Primary school auties : spring 2021 and beyond - thread 6

[danni0509]

Hi. New thread.

This is the continuation of the thread for parents / carers of autistic children / children with additional needs. Most of us are parents of children in year 1 / year 2.

Links to old threads

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

Everyone welcome x

liv sorry, do you think it’s because school was shut?

We’ve had a good day today, despite the no school. He had a great afternoon with a friend. Bedtime has just become a pain though. He finally went to sleep at 9:15. He won’t sleep later, of course.

danni hopefully you won’t need to move the AR. I agree, 50 minutes is probably not long enough, especially at the moment.

We have only just got DS to go to sleep @openupmyeagereyes. Sleep fighting all the way!

Magrat it sucks. A control thing IMO

@carriebradshawwithlessshoes your therapist reminds me of a Floortime person we went to see early on (and I love the idea of Floortime, I think we just got unlucky with the local person who does it!) She came to visit us at home and DD immediately (understandably) hid under the kitchen table. I let her get on with it while I made the lady a coffee because I know DD takes time to warm up and harassing her when she needs a bit of alone time just makes things worse. DD did indeed warm up and play/interact with the lady later perfectly nicely I thought.

Anyway, we then went to a parents-only session with this woman and it was all about how I needed to connect more with DD because I hadn't immediately dived under the table with her (OH was also there, but for some reason he was not supposed to dive under the table ... I guess it's a girl thing??), and DD was probably autistic because she was induced and/or because I worked.

That was not the best hour of my life. And we paid her for the privilege of listening to this shit!

Gosh, hadn't realised I was still quite so angry about that. There are a lot of awful charlatans about. I'm sure some of them think they're acting in your best interests.

Anyway, in terms of game playing there is a book that we found quite good when DD was little - we got it from the library so may be worth seeing if yours has it?
www.worldofbooks.com/en-gb/books/tara-delaney/101-games-and-activities-for-children-with-autism-asperger-s-and-sensory-process/9780071623360?gclid=CjwKCAjw87SHBhBiEiwAukSeUXJgnERmV28E14xuKknznCQLOj6WdPyOX5nFS29t5xepMXgUz5VQjxoCA0cQAvD_BwE

Nurturing Neurodiversity also has a couple of good videos on activities to encourage interaction. She also makes the point about keeping it short and not expecting too much. Maybe returning to an activity for short periods throughout the day.
www.youtube.com/playlist?list=PLbjLeX_GUAhBp8YA4-JDlBzPdSWnbAGb_

I have also used Chirp SLT on YouTube a few times. I haven't actually watched any of hers for a while, but she really improved my understanding of sensory stuff, and I'm pretty sure she also has videos on encouraging interactions. I just looked at her latest video and it does include some Floortime principles, so may be worth a look.
www.youtube.com/user/ChirpSpecialNeeds

The thing I like about her is she's not prescriptive about what counts as communication. At one point in the video she includes a child looking at her face "as if to say 'woman, push the swing!'" as communication, which made me laugh. So anyway, I like that. All our early SLT input was requiring DD to do very specific forms of communication back to us (e.g. if she brought us the bubbles and handed them to us, that didn't count as a request - she had to actually say it - which made no sense to me, as surely communication is communication, and bringing the bottle to your parent after struggling to try to open it seems like super clear communication to me!)

Anyway, not to everybody's taste and the videos can be a bit slow, but I've found them really useful.

And sorry about the tricky bedtimes. DD has been struggling to get to sleep. I suspect it's processing all the changes going on for her now, so hoping she will settle as she gets used to summer holidays. At least she doesn't wake up too early so I'll take that way round over the alternative any day!

I’m hoping ds will settle down once the stress of school is out of the equation over the holidays. He went to sleep at 9:15, awake at 4:20 today 🤣

Thank you all for your hugely helpful suggestions re play. If I'm being honest, DS's play skills have not moved at ALL since he was 2 (he's now just turned 6). Then he liked to run around and not sit with anything and now he's pretty much the same. Open, I've ordered one of the books you recommended so look forward to that arriving....

Danni, sorry things were hard yesterday...perhaps DS just sees coming home as coming home and ending any work or demands he sees as schoolwork? You know he's bright, that won't change. If he's not up for it (DS wasn't much either yesterday - its so hot though) just start again tomorrow.

God bedtime! Last night was midnight (though had to wake him at 8.30). Its actually like as soon as he walks into his bedroom someone has given him a shot of adrenaline. He actually screams with delight and its then game on. And this is after melatonin.

Liv - hope school is up and running again and DS gets back into it.

LightTripper - have you had our play therapist?! Nice to see (well not nice but you know what I mean) that there are others out there. The thing with this bloody woman that will haunt me forever is that she actually did quite well out of us. She worked in nursery and they recommended her - she charged a fortune to assess DS (hundreds), then we had a couple of the sessions about "how is your marriage" and so on, in the course of the second she said "I feel I need to hug you" and practically knocked me off my feet at my own front door when she was leaving (I don't even hug my mother ffs, I'm not a hugger) :). Shortly after that DS was going through a biting spell at nursery so I emailed her saying it was really upsetting, what could she recommend? Perhaps some time out, quiet talking to DS?? She went deathly quiet then sent me an email saying I clearly hadn't understood that her work was about the child, not me or what I wanted, that I was a terrible mother wanting to punish DS and that on that basis she was terminating our relationship (and here was her final fucking invoice, sorry pardon the French). And that was that.

I certainly work in a job where you can't just take people's money and then say you are ending the relationship unless there is a damn good cause (even then, its so tight when I can do that). All I'd done was ask for her help on something - maybe she thought it was a silly question or whatever but I was furious that she had just taken her bat and ball home and ditched us (ditched DS). I actually did some research at the time to complain as I thought some professional body must regulate her but as I understand it there are play therapists (and anyone can say they are one) or regulated play therapists (of which there are few - and she fell in that camp). So Light, I'm still fuming too.

Can I throw something out there and don't jump on me! Have any of you ever looked into/thought about stuff like biomed/looking at what is biologically causing symptoms (if there is anything) and then trying to tackle that? This is really not something I have ever entertained but its something that we have forayed into (tentatively I must say) recently. DS has had loads of tests done and lots is out of sync in his body. Now, whether it would be if any of us were tested I don't know - quite possibly, but there is an argument in this field that if we try and put that back "in sync" it should improve the sypmtom(s). And a lot of what we talk about with our DC is behaviours isn't it - whether its the poor sleep, hyperactivity, over or under sensitivies etc etc.

I know a lot of people say they don't want to change their children but I often feel like at his core DS has so much potential but there is also so much covering that up and if that could be stripped away to any extent life would be so much easier (for him - not us if the play therapist woman is reading!).

Hope everyone and their DC's have an OK day :)

carrie I think that if my ds got a decent sleep every night and ate a more varied diet that some of his behaviours would improve. I don't think it would change him much but I think it would have to have some sort of impact. He is bright, verbal and interacts with us constantly, it's not that he lives in a world of his own, but I think nutrition is quite important for full health and the long term impact of his diet does worry me if I think about it. These days I try not to because it's not really in our control.

You hear of plenty of people who say that things like a gluten free diet helped their dc, though there are probably loads for whom it made no difference. As ds' diet is mostly gluten based we would struggle there!

I'm not sure if that's exactly what you are referring to, did you mean that or something else entirely?

I have a friend who used the GAPS diet years ago with her youngest who had dyspraxia. She recommended a book to me about it. She told me that it took about 18 months to see meaningful results which I was very sceptical of as surely development during that time would account for a huge amount of that?

Yes, what you say is right Open… I find it very complex but the approach divides into food as you say but also supplements (I use that word broadly). So DS has been shown to have elevated levels of certain things, and supplements are used to bring those things in check. To use just one example, kids who are very hyper, bite, pinch etc are often found to have high levels of gut candida. Taking specific anti fungals addresses that issue and then hopefully those behaviours dissipate. It’s not about curing but getting the child health wise into the optimum position to respond to other things. Salt, OT etc. It’s quite controversial I appreciate and we aren’t fully on board yet, I just wonder what others think.

We did do a trial with gfcf but can’t say that’s made any difference…

It's not something we've dived into. I think the key thing would be to get someone reputable (if it's possible/regulated) as it strikes me there's a massive opportunity to take advantage here. You read all sorts of things about high levels of heavy metals causing autism - people post here about these things semi-regularly. I'm not sure the science backs any of this up. Leaky gut seems to be the current cause of lots of issues.

We give ds the well kid vitamin liquid and calcium/magnesium supplement (mainly to try and aid sleep!), an omega 3 and a probiotic powder. I also give him vitamin c drops as he eats no fruit or veg to speak of and the main supplement doesn't contain much.

Yes. I’ve gone for a country leader in this field who is advising. It may not work for DS but if it doesn’t I think that’s just because it’s just not for him rather than her lack of ability if that makes sense!!

We’ve tried magnesium / zinc / high strength fish oil / Epsom salts in the bath.

Did do a bit of gluten free 2 years ago but ds is limited in what he eats (and everything has to be branded) so couldn’t carry it on as he was point blank refusing substitutions.

I emailed for the Sunderland test for gf/cf around the same time but didn’t go ahead because of the above.

I’m a witch dr anyway! I use arnica on his bumps and bruises, lavender in his bedroom / bath. I’ve cured his ingrown toenails with magic foot soaks with all sorts of potions and lotions whacked in.

You should see my bathroom cupboard

🤣🤣. To be fair there’s often something in it!! I had an awful wart on my hand a few years back. Loads of trips to GP and then paid ££££££££ at a specialist laser clinic. Wouldn’t budge. Found what DH said was a very dubious American website and… done!! Went in a week and it’s not been back since!!!! 🤣🤣🤣

Ds hasn’t been in to school this week and doesn’t seem keen today either.

When does everyone finish for the holidays? Next Thursday here.

Only two days left til DS's end of term. He has been really struggling this week too, especially as his TA has been self-isolating.

Just heard back from the one holiday club that I thought might work for DS as it is just mornings, mostly outdoors and some of his classmates are there. Whilst I have been waiting for a reply to my email about his needs they have become fully booked.

The oral feedback from DS's assessment of sensory/trauma/attachment was thought-provoking, depressing and at times weird. They seemed to draw some inferences which didn't ring true to me. I will suspend judgment until I receive the full report

Hope everyone has a calmer day and the children go off to school happily.

dimples sorry about the club, what a shame. Hopefully the full context of the report will give a broader view.

Dimples that sounds like a tough read. So annoying about the club, you would've thought they could reserve a place while answering you. Ds's school are trialling a holiday club for a week this summer, which I've signed ds up for. Whether I actually get him in there is another matter!

Open sorry about the lack of sleep and school this week! When do you get feeedback about the annual review etc?

Carrie we've tried Epsom salts and magnesium to help with sleep. Didn't notice any difference. Ds couldn't do a gluten/dairy free diet as that would literally cut out everything he eats.

Both kids break up next Friday. I feel like it's going to be a very long summer!

Another frustrating morning here. As per yesterday, we got to school then he just refused to go in and we had 15 minutes of messing around before I just took him home again. It really is my least favourite scenario - stressful and just a complete waste of time.

He just won't bloody talk about it. We get snippets but then he won't go into any more detail. Like just now he said some unkind words hurt his feelings but I have no idea what or who. He could mean something at school, he could mean me trying to get him in this morning and getting cross. It really is anyone's guess.

I'm trying to make him realise that we have to look for a new school and once we do that there will be no going back, that he won't see his friends there after that. I think he feels he can just choose to go or not and there are no consequences of that.

Open, sorry to hear about school struggles. Do school not have any strategies? There is a little boy at Ds's school who frequently refuses to go in. Their strategy is always to send mum home (otherwise he's worse), then they deal with it (usually successfully, I have to say - I've seen them in action). I'm sorry, you have probably talked about this to death previously on this thread, I've just not read it. Is there any mileage left in DS's current school do you think? I'm really no expert but I would have thought school refusal must be commonplace for them - there is a lovely little girl in DS's class who is NT (so far as I'm aware) but refuses to go everyday (she gets carried in, literally kicking and screaming most days). She always comes out OK so they must do something right when she gets in.

Dimples, DD's closest friend at school is adopted and I'm good friends with the child's mum. She also has a son (also adopted) who has very similar issues to those we chat about on here. She talks too about attachment issues and the help she gets from adoption services etc, some of which she finds really useful, at other times its mind boggling and my friend says she finds can be quite conflicting. Especially in terms of the advice she gets for her DS, but also her DD too. Hope the report is clearer and explains what it should.

Kids finish next Friday although another bubble gone down today. DD brought everything home yesterday from school as if it was her last day - apparently the teachers are treating every day now like their last just in case the whole thing pops!

carrie I'm not prepared to drag ds into school against his will. We did it a few times in reception and it really is gut wrenching for both him and me. He is anxious about something at school, forcing him there is not going to help with that I don't think. Perhaps I'm too soft but none of the specialist teachers have suggested that as a strategy.

I don’t think you are soft open. Hope you find out what’s worrying him, I always think school must be well trained to find these things out but I probably overestimate them!! We are nearly at term end for us all so fingers crossed for a reasonable few days for us all….. x

carrie probably with NT children they are. Most children, unless they are traumatised, are likely to open up to a sympathetic adult. Ds with ASD refuses to talk about what exactly is the problem. We get bits and pieces only, and while school have and do make many adjustments for him they can't fundamentally change the school.

We started a reduced timetable in September last year when ds struggled to reintegrate after lockdown. It worked well then but isn't now. None of the techniques the specialist teaching team have suggested are working, he will not be bribed (with a weekly treat for attendance) which is what we have generally relied on in the past but is no longer working.

Maybe the summer break will be enough to ease whatever anxieties have built up in his mind but I doubt it. I think that it is a combination of the impact of Covid lockdowns and being in and out of school, the work becoming more difficult and him feeling it is too hard for him, plus him becoming more aware of his difference to the other children and his lack of fully understanding the social rules that they find so easy.

It really is a lovely school. It makes me very sad that it hasn't worked out for him.

I really understand that because DSs school is lovely too and I’m so upset we are here. We were so lucky to get DD in and when I spoke after that to the head about DS and he said they were really inclusive, would do what they needed to do to support him etc I was so happy. I get upset thinking about them not going to school together in their matching uniforms with DD looking out for Ds at playtime etc…it’s awful. Which is why I’m fighting a battle in part now with school for them to do what they need to for him. And him to stay.

The only thing that shakes me out of this is when I think if I leave him here, in a year he could have still made no progress. Still be fighting this bloody awful battle. Still jumping every time the phone rings (I’ve been jumping all week then think are you mad? DS is here with me! They can’t be ringing me about him when he’s at home!! 😃). Maybe I will have a different child if I move him. Maybe I would have had a child now who I can communicate with and maybe who could speak even if I’d never started this journey and had placed him elsewhere a year ago. I know there are no crystal balls but it shakes me out if crying about matching uniforms and so on…!!

I'm always torn on the biomed stuff @carriebradshawwithlessshoes. Most of me suspects it's a load of woo-merchants like our play "therapists". But then there does seem to be a link between autism and collagen disorders (like hEDS), and apparently that can go with digestive problems too. So it's not unlikely that several of our kids do have digestive problems, and anything that is causing discomfort or pain is going to be a good thing to get rid of if you can.

At the moment DD seems pretty good food-wise. We used to get terrible problems with constipation but after years of Movicol and various unsuccessful attempts to taper it down she's now been off it for at least a year and a half (maybe two?). I think that was more sensory than digestive though - we just tried to potty train her way too early because her nursery said they all had to be out of nappies. It's silly, if we'd just talked to them I'm sure they would have made an exception but we were just scared of rocking the boat or being told she couldn't go if we didn't try. Pretty sure she would have got through her accidents sooner if we'd just gone at her own pace though.