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

The LA have agreed that DD will be seen by an ED psych but no appointment yet made. They only conceded two weeks ago.

I have a day off on Thursday. I will call around to visit some

Mummytodo definitely, a good idea to take a look. I think as your DD is being assessed the special will normally be open to a visit. Is she getting much 1:1 or small group support. My DD is in Reception and is in a number of interventions for phonics, mark making etc

@dimples76 yes she gets 1-2-1 most of the day including lunches as 1, wouldn't know what to do in order to get lunch or be able to ask for it but also she runs round. She also starts school a little later and finishes early as she has meltdowns with the amount of people. The amended times help her alot she runs into school now.

I think my concern is with Sen school is other children have behaviours and I don't want her to get hurt and not be able to tell or show anyone. She has recently been quite badly bitten at school and no one saw it and she didn't voice distress I also wouldn't like her to be with lots of other non verbal children as how will she learn language?

Catching up… lots to say to you all so sorry if I’ve missed anyone here…

@Ahna65 where are you at with the sleep meds? Appreciate not the be all and end all but everything is worse with bad nights. I agree with Open re couples counselling, would you look into it? I actually don’t think therapy is a bad thing in general terms, I may be getting this wrong but did you say you have some sessions with the new job (as a job benefit I mean). Have you started yet??

@ElizabethBennetsBoots congrats on the job offer, that’s a huge morale boost even if it’s not for you. Well done. Re DS I’m not sure what to say, I guess kids do say these things, I’m not sure of the best response. How is DH playing it, will you talk to him later?? DS I mean not DH 🙄.

@dimples76 I am sure they have heard a lot of similar comments before, this must be run of the mill for them in terms of questions and responses. The multiple pj change sounds stressful, is he in bed yet? Hopefully so and you are getting some downtime.

@Mummytodo i started reading your comments and after every sentence was mentally thinking yes… and yes… and yes… and yes… re my own DS. Been exactly there and have the t shirt. Not sure if you have read my long and winding story on here which I drive everyone mad with I’m sure at every bump. I wont go into it all here again and the cliche is true, every child is different but in my case and in (huge) summary… yes DS is bright, yes he can learn but learns differently (not being talked at… yes, absolutely). Did ms want to cater for that? No. Could they cater for that difference in terms of their tolerance and skill set? No. Did they want to try? Bloody hell no. Did I want my child there in those circs? When they didn’t want him? No of course not. In terms of alternatives, the independent type schools you mention only wanted imo the HF speaking verbally skilled fully toilet trained child that DS isn’t. So that was an absolute no. So SS was the only option because no MS would cater for those sensory and learning differences and the profile of the child who goes to affiliated unit or independent school wasn’t that of DS. Am I happy now with the SS? No not really. But what gets me through the days is you can’t look at GCSEs etc when she’s only 4, you can only look at what she needs right now (good advice from Open). Research shows ND children don’t pick up language from NT peers. She should in a SS be placed in a cohort of similar children and they will try and nurture her and treat her as an individual. And it’s probably her best chance at this exact moment in time just as it’s my DSs best chance as much as it’s not what I wanted. And, in all honesty with my DS, they were the only place which would unconditionally take him for the aforementioned reasons. That is a thoroughly crap final statement to make in support of his SS but it’s a big one in our case.

Re her being injured again, I can only speak from our experience, the class should be staffed to such a high ratio that shouldn’t happen. Other kids do have behaviours, yes, those are not behaviours dS exhibits but his profile is such that there’s nowhere else for him (at present). The hope is of course that with the ss skills and a quieter learning environment he may be able to move on in due course, I’m not saying ms, but beyond here. Left in ms with their offerings that was never going to happen.

@carriebradshawwithlessshoes could you tag me in your story I will read through. It will make my world feel a little less lonely.

How old is your son? How is he getting on I just wanna jack it all in and create my own mini Sen school for these babies that don't quite fit right

Have you considered eotas?

Thank you everyone for your comments and advice

@carriebradshawwithlessshoes I did also think perhaps as she would be starting young maybe she will develop and in later years move somewhere... I was advised Holbrook school for autism Derbyshire. Tbh I'm just petrified for her future

@Mummytodo im useless with IT, can I tag you to my posts, I don’t know (anyone??!!!). DS is 8. We have ups and downs, it is potentially the best of limited options.

yes I have considered EOTAS.., always in the back of my mind but for now I’m giving it a chance.

Hi, I hope you don't mind my posting. My first posts about SEN on Mumsnet were back in 2004 when my oldest daughter was diagnosed with autism. I also have a 14 year old on the spectrum. And now I'm looking at my nearly 4 year old and thinking that she is too.

The problem is that autistic siblings can be as different from one another as they are from NT siblings.

I think that dd4 probably has PDA as well as being on the spectrum.

Well we talked it through and he's asleep nless him. Some things were moved around at school due to IT issues and the changes have hoset him. He told me he felt powerless when I told him to get out the bath and didn't mean to say hit, but meant to say splash me, and then he sighed and said he was messing up and he was sorry. I was quite amazed at how he could vocalise all that so we chatted about how everyone feels overcome sometimes and other things he could have said, e.g. I'll splash less, mum. He's nearly ready for a break from school demands I think!
Re: sen schools, its the only.place where DS has ever been included etc and frankly he's still getting over the emotional trauma of mainstream. I wish we'd moved him sooner.

@carriebradshawwithlessshoes thank you I will try and find them. I don't find Mumsnet the most user friendly haha. But I really appreciate your comments so far. I feel I will be in the same boat with limited choice.

I myself am not diagnosed autistic but I probably am. I had a terrible time at secondary school and was rarely there. I failed pretty much everything however in my early 20s I did go and resit my GCSEs and go onto college then university perhaps it will be similar for our little ones maybe school is just not for them or these types of schools aren't

Myopicbunny all 3 of my sister's children are diagnosed with autism and they are so different to each other.

ElizabethBennett'sBoots that's great that you were able to talk through the problem like that.

Carrie I think that you were so busy supporting everyone else that you didn't say how things are with you. Have you spoken to the Ed Psych yet?

@dimples76 things are ok atm thanks. DS calm and compliant. I’ve been trialling a magnesium supplement with him which may or may not be assisting. School reported last week he had done some really good maths which amazed me. Not that he can do it but the fact he did it at school.

EP ‘observation’ as they are now calling it pencilled in for the 8th.

Mummytodo my own view (and it’s only that) it’s best to focus on what she needs in the short and medium term as a good foundation will set her up for a better future. It’s possible to move schools later and SSs do often offer some GCSE’s
in any case. If you find a good, nurturing ms school that can often be enough for some, but for many it’s overwhelming even if they are academically able. Visit more schools then you will get a sense of what options you have, even if you do have a fight on your hands.

carrie great that ds is more settled, is this the case at school too?

Elizabeth great that ds was able to reflect on his behaviour and repair.

MyopicBunny welcome back on the merry-go-round. Have you spoken to anyone about your concerns?

Dh and I have talked a few times about the fact that ds might just do things like exams later. Learning doesn’t just stop at 16/18 does it?

Dimples have you heard anything more about your phonecall. That must have been stressful!

Open totally agree, learning doesn't stop at school and exams can be done at any age.

Elizabeth that's so positive about your ds reflecting on what he said.

Carrie great ds is showing what he can do at school, really positive step.

Hi myopic and mummytodo.

Thank you @openupmyeagereyes I private salt today and they essentially said the same. Sad DD need OT then salt sessions to build foundations then work on the rest. Also started ados screen

Liv he messaged me earlier asking if he could pop around next week to discuss 'other support which might be appropriate' for DS. So it will be interesting to hear what he thinks.

I spoke to my GP today and she has prescribed antidepressants. She was really lovely and I feel better for asking for help.

Danni how are you?

I heard a guy called Scott Barry Kaufman on a podcast today. He’s written a few books but this one sounds interesting. I think I’m
going to put it on my reading list for 2024:

”In Ungifted, cognitive psychologist Scott Barry Kaufman who was relegated to special education as a child sets out to show that the way we interpret traditional metrics of intelligence is misguided. Kaufman explores the latest research in genetics and neuroscience, as well as evolutionary, developmental, social, positive, and cognitive psychology, to challenge the conventional wisdom about the childhood predictors of adult success. He reveals that there are many paths to greatness, and argues for a more holistic approach to achievement that takes into account each young person's personal goals, individual psychology, and developmental trajectory. In so doing, he increases our appreciation for the intelligence and diverse strengths of prodigies, savants, and late bloomers, as well as those with dyslexia, autism, schizophrenia, and ADHD.

Combining original research, anecdotes, and a singular compassion, Ungifted proves that anyone even those without readily observable gifts at any single moment in time can become great.”

Whoops, the strikeouts are not meant to be there, just dashes.

liv is ds back on transport yet?

dimples glad the doctor was kind, i hope the AD’s help. Did she say how long before you can expect them to kick in?

Dimples maybe it will be helpful and open up some new avenues for support. Glad the doctor was nice and well done for asking for help, it's so easy to sweep your own mental health under the carpet.

Open that sounds interesting.
Ds is still not back on transport but the pastoral lead is going to do some work with him this week, so we'll see if that makes any difference. Even just one way on the bus would be helpful at the moment.

Ooo on my reading list too Open. Dimples I’m glad you have got those.

funny story from us. DS got up at 3am, needed wee. DD sleeps with these ridiculous fairy lights around her bed. I’d nodded back off but DS for reasons known only to him had got back up, seen (I assume) DDs twinkling lights and thought it looked a better offer. She was fast asleep and he got in bed with her… cue major screaming from her (thought she was being attacked he climbed on top of her), shock then yelling from him, Dh and I were like ffs!!!!!

Thanks everyone! I have a meeting with the nursery manager on Friday. I am sure my dd has PDA. I've been trying some PDA strategies which have seemed to cut down meltdowns considerably.

Oh dear carrie, I hope everyone got back to sleep.

Out of interest can any tell me what play therapy is? And would it come from an OT?

Play therapy is not done by OT. It’s akin to talking therapy for adults. It helps support children who have suffered from trauma, anxiety, that sort of thing. Children naturally explore and work through their feelings during play and a trained therapist supports them with this.