Thread 14 - Autism and any other SEN

[dimples76]

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

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

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

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

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

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

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

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

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

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

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

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

Hi all, sorry I've not been on, have been reading but not much headspace! @dimples76 that does sound harsh and I'd be asking how their approach is meeting need. This was our problem with this new teacher, just not being firm enough with the TAs that they have to use a less stern and more low demand approach (praise, treating DS equally, using non declarative language etc, all the things I bang on about here!!) So they were then surprised when he was getting dysregulated. I mean, I've literally just told you why, but never mind!! So I then went from having daily blow by blow updates, which were majorly stressing me out so I asked for a less detailed approach, and now I have had nothing at all for days!! So I'm drawing a line and just taking it as it comes. DS will at least tell me now about things but he was trying to get me to change every little thing and it's better in some ways if I just back off I think. We will see! Three weeks until half term!! We are having quite a chilled out weekend and are watching the rest of strictly from last night later on. I wasn't going to watch this year but we did last night and I realised how much I've missed it.

We used to have a cleaner but then stopped in covid lockdowns and can't really justify it now. I loved having her, it was amazing.
Re: diets, I'm quite sceptical. We tried cutting out various things when DS was younger (ms teacher thought sugar caused his hyper mode but we later realised it was dysregulation) but it made no difference. He's got a slow metabolism which means he puts weight on more easily than most people but this evens out as he's getting taller. I think it's build as well.
Re: tourettes, I don't think DS has this but he definitely likes verbal stimms. Sometimes he'll spend ages making a sound like 'mela mela' and says he likes the feel of the sound. I can relate to that. I get songs or bits of songs stuck in my head and repeat them on loop without really realising (until DH is like, you've been singing that for hours...)

I just starting wondering about Tourettes because of DS getting in trouble at school re his vocalisations and because my sister (who is a TA) went on a course recently where the speaker said 75% of people with ADHD have Tourettes. Although from what I have read I don't think that stat is correct. I guess the main thing is that I think potentially a lot of sounds DS makes are involuntary and/or arise from absence of impulse control so he shouldn't be 'punished' for them.

How is everyone doing? dimples I hope you’re better now.

We are doing pretty well. Ds is doing well at school with some aspects, less well with others, but overall more positive which is good. Looking forward to half term.

Glad to hear that things are improving Open.

Since I posted about school phoning/messaging me regarding DS's behaviour I have not heard from them at all! DS has been incredibly calm the last few days especially towards me ...I am not expecting it to continue but will definitely enjoy it whilst it lasts. Still waiting to hear back from CAMHS with their thoughts re our daily calls and also the meds appointment. Also still waiting to hear when my viva will be rescheduled to..

I am still ill - it's been 2 weeks now so think I will go to the docs at end of the week if my chest has not improved. Anx then this morning, walking back home after dropping DD I tripped on an uneven paving stone, split my lip, broke my glasses and bruised my knee. So I have been feeling a bit sorry for myself today.

Oh no Dimples, sorry to hear that. I hope you are ok.

great re DS!

Hi all, have been reading and meaning to write. @dimples76 sorry about your fall poor thing.. and rubbish re the cancelled viva so last minute but maybe best if you were also sick. I'm sure you just want it over though!!

We've had a mixed sort of time. Had a few days away which went a lot better than any trips we've had for maybe the last 3 years or so? Probably a combination of low expectations, quiet hotel/beaches with it being very much end of season, some improvement by DD on food (she will generally eat fries now which means you can at least sit for an informal lunch) and progress on the sister interaction. So that was good!

At home things have been more mixed. Lots of taking clothes off atm. Often in bed, so wake up to a very wet bed (generally not poo) and washing of everything etc. Also at her swimming lesson this week she just wouldnt keep anything on which meant we had to stop it early. I know you can get things they can't unfasten for night but I feel it wouldnt be necessarily solving the issue? I don't think it's a potty training readiness thing but who knows to be honest.

Think I've said that sleep has been trending better for a while, but then Monday night she was awake from 1-8am, then slept for 20mins and awake for day! Obviously that's extreme but just no clear link of why.. And since more often than not now she does sleep from e.g. 2230-0630, I don't think I really want to try melatonin again if the general picture seems OK. But then it's hard to be hit by these terrible nights here and there!

In other news we get her ipad delivered today with a training session for us too. I'm intrigued. It will only be in Dutch I guess they don't have the technology to do both yet, or the budget maybe, but I guess if it goes well could try having an English one too. Then we get her new bed tomorrow. A lot going on for her this week...

Hope everyone is OK.

Hi everyone. Are most people on half-term next week?

dimples hope you’re better. Any news on doctorate?

Ahna glad sleeping is generally better. 10:30-6:30 is not bad at all.

We are ok, ds has been pretty steady. He has generally been sleeping longer but he was awake 11:20-2:30 the other night, then up
at 5. The clock change usually throws him off a bit but he should settle down after a few days.

Ahna I meant to ask how the iPad was going?

Ah @openupmyeagereyes that sounds like a painful night. For us DD’s waking spells always begin after / at 1am. Tbh the last week has been bad again for sleep. Saturday she was up from 2 - not sure if the hour had already changed then or not tbh but all I know was that yesterday felt soo long.

sadly she’s not taking to the iPad yet. I’ve spent a lot of time personalising it but she just tries to spin it or throw it around. We’ll keep trying, but I’m sceptical if she will take to it. Had it ready on the food page when had strawberries to offer her, and even then she wouldn’t tap- I did expect a bit more given she is familiar with pictos (albeit at home hasn’t even consistently taken to them).

she had an observation at daycare from the school we liked last week, and they emailed on Friday to say that they can’t accept her, she doesn’t meet the social / communicative/ emotional requirements they set. Tbh we knew it was a long shot but it’s a shame when they had this specific small class that was more care based. Now we are out of school style options and tbh getting our head around the care type place. I hate the phrase learning disabilities because it has a stigma and I don’t think it is a great descriptor, but ultimately that is where we are, at the extreme end of things - she is very severely impacted and her level of understanding appears to be very low too, she seems reasonably content but always whilst climbing / stimming / spinning things - no focus for anything else. Whilst we have been pushing for special school I think knowing deep down we don’t really see any sort of classroom environment working for her, at least absent huge leaps forward in the future. Sometimes I think the parenting culture now is overly focused on ‘advocating’ for everything and acceptance is also important. Maybe I’m just having a defeatist week.. Feel quite down about it all, trying not to look too far ahead for now.

I’m sorry Ahna, that must have been hard to hear, even if you were half expecting it. Just remember that she’s still young and there’s plenty of time for things to change, especially with support. Will you be in the NL for the foreseeable or is there a chance of a move back to the UK?

Thanks @openupmyeagereyes, you're of course right re changes.

Yes expect to stay in NL for foreseeable. There are some positives to our lifestyle here for both DDs, and mostly it suits us well. Also benefit from being near to MIL for some help. On the SEN / schooling considerations, it's hard to say if we'd be better off in UK. From what I see, it's such a lottery around LAs and competition for SEN provision. For DD, there's no way she could do any amount of time in MS even with 1-on-1 so I can see a scenario (here too) where if that setting was the only available, it would ultimately just result in her being at home. And I do hear that often SEN DCs are in MS in UK for a period / longer whilst SEN spots are not available.

I guess as well it's perhaps a bit semantics in a way. She won't be at a 'school' here and that doesn't feel good , but even if she was at a 'school' in the UK, if that was possible for her (I don't know enough about the system to know if it is the case), her challenges mean that she would still be doing the same things that she would be in a day facility, ultimately just playing really - unless there was a SEN school with a real magic bullet of course, but I think not.

One thing the UK has which I think doesn't exist at all here are residential school settings, which again I know v little about, but is something I could be open to in theory in the years to come (way too early to say now, but if I felt it would be best for her).

Hi all! Hope everyone's doing well. We are on half term here. Swimming went well today (DS actually swam without a float for almost a whole length!) Then we went for lunch and came home, played some games, just chilled out mostly. We're both exhausted from.school I think! Not much else planned this week aside.from some Halloween type things. Pumpkins ready to carve!
@Ahna65 sorry it's not working out as you'd hoped. As @openupmyeagereyes says, nothing is a permanent solution. And she is still so young, things might change.

@openupmyeagereyes we are having sleep problems much aligned to what you mention. It’s fairly constant though and doing us in atm. He’s on 2 sleep drugs, how can this be??? Also just rubbish with illness… I think I said this last year and someone told me to get checked out with the dr but I kid you not, in the last 5 weeks I’ve had what felt like mild flu… took me 1.5 weeks to feel half right, I then had a few days of feeling well. I then got bloody Covid which wiped out another 2 weeks. Shook it off and had one day of feeling well, my birthday. Thankfully I did manage to finally exit the house. The day after came down with the most horrific norovirus type thing I think I’ve ever had! I actually feel like I’ve not eaten or god forbid drunk booze for a month! Is this normal???!!!

Had a catch up with school on Fri. Apparently the last couple of weeks DS has been doing quite well. On Friday they asked him a question, he stopped what he was doing, looked up and replied ‘yes’ (the right answer.) School thought it was a fluke so asked again. He looked indignant and said again ‘yes!’. This all said he’s so frustrating in that we have been here before and it comes to nothing. I remember nursery saying he had asked at 3 for ‘watermelon’ but it’s like it then just never progresses. Which I find so odd. However it’s good they are not on about him for once.

@Ahna65 your system over there sounds very divisive. I just think it’s awful to pidgeon hole any child at 5. Here even in SSs whilst she may at 5 be in a class similar to what you say there are tiers that they can move up and out of. In the care place do they have that or is she then stuck? From what you say about eligibility criteria (it sounds like an interview!) the care places must be bursting at the seams! Can’t follow a classroom curriculum? Insufficient communication/ social skills? Errr… isn’t this a huge number of kids?

I echo the others re 5 being far too young to predict the future but I would be wary about her not developing beyond a care situ becoming a self fulfilling prophesy if those are the only experiences she is exposed to. You may have to send her there… or do you? I would look at anything else, the ABA option, as you have a nanny could you upskill her and home school? DS is far better one to one than in any group environment. Or, if she does go to the care place, could you do anything specific out of school? Or have a quasi school: home arrangement? Just thoughts. It’s a shame Danni isn’t still on here as her DS came on leaps and bounds from not even understanding ‘sit down’ at nursery. Development isn’t a race. Development isn’t linear. Just because she’s not doing something now doesn’t mean she never will.

re the iPad don’t be disillusioned. I’ve talked to lots of people on here about it and many say it takes absolutely years for their DC to take to it. One said her DC used to just ignore her modelling it! Deliberately… for about 3 years! We can only try and keep trying (not my forte either as I want everything yesterday.)

I also think @Ahna65 you would have no difficulty getting her a SS place here given her presentation (like my DS re communication etc.) I think it’s more challenging where you have kids who are speaking and so on and it’s then looking at behaviours, cognition etc to try and make an argument. Academic though if you not coming back to join us in the sunny UK!

Ahna that sounds tricky. I know what you mean though, if it is all play based learning, does it matter if it is called a school or not. As the others say she is so young and nothing is set in stone.

Carrie sorry to hear that you've been ill too. I had covid and then developed a chest infection. I have been ill all of October. Almost better now but still coughing and croaky voiced.

Sorry to hear about the sleep issues. I am so lucky in that regard although I have been up with DS since 03:30 but this is due to the clocks changing.

Half term hols going reasonably well so far...DS was at his SEN club for a few hours today and is there tomorrow too. I have finally got the new swing set put up in the garden (just in time for Winter!) It has been a big hit so far - only issue is stopping the DC to go out on them at 5am

Lydia well done to ds for swimming a length.

carrie & dimples sorry you’ve both been poorly for weeks. I hope you’re all back to normal soon.

carrie this is excellent news, I don’t remember you mentioning that ds has spoken before. Surely this proves he can?

We’re having a good break. Lots of downtime for ds but we’ve also been swimming, NT farm, shops and meeting friends and family in the coming days.

How are you all? We're mostly okay although DS is picking up some new vocabulary at school. He threatened to knife me yesterday.

Parents evening last week was not good. For a start, very poorly organised and then a lot of feedback was pretty negative (mostly about DS not working). I also learnt that he had been moved to a newly created class that day. They had told DS about this move before half term but had not warned me. Hopefully the new class will be better for him. It is more like a primary class with 1 teacher most of the time in the same room. He had been on a normal secondary schedule of different classrooms and teachers for different subjects. The only odd thing is the ratios though ...he has gone from a class of 15 with 1 teacher and 2-3 TAs in each class. Now he is in a class of 11 with 1 teacher and 1 TA.

Still chasing CAMHS so nothing new there

Hi all, just checking in - sorry I haven't read posts yet but will come back.

Lots going on here. Initial appointment tomorrow for DS2. I have a long form to fill in in German and I can't get it to print 🙄 We have moved, back in September, and I've managed to get DS3 (3) settled in Kindergarten so on track to start for DS2 on Friday. I will come back and write more about this in a bit - we have to go to the dentist.

Carrie I have forgotten what ADHD meds is your DS on? At long last we has psychiatrist appointment yesterday and DS is starting lisdexamfetamine at the weekend. Fingers crossed! The Dr was quite hopeful that we would see a reduction in aggressive behaviours

Sorry I’ve not posted much of late, all fine here so very little to report! We are also having a big house extension which is stressing me out. After Xmas we need to be out for a few months, but any lease arrangement seems to be a min of 6 months and it won’t be that long (please God!). Also tied to the kids schools and there’s very little rental on the market here so we have managed a convoluted arrangement which I need like a hole in the head tbh! I’ll fill you in sometime. I’m telling myself it’s short term pain for long term gain…

@dimples76 DS didn’t stay on the adhd meds for long, looking back I don’t think he actually is most probably adhd but I was desperate to try the meds. There is a standard stimulant that they start with, medikinet I think? x something? This made DS very hyper and I know Danni felt it didn’t work for them either. We then tried strattera which is a non stimulant and worked for Danni but for DS didn’t. DS isn’t aggressive so I’m not sure what I was hoping for really, I think more about a longer attention span but it didn’t yield that. From recollection there’s a third option but DS was too light for it, weight wise. There is a long running thread dimples on here about adhd meds you have prob seen it? The posters were lovely and I joined them for a short time when we were on that journey. Good luck with it and keep us posted.

Thanks Carrie. I will check out the thread that you mentioned. The home improvements and temporary living arrangements sound stressful.

@BertieBotts how did the appointment go?
@dimples76 doesn’t sound like a great parents evening indeed but hopefully the new class helps. It’s hard getting that negative feedback sometimes I take it quite personally but obv there’s little we can do really..
@carriebradshawwithlessshoes argh works always so stressful, hope it’s worth it. I’ve been a bit wishing our house was different lately. Less open plan maybe. When we bought it we were not yet aware of DD having any challenges and if I could choose now, I’d prioritise a space that we could make totally her own and safe, more privacy to worry less about the noise etc (detached I guess), but wouldn’t have been realistic where we live and now there would be complexities to move with both DDs daycare / school.

not loads of news here. Winter months are harder aren’t they! DD is such hard work inside, find it a real challenge. This week she’s broken the tv, pulled wiring off the wall, broken a blind and various smaller bits.

so far no luck with taking to the speech computer but I know it can take a long time. Have been told not to encourage compliance (eg if we know she wants a banana not to show her that to press) but just to use it ourselves to narrate what we are doing a bit. It’s a lot of work tbh !

2 2am starts so far this week which has been killing as DH has been away for work. We have been offered to try the respite care next week and see how she / we find that, think we will do that but obviously a lot of mixed emotions there. Have heard from people who used it that the kids enjoyed, it’s just a lot of attention and playing for them really and nice sensory facilities

Good luck with the overnight respite place Ahna.

Totally sympathise with the wanting to get out of the house more. One of my nicknames for DS is the blind-destroyer. We don't have any blinds left now. If I can't see him I really worry what he is doing. He is not intentionally destructive but is full of curiosity, impulsive and doesn't really seem to care about my feelings.

I am in the middle of swapping the DC's rooms over. DS is in his new room and loves it. He has the smaller NW facing room now and had requested black walls. I persuaded him very dark blue would still make it nice and dark and bought him curtains in the same colour. I think that he does feel more cosy/safe there. However, I now need to tackle the bigger room for DD (who currently sleeps with me). I hate painting but can't afford to pay anyone else.

Interesting re the dark. DD switches all the lights off all the tIme atm. It’s pretty irritating but I guess it’s coming from a genuine wish for a dark place or something!