Reception auties 2018/19 - thread 2

[openupmyeagereyes]

Thanks to LightTripper for the thread title. This is the continuation of the thread for parents and carers of dc with autism in their reception year at school. Please join us if you can or, if you have dc due to start reception in 2019, feel free to drop by and ask us questions.

Thread 1

Open ds didn't go to sleep until 9.10pm last night, woke at 2.20am and stayed away until 5.15am making lots of noise (my neighbours must hate us) dh had to be at work and was awake from 2.20am aswell as it's not possible to sleep under a roof with ds making so much noise, ds then went back to sleep from 5.15 until 7am. He does this regularly

Open when ds used to do his all nighters in nursery I would drop him off, come home clean up, sort anything out that I needed to do and then set my alarms and have a couple of hours sleep on the sofa before he needed collecting (he used to do full days) that used to make it feel better in the middle of the night knowing I could get my head down for a bit the next day.

But can't do that now because of school and there ridiculous hours he's on.

danni how’s he doing with the longer hours?

liv is the weighted blanket useful for your ds? In what ways does it help him?

He only does an extra hour and half a day, I pick him up at 11.45 for lunch then he doesn't go back until 1.30 then stays until 3pm.

He's fine with it. X

To be honest he hated it at first. We mainly rolled up his toys in it and made him carry it places to give him load bearing feedback.

Now if he's relaxing on the sofa I'll put it on him, sometimes he wants it on and sometimes he doesn't. I think it does help him to feel more grounded.

I sometimes use it as it's a really nice feeling to have the weight on you.

For the amount of use it gets I'm glad I didn't spend a fortune on it.

That’s good danni. Is there a plan to increase his hours to the full day yet?

Thanks liv. Dh was looking at blankets this morning. It’s worth a try.

It was my turn to get up with ds today but poor dh didn’t manage to get back to sleep. I think we will be going to bed not long after ds tonight.

danni I’m sure our neighbour hates us too. He is a single, middle aged man. He must rue the day we moved into this house.

Hi everyone! Can I join? We're waiting to see if early help will assess DS who has sensory issues and needs routines etc (we suspect asd) and he is due to start reception in Sept. Just wanted to say hi.

Welcome Lottie. Is your ds at a preschool? How is he doing there?

Hi yes he is. He's doing well now he has 1:1 and he's going through early help at the mo. We just thought he was quirky but the more I read the more it all fits!

I'm being positive as he's such a kind, loving, funny, charming little guy. He just has specific ways of encountering the world, mostly sensory and routine based. Trains are the current obsession. He's great though, and we know how to handle him most of the time, just hoping he'll transition ok!

Hopefully you can get a diagnosis before he starts school then. Have you applied for an EHCP?

Ds did not nap. He went to sleep just after 7:30. I am keeping EVERYTHING CROSSED!

Hi there! I’ve been reading and trying to keep up with everyone and everything but not got around to posting anything for ages. Lovely to read all about your dc’s achievements and progress - you are all such committed and inspirational parents, but I love your realism and how you acknowledge when it’s bloody hard work!

@lottie - hello! Sounds like you’ve got your one under control - well done! Are they attending nursery at the school they’ll go to? If not I’d contact the Senco at the new school and set up some transition days.

My ds (nursery currently) is finally getting his asd assessment in June, it’s taken a while. Review meeting at school today - making lots of progress in some areas (reading and maths seems to be pretty natural for him) but not the ones he finds hardest, mainly the personal social stuff. He’s finding it hard to regulate his emotions and is becoming increasingly defiant when he doesn’t want to do something. School are starting to talk about an ehcp, happy to go for one but I’d be surprised if they got one. No services are really engaging as the areas he’s finding difficult don’t seem to fit under anyone’s expertise, and catch him on a good day and he’s no bother. Who knows!

Jeb the nursery should be able to tap into a specialist teacher who can give strategies for the areas where he is struggling. They will have a SEND contact on the LA with who they discuss the SEN children in their care. Have they filled out any plan-do-review type paperwork with you that sets out targets and strategies to be used?

@open they have been doing some quite formal looking reports for the review meetings that lists targets and strategies although it doesn’t say “plan do review” that is what they’re doing. I think they’ve been lining it all up for an ehcp application since the beginning so I’m glad they’ve had the foresight. They’ve also started to ask about getting OT involved although he doesn’t have many sensory needs he has some minor issues with fine motor control plus a temper so no perserverence whatsoever if he finds something tricky. The school can access an early years advisory team but for some reason they are waiting for speech and language to refer in to them, I don’t really understand why as his needs which are impacting on his education are not really related to his language; whilst that is an area of difficulty for him his main difficulty is emotional regulation and compliance... I guess that’s why they want 1:1 for him as it’d really support his engagement

I think they change the names of the SEN forms periodically. The important thing is that you have some as it’s helpful for the EHCP application.

Hopefully you’re in an area where you can access SALT and OT. In ours ds didn’t qualify for either as his needs weren’t significant enough under current funding. They did assess him though and provided useful reports for the EHCP. In our area OT don’t deal with sensory issues at all, they offer a parent talk.

Ds did/does have motor skills issues and he’s made loads of progress with our private OT that he sees fortnightly during term time

We had a better night. Dh and I went to bed earlier. At 4:25 ds started talking loudly in his sleep which sometimes happens. I went in to settle him and he then slept for another hour. Dh and I didn’t get back to sleep but we got 2 more hours than the previous night so I’m feeling fine today. Ds had nearly 10 hours which is a lot for him.

danni I hope you had a better night. You have your paed appointment this month where you can discuss melatonin? It hasn’t been the magic bullet we hoped it might be but overall it has helped I think. We don’t give it every night but it’s becoming more and more frequent.

Open ds slept better than the previous night thankfully but that usually means a shit night to follow.

Yes we are there next week we haven't seen his paediatrician since July last year he's on 9-12 months appointments, so he can have melatonin this time since he had his operation in November she can prescribe now.

We have also ordered him a new bed & a comfy mattress which is coming at the same sort of time as we get the melatonin so if he doesn't hibernate for the next 6 months I won't be happy

Jeb is it September ds starts school? I remember you saying he was a bit younger. I would of thought he will need a bit of extra support for his emotions, the defiance & to stay on task etc. So I would go ahead with the ehcp and your right they may not issue one (arseholes) but at the very least he will get some extra funding for some additional support. Sounds like he's doing well especially with his maths and reading, I can imagine he will do fab with his speech & language with what you do for your job nice to hear from you. X

Hi @LottieBalloo

& hi to everyone else. X

I forgot to update on toilet training...

It will be 4 weeks on Saturday!

Ds has been in pants at school, his 1-1 takes him to the toilet every hour and half same as I do at home. He's been back a week and only needed pants changing once or twice in that time.

He's doing ok at home, I'm still having to take him and he's not initiating yet but never mind I'll work on that at some point, but for now I'm just trying to get him into the habit of going on the toilet and not in his pants.

We have the odd accident but on a whole I think he's doing well considering he's spent the past 5 years in nappies.

And don't laugh... when he gets off the toilet he puts his foot down the toilet and lunges forward and flushes his foot down. His so bloody quick you don't get chance to stop him.

He flushed his foot down the toilet at school yesterday, his 1-1 was trying to tell me with a straight face.....

Welcome Lottie! Your ds sounds lovely.

Jeb, so glad the meeting went well and that you ds is progressing. Have you read much on PDA? Might be helpful in drawing with the defiant behaviour. Great that the assessment is coming up to.

Glad you had a better night open.

Love the idea of your ds hibernating danni. Sounds like the toilet training is going well. If it makes you feel any better ds had about a month when he was at nursery where he would lock himself in the cubicle and play with various toys in the toilet bowl! He also tried to lick the water, which is disgusting. I think ds has the immune system of an Ox!

We had a tricky time yesterday. Ds grabbed the boiling hot pan I used for cooking and burnt his finger. In the past I'm not sure he would've noticed but yesterday he actually let me look and put an ice pack on it (definitely not allowed to run it under the tap!). My dd then started feigning all sorts of imaginary ailments to get my attention!
Anyway ds then got very attached to the ice pack and took it to bed with him. It was a real job getting it off him this morning! Hopefully he has learnt not to touch hot pans now.

Just a quick post, I’ll catch up later.

I wondered if any of you use paid babysitters for your dc? If so how did you find someone? Do they have SN experience? Thanks.

Welcome Lottie and hello Jeb! Glad everyone is doing well.

We have used babysitters open: if it's for a night away (only once I think) we've used our nanny, but otherwise we use another local nanny friend's daughter. She's only 16 but very sensible, and we are realistically never more than 10 minutes away (and her Mum is also only 10 minutes away if anything happened to us). We always try to get her to come before DD is asleep just so she gets a reminder that there is somebody else there and it wouldn't be a shock if she woke up and found us not there.

We don't go out very often TBH but that is mainly just us being old and boring (and often going out separately rather than together when we actually do go out).

If you want somebody with SN experience then it might be worth seeing if any local nanny agencies could put you in touch with somebody?

I think I may have asked that question here before... apologies if I have.

Thanks Light. I guess SN experience isn’t crucial but would be beneficial incase he wakes up and has a massive tantrum. We get barely any family support so dh and I rarely get out together. My in-laws watched him about 4 times last year so that we could go out for lunch which was lovely but this year they haven’t offered at all. I worry about using the online baby sitter sites as these people could be anyone (I am very paranoid!).

We haven't. Mainly use grandparents or friends or go out separately. I heard www.snapcare.co.uk recommended on here recently but I'm not sure if they do babysitters or just nannies.

I think even a nanny without SN experience might be good as they would be unflappable, and even if they hadn't personally cared for any children with SN they would be bound to have known some... and you could brief them on what to do? It would probably mean paying nanny rates rather than babysitting rates, but if you're not going out that often it's not a huge impact...

I can't remember, are you in London? If so SNAPcare do SN nannies and they've been very helpful on the phone with me when I was trying to work out pay rates ... they might be able to put you in touch with somebody who was looking for extra work (but I think they only cover London).