Primary school auties step into Christmas and the New Year - thread 8

[openupmyeagereyes]

New thread.

This is the continuation of the thread for parents / carers of autistic children / children with additional needs. Most of us are parents of children in year 1 / year 2.

Links to old threads

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

It was fully attached carrie, he snapped the Reg plate in half like you would a ruler! 😅 would not let go despite me and the taxi prising his hands off!

Also, ds doesn’t go to an autism specific school, he goes to a general specialist school. But he is in an autism / adhd class. They try group them with similar diagnosis’ which makes sense, (3 children in ds class are non verbal) he came home the other day and said x said her first word today (the girl who he loves). I said oh brilliant ds! what did she say? in fact don’t tell me if you’ve taught her it 😂 And he said, she said ‘awwww’ when I kissed her. He is so sweet! They have all sorts of diagnosis’ at ds school, autism / adhd / profoundly deaf children / Down syndrome / moderate and severe learning disabilities.

carrie I would move your ds to this school and give it a try, it’s not necessarily the school he has to stay at, but unless you try you’ll never know if it will help, it will be heaps better than mainstream school anyway. The programmes they use etc. The technology they use. The knowledge they have. It’s miles better than a mainstream school in those respects.

So ds tells me bits and bobs, he says x uses a communication iPad, I say why does he use one of those ds? He says because he’s non verbal! He can’t ask for things so he uses his iPad to ask for it.

Then they use makaton, they use pecs, ds made a pecs communication book at school for his teddy! They laminated it all for him and he bought it home. 🤣

Ds doesn’t need any of those specific things because he is very verbal and can communicate his wants and needs, but he still gets involved and he knows loads of makaton signs because it’s how he has to communicate to the kids that can’t talk back to him or hear him because they are deaf etc.

They do attention autism bucket daily, tac pac for sensory, use the sensory gym (ds uses it for 10 minutes, every hour, like a regular sensory diet the OT devised for him) they do rebound therapy every week on the trampolines (but ds won’t do it, although he goes on his trampoline at home )

They do swimming in the hydro pool weekly.

Honestly carrie I’m not entirely happy with ds school because of the hours situation, but it is much better for ds to be here than in a mainstream school.

What I’m trying to say. Lol. They have much more available for the kids at these schools.

They had none of that at ds old mainstream.

Also carrie ds is bright, but he’s still got moderate learning disability. He was learning his 6 times tables yesterday. But has a full diagnosis of moderate learning disability.

They tailor the work to each child, so none of ds peers are doing timetables yet (his teacher told me this) ds is more advanced in some areas, so he was off yesterday doing timestables whilst they are doing another activity more appropriate for them.

But it swings both ways, they are more advanced than him in other things, some can swim, ds cant, they all seem to behave much better than ds so they have that advantage too. Plus ds at 8 is still only just learning to dress himself and his 1-1 made a remark before about wanting ds to be able to dress himself like his peers, so led me to believe he’s the only one in the class unable to dress or she wouldn’t of made that comment.

They don’t use a one fits all approach. Definitely not x

Thanks Danni. Must say I get confused re all this LD stuff! We know from what you say your DS is bright so how do they define MLD?? I would be thinking for an 8 year old that would be stuff like doesn’t know colours, numbers and so on. Not so much things like dressing which can be various motor/ planning issues.

Totally agree they can do more than mS!

Sorry carrie I wasn’t saying ds has a learning disability because he can’t dress.

I was just explaining that they all have strengths and weaknesses.

carrie I'm sorry that the school with the unit is now backtracking. I can only tell you what I would do and that would be to move him to the ss. September is not that far away now and you are not happy with his current placement. If you don't feel it is appropriate then you can continue to look for a better fit and he will be better supported during that time. Out of interest, is there any consensus, or have you gleaned through discussion with other parents, what the most typically successful setting is for children with ADHD?

Ds' school is an autism specific school but I have seen that they have such a range of children there. They have tried to group them in classes with similar children where they can but even so there is a wide range of needs in each class.

It's not easy and I know that you really want to make the best decision. Sometimes we can become paralysed by the options and more time passes without us having moved forwards.

danni ds has been awake since about 3:25 today, yawn. I knew we were due one soon.

He did go into school fine again today and stayed for a couple of hours.

Learning disabilities, in a nut shell.

They learn at a much slower pace than other kids who don’t have any difficulties, they will always need additional help, information needs presenting in modified / simplified ways, attainment is well below expected levels, usually in most or all areas of the curriculum. (And other areas unrelated to the curriculum in my experience!)

The nhs classifies it as (copy and pasted this bit) Someone is considered to have a Learning Disability when they function at a level of intellectual ability which is significantly lower than their chronological age.

They usually grade their LD on iq. Ds has never had an iq test. He wouldn’t co-operate in any kind of testing, but they can use best judgment based on presentation, his EP said MLD, his autism dr said MLD, and CAMHS have said significant intellectual disability, I’m not sure what CAMHS meant by that. But anyway, whatever. Ds school also said MLD.

Usually (here anyway) it’s global development delay until around age 7. Then they change it to Learning disability. Although I know other areas of the country wait until 12 or even older.

So learning disabilities means different things depending on who your asking! As with anything. Lol!

open I’m pleased he went in to school again today. Progress deffo! Compared to old school!

Thanks both. Re the dressing Danni it was just me mulling over what is a LD. I have to say I just don’t know!

You are both right, absolutely right. And yes Open we are paralysed. If I’m being honest we are also conflicted between what WE want for him (to stay with DD in a MS school, I sooooo relate to Dimples getting upset about this) and what HE needs. And then the uncertainty of the alternate provision. Maybe I’m just an indecisive person. Before DH I stayed in so many relationships because I wanted them to be right, then there would be the odd glimmer of things maybe looking up and I’d prolong things just because I didn’t want to make a radical change. I’ve done this with jobs too! Maybe I’m just a nutcase! 🤣🤣.

I’m not sure Open. I suppose I’m hoping that the meds can calm him down sufficiently so that it’s not an issue but who knows. I’m not sure to what extent adhd really exists independently also and not alongside other conditions.

I’ve got to be really careful how I say this too but the post of Opens, where she talked about having her eyes opened in the SS to a lot of challenges for others etc. Well at the moment we don’t have that, school is just school. There’s a bus for this SS, some of the children display lots of behaviours/ issues/ disabilities that DS doesn’t display (we see this), I’m not saying DS doesn’t have challenges he absolutely does, but not obviously so, generally (unless you try to talk to him.) DH is obsessed with DS going on this bus, saying he doesn’t want that and so on. Obviously I can take him but can’t split myself with DD. I don’t want to offend anyone at all but these things aren’t a consideration in MS are they?

DS goes to a specialist school, it's not asd specific, but they group the classes according to need.
DS is very demand avoidant so it's hard to get him to focus but some of the others have different issues. DS is very bright. He knows up to 12 timetables and can tell the time. However, he still can barely write, struggles with social interaction massively, and becomes easily overwhelmed. The work his school are doing on emotional regulation us invaluable. He has his whole life to learn about topics but emotional control and safety awareness will be key to his having a successful life.
So yes, my DS has learning difficulties because his asd and pda make it difficult for him to learn. He needs more visual and active ways to communicate. The staff are amazing and want each child to fulfil their potential, they certainly aren't just left doing playdo etc all day like the stereotypes would have you believe. DS trampolines, swims, some kids do horse riding, they go to a local softplay place, they do sensory circuits at the start of each day and yoga weekly. Most importantly, so many of the kids are like him and he finally has friends. It's a different school experience than we were expecting but there's no reason why he can't still take gcses in the future if that's what he decides. I'd strongly recommend giving it a go. Mainstream is just so underfunded and staff have so.little training and it's only going to get worse if you look at the sen budget cuts etc.

carrie some of the things I see / heard during my first 2 weeks taking ds to his special school terrified me! And I’m used to all sorts with ds. I think maybe we don’t care so much or notice so much with our own dc’s as it’s ‘normal’ to us?

Ds makes all sorts of autistic type noises. (I do know what you mean when you say you have to be careful how you phrase it. I’m doing the exact same! I’m wondering if autistic type noises is the right thing to say, but that’s what they are to me.) but his noises are just him and I don’t bat an eye or even think it’s abnormal as I’m so used to him being him, but if he makes them when we are out people do gawp at us. Becuase I suppose that’s not ‘normal’ to them.

And yes you’re right to be concerned about the copying of behaviours, ds has added a few more to his repertoire! 😂 I’m afraid to say!

magrat I forgot about yoga. Ds does that too.

Yes to it being a different school experience! I think you expect it to be how it was when you were at school? You have an image in your head don’t you. Or maybe that’s just me 🤷🏻‍♀️

Congrats on DS going in @openupmyeagereyes

It's interesting I think for DS to see other behaviours as sometimes he gets baffled or irritated about it and I think it's good for him to see that as well. E.g. one boy keeps chasing him, he said its annoying, and I said we'll maybe that's how he feels about your hugging, DS! He hums a lot as well to himself, I think its sweet but we do get looks sometimes. Or he's suddenly say 'oh my god' really loudly if he's excited about something or the other day, he said 'silly guy' really loudly at a man riding a bike on the pavement! He was surprised when they w3nt out on a trip that his friend was using a wheelchair but we talked about it and now he thinks it's cool!

carrie I did say that and it was eye opening, but I have seen that things are much calmer during the morning, I think lunchtime is still something that needs to be worked out. Also with our school ALL the children and staff are new so they are all getting to know each other which will not be the same for your ds; he will be going into a much more settled environment. At our school lots of the kids have been out of school for a year or two and have had really bad experiences so it's going to take some time for them all to adjust.

It is so much easier to move a child from specialist education back to ms so do not feel like you are setting your child's future in stone because you aren't.

Very interesting the discussion around learning disabilities and learning difficulties. Ds has never been assessed for this. I asked his teacher what she thought (not that she's an expert) and she said that he had learning 'differences'. He definitely does not pick up lots of things as quickly as other children, but as Magrat says, a spiky profile is really common. I hope that this school is able to support his learning needs, whatever they turn out to be.

That's amazing that DS managed a couple of hours at school even after waking up so early Open.

Danni what's the latest with DS's hours?

Carrie I agree with the others that it sounds worthwhile giving this SS a shot? It sounds a lot like our local one which I am waiting to look around.

I spoke to SENCO yesterday re the impending hearing and also asked her about Ed Psych. She said that Ed Psych has now agreed to assess DS (last time was almost 5 years ago before he started school) in the next couple of months. At the moment he just has a global developmental delay diagnosis and still on waiting list for ASD/ADHD assessment. It will be interesting to see what she thinks of his cognitive ability - I wonder about his IQ. It is hard to separate everything isn't it. DS definitely has poor working memory, difficulties with executive function, sensory processing difficulties, poor postural control, struggles to cross the midline, poor concentration and is hyper vigilant- is that why learning is hard for him or does he also have a low IQ? Both his birth parents have learning disabilities and were assessed as adults as lacking capacity to take part in legal proceedings but their childhoods were filled with abuse, trauma, disrupted education and neglect. I feel like DS's understanding is very good at times, he is endlessly curious and has a good vocabulary.

It’s SO confusing dimples to separate what causes what. Sometimes I don’t know if it’s ds autism / adhd / anxiety causing a specific issue, a mix of each thing, or god only knows.

I know him better than anyone and often can guess what he’s going to say next. I would say I know a fair bit regarding additional needs (and especially so with ds set of needs) but I’m often clueless. His child psychologist from CAMHS said it’s hard for them to know what arises from what when they have complex needs as there are so many crossovers.

Complicated little creature is how best i describe ds!

I find DSs inability to speak adds to the mix!! Because although he’s hugely sociable how can social skills not be impacted if he can’t communicate?? If he can’t speak in class, to teachers, make his feelings known, contribute, etc then what is the point for him, really, being in that setting?

We were messing around on Sunday with his communication cards and he told me about his classmates and that he liked most. He said he likes his one to one but not the teacher. He did say he doesn’t want to move school. He also said which he’s said before that he really wants to speak but can’t.

Magrat, yes some really good words there around emotional regulation etc. If DS can’t communicate then he cannot lead a decent life, can he?

Will resolve the bus issue later 🙄🙄.

Heard any more re the eeg dimples?

Yes although there are so many different ways to communicate @carriebradshawwithlessshoes and its great that your DS can communicate with those.

carrie ds also said he didn’t want to move schools when he knew it was actually happening. Change is hard and it was all he knew, even though he wasn’t even going in. We talked it up, emphasised the positive and once when we were out for a walk and discussing it, I said that he would be able to thrive there and he started crying and said it was the nicest thing I’d said to him. He was nervous but he’s adjusting really well. We had a really positive catch up meeting with his teacher and the head.

I’d like to point out that I say nice things to him all the time but that comment obviously struck a chord at the right time.

Yep DS didn't want to move either at the time as he finds change so hard. He tells me now how much happier he is.

I read that humming stimulates the vagus nerve so it must be very calming and regulating for them.