Thread 13: autism and any other additional needs A/W ‘23

[openupmyeagereyes]

Thread 13.

For parents / carers of disabled children, autism, adhd, and all other related neurological conditions. Most of us have children in primary school. But everybody welcome!

Chatting about anything and everything related to SN!

Links to previous threads.

Thread 12
https://www.mumsnet.com/talk/special_needs/4816294-thread-12-autism-and-any-other-additional-needs?page=1

Thread 11
https://www.mumsnet.com/talk/special_needs/4711291-primary-school-auties-11-2023-is-here 

Thread 10
https://www.mumsnet.com/talk/special_needs/4592899-primary-school-auties-10-summer-and-beyond-2022?page=1

Thread 9
https://www.mumsnet.com/talk/special_needs/4502988-Primary-school-auties-thread-9-spring-summer-2022

Thread 8
https://www.mumsnet.com/talk/special_needs/4422100-Primary-school-auties-step-into-Christmas-and-the-New-Year-thread-8

Thread 7
https://www.mumsnet.com/talk/special_needs/4303826-Primary-school-auties-summer-and-the-new-academic-year-thread-7

Thread 6
https://www.mumsnet.com/talk/special_needs/4166833-Primary-school-auties-spring-2021-and-beyond-thread-6

Thread 5
https://www.mumsnet.com/talk/special_needs/3953023-Primary-school-auties-summer-and-beyond-thread-5?page=36&reply=104240251

Thread 4
https://www.mumsnet.com/talk/special_needs/3748449-Primary-school-Auties-into-2020-thread-4

Thread 3
https://www.mumsnet.com/talk/special_needs/3628263-Auties-transition-to-Year-1-thread-3

Thread 2
https://www.mumsnet.com/talk/special_needs/3451020-Reception-auties-2018-19-thread-2

Thread 1
https://www.mumsnet.com/talk/special_needs/3080753-DS-with-ASD-starting-school-Sept-2018-I-am-feeling-overwhelmed

hey everyone took me a while to realise the old one was dead..

@danni0509 can see why that school visit would leave you questioning if it’s the right setting. Glad DH saw it too. I don’t think non verbal is necessary indicative of ‘low functioning’ (and I know you caveated that with no offence and for me none taken) but I do understand if your DS is talking it’s tough to have him only with non speaking children. Is it the same in other classes at the school / do you think there’s a chance the composition of the class mixes up a bit? The benefits you describe of the school do sound positive.

My week felt tough but that was partly because starting new job is so tiring.. when I’m settled will wfh more but this week I had to go in every day which was a lot!! Only 2 really bad nights w DD but that was 2 too many. We have reopened the dialogue with respite for occasional weekend stays, will see how that goes. Don’t feel sure I want to do that yet but we (DH and I) are both struggling with it all atm and a few people in her care system have been suggesting this for a while.

otherwise we are having loads of screeching noises and still some of the odd breathing ‘games’. rainy weekend ahead here too whcih will be tough. she already did soft play one afternoon this week whcih she loves when there but always results in meltdown after.

246810k does your child have a SEN support plan at school. At my children's school all the SEN children have separate meetings to parents evening each term (which are about 3x as long) to go through the support plans.

Ahna that sounds exhausting. I understand your reluctance re respite - but I am lucky to have family close at hand to help us.

DS is going to cookery class with BIL and cousin this morning and we're planning a lazy afternoon (for the kids any way). Tomorrow DD has her first party since she started school.

Danni it does sound as though it is the class that is wrong rather than perhaps the school. If they need more staff in the older class due to your boy's needs then that should be addressed when EHCP is reviewed. I think that I would push to change classes in the short term (does that also get him away from the wind up teacher) whilst you explore other options.

Welcome @246810k as @dimples76 said i would speak to senco and make sure they are doing assess plan do cycles or whatever the setting calls them, and tracking support and progress.
@Ahna65 sounds tough. Don't feel bad about respite, it's there to make you a more regulated parent at the end of the day.
@dimples76 cookery class sounds fun. I hope DS enjoys it and that DD enjoys the party.
I am having second thoughts about potential new job. It's so nice knowing I have all the holidays off at the moment, like next week is all sorted from that poitnof.ciew, and I don't have to worry about working at home with dS (in theory possible if he's regulated but not otherwise, so always stress for me worrying about it). But new job is much more money. Its hard isn't it! I do love my current job at the moment too. I was thinking I might try a side hussle making something but no idea what!! Just going to have a relaxed day in town I hope today. Ease into half term!
Oh I went a read through unexplained forum the other day, some v interesting things on there for anyone interested in all that! Time slips were particularly interesting but I went down a bit of a rabbit hole with it all!

246810k yes, it’s definitely reasonable, especially since you may have to wait to find a specialist place.

What sort of things is he struggling with?

Hi all. He's autistic and we have regular meetings with senco sho completes cycles. He has a 1 to 1 working with him. Interesting point that other schools seem to get a longer slot though I guess we do already have the review cycle meetings regularly

Have you listened to the Uncanny podcast eliazabethbennet? I really enjoyed it, they are also doing a few tv episodes on BBC 2 at the Moment.

Welcome 246810K.

Sorry about the screeching noises Ahna. Well done on persevering with the new job. I'm three weeks in and feeling a bit more settled now, mine's entirely work from home though.

@Ahna65 I’m pleased I didn’t cause any offence, it’s hard to explain when you try to put something into words over the internet, I have a clumsy way of trying to explain something sensitively.

I didn’t mean low functioning just from having no speech alone, because I know it’s not that black and white, it also works in the opposite direction, ds used to be a lot lower functioning than he is now, but with speech! So I know from experience it’s not quite that simple. Also low / high functioning will mean different things to different people. We all have our own ideas on what those terms mean, I know some don’t like to use the terms at all, which is fine, but I do still use them.

Also a lot from the so called ‘lower functioning’ type lists, ds still does! I don’t see him as lower functioning though, not anymore. I don’t think that is just because he has speech. It’s because he is a proficient communicator. And understands most of what is said. When he didn’t have all of those combined skills I thought he was ‘lower functioning’ too, even when he had speech.

I made my own judgement on ds class on presentation, they are what ‘I’ would call lower functioning, non verbal, walking around in circles doing nothing but stimming, mouthing bricks, lots of noises, unable to sit down to tasks, highly motivated by playing toddler type games / ring around a roses that type of thing, no communication, and definitely no idea on social interaction, then lots ds tells me about things, and things I see on the parent app what the teacher will put on.

All those have made me come to the conclusion that ds is way beyond that type of level (now) So makes no sense to me to have him in a class with only those children. I want him to work on the next stages for him, especially with social interaction and he can’t do that if he’s only with children who aren’t anywhere at his current level.

Hope I make sense? and I haven’t managed to dig myself an even deeper hole! 🤣

I totally know what you mean @danni0509 and it is useful to use those terms for context, I agree. I guess it's just that I think although DS is high functioning, he is due to the amount of support and scaffolding in place to support him. So when he's dysregulated he shows more of those lower functioning behaviours like making noises etc, then when he's regulated he's having conversations and making up codes etc. Chatting on about history. There's a girl in his class who is non verbal and her parents were shocked when she started using a comms device because it showed she was much more aware of what was going on around her than they had thought. Her receptive understanding was much higher than they had assumed.
So I think I'm not offended by the terms and I know what you mean, and it's clearer shorthand to use, but I think we need to be mindful too and I myself distrust the terms because I think it's all much more interlinked than that.
I have to go and make up codes for DS. He's decided he wants to crackers codes for a job when he's a grown up!

@livpotter and @openupmyeagereyes will check out podcast recs, thank you 😊

Glad the job is going ok @livpotter !

due to have a tour of the respite place. However I have a bit cold feet. Found myself on a different mumsnet thread where posters were talking about not allowing sleepovers (for NT teenagers) bc of safeguarding issues. It got me thinking, am I crazy to do respite care with a non verbal child? Is that just very high risk? Obviously our need for rest comes secondary to any of those types of risks. I kind of can’t unthink this worry now that I have it. Intrigued for your honest thoughts esp those of you who have / have had non verbal DCs - would you leave them with others overnight?

I want him to work on the next stages for him, especially with social interaction and he can’t do that if he’s only with children who aren’t anywhere at his current level

danni this is key and something that can’t happen in the current setup. It’s encouraging him to act in similar ways, and why shouldn’t he in that context? What incentive does he have not to when it’s the norm?

liv glad the new job is going well.

Ahna I can totally understand your fears. Go and visit and ask them about their safeguarding procedures. Are you able to speak to any other parents that use it?

Yes that's it isn't it @danni0509 so you need him to have peers available.
@Ahna65 I think I would talk to other parents and to the organisation about their policies etc. Honestly I'd be quite wary, but you have to consider it in the round, and weigh those risks against the risks of your family never getting any sleep etc.
We're off to a good start for half term I think. Spent too much on Halloween sweets and tat as I took DS shopping with me! We tried a new swimming place today which went well, although it was advertised as a fun swim, but was more like a 121 lesson so it was good and DS did really well, but I could see his PDA shining out after a while as he got fed up doing tasks. Teacher was great with him though and went with his ideas! Not cheap though and slightly misadvertised.

Ahna I have a friend that uses overnight respite for her non verbal child and it's really life changing for them. I agree with the others, check out their safeguarding policies etc.

Ah @livpotter that's good to hear. Was starting to wonder if I was crazy to even consider it. We will have a tour next week and will ask more about it all.

@Ahna65 Can you get someone to come to your house and you could go for a night away? Or wouldn't that work?

Ahna is it worth asking the place whether they're able to put you in touch with other families that use the service. I think between that and the safeguarding policy and your impressions when you do the tour, you might feel more (or less) confident. I guess we are all entrusting strangers (at school) to take care of our children, I know there is more potential with overnight stays but we can never eliminate all risks, can we. My son has always been pretty verbal but I don't think he would understand if things were wrong/report to me and I worry that if another adult told him to keep something secret that he probably would. So totally understand your fears.

I could have wept today. I got the court date through for the appeal I lodged 5 weeks ago. It is not until 18th July so if we do need the hearing to change placements then we won't have a result until after the end of the school year so won't be able to do a goodbye to current school or transition visit to the new one.

In addition bikeability started at school today. As I feared DS had not fully understood that he was not taking part (he did get to play on his trike with his TA) and he seems rather sad.

Well I finally found this! Catching up quickly before work..

Ahna, everyone will have different views. What is the arrangement, is it a group of children in a secure setting, as opposed to like a one on one family arrangement as you would have, say, with foster care? Is the reason for you considering this solely sleep? If it is and it was us I would do absolutely everything else first including ordering melatonin online from a reputable supplier, plus anything else I could try that I was sure wouldn’t kill him! Respite would be my last option for a NV child, if sleep was the ultimate issue (as it is with many of our children) if this was something that could be potentially ‘fixed’ another way.

Danni your post resonates because I’ve had similar conversations. I think, though, that schools look at it the other way around. They could have in their midst an academically brilliant verbally brilliant and so on child but what determines where they place them and how they deal with them isn’t those things, it’s their behaviour. I’m not saying that’s right or wrong and you would hope they would scratch a little deeper and think are these behaviours arising or are we limiting development (in any context) by not having them with more able peers but they don’t see it like that imo. They literally see the child in front of their eyes and place them according to presentation based on behavioural presentation (such as challenging behaviours which will always take precedence.) The flip side is that there are DC who I may argue in terms of ability are lower than DS but who have remained in his old MS school, ok working years behind their peers, but who cooperate and sit and exhibit no challenging behaviours.

I think a lot of schools take the easy or obvious option. IMO and it is only that they are not as invested in our children in the way that we are which is sad. The answer though surely has to be that you ask about the other classes and insist on a trial hybrid for a while. I think it would be very diff for them to give you a blanket no. However I do think again in my experience that DS would then have to perform or they would move him back again to what is easier for them or what they deem more appropriate, based not on ability or exposure to peers with social skills or verbal ability etc but just purely on where they feel it’s easiest/ best to place him.

I am feeling very fed up with (both) of mine atm. It was my birthday yesterday. Dd is off school ds is not. DS has been under the weather and is also on his last wean off of the epilepsy meds. The epilepsy meds are a mood stabiliser apparently, when I discussed this with his consultant she acknowledged this but said she would not prescribe for mood alone.

so went out for lunch with my parents and Dd yesterday. Bought a cake and bottle of champagne. DDs behaviour atm is (to say she’s my ‘typical’ child) just terrible. She is so rude and short with everyone, think Kevin/ Harry Enfield but with more attitude. I was furious with her whole manner all day, she’s grounded let’s just say. Then DS came home from school and literally threw himself on the floor face down and screamed for 3 hours. Have absolutely no fucking idea why, wouldn’t be consoled, gave up in the end.

chsmpagne is still in the fridge, unopened, cake in the breadbin. It’s an absolute delight to be back at work 😭

Belated happy birthday carrie
Sorry your day was disappointing. Did you get any feedback on how ds had been at school that might shed light on how he was when he got home?

I think I have asked this before but do you think there is always a ‘reason’ for behaviour like DSs yesterday? Someone said years ago ‘a child will not cry for no reason.’ I said this at work to a friend with kids (hers are NT) and she said that’s rubbish. The fact that DS can flick from behaviour like this to then almost euphoria then back again or can be cajoled (sometimes) out of it by sweets etc makes me think there is nothing fundamentally ‘wrong.’ Also the fact that there is nothing external going on, like I’ve taken him somewhere where he feels uncomfortable, makes me think it’s just his ND brain and not ‘something’ identifiable that has happened/ is wrong.

Thanks open, we crossed. I asked that of them this morning, not heard back yet.

I think there’s always a reason for behaviour. Depending on what it is it doesn’t have to mean that something is ‘wrong’ but there’s always a reason for the child, even if they can’t explain it or don’t consciously know what it is themselves.

When we talk about behaviour in this context we mean negative behaviour, don’t we. I think parents of NT kids don’t often have to think very deeply about reasons. The child is probably moved on much more easily with a stern word or admonishment and they just crack on as normal. The child will internalise these interactions though and be resentful over time, I’m sure.

So the adult will say there’s ‘no reason’ for it because they never have to bother to try and work it out but that doesn’t mean it’s true.