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

Hello @Ahna65 and everyone else! Yes, I sometimes read this thread and struggle to relate, especially to the ‘aren’t they growing up’ as DS is def not growing up! It’s his birthday on Sat and he is pretty much as he has been for the last 4 years. I mean maybe he isn’t to some people but on the big issues he is. I find pics of him years ago and he still even looks the same as DD pointed out the other day. I’m not complaining about that though as it does mean he gets a lot of allowance from people as he could easily pass for a child several years younger.

And yes Ahna I will always be looking for a solution. If I had a ND child with a different profile I may well not be saying that because of course we need to embrace diversity but DSs life and ours would be so much better if he could ‘come on’ to use my mums words in certain areas.

things not bad here, settled a bit since my other thread. Funnily we were experimenting with some new vitamins which as with everything seems to send him to orbit. Back to that ‘looking for a solution…’

i hope everyone is well and enjoying the weather. Ahna I’m impressed DH can cope without you… DH would moan to death about me being away a night even! We have discussed me taking DD somewhere and he’s not happy. Says DS is too ‘hard work!’ . And he sleeps (with meds) normally and doesn’t generally have meltdowns etc!

Ahna sleep largely the same. I think ds might be going through a growth or development spurt or something, he’s a little bit out of sorts generally. School is still very frustrating unfortunately, I really need to work on not being triggered by it so much.

Ds is very chatty but it’s often not the same as talking to a NT child. He likes to talk about his interests a lot etc. and to dominate the conversation.

carrie if your ds hasn’t grown or developed much in the last several years, has he seen an endocrinologist? I presume he has.

@carriebradshawwithlessshoes yes tbh I'm nervous about how DH will find it, but midweek is easier in a way (and he's had a long weekend away just now for a wedding, so I guess a bit turn taking!). But yes, longer than done before and maybe the conclusion will just be that it's not doable. Sounds like a nice idea to do a one on one trip with DD too though. I'd like to do a night with DD2, also DD1 I guess just harder to plan something that would really work well / appeal.

It's nearly DD's bday too. I find birthdays a bit hard as of course they are so filled with expectations. And like you I look back to the previous year and don't see real 'progress' (although I probably miss the small things, because other things have got worse / made it all harder). DD has no interest at all in gifts (does your DS?) and beyond more things which spin, it's hard to know what would appeal to her at the moment. I guess it doesn't matter though, but we will likely still mark it somehow, if more for DD2's benefit!

@openupmyeagereyes its so hot here im out of sorts! DD passed out at school the other day, do you think that is contributing maybe?

DS did see an endocrinologist a while ago and this private neurologist recently. She said he’s tiny but strong and didn’t comment beyond that. He’s v wiry but never still. Also (and I know I shouldn’t moan) he likes foods that are too healthy.. he is obsessed with green veg and salads. When I try and tempt him with cake and biscuits he won’t eat them! He needs to put some weight on def but I’m not really sure how to get there, I’m watching him now in the garden, I offered him a biscuit after school but he wanted an apple…

@Ahna65 i hate birthdays and Christmas too for the gifts! It’s a nightmare as DS has no interest in toys. Or computers/ games etc. we tend to get outdoor stuff, bikes, scooters etc. this year we have got this climbing dome thing. DH said do you think he will break his neck on it? The answer is prob yes but he will have fun trying. It’s DDs birthday too so total chaos here! We are having a family BBQ if the weather holds.

carrie it started before the heat.

Happy birthday to Ahna and carrie’s dc 🎉

This will give you a laugh. I asked DD what she wanted. She scooted off and produced her (as if should be) knee length school skirt and said ‘I want this shortening by 2 inches. That’s it. I don’t want anything else if I can have that.’

ffs… 🤣. Yeah, let me think about that one…

carrie she’ll just have to roll it up!

@openupmyeagereyes she does and it looks ridiculous because it’s about 6 inches longer at the front than back or vice versa! 🤣

Happy Birthday to your DC Ahna and Carrie. DS's bday went v well and he loved his presents. He is fairly easy to buy for although I sometimes has rather unrealistic expectations. He wanted a projector screen that retracted into the ceiling (this was not to watch anything on the screen purely for the pleasure of seeing the screen up and down).

Open sorry to hear that the school situation has not improved. I'm not surprised that it gets you down.

It was DD's sports day today and she came last in pretty much everything. I am used to that with DS but it made me feel a bit more concerned about DD. It took her quite a while to realise that the egg and spoon race had started and her classmates were nearly 1/2 way to the finish!

Meltdown from DS after school as he wanted to go swimming. Btw we never go swimming after school and all pools nearby only have lessons then. Any way I promised the paddling pool instead but when I went to get it out of the garage discovered something has been eating it. At this point I was v hot and bothered and just wanted to lie down. Fortunately, however a water fight restored peace ..sort of.

Feeling a bit apprehensive re school visit tomorrow. Really hoping that DS likes it.

dimples I really hope everything goes well tomorrow.

@dimples76 yes good luck for tomorrow I hope it goes well. Love DSs ideal birthday present!! 🤣. What did you buy him that he loved?? I’m curious and need ideas (fast)!

what concerns you about DD? My DD always finished last at sports days and things like that. She hated them. She was when younger v uncoordinated and still struggles with a bike. When she started school she was constantly falling over which worried me no end. She has sort of now found her way with sports, hates running, cycling etc (still) but is v good at tennis.

Carrie thanks. DD is very emotional, she is in interventions for reading, writing and maths at school. I think that a lot of it is to do with having a July bday and having DS as her big brother (because he frequently attacks her with 0 provocation). So, it's more a watch and wait with her at the moment. She is v different to DS, super affectionate, caring and very determined. I just feel with her birth parents it is not wholly clear why they acted the way they did whereas DS's BP are both diagnosed with LD and his BM with ADHD.

DS's presents: cuddly toy, pens, a guitar, a sonic screwdriver, screwball game, bath toys (which you click together and stick on the tiled wall and a potions set. I really wanted to get him something to satisfy his projector screen/roller blind obsession. Last year I bought a cheap roller blind, put it on his bedroom wall and said have at it (he is banned from touching other blinds as he has destroyed all the ones in our house). However, it was wrecked within an hour. This year I ordered a roller banner stand with a photo of DS, DD and me on...but I made a mistake and ordered one which is 2m high! It also has a quite sudden movement when it rolls down. But DS loves it.

We are all too hot!!! All flaking out a bit in this heat!
DS is very verbal, but had a language delay, and some of his speech sounds are not quite right. He hates salt intervention though. He will sometimes have a conversation but often will dominate it and often ignores questions he doesn't want to answer. Sometimes if he's really focused on something he just misses the question and we've had his hearing checked which was fine, so it's more about processing I think.
He tends to talk over people etc. I find the same struggles with the social side of conversations myself, especially as I get older and notice / embrace my own neurodiversity.
Sorry sleep is up and down @openupmyeagereyes , the weather isn't helping I'm sure.
@Ahna65 I think having the respite as an option is really important as you assess the impact of lack of sleep on the rest of the family. Glad you're getting to know the respite people more.
@carriebradshawwithlessshoes hello!
@dimples aww what lovely pressies that mean something to DS.
DS has already done his birthday list and I'm having to explain about budgets...difficult as he thinks everyone must have hundreds if thousands of pounds in savings...ummmm nope!!
I have been out to a dinner party with some old friends tonight, hooray! Was lovely, much needed!

@dimples76 that’s hilarious, do you like yourself at 2m high?! 🤣🙄. Some great present ideas in there thank you I will take a look. Shopping tomorrow. I’m in the office and there’s a big toy shop next to work so I may as well take the opportunity….

re DDs BP it is really hard to know isn’t it. I don’t think anyone really knows what goes on in other peoples lives or minds. Sometimes people act completely irrationally it seems, sometimes there’s a logic to it (often that’s subjective to them.) it’s impossible to know.

Let us know how tomorrow goes!!

@openupmyeagereyes I know it’s easier said than done but try not to feel too down. All of our DC have blips or unusual phases, read my other thread as case in point! Even DD, she goes through ups and downs, but we analyse our ND kids so much more don’t we. It’s also getting near end of term, they are all winding down. I remember last July DS was so off kilter I called it a day and didn’t even bother sending him to school for the last few days! Nearly end of term….

hello back @ElizabethBennetsBoots ! I think we crossed there.

ElizabethBennett'sBoots hope that you can manage expectations!

Carrie that was the horrifying thing - to see the giant photo of myself! I have a great photo of DS staring at in wonder (or perhaps horror?) Good luck on your shopping mission.

I still have a Christmas present that I got the DS partially assembled. It's a toy roller shutter door but was in 100s of parts with instructions in Mandarin. Maybe I should tackle it again - fortunately DS doesn't know about it.

@dimples76 love the gift ideas, you’re so creative! Bath toys always a good one.

aw bless DD at sports day. I’m kinda surprised sports day is still going in that traditional form, it’s horrid for the kids who come last. Hope she didn’t take it to heart.

interesting re salt @ElizabethBennetsBoots . Did it ever help him? With DD I kinda feel like if she will become verbal it will sort of come from her own initiative , weird as that sounds… We are getting an iPad w the speech programmed stuff soon, just to give it a go. Couldn’t do two languages so will just be in Dutch. She’s trying one a bit at daycare but maybe it catches on more if consistent. I’m intrigued but not particularly hopeful.

@Ahna65 i have long since thought that SALT is great for language in kids who already have language, be it mispronounced, disordered, minimal etc but utterly useless for those who have none. I think that now more than ever. I want to personally strangle every SALT who whips out a plastic fucking cow (pardon the language) and bounces it in front of my DS and really expects him to say moooo. It absolutely doesn’t work like that. Yes it did for DD and maybe those merely with a language delay but not for kids like DS. I am an intelligent woman ffs. If that’s all it took he would have been speaking years ago.

what I have found though is that by in day to day life waiting for my DS to vocalise for something before readily handing it over does encourage him to understand that vocals are required to achieve something. That is really hard though when I know damned well what he wants. It’s a tough approach but it does pay dividends. Also sometimes just sitting with him and almost making a convo out of what he is saying. And seeing where it goes. So he will say something that is an approximation of DDs name, I’ll call her Amanda. So he says Ahh and I’ll immediately look at him and say Amanda? She’s at school DS! Do you want to play with Amanda after school? And he will say ‘ye’. I say yes! Oh great. But what now? He may then say ow, I say oh!! Out, shall we go outside? And he goes to the door and we do. I have no idea if I’m directing that convo in a completely different direction but I’m hopefully making him think that I’m listening and taking it in and responding which I think is important to him. It also does encourage that type of verbal interaction. I should do it more than I do really. It takes patience.

Yes makes sense @carriebradshawwithlessshoes . The waiting for them to say something is a lot like some of the Hanen stuff, and I would hope some Salts apply that but tbh it’s never going to be long enough in a given week to make an impact unless happening at home.

the problem is indeed yes if you know what they want (typically with DD the only things that are very clear would be food, going outside or going on the bike), easy for it to progress to a meltdown if you wait. At least that’s my experience with her. At the moment the hand leading has progressed into more horse riding style.. she will put arms up to be lifted and then proceed to nudge as if on a horse in the direction she wants. It’s tiring !!

It sounds like you're both doing everything possible to support speech. DS had SALT sessions when he first started school but I never really understood the point of those as they were not focused on social communication. DS has a pretty good vocabulary and his speech is grammatically correct. But he struggles to have a conversation- he will mostly ask lots of questions but not listen to the answers, talk over people a lot and not answer other people's questions unless it is something of interest to him. He also has quite a range of accents - he tends to say a word in the same accent as he first heard it. I worry that people might think that he is taking the mick - because for example, if someone tells him their name, he will parrot it back in their accent.

School visit went well although a bit of a meltdown afterwards in which DS grabbed my glasses off my face, threw them on the ground and them tried to stamp on them (fortunately I got to them first). It would have been a nightmare as we were 1/2 hour's drive from home but I can't drive without my glasses.

DS loved the head teacher who he interrogated at length about projector screens, fire alarms etc.

He is back for a 2 hour visit next week.

Yes to ignoring questions and talking over other people! Ds is also repetitive and likes to ask questions that he already knows the answer to. He is amazing though and I know we are very lucky that he does talk so well.

dimples that all sounds very positive (apart from the glasses). Did you get to meet some of the children that will be in ds’ class?

Cooler and breezier here today, thank goodness.

No, Open they have not finalised the class lists yet. I had hoped to be able to chat more with other parents but DS was rather full on. He is going for a 2 hours
next week and a 4 hour visit the week after (when he will be with his class tutor and class). It was all new starters today so not just year 7s (although it most were). There was a real character who reminded me a lot of DS - put it this way there were a lot of people there but HT knows the names of 2 of the new ones (my boy and this other lad).
Got loads of stuff to read and forms to fill in when DS is in bed.

Sounds good dimples!!

Do your DC ask ‘inappropriate’ questions? Theres a child on DSs bus who is fab, she really makes me smile. She’s early teens but she asks me literally everything. My favourites are ‘well you have more make up on than usual, why is that?’. I also get ‘are you going somewhere wearing that?’ (Usually my work day.) any visitors are ‘well who are you exactly?’. If I’m not there it’s ’where is Carrie?’. When we had workmen it was ‘what are they doing exactly and why?’. She’s fab.

i would take any questions from DS you are right open.

Yes, totally inappropriate questions from my DS. For example: do you have a baby in your tummy? what's wrong with you? will you ever walk again? (to someone in a wheelchair), why are you not married? are you very, very old? I could go on and on! He also asks quite random questions. One of his faves is 'what sort of stairs do you have?'