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Thread 14 - Autism and any other SEN

503 replies

dimples76 · 15/08/2024 18:56

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

OP posts:
openupmyeagereyes · 18/09/2024 16:26

That’s good to hear dimples and well done re. personal trainer.

carrie I think it’s not unconquerable but takes hard work and diligence, at least to initially lose the weight. Coupled with the extra stress we experience as SEN parents and often lack of sleep it can be harder.

I was always a slim pear too, quite athletic. I’m currently a stone heavier than I was pre-ds. The first half pound I yo-yo’d up and down but another half a stone has crept on over the last year and I now have a belly which I really dislike. For the last 3 months I’ve been following programmes with an American trainer who specialises with 40+ women and covers exercise, nutrition and mindset. I’m about a week into the 3rd programme where you start to use weights. I’m a lot stronger but haven’t lost any weight yet - I’m not following all the nutrition recommendations. I’m hoping building muscle with the weights will help. There are daily exercise videos but it’s very manageable and builds up very gradually.

carriebradshawwithlessshoes · 18/09/2024 18:47

Oh that’s interesting @openupmyeagereyes . I don’t think a stone is bad at all though over 11 (?) years and from mid/late 30s to mid/late 40s. I can put that on over Xmas!! 🤣. I don’t brave the scales but I’d say I’m at least a couple of stones heavier. Weirdly the vast majority of women I’ve known in their 20s and 30s are significantly bigger in their 40s. I think I’m part of the issue in that pre marriage how I looked was up there in terms of size and importance, getting into size 10 jeans was important for a night out. Now in the grand scheme of things it matters less if they are a 12/14 I suppose.

it’s funny tho how everyone seems to get bigger save for my one gym bunny friend. They can’t all be eating more! It’s a bit depressing!

LydiaWickhamsBonnet · 18/09/2024 19:22

I started running and that helps with weight loss and emotional health (I feel so good after a run!) But I'm 5 ft and very hourglass shape (and love chocolate and wine) so I'm never going to be all super thin and willowy,and I've made peace with that! I think it's when my clothes stop fitting, I know I need to run more and eat less cake!
Still up and down with DS and school. Parents evening next week so will see! Got mansplained at at work today so had to regain control of a project, urgh.
The oddest thing I've had recently, which I wonder is a sign of perimeonpause, is really painful ovulation. I've always had bad pma pain, and occasionally felt ovulation, but lately it's crazy. Better today, but yesterday was so weird I could really feel it! I looked it up and apparently it can be like the ovaries' last hurrah as they start firing off the last few eggs! Typical ha!

LydiaWickhamsBonnet · 18/09/2024 19:23

Pms, ha! Even autocorrect doesn't want to talk about it!

openupmyeagereyes · 18/09/2024 19:41

Lydia I’ve always felt it in my right ovary more, I think the left one must be quite lazy!

For me, a stone means I don’t like how I feel or look but I appreciate it’s different for everyone. I think weights are really important to preserve muscle mass as you age and that helps keep your metabolism up.

dimples76 · 18/09/2024 20:02

Well I have always been big but I am conscious that I have really slowed up and my stamina is less. It wasn't until last week that I realised how much strength I have lost too. I got a years gym membership for £54 through the Council's carers so that's good. I am just focusing on strength with the PT. I was terrified to go last week and was totally out of my comfort zone - the gym is a unit on an industrial estate and it's all weights with a handful of cardio machines. The PT is lovely though - he has been training my nephew for a few years now.

In terms of how I am fitting it in Carrie, I am basically bunking off work! I am on a research sabbatical until mid January and have my PhD viva in 2 weeks. I can work at home all the time which saves a lot of time as I normally spend at least 1.5 hours a day commuting.

OP posts:
carriebradshawwithlessshoes · 18/09/2024 20:25

Fair enough Dimples, that sounds a plan!

Open, I think the thing with weight gain is the baseline changes. So for eg I was prob about 10 stone when I got married, then relaxed a bit after the wedding and put on a few pounds… then got pregnant with DD and never quite got back to where I started but had 2 years of being that weight. Then had DS and never quite got back to before I had DD… and so it goes on so you lose your baseline.

im 47 and I do know for my 40th I went to Cornwall with DH and wore in a posh restaurant a size 10 LK Bennett dress, it was A line and Kate Middleton wore the same one for some event. I have finally got shot of it and given up as for the last 5 years I’ve not been able to zip it up it’s like my whole torso (right word?? Where your bra fastens) has just got wider.

Justploddingonandon · 18/09/2024 20:43

LydiaWickhamsBonnet · 18/09/2024 19:22

I started running and that helps with weight loss and emotional health (I feel so good after a run!) But I'm 5 ft and very hourglass shape (and love chocolate and wine) so I'm never going to be all super thin and willowy,and I've made peace with that! I think it's when my clothes stop fitting, I know I need to run more and eat less cake!
Still up and down with DS and school. Parents evening next week so will see! Got mansplained at at work today so had to regain control of a project, urgh.
The oddest thing I've had recently, which I wonder is a sign of perimeonpause, is really painful ovulation. I've always had bad pma pain, and occasionally felt ovulation, but lately it's crazy. Better today, but yesterday was so weird I could really feel it! I looked it up and apparently it can be like the ovaries' last hurrah as they start firing off the last few eggs! Typical ha!

I've finally recovered enough from long Covid to start running ( very slowly) again and hopefully lose the weight I've put on, but I also forgot that running makes me absolutely ravenous so then eat loads which probably explains why I haven't lost any weight.
Not been posting much as DD seems relatively settled at the moment, although now she's in year 4 definitely feels like high school and everything that brings is looming.

openupmyeagereyes · 18/09/2024 20:48

I used to run years ago but now it’s too much for my pelvic floor. So I try and have a walk every day and I’m strength training too. Weight loss is mainly about diet though and that’s just an ongoing struggle. I’ve made improvements this year but I’m still snacking too much.

carriebradshawwithlessshoes · 25/09/2024 14:57

How’s everyone doing? Following on from opens last post I’m snacking on a biscuit which seemed a prime time to post though not a great deal happening here. DS is fine atm, nothing good or bad to report, trudging on!

Ive a couple of days off so am doing a house super clean, I’ve had better times for sure. Do you all have cleaners? We have had, off and on, but found the tidying up before visits and then other stuff quite a hassle. Some were useless, others just wanted to chat as I’m wfh when they are here. The last one kept knocking on my office door at home and shouting ‘Sandra??’ to engage in a bit of chat. I’m not even called Sandra…

anyway it’s just me for now though the day flies! DS home in 45 mins, time just goes. Hope everyone is well.

Ahna65 · 25/09/2024 16:25

Haha @carriebradshawwithlessshoes the Sandra thing made me laugh. We have a cleaner, she's great, I wish she could come more. Feels like it only stays clean half a day when she's been but she does the stuff I just cba with doing (mopping floors and such).

Our week is going OK, fairly uneventful which I guess is good. DH went to a sensory / regulation course last night, cant remember how we heard about it. He said it was so basic just absolutely nothing new learned, but he did say that 3 years ago he wouldn't have known any of it, so I guess that is something to take away. Had delivery date for DD new bed confirmed in a couple weeks. I'm a bit nervous how she will take to that - it's one of the big rigid wooden box type ones. The current one she has is more flexible (which has become a problem as she can lean on it and flip it) - it's only intended for travel really. She absolutely needs to be enclosed otherwise would just be running and climbing all night but I do think we should expect a teething period for the new bed.

Well done all on your exercise regimes. As I think you know running keeps me sane (ish..!). Still notice weird body shape changes with age but I guess that's just not avoidable. For me it's a saggy bottom! After pregnancies it just went and stayed flat - used to be quite pert! I don't really care most of the time I guess.

dimples76 · 25/09/2024 21:34

Would love to have a cleaner but can't afford one - I really need to get on top of the housework.

I went to the CAMHS NHS course on Saturday. I am so glad that they condensed the 8 week course to one day. Sadly like your husband Ahna on his course I didn't feel like I learnt anything. It was quite a tense day as there were a lot of angry and frustrated parents. The training materials came from Barnados and I think a lot of it was quite poor and very patronising. Any way the good thing is that I have ticked that box so should now be given meds appointment for DS ...I won't hold my breath!

DS has had a pretty successful week - I have just found a bunsen burner licence in his bag (are they crazy?!) At the weekend we started the new swimming lessons (DS 1:1 and DD in a group). I had quite low expectations of how well DS would engage but I can honestly say that I have never seen him apply himself like that before. The teacher said that he had made progress within the class.

In other news my viva is a week today - I wish I could hit fast forward as I keep waking all night and having lots of nightmares.

OP posts:
dimples76 · 03/10/2024 13:10

How are things everyone?

Things are a bit lousy here. I have covid, was meant to have my doctorate viva this week but it was cancelled 4 hours before it was due to start due to one of the examiners being ill. I have had quite a lot of calls from school re DS's behaviour- nothing unusual to me but they seem a bit flummoxed with how to deal with him which I wasn't expecting with special school.

I am live streaming the Global ADHD conference this afternoon. Anyone else watching?

OP posts:
openupmyeagereyes · 03/10/2024 14:54

Oh no, so sorry dimples I hope you’re not too ill. Terrible timing.

That sounds very much like carrie’s experience. We too have had to give school strategies to use. It’s a bit frustrating but I guess after all these years we are experts too 🤓

openupmyeagereyes · 03/10/2024 14:58

Going back to the previous conversation, we used to have a cleaner before we moved to our current house and I quit work. She started off ok but got lazier and lazier so I was glad we moved and I could manage her out without confrontation. These days there’s too much crap of ds’ everywhere, plus me at home anyway.

dimples76 · 04/10/2024 09:42

I agree Open and I was complaining that there was no communication and I really want to work with them. But now I feel like there's too much, it's all negative and at a bad time (school ends at 3pm, they often call at 3:30 but that's the time I normally arrive at my Mum's to collect DS from taxi). I have asked if they can call between 9 and 3:30 otherwise I am wrangling 2 children but they don't seem to have taken that on board.

School sent a message to everyone saying that they are reviewing the class groupings next week which may lead to new class arrangements after half term hols. Makes sense but I am worried about the impact of more change.

DS has been on pretty good form at home but he was very challenging last night. In the end DD and I locked ourselves in the bathroom and I thought that I was going to have to call for help as DS's rage seemed unending. However, DS moved away from the door so I was able to send DD downstairs and went to speak to DS in his bedroom. He had a cry and I hugged him. He seemed much calmer (more fool me) as we walked back downstairs he punched me on the back. I am still ill and feeling pretty worried about how to keep us all safe.

As is my habit, I have bought a new book - Brain Brilliance: 60 Nourishing Recipes And A Nutritional Toolkit Nourishing Recipes And A Nutritional Toolkit For Dyslexia, Dyspraxia, ADHD, Autism and All Neurodivergent Dyslexia, Dyspraxia, ADHD, Autism and All Neurodivergent Children
Have any of you read it? Not sure what chance I have of getting DC to eat those meals but worth a try, perhaps!

OP posts:
openupmyeagereyes · 04/10/2024 10:14

dimples what’s happened with CAMHS strategies and with the group sessions ds was attending? Sorry you’ve had a rough evening.

That book sounds great but ds would not go for it sadly. I had a friend who put her ds on that diet which cuts out processed food, dairy and gluten etc. I just looked but can’t remember what it’s called. GOTS or POTS or something similar.

openupmyeagereyes · 04/10/2024 11:50

GAPS diet. It was bugging me!

carriebradshawwithlessshoes · 04/10/2024 12:15

@dimples76 im sorry you are unwell. I absolutely hate this period of sep to Xmas as we are always, without fail, unwell with one thing or another. Sometimes I wonder if a particular vitamin concoction may help but I’m not sure. We survived the first 2 weeks of term and I was getting complacent but then true to form it all started… I know people say oh, it’s only a heavy cold etc etc but when you have a DC who cannot say that their throat/ stomach etc hurts it is invariably reflected in behaviour and generally just a shitty horrible time at home. I was on a Teams with multiple clients on Weds morning which I knew was about a 2 hour meeting, literally 7 mins in my mobile (on silent) is flashing with schools number. They then called Dh who text me… can I get DS, he’s hot, coughing, hysterically crying etc. that’s then a huge distraction and I can’t just cut off the call. DH was in work I was wfh so it had to be me.

what are school moaning about @dimples76 particularly? I would have thought that a child who ms have kept throughout the whole primary school life can’t be behaving that badly surely (given that I know how desperate/ quick DSs school were to get him out, they would have had him gone in under a year had they had their way.)

re times for calls and content of calls I’ve had to be quite firm about this. We now have a scheduled 10 min catch up every other Fri at a pre arranged time. I’ve made it clear I don’t want to hear in between! Sometimes I actually wonder about the intelligence of these people (I know Danni used to say about this) as if a client said to me don’t call at x told I wouldn’t call at x time, it’s not rocket science. You are probably going to have to be firmer and then if it’s just moaning for moaning sake and not life or death don’t answer.

schools current theme (on which I’d appreciate views) is DSs level of mouthing non edibles. They want him to have chews in school and I don’t. He doesn’t have them at home and from my observations at home it’s almost like a habit/ go to, as it even if he’s sitting happily chilled and I hand him something, I can see him raise it to his mouth almost without thinking. Often he does similar things without mouthing, eg he may tap a pencil or whatever on his lips (or a toy), almost like he’s doing it without thought. I say erm, DS?? (In a jokey way) and he grins at me and puts it down. Nevertheless without wanting a barrage of criticism can I actually stop him doing this? Would you be happy to just give blanket approval for your child to be sat with chews all day????!!!! I just feel it’s such a step back from what and where I thought they were trying to move him to.

re the diets I’m a bit sceptical tbh. Long before I wrote on here we tried for a very long period gf df with DS and have tried it intermittently at times since then too. I have not found it makes any difference at all to him. Of course there will be children/ people with food intolerances and so on and a diet change would affect them massively but otherwise I haven’t seen it. Subject to the caveat that I try and feed them healthy stuff that we all know we should be eating even if it’s masked in something. For eg both love pesto pasta which they will eat in abundance even with an array of veg and salmon mixed in with a shed load of cheese. Both love cheese and I’ve worked out they will eat most things if a bit is sprinkled on so that’s an easy win. Though I do like books like that @dimples76 as they can have some good recipes/ suggestions generally. I freely admit I’m a rubbish cook so do need ‘thread through the needle’ sometimes with recipes/ new ideas! 🤣🤣

dimples76 · 04/10/2024 15:12

Carrie I can understand where you are coming from - especially as you want to encourage speech. Does he actually like the chews? My boy has never chewed anything that I bought for the purposes of being chewed! He has always favoured his fingers, cuddly toys and clothing. But school's approach is understandable too - if he has the urge to chew, give him something safe. Coincidentally I heard the author of the book I mentioned presenting at the ADHD conference yesterday and she claimed that people who mouth inedible things often have a zinc deficiency and that supplements have reduced/eliminated that behaviour. Going to order some for DS as I don't see what harm it can do but not holding my breath

I have been trying to reduce our consumption of ultra processed food. Which is going fairly well but I am lucky as DS will eat a wide variety of food (DD is a bit trickier).

Open still waiting to hear the pearls of wisdom from CAMHS...

The issues school have contacted me about include:

Him pulling his hair out
Refusing to write
Not following instructions
Zoning out in class
Struggling to dress himself after PE
Smiling when receiving warnings about behaviour
Making funny noises
Burping a lot
Correcting other children

So apart from the hair pulling the other things seem very every day SEN to me and not that bad (compared to violence at home).

Do any of your DC have Tourettes? I think that DS probably does

OP posts:
openupmyeagereyes · 04/10/2024 15:14

The issues school have contacted me about include:
Him pulling his hair out
Refusing to write
Not following instructions
Zoning out in class
Struggling to dress himself after PE
Smiling when receiving warnings about behaviour
Making funny noises
Burping a lot
Correcting other children
So apart from the hair pulling the other things seem very every day SEN to me and not that bad

100% yes. If no issues with the above he’d probably still be in ms?!

carriebradshawwithlessshoes · 04/10/2024 15:27

I was just going to say, is this a very high functioning Sen school/ class then?? (Sorry I know we don’t like HF term but you know what I mean.) All (including the hair pulling) sounds very to be expected in a Sen school isn’t it (and far worse??!!!!!). Are they mad??! In fact DS has started faffing with his eyelashes and I googled that and somehow got directed to general hair pulling which it said was v v common?! So what planet are they on??!

I have heard that too about zinc. DS has been tested tho and he’s not deficient. I’ve also tried zinc drops before and it makes no difference. Can try again for nothing I suppose!

he will often mouth/ touch his mouth with whatever is in his hand at the time so yes, he would chew a chew stick though not in preference to anything else. It’s almost like his ‘go to’ reaction like I suppose people crack knuckles/ bite nails etc.

carriebradshawwithlessshoes · 04/10/2024 15:29

I can’t say about Tourette’s although I do find the line between things like that and just enjoying making the same repeated sound with a sensory/ stim foundation v blurred and hard to differentiate tbh.

dimples76 · 04/10/2024 18:18

I am glad that you agree Open and Carrie. And Carrie no, it is not for academically able pupils. They have a few that do GCSEs each year but it's not the norm - it describes itself as for Autism and moderate learning disabilities. No contact from them today but DS told me that he had been sent to 'the Hub' (3 warnings and then sent out to reflect) for blowing raspberries (on himself). Seems a bit excessive to me for my very sensory seeking boy. Trying to keep an open mind and conscious that DS's account may not be wholly accurate!

OP posts:
openupmyeagereyes · 04/10/2024 19:01

Well if accurate it does seem harsh. I’ve seen worse at my ds’ school.