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Primary school auties step into Christmas and the New Year - thread 8

999 replies

openupmyeagereyes · 09/12/2021 13:45

New thread.

This is the continuation of the thread for parents / carers of autistic children / children with additional needs. Most of us are parents of children in year 1 / year 2.

Links to old 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

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

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6
MagratLancre · 24/02/2022 16:40

Interesting @openupmyeagereyes it's on my list of things to read. Just starting The Familiars and Mexican Gothic. Got a non fiction one on the go too called River Kings, good so far!

dimples76 · 24/02/2022 17:42

Great news on the Dentists Liv. I cried (happy tears) on our last but one visit when DS actually let the dentist check his teeth. He wasn't quite as good on Tuesday but still much, much better and amazingly his teeth are fine. Given the ice crunching, ice lolly addiction and brushing issues I was expecting that he would need fillings.

After the dentists I suggested we went for a treat. DS asked to go to the pub - not sure where he got this from as I can't remember the last time we went to a pub! He does enjoy eating out and eats quite a variety of foods. He does not sit still and he asks the staff a lot of questions but we only go to family friendly places. I wonder how indulgent people will be as he gets older. Although he is a few months off his 9th birthday he wears age 6 clothes, he has quite cherubic features, blond hair and green eyes - people are v drawn to him at the moment.

MagratLancre · 24/02/2022 18:04

Sorry @livpotter I missed your ace dentist news, woohoo! I had to take DS recently and he sat in the chair this time at least!
@dimples76 DS chews through ice too! He is obsessed with lollies and has got me making ice slushies now (just a bit of squash and water!) But he is marginally obsessed!
Anyone following the news in Ukraine? We have gone there quite a bit, it's heartbreaking, then worrying as to what the fallout will be!

openupmyeagereyes · 24/02/2022 19:24

Magrat it’s horrifying, my heart breaks for them and for the world really. Trying not to worry about where this may end.

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dimples76 · 25/02/2022 22:30

It just feels awful to think what the people of Ukraine are facing and that even with the eyes of the world on him, Putin does not care.

Not a great day here. I was working so my stepmother looked after DS. At her house DS pushed her dog down the stairs. Normally when I thank her when she drops DS off she says my pleasure/any time/please let me know how I can help. Oddly enough none of that today and I can't blame her.

Danni any response from school or LA?

danni0509 · 26/02/2022 08:40

dimples I’m sorry your ds did that, when ds does things similar to that I’m in no way shocked or suprised but it doesn’t make it any less embarrassing. It makes you worry more for the future doesn’t it when they do things like that. That’s how I felt when ds was trying to suffocate my baby nephew with a pillow and trying to tip him out of his pushchair, ds had pure enjoyment on his face Confused he obviously doesn’t understand the implications of such things but to see his utter delight did really concern me for the future.

Last thing you need for childcare purposes! Flowers

I did hear from ds teacher yesterday morning by telephone, not so much about his hours, the conversation was more aimed at ds ‘significant emotional outbursts’ and this is the reason ds teacher wants to have a chat with his CAMHS consultant. Ds had had a 40 minute meltdown which ds teacher said was the most spectacular meltdown he’d witnessed and ds emotional outbursts are disproportionate to the event, what triggered this was the girl he is fixated (understatement!) with had to go for her salt session in school, they had given ds count down reminders, changed his visual timetable to reflect this and set up an activity which he loves to do, when said girl left for her appointment ds lost the plot and had to have half of the school to calm him down by all accounts, his teacher said it was frightening to watch and to be honest this is what I’ve been bloody telling them all along, it’s like he’s possessed! He is sick all over my house takes his clothes off runs around hitting anything and anybody including himself, bites himself pulls his own hair, he gives himself that petechaia (sp?) like the meningitis rash that doesn’t fade, his face is covered in it when he has his outbursts, he loses his voice from his screaming. His eyes take days for the blood shot to go. He gets extremely violent and It’s horrible to deal with. Nothing helps to calm him down.

Well this is what’s happening at school, for small things, (small to us, clearly not to him) but his reactions are extreme, so his teacher said all our usual strategies are not helping ds so they want to talk to CAMHS and see if they can suggest any specialist therapy beyond what they have already exhausted to help him deal with his emotions.

I did say I’m not happy for any more medication right now and that I would only use that as a very last resort.

I can’t blame adhd medication on this either as he’s always had meltdowns / tantrums on steroids.

I phoned CAMHS and they have arranged for ds consultant to contact his school, can’t complain about CAMHS to be fair, anytime I ring them they get straight onto it!

Regarding his hours, he said he understood my email, didn’t think I was rude, could see I was frustrated and he has a meeting with the headteacher on Monday and will update me after that. He said he had planned to have ds until 2pm at some point this term. (Not buying it to be honest) but we will see.

Talking of the girl he is fixated with, do you know what ds has done?! Changed his surname to hers. So on all his school work he is writing his first name, her last name. 🤣 his teacher told me this and has sent me a piece of work home with it on. I asked ds about it and he said that’s my last name now. Wtf.

danni0509 · 26/02/2022 08:51

Medication I’m talking about isn’t additional adhd medication, I think it will be something to help control his anger / reactions, what we spoke about before carrie (risperidone) I’m not particularly happy about it, and would rather exhaust all other avenues first. That’s why I said to ds teacher im happy for you to talk to CAMHS but I’m not happy about giving ds any more medication. (I will not be rail roaded into anything either)

I would rather start with trying a different adhd drug.

Throwing anti psychotics at an 8 year old isn’t a decision I’ll be taking lightly!

danni0509 · 26/02/2022 08:54

CAMHS have said to me ds school are notorious for this with reduced hours and pushing for more medication. I thought it anyway, but had it confirmed by a consultant psychiatrist!

I always keep that firmly in my head when basing my decisions.

Think with them it’s anything for a quieter life, except it’s my ds life isn’t it.

MagratLancre · 26/02/2022 09:00

@dimples76 sounds awful, its hard isn't it as adults know on some level that our DC are not fully aware of what they are doing, but it is still difficult to deal with our own emotions at things, especially for other family members. I remember when DS ripped my DM's prized wallpaper off (while cackling) that she gad only just put up...
@danni0509 sounds like they are trying but your DS seems like a bit of a challenge for them so they're trying to work out how to support. Not excusing their behaviour so far but at least you have a more open dialogue with them.
Did my first Friday night without a wine in a while last night, very much enjoying the fresh feeling this morning! Currently going through recipe books with DS as he wants to cook this afternoon.

danni0509 · 26/02/2022 09:13

Yes magrat. I’m not overly happy with ds school from my dealings over the last year, but they are experienced. His class teacher has been a specialist teacher for 20 years and I know from our many previous conversations he does know what he’s talking about. He too finds ds a complicated puzzle.

Enjoy your afternoon cooking, ds is coming to Argos with me to pick up some dumbbells I ordered. I started a diet AGAIN last Sunday (intermittent fasting..) so I’m going to do a YouTube exercise video when he’s at school, ive been walking an hour a morning when he’s gone. I’m going to get him a McDonald’s on the way home, nothing else planned.

dimples76 · 26/02/2022 10:33

Danni glad that school got back to you even though they didn't address your main query properly. It does make sense to me to try different ADHD medication first.

I do find it very triggering when DS goes for DD and pets. I can't ever imagine us ever being able to have a pet. I am keeping diaries for the adoption psychotherapist that we're working with but I am struggling to see a pattern. Most of DS's outbursts/attacks seem to erupt from nowhere - I just can't seem to figure out what sets them off.

I am feeling sorry for myself as I woke up feeling ill and have now vomited. I have sneaked to my bedroom for a lie down but I think I'll get 2 mins of peace tops.

openupmyeagereyes · 26/02/2022 13:54

dimples I hope DSM's dog is ok and that you're feeling better now. Sickness bugs are awful, especially when you have young dc.

danni the meltdowns sound so hard but it's good that school have witnessed them too. Do they try and work with him on zones of regulation or anything like that? It seems quite big in our school. How often does one like that occur at home?

Ds went into school again yesterday morning and stayed a little bit longer. In the afternoon I took him to soft play and he had a great time, they had also done some soft play during PE at school. It was quiet because it's term time here and I was able to just relax with my Kindle while he played which was fantastic and something I worried would never happen when he was younger and I had to watch him like a hawk. One of the things that has happened occasionally in the past is that he tries to join in a group of NT boys and they aren't interested and he doesn't understand why and can get upset. Thankfully that didn't happen yesterday.

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openupmyeagereyes · 26/02/2022 13:57

danni how are you finding the Kazdin book?

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danni0509 · 26/02/2022 14:30

Yes school do open they use the incredible 5 point scale and other things, mood boards and things like that, every morning they have to discuss how they are feeling, what’s made them feel that way and velcro the relevant picture face on to a body of their current mood etc. I’ve bought shit loads of storybooks for him off Amazon about anger / emotions which we regularly read. I’ve got quite a few different visuals off eBay myself. Regularly label his emotions for him as and when they occur and discuss with him why we feel like that and what we can do about it.

How frequently at home, it’s difficult to say, he’s tantrummy anyway and he tantrums anytime he doesn’t get his own way, like screaming and going beserk, sometimes it’s all he does all day, but full scale like I described above, maybe once or twice a week? Sometimes once or twice a day! There’s no pattern! All depends what mood he’s in.

The kazdin book is ok, ive read about 3 chapters so far, it’s things I think we would realise anyway but it’s not a bad read. The reward chart part is really in depth though, ive had a quick scan but not read that part fully. He seems to think if you’ve used reward charts before with no success you haven’t done it properly so we’ll see what words of wisdom he has for me 🤣

openupmyeagereyes · 27/02/2022 16:04

I thought they probably would danni, and I know that you are on the ball. I guess there's perhaps a lag for some dc between hearing information and realising that it actually applies to them.

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danni0509 · 01/03/2022 04:44

Fourth morning in a row ds has been awake for the day between 3am-4am. Getting really annoyed now, as if his usual 5am wasn’t bad enough 😞 he doesn’t go to sleep any earlier, 9.30pm last night.

danni0509 · 01/03/2022 04:53

Feeling sorry for myself as per usual…. oh well only 4 hours until he goes to school 🤣 and 8 hours until he’s back 🤣

openupmyeagereyes · 01/03/2022 06:42

danni it sucks. Ds awake at 2:30 yesterday, 3 today 😴

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openupmyeagereyes · 01/03/2022 06:43

I do get a little extra sleep as dh and I take shifts of a couple of hours but it’s still broken sleep and can take you a while to drop off again.

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danni0509 · 01/03/2022 07:10

At least we’ll sleep when we’re dead open

If he just sat still when he got up and played on his game or something I’d cope better but he’s just an arse making loads of noise and needs the life supervising out of him. No need!

Dh left for work at 5, we’d been up an hour and a half already at this point.

God I really don’t like kids today! 🤣

openupmyeagereyes · 01/03/2022 11:25

Ds does sit and play his game/watch YouTube on the TV. However, he does periodically run up and down the room, want you to look at stuff and get annoyed because his game crashes or he can't do something that he wants to do. He's playing his game on a laptop so that he can use the cheat codes etc. So as much as I try to doze on the sofa it's largely pointless because you're constantly being woken again.

Hopefully he'll sleep until 5 tomorrow!

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dimples76 · 01/03/2022 12:46

Hope that you get more sleep tonight Danni and Open.

I think that I mentioned before that I felt bullied by the LA. I received an email from them today to say that they are instructing a barrister to act for them. It's only 3 weeks until the hearing - it feels like it is intended to intimidate. Bring it on, I am now in fighting mood.

MagratLancre · 01/03/2022 13:11

I hear you on the bullying @dimples76. We only found out LA had instructed a barrister when we looked at the paperwork of who was coming to the Tribunal. Anecdotally, and certain in my experience, the Tribunal panel tend to be more sympathetic to parents especially those representing themselves.

openupmyeagereyes · 01/03/2022 13:21

It is definitely intimidation dimples, don't let them faze you. They must feel like they need the support which is, perhaps, a good sign for your case.

I'm obsessed with following the news on my phone. Have to watch it on my phone. Has anyone discussed it with their dc yet?

Ds was in school for just over an hour today. He's still nervous about staying in the classroom without me. I have a catch up with them on how the transition is going this week.

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danni0509 · 01/03/2022 15:00

I find it ridiculous dimples all this trouble they’ll go to, to oppose your ds having occupational therapy when you have tons of evidence backing that he’s half his life delayed with his motor skills. It’s been professionally recommended that he has the input. Maybe they should start saving all the money they are wasting going to a tribunal and just put the support in place. Imagine how much it costs them. Wtf. They’ll lose anyway!

Kick their arse! And kick it from me whilst your at it! 🤣 if you send imitating dory a message if you need any help, she’s knowledgeable on all that sort of stuff legislation and laws etc. I’m sure she won’t mind, ive messaged her before.

open no I haven’t discussed anything, I can remember explaining about the coronavirus when we couldn’t go on holiday and he didn’t understand really, he just kept saying to anybody that would listen ‘Boris Johnson won’t let me go on holiday’

What do you think will happen? I read earlier putin has put his family in an underground bunker. Couldn’t think of anything worse being locked in a bunker with ds for years on end. I think I’d rather bloody detonate a bomb on my own head! 🤣