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

[Hurricane74]

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.

My DS seemed okayish this morning apart from getting dressed - however, when I dropped him off his 1:1 told me that she has an emergency dental appointment tomorrow morning. This will be the first time that she has not been there at drop off so I'm feeling a bit apprehensive. I'm wondering when is the best time to tell him - I'm thinking on the way to school.

Open glad to hear that sleep is improving and that things are better than last year.

Dimples we had similar a couple of weeks ago (not her 1:1 but the TA that I usually leave her with in the playground was away for a few days ... and I didn't know so couldn't prep her!)

We found the "hug button" helped - and then having another familiar TA that I left her with instead. Would the class TA be able to meet him in the morning instead? Would he be familiar enough with him/her?

What's the "hug button" light?

Hope it goes ok tomorrow dimples. Ds's 1:1 was sick for 2 days just before half term but ds seemed ok with it thankfully.

You basically draw a heart (or anything - a friend did little smiley faces instead) on your hand and one on their hand and tell them that if they need a hug they can press it and they will feel you hugging them. It actually does work weirdly - thinking of the person and putting the pressure on your hand feels really comforting like a hug.

DD really liked the idea (though I have a feeling I actually pressed it more than she did during the day - but it helped with the transition to me leaving, even if I think she kind of forgot about it after that).

The idea came from an autism parents group I went to, and originally I think from this:
the-motherload.co.uk/the-hug-button/

That's a really lovely idea Light. I don't think it would work with ds but I'm definitely going to try it with Dd when she moves nursery after Christmas.

dimples I hope this morning’s drop off went ok.

Light that’s a really sweet idea.

liv I hope all’s well with you.

Ds needed a bit of bribing to get ready this morning but he had a great day apparently and has settled back in well so that’s a relief (though I try not to get too excited about one day!).

Thanks for your kind words - drop off was fine but my Mum was told by TA at the end of the day that his behaviour has been challenging the last couple of days but she didn't give any specifics. I asked him if he had had a difficult day and he said that there had been a strange noise in the hall which frightened him.

dimples I wonder what it was? Your poor ds. At least it’s something to speak to them about. Hopefully he’ll settle down again soon.

The early waking has resumed now ds is back at school. 3:30 ish today. Ugh. I feel it must be anxiety driven but I’m unsure what school can do about it. Otherwise he seems fine, aside from the slight reluctance some mornings. I may have to try the melatonin tonight though I know he will make a fuss about it. He’s also back to only wanting me to get up with him after relaxing that over the last couple of weeks and letting dh take him down.

Ugh open! You must be exhausted.

I hope he's better today dimples.

Ds has also been very unsettled and tired at school. I think in his case it's more because of having half term and trying to settle back in. They are also having lots of difficulty getting him to put his coat and shoes on to go outside (unsurprisingly).

Interestingly, having never been interested in the weighted blanket before, ds is now loving having a cup of milk under it in the evening.

He also got up at the end of his movie last night and said 'time for bed', went downstairs and got into bed! Completely unheard of! He must be tired.

liv the coat battle seems common, it must be so frustrating. Ds will sometimes refuse and says he likes to be cold, other times he whinges because he wants to be carried and cuddled to keep warm! This morning he wore his scarf and hat for the first time this winter, it’s pretty chilly here in the mornings at the moment though a lovely sunny day today.

So great that he took himself off to bed. It’s amazing when you notice how much more mature they are.

DD often says she likes to be cold too but she'll relent once we actually get outside.

Good day today. If you remember on Day 2 of school she got very upset because they tried to make her class monitor in assembly in front of the whole school.... Anyway, randomly last night she said "I wonder when it will be my turn to be monitor" and we talked about it and she was really keen but didn't want to get a round of applause.

Anyway, today she got her turn to be monitor, and instead of a round of applause the whole school gave her a thumbs up! To be honest I would have guessed she wouldn't even have liked that, but well done school because actually she loved it! She's so made up. She gets her badge for the week tomorrow.

That's so great light!

Ds went to school this morning with no shoes, socks, coat or hat (we normally manage to get him to at least wear them to school). Not even a smarties bribe would work.

He's still on his sensory seeking thing and basically just wants to be in the bath.

I managed to get an hours peace yesterday when we found Bob the train on you tube, which completely zoned him out.

Really not sure what's going on in his little head at the moment. I'm wondering if it's a developmental thing because all of a sudden he's started using Makaton signs back to me. Totally amazing really as he's shown pretty much no interest in the last 4 months.

That seems plausible Liv - I do think that those leaps in understanding take a lot of energy, so it would make sense that he is looking for comfort/sensory seeking more than usual? I always think a bit of TV is good for DD too. She is completely absorbed in it when it's on - almost impossible to get her attention for anything else - but I do think it's the single thing she finds most relaxing and goodness knows our small ones need a bit of down time.

How is school about the no shoes/socks thing? Do they take it in their stride? I guess you drive him there, so he's not freezing his feet off on the way?

Light that is such a lovely story re your daughter. My son is the opposite - one of his favourite things is telling other people to clap!

Liv that sounds like a very stressful school run. Getting dressed and putting on coats is a challenge for us. My son loves going on YouTube on my phone to look at 2 of his great loves; church bells and water slides. Our current rule is that he has to get dressed (or rather let me dress him) and read to me before he can have the phone! Using first, then, next visuals to help. He'll still normally refuse to put his coat on but I'm lucky that so far as soon as we're outside he relents...

I called school earlier as I realised that I hadn't received a time slot for parents evening the week after next. The secretary advised that the teacher had said we'll need more than the standard 10 min slot and that she will remind her to fix up our meeting - I also felt that we'd need more than 10 mins but for some reason this really made me wobble. I think it's just one of those occasions when I wished we were 'normal'.

It was non-uniform day at my boy's school. One of the other Mums told me that my boy had, had the class in stitches again. His teacher had said that the girls should wear normal clothes not princess/disney dresses. My boy asked if the boys were allowed to wear dresses.

Light yeah I think you've hit it on the head.

Thankfully the school are pretty relaxed about it all. I told them not to worry too much and if they need me to I'll sign a waiver for him! Hopefully he'll start putting things on when it gets really cold!

We only live under a 2min walk from the school so DH usually just puts DS on his shoulders and carries him round.

That's so funny dimples. I hope parent's evening goes well. I'm sure It will be good to have the extra time to discuss ds.

Sometimes things like bribes work with ds, other times (like this morning) he's deaf to everything. Even with visuals, bribes, comfort toys etc. Thankfully days like this morning are becoming less frequent. But it always takes me a bit by surprise when he goes through a phase like this.

Hi, I posted back in the summer, haven't been online since,

Can I ask did anyone have any issues with there ehcp. My sons is just in draft stage now & received such a poor draft this morning, with absolutely nothing about him having a 1-1 in it at all. Says provision to be made by class teacher on each section.

The outcomes in section F are also really basic and shit too.

Intend to reject the draft first thing Monday morning.

He receives 1-1 at school anyway the school fund it.

He's 5, assessed as having the development age of 16-26 months he has lots of issues bless him diagnosis of asd, i thought it was fairly obvious how much support he required but then receive this ehcp draft and I'm in utter disbelief.

His speech is that of a 2 year old so he's 3 years delayed in speech and language and nothing in ehcp mentions salt at all, no salt even assessed him during LA assessments.

Intend to kick off next week 

Oh that sounds rubbish. It does seem like lots of Councils want to push things all the way to Tribunal now. I haven't used them myself but I hear good things about SOSEN and IPSEA for supporting you through the process... Good that the school are being supportive but they should surely be getting extra budget for that? Do they get to see the draft too? Might be worth seeing if you can get aligned...

LightTripper thank you for replying, they are using the SEN funding they receive, he only does 11 hours a week so that's what they are using for his 1-1 for now, he's on a reduced timetable since he started and after Xmas they will be gradually increasing his hours which is when the ehcp would of been sorted presumably. Probably not now I'll be tribunaling there arse!!

Doesn't make no sense to me, I know of children much less severely affected than my son & there parents haven't had these fights along the way.

My sons 5 but like a toddler in every sense, he wears nappies for school etc you know within seconds he has asd its very visible so not sure why I'm having to prove his disability to these idiots ? X

danni ours had no mention of 1:1 support. When I queried it they said it was up to the school how to spend the funds provided. Others on this thread had similar. The cash allocation was only included in the final draft and the case worker told me it funded 30 hours, the remaining half hour was so he could be in a group activity

Did you discuss targets and outcomes at your planning meeting? I substantially red-penned our draft to make it more specific and most of the changes were put through.

Openup thanks that's made me feel better, school are really supportive and assure me he will have 1-1 full time what ever the wording, even now on a break time (he only does mornings so only there for morning break) his teaching assistant goes outside with him and supervises his every move, she's lovely she even shares her snacks with him and if he's eaten no breakfast because he's in a mood and throws his breakfast which is a regular occurrence in a morning I let her know and she takes him to make him toast or fruit so he's not hungry. I really can't fault the school at all. So I trust them just not the LA lol.

School senco said to me at parents evening if they don't get the relevant funding they would appeal that - she just didn't go into anything further.

Do you mind me asking what things you changed in the draft?

Sorry openup forgot to answer, the meeting was very vague really, the targets are all centred around getting him to turn take, stop in dangerous situations (2 years of targets being set on this in nursery to no avail) increase interactions with his peers allowing them to enter his play and respond consistently to his name, that's all I can remember off the top of my head, is that the sort of thing it's supposed to be?

I can check properly when I've got the master to bed x

It sounds like the school are really supportive which is terrific.

I changed a lot of things, some content and some just wording. For instance, if it said ‘he will be able to’ I asked them to change it to ‘he will’ as I believe there’s a difference, particularly in our dc in being able to do something and actually doing it. If it said x could be done or provided I changed it to will be provided. That sort of thing. I didn’t want it open to interpretation.

OpenUp did you accept it with no mention of the 1-1 in the end then? X

OpenUp can I be very cheeky, and ask if I can email you my sons ehcp over please? You can at the very least have a laugh lol.

I'm not sure it's what it's supposed to be.

The targets are very vague, and nothing is really reccomended other than blowing bubbles giving him opportunity to do puzzles to improve attention etc. The targets set are the same sort of shit that's been being set the past 2 years by various agencies, it's nothing new iyswim.

Thank you x

We accepted ds's with no mention of a 1:1 and with it saying 'school staff' 'daily' except for salt which specifies the hours provided.

I did ask them to change it but they wouldn't and I really didn't want to appeal. I also felt that the provision in section F was good and very specific.

Ds now has a full 1:1 and support over mealtimes.

I'm actually really shocked that you had no salt input. The Ed psych also sounds rubbish.

Definitely contact IPSEA they are amazing.

I also think that Bernados does a service where they will go through the draft with you. I had someone from a local disabilities charity look through mine with me and it was helpful with wording etc.