Primary School Auties 10: Summer and beyond 2022

[LightTripper]

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

Just wanted to say that everyone's shared experiences are really helpful - both practically and emotionally - even if we aren't at that stage yet, I'm still squirrelling the info away (assuming my ageing brain retains it for that long!)

Hi everyone, I meant to write a couple of days ago but things got in the way. Agree the relationship strain can be really tough. Generally I've been more pessimistic / worrying about things relating to DD's schooling, future etc and DH more glass half full. That can be frustrating but equally I try to tell myself it's good if we don't bring each other down. It does mean I can be the one driving things that we should be doing / reading / etc etc and he's more passive 'what will be will be'

In terms of relationsihp dynamics it does have such an impact. The tiredness especially is a killer. And the no 'evenings off' without DD being awake / melting down etc. But I do find it also makes us a bit more of a tighter family bubble, we generally prefer to keep to ourselves e.g. Xmas, holidays etc - it doesn't seem to work well to involve other people.

In terms of time out we do seem to take it in turns - I have a fair amount of work events that feed into evenings etc and although it's work it is also a bit of social time for me, sometimes some nice food/ drink etc. I also do a bit of exercise when I'm not too exhausted. He will see friends occasionally but we don't really have a combined social life (I don't really have one outside work here, being newish to the country and haven't really tried at all tbh). It is a shame not to get more shared time off together but it's not a phase where we'd leave DD with someone else, meltdowns way too intense

DH has just announced to me that he's taking the 2 DDs to his mum's tonight (about an hour away) so I can sleep and relax. It is definitely welcome as we've had a run of 4 hour nights in a row with the melatonin and I also had a bit of a killer work week so far. But at the same time I feel a bit sad being home alone on a Friday night!! I'm sure I will enjoy it when I find some trashy TV and have a glass of red on the go.

Ooo sounds lovely Ahna, do make the most! They will be back tomorrow!

light, sounds like you have a great arrangement with OH, I do think differing views compliment each other sometimes iyswim. I did smile when you wrote you aren’t in a romantic relationship, DH would say he isn’t either 🙄🙄.

happy weekend all! dS on a bloody teacher training day so off swimming….

Has anyone else been part of a case study. I had a very rare pregnancy complication. My friend showed me a case study today which had to be me as I was told at the the time that my complication always resulted in premature birth whereas I was two weeks overdue (also the authors were my medical team)Feels very weird to see my pregnancy broken down in detail but hopefully will be helpful to someone.

ahna I hope you enjoyed your night to yourself.

carrie I think sex can be the first thing to suffer when you are tired and stressed. I hope swimming was fun, we haven’t been this week as the pool was closed and I cba to try a different one.

glitter that must have felt very strange. I hope there were no worrying surprises in it.

We are doing ok, had a nice morning out yesterday which ds enjoyed. We had a hideous early start on Friday (1am) but otherwise he’s been up between 4:30-5:00.

I also meant to post what ds said to me one day last week. He said that the reason he doesn’t always reply is that sometimes he’s in his imagination which I thought was really sweet and useful information. It feels like we’re starting to get bits and pieces of insight from him. In the same week or so, he’s also told us in advance that he feels angry enough to hit, but hasn’t, and after a while of being annoyed or stressed out about something has made the conscious choice to move onto something else rather than continue to escalate. It feels like we’ve turned a bit of a corner. Next step is to discuss with him (when calm) what other physical outlets he can use instead when he feels like he wants to hit.

@glittereyelash study sounds like it could be an intense thing to go through. What are they trying to research from it, more about the condition you had?

@openupmyeagereyes love that imagination comment.

Friday night for one was very pleasant. But a meltdown filled weekend since. DDs haven’t slept at DMILs for a while, maybe that didn’t help. Melatonin continues not to be the answer we’d hoped on the sleep - we upped the dosage per doctor instructions but to no effect. Right now she’s having a horrendous meltdown, sitting with her but feel there’s nothing I can do usually.

Hope everyone else is sleeping!

Sounds good Open!

Ahna, did DD sleep at mils? If you are wanting to stick with the meds slow release melatonin is a must. When you say meltdowns, does she wake and then just cry? We had hours of being up in the night but it was silly/ hyper/ manic behaviour rather than upset (arguably no better!). I wish someone had introduced us to Alimemazine earlier. If he’s had a busy day he sleeps 9 til 8 now and is so much better for it (as are we).

Do her meltdowns have a trigger? I can’t say DS has meltdowns as such but his general up and down behaviour/ moaning is very often not, so far as I can see, triggered by anything which makes it very hard to predict. The words of one therapist stay with me… ‘children don’t cry for no reason.’ I’m not sure with DS if that is true.

@carriebradshawwithlessshoes yes, she slept at MIL's (DH did too). She does have a bed tent which goes with her so I had hoped that would give some 'normality' - hard to say if the change of routine had an impact on the meltdowns as she does have them at home plenty too.

I think that there is a big sensory component but it is pretty complex to figure out. She can have a day of loads of running / hanging off bars etc (she seems big on both vestibular and proprioceptive) which still ends up in meltdown or a more obviously understimulated day which goes the same way. I have the sense she struggles with the sensation of being tired when she can't switch herself off to sleep.

Slow release I think is impossible right now bc there's just no way she would swallow a pill (she's only 3, and it's hard enough to get her to eat the food she likes !)

In the night, when she wakes it usually starts as a bit of a whine, or chatting / singing / clapping / laughing, but progresses into meltodwn that is just total hysteria with nothing we can do, usually for 45min- an hour. Last night this phase wore off by about 4am and after that she was like you say, manic and hyper - running around. She stayed up from 2am-0630 when she finally went to bed for a couple of hours.

Feeling pretty broken and depressed by it all today.

How were other weekends?

Sorry my bad wording, I meant did she stay asleep at mils? How was her night there?

I understand, that’s the period DS would be up too. You must be shattered. Alimemazine is a liquid, a possibility?? Does changing bedtime help? Even pre meds I would find he would sleep through if he went to bed very late. Not ideal i know but a 8pm bedtime guaranteed a 1am wake up.

I think personally the whole sleep thing revolves around how you and DC function on no or v little sleep. It absolutely breaks us so we just had to find something. I’m sure it’s out there but you have to be prepared to push and then play around.

Oh and yes, wkend was fine thanks. Teacher training Fri so we had a good swim session, then yesterday went to the coast which is a good 2 hours drive for us so we don’t do often, followed by dinner out with the IL (they have a second property there so were over there at the same time as us.)

DS was however this morning a miserable little so and so going to school, wouldn’t make eye contact with his teacher when I dropped him off. Looked v sullen etc etc. I suspect in reality he would rather not be there but then who would?! 🤣

@carriebradshawwithlessshoes Aww, sounds like DS was feeling the MOnday morning feeling! Coast sounds good, does he like the beach? DD loves it. We are lucky to live close by. Just a challenge to keep her out of the sea... whatever the weather

She slept at MIL's until 3am. DH got up with her and then MIL swapped at 5am. Think she then slept all weekend poor woman, she's too old to be doing that really. Yes, I am mostly OK with limtied sleep but of course we all have our limits. It hits DH harder I think, but then it sometimes becomes almost competitive / sniping at each other which I know is so unproductive. I did just order some magnesium spray as heard that could help - she seems to get restless legs sometimes... anyone tried?

And yes, think we need to nudge bedtime. It is a shame not to have an evening but then having an evening where she's wide awake / distressed in the background is also crap. Think will aim for 2030 and see how we go.

Yes tried the mag spray and cream and mag supplements also. For us it didn’t make a difference. Agree about the sniping, that’s us too!

Open that's amazing ds is starting to be able to describe things to you. That seems like real progress!

Ahna we tried magnesium spray with ds but he hated the feeling of it. Try it on yourself first because it can sting/make your skin feel tight particularly if you don't have enough magnesium in your system apparently. You can try Epsom salts in the bath as an alternative but I'm not sure what kind of difference it made to ds's sleep in reality. Melatonin works for ds but with him it was never a problem with staying asleep but getting to sleep in the first place.

Your dd sounds very like my ds at that age. 3 was such a challenging time for all of us. I agree as well that unpicking sensory stuff at 3 is really difficult! The only thing I can say is it has gotten better with age and ds's ability to express himself.

We had a nice weekend. I took the kids to see lyle, Lyle crocodile in the cinema, which they both loved. Otherwise it was very quiet here.

@ahna68 we're very lucky we've never had sleep problems so take this with a massive pinch of salt - but if she likes the sea could some kind of sea noises be soothing if she's awake and finding it hard to wind down? I always fall asleep much better with some background noise, and I've noticed when DC are having difficulty (e.g. if we're on holiday) putting a very familiar/non scary audiobook on often helps them drop off. I realise your DD may be a bit young for stories - but maybe something auditory can help as a distraction? Of course it may just be more unwelcome sensory input - it's so child-specific!

We had a meltdown this morning - first one for ages. It was because we couldn't find a badge that DD has for school. It's interesting how much difference it makes that she understands herself better now, because she was able to explain that it's because she uses it to rub/stim during the day - when she was younger I would have assumed it was the badge itself that would be worrying her, e.g. worrying about the teachers telling her off for losing it, or that she would lose the status that goes with the badge - but actually it's nothing to do with that. I'm not sure how much it helped practically (I suggested some other things with a similar feel but none would do and she said they would remind her of the absence of the badge), but at least I didn't waste words trying to explain away worries that weren't actually at the root of it at all. It took a l-o-o-o-ong time to leave the house and we were a bit late for school, but once we'd actually left the house so the possibility of finding it was gone she actually seemed to re-regulate OK.

Of course now my house looks like a bomb hit it (also because an entire bottle of water for DS exploded inside my work bag while I was hunting for the badge - wahh!! I think actually watching me have a meltdown about that somehow helped DD to regulate a bit as that was the point she decided we could leave after all). So anyway, I have a big cleanup job to look forward to when we get home later!

And @openupmyeagereyes that sounds brilliant with DS. So great that he can understand what is going on and explain it to you! It makes parenting SO MUCH easier.

Nice weekend here, feeling a bit glum that it's Monday again! Had a nice potter round town on Sat and DS got his hair cut without a massive palaver then we went to a chilled out sen friendly event yesterday.

Re sleep, yep I feel you! DS now has over the years devised his own bedtime routine where he goes up to bed at 6pm, then bath, games, books, until eventually the light goes out about 9pm!! If I try to rush it, he just gets anxious, so it's not worth it but I'm not often down before 9.45. We don't mind though really, DH and I have an hour or so together then go to bed. The kitten us usually waiting for a cuddle in bed by that time too!
We have started reading the Harry Potter books, which I'm beyond excited about as it's great to share them with DS, although we have yo be very careful to stress that they are made up!!

Susan, are you still taking Ds to school? What went wrong with transport? I can feel the 3.45 moan coming on again here….

We have been having a rather horrific time. Last week my nephew (one of my sister's autistic twins) was rushed into hospital with a severe asthma attack. He went downhill fast and the medics started discussing moving him to the regional hospital ICU to put him on a ventilator. Whilst the team were discussing options he started to recover slowly - the consultant described it a 'bloody miracle'. He was actually sent home yesterday. We're all still feeling v worried as until a fortnight ago we didn't even know he had asthma- this was his 2nd attack in a week. Poor DN has said that he is too scared to go to sleep in case he dies.

I tried to keep a lot of this from my children but I have not been able to sleep and locking myself in the bathroom to cry. So I am sure that they'll have picked up on stuff plus I have been looking after my sister's other children a lot. DS's behaviour has been tough to manage - spitting, screaming, hitting, pushing, kicking a hen and a dog. Yesterday I just wanted to see DN (wasn't allowed to visit hospital due to Covid rules). Due to the way DS behaved at their house I only got about a minute with DN. I can understand where the behaviour is coming from but yesterday he really pushed me to my limits. Even though the immediate danger to DN has passed I feel v tightly wound and exhausted.

Sorry for the pity party

@dimples76 oh my word, your poor DN and all of you! I hope everything goes OK.
@carriebradshawwithlessshoes yep I still am, we had issues with different drivers and pas turning up etc and DS has been generally happier and more regulated since we stopped the taxi. Now he knows us taking him is an option, he's not keen at all on the taxi, and I'd rather do it myself tbh.

Oh dimples, not a pity party at all. What a horrible thing for you all
to go through. Glad dn is home and recovering, can you see him
while yours are at school?

We’ve had a rough day. Ds seemed fine but completely dysregulated after going into school and was only there about half an hour. We had a tricky time at home too until early afternoon when he had a cry (rare for him) and then settled down. He also had a dental
appointment which went well. I’m tired and rather emotionally spent, looking forward to bed. On the plus side it seems to be easier to talk to him about things but it’s going to take time.

Sending sleepy vibes to everyone, tomorrow is a new day!

dimples that sounds awful, hope DN is ok, how old is he?

wondering also if DSs total dysregulatiin after school is linked to the bus which is why I was picking your brain Susan on that. Was there a bus for your DS, would he have stood it? School are saying they are not seeing this behaviour at school but on the bus home he seems to be just losing it! Not in a terrible way but just screaming and laughing and being silly. Takes ages to calm down when home. Of course his audience on the bus are all Sen kids many of whom clearly have noise sensitivities so DS is causing havoc. If it’s such a big deal I’ll pick him up.

@ahna68 my friend is in the medical profession and was doing some reading and came across my case. I had surgery before my little boy was born which usually resolves the issue but didn't f6or me so I needed additional surgery at five months. I wish I had advice to offer for sleeping. All I can say is we keep our guy so busy he's exhausted by the end of the the day . We've often had him in four different parks by 11am and bring him for 2 hour walks regularly and he sleeps so well.

DN is 10, in yr6 at same school as DS. DS used to hero worship him. I'm in work tomorrow so won't get to see DN but hopefully when I am off on Wednesday with DD we can visit. DD adores DN - they seem to find each other very funny.

DD received her first party invite today - I don't know any of the nursery parents but I guess I have got to start somewhere. My family are not exactly falling over themselves to look after DS though whilst we're at the party.

Hope that all your little darlings are sleeping peacefully.

Carrie how many are on the bus? Open hope that tomorrow is better.

There are about 15 on the bus dimples, all older than DS (I’d say more mid secondary age), all sitting there quietly and perfectly when the bus pulls up. DS has no issue with stuff like this so I don’t know why he’s going so giddy and screaming etc. advice was given upthread to ignore if he is doing it to seek a reaction (I’m not sure if he is or if it’s just showing he’s disregulated) which I think is right, but to the contrary a lot of the kids are clamping their hands over their ears (they are like this when the bus pulls up) and reacting to DS, so is it giving him the audience he wants? Who knows. I suppose if it’s that bad they will have to offer a taxi or something. As I’ve said, it’s not ‘bad’, he’s not hitting, spitting, being violent or having a meltdown, it’s probably more annoying than anything (plus he’s only on 10 mins) but to the other kids it may be bad.

that’s interesting that your DN has remained and managed so well in MS Dimples. Until this thread I noted the statistic (optimistically) that most autistic children are educated in MS settings yet most of ours aren’t, are they, or we feel if they are MS is failing. I often wonder if whether it works or not in MS is down to the child or the school or both.

we are due a parents eve next week so I’m curious as to what they say. Teacher has already said that although DS is growing in confidence each day she still feels he is settling in and finding his way. I think that’s probably right. I do find DS confusing in that he can fluctuate so much in his presentation, he’s always thoroughly confused professionals. He can meet one one day and refuse to engage and then be completely charming and highly engaged the next day. One day he can be bouncing off the walls, the next very lethargic. Just when you think you have got to know him he does something (for no obvious reason) completely contrary. Even school say they don’t feel they ‘know’ him yet. I’m not sure his old school ever really worked him out in 2 years. Do any of you find this??? It does make life quite unpredictable for everyone. I find myself going from having my head in my hands several times a day to then thinking he’s actually behaving not far off a NT child save for the speech! And not for any identifiable reason.

anyway I digress… have a good day to all.