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

Thank you. Sounds like you had a lot to deal with there @dimples76 . In terms of the kids DS is difficult as obv we can’t talk about it. DD was very upset initially but hasn’t mentioned it since then. She too is still talking in the plural, yesterday said ‘nanna and grandads’ gate. It was all just so quick. DH was talking to an older colleague who said at least dad wasn’t ill for years or had dementia, I suppose that’s true..

carrie people say that because they don’t know what else to say. It’s not ‘better’ because it wasn’t protracted. When I was about 17 my maternal grandmother died suddenly of a thrombosis. It was a massive shock, particularly for my mum who is an only child and whose father had died long before.

Was cause of death the stroke?

I think this is what I’m struggling with… he had an A Fib triggered stroke which was completely preventable had a GP diagnosed and treated the AF. I am not privy to dad’s medical appointments but I know he went for lots of check ups with the GP esp following his artery unblocking op 6 years ago. He was always having BP etc checked, if they had only done an ecg it could have been picked up and treated (even the consultant said that.) I know he wouldn’t have had another 30 years but I’m sure he would have had a few.

@openupmyeagereyes it was complications from the stroke (including the pneumonia) that was the ultimate cause of death. AF strokes are generally the worst and very hard to overcome esp at his age. Just such shame… so many medical things we can’t do much about but this was something that could have been prevented.

@carriebradshawwithlessshoes sorry for the very belated condolences- i am so so sorry to hear about your dad. Sounds like a huge shock and so hard for you all and your mum too. Agree with what’s been said re not needing to hide grief from the kids.

i don’t have close similar experience but can only imagine how hard. Do you have a decent stint off work?

Thanks ahna. Took a few days but really am better off working otherwise I’m just sitting here thinking about him…

Re the comments I think some people feel the need to try and focus on the positive. I did fall out with a friend who said 'at least you had plenty of time to say goodbye'. I said to her - sometimes things are just shit, no need to put a positive spin on it! On that note this video has always stayed with me and made me try not to say 'at least'

It is so hard not to think of all the what ifs. Obviously anger is a normal part of grief- just let it all out.

@Ahna65 how are you doing now?

Yeah that positive spin is really frustrating also in SEN stuff, indeed is default for people to respond in that way even when things are just going really crap.

im not doing amazing tbh. DD hasn’t managed to get to sleep earlier than 1130 for the last few weeks and we’ve had quite a lot of 2-6 type wakings too. Pretty killing. We may be able to get some support during a couple evenings a week but requires being categorised under a new law which is a long process and requires various reports. The latest of these we got yesterday and it just made me really sad to leave - cognitive function of around 9 months, overall 12-16months. Couldn’t disagree with anything that was written in the detail but somehow the age thing really hit hard. Comes in waves for me between feeling accepting / a bit emotionally numb, and then really emotional.

have been trying not to spend too much time thinking about the pregnancy stuff but when I do I do feel sad about it. DD2 is at an age where she’s constantly talking about babies.

how is everyone else doing?

Thanks for the video @dimples76 that’s a good one.

@Ahna65 i was hoping for positive things after the new meds, the name of which escapes me, buta…?? Is she still taking it, has it helped with anything? I hate these reports which are obsessed with ages and stages, we have had them too and my heart drops when you read them. I think because you never see your DC like that, do you.., you just see them as your DC not some child falling so low under expected ages! I think it’s hard enough as it is. In terms of sleep def look at meds, did you ever do that? I know you didn’t like the low dose melatonin but what are your reasons for not trying other stuff? Alimemazine and the like?

Ah sorry yes meant to update on the meds you had asked - bumetanide. Just not seeing any change at all. They said it could take longer so carrying on for now but yeah, not hopeful.

I think sleep stuff we haven’t explored more because generally it had improved, and I do think (sadly for us!) she’s absolutely fine on about 6 hours; I don’t think it would work to try and push her to sleep from 9pm for example. And because the night wakings are a minority of nights (or some weeks 50/50ish) it feels a bit strange to medicate for it. But maybe we should explore again, I think just keep hoping it will settle.

yeah it’s hard on the report - also filling in all those questionnaires about what you DC can’t do, or so many questions N/A etc. But seeing her age for things listed in months not years was hard.

Oh @Ahna65 , sorry that things are so tough. Those reports are not great for our wellbeing . Hopefully they will get you some more respite? It feels like reducing it to a number like that can't really reflect our spiky profile kids and their different strengths and weaknesses.

We are plodding along! In general DS is better regulated. The LD nurse came out yesterday to say that she is discharging him as they don't think that he needs any input from CAMHS at the moment. Felt a bit galling after telling her about his recent talk about hurting animals and my concerns about potentially inappropriate behaviour (for example he keeps staring at my breasts). But they were putting on me to say what I wanted from them. I said I don't know what you can offer but this is what is worrying me. Ugghh. In better news he also got discharged by the epilepsy team today after a year seizure free off meds.

How are you feeling @Carrie? Is it starting to sink in a bit more? If you feel up to it tell us about your Dad. What was he like?

Hi all

@dimples76 can you pinpoint anything that's helped with DS becoming better regulated? Inappropriate behaviour does sound tough though. Do you know others who experience similar (not sure how much in touch you are with school parents and such?)?

We are plodding along. Things feel quite hard but it is likely that we will get a bit more support in a couple of months when application processed (maybe a couple hours a couple evenings a week etc), which I'm very grateful for. DD2 was on the receiving end of a pretty bad head bang yesterday which was really upsetting but hard to avoid / predict - sometimes they come when DD1 seems perfectly happy.

In the last 3 weeks, 2 out of 5 of the mum's at DD's daycare have had their partners (the father of the kids) walk out. Makes me so cross / sad for them.

We have DD birthday coming up next week. I think I probably mentioned last year when we were invited to go to the daycare to celebrate and it was just a huge meltdown but they kept going through with their planned singing etc? It was awful and I truly don't want to go again but DH agreed at a drop off that we'd come. I find her birthday tough to be honest, at the moment there is really hardly anything to think of that she'd enjoy as a gift. Even spinners are no longer interesting for her, she spends her time just sort of 'swiping' on the surface of random objects. Which is not in itself harmful it's just that when people are asking me what presents she'd like, it makes me sad to have so few ideas. We will try and do something that just suits here - take her swimming or to the beach and keep it low key. I guess you just always look back on birthdays don't you.

2 weeks more work until I have 2 weeks off. We are going to do a road trip to France, but for the second week DH's mum has offered to have DD1 at our house, so DH will fly her back then we have a week just the 3 of us. Feel very mixed about that but equally no need to be a martyr when the help is on offer - daycare will continue and the nanny is on hand too, so it's just the nights / evenings which might be hard, and my mother in law is happy to nap in the day etc. I'm sure it will feel odd, but I hope it will help us to enjoy the week with DD1 in the knowledge that some down time will follow.

Well that turned out quite a long one! Hope everyone doing OK.

@Ahna65 I get that must be tough re the birthday presents. DS always asks for a whistle and a projector screen neither of which he gets and a giant soft toy polar bear from Ikea (he has 5 of these now!)
So I just buy things that I think might grab his attention or help him learn something. My success rate is a bit hit or miss. This year's hit was a second hand Turing Tumble - he loves it.

I understand why you feel mixed about your holiday plans but from an outside perspective it sounds like a good compromise.

We're fortunate that the local charity that DS attends every other Saturday is running sessions throughout the Summer. So apart from the week we go to Scotland there will be some respite each week for me. Even half a day helps.

I think DS's attitude to animals is quite extreme but the sexualised stuff I think is more typical of someone with DS's profile- always curious, very sensory seeking, not considering others needs and no impulse control. I do worry a lot about thus.

Moving up day tomorrow for both DC so not expecting tomorrow evening to be fun. DS's new classroom is still under construction though so I am not sure where he will be moving to ...I am a bit concerned that the school is expanding rapidly by creating more classrooms but the communal areas have not increased. I went to volunteer there on Tuesday and when I walked through the main building it felt very crowded and noisy.

Realised I didn’t answer your q @dimples76 . A friend once said no one understands your family as you do and I think that’s so true… when I was young dad was very much the disciplinarian but totally changed with the arrival of my DC. Both he and mum were completely besotted and (and in a way this isn’t good) enjoyed spending time with them (I don’t kid myself it was me!) over and above pursuing other interests as so many GP seem to do!! Babysitting was never asked for it was a fundamental part of their weekly enjoyment and if we were busy or whatever they would say how much they missed the kids! So he was a very doting GF and both he and mum felt day to day like a critical part of our lives (and support with DS.) Aside from missing him for him, this all now feels very weird and a total change in family dynamic. If that at all makes sense. I know it’s obv not like DH not being here but it’s like we have lost a massive support and part of our family unit.

@Ahna65 how did DDs burthday go? I do remember last years singing palaver.. was this year any better?? I also fully sympathise re gifts as DS has no interest. One year he was so disinterested I left half of them wrapped and wheeled them out at Xmas (when he remained disinterested.) I hate the assumptions about things like bthdays… that the DC is excited, or even really care. Mine doesn’t! He likes the gathering and the cake and the food etc but never the ‘yaaaay! It’s my birthday / Xmas’ thing.

@carriebradshawwithlessshoes it sounds like you and your children brought so much joy to his life. I do sometimes worry about my Mum and wish she would spend more time on her interests and friends. But I guess similarly to your Dad, being with family is what gives the most pleasure- I imagine that I will be the same if I am lucky enough to be a grandparent. You must all miss him terribly.

@Ahna65 hope that the birthday celebrations were not too difficult.

It is DD's birthday party on Sunday and I would quite happily fast forward passed it!

Went to a meeting re DN13 to support my sister with the SENCo and Ed Psych. The Ed Psych was really good and very supportive of my sister but she agrees that there is more going on than 'just' Autism and ADHD. We think possibly bipolar disorder (we have a family history of it). He is very depressed at the moment and on antidepressants. My sister is v scared and especially fearful about suicide risk. I wish that I had a magic wand.

Hello everyone, would it be OK if I joined you?

I used to be on MN ALL THE TIME but quit a few years back, I think there were a spate of trolls and I flounced off. Quietly sneaking back in now. Nothing scary like AIBU yet though!

I have a DS (12) with an autism diagnosis (plus some joint / muscular issues). I also have an 8 year old DD who is NT.

Struggling a bit with DS' pre-teen behaviour to be honest. 🙄

@dimples76 I hope your sister and nephew are doing OK.

Welcome @BellaGoth . Things are a bit quieter on this thread at the moment than in the past. Thanks for asking after DSis and DN. I ended up spending quite a bit of time with DN this week (as he wouldn't/couldn't go to school). He was on pretty good form and chose to sit with me whilst I was working, whereas he mostly chooses to be alone. My sister said that she thought he felt very loved by me. So it was nice to hear that I got something right as I feel with DS that he does not realise how much I love him.

Pretty awful behaviour from DS the last two evenings. He is ready for term to end. I am not!

Welcome Bella. How have you found secondary school so far? Is ds at a ms or specialist school?

dimples sorry to hear about your dsis and dn, it must be really hard. How do you go about getting a bp dx? Is there a long wait? How did moving up days go?

carrie I hope you’re doing ok.

Ahna how was dd’s birthday? I hope you enjoy your holiday.

We are well. Ups and downs but ds has had a much better time at school this year. He’s made so much progress, we’re really proud of him. He’s happy with his class next year, which is great too.

I’m really looking forward to the holidays

That's great news @Open.

The CAMHS psychiatrist who sees DN re his anxiety said that he can't be assessed until he is 16. I don't think that is quite right according to NICE guidelines- I am.going to look into it some more.

Hi @BellaGoth
Glad to hear so many positives @openupmyeagereyes
Hope you're doing ok @carrie
DS is also ready for school to finish @dimples I am too now I think. Got some interesting stuff planned for the hols and going away mid Aug. I like going out more often than DS though so I have to reign myself in otherwise we'd be out every day and then DS gets overwhelmed. Good day out in London recently and we're planning to go there for the Minecraft experience soon. He's moving classes next year to a more academic pathway and he's worrying about it already. I've had to have a word as they keep telling him off for small things and it's triggering him more, but am yet to receive a reply...argh, roll on summer!!

We've made it to the end of Year 7! Honestly this time last year I was looking at home schooling, so chuffed he's managed OK.

@LydiaBennetsBonnet Same here! DS would sit home all day given the opportunity. My younger DD is a social bunny though and wants to be out and about all of the time. Constant juggling act!

I think we might need to look at an English Tutor for DS, lord knows how he'll cope with "school not at school" but he's soooo behind and it's really impacting other subjects now.

How are you all managing with the holidays? Bit of a rollercoaster here and this evening has definitely been a low point. DS has been throwing things at me and calling me allsorts of delightful names (fat bitch and ugly idiot being his current faves). I was coming upstairs to help DD have a bath and carrying a glass of water. DS then appeared blocking my way and shouting at me. Not my finest hour - I threw the water over him. We were both shocked. DD has just gone to sleep so I need to go and speak to him but putting it off. Although I feel guilty about my loss of control I don't actually feel like apologising for it.

Hope that things are more peaceful in your homes

Hi all. Summer going mostly OK here aside from DS massively overreacting when asked to stop rolling or throwing heavy stuff inside. Raining again here today. We popped out to the local museum to meet a friend but it was so busy that DS didn't want to look around. We all had a nice lunch but it made me again see how different DS is to NT kids and it makes me feel I don't know, sad for him I guess as life is so much harder for him. Like my friend's DS is 2 years younger and listens and takes part in conversations more, his speech is clearer, he takes himself off to the loo etc. DS is so far from that and I think is very much on his own trajectory, just makes me feel for him although he is happy and I wouldn't change him, but I always forget how much less independent he is until we hang out with NT kids. They just seem to fit more easily into the world, you know? But none of us do! Back home now and snuggled up! @dimples76 sorry you've had a tough time, hope you're OK today.

Lydia I can totally relate to all that you said. For us the differences are greater as ds gets older. His NT peers lives are expanding so much but ds is emotionally so different, even though he’s nearly as tall as me now. Gah, can’t really explain it adequately without writing a book.

dimples sorry you had a rough evening. Did you talk to him? Does he show remorse afterwards? I hope today is better for you.

Bella is ds dyslexic?