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

[openupmyeagereyes]

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

We had one once but she was completely crazy. Not what open said but I seriously doubted her credentials (if she had any) least of all because she kept wanting to hug me, said I was traumatised re DS’s development (no shit Sherlock).

it was at a time when DS was very much on his own agenda, her work seemed to be around following him and copying him to try and build engagement. More intensive interaction I’d say. Anyway she quit when I kept resisting the hugging (I’m not a hugger.) it’s down as the No 1 weird experience in my long DS book!

But don’t let that put you off, she was just very odd 🤣🤣🤣

carrie I think yours was just a quack!

Carrie what a shock your DD must have had! And that therapist doesn't sound normal. I am a hugger but most of my family, apart from DD are not. My Dad used to give the best hugs - I would love another one of those (he died 8 years ago). My sister was laughing because her eldest (who is only 5 but v chunky and has SEN) does not know how much pressure to apply and often unintentionally hurts people when trying to be affectionate but I love his hugs.

We have done theraplay and dyadic psychotherapy. There was no hugging involved! I think some of the activities/games they use are similar to play therapy. Ours were mostly addressing DS's control issues, building trust and improving our connection.

Open she said 2-3 weeks to take effect, today is day 1. That book sounds interesting.

Had a call from CAMHS today to book in DS's assessment appointments, there are 5 next week and the week after. Friday 15th December is D day when I will find out their verdict. Apart from worrying about the outcome am also stressing about the weather. We have snow here and the CAMHS base is in a town about 20 mins drive from home which is notoriously bad in the snow, after I ended up in ditch on Christmas Eve a few years ago I am anxious about driving in the snow.

https://playtherapy.org.uk/what-is-play-therapy/

dimples hopefully the roads will be all clear for the appointments

@carriebradshawwithlessshoes I wouldn't be able to cope with the hugging lol

It did give DH no end of amusement at the time. He used to say he thought she had romantic intentions … 🤣🤣

dimples, hope all goes well.

Dimples it's great they've finally given you an appointment, hope the weather isn't too bad for you to get there.

Carrie I don't like hugs from people I don't know, I wouldn't have liked that at all!

Hope everyone is ok and surviving the cold spell! No snow here just sleet and general dampness.

have our first appointment w specialist today, it’s called a second opinion appt (can only go after having a diagnosis) but instead of testing the actual diagnosis I understand that the approach is to try and customise therapies to the child by understanding more about the cause (I think they look at genes / metabolism / neurological activity). They seem to be into testing the ‘excitation’ and ‘inhibition’ activity in the brain and how it correlates with under / over stimulation. Not sure what any of it will mean for us but I’m intrigued to hear what they say also just to meet a specialist who is at the top of their field in it all. and yes @carriebradshawwithlessshoes def will be asking about sleep but I’m a bit reluctant to medicate if she does have ok spells now. still some awful nights tho. So I will see what they say.

Hi. Sorry haven’t posted for a few weeks, not been very well, won’t bore you with details, combo of symptoms I’m still no closer to finding out what the issue is.

Been taking ds to school for about 6 weeks now, he’s been getting on well at school, no issues at all, he’s won star of the week 3 Fridays in a row, every day they come out and say he’s been excellent, Think they’ve sent 2 complaint emails in the whole duration of time, which is a massive improvement on previously, (used to get at least 4 a week) he’s really settled down at school which I’m thrilled about.

He got chicken pox this weekend so unfortunately off school this week, but being a total shit bag at home, really testing my patience, I’m wondering if there’s a decent camouflage foundation I can buy to paint him with and send him back before Monday. 🤣

Hope everyone is ok x

Sorry ds is poorly danni but wow, that’s amazing. Has he been better at home too before he got chicken pox?

Sorry you’ve been unwell too, I hope you can get to the bottom of it.

Ahna hopefully the appointment can pinpoint the right support.

I hope the start of Christmas is going well for everyone, I know it’s tricky for some.

Things going ok here, ds loves Christmas thankfully. He got some certificates from his swimming teacher last week which he was thrilled with, bless him. He’s very close to getting the next one.

School is ok mostly, with a trickier day once a week-ish. I’m not sure he’s very productive with work but what can you do?

That’s great to hear @danni0509 , well done DS!

and @openupmyeagereyes also great on the swim certificates

we are keeping Xmas / prep time pretty low key, DD2 is quite into it all so will do one on one bits w her (cinema trip or visiting the Xmas lights) but trying to keep it calm otherwise. Want to do the tree but have a feeling DD will sabotage that / try to climb it ….

@danni0509 thats amazing, do you deduce from that that a lot of DS school issues are therefore directly resulting from transport historically? Hope you are OK also.

@Ahna65 wow, I can’t believe that under your healthcare provisions in the NL anyone actually entertains the idea that there are physical reasons that lead to behaviour and that there may be tailored therapy to address that. I’m familiar with excitation neurons and inhibition neurons etc but only from the ££££££ we have spent over the years engaging private practioners in the field of biomedical stuff. The nhs consultant just shrugs and says ‘it’s neurological’ with a big fat full stop after that when I’ve tried to explore what that means or how further info can assist DS personally. So I’m VERY interested if you don’t mind sharing an update. Does the dr recommend only therapies or other things (meds/ supplements) which many studies have shown help balance that excitation/ inhibition see saw? Do they do any tests to establish what is at play (I’m aware that bloods/ urine tests can indicate such imbalances). Again I’m really interested to know (as opposed to the standard nhs roll out of adhd meds as the be all and end all).

Had the pre visit call with the EP this morning which was along the lines of what was said upthread. She is seeing DS Fri, reporting back in the NY.

Wow, that's great Danni. Hope that you are both better soon.

Open Well done on your boy's swimming success

Ahna that appointment sounds v interesting.

I took DS for the cognitive element of his assessment yesterday. Unfortunately, they were not able to complete it as DS decided that it was too hard and wouldn't engage. He ended up just wandering around the building with the assessor.

I had a nasty fall in my living room yesterday and have badly bruised my big toe. Walking is painful. DS's response was to laugh loudly and to repeatedly try to enact my fall as well as repetitively asking if I was crying. At least DD gave me a hug. It was her nativity this morning and she did so well.

I think with regards to ds, it’s a combination of things, no stress of transport and them badly mismanaging him, he’s mostly chilled me taking him and collecting him, he arrives at school every day on time & in a calm mood, as I do my upmost to make it that way, then he had his medication increased about 6/8 weeks ago, also school have been doing some new things with him, one is a ‘percent o meter’ (he’s utterly obsessed with percentages) he says all the time things like ‘how many percent were you to telling me off’, ‘how many percent were you to this’, ‘how many percent were you to that’ always says the same at school too, so they set a percentage chart up on the classroom board and based on his behaviour it moves up and down the percent scale and if he gets 100% in a day he brings a certificate home that day. He really loves certificates from school so they use this to influence his behaviour,

Then we have a marble jar at home I got off Amazon, I’ll post a pic, he gets £1 for the first level, £2 for the second level, all the way up to £5 if he fills it to the last level, we count them up on a Sunday evening and award him whatever money he’s owed, £5 of course as the meltdown would not be worth it if he got any less, then we reset for Monday morning, he gets marbles in it after school for getting 100% and bringing any certificates home, plus other marbles for other things he does at home, that’s working well. (I could tell you some stories of what he thinks warrants earning marbles though 🤣🤣🤣)

Also santas watching him, of course, which he’s reminded of on a very regular hourly basis 😂 he loves Christmas, fully believes in it all, watches all the Christmas films, so I have that as regular bribe.

I’m pleased he’s being better, but this happened before at school, he had 3 month really chilled period at school, barely any complaints, followed by 6 months of mayhem. So I will take it for as long as it lasts. And I do hope it lasts.

dimples sorry you had a fall, ds is like that with me, laughs at me for hurting myself.

open well done to ds for swim certificates, ds got a 5m backstroke certificate couple of weeks ago from school, he’s done 2 x 1-1 private lessons we’ve paid for so far. In the hope he can be taught to swim on his front. Pain in the arse though as we could only get him in at the leisure centre across the road from his school so every fortnight on a Sunday I have to trek back up there, but oh well it won’t be forever.

Below is said marble jar, nothing special. Was a tenner off Amazon. You get the marbles with it.

Also his 1-1 swim lesson is £23 for a 25 minute lesson, I think it’s scandalous personally, but it’s important he learns to swim given he doesn’t have any kind of danger awareness, he’s learning slowly at school (2 and a half years of ‘weekly’ lessons and he’s only just learnt to swim a bit on his back) so I thought I’d boost him with a few private 1-1 lessons.

Yes @danni0509 we are paying the same for private lessons but as you say it feels a real risk w water. I don’t think the teacher does anything we couldn’t do (bc DD doesn’t follow instructions so it’s just a case of someone supervising her whilst she picks it up herself by feel) but we are really paying for the empty pool more than anything.

@carriebradshawwithlessshoes yes the approach from this doctor sounds similar to what you describe. They will look at genetic tests already done (they have a few new things they look for that wouldn’t have been screened for earlier), bloods, urine. They also want to do an overnight EEG to look at neural activity in sleep. Apparently often autistic regression can be caused by (or look the same as) some forms of epilepsy where the child has nearly constant seizure activity whilst they sleep and thus related development damage. But at this stage they just want to gather more data, I didn’t have the sense that he saw DD and immediately thought he knew where we would end up, he seemed a bit puzzled. I don’t ever love going through all the questions about her ‘problems’ , regression, same questions over and over about pregnancy, I felt quite drained by it after but I know we are lucky to be looking at this stuff. Yes Carrie in NL it’s covered, everything health wise for children is free.

on the EEG, I seriously can’t imagine DD tolerating one of those electrode caps let alone through the night. Has anyone done this with DC?

Ahna DS has had an EEG. He was uncomfortable with the application and removal of the electrodes. Although the clinician was lovely and put them on me and his toy pelican first to reassure him. Once they were on his head he didn't seem bothered by them but I still can't imagine him (or indeed me) going to sleep with them on.

We are paying a bit less than that for a 30 min 1:1 lesson. I didn’t think it was too bad as it’s the cheapest thing we’ve done so far. His teacher is only early 20’s but she’s great at coming up with different ways to redirect him when he gets distracted and tolerates his repetitiveness without missing a beat. She seems to be one of those people who’s naturally good with kids.

Ahna that sounds very thorough.

dimples ouch, I hope your toe is better soon. Hopefully ds learns a bit more empathy in time. What does the therapist say about it?

danni I know what you mean about enjoying it while it lasts but it still sounds like you driving him has made a big difference. How are you finding it?

@Ahna65 have her genetic tests shown anything to date?

re the EEG DS has had lots whilst awake, they only need 20 mins so he’d managed with lots of distractions. The last one was a purported sleep eeg but done by the nhs in the middle of the day so obv he wouldn’t sleep and pulled the wires off they are so loosely attached. With a full overnight EEG I think they affix more firmly. The nhs won’t do overnight ones as much as I’ve asked. We have considered paying for one but it’s around £4k

Dimples that sounds painful, hope you are ok x

@Ahna65 what do they say they are looking for or can look for if you don’t mind me asking?

@carriebradshawwithlessshoes I think they hope to find some sort of cause of her autism / behaviour that can in turn help to provide treatment/therapies. I think as some of us have said here before the diagnosis of ‘autism’ doesn’t really tell me and nothing from a medical perspective only the output behaviours. Although I did say what about environment , things that could trigger regression, and he said yeah we just can’t test for environment we don’t know really, so we focus on what we can know.

i think particularly with DD’s autism being regressive, they expect a link to eg a genetic mutation after birth or onset of epileptic activity or similar. But they did also zone in on eg her diet being 100% carbs. So I’m not sure and I guess they keep open minded til they have the data. The doctor is critical of patients not being treated in a targeted way, I think probably what you alluded to re the ADHD medication that is thrown out.

i wouldn’t say im sceptical but I don’t expect some sort of sudden revelation that changes everything. I think it will always be a combination of any medicine that makes sense as well as OT, SALT all the usual things. DH is way more enthusiastic than me, I think he just prefers a more medical / academic perspective but I’ve said to him I don’t necessarily find this input more or less valuable than eg the sensory profile that she’s done via her school,
if that makes sense?

Sorry such a long answer to a short Q.
you can read more here if you’re interested.
https://www.amsterdamumc.org/en/research/knowledge-centers/n-you.htm

and yes @dimples76 feel for you on your toe, I’m so accident prone it sounds exactly like something I would do and I hope it heals fast.

Ahna the diet thing is a bit chicken and egg isn’t it. I don’t doubt not getting the right nutrients can cause issues but the reason they’re not eating typically in the first place is due to sensory challenges, anxiety about change etc.

The evaluation all sounds very thorough, I wonder how the treatment varies based on what they find? FWIW I think your expectations of it are very grounded.