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

@dimples76 despite the adhd diagnosis does your DS sit for meals? This is something we struggle with and holiday has emphasised it! So he literally shoves down food and then is screaming to get up/ go. It has spoilt mealtimes.

Re the childcare issue I don’t know what to do. I think there’s various things at play, even if I said I wanted hols unpaid they wouldn’t allow it as it’s not ‘fair’ on all other parents with kids who then have to take on my work. A colleague when I tentatively mentioned this rolled their eyes and said ‘wouldn’t we all love that.’ So it’s not about money and losing it it’s about those gaps being conducive to the job. I think unless you are in an educational setting probably most jobs don’t lend themselves to this. Even if I was working in the night the client still needs attention at 10am the following day so I’d end up just working double bubble!

Yep, I've found lots of part time versions of what I do that would fit, but nothing makes up for those holidays when you need weeks off especially in the summer. Even if you work remotely, the summer is hard re careers. @carrie could you freelance instead and take on clients in term time or would that still not fit? Ipsea often advertise for qualified legal staff, and charityjobs website has lots of legal jobs advertised?
I used to work in a university and there was no way that I could have gone termtime only(that was made very clear) but I just don't think people get the childcare issue. I was told to take some time and sort it out, like I just wasn't organised or something, but they just didn't get that there are no childcare options that fit!!
First day back went mostly well. Hope it did for everyone else too. Lovely that you and XS had such a lovely day out @dimples76

Totally understand where you are coming from @Carrie. One of the reasons I left the law - I was fed up at being at my clients' (mostly property developers) beck and call. I was considering an in-house role for a while which would have been better. Although I often moan about my job I am conscious that I am very privileged. I remember when I took time off as a solicitor returning to work would be a nightmare with mountains of files puked up around my desk with phone messages and mail. As well as tons of email. Now when I take leave I still have the email issue but students/colleagues expectations are very different.

DS is totally different to me re food. I love my food but he is not really that bothered. Naturally he is more of a grazer and easily gets bored at the dinner table. So, I don't ask him to sit at the table with me more than a couple of times a week. When he does or if we eat out we normally play a game during the meal, such as Uno or taking it in turns to be challenged not to laugh.

@LydiaBennetsBonnet it's frustrating when others just don't get how difficult organising childcare is. I think that I am very lucky with my team, I think that they do understand how much I am juggling and that it is not just a matter of throwing money at the problem.

Ah yeah totally agree on the juggle of work. Since we have had the dream nanny for 3 of the days after daycare that's been a lifesaver for those. And I'm definitely lucky (1) that my manager lets me work pretty flexibly; and (2) that DD1 doesn't have the long school style summer holiday (I guess one of the only pros that she is not in a school setting). It's all a sacrifice though isn't it, I do look around at peers with a lot more career progression and mourn that a bit but I think I need to be content with things as they are for now.

Yeah @carriebradshawwithlessshoes you'd think the head banging hurts her too but I think to a different degree. When she's having a meltdown I think she is hurting herself indeed but I just cant figure out all the times that she seems reasonably regulated. She just doesnt come up to me for anything other than to punch me / head bang me at the moment. It's really striking and DD2 has started commenting on it too. My reactions are getting faster to it, but I feel on constant high alert!

Hi all. Am reading, will post properly when I get a chance.

How's everyone going? It was going really well here but now the demands are starting to build. DS had a horrible afternoon yesterday due to mishandling of a situation that escalated things (someone mentioning earlier behaviour which upsets him) and today he's been very low apparently. Sigh. Does anyone else get really fed up of keep telling schools how to handle things and then them just not following your advice and wondering why things don't work?? Like I've had 'oh sorry it wasn't a usual ta' and 'oh yes that teacher doesnt know him as well'...like read the notes then. Honestly I just feel exasperated two weeks in. The long term fatigue of the sen parent!! Just wondering if I'm alone!! Today the teacher asked how to get him to join in without it being a demand. Like welcome to thr last decade of my life!! I thought they'd all gone on pda training so...perhaps DS doesnt even fully fit that?! The problem is he thinks he's a grown up already. They were moaning about him being rude and I said yes he will do that to feel like he has control back. They said could I have a word...I mean I will, but its the control element rather than anything I say and it might make it worse. Arrggghh. Rant over anyway, sorry, I just thought this year might be different but still. DS is watching Mr Beast vids and wants to be a YouTuber so maybe he'll do that and we can all stop worrying about what other people want us to do in, I don't know, another six years!!!

@LydiaBennetsBonnet I've all but given up with the school now, I never get a response anyway. They won't even consider an EHCP because "he's fine at school". Well that's great because he comes home and throws furniture at me.🙄
He's gone to school this morning with his orthotics boots on (win) but not tied up (fail) because "he doesn't need to be nice to people. He doesn't need anyone". When I pointed out that he might need me to tie his laces he stomped off and claimed they were fine. All good fun.

It's a bloody good job my daughter is an easy child or I'd lose my mind!

@LydiaBennetsBonnet how are things, sorry for the delay in response, it’s been really busy here. I think as a general comment a lot of people in life incl DSs school do what they want to do and it’s very hard to change that. Absolutely they should understand pda and surely all staff should be consistently trained on it so whether it’s a teacher who knows your child or not their approach is the same, surely? Do they switch staff often though, DS has the same all year/ term, why are they chopping and changing? Playing devils advocate at least they think he’s capable of joining in etc if they are asking for input on how to do it, I think for DS they have no expectations of anything other than glorified childcare and don’t care really if he joins in or not! I hope things have settled down.

we are ok, looking forward to HT after a busy work period. I’ve taken it off for once so unsure if to go away, running it to the wire so will either be no availability or a super bargain we will see!

Hello everyone, sorry I’ve been awol. I hope everyone is doing well, half term for us after today.

We had a relatively quiet summer for one reason or another though it was nice and ds has grown loads over the last few months, physically and definitely in maturity too. At the end of summer he helped me wash my car, something he’s not been interested in before, but also something I’d have avoided because our drive is open to the road and I’d have been too worried. Things like that are a lot easier now in many ways, though I still have bad dreams of losing him in public. Does anyone else have this?

He’s has a great half term at school too so things are very positive here for now.

I have his DLA renewal to do so am not looking forward to that.

That’s all great Open! Was he/ is he a wanderer, DS used to be, now I think it’s more lack of awareness ie would step into a road that bothers me. When we are out I do always hold his hand and as he’s still small i get away with it, but I think I can’t do this forever. When his school bus pulls up my car is parked in the drive and DS runs down the path and goes in himself through the front door. A few weeks ago he did this but ran around the front of the car and back up the drive to the road where the bus was reversing, I had to charge back from the front door! Things like this are an issue and I never fully trust him as he would have run straight into the road I’m sure.

half term for us now too. @dimples76 i was thinking about you as DS has just started guanfacine, he’s on week 2. Most things don’t work for him but so far I’ve been impressed, he’s a lot calmer, more regulated and a lot happier, just more focused on tasks in hand and so on. I’ve been pleasantly surprised. It’s nice to see him so independent with a lot of things I would have to do before.

Hope everyone else is well!

Glad to hear that guafacine is working for your DS @carriebradshawwithlessshoes and to hear all your positives @openupmyeagereyes .

We're tootling along okayish this Autumn. Having a complete nightmare with the taxi firm (4th one in just over a year). A change to the route is planned for after the hols so fingers crossed things improve.

A rather shocking development is that DS has started puberty. I say shocking because Endocrinology and Urology both had advised that it would not happen naturally (due to problems with his testes which have been operated on 4 times). He came bounding downstairs a few weeks ago to inform me that he 'has hair on his balls' and did I want to see?! I am concerned that he is at once very vulnerable and also potentially a risk to others. As he is so petite and young looking his physical development and his emotional/social/cognitive development have never seemed so out of kilter.

DS has also started 'diagnosing lot of other people with ADHD

dimples notwithstanding your concerns regarding puberty, which I totally get, your ds is so funny!

carrie yes, ds has been a runner in the past so I’m always keeping a close eye on him.

He is constantly making me laugh @open

DS seems to have tunnel vision- He saw some family friends on the other side of the car park last week.and just ran over to them, in front of a car. Fortunately the driver was going slowly and reacted quickly. But DS did not appear to see them at all/ have any recognition of the danger he had been in

He is constantly making me laugh @open

DS seems to have tunnel vision- He saw some family friends on the other side of the car park last week.and just ran over to them, in front of a car. Fortunately the driver was going slowly and reacted quickly. But DS did not appear to see them at all/ have any recognition of the danger he had been in

That’s the problem, the impulsivity. Ds knows how to cross a road safely but he doesn’t always remember in the moment.

Hello to everyone on this thread. I’m always lurking but rarely contribute.

I'm very interested to understand more about @carriebradshawwithlessshoes ’s experience with Guanfacine. Is this something you have managed to trial privately without an ADHd diagnosis?

my daughter’s really struggling at home with anger and frustration and we’re all feeling it. Daily violence has become normalised unfortunately and I really need to stop it before she gets any bigger and stronger (she’s 10 and just started periods)… I’m forever adding to a referral form for the local autism and learning difficulties CAMHS but I don’t think they are goi g to have any tricks up their sleeves really as she’s “fine at school” (special school) so I’m wondering if medication is what’s needed and if I can bypass waits by throwing money at the issue I definitely will!

happy half term all!

Hi all,
Yep all fine here, pottering along. Carved pumpkins today after having a pumpkin event filled weekend! Hopefully going to the theatre tomorrow then more pumpkin picking on Fri before Halloween celebrations, then hoping for a quiet ish weekend before school starts again and im back to work. Applied for a new job that is similar but diff direction, so excited but the pay is much lower and cost of living going up...and I know it sounds a bit much but I like living the way im used to living. Oof hard to know! I have started buying Xmas things for people already in an attempt to get organised this year. Raining a lot today and I've only just got the kitchen clean from pumpkin carving, so having a sit down to play some board games now. Hope everyone is doing ok, and that half term goes well.

@Dorothyparker010 our route to guanfacine was perhaps a bit unusual. Around 4 years ago when DS was around 6 like you I was v curious about adhd meds and whether they would be helpful, it was a time when his ms school were forever on about his impulsivity and being unable to sit etc etc so we found a private provider adhd 360 who did a remote assessment which tbf I think if would have been pretty hard to conclude there wasn’t adhd in at least some format for DS! Although I was keen to crack on and try the meds I did at this time get DS on the CAMHS wait list but had no intention of waiting 4 years to move forward! Via adhd 360 we tried medikinet as a stimulant then strattera as a non stimulant, both had side effects (can go into more detail if you want to know) so we parted ways with adhd 360 and I forgot about adhd meds really until DS’s name finally came up on the CAMHS wait list a couple of months ago. I told the full story to the CAMHS nurse and she said the last med to try was guanfacine (I don’t know why adhd 360 didn’t mention years ago but I think there’s a min weight and suspect DS was below it then.) Because we had a prior diagnosis CAMHS took account of this and didn’t do a full reassessment.

imo both adhd 360 and the cahms team have been really good though it is nice to see someone in person and know they have seen DS.

Thanks so much @carriebradshawwithlessshoes that's really interesting. I think I’d better get my act together and finishing the CAMHS referral form. I tried going private but the people we chose wanted to do a full cognitive assessment before the ADHD assessment and I didn’t want to at the time (no confidence that it would show a true reflection of her abilities, but I should let that go now probably). Has your DS had this too? I’m starting to think it’s the first step to getting the right support. No idea why they don’t do it during the autism assessment though.

no they didn’t do that testing @Dorothyparker010 ! Have a look at them. How does Dd present, is she verbal, ok with self care etc? Periods must be hard… I say as a mum of a nt DD who found it hard enough at 11! Even if you also get on the v long CAMHS wait list as we did…

Oh great, yes I’m definitely going to check them out then! Thanks @carriebradshawwithlessshoes . My DD is verbal although has real struggles with pronunciation and word recall so it’s difficult for her to be understood outside immediate family. She has DCD which makes everything so hard for her. She’s generally independent though, self care wise. Unless she doesn’t want to do it of course! She very demand avoidant but we’ve been told not PDA but instead anxiety-based avoidance. She really struggles to understand the world I would say, it’s like he’s just been plopped here on earth and is like “wtf is everyone doing and WHy??” So constant questioning of why people are doing this and that down to why people are standing/sitting in a specific way, why they said a specific word, like she constantly hyper fixates on stuff that is totally inconsequential. It’s absolutely exhausting for me/us so her x100 I expect 🫣. It’s like she needs a reset/off switch for some of this and I feel like that might need to be medication as I’ve tried all the regulation stuff I can manage.

i would love to see some “academic” progress too as that seems to best so slow. She’s a good reader but basic maths is a real challenge. Partly because she has no interest maybe but also concepts are hard for her to pick up.

Regarding periods, it’s not been the world ending nightmare I was expecting actually but only really because of all the teen period pants that are available now, that can just be worn all day. Also being at special school means lots of support for her. I have glossed over questions about “why” periods though, glossing over the baby making part as I’m just not ready for that and the connected questions really 😢

Hi, can I join? I have a child who is severely affected by Autism and I’m incredibly worried and stressed.

Greenpeanutsnail what’s causing you the most worry and stress? How old is your child?

I hope back to school is going ok for everyone. So far so good here though ds is not keen on getting ready in the mornings.