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Original poster

DS with ASD starting school Sept 2018 - I am feeling overwhelmed

992 replies

Hurricane74 · 07/11/2017 14:48

Hi

My son has a diagnosis of ASD and is due to start school next Sept. We are in discussion with the LA about an EHCP and have a Joint Assessment Meeting for early December. I had hoped he would go to a mainstream school and see how it goes, with the option of a school with an autism unit or a SS is things don’t work out. But now am feeling very doubtful a mainstream school could meet his needs. We had a report from the LA yesterday based on observations of him at preschool and it makes such sobering reading. It puts his developmental age at 8-20 months for most areas (he is 40 months) and his understanding and listening skills at 0-11 months. (His moving and handling skills are almost age appropriate). His main issues are social anxiety, sensory issues around noise and his lack of understanding and speech. Has anyone experience of a child with similar issues managing in a mainstream setting? If so, what kind of provision did you ask for and receive? Thanks for reading.

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openupmyeagereyes · 01/06/2018 14:53

I finished reading Toast while ds sleeps, it isn’t long. Another one for a mixed emotional response, I think they are all going to be. She has it pretty hard with two sons on the spectrum. I imagine my ds sits somewhere inbetween her two. It’s encouraged me to ask about the NAS EarlyBird course though I’m not sure they run in our city so I may have to travel which is a shame.

I’ve now downloaded The reason I jump.

Chasingmytail17 · 01/06/2018 20:16

Congratulations liv great news! Thanks for the book suggestions Light

dimples76 · 01/06/2018 20:42

That's wonderful news, Liv

I have just ordered some books re starting school - I'll let you know what they're like

livpotter · 02/06/2018 11:58

Thanks dimples and chasing! Going to start reading through the draft today.

I love 'the reason I jump' open and the second one 'fall down seven times get up eight'.

openupmyeagereyes · 03/06/2018 22:13

liv I finished The reason I jump and downloaded the next one. I found it fascinating. It’s hard to get my head around how differently he sees the world and I wonder how much of it relates to my own ds. The main takeaway I got from it was to try to be as patient as I possibly can be as often as possible. It will be a constant challenge no doubt.

We have our first playgroup tomorrow morning with the ‘adult led’ activities. I’m dreading it but trying to keep it out of my mind...

openupmyeagereyes · 03/06/2018 22:14

I don’t expect him to participate until about week 3!

livpotter · 04/06/2018 08:17

Good luck with the playgroup today open.

Yes I find the way he talks about processing time really interesting. That book was a real lifeline after my ds's regression, when he was almost completely non-verbal. Definitely made me more patient!

Dimples and Sue. I was just looking back through the thread and i was wondering if either of you got anywhere with getting the LA to change the terms 'daily' and 'educational staff' on the EHCP? We've been granted the equivalent of a full time 1:1 and mealtime support for each week but it doesn't actually state that on the plan. The actual description of the provision is really detailed but at the end it's 'daily' and 'educational staff'.

openupmyeagereyes · 04/06/2018 13:34

Well the playgroup sort of went better than I thought. He didn’t join in with much (he wasn’t the only one) and he did want to leave at times but he didn’t get upset which I am very pleased about. I’m hoping that he will show some progress over the coming weeks!

SueVide · 04/06/2018 17:31

Sorry for the radio silence. Things have been tough work wise and have had a few family things to deal with. I have been reading and adding to my Amazon list Smile

We're still waiting to hear from the 2nd school about whether they would take DS via EHCP. We still haven't made a final decision but should hear from them this week.

We had a lot of negotiations with our LA about the draft and like you Livwe got full funding for a 1:1 but nothing explicit in writing. In the end we settled for 1:1 from a suitably qualified person during structured teaching hours. It seems like pur LA are particularly difficult though. Hope yours is easier.

Glad the playgroup went well Open

dimples76 · 04/06/2018 18:09

Glad that the playgroup went well open.

Liv, I didn't get the LA to put it exactly as I wanted re 1:1 but I did get them to amend it. It now has rows such as:

235 minutes per week (1 to 1) costed at LSA rate and all the time in the rows adds up to 2025 minutes 1:1 a week (full week is 1950 minutes but he has option to go in early before the stampede!)

Sue sorry to hear things have been tough and I hope that you hear back from the school soon

livpotter · 05/06/2018 07:43

Great that you ds did well at the playgroup Open.

Thanks so much Sue and dimples, that's really helpful. I'm not really sure what my LA are like yet. The way they have written the provision is really detailed so i'm pretty happy with that. I am going to get our local disability charity to look it over as well, as I am sure I'm probably missing something vital!

Sorry you've been having a tough time at work Sue. Hope it eases up a bit this week.

openupmyeagereyes · 05/06/2018 17:34

Sue I’m sorry that work has been tough for you. I hope things are on the up now.

liv I hope your EHCP has everything you wanted.

We have the EP observation tomorrow. I hope ds has a typical day. We are busy trying to finalise our update for the application, it has to be there by Monday. It seemed so far away we took our foot off the pedal, still we should be ok to finish it and get it in the post in a couple of days. It’s getting so close now, I hope he gets what he needs. I suppose most people ask for 1:1 support though?

livpotter · 05/06/2018 18:56

Thanks Open.

I hope the EP visit goes well tomorrow. I guess it's less about asking specifically for a 1:1 and more about all the additional things ds needs that could only be provided for with a 1:1. Not sure if that makes sense!

I'm going on a positive behaviour course tomorrow, which should be interesting.

openupmyeagereyes · 05/06/2018 20:02

Oooh liv, do share if you get any good tips.

Yes, we’re trying to outline all the things this 1:1 support would need to do. Will definitely have a sense check of it all though, thank you.

openupmyeagereyes · 06/06/2018 10:44

So, EP meeting went well I think. He was very nice, a locum though so we probably won’t see him again. He seemed to be in agreement that ds needed 1:1 support so fingers crossed. He was going to observe him afterwards. I’m interested to see his report now.

openupmyeagereyes · 06/06/2018 11:32

Does/has anyone used a private (or otherwise) EP for anything other than assessment? Presumably they can work with children on an ongoing basis too?

livpotter · 06/06/2018 22:27

Glad the EP assessment went well Open. I don't have any experience of getting a private EP. I probably would've thought about it if I had disagreed in the provision from the LA one though.

Course was good today, it was mostly about recognising what is causing your child's behavioural issues (found ABC charts etc). Part two is in a couple of weeks and talks about strategies. As always though the best part is being able to speak to other parents in a similar situation.

openupmyeagereyes · 06/06/2018 22:36

Glad your course was good liv. Yes, it’s nice to meet parents in rl who are experiencing the same issues.

I’ve just started doing an ABC chart for ds. Item one is refusing to get out of the bath last week. I’m sure there’s another from earlier knocking about on another bit of paper somewhere that I need to add.

Trying to print all our info to send tomorrow for the EHCP deadline and it’s taking ages. Dh just changing the toner cartridges...

openupmyeagereyes · 06/06/2018 22:38

We are normally in bed now. Ds will be up at 5:10 ish and it’s my turn to get up with him Shock

livpotter · 06/06/2018 22:42

I found ABC charts really useful. It helped me recognise triggers but also made me realise how often I was minimising behaviour.

Hope you get everything printed and a decent night's sleep!

openupmyeagereyes · 07/06/2018 11:40

All posted, should arrive by 1pm tomorrow. All we can do is wait now, I hope it’s enough.

Ds awake at 4:50 this morning, plus he woke briefly around 1:30 zzzzz

dimples76 · 07/06/2018 13:17

Glad that the course was good Liv and that you got your paperwork sorted Open - hope that you're not too tired today.

We first met my son's EP (LA) about three years ago and she has had regular input since then - mostly around the reviews of the SEN support plans. I have found her input invaluable - unfortunately when my boy starts school he will be under a different team.

We had our first school visit today (ahead of full cohort). It was a lovely, gentle introduction to school - we looked around his classroom when the children were in assembly and the head of Early Years had such a lovely manner with him (unfortunately she will not be his teacher as she is soon to go on maternity leave). They let me nephew who is in Yr 3 at the school come around with us and we also saw my sister by chance (she is a TA there) so I think it helped him feel more at ease. Unfortunately the person who is earmarked to be his main 1:1 is recovering from an operation so won't be around for the visits but things are looking quite positive. I hardly dare type this for fear of a setback but we have just had a month with zero toileting accidents - some days it felt like we would never get there!

openupmyeagereyes · 07/06/2018 13:36

dimples that is amazing, well done to your ds. School visit sounds great, I’m so glad it went well Smile

Thanks for the info on EP. He said it would be beneficial to re-refer to help with EHCP review but he also said that due to cuts in services parents of children with asd often seek out private salt and EP. It got me wondering what else they can offer. I should have asked him but we’d already been there over an hour and I didn’t think about it much until afterwards.

We have our new parents evening tonight and will be ordering uniform. I may need tissues later...

livpotter · 07/06/2018 13:38

That's so brilliant Dimples!

openupmyeagereyes · 08/06/2018 08:04

Parents evening last night was good. Headteacher and reception teacher did a nice talk about the school journey and how the children will learn through reception, how to get them school ready etc.

Reception teacher recognised us and came to chat, we also met the SENco though she is going on mat leave in Sept. That role is being taken over by the deputy head who I have met and actually went to school with, strangely.

It was nice to see the classroom again, the garden was bigger than I remembered too. I think ds will love it, once he gets used to it, but they may need to do a risk assessment...

I am feeling a combination of excited and anxious. The biggest issue for us (aside from his learning and development) is whether he will eat/how we can encourage him to eat there and getting him to use the toilet. At the moment he resists going to the toilet at nursery, though he sometimes does, and doesn’t eat anything. Only there 9-12 but obviously the school day is much longer.