Primary School Auties 11: 2023 is here

[openupmyeagereyes]

Thread 11.

This is a thread for the parents & carers of children with additional needs. Most of us have autistic/ADHD children in primary school, but anybody is welcome to join us to chat x

Links to previous threads below.

Thread 1
www.mumsnet.com/Talk/special_needs/3080753-DS-with-ASD-starting-school-Sept-2018-I-am-feeling-overwhelmed
Thread 2
www.mumsnet.com/Talk/special_needs/3451020-Reception-auties-2018-19-thread-2
Thread 3
www.mumsnet.com/Talk/special_needs/3628263-Auties-transition-to-Year-1-thread-3
Thread 4
www.mumsnet.com/Talk/special_needs/3748449-Primary-school-Auties-into-2020-thread-4
Thread 5
www.mumsnet.com/Talk/special_needs/3953023-Primary-school-auties-summer-and-beyond-thread-5?pg=1
Thread 6
www.mumsnet.com/Talk/special_needs/4166833-Primary-school-auties-spring-2021-and-beyond-thread-6?pg=1
Thread 7
www.mumsnet.com/Talk/special_needs/4303826-Primary-school-auties-summer-and-the-new-academic-year-thread-7
Thread 8
www.mumsnet.com/Talk/special_needs/4422100-Primary-school-auties-step-into-Christmas-and-the-New-Year-thread-8
Thread 9
www.mumsnet.com/talk/special_needs/4502988-Primary-school-auties-thread-9-spring-summer-2022
Thread 10
www.mumsnet.com/talk/special_needs/4592899-primary-school-auties-10-summer-and-beyond-2022?page=1

dimples we are going swimming too. Enjoy.

I didn’t realise that quite a lot of you on here were also still waiting for diagnoses. We started the process now with a couple of observation meetings. Not sure how long it will take. Definitely agree any IQ test would just not work for DD.

still on the hunt for a nanny of some sort. Very hard to find. Met one girl via a website, she is autistic which I thought could be good, also for DD to have someone in her life who is. She was very pleasant but she lives in supported accommodation as said she wouldn’t be able to live independently - this gives me a bit of a worry as to looking after DD independently. But find it hard to give that feedback. She also lives a bit too far really - a long bus ride away and ideally (although beggars can’t be choosers I know) we’d have someone more in the neighbourhood for ad hoc care too. Have put an ad on the notice board of the college for students doing developmental psychology, thought maybe there’s a fit for someone there. In the meantime just stretching the flexibility of work a bit

DS (year 2)'s class is closed (one of only a small number in a 3 form entry school, bit annoying but hey ho!) and he's gone to a sports camp for the day. He cried at the thought yesterday but when DH dropped him off he saw a few boys from his class and seemed really happy so that's good, hopefully he'll enjoy it.

Open yes he is definitely behind academically, he's not working at national curriculum level. He can read and write but very much behind NT children his age. He's very quick and bright though, I think the main challenge is getting the information out of him due to how behind his speech and communication is. He's also very good only showing his capabilities to certain people in certain situations.
Sorry you've been full of colds too. It's rubbish being sick!

Dimples it was part of a private assessment. We went private before the NHS appointment came through. I'm glad you and ds are having a nice day, enjoy the swimming!

Hope you manage to find someone Ahna.

Hope ds has a good day pondering.

Carrie yes CAMHS said significant learning disability, that was the psychiatrist, approx 18 months ago, he had asked if he had any other diagnosis I said yes, autism, learning disability (diagnosed prior to this by his autism consultant, it did used to be global development delay when younger, then after a certain age I noticed the wording had changed to learning disability)

so I think based on ds behaviour at the appointment, and for no other reason because I had only said ‘learning disability’ not what sort of level, (he was spitting down the wall, turning the lights on and off when the dr was trying to take notes, ds was pissing the dr off doing this 🤣 and he was drawing all over the wall with a felt tip, and because he was doing all that he wasn’t talking or answering the dr when he spoke to him, completely on his own agenda which he usually is anyway, so probably seemed more delayed than he is if that makes sense) I think probably why he wrote significant and then it’s been on all his paperwork since,

but then maybe significant in their words means moderate, because I think they use profound for severe, no idea I’m just interpreting their terminology here.

They all describe things in different terms anyway.

Ds is in school today, bizarrely his school opened as usual. Which really did suprise me.

I mean ds doesn’t understand why teddies don’t eat off his spoon when he tries to feed them, bless him.

I can never imagine him living independently when I think of things like that. It’s so complicated.

We had fun swimming this morning though the water was bloody cold and ds was shivering. I’m surprised he stayed in as long as he did.

Ds is similar in that he is behind academically but in other ways is very bright and his reading is pretty good now. It doesn’t really matter, I was only thinking about it as it had been raised. I suppose it’s more helpful to challenge my apparent ignorance of what learning disability means and what those individuals can still achieve.

When ds got his diagnosis the paed said it was too soon to know how high functioning he would be - her words.

To me, a learning difficulty is anything that is a barrier to learning and typical development, so my DS still can't do age appropriate things like do up buttons or go on playdates without me, or a club like you were talking about @Ponderingthemeaningoflife , because his asd means he needs much more support to navigate through the world and do social things. He is very clever, but on his own terms, and this is why i hate terns like high or low functioning because he would be classed as high but only with a massive amount of support (121 etc), otherwise he would look more low (mouthing etc). But he understands things like teddies not eating (actually gets quite cross if tv shows or tas try to pretend that they are! ), but could not understand an unexpected change. Hmm, interesting isn't it.

We had a great time swimming and then went to a garden centre with a mini zoo, cafe and play areas. At the garden centre I did notice other children looking at him and observing that he was different - I haven't noticed that so much in the past when he was in a calm mood, maybe it's more noticeable to them now he's bigger. I think one of the things that keeps replaying in my mind from yesterday was the senior therapist saying that I can't let him go to mainstream secondary (which I have no intention of doing) because he would be targeted by bullies.

With DS it is v apparent how much longer it takes him to learn things - after swimming today DD (3) just popped her own socks and shoes on whereas I had to do DS's (9) for him. But DS is endlessly curious about the world - always asking questions and wondering about things and sometimes he has amazing insights.

Open I am a bit indulgent with the swimming and went to privately owned one rather than the Council one which is lovely and warm and the changing rooms have underfloor heating.

Dimples, when you say other children were looking because he looked different at the garden centre in what way do you think he does? What is he doing? DS I feel still is under the radar but may be a matter of time…

dimples I think it’s the non-verbal communication that they pick up on first, even before any gestures or stims. It’s sad but I have seen it too.

Your pool and garden centre sound amazing. Sadly I don’t think we have anything like that here.

I just noticed a few of the kids staring at him. Maybe it's because he's so beautiful! But I think it's because they realised that he is different. Sometimes, it's quite obvious he is different due to the noises he makes or because he is chewing his cuddly toy pelican or if he is having a meltdown but today I was surprised by the somewhat negative attention. We also saw a child from school who I heard saying to their sibling that they didn't want to play with DS because he is "weird".

carrie how was your eeg appointment?

Aw Dimples that’s not nice of the other child. We have talked about our kids off thread and as I’ve said he reminds me so much of my friends DS (Asd, same age, also adopted). He’s a fab little boy, always greets me with a huge hug. My friend is looking at a secondary with an asd unit, may this be an option? It’s funny isn’t it… one of our Partners has an adult DD with LD and he says she’s delightful, for all her challenges she makes up for it in other ways, so he said out of everyone, she would be the most interested to talk to me about my family etc, genuinely so. That’s her great strength, perhaps like your Ds’s inquisitiveness and other things.

Oh god Open…. Awful!!!!!!!!!! Well he had 4 hours sleep and 3 times his usual melatonin plus another drug to get him to sleep. I took him on a mega walk this morning. Just wouldn’t go to sleep, pulling the wires off and so on. Trying to get off the bed. At one point I had an electrode stuck to my own head and the nurse was fussing about glue in my hair I was struggling so much!! You couldn’t write the script! They got a recording with him awake but it wasn’t the one they wanted/ needed.

Oh dear carrie. So what’s next?

Oh Carrie that sounds stressful. DS hated the EEG and he wasn't sleep deprived. It sounds like quite an ask to go to sleep in those circumstances. Has he started weaning off the epilepsy meds yet?

They will report back on it as an awake eeg and then the consultant will take a view if she needs us to try again! Honestly….. Dh saying it’s a big ask for a young child who often won’t sleep in his own house at 10 pm let alone a hosp at 1.30! Of course he was then falling asleep in the car on the way home frustratingly…

yes dimples! He started on 400 mg, he’s now on 200 mg. So half starting dose. They come in 100 mg sachets so one more reduction then a final one to zero.

Oh @carriebradshawwithlessshoes what a nightmare! My DS wouldn't fall asleep rather, he'd get overtired and hyper!! He's only just gone off a few mins ago, worrying about the next general election and asking me what democracy is, who controls the police etc! His poor head is so full of random stuff!
@dimples76 my DS gets looks too, mostly because he talks quite loudly often narrating stuff around him and he spins snd arm gloss when he's happy. Some kids are v smirks and sometimes the parents too, ignorant people. Makes me realise how loving and accepting of difference DS is compared to them.

Arm flaps, even!

carrie I hope you had a decent night after your eeg fiasco. I think your dh is right.

Uno I hope ds wasn’t so anxious last night.

Ds slept until nearly 5 this morning after a few 3:30 starts so that was a relief, though I didn’t sleep particularly well. I’ve booked his medication review but it’s not until after the half term break. He used his knife again last night (I forgot the night before and cut it up before I served him) and is doing really well with it. He has been much more settled this week. Still a few outbursts but nothing like the frequency or intensity of last weekend.

I have an eye test in town tomorrow morning and am looking forward to being able to pop into some shops afterwards.

Enjoy a bit of retail therapy Open. Re eyes, I’ve just found that whilst I’ve always been very shortsighted (minus 7.5) and wear contacts I now can’t read a book, so have had to invest in ready reader glasses for over contacts! Tried varifocal lenses but my prescription is too strong. Funnily a work colleague told me the exact same story yesterday. Perhaps my age.

feeling a bit fed up with DS and wondering if to give adhd meds another go. School on Monday said he was lovely and calm but since all I hear is he is ‘very excitable and bouncy.’ The bus moaned he’s ‘full of energy/ very feisty’ (I know what that means.) I find it bizarre this isn’t something that can easily be corrected by something. Granted, he may or may not be the worlds biggest genius cognitively (a totally different point) but surely any child should be able in a classroom/ on a bus to physically be able to sit down ffs?? I just don’t understand it. When I got in yesterday he was literally tearing through the house. That’s all he wanted to do until bedtime. DH has a weighted vest (for exercise) and I actually want to strap it to DS just to slow him down.

the school is a good one and I do think if there were any strategies to change this beyond meds they would have cracked it by now. It’s exhausting. He’s a tiny 7. We couldn’t be dealing with this when he’s a hefty 12 year old (unless of course things change.)

carrie I have varifocal lenses with a mild overlay for reading now. It’s definitely an age thing, I noticed the change in the last couple of years. I can read fine without my lenses but when they’re in I struggle if the writing is really tiny and now have to employ ds’ magnifying glass which I keep in the kitchen drawer

I don’t think there’s a strategy in the world that could prevent that type of hyperactivity. His body/brain must be telling him he needs to move. It’s not wilful.

Does he like deep pressure, weighted blankets or anything? Do vestibular exercises help? (If that’s the right sense!)

I think @openupmyeagereyes is right, my DS just has to move. Trying to stop him just makes him disregulated. It must be tiring for him,but it's who he is. He can't sit still for long unless he's hyperfocused on something but school still don't think adhd. He is a big tall hefty guy for his age and likes to.lean on people. I just bring him in for a cuddle if he leads on me as he's too heavy for leaning now. He does it more when he's stressed too and the more people say no DS (mostly my annoying SIL who still refuses to listen to me about how to talk to DS), the more he does it of course!
@carriebradshawwithlessshoes will he chill out with a game on kindle or switch? My DS won't really watch TV unless it's a fave programme but he will regulate through a game. And honestly, it means I can take a few mins to rest and read a book or do dinner, so it benefits everyone (unless he wants me to play the kindle game while he watches!!)
Enjoy the shops @openupmyeagereyes !
Almost the weekend everyone!