Thread 13: autism and any other additional needs A/W ‘23

[openupmyeagereyes]

Thread 13.

For parents / carers of disabled children, autism, adhd, and all other related neurological conditions. Most of us have children in primary school. But everybody welcome!

Chatting about anything and everything related to SN!

Links to previous threads.

Thread 12
https://www.mumsnet.com/talk/special_needs/4816294-thread-12-autism-and-any-other-additional-needs?page=1

Thread 11
https://www.mumsnet.com/talk/special_needs/4711291-primary-school-auties-11-2023-is-here 

Thread 10
https://www.mumsnet.com/talk/special_needs/4592899-primary-school-auties-10-summer-and-beyond-2022?page=1

Thread 9
https://www.mumsnet.com/talk/special_needs/4502988-Primary-school-auties-thread-9-spring-summer-2022

Thread 8
https://www.mumsnet.com/talk/special_needs/4422100-Primary-school-auties-step-into-Christmas-and-the-New-Year-thread-8

Thread 7
https://www.mumsnet.com/talk/special_needs/4303826-Primary-school-auties-summer-and-the-new-academic-year-thread-7

Thread 6
https://www.mumsnet.com/talk/special_needs/4166833-Primary-school-auties-spring-2021-and-beyond-thread-6

Thread 5
https://www.mumsnet.com/talk/special_needs/3953023-Primary-school-auties-summer-and-beyond-thread-5?page=36&reply=104240251

Thread 4
https://www.mumsnet.com/talk/special_needs/3748449-Primary-school-Auties-into-2020-thread-4

Thread 3
https://www.mumsnet.com/talk/special_needs/3628263-Auties-transition-to-Year-1-thread-3

Thread 2
https://www.mumsnet.com/talk/special_needs/3451020-Reception-auties-2018-19-thread-2

Thread 1
https://www.mumsnet.com/talk/special_needs/3080753-DS-with-ASD-starting-school-Sept-2018-I-am-feeling-overwhelmed

I’m not sure, I would hope that would be part of it. They don’t necessarily need to use the zones terminology though they can.

We don’t tend to use the zones words at home, until fairly recently (and it’s still quite fledgling) ds has been very resistant to discussing emotions. I probably manage it more intuitively when I can. Now he’s getting older, and hopefully more willing, I need to be more proactive in helping him self regulate, or giving him the tools to anyway.

Calming things in yellow zone to get back to green for us tend to be things like sensory stuff, trampoline, running outside, sensory swing, yoga ball, weighted blanket.

DD has some calming exercises the OT taught her but she needs to be doing them before she gets to yellow or she's too far gone. We try to build them into the day anyway but she can be a bit resistant and school don't have anyone to do them with her as her 1 to 1 hasn't started yet (she only got the ehcp just before half term).

I just had a meeting with someone from the LA's family hub and they are going to do some 1:1 work with DS each week on emotional regulation so we'll see how that goes....

Open I would say that my DS is still not able to recognise if/when he needs to use the strategies. I was trying to think how you could break that into smaller steps but couldn't really think how. DS is better able to recognise now when environments are too challenging for him and asks to leave. That is big progress for us the only problem is that we can't always leave - for example the dentists waiting room.

dimples I would expect the OT to work on breaking it down with him. Obviously equipment and access will be different at school to what we might do at home.

I guess I was (not very clearly) asking for ideas of other areas the OT could work on rather than ideas for calming activities. Especially considering things like handwriting are supposed to be covered in the classroom.

Great ds is going to get some support. Will that be at school?

Also, some of the triggers at school will be different to at home.

Hello everyone, can I join in? I've lurked these threads for ages but never posted.

My DS is 4, diagnosed ASD and non-verbal. I think he's probably quite a bit younger than most of the other children mentioned in this thread as he's just started mainstream school in Sept and it has gone spectacularly badly. He's now down to just 2 hours a day which he violently protests every day, to the point I carry him in there mid screaming meltdown, and I'm just feeling very down and overwhelmed by it all. There is no provision at all for him at school, just the regular TA and teacher when he attends. His EHCP is in the draft stage and has been rejected by the school. At the moment I'm having to stay at the school to calm him down for up to an hour.

They have a temporary SENCO who actively avoids me and never calls back, I can never seem to get a hold of our local SENDIASS as they've got restricted hours and don't seem to answer emails, our case worker in the LA never answers her phone or returns my calls or voicemails. I've tried various disabled childrens charities and again no one answers. I feel like I'm banging my head against a brick wall every day. I don't know any other special needs parents to talk to about any of this so I feel alone with it all. My mother keeps telling me I'm not doing enough and is under the impression that all I need to do is email my local MP and it will all be sorted....

Is this the typical experience of getting SEN children into school or am I doing something wrong?

@carriebradshawwithlessshoes it’s very difficult isn’t it, there is the pressure to do whatever we can to help our kids which can come from ourselves and everywhere (including in your case your DH), balancing with also enjoying our kids as they are and the communication they have.

I will never, ever know really, but my DS didn’t have functional speech and I was able to be at home with him for a while and he did gain a lot of speech. So I don’t know whether it’s what we did together or he might have found his own way. But DS could form words, kind of, he said a few words so that was a huge advantage. He also had some echolalia, also a huge advantage for speech. I was also very lucky in that I could be at home for a while, but it really took it out of me.

Your DH could do this though, it seems unfair this is all on your shoulders?

I just did very simple things - and mostly I became a lot more patient, and responsive to DS. A lot of non verbal interaction/communication. And I also paired very simple sounds to things he liked, which was actually much more difficult than I thought it would be. I didn’t use PECs or any particular method, but I did find the Hanen books really useful. And I watched and read loads. DS still does find language difficult, but at least he can understand it. I realised that he didn’t understand any language at all aged 4 - so even if I’d tried to use AAC it wouldn’t have worked. A lot was just playing with DS, and keeping everything low stress.

A friend of mine has a child who also didn’t use language and he is a teenager now, she was very dedicated and he had great speech therapists etc. More than I did but his speech didn’t come. He does understand quite a bit of speech though so he can use AACs. I wish we knew more about this area. Please don’t beat yourself up, it looks like you’ve tried quite a bit like my friend did.

@LittleCoffeePot I feel for you, my DS was not verbal at 4 but we waited for a specialist school, as he couldn’t even go to toddler groups so mainstream was completely out. There are some good facebook groups in local areas - they would be a potential support for you. I guess your choice is either be with him at school or take him home but fight for what you think he needs through the EHCP. Not an easy choice. What do you feel would be best? Another option is to visit a couple of local specialist schools - just contact them yourself and don’t wait for the SENCO or EHCP - they can often advise. Email or phone admissions and see if they have the potential for your child, and then arrange a visit or conversation. Sometimes if they feel that your child is suitable they can help with EHCP process by offering you a place.

Oh and contact your local SENDIASS @LittleCoffeePot

Open the sessions will be at home but the guy (I am not sure what his qualifications are) will be observing DS at school. He is meeting both DC next week so for once there is no hanging about! I was just looking at DS's last OT update. The other targets they mentioned are bilateral integration (aiming for more consistency in using hands together eg ball bounces and on scooterboard), balance, tolerating prone position, sequence and organisation (struggling to organise body for commando crawls) and grading of pressure and force (DS applies heavy pressure when not needed- my arms certainly know about that).

Littlecoffeepot that sounds tough. Unfortunately I have found chasing profs needs to be done in writing and it's only when I formally complain that I can get the LA to act. Might be worth calling the IPSEA helpline to chat things through

@LittleCoffeePot why are school rejecting the EHCP? Can I ask why you didn’t look at SS, did nursery or wherever he was prior not suggest getting the EHCP in place? I can only comment on our situation. Yes, the external people are CRAP. I did end up with a name of someone at the LA who was dealing with DSs case (when he was in MS) and I harassed him to death, I was the bane of his life and had his direct number. That was with a view to getting DS moved on. I’m surprised school are not forthcoming tho as with DS they were desperate to get him out. They didn’t want him there as he presented, he was just causing them grief.

may not help but I would approach the Head if you can, they cannot possibly argue they are meeting need. I would get a name and direct number/ email of the LA caseworker and harrass them to death. I would also be viewing every SS you can and seeing if they can get behind you. They may take DS for a trial few hours, our caseworker said once they have done that and can relate your DS to their school the SS are more likely to want to help. Get a contact name of the person at the SS. Flatter or do whatever it takes to get them behind you.

LittleCoffeePot why have school rejected the EHCP? Did they think it didn’t include enough provision or some other reason?

I would ask to see the head teacher re. lack of engagement from school, and head of children’s services re. lack of engagement from LA.

School need to support the EHCP process and get the specialist teaching team in to help him settle in to school. Who assessed him for the EHCP?

Do you want him to stay in MS?

I meant email or call director of children’s services.

dimples I hope this guy can help.

Me too Open, he seemed kind and not fazed by my explanation of DS's behaviours. We have a busy week next week, OT at clinic, support worker on Tuesday and epilepsy appointment at hospital on Wednesday and it's a busy week at work plus I am working next Saturday at an open day. A quiet weekend here, I hope ...

DS is a member of his school choir and goes to practice on Thursdays. The teacher who leads the choir posted an audio recording of the choir singing a song for Remembrance day on the school's Facebook page. I played it to DS and his face lit up, he said is that us and was v happy when I said yes. Then after a bit he said I wasn't singing. I said, oh, that's a shame, didn't you want to join in. And he said he had but that Mrs ×××× had told him to stand by her and not sing. That made me want to cry. Obviously, I don't know what lead up to that. DS can sing beautifully but as you know is not very good at following directions.

The DC had their flu vaccines today. In past years DS really struggled with it but was apparently fine today. He has however, been all over the place with me today and is currently still awake making weird noises and running around his room which is v unlike him. I have decided to leave him to it for a bit.

No doubt some ms places are better than others but I don’t think there is an awful lot of tolerance to ND children in ms in my experience. I think I’ve said before I have a friend with a child who is (you may say) HF ASD in the ms school where DD and DS went. DD was talking the other day and said it was awful as everyone was horrible to him and picked on him. I said oh you mean the kids DD? She said no the teachers. I said which ones (knowing all of them of course? ) Surely not mr x or Mrs y (always super sweet with DD). DD said all of them and yes including them also.

also makes me think DS really stood no chance there!

are you going to ask about the choir incident dimples?

I guess 'good' means different things for different types of SEN. One kid might find busy classroom walls, rule-breaking and noisy corridors overwhelming and thrive in a super strict school; another might need a lot of movement and noise and do better in a school with a big playing field and a climbing wall; another might need quiet spaces to decompress so library, chess club at lunch time and sensory room might be key; another might be creative and love performing and thrive with a school with a drama focus; another again might be much happier with lots of maths, or a D&D club.

I suppose what I mean is that it seems like schools just shove kids into a small number of SEN buckets and if you don't fit then screw you.

What I've found is that in our special school, the main difference is that they are very nurturing. Their approach is bespoke to each child and, due to the high number of adults and low numbers of kids, they have the time and space to really get to know the kids. My DS needs quiet spaces and movement etc but because they know him well, they can work with him and get to know his triggers and regulation strategies etc.

Whereas in mainstream, they tried to discipline him like a NT child, and it was disastrous as he got fixated on being 'bad' like a super villain. Their time outs etc didntnwork as he was too young to link action and consequences and he just had lots of very hyper meltdowns. No awareness of pda or strategies to help him. Assuming that he was able to control his behaviour when honestly he was so overwhelmed and disregulated that he just couldn't. Much more staff training and empathy were needed. Adults villifying a 5 year old wasn't pretty especially when other parents joined in.

I do like the model of having schools which can fit different needs, as I find that mainstream is really difficult for many kids with SEN as the whole structure is set for those without SEN. But then I find special schools imho can then be pressured to take a wide range of needs, and end up not being as good as they could if they could be clearer and more boundaried. It’s like both mainstream and special schools are pressured to be able to support with every SEN. You really can’t be tailored to each kid if the whole school is run to be broad.

With my DS his special school has been a lifeline, as no way could he have stepped into a mainstream classroom. He needed a low demand, small nurturing setting which that did give. There are only a few in each class, with a high ratio of adults, a lovely sensory room and the classroom is set up with nice little ‘chill’ areas, areas for OT, small desks and play corners. The staff are so nice too. However because they have even in that small class, kids who are non verbal to completely verbal, kids who are able academically to kids who struggle with the basics, kids with lots of emotional disregulation and kids who have none - they do their best to be ‘individual’ but it’s just too hard when there are so many different needs. My DS is nurtured, his language helped by others who could talk in some ways, but he gets very little learning eg maths/English, and doesn’t engage with a lot of activities because some of the kids who need to be louder are too much for him and he withdraws.

@ElizabethBennetsBoots yes it’s very frustrating - but I do think most teachers in mainstream are struggling as it is and just don’t have the skills and insight. My DS is very demand avoidant and even in his special school I have to ‘train’ every new teacher he’s had on how to support/work with him.

@ToastMarmalade too true.
I have little sympathy for ms teachers though I'm afraid. I know some of them do try but they're in the minority. I got fed the line so much 'but we have to think of the other children' ... I'm afraid that cuts little ice with me as its my child who is my priority and deserves an education from a qualified teacher (not a totally new to education ta).
Anyway, I will not rant, but I made a new year resolution to speak out more on things and so here it is. I find that my DS does access learning in his sen school because he is generally more regulated or they have the strategies to help him regulate, and the staff ratios mean he can have differentiated work etc. He does a lot of his academic stuff while on a yoga ball apparently and they're fine with things like that.
How is everyone else doing? We are getting ready for another week here. Just made the first stage of the mincemeat and DS enjoyed helping a lot. I got an interview for the job I went for but I don't know if I'm mad to consider full time work. Although this would be remote but still!!