Primary school Auties: into 2020! - thread 4

[LightTripper]

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

That's fantastic news liv!!! And a nice amount of time away too. Enough time to get DS used to the idea, but not so long that you feel you are investing too much in a setting that is not his long term one.

Will he get some visits/settling in sessions before he starts, or how do they organise it?

Thanks light. Yes they are going to work out a plan now. They reckon they'll do the settling in period before the holiday and then start him properly in the summer term, which would work really well for him I think. They'll also come and visit him at his current school.

That’s brilliant liv !!!

Wonderful news Liv

That’s great Liv. Best of luck to your wee one.

Great news Liv must be such a relief to know that it's really happening. Best of luck

Thanks everyone!

@openupmyeagereyes The school really do and i honestly believe this is part of the problem. Glad you had a good weekend and that the swimming with ds went well.

@LightTripper That is what we have been doing and the school are getting frustrated with my refusal to communicate in writing and my requests of if you want me please email me. They also don't like i follow up every conversation with a email. Great news that dd had a great party at the weekend.

@dimples76 i believe that this is ds school issue they don't want to be legally bond specific support they don't seem to like to have input either from outside agency. That's really not on with your nephews ta i hate how school think they can do as they please and then they aren't responsible if things go wrong. They moved out the ta that was there support ds to another class when they went back in January. Glad DS's party went well.

@livpotter That is fantastic news i am so please for your ds.

@open i agree with @light i never read it any other way and it didn't occur to me i think you worded it well.

We now have a advocate. She heard about are situation and wanted to help. She works for a company that goes into school to help with children that have usual profiles to manage behaviour and didn't situations. She knows ds school well as they have refused to let them in the past which she doesn't get. She has said we have done everything right. That he is actually entitled to a ehcp for his soiling and wetting issues alone that all this hes not complex enough business is rubbish, She also thinks ds needs a sen school and them saying hes to academic for sen is rubbish too. She has asked for me to get a referral back to the paediatrician as she believes that ds has adhd and a anxiety disorder and she said they should do the OT referral. She told me she wont get involved with school but is directing me with things to say and do so far we have asked for the name of the EP and if they would please update his pupil passport with his current needs. So far we have had no response on this.
After the social workers visit yesterday things have slightly changed i had a very passive aggressive email of the head to state that ds school timings are in my hands and that after on Friday i got a emailing telling me if i don't comply with what they say they would get the education welfare office onto me. I said ok i have nothing to hide. The LA have also swapped out our sendo apparently the sendo connected to school doesn't do tribunals so we have a special tribunal sendo.

That's great about the advocate @Harleyisme. Interesting but not surprising to hear that the school have not been comfortable with outside intervention before. Such a shame people can't just accept that it's impossible to know everything, and accept outside help...

I don't know much about SEN schools but I do think that kids enjoying school is more important than just about anything else if you've got good parental support. I know it's a billion years ago - but the primary school I went to was not good (plenty of kids left not able to read fluently at 12, for example), but it didn't hold me back academically at all because I read with my parents and they showed me/told me about interesting things (and actually the school was pretty good at topic work and making that interesting). As long as he's happy and being given interesting things to do, then the academics will largely look after themselves at primary age I think.

How is everyone’s week going?

Ds had a tricky day yesterday - at school and afterwards at home - but much better today, thankfully. He only lasted for about 5 minutes of the family assembly this afternoon though!

Last night while he was cross with us he wrote us a notice to put up on the living room door, he’s never done this at home before though apparently did similar at school a couple of weeks ago. Some of the words he spelt correctly and some he spelled phonetically, and some of it was a bit squashed or finished underneath but I was so proud of him. It feels like a big step forward for him to independently do this

I heard today from his afternoon TA (not the school) that she won’t be returning after half term so we need to find out the school’s plan for a replacement.

We have had a good week but I'm exhausted. DS's TA came out to tell me that they're really impressed by his improvements in toileting and concentration. His hair that he pulled out in the Autumn has mostly grown back and he doesn't seem to be pulling it out again - fingers crossed. We have a quiet weekend planned - main challenge is tomorrow's swimming lesson (he has refused the last 2 weeks). If it happens again tomorrow I will need to give up on it for a while

Funny old week here. DD (4.5) has been leaving the lunchtime table at her school and running in circles for the previous 2 weeks. I was told about this at the end of the 2 weeks so had a chat with DD by making her a Billy Book. This is something I use to encourage her to talk about difficult feelings or situations. I draw a little cartoon boy who is experiencing the same problem as she is and she says how he’s feeling and what would help.

All the time she’s talking I draw a picture of what she is saying, projecting it onto’Billy’. It works... but it’s hard to explain! Anyway, turns out that “Billy” thinks other people’s food is disgusting, the table is squashed, it’s too noisy and too ‘move-y’. She thinks it would help Billy if he had a book to look at during lunch.

So, I asked her when the book was finished “do you think you feel like Billy?” And she said “I always feel like Billy at school but not at home”. Right, I thought, job done.

So this week she’s been choosing a book to take in when she’s packing her school bag... except I was shown by the class TA the intervention used which consists of first telling DD to return to the table, then telling her to sit on the cushions if she won’t come back to then telling her to go and sit by her coat peg.

The coat peg is in the classroom cloakroom... she generally uses this space voluntarily of things get a bit much. When I saw this intervention I felt a little unsettled as it seems as though the cloakroom area is used as a punishment zone, a naughty step perhaps.

So on the way home I asked DD very casually if she’s ever told to go to the cloakroom and sit by her peg. Yes, she says. Door open to the class or door shut? Door shut. Who tells her to go there? The teacher, not the TA cos “he’s a really kind man”. How does she feel when she’s told to go there? Sad.

At this point I’m a little wary of not putting words into her or giving her any impression she has to say the right thing to please me as I know she’s a bit prone to that.

So when we got home I said to her that if it was making her sad I could ask the teacher not to send her to her coat peg. Then she got really anxious and said “no no don’t say anything, I was joking”. So I had to tell her that it was ok, I would tell them very gently and kindly that it made her feel sad and maybe she could look at her lunchtime book instead. She said again I wasn’t to say anything.

Cue a little discussion on the role of Mama: keeping DD safe and happy no matter what and that she could tell me anything, that she wouldn’t get into trouble....

I’ve let the topic drop for now as I don’t want the talking about it upset her more but I’m trying to think of how I can approach the school in a diplomatic way without rocking any boats while at the same time getting aware that maybe DD was exaggerating and going along with a story in her head... however that’s not like her to be honest. She’s imaginative but hasn’t ever been one for telling tales. I’d like to know your thoughts, peeps, you ever had this?

dimples great progress for ds! I hope swimming goes/went well.

furry great technique and what a good insight into how dd is feeling. I don’t think ds is there yet but I’ll keep the idea in mind for when I think he’s ready.

Thanks Open. Unfortunately swimming did not happen. DS was better able to articulate to me why he didn't want to get into the pool. He seems to have taken a new boy in the class in dislike (not sure why). I have enquired about private lessons instead.

We did have a wonderful, windy walk earlier during which DS was so enthusiastic about everything.

Oh, that’s a shame. At least he was able to explain why. Hopefully the private lessons will be better for him.

Hi all. @dimples76 we had a lovely windy woodland walk today too. Made my heart feel so light to run through the trees! And the snowdrops are out!! Took DS to a climbing centre, he loved it,but found the heights and coordination required hard. Was so happy with himself though! Broke all my normal rules and went for a McDonald's after! Was such a lovely weekend. Have scary work stuff and first taf meeting at current school coming up next week so...!!

We had a nice weekend overall - cousins staying with their daughter who is similar age to DS. Had some challenging behaviour from DS and DD on Saturday, but today was pretty lovely (and in fact today if anything it was DN kicking off a bit - which is a nice reminder that all little kids can be hard work at times!). I think DS is coming down with something ... he willingly went in the buggy multiple times today and didn't complain once about us not taking his scooter out with us even though DD had hers. Still, whatever it is it didn't seem to stop him enjoying the day, and it was lovely to catch up with my cousin and his wife (who are expecting their second around Easter).

Woodland walks and snowdrops sounds lovely!

DD has found swimming overwhelming since she started Reception, and refused classes. She still enjoys family swims but it's pretty slow progress on actually learning to swim. Might try to get her and DS some private lessons over the summer... not sure if being taught with DS is a genius idea (strong incentive to keep up with baby brother!) or a terrible one (pressure, and possible trauma if she can't keep up....) Does anybody else do private lessons?

Lottie glad you had a good weekend and ds was proud of himself. Good luck with the TAF meeting this week. Does ds have an EHCP? Sorry, I can’t remember.

Light family weekend sounds nice, I hope ds hasn’t worsened. Very slow progress here too with learning to swim though he has fun which is the main thing.

No grumbling about not going to school this morning which is strange for a Monday, though he was asking how long until the holiday.

We had a nice trip to a local-ish zoo yesterday, ds did well. We go there a few times a year so he knows it well and knows where he wants to go and what he wants to see. They also have a soft play that we spend a good hour or so in.

There was a good video about anxiety on YouTube from Coming home to Autism at the weekend. Their ds is nearly 10 and is going through an anxious phase. They have put him on half days at school to help him cope so it’s probably a fairly common strategy if your school will agree to it. Afternoons are definitely less productive for all dc I expect, which is why enrichment classes tend to be then.

No EHCP here or diagnosis so we're trying to get another assessment (last one said asd traits reassess in 6 months) !

Glad that you enjoyed the windy weather too Lottie. Good luck with the TAF.

Light DS had a trial 1:1 swimming lesson about 18 months ago (before he started school). The teacher said that he did not have the stamina for 1:1 (DS not the teacher!) I think he gets a bit cold and bored when they wait for his turn. I think that it might be worth a try again as he has matured a lot since school. DS has v poor gross motor skills - really struggles with kicking his legs in pool and can't pedal (our current project). How's DS - was he coming down with something?

Open glad that DS went back to school.after the weekend without grumbling.

dimples what an odd thing for the swimming teacher to say. Surely you work at your student’s level and build up? There are many reasons why someone might need private lessons and stamina and attention is often going to be lacking in younger children.

Ds also gets chilly in the water. We got him a neoprene suit and that’s really helped.

Class trip today... 😱

I'm really sorry I missed your earlier post @FurryCat1978. I love the Billy book idea - definitely going to use that one next time DD has worries! I actually remember as a kid I found it so hard to tell my parents stuff I was worrying about: like they would think I was rubbish for worrying about it, or they would worry about me, or whatever, it's hard to remember now - but I definitely remember it seeming almost shaming to admit to any need or problem (and my parents are the loveliest you could meet, so this was not something they were causing!) I think being able to talk about it in the abstract would have been a so much better way to do it: and then once it was "out there" and I could see they didn't think it was silly and had ideas about what to do, it would have been easier to admit I was feeling that way too. Anyway, that's a long waffly way of saying I think it's genius and I am definitely stealing it!

Did you talk to school about the peg thing in the end? I think I would, and there's no reason it has to be confrontational or they should take it the wrong way, as they probably have no idea she feels like that. The teacher has probably noticed that she likes being there sometimes and calms down well there, but hasn't thought through the fact that being sent there will feel very very different to taking herself there when she needs it as a self-regulation thing. It probably only needs a very slight nudge (e.g. asking her if she wants to go, asking her afterwards whether that was the right thing, or if there would have been a better solution they could try next time).

Good luck with the TAF and with getting a new assessment @LottieBalloo Do you know when you can next see someone (when is your 6 month reassessment due?) I do think as they get older it gets easier up to a point to diagnose, but then probably harder again as they start to learn to mask, so it's good to get a Dx before they get to 8/9/10 if you can.

Thanks for the heads up on the video @openupmyeagereyes. I do follow them but for some reason had missed it. I think her videos are really improving: I think I was weirdly a bit put off by the amazing production values and how beautiful her house is to begin with (I know, I am a terrible person!) but the anxiety one was really good and she had some good ideas. It was also nice to hear that Dylan watches all the videos and likes the idea of helping other parents, as it's something I always worry about when parents show their kids in their videos (as much as I find it useful!) Hope the class trip goes well today too!

That does seem a bit of a funny thing to say about the stamina @dimples76: with a 1:1 there is a lot less waiting around being cold - but does the teacher mean keeping up attention for that long without breaks is hard? If so, couldn't they just give more breaks? Sounds like they are not the right teacher in any case. DD is funny, she just likes to do things her own way and I think she worries if she tries a different way it will go wrong/she'll be out of control. So you feel like your attempts to teach are going nowhere and then suddenly out of the blue she'll just try it, usually get it right first time (she doesn't try until she's pretty confident she can do it!) and then be super happy with herself! That's what happened with teaching her to get her top off by crossing her arms. Must have shown her 10 times over a period of about a year before she actually gave it a go, and then it worked first time (or first time she showed me, anyway!)

I'm not sure DS really was coming down with anything in the end - but he continued to have toilet accidents over the weekend. Not sure what is going on really ... I think maybe just a bit overstimulated with starting nursery and all that. He has been saying he doesn't want to go and he's too tired some mornings: but then if we say "oh yes because your teachers are horrible aren't they, and the climbing frame is nasty, and the play doh is boring" he'll object in the loudest terms and say he does want to go, so I think he's just doing it for a reaction! He seems generally happy though, so I think it's just a bit of growing up wobbles, all will be fine. The last couple of nights he's also stayed in his bed until after 6am so that's very good! Possibly that transition was a bit tough for him too I suppose...

The trip went brilliantly, I am so pleased. He joined in everything and only got restless during the last half hour. He did not want to stay at school at lunchtime though so I brought him home. I wanted to end things on a high rather than for it to deteriorate into a meltdown. His teacher (a little reluctantly) agreed.

Hey that's great news! And I'm sure you're right about taking him home if there was any uncertainty over how he'd end the day: guarantees he keeps positive memories about school trips and changes to his schedule, rather than risking it becoming a negative!