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Thread 13: autism and any other additional needs A/W ‘23

1000 replies

openupmyeagereyes · 19/10/2023 06:21

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
https://www.mumsnet.com/talk/special_needs/4816294-thread-12-autism-and-any-other-additional-needs?page=1

Thread 11
https://www.mumsnet.com/talk/special_needs/4711291-primary-school-auties-11-2023-is-here 

Thread 10
https://www.mumsnet.com/talk/special_needs/4592899-primary-school-auties-10-summer-and-beyond-2022?page=1

Thread 9
https://www.mumsnet.com/talk/special_needs/4502988-Primary-school-auties-thread-9-spring-summer-2022

Thread 8
https://www.mumsnet.com/talk/special_needs/4422100-Primary-school-auties-step-into-Christmas-and-the-New-Year-thread-8

Thread 7
https://www.mumsnet.com/talk/special_needs/4303826-Primary-school-auties-summer-and-the-new-academic-year-thread-7

Thread 6
https://www.mumsnet.com/talk/special_needs/4166833-Primary-school-auties-spring-2021-and-beyond-thread-6

Thread 5
https://www.mumsnet.com/talk/special_needs/3953023-Primary-school-auties-summer-and-beyond-thread-5?page=36&reply=104240251

Thread 4
https://www.mumsnet.com/talk/special_needs/3748449-Primary-school-Auties-into-2020-thread-4

Thread 3
https://www.mumsnet.com/talk/special_needs/3628263-Auties-transition-to-Year-1-thread-3

Thread 2
https://www.mumsnet.com/talk/special_needs/3451020-Reception-auties-2018-19-thread-2

Thread 1
https://www.mumsnet.com/talk/special_needs/3080753-DS-with-ASD-starting-school-Sept-2018-I-am-feeling-overwhelmed

Primary School Auties 10: Summer and beyond 2022 | Mumsnet

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 par...

https://www.mumsnet.com/talk/special_needs/4592899-primary-school-auties-10-summer-and-beyond-2022?page=1

OP posts:
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7
GrouchyKiwi · 29/04/2024 18:08

Ah, sorry for the misunderstanding open. That makes sense.

carriebradshawwithlessshoes · 29/04/2024 19:39

ha ha dimples, don’t worry I assumed it wouldn’t say he was illiterate, I know you just said it read poorly like he was!

Ahna65 · 30/04/2024 12:13

Hope you're having a better week @openupmyeagereyes . It's impossible not to have those days (/weeks / months) where things feel rubbish. I've said before, you seem to do a great job generally of keeping a positive perspective on things. It's so hard!

@carriebradshawwithlessshoes I can see your perspectives on the diagnosis. I think for us it was just something we sought very soon after the whole regression / move to SEN setting / that whole period - sort of tied up in the same phase. I think I already knew what the diagnosis would be and found it helpful to be able to point to that to others (/ didn't see any downside as such). But if we hadn't looked into it then and some years had passed, hard to say how I'd feel about it.

We got the EEG results and in short everything within the range of "normal". A few minor notes on various waves and medical jargon but no seizures / epileptic activity. Of course good news in a sense but also I find it hard to receive more "normal" results back as it just gives nothing to work with really. I think likely we won't get any answers / more treatment options and indeed the causes of regressive autism are just a mystery. We are finding her behaviour atm really hard and feel pretty worn down by it all. I think a combination of a lack of real progress in any area in the last year or so (and actually going backwards in some areas) coupled with her becoming ever bigger and heavier is just making it all feel like a challenge all the time. I'm also writing this on 3 hours sleep which as we all know helps nothing at all!!

dimples76 · 30/04/2024 17:22

Oh Ahna that sounds tough. It is also a weird feeling when you expect a certain outcome/explanation from a test. DS had an MRI of the pituitary gland a few years ago and all the medics were sure that it was going to explain a number of health issues - however, it was totally normal.

I am in the waiting room whilst DS attends the CAMHS emotions group. 50 mins in (and only 10 mins to go). He hasn't left the room so that's good. A couple of the boys in the group go to what will be DS's school in September.

carriebradshawwithlessshoes · 30/04/2024 18:00

That’s great Dimples and lovely that he is meeting those kids now. @Ahna65 i think it’s imp to rule things out as well as in. Epilepsy is a horrible thing so great she’s clear of that in the eeg.

changing subject dramatically DH and I are going to a concert Fri! Keane! Does anyone know who they are? I asked our young people at work and got very blank looks. I’m looking forward to it.

carriebradshawwithlessshoes · 30/04/2024 18:03

I even did a bit of singing in the office. Nothing. What is wrong with the youth of today???!!!! 🤣🤣🤣

Ahna65 · 30/04/2024 18:23

Yes indeed @carriebradshawwithlessshoes you are right but I find the lack of answers hard.

I love Keane! That’s fun

carriebradshawwithlessshoes · 30/04/2024 18:27

Hallelujah not just me who knows who keane are 🤣. Only my view but there are answers (I think), maybe epilepsy isn’t it? Did you get your genetics done for dd? Did it show anything? Was it a full genome sequence?

GrouchyKiwi · 30/04/2024 18:28

DH would be very envious of you going to see Keane! (I only know three songs by them.)

Ahna65 · 30/04/2024 18:30

@carriebradshawwithlessshoes full genome sequence inc both me and DH and all clear (although obv they don’t know everything that might be linked yet, they are still learning about autism). I think in terms of tests and answers from that, we don’t have much more to find, but that’s the same I’m sure for most parents of autistic DCs, the biological basis / cause often not clear

carriebradshawwithlessshoes · 30/04/2024 18:45

@GrouchyKiwi thats better than my young work team! You have passed the Keane test and not been subject to my singing 🤣.

i don’t know @Ahna65 . I think that something is often thrown up in genetics. Have you looked at things like PANDAS? FRAT tests? Do your drs suggest anything else (I think they are way ahead of here in terms of thinking out of the box.) mad qu but do DD1 and 2 look the same??? Or similar? (I will be a geneticist in my next life!)

carriebradshawwithlessshoes · 30/04/2024 18:49

@GrouchyKiwi scrolling up, I think it was you re braces????? DD just had done last week so I feel quite informed 🤣. Does she need the palate? DDs are kind of stuck to her teeth, it was a quick job, no palate needed??

GrouchyKiwi · 30/04/2024 18:52

@carriebradshawwithlessshoes Yes, plate first for 18 months to get them ready for the stuck-on-the-teeth traintracks. To be honest, I think the latter will be more difficult for her as she won't be allowed to eat her favourite foods, so we're hoping the plate does a lot of work (as she takes that out for eating) and maybe the braces won't be so necessary. We'll see.

openupmyeagereyes · 30/04/2024 18:52

I love Keane too but have never seen them. Enjoy.

OP posts:
dimples76 · 30/04/2024 19:09

Out out Carrie! Have fun. Now I have Somewhere Only We Know stuck in my head now.

My sister and I went to see the Kaiser Chiefs a couple of weeks ago. As we were driving there, I thought I am way too old for this, why didn't we get seated tickets?! But we had a great time and it was great to lose myself in something else for a while.

Unfortunately DS came out of the group saying that he does not want to go again. There are 6 more sessions so will try again next week.

openupmyeagereyes · 30/04/2024 19:20

Have faith dimples, probably just because it’s new.

I haven’t been to a concert since I was pregnant with ds. I have to live vicariously through others!

OP posts:
Ahna65 · 30/04/2024 19:33

Ah @dimples76 shame but glad he made it through the session and maybe he will reflect and feel more positive about it? Any idea what format it took?

openupmyeagereyes · 30/04/2024 19:38

Ahna good to rule things out too, but understand the frustration. Is there a next step? Apologies if I’ve missed that.

OP posts:
dimples76 · 30/04/2024 19:53

Yes, to be fair he managed much better than most of the boys. One of whom kept trying to throw himself down the stairs. His Mum was telling me that they had to be moved to a bungalow as living in a house with stairs was too dangerous. Complete mystery what they got up to in the group. I am about to have my daily Dr Who session with DS which is often when he shares things.

carriebradshawwithlessshoes · 30/04/2024 21:00

@GrouchyKiwi why do they need a plate to prepare for braces?? (Dentist in my third life 🤣). Hope she gets there. Are her teeth bad? DDs were kind of crossing over (the front 2 so obvious). Now they are on she thinks they are some kind of fashion statement, tbf it’s a thing with adults atm it seems. They do look ok. The dentist said her average patient for braces was 40s plus, it is never too late it seems. Have you been in the UK long @GrouchyKiwi , I know this thread is about our kids but I often think about chatting to you all as I would my RL friends. Would love to see NZ but the logistics seem tough. Maybe my fourth life (after the dentist, after the geneticist 🤣).

we don’t go to concerts really, hence the novelty. The year before last we saw Coldplay at Wembley which was amazing and spurred us on to do more, though it’s taken this long!

carriebradshawwithlessshoes · 30/04/2024 21:05

@dimples76 bet the kaiser chiefs were great, I think DS did amazing too to say it was his first time. That’s daunting for anyone, even a NT child.

GrouchyKiwi · 30/04/2024 21:14

@carriebradshawwithlessshoes I don't fully understand, tbh! Something about pulling them in a bit so the braces can then be applied. She has a significant overbite - one of the problems of fitting Dutch teeth into a British mouth. The fact she can get them as an adult if needed is comforting. I really don't know how she's going to cope with them, but maybe once they're on they won't be as bad as she's worried about.

I've been in the UK for nearly 18 years now. Love it here, although miss NZ sometimes. Last time we went back DD1 had a total meltdown in Singapore airport on the way home, which was horrible. She was so tired and it was all too overwhelming. There wasn't anywhere quiet we could take her to feel safe and calm down. In the end I found a wheelchair and we pushed her around the airport in that, which helped. But she had a fantastic time visiting family, meeting cousins, and just being on my parents' huge property. We considered staying!

carriebradshawwithlessshoes · 30/04/2024 21:29

@GrouchyKiwi re the braces DD initially found them odd and they felt strange but then as sometimes happens she seemed to forget they were there. She’s NT tho so don’t want to underplay. At the mo they are just on the top teeth we are returning for the bottom set soon. Oh I had a good chat with the orthodontist and she said there’s def no hurry, indeed it’s all quite aesthetic. With DD she quite wanted them doing and the dentist said it wouldn’t improve but it can be corrected any time. I’ve a friend who is just going through this with v similar teeth to DD at 45!

it must be lovely to have far flung family. In ours, straying far from the nest isn’t really done much. Very un mumsnetty I have to say! My own parents had a sharp intake of breath when I announced my uni of choice which was 3 hours away 🤣. And then I came home for a job after. I’m always quite admiring of people who have made such a huge move, though appreciate I’m probably not the norm!

GrouchyKiwi · 30/04/2024 22:24

Thanks @carriebradshawwithlessshoes Her big worry about the braces is that the orthodontist said she wouldn't be allowed to eat chocolate bars or drink juice, or anything like that, and DD feels that's deeply unfair. It feels too over the top to me, frankly. I can understand recommending no chewy sweets.

It's hard being so far from family when you have little ones. Most of my family lived in the same town when I was growing up; most have moved away across NZ and Australia now. It is cool, though, for the girls to have family on the other side of the world. I think they do find that special. DH's family is in the south of England; we're in Scotland.

My parents are coming to visit in two weeks, which is so exciting!

Ahna65 · 01/05/2024 12:48

@carriebradshawwithlessshoes @openupmyeagereyes I think next steps will just be seeing what the consultant has to say in terms of any more ideas. Think PANDAS was not considered likely (is that normally linked to an infection?) although she was ill with a virus around the time of the infection so who knows. Haven’t heard of frat tests before.

for now I continue with my own theory that it is a combination of genes (albeit not picked up in the tests, but there’s so much they don’t know) and environmental triggers that - if not caused the regression, at least made it more pronounced.

@GrouchyKiwi yes long haul travel much be very hard and stressful. I find it hard enough to and from the UK. Was considering going back for a weekend when DH is away but thinking through whether I could truly manage both DDs alone on a plane I think the answer is no. Exciting that your parents are coming. I didn’t realise you were in Scotland, I love Scotland. Was close to an Edinburgh move at one point. Don’t you sometimes picture all these parallel lives you could be living !!

on the brace chat, I think chocolate and juice is fine with braces but the concern is having it stay on the teeth too long - so rinsing with water or drinking through a straw etc. Or we used to be told after chocolate to have a bite
of cheese because it neutralises things.

I had Invisalign a year or so ago. Braces as a teen but they kinda went backwards again , although to a lesser extent.

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