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Here are some suggested organisations that offer expert advice on special needs.

Primary school auties: summer and beyond - thread 5

999 replies

openupmyeagereyes · 29/06/2020 11:18

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

Thread 4
www.mumsnet.com/Talk/special_needs/3748449-Primary-school-Auties-into-2020-thread-4

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5
Lborostudent55 · 09/02/2021 14:01

Yes of course @MrsDuBeke, if you click on the link in the original post you will be redirected to a full participant information sheet and informed consent inform which explains all the information you have requested.

The data will be used for my final year research project and is funded by Loughborough University. The study has been through a rigorous ethics checklist and has been approved by Loughborough University Ethics Committee. No identifiable information is required (e.g., name, email, address etc) therefore all participants remain completely anonymous. The data will be stored on the secure university one drive and the only people with access to the data are myself and my supervisor, Dr Gemma Witcomb. The data will be stored on the one drive for one year from the date of project submission before it is deleted.

The aim of the project is to improve the support that is available for parents who have difficulties feeding their child(ren).

I hope this answers some of your questions, if there is anything else you would like to know then please do not hesitate to ask.

Many thanks :)

Lborostudent55 · 09/02/2021 14:02

@danni0509 Thank you so much :) x

LightTripper · 09/02/2021 14:12

Are you only looking for picky eaters @Lborostudent55? I could fill in for my DD (autistic and not very picky) or my DS (NT and pretty picky). If it's looking at the impact of picky eating on Mental Health I guess you may be looking for children with eating issues only?

Good luck with the research anyway - great that these issues are being looked into!

Lborostudent55 · 09/02/2021 14:21

@LightTripper yes please! If you could fill out for your pickiest child (regardless of whether or not they have autism) that would be really helpful! Thank you :) x

LightTripper · 09/02/2021 14:42

Done! Just one thing to be aware of: on the final screen, instead of the text wrapping it made the page very wide, so that the "next" button with the right arrow was hiding off the right hand side of the screen.

I found it (!) but may be worth seeing if you can fix that, or make the text narrower so the "next" button doesn't hide?

Good luck!

openupmyeagereyes · 09/02/2021 15:17

Lborostudent55

I’ve filled this in. I have a VERY restricted eater who eats only the same handful of foods daily.

I found it interesting that the majority of the questions were about the parents mental health and very little on the child’s actual eating issues. Also, strange times to be asking such questions as at the moment emotional (and physical) health is hugely impacted by the pandemic and you would likely get very different answers at another time.

Good luck with it all.

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danni0509 · 09/02/2021 15:40

Is he still the same as before with his food open? Did you ever see a dietician? They were absolutely useless for us just said give him a vitamin and food aversion is normal with autism. Gee how helpful, thanks!

Ds only eats plain pasta, breadsticks but have to be the thin asda ones that say olive oil on the box and he checks aswell, plain unbuttered seeded bread buns, apples, peanut butter sandwiches - which is 1 half of a slice of brown bread un buttered he hates butter and I have to cut the bread in half and he’ll only eat the bottom part with the straight edge he doesn’t like the top half were the crust goes rounded at the top probably makes no sense when I’m explaining but he’s so pissing paticular!

brunch bars, peach activia yoghurts, go ahead bars & sometimes bananas. Cherry tomatoes & cucumber. Oh and any kind of chocolate he’s not fussy with that! Then thats it, he just doesn’t eat meals at all.

He went through a period of eating chicken curry (really mild) and rice as long as I didn’t call it ‘chicken’ curry. And bolognaise, I told him this cat from across the road had knocked on the door when he was at school and id give him a bowl of it and he thought it was delicious and did ds want some like the cat and he fell for it 😂 but hasn’t eaten any of those for months now, just lives on plain pasta every night, pasta on one plastic plate and tomatoe / cucumber on another. He literally kills me if I put them on the same plate.

He’s looking really thin and boney, doesn’t help he’s tall it makes him look worse, a few people have commented recently that he’s skin and bone and it makes me worry, he drinks milk thankfully so I’ve been giving him 2 cups of blue top milk for calories especially if he’s not eating a lot.

I was even tempted to buy him a cat bowl and try get him to eat food from that ffs!

dimples76 · 09/02/2021 15:52

Danni vent away, we are all here for you. There's absolutely no need to apologise. Good luck with the Head of Send.

Were you speaking to the Ed Psych today Open?

Have had DS home today as he had a hospital appointment. Good news is that his hearing is normal now, bad news is that means he is ignoring me a lot! Worked out v well as my Mum looked after DD and when we went to collect her the sun was shining so DS got to go sledging with his cousins. DS surprised me with how well he did his school work so all in all a lot to be grateful for. Only bad thing has been the dentists called to arrange a check up for DS - I think taking DS to the dentist is my least favourite thing to do.

livpotter · 09/02/2021 15:52

Hope the chat with the LA goes ok danni. Hey if eating out of a cat bowl would work I would definitely try it!

Yeah we're down to cheese and onion hula hoops, smarties, plain pasta and milk. I make him a chocolate cake that is made with almond flour every couple of weeks too. He goes in phases, sometimes he'll eat fish fingers, garlic bread, rice and Yorkshire puddings but it's not a definite thing.

I've kinda given up trying to be honest, when I spoke to the dietician she said that he should be ok on what he's eating but she was worried about his Iron levels as he drinks so much milk. So we give him vitamin d and an iron supplement. It's funny though cause it doesn't seem to affect his energy levels and he appears to be growing normally, he all muscle as far as I can tell!

livpotter · 09/02/2021 15:54

Dimples my dh took ds to the dentist last time and it was so traumatic for everyone I've been putting off re booking an appointment. Definitely my least favourite thing to take ds to. Glad the doctors went well.

openupmyeagereyes · 09/02/2021 16:02

Good news is that his hearing is normal now, bad news is that means he is ignoring me a lot!

This made me laugh! Glad ds enjoyed sledging.

liv is that all your ds eats?

danni I’d be thrilled if ds ate a lot of that stuff. Don’t apologise for the venting, it’s what we’re here for.

Ds eats the same 5/6 things day in, day out. Won’t try anything else and it’s been FIVE YEARS! He’s average height and weight. We were discharged from the dietitian as nothing worked.

Thankfully ds is fine at the dentist though we haven’t managed to get check-up appointments yet.

My turn to get up with ds today. Still between 3:30 and 4am. Still refusing school work.

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livpotter · 09/02/2021 16:34

Pretty much open! Sorry about the early wake ups

MrsDuBeke · 09/02/2021 16:47

What a shambles @danni0509, at least HT was honest but still, totally inexcusable. Hope you get somewhere with LA.
@dimples76 glad hearing is OK and he had fun sledging! I hate taking DS to dentist!
@livpotter my DS is very particular with food. He eats across the food groups (well, if dairy leas count as dairy!) and has a multi vit. As he gets older he tells me more, and a lot of the issues are to do with texture, things tasting different, and foods mixing (eg he will eat spaghetti bol but only if the spaghetti and the meat are not touching and no sauce on them). We have the bread thing too @danni it has to be cut in a certain way etc.he has exactly the same packed lunch every day! Buy it's fine, it's healthy and balanced, although I'm still buying some of the organix brand because he lives them so much!

openupmyeagereyes · 09/02/2021 16:58

I have to cut the bread in half and he’ll only eat the bottom part with the straight edge he doesn’t like the top half were the crust goes rounded at the top

danni this doesn’t surprise me, I’m amazed we don’t have to do similar. Have you tried the ‘sandwich’ loaves? I thought they were more square.

liv it sucks doesn’t it. I try not to think about it much any more. I’m sure if he ate more variety his sleep and behaviour might be better but it’s out of my hands.

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livpotter · 09/02/2021 17:10

It's great that he can tell you mrsdubeke. Ds definitely is at that point with his communication yet.

It really does open. Annoyingly it also impacts on dd as she sees him not eating and also refuses to eat. At least when she's in school I know she's eating properly with her friends.

openupmyeagereyes · 09/02/2021 18:30

MrsDuBeke that’s great. Knowing the exact issue is surely half the battle. Maybe you can start to negotiate expanding his choices by suggesting similar things to those he likes. Have you heard of food chaining?

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MrsDuBeke · 09/02/2021 18:40

Yes...it doesn't go well though! I'm met with complete bafflement!

dimples76 · 09/02/2021 21:13

I think that I am pretty lucky on the food front. DS eats most things but is big on carbs and ice lollies. I did push it a bit far today though as I added spinach to his plate. With my nephew and niece they would freak out if an unacceptable food item was on their plate and refuse to eat anything on the plate. DS used to insist that the offending item was removed but today he just left the spinach on the plate and ate the rest - I was amazed. DD loves her food and even wolfed down the spinach!

The dentists receptionist was trying to persuade me to have my check up and the two children's at the same time. She suggested that DD could sit on DS's knee whilst I was in the chair (I wish!) I reminded her at our last appointment that she came upstairs to see what all the screaming was about.

MrsDuBeke · 09/02/2021 21:24

Wow @dimples76 great that he ate around it and didn't freak out, it would have been banished to the kitchen here! I had to tell DS that ice lollies are only on sale in the summer time as he got really obsessed with them (like, chain eating!) Does anyone else's DC have no off switch when it comes to foods or drinks they like? I wonder if it's a sensory thing too, not being aware of being full, and DS is getting better at recogniding that feeling but if I let him, he would just have drink after drink etc.

LightTripper · 10/02/2021 00:02

You see with us it's weird as DS is the one who will cry unless I take the offending item off his plate, whereas DD just eats round things. The other day she even came up to me while I was prepping our supper and asked to try a bit of mushroom, which she's never liked. She said she liked it (raw) so I might try cutting one up and putting it on a snacky plate with mayo at some point... anyway, with DD it's mainly best to back off and wait for her to be ready/show an interest.

DS is more of a drama llama. He'll ask for something, then when it arrives cry and claim to hate it, but then sometimes end up eating the same thing 5 minutes after that. The other day he had a massive cry because I'd melted the cheese onto his baked potato instead of just sprinkling it on (when it melts anyway soooo.....) I think it's more an attention thing for him, whereas with DD if she's averse to something it's really set in stone - you'll never find her secretly eating it 5 minutes later when you've stopped looking! We're very lucky that she isn't too sensory around food.

openupmyeagereyes · 10/02/2021 09:32

Light it sounds like it might be a control issue with your ds if he will then try and sneakily eat it anyway? Does giving him a choice of two acceptable (to you) items work better?

I'm sure ds' issues are a combination of fear based (due to illness), sensory and control issues. I'm not sure what the solution is but feel like I need to go back to basics and re-read all the info I have on the subject now that he's getting older and it might be possible to reason with him about it.

He's been up since 2:45 today. Woke up wet and then refused to go back to bed. It's going to be a long day. I think I'm going to try the next size of Drynites. It seems like they'll be far too big given they are for 8-15 years but it's worth a try. Impossible to know if he's going while he's asleep or after he wakes up.

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openupmyeagereyes · 10/02/2021 09:35

And maybe just give the cheese (for example) in a separate bowl or pile on the plate for him to sprinkle himself? I think wanting food separated is an issue for NT kids as well as ASC.

You've probably tried this already though so please ignore if you have Smile

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danni0509 · 10/02/2021 09:37

Send manager rang me back yesterday, asked for the history and was horrified after I’d told her everything, she was fuming as they’ve been receiving a lot of funding etc.

Said she would be making some urgent phone calls and get back to me.

Never heard back but this morning took ds in and they’ve said to collect him at 3pm!

openupmyeagereyes · 10/02/2021 09:49

Never heard back but this morning took ds in and they’ve said to collect him at 3pm!

Grin hopefully they had their arses handed to them.

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LightTripper · 10/02/2021 09:55

@danni0509 hahahaha sounds like somebody finally held them to account! As a taxpayer let alone as a Mum I am horrified with how they have been treating your DS.

@openupmyeagereyes those are very good ideas. Honestly it's classic second child syndrome and I'm afraid I just don't give it enough attention as a problem and too often just give him what I think he'll like to avoid the drama (but then have little sympathy when he is dramatic!) We should actually sit down and come up with a proper plan for extending his range a bit given that he's starting school in September. I'm pretty confident he'll get there in time. It doesn't seem to be a "fundamental" issue if you see what I mean - I think it's more classic 3yo control stuff.