Thread 14 - Autism and any other SEN

[dimples76]

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

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

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

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

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

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

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

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

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

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

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

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

Welcome @AllGonePeteTong1
Unfortunately I can't help with your sock query. I wonder though if the compression socks might create more space between the sock and shoe though which she might not like. Maybe it's about finding shoes that can be laced tightly (that's if she can tie laces - my DS can't)

How is everyone? DS's improved behaviour continues. I don't want to jinx things but it does feel like we have really turned a corner. He got a prize today at school for the most dojo points in his class. The TA just sent me a pic of him with his certificate looking very proud and happy. I had a little cry.

dimples that’s fantastic. Well done to ds 👏🏻

Welcome AllGone. I’m no help either I’m afraid as it’s not been a problem for us.

Ds has had a pretty good week. He’s very reluctant to get ready in the mornings as he finds the transition hard because he’s not particularly keen on school but once there generally ok.

How is everyone?

How is your DS about going into school the moment, @Open?

I was at DS's school yesterday and the head was saying that between now and December they have 63 Tribunal hearings for parents fighting for a place. The school has about capacity for 250 pupils and currently has 290, plus of course places have been offered for Reception and yr7. He has been consulted about 400 pupils this year! The whole system feels broken.

Sadly DS's improved behaviour was rather shortlived- ot us not at its worst though and at least the physical violence has reduced.

Dimples, good to hear from you but sorry to hear that. Bit of an odd update here… long story short we had DS tested for a few things and his markers have come back as v positive for PANDAS. Lots of inflammation, immune dysfunction etc. Anyone at all familiar?? Meds prescribed but unsure how much of the picture this is for him?

@Carrie was that through a blood test? I have always ruled it out for DS as there was no sudden onset (he lacked tone as a baby, head lag etc) and also his traits seem to be part of his genetic inheritance from his BF. However, where there isn't a pattern of neurodiversity in a family it seems to make sense as something to explore. Obviously it is not something that I know much about. Let us know how he gets on with the meds - I know if it was me in your shoes that I would be struggling to control my hopes for an improvement.

Yes, blood tests dimples looking at specific things. DS was v different after his glue ear but he was so young then it wasn’t like he had loads of skills before as that kicked off at 11 months. . He was a late walker but then so was DD. Yes I’ll let you all know.

Off to see Bridget jones tonight with dd. Anyone seen it? SIL claims she cried throughout which is not what I need….!

very intrigued by this @carriebradshawwithlessshoes do keep us updated. You’re prompting me to read up on it.

@dimples76 thats so sad to think of all the kids and families behind those numbers and to think it’s likely multiplied at every SEN school. You’re right re the system.

we are doing ok, not a good sleep week but the improving weather helps a lot. A couple of appointments coming up next couple weeks so will probably have more updates then.

@Ahna65 are the appointments looking at anything particular? I know we talked about FRAT… is it that or anything else??

And yes @Ahna65 I did think about you with this latest development…

Good luck with the appointments @Ahna65

Hello everyone! Posting as id love to join.

DS is just turned 5. Diagnosed with autism (with a heavy dose of demand avoidance), dyspraxia and likely high IQ 6 months ago. Starting pre school at 3.5 was utter hell which lead to all of the assessments. Thankfully, reception has been okay so far, largely thanks to his wonderful teacher and some additional social/communication support he has been having. He is progressing through the work with ease.

Life isn’t what I thought it would be. DH and I love doing things, but all DS can manage at evenings/weekends is Lego, sensory play and going for walks on his terms. We work quite long hours so the weekends are largely devoted to DS in order to fill his bucket. But it keeps him regulated and in school so that’s okay. We are permanently shattered as sleep is a big issue, but it’s manageable.

We have had a lot of OT involvement, both privately and NHS. We have forked out for a private EP to see him in school in the next couple of weeks which I hope will be useful. We haven’t gone down the road of an EHCPNA yet as he seems to be managing at school with their interventions and is manageable at home with low demand/high nurture environment. But we may reconsider that depending on what the EP says.

The grim statistics for school attendance for PDA terrify me so we are being extremely proactive.

Anyway hopefully thanks for having me 🙂

Hi all.

Welcome Squashbosh. Honestly I would be applying for an EHCP ASAP. Things can change quickly, not all TA’s and teachers will get your ds equally and if provision is not mandated it can be removed. As you say, PDA has a high correlation with school issues and I’d want to be on the front foot.

Interesting discussion re PANDAS. Is it a particular pathogen they test for carrie? What medication have the prescribed?

Ds had a better week last week after a more unsettled one the week before. Hopefully this one will be ok. Two weeks until the Easter holidays…

I seem to kill this thread when I post…

@openupmyeagereyes I’ve been meaning to reply actually. I was under the impression that, as DS is progressing very well academically and is very much manageable with quite simple support (small group social/communication a couple of times a week alongside some additional gross motor stuff) an EHCP would be rejected. I thought they were for need beyond what the school could provide? He’s really no bother at school, other than being quite emotional. The SENCO said she thought we’d get nowhere with it.

I mean, don’t get me wrong, if they could consider the impact school has on home life I’d be thrilled. But I doubt that will be the case? It almost feels with PDA/HFA that you need the wheels to fall off before anyone takes you seriously…

That's how I feel too sometimes @openupmyeagereyes!

I agree with your advice to @SquashBosh I would apply for an EHCP now. It can take a long time to get one in place and the Tribunal waits are very long at the moment.

Our hols are a bit out of sync with most areas so we still have 2 more weeks after this one til the end of term.

Tricky one with DS this evening. He announced that he wanted to invite Ethan (not his real name) from his class for a sleepover. I said that we would need to build up to a sleepover and we agreed that I would write a note to Logan's parents inviting him around for a play or to go and see the Minecraft movie together. After writing the note and putting it in DS's bag (with little hope that it will actually make it to the intended recipients) DS then announced that DS would not be giving the invite to Logan. He said it was because Logan had said mean things to another classmate ironically DS had just called me a big, fat loser. Now, I have no idea where we stand as DS did not want to discuss it further

Squash how is his behaviour at home? I’d expect it to be challenging if he’s got a PDA dx?

dimples sounds tricky! I have no experience of sleepovers as ds has never had one. A play date seems a sensible first option if ds changes his mind.

Very difficult. Phases at home seem to cycle between hyper/impulsive/destructive or flat/anxious/extremely tired (but no increase in sleep). We never get phases of calm. It’s close to impossible to hold a conversation with him. Everything is shut down with ‘silliness’ (either saying wee/pee over and over, making up a clearly ludicrous response or just making noise). It’s extremely difficult to leave the house. We usually go over to my in-laws on a Thursday night for tea but he just couldn’t leave the house tonight, he was too wired. Everything needs careful planning and so much preempting. We can’t do anything off schedule or ad hoc, he just wouldn’t cope. He needs adult engagement every single waking minute or he’s in bits. He’s not violent and doesn’t throw catastrophic meltdowns, but is negative and anxious about everything.

Meanwhile school see a highly strung child who needs some help managing friendship dynamics and needs a lot of predictability. But also a none disruptive, polite, well behaved child who is near the top of the class wrt maths and reading.

Its impossible. Thats why we were thinking an Ed Psych might be able to shed some light on what is actually going on at school.

Squash I think an EP would be beneficial, especially if they view it through what home life is like. It implies he finds school a lot harder than it seems and there may be ways of helping him that will improve things at home.

@openupmyeagereyes sorry I missed your question… yes based on inflammation and strep markers. We have the prescription now which consists of an anti biotic anti histimine and anti inflammatory. I’m tentatively hopeful but not holding my breath. I’ve said before DS can be hugely irritable which is linked to PANDAS. There can be only one thing worse than a nv child and that’s one having major meltdowns when you can’t verbally deal with it. Is he tired, is he hungry, is he thirsty etc. it’s torture. Anyway we will see.

carrie If he’s had strep surely you’d have noticed signs of infection at the time as he’d have been unwell. Has he ever had AB’s in the past?

Ds had tonsillitis at 2 but he was clearly unwell and had a course of AB’s.

I hope you see some benefits.

DS had severe glue eat as a young child and the cons thinks the strep may be related to that as the concept is that it then shows thereafter as a marker. Although the reasons as to why his tests show what they do isn’t really known. They do show that he has immune dysfunction and inflammation and strep. The dr said we don’t know exactly what goes into the box but we can see what comes out and the aim is to treat that. Although of course DS presentation may be nothing to do with having these blood markers of course.

dS lived on antibiotics for 3 years so yes he’s had before.

Good luck Carrie

It seems that DS has developed a genuine friendship. I have heard back from his friend's dad and we are arranging a park playdate. Thought that we'd start with that and see how it goes ....

DS refused to take his ADHD meds for the 2nd time this week. In general since school starting working on his home behaviours and he started these meds is behaviour has been far less challenging. Much less physical aggression, especially towards DD. I bought swings last Summer and the 2 of them (who have at last learnt how to swing) are spending ages out on the swings whenever it is dry. It makes me so happy. I will need to remember this tomorrow when DS starts calling me all the names under the sun!

That’s great dimples! Does he/ they try to stand on them? That is DSs party trick this year, he’s never done it before. Then he tries to stand on one leg. He’s gone flat on his face a few times. It’s not relaxing for me!! I’m torn between thinking there is some balance benefits and needing to reserve a permanent slot in our nearest a and e…!

Fortunately not @Carrie! Standing on one leg - I would be stressed too.