Thread 12. Autism and any other additional needs.

[danni0509]

Thread 12.

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!

Just typing quick as ds needs to get ready for bed. I’ll link the previous threads later.

x

@carriebradshawwithlessshoes oo indeed well done on filling. We have first dental check up soon w the DDs, intrigued how that will go. Generally DD1 likes to have her teeth brushed weirdly- she likes having things in her mouth I think. Chewing all her clothes apart and eating her hair atm. Not the worst thing in the world but a bit grim.

yeah I miss watching series together but same, can’t do it with DD up late. Im
bad though, I end up watching reality tv on my laptop til past midnight to wind down which obviously isn’t helping my sleep deprivation. I have massive anxiety around going to sleep though, can’t shift it.

@ElizabethBennetsBoots i go through (short) phases of feeling the same, DD2 absolutely loves babies and it melts me. I know for us it would be a bad idea though. Luckily the lack of those intimate moments @bryceQ keeps it very much at bay.

@Ahna65 yes i know the feeling well! Our cat also makesit his mission to interrupt any stolen moments of intimacy with DH 🤣🤣

I always imagined I'd have two children but currently couldn't trust my son around a baby and if I'm exhausted now I can't imagine having two. It wouldn't be fair to our son his needs are really great. I'd say i have another 4/5 years to decide but it will likely be not

Then when you have one with sn’s you need to consider that you might have another and what that impact would be. Strangely ds has never asked for a sibling or why he doesn’t have one. I’m sure it will come up at some point. We did try for another when ds was much younger but it didn’t work out.

That’s the thing yeah. Chances of another high needs child coupled with possible negative impact on DD1 seem to trump DD2 (and my inner feelings). I know my mind will continue to go there for a while though.

I should have added, if I had a choice now I think the lack of sleep alone would put me off.

When I was pregnant I used to wake at 4ish and was unable to go back to sleep until it was almost time to get up for work. It was a sign of things to come

same @openupmyeagereyes ! But truly I didn’t know the meaning of tired at that point …

Ahna indeed. I always roll my eyes inwardly when people tell me they are tired (even though I know I don’t have a monopoly on tiredness and that dh and I share the load).

I mean just general people, not parents of autistic kids!

Do you mind me asking if you all work? I'm really looking forward to having a bit more time when my son goes back to school, I work freelance but I've hardly managed much this summer with full time care.

bryceQ I work part time (a 0.6 role). Although I am very frustrated about a lot of issues at work and have been on the same pay grade for 15 years I have managed to secure a working pattern that works well for my family. So I can do the school run every morning and 4 out of 5 afternoons and I am only going to need to work 1 day a fortnight during the main school hols. I feel stuck now as I doubt any new employer would be as accommodating. I am not half as good at my job as I was pre-children. However, one of the things that I have learnt through being DS's Mum is not to care so much what other people think - that has helped me in my workplace

I waste a lot of time worrying that I am not doing anything well enough - parenting, my job, looking after the house and garden, being a good friend. Right now I 'should' probably be completing the EHCP appeal form, reviewing one of my dissertation student's drafts, or continuing with painting the living room (which I foolishly started this morning). Instead I am snuggled up with the DC watching Tangled. Whilst I think this was the right call the jobs all need doing and if I get stressed about that then my own emotional regulation and ability to be patient with the kids suffers.

I don’t Bryce.

I do work, and it’s one of my fears related to all this that at some point I have to stop. My job is important to me and something I know I’m good at (unlike parenting). But I am lucky to have a very understanding manager and work from home half the time. I couldn’t have done it without that, when I think back to how I worked pre Covid. Some days im a zombie with the sleepless nights so I try and just be productive when I can. Sometimes means my best work for the day is 6am-0930…

also lucky to have a nanny to cover the afternoons bc DD finishes early. She was really hard to find but has made a huge difference to me and DH being able to work and not having that juggle at 3pm.

in theory freelance sounds ideal @bryceQ but I know I’d struggle to motivate myself at times. Hope you had a better night. We had 2-6am up. She’s sleeping now but of course her sister is awake…

I work part time but just applied for an amazing FT job. The ad said there was flexibility so we'll see!

Good luck with the job application ElizabethBennett'sBoots

Thanks @dimples76 it's remote so could fut hours in if I shifted day earlier but the school holidays are always the sticking point! My back still hurts and I have to do inductions all day long tomorrow sigh. Back to reality! Summer already seems an age ago! Roll on half term and Halloween!

@bryceQ I worked full time as a probation officer before mat leave and it was horrific to be honest, little flexibility, and excessive workload and demands. I just felt I was failing at absolutely everything. I’m going back to a different role on Monday at 0.6 with a lot of flexibility, family friendly and a manager who is very open about having a high needs autistic child himself which helps with understanding (sorry if that offends anyone, I never know the best terminology). I’ll be WFH for two days a week. I’m hoping it works for us all.

I think there are really progressive employers out there that would be supportive if you wanted to move away from freelance. I have a friend who does admin for pregnant and screwed around the kids varying school hours/reduced timetables and she’s found them really supportive.

@Ahna65 I really get that fear. How’s DD getting on with the new nanny?

@ElizabethBennetsBoots Good luck ☺️ I know flexibility is a bit of a buzz word at the moment but people do finally seem to be getting on board properly with flexible working!

In fun news, DS1 is smearing again. I’ve just found the bedroom covered. Could happily cry and am hoping we actually have enough carpet cleaner.

I do work and as others have said it’s my absolute sanity. I would go mad without that side to my life. As @ElizabethBennetsBoots talked about in a different context upthread it’s about becoming a different person, switching off from DS and doing a role that I know im good at where I can make a difference to a situation (unlike at home where I feel I have no control over how things with DS pan out.) when in the office I wear different clothes, I don’t really discuss the DC, I even have a different name as I practice under my maiden name. It’s an absolute relief to work. A million times easier than my unpaid job at home 🙄. Plus of course the money is nice 🤔.

I work 3 days but flex around others if needs be. I’ve a good junior team tho and have been doing the job long enough to know what I can delegate and where I need to lead things. Like anything sometimes it doesn’t work (school hols) but mostly it’s ok. We do tho unlike others have 2 lots of GP living locally and extended family who have always helped if needs be with the kids, esp my own parents and the kids have loved that involvement so it’s worked all round. Unless you have a non working parent or like @Ahna65 paid help I’ve never understood how people do a demanding job without family help even if the kids are NT!

im also lucky in that work are happy for me to wfh or in the office at my discretion. I’ve not been in since before school hols.

interesting other discussions! If DS had been my first child I would not have had more. He maxes me out emotionally and mentally, even with an older very capable NT DD she falls by the wayside more than she should. The demands of a younger child especially one with SEN would be impossible to manage and not fair on anyone.

DD is in a nervous state as she is starting secondary, a private city grammar (another reason to work!!) DS back Tues. I emailed the head intimating I wanted to discuss DSs progress over the last 12 months (or lack of it), I didn’t give that bit away In the email and she’s suggested a meeting. Any tips on how to structure if are welcome. I feel like going in all guns blazing, DH is more measured. Those on here a year ago will remember the statements school made to us around how much DS would change, would be able to communicate quickly, etc…would progress etc , well I see none of it. What they have done is accommodate him better than ms but not moved him forward at all. It’s v disappointing. And of course he’s a year older so more behind by virtue of that than this time last year.

im interesred to know if you agree with Danni that an EHCP is just an expensive passport to a SS (as opposed to specifying specific provisions which if delivered as section f sets out really help your child.) I’m still trying to get straight in my mind whether DSs lack of progress is due to an inadequate section f or not. That’s important I suppose for my discussions with school. Or if the reality is that a child will improve or not, irrespective of your section f provisions.

DH has suggestion getting some private tutoring and help for DS out of school (academic and OT/ SALT) at our expense. I’m not sure if that’s the right avenue though.

@Jaberwockky

Oh I'm so sorry. I have a smearer too. He will also try to throw his poop at me which is a delight. It always gets stuck in the radiator.

I had my own business before I had my son. Funny enough he was the easiest baby and I managed loads of work, then from 3 he became increasingly challenging as it's got harder and harder to work. It puts pressure on DH as living in London in an expensive area on one salary is far from ideal. Annoyingly I earn too much for carers allowance even though I look after my son for about 11 hours a day!

im interesred to know if you agree with Danni that an EHCP is just an expensive passport to a SS (as opposed to specifying specific provisions which if delivered as section f sets out really help your child.)

When ds was in ms it was useful as it provided additional funding for school to enable 1:1 support and they made lot of adjustments for him based on it - own quiet area, he didn’t have to attend or stay in assembly etc. Regular sensory circuits went to pot with covid and he doesn’t even get that at his SS despite it being in his EHCP though he is able to use regulation equipment like a ball pond etc. We never had SALT or OT specified in it when he was at ms but we had a private OT go in fortnightly and she was good.

I’ve yet so see an amended plan since his move to SS though school generally work towards the plan we agreed at his ARs. I have had to push them a lot though to ensure all provisions are being made. It took ages to sort out the EP involvement for instance, we kept being told it was happening and then it wouldn’t.

Ehcps are v useful at ms agreed are usually required for special placement. I think they're useful in allowing all the people working with ds to see his needs etc all in one place and will legally entitle us to fight for access to other services etc if he needs them in the future. Hopefully will also open up access to different types of post 16 education and training, depending on what he wants to do by then.

Sorry, holidays were s bit full on and haven't kept up with this. I do work but think DD's needs are less than some on here and she can manage mainstream childcare if I choose carefully and avoid too many days in a row. I have a brilliant childminder which she finds easier than after school club.
Saying that I only work part-time mostly from home and have a very understanding boss who doesn't mind me shuffling days around.
I'm in the depths of the EHCP process at the moment so hoping it will make a difference. Bit disappointed it's not done for the start of term but knew it wouldn't be as still have a few weeks left on the timeline. EP report seems to suggest mainstream with 1-2-1 but doesn't say how many hours.

@Jaberwockky its going well w the new nanny thanks. She’s such a warm person and seems to have a real connection w DD. I like her so much more than the 25 year old we had - she’s in her 50s but very energetic. She goes out and about with DD on the bike which suits them both I think. Really hope she stays a while.

we’ve had smearing too, yesterday eve. I find it soo hard to handle. W DD it’s sort of absent minded - nappy off before we notice and then a huge mess. Not sure she actually plans to smear or not. She takes her nappy off all the time anyway, it’s a nightmare- originally thought maybe a sign of
readiness for potty training but think that’s v wishful thinking ! I know it’s not her fault but i struggle to keep calm when she does this.

What do they wear as outer wear? When the Dc were younger I loved dungarees, also for DS trousers with buttons, tight ish ties on trousers and shorts etc. The smell would usually be a give away long before they could get those things off/ hands down….

Onesies for nightwear???