Auties transition to Year 1 - thread 3

[LightTripper]

This is the continuation of the thread for parents and carers of autistic children in reception year at school, going into Year 1 in the autumn. All welcome (also parents with older or younger children who want to ask questions or share their wisdom!)

Welcome!

dimples love the sound if your at home Halloween party! Might do something similar in the actual day.

Sorry, I just realised I've missed loads if messages. Will catch up later!

Hi all - lots of news!

Great about DS's reading band danni and the video made me laugh!

Harley totally agree with open re: the meeting. Sounds like the LA person and the Sendiass person were both good? And great that DS will have comfy clothes and not have to change etc.

Hope the appointment goes well Furry. I took a spreadsheet to mine because I am obsessive autistic very organised. Your DD sounds a lot like my DD when she was younger in some ways. Did you say you had the option of staying in a small independent school? That has worked very well so far for DD I think (20 in a class with a teacher and 2 TAs, and only 60 in the school and no "big kids" so it's all pretty calm). The only downside is her school only goes to 7 so we are already having to think about the next school. Trying to find something DS could go to as well, as DS will be starting reception the same year DD has to change school. Of course if Mr Corbyn gets in we might have to think again but I guess nothing would change immediately so hopefully we'd have a bit of time to get a new plan in place. Luckily DS seems quite resilient so hopefully he'll be happy in whatever setting works for DD.

Haven't really thought much about Christmas. DS wants a green car so that's quite easy . DD wants a Lego car that was an option for a friend's birthday present, so that's already in the back of my wardrobe ... but not sure what beyond that really. I was wondering about a kids camera, though I'm worried DS will fight her for it. Maybe we'll get him a toddler one as well and they can take pictures of each other?

furry sounds like she us in a small environment which suits her needs, can she stay where she is? If not a few trial days in mainstream might a good idea, just to compare with the smaller environment of the small independent setting she is in (hope I got that right).

DD was struggling at nursery/preschool when the small group she was in was increased to a massive group of 32 (change of management). Took me a while to figure out what had changed, she was so unhappy but couldn't tell me why. Once we knew and figured out it was the number of children and the busyness which upset her, I reduced her days so she only did the quieter days when the group was much smaller. I'm beginning to wonder if I've made the right decision sending her to our local primary (where she us now) as her anxiety levels are increasing by the week.

Harley greet that the Sendiass person was supportive and that you stood firm. The school trying to blame it on him is just absolutely awful. Fingers crossed things get moving for you.

We are now on day five of constant toilet trips your DD (for wee), took her to GP yesterday but was yet again given clear on UTI. GP did send a sample to the lab though, just in case. I am convinced it's down to anxiety though. Her teacher asked what she could do to help, apart from letting her go to the toilet as often as she wants to. I just don't know what to suggest or how to help DD. She seems happy about school and talks happily about the learning. But something is definitely causing her anxiety.

@LittleSwede I think, having read how other DC have found the bigger groups more difficult and how their anxiety levels go up, we’re in a position where she will stay at this little school as long as we can feasibly manage it. I know her dad (recently dx with autism, HF) has huge problems in school and that anxiety from then still remains a big factor in his current difficulties. I don’t want that for our girl and nor does he. We will have to make some big choices and changes to make it happen but I think we’re at that point where we kind of have to if we want her to build confidence and resilience and understanding so that she can cope with the big changes later on...I think, having seen how she is in bigger groups, she would just withdraw and become anxious all the time. Before she went to this school she was selectively mute at her childcare setting and would hide all the time. That was with three other children and two staff. Since being here she talks to other children , will join in on her terms, still hides and stresses with the whole socialising and understanding the ‘rules’ of engagement but in a more manageable way. The teachers and children are kind and let her do what she needs to and they are teaching her all the things she struggles with in a way that is right for her. I think the last 6 weeks have really brought to light how hard things are for her. Keeping her anxiety low and keeping a sameness to her days means she has the reserves to learn new things and cope when things are different. We have til mid January to enrol her in FT school so that’s enough time to iron out any niggles and doubts when flipping between MS/Inde school decision. Thanks for advice about taking notes on things to the meeting. I will take everything I have as I’m sure I’ll go as blank as a plank otherwise!

What else can i do. Working and supporting ds as he needs with his toileting means since i refused him into school he settled again and from last wendnesday till this morning he had 2 soiling accidents. Nothing else. Today first day back at school i sent in 3 pairs of boxes and 2 pairs of trousers just in case. They phoned me at 1pm for more clothes. I am so gutted for him.

Also sorry for delay in replying. Sendiass and LA person were brilliant i just hope things change. This morning at drop off i was meet with a wall of silence and ds was left stood in door way with his stuff till we walked across the yard then his TA came and got him. At this moment things feel worse.

Oh Harley sorry to hear that. That was v unprofessional of the school staff at drop off.

Bad news at our end as the LA have refused to issue an EHCP for my nephew but have approved top up funding. My sister and I both feel that the school SENCO who is v inexperienced is not very good at 'playing the game' with the costed provision. So despite the Ed Psych saying that DN needs a mix of 1:1 or 1:3 support with lots of sensory breaks and social skills interventions the total cost was £8,200 - how can that be right? When we had AR (same school) for DS in April the costings were about 16k but the original plan it was 22k. I asked if the SENCO if she thought DS needed less support in Yr1 than Reception and she said no but the council had changed how you detail the support. Feeling rather disheartened - staying at my sister's tonight so we can prepare for my other nephew's EHC assessment meeting tomorrow! I'm worried that we're going to lose our tempers/cry

or maybe some for Harley and Dimples (I'll join you with a glass too).

Sorry to hear things are worse Harley, the school doesn't sound like a warm and nurturing environment at all. Not what your DS needed on his first day back.

Sorry the LA isn't supporting your nephew with issuing an EHCP. I can't figure out how they worked out the money either! Our LA doesn't supply any money at all with EHCPs so maybe your LA is moving in this direction too. So frustrating!

DD totally surprised DH and myself with writing two letter word tonight, 'go', 'no' and 'so'. She's only written random letters in no particular order before and not really recognising what each letter sounded like at all, with the exception of the letter her name starts with. That was just a few weeks ago. How did this happen?!

)Third paragraph re nephew was for dimples)

Thanks Little and well done to your DD on the writing!

Light I’m glad the Christmas present list is straightforward in your house! We got ds one of the kiddizoom cameras last year. It’s robust and has lots of effects and games. Dh did buy a bigger memory card for it though as the one that comes with it was rubbish.

Little are the toilet trips all day or at specific times? I’ve no words of advice I’m afraid, it seems the likely cause is anxiety but tricky to get to the bottom of it. Amazing writing

Furry hopefully you can find the right environment for your dd. It’s great that your dh has insight into how your dd will be feeling.

Harley I’m sorry that the toileting has gone downhill again since ds has been back in school. What was discussed about this at the meeting?

Dimples I’m sorry about your nephew‘s EHCP refusal. Will you appeal? I hope today’s assessment goes well. Will your ds get the same support at school despite the funding change? It all seems quite arbitrary doesn’t it.

We are having a good week. Sleeping has settled back down for the last 5 days and he’s been waking around 5am. 5:30 today which was great. We have better talking and engagement again off the back of the regression.

I met with the school yesterday and it was all very positive. He’s adjusting better than they expected and is spending the majority of the day in the classroom. There are good days and bad days and the transition after the lunch break is a tricky one but so far, things are going in the right direction.

Last night ds actually asked to use the spelling app! The day before he’d won a ‘squeeble’ (a little monster) and he was super excited. So two days in a row he did all 10 words on the list. Last night he got many of them right but a couple he tries to spell phonetically. I’ve no idea how this will translate to more traditional written spelling but it feels good he’s doing something in this area.

By regression I meant sleeping. His speech had not regressed, it continues to improve.

Thanks @dimples76 and @LittleSwede.

@openupmyeagereyes at the meeting the school wouldn't go past saying that they wanted to know why he had regressed in there opinion and that he was fully toilet trained. Even after the LA person explained to them why he is how he is. The school are saying that they are following his toileting plan but from the paper i recieved and the state ds came home in and how sore he was they aren't. School are also saying that they don't normally support toileting without the incontinence nurse going in. Ds incontinence nurse has told school twice now that they only go in when they are doing something very unsual with a child as they don't have time to visit every child at school she has agreed to attend a meeting but isn't availabe till 18th November. Because of this the school are talking to the school nurse who is giving them the opposite advice to what the incontinence nurse is saying and is saying that ds doesn't suffer from with holding and constipation like the incontinence nurse says. The school are saying they have very little confidence at the bursary meeting today they will be allowed by governors to continue to pay for ds's ta as they can't afford it.

@Light i wish ds was easy at christmas he doesn't really ask for anything.

@Furry I hope you manage to find the correct enviroment for dd.

@Little i hope you manage to firgure something out with the toileting.

@Dimples sorry about your nephews ehcp. Appeal sounds like the best way forward. Hope todays meeting goes well.

@Open really glad you have had progress in your ds sleeping hope this continues.
The meeting at school sounds brilliant glad its all going so well.

Sorry if i have missed anything.

open that is great news re both school, sleep and spelling app! It's brilliant that he us spending most if the day in the classroom. The 5 or 5:30 am wake ups must make a difference for him too (and you!). Fingers crossed it continues

Re DD and her toilet trips, it seems to go on all day but we do have the odd hour here and there when she forgets to think about it and doesn't go. I read about something called Pollakiuria (spelling may not be correct) which is an anxiety based need to go to the toilet, often coinciding with changes in routine, such as starting school. Bingo! Advice seems to be to just let her go but try and distract her to make time between trips longer (or bladder will begin to shrink).

Wow so many messages!

Dimples that's so rubbish of you LA. Have they given you any indication that they are going to give you a draft?
Hope the meeting with your sister went ok. She must be so frustrated and exhausted by all this. The way they allocate funding sounds ludicrous as well. Hope that it all gets sorted out!

Danni your ds wanting to look at stairs made me laugh. Great about the reading!
Re Christmas glow in the dark puzzles are a massive hit with mine at the moment, so they will definitely be getting more.
I'm sorry you haven't got your draft back either! I don't think I'd be that bothered about it either but I need to change the placement to the new school and I can't do it without the draft.

Harley I'm sorry the school are behaving so badly still. I hope your ds had a better day today.

Furry it definitely sounds like dd needs smaller classes to cope. Good luck with the appointment.

Littleswede it does sound like an anxiety thing, especially if she wasn't doing it before.

Glad everything is going well open! Long may it continue.

Love ds's Christmas list light!

In other news the talk I went to on Saturday was great. Would definitely go to another one of her talks.

Also wanted to let you all know that I got a sunflower lanyard in my local Argos the other day (see the picture). Apparently they are also doing them in Sainsbury's and work in some airports too.

Ds has been up and down a bit recently. His 1:1 is leaving and being replace by two people (one doing 3 days and the other 2 days). Hopefully it won't be too distressing for him. But then again if he isn't it may be more proof that he needs special school. Every cloud has a silver lining!

Another lousy meeting re my older nephew. LA is refusing EHCP but will provide top up funding. We're going to see what the Enhanced Support Plan looks like and then decide whether or not to appeal. Some of the things that they say are ridiculous though. Apparently the teacher can give DN lots of 1:1 support including acting as a scribe, ensuring he has understood the instructions, facilitating sensory breaks, keeping an eye on his anxiety etc. all whilst supporting 29 other children and being the only adult in the classroom. This is where I feel that the school need to push back and say it is unviable but for some reason they just nod along while my sister, the Ed Psych and I expressed incredulity...

Yes, Open fortunately DS still gets the same level of support but the school gets less money

I am so frustrated with the LA and Council. Will definitely be having a drink later!

In better news whilst I was at school I had the opportunity to spy on DS going to lunch. He looked happy, chatty and quite sensible.

Open wanting to do and succeeding at spellings is amazing.

Liv hope that the change in 1:1 isn't too traumatic.

Dimples that is beyond rubbish, I'm so sorry. How on earth is the teacher supposed to give him that much support and how can the SENCO not see that it will be a problem?
Will they get you the enhanced support plan within the appeal time? I'd be tempted to go through the motions of appealing anyway so you are ready if you have to.

Apparently the teacher can give DN lots of 1:1 support including acting as a scribe, ensuring he has understood the instructions, facilitating sensory breaks, keeping an eye on his anxiety etc. all whilst supporting 29 other children and being the only adult in the classroom

This is ludicrous. I’m really sorry.

Thank you Liv and Open. The only good thing is that we will receive the plan next week and the school will start to receive additional funding. So at least if we have to appeal there is some more support in the interim. The family are all so worried about DN's mental health but because he bottles everything up at school and does not present behavioural challenges it seems like this and his learning difficulties (he is 2-3 years behind his peers) are not important.

My sister and I applied for the EHC assessment (and then successfully appealed against LA's refusal) as school were dithering. We were wondering afterwards if school doesn't want him to get an EHCP as this would highlight how they have failed him by not attempting to secure funding sooner.