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

Oh and good luck with the cinema @livpotter! We went last week to escape the heat, but I think we might go again next week as they fancy this Superpets one (haven't checked the reviews yet). We saw "Rise of Gru" last week which was formulaic but fun.

Light Yes we saw rise of Gru too. Not as good as the others but ds liked it. Ds was great, he needed to wear his ear defenders as he found it a bit loud when the actual movie came on. Afterwards he said 'that was brilliant mummy' and now wants to go to the cinema everyday!

I've told the kids we can go and see the super pets one next week. They both seemed to know all about it, not sure how, maybe ds saw something on you tube.

It was really lovely being able to take ds out to a new activity like that. Not sure it would have been possible even 6months ago.

Glad people seem to be enjoying the holidays so far.

We had a great time swimming, ds was like a little fish. We also had a lovely play date yesterday, however when we were leaving he suddenly ran off across the 40mph road outside their house and along the grass verge on the other side. I had to chase him down with one shoe on. I don't know why he did it, thankfully he was not hurt. From now on I will need to be very vigilant

Poor ds. He’s got these on for 8 weeks. Every 2 weeks we have got to get them changed.

I’m so proud he got them on, it was such a nightmare doing it but they are on. It took 3 people to hold his legs and do it but it’s done!!

Basically ds has been a toe walker since 14 months old (he can’t walk flat) so 7 years on, the toe walking is damaging (or already has damaged) his muscles / tendons / ligaments in his calfs , he complains about pain all the time and he’s been wearing orthotic shoes with steel plates in for years which don’t really help.

Monday we went to an appointment at orthotics and when I mentioned he’s complaining more of pain and tired legs the dr asked ds to show him we’re and basically ds pointed to every part of his legs, poor thing. The dr checked his muscles and said they have shortened more and it’s going to cause irreversible damage and he wants to serial cast him ASAP, so today we went.

He might need an operation when he’s older but for now we do this.

poor ds, summer holidays. He has these big fat open toe orthotic sandals and he can barely walk in them.

He chose army print bcos he wants a gun by the way 🤣

I have no idea how these are coming off in 2 weeks by the way, they need to use a circular noisy saw to remove them which will be completely impossible with ds.

So in actual fact ds might be keeping these on forever 😂😂

Oh no, poor thing! Those do not look fun but sounds like there is no choice really... Hopefully the camo will make up for it a bit! I guess the kids they are using these on must often be autistic, so hopefully they'll have some experience on the sensory side?

That sounds great re: the swimming and the playdate @openupmyeagereyes! The road thing seems scary - maybe he was just a bit overstimulated from the playdate?

Oh danni your poor ds, how has he been with them on? Has it slowed him down?

I presume these are to force his feet into the right position. What happens when they come off to prevent him reverting back to tiptoe?

Light maybe, I hadn’t considered that. Play date was very good but much longer than usual due to hols, these are old friends he knows well. Ds showed no signs of being upset or dysregulated though. That’s the sort of behaviour I would expect more when he’s in crisis so it completely blindsided me. Every day’s a school day!

Wow Danni your poor DS. Does he wear ear defenders? My DS sometimes toe walks but also walks normally and also does a duck footed walk - hopefully the variety keeps all his muscles working...

That sounds scary Open.

DS was very up and down today - it was DD's birthday. He spat in my face when I was helping him put on pj's after bath but just before the bath he hugged my legs and called me his darling Mummy. I am finding the roller coaster of his emotions a bit much.

My poor nephew is still in hospital with chicken pox complications, poor mite

Happy birthday to your dd dimples

Your poor dn.

@danni0509 your poor DS! Hopefully it will help long term.
@openupmyeagereyes sounds scary, possibly he was over excited and then emotional regulation becomes harder? Tricky.
@dimples76 happy birthday to DD. Its the rollercoaster of emotions that affects me too! Sounds horrible for DN, hope he feels better soon.
Glad the cinema was good @livpotter and @LightTripper. We tried a non sen regular showing recently and it was a bit of a disaster (I even found it too loud). We have been having a few park meets up but mostly relaxing around the house and garden. One more week until we go away! Then only two weeks to think how to entertain DS when we get back! I will miss him so much once schools open though, although he says he misses it and wants it to open sooner!
Well, its almost the weekend, so hooray for that!

Ugh, hideous night at chez open. Ds awake at 12:20 and didn't go back to sleep. He was also being very difficult so neither dh or I managed to get much sleep despite taking shifts. Dh gave him another melatonin tablet but it didn't help. He was awake at 3:30 yesterday too. Thankfully our neighbour has been away this weekend, so that's something.

How is ds doing danni?

I hope everyone has had a good weekend.

I hope last night was better @openupmyeagereyes

Susan he slept until ten to five which was great after the previous two days. We skipped the melatonin as I knew he was tired enough to fall asleep without it. Dh and I went to bed early too, so a much better night 🙏

Hello all, I’ve been reading your messages avidly I just haven’t had a chance to post much! Glad everyone is ok! Open, glad DS slept better and well done with your one shoe race!! I sometimes think I can take my eyes of DS then realise I can’t. Danni, a friend of DDs toe walked and had similar to your DS, it completely corrected things so fingers crossed! Liv and Light, thank you for restaurant recommendations/ thoughts I’ll see what happens! Dimples I had been thinking about DS and his seizures, did you mention the chronosphere? Are they any better?

we were on the South coast for the heatwave which was just fab, really like being abroad. Went to the beach most days etc. My punishment now is of course that I’ve 6 weeks school hols to contend with! Only week 2, work is manic and I’m struggling! For those of you with children in SS do they do summer clubs etc?? I looked at DSs, I’m not sure they do but as parents get too old to help I’m not sure what I’m going to do other than pack in work in due course??!!

The holiday was lovely but a couple of odd things happened, have your Dc ever fainted? DD scared the life out of me by keeling over unexpectedly then DS 2 days later did they same. Neither have passed out before! Don’t you think that’s odd? Otherwise both are well. I’ve fainted as an adult but never as a child. Obv with DS I panic it will lead to a fit but fortunately did not.

I remain really envious of your stories of kids playing together, open I think you mentioned your play date and liv your 2. I think it will never happen with DS and that makes me really sad for DD. As I’ve written before DS has no interest in toys or even ‘things’, he shows no spontaneity in picking anything up to engage with it. Which really leaves activities like swimming and the like but he gets so engrossed it’s like he’s completely in his own world, so no 2 way interaction during those times. Not sure what I can do about it if anything.

the new school wrote and said they placed as much emphasis on social skills/ peer groups as anything else, so there would be a real push to find a peer / peer group for DS in Sep. That sounds wonderful but they will have their work cut out.

Otherwise DS is happy pottering around with me and family, trips out and about (exciting and less so like the supermarket.) I’m with Danni that come Sep I will be glad for someone to step in and hopefully make some progress with him . I do hope I’m not placing too much hope on what this new school can do!

Glad to hear that you had a good hols Carrie. That is odd re the fainting. Neither of my kids have fainted. Was it when it was v hot? When I started secondary school one of the first things we were taught was to be ready to catch someone fainting in assembly - they crammed far too many kids in the hall and someone fainted nearly every assembly. Crazy when you look back - actually to be fair, I remember even aged 11 it did not strike me as sensible.

Since the dose was increased the Epilim is doing it's job. We have another appointment in September.

DS is getting much better at articulating his feelings. At the weekend there was a foam party at the play farm which DS was initially attracted to and then calmly told me that we needed to move away as it was too loud and crowded- in the past he would have just screamed. I felt a bit sad this morning though at the post adoption support therapy session he was drawing a picture of his 'muddly feelings'. Scribbling furiously, he made a picture of his 'fireworks mood'. The therapist asked him how felt in fireworks mood and he said scared. But when she asked if Mummy could help him when he felt scared he said no. So I think that these are very positive steps forward but I still don't know how to help him.

I'm not sure if it's relevant @carriebradshawwithlessshoes but DD did pass out a couple of times when she was little. Both times were kind of meltdowns where she held her breath until she passed out I think (though they were before the time we knew she was autistic so I'm not sure I ever made the connection). She was probably 3 or 4. Both times they kind of came out of nowhere (i.e. it wasn't obvious that she was very upset about something in advance - though after the event when we were told it might be breath holding it kind of made sense that something had upset her). One time at home and one time scooting along the street back from a local pizzeria we sometimes go to.

I remember it being really terrifying! She did go white/grey but as soon as she'd actually fainted the colour came back, so no need for ambulance or anything, and she came back round within 30 seconds max (probably faster though it seemed a bloody long time!)
www.nhs.uk/conditions/breath-holding-in-babies-and-children/

That does sound a very constructive therapy session @dimples76 and good that he was able to tell you the foam thing was too much. It must be hard to hear that you can't help him, but I do think letting other people help is a whole additional skill and particularly hard for autistic people - pretty sure you can't do it until you start to understand your feelings yourself, so hopefully he is on a path that will take him towards being able to let you help more and find ways together that you can do that as his understanding improves.

Thanks both. Your description of DD is absolutely spot on. With DS I did wonder about this… he’s v constipated and the moment and holds his breath to try and not go. His diet is amazing so I don’t know why, for those of you with kids with limited diets how do you manage? (Side issue?!!). The other thing is neither are big drinkers DD in particular. She can go all day without drinking. So poss dehydration I did wonder.

carrie glad you had a good holiday and were able to enjoy the hot weather. So much nicer when there’s water and a sea breeze. Hopefully ds will make some friends at his new school, being in the classroom will help for a start! When he is just at home, how does he spend his time?

dimples it’s tempting but don’t read too much into it. Possibly it’s because he doesn’t know how to help himself, or can’t articulate it, therefore doesn’t know how you can help him. Being present and responsive to his needs and feelings goes a long way. I think it just takes a lot longer with our kids, like lots of other things. Great that he’s starting to talk about the why though. It’s definitely a breakthrough.

Light I once worked with someone whose toddler daughter held her breath until she passed out. She said she used to do it when she was little too.

Things are going fine here. We went swimming again yesterday which was fun and meeting a friend at the park this afternoon. Ds has woken about 4:30 the last couple of days which is pretty standard for him. I’m still waiting to hear re. DLA, it’s probably going to be another month or so given the threads on that.

Oh, and carrie ds’ school does not yet offer a holiday club though I know other ss’s do and they open to dc who aren’t pupils there. Some can be £180 per day though which is ridiculous.

Ds is pretty regular once a day despite his limited diet. He has never had any GI issues, though had a phase of tummy pains for a while when he was much younger. I used to do a baby colic massage on him when this happened, and I think we saw the GP who didn’t think it was anything to worry about.

Open this sounds mad but he is often happy Judy to be around people.. so he got up with morning and came and watched me make breakfast. SIL popped over he greeted her with a hug and just wanted to sit with her on the sofa holding her hand smiling at her as she chatted to me. He then gets a bit silly and wants to climb on people so I tell him to get down. We have a piano and he will often take himself to that and try and play (quite nicely) or like today he has come out into the garden and is happy pottering and has just jumped on the trampoline where he is bouncing away and grinning at me as I’m typing.

DD has just got on too and he’s smiling and bouncing with her. But if a child got out a game I don’t think he would really have any interest or like his OT used to say he ‘doesn’t see the point of it.’

Just

Equally he will say kick a ball but if another person kicked it to him he would ignore it. He has no sense of 2 way interaction I feel in many circumstances as much as he’s happy to be with people and generally be around them and integrated in what they are doing.

Hi all! How's everyone doing? I am packing for holidays tomorrow and generally overpacking stuff haha! Re holiday clubs, we don't have them here either, although I think DS would struggle somewhere new with new people etc just for a few weeks. I changed my job so I get school.holidays off, which helps. It's nice to spend the time together too. Other parents of kids in his class and beyond have organises some meet ups, which have been great, and we've managed a couple of days out with parents with kids of similar ages with sen, which I hope has kept him socialising a bit, although he's always really tired and wired the day after a social day (me too, if I'm honest!)
@carriebradshawwithlessshoes for my DS, he will now finally do joint play but only on his teems otherwise I think he sees it as a demand so avoids it. So if I kick a football to him, he ignores it and mutters about it not being time to play football right now, whereas then 5 mins later he will kick a ball over to me saying come on mum, it's football time now. But if I try to initiate it? Not a chance!! We have been watching the Commonwealth Games and he has created his own version with all the countries competing in different events then adding all the scores up. But it has to be on his terms. Is there anything your DS is really interested in? Like mine at the moment is obsessed with racing. So when he starts lining up the pens or whatever to race, I get involved with his world and come to him on his terms. Its hard though sometimes as it's quite repetitive but I can tell it means a lot to him that I'm trying to get into his world.