Primary school auties: summer and the new academic year - thread 7

[openupmyeagereyes]

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

Most of the reviews are from autism parents for those compression sheets.

Probably go on the bonfire in my garden with every other item that’s been a waste of money, but I’ll live in hope!

I haven’t danni, he doesn’t seem to seek deep pressure. We bought a weighted blanket but he’s never really used it and likes to stick his legs out of the duvet so I don’t think he’d like the sheets.

We’ve had a good week here with a nice mix of activities. We went swimming again today and did some more floating/kicking and bubble blowing, plus he went under the water a lot in his goggles and he swims a little then.

Although every day ds asks me where are we going today . I’m hoping we get some rainy days so we can just stay at home all day.

Carrie home-school again? not in my worst nightmare! End of week 2 of the hols (can you tell I'm counting down?!) and DS is all over the place.

He thrives on structure and routine. I have written the plan for the week on the whiteboard but as every day is different I'm not sure it helps.

I'm struggling to manage work and the children and feel exhausted. My stepmother looked after DS today. It was the first time in about 2 years and she looked v anxious when she collected him. However, he came home in a calm and affectionate mood. She said that he was v well behaved and she offered to have him next Friday. Hurray!

Well dimples that’s a result, isn’t it! Hope he’s on best behaviour next week too 🤞

Sorry you’re struggling though, it must be hard juggling.

Fingers crossed he is settled with her dimples to give you an extra pair of hands. Sorry you’re struggling with work and juggling the kids.

I read on the Instagram of the articulate autistic that zoning out (what she calls autistic staring) is a way of taking a sensory break. I thought that was interesting. She’s got lots of good information on her blog. This is one of her recent posts, I didn’t search this myself!

www.thearticulateautistic.com/my-autistic-child-makes-me-miserable-the-google-search-results-series-part-1/

You want to see my google search history regarding ds open 😂😂

Usually goes along the lines of…

‘Cannot cope with my autistic child anymore’
‘Child’s tantrums ruining my life’

Xx

I’ve been to dunelm mill this morning and bought a little plastic storage box for ds bedroom just for his sensory toys / fidget things, it was only £3, he’s got loads of bits and bobs but distributed into all of his toy boxes / under the bed / under the sofa / in the car, they are allover the shop!

So I’ve bought a box just for his sensory bits, I’m going to find them all later and sort everything into the one box so it’s all together so I can just grab the box when he needs it and it’s all to hand.

Is there any sensory toys / fidgety bits your ds / dd’s like specifically?

I’ll try post a pic when I’ve sorted it x

Those pop tubes i mentioned before ds loves those!

He even takes a couple in the bath and pours jugs of water down them.

Also i meant to add! Open. I’ll read that link today, thanks x

I bought some pop tubes from Amazon after you mentioned them danni. Ds likes them plus they’re good for hand strength.

Great to have a sensory box to hand if it helps ds stay calm.

DD has a bunch of rainbow coloured translucent dice from Tiger that she really likes, and anything jewel like (those sticky back jewels for crafts, the gems from Lego sets, anything rainbow coloured and translucent really). She's always liked smooth/shiny things. She used to stroke her soft toys' eyes when she was little!

Otherwise I think her sensory stuff these days is mainly outdoors playing with bugs, so can't really put that in a box :D

Ds tends to fiddle with whatever little toys he’s playing with rather than specific sensory toys. He does love a fleece blanket. We have one in the car for when it’s cold as he won’t wear a coat in the car, even for the short school run, and he usually puts it over himself even if it’s very warm. I think he just likes the softness of it.

Like you danni, we have loads of stuff bought and not used

I bought the tubes too, DS not bothered (bizarre for a sensory seeker). He loves the theraputty, I got different strengths, his preference is extra firm!!!

Bit of good news here… DS epilepsy consultant got back to me yesterday, she’s watched the vid I sent her of DS and told me it’s not an absence seizure and explained why. Won’t bore you all with it but if anyone wants to know what to look for just shout.

Danni, we have a weighted blanket. Not sure if helps but it manages to stay on the bed! More than the duvet!!

Dimples, I’m behind the curve on a lot of your stories, so was home schooling a no?? At the moment I think it would be bliss… but rather just no school stress/ shitty phone calls/ horrible comments like ‘but what is wrong with your child??’ And the like from the Head / stares/sympathy looks from parents etc etc. I actually think he would learn with me. It would be a killer financially plus I genuinely like my job but I’ve not ruled it out. What is breaking me is not DS, it’s schools response to DS. And DSs response to school (apparently according to them)!

A good week too (interspersed with work too Dimples…). Farm, theme park today (awful but the kids loved), swimming, visits to relations, RHS gardens near us, lots of cake eating (and wine drinking) (latter me, not DS). I feel better than I’ve done for months!!!

carrie great that you're all relaxing and feeling better without the stress of school. Back in reception when ds first started refusing to go to school (nothing like how it is now) I started investigating home schooling. In theory I love the idea of it, though ds is an only and does love seeing other children so that would require lots of arranged socialisation, but the main issue is that ds would likely not do it as there's too much distraction and he's not compliant enough. He did pretty well for a month during the January lockdown but then started refusing to do anything so we sent him back to school. Having said that, based on what is in his books this year, I think that he did more work with me than he does at school so no wonder his teacher was impressed. I really love aspects of the Charlotte Mason approach which is really popular in the US.

We had a full day at home yesterday. In the evening when ds was getting tired and grumpy he started complaining that he'd had no fun today as he'd not gone anywhere - this is what I'd have to contend with if he was homeschooled!

danni how’s the compression sheet going? Which one did you order?

DS never plays with any of the sensory toys I buy him. He really likes getting his hands into stuff (but nothing sticky!) sand and water are his faves. Yesterday when we were on a walk at a nature reserve he sat on the path for 30 mins playing with gravel. Fortunately DD was asleep in the pushchair so I could indulge him. It was noticeable how happy and regulated he was afterwards.

Carrie glad to hear that you are feeling happier. Re homeschooling DS hated me teaching him, he really couldn't cope with me having dual roles. Any way I am a single parent so not working is not really an option. I'm lucky though that DS's school adores him, we have our ups and downs with them and although they don't always get it right they definitely try their best by him and are supportive of me too. I feel sad because I don't think it is going to be the right setting for him going forward.

Hi all! Back from holiday, DS happy as all usual TV progs etc are back on and his brands of food are back to normal! I might buy some of those tubes. We have lots of fiddle things that helped on holiday but DS missed his weighted blanket the most I think.

Ds verbal stimming is driving me potty!

He’s ALWAYS extremely loud and sings / talks / makes noises incessantly but he’s making a slurping noise like he’s drinking a drink LOUDLY and then making sounds like he’s chewing food, again really LOUDLY and also banging his teeth together. The 3 together all day is sending me over the edge. He’s not doing it for any other reason than that he likes the sound.

He stops talking to me mid chat to do it. He’s been doing it (for a few weeks) but since 4 this morning, 6 hours of the same noise on repeat and I can’t even leave the room to get away from him because he needs supervising!!! argghhhhhhh.

I’ve told him to stop. He’s doing it more, I’m ignoring him he’s continuing to do it. I’ve taken him out he’s still doing it.

I’ve had my air pods in but I can’t just sit with them on all day to stop the noise, he’s honestly driving me mental with it, he’s so loud.

Nothing works with him.

He’s become obsessed with LOL dolls, thanks YouTube! He likes to watch them opened etc.

So yesterday I bought him 2 balls, (I’d stupidly said he could have 2 before we went, thinking they would be about £3 each 😂) he specifically asked for the suprise balls / colour changing blind bag - no idea! Just went with what he said, I didn’t have a clue how much they were so we went to symths, I got a shock how expensive they are! £18 for 2 plastic pieces of tat.

He’s asked for more today. I said no ds.

If he stops with this slurping noise though I’d happily buy him a share in LOL 😂

Then I see on the entertainer last night they are half price! Never mind! I didn’t know yesterday and don’t have time to shop around with ds in tow. Straight in / straight out.

danni that would drive me mad, I hate the sound of people eating.

dimples I hope juggling work and childcare is ok.

Magrat hope you had a nice holiday.

All ok here so far with ds being mostly very good. I’m generally doing one outing a day with him, that seems to work well. This week we have had a play date at a country park, walked down the river to a park, been swimming, been to another park and seen grandparents.

Probably had my worst day with ds yet, he’s been up since 2am. I had to strap him in the car in his harness this afternoon and leave him for 30 mins to calm down as he’s seriously hurt my arm hitting me non stop. He went absolutely mad and was just attacking the shit out of me. I’d said he couldn’t have his 4th go ahead bar (he’s been eating non stop all day) so he just flipped and went mental.

Drained!!!!!

Anyway he’s in the bath now, I’m going to lay him down at half 6 because he’s been awake since early hours and he’s in such a foul mood. I’m off to bed early!!

He’s been diagnosed with severe adhd (hyperactive / impulsive type) today. I have a psychiatrist phoning me within the next 14 days to talk me through medications then he has to go in and be weighed and he’ll get a prescription.

The phycologist phoned me at 4pm with his diagnosis.

She said ds has severe complex needs and is going to need lots of support she said the panel are wondering how I’m managing (I’m not! Clearly not!) she told me to phone social services and ask for a disability social worker as ds is more than entitled to respite and with his needs she would imagine a fair bit.

So he has his annual review on the 24th September so I’ll ponder for a bit and let them know then. I just don’t like the thought of social services telling me I’m not doing it right, which to be fair I’m probably not, but I don’t think anyone knows how to manage ds.