Primary school auties: summer and beyond - thread 5

[openupmyeagereyes]

This is the continuation of the thread for parents and carers of autistic children in Early Years and KS1. Most of us are parents of children in Reception or Year 1, but all welcome!

Here are the links to the previous threads:

Thread 1: www.mumsnet.com/Talk/special_needs/3080753-DS-with-ASD-starting-school-Sept-2018-I-am-feeling-overwhelmed

Thread 2: www.mumsnet.com/Talk/special_needs/3451020-Reception-auties-2018-19-thread-2

Thread 3: www.mumsnet.com/Talk/special_needs/3628263-Auties-transition-to-Year-1-thread-3

Thread 4
www.mumsnet.com/Talk/special_needs/3748449-Primary-school-Auties-into-2020-thread-4

Hi 🥰

Seems like we been posting for an eternity. My earliest post on this thread was 2017.

I just looked at a couple of my posts on the other threads you linked in, god I don't half waffle

It's surprising how much Ds has come on though when I compare him now, to those early posts.

danni it’s good to vent sometimes

Is ds eating at school now,

Ds has come on so much too, I can’t believe how tall he’s got. Still living in his PJ’s at the moment

Thanks for starting the new thread Open. Good idea Danni I am hoping that looking at my first posts that I will feel that some progress has been made.

I read a post when I said he doesn't understand anything we say even basic instructions. That post was 2 years ago, he didn't even understand when I said sit down. He was about 4 at the time.

Roll on to now, I spell things out and talk in secret code to dh if ds is in earshot because he doesn't miss a trick. I have to be very very careful

Granted it's still not age appropriate! but not as bleak as it was back then.

Open no to eating! He went a step further and now won't use the toilet at all whilst he's there! That's another one of my ongoing issues lol.

When is ds going back to school? X

Joining new thread. I’m sorry things are so tough @danni0509. I hope you have some luck with the independent school... you never know, you might get some joy there. Have you checked out the grants from independent sources? Charities, trust funds and so on? Some of them might be worth a shot?
DDs first week back last week was ok. Mornings only and collection and drop off at the gate. Now we have the transition difficulties in the street 🤭 so that’s fun. I’ve got a sunny day back up of picnic on leaving but don’t know how a rainy day will go!
Best of luck for this week, peeps!

Most likely not until September. We’ll discuss it at the annual review next week I suppose.

Oh that’s a shame about the toilet. Does the incontinence team have any good ideas?

dimples I hope school is still going well. I’m sure all our dc have made lots of progress 😍

We just had a blustery walk in some local-ish woods.

Place marking all! Hello!

Hey everyone, sorry I've been a bit absent. I'm checking in about once a week. Can't believe we're on a new thread! Thanks open.

Danni I would definitely try and fight for the school you want. You need to prove that it is the only school to meet his needs. Have you got lots of reports? Would the school be supportive in writing reports to help?

Dimples hope all is going well with the new baby and ds.

Furrycat well done getting DD back into school, transitions are tough.

Ds is settling in to his new school and so far so good. He actually told me he liked the new school on the way home today. I'm not sure he ever said that about the old school.
I've hopefully got transport organised for September too, which is good, although I have no idea how he will handle the bus! Guess we'll cross that bridge when we get there.

Can't believe the progress ds has made over the last few weeks let alone since we started on these threads. He's completely unrecognisable, particularly in his language and emotional development.

Liv that's good news re the new school.

When I found my first post on the first thread it made me realise how far I (as well as DS!) had come. In 2017 I was terrified that I wouldn't manage to get an EHCP for DS as the Council had refused to assess. Little did I know then that 3 years later I would have appealled to the SEND Tribunal 5 times (for my DNs as well) and one all but one (that still maddens me though).

Talking to my sister today I realised that DS turning 7 has been a real challenge to me. I think before I always reassured myself that he was only 4/5/6 etc.

Today I managed to go on a walk with a friend who has also recently adopted for the 2nd time. It was lovely until I got a call from school to collect DS. The council has advised that if children have poo accidents that they must be sent home to clean up. It was 1:30 so no point going back. Bit worried that DS might do this intentionally now ...fingers crossed that I am wrong

Dimples quick one this morning but just wanted to post to say our LA have said exactly the same. Any pooh incidents & also any spitting which ds does i must be phoned and he must be collected. We got a risk assessment last month and all that was included & I had to sign it.

Dimples scrap that! I thought I was wrong so just checked risk assessment & It's not for pooh incidents, they have mask gloves and aprons and he must have 2-1 to be changed. If he becomes difficult to change (he once got shit on his 1-1 jeans and she had to go home to get changed 🙈 by laying back on her being silly - something he does to me often!) then they must phone me.

It's the spitting I have to collect him for, if he doesn't listen to the warning or stop after being distracted they have to phone me and I have to pick him up.

Hello! Just jumping on the new thread. How did we get to Thread 5?!

Just caught up on the other thread and that school does sound amazing @danni0509! Definitely worth a shot. I guess you will need to visit both though, and just work through why the "default" option isn't suitable.

Well done for not swearing at the incontinence nurse (or well done for swearing at her, if you did). Do they really come across people sometimes who haven't thought of sitting their 7yo on the loo? Maybe they do...

Thanks Danni I had originally offered (when we were planning his return) to school that I could collect him but they said it was fine. They do a half day on Wednesdays to allow for cleaning and PPA time and it seems he had a good morning - phew! I was going to ask for a referral to the incontinence service but from what you said I wonder if it's a waste of time.

I was wondering if any of your children are like DS in this respect - I have never seen him look embarrassed. He just doesn't seem to be at all self conscious. I think that this has been a bit of a hindrance in the toilet training process.

Ds doesn't get embarrassment either dimples he doesn't understand that concept at all.

Had a call from school this morning. 'Nothing to worry about but your DS wants you to know that he did a wee on the sofa this morning and was worried that you would sit on it'! I'm so fed up of all these toileting accidents but I'm v happy that he was cared about me.

Aww dimples 😂 bless him but bless your sofa and you more for having to clean it up!

Ds shit on the bathroom floor when I lifted him out the bath last night and I stood in it with no socks on I had shit in between my toes 🤣

He hasn't had a pooh on the toilet since February 😔 it's either in his nappy he wears for bed his pants or on the floor.

I stand in solidarity with you because I'm sick of it too!

He's obsessed with cats like literally obsessed. He thinks he's a real life one ffs! Meowing at us and asking for cat biscuits and cat milk etc.

So I had an idea, I see this in Poundland and bought it thinking this would make him pooh on the toilet. I made a fuss and told him all the cats use this to wipe their bum when they have been on the toilet,

Here I present cat toilet roll 😆😆😆

I'm sad to say it did not work.

I'm thinking of just getting him a litter tray 🙈

He breaks up from school 2 weeks today, he's got 7 weeks off school, god help me, what happened to 6 weeks summer holidays?! was never 7 when I went to school

I found out his class for September but they have no idea who his 1-1's are yet and when I asked his 1-1 who he's had for 2 years she said they are having a re shuffle so they aren't sure yet, I said does that mean you won't have him and she said I hope so but she looked a little erm how can I say, asif she knew she wasn't but couldn't yet say.

Ive just got a feeling he won't be with her.

Cross that bridge in September!

Hi can I join? My DD is 5 and near certainly ausitstic. She very nearly received a diagnosis at 3 but she strung a 2 word phrase together in the assessment so they asked to wait a year or two to confirm it. Then she got stuck in a gap in the system where she needed to wait to be school age to be reassed. She started school September 2019. Within 2 weeks everything hit the fan with her at home and she desperately held on at school. Then by Feb it hit the fan at school too. She is now 1 to 1 at school at all times. SALT and peads have both said an ASD diagnosis is almost certain but blinking formalities. School and I can clearly see it's obvious. She's just been classed as a child in need and we are trying to get a higher level of support in place for us at home. She has just had an agreement to assess for her EHCP.

She has been doing transition with her new one to one for the past few weeks, I think school is bending the bubble rule but felt it was more important but she isn't taking to the new one yet. Dreading September :(

Hi reality you have been on another thread I was recently on x

The one where our children are putting NT ones at a disadvantage during this school mess?