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

@Choccywoccyhooha does dd have ehcp? With you saying u official 1-1 I presume not?

Are they going to apply for ehcp?

X

Oh wow – have been busy at work and missed loads!

Lovely to hear from you again Hurricane - so glad it is going well at school. Really hope the sleep improves soon – that is intense!

V impressed by DS’s maths prize open. Is he OK with getting prizes? DD hates anything that puts her in the spotlight. She is fine with singing in the nativity in a group, but wouldn’t do anything by herself (like saying a line or even walking out into the front with others), and when she recently got a certificate for doing “10 amazing things” at school (it’s kind of like a start chart or behaviour reward) they put it in her drawer for her instead of her going to the office for it. It also arrived in the last week of term, which meant there was no assembly for her to be clapped in, which I assume was probably not coincidence!

Sounds like your DS is a natural performer dimples, I can’t imagine DD doing that. Lovely that he is so relaxed and at home at school!

Love that your DS is another Paw Patrol fan danni. DD loves it and my DS (who isn’t even 2 and only has about 10 words) has a little Paw Patrol dance that he does when he wants to watch TV (and when the theme music is on) – he loves it! His class sounds lovely. I keep reading how much more accepting kids are now with all the work schools are doing on diversity and anti-bullying – I really hope it’s true! SALT sounds really disappointing though. I have to say our NHS one was not great either – seemed to take the view that if DD could say words there wasn’t much they could do for her (whereas her private one only signed her off recently, as although she is very verbal she still struggled a bit with things like turn taking and sequencing – the more social communication stuff that SLTs can work on too…) I’m glad school are stepping up at least.

And welcome Ellie and Choccywoccy! Glad to have you on board.

Choccywoccy I think I am the only other person on the thread so far with an autistic DD rather than DS so will be nice to compare notes! I do think this term is hard for them. DD actually loves all the Christmassy stuff but it really tires her out and her behaviour can be pretty terrible when she gets home. Do you have to go full time after Christmas – would they support you in maybe trying to ramp up to that between now and half term, rather than doing it all in one go?

DD has finished properly now (even the holiday art club thingy has finished). I will still be pretty flat out til Friday but (touching all available wood) looks like I should get the period between Christmas and New Year properly off at least… can’t wait!

Hi everyone. I was on the thread at the start but have just been lurking later on. Will update properly soon but just wanted to say I've been enjoying reading even though not been posting and to wish you all a merry Christmas.

Great that your ds's nativity went so well Ellie.

That does sound really tough choccy. My ds loves Christmas and presents but gets overloaded really quickly. Usually either me or DH spend most of Christmas in another room with him trying to chill him out. Would it help your dd if you had a timetable so that everything was more predictable for her?

Thanks dimples, yes she is great. I was super impressed with how well she did to keep him calm and in the room.

Hope you get the time off light.

It's dd's last day at her nursery today, she moves to the new one in January. Feels like the end of an era for us!

In the new year we are changing our OT sessions to 1.5 hours every two weeks so that ds can have 45mins to get all the crashing and bashing out his system and then 45mins to work on writing and fine motor skills. Apparently a really good trick for helping with shoulder stability is to get them to write on a board so that they are having to use all their arm muscles.

Hi Mama! Nice to have you back.

Had a missed call this morning while dropping ds in school, it was speech and language, she said she had spoken to her specialist salt gone through my sons report with her after his assessment this week & the specialist salt had said to give my ds 4 weeks worth (30 mins per week) of therapy, then a 3 month break & then a review.

They are specifically going to work on asking and answering questions, the Wh questions - who, what, why & where (I do this at home I ordered a Wh pack off eBay and do this, but might be helpful to have a professional giving advice on top although at the assessment she didn't do anything with him that I already don't iyswim) she's going to show me some tips and give me a work pack and send the same pack off to school.

Probably would be helpful if they visit school and show his 1-1 but no. I'm to take ds to hospital for sessions and they are having no contact with school other than sending a pack through the post

This isn't until March either until a 4 week slot is free.

I sound so ungrateful I know!

Just annoys me he is fully entitled to speech and language therapy but I have to go to the ends of the earth to get him a total of 2 hours worth! Still better than nothing I suppose!

I've phoned 3 private salts who would have to travel, seems nothing is local but since we live in the sticks for support I'm not surprised, 2 of those private therapists are full 1 of those also charged £100 per 45 minutes which is insane and the 1 that isn't full took 6 weeks to get back in touch and then rushed me off the phone told me she would phone me back on the Monday when she wasn't so busy and never called me back, so gave up on that!

3 nights this week ds has been up for hours. Last night woke at 10pm was awake pissing about until 1.20 this morning. I'm sat with him the whole time to supervise, bcos as soon as I lay him down and try to leave the room his sat back up playing and being naughty.

I have to lay with him to get him to sleep every night anyway.

This is next on my to do list settling self to sleep.

How can I do this though when as soon as I've layed him down he's out of bed throwing toys trying to climb over stair gate climbing up on windowsill which he has fallen off and split his chin open which needed a trip to a&e! Really can't trust him.

Need to sort it out though as it consumes my whole night x

That's pretty rubbish danni. At least they are giving him something but I don't understand why they would make you go to the hospital rather than supporting him in the school.

£100 for 45mins is crazy, we weren't even paying that in london! I hope you manage to find someone who can work with him.

Hi Mamapants, hope you are having a nice run up to Christmas!

That does sound frustrating danni. You don't sound ungrateful at all. It's an investment that should pay off in less support they have to pay for your DS in school but there doesn't seem to be that kind of joined up budgeting. I know from OH's brother, who is a child psychologist in the NHS, that anything that is not immediate/life threatening/essential is being pared back to the bone, even though it's sort sighted as it will cost more later to fix the problems caused by e.g. lack of physiotherapy, CAMHS and all these other "preventative" types services. Sounds like you are very clued up and doing all the right things though, so it may well be that they wouldn't be doing much that you are not doing anyway.

I had another thought on motor skills for handwriting. DD really enjoyed doing those Kumon mazes before she could write - it is motor skills but a bit more motivating than writing and less constraining (DD used to zoom her pen all over the mazes but when she got to a dead end double back on herself - but the fact the walls were there and she was trying not to touch them with the pen still meant she had to do some pen control, IYSWIM - but without the frustration of the letter not looking how she wanted it to). She also likes tracing letters rather than having to write the freehand. The other thing I wondered about was stickers? DD loves stickers and I do still think there is a fair bit of fine motor control in placing them where you want them - but you can create something that looks good even if you don't get it spot on, so again it's a bit more motivating than drawing/writing if you find motor control difficult I think? DD also liked the Kumon cutting out books (must get it back out again actuallly it's just been in the cupboard).

Right, I will stop sounding like a Kumon salesperson now and get back to work!

LightTripper looking at my ds and dd, they present so differently. This could be partly other factors of course,but i suspect also to do with gender. DD is much more of a conundrum, whereas DS is an almost textbook example of HF autism.
She is desperate to go in full-time after Christmas, so we are going to play it by ear.

danni0509 no EHCP as yet. School are a bit hit and miss when it comes to official SEN stuff, great at support but not so much the procedures. As soon as we have had her first stage assessment done we will take that evidence back to school and meet with the SENCO to hopefully get the ball rolling.

livpotter we have a visual timetable set up for her and will continue to use it over Christmas. But it's hit and miss as to how well it works.

Thank you so much to everyone for the warm welcome here. I am so so relieved to have found you. This term had been the hardest of my life, and I have two older children and spent 10 years working in very tough inner-city secondary schools, but nothing has compared to this.

Hello all, I just wanted to say a little hello. I’m new ish to mumsnet, but I found it really encouraging to read all your experiences. My DS is just about to turn 4, so he’s starting revelation next year but has started school nursery this year and sometimes it feels like it’s proper school as the units are joined up. He’s not officially been diagnosed, but I am fairly sure he’s on the spectrum, and the more verbal he gets the more able he is able to describe his wants and frustrations which are incredibly rigid and inflexible thoughts. I’m a SALT too, and actually work with children with autism as well as diagnosing school age children (sorry Danni - sounds like an awful service you’ve recieved - we’re not all that bad!)

@Danni0509 you might find the elklan language builders resource helpful. They have a very readable book on supporting children with verbal asd, you’re very much describing difficulties with his functional understanding and levels of abstract questioning, if you read up in “blank language levels” you might find some helpful ideas and strategies on how to develop his understanding of questioning. I’m not sure what the SALT has in mind, but 30 minutes in acrabfom clinic away from his natural environment is not necessarily going to be helpful. I think it’d be much more sensible to spend the two hours with you and school demonstrating how you can integrate therapeutic approaches into your everyday rather than whip out some flash cards. There’s a great website called “teachmetotalk” which has loads of advice and explanation on things like echolalia.

We’ve been battling through quite an emotional time with all the routine changes that Xmas brings, can’t wait to get back into the normal routine! He was the only one who refused to wear an outfit for the school nativity, sat and sucked his thumb throughtout until in one song he randomly picked up a triangle and started playing away. He’s got weirdly perfect rhythm, perhaps one of those quirky little strengths. I was so proud and nearly burst into tears!

Welcome @Jeb86

Dh is on a work trip until Sunday. He is so much better at getting ds to sleep than me so last night ds got 4 hours sleep and I got 2. He's been biting the wall in his bedroom again too so we now have more holes in the plaster again.

Hi Jeb. That's so lovely about your ds playing the triangle! Mine didn't wear his costume either.

Ellie if it makes you feel any better my ds has taken most of the paint of his bedroom wall too. Thankfully it goes in phases, so he hasn't done it for a while but also no point in redecorating yet either.

Choccy I hope the school are helpful in getting some official support in place. My ds wouldn't be in mainstream at all with an EHCP.

It's Ds's last day today. So looking forward to not having the drama of taking him to school everyday but slightly worried about the disruption to routine over the holiday.

@Jeb86 thank you so much for your reply I will definitely google the tips you have given very helpful Laura mize from teachmetotalk is amazing I've been following her website for 3 years now she is very good at what she does. Thanks again. Xx

Ds has had a cough & snotty nose for about 3 weeks now, they always linger on for weeks and weeks in the winter and as I predicted he woke again last night early hours shouting mummy so I went in and he was burning up I could of fried an egg on him! Had to get some calpol (he calls calpol 'Simon calpol') he actually asks me for 'Simon calpol' when he is poorly 😂 he genuinely thinks it is called Simon calpol so funny!

He's only at school for 2.5 hours so I sent him in being the last day as his temp was gone by the time we got him dressed, his teacher said 6 children have phoned in sick today so must be going around.

X

Welcome Jeb. DD was very anxious about any school performance at Nursery but for this one, although she was still clearly anxious on the day (stood turned sideways looking at the piano for the first couple of songs and didn't come out front to say a line like the others) she didn't seem at all worried in the run up at least, and actually was really enjoying singing all the songs etc. at home... so hopefully with age his "triangle" moments will increase! It is amazing though how much joy you get from those little triumphs isn't it?

Work finishes today ... final run in to Christmas. Everything wrapped as we are heading off on Saturday to visit various family and won't get much chance. Can't wait to have 10 days (hopefully) properly off!

After the performance I went round to pick him up in his classroom, where he proudly put on one of the hats (which before you’d think we’d asked him to pour lava on his head) saying “look mummy I wearing a hat!” The next morning I hear him singing every single word of all the new songs they had learnt for the performance in perfect tune! I’m hoping that as he matures he’ll begin to be able to cope with doing things when people ask...he’s so capable but it’s so hard for people to see what he can do because he can be incredibly oppositional. His stick response is “no!” But sometimes he warms up to things once he’s watched a bit and seen it looks quite fun. Just hoping and praying for some patient teachers along his school journey who will give him the time.

It’s so lovely to hear about other people’s little triumph proud mummy moments, keep them coming!

I also love Simon Calpol
Does Calprofen get a special name too, or is only Calpol a special friend?

Simon calpol - love the name. I love how “normal” these little terms become in families. For the longest time our ds called the tv “George”. We don’t know why, but he just suggested in his echolalic way “would you like to watch George?” Aka - get the telly on mum! We got so used to it we stared calling it George too!

Simon calpol

I just find my boy constantly surprises me - their class party was all day yesterday and apparently he was brilliantly behaved, he was tired at home but very compliant and just wanted snuggles with me, this morning he woke up asking to do his reading - who is this boy?!

Tomorrow is another challenge - he has been going to gymnastics classes for a year now and really enjoys them (he has v delayed motor skills but he still seems to enjoy it) but a few weeks ago they
announced that they are doing a show tomorrow. My boy insists that he wants to do it but during the dress rehearsal last week he kept adjusting the placement of the other children's umbrellas - they're dancing to Singing in the Rain. I feel like knocking the performance on the head but I don't want him to feel like he is missing out - he has an excellent memory and can really hold a grudge!

Well thank goodness that term is over! Feels a bit deflated as the teacher and 1:1 approached me this afternoon to say that ds had been repeating the word 'idiot' over and over today. I doubt it but without hearing what he said I couldn't tell them what it might have been.

They've also organised a theatre trip for the class next term and want me to come to supervise ds. I have no idea if this is a good idea or not. Going to have to mull it over over Christmas.

I live Simon Calpol. Ds used to name all colours after spongebob characters, I miss that phase.

Hope you ds is ok tomorrow dimples!

There have been so many posts, I’m going to struggle to get through them all!

danni I’m sorry your SALT assessment was so rubbish. I’m glad they’ve subsequently decided to provide some sessions but it’s madness that they aren’t in school and that they don’t seem to want to see him in that environment. When I took ds to the SLT drop in in June 17 he had only asked his first question two days before - what is that? He now asks what, where, who but not yet why. I read that why is the hardest. I’m sure he’ll get there eventually but it has taken him a lot longer than NT children. Hopefully your ds will get there in the end too.

Most of the children wrote their own names in Christmas cards with varying degrees of legibility. Some wrote ds’s name too. Ds is still not really interested, sadly. Light I ordered one of the maze books you mentioned. He likes doing mazes in magazines, we make a game of going the wrong way first, so it may interest him, for a short while at least.

ellie welcome, I’m glad you found us.

dimples I’ve found these threads very supportive too. I’ve learned a lot and heard lots of good ideas and tips so thank you to everyone

liv well done to your ds and his TA . It’s definitely worth trying the headphones. We have the Kidz (?) ones though ds doesn’t wear them. It would be good to let him get used to them before he goes back?

Choccy welcome, I’m sorry your dd is finding things hard. How do the school react to the things she finds hard? Are they happy to let her skip assembly etc. or do they try to get her to attend? Ds didn’t attend assembly or eat in the hall for most of the first half term but he then decided he wanted to. He does have 1:1 support which helps, obviously. Does she have anywhere quiet she can go when she is overwhelmed?

Light ds seems to love going up to get a prize! But he didn’t want to do the nativity play, so figure that one out. I’ve not seen it myself yet but he’s been up three times now: a good work certificate, the maths trophy and when he started going to assembly they gave him a little trophy to reward him for it (he’s obsessed with the trophies, one in particular). There was a photo in his learning journey book of him with the little trophy and he had the biggest smile on his face, it’s so beautiful. Anyway, it’s great that your dd’s school know what she can and can’t cope with right now, she gets the recognition still which is important for her.

Welcome back mama, merry Christmas to you.

danni sleep sounds exhausting. Have you spoken to anyone about melatonin yet?