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Primary school auties thread 9 - spring / summer 2022.

1000 replies

danni0509 · 12/03/2022 09:23

Thread 9.

Links to previous threads below.

For the parents / carers of children with additional needs, most of us have asd / adhd children in primary school, but anybody is welcome to join us to chat x

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

Thread 5
www.mumsnet.com/Talk/special_needs/3953023-Primary-school-auties-summer-and-beyond-thread-5?pg=1

Thread 6
www.mumsnet.com/Talk/special_needs/4166833-Primary-school-auties-spring-2021-and-beyond-thread-6?pg=1

Thread 7
www.mumsnet.com/Talk/special_needs/4303826-Primary-school-auties-summer-and-the-new-academic-year-thread-7

Thread 8
www.mumsnet.com/Talk/special_needs/4422100-Primary-school-auties-step-into-Christmas-and-the-New-Year-thread-8

OP posts:
danni0509 · 03/05/2022 18:36

Dimples Flowers so am I.

It drains me more than anything else, making sure ds is getting the correct services, hours at school etc, consumes more of my energy than looking after him. It shouldn’t be like this x

OP posts:
carriebradshawwithlessshoes · 04/05/2022 09:22

Sorry to hear all that Danni.

if you maintain he can’t do reduced hours because you now work (keep saying that), that may force them into saying sooner rather than later that they can’t meet need. I’m being a bit thick maybe but if that happens are the LA obliged to find him somewhere else? Does that have to dovetail with leaving his current place?

I do find this can’t meet need like a bit thin tbh. I understand a SS specialising in I don’t know dyspraxia saying they can’t meet need if a child attends with something radically different. They specialise in a condition and a child attends with a different condition. Fair enough. We don’t go to the dr when we need the dentist. But I would have thought that a general SS must meet the needs by its nature of a child with behavioural issues emanating from a condition like asd etc. ok there will be different levels of severity but that’s tough, where else is there that is different??! Is a general SS not a general SS?? DSs said they get many kids who come on a 3 to 1 but they don’t then have a 1 to 1 after they join. They may be talking crap but when I said why not, they said because we are a SS we know how to handle the child and what to do and have the right environment. Isn’t that a taken as read? Also I don’t mean at all to underplay his challenges but this is a child who you take out, on holidays, to family parties etc etc. if you can do all that, what are they playing at???!!!!!!!!!

I hope you get it sorted in a way that is best for DS.

dimples all of that resonates. DS is exactly like that, great in adult company, loves the attention, at his best etc. aptly the SALT at the new school worked with him well in that environment (at her office) then tried in school and was horrified at the difference. Do you think he could cope in a smaller MS school? I know class sizes are what they are in state but is there any private option that could be funded by the LA??? Maybe not but just a thought.

LightTripper · 04/05/2022 12:56

Hello! Just catching up with everyone. Sorry DS's school are trying to offshore him again @danni0509 . Is he still sleeping and eating better at least? I don't know - I would have thought if they can't meet his need then LA need to either kick them up the bum and tell them they have to find a way to do it, or find another setting that can.

On toileting: I just had a random thought. Do you think he might find a commode better than a toilet (if you have room for one)? It might be like a half way house from a sensory perspective between nappy and toilet?

I really hope the new meds work and kick in a bit quicker than they said.

@dimples76 sorry the EP feedback was disappointing. Is that the full report or is there anything else coming? It does seem bizarre that they didn't see DS in class if it's about his ability to access education (rather than just cognitive assessment etc.) I can see the point of doing both, rather than only seeing him in class - but surely if he's in a classroom environment then the natural/key thing is to see how he is able to access education there? Even when DD was Dx'd (age only 3), although the ADOS put her on the spectrum I think it was the nursery visit that was really definitive (and that happened first so I wonder if it affected the scoring of the ADOS to some extent too - i.e. whether they would have seen all the autistic traits if they hadn't already known their likely conclusion from the nursery visit, as some were quite subtle to my eyes at least).

It was interesting what you said about bi-polar too. I have a good friend who was Dx'd bi-polar who then much later got Dx'd ADHD and has found ADHD meds completely life changing, and basically now things it was un-Dx'd ADHD all along and not bi-polar at all. It seems quite hard to imagine how they could get mixed up though - but I think the inattentive rather than hyper presentation was so underappreciated/misunderstood that maybe they would just cast about for something else that might explain it?

@livpotter I see autistic traits everywhere in my family. I've always thought (since learning about it) that my Dad had traits, but at Easter my Mum said she wonders if she might be autistic too (I'm not sure as she also had a very weird childhood and is partially deaf which could be hard to disentangle but who knows?) On OH's side his Dad is certainly very very high-anxiety and has some social issues with reciprocity (though could be partly an age thing), his Mum had serious MH problems which could be consistent with family fall-out from AS, and his niece is quite classic "aspie girl" (though not Dx'd and I'm not necessarily saying she is - but just another example of the prevelance of traits around the family). My niece and nephew are pretty sensory/sensitive too. So I'm not sure anything would warrant a Dx but you can certainly see the traits/genes floating around basically everywhere.

Really sorry to hear about your cat @SusanStoHelitsPoker - how is DS doing?

dimples76 · 04/05/2022 18:45

Light that's interesting about your friend. My cousin has always rejected the bi-polar diagnosis.
I don't have the EP report yet, she just called to get my views when writing up the report. The purpose was to update the EHCP so I think that it should be both observation and separate assessments.

Carrie I don't think that a mainstream private school would really meet DS's needs as he can't keep up with the curriculum. I think that he will probably end up with a learning disability diagnosis.

Susan hope that you're all okay

SusanStoHelitsPoker · 04/05/2022 23:33

@danni0509 what a total farce, I'd be livid if I were you and contacting my LA caseworker etc etc. They need to step.up.or move aside at hid school. It's totally unfair on you and your DS.
@LightTripper that is interesting about bio polar.
@dimples76 wow your day sounded busy!!
We are doing OK, I'm staying up too.late watching Friends reruns with a wine. I'm not doing too great tbh with the grief which I know sounds silly, but he meant so much to me. I've never had to.process grief as an adult before. It is officially hard. DS is doing OK says he wants to order another one and asking how many days specifically before DH and I are ready to. Umm never, the way I feel right now. I've been doing some reading around life after death and using writing as an outlet, both of which have brought me some comfort. Just missing him really.

livpotter · 05/05/2022 06:28

Susan sorry about your cat. It's not silly to grieve for him. Animals are such a huge part of your life and processing grief as an adult is hard. I find the emotions come in waves and find it helpful to remind myself that not every day will be as intense as the last. I'm glad you're finding some outlet. Flowers

Danni I agree the school need to sort themselves out or help you move ds to somewhere more appropriate. It is not ok for them to be constantly changing the goal posts on you!

Dimples it definitely sounds like they need to see him in the classroom too. How frustrating!

Light same here autistic traits everywhere in both mine and Dh's family. I never noticed before ds but it's now just so obvious!

Ds is having a horticulture day today. It's with the school but off site today which should be interesting. I love the fact they try and get them out and about as we don't manage it that much at home.

dimples76 · 05/05/2022 07:16

Susan it doesn't sound silly at all. I am so sorry for your loss. Our kids are not always the best at helping with the grieving process. My sister had to have her dog put to sleep a few weeks ago and DS keeps starting to ask where the dog is, then says, 'oh yes, he's dead'. He does that multiple times within a couple of hours.

Liv, hope that your DS enjoys his day out.

openupmyeagereyes · 05/05/2022 11:41

Susan I'm so sorry about your cat. It's not at all silly to grieve, pets are part of the family and it's so sad when they are gone. Ds would be similar to the comments here. For us it would go something like: ds 'what happened to x?', me 'he/she died' and repeat ad nauseum.

danni I'm sorry that school are being difficult again.

Was going to write more but ds having a breakdown about something. bbl

openupmyeagereyes · 05/05/2022 14:17

Gah, game related angst...

danni I don't think I have any meaningful advice but I feel your frustration. How have the last couple of days been?

liv I hope ds' trip went well.

dimples well done for hosting your brunch, it sounded challenging. Great that the cousins all have each other. I'm sure as they all grow older they will understand and appreciate each other a bit more.

Ds had a great time swimming with school yesterday but did not stay long this morning. He's been rather highly strung today but we are going to a friends in a while so hopefully he will enjoy that.

danni0509 · 05/05/2022 15:05

susan sorry about your cat, I hope ds is ok etc x

Ds school phoned to tell me that ds can’t go to the park tomorrow because they don’t feel like it’s safe, (he’s had another ‘bad day’ today, although yesterday was better than the day before) she told him, as he asked and when she said he couldn’t go, he cried, I said I’m not suprised he cried! His class are going to the park and he’s not allowed to go, how would that make you feel if you were 8 and you didn’t understand why? Being left out of a trip to the park because of his disability. I said I think it’s cruel. It’s not exactly inclusion. So I said, I’ll take him to the park when he gets home, just 1-1 with me, no special training or anything, just me and him. (I love a bit of passive aggression 🤣) it’s hard work taking him to the park (but that’s exactly what the problem is, they don’t want the hard work!!!!!!)

Utter cunts.

I need to phone the local authority tomorrow when ds is in school just for some advice, I have ds annual review in 5 weeks, I think I’m requesting a different school (maybe try for the local one) if his school are shocked or can’t understand why, I’ll say, you can’t honestly tell me you are meeting his needs? Part time for the full year he’s been with them, even when they gave me positive reports for a little while they still didn’t increase his hours when I asked! They just want to pootle along managing him for 4 hours and take the money, not to mention they are regularly leaving him out of leisure centre trips and park trips and cinema trips with his class etc. How’s that meeting his needs?

OP posts:
danni0509 · 05/05/2022 15:17

His taxi asked why he was crying at collection time and the class teacher said because we have had to tell him he can’t go to the park tomorrow and the taxi said, why can’t he go? And she said because he’s too unpredictable especially not medicated and it wouldn’t be fair on the class.

So PA said; that’s awful, you can’t do that, the teacher said we have done a risk assessment this morning and that’s what has been decided for ds safety. So Pa got in the taxi and slammed the door on the teacher! 🤣 and the taxi said, his mum takes him to the park on her own I don’t see what the problem is.

I spoke to the teacher when ds was on his way home as that’s when she rang and I obvs didn’t know about the taxi or pa at this point and I also told her it was cruel etc.

Taxi and PA said they are awful for doing that.

Its not just me who think they are dicks is it!

OP posts:
dimples76 · 05/05/2022 23:14

That is shit Danni

I loved this bit though!:
So I said, I’ll take him to the park when he gets home, just 1-1 with me, no special training or anything, just me and him.

My sister and Mum went to visit an autism-specialist school today with my nephew in mind but they both thought that it would be great for DS. But still no ASD diagnosis here - I am going to call CAMHS tomorrow to find out when they think he will be assessed. When he was added to the waiting list they had said Summer 22...So I need to know if it really will be in the next few months. I think that DS would qualify for a 80% funded assessment through Caudwell Children but they are not local so that might be a bit tricky

EsmeWeatherwaxToYou · 06/05/2022 07:20

Good luck @dimples76 it's just so random I think. DS was told when he was 3 that he didn't meet the triad criteria because he wanted to play with the slt lady at the assessment and he was 'smiley'! Never mind the fact he continued to bash my ankles with a toy despite me saying no firmly multiple times because he couldn't read facial expressions and thought I was joking!! She also asked why i wanted to label my child and told me some people are just different...Then in the first lockdown the same child paediatrician called me and asked how things were going at school, when I said terribly and explained, she just said yep ASD then and diagnosed. He was still the same child who wanted to play, he just had never known how etc.

@danni0509 your poor DS, I can't even, I mean. People can forget I think that although our kids can be challenging, they are just still young kids. No wonder he was upset. My DS can be extremely sensitive but his old school couldn't see beyond the behaviour to see that. Start preparing for AR now, I guess? Do you have any other ideas about where? Local special school? Can you visit?

We are OK, DS a little up and down at school, but I'm getting there. Thanks for all your kind words.

EsmeWeatherwaxToYou · 06/05/2022 07:21

Sorry it's Susan, I've somehow managed to post under a different user name 🤣🤣

danni0509 · 06/05/2022 08:07

Dimples tell the nhs service you are looking at specific schools, that require diagnosis, you were told summer 22 for assessments / diagnosis and want to know if you are on track to have these appointments at the specified times as a diagnosis is now key to ensuring your ds gets the right school provision etc. I think it’s totally rubbish people are forced to go private especially with children! I look at therapy in America, and yes I know it’s expensive and paid via insurances, etc etc but they have so much more available than we do!

I just wanted to update on ds.

He’s still eating loads, more snacks than meals but I’m not bothered he’s always been a grazer like that. He’s getting the calories in though. His sleep is definitely better. He’s been going to sleep by 8.30pm at the latest consistently all week, he’s still taking his 2 sleep medications, but he could have had those previously and I’d still be trying to get him to sleep come 10pm.

His mood is more steady, so rather than up down up down up down argghhhhhh!!! it’s more on an even keel, not to say we aren’t having some kick offs but given all the things going on with him I’d expect that whichever medication he was taking. He’s still anxious, but his worried expression that was permanently painted on his face has gone, so I’m sure he must feel better to a degree,
his expression has relaxed if that makes sense? plus I expect anxiety to a degree will persist, that’s just part and parcel of his asd, it was never intended for his anxiety to go away completely, it was only to help reduce it.

He’s hit me twice this week, compare that to the week before when he hit me err let’s say 50 times?

Ds has taken 6 days of the new stuff, he’s on 12mg now but will take 30mg when he’s weaned on to full dose by the end of the month, and it’s not due to work for 6-8 weeks properly either.

His ADHD, which the medication is actually for, I don’t think it’s having any kind of impact yet, he’s v distractible, needs putting back to task constantly (but i think personally that was always the same on old stuff to a degree!) I’m like ds leg in trousers, no ds not the remote, that’s it leg in trousers, ffs no ds not up the stairs, LEG IN TROUSERS. No I didn’t say underpants off I said LEG IN TROUSERS!!!!!! 20 minutes later we have progress, 2 legs in 1 hole! 🤣🤣 things like that, constantly.

Then he’s being really silly like rolling on the floor making daft noises and acting like he’s 2, purposely spitting when he’s talking, constantly giggling and giving himself hiccups all day etc, and he’s being daft at school and well they have nothing nice to say but then there’s a suprise!

Hes still sitting and playing on his games and stuff, I wouldn’t say his hyperactivity is any worse / better just same old ds.

He’s still impulsive (nothing new) school are saying he’s worse, I can’t say he is, he’s just the same impulsive ds.

Hard to make accurate judgment calls with ds because he’s always been bonkers on and off medications.

But overall in my honest opinion, his eating, sleeping, lability of mood are improving.

OP posts:
danni0509 · 06/05/2022 08:09

Esme susan magrat you are the same person to me, I know it’s you when you use either name 🤣 hope you’re feeling ok x

OP posts:
dimples76 · 06/05/2022 17:29

Susan I had a lot like that too - he's so sociable, too chatty etc to be autistic. When I pointed out the rigid thinking, literal speech, sensory issues and explosive rages the paediatrician said we'll keep an eye on him then promptly discharged him.

Danni I called CAMHS several times today but failed to get through to a human so I'll try again on Monday.

Rather difficult day here. I got called in to see the deputy head as DS hit 2 children 'in the privates' at school today. He hasn't ever done anything like that before. I think that school over did it on the telling off. He is all over the place this evening. I am ready for bed.

SusanStoHelitsPoker · 06/05/2022 18:08

Oh dear @dimples76 , with my DS the telling off cements the behaviour more...hopefully it was a one off.
Another tricky day for DS at school apparently. He says he's happy there but it's a bit much, he'd like a school with less than 5 per class, and he misses the cat. I majorly messed up at work too and feel rubbish about it all on top of the grief. Just argh. Am going out with friends tonight at least, bit just totally fed up. This job is great re hours and holidays but I feel totally trapped, like I can't do anything else now, and I'm doing all this for DS but if he's not even very happy, 2hats the point. I get it and like things need to settle etc, behaviour comes in waves, etc but don't you just think sometimes, why bother, let's just the house and go travelling round the world for a few years! Feel like I need a few years out sometimes!

dimples76 · 06/05/2022 21:29

Totally understand that feeling Susan

I wasn't impressed by school's handling of it. The deputy was not impressed with me when I said that I thought all the drama around it and the fact that DS does not acknowledge/understand that he is in the wrong means that the behaviour is likely to be repeated. I also refused to follow her advice to tell DS that I was cross with him. I did say that I want school to say that they can't meet his needs...

carriebradshawwithlessshoes · 07/05/2022 10:11

Susan, was going to reply last night then got bogged down. Don’t feel like that, you are doing something work wise in the here and now which is right for you and DS in the here and now. That is not to say that you won’t do something other or different or that you can’t do something other and different in the future. All any of us can do is take a view as to what is right now. You are obviously very intelligent and skilled and that would be snapped up in any job if that is something you do alter in the future. Don’t worry about the work mess up it happens to all of us. My old boss used to say if you don’t mess up sometimes you aren’t doing the job properly. I also think all kids, ND or NT go through peaks and troughs with schools. DSs sounds great and he’s doing really well. I hope you enjoyed your eve last night.

I remember watching Cherie Booth give an interview and she was asked can women have it all? And yes said yes, absolutely… but not everything at the same time. I often think about how true that is!

Dimples, hopefully a one off with DS. Sounds like your family are a great support looking at schools etc. keep fighting for where he needs to be in your view. You as his mum know him best.

SusanStoHelitsPoker · 09/05/2022 11:42

Thanks @carriebradshawwithlessshoes feeling a bit better now!

danni0509 · 09/05/2022 15:36

I don’t want to speak too soon and I’m crossing my fingers when I say this, and hoping to god I’m not jinxing anything by speaking prematurely, but I think this medication is the one for ds!

Hes been overall much better this past 10 days.

Less angry, less aggressive, less volatile, eating more, sleeping more, more stable mood, less hitting me.

Not much in the way of reducing adhd symptoms yet (still v hyper / erratic and bordering on at times as being diagnosed as a lunatic 🤣 ) but I don’t care, ds is SO much more pleasant to be around! Mood wise, it’s made a clear difference.

Ive just had a chat with his teacher as he wanted an update on home, he phoned when ds left in his taxi, they can’t see these improvements yet at school, but he’s impressed what I told him about home. He said ds is having quite a lot of episodes at school and very up and down but he’s hoping for some of what we are seeing at home.

Ds helped me in the garden yesterday, mowed the grass with me (hand over hand) weeded the garden (he literally pulled all my weeds up himself, he did ever such a good job and earnt a magnum for his work! 🤣) Held the shed door open for me whilst I packed away as he didn’t want the door to hit me.

He’s been coming to the shops with me, helping me put milk / bread in the basket, using my card to pay, holding my hand in the shops etc. (ok ok he needs bribing with a sweet at the till but isn’t that standard procedure for most kids anyway?)

I have been having fleeting thoughts in my head, such as who is this child and where has the old one gone?!

OP posts:
danni0509 · 09/05/2022 15:39

Not to say everything is perfect. Nothing ever is.

I don’t forget he’s got autism and adhd though and it’s not exactly magic fairy dust he’s taking every morning, but compared to his awful awful mood swings previously, it’s definitely having a positive impact on stabilising his moods!

I just hope it continues x

OP posts:
dimples76 · 09/05/2022 17:32

Off to a really positive start Danni, fingers crossed it continues

LightTripper · 10/05/2022 10:11

That sounds really encouraging on the medication @danni0509 - and well done DS with all the household assistance - what a star!

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