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

Oh and I got a millionaire doughnut 🤣 still not worth £27 though.

I'm sorry Danni but the mother cluckers story made me laugh!

Wow that McDonalds was expensive. Unfortunately I think DS is ready to move onto adult meals. He completely finishes his happy meal and tries to scrounge more food from DD.

I learnt today that DS's 1:1 wasn't in on Monday or Tuesday so I am sure that is a big part of the dysregulation this week. He has been significantly better this evening ...hope that I haven't jinxed it by typing that.

I can't remember if anyone else has mentioned it before but I am currently listening to Odd Girl Out by Laura James based on her experiences and research of being diagnosed with autism in her mid-40s. I am finding it very interesting.

I was off work today with DD and I am wondering if I am just not very good at this parenting lark. The number of times I was told today 'you've got your hands full there'! And I thought this is my 'easy' child. I don't feel that I have any control over either of them.

We have EHCP AR next Wednesday so I am going to call school tomorrow to see if we can present a united front to case officer re the need for special school

Resurfacing from Easter hols, I’ve been reading though. Hope everyone is well, it’s nice as always to read your updates.

Dimples, I’m not sure there are any easy 3 year olds! DD was a little madam. I remember going to some rhs gardens and her just downing tools and refusing to move. I did the supposed tried and tested walk away and she will follow thing, only she stood there, arms folded, glaring at me. After shouting her name (loudly) and looking like he most incompetent mother this random woman said ‘you do know she’s not coming, don’t you??’. 🤣. I have a work colleague with a DD of that age and I’m amused by her stories. Last week she said she threw her through the nursery door and said ‘good luck to you! She’s all yours, I’m off to work.’ 🤣🤣. So not you…!

so summary for us…

really good report pre Easter, apparently he had made loads of progress in the last term. Easter started rubbish with an ear infection, but then we went away for a few days which was lovely. Lots of nice restaurants indulging DS in his all time favourite thing of eating. Hotel with a pool which really is the main thing the kids want, DH says we should just holiday in a chain hotel on the m62 each year so long as there’s a pool. Easter was at family’s then the second week the family wedding which I was literally having palpitations about.

it was better than expected, DD was a bridesmaid and looked beautiful (i so wish I could share a pic), DS in his little suit looking far more innocent and cute than his behaviour often reflects 🙄. Didn’t like his corsage and kept flinging it off but otherwise he overall enjoyed it, esp the dancing in the eve. I did get annoyed though with the general approach to him, people looking sympathetic, holding his hand, talking to him like he was stupid etc. He behaved really well but obviously doesn’t talk back when people talk to him and did look a bit shy at times. I felt very uncomfortable (not with him but with how people were with him) but maybe I’m just too sensitive.

after sharing the story with the medical product that we were messed around with I went back to the consultant all guns blazing (thanks Uno, I loved your suggestions in particular). Lo and behold it’s now apparently all ok, so it’s something to try. Will keep you updated.

the latest travesty is DS needs glasses. I’ve a separate post on this, there is as much chance of me being able to fit into some size 8 jeans as him keeping the bloody things on. He would hardly even try. Kept pulling them off. God knows what I’m going to do. I thought (as always and as always obviously wrong) that school would have a strategy. When I raised it they said ‘oh, x (in the same class) won’t wear his either so they stay in his bag all day.’ I was like… oh, right. How useful! So I’m not confident.

otherwise plodding on as usual…

dimples three is a tricky age so don't beat yourself up. It's a shame people can't be more supportive rather than make pointless comments. Has anyone seen Anna Mathur's movement on Instagram? You tie a ribbon to your bag and it shows other parents that you're open to receiving / giving support if you or others are struggling. Such a lovely thing. Good luck with AR next week.

carrie glad wedding went well and that ds is making good progress, you must be pleased. Also with the backslide on the medication. It's all a bit strange isn't it. Maybe it will just take time for ds to get used to glasses, especially if he realises he can see better with them. Always a bonus surely?

danni your ds does that to get a reaction, they surely know that. It's never a dull moment with him, is it.

This week has been pretty good for us, we're never quite sure what it's going to be like after a couple of weeks off. He had his introduction to the play therapist so next week his proper sessions will start. He will have at least 12 sessions so hopefully that will help his anxiety, we'll wait and see. Sleep continues to be up and down. We had a good playdate with one of his (non-school) friends this week too.

I see DLA and CA have gone up 10% which I guess is pretty good. Could people post any recommendations for equipment and or services / therapies that they have found useful? Thanks.

Meant to reply to your thread re the glasses Carrie. If you find a successful strategy please let me know! DS hates his glasses. He used to wear them in school but won't do that either now. He really doesn't seem to recognise any benefit in wearing them. Your post has prompted me to give it another go. I'm not sure which is more stressful for me - taking DS to the dentist or the opticians. At both I feel acutely embarrassed (about the poor tooth brushing and lack of glasses wearing) and DS goes wild. I need to make appointments for both. There's no way my DS could wear contact lenses - his personal hygiene is not great and he prods and picks at things

How bad are his eyes dimples? What’s his prescription? Do you think it affects his learning?

Re me being happy Open about the school report that says he’s made great progress, yes and no being honest. I had great hopes for this school and they made some strong statements (‘I think you will find he changes very quickly once he starts here’ and so on.). Intensive salt every day, them saying they knew just what to do with him etc.

As a dr said to me years ago, the real assessment of progress is the child before your eyes. Not really whether they have a diagnosis, or an irregular mri or a condition such as epilepsy. It’s how they present, who they are.

I said to Dh the child before our eyes last Sep couldn’t speak. He still can’t. He had no alternative method of communication. He still doesn’t. He had toilet accidents. He still does. He wouldn’t write. He still won’t. He didn’t dress himself. He still needs help. They have had him 8 months for 6.5 hours a day to teach these things.

I often wonder if IABU to not feel ecstatic that we are where we are. Still!

carrie have you seen no changes in him at all since last September? What are school saying the progress is?

School say he will now sit in class for a little longer. They say he will sit in a smaller group for a lot longer. They say he is doing work with them aligned to the work he has always done with me at home. Initially, there, and at his old school he was very hyper, just wanting to run etc. they see this as great progress. They say thru feel they are seeing the ‘real x’ and his abilities. That is where they are coming from.

but obviously at home he was doing all that anyway and as I say on here often we lived and still do live quite a typical life re eating out, hols etc. so none of that has changed.

the things I mentioned above were the huge gaps in his abilities which if nailed would permeate down into a different and better life at home but those things are still the same. So him showing school what he can do is obviously nice but not a different child for us. Does that make sense?

Carrie ds started his special school 2 years ago (May 2021)

I think I’ve said before but he never made any progress there for over a year, just terrorised the staff every day. I think they spent that first year managing his behaviour and nothing more. They used to say to me if they got him to do 10 minutes of work in a day they counted it as a win.

He still does terrorise them to a degree, but he has made progress over the last year, not just academically but socially too, he’s tolerating being around other children now which he previously wasn’t at his old school. He’s learning to follow rules, he’s coping better with changes (new staff, new taxi driver and the forever changing of his PA, sharing his taxi with the other pupil etc) some are small things but I’ll take them.

Although he’s not making progress with everything, and I would say gone backwards with some stuff ! Like he could write his name there when he started, he’d been writing it a good while. Then for a long time he couldn’t write it, it was during the year ‘they counted 10 minutes of work as a win’ he forgot how to write his letters 🙄 then he’s been doing swimming lessons with a specialist swim teacher at school for 2 years and still can’t swim (at all) I can’t fathom that!

He still can’t dress himself, he still can’t really write sentences, but does write words, he has only progressed 2 reading levels in 2 years which does annoy me. He told me earlier 4 + 2 was 7 so I’m not sure who’s teaching him his maths, probably another pupil knowing his school! 🤣

Have you revisited the medication idea? Would you try atomoxetine again? Ds has been on this for a full year now, he’s ok with it. Maybe why he started making progress eventually. 1 year on the medication, 1 year of progress ? Who knows!

I do think that’s what dc’s are like though carrie. Ds school put something on evidence of learning app the other day about ds being able to do something 3 out of 10 times, when he would do it 10/10 times at home. I would bet £20 on him doing it every time at home, I get irritated with school when they put things like that, bcos I know he does it at home every time, it’s like they are saying to me he can’t do it yet but he’s trying when I know for an absolute fact he CAN do it. 100%.

So school will think your ds is making progress if he does it at school if they’ve never seen it before. Which I can understand them thinking like that.

I do understand how annoying it is for you though.

She recently wrote on the evidence app that ds has made so much progress with his speech and he’d used the word ‘guitar’ I thought it was daft, how does that show his speech is coming on, he would be able to say that word years ago, maybe it’s just she’s not heard him say it before.

(She’s definitely heard him saying fucking before though) 🤣

carrie I think that is progress and it’s a good thing if he’s now presenting similarly at home and at school. This means he feels more comfortable at school and hopefully that means progress will be easier going forward. These things have to build on foundations and you may find progress accelerates or it may just be steady which is also good.

I definitely don’t think they did themselves any favours by claiming how quick and how significant the changes would be once he started there. They had no way of knowing really.

Ds has asked me to buy him 3 items off Amazon this morning. (That don’t exist)

item 1 - a badge that says millionaire.
item 2 - a badge that says billionaire.
item 3 - a badge that says trillionaire.

He said that he wants to wear them pinned to his jumper for school on a Monday, Wednesday and Friday.

Kids an absolute fruit loop. 😂

danni with our autistic dc so much depends on how all those metaphorical dials are set on any given day and how comfortable they are in the environment. Also how much they want to do the thing. Ds’ teacher says she can’t get ds to write but I’d be able to get him to write a short sentence if I motivated him enough.

danni you need a badge making machine!

Ds generally wants me to buy toys he’s seen on YouTube that you now have to buy second hand at inflated prices because the video is 5 years old.

With writing I think the main issues is that he doesn’t know how to spell all the words. That makes him not want to try.

Thanks both it’s so nice to hear different thoughts and perspectives. Sometimes I feel I can get into a very one track way of thinking.

the writing is a funny one . DS can spell as in he could select letters to make the word (say from scrabble type plastic blocks or hopefully on a keyboard soon.) I think when it comes to writing it’s twofold for him. First the physical link of his brain telling his hand how to move the pencil. For that reason he’s no good at drawing either. Second he gets zero pleasure from it. There’s no sensory feedback and it’s not something he finds interesting or motivating or wants to do.

carrie does he write his name in a birthday card?

No he won’t. Sometimes he starts screaming the minute I even try to get him to hold a pen. School say there he’s started to write a bit but not much

Did you think about adhd medication anymore @carriebradshawwithlessshoes

carrie have you tried something like this a squiggle writer which would give some sensory feedback?

But yes, it’s a hard one.

I know where you're coming from Carrie. I have had that many times where school or nursery have been excited about a new skill but it is something he has been able to do for a long while outside of school. I think Danni and Open make good points in that it's still progress if they are now able to do things at school that they weren't able to before. The fact that he is now able to stay in the classroom more means that there will be more opportunities for learning.

Danni that is pretty impressive progress from your boy isn't it - he has come a long way

Carrie DS has astigmatism. His eyesight isn't too bad (they said if he was an adult he wouldn't need glasses to drive). However, at the last test it appeared to have deteriorated but both the ophthalmologist and I thought it might not be an accurate result because DS was all over the place.

Yesterday DS decided to 'pop off' the rear view mirror in the car. When I saw what he had done, DS reassured me that I could just pop it back on. Needless to say, I couldn't. The guy at Halfords was really perplexed as to how he had managed to do it and it took quite a while to fix - which they very kindly did for free.

Hi all. Sorry not to be posting, I've been reading along. DS doing well for now but my work has deteriorated so looking again for new options with hours that fit..tricky!
Just went out for another 23 min run which made me feel better and had a nice day round town.
My DS is very similar with writing, he can write his name now but doesn't like doing it. Interestingly, on a laptop he can apparently type sentences at school, so understands much more about writing than he can produce. I just keep plodding on but don't push it! PDA just means that everything has to be DS' idea, or that he thinks it's his idea anyway! Dreading Monday and work, but not long till the bank hols!!

Oh gosh on the mirror @dimples76

Sorry Danni I didn’t respond re meds. I’m not sure really . For DS I felt they had too many side effects. When we saw the London neurologist she said (she was v outspoken!) that she didn’t think DS had adhd, she thought his behaviour was all part of the package of what he was. She was quite scathing about meds which she said was a sticking plaster without really looking at the cause and whether that could be improved/ addressed. Her suggestion (which we are going to try) looks at it from that angle so for now I’m going to hold fire to see.