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

Hey!! My little girl uses echolalia and GLP, she's under salt only because she's ready now to approach the social communication side. She started off just like your little girl!! She has her own phrases for many of things (jargon), I can have back and forth conversations but they don't really have much context nor stay in context. I think it's a really good sign your daughter is coming on with her speech. I model phrases to her, because that's how they learn language!

So perhaps for example when she wants 'juice' you can say back to her "I would like more juice!" Or "I'm thirsty!". Model phrases in which she can use which fits the context. There's lots of fb groups and instagram accounts with advice around GLP. Sending love!

Hi @katiewil welcome! It's a lot to process isn't it, my DS was diagnosed at the same age. Be gentle with yourself.
Hi @oliviaxxx my DS presented very similarly in his speech and we modelled language back to him just like this. It worked well, I think. He doesn't stop talking now! But still needs help with conversational cues etc.
We are well, I'm back at work this week and DS is back on Thurs to a new teacher and a new class, so we are all a bit anxious! We had such a great summer too, feel a bit sad that it's done for another year. Still, onwards to the Oct half term!

Thankyou! This is all new to me so I didn't know it was gestalt language until I've read up on it! Exactly like her! She is obsessed with learning, can read most words (she remembers things after being told once) and can count and name all sorts of shapes too.. she just will not converse.. like for instance if she has hurt herself she will say a phrase from bluey.. if she needs a wee she will sing the song we've made up for that.. I can completely understand what she wants because we've adapted to her language needs.. and she is a happy loving little girl.. now I've had a few days to process and research I feel more prepared!

Thankyou for the reply!

Thankyou! It's lovely to know I can come here for support from other parents who are in similar situations

@katiewil yes that's the one! My dd is only 3 but she is very clever with her words. Just can't use them within context, and the same with conversational ques, I have to help her a lot bless her.
But she has come on leaps and bounds. She's due to start a SALT course.

So yous also have what is called jargon, your LO uses her own 'language' & 'phrases' to speak, only you or her immediate care givers will understand what she means. It's really clever in how their little brains work 🫶🏽

There's a lot of gestalt language Facebook groups as well which are good.

Yeah modelling language really helps! It just adds more phrases which they can learn to use in context which is how they learn, so we need to accommodate!🫶🏽

Wish your DS loads of luck and sending positive vibes for Thursday, Iet us know how he gets on with his first day back. I agree, I love the 6 weeks and all the memory making 🥺🫶🏽

How is back-to-school going for everyone? Slightly better than expected here - the bar was low!

Glad it's gone well so far @openupmyeagereyes !!

We are doing ok ish. Pretty bad week for sleep (1-530 awake last night .. although that was the worst night). I've been ill with a bad cold, generally run down. Had another school viewing today. We liked it a lot. Swimming pool which DD would love and just generally a good feel. They have a sort of feeder class where the DCs have less demands on them and a bit more playing than lessons, to see if it works out. I think about 2/3 of that class progress in the school and the rest do end up going to the care type place (or equivalent) that we viewed. We would like DD to have the chance to at least try this route and see. For that to go ahead they have to review her reports / from current place etc and determine that she's a fit - parents' view has a bearing but definitely not a choice as such. The latest reports from current place (this month) are not very positive, I think they are kinda making a paper trail knowing we are focused on the next step. But e.g. they wrote she can't be in a group of more than 6 children. Indeed currently she's with 4/5, but 6 just seems pretty arbitrary. Not like it's been tried. So we will see. A meeting with them in a couple weeks and I think we will get more of a sense of how far we can push the system.

Ahna that sounds good. Are there other places for you to see too?

I wouldn’t say it’s gone well just that it could have been worse! As I said, the bar is low…

Ours has been OK...new teacher and although notes have been shared, so far lots of strategies that we had in place to help regulate DS and keep his self esteem high have not transferred over...so have had a chat with teacher and they're going to try some of the things he used to have in place for next week.
DS just getting used to all the new things. I'm back at work and shattered already. Seven weeks and counting!!

Only back on Wednesday (DD) and Thursday (DS) and already feel frazzled!

So yesterday was DS's first day of special school, secondary and taxi. Not off to the smoothest starts when taxi was 20 mins late which meant both DC were late for school. Whilst we were waiting for the taxi DS was v agitated, bit DD and hit me. He slept from 5pm-6:30pm - I woke him as he was in my bed with no pull ups. However, this morning was better and he went off quite happily.

However, I now have a logistical nightmare as DS is last pick up/first drop off. Fine in the mornings (if on time). They have dropped him off at 3:30 today and yesterday but I haven't got back with DD until 3:40. My Mum has been here the same 2 days but that's not sustainable every day (especially as she collects my DSis's children x2 a week). I asked taxi driver if we could change drop off order, however, the other three children in the taxi all live in the same village and you drive past the end of our street yo get to and from school to their village.

In other news I have got on the CAMHS course they say I have to do before a meds appointment will be scheduled. Fortunately the 6-8 week course has been condensed to a single day. V pleased to be one step closer but the letter really aggravated me. I will try and post below and you can see if AIBU.

The rest of the letter wound me up too. I know it's just generic but I have been trying to get help for so long and it's not like just being diagnosed with epilepsy or diabetes - I have been parenting a child with ADHD for 10 years.

Gosh @dimples76 yesh seems like such a clumsy approach re the mandatory course. Patronising and lack of empathy in the tone.

frustrating re taxi. We had similar when DD was using the bus, it could take ages soMe times and she had no patience, it triggered meltdowns without fail and we stopped. Hope it does work out better for you going forward. I guess too soon to say how the school itself is going for him?

@openupmyeagereyes yes over optimistic reading from me sorry!! And yes we have viewed other places but most haven’t been goers. There’s only a couple of real options I think and the one today seemed slightly better placed because of the feeder type class (and the pool!) and also bc they don’t have a long waiting list right now which could work well.

@LydiaWickhamsBonnet sounds like a difficult teething period, I guess maybe will become easier when DS and teacher form more of a click?

Back to school when reasonable well for us, but starting on a Monday didn't help with easing in! A few wobbled on Wednesday as DD's 1 to 1 was off sick. School did actually provide someone else for once, but it ended up being 3 different people and DD isn't great with people she doesn't know at the best of times.

Justploddingonandon that sounds like a tough first week back.

Ahna that school does sound promising.

Open glad that your low expectations were exceeded!

Think things have gone okay for DS at school. He hasn't said much and zero communication from school.

Well I’ve celebrated having both back at school by heading for a solo shopping spree. I find I’m torn between what I want to buy and what I know I will wear! My former life wardrobe was very different and sometimes I think I’m still there! Anyway it was very enjoyable so now I just need to wear my purchases!!! What are you all doing tomorrow eve??? 💃👠👠🍷🍾??

Open I’m glad it was ok, low expectations can not be exceeded so that’s good! Dimples, logistics sound tricky, you can only do what you can do?? Sounds like DDs school are going to have to be a bit flexible? Others must have this?? Lydia, yes, hopefully the teacher will grasp this, just a shaky handover maybe? Ahna, sounds promising!!! Is there not a date when when she needs to move? Like here, a ‘school start’ date, whatever a ‘school’ is? I didn’t know she didn’t go on the bus any more, I know we chatted about that at the time.

all fine here tho DS doesn’t mind school so that’s ok. He has though so far come home covered in green paint 2 days which annoys me, he’s not in bloody playgroup 😡. 2 days in and I’m wound up already!!

anyway, it’s the weekend….

@carriebradshawwithlessshoes shopping spree sounds amazing!! If we were closer, it'd be great to waltz the night away in some lovely jazz bar or similar!
Instead I'm trying to get DS to brush his teeth!
Booked a little cottage for a fee nights away after Xmas so that's something to look forward to. Aren't the nights getting dark so quickly?! Pitch black here already!

Few nights, I mean!

dimples how is ds doing?

I hope things are going ok for everyone. Ds is doing significantly better this week thank goodness.

That's good Open.

I hope you did get some very indulgent/impractical stuff on your shopping trip Carrie.

Managed to find a sort of fix to my logistical probs with the taxi. DS is now being dropped off at my Mum's. Not ideal as it's another transition for DS and an extra job for me, but it is a cheap, reliable method.

DS still hasn't said much about school. He is still exhausted from it. Yesterday I had a call from one of the TAs in his class. I think that he is presenting very anxious to them - pulling his hair out and chewing his fingers. She said that he always has her or the other TA sitting next to him. He is joining in quite well but keeps 'telling off' other children which (understandably) winds them up. We had a good chat and she had a very positive attitude to improving things. It did make me think that DS is likely to get hit one day, especially as he is such a titch.

So, I felt a bit emotional last night but also reflecting that DS's behaviour has mostly been better this week (if we skim over DS kicking DD in the face yesterday evening).

That’s good news open!

@dimples76 just to say I think it is very normal for an adjustment period! DD started secondary last year, the only one from her school and it was a huge transition. In fact I felt took a good chunk of the year! So I think he’s doing really well from what you say and the teacher sounds nice.

Totally agree Carrie massive change and it's only been a week (even if it feels like longer!) He was pretty excited about today as they have a tuck shop - I just hope that he doesn't lose the money I gave him before he has a chance to spend it.

Yes, big transition for him dimples, bless him. Glad you got the transport sorted. Is there any progress with CAMHS?

Open I am waiting for the LD nurse to meet with a colleague to review her notes from the 2 weeks of daily check ins. She is also going to observe DS at school. Then, they will report back - not sure if that will be parenting advice, more training, interventions for DS or what.

In the meantime I have the 'Parent Factor' course a week on Saturday and then after that they should arrange the ADHD meds appointment...

After his first full week at the new school, he did seem happy today. So that is good.

@dimples76 i keep meaning to ask you, has DS been weaned off his epilim yet? I know you said it was planned for the summer??