lovely at the mo, if he’s happy in the garden grab a coffee and make the most. I’m only walking cos he would be trying to eat everything he can get his hands on and so forth in the garden. Plus it wears him out (a little…)

openupmyeagereyes · 26/10/2022 19:12

carrie I wouldn’t assume they aren’t. I would expect it to be baked into their approach, he can’t be the only child with attention issues even if his are more extreme. You can always ask them directly though and ask for techniques to use at home, if you haven’t already. Or ask what their plan is, I suppose.

I can barely get ds out in the garden so not much chance to relax with a coffee. I’m generally called back in to play, fix something in his game, etc. If I told him we were going to the shop to buy a toy though, he’d be ready in a flash.

dimples76 · 26/10/2022 19:29

Thanks Light

That sounds tough Carrie. I was just thinking this morning when I was playing with Playmobil with DD how different things are than with DS. She plays with all sorts of things and can play independently but prefers me to play too. When DS was younger the house was much tidier as he wouldn't get a toy out to play with. Nearly all the play was lead by me (and I would tidy up as we went along).

We got the marble run out on Monday, we hadn't had it out in ages as DS seemed to have lost interest and I was worried about DD (and DS) putting the marbles in their mouths. We had a great time - we all like the noises it makes and DS loves letting the marbles run through his fingers so good sensory feedback. DS is still not really into many toys as such. He has lots of bells, whistles and musical toys. It's all either noisy or messy - water play is probably still number 1 here. Carrie if you took your DS to a toy shop what would he do?

StarDog · 26/10/2022 19:33

Once again, so appreciative of all the ideas and suggestions bounced around here. You are doing amazing things for your children and it really give me hope that there are always more ideas to try and suggestions to think about. Thank you.

carriebradshawwithlessshoes · 26/10/2022 22:08

Dimples, ignore the toys!! Sometimes if there are toys in a shop I show him, even give him a sensory toy. He sort of looks at it and maybe a quick prod but then just walks off. Really not bothered. Unlike a sweet/ food shop where I would struggle to restrain him!

SusiePevensie · 27/10/2022 08:11

Carrie - might a science experiment kit appeal? Long shot, perhaps, but they're a way of engaging that isn't exactly playing: www.galttoys.com/collections/science-kits

ahna68 · 27/10/2022 08:13

@carriebradshawwithlessshoes smoking did give me a laugh! The way you describe DS sounds so familiar. DD also ok on eye contact when people are at ours (better than she used to be) but I find people going on and on about how great the eye contact is a bit annoying after a while - it can be hard to celebrate small wins.

DD will also not show interest in hardly any toys, and if she does (mostly building blocks) zero interest in making it a back and forth interaction. She does like water so I’m wondering about the table idea above - in the non summer months I don’t tend to try water play outside of bathtime but I probably should. luckily on the toys anything she ignores gets picked up by DD2.

she still isn’t well with this virus, causing ulcers in her mouth so eating is tough. Especially tough since such a small range of foods she will try. DD2 had it last week and it didn’t hit her hard - DD1 tends to get so much more ill and fever will frequently go over 39 (even the armpit measurement). I’m paranoid about seizure risk at those levels although she hasn’t had any to date. It’s hard I guess that she doesn’t understand what’s happening and can’t communicate what she feels.

Spoke to DD2 nursery to ask if they notice anything re development. They agreed her language development has gone quite flat - not many words and the same ones for a few months. But I guess it’s just watch this space. The tip toe walking and spinning is continuing but at the same time she’s still being her interactive bubbly self.

openupmyeagereyes · 27/10/2022 08:40

carrie, I agree in trying real life, practical things since he’s not interested in toys at the moment.

ahna when ds was younger I used to fill up the bathroom sink with water, add some bubbles and let him play. He loved it and only a little got splashed over the edge. A tuff tray is easier, add a container for water and jugs and cups for pouring. Add bubbles or those water colour tablets, a water wheel. It’s great sensory play.

ahna68 · 27/10/2022 08:46

Somehow I’d never heard of a tuff tray.. but Googling and looks like a good investment for sensory play!

openupmyeagereyes · 27/10/2022 08:48

I wish I’d had one when ds was younger

openupmyeagereyes · 27/10/2022 08:48

Get one with a stand!

UnoQueenie · 27/10/2022 18:59

Sorry for the radio silence, managed to lock myself out of mn!
@carriebradshawwithlessshoes it's tough isn't it but then if you find one thing, that could be the thing that holds his attention?
For DS, aside from screens, it's board games and card games. Free play was always hard for him, he had so many castles etc when he was younger and would just play out scenes from TV programmes or copied the way he'd seen other kids play, like literally. But he has an incredible imagination, he just couldn't use those toys to unlock it, so I told him stories at bedtime and he started making them up too. When he was aboutv2, the only things he really liked doing were water play and playdo so I remember just copying what he was doing without saying anything. He thought it was hilarious and we built the joint attention from there.

StarDog · 28/10/2022 22:04

But what do you do when the one thing doesn't have a value anymore as the ask is too much?

The one thing has been working really well for us until a few weeks ago when the ask, the thing DC needed to do, was too much. It wasn't a negotiable thing and professionals meant to support it didn't.

In hindsight I shouldn't have used the one thing and should have taken DC and walked away when it was obvious it wasn't going to happen because now we're seeing knock on impact where DC is trying to manage the anxiety through control.
In reality what I'm probably asking for is a handhold that I made a bad judgement call and it's going to take a while to get back on track.

UnoQueenie · 28/10/2022 22:57

I think the things evolve over time @stardog and we can support that without putting on demands but yes it's hard and we're all doing the best we can, so don't beat yourself up.
We have had a really lovely week so far, very chilled out and some pumpkin picking and a disco, but Halloween excitement is building! More pumpkin picking tomorrow then back to school Mon, rushing home to trick or treat!

carriebradshawwithlessshoes · 30/10/2022 12:22

Mixed week here I suppose, reading my description of how DS ‘is’ and your responses makes me realise that I suppose it’s hard. But then from our stories I do think which is ‘harder’, not that it’s any competition… a child who struggles to go out, eat a good variety of foods, can’t go to a restaurant, would struggle on a plane etc (we are ok on all of those things), or who is as I describe DS which is typical toddler ‘hard work’ but which isn’t getting better? I don’t know, they are different aren’t they? I suppose I feel for us the NV element of DS is and should be enough, and we don’t have a lot of the challenges others face, yet do have challenges. I often think if DS spoke and communicated I could cope with a whole lot more in terms of behaviour. As Ahna says, it’s a ‘small win’ I feel that we can do all of the things I mention above.

in particular when we talk on this thread about run up to Xmas or Halloween etc, it’s like DS doesn’t have a clue. There’s no excitement but then Is that because he can’t communicate or understand or what? As I sometimes do (but rarely because I find it depressing) I sat down with his communication cards today, he told me accurately what had happened this week and fairly indignantly that yes it’s Halloween tomorrow and he does want to go out with DD trick or treating. But yet if I talk about it generally he shows no reaction day to day.

he is still doing the screaming thing which is (especially in the absence of speech) doing my fucking head in. Imagine if someone said to you open your mouth as wide as possible and make the highest pitched noise you can and just hold it for as long as possible… it’s like that. I sometimes think my head is about to explode.

Feeling quite downbeat about school and any prospect they can change him. He did say today when we were using the cards that he doesn’t like school, he said because of the children although he likes the teachers. He doesn’t like the work and would rather stay here with me. So that sounds really positive!

he has done some quite clever maths and other work with me at his little desk over the hol which at the request of school I’ve recorded and sent to them. This does give me hope with some things but then I wonder if it only really pisses them off if they can’t as the professionals get him to do anything there!

so that’s where we are at. Star dog, I did read your post a few times but my brain is seizing up in old age I feel. What have you been doing to get him to do what? Do you mean in any ABA type scenario?

openupmyeagereyes · 30/10/2022 13:07

carrie why don’t you use ds’ cards with him every day? Surely that’s the best way to encourage communication? It sounds like he has a lot to say when it’s approached in a way he can manage. Have you asked him why he screams?

Also, home is presumably the place he feels most comfortable so it’s not surprising, necessarily, that he will do things for you that he won’t for others.

stardog you didn’t give much detail, but I have found that nothing works forever as an external motivation. That’s why many don’t recommend it. Our ds can only be bribed when he allows himself to be, otherwise he’ll just dig his heels in. I don’t know how old your dc is, but I have found as ds has got older he will be reasoned with more often.

openupmyeagereyes · 30/10/2022 13:49

We’ve had a decent week, I’ve had a cold which hampered us a bit. We had a play date at a friend’s house which was lovely, went to the toy shop in town, went to visit the in-laws and went to Macdonalds as ds will now eat a whole portion of fries!

Not sure how back to school will go.

carriebradshawwithlessshoes · 30/10/2022 15:43

Open, I don’t use the cards often because I just find if depressing still to be here at 7, no words etc etc. I know that’s not the point tho.

openupmyeagereyes · 30/10/2022 16:02

I know that you wish it were different, but you have to meet him where he is. If he had free access to them, maybe he would be less frustrated and scream less. If he was using AAC you would let him have free access to it so he could communicate whenever he wanted.

livpotter · 30/10/2022 16:29

Carrie the cards do sound super positive. I would say that through the cards (from
What you have written) your ds can communicate more than mine even though mine uses speech, so I would definitely persevere with them.
I also agree with open about the school. My
Ds shows much less to the school staff than he would at home with us. He's getting better about it but there so much external stimuli at school it's definitely harder for him.

I get you about the screaming though, that would drive me mad. The thing that drives me most insane is when ds gets stuck in an echolalia loop of asking the same question over and over again. I know it's an anxiety thing but I get very frustrated by it.

So ds has left the house once this half term, when I bribed him to go to the dentist. Thankfully there have been people around to take dd out or on play dates because otherwise I think she would have gone mad by now. Both kids have inset days tomorrow. Can't believe it's the run up to Christmas once they get back! It feels like this year has disappeared.

UnoQueenie · 30/10/2022 18:00

How is it dark at 5 now?? Urgh!
@carriebradshawwithlessshoes the cards do sound really positive.
@livpotter yes repetition happens here too sometimes, aldo transposing letters so saying Pally Nallopeen all day and chuckling to himself because he knows it's 'wrong' but thinks it's hilarious. I just join in now and it's another way we've encouraged joint attention. We've managed to get out to a forest today before it got dark and prepping everything for tomorrow. We also spent ages examining the bin schedule for next year! Back to school tomorrow, another change so not sure how it will go, but not long now until the next holidays.

livpotter · 30/10/2022 18:06

Uno ds thinks it hilarious to inset random words into stories when he's reading (usually cow!) Which is all good and pretty funny. The anxiety repetition is usually a demand for something impossible for me to give him and any answer just makes him more anxious, so I just have to not say anything at all, but it gets very frustrating for all involved!

livpotter · 30/10/2022 18:07

Love examining the bin schedule Grin

StarDog · 30/10/2022 18:10

Thank you open ... both for the suggestions re the one thing and McDonald's. I've been thinking I'm the only who buys Happy Meals for the fries. Hats off to everyone who's managed to survive half term

UnoQueenie · 30/10/2022 18:21

We had a lovely half term, I'm going to miss DS a lot next week. Quite down about it tbh.

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