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

Ahna you can buy pop up black-out sensory tents. Dd might like that?

I keep reading but not posting, will endeavour to do so properly later today.

@openupmyeagereyes We have a black one, not totally black out but black - but in the past she didn't show much interest just wanted to topple it over. I had forgotten about it though so thanks - will give it another go!! Does anyone else feel like they keep just hopefully buying bean bags, tunnels, spinning chairs... and nothing actually interests DC??

Yes@Ahna65 i can totally relate to that although I think you have to just still have things available and you never know, the dc do change. My cousin bought DS a remote control robot last year for Xmas, I’d forgotten about it tbh it was stuffed in a bag in our utility room. Only a couple of days ago I was tidying and he seemed really interested and has been playing with it since after showing abs zero interest for the last 12 months. Re your DD does she like bubbles? Blowing and then those things that blow foam which can then be blown into a plate for her to put her hands in? Can she blow bubbles if you hold the wand in front of her? Can you then turn that into a game of her ‘communicating’ with you even if it’s just eye context to blow more or make a big pile of bubbles for her to then play with? That was always a winner for DS. The other thing he is obsessed with is springs, you know the ones that can move down stairs except that DS just loves boinging them up and down in a yo-yo fashion. Soft toys? Can be safely mouthed or DS likes ones that can be waved around so he has a long snake which he likes waving around in a lassoo type manner. I have tried and tried with Lego and cars etc but no interest. Re the iPad have you tried those interactive type games so for eg I have seen one where you just touch the black screen and a firework then appears and explodes. All basic cause and effect stuff. If she’s into noises there is a SALT one where there are different things and they move or expand the louder you shout at the machine. I’ve not looked at that for years but I think it was a balloon getting bigger the more noise the child made. To encourage vocalising resulting in something positive I think was the name of the game.

just thoughts thinking about my DS both then and now…

@Ahna65 (and others too but just reading her post re behaviours etc), do you never think to try stuff out of the box, you know, things like homeopathy and other remedies? Magnesium for calmness all that jazz? Now don’t get me wrong my view has always been that it’s a load of rubbish, I’m conventional meds all the way, but in a world where conventional meds aren’t available or work, it surprises me sometimes that so few people haven’t looked at other stuff (via of course reputable people in those fields.) Or maybe they do but don’t post about it. It’s in my mind atm as was reading something on homeopathy and how it can help the other day. Things like impulsivity, attention etc. I’m talking help not cure by the way. It’s a plan B but in the absence of any readily available plan A I often think I’m not proactive enough. If it doesn’t work then so be it but provided I’ve not worsened the situation what is to be lost?

Ahna I’ve bought loads of stuff that has had no interest - weighted blanket, wobble cushion, spinny things… He likes his indoor trampoline and a yoga ball the best.

carrie ds takes a multivitamin, omega 3 & iron. I think he gets a decent amount of magnesium because he eats a lot of peanut butter. We have a spray too which I have used sporadically.

With my ds the biggest changes have come with time I think.

Oh and I give him a probiotic sachet daily too, mixed in his cereal.

@carriebradshawwithlessshoes I like the idea of the firework ipad game - her tablet is not an ipad as such and it's programmed only with the speech software but I think maybe trying that game on another device could help her to 'get' the concept of a touch screen etc.. Slinky (I think that's what you mean re the stairs?) she has shown some interest in but only really to spin it. Bubbles on and off. Honestly I can't emphasize enough that everything comes back to spinning - she will learn to spin virtually any toy / object - it's kinda fascinating seeing her work out centre of gravity etc and for some things like pieces that fit together, it can be somehwat interactive but it's really a lot. We don't think it's only to regulate, although sometimes it is, but just that she enjoys it a lot! That and small spaces - under the sofa, behind the sofa, under a pile of cushions, etc etc..

We've tried magnesium spray before on her legs but not a vitamin. I try to give her a multi but means cutting finely to disguise in food as she wouldnt chew a tablet or a gummy. I'm thinking I should maybe add more than just a multi though, I like @openupmyeagereyes 's ideas. DD is at this point probably 95% peanut butter - didn't realise it was high in magnesium though so that's good to know! The daycare keep telling me she is showing interest in someone's nutella sandwich and maybe to switch - def not going to do that given her diet is already so poor, peanut butter feels quite OK (it's the only peanuts no sugar etc type)

Study day at her daycare today so she's home - 12noon and still going strong after the 2am start !! Absolutely no sign of being even a touch sleepy.

That’s interesting that she won’t eat a gummy… does she not like chewy sweets, haribo type things, I always think gummies are great because they are so similar to them 🤣. DS loves chewy stuff, sweets like haribos more than chocolate etc. ha ha yes, I mean I slinky, that’s the word!! Have you googled spinny toys, are there any out there? Does she then watch it, is it a visual stim do you think?

@carriebradshawwithlessshoes yeah there's a ton of spinny toys and I think we own most of them, some of them several times over ha. I think it's partly visual yeah, but she will use her hand too so maybe she likes the feeling. She does it pretty hard! E.g. she'll have to be spinning something at breakfast and I have to spoonfeed her weetabix because she won't use a spoon, and if I accidentally catch her hand mid spin it will catapult everything for metres. This happens several times a week with food ha... And is even more difficult when having to do it with all the lights off. Honestly... we have to laugh sometimes

No she doesn't like sweets, which isn't the end of the world obviously, but difficult for vitamins.

Hi all! I'm reading along too but not posted properly in ages. All is well here except we have all been ill. Currently struggling into work but almost the weekend!
Our most successful purchases for DS have been weighted blankets, trampoline, and these cogs that stick together. He builds robots out of them and then acts out battle bots! He loves board games too but still prefers playing with someone to independent play. But I also agree that time changes things a lot.
School are annoying me a bit. Yesterday DS got told off for singing too loudly. They told him no don't do that very firmly and, guess what? Yup, he got upset and dyregulated and started chucking stuff. Like, how many times do I have to say about PDA and being sensitive and just distracting him without being too strict??? Argh. Aside from that, swimming is going really well so...I just get a bit annoyed because I help on the pta and now volunteering with some other stuff there and they just don't seem to listen to the PDA stuff (or as I suspect, it gets talked about at inset then forgotten in thr middle of a situation) and their handling actually escalates the whole thing.i miss his old class!! But then again, they can't stay in little school forever I guess.

I sometimes think that my living room could be repurposed for use by an OT. We have exercise balls, peanut ball, trampoline, rockers, twisty platforms. They all get used but my main failure is finding something DS will chew instead of his clothes and fingers. An expensive purchase was a Z vibe which DS loved in clinic but dismantled at home - I got worried re the batteries and locked it away

Lydia that sounds like like a very frustrating experience with school

@LydiaWickhamsBonnet what are the cogs can you send a link??? Thinking for Xmas for DS….

I agree with your frustrations around school. Can you talk to them (again??)

@carriebradshawwithlessshoes this is them: VIAHART Brain Flakes - Educational, Creative Building Toy, Tested for Children's Safety, 500 Interlocking Plastic Discs, with Storage Jar. A great STEM Toy for Boys and Girls https://amzn.eu/d/4JetmTS

And yes I'll chat to school, then they'll remember for a bit, then another chat etc. Urgh! Roll on the holidays!

Thank you @LydiaWickhamsBonnet

You shouldn’t have to bloody keep talking to them Lydia, it’s ridiculous. They’re all supposed to have student passports or the equivalent. Teachers should have read the EHCP. The fact that you get this crap even in specialist schools is a joke.

Thank you for asking @Ahna65 - there is so much to update I don't really know where to start and of course I am lacking energy/time to do it in.

The appointment went well. The doctor is lovely, I only mentioned ADHD back in February when I first phoned up, but she immediately said she sees signs of autism as well. I am always so glad when people say it because I have had so many people try to be reassuring or insist that what I am seeing is "normal" and it makes me feel like I'm going crazy or making things up because I've been reading too much on the internet or something 😬

So we have testing on 4th, 5th and 11th December and then we can go and get the results, without him, which I appreciate, on the 16th Jan. I am hoping DH will come with me because he has been totally in denial about any mention of autism since anyone first mentioned the word which was just over a year ago. Says he "doesn't see it" but then mentioned it on his work chat (IT) and was surprised/sceptical that more than one of his colleagues replied saying they have a child with an ASD diagnosis. (This amused me because.... IT. So yeah, that fits. But anyway.)

Also we are currently settling into Kindergarten which is totally exhausting because he has just previously not done very well in environments like that, but at the moment the assumption is that he will start mainstream school in September, so I feel like I have to at least try my best to get him to have a positive experience of preschool so that he at least has a shot at school, rather than just throwing him in at the deep end there and watching him sink.

Luckily he has an absolutely brilliant teacher. Weird thing in that there are two groups on this floor and my 3yo is in the other group. 3yo's group I find the teachers pretty poor and inexperienced but DS's group all the teachers are brilliant, on the ball and patient and they get it. Like I was helping him in the toilet today because he is still extremely anxious about going to the toilet even though we've been every day this month. And she noticed he was trying to wee standing up and asked if I could explain to him they usually prefer the children to sit down. I said that I have, but because he is so anxious, I felt it was important to get him comfortable first, and she immediately agreed and understood. Rather than doubling down on what the rule is. So I like this a lot.

Also he needs a filling at the dentist. DH offered to take him and I said yep, please do. Because I doubt I will get very far if it's me. They kept rushing me, and I can do reassurance and persuasion if I have time, but not if you push it. It will be interesting to see how DH gets on.

Wow BertieBotts it sounds like you have a lot going on. I hope that you can get your DH on board more. How did the dentists go? Good luck with the assessment appointments. We had ours this time last year and I remember being a bit stressed at how uncooperative DS was, eg cognitive assessment was abandoned after what seemed like 5 mins. However, it was all used as evidence in the diagnoses.

Lydia hope that school listens to you better this time.

Started ADHD meds on Saturday they are meant to take effect within an hour or 2. So far the only change I have observed is sleep disruption. Obviously, very early days. We saw the LD nurse yesterday and she says that she will call me once a week ....we shall see!

Dentist appt isn't until the week before Christmas. They wanted to do an X-ray at the check up, but basically didn't show me what they wanted to do so I could explain to him. And then they were doing it too fast and giving up really fast which I found frustrating.

We have a barrage of tests next week and a friend has been to the same practice with her DD recently and she said they didn't let her come in the room! I am not sure DS will actually go into a room with a complete stranger without me, so let's see. Selfishly I want to go in because I'm nosey and I want to see what they will do!

He had his first 2 hour session at Kindergarten today and by the end of it he was so done that he had gone into a state of not really talking sense or responding normally to what we were saying. I am meant to be leaving him for 3 hours tomorrow, so I will be interested to see how that goes. He was also busting for the loo today because he doesn't like going to the toilet there, because they have told him he needs to sit down and he wants to stand up (but also because in general toilets are scary). I will talk to them about it in the morning. (I am skipping off with glee because I finally get to go to my coffee morning for the first time in nearly 3 months!)

Interestingly DH seems quite fixated on the empathy thing - DS2 doesn't show neurotypical social code empathy responses, whereas DS3 who is only 3 does, and pretty strongly and you can see his little face really worried and concerned about the person. I don't agree that DS2 doesn't show empathy at all, because he does, he just doesn't produce those responses in that exact context, because other people being upset tends to unsettle him hugely.

With sensory toys has anyone screwed stuff into their ceiling? I really want to do this but DH is a bit anxious about it, but we have these open plan stairs and he's forever hanging off the bottom of them like monkey bars. I just feel like it would be better to have something he can legitimately climb if he wants to. A spinny hanging chair thing would be great too and we can get those really cheaply but the frames they hang in are expensive whereas the ceiling hooks are cheap too.

I have visions of having a few different loops screwed into the ceiling and then taking things on and off them with caribiners depending on whether we want more space or more swinging stuff.

Argh argh argh. Moany message from teacher today and only getting one side.of story. When DS told me his side, I could see the exact trigger and.reason it happened. They still don't seem to realise that he forgets to vocalise things etc. Several shirty dojo messages later, teacher calls me to apologise and says all the right things but not following through. Just fed up with it all. Poor DS getting himself into a state because no one in his new class know him properly enough yet. Teacher said oh its difficult because it becomes a.battle, like, be an adult then and give him back his autonomy. You'll never win a power battle with a PDAer!!
Work tough too. Feel like sacking it all off,home edding and opening abook shop on Orkney. If only we had the money!!

@Lydiawickhamsbonnet how frustrating re school and sorry that work is crap too.

@BertieBotts hope that the tests go smoothly.

@BertieBotts how did the tests go?
Re things from the ceiling, yes, I've thought about it before for hammock type swing but I would be too nervous about structural issues etc I think (that and the significant risk that whatever it is wouldnt not actually get used ha)

@LydiaWickhamsBonnet that is frustrating. In general I think getting moany type messages is always really frustrating, as if it's our fault. They must have handled it pretty badly if they got to the point of having to apologise though!?

We've been having a rough time of it with sleep and just difficult behaviours all round. Think I mentioned we were able to test respite overnight a couple of weeks ago with the idea that if it went OK it would be once a month. We got some updates during her stay and it sounded like it went OK ish (they were surprised by how much she climbs etc, and her sleep was bad but then it always is), but they then said they would follow up after evaluating to see if she was a fit for that particular group. Anyway we got a pretty short email yesterday just saying that the respite wouldnt be an option going forward as DD's sleep problems are too extreme. Very odd to me as (1) they could have then told us instantly after the stay, surely; (2) they were aware that sleep is the primary reason we wanted respite, we'd been transparent about how early she wakes and that she doesnt go back down; and (3) they do have different staff at night so I was kinda under the impression that they'd expect to be awake, but I think that's not the case.

They've recommended we get in touch with various sleep help services that we already explored more than a year ago, so not helpful. Quite deflating as after feeling initially nervous about respite I'd got my head around it and felt like it was going to be a great shift for all of us. Disappointing!

Rubbish weather here. Think the Christmas tree will go up today but I have a feeling that DD will trash it immediately which makes me sad. Wondering if it's better just not to bother. Everything is non breakable but I think she will pull it over...

Hi all. We’ve all been ill here, I hope you are all doing better!

Bertie how were assessments?

Ahna I’m frustrated on your behalf re. respite. If her sleep was ok you wouldn’t need the respite…

Lydia I hope things are going better at school and work.

dimples how is medication going?

carrie Hope all’s well.

Ds has had a pretty good half term, he’s doing better in class and went to a couple of birthday parties but I know he finds it all really hard, bless him.

We had to miss some Christmas things we had planned due to illness, thankfully still time to do some fun stuff. I am
not ready for Christmas, I didn’t realise I had so little wrapping paper so I have a load of stuff in my Amazon basket.