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

Light he's got an EHCP that's what's pissing me off the most.

He had 1-1 in nursery he couldn't attend without one, and his EHCP was applied before well before he started school as everyone involved knows he has to be continually supervised etc etc

School actually gets full time funding for him. X

Open he has a quiet area. He has his own table and chair and activity boxes it has his photos on so he knows it's for him, a small section of the class is his area. They have a sensory room he uses with his 1-1 each day, he does most of his work out of the class room just him and his 1-1 as his reception is a 3 class unit which all join together & it's manic so he's often taken to quiet area to get him to concentrate / calm down. He does some class work, usually song time and snack time but I think that's about it. He is very active so they do a lot of outside work in the woods him and his 1-1 (they have there own woods! lol.) counting things, finding hidden letters, in the sandpit and water trays etc etc they do put a lot of thought into his activities to be fair to them.

Sorry your ds sleep is poor, my ds was awake at 4.10 this morning and by tea time I'd had enough of his incessant whining, was so pleased when I heard him snore at bedtime.

Liv I'm sorry your ds has ear ache, my ds is full of cold again he said yesterday what's up with your coat take it off it's poorly whilst trying to take his own coat off, no idea what he meant! He means something's hurting him and his nose has been streaming so gave him some Simon calpol earlier

I have a number for a SN place to phone regarding school hours situation it's part of our LA so I shall keep you updated when I've spoken.

Although ds is 5, he's only turned 5 January so compulsory school doesn't start for him until end of April when they go back after Easter so I think school can insist on whatever hours they choose until then so I'm being told.

Liv - I hope that DS is better soon. I had to keep DS off school Mon-wed as he had a high fever. i was worried that I had sent him back too soon but when he ran away from me at pick-up I realised he was back to his normal (albeit rather snotty) self.

Open I hope that you get more sleep tonight and that things are better at school tomorrow.

Danni - I really feel for you. I agree that you can't accept their proposals - it is really hard to see how your son would benefit from their plan. Have you complained to the Council? I found SENDIASS pretty useless but I think it's v area dependent. I found the IPSEA helpline really great - it's hard to book an appointment as they get snapped up as soon as they're released - i made my booking at 2am.

I just got a message from school to say that on the first day back after half term they are having a visiting musical theatre company visiting with performances and workshops all day. This sounds like an absolute recipe for disaster for my boy, he does not cope very well with changes to the school routine and live performances like this are way more than he can cope with. I think i'm going to write a little note to his teacher and 1:1 - they always want to include him in everything but I think that this would be far too difficult.

Sorry about the bad sleeping open and the earache liv.

danni I would have been fuming at that letter too and those new hours are just ridiculous. The cynical part of me says they have suggested something they know will be really hard for you and your ds so you give in and agree to the original mornings only.

We got a letter at parents evening saying that ds isn't reading enough at home according to their records with the usual guilt trip about how 5 year olds who read for 20 minutes a day get better results in their GCSE than those who don't and various other similar statistics. All fine except we do ds reading at least 4 usually 5 times a week and write it in his reading record. He can't read himself and I quite often end up reading the book to him while he spins round or tries to stand on his head but it gets done.

I said to the teacher at the meeting last week that he wasn't reading the book himself and she said it was fine, just keep reading to him. I'm wondering if school have put ds on a list of children who don't read at home so if he doesn't make progress they can blame it on us. Hopefully I'm just being paranoid.

Ellie it sounds like he's just not ready for reading yet - there doesn't seem a huge amount of point in keeping a record of you reading to him. Perhaps you could just put a note at the end of each week DS has been read to each day but has not read to us - they do not seem to be making adjustments there for SEN and the letter which you received doesn't sound great either.

I hope you manage to get it sorted danni, it must be very frustrating for you at the moment.

Dimples I have no idea why they always seem to organise things on the first day back! Absolutely the most challenging time for our kids to take new things in.

I would ignore that letter ellie, like dimples said it doesn't sound like they are making adjustments. Also your ds's progress will almost certainly be different from NT kids, so putting the thing about GCSE's isn't very helpful at the moment. Ds can't read yet but we make sure he has plenty of books around and that we read to him every night.

Ds has an ear infection, now on antibiotics. Otherwise a little perkier than yesterday.

I had a sad moment this afternoon, I’m still dwelling on it a bit. Ds and I were walking down the road after school and a boy maybe a couple of years older said to me that ds had something wrong with his brain and that’s why he messes about. I wish I could protect him from the world.

I'm sorry Open that sucks! Did your ds notice?

I don’t think so liv but who knows how much he takes in. At some point he will understand. The thought of children saying things like that to him in the playground makes me feel sick. I spoke to his mum about it, I was a bit nervous but they had parked near us anyway. She said that her son had adhd and she was a bit apologetic. I shall be writing an email to the school to ask what they are doing in the school to promote a positive image of those with differences, neurological or otherwise.

The reality is though that this sort of thing is going to happen. I just have to work out the best way to equip ds to cope with it emotionally.

You're right, it will happen and all we can do is prepare our kids to deal with it. It's still rubbish though and heartbreaking to hear.

I think it's a good idea to talk to the school. Ours has done autism awareness this half of the term, which having spoken to other parents has been pretty successful in helping the NT kids understand a bit more about it.

Oh Open that's tough. I agree speaking to the school is a good idea. I think it's one of the hardest aspects of parenting - having to accept that there's a lot we can't protect them from.

How did you feel about the autism awareness? Ds doesn’t yet know about autism or that he is autistic. I’m not sure how I feel about autism, and by extension him, being singled out rather than something more general. What were your thoughts on it?

I’m not trying to be critical btw, just trying to work out what’s best for him vs my own feelings.

danni our whole school were emailed a letter from the county council regarding attendance and lateness. Probably part of some larger government initiative.

Open ds doesn't know he has autism or what autism is, he wouldn't have a clue, he is so oblivious to anything so I don't think I have to worry about explaining anything like that to him for a good few years yet.

Sorry to hear about today, bless you.

A kid at soft play called ds a weirdo last year, kid must of been around 7 or 8 old enough to know better anyway. Ds climbed up the slide instead of going down it and the other kid was at the top waiting to come down, I said ds move, of course ds climbed up higher, and he was making his noises what he makes when he's excited which often turns heads, so as I went to get him off the slide so the other one could come down, the kid said move out the way you weirdo. I said ds stay were you are. Little brat can wait then the kid went away and came back with his bratty little mates and they were laughing at ds flapping, like full on taking the piss and mimicking his flapping. Good job i follow ds as he would never know someone was being horrid to him. Scary how vulnerable he is.

I said to group of kids, what's so funny? Is there something funny? What are you laughing at? Where are your parents? And they all ran away.

Nasty little fuckers!

Today at the park ds insisted on going in a baby swing. Dh has a few days off so came too, we took the ball & scooter but ds just wanted to swing in the baby swing, his feet almost touch the floor and he's way too big for it, but it's what he wanted to do so dh was pushing him and I've never seen him so excited, he was making his noises and being v loud, just excited that's all, two other families on the park stood gawping at him like ds had two heads, so dh swung him higher and ds got louder 😆

X

I thought it was good to raise awareness with the children and other parents. They did a special newsletter about autism and did workshops for parents alongside school activities. I spoke to a parent of an older child and he used it as an opportunity to tell his classmates he is autistic, which was really positive for him.

Currently ds wouldn't have a clue what was going on, but if it helps the kids in his class be more understanding of him then that is all good with me. We use the word autism around ds but I don't think he has any idea what it means.

I think our school has a very higher percentage than average of autistic children so that's why they focussed on it specifically this time. They also have an inclusion week every term.

Sorry for the appalling grammar!

I'm sorry that happened to your ds danni. My ds wouldn't have a clue either.
It's wonderful he had so much fun on the swing though!

Thanks liv, food for thought. I will compose a measured email to school this week.

danni I’m sorry. These moments stay with you don’t they? We had something similar last summer. We went to a farm park on holiday and ds was on a jumping pillow. He was having so much fun running around and singing and talking to himself. Dh and I were watching him and a group of four 9/10ish year olds clocked that he was a bit different. They were making fun of him between themselves and them going up to him and trying to get him to do things. I was about to step in and give them a piece of my mind, including asking where their parents were, but ds decided he was finished and came off. He was oblivious, thankfully, but I won’t forget it. They were old enough to know better.

And I’m glad your ds enjoyed the park too!

How's half term going?

I was at work today and my Mum was looking after DS. Back home this evening when I was giving DS a bath he said 'Granny lost me, she left me at xx's (my Mum's neighbour's house). I messaged my Mum and it turns out that the story was partially true but it had 'slipped her mind' when I collected him! Apparently she was chatting to neighbour at neighbour's house and he went off to explore the rest of the house, then they heard the back door open and so my Mum ran out and was shouting up and down the back lane only it turned out that after opening the door my boy had gone back upstairs.

I think my Mum has a bit too much confidence in my son's capabilities - he has so little awareness of danger and can be (mostly unintentionally) destructive I would never let him wander around someone else's house like that. My Mum is looking after him tomorrow too. I am going to remind her that I always keep our house locked so that he can't just wander off ....

On a positive note my boy was excited to practice his reading this evening!

My mum often looks after DS and there are times I worry that she over estimates his abilities. It can be really tough to help them get the balance right when we're immersed in it all the time. We're with in laws for half term and will have similar worries though we've only recently shared the diagnosis so I think they'll be hyper sensitive.

Apologies again for being quiet recently. DS's lovely 1:1 is now on long-term sick leave so we're dealing with lots of emotional outbursts and an increase in restricted/repetitive behaviour (lots of flapping, echolailia and asking us to perform particular scripts over and over again) which is exhausting. His temp 1:1 is nice but not very clued up on ASD which prob isn't helping. I'm going to set up a meeting with the SENCO after the hols to see they can give her some training.

We've just been on a 3 day post diagnosis course run by our local CAHMS (with sessions from local SALT, OT, dietician and psychologist) which was useful but intense. We had the youngest DC there and lots of the parents had just had children diagnosed at 9yo+ and were dealing with school refusal and MH issues. Totally heart breaking and while I hope early intervention will help DS, so many parents had issues with secondary schools (really inflexible behaviour policies, no classroom adjustments made)that DH and I are more convinced that homeschooling will be our backup if things go wrong. It's years away but felt v real speaking to other parents. Anyone else already catastrophising about secondary?

Thank goodness your ds mentioned it dimples and you can give your mum a refresher. Hopefully she’s learned a lesson from that and will be more careful in future. My parents mostly leave their front door unlocked and I have to lock it when we go there. One day last year my dsd left the door unlocked after popping out and ds later opened it and ran off down the path. Luckily both I and my dsd saw him. I just tell them if they don’t take these things seriously then I won’t be able to bring him around any more. Bit different when they are your childcare though.

Sue I’m sorry your ds is stressed out by his 1:1 being off. Our ds’s teacher didn’t want him to get too dependent on one TA so has had him spend blocks of time with 3-4 over the day but he still favours one and gets stressed if she doesn’t meet him in the mornings. There seems to be no easy answer to it all.

I’m not catastrophising about secondary yet but I’m starting to worry about Year 1 and the change to more structured, desk based learning. I’m also thinking we need to start planning our EHCP annual review? I’ve no idea of the process, nor how long it takes. Does anyone know?

All ok here though early days. We had a play date yesterday morning and in the afternoon my parents came round but ds spent most of the time in another room. He’s often like this with both sets of gp’s, anyone elses dc like this?

We have had progress though. Ds has started to ask why questions which is great. The first one I heard he asked dh why he was putting those toys there. Previously he would have said something like daddy, what are you doing putting those toys there. Last night he asked me an abstract question - why do we say we open boxes. Pretty great I thought. On Sunday he also had his first ride on one of those children’s sit in things. Previously he’s not liked the noise so will only sit in them without turning them on. He stayed on for about half the ride then got off.

Sleeping improved as soon as school finished. He’s sleeping until 5 which is a major improvement.

Open I hope that the improved sleep continues!

That sounds very stressful Sue - I worry how my son would cope if his 1:1 was off. At the EHCP meeting the EP stressed that more than one person should be doing the role but since then the head of EYFS has gone on maternity leave and the Senco has changed too.

I am mostly worried about next year - my son seems to love school.apart from when it involves sitting at a desk, especially hand writing.

DS's annual review is due in April. I am not really sure what to expect either. I imagine that the plan would be that DS's TA stays with him next year as she recently went all through infants with a child but then the move to juniors (same school) was awful). I was going to see if current TA could do 1/2 or 2/3 time in Year 1 and someone else support him the remainder of the time.