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! We are pottering along. Saw some Xmas lights trails recently and went to a local archaeology site for an Xmas event, went to a new exhibition today, and now chilling out! DS has a great term overall and I was doing well with my weight until I hurt my shoulder which has made running harder. DS definitely getting more and more excited every day which leads to a lot more big energy, which I find can be dysregulating for me, so trying to breathe lots!! Overall though he is much happier and calmer now he's a bit older and the early puberty seems to be settling for now. I have been working on gratitude lately and trying to consciously be thankful for what I have. I find it helps me to live in joy and peace rather than fear and anxiety. It is definitely an active conscious shift in how I approach life but I find it helps with my regulation and wellbeing. Xmas day will be at home trying to keep everyone calm and happy, before we go for a couple of days out and then spend New Year at home this year. I hope it all goes ok for everyone!

@openupmyeagereyes i keep forgetting to ask, do you think DSs sleep has improved with age? What does he take and when ? What is his usual sleep pattern, does this change at weekends/ school hols? Still a huge issue for us, worsened as he came off one sleep med with the adhd meds. Currently he’s in bed for 10.30 after melatonin at 10 ish but then up all hours.

last night was furious and told him to stay in bed which he did but still chuntering at 3am , 8am… after being up at 1am… just ridiculous..

carrie I think I posted earlier this year that it was improving but, of course, that was the kiss of death and immediately it just went back to normal. Overall it is improved in that we have fewer pre-4am wakes compared to when he was younger. He still usually wakes between 4-5 most of the time. If we get to 5 or later we’ve had a decent night. The other thing that’s different is that if he wakes earlier, most of the time he will stay in his room until 5am. He has 4mg of slow release melatonin at 7 and goes to sleep at around 8:45.

I keep praying that teenage hormones will kick in!

@openupmyeagereyes do you feel from your observation it takes 2 hours to make him sleepy? I think I have asked this before but have you played around with those times, so for eg we would always give it to DS after 9.30 if we wanted him to ‘sleep through’ ? In essence atm it seems to keep him asleep after taking for 2/3 hours which is no good whatever bed time is!

does he not wake after that amount of time, ever? So if he’s asleep at 9 that would mean waking I guess at 11? Which is presumably before you have gone to bed!! Or midnight? Does your general activity not wake him? DS is so sensitive that at that time even us walking around, TV downstairs, toilet flushing etc would have him up…

sleep is supposed to get better with age so it’s frustrating. Mum was showing me recently a video where i had left DS aged 3 at hers overnight. She’s talking to dad in the background saying DS had not gone to sleep until 4am, even then!!

I know Ahna and Danni used to say their DC were fine the following day but DS is not. Today we went out for a drink to a new restaurant near us at 11am (just a coffee) and DS literally fell asleep on the table after whining all morning and he’s whined all afternoon. The bar man was like… right, someone’s had a good Christmas…?!

carrie he rarely wakes around 11ish. Occasionally he does but he tends to go to the toilet and then back to sleep relatively quickly. If he wakes after midnight it’s more tricky and can take longer to go back to sleep. If he wakes 3-4ish he’s awake for the day. Dh and I are early to bed as ds is up early. Even without melatonin he’s usually asleep
around 9ish, not much later.

Happy New Year all!

Sane to you @LydiaBennetsBonnet and everyone else!! Hope all is well 🍾🍾

Happy New Year everyone. I can’t believe the holidays are almost over! 😭

Do you all feel that term times are ‘better’ … or not? DS has been great this holiday and it’s been nice having chilled times, not worrying about bed times/ night wakings as there is no rush to get up on a morning. No stress about shitty reports from school or worries about how the day has gone. I really, really don’t want him to go back to this school but there is no other.

That all said term time does give me time for me… and I feel it’s sometimes more enjoyable to spend time with DS after school when I’ve not been with him all day if that makes sense? Open, is DS at school full days now?

so a confusing mix of pros and cons!

Currently googling new haircuts!! Wondering how brave I dare be 😂😂

Happy New Year everyone!

Hols have been reat here and dreading the return to school. That said DS definitely needs to go back as currently his main interest is playing with himself. Yesterday I called him down for tea and said we can eat in.the living room whilst we watch Flushed Away (one of our fave films but leaving Netflix in a few days). All very nice and cosy. However, as soon as DS finished eating his hands were inside his pj bottoms. I reminded him that it is something that should only be done in private. He then announced he was going to his room and I couldn't get l him to come out for the rest of the evening. Any ideas?!

I meant to add @carriebradshawwithlessshoes go for it! I turn 50 in May and I am planning to change things up then

Yikes dimples. We haven’t hit that phase yet but I feel it’s only a matter of time…

carrie ds is the same term-time and holidays, except for the tricky transition in the mornings getting ready for school. He prefers the holidays and so do I.

Hi everyone and best wishes for 2026. I've not been on here much although I do read updates from time to time and am glad when things are going well.

@carriebradshawwithlessshoes really great about the continued progress with speaking! Long may it continue for you.

We've been having a rough time to be honest. Sleep is a key part of it. Finally managed to get slow release melatonin from abroad - huge battle to actually it down here as despite the tiny pill size if she wont eat anything that she's not chewing on it's just really difficult. Anyway eventually managed with a combination of methods including a special pill cup. Tried it about 4 times and it made no difference at all maybe even worse for the night wakings. So giving up on that. Mid referral to another doctor to see what else we can try. She's up 5 or 6 nights a week from midnight to 5am or similar. It's really killing..

apart from sleep (or maybe linked to), general behaviours pretty difficult too. WInter is always hard with her which doesn't help. But quite often messages from daycare / nannies saying they cant stop a meltodwn / can she be picked up early etc etc. Feels like the support system is getting smaller and that there are not really other options available to us.

@dimples76 re the touching I do think this is common, even in very young boys. I remember a group of work colleagues discussing this re their boys and this was way before I had kids, I kind of get why DS will hide out in his room if he thinks he can do it there. Maybe daft suggestion but can you just tell him no, it’s not appropriate and leave it there? DS does it sometimes almost without thinking and this is how I respond and he stops. What he does in his room I can’t see or control (within reason) but in public I can… in the same way as I’d respond if he started taking clothes off or picking his nose or scratching his bum or similar? Just a thought and what I do!?!

@Ahna65 that sounds very rough I agree. I have not heard that response to melatonin… is she taking it correctly (not crunching) and is she taking enough? What dose have you tried? DSs paediatrician says DS could go to 8mg if nec. Do you have a medical contact/ dr that you can discuss with? As you know there are other things… alimemazine etc. It seems odd that the NL seem very ‘on it’ with their genetic tests and the drug you were prescribed as an up coming treatment (is DD still taking this?) yet can’t advise and recommend and prescribe basic sleep med? Also in terms of behaviours as these boards show there are a whole host of meds, be it adhd, ADs, anti psychotics which parents are prescribed to help their DC and which can be super effective even game changing for families. What are your medical team doing/ saying? Surely they must be open to prescribing something for DD along one of these lines? I am absolutely no expert but so many posters on here write about how various things have helped DCs behaviours! Do you tell them how bad it is?

As for school ringing you I’d tell them to suck it up! As I understand it she’s placed somewhere where they are used to/ should be experienced in behaviours of DC with SEN at the most challenging levels (I would have thought much worse than DD!).

Hope half term has gone well! We have had a lovely rest. Went to London and swimming but aside from that, lots of time relaxing at home which has been lovely. Back on Monday but only.5 weeks until holidays! We are going to the Isle of Wight. Just booked the ferry, so excited. I also booked legoland for DR'S birthday I can't believe he'll be 11 this year! Hope everyone is ok.

Pretty low key here but nice. Ds is not happy about going back to school tomorrow but hopefully I can get him there with minimal fuss. We have 5 weeks until the Easter break too.

I hope everyone else is ok.

Hi everyone, we are just at the start of 1/2 term hols here. Both DC seem to be on pretty good form. DS even held DD's hand when they went to queue up for the slides at the swimming pool yesterday - very out of character.

Main challenge is getting out of the house, DS wandering around the house naked playing with himself, and shouting lots of abuse at me. However, and I hardly dare type this...physical aggression is much reduced.

Didn’t realise half terms varied… we too are just finishing ours and have just got home after a mega drive from the south coast where we have been for the last 8 days. Had a fab time although my expectation that southern weather is always better than the north absolutely failed me as it was for most of the time rough! DS has never worn as much waterproof stuff, DD floating around dabbing her mascara and moaning it was getting smudged 🤔. But we had a lovely time and DS very happy and chilled. I think a lot about how I would really love to live somewhere coastal, I enjoy everything about it and DS is so much more regulated in that environment. Unfortunately we are miles from water so it is what it is (for now at least.) Both kids (if not DH) share my love of seafood so have scoured some very nice fish markets too this last week! Need now to eat less and drink less… done far too much of both this last week!!

@LydiaWickhamsBonnet IoW will be great, we often go to Southampton and get the day ferry over (with the car so can travel around.) Have done some great walks there. You will have a fab time!

Glad @dimples76 things are going well, @openupmyeagereyes too!!

My only negetive atm is I’m trying a probiotic for DS, much hyped about. Overall I’m pleased with the results, he seems a lot calmer and it’s really helped his constipation. Also much better mood wise, would sit nicely for meals on hols and not whine as soon as finished etc. But it’s buggering up his sleep (well I assume it’s that…) up for hours and he will stay in bed but I can hear him fidgeting and tossing and turning. I’m worried how much restorative sleep he’s getting and mine isn’t great either!! So not sure. Unless it’s unrelated of course.

I think that it's just my area which is out of kilter with everyone else. It is quite helpful at Easter - we've booked a group of cottages in the Dales and the rates for the 2nd week of our hols (when most places are back) was much cheaper.

@Carrie What is the probiotic that you're using? My DD suffers with constipation. I think that she probably has ADHD too. She feels everything very deeply and seems to have a very low pain threshold. I worry that I might miss something with her as every day there is great distress about some pain, eg dry lips, a tiny scratch etc. DS is the polar opposite - I can imagine him walking around seriously injured and not really registering it. I am taking DD back to the GP's in case there actually is something I am not seeing here.

@dimples76 its an asd one… Aspire 5 in 1. Has great reviews but this is DS who can turn anything on its head….

Has dd had movicol? My DD suffered too and was prescribed this. DS was also prescribed. I’ve spoken to a lot of people whose kids are constipated I think it can be v common, all have been prescribed this (or move along as DH annoyingly persists in calling it!). Dales will be lovely and yes, great when the school have a slightly different schedule so that you can take advantage of a better price and less crowds!!!

I a

Ooops… I agree re the pain, DS is like yours. Frequently I get from school ‘DS has fallen down the stairs/ bumped his head/ cut his knee/ bashed his eye but he didn’t seem bothered…’.

DD has been on Movicol in the past. We had been fine for quite a while but it has recurred. I think it's very much withholding and partly caused by her low pain threshold. I am reluctant for her to go back on movicol as it seems to work very dramatically on her and it lead to a lot of soiling (which she would be upset about) but unfortunately I think it is probably needed.

Can you try just a tiny amount? The good thing about it is it’s easy to control how much is given…? Hope you get it sorted Dimples