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

So glad to read that today was better Open.

Ahna my DS is not a fussy eater but doesn't seem v interested in food. As he has always been off the charts for height and weight I am always trying to encourage him to eat more without making demands. The appeal of Mum's food has worked well here - I only put some of the veg on my plate and then they ask to try it. They have tried quite a few veg that way and have decided that they like leeks and runner beans. My DC like serving themselves (so I resign myself to more washing up) and put the dishes in the middle. DS gets bored of eating after about 2 bites so I try to play games whilst we're eating, eg today we played hangman (with a spider not the gallows).

DS is driving me mad by making himself retch and bringing up sick the last couple of days - sensory seeking not ill. He used to do this a lot but I thought that he had grown out of it

My DS has lots of sensory stuff around food. He's up for trying more things as he's got older but still won't eat food that is mixed. E.g. he'll eat plain spaghetti and meatballs as long as they are separated and no sauce. Chips, wedges, waffles fine but never mashed or boiled potato. Texture apparently. No soups same reason. Always has certain foods every meal alongside main. E.g. he always has dairy lea triangle, carrots (must be raw), sweetcorn or peas, tomatoes. Then within that, I usually serve one meat and one carb. Will eat spaghetti but not other pasta. I work around it so we mostly all have the same meal bit, e.g. with the spaghetti bol, I'll plate up DS' and then mix and add sauce for me and DH. Luckily DS loves steak, chicken, etc so that's good. I'm quite fussy too I guess , lots of no go foods including mushrooms (hate the smell and texture) and some foods do genuinely make me feel sick to think about them (rice pudding, makerel). I have thr same thing for lunch most days. If someone gave me a mushroom risotto and said eat that or nothing else, I honestly couldn't eat it. So I am prepared to work around DS'food hates as otherwise he wouldn't eat either (or would end up surviving on a diet of grapes and dairy lea products!!)

Aw, there sounds some good foods in there for him @ElizabethBennetsBoots . I do love a mushroom risotto tho 🤣.

had a consult with DSs epilepsy consultant yesterday morning and am wondering aibu. I’ve mentioned her before she has a large no of children all with Sen and always brings into the convo how 3 can’t live independently, what a breaking pressure that has been for her family and so on. It was a tel con so she has no idea about DS, save for what’s on paper, she hadn’t seen him in years, none of the drs have. Anyway, you know how we have talked before about the ‘expect the worst’ attitude. Everything that comes out of her mouth is along those lines, esp adult care (her hobby horse) and I find it really depressing/ not helpful (DH says I’m depressed enough as it is.) I was quite snappy yesterday with her (DH was on the call too) and she then always says ‘oh…. Have I offended you? I’m just trying to help/ give future insight’ that sort of stuff. I’m sure there’s more negative shit written in her reports about me and DH than DS!

Anyway, I know we have talked about this before and the fact we all hope/ expect the best. She just really drags me down and makes me doubt the future for DS based on her professional and personal comments.

Am I being stupid/ over sensitive? Would you ask for another consultant or do you reckon in terms of their prognosis they are all pretty much the same??

@carriebradshawwithlessshoes if it really isn't working for you then you might as well ask for a change?

carrie ask for someone else if it’s not working out. But otherwise just stick to the matter at hand, which in this case is epilepsy. Don’t ask them questions about future outcomes, other than as pertain to the exact thing you’re discussing, and if they veer off track then bring them back or end the appointment if it’s finished.

That’s to say that it’s not helpful to engage with professionals on speculation about what will happen in the future when a child is still quite young. I have to say that it’s not something that’s happened to me but then we don’t see paed’s regularly and it’s not an opinion I have sought.

Frankly seriously doubting my own child’s ability to be independent and employed when he can’t even cope with a couple of hours at school. This morning was not great again. I am incredibly fed up with it all.

Thank you for that advice Open it is actually what DH says. As a general point in terms of future there’s a really lovely thread this morning on the main chat from a poster called incompletesen (I think that’s her name) that is really worth a read if people haven’t seen it already. Sorry I’m useless at posting links.

sorry to hear that Open. As I think I’ve probably clumsily asked before about my DS is there any particular or obvious reason as to why this was the case Monday and Weds but not yesterday for eg? Anything different?

I sometimes look at DSs school and think I wouldn’t want to be there either. I really don’t think school is reflective of how life will pan out (for a lot of NT kids either in fact). Hope he has a settled pm with you.

I know you have a good relationship with the EP and are linked in with her. Have you discussed these issues at all, what did she say? I know there was a big push for us on the EP being able to shed light and therefore advice on DSs presentation in school. If that’s a big part of what they do I would hope she could bring something to the table in terms of your situation?

Sorry to read that it's been another tough morning Open.

Carrie that speculation seems particularly inappropriate when the doctor doesn't even know your boy. When we had our epilepsy appointment last week DS was there and demonstrating a lot of his more problematic behaviours. So it seemed more appropriate that the Dr would ask about his other diagnoses.

I feel that my stress levels are ratcheting up. The council have sent me another form in order to keep adoption allowance. I have got to the section headed 'the impact the additional needs of your child is having' - I imagine that they don't want a 10,000 word response. I have booked tomorrow off work, sadly it is to do some painting but I am hoping it will let me re-set a bit before a condensed day at work on Friday before the neuro-disability assessment.

I don’t have a relationship with the EP, in fact still chasing her bloody report via the SENCO.

I think the main issue is ds’ refusal to always do his work, preferring to obsess endlessly about his favourite video game and pester the admin staff.

i need to speak to the SENCO again about what they are doing to engage him in class, how they are differentiating his work etc.

I’m just so fed up with it all. We have a good period only for it to all go downhill again.

@carriebradshawwithlessshoes I would try once more to keep her on topic and then ask for a different consultant if it's still happening.
@openupmyeagereyes sorry DS is having a tough time. Is it the build up of demands through the term do you think? As others have said, coping with school is not necessarily an indicator of adult independence but yes I understand the worry.
@dimples76 sounds stressful. Hope the day tomorrow helps.
I had my interview today and feeling very lukewarm about it all. I think it went well but the over analysis of everything and the constant planning has made me see why I left HE in the first place. I got so stressed last night too and blood pressure went haywire so I'm going to try and relax for a bit before pick up! It's made me realise all the good things about the job I already have tbh.
@carriebradshawwithlessshoes lol about mushroom risotto! I love any other kind of risotto, just not with the fungi guys in it!

Sorry cross post @openupmyeagereyes my DS is also difficult to engage in work that doesn't interesting him or he finds hard. He walked out of a class recently on doing up zips and buttons because it's hard for him and he told me it's pointless. They're quite good with him at school but I have asked th4 teacher to remind the whole team about PDA strategies as sometimes they were going awry and he had a huge stress out last week at home about it. Is your DS PDA too?

No I don’t think he’s PDA. He’s quite happy to do as he’s asked most of the time. He doesn’t melt down over demands. The teacher told me she uses PDA friendly methods in the classroom.

Elizabeth sounds like maybe you realised you don’t want the job? That’s ok.

I like mushrooms, they don’t agree with dh so I don’t eat them
often. I’m not particularly fussy, I don’t like fish or seafood. Or underdone eggs which is crazy since I can eat raw cake batter!

I realised when I made one once that tiramisu has raw egg white in it. Crazy how many things do have raw egg. Ds and I love a good cake batter spoon lick too! Thanks @openupmyeagereyes for normalising my feelings about it. I tend to forget that the process is two way.

It’s definitely two way. I turned down a job once, they were very surprised. It’s as much to see if they’re a fit for you as well as you for them. I think you definitely get a gut feeling.

there’s a really lovely thread this morning on the main chat from a poster called incompletesen

I had a look at this. Amazing for them and must be inspirational for you. She doesn’t mention how he was at school though. I presume not at all like my ds who seems allergic to school and work.

I’ll be less negative tomorrow when I’ve got over it.

ElizabethBennett'sBoots if the job interview has made you appreciate your current job then that seems like a good thing. Hope that you're unwinding now.

Open you wouldn't be able to cope around DS - he loves eating raw eggs! Just beats them up in a glass that slurps the egg up a straw - makes me want to be sick. On the other hand a mushroom risotto would be v welcome right now.

I can make the risotto if someone else deals with the mushrooms! If only we all lived closer and could actually do stuff like that!

If only ElizabethBennett'sBoots!

@carriebradshawwithlessshoes agree w open re narrowing it to the topic at hand. Although tbh I think we tend to ask in any appointment for predictions and almost everyone says they can’t tell. Although if we had a v negative response I’m sure is feel like you.

@openupmyeagereyes , sorry to hear it’s been so hard and to see you beat down by it - I usually have the sense that you take everything in your stride so it must be really hard for you to feel this way. Sometimes it is indeed a case of just writing off the day / week and waiting for things to feel better, you’ll know yourself they will improve and go up and down. But it can feel so hard and bleak. can you do something nice this eve even if it’s just watching tv or having a bath?

@dimples76 glad you have a day off but hope it’s not stress filled. I am not surprised you’re feeling stressed it’s a lot going on. I tend to go for bullet points on those types of forms (and in general! I’m a bullet points gal)

@ElizabethBennetsBoots would there be another interview? Just play it by ear i guess, well done for doing well at it tho!

Ahna I do try but it’s not always easy. Ds has been struggling with school so long it means having to write years off. It feels like we’ve made such little progress though I know, logically, we have made some.

He’s nearly 10 now and I feel beholden to try and make clear the implications of his actions to him sometimes. What do you guys think? As much as I know that he is autistic and can’t help some behaviours, I feel he can help others and has to understand that he can’t always just do what he likes when he likes. There are consequences in life after all.

Anyway, I don’t know the answer - where’s the magic professional that you can hire to fix everything when you need them?

If I drank I’d be having a wine tonight but I know I’d just feel worse tomorrow.

Open I'm so sorry you're having a low day today. I really feel for you but I have no sensible or helpful suggestions. For ds consequences for not going to school have no impact if he's made the decision it to go.

Good luck with the form dimples. I've just started the blue badge application becuase of all the extra driving I'm doing for ds now and I'm dreading yet another form.

Both my kids are seriously fussy about food but I was too as a small child. I got better as an adult but went vegetarian a couple of years ago cause meat started weirding me out.
*
Carrie* health care practitioners can be so thoughtless sometimes. I don't think they mean to be so tactless, probably think they are being helpful!

Well done in the interview Elizabeth. Like other's said it's two way. When I went for my interview recently I was unsure I was ready to get back into work but I really liked all the people interviewing me and it confirmed that it was somewhere I wanted to work.

I had to be away at a work thing today so DH had to take ds on public transport to school. He wasn't unhappy but it did take three staff members to help him in through the door to school. It will be interesting to see how it impacts him tomorrow.

liv I meant more explaining the consequences of having to leave the school, not getting an education, that sort of thing rather than punishment.

On reflection I think I’ve probably just made this into a bigger deal
than it needed to be. I have to accept that he will have tricky days and let school deal with it rather than getting involved. I need to think about it more.

Yes sorry open, it's been a long day and I probably didn't express myself very well. I didn't mean as a punishment at all just we tried to talk through the impact of what was happening on us and the family etc and I'm not sure ds took any of it in because he wasn't in the right frame of mind to hear it.

Also I think some days it does just feel more hopeless and a bigger deal.