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

Argh, lost my post. To summarise:

danni sleep is up and down. A few decent days, a few worse days, but he’s sleeping through and it has been much worse so I can’t complain too much. He’s been off the melatonin for a while as it makes no difference.

He’s not ‘read’ since my last excited post, he’s back to blending. I’ll carry on and hopefully it will click at some point.

Dimples the hair pulling must be really stressful for you. Brilliant about the spelling and mark making! I always find it with ds that when he makes a big leap in learning that his behaviours regress. Maybe the hair pulling is him coping with the progressing leap?

Harley I hope your ds is feeing a bit better today.

Well done at the dentist open!

Mapland that's really difficult. It must be hard for your ds to put up with that without reacting. It sounds like the school could handle that better.
Ds is more often violent to his TAs rather than other kids but he will definitely react if someone gets in his face.

Danni the school really sound like they have stepped up a lot since last year, which is really great for you.

@dimples76 it is horrible. Our school is far to stubborn to close they have been sending between 10 and 20 children home per year group. Some of them from breakfast club. They excluded year 4 and year 3 from school assembly friday to try control the spread. My youngest ds reception class had 6 children in today.

@danni0509 I have thought about home schooling. I just worry about him not having access to the specialist support he needs and he really needs to learn how to trust someone other than me. That probably sounds cold but i worry if things don't change he will struggle with independence growing up.

@openupmyeagereyes Yes ds has a Diagnosis of autism. To be honest i don't get the school either. They are fantastic with my neurotypical ds even today when he was upset as he left his painting at home the class teacher was so nurturing and lovely with him she calmed in down and had him in class very quickly. Yet with my other ds when he was in the other reception class she never came anywhere near he was struggling to go in and upset she just watched us and eventually one of the ta's would come and help. We had something similar before where My NT ds was accused of hitting someone which was not like him and it was a parent who pulled myself and ds the teacher sorted it out and phoned me about it to let me know. Where as my ds was saying when he was in nappies said another boy kept sticking his finger in ds's nappy the teacher said that ds was lying as the day ds said the other boy wasn't in class ds was addiment that he was so she got the register and checked and he was in class but she still didn't do anything about it as ds was still lying.
They think as ds is quiet doesnt melt down and is a massively stickler for sticking to rules that hes perfecly fine and needs no support they also assume as he has autism them more rigid and structured they make it means that he will be fantastic, They simply have the one view on autism.
I have spoken to a few other parents at school with sen children. Non of them are happy. Theres 362 children in school with 98 of them sen. The senco is senco, deputy head, head of inclusion and also a class teacher. She doesn't know the children only the ones in her class. She only attends meetings to discuss plans but she doesn't change them at all she wont do anything without going back to the class teacher and asking if they think the child needs it. She says all her job is to get the information from professionals and pass it on to class teachers. I could honestly understand this if class teachers. The school works in a odd way. They have an inclusion team of senco, support worker, social worker and a teacher. These people decide which children need to attend lunch bunch, which children need sunshine group ect but these people don't work with the children they are talking about they only have a quick report from teachers to make the decisions.
The school appose most diagnosis with the attitude of things like he can't have adhd as he is good sometimes. They told me several times ds didnt appaer autistic enough.They have told one mum to take her child who has a adhd diagnosis of his meds as they believe is problem is actually attachment dificulties. I orginaly put ds in the school as i was told it was the best in the area for sen and had even been given a award for there sen off the LA but i am now starting to wonder if this is more to do with the fact that they refuse to do hardly any ehcp requests. they fund there own services like EP so don't cost the council. I have looked into mainstreams in the area and most dont want him because they dont believe they could meet his need. Also they are full. Theres one lady with a ds with autism who has had to take him to a mainstream school across the county to get him the correct support.
Our county actually got into trouble last year for there poor support of sen children and services.

its ment to say i could understand if class teachers were more involved.

Spelling progress sounds amazing dimples, and great that he is starting to enjoy mark-making! Just shows how rubbish these tests of cognition are really - I think they're just measuring NT cognition but ND people just do things differently so I'm not convinced the tests tell you anything interesting....

Sorry about the hair pulling. I think trichotillomania (sp??) is quite common in autistic people ... not sure if that means there are resources for it though!

We had DD's parents evening. It's so quick. We actually get 15 minutes this year (it was only 10 last) but because they are now trying to cover maths, english, reading, handwriting, topic, social, etc. it still feels crazily short. Anyway, it was good and she seems to be getting on well (although the teacher mentioned she is going in during break time the teacher is reading with other kids to tell her about thoughts she's had ... which she said in an "it's so nice" kind of way but sounded quite annoying .... anyway, I don't suppose there's much we can do about it from home! DD is just quite on her own agenda...)

They showed us some cards they'd made for her as visual prompts, which looked good. One for getting her stuff at the end of the day (photos for all the things she needs to collect: reading book, homework book, bag, lunch bag, coat & helmet - and then a photo of them all together on DD's table), one for getting changed for PE, and one more general one just showing a closed work book, and open empty work book and then a filled in one. That last one shocked me a bit as it seems a bit obvious (!) but if they think it's helping her it's all good. I think this has been done by her TA who's been on the EarlyBird with us. He was pitching it as "oh it's useful for all the children" but actually it's photos of DD's stuff and right by where she sits, so it's definitely just for her .... but anyway, if it works it works, and she seems to like it, so all good! Thought I'd mention it in case anybody else thinks their DC might benefit as I think it's quite an easy thing for the school to do and doesn't really cost anything.

Had some crazy work deadlines earlier in the week and finding it hard to motivate myself now sigh. Right, cup of tea and then I'll get myself going again.

That does sound like a weird system Harley. I wonder how they were winning awards if the parents are all unhappy? Do you think the awards were given because they were doing everything on the cheap, rather than because they were effective? Good that you have other parents to back you up at least. Definitely worth looking at other schools I would have thought. If spaces come up and you're on the waiting list I don't think they can discriminate against you because your DS has SEN?

Sorry to hear you're also journeying through your DS hitting etc Danni.

Open I know what you mean about the teacher using that expression, but tbh there are so many difficulties within the school that I'm becoming used to it.

Harley if the Senco is also deputy head and teaching a class, that's the problem! It's bonkers.

How much do your children understand about Xmas? Ds isn't clued on as such but he's getting some idea this year I think.

My trees already up (since 10th November! 🙈🙈) we've been telling him all about Christmas, he seems interested.

We are going to see some lights switched on tonight (it starts at 5 but we are going at 6.30 once everything has switched on and the crowds have gone) just so ds can see the lights. We made the mistake last year getting there when it was packed and he freaked out and laid down on the floor screaming so we are going when everyone has gone home.

He asked me this morning 'Will Santa and the elves be there mummy' bless him. I love his innocence.

I remember when my sister was the exact same age as ds now and I told her a nail hanging in the wall was a spy camera linked to the North Pole and if she misbehaved Santa would not bring her any presents. She looked at me straight faced and said that is not a camera, that is nail you hang a picture on and there is no such thing as Santa anyway!

erm ok (!)

Ds helped me put the baubles on our tree. I had to re arrange a bit once he'd gone to bed, I had about 40 baubles hanging off one branch

He's been super well behaved this year and only took all my decorations off the first couple of days. He's not touching it now. Possibly because I threaten to phone the elves!

X

Danni DD was aware of some of it last year but had no interest in seeing Santa/Father Christmas or writing to him etc. This year she seems to have picked up on it and this morning I have been googling autism friendly grottos! She refused to enter one at Bunnings two years ago and wouldn't even hand her letter to the attending elf. Last year she was too scared to see Santa at IKEA too!

She did get terribly upset last year when Santa hadn't got her a Nella The Knight sword and had massive meltdown over it for days. She had mentioned the Nella Sword a couple of times in the summer last year but she didn't watch the programme or talk about it any more after that so I bought her things she was actually into, like Frozen. Big mistake! Had to make up an excuse over Santa being delayed and ordered the darn sword from Amazon, think it arrived on the 27th!

This year she is asking for every item advertised on TV so am going to print a sheet with images of them all and she can pick three which will then be added to a letter to Santa. Hopefully this will avoid Christmas Day meltdown!

Last night she had a meltdown over the mermaid in The Singing Mermaid book not wearing a bikini top, like Ariel. This morning she didn't like the way I had painted the bedside cabinets (shabby chic effect, painted TWO years ago...) which led to grunting and stomping for a good while. I'm walking on egg shells here!

Catching up on rest of thread...

Sorry about the hair pulling Dimples, must be distressing to see. DD pulls her finger nails and the skin on her fingers until red and raw. Before this it was lip picking and before that eyebrows and eyelashes.

Sounds like a good parent evening Light and it is great that they have taken the Early Birds recommendations regarding visual prompts.

Sorry about the hitting Mapland hopefully it will pass. There seems to be some hitting between the NT boys in DD's class too (there are 20 of them!). Still, I understand why you would feel down about it. The NT boys might be hitting for a different reason though and with ASD it is maybe down to frustration and someone getting too close, rather than as an act of aggression. DD is hitting and scratching me a lot at the moment but I think it's frustration rather than her intending to hurt me. I hope anyway!

Harley sorry the school as continuing to be unsupportive. Hope that you are looking after yourself too.

open hope your DS is having a good day and slept ok. for your DS at the dentist!

liv

Little ds wouldn't go near Santa. He won't this year. He's funny about things like that. We went to Meadowhall last year and paid for the grotto, ds just emptied Santa's sack for presents whilst Santa was looking at me like what the fuck does your child think he's doing? Lol!

Dh had to carry ds out while I put everything back in the sack.

We get really random kick offs, my mum came last night and ds was playing on the rug with a few cars whilst me and my mum sat on the sofa talking. Next thing ds erupts because my mums feet are hanging off the sofa, he wanted her feet up on the sofa not hanging over the edge!. Luckily she's not in the faintest bit bothered by what he says or does so she put her feet up and he carried on playing but he kept turning back to check her feet

Ds does v strange stuff only he will understand. He decided one day he didn't like door handles on any of the doors so broke them all off (don't ask!)

I'm dreading the run up to Christmas stuff at school, there seems to be at least three performances of the Nativity, including a dress rehearsal. Then there is a Panto the day after followed by a Christmas visit to the village church the week after as well as Carols singing in the school grounds for parents to watch, Christmas Bazaar etc.

I reluctantly made a 'jazzy jar' for the Christmas Bazaar next weekend but I can't see why DD would want to go to the school site for a bazaar when she is struggling there in the week. I'm feeling a bit sad to be at 'conflict' with the school when all the other parents are happily baking cupcakes for the event and volunteering to help the school in any way they can. I probably sound a bit catty but I can't muster the enthusiasm to get too involved when I am seeing DD not being supported.

Danni I totally get the feet in the wrong place thing! That is exactly the sort of random thing DD would get upset over.

(I should probably add that I don't show my reluctance regarding the school in front of DD)

DD loves Christmas and is very excited about the tree going up, but definitely wouldn't go to sit on Santa's lap or anything (she has been to a grotto in a community garden thing, but there were several kids going in at once and she stood as far away from Santa and Elf as possible ).

The one I'm wondering about this year is nativity. Last year they had a Christmas concert and it was just Reception and she managed to join in (no lines but she wore a costume and slightly joined in the singing). This year Year 1 and Year 2 do a nativity together, so there's more individual lines and stuff PLUS a lot more parents, and they do it in the church next door.... so we'll see. It would be nice if she could join in but not a disaster if she just wants to watch!

That sounds a nightmare re: the door handles Danni! I guess maybe a sensory/anxiety thing?

Ds loves Christmas but is scared of Father Christmas when he sees him. We haven’t been to a grotto but each year we’ve been on a Santa train where you stop and he works his way down. Ds does not like that bit but enjoys the rest. We forgot to book tickets before it sold out for this year so we’re looking elsewhere.

When he was younger we had a couple of years where he wouldn’t open presents. Last year he was fine so I’m hoping he will be this year too. Thankfully he’s ok with the tree and decorations going up and everything looking different. So far anyway...

He’s a bit unsettled by the nativity prep at school - it’s a reception and KS1 performance. Last year he did most of the prep, had his photos taken but then refused to do the dress rehearsal for KS2 and some elderly guests and was then ill the day of the (2) main shows. We’ll see what happens this year but I’m not expecting him to take part.

We will write a letter to Father Christmas at the beginning of December. There is SO much he wants and I keep telling him he will have to narrow it down, though it’s his birthday early Jan which helps. Mostly it’s either Lego, Star Wars or Star Wars Lego so pretty straightforward if not cheap!

He’s gone into school every day this week without complaint thank goodness. He’s been a bit unsettled, most likely due to the nativity rehearsals. I’m glad it’s the weekend. Dh is back. Tomorrow we’re going to try a local advent Fayre and Sunday an indoor play place. The last 3 days he’s woken about 4:25 so hoping for better over the weekend 🤞

Lovely video from Nurturing Neurodiversity today. I need to make a list of all the things ds can do now that he couldn’t a year ago

That is great open I hope you get a slightly longer sleep at the weekend.

Glad DD isn't the only one not too keen on Santa! I think there is a Santa train thing on in DH's childhood town, where DFIL and DSIL lives. Might give it a try as DD does like a train, as do I!

We love a steam train too

DS loves Christmas and seeing Father Christmas. We're seeing FC tomorrow! We're having a little break at Drayton Manor. Last year when we got to the front of the queue at our local Christmas festival DS said to Santa 'I'd like a chocolate selection box from other there, please!' Fortunately Santa found it funny.

We had a difficult drive - DS was actually really good but didn't go sleep til 10 so tomorrow will be interesting ..

Have a good break dimples, sounds lovely.

Have fun today dimples.

Hope you got a bit more sleep today open.

I hear you danni and littleswede ds gets very controlling about things when he's anxious. I need to be in the right place and doing the right thing or he loses it!

Glad the parents evening and visual prompt are good for your dd light.

Ds get the idea of Christmas, mainly because of tv shows and films. He still gets super stressed on the actual day though, we have to hide all the presents and get them out one by one otherwise he goes a bit crazy. He does also enjoy throwing Christmas tree decorations when he gets annoyed. Hoping we don't have another tv smashing incident again this year.
I definitely don't think ds could handle a Santa's grotto thing and after a recent attempt on a light railway, we are never going on a train again!!

Otherwise we've had an ok week. The local authority have done his review and said they will be making some amendments although I don't know what they are. Very nerve wracking!

We're having a fab day with my little thrill seeker - he loves the rollercoasters! In soft play at the mo which is incredibly quiet.

Re the visual prompts unfortunately school seem rather reluctant to use them as they say that his verbal understanding is good - which is true but I use them at home to ease his anxiety and to help me deal with repetitive questions

Danni the story of emptying Santa's sack is actually genius, your DS was behaving in the most honest and logical way, he was doing what we all secretly want to do!!!

My DS likes Christmas but exactly as you've all said, I fear the disrupted routine and extra events at school may throw him. We'll see how it goes ...

I'm nervous that during the actual two week holiday period itself we have too many different things in and not enough decompression time. But v difficult to arrange otherwise, as we have step children to include plus other main family gatherings. And all too far to be able to travel in a day, so need overnight stays. Hmm...