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

Also I’m a right hormonal cow. I’m awful when I’m due on and in the week after, dh keeps calling me Cathy (from emmerdale 🤣)

I’ve heard sertraline can help with that..

Danni that’s funny. Slightly aligned to me being too unwell over HT to have a drink. It did occur to me the other day whether my bad head/ other symptoms may be alcohol withdrawal… 😬

I haven't ever taken ADs but I do think that I will contact the GP this week. I wouldn't say that I am depressed but I am stressed and anxious and I can't sleep. Or rather I can sleep but wake up every hour or so - so I don't think that I am really getting much deep sleep. I always think that my feelings are a logical reaction to the problems that I am dealing with, so how will drugs help? However, one of my friends with a v challenging boy says that it just helps her stay calmer and that helps her feel better about herself (as she doesn't have the guilt after losing her temper with him).

DS loved Stick Man - the smile on his face when he was clapping along was priceless. However, afterwards as we headed home he was a nightmare- shoving and hitting DD and the cousins. I just can't work out whether we should do things like our theatre outing today or not.

I have my appraisal at work tomorrow. I have a new line manager who is fairly new to the university. From a brief conversation last week, it is clear that I am listed on the faculty spreadsheet of doom of people underperforming at research. However, he sees his role as helping me to get off the list (by publishing) whereas I am coming more from 'they can shove that list' angle and actually recognise that I am only 'failing' because their expectations for me do not take into account my circumstances (adoption leave, part time hours, high teaching load, completing a doctorate). I am a bit worried that I will lose my temper tomorrow (due to the sleep deprivation, general stress and feeling it's unfair). I do think that I would have a case for indirect sex discrimination. Should I tell him about my folder of evidence that I keep at home! ...Hopefully it is my anxiety that is building the meeting up to more than it is ..

@carriebradshawwithlessshoes sorry you’ve been ill. I caught absolutely everything last year and so far this time a bit less - I have been better w doing multivitamins and vit c but I also think probably built some immunity to the nursery germs. I recognise how you feel and also the challenge of where to start with therapy. My new job offers access to free therapy for 30min sessions - I think it’s intended more with a fixed goal in mind (working on a particular relationship, for example) but im
going to give it a go and try to break up my feelings. Eg one week maybe I will try dealing with guilt around DD’s regression, another week tips to help me be more patient / improve relationship with DH. But it is a bit daunting.

for now I run a lot and that’s my ADs - if I have a week I can’t I feel horrendous.

I think all of us on here need something probably, it’s rough!!

@dimples76 good luck today! Losing temper could be not the worst as long as not too extreme (sometimes with me a small trigger means everything comes flooding out !!!)

And yes @dimples76 re the sleep quality. Obv Dd partly to blame but I also just sleep badly now. I wake up not breathing and have tried getting help on that but doctors agree it’s just anxiety (I agree tbh). But yeah rubbish not getting proper rest , good idea to see your GP.

carrie I have a few thoughts. Firstly don’t feel conflicted because others may have it worse. Everything is relative and that doesn’t mean that you are not allowed to have feelings about your own situation. You only have to see on MN how much angst people have over their NT kids and it’s nothing like what you go through as a parent to a ND child. They still find their experience tough and that’s ok.

Secondly, I think neurodiversity is harder than rocket science; the laws of physics and mathematics can get you to the moon. People far more clever than us have not yet worked out why some people don’t talk. Brains are just so complex. So don’t beat yourself up that you haven’t yet solved the problem. I think that’s putting far too much pressure on your shoulders, there’s only so much you can do.

Re. AD’s, maybe you can find one that works with no side effects. Explore finding a psychologist to work with if you think it would be helpful. I think just talking to someone non-judgmental helps and they will be able to teach you some coping strategies too.

I always think that my feelings are a logical reaction to the problems that I am dealing with, so how will drugs help?

dimples I think this is key. Often people are anxious or depressed for very good reasons in the present (or due to past trauma). Helping the situation would help the symptoms, but in our cases that help is usually so hard to find.

That’s not to say drugs won’t help, I guess they work by reducing the severity of your response to the situation. But they’re more like a sticking plaster aren’t they.

Sorry, ‘key’ wasn’t really the right word. My point was that yes, there is often good reason for people’s anxiety or depression. It’s not neurotic or purely chemical.

At the risk of killing the thread, I would just say don’t discount the impact the perimenapause might be having too. Anxiety and poor sleep are classic symptoms.

dimples I feel the same with what you said regarding how will drugs make your situation better, I say to dh ‘what I really need is ds to behave better and stop giving me all these problems’

I feel fine when things are fine if that makes sense? It’s actual situations that make me depressed rather than me just being depressed.

Anyway from what I’ve read they just help you to cope with those same problems better, so I’m trialling it, the first time I did a few years ago I lasted 6 weeks before I stopped so never got the chance to see any potential benefits.

Thanks all.

Dimples, how did it go? I must say I’m flummoxed by how different things are in lecturing, so is ‘prestige/ success’ purely about publications? Not the other things you mention (heavy lecturing role, how good you are at lecturing in fact, doctorate?). When we think back to the lecturers who made a difference they were the ones with the best lecturing styles, relationships with us as students and who could connect the text books with the real world of clients and problems, not what they published, but am I out of the loop?! What is also different is any criticism around you not doing what they perceive as the things to do to further your career. Does anyone want to further their career working PT with young kids? Sorry Ahna I know you are doing this but in my experience at work very few women do (I can think of one currently) but that’s absolutely fine with our employer, it is what it is. If they pushed the career path with our PT female members of staff with kids there would be a big exodus! I think they would actually respond with ‘I’m not interested in career advancement right now with young kids etc’ and that would be perfectly fine and expected?!

Ahna, you mentioned running before. You sound very fit. I’m very unfit, I think if I set off I’d be keeled over someone’s wall having a heart attack or something 😬. If I’m tired I do the obvious (cup of tea, biscuit, book given the chance). I know how tired you are so I take my hat off to you that you have the energy to run. That said there are a lot of runners around here and it always seems a vaguely good idea at the time but I would (literally) never get going..

Open, thanks. I’m still not completely convinced I’ve done all I can for DSs speech (despite school saying everything is being done for it.) Theres just no one to talk to is there about these things. I think as a parent you would never live with yourself would you if there was something that you hadn’t unearthed that would resolve our kids issues whether that be therapy or medicine, even if it was something outside the box. The NHS won’t entertain any ‘out of the box’ discussions or offer anything. Does that make them ‘right’? DH says it does but my personality and interest in DS means I never accept that. Isn’t that inherent in any parent?? BIL (senior hospital medic) came over last night, he was talking about how frustrating relatives are when he tells them their mum/ son/ daughter is going to die and they want a second opinion or resist it. That would be me, always looking beyond, above, out of the box… hmm food for thought.

carrie then I guess it possibly comes down taking a very methodical approach, perhaps listing what therapeutic or medication options there currently are and then questioning whether you’ve tried them/whether you’ve tried them for long enough/with the right person and keep going with them until you get the desired output. All the time keeping abreast of new research so you can add that in. Maybe detaching from it a bit will make it a little easier.

I think as a parent you would never live with yourself would you if there was something that you hadn’t unearthed that would resolve our kids issues whether that be therapy or medicine, even if it was something outside the box.

it depends on what you mean by ‘resolving our kids issues’. I know that there isn’t an intervention that will make my ds NT so that’s not something I’m looking for. You might not agree with that.

dimples I hope you had a positive day.

Sorry open to clarify I meant speech specificallly for us.

Have you looked for an independent SALT recently? I know you haven’t had much luck in the past, maybe you can find someone more progressive.

I hope back to school went ok for those back today.

Ahna & liv I hope the new jobs are going well.

Ds had a good morning at school. I had a chat with his teacher this morning which was nice. She talked to me about how they are supporting him.

Open the supposed best SALT in our area by coincidence went in-house to DSs school just as he joined. As with the Head I don’t dislike her and she talks the talk very well, especially around how they are on every possible new development, new research etc and they continue to try and encourage DS to speak. But yet (and DH would jump down my throat and say it’s not their fault) he doesn’t, does he. So is what they are doing good enough?

DH says he doesn’t think this is the right environment for DS to start to speak (if he ever will) he thinks it is at home via me. We saw a hugely expensive dyspraxia expert a while ago privately who recommended at home (ie via me) mouth exercises etc. it was tortuous, and I saw very little from it, it almost killed me off. It’s failure and my lack of mental energy to sit with DS at home to try and get him to vocalise appropriately is something DH brings up often. Maybe AD would give me a new lease of energy with all that who knows.

Carrie unfortunately your understanding of how my university operates is spot on. Apparently, we should all be constantly striving for promotion and churning out international leading research. My achievements in teaching are not really valued (outside my teaching team colleagues and students). However, prior to the meeting I sent my new line manager a copy of my unsuccessful sabbatical application. I think he thinks that I was robbed as he said it was hard to fault. He also said, 'I'm sure that people say this to you a lot, but I think that you're a dream employee '. I almost fell off my chair in shock - it is literally the first time since I became a parent that a senior colleague has praised my work. I barely slept at all last night because I was so worried - feel a bit silly now! Thanks all of you for the supportive messages.

Carrie I was just wondering what your DH's strategy is to help with DS's speech. I get that feeling that you need to believe that you have done all that you can to help with it. But I wonder if it is achievable to reach that state - I think that Open's suggestion (that you list all the available strategies and then systematically go through each one) makes a lot of sense.

Danni that makes sense re the ADs. Definitely worth a go

Open I think that I may well be perimenopausal but I doubt I will get anywhere with the GPs with that as my cycle is still as regular as clockwork.

Last question then I will stop talking about TALKING but there are a zillion and one articles online, often American, often looking very legit which talk about lack of speech being linked to something like a seratonin imbalance, then the links to seratonin supplement. I’m useless at attaching links but there was one which stated just that, plus a dopamine supplement and then lots of testimonials of the 15 year old who had never talked starting to talk after taking these things.

DH says I’m mad to even contemplate buying/ giving DS such stuff. 4 years ago I may have agreed, now I’m more desperate. Obv this is ‘outside the box’, NHS won’t entertain such things. So I’m really on my own with it. That’s what I was on about really Open upthread.

dimples to answer your qu DH would want me to sit with DS and link things to sounds and then using writing or sometimes mouth manipulation with things like talk tools get or try to get DS to repeat. So say a sweet to try using a talk tools implement to get DS to produce the sound eeee then he gets the sweet. Or ooo for juice. It can take just ages though and is frustrating for me and DS and often he just looks at me and genuinely I can see doesn’t understand what to do or what I’m wanting. It’s soul destroying really and a million miles away from the parrot style jabber that you usually see in kids.

carrie why can’t dh do this with ds if he thinks it will work?

Good question. He says I can get more out of DS/ DS is more responsive with me/ I have a better bond with DS. That is true I have to admit. Convenient for DH though.

It may be true but it doesn’t mean your dh can’t share the load.

What was your feeling about whether it could work based on what you did of it?

I think done intensively it could yield results to some degree, some people say once some progress has been made it can snowball. School are/ were geared up to this in SALT sessions but haven’t achieved anything with it.

I do think though that it takes a lot of work, a lot of patience, the mental strength not to crumble when it isn’t working, the mental resilience not to give up, not to cry, not to get frustrated and shout or fall into a huge depressive hole. Probably therefore carried out by someone with some distance of emotional detachment to DS. That’s where I failed, with all of that.

dimples this manager seems a vast improvement on your previous one. Congratulations on the well deserved complements, it must have felt good.

carrie yes I can see it might be easier for someone who is more detached. Can you hire someone to do it with him?

I had a catch up with the SENCO this morning who is chasing various things for me. Ds has a block of weekly sessions with OT this half term and she wants us to agree some targets. I was thinking about him learning some strategies he can when he starts to feel himself in the yellow zone. I’m not sure how realistic this is. What sort of things would you guys be looking for? OT is engaging with whole class approaches to things like fine motor etc. so it doesn’t need to be things like that, though I will double check with her.

@openupmyeagereyes Is DS able to recognise when he's heading towards yellow?