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

To continue to follow and understand rules, to be aware of boundaries and that sort of thing. Then to continue to do phonics each morning and take part in group lessons,

Well this one’s quite broad. Taking part in group lessons at least means he should be participating in everything - or at least given the opportunity to.

I’ve just simplified it to fit on here, it was a little more specific than that with smaller targets to achieve this and what steps to take to achieve it etc.

I am never sure really whether to put a lot of emphasis on DSs EHCP targets. They are quite odd and I feel should be written for a 2 year old (to ‘pay attention for 5 minutes in a classroom to an adult led activity’ type thing.) Danni has made me think that they are written like that just so that they are achievable and school looks good. Dimples, what are DSs that you think are too hard?? I had a meeting with school earlier this week re targets. They are reluctant to have anything academic (they say they know he knows his times tables etc, they say targets shouldn’t be about those things?!). So God knows really.

At the moment my whole life is dominated by this screaming. The Head caught me this morning and said it had lessened in school but they want to do an ABC plan to identify why and when it’s happening. It’s hard to explain because you aren’t seeing it but it’s really getting me down. It was dads bthday yesterday, they came over but it was a total disaster, DS was just screaming and screaming and laughing. When I say screaming I mean imagine saying to someone literally scream as loud as you can and as high pitched as you can like in a horror movie, give a couple of seconds to breath, then do it again. After an hour I was in tears and they just left. He had actually been fine before they got to us. Uno, yes I said to him about hurting his voice. It’s almost thought like Dimples says he just does it regardless. Doesn’t understand he’s causing upset.

He can stop though because I then made him follow me around the house last night. Everywhere I went he went. He would sit watching me intently and every time he started with a slight squeal I would just glare at him and he wouldn’t go any further. As soon as I though said ok, go and see grandad he would run to find my dad and grab his hand and just scream. I’m exhausted with it. The Head said they were going to try and get a private taxi sorted as it is upsetting the kids on the bus.

I then had the pleasure of a routine call with DSs consultant, not sure of your drs but this woman generally is the most pessimistic woman ever. She has numerous adult kids with ASD and other things and just says it’s shit and stays that way. I’m like…. ????!!. Nothing positive offered, no suggestions about how DS may god forbid be IMPROVED, just ‘use your DLA to pay a sen babysitter so you can salvage a bit of a life.’ Is that as good as it gets?! I may have to give her DHs number for the next call.

I think what gets to me most is I’ve always just about hung on with DS because there are things he should DO which he doesn’t do (like talking), he has never obviously done things that he shouldn’t, or that make him stand out. So the problem is what he’s not doing not what he is, if that makes sense. But this turns the tables on that totally and I have both sides of the coin to deal with. That is just impossible.

Hugs @carriebradshawwithlessshoes it sounds really hard but he's trying to communicate something with the behaviour. Could it be that everyone has been asking too much, putting on demands at school etc, and tge screaming is his way of taking back control? Could you sit with him and, instead of glaring, smile and pretend to scream as he screams but do it more quietly, then you could turn it into a song? Ooh. Ooh ooh etc.,all different notes, to see if he likes that? Try to turn it around and stop worrying what everyone else thinks of him, but help him to feel more in control so the screaming fades out?
I would try sitting next to him and starting the quieter scream when he screams,smile and be calm, then turn it into the different notes and sounds.he might love it!
Earplugs in the short term? And maybe try and contact an ot?

Thanks Severus. I will try this over the weekend. Last weekend MIL screamed back at him at the same volume and he didn’t like it at all. Got really upset and looked at her like she was mad. The quieter version is a good one. I’m perplexed about if it is a communication thing or not. I think he can and does suppress it if he knows he will be in big trouble like if he’s just with me. Other times he’s unstoppable. I think it is multi faceted. School say it’s excitement only but I’m not sure it’s this simple. Examples of it at its worst are (and aren’t these really varied????)

1. apparently at school in the toilet (echoing environment? When he knows he’s a TAs full on attention?)
2. walks nicely to the bus but then the whole time on the bus screams (over stimulated? Seeking a reaction? Glad to be away from school?)
3. when visitors arrive (excitement)?? Less so when just me and him in the house but see 6 in contra to that!
4. not really when out and about, even in busy places bizarrely
5. When we are trying to get him ready for bed (playing up/ protest?)
6. when he is left on his own in a room… he has a small climbing frame in a play room, he will be climbing on that/ faffing and will be screaming. If I walk to the door he takes one look at me and stops. He watches me walk away and as soon as he can’t see me starts again. I go back he stops. This can go on for hours.

so make of that what you will!

Or maybe carrie he just does it because he wants too. He might just genuinely like the sound, the feeling etc.

I find when people look for the ‘reasons’ they could be looking forever. Ds does things sometimes and honestly I would be here until the year 3000 working it out. I don’t think he knows why himself.

Yes to the 2 year old targets, one of ds’ is to show interest in an item of an adults choosing for 2 minutes or more…

I think Severus’s idea is good, like an intensive interaction approach to it. Getting in his world with him.

They say with kids all behaviour is communication. Not that he’s using it as direct communication necessarily, but that it’s indicative of something, like an unmet need, overwhelm, something like that. Trying to understand the when, as you’ve listed above, might be the key to understanding the why.

I’d also say that it’s possible he has a pretty good idea of the impact he’s having, especially if he’s able to stop at times. I guess from his point of view people aren’t understanding him.

Have you used the cards to talk to him about it? What does he say?

Also, maybe he knows he’s pissing people off with it, so does it more. He may like the attention it gains, the reaction from others.

Ds does this. A LOT.

Anything that he knows is winding me up, as soon as he realises this, he will do it more for the reaction / attention.

Maybe try COMPLETELY ignoring it, you can’t control everyone outside the house’ reaction (school, school bus etc) but you can at home.

Pretend he’s not even there (difficult I know) go about your business like you cannot hear anything coming from his mouth.

See how that goes, then if it lessens tell the school, school bus what they need to do.

Ds used to love me getting aggro when he was little. I think it’s the crazy faces when your cross and telling them off. He learnt to piss me off further to get that same reaction! 😳

the cards Open have been sort of replaced with the new tablet but it’s not as quick/ comprehensive as the cards for some stuff. I’ll give it a go and obviously try schools ABC thing. It’s perplexing. If he’s doing it in an empty room when playing I can’t see what he’s trying to communicate unless as you say it’s a response to other things like someone might bite their nails if they are stressed type thing.

Carrie looking at the list you wrote, do you think he's doing it so he has constant sound like white noise? He doesn't do it when he's out and about so maybe the noise stimulation from outside is what he needs? Would he maybe wear headphones and listen to music which he could control from an iPad? It may well be nothing like that but at this stage it sounds like anything is worth a try.
Also the doctor sounds like a miserable human being. Definitely let DH deal with her.

I also think severus's idea sounds good.

Open I think we may need an arc here too!

I agree re. the doctor. I’d be asking for someone else.

Liv that’s a really good point too. If he starts up in the car and I turn the radio on he stops. I thought it was because I was distracting him but maybe it is the auditory input he likes. I’ll try that and report back!

I know a few of you don’t have regular paed check ups but don’t you think this is somewhat the attitude of all nhs drs ie sorry, nothing can’t be done, you just have to cope the best you can? I know there’s been a hoo ha with the private neurologist we saw in London but at least she came up with something. I actually said to this dr last week you do realise don’t you that everything you are saying is why parents like me empty their bank accounts to get second opinions? For hopefully some constructive advice? She sighed and said at the end ‘Oh Carrie you are looking for an answer. There is no answer.’ (She calls me Carrie/ real name). I remember a similar convo when DS was about 3/4 with another paed in a general check. I told that I had delayed his school start so had a huge chunk of time to try and move him forward so he could be in the best position for when he started school and what in her professional opinion did that entail? What should I do? She looked at me like I was asking her how I could win the lottery!

DS does not (save for recently described behaviour!) present so terribly.

carrie I think the reason is that it’s not part of their paed training. They are trained to diagnose and prescribe but that’s all. I think if they want to learn more then they have to go on to do neurology specialisms etc. that does probably look more at brain development, plasticity and what interventions help. Even then, they are probably limited to peer reviewed studies which are likely already out of date as things are changing all the time.

Similarly with other doctors, they are trained to treat the symptoms, they don’t have the time to look at the underlying cause in a functional medicine approach. Dr Chattergee talks about this all the time on his podcast.

Yes and I suppose cause is often a grey area. But if you are given a diagnosis (or even if you aren’t) what you can then do to best help your child is the next question. I feel like all drs we have seen have answered pretty much nothing (beyond SALT etc).

I was talking about general medicine when I mentioned cause - like a more holistic approach.

Ah yes…. Yes, I guess so.

Hope everyone has a great weekend. I’m ramping up the music thanks to Liv I think!

That does sound hard Carrie. I hope that the suggestions from the rest of the gang help. My DS screams a lot and it's mostly to get a reaction. He also threatens to scream if he's not getting his own way.

In terms of targets that seemed to hard it is things like working independently for 10 minutes - I don't think that he lasts more than 10 seconds

Good luck @carriebradshawwithlessshoes
DS has come out in chickenpox sigh. Poorly love. Apparently his whole class are dropping with it. It's Uno / Severus here but I have name changed again after a horrible group of posters were really aggressive and horrible on a thread about whether crying babies should be 'trained.' I don't know why I get involved with these threads,honestly!

Oh no Moomin hope he’s not too poorly. At least he will have then had it. Dd and DS both had it about a year ago. Thanks for the comments and sorry about the other posters. I think a lot of people just come on here to argue. It would be lovely to have the time! I only really post on here and sometimes on other Sen issues if I think it may help. Some people are bonkers, you could post black is black and numerous people would argue no it’s white…. 🙄🙄

Honestly, I just felt so much for the op, who is being told to use the pick up put down method on a day old baby!! Poor baby and poor mum who might regret it. I know I regret my brief foray into sleep training when DS was younger (which didn't work anyway, not because I was wet or faffed or didn't try hard enough!) and I'd hate for anyone to ignore the cries of a baby only days old. It honestly makes me wonder why some people have children, which I know is judgy too, but I mean they are people not just trophies. Would you ignore a school aged child crying out in the night? No. Well then.
Anyway. Rant over, I'm going to make coffee!

Sleep training a day old baby!

Ds would only sleep on us for the first 5 nights. Then we bought a sleepyhead and could put him down for a bit. I fed him to sleep for over a year. Even as a young baby he’d only nap for 30 minutes at a time, that should have given me a clue. When he was about 14 mo we did a combination of pick up/put down and gradual retreat as I was so tired by this point. We had a wonderful year where he slept 10.5 hours a night and napped for 2 hours in the day and then it went pear shaped at 2 when he dropped his nap and we had to move him out of the cot.

I really wish I’d known about slings and side sleepers when I was pregnant but no one in my family ever used anything like that. I thought babies just slept when you put them down. Little did I know.

Moomin sorry ds has chicken pox. I do hope he doesn’t get too poorly.

Sorry about the chicken pox and the other posters moomin. People love to be 'right' on the internet!

OMG open how did you survive without a sling! Both of mine lived in them, ds becuase he would never stop crying unless he was moving (also a sign lol) and dd cause I was constantly chasing around after ds.
Sleep training was a nightmare and an act of desperation. Worked with ds but no dd and definitely not done at 1day!

Ds got star of the week this week. He get's lots of certificates for things but this is the first time he's got this one. In typical ds fashion he didn't bother to tell me about it.