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

That's it, isnt it @open? It's so hard to pit your finger on, but the differences are there. Makes me realise how much I mask in company and work (I used to even more) just to fit into a world that requires certain conventions and social rules to be followed.

Thanks @Lydia and @Open. Repairing went well. DS apologised before I said anything and when I said sorry he said not to worry as he did need to cool off!

It is so striking when you spend time with NT children how different life, is isn't it.

We had a mostly good trip to the coast today but it was rather marred by DS pushing DD over on the sand and then kicking her when she was on the ground. I really struggle to get help with this. Everyone just seems to take the stance that all siblings fight. As one of four I know it well but this behaviour is completely different to 'normal' sibling conflict. DS is twice DD's age (12 and 6). The challenge for me is that the violence is very hard to predict. One minute they're giggling, rolling down a hill together and the next DS is hitting DD. I hate to think what this is doing to DD and I am worried about DS's future with these violent impulses. Aggghh - almost a third the way through the hols.

Heard from school transport today with details of the new provider. Fingers crossed that it is not another logistical nightmare...

When we all write on here I think we form views of what the DC are like and to be honest I sometimes wonder if I should post as my DS sounds so much worse than anyone else’s child! I think when i read esp Lydia and Opens posts your DS sound pretty much NT to me, or certainly a lot nearer to that than DS so it’s interesting when you comment as you have in your last posts about various things. I stopped socialising with friends with NT kids a long time ago… still socialising but not with the DC present! Which is awful and really sad but for me it would make for an unpleasant outing. Even today I’ve been out with the kids and everyone has been chiming up to DS ‘oh, how’s the school holidays going?’ Etc etc. obv met to a silence! DS just smiles back so we then get ‘oh, is he not having a good day? Is he shy??’. I can’t get away quick enough…

on the flip side of this… dd and I have been away and yes, it’s just so different. She’s a grown up 13 year old now and it’s almost like going away with a friend! Then we came home and had a week on the south coast with both kids which was great to a degree but trying in others. DS has resumed his ‘odd’ noises which he did off and on throughout the hol. I’ve googled this to death and there seems no answer. I remember Danni saying there’s no answer and you have to just wait for them to get bored. Which is annoying in the house but is just impossible in public as no amount of telling, reasoning, talking makes any difference. And it’s guaranteed to get stares from everyone who is in the vicinity which I hate.

Dimples, you are a great mum… it’s really difficult. I hope as our kids get a bit older they do become more mature and things change.

a bit of exciting news at our end, well for us. DS has started to say a few things!! Not loads but requests, things he wants!! There’s no reason as to why now, people have asked me. And I’m not counting my chickens but even the basic requests are very welcome!! So let’s see.

Enjoy the rest of the holidays ☀️

That's exciting news @Carrie!

We have odd noises here too. In particular DS makes squawky and screechy noises which go right through me - it's worst in the car as I can't distance myself. Now when I ask him to stop he says that he can't due to his ADHD, Autism/Sensory needs! He usually says this with a grin!

Ha ha, does he do it in public dimples?? That’s when I find it hard. Such as in the street/ restaurant? Other than fleeing I don’t know what to do??!!!!

car… the radio goes on, full!!

carrie that is AMAZING news!

🥰. Let’s see!!

Amazing news @carriebradshawwithlessshoes how wonderful! DS makes noises too and shouts inappropeiatelynif hes excited in conversation. This bothers me less as I feel like it's just who he is, but seeing him with an NT boy today just made me really see the differences in social communication. It's not a bad thing, just different. But the world is all geared up for NT people.

On a separate note, has anyone been watching And Just Like That? Ive really enjoyed it but apparently it's ending soon!!

Lydia I loved SATC but have never watched And Just Like That, I keep thinking I should.

There are so many layers to neurodivergence aren’t there. All of which form part of an individual’s presentation - asd/adhd/dyspraxia/dyslexia, executive function skills, learning difficulties or disabilities etc. etc. It’s rarely just about one element, and some individuals are deeply affected by a number of them. So while my ds is not at the more severe end for any of these things, he’s still quite different to a NT child and both his and our lives are very different.

When I post that things have been going well, I always mean ‘for us’ because this is just our norm, it doesn’t mean that our lives aren’t affected or that things are the same as if he were NT. It’s not as hard as families who have to deal with smearing, or masturbation or a child that trashes the house constantly or is NV but it’s not typical or ‘easy’ either.

As someone who has a group of friends who all met partners in their 30s and before that had a life of cocktails, great jobs but dating disasters I LOVED SATC hence my user name though in reality I’m probably more of a Miranda than a Carrie. I watched (only recently) AJLT (first series) which made me laugh although def less relatable now (in some parts, not so others). We have rubbish TV channels so waiting for the recent one to go onto Prime, DD checks for me most nights!!! If anyone knows let me know!! Glad you enjoyed it Lydia!

Charlotte was my favourite character in SATC; I would have loved to work in a gallery. I had a corporate job so also more like Miranda I guess.

Hi everyone just catching up

@carriebradshawwithlessshoes that is amazing news!! Want to hear more.. what does his voice sound like? Is it a daily thing now? Really huge development…

we have been on holiday, first week all of us and then 5 days without DD1. It was hard to say bye to her (for me not her, can’t even get a hug or anything like that) but I didn’t find the rest of it too hard , strange at times but relaxing. DD2 enjoyed it , she spoke about DD1 a lot but she seemed to understand the ability to have more of a holiday and we were all stressed after the first week I think. Some chats with DD2 where she spoke about not wanting a sister who can’t talk etc, or wanting a different new sibling, which is hard to hear (especially in context of past year) and comes more often and I still haven’t refined my answers to it enough probably.

MIL did really well I think it was intense but luckily still daycare during the day.. a couple of very bad nights (2am starts) but she napped in the day. She basically just cleared her whole week for it and followed around DD in the eve, lay with her til she slept etc. Sadly she did get a black eye from a nasty head bang which I feel awful about, she didn’t mention it when we were away.

pre holiday had a check in about the bumetanide, mentioned we haven’t seen changes but then ran another EEG and we will hear this coming week if any physiological changes. Discussed sleep medication too again and they suggested upping melatonin dosage and trying it again as has been a while, we did this but it was terrible she was up most the night. Has anyone here tried slow release? I know it’s the pill that has to be swallowed albeit a little one. Doesn’t seem feasible for DD.

Ahna ds takes slow release tablets, but he’s ok taking them whole. He’d struggle with a liquid as he wouldn’t like the taste (most likely).

How great of your MIL to give you that time away. Remind me how old dd2 is. It must be hard to hear those comments from her. Are there any sibling groups in NL like there is Sibs here?

Dimples how is Ds today?

Dh and I have been catching up on some little jobs that we’ve put off for ages and I’ve done a charity shop drop off.

@Ahna65 i think slow release melatonin is the norm, the pill is tiny, its not like taking a tablet, would DD even know it was there if hidden in something like yoghurt and then washed down quickly by giving a favourite drink quickly thereafter (say out of a water bottle?). MIL did well… if she is able can she not make this a regular thing, have DD once a week or other week, say, or come over to babysit to give you and DH a few hours break? Given all you do the rest of the time I wouldn’t feel guilty about that if she would? DD is her grandchild and she would be supporting you all, as discussed prior certainly in our family the buck has never stopped with parents when it comes to children responsibility (thank god!). She sounds great.

Are there no school hols in summer for DD1? Schools seem to run a lot longer than here.

Re DS there is absolute hope you see… yes, he’s saying things daily. He’s always been vocal if not verbal. The first thing that happened was after we were playing in the garden he hauled me to the swing and said ppppp. We then worked on pppp shhh and so we then got push. He then kind of got it and started with other things… crrrr sp swwww t for crisp and sweet, he has fiddle toys which we call twiddlers so we quickly got tttwww for twiddlers. Out for outside. I’m just atm trying to make a big thing of it for him to try and expand and do it more….now I know he can do it I’ll hold the swing still until he says ‘push’, so that sort of thing. He’s then spontaneously asking for the things he can say.

carrie it’s amazing and will give people hope, I’m sure. Ds is, what, 9 now?

Exciting to see how it develops.

He turned 10 last week so yes, this was all just before that birthday

That's so great @carriebradshawwithlessshoes it does really sound like solid foundations to build from. @Ahna65 that does seem to have gone very well with MIL. Tough to hear that from DD2. I have similar talk from DD sometimes. She often says that she wishes DS was not in the family. Further complicated by the fact that she has 2 bio 1/2 siblings.

@carriebradshawwithlessshoes DS does his annoying as hell noises vocal stimming anywhere. I generally just ignore when we are out an about unless it's somewhere like a library in which case we make a sharp exit.

@Ahna65 re hugging, DS used to avoid hugs and kisses. It is only in the last few months (and he is 12 now) that he seeks out hugs - quite weird as he just seemed to decide one day that he likes deep pressure hugs. Now we hug several times a day - previously he would tolerate me putting an arm around his shoulders and kissing him on top of the head as a greeting/goodbye.

It has generally been a good day with DS. As I typed that @openupmyeagereyes I thought of your post, I do mean good for him. I had my Mum, sisters and families around for brunch and it was just quite chilled. When we all get together we always have a good laugh so I guess that helps create a virtuous circle where I feel better in myself and therefore better able to cope with any challenging behaviours. For about an hour DD played with her cousins in her room and DS lay on the sofa on his tablet. The adults were able to talk without interruption - this never happens!

I used to love SATC but I don't have Sky so haven't watched the sequel. I have been watching a very odd/intriguing Korean reality programme on Netflix called 'Better Late Than Single'. About people in their mid-20s who have never dated. Some of them present as ND whereas others have experienced trauma.

I took the DC to a SEND gymnastics class yesterday. Bit of a mixed bag but overall a positive experience. The teacher was asking (and demonstrating) the class to take up different positions standing within a hula hoop. When it came to a star shape one of the boys curled up in a ball and observed to the teacher that stars are spherical 😀

@Ahna65 @carriebradshawwithlessshoes @openupmyeagereyes @LydiaBennetsBonnet @GrouchyKiwi @livpotter how are you all? How have your summers been?

We have had some great times but I do feel exhausted and am totally broke. DS goes back on Thursday and DD on Wednesday. For the last few days both of their behaviour has become more challenging. I think DS will be fine after a few days - he has the same teacher as last year which I am very happy about.

Good luck with the return to school

Hi hi @dimples76 good to hear from you. Sounds like you are all ready to be back in the routine. DOn't usually hear about DD behaviour being difficult - just ready for school do you think? Did you get away to Scotland this summer (I think it's usually Scotland?)

Schools went back here last week already, but DD1 doesn't really have a summer break it just keeps going apart from if we take her out for holiday. Quite grateful of that to be honest.

We are doing OK. My current battle is around slow release melatonin. The pills they prescribed are too big for her to possible swallow whole (not sure if I've already been through this.. sorry if so) but slenyto, the tiny one (thanks @carriebradshawwithlessshoes !!) isn't available here even though it is approved to be prescribed etc. It seems like we can probably buy it from an online pharmacy (at quite a high cost but definitely worth it) but still need a prescription. So I'm in a back and forth trying to get that - I don't see what the issue is if they already prescribed it just for a different pill. But I think it would make a huge difference for us so I'm pushing.

In other news DD1 got reclassified under a different law here. A bit complicated but basically now it's the 'long term care act' which means there is the expectation of care needed for life, rather than the youth act. This means we get more hours of funding, probably going to equate to about 20 hours a week. So that's every day after daycare 3-6pm and then probably a couple of evenings and more weekend hours. It's an odd system here in that the idea is that the state does effectively fund everything and to be honest I feel kinda guilty about that sometimes but at the same time this will make a huge difference to us feeling like we are not just in survival mode, I think. Of course these things are always a bit mixed emotions as having a conclusion that she needs lifelong care and sits on the extreme end of the various classifications is not encouraging but a bit numb to those reports by now. Now it's just a bit of a puzzle to find people to fill the hours - the current nannies we have are at their DD1 limit I think so we are busy looking. A couple of leads to explore.

DD is same as ever really, latest thing that is difficult is the head banging - she's been doing that for ages but I find she targets me specifically, and likes to do it on my knees and my shins which is sooo painful if I don't catch it in time!! Any tips?! I've tried to offer my hand palms or something more springy / soft but she just wants my legs!!

Wishing everyone a good week ahead!

@Ahna65 I totally understand where you're coming from re the additional support. I remember when I first applied for DLA I thought that I would have a fight on my hands and when they awarded it, it felt rather bittersweet. Hope that you can find the right people to provide the respite.

DD's behaviour is far easier to manage than DS's but she does have her moments. She is also copying from her big brother, in particular swearing. She has very big emotions. It is hard to unpick what is happening with her - how much is it her make up, how much being exposed to violence in utero, how much growing up with DS's volatility.

Re the head banging, I have not dealt with that (yet!). I mostly rely on redirection and distraction but I appreciate that your DD has fewer interests so that might be harder to do.

All ok here.,, just finishing a week in Croatia which has been (mostly!) good and as its end of season everywhere is a lot quieter. School hols have been hard, essentially I have needed 3 days of childcare for 4 weeks taking account of booked holidays, I just don’t know how people are supposed to do it… no club options for DS, he can’t be left alone etc. I can at a push manage a quasi DS/work from home day but that still leaves 2 days. Previously mum and dad would have stepped up and I have a cousin who helps and is great with the kids but she’s not been around this summer and obviously mum is now an hour away with no transport. Plus DS is a 2 person job given their age. I’m now thinking is 48 too young to retire?! But also thinking how our lives would be so different without my salary, also I bloody like work sometimes it’s the best thing going! So I don’t know, I hope DS is going to become easier but every year I feel he isn’t.

we have an adhd meeting in Sep which I wasn’t sure about in terms of resuming different meds but I’m thinking now that we should. DS behaviour at times really hard… stuff like he keeps taking off running down hotel corridors, in the pool etc and literally would just go without chasing, I feel a right idiot. Then last night I was showing him the buffet and asking what he wanted and he just lunged at it with his hand, I grabbed him just in time but I’m always on tenterhooks. Never relaxed. Meanwhile all my friends tell me how they have now the kids are in double digits not moved from their loungers on holiday, read 20 books ffs… (before that the same as the kids just went to kids clubs…) I find it really grating and very isolating for friendships. Does anyone else find that? Like I’d rather not associate with these (lifelong) friends than hear all that.

@Ahna65 we have not had the headbanging either, if it hurts your legs surely it must hurt her head? Does school have any OT advice?

@dimples76 good to hear your update… is DS on his adhd meds still I can’t recall? Assuming he’s taking them have you found no improvements?

Have any of you considered other things with your DC? A friend mentioned for eg homeopathy recently and I’ve been looking at some asd sites where people say it’s transformed their children. I think people get all offended because they say asd doesn’t need curing and I get that, but if anything out of the box could help DS with language, not throwing himself headlong into a buffet etc etc I’m all for it…

Hope everyone else is well

@Carrie, I know what you mean re friends holidays. One of my friends who has children the same age as my two was congratulating herself on Facebook that all the money she had spent on her kids swimming lessons was well spent as now she could just laze on a sunlounger whilst they played in the pool. I am sure that I will have spent way more on swimming lessons given that DS has 1:1 but I am a million miles from being able to do that. In general this SEN parenting can be very isolating. I am v lucky to have my Mum and sisters.

DS is not on ADHD meds. We have tried 2, the first (lisdexamfetamine) made him more challenging and the second (Strattera) he refused to take. Has struggled with swallowing tablets/capsules so feel your pain there @Ahna65 and he found the taste of the liquid form disgusting. Agreed with the psychiatrist to back off for a bit and try again in a year or two.

DS came in the kitchen yesterday as I was taking my anti-depressant and asked what the medicine was for. I explained to DS that it was for anxiety. Today I was getting wound up as neither child had put their shoes on. DS then asked me if I had had my tablet today!

Hi all! Had a lovely summer thanks. Took DS bowling for the first time, some swimming, couple of London trips, Great holiday (but we always do 'doing things' type trips rather than resorts as DS and DHh would get bored!) I used to get bored too but now I think a few days by the pool might be quite nice haha. I went back to work earlier in the week and that has been hard. DH was with DS, then DS goes back tomorrow to a new teacher. Eek. I think, with sen kids, there is a real childcare issue that is forcing women especially out of professional roles. That's why I moved to a term time job but now, although I do most days love it, I do feel a bit stuck as nothing else would fit as well. My parents are too old now really for the early starts and all day care, and they have their own health issues as does my FIL. So where does that leave us when there are no suitable clubs etc?! Tricky.
Hope everyone is OK and that back to school goes OK.

And yes @carrie, I don't really hang out with NT parents much any more as the gulf widens and it's just that we have less in common in terms of life experiences, parenting styles, expectations etc. One thing I don't miss is how much most people seem to criticise their children even when they're standing right there!! Crazy!

The childcare issue is tough. I have been lucky to secure DS a place with a local charity. He goes every other Saturday morning for 3 hours termtime and then they have some sessions during the hols too. However, the holiday sessions were mostly 9:30-12:30 a couple of days a week which when you factor in time for pick up and drop off barely gives me much time to work.

I am lucky in the way that my job is generally flexible over the Summer. I have ended up working odd times, eg the other night I struggled to sleep so worked 4-7 whilst DC were asleep. I have also taken unpaid parental leave to get us through the hols.

Back to work today and DS's first day back. We had a brilliant day together yesterday whilst DD was at school. We climbed the cathedral tower, went to an open day at a workshop which repairs/makes organs and had a pub lunch.

The new taxi driver and escort called in to introduce themselves and seemed great. Unfortunately I have the same logistical probs as last year as DS is still going to be first drop off and last pick up. The timing of which clashes with DD's school run. My Mum is helping today but I am going to have to come up with a plan ...Mum is very supportive but like your parents is not getting any younger, she had a hip replacement last year and is waiting on a date for the other hip and then a knee .