Thread 12. Autism and any other additional needs.

[danni0509]

Thread 12.

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!

Just typing quick as ds needs to get ready for bed. I’ll link the previous threads later.

x

@openupmyeagereyes sounds like a nice day out. What time is he going to bed?

Ahna he’s usually asleep about 8:15.

And I guess nudging later doesn’t necessarily help the wakes @openupmyeagereyes ? For us it helps a little but not fully. Pre 9pm in bed always seems to backfire but later doesn’t guarantee a sleep through either.

DD is totally off peppa pig now which kinda makes sense since she’s had it for a couple of years, but she keeps requesting a screen (tv remote in hand / my hand to laptop etc) but whenever I experiment w new shows/ numbers videos etc she just gets angry. I feel like she needs to get to know something to like it but not sure (a) what ; and (b) how to push through the angry pushing away phase. I also think having reliable screen time helps her to regulate and can maybe help her pick up language. So I’m keen to find something! Anyone go through a similar phase?

It doesn’t seem to Ahna, it just means he gets less overall sleep.

I keep hearing about Miss Rachael (?) on social media which is a YouTube programme aimed at helping SN kids develop speech etc. might be worth checking out.

Sorry Ahna, she is American and I forgot that you are in NL.

Just resurfacing from a couple of weeks of birthdays and manic times at schools, especially DD who is finishing year 6 so it’s full on. Plus transitions for her for secondary. I also seemed to think it was a great plan to arrange lots of family get together for birthdays, I must be losing my mind. It’s been chaos. I’m still finding random eye liners and lipglosses from DDs party here the other day with her friends, it was like an episode of Love Island 😡.

Anyway welcome to the new posters, I’ve been reading, lots of good advice. Hope everyone else is going on ok. @Dotdotdot19 a lot of what you say really resonates, so keep asking, no need to wait for anything specific to say.

We had DSs report and parents eve yesterday. I just feel very down about him. The report was fine, good in fact. Said he still struggled to concentrate in class but was now showing his abilities in a one to one setting and communicating by selecting sentences read from a board to ask for things and tell them things about what he was doing at home etc. so a damn sight better than at the start of the year. Maths they said was his obvious strength but his development was still very hard to assess because it’s so patchy.

They said they measure on a scale of 1 to 5, his peers fell mostly between 1 and 3, DS has some gaps in some 1 areas but is exceeding 5 in many more. They also said there are days when he flies through everything and then others when they can get very little out of him. I wonder if that is ‘normal?’. They gave the impression on both fronts that with the other kids it isn’t really… she laughed and said ‘oh with the others we know day to day what we are getting’, DS seems to be more of a wild card.

What bothers me though really is still the set up/ environment. I feel my thoughts are more aligned to Danni on this as opposed to Open and Moomin and wonder if these general SSs where they don’t do GCSEs and aren’t specifically geared up to capable autistic children (as the schools of those 2 posters seem to be) just aren’t as satisfactory an option to MS. DS class apparently comprises 8, most non verbal, some with quite extreme physical issues. DS learning re maths and English exceeds what they are doing but they get additional resources in for him so they say that’s not a problem as he only really works one to one anyway. From what they were saying the ones that are NV have severe learning disabilities, I don’t feel DS has that and obviously doesn’t have physical issues.

I just don’t feel he is like his peers and my worry that he’s in the wrong place was exacerbated the other day when someone said in passing that their child had been rejected from this school as he was ‘too bright and would be bored.’ DS in the meantime comes home from school permanently covered in glitter and water like he’s in a bloody playgroup.

I asked (diplomatically) if she felt he was with the right peers, she said that really as there are so few children in ks2 there (a handful) they tend to be taught together. DS is apparently the youngest in the school.

BUT as DH repeatedly tells me we scoured the area and there is nowhere else. Just unsatisfactory really. Or am I making a mountain?

And Open I’m checking out Miss Rachel. She sounds like an escort but I’ll see what she’s about… 🙄

carrie probably she’s for younger kids, I’ve not seen much myself.

Am mulling over your post. Write more later. The main thing perhaps is that he doesn’t have to be at this school forever. They don’t start GCSE courses until 14 (?) so they aren’t out of the question.

Daniel Tiger’s Neighbourhood is also one I’ve heard has helped younger children learn social skills.

@carriebradshawwithlessshoes I understand your concerns with the school, we are a while off that age but have the same worries. DH sees it as a failing in the Dutch system but I think it's the same everywhere (except maybe US? where things are more advanced around autism education (at a cost...))

When I have voiced concerns (maybe even on here a while ago) I think someone said that the chances are a high number of the DCs in SEN are also autistic, just statistically. Which did make sense to me. In NL as well as SEN schools you have another bucket for low IQ / behavioural problems / some SEN - I would be hesitant about DD being in there for the same reasons. But at the same time I find it hard to see without verbal communication / following instructions who she could get on in any structured educational environment.

Bday period sounds like mayhem but hope it was somewhat enjoyable.

@carriebradshawwithlessshoes ours is a general specialist placement. I know what you mean though as DS is academically more able, but then socially he's still so different that I don't think he'd cope with a higher demand setting (and the PDA makes some days harder for him than others). He'll have a run of being 'typical' and learning lots etc, but then it all catches up and he'll spend the next day just wanting to do sensory stuff and jump or spin. I think it's the best place for now. They do gcses too, I thought the majority did? Anyway,you can always sit them for the exams yourself if it comes to that when they're older. And the exams can be taken post 16 if that works out better.

Moomin, does your school have children who are nv / not toilet trained/ cannot walk etc?

I think many don’t do GCSEs. Dannis doesn’t. We looked at another smaller general SS near us and they didn’t either.

Thanks Open will look at that. Look forward to any further thoughts.

Ahna it seems from my experiences (and I spent hours going round them all) that you get…

1. schools for HF ASD (sorry Moomin don’t shout at me I’m just using that term loosely!) who can speak, write, are toilet trained, are bright, just struggle with some social things or perhaps are quite explosive. Not DS. I’m sure they would do GCSEs etc. they are the Chris packhams and Anne heghartys.
2. schools or placements for children who have salt issues but absolutely nothing else going on. Or nothing much else going on. Not DS. Again there’s no reason not to do GCSEs etc.
3. schools that cater for children with fairly severe LDs and within that there will be the NV children who get swept into that same cohort because they don’t have the abilities to get them into 1 or 2. DS is stuck here at the moment. They don’t do GCSEs etc because that’s not their profile of child.

I'll pm you @carriebradshawwithlessshoes

Thank you!

I wonder how common your ds’ presentation is carrie, i.e. How many like him there are in a particular LA or county? What do you think the ideal provision for him would be? I agree that a lack of speech shouldn’t be a barrier to a good education.

Given the settings available are not ideal, I think asking yourself periodically ’what does he most need help with right now?’ might be a good approach. So for him right now, communication and attention might be the key things and where he is currently might be best suited for him based on that. Once he’s made progress in these areas then it might open up other options.

It’s great if they are supporting his strengths by giving him additional maths and English work.

I had a chat with ds’ teacher a couple of weeks ago. She was in a ms school before and I asked her how having 8 children at this school (with 2-3 TA’s) compared to 30 in a ms school and she said it was much, much harder. This would be your category 1 carrie!

Yesterday when I took ds in the classroom, one of the boys was a bit dysregulated and was crawling about on the floor under people’s chairs and desks, pushing into them. Other kids not happy and one of them hit him. TA’s trying to wrangle them as teacher was out of the classroom. I imagine there’s stuff like that on a regular basis.

Carrie when you were looking at school options did you look at Breckenbrough at Thirsk? Maybe that's too far from you.

We do seem to have more special schools in our county that do GCSEs. The 2 that I like do but it is a very small minority of the children who sit them. Most do level 1 functional skills instead. DS won't be doing GCSEs so it's not a worry of mine but the closest special school to us specialises in severe/profound learning disabilities so I wouldn't class their children as DS's peers either. The one I want for DS specialises in Autism and moderate learning disabilities which I think is DS (although still not diagnosed).

I am fed up of waiting to hear back from.thr LA etc. It's a week since I made a formal complaint re lack of decision following annual review. I was going to chase them up today but I just read their complaints policy which states 10 working days for stage 1 complaints, ugghh. Maybe I will chase CAMHS instead. Should actually be working...

My borough doesn't have a single special school where they do GCSEs (well maybe a couple). They expect such children to attend mainstream or a base at a push. My DD is still primary but I got told not to bother looking at the bases for her age as while she'd get her small class size they only really cater for the moderate end of the 'mild to moderate' autism that they're meant to and the classes for her age would be working 2-4 years behind.

Dimples yes I looked but breckenbrough is def a category 1 school ie for very fluently speaking kids who are autistic but are super bright and just struggle with the surrounds of MS. That’s not DS!

ha Open, I ask all the time where should he be?! I often think maybe home Ed?! If not, It’s a fantasy placement in my head. I think he is an anomaly really. Think I’ve said Drs have always called him a puzzle. I suppose what would be great but doesn’t exist is a school/ unit which has the starting point of recognising what he can do (academically) and striving to take that as far as he can achieve, narrowing the gap as far as possible in some things as compared to MS. But doing it in a way where measurement isn’t about speech so they would have to get creative there. He can focus far better in a small group/ one to one so that would need to be the platform for that progress being made.

Behaviour wise he’s no major issues that require massive monitoring but in my fantasy school they would look day to day at what he isn’t doing/ where the gaps are and work out why that is and how to plug them and REALLY try to plug them! Oh and there would be lots of kids like him!

I do think from talking to others away from this thread that SSs rather than trying to narrow development gaps often just let it go and don’t try to move the children on rather than really trying with them which massively irritates me. Examples, from yesterday, teacher said ‘oh we were just putting on DSs shoes after PE until you said he could do it himself.’ Well yes, he can, but why were they just doing it anyway, shouldn’t they have been doing what was necessary to get him to do it?

A poster told me a while ago the SS just let the children eat with their hands and not use cutlery and another said the school just stuck them all in nappies and didn’t even contemplate that they could be toilet trained. Just accepting what they have in front of them and not putting in the slog. The latter person moved him to a residential school where they had him out of pull ups in no time with the right input. The first school then either made a massive misjudgement or couldn’t be bothered which surely isn’t what ‘specialist’ education is about?!

I often feel that this SS just thinks ‘oh DS can’t…’ and so just accepts that’s as it is. My starting point in my fantasy school would be that he absolutely can but they may just need to go about the teaching differently.

carrie I did mean in a more blue sky way of thinking rather than your current choice of offerings.

Is he keen to sit down and do academic work across the curriculum then?

I agree open with everything you say about periodic review. Yes, maybe this is the best place for communication and attention. If those issues were better I think there are other options. Maybe I’m just being too uptight about it all.

They only reported on English maths and science. I’m not sure I’d say keen and some days keener than others but one to one he shows he’s v capable apparently. But he’s always done stuff with me, pre covid at home we would do how many syllables and opposite words etc, I remember showing the senco at MS my videos and she said year 2 or whatever it was then weren’t doing that (this was pre reception). I showed a Head at a SS and she said god don’t send him here my year 7s aren’t doing this! 🙄

so he can do things but yet shows v little interest in what is to my mind basic stuff like Lego, drawing, and playing and sitting down!!

Have you though about moving somewhere for better school options?

As far as I know we have one ss school that follows the mainstream curriculum so theoretically they would access GCSEs. There might be others but I was more focused on looking at the complex needs schools as behaviourally they would be a better fit for my DD.

Although something has clicked in her recently and she is becoming more engaged and less placid. Even a few tantrums when told no to things. I am aware that this sounds like every parents nightmare but she has always been so placid and off in her own little world and just generally uninterested in things that I'm taking it as a win! The increase in her (still non verbal) communication with us is giving me hope!

Also, I've got a meeting with her mainstream Senco. I've written a list of things to discuss such as her intimate care plan, support during unstructured times and how they are planning to fulfil her EHCP. DH has told me I appear to be interviewing them...

@Dotdotdot19 again that’s so like DS! I remember nursery calling to say he had kicked off because he couldn’t go outside and they were having a party as before he had been so placid he wouldn’t have cared less.