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

Regarding independence, ds isn't really independent.

He can't dress, he can undress but not when asked, it's when he decides, usually when he wants to take nappy off to pee or pooh on the floor then he will strip his pants and nappy off. he still can't really take top half off he gets stuck and gets angry with his head stuck which can be funny to watch he can take coat off but can't put it on although can zip and unzip it, he's still in nappies, He can't go up and down stairs alone bcos he's a toe walker and has poor balance so falls and has no danger awareness so I have to hold his hand up and down stairs bcos he falls, i still have stair gates on, i try to work on independence as much as I can and have for years.

it's just frustrating when i try but he won't co-operate. But I'll keep trying. As always.

Have you shown him the coat flip trick Danni? Putting coat on was actually one of the first things DD learned and if he can take one off I suspect putting it on is actually easier with this method (if he's motivated.... always the big if!!) DD does sometimes get stuck taking things off and she gets very frustrated. I need to get her some bigger PJs I think as it's obviously easier with baggy things!

Really pleased the Grommets op went well dimples - sounds like DS was great! What a brave boy!

I am taking DD (and DS - first time) to the dentist on Monday. Slightly dreading it though hoping DD will enjoy showing DS what's what so maybe it will be OK ... she hasn't been for a year though, because we just forgot, so she may have a wobble too. We'll see.

Hope that school went well today choccy.

Getting dressed is a bit of a challenge here - my DS has poor core strength and everything (if he's willing to try) looks v difficult. He puts his face in the hood of his coat then turns around and puts his arms in. I am v bad for doing too much for him but it is hard as you say Open when you're trying to get out of the house for school. Hope that your DS has a good birthday.

We have a month of appointments coming up. My niece has her ADOS assessment next week and her twin brother the week after. My boy is having an attachment/development trauma assessment next week (he is adopted) - the first step is that we have to go to the therapists offices where we will play together and it will be videoed for me to review with the therapeutic social worker at a later date. I'm sure that it will be useful but I'm dreading it.

My goodness danni. I was waiting to have time to come on here and say what a great job you’re doing; you have a much tougher job than me and you seem to cope with it so well. Then I came on and read your last post and it brought tears to my eyes. I didn’t know your ds was adopted, what an amazing person you are. Did you know he was autistic when you adopted him? Feel free not to answer that question if it’s too personal, I’m just curious.

Danni your ds sounds quite similar to mine when our, he definitely needs 2:1 if we leave the house. Have you got a Sen buggy, it took me a while to decide to get one but it has been a bit of a game changer and ds loves it.

Good luck with the dentist light. The Peppa Pig dentist episode always goes on repeat here before any appointments.

I hope the assessment goes well dimples. Hopefully they will give you some helpful feedback afterwards.

Hope your ds has a lovely birthday open.

I agree with you Open that Danni seems to be managing really well with a lot of challenges. I adopted my son when he was 18 months old. His medical report stated that he had global developmental delay, his foster carer described him as a baby as 'flat' and his birth family history includes learning disabilities and ADHD so yes, I was anticipating challenges - I had expected any child I adopted to have SN but his needs were at the extreme end of what I thought I could cope with. In fact he is doing a lot better than I would have imagined and is certainly not 'flat' - currently skipping and singing around the house. Still don't actually have an ASD diagnosis - but I can live with that for now ...given that we have an EHCP and DLA.

Danni I really feel for you and the toilet training. I thought we had cracked it last Easter but since starting school problems have recurred. I have not really got any tips because I think I have not done it very well.

@dimples76 bless you x your ds has made all the progress because of people like you hope your appointment next week goes well x

@dimples76 I'm pleased you get dla. We do too, we just had ds renewed until his 12th birthday & mobility added too so one less thing to worry about for a few years.

@openupmyeagereyes I think you confused mine and @dimples76 last posts xx

I hope your ds has a lovely birthday this weekend and the party goes well 🎈 🎉 and the christmas decs coming down haven't been too much of a problem. I don't think my ds was too happy that he could no longer shoot his nerf bullets into our tree

@livpotter we didn't bother with a sn buggy bcos he hated his pushchair he was always climbing out or tipping it sideways while strapped in or head butting the frame. He was in it until 4.5 it's the longest I could make it last, but he's too tall now so I've just managed him on his reigns since but by god it's hard work, after an hour taking him out im thoroughly exhausted. he's like a Rottweiler on a lead

I see an older boy in a sn buggy and he looked like he was getting a bit too big for it and he looked about the same height as ds so I was thinking of requesting a wheelchair instead if things don't get better.

But then I'm not sure if they will give a wheelchair for a 5yr old and I'm certain ds won't sit in it anyway.

@LightTripper good luck with the dentist. Ds goes every 3 months she said it was good for his routine to go regular, he's never sat in the chair she looks in his mouth with a torch takes about 30 seconds he usually try's to bite one of her fingers off lol then she just says see you next time, she's asked him to sit in chair but he refuses. She does the sn schools so she knows about asd so she said she won't force him into anything which is good.

hes got lovely little teeth not sure how with the amount of chocolate he eats but I give them a good brush twice a day so just have to hope that's enough and he never needs a filling or anything.

Sorry about all the individual posts my memory is like a goldfish so I have to keep going back to check each persons last post!

@Jeb86 quick question if you don't mind please. The blank language levels, (thank you for advising been working on these with ds)

what level equates to what age?

& what sort of blank language level would be expected of an NT 5 yr old & what level do you usually find asd 5 yr olds at?

Thank you. X

@danni0509 I don’t think there is any formal robust research on age norms, I guess because these kinds of questions can be so sensitive to the complexity of the subject you’re asking about and children’s experiences. From what I remember about 65% of 5 yo are able to answer level 4 questions, but I think with that you have to bear in mind that children might be able to understand what you’re asking before they are able to answer it. But their answer should be in the right ball park - e.g you ask a child where they have been and they say “banana” then they’ve not understood what you’re asking, if they answer “park” but they’ve actually been to the shops, at least they’re recognising the “where” part.

There are some common difficulties within these levels that children with ASD can typically find difficult - answering how someone feels (my heart melts when my kids at work answer “soft”!), predicting what might happen next (how can we possibly know? Difficulties with flexible thinking here), guessing at what someone might be saying (but it’s a picture and their lips aren’t moving...or again, I don’t know, the picture doesn’t tell me).

As you go up through the levels they become very inferential and children need to get their heads around making an educated guess at the answer, sometimes I even say to kids “now we’re going to have to do some guessing because the picture doesn’t tell us exactly, but there are clues...”

Can I ask where abouts you would say your DS is at with it? I might be able to suggest some activities xx

Danni and livpotter we stopped using the buggy when ds started school, mainly because he really needs a lot of exercise to tire him out. If he went in the buggy he'd be bouncing off the walls at midnight. Although without the buggy he is a nightmare, Rottweiler on a lead is a very good description! It's the lesser of 2 evils though. 2 of my older dc are part time wheelchair users so occasionally I will put ds in one of their wheelchairs if I get really desperate.

@Jeb86 thank you for your reply,

he seems ok with the level 1
What is that?
What can you see?
Is it a - - - (yes or no response)
What is - - - doing?
Find one like this.

He might know some of these questions, but not all as he would need to be familiar with what I was asking or know the name / object I was asking him about etc.

I think he knows some level 2 stuff but only just dipping his toe in.

So for example

Which one is a - - - he would know the answer with some things.

What is happening in this picture? he likely wouldn't be able to answer unless it was really obvious like the character was eating a cake or in the bath or in bed or something like that.

Lately I've been reading stories, he's not really keen on me reading to him, but I've not really been reading words out we are looking at the pictures and I've been describing to him what's happening on the page sort of making my own story up out of the pictures making it silly which he loves and then turning the page and trying to get him to do the same.

As for Level 3 onwards he hasn't a clue, I couldn't even look at the list and say oh yeah he's nearly ready for that as he's no way near. His thinking is too concrete to understand those sorts of things.

He is very literal with his thinking,

Today in Tesco I said ds do you want nutri grain bars or go ahead bars whilst I was pointing at said items, he said no, yellow ones pointing at belvita breakfast biscuits so I said ok you can have those for breakfast and as I put them into trolley he said eat when black has gone. he meant when he woke up at breakfast time and it wasn't dark anymore (black sky gone!)

And another time I made chicken, rice & veg in sauce but he decided he didn't want chicken veg or sauce just the rice, so I dished his rice up and he was being a fuss pot looking in the bowl of rice inspecting it for bits of veg etc so I said no vegetables ds its plain. well he thought I meant plain as in plane so he was only fishing about in the bowl for a plane (aeroplane!!) lol!

my mum bought him a lush bath bomb it turned the bath red, which he couldn't understand, i could tell from the confusion on his face, so I said nan bought you a red bath bomb, so next bath time - no bath bomb added. just normal water, he said mummy put white bath bomb in today.

Plenty of other examples. His way of thinking does make me laugh!

@danni0509

Your ds sounds like he’s really trying to figure things out and trying his best to express himself with the language he’s got, which is really great that he is so motivated to communicate these messages to you. My ds says every morning “is it daytime yet? The dark is finished”. Or the opposite at the end of the day, although he gets upset when the “light is finished”.

In those moments I would definitely tell him explicitly what to say next time, e.g say to him “yes, you say ‘I can eat them for breakfast in the morning”. Children with asd are often very good audio learners and can remember chunks of phrases which they then learn over time how to adapt to new situations. My ds yesterday learnt how to say “my hands are not cold anymore” rather than “oh my cold hands have finished” and a few hours later he said “my shoes aren’t dirty anymore”. So keep on rephrasing his language - it’ll show him you understand him, but also give him a chance to hear the good language model.

Level 2 questions - i’d Definitely stick to working on these before moving on. You’re right in identifying that level 3/4 are abstract and right now he’s more at a concrete level. Books are a great tool and well done for ignoring the words! Picture description are much more helpful, try to slide in things as you’re going about your day - be mindful of how you can be modelling “who” “where” “what’s happening” questions - for now i’d Ask and then answer them for him, begin to leave a gap e.g “oh who’s at the door, I wonder who is is? ....it’s....etc” this way he gets to listen and learn these kinds of questions and vocab before testing him on it. (Comments = teaching, questions = testing)

I’m back in work on Tuesday, there’s a book that has a bunch of activities on level 2 working so I’ll take a piccy if it and send it to you :)

Sounds like you’ve got a real handle on ds and working hard for him. I’m just sad you don’t have the SALT support for him.

Well getting ds ready for school and out the house this morning was a nightmare. Hope you are all having better mornings!

Ellie we don't use the buggy to take ds to school as it's just round the corner and he already appears different enough. But it does mean if I take him out on my own I can let him run around then get him home safely at the end without having to carry him kicking and screaming. He is so strong now I'm getting past the point where I can hold onto him if he really wants to get away.

It's amazing to have an SLT in the group Jeb - it's fascinating how this works. I never thought DD's language was behind although we were told she learned differently (she learned mainly nouns to begin with, and then started putting sentences together in chunks so it was all surprisingly grown up for her age, and she reversed pronouns a lot to start with). By contrast my DS is coming up to 2 and is way behind in his language (only has about 10 words, maybe 15-20 if you include things like animal noises) but everybody seems fairly relaxed about him so far as he is social and has lots of other ways to communicate (e.g. the other day pointed at the patch on his plate where the sausages were and grunted to say he wanted more, or if he can't find a toy will find the box or a picture that looks like it in a book and point to it). But then that seems like so much effort I think making the words must be hard for him, or wouldn't he just do that? It's such a fascinating area I'd love to understand it better.

There is an SLT I like on YouTube with a channel called Chirp, and she recently did 5 "New Year's Resolutions" and one of her tips was to model language (i.e. say what the child should say rather than asking questions all the time) - sounds like you would recommend that too? Video is here.

Turns out she is anti-ABA which is interesting for an American channel (she's put up videos for Floortime which is a more play based and child-led approach). ABA seems to be so much "standard" in the US that it's easy to worry we are somehow missing out on helping our kids because it isn't standard here, so I thought this was interesting and reassuring (and seems to make a lot of sense to me anyway).

Sorry this morning was hard liv. I am dreading Thursday a bit as we've been slipping later in the mornings over the holidays, so I need to start getting DD up a bit earlier so it's not all a big shock on Thursday! Hopefully DS will settle back into routine soon.

Hope pick up went better Liv. DS is not keen on going back tomorrow - his 1:1 is on sick leave so he's more anxious than usual about school.

Good luck with the return everyone.

Hope that tomorrow is easier Liv

We're back to school tomorrow and somehow I have ended up taking 4 children to school tomorrow (rather than my usual one). What could possibly go wrong ...DS seems quite relaxed about the prospect of returning to school but I'm worried that I'm kidding myself. He also seems as tired as he did at the end of term and has been napping most days.

Good luck everyone!

Thanks everyone. It was a mixed bag, he apparently spent a lot of the day trying to hit his 1:1 and throwing things at other children but he also managed to put on his coat and shoes to go outside, which is unheard of! We bought him some new snow boot things which he actually seems to like wearing.

Good luck with the 4 kids today dimples!

Hope the first day back goes ok Sue.

Ds went back to school yesterday. So the screaming, crying and not sleeping is back. On a positive note housework is now 10x easier with ds out of the house for 6 hours.

Hope that things get easier Liv and Ellie.

Going to school with 4 children was fine - returning from school with 1 not so much fun!

We had a first today as DS was invited to a friend's house...However, I think it would be too much for him as his friend's Mum suggested that she collected him from school, gave him tea etc. I think at the bare minimum I'll need to collect him with them and walk to their house. I'm not really sure what's best - I have not spoken to this Mum about his needs before. Unfortunately, I seem to have broken my NY's resolution to focus on the positives already! This time last year it was unimaginable that another child would like to invite him around to play.

Hope things settle soon too Liv and Ellie. Our first day back tomorrow so I'm nervous, though DD had her first dance lesson today going up a class (so she didn't have one of us with her) and apparently loved it and was fine, so fingers crossed new term (with a new class set up) will also be OK

Great news about the play date dimples! I don't think you're being negative at all, just sensible about trying to make sure a positive stays a positive. I think my inclination would be to just talk to the mum and explain it would be best if you go with him at least the first time. We tried to get DD to go to dance with one of her school friends and her Mum (who were driving) last term and it was not a success - we reversed on that one quite quickly! I still haven't left DD at a friend's house for a playdate on her own (and actually no other parents have suggested leaving their kids with us alone either ... I think this age is still pretty borderline for dropping off and picking up even for NT kids?)

Hopefully you'll find they are a nice non-judgemental family but if they're not better to find out sooner rather than later I think....