Thread 14 - Autism and any other SEN

[dimples76]

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

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

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

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

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

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

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

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

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

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

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

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

Yes, I think I will need to @Carrie. It's just hard finding the right amount, that said it was 2 years ago so it might be different now ..

How are you @Ahna65 ? I hope a bit better than when you last wrote.

Hi, wondering how everyone is doing?

Hi @openupmyeagereyes

We are bumbling along okayish at the moment. DS's journey through puberty remains a challenge - him being naked a lot is not easy to manage especially with DD.

Mixed feelings as we head towards the hols.

How are you?

Hi dimples. Yes that must be challenging. How old is dd now?

We are doing ok, ups and downs as per usual. Ds has matured a lot, is taller than me now, but still prone to emotional outbursts at times which can escalate at school. We are starting a private ADHD assessment for him as I’m hoping that we can find a medication to help with the impulsivity around it.

Hi all! We are good here. Still pottering on! DS getting really into the world cup! I finally finished my novel. I left my job a few months ago as I was threatened at work (don't ask!!) So I've been looking for something and got something finally starting soon doing more like what I used to do. Ive been doing some lovely work recently supporting literacy though and I will miss it so much, but it just doesnt pay enough. Hope everyone else is ok,I have missed you all xx

It is lovely to hear from you all! Quite a lot going on here.

Decided DSs placement isn’t right for him so appealing various aspects of the EHCP. Does anyone ever feel that what they have isn’t right but aren’t sure of the better alternative? As part of that we had him assessed by an EP who finally was able to conclude good cognition so I’m just so pleased to have that in writing. He was really good at answering the questions, reading, maths, all the stuff I have known for years he can do. Unfortunately although I’ve not seen the report his overall presentation will notwithstanding all that be brought down by his lack of independence/ functioning with day to day skills. I feel I’m in a rut as I just now do stuff for him and I probably shouldn’t. It’s a hard habit to break.

good luck with the adhd assessment @openupmyeagereyes . A lot of people find it a game changer. DS is still taking guanfacine. I am not convinced about adhd for DS, I find things hard to pull apart ie is his impulsivity down to his lack of social understanding, is his lack of focus because he actually just has very little that holds his interest?? I hope that with age and maturity those foundational things may change and then bring about a behavioural change as a consequence, but I could be being overly optimistic. Unlike how some of you describe your DS mine is still very ‘young’, in looks, mannerisms and size!

good luck too with the new job @LydiaBennetsBonnet! that’s super exciting!!! Let us know how it goes!!!

I too have mixed feelings re the hols. DS can’t be left alone and frankly my childcare options now are very limited. My AL does not and cannot cover it all and work doesn’t stop/ slow down/ care so I’ll be frantically as always trying to stay afloat whilst trying to look in control and trying not to drop any balls.

how are you @Ahna65 ??

im pleased we are back in touch, thanks for the prod @dimples76 , I have been meaning to message but you have beaten me to it.

Sorry, the prod @openupmyeagereyes 😂😂. Wrong prodder!!! Happy for it to be anyone though! 😂

Lydia congrats on finishing the novel. I hope your new job goes better for you.

carrie there are elements of Ds’ school that don’t suit him but I don’t think another provision would necessarily be any better.
Do you think for your Ds there’s something perhaps genetic going on if you don’t think ASC/ADHD are a good fit for him and he still looks ‘small & young’ for his age? I think you did have genetic testing done already though.

The EP said he thought DS was on the spectrum but then I think most NV children of his age would be deemed to be unless there was an obvious other diagnosis like a genetic blip. I did a few weeks ago have an appointment with a geneticist to discuss and he reckoned that all asc is genetic, the more severe presentations being down to the likelihood of a one gene issue, the others a combination of genetic differences. He saw DS and said he had no dysmorphic features which often show with a ‘one gene’ variant and so he suspected a combination of genetic differences, possibly, that resulted in his presentation. However he said he didn’t see enough to strongly advise further testing (and yes he has had the cma already which showed nothing.)

I think DSs smallness/ young features are just him. I do hear friends talk about their own kids in similar ways ie my own DD started periods at 11 and was almost my height at that age. A friend was talking about her 12 year old DD who is still wearing age 8 clothes and a million miles from puberty (and is tiny.) I do want DSs development to progress before he ‘looks’ his age but obv I’m not in control of that…!

carrie how old is ds now?

I also think re adhd that if it was that, one of the many meds he has tried would have worked to keep him sitting at a table in school, or not wanting to get up and leave a restaurant when he’s finished etc. I am not sure any have (to any significant degree)

And yes to ASC being genetic, I meant some other genetic variation.

On another note, we got a NOW tv subscription when HBO launched here and I finally watched and just like that. I enjoyed it though missed Samantha as her and Charlotte are my favourite characters.

I think I dropped off this thread for two main reasons. Firstly, there’s so much I could write but I feel that it would be so outing so it’s difficult. The other reason is that I just spend my SM time on Instagram rather than MN now. But I did miss you guys and your updates.

God knows what we’re going to do with ds when the ban comes into effect. YT is one of his favourite things in the world.

Also just watched project hail mary on Prime. I loved it ❤️

DD is nearly 7 @Open whereas DS is of last month a teenager. DS still looks to the world like he is about 8 or 9 but developmentally is probably more 6 or 7 and. Now he gas started puberty it really feels like his cognition and physical development are really out of synch.

Good luck with the ADHD diagnosis, Open. DS absolutely refused to take the meds and we have not been able to get passed

@LydiaBennetsBonnet congrats on the book.

@carriebradshawwithlessshoes good luck with finding a better placement. Like Open there are quite a few things I would change about DS's school but I don't think there is anything within a reasonable distance (if at all) that would be better.

Some interesting comments (as always!!). @openupmyeagereyes i have thought a lot before about the outing point and thought who may recognise me and would I care? I don’t talk to friends much about mn and if any of my real friends recognised me on here nothing I say would be more than what they know anyway. If DS’s contacts or a teacher of DS recognised me, that could be useful! I have no connection with DS classmates and DDs don’t know enough about me to recognise me. So who could it be? I kind of think very few and of the aforementioned would I care? Prob not. DS was 11 last week in answer to that qu.

I relate to what you say @dimples76 I think our DSs are probably very similar in terms of looks. I am taking my DD away shortly for a weekend and have booked an excursion that includes champagne extra (it’s in Europe). She is 13. I am fully hoping she gets the wine (for me!!!!) she is full price ticket so I have paid for it!! I will buy her a coke!! I see no reason they shouldn’t assume she is 18 😂😂. She looks it.

I have watched all of SATC and Just like That. My user name is carefully chosen as all of my friends were like the characters (into our 30s) and we had that life to a tee in our northern city (sadly not NYC!!). I loved all of the characters and agree Samantha was missed in the follow up, IRL I would say I’m a Carrie/ Miranda cross!! Miranda for the outlook and job, Carrie because I do love fashion and shoes.

im a SM dunce (no insta or much else) so hopefully we can stay in touch.

Oh one thing I would be interested in for feedback!! The EP talked a lot about ‘General’ SS v ‘specialist’ SS. Such as ASD SS (but others too). DS’s is the former. The EP said that DS’s way of learnig is so specific (almost one to one at a desk, very regimented) that a ‘general’ SS is inappropriate, he needs something more honed/ individual in terms of placement. Do you think your DCs need/ have that?

carrie what sort of specialist schools are there other than for ASC, dyslexia or emotional difficulties?

Ds has done a lot of his learning like that but this year they have been encouraging him to be more independent and also working in small groups. Some days he’s able to do this and some days he isn’t but he’s made good progress this year.

Most schools don’t have the staff to accommodate 1-1 learning so you might need to get that written into the EHCP. Unless the council is willing to fund it then it might put schools off?

Hello everyone! Long time. Nice to read updates especially glad there are some positive ones in there. @carriebradshawwithlessshoes intrigued to hear more about the issues you have with the placement?

i think for us not a huge amount to report although can’t remember when last wrote. Sleep has had some improvements with medication but that isn’t consistent, she seems to outgrow medications even where that wasn’t physiologically expected by the doctor. But it’s not the 6 terrible nights a week it once was.

the bumetanide eeg changes seem to have reversed so probably not going to continue , didn’t see any behavioural changes anyway but a bit disappointing that they don’t have any alternatives to try.

intwresfing what you raise @openupmyeagereyes re @carriebradshawwithlessshoes and genetics. We’ve had a huge influx of cousins arriving on both sides of the family and whilst I hope all develop normally (hope i don’t offend anyone with that word ) i am also intrigued as numbers wise you’d really expect some similar situ to arise if there is something genetic.

plodding along at the same daycare , waiting lists for the next place are slow and tbh no real rush as she’s content where she is but I do think they don’t have enough space now the kids are growing. Nanny wraparound care situ continues to be a huge admin hassle we’ve had a few drop off for various reasons (including finding it too hard) and we have the general feeling that it’s going to get a lot harder to find suitable and willing people as she grows. She’s faster and stronger all the time but no real steps forward on the difficult areas - communication, still in nappies etc. We really would like something more institutional after school type equivalent but few and far between.

DD2 is growing up too and more sociable than ever wanting play dates and such so that’s a bit of a juggle but she has to just realise Dd1 is going to be around for that stuff really.

mixed feelings too about the summer period, we decided not to go away as it’s just too stressful with DD but that does come with some feelings of disappointment even though we have a fairly nice set up for a staycation if I embrace it properly.

Agree @carriebradshawwithlessshoes outed myself long ago I reckon but worse case scenario people can read that i don’t find them supportive from time to time I suppose :-)

@Ahna65 what sleep meds does she take? Interested as sleep currently poor for DS.

Re the school I can only relay what the EP said (he did observe in school) and I’m interested to know from those in asd schools if this is right! So for DS they have a tiny class but it’s group work and a topic etc. I’m not saying he doesn’t have some one to one but a teacher talking about x in a class of 8 will not grab his attention or focus, he will get up and wander and not engage. Also it’s a general topic as in, this is the topic for the term. They are pretty crap too, like nursery standard, but DS prob looks like he doesn’t have a clue as he is wandering about in la la land.

The EP said in a (for eg) asd school all children have a very tailored to them programme based on what they can do. He said that even if not all the time they are taught individually at a pod station type arrangement (sometimes he said even in a pod) to work and push them and the learn and move forward. He said this was very different teaching to as current, in a ‘general’ setting. It is this way of working that over the years I’ve flushed out what DS can do, playing devils advocate you may say this is totally useless as it’s a false environment but I’m sick to death of mails from school saying ‘next term we are learning about animals in the farm’ or ‘learning numbers 1 to 5.’ When sat with me and a tiny whiteboard at a desk he can do his 8 times table, add, subtract, divide etc!! However I am not privy to any asd schools so don’t know… but would assume the EP would?????

I’ve explained the genetics poorly but I agree Ahna. The Geneticist explained it better however as DD has had genetic tests do you not think this isn’t relevant for her or something would have been picked up. There is the (unpopular on mn) train of thought that as she developed normally for a while and has clear genetics that it’s an environmental factor/ factors at play and you should jump into biomed type stuff. Have you explored this, would you?

Anyone feel (reading Ahnas comment about hols) that you just need to detach from friends. I don’t have loads but I do have a small group and all I hear is about the piano concertos, the Duke of Edinburghs, the nights out now that the kids can be left alone. The trips this summer island hopping in Thailand because of course the dc are old enough now and can do long haul and they are such foodies!! How marvellous. The latest is omg both dc are away with school at the same time so me and DH just have to book a long weekend in Rome/ Paris/ NYC!!!! With lots of gushing from the others and tales of them doing exactly the same! Just cannot be doing with it.

anyone else?!

carrie maybe the EP has knowledge of schools in your local area, I’m sure it varies a lot depending on the school. Ds goes to an ASC specialist school and that’s not how they do it but that’s the only one that I have experience of and the hope there is that some of them can do some GCSE’s. Some classes are mixed years so they can put children who are at a similar level together if possible. They also have to factor in children who don’t get on as this can be a massive issue for some of them. But they do have a curriculum and they teach it to all in the class with children working at the level they are able to. Ds is working behind ARE but is making progress.