Primary school auties: summer and the new academic year - thread 7

[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

@openupmyeagereyes no, we are under BCP. They originally had her on around 12k and then school and I caused merry hell for the LA and it more than doubled.

Still ended up sharing a TA for much of this week though!

What are they spending it on?

Her 2k of SALT isn't included in what they receive, the SALT bills the LA direct.

She is meant to have full 1-1 but I have no idea how much a 1-1 costs

Mumofsend Ds was getting a full time 1:1 in london on a 15k plan. What on earth are they doing with all that money?!

@livpotter blimey!

I know I insisted on the correct training being implemented for all staff so that could be a decent chunk of it but who knows.

That is a lot! I think that DS's is about £15k, it was about £21k when he started with full time 1:1 (plus 10 mins extra at the start of the day). Since then the LA has changed the way they calculate support hours and I don't think that the SENCo is v good at playing the game. So the quantification is like - staying on task 6 x per session @ 3mins. I think that the way the LA is making them quantify support time the school needs to work back from FT 1:1 support hours and break it as that is what he needs and what they generally give him.

DS has started pulling his hair out again. I'm trying not to dwell on it too much.

I have started working with the post adoption team and next week is all about DS's need to control and how to lessen it - so I'm looking forward to hearing about their recommended strategies.

I need to do the appeal form re lack of OT provision in EHCP

Hello

Haven't been on MN for ages! But now I've found this thread maybe I will more. DD (just turned 8) has just started Y3, ASD / PDA but undiagnosed as yet - we're in that place of waiting for assessment, waiting for EHCP response, waiting waiting... a bit in limbo really. She has an LSA to support her in school, but not a 121. She needs one though, for anxiety and mental health support really.

Anyway, hi - it's lovely to have found you all, realise there's a lot of history to this thread, hopefully I can catch up!

Hi @florisse! My DS, 6, is asd with highly suspected pda (only managed to get asd with demand avoidant tendencies written so far!!) He has just started a special school as unable to cope in Ms with sensory overload etc. But he is still finding coping with demands hard, they cause anxiety, which with him leads to challenging behaviours if allowed to build up. He so wants to do everything they ask, bless him, but he can't do it long term without panicking so I'm now trying to convince them he is pda!! Just reorg house today as fed up with stuff everywhere! DS not liking me recycling anything though...! DH out at work. Went to a local event yesterday and the Guides were there with a game throwing bean bags but you had to get a set amount to win a prize. All other kids helping themselves to sweets etc. DS in floods of angry tears as he couldn't throw the balls well enough to get a sweet, he has motor skills delays, I looked at the woman running it like come on he's on the spectrum, but she just told him it was only a game. Ended up getting money our so he could have another go but it really overshadowed our day for a while there. I wish the whole world would sometimes think about how hard even basic things can be for our children.

Dd has finally begun keeping her seatbelt on. Not sure it'll last but I'll take it for now. The furthest we've managed to get out this weekend is the local shop though, due to shoes/ socks refusal and repeated meltdowns and wthdrawl to her bedroom today. At the end of my tehter. Dh in hospital (again) meaning I can't even get out in the fresh air for half and hour. And poor ds has been stuck on the xbox entertaining himself while I've been dealing with her. I feel so, so low with it all. This is worse than she's ever been. I should look forward to my weekends but I just dread them.

My DD is starting to get better with the seat belt. She is understanding that if she undoes it I pull over and the harness goes straight on

Hello Florisse, nice to meet you virtually!

Whatafc, sorry it’s been a hard weekend. Sorry if you have talked about this and I’ve missed it, hope DH is ok and home soon??. Do you have family near? Can they take DD or DS for any time, even if not both?

DS has continued to cry but this afternoon has perked up a bit so will see. It is absolutely agonising to have a child in severe distress and not to be able to ask him what is wrong. A year ago I had a bee in my bonnet about wanting him to stay in mainstream. Now I would send him to Timbuktu if they could just teach him some basic communication methods. How can anyone have a child with whom they absolutely just cannot communicate (even leaving speech aside??).

The comments on HE/ joint attention from everyone were really interesting. What ive realised is that yes I could HE DS and most probably do very well with academics. But where I just don’t know what I’m doing us things like your attention bucket example, and I’d rather in reality him be able to share joint attention with another child for 30 mins than be able to do complex maths. And I can’t teach him to talk (if anyone can) when he can’t even repeat a sound I make… lots of talk of echolalia upthread and that was my NT DD and I thought was really how all children learned to talk, but not DS. When I say ahhhh and he says mmmm or even says nothing. I mean honestly, what the hell do you do? This is where he needs specialist help away from HE…

Danni how are things? I was thinking about school. Stripping it all back, do you think that DS behaves worse there? I know you have said he is what he is but I don’t recall you saying he is so extreme at home? If so, why do you think he’s worse there? Where I’m going with this is you manage him really well, you have said that. Can you take any of those strategies into school? Even go in for a few hours, just observe, show them how you deal? You shouldn’t have to of course but if it works for you and DS then I would have thought they should be as consistent as they can in school?

Just a thought.

Thanks for the welcome! @Whatafustercluck that sounds so hard. Last Christmas we went through a phase where my daughter couldnt bear the feeling of most clothes, especially shoes, and we ended up staying home for days at a time with her wrapped in a duvet. Eventually managed to get her out to the park, albeit with bare feet - we got some looks and it was freezing outside. But she needed to get out, and that was more important than warm feet at the time! She hasn't worn socks or underwear for about 2 yrs now (nor dresses / skirts obvs!). The sensory stuff can be so difficult.

@MagratGarlikInDisguise it's hard to persuade people about PDA - wasn't even sure myself for ages but it made sense when I read all the info on the PDA society website. Maybe share some of the resources with school?

AIBU or does anyone else lose contact with friends (not their fault) just because you just don’t want to hear it? As you know had a terrible week with a 6 year old who can’t tell us why he feels ill, I’m lucky in that I can leave him with DH whilst I go out (meal Sat with a good friend), her 2 similar ages to ours, grandparents similar ages to ours and so on.

So I relay… school woes, can’t meet needs, speech not advancing, everyone written him off, full week of screaming and throwing himself on the floor god knows why.

She was sympathetic I’ll give her that, then said oh!! DH and I are heading off for his bthday, Rome, 5 nights!! Soo exciting!!! I’m booking all the best restaurants, we are in an amazing hotel. Grandparents sharing the kids, but that’s all fine, no issues there! Planning my wardrobe… and so on.

Is it really any wonder why when you have DC like ours you lose friends or is it just me being old and bitter that doesn’t want to sit debating which high end Rome restaurant to book for the Thursday night? It’s so unfair. Equally I suppose she can’t not tell me.

Moan over. Happy Monday all x

@carriebradshawwithlessshoes I get this, it feels like I live in a different world a lot of the time.

I'm finding it really hard with my lovely mum friends with DC the same sage as DS as their DC are now overtaking DD too who is 2 years older. Its really hard to hear a lot of the time :(

Do you think you will stop seeing them or grit your teeth mumofsend?

Welcome florisse, PDA must be tough. I hope your dd can get the support she needs.

Whata great that dd is better with the seatbelt. We found ds went through phases where he was ok and then phases where he'd try and escape. Like many other things, it wasn't exactly linear but hopefully you're heading roughly in the right direction and you get there with time.

carrie I hope ds is better today. Whether to HE is a massive decision with many factors at play obviously. What some parents find is that their dc will learn and practice skills with an adult first and then use them with other dc (adults being more predictable and 'safe' than other children). I learnt about the attention bucket from a weekly playgroup that we attended which was run by the specialist teaching team before ds started school. It was supposed to be about building attention using different activities and was highly structured but was largely pointless for ds who often just ran around with another boy. Still his mother and I are still friends so it was worth it from that point of view!

dimples sorry ds is hair pulling again. Good luck with the appeal.

Magrat poor ds, what an unsympathetic woman. I think these things should always have a small consolation prize or it's just so unfair.

carrie sympathies on the Rome discussion. Other people's lives can be so different can't they. If she is otherwise a really good friend then I guess you'll just have to let it go. I'm sure she's excited but knowing your audience is a good skill to learn I think! Remind me, does your ds have SALT input?

We had an up and down weekend. Some difficult behaviour from ds, mostly around screen time but not exclusively. He went into school this morning but when I left was trying to get out of the door. I hope they managed to calm him down.

Thanks Open. Fingers crossed for DS I’m sure they would ring you if any issues.

I’m at the end of my tether with Salt. We have paid thousands upon thousands of pounds for this and they don’t seem to have got anywhere. He struggles to copy any sounds and won’t engage with pecs. Struggles to copy per se so can’t sign. At school just wants to run off when they try to engage him. At home very sociable with them but as I say struggles to copy the sound and then very fleeting with other forms of alternative communication.

They perceive this as all being on a hiding to nothing, tell us to ‘persist’ at home with pecs/ sound approximations and then just piss off. I can count probably 6 salts over the years that have done this. But he HAS to know how to be able to communicate other than ‘his’ way which is just getting more entrenched as time goes on (leading us to stuff, eye gaze and very often just a tantrum). That really has its limitations. I need someone to work with him intensively day in day out and not give up which is what the salts do (or rather then just pass the buck back to me.. and I’m happy to do the backbreaking work, don’t get me wrong, but someone has just got to get him started).

This is one of the reasons I’m thinking he must go to a specialist provision as what else is there left to do in terms of communication help?

Bloody partner at the salt company after her last colleague ditched DS and has now left just wrote us a cheery email saying the colleague had left and did we need any further service?? Oh no, none at all, our DS is communicating beautifully now thank you so much!!!!! Gets me more angry and frustrated and upset than what I can ever convey on here.

Have you tried AAC?

It must be incredibly frustrating for you. I presume you know about the skills in the communication hierarchy and that you’ve tried programmes like Hanen’s more than words? I’m sure I’m teaching your grandmother to suck eggs here but you never know.

Quite a while back @danni0509 posted about how she worked with her ds when he was largely non-verbal. I can’t remember exactly what she did.

childrenstherapyplace.com/language-development-pyramid/

Danni feel free to repeat if you don’t mind!!

Yes, the pyramid… like many of our DC he isn’t linear so has no play skills but does follow some directions. I also don’t get it in that I know lots of kids have huge trouble listening and paying attention but do speak! I think for DS the trouble is copying, he has never really copied and you can’t prompt a verbal copy easily. Even stripping away understanding I remember DD aged 18 months copying repeatedly a rude phrase of DHs overheard, she had no understanding but could parrot the words. Well DS can’t even do that.

As mums there’s so much we are best placed over others to do and achieve with our kids but this reduces me to the depths of depression. Trying for an hour to get him to copy a sound and him just looking at me confused, or he moves his mouth/ lips around trying to find the sound shape but nothing comes out. I could just cry (and do, frequently). Then I get the pecs book out and he just runs flapping it with all the carefully cut out symbols just falling off. I don’t think he’s ready for an aac (electronic) his fine motor is too poor.

And then of course it’s a downward spiral, because he has no mechanism to consistently ask and then receive he just loses the whole understanding of communication ie you do one thing and then something happens back. So if I know he wants say a crisp and they are on the work surface he will pull me over or try to reach them, if I put them in a drawer and show him what I’m doing (where he can’t reach) he will just shout for a bit and then look forlorn and walk off and give up.

He needs someone with him working on communication in whatever guise day in day out and maybe I’m a terrible mum but I just can’t do it, I honestly don’t know what to do and it’s so upsetting and depressing when he just can’t do it, I feel so sorry for him and just give him the bloody crisps!!

I do not for one second underplay the stresses and trials that others post about on threads like this, certain posters in particular. But I wouldn’t wish our situation on my worst enemy and honestly do not have a clue what to do about it.

I wonder if it would be worth trying an AAC app anyway, as it might be more motivating than PECS. I don't know if there is affordable software you can put on a normal tablet to give it a try?

Welcome @florisse! My DD is in Yr3 too. She's having problems with trainers at the moment but luckily her school shoes are still OK so we're managing ... but she was objecting to wellies at the weekend and you do just see how easily you could lose the ability to go out at all. Luckily we went somewhere with water and she agreed to change from her school shoes once she could see some mud/water she wanted to get into with her brother. I do think a sibling can be mega-helpful sometimes. Somehow seeing a sibling doing something is much more motivating than a parent nagging you that you might regret your shoe choice later...

But we've done walking along the pavement in just socks because everything else is too hard, trying to keep an eagle eye for broken glass and dog-poo...

Anyway, lovely to have you on the thread! Does your DD still manage to get to school or are the clothes/shoes issues too difficult? I hope you can make some progress with the Dx - but are school being supportive in the meantime?

Carrie I’m not sure anything I have to offer will be useful for you, ds could mimic sounds / words so I don’t really have any advice for that specifically, I’m sorry.

Ds could say words but they were just not used in context (exclusively echolalia) for a long time he did this, I used to play games with him to help his understanding, he could say loads of things but had next to no understanding (which is unusual as it’s usually they understand, then the words come) he could say over 100 words (I used to write them down) but he didn’t understand what he was saying, he couldn’t even follow the instruction ‘sit down’ he was about 4 at this point, his understanding was virtually non existent, so I had to get him and sit him down and say as I was doing it ‘sit down’ stand him up and say ‘stand up’ then sit him back down and well you get the idea, and everything was taught like that.

Then once he learnt, I used to say ds get mummy red crisps from the cupboard, then as he got better moved to 2 step, ds get mummy red crisps and daddy blue crisps from the cupboard. (Although he still is poor with 2 step instructions, he doesn’t have the attention span for it, it’s been recently put in his ehcp as a target for next year to be able to reliably follow a 2 step instruction)

I had to manually teach him how to answer yes / no with a silly game, but it worked. Once he knew the characters of tv programmes I would be really silly and say, for example using Thomas the tank, ds is this paw patrol? Noooo silly mummy, is this peppa pig? Noooo silly mummy! Is this Thomas the tank? Yesssss yes it’s Thomas the tank, clever mummy! And so forth. God that game was the bane of my life but it eventually taught him what yes / no was and then I adapted it to other stuff. He 100% answers yes / no reliably now.

One website I thought was really good and she deals with every kind of speech delay / disorder, was Laura mize teach me to talk, I remember every night when ds was 2/3 years old listening to her podcasts. She still sends me emails now which I read.

Hello to florisse.

Ds wouldn’t have his flu spray again this morning, no issue for me personally, he never does. I did let his school know he’s an anti vaxxer they were ok, they tried, it didn’t work out. Not the end of the world in the grand scheme of things!