Auties transition to Year 1 - thread 3

[LightTripper]

This is the continuation of the thread for parents and carers of autistic children in reception year at school, going into Year 1 in the autumn. All welcome (also parents with older or younger children who want to ask questions or share their wisdom!)

Welcome!

Thanks for everybody's feedback on their own autistic traits/diagnoses! Most of the time I just feel curious, rather than really "needing" to know. But then I do wonder if DD might find it useful/reassuring. And somehow that comment from my online friend unsettled me a bit - and maybe that would stop happening if I just knew one way or the other. Hmmm. No rush anyway, doubtless I won't get around to anything soon!

Really glad DD had a good time @LittleSwede! My DD also loves discos etc. but doesn't have much capacity for them (she loves to watch, and will run them at home for her and DS and maybe one friend - but when we are at a really loud party or went to the kids disco on holiday she just watched ... really loves it though, and talks about that stuff for ages after!)

@Harleyisme I just have no words for your DS's school. I don't know how you stay as calm as you do - you are amazing! Do you think the incontinence nurse would consider going in and showing them what they are supposed to be doing to support him? I mean, I know she shouldn't have to - but they just seem totally ignorant of encopresis, constipation, interoception/sensory issues, communication issues - just anything relevant really!

Hope everyone is having a good weekend. We had a pretty good day. Went on the Brexit march which DD enjoyed despite us being idiots and forgetting her ear defenders. Then came home and did her main holiday homework with zero complaints (even though I thought it was hard!) so feeling pretty pleased with that. FIL is here this weekend so we need to find something to do in the morning, but I think we may keep it very simple and just go to the park or something like that!

@LightTripper The incontinence nurse has spoken to school and explained everything to them. She has offered to go into school but has explained that normally they don't send things to school or go unless they do soemthing which is not normal and unsual. The school don't trust me at all becuae of me asking if they knew where the bruises came from last year apparently thats there excuse not to communicate with me as the staff feel vunerable to my accusing them of things. To be honest it all makes me sad as at the end of the day theres a 5 year old little boy in the middle of all of these who doesn't massively understand that they refuse to communicate with the adults in his life proeprly. I haven't sent the ehcp request off yet and i am glad i haven't as i am going to be rewriting it to come from the school are failing my child angle as they are. They even asked his incontinence nurse what my plans are for ds as they weren't willing to communicate with me and that they also keep going on about why hes soiling so much even though me his incontinence nurse and the lady at la explained it all to them. It is very very clear that the school doesn't have the expertise nor training to handle any of this and at the end of it all my ds is the one that is suffering.

Harley I just don't know what to say, it's just absolutely awful the way your DS (and you!) is being treated by the school. They have no idea and have no interest in what is best for him by the sounds of it. It feels as if they aren't even adhering to basic rights such as every child having the right to feel safe (a child being left to soil himself is not my idea of 'safe') and thrive at school.

Light glad your DD enjoyed the march. I was watching Sky News yesterday and my DD's comment on seeing the MPs and PM's 'debating' in parliament was "that is a school for grown ups mummy" not quite sure what she meant by it! Tried to explain what was happening I simple terms but not sure how much she took in...

DD has been talking about the disco a lot. I like the idea of a small disco at home with just a couple of friends or her cousins.

Hi everyone sorry struggling to keep up with the thread! @Harleyisme that's appalling of the school, hope you can get more support on place soon.
@littleswede sounds like my DS, loves the idea of discos and parties, then when we get there gets quite overwhelmed but then talks about it for ages afterwards!
@LightTripper glad the March went well.
Our latest thing is that our corner shop has bats and ghosts cut out and put on the windows. It is all DS has talked about the last few days!!

Oh Harley it's not good enough is it.

Light I'm impressed that your DD coped well with the march.

We still have a week to go until half term. DS is exhausted. It's going to be a fun week!

We did the March in a very chilled way. Joined at the back, late. Marched down Patk Lane (Detouring off to avoid a loud music station) and then went home at the bottom end. So it wasn't too overstimulating probably. Nothing like the bits you see on the news!

We've had some tricky behaviour today from DD and her friend who came for tea. I think they are knackered from half term!! Glad we have a break this week. We are going to try to take Friday off and maybe go to the zoo which is near my parents.

Lottie sounds like your DS is excited about Halloween then!

Dimples we also have another week to go... Although DD is home sick today as she's had a heavy cold and cough over the weekend. Today she was meant to be on a 'trip' which basically involved a 1,5 hour walk around the village. I would have gone with her but it just seemed too much when she's all full if phlegm and looking all pale and tired. She can't manage walking for more than 20 minutes without sensory seeking anyway (which involves nearly pulling my arm off!) So seemed a good idea to keep her off.

Light hope your DD enjoys her week off and has a chance to recharge. Zoo sounds fun!

Hope those who are off this week have a good one

@LottieBalloo sounds like your ds is excited for Halloween. My ds loves halloween. He actually prefers it to christmas.

We are on half term to.
@dimples76 it isn't good enough is it. The school need to support ds properly.

Arrrggghhh what do i do? Ds is now fine toileting in the house but going out the house hes permanently wet. We went to a group today we were out for 3 hours i took ds toilet 4 times wach time he had a wee but still had 3 wee accidents while out. I don't know what to do?

Harley So sorry you and DS are having a bad time. When you took him out of school a couple of weeks back did he only had two soiling accidents in the whole week? What is the plan following discussions with Sendiass etc, was the plan for him to continue to attend this school but with more support or are you hoping for an EHCP and a move to another school? Its' so difficult to know what to suggest as you have tried everything and it is the school who are the problem.

@Littleswede the LA told the school to sort out a ep to review ds and other than the school making it clear the didn't really want him there and that they were struggling to support him. Sendiass said to give the school time to do as there were told to do to support ds. I am doing an ehcp request school won't do it as the say that the LA won't do it due to the fact they say that ds has to have very bad learning disabilities and meet at least 3 areas of need that apparently only children with very complex needs in every area are entitled to one now. But the LA lady cottoned on very quickly that i had made myself very aware of the law and what was and unlawful local policy.

Argh! D sis in law and her DH looked after DS today alongside their two DSes. She has all these rules, eg only one toy or puzzle out at a time, and now tonight DS was so confused and worried about getting his toys out! No one seems to realise how seriously he takes things! Also apparently she took him for a walk at 3.30pm, when hes usually knackered, and was shocked when he tried to run off. Yes...I did say...! She said she tried to tell him but he just thought it was funny, yes he doesn't really understand hes being told off unless you are very clear etc. We did say all this!! He seems to have enjoyed being with his cousins but this one toy at a time thing has really lodged in his brain!

Harley I now remember about the LA making out he wasn't 'complex' enough to get the EHCP (rubbish!) Sounds like you are on the ball though and set them straight on that one. What a battle though! Our LA are very stingy with EHCPs and they have no money attached to them for the additional support. or to you, whichever you prefer.

Lottie bless your DS, it's exactly the sort of thing that would get DD all in a pickle. Glad he enjoyed time with his cousins though.

Little I’m glad dd enjoyed the party while she was there. Ds managed half an hour of his, he was fine until the DJ started talking and then wanted to leave.

Harley I’m sorry your ds is still struggling. I’m afraid I don’t know what to suggest, it seems a very complex issue. Possibly anxiety related being away from the toilet at home. I wonder if a social story could help somehow. He needs a lot of reassurance and he’s just not getting it at school which is why it’s worse there. I wonder if a post in SN chat might elicit some help from ‘been there’ mumsnetters.

Light well done for going on the March, I’m glad dd coped well. What an omnishambles the whole thing is. it goes on and on...

Lottie a social story about different houses having different rules might help?

Sympathies to those of you not on half term yet. I hope the dc are doing ok.

We had a nice week of ds sleeping to a more reasonable time. The last 3 days we’re back to early starts: 3,4 & 4 again today. Otherwise ds is ok and enjoying his time off. I haven’t really planned anything though we have plans at the weekend so hopefully we can muddle through until then.

open glad your DS is enjoying his break and hopefully you'll have a later wake up tomorrow.

Had an urgent phone call from GP to say that DD does have a UTI (tests were sent to lab but when I phoned yesterday they said test came back negative!) and could I come and collect a prescription for antibiotics. DD is at school today so will have to start the course at 3:30 pm.

She was still coughing and sputtering this morning too and very reluctant to go in so am now feeling unsure of whether I should maybe keep her off for a day tomorrow to let antibiotics kick in. Poor thing might have had this infection for weeks as this constant weeing has gone since she started school. Previously the 'dip-test' for UTI at GP were all coming back clear but the lab must have picked up on something. Last summer she had a very bad UTI with 40 degree fever not responding to neurofen or calpol resulting in trips to OOH.

Oh poor DD! Although at least they have picked it up now, and you have an explanation for the accidents. Hope it clears up soon with the anti-bs!

@Lottie i would say a social story about differnt houses having rules is a good idea.

@Open i hope you have a good week with ds off and ds sleeps in a little later for yous.

@Little hope the antibiotics kick in and dd feels much better aoon bless her.
I spoke to ds's incontinence nurse and we are putting visual routines in place. She said if i ever feel the need to up his laxido to do so as he needs to stay on the runny side as he will make himself poorly with holding. She is getting concerned with his with holding behaviour and also the fact hes drinking less and less to avoid weeing. She said what we are doing at home is brilliant that ds.is likely struggling when we are out as he isn't transfering skills from enviroment to environment. She said school need to train him to and are likely to do so every year. She want visuals in place as she feels the verbals promts ds isn't picling up on properly when we are telling him what to do.
Ds also yesterday said give me a minute when i can't remember i say give me a minute they come back to me and it makes me sad as i still can't remember so i said what happens then he said theu keep coming back to me but i can't remember it makes me so sad.

@lottie your post made me laugh, I remember one of my friends telling me that I should just sit DS down and tell him that his behaviour is unacceptable to me. Ah bless those with NT kids, they just don’t “get it”. My MIL is visiting this week, we don’t see much of them but the kids were so excited, then out the blue they messaged to say they’d be late and to send the kids to bed. I messaged straight back with a very blunt reply telling them that DS1 would be very disappointed and would really struggle with the change to the plan- all of a sudden they were able to arrive at 5.30. It just makes me so mad when people think we’re making up DS’s ASD - they’ve got their head in the sand and it really annoys me!

Sorry. Another Ranty message - sleep deprivation! Ds3 (!) sleeps all day and wide awake every 2 hours!

Change is probably the biggest thing DD struggles with too. She can be alright with a bit of a warning and a run up, but last minute changes are really hard, especially if there isn't a reason she can understand. It seems so natural to us now that we need to prepare her for things and have a plan and stick to it (TBH that is very natural to me anyway and I also find it hard to change track!) that I can get really annoyed when other people try to switch things around last minute. Like in the summer when DD's friend's Mum decided to take her out for the day instead of going to the holiday club (that I had booked DD onto for that particular day mainly because her friend was doing it). I was initially really annoyed and upset on DD's behalf (that she at least hadn't given us more notice than telling us on the morning of the day): but it probably just hadn't occurred to her and at least she was aware enough that she told us, rather than just not turning up! I have to remind myself that it's just not on most people's radar.

You do hope for a bit more understanding from family though.... My parents actually did an online course on autism (I think it might have been Open University but it was free) when DD was diagnosed, which I think really helped. ... do you think your MIL would do something like that? I am pretty sure it was this one but can check! I don't think it was a big time commitment and the course overview looks good (includes views from autistic people, neurodiversity, causes, the spectrum, etc.): www.open.edu/openlearn/science-maths-technology/understanding-autism/content-section-overview?active-tab=description-tab

DD can seem very "normal" for want of a better word (well, I think so anyway, maybe I'm not the best person to judge!), so when she struggles with change or sensory stuff I think most people assume she's just being obstreperous and it's bad parenting. Honestly I would have assumed the same and been beating myself up as a shit Mum if we hadn't been led to her Dx.

And really sorry the sleep is going to pot again. DS is back to waking closer to 7 than 6 which is amazing. Got him a Groclock and got it out this morning so we'll see if it works (he seems very interested - and because he's (probably) NT he may be more suggestible!)

Anyway, here are some more sleepy vibes, for what they are worth...

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z-z-z-z-z-z-z-z-z-z-z-z-z-z-z-z-z-z-z-z-z-z-z-z-z-z-z-z-z-z-z
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@light - I’ll definitely check that course out, might look through it myself and then see if it’s suitable. I think MIL would like to learn more about it and she’s quite okay for me to tell her how to manage DS in games (e.g that she has to do a countdown before finishing the game).

We’ve got our first parents evening tonight, poor school got the ofsted call on Monday and they’ve had the inspectors last couple of days. We found out almost by accident that they’re putting ear defenders on ds on a regular basis but they haven’t asked us. We’re frustrated because he doesn’t have sensory needs, he’s much more challenged in his socialisation and rigidity. So we feel that by him wearing the defenders they are creating further barriers to his socialisation because he won’t be able to talk to other kids or play games at dinner. We also have worked hard to help build his resilience to things he finds challenging, such as noisy hand dryers or changes to routine, by coaching and talking him through things, allowing him to be exposed to things he finds hard so that he can learn to cope rather than allowing him to avoid everything that’s tricky. I’m a bit emotional what with early baby days and sleep deprivation so I’m a bit worried I’m going to burst into tears with the teacher whilst attempting to explain it! Or just go into “professional” mode and lambast her which isn’t great either.

Anyone else dealt with this kind of thing? It feels like school have said - ds has asd, therefore we must implant every asd strategy known to man on him.

Light that course looks brilliant, thanks for sharing!

I'm sorry that sounds frustrating jeb. I do find with ds that taking away one sense can sometimes help him to process all the other sensory information better. Do the school think it helps? Maybe there is an alternative they can use that would be better? I always find if I'm annoyed with how the school are handling something I have to go in with alternative ideas or I just get angry with them instead of constructive.

I have been reading through the messages but we are away and we have been having a pretty challenging time of it with ds. Including a 3.30am start today (how do you do it open?!?). He seems a bit more relaxed today as we have just let him do all the things he likes including watching endless Miniforce X (the world's stupidest TV show!) and dh has taken dd and the dog off for the afternoon. Hopefully no more meltdowns this week 🤞

Glad your dd had a good time at the disco littleswede. My ds would've lasted about 10 seconds!

Sorry things are still difficult Harley.

Finally got round to printing laminating and put up ds toileting routine and washing hands routine. Ds has had a very positive reaction to them so fingers crossed ot all helps.

DS really struggles with last min changes too. When I talk to my friends with nt kids, it makes me realise how little most people plan their time and manage expectations compared to us! But then, really, DH and I have always been a bit like this!!

www.bbc.co.uk/news/education-50140141?fbclid=IwAR0ipEHnZSqCpOcVdr5Mo4RQChCznuYRYL1UuXBtbeU2zPayAfMsFxhzyrg

Hope the link works. Here's a BBC news story about the SEND report that has just been published. I really hope that it makes a difference!