Primary school auties thread 9 - spring / summer 2022.

[danni0509]

Thread 9.

Links to previous threads below.

For the parents / carers of children with additional needs, most of us have asd / adhd children in primary school, but anybody is welcome to join us to chat x

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

Danni I find it really sad that all the non verbal kids at ds school are lumped in the non academic group. This is my fear for ds. I was very clear about that assumption when we visited school. Do you think they are or is it just assumed they are because they can’t verbally communicate (non academic I mean.)?

Carrie I don’t think it’s a case of his school just lumping all the non verbal kids together. Sorry if that’s what you took from my post. Maybe I should explain.

They are just the kids who would benefit most from the sensory group, 4 of the 5 happen to be non verbal, but in all honesty (my own personal opinion of seeing the kids in ds group from an app they regularly upload videos onto) they are the ones who I would say are more on the severe end of the autism scale, so makes sense they are non verbal. Ds isn’t severe autism, obviously you all know that, (he is moderate) but he is a MASSIVE sensory seeker and he disrupts the other group too much so he’s been lumped in b. I suspect it’s mainly due to the fact he will set the other group off who are the calmer group from conversations I’ve had with his teacher. That was one of ds teachers main issues before they split the group in to two, ds had a habit of sending all the kids loopy, he goes round in circles trying to poke reactions from them all and his teacher said it has a domino effect and he set the whole class off.

Ds teacher told CAMHS that he is the most able child from the whole class, but he is unable to access the work due to his adhd and challenging behaviours. So I know he should be in a) but things ds can’t help doing is keeping him in b) its frustrating.

I just don’t feel this is the right group for ds for the whole day. They don’t seem to do much ‘work’ where he’s at. Again I can understand the group etc.

I was just happier when he said they will let him do AM in one group, PM in the other group. But then they said ds can’t cope with that after they trialed it, I don’t know what the answer is but they need to find a balance as it’s not the right thing for ds when he is as verbal as he is. He needs that interaction with other kids too. It’s fine he is with the kids he has to use makaton to communicate with, but also he needs to learn how to have conversations / interactions with kids who can talk like him, I just want ds to have a mix. etc Sorry I’m trying to tread carefully how I’m coming across!!! as I know your ds is non verbal, and I mean no disrespect at all. Just trying to put what I mean into words without sounding offensive, even though I’m not trying to be offensive, .. all I mean is I just want ds to have both opportunities.

In the sensory group, all the work has a sensory aspect. (Ds on Friday had a tray of flour and small letters scattered in and he had to make words / sentences from the letters) they do things like letters velcroed to the wall and they are higher in height so the children have to jump up to reach the letters etc etc. They use lots of slime and goo and then roll around in feathers. You should see the state of his uniform 5 days a week 🤣 he came home Friday and he had a lunch box full of plaster of Paris or whatever it’s called. I opened his lunch box and all this dust just filled the kitchen. I asked him and he told me to shut up so I still have no idea what happened! I don’t know who put it in there or why.

They visit the sensory gym more. More outside work, lots of physical games etc etc.

I don’t know what they do in the other group, I’m assuming more work based. It’s called the academic group so I imagine so. Ds currently in his group has a lot of time playing what time is it mr wolf and playing the floor is lava. I get that’s good for social skills and turn taking etc but I’m not seeing many more benefits.

Thats what I’m wanting to discuss with his teacher what can they do going forwards as I’ve always said, I feel like ds is being a bit let down x

Thanks for your messages, my antibiotics seem to be working now x

Open I am looking forward to Stranger Things too

Danni glad to hear that the antibiotics seem to be working.

My understanding poor as it is you see would be that most kids would benefit from that type of physical stuff for say half an hour then they are taken to do academic stuff. Hopefully then their sensory need is met as they have had half an hour of this and they then can focus on an academic activity. So I am surprised that it’s one group doing this all the time and one group doing no sensory stuff. But what do I know?

danni just out of interest how do these more severe children present when you say you think they are severe asd? I’m not at all thinking about DS here just curious. Is it stimming, other things? Hyperactivity?

it’s just a big issue for me that because DS can’t speak people think he’s thick. I was quite blunt and said if they ever suggest that I would take him out of the new school. It’s an easy assumption to make but it really irks me. There was a mum on here with a completely non verbal child who will now be about 12. He is fluent with a phone sized device and made it through MS up to secondary. She said when people speak to him he types so quickly often they don’t realise initially it’s the phone speaking and not him. She sent me videos of him having the most complex conversations just on the phone. She said she would often say to him could he please tell her x and he would reply on his device ‘I can’t mummy using my mouth.’ He has a severe dyspraxia diagnosis too.

i would think he would be in your group b Danni as his work especially spelling was very advanced. Perhaps it’s just a coincidence all the non verbal ones are in group a. My other fear is that school will just assume DS will never talk and will give up with this. However whether any of these fears will materialise yet are to be seen!

glad you are feeling better Danni.

Sorry wrong way round with a and b. You get my gist tho.

carrie I think special schools tailor their approach to the cohort that they have and I expect that can vary a lot. As far as I recall, when danni’s ds started they did not have that split, it was probably introduced based on their experience with the group. I’m sure the other group do sensory and movement activities too but they don’t need as much input.

danni glad you’re feeling better. What a relief.

Carrie the other group do do the sensory part, just not as much as ds group. everything ds group do is all sensory related. His teacher was explaining it to me.

So my observations with ds group are, they are the kids that don’t sit down or still, touching each other, making a lot of noises, ds was grabbing one of the kids water bottles and squeezing it all over the table, and the teacher was having to clean it and all the kids were splashing the water all over as the teachers were mopping it up, that kind of thing, one gets distracted they all follow, limited attention spans, and not aware of boundaries / social expectations, and they have to have more staff for this group, they are stimming a lot, they don’t tolerate too much noise / too much going on, and they are lower ability with their work. So I zoomed in on some pictures on my app and 2 of the children are doing satpin phonics, I think the girl has just turned 11. They also seem to be the hitters, the ones who have more meltdowns, and they have to use pecs to communicate and makaton, so really the behavioural side matches ds really well, but he can talk and communicate I think that’s really the difference. And I think that’s the reason ds has moderate and not severe diagnosis because he is not as limited in his communication and talking abilities. The other group I’m sure still have some of the above going on, but when they were all joined together I remember thinking wow she seems chilled, he seems different to ds and now I see they aren’t in ds group. I’m putting 2 and 2 together on that part but makes sense.

Obviously his school will have the reasons why they are in that group and the others are in the other group, but I think it’s loosely based on all the above x

And yes I know what you mean, I feel people do judge, ds school were surprised ds could read and write when he started, based on reading his ehcp, so they made a judgment on ds intellectually based on some paperwork before they met him, they gave ds some basic phonic sounds when he started (he was reading either level 6 or 7 at home by this point) and his teacher said to me I was surprised he knew them actually 🤔 I can remember writing on here, they’d given him really basic work and his teacher had to give him some other stuff but it’s when he said ‘I was really suprised actually’ Why what exactly were you expecting?

I must admit though I did assume non verbal meant similar but this was years ago, when ds had not long been diagnosed, before I knew what I know now, I think it was when I read the book the reason I jump and see the boy who wrote it was non verbal, and I thought what the fuck! how is that even possible, I hope I don’t sound an arsehole but I genuinely didn’t understand how. Obviously im more clued up now and realise autism and SEN isn’t a one size fits all! x

My throat feels better a bit but I’ve been sick 3 times today, just coming out of nowhere. I’m not sure if it’s my antibiotics, I usually have amoxicillin but I’ve got penicillin v. I think I had it once before but don’t remember being sick.

I feel really low energy today x

CAMHS have started ds on 25mg of setraline a day.

They are making it at the compound chemist into a liquid, CAMHS phoned the chemist attached to them to request it made into a liquid, so Friday I have to pick it up, they’ve increased his atomoxetine from 12mg a day to 18mg too.

They had a learning disability nurse to meet ds and he said get your bag and get out of the room I don’t like you, practically threw her out, would not engage at all he started getting really agitated and trying to swipe her.

They wanted his blood pressure and he freaked again nearly making himself sick, so the adhd nurse said if we don’t get this over the next couple of appointments we will have to discontinue his medication as it’s not safe to keep prescribing. 😔 no idea what they are going to do but he won’t have it done.

ive said I will give it a few weeks for setraline to start working and then I’ll start trying to do it at home, the adhd nurse said for me to take a reading and a photo of the reading and he would accept that.

I’ve probably more chance of winning the lotto than getting it done but what can I do?

I’m really not liking ds taking all of these medications either.

I know he needs them but he’s taking 4 different ones now including his sleep stuff.

Needs must danni. If it helps you cope and settles ds down then it's worth it even if it's not what you hoped for. Has he started new doses yet?

Ds had an extra swimming session today for a reward so he's been at school all morning despite a bit of a struggle to settle him when we arrived.

Really hope you're feeling better @danni0509 and the new meds work for DS. Frustrating that it takes so long to see the effects/can be so unstable.

@carriebradshawwithlessshoes there have been a couple of news stories from the US recently about non-verbal autistic people graduating college/Uni that I've seen on Twitter. It's a really good reminder to not assume any correlation between verbal ability and other abilities. There are lots of reasons to be n-v it doesn't mean a person can't learn/process/communicate other information very successfully. Is it useful if I dig them out to share with the school if needed?

Hope everyone else is doing well!

Just a quickie to say thank you Light!! I’m interested too.

Danni hope that you are fully recovered. I do understand your reluctance re the medication but it also seems like there is a lot of potential there to make life less challenging for your DS (and you).

Light I read about those Berkeley graduates too, I think that one of them is going onto do a PhD in neuroscience.

We have had a challenging few days here, DS is being particularly impulsive, aggressive and defiant. I got an email from the EP trainee and I thought hurray progress - only to find that it wasn't their report just links to organisations that I already know about I am sick to death of professionals signposting these 'resources'. One of them is a local autism charity whose trustees are rather challenging characters. 4 weeks until the SEND Tribunal hearing but I am not hopeful that it will go ahead.

My next door neighbour made a pejorative comment about the state of my garden earlier. I just had to walk away as she nearly took the fall for all my pent up frustration and anxiety. She does know that I am a lone working parent and is obviously aware of DS's behavioural problems - I really don't understand why she would talk to me that way.

Is she older Dimples? We live on a cul de sac all neighbours 75 plus and v house proud. One said to DH he thought we were leaving it too late to cut the grass (???). On one hand they are OK (no trouble) but are all like Hyacinth Bouquet. Curtain twitchers and so on. I’d just answer sharply that you have other priorities and then walk off (or tell her to sod off.) Neighbours can be pains in the arse in my experience.

Thats not on dimples maybe she could help you do it rather than being a dickhead! When exactly are you supposed to have time? Between work and the kids and all the appointments / dramas, it’s not like you can even afford to pay somebody being a single parent and all these price rises etc! Cost of living is just getting ridiculous now.

If lived close I would help you do your garden! 100% x

Ah thanks - she is in her early 80s and I don't think she's likely to start work on my garden any time soon! Hers is immaculate. She is not a happy person. The garden does look worse than normal as I have whole heartedly embraced no mow May! It's my day off today but it's drizzling here and anyway I want to have fun with DD so it looks like the garden will have to wait again.

Sorry dimples, tell her you're rewilding. I hope you have had some fun with dd today.

Another one in the 'tell her to sod off' camp dimples. I imagine she probably doesn't have anything else to fixate on!

Dd was sick last night so is home for at least 48hrs, typical that this happens days before half term. Hoping ds doesn't catch whatever it is as it's his school play tomorrow and I wouldn't want him to miss it!

Oh no, liv. I hope ds doesn’t miss out (& you!).

Fingers crossed no-one else falls ill Liv

He's gone in phew! Thankfully everyone else seems well!

Here is the link to the main story I saw @carriebradshawwithlessshoes . A couple of friends independently sent it to me, so I think stories like this do a lot for awareness even among people who aren't in the autism community (hopefully!) I realise there's a danger we start to define "success" in unrealistic ways, but it should hopefully open some people's eyes to not making any assumptions based on how somebody presents on the outside.
abc7news.com/uc-berkeley-cal-graduation-nonspeaking-autism-graduates-david-teplitz/11870714/#:~:text=David%20Teplitz%20and%20Hari%20Srinivasen,the%20first%20nonspeaking%20autistic%20graduates.&text=BERKELEY%2C%20Calif%20(KGO)%20%2D%2D,graduated%20with%20honors%20this%20week.

And then I also saw this one:

I wonder if you could find a "No Mow May" leaflet to stick through her door @dimples76 ? And then based on DD's insistence that April Fool's Day lasts not only for the whole of April but also through May and June (and any other time she feels like playing a prank) you could just cross out "May" with a Sharpie and write "2022"?

I sometimes feel a bit sad my neighbours are not that friendly (happy to say hello but I've never been in their house on one side, and on the other side only to help out occasionally if she can't manage something) and they never took up early invitations to come over (I grew up in the countryside where you are pretty stuck in the pockets of any neighbours you have!) But reading that I'm starting to think maybe I'm lucky!

Actually my MIL did once cast an eye over my front garden when DC were small and say "well, I suppose you don't have much time for gardening these days" and although it was super rude it was (a) true and (b) she didn't mean anything by it - she was just a very literal person (hmm.... ) and didn't really think through how things would land before she said them. Although it sounds like your neighbour's comment may have been a bit more pointed!

Hope DS enjoys his play @livpotter . Is he performing in it? And I hope DD is feeling better today?