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!

Hello every i am wondering if i could join yous. Ds is going into year 1 starts back tomorrow. Has a diagnosis of ASD.
Hes struggled though the first year. Anxiety and masking have been the biggest issues. Hes terrified of going back hes not slept for 5 nights now and is very volatile. Last year was so hardbas he was only diagnosed a few weeks ago and we were meet with we can't do this ornthat has hes not diagnosed. Hes now been diagnosed but everyone's now discharging him ans saying he will just jave to out up with it as its his autism. He doesn't have a ehcp health particular hos bowel and bladder nurse say he needs one due to the amount of support needed for just his toileting but we get told as his academics are ok at the moment he won't qualify school did put intervention into everything last year to get hkm though but last year they had more ability to do it this year they have a class teacher and 1 ta. I am still awaiting from a email back from senco to ensure they can meet his toileting needs. Also insiting on a communication book as i need to know everyday how often hes changing if hes managing toilet and a general idea on how hes been. The school is very insistent parents shouldn't talk to teachers before and after school and should book meetings to discuss if they need to.

Hi Haley and welcome to the gang!

School sound very rigid, which must be stressful for you and DS. They need to meet his needs so a communication book sounds a very reasonable way to do that if they are refusing to give you access to the teacher before or after school. Even without an EHCP there should be a lot they can do.

Have the school still said that they won't apply for EHCP even though he now has a Dx? I believe it's possible to apply for one yourself if the school refuse: others here will know more about that (we don't have one!) or look up to see if there is a local branch of SENDIASS or SOSSEN as I believe they can also help you through the process.

If you Google for your local authority name and "Local Offer" you should find a page of resources that are available more generally: there may well be local parent groups that could also advise, and maybe some other resources or groups that you haven't heard about (even though we got given a big pack at diagnosis I found that there were some things on the Local Offer page I hadn't spotted or hadn't seemed relevant at the time but later did).

Sorry if this is all teaching my grandmother to suck eggs, but thought I would mention in case you had not come across these things!

Hi Furry - glad things are settling down at home! Holidays are hard but I always think that's me as much as DD. My anxiety really seems to be getting worse with age and I much prefer to be at home (or at least, I enjoy holidays in retrospect but find them quite hard work at the time!)... so hard to tell what is DD and what is me really.

I'm not sure about the curiosity thing as I'm not sure what is "normal". I certainly don't notice DD's peers being super-inquisitive about us, for example. DD has started to ask questions to people she is very familiar with. I do wonder whether (to the extent that it's true) it's partly sensory: if the immediate world around you is shouting at you (and often fascinating) maybe there's not so much ability or inclination to look any wider than that?

We are back on Thursday too. DD seems fine about it so far but we never really know, so we'll just see how we go. I'm quite looking forward to getting back into more of a routine, though I know I'm coming up to a very intense couple of months at work too, so that's probably colouring my expectations/anxiety more generally. DS starts pre-school in January and has loads of words now (though still mainly individual - but the odd pair coming in now too) - time just seems to be whizzing by.

Sorry about the car danni. Ours is going in for MOT this week. So far it's never had anything expensive need doing (it's 5 years old but we've only had it 2) but it's parked on street and we don't drive it that much so I'm always half expecting to be told something is wrong!

Sorry, Harley not Haley!

Thank you @LightTripper. Yes school are very rigid and not willing to bend a little at all. They are assuming because he had suspecred asd (now officailly diagnosed) that year 1 will be the making of him as its all structure and routine and thats not exactly how ds works. Hes so anxious that he has to have control so how and finds school he has no control. They have a very one few of autism if that makes sense and thats not how it works. Theres alot of blame on me has i have a anxiety diagnosis and as well as a autism one so they say with the anxiety he feeds off me but my anxiety is completely different to his and i even spoke to a physcologist about it who said it can't work like that.

I have applied for a ehcp beofe we got refused a d at tribunal we lost as the judge said it was evident my ds has sen that they weren't sure at the time what support ds would need.

I suspect it's the opposite Harley: I have some autistic traits and I always think they make me a better parent to DD as I can feel better where she is coming from when sometimes she finds it hard to express/explain it IYSWIM!

I think lots of schools have a very much "one size fits all" view of autism. My DD is also anxious and needs control. She actually does OK without a 1 to 1 at school (so far) but I know that her teacher does "get" her and will tweak things so DD can do it if she can't do things the "standard" way. It's very tiny accommodations but they just find ways around problems and make sure to communicate their expectations and what is going to happen very clearly, and listen to DD's questions and try to explain the logic of everything: it makes a huge difference to DD (who will move mountains to do something if it seems logical to her - but will generally simply ignore a request/demand that isn't explained!)

Might still be worth contacting SOSSEN/SENDIASS again, to see how long you would need to leave it until you try again for EHCP? Maybe after a term when his needs are more apparent? Can you make a plan with the SENCO to map out his struggles and needs over the next few weeks as he settles in, and then see to what extent the school can meet those before making a decision between you?

Yes i agree i think i just get him better. School are very difficult and to be honest don't seem to like to communicate with us. In the transition meeting we had with his new class teacher before the holidays she told us if she had any issues she would discuss it with is last teacher as she knows him better. But thing is they dont otherwise things wouldn't happen like a month before they broke up ds came out hysterical as he hugged and kissed a little boy to say thank you for holding the door open for him and the teacher sat him down and told him that was inappropriate but ds didnt understand and thought he was in trouble and was terrified to go back to school.
The senco isn't great to be honest as she defers everything with the praise i dont really know him or i will speak to his teacher the senco hasn't even spent time with him. She won't put anything in place that i or aprofessional suggest without speaking to the teacher and last year his class teacher moaned about having enough to do alot. The senco also likes to tell me its not her job or moan about the nhs making ghings her job that aren't supposed to be.

@Harleyisme hi Harley x ds school don't do communication books and I don't really find anything out even when he has an ehcp and a full time 1-1. One of his 1-1's does share info sometimes but not on a regular basis. Sometimes I only know he's had accidents when all the wet and dirty pants are in his bag. he has toileting accidents usually ever day. Sometimes several a day.

Also we don't see his teacher we drop off via the office to his 1-1, I see his teacher for twice yearly parents evenings that's all just like everyone else. I intend to mention this as I think a dc with complex needs like ds needs a bit more than that! X

@danni0509 i agree dcs with sen need full communication. My ds is just out of nappies and has a very strict toileting schedule i need to know all successful attempts and accidents everyday for his bowel amd bladder nurse . Also he doesn't have a 1 to 1 but cant go bathroom alone he needs reminding everytime of the toileting routine and making sure he doesn't flood yet anither bathroom lol.

Ds ehcp annual review is Friday, it was supposed to be the end of June but we where on holiday so had to be rearranged for when the senco could do it, so it's now end of the week.

What sort of targets have you got set for this year?

I'm not having the same as last years.

Ds to sit on a carpet square for 30 seconds or more, ds to explore a toy for 1 minute or more & ds to respond to his name (he could do all those before) I might aswell of wiped my arse on his last ehcp it was a complete pile of shite.

I only kept it as it was as he got the full funding for 1-1. But to be honest the 1-1 is more a baby sitting service he's just playing outside all day with very minimal work being done.

Early on this year I had a private salt if you can remember (which we no longer use) but I have a report from her that states ds needs intensive salt. How do I go about this? I want that providing via his ehcp. He currently gets nothing! Unless you count an nhs salt going in 20 minutes a year to review him.....

Also he's supposedly full time end of this month. Until the excuses come. So that shall be mentioned and included in his ehcp.

Just can't be arsed with another full school year of ds playing outside all day, being bribed with apple juice and sweets and biscuits to co operate and not learning even 2% of what the other children are learning.

I'm sure it's illegal to give ds sweets and biscuits and juice all day.

Which is what happens at ds' school.

Not happy about it at all, another thing for Friday!

He gets juice instead of water, they said he doesn't like water and they don't want him to dehydrate (hmm I remember being his mum? He drinks it here if nothing else is on offer) I don't mind juice at all he drinks it here but I don't want him drinking juice all day! he gets 1 biscuit for going for a wee and 2 for a pooh. (Even though he hasn't worn nappy for 6 months they still reward him for doing this) Then he gets jelly sweets for co operating and doing his jobs every job he gets sweets and then again for good listening.

One day his 1-1 said he's been to the toilet about 20 times today we've run out of biscuits!

Hmm wonder why he's been to the toilet 20 times

Before he broke up he was putting non edibles into his mouth a lot and his 1-1 said I couldn't get it from his mouth so I swapped him for a sweet, so then that same week every single thing went into his mouth (obviously for a sweet)

I do wonder why they can't see the problems they are creating!

All being mentioned Friday!

That sounds frustrating Danni. Definitely worth putting in writing what he can do at home, and that you don't want him having sweets or juice (or not more than X times a day or whatever). It's terrible for his teeth apart from anything, and it's not as if the dentist is sensory heaven!! It does sound like they are really underestimating what he can do, so good that you can put that all in writing and make sure that is part of the "baseline" that they are working on building from. If I were you I would write it all down (not emotionally but just very factually what he can do and what you've been working on over the summer) as a starting point - as they can't then claim they didn't know or it wasn't clear to them.

@danni0509 thats sounds awful. I don't blame you not wanting another year of this.

Ds went back to school today it took this years teacher and ta and last years teacher and ta to get hin round the school into the class room i left him in a mess.
My yougest starts school and the other reception class teacher and ta came to visit and told me he settled eventually after lots and lots of distraction.

danni I’m reviewing ds’ draft EHCP today. I’ll try and summarise the targets.

I agree, they seem to only have one solution to every issue. It’s absolutely unacceptable.

Welcome to the thread Harley, I hope you find it useful. I’m sorry your ds didn’t settle well this morning, I hope he gets used to being back soon.

Ds is back tomorrow. This morning he insisted on wearing his school shoes out and taking his book bag in the car! We had a nice play date at a school friend’s house, he needed a bit of bribery to leave...

danni here’s a summary of the first couple of outcomes (they get a bit wordier after that).

Interaction:
LT - will engage in cooperative play with other children
ST - will initiate play verbally and respond to other children’s actions with support and modelling from an adult

Cognition & learning:
LT - will attend to adult led activities for 15 mins
ST - will count, manipulate & compare numbers to 100. Will recognise phase 2 & 3 phonemes and apply when blending

• will engage in a mark making activity related to English or maths for 5 mins

Hope the sleeping has continued open. Good luck with going back to school tomorrow.

Furrycat my ds actively ignores people that are new or trying to engage him in something he doesn't want to do. Particularly if he finds the situation overwhelming anyway. I thought he was just uninterested until a SALT told me that he was using a lot of energy making an effort to ignore people.
Hope Thursday goes ok.

Hi Harley, sorry you're having such a tough time from your school. Lots of good information from light already. Could you maybe make them a communication book with a tick chart in? That way it's minimum effort for the teachers which might mean it actually gets filled in.
In terms of the EHCP there is a rule that you cannot apply for 6 month IF your child has been through the assessment process and was then refused. I don't think there's any waiting period otherwise.
You must've been quite unlucky at tribunal. I would've thought that if they can't work out what SEN support your ds will need would be enough to make the LA carry out an assessment to see what is needed.

Glad your dd seems relaxed light and brilliant ds's language has come on so much!

I hope your meeting goes well danni. We kept all ds's targets as although he made improvement last year in some areas overall the target were still relevant. I hope the school treat you and ds better this year.

Ds is back next Wednesday once the rest of reception finish settling in. We've got a social story about going back that we will start reading to him this week. Didn't want to give him too much advanced warning!

Although we had the review meeting at the end of last term things got delayed by the summer holiday. Seeing as we were keeping it identical pretty much, it should be ok.
I'm a bit frustrated that it had been delayed but i find it's a delicate balance keeping things to deadline and also trying to keep the school onside.

I don't know what to ds came home with soiled wet underwear and trousers on he even had poo on his shoe. School refuse to do the home school commincation book saying the teacher will tale too me if she sees necessary i have asked why they are so reluctant to communicate with me. Also they refuse to support ds to toilet will only give him access. They changed him once this morning. They have undone all hos toileting routine we had in place.

Harley because of safeguarding concerns school are not allowed to provide assistance for toileting unless the child has an ‘intimate care plan’ which can be put in place if the child has ongoing, daily issues. I suggest you ask to see the SENCO to discuss ASAP.

He has a intimate care plan hes had it since he started school last year. He started in nappies which he finally came out of in june since hes come out of nappies school have simply refused to do hiss toileting plan. They will change him every so often when he soils they just wont take him to the toilet and talk him though the routine.

Also have been emailing senco all day she said it will be discussed what they will do in the next inclusion meeting and she will have a meeting with me in a few weeks time. What happens in the mean time though

It can't be right that he will just be left to soil himself for a few weeks???

Is it worth getting your Councillor or even MP involved? This sounds completely unacceptable to me. Surely the SENCO should be offering to meet you this week or at latest on Monday?

Given how rigid the school are being it's not surprising that DS is struggling. I would struggle too.