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

Ahna there’s nothing to lose by trying to give the melatonin when she wakes up. I’m sorry things are so dire, lack of sleep is one of the hardest things to cope with. Is the occasional hotel room doable budget-wise rather than a flat?

Hello, I posted in thread 9 but I've been very down lately and never followed it up. My son is 9 and autistic - on the pathway for over a year and a diagnosis in April but nothing done at school until June. We've just had the most straightforward term ever at school because his teachers are finally making the appropriate adjustments and looking at him through the right prism so not seeing him so much as a problem. It's not perfect of course but it's so much better.

Glad things are brighter Acronymsandinitialisms, must be such a relief for you.

Lovely weekend here of play dates with friends. Ds is watching Home Sweet Home Alone Christmas

So glad things are going better @Acronymsandinitialisms ! Knowledge really is power IF schools are willing to make the right adjustments (which often can be small and low cost).

Great deep pressure suggestions Dimples.
Hugs to all - as everyone has said this time of year is HARD work

Glad you've had a straightforward term @Acronymsandinitialisms and the school are finally giving some support.

Tough couple of days here. DD had a day of Christmas events on Friday - nativity at the start of the day, followed by carol service at the end of the day.

I'd already pre warned the school it was likely to be too much for her, and they said they'd do what they could to help, but I watched her crumble on stage during the carol service, stand there crying and clearly struggling with sensory overload. There were so many children in the service (about 150) that not one of the teachers noticed until it was all over and she was back in her classroom.

She's now been hugely disregulated all weekend so we're all exhausted and looking forward to the end of the week!

Hope everyone else is doing okay

Sorry for going quiet, lots going on. I’ve been reading though and hope everyone’s ok.

So… after discussions upthread we bit the bullet and took DS to a neurologist/ geneticist privately yesterday in London. I think Open mentioned neurologists and I just feel for him we are missing something. Does anyone else feel like that? The non speech but clever in other things, sociable away from school but struggling within etc. Anyway the consultant said a lot of speech issues are genetic and seemed to think this was the root of DSs problems. She said he obviously didn’t fit any conditions she’s aware of, he’s actually had a micro array genetic test but it’s not according to her ‘high end’ and felt we could drill deeper. She also said we should be insisting on more extensive eegs. All waaaay and above the nhs stuff.

i asked her if we could actually achieve anything by doing all this. Anything that could change DSs path. She said yes possibly. Sometimes not, but possibly. Especially around ‘speech and cognition.’ I said in terms of medications? She didn’t like that word as apparently it’s quite all encompassing but potentially. My absolutely fear of course is that is reveals something horrendous that we can’t do anything about.

so would you do it? Obviously it’s £££££ (next post will be Carrie Bradshaw with absolutely no shoes, clothes, house etc 🤣🤣.)

Its set a hare running in my mind which of course may get us nowhere. When we got back of course I googled and it may be wrong but I did stumble on a particular deletion which sounded just like DS. Hyper mobile, cognitive abilities shown with trusted adults but not externally, sociable with trusted adults but not in school/ where not comfortable etc. severe speech dyspraxia. I was a bit like OMG!

Interestingly she did say that whilst the nhs would diagnose him with asd and adhd he was not in her view. So now I’m a quandary!

carrie is it ££,£££ or £,£££? Quite a difference which might make be important.

I think the question you asked them was pertinent, did they give you odds at all of it being something where the outcome could be impacted? If it was the gene deletion you were looking at, for instance, then was there any treatment pathway as such?

Now you've gone this far, do you think you could not carry on? You might always be wondering what if otherwise. That's my main thought I suppose, as well as bracing yourself for it to show something where there isn't a course of treatment that will help.

Need to find out the £££s Open!

yes I asked the qu… odds of there being specifically something that could be done ie treatment wise ‘under 50pc.’ She wouldn’t be more precise. That was in relation to a specific ‘treatment.’

The article I found yesterday actually didn’t have a ‘specific’ treatment but it did recommend certain types of SALT as most effective if delivered intensively for that particular condition. Those were around dyspraxia type issues which is what he’s getting anyway, so if it was something like that there would really be no benefit to a diagnosis for him. The point made by the authors were that in that case it was worth diagnosis as that would channel the right SALT (not just general SALT) and avoid ‘misdiagnosis’ of ASD and ADHD (both common, also ADD).

I agree with Open, CarrieI guess once you have started to go down this route it is hard to put the brakes on. A micro-array test revealed that one of my DN's had a rare genetic deletion. As there are only 20 people in the world diagnosed with it, it doesn't really take us much forward in knowledge but that might change in the future. He has since been diagnosed with DCD dyslexia and ASD.

Thanks both. It’s an interesting angle. That is rare Dimples! DS does not have any dysmorphic features so I’ve never considered genetics really but it is apparently a red flag where there’s speech delay with other things such as hypotonia/ seizures etc.

How long does the testing take? Isn’t it ages on the NHS?

Not sure, she estimated on the nhs 6 months to get the test, if private it could be done asap,,6 weeks to get results.

I meant for the results once you’ve had it. 6 weeks is not too bad.

It's weird with DS at one point a lot of the Dr's letters mentioned frontal bossing (an overly pronounced forehead) but DS's forehead has looked normal for years now. Although one of the profs we havd seen took one look at him and said 'Ventouse delivery?' so maybe it was more to do with that. He had micro array too but that didn't reveal anything. We were re-referred to genetics when his growth became an issue but they didn't think that he matched any particular syndrome. Because we couldn't provide biological parents material he wasn't v interesting to them.

Dimples. Ds had to wear a helmet from 7 months to 12 months - we paid privately for it (he had plagiocephaly from his traumatic birth, failed ventouse and forceps delivery then emergency section ) he had frontal bossing and his ears weren’t in line. It was shocking, looked like he’d repeatedly been smashed in the head with a garden spade. The helmet moved his skull bones 6mm on the smashed side, they did a 4d scan before and after.

No one else would be able to tell now, but I can, especially when his hairs wet his head is still an odd shape. And a bike helmet doesn’t fit him!!

He had a whopping head when he was younger, it looks ok now though. Doesn’t look out of proportion.

Sorry I only read the last post, no idea what’s going on, I’ll have a read back now x

Wow, that's amazing Danni. How are you?

DSs head is big… well his forehead is very broad. Exacerbated tho by the rest of him being super small. Facially he’s identical to DD.

Did the neurologist say anything about head size carrie?

danni that all sounds very stressful. I wonder if ds has any stored trauma from it, you do read about it. Did you do any cranial osteopathy with him?

She said it was quite big. Didn’t make a thing about it just said it was the biggest bit of him but then I look at a lot of kids and think they have big heads! I’ve pics of DD looking similar when she was v young. She’s more balanced now at 10. In fact her first day pic at school looks like she’s a huge head!! He’s otherwise v slight, 6th centile I think she said.

Ds having a couple of days off as he has a cold. We’ve had a couple of disturbed nights but last night he slept through. Still freezing here; rarely above zero, mostly negative temps 🥶

As such things have been low key for us. I hope the festivities are going ok for everyone and not causing too many problems.

We have all been ill and on antibiotics again. DS in yesterday and today for all the Christmassy things. I'm finishing up at work for the break. Freezing here too. Can't wait for holidays now.